My MS/HSCT Journey

So I want to share something exciting with you all that is a big deal for the MS community. If my dear friends have friends that are Newly diagnosed, you could help them.  So I was diagnosed last year with Multiple Sclerosis. I have so far tried 4 different MS medications. #1 was Copaxone which is on the weak side of the totem pole. #2 was Tecfidera which made me so sick from the side effects. #3 was Vulmerity which is just a hair better than Tecfidera and which I technically failed since I relapsed on it. Vumerity was also denied by my insurance which is why I sought other treatment. Tecfidera and Vumerity are good treatments but not the best. I handled Vumerity better than Tecfidera but 1 month after taking that I was put on #4 Rituxan which is considered a highly effective effective MS drug. The big guy. One of the best. Well a study was recently published that basically says that taking a highly effective drug modifying therapy (like Rituxan aka rituximab) slows disease progres...

 It's funny how things in life come full circle. I always tried to steal clear of all the things my mom and sister did that my moral compass that were morally wrong but one thing they both couldn't help was being on disability. My mom with a mental disorder and my sister with type 1 diabetes. Both of them at one point or another had tried to work but found they couldn't for one reason or the other. Now that my husband and I are swimming in debt, I am now considering going on social security disability. I am hoping temporarily but only time will tell. As it is now I can barely lift 10 lbs, I can't stand for more than 5 to 10 minutes, if I am fatigued I feel like I am going to drop on the spot, and I officially am not supposed to drive per my husband and occupational therapist. Today I was looking at jobs, one of which paid 17 per hour. I thought, "I have the experience, I can totally do this". Then I remembered my current limitations and that made my heart drop...

     Sometimes it takes a little compassion and perspective to really understand what someone with MS has to deal with. During my journey, I have seen just a small piece of the MS beast. I always say things could always be worse and today I found a perfect example. I am not supposed to share things from my MS community but I can't help but do so after reading it.       It broke my heart and my spirit ached for reprieve. My soul begged for mercy and I prayed inwardly while wanting to cry out for someone to help this poor person.       What really puts things into perspective is that homelessness is not uncommon for people with MS. Neither is divorce or family abandonment. I read stories like these every day and I count myself blessed to have the support, both mental and physical, that helps me fight this disease.       Meanwhile, a part of me feels guilty for those who are alone fighting this disease. I can only h...

     This morning we drove to Medford to the Infusion Clinic. My husband was not able to come in with me because of Covid. He took me to the elevator and then I was on my own. Not completely. He texted me multiple times during the infusion to make sure I was okay.      After I checked in, I sat for a moment until the nurse came to get me. She was super nice and gave me the choice of seating. There was one older man already there and from my eavesdropping abilities, I gathered he was there for some kind of treatment for cancer.      I set my things down and went to the restroom. When I came back the nurse took a warm pack and warm blankets and wrapped them around my right wrist. The heat was supposed to make my veins more apparent.       Before she got started she went over information regarding Rituxan; what it's used for, common side effects, serious side effects, and if I had any questions. I did have one. How long did t...

     Today is my last day of Vumerity! That means 4 fewer pills a day. It's a relief. I hate taking pills and because my pills are huge and all different shapes and sizes, I have to take them one at a time. I am super nervous about my infusion tomorrow but so so happy about taking less pills. My 9 pills a day have turned into 5. It's definitely something to celebrate. Vumerity is the large 2 white pills in the picture below.

     I can't stress enough how important it is to not only take care of your body but also to take care of your mind. I have recently learned that I don't have the time or energy to get caught up in the drama, gossip, and just plain stupidity of others. My illness is more important than energy spent pleasing others or keeping up with the lives of those who wouldn't do the same for me. It's too exhausting and my focus is better to be kept on the most important things like those I love, my illness, and self-betterment.      I found this gem (below) on Facebook and it really resonated with me because I feel like I just recently allowed myself to let go. I realized I could use more positivity and less negativity because getting caught up in this illness can easily push you to your breaking point. It can easily take hold and pull you into a sea of helplessness and sorrow. I see it a lot in my MS community. People tend to hold on to the negative aspects and sprea...