I’m sort of back ....have missed you.

[Grammy80]

It has been a wild ride not feeling that great and planning a move from Maine to Indiana with the hopes of seeing my grandchildren in Canada for a month....well....you know where the best laid plans go, don’t you?

It has been so long since I’ve been ‘on’, I hope you are all doing well and I hope there have not been too many ups and downs.

My knee was sore BUT off we went to Boston Eye and Ear. It was a thorough exam and a good news visit in the sense that the ophthalmologist seemed confident that the arteries and nerves leading to the right eye were in decent shape and did not foresee GCA causing vision loss in that eye. He said he could not say for sure what was causing some of the issues with my right eye “unless he saw it happening.” At that time I was taking Actemra weekly and 12 mg of prednisone per day.

As we started back North from Boston my knee got worse...we stopped at the hospital in Portland, Maine. They said cellulitis and some fluid as well as some blood in there...so they aspirated it. No relief and they put me on Keflex.

Bottom line, on September 14, in Indiana, I was diagnosed with a staph infection in my right knee (I have a metal rod in that leg) and finally the third antibiotic has proved to affect the staph. I have been fortunate with an ER doctor who opened it up, called in an infectious disease specialist and a rheumatologist. The rheumy took me off the Actemra. They put medicated packing in my knee and changed it daily at first, now 3 times a week. It is much more comfortable.

Sadly I could not go to Canada to see my grands, I couldn’t take the chance of my knee blowing up there. I would have been in quarantine there with no access to medical a treatment. My older son who resides in Indiana had driven to Maine for holiday and agreed to pick up my cat and take him to the Midwest. I wound up riding in the back seat as he drove from Maine to my new home. I’m so far pleased with the medical treatment.

My GFR kidney filtration rate is still at 35 so there is another concern.....next!

I have hardly known what day it was....and certainly have missed you all and had you in my thoughts. <3 <3 (I’m on my IPad...computer not hooked up yet.)

[MrsNails]

Hi Grammy

Greeting from the U.K. at 4am in the morning when l should be asleep 😴

Well, you don’t take the easy route, do you? So sorry you haven’t been able to visit the Grandchildren, l’m sure that must hurt as much as your knee, what an awful time you’ve had with that.....

I’m glad your appointment for your eyes proved to be well worth the trip & gives you more confidence in that eye.

And, hopefully that Kidney will settle soon, mine has pretty much resolved itself......

Having a bit of a tough time at the moment, PMR is misbehaving but it is what it is.

Covid Wise we have more restrictions here in the U.K. as the numbers of infections rise. As l (we) were Shielded our habits didn’t change much apart from being able to see Charlotte again, who’s now two & a little chatterbox. For now we still can meet in up to Groups of Six but N.Ireland & Scotland have stopped that! Who knows what the Winter will bring?

Good to hear from you & so sorry about your knee!

Take Care 🙏🏼💐

MrsN

[Grammy80 in reply to MrsNails]

Greetings to you and sorry that PMR is acting up again. I’ve seen some news and though you have more restrictions ...so glad you got to see Charlotte. You are right....not seeing my grands did hurt more than the knee....but the knee caught up. It is better each day....xo

[Bcol]

Hi Grammy, sorry to hear your news and as Mrs N says not being able to see the grandchildren must have been really sad. Things not improving here and we are under even more restrictions from Thursday. I can't remember when we last saw our children/grandchildren and its all becoming a tad irritating. Just back from walking the bowwows which has become part of my non sleeping life at present, I guess at some time we will get back to some sort of normality, whatever that is. My sister lives in Canada and we always love it when we can visit, a lovely country always seems so clean and green and big. Lovely people. Take care and I hope your problems get resolved without too much hassle. Peter

[Grammy80 in reply to Bcol]

Things will fall into place. Do take care with Covid....I’m totally disgusted with the US handling. The disregard of some folks is astonishing.

Canada has been very strict in their handling of the virus...at least Nova Scotia. has. My son Jeff who came down to take me to Boston is still in quarantine and cannot leave the yard. Good for them for being so rigid...and lucky me to have family like that, more than lucky.

Let’s keep the faith!xo

[SheffieldJane]

I am so sorry Grammy. This proneness to nasty infection does seem to be a significant side effect of Actemra. It sounds like a frightening, horrible and ultimately disappointing experience. I know you hold plans lightly, as we all have to now. I try not to think that I would be with my grands right now in Australia. I am glad your ophthalmologist appointment was reassuring. I hope your new home is gradually wrapping itself around you. I have missed your bright presence on here. Sending you a loving hug. Keep in touch. PMs very welcome. Xx

[Grammy80 in reply to SheffieldJane]

Thanks, Jane.......Plans? I think when an autoimmune disease enters out lives....things change in a flash. It changed my life dramatically, but with that in order to survive...and hang on to one’s sanity....comes an inner strength and acceptance. Is it easier..? Not always, but it sure reduces anxiety and stress levels. It is a skill that is always being fine-tuned for me....not being active and having a measure of control was foreign to me. Not anymore.

Not seeing my grands was a huge disappointment for sure. It will be awhile before we can connect with Covid~!!! I’m thankful they are in Canada and not in the states.

Once the staph was identified...the Actemra was stopped immediately. So far, so good. I am grateful and happy where I am, thanks. Xo

[SheffieldJane in reply to Grammy80]

I am glad that my grandchildren went to Australia now. There have been only a handful of COVID cases where they are. Everybody safe, in that big beautiful place. My 5 year old grandson has taken to FaceTiming me really early in the morning, when I am asleep in bed. I can’t tell you how sweet it is to see the dear grinning face in the morning half light. Life has compensations. 😍

[DorsetLady PMRGCAuk volunteer]

❤️

[PMRpro Ambassador]

Good to have you back despite the tale of woe - and to know it is going in the right direction.

It will all come round eventually ...

[Grammy80 in reply to PMRpro]

So true....heading forward~!! Xo

[Hidden]

Thought of you recently, wondering how you were. Glad knee got sorted. It’s always one body part or another as we get older. 😒 . Hope your new home is working out. Do keep us informed. My best.

[Grammy80 in reply to Hidden]

Thanks!!!

[Jackoh]

Lovely to “hear “ your voice again. We all have individual ways of interacting that makes me imagine that person in my minds eye.

What a difficult time you have been having and how disappointing it must have been not to see your grandchildren. Glad the medical treatment seems to be good where you now are. Hope that you will soon feel really settled in your new home and that some of these difficult issues will be sorted.

[Grammy80 in reply to Jackoh]

Thanks so very much!!! I’m so pleased with the Doctors and as life would have it......we wind up in the right place at the right time. Xo