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 COLD Outside!

I think winter has arrived. Officially winter is supposed to be as of November 21st, however I think it has arrived. The last few days it has been really cold out and today it has been raining. As much as I don't look forward to the cold weather I do love this time of year. It is the beginning of the holiday season, which is my favorite time of year. I love to decorate my house, sit in front of the fireplace with a nice hot cup of hot chocolate, and stay up late with Nathan during his winter break hanging out and just having fun. I can't think of anything that I don't love when it comes to the holidays. It is a time of year to look at what is important in our lives and I think we appreciate what we have more at this time of year. At least I know I do. Granted I do my best to be grateful for all I have and how I have been blessed all year long, but there is just something about the holidays.

Today has been a great day and something hit me today. I have always believed that everything happens for a reason, but becoming so involved in this fundraiser has really opened my eyes. I have always tried to be active with various organizations and since I was younger I tried to donate when I was able, and of course this is something that I wanted to do because I know first hand what MS does to a person but today it occurred to me that maybe the reason I have this illness is so that I can help other people who have it. Not necessarily through the fundraiser (although I know that helps as well) but because I have now met many people in this area with MS who have recently been diagnosed or gotten to a point with their MS that they are having to make some changes in their life and they seem to feel lost and overwhelmed.

I have had some great conversations with many of these people and their family members and I have been able to give them information that will hopefully help them. I have been blessed with the knowledge of how to deal with some of the more frustrating aspects of finding out you have an illness (getting the resources needed and dealing with the insurance side of things) because I worked in the medical field for many years and I dealt with insurance companies, at one point even working to get patients who were not technically eligible for coverage covered. Over the last week or so I have had a number of people tell me that they don't even know where to go or what to do. I realized that maybe what I need to do is use my experience to help these people see what their options are and hopefully make life a little less confusing.....maybe with the resources through the MSAA I can even set up a support group. I think that I would like to set up a support group for people who are newly diagnosed and then another one for anyone with MS.

I remember when I was first diagnosed it was recommended that I go to a support group. I went once and never went back. It was very uncomfortable and many of the people were much more progressive than I was. It was a reality that I did not want to see....people in wheelchair's, using canes. At the time of my diagnosis I was not ready to face that and I did not want to be around people who were more progressive because then I would have to face the idea that one day I might be in that same position. I just did not want to think about it. Now, I have accepted what comes from day to day and I try to go with it, but it was hard enough to wrap my head around being diagnosed let alone anything else. This is why I think it would be great to have a support group that is specifically for people who have just been diagnosed (or maybe diagnosed within the last couple of years). I would like to create a comfortable setting where people could come and not feel like they never want to return. Having support is very important with this illness and although many times our support system is family and friends (as it should be) it is equally important to have people who relate to the day to day struggles of this kind of illness. I think it is important to not get lost in the illness (and many people do at the beginning), it would be nice to get out the resources and information needed so that we can all live our lives to the fullest even with this illness. Anyway, I have left a message for Malcom and I am excited to see what comes from it.

So enough about that. The fundraiser is going well....we have collected somewhere around $1300 (I am not sure the exact number as my dad has the money box and CD's at his house). Nathan is doing much better both in school and he's over his cold, although I think that is in part because he gave it to me! :) Oh well....you know how it is, we get within a 5 mile radius of someone with the flu or a cold and we are sure to get it (okay....5 miles is exaggerated, but sometimes it feels that way). LOL I have been spending all of my time outside of the fundraiser drinking cough syrup, herbal tea, and relaxing in front of my fireplace and TV. Over all I am doing quite well though, which I am happy to report. It seems this Novantrone just might be the wonder drug after all (now I just hope the cold weather does not do me in....keeping my fingers crossed on this one).

Well, I apologize now for the length of this post as I know it is a long one. I hope all of you are doing well. Take care of yourselves and stay warm.....it's COLD outside.

8 comments:

Don said...

Those of you, who don’t know Jaime personally, can’t really know what a remarkable person she is, so I will give a quick summary of her history. At the age of 12 she was diagnosed with skin cancer, at 17 she had precancerous cells on her cervix which were removed. At 18 she fell in love with the wrong guy, dropped out of high school and became an unwed mother. He and his father beat her senseless and threatened to kill both her and her 2 month old son. As terrible as this was, I believe this was the point where she started to turn her life around. She was working in a medical office doing insurance billing, and eventually moved to Salt Lake City where she landed a job working in the pediatric kidney clinic at the University Of Utah School Of Medicine, where she also started taking classes. At age 24, she developed endometriosis and ovarian cancer. She then went through 1 ½ years of chemotherapy which not only did not work, but seriously damaged her liver. At 26 she had a complete hysterectomy and appendectomy followed a few months later by gall bladder removal. Things sort of calmed down for a while. She worked full time, went to school full time (sometimes carrying as many as 22 credit hours), raised her son and cared for her adult sister who is developmentally disabled. In 2004, she was diagnosed with MS. Her last few months of school were quite a struggle, but in May 2005 she graduated from college (with honors) with a degree in business, a degree in accounting and the equivalent of a degree in religious studies. While marching into the auditorium for the ceremony, she collapsed. The feeling in her legs returned in time, that with help, she was able to walk across the stage to receive her diplomas. In June 2005, she was diagnosed with lymphoma and underwent surgery to remove a growth in her neck. That August she moved to Richland so we could be more support to her. Since then, most of her problems have been MS related, including three major relapses. Getting involved with her blog; making contact with people from all over the country and the world; has brought energy and purpose that she has been lacking for the last year, back into her life. The “Everybody Falls” CD has been wonderful for her, and for me. It has given her the chance to try to help other people. It has given me the opportunity to sit beside my daughter for 4-5 hours, several days a week, watching her talk to so many people about MS. Many of them are newly diagnosed and don’t know where to turn. She empathizes and sympathizes with them. She provides them with information, names, phone numbers, web sites where they can look for help. She has provided a list of Doctors in the Seattle area who specialize in MS. She has even offered to coordinate appointments so they can carpool the 200 miles to Seattle for her monthly visits to her neurologist. She suffers after sitting out in the cold in front of the Wal-Mart store all afternoon, but by noon the next day she has recovered enough to do it again. She has been through so many things in her life, it would be easy for her to give up, but she has shown that she will not let this disease get the best of her. She is no longer a MS victim; she is now a MS advocate. She owes a lot of thanks to all of you who have responded so positively to her blog. By the way, Jaime got an email the other day informing her that a group of medical students at Yale University have been and will continue following her blog to learn about MS from a patient perspective. Since Jaime has links to all of your blogs, they are probably watching yours also. Keep supporting each other. Mdmhvonpa, Suzy and Linda D, thank you for the “Wows”

Jaime’s proud Dad

Zee said...

Jaime,
I love how you always look for the positive spin on things - particularly with your disease. As someone who's been newly diagnosed, it's heartening to see that. :) I'm sure the people you've talked to (and the ones you will talk to in the future) will appreciate your insight and guidance more than you'll ever know.
~Zee

Baitulos said...

Jaime,

Chestnuts roasting on an open fire...oh, I'm sorry! After reading the first part of your blog, I'm now stuck with THAT earworm in my brain!!! LOL

Glad to hear things are turning the corner for you now...keep up the holiday and MS spirit!

Linda D. in Seattle

Anonymous said...

Hey Jaime,

Your idea of a support group for people with a recent MS diagnosis is excellent. I had the same experience you did when I was first diagnosed -- so much to face at once, huh? Keep up the good work.

- sean

Sean Spence
MS Fighter & Founder, SharingOurDays
http://sharingourdays.blogspot.com
seanspence@earthlink.net

Jaime said...

Dad,
As always I could not get through any of this or do any of this without you. I am very fortunate to have the family that I have. I love you very much and I am proud to be your daughter.
Jaime

Jaime said...

Thanks Zee! I learned long ago that being optomistic is the best thing when facing an illness. Of course that is not always as easy to do as say...but I try. I do what I can and hope that it helps, that is all we can do. The funny thing about that is that is helps me at the same time. Go figure. I sure hope that you are doing well. Please take care of yourself. It is great to hear from you.

Jaime

Jaime said...

Sorry about that Linda. I hate when that happens to me (and no thanks to that lovely ditty on Mdmhvonpa's blog the other day/week I know just what you mean, LOL). :)

Jaime said...

Welcome Sean! I am sorry to hear you had a bad experience with support groups. I am hoping that I can create an atmosphere where people who have been diagnosed can come and not only feel comfortable (or as comfortable as you can seeing how they just found out they have MS) but also to know that they can get answers and help. I hope you are doing well. 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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