Out of an orange colored sky

I walking along, minding my business....when crash, bam, alakazam!

Ugh. That's how this stupid disease seems to work. I was feeling really good yesterday. I actually had a lot of energy (for me) and nothing was working out of sorts. My balance was good, nothing was numb and I felt pretty good all things considered.

Today I woke up feeling the same way. In fact, I didn't even have my usual morning stumbles where I try to regain my sea legs after a long nights rest.


Then, out of the "orange colored sky" the MS Girdle was back with a vengeance. I was literally walking along, minding my business when I doubled over and my breath was knocked out of me. It feels like someone is trying to cut me in half with an ace bandage just under the bottom of my rib cage.


It seems to ebb and flow in severity, but I am totally numb from ribs to belly button, front to back. Why today? Why right now? Who knows. Apparently those nerves have decided to short out for the time being. I just wish they wouldn't short so hard when they decide to go out.

Stupid holes in my head.

Injection Complete

I did it.

I successfully injected my first dose of Avonex.

I am relieved to finally have this part of the journey behind me. I have been thinking about it for the past five months and after all that build up, I am glad to be moving forward.

(Darci, this part may be more than you want to know and involves needles. Feel free to skip ahead two paragraphs.)

So it hurt. Not the needle going in. In fact that didn't really feel like anything. Just a little pressure. Psychologically, it was monumental! The needle is HUGE!!! In fact, the needle is just as long as the pre-filled syringe is. An inch and a half. There was a moment where I thought for sure that I was going to hit my femur before I got it all the way in. Apparently the thigh is meatier than one would think.

The part that hurt was actually pushing the plunger. The Avonex burns going in and pushing faster makes it burn worse, so it is a slow process. The dose itself is very small. Only 30 mcg. I would estimate that to be about 1/2 a teaspoon or less? I will try to find out for sure.

As for the dreadful side effects that I was warned about? That part was true but not as bad as what I had heard. So far though, the severity of my symptoms is mild to moderate. I have a headache and feel achy all over in my joints and muscles. I am also exhausted, but am having trouble finding a comfortable position for more than 30 minutes at a stretch. I see a lot of little naps in the next 24 hours. I have been up and around the house. Taken a couple of short naps and watched a movie with a girlfriend who came over to hang out with me for the evening.

All in all, it has been a better day than I had hoped for. I have wonderful friends and family who called to see how I was doing, came and hung with me so I didn't have to feel lousy by myself, brought me lemonade cause it sounded good and most importantly; prayed and prayed and prayed for me.

Thanks to all of you. I LOVE having you on my team!

Injection Day

So tomorrow is the big day. The day I have been waiting for, dreading, anticipating, needing for the past 5 months. Tomorrow is injection day.

I have watched videos on youtube of people doing Avonex injections. I have read about it. I even watched the informational (propaganda) piece created by the Big Pharma company that created Avonex. So I feel like I am in the know. I am prepared for the injection. I am confident that I can do it and that the injection will not be that bad. After all, I have been self injecting Vitamin B-12 for months now.

I also feel like I am about to step off a cliff. Tomorrow feels like a milepost. A bench mark. The beginning of the end? I don't know.

Here is what I do know. I will do this injection every week. For. The. Rest. Of. My. Life.

...........

That is the part that messes with my head. The rest of my life. I am committing to inject myself with a synthetic drug that will make me feel like crap and HOPEFULLY get my body to stop munching on my brain. And I will do this FOREVER.

Of course a cure could be found before then. I would LOVE that! I am not holding my breath that a cure is going to come about in my lifetime though. MS is a weird disease and it doesn't manifest itself in people the same way. That makes it not only hard to treat, but even harder to fix. Especially when they don't even know what causes it at this point.

Anyway, I am nervous about tomorrow. Not because it is going to hurt (it probably will a little) and not because I am likely going to be feeling like I have the flu by tomorrow night (although my mother is praying that I be be an anomaly to the statistical average) and not because it could cause me some kind of serious harm to take it (it could, but its REALLY super unlikely).

I am nervous because I am about to start treating this disease that I can't see, that won't behave and act predictably, and once I start, there is no going back.

And yet I am blessed

I see a lot of doctors and medical providers these days.





I have my Primary Care Provider (PCP)


I have two MS Neruologists


I have a Hematologist


I have a team for my study at OHSU


I have a counselor





I love all of them. Okay, most of them. I would love my Hematologist more if I could take him off my list. He is a VERY smart man when it comes to blood disorders, and if I ever had one that required care and treatment, I would want him to be the one treating me!



Sometimes it sounds like I should be on deaths door because if you ask me what my schedule looks like, it seems I have a doctors appointment every day! I don't, but I am running from one provider to another regularly.



My team at OHSU has been fantastic! When I have my monthly appointment up there, I am met at the front desk and off we go to the lab for blood draws and urinalisis. The phlebotomists are even starting to know me by name. Which is nice, since they are also starting to learn where my veins are.



I now joke with the research manager for my study about my lousy veins. He always says he is going to do my draws and then chickens out and sends me down to the lab. I told him he has to do it at least ONCE before my study is over. He is just afraid he will have to do multiple sticks. And I keep telling him that EVERYONE has to do multiple sticks on me. Even the lab.



The nurse manager for my study is great as well. She and the research manager are in constant contact with me about my apointments, my drugs and any reactions, how I am feeling and if my symptoms have changed. They also escort me around the hospital for everything, waiting while I get labs done and making sure I have everything that I need. I am sure this is not normal care for the average patient, but aparently being in a study makes you a VIP patient. Crazy.



I just love that everyone I have come in contact with has been so kind, caring, and willing to listen and explore options of care. I know that I have been very lucky to recieve care like this and blessed to recieve this kind of care at no cost.