Earlier last month my rheumy said he wanted to check my kidney function among other things and my GFR was 35 when the low acceptable number is 60. I just found out it has gone from 56,45,35 quarterly since about January. That can also affect the vision I believe.
Did I tell you I'd been referred to Mass Eye and Ear in Boston? The usual, the ophthalmologist says more prednisolone and the rheumy say ...whoa...not so fast.
I've also made a decision to move back to Indiana where I will be in a small home that my husband owns as a rental. He lives just two blocks away and will be happy to take me to the doctors or go shopping. Within the last three weeks, I've fallen, lost some more vision, and gotten some news I didn't really want. I feel I'm making the best decision without it being made in a crisis situation. There is just too much to expect from any friend and also wondering about living alone. I also have a son in Indiana. I won't move until October and I'll not be moving from this group. xo
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Grammy80
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Marilyn, so sorry to hear all that you are going through. I think you moving to Indiana is a very wise decision. It's great to hear that your family is so willing and able to help. I wish you could go sooner. Did you go to Boston? I'm so glad you posted. I have been worried about you but now am confident that you will rally to this new adventure and challenge. Sending my love and prayers. Jean
So glad you have made a decision that is in your best interest. I have so many things going on and don’t know what I would do without family. October will be here before you know it. Try to enjoy the cooler weather and know you will finally have the support you deserve. Sending prayers and positive energy. You are an inspiration to so many of us!❤️
Had my appointment in Boston on Friday with a great surgeon at Opthalmic Consultants of Boston-Dr. Iwamoto. She is also associated with Mass Eye and Ear. Having vision problems with my left eye because of a droopy eyelid. They need to rule out neurological problems. I have to go back ten years and look at pictures of myself to see if I notice the beginnings of a droop. Boston has incredible doctors. Keep bugging them for an appointment.
Good for you and good luck. I was raised in Massachusetts and I can remember my mother going in there for ear issues. I'm so glad you have a practitioner you have faith in. xo
Age or pred, a question most of us here ask a lot.
At least age has given you the strength and wisdom to make a difficult decision. You may have to put some aspirations on hold but your mind will be more at rest and this will help you recover. Keep strong. 👩🏼🤝🧑🏾👩🏼🤝🧑🏽👨🏼🤝👨🏻👨🏻🤝👨🏻👩🏼🤝🧑🏽👩🏼🤝🧑🏼👨🏽🤝👨🏻👨🏼🤝👨🏼
What a lot happens when you take a little break from the forum. (Me)
Your decisions sound sensible and well thought through. It is so important to make these hard choices whilst they are still choices. I have seen a number of my parent’s generation missing that moment, my mum & my mum in law to name but two. Both of my daughters have a rocking chairs on their Australian verandas for me (us) and the visas thought through. I have raised such lovely, bossy girls though 🙄. The Pandemic allows for procrastination whew!
There are so many potential assaults on our vision. I went to the eye clinic yesterday, I have; diabetes, Glaucoma, Cataracts, vitreous detachment. I hate it when consultants disagree because they see the world from their own point of specialism. Decisions, decisions!
Does the song say “Indiana wants me”? I have always thought that it sounds such a romantic place. PM for a chat Marilyn - so glad you’re not leaving us. Everybody loves you! Xx
not to be rude to you Grammy 80 because for you it will be..... (good decision) butI laughed when you, Sheffield Jane said "I have always thought that is sounds like such a romantic place.!) (I practically came to fisticuffs with a redneck in southern indiana a few years ago. (Perhaps the start of PMR!)
🤣😄😊YEP, Indiana was my introduction to rednecks! There are pretty parts...Lake Michigan and down south. With the right companion anyplace can be romantic...like Pro said....Indiana Jones maybe???🥰
The special quality about this wonderful 👩🏾🤝👩🏼👭👨👦👦👨👧👧👩🏾🤝👩🏾👩🏿🤝👩🏼👩🏿🤝👩🏽👩🏿🤝👩🏽👩🏿🤝👩🏼 is the support and knowledge and being able to be understood.....I'll never leave the forum. I'm thankful the decision was made not in crisis mode but an honest feeling of being able to look toward a better quality of life for longer! The house is about the size of my apartment...single level...and I'll be familiar with my surroundings in short order I think~!💖💖
Looking forward to hearing about your epic move. On PM or email because I want a blow by blow. Don’t forget to register to vote as well as doctors etc.
I will have secured a mail in ballot for this election, for sure. We had party primaries recently and I 'mailed in'....I'll probably vote before I begin to plan the move...October I think~!! xo I've got to keep my priorities straight.
An overwhelming list! I had vitreous detachment that resolved itself. I hope so much that this happens for you. Sometimes I praise my body for doing its best to remind myself that a lot of what goes on is the poor thing trying to resolve what’s been thrown at it! A bit like talking to flowers I suppose (I have been known to pat a rose gently and admiringly..😅). I know - bonkers. Another symptom? 😱😂
I don't think that steroids contribute to a lowering of the GFR - but if they knew it was low in January I'm surprised they have waited so long to think about it, but I suppose it is another thing to put down to Covid. It is a factor of age - the kidneys wearing out a bit - but shouldn't be as low as that at 80.
That was a great link....I will forward that to my family and I found it informative although a bit scary. I don't know why it was never mentioned earlier...maybe because they didn't feel they could do anything? Should be my call. I have bloodwork on the 11th to see if the meds he removed will help.
Because of the kidney issue, when I go to Mass Eye and Ear in Boston, I am going to see if I can arrange a thorough well rounded check up with them, Lahey Clinc or even Mayo Clinic, someone to look at the 'whole me' and look at the inevitable. I feel I'm saving my sight at the expense of my organs??? I think the kidneys need a closer look. I want to know what I can do besides drink water.
Since my grands are in Canada I'd love to see them before I go to the middle of the country...but Covid is really going to complicate that. My son in Nova Scotia and his wife will handle all the logistics for me, but I think I'm looking at October.💖💖
I have run into that decision to move/ change living arrangement a couple of times in the last few years after health was compromised. Each time I improved enough so as didn’t have to go further. However, it’s getting closer each time. I understand that you’re finally there and it seems a good, workable solution for you that you arrived at after being able to think it out. I don’t know enough to give a helpful answer about kidney test. My best and do let us know how everything goes. 🤗
Thanks so much....I am grateful that I could make the decision without it being a desperation move. The key....acceptance, in my case that was it. I always try to reach for a level that will maximize me. Going to any kind of 'living arrangement' in Maine I'm afraid I'd go down hill. In the situation in Indiana I think I'll do better for a longer period.....no guarantees but it is uplifting. If it wasn't for the virus...I'd see who wanted to fly over and help me pack...on me!!
My daughter-in-law will arrange all that....and I used to think she was a 'bossy daughter' ...but I'm so thankful for her.💖
They get things done, like we need, we just have to be sweetly, acquiescent and lo and behold packed boxes.
We had a firm pack for us. Drawers and wardrobes still full and taped. They were so fast and efficient, they even packed the crisp packets from our lunch. Then a cleaning company to get it all ship shape.
It takes the physical and mental stress out of it and we need that.
There can be such a release in acceptance - and that you will be near those who care for you is a shining bonus, alongside the inevitable missing of the familiar. And isn’t technology great for keeping in touch and enabling you to tuck this group into your tablet or phone and take us with you! 😘🌺
That sounds like a very well thought out sensible decision 👏🏼 will you have some help with moving as you don’t want to over tire or stress yourself.
I planned & executed our move two years ago, l don’t know how l did it (l do really, the correct Meds MTX & Pred) l certainly couldn’t do it now, that’s for sure!
But if you start now on the days you feel up to it & do a little each day (Packing or Planning) it all helps....
You have to be especially careful with your eyes & tendency to fall. If you don’t already have Copy Letters from your Consultants ask the Secretary’s to send them for you, you hold on to the Masters & get copies made for your New Primary Doctor & any Future Hospital Consultations. Ensure you have a good supply of Meds & do bear in mind you may have to increase your Pred for a few days, at least three, the day before, the day you move & the day after.....
Take any offers of help & delegate as much as possible! And, Rest as much as you can!
All great advice and so much compassion~!! By the time I do Boston etc...I'm thinking October. Plan A is to go around with a trash bag when I am inspired. I'll bet you did. Before you move it...do you need it, want it?💖
It seems a very sensible decision Grammy. There you will have more support and as others have said good to make the decision while you can and not forced into it when it could be more of a problem. Sorry you are still having problems and really glad you’re not leaving us!! Xx💐
I'll be around for sure, you folks saved my sanity when this GCA hit along with 100 mg of prednisone per day....I thought it was over!!! I'll always need you and want to check on you.xo
All the best in your move,sure its best for you.xx
I’m pleased you’ve made a decision to move. We did that some last October. I was the stick in the mud but can honestly say it’s the best thing we ever did to be near family. Hope you do too. All sounds idyllic. 🌹
Thanks for your response....I know what a blessing it has been when my family has come down from Canada. Now, to have someone just up the street yet my own little place..I do believe it is for the best and am so happy all has gone well for you. xo
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Is it steroids or PTSD
Long term steroids
Flare or nerve pain, or is it the same thing?
