I haven't sat down to write a blog in a while. Have been dealing with a flare and steroid hell. Hoping the worst is behind me. Trying to think of the positive way to get this information out. Unfortunately, I have been unable to build the kind of rapport with my new physician who replaced the old. I'm not a very big complainer so when I voiced my concerns to my previous physician, he immediately acted without me going through hoops. So let's just say, it's time for a change. For me as a healthcare professional (I am a nurse), this is very difficult. I am usually very understanding about rules, time frames etc. that health professionals deal with on an every day basis. What I don't tolerate is not listening or reviewing patients histories and acting appropriately. As much as it us a pain to obtain copies of records, MRI disks, make the change even if it's hard. You must be able to feel confident in your caretaker. If you switch and don't bond again, change until you find the right fit.
On a positive note, the nurses who did my transfusions gave me some great advice. As my significant other (ex husband) is getting towards retirement age and could possibly be offered a buy out package, they suggested I use my 100 percent durable medical coverage now and order an electric scooter as I will probably be needing it sooner than later. Never would of thought to do that. I do use scooter for traveling but have always rented one. I'm heading to Bermuda in two weeks and found out that it is cheaper to just buy one outright than it would be to rent it for a week. I'm driving to the ship so I'll just throw it in trunk and will be all set.
So thinking ahead, it may be many years before you need permanent wheels but if you have benefits and you pay for them use them while you can.
I will be working with the website administrator soon to possibly have a link developed to donate supplies for other patients, or to do swaps or sell equipment patients are not using. I know I have a wheelchair, shower stool and cooling clothing I can donate to start us out. Any feed back on this will help us decide on it's worth.
Enjoy your summer fellow patients stay cool.
A BIT ABOUT SUSAN...Susan is a registered nurse who worked in high risk obstetrics at Brigham and Women's for twenty years. She is also a certified nurse paralegal. She is currently not practicing as she is disabled because of MS. She was diagnosed 9 years ago with RRMS and has a daughter who also has MS.
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