Rebif Shots

Rebif shots that sounds like I have been to a bar drinking some new alcoholic beverage!! Not really but I wish I were and that I could. Rebif is the current drug I am on for MS. I take 3 shots a week, at least 48 hours apart. The side effects are crazy flu symptoms. I get them almost immediately and go straight to bed. 20 plus years ago there were no drugs for MS. These drugs now are disease modifying drugs or DMD's. Rebif is touted as one of the only drugs that slows the progression of MS, gives you less and shorter relapse and longer remissions. Remissions average 21.5 months on Rebif. The other side of Rebif is that it keeps most patients working longer an average of 10 more years. I am hoping for much longer but we shall see. I have read stories of those who work 20 years. I hope to. I also take a drug that is an antidepressant that also works on chronic nerve pain and lets me work and get around with less pain. If I didn't take it I would be in so much pain that moving would be hard. It helps me be able to walk and such without wincing in pain. My hands and feet stay numb, with constant needles and pins pain. It is more like ice pick pains. They are more tolerable on this drug so I can get around better.

It seems in this day both spouses have to work to make ends meet. I know many people who barely squeak by with both working. I have been blessed that I have a good job that helps us squeak by. We have a lot of bills. I am sure one day I will have them paid down or off but until then it is off to work I go everyday. My insurance at my job is very good and that is another reason to keep working. I am not sure we could afford all my drugs without me working or having insurance. I am lucky because this is the first job I have ever had that offered me insurance. I had little policy on my own before moving to be with Jeff and it didn't cover a thing...I always had doctor bills. Now at least I can manage them somewhat.

When you are faced with a chronic disease or illness, it is scary thinking how are we going to manage this financially? I struggled with this. I cried a many a night since September wondering how we were going to make it. It is scary. I don't want to lose our home and sometimes I am afraid that just could happen if I were to not be able to work. So, I push on. Believe me I would love not to work and take better care of myself in the process. Since I work, I must go to bed earlier than the average bear who has MS. I sleep all weekend at least til 11 am and then I may nap in the afternoon and still go to bed by 8 pm. I have to make sure I am eating right in the process as well. I am hoping to start walking and maybe running some for exercise as well as some strength training. I have to avoid getting hot or overheated but I think I can do it.
I read lots of other blogs and posts on MS Facebook pages and there are some who have more issues than I do that can't walk or have to use walker etc. I am very lucky to be able to get up in the hospital after being temporarily paralyzed for 2 hours in the hospital in Florida. I count my blessing everyday. I don't know if the next relapse or flare up will leave me in wheelchair til it passes but I hold out hope and I am very positive that I will not have to much disability after the next relapse. It is still very scary and I am not even sure if scary is the right word to use. I guess maybe I worry too much. Either way it is almost one of the toughest challenges I have ever faced. I thought the challenge of having children and the challenge of losing them would be my toughest challenges, boy was I wrong. I had friends that got divorced around the time I did and they said their divorces were the toughest challenge and it still is. I am not sure why MS chose me or why I developed it. So many theories are out there as to why people get MS, and none of them ring to true to me. I guess it is like the old saying goes, God doesn't give you more than you can handle. I don't think God gave this me, I believe it was fate or the luck of cards or whatever. I just don't want to wake up one day and say to myself why didn't I do this or that...so I have to get what I can out of life while I still can...Anyway, thanks for reading...have a super day and week!