My MS/HSCT Journey

     I am so sick of posting new symptoms but I am about to post another one. Today it's cold in the house and I am borderline freezing but it feels so much better than the heat I have had to deal with I'm the summer so I am appreciating the cool air in the house.      My fingers are pretty cold and so are my feet but my feet are always ice cubes even with socks on. Then I notice the pain in my shoulder and there is a new pain in my arms. It's deep and feels like it's coming from my bones. I have never had a dull deep ache like this before. It hurts and is uncomfortable. I think it might be from the cold?      The pain in my shoulder I have had for a while now. I was told it could be caused by a muscle being pinched and inflamed. I am waiting to go to the doctor so I can talk to him about it. I think it was caused by the dystonia. A few times I had those attacks it felt like I was going to pull my arm out of the socket.      It...

     So since yesterday's post, I have been doing a lot of self-reflection. I noticed lately that I have been getting quite emotional and I had assumed part of it was MS-related or due to my medications messing with my hormones. I still believe this is true but not completely the problem.       While reflecting I realized part of my problem is fear of MS severely debilitating me and/or limiting my life to the point of being unable to be independent. I worry that MY disability might become someone else's and taking away their future and their freedom.       I love my life, myself, and my body. To be diagnosed with a disease that affects all 3 of those things hurts but the challenge of diagnosis is finding a way to live through it all despite the difficulties. I have accepted that things are going to be hard but now I deal with the fear.      The last three months have proven to me that I can pull through the relapses b...

     Today something hit me. It hit me hard. Children and when/if I am going to have them. I was thinking of my medication and starting the infusion and wondered if it's possible to carry a child on Rituxan. I looked it up online and it says to wait 12 months after stopping Rituxan to ensure your child doesn't have birth defects. Another thing I read was the medication wouldn't cross the placenta wall.       That was all it took for my throat to catch and my eyes to water. I am 32 years old and I will be 33 in March, 6 months away. Now was when I planned to have kids. At this age, I was sure I would have a little boy or girl, and instead, I am dealing with MS and worried about another relapse. If I took the time to get this infusion then decided to get pregnant it would be 1.5 years from now and that would just be if I got 1 infusion.      That child looked like me, talked like me, was a part of my family. He or she shared the same DNA. ...

     So I relapsed twice in the last 2 months and my emotions are getting to me. I about cried on the way to get my blood drawn and then straight rage answering the receptionists' questions because she was new and learning. I feel like a mess and trying to stay positive is proving tough today. Hold on tight, today's gonna be a bumpy ride.      I was aggravated to begin with. I had to go to the hospital that is full of Covid cases right now. The lady who brought me a wheelchair told me I could walk. I had to explain I had an MS relapse and would fall without assistance. They wouldn't let my husband assist me even when we explained he is my caregiver, which annoyed me further. Yesterday my occupational therapy was canceled and the therapist has all next week off too. Kurt and I speculate it was due to Covid.      There is one silver lining. I am one step closer to getting my infusion. I had to harass my neurologist every day this week to get it...

Today I had a virtual appointment with my MS specialist. She wants me to do outpatient physical therapy because she feels it is important for my recovery from my relapse. She is going to provide me a referral as well as a prescription for a cane.  I asked her if the shringrix shot had anything to do with it and she told me, "It is hard to tell. It may be a coincidence because studies haven't found vaccines, including the covid vaccine, to be associated with relapses. However, sometimes if people feel poorly after a vaccine their old symptoms may get worse." She also suggested that we can try to move up my next Rituxan infusion so long as insurance approves. I guess I will talk more about it with her at my next appointment.

One wonderful thing about having MS is that you never know what to expect. Symptoms can come out of nowhere at any time, for any reason. That's why it is so important to keep your spirits high and to have a good sense of humor. Today I will share some of my own special moments. Hopefully, you find the humor in them as I do. I have to pee. Of course, urination is normal but because of all the fun medications I take, I pee about once or twice an hour. The medication makes me thirsty so I drink water all day. Also because of the relapses, I am unable to hold it in. My husband hurries me to the bathroom as fast as I will go, we struggle to pull down my underwear, and as soon as my butt hits the toilet I already have a study flow streaming. In the event I don't make it totally in time, I manage to leak a tiny bit. I won't complain. I could have no control and rely on depends. I could only imagine my husband and me dealing with that. Sometimes while I pee I try to look him in the...

     Today is the last day of oral steroids. I think they are helping because it doesn't seem like my symptoms have gotten worse however my left leg is weak, my left arm is recovering, my right side is recovering and movement or change in position is exhausting. I just keep hoping I will wake up and have all functions back but that is unfortunately not how this disease works.      Do you know how older people say they need to stop and rest? I now know exactly how that feels and it sucks! In my mind, everything seems normal but when it comes to the task itself my body refuses to accept the messages sent by my brain. My left leg refuses to move and it takes time for it to finally receive the message.      I like the steroids because I feel like they help so much except for some side effects. Heart racing, shortness of breath, darker facial hair, and brain fog/confusion are just to name a few. They're not so bad but do catch you off guard. I won...

     Today I called my neurologist and told him I was experiencing left-sided weakness in my leg an foot. On my visit on the 3rd, I expressed that I was having disoriented and clumsiness in my left arm. He suggested it might be caused by fear of having a relapse on my strong side.      Today he told me that it's likely another relapse and prescribed me prednisone. 50 pills for 3 days and no that's not a typo. I started them this morning. I have been so tired and can't type very well so I'm going to close for the day. I'll explain everything in more detail when I am feeling stronger. Thank God for my husband.      Oh, and my insurance rejected Vulmerity due to a lack of information on the appeal from my neurologist's office. He wants to switch me to a more effective infusion medication called Rituximab.      My neurologist wants me to try rituximab infusions since my MS is being aggressive. It's used alongside cancer treatments ...

     Out of 328.2 million people living in the US, I have to be part of the 400,000 with multiple sclerosis. This makes me so angry. I feel like I got ripped off. These past few months have been hell. Why me? Haven't I lived through enough hell? I don't want this for myself.        I have been looking for my purpose, trying to create a life for myself, and trying to do things I can look back at and be proud of. Now I feel like I need to stop and recalibrate and I honestly don't know how to do that right now with everything else I have to do to recover.      I try to think of the positives in my life but at times I struggle trying to convince myself they can't be snuffed out by this huge dark black cloud that has moved in. It wants to rip it all away. I must have been one wicked evil being in my past life if this was karmically delt.      It's hard to not wish for other ailments instead, less challenging ones. I stoppe...

 11:13 am      This morning I had one HD at 6:40 am. I waited until 9 am to take the Acetazolamide because I had an upset stomach and I didn't want to make it worse.      I hate taking pills but damn I hope this one works. We will see. I will update as the day goes on. 12:42 pm      The medication I'm taking is making me sleepy, very sleepy. I also noticed I have been highly emotional. One sad or sappy thing gives me tears and makes me weep. I hate crying so it's really irritating.       So far, no adverse reactions. A few days like this would help me so much. My shoulders and arms have been killing me the last few days. All I want is a nice relaxing massage and a good night's sleep. Oh and a tasty meal that doesn't cause my stomach to hurt and burn. 

Questions and Answers   I am s till uncoordinated, unbalanced, w eak on the right side - it will take time but I am very strong and he thinks I will make a full recovery. I feel like I have had trouble sending messages to the LEFT side on and off for 2 weeks now, when I want to grab it's like sometimes my left hand and wrist don't  know how to go about it. It will move forward instead of the back or vice versa - maybe I am having trouble because I am scared my left side will fail me and now I depend on it. I do not agree with him but will humor the idea. 🙄 Disability - I need it since I couldn't work for the last 3 months. What is my disability score?  - he will try to get it going but he is not sure he can do it for California since he is an Oregon doctor and based in Oregon. Work note - he will call me next week and see if I still need it MS Specialist - he will send the referral  HSCT - I didn't ask. I will wait for the MS Specialist. Muscle Spasms and m...

9:00 am      So I woke up and didn't have a spasm. YAY     B ut the Tecfidera has been making me feel sick since yesterday evening. My stomach is burning 🔥  and I feel like I'm going to puke, separately I feel gasy. I just feel so sick.       My left side has decided it wants ro mess with me. It's clumsy, uncoordinated, and acts like it doesn't know how to go about doing what I'm telling it to. This is unbelievably frustrating. I just want one normal day.      I'm might be having another flare. I hope not. I don't know how long the Tecfidera takes to work but my left arm all of a sudden doesn't know what it's doing. Couldn't get my towel off my shoulder to wrap around me. Was having trouble with my fingers. I kept getting my fingers tangled in my hair when I was washing it. This is shitty.      I'm getting together a list of things to talk to my doctor about tomorrow. This is what I have so far; Still ...

     So this morning I was able to get out of bed and use the bathroom before the spasm hit. It was a nice change of pace. I am praying that this means things are getting better but if they are it means the muscle spasms were influenced by my menstrual cycle.      I am glad in the sense that this would mean that I wouldn't have them as often but I am disappointed that I will dread my period even more now. Only time will tell for sure.      I stopped taking the baclofen. I didn't take it at all yesterday which proves that it wasn't doing anything.       I have been working to improve enough to return to work. I miss being independent as well as not having to rest like an 80-year-old. In fact, I think an 80-year-old would have more stamina.       Having MS isn't fair. I pray the Tecfidera is working. If not, it would mean my MS is aggressive and that I would need to take some serious measures because I do...