September 6, 2021 - Mourning, The Anger Stage

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 stopped saying "it's better me than someone else" because that was ridiculous. It's better to NOT be me as selfish as that sounds. I can't help but wish it on murderers, rapists, and child molesters instead. I even sometimes wonder why not someone who ended their life early, someone who died drinking and driving, someone who died of a drug overdose?

I blame our health care system, politics, religion, and people who have their heads so far up their ass that they can't concern themselves with anything that doesn't promote their beliefs or themselves in some way and it's disgusting. Modern medicine is a joke. Pharmaceutical companies only treat symptoms and don't cure disease so I am stuck waiting for a cure and taking 4 different medications that make me sicker than shit just so they can bathe in their greed while the sick get sicker and the world remains obvious.

It doesn't matter though...

Comments

September 1, 2021 - Tummy Trouble

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...

September 16, 2021 - Prednisone 50 Pills Per Day, 20MG for 3 Days , Update

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...

September 17, 2021 - Embarrassing and Uncomfortable Moments

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...

My MS/HSCT Journey

Search This Blog