Diabetic Cyborg Life: Neurology, Gratitude

New glasses are coming soon as I can get them filled with prescription lenses. (Note it’s not a selfie, I used the back facing camera. 😝)

The May 2nd appointment with my neurologist showed me the anxiety I felt before was apt for my under medicated state. She questioned me about how I was feeling and doing, and I voiced that my reasoning seemed off and I was anxious about not being medicated for the last three weeks. Then, she assessed my current state with her usual routine of physical exercises that she has me do every visit.

My chart I have access to online shows that she recorded my impaired cognition and observed ataxia, or impaired balance or coordination. I remember that I stumbled once and she steadied me while doing the heel to toe walk she always does across the room like a runway model. The stumble that I saw as my feet just getting weird was seen to her as the ataxia that she noted. I guess that was a bigger misstep then I gave it credit for.

She told me that I was going to have to get infusions of steroids for three to five days again if I did not get my medication by in the next two days. I see now that I was right to be fretful after her observation of my under medicated state and her prescribing that treatment. That is the same thing I got when I had active brain lesions again back in 2017.

At one point in the evening after the appointment, I felt like I was about to fall over and needed to get to the hospital quickly. The state I experienced was either a result of not being medicated for three weeks, or I was simply tired after not sleeping as usual after a stormy night. My usual eight or nine broken hours of sleep was cut to six to seven. I woke up early, as I was worried about the power going out and getting to cook and eat when I got up. All was better after I got a normal night of broken sleep.

The insurance issues are at least settled to point that I got my medication finally after the neurologist visit. So, at least I am not facing another run of days at the infusion room at the hospital. The night of my appointment still makes me realize that, yes, I have multiple sclerosis, or MS, and, of course, I am going feel issues after three weeks of no Copaxone or Glatiramer Acetate.

Never dreamt I would love seeing this so much. Copaxone, I missed you! (Photo by me)

The visit, also, will result in another MRI in the coming weeks. That last one was not with contrast and she and I both thought it was ordered with it. However, I can see that it says without contrast as I look back on chart. Even our docs can have issues with ordering and remembering what they did in our health. That does make me feel better about accidental mistakes on forms and memory issues when my health is concerned.

Screen shot on my United Healthcare profile on their site. This is a welcome image after a long fight to SSI/Medicaid.

The health insurance with United Health Care started on May 1st and that made the medication issues and some unrealized improvements for the health care. The Medicaid website listed all doctors as the same thing I found when searched for a psychologist or psychiatrist. Now, the site United has will actually properly list the type of doctors I look for.

More proof of why I have gratitude for the now where I have health insurance again.

Also, the plan gives me a health coordinator to help me set-up how I get medications and supplies for my pump. The fact that I, the neurologically ill patient, had to worry about that was quite ironic, and now there is an actual health care worker to at least assist me. This makes me hope that my stress level will lessen for my mental health’s sake.

Honestly, the need that I feel right now is just to reflect on the first third or so of the year so far in my life and health journey. Just to state the obvious that I am still affected by my chronic and mental illnesses. That will be my condition until there are advances and healing diabetes and MS research.

However, I do no longer have to constantly worry that my health insurance is bankrupting my family and forcing me to sell many of my favorite possessions. The gratitude and appreciation I feel for that blessing is really something I cannot put into words. The almost two-year long struggle to actually being found disabled after filling that paper work out in the hospital bed the day of my MS diagnosis was ridiculous.

Many things were on that excursion done in almost unrealistic way that. I only ever dreamed of actually getting on disability. I am still in shock when I look at where I am now. On disability and getting health care thanks to Medicaid and Health and Human Services, or HHS. The fact that my I am disabled and my income comes from SSI mean I get health care for a zero premium dollars a month.

Those two things are only what I ever fantasized about that night after my diagnosis in the hospital when I filled out the disability application. The news that I more than likely have MS and the reality that all that meant to plans and hopes for employment were still syncing in. Filling out that app was the one light I had that night as I fell asleep.

The appreciation I feel toward myself for even thinking that I might be found disabled because my illnesses. My family for being there and staying by my side when the rough times got even worse, and the lawyer that helped shock me into doing exactly what she said without questioning anything she wanted to say.

Being the focus of her “shock treatment” appointment with before that hearing was horrible. However, she was unbelievably awesome once she got in the room with judge. She was worth every penny I paid her out of my case.

My outlook on life is totally changed from what it was in 2017 that night in the hospital, and I can’t imagine what might be if I did not decide to try to get on disability.

Like the blog? Watch for the vlog on Wednesday the May 29th!

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