Sunday friends

Life has changed a lot in the last 18 months. Some good, some fun and some not so good.

Currently I feel like this storm is just gathering speed. I am not sure if I am going to have the strength to keep this up. I am just going to focus on the good.

Copaxone. It is one of those things that if you don’t know, you don’t want to. Let me rewind. Eight years ago (some of those long and yet really short) I had my whole world rocked. Telling a 26 year old that everything is going to change without prior notice or consent is rough. Fun fact: I used to be afraid of needles. Even more interesting, the first DMD I was on just happened to be a medication that I had to inject three times a week. After eighteen months of that, I was lucky enough to try a new med … Once a month, intravenously. The girls at the infusion clinic and I became friends and foes.

Rewind back … Umpteen years. Sweet, little Tiffany needed to have her tonsils removed. Morning of surgery the nursing staff was unable to find a vein. Instead, they put drops of who knows what up my nose and I was out like a light. Woke up, hours later with a sore throat and an IV in my big toe. I have no idea how this works or how it was even an option. All I know is that to this day, I have no idea why I had to walk to the bathroom with a needle in my big toe.

Moral of the story is that I have always been a hard draw. The clinic had its good and bad days. Like Becky. She had a gift for finding a vein. Warm blanket and blood pressure cuff. Anya was a little more patient. Took her time, and usually found one in a strange place.

Oohhh then there was Amy. Once, by accident, she found one. By accident?! How is that possible? Well, when you have had as many pokes as I have you know. The good arm, right spot and ALWAYS look for the flash. Well, after Amy had been looking and dug for a few minutes, she had given up. With a sigh, she started to remove the needle. About half a second later there was a flash!! Surprised us both. She flushed the line just to make sure that it was a good vein. It was!! Not always easy or fun. Having the head of radiology using an ultrasound machine to find one was pretty much a rough day.

After that I was lucky enough to get a chance to try a pill. In the Multiple Sclerosis/DMD world, this is a big deal. The first one was … Eh. The only thing that I can say that I liked about Gilenya was that I was never hot while I was taking it. The battery of tests and so forth that I had to endure just for the pleasure of taking their medication was a little crazy and probably should have been a warning. After another relapse, it was time to change.

Tecfidera, here we come! Ohh how you deceived me. Taking the new, next best thing was supposed to make my life better. You lied. It’s not me, it is definitely you. We are so over!?!

My new neurologist confirmed that they are trying to make me … I am not sure if I can properly explain it. With MS, quality of life is not something that you take for granted. Good day OR bad, it was always there. After a long talk, he suggested that I try one of the ABC drugs. Well, let me rephrase. He talked about his experience with Rebif and how Copaxone was a great option. The only drug that is safe for pregnancy (that is a goal), well safer. IT has to say something when the pill that was going to make life easier and better IS a last option. That going back to an injection was exciting and preferred. Did I mention that I don’t miss that pill?

A welt or sore spot is nothing compared to the side effects I was dealing with.

So, I need to get something off my chest. We moved across the state this year. The only thing that I was upset about was that we had a fantastic group of doctors. The neurologist I adored. I have been a patient for 15 years, recommend him to everyone. Our PCP was just as great. So on, surgeons, therapist … Blah, blah, blah, blah. At the end of the summer we scheduled all of our check ups for the same day and drove 6 1/2 hours to get them all done. Two were a waste of time and gas, one was fine and the last sucked!! Our beloved PCP was leaving. Tuesday was her last day. At that point we had to find local care.

I am hard headed. And a slow learner.

So, we now have new doctors. Local ones that I … WE love as much as the old ones. Maybe a bit more.

What I have to do is let the other one, the old neurologist that I have loved for so long know that he has been replaced. The man has been a neurologist since 1970!?! That is a long time, so I am thinking that he might retire some day and then I won’t have to break up with him. At that point we can figure out the custody of the office staff. Tabitha, Amber and Jeannine can live with me, the other three with him. We can alternate the weekends and holidays.


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