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!
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