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

Not sure I should be writing,...

... been waiting for better days to come. Not expecting them anytime soon, so, thought I would give the blog a shot anyway. I had to medicate to the max tonight, which is why I am sitting at the computer. Hoping not to be too heavy in the woe is me department. (just read over the blog....eh, little heavy on the woe is me ...fair warning!)


I've been exceptionally sick for several months now, with a deeper decline the last week or so.  It really is practically impossible to describe what I go through to a well person.  I have a sweet friend in Seattle, Vicki, and we suffer with very similar symptoms.  We were comparing war stories the other day.  When describing how horrible it has been lately for us both, we agreed on the only way to describe it.  It is exactly how we would expect a terminally ill patient to feel, within days of death. (My doctor told me to expect that exact feeling, comparing it to an AIDS patient within two weeks of death)  Obviously, this isn't anything a well person experiences.  Because of that, it is  hard to convey the depths of my condition.  When I am at that lowest point, it is scary.  Even though, I know that death isn't imminent, it is still the creepiest, eeriest feeling throughout my entire body, with my muscles feeling like they are decomposing (I know I have brought that up several times before).  During these times, I also experience extreme nausea and my brain, as a muscle, is too weak to think or process any information. 


A few months ago, Vicki asked me to write about grieving the lives we lost.  Unfortunately, this is not a one time issue.  When it comes, we have to do our best to get through it, only for it to surface again a little further down the road.  This has been especially hard for me this past week.  It can be unbearable.  I remember so crystal clear the real me....almost within reach.  Last week, it began with incredible sadness at moving from our last home....and for those that know the reason, you can imagine the thoughts that go through my head.  The bitterness is all consuming.  After stressing about that, I then thought, "hey, I not only want my old house back, but I want to be well, have a room decorated for my ADORABLE grandchildren, pick them up, take them to parks, and back to Mimi's house for a swim and sleepover".  I want my house and I want me...and I want my old speedy Gonzalez power walks and just enough design appointments ~ so much fun!!  I want control over my life. I want to make big dinners and have everyone over. I want to fly back to PA to visit my amazing friends and family.  I want Jimmy and I to enjoy what should be, the best time of our lives.  Empty nesters...with nothing to hold us back from coming and going as we please.  Since I got sick at 48, we were completely robbed of what we worked our entire lives for.


I miss my lifetime friends horribly.  In the past few years, I have painted myself in the corner and distanced myself from everyone.  Being sick as I have been, it is hard to have a conversation and put on a show, like I am the old me.  It is impossible.  Because of this, I prefer not to call because of all that I am going through.  There is nothing anyone can do or say to help, so it is kind of awkward.  I am not one to call and cry on anyone's shoulder.  Let's face it, after seven years that would get old real fast.  Not to mention, when my brain is feeling especially weak, the calls are just too much work.  I know that sounds crazy to a well person, but it is true.  UGH!!!! So hard to believe that I have created such a distance from all my favorite people in the world...all my doing.  


Luckily, I do have occasional fun catch up calls.  They are so far and few between. My brain has to feel strong, as well as my body.  The excitement of these calls can take a huge toll on me.  Looking so forward to the next one....who will it be????


My neurologist received the results from my spinal cord fluid tests.  Unfortunately, there wasn't anything to explain my high CSF pressure around my brain.  It is double what it should be, but not at the very serious level yet.  He plans on doing routine spinal taps every few months to monitor the number.


I saw my endocrinologist and was so happy he didn't put me on insulin, which he almost did on my previous appt.  My numbers have improved, but by a minuscule amount.  Lucky for me, that was enough for him to hold off.  On the flip side, he said that my kidneys function tests came back above normal for the first time.  He will be retesting that through blood work every three months.


Friday is my endoscopy to biopsy my Barrett's Esophagus, but not expecting any problems.  


So, anyway, I am still on the Words With Friends kick!  It is so much fun.  I play with some friends, Beth, Barb and crazy Marie.  Marie and I sometimes have as many as ten games going at once.  In our case, the game is secondary since we spend most of the time instant messaging.  Last Friday, Marie was unavailable and I was itching to play.  I had WWF find a random opponent for me to play. They set me up with a woman that is insanely good at this game.  I hate to think what my blood pressure was!!  It has been so much fun playing her too!! After a while with her,my brain starts waving a white flag!!  If any you guys want to play, my user name is coralspringsmimi ~ hey, I'm a Mimi and proud of it!!


The medication was great to get me up and posting again, but it's time to get back to bed.  In the end, I guess this post is more geared to my very sick readers.  This is a very, very hard life. I know they hear me loud and clear.


Before I go, I want to think of something happy.  Hhhmmm, let's see...hhhmm, still thinking....uuummm....this is crazy, I know there must be a  hundred things I could think of...well, obviously my precious little grandchildren are the happiest times...EVER!  Just thinking about them, or hearing their latest funny stories is always great medicine.... and,I could even operate heavy machinery at the same time....take that Pfizer!  


Sorry about the heavy post, it is what it is and I know my sick readers need to hear there are others like them.  I am staying as horizontal and still as possible.  Hoping to be back with a more fun post....XO


One more thing....I mentioned a few weeks ago, that I deleted my more personal blog.  A blog intended for chronically ill, their caregivers and others that have been through some type of health hell and back.  I deleted it when I discovered that it popped up when my name was googled.  I could have died when I realized it was so accessible and public :(  In talking about this with my son, Ryan, I am pretty sure I can set it up again, keeping it private ~  invitation only.  The past few weeks, I really needed that personal blog to go to and unload things I wouldn't post on here.  When I am up to navigating my way through the set up, I'll get one going again.  I will let you know and ask, once again, who would like to be included.

Long time, no see!

So hard to believe that it has been a month since my last post. As the one month mark was approaching, I decided to see what I could put together.  Usually, I really don't have to put anything together, as I just write like I am talking...so easy.  Tonight, I am just going to say a few things and get back to bed....couldn't let the month mark come and go!


I have been having a hard time for the past several months, with no sign of an upswing...and, from what the doctors say, no reason to expect one.  My problems began seven years ago with debilitating neurological symptoms.  


Approximately two years ago, my autonomic nervous system issue, P.O.T.S/Dysautonomia was diagnosed at Vanderbilt...the leading Autonomic Dysfunction center in the country..so they say.  POTS is a definite setback, since I need to be horizontal for most of every day, to keep the symptoms in check...debilitating symptoms. Getting this additional diagnosis, was like getting kicked while I was down. This has no connection to my original neurological issues, which are still up and running.  


Unfortunately, I now have another problematic issue to tack on.  Again, this is relatively new the past several months.  My cerebral spinal cord fluid pressure is double what it should be surrounding my brain.  This is a dangerous condition and we need to act on it soon.  My neurologist, at the time of my spinal tap, ordered four vials of fluid to be drawn and tested for everything under the sun..hoping to come up with an explanation of this newest guest at my party.  I'll have the results the end of this week. At this point, I hesitate to say too much about what this might indicate, since we are hoping to gain more information from the fluid test results.  I'll write when my neurologist has this figured out and a game plan in place.


The heavy pressure and stiffness in the back of my head and neck has made my brain all but shut down.  There really is nobody home these days!!


I was lucky enough to babysit the grandangels for a short while this afternoon.  They are the happiest and cuddliest babies I have ever seen.  They are like "Grandchildren Soup for the Soul"...so heart warming.  Before I went, I knew I should have not left my bed.  I decided to go, since chances of improving do not seem to be in my future.  If I didn't go when having bad days, I wouldn't go at all.  I decided to just go for it today.  They were so precious and well behaved.  Luckily, Jimmy came at the end to relieve me for the last fifteen minutes.  I came home and was in a horrible condition...the kind that is scary. But, if I had to do over again, I would have done the same.  The hugs, tickles, laughing and snuggles are priceless.  As much as my physical condition suffers, my heart is just exploding with the most precious love you can imagine.  I can't do it all the time, but when I do go, it is ALWAYS worth the price to pay later. Hoping I will be able to go for a short time again one day next week.


As I said, my brain isn't working at full capacity these days.  I know there was something really funny that happened recently.  I was looking forward to sharing, but for now it is lost in space.


I have to wish belated Happy Birthdays to my brother John, sister-in-law, Lisa and my friend of forty five years, Rick!!  Happy Birthday and nothing but love and best wishes for a beautiful, healthy year for you all!!...and, XOXO


I am so out of it, so please excuse the grammatical/spelling errors.  Not a night for proofreading.  


Thank you to all that are reading.  I am always amazed when I see the number of hits. Thank you all for your support!  I feel less like I am alone in this (as the Bachelor would say..) "journey" :)


My playlist is now playing Andrea Bocelli, singing "Time To Say Goodbye"..he could say that again...oh, he just did!  I can take a hint.  Time to melt in to my bed and pillows....

Back with the living...

I am happy to report that the worst is over with this last dip.  What a nightmare that was.  Earlier, I read the post I wrote last night, and I really did have a lot of misspelled words and disjointed sentences.  Believe it or not, I actually proof read it first!  You should have seen it before I made the corrections that I caught ~

I am back to my old/new normal, which is still a challenge.  The doctors have told me that I can only exercise in bed.  Lately, I have been doing some leg exercises (some days I can, and others I cannot) and I am wondering if that is what propelled me in to this recent mess.  

Since this overall harder time began, several months ago, I know to lie low.  I'm going to have to continue on this path. For whatever reason, I go down so much faster these days, from the littlest bit of activity. At this point, I am readjusting my expectations.  I pretty much "get the picture" and have been living accordingly.  

As crazy as this may sound, I wish I were still in that nightmarish phase...only because I want my symptoms in full bloom while the MRI is being done on Tuesday.  I guess it really doesn't matter, but I think it wouldn't hurt.

With the double brain MRI on Tuesday and my GI appointment on Friday, this week will not be the greatest.  Whenever I feel the time is right, I'll pick up the phone and start touching base with everyone...it is always like a party!

Not foolish enough to push my luck...back to bed.

Shocked that I am sitting here writing...

..the past few days have been about the worst that I have had to deal with, since 2005.   I always feel like I should explain, when I do a lot of complaining...not too many jokes.


Actually, there are two reasons that I am sharing this with you. My most important readers are the chronically ill.  I want them to hear about the true depths caused by the extreme symptoms....to know that I GET IT!  My number one allegiance is to the sick and ailing readers.  Over all, I do try to pepper the posts with the unexpected rays of sunshine that are always right around the corner. I can honestly say that I usually do not have to look too far to find them.  Yes, I am sharing the worst, but, no doubt, there will be a woo hoo post coming around the corner....the power of suggestion...this just can't last at this level too much longer.


The second reason I am writing about this, is for the several, very important and overdue phone calls I need to make.  I apologize with all my heart for not answering e-mails or phone calls.  Hoping that I will be able to get some calls returned in the next few weeks.  With my endless delays in returning calls/emails, I am afraid that some might think that it is not possible to be too sick to talk on the phone.  Trust me...it is very possible.  Not to mention, with the lapses between calls, the catch up calls are very long and I really do get my adrenaline pumping, hearing everyone's stories and updates.  As anyone would ask, the first question is "So, how are you??"  "What's the latest with the doctors?'.  In my unique situation, it is incredibly hard to describe what is going on. There several very serious issues, some affecting the others- issues and some go hand in hand with others, yet.  I almost need a flip chart to explain.


Overall, I have been very sick.  It has been difficult, to say the least.  My stamina level is pretty much in the negative column every day. I have many symptoms that are hard and debilitating. keeping me always close to bed.  Most of my days are spent in bed...doctors orders.  Unfortunately, I can still get blindsided, even when staying close to bed.


Starting on Thursday, I had a radical decline.  To say it was intense, is an understatement.  My immunologist said that when I am at my worse, it is equilevant to an HIV patient, within two weeks of death.  That is exactly what it feels like...but more like two days to death.  Indescribable....expecially, with the feeling that my muscles are decomposing.  This sensation is impossible to adequately describe.  A nightmare??...I wish.  It is so horrible.  There is no medication for these symptoms  Times like this, I wish I could knock myself out and just sleep through it.                                 


As I posted on Thursday night, I mentioned that my hands were continually freezing up in a claw position.  Because of that, and my brain fog making it almost impossible to type, I cut the post short.  


What happened next, lasted until late this afternoon....almost two days.  The symptoms that I am about to mention are not new to me.  


My legs, feet, forearms and hands were horribly numb and without sensation. I dropped everything I picked up and my balance was horrible. This concerned me, since in the past, I have had these symptoms, but there weren't concurrent and were momentary...then POOF, they were gone.  


Three straight days of this was unbearable.  I had constant lighting bolts of nerve pain, shooting all over my body, like fireworks. In addition, my muscles were jumping.  It is like having a baby in side me, kicking....a strange baby that kicks in my legs and arms..not just my abdomen.  


The lower, back of my skull was filled with an enormous pressure.  It is not like a headache, but incredibly uncomfortable. My head, felt like I was completely drugged (separate issue from the head pressure) Unfortunately, there are NO medications for any of these symptoms. When the lower skull pressure accelerates, then it continues to the back of my neck and the very upper part of the middle of my bake. This and the drugged feeling are two different issues.  When the neck and upper pain begin, it is like my head is leaning back.  I have to consciously hold my head upright. 


My muscles kept freezing, like I had described in my last post.  This is not like a muscle cramp, which is another huge issue for me, but rather it is like the muscle has frozen.  This even happened on my upper/right back.  My hands were constantly freezing up, as well as other muscles.


I was also having endless involuntary body movements and jerking in my arms and legs.  Like I had said earlier, these are not new symptoms, but never, ever had this last for days.  There was shooting, electrical type nerve pain, all over my body. Overall, it was a nightmare experience...very scary.


With my autonomic nervous system issue, it causes my nerves to fail to deliver the message to digest the food to my stomach and digestive system.  That is a miserable condition - Gastroparesis.  Because my stomach isn't getting the message to digest my food, there are times when the food sits in my stomach until it rots and liquefies. This causes horrible nausea. Unfortunately, it also affects my lower digestive system too...TMI..eeks, I know.


I was lying in bed, and my body was moving, involuntarily, along with SO many other things going on.  If it had gone up one more level, I would have gone to the ER.  It was like I was possessed....and wishing I could be repossessed!!!! It was just horrible.  While lying flat on my back, my central nervous system was misfiring signals to all the wrong place in my body, like a machine gun. I really believe that this is almost impossible for a well person to understand. It is like nothing a well person ever experiences, even with the worst flues, virus, surgery recovery, etc.  I've been to all those places, and this is another world. 


As it turns out, I have a very imporant Brain MRI on Tuesday.  First is the usual, looking for MS lesions.  The second is checking the pressure in my head and how much spinal cord fluid is present.  After what I have been through the past several days, I cannot imagine that an answer isn't going to pop on the films. Let's get the show on the road...please!


Today was nightmarish also...it is so scary.  Even though I believe that I am NOT dying, I swear that dying must feel just like this.   I am still very sick and not expecting much for tomorrow.  I have to stay in bed...  Writing this post is difficult and will be signing off soon and getting on my back.


I AM listening to my body...because of that, I am rarely out of bed.


Being chronically ill, for the past seven years is a struggle, as much as I would love to say it isn't.  It is honestly indescribable.


This post is more for my friends/family that are waiting for calls and not getting them.  Hoping this will shed some light on my complete and total disappearance.


Friday, I have an appoint with my GI doctor.  I have a condition called Barrett's Esophagus, which is precancerous tissue.  It can progress, but chances are that it will not.  To be sure, I have routine biopsies.  We'll be scheduling that for the next week or two.


I can't sit here another second.  Back to bed, and hopefully to sleep.
Again, I apologize for living under the radar these days.


Oh..one more thing!!  After I wrote the last post about "Patches..I'm Dependin' on You Son".. I spoke to Chris and Ryan.  They had absolutely no idea who Patches was!  I didn't check, but I think it may have come out around 1971?!?..not sure. It was such a cornball song.. I assume everyone would know about this stuff...I guess I'm showing my age :(


Well, I didn't point out any silver linings...just too sick to sit here another second...they are there!!!


GOOD NIGHT!!!
disclaimer...I did my best, under my circumstances...I know there are countless grammar and spelling erros....I don't care tonight...

Patches...I'm dependin' on you son...

...well, my pain patch, that is.  Last week, my pain management doctor gave me a pain patch prescription.  He did warn me that there would be a snafu with the insurance company, and there is.  So, still waiting on that.


It has been rough, overall, for a while now.  Lately, I have crumbled with surprisingly (even to me) little exertion.  Yesterday, I felt like I had enough life in me to play around in the kitchen.  I decided to make a homemade roasted eggplant pizza.  (it was so delicious, I'm tacking the recipe on at the end of this post) Once the pizza dough was rising, I started to think of what else I could make with yeast, so I dove back in to make cinnamon buns.  Believe me, I know that it is the last thing I need.  For some reason, I just felt like cooking...and, I really do enjoy it. 


By my standards, it was a lot of in and out of bed, and back and forth to the kitchen, for the different stages of these two recipes.  I knew batter..I mean better, but did it anyway.  By the time the pizza came out of the oven, I was way beyond my breaking point.  I was insanely sick last night and this morning. It was absolutely horrible.  I have so many symptoms, many that cannot be helped with my son "Patches", or any other medication.  Anyway, one of my most miserable symptoms is that creepy, eerie feeling like my muscles are decomposing from the inside out.  It is the worst.  I had to put the TV on this morning, just for a distraction.  Otherwise, I think I would have snapped. Bad, bad day today.


Since I love cooking so much, I've been spending a lot of time in bed looking up new recipes for Easter.  Ryan is having Easter at his house this year, but I would still like to cook, cook, cook.  I called Ry earlier and started out by telling him all the different dishes that I would like to make.  As I was talking, I was thinking to myself how sick I was today...from COOKING.  By the end of the call, I basically told Ryan that I take it all back, I'll make one thing.  (Erica...remember taking Poor Ryan to Wawa...or was it Wendy's???)  I giveth and taketh away...  In the end, I knew that what I would like..no, make that, love to do, and what I could do are two completely different things. 


I'm going to have to cut this short.  It is hard typing when feeling as sick as I do...my brain isn't working and I am backspacing every other word to retype and retype again.  Also, I have been having a newer issue called transient paralysis.  It sounds worse than it is. Basically, my hands freeze up from time to time.  It is momentary, but for some reason it is worse than ever right now. It is too hard typing with my hands freezing up.


Thank God for copy/paste...


Eggplant Pizza....SO DELICIOUS!!

• 
  
  • 1 large eggplant (1 1/4 pound)
  • About 3 tablespoons olive oil
  
  For dough 
  • 1 (1/4-ounce) package fast-acting yeast
  • 2/3 cup warm water (110-115°F.)
  • 1 2/3 cups all-purpose flour
  • 1/2 teaspoon salt
  • 2 tablespoons olive oil
  
  
  • 3 ounces grated mozzarella (3/4 cup)
  • 3/4 ounces grated Asiago or Parmesan (1/4 cup)
  • 2 tablespoons olive oil
  • 2 tablespoons minced garlic
  • 1/2 teaspoon dried hot red pepper flakes..it's spicy with the red pepper flakes, but we like spicy food.  You can adjust to your taste.

preparation

Broil eggplant:
Cut eggplant into 1/3-inch-thick rounds and arrange in 1 layer on a foil-lined large baking sheet. Lightly brush both sides with oil and season with salt. Broil 2 to 3 inches from heat until golden brown and tender, 3 to 8 minutes on each side.

Make dough:
Dissolve yeast in warm water. Blend flour and salt in a food processor. Add oil and blend. With motor running, add yeast mixture all at once, blending until dough forms a ball. Knead dough on a lightly floured surface 5 minutes. Put in an oiled large bowl and turn to coat. Let rise, covered with plastic wrap, in a warm place until doubled in bulk, 1 to 1 1/4 hours. While dough is rising, put a pizza stone on lowest rack of oven (remove other racks) and preheat oven to 500°F.

Dust dough with flour on a floured surface, then shape and stretch into a 12- to 13-inch round. Sprinkle a baker's peel generously with flour and carefully transfer dough to it. Jerk peel; if dough sticks, lift it and sprinkle flour underneath.

Assemble pizza:
Toss together cheeses and sprinkle 1/4 over dough. Cover with eggplant, overlapping it, and sprinkle with remaining cheese. Heat oil in a small skillet over moderate heat until hot but not smoking, then cook garlic and red pepper, stirring, until just fragrant, 30 to 40 seconds. Spoon evenly over eggplant.

Line up far edge of peel with far edge of stone and tilt peel, jerking it gently. When edge of pizza touches stone, quickly pull back peel to transfer to stone (do not move pizza) and bake until dough is crisp and browned, 12 to 15 minutes. Slide peel under pizza to remove from oven.

Feeble attempt at blogging...

Today, I had two appointments in Miami.  UGH, I was dreading this day since I scheduled the visits. The first was with a new pain management specialist.  He was the best. There are so many people abusing prescription pain medication, that even pain management specialists are hesitant to write prescriptions.  Usually, they need to see an X Ray, MRI, etc.  This guy was great!  He believed  what I was telling him, and really seemed to care.  PHEW!!  If he questioned me, I think I would have cried.  He is taking over my Vicodin prescription (my immunologist is no longer permitted to prescribe it, due to insurance reasons).  I explained to him that I am in pain, to some degree, almost every minute of the day.  In most cases, I do not take pain medication until I am about to the point of tears.  I was thrilled when he said that he was also prescribing a pain medication in the form of a patch.  He said that it should relieve  most of my pain throughout the day.  At times when I still need more, I can take the Vicodin too.  I will get it tomorrow and cannot wait to see how it works. Taking away the pain is so great, but unfortunately, there are still so many debilitating issues I deal with daily that it won't put me back in the game.  I'll just be more comfortable ~ which is a bonus.  Hopefully, it will be effective.  

The second appointment wasn't quite so smooth.  This appointment was with my immunologist.  I  have to say that I am not 100% convinced that I should be seeing her.  It is funny because my neurologist referred me to her, then the following time I saw him, he wasn't so keen on the idea....agreeing with me that she has me pegged wrong.  SO tired of the doctors contradicting each other and themselves..ALWAYS!!!!!    It was an awkward, funky appointment.  

Dr. Rey has just left the University of Miami and is now in her new location.  She is in the process of getting the insurance situation set up.  This appointment could have been put off for months.  We only had to go over my blood work.  So, when setting it up, the receptionist told me that they were not set up for accepting insurance yet and what I thought she said, was that there would be a $69 charge.  When I was paying, she told me it was $269.  I must have misunderstood the receptionist on the phone, but I can't tell you how mad I was at myself.  Waiting for her insurance to be in place, wouldn't have been a problem.  It certainly was not important enough to pay $269....whatever...

On the way home, I thought of two very important questions that I had for her.  I don't know how I forgot to ask them while I was there...whatever...

I do have to tell you about a couple that was in the waiting room with me today.  I'll never deny that I feel sorry for myself, from time to time...privately.  My experience in the waiting room today was like having a bucket of ice water thrown in my face.

It was a man that was approximately seventy, with his fifty-seven year old wife.  They had brought his sister to her appointment.  The entire time I was sitting there, his wife was talking endlessly and it was obvious that she had some type of mental problem.  That alone, made me feel bad.  For some reason, he started talking to me.  I think he felt like he had to explain her behavior, which of course, he did not.  His story absolutely broke my heart.

When his wife was in her mid forties, she was diagnosed with Alzheimers.  UGH ~ I felt so sick and so sorry for this poor man.  He was the sweetest guy. I asked him if he has help at home and he said that he did not.  This woman is so far gone and advanced with this disease.  He cannot take his eyes off of her for a second.  She was bilingual, but no longer remembers English. I asked if she watches TV and he said no, but he would like to.  He cannot since she talks incessantly.  I never knew that nonstop chatter was a symptom of Alzheimers.  She literally never stops.  He said that there is help available for people in his position, help coming in to the house, etc.  Unfortunately, both he and his wife are on social security and they are considered to have too high of an income to qualify for the help....such a joke.  He was also saying how hard it is for him, just to keep her expensive adult diapers stocked.  His car is always equipped with anything they might need in an emergency, since she has to be with him if he has to leave the house.  If only I could go to his house and sit and talk with him and give him an outlet to vent....on the other hand, I guess the last thing he would want is another talker stopping by...Oooohh, I hated to see them leave without offering to help them in some way....just broke my heart...and, I was ashamed for all the times I had sung the blues. I cannot get them out of my mind.  It is people like this, that I would love to help in some way.

Jimmy and I went to Big Bear for salads tonight.  I couldn't cook after coming home from Miami.  Big Bear is next door to the best hair colorist....ever!  When we were walking to the car, I noticed that Lou's lights were still on.  Being sick, I haven't been back to see him in almost three years :(.....I knocked on the door and caught him before he left the salon.  I love Lou!!!  It was such a huge treat to see him and give him a big hug, then another, then another...such a happy surprise!!!  Sooooo.....

...this day had highs and lows, which is better than no highs at all!  I'm really not doing good, but wanted to write about today....the good, the bad and the ugly hair.

Good Night Gracie~ 

Road Trip...

I'm sitting in the waiting room of my neurologist's office, at the University of Miami. These appointment days are always so hard, physically. I dread them!!!! Tomorrow I have to come back for two more appts, it will be horrible.


Okay, I need some birthday candles to blow out, because I have some wishes. First, I wish doctors made house calls, preferably at the same time so they could "discuss" and stop contradicting each other. If I get a second cake/wish, then I would love to go to my appt's in a chauffeur driven limo, with plenty of space to put my legs up and my head down......


....... Okay, the doctor called me in and abruptly pulled me from my birthday candle daydreaming. I'm now home in bed... Hallelujah!!!!!!!!!!! Can I hear an AMEN?!?!?!?!


Today was such a bad physical day for me. Having to do the Miami trek was the worst ... unfortunately, I think tomorrow will trump today. I am too weak and in too much pain to walk more than room to room in our house. The extra walking at UM was just too much. My balance was horrible and my legs got so heavy, it was hard to put one foot in front of the other. I have to say that my neurologist's office is the one place where others do not assume I am drunk/drugged, because we are all in the same boat....the Titanic... J/K... Tom Sawyer's raft...


I usually don't go in to too much detail about my appt's, but in thinking of all the sick readers of this blog, I'll throw some current information out there. Every once in a while, I think it is good to open up about my issues ... considering that this is what the blog is about. Like I have said in previous posts, I want the chronically ill to know that I do identify with them.


As sick as I am today, it was a good appointment and worthwhile. I have many issues, but this neurologist is only focusing on my leaking spinal cord fluid. Once he gets a handle on this, he is going to get back to the MS concerns, with the elusive lesions that are needed for a diagnoses. The suspected MS component is by far the least of my concerns....both regarding symptoms and the fact that there is no treatment for PPMS. It can take a really long time to be diagnosed, especially since they are thinking primary/ progressive MS. At this point, I do not have an MS diagnosis and my other issues are more concerning. We'll get that figured out eventually.


I was under the impression that the leaking fluid was not a concern (this is where my son Chris would say "and you got your medical degree from where????") anyhooooo, my doctor said that he suspects I am leaking a good amount. Still not being concerned, he then told me that it can kill me....whaaat??? Okay, he now had my attention. He said that if my brain isn't sitting in the fluid, it could rupture arteries around my brain and some other things. I do know that people can leak fluid and never know it or have problems.  Guessing my doctor is basing his concern on my test results and symptoms.



I have a few more tests to do, then it would be on to the neurosurgeon.. ..draaaaaging my feet...literally and figuratively.



Back to the spinal cord fluid issue.  My doctor said that he has another patient with the exact symptoms as me, with the exception that she has to be brought in to her appointments on a stretcher...UGH!!!  He did say that this is a postural issue.  So, along with my autonomic dysfunction which causes my blood to drop to my legs when I am vertical, my csf leaks also occur when I am upright. 




This has shifted to priority for now. I am having a special MRI, which would measure the fluid around my brain. Also, he will be looking for MS lesions at the same time. I was surprised that this MRI, of only the brain, will take close to two hours :(. I have had countless MRI's over the years I am so beat up by the time the test is done. In the past, any lasting longer than an hour, would have been for more than one area. My problem is lying perfectly still for such a long time... It destroys my muscles and I have to be helped back to the dressing room...even though I pre-medicate with Vicodin and Xanax.


Tomorrow, I have an appointment with my immunologist, which is another major contributing factor to my overall poor health, due to my seriously compromised immune system. We have a ton of blood work to go over. This will be an important appointment too. Immediately following is an appointment with a new pain management specialist.


I can't believe how many details I am leaving out. I think if I really delved in to all that is happening to me medically, you would all think ... Really?????? No, reeeeaalllyy????? I can never list it all in one post, because it really is hard to believe.....so, wanting to appear credible, I will give snippets from time to time.


As most of you know, I have a second, more private blog. I limited it to those that are also very ill, as well as others that have been to hell and back for various reasons. I loved going to that blog on the rare occasions that I really needed to let it all hang out. It was a great, safe place to talk about things that I wasn't comfortable talking about on this blog. Unfortunately, I found that it popped up, simply from googling my name. Not feeling so safe anymore, I deleted all the posts. It was entirely too personal to be so public. I might start it again with a fictitious name.. Cathy Springsteen perhaps???? 


I'd like to think of something that I am grateful for, before signing off. The hard part is picking just one! I'd have to say that it would be the super fun third birthday party for my sweet Gabby! It was the best and we all had a great time!!! The kids are too precious for words - little bundles of love! A nice thing about writing this blog is that I wouldn't have otherwise stopped to think of something to be grateful for today... :)


Even though I am writing this in bed, this is still too much. If I can, I'll write tomorrow after my appointments.


Hoping there is a limo outside tomorrow, to drive me back to Miami...


If you know my mom, please don't mention my blog to her....thanks..not even that I'm still writing...very important to me..


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