The day before yesterday I was going to post on how frustrated and angry that I am because of all the pain and immobility issues I have and I am only 54. Yet as the week progressed I had to eat humble pie.
My best friend daughter started having seizures and was diagnosed with the severe form of muscular dystrophy. She is only 24 and her and her husband are trying to have a child. She can't work or driven and they are still testing her to determine the best treatment. She is my niece in my heart and I her mother my best friend. Devastating
For me, I can't seem to get below 80 mg without GCA or PMR symptoms. Trying to taper and on my second week of Actermra. Despite the new diet I have gained 5 pounds and added to my chipmunk cheeks.
My GP is great she believes all doctors who prescribe steroids should go through the withdrawals. She knows how painful that can be even without a chronic disease She said no more than 1 mg at a time Even if it is a day or a week. She ordered me doses of ones and fives to help taper. My rhuemy wanted to do 10 mg steps at a time. That was a disaster for me as I was crawling up the steps again. In fairness, I think the rhuemy was hoping the Actermra would help the reduction of steroids.
Chronic fatigue is still an issue and the Actermra seems to make it worse. It it hard to tell. I had a couple of big days where I know I over did it so yesterday was a couch potato day.
I am leaving on vacation and family reunion to the east coast beach of New Jersey this Thursday. I am fortunately traveling with my father so I am using him as an excuse to travel slow and handicapped. I won't be the grand mom on the beach playing volley ball, yet I'll be there with my cookie mix.
I have entered the grief stage of learning to deal with a chronic disease. I want my old life back. I feel a burden to my family. Yet I can't change what my body does Day to to day. Yes some is mental, yet the majority is not I am ill and can't change that.
I work on my gratitude list daily and pray for thankfulness as I am blessed to have a supportive environment. When upset I work on A to Z things to be grateful. It takes less than 10 minutes and helps the depression.
Thanks to you all on this forum
TJ
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Tj2017
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Hi Tj2017, yes I understand what it feels like to be brought up short when you learn of the misfortunes of others. I am so sorry about your honorary niece struck down on the brink of her adult life beginning.
My former husband and my daughter's father died at the age of 37 from Hypertropic Myocardiopathy, suddenly with no illness or warning. A thickening of the heart wall until it stops. My daughter who was 13 when this happened and is now in her early 30's went for a range of tests to see if she had inherited it last week. The bargains I made with God prove to me that there are much worse catastrophes than my own journey with a self limiting disease. Her little preemie baby with a tube up his tiny nose and all our fears for his welfare brought it home to me too. Both outcomes were positive and an amazing blessing.
Your gratitude list is a good idea. I need to do it too. On those days when I feel ill and old and fat and finished and can see no end to this, just more conditions piling in.
Your GP sounds great. I bet your father will be glad of your company in the disability provision of your journey. I am sure that nobody would swop their grand mom for any other.
Yesterday I had been sitting on the floor playing with my two year old grandson with his tracks and engines. I couldn't get up again and this tiny boy was pushing me from behind with all his might to help. He wouldn't swop me either. I am a pretty lucky lady and you are too. 🌻
Thanks for sharing your story. It helps to remember life is an up and down journey. I have 3 grand kids and the oldest, 6, is a special needs child and a million dollar Stanford baby. Seeing their little bodies with all those tubes is heart wrenching. I am glad the outcome was positive. He is my little sweetheart. The other two, boy 4 and girl 2, keep him challenged. Me too I am, as you said, very lucky.
It may sound crazy but I discovered if I get on all fours, then roll to my side to use my arms to push me up to one knee, place my hands on the floor and have them do the work, I can get up without assistance... my grandson tries to help me too bless those boys
I have found that the best method of getting up from the floor too, after getting stuff out of the kitchen cupboards or the fridge, both on the floor. I decided I had enough of that and have ordered a fridge freezer, being delivered on Wed. Will be able to see what's in the fridge standing up hurrah! Also have now developed arthritis in left thumb and sprained right wrist so can't lean on hands so much, hey-ho.
Several years ago when various things were wobbly in my family and life I saw a story about a little girl with terminal illness in newspaper. She had been given a puppy and the joy on her face despite visible illness made me think that no matter what, I was lucky and no matter how bad things get, there is still joy to be had. I still carry her photograph in my mobile phone wallet and thank her for the insight whenever I see it. Probably sounds weird but we all need to be reminded why not me rather than why me.
MD - or multiple sclerosis? What an awful experience for her and her family though. I often say lurking on some other forums for a few hours brings home to you that PMR and GCA aren't that bad really.
I suppose your rheumy was working on the assumption that many people manage 10mg at a time reductions when at these very high doses even without Actemra - but I'd have thought he needed to wait a bit after starting Actemra before sending you off on that journey!
Enjoy your trip - and fingers crossed it all goes to plan.
Pred head. Yes, muscular dystrophy. And yes, I think my rhuemy really wants to show successful prednisone reduction with the Actermra. I am the first "on label" patient for GCA they are treating. It must be frustrating to treat your patients and knowing they will have those terrible side effects. I know it bothers my GP. She has the biggest heart and is one of the best doctors I know. Interesting fact she shared with me is that many of her patients are declining. She is diagnosing more chronic diseases than before and patients with chronic diseases are not doing well. She believes it is related to all the stress we are experiencing in the political arena. People are afraid of the security of their future medical and financial benefits. They are experiencing high levels of stress which she believes is a strong trigger. Trumps tweet yesterday didn't help. I am so embarrassed for my country.
Yes, I lurked at the MD site as well as some others. Such suffering. I also had my hair cut and colored this week as well. My hair dresser has had lupus for 25 years. For the first time she shared her long journey with me. She was on prednisone for 6 years. Off and on during the 25. She currently takes plaquentil and is doing ok. She was a great resource on pacing and reminding me the side effects will subside.
Thanks again for sharing your knowledge. Have a great night as well. Today is the start of the holiday weekend here in the US and I have nothing planned other than rest time. Need to save up my spoons for traveling next week.
Wow, TJ, the family reunion sounds like a lot of fun...for me, it had always been my dream to go to a big family reunion.I recently thought I had found my father's family and was about to go to Oklahoma to meet them all when my "aunt" and I got DNA tests through the same company ..it turns out we are not related! I had been talking on the phone with this lady, who is blind and wheelchair bound. She sent me photos of her brother, who my mother had said was my biological father, I thought he looked exactly like one of my sons. When her children asked her what she was going to do with me now that she knew we weren't related, she said,"I'm going to keep her"😂..there had even been a news article in her local newspaper about me, a long lost this baby from Japan that had finally found her father's family.
I hope you feel better for the reunion, it's really frustrating to think you're a burden to your family.I think of I I felt when I took care of my mother and I don't remember thinking she was a burden. You are probably the only one that thinks that.
I just started a gratitude journal, too, on an app for my phone. It does help to think positively.
On the other hand - my brother traced a large chunk of family we didn't know existed and eventually went to visit them. He was sadly disappointed I'm afraid. I had always said I didn't know anyone in much of our family who made me desirous of tracing my family tree on either side!
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What a difference a consultant makes!!
What is the end like:)
Pred Free for 3 weeks
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