My Support

 I have been on treatment a few months. Maybe I started in September, I do not know. I am bad with dates, and this is not a happy one to remember. But it is. A little I guess. I am facing an old disease, but with new weapons. Science is grand. I am so blessed. I started to feel better within weeks of starting it. It was amazing. I did not realize exactly how bad I had been feeling until I felt better. Progressive diseases are like that I guess. It all happened so slow (yet so fast),  that I did not realize something was wrong. 

The fun thing is, my migraines are 90% better. I have been able to stop some meds. That is exciting. My endurance is improving. I know part of it being down is the more sedentary lifestyle since covid. Hospitals are opening back up though so that is ending. Again, thank God for science and vaccines. The scale is moving down instead of up for the first time in months. So much good. 

The struggles are that though there are almost no side effects to my treatment. There is one major one for me. Hair loss. I knew it was hard for women to lose their hair. Those women are aways so beautiful in my eyes. I didn’t KNOW how hard it was for them. I still do not know, but I have an idea. I have lost half of my hair, and apparently my identity. It has hit me like I would have never believed it could. I have cried SO MANY TEARS over HAIR. That same hair that does not steal other women’s beauty, has apparently taken all of mine. It does not matter that “it is not noticeable to others” “you can’t really tell”. I CAN TELL. I see the bald spot. I see the 1/4 strip of fresh growth around my face. I see part of me gone. It is silly. I AM SO GRATEFUL FOR THE MEDS. I AM SO HAPPY I AM NOT TAKING SHOTS. I am so sad over my damn hair. But that will all be ok. It is growing back. I am still the same person. I have not lost anything. There are far worse battles to fight. It is truly a minor thing. 

That takes me to my support. Your support. Your love. Your shares to raise awareness. You money donated. It gives myself, and others like me, others with more struggles, answers. Treatments. Relief from symptoms. HOPE for a cure. Thank you for signing up to walk. Thank you for showing your support. Thank you for loving ME. Insecurities and all❤️

Comments

Post a Comment

Popular posts from this blog

My Story- The Year that Changed My Life

 We are a year in to this journey we never wanted to take. 1 year since my world felt like it may crumble around me. I can say I have MS. Sometimes without tears. I say it often bc I need to desensitize myself, I think. I also want to normalize it. Life is good, but there are struggles. Blogging helps release the stress. It also may help a new to MS’er one day. It is good to know that it is okay to mourn life as you knew it. It is ok to not be ok some days. I tend to come here when it is less ok. That is when I need the release of writing it down.  This last year of isolation and loneliness has been tough. I have learned that sometimes the relationships you thought were unconditional  come with conditions. There has been what feels like an irreparable divide in relationships that were the most important to me. And in the midst of that, I was told I may have a tumor, or a stroke, or MS. MS was in many ways the lesser of the evils I was facing. I am thankful for the diagnos...
Read more

My Scare- the MRI follow up

 So, I had my follow up appointment. Before my scans, I tried to prepare myself for it to have changes. I had 2 flares after all. I WAS NOT PREPARED. I wanted to be. Tried to be even. I was not. I had to go alone to my appointment, and there was a resident. She started by asking me if I had decided what medication I wanted to switch to. That was not the way to go. I just cried. You see, I did not know that would be a question. My lesions were not active. I HATE change. It got better from there.  Dr. Chenault came in next. She told me it was reasonable to presume the lesions were from my flares last fall. I do not have to change treatments yet. I have to see the pulmonologist next month. If she thinks my sickness and breathing troubles this summer were related to my aubagio, I will have to change. Then we will rescan in December. If pulm clears me and my scans are normal, I get to stay the course. If there are changes, we will face that then.  In other news, school has sta...
Read more

Many Steroids

 I reached out to my neuro yesterday. I have been miserable since getting sick 2 weeks ago. I hurt all over. I have random numb spots. And the incontinence has returned. Some days are amazing. Some days you put on your paper panties and find the amazing parts on your own. Today I start steroids. They will be the equivalent to the amount I had via IV a few months ago, but in pill form. I will be taking 72 pills in the next 3 days. Wowza. The pharmacy thought the doc made a mistake. I will just be over here binge eating and not sleeping for a while. But no worries- I will feel better again sooner rather than later and that is amazing. I am so thankful for modern medicine. I am so thankful that my struggles are less than those of the MS warriors of the past. I am so thankful that I have the husband I do. He loves me through it. He empathizes. He holds me up. He reminds me how blessed I am. He keeps me smiling. And life is good❤️
Read more