My name is Jeanna (like Gina) and I have known for about
three years that I have Scleroderma. I have had Raynaud's symptoms,
primarily in my feet, since I was seventeen. That's thirteen years now.
It started in the cold of winter when I thought I had been
bitten by a spider on my toe. There was a blue blister, right about where
my shoe would have rubbed on it a little bit, so it was terribly painful
to walk with shoes on, but even worse to go barefooted in a drafty house.
The "blister" itched horribly, but when I tried to scratch it or rub it,
it only hurt worse- not like the pain of a blister, but more like the toe
was broken. The joints in it were so stiff I couldn't even use my fingers
to move that toe. It was if the spaces between the tiny bones in it had
been welding together.
I tried to "soak the poison out" with hot salty water. I tried ointments
for insect bites and athletes foot, but it didn't go away until summer
returned. Then, like magic, it was gone.
The next winter, and the next...it returned. It wasn't until my son was
born (in November) that the "poison" started spreading to other toes.
Then, in the winter following the terrorist attacks of 9/11, it spread to
the other foot! This is when (after ten years) I finally went to the
doctor. It was finally obvious that this was no spider bite.
Upon looking at my feet, the doctor told me I had an autoimmune disease,
as if I should know what that is, and he continued, "...like Lupus or
something. I'll do blood work and you can come back in two weeks."
I was puzzled when three lab techs had to dig out books, debate among
themselves, and finally call the doctor to find out exactly what he
wanted. They finally took my blood and sent me home to look up Lupus in a
medical dictionary. (I had one because I used to be an EMT.) I cried when
I imagined my favorite time of year- summer time- becoming a problem for
me, as I read that Lupus is usually irritated by sunshine and heat. But at
the same time, this didn't make sense to me. It was not during the summer
time when I had a problem. It was winter that bothered me.
Two weeks later, the doctor informed me that I didn't have Lupus. I was
relieved until he told me that this wasn't necessarily good news. He
jotted some words down on one of three prescriptions he handed to me. The
scripts were each for prednisone. He said the words, "Scleroderma and
Raynaud's", again very matter-of-factly as if I should know what these
works meant. I didn't even know he was naming my disease. He said he
didn't know much about them but I could find out at ihavescleroderma.com
whatever I needed to know. That was it. He bid me farewell and left the
room.
I was told when I was ten years old that I probably had juvenile
arthritis, but the testing wasn't worth doing. That doctor- I remember
like it was yesterday- leaned close to me and looked me in the eye saying,
"My best advice is that you always stay active! When you stop, when you
let yourself become a couch potatoe, you won't get back up. Stay active!"
I was already athletic and very strong so this wasn't difficult. I just
kept going until I was sixteen and my family had moved more times than I
care to count. I was having trouble fitting in and keeping my grades up,
so I started drinking a lot- socially- because this is what it took to
have "friends". This is also when my body started falling apart. I was
also smoking- for the same reason- and had been for about four years by
that time.
I was twenty three when I found out that my abusive, alcoholic husband and
I were going to have our first baby. For once, I did the smart thing and I
left him- cold turkey- for the sake of my baby. But the pregnancy was
hard. I was sick and tired from the beginning and it only got worse. I
started contracting at five months, but had to work full time just to keep
medical insurance. I was living with my mother who was married to an
alcoholic (non abusive) and they were in their own little world together.
I didn't know anybody, really, so the depression coupled with the constant
fatigue, nausea and joint pain.
To make matters worse, I was being told that my baby probably had spina
bifida. (I didn't know at this point about my own illness, but it probably
affected my liver to show the wrong result on the tri-test.) I went
through several detailed sonograms to rule out (as much as possible) spina
bifida. I started dilating at seven months, but made it to 39 weeks before
having to have an emergency c-section.
The baby (Jason- now six years old) was very small but the healthiest baby
I've ever seen. He is smart, strong, active, and has the capacity to
become a doctor I think!
In August, 2002 I started a stressful position operating a switchboard for
five major hospitals simultaneously. It was a temp-to-hire position to
start with, but the hospital did hire me and sent me to get immunizations
including my very first flu vaccine. I really had never had the flu
before, but took it anyway because I was working in a hospital. I went
home that day feeling like I had the flu; chills, weakness, body aches...
That week (NOT due to lack of appetite), I lost ten pounds that I didn't
need to lose. The following week, ten more. I got down to (at 5ft, 5in
tall) 108 pounds and this included a great deal of muscle mass from
previous athletic activity. My ideal weight is 135.
A couple of weeks later, still feeling just aweful and now living in my
own apartment with my preschooler to myself, I noticed a great deal of
blood in my urine. The intense kidney pain started within days afterward,
along with fatigue, constant hunger, thirst, still achy and chilled more
than normal.
During the course of the next year, I was seeing my obgyn, a urologist,
and kidney specialist, and my PCP- at least one visit every two weeks. I
was having to take time off from work for most of these visits, only to
reconfirm my original complaint. It was one step forward and two steps
back. I would go in and tell them I have bleeding and pain, having been
hospitalized about once a month for three or four days at a time each
time, and eventually, I would tell them that lab results showed calcium in
my blood and urine. No infections of any kind, just bleeding and calcium.
These visits AlWAYS led to another trip to the lab or to have some picture
taken of my urinary tract, which only led me back to the doctor's office
to be told, "Hhhmmm, you have calcium in your blood and urine." or, "Hhhhmmm,
you have calcium deposits in your kidneys." I would always ask if this had
something to do with my scleroderma, but each doctor said with certainty,
no. One doctor- an actual rheumatologist- told me that I don't look like I
have scleroderma, and "If you've had the disease for as long as you've had
the symptoms, you'd be dead by now." He then left the room and I never saw
him again.
After ELEVEN MONTHS of this cat and mouse game, and with my job on the
line, they finally re-tested my parathyroid. My PCP had done so early on,
but it came back normal. This is the gland in your neck (there are four of
them) that controls the calcium in your body. It goes up, so does your
calcium and it leads to fatique, weight loss, depression, etc. Now that
they ran the test again, mine was three times higher than normal!!
Here's the maddening, frightening part: Eleven months worth of sonograms,
CTs, and other specialized scans missed TWO HUGE kidney stones that were
stuck in my ureters. These are the tubes that lead from your kidneys to
your bladder. The urologist laughed when he finally found them and said
that having a kidney stone on each side NEVER happens. He said he would
have to surgically remove them immediately and replace at least one of
them with a stint. He said that the stints are so painful, he would not
put them on both sides of me unless he had to. I woke up in outpatient
surgery with a stint on each side! I was absolutely crippled for ten days
before I called demanding that he take them out four days early. I could
not sleep even on heavy pain meds, but could not really be awake either.
Could barely walk and using the bathroom, as constant as it was, was
incredibly painful. This is like a coat hanger with about an inch-wide
coil on each end. One end sits just inside the kidney and the other end,
just inside the bladder. Removing them is the worst part. No anesthitic,
just a pair of plyers and a good, hard tug.
I was replaced and therefore "let go" of my duties at the hospital, so I
no longer have medical insurance now.
I was concerned about scar tissue, with the Scleroderma, but not looking
like I have scleroderma is not necessarily a good thing. The doctors don't
give it any credibility with me. They simply dismiss it as if it isn't so.
By the time I recovered from the stints, it was time to have my
parathyroid removed. The surgeon, Dr. John Crawford at Harris Methodist
Hospital in Fort Worth, Texas, was the best ever. He was compassionate,
kind, supportive, informative and didn't waste a moment of my time sending
me for unnecessary tests. He explained that because this was not a
hereditary issue, his experience was that it will come back eventually.
But, he said that I was weeks away from dialysis and would soon be on it
if I didn't have this done. He said that after this surgery, I may
continue to pass some stones for a while, but most of them should
dissolve, at least getting small enough to pass on my own. The surgery
took place in August, 2003 and I passed a rather large stone a couple of
weeks ago- April of 2005. I did manage it on my own with a lot of prayer
and some pain killers, but it makes me wonder if another parathyroid gland
is bad. I can go two months without a glass of milk, no ice cream and very
little cheese or yogurt...and still, my calcium level is NORMAL- not low
like it should be under those circumstances.
Although all the above doctors don't see the link between
my parathyroid issues and the scleroderma, my chiropractor begs to differ.
He says, "Of course it's related- hence the calcium deposits on the skin
of so many scleroderma patients."
Please, if you have calcium deposits on your skin, in your kidneys or
anywhere in or on your body, TELL your doctor you want your parathyroid
tested. If it comes back normal, ask your doctor to use a different lab.
Different labs often use different techniques- and this can better your
quality of life with a fairly simply operation. It's in the back of your
neck and they have to go through the front, but my scar is barely visible
and they can sometimes take all four of them at once if you want them to.
Must sleep now. Take care and feel free to write with any questions or
comments.
jeannaj@sbcglobal.net
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