2 Good Now Back to RESET Mode.

Yep...I had two good days, now I am back to needing be "reset".  What is up with my body??  I passed out 2 times and my stomach is feeling weird...I am SO exhausted I can barely move...*sigh*  I just want this nightmare to be over...

HOPE HOPE HOPE for a better tomorrow...

Good Day

I actually felt pretty good yesterday...I went to the bookstore to get Isabella her Valentine's Day book and got a couple for James too.  Then my Mom and I went to Whole Foods and picked up some stuff.  By the time we came home to drop off the food, it was about time to figure out what we were going to do for lunch, and since my Dad is off work on Fridays, it was good timing to all go out to a nice lunch. We headed down to my all time favorite restaurant, Mezes! I LOVE Greek food!!  I had the metzetelata (an eggplant dip) and I the chicken souvlaki for lunch...YUMMMM!

After lunch was nice and relaxing...headed home.  Played Beatles Rock Band with my Dad at night...and finished the work for my Mom.  It was a productive day!  HOPE HOPE HOPE the weekend goes like this!!

Doc Appointments but Good Day

So I went to my gyn and he told me that, in fact, the progesterone only pill I have been on since 2006, could be causing all the autonomic symptoms the 3rd and 4th week of EVERY month! I had a feeling that was true. He did not want to switch my pill, he wanted to take me off the pill altogether...I have to admit, that is a scary thought!  I haven't been OFF the pill since I was 14 years old, because my cycles were always SO painful!! When I told him that, he reminded me that I am a few years older now...HA...that is putting it mildly...I am almost 30 now..ugh...thanks for the reminder! So I stop the pill on Sunday...should be an interesting experiment! If I have major problems, I can always restart it...

My Mom and I then met my Dad for lunch at TooJays, which was actually pretty good.  Then my Mom and I went to Kohl's and I got a couple of new shirts, which were actually small...so that was NICE! We also got a shirt for Isabella for Valentine's Day.

Next up was my appointment with Leah...my therapist. Nothing special to talk about there...it is good to vent every now and then...healthy for me...although it doesn't help as much when I am having a good day like I was...lol...I really need to go when I am depressed.

HOPE HOPE HOPE this trend of feeling good continues!!! 

Blah...Again...

Woke up, couldn't seem to wake up all the way though...was so nauseas. Kept going back to sleep, but even after I woke up, I was still so exhausted.  I was so depressed, and I couldn't shake the feeling...I just KNEW I was going to faint, I just didn't know WHEN. Well, by night time I fainted, and then felt better...it was like my body hit the reset button...sigh...I felt more awake, I wasn't nauseas, wasn't as depressed or foggy...HOPE HOPE HOPE tomorrow is better so I can be clear headed when I go to the gyn and my therapist...

Migraine without Help

I went through yesterday with a migraine with no medication to dull the pain...no caffeine to ease the burning pain over my right eye for a while...nothing.  I suffered through it for the whole 12 hr day. I fainted at least 5 times. Each time I fainted, I went numb on right side...mostly my arm...twice I had a strider, needing my neurontin when I came around. Luckily my Mom was around when that happened. My Shayna barked when she wasn't there, alerting her that I was fainting...don't know what I will do when she is gone. I can no longer guarantee that I can get to my phone in time, since my arm goes numb before I faint. That scares me the most! I feel like I am going to die...like I am having a stroke...

I did a technique that I had never tried yesterday to get myself out of the pain...I tried "lifting out" of the pain. It worked, but only while I was doing it. As soon as I stopped, the pain returned. I was very disappointed about that! I go to the gyn on Thurs to switch pills and HOPEFULLY feel better each month...if it isn't the prednisone or an infection causing this mess! Who knows anymore??  I don't know how much more of this I can take!!!  I am tired...physically and mentally drained...

Don't know how much more I can HOPE HOPE HOPE...

3rd Week Hell...and the doctor visit ta boot...

It all started out ok...went to the doctor to get my urine rechecked from that mystery infection we didn't know I had in the hospital on the 16th...Then, sitting with my Mom, waiting to be seen, BAMM, like a strike of lightening in my brain, MIGRAINE HELL!! Not only that...the room starts swimming around me, the noise of the waiting room was intense, the lights were bright against the tile floor, reflecting off and making the dizzyness so much worse...everything was floating around me. I leaned against my Mom and prayed I didn't faint...I did NOT want a big scene! The nurse called my name a short time later...he was a large guy, and was very concerned when he saw me, I must have looked horrible because I could barely walk without stumbling and was crying. He led me to the bathroom so I could do a urine sample and then led me to the exam room. Another doc examined me because she saw how terrible I looked...she seemed interested, but I was too much for her too...she looked at the urine results 2+ white cells and some other non-specific findings and she said I did NOT have a UTI...UMMM...usually increased white cells mean something, plus I am having symptoms, PLUS I had an abnormal (although SLIGHTLY abnormal) test in the hospital. She spoke with my regular doc and said they would wait for the culture to come back before putting me on antibiotics...she was actually thinking about giving me a shot of antibiotics right there in the office (my Mom and I were horrified at that due to my long list of allergies and the fact that I was still getting over my last reaction...).

On the way home my migraine got worse...just have to make it through this migraine...no meds to help me now...*sigh*...don't know how this week will turn out...I hope hope hope it is better then it's start...the dreams are already putting me a panic...but I will write about that tomorrow...right now I just have to hope I make it through until tomorrow...HOPE HOPE HOPE...

Party Time

I actually made it to Marisa's birthday party last night! I was very proud of myself! I wore my sexy heels (tan, high, sandles, wood-look...SO hot)...skinny jeans (never thought I would be able to pull THAT look off!)...and a sheer tan-brown shirt that is low cut.  My look kind of fit in...even if I didn't really...I talked with a guy named Glen for the first part of the party...he is in a wheelchair, paralyzed from the waist down, with limited use of his arms.  He was VERY nice...lived in my neighborhood all my life, and even went to my highschool, but since we were a few years apart (he is older) I didn't know him growing up. Weird how you can live in  the same area as someone and never run into them in public.  I helped him with getting food/drinks. Then we headed into the other room to play Band Hero...I played bass guitar for a few songs and had a blast...wiggled around a little while other people played.  Had fun just hanging out.  Then there was some praying around the food and that's when things got awkward...I wasn't quite sure of what to do with myself after that.  I tried hanging out with Glen again, but I felt weird just sitting with him, because no one else was talking with us and I felt kind of left out, so I went to talk with Marisa and whoever else she was talking with (some really hot guy and another girl).  The guy was quiet and seemed completely uninterested in me but the girl was very friendly and of course I was included in the conversation with Marisa.  I ended up leaving the party about 9pm and that perfect timing...I was getting tired, even though most everyone was still having fun playing Band Hero in the other room.  I felt badly because I didn't see Glen leave, and I tried to find him to say good-bye.

All in all it was a great day!  Monday I deal with being sick again...for now I enjoy being HUMAN!  HOPE HOPE HOPE that feeling can last!

Mail

In the mail I received all my records from Cleveland Clinic...all the blood work and urine tests I have had done in the last few months, from both the hospital and the clinic.  I had NOT signed all that out...and yet, all 48 pages of records were there.  My Mom and I were flipping through my records when we came upon 2 pages that stood out from the rest.  One page was from my hematologist, and it showed that my bone marrow was suppressed...she told me that ALL the results of the tests she ran were NORMAL...umm...not  so much! I do not appreciate being misled! The other test that stood out was from this last hospital visit and it was my urine analysis/culture...it showed I have e. choli bacteria infection and it's sensitivities to 2 IV antibiotics...this culture result came in on Monday, and NO ONE contacted me!!! HELLO!!!! I have been getting sicker and sicker and NO ONE notified me...NICE! If I didn't get this packet, I wouldn't have known...I have been having back pain, frequency, and burning (thinking it's from the allergic reaction and a sore "down there"), and no one bothered to tell me that I have an infection brewing in my system...NICE! So now I have to call on MONDAY to get this taken care of...more time, more aggravation, more incompetent people not bothering to care about their patients...I am really tired of all this...

I just want to feel better...I don't think that is too much to ask...Is it??? Should I even bother to HOPE HOPE HOPE???

Not an Easy Answer...

I went to the dermatologist to see what the rash on my chest and pain in my muscles was from, and it turns out it was from the ketorolac...BUMMER! Yet another medication I can't take...and it WORKED :-( He also said I should bump up my prednisone to 60 mg and then drop down every 5 days by 10 mg...of course he didn't realize that would KILL me, if not literally, then definitely mentally!!  I am already on the brink...I am SO sick all the time, to have to go through all this again would seriously be a nightmare!  So he said that I could try to wait this out...but if it gets any worse that I would have to bump up...so here I go with more HOPE...not that HOPE has been doing me much good...

By night time I get the results of the thyroid tests...negative, of course! There can't be an answer for me...I knew deep down it wasn't something easy like that, but I was still hoping and praying...a lot of good that did me! G-d, I sound AWFUL! I hate being this way! This is NOT me! I was never this depressed!! I used to be Tigger, not Eeyore...now all I do is complain...I need to get it together...

I really hope that I can go to Marisa's party on Sunday..I think that getting out and being with people my age will be good for me! I hope I am well enough to go!  HOPE HOPE HOPE for now...

Yet Another Allergy...

Went out in the morning with my Mom to the bookstore and Whole Foods to "get healthy"...bought the SuperFoods Rx book that my friend Kristen recommended. It actually seems pretty cool! Lots of easy things to add into the diet, like blueberries and adding juice into my club soda to make it a "super food" will hopefully add some nutritional benefits. My Mom is really getting into it! Hopefully my Dad will follow suit...but he just doesn't seem to get the importance of eating healthy...especially when things are stressful, and things are ALWAYS stressful around here lately!

I noticed that the rash on my chest is MUCH worse!! I am also a lot achier! My muscles really hurt and I have a sore in my mouth and "down there"...maybe from the Topomax to 250 mg?? My Mom thinks it might be from the ketorolac...ugh! I don't know anymore!!  I called up my neurologist and told them I would be dropping my dose of Topomax back down to 200 mg just to be safe.  I am in so much pain by night time I can barely move! I have been having trouble thinking straight for weeks now, that was WAY before the ketorolac...and I went into the hospital for a rash, which is why I even GOT the ketorolac to begin with, we just blamed it on the Levaquin...Who knows anymore what is causing what...I am just ready to be off all these damn meds!  If I could just STOP the Topomax I WOULD! But I know that could cause I seizure...I sure as hell don't want that!!  It is such a clusterfuck!!!

HOPE HOPE HOPE it gets better tomorrow...always...

The Dreaded Migraine

Yesterday was strange...to say the least.  Although I had a migraine when I woke up in the morning, I was able to take the new pain medication, ketorolac, along with pepcid, and zofran and go about my morning with little problem. I went for blood work and out for a very nice lunch with my parents.  After lunch, however, I was due for another ketorolac, and boy did my body let me know it! I passed out in the car (going weak/numb in my right arm again) and feeling very strange afterward...the migraine was AWFUL! We got home not long after, and I quickly took the medication and laid down to let it work...the first dose took about 45-50 min to work on an empty stomach, so I did not expect to feel better right away, especially since I just finished a big lunch. This time it did not seem to be working at all!  It took about an hour and a half before I noticed any difference at all...and I did pass out again, where with the first dose I did not pass out at all.

By night time I was in so much pain and incredibly nauseous. I fainted one more time at night, this time going into a strider because I was going to vomit while unconscious...lovely.  I will call my doctor's office on Thursday to see about getting another MRI of my brain with/without contrast because this is getting out of hand! I am fuzzy headed all the time now...I forget things...can't think straight...exhausted...getting depressed...not myself anymore...sigh...I really think one of my meds is messing with my head...I say it over and over and over but no one listens...HOPE HOPE HOPE these tests come back with something so I can live my life again...HOPE HOPE HOPE

You'd Think...

You'd think I would feel better about things, since I feel better physically.  I should...I went out with my Mom to bring in her laptop computer to be fixed...AGAIN...but this time the tech guy seemed to take me seriously and wrote down all my concerns and told me the computer might need to have the whole operating system dumped and reinstalled (I told him to just dump Vista and install Windows 7 if that is the case...SOO much better). Then my Mom and I went to lunch at a diner next door and then headed to the Home Goods store (her favorite place to shop). It was a nice morning out for me, and the first one I had in a while. We even got to spend a few minutes with my grandparents, who I haven't seen in a while, with me being sick, then them being sick...

Afternoon was quiet, and night was spent playing Beatles Rock Band and watching AI and Biggest Loser, emailing my friend Kristen about a book for my Mom about healthy eating (SuperFoods Rx) and I reordered the Michael Jackson DVD "This Is It" as a late Hanukkah present from my parents.

Still, after such a nice day, I couldn't shake the blues...I had a foggy head...I couldn't quite focus on anything for any length of time...can't seem to remember names of meds, or tests, or anything really.  It is really starting to get to me!  I am not this scatterbrained!  I told my Mom I thought maybe it could be one of the medications that I am on and just upped the dosage of a week or so ago, but she thinks that it might be the thyroid that I am having tested on Wed. (which can cause the same symptoms).  *Sigh* Hard to take that seriously when EVERY test I have done in the past comes back NORMAL!

HOPE HOPE HOPE...all I can do now...say the words with me please, if anyone reads this...HOPE HOPE HOPE 

Endo Visit

Well apparently I should have had my thyroid and pituitary glands checked YEARS ago because my TSH (thyroid stimulating hormone) was high, indicating an underacting thyroid. I told him that my Free T4 was always normal, so I was told that meant that the abnormal TSH levels were just because of my birth control pills.  He said that was untrue. The pattern was consistent with autoimmune thyroid disease (like Hashimoto thyroiditis)...LOVELY! It would be an easy fix, actually...just one little pill a day and I would feel better...can you imagine?!?  All these years and just one freaking pill and NOTHING...NO SYMPTOMS!  He also said that if this test comes back normal then he doesn't know what is wrong with me and that I should just start lowering my prednisone slowly, and that he would help me along with my doctors here.  FAB...

HOPE HOPE HOPE these tests come back with something!

Lazy Day

Sunday was one of those days where I just laid on the couch, in my pj's and watched t.v., cuddled with my puppy, played on the computer, and did absolutely NOTHING!  It was the perfect way to spend the day after all the nonsense from the hospital the day before!  My body and mind needed the rest!!  I was happy to oblige...

HOPE HOPE HOPE the doctor goes well on Monday...was the one thought that kept running through my head...the one that will keep going through my head until I make it through the appointment...If anyone reads this, please do the same for me!!!

Hospital Hell...

I was admitted to Cleveland Clinic Weston on Friday, January 15, 2010 after going to see my neurologist. I was having such a severe reaction to the Levaquin liquid, even after my primary had me cut the dose from 20 ml to 5 ml (guess I am REALLY allergic to it!). I broke out in a rash, was having a SPLITTING headache, body aches, and thew up in my doctor's office. I could barely speak above a whisper...I was rather "dry", although by blood work, not dehydrated (I never am). My neurologist talked my Mom and I into going to the ER so I could be admitted to the hospital for IV medications, since it was obvious that I could no longer take the Levaquin and I was so incredibly sick that I needed intervention that I could not get at home. He was on call that weekend, so I felt confident that we could get things accomplished with regards to testing my autonomic symptoms while I was in the hospital and he could SEE what was going on while I was sick...boy was I WRONG!

My Mom and I got to the ER and waited in the waiting room for almost and hour before being called back...once back they immediately ran a chest x-ray and drew blood/put in the IV and did a urine sample...then I waited for 2 hours before I even saw a nurse or doctor...can you believe that?!? I only saw techs when I first went back...NO DOC!  I was SO nauseous and in such pain by the time the doctor came in I felt like I was going to pass out! He treated me so condescendingly!! He had the NERVE to ask me what I meant by "strider" when I was describing what brought me to the ER the last time and what happened in my primary's office on the 28th...umm..I live with this illness you shumck...I did tell him what it is, that it means I have laryngeal spasms and my vocal cords  close, and he said "I just wanted to make sure we were on the same page"..GRRRRR...I just grinned through the nausea and pain and irritation...my neurologist had called down to speak with him before I came down and this little putz had the nerve to say that he thought my neuro was "confused" (HA)...THIS joker was "CONFUSED", but he gave me zofran, pepcid IV, a bag of fluids because I was so dry, and toridal IV. Before I had the IV meds pushed I went to the restroom and by the time I got back to the bed the nurse came in, pushed the zofran too quickly, didn't flush the line right away, I got dizzy, flushed, then she flushed the line, I threw up, got dizzy, she called in the doctor, he DIDN'T take my pressure or pulse..UGH! BUT, that was the determining factor in keeping me in the hospital over-night...he was planning on sending me home after the fluids since my labs were "normal".

Well...The "Resident" and I will use that term lightly, came in to see me hours later. She came in and said they were going to "fix me up". My Mom and I laughed knowing this was untrue, and we were right. As I was telling her what was wrong with me, she started saying, "what brought you in here NOW"...that is when I knew she wanted me OUT as soon as possible! They were NOT going to figure this out, they just wanted to see if I had an infection, then ship my butt home! The doc either changed or OMITTED MOST of my medications that I have been on for YEARS...meds that are in their computer...meds like PREDNISONE and PERCOCET! Things you can't just STOP or you will DIE! INSANE! Then I was told I was going on the med/surgical floor, not telemetry, where my heart rate would be monitored...umm...isn't that what I am there for considering I am passing out 3-4 times a day?!? So they try to move me only to stick me in a room with SOMEONE ELSE...UMM...I HAVE A WEAKENED IMMUNE SYSTEM!!! I can't get over being sick, I have a low IGG level, I see YOUR hematologist!!! "Well, are you REFUSING to be on telemetry?" Oh, Did I mention that THIS conversation is between my Mom and the resident at 2 AM?? I was SOO tired I couldn't deal with it...all I wanted was to sleep. I still had the remnants of the headache, I was still nauseous, since the stupid resident wrote the zofran orders incorrectly...only wrote it for ORAL zofran to be given 4 mg every 8hrs...ummm...I came in with nausea, I have an IV and I take 8 mg at home every 6-8 hrs anyway you idiot! BREATH!

By 3am I was on the med/surgical floor in my own room because that was more important then being hooked up to monitors. The nurse did put a pulse/oxygen monitor on my finger, although it was not monitored by anyone by me/my Mom and if the nurse or doc happened to come in my room  LOL! I think my Mom and I got MAYBE 2 hrs of sleep because docs/nurses kept coming in and waking us up. The nurse's aide came in and did an orthostatic test on me and it was WAY off when I went from the laying down to standing up position...over 30 beats per min. difference...and I wasn't even dizzy...can you imagine how it drops when I pass out?!?  The same thing happened after I had a bowel movement, and I had the nurse there to witness it and I told my neurologist...he acknowledged the flare-up and said it was more-then-likely because of whatever infection I had and the fact that I had a reaction to the Levaquin. Hopefully I will get better now, he said...he wants me to go back to the Mayo Clinic in MN to see the GURU of Autonomic Dysfunction. He is writing me a letter of referral to get me there...my Mom will look into the money part on Monday. Mom was NOT happy when he said I should go home...with no more answers then when I came in...he DID come back in a short time later when he read in my chart that the CHIEF RESIDENT (that I NEVER MET) already ordered Cymbalta for me to take...He laughed about it, knowing I would not take this drug! He had me tell HIS resident WHY I would not take it (I had a HORRIBLE experience with Paxil...suicidal tendencies, stuttering, anxiety attack, total change in behavior). When the nurse came in to give me the drug, I denied it, of course!

The residents came in for rounds and when this one talked to me about Cymbalta I was as calm as possible, giving her NO reason to say "see you need it anyway" LOL! She told me there I SOME anecdotal evidence that it works in HIGH doses for dysautonomia in TEENS! I wanted to SCREAM at her!!!!  Dysautonomia in children in totally different then autonomic dysfunction in adults!!  The mechanism is DIFFERENT! Instead of feeling pain, like me, they feel NOTHING! Their nerves aren't on edge all the time, they are muted! GRRR! She, again was condescending!!  What IS IT with these PEOPLE!!!  She told me GOOGLE IT!!!!  Like I haven't spent the last 9 years of my life GOOGLING my condition!!!

BREATH BREATH!!

I went home 2 hrs later!!!

HOPE HOPE HOPE for a better appointment on Monday with the endo...HOPE HOPE HOPE I can get into Mayo!!!   

Levaquin is a Pain...

My second day on the Levaquin, you know, the one I paid out $200 of MY OWN money for, in the hopes that the insurance would pay me back, in the hopes that it would work...well it turns out, neither is going to be true...for one, my doctor's office didn't even TRY to get the prior authorization necessary to get me paid back (nice huh?!?), they decided to just call in a different antibiotic, one that would be guaranteed to rip my stomach to shreds, so now, the money is flushed down the potty! The second hope that is crushed is that I started experiencing HORRIBLE pain in my muscles after the second dose, a sure sign that I can't take the medicine again...that is one of the most frequent, and worst side effects of this medicine.  LOVELY! I also experienced, during night 1, insomnia, so I decided to take less of the medicine in the afternoon instead of at night...I also ended up having WICKED cramps and "D" all morning thanks to drinking some pedalyte, of all things, because I lost so much fluid weight during the night (I was up all night peeing...weird med, I tell ya!).

I have an appointment with my neurologist Friday afternoon...HOPEFULLY he will have a better suggestion for an antibiotic, test, SOMETHING! I can't keep this up...I am just getting sicker...I also have a call into my primary...who knows...once again HOPE HOPE HOPE...this time let's HOPE it's to stay out of the hospital!

Insurance Nonsense...

Yesterday I went back to the doctor to get a 3rd antibiotic, since the previous 2 (cipro and augmentin) failed to get rid of the bacterial infection that has been taking over my body in the last few months.  I have been getting sicker and sicker. Fevers, fainting, coughing, UTI-like feelings, you name it...I've been dealing with it, it seems...So my primary doctor decided prescribe either Levaquin Oral Solution (since my stomach doesn't handle pills very well) or hydoxycyclin (which only comes in a pill form and is known for CAUSING stomach problems...). Well I know I had taken Levaquin years ago, in pill form, but of course then I had REAL insurance, NOT medicaid, like I have now.  Medicaid does NOT cover Levaquin in ANY form, let alone the new liquid form. It will cover the hydroxycyclin though...of course it will...it is an old, cheap, toxic drug that will kill my stomach.  There is no guarentee that I will be able to take  the Levaquin liquid now...I could have a reaction to it since my system has  changed so much...but it is pretty darn sure that the other med will land me right in the hospital. So I pay, out of pocket for the Levaquin, while my doc's office fights it out with my insurance company for an override...IF the insurance company comes through, they have to do so within 7 days for me to be reimbursed by the pharmacy...or I am out $200...NICE...Thanks Medicaid!

Let's HOPE HOPE HOPE this works!!!!

Bronchitis Again?!?!

UGH!  I am sick! AGAIN!!  *Sigh* Passing out 3 times in a row...from just taking a shower...I felt like I was burning up.  My temperature was only 99.3, but for me, that is crazy high thanks to prednisone squelshing fevers. I feel like my body is going out of control...my right arm felt weak again...I felt dizzy at night, couldn't walk without help! Seriously don't know what's going on.  Going to the doctor tomorrow. I need a new antibiotic...can't take this anymore!

Will write again tomorrow...HOPE HOPE HOPE for a good antibiotic HOPE HOPE HOPE for some news...HOPE HOPE HOPE for something...ANYTHING...

Bad Dreams

This morning I was SO exhausted that I went back to sleep after breakfast in my parents' bed with my puppy, Shayna. I don't even know how long I had been sleeping...when I rest in their bed, with Shayna, I usually don't fall asleep...this time I did...I had such a horrible nightmare! I woke up in a panic attack! I was short of breath, scared, and not sure if what I had dreamt was real or not.  I remembered most of the dream. I dreamt that my Dad came home from work and I was still sleeping.  I could hear the car pull up, and my Dad come in the house.  I thought this was very strange.  I tried to get up, but I couldn't move...I kept trying to get out of bed...to at least turn over, but I couldn't...I could hear my parents talking over me, but I just couldn't move...my hand was over my mouth...I could barely breath...that's when I woke up.  I went to look outside to see if my Dad was home, of course he was NOT home...it was just a dream!

Later on that day, I was still exhausted for some reason, so I went to lay down again...and again, I had another nightmare...and another panic attack when I woke up! This time, I dreamt that I was at the kitchen table with my Mom and I told her I was tired and wanted to lay down, that I felt hot...she felt my head and said I was burning up, that I had a fever...I shouldn't have a fever because I just stopped antibiotics (true even not in my dream) so she was going to take me to the doctor, so she went to the bathroom to get ready. I headed toward her room to tell her I didn't feel well, but I started to feel numb on my right side...I saw Shayna and the gate we usually use to put her in the bedroom when we leave getting closer (like I am going to faint), I am getting scared...I try to call out, but I can't because I am going to faint...I start to fall into the gate and it falls on Shayna, trapping her under the gate, and I start freaking out, but I can't move because I am out of it from fainting! My Mom comes in and sees both me and Shayna on the floor. She moves the gate off of Shayna and I come to and tell her that my right side is completely numb, including my face, I can barely speak, I can't move my arm. I tell her I think I had a stroke.  She rolls her eyes and said "You didn't have a stroke". (In real life, I have NOT had a stroke and have gone tingly before, but never numb like that). I got mad and tried to show her my droopy face and tell her that I DID have a stroke! She told me we would go to the closest hospital and get trasfered to our usual hospital if it showed I did have a stroke and had to be admitted because we don't like the ER resident there anyway (true in real life).  My Dad came home and we told him what happened...he told us to go to the hospital and asked us why we waited so long!! I then woke up in a panic!!! 

Panic attacks nightmares happen every 3rd and 4th week of my cycle now...they are really freaking me out!!

I am SOOOO glad I am going to the endochronologist next week!!!!  HOPE HOPE HOPE he can help!!!

The Up After the Down

I woke up expecting to be as dizzy as I was the night before...I opened my eyes carefully, sat up even more carefully, so the room wouldn't sway around, like the rocky boat.  It didn't...not even a little.  I was very suprised! I got out of bed and was completely steady on my feet. I felt as "normal" as I could feel. I did my usual things for morning and went on the computer...since I live in South Florida, I was SHOCKED to see that my weather report said it was lightly "SNOWING"...since I am 29 and STILL have NEVER seen snow, I was SO excited that I threw on 2 jackets, gloves, my fuzzy pj pants still on, and my black boots over my fuzzy socks and ran outside...only to find out it was NOT snowing by me!!  LOL!  I was B-U-M-M-E-D, but not suprised...it turned out that it did lightly snow near the beach area, about 15 minutes east.

I was thrilled that it was so cold for the rest of the day!!  The high was 54 degrees!!  I LOVE the cold weather!!  My parents and I went to my FAVORITE restaurant for lunch. Mezes is a Greek restaurant in Pembroke Pines. The food is absolutely delicious...they give warm pita bread with hummus on the table when you walk in, but my Mom and I always order metzesalata (an eggplant spread) to go with the pita too as an appetizer. My parents shared a horitiki salad (it's like a salad without the lettus). I had a chicken souvlaki with extra tzatziki (my favorite yogurt dressing!).  I can't have anything with milk, but for some reason, I can have yogurt and parmegian cheese...thank goodness!  :)

Then we stopped at Target so I could pick up the book "Dear John" by Nickolas Sparks. My sister recommended it, and since it is now a best seller and becoming a major motion picture, I figured, why not? I have been ripping my way through books lately! I also got the Beatles Rock Band...It was rather expensive, but I rarely treat myself to anything, and my Dad and I do play it together, and my Mom enjoys listening to this kind of music SO much more then the other Rock Band music, so it was a "together" gift!  LOL!  It turned out to be WELL worth it!!  We played for QUITE a while!!!  It was REALLY FUN!!  There is so much to unlock!!  The easy level is pretty easy, but the medium level is KILLER!!  LOL! 

My Mom did bring up that because of the way my symptoms come and go...and the way I had the weakness over JUST my right side...and the way it is ALWAYS my right side...makes her think MS...it has made us question that diagnosis more then once. We have asked my neurologist that and he has flat out told us NO...I wonder though...it takes people so long to be diagnosed with that disease because of the remissions they go into...hmmm...

I go to bed thinking again...will tomorrow be another good day??? I hope so...HOPE HOPE HOPE!!!!

What a Dizzy/Weird Day

I woke up in morning TIRED...I don't even think tired explains how I felt...I think it was more like I hadn't slept in a month, yet I slept all night long. It was a strange feeling, considering how well I felt the whole day before! I had breakfast, took all my meds that I normally take, and went back to sleep, hoping that I would feel better when I woke up. I didn't.  I was still exhausted! I knew this was not a good sign for the rest of the day...

My Mom works one day a week, usually Saturday mornings because that's when the pediatric office isn't as crowded with people...she used to be a medical assistant, but CHOOSES not to work with patients anymore because they can get her sick, so she works in the back typing in charts into the computer 4 hrs a week. I think it's great that she can get out and do something for herself!!  It is also helpful that she brings some work home with her that I can help out with...it is nice to feel useful every now and then...but back to the here and now...so my Mom is at work, and I am stuck in my room because my Dad has been sneezing all day yesterday and this morning...we are HOPING it is just allergies because the weather is changing, but I certainly am NOT taking any chances!! I hate being stuck in my room because I can't cuddle with Shayna...she just lays in the hallway and stares at my room...it's kind of sad.  My Dad just says "she's fine, she's a dog...".  I know he just wants to stay on my Mom's computer and watch t.v. in the family room, and I don't blame him, so I stayed in my room and wrote my blog and played on facebook. I tried not to think about how completely exhausted I felt and what that would mean for the rest of the day...

Once my Mom came home I had already finished lunch and decided to take another nap...I just couldn't keep my eyes open anymore. I wasn't even laying down for 30 min when I got the weirdest stinging sensation over my right eye.  I thought I was going to get a migraine, but then it turned into a kind of numb feeling down the right side of my face for just a second.  That freaked the hell out me!! All of a sudden my right arm felt REALLY weird! You might be thinking "PANIC ATTACK", but I calmed myself down long enough to do the whole stroke test thing  LOL...I have been to enough neurologists to know how to do that! So I covered each eye, stuck my tongue out, smiled, wiggled my fingers, all that crap, and I could do each thing, so I knew I wasn't going to die or anything, but I still didn't feel right.  So I called my Mom and told her to come in my room because I didn't feel good.  She came in and I told her that my arm felt weird and what happened with my head.  She told me to calm down and just try to go back to sleep...maybe I pinched a nerve in my arm or something.  I didn't really buy that one...but I tried anyway because I was so tired. I laid there for a little while before trying to get up.  When I did, I realized I was too dizzy to move. I wasn't dizzy when sitting, only when standing...

When I tried to walk, it was like the floor was rocking like I was on a boat that was in 6-8 foot seas.  Everything was swaying back and forth.  It was making me nauseous.  It was like this the rest of the night. I passed out 2 times...once my throat closed and when I came to I had to use extra neurontin to open me up.  *Sigh*  I don't even know anymore...

I am just waiting...Just hoping...HOPE HOPE HOPE...Maybe tomorrow will be better???  I think this as I stumble into bed with my Mom's help...

Fabulous Day

I can't believe it, I woke up without a migraine! WAHOO! I just had to wait for my parents to come home from taking my grandparents food shopping, then I could go out shopping with my Mom to look for some new clothes.  Every week my parents, usually just my Dad because he helps carry the groceries in the house, take my grandparents food shopping. But because my Grandmother, Bumba, was just in the hospital with bronchitis, and is SO short of breath and shouldn't lift things, my Mom went to walk up and down the isles with her, and then my Dad went when they were almost done to help put the groceries away...a team effort!  I stayed home with Shayna and finished "Precious"...a VERY good, but emotionally draining book...I can't imagine how rough the movie would be...I don't think that is one I would want to see!

When my Mom came home from food shopping I ate lunch and then we headed to the mall to look for new jeans/purses/khaki pants.  I really need to replenish my wardrobe! After gaining and losing so much weight, my clothes are either WAY too big or too old and out of style or still too small...nothing seems to fit properly anymore.  We went to a few different stores and I tried on about a dozen pairs of jeans in size 4 and 6...the 6's were ALL too big and the 4's seemed either too small or just didn't fit quite right, like I was right in the middle of the two sizes.  I was ready to give up and go home! Then my Mom suggested we go upstairs in Macy's (the department store where we parked). I felt pretty sure I wasn't going to find anything and was rather worn out by this point, but agreed because they were having good sales.  I am SOOOO glad I agreed!! I found the CUTEST pair of Michael Kors jeans for 50% off!!!  They are a size 4...YEA!!! They fit perfectly and even have a little blingy zipper on the butt...hehehe...I have never had jeans like this before...rather "fancy"!! 

After that we came home because I was EXHAUSTED, but HAPPY! Watched my soap operas and relaxed for a bit in the afternoon before dinner and just hung out.  After dinner I managed to get on the Wii Fit for a little while...that felt quite good...especially seeing that I didn't gain any weight in 2 weeks! That had been my "goal"! I am within my target weight range! I really just need to tone up to look good in clothes again.  My tummy is flabby, but I think that is from having gained so much fluid from the Cushing's and then losing it so fast.  After the Wii Fit, I played Rock Band with my Dad...me on the guitar, my Dad on the drums.  We almost made it through the 14 song set, but flunked out on the last song..I think it's because my Mom got a frantic call from my grandparents about coming over to fix their nebulizers (the company came over and only set one up for them...my grandparents couldn't figure out how to do the other one). I was concerned and couldn't focus on the game.

Then we ended up watching some Food Network until bed.  All in all...not a bad day!  :)  I am glad tomorrow will get colder (Even though it's supposed to rain on Saturday, at least Sunday is supposed to be GORGEOUS!) Hopefully this trend of feeling better will continue...HOPE HOPE HOPE...

Another Day...Another Migraine...

I woke up in the morning, after a full night of sleep, still hoping that I would have another good day like the one before, only realize, the second my eyes popped open, that I had a migraine again. My eyes were blurry...the right side of head, just over my right eye (like always when I have a migraine) burned like hell!  The depression hit me like a ton of bricks first thing in the morning...it was just 6:30 am and already I was in pain and knew the rest of the day was going to suck. 

I can't even take medication to help the migraines when they breakthrough anymore...they all make me sick to my stomach or make me feel like I am having a heart attack or cause allergic reactions (lucky me!). I do drink diet coke (with caffiene) to ease the pain a little bit.  I managed to read half of "Precious" during the day...reading is pretty much the only thing I can do during migraine days.  The noise and lights of computers and televisions make the migraine pain SO MUCH WORSE!  I was happy that I was able to write the blog yesterday!  I am making an effort the keep that up no matter how bad things get...so some days the blog might only be a couple of lines...but I will explain that if it happens...

I did manage to get out to my psychologist appointment...and boy did I need that!  I have been seeing this therapist for 8 years now. She has experience dealing with people who have medical illnesses and need help coping with the fallout, so she definitely understands the depression that comes along with this crazy ride that is my life.  She has seen me through the ups and downs. This is definitely a DOWN time! I explained to her about the meltdown I had the other day that led to this blog. I told her about my feelings about dying...apparently they aren't that crazy afterall, seeing that I am constantly in survival mode all the time now. It is natural that I think about, and am coming to term with my own mortality.  Not something someone my age usually has to think about.  I, honestly, felt crazy for thinking about it...

I still wish I was able to DO something more productive, in the "traditional sense"...maybe one day...

By nighttime I felt a little better, but then felt worse again before bed, and ended up fainting...lovely...but at least my throat didn't close this time.  My migraine seemed to break after the faint.  My body is so weird!

I went to bed, once again HOPE HOPE HOPE....no migraine...I really need to go shopping for new clothes!

A Decent Day

So I decided yesterday, that each day, when I write this blog, it will be about the day before, as a reflection on the day before.  I am better when I process my thoughts then when I just kind of blurt them out.  I know, that is what you are supposed to do with a blog...kind of a "verbal vomit", as my Mom would say.  I just would be happier with my posts if I had a chance to think them through first.  So that is what I am going to do!

Yesterday was a pretty good day, physically, at least.  I had no migraine, for the first time in two days.  My back didn't hurt, no stomach ache, I didn't faint, and my bronchitis is FINALLY getting better.  I was able to go out into the GORGEOUS, brisk South Florida winter weather (it was a WONDERFUL 54 degrees) and SUNNY!!  I had a CT scan of my kidneys and abdomen.  I got the results at night from my Cleveland Clinic "mychart" (which is very convenient, since you don't have to wait for the doctor to call you with the results). Of course, they came back normal.  Nothing with me is ever easy, ever structurally wrong. No kidney stones, nothing wrong with my adrenal glands.  You may be wondering why this would be "easy".  It would be something a doctor could see...could fix.  Nope...not with me...with me it is "functional"...which means things just don't work right...they don't "function" properly. So no doctor can SEE it on a test.  Makes it damn hard to diagnose, that's for sure!

But all in all, it was a good day!  I came home from the test and played on the computer, and played with my dog, Shayna...she is the sweetest little 20 lb black cocker-spaniel/poodle mix around! She is like a therapy dog to me...she is my constant companion at home. She rarely leaves my lap, even when I am throwing up, or using a nebulizer treatment, she is on top of me. If I am passed out, she is right there with me.  She seems to sense where I am hurting and she curls up on that spot.  She is only 7 1/2 years old, but she was just diagnosed with grade II hemangiosarcoma of the spleen, and despite having her spleen removed, she wasn't given a good prognosis.  We are keeping her as comfortable as possible for as long we can.  She is a happy girl, still, and that's all we care about. 

Ok...enough sad stuff again...back to my day...I also played on the Wii RockBand2...I LOVE that game!! I am pretty good on the drums and guitar.  I am happy to say that I am improving...hehehe.  My singing voice however...lol...I don't think anyone really wants to hear that!  I enjoy singing...ALONE...hehehe...
After playing Rockband for a while I watched some tv and then went to bed around 10pm...not bad....I went to bed hoping for a repeat...I really needed another day like that!!  HOPE HOPE HOPE was the last thing I thought before I fell asleep...

First Post...

Ok...Here we go...I wish I could really know where to begin. I guess I will just start with how this blog came to be. I had a MAJOR meltdown yesterday...lol...that is putting it mildly! This was the culmination of about a year and a half of nonstop autonomic SICK. We (my parents and I...*we* come as a team) thought we had it figured out for a while too, which is why this meltdown really happened, because we DON'T have it figured out...more searching...more questions...more doctors...more medications...more tests. 

Some backstory...In 2000 I was up at college and there were some RAGING brush fires that were so bad I was rushed to the ER more times then I could count for "asthma attacks". The ER docs finally told my parents that the option was to either take me home or I would end up on a respirator, so home I went.  I ended up in the ICU in my hometown for 7 days, hospital for 10 days on HIGH dose IV steroids, antibiotics, and meds for anxiety and depression (the docs thought I was crazy because I was having issues with my heart rate/blood pressure/migraines/weight/pupils/dizziness/nausea/throat closing) they thought it was all due to anxiety about school and my boyfriend  LOL! Of course that was WRONG! I was in an autonomic failure that was responding to steroids...everytime they upped the steroids, the symptoms got better, when they lowered the steroids, the symptoms flared up. EVERYTIME! Finally, things in my body calmed down and I was able to get off the steroids and go back to my life at school...dumped the boyfriend (longer story ;-) ) but ended up coming back home when the brush fires kicked back up when I was there!



During my time teaching  I was having some really horrible symptoms that I had to hide from students. I was throwing up after everything I ate. So I would run to the bathroom before class started to vomit, and then make it back to the classroom before the students took their seats.  I had to make sure that I did not eat anything too heavy or mix a carbohydate with a protein or I would faint. I was also having "asthma attacks" whenever there was a brush fire around (which was often and right near the school since it is near the sawgrass).  I was on prednisone often, so I was either swollen, or lowering the prednisone which meant I was crippled in pain.  My hands and feet would literally CURL while I was teaching. I would turn beat red and sweat while I was walking up and down the isles of the classroom making sure the students were doing their work and staying on task.  *These were middle school, special needs students...they HAD to be kept on task...they were the best kids though!!!  It was during one of my breaks that I searched on line and found a Dr. at the University of Miami.  He led me to the Mayo Clinic which is where I was diagnosed with Autonomic Dysfunction (AD).

Being diagnosed with AD at this point means very little.  It is just a group of symptoms that has a name attached.  Doctors are trying to treat the symptoms, but have yet to treat the underlying illness, the nerve.  I thought, at one point, we found a way to treat my nerve. I thought we found the right combination of medications. I really thought we were on the right path to get me OFF PREDNISONE! OH, I never did tell the part where I started taking that horrible drug full time.  Back in 2005, the doctor at UM decided that with the diagnosis of AD he could do nothing, but we did know that my "asthma like" symptoms got better with prednisone (of course) and by coincidence found that my gastric symptoms, and fainting seemed to get better when prednisone was added as well, so that doctor told me to STAY ON prednisone at a low dose all the time...for my "quality of life". I went on 10 mg of prednisone full time in Feb. 2005.  That was quickly raised thanks to an infection...it has been raised and lowered too many times to count since then. 

The addition of "steroid-sparing drugs" was added a year after. This was a very difficult descision for me! It is taking chemo when you don't have cancer, only you get all the nasty side effects anyway.  It was misery for a month, without knowing if it was going to work, or if it was going to kill me. It worked, for a while anyway. I was able to successfully lower my prednisone to a wonderfully healthy 7 mg and stay there for a year before the medication stopped working.  I then had to get off that steroid-sparing drug and try another one...which failed...and another one...fail...and another...fail...and another...fail...Each failure brought my prednisone dose higher and higher...I was up to 80 mg. That is WAY too high for ANYONE! Let alone someone MY size (I am 4'11 and NORMALLY weigh 100 lbs)...not on that dose...I ballooned up to 138 lbs only able to keep it that low because of the gastric problems.

Now here we are...I am on a new steroid-sparing drug, down to 15 mg of prednisone, BUT that is not the reason I am down to 15 mg...the real reason is the NERVE medications we have found thanks to my neurologist and rheumatologist. Mestinon (which replaces a chemical released by the vegus nerve) and Neurontin (which calms the nerves down) are my biggest weapons right now. They open my throat up when it closes....but I am having just as many issues as ever since I lowered to 15 mg of prednisone...and that worries me.  I see a NEW doctor, the HEAD endochronologist at Cleveland Clinic from Cleveland in FL (he comes down here once a month) in a couple of weeks...hopefully he will have some answers.
Thank you to anyone who reads this!!!  I am sure the posts that follow will NOT be this long!!!