A couple more complications

This last month I haven’t really known how to write about what has gone on. As I add more doctors and medications to my life, things become more complicated.

I keep hearing the constant, “You look great, so you must be doing well.” I’m not. It’s all so very hard to explain to people. I do appreciate the you look great bit, but I feel like crap.

This last week I learned that a medication I had been put on in March to help with a digestive problem has counter indications with one of my lupus meds (Arava)¬†I was finally able to start again in April. It’s actually the medicine they give to people to flush Arava out of their system, so I was wasting my time AND money every day.

img_0212I cannot stop taking the digestive medicine, because they figured out the problem was that I had my gallbladder removed 11 years ago, so I need something to collect and process all of the bile in my body. Now I need new medicine for my lupus, so I can spend a whole day out of bed and my hair will stop falling out again.

I have gone through many of the pill options for lupus, and I haven’t had any good results until I took Arava, but now I can’t take that one any more. Now my doc is trying to get me approved for one of the IV meds. This one is Benlysta, and is the first drug in history specifically made for lupus. If I get approved, we’ll see how I do…

Until then I will take a ridiculous number of naps, and I will be self-conscious again about my loss of hair. Maybe I’ll just wear hats all summer.

All of this is just the tip of the iceberg of my medical soap opera, but to go into all of the details, and to name all of the types of doctors I see is just depressing. The best news I’ve heard in the last couple of months from any of them is that I don’t have cancer, and I’m not allergic to gluten. The worst news was that my left lung is permanently scarred by my bouts of pneumonia this last year. I guess that’s not too bad compared to some things I’ve been told in the last few years.

I have also been applying for jobs, but it doesn’t seem like anyone wants a web developer who has been out of work for any amount of time to come knocking at their door. Of course, if you talk to anyone who has stayed at home with their kids, for an illness, or any other reason, they will tell you the same thing, so I guess the industry doesn’t really matter. I’m just a bit frustrated now. I will keep my deep breathing going, and if that doesn’t work, I’ll just bite the bullet and work for myself again.

For now I will enjoy these few weeks I have with my kids this summer before they go back to school, and we shall see how things go with my medication saga.


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