I had lost total control over my hands and fingers. Couldn’t hold a fork. I couldn’t walk very far without stumbling forward as if I was drunk but not. My right eye was malfunctioning called ptosis where I could not control opening and closing my eye especially in the sun. Couldn’t brush my teeth or hair, or take care of my grandma and mom and my two boys as I have been doing. I couldn’t turn the keys to turn the car on, I couldn’t swallow food well or chew it, my kids said I always looked mad but I wasn’t feeling that way it was my facial muscles going nuts. The scariest part, other than useless hands and fingers was the scary breathing problem. My throat would close up and I could barely get air. It happened during extreme physical movement and terribly high anxiety times.
All of a sudden the caregiver needed her own caregiver!
Felt drained, similar to low iron feeling but deeper. Went to neurologist and got a blood test done, came back positive for Myasthenia Gravis. They prescribed me Mestinon (generic, under $2 for a month’s supply), 1/2 a tab (30 mg) every six hours.
With the help of this tiny chalky pill, I’m nearly normal looking now. I no longer wear my wrist braces, I can walk without feeling exhausted after ten steps, I can do everything now, my eye works normal, I just get tired and sometimes, overheated. At those times, I lay down in bed with my fan and freeze myself, sleep a bit and get up after an hour or so feeling nearly normal again. Thank goodness this medication does not interfere with my depression, anxiety and ADD meds.
But I found that if I smoked a cigarette (Marlboro Special Blend), it made me dizzy and sick. I was smoking up to 6 cigarettes a day. I quit cold turkey yesterday and found I only missed the actions of going outside and looking at the roses, listening to the birds, feeling the sun or wind, etc. I did not miss the taste of the cigarettes. I did not miss inhaling the smoke that would make my eyes water.
So Day 2 is here and I have no interest in going outside and having a cigarette, there is a slight pull to follow my old routine of smoking but I stomp on it.. No one is telling me I have to stop smoking but myself. I do not want to feel sick AND it is a good example for my two boys.
Am I eating more? Not really. I can type again now and I have had troubles with my cell phone carrier so they turned my service off so now my phone is a glorified ipod. I play spider solitaire, read via kindle app and other games that grab my attention. I’m not biting my nails and I can’t crunch on ice as it breaks my already fragile teeth. But I’m surviving.
Having my hands back, my eye back in my control, my body back in my control is amazing! I am waiting for a scheduled MRI of my brain and a CAT scan with and without contrast for my chest. It seems we have this thing inside of us located at the top of our lungs, connected between them and we use it during childhood and by puberty, it begins to atrophy. But it plays an important role in Myasthenia Gravis. Sometimes there is a tumor on the thymus gland and much like Alien(s)chestbuster, they cut ya open and remove the thing.
How do we go through our lives, I am 41, and never know about this thing inside? I can’t call it an organ. It’s so weird.
So yay for a diagnosis, yay for a medication that is affordable and WORKS! and yay for day 2 of no more smoking! Sometimes there are days where I am very tired, and it is a disease that cannot be seen. Like MS too. People don’t understand that I had to use the handicap parking (only when there were more than 15 spots like at Target) when I couldn’t walk anymore.
So even if you can’t see something, it surely doesn’t mean that something is not there! Pay attention to your body, research using the internet (but don’t go all hypochondriac!) before seeing a doctor. I told my neurologist what I thought I had and he told me I was absolutely right! How many times do you hear a doctor say that?
My son is in the hospital for depression. It’s been hard but his father drove me to see him on Saturday and Sunday. His 72 hour hold is over and he will be discharged on Wednesday. It was one of the most hardest things I have ever done. To bring my son to crisis where he was taken back behind many locked doors by these very big men. Then they moved him by ambulance, totally strapped down from neck to feet more than an hour away.
Other than missing his handheld gaming system, food at home, and some other regular day comforts, he is doing quite well. I just pray that this is helping him as his life is just beginning and I need him to thrive while he survives.
On another note, our neighbors had a party last night and they turned their sound system all the way up. God says to forgive your neighbors but I found it hard because I already had a migraine and they do not care what time it is or how loud they are or to be courteous to thy neighbors. I called the police the last time they did this and they threw eggs on our cars. But on that occurrence their sound system was maxed out and on both times, the chairs we sat in vibrated from their pounding, swearing music.
My mom’s multiple sclerosis has not improved rather it is weakening her further. She couldn’t get pills down her throat without gagging so she’s wearing a cervical collar and it helps like magic! I am a caregiver to both my mom and grandma who;s leg was amputated in April of this year. I am a mom of two boys I love dearly and guardian of four cats that do not always get along and I am constantly cleaning up their messes as one overeats and up it comes while another overeats and makes a mess in both ways which can get pretty stinky, poor maine coon kitty. So furry. While our cat that overeats got bitten by another one of its siblings, I took him to the vet a week ago and he’s 21 pounds. He is doing much better now.
My happiest note is that I took my book I wrote for 2014 NaNoWriMo.org and I ordered the proof paperback and published it on Amazon! I want it available as free so I’m going to have to figure it out as it would not let me do that. The lowest I could go was $0.99 and I am all about free books!
I will gladly send a copy to anyone who would be willing to write a review for me. This book was written in thirty days and edited in fifteen days by myself. It is just the beginning as I have one more complete novel that is my jewel that I am editing right now.
We have super foggy nights and mornings and I hope that people drive safely! It didn’t rain but the cars drive by making that swooshing sound from the wet pavement.
I am going to give a paperback copy away in goodreads once I finish the proof.
Just finished watching Les Miserables, 2012. It was beautiful on stage and emotionally moving on film. It comes second to Phantom of the Opera, the film. I enjoyed the many stage productions but Gerard Butler’s performance holds so much emotion, in his eyes, his stance, he is the perfect ‘Erik/Phantom’. Especially since he does not wear that darn pinky ring I’ve seen others wear. Too pompous for me. Mr. Butler’s ‘Erik’ is haunting and this movie’s soundtrack especially ‘Point of No Return’, is my haven from the pain of this world. If the clouds cover the sky and hide the sun, I have this music to be lost in. Should my life prove to be harder than I could believe it could be, I have this music. In music you can close your eyes, and lose yourself in it. It lifts my depression, strengthens my soul and brings a smile upon my lips. Listening to this particular song, as Mr. Butler sings at first, tender then at that one point the tenderness is gone and the need, want, obsession with ‘Christine’ is emotionally warped but in a good way. I’m always humming parts of this soundtrack, and my younger son will say, “Phantom of the Opera again momma?” and my response, “Of course my love! His voice haunts me. It is beautiful.” and he replies to me, “You sing that a lot” and me “yes I do.” We exchange smiles and life continues.
If my life is meant to be a mother, daughter and granddaughter, ex-wife and whatever other label anyone wants to put upon me, is there nothing else? I know love, have felt its strength, if I cannot have someone love me (family not included), be alone with my soul for the rest of my days, soon I will be turning 40, and with one son who is 15 and the other turning 10 soon, what will I do to fill those years when they no longer need me? Online dating is not an option as everyone lies. People ask me now and then, am I dating. Are you kidding me? My first thoughts, ‘who would want me?’ and then blocking those thoughts out, ‘no time right now.’ I have fought to live, and this is the life I am living. the path I chose to follow. Death will come one day for me but not at my own hands and not over something as complicated as the love of a man. I don’t need another person in my life telling me what to do, how to do it and all that. I know, not all marriages are like that, some are fabulous and wonderful but those are shapeless dreams floating away on errant clouds. Clearing my soul. There is no escape from life but to go on. And any thoughts otherwise is time best spent doing other things. key word there was DOING. Which means live. Don’t take the so called easy route out of life, don’t choose suicide. I’ve been on both sides of that coin and I am here today to keep you on the same side of the coin I chose. Life, for me, for you. Colleen
free books from amazon. free at time of this post.
And I’ve got a great list of free ebooks from Amazon I compile myself and they are books I have chosen to read. Please note there are several books on this list without reviews. I posted the ones without reviews (HELP A FELLOW AUTHOR OUT WITH A REVIEW ON AMAZON) directly to Facebook earlier today.
I’m a crazy ‘Harry Potter’ fan and my youngest son and I are watching the second movie, ‘Chamber of Secrets’ and I always have fun watching something with him. He received his Kingdom Hearts Sora figure today and the first thing he did was accidentally break the key blade. This figure cost over fifty bucks so I put the broken pieces in a bag to save for later even though I spent more than thirty minutes trying to get the tiny pieces back together. As soon as the movie is over, I’m on to editing my first book, “Altered Futures, Guardian Warriors, The LightMate Series Book One”. Yeah that title has got to be shortened!
Ramble: Why can one phone call totally change the tone of the day not just for one person but a household of five? I rather wish it was someone trying to sell me plastic baggies than the Dr. calling about something wrong with someone.
One important note, book 1, “Kevin and the Seven Lions” is available from Amazon today for free so make sure you get over there and check it out! Here is the URL: