Category: medical lingo

Rheumy Appointment #1

Posted on by Grayson
So I had my first rheumy appointment in forever today. Here’s the short synopsis of what went down:
  • Got there perfectly on time and the nurse was ready to take me back before I was even fully checked in
  • Found out I lost like two pounds, haha
  • Kicked a dude out of the examination room we were going into
  • Went over medical history with doctor’s assistant and then the doctor, which took forever
  • Changed into a medical gown for the first time since I was like 7
  • Physical exam – not invasive at all, DR was really nice
  • Pee test!
  • Blood drawing for complete lab work – they took TEN vials
  • Cranberry juice!
  • Hospital pants and robe
  • X-rays – 3 on each hand and foot, and two on each knee
All in all it was pretty exciting. Everyone at the hospital/Medical College was really, really nice. I even took this awesome picture for y’all to see:
The pants were entirely too big, haha, but whatevs – they were comfy.
I was pretty woozy after the blood business. I haven’t really been good with needles since I had to be around them all the time when I was little and my disease was still a mystery to us. I’d also like to point out that I have one heck of a migraine right now. Awesomeeee.
My follow-up appointment is on April 8th.

What’s the Worst (Continued)

Posted on by Grayson
In my post yesterday, I mentioned the problems that can occur in the eyes of people afflicted with Still’s Disease. If you were looking for more information on the subject, I found a very interesting and detailed article.
Also, this is a good article on different treatments for Still’s Disease, including diet alterations, alternative therapies, and knowing your limits. Some of the information on other pages of this site is not correct, however, so don’t believe everything you read.
There were a few conditions that I forgot to list yesterday.
Swollen lymph nodes can be very painful. These nodes are stations in your body that help to clean the lymphatic system. Still’s Disease uses this network to travel all throughout the body, so it is very common to have swollen lymph nodes when one is experiencing a flare up. Here is a map of the lymph nodes.
These areas can become inflamed whenever someone is ill. Most often this occurs when something is wrong in the general vicinity of the node – a sore throat will bring swelling to the cervical nodes, for example. If the nodes stay swollen for too long (2 weeks the site above says), or if they become hard, you should go to the doctor. However, it is normal for someone experiencing a long flare up to have nodes swollen for a longer period of time. You cannot always believe what you are reading regarding your body, because most articles are not arthritis-specific.
Nodules can also form. If you’ve ever experienced these, you know that they are extremely painful. A nodule is a collection of tissue in a ball- or knob-like form underneath the skin, generally in more bony areas. These can limit the ability to move, especially if grown near a joint. There can be other complications, including ulceration, neuropathy, and infection. While surgery can be performed, it really doesn’t do any good since the nodules can just grow back. Steroids can also be used as treatment. This picture is a little hard to see, but you can definitely make out the extra bumps on Angela’s hands. I tend to get them in the knee area, where they also can develop on top of the skin. This results in a pimple- and then scab-like substance, which can be picked, though it can be extremely painful.
There is also deformity to worry about. My fingers have already begun to turn and, on occasion, lock up.
My pinky fingers are curved. Both index fingers are, in the top knuckles, turning towards the middle fingers. My fingers are always swollen, but today seems to be a better day than I have had lately.
There are also emotional problems associated with the disease. Concern and fear of how the arthritis is affecting you is always a big problem. It is easy to become angry and frustrated with the fact that there are ‘able-bodied’ people who can do whatever they want whenever they want and who, very often, take that ability for granted. One can feel utterly helpless. Traditional medicines for Still’s Disease can be very dangerous to the rest of your body and there is no cure. Sometimes it seems futile to even try. Sometimes it seems like no one else understands you or cares that you are going through this. There are even times when you think that the people around you don’t believe that there is really anything wrong with you and just think you are a lazy bum. Isolation and depression are constant factors as well.
If you have a good support system, these feelings can be lessened, but still pop up from time to time.

What’s the Worst That Can Happen?

Posted on by Grayson

Being diagnosed with any disease can be scary. There are some that are obviously more notorious for their effects on a person – cancer, HIV/AIDS, etc. I’m not going to try and downplay any of the pain and suffering that people afflicted with those ailments experience.

Still’s Disease does not get a lot of attention. It is not a disease that can outright kill you or immediately change your life overnight (in most cases). There are, however, some very scary things associated with it.
Hepatic (or liver) Disease
The liver is an essential part of your body, one you cannot live without in some way. It cleans and filters the toxins out of your body as well as creates proteins and aiding in digestion (creating bile). There are a number of other tasks that this integral organ performs, but they are too many to list here. All in all, it is a fascinating organ.
The term ‘liver disease’ covers a number of different problems that can affect the liver – hepatitis, cancer, cirrhosis, and more. It is not quite clear what falls under this term when discussing Still’s Disease, but medicines taken for pain are also known to cause problems with the liver. It is important to try and take as little (over-the-counter) medication as possible in order to save your liver from serious problems later on. I will be the first to admit, however, that this is a very hard thing to keep in mind when one is in pain. In the past few months, I have tried to chronicle when I know I am taking too much medication somewhere, just in case. If you are someone with this same problem, it is not a bad idea to follow suit.
Splenomegaly (Spleen Enlargement)
When one looks at the other possible causes, it is easy to see why Still’s Disease would be included on that list. While this seems to be a painful problem, treatment involves treating the cause of this symptom and not the symptom itself. If the spleen cannot be saved, it can be removed. However, because of the spleen’s function regarding the immune system, this can cause problems down the road.
Pericarditis
The pericardium is the name of the sac that contains the heart. This is mainly exhibited as chest pain, but can also be misdiagnosed as a heart attack. If this is not treated quickly, the problem can lead to congestive heart failure. Generally, steroids and antibiotics are used to treat this malady, but it can also require other medicines and surgery.
Pleuritis
The pleural cavity is the one surrounding the lungs. If you’ve ever had the feeling that you breathed in too deep and caused pain in your chest, this could be the culprit. Coughing, shortness of breath, and rapid breathing (as well as turning a nice shade of blue) are the main symptoms of this problem. Normally, over-the-counter medicines are used as treatment, but doctors can also remove any fluid on the lungs and give a patient steroids if they need to. If the condition isn’t treated, other respiratory problems can occur. And I wonder why I have bronchitis…
Other problems:
  • The swelling of the kidneys and other related problems
  • Endocarditis, or the inflammation of the inner layer of the heart
  • Atherosclerosis (more prone)
  • Increased tear production (generally happens one eye at a time)
  • Inflammation of the outer white part of the eye (scleritis) can cause blindness; so can uveitis, the inflammation of the middle layers of the eye (I had this as a youngster, misdiagnosed as pink eye because the rash was present on my eyeball)
  • Anemia. Yes, we’ve talked about it before and it doesn’t seem to be a huge problem. However, behavioral problems in young people can be explained by this disease. It can also affect the heart and tolerance to cold. Living in Wisconsin with anemia sucks.
  • Damage to the nerves and nervous system (peripheral neuropathy and mononeuritis multiplex)
  • Atlantoaxial subluxation, or basically a fracture or other problem involving the first few vertebrae in the neck
  • The above two problems can also lead to quadriplegia
  • Osteoporosis (more prone)
  • Lymphoma (more prone)
  • And the piece de resistance, swelling of the brain. This can lead to dementia as well as, oh, death. Yeah, nice right?
So now you know a little more about the problems facing people with Still’s Disease. There isn’t just a fear of ending up in a wheelchair or being unable to move one’s fingers normally. As one can imagine, staring all these issues in the face every day is not pretty or fun. Even if someone can come to terms with the fact that these things are a possibility, trying to explain all of the above to people you care about can be pretty scary.

Cramps

Posted on by Grayson

No, not the girly kind. Bear with me while I explain some background junk before getting to the cramps.

It’s important to note the kinds of physical problems that accompany autoimmune diseases like Still’s Disease. In allergies, the body tries to fight against what it deems to be a threat. However, this threat is the host’s body itself. In autoimmune diseases, the body tries to overreact to each finger pop or leg bump to the coffee table. Not surprisingly, many people with Still’s have allergies, asthma, or any other immune system issues.
In most people with Rheumatoid Arthritis, there is an antibody which is directed at the body itself which causes the biggest problem. Rheumatoid Factor (RF) does not exclusively mean Rheumatoid Arthritis, but with the right symptoms it can. Other diseases with high RFs are hepatitis, leukemia, mono, lupus, and Sjogren’s syndrome.
After that medical lesson, let’s shift our attention back to the title.
In addition to my Still’s Disease, I have:

And some pretty interesting abdominal issues as well, but that’s a part of the JRA itself.

The amount of proteins and vitamins that my body doesn’t hold on to correctly cause a lot of problems. My fingernails and toenails suck, which isn’t that big of a deal unless you like to be barefoot like my hippie self does. I also get these terrible cramps, generally when I’m working, that extend from my lower back down to my calves. Sometimes these cramps get so painful that I can’t move my leg, which is not all that conducive to retail life.
I’m thinking it might be time to start taking the multivitamins that I bought forever ago.