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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A Roller Coaster of Emotions

What a day today has been. I have been on this emotional roller coaster lately in regards to how I am feeling both from a medical and mental standpoint. I have been under a lot of stress and it seems that I just can't handle stress like I used to. What is that all about anyway? A couple years ago it seemed like I did better when I was under stress. That was my coping skill. Now I just fall apart.

It seems as if I should not have as much stress now that I am not working. That should have taken away the bulk of my stress. It has helped, but it seems that as aspects of my health has gotten better (my asthma, allergies), other aspects have progressed (my MS). I am sure it is the natural progression of the illness and as it is unpredictable, it is likely that just as it has progressed, next week I may feel better and not have another relapse for a year (I can always hope). You just never know. I am sure all of the stressors lately along with starting the new medications and the most current relapse that I have been fighting is only making it more difficult for me to get to feeling better. This is the constant battle.

Speaking of current meds. My PCP freaked me out the way he talked about how interferons have "major side effects". He has used them quite a bit to treat hep c. I looked into it. The interferons for hep c are alpha and the ones for MS are beta. The side effects are a bit different. Some are the same. One that I am a bit concerned about is the depression. I am noticing that I have been depressed a lot lately. I am not even a depressed person. The Avonex mentions that depression can be a side effect and I am noticing that each day I seem to be more and more depressed. I seem to cry for even stupid little things. Then I feel stupid about it and that makes me cry. It is like this big cycle. I hate that. I think this medicine is screwing me up. All of this stuff going on stresses me out so much that I couldn't help it and spent most of the morning crying in between phone calls while I was looking into ways to figure out what my solutions are. There are some things that can be done. There are a couple of low-income health insurance plans I may be able to get on to, it won't have real good coverage, but it would pay for my doctor's appointments and buy me a couple years until the Medicare kicked in, and I could qualify for a Medicare supplemental insurance plan. Then I could apply for a prescription assistance plan for my medications. I have been very busy making phone calls today!

One quick thing from the soap box: This really upsets me. I had one state agency tell me today that basically people with disabilities are not given any more respect than those who live off welfare, and the ones who are SSDI have it even harder because they are penalized for working. The reason I would have the pay the roughly $3000/year in order to get the medical is because how it is explained to me is that people with disabilities who want medical coverage are only allowed to have a certain income (varies by state = SSI amount) If your SSDI is more than that amount then for you to get medical you have to pay that amount in medical bills before the state will help you with medical bills. So, I get the full SSDI amount allowed in my state, which is ~$256 more than the full SSI amount allowed in my state, therefore I would have to have that amount in medical bills (or spenddown so my income is actually the SSI income) before I qualify for medical. Therefore you are penalized for working. No one should be penalized for working or disabled. The policies should be the same, based on disability, family size, cost of living in your area, and need (i.e. medical bills). This is what should determine what your benefits are in my opinion. I am glad that the benefits are there and available and appreciate what the system was designed for. I just think that somewhere, somehow things got screwed up.

I include all of this because I was told by my doctors and the representatives at the state who helped me when I filled out my application for SSI/SSDI that it was in my best interest to apply for SSI/SSDI because I was no longer able to work. My health is fragile and because of the major health issues that I have (MS, history of cancer, GI, Asthma, etc.) that this is the only way I could guarantee to have medical insurance coverage for me and my son for the rest of my life. I was told that I was no longer insurable through private health insurance companies and unless I got a job with a big company which offered group insurance, which would be difficult to do with the MS because of how unpredictable it is and that I could not guarantee a company that I would be a steady employee, I would never have another way to get medical insurance. I am on about 20 meds each day, I see 4 specialist a month, am being monitored for multiple medical issues, and most importantly have to keep it all together because I am first and foremost a mom.

Now, I am in a position where I may have to go without medical insurance for up to two years. I am not sure that I would have had it any different if I did not go through this process, and I would NOT encourage anyone not to apply. I DO encourage you NOT to get discouraged as I did if you are let down when you finally get your SSDI approval only to find out that you may have to go for two years with little to no medical insurance. I would hate for someone to go through the stress and misconception that I did, that I would have my worries taken care of, FINALLY. Just please be aware that when you get that approval that may not mean things will finally start to get better, it just may be the first step. That is how I am having to look at it. As the first step on a very long road ahead. But, please keep looking forward, somehow, someway, it HAS to get better.

I have decided after spending most of the morning upset, sad, depressed, and crying. Then the afternoon angry, mad, and asking myself if I have made the biggest mistake of my life by even doing all of this. I thought to myself maybe I should have ignored this illness and just went on as if it did not exist, but then there is reality, how long could that really have lasted? I wasted a good part of my day today, for what? A bad day. I guess I needed that. I have really had a lot of those feelings lately. I guess we all have those feelings sometimes. But, I am tired of those feelings. I hate having those feelings. I just don't know how to make those feelings go away sometimes. So, I try and tell myself that I am not going to think that way. It is not always that easy, but that is what I am going to try and do. I have decided that each morning I am going to try my hardest to try to smile and make the best out of each day. Dave reminded me today that I needed to smile. :) (Thanks!) Sometimes it is just that simple.

My ex-husband Justin is coming into town tomorrow. He is being a sweetheart (yes, we have an interesting relationship!) and driving me to Seattle on Friday. I have an appointment with my GI doctor. Nathan will be home on Friday from camp too! I am so happy about that. I also decided I needed to get out of the house, so I signed the three of us up to volunteer at the MS walk this weekend. I wanted to form a team to walk (not sure I could walk it, but I would try to make it as far as I could) but I was not sure if my dad would be out of the hospital or what would be going on. He is doing great though. He had a follow-up yesterday and the toe is healing just fine. Well, I hope you are all doing well. Please take care and Smile. :)

Just as I was about to close this out, my mom called. She told me that I need to always fight this and think of it as if it was some insurance denying one of the kids in the nephrology clinic I used to work in something they needed. I would have fought for them, so I need to fight for me. I hope you all have a good night.

Music choice:
DRIVE (Incubus)

Video Code provided by VideoCodeZone.Com

Dave has taught me how to add music to the postings. (Thanks to Dave for always giving me great ideas on making this a better blog) It is a great way to express feelings, get things out, take you back, or help make you smile. If it is a current post then it will just play, otherwise you can click on play to hear the music. This way you are not getting songs overlapping. If there is a video available I will also post it. Enjoy!

3 comments:

Boxing said...

Just want to stop by and wish you all the best. There is always hope, and sometimes hope comes in an unexpected way. I have a distant cousin who has MDA, one of the worst things ever could happen to a child......

mdmhvonpa said...

Sorry about you having a rough time and all. I've never considered SSDI but I find it peculiar about the bias they expected to be applied towards you. The system is truly broken.

ckays1967 said...

I am so sorry you are having a tough time!!

It sucks!

This is the first year I am missing the MS Walk...but my Mom is in town and I really wanted to spend time with her.

Secretly I didn't think I could handle the walk this year anyway.


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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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