I apologize for not being around. Well I have been around, I just haven’t been able to type or do much of anything. Life has been crazy and pretty much a whirlwind for me. I won’t say that I haven’t cried because I have done a lot of that lately. Some from pain some from frustration and some from sadness.
I am still in shock of the diagnosis and the more I learn about the disease, the more I feel depressed about it. Multiple sclerosis is a defeating and demeaning disease. It will truly put you in your place It has no sense of humor at all and it thrives on embarrassing you whenever it gets the chance.
Ju when you think you are going to be OK with it, it smacks you in the face and says that you are going to do it the way it wants. I was blacking out as you know so my Dr immediately put in an emergency order for two MRIS.
I wasn’t able to leave that day until she received the results. The hard part was laying still for that length of time during the tests but I tried. It was started and restarted numerous times because of my muscle twitching. It took hours but felt like a lifetime.
I sat down with a couple of wonderful friends who were there for support while we waited for the results. Once they got the results, I was came back home and found that it was indeed Ms. I then had appointments sc with a MS neurologist who then scheduled an immediate lumbar puncture or spinal tap.
I was at the hospital from 7:30am until 4pm. This was because the neurologist had requested more fluid than normal be removed for testing. I had to lay flat all that time. The next day was horrible and horrendous..I experienced the spinal headache of all headaches. It is a week later and I am still not fully recovered. I have actually experienced total paralysis and that is new.
I have went and got fitted for my leg and back braces, will get those in two weeks. I have a half hour of blood work scheduled next week and then I have three days of iv steroids infusions scheduled for the week after that. We know that I have Aggressive Progressive MS. No one has seen this before so early on This is generally the most later of stages. My MS neurologist is baffled.
She is unsure of what to do and where to go from here. She is consulting with others. I just want a medication regimen so that I can get a some form of normalcy in my life. Right now I am living with multiple sclerosis and I am taking nothing for it. I am being treated for depression and anxiety but that is just a bandaid.
I am tired and I just want to cry I do get emotional about it. My mind says that I can do everything but my body says nope.. On my birthday I collapsed between my bed and the wall. I was there for over an hour and hour or more. I couldn’t get up, I couldn’t call for Rick who was outside and I couldn’t get to the bathroom. It was humiliating and such an eye opener of what was to come.
My life is changing and my lifestyle has to change..I am not ready but I no longer have a choice.. MS took my independence and my voice. I still have my humor and I will bring it out more…. That I can promise you !!!!