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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It's Been A While

It's been a while since I have posted anything, just over a week in fact. There has been a lot going on with my family this week.

Last weekend my father ended up in the hospital. He is diabetic and developed an ulcer on his foot. It spread quick, and after some IV medication he had part of his toe removed Wednesday morning. He is doing great now. He is back at home and doing IV home health until May 7th. More than anything, I think he is just happy to be back at home.

Tuesday I had my follow-up appointment in Seattle with my neurologist. Usually my father would take me to these appointments, but seeing how he was in the hospital, my sister went with me. It was a very long day as we went over and back in one day (~3 1/2 hours each way). The appointment went well. It was long. I love my doctor, she did the typical exam and stuff. I have been in this relapse that has been lingering for a while now and so she increased my Topamax and added a couple new meds. One for memory and another for fatigue/depression. I am up to 20 meds now. That is frustrating, but I understand why it is necessary (not all are for MS, I have other medical problems, asthma, etc). Anyway, I go back to see her in one month for follow-up.

The rest of the week I have been focusing on helping my family with my father and dealing with insurance issues. Before I got sick I worked in the medical field and dealt with insurance companies quite regularly. With my dad going on IV home health for an extended period of time we wanted to make sure he was going to be covered. The last thing they needed was to get stuck with the bill.

Also, I got my social security approval this week. So, I am happy about that, but nervous at the same time. I am really happy because now I will have a better way to support my son since I have not been able to work in almost a year, but it makes me nervous about what this will do to my insurance coverage. So, I have been trying to figure out what kind of coverage I am eligible for. I have been told that once you are approved for SSDI, you are not eligible for Medicare for 2 years, but you may be eligible for Medicaid, but at the same time you may not be because the amount of SSDI you get may disqualify you, so that is the catch 22 of it all. There is a spenddown program where you have a deductible once every 6 months and then Medicaid kicks in, but the deductible can be anything from $5-$2000 or more every 6 months. I will find out more next week. I guess you just do what you have to. Something is better than nothing, and maybe I will be lucky enough to be closer to the $5 range than the $2000 range. I am unsure how they calculate it, but it all depends on your income. The way I look at it, is the Avonex alone is like $1500 a month, so it would not take long to meet that $2000 6-month deductible, so if Medicaid picks up everything else for the rest of the 6 months that would definitely help me out. And, as much as I HATE the idea of having to live off the government (that has been a very hard thing for me) because I have always worked, this is what these programs ARE for. It will be interesting to see how it all works out.

I find it interesting that stress is one of the WORST things you can have with this illness, but then you can't help but to have stress with this illness because it is so unpredictable, you must learn to change the way you live your life, and it can be done, but it is an adjustment (which is a stress factor) and limits our availability to resources that are necessary to live productive lives (without a serious fight, which creates more stress, like the need for health insurance). This is what it is like for those of us with an incurable illness, not just MS. This is why we need a cure.

Speaking of that. I got my MS Music Fest 2005 CD in the mail today. It was something put on by the Montel Williams MS Foundation last year. They are going to do another one this year. I will post a link for the dates when I know what they are. My only complaint. I listed Miss Jaime Hagarty on my contribution to the foundation and it came to Mr. Hello, pay attention. That is okay though, it is still for a good cause that will help many people, including me, even if they can't read. Maybe the person reading the email was having eye problems that day. I have blurred vision at times. :)

Well, I hope you are all doing well. Take care.

P.S. I just went on and was reading up on other bloggers. I saw that Camille is walking this year for the MS walk. If you are able, please go and support Camille. She is trying raise money and awareness for the National MS Society in her area. You can either click on the link to the right or click on the her walk site at https://www.nationalmssociety.org//njm/personal/default.asp?pa=51344179&pd=NJM0EWLK20060423SHO

6 comments:

mdmhvonpa said...

Sorry to hear about your dad's toe. You know, it must be a man thing about getting this kind of stuff taken care of. I HATE to see the doctor about stuff if I think it might just 'go away'.

Jaime said...

Thanks, it has been a difficult few months. My dad spent christmas in Arizona because my grandma had the same surgery and now he has had the same thing happen. It seems that when it rains it pours. The medical stuff just never seems to end in our family. Hopefully soon it will slow down. :)

personallog! said...

Hi Jaime, Just want to say I hope you are doing better and my thoughts are with you and your family. Oh....Happy Mothersday!
Take care
Dave

Jaime said...

Thanks Dave. We have been blessed, things could have been much worse than they were. I try really hard to have faith, even though I don't always understand why these things happen. I hope you are well.

amanda said...

oh Jaime I'm sorry about your Dad. I hope all works out for him.

As far as the Social Security and insurance goes it is definetly ridiculous. I was approved after fighting for almost 3 years a lil over 2 years ago. I get SSI because I was only 21 when dx'd and didn't have enuff work history for SSDI. I just hope that u get that you get it all straightened out.

Jaime said...

Amanda, I think I have somethings figured out with the insurance. I just talked to the state and I may qualify for a form of health insurance that would work, so I am looking into all of that. I will know more soon. :) 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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