So I realized that there are quite a few people who follow my blog and whom I follow that have MG or some sort of autoimmune or muscular disorder. I wanted to take this chance before my surgery next month to give you all a chance to ask me anything about my symptoms, feelings, thoughts, or experiences with Myasthenia Gravis. It can be about the past, present or the future and I will answer it. I will keep your name anonymous if you wish it and you can send me an email or simply reply to blog with a question. I feel that sometimes this is the best way to help one another out in the community as well as just relate to one another.
I have had a bit of a set back with my MG lately but only to have it go bumbling along again at its usual humdrum do as it wants pace. I feel i am rather in control of my MG; however, at times it likes to have a say sometimes and boy can it get mouthy.
Yesterday, i had to get a temporary catheter for treatments untul i get my subcutaneous souble vortex top of the line limo of ports next week. It wont be ready to use for about two weeks due to hiw tender it will be. But in the meantime i needed treatment a tad early due to some good and bad stress. So iff i go to get the temp and oh what a journey.
I told them i mus. be at work at noon on the same day. They said okay its a temp so its possible. Then i get there and they start and say we will use local anaesthesia…code for lidocaine injections ONLY…i did not realize this. What the heck was all the hubub about needing a driver. I could have driven myself after. I though i would have been given a mild sedative or something stronger than that but nope. No anaesthesia. They said i did better than some patients with anaesthesia and i just stared at him blankly with tears free flowing and shaking like a Chihuahua.
They kept asking if i was cold and i was like no…i was scared, you triggered my anginiphobia and im probably in shock.
But to know that i will have the new port and start the process for my thymectomy soon fills me with a nervous excitment.
As promised here is part 2 of my struggles. I can’t say they are always struggles as I have learned so much about myself but I still find them to be fears or frustrations so I struggle with the issues. One of these issues would be nightmares…I have increasingly more nightmares or unwanted dreams in the last year. I mean this may I have no idea how normal this is for most people but I usually do not have nightmares or bad dreams and I have had a TON of what I consider bad dreams lately. Though I know their source I have no idea what they mean. I truly do not like the uncertainty and the people by which I am dreaming concern me a great deal. Moreover, the stupid loop dreams are killin me. I think I am awake and then they sort of loop and start over and it’s almost like inception mixed with my whack job warping that gives me just enough leverage to know it’s a dream but I can’t wake up UGH. Usually nothing scary just annoying as all get out, LOL.
When did people become so surly, rude, AND/OR impassioned that it was okay not to have a conversation or debate with intellect, facts, and the occasional well thought out opinion with some supportive evidence. I mean we all enjoy talking about current events ranging from politics (well maybe not so much, lol) to the Olympics, but I have almost not even desired to open my mouth as people’s sensitivities appear to get hurt when I open my mouth. It’s extremely frustrating because I usually learn within the conversation or debate the person I am taking to has not even educated themselves on the person they are speaking about.Many times they have their own opinion of them already (good or bad) and the image is stuck and possibly quite superficial. They refuse to take in any new information about the person regardless if the person committed 10 crimes though formerly they were a Saint (not saying this was the case). Now I believe it is okay to be passionate about your conversation, cause, or topic it shows you care and have something more deeply rooted behind why you like the person/ cause/ topic; however, refusing to hear another person’s point and saying I don’t care what you say about this person, I won’t believe they are this or that or STAY of their case without hearing that person’s cause is rough…This last week dealing with several different issues I got SHUT DOWN just like that and it was quite rude and annoying. I mean from the it went to issues regarding personal matters, to things at work, to topics about the Olympics and all by different people and the funny part was I wasn’t even the one bringing up the topic some of the time, LMBO. I was just shocked at how it all seems to happen more and more in the world but how it all happened to me so much in one week. Man I definitely can say everyone I was dealing with needs a vacation ASAP before I start becoming a hermit.
Recently not having time to myself anymore for anything. I mean I knew picking up a part-time job would suck some of my free-time away but it also took so much energy I just cannot even function when I do have days off and that was after cutting the hours back on the part-time job. My husband said he understood but I sadly do not think he fully gets how it feels when you are both Type A and need to get things straight and finished because you cannot trust others to do it (okay well him mainly) and when you want to relax but the time you put aside for it you are so fatigued that you cannot even enjoy it. Like being tired and relaxing are NOT the same thing. Like some days I just want to enjoy cooking a great meal, doing an art project, going for a swim or workout, playing a game, or talking to friends on the phone! But then I get home and I am so tired that my Myasthenia Gravis says Nope and I am slurring and I have to choose between taking meds and not slurring enough to eat or talking to them on the phone and maybe eating 2 bites and being hungry all night because I won’t really be able to eat it without choking and I will have horrible indigestion and heart burn and mucus build up (since I can’t drink water to thin it out- remember I can’t swallow and this means choking and literally drowning). Then people say text and I can only do that so long before my fingers give out too because I have a job where I must type. At home I can use my dragon speech system but at work I have not used it trying to be as ‘normal’ as possible. So I try to upload snap chats of me and posts giving quick updates so they know I am ‘alive’ and the countdown to treatment so that they know when I can finally be semi-normal again. I feel so bad though because I feel like a horrible friend. I want to do so much more with them. And I truly miss them all! It makes me feel pretty lonely sometimes and I find myself wanting to cry but since that will cause worsening symptoms I don’t but I tear up often and they just fall. I know this is something that some people will just not understand.