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!