So I’ve decided to try a new medication for my M.S. I usually don’t take a medication that has just come out but my doctor thinks that we don’t something strong things will start to become permanent in the relapse area.
I’m scared because I have data on what the results are, I have some of the side effects and some of them I’m to crazy about. My neuro told me that this is the only way to stop the profession. I have yet to schedule the infusion because my husband just got a new job.
It’s an infusion takes a long time, to start they do 2-4 hours to make sure there are no side effects and then three move up from there until we get to 6 hours.
The good thing is the even though
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So I finally did the first infusion and i have to say that I was a little concerned about the possible complications that could occur like breast cancer and PML which is a brain disease that could kill you. yeah, that makes me feel better. They gave me some benadyl and steroids as well as fluids for pre-medication. They were surprised that it didn’t make me sleepy. I guess I was just a little nervous and anxious. My blood pressure was high in the beginning but it actually got a little lower in the end, which was a side effect that I was a little worried about. I glad that I didn’t take my blood pressure meds before because I didn’t want it to go to low. It took 4 hours not including the pre-medication which was after I took the meds I had to wait 45 mins before the infusion began. When it started I wasn’t even aware. After it was started they came and took my temp. and my blood pressure every 30 mins, to keep checking on me. When it was all done they said I had to wait 1 hour for observation and then I could go. It made me feel really tired and kind of dizzy.
In the end I was scared about the results of the side effects that could happen. I know that I shouldn’t get ahead of myself but after the hour observation I was told by the nurse that no one has come in for the 6th month infusion, which means people have only started this medicine. I sure hope that there aren’t any issues with the medication.
I’m going to stay positive and hope for the best.
Tomorrow I start my new medication of Ocrevus and I’m a little worried and nervous. This is an infusion not a shot or pill. I have only taken a shot. They have to give me some pre-medication before they give the medication, that is why I’m nervous. I usually don’t take meds that have only been out for a little time. This one hasn’t been out that long. It’s given every 6 months and I’ve had that no one has had their 6 month infusion. That’s not good. There are some side effects that I’m not crazy about reading. Of course I go and read the side effects the day before I’m going to take it. I do that with everything. Also I usually have the side effects that are with any kind of medication.
I know I need to take a medication because I didn’t take after my son was born because he got really sick and was in the hospital for a whole year. All that stress of possibly losing your son did it’s toll on my brain and neck by adding a bunch of new lesions. I had the worst flare up this past year and it only made things worse. I’ve never has a flare that lasted for months before. My husband wanted another child but I just wanted to get better. He seemed to think the estrogen of being pregnant would help the flare but not everyone gets that good feeling while being. I can’t afford being pregnant and having a really bad flare that cannot be treated because I’m pregnant.
Our son right now needs us to be on the ball and I don’t want another child to take anything away. I can’t even take care of him the right way because I get so tired and I’m in so much pain that it makes it hard to do the things I need to do for him. I hate that and if having another child might make things worse. I’m not a gambler and I want to walk until I die. I’m taking any chances at the moment in time. Do I want another child? Yes, having a sibling for our son would be nice but not at this time.
On the 23rd of December I went into the ER with what felt like my head cracking open. It was the worst pain I’ve ever had. My husband had to carry me out of the house and into the car. I had sunglasses on and my hood over my head because the light and sounds were awful. When we got there were not that many people there but we still had to wait. It felt like forever just to be seen. I was in so much pain that I was about to pass out. My husband went to triage people and said something and I got in not much time later. It seemed to be kid day at the ER which is the reason why it took so long. Kids come first and there was nothing I could do about it.
Finally in they gave me some pain meds and brought my pain down from a 10 to 7. Then after a little while they gave me more meds and I was able to walk a little and out the door. It was awful because my husband had practice for a concert for the holidays that he wasn’t to make. I apologized like I always do and of course he said there is no reason for to say sorry. He was my rock that day as he usually is but that day was a day he never thought would happen I think.
My husband and I decided for me to start the new medication and we are hoping for the best.
I have been forgetting words, how to say things, mixing words and getting dizzy from time to time and just not feeling like myself. I think I need a nap right now.
I have been writing on here to give some of my insight of how M.S effects me and I have no idea if anyone reads them. I am no doing good. I am in pain a lot of time and having a 3 year old can be challenging and hard when it’s christmas time. We barely have enough money to rent let alone to buy gifts for family and the 2 little cousins.
I’ve been working on my book that has to do M.S and hopefully it will work out for us. I have been trying to make a difference in this family by providing money.
I also take pictures so that is also on my to do list to make money for the family. I just hope that something takes off. I’m tired of feeling like a burden to the entire family.
There are things that I hate about living with my aunt and uncle but right now we are really at our ends of how we live compared to how they live. Everything is so perfect upstairs, and we live in kind of the way we life downstairs.
We can’t put things on the walls and it’s alsmost like they parent us. We already have parents and I’m really not in the mood for new ones that are perfect.
I really just want to be myself and life how we always live. I’m tired of feeling like I’m walking on my titytoes. I want to walk as hard as I want damn it!!
This is not the life I had hoped but all I can do is just fucking wait and hope things get better.
So I get a few pills from a friends of mine and my husbands take a couple but I can’t refill mine and we only have 1 and a half left and because I really needed them last time he said he gets this one because of that. I’m so pissed because I really needed them today and now I have nothings. What does he expect me to do. I went to see a doctor and he just wants to me do epidural shots. That’s not what seems to help. Actually it seems that I just don’t want to feel anything, and I don’t want him to take my pills.
I used them for my sore legs and it sucks that he doesn’t understand that!! I wish that he could just be a little more understanding that he doesn’t need them I do. I find it not fair. The pills that I got are for me not him. I have no else to get them from and I’m starting to think about medical marijuana.