Health Update

Here is an update from my UPDATE POST LAST WEEK. So, I left off on Tuesday after emailing my doctor. By Wednesday morning I hadn't heard back from him, which I found odd because he always responds almost immediately with any medical questions. I emailed again Wednesday morning, and by afternoon I decided to call the office. The secretary gave me a different email address to contact him to let him know that I had emailed him through NEXT MD without a response. Well, there must have been some sort of system error because by the time I got home from work I had a message from him. He said to stop the medication immediately and call the office to get scheduled for an appointment with him ASAP. I called on Thursday morning and they got me in the same day-3:15. I left work at 11 to give myself plenty of time and Anand met me there. I was (and still am) really tired and just not feeling well.

The doctor came in and told me that the oral medications were not working for me, so he wants to start me on Remicade infusions. I asked lots of questions. My biggest concern is that since I've been on two different medications and I have felt horrible. Other than my eye flaring up, I felt really good prior to starting these medications. I seriously started contemplating if it's worth treating-I mean, if I feel horrible all the time, is it worth it? Of course I don't want to go blind-and I have been told that I will absolutely go blind if this disease is left untreated (along with the disease attacking my other mucous membranes). It could be a year from now or it could be 10 years from now, but it's a definite. So, they need to get my immune system under control. But, if the first medications were making me feel so horrible, what would infusing a drug directly into my system do? I have been scared of infusions from day one. I asked if I should expect that I will feel some sort of "horrible" for the duration of treatment. The doctor told me that once they find the "right drug" for me, I will feel "pretty normal" without the fatigue & nausea. All of these immune-suppressing drugs have the same side effects, but everyone reacts differently to them. When I started feeling side effects, I figured I could expect to feel some sort of awful since I was putting drugs into my system. So, I was kind of scared to tell the doctor since I figured the next medication could be worse than the one I was already on. Not to mention that I am so scared of having infusions. I'm not really sure why other than when I think "infusion", the thought of pumping toxins directly into my veins just scares me. I guess it's the unknown. So, I found myself looking at all of the people who were receiving infusion treatments the day I was there-checking to see if they looked sick or not.

They need to get prior authorization from my insurance company and will start me on infusions once that is authorized. Apparently, my insurance company has a reputation for denying this treatment, so they are prepared to file appeals. It may take a while to get authorization, but the office has told me they will take care of everything and not to stress about it. So, for now, I am medication-free until the infusions start! I am still feeling the effects of the medication, but hope that I will get at least a little time of feeling good before I start the next phase of treatment. I had to have testing done prior to starting the treatment-I did that on Friday & yesterday, so now it's just waiting on the insurance company. I am scheduled for an appointment on Friday, May 17, but not sure that will happen.

In good news, I only have one month from today left at work! I am definitely excited and looking forward to June 7! I debated leaving a bit earlier due to everything going on with my health. I am only working 2-3 days a week pretty much at this point anyway. But, I want to leave on my terms-control something that I am able to. So, June 7 it is!