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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We Were Meant For So Much More (with music!)

Okay, so this title is a little too deep, but it really goes with the song I wanted. I know I have really been on my soap box a bit too much lately, so I apologize for that. I guess it just seems that sometimes you need to speak up about things when the system is not what it needs to be.

As I start to think over the events of this week and how things have unfolded, it is amazing to me. I have somehow responded very much as if I was once again told I have MS. That is just stupid! I know that I have not been feeling well, and I have been depressed because of a variety of things (meds, not feeling well, tired, etc.), but I am stronger than that. I HAVE to be. I have to pull myself up from all of this and find a way to make this work. This is the conclusion that I think I ultimately came to by the end of everything yesterday, and so I think I have got it.

At the beginning of the week, when all of this started to really fall apart, I was like someone going through the 5 stages of grief. I really showed the signs of denial. This can't be happening, there must be a mistake. Who are we kidding? I am still somewhat in denial. I can't believe this is how the system is set up. I believe we are meant to have better. I KNOW we deserve a better system. Anyway, I was pretty sure that there HAD to be some other programs out there, even though I was getting the run around. I was right, I kept digging and did not take no for an answer, and found out some information (I will get into that in a minute).

The run around, that led me to the next stage. Anger. I don't think I really ever hit the why me part as I have never really been one to ask that question. More than anything it just made me mad. I really got angry, had some serious hate in me, an anger I have not had in me in years. I did not think I had it in me to have that kind of feeling, actually. It scared me to think I could actually get that angry, almost hateful. I have worked very hard to be the kind of person who does not hate, and to think I could get that upset, then brought on guilt. I don't think that is one of the stages though.

Depression is actually the 3rd stage, and well I have been dealing with that all week. I really do think that the Avonex has a lot to do with that. I have never really been a depressed person and the times I have been sad or whatever have NEVER been like I have been this week. I had uncontrollable crying and everything. It was crazy! I am sure that it will come and go too, just like all the other symptoms do with this illness.

Acceptance is the next stage. I am okay here. I am accepting that the government has these laws and regulations, and I am okay with that. I don't agree with them necessarily, and as I stated in my post from last night, I think these things should be based on factors like what the disability is, # of people in the household, cost of living in the area. Things like that. I don't think it would be fair for me to get the same SSDI as someone living in New York City. I know for sure it cost A LOT more to live there. They need more to live on and support themselves and their families. That type of thing. I am accepting what I can control though. That is what I can do. I have made many calls and that leads me to the last stage.

Stage 5: Getting Help. Well, the only help I need here is a medical insurance policy. But, I think I have that figured out. After about a dozen people tossing me around through different phone tree systems and telling me I had no other options just pay the money and take that plan, I told them no. There had to be some program for working people, low-income people who don't have SSI, SSDI, or other insurances, what do they do? That is where they then were like, well, um, there is this other program but you don't want to do that, it might not be as good of coverage.

Well, I used to work in medicine. So, I got the information, I have contacted the company and am getting all the benefit stuff sent to me so I can compare coverage. It looks as if for a small premium each month (which is a lot less than $3000/year) I can get a basic plan that will cover all of my medical appointments with just a $15 copay, including my specialist. All but one of my doctors are providers, and they will cover hospitals, chemo, home health, etc. The coverage turns out is not that much different that what I have now. The main difference is I have a pay a little more and there is no coverage for durable medical equipment. There is a deductible of $150. Plus, If anything major happens, it turns out and with the SSDI I will always have the spenddown available, so if I ever end up spending $3000 out of my own pocket they will kick in as a secondary to my insurance that I have purchased. They don't cover the meds real well either, but there are ways to go about that too.

See I knew there were things that could be done. It just upset me for them to tell me there was nothing I could do. That was probably their first mistake. I didn't do well when an insurance company would not cover things for my patients when I worked in medicine and I always went out of my way to make things happen for them, and was KNOWN to get things done. This was just the fuel I needed I guess.

So, today ended up being a good productive day for me. I have been feeling a bit better. Still very tired, maybe that is because I am not sleeping well. I think I have been so upset and let this get the best of me. I can't let that happen again. The stress is not good. Tomorrow should be a quiet day. I am going to Seattle to see my GI doctor and my Nathan comes home. He is so cute he sent me a letter from camp. He caught a fish while camping, and was saying how it is bigger than the one his dad caught. :) He is having so much fun! He will be home tomorrow. Yeah! Well, I hope you are all doing well. Please take care of yourselves and have a good night. Happy Friday tomorrow! Remember to SMILE!


Michelle said...


Rogers Market said...

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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 life with MS (among other things).

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