For several years, since 2020, I have Zoomed church services with a church in Hallowell, Maine, with my old friends. I skipped last week because I was a mess and thought I'd go yesterday. What a stressor! I couldn't read the hymns I'd printed; everything and everyone were fuzzy, my head and jaw were as shaky as if I had Parkinson's, and I did not feel like being the smiley face folks look for.
My sullenness stayed with me, and I knew my fuse was short. I relaxed with an audio book and then felt clear, sharp, and told my OH that I was out 'to accomplish something'. I puttered around and then sat to write when a wave of fatigue came. It felt heavy, and I was wiped out. Then I got teary and sad. At the same time, I felt like screaming and yet being silent.
I sat! begrudgingly and eventually said ________ prednisone! Give it up, girl, and ride with it. By taking the 60 mg at 4 am, my days had been improving in their way, and I think #1, I didn't chill out soon enough, and #2, I got so angry internally; it was just an added stressor. My body was telling me something, and I didn't listen. The day ended with me just saying that tomorrow is another day.
The first thing I did when I got up was acknowledge out loud that GCA and Prednisone were 'the boss of me.' This will be it until at least October 21 and who knows. Did I learn something worth sharing? I think so and I hope for my fellow buds here on the forum. The harder I tried to take over and push.....the worse I felt. Today has been much better and I was thrilled to get on and read all the posts of all my mates who travel this same journey....you all matter so much!💞
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Grammy80
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Somebody wrote a post called Patience a while back - I keep meaning to print if off and put it on the fridge door. PMR/GCA goes when it is ready and we can't force it. Now go and put your feet up and sing some jolly hymns x
I can only claim NS by marriage, son, DIL, and two grands. It's lovely💞 and I often think I'm glad they live there, even though I miss them so much from the States.
Hi there: I am in Bedford. I have been in remission since 2017 after 4.5 yrs with PMR. My family doctor at that time said and I quote “I think you have PMR go home and read about it”. I had never heard of it. She was from Ireland so had seen it before. I was put on Prednisone and except for the first few reductions in dosage was left to my own to come down and had 3 month blood tests. I read everything I could find and also eventually found this site which was a Godsend. I have been fine so far since remission and even got through the stress of caring for a husband with Dementia and multiple other health issues and then death. Also we downsized and moved into a Seniors apartment building in 2020. I had to co-ordinate all that and didn’t wake up the “sleeping tiger”. I was 72 and on a trip to Newfoundland when PMR hit full force! Had no idea what was wrong. After all night on the Ferry coming home I had to crawl to the bathroom the next morning! Went to the ER and that Dr. didn’t recognise what it was but put me on Prednisone and sent me to my family doctor and the rest was history. Maybe in hindsight I was somewhat lucky in my care and treatment. I still follow this site everyday and find it can be a fount of all sorts of helpful info. Take care and I hope you are feeling better. 😊
"Go home and read about it", now I've heard it all. I'll take a guess and say the doctor had no knowledge to share with you!!! After the first doc, I'd say it was a gift that it hit you so hard in Newfoundland, and you got to the ER and Prednisone. This site has kept me going each day since 2019. I'd not heard of GCA and wasn't at all sure what was going on in my body, lost sight in one eye. I thankfully found this website and learned; what I needed to know and often what my rheumy didn't. My DIL's sister lives in Bedford, and my family lives in Eastern Passage. I do hope to make one more trip there💞
Ditto. Hit me full force in Cape Breton in Aug. 2021 after all summer of my now-retired GP telling me it was old age. I relate to the pain of the crawling. I couldn't get out of the tub at the motel where we were staying. Finally my pharmacist suggested blood work for RA. CRP was extremely high. GP referred me to a Neurologist in Halifax. He diagnosed PMR and put me on Pred. That was Jan. 2022. Still on Pred. I now have Osteoporosis, 10 vertebral fractures, some kind of fibromyalgia (just found out about this). Don't know what treatment there is for it. Current GP knows little about PMR and seems to resent it when I try to explain something as simple as the tapering plan DL provides. She says "you read too much". Ugh.
Ugh! is right. I showed DL taper to my rheumy; he liked it. Did he suggest it? Nope! I think when we start that road this time...I'm going to ask DL for a graph or print out. Pretty sure I've seen it. I'm thankful you had a good pharmacist to guide you. Some years ago my pharmacist said..." I could lose my job, but nobody takes the amount of ____that you do, you will get pernicious anemia.'' At that time I went to the Mayo Clinic and I had a drug induced lupus for 8 years before remission. I'm thankful you got an alert and could start treatment and I'd keep my eye on that phamacist!💞
Great....because, I am going to be 'the boss of me' and that is what we WILL do because his plan last time was too , can I say bloody? , costly to me. x💞
Just happened to recall a comment about 'early hysterectomy' during Zoom meeting? Could you fill me in or send me in the right direction; I was 32 when I had mine. 💞
Thank you for sharing. Yes, we are all on the same road, different stages, different times, but you have definitely mad eyour own journey a bit lighter today.
On a conpletely different tack, or maybe not, I read aloud to myself every day in an effort to keep my voice as I don't see much of other people now that I don't work. Ran out of books which I felt like reading, but remembered a children's book I really like so started reading it. Tom's Midnight Garden. Although I remembered the ending I have still been enjoying every block of twenty pages or so I read every day, and have trouble restraining myself from continuing to read ahead silently! I recommend this book as a great way to pass the time. I wonder if there's an audio version of it?
It is available on YouTube and Amazon! A summary of it certainly interested me....it sounds delightful. Thanks for the offering, I'll be listening to it. Smart to read aloud and retain those muscles and a familiar voice!💞
Some of the best books are children's books. And when energies are depleted by illness of any kind it doesn't hurt to read a story which respects the inner child in us. The book club I go to tends to choose books dealing with major social issues and I keep thinking I'll quit, If I have to read one more book about a boy with problems.... and then we get to read something like The Dean's Watch (Elizabeth Goudge) which was loved by all of us, except one rather grumpy man! And did include a boy with problems, but handled so differently.
I love your ability to be so open and share some of the insecurities and downright upset a lot of us feel but don’t put down in words. You’re pretty amazing and it’s so good to read your posts and learn from your experience. I’ve been bursting into tears daily lately, totally out of the blue, think it’s sheer frustration. Thank you for being so honest and upfront Grammy. Big hugs. X
I wasn't raised that way, NuttyR; it was a world of guilt and shame. Fear would fill me to say what I felt, because I thought of myself as a negative. Finally, after a traumatic event in late adulthood, I sought therapy, and I found those feelings were not things I should bury....they were honest and valid.
I'll bet your tears are frustration, and I think uncertainty. Most of us can go along for so many days, do as we are told, take our meds, etc. The natural order would be improvement, but in the case of GCA and PMR, it is slow, and then we get tired. AND...that is ok and natural.
I think the most important thing is that it is ok to cry; you have reason and are justified. Maybe you will feel better. Then, the pred is so involved with our emotions that we don't control the steering wheel. Wrap yourself in this hug I'm sending....and know how many sisters you have on here. ALSO , know that getting ticked off and 'saying it like it is' is good for all of us....it is like...OK, I'm taking this out of myself...and passing it on. You can do it; hopefully, it will feel darn ______ good!xx💞
You will learn it...to move forward take the down time to refresh yourself, or nap..it is part of your treatment to get better. It is part of the baggage of the journey...sometimes you must put your feet up and drop the 'luggage.' Listen to the needs of your body. We cannot control these diseases, but we can control activity and resting. Right?💞
.....I recall that...it is now printing and will be center front on my fridge!! Here comes another, bathroom or bedroom? Where am I the most? It will go in the loo. Thanks you Kendrew... it is perfect.💞💞
Yes, you are right...maybe there are no emojis but...there are plenty of We Warrior Women....just listen to the pulse of this forum.....and be afraid, very afraid.💪🏼💞
Nextoneplease , thanks.....I never want to write something that is upsetting or scary for anyone....but wanted to say it is OK to be weepy, frustrated, angry and finally get to and through tomorrow and beyond. We have so much to give to each other...we get it.xx Wow, two hugs!💞
You don’t scare . ..but you do explain how it is for you -and most will find that refreshing and illuminating,
I know where you are coming from - and I often say when I relate my story -it may be extreme, and that doesn’t mean it is going to happen to everyone -but people do need to be aware.
Thanks, DorsetLady! One thread that runs through anything I post is the hope that people listen to their bodies..our symptoms are our best guide; chances are you know more than the doctors. If you have GCA, don't fluff off anything. On this last trip to the hospital, I felt the pain in my head and my eyes, but I waited a little over 48 hours before going to the hospital. That was wrong on my part; after feeling the headache, I should have gone in two hours, max! Be aware if you are on Actemra as I am, your blood tests tell you nothing. They will always be normal, but maybe GCA thinks and knows otherwise!! It still took them three hours before I got IV Methylprednisolone. All of you give me so much strength every day that I don't want anyone to take unnecessary risks.
All the GCA journeys are unique for each of us. Another unique thing is US, all of us and how we inform, love and care for each other. A BIG fat thank you and hug.💞
You did not upset me Grammy, I should have made that clear xx
In fact I identify strongly with the depth of feeling you express, so much so that I often can’t summon up the courage or energy to express it, here or anywhere else. Thank you dear Grammy for helping me to feel less alone. You are in my thoughts ❤️ xx
I'm so glad, Nextoneplease. I draw so much strength from you and this wonderful family on the forum. I joined this group in 2019, thank heaven!! These recent posts of mine have been an outpouring of my heart which is something I couldn't always do. But, I feel the spot I'm in now...is not the usual course of GCA. You are NEVER alone, if you check, I may be in your back pocket. I receive so much love and support here...you are all my strength.xx💞
Every day is a different day with this horrible disease dear Grammy,you just do what makes you feel happy,whether it is a weep,rant,or just a nap.You are STRONG even though you don’t feel it at present.Get on that big white horse and blow away those cobwebs,we need you back !!xx😜🐈❤️🐴🐴🐴Sorry,couldn’t find a white horse !!🤣🤣🤣💐
Today was full of 'bubbles' just little things and all of a sudden it is 10:00 PM as I write. The day disappeared but I could not go to bed without the 'good juice' I get here. Last time I rode a horse it took a chair and three natives to push my butt up there...so I'm trying to master the ground. Thanks...💞
You hang in there,a long rocky road as you well know,you’ve been there,done that,and got the damn tee shirt,but early days yet,with us all behind you.Xx 🌹❤️🐈
God works in mysterious ways, Grammy 80. Hang on in there and do what is right for you, but ask your consultant what other help is available. A song from years ago is racing through my brain....'One day at a time, dear Jesus, that's all I'm asking of you, so for my sake help me to take one day at a time'. Take care and God Bless, Kx
Crap.....so well said, picturesque speech I say! Owning a frustrating feeling is healthy too as long as we don't get comfortable there. Sometimes we have to scratch a little to find it but a positive attitude counteracts the stressors that make any of us feel worse. When you say, it could be worse...there is no doubt. I know I have MUCH to be thankful for, not doubt.💞🥰
Most of us have gone through, or are going through a grieving process for our previous good health. Grief takes us through various stages of shock, denial, sadness, anger and hopefully, eventually, acceptance of the situation. It is normal to experience these feelings and as you say, allow them to surface and acknowledge them.
I do hope that you are able to benefit in some way from your time away from home.
Thanks for sharing Grammy. I'm tending to be so much more impatient lately. Then I think how much better (more mentally I think) then I was this time last year, when I was mostly on my bed. I've just been diagnosed with some newer term for fibromyalgia, so we can add that into the pot. Anyway, patience is a virtue; not that I've ever been particularly virtuous. Lol. Hugs Grammy.
Yes, there is patience but the words acceptance and surrender are my strongest motivation when I get ugly, short, impatient and want to forge on! We have to hop over to the passenger seat for a while...much less stress and you'll feel better...and acknowledge the disease. BUT, always be armed with the knowledge from this family...advocate for yourself.xx💞
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