Autoimmune Disorders Are My New Normal


For many years I’ve had weird physical issues, swelling and pain in my hands & feet, abnormal fatigue, extremely cold feet at night which then turns into burning feet, rapid heart rate and shortness of breath, painful joints, right leg numb from the knee down and very low blood pressure. All of these symptoms have been sporadic over the past 20 years, never all at the same time.

I finally went and saw my doctor about the swelling and he ran blood tests. The test for Systemic Lupus Erythemous came back positive. So off to the Rheumatologist I went, and he ran more tests but the SLE test was negative this time, but the Sjogrens Syndrome was positive and Celiac Disease also positive.

Since this diagnosis combined with other severe stressors in life I feel like utter shit. All of the above symptoms have hit me at once and I’m not handling it well. Going to see the Rheumatologist again today to further discuss and hopefully start on some medications to help bring this “flare up” down and relieve some symptoms.

In all honesty I’m relieved and scared of these three diagnoses. Relieved to have a name to my bazaar symptoms, no more wondering. Yet horrified because this will be no walk in the park. I always thought my severe fatigue was depression related, which seemed to have been the logical answer. Doctor told me that I may notice a big change for the good with my energy levels as long as the medications do their job. Another reason I’m completely relieved, the possibility of having energy and no more fatigue…how fucking great is that?!

Yet the unknown is really making me panic a bit. There are other symptoms I may start developing and it’s really scary. One being the sun and exposure to it. The sun triggers a terrible rash apparently, I haven’t had that happen yet, but if I am in the sun for more than an hour it destroys my energy. So much so that I have to nap after being outside, the heat plays havoc on my blood pressure and then I’m beat red all over for weeks.

Part of the frustration with this is that SLE and Sjogrens are triggered by stress and emotions. Based on this finding, it’s caused my EMDR therapy to be halted. Can’t delve deep into my traumas for a while, therefore I’m quiet frustrated about all of this.

A few months back I applied for Social Security Disability because of the CPTSD, anxiety, panic, depression and hypervigilant state. I won’t know of the decision from SSI until July. Now if I was to add my new autoimmune diseases to the mix of the claim, it will push back the current application. Such a conundrum.

Praying that SSI approves my claim, praying that the medications do their job and suppress my symptoms, praying I can get back to my therapy and praying for enlightenment for all of this.

What does this mean for my future? What am I to be learning here about all of this? What are my next steps? So many questions and no answers. For an analyst like me…not having answers to see where this is going is brutal!

Thank God for my amazing friends who are available and willing to lend a hand. Gluten free recipes are coming left and right. God blessed me with an amazing support system and that alone makes this current “bump in the road” not seem so destructive on this old truck of a body.

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