RE: Tricia

[Guest guest]

Howdy Tricia. This would be an easy question to answer if all of our

bodies acted as they medically should, but alas, they don't. I can only

offer to you what I personally have dealt with over the past 9+ years.

Prior to becoming ill in January of '04 I was the kind of guy that had

the " you can't hurt me " mentality. I was in the ARMY, Owned my own

business, participated in football, wrestling, track/field, hiking,

bicycling, power-lifting, running etc... I came out of High School @ 5'

7.5 " @198. Within a year at the end of Basic Training and A.I.T. I was up

to 206. According to the military height weight charts I should have

weighed 145. Just before I got whacked I accomplished one of my life-long

goals and bench pressed 405 lbs. By age 32 I was a rock solid 232...52 "

chest,22 .25 " neck, 35 " waist...you get the idea...I was a wall of sorts

who missed one day of work in my life and I was in the ER that day with a

kidney stone type of problem. The harshest thing besides a beer to ever

enter my body pre-stills was Ibuprofen, and that was not a

common occurrence.

Fast forward to the year I got sick. Initially they had started me out

on a horrendously high dosage of 1000 mg Motrin 6x/day until it totally

destroyed my stomachs ability to handle anymore " naprocen/ibuprofen " type

of meds. About this time my bacl literally started to kill me. Out of

nowhere I can stand up, can't walk without a walker etc. I did not have a

capable Rheumey or Pain Management Dr at that time, and I would give lots

to be able to go back in time and change that around. One point I have yet

to mention are the headaches I also get that started at the EXACT same time

as my first 107 fever. They are beyond description. The best way I can

describe them is to push in on your eyeballs as hard as you can until you

are ready to pass out screaming. I get that EXACT type of pain except it

feels as if someone or something is forcing my eyes out of their sockets.

My eyes will swell almost completely and I will get double and even

quadruple vision. Seen 4 different Neuro-Opthamologist type of Dr's on top

of 5 Neuro-Surgeons and over a dozen MRA/MRI/CT scans, EEC tests, 6 or 7

spinal taps. The list goes on and to date I have just under 2000 pages of

medical records since this began.

Now......with my back I had seen a number of neurosurgeons and followed

the advice of a few and had a morphine pump implanted into my left lower

abdominal area with the catheter going directly into the base of my spine.

I recently had to have it replaced as they generally last 4-7 years. This

is one of the best decisions I have ever made medically, as it allows me to

live more of a normal type of life compared to what I was facing. Due to

steroids I have already had Osteoporosis and took 18 months of Forteo to

bring my bone density back up, but you can only use 24 months worth of that

in a lifetime so I am running out of room, so to speak. I most likely will

eventually need total back reconstruction, but I am a high risk patient and

prefer to not even think about that until I have literally exhausted every

other option known to medical science!

For the generalized yet quite horrific pain associated with Stills (yet

not related to my headaches...more on that later) I was started out on

Vicodin and Percoset. That did little if anything and before I knew it I

had a good Pain Dr and had Fentynal patches and Roxi-codone (fast release_

along with Oxycontin. Luckily for me I never saw or felt a reason to take

them anymore than I have ever had to and am able to o weeks at a time

without. For the most part my Stills type of pain has been well managed

after 18/20 months of going to the wrong Dr's and aside from the infrequent

injections and such I am able to face life on a day to day

basis....mentally, at least!

The headaches have no solid answer. Most of my Dr's agree that they are

not related to Stills, but I'd bet every dime I ever owned they're wrong on

that front. Some necessary information regarding these headaches and Stills

with me in general is that 2 days after I received all of my vaccinations &

immunizations @ Ft. Benning, Ga I wound up in a hospital for 15 days with

what I recall to be the exact same symptoms. Indescribable headaches,

severe fluctuating fever, horrendous joint pain..you name it. I know I was

half delirious most of the time as I was able to call my Mom & Dad and they

were reeling. I recall very little but a few specifics do stand out. I

remember they couldn't get my temp down and I had sever chills. They placed

me in front of an A/C unit and when I kept trying to get away they had to

restrain me as I smacked the hell out of one of the staff. I also recall

being thrown into freezing showers and waking up in a tub of ice. The

mystery about all of this is that they seem to have " lost " any and all

traces of my military medical records and despite years of Congressmen, V/A

appts (worthless idiotic SOBs) I can not get anywhere with them. After 3

years of literal hell (and many thoughts of ending it all..... THANK GOD

for my kids or I would have) I was recommended to the Jefferson Headache

Center and was fortunate enough to fall under the care of Dr. Wm Young. He

tested me for every conceivable cause o the headaches and came up with the

diagnosis of New Daily Persistent Headache. It isn't so much

the diagnosis that gave me hope it is all of the other stuff that

he eliminated as a potential cause. I would have continued to see him but I

can not afford the trips to Philly, the fuel, the tolls, etc. I am barely

able to keep up with the necessities in life the way it is and I have to be

very careful with what I spend my $$$ on. I find that Ironic as I used to

work up to 100 hours a week and used to roll in cash. I had over $30k in

cash in an envelope when IU first got whacked and If I had not have had

that I would no longer have anything.

The only things that help my headaches is 1) Dilaudid 2) Ice packs on my

eyes. After being in the " resort " well over 2 dozen times in the first few

years my PCP prescribed Dilaudid pills for me. I hate taking them as you

can't drive or do a lot of anything when you do and I hate sitting still.

On the other hand they have been a lifesaver of sorts as there have been

countless times where they pain was intolerable and they barely managed to

keep me out of the ER/Resort. Last week was the 1st time in well over a

year that I had to be admitted and administered the medicine intravenously.

It took them 3 days to get it below an *8* but they did. The horrible art

about the headaches is that I almost ALWAYS have at least a moderate

headache, though they are far less offensive in the summertime for

some unexplained reason. I have never been in the resort after May 15th or

before October 15th...and I am approaching 4 dozen " trips " .

One thing that helped my headaches outside of super duty narcotic meds

is BOTOX injections, but Medicare will no longer cover them as they are not

considered to be a cure, or however they word what they don't want to pay

for.

The only other things that seem to help is to keep myself as active as

possible, and my kids allow me to do just that. I love fishing.....I still

love " work " , but I am not able to control when I want to do anything, I

have to listen to my boy. Every single time I push myself I pay for it with

heavy interest. One example is I used to fish BASS tournaments. Well, you

figure you are up by 3:00 AM to meet @ 4:00AM. You drive an average of 90

minutes, wait for every single " idiot who can't trailer a boat "

get there boats into the drink..start fishing @ first light, fish for 8

solid hours.....wait for these very same morons to get their boats back

onto their respective trailers (It is better than going to the circus at

times, and the ones' who swear they are the best at it usually take 30

minutes to get done what takes someone with a brain about 5! Than you lolly

around until they get the weigh-in going, see where you placed, collect any

winnings....pack your gear, tie down the boat, drive home..unpack your

gear...store your boat....It averaged out to a good 13-15 hour day. The

last time I tried it I wound up laid up for 11 days straight!

I still love competitive fishing, but can no longer afford the time, stress

or $$$. I have started a part timers club with a few others. We only fish a

few tournaments per year, they all must be during the week in

the afternoon and can last no longer than 4 hours total! We don't have a

lot of interest yet but I don't much care. We started out with 3 of us and

now have 5 definitively. I still love getting out wth my kids either @ my

Parents' cottage (9 miles away from me) or down the Susquehanna River in

Exeter/Wyoming, Pa (within 5 miles). My boat hasn't moved in almost 2

years, but I will wait until I see what direction my kids take with fishing

before I decide to move on that. My youngest is begging me to get him out

in it this year so if all goes ok and the price of gas allows I may get it

out at least a few times this year. I could never get out of it what I have

into it so it isn't harming me being properly stored/cared for. I actaully

have to thank GOD I wasa professional mechanic (ASE CERTIFIED MASTER AUTO

TECH/Associate degree in Auto/truck repair/ thousands of hours of extra

training etc..) as that has allowed me to keep my vehicle cost way below

average and still be able to operate every piece of equipment I own without

worry.

Oh well, I probably went way out of bounds here...but I get like this at

times. I pushed myself too hard all weekend to make sure my Wife had nice

Mothers' Day and 16th Anniversary. This included driving to Hershey,Pa as

my oldest son (13) attend the Milton Hershey Academy. My

body struggles with being active more than 8 or so hours a day and I

stressed myself to 16 yesterday and 14 today. I know damn well I am going

to pay dearly for this but I have to try and keep the people that matter to

me as happy as I can...even if it hurts badly to do so.

To all of you Moms out there,,,Happy Belated Mothers Day!

Kirk

--

Everything in life sucks except things that should!