Saturday, July 27, 2013

This is a section from a book (soon to be published) I have written called "It's Not as Bad as it Sounds (my life with MS and Fibro)"

(Yvonne Decelis, Columnist, MS News Channel)
I hope you enjoy this section (and I will definitely put an update in my column when the book comes out.) HERE'S CHAPTER ONE:

The things I’m grateful forNow I want to take some time to discuss some of the “perks” that I have discovered since being diagnosed (first with Multiple Sclerosis and then with Fibromyalgia.) I know that may be a somewhat irritating sentence to read, but good things have come out of this and I would be remiss if I didn’t mention any of them.

I want to start by writing about an online support group for people who have MS that I have found to be incredibly helpful. It is called “Stan’s Angels”. The URL for the group is http://www.stansangels.com/.   The person who started it is Stan Swartz and I was fortunate enough to join when he was putting the support group together so he and I have become good friends. If I had not discovered his web page, I honestly do not think I would have come out of the diagnosis with the healthy attitude and/or outlook I have now.


Stan started the group when he was working with Dr. Timothy Vollmer. Dr. Vollmer is a friend of Stan’s and was formerly the head of Neurology at Barrow Neurological Institute. He has since been promoted to another position.

I have made some very strong friendships on Stan’s page. I have also received wonderful and helpful advice and, best of all, it is a great place to go and vent to others who I know understand where I am coming from. One of the not-so-great things about MS and Fibro is that, by being “invisible disabilities”, these conditions lead to a lot of trouble with making the rest of the world see that we have problems
.

I am constantly hearing about people who have friends, family members, partners, etc. who do not understand that they are sick and therefore don’t understand why they can’t do things a “normal person” could do. They cannot see that something is wrong with us and therefore assume that we are fine (and that we are being unreasonable, uncaring or lazy, etc.)

This leads to a lot of problems for us and it was really wonderful to find a web page where I knew people would understand exactly what I was talking about. At the same time, this is a support group that I didn’t find to be overwhelmingly negative and/or depressing. One thing you will hear a lot if you have MS is that stress (and/or negativity) should be avoided. We know how impossible that advice is to follow and it would certainly help us out a lot if we didn’t have to constantly defend ourselves to the rest of the world. We are not lazy, stupid, uncaring (or any of the other incredibly hurtful things people call us) and we should not have to prove ourselves to anyone.

We (the Angels) watch out for each other and support each other as much as we possibly can.  I have seen Angels turn to each other for advice on a wide spectrum of things. One thing that comes up often is that we give each other online support when someone is having an attack, when someone is in a situation where they aren’t being treated fairly, or giving each other advice on things like how to collect disability. In addition, even though this is an online support group some of the Angels have met up with each other in real life (and a few actually got married!) I believe I heard Montel Williams once state that you cannot really “get MS” unless you actually get the condition. He was right (to a point.)

Another item I want to bring up is collecting Disability benefits (SSDI) from Social Security. (I believe you can do this for MS or for Fibromyalgia.) Applying for and getting Disability is not an easy task at all. Saying it is very time consuming is an understatement. If you try to apply for disability directly through your Social Security office, do not be shocked if and when you get rejected. I believe everyone is rejected initially (which I believe is understandable considering our government probably does not want (nor can they afford) to give money to everyone and anyone who comes looking for it.)

My advice is that you should not try to do this alone. Also, do not try to act and/or look healthier than you are. A lot of us make that mistake. It took me almost three years to get approved for SSDI and, had I not tried so hard to make myself seem completely “normal”, I probably would have gotten it a lot sooner. In addition, I used a Disability Law Group (after getting three rejections.) The upside of working with the law group was that they eventually won the case for me and only charged a percentage of the back pay I received from SS. The downside was that it took an extremely long time to get approved and that I really could have used that extra money (from the back pay – i.e., the amount of money I would have collected from SSDI during the time from when I applied to when I was accepted.) If you don’t win, they don’t charge anything.

Since I did this I have learned that, depending on income eligibility (and local rules and regulations), going through my local Federal Congress people would have probably been faster and would have saved me the 25% that I would up paying the law group who won my disability case.

Collecting Disability allowed me to quit two part time jobs I was somewhat unhappy doing and also gave me the ability to go back to school full time. I often hear people telling me that getting laid off was “the best thing that ever happened” to them. (NOT something you want and/or need to hear after getting laid off.)

It took a long time (from 2006 to almost 2012) but I am finally able to say it (to myself!) I honestly don’t think I would have been able to get my Bachelors’ degree (as well as get certificates and then go to Graduate school) if it hadn’t been for me losing my full time job and eventually getting SSDI.

Do I plan to stay on Disability forever? I am hoping the answer to that will be “no” but it is impossible to know what is going to happen with a disease like Multiple Sclerosis. I am not a fan of Fibromyalgia (which causes me pain, “Fibro fog”, and fatigue) but I don’t believe it is anywhere near as degenerative a condition as MS can be. I could be wrong about that however (remember – I’m a patient.)

The next item I want to discuss is exercise and “healthful” living. It took me a very long time to get over finding out I had MS and the first few years after the diagnosis did not go very well for me. During this time, I got out of one relationship and into another and I also had bad luck with the first medication I was given. In 1999, however, Montel Williams was diagnosed and he donated money to a hospital I use (Brigham and Womens) so that they could open up their own MS clinic.

I did quite a bit of research on what was going on with Montel and discovered that he used exercise to help promote his well-being. I was already exercising and trying to be healthy but, until finding out about how well it worked for him, I had no idea what a huge difference exercise would make for me. I quit smoking (not easy at all), quit drinking diet soda (even harder than quitting smoking, much to my surprise), and started eating less junk food and more vegetables and fruits. As for the exercise; it was not easy to get into in the beginning.

I am very fortunate that athleticism runs in my family. Even though I was never athletic as a child, I became quite athletic as a result of my workout routine. I am still as active as I can be. I also am in a study being conducted at Tufts Medical School on the effects of Tai Chi on people who have Fibromyalgia. This is a six-month study and I am currently halfway through it. I can honestly say that Tai Chi has helped me out quite a bit (as has my instructor, Ramel Rones.)

I would like to include some information about Ramel’s training here since he has videos and books you can buy at Amazon. He also has a class you can take online at Udemy. If you go to Ramel’s home page the best available discount for the class is available there:

www.ramelrones.com

You do not have to be an athlete to take this course – it is intended for beginners so please do not be afraid to give it a try if you are curious about it.

Another item I am very happy about is having the opportunity to be a “Commonwealth Diversity Fellowship” participant. This was a pilot program launched by the college I attended in 2010 (I was in the “first batch” of participants for the program.) This involved doing a Fellowship for a State agency. I would up getting my Fellowship in the Department of Veteran Services. This confused me a little bit initially because I was a Gerontology major which led me to think I would be put in the office for Elder Affairs. I was initially very confused and worried about this placement decision.

Since the semester I was assigned to this Fellowship, I have stayed on. Not only did I figure out why I was put into this department, I found that I had very strong feelings about the type of work I was being asked to do (involving helping Veterans find employment and/or volunteer opportunities) and that I had a lot of empathy for the Veterans that work(ed) with this office.

In addition to learning a lot about Veterans, I learned much about Post Traumatic Stress as well as about conflicts in other countries (along with the people that have gone overseas to fight for our safety.)