What RA does

As I approach my one year anniversary of being diagnosed with rheumatoid arthritis and fibromyalgia (because I didn't have enough ailments prior to then), I can reflect back. Although my mother has had RA for more than 20 years and I thought I was fairly educated on the subject, its different when you are the one living with the disease.

To be fair, I will say I had long since moved out of my parent's house when my mother was diagnosed so I was exposed to less of the day to day issues. For many of those years, I was busy with a career which involved lots of travel and pressures. But now that it is affecting me, I find I have learned a lot more.

I do not know what the standard protocols were for treating RA when she was diagnosed in 1989, but now the protocol is to treat it strongly and quickly to prevent many of the side effects and degeneration that accompanies the disease.

I was promptly put on prednisone for the short term, as a quick acting treatment, and plaquenile, as a long term treatment, and found out I was allergic to both. Then I was switched to methotrexate oral, dose upped, and finally switched to injections in the spring. That was until my compromised immune system caused my husband's mild cold to give me a double ear infection and put me out of circulation for two weeks while I recovered. I had to go off methotrexate to treat my ear infections with antibiotics.

Finally, I have been back on weekly injections for about six weeks and am starting to feel normal, or as normal as I ever will be, again.

Over the year, I have learned all sorts of fun things about RA and how it affects the body:

• This is how RA affects the rest of your body
• It can also cause hoarseness and other laryngeal symptoms.
• RA can have a significant impact on work and relationships.
• Its not just the disease but the treatments that can cause problems with your skin - ones I have include Raynaud's syndrome, bruising, red dots, and increase sun sensitivity.
• My favorite is how RA affects both your hands and feet.

And the treatment for fibromyalgia? Its just treating the pain so we are trying to manage that. But now I have both fibro fog and chemobrain so I can claim brainlessness regularly. I have problems remembering words and names these days and am constantly misnaming things and people.

What do I have to look forward to with RA and fibro? I have blood tests every eight weeks to monitor my blood levels, particularly liver function as methotrexate is hard on your liver. I bruise very easily and every cut, scrape, or bruise takes forever to heal.

In the meantime, as life gives me lemons I keep on working on that lemonade.

Now its my back

Lets return to the 'if its not one thing, its another' category. My back is being very bad lately. When I say bad it is causing me pain of the kind that makes it difficult to remain vertical for any length of time. That makes it hard for me to do things like walking around, cooking meals, cleaning, emptying the dishwasher, going to the grocery store, going to work, and feeding the cat among others. Nothing much. It also tends to hurt when I am sitting or lying down.

What can I do that does not cause me pain. I'm thinking. I'll get back to you when I come up with something.

I think what has happened is that the last treatment to my back has worn off. I have had these fun treatments where they basically stick heated needles in my back between the bones and kill off the irritated nerves which are causing pain. They are irritated because they are being squished as a result of my degenerating disks.

The treatments work for at least a year or so and can be repeated. Even though the nerves are killed off they do grow back but usually less so they cause less pain.

The problem is I am not scheduled to see my doctor until the end of May. I can try to get an appointment sooner but his schedule is usually very tight. Then I will have to wait to get the treatment scheduled which can take another 4-6 weeks.

I'm still thinking of something I can do without pain.

This has been a bad week

This has not been a good week for me and a lot of other people. First off all, the marathon bombing on Monday turned lives upside down. And it seems to be the only thing on network television these days. All my regular shows I record so I don't have to stay up late, have been superseded by more news coverage showing the same things over and over again.

I have a very busy schedule this week. I had a meeting after work Tuesday that went relatively well. I met with my boss at the job I am leaving to talk about transition and was pleasantly surprised to find out they have two replacements for me - which is good for them and makes it easier for me to train people instead of leaving lots of notes.

Yesterday I went to work where there has been a fair amount of stress going on as well. Also, I was out last week so we can just say I have piles of things to do. Then I had an appointment with the nurse practitioner in rheumatology. I had hoped for a quick appointment and a quick trip to the gym before getting my hair cut.

Instead I had a 45 minute wait to see the nurse practitioner - stuck in a waiting room with a giant flat screen tv focused on the bombings and then the federal court house had a scare and was evacuated so all the newscasters could do was conjecture about what was going on and patients and medical staff, kept asking questions. I could not ignore it.

Finally I met with the nurse practitioner and we talked about my tiny medical history before the bad news started. Methatrexate is not working well for me. I can't take the biologics that are TNFs - tumor necrosing factors. This means I will never be able to Humira, Enbrel, and that whole class of drugs.

There are still options available for me that are not the big names but they all involve needles. I have a real problem with needles. My husband said he would help. We will go meet with a nurse and get instructions at some point. (And then he told me last night he didn't really like needles either - I don't think he has a choice in this because I am not sure I can give myself injections.) But that will be next week and I am not worrying about it today.

The one advantage to injecting methotrexate instead of taking it orally is that it is easier on your digestive system. This is good because last night after taking my pills, including my weekly dose of methotrexate, my stomach turned into a giant knot and caused a lot of pain. So I ended my crappy day in the bathroom in a lot of pain.

I just have to get through today and then tomorrow I am going to play hooky with a friend. I need a day off.

Chemo again or just semantics?

I have been emailing back and forth with a friend with whom I had lost touch. His wife had died a few years ago of pancreatic cancer.  I told him that I had RA which is why I haven't been around as much recently. He replied that he has a friend who is on methotrexate - which is a form of chemo  for their RA.

Eeek! I had not considered that Methotrexate was a form of chemo. I take it in pill form weekly so its not like I go for an infusion or anything. I looked it up on Scott Hamilton's Chemocare.com and found out its true.

The thought of being on chemo again had always freaked me out. I mean who wants a port, baldness, and nausea again? But they snuck it in on me. They said it was for RA treatment, they never mentioned chemo. So I guess its easier to cope.

My mother was on methotrexate, at a lower dose than me, for years, and we never considered it to be chemo.

Which brings up a point. If a drug is used to treat cancer, they call it chemotherapy. But if the same drug is used to treat something else, can't we just call it a medication for rheumatoid so I don't have to think I am on chemo again? Doesn't it come down to semantics here?

Medications and me

Medications have a tendency not to agree with me. As a child back in the dark ages of the 1960s and 1970s, if I had strep or an ear infection, the local pediatrician would prescribe Penicillin, the miracle drug. At one point, I remember her saying that I had a sensitivity to  it which I promptly ignored because I was a teenager. I don't think my mother remembers that either..

When I was sixteen, I went on a summer program to Madrid, Spain to study at the University of Madrid. We stayed in a university dorm (with a bar on the ground floor, a convent on the first floor, and a dining hall on the second floor which made the world's best paella once a week at minimum). One day I wasn't feeling well, napped all afternoon, attempted to eat dinner but wasn't hungry and went to bed early. I woke up in the middle of the night with a need to use the bathroom and ended up passing out in the hall outside the chaperone's room. The doctor was called, accused me of using drugs (my little bottle of sudafed was deemed suspect) and found I had a temperature of 105. Their modern medine (this was just post-Franco Spain) was shots of penicillin in my behind twice a day. Some how I survived that with no reactions.

(They were very helpful in taking care of me by leaving a nun in my room 24/7 so I was never alone. The nuns only spoke Spanish - I think they wanted to make sure I didn't take any more contraband sudafed. With a temperature of 105 I couldn't speak a word of Spanish if I tried. I was also given everything at room temperature - so as not to shock my body. And each aspirin table needed to be cut into 6 little pieces and swallowed individually with a sip of warm, flat soda so I would not choke. I did get better after a few days and we never figured out what it was. But I digress.)

I never seemed to get strep or ear infections or anything requiring antibiotics for years (maybe I was really a  healthy person once.) Then in the 1990s I had dental infection and was prescribed penicillin which gave me a full body rash and hives. On a business trip... in Europe. I stopped taking the penicillin immediately and called my dentist when I was back in the US. So no more '-cillin' drugs for me.

Around 2001 I managed to ruin a perfect day of skiing with a tiny fall which resulted in a toboggan ride from some very nice ski patrol followed by crutches and knee surgery. A family friend, and former OR nurse, told me to take two of Vicodin that I had been prescribed the night after the surgery to ensure a good night's sleep. I was up all  night. So no more Vicodin or Tylenol 3 for me - we think its the codeine that causes the problem.

Then with chemo, I was given Benadryl to prevent an allergic reaction to the infusion. I was allergic to the Benadryl which means I really can't take any antihistamines ever.

Last Friday, my rheumatologist prescribed me Plaquenil and Prednisone for my RA. I was up all night from the Prednisone and stopped taking it. When I tried it again on Monday morning, I ended up with a bright red face and rash. We decided I should stop the prednisone for now and stick with the Plaquenil. As the week progressed, my rash progressed. It now covers my face, neck, upper chest, around the side of my torso and my arm pit (which is really the pits.) The suspicion is I might be allergic to both.

Our next step is when my rash goes away - in a week or two (according to the doctor) - she will put me on something else for my RA. I hope I am not allergic to that as well.