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21 October 2007

Finally...

I got off my tushie and did something with the layout of this blog. I don't update that often. I also don't post often but...what's a gimp girl to do? Some days, I have lots to say but no energy to say it. Others, I have the desire to write but nothing to say!

It's been an interesting start to fall here. Bastian's first year of school is going well. He loves it. He's learning pretty fast. His math skills shock me at times because it seems so effortless to him. And his reading is growing. They have nightly homework, even in kindergarten. In addition to that, they have a bring home book to read every night. We've stopped reading them to him pretty much. Usually, we all three curl up on the couch together and he reads it to us. Gar's work is well work. Typical stuff.

I'm having the usual ups and downs of chronic illness. You'd think after 23 years of it, I'd be used to the fatigue. Not a chance. If it weren't for the fatigue, I might be much better off. I still have pain, don't get me wrong. I still have joint damage and it's never going away. But, because pain is such a normal thing for me, it's nothing to complain overly much about. When just folding a couple of baskets of laundry wears me out, you know fatigue is a major problem. I also still have limited ROM but have gotten used to that. Had my periodic check up with the rheumy. I'm now on an every 6 weeks schedule. And we're possibly switching from using the infusion company to getting them done in office. My rheumy has an infusion nurse who is there and stable. Before, it was decided to go with the infusion company to get me started since they're office was having difficulty keeping nurses and the patients they had already established on infusions were having a hard time scheduling them let alone scheduling a new patient.

Pretty routine appts lately. In fact, all we did this time was the usual lab work and changed my Remicade to every 6 weeks instead of every 8 weeks. It helps more than any of the other biologics I've been on. Except, it was definitely wearing off around the 5-6 week mark. So, the doc said let's move the frequency. Getting the lab work was the worst of the visit. I normally have no problems with labs once the tech finds a vein to get. The veins in the crook of both of my elbows though are tricky to get. They like to hide and roll. Part of that is due to scar tissue from having so many blood draws. Having RA leads to needing to visit the "vampires" a lot! Precautionary stuff due to meds as well as some docs use certain measures in lab work to determine if a medication is working. Some patients, that's not a valid tool as they're labs don't accurately reflect things. I'm one of them. According to my blood work, I don't have RA! I haven't checked recently (been very trusting of my doc) to see if my ESR is elevated. I know my WBC is. But, there are two reasons why and infection is NOT one. One is that I am on prednisone. It can elevate the WBC. The other reason is any inflammation in the body can also raise the WBC. So lucky me. The first ER visit I had this year , it seemed to shock the doc when he told me mine was high and I dismissed it saying "I'm on pred and I have inflammation"...apparently he was going to explain to stupid lil me that that could do it. I've not lived with RA for 23 years to NOT know about it in general and more importantly, its effects on my body. I know how I react to things. So, now when someone other than my rheumy orders labs, I just tell them to expect an elevated WBC, and possibly elevated ESR and CRP if they're running those.

I am not sure if I posted this and I'm too lazy to go back and look...but I had a second RFA on my right lumbar spine on Oct 3. It seems to have helped. The area he worked on hurts less but of course, like with the blocks and the other RFAs, everywhere around the area is more sensitive. Especially right above the highest nerve he burnt. It's a dull ache...almost like a kidney infection ache. Annoying to be sure. But, tolerable. I'm going to be scheduling the left side when I see the NP on Nov 1st. Aside from scheduling that, it should be a routine visit as well. Just a monthly check up on how I am doing. Script pick up as well. I like that my pain clinic does not issue pain meds without seeing you monthly.

I'm still fighting disability. I received another denial back in July/August and appealed. That appeal means asking for a hearing. It takes approximately 12-18 months (with 16 months being the average for this district) to even hear a yes or no and then there is a wait for the hearing. So, I do not expect to know anything until after the first of the year if not summer. I'm fortunate that my husband's job has decent insurance and that my doctors are willing to let me pay as slow as I can on things. I've got almost all of my meds as generics. Only three are name brands which helps greatly. As does the fact that Remicade is extremely expensive which causes me to hit my out of pocket maximum for the year pretty early with my 20% co-insurance. Of course co-pays on visits don't count toward that max. And with my pain doc, they're deal with the insurance company and their charges for monthly visits makes it to where each time I pay my co-pay, there's a bit left over. So that helps me with my co-insurance but doesn't go toward that out of pocket. With Remicade, it's over $7000 a treatment. Now, that does hurt a lot! Needless to say, it's no wonder I hit that max the end of August this year.

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