I can’t take credit for the title this week. I was in a bookstore, and saw this title on the shelf. I related to it all to well. It especially fit my current situation. My tailbone hurt. Result of my spinal tap. My head hurt. Spinal tap again. My eye still hurt. Simply the MS to blame for that. My arms hurt. Result of my many blood tests. And now I had to go get something called a TB skin test. Great. What was this experience going to be like? I’m not going to lie. This was a weird one. Oh for the days when I was young. Everything was beautiful and nothing hurt. I was pretty sure those salad days were behind me.
I knew the Walgreen’s up the road, across the street from the Kroger we frequent, had a minute clinic, so that is where I decided to go to get the test done. It was a gorgeous day, that morning, so I geared up, hopped on my 1971 Honda CB 350 (God, I miss riding that beautiful machine.), and headed up the road to get my test. I went pretty early in the day hoping there wouldn’t be a wait, but alas, several other people apparently had the same idea. Of course, by this point, after several months of medical office visits, I had started to become a pro at waiting. Plus, since it was in a Walgreen’s, I could do a little browse shopping while I waited.
I wandered around for about 45 minutes, looking at third party IPhone accessories, low budget/low fun children’s toys, and mid-range office supplies. All the basic fare a corner drug store offers. It passes the time. I enjoy window shopping. I was, after all, raised by a mother and two big sisters. Window shopping is what we did for entertainment quite often, back then. We rarely had money to actually buy anything, but it was a ritual. A ritual that helped me feel comfortable in an uncomfortable situation.
I remember at one point, just shortly before my name was called, I rounded a corner to come into sight of the wide array of walking canes. I had been to that section before a few years ago. A completely different medical situation had made walking difficult for a time, so I had bought one to use for that short time. As viewed the selection they were offering, I remember thinking to myself, ‘Hell. I’ll probably be needing to pull that thing back out of the closet at some point. Depressing.
I didn’t get to dwell on it long. As I was standing there, I heard my name called. I walk into the very tiny examination room. I thought to myself, ‘I may have been pronouncing Minute Clinic all wrong, in the case of these services’. It was literally a very minute (tiny) clinic, and it was taking much longer than a minute to get seen, let alone get the test done. Yep, I’ve been using the wrong pronunciation of the word all this time.
The nurse practitioner who saw me explained the test to me. They would shoot a solution under the skin of my arm, wait two days for me to come back to the clinic, and check the results. She informed me not to be concerned when a large bulge grew at the injection site. That, apparently, would be a good thing. It sounded odd to me, but they were the experts, of course. See. Weird.
During the two days, sure enough, the large bulge showed up, and was very present when I returned to the clinic. I would be cleared to start taking Aubagio. The clinic simply had to send the results off to my neurologist, and I could start my treatment. The NP told me it would be in Dr Gong’s hands by the end of the day. Simple as that.
Not so simple, apparently. Two days go by. I get a call from the neurologist’s office asking when I was going to get my TB skin test done. After assuring the nurse on the other end of the phone that I already had it done, and that they should have received the results from Walgreen’s a couple of days ago. I was informed that they had not. Crap.
I give the Walgreen’s minute minute clinic a ring after I get off the phone with the neurologist’s office. I inquire about my test results, and the fact that my doctor had not received said results as of yet, even though she should have two days ago. The young man on the phone said he couldn’t find a record of it in their files. Double crap. He asks if I can simply take the copy of the results they had given me to my neurologist myself. I kindly told him I really did not feel like driving the 20 minutes to her office to hand her a piece of paper that they could, and should have, already sent her online. He then asked if I could bring the documentation that I possessed back to them. The information on it could help them find their records. So back to Walgreen’s a third time in a week just to get this Aubagio ball rolling! Surprisingly, I didn’t get too upset. This whole process had been a waiting game anyway. Waiting a couple more days wasn’t going to be a big deal. Yes, it was annoying, but whatever. That was the mindset I had reached.
A few days after I get my go ahead to start taking my starter pack of Aubagio from my doctor, I get a call from One to One. This is the service that the doctor had told me she would be contacting concerning assistance with payment.
As you can probably tell, due to the fact that I like to write (and read), I love words. In this case, words can not do justice explaining how wonderfully helpful the service, and the people involved with it, is. They have honest concern for your situation. The nurse assigned to my case, Patsy Bell RN, calls me every month to see how I am doing. She checks to see if I have any new questions, symptoms, health issues……..pretty much anything I would possibly want to tell her, she asks about. This is very helpful! As I have mentioned maybe a few times before, MS effects the memory. Several times she has asked about something I meant to bring up the next time she called, but had forgotten in the mean time. What a help, mentally!
Plus, since my insurance was taking care of most of the cost of the drug, but far from all of it ($500 a month was still yet to be covered. A price I would never have been able to afford.), they were covering the rest of the cost. After reviewing my financial situation, they had deemed it necessary to cover the remainder in total. My monthly responsibility would be a big fat goose egg! Fucking amazing! Proof that there is still good in this world! I’ve never met any of the people who work for One to One, and I’ve only spoken to a handful of them, but I love every single one of those people. They are life savers in the most literal sense.
Whew! Finally a bit of relief in this situation. One big damn cost issue I would not have to worry about. A gleaming silver lining on this MS cloud that seemed to be enveloping me.
I decide to start taking my daily dose of Aubagio at the same time as the blood pressure medication that I had already trained myself to take every day. I had finally begun to be able to strike back at this fucking disease! I felt good about it……….for a couple of days. Then…..
A few days after starting my doses, my first experience with a side effect hits. I won’t get into the gory details of it, but rest assured, my relationship with the porcelain throne became a lot stronger! The up side: I got a lot of reading and research done. The down side: I already had numbness in my feet, and now it was being extended to my legs, due to long….. um….. shall we say ‘sit downs’? It took a few weeks, but eventually my body adapted to it, and I don’t think I’ve really had much of anything else, in the way of side effects, in my experience. That is unless the numbness and tingling are from the drug rather than the MS. But as I said last time, how the hell is one supposed to tell the difference. If the pins and needles are from the drug instead of the MS, I can’t tell. Either way, it’s there. It’s just another thing I’ve had to get used to dealing with in my life.
There have been several of these changes. From diet to daily chores, there have been changes. From social life to social awareness, there have been changes. From mindset to perceived milestones, there have been changes. If nothing else, the knowledge of the fact that one has an incurable disease, it forces change into one’s life. Sometimes it’s for the better, as my change in diet was for me. (I lost 30 unneeded pounds.) Sometimes it’s not. Some changes can induce depression.
Depression. It’s a very common symptom of MS. It’s easy to understand why, too. One has to try to do without many things one loves, often. I had to face facts, realizing I just couldn’t do certain things that I used to. When I began to have vertigo and balance issues, I realized driving at high speed on two wheels was too dangerous. Therefore, it was time to sell the motorcycle. Due to the way the disease was messing with my extremities, I had to come to terms with the fact that I could no longer play my stringed instruments at the level of which I had spent years training myself. Because of certain reactions my body now had to select foods, I had to watch what I ate a lot closer. The fatigue was so overwhelming, I realized I could no longer perform at the high energy level that it takes to be an effective bartender. Over and over again, the changes kept piling up. As I said, It’s no surprise that depression is so prevalent in patients with MS. Plus, it doesn’t help that it’s often barely noticeable from the outside. It’s almost impossible to explain to someone the debilitating effect the immense fatigue has on one’s body. As I’m writing this, I am lying down because I’m too tired to sit up. Yeah. That’s hard to understand if you have never experienced it. But it’s real. It’s honest. It’s a part of my world, now. It’s frustrating as hell. It’s even more difficult when you know some people just don’t understand. It’s often easy to tell what they are thinking. “Yeah. Whatever. So, you are tired. So am I. Get over it.” They just don’t understand.
Luckily, I have a wonderful circle of friends and family to lean on. Unfortunately, I’m still not very good at using that network of support. Still, it is a great help knowing they are there. It keeps me hopeful. I can’t express my gratitude to everyone who has made themselves available to me since this has begun. You all are essential to me. No lie.
Well, sorry to leave you on a down tone this week, but as I explained, I’m trying to be as candid as I can. As I am writing this, I’m tired, I feel mentally unprepared for my day, and I would much rather just keep to myself, curled in a ball on the couch all day. Alas, the world doesn’t stop for me. Therefore, today is a day that I have to reach deep in able to find that strength to move forward. I have to find that mental space where I prepare to go on stage and try to give my best performance. Luckily, I know how to do this. A history of performance has prepared me. I can do it!
Before I go, I do want to apologize to my faithful readers for releasing this week’s post a day late. I’d like to say it won’t happen again, but it probably will. It’s the nature of the MS beast. Thank you for waiting.
I’ll try to lighten the mood a little by quoting Billy Crystal. “It is better to look good than to feel good!” Until next time, thanks for reading!