I am so sorry to have to finally admit that MS has beaten me down. It has gotten me depressed and irritated to where I no longer like who I have become. I don’t want to be around anyone either.
I am questioning if maybe I should go and seek help for a few days? I have lost all zest. I have found myself on the floor three times this past week and I have gained some weight back.
I don’t leave the house unless I am going to the doctors office. I go to the doctor and then back home. I don’t go anywhere else. Sometimes I am rushed there too. I watch the traffic. Sometimes my husband gets frustrated with me. He is rushed and impatient with me.
I did not ask for this. I don’t want this.
You truly realize all of the things that you take for granted. Things like, taking a shower, going to the bathroom, brushing your teeth, getting into bed, and more. But all of these are gone. My own independence is gone. I am unable to jump into the truck and go wherever and whenever I want.
Everyone else’s life has continued to go forward but mine has slowed down and I have been left behind. I feel forgotten. If I promised not to mention my handicap to anyone, do you think people would call or come over? Would they remember me more often than not?
I now have a complete understanding how some people who have MS can succumb to the symptoms and end it all.. It’s not about being selfish, it is about finding a precious moment of relief. It is not about being a hindrance to those around them, it is about a being a normal being.
I used to be the most optimistic person you could ever meet and I was also extremely humorous. Now I have a hard time with depression. I choose to remain silent. Silent and in the darkness.
My condition was described to a facility that was going to be doing my infusions as aggressive progressive and in a state of constant relapse. In other words, I get no relief.
I have been off any form of medication for three months now. I have been waiting for my insurance to approve my new medication (infusion). It is extremely expensive and brand new. But prior to the approval, I had to have numerous tests done. Extensive blood tests, Abrasive MRIS, EKGS, Mammogram and other tests.
Once you have the results back, then you get the insurance started towards the approval. Then we have to get started with the makers of the drug. They have programs that are available because the drug costs $65,000 per infusion.
You have one infusion, then two weeks later you have another one. Then six weeks later you have another one. Each infusion is six hours long. I can’t have my infusions done at my MS Neurologist because I have to be constantly monitored so I have to have them done at the Florida Cancer Specialist. Now I am waiting for them to call me with an appointment date.
That’s what I have been dealing with for the past month.
It is getting hard to exist.
I would give anything to just have someone who I could talk to about all of this. It is overwhelming but I am not seeking pity.