Posted by: hockeygrl1 | February 27, 2011

Why me?

Today seems like a “Why me?” kind of day. I have the same lifestyle, hell a better lifestyle than some, but I have lupus and they don’t. Could I have been healthier? Sure, I think everyone has things they could do differently. I watched what I ate and exercised. In fact, just before I became seriously ill in October 2007, I was eating and exercising better than I had in years. I was losing weight. I guess this was both from my eating and exercise habits and the pancreatitis that wouldn’t let me keep food down, and looking good. It always seems like people are at a high point in their life when they’re struck down, doesn’t it?

Now, I’m going back down hill again. I’ve changed so much in my current life to try to adapt to my illness, like living with my parents so I have to do less, but it’s not helping. I’m not even leaving the house much anymore because with the pleurisy my lungs couldn’t handle an infection. It’s really a good thing I’m on SSD and not working. Cold and flu season would be hell at work. Everyone goes to work sick and if I’m around them, I’d get it. A simple infection can turn into something ugly with my suppressed immune system. So I sit at home; making jewelry and watching tv.

I’ve really had just about enough of it. This is definitely not where I saw myself being in my life the year of my 20 year class reunion. Hell, even 5 years ago, I thought I’d be working for some company, in their training department or HR, assessing, developing, designing, evaluating, and presenting learning to employees. I was even doing e-learning tools. It was a perfect fit for this introvert. Designing tools people can learn from without having to get up in front of them. God, I miss it.

See, that’s where the “Why me?” comes in. I could be just as successful in a career as anyone else. I worked hard, put in the extra hours, got a degree by going to night school, why not me moving up the corporate ladder? Or why not me running the 5k’s or doing the 3-Day any more? I was active; I trained for a year to do the 3-day. Walking 20-30 miles every weekend and 4-5 every week night. No it’s like my body has betrayed me. Instead of attacking the ‘bad’ cells, it’s attacking ‘all’ cells and making things fail.

It’s hyperactive. That’s one thing I’d like all of you to understand. Things that ‘boost’ your immune system are bad for me. It’s already on overdrive. All the medications I take (chemo, CellCept, Azathioprine, hydroxychloroquine) are to suppress the immune system. To get it to slow down and leave the healthy cells alone. But by doing this, it makes me able to get infections easier. Thus, I need to stay away from people. A simple cold could be pneumonia in no time.

Do I want to do more? Hell, yes! Ask anyone who has a disease, mental disability or physical disability and you’ll get the same answer. We feel like less of a person a lot of the time. I’m thankful that I can still get around easily and that my mind, for the most part, is clear. I do have bouts of the ‘lupus fog’ and will forget things, but I try to keep my brain sharp by reading and doing puzzles.

Still, “Why me?” Gretchen and Jason grew up in the same house as me and did the same things and are fine. Why did lupus pick me? Even comparing our lifestyles from teenage years to current, I’ve been healthier. (I cannot go into details) I go over things I’ve done and ate and places I’ve been and can’t understand why this would happen to me.

I guess I’m not alone in this since the doctors cannot even tell you why you get lupus. They cannot even cure it. They just treat the symptoms as best they can and even with doing that, it’s an unpredictable disease.

I do feel better knowing that others are having as tough a time of it as I am. The online community is wonderful. It helps me when people come to me and say, “I know ____ who has lupus and they are working and feeling just fine.” You know the tone. Like you should be able to work to. I read other peoples stories and see that lupus effects everyone differently and some of us cannot work while some of it is going on. The stories and people who I’ve met online have also taught me ways to deal with these people or at least given me someone to talk to about them.

The sad thing is, the most hurtful words come from my own family. They seem to understand my disease the least even though I’ve shared plenty of information with them about the disease. My sister has a thyroid issue and is better with medication and I guess she thinks “well Ann is on medicine she should feel better.” It’s not true. My medications are just making my kidneys work, my blood pressure lower and my joints ache less. It is not ‘fixing’ me. That says nothing about the exhaustion. There is nothing to treat that.

I guess I’ll end with saying there is no answer to the question. I just need to do what is best for me and hope everything will fall into place.


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