Rolling with resistance

Yesterday my world collapsed, and yet everything is where it needs to be. My work doesn’t think I am well enough to fulfill my job duties. I can’t disagree with them. My health is just continuing to deteriorate, and I’m not much closer to any sort of answer or treatment.

I saw my Rheumatologist yesterday and the appointment did not go as expected. She does not think I have an autoimmune disease, at least not by any current indications that she can find. Though during my exam she found that the tone in my arms and hands was poor. She also found weakness and spasticity in my legs and feet. She asked me if I had been checked for Multiple Sclerosis. I had right when this started in 2014, though not since then. She wants me to get a thorough workup with Neurology.

Along with that I’m having dengeneration in my knees, she didn’t connect that with the other issues she found, though I’m concerned about that.

She thinks my fever and some of my other symptoms may be accounted for by POTS, however, I’m pretty sure I’ve been screened for that before. I’m willing to go in for that again because well why not.

All of this madness started with Meniere’s and my brain. The migraines that were more than migraines. I forget about how hellish that was since I’ve been on the Lamictal for so long now. One of the initial concerns was MS though my MRIs had came back clean. However, I’ve never had a spinal tap and my last MRI was in the fall of 2014.

My health home nurse and PCP are referring my case to an expert panel to see what they might be able to figure out. I see my Neurologist on Monday and thankfully I have all the records from when this first started. I started seeing him post Lamictal when the migraine, aura, neurological madness had calmed down. I see pain management on Tuesday morning, the doctor is supposed to be good. Then I see my PCP on Tuesday afternoon. Along with all of this my short term disability paperwork needs to completed yet again.

Oh yeah, and the Meniere’s *sigh* The attacks started up again about a month ago, they were just around once a week. However, since Wednesday I’ve had them everyday and two of them were in my left ear. Yup. I’m bilateral now. My neurologist is also a Neurotologist so I’ll get his take on Monday, and my ENT Neurotologist is going to do steroid injections on the 22nd.

I’m sad about not being able to work AGAIN. Yet, at the same time I’m relieved. With as ill as I have been I haven’t been able to have any sort of personal life. Every ounce of energy was going into my job and often that wasn’t even enough. I’ve lost too much, and I deserve to have some quality of life.

I’m doing my best to grieve and simultaneously embrace having the time I need to heal.

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