Member Profiles: O
Angela Osborn
Location: W. Burlington, Iowa
Birthdate: January 27, 1964
Diagnosed: Febuary 3, 1998
Message:
In July of 1997, we had a chemical spill in our dept at work. I found myself soaked with a highly toxic chemical,
and had to right away take precautions about it. One week later, I had broke out in a rash. But, at first
I thought that perhaps it could be a 'heat rash', because when it is July in Iowa, it can be torture.
And it was alittle over 100 degrees in my dept the day of the accident. So, I just decided to keep an eye on the rash.
Although this rash was coming back every day around the same time each day. Then the rash began to take on a different likeness.
Suddenly, my body began to change. I had been very active with my three young children, and I was newly married.
I began to have locked up joints and then it seemed like every muscle in my body was in horrible pain.
I was suffering from flu like symptoms and then started getting high temps. It was terrible. I had been a hard worker before,
with few limitations and then suddenly I found myself unable to do much of anything. Washing dishes was a hard task all of the sudden.
I could not stand for more than two or three minutes at a time and the pain never seemed to disappear.
I was used to being able to recover from things like the flu or infections in a few days but, this did not
seem like it was ever going away. I began to wonder if I was ever going to get better. That had not occured
to me before until, one night my husband had taken me to the Emergency Room. The doctor there had run some
blood tests and then came back to tell me that I would need to consult my reg. dr. the next morning, as he
was going to fax the blood results to their office right away. He told me that he thought that I had
Rocky Mountain Spotted Fever, because of the way that the rash look and the way the blood work was.
So, my Mother went with me to see the doctor, and that is when they referred me to the Univ. of Iowa,
with is like a Mayo clicic around here. Everything seemed to be happening so incredibly fast at that time.
I was not myself back then at all. As I look back on it now, it all seems like such a big blur. I was so sick
and had absolutely no energy at all.
I did not feel like I even had the energy to make the hour long
trip up to the Univ. Everything wore me out. Once my husband and I got up there, I had to under go
all kinds of tests. At first, they told me that I did not have the Rocky Mt. spotted fever. But, they
did think that I had some sort of rare type of Lupus. I had all of the symptoms. But, they then told
me that I did have some other factors that were coming up that they had to concider. So, they referred me
to the head of Rheumatology. This doctor, was brilliant and had carefully studied everything that was before us.
He had a hunch that perhaps I had this rare illness, that we all know now as Adult Onset Still's Disease.
Because of the pattern of the rash, the high temps and the way that the rash came everyday around the same time,
and of courses all of the pain, gave him a clue that this could be the illness that I had been suffering from.
The crazy thing is, that even at that point, I had not ever thought of myself as being 'sick'. I was ill,
but never concidered the possibility that I had some sort of an 'illness' that I would have to deal with.
But, here I was, almost numb with the news. He told me that I was very ill and that this was one of the most
stubborn and hardest diseases to diagnose and to treat. Of course no cure, and then the reality of having to
be experimental with the type of meds I would have to be taking. He shared with me that very few Still's
patients have the same meds that are helpful. So, we would have to start from 'scratch'. And see what would work.
Needless to say, that first two years was super scary, as I had to take about 19 different things.
The biggest thing was the steroids!!!! Wow! What a shock those were. He had me on 80 mgs. a day for four years.
The first four months, I had gained a TON of weight. Which I hated. I had to learn so much about the side effects
of all of the medication, as those can be harder than the illness itself.
After awhile, I was not getting better, and on one day, I had met my mother and her friend for lunch,
which was rare for me, as I did not get out very often. I ended up leaving because I had not felt well,
and returned home to take a nap. I woke up to my sister-in-law's phone call. I couldn't begin to tell
you what it is we had talked about, as I was 'out of it'. She told me to hang up. The next thing that
I had remembered, was that I was in a bed at the ER and a dr. was telling me and my family that I needed
to go up to the Univ. of Iowa to see a specialist. My blood sugars were very high, almost 700 and that
they were afraid of a diabetic coma. That night is one of the strangest nights of my life. It is so hard to
imagine what it is like to be in a fog, not knowing if you are going to wake up of or. There are only a
few things that I had remembered from that crazy night, but, I am so eternally thankful, that God had my
sister in law call me when she did, because who knows what could have happened. I was up in the Univ.
for three weeks, and trying to wean off of the steroids. The dr.s up there had told me that I was over
medicated on too many perscriptions and that I was on too many steroids, and my body was not able to handle it.
Now, it has been over a decade, and I have come a very long way. I have not been in remission yet, but,
am thankful for where I am physically and spiritually. I have been in the hospital 69 times, between
here in our local hospital and up in the Univ. of Ia. From everything like, complications, illnesses,
flare ups, and infections. There for a long while, I was constantly in the hospital, but, these days,
I am able to conquer some of these flare ups at home. They can be very tough to get through, and no one
on the planet can identify with what we go through, other that those who suffer from other illnesses.
I am glad that my family and friends do not have to struggle with this disease. It has been the most
challenging thing that I have had to deal with. It is one of the lonliest experiences though.
I absolutely hate having to cancel plans with people because of suddenly I am sick or in pain.
Or because of the horrible insomnia that we deal with.
I have also been diagnosed with Fibromyalgia, after the first year I was diagnosed with Still's.
So, that too has insomnia, so I struggle horribly with this.
One thing that I can truly admit though, is that, if it wasn't for this illness, I do not think that
I would be the same person I am today. My husband and I split up after the first year we were married,
and I lost my job as soon as I was diagnosed. I am at a good place in my life now though.
I am at peace with things. Not only have I had to learn how to listen to my body, and know when to take a break,
but, I have now come to grips with the reality that the meds have taken a tole on my memory, too!
I used to remember things so well, and now I find myself struggling with short term and long term memory.
Weird. My children look at me like they could ring my neck sometimes! Oh well, I try.
One thing that I quickly came to realize shortly after being diagnosed, if that I think that I had always had Still's.
Because there have been different times in my life that I have noticed certain symptoms that I had before as a young kid.
Not many, but some. I had a basketball injury, that just seemed to never heal, and would ache off and on so much.
Also, I would find myself flush in the face at odd times. And even the rash had appeared once. And I just ignored it.
There were times when I had horrible pain that I had no idea where it came from. I would just tell myself that it was
just strained muscles, or something to that effect.
My heart goes out to each and everyone of you who suffer from this illness. And I know that your struggle is a
journey that few travel, but it is a life changer for the better for me. Of course, I live with pain each and every day,
and many days when people ask me how I feel, I just say fine. Because I believe it is better to be positive, other than
admit just how badly you feel. I have come along LONG way, but, I never forget the battle that I have had to fight to get here.
