Chronic Illness and Mast Cells

I Hate Waking Up Like This

At 3:45 am this morning, I woke startled with a sense of panic. I woke with my heart pounding in my chest, ears ringing, slight shortness of breath, flushing, sweating, and the weird: I feel hot and cold at the same time with chills. I am boiling with heartburn and cramping in my abdomen. When I first awoke and before I opened my eyes I saw flashing lights and weird sensations in my head. It is hard to describe. It’s very unpleasant sort of like your moving but your not because you are lying still in bed. I’ve taken an extra Zantac (ranitidine). I am wide awake and cannot get back to sleep, so I am using the opportunity to write this blog post. I had a followup with my PCP yesterday. MRI of brain was normal. EEG showed some abnormal things so I am waiting to see a neurologist. So far have not been able to get an appointment that is not 7 months out. So my doctor’s office is sending out a referral to another neurology group further out that may be able to see me sooner. I didn’t feel great when I left from my appointment. I’ve surpassed being able to think things through and ask all the questions I have. I just feel so bad with fatigue and pain. And the swelling, I am so weary fighting the swelling and the allergic reactions. The idea of a Pet Scan came up, but my docotor says insurance won’t pay for it. Ugggghhh…. I asked how much and he stated thousands. I asked how many thousands and he said he didn’t know. Well, to me this is no reason to not order one. I have mast cell activation, swelling lymph nodes, leukocytosis, and worsening uncontrolled angioedema. Now findings on a EEG possible from Intracranial Lesions, a cyst in the Nasopharynx being ignored that has not been biopsied. And 12th cranial nerve palsy with no idea what has caused it. I think I need more imaging. I don’t feel that enough is being done to get to the bottom of things, and I feel somewhat on my on with forming a plan, looking at he whole picture and getting to the bottom of things. After my appointment, my husband met me and we went grocery shopping. By we, I mean I rode and sat in the car, gave him a list of things to get at Costco. He was only able to get a few things because people had wiped the shelves out on certain food items, and they had no toilet paper or paper towels. Panic has set in over the coronavirus. We then went to Walmart, similar senario. Then went to pharmacy to pick up my meds. The cherry on top was finding out that as of the end of feb. we have no insurance because my husbands employer waiting till it expired instead of continuing wiht the plan and having things in place where there would be no lapse. So one of my medications I had to pay out of pocket for. Thankfully there was a discount card. But I’m not going to be able to pay for all my medications this way. And even better, my doctors appointment I just had will not be covered. And we found this out when we went to the pharmacy. The cherry on top of my day. To say that I am upset and frustrated is a gross understatement.

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