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| Lake Superior Beach |
Over the long weekend (Victoria Day), my friend J and I went for a retreat an hour and a half south of here. It's a little motel right on Lake Superior. It's nice for a nature loving sickie because there is very good access to the beach and a creek. Also, the place is dog friendly and we can get a suite with a little kitchen.
Today I'm quite crashed, although I was fairly crashed most the trip too. But I'm having trouble walking or even standing today from the weakness and lightheadedness. For example, I tried to make a cup of tea, but had to sit while doing it. It's been a bed-bound day for sure.
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| Saskatoon Berries in Bloom |
My folks are coming to visit this weekend for a week and to be honest, I'm not sure if I have it in me to entertain them - even just around home. I've been so much sicker the last two years, and even socializing can be draining and beyond my abilities at times. My housemates will hopefully help out a little.
I'm reading "How to be Sick" by Toni Bernhard in an attempt to deal with some of the day to day thoughts and emotions of being sick. So far I'm really enjoying it. I think it will be helpful for me in the coping arena.
I saw my specialist via Telehealth in mid-May too. It was a mixed appointment. Even after years and years I get my hopes up each time, thinking she may have "something" that will help me feel better. We discussed anti-viral and immune drugs, but really, there is nothing I haven't tried in that realm that would be covered. I've taken Famvir (severe nausea), Acyclovir, and Valtrex. We discussed Imunovir but I would have to pay a lot for it (and have no money) and she hasn't seen any success with it in her patients.
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| Nearby Creek |
I have a heart test coming up, but we didn't get into the OI issues. She was frustrated that the lab refused to do the test with me lying down, then standing up (echocardiogram). I also have an abdominal CT scan coming up ordered by the Gastroenterologist (who I refuse to see again). However, she said to go ahead with it as the results will be sent to my clinic and I could just review them there.
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| The view from bed |
It was so nice to have my NP sitting in on the appointment. The two best medical allies I have together in one space (via camera). One thing they discussed was next time I get the throat blisters, my NP will swab them and send them away for viral testing (Dr. B gave her a list of tests). It would be nice to know why I have these 50% of the time even if they aren't treatable. Also, I am going to be self-administering B12. I'm going to be shown the procedure on Friday and thereafter will pumping myself full of that particular vitamin for a while to see if it helps at all with energy.
So glad you were able to get out upnorth and soak in nature. I used to love going to Lake Superior and just sit by it. Water is healing I think. I have been resting flat as I went for a second walk on Mon. just a few minutes, like under 5 and crashed before I got back to the house. Could not sit up yesterday, but fortunately am already a bit better. I spent yesterday praying and actually fasting and laying and slept good alst night, but I do think my body is recovering much faster which is a good sign. I pray the same for you upnorth. Hope your time with your family brings you lots of joy!
ReplyDeleteI remember that you would sometime go to lake Superior. There is something so magical and healing about this lake for me. Oh, and I'm sorry you crashed so hard out of the blue. It is such strange feeling that weak crashy fatigue isn't it. I was having trouble walking even around the motel esp. Sat. and I was thinking even 10 years in it sometimes floors me how weak and shaky I am.
DeleteGlad you were able to get away over the long weekend, Upnorth. Beautiful photos and I loved seeing them! I hope all goes ok when your parents visit.
ReplyDeleteThanks at home on the Rock, I'm guessing spring is arriving there too.
DeleteYour photos are breathtaking! Really, that first one just made me gasp. It looks like a lovely, relaxing place, and I;m so glad you were able to get away.
ReplyDeleteImunovir has helped me a LOT, and it is helping my son also. My insurance covers it at 70% as out-of-network, so it isn't very expensive (though I do have to mess around with submitting claims after the fact). I think it is worth a try...especially with your throat symptoms which are obviously a sign of immune system reaction. Even if there are underlying infections, the Imunovir will help your own body to better respond to them. Just my two cents :)
I hope you find How To Be Sick helpful - I thought it was excellent and often recommend it. Peace of mind is one of the few things we can actually control!
I totally understand about your parents' visit. I find having people here really exhausting, even if they help out around the house. its the socializing - amazing how much it can tire us out. try to work in bits of quiet, private time for yourself while they are there. That helps.
Thanks for sharing your beautiful photos!
Sue
Oh Sue, I really wish I could try the Imunovir...but they won't cover it (I'm on social assistance disability) and there's no way I can pay for it. My specialist is wonderful but seems wary about treatments for OI too which is frustrating right now. But she's my only medical ally with any real knowledge of M.E. ....other experiences with any Dr. here have been to dismiss me all together so I'll just have to chip away at this stuff for now issue by issue.
DeleteHi Upnorth, I might of messed up, have to start this again. Just ignore the first comment if it went through. Well, I really should respond more often as I read your blog whenever a new one is up. Makes me feel so NOT alone with this illness. I give up trying to explain to anyone about how I can only minimally socialize whereas people do understand becoming exhausted from physical exertion (well, not really, they think I get just tired, but at least they think they understand).
ReplyDeleteTalking at length is impossible, the phone is very difficult outside of family and skyping is horrible.
I'm hoping so that the B-12 shots help you, let us know.
Meanwhile I don't know what I'd do without my Kindle and SiriusXM radio (I listen over my computer). Passing the time laying down is so difficult, time moves so slowly. Netflix helps too.
Thankyou for the beautiful photos. I especially love 'nearby creek' with you dog. I didn't see your dog at first, that was a fun surprise. Well, good luck with your parents visiting, how terrible that we can't even get all bubbly and excited and give big hello's and raise our voices with big hello's.
Thanks again for all your blogging work
Leah
Leah, thanks for letting me know that you enjoy reading my blog....I want it to make a difference, even if just a few other sufferers feel they are not alone. Heehee re Kindle, I have a Kobo and use it all the time....those little things make a difference.
Deleteupnorth,
ReplyDeletethe photos are breathtaking! like paintings. the window view one looks like one of famous painting of a surrealist artist (forgot name).
hope you feel better from crash and good luck with test.
btw, thanks for commenting on my blog:-)
Yun Yi, I dont' know why it took me so long to join your blog....sometimes I mean to do something for a long while before it actually happens.
Delete