Lupus and I

It’s been a long time since I’ve blogged. I’ve been on another leave of absence since mid September. I was at work one morning and didn’t feel well. I was extremely hot so I turned on my little fan at work. This was first thing in the morning. One of the nurses that I work with kept asking if I was okay. Most times when anyone asks me how I feel, no matter how bad it is, I will say, “okay.” It’s easier than listing everything that doesn’t feel right, especially when everyday is basically the same thing. I’m sure they really don’t want to hear it and I get tired of talking or even thinking about it. It’s also difficult for me to explain. I figured it would pass and it wasn’t a big deal. She finally convinced me to come with her to check my vitals. My pulse and blood pressure were high. She ended up calling my doctor over from next door and he ordered an EKG and stat labs. On the way down to the lab (after the EKG), my doctor caught up to us and said, “I know how you feel about the ER but I suggest you go there instead of the lab. There are changes in your EKG that are worrisome.”‘ I ended up getting admitted again (the 4th time in 9 months). This time it was a little bit different since it had to do with my heart. Something I never thought I had to worry much about. My Potassium was super low which is very dangerous and the changes in my EKG. My Cardiologist wanted me to be admitted until we could do a treadmill test (I can’t remember what it was called). I was released after that (the next day) and my doctor wanted me to stay out for a few months. I still am not sure what made it so serious that I had to stay out. Yet I was grateful because during this time, among other things, I had trouble breathing, strange heart beats, and now pain in my stomach and lower intestines (or at least that area) and a lot of throwing up. The pain and nausea started about 1 1/2- 2 months ago. On the 23rd, I had an Endoscopy. Everything looked fine. I was a little disappointed. Not because I want yet another thing to be wrong with me, I just wanted it to be fixed. On the 31st I have an Ultrasound scheduled. My liver enzymes more than doubled on my last blood test so my doctor wants to just make sure everything is okay. He said that he believes the test will come back fine.

During my last visit with my Rheumatologist, I explained in detail how the fatigue affects my life. For over 13 years I have told  my doctors and specialists about how I’m so tired but they have never done anything about it. Only saying, “It’s the Lupus.” I’m tired of being dismissed with that. His master plan was to rule out sleep apnea and wanted to see me again after that. It took about 5 months to see the sleep specialist only to find out it was a consultation. The good thing was the actual test was about a week later. My follow up appointment to go over the results will be in the second week of January. A total of 7 months. I know I’ve been living with this for a long time but sometimes it’s worse and I’m just over the fatigue already. I’m over a lot of things.

When I went through a major flare the first time around, I thought I knew what Lupus was all about and how cruel and unpredictable it is. Now I feel like that time was a walk in the park. I always thought that kidney failure was what I needed to worry about. Now I have to worry about my heart. And now that it feels like I get diagnosed with something new or have new problems every couple of months, I am beyond frustrated and at times afraid. I know that I’m not weak yet I feel like I can’t deal with this anymore. I tell myself that other people have it worse and that I should be grateful, strong, and deal with it. I am frustrated because I wonder if we’ll ever figure out what’s wrong with my “stomach.” I wonder how long this flare will last; what other organs my Lupus will affect. I thought I would be better way before December. It’s been over a year. I don’t remember how long my flare lasted the first time around but I also wasn’t hearing bad news out of the blue when it doesn’t feel like anything is very different than it usually is. Several people have told me recently that I look good. Better. I’m not sure if this is supposed to make me happy. All I know is that I wish that the outside was a mirror of what is happening on the inside. I’m polite though and say, “thank you.”

I haven’t been hungry for a long time and rarely eat. Most times I forget to do so. I’ve never been a fan of food as I’m very picky. In the last week I’ve been trying to eat at least once a day. However I still haven’t lost much of the weight I gained from the Prednisone. Except maybe the “moon face.”

I didn’t know that I had Fibromyalgia too. I figured that Lupus was very similar to Fibromyalgia anyway but my PCP told me on our last visit that I have both. Everything has also affected my emotions/ mood. I’m sure you guys know what I’m talking about. I know I mentioned it, but I don’t feel like talking about it right now. Sometimes I think it’s so crazy how autoimmune diseases are invisible but wreak so much havoc on one’s body. Not only do we have to live and deal with all of this but because no one else can see it, it’s easy for them to not believe you, think everything is okay because you “look better” or don’t “look sick.” I feel like the only time I’m believed is when someone else in the medical profession sees the extensive list of medication that I am on and my health issues. It’s like adding insult to injury when someone who has no idea says something ignorant and hurtful.

I was trying to work more on my business, hoping that maybe if I did well enough, that I wouldn’t have to go back to work. I love my job but sometimes feel that being able to create my own hours would be best for me at this time.  But sometimes I can’t manage to do anything at all. I know that no matter what, I need to go back to work on my scheduled date on January 18th. If not, I’m afraid that I will lose my job. I think that I worry too much about everything. I would be very disappointed if I have to cut down my hours (which would entail applying for a new position), hopefully in the same company, if they give it to me despite my health issues this past year.