First of all, I want to apologize for not blogging in ages. While I was having my Lemtrada infused I just felt too ill and tired to write so I did some videos. Afterwards, I was so fatigued for a week or two and though I was slowly feeling better my dizziness/vertigo/oscillopsia/whatever was getting worse. Now it is to the point where it is difficult to walk. Just trying to “navigate” around my room causes me to stumble and sometimes even fall (luckily I have a nice soft bed to land on). Even when I am perfectly still thing are swirling. It’s also like I just can’t focus my eyes! It’s horrible, I can not even explain it simply.
Anyways I just feel so defeated in life. I can’t catch a break with my health after about 8 months. Social Security finally decided that I do in fact still owe them that 25 thousand dollars because despite the information my doctor provided and notes he wrote they know what disability really is, better than a neurologist who has actually SEEN me. I am 25, I can barely walk, I can’t drive, I WANT to work but can’t, am struggling with my bills and Social Security doesn’t think I even deserve SSI. I don’t want to and will do everything I can to avoid filing for bankruptcy because I am only 25! But I am just so burnt out and can’t think of a better strategy yet… I keep trying to push myself to blog but I just do not have the energy or motivation to talk about my life right now…
I am going in for Solu-Medrol tomorrow which I have lost all faith in but what can I do? I did Lemtrada, lots of Solu-Medrol, Solu-Cortef, and IVIG. I have tried many other things in the past with no luck so after this, if I see no results, I have to start trying the alternative therapy stuff, mainly cannabis oil is what I am looking at but to get the stuff that has almost no THC and only CBD (no high) is expensive. But I am so desperate! I can’t live on like this so either I have to find a way to fix it or deal with it and I really do not WANT to just deal with it… So I don’t know, I am just living one day at a time till something changes and then I will have lots to write about.
For now? I am just taking it easy. So I hope everyone is doing well and I will be back as soon as I can. Be sure to check out MultipleSclerosis.net for my posts there, it’s much easier to write about MS when it does not revolve around my daily life.