This is MY journey with MS! I give you my thoughts, feelings, hopes, and prayers. My wish that one day this disease will come to an end. That one day there will be a cure. For now, I hold on to possibility. I HOPE this will help and inspire not only myself but others.
 
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Time To Think....

It has been a quiet weekend at my house. Nathan left last night for Boy Scout camp and won't be back until later tonight. I am really happy that he has gotten involved with the Boy Scouts. I think it will be a great opportunity for him, not to mention he will just have a lot of fun!

I have been doing a lot of thinking lately. I am trying to figure out how I am going to make everything work.....maybe this is why I have been having headaches? I am thinking too much? No, I don't really believe that, but it sounded good, lol. I sent an application into MSHH yesterday. It would provide help up to $1000 towards my spend down, if approved. The application process can take 45 days. I am trying really hard not to give up hope but the reality is that I am going to have to go without my medication for awhile. I just don't see at this point how it can be avoided. I have two doses of Avonex left (one of which I will take tomorrow) and am quickly running out of my other medications. I have applications in to several places, but it all will take time. I am sure these companies get hundreds of applications a week....so now I just have to wait and see what happens, if I will be approved and if so for what kind of help (based on the type of application...insurance coverage, rx help, etc.).

I am worried about what all of this means for my health. I know it will only be temporary because eventually (even if that means in 2 years when Medicare kicks in) I will have the coverage to go back to my doctors and get back on my medications. What does this do to my health and my body in the meantime? Will my illness progress? Will I become more disabled? What about my son? This is all scary to think about. I have so many mixed feeling about all of this. There is the part of me that wants to fight like I always have and then there is a the part of me that is so exhausted I am not sure if I have any fight left. I try really hard not to be upset or angry about my situation, I am not alone! I know there are others out there who are also in this situation, either because of MS or some other disabling illness. Sometimes I can't help it. Sometimes I can't help but to just want to scream or cry.

I feel like I have done everything in my power, everything I knew how to do to try and secure a life for myself and my son, and it just has not been good enough. I worked, paid my taxes, paid my bills, saved what little money I could (which has almost all gone to medical bills, by the way), I have an education. I did everything I could, but my illness, just like many others with MS hit before I could get my life situated in a way that I had a good amount of savings for my life. I had enough to support myself for almost a year while waiting on my SSI/SSDI application, and that is more than most people have these days.

Don't you all just hate the ups and downs of this illness? I know I do. I really do try to be positive and try to stay upbeat but sometimes it is so hard. Sometimes the reality of it all just grabs a hold of you. I don't seem to have a lot of energy these days, my fatigue is great. I have had a lot of pain lately and it seems that I almost can't get out of bed, I am weak, not as much physically but that I am exhausted for some reason. Which is strange since I have not really been doing anything, nothing that should make me tired and/or exhausted at least. I don't think that I am sleeping really well. That may be part of the problem. Don't get me wrong...I am sleeping, just not a restful sleep. It seems that I am getting enough sleep, but when I wake up I am still so tired, exhausted. It is like I have not even slept at all. I have even been having moments where I am so tired I can't keep my eyes open or I fall asleep in the middle of something, talking to my son, etc. Why am I so tired? I always have fatigue, but usually only when I am coming down with something does it get this bad. I wonder if the heat has anything to do with it? Whatever it is...I wish I could just get some of my energy back!

I am feeling a bit isolated and anti-social these days. Which is strange, because that is not my intention at all (or my nature, I used to be the life of the party, lol)...it has just kind of happened that way. It seems the only real contact I have had (besides with my son, is with my parents). That is not good. I need a life again. That is the worst part of this illness! How do I regain my life? I think that is the real question of the day! When you don't have the energy from day to day to do things and your body is weak, how can you live your life? This is why I was working so hard with my doctors, a nutritionist, a personal trainer, a gym. This is why I have been trying so hard to be as healthy as possible so that I can have my life back! Now my hands are being tied...does this mean all this work was a waste of my time? Should I have been out living life to the fullest with that money I saved up instead? Having fun doing the things I have always wanted to do that I may never get the chance to do. I can't change that now. I just don't know what to do anymore.

I am sorry for sounding negative, because as most of you know by now...negativity is not really my nature. I do try to be upbeat and positive, I just am at a loss right now. I am trying to stay positive that between the different places I will get the help I need, but I am fearful that the time in between may do enough damage to my body that I will have to start all over. I don't know that my body can handle that! That is my fear. Once the damage is done, it's done...there is nothing I can do. That is the problem with this illness (and MS is hardly my only medical problem, unfortunately). That is why the meds are important.

I guess it's in God's hands now and I just have to have faith! So far I have been very blessed and always taken care of. No reason to think differently now, right? I am sure that everything will work out....somehow it always does! I just hope I don't have any health issues arise in the meantime. :) I hope you are all doing well. Please take care!

2 comments:

mdmhvonpa said...

I feel like I have done everything in my power
Hope, faith and prayer --- when it seems that there is nothing left. I know it sounds cheesy, but I've come to realize that I could have not possibly made it this far without them.

Jaime said...

I do understand that. Life in itself it a miracle! I probably should not be here because of my health in all reality and here I am. I really have been very blessed....somehow things just seem to work out. :)

It is just unfortunate that we are constantly put through these trials that seem oh so impossible at times, but I am sure you have heard the saying that God will never give you anything you can't handle. I believe that! I have to. Otherwise, I think I would go insane by now, lol. Sometimes it just gets a little hard to handle and you need time to think it out (and vent). :)

I hope you are well. Please take care.

Jaime


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I was diagnosed with MS in 2004, have been through all of the FDA approved treatments I qualify for and now am participating in the HALT MS Study. This is my story...my life with MS (among other things).

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