My disabilities are weighing me down lik... - My MSAA Community

My MSAA Community
4,675 members β€’ 9,682 posts

My disabilities are weighing me down like a ton of rocks! Fancy1959

Everyone's it's Fancy1959. It has been a while since I have posted anything on the site and I wanted to let you know that I'm having a hard time in general and just can't bring myself to post much when there's not a lot of good news. I've been on ocrevus for 4 weeks today. My spasticity comes and goes now but is does not plagues me each and every day like it used. So that's a very positive aspect. But over the summer my disabilities continue to grow weighing heavily upon me. My left hand is often very hard to uncurl and to have much function with it. My feet are rolling under like club feet and I have been put on special Arch inserts to help stop the clubfoot from developing into a worse condition. To top this off my right knee is still very sore but it's hanging in there. There's still swelling in the knee and it often aches quite a bit. Now on to my right shoulder. On November 13th I am tentatively schedule for a reverse shoulder replacement. It is so bad a standard replacement cannot be done on it. I tried to get it done sooner but there wasn't any availability and things had to be pre approved Etc. I wanted to be a little more human for Thanksgiving but I don't think that's going to happen. The pain in it has been increasing steadily and it is a constant throbbing to sharp pain in it at this point. And I still have almost a month until we go in to fix it. Yuck. I really don't want major shoulder surgery but I'm tired of the constant pain and limited use of the shoulder. I just thought I needed to let everyone know I haven't abandoned you on purpose but I'm just feeling kind of bad and disabilities are getting to a point where it's getting difficult to deal with them. I wish everyone good health and please take care. I hope to get to a place where I can post and talk to you more often. I'm the one that now needs to remember that together we are stronger. Please remember it for me!

33 Replies
oldest β€’ newest

Hi Fancy1959 ! I am so sorry to hear all that you are currently going through. I will keep you in my prayers for strength, relief, positivity, etc.! Hope that we hear from you soon!

4 likes
Reply

Continue to take care of yourself, Fancy1959 , and don't fret about not posting on My MSAA Community! Just know that we are all thinking of you here, and we look forward to whenever you can share your thoughts and updates with everyone.

Holding hope for a good Thanksgiving for you,

- John, MSAA

5 likes
Reply

good to hear from you Fancy1959

glad the spasticity seems a little better. Certainly wish the feet, knees and shoulder improve. Please keep us updated as you are able. Sending hugs xoxo

6 likes
Reply

Hi Fancy1959 - We're thinking of you here at MSAA - please focus on yourself first and know that we are always hear to answer any questions you may have! -Kaitlyn, MSAA

5 likes
Reply

You are greatly missed my friend πŸ’•

Please take care of yourself and give a call when you can! Fancy1959

~Hugs n Luvs~

J πŸŒ πŸ‘»

4 likes
Reply

I will pray things get better. Please hang on and I will remember the "motto".

4 likes
Reply

Fancy1959 good to hear from you. Sorry 😐 it's not all good news, hope the Ocrevus works for you. Big hug, blessings Jimeka πŸ¦‹ 🌈 πŸ€— πŸ’ 🍫

4 likes
Reply

Fancy, I am so sorry you are going through a bad down time! I will remember you daily just as I remember daily that together we are stronger. πŸ˜€β€οΈπŸ˜†πŸ’œ

5 likes
Reply

Fancy1959

I want you to stay strong you can do this you are a STRONG PERSON I don’t know what your going through I say this because people usually say I know what you are going through but I don’t

Just keep your goal for Thanksgiving you will be cooking something I say this because you know that that bird is going to be too heavy.

Think positive and be strong.

πŸ˜ƒπŸ€—πŸ™πŸΌπŸ™πŸΌπŸ™πŸΌ

3 likes
Reply

It sounds like you have pernicious anaemia. Take b12 injections everyday, folic acid tablets andIron Ferrous Fumarate 210mg. See how that helps

5 likes
Reply

Fancy1959 I am thinking of you and pray that your surgery is a complete success! Hope things are looking up for you real soon!!!

3 likes
Reply

Sorry you are dealing with a lot of issues. Will keep you in prayer for healing and your doctors for their wisdom and skill.

Peace

Bonnie

4 likes
Reply

Oh, how very stressful, and stress does not help! I certain add my voice to the others in wishing you the best and hope things get better SOON!!!

3 likes
Reply

Fancy1959 you are missed, we wish you well and will look forward to hearing from you when you are able.

3 likes
Reply

It's Fancy1959 and I wanted to thank each and everyone of you for sending so much love and positive support my way. The prayers and kind words mean so so very much to me. I have to remember that this is a wonderful family and I can only benefit from getting back in and posting and replying to post in it. Thanks for showing me the light again! Each and everyone of you glows like a beacon of love and support. I am so very lucky to be part of this family! I will do my best to talk to you more. Fancy

4 likes
Reply

Bless your heart!

We are here anytime you need us good or not so good!

Prayers for the doctors to find you some relief!

3 likes
Reply

Hello Fancy1959. Reading your post sounded like I was reading about myself. I am 64 years old and was diagnosed in 1992, but now realize I actually started with symptoms in 1990. I also am needing a total shoulder replacement. For years I rejected the use of a power chair thinking that using a manual chair I was at least getting a little exercise and burning some calories. Not one health care provider told me I would eventually wear out a shoulder or two. It is my right shoulder also, that has been effected, as well as my right knee. My original symptoms consisted of hyper extending my right knee when walking.

I am now looking into Ocrevus, since it is the only and first medication for Primary Progressive MS. I have been on Avonex and Copaxone, but that's only because my original doctor who diagnosed me years ago felt that everyone with MS should be on some type of medical treatment. I still continue today to take Copaxone. I was told by my present doctor that Ocrevus has not been tested on anyone older than 55, so she didn't recommend it, but it was ultimately up to me.

I am so glad I wandered upon your post and will be waiting to hear how your surgery goes. Good luck and God speed with recovery!

Best Regards,

Cindy

4 likes
Reply

Fancy1959 😊

1 like
Reply

Crwatkis714

I read your note that you left for Fanc1959 I am

Ssdw1958

I wanted you to be I just had my second dose of Ocrevus yesterday and I feel pretty good I haven’t been doing well for a long time and now I feel like taking my shower earlier tam usual I did a little dusting a very little but I usually don’t do it. But after the past dose I feel like doing something. You have to understand my job basically made me leave my position so now I am home on Retirement at the age of 58 which is very frustrating granted I know I don’t move like I used to I do have a walker but my walking today is pretty good. I just wanted you to know that there are other medications out there so just look into them have a great day Sandra

1 like
Reply

Crwatkins714, Cindy, I'm Fancy1959 and I am so glad to hear from someone who is my mirror image also. it's so amazing when we get on a chat room with all 2,000 members how we run into others who are dealing with the same stuff we are. I can trace the first symptoms I had back to the late 1990s. Looking back it becomes more obvious than at the time I simply blamed things on getting older, having children, you know the same excuses we all use. So 20 years into having this monster invading my body has left me with quite a lot of disability especially since I was not actually diagnosed with the monster until about 2013.

Please don't feel like getting a power chair is limiting your exercise. With my shoulder I could not use the manual chair so I got a power chair this summer, and boy do I feel as if my sense of freedom and the ability to be mobile on my own has been totally restored! It has really improved my mood to know that I'm not depending on anyone else two get me from point A to point B but I am doing it independently. To everyone thinking of that getting an electric scooter I say hurrah! Don't put it off go out and find one now. I was fortunate enough to find a very lightly used one and I got a high-end scooter for a little bit of nothing or $475. The scooter retailed for about $1,800 and had only been used lightly for several months.

As far as being on ocrevus I too am over 55 and my doctor never hesitated putting me on it. Go for it. My neurologist was actually involved in the research and clinical trials done on the therapy and he speaks extremely highly of the drug. And he never once mentioned my age was a factor in considering my eligibility for the therapy.

Cindy when I meet someone like you I so wish that we live very close so we could visit one another and perhaps do lunch. There's nothing like having someone who understands where you're at and where you're going to lean upon, talk to, and laugh with about all the stupid things we have to endure on a day-to-day basis. I hope we can speak often and I wanted to tell you that you have found a wonderful chat room full of passionate caring and kind people. Our chat room contains the best people I have ever met. It's a safe place to come voice opinions, ask questions, or simply speak to someone who truly understand like you and I have just done. Talk to you soon. Don't be a stranger. If we can't do lunch at least we can talk on a regular basis via this Electronic Connection. Sending you a hug through this connection and keeping you in my thoughts and prayers. Please take care until we speak again. Fancy

2 likes
Reply

Fancy1959, you have many people praying for you. You always say that we are stronger together, and we are!

I hope you come back soon with renewed energy and strength and far less pain. Update as often as you feel able. We know you’re a fighter, so gird your loins. You can do this!

4 likes
Reply

I'm so sorry you're going through a particularly difficult time, Fancy1959, and hope things start to turn around soon. The Ocrevus is just getting started, it can take awhile to reach full effect so hopefully the longer you are on it the more it will continue to help. Do be very sure the surgeon doing your shoulder surgery knows that you are immunosuppressed as you are more vulnerable to infections. I hope the procedure provides much relief from your symptoms. Keep us posted and feel better.

2 likes
Reply

So sorry about all that has been going on. My thoughts and prayers are with you and that all goes well. You have been missed!

2 likes
Reply

Fancy1959 I'm so sorry this ms monster has attacked you so visciously. Times like these males me feel guilty for complaing about my own problems. I'm a blessed that so far my symptoms have been light. My Dr visit yesterday went pretty good next to yours. A couple of changes in meds and an order for speech and swallowing evaluation but other than that good. Continue pt.

But I'm praying the meds work well for you and thing start getting better soon. And praying your surgery helps and goes well and your healing as well.

Remember we love you and are always here when you need us. And remember together we are stronger.

May God bless and heal you.

Donnie

1 like
Reply

Hi Fancy, it was great hearing from you so soon. I do have a scooter and have had one for years. I was just stubborn about getting a power chair, but now wish I had done it years sooner and I would have avoided damaging my shoulder. I will be praying for you and looking forward to hearing about your shoulder surgery. I have been putting my surgery off for over a year now, but it might have to happen sooner than later. I am originally from a suburb of Cleveland, Ohio, and have been living in Miami, FL since 1971, when I came here to go to the University of Miami. I met my husband, married and have been here ever since. I am 64 yrs. old and have 4 children, 3 boys and 1 girl. the oldest two are from my husbands first marriage, but I have raised them since they were 6 and 4 yrs. old, now 48 and almost 46. they youngest two are 41 and 36. I have 3 grandchildren, ages 23, 21 and 5.

I again will be praying for a successful surgery and a speedy recovery. Please keep us informed of your progress. Hugs to you!!

Cindy

2 likes
Reply

Crwatkins714, it's Fancy1959. Great to hear back from you soon as well. You sound blessed having such a wonderful family. I too have four children the oldest is my one and only girl and she is from my husband's first marriage but we are best friends and I love her to death. I hope the raised her since she was 5 years old. Although I didn't do much mothering with her I did guide and expand her Horizons. My husband and I have had three sons together and they have grown up it seems overnight into three very wonderful young men. All three boys are Eagle Scouts and that is a fact I'm immensely proud of since I was the assistant scoutmaster in the family and I was instrumental in them all becoming Eagle Scouts. I grew up around Cincinnati Ohio so it seems we are both Buckeyes and heart but like you I move to Lexington Kentucky to go to the university Kentucky while after 2 years of college and I never went back home. I just love the area and I've always been a horse nut so it just fits me living here. And a few years down the road then I met my husband and the rest is history.

I can only boast of two grandchildren from my daughter who are now 4 years old and six years old. The boy is the four year old and he is very mellow and friendly and lovable and the six-year-old is a girl and she is extremely strong-willed and wants it to be her way or bust. My son aren't married yet but the oldest is very close to engagement at 24 years of age so hopefully I still won't have any grandchildren from him for several more years. My other two sons are 20 and 22 so hopefully they also have years before I'll have grandchildren from them even though the twenty-year-old has been in a relatively serious relationship for almost 2 years. Yuck I hate for them to start that young dating just a single person.

We can message each other to have more private conversations whenever you like. It is funny but we've only messaged each other twice now and I feel like I'm speaking to an old friend. I look forward to our continued conversation. Take care and remember that together we are stronger!

1 like
Reply

Fancy1959 I am so, so sorry about the many issues you deal with. Thank you for expressing your heartfelt needs. We want to be supportive of you, and encourage you to continue to post anytime, as that is why this blog exists. Prayers.

Reply

Fancy1959

I am sending you prayers and healing thoughts and a so sad to hear you are not feeling well. It is so difficult to have "multiple" things all going on at once, I hope your surgery brings you some relief, especially in time for Thanksgiving! Is your shoulder pain a result of the MS?

Reply

sending prayers to you and hope ocrevus helps you feel better. Hope your surgery goes well, too. I will be praying for you. I just wanted to say you were one of the first people to welcome me here when I talked about my son with MS. Thank you for that. Take care and hope everything goes well for you.

Reply

Praying for you Fancy1959.

Reply

I hope you have a good day! πŸŽƒ

Reply

Hi fancy1959!! I feel like you!! Our disabilities are tough to handle on our own!! For a few years I have been completely overwhelmed by this ms and finding support is What gets us through this terrible illness. My heart goes out to you!! I'm struggling terribly and sometimes I just need to rest alone and meditate. I do believe in God and pray everyday. I will pray for you!! I have an aid that helps me 5 days a week. Do you have support and help?? It makes a big difference to have help. You are not alone!! I am suffering like you . I'm sorry!!! I am here for you!! Sending you hugs!!

1 like
Reply

You may also like...