Busy.. Busy.. Busy

If you are like me then holiday seasons are filled with a lot of traveling and agenda’s. I have been so busy that this is the first time I was actually able to sit and write. We were on a 3 week tour of agenda’s for this holiday season. 1. We needed to go back to our house that is for sale to paint. Not just to paint a little but the whole dang thing. That took a good week. Then we moved onto family.

My best friend was getting married and I was lucky enough to be the maid of honor. Let me just tell you, it comes with a lot of responsibilities but I have to say to see the smile on her face was truly worth it all. She was a beautiful and gracious bride. I just hope I did everything that she wanted.

 In between this all was Christmas Eve and Christmas. This holiday season was about trying to keep our traditions and just spend happy and memorable moments together. In the mist of all the craziness I have to say I love our families. And this was the FIRST year ever that we weren’t rushing to get dumb gifts because we didn’t know what to buy people. We actually had an idea and stuck with the plan. Although Mark and I still did our tradition of shopping on Christmas Eve.

Of course, holidays are not complete unless someone gets sick. Poor Mark was miserable the day after Christmas. Having MS, I have not gotten sick in almost 3 years. I always say that I have too many “good guys” fighting inside my body that I am just exempt. Well my “good guys” must have taken a vacation because yours truly caught Mark’s cold. How the hell do people do the cold thing? Agh! I forgot how miserable someone can be when they are sick with a cold. So I slept a lot. Piled on fluids and became heavily medicated. It took weeks to shake the cold.

The drugs:

I wish I could have said that Copaxone was working for me. I put up a big fight with this medication. I tried everything. I adjusted the depth, switched to warm packs instead of cold; I was still taking Benadryl and rubbing the lumps at the injection site. However, nothing worked! We went as far as injecting Mark with the meds to see if we were in fact doing it right. After he did it NOTHING happened. He has some redness and a PIN whole. That’s it! Even though he said that it hurt very badly and that he couldn’t imagine feeling the “bee” feeling every day. It really does feel like a million bees are stinging you. 

This experience has lead up to getting a new Neuro. Since we have moved, I have had a struggle trying to explain most of the things happening to me over the phone with my old Neuro. So I, or shall I say Mark, found a fantastic doctor that specializes in MS. The only problem is they had an opening in April. I knew that I was allergic to this medication and April is way too far away. So I had my old Neuro call and he got me Feb. I thought it was better but looking at the lumps and feeling the pain, this too was still not good enough. They said the only thing we could do is call to see if there was a cancellation. So I did everyday. I would call and plead my case, explain why I needed to get in sooner. They didn’t seem to care. Finally, I told Mark that he should try; maybe he will have better luck. So he did. I heard him plead with this man on the phone; he was explaining my sob story. He explained, while I have not had any exacerbation, that he didn’t want to take a risk. All of a sudden, he came out of the room and said that a nurse would be calling me to set something up later that day. Okay, I swear I tried that but no one listened to me! But whatever, he got me in.

So I set up an appointment in early January. Mark and I went down to the hospital where the Neuro was located and met with him. I shot myself up all week to prove to him that I was allergic. In my head there was no way I was staying on this medication. If I could prove to him that it was this bad maybe he wouldn’t consider leaving me on it. Of course I walked in ready to put up a fight and he nicely said I didn’t have to do that and that he would have believed me.

 Okay, put yourself in my shoes, ALL of the shared solutions people (the nurses given to you via phone for Copaxone) made me feel like I was insane and making it up. They kept telling me this was completely normal and I had nothing to worry about. So that is why I did what I did.

 Any ways, doctors and MS don’t really go hand in hand. This is my second Neuro and even though he was more thorough with testing than the last, you always have to make your own decision about treatments. Although it’s good, sometimes you need some more guidance. We went down the line and I explained that Rebif and Betaseron seem to have the same components as Avenox. (That is the medication that really didn’t work with me since I had 3 new lesions show up in my MRI scan.) So my last neuro thought it would be a good idea to get away from those. He had mentioned he would like to see me on the pill. (Gilenya) This is a tier 2 medication. And like I said before I didn’t think I was ready for it. But here I am.

The new neuro asked why I didn’t want to be on the pill or Tysabri, (this is an IV that you get once a month in a hospital). 

Here are my reasoning’s I explained:

The pill (Gilenya)-

I didn’t want to me put on this because it is new. It came out sometime last year and I wanted to get more statistics. I didn’t want to be on it because it slows your heart. And I don’t want to die.

IV (Tysabri)-

I didn’t want to be on this because it causes brain infections. You could die within 6 months of getting it. Again, I don’t want to die. The statistics of this medication are not in my favor. And the track record I have right now doesn’t look good for me.

After explaining this he then gave me his suggestions. The reason why he wouldn’t want me on the pill just yet is because the statistics are not there. Although it will slow my heart, it’s not so much to where it is alarming. It is only 10 beats. I would be monitored in the hospital for 6 hours after taking it just in case. But his real worry about the statistics is that we don’t know if this pill can cause infections like the other medication. This is the fear of the unknown. He gets my concern about the IV and he definitely will not push me to do it. But he tried to make it sound a little better, not to convince me but just to keep an open mind. 

As far as Rebif and Betaseron go he said that these injections are on a much higher dose. And that it might work for me. It is true that they are Interferon’s like Avenox but it could work. I still could get the flu like symptoms like fevers, chills, and feeling like a truck hit me. 

He then asked what I thought. Getting choked up, I didn’t want the doctor to see my vulnerability just yet, so I pushed it back and asked what if I wasn’t on anything? How bad did he think it would be? Since he was unable to actually look at the scans of my MRI’s he was only able to read the notes. But he said that seeing that there was progression even though they were silent lesions, he really wouldn’t recommend me not having any kind of medication.

Again, another blow to my vulnerable state. And then he asked again, what I thought. Once more, that ball was in my throat and I looked at him and said exactly what I was feeling. (I am never one to hold back). I said, “This sucks!” He really saw my hesitation and I told him that maybe I need to read more and talk to Mark. See if we are on the same page. I told him I didn’t want to commit to a medication just yet because I really have a month and a half of Copaxone in my fridge that I can’t use. With the mail order pharmacy, they like to give you a 3 month supply. If this new medication didn’t work then not only would I have the extra meds from Copaxone in the fridge, I would also have 3 months of the new meds. Then he came up with a brilliant plan. He would only approve a prescription for a 1 month starter kit for Rebif. If I had a problem I will stop and switch to the pill. If I liked it and want to continue he would approve more. 

This to me was a perfect situation. I would have one foot out and one foot in. So I opted for this. I was tested for the normal things that being on an interferon forces you to be tested for. A vile of blood for my kidneys and liver was taken, another one for my thyroid and something else. Finally another vile for the pill as a “just in case” measure. 

We have then decided on Rebif. This medication is taken 48 hours apart. We decided on Sunday, Tuesday, and Friday. I start with the smallest dose for 6 times (a half of a half) so my body gets use to it. Then I move to the half. If I can tolerate it I then will get the full amount. We had a new nurse come out to retrain us on injecting. She saw and felt the bumps that were the result of Copaxone. She was amazed at how bad it was. She actually said that I could have developed holes in my injection sites if I would have continued. (I have seen the pictures; they look like someone got a spoon and scooped out huge holes. I am so glad I stopped.) The injection sites are exactly like Copaxone, only you give it 3 times a week. 

Here is the good news, NO injection site reactions this time. I have a pin hole. I have no bees and no lumps. I have NO pain. However, I am kind of scared when I get the full dose to have those flu like symptoms come back. But it has to be better than what I was experiencing with Copaxone. So now I have a whole new slew of nurses from a different company (MS Life lines) calling and monitoring my progress. But as long as I have no new lesions and no site reactions, maybe this could work.

So there you have it. I have a plan. I am out of the dark and trying something new. And to top it off I have a position at the MS society as an advocate. I will be talking to state legislators about the disease. So take the bad to get to the good. Life is about the rollercoaster ride. Sometimes it’s not fun but it all has meaning.

With Love,

Amber