What does MS look like to me

 Multiple sclerosis is different for everyone. For me it’s blurry vision in my right eye all the time and occasionally in both. It’s the top of my foot being numb. It is not always being able to control things that my body is supposed to do. It is difficulty swallowing at times. It’s nerve pain in my arms. And it is fatigue there is so much fatigue. I was so angry when I got the diagnosis. I mean I already had two other neurological conditions. I had a flare and had to have steroids lots of steroids. It was the fear that I might actually have neuromyelitis optica and not multiple sclerosis. Then, it was immense relief when it was “just MS”  it is learning to stop and rest because my body cannot recuperate like it should. It is fear. It is sadness. It is all of the unknown. But there is also hope.

It has also been an outpouring of love and outpouring of support a reminder of who my friends are of who my God is. It is an avenue that will help me show better support to my patients. It will give me a different type of understanding for what they go through. It is slowing down to spend a different type of quality time with my family. It is a reminder of how deeply my husband loves me and how well he loves me. It’s a reminder not to take little things for granted. It is a reminder to never give up.

MS is not a death sentence it will change my life forever but not necessarily for the worst. There are new struggles, but in those struggles I will find new strength. I got a phone call today from a dear friend and the first thing she told me was that I am a warrior. I have not felt like a warrior I have not felt strong I have not felt positive I have not felt hopeful I have let the fear and the grief overtake me. But that is getting better. I’m letting the hope win.  I’m letting the positive attitude win. 

I have an amazing provider who encourages me and reminds me it’s going to be OK. She’s always there for my silly questions even when I know she would probably like to tell me to shut up. I have amazing friends and have been there for me through this have listened when I wanted to crawl who checked in on me to make sure I was OK. I am one month into treatment and I am so blessed I have barely any side effects. The last week the fatigue has been so much better. I have a “mild “case and that is a blessing. I am well aware of how much worse it could be and very thankful for what it actually is.

Thank you all for the love and support that you have shown me.The news had spread a little bit and I preferred that people who cared about me find out from me and not because someone else shared my business on Facebook. I wasn’t ever going to say anything but I felt like it was time to share my story to share my  vulnerability. Writing it down also helps to release the negativity and embrace what is positive in this life.

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