Bordering Desperation

I just realized today that it has been almost two years since I have been in a relationship.  Two years since I have had sex...been intimate with anyone.  My life has been consumed with illness, has been in the dreaded "survival mode" for two whole years.  This is not acceptable.  I have been on Match.com for over 3 months now to no avail.  I have met a couple of guys, but they are real jerks.  Their attitudes towards women, and to be honest, just in general, are completely negative.  I cannot deal with that kind of stress in my life.  I need someone who will be a shining light in my life.  Someone who will lift my spirits when I am sick and help me to enjoy my life when I am well.  I need calm energy (with a kick)...and of course, the attraction needs to be there as well! 

I hope I don't ask too much.  For now, I will go back to HOPE HOPE HOPE that I find what I am looking for...

New Diagnosis

I can't believe this has finally happened.  I had all but given up on the possibility of a real diagnosis, of real answers.  I came to accept my life in the last few weeks.  I began writing my book again, determined not to let my illness, my lack of evidence, my irritation at doctors, keep me from telling my important story to others...hopefully to inspire them to never give up on themselves, as my family did not give up on me.

Then, after almost a week had past from my last round of blood work to test me for antibodies linked to autoimmune diseases, my Mom came back from HER appointment with OUR rheumatologist with tears in her eyes.  First I asked about her knee, convinced he told her some news about that she did not want to hear.  It was nothing about her...  She then told me that my blood work came back.  I automatically thought that she was upset because all my tests we negative once again.  I was wrong.  She said "you have lupus". 

I was shocked beyond belief and instantly flooded with an incredible amount of relief.  Not exactly the emotion most people feel when receiving such a diagnosis, but I have been misdiagnosed and basically called anxious and a little crazy for the past 10 years...so this was proof beyond a shadow of a doubt...in black and white.  The numbers and pattern were there.  It is definitely Systemic Lupus. 

It all makes sense.  Every symptom, every treatment that worked, and every treatment that didn't...it all makes sense.  The puzzle pieces have finally fit together and it wasn't nearly as complicated as the doctors once thought.  Now it is my chance to give what I have always wanted...HOPE to those who are out there still going through this nightmare of getting diagnosed!

Frustration...

I do not understand why some men just don't get it.  They seem completely oblivious to what women are feeling, thinking, needing, wanting.  It really is driving me up a wall.  This doesn't even relate directly to me.  My Mom is getting the brunt of it, and I am seeing the result, first hand.  She gets upset by his "ignoring her" and I try to smooth things over by quietly telling him what is going on.  She usually knows that I clued him in, making her more annoyed about why he couldn't figure things out on his own...but she should realize by now, 30 some odd years later, that's not going to happen.  He needs guidance...he needs to be TOLD what she needs and wants...Sigh...I really hope it's not like this with ALL men!!  Is it?!?

Remembering

Today is not a post about me.  Today is a post about remembering the life of my beloved cousin Daniel Eric Pemsler...Danny.  He would have been 28 years old today, almost 2 years younger then me, but in so many ways, a better human being.  He was funny and smart and so incredibly loved by everyone he met, as evidenced by his memorial service where it was standing room only.  His friends were a diverse crowd because he did not hold prejudice.  He was simply nice to everyone, it seems.  I am sad to say that I did not know him better. 

When we were children, we were inseparable during family gatherings. As we got older, though, we seemed to have less in common.  He was more of the "jock" and I was more of the "nerd" (I am not ashamed to say now).  I am ashamed to say, that I did not spend more time trying to break through the wall of shyness we built up and talk to him.  He was so quiet, except with my grandfather.  He would speak to him and best of all, would listen.  He would not say anything when my grandfather would tell the same stories to him each time they would see each other (about how football players should hire sumo-wrestlers), he would just nod his head in agreement.  These visits would make my grandfather's day. 

We were all thrilled when Danny graduated college and found a job that he liked and a girlfriend that he seemed to love.  He was even planning on bringing her down for a visit to meet the whole family...something he had never done before.  Then we got the dreaded phone call from my Uncle...a call I do not wish to relive, so I won't.

What I do wish to talk about are the dreams...Danny sometimes comes to me in my dreams, telling me that things will be alright, or that he is ok.  He is always reassuring.  During the dreams I am always happy to see him!  He seems so incredibly real, so very alive!  That is how I choose to remember him.

Eating Woes

One would think that eating wouldn't bring such misery.  Eating should be pleasure.  For me, more often then not, eating equates to planning and depriving myself of the foods I truly love.  I have had to modify my eating habits more times then I count due to my ever changing illness.  Most recently I have had to eliminate all dairy from my life, including yogurt, which I was able to eat up until my last drop on prednisone.  I do not understand my system at all.  My diet has become increasingly limited.  The only thing that remains constant is my palat.  I love sweets...I always have, and have a feeling I always will.  I am not really a lover of salty or spicy foods.  I do enjoy the occasional kalamata olive, but that is really about it...I do not miss too many other high salt foods most other times....until today.  I just ate lunch.  I had a turkey sandwhich (about 2 ounces of low sodium turkey with 1 slice of challah and some homemade cranberry sauce *only because we were out of hummus* and then I did the REALLY odd thing and had a 100 calorie pack of Cape Cod potato chips). Now, honestly, I feel gross.  Not because I ate too much.  Not because I had too many calories or fat, obviously...but because I had too much SALT!  My pressure is fine...I checked it.  It is only 100/70, which is low on a "normal" person.  My pulse is normal too...90.  The salt did nothing to me, but make me feel as if I over indulged.  I don't even know why I craved such a thing.  I don't normally even want chips.  Today, I wanted them...I mean, I REALLY wanted them...and now, I feel guilty for eating them...ugh!

Changing Course

Last night, after thinking about what I had read so far in the book, "Eat, Pray, Love" by Elizabeth Gilbert, I decided to take stock in my life.  I am still searching for contentment... still searching for something that will give me pleasure. I am almost thirty years old and I keep coming back to that thought...The thought that I have only been in survival mode for the past five years haunts me.  Well, I am officially changing course!  I hereby give myself permission to move in a different direction, with or without a diagnosis, with or without a set treatment plan and even though I will get sick from time to time,  I know I will prevail.  I will make something of my life.  No more hoping it will happen...KNOWING it will!  I will finally start my life.

Amazed

I had originally heard about this book from my therapist and then from aunt, who both recommend books to me all the time.  They both know my taste in books and share from the heart.  My aunt and I have very similar taste in books pretty frequently...particuraly with books of the spiritual sort.  Then my therapist suggested it, and I thought about it, but just wasn't in the right frame of mind.  This must have been about a year or so ago.  I know that at the time I was going through the worst of illness and needing more of an escape from reality then deep and meaningful thoughts about how to set my soul free through traveling the world (which I would LOVE to do). 

Now that the movie is about to come out, and I had just finished my latest books on my kindle, which were trashy romance novels (fun fluff, but mind mush), I was ready to read something of substance.  I decided to download the free sample to see if I would like it before I bought the whole book (one of the best things about kindle).  My sister was down for a few days and I told her about the book and she said that she could not get through it, it was too dry for her.  One of my girlfriends said the same thing.  I became a bit skeptical about whether or not I would enjoy it...but my taste in books does vary quite a bit from my sister and that particular friend, so I decided to go ahead with the free trial, I mean, I had nothing to lose there.

Boy am I glad that I did!  I absolutely love this book!  I can't imagine why anyone would think this book is dry or dull.  The way the author depicts her journey through her soul is both enlightened and yet not overbearing.  She does not try to shove anything down the reader's throat, she is mearly sharing her experiences with humor and humility.  She was not perfect...far from it, and she acknowledges that fully.  The way that she was able to pick up her life that was in complete and utter ruins and put it back together is awe inspiring.  I HOPE HOPE HOPE that when I am well enough I have the courage and strength of conviction to do just that!!!

All Me...

This post I could see ruffling a few feathers.  I was thinking about it today as  I was saw all posts on facebook that I see referring to how G-d or Jesus gets my friends through rough times, or through the day, or even through a simple plane ride.  I do not agree with my friends on this...I never agreed with  the song "Jesus Take the Wheel"...I am more of the thinking that people should make their own destiny...take control of their lives...why leave your life up to someone/something beyond you?  Maybe that makes me a control freak, goodness knows I have been called that before!  But I think that has been what gets me through this illness...I don't believe it is G-d or some higher power getting me through my days...it is all me and my family when I can't manage...it hasn't been easy, and maybe it would be easier if I put my faith in something bigger then myself and just threw my hands up and let that being take over, letting all that happened next not be my fault "it's all G-d's plan"...that is not my style...what happens is ALL ME...my life and my health and my happiness are my responsibility and I think that makes a stronger and happier person for it, because I can own all the good and bad that happens...I HOPE HOPE HOPE my choices will continue to make me stronger and healthier and happier as I enter my 30's...

Not Autonomic Dysfunction??

Now my doctors are questioning my diagnosing AGAIN!!  I can't even tell you how disappointed I was to hear this yesterday!  I don't know what to think anymore.  My doctor said he set up a conference with a group of doctors (that was to meet last night) to discuss my case and assign an "internist" to oversee my case. This new doctor will be starting at the very beginning of my history.  The doctor yesterday said that he will not let anyone give up on me...I HOPE HOPE HOPE he is not one of the many that said that before things got too confusing and gave up anyway...I know he believes me...I know he thinks they can "read between the lines" (his words)...I HOPE HOPE HOPE I can have his faith in this new doctor (whomever he/she turns out to be)...

A New Moon Day

Today was one of those days where it was rainy all day...my Mom and I finally had nothing to do.  After all weekend of stressing out over Passover and family coming over for lunch and whether or not I was going to be well enough, all the stress was GONE!  We were able to relax and enjoy ourselves!  What better way then with a little OCD (Obsessive Cullen Disorder)?!?  Actually, for me it's more it's more like OJD because I am definitely into the Team Jacob thing...haha...even though I feel a little like a cougar saying that (hey, I am almost 30 *groan*, and he is only 18...). 

To me, this day was right on the money...relaxing and feeling well enough to enjoy a great movie!  I HOPE HOPE HOPE tomorrow and Wednesday's doctor's appointments go well to keep up this trend...

Tired and Confused

I thought my cycle was done...I thought I would start feeling better...not so much, apparently.  Yesterday was awful...I had a low grade fever, stomach pains, nausea, headache that turned into a migraine...the works. This morning, my period RESTARTED!  WTF?!?  Seriously...

I stopped eating dairy all together yesterday because I realized that may very possibly be aggravating my stomach issues.  Sure enough, no dairy today, and my nausea and cramps have been limited...even with the migraine.  I have fainted twice though...but that is thanks to the damn migraine.  I made an appointment with my neurologist for next week, the day after I see the uro/gyn.  I NEED answers...I HOPE HOPE HOPE I get them...I NEED to move on with my life...30 is staring me in the face...

My First Review...

I never thought I would be reviewing anything on this blog...but this seemed like a good idea.  This actually does go with my theme of life with autonomic dysfunction as well because I use this all time...especially when I am sick!  The backround is so much better then most books...my eyes do not get as tired reading from the kindle as they do reading most paperback books.  The books are also less expensive buying from amazon.com then from the bookstores.  I only have to charge the kindle every couple of days, and only for a couple of hours.  The case I keep it in is light weight and does not interfere with my reading at all.  I have gotten used to "turning the pages" with a click of the button, instead of turning the page.  I honestly enjoy using the kindle more then I enjoyed reading paper books.  I have read more books on the kindle then I ever imagined possible (and for a lot less money) !!  I could not be happier!!

I HOPE HOPE HOPE I will inspire more people out there to read!!!

Healthcare

I don't normally post about politics...but today I just saw something on my facebook page, from one of my "friends" that just irritated me to no end.  She wrote that she is "disgusted" by the thought of "socialized healthcare".  This post makes me incredibly frustrated!  I have a really hard time with people of my generation believing that ALL people don't deserve health care.  Who is she to decide that there are people out there that are not good enough to see a doctor, to pay for tests, for medications, just because they can't afford insurance...or maybe it's because they have a "pre-existing condition" that prevents them from obtaining it another way.  Not all people who don't have insurance now are "deadbeats who can't get jobs" as the way most people out there are depicting it now.  There have been so many reports on t.v. from people who NEED insurance...people who are dying without medications...people this legislation would help.  I HOPE HOPE HOPE the American people will open their eyes and stop this partisan-bashing and look to the good of the nation!!!

Rock and a Hard Place

Last night I fainted after dinner and today I got a migraine and fainted after some diet Coke...all thanks to my period.  I still have the damn rash on my chest...I am exhausted.  I can't wait for this nightmare of a cycle to be OVER so I can return to some sort of "normal" for me.  I know it is because of the hormones and after doing a little research on line (because you know my doctors aren't any help) I know it's also because of adrenal fatigue of some sort.  Well that should not surprise me any.  My adrenals do not work, and haven't in a very long time thanks to all the prednisone I have been on.  Unfortunately I cannot lower my dose because of all the upcoming events...family coming in for Passover, then my sister and James coming into town for a few days, then my dental visit (which will take a few WEEKS to recover from...).  I won't be able to lower for almost two months...

Two more cycles like this...I HOPE HOPE HOPE I can make it through ok...

The Joys...

Oh the joys of womanhood...for the first time in four years I got my period on Monday. It has been two months to the day since I stopped the birth control pill, and two months since I have had any autonomic symptoms.  Thankfully those symptoms have not returned.  What did start returning last week (which I did not understand at the time) were fevers, nightmares, diahrrea, and the rash on my chest.  Monday, I started with the spotting, and Tuesday it turned into mild cramping and staining...today is severe fatigue, nausea, lightheaded, and of course, cramps.  I definitely remember why I stayed on the pill since I was 14 years old!!    I just HOPE HOPE HOPE it doesn't last too long!!! 

Negativity

I had my first date in year and half...I met him from an on line dating service and spoke to him on the phone for a week or so before we met in person.  Today, I met him at a great Italian restaurant and then we were going to walk around the mall a bit (the restaurant was at the mall...so we didn't have to drive anywhere else).  We met for a late lunch...the food was delicious, but he found a way to be negative about the restaurant when I said that he would now have a great new place to go when he wanted good Italian food. He also told me stories where he was rude to friends and strangers...I can't understand people like that.  I try to be nice and positive and happy...why waste so much energy being mean and hurtful to people? Why be negative all the time? Why not be happy with what you have?

I dated someone like this before...never happy with what he had...and therefore, never happy with me...I always had to be better...I had to dress better, want to do something better with my life, exercise more, etc...I cannot be with someone like that again!  It was too hurtful! 

I HOPE HOPE HOPE I will find someone who will make me as happy as I can make them...

Thank Goodness...

Ok...I had my allergy test today for the lidocaine without preservatives and I did NOT have a reaction! WAHOO!  I was pretty sure I would faint or my throat would close...but neither occurred, which means I can have the dental work completed with a lot less worry.  I set up my appointment with the dentist to go over my results of the allergy test and how that impacts my treatment plan.  I really HOPE HOPE HOPE that lowers the cost of my procedure!!

THE BILL...

Yesterday I went back to the dental office to meet the anesthesiologist that will be doing my procedure (or so I thought).  He is the head of the practice and very nice...as he started asking me questions about my illness he called in ANOTHER doctor/dentist in the practice to listen to my case and work with him while doing my procedure as well...umm...that gets rather pricey, having two dentists!!  They also want me to have skin testing done to check if I am truly allergic to local anesthetics (both without preservatives). This should be SUPER FUN...ugh!  The final bill should be around $5000...insane!!!  I will only be sedated, not fully unconscious...but I will have two anesthesiologist/dentist/doctors in the room at all times to do three fillings/a scaling/root planing/and a graft on my bottom teeth (thanks prednisone for all you have done to my mouth).

I HOPE HOPE HOPE I can use at least ONE of the local anesthesia meds I am being tested for!!!

Dating Again

Oh my..I am trying to date again after almost a year and half of being single. Talk about SCARY!  I put up a profile on match.com and have already had quite a few bites, which is flattering.  I am talking on the phone with two guys, who both want to meet, and who both know a BIT about my illness.  They know I haven't worked, and that I live at home with my parents and don't own my own car.  So far, so good.  I am terrified to reveal more.  I know I don't have to yet.  TMI is not good for anyone before the first date. 

I HOPE HOPE HOPE something works out...and I HOPE HOPE HOPE my Mom can start to let me go...

Religion

Typically I don't comment on my friends' posts on facebook about their religious beliefs.  This time I felt I should. My friend wrote that he believed that religion was "silly" and that it led to feelings of guilt. Part of that I believe...it can lead to feelings of guilt, if taught in such a way that promotes hate and intolerance...but I had to comment about the part of religion being "silly".  I am not religious, but I do believe that people should be able to feel comfortable in whatever higher power they believe. He of course wrote that he loved how open minded I am, but he feels that religion leads to war and pain. I can't disagree with that...but I have seen it do quite a bit of good in the lives of my sick friends.  They need something to cling to, even if it's something they can't see...I HOPE HOPE HOPE people will learn tolerance, and SOON...

Money

I just spent so much money...The dentist will cost me over $2000...and I just spent $300 on a glorified vibrator (ok, it's a vaginal stimulator for pelvic floor dysfunction, but it goes up "there" and buzzes, so I can only imagine...).  I am SO not happy about all this!!  I have freaking insurance, and it covers NOTHING...not one penny of what I need done for my teeth or this stim machine.  This is a lot of money!

I HOPE HOPE HOPE nothing else comes up!!

Dentist...

Tomorrow I will start my search for a dentist that will perform the work I need done: deep cleaning and fillings with IV sedation using as LITTLE numbing as possible.  The allergist I went to today said that even if he did the skin tests on me, it wouldn't show the AUTONOMIC reactions I have from the lidocaine and benzocaine...and therefore probably wouldn't show any other form of reaction from novicaine reaction either. I just have to HOPE HOPE HOPE that while I am sedated my thoat does not close...

Fun Weekend

We went up to Orlando to surprise my nephew for his 5th birthday party and then spend the next day with my sister and family at Epcot.  It all went off without a hitch!  I actually was able to walk around the whole park of Epcot without needing a wheelchair!!  That is a huge achievment for me!  I was really happy with how far I have come...I was exhausted by the time we came home last night around 10 pm, but it was WELL worth it!!  We even got to spend the night at the Dolphin hotel...that was an AMAZING experience!!!  I am so glad we were able to spend the whole weekend together!

HOPE HOPE HOPE we can do something together again soon!

Hope and Fear

Every day I end the blog with a line about hope. I mean every line I write...but I also fear that the hopeful statement won't come true...today's hope is laced with more fear then most.  I am hoping that the weekend will go smoothly.  My parents and I are going to be surprising my sister and James at his birthday party and then staying for the next day's trip to Epcot...it was a last minute decision, of course, based on so many factor's, like how JB was feeling and how I was feeling.  My sister's boyfriend is helping us keep this all a secret for everyone so we can surprise them...it should be a lot of fun.  SHOULD being the operative word...I always feel like the other shoe is going drop...even though I am hopeful...sigh...

HOPE HOPE HOPE...if anyone reads this, please hope with me!! 

Bad Day Turned GREAT!

Well, my day started with having a horrible urodynamic test, which is basically a barbaric test, but is extremely useful in giving information about how the bladder functions.  It showed that mine does not function properly...finally, a test to prove that things do not work right because of the autonomic dysfunction (kind of like the small bowel dysmotility...my stomach works too quickly, but small bowel is too slow, then large intestine tends to kick into high gear at times causing spasms..) Well, my bladder seems to kick things into high gear as also, causing spasms in my urethra when it is supposed to relax. I also have some pelvic floor dysfunction, but instead of being too relaxed, mine spasms too much (I know, backwards). The doctor will call me next week with a plan and to fully discuss the results.

That was the BAD part of the day...the GREAT part of my day came when my Mom decided to bring up going up to surprise my sister and James for the weekend...YEA!  James is FINALLY not sick, and since it is his birthday, and they are going to have his party on Saturday, and then go to Epcot on Sunday, we thought this was the perfect opportunity!  I emailed Dave to let him in on the surprise...I hope he gets the email in time and calls or emails me back!!  We don't even know where the party is so we can show up...oops...

I HOPE HOPE HOPE we can all stay well the whole time to enjoy it!!!

Terrible Horrible No Good Very Bad Day

Yesterday was one of those days you just want to END!  I went to the dentist in the afternoon and he told me that I had peritonitis on my bottom gums (which I suspected) and that I would need a deep cleaning and scaling, plus I had two cavities, one of which might need a root canal...none of which is covered by my insurance so it will cost a FORTUNE!  Also, it will all require numbing...which, at this point I am allergic to...so I have to go to an allergist to see whether I am allergic to a preservative in the shot (so I can get a preservative free one) or whether I have to pay for a hospital stay and get general anesthesia (I REALLY hope NOT!!). 

I also got a call back from my rheumatologist.  He told me that lymphocyte count was down to 648 (my last one was 900)...of course I do have a cold, and this could be because of a virus, but he was concerned, so I am too. He is still waiting for all my other tests to come back, especially considering I am running fevers every day.

I see the uro/gyn today...HOPE HOPE HOPE for some good news...I don't know if I can deal with anymore bad... 

Teeth...and Freaking Out

Ok...so my gums look a mess!  There are deep pockets below my bottom teeth and the top gums are receding all of sudden.  I made an appointment with a dentist tomorrow to have it looked at and see what they can do.  I looked on the web and saw that it could just require a deep cleaning and some medication to heal the gums...I really hope that is all!  I am scared though...my body has NOT been handing stress of different medications or different ANYTHING for that matter.  I go into autonomic shock very easily.  I faint, my throat closes, my whole body burns and stings, I get fevers and infections and sores.  It's like I have an autoimmune disease that is just one big flare up right now, probably from lowering my prednisone and catching a cold at the same time, plus stopping my birth control pill a few weeks ago (well a month ago now, I guess). 

I HOPE HOPE HOPE tomorrow goes well...he will just be looking and prescribing an antibiotic if he is going to do work..HOPE HOPE HOPE my teeth will be ok!!!

Autonomic Allergic Reaction

How weird is my body...for the second time, when we ate at an Italian restaurant in Weston, I ate pasta basillica (pasta with basil tomato sauce) and I had an allergic-type autonomic reaction.  The skin on my chest started to itch in the restaurant right after the meal before we left and my Mom asked if I was alright, because she said my eyes started look glassy.  I then started to pass out, for the first time in weeks.  My Mom pulled into a parking lot and waited until I came out of it and then I look 3 benedryl because I was so incredibly stingy.  Once we got home I also took a little bit more neurontin because I was still feeling off....my throat was starting to spasm.  The neurontin helped right away..the benedryl helped the rest of the way, although now my head feels all swimmy. 

I HOPE HOPE HOPE I can avoid more reactions...wish I knew why my allergies all have autonomic reactions attached to them...

Cold...

I have a cold...ugh...my nephew got me sick.  No one is surprised, least of all me.  All I have to do is be around someone that is sick and I catch it. and he was in the house, touching the furniture, hugging me, not that I am complaining...mind you!  I HOPE HOPE HOPE this doesn't undermine my recovery from lowering my prednisone dose to 12.5...I HOPE HOPE HOPE my autonomic symptoms don't come flaring back up...I HOPE HOPE HOPE this cold goes away quickly!

B-12

So why wouldn't my hematologist tell me that my B-12 was low back in November??  That is my question! My rheumatologist told me today when I saw him since he got a copy of the report, and this is the first visit I had with him since then.  This could DEFINITELY explain many of my symptoms that have not gotten better with the exclusion of my birth control pill.  Something so simple...something so easily fixed...something overlooked because it wasn't DRAMATICALLY low, but low enough.  I will start the supplement tomorrow...on a dose lower then what is normally given because my system is so sensative.  We will recheck the level in a month to make sure it is going up.  Thankfully I have a doctor that cares!!

HOPE HOPE HOPE this supplement works and does not make me sick!!!

Adults Living at Home

Adults living at home with their parents NEED to have boundaries...I wish my parents understoond that.  I wish my Mom understood that.  I think that is hard for parents...they seem to think of their adult children as just children, still needing to be told what to do, what not to do...my Mom still tries to tell me what to spend MY money on, clothes I should wear, when I feel I will be able to drive (like I would EVER endanger anyone...).  It seems to always be an arguement when I am well...she says she wants to be healthy, to be independent, but then when I start to assert my independence, she asserts her parental control...I AM 30!!  I deserve the respect of adult.  I have NEVER had trouble with money, I have NEVER endangered anyone, or done anything reckless...this needs to stop.  I need to set some boundaries.  I am getting healthier...I HOPE HOPE HOPE this gets easier!!

Waiting...

It's day 3 of my drop to 12.5 of prednisone and I am waiting for the side effects to kick in and hit me like a ton of bricks like it usually does.  I don't know what to think at this point...every other time I have lowered my dose of prednisone, even by the smallest amount, I have been hit with AWFUL side effects like migraine headaches, horrible muscle spasms, vomiting, throat spasms, etc...this time, NOTHING.  I am HOPE HOPE HOPING...but don't know what to think at the same time...kind of waiting for the other shoe to drop...HOPE HOPE HOPE is all I can do...

Mayo Clinic

The way the healthcare industry works, this should not come as a surprise to me...the Mayo Clinic in MN has denied me care based on the fact that I have no insurance.  Since I cannot pay, I cannot be treated.  Not that I do not have NEED to be treated...but that I have no MONEY.  This is why there are so many bills in the house and congress trying to be passed...this why the democrats and the republicans fight like they do over who has the right to control people's lives when it comes to health care...well I can tell you this much, if this keeps up, people are not going to get the health care they need, and that just isn't right.  Too many people are getting left out in the cold.  Too many people are getting hurt by this CURRENT situation...WE NEED CHANGE!!!

HOPE HOPE HOPE our president can get things CHANGED!!!

Full Weekend...Now Dropping

We had a great weekend with everyone here!  It was great that my sister and crew were staying a hotel, though, because JB ended up getting a cold...which, honestly scares me. I did not kiss all over him, and I wash my hands quite often...but still, having him in the house, with me lowering my prednisone now, is not great timing...but when are things ever good timing?!?  The weekend was still wonderful!!  The kids were GREAT!!!  They get along incredibly well...Belle is a sweet girl, a bit dramatic, but she is 10, so that makes sense...I can relate to being like that at her age.  She enjoys playing with JB and doesn't mind sharing games and even stopped playing the Wii so JB would go outside with my Mom and do sidewalk chalk.  They all ended up having a wonderful time because the chalk was 3-D (VERY cool!)  The lunch on Sunday was really good, too!  The kids were very patient during the extremely long lunch time.  I was surprised by how smoothly everything went this weekend!

Today everyone went home in the morning after spending some  time at our house.  It is always sad to see them leave...They probably won't be back for a month or 2. 

I did lower my prednisone this morning..down to 12.5 mg from 15 mg of prednisone.  I HOPE HOPE HOPE this goes more smoothly then the last drop!!!

Great Day!

Yesterday was a great day!  I didn't feel fantastic at first, because of my stomach, but I managed to get it under control with zofran and levsin sublingual tablets.  My sister and crew came in around 11 am and we went to lunch at Too Jays where I had just hummus (which was more then enough), but it looked like I was eating normally which didn't bother anyone.  I looked normal, I looked good...the first thing my sister's boyfriend said was that I looked good...the last time he saw me I was about 6 or 7 lbs heavier and SICK!  At Too Jays the waiters sang Happy Birthday to my nephew and that just made his whole day!!  He was such a good boy at the restaurant, even though it took a long time to get seated, and an even longer time to get our food.  Then the girls went shopping and the boys went home to play rock band on the Wii.  We all had a great time and it was a perfect way to break up the afternoon!

By the time the girls came home from shopping (which was a GREAT success because "Belle" got a new outfit with shoes and "MR" got a sweater, plus she bought "David" a pair of fuzzy pj pants) we were ready to pick up my grandparents for dinner and the Valentine's Day/birthday party for "JB".  While we were waiting to eat, the kids were playing Wii, Belle was playing the Wii Fit Plus and I was sitting on the couch watching when JB came up and cuddled next to me on the couch, laying his head on me and I wrapped my arms around him and just hugged onto him.  He hasn't done this in a while...I think because I was sick, and he had to be careful around me...I MELTED...I absolutely love my nephew to pieces and was so happy that he felt comfortable with me again!!

By dinner time we were all hungry and my Mom had outdone herself again!  There was SO much food and it was all delicious! JB was very excited about his chewbacka cake and it looked GREAT...I bet it tasted great too..but I was good and did not even take a bite, because I was so worried about my stomach...after dinner we opened presents, and the kids and my sister were completely surprised by their gifts (tickets to Disney for the family for 4 days/4 parks) and of course all the other little presents we got them!  The looks on their faces were priceless!! 

By the time they left, we were all exhausted, but completely HAPPY!  HOPE HOPE HOPE this feeling can last forever!!!

Busy Weekend Ahead

This is the first weekend I can remember that my sister, and her "crew" (which includes my WONDERFUL nephew, my sister's boyfriend,  and his daughter) are coming down where I feel pretty darn good.  I mean, I still have my stomach issues, but they are no big deal and don't stop me from doing anything fun.  I just have to make sure I eat lightly and have some zofran with me, just in case I get nauseous.  We are planning on celebrating my nephew's 5th birthday and Valentine's Day...FUN!  I think I wrote about all this in another blog...so I will spare you the details again...especially because I'm sure I will be writing about it again after the fact! 

For now...I am just happy...HOPE HOPE HOPE everything goes well!!

Good idea

During the conference call for the Lupus Foundation, we were discussing the possibility of what kind of group I would start to run again, since the Dania group was canceled.  Well, I told them I was still planning on working with Marisa on line with the different support groups, especially since there can be more then one meeting per month, and so many people can be on the site at one time.  One topic that came up as filling an important need would be adolescent...and since I am certified as an ESE teacher, specializing in middle school/adolescent age, it seemed like a perfect fit for me to be the facilitator for that meeting.

I HOPE HOPE HOPE this works out...

The Nonconfrontational Approach

Yesterday I treated my parents to lunch at the Cheesecake Factory as their Valentine's Day gift.  I was excited to do this because I knew we always enjoyed our lunch there.  I was also excited because I was very much in the mood for my favorite dish, Evelyn's Favorite Pasta. I order this dish everytime I go here, and I order it in exactly the same way...with no oil sauce (so the pasta itself is dry, but the vegetables are sauteed in oil, so it's not completely bland).  I never had an issue before...this time, the dish came to the table soaked in oil not once, but twice.  Both times, the manager came to the table and asked how he could change the dish, and both times I calmly explained that I just wanted the pasta dry, not to be tossed in oil. The third time, it was dry, but the eggplant in the dish was horribly undercooked, to the point of being like rubber, completely inedible. It was bad enough that my food was not prepared correctly, but my Mom's food was not as it should be either...her salmon (which she usually gets, as well), was drier and thinner then usual.  Not their best showing. We were offered nothing in the restaurant for my botched dish...nor did I make a fuss...

When I came home, I went to the Cheesecake Factory website and left a comment.  I thought that, at most, I would get an email saying they were sorry for the inconvience and maybe a coupon for a cheesecake slice. I got much more then that today. I was shocked when this afternoon the GM of the Cheesecake Factory called me to apologize for the problems that occured and vowed to have a meeting with his staff to ensure this would not happen again.  He also told me to ask for him personally so this problem does not happen again for me.  He said that he will send me a gift certificate for free cheesecake and coffee in the mail to entice me back to the store.  I was truly impressed!!

I HOPE HOPE HOPE that this shows people that sometimes the nonconfronational way of dealing with things can get things accomplished without anyone getting hurt.

The Go Ahead

I got the "go ahead" from my rheumatologist to lower my prednisone from 15 mg to 12.5 mg.  YEA!  I will lower my dose on Monday (today is Tuesday...so I still have some time to feel good).  I am so excited to have a great weekend with my family in town...this is the first time I am actually excited about them coming down, not really worried about how I will feel.  I know that on Monday, things will start to change, and I will go through the withdrawals, but I have a feeling that it won't be as bad. 

HOPE HOPE HOPE...and this time, it's not fraught with worry...what a relief to be myself again...

This Week

I think this week will be a good one...I just have a feeling.  I haven't had a feeling like this in quite a while.  Usually I am so worried about what will happen day by day minute by minute.  It's really amazing.  I am actually looking forward to the coming weekend, when my sister, her boyfriend, his daughter, and my nephew are coming down.  We are going to celebrate James's 5th birthday and Valentine's Day.  It will be so much fun with me feeling well, and no one stressing out over me being sick!! 

I can't even believe how clear headed I feel all time now...no burning in my head, no burning skin, nothing!  The hormones seem to be calming down...my own hormones are working.  How nice that something works...although no cycle yet...not that I mind.  HOPE HOPE HOPE this continues!!

In the Moment

I know that I have been writing about the day before, but since I have been feeling well, I have been feeling more "in the moment".  "In the moment" feelings make me want to write about today...feel today...not dwell on the past.  I guess that is a good thing!  Living in the moment is like the way the animal world works...it is so much simpler...makes life so much more enjoyable!  The way should be lived! 

Today I went to visit my cousin Danny's grave with my parents.  We go about once every month-2 months, depending on how I feel (if I am sick or not).  I know my Mom wishes we could go every month...so I do try.  Then we went to a WONDERFUL farmer's market.  We bought SO much fresh produce and fresh pasta...we also bought some pastry for my grandfather (that looked incredibly good!!).  When we got home I went to check my email and nearly got a virus on my Mom's computer...NOT GOOD!!  I spent about 3 hrs on the phone with tech support cleaning her computer out and making sure nothing was infected.  Luckily I did not download anything and nothing was corrupted.  The virus software still had to be uninstalled and reinstalled...2 times...ugh!  It is now running a full scan...this should take a while! 

All in all it has been a good day!  It has been a full week off the pill, and a full week of feeling pretty good...I am sensing a theme...I HOPE HOPE HOPE this keeps up!!

Figured it Out?

So after almost a week of feeling ok, maybe stopping the pill was the answer??  I HOPE HOPE HOPE so!!!  I've been out and about, and feeling ok...still no cycle...YEA!!!  Of course this means I will have to lower my prednisone soon...HOPE HOPE HOPE this keeps up!!!

Holy Wild PMS Batman...

WOW...I hadn't felt mood swings like that since I was a teenager...I wasn't depressed, because THAT I have definitely felt in the last few years...and I didn't feel angry, because THAT I felt pop up over and over again too thanks to the prednisone...this was, well, plain old PMS anxiety and weird kind of wired nerves/hormones raging...I felt like Mrs. Slocome on "Are You Being Served", saying, "I'm just in the mood!"!!  I kept telling my Mom that and laughing, although it was more a nervous kind of laugh, almost like I was explaining why I was acting kind of crazy. 

We went to see Dr. Salgado, my neurologist, which turned out to be one of the times I REALLY felt like saying "I'm just in the mood"!! He claims that I might NOT be having syncope!!  UMMM...then what am I doing when I lose consciousness???  I'm sure as hell not faking it!!  GRRR...I thought I was past these jerks thinking I was questioning me! I guess not...so my parents and I are looking into getting a heart rate monitor like the ones worn by people working out. That's show him  ;-)

I HAD to meditate when I came home!!  I hadn't done that in a long time, but I found one of my cd's and my cd-man and turned my light off and just zoned out for about 15 minutes.  It was VERY resorative!!  I felt 100% better when I was done!  I MUST remember to do that more often!!  I used a natural sleep inducement cd, which uses sounds of the ocean to match your breathing with...SO nice and peaceful!

HOPE HOPE HOPE tomorrow is a little calmer, but at least I know what to do if the nerves come back!

Sunshine

I am reading a great book called "Sunshine" by Robin McKinley.  It is about supernatural beings living amongst humans.  A human becomes involved with a vampire and it is very well written. 

I just don't have much to say today...even about yesterday, where I did feel ok and even went out a bit...I am just tired and kind of PMSing...so HOPE HOPE HOPE I feel better tomorrow so I can write about it...

Full Day...Feeling Good...No "Pill"

Wow...I spent the whole day, from 9am-3pm out and about with my Mom (we even got the meet my Dad for lunch at Cheesecake Factory for lunch for a nice surprise).  It was a nice day...I felt pretty good, although tired by the time we came home, which is not unexpected considering I haven't done anything like that in such a long time!!  I could have done more if I had more medications with me.  I was NOT expecting to be out for SO long!!

I have a VERY strong feeling that I am feeling so good this week (normally my 3rd week of the "pill pack") because I am NO LONGER on the "pill".  I am not sure why I have to tell the doctors what is wrong with me in order for them to listen and MAYBE agree with me...most of them don't agree...or even if they DO agree, don't know what to do about it.  It is rather frustrating that it took THIS long for anyone to figure out that my pill was the cause of my flare ups.  Oh well...I will keep HOPE HOPE HOPING that tomorrow will be as good and that my body really is adjusting to "normal" hormones!!

Lazy Day, Clearer Head

I finally realized that my head is clearer.  I lowered my Topomax a couple of weeks ago, back to 200 mg and my head feels so much more like myself.  I am remembering my medication schedule, names of people and dates...I am not NEARLY as depressed...things don't seem as hopeless, even when I am sick.  It is about time!

My Mom and I didn't do anything yesterday because it was raining ALL DAY...which was kind of nice.  I have the MRI of my brain tomorrow...HOPE HOPE HOPE things go well...

Sigh...Another Weekend Down

Well, the whole weekend was shot thanks to me...my Mom really wanted to go out on Sunday, to visit my cousin Danny at the cemetery and then to go look for birthday gifts for James and could do NONE of that because I woke up sick.  I know she says not to feel guilty about that, it's not like I have any control over it, and yet...I do.  She may not realize it, but she MAKES me feel guilty about it...she gets into these funks when we can't do things she wants, or expects us to be able to do, and then is in a BAD mood for a while, until she adjusts to the day we DO have to live with.  She does get over it, but it takes a little while.  I feel awful when that happens.  I wish I could just suck it up and do what was expected, but I had SUCH a stomach ache and ended up having "D" that if I went on with the plans, I would have had the problem in the car...that would have NOT been pretty!!  I knew it was going to happen...I just don't think SHE realized it...when she did, her mood changed for the better.

I also fainted 2 or 3 times...I am SO tired of this! I stopped the "pill"...I seriously HOPE HOPE HOPE this is what helps!!  I don't know how much more of this I can take!  My body is going crazy...my mind does not seem so far behind anymore...although it is better now that I am back down to 200mg of Topomax...250mg of that and I was ready to jump out the window! HOPE HOPE HOPE for a better tomorrow!!!

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!!!