How can I put this politely? After much 'patient involvement' with the rheumatologist and the ophthalmologist, I finally have my appointment with the Neuro-Ophthalmology Dept. on September 10. (I'd not heard anything from Boston so I sent a gentle reminder to the rheumy....who said "Oh, you have to call the ophthalmologist." GRRRRRR) So, for the two weeks, I was told it would take for the appointment ...there wasn't even any contact by the Maine docs. I'm disappointed it is a month away, but everybody going there is trying to save their eyesight.
🌈You have to be your own rainbow! 🌈
Honestly, it takes all my strength to double-check on the doctors and pharmacies! It is exhausting~! I'm all done complaining.....for now.
Also, the little house I was going to move to in Indiana tested positive for mold when it was inspected so that location is out. My intentions and hopes are the same....just have to see what life delivers...and when.
xo
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Grammy80
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Are you moving to be closer to family? My parents moved to Indianapolis in the 70s. This may sound strange but visiting there somehow made me think of The Great Gatsby.
Yes...I will be closer to family there. Indiana has many faces~~from the shores of Lake Michigan in the North, Indianapolis is definitely the cultural center with some incredible 'bedroom communities' and then down South there are woods and hills....not too common a site in the agricultural portions where you see thousands of acres of corn, soybean, mint and quite a few high blueberry bushes. xo
Just looked it up. The James Whitcomb Riley memorial. Indianapolis is a very interesting city, and we did also see some of the surrounding countryside. I would never have visited without my father and stepmother there, and I have no reason to go back now they are both gone, but I am very glad I saw it, a number of times, actually, over the course of close to thirty years.
There really is a great deal to see in Indiana and interesting history....but like you say... nobody usually goes there unless drawn by family and then they are surprised. ox
How frustrating. It is worrying how much we are expected to chase up our own treatment and provide the essential communication between departments. Sorry the house was no good but mould simply won’t do. I hope and pray that the perfect little home presents itself soon. Good not to be dismayed by setbacks!
I jumped because my epipen jammed and then suddenly released, I ended up spraying valuable Tocilizumab all over my leg. Fortunately the delivery provider was very good about it and just noted faulty epipen then will replace it - I offered to pay.
I the ended up feeling pretty unwell all day - like covid without cough or fever. I am such a klutz. Xx
I read the posts on this forum most days and quite often find supporting posts from you to people such as me,and just like me I have no doubt that we all value your input at a time when you have more than your fair share of health issues. So I find it interesting to read things like "I am such a klutz," plus other self deprecating comments and wonder when you might give yourself permission to be someone who has every right occasionally to say "shit,enough,how much crap am I supposed to take," and so on. Anyway,I think you are brilliant,but then that is why we seek out people like you for help and advice.
Yeah,on the equally serious subject I learn more about my illness every day but just as much about some of the new NHS ideas regarding patients. Just the latest example being that my rheumy' spoke to me last week and told me she had a cancellation,would I like it ? (who would say no ?)
She told me to contact my G.P. and arrange blood tests.Called my G.P. and he said no,you need to get the rheumy to send the request to you,you then call the surgery and the nurse will call you back with an appointment,this is designed to stop Consultants passing on costs to the G.P. practice,blah !blah! Called rheumatology,requested documents and assured they would arrive first class,(my last chance was to set up the appointment on Friday as the appointment was Monday,)they arrived Thursday afternoon so I did the call back thing and the practice nurse called an hour later to say that I had an appointment for Monday 11:30.Er ! my rheumy appointment is for 11:20 Monday ? Well,no one told me that etc,etc,she says,will get back to you. Another phone call later I get an appointment for Friday but I will then need to take the samples to the hospital,no problem I said.
Samples duly taken I head off to the hospital,excuse me where do I take these samples ? We don't have a reception here so you need to go down the long corridor turn right ......... and so on.I arrive at the temporary reception exhausted,here you are,my blood samples.Sorry,you need to take them to where the main reception usually is and pop them in a box,they are then collected with the rest that arrive from the surgery. ?????? I will end there,but just one example of the keystone cops approach between the primary and secondary care system.
Yes it is your Scottish upbringing! I’m Scottish and I do exactly the same thing🤪. ... and as to the GP vs Consultant conundrum... it’s endemic isn’t it? I’ve had to run in circles (Metaphorically obviously😂) a few times trying to coordinate requested blood tests in time for appointments etc. A proper ‘joined up system’ would be a wonderful thing indeed🙄
Editing- before I posted this I hadn’t read Yorkieme’s post or thread😱 ... my little ‘runarounds’ sure pale into insignificance when compared with that story - horrendous!!!! It is terrifying when you think that people who are less erudite or capable have to navigate their way through the broken ‘system’ - and it’s been going on for a very long time. I remember in the late 80s/early 90s the Royal infirmary in Edinburgh lost my aunt’s medical notes - On 3 separate Occasions!!!! Resulting in several missed appointments - a huge amount of running around by my cousins and my mother - I was working away at the time- and my aunt’s health deteriorating drastically during that time. I still believe it contributed to her needlessly early demise....
Yorkieme....do you feel a virtual hug? You should~! Couldn't you just scream....I want to be in the middle of a pasture yelling cuss word after cuss word. On top of not feeling great it is just emotionally exhausting to run down all these rabbit holes. HUG~! (()) xo
Thank you for your lovely reply and yes I do feel the hugs from all of you,those are the hugs that allow me to stand back and thank my lucky stars I can post on here and come away feeling better and slightly wiser.
You are certainly not a klutz~! Be kind to you~!! On my Google calendar each Tuesday it says....TCZ-L or R so I will know what leg to put it in. Now...do you think I still mess it up...you bet! xo OH WELL~!!💖
I bet you never wasted a whole syringe of the drug. I just watched it fountain helplessly. Never mind, it’s out of the way I won’t do it again. I make a good contrast with the brisk efficiency of yorkieme. 😂😘
But you can hardly be blamed for a faulty EpiPen. The fact that they changed without a big hoohaa indicates that it's not such an in usual fault. You are not a clutz 🌸
You are made so aware of how expensive this drug is and then I squirt it everywhere. Yes, she was very understanding. Thanks Hollyseden. Not low, just accident prone. 😧😘
I take liquid prednisolone that comes in 5mg vials. I was worried because when I was on 12mgs per day I would have two vials and then 2 mgs out of a third vial. I told my GP that I was worried about the waste and he blessed me for thinking about the nhs but he said it was a drop in the ocean compared to lots of other stuff. Well, a drop in the ocean every single day mounts up doesn’t it?
Well, if they made all tablets without lactose there wouldn’t be a problem. Life is so much easier these days thanks to Arla who make milk, cheese and butter all without lactose. I am so enjoying cheddar cheese again.
Apart from the Cheddar you'd love it here - everything comes in a lactose-free version. Very common here. Most well aged cheese is lactose-free - the joy of a nice chunk of Parmesan!
Me? Italy - in the Dolomites. These intolerance things are common - coeliac and lactose intolerance mean good selections of options in even the smallest of supermarkets and cooks in restaurants are usually well-informed too and willing to provide a special portion.
My youngest daughter was prescribed growth hormone treatment when she was 6. Very strict guidelines to qualify for it, price I think was definitely one of the reasons for this. I remember the nightmare of daily injections, we even had a nurse visit on Christmas Eve and day, Boxing Day and New Year's Day to give her her injections until she got used to them, then I did it until an EpiPen came along. Grateful to get it and really grateful for NHS. 9 years of injections would have been a shocking bill 😨
My youngest son, now 51, was nurtured through puberty with growth hormone injections too. He reached 5'9" which is about the average male height in my family. The most important thing was that had he not had them he never would have been able to father children....his development would have remained about a 10 year old...per Chicago Children's Hospital.
Yes I remember taking my daughter for scans to check if she was 'maturing' as she should have been. A mum of 2 now so all well 😊 She started treatment when she was 6 and 9 years of daily injections later, she was signed off as a success. Always the smallest in her class but she felt with it fine. Glad your son had same result.
💖 I have two grandchildren also~!! Viva la Chicago Children's Memorial Hospital, Endocronology !! xo
Hollyseden, I wanted to add...my admiration and acknowledgement to what it must have been like for you and your daughter those years. My son Jeff only received an injection every other week for about two years...a cakewalk compared to you and your daughter's journey.
She took it like a trooper. She wanted to grow like her friends and a wee daily jag did that for her. At least it wasn't diabetes which would have been much harder to control and was one of the things they tested her for. We did get a bit fed up with hospital checkups but cheap price to pay 😊💪
So happy to hear about your son’s successful treatment.
I was just being grateful for not having to pay ( apart from income tax) for all the expensive tests and medications I have had in the last year, thanks to the NHS in the U.K. or to take out medical insurance.
Oh...yes, Jane, I hear you. Since my husband of wow! now 36 years are legally separated, I only have to pay $50 per month as part of his retirement health plan....or my goose would be financially cooked. The Actemra, runs about $1800 per injection in the US. In January I only had to pay $8.95 and from then on -0-. Ah, beautiful zero ...although if I had a choice......................................................xo
I’m having to chase appointments too. I was told by appointments to get an expedite letter from my GP, not sure if they do that where you are, it means the consultant has to look at my referral much sooner. Anyway it is what it is and if you had real concerns it’s straight to ER.
Re your little place, it happens and good job you found out now. Something else will come up out of the blue be sure even though it’s not that easy choosing from afar.
I chose our house via FaceTime as my son and grandchildren were driving back from showing me a ‘perfect house’ that I didn’t like for us.
This one I put an offer in before I’d been to visit - you just know and I have no regrets. Somethings are meant to be - or not! Happy house hunting.
Hope you get your eye appointment brought forward. I ring them up daily for cancellations when in need.
Put 'how to get rid of mould' or 'mildew' etc in your house. It can be dealt with successfully and in some cases naturally (in other words) not using chemicals. Worth a shot⁉️⁉️⁉️
Hi...not in this case, I doubt it. There was mold, mould, in the attic wood and in the basement, cellar, ceiling. The little house is about 80 years old...so who knows what is in the walls. I think it is best to keep looking in this case. I lovely little cottage would do~!! xo
Wow, I now understand................keep looking something will turn up with a bit of luck and a fair wind. I am keeping everything crossed, except my eyes, never could cross them. 😉😉
Keep your hopes alive Grammy 80 and look for the rainbows. They are sometimes hard to find when everything seems difficult. I’m holding tight to hopes and rainbows today. Jen.
I totally agree. It is hard going to chase medical appointments and pharmacies etc. I have had to initiate a shared care agreement between the hospital and GP and chase prescriptions and physio appointments. However, I have been very fortunate that I have an excellent neuroopthamologist who coordinated my care whilst waiting for the rheumatologist to become involved. I now email my rheumatologist to update him on my progress and to check on my regular blood test results. He then replies with any changes in my medication regime. I am also having my first physio telephone consultation this coming week.
I hope your neuroopthamology appointment goes well. Sorry you have waited so long for this to happen.
I am sure you will find the perfect home and wish you every happiness. X
I am so sorry to read what a rough time you are having. I hope you soon find your forever home with a medical team as good as mine. I feel so blessed. My doctor understands PMR. My consultant saw me last week. I had x-rays taken same day and I have bone scans next week and and see an opthamologist Sept 1.
I live in an old mining community with 3 medical practises and when we moved here chose the best. other I know, at different practices seem to have to keep chasing, as you do.
Sorry about living arrangement not working. Big disappointment, as was good solution for you. Sure you’ll find another, but oh, going through the process. Just like dr appointments. Have had to deal with them too. Just when we’ve checked off that box, it’s back at the top of the list. 😒. 🤗 to you.
I'm trying to let others worry about it...they are looking for another little place~in the meantime I will go to Boston and see what happens there. Thanks, xo
As a Maine resident, I heartily agree one needs to be a super advocate to keep things moving to the right people at the right time...Even with a MD VIP , which is an extra cost above regular insurance, I constantly need to follow up...As a nurse, this is so unacceptable.
Quite honestly, I've found one has to be a 'super advocate' for yourself no matter where you live and it doesn't really matter if we are overseeing communications between various specialists or their orders to the pharmacies....to keep things moving.
I was on my way to the Mayo Clinc for a hip revision back in 2017 and with research found the surgeon rated 8th in the country was available in Falmouth and operated at Maine Med in Portland.
If I am perplexed, which I am at this time, I hit the city whether it is Boston, Chicago or the Mayo Clinic (who with no exaggeration saved my very life in 1985). All of that is the result of checking and double checking as you well know as a nurse. There were two occasions when I was to be receiving 1000 mg Pred IV....I was only given 100.
I feel this forum is one of the greatest sources of information I have found and I'm sure you would agree since you are another US citizen....hanging out here in England. These folks are the best. If I was younger I'd pick some 'key' brains and start a similar source in the US.
What is MD VIP??? I pay $20 no matter where I go with my regular health insurance, I'm curious.
We all have to stay on our toes all the time. I wish you the very best.😉
The MDVIP is a service I pay for in addition to my regular insurance...It is out of Florida.
You are guaranteed to see your Dr.within 24 hours and can call 24/7 to be in touch with him/her. They are all on their own and not part of a group practice...they limit the number of clients/patients they see. There are only a few in Southern Maine and I had to call at 2am and 15 min later, she was on the phone to me...A wonderful service...I woul dnot be without it. Would you share the Dr. name as I live in Fal. part time and have one knee done and another creakey one now. Thanks so much. MJM
I'll gladly share~My surgeon was Dr. Brian McGrory who specializes in hips. The practice is Maine Medical Partners, Orthopedic Division, 5 Bucknam Road, Falmouth. There is a surgeon there who does nothing but knees. All surgery is done at Maine Med in Portland.
Prior to my surgery, hip revision after almost 20 years, they even included my family in Canada in the seminars via computer. It gave them great insight into when to best help.
The world is small indeed....I know during a meeting there many spoke of one surgeon who specialized in knees, and I don't recall the name!😏😏 That was my second surgery on that hip and Dr. McGrory was fantastic~! My rehab was at the Cedars in Portland and they were wonderful.(Only because they had to cut the femur)
From your description of MDVIP it sound like what is sometimes referred to as boutique medicine....?? I may be wrong. I believe it was an annual fee of $3-4000?? Truly, because my scripts and injections are so expensive by the end of January my out-of-pocket expenses dwindle and I've found my physicians to be available...even if I have to be Inspector Cluseau!! Based on an individual's personal needs, it is wonderful that the option is available. I'm happy that it has filled your needs....and that you have such a wonderful surgeon~!!k🦵🏻🦵🏻
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Rheumatology appointments
Sore ear 
Shimmering patches in the eyes
Finally getting there!
rheumy appointment pt 2
