Hello everyone, I know I've been kind quiet as of late, just working through some emotional stuff. That and pushing, and fighting and pushing myself. Fell into a dark rabbit hole for a bit, had to climb out of it. Climbing out I am, and then some. I would like to take a moment and welcome all the newcomers, I sure hate your reason for being here, but im glad you found us.
I have something to share with everybody! Thursday, I found my legs were feeling a bit stronger and not nearly so unsteady. I started the day as usual with both crutches or my usual hand holds around the house (Full timer in my travel trailer). By noonish, I was on one crutch for most of the afternoon. Then I went to two and One, off and on. One crutch Friday and Saturday. Come today, one crutch to start the day and I spent 2 hours free as a bird!!! ... no crutch at all, till my legs have given out on me. My calves began cramping so now I'm nestled in my recliner. Getting up from time to stretch them out!!! I've been on 2 forearm crutches since the middle of August, so about 2 months. It's been 2 YEARS or so (possibly longer) since I have been able to go outside without assistance walking!!! Other than a short spell right after starting Ocrevus that only lasted a few days. In those few days I fell out of my house bouncing off my steps. (Luckily I didn't break my neck) so right back on my cane I went! Even then I could only be up for a very short while before sitting down. The 2 hours today were at my friends house going through some more of my stuff in storage, with maybe a half a dozen short breaks (30 seconds to a minute, at most) I haven't felt the muscles in my legs work and feel like this in so VERY VERY Long!!! Come to think of it, I was in PT last year using a semi recumbent elliptical trainer. If I had wings, I'm so happy I might soar right into the Sun! LoL... well, not on purpose anyway, in the myth of Icarus it wasn't intentional either! Something so simple at one time in life, as to walk across the street unaided, bringing me to tears. Even if only for this moment I can't even begin to describe the feelings I have right now. Well, in the weeks to come will tell the whole story. I am so very thankful for this blessing for I have much to do to prepare for FT winter living. I was getting so stresses for the help I was offered has been unavailable and I was becoming worried. Probably wasn't helping me climb out of the rabbit hole the stupid Mad Hatter tripped me up in!!! 🐰
Y'all are in my thoughts and prayers as always!
Allen
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Allen5280
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Thank you kdali , the best part is I didn't even feel uneasy as if I was going to fall. Not even so much as a stumble! Maybe I will be dancing before to awful long! 😄
🙌🏻🙌🏻🙌🏻 Because that has been what you’ve been working on. You’ve really been pushing your limits this year, and also having new pain. It’s all coming together and it’s wonderful to witness! Ty so much for sharing your journey, I know you will be dancing!
Im getting closer to my goal of a MS walk free of assistance. I got a glimpse today, I'll be paying for it in the coming days, it is worth it! Just the boost I need to keep striving, to fight another day. For as MS warriors, which we certainly are. My earlier comment made me think on a MS designation. With me bringing up the Mad Hatter tripping me into the rabbit hole. MS can also stand for Mad Sitter, for it completly ANGERS me when it forces me to my tushy! 😠 😂🤣😂🤣😂 if someone already thought of that, (more than likely) my sincerest appologies.
carolek572 thank you, most especially for your prayers (and blessings) for I couldn't do ANY of this without them! Y'all (as always) are in my thoughts and prayers also!
At last, I can see and feel a smile 😊 on your face. It is so heart warming to read that you have had a break, long may it continue. When is your next infusion of Ocrevus? I am so, so happy for you, thank the Lord, 🙏 🤗 🍫
Asmile that is genuine happiness smile, the goofy big teeth grin that make others scratch their heads! 😀😃😄😉😊 That's a wonderful feeling of, I actually am... going to get through this. My next infusion should be around the first week of December, provided some decisions that need to be made. I'm not certain of that just yet. I know that my last infusion wss not covered completly and it's a large sum. My providers rejected it stating it "wasn't medically necessary" it was the infusion centers responsibility to verify coverage. I got a notice from Medicare and Medicaid that Medicare was refusing partial payment and Medicaid complete denial. I ws s told by my infusion centers billing office it would be their responsibility if it was not covered. They are required by law to verify Medicaid approval for if someone has fallen to that as their secondary coverage it's because they have exhausted all their own resources in the process. It's called the extra help for Medicare. If it's no longer being covered, my question is why. I believe it may be due to me not having a Disease Course DX yet. That's on the agenda for my next visit to my specialist in November I also have an up-and-coming MRI early November. I'm so thrilled (yes sarcasm) about my MRI. However, it needs to be done, lots and lots of questions for my Neuro this time around. Ok, come to think on it that is every time! 😂
How can they refuse to give treatment that’s already started? Surely the doc approved it in the first place. The insurance companies have too much power over peoples lives. Again I am happy for you and I can hear delightful music being played on that harmonica all the way over here in the U.K. keep smiling 😊 🙏 🍫
I'm not sure how it is they are justifying denying people medications. They are always looking for a way out of payments. The copays and deductables for the retired and disabled are ridiculous. If a fortune 500 company had the same managers as our health care, they would have been fired long ago! It's tough getting through all the red tape. I don't know where the issue lies or what my doctor will say about it. His office has had to go to bat for me many times pushing through medications, So we will see.
Allen,Brother, YAY! Welco.e back!😃 So, glad you came out of the M.adSitter!! Keep us updated! that is awesome news!👍🙏💗Prayers are helping, as we're always Prayin for eachother!!--Jazzy💜🌹
It is a great way to end/begin a week!! I'm a bit sore today but thats to be expected. I got around a little quicker today cause I have to address laundry I've been putting off for the last 5 days or so. Yes I still had clean unwear, no turning them inside out for me! However I have a Dr appointment this afternoon with my primary care physician. Just the annual meet and greet and catch up with what all is going on, nothing special. Still have to be there though. Still one crutching it so it's all good!
Thank you greaterexp , I'm thrilled as well, especially with the dreaded day after not being bad at all! I'm not pushing to hard today but life still has its demands.
Allen5280 How fine it is to hear your voice again around the breakfast table! You are an inspiration to many of us, especially me this morning. I hope your spirits continue to soar, your legs gain in strength, and your promised help appears to secure the place for the howling winds of winter. Be well, be strong!
I know you have been having a difficult time lately goatgal. Glad you haven't changed to goatbot yet. 🙂 it's not an easy road at times. Hope and pray everything becoming easier. When I ended up on two crutches life became really challenging. Finding simpler ways of doing things, some thing finding a way to do them peroids. Getting my laundry to the park clubhouse just to do my laundry. Several failed attempts finally led me to using my big luggage and putting the handle over my forearm crutch handle behind my hands and pulling it along like a cart solved that. Trial and error finally found a way. Trying to find affordable, healthier, decent meals for the microwave was another. Premade salads became a staple of life!! Then there was the fresh veggies and salad spoiling cause I had trouble making it to the store more often but trying new things to keep fresh longer etc. It's a whole new set of challenges and we are pulling ffor you!
Allen5280 I repeat what I said: you inspire me. I too fly solo, learning by trial and error, what works, what doesn't, finding out that pull is easier than push and style matters less than accomplishing something that at first seemed impossible. I now truly know how essential to my life bipedalism has been...which only increases my determination to get back on two legs no matter what compromises I make to do so. Every post you write has displayed your courage, determination, and pragmatism...in addition to your appreciation for sunrises, sunsets, the open skies and your faith. Well done, my friend.
Amen!! Sometimes the fight drags me down, I get stressed when things seem to be falling apart. I try to push on cause I know there's a brighter spot just around the corner. I get a little lost when those down times drag on.
You will continue to be in my thoughts and prayers!
I have to claim the victories, otherwise I would be overwhelmed in the times of defeat. God Bless you as well and you are in my thoughts and prayers. I know I'm forgetful, but I think remember seeing you post some, I don't remember welcoming you. Welcome, hate that ANYONE has a need for this forum, glad your here.
Glad to bein a better mood, I hate crying myself to sleep. Just wanting it to all end, when I know better. I had the help of someone who messaged me and help me get through till things began to change. I can't thank them enough.
That is so awesome! I do know a little about how great it feels to do something you hadn't been able to do. I have only had the 1st 2 doeses of Ocrevus & the other day I had to walk up a set of stairs that have deep steps & hard to climb. I went right up those stairs like I never have before. I was suprised myself. I pray that your recovery only gets better and lasts!
hairbrain4 , I am so happy to hear that your showing improvements as well! I will also be praying yours does as well! I goes a long way, having accomplishments to help boost ones resolve in keeping it going! I will be praying for your continued improvement. Mine has been slow with quite a few set backs but the peaks get a little higher every time around. It's not always easy, sometimes downright frustrating, with every new improvement makes one want to fight a little harder! 😁
I've got an 8mm of about 9mm area of my medulla, where my brainstem and spinal chord meet that has been completly and irreversibly damaged. Thanx MS! Every moment I get is already that. Every time I put my feet on the floor, every time force air through my harmonica I get a miracle. It's been somewhere in September of 2014 when I first saw my MS specialist, and even when I coukdn't hold a conversation with him. When I couldn't hardly walk more than a few feet without checking the existence of gravity, he looked at me nd said "Allen, were not quite sure how your walking or talking nearly as well as you are". So, even on my bad days, I sometimes am overwhelmed and forget how blessed I really am.
Allen it is great to see you back and sounds like you are back to positive mode again? Great to hear you are able to get up and do a few things 👍🙏. Sorry to hear about insurance BS 🤬. Just gripes my ass when they tell you one thing and then it totally changes 😖. I have been requesting mine in writing before I start anything anymore, paper 📝 paper 📝 that’s the way it is 🤯. My prayers are with you and hope things get worked out 🙏👍. I am trying to find funding to get my pet scan done for Cancer ♋️ follow up, it’s hard. I did have some money put away but my sons alternator, battery, and ignition switch went out on his car 🚙 so needless to say dad and mom helped. Just don’t tell him it was my pet scan money!! I am not worried about it, something will happen and worrying does me no good mentally or physically. Hope you continue to improve 🙏👍. 🐾😉 Ken 👻🎃
So it would seem I've started the uphill climb once again. I was just talking to my primary care physician about the stupid insurance stuff (💩)! It's a complete nightmare on top of a nightmare!!! I hope and pray you can acquire the funding. I have had several instances where I wa s able to receive grants to help with MS therapy costs in the past. Have you happened to talk to the entity whom is to perform the tests to see if they are aware of any possible grants for assistance?
Your absolutely right about the worrying, it only makes one feel worse all around. It's hard not to sometimes when it seems as though everything is crashing down around you. Stress, worrying, anxiety all flare my symptoms like crazy. At first it didn't make sense to me as to how that could be.... but then the proverbial 💡 came on! It really is ALL IN MY HEAD! Lmao... lesions, cognitive decline, atrophy and the rest of the MS MESS. So I guess it could make sense 😂 so now I'm just tryin' to keep calm, and chive on! LOL I saw a saying like that on a t-shirt.
Allen, yes I have been applying for funding and it is similar to MS that a lot of funding is gone quickly and have to wait till it comes up again. I was lucky early this year and did get funding for my Aubagio 👍. I am waiting on two places are supposed to call me by tomorrow 🙏. Wish you well 👍🐾. Ken
So happy for you Allen5280 That has to be the best feeling in the world to be free, at least for a little while! Keep up the good work and don't overdo it
bxrmom , oops, to late, I did it again! Or I should say overdid it. Sometimes the demands of life don't quit. I think I might need the DVR for life so I can pause time for a little bit! 😁 I just don't know when to quit, it wwas enough that I did laundry and had a Dr appointment .... but noooooo..... I had to go to the video store AND the grocery store too... I was o one crutch all day though cause my legs are tight and a bit sore. It will be all good though, the big surprise is that I'm not wiped out, I am tired but not the usual while out tired. Sore muscles are not always bad, it's the cramps that suck!! Had a little of that last evening but doing ok today with that so far. Thank you Jessie
Woohoo! What wonderful news to start off the week, Allen, you've made my day! I haven't been on here nearly as much lately as well due to a (non-MS) medical set-back, but am feeling better on all fronts now and it really seems that the Ocrevus is working some magic. I think you and I are on a similar timetable - I started in late June 2017 and my third full dose is scheduled for 1/10. My neurologist told me that it could take up to two years to really show good or full effect, and this seems to be accurate in my case - my walking and general movement have gotten so much better in just the past month that I have to pinch myself to believe it's real. I'm really excited to learn that you're having similar improvement at this stage. Pace yourself, stay positive, and keep us posted - your joy is infectious!
Its so good to hear from you dianekjs , my heart sinks a bit to hear of your setback. Although it's great news to hear of overall improvement! Hooray! I believe we are on a close timetable. I started in May of 2017. I shoukd be around December if all works out. I won't be upset if it gets moved back till after th first of the year. I missed all the holidays last year. I will at least get Thanksgiving in this year. Although my last infusion only put me down for a few days instead of the first few putting me down for 4 to 6 weeks. My doctor added Modanifil to my medications and it helped this last round. I was only really whipped out for a few days following. That really made me happy! 😁 I'm having trouble with the pacing myself already, lol, surprise ... surprise ... surprise ... I cant help it, im so afraid its only going to be a short while, you know how nuts this stupid affliction can be!!! Come tomorrow morning, I will probably be giving myself the third degree for doing so! Sometimes I've just got to pay the piper! 🙄
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I did it again
Back from a nightmare. Has anyone gotten Covid within a week of getting booster?
Fun in the unexpected
POST #2 I WAS HAVING A BETTER DAY UNTIL I FELL:(
