Hmmm, where to start?
It has been a long and difficult month since I last wrote. I am exhausted emotionally, mentally and physically. Here’s a big thank you to those of you who have expressed your concern and for your offers of help.
I am taking some leave from work and want to focus on taking better care of myself – resting, getting a stable eating and sleeping routine and learning how to cope with life’s stressors.
On the medical front for Beth, one of my priorities for the next few weeks is to get an appointment for Beth in Seattle. I’ve got to put together a copy of all the medical test results I’ve collected over the past two years from various GPs and specialists and send them to the Centre (her GP may have missed a few). We also need to get another series of blood tests and Beth needs to get an EEG on Tuesday. We are trying to collect a little more recent data for the Centre which hopefully will indicate trends in her anaemia and endocrine system.
I received an electronic circular from the Inogen oxygen concentrator manufacturer offering a 30-day free trial for the concentrator. I need to order it before the end of November, which would make going to Seattle in December a feasible option. Hopefully, before the 30 days are up we can find out whether Pacific Blue Cross will let us order from the US manufacturer.
My second medical priority for Beth is to search out a new GP – one who is willing to try treating some of Beth’s conditions. I am hoping our visit to Seattle will result in a treatment plan which will make a GP’s job easier.
At some point Cheryl and I will be posting fundraiser opportunities on this blog. We may even be able to satisfy some Christmas present obligations for you. Please stay tuned.
Sorry, not a very exciting read today. My brain is fried and the words are not eloquent, but it was important to me to give you all an update.
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14 comments:
Linda, thank you for posting. And for talking a little about you, too. You know we worry about you also.
Please feel free to email me directly. Or if you want to call for some reason, email me and we can exchange phone numbers.
The one thing I do need from you, really from Cheryl, is a good idea of when I can schedule a perishable overnight mailing for Cheryl to pick up and deliver, seeing as it turns out that Canada is not open to certain US products being mailed, but is OK with them coming across the border in a picnic basket.
Hi Linda,
Thanks for the update. Glad to hear you're able to take care of yourself somewhat. Good to hear what's going on.
I hope the collation of medical records is not demanding *all* of your leave time - although I know these things can grind like the mills of God... I hope you score the best possible schedule for appointments and so on, as easily as can be done.
I'm dubious about being able to help in any way, but do let me know if you think of something that will be of assistance. It's quite okay to ask.
All the best to you guys.
Thanks Linda, take care.
Thanks for letting us know how things are going, and DO make sure you look after yourself, however hard that is (especially with a partner who really seems to have no idea about relaxing or 'normal' limits!). Hugs
Thanks for the update, Linda. Please try to take care of yourself, 'cause we need you to look after Beth for us. But no pressure there! :)
My beloved and I are thinking positive thoughts for you too, dear lady.
Love and hugs,
Neil
You were as eloquent as you needed to be. I'm hoping you know the meaning of "relax" better than Beth does. I'll be checking in for those opportunities.
Thanks for the update Linda.
And I echo the hopes and wishes for you to get some relax time. As diffiuclt as that is with all that you have to juggle and on your list to do.
Your health and well being is just as important as everything else. Seriously.
Take care.
Linda, you do so much for Beth, but you must make sure you find some time to relax too, or you'll burn out completely. I know from Beth's blog the hard time you're having right now with your bosses - they seem to being totally unreasonable, but then that's bosses for you! Taking care of yourself, healthwise, as well as taking care of Beth... sounds like a job for Wonder Woman, but if anyone can do it, you can. I now Cheryl is there for you both, which must be a great help. I do hope the finances work out for Beth's medical needs, I really can hardly believe that you're having to fund so much of these medical procedures and equipment yourselves. Keep strong.
Love & peace.
I am glad you're taking some leave, Linda. You need and deserve it. I am not rich or wealthy by any stretch of the imagination, but I do have some disposable income. I'll keep an eye on this blog and Screw Bronze for your needs, but please, if you ever need something right away, sandypsych at gmail dot com (spelled out to avoid spam) is my email address and I will always do my best to help. I check that address several times a day, so if you need anything immediately at any time, from grocery money to the email address of a brain surgeon (there's one in the family), feel free to send an email and I'll do what I can.
Linda,
I am glad to hear that you are going to try and take better care of yourself. You need to stay as healthy as possible.
Beth made some mention of some of the things that you might do for some fund raising. If you end up doing Beth's book I want one! Regular ink please, I think that Beth needs all the blood that she can spare.
I am here if you need me.
Love and Hugs,
Laura
Yanub: I'll check with Cheryl and email you with some possible dates. Some customs regulations just don't make sense, do they?
Thea: Gears definitely turning slowly. I hope to get the records sorted before the end of the week.
Defying gravity: Thanks, I do my best.
JaneB: Relaxing is something I still remember how to do. Going beyond normal limits... well, that's debatable.
Neil: Thanks for your well wishes.
Dawn: Thanks. Some days life seems all uphill, you know? Right now I'd love to escape into a book or movie - but have too much to do this evening and I'm determined to get to bed at a reasonable hour.
rachelcreative: You know, since being a caregiver other caregivers or medical professionals or well-intentioned people have told me the same thing - you need to take care of yourself. It's so much easier said than done. I always wonder "How? They just don't understand." Now I'm beginning to see the wisdom. But how to balance everything?
Kate J: We end up paying for a lot of stuff, but it could be so much worse without Pacific Blue Cross. We'd be in so much worse shape without them.
Veralidaine: Thanks for the offer. No brain surgeon required though.
Laura: Definitely regular ink - no writing in blood.
Linda,
Thanks for posting. Xander and I worry about you, too, and we are always glad to see it when you've written.
I have to echo everyone else - do take care of yourself. It is hard to do, but it lets you renew yourself enough to be a good caretaker. It feels selfish & like there is never enough time, but it is incredibly important, especially during a long term illness.
We're here if there's anything we can do.
Thanks for finding the time and energy to post an update - I worry about both of you. Glad you're taking time off to get at least one stressor off the list.
Hi Linda
I can just imagine the amount of patience you must have in dealing with all the stresses in your life. Both with Beth's problems and your own as well as Health and Financial.
I am quickly learning the way that the medical profession works and I already have some stubbed toes and raw feet from running around between them to show for it.
I guess, most doctors are equipped to deal with the normal "oil-change" or "blown-tyre" and "cracked-head" but don't really have any experience or know how beyond that. There is certain condition whereby a car would most likely have been tossed out to the junkyard rather than trying to fix it's chassis.
Life, however, is much more precious than that tho and you can't and absolutely should not, write off a human being because the mechanic doesn't know how or doesn't want to fix the problems.
I am going to echo the other voices and say you have to also be sure to take care of your self. Beth needs you but you can't be there for her if you don't look after your self. But you also exist for more than just Beth.
Keep well, take care of your self and I wish you and Beth all of the best with finding a "good" GP and helping Beth get a better quality of life.
Hugs to you, Beth, Cheryl, Dawn and the whole possy
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