Do you ever feel like you just simply, one day, retire from life and shut donw, and crawl back in your tiny cave to escape reality, and the having to expend enery to keep going when you are already out of gas in the tank of your mind and body? If you haven;t, you haven't lived with MS long enough! My journey of seeeing 18 doctors in 18 months, with each one giving me another diagnosis, another label, another prescription or worse, send me to another specialist has come to an abrupt hall. Something popped (I think it was the fighter in me, the find-the-research-and find a clue me, the writer of drama and comedy, or compassion and experiences) in my head, and I think I popped right out of my head and went somewhere else. Probably to that new black hole the scientists found that has the energy of 800 million suns, thinking maybe it would let me have just one of those suns to give me back my passion, my purpose, my love of life, and ready-to-try-anything attitude! But, as usual, with my most unfortunate, mostly struggling, comorbidities (don't you just love that word?!) list that keeps growing with each visit to a new doctor. But, as for our treatments, who are we to question the mighty doctors who offer a solution with a new prescription? Aug. 1 I quit 15 of my 19 medications; many new doctors since then, I am back up to 10. Ever read the book "Two steps forward, one step backwards?" It is very inspirational, but thanks to the docs I am going 2 steps forward and 3 steps backward! so, begonning 1/1/18, I am elimination 3/4 of my doctors I have been sent to visit. My latest label, comorbidity, is that my MS has progressed to dementia. so I will write when I am "lucid." Another interesting word. Comorbidities. Lucid. "Can you take care of your personal needs?" - I am so tired of being asked that question, YES, I CAN CLEAN UP AFTER A BM MYSELF AND CAN WASH MY HAIR ONE WEEK! i DO NOT NEED TO BE PUT AWAY IN THAT BLACK HOLE! I refuse to go in a nursing home. I saw how each of my parents were treated, (about like me in the mental ward for week), and I will die first. So, dementia, gastritist, eophaygalitis, chronic myositis myalgia, hip bursitis, polymyalgia rheumatic (my cormorbidity list is longer than my grandkids Christmas list!) (have I been naughty -or are these new dianogsis just to see if I will "curse God an die?" Thankfully, I have a more Godly man of faith than Job had for a wife!, And I believe in the scriptures, that repeatedly remind us that "through suffering Christ was made perfect" that He might be our perfect sacrifice (Hallelujah for Christmas!) So, I suffer on, like a good girl would, so I will please my Father. Can't wait to meet my MS forum family in Heaven someday! Maybe we could keep our orange bracelets to identify each other! jimeka and all our group! Another appointment today! But come 1/1/18 my insurance changes and I am going to no doctors unless my bronchitis and asthma are almost at pneumonia stage, I mean, why not, my newest neurologist said there was no more treatments available for me for my MS, "so go manage your pain and your emotional disturbances somewhere else"!! Yep, feeling like Job here, but "man that is born of a woman is of few days, and full of trouble;" always been that way, always be that way until there is a NEW Earth and a NEW Heaven. Then I will be blessed a hundred fold, for "I'm on my way to Heaven, Hallelujah! This world is fading from my view; Oh, yes, I've made my vows to Jesus, my Redeemer, to Him, I'll evermore be true. I am called and faithful, sanctified with Jesus; I'll be among those that are made NEW." (That's the chorus of a song I wrote one time when I was "dwelling in Heavenly places with Jesus - I can do that when my thoughts and my soul are 100% given to Him). Am I will continue to laugh at whatever comes out of my mouth, like the other day, I said to my husband, "If you will wash the bathroom rugs, I will mow the yard." He said, WHAT? Of course, what I meant was if he would was the rugs, I would wash the floor. (my one chore of the day). We laughed a long time over that one. It's even better that "I love Lucy!" every day around here. (And, I almost forgot, a ghost has invaded our house and hides everything - our keys, our phones, my purse, my doctor's cards, my coffee - amazing what that stinker hides so quickly!) And I am so happy I was able to put up our tree one more year (even if I did play and pay! Next time I will post a picture of it! Brings so much cheer, almost as much as all the posts I read here. In case, I don't make it back by then, Merry Christmas to all and a peaceful New Year, with strength and joy to keep going and going, (like the pink bunny), keep swimming and swimming (as Dorie told Nemo), and let it (whatever the problem) GO as Miss Frozen said! "Let go and let God have His wonderful way," a chorus we sing at church.
Coming back to life again: Do you ever... - My MSAA Community
Coming back to life again
agapepilgrim its so good to read your post, you never fail to make me giggle. I don't know if you meant too, but I had a good giggle with you mowing the kitchen floor. I am sorry that you have been told that you have come to the end of the road as regards doctors and treatment. I was told right away on diagnosis that there was nothing they could do, so I have never taken any medication. Anyway enjoy the freedom of no side affects, maybe your gastritis is due to so many pills. Until next time, you are forever planted in my memory, many blessings Jimeka 🌈 🦋 🤗 💐 🎄
jimeka
I really enjoyed this post and was a blessing to read it 🙏 Sorry to hear that no more meds to try 🤕 Maybe it’s best, only the Lord knows 🤷🏼♂️ Thru prayer and laughter we go on👍 Merry Christmas 🎄🎁 to you also 😉🙏❤️ Ken
@Kenu Thank you. Your profile pic is beautiful. I so miss my little Mandi, but the Lord will carry me on, laughing and dancing in my soul. Merry Christmas to you, also.
jimeka
Sending you prayers of strength and healing. Our Lord has a plan for each of us. He is the almighty healer. It’s nice to think 🤔 of us all meeting up together in Heaven. There is no rush to get there, but will enjoy meeting you all there😊🙏 I’m sure you don’t want to think of another med, but I will suggest you research Naltrexone. I started it in October and now have more focus and energy than I’ve had since I went numb 18 months ago. I am fortunate to not really feel pain, you can buy CBD drops online. A friend of mine uses them and has been able to get away from taking Vicodin and Zanex. The THC has been removed so you don’t get high. There are some options out there. PM if you’d like. Never give up, your MS family is here for you 😊🙏💕 Lynn
CalfeeChick
@CalfeeChick if I click on the name the comment screen closes. Silly pc. Anyway, my daughter took me to an established reputable oil and I paid a pretty pinny for high quality strong CBD oil. Sadly to say, it was money wasted. Like so many medicines, it didn't phase me, no difference. Doctors keep trying different muscle relaxants trying to find one that doesn't make me pass out like Flexeril, but the weak ones don't stop the muscle spasms like Flexeril did. It worked wonders for about 10 years. And I have a different PTSD med, but its making me a zombie like all the others. Just want to stay in bed all day. There is no pain if I stay in bed, but what a wasted life. Too young to give up!!! Don't get on here as much as I used to. I think its the Lexapro. just no interest in anything, and I was always a passionate person - jump in head first! But I am learning humility - I can't always do what I want to do, but "I can do all things through Christ who strengthens me", if it is what He wants me to do. Difficult lesson to learn for this stubborn, do or die, dare-me-to, old woman. Merry Christmas! Next year gotta be better, right?
hang on kiddo it's a rough ride. I still believe we'll get our heads above the waves one day
Happy Belated Birthday agapepilgrim 💕 🎄 You can mow my bathroom anytime!😄
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