About 4 years after being diagnosed with RA, I started
having a very intense, sharp pain in my knee when I walked. It was a very different pain than what I was
used to with my normal inflammation. The
pain was alleviated greatly when I bent my knee and walked around. I told my rheumatologist about it and he
mentioned that it sounds like I had a tear in the cartilage of that knee. He advised me to see an orthopedic surgeon to
see how extensive the damage was and to get recommendations for surgery, cortisone
injections, therapy, whatever would help my extreme knee pain. I made an appointment with the orthopedic
surgeon and in the meantime, got some forearm crutches that helped immensely
with my ability to get around.
It took several weeks to get in to see the orthopedic
surgeon. When the day of my appointment
finally came, the technician took x-rays and I gave a short explanation to the
medical assistant that my rheumatologist said it sounded like a tear in the cartilage. The doctor came in with my x-rays and said,
“Riley you have the knees of an 80-year old woman.” (I was 22 at the time) “Your knees are bone on bone.” I was a bit shocked, to say the least. A couple of years after I was diagnosed, I
had the thought that I would probably be in a wheelchair by the time I was
30. For some reason, I hadn’t considered
joint replacement surgeries. I didn’t
think that it wasn’t an option for RA patients, I just plain didn’t think about
it at all!! More on my joint replacements later. Yes, replacements, multiple. Again, later.
 |
| About 5 months before my rheumatologist said I had a tear in my knee cartilage. You can see my right knee is extremely swollen, my pants are tight around it. I can barely straighten my knee because of pain and swelling. |
I was a bit upset at my rheumatologist. A tear in the cartilage? Ummm, there was no cartilage left to
tear!!! I knew that RA could be
aggressive, but my rheumatologist told me I had a “mild” form. Well, if I had a mild form that depleted the
cartilage in my knee after four years, I really felt bad for those with an
aggressive form. I have since changed
rheumatologists – multiple times – and have declared that I have an aggressive
form of RA.
I will say, part of the problem may have been my fault
because for a few years I didn’t have very good insurance and couldn’t afford
expensive, aggressive therapies to treat my symptoms. I lived on Tylenol and Prednisone for a
couple of years because I just didn’t have any money and they seemed to be the
best treatment for me at the time. My
rheumatologist never talked with me about my status, improvements, digression,
anything that made me feel like I needed to do more. He did mention studies for biologic
medications that he felt I would be a “good candidate” for. I would get medication at no cost and they
could possibly help. Well, I saw the
side effects and said no way after I saw the word “death”. I wasn’t about to inject myself with a
medication that could possibly work and could possibly have a
side effect ending in death.
Sorry, I just wasn’t comfortable with that.
The thing that cracks me up now, is that I stayed with that rheumatologist
for another 5 years!!!! Why did I do
that?!?!? I have no idea. I did try to break ties and try another
doctor in Las Vegas at the recommendation of my orthopedic surgeon. Ummm, that was a little scary. I temporarily decided that my previous rheumatologist
wasn’t so bad after seeing the one in Vegas. Buuuuuttt, then I remembered what a robot he
was and I started looking around again.
There is a serious lack of decent rheumatologists. Especially in my neck of the woods. I was able to find one only 60 miles away
instead on 250, so I started going to him.
He was worse than the other two I had seen combined! Thankfully, the only thing I really needed
from a rheumatologist was prescription refills.
I had stopped taking biologics and methotrexate for a couple of years
while I had my two girlies. But this guy
really drove me nuts so I went on the hunt again for a new rheumatologist. I knew I would have to be on a waiting list
for a long time to go where I wanted to (University of Utah Rheumatology
Clinic), so I called them up. They were
a couple of months out on scheduling new patients. I was pregnant with my younger daughter when
I was finally able to see someone. Hallelujah!
He is amazing!
Why did it take me 12 years to find a great
rheumatologist? When I was diagnosed at
17, I feel I was quite independent. I
was going to college and living in a college apartment with roommates. I had a part time job and was trying to make
good financial decisions. But I was also
inexperienced, vulnerable, timid, and unsure of my options and my ability to
make decisions related to doctors and treatments. I just didn’t know any better.
I’m here to advise you that YOU HAVE A CHOICE! For whatever ailment/situation you may have,
you can be the one to choose. The reason
I went to that one in the first place is because that’s why my general doctor
advised me to see. I truly thought it
was because he was the best and that’s why I was being sent to him. It was probably more like he’s the first one
who had an opening the next day after I went to my general doctor with large
amounts of swelling and pain all over my body.
I needed help fast.
I’m sure you need help fast too, but after the initial appointment
and diagnosis, it’s OK to look around for someone who will be great for
you. Really search, ponder, and
investigate someone who may be your amazing doctor. You are a wise person; use that wisdom to improve
your situations.
Now, a call to anyone who is thinking of going to medical
school: may I suggest that you consider specializing in rheumatology? I tell that to everyone I talk to who is
going to medical school, but so far it seems like oncology and pediatric
oncology is the popular choice. I will
say, I recognize that there is a growing need for good oncologists, especially
pediatric. It a very noble
specialization that I’m sure can give great fulfillment. But so is rheumatology. It may not sound as glamorous, but remember
that I said there is a serious lack of decent rheumatologists. Many of the good ones are aging and there
aren’t many interested in filling their spots when they retire. If you become a good rheumatologist, just
think about how many people will look to you for relief from every day pain for
years and even decades to come. Chronic
diseases like rheumatoid arthritis aren’t going anywhere, and we need you to
help us. And not just for RA. Scleroderma, Lupus, Vasculitis,
Psoriasis, and many more conditions that rheumatologists are trained to treat! If you don’t help us, who will? We can’t live off of Tylenol and Prednisone
forever.
Riley
No comments:
Post a Comment