Dealing With M.S...Is Like Dealing With A Real Chupacabra....

 Dear Fishes-

       It's two days after the fourth of July and my body is feeling it. Just going to activities tires me out the next few days and during the activity. That's what M.S. is like. You constantly have to be reserving your energy because it takes a lot out of you because of dealing with brain fog (where your mind has a hard time thinking), loss of energy, eye sight issues, and many other fun filled exciting times that you have to get used to while having M.S.. To top it all off, I have Common Variable Immunodeficiency Disorder and then that makes me get weird infections that most people never get and I am like a petri dish collecting all of the illnesses like pokemon cards. It gets old, really. It's all the time. 

       If you didn't know this, M.S. is completely different for every single person. It's not like the flu, where you can expect the illness to follow a timeline. It's like having a real Chupacabra that does what it wants, when it wants on your life. It literally drains your body from having energy. The funny thing is that M.S. isn't seen easily, like chupacabras (lol). You have to have an MRI to spot the lesions in your brain and spinal cord to see how the disease progression is happening. When an "active" lesion is happening, it lights up on the MRI and the gadolinium dye that MRI techs put into your arm, through IV shows the activity of the M.S. and what it's doing. When I get MRI's, I have to get MRI's with and without gadolinium dye so that the doctors can do a comparison. While chupacabras are highly suspect, M.S. is quite real and devastating. 

      When M.S. lesions are active, it's called an exacerbation (aka flareup). Exacerbations are weird because you can go blind, have muscle weakness, have loss of motor skills, and lose all sorts of abilities that one might take for granted in a usual body without M.S.. The things that M.S. does is destroy connections from point A to point B with the myelin sheath of nerves. Imagine if a cord from a TV to an electrical outlet had a pair of scissors that wore down the plastic coating of the cord, the information from the TV to the outlet would get lost in transmission and not work because of losing the coating of the cord. The same can be said for M.S.. The myelin sheath of your nerves wears down and gets destroyed from M.S. making it harder or ineffectual to communicate between nerves--essentially causing all sorts of body problems and disabilities.

      Some people with M.S. might present with gait issues (walking problems) while others may present with muscle spasms, neuropathy, neuralgia that can't be seen. There are tons of problems that M.S. does to a body and my left hand is having problems at the moment (possibly due to the M.S.), so I don't want to go into detail about it because my hand is hurting from writing. 

      I will say this though, I've had people write me notes on my car that say "You're not disabled" or scream at me for parking in a handicapped parking spot. To this I say, "You have no idea what you're saying/doing and you're not a neurologist and also that they are a bastard for judging me." You have no idea what I go through on a daily basis with M.S.. I once even had this lady at CSUB that got an entire group of individuals on the second floor of the Dorothy Donohue building at CSUB and she publicly tried to humiliate me because I wasn't "disabled enough" by her standards for having M.S.. The humiliation is on her though because she was so ignorant along with her daughter that "checked" me with a bunch of books and tried to knock me over. I'm not sure what she told her students but I could have sued the college over that. I didn't, but I could have. People like that are just ignoramuses and they don't deserve my time. I remember flipping them off and walking onto class. Was it one of my finer moments? No, but I felt justified in the moment with this crazy lady and the mob that she got on the second story of one of CSUB's buildings--which was also a fire hazard. 

      I do grow wearisome with individuals that leave notes on other people's cars, unless they're trying to tell you that they accidentally hit your car and are leaving their insurance information. All other notes on peoples' cars are just insidious in nature, usually. I once went to the gym, per my neurologist's recommendation and while there, I had someone write a note stating some very nasty things. I posted the note on facebook and told my group of friends that some douche bag wrote it and left it on my car. Apparently, I wasn't disabled enough looking for that individual--must be nice judging people on a daily basis. I also once had a professor at CSUB (Oh, Bako) that was my summer photo class and blog writing class that verbally accosted me outside of a frozen yogurt place that I frequented and he told me that I wasn't disabled. Another time I could and should have sued the school for idiocy, but it's Bako, so there's that...

      I was once parked in a handicap place with my legal placard, in Huntington Beach, at a church conference for Mid Single Adults when some "gringo white guy" rolled up and started yelling at me that I wasn't disabled by his standards and then continued berating and vituperating me. I did tell the guy off even though my friend was trying to be a peacemaker and not cause a scene. Later that night, the same guy left about $50 worth of Baskin Robins ice cream vouchers under my windshield wiper and apologized on one of the vouchers. That's rare--apologies, that is. I just wished more people were cognizant of what M.S. and other invisible illnesses do. I push myself a lot and try to accomplish a lot within a short period of time because I don't know how much longer I have till further disability sets in from the M.S.. That's the constant worry. 

      I can remember this other time when some "rando" walked up to me as I went into Costco at Bako and the lady told me I shouldn't have parked in the handicapped parking place. I told her that I did have a legal placard and went back to the car and put it up so that she could see it. It was really weird, but it's Bako, so I expect that. I remember being with my older brother one time in the car and we were parked in the handicapped parking area and he told me that I should limp or something because I wasn't looking disabled enough. Once again, ignorance is rampant. Little did he know of what I physically have to deal with on a daily basis with my body. It's just best not to judge in any case. I'm supposed to use a cane, per my neurologist's admonition, but I don't, they get in the way, usually. I used to use one and it was constantly wearisome dealing with questions from people. 

     The list is too long of people that have done douchery to me while having M.S.--it's monotonous at best. Maybe I have to deal with it to help show where douchery isn't helpful when one is dealing with an awful chronic autoimmune disease all the time. I hope my dealings with two autoimmune diseases aren't for naught because that would seem pointless. I hope some good can come about speaking about these things more openly. Just be kind to people, period. 

See ya in the sea anemone, 

B.