Sunday 6 February 2011


recently in the last few days I have been noticing something different about my body. I am beginning to think perhaps my doctors and I are wrong and instead of having an allergy to nightshade foods, perhaps its actually worse, maybe it’s actually IBS.

Now I'm not one to panic and run to the worst possible scenario, but I have been noticing the symptoms actually getting worse. I thought "hey maybe it’s a gluten allergy", but many of the foods I eat are gluten free, as I had gotten in the habit of purchasing gluten free because of my dad’s diet habits (he’s Rastafarian and mostly vegetarian)., Now I'm trying to think if I have changed anything in my diet, did I eat anything different? Drink anything different?

The only things I can think of is I went to target and had a small icee, could that be it?? This has never happened before that I recall (but then again we have established that as a lupus patient I sometimes suffer from the fog and sometimes forget what I just did five minutes ago). Then there are the grapes, those are the only other things I have had recently, maybe it was the subway sandwich? but I only got the regular stuff and never had this problem before.

Since it’s only been a few days since the symptoms have actually gotten worse, I'm going to do a diary entry of all the foods I'm eating everything, if it passes my lips then it gets written down, and I m going to watch and see, if the symptoms fon’t ease up, I might have to call my rhemotologist to come in sooner than my actual appointment.

I'm panicking because each time I think I have a handle on how my body is working it changes, and you would think I would get use to the changes, but I'm not.  Each drastic and scary changes brings with it the grieving process again, as I grieve the loss of another body system to this disease. I tell myself, don’t panic, be thankfully that it’s not as bad as the other’s in the therapy group I sometimes go to, or as bad as the young women who blog about their experiences, but I'm not thankful. I'm Fucking Pissed.  Why am I losing control even though I'm doing all I'm supposed to? Even with medical knowledge of how the disease advances and changes, I'm still in the mode of patient, and this shyt sucks big time. I had just been celebrating because I have had the most awesome time being in the longest of remissions and boom, something new crops up. This is BS.

Now I have a mode of action mapped out all I have to do is watch my food over the next few days. Im just praying its not IBS, I really can't deal with another problem on top of the others I already have, Yes Im grateful Im not as advanced as so many others, but Im happy with what I have I DON'T want it to change. I'm comfortable here I know what needs to be done and I can do this by rote now, this constant change shyt is not working for me. I want my life to be about more than worrying about where the hell the nearest bathroom is, and what is going to trigger an episode. I want to PRETEND to be "NORMAL"
Le Sigh, I know I'm 'normal' but when I have my disease under control I can pretend it doesn't exist too much, but each new symptom forces you to re-evaluate your grasp on your life and your goals, and give up something else to the disease. I want to have regular worries, regular 28 year old issues, about career, love and family, not worry about if my advanced directives are in the right hands, did I include the new big purchase in the will, are my meds all right. thats supposed to be when Im older, you know after I have had a good long life, and Im in my 90s or with the Goddess' blessing my 100s.
UGH the life a chronic disease sufferer, is no fun at all.
Sorry to vent, but if I don't talk about it here, who else will i talk to? No need to send anyone else in a panic, until we know what we're dealing with. Anyway thanks for reading(listening)
Be Blessed and Healthy or strong enough to deal with your issues, my loves


  1. Hang in there, Aisha..sending love and healing energy your way.. I believe in you :)

  2. @Kallan, thank you, Im going to need it. Be Blessed and thank you for all you do.

  3. Interesting... Over the last few days my panic has increased as well. I went to a TARGET too and had a Tazo Tea with Honey... I thought for sure that was it. Perhaps it's panic season? Hang in there, you'll narrow it down, sending healing thoughts your way.


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