Each morning and evening, at least, I check on folks and look around and garner some more information on the forum, and don't always write something.
I'm a pretty enthusiastic person....and reading around the forum and being a part of this experience ALWAYS fills me with a feeling I can't quite articulate. For one thing I'm never walking alone...and you all give me strength.
I hope your day was a good one...I was surprised by a friend who wanted some time out of her house so we had a bit of an outing...always includes a little lunch. Sunday in mid to northern Maine is supposed to be very icy and lots of snow. I think my cat, Gus, and I are going to hunker down with some kind of project, ?? not sure what.
Have a good night and weekend....be as well as possible~! xo👬👬👬👬👬👬👬👬👬👬⬅The Forum
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Grammy80
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I love reading your posts. You always see the upside to everything and I always get a bit of a lift. Keep them coming! 😀 I think we are going to hunker down here too. Horrible weather today....
What a nice thing to say....you have no idea how much strength I gather from being part of all of you!!! I fought depression some years ago and dealing with GCA alone and the closest family 9 hours away....I have adopted all of you and you keep me going~!!
Hello Grammy,
I think there’s going to be a lot of hunkering down today, it’s Very, Very Windy here in the UK
My lovely husband & l are going to sort ‘That Cupboard’ the one we pushed in ‘What shall we do with this?’ when we moved here!......
It is good to read how other people are getting on, l’m currently experiencing a Flare of my PMR & am waiting on the Methotrexate to start kicking in fully so l can start reducing the Prednisolone as it’s causing me shortness of breath again!
We're watching ATP semis from Sydney (replays) Spain v Aus ... Enjoy... Arsenal was my twins team growing up... Many a freezing Saturday afternoon spent at Highbury 😰.
Well, being an American....along with other shortcomings....my knowledge of soccer, or is it football, is limited. I love soccer and it is more popular here than before ..I don't understand all the rules for sure. Big football happening here now...I've always loved sports.
Isn't it amazing how many games have been created by throwing a 'marker' up at the end of an area for 'the other guy to cross?'.....SCORE~!
Sounds like a good plan!!! I used to paint, never sold one but I loved doing it...I think my project is going to be to try to set up an area again where I can give that another go. It means attacking a closet (or is that a cupboard) too!!
I love your optimistic posts too ( never feel that you can’t complain though) this is not an easy journey for any of us. As you say though, it really helps to have others who understand, walking alongside us. My creativity comes to the fore when I am feeling upbeat. A project is a very good idea. I have decided to write old fashioned letters to my loved ones far away. I have got all my materials together in a new green leather writing case. The young barely know the joy of receiving a newsy, fat letter. I hope I can still write!
Love that idea!!! I mostly type now...and the idea of making it prettier is awesome....clever to dictate and cut/paste....you are a 'techy'~!! Thanks!!
By all means, I will. One of the craft stores in my area is going out of business....I shall have to hook a ride and pick up some stationery. Thanks MrsN~!!!
Thanks Jane!! When you said your creativity increases when you are upbeat...I can really relate to that. That adrenalin and those juices flow...and there is just no end to what we can do. When that happens...I call that 'riding the wave' and I try to keep it going.
I hurt and I get frustrated when I can't see something and believe me... I do feel comfortable complaining here and may well be after a few upcoming appointments. The demon you have all saved me from is lonliness....somebody 'getting it'......if I cry, which I have, it is like crying in an empty auditorium. Since I have no family within a reasonable distance....you have all filled that space. I see all of you....going forward and grow from your courage. I don't know about most of you...but if I am down...I feel physically worse.
What is that song? The wind beneath my wings.....that's all of you!!xo
I knew that you were a kindred spirit. My two daughters and their two children each, now live in Australia. My OH and I live in Sheffield, our son is studying in Edinburgh. These diseases can isolate us. I haven’t the energy or motivation to pursue friendships.
You are no longer crying into an empty auditorium. We are all here! Xx
Thanks so much....it is tough not to be near any family. My Canadian family has come twice for a week at a time to make my apartment 'safer' (less cluttered...they are minimilists...and they were right) and then again to get appointments and medications squared away. I've been trying to make arrangements for me to spend some time near them in Canada this coming summer....but no matter what I paid in health premiums I would only get emergency coverage...so I better be a bit more stable with the meds etc.
The toughest immediate loss for me has been not being able to drive...I sold my car and have to hire transportation to appointments. It is really the loss of SOME of my independence more than anything. I think it is almost easier now that it is winter and I'm kind of stuck anyway.....
My two grands are 12, Mattias and 14, Ella....and I miss the terribly. I'll bet yours are younger and still cuddly!! The heart never stops cuddling...even when they hit 50 or my other son....59!!
I'm very fortunate that the little church I go to...folks call or drop by. I'm sure you have all been through that period when at the beginning it seems like someone is always there.....and then it just kind of fades away. I get it...I'm not going to 'heal', it is chronic...and most of my friends are in their 60s and 70s...ok, a few in their 80s....and they get plain tired.
Wow....I just go on and on.....I hope you don't mind....xo Have a good day tomorrow...!
Of course I don’t mind. I can certainly relate to missing your grand children. I have Sam(11) Ruby (6) and from my younger daughter Theo (5) I looked after him from baby days while his mum worked, and when his mother had his brother early and had to stay in hospital for a few weeks. We became very bonded. That was little Rafe aged 2 + 9 months. Their decision to re- locate to Australia also was a bolt from the blue and still quite raw. At least they are all growing up together. I have been to Australia 10 times and they come here too. They are incredibly cuddly. Theo managed to write to me from Nursery and got them to post it - not cheap.
I hope you can sort the insurance situation out. I don’t drive but find that train travel suits me.
Although our diseases are chronic, there is the hope that they will burn out and we can work on getting stronger.
Your little church community sounds like a great comfort. I hope to do more reaching out in the Spring ( judging by the poor little song birds this morning, they think it is here). Keep in touch.
I'm so happy you are able to visit back and forth!!!! What a precious group of children!! Loved the story of the letter.....I have a letter I keep on my desk that my grandson wrote me 4 or so years ago....there is no postmark date...but I can tell by the writing and the envelope....it was a while ago. It is a treasure to me. xo
Does the having to give up the car feel any better when it is claimed that it costs less to not run your own vehicle but take taxis for most short distance travel that aren't convenient with public transport? The overall cost of owning a car and depreciation, maintenance, insurance, fuel, parking charges and so on is considerable - far higher than you think at first glance. And the taxi does door to door...
There is a lot of truth to that~~I can't believe how much extra $$ there is in my checking account. That makes it much easier to pay someone $20 for trans for an appoinment. A big minus to living where I do it that there is NO public transportation, so there is a retired man I call upon or taxi service which doesn't run on weekends. If it wasn't for losing those expenses you mentioned....paying for all the rides would be difficult....some weeks there are two appointments....sometimes five!
Now that I am out of crazy prednisone brain and have some clarity, at least for the moment, I miss it when I have something for the post office, or feel good and could go to the market....just the freedom of a small outing when the need arises.
Acceptance and thankful I can afford to hire people.....that is what I have to keep myself aware of.
We are getting to an age where we must consider giving up the car. It's not the cost of taxis, etc but the sheer inconvenience that puts us off making the big decision. Also, just to have a little trip into the country or round the local lakes cheers us up immensely - good for general well being!
I grew up in the back of beyond nowhere! We had 2 buses a day, morning to take kids to school, one back in the evening. One extra on market day and Saturday and nothing on Sunday. So this is luxury!
Very difficult getting on to buses and the mini railway station is 1 1/2 kms away (I can only walk about 500 metres)!!! Trouble is, even if I managed to get into Soest I wouldn't have the leg strength to walk after I got off the bus.☹️
I'm just jumping in....and no longer have my scooter....but when I did, it came apart in five manageable pieces and I had a husband who lugged it. I did take a plane to Prague twice with it....at that time you could ride it right to the door of the plane. Not so sure after 9/11?? Then I just rode it out of the airport but again...someone else took it apart, I would remove the battery at night and plug it in....and could leave the rest of scooter intact. Prague didn't have ramps off the curbs but it got me around....and again...then 14 years younger and no GAC~!!
It is all about the point A to point B stuff I think.....If it was just about willingness...I would travel the world.
I think it was mid-October I started Actemra every other week along with methylpred. Then in December I started injections every week and finally started a taper of the methylpred second week in December and am presently holding at 24mg per day. So far so good.....ups and downs but my symptoms have been pretty quiet for the last week and I can leave my glasses on longer without feeling any pressure on the left temple.
I'm about as far from an expert as you can get....but I know what I feel....and if I can ever be helpful...just give me a shout. I'll be interested to hear what they decide about the Actemra. It was a last ditch effort for me because of my history.....but so far OK~!
Grammy80 you rock!!! I too love the folks on this forum and encouragement they provide. As you mentioned, we have all sorts of football games today to keep us occupied. I hope you have a wonderful week ❤️
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