One Big Blessing

WARNING: This post is VERY lengthy. Grab your tea and a comfy cushion.

With the above said, I'll just dive right in. I haven't posted since my last whine about my RD (rheumatologist) appointment in May and so much has happened since.

I saw my RD again on July 7, and we decided to give Orencia a try if I could somehow cover the outrageous cost. He told me he would use my symptoms, x-rays, joint count, and ADL score to convince my insurance company to cover the medication. I'm not sure how he did it, but they agreed to cover the drug and infusions after I meet my deductible. Since each infusion, even at the insurance company's discounted rate would be more than $600, I would have met my $2,500 deductible by September. But, since I have to have three infusions two weeks apart (and then monthly), that would be pretty much impossible to come up with. Bristol-Meyers Squib, the manufacturer of Orencia, is going to pay for the cost of the drug (not the cost of the infusion itself) minus $50 per infusion up to $5,000 per year. That leaves me to pay $264 per infusion until my deductible is met. That is difficult, but I'm doing it.

I had my first infusion on July 19. I was a little nervous about side effects because I simply don't have time to be down for even a day. I went to my doctor's office for my infusion. They put me in a great big comfy recliner, started an IV, infused the drug, gave me crackers and ginger ale, and took my vitals 3 times. The actual infusion took 30 minutes and I had to wait another 30 for my post-infusion vitals. I had no side effects whatsoever. How beautiful is that? The nurse called the next day, although I missed the call, to see how I was feeling. I was treated pretty good. I'm scheduled again for Aug. 2, Aug. 16 and Sept. 16. I'll also be seeing my RD again on the 16th, which is convenient.

I was told to expect the drug to take up to 8 months to work. Orencia is quite different from other RA biological drugs and is kind of a slow-poke. I read somewhere online that RA is like a running faucet. Other drugs dry up the puddle, but Orencia turns off the faucet. While other drugs control the symptoms (puddle) quicker, with Orencia, it can take time for the puddle to dry up. I'm willing to wait. I've been waiting for control of this disease for more than 5 years. I have a lot of hope and quite a bit of faith in my RD and in Orencia, so we'll see how it goes.

It's funny when you read the warnings for drugs and they make it sound like nobody should take them. If you've ever been pregnant, have hair on your head, like chocolate chip cookies, have more than 7 fingers, blah, blah, blah, you should not take (insert any drug name here). I guess it is good that I tend to ignore most of those warnings now. I've taken almost everything there is to take and I'm still breathing.

I had planned to have my thumb joint replacement this summer, while work is a little slower. And, I'd also planned to have the revision surgery on my elbow. But, my vice president at the university where I'm employed decided to send me to school 50 miles away, two days a week, for 11 weeks, to take a web design class. When I started my graphic design career, there were no computers. So, I guess I do need to learn this, and they are making an investment in me. I'm doing well and enjoying the class, but it has caused quite a few overtime hours to complete projects I would have had no problem completing during working hours. I do have my own .com address for my jewelry business (thanks to my son), so I'll be able to design and maintain my own site.

I'm so much of a perfectionist that I graduated from college with a 4.0 and am finding that I have not changed. I'm determined to get an "A" in this web class. When I attended college before, I did not have RA, and I had a much sharper mind. But, RA has taught me to be fierce, too keep pushing when all I want to do is lie down and just STOP.

My daughter moved back in and we've been rearranging the house again to give her some space of her own. I'm so glad to have my girl home with me again, though. She has been too far away for too long.

With all that is going on, I am very tired and in a continual flare. I'm eating narcotics like candy and putting on my fake smile. I'm getting through and getting by the best I can. Sometimes, I feel I'm walking right up to the edge of a cliff and looking down. One little misstep and I'll plunge into a rocky crevasse and that will be the end. I'll be putting on my brave face again in the morning and looking away from that cliff. I'm going to pretend it isn't there and try to enjoy the minutes, the hours, the days, even if they are filled with pain that doesn't stop and worries that would keep me from sleeping if I weren't so tired. I have a picture in my head. My RD is a knight riding his grand white steed, Orencia, and they are coming to save me. Beware RA dragon, beware.

Insurance Isn't What It's Supposed To Be

I saw my rheumatologist yesterday. What I thought would be a fairly "easy" appointment has me angry, upset and confused. Since I stopped methotrexate a couple of years ago, I've been getting by with only plaquenil, etodolac, prednisone and pain medication. My RD has been wanting me to restart the methotrexate, but I have refused. It made me feel sick and so tired all the time, that I'd rather have the joint pain and the eventual disfigurement. He has not been happy with my use of prednisone and would at least like to get my dose down to 5mg. I've tried numerous times with horribly painful consequences. I will have to have to add another DMARD to be able to manage a taper.

Yesterday, they took x-rays of my hands and feet and did the normal blood work. If the x-rays are good, he is giving me the choice of Arava, Remicade or Orencia. He prefers Orencia. He says that it has a lower risk of infection than the other biologic drugs. Since I don't have a spleen to fight infection, that is a very important factor. That has been the reason he has not started me on biologics. We had discussed Arava before, but he says that it is more liver toxic then they believed it to be. If my x-rays are not good, he says he will prescribe Orencia.

I've been researching all three drugs and checked this morning with my insurance company. The only one of the three drugs they cover is Arava. There is no way I could possibly afford Orencia or Remicade on my tiny salary. They likely cost more than I make.

I am so angry about the amount of money that is paid to my insurance company and that my deductible is so high that I may as well not have insurance. I'm angry that the medicine that my doctor believes I NEED is not covered. They are dooming me to a life of continued pain, disability and eventual disfigurement.

I am angry too, at the drug manufacturers that make these drugs unavailable to so many people.

I guess I will have to "choose" Arava and hope for the best. I've not had the best track record as far as tolerating medication.

Yesterday, my doctor also switched my Etodolac for Dolobid and my Salagen for Evoxac. I expect the change in anti-inflammatory will give me a short-lived decrease in problems. Whenever I start a new anti-inflammatory, I think, I feel great! But they always decline in their effectiveness over a few months. Maybe I'll get a more comfortable summer out of the switch though.

I hope that your insurance company actually "cares" for your health and that sometime in the near future (before it is too late), I'll find a treatment that is within my reach. I would have never thought I'd find myself in this situation. I really believed that with insurance came peace of mind. It is a terrible reality that I don't have that peace any more.

A Brand New Adventure

I've been very busy with a new adventure. I've just opened an Etsy shop and am having a great time interacting with other artists/craftspeople. I've only had one sale, so I haven't realized a lot of success yet, but I have confidence. I've been trying to fill up my shop and I have so many ideas.

It has been hard on my poor hands with all the new crafting activity, but overall I think it has been a great benefit. Since I gave up my music-making, I haven't had anything this fulfilling for several years. It is nice to have my own "business" going. I can run things as I want and pursue my own vision. I have to say thank you to my beautiful daughter for suggesting I do this.

I hope you will visit my shop and see what I've been up to. I have been listing lots of simple things to fill up the shop. In the future there will be lots more "creative" stuff there. I have listed iPod/iPhone cases, medicine bags, amulet bags and lots of simple dangle earrings.

The address is: http://www.etsy.com/shop/everybeadofmyart

More of the same with a slice of something new

Even when you think you are used to Rheumatoid Arthritis, and know your own body, they play sneaky little tricks on you. Though I've had five years of experience with this disease, I've struggled recently with a new problem and lots of the same old ones.

I decided to try again to taper my prednisone again. I knew, from my last attempt, that I should try to lower my dose by half a mg, and lower it every few weeks. I started my new dose and in a matter of a week, the heel of my left foot went completely numb. Over the last few weeks, my ankles had been my RA battlefield. They hurt all the time. They hadn't been swollen every day, but I knew that sometimes swelling isn't obvious. Yesterday they were noticeably swollen, and the numbness had extended to the top of my foot.

I gave up my prednisone taper today and bumped up to a higher than normal dose. I thought I'd feel much better today, but everything hurts. My ankles (and fingers and elbows) are swollen, and my foot is still numb. I'm going to continue the higher dose for a few days and go back to my old "prescribed" dose when I'm doing better.

I guess my rheumatologist is right and I need a new DMARD to get this disease under control. I hate taking all these drugs. I wonder if they are really doing anything at all (except the prednisone). I know that my toes are not all pointing in the right direction. I need a new thumb joint, and a bunionectomy. And, what is going on inside these swollen, painful joints. Will there be more joint replacements to come?

I don't want to deal with BOTH the damage this disease does to your body and the effects of the crazy drugs you have to take to live with it. If I could find a drug that would stop the damage, I'd want it bad. But, as I mentioned, I've had this disease for five years and am still trying (along with a good team of doctors) to find the right treatment for me.

Things aren't all gloomy, and I'm glad. I have a job that I love, even though it can be hard and stressful at times (well, maybe most of the time). I have a wonderful family, a home of my own and some wonderful furry friends.

I guess the biggest mood booster this week is the weather. Gone (for now), are the frigid temperatures and ice covered everything. It is supposed to be in the 60s tomorrow. You can't ask for better than that mid-February.

Goodbye socks and hose and shoes with toes! Come on spring . . . go away RA!

One not too good day, please. Oh, and with extra AAACK!

I think I must have woken up today and decided that this was going to be an even worse day than yesterday. If I weren't in the midst of a personal mental/emotional crisis, I would elaborate.

I will spill all (or mostly) later just to make myself feel better. I think I'll just start my next post with Why?

Maybe your imagination can make my reality seem minor, although I doubt it.

I hope your day, your week and your Thanksgiving are much happier than mine was, is or will be.

Oh the week from . . . it rhymes with bell

I can thank RA and Sjorgren's syndrome for some awful tooth decay. Dry mouth is not a minor problem, for sure. Over the weekend a rotten tooth turned nasty on me. I have been putting up with a couple of fairly useless teeth to avoid the cost of having them extracted. I guess that wasn't a good idea. Now I have endure this toothache and wait until Thursday to have it yanked. Of course I can't be off from work that long, so I trudge on.

I didn't really think I had allergies, but I seem to develop a sinus infection around this time of year, and you guessed it, now is the time. At least one round of cephalexin can take care of both the infection and the tooth extraction, but I feel lousy. Or, well, I guess lousier.

My son called me at work this morning and let me know he'd had an accident out of town. We had heavy rain all day today and I don't drive well in rain and I don't see well in rain. I went round and round, asked directions 3 times and finally made what should have been a 30 minute trip in about 3 hours (maybe a little less). He had spun out on an exit ramp and took out a light pole. His car will have to be towed and may not be worth fixing. I guess we'll hope for the best.

One very bright spot is getting back in touch with one of my two neices that I have not seen in several years. She seems to have grown to be a remarkable woman with a beautiful family. It has brought back a lot of good memories for me. I hope it has for her. I did lots of things with them when they were small and I'm glad that I did. My brother died when they were very young and I wanted to keep them a part of our family too. Almost everything I did with my own children, I did with them. I hope they both know that I think about them often and I am so happy that they are doing well.

Life is busy for us all, but with the advent of Facebook, it is easy to keep in touch and share everyday things. The everyday things are really more important than the events in life. There are many more of them and they truly shape who we are.

Life is certainly a challenge daily. We go up, and then down. We soar and then we crash. We live and then, we die. I'm doing my best to focus on the soaring part, but darn it is hard. If I can't get all the crashes off my schedule soon, I may just be too tired for soaring.

I'm turning on the heated matress pad tonight and cuddling up with a good book. I doubt I'll get very far, but I need just one little pleasure to end the day.

It's My Beeswax

I saw my rheumatologist yesterday. My appointment was scheduled for 10:30 a.m. After seeing the doc (11:30) and having my labs done I made it home at 3:30, a whole hour before my quitting time at work.

Today I had several people comment on the fact that I was out for the entire day. I'm sure they don't realize that my rheumatologist appointments are not the same as the usual doctor appointment. For one, my rheumatologist is 45 minutes away. Not because I chose to see someone out-of-town. There are no rheumatologists in my small town. For another, a rheumatologist appointment always includes lab tests which entails another wait at the lab. My appointment often also include xrays, joint injections and DEXA scans.

If my appointment had been in the afternoon, I could have taken a half day from work, but then I'd have to also take time the next day, to go to the lab. I'd have another 1 1/2 hours of driving and that would mean another half day from work. So, no difference in sick leave used. I usually try to scheudule my appointments at a convenient time, but I'll get a letter in the mail a month or so later, letting me know that my appointment has been rescheduled. So, I am at the mercy of the appointment lady. I take what I can get, because I desperately need to see my rheumatologist.

I am definitely not a malingerer or misusing sick leave. I have worked with broken ribs, with splints on my thumbs & wrists, drug side effects, and with daily pain that would have those whiners at home crying out for Jesus.

I am pissed that I feel I have to defend my use of sick time, or to explain it at all. It is my business.

As it turns out, I'm still working on yesterday's appointment. The doctor goofed on a couple of my prescriptions and so now I'm caught between the pharmacy and the busy doctor's office to get it all straightened out. Of course that is time consuming, head-warping and not too much fun too.

On a good note, the changes in my prescriptions and some other recommendations he made should have me feeling better by the weekend.

I guess I'll be posting again soon about the wonders/evils of prednisone.