A bit frustrated.

[Silverclaw]

I was diagnosed in 2013, it took them almost a year of all kinds of testing to figure out why I kept passing out at work. I graduated from Johnson & Wales in 94 with a degree in Culinary Arts. I spent the better part of 18 years working in many different aspects of the culinary industry and finally running a small corporate kitchen attached to UMASS Medical School (This being ironic as it was the neurological center at UMASS that finally diagnosed me.) When I was diagnosed, they actually told me due to the heat and stress of the environment of a professional kitchen I could no longer work in the kitchens as it created an environment that was dangerous not only for myself but others working around me. So I actually lived up to the old adage of "If you can't take the heat get out of the Kitchen." They told me sign up for disability. I ended up working at Lowes of all places started as a stock boy, then when I couldn't keep up with pace doing that, then they switched me to just inventory control. I used to be able to stand and work for over 15 hours at a shot, in some cases 24+ hour shifts. By this point I could barely stay on my feet for 3 hours. After about 2 years of steady decline it ended up that I kept having attacks at work. It finally happened that I ended up fully paralyzed one day while at work. I finally had to admit that I couldn't do it anymore. It was several more months before Disability finally kicked in. That was a few months ago. This summer was so hot, that I was forced to spend the whole thing in the basement hiding from the heat. I don't know want to do with myself, and I want to be doing something productive. A friend of mine said he could teach me some tricks to make some money through his business online, but after some research found that if I made too much money, I would lose my disability, and therefore my health insurance....

[jimeka]

Hi you have certainly been through the mill. One of my biggest fears is waking up paralysed, ms has a lot to answer for. Heat is a big problem with quite a few on here, I too have spent a lot of the summer inside and I used to be such a sun worshipper. It mentions Bells Palsy on the bottom, I had one of those just before my daughter got married. My face has nearly recovered, but I have been left with my left eye brow dropped alittle, I guess another thing we can give ms the credit for. Anyway keep smiling, they may find a cure one day that nobody should have to pay for . Take care

[SepFromWisco]

I also spent most of the summer indoors but now Fall is here and its cooler so I tell myself to get out at least 15 min a day in the sun! Really helps with Vit-D levels.

[REDLIPS44]

I also have spent my summer inside with the AC I do still work 40 hours I have a great Boss and they work with me for whatever I need. I am lucky in that way.

[Bygonelines]

Welcome Silverclaw! I am fast approaching the time when I will be unable to work anymore. I am working on ways to bring in a little extra money to supplement what I make with Disability. I want to be prepared. Do you have a hobby that you enjoy doing? Is this something you could teach to others? Maybe you could still do cooking but as an instructor for 1 or 2 students in your home? You could bring in a little money, have something to do, and still not overwork yourself. Maybe have a 1 or 2 hour class one day a week? You could also do volunteer work.Maybe work with teenagers in the foster care system and teach them to cook. You could easily do this sitting down and have fans going as well as your ac to keep your body temperature down. Maybe use your knowledge and skills to stafrt a "How to cook" blog for kids heading to college, newly weds, and others that don't know how to cook. If the typing is aroblem for that you could get a program like "Dragon, Naturally Speaking" So you could speak you blog and it will type it for you.

There are many things you can do to keep busy and make a little money on the side. The students in your home would be good because that would be money under the table. If you start a part-time business you can deduct all of your business expenses from your earnings and for the first couple of years probably not come close to the $1,000 + (can't remember exactly how much) per month they allow you to make.

Good luck and let us know what you come up with. I am always looking for new ways to make money.

[Fancy1959]

Silverclaw, it's Fancy1959 and I would like to welcome you to this wonderful chat room. Most people that Ms attacks if they admit it or not become very frustrated at some point during their diagnosis for the early part of their disease. Ms presents its' own reality and leaves us no choice but to gradually accept it. The Wonder of this chat room Silverclaw is that you'll get perspectives from a lot of different people, many of them are dealing with the exact same frustrations and issues you are. Portage dress, a condition many of us with Ms suffer from, there are cooling vest out there. Oftentimes like in the spring of the year, they are offered free as a promo from different pharmaceutical or medical supply companies. You literally put the best into a freezer and freeze it in compartmented little ice bags. Then they all sit together and Walla you have a vest that will keep the heat from overwhelming you for a good hour or two if you wish to go outside to do an activity.

Watch actual income being made but that doesn't mean you cannot continue to be productive. This chat room has been a godsend for me. I've gotten very involved in it over the last four to six weeks and it helps to fill some of the gaps I have during the day. There are many other volunteer activities that you can assist with as well. Just look for them in your neighborhood or community. I play a lot of games during the day to help keep my mind Sharp I read books and material on MS and do physical therapy just about every week. PT is a great gift if you can work it out with your insurance. It will really help you.

I wish to invite you to become our newest famous warrior. We need to remember that together we are strong. As MS Warriors we never give up and we never give in. We simply fight on MS Warrior, fight on!

[PatMAZ]

I had a male friend w/MS who had a catering business. We met at a support group. He said that the humid summers were his worst time and he would actually go in the upright freezers and just stand in there when he had to, to cool down. I've actually done this myself, as I sometimes do volunteer work in food pantries.

I know what you mean about the $$$ problem, I'm gong through that myself now. It's really hard. Take care.