Hello Everyone, Well it's a new week and a new chance to move forward physically and mentally. Last week was definitely upsetting and frustrating, but that is in the past now. I need to prepare for my next appointment with Dr. Beall on April 23rd. He will be ready for the next step for me and my treatment plan. Keep moving forward!
I know some of you are worried about me and some of you are also a little confused. Please remember that this was NOT a second opinion. This was a suggested path of treatment for me AFTER I received my diagnosis from Dr. Beall. He told me from the beginning that he felt I was a good candidate for this clinical trial, but that didn't mean I would definitely be accepted. I did not meet the criteria that the researchers want for the patients participating in the trial. So now we see what other avenues Dr. Beall wants to take with me.
As I said before everything happens for a reason, so I have been trying to see why it took so long for me to get my answer. One thought I had was maybe with all the delays and problems they had just getting me screened for the trial, maybe that is how the whole trial will go under this particular researchers watch? Maybe that would have proven more harmful than beneficial for me? If the whole trial was going to continue like this then maybe this is for the best. I certainly wouldn't have seen that if I had not been given the run around for the past four months. Maybe not, but it's a theory.
Maybe it will be more beneficial for me to try this drug once its been approved by the FDA and all the "bugs" are worked out of it? Maybe it will have no benefit to me at all? Who knows? But I have accepted that this is not the path for my medical treatment and am hopeful and ready to begin whatever Dr. Beall suggests. Lord knows I've been patient!
As far as how I've been feeling lately, I have been shaky and clumsy. Still really tired and napping alot. No double vision the last couple weeks, just blurry & cloudy spots. Pinpoint head pain has been really prominent. It's not really a headache. It just feels like different spots on my head get sharp, throbbing or stabbing pain. It is really bad when my mind gets foggy. That definitely has been more bothersome lately. The foggy brain and inability to focus or concentrate. That's been fun because since the Detroit papers have slowed their delivery we took over delivery for all the other papers like USA Today, Wall Street Journal, etc. Trying to keep all that straight at 3:00am and make sure everyone gets the right paper makes my head hurt. The first few days I had to fight from crying over the frustration. I just talked myself down and thought "go slow and it'll all work out". It did, but six different papers...WOW, too much!
I don't know if I mentioned it, but I bought a cane. I don't need it all the time, but it definitely helps if I need to walk alot or far. Especially at the end of the day when I am most tired. It helps keep me steady when my balance is off and when the numbness in my right leg is bad. It certainly makes me feel more confident when I have to walk with Paul to pick up Kristina from school. I am less afraid I am going to fall. When I do feel like I might fall, I at least feel like I am helping myself. I don't use it at home or on my route, that seems pointless. It really depends on the kind of day I am having, but I had read about this in the book "Women Living With MS". Many women said that once they started using it they hadn't realised how much energy they were wasting just struggling to keep upright. They weren't kidding. Most times when I am walking without it, no one would ever know, but I am repeating in my head over and over "Don't fall. Don't fall. Don't fall." I even picked out a pretty one. It's a soft green with white flowers. Hey! If you have to have it, then have it on your own terms!
So I hope you can tell I am attempting some optimism here. This will not break me. A little mind over matter. I may be a person living with CIS/early MS, but I am living!!
Love to you all, Tammy