Lupus is a minor inconvenience……

…sometimes and sometimes it can be the most devastating aspect of my life. My rheumatoid arthritis is rearing it’s ugly head today. Right now, I feel so sad. I feel depressed. I feel anxious. I feel sick to my stomach. I am inconsolable. I feel full. There are tears welled up in my eyes. My back hurts. My neck hurts. My legs are sore. My hair is falling out. I am fatigued. I am sleepy. My fingers are sore, thank God they’re not swollen today. I feel like my body is falling apart, like in that silly movie “Death Becomes Her”. 

My hair is VERY important to me and always has been. When it first started thinning, I didn’t let it bother me so much. My husband was surprised, as was I, that I was taking it so well. Well, today as I was flat ironing my hair and I see how much further my hair has thinned I am taken aback. I’m not sure if I can handle it so well this time.

For the last few years I have been able to “grin and bear it”, the pain that is. I have been consoled by the fact that although I felt like shit, I looked good and no one could tell that I was sick. I didn’t hide my illness. I just didn’t tell everyone because I didn’t want anyone feeling sorry for me or treating me differently. Well guess what? I need to be treated differently. I don’t have the same stamina that many women my age have. I cannot walk long distances sometimes and it’s not because of my shoes (I wear heels the majority of the time, my Steve Madden gym shoes even have a heel). Flats make my shins hurt because I’m not used to working the muscles used when wearing flat shoes.

I am trying to live my life one day at a time. Most days I feel blessed that my kidneys are not involved in my illness right now. My nephrologist, Dr. Keith Bellovich, is the greatest doctor. He tells me that I am very lucky that I am in the condition that I am in right now. This condition can probably be attributed to my eating and excercise habits. I normally don’t eat garbage, and I walk a lot, go swimming, rollerskate, and play tennis. All of these activities take my breath away and I usually have to take a break every 25-30 minutes, lest I pass the hell out!

I don’t even know where I’m going with all of this. I guess I just wanted to put what I’m feeling, no matter how nonsensical it sounds, into writing. I’m all over the place with my thoughts and this is because my feelings and body aches are all over the place. There is no rhyme or reason to what my body does. It is attacking me. I am not the enemy. Lupus is.

3 responses to “Lupus is a minor inconvenience……

  1. Sweetness I hope you feel a lot better soon. My favorite uncle had lupus and a good friends mother as well so I know (from the outside looking in) what a toll it can put on you. I will keep you always in my prayers Nette…stay strong momma ! It can’t win !

  2. autoimmunelife

    I’m sorry to hear about your hair – I had a hard time when it first started coming out, but then it seemed to go back to just the normal amount coming out – looking at it now – I can tell I’ve been slowly losing it over the past six months – its had me in tears on more than one occasion lately. 😦 If I find something that helps I’ll let you know.

  3. I have a friend and a cousin that had lupus so I see the pain that they go thru as well….and the medication they are on doesn’t really help….I’ll keep you in my prayers….take care….GB_OPD

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