One Year

This month marks one year of doing Kesimpta injections for Multiple Sclerosis. The year has been a turmoil of mixed feelings. Gratitude and being grateful often play a lot with my feelings in terms of my health. I’ve been told recently by someone repeatedly and in a very bullying, hurtful, demeaning way that I should be grateful for what I have. I took offense to that comment and to me it was insulting to a person with a chronic autoimmune incurable disease. It took a few weeks of lost sleep, a lot of tears, anger, return of my PTSD, and meditating, working in my gratitude journal, praying for some answers that I am extremely fortunate to have some things that make my journey in life bearable. These things are: I receive a disability check with health insurance (I have worked since I was 14 years old so that helped) (I know many people with serious diseases that cannot work are denied disability everyday), a very expensive power wheelchair, a dear close friend that lives 2 minutes from me that comes if something is wrong or when I need serious help, a barrier free wheelchair accessible apt (which took 2 years to wait for), I have a semi-sort of good neurology team that often does try my patience because their response time to things needed averages 1-4 weeks (forget emergencies). Forget the PCP – half of the time most do not understand pain, lack of mobility, fatigue, brain fog, and why some medicines they prescribe wreak havoc on my body, I can ride the transportation system just to get out of the house, I can still shower independently sort of.

Still… despite the shortcomings, I am grateful for what I have. There are others worse off than me.

My power wheelchair came with a lot of resistance, frustrations and tears navigating the State of Michigan’s MRS/VR system and my health insurance demands. It took almost 2-1/2 years to get this wheelchair. Let’s talk about the repairs that come with the wheelchair now my main independence and legs. There are not enough wheelchair repair companies. The lead time takes 6-8 months to find a company that accepts health insurance, get the wheelchair assessed, delays from doctors’ referrals, written proper ICD-9 coding from the neurologist team, scheduling conflicts, transportation conflicts, expensive co-pays, waiting for parts to be ordered. Still, I was told to be grateful, this comment still blows me away.

Kesimpta is extremely expensive. Medicare (aka Medicare Advantage under a health insurance such as Priority Health or other insurance signed up for) has refused to pay for these meds. My copay is 33% of the cost of meds which is $1,500 to $3,000 a month. I filed for patient assistance through Novartis Pharmaceutical based in Switzerland and was approved for monthly shots I give myself in my leg free of charge. Hallelujah! For one year now, I have had migraines and suffer from nausea every day. Am I still grateful? My life changed. Are these meds harming me? I don’t feel well every day. I feel like I am getting worse with my health. Food upsets my digestive system. I can tolerate only plain rice, plain potato, toast, crackers, ginger ale, which are all carbs that make my diabetes out of control. A catch-22 situation. I’m struggling with these issues daily.

On top of the Kesimpta issues, I now have internal tremors. My spine, butt, legs, and face “vibrate”. The vibrations sometimes wake me up out of a sound sleep. I’m not looking forward to letting my neurologist or nurse practitioner know. I get no response from them. They do not know what to say or do. No one does. The painful zingers “electric shocks” across my face are constant, every night when I am resting. But the thoughts of gratitude and being grateful stab my thoughts every single day.

The words “be grateful” haunt me…