Check out the changes to my site. I have added a Medicare tab which gives, hopefully, a clear, in-depth explanation of Medicare benefits complete with charts explaining the differences between different plans and types of benefits.

This information is the same for anyone with Medicare due to a disability as well as seniors on Medicare.

I have also made changes to the News tab, adding some staple MS sites as well as helpful places to look for solutions to everyday problems.

If anybody is reading, and you have some suggestions on how I can make changes, feel free to drop me a line. In fact, if you have any words of advice or just need to chat I promise to respond.

I've been sitting on my butt for three years now, literally and figuratively, and it's time to end the mourning period. By this I mean I really need to go back to work. I'm tearing my hair out doing nothing day after day. I guess I'm technically not doing "nothing;" but, I am feeling a burning need to be productive, to create something or contribute to the betterment of something. For those of you still working, wishing every day was Friday or Saturday, be very, very careful what you wish for. The boredom can be mind numbing. I mean, I love my dog like nothing else in this world, and I have no complaints spending all my time with him, but let's call a spade a spade here. He's a dog. He contributes very little to my intellectual growth and stimulation. I gave him a copy of Sartre's Being and Nothingness over a month ago and I know he hasn't read it yet. When I was vacuuming the other day I found it half chewed up and stuffed under his dog bed. I thought about and then quickly rejected seeing if my dad would read it, but I seriously would have better luck with the dog.

So I decided it was time to get up off the mat. New York has a wonderful organization that helps people with disabilities procure gainful employment. It's called VESID (Vocational and Educational Services for Individuals with Disabilities). Actually, each state has one:

Alabama
Alaska
Arizona
Arkansas
California
Colorado
Connecticut
Delaware
Florida
Georgia
Hawaii
Idaho
Illinois
Indiana
Iowa
Kansas
Kentucky
Louisiana
Maine
Maryland
Massachusetts
Michigan
Minnesota
Mississippi
Missouri
Montana
Nebraska
Nevada
New Hampshire
New Jersey
New Mexico
New York
North Carolina
North Dakota
Ohio
Oklahoma
Oregon
Pennsylvania
Rhode Island
South Carolina
South Dakota
Tennessee
Texas
Utah
Vermont
Virginia
Washington
West Virginia
Wisconsin
Wyoming

There's nothing worse than feeling useless. If you've been unemployed for a while, at least try to go back to work. I promise you, doing something, (even if it's not what you were doing before or pays only marginally), is infinitely better than sitting around feeling useless. If you are still working, these websites may still be useful to you. The Americans with Disabilities Act is pretty specific when it comes to policies in the workplace for persons with disabilities. If you are struggling because of your disability, you might want to check out your state’s advocacy programs.

I've also started looking into work from home jobs. I'm lucky in that my qualifications are geared towards teaching. There are tons of online tutoring jobs out there. There are also resources that help you start up your own tutoring service. I'm sure there are a lot more websites than just this one, but give this a try to start: Work at Home Careers

You can also go to craigslist or a similar website and offer your services. When I was living in North Carolina I got several tutoring jobs thanks to craigslist.

If all else fails, volunteer. The National MS Society is always looking for volunteers willing to help in any way. You can be a peer counselor, help out in the office, or just work at specific events like the MS Walk. If you have a specific skill set, they may be able to put you to good use. This way you won't get rusty. If MS isn't your thing, there are tons of places you can go to look for volunteer work. Here's a good place to start looking : Volunteer Match

The bottom line is you've got two choices: 1) Stay at home lamenting your lot in life. This can be advantageous if what you want is to have no friends, lose all your skills, gain a bunch of weight, and be unspeakably bored for the rest of your life. If your goals are not that lofty give some serious consideration to making the best of the bad situation. Who knows? You might find something new that is infinitely more fulfilling than what you were doing before.

So I started physical and occupational therapy this week. What a wonderful experience! I was initially turned off to the idea of going because it felt a little futile; trying to improve my body while it is in the process of deteriorating seems like a waste of time. I think that was the wrong mindset, though. Much like every other mindset I've had regarding my illness, the first one is usually the wrong one. Every step of the way I've had to fight my natural inclination to give up when things get too difficult. It's really the wrong disease for me. I'm one of those people who never finishes what she starts, my intentions are always good in the beginning but ultimately my projects wind up being too ambitious for my motivational level. I have tons of unfinished manuscripts, (playing it fast and loose with the word "manuscript." Really they are just one or two pages of fluff), craft projects, diaries, intentions. I should have gotten something that requires a lot less grunt work, like Von Hippel-Lindau or male pattern baldness.

At any rate, I decided against being a defeatist and figured, why not, it's not like I have a busy schedule to clear. The MS Center I go to in New York has a comprehensive physical and occupational therapy department that works solely with MS patients. The areas they work on are expressly geared toward improving spasticity, strength and endurance. It was such a nice feeling to go somewhere and have them immediately understand what I needed and how to go about making it happen. I was even able to have a workout when I was there! Didn't actually break a sweat, but I did sets and reps and all sorts of exercises. If any of you with MS have had negative experiences with physical therapy or have had little luck getting the desired results, I suggest you try to find a place that works with multiple sclerosis specifically. I think you will be very pleasantly surprised.

Equally important is occupational therapy, which addresses things like adaptive equipment, home modifications and alternate approaches to everyday tasks. There are so many wonderful tools out there these days to help people with disabilities function better in their day-to-day lives that a lot of people just don't know about. The occupational therapist walks you through every area of your life such as grooming and dressing, eating, transportation, cleaning, etc. and teaches you about how to work with your limitation as opposed to fighting it. There are so many things that are difficult that you just don't think about, or think that there's really no way around them. These days, there is a tool for everything.

To wit:

Eating: It is impossible for me to scoop up small food out of a bowl, like corn or peas. The damn things always wind up clinging to the side of the bowl in a desperate attempt to avoid being eaten. I can only get like two peas on my fork at a time, prolonging the agony of the survivalist pea and elevating my blood pressure dangerously. They actually make a bowl that has a lip around the rim that you can scoop food into then transfer to your utensil.

Dressing: My legs are diametrically opposed to going inside my pant leg. No matter what position I am able to contort my body into my legs steadfastly refuse to be sheathed in fabric. They make tools for expanding your pants legs and tools for lifting your leg off the ground. (What they really need to make is a tool that can reason with and/or subjugate errant limbs, like a hammer or bludgeon of some kind.)

Bathing : Not only do I have a frozen shoulder, I have a right arm unwilling to reach up to the top of my head making it next to impossible to shampoo my hair. I normally have to dump half a bottle of shampoo on my head and massage it in a little at a time hoping that the sheer volume of product on my hair will be enough to cleanse it. They actually have a long reaching tool that has these nubby things on the end that rub the shampoo in for you.

Transferring: Talk about precarious. Every time I have to get up from my recliner and transfer to my wheelchair or vice versa, I stand up and have to very quickly pivot while holding onto whatever is available and blindly hope my rear end finds its target. Occasionally it misses and I find myself bouncing off the edge of the chair and trampolining onto the ground. They have these cool round discs you put on the floor that you can stand on that swivel you around so you can transfer without worrying about rug burn or certain death.

I never would've guessed that any of these things were available to me if I hadn't done a little internet research and spoken with my occupational therapist. They even have a technology occupational therapist that helps you with all your computer equipment, cell phones, headsets and various technological sundries that I am wont to own. Try getting headphones on with just one arm. Sounds tricky, doesn't it?

So for all you folks who have given up hope that there are solutions to your everyday problems, it would behoove you to look into answers rather than resigning yourself to the difficulties they present. The answers are out there, you just have to know where to look and be willing to put in some effort.

Sorry I've been away so long. I've probably lost what little readership I had. I've been having a sort of crisis of faith about my progress, or lack thereof. It seems like in spite of my efforts I continue to do poorly. Every morning I wake up and think, "today I am going to feel better." Invariably this is not the case. But then I remember one character flaw I've never been able to correct, my impatience. I've always done things fast and expected fast results. A lot of times this works my benefit, in school and work and with things like household chores and being somewhere on time. However, there are some glaring disadvantages such as heartburn, worry and high blood pressure. The former comes from, as my friends and family annoyingly put it, "inhaling" food. I probably hear on a daily basis, "wow you really ate that fast," or, "did you even taste that?" And, my personal favorite, the ever pithy, “Gee, you're like a vacuum cleaner." Original. Although I usually mumble something akin to unintelligible agreement, like a grunt or a half smile, what I really want to say is, "Can you blame me? Between the lackluster conversation and the irritating noises you make when you chew your food, I'm just trying to finish up so I can get the hell out of here."

The latter two problems with fast processing speed, worry and high blood pressure, are due to the fact that I expect an effect almost before I submit a cause. “What do you mean the cookies aren't done? I just put them in the oven like five minutes ago.” “I've been on this damn diet for three days now and I haven't lost an ounce." If I take medicine for a cough or sore throat and it hasn't kicked in in the first 10 minutes, I obviously have some incurable form of throat cancer. Internet shopping is excruciating. It's almost not worth the convenience of shopping in my bedroom when I have to wait 7 to 10 days to get what I ordered. I don't think I've ever been able to make it to the end of a book without knowing how it's going to end. I flip to the last page before I've gotten a quarter of the way through the book. Patience is not my strong suit. Let me tell you, multiple sclerosis is not a disease that lends itself well to being impatient. The fact that it takes me more than 20 minutes to get dressed in the morning when it used to take me less than five is something that causes me a healthy amount of frustration. If I head off to bed around midnight I can safely expect to be tucked in around 12:30. Between transferring from my chair to my bed, situating myself comfortably, getting the blankets arranged and a host of other niggling annoyances by the time I close my eyes I'm more awake than I was when I decided to go to bed. If I have somewhere to be at a specific time I need to give myself a good one and a half to two hours head start. I spend most of my day getting ready for the day. By the time I'm ready to get started, the day is over.

All of this is tangential to my point, what was that again? Oh yeah, that I am expecting to do cartwheels after having given my new plan of action just a few weeks to take effect. Sure I have started going to bed earlier (tonight notwithstanding), I'm taking better care of myself, I'm on a new treatment regimen and I am working towards new solutions to current symptoms. But I've only been doing this for a few weeks. I haven't even started physical therapy yet. I've only had one treatment of methotrexate. Yet I am expecting instantaneous miracles. I just need to calm down and realize that nothing that is truly enduring in this world was ever effected overnight. There is no insta-cure, and if there were, it would probably be temporal and half-baked. The key to all this is going to be perseverance. I am probably going to have just as many bad days as I am good, if not more. It's going to be very difficult not to get discouraged. I often feel like I am trying to stop a bullet wound from bleeding with a band-aid (misplaced modifier?), or like I'm trying to stop a dam from bursting by plugging the hole with my finger. I don't think those thoughts are ever going to completely go away. That's fine. As long as I keep them in check and not let them run amok through my brain, I'll be okay. I would rather be Pollyanna than some whiny slob no one wants to be around.

So I guess I am over my pity party, as fun as it was time to move on. I hope I will be away this long again.