I'm so sorry Brenda. I remember when I was at my sickest it was so isolating. I didn't want to go outside or do anything, walking was so hard. I didn't want to be back on prednisone because of the mental side effects it had caused me in the past.

It seems like we get stuck in this place where we want to have a normal life, but the only way we've gotten there is with medicine we don't want because of the side effects.

Eventually I had to go back on imuran and prednisone, but it was a really difficult decision.
Ali

My Dear Brenda,to read you post is very sad my heart goes out to you! Yes I have 3kids at home and a husband but,no support.Hubby still thinks I am lazy and my kids only think about them-self.I spoiled them now that it is my turn to request some help- it is inconvenient .my friends -- only one visits and we talk on regular base even when I m in pyjamas and unwell the others I haven't heard from since march.I used to have lots of hobbies but can't concentrate at the moment.even when the house is full I'm on my own--- what can we do to change this?-- I haven't even been winging to scare them off!! I suppose every one is busy working. You have many different health conditions which makes it so hard to find the best solution . ? If you up the prednisone will you be able to move around and drive again? If you need someone to email or write to please let me know,Im here for you,sorry a bit far away (Australia ) but if you are up to writing ,thinking of you take care !saskia

I'm sorry to hear this Brenda. I am single and my 16 year old son lives with me part time. It can get pretty quiet when he is gone...and he is gone 5 days in a row 2 times a month.

I know you really wanted off the Prednisone and if I remember right, you aren't on a sparing drug. I think this is the implication of trying to get off the meds. It is a choice of mobility with the drugs or reduced mobility without. If you really don't want to go back on Prednisone, what about a sparing drug? They have side effects too but I find not as bad. The only bad part is they can take months to work. If you don't want to wait months, what about a short stint with Prednisone until it does work?

I know I am not willing to give up mobility.

Hi Brenda. I am sorry to read your post. You are having a hard time. Why not think about the advice Lexis has given, its worth a try and may help you come off those painkillers too. Autumm

These diseases are very isolating, Brenda, and quite discouraging at times. Even though I can still drive, I don't drive everyday. Sometimes I don't feel that it's safe for me to be on the road. BTW, you are amongst friends here and can vent any time. You are not being "a brat." This myositis journey is a grieving process, so there are times when we feel angry and discouraged. It's normal. We have lost our former life. When I get the most frustrated with my limitations, I focus on my hope for the future, meaning that when I leave this world for the next, the Lord is going to give me a new--and fully healthy--body. I know that you trust the Lord also, so maybe the thoughts I've shared will give you a few moments of hope when you're lonely and discouraged. Blessings and best wishes to you, Brenda.

Brenda, You always bring up some important issues that we all face. I live with my mother. I am not ashamed that my career of teaching school is finished. I have a body that can no longer handle things which require a lot of stamina. My concentration abilities are awful and this is part of the disease. We are all reminded daily of what we can no longer do, but I do not allow this to rob me of my joy. I avoid driving if possible. I do drive to the doctor or the pharmacy.

I think medication helps at times. I think it is better to try a med for a while and give it a chance to work. Usually, it is our disease that is making us feel bad when the meds are only trying to help. I am going on cellcept again. I am going to try a small dose and watch the results with the doctor.

I think Nanny hit the nail on the head about focusing on The Lord. I know He gives us opportunities to trust Him. I spend time listening to my pastor's DVD's. I also memorize new verses. Our joy is NEVER in the things of this world or our earthly "accomplishments." I am trying to strengthen my knowledge to be ready for bigger testing. Remember, the bigger the test, the greater the rewards, but you must use all that you know of The Word. Brenda, remember that the greater the pain, then flex those spiritual muscles and thank God for the reward opportunities! Trust the verses!

Thank you all for your kind words and advice. I truly needed it and still need it everyday. I started on Acthar injections two weeks ago and the only thing that I am noticing at this point is my increased hunger and my elevated blood glucose due to either my eating more or my increaed Prednisone.

It was so funny on Friday, my neurologist had his receptionist call to schedule my next IVIG and I informed her that my Rheumatologist who referred me to the neurologist had advised me that I could stop the IVIG and start the Acthar. My last IVIG was very negative and I was sick for over two weeks. I had more pain, was not able to stand for periods of time, faint and nausea. I had told the neurologist this on my last visit after the IVIG and it was if I had spoken to a wall. He told me that I couldn't stop without a reason why. My rheumatologist had informed me on each visit that the neurologist never contacted him to give him updates and he felt that was unacceptable. I know these IVIGs are putting a pretty penny in my neurologist pocket plus the one person that I have met there has been getting these treatments for years. I explained to him how I had to take unpaid time to come in for the treatments, plus pay to stay at a hotel there since the treatments are all day and I don't really have transportation back and forth and he didn't get that either. This disease is crippling me financially as well as taking away my guality of life. Again I get tire dof complaining but as you all know also, no one listens to us and they don't take us seriously.

As long as I can drag myself into my work chair and not take more unpaid time, my place of work thinks that I am doing "fine". No one considers that I am a prisoner in my own home. I am blessed to have a loving relationshipship with Jesus and I can call on him at any time, which I do often. I am blessed to have a daughter who schedules miuch of her time around my needs and I feel guilty for that. She knows how I feel and she expresses her love and understanding of my situation She always says that she knows that I am a people person and that I love to talk and need to be around people, but she has to work and I don't want all of her free time to be taken up with me and my issues. I had my eyes examined Saturday and plan to order my glasses this week. I am going with the least expensive glasses that I can find. I don't need anything fancy, as I wear them only to read, now that I no longer drive and don't need them to see distance or in the dark. I am trying to read a lot more, like I use to do I also baked my granddaughter and aunt pound cakes today. I was going through my recipes and told my son who arrived from AZ a few days ago that I wish and it is true that I could bake a different sweet item each day. I have always wanted some type of small restaurant, food truck of stand and I told him that I would love it to be a sweet truck with different desserts everyday, I could sell desserts with tea. I am a tea drinker and everyone sells coffee these days and I wouldn't want to compete with that market. I am trying to utilize my brain power. Thank you my onlien friends. You make me feel a lot better.

Brenda, I am just thinking, are yougetting to church regularly?? what about a sweet baked treat for a ride, and getting a group of 3 or 4 who would be willing to do the driving for you??
I so feel your pain. IVIG can be just terribly hard. I was able to get it close to home in a hospital without having to travel and some go well and others are a bear.
I am so glad you can still work.
Wish i could lift your burden. I got much better and my glucose levels went down with a plant based diet, i first watched Fat Sick and nearly Dead, did some juicing and then transfered to a vegan plant based diet with Dr. Joel Fuhrman. It has allowed my A1c to go down to 4.4 and my fasting glucose is now 74 from way over 130 a few months ago.
Online is a good way to connect too. t here are two facebook groups i like that give me more of that day to day connection, better than here even...
Good luck to you, sending prayers and healing thoughts...
Shawna

Hi Brenda - I so understand! I am single and the phone doesn't ring much - more drs offices confirming my appts! I don't have a hubby or child- so it's me. I have God too who carries me each day.

I like what Lexi said. I know a lady on one on the FB groups decided to up her prednisone for mobility as she couldn't handle the lost of mobility. It's a personal decision. I wish there was a natural way.

These websites help us too. I am practically homebound with my heart issues.

I hope you feel better, "joy comes in the morning" -:)

I also like the idea of getting to church with some ladies that Shawna brought up. I can listen to the sermons as they post them online too.

Brenda. Why do you see both a Neurologist and a Rheumatologist. I would see that as a conflict in treatment and in your case this is clearly so. You are paying two times for the same medical advice and they are not even talking about you to each other, ditch the Neurologist , I would. Autummqqqqqqq

Again thanks to everyone for your words and support. I have also voiced my opinion on seeing both a neurologist and rheumatologist. My rheumatologist referred me to the neurologist so that he could order neurological testing for things that I complained to my rheumatologist about and he did, but never discussed his findings with my rheumatologist, but it may also be his staff since I have seen the notes that were addressed to my rheumatologist in the files that I got for my appeal. The nurse called me to schedule my next IVIG even though I told the doctor that I no longer wanted the IVIG. When I informed her that I was no longer taking the IVIG and that my rheumy knew it she was surprised. I have been attending church on a very regular basis, We had a Be the Church event last Sunday where we all volunteered to do something and since I no longer drive and have limited walking ability, I volunteered to write letters to firemen, policemen and public figures thanking them for their service to our community, I was a little afraid that my handwritten wouldn't be legible, but God took over and I was fine. This past Sunday my son who has lived in AZ for the past few years attended church with me and I attended a different community group after service. Community groups are our form of Sunday school and I was looking forward to meeting new friends. I tell everyone that I am seeking Mr. Husband and I am serious. I don't want to be single for the rest of my life and I always say that I am a good catch. I have to laugh at myself. I am trying to keep a positive outlook. I have taken the Acthar for two weeks and the only side effect that I have noticed is my increased hunger and it is really bad. I have been eating all day long. I am not going to let these doctors control my purse anymore. I am not paying for meds that my work and my not. If they want me to try something they can give me samples first. I have increased my Prednisone and will taper it up higher next week. Again than you.

Hi Brenda. Good to hear you are more positive which means you must be feeling a bit better on the higher dose of Prednisolone. I am thinking of you. Best wishes. Autumm

I am feeling better with the higher dosage of Prednisone, but it may also be due to the Acthar. I have been taking it for three weeks and received my second delivery today. In fact I have to get up now and take my dose. My glucose stays elevated over 200 each time and I am sure that is the Acthar. I have an appt next week with my Rheumy to review what has changed since I started on the Acthar and the other medication that he wants me to take, but which I don't plan to take. It is mainly for RA patients and has a lot of dangerous side effects. I wish that he could give me something for my mental state. I can barely spell words and my memory is really slipping. Thank you everyone for your kindness and support. Even when I am not online I think of you all. My middle son is staying with me for a while and he has been a positive on my life. I was afraid that he would drain me because he always had so many issues of his own, but this time is different. He and I had been talking over the phone on a regular basis for the last year because he was unhappy and having one challenge after another in his life. I was able to help him long distance even while it was draining me, but I know the Lord and I always turned it over to him and convinced my son that it is all about God's will not our own. He has helped me by sharing his thoughts and what he is trying to do each day. I look forward to him getting back each day to share what he has done. I have been helping him research classes and business licensing that he needs. He also have attended church with me each Sunday since he has been here and even attended a small community group (Sunday school) for his age group and he felt like he belonged there. He and his sons have been together at my place each weekend. The oldest one spent the summer at my place and attended my church also. This is all going very well and we know that it is all due to God. Thank you to each of you. Have a great night.

Wow You bring tears to my eyes because I have been there and sometime I am there. I am 32 years old I have been labeled DM for 10 years.6 months after the birth of my 3rd daughter I lost my vision and partial hearing , pain to the touch head to toe, mobility gone. After a medical team and a miracle I can now 2 yrs late see enough to take care of my little ones for most days take care of my children. They believe it could have been caused from steroids. No one know but I do know being alone. Finding a church friend to talk to on the phone helps a lot , a bus that picks up disabled is a good way to get out if you feel up to it. But I can not stress enough food allergies can HELP with energy. I had to raise money to get a nutritionist to test me , because the doctors said that does not matter and the test they took were fine. I hope this makes since. My vision is not perfect, nor am I. HE is always listening and wanting to here from you.