MS Awareness WeekA busy week this week full of protests and International Women’s Day and politicians that seem to not know what it means to be a compassionate human being. If only we could ban them from swimming in the gene pool. This week is also MS Awareness Week.

I used to post about it annually but I haven’t for the last few years, mainly because Bookman continues to do so well. Some of you may know that Bookman was diagnosed with Multiple Sclerosis in 2005. MS is a chronic disease with no cure. The body’s immune system attacks the protective myelin around nerves in the brain and spine. This causes short circuits that can lead to all sorts of problems from vision to mobility and, well pretty much anything since the nervous system is one of the body’s main communication systems.

Bookman continues to do really well. He struggles with fatigue and several other symptoms but he remains strong and completely mobile. The introduction of oral disease modifying medication a few years ago was a small miracle. The scars Bookman had from daily injections have faded, though they have not disappeared. Not having to do injections anymore is one reason Bookman finally decided to start having work done on a new tattoo. It is an extensive one on his left arm — tree bark — and will eventually cover wrist to upper arm.

Bookman’s in progress tattoo

Even though he is doing well, Bookman’s hearing is gradually being affected by his MS. He noticed some hearing loss a couple years ago and was tested and confirmed. It wasn’t bad enough to warrant any action. Recently he noticed he was having a harder time hearing people and saying, what? a lot. So he saw his audiologist for another test. His hearing loss has advanced enough that the doctor wrote a prescription for hearing aids. Unfortunately, hearing aids are not covered by health insurance. They will cost $4,000-$6,000. The state has a grant program to help pay part of the cost. Bookman is in the process of applying, so cross your fingers!

As those of you who live in the United States know, the Republicans in Congress are out to decimate the Affordable Care Act. Their new proposal for replacing the ACA is a pile of poo. Bookman is lucky to have an employer that offers a good healthcare plan, but lots of people with MS are not so lucky. That oral medication he’s on? It costs over $1,000 for a one month supply. Even with Bookman’s good insurance he would be paying an annual deductible of several hundred dollars plus a monthly co-pay of close to $100 if not for co-pay assistance offered by the very drug company that sets the exorbitant cost of the medication. It’s a travesty. But this is only one of the medications Bookman takes. He also has several others to help alleviate the symptoms caused by MS. Thankfully, these are not as costly but he still has to pay co-pays on them which adds up over the course of a year.

Now some might say that since Bookman has insurance coverage through work he doesn’t have to worry about what Congress does to the ACA. Wrong. If the new plan gets approved, should for some reason he have a lapse in insurance, a new plan can deny him the important coverage he needs as well as charge him a whole lot of money for whatever coverage they are willing to provide. There is also no way to predict what employers might do to coverage they make available to employees. And, should Bookman ever need to work less and his employer decides to not provide health coverage because of it, well, let’s just say if I let my imagination go the results are anxiety-producing.

It is also my understanding that the new plan removes out of pocket expense caps as well as raises the amount insurance companies can charge older people and people with greater healthcare needs. But even if it didn’t affect Bookman at all, there are still a whole bunch of other people out there who have it worse and will have it even more worse if the new law passes.

McSweeney’s had a funny/not funny list in February that kind of sums it all up: Patreon Perks for When I Lose My Insurance due to MS.

If you are hazy about what MS is, visit the MS Society, and/or watch this nifty informational video

One thing MS has taught me and Bookman and reminds us about every day is to appreciate what we have and the things we can do — seeing and hearing, walking and biking, cooking and gardening, because, as Jane Kenyon says, one day it will be otherwise