Skip to main content

September 27, 2021 - What Is My Future? Has Everything Changed?

    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. She/he was sweet like my mom, strong like my grandmother, logical like me, intelligent like Kurt, beautiful like Dottie, caring, feisty, fierce, amazing, and nothing could tear them away from me. Now MS is. That little blonde child will always be my vision of the future and I am dying for it to manifest before my eyes.

    I should have thought of this sooner. I want to change my mind but I don't want to relapse again. I'm heartbroken and I don't know what to do but I see my future with children slowly slipping away. I wanted at least one of my own. Maybe we can still make it happen. I have faith. It just hurt my heart for a moment.

    In fact, a lot of things are starting to feel like they are getting further and further from my reach. HSCT treatment is expensive, so I feel like I am going to have to pick between that and a home of my own. I had a plan to not get pregnant until my 30's, save for a home, and have all my ducks in a row.

    I drank my 20's away and spent all my money as soon as I got it. Not getting pregnant was the only thing I did right and now that feels like it would have been better if I did. This disease is really changing everything for me a little at a time and I'm handling it all the best that I can but it's really pissing me off.

    My future seems so unknown now. How will this disease affect me? Will I end up in a wheelchair or bed-bound? Will I even be able to care for kids or have a career? Is this fair to my husband? It's definitely not fair to me but it's my disease so how am I going to deal with it?

    What happened? Where did the time go? What happened to my life? I wish I could have one more go at it. Can I fix this? Yes, but I need more time. I can't get caught up in what has changed. 

    I have accepted having multiple sclerosis but there is still so much still to accept, to learn but I can't give in. I can't give up. I'm digging in and preparing to launch forth through whatever this disease puts in my path. I won't let it win. To me, this disease is a demon. A demon sent to destroy and break me down but my spirit, my soul is stronger. This is what I tell myself so I hold it together and so I don't lose myself.


Update: Pregnancy while on Rituxan is okay. What a relief. I should do my research before stressing over it! This will also prevent emotional posting and sounding extra tragic. 😅


My older sister Dottie and I.





Comments

Popular posts from this blog

The Mobilization to the Transplant - 7/24/23 to 9/15/23

 7/24/2023 We are going to leave for San Diego soon and my anxiety is starting to surface. Today I feel impatient. I just want to get this going. I woke up last night around 2 AM with my arm, from elbow to wrist feeling like I had a rubber band wrapped around it. I don’t know why this happens, but it seems like it happens most when I am really tired, or I don’t eat well earlier that day. It might be an incentive to be better at rest and food intake, but I hate it. I wake up and I am unable to get back to sleep leaving me more exhausted until regardless of the symptoms I finally fall asleep. Honestly, I am hoping a lot of these things will improve or disappear completely with HSCT but I am not naive enough to rely on it. I will just be happy if the MS goes into remission. I would love to wake up without worrying that a new symptom will mean an MS relapse. I am exhausted of MS and I haven’t had it as long as so many others have. 7/26/2023 - Hilton, Gun shots??? Tomorrow is th...

Dr. Burt's Clinical Trial for RRMS Part 4 - Better Late than Never

Today was my consultation with Dr. Burt. I kept thinking at least you are going to meet him. You are going to meet the pioneer of HSCT. I never knew what star struck was but I was immediately hit with it and my mind went blank.  He was so passionate about his work. You could tell by how he explained everything in such understandable detail. All the things I had learned about MS suddenly went blank and he turned into my new teacher. I listened intently as he explained HSCT and sudden platelet drop and soon he said something magical. He said he believed HSCT would benefit me. He accepted me as a patient and he even discussed my treatment with my MS specialist. I was floored. I was relieved. I was in such shock that when he asked me if I had any questions, my mind was empty. I had some questions but really wasn't ready.  Usually at appointments like these, I have a list of questions and at the end of the appointments, I go through each one quickly but this appointment I hadn't do...

September 30, 2021 - To The Bone

     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...