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 :)

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

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!

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.... 

Malibu Cathy...

 So excited...I actually have a tan line!  First time in seven years.  It is amazing to actually have some color..I'm giddy!  With my heat intolerance, I cannot be out in the sun.  Staying in the water, kept my body cool.  Unlike the beach, Ryan's pool is right out their back door - so perfect for me.


My parents, Jimmy and I went to Liz and Ryan's for Fathers Day today..Happy Father's day to all the great Dads out there!


It was a beautiful day and I decided to bring my bathing suit. The water temp was perfection. My Mom also came in the water.  When I am in the pool, I feel no pain or discomfort whatsoever.  I miss my old house, because I would love to go in the pool whenever the time feels right.


I have been warned by two doctors not to go in the pool  They told me that I can only stand in the shallow end, and not to move around....I don't follow orders.  When I am in the water, I feel nothing, thus giving me a false sense of security.  Because of that, my body is using more energy than it has to give. I medicated as soon as I walked in the door. No doubt, this is going to make tomorrows MRI a horrible day, from start to finish....as I've said many times before, this was most definitely worth it.


Ryan's house is like a little resort and we all had a great, relaxing day.  I know everyone had a really nice time. A big fat THANK YOU to Ryan and Liz! More importantly, my father had a great time...and, that is what it is all about!!


So, not looking forward to going to Miami tomorrow for the MRV...specific MRI. Once I get the results, I'll be in search of a new neurologist


Typing has become very hard for me these days, and this post is no exception.  
I have to get back to bed and horizontal! Just wanted to brag about my tan line...Ken is a party pooper and came without his speedo...I mean bathing suit!  Good night from Malibu~

So happy to be back..

It has been over a week, since my last confession....


The last few weeks have been very hard .... really hard.  My physical symptoms were about as bad as they can get. Adding insult to injury, I have a hard time emotionally, when I am at that low level.  I am pretty sure I posted a few posts ago about a meltdown brewing.  


Last Sunday and Monday, I thought that I somehow circumvented that aspect of my crummy condition.  It appeared to be great news, and I felt like I dodged the crybaby bullet (they're made of onions).  As I predicted in that post, I did have my full blown meltdown with poor Jimmy.  Who knows why, but it wasn't enough. My symptoms are scary and when they escalate or when new ones start up, it is especially scary.....


My hand/eye coordination is getting worse and I am dropping things more often than before. The funny thing is, that I have seen big changes when I play Words With Friends. I have to say, I am a little concerned about it. It can take five or six attempts to actually get the word in place and hit send. I now pull up the letters I wasn't planning on using, put them at random places on the board, accidentally hit "pass" and other things.  It has really gotten to be a chore.  HOWEVAH....I still love playing it and wonder what I did before four months ago, when I started playing.  For those that read this blog and play WWF with me..I still want to play!!!  Anyway, I'm keeping track of my sudden difficulty in getting the words situated and sent.


With being so sick over the past few weeks, I wasn't able to attend my SWEET little angel face, Brayden's fifth birthday party!!! Brayden is our oldest grandchild. I remember so clearly the day he was born.  My sweet little guy.  It was a small family birthday party on Tuesday night. I had been beyond sick for days, and knew I wouldn't be able to make it.  Before Jimmy came home from work, I thought I would try a mind over matter thing...no luck. Chris sent me pictures of the party. I loved seeing what I had missed. Missing a day that is so special, destroys me.  UGH!  So hard....


Starting yesterday, I feel like I'm starting to improve...working my way back to my normal. I can say that I am officially off of the meltdown radar.  That alone is smarvelous and swonderful.  It is also great to feel well enough, both physically and emotionally to get back on the blog. It is a treat when I am up to it, and rarin' to go...fun!


I am still concerned with my newer issues.  As I had mentioned before, I am in the market for a new neurologist. I have my eye on a woman neurologist at the Cleveland Clinic/Weston.  Monday, I go to Miami for an MRI that looks closely at the blood vessels in my brain.  Once I go over the results with Dr. Mental Illness, I expect that to be the end of the road with him.  I'm considering writing a letter to the head of his department.  With the hundreds of doctor appointments I have had over the past seven years, I never had an experience like that.....to the moon Dr. Alice..


I do want to apologize for not keeping in touch with anyone.  It really isn't a choice when I am so sick. I feel like I lose a little bit more of myself every day that passes, without catching up. 


My beautiful niece Keli and I spoke a week or two ago.  We have been planning times to talk since before Christmas!!!  We have made tentative dates in the past, that I just couldn't keep.  I just checked on my calendar, I wrote in "Call Keli" on May 30th.  I have canceled so many times, that I called even though I shouldn't have.  We were only on the phone for around forty five minutes.  It was so much fun catching up with my sweet niece.  Unfortunately, forcing myself to call when I shouldn't have, caused me to be horribly sick, well in to the next day. On the flip side, I wouldn't take a minute of it back. Chances are, that if I called when it was a good time for me, it wouldn't have been for Kel. We had so much to catch up on, and we still have a few more chapters to go in upcoming calls. It was so much fun...really fun!!! (Keli is a college professor doing research that aligns itself with my issues and writing a blog..I love talking to her about all of this. It makes me feel alive and like I have a purpose...very powerful)


One last thing, I know most of you are too young :( to remember...but, I'm here to tell you that I am super excited that "Dallas" is on.  So much fun watching again!!!  When I hear the theme song, my heart races!!....I know, I don't have a life..


Now that I am feeling a little better, I am hoping my next confession is coming soon!...I need to venture out, so I can wrangle (as they would say on "Dallas") up some stories....

This whino has a bad memory...

Sorry, but I'm back with more.  I realized today that I left out something from my (as Trump would describe it) TERRIFIC appt in Miami.


He told me that with the evidence he has, of whatever my autoimmune issue is, there are treatments that could make me feel better....nice...it's taken him over two years to tell me this.  


Unfortunately, I don't expect to opt for any of the treatment options, in my case.  One treatment is the exact, high dose steroids, taken four days per month, that my mother was on in December.  She was so horribly sick from the side effects,we thought we were losing her.  In addition, it dramatically effected her blood pressure. With my aneurysm, this is not an option.


He also said, they he can treat me with chemo.  I don't have the details, but he said that there are serious side effects that come with it....but I should feel better.  I cannot imagine doing that either.


Embarrassing as this is to say, I'm pretty sure there was a third option.  Although, it doesn't matter much, because he said for all three, the side effects are heavy.  I think it was some type of infusions...on a regular basis.


Don't ask me how, but with all the emotions from the appointment, I didn't take the time to ask him to go over each treatment in detail.  I would like all the information.  He pretty much made the decision for me.  In his weak defense, I would probably agree.  Regardless, I would have appreciated hearing the details. I do plan to address this with him again, during my next visit.  


In the meantime, I would love to know of an amazing, wonderful, compassionate, brilliant...funny, wouldn't hurt...neurologist.  I know it sounds insane..oops, I better watch my words, but the process is exhausting for me.   IF ONLY, I could shop for a doctor on Match.com...Hey, I may be on to something....  Anyway, Florida always has had the WORST reputation for doctors, and I'm here to give that a big AMEN!!!  UGH...between our insurance and my condition, leaving the state is not the easiest option.  I know, from experience, that I could go to some of the country's best teaching hospitals, and still have the same experience, leaving me to make a u-turn and a very depressing and sick trip home.  


It is going on 3:00 PM...note, not AM!!  Again, a very bad day, and going directly back to bed.  I know this is a neither her nor there post.  It belonged on my last one. Tying up loose ends!....as you were...

A message from your neighborhood whino...

Ugh...where to begin?? I hope I can keep this post to a reasonable length...not making any promises..

I've been holding off writing until my neurologist appointment yesterday.  As you have probably surmised, I'm not the best at keeping a short story short.  Apologizing in advance...

Let me start by saying I have been to countless neurologists over the past seven years.  Several at the Mayo Clinic/Jacksonville, University of Florida in Gainesville, Cleveland Clinic/Weston, the University of Miami and several local.  I've often wanted to go back to my old and very comfortable stomping grounds at the University of Pennsylvania, but not in the best shape for the trip.

You all know my problems started with a bang seven years ago.  I went from a very vibrant, alive and super active and exciting life to that of an extremely ill person, completely out of commission and without purpose.  When this all hit, I had no idea that this is how I would be spending the rest of my life.  I haven't always been as sick as I am now. It has been a slow and steady decline.  In addition,  I have acquired POTS, which is extremely debilitating. From seeing my immunologist, I am aware that my immune system is all but destroyed, effecting every cell in my body and brain. I won't bore you with all those details, but it contributes to my total picture.  

All the while, I have yet to get a proper diagnosis for my debilitating neurological problems that started this all off when I was forty eight. I was dealing with those symptoms for the first several years I was sick...and I was very sick.

I have been tested for more things that I could ever list.   Also, I know it is impossible to test for every single disorder, syndrome or disease that coincides with my neurological symptoms.  I get that.  In the meantime, it is maddening not having the base diagnosis, which the other things seem to be stemming off of.  (All except the high csf pressure around my brain and, of course, the aneurysm)

Over the years, I have read a few books written by women who are chronically ill and have seen countless episodes of Mystery Diagnosis.  I so completely relate to the patients on that show.  Because of these things, I am well aware that it can take years to get answers. Frustrating??? You have no idea. I want answers and I want treatment...

As you can see, I have taken you over the river and through the woods to get to my neurologist appointment from yesterday.

I have been seeing this particular neurologist for approximately 2 1/2 years. Since the first appointment, I haven't quite been able to decide if he is good enough, bright enough, interested enough, caring enough.

Yesterday, I spent the entire appointment crying my eyes out, giving him a piece of my mind, while pointing at him with every issue I had with him.  I was outraged!!!!

Since I  began seeing him, he has been fixated on my cysts up and down my spine and the CSF pressure issue. Great...don't miss a step with this..yes, very important stuff.  BUT, what about all the other things going on.  His response has always been, let's deal with this first, then we'll get in to that.  It's been over two years and he still doesn't want to "go there"!?!?  

I have been so, so sick in the past several months, that I was really looking forward to this appointment.  We have to get moving on answers....period.

When I brought up how sick I've been, the water works started.....when you are  woman, in a doctors office, and the tears come, you immediately lose credibility..FYI for those that haven't been in this situation....  For some lucky reason, over all these years, I think I only broke down once with a really great woman doctor at the Mayo Clinic. 

I told him that we need to find answers to the original neurological symptoms from way back.  He looked at me like I was telling him a joke. With a smirk, he said..."Okay, what's your symptoms?"  So, I started with the laundry list.  His response was "You've told me this thousands of times"!!!!! Then, just waved me off!  I told him that I cannot believe that he doesn't take this serious, or consider working on that end of my problems. He said, all I can say, is that you have a major autoimmune issue that isn't identified. Hey pal, let's let's identify it!!! 

I reminded him that he sent me to see a doctor that only addresses chronic fatigue syndrome.  After seeing her, I told him that she said that I have chronic fatigue, in fact she had it in her file before speaking with me.  He said, at the time, "You don't have chronic fatigue", very sarcastically, like he couldn't believe they would suggest such a thing. He sent me there...why??? Of course, he couldn't answer.  Then he looked at me and...I can't believe I am writing this in the  blog....but he looked at me and said, very calmly... "you are mentally ill"!!!!!!! ...all because I was crying, due to my frustration after seven very long and painful years, and my astonishment that he was in no rush to help. It is not uncommon for doctors to recommend patients like me, to see a psychologist when the doctors cannot find a reason for their patients issues....suggesting it is all in their heads.  I think this happens on almost every episode of Mystery Diagnosis. No doctor has ever suggested that to me, since I have such compelling evidence.  I could not believe he would say such a thing, merely because I was so upset about my condition and lack of progress.  Mind you, I couldn't help but cry when we first started talking, because it has been so rough lately. My side of the conversation didn't get heated, until I was responding to some of his shocking statements and total lack of interest.

He said, in a patronizing way..."Why would you want a diagnosis?" WHAT???? I said "you wouldn't???"  He said he would not want a diagnosis, and not want to hear that he is chronically ill and will only get worse....no, he wouldn't want to hear it.  He point blank said he would rather not know.  I told him, very heatedly, while sobbing, that if he had lost the last seven years of his life, spent most of it staring at the ceiling, unable to function or practice medicine, that he would be sitting where I was, crying just as I was and begging for help in finding an answer. I told him several times that I wished he could live with me for a week, to see what my life has been reduced to. He back peddled on the mental illness thing, saying, it is common in patients with chronic illness to get upset, then the anxiety over the illness makes their symptoms worse. Sorry buddy....the train had left the station.   In the end, he walked me to the reception desk and ...get this...he said "if you knew what was happening in my life, you would never have talked to me like that".....WHAAAAAAT???? If he is having personal problems, maybe he should be taking a leave of absence.  

Aside from that, my Barrett's biopsy came back normal...expected, but always good to hear.  The Cushings test came back normal, which, to me, is not good news.  I need the core cause of all my other diagnosed issues. They are coming from somewhere, but no one can figure it out.  I am sticking with Dr. Mental Illness only because of the high csf pressure, which he is very interested in. (although, I may end up back at the Cleveland Clinic, just to have a "go to" neurologist...I'm only with Dr. Sigmond Freud to continue with the csf issue) He looked in my eyes with the light and could tell by the way my blood vessels were pulsating that the pressure is still too high, although it was enough to effect my vision....which it has, very much.  He said he could tell that it was not at the danger level though.  In the meantime, he put me on a medication that may help alleviate some of the pressure, and I will see him in three months to check it out. Also, he ordered an MRV , which is an MRI which focuses on the blood vessels in my brain.  If any are blocked, that could explain the high pressure.

Yesterday was horrid to put it mildly.  I was crazy sick last night and today was not good.  It is how my body reacts to appointments in general, but yesterday was over the top.  I really wanted to post last night while it was fresh in my mind, but it was not an option.  Now, I can't remember half of my conversation with him.  Just as well, this post is painfully long as it is.

This post is nothing more than purging my frustration from yesterday....sorry. Hopefully, I'll get to writing some more fun posts soon....I cannot wait!!

Boo Hoo Sue....

I would prefer the title of this post be woo hoo Sue...but, it's not.  Ugh...such a rough time it has been.  


There are two different types of "scared" for me these days.  


One is the way my body feels when all the worst symptoms converge at the same time.  It is such an eerie, freaky and scary feeling.  What goes on in my body at these times is pretty much impossible to put in to words.  I have these spells several times per week...it scares me every time..I'll never get use to it.


The other, much less frequent "scared" is a different story.  Maybe twice a year, I'll step back and take a good, hard look at all that is going on with me physically. It scares me to no end.  I've been so worried and fretting for the past few days.  Too much is happening.  I was talking to my friend the other day and she wanted to know what exactly is going on.  It is such a long and winding road trying to explain my different conditions and symptoms.  When I was going down the laundry list, it started freaking me out, almost like I was hearing it all for the first time.  My stomach has been tied up in knots.


I was supposed to get the Barrett's biopsy results last Wednesday. After several phone calls, it looks like I will get the results Monday. I really need to cross that off of my worry list.  This week, I should also get the results for the Cushings test.  


On Tuesday, I have an appointment with my neurologist in Miami.  Unfortunately, I'll have to go myself and that makes me nervous these days.  **anyone that knows my mom, don't tell her about this**  Anyway, we are going to discuss how to proceed with the issue of the elevated csf pressure around my brain.  While I am with him, we have other issues I need to sort out and discuss.  I have my list ready to go.


When it was getting close to dinner time tonight, I felt STRONGLY that I had to bust this joint!!  I wish I could literally knock down the walls.  Having been so sick, and still very sick today, I knew it was not a day to leave the house.  Regardless, I had the choice of staying safely in bed, or getting myself together and take a leap of faith.  We decided to go to Big Bear...such a great place...and close to home.  


Like every time I leave, just getting myself "did" is enough to put me immediately back in bed. If I say so myself, it was a better "did" than normal..can I hear a woo hoo????


When the waitress came to take our drink orders, I really wanted a drink-drink.  Initially, I ordered a drink-drink and water with lemon.  In a matter of minutes, I was diving really bad.  Luckily Jimmy got a hold of the waitress and she cancelled the drink-drink order :(...If anyone could use a drink-drink, it's, me-me.  I was going down so fast.  I had entire body tremors, my brain was tanking and I felt like I was melting from the inside out.  I was thinking we had to leave, then everything turned around in a matter of maybe ten minutes.  That has never happened before.  When it hits, I have to leave immediately.  I was so shocked that I improved enough to stay.


Just as I suspected, when we were leaving Big Bear, I couldn't wait to get home and in bed.  I'm so happy we went and surprised that I was able to ride it out to the end.  As usual, my desperation to leave the house is replaced with desperation to get back to it, within an  hour.


My anxiety is getting the best of me these days.  I purposely didn't bring this up at dinner, because I knew I would end up in a pile of tears. I haven't brought up my fears to Jimmy yet.  The way this usually plays out, is that I hold it in as long as possible...doing my best to avoid a meltdown.  The day will come, probably this week, when I'll have to let it all out to Jimmy and cry...and cry...then get over it.  Hopefully, this second version of my "scared" won't rear its ugly head for another six months.  


I'm still playing Words With Friends.  I really hate using the expression "passing the time" these days.  If I were a well person, I would play to pass the time before or between doing things.  For me, this is the thing....but, it does pass the time.  I am playing with my daughter-in-law, Laura, which is always fun.  Also, I am playing with an old friend from grade/high school, PJ.  He is so funny.  I cannot believe how addicted he is.  So many times, I say to myself "this is the last play, then I'm telling him I HAVE to stop"....but, the alerts keep coming like planes lined up on a runway.  I give it all I got for as long as I can possibly hold out.  Anyway, PJ cracks me up!  I'm also playing a woman that was randomly picked, through Words With Friends.  I have to say, she is my toughest competition....which is really fun....and, it passes the time.


Before writing this post, I was in bed, tossing, turning and crying....and tossing, turning, worrying.  I thought that I would come on and unload.  Surprisingly, I'm feeling a little better....didn't expect that...Woo Hoo!

Back too soon...

After posting for seven consecutive days, I expected to take some time away.  Because of my symptoms and how I feel emotionally, I never write as often as I would like.  Well, you know me...if I feel like talking...

With today being Memorial Day,  Jimmy decided that he REALLY wanted to have a cookout.  It's funny because in over thirty years of marriage, I don't ever remember him saying "let's do this". Like most wives/moms, I would have  already had the wheels in motion.  When he brought this up, the other day, I have to say that I wasn't on the same page.  I asked him several times over the last few days if he was sure, and he really was.  I was afraid, with how my symptoms are these days, but didn't want to take that away from him.

Today was simple Simon, my parents, Ryan and Liz.  We had the normal cookout food and there was minimal prep involved.  

I have been more sick the last six months or so.  Recently, I wrote a post about going to visit Brayden, Gabby and Maks.  In it I wrote how difficult the entire process is, from getting myself together to ending up back in bed, very sick.  I also wrote that when I am at my new level of "best", I have to go, regardless.  If not, I wouldn't get to spend time with the kisses...I mean kids. 

I was, as DeNiro would say "a little bit" nervous..yeah, a little bit.  I love, love, love seeing everyone, but know that these days are more of a struggle, then prior to these past six months.

I know Ry and Liz are reading this...Hi guys!! As usual, no matter the price, I am so happy they all came. If I had to do over, I would do it in a heartbeat. I don't want Ryan and Liz to think I am complaining that we had them over.  It was the right decision and really enjoyed catching up with them...always fun.

Like always, it was really hard on me today, really hard.  With my crazy sleeping, I set my alarm for 2:00 pm.  I needed so much more sleep, but had to start to get myself together (such a joke) and some prepping of the food too.  Knowing that they were coming today, I made sure I took a shower yesterday.  This is my plan if I am leaving the house or if my family is coming over.  Shower the day before, flat iron this mop the day of. Both in the same day would be too hard on my arms and overall stamina.  It was such a rough start today, I seriously considered leaving my nightgown on.  Lucky for them, I did change in to clothes.  The flat iron - wasn't happening. I picked it up and with my symptoms going down so fast, I knew to walk away.  UGH, I thought I would just flat iron the front, then pull it back.  I looked absolutely horrible.  My original plan was to go all Bobbi Brown/Trish McEvoy/Maybelline "Great Lash" on my face, but just one look in the mirror and I knew not to bother.  I hate looking like I do...unrecognizable.  Between my colorless face, tremendous weight gain and my hair completely untamed...yuck!  I don't know how Jimmy can stand to come home from work every night, seeing the total mess that I am ... flat in bed, like when he left for work.  Lucky for me, he has taken "in sickness and health" seriously.  I feel like he is the unlucky one in this marriage.  He definitely got the short end of the stick.  OH, I can hear all the "poor Jimmy's" out there...at this point, I have to agree.

When everyone left, It was my typical, "oh my God, oh my God" trying to get on my back as soon as possible.  I cannot possibly convey how upsetting it is, when my symptoms skyrocket with the least bit of energy exerted....especially when it is family related. Once in bed, I had to cave and take pain medication. The worst part of this, is that I am pushed over the edge every time I see the kids.  It used to be, that I would have occasional days where it was much more bearable.  I would invite everyone over, without hesitation.  Some days were hard, but at least it was a gamble.  These days, it is more of a sure bet...and that is so disheartening.

I guess I'm still in the Ricky Ricardo 'splainin/complainin' mode from this past week. 

I feel bad writing another woe is me post.  It wasn't my intention when I sat here at the computer.  There were several things I wanted to write about. I feel like this is garbled and pointless.  Over the past week, I had several things I wanted to talk about, but was waiting for the seven day diary to end.  It ended, and I am still singing the blues.  

Several times over the past year, I have said that I don't want this blog to be an outlet for complaining.  It needs to be balanced between being as honest as possible about my conditions, for the very sick readers, yet still remind everyone that we all have have so many reasons to be grateful, sick or not.  I've asked Ryan if this blog appears to be one long pity party.  He said absolutely not....and he promised to tell me if people start talking about me behind my back :)  Hopefully, he will remove the computer from our house if needed!

I have to talk about my extraordinary family, but that is going to take up an entire post.  There is so much to say about my friends and family, and on the flip side, all the chronically ill that have no support from their families. I would die without it. As much as I am looking forward to writing about it, I am not sure if I can articulate the point I want to make.  With luck, it will be one of those posts that comes flying through my fingertips to the keyboard.

It is after midnight now, but I have to say a rip roarin' Happy Seventh Anniversary to Chris and Danielle!!  Hoping you had a great time at Disneyworld this weekend.  Endless hugs and kisses to you both!!!

Mini Jounal ~ Day 5

You are going to think I have a multiple personality disorder, but today wasn't too shabby.  After yesterday, I expected to take a few days to recover from yesterday.  Being so sick and having to push forward was excruciating, when I didn't have the strength to leave the house.  It's over now...thank God!  


After coming home from the Cleveland Clinic yesterday, I fell asleep around 7:00ish, I think.  During the night and today, I woke up two times for around an hour each time, then went back to sleep.  I just did the math, and I slept for approximately nineteen hours...that beat my former fifteen hour record.  Believe me, I needed every minute.


Obviously, that didn't leave too much of the day for anything major to happen.  After all of the tremendous sleep, I went to the food store for a few things.  Something I would have never expected, after yesterday.  Once home, I had to get in to my PJ's asap, which I did.  


My parents stopped over.  At first, I was so disappointed.  I was just about to get back in to bed.  Instead, I put on a happy face...although there was around a three minute delay.... They always make their visits short, which is perfect. My parents thoroughly know and understand my limits. I really enjoyed seeing them....never forgetting how fortunate I am to have such healthy and vibrant 82 year old parents!!  It's like winning the parents lottery! 


Not to brag, but I made dinner too.  Easy peasy....steak, baked potatoes and salad.  Every week there are days when that would be impossible.  I didn't see this little gift coming!


By my new standards, today was great.  I only wish I could get an e-mail or text telling me..."Hey, watch out because tomorrow is going to be a good one...make some plans".  These days come once in a blue moon.  Since I am so accustomed to the "other shoe dropping", it doesn't hit me until the end of the day that I could have maybe done something.  Oh well, at least I had a good day and still feel pretty good.  If I had made a run for it, I would be singing the blues.  


Right now it is a little after midnight and I have a feeling I am actually going to sleep tonight.  Feel free to have the visual of Sleeping Beauty....I hope Jimmy doesn't see that..his opinion would be more toward Rip Van Winkleish :)

Mini Journal ~ Day 4

I'm really not up to writing, but want to continue with my seven day journal.  It is because of days like this, that I do not write on a more regular basis.  Today was hell.

With my health issues, I know when I can get myself together and leave the house.  When these times come, they are very short lived ~  maybe an hour or two.  Also, these escapes are on my terms.  I have to feel the best I can ever expect, before I make the bold decision to do something wild and crazy like ride the scooter around the food store.  If I'm really gutsy, my car makes a beeline for my grandchildren.  I'd say that happens approximately once per month, maybe twice.  When I get home, I am so much sicker than I would have been if I hadn't left.  If I feel like I can steal an hour or two, I do it knowing there will be a hefty price to pay.  Regardless of how sick I get, it is always worth it....especially when I get to see the kiddies. 

So, knowing this, I usually start to panic when I have something scheduled, like MRI's, spinal taps, dr. appointments in Miami or local for that matter, or like today, the endoscopy lab at the Cleveland Clinic.  They are not saying, "Hey Cathy, when you have a decent day, stop in for an MRI"....if only.  I dread these days because I have to be someplace on command at an exact time.  This is so hard for me, since most days I not only have to stay in the house, but perfectly horizontal in my bed.

Today was one of those horrid examples. Warning, here is a little ADD tangent. Around thirteen years ago, I had a surgery where they created a valve where there was not one, at the base of my esophagus.  It is because I didn't have this, that I now have Barrett's esophagus.  Barrett's is pre-cancerous tissue at the base of my esophagus, caused by twenty-four years of stomach acid splashing back up in that area.  With Barrett's, I need a biopsy every other year.  The lucky thing, is that Barrett's in woman almost never develops in to cancer.  Regardless, it is obviously smart to keep an eye on it. After having that procedure I can no longer vomit.  OY ~ I've mentioned before how complicated my issues are and how each thing seems to complicate the other......sooo, here comes another tangent that will come full circle in a minute....with my POTS, I have a condition called gastroparesis.  With this, my stomach does not always get the nerve impulse to digest my food.  It is a horrible, sickening feeling.  When I have this, which is several times per week, my food stays in my stomach and rots. Once it turns to liquid, it passes in to my intestines.  In the meantime, I am extremely nauseous....rolling in the bed, moaning nauseous.  .....working my way back to the esophagus valve surgery....if only I could vomit at these times, it would be such a huge relief.  This condition also causes intense full abdominal pain that wraps around from front to back.  

Okay, as usual, I am making a short story very long.  Just want to let you know how my day started out.  My prep for today included drinking one gallon of Gatorade in one hour.  I did, then was so unbelievably nauseous.  So intense!  Again, I was rolling in bed, groaning as it got worse and worse.  Eventually, I started to have dry heaves.  I went in to the bathroom thinking that I was going to finally be able to vomit.  No such luck.   

That's how my day started and pretty much stayed.  I was feeling horrible.  A day that I needed to stay flat on my back for sure.  I am so incredibly  miserable going to appointments/tests on days like these.  You have no idea how hard it is.  When we got to the waiting room in the Cleveland Clinic, it was pretty packed.  It wasn't more than fifteen minutes before I could feel myself very quickly fall apart inside.  This feeling is something that I don't think I can adequately describe.  I was on fire and my face was sweating.  Inside, to my core, felt like I was dying.  At this point, I knew I could no longer sit in the waiting room.  I asked the nurse if there was an extra gurney in the back that I could lay on until they are ready for  me. My voice was shaky and I was about to cry. At this point, I couldn't stand straight and was leaned over her desk.  Of course, she said they didn't have a thing......she gave me a blanket and told me to use one of the pews in the chapel.  I went in, expecting it to be peaceful and dimly lit.  I almost died when I walked in, it was packed and the "high beams" were on :(

I was so sick, I didn't care what other people thought, I stole a pew and down I went....until my "Outback" buzzer went off.

Walking to the nurses desk was awful.  I couldn't walk straight or pick up my feet...shuffling like a crazy drunk....if only~  They brought me back, it took me forever and couldn't keep up with the nurse.  Thank God, they put me in bed and the got the IV in on the first "shot"....phew!  The nurse had to go over my history.  Having lost the blood in my brain, from sitting in the waiting room, it was so difficult to talk.  I was slurring my words and saying words that didn't belong in the sentence.  I can't tell you how frustrating that is.  My brain was not available and it is so hard to talk and make sense without it. HATE IT...

In the end (no pun intended) the colonoscopy went fine.  For the first time in thirteen years, the Barrett's tissue had changes.  They biopsied four areas.  Initially this freaked me out, but the doctor told me he didn't expect it to be anything serious.  I'll get the results next week.  To be honest, I'm not at all concerned. From the way my doctor acted, it is fine.

When we came home, I was in entire body pain.  I know I mentioned before that pain is my favorite symptom.  With pain, I can take Vicodin and it always helps.  Unfortunately, there is no medication available for my more debilitating, scary symptoms.  I slept for a few hours...woke up....remembered my new schtick...the daily journal...whose idea was that???

Tomorrow, I need to start that 24 hour urine collection.  Ugh...just dreading dropping it off on Friday...ready or not.

Again, this is a very typical example of my experiences at the doctors/tests.  I dread them from the minute they are scheduled.

It is going on midnight and I know I am going to sleep/escape. 

Mini Journal ~ Day Three

Not much to report today.  It was another sleepless night.  I slept on and off until 5:00 pm.  It was one of those days when I knew better than to test my boundaries.  Looking for my "prescription" yesterday was very difficult.  Feeling the way I did today, I stayed in bed until now.  

Like yesterday, I had pretty much the same symptoms.  The difference being that I didn't have to look for my "prescription" or go for the gold and cook dinner, shower, change the sheets  Since I was in bed the entire day, my POTS issue never got to the extreme point. This in turn, helps keep my bp in check, which is what we want for the aneurysm and aortic valve. With all that I did yesterday, I knew I wouldn't have the stamina to exert energy today. Maybe next week, I'll get another "better" day.

Tomorrow, I have my Barrett's biopsy.  Still dreading them routing for a vein, since I will be so dehydrated from fasting for the test.  UGH!  HOWEVER, I do plan on bending the rules.  I'm supposed to stop drinking water at 10:00, but I am going to push it until noon. The instruction page said to stop drinking at 10:00 if the procedure is after noon.....well, mine is scheduled for 2:00, so I gave myself another two hours.  It would be just my luck that they have a cancellation!  Maybe, I'll give this more thought!

Phil and Laura sent me the most delicious chocolate covered strawberries for Mother's Day.  They arrived the Thursday prior.  This test was initially scheduled for the following day, Friday.  Once I opened the box, I could smell these delicious treats.  I thought..."aaww, they'll never know...".  In the end, I decided to call my GI doctor and fess up.  Thanks to my total lack of will power, we had to reschedule for tomorrow.  I am such a weakling!!!  

This is probably a TMI moment, but just trying to stay true to the full disclosure mini journal week.  My endocrinologist strongly suspects that I have Cushings Disease. He said that I am a text book case, although I suspect that it will come back negative again.  The doctor at the Mayo Clinic/Jacksonville also thought it all added up.  The Mayo Clinic and this endocrinologist both tested me for this over the last few years.  It is one of those tests that often come back with false negatives.  The test for this is a 24 hour urine collection.  The directions are very specific as far as the start and end times.  I thought I was done this morning, but second guessed the actual time I started yesterday.  This is what happens when I can't think straight.  It was all too foggy to me this morning.  I'm going to give it another "go" in a few days.  Next time I'll have to write down the start time and set my alarm for the finish time.  Once I am done, I am supposed to get it to the lab within a few hours.  That might not be so easy. 

I have to get up at 5:00 am to begin the prep. (also having a colonoscopy... ....TMI..TMI..TMI)  Hoping to sleep tonight.

I can't think of any highlights from today.  It was very typical of my every day.  I spoke with the kids on the phone and that's always a treat.

I am really exhausted and feeling like I might get to sleep soon.  

These daily journal entries aren't very exciting, are they???  For those that wanted to know, these posts should answer a lot of questions.

Good Night...

Mini Journal..Day Two..

After writing my post yesterday, I was wringing my hands worrying that I was a little heavy on the woe is me.  In writing this blog, I try to convey what my life is, without singing the blues.  It really isn't easy.  


Anyway, the more I thought about it, I decided to leave the post from yesterday be.  Misery really does love company. Not to say, that we want others to go through what we are going through. Speaking for myself, I wouldn't wish this on my worst enemy. Still, I know the chronically ill readers need to hear what someone else, just like them, is thinking and feeling.  As for me, reading about others that are going through exactly the same things as me is validating.  Living a chronically ill life is incredibly lonely, so we need the validation to know we aren't crazy. It is life saving. To make this easier to understand, it would be like seeing a UFO and the difference between seeing it yourself or being with a group that can testify they saw it too.  I cannot believe the life am living and all that I have lost.  It simply does not compute, even after seven years.  Reading about others in my exact position helps me tremendously.  


Andrea Bocelli is singing "Time To Say Goodbye" on my playlist....hhhmm, I did  get a little heavier in the last paragraph, with such an emotional song in the background.  Oh, here comes Viva La Vida....my special song/memory with my sweet grandson, Brayden....hey, how's that for my ADD at work???


I have decided to chronicle my condition for a few consecutive days. Up until now, this hasn't been my approach with my blog.  I'm hoping that it comes through as sharing my life, with its daily struggles, rather than "hey, look how sick I am".  Just a snippet of a couple of days.


I have a feeling this blog is going to get real boring...real fast!!


I didn't get to sleep last night until sometime this morning, and slept on and off until Jimmy came home from work at 6:00.  Not a good day. Each time I got out of bed, it was like all the blood has drained out of my body and I had to fall back in to bed. The overall intense weakness was pretty bad, along with numb arms and face.  I would have to say that the worst offender was the horrible feeling like I have been heavily drugged. When I have that symptom, which is almost every single day, it is like my brain as a muscle just cannot perform...period.  My brain is totally drained and exhausted. These days are hard to describe...I wish I could.  As a well person, I never experienced my brain not working...having the mental strength for absolutely nothing.  


Today, like most days, I dropped every single thing I picked up.  I have been told not to bend over, but I have to pick up what I've dropped.  It is especially fun when I drop the item again, on the way back up from picking it up the first time, then again, and again....it is always a curse fest! (the curses are bumped up a notch each time I have to re-bend over...so happy we don't have a parrot!!) Yesterday, I bumped something in the kitchen cabinet and it knocked over a container with toothpicks.  I had no choice, but to leave them on the floor.  This happened while I was already overextending myself cooking dinner.  It is horrible when I drop a something made of glass.  With the tile floors, the glass goes flying all over.  This always seems to happen when I am home alone.  Because of our precious pooch, I have to clean it up....curses, curses, curses!


A few hours ago, I misplaced a prescription....okay, I'm lying....it was my mouth guard :D...I hate to add to the visual you all must have of me as it is!!!  It had to be within five feet of my nightstand.  UGH!!!  Jimmy was helping me tear the bed apart, looking under, behind, etc.  I was determined to find it, but being such a rough day to begin with, all the bending over and lifting was sending me straight downhill. This would all be due to the POTS.  I was panic stricken, not because I couldn't find the prescription (forgot I lied..mouthguard), but because I was upright and my symptoms were going through the roof. After maybe five minutes of searching, we found it.  My body was destroyed, it was horrible.  Today is an example of having zero tolerance for any activity whatsoever. My days are more likely to be like today.  


A lot of times, friends and family ask how I am and what specifically is so difficult that particular day. This is always such a hard question to answer.  I am so overall physically and cognitively sick, I just cannot put it in to words.


I did attempt to play Words With Friends ...(big mistake :) ... It  was not a day for phone calls, cooking, washing sheets or taking a shower...just looking forward to sleeping and escaping...


Earlier in this post, I mentioned how lonely life is being chronically ill. I want to clarify that I have nothing but a tremendous amount of love and support coming from every imaginable direction.  I could not possibly be more blessed in that department.  There is so much I have to say about this subject.  Once I am done this little daily diary, I plan on writing about that. 


Well, the  Beach Boys are now singing "God Only Knows"..what I'd be without you...and YOU all know who you are....  

A little insight in to my normal day to day..

For once, I have several things that I would love to write about.  Unfortunately, after typing only one sentence, I can see this is going to be a difficult job tonight. My hands aren't cooperating. I'll try my best to stick it out.

Each topic would be lengthy, so I am trying to decide which way to go.  Hhhmm, I think I'll get a little more descriptive with my conditions.  In the past, I have shied away from giving out the full ball of wax.  It is just too complicated, with overlapping issues, and issues that complicate others.  

I became ill approximately seven years ago.  It began with bi-lateral Trigeminal Neuralgia. Such a nightmare...just horrible. I had a six month long attack, which is unusually long.  I have been in remission for several years, with flickers of it coming through every now and then.   This evolved in to MS like symptoms.  Many of my neurologists, and two MS specialists, over the years were sure that I had MS as well. It often coexists with TN. It can take as long as twenty years to get a firm diagnosis of MS.  Honestly, I wouldn't be surprised if I had it and wouldn't be surprised if I did not.  In the scheme of things, it really doesn't matter at this point. Too many other things have come in to play. 

I have other autoimmune issues, but will save that for another time.

So, back to POTS.  This began approximately 2 1/2 years ago.  Of all of my problems, this is by far the most debilitating. Two years ago, we went to Vanderbilt's Autonomic Dysfunction Center, and they diagnosed this with one hand tied behind their backs.  I'll give you an example of how today went.

My sleeping is affected by this and affected it is.  Part of the time, I go to sleep around 2:00 am and sleep for ten to twelve hours, which isn't enough.  It is not possible to get enough, and actually wake up rested.  Other cycles, like what I am going through now, I am up all night, and go to sleep approximately around 9:00 am and only sleep for a few hours. It is not uncommon for me to go two consecutive nights without sleeping, although my body is exhausted.  My sleep disorder/neurologist told me that the way my nervous system is wired, any sleep medications bypass where they are supposed to go and are worthless.   

Once I wake up, I almost always feel very sick.  Extremely weak, aching muscles ~ all muscles, horrible nausea (which is caused by a POTS symptom, gastroparesis) and a total shut down of my brain.  This extreme symptom attack usually lasts approximately an hour or two.  At that point, I am more comfortable to get out of bed and evaluate my condition for the day.  Honestly, my best days, are those where I literally stay flat on my back all day.  The worst is when I do spend my day on my back, but still have heightened symptoms - to the point of being scary....they are the worst days.

My internal body temperature cannot regulate the extreme heat that emanates from my body, as well as my reaction to heat.  My glasses continually fog, due to the humidity given off of my head - yuck!!! In fact, I just came back from filling my ice water glass.  My body is on fire and my glasses are fogged.  This is from sitting at the computer and the exertion and adrenaline involved in posting. 

Hand in hand with the extreme heat issues, I have another POTS related condition, where my blood volume is very low...meaning, there is not sufficient blood traveling through my veins.  Because of this I am severely dehydrated - always.  My doctor told Jimmy to be sure that I ALWAYS have a big glass of very cold ice water next to me 24/7.  There are times that I am hit with what seems to be like an emergency situation to get fluids in to my body.  This happens several times a day.  I guzzle, guzzle, guzzle.  When I do this, I can actually feel it being absorbed in to the roof of my mouth.  This is not the same as simply being thirsty.  The low blood volume is a nightmare when it comes to having blood work done.  Half an hour prior to having a needle put in my vein, I drink between 1/2 gallon and one gallon of water.  This helps expand the blood volume and makes my veins accessible to the nurse.  There have been times where I have been sent home because they just cannot get to the vein.  Luckily, now that I know about bulking up with the water, it has been smoother sailing in that department.  I have to say I am a nervous wreck.  On Wednesday, I am having the Barrett's biopsy.  This is done with the endoscope.  This involves getting an IV to administer the sedative.  UGH!!  I am forbidden to drink anything for many, many hours prior to the test.  I cannot imagine how they will get my skinny, threadlike veins.  I just hate it when they have to route around looking, and looking, and looking.

With POTS, my blood drops from my brain, heart and lungs to my legs, after standing no longer than fifteen minutes.  Soooo, when cooking dinner, I have to break very simple recipes in to several steps.  I'll stand as long as I can, stop get on my back.  As soon as I feel the blood has worked its way up, then, I'll tackle the next step.  Usually, I try to push it and get as much done as possible each time I am standing.  When I wait too long, my body basically crumbles.  I begin sweating profusely, tremors, difficulty talking w/o slurring words, my heart races, breathing becomes labored, a feeling like my lower back was hit with a 2 X 4, which causes intense back pain.  There is a debilitating weakness that occurs and I have to take baby steps back to my 

bed, saying oh my God, oh my God, oh my God. By the time I get back to my bed, I am shaking and gasping for breath. My bp and heart rate have jumped by at least thirty points, from before I stood up. This is a daily issue, unless I stay in bed all day.

I do have to toot my own horn...today was a very productive day. By my standards, it was the best of the best.  On the downside, I had to miss my precious three year old granddaughter's first dance recital.....Oh, it tore my heart out.  I heard she was one of the best.. Gabby is so much fun! The recital started one hour after I finally went to sleep this morning.  

I woke up around 2:30, had my usual rough first hour, then accessed my situation.  I made a great dinner ~ very similar to Bonefish Grille's bang, bang shrimp.  It may have taken me four or five trips back to the bedroom.  Also, I washed my sheets and put them back on my bed.  The best part was my shower...aaahhh.  Showers are not fun and most days too difficult and too much energy involved.  It always amazes me how difficult it is to wash my hair and the normal rub-a-dub.  Before getting out of the shower, I have to squeegee the glass doors :(.  Then comes drying off with the towel.  The exertion it takes to do this, causes my POTS symptoms to kick in. For me, this  takes an excessive amount of energy. I sweat like crazy while drying off! It felt so wonderful to slip..actually collapse, in to my bed with clean sheets.  This was a banner day.  It felt amazing to actually accomplish something - making dinner (although, it was too ambitious for my condition), washing my sheets, making the bed and taking a shower...I am all that and a bag of chips...but I really need to switch out the chips and replace them with celery sticks...like yesterday!!  I get a day like this maybe once a week. 

I guess my final words on POTS would be the negative impact it has on my aortic aneurysm and bad aortic valve.  It is imperative that my bp is in check. With POTS, my bp jumps very high and overrides my bp medication, when I am vertical.  When this happens, it is possibly accelerating the growth of the aneurysm and thickness of the aortic valve.  My doctors are trying to hold off as long as possible with this surgery.  With POTS, I am only to have life saving surgery, as it puts me at a high risk. MY doctors are holding off as long as they safely can.  There are more complications for me regarding the surgery, but I can see this can go on forever.  All this, and I am only trying to explain the impact of POTS on my life.

It seems like I never actually delve in to my specific illnesses.  I have many more serious things going on, but will wait for another time.

This should give you all an idea of the impact of POTS in my life.  This is really more relevant for my sick readers, but know I need to share this information.

Still on my Words With Friends frenzy. So much fun!  There are times when I have as many as fifteen games going at once. Love playing...and love turning the TV off!

I know this wasn't a fun post, but I suspect many of you are wondering..."yeah, but what's wrong???"  I'll gradually get in to it.  If it were a matter of a single diagnosis, I would have spit that out the first blog.  Believe me, I'm doing you a favor by breaking it all up!

Sorry for the blaaahg... hoping for a better post next time.

Good morning everyone and good night to me... 

  

They always start out the same way...

...I sit here at the computer, not tired enough to sleep and not awake enough to write.  So often, I've started out writing, not expecting to actually publish the post.  Not too much to say, just painfully bored at 3:30 am.


The one thing I really did want to write about is/was Mother's Day.  After my mother was so horribly sick in December, I never would have thought that she would be so well for Mother's Day.  It made me especially excited to celebrate with her this year.  Unfortunately, she has some type of stomach bug, and couldn't make it.  Oh, I was so disappointed!!!  


On the flip side, it was still a beautiful Mother's Day.  Ryan and Liz had us all over for a cookout.  Everything was delicious! I'm afraid they are going to regret buying the perfect party house!! Danielle surprised me with our (Danielle and my) favorite wine we used to have when we lived in PA.  Mondavi Fume Blanc ~ YUM!!  I was shocked when I saw the bottle, since it is not always easy to find.  It felt like the good ol' days...lucky for everyone that we didn't start singing songs from "Rent"!  If we had, I would have ended up renting a room at the hospital! If only my mom, Phil and Laura could have been there too.



Brayden, Gabby and Maks never fail to deliver!!  They are hysterical and so much fun to watch....and hug...and kiss!! They warm my heart! 


I was so sick last week, I was afraid that I wouldn't make it to the party on Sunday.  It is always such a long drawn out process, just getting ready and out the door...exhausting.  The first hour was a little rough, but then the adrenaline kicked in.  I'm starting to see a pattern.  Sometimes I am lucky enough to have the adrenaline kick in for special days and holidays.  Since I am pretty much house/bed bound, they really are the only times I need to be vertical.  Unfortunately, when the adrenaline does give me a boost, it doesn't seem to know to cry uncle...sandman.  After we came home from Ryan's, I expected to completely collapse and sleep.  With the speed turned on high, I ended up not sleeping at all last night.  Today was a horrible day and here I am still not sleeping.  So, it turns out that the adrenaline rush is both a blessing and a curse.


I still haven't gotten around to setting up my more private blog.  Because of my condition, I am looking forward to really unloading.  I will write about things that I would be more comfortable writing, knowing that only very sick followers are reading.  There is some comfort in reading about someone going through the exact same physical/emotional issues that come along with being chronically ill.


Well, that's all folks...and, belated Happy Mother's Day to all my friends and family...I hope your hearts melted and smiled like mine! 


So funny, I was just reading over the blog, before posting, and "Seasons of Love" from "Rent" came on my playlist!  ;) Danielle