What is Rheumatoid Arthritis, or RA?

Web MD describes it as such:

Arthritis means inflammation in a joint. Joint inflammation causes redness, warmth, swelling, and pain within the joint.
Rheumatoid arthritis is a type of chronic arthritis that occurs in joints on both sides of the body (such as both hands, both wrists, or both knees). This symmetry helps distinguish rheumatoid arthritis from other types of arthritis.
Rheumatoid arthritis may also affect the skin, eyes, lungs, heart, blood, or nerves.
Symptoms of rheumatoid arthritis are:
• Joint pain and swelling
• Stiffness, especially in the morning or after sitting for long periods
• Fatigue
How do I define RA? Life sucker.

What they don’t tell you in the description, or the symptoms, is that the fatigue is so bad; you can hardly drag yourself out of bed most days.

I was diagnosed with RA a few years ago, after struggling for a diagnosis for almost 3 years. All the signs and symptoms were there, but I didn’t test positive for the RA blood test, so the doctor kept testing, and prescribing meds, for everything else he could think of. I switched doctors, and she did her own blood work, and x-rays, and immediately gave me the diagnosis, and started me on medication to prevent further joint damage.

Medications are tricky when it comes to RA, and there are 100’s of medications, and concoctions they can try so as to find the right treatment for you.

I started on Methotrexate (MTX), initially. Methotrexate is described as:

METHOTREXATE is a chemotherapy drug. This medicine affects cells that are rapidly growing, such as cancer cells and cells in your mouth and stomach. It is used to treat many cancers and other medical conditions.

I started on a low, weekly dose, and gradually increased to 10 pills taken at one time, once a week.

Now, the tricky thing about MTX is, in order to offset the side effects, you are also given a prescription of folic acid, and with me having a sensitive stomach, I was already on Omeprazole, which is basically prescription strength Zantac, or similar. I noticed, after starting the medication, I was having terrible headaches on a daily basis. I later discovered, by process of elimination, the headaches were from the folic acid. As long as I don’t take the folic acid, I don’t have headaches. Guess what, I stopped taking the folic acid. The down side, if I don’t take the folic acid, I get mouth sores, and some slight hair loss. The mouth sores aren’t so bad that I go back to the folic acid. On the plus side, the MTX did significantly slow the hair growth on my legs! Win!

After a few months of no relief, I was put on Humira injections, and taken off of methotrexate. I was scared to death to give myself a shot, so Bob does that for me. Even today, I still can’t bring myself to do it. I know, I’m a chicken, but there’s just something about inflicting pain on yourself. I take the shots in my stomach, and was so scared when we did the first shot; I thought I was going to pass out. Turns out, they only sting, just a bit, while the medicine is being injected. The needle part is practically pain free.

I had some issues with my insurance and getting my Humira injections started, so I was without any medications for almost a month. It was then that I realized just how much the MTX was doing for me. After being on the Humira for a few months, and not seeing a difference, the doctor put me on a Humira and MTX treatment. Now I take my shots, and am back to my weekly doses of MTX. Right now I’m taking only 6 pills each week, instead of the 10 I was taking previously. So far, no improvement.

The other thing they don’t tell you is that you will have okay days, and you will have bad days. Pain is a constant, and you just learn to live with the daily discomfort, but there are days the pain is almost unbearable, not so much because it’s extreme pain, but because it’s a constant pain, that doesn’t let up.

Shoes. Oh, how I love my shoes. With RA, I’ve had to give up my heels and cute, strappy sandals. Anything that squeezes the sides of my feet, or goes over the top of my feet, is no longer an option. It’s very difficult to buy shoes that are stylish, age appropriate, and feel good. So, with RA, comes sacrifice. Major sacrifice. :)

Swelling. When I get home, my feet are so swollen, it’s ridiculous looking. It’s not the type of swelling you get when you retain water, it’s in different areas of the foot and ankle, so it’s actually quite odd looking. The knuckles on my hands will swell and turn red, and those hurt to move, or even touch them.

Eyes. Who would have thought RA can affect your eyes. I thought I had pink eye, my eyes were so red and puffy. The only thing I couldn’t figure out was why did it feel like someone was trying to squeeze my eyeballs, as if trying to get them to burst. After a doctor’s visit, and then an ophthalmologist visit, I discovered it was inflammation in my eyes, and not pink eye at all. More medication! At least this was eye drops and not more meds on my stomach. I will occasionally get inflammation in my eyes, and after several days, it will subside. I’m not sure if there are any long term effects of eye inflammation. I guess I need to make a note and ask the doctor.

Activity. While gentle walking is good for the joints, and helps prevent stiffness, finding the energy to do any type of walking is very difficult. If you do find the energy, within 15 minutes, it hurts so bad, you can’t stand the thought of walking back. I used to be so active. I danced; I played coed soccer and basketball, and was always on the go. Now, not so much. With reduced activity comes weight gain. And, boy have I put on the weight. This makes me sad because I worked really hard to lose all my weight about 10 - 12 years ago. Now I’m bigger than ever.

People. It’s a good thing I don’t take things to heart. My Dad is always telling me about an herbal cure for “arthritis”, and no matter how many times I try to tell him that RA is different than osteoarthritis, he still insists on the cures he sees on Dr. Oz. I just shake my head and move on. The thing is, to look at me; you don’t see the pain in my feet, knees, hips, and hands. I look perfectly normal. I think I do a pretty good job of keeping my illness to myself, and I try to keep my complaining to a minimum, or at least keep it down to just one or two people. It’s hard some days, especially if I’m having a bad day, and have to be at work. All I can think about is going home and wrapping up in a blanket, and sleeping, but the show must go on, so you have to push forward.

Living. I would love to be able to put on my dancing shoes and dance like I used to, but it won’t happen. I would love to have the energy to chase Mya around the yard, or shop all day with Andrew, but it won’t happen. Day long events require a couple of days of down time, just to recover. Long shopping trips means a long night of pain, and a morning of even worse pain. My life will never be what it was, but I’m alive, and I’m thankful for that. I’m well enough to spend quality time with my kids, even though it may not be the most fun time for them.

Marriage. I have to say, RA has taken a toll on my marriage. I’m completely and utterly exhausted all the time. By the time I get home from work, get dinner, clean up the kitchen, get homework, and everything else done that needs to be done, for the next day, I’m wiped out. It doesn’t leave much when it comes to intimacy. I feel guilty a lot of times, and sometimes I struggle with how to handle it all. I’m lucky that Bob understands, or at least pretends like he does, if he doesn’t. Not that our marriage is in trouble, but it’s nothing like it used to be when we were both healthy.

I don’t want sympathy, and I’m not writing this to gain sympathy. I just want to make people aware that not all illnesses are outward illnesses. Never judge a book by its cover. While you may see me smiling, joking, and laughing on the outside, I’m struggling, daily, with pain that will never go away. I struggle, worrying that one day I will be crippled and disfigured, or worse, the RA will affect my heart.

My daily lesson: Don’t take your health for granted. Live, laugh, and love, with everything you have. And, as the saying goes, dance like no one is watching.

TTFN