My Story (warning will be long!)

[Guest guest]

I was fairly healthy until I was in high school. Once I hit 15 I

seemed to stay sick after I had mono and strep. The aches and pains

just didn't stay away. My constant pain originally started in my back

betweeen my ribs. I finally did complain to my doc after about 4

months. I could not even turn without feeling like the " catch " was

going to get tighter. It was just really discomfort at first. I got

an x-ray of my back and put on anti-inflamatory meds. The x-ray

showed that my growth plates were not completely together yet. So, I

was diagnosed with epiphisitis (inflamation of the growth plates).

I continued the meds for over a year the pain started to spread so

we changed meds. I was gaining heigth so we really didn't question

the diagnosis. I was switched meds I can't count how many times. I

was increasingly having sinus infections, bronchitis, and recurrent

ear infections this continued until about 6 months ago. I was

diagnosed with asthma by the time I was 17. I have never been much of

a sleeper. I have always slept less than 4 hours a night and never

all at one period of time. Okay fast forward three years....nothing

changed.

I returned to a second community college. I had been working as a

phlebotomist at a local hospital. I was sleeping NONE for quite a

long time. I had 15 credit hours and working full time. I also was in

two performing choral groups. By November of 1996 I was a mess. The

only time I would sleep was in school. I slept through my Psych

class. The teacher would ask me to read in class. I would pick up

where she left off and be out of it. I functioned barely. I always

responded correctly. In choir, I slept, sang, and learned music

without remembering being there. I amazed everyone that I was still

functioning learning and maintaining a 3.875 GPA.

I finally got referred to a rheumatologist after many test. Finally,

a FMS diagnosis. Instead of just pain killers, antibiotics (when I

had all the respitory garbage), now I got anti depressants. Okay, 9

anti-depressants later. I was still functioning at the same level.

Tired, not sleeping, still doing good in school, still working,

maintaining relationships or trying too! I am on my second primary

doctor now.

I have been on at least 25 anti-inflammatories most don't work and

if so not long. I wasn't at this point even missing too much work.

In August of 1998, I started having major breathing problems.

Phenumonia and recurrent bronchitis....now I get more breathing meds.

So, I am put on prednisone and inhailed steriods. After a couple more

weeks I was not improving. My primary started researching all of my

meds. My pain med at the time was a very high dose of ibuprofen. I

had a very rare triad of symtoms that he read about and indicated I

was allergic to the ibuprofen....breathing problems helped!

The next step was pain management. They tried PT, massage, and more

meds. With the steriods and now cortisone shots I gained 50 lbs in

two weeks. My breathing got bad and I was so swollen. Next, I got put

on lasix......lots of it. I didn't lose the weight....not till this

year.

After gaining that weight I was mad at my doc and I felt ignored. I

decided to change my primary to an internal medicine doctor, who is

my current doc. I was starting to have trouble at work by this time.

I had to take FMLA time and it was really stressful. I still

continued to see the pain management doctor. He put me on another

anti-inflamatory med. I had a severe respitory reaction to it and

ended up in the ER. I was to start PT the next day. The med I was

given to stop the vomiting left from the anti-inflamatory med. I

ended up reacting to.

I went to PT and my mouth started to feel funny. My muscles were

getting tight in my jaw. Within 10 minutes my body was very

contorted. I looked like I had CP. The ER doctors and staff who I

work with did not even recognize me. It was a scarey experience to

say the least. Unfortunately, there are more similar things to come.

I still remained in fairly decent moods. I was frustrated to say the

least. My primary doc was working very hard to get everything

straighted out.

My meds were getting very limited. Allergic to NSAID now. I can take

tylonol and vicoden. So I worked, went to school, and everything. My

stomach was starting to get messed up. Get to see a GI doc now.

I went threw several weeks of vomiting and other stuff. I was

finally diagnosed with GERD. I spent some days in the hospital, had

test, more meds. I ended up dropping my classes in Spring of 1999. I

just couldn't do it anymore. My FMS was relentless and I was just a

mess.

My wedding was coming up in Sept 99 as well. I give my husband

credit for hanging in there. The worse was yet to come. I did end up

with horrible cramps in my legs. My potassium was low, my magnesium

was critically low. I still continue to have very low magnesium. I

have been on very large doses of oral magnesium (mg+). I have had IV

infussions and injectable on a weekly basis for almost 20 months

now. My level is drawn every three weeks.

My wedding came and went it was wonderful. I didn't miss out on two

much. Never felt wonderful the whole time but I still enjoyed my

wedding and planning all of the fun stuff.

I had another inpatient stay. I got a really bad case of the flu in

Nov 99. I finally returned to work and was in and out most of

December. In January I was admitted again with GI stuff. I had a fall

and messed up a knee in Feb. nice bone contussion and major flares of

my FMS. I have had flares almost constant for as long as I can

remember. I was on thin ice with my employer from all of my absenses.

I almost always tried to go and tried to stay in a decent mood.

I had to do PT for my knee and that continued until April. I started

having more GI problems. I was constantly throwing up...no liquids

stayed in. I wasn't eating because I just got tired of expelling it

all everytime. I started loseing weight. I lost 40 lbs in 5 weeks.

The weight stayed off. I went back to the GI doc....now with a

diagnosis of IBS.

My very last day of PT I was on the tread mill and my head just

started the spinning feeling.... I felt very high on medication,

thing is I stopped most of my meds cause they weren't staying down

still. At the highest point I was on 23 meds. I stopped most all of

them except my GI meds. My FMS was in flare mode and now the

dizziness.

I went to the ER twice in two days. I could not understand why I

just kept spinning and feeling drunk. I was falling into things,

shaking uncontrollably, nothing helped... In May I woke up and my

right ear popped. I lost 80% of my hearing at once. My ears had

always rung so it was nothing new. I next was sent to the Ear doctor.

More test....undeterminded vestibular disorder. I basically did not

return to work much after this. I was just too unstable and running

into everything. Dizziness and needles don't go together and I didn't

want to hurt the patients. That is just how I have always thought. If

I can't do my best I will find something else to do.

By July, I was still dizzy and unsteady. I stopped most of my meds

in june but continued my anti-seizure med and GI meds. Once august

came I could not afford my meds so I stopped all my meds. I started

increasing my drop attacks, blackouts, and started having seizures. I

had no prior seizure history before August. I was only on my anti-

seizure meds for the FMS sleeping affects.

This continues my husband starts to get angry cause I am not

working. I understand his frustration because I would love to get out

for more than walks. I don't drive because of safety concerns. On

days I feel so-so I have him take me out. Goofy thing....I have never

been depressed or anything. I am still waiting to find out what is

wrong with me. I want the answer to this huge riddle that has been my

life. I only get frustrated when people tell me I am being lazy and I

don't want to work. It is a very untrue statement. I would LOVE to

feel stable enough to even work for an hour unassisted. I don't feel

stable. I am still running into things. I have had more seizures and

black outs. The number is increasing so I get to go for more testing.

We have no savings left, I no longer have health insurance since I

lost my job. I am going to look into filing for disability.

There is an off chance that my seizures, dizziness, and hearing loss

may be from a head injury that I got on the job in 1999. I hit my

head on the ground when I fell in an icy parking lot. I am kind of

hoping that will be the answer. Then I don't have to continue this

LONG neverending quest for what is wrong with me.

Now that everyone is asleep and tired of me rambling, I will close.

But hopefully this kind of tells why I had to vent the other day. I

am in a decent mood as usual. Hoping to be tired enough to actually

sleep tonight. Thanks all for reading. I feel better now.....

Gentle hugs to all,

Kim

[Guest guest]

Hi Kim,

Just read your post and wanted to tell you that I am praying for you. I am

glad that you can vent with us. It is nice to know that we all have friends

here whenever we need them. Hang in there! Big gentle hug your way.

Much Comfort and Peace

Janice

[Guest guest]

Hi Kim,

Just read your post and wanted to tell you that I am praying for you. I am

glad that you can vent with us. It is nice to know that we all have friends

here whenever we need them. Hang in there! Big gentle hug your way.

Much Comfort and Peace

Janice

[Guest guest]

Kim:

I just read your story. Boy, you've been through it. It amazes me that you

didn't become depressed. I admire your tenacity in trying to find things

that will help. There IS life after disability, so don't hesitate to

apply. There are still opportunities to participate in society....its just

easier because you can do it as your illness allows. Good luck to you and

nice to have you here.

Peggy