01 October 2008

The Beginning...

Okay, so...

The lovely and wise Michael suggested that I blog- I guess as a sort of release. He said that when his brother-in-law was going through treatment for cancer, blogging helped him. I am not really sure if this will help me or not, but I know that I don't want it to seem like I am fishing for pity. (Not to say that Tim, Michael's brother-in-law, was looking for pity, but rather that I don't really want to draw unnecessary attention to myself). Also, I figured that I am terrible about telling the people I am close to the things that are actually going on with me, so this is a good impersonal forum for people to know what's happening.

In case you're wondering, no, I don't have cancer. I was just diagnosed with a chronic disease that looks like all of the letters you have left at the end of a scrabble game- Ankylosing Spondylitis (AS). AS is a form of inflammatory arthritis- like rheumatoid arthritis- that primarily affects the vertebrae and the sacroiliac joints. However, it is considered a systemic disease, so other joints are affected, as well as complications involving the heart, lungs, ligaments, tendons and eyes. There is no cure and it is a degenerative disease, so the longer I wait to start treating it, the more damage I do to my spine and SI joints.

People have been telling me for years that I don't have a backbone; turns out they were right... well, sort of. I have one, it's there, it's just all angry and inflamed, because my immune system has nothing better to do than to attack my joints. I am in the middle of a physiological civil war.

Now, Dr. Afrasiabi, my rheumatologist, wants to start me on methotrexate. Methotrexate, it seems, is a jack of all trades. It is used for everything from treating AS and other forms of arthritis to chemotherapy for certain kinds of cancer to early termination of ectopic pregnancies. Maybe they will come out with one that will wash my dishes and fold my clothes as it kills my immune system.

Methotrexate is not without it's serious side effects. I am to have blood tests done every six weeks to make sure that it is not shutting down my liver or affecting the production of bone marrow. I also have to have my retinas checked every six months to make sure I am not developing cataracts or other retinal complications. One of the less serious side effects is hair loss (go figure, it's a freakin' chemotherapy drug), and one of the more serious side effects is death.

If you think this is an exaggeration, the following is an excerpt from the National Institute of Health's website link to methotrexate:

"Methotrexate may cause very serious side effects. Some side effects of methotrexate may cause death. You should only use methotrexate to treat life-threatening cancer, or certain other conditions that are very severe and that cannot be treated with other medications. Talk to your doctor about the risks of taking methotrexate for your condition.

Tell your doctor if you have or have ever had excess fluid in your stomach area or in the space around your lungs and if you have or have ever had kidney disease. Also tell your doctor if you are taking aspirin or other nonsteroidal anti-inflammatory medications (NSAIDs) such as ibuprofen (Advil, Motrin) or naproxen (Aleve, Naprosyn) or are being treated with radiation therapy. These conditions and treatments may increase the risk that you will develop serious side effects of methotrexate. Your doctor will monitor you more carefully and may need to change the doses of your medications.

Methotrexate may cause liver damage. Tell your doctor if you are taking any of the following medications: acitretin (Soriatane), azathioprine (Imuran), isotretinoin (Accutane), sulfasalazine (Azulfidine), or tretinoin (Vesanoid). Tell your doctor if you drink or have ever drunk large amounts of alcohol and if you have or have ever had liver disease, Your doctor may tell you that you should not take methotrexate unless you have a life-threatening cancer. Also tell your doctor if you have diabetes. Do not drink alcohol while you are taking methotrexate. Call your doctor immediately if you experience any of the following symptoms: nausea, extreme tiredness, lack of energy, loss of appetite, pain in the upper right part of the stomach, yellowing of the skin or eyes, or flu-like symptoms.

Methotrexate may cause lung damage. Tell your doctor if you have or have ever had lung disease. Call your doctor immediately if you experience any of the following symptoms: dry cough, fever, or shortness of breath.

Methotrexate may cause kidney damage. Be sure to drink plenty of fluids during your treatment with methotrexate, especially if you exercise or are physically active. Call your doctor if you think you might be dehydrated (do not have enough fluid in your body). You may become dehydrated if you sweat excessively or if you vomit, have diarrhea, or have a fever.

Methotrexate may cause a decrease in the number of blood cells made by your bone marrow. Tell your doctor if you have or have ever had a low blood count (decrease in the number of blood cells in your body), anemia (red blood cells do not bring enough oxygen to all parts of the body), or any other problem with your blood cells. Your doctor may tell you not to take methotrexate unless you have a life-threatening cancer. Call your doctor immediately if you experience any of the following symptoms: sore throat, chills, fever, or other signs of infection; unusual bruising or bleeding; excessive tiredness; weakness; pale skin; dizziness; confusion; fast heartbeat; shortness of breath; or difficulty falling asleep or staying asleep.

Methotrexate may cause damage to your intestines. Tell your doctor if you have or have ever had stomach ulcers or ulcerative colitis (condition in which part or all of the lining of the intestine is swollen or worn away). If you develop sores in your mouth or diarrhea, stop taking methotrexate and call your doctor immediately.

Methotrexate may cause a severe rash that may be life-threatening. If you develop a rash, blisters, or a fever, call your doctor immediately..."

Who wouldn't be excited to face a lifetime of this?

(In case you were wondering, I am quagmired in the denial/shock/bargaining/depression stages of the seven stages of grieving- or five stages, if you are an Elizabeth Kubler-Ross fan. I guess I just need to find that last path to acceptance).

I truly hope that I am not coming off as bitter. Part of me is excited; excited by the prospect of waking up one morning and not being stiff and in pain. Another part of me is terrified. Terrified about everything else: the drugs not working, the side effects, THE COST, and the weird isolation I feel. Up until a month ago, I had never even heard of Ankylosing Spondylitis, so I really don't expect anyone else to know about it either. Plus, I can't help but feel like there is this iota of disbelief on most people's parts. The stereotype for severely arthritic people are old, retired Floridians. I, on the other hand, am none of those things.

I wish I was making it up, or maybe that I would just wake up and realize it was all a nightmare to get me to appreciate the health and well-being I have.

So this is the beginning.

I will try to keep this updated as much as I see fit... and maybe Michael will be correct, and this will be cathartic for me.

1 comment:

Jenny Carey said...

Hi Rachel,
I'm Mike's sister-- just wanted to let you know we're thinking of you! I work with the Arthritis Foundation and have met several children and adults living with rheumatoid arthritis and know that the disease is serious but you can lead a normal (and even better) life with good treatment. I will check in on you frequently so keep us posted!
Good luck,
Jenny Nieto Carey