Hellobee

I belong to a few Facebook support groups for people my age with MS or any kind of Chronic Illness, and one thing that always strikes me as very tragic, is that a lot of people don’t have an effective support system.

My husband and I have been married almost 11 years. We started dating when we were 17. It’s disgustingly sweet really.

We have been through a lot together. Infertility, adoption, foster care, transracial parenting, and now a chronic illness.

As I mentioned in my last post, it took me ten days to get the results on my lumbar puncture, and those ten days were really pretty terrible. My symptoms got much worse, and I started having motion sickness. The best way I can describe it is that I felt very drunk all the time. If I would lay down in bed, the room would spin. If I would sit on the couch and try to watch television, the screen would move. There was one day where I literally vomited all day from it. Before this, any time I got sick I was able to clean it up myself. This was so bad though, that I literally couldn’t get off the couch. You can’t see it, but this photo has our trash can right at the edge of view.

The night before my appointment on the 10th day, the results of my lumbar puncture automatically uploaded to my online medical chart and unfortunately I got an email telling me so, and I read it. It said that my findings were “sometimes seen in patients with a B-cell tumor of the brain.” Google told me that a “B-Cell tumor” is fast growing cancer. At that point, we stopped talking. Because we started crying. And I had to tell my husband what I wanted to happen in the event that I went into surgery and didn’t survive.

It’s the hardest conversation we’ve ever had.

At this point, I couldn’t walk unassisted. So my husband helped me into the neurologist’s office the next morning where we sat in terror until the doctor came in and told us that I did not have a tumor, and did confirm that I have MS.

October 2017 – my vision had already been lost, and more difficulty began shortly after this photo.

We discussed medical intervention and how to proceed. Since multiple sclerosis looks so different for so many people, some choose not to medicate. These are very personal and individual decisions. My husband and I, together with my doctor, decided the best course of treatment for me was to begin a weekly injection that we would administer at home. And one of the first things the doctor told me was that I absolutely could not drink alcohol. So I quit. And it was easy actually, because the choice was dying. My injection can cause liver damage, so I have to get it checked every six months. Luckily, so far everything has been testing perfect, so I do allow myself a drink here and there, but it isn’t the same carefree thing that I once leaned on.

The doctor put me on a medical leave from work for six weeks, and signed me up for 12 weeks of physical therapy. Then I had to get a crash course in specialty pharmacies, which I didn’t even know existed, and I had to be taught how to give myself an injection, which is something I was severely unqualified to do. My weekly dose is an intramuscular injection, and I was taught to do it each week on my thigh, switching legs each week. However, I was experiencing tremors in my right arm, and my vision was so diminished that I couldn’t do any of it myself. My husband did the injections for me the first year. I do them myself now, but I know that without him, I could not have safely medicated myself.

Everything about me was incredibly slow. A shower would take me an hour, mostly because as soon as I finished I was so exhausted that I would have to sit on the edge of the tub in a towel for at least 20 minutes before I could get up and get dressed. There was one moment, shortly after being diagnosed that I made it to the chair in my room and broke down in tears. I couldn’t figure out why my husband would even want to keep me around. I was now such a liability. I wasn’t the pragmatic do-er that I once was. I couldn’t even shower without crying. I didn’t know why he and Isaiah didn’t just leave and go find a whole person to be with. Looking back, I know it’s illogical, but it was so real in the moment. I felt like I was holding my family back because I needed help. And thankfully, he was there to tell me that I was being ridiculous. You know, in the kind way that you tell someone sobbing tragically in a towel.

And just like he was there for me every step of the way on my bad days, he has also been there for me every step of the way on my good days. He helps me in ways that I don’t know if he realizes. I think a lot of people might see someone literally walking for you as the most helpful they could be, but the positive encouragement he provides is just as important. We signed up to walk a 5k together, and then we bought bikes and started riding them together. We went on a winter hiking vacation together last year, and he encouraged me to take Isaiah to the ocean. He never doubted my ability (at least out loud to me) to navigate several large cities alone when I went on my trip by myself last fall to Boston and Philadelphia.

And while it literally almost kills me to say that I’m grateful that I have MS, I am grateful for the personal growth it has brought to me and my relationships. More on that though in a future post about counseling. I hate that I had to take him through this with me, but I will never not be grateful that he is here.