Mike Has MS
Monday, September 17, 2007
Neurologist, Part 2
I went to see my neurologist this morning. She’s awesome. One of the things we talked about is the fact that my liver doesn’t appearing to be functioning properly. It explains why I’m B12 deficient. Before anything else, she ordered another set of bloodwork to confirm her suspicions. If the bloodwork comes back as expected, I’ll be coming off the Rebif. That’s three injections a week I won’t need to deal with. Obviously, this makes me very happy. But there is a catch. I’ll also be starting B12 injections. That means an intial week where I have injections three times that week. After that, it’s a monthly injection. I can handle this. The problem is that it’s an intramuscular injection. While I’m not thrilled about this, it will hopefully get me over this “always tired” thing.
I need to wait a few days before the bloodwork comes back. Then we’ll know for sure.
Friday, September 14, 2007
Neurologist
My neurologist’s office called today. They had a cancellation and wanted to know if I could come in Monday at 9:00. Considering my appointment is in early October, I jumped at the chance. There are three things I want to discuss/do with her.
1) Lets do the bloodwork and see if I really am vitamin B12 deficient. That might explain why I’m always tired.
2) Does she think that taking me off Rebif is the right thing to do. If she wants to try that, I’m totally okay with not stabbing myself with a sharp object three times a week. I do have another month’s supply of meds, so refilling that prescription is not a big deal.
3) What is the right amount/type of exercise for me to be doing? I’m really unhappy with my body right now and want to start hitting the gym more.
4) Am I due for another MRI?
Friday, August 24, 2007
Indigo Girls
I just got back from seeing the Indigo Girls in concert. They were fucking amazing. And I’ve never seen such a concentration of so many lesbians in my life. It was wonderful.
The opening group was fantastic. They’re called Girlyman, and I really liked them. Nate, the baritone guitar player, was kind of cute, too.
They performed a lot from their newest CD as well as some classics, including Least Complicated, Power of Two, Closer to Fine, and they ended their set with Galileo. I’ve noticed that Amy sprays a lot when she sings. But that woman has such an intensity on stage.
I told my friend Pete that this show was kind of soul cleansing for me. I just felt really good about myself as I listened to so much awesome music.
While we were sitting at the show, my left leg went numb. That’s not a good thing. I haven’t had serious numbness issues in a few years, and that concerns me a bit. The drastic change in the weather (like we’ve had this week) will commonly knock me on my ass, but it’s usually fatigue and not sensory issues.
Wednesday, July 25, 2007
MS Reflections: Keep (or Start) Living
An MS diagnosis can be a shock. When I was first diagnosed, I was afraid to do anything. In fact, these are my own words from four years ago.
I can’t over-exert myself. I shouldn’t put on any more weight. I have to be more careful in some situations because I have a lack of balance at times and might fall.
Looking back, that over-caution was a mistake. This is not the time of my life to stop living. If anything, this is the time of my life where I should be doing everything that I might not be able to do in the future. I know that my body isn’t going to allow me to climb the Sydney Harbor Bridge again when I’m in my 40s. If I want to do that, I need to do it now.
My advice to people recently diagnosed with MS is this: Don’t worry about the impact now. Keep living. If you’re not living now, it’s time to start.
Tuesday, July 24, 2007
MS Reflections: Taking Stock
Being diagnosed with MS can be a bit overwhelming. My initial reaction led me to emotions that were all over the map. The good news is that this is not a death sentence. Oh, it was cause changes in your life, but it’s certainly not the end of the world.
I was very fortunate in that my Aunt Velma paved the way for me. She’s been fighting this disease for about 25 years longer than me, and it helped me realize that I was going to survive. The sooner you realize that this is not the end of the world, the much happier you’ll be. As soon as you decide that you’re going to fight this, you’ll make good progress.
The first thing you need to do is educate yourself. Learn as much as possible about the disease and your individual case. Knowing about what’s happening to your body is the only way to survive this disease with your sanity intact. I’ve found that there aren’t many good books about MS that are current. The internet is your best source of information and support. Both MS Lifelines and MS Active Source are good places to start, but keep in mind that they’re sponsored by two of the major drug companies.
Ask your neurologist about your case. How far advanced is your progression? If your doctor uses a term you don’t understand, stop and ask for a definition.
Since I’m bringing up the doctor, this is another big point for me. Find a neurologist who really knows MS. Ask your neurologist if they specialize in MS. If not, ask if they can suggest one who does. Many major teaching hospitals have MS centers. My neurologist is in the Multiple Sclerosis Center at Beth Israel Deaconess Medical Center, which is the teaching hospital for the Harvard School of Medicine. Unfortunately, some of these facilities require a few months to get an appointment.
Your neurologist is your partner through this. That’s why it’s so important to find one that knows what you’re going through. Get to know the front office staff. You will speak to them often for appointments, messages, and prescriptions.
Reflections on having MS
I’ve been dealing with Multiple Sclerosis for four years now. I’m still fighting and I’m still winning. Frequently, people will ask me for advice or for what they should know about the disease. It’s time to start writing about those things. Over the next few days, I’m going to share a few things that I can contribute to those who are new to all of this.
Monday, July 16, 2007
Coping with MS
Having MS sucks. There is no other way to put it.
Yesterday, while Reggie and I were visiting Beth and Paul, I just felt really wiped out. In fact, at one point, I had to go upstairs to lie down for a while. It sucks to always be tired, especially when you go someplace exciting like New York City. But living with MS has taught me to take it easy and not get myself too worn down.
The other thing is that you need to become a pro at navigating the insurance system. I work for a great company, and we have outstanding health insurance. But you have to know how to work navigate the system. I started the process of ordering my prescription last week, and today I got a letter from the insurance company that stated my Rebif had been approved. The prior authorizations for medication are always a pain in the ass, so having that taken care of is a huge relief. So tonight I called the pharmacy to find out the status of the order. I have enough on-hand to last me another three weeks, so I’m in decent shape, but I don’t dare let them know that. They think I’ll be out early next week, and that causes a sense of urgency I need to get this process moving without running out of meds. When I called, a very nice woman named Carolyn explained that they requested the prescription from Dr. Stein but hadn’t received it back yet. This means tomorrow, I’ll be calling my doctor’s office to poke them. After they send in the prescription, then I’ll have to call the pharmacy again, who will tell me it’s held up for insurance reasons, at which time I’ll fax in the prior authorization letter from the insurance company.
Yeah, I’ve been around this block a few times. It’s a pain in the ass, but I absolutely have to do it.
Monday, July 09, 2007
Bloodwork
I went to my neurologist’s office today to have my bloodwork done. I’ve been putting it off for a while, and my appointment with the neurologist is in two weeks. On top of that, I’m tired of feeling sick the day after my injections.
My MS has been kicking my ass lately, and I had to tell my boss that today. It’s the change in the weather. The extreme heat came out of nowhere, and that’s not good for me. So I need to take it easy and take care of myself a bit. It’s one of the things that sucks about having MS. The worst part of it is that there isn’t really anything we can do about it. I just have to rest so that it doesn’t get worse.
My trip to New York has me concerned. I need to take some time while I’m there to just enjoy myself. My original plan was to get tattooed while there, but I’m not sure that’s such a good idea right now.
Wednesday, May 23, 2007
Downer of a Day
Ever have one of those days when you just didn’t want to be at work? Today would be that day. I did my Rebif injection late last night, and that means I woke up feeling all icky. If I take it earlier in the evening, the worst of it passes before I get out of bed.
I have nothing on my calendar today at work, so I brought Reggie in with me. He’s not feeling so well again. We were in the car, and I had to make a sudden stop, and he yelped out like he was in pain. When I picked him up, he yelped out. Now when I go to pet him, he cowers, because he thinks I’m going to hurt him again. I keep giving him little nibbles of cheese in an attempt to buy his trust again. I think we need to go back to see Dr. Sawyers again today. I can’t stand knowing that Reggie is afraid I’ll hurt him by picking him up. I hadn’t given him the metacam in a few days, thinking that he was doing better. He got a dose of it this morning.
On top of all that, I lost my sunglasses. These were the spare pair, too. Okay, they’ve been the spare pair since I lost my good pair at a friend’s party last summer, and I’ve just been too cheap to replace them.
Monday, May 14, 2007
Insurance Changes
We got an e-mail at work today telling us that we’re changing our health insurance plan. The premise is that everything will be better and that the transition will be incredibly smooth. Everything will be automatically transferred over they told us. Immediately after reading the e-mail, alarm bells were going off in my head. My prescriptions cost thousands of dollars every month, and I can’t afford to pay retail for these. I also know that I have two prescriptions that require prior authorization.
Trying not to panic, I walked down to see our benefits coordinator and explained the situation. She wasn’t entirely familiar with the prior authorization process, and I explained that waiting two weeks for this to be processed can be a bit of a hassle. So she made a few inquiries and found out that we would have to go through the process again with the new insurance. The good news is that we can start the process now.
I don’t like it when people fuck with my healthcare. Fortunately, I work for a company with good People. Christina has already bent over backwards to help me through this. We’ll make it.