First, I am really happy, and a little full of myself, that I am writing again so soon....medicated?..yes, but that usually isn't enough to get myself on the computer and writing. Tick..tock..I'll have to make this one fast.
I am very sick, every hour of every day. Here and there I have days that are just through the roof horrible. Yesterday was one of those. So much so, late last night, I was considering going to the ER. It is ridiculous that I would ever think, for a second, that they could help me. I know better. It was a case of desperation and wishful thinking, hoping that they could do something to make me more comfortable. Today, I am more like my "normal".
Yesterday, Chris said they would like to bring the kids over today, if I felt up to it. ALWAYS, an offer too hard to refuse. Thankfully, when I woke up today, around 3:30 pm, and after an hour or so, I felt I was up to it. There is nothing in this world, like seeing their beautiful little faces coming up to our front door. They are my drug of choice...love them so much. As it turned out, my mother called from a local store, asking if she could stop by. She didn't stay long, but it was great to see her too.
I have to tell you about a new show that I am really excited about. It is on TNT, called "Monday Mornings", and is on Monday nights. Sanjay Gupta, the CNN medical correspondent, wrote a novel by the same name. I believe it came out in 2012. The book is fiction, but based on his experience as a neurosurgeon. Apparently, the surgeons meet every Monday morning. At these meetings, they go over cases gone wrong from the previous week.
David E. Kelley is the creator of the show, along with Sanjay Gupta. I knew, between the two, this would have to be a great show. The first episode was on last Monday.
What I appreciate, is that they show the ego and arrogance that many doctors have. I have seen this too many times, since I got sick. My own stories are sometimes hard to believe. So often, I wished I had a hidden camera for 20/20 on me. I actually had two doctors tell me they only wanted me to tell them my singular worst symptom...what?? They wouldn't allow me to tell them more than one!!! They completely caught me off guard, so I didn't react like I should have. Recently, I had an appointment with a new internist. I thought it would be a good idea to have one doctor, that would oversee all of my health issues. He point blank told me he didn't want to hear about any of my conditions or diagnosis's. His words were "I cannot compete with the specialists, leave that to them". He went so far as to tell me that he is the guy to see if I get the flu. I have SO many stories like these examples, I could write a book on that alone. Luckily, I do have some really great doctors..cardiologist, endocrinologist, gastroenterologist...fingers crossed, my new neurologist too.
In this show, you see the good and bad in doctors. It is only a half an hour long, but it seemed like it lasted an hour. Very good, and realistic. It seems more like a real life documentary, than the medical dramas we are used to seeing on TV. I love that it exposes the fact that there are doctors that should not be practicing. Again, I have had this experience so many times! I guess I feel that this show validates all that I have been saying, for the past several years. Anyway...just my two cents..
I better get back to bed...just had to jump at the chance to write, while I am up to it....good night!
Sunday, February 10, 2013
Tuesday, February 5, 2013
Trying to keep up....
Tonight, I decided to write a short post. It would mean so much to me, if I could write every few day. For me, that is ambitious, but I will do my best.
I know I should read my previous posts, prior to writing. It would help to know where I left off and what I wrote, so I do not repeat the same old stories. It takes a lot of energy for me to be sitting upright at the computer, so I never look at past posts....sorry!
Over the past year, I have gotten much sicker. After six or more months of worsening/new symptoms, I know they are here to stay. Obviously, that's never a fun realization. Nonetheless, there was a definite progression over the length of 2012. From talking to my neurologist and immunologist, I know that this is most definitely a one way street. Regardless, it is always discouraging when the time comes that I have to admit I have a new normal.
I have come to a point, where I have been canceling my doctor appointments, left and right. They are just too hard and grueling these days. So, so hard on me. This Thursday, I have an appointment with my endocrinologist. My son, Ryan, will be home and available to drive me. This will be a big help and I am so grateful.
Our poor new pooch, Molly, has been under the weather. She didn't seem sick, when we first brought her home. It is funny, because we couldn't believe how well behaved she was when we got her, considering she is only two. Well, "poochy" is starting to feel better and we are now meeting the real Molly. Yowza...her energy and excitement is boundless, unlike the Mr. and Mrs.!!!! We are so lucky that she is perfectly house trained. If there is one thing we have learned, is DO NOT TAKE OUT THE TENNIS BALL!! What is it with dogs and tennis balls??? She needs tennis ball withdrawal therapy! Molly jumps on my bed and sometimes, I'll throw it from my bed down the hallway. That works...you would think! She ends up jumping on my bed, dropping the ball on to the floor and barks until I, yes I get up and pick it up....rosta ruck! We have been in a bit of high energy shock the past few days, but she is still a good girl. It feels SO good to give her tight, tight hugs. I missed that so much! She is so sweet and will be with us for a long, long time.
I do remember, in my last post, that I mentioned that Ceal sent me Les Mis! Jimmy and I watched it the other day. I was really sick, and our DVD player is in my living room. Knowing that I needed to be in my bed, I wasn't sure if we should have watched it then or not. Once the music started, my adrenaline when through the roof. At one point, Jimmy had to take out Molly, so I went to bed, until they were back. From the beginning of the movie, and especially at the end, I cried buckets...I couldn't see much beyond my tear filled eyes, but I think Jimmy was right behind me....of course, he would deny it! The movie took my breath away..and water weight! It brought me back to all of my first row visits to Broadway. I hope you all get to see it. If anyone wants to come and watch it with me, Ceal sent lots of popcorn!
I know this post is not action packed. Hoping to stop in once or twice a week to write again. It is good for me to write, and sometimes I might even have a story!
XO
Cathy..., no, Fantine
ps~ not to kick a dead horse, but I love my family...so blessed
I know I should read my previous posts, prior to writing. It would help to know where I left off and what I wrote, so I do not repeat the same old stories. It takes a lot of energy for me to be sitting upright at the computer, so I never look at past posts....sorry!
Over the past year, I have gotten much sicker. After six or more months of worsening/new symptoms, I know they are here to stay. Obviously, that's never a fun realization. Nonetheless, there was a definite progression over the length of 2012. From talking to my neurologist and immunologist, I know that this is most definitely a one way street. Regardless, it is always discouraging when the time comes that I have to admit I have a new normal.
I have come to a point, where I have been canceling my doctor appointments, left and right. They are just too hard and grueling these days. So, so hard on me. This Thursday, I have an appointment with my endocrinologist. My son, Ryan, will be home and available to drive me. This will be a big help and I am so grateful.
Our poor new pooch, Molly, has been under the weather. She didn't seem sick, when we first brought her home. It is funny, because we couldn't believe how well behaved she was when we got her, considering she is only two. Well, "poochy" is starting to feel better and we are now meeting the real Molly. Yowza...her energy and excitement is boundless, unlike the Mr. and Mrs.!!!! We are so lucky that she is perfectly house trained. If there is one thing we have learned, is DO NOT TAKE OUT THE TENNIS BALL!! What is it with dogs and tennis balls??? She needs tennis ball withdrawal therapy! Molly jumps on my bed and sometimes, I'll throw it from my bed down the hallway. That works...you would think! She ends up jumping on my bed, dropping the ball on to the floor and barks until I, yes I get up and pick it up....rosta ruck! We have been in a bit of high energy shock the past few days, but she is still a good girl. It feels SO good to give her tight, tight hugs. I missed that so much! She is so sweet and will be with us for a long, long time.
I do remember, in my last post, that I mentioned that Ceal sent me Les Mis! Jimmy and I watched it the other day. I was really sick, and our DVD player is in my living room. Knowing that I needed to be in my bed, I wasn't sure if we should have watched it then or not. Once the music started, my adrenaline when through the roof. At one point, Jimmy had to take out Molly, so I went to bed, until they were back. From the beginning of the movie, and especially at the end, I cried buckets...I couldn't see much beyond my tear filled eyes, but I think Jimmy was right behind me....of course, he would deny it! The movie took my breath away..and water weight! It brought me back to all of my first row visits to Broadway. I hope you all get to see it. If anyone wants to come and watch it with me, Ceal sent lots of popcorn!
I know this post is not action packed. Hoping to stop in once or twice a week to write again. It is good for me to write, and sometimes I might even have a story!
XO
Cathy..., no, Fantine
ps~ not to kick a dead horse, but I love my family...so blessed
Friday, February 1, 2013
Johnny come lately...
AGAIN, I have let so much time slip by since my last post. So often, I lie in bed knowing exactly what I would like to blog about, but just haven't been up to spending so much vertical time at the computer. I know I repeat myself...I could just hear the laughs..., but I wish I could telepathically blog and talk to my friends and family. It wouldn't exhaust me and I would be enjoying all the special people in my life.
I have several letters I need to write to some very special friends and family. Earlier tonight, I came in and wrote two, which is a major accomplishment these days. That was a few hours ago. I am surprised and elated that I am up to posting tonight. It has been so long, and I have had so much that I wanted to write about, over the past few months.
As you can imagine, I cannot remember what I thought was so important. I will try to catch you up...warning....I do not do bullet points!
I didn't take the time to read my last posts regarding the dog drama. Moose died in October (we still cannot mention his name without our eyes filling up...my sweet buddy) and we have been through four dogs, before finding my perfect peachy pooch last week. PERFECT, PERFECT, PERFECT!!!!
My sister was working like crazy, from New Jersey, constantly checking on lab and golden rescue sites, along with breeders and every other imaginable avenue. A problem that we had with two different short term visitors, was that they were trained to only go freestyle in a fenced yard. We do not have a fenced yard. Since these two dogs were strays with no boundaries, going in fenced yards is all they knew from their foster homes. When we got them home, they would not go while on a leash, and only a few feet from us. Our favorite rug, seemed to be theirs too!
With my health problems, it was impossible for me to take "Jenny" and, later, "Tobey" out several times a day, for them only to come in and do their thing. Jimmy worked so hard, for six weeks, on Tobey. He spent hours every day, but I couldn't continue with such untrained dogs. If I were well, it would not have been that much of a problem, since I could have worked hard on it during the day.
Sooooo, years ago, we had a yellow lab mix, Molly. She lived to be thirteen/fourteen. We rescued Moose a few months before Molly got sick. Moose was a black lab mix. We've always had lab mixes, so that was where my concentration was for my search....along with the golden rescues.
It has been very hard for me to get out of the house to go here and there meeting dogs at foster homes, so that has really prolonged the process. In the meantime, I desperately missed the presence of that special kind of love in our house.
Last week, Jimmy took me to a doctor appointment in Miami. The night before, I was scrolling through the available dogs in the local shelters. I found another "Molly", but this one was a black lab, like Moose. When we stopped on our way home, I immediately went to meet Molly. She was jumping and barking like crazy. I said "no way", then went on to meet the others. The woman helping us, asked us to consider Molly and take her out to their courtyard. I sat on the bench, while Jimmy played with her....it was love at first sight...hhmm, I wonder if that ever happened to Jimmy before?!?!?
We took her home and have been astonished at her incredibly mellow temperament, especially for a two year old! Wherever she lived prior to the shelter, must have been an extremely loving home. She is so sweet and well behaved....and, perfectly house trained. Jimmy and I both need her, for different reasons....and much more than she needs us!
I know I am a dreamer, but I am convinced that Molly and Moose conspired, in doggie heaven, to send us this perfectly trained dog. I look back to when she was so hyperactive when we first saw her, and wonder if she knew we were coming and was so excited when we showed up. Since then, she has been as calm and mellow as any dog I have ever seen. Another great thing is that she is so relaxed and happy around my sweet grandchildren. It is like we have always had her. Moose's black color and Molly's name...so perfect! In the past, we have always adopted lab mixes. This time, we have Molly Von Pure Bred...la di dah! Sorry for my long story, but had to get that out of the way.
It has been a crazy few months. I am so much sicker. It can get really scary. These days, I get much sicker, after exerting the least bit of energy. During the past few months, I went through my bi-annual depression. Same as always, lasted approximately six weeks. So, so happy that is behind me. In my defense, when I am at my sickest, it definitely affects my emotional state.
My birthday was almost two weeks ago. I was dreading it. When doing as poorly as I had been, I really didn't want anyone to come over, no cake...I just wanted it behind me, to stay in bed and just get through the day, like all the others. I did not want to have to put on a happy face, times were just too rough.
Danielle, weaseled her way in to my heart by asking if they could bring the kids over to see me on my birthday, and they would bring cupcakes. I love, love birthdays with the kids...no matter who is actually having a birthday. They get so excited, and belly on up to the table all ready to blow out the candles. The thoughts of their beautiful faces, in the birthday candle light made me tell Danielle to come on over. I couldn't resist...Danielle gave me an offer I couldn't refuse!
As it turned out, my parents stopped over, then later Ryan and Liz. We didn't have any dinner, just talked and had cupcakes. Considering all of my current issues, this ended up to be possibly the best birthday I ever had. It couldn't have been more simple and it was wonderful to see everyone's faces. I surprised myself! A perfectly suited special day for my circumstances. A love filled day...that sounds corny doesn't it???...but, it to me it was!
The other day, Ceal, my oldest and best friend....approximately fifty years now, sent me a gift for my birthday. We stopped exchanging years ago and couldn't imagine what was in the box. When I opened it, it had several bags of microwave popcorn, several boxes of movie candy AND.....drumroll......a copy of the Les Miserable movie!!!! Everyone that knows me, knows what a Les Mis fanatic I am. I think I saw it thirteen times, over several years. When they were running the commercials for the movie last month, I had chills and my eyes filled up. I wanted to see it SO bad. Ceal wrote in her note that she knew how much I would want to see it, but probably wouldn't be able to go to the theater. She was so right, I wanted to see it, but knew I couldn't hold out, sitting upright in one position for the length of the movie. Of course, my eyes filled up....and, then some :**) This was one of the most thoughtful gifts I have ever received...so perfect...so me! I am so blessed to be surrounded by love and support from every direction.
My sister, Nancy, rented a large home on the beach. She had it for the first three weeks in December. My sweet cousin, Joan came also, for the first nine days. Again, it has been such hard times lately. It doesn't really matter who comes, I am not up to too many visits. I think I saw Nancy four times in three weeks and Joan twice. It does break my heart, that such special people in my life were here and I cannot "have a day off" and enjoy time with them on the beach, at fun restaurants, etc.
Then, on the back end, my sister-in-law, Lisa, came down for five days in January. Again, very exciting to get to sit, face to face and talk and talk and talk...hey....Lisa is such a gabber! I am not sure, but I think I saw Lisa twice. The first time, she came over at night. I was in my pj's, crazy hair, not doing well, but sat in the recliner and caught up with her. In fact, Lisa stayed over too! I am so happy we got in such a good visit, but it was hard and I was diving fast. Lisa left when she woke up, since I was probably going to be sleeping all day.
The last night Lisa was here, Ryan and Liz had a combined thirtieth birthday party with a redneck theme. I am here to tell you that I am a convert!!!! I went to the party in my PJ pants, camisole with a short robe....hair in curlers. Just before going, we stopped to see my sweeties. Danielle had the best idea for my "look". She had an airport sized bottle of Wild Turkey. I put it in my barely there cleavage, with a flexible straw that came and right to my lips...oh and Tammy Faye Baker make up too. It was so much fun to look so horrible and fit in! I have to say, I am a little concerned at how much I loved the look! That night was so much fun. We really missed Phil and Laura :(, but they were busy celebrating their second anniversary skiing in North Carolina.....long overdue! I had to go in to Ry and Liz's bed here and there, but overall I did much better than expected. Of course, once I came home, the fun was over and was even sicker for days. Like any special time with my family, it was worth the price. The expression "you get what you pay for", couldn't be more appropriate...
Since I have been so sick, I have been canceling my dr appointments in December and January. Most every single day, I am too sick to go. VERY frustrating! I have several to reschedule. Hoping, spacing them at least a week apart, and having them late in the day will help....doubt it, but that's the best I can do. I just hope I can make it to the appointments and tests that are due. You cannot imagine how difficult it is for me.
So, in the end, I am still very sick. No doubt, I permanently dropped a level or two. So thankful for my family, friends and precious Molly. I love having her here with me all day and night to kiss and hug. Aside from that, I am a Words With Friends Fiend! I play so many games per day. Being ADD, I cannot believe that I am still so in to it. I need the activity, so hoping the fascination sticks!
In a perfect world, well perfect sick world, I would post twice per week. It just doesn't seem to be in the cards, at this point. I will do my best to write again very soon! So happy to be back and writing....it makes me feel "more than..." and that feels great...XO
ps ~ not sure, but I think random words in this post are in red and underlined...don't ask me why..just so you don't think you are missing a special meaning with these red words!
I have several letters I need to write to some very special friends and family. Earlier tonight, I came in and wrote two, which is a major accomplishment these days. That was a few hours ago. I am surprised and elated that I am up to posting tonight. It has been so long, and I have had so much that I wanted to write about, over the past few months.
As you can imagine, I cannot remember what I thought was so important. I will try to catch you up...warning....I do not do bullet points!
I didn't take the time to read my last posts regarding the dog drama. Moose died in October (we still cannot mention his name without our eyes filling up...my sweet buddy) and we have been through four dogs, before finding my perfect peachy pooch last week. PERFECT, PERFECT, PERFECT!!!!
My sister was working like crazy, from New Jersey, constantly checking on lab and golden rescue sites, along with breeders and every other imaginable avenue. A problem that we had with two different short term visitors, was that they were trained to only go freestyle in a fenced yard. We do not have a fenced yard. Since these two dogs were strays with no boundaries, going in fenced yards is all they knew from their foster homes. When we got them home, they would not go while on a leash, and only a few feet from us. Our favorite rug, seemed to be theirs too!
With my health problems, it was impossible for me to take "Jenny" and, later, "Tobey" out several times a day, for them only to come in and do their thing. Jimmy worked so hard, for six weeks, on Tobey. He spent hours every day, but I couldn't continue with such untrained dogs. If I were well, it would not have been that much of a problem, since I could have worked hard on it during the day.
Sooooo, years ago, we had a yellow lab mix, Molly. She lived to be thirteen/fourteen. We rescued Moose a few months before Molly got sick. Moose was a black lab mix. We've always had lab mixes, so that was where my concentration was for my search....along with the golden rescues.
It has been very hard for me to get out of the house to go here and there meeting dogs at foster homes, so that has really prolonged the process. In the meantime, I desperately missed the presence of that special kind of love in our house.
Last week, Jimmy took me to a doctor appointment in Miami. The night before, I was scrolling through the available dogs in the local shelters. I found another "Molly", but this one was a black lab, like Moose. When we stopped on our way home, I immediately went to meet Molly. She was jumping and barking like crazy. I said "no way", then went on to meet the others. The woman helping us, asked us to consider Molly and take her out to their courtyard. I sat on the bench, while Jimmy played with her....it was love at first sight...hhmm, I wonder if that ever happened to Jimmy before?!?!?
We took her home and have been astonished at her incredibly mellow temperament, especially for a two year old! Wherever she lived prior to the shelter, must have been an extremely loving home. She is so sweet and well behaved....and, perfectly house trained. Jimmy and I both need her, for different reasons....and much more than she needs us!
I know I am a dreamer, but I am convinced that Molly and Moose conspired, in doggie heaven, to send us this perfectly trained dog. I look back to when she was so hyperactive when we first saw her, and wonder if she knew we were coming and was so excited when we showed up. Since then, she has been as calm and mellow as any dog I have ever seen. Another great thing is that she is so relaxed and happy around my sweet grandchildren. It is like we have always had her. Moose's black color and Molly's name...so perfect! In the past, we have always adopted lab mixes. This time, we have Molly Von Pure Bred...la di dah! Sorry for my long story, but had to get that out of the way.
It has been a crazy few months. I am so much sicker. It can get really scary. These days, I get much sicker, after exerting the least bit of energy. During the past few months, I went through my bi-annual depression. Same as always, lasted approximately six weeks. So, so happy that is behind me. In my defense, when I am at my sickest, it definitely affects my emotional state.
My birthday was almost two weeks ago. I was dreading it. When doing as poorly as I had been, I really didn't want anyone to come over, no cake...I just wanted it behind me, to stay in bed and just get through the day, like all the others. I did not want to have to put on a happy face, times were just too rough.
Danielle, weaseled her way in to my heart by asking if they could bring the kids over to see me on my birthday, and they would bring cupcakes. I love, love birthdays with the kids...no matter who is actually having a birthday. They get so excited, and belly on up to the table all ready to blow out the candles. The thoughts of their beautiful faces, in the birthday candle light made me tell Danielle to come on over. I couldn't resist...Danielle gave me an offer I couldn't refuse!
As it turned out, my parents stopped over, then later Ryan and Liz. We didn't have any dinner, just talked and had cupcakes. Considering all of my current issues, this ended up to be possibly the best birthday I ever had. It couldn't have been more simple and it was wonderful to see everyone's faces. I surprised myself! A perfectly suited special day for my circumstances. A love filled day...that sounds corny doesn't it???...but, it to me it was!
The other day, Ceal, my oldest and best friend....approximately fifty years now, sent me a gift for my birthday. We stopped exchanging years ago and couldn't imagine what was in the box. When I opened it, it had several bags of microwave popcorn, several boxes of movie candy AND.....drumroll......a copy of the Les Miserable movie!!!! Everyone that knows me, knows what a Les Mis fanatic I am. I think I saw it thirteen times, over several years. When they were running the commercials for the movie last month, I had chills and my eyes filled up. I wanted to see it SO bad. Ceal wrote in her note that she knew how much I would want to see it, but probably wouldn't be able to go to the theater. She was so right, I wanted to see it, but knew I couldn't hold out, sitting upright in one position for the length of the movie. Of course, my eyes filled up....and, then some :**) This was one of the most thoughtful gifts I have ever received...so perfect...so me! I am so blessed to be surrounded by love and support from every direction.
My sister, Nancy, rented a large home on the beach. She had it for the first three weeks in December. My sweet cousin, Joan came also, for the first nine days. Again, it has been such hard times lately. It doesn't really matter who comes, I am not up to too many visits. I think I saw Nancy four times in three weeks and Joan twice. It does break my heart, that such special people in my life were here and I cannot "have a day off" and enjoy time with them on the beach, at fun restaurants, etc.
Then, on the back end, my sister-in-law, Lisa, came down for five days in January. Again, very exciting to get to sit, face to face and talk and talk and talk...hey....Lisa is such a gabber! I am not sure, but I think I saw Lisa twice. The first time, she came over at night. I was in my pj's, crazy hair, not doing well, but sat in the recliner and caught up with her. In fact, Lisa stayed over too! I am so happy we got in such a good visit, but it was hard and I was diving fast. Lisa left when she woke up, since I was probably going to be sleeping all day.
The last night Lisa was here, Ryan and Liz had a combined thirtieth birthday party with a redneck theme. I am here to tell you that I am a convert!!!! I went to the party in my PJ pants, camisole with a short robe....hair in curlers. Just before going, we stopped to see my sweeties. Danielle had the best idea for my "look". She had an airport sized bottle of Wild Turkey. I put it in my barely there cleavage, with a flexible straw that came and right to my lips...oh and Tammy Faye Baker make up too. It was so much fun to look so horrible and fit in! I have to say, I am a little concerned at how much I loved the look! That night was so much fun. We really missed Phil and Laura :(, but they were busy celebrating their second anniversary skiing in North Carolina.....long overdue! I had to go in to Ry and Liz's bed here and there, but overall I did much better than expected. Of course, once I came home, the fun was over and was even sicker for days. Like any special time with my family, it was worth the price. The expression "you get what you pay for", couldn't be more appropriate...
Since I have been so sick, I have been canceling my dr appointments in December and January. Most every single day, I am too sick to go. VERY frustrating! I have several to reschedule. Hoping, spacing them at least a week apart, and having them late in the day will help....doubt it, but that's the best I can do. I just hope I can make it to the appointments and tests that are due. You cannot imagine how difficult it is for me.
So, in the end, I am still very sick. No doubt, I permanently dropped a level or two. So thankful for my family, friends and precious Molly. I love having her here with me all day and night to kiss and hug. Aside from that, I am a Words With Friends Fiend! I play so many games per day. Being ADD, I cannot believe that I am still so in to it. I need the activity, so hoping the fascination sticks!
In a perfect world, well perfect sick world, I would post twice per week. It just doesn't seem to be in the cards, at this point. I will do my best to write again very soon! So happy to be back and writing....it makes me feel "more than..." and that feels great...XO
ps ~ not sure, but I think random words in this post are in red and underlined...don't ask me why..just so you don't think you are missing a special meaning with these red words!
Tuesday, December 25, 2012
Brights and Beatiful Holidays ~
Happiest of Holidays to everyone! It is now officially over two months, since my last post.
When Thanksgiving was approaching, I knew I had to post about how blessed we all are, in one way or several others. Couldn't believe, the day came and went, without a single grateful word! They most definitely are in my heart, but somehow never made it to the blog....not grateful for that!
I have been very sick. It seems I get much sicker these days, with much less exertion than in the past. Because of this, I have been having a hard time sitting at the computer for long periods of time, thus, the lack of posting. If only I could telepathically blog.....and communicate with my friends and family that way too. I would be in chit chat heaven!
Right this moment is a very sick spell, so please disregard sentences that don't make sense, mistyped words and my horrible grammar. So far, it has been impossible getting this much out. I cannot type without going over each word several times...Frustrating?? Yes!!! But so necessary after our beautiful Christmas Eve last night.
Chris and Danielle hosted our Steuber Christmas Eve and it was beautiful and as magical as Christmas Eve should be. Everything was so delicious, pretty, warm and cozy. The most perfect and favorite Christmas songs were playing all night....can't get enough! Need I say that Brayden, Gabby (my namesake), and Maks were ADORABLE??? I can't hear 'ya??? Okay, I'll tell you anyway. They were so precious!!!! All three so over the moon that Santa was coming last night. By the time I left, I was convinced that Santa would be stopping at my house too! (santa sticks...he never showed up here :)
When I walked in the house, I had a gift bag for our newest Steuber...Tucker Steuber, Ryan and Liz's brand new Wheaton Terrior PRECIOUS puppy. Immediately, Brayden wanted to know if that was a present for him. I told him it was for Tucker, then Brayden told me that Tucker was his nickname...okay, okay, maybe you had to be there, but I'm a "Mimi" and everything the kids say is so magical and precious...can't help bragging. **Warning** the bragging is here to stay!
Every one was so happy last night and the kids are such a joy to watch. As sick as I was, it was priceless to spend these special moments with them...as well as with Chris, Danielle, Ryan, Liz and my parents. Of course, there are always so many, from far away, that we wish could be with us to celebrate. They are always in our hearts and still "with" us on Christmas Eve night.
Today, Ryan, Liz and my parents coming for a Christmas Turkey dinner. I couldn't sleep, so at 2:00 am, I made the stuffing, stuffed the turkey, and put the peeled potatoes in the pot for later. Everything else will fall in to place when it gets closer to dinner. Ryan is bringing his delicious sweet potatoes and Liz, her favorite green been casserole.
Chances are, I'll be eating dinner in bed, but that's okay. I love it when everyone is over, no matter what my cost....that is straight from my heart.
Tomorrow will be a rough day, after these past few. Again, I do what I do, knowing the price. If it isn't worth the price, then I do not do it.
This typing is killing me. I am off to bed. With all that I prepared a few hours ago, I will be able to sleep until approximately 3:30 or 4:00... fingers crossed.
Love to everyone and hoping you are all experiencing the magic of the holidays too!
XOXOXO
Gabby
Cathy
When Thanksgiving was approaching, I knew I had to post about how blessed we all are, in one way or several others. Couldn't believe, the day came and went, without a single grateful word! They most definitely are in my heart, but somehow never made it to the blog....not grateful for that!
I have been very sick. It seems I get much sicker these days, with much less exertion than in the past. Because of this, I have been having a hard time sitting at the computer for long periods of time, thus, the lack of posting. If only I could telepathically blog.....and communicate with my friends and family that way too. I would be in chit chat heaven!
Right this moment is a very sick spell, so please disregard sentences that don't make sense, mistyped words and my horrible grammar. So far, it has been impossible getting this much out. I cannot type without going over each word several times...Frustrating?? Yes!!! But so necessary after our beautiful Christmas Eve last night.
Chris and Danielle hosted our Steuber Christmas Eve and it was beautiful and as magical as Christmas Eve should be. Everything was so delicious, pretty, warm and cozy. The most perfect and favorite Christmas songs were playing all night....can't get enough! Need I say that Brayden, Gabby (my namesake), and Maks were ADORABLE??? I can't hear 'ya??? Okay, I'll tell you anyway. They were so precious!!!! All three so over the moon that Santa was coming last night. By the time I left, I was convinced that Santa would be stopping at my house too! (santa sticks...he never showed up here :)
When I walked in the house, I had a gift bag for our newest Steuber...Tucker Steuber, Ryan and Liz's brand new Wheaton Terrior PRECIOUS puppy. Immediately, Brayden wanted to know if that was a present for him. I told him it was for Tucker, then Brayden told me that Tucker was his nickname...okay, okay, maybe you had to be there, but I'm a "Mimi" and everything the kids say is so magical and precious...can't help bragging. **Warning** the bragging is here to stay!
Every one was so happy last night and the kids are such a joy to watch. As sick as I was, it was priceless to spend these special moments with them...as well as with Chris, Danielle, Ryan, Liz and my parents. Of course, there are always so many, from far away, that we wish could be with us to celebrate. They are always in our hearts and still "with" us on Christmas Eve night.
Today, Ryan, Liz and my parents coming for a Christmas Turkey dinner. I couldn't sleep, so at 2:00 am, I made the stuffing, stuffed the turkey, and put the peeled potatoes in the pot for later. Everything else will fall in to place when it gets closer to dinner. Ryan is bringing his delicious sweet potatoes and Liz, her favorite green been casserole.
Chances are, I'll be eating dinner in bed, but that's okay. I love it when everyone is over, no matter what my cost....that is straight from my heart.
Tomorrow will be a rough day, after these past few. Again, I do what I do, knowing the price. If it isn't worth the price, then I do not do it.
This typing is killing me. I am off to bed. With all that I prepared a few hours ago, I will be able to sleep until approximately 3:30 or 4:00... fingers crossed.
Love to everyone and hoping you are all experiencing the magic of the holidays too!
XOXOXO
Cathy
Tuesday, October 23, 2012
My Story For The Chronically Ill Maltese...
I know this blog is supposed to be about chronic illness, but I have really gone off track the past few days. For those that are up to speed, I wanted to give today's update.
Jimmy met with the owners again tonight. The dog is a Maltese and only one year old. They had taken it to Coral Springs Medical Center, which is the most amazing vet/pet hospital I have ever seen. When we brough Moose in, I thought I was on the set of Grey(hound's) Anatomy. I told Jimmy to take me there if I have chest pains. This place is exactly like being in a real hospital and ER....with ridiculously high rates.
Fortunately, they transferred their dog to another vet in Hollywood, which cut the cost by almost half. It appears that we are covered by our homeowners insurance up to $25,000, with a $1,000 deductible. Jimmy has to talk to the woman at the insurance office tomorrow to go over some important questions and confirm that we are covered, since this didn't happen on our property. Jimmy will be going to meet with the family again, tomorrow night.
As for the update above, it has helped put me at ease.
I am concerned for this little 5.2 pound dog. It's funny, but for some reason, we have referred to our last two dogs as "Poochy", when they already had names....or, maybe I should say that I called them Poochy and other terms of endearment too embarrassing to admit. When Jimmy came home from the meeting with the family tonight, after going over the bills, Jimmy now refers to the Maltese as "Moochy"...I had to laugh. Now that we know he is only one and not an older dog, I feel much better about his overall prognosis and recovery. Hoping that he returns to perfect health. I completely understand how their family feels.
Sadly, next on the agenda, is returning Rudy/Poochy to the shelter. He is so lovable and sweet, it breaks my heart. The upside, is that because of his loving and affectionate nature, and being perfectly house trained, I expect he will not be in the shelter for long. In his little bio, they will add that he is not good around small dogs. I am amazed how hard this will be after only three weeks...but, I am a sap...
Today was a rough day physically for me. I had to get some blood work done, so the results will be at my doctor's appointment next Monday. UGH...so hard to have to leave when I am not doing good. When I got to the lab, the parking lot was packed. There are NEVER enough handicapped parking spaces. We live in Florida....half of the spaces should be handicapped!!! I was miserable that I even had to leave the house, feeling as I did. When I got there, it was pretty full and it is sometimes really hard for me to have to wait, if it is too long. Finally the nurse called me back and she was miserable. Not to mention, that I was miserable also, from the time I decided to force myself to get it done today. Regardless, I was so nice to her ( always looking for a conversation :) and she was really rude, one word answers, barely audible comments and never made eye contact.....until, she recognized my purse from my last visit. Then she opened up and was so nice. My mood completely changed, it was so funny. I went in like a lion and came out like a lamb! We practically hugged and kissed, we she was done. As always, back in the car, pj's and bed, as soon as humanly possible. Just relieved that it is over and behind me. In the past, taking blood has been a nightmare, because of my extremely low blood volume. I am in a perpetual state of dehydration. Before going, I was super nauseous, but still had to drink a half a gallon of water to pump up my blood level, so my girlfriend could find a vein. In fact, next month, I am scheduled for a nuclear stress test. Since they are familiar with my condition, and they will have to insert an IV, they told me to drink water excessively, beginning a week ahead of the test.
I have mentioned before, how the nurses and doctor's staff are so often, short and abrasive in their nature. They have no idea that a genuine smile goes such a long way....especially when dealing will very ill patients. I think their often rude and abrupt behavior is inexcusable...especially considering the business they are in. As much as I would love to talk to them about where they are from, how long they have been doing what they are doing, what their favorite restaurant is, etc,(just kidding...no I'm not) I am really only hoping for a simple smile and eye contact when talking.
Again, I know I have completely derailed this blog, due to the last few weeks with Moose, then Rudy. I promise I will get back on track. Hoping sooner, rather than later, but it is hard to tell, since we still have such a big step to take with Rudy.
Time for this sap to get some sleep ~
Jimmy met with the owners again tonight. The dog is a Maltese and only one year old. They had taken it to Coral Springs Medical Center, which is the most amazing vet/pet hospital I have ever seen. When we brough Moose in, I thought I was on the set of Grey(hound's) Anatomy. I told Jimmy to take me there if I have chest pains. This place is exactly like being in a real hospital and ER....with ridiculously high rates.
Fortunately, they transferred their dog to another vet in Hollywood, which cut the cost by almost half. It appears that we are covered by our homeowners insurance up to $25,000, with a $1,000 deductible. Jimmy has to talk to the woman at the insurance office tomorrow to go over some important questions and confirm that we are covered, since this didn't happen on our property. Jimmy will be going to meet with the family again, tomorrow night.
As for the update above, it has helped put me at ease.
I am concerned for this little 5.2 pound dog. It's funny, but for some reason, we have referred to our last two dogs as "Poochy", when they already had names....or, maybe I should say that I called them Poochy and other terms of endearment too embarrassing to admit. When Jimmy came home from the meeting with the family tonight, after going over the bills, Jimmy now refers to the Maltese as "Moochy"...I had to laugh. Now that we know he is only one and not an older dog, I feel much better about his overall prognosis and recovery. Hoping that he returns to perfect health. I completely understand how their family feels.
Sadly, next on the agenda, is returning Rudy/Poochy to the shelter. He is so lovable and sweet, it breaks my heart. The upside, is that because of his loving and affectionate nature, and being perfectly house trained, I expect he will not be in the shelter for long. In his little bio, they will add that he is not good around small dogs. I am amazed how hard this will be after only three weeks...but, I am a sap...
Today was a rough day physically for me. I had to get some blood work done, so the results will be at my doctor's appointment next Monday. UGH...so hard to have to leave when I am not doing good. When I got to the lab, the parking lot was packed. There are NEVER enough handicapped parking spaces. We live in Florida....half of the spaces should be handicapped!!! I was miserable that I even had to leave the house, feeling as I did. When I got there, it was pretty full and it is sometimes really hard for me to have to wait, if it is too long. Finally the nurse called me back and she was miserable. Not to mention, that I was miserable also, from the time I decided to force myself to get it done today. Regardless, I was so nice to her ( always looking for a conversation :) and she was really rude, one word answers, barely audible comments and never made eye contact.....until, she recognized my purse from my last visit. Then she opened up and was so nice. My mood completely changed, it was so funny. I went in like a lion and came out like a lamb! We practically hugged and kissed, we she was done. As always, back in the car, pj's and bed, as soon as humanly possible. Just relieved that it is over and behind me. In the past, taking blood has been a nightmare, because of my extremely low blood volume. I am in a perpetual state of dehydration. Before going, I was super nauseous, but still had to drink a half a gallon of water to pump up my blood level, so my girlfriend could find a vein. In fact, next month, I am scheduled for a nuclear stress test. Since they are familiar with my condition, and they will have to insert an IV, they told me to drink water excessively, beginning a week ahead of the test.
I have mentioned before, how the nurses and doctor's staff are so often, short and abrasive in their nature. They have no idea that a genuine smile goes such a long way....especially when dealing will very ill patients. I think their often rude and abrupt behavior is inexcusable...especially considering the business they are in. As much as I would love to talk to them about where they are from, how long they have been doing what they are doing, what their favorite restaurant is, etc,(just kidding...no I'm not) I am really only hoping for a simple smile and eye contact when talking.
Again, I know I have completely derailed this blog, due to the last few weeks with Moose, then Rudy. I promise I will get back on track. Hoping sooner, rather than later, but it is hard to tell, since we still have such a big step to take with Rudy.
Time for this sap to get some sleep ~
Sunday, October 21, 2012
So upsetting...
We have had so many difficult challenges over the past several years, each time convincing myself that enough is enough....this has to be it...no more. In some cases, I haven't always posted about these not so pleasant events.
Our latest heartbreak is our new little dog, Rudy. We adopted him from the shelter. In a previous post, I believe I mentioned that I had strict criteria...a dog that is a few years old, perfectly house trained, mild mannered and good with kids...check, check, check and check. Ryan was with me and this dog met and exceeded all of our expectations.
Rudy has been as sweet and lovable as we could have hoped for. Without question, he has been the most submissive dog I have ever seen.
On Friday night, Jimmy took Rudy for a walk. They passed a woman with a tiny white toy type dog. Apparently Rudy went for the dog, but Jimmy pulled him back and spoke for a minute with the other dog owner. After pulling him back, Rudy, went behind Jimmy and wiggled himself out of his collar and attacked the little dog. He had the dog in his mouth and was shaking him like a rag doll. Jimmy had to put his hand in Rudy's mouth to unlock him off of the other dog. In the meantime, the little one bit Jimmy.
At this point, the other dog's owner ran down the street, carrying her dog and crying. It was dark out and Jimmy had no idea who she was or where she lived. When Jimmy walked in the door Friday night, I swear he had a look of shock and horror on his face that I had never seen in thirty-one years. Everyone that knows "the saint", can attest that he doesn't exactly have a flair for the dramatic....like some people we know. Jimmy looked like he just witnessed a murder in our driveway. We were both in total shock.
Yesterday, I kept telling Jimmy that he had to find her, to see how their dog was doing. All the while, not expecting that the dog was anything but traumatized...a little naive on my part.
Last night, there was a knock on the door. They had the guard at the gate check the surveillance camera, and the guard told them where we live. They came to our house..the mother, father and young daughter.
They spoke outside, so I wasn't there for the conversation...thank God. Rudy broke their dog's hip in three places and is in the hospital. According to the father, the dog is older and he wanted them to put the dog to sleep. The mother and daughter were distraught and wouldn't allow it...understandably. We were just there three weeks ago with Moose.
We are responsible for one half of the hospital bill. At this point, our half will amount to $4,000...which is the best case scenario, assuming there are no complications. Each additional night in the hospital, is another thousand. I am concerned about his age and recovery. We just went through a very expensive process with Moose, so we know how fast the bill can double and triple.
Needless to say, we will have to return Rudy to the shelter. With this on his record, I expect that no one will adopt him. There is no way to know what triggered this sudden aggression, but then again, we have only had him for three weeks.
With Jimmy's work schedule, he is not available to come with me, to bring the dog back. This is horribly upsetting for both of us...we can barely look at each other. I will be taking him, the next day I am well enough.
All that has happened since Friday has been incredibly emotional, on many levels. Dropping Rudy off is going to be too difficult, but he has to be brought back, nonetheless.
I am sorry to be so heavy...this is probably an example of a time when I shouldn't even post. There are several friends and family that know all about Rudy and this will save me from making many calls.
As far as my condition, I am, without doubt, facing repercussions from the emotions of the past three weeks....I wish I could run away.
Our latest heartbreak is our new little dog, Rudy. We adopted him from the shelter. In a previous post, I believe I mentioned that I had strict criteria...a dog that is a few years old, perfectly house trained, mild mannered and good with kids...check, check, check and check. Ryan was with me and this dog met and exceeded all of our expectations.
Rudy has been as sweet and lovable as we could have hoped for. Without question, he has been the most submissive dog I have ever seen.
On Friday night, Jimmy took Rudy for a walk. They passed a woman with a tiny white toy type dog. Apparently Rudy went for the dog, but Jimmy pulled him back and spoke for a minute with the other dog owner. After pulling him back, Rudy, went behind Jimmy and wiggled himself out of his collar and attacked the little dog. He had the dog in his mouth and was shaking him like a rag doll. Jimmy had to put his hand in Rudy's mouth to unlock him off of the other dog. In the meantime, the little one bit Jimmy.
At this point, the other dog's owner ran down the street, carrying her dog and crying. It was dark out and Jimmy had no idea who she was or where she lived. When Jimmy walked in the door Friday night, I swear he had a look of shock and horror on his face that I had never seen in thirty-one years. Everyone that knows "the saint", can attest that he doesn't exactly have a flair for the dramatic....like some people we know. Jimmy looked like he just witnessed a murder in our driveway. We were both in total shock.
Yesterday, I kept telling Jimmy that he had to find her, to see how their dog was doing. All the while, not expecting that the dog was anything but traumatized...a little naive on my part.
Last night, there was a knock on the door. They had the guard at the gate check the surveillance camera, and the guard told them where we live. They came to our house..the mother, father and young daughter.
They spoke outside, so I wasn't there for the conversation...thank God. Rudy broke their dog's hip in three places and is in the hospital. According to the father, the dog is older and he wanted them to put the dog to sleep. The mother and daughter were distraught and wouldn't allow it...understandably. We were just there three weeks ago with Moose.
We are responsible for one half of the hospital bill. At this point, our half will amount to $4,000...which is the best case scenario, assuming there are no complications. Each additional night in the hospital, is another thousand. I am concerned about his age and recovery. We just went through a very expensive process with Moose, so we know how fast the bill can double and triple.
Needless to say, we will have to return Rudy to the shelter. With this on his record, I expect that no one will adopt him. There is no way to know what triggered this sudden aggression, but then again, we have only had him for three weeks.
With Jimmy's work schedule, he is not available to come with me, to bring the dog back. This is horribly upsetting for both of us...we can barely look at each other. I will be taking him, the next day I am well enough.
All that has happened since Friday has been incredibly emotional, on many levels. Dropping Rudy off is going to be too difficult, but he has to be brought back, nonetheless.
I am sorry to be so heavy...this is probably an example of a time when I shouldn't even post. There are several friends and family that know all about Rudy and this will save me from making many calls.
As far as my condition, I am, without doubt, facing repercussions from the emotions of the past three weeks....I wish I could run away.
Saturday, October 20, 2012
A couple of weights lifted...
First things first...so happy to have finally started writing in my other blog again. I had it going for a while and loved having a place to really get down to the nitty gritty. When I realized that it was the first thing to pop up, when my name was googled, I immediately erased all of the posts. Although, I did save them for myself, for future reference and comparisons. Not that I expect anyone to be googling my name, but I had no idea just how public it was...and easy to access. My thoughts were too revealing to share in such a public forum.
For whatever reason, it has taken me several months to finally start a new one. This time, I was careful to set it to the highest privacy level. This new blog is more private, and I only want others in my shoes, or in a related medical position, to view it. Last night, I contacted those that I knew would truly understand. If I missed anyone, please e-mail me at steubercathy@yahoo.com, and I will make it available. It feels like a weight has been lifted, just knowing I can talk about things that others understandably do not.
A few days ago, I deactivated my Facebook account....another weight lifted! I knew of several readers that would refer to my FB info page for the link to this blog. It was for that reason, that I held on for so long. Like everyone, I joined to connect with some incredibly special friends from my lifetime. I will keep in touch with these gems through e-mail. Aside from that, I have been turned off by reading some of what was written and found it disturbing, in some cases. I never engage in these FB conversations. Nonetheless, they end up on my homepage. That I don't need! It has been a long time coming and it feels good!
Now, this is a case, where a huge weight has been put on our shoulders. I am pretty sure that I mentioned that we adopted a new dog, Rudy. Time is flying, I think it may be almost three weeks already. He is so lovable. Unfortunately, there was an incident tonight that has Jimmy and I reeling. We are seriously considering returning him to the shelter...so upsetting. We will need to make a decision in the immediate future. My sister-in-law, Geri, is the most dog whisperish person I know. Tomorrow, I will have to call and get her thoughts. This is very upsetting for us....it's only been three weeks and I am heartbroken already.
The first week we had Rudy, I took him for a walk...did you hear me??...I took the dog for a walk!!! It was a beautiful day, and he walks so nicely that I thought I would give it a shot. When asked, the doctor at Vanderbilt told me not to go for walks. I love and miss taking walks so much, I had to go for it. Round trip, we walked a half of a mile. Needless to say, when we came home, I had to get in my PJ's and in to bed ASAP. I felt the effects for several days following the walk. I am so envious, when I see people out power walking. That is one of the things I miss most, since getting sick. Prior to everything hitting me, I was walking between four and five miles, just about every day. I was like greased lightening....in my opinion :) I do not regret the walk, and hoping I have another day, in the not too distant future, when I can take a walk again....love it! (it isn't that I cannot walk, it is just too rigorous of an exercise for my condition)
I am looking forward to my next appointment with my endocrinologist. Now that I am giving myself insulin shots, I am surprised that I am not seeing any improvement in my daily blood sugar numbers. Every three days, I increase the dose by two. I began at 5 and am now at 31. In two days, I will no doubt have to up it another two. The last time I met with this dr., Dr. Mohan, he gave me some disturbing numbers (kidney, liver and diabetes AIC) from my latest blood work. I was too shocked to think of questions. I am equipped with a lot of questions and am looking forward to seeing Dr. Mohan, to better understand why everything went drastically downhill, in just a few months.
Last Saturday, I had a complete meltdown...again. I was a blubbering mess for two hours. I had to unload on Poor Jimmy about my condition and worries. After the worst was over, we went to one of our favorite restaurants, Big Bear. I know I always joke about ordering a Long Island Ice Tea, but this time I really did! I sat at the bar and couldn't get the words out fast enough, when the bartender walked up. It was a beautiful night to sit outside. All in all it was just what the doctor ordered. As usual, by the end of the meal, I had to get home and in bed as soon as I could.
I am still going to bed every night, with my plans for "tomorrow". Every "tomorrow", I wake up and know it is just another day, just like all the rest. I guess it doesn't hurt to have plans, just in case.
When Jimmy came home tonight, we didn't have anything in the house to make for dinner. I really wasn't up to going out, but we went to a new chain burger place that just opened, right around the corner. It is called Wayback Burger....two thumbs down :( Just in Coral Springs, we have Five Guys, Smashburger, Elevation Burger, CG Burger and now Wayback. I believe they are all chains. Since it wasn't a good night for me to go out, I just wanted to get in and out ASAP. I ordered a grilled chicken sandwich and it was so rubbery...a rubber chicken...yuck! I asked the girls that work there if it was any good and, in unison, they said..."YES, really great"....missed opportunity..I should have asked them how I looked! I felt like it was a waste of my energy, but Jimmy was happy to get me out of the house. I guess I would have to agree with him. Since leaving this prison is always a self induced prom-night-type-event, I haphazardly (understatement) put on my make-up, my special perfume and earrings...such a joke!
I wish I could say another weight...literal weight... has been lifted. This is a daily struggle for me....morning, noon and night, alone with absolutely no activity...l find myself in the kitchen..."Someone's In The Kitchen With Dinah" yeah, it's me...sorry that ancient song just popped in to my mushy ADD brain!
That wraps it up for tonight. I will write when we know which direction to go with little Rudy :(
For whatever reason, it has taken me several months to finally start a new one. This time, I was careful to set it to the highest privacy level. This new blog is more private, and I only want others in my shoes, or in a related medical position, to view it. Last night, I contacted those that I knew would truly understand. If I missed anyone, please e-mail me at steubercathy@yahoo.com, and I will make it available. It feels like a weight has been lifted, just knowing I can talk about things that others understandably do not.
A few days ago, I deactivated my Facebook account....another weight lifted! I knew of several readers that would refer to my FB info page for the link to this blog. It was for that reason, that I held on for so long. Like everyone, I joined to connect with some incredibly special friends from my lifetime. I will keep in touch with these gems through e-mail. Aside from that, I have been turned off by reading some of what was written and found it disturbing, in some cases. I never engage in these FB conversations. Nonetheless, they end up on my homepage. That I don't need! It has been a long time coming and it feels good!
Now, this is a case, where a huge weight has been put on our shoulders. I am pretty sure that I mentioned that we adopted a new dog, Rudy. Time is flying, I think it may be almost three weeks already. He is so lovable. Unfortunately, there was an incident tonight that has Jimmy and I reeling. We are seriously considering returning him to the shelter...so upsetting. We will need to make a decision in the immediate future. My sister-in-law, Geri, is the most dog whisperish person I know. Tomorrow, I will have to call and get her thoughts. This is very upsetting for us....it's only been three weeks and I am heartbroken already.
The first week we had Rudy, I took him for a walk...did you hear me??...I took the dog for a walk!!! It was a beautiful day, and he walks so nicely that I thought I would give it a shot. When asked, the doctor at Vanderbilt told me not to go for walks. I love and miss taking walks so much, I had to go for it. Round trip, we walked a half of a mile. Needless to say, when we came home, I had to get in my PJ's and in to bed ASAP. I felt the effects for several days following the walk. I am so envious, when I see people out power walking. That is one of the things I miss most, since getting sick. Prior to everything hitting me, I was walking between four and five miles, just about every day. I was like greased lightening....in my opinion :) I do not regret the walk, and hoping I have another day, in the not too distant future, when I can take a walk again....love it! (it isn't that I cannot walk, it is just too rigorous of an exercise for my condition)
I am looking forward to my next appointment with my endocrinologist. Now that I am giving myself insulin shots, I am surprised that I am not seeing any improvement in my daily blood sugar numbers. Every three days, I increase the dose by two. I began at 5 and am now at 31. In two days, I will no doubt have to up it another two. The last time I met with this dr., Dr. Mohan, he gave me some disturbing numbers (kidney, liver and diabetes AIC) from my latest blood work. I was too shocked to think of questions. I am equipped with a lot of questions and am looking forward to seeing Dr. Mohan, to better understand why everything went drastically downhill, in just a few months.
Last Saturday, I had a complete meltdown...again. I was a blubbering mess for two hours. I had to unload on Poor Jimmy about my condition and worries. After the worst was over, we went to one of our favorite restaurants, Big Bear. I know I always joke about ordering a Long Island Ice Tea, but this time I really did! I sat at the bar and couldn't get the words out fast enough, when the bartender walked up. It was a beautiful night to sit outside. All in all it was just what the doctor ordered. As usual, by the end of the meal, I had to get home and in bed as soon as I could.
I am still going to bed every night, with my plans for "tomorrow". Every "tomorrow", I wake up and know it is just another day, just like all the rest. I guess it doesn't hurt to have plans, just in case.
When Jimmy came home tonight, we didn't have anything in the house to make for dinner. I really wasn't up to going out, but we went to a new chain burger place that just opened, right around the corner. It is called Wayback Burger....two thumbs down :( Just in Coral Springs, we have Five Guys, Smashburger, Elevation Burger, CG Burger and now Wayback. I believe they are all chains. Since it wasn't a good night for me to go out, I just wanted to get in and out ASAP. I ordered a grilled chicken sandwich and it was so rubbery...a rubber chicken...yuck! I asked the girls that work there if it was any good and, in unison, they said..."YES, really great"....missed opportunity..I should have asked them how I looked! I felt like it was a waste of my energy, but Jimmy was happy to get me out of the house. I guess I would have to agree with him. Since leaving this prison is always a self induced prom-night-type-event, I haphazardly (understatement) put on my make-up, my special perfume and earrings...such a joke!
I wish I could say another weight...literal weight... has been lifted. This is a daily struggle for me....morning, noon and night, alone with absolutely no activity...l find myself in the kitchen..."Someone's In The Kitchen With Dinah" yeah, it's me...sorry that ancient song just popped in to my mushy ADD brain!
That wraps it up for tonight. I will write when we know which direction to go with little Rudy :(
Tuesday, October 9, 2012
Hanging under the radar...
I just took a second to glance at my previous post. Geez ~ it was about our anniversary. I feel like that was months ago.
The past few weeks have been hard on us. Most of you know that we had to put our dog, Moose, to sleep. SO heartbreaking.
If you have never been through this, or had a special long time pet....delete now! You will think I am completely mental!
We got Moose when he was one and a half, and severely abused. The poor thing was only sixty-five pounds, when he should have been double that. We were lucky enough to have him for approximately ten years. Moose was my sidekick...literally never left my side.
I remember, a few months before getting sick, he jumped on my bed and deliberately spread his 130 pound body across my legs. He had never done that before, and he seemed like he thought about which position would be best. At the time, I thought it was such unusual behavior for him, I even asked myself "is this one of those things they talk about, when dogs sense something is about to happen?". Moose did this over and over for a few weeks, and it was one of those things that made me go "hhhhmm". I knew he had a reason to do this, but didn't understand at the time.
A few months later, my world started to fall apart. Moose was my pal, at a time when I was so incredibly isolated...basically the past seven years. Even when Jimmy would bring him in from a walk, he would check on me before getting a big drink of water.
Beginning the week prior to putting him to sleep, we noticed he was declining and the vet said he had lung cancer and a large mass pushing against his stomach. I couldn't believe that I was losing my pal...I still cannot believe it. He lived a beautiful and long life. We couldn't have asked for more.
Jimmy felt that we should get another dog as soon as possible. SUCH GUILT! Ryan called last Monday, saying he was out and would go with me to the shelter if I was ready. I had been crying all night and, in a split second, agreed to go.
We ended up at a shelter in Davie. This place was huge, with so many dogs. I had very strict criteria, considering my health and Jimmy's long work hours. I asked, and they delivered.
Now we have an adorable lab mix, named Rudy. He loves to be loved (so much so, he is a licker...not loving that...his nickname is Pierre, the French kisser) and is amazingly well behaved...probably due to the fact that he is five years old. I am not crazy in love yet, but I am sure that will come in time. Again...feeling guilty!
I had been very sick since January. These spells happen and will usually last for months. The worst of it finally lifted the week before Moose got sick. Once I realized we would be losing him soon, my adrenaline kicked in, which is never a good sign for me....when the adrenaline stops, I always have hell to pay. As this was going on, I knew, knew, knew that my symptoms would go downhill again...and they did, as of a few days ago.
We'll see how long it lingers this time. Those few short weeks enabled me to be vertical a little longer and in better shape, if I needed to go to the doctors, food store, etc.
So, aside from that, I am constantly trying to work on myself and my outlook on my life. It is a daily battle. My two favorite internet friends, Shari and Vicki, are both very sick as well. They seem to be on the same emotional roller coaster. Finally, it dawned on me that they have both been sick for approximately ten years, and have the same emotional struggles. When I speak to them during their hard times, I think it is natural and completely understand...never thinking they are feeling sorry for themselves. For some reason, I didn't want to allow myself to do the same. I should not expect to live in the land of a cup half full..ice tea glass half full...from long island...full glass... There are times when I really am that way, but I now believe that the emotional struggles are part of the package...another symptom.
The upside to all of this, is that I am going to take the pressure off of myself... trying to be fun loving, while feeling so physically sick. That is impossible, even for a well person. A better way to explain it, is that I will remove the expectation of not letting this all get to me. It is a fact of my life..... as it has been for the past seven years, and it will continue to be so. Thank God I don't have to deal with this every single day. I do have up days and I am always grateful when I feel that way. Days like that are the best!!!! The pity parties will come and go...so be it.....brushing the dust off of my shoulders :)
I am astonished at the amount of hard work and concentration it takes to rise above it. Hoping that allowing my emotions to do their own organic thing, will relieve me of the pressure of trying to hide it. Always a work in progress. Shari recently sent me information on a book devoted to this very issue....how to emotionally deal with a chronic illness. I am going to order it, and will be excited to learn some new tools.
As always, missing my friends/family horribly...such an enormous void in my life. I have been trying to catch up on my phone calls. Wishing, SO much, they were all local so I could see them. There are no words to describe what it would mean to have everyone within reach again. Putting on my ruby slippers...
The past few weeks have been hard on us. Most of you know that we had to put our dog, Moose, to sleep. SO heartbreaking.
If you have never been through this, or had a special long time pet....delete now! You will think I am completely mental!
We got Moose when he was one and a half, and severely abused. The poor thing was only sixty-five pounds, when he should have been double that. We were lucky enough to have him for approximately ten years. Moose was my sidekick...literally never left my side.
I remember, a few months before getting sick, he jumped on my bed and deliberately spread his 130 pound body across my legs. He had never done that before, and he seemed like he thought about which position would be best. At the time, I thought it was such unusual behavior for him, I even asked myself "is this one of those things they talk about, when dogs sense something is about to happen?". Moose did this over and over for a few weeks, and it was one of those things that made me go "hhhhmm". I knew he had a reason to do this, but didn't understand at the time.
A few months later, my world started to fall apart. Moose was my pal, at a time when I was so incredibly isolated...basically the past seven years. Even when Jimmy would bring him in from a walk, he would check on me before getting a big drink of water.
Beginning the week prior to putting him to sleep, we noticed he was declining and the vet said he had lung cancer and a large mass pushing against his stomach. I couldn't believe that I was losing my pal...I still cannot believe it. He lived a beautiful and long life. We couldn't have asked for more.
Jimmy felt that we should get another dog as soon as possible. SUCH GUILT! Ryan called last Monday, saying he was out and would go with me to the shelter if I was ready. I had been crying all night and, in a split second, agreed to go.
We ended up at a shelter in Davie. This place was huge, with so many dogs. I had very strict criteria, considering my health and Jimmy's long work hours. I asked, and they delivered.
Now we have an adorable lab mix, named Rudy. He loves to be loved (so much so, he is a licker...not loving that...his nickname is Pierre, the French kisser) and is amazingly well behaved...probably due to the fact that he is five years old. I am not crazy in love yet, but I am sure that will come in time. Again...feeling guilty!
I had been very sick since January. These spells happen and will usually last for months. The worst of it finally lifted the week before Moose got sick. Once I realized we would be losing him soon, my adrenaline kicked in, which is never a good sign for me....when the adrenaline stops, I always have hell to pay. As this was going on, I knew, knew, knew that my symptoms would go downhill again...and they did, as of a few days ago.
We'll see how long it lingers this time. Those few short weeks enabled me to be vertical a little longer and in better shape, if I needed to go to the doctors, food store, etc.
So, aside from that, I am constantly trying to work on myself and my outlook on my life. It is a daily battle. My two favorite internet friends, Shari and Vicki, are both very sick as well. They seem to be on the same emotional roller coaster. Finally, it dawned on me that they have both been sick for approximately ten years, and have the same emotional struggles. When I speak to them during their hard times, I think it is natural and completely understand...never thinking they are feeling sorry for themselves. For some reason, I didn't want to allow myself to do the same. I should not expect to live in the land of a cup half full..ice tea glass half full...from long island...full glass... There are times when I really am that way, but I now believe that the emotional struggles are part of the package...another symptom.
The upside to all of this, is that I am going to take the pressure off of myself... trying to be fun loving, while feeling so physically sick. That is impossible, even for a well person. A better way to explain it, is that I will remove the expectation of not letting this all get to me. It is a fact of my life..... as it has been for the past seven years, and it will continue to be so. Thank God I don't have to deal with this every single day. I do have up days and I am always grateful when I feel that way. Days like that are the best!!!! The pity parties will come and go...so be it.....brushing the dust off of my shoulders :)
I am astonished at the amount of hard work and concentration it takes to rise above it. Hoping that allowing my emotions to do their own organic thing, will relieve me of the pressure of trying to hide it. Always a work in progress. Shari recently sent me information on a book devoted to this very issue....how to emotionally deal with a chronic illness. I am going to order it, and will be excited to learn some new tools.
As always, missing my friends/family horribly...such an enormous void in my life. I have been trying to catch up on my phone calls. Wishing, SO much, they were all local so I could see them. There are no words to describe what it would mean to have everyone within reach again. Putting on my ruby slippers...
You know who you are... I miss and love you all so much...XO
Sunday, September 16, 2012
Thirty-One Years and Counting...
I have been wanting to write for weeks, but just haven't been up to writing. All the while, I had so much to talk about. Now that I am finally typing away, I know I am going to forget half of what I wanted to say....so, here goes...
A few days ago, Jimmy and I celebrated our 31st anniversary. Every year it is such a special day for us both. Since I've gotten sick, I get anxious as September 13th starts inching its way closer. There are so many ways we would love to celebrate, but we have to be realistic.
Last year, for our thirtieth, I wanted it to be extra special. Again, I am not in a position to enjoy a getaway. We ended up going to a great restaurant "Trulucks", in Ft. Lauderdale. It was such a special place...really delicious. I was so excited about it being our thirtieth, that I was sure my adrenaline would carry me through the dinner. Unfortunately, I ended up lying flat in our big, curved booth. SO EMBARRASSING!!! The waitress was super sweet, and brought table covers for me to use as a pillow. I purposely did not bring in my reclining, power w/c...just not the look I was going for, for such a special night :) I posted on the blog about this last year.
So, as this year rolled (pun intended) around, I knew that wherever we went, I HAD to use my chair :( UGH!!! We went to an amazing new steak house, NYY Steak. The food was incredible, surpassing Ruths Chris, Trulucks and other similar steak places we have tried, over the years.
When we got there, I asked if they could seat us in the most out of the way, inconspicuous spot in the restaurant. I knew eventually I would have to fully recline, with my feet raised. We sat in a little area that we had all to ourselves....couldn't have been more perfect! As expected, I got really sick, before the entrees were brought out. I had to be as horizontal and on my side as possible. Thank God for that chair. I am rarely out in a situation where I need to use it, but when I do, it is a lifesaver.
Dinner was so delicious! I don't know how my taste buds can come back down to earth and common folk food. In the end, it was mission accomplished (I wish I had a big rubber "mission accomplished" stamp) ~ YAY!
Earlier in the day, I had two tests done at Mt. Sinai hospital in Miami. When I went in for my CT scan, the nurse was such a doll. It was really funny. As you can expect, I talk about everything under the sun to anyone that would listen. At one point, she said, "Well, I'm from Pennsylvania"...YAY again! Her name is Beth, and she went to the same college as my daughter-in-law, Liz. Mt. Sinai is an hour south of where we live. As it turns out, she lives a mile down the street from me. Now, this is the exciting part. I cannot remember what I was saying, but I only remember her answer...cough, cough..she said "oh, you're too cool for that"....feel free to read that over and over! Cool...my best friend Beth said I was not only cool, but too cool. The last time I heard that was...hhhhmm...NEVER! I should have had her put it in writing. All this excitement, and she was probably talking about my body temperature. She shops at our food store, so next time I go, my head will be doing the Linda Blair 360. I am lame..., no, make that too lame. Anyway, it was really funny because we kissed and hugged when I was done...X & O!
So, that's it for my anniversary day. Other than that, my emotions are on a never ending roller coaster. I work hard at keeping my chin up, but there are times when it gets really difficult...which brings me to a sweet story...
Katie Couric has a new talk show that began last week. The show is so/so, but I have every episode set to record, for now. One of her guests was Aimee Copeland. Aimee is the girl that went through hell with the flesh eating bacteria. She lost both forearms and legs. I knew she was on, but didn't watch. To be honest, I thought it would be too depressing. Aimee was also on one of the morning news shows, and I read that she was incredibly inspirational. Because of that, and having it recorded, I decided to watch.
WOW, this girl is absolutely amazing. It all began in May, so it is still very recent. I really hope she writes a book, and that it becomes required reading for teenagers.
During the interview, Katie was asking her, basically, how she deals with all that has happened to her. Aimee went on to say how grateful she is for her wonderful family and discussed her plans for the future. Also, she will be finishing her masters in psychology in May. Aimee plans on starting an organization that helps amputees (children, adults, vets) get back things that they thought they lost forever, like hiking, skiing, etc. Katie was in such awe of her, as was I. Katie said "so, what you do not have is eclipsed by what you do have". I had to immediately write that down, so I could post it here in her exact words....perfect words.
At another point in the interview, Katie was talking to Aimee about her disability and Aimee interrupted her and said, "I don't consider myself disabled, I just have different abilities". I have to say, Aimee drop kicked me out of my pity party. As I said earlier, I am always struggling to keep my head above water. After seeing Aimee, she made it that much easier for me. Thanks Aimee! I am a super fan!!
A few days ago, Jimmy and I celebrated our 31st anniversary. Every year it is such a special day for us both. Since I've gotten sick, I get anxious as September 13th starts inching its way closer. There are so many ways we would love to celebrate, but we have to be realistic.
Last year, for our thirtieth, I wanted it to be extra special. Again, I am not in a position to enjoy a getaway. We ended up going to a great restaurant "Trulucks", in Ft. Lauderdale. It was such a special place...really delicious. I was so excited about it being our thirtieth, that I was sure my adrenaline would carry me through the dinner. Unfortunately, I ended up lying flat in our big, curved booth. SO EMBARRASSING!!! The waitress was super sweet, and brought table covers for me to use as a pillow. I purposely did not bring in my reclining, power w/c...just not the look I was going for, for such a special night :) I posted on the blog about this last year.
So, as this year rolled (pun intended) around, I knew that wherever we went, I HAD to use my chair :( UGH!!! We went to an amazing new steak house, NYY Steak. The food was incredible, surpassing Ruths Chris, Trulucks and other similar steak places we have tried, over the years.
When we got there, I asked if they could seat us in the most out of the way, inconspicuous spot in the restaurant. I knew eventually I would have to fully recline, with my feet raised. We sat in a little area that we had all to ourselves....couldn't have been more perfect! As expected, I got really sick, before the entrees were brought out. I had to be as horizontal and on my side as possible. Thank God for that chair. I am rarely out in a situation where I need to use it, but when I do, it is a lifesaver.
Dinner was so delicious! I don't know how my taste buds can come back down to earth and common folk food. In the end, it was mission accomplished (I wish I had a big rubber "mission accomplished" stamp) ~ YAY!
Earlier in the day, I had two tests done at Mt. Sinai hospital in Miami. When I went in for my CT scan, the nurse was such a doll. It was really funny. As you can expect, I talk about everything under the sun to anyone that would listen. At one point, she said, "Well, I'm from Pennsylvania"...YAY again! Her name is Beth, and she went to the same college as my daughter-in-law, Liz. Mt. Sinai is an hour south of where we live. As it turns out, she lives a mile down the street from me. Now, this is the exciting part. I cannot remember what I was saying, but I only remember her answer...cough, cough..she said "oh, you're too cool for that"....feel free to read that over and over! Cool...my best friend Beth said I was not only cool, but too cool. The last time I heard that was...hhhhmm...NEVER! I should have had her put it in writing. All this excitement, and she was probably talking about my body temperature. She shops at our food store, so next time I go, my head will be doing the Linda Blair 360. I am lame..., no, make that too lame. Anyway, it was really funny because we kissed and hugged when I was done...X & O!
So, that's it for my anniversary day. Other than that, my emotions are on a never ending roller coaster. I work hard at keeping my chin up, but there are times when it gets really difficult...which brings me to a sweet story...
Katie Couric has a new talk show that began last week. The show is so/so, but I have every episode set to record, for now. One of her guests was Aimee Copeland. Aimee is the girl that went through hell with the flesh eating bacteria. She lost both forearms and legs. I knew she was on, but didn't watch. To be honest, I thought it would be too depressing. Aimee was also on one of the morning news shows, and I read that she was incredibly inspirational. Because of that, and having it recorded, I decided to watch.
WOW, this girl is absolutely amazing. It all began in May, so it is still very recent. I really hope she writes a book, and that it becomes required reading for teenagers.
During the interview, Katie was asking her, basically, how she deals with all that has happened to her. Aimee went on to say how grateful she is for her wonderful family and discussed her plans for the future. Also, she will be finishing her masters in psychology in May. Aimee plans on starting an organization that helps amputees (children, adults, vets) get back things that they thought they lost forever, like hiking, skiing, etc. Katie was in such awe of her, as was I. Katie said "so, what you do not have is eclipsed by what you do have". I had to immediately write that down, so I could post it here in her exact words....perfect words.
At another point in the interview, Katie was talking to Aimee about her disability and Aimee interrupted her and said, "I don't consider myself disabled, I just have different abilities". I have to say, Aimee drop kicked me out of my pity party. As I said earlier, I am always struggling to keep my head above water. After seeing Aimee, she made it that much easier for me. Thanks Aimee! I am a super fan!!
Saturday, August 25, 2012
First, the bad news...
...I am sure that anyone reading this blog has been on the edge of their seats waiting to hear how much I won in the lottery. No luck :( I guess it is not as easy as just buying a ticket and wishing on a star.
Something is going on with my computer and it is driving me crazy. It will not allow me to use apostrophes or quotation marks. I have to say that I am really missing all my contractions. This feels so formal and more Kings Englishish. Such an old lady I have become! I am sure it is just a matter of hitting a button on the keyboard, but I do not (aka dont) want to make matters worse.
Since I wrote, I finally called the Mayo Clinic/Jacksonville to set up an appointment with that great neurologist, Elizabeth Shuster. She is so backed up, that they will not (wont) call to talk about an appointment until early 2013. That was a disappointment, but it really is not an emergency....and she is worth the wait. In a few weeks, I am going back to that wacky neurologist at the University of Miami. I know I am nuts, but he is just going to check to see how my blood vessels are pulsating behind my eyes. This gives him an indication of how my high csf pressure is getting.
Also, since my last post, I had to start with daily insulin injections. UGH! I was so upset that my A1C jumped from 8.1 to 10.5. In the past months, I have been more conscious of what I was eating and thought for sure the number would have gone down, if only a little. My endocrinologist said that it is a progressive disease and not my fault....although, I still feel completely responsible. Also, he said that there is something going on with my kidneys, early stages of kidney disease. That, I could do without. I will see him in a few months to check my numbers again. I was recently telling Vickie, my friend from Seattle, that I feel like I am made of velcro and seem to be picking up new health issues as I roll along. Everything is jumping and clinging to my velcro innards. At this point, I have five different autoimmune issues, with one yet to be diagnosed.
I am now taking the shots every night. I am shocked at how painless they are. Most times I cannot feel a thing. Not sure if it is that way for everyone, or due to my overall numbness. Regardless, it really is not a big deal at all. In the meantime, I am working harder on eating the appropriate foods . Hopefully, I will be able to turn this around and eventually go off of the insulin.
Like always, it has been so long since my last post. I think of coming on every day, but I have been too sick and embarrassingly, too miserable. Even if I did feel well enough to sit at the computer, my mindset has not been anything I felt like dumping on to you......aaaaaand, you are welcome...
In my last post, I mentioned that we were about to celebrate my sweetest little grandson, Maks second birthday. The birthday party was so much fun. Chris went to a geeenuuuuiiiiine (genuine) Philly Pretzel place down here, so we were all in Philly heaven. It was hard when I got home, and the following day, but it was SO worth it.
My son, Phil and his wife, called me a few weeks ago from Charleston. They told me that they were having a special vow renewal at my son, Ryans house. Phil only had two weeks notice, from the Coast Guard, that he could get away for the long weekend, so it was very last minute and exciting.
The vow renewal was last Saturday and so special. My parents, Ryan/Liz, Chris/Danielle and Lauras brother and his g/f were not at the first wedding one and a half years ago. I was so happy that Phil and Laura were able to share their commitment to each other in front their brothers and my parents. It was a beautiful day for all of us. Luckily, Ryan and Liz have a really comfortable bed, that I escaped to from time to time....that is, until I could overhear conversations that I just HAD to be part of, then I would join everyone again. Phil and Ryan prepared the food and it was delicious..... Chris brought more geeenuuuiiine Philly Pretzels... They also had a little wedding cake. Their first wedding was so simple, they did not even have a cake....so that was the icing on the cake.
About my doctors, I have a lot of appointments coming up. Next week, I will have a CT scan of my aneurysm to see if it has grown, as well as an echo of my aortic valve. After that, I have several more appointments scheduled. Whatever happened to house calls???
Yesterday, I had to go to Walgreens. For me, this was a major happening and social event. I even put on make-up, earrings and new clothes. How sick is that? All because I was going to leave these four walls for twenty minutes. I got in the car, backed out at my normal high speed and rammed right in to my neighbors parked car. UGH! SO upsetting....but, I immediately went to their house and the owner was home. He is the nicest man, but I felt horrible. It was a brand new Lexus and he is so particular about it. I can still hear the horrible sound of the crunch :( At the end of the day, I know it is not the end of the world. Insurance is taking over and running with it. I want to think of something I could do for this guy, to apologize for the inconvenience of him having his car in the shop and all that jazz. Unfortunately, I really do not know him. I will have to think of something. Wait a minute...come to think of it, he never mentioned my earrings OR lipstick OR new clothes....and I thought he was so nice...
He was going in and out of his house making copies of my drivers license and insurance card. He went in twice and each time he was gone for almost half an hour. The heat was unbearable with my ridiculously low heat intolerance. I could not breathe waiting for him to come back out. With my car just idling, the a/c did not really pump any cold air out. For me, that was all too much, so I went in the house, took off my earrings and back to bed. Jimmy ended up picking up my medications. A month or two ago, I sideswiped the guardrail down the street and blew out a tire. The sideswipe happened on a day that I was not really well enough to go out. I am sure that yesterdays accident had nothing to do with my condition. If there is a third driving issue, I guess I will have to rethink if I should still drive or not. For now, I am trying to think positive. I am so happy that I am all alone right now, because there are too many of you that would have a lot to say about my driving skills. (When Phil was a teenager, he once got in the back seat of my car with a hard hat on..I thought I was seeing things when I looked in my rear view mirror...so funny :) For years, I said I had a protective bubble around my car, because it was a miracle I was not in an accident every single day. Apparently, the bubble has burst.
For those of you that know Anita, I recently received a long, funny letter from her. It was so great to be back in touch. As Rick used to say at the shore, Anita towel. I still have to get back to hear more about what is going on back on Garfield Avenue.
For several months I have been very depressed. It has been so difficult trying to navigate my way through my problems....really difficult. Earlier today, I had a long conversation with someone very special. I called, only to ask one question. Somehow..whoever was driving the train...drove the conversation directly to all that I am struggling with. I wonder who that driver was....hhmmm...must have been a bad driver.
Anyway, this very special person that I was talking to today, helped me in a lot of ways. I am not going to mention who it was, but he/she is an unbelievable support for me. If anyone reading is in the same boat as me, struggling to come to terms with multiple progressive illnesses, feel free to contact me. I would love to share my conversation with anyone that needs help in that area.
Today, I cried and cried, then turned things around to take my focus off of me, myself and I and called Shari, another one of my very sick friends. That was fun. From the way my day began, I would never have expected to say anything was fun.
I feel like Jimmy came home to a house that was a little less dark than usual and that was a good thing. Here comes my ADD, speaking of Jimmy, I mentioned, in my last post, that he was going up north with my father to see the Phillies play. He had the best little getaway with John, Lisa, Nancy, Dave, Geri, Laura, Paul, Dan, Mrs. McDowell and my cousins, Mike and Irene. It was just what the doctor ordered. Everyone went out of their way to make this trip so special. My prison is his prison, so I really think Jimmy needs his head examined for coming home. So happy that he had such a fun and meaningful escape. Oh, and for those from home...he brought home the most amazing cream donuts from L & M and incredible Jersey Tomatoes!!! I was like a little kid going through his bags the second he walked in the door.
I did not realize that I had so much to say...but, I guess that is a lie! There is plenty more where this came from. I hope to be back soon...with apostrophes and quotation marks!!!
Something is going on with my computer and it is driving me crazy. It will not allow me to use apostrophes or quotation marks. I have to say that I am really missing all my contractions. This feels so formal and more Kings Englishish. Such an old lady I have become! I am sure it is just a matter of hitting a button on the keyboard, but I do not (aka dont) want to make matters worse.
Since I wrote, I finally called the Mayo Clinic/Jacksonville to set up an appointment with that great neurologist, Elizabeth Shuster. She is so backed up, that they will not (wont) call to talk about an appointment until early 2013. That was a disappointment, but it really is not an emergency....and she is worth the wait. In a few weeks, I am going back to that wacky neurologist at the University of Miami. I know I am nuts, but he is just going to check to see how my blood vessels are pulsating behind my eyes. This gives him an indication of how my high csf pressure is getting.
Also, since my last post, I had to start with daily insulin injections. UGH! I was so upset that my A1C jumped from 8.1 to 10.5. In the past months, I have been more conscious of what I was eating and thought for sure the number would have gone down, if only a little. My endocrinologist said that it is a progressive disease and not my fault....although, I still feel completely responsible. Also, he said that there is something going on with my kidneys, early stages of kidney disease. That, I could do without. I will see him in a few months to check my numbers again. I was recently telling Vickie, my friend from Seattle, that I feel like I am made of velcro and seem to be picking up new health issues as I roll along. Everything is jumping and clinging to my velcro innards. At this point, I have five different autoimmune issues, with one yet to be diagnosed.
I am now taking the shots every night. I am shocked at how painless they are. Most times I cannot feel a thing. Not sure if it is that way for everyone, or due to my overall numbness. Regardless, it really is not a big deal at all. In the meantime, I am working harder on eating the appropriate foods . Hopefully, I will be able to turn this around and eventually go off of the insulin.
Like always, it has been so long since my last post. I think of coming on every day, but I have been too sick and embarrassingly, too miserable. Even if I did feel well enough to sit at the computer, my mindset has not been anything I felt like dumping on to you......aaaaaand, you are welcome...
In my last post, I mentioned that we were about to celebrate my sweetest little grandson, Maks second birthday. The birthday party was so much fun. Chris went to a geeenuuuuiiiiine (genuine) Philly Pretzel place down here, so we were all in Philly heaven. It was hard when I got home, and the following day, but it was SO worth it.
My son, Phil and his wife, called me a few weeks ago from Charleston. They told me that they were having a special vow renewal at my son, Ryans house. Phil only had two weeks notice, from the Coast Guard, that he could get away for the long weekend, so it was very last minute and exciting.
The vow renewal was last Saturday and so special. My parents, Ryan/Liz, Chris/Danielle and Lauras brother and his g/f were not at the first wedding one and a half years ago. I was so happy that Phil and Laura were able to share their commitment to each other in front their brothers and my parents. It was a beautiful day for all of us. Luckily, Ryan and Liz have a really comfortable bed, that I escaped to from time to time....that is, until I could overhear conversations that I just HAD to be part of, then I would join everyone again. Phil and Ryan prepared the food and it was delicious..... Chris brought more geeenuuuiiine Philly Pretzels... They also had a little wedding cake. Their first wedding was so simple, they did not even have a cake....so that was the icing on the cake.
About my doctors, I have a lot of appointments coming up. Next week, I will have a CT scan of my aneurysm to see if it has grown, as well as an echo of my aortic valve. After that, I have several more appointments scheduled. Whatever happened to house calls???
Yesterday, I had to go to Walgreens. For me, this was a major happening and social event. I even put on make-up, earrings and new clothes. How sick is that? All because I was going to leave these four walls for twenty minutes. I got in the car, backed out at my normal high speed and rammed right in to my neighbors parked car. UGH! SO upsetting....but, I immediately went to their house and the owner was home. He is the nicest man, but I felt horrible. It was a brand new Lexus and he is so particular about it. I can still hear the horrible sound of the crunch :( At the end of the day, I know it is not the end of the world. Insurance is taking over and running with it. I want to think of something I could do for this guy, to apologize for the inconvenience of him having his car in the shop and all that jazz. Unfortunately, I really do not know him. I will have to think of something. Wait a minute...come to think of it, he never mentioned my earrings OR lipstick OR new clothes....and I thought he was so nice...
He was going in and out of his house making copies of my drivers license and insurance card. He went in twice and each time he was gone for almost half an hour. The heat was unbearable with my ridiculously low heat intolerance. I could not breathe waiting for him to come back out. With my car just idling, the a/c did not really pump any cold air out. For me, that was all too much, so I went in the house, took off my earrings and back to bed. Jimmy ended up picking up my medications. A month or two ago, I sideswiped the guardrail down the street and blew out a tire. The sideswipe happened on a day that I was not really well enough to go out. I am sure that yesterdays accident had nothing to do with my condition. If there is a third driving issue, I guess I will have to rethink if I should still drive or not. For now, I am trying to think positive. I am so happy that I am all alone right now, because there are too many of you that would have a lot to say about my driving skills. (When Phil was a teenager, he once got in the back seat of my car with a hard hat on..I thought I was seeing things when I looked in my rear view mirror...so funny :) For years, I said I had a protective bubble around my car, because it was a miracle I was not in an accident every single day. Apparently, the bubble has burst.
For those of you that know Anita, I recently received a long, funny letter from her. It was so great to be back in touch. As Rick used to say at the shore, Anita towel. I still have to get back to hear more about what is going on back on Garfield Avenue.
For several months I have been very depressed. It has been so difficult trying to navigate my way through my problems....really difficult. Earlier today, I had a long conversation with someone very special. I called, only to ask one question. Somehow..whoever was driving the train...drove the conversation directly to all that I am struggling with. I wonder who that driver was....hhmmm...must have been a bad driver.
Anyway, this very special person that I was talking to today, helped me in a lot of ways. I am not going to mention who it was, but he/she is an unbelievable support for me. If anyone reading is in the same boat as me, struggling to come to terms with multiple progressive illnesses, feel free to contact me. I would love to share my conversation with anyone that needs help in that area.
Today, I cried and cried, then turned things around to take my focus off of me, myself and I and called Shari, another one of my very sick friends. That was fun. From the way my day began, I would never have expected to say anything was fun.
I feel like Jimmy came home to a house that was a little less dark than usual and that was a good thing. Here comes my ADD, speaking of Jimmy, I mentioned, in my last post, that he was going up north with my father to see the Phillies play. He had the best little getaway with John, Lisa, Nancy, Dave, Geri, Laura, Paul, Dan, Mrs. McDowell and my cousins, Mike and Irene. It was just what the doctor ordered. Everyone went out of their way to make this trip so special. My prison is his prison, so I really think Jimmy needs his head examined for coming home. So happy that he had such a fun and meaningful escape. Oh, and for those from home...he brought home the most amazing cream donuts from L & M and incredible Jersey Tomatoes!!! I was like a little kid going through his bags the second he walked in the door.
I did not realize that I had so much to say...but, I guess that is a lie! There is plenty more where this came from. I hope to be back soon...with apostrophes and quotation marks!!!
Saturday, August 4, 2012
And the beat goes on...
It is hard to believe that I haven't written in three weeks. Time and time again, I come on and say how much I do not want to complain...endlessly. These days, if I weren't writing about how things are honestly going, this page would be blank. Did that sentence make sense??? I don't think it did.
So, as you have probably guessed, it has been insanely bad for the last several months. UGH!! Since getting sick, my worst spell lasted around nine months and it straddled right over Ryan and Liz's wedding, which was almost three years ago. Everyone that knows me, knows that I was unable to make the trip to Lancaster and missed their wedding. Oh, my eyes are brimming with tears just thinking about that day.....sooo, anyway, I was horribly sick. At some point, I gradually improved somewhat. The last several months have put me back in that same, horrible condition. I just cannot believe how much worse I am.
What I am going through now is really unbearable and so hard to describe. I usually tell friends/family to think of how you feel when you have the worst case of the flu ever, when you have to get in bed and you can't believe how sick you are. Every muscle hurting, horrible nausea, too sick to think...it's kind of like that, and most times much worse, with no end. Obviously, you wouldn't be making calls and catching up, or even answering e-mails. I have to laugh when I think of the old Bette Davis movies, when she was dying. They had her in a beautiful silk nightgown and robe, sitting up in her beautiful canopy bed, with silky blankets and pillows...of course, full hair and make up and a non stop stream of well wishers stopping in to see her...and she still managed to get in trouble! If only that's what "stuck in bed" looked like!
I read my last post, to bring myself up to date :)...In it, I mentioned that I would be scheduling an appointment with that great neurologist, at Mayo/Jacksonville. As hard as this would be for a well person to imagine, I haven't been up to making that call. There are a few other calls I need to make, doctor/health related, and I just can't seem to be clear headed enough during business hours. Many days, I don't get to sleep until the sun comes up, then I end up sleeping well in to the afternoon. Every single day, I tell myself, definitely tomorrow....tomorrow, tomorrow....I'll call 'ya tomorrow, it's only a day away..speaking of, my hair is looking like Annie's, but that's another story...
I don't know what is going on with my muscles. It is much more than fatigue/weakness. Earlier today, when it was especially bad, I felt like something was going on, deep in my muscles that causes the fatigue/weakness. I've been trying to explain this for years. It was kind of like a revelation when it hit me, and will better help me explain this particular symptom when I go to Mayo. Regarding my muscles, I usually just tell the doctors about the extreme weakness and fatigue, but it really is much more than that and hard to articulate.
I have a few appointments coming up soon. If anything earth shattering comes up, I'll post about it. I dread appointment days! They take so much out of me.
Poor/Saint Jimmy will be going home next week and I am SO jealous!!! My brother has great tickets for the Phillies. Jimmy will get to see the new (to us) Phil's stadium. We have heard that it is beautiful! My father is going up with him. Hopefully, they will have perfect weather for the game. He'll also get to spend time with his brother, Dave and Geri. I know he is going to have the best time catching up with our nephews and niece too. Oh, I want to go too...so much it hurts.
So, even though I won't be going, I'm really happy for Jimmy. I know it is going to be the perfect getaway...in fact, I should check to see if he has a return flight!
Tomorrow (Sat.), we'll be going to Chris and Danielle's to celebrate my grandson's second birthday! Unfortunately, I was too sick to go to Brayden's in June, and hoping for the best for Maks' party. I have to go and get me some sugar! The last time I saw them, Brayden (five years old) told me to text him the next time I have popcorn...he is so funny! If I do go, and get horribly sick tomorrow night, which is expected, it is another case where it is so worth it. I need to grab on to the brass ring whenever possible.
I wish I felt well enough to post twice per week. Since it has been almost three weeks, and before paying the piper for Maks' birthday party, I thought I would squeak this one out. Back to bed to play my turn in a few Words With Friends games I have going on, then hoping to get to sleep soon.
Before I go, I have to say that I am super excited. I rarely buy lottery tickets, but I have two for tomorrow night. I am expecting to win, so expect an announcement in my next post! In day dreaming about what I would do with $150,000,000, I realized that, in the end, I would still be as sick as I am, with as little "life" as I have...that stinks. Jimmy could quit his job and golf, as the Beatles would say, "Eight Days A Week". So, looking forward to picking up the check...I think I'll be feeling pretty good that day!
So, as you have probably guessed, it has been insanely bad for the last several months. UGH!! Since getting sick, my worst spell lasted around nine months and it straddled right over Ryan and Liz's wedding, which was almost three years ago. Everyone that knows me, knows that I was unable to make the trip to Lancaster and missed their wedding. Oh, my eyes are brimming with tears just thinking about that day.....sooo, anyway, I was horribly sick. At some point, I gradually improved somewhat. The last several months have put me back in that same, horrible condition. I just cannot believe how much worse I am.
What I am going through now is really unbearable and so hard to describe. I usually tell friends/family to think of how you feel when you have the worst case of the flu ever, when you have to get in bed and you can't believe how sick you are. Every muscle hurting, horrible nausea, too sick to think...it's kind of like that, and most times much worse, with no end. Obviously, you wouldn't be making calls and catching up, or even answering e-mails. I have to laugh when I think of the old Bette Davis movies, when she was dying. They had her in a beautiful silk nightgown and robe, sitting up in her beautiful canopy bed, with silky blankets and pillows...of course, full hair and make up and a non stop stream of well wishers stopping in to see her...and she still managed to get in trouble! If only that's what "stuck in bed" looked like!
I read my last post, to bring myself up to date :)...In it, I mentioned that I would be scheduling an appointment with that great neurologist, at Mayo/Jacksonville. As hard as this would be for a well person to imagine, I haven't been up to making that call. There are a few other calls I need to make, doctor/health related, and I just can't seem to be clear headed enough during business hours. Many days, I don't get to sleep until the sun comes up, then I end up sleeping well in to the afternoon. Every single day, I tell myself, definitely tomorrow....tomorrow, tomorrow....I'll call 'ya tomorrow, it's only a day away..speaking of, my hair is looking like Annie's, but that's another story...
I don't know what is going on with my muscles. It is much more than fatigue/weakness. Earlier today, when it was especially bad, I felt like something was going on, deep in my muscles that causes the fatigue/weakness. I've been trying to explain this for years. It was kind of like a revelation when it hit me, and will better help me explain this particular symptom when I go to Mayo. Regarding my muscles, I usually just tell the doctors about the extreme weakness and fatigue, but it really is much more than that and hard to articulate.
I have a few appointments coming up soon. If anything earth shattering comes up, I'll post about it. I dread appointment days! They take so much out of me.
Poor/Saint Jimmy will be going home next week and I am SO jealous!!! My brother has great tickets for the Phillies. Jimmy will get to see the new (to us) Phil's stadium. We have heard that it is beautiful! My father is going up with him. Hopefully, they will have perfect weather for the game. He'll also get to spend time with his brother, Dave and Geri. I know he is going to have the best time catching up with our nephews and niece too. Oh, I want to go too...so much it hurts.
So, even though I won't be going, I'm really happy for Jimmy. I know it is going to be the perfect getaway...in fact, I should check to see if he has a return flight!
Tomorrow (Sat.), we'll be going to Chris and Danielle's to celebrate my grandson's second birthday! Unfortunately, I was too sick to go to Brayden's in June, and hoping for the best for Maks' party. I have to go and get me some sugar! The last time I saw them, Brayden (five years old) told me to text him the next time I have popcorn...he is so funny! If I do go, and get horribly sick tomorrow night, which is expected, it is another case where it is so worth it. I need to grab on to the brass ring whenever possible.
I wish I felt well enough to post twice per week. Since it has been almost three weeks, and before paying the piper for Maks' birthday party, I thought I would squeak this one out. Back to bed to play my turn in a few Words With Friends games I have going on, then hoping to get to sleep soon.
Before I go, I have to say that I am super excited. I rarely buy lottery tickets, but I have two for tomorrow night. I am expecting to win, so expect an announcement in my next post! In day dreaming about what I would do with $150,000,000, I realized that, in the end, I would still be as sick as I am, with as little "life" as I have...that stinks. Jimmy could quit his job and golf, as the Beatles would say, "Eight Days A Week". So, looking forward to picking up the check...I think I'll be feeling pretty good that day!
Sunday, July 15, 2012
The doctor says to...
...put the lime in the coconut, mix it all up. I think that is the one thing I haven't tried....and I think I would like that doctor.
Over the past several weeks, I feel like I have been doing nothing but sing the blues. Honestly, that is the last thing I want to do...especially on such a regular basis. In an effort to keep this honest and true, I have decided to just tell it like it is, hoping better times are just around the corner, especially once the lime and coconut take effect.
A few posts ago, I spoke about that horrible appointment I had with my Neurologist. It was outrageous and left me shocked. He clearly seemed to be dealing with some type of mental issue, from his constant contradictions and telling me that he thinks I am mentally ill for wanting to be diagnosed?!? He said he would not want a diagnosis. The worst, was when he walked me to the receptionists desk and told me that I would talk to him differently, if I knew what was going on in his private life. Since then, we had a phone call to discuss a test, and he was manic and not making sense, sounding like a little boy with a great new idea. He had two of my issues confused, and I didn't bother correcting him.
My friend Vicki waited eight long years to finally get her diagnosis of MS. Like the rest of us, she spent eight years going from doctor to doctor, each time hoping this will be the "one". During one of her appointments, pre-diagnosis, she was upset and telling the doctor her symptoms...which are scary. He actually burst out laughing at her. Vicki's husband was so upset, he called the president of the hospital and he in turn had the doctor call Vicki to apologize. Needless to say, Vicki didn't go back. Without asking, I know Vicki has many more similar stories, as would my friend Shari. It comes with the territory of chronic illness.
As much as I dreaded the thought of seeing a new doctor, I knew I couldn't stay with this guy. I decided to see a Neurologist that I had seen when I first got sick, seven years ago. To say that he is icy cold is an understatement. Not knowing where else to go, I thought I would give him one more shot.... especially, since I have had more things diagnosed since our last visit, several years ago. UGH!!!! Big mistake! He was so dismissive...something you would have to see to believe. My reason for seeing him was to get back to working on what happened with my immune system seven years ago that kicked things off and continue to worsen. He told me that maybe I should lose weight...or take a walk...if I am depressed, maybe I should take medication. It was UNBELIEVABLE!!!! It was sickening from beginning, through our five minute discussion, to the end.
If any of you have seen Mystery Diagnosis, you would know what I am talking about. They had so many episodes, with patients desperate as I am, being told the exact same things. Unfortunately, for most of the patients from the show, it took them many years to finally find someone to listen. Sadly, that is the norm for patients like myself.
Now I am in a position of not having a Neurologist. I have so few options. It is most definitely true that the worst doctors are indeed in Florida. I wish I could snap my fingers (two snaps and a circle) and be back at the University Of Pennsylvania, where all my doctors were prior to moving. I saw several specialists and they were all amazing, brilliant and cared. As much as I would love to go up, it is too complicated, for many reasons. I don't see that happening, at least for the time being.
Several years ago, I saw a woman at the Mayo Clinic/Jacksonville. She was around my age and very bright. She didn't have luck in figuring out my puzzle, but it wasn't for lack of trying. When I left her office, she asked me to call her when I get my answer. She knew it was something, but couldn't identify it. Since that visit, I have had new positive test results and diagnoses of addition problems. I believe they are stemming off of my original problem from seven years ago, which continues to this day. I expect to set up an appointment on Monday. I am sure it wouldn't be for a few months. That will give me time to see if I can come up with an alternate plan.
This process, after seven years, is exhausting and disheartening. As much as I want to wave the white flag, I am holding off for now. This is another post that will be understood by my sick friends..for my well friends, I hope you have taken a speed reading course! I decided not to dwell on the extent of my symptoms...you're welcome!
On the flip side of "Lady Sings the Blues", is my visit with my precious little grandchildren the other day. I could just look at their sweet little faces for hours and hours. They are all such love bugs, so affectionate and loving. I love them to pieces! I know it sounds so cheesy and cornball, but they really do make my heart smile...really, they do! I would give absolutely anything to be able to pick them up and take them to the beach or park, visit to my parents, stop for ice cream of course, then back to my house for a sleepover. That is what my dreams are made of...which reminds me...back to bed...
I was on the phone with Ceal the other day. She was telling me that she enjoys my blog, and laughing saying that it is a lot different than the letters I sent to her from Long Beach Island and she sent me from Cape May when we were in seventh and eighth grade. Ceal reminded me that I ended every letter with a huge S, with three small lines coming off of it...Sorry So Sloppy...and I told Ceal that I never mention "boys" in my blog...wha' happened?? I liked my old letters better! Since, I'm not bothering to proof read this, one more time, I can say....Sorry So Sloppy :)
Friday, July 6, 2012
Woe no, here she comes...
Yes, yes, yes....same me and same story. After writing the last several posts, I felt like I have been getting too heavy..especially for those that are not sick. I really do need to set up the private, invitation only, blog for those that are in my position. I have so much to talk about...need to talk about, but I do not want to to inflict this type of conversation on my family and friends.
I hear from readers of the blog through e-mail for the most part. Once in a blue moon, I'll get messages at the bottom of a post. The last post I had written, concerned me with its heaviness. In the end, I decided to let it be, because it is me being honest.
In a lot of posts, I feel like I repeat myself. It is difficult not to, since the health issues do not let up and my emotions are always close to the surface. When I do write, whatever is in my heart, pours out through my fingers on to the keyboard. I'm telling it like it is. Also, if I were reading the blog of someone in my position, I would want to be saying to myself "me too...me too!!...they completely understand". Whitewashing isn't for me.
After my last post, I received the most comforting, and VALIDATING comments from Ann, Lynne and Vicki. I've said before that my blog is as much about wanting to be a touchstone for so many in my shoes, hoping to help in some way, or even putting a smile on someones face,...but I have also said that it goes both ways. Ann, Lynne and Vicki's comments confirmed to me that I did to the right thing, as far as posting the downer days too. Thank you so much! This is very much a two way street. I really needed to hear that they "got it".
Vicki is also very sick and we have been in touch a lot lately. We seem to be riding the same roller coaster...in the same seat. These days, it is like we can finish each other's sentences, when we talk about how impossible this is emotionally. Again, not to sound too dramatic, but this is really what seriously, chronic illness is. Vicki was telling me about her horrible Christmas last year. Poor Vicki was very sick, hospitalized and feared she was dying. She said that one night, she looked out the window at the night sky. To Vicki, the black sky represented what her life has become. The stars signified the special moments that are an unexpected, a heart warming spark. Since Vicki was too sick to decorate her place for the holidays, she said her husband went out and bought prelit garland to decorate the inside of her home. For Vicki, that was another shining star, against her black sky. At that moment, as simple as that was, it was just what Vicki needed....and, I get it. Vicki and I both struggle to get through the holidays. It is only July, and I am already dreading them coming.
Vicki texted me again today, continuing from the last few days. It is so comforting to have friends that understand this experience. I texted to her, that when patients are on chemo and get to the point that they cannot take any more, they choose to stop the treatment. We don't have that option. In fact our symptoms are much like the side effects of chemo. Neither of us would ever commit suicide, so I'm not trying to send up red flags. That will never happen. Everyone knows I am always using analogies to get my point across. I believe the patient/chemo story is a perfect analogy. We have no options. I can never imagine getting worse, but somehow it does.
It is strange, I have never been a jealous person. People would ask me, all the years I had the design shop, how I could stand going in to incredibly beautiful homes....not talking about the McMansions. My response was always the same, that I am not jealous at all, just grateful for what we did have. Not to mention, the millions of people in this world that would have given anything to have my "former" life.
Since the last two months have been so hard, with unrelenting symptoms and dealing with the emotions, I notice that I have become quite the "jelly Bean". When I say jealous, I mean watching neighbors going out for power walks. Really, watching anyone and everyone with their lives in tact.
It has been a very tearful couple of weeks. As you know, this has happened before and will happen again. Right now, I am trying to wait it out.
My objective in writing this blog has been to hopefully be of some help to others in my shoes. All I can do is be honest. My intention was never for this to be a place for me to vent or unload. Hoping that somehow comes through in my words.
This is an excerpt of what Vicki wrote in my comments section: I've told Dale before that our new condo feels like a beautiful prison. I spend so much time inside and away from people, and like you, miss out on so many memories with the people I love.
This one is from Lynne ~
Hiya Cathy,
Boy, you couldn't have said it better. For me, it's almost as if I was, not I am. Been trying forever to get past it, but when you can't do anything for more than a couple of minutes, where else does the disheartened mind go? Maybe I will learn to meditate and have out of body flying around experiences...
love and prayers,
L
This one is from Ann ~ we met in Kindergarten...and yes, our memories from LBI will be with me forever..a whole lot of laughing!!
athy,
You are making a difference in peoples lives, still. You are educating some and you are the voice of others. You are showing us the commonality. At some point we will all be where you are and you are teaching us how to handle the dark moments. Your glass has always been half full. You always look at possibilities not obstacles. Life has not trained you for this state of limbo but you are handling it with style and grace. Thank you for all you do.
I too cherish the memories of LBI with you and your dear sweet mom. They were some of the best times of my life.
Ann
I hear from readers of the blog through e-mail for the most part. Once in a blue moon, I'll get messages at the bottom of a post. The last post I had written, concerned me with its heaviness. In the end, I decided to let it be, because it is me being honest.
In a lot of posts, I feel like I repeat myself. It is difficult not to, since the health issues do not let up and my emotions are always close to the surface. When I do write, whatever is in my heart, pours out through my fingers on to the keyboard. I'm telling it like it is. Also, if I were reading the blog of someone in my position, I would want to be saying to myself "me too...me too!!...they completely understand". Whitewashing isn't for me.
After my last post, I received the most comforting, and VALIDATING comments from Ann, Lynne and Vicki. I've said before that my blog is as much about wanting to be a touchstone for so many in my shoes, hoping to help in some way, or even putting a smile on someones face,...but I have also said that it goes both ways. Ann, Lynne and Vicki's comments confirmed to me that I did to the right thing, as far as posting the downer days too. Thank you so much! This is very much a two way street. I really needed to hear that they "got it".
Vicki is also very sick and we have been in touch a lot lately. We seem to be riding the same roller coaster...in the same seat. These days, it is like we can finish each other's sentences, when we talk about how impossible this is emotionally. Again, not to sound too dramatic, but this is really what seriously, chronic illness is. Vicki was telling me about her horrible Christmas last year. Poor Vicki was very sick, hospitalized and feared she was dying. She said that one night, she looked out the window at the night sky. To Vicki, the black sky represented what her life has become. The stars signified the special moments that are an unexpected, a heart warming spark. Since Vicki was too sick to decorate her place for the holidays, she said her husband went out and bought prelit garland to decorate the inside of her home. For Vicki, that was another shining star, against her black sky. At that moment, as simple as that was, it was just what Vicki needed....and, I get it. Vicki and I both struggle to get through the holidays. It is only July, and I am already dreading them coming.
Vicki texted me again today, continuing from the last few days. It is so comforting to have friends that understand this experience. I texted to her, that when patients are on chemo and get to the point that they cannot take any more, they choose to stop the treatment. We don't have that option. In fact our symptoms are much like the side effects of chemo. Neither of us would ever commit suicide, so I'm not trying to send up red flags. That will never happen. Everyone knows I am always using analogies to get my point across. I believe the patient/chemo story is a perfect analogy. We have no options. I can never imagine getting worse, but somehow it does.
It is strange, I have never been a jealous person. People would ask me, all the years I had the design shop, how I could stand going in to incredibly beautiful homes....not talking about the McMansions. My response was always the same, that I am not jealous at all, just grateful for what we did have. Not to mention, the millions of people in this world that would have given anything to have my "former" life.
Since the last two months have been so hard, with unrelenting symptoms and dealing with the emotions, I notice that I have become quite the "jelly Bean". When I say jealous, I mean watching neighbors going out for power walks. Really, watching anyone and everyone with their lives in tact.
It has been a very tearful couple of weeks. As you know, this has happened before and will happen again. Right now, I am trying to wait it out.
My objective in writing this blog has been to hopefully be of some help to others in my shoes. All I can do is be honest. My intention was never for this to be a place for me to vent or unload. Hoping that somehow comes through in my words.
This is an excerpt of what Vicki wrote in my comments section: I've told Dale before that our new condo feels like a beautiful prison. I spend so much time inside and away from people, and like you, miss out on so many memories with the people I love.
Hiya Cathy,
Boy, you couldn't have said it better. For me, it's almost as if I was, not I am. Been trying forever to get past it, but when you can't do anything for more than a couple of minutes, where else does the disheartened mind go? Maybe I will learn to meditate and have out of body flying around experiences...
love and prayers,
L
This one is from Ann ~ we met in Kindergarten...and yes, our memories from LBI will be with me forever..a whole lot of laughing!!
athy,
You are making a difference in peoples lives, still. You are educating some and you are the voice of others. You are showing us the commonality. At some point we will all be where you are and you are teaching us how to handle the dark moments. Your glass has always been half full. You always look at possibilities not obstacles. Life has not trained you for this state of limbo but you are handling it with style and grace. Thank you for all you do.
I too cherish the memories of LBI with you and your dear sweet mom. They were some of the best times of my life.
Ann
Again, these comments made me feel so much better about this blog. My primary goal is not to sing the blues or look for sympathy. My goal is to reach others that are as sick as me, and sicker. We are in a special club, one that you have to be in to truly understand. Unfortunately, I really have been concerned that the posts have been too heavy, and I ask myself "who am I helping, by writing this". I know my eyes would be glued to a book, magazine,etc. if there were an article written by someone like me, so for now, I am staying with it.
It has been approximately two weeks since my last post. With my state of mind being so poor, I would not have come on. I guess I just wanted to write tonight to show the kind support from Vicki, Lynne and Ann. Their messages really lifted me up and is a great help to getting me back on track. Thanks guys...XOXO
Ugh...I have reread this more times that I should have. Each time, I find a new grammatical or spelling errors. Not proof reading again...time to get on my back again. Please excuse my mistakes!
Friday, June 22, 2012
Warning...Debbie Downer signing on...
As you know, I've been going through a rough time the last several months. Tears always close to the surface...par for this course, and it will pass at some point.
I am having a harder time, harder than normal, the last month or so. Because of this, I have even more time to just think. I really have too much time to think as it is, ugh it hurts to go deeper.
Before I continue, this is a post that will be appreciated and understood by my sick friends, more than those that are well.
Anyway, with all this time to think, I have had a new realization/epiphany...I wouldn't have imagined that there were any new ones to come, after seven years.....God, I hate to think that there might be more.
One of the things that has had me more teary eyed, and sad these days, is that in many ways, most aspects of my life ended seven years ago. I think so much about the good 'ol days ~ and there were a lot of them. What saddens me, is that if I hadn't gotten so sick, I would have continued living a great life. Never being saddened by memories of my past. I wouldn't have time for such nonsense. I would be living and constantly, unknowingly creating new memories.
I feel so imprisoned, in so many ways. There are no memories being made. That part of my life is over. It is like the end of a record on a record player, after the last song has been played...a deafening silence. I don't want this to sound morose, but I really feel like my life ended seven years ago, and now I am left to exist.
While I was growing up, my parents had a beach house down Long Beach Island, NJ. To say they were the best summers of my life, would be an understatement. Tonight, my oldest and best friend, Ceal, took a picture of our old house and texted it to me. (Ceal is down LBI for the week) I cannot believe that it brought me to tears. (I love Ceal to pieces and so happy that she sent the picture, so I could send it to everyone else....so, Ceal, you did the right thing :)
Anyway, seeing the house conjured up endless happy memories. It also brought me back to what I have been thinking so much about lately...there are no memories for me to make anymore. Yes, those I love are making memories around me, which is great. I just feel so empty that none are mine. It's a very difficult existence, with so much of me completely gone. I hate it beyond words.
I could be wrong, but I think you would have to be in my position to really get what I am saying.... sounds like jibberish. I know others that feel this same loss.
This has been on my short list of things to post about. After Ceal sent the picture earlier tonight, I thought it was the perfect opportunity to address it. Ceal asked if there was anything else I wanted to see down LBI, and she would take pictures to text. I told her "I want to see everything..with you!"....if only things weren't as they are....
I am having a harder time, harder than normal, the last month or so. Because of this, I have even more time to just think. I really have too much time to think as it is, ugh it hurts to go deeper.
Before I continue, this is a post that will be appreciated and understood by my sick friends, more than those that are well.
Anyway, with all this time to think, I have had a new realization/epiphany...I wouldn't have imagined that there were any new ones to come, after seven years.....God, I hate to think that there might be more.
One of the things that has had me more teary eyed, and sad these days, is that in many ways, most aspects of my life ended seven years ago. I think so much about the good 'ol days ~ and there were a lot of them. What saddens me, is that if I hadn't gotten so sick, I would have continued living a great life. Never being saddened by memories of my past. I wouldn't have time for such nonsense. I would be living and constantly, unknowingly creating new memories.
I feel so imprisoned, in so many ways. There are no memories being made. That part of my life is over. It is like the end of a record on a record player, after the last song has been played...a deafening silence. I don't want this to sound morose, but I really feel like my life ended seven years ago, and now I am left to exist.
While I was growing up, my parents had a beach house down Long Beach Island, NJ. To say they were the best summers of my life, would be an understatement. Tonight, my oldest and best friend, Ceal, took a picture of our old house and texted it to me. (Ceal is down LBI for the week) I cannot believe that it brought me to tears. (I love Ceal to pieces and so happy that she sent the picture, so I could send it to everyone else....so, Ceal, you did the right thing :)
Anyway, seeing the house conjured up endless happy memories. It also brought me back to what I have been thinking so much about lately...there are no memories for me to make anymore. Yes, those I love are making memories around me, which is great. I just feel so empty that none are mine. It's a very difficult existence, with so much of me completely gone. I hate it beyond words.
I could be wrong, but I think you would have to be in my position to really get what I am saying.... sounds like jibberish. I know others that feel this same loss.
This has been on my short list of things to post about. After Ceal sent the picture earlier tonight, I thought it was the perfect opportunity to address it. Ceal asked if there was anything else I wanted to see down LBI, and she would take pictures to text. I told her "I want to see everything..with you!"....if only things weren't as they are....
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