Been downhill but hoping to head back up! 4-17-15 Susan's Soul Shines Blog Post

[SusansSoulShines]

4-17 Friday Flowers Special; Blog Site Goes Over 200 in 4-15, Online Almost A Year – Thank You All So Much!! | Soul Shine Creations By Susan

The above is the link for my current post from Friday, which I'll be shortening some, and the post has a special request if you'd please take a quick look at it IF you use my posts or read them at all, that is. I appreciate you taking a quick minute to help me out since I'm at a sort of a turning point with the site.

I mentioned recently that I've been having a lot of medical testing done, and I got overwhelmed by it and getting behind on things, not able to do all I wanted to and had to so since my pain makes me move slow as it is. My husband really picks up the load for me when I can't function well, he's too good to me! I've been having a lot of new health problems with my Pulmonary / Circulatory system, including severe edema so bad I could only wear 2 pairs of adjustable shoes and that's been a long time problem for me since having pre-eclampsia during my 1st pregnancy almost 40 yrs ago, I had extreme leg heaviness from the knees down and they looked sunburned on those days. I had even more muscle spasms than normal that I thought was just Fibro acting up, and I was losing too much sleep. I was able to just stop both of my inhalers as of last week, yayyy, but my oxygen level was getting too low during sleep and caused sleep apnea.

My husband was alarmed by my appearing to not be breathing or moving during sleep, and he kept at me to have it checked out. I avoided sleeping at times but would also at times not be able to sleep & often stayed up for 2 days with no sleep. That is NOT good for you! I got a CPAP machine that is not oxygen like I thought, thankfully it's just air to make you restart breathing right away when you stop, and to prevent it from happening.

In 2 nights of using it my moderate apnea went from stopping breathing 20 X per hour down to 6 one night and 4 the second night! So to avoid a possible heart attack when the heart beats too fast to restart breathing, I'll be wearing the mask and letting the machine help me get better in other ways too. I had no idea those little machines could even possibly help in so many things, I'm hoping to at least get some relief from the new problems that have piled up. The Fibro and osteoA pain make lying down painful and I'd be thrilled of my pain threshold could be stronger.

Enough about my miseries, have a great weekend and my blog post explains about the posts getting shorter to be more like most you see, so no big thing really but it will save me hours each week and I can still put out some good content! Thx for your constant support, we're all here for each other and that is a wonderful part of this group!!

[Pixieglitter]

Susan, I'm so sorry you're having a such hard time with your fibro. I've recently had mild heaviness in my lower legs from when I've been on my feet a lot during that day. It was miserable for me even though it's nothing like you're dealing with. I didn't know you were having to use a walker. My gosh. I'm so glad you've got your sweet hubby to help you!!!

I've been having a hard time opening up your site. It's not you or the site! It's my internet service. I only have DSL because it's all that's available for me, living out in the country. I swear sometimes I have to stand on one foot and cross one eye to get my internet to work LOL. It's so frustrating.

Hang in there girl, and I hope you're feeling good today!

Hugs,
Shelley

[SusansSoulShines]

Susan, I'm so sorry you're having a such hard time with your fibro. I've recently had mild heaviness in my lower legs from when I've been on my feet a lot during that day. It was miserable for me even though it's nothing like you're dealing with. I didn't know you were having to use a walker. My gosh. I'm so glad you've got your sweet hubby to help you!!!

I've been having a hard time opening up your site. It's not you or the site! It's my internet service. I only have DSL because it's all that's available for me, living out in the country. I swear sometimes I have to stand on one foot and cross one eye to get my internet to work LOL. It's so frustrating.

Hang in there girl, and I hope you're feeling good today!

Hugs,
Shelley

Hi Shelley, yeah, slow internet is for the birds! I used my walker,m it has a seat and wheels, full time last year inside the home and out from July till Nov, then only out of the home here long walks with nothing to hold on are. That at least is an improvement. I thought Fibro was the worst pain that existed until the osteoA. got so bad. Like I told meerkat, with 3 hours of sleep last night I can barely walk today, so I have to try to sleep better. The past 2 nights were 8 hrs and 7 hrs, so that was great, just had a bad night with pain last night. One day at a time, right?! love susan

[Susan2014]

Susan my goodness friend Pain and etc is really testing you. Try to sleep is hard as I try to listen to soft music & that helps a little. Energy, lazy is the word I use to say (others Mo etc did so I thought I was NOT ! As my edgyness is from not being able to go out garden, down basement take a short walk. My Legs, hand, back. What I do is Smile, Laugh and nap or get up and do some chore. like to see things done?? Mine is so minor comparing as I do to you and others (wont name) I caregive & want a smile, tease a little BUT he does'nt know Im in such pain. larry is slowly getting tired, does'nt do much so I pick up slack. Im pleased to do as God knows Larry allways did most things. Sorry for a speech. Susan did you forget your misery's for a second?? Reading my message??? Love 'N' Prayers Susan2014

[SusansSoulShines]

Susan my goodness friend Pain and etc is really testing you. Try to sleep is hard as I try to listen to soft music & that helps a little. Energy, lazy is the word I use to say (others Mo etc did so I thought I was NOT ! As my edgyness is from not being able to go out garden, down basement take a short walk. My Legs, hand, back. What I do is Smile, Laugh and nap or get up and do some chore. like to see things done?? Mine is so minor comparing as I do to you and others (wont name) I caregive & want a smile, tease a little BUT he does'nt know Im in such pain. larry is slowly getting tired, does'nt do much so I pick up slack. Im pleased to do as God knows Larry allways did most things. Sorry for a speech. Susan did you forget your misery's for a second?? Reading my message??? Love 'N' Prayers Susan2014

Yes, thx for taking my mind off of my miseries and onto yours, I hope you get better too. Not being able to do things we want makes us fidgety, and we're going to a funeral tomorrow of all fun things but I want to be there for my friend Caregiving is hard, pain is just rough all around, thank you for caring, we'll all pray for each other!!! love susan

[SusansSoulShines]

Susan my goodness friend Pain and etc is really testing you. Try to sleep is hard as I try to listen to soft music & that helps a little. Energy, lazy is the word I use to say (others Mo etc did so I thought I was NOT ! As my edgyness is from not being able to go out garden, down basement take a short walk. My Legs, hand, back. What I do is Smile, Laugh and nap or get up and do some chore. like to see things done?? Mine is so minor comparing as I do to you and others (wont name) I caregive & want a smile, tease a little BUT he does'nt know Im in such pain. larry is slowly getting tired, does'nt do much so I pick up slack. Im pleased to do as God knows Larry allways did most things. Sorry for a speech. Susan did you forget your misery's for a second?? Reading my message??? Love 'N' Prayers Susan2014

Yes, I forgot my misery reading your note, lol, it's not too long, not at all! I get fidgety sometimes and clean house or something physical no matter how bad it hurts, you have to move! I'm just careful with my leg that got hurt last year, it may never be right again, and lying on it, there was already no way to be comfortable, now it's even harder. I'm trying to comply with the percentage of hours per night wearing my CPAP so my ins will pay for it, I'm right at the correct number, 70%, but I changed masks and had a head cold so I couldn't wear the old mask being so stuffy that night. That made my percentage fall a little, but so far it seems like I"ll be achieving my goal of 70%. The machine itself is like 1,300.00 or so, not sure exactly without looking, and that's not counting monthly supplies, but I def need my ins to pay for it! I love my new mask, and the swelling in my ankles has gone down a lot since I've been wearing it for almost 3 weeks, yayyy! So that means it's helping my pulmonary system like we'd hoped it would. At least a few new symptoms seem to be being affected.

I'm slowly relaxing and working on my Road Trip Scarf, and am going to post yesterday's blog post on here tonight. Thx for the encouragement, I wish you some as well. I know that tasking care of your husband is hard, so many are in that position and it's so draining, I remember poor meerkat and how hard life was on her for so long. It's not a secret, she told about it on here and then she had to move, and I think is moving again I think. Lots of us have disease and misery, but we hang in there, crochet bringing us together to support and encourage - that's what I love most about my blogsite and this group!
Thx for the sweet words Susan2014!!

[SusansSoulShines]

Susan, I'm so sorry you're having a such hard time with your fibro. I've recently had mild heaviness in my lower legs from when I've been on my feet a lot during that day. It was miserable for me even though it's nothing like you're dealing with. I didn't know you were having to use a walker. My gosh. I'm so glad you've got your sweet hubby to help you!!!

I've been having a hard time opening up your site. It's not you or the site! It's my internet service. I only have DSL because it's all that's available for me, living out in the country. I swear sometimes I have to stand on one foot and cross one eye to get my internet to work LOL. It's so frustrating.

Hang in there girl, and I hope you're feeling good today!

Hugs,
Shelley

Thx so much Shelley, my CPAP is possibly helping my Pulmonary problems, so that's good, and my sleep has been pretty good, but it does take a while to get it all going to work for you, and it's only been 3 weeks. I wish it would help everything else I have, but any relief is a good thing. I rarely use the walker now, only if I have to walk a really long distance an there's no cart to hold or any place to sit, but my right leg just hurts too bad to walk on very far. I don't think it is ever going to get like it once was. I'm working on it all tho!

[MeerKat]

I am so sorry, I hope you get to feeling better. Glad your sleep apnea is getting under control. I know sever people that have to use those mask things, they said they were uncomfortable. But better than the alternitive.
God Bless

[SusansSoulShines]

I am so sorry, I hope you get to feeling better. Glad your sleep apnea is getting under control. I know sever people that have to use those mask things, they said they were uncomfortable. But better than the alternitive.
God Bless

Hi meerkat, and thank you. My mask isn't uncomfortable at all, but the pain and lack of sleep is! My pain threshold lowers when I don't sleep, like last night only 3 hours and I wake up in so much pain I can't walk. Tonight I make my self lie down and crochet in bed, then turn the light off after a while. When I don't sleep, everything is worse. I would suck the dirt off of rocks in my yard to get relief, lol, so a little mask is nothing!

[sonnetta]

Susan, so sorry to hear about all that you are going through and I pray you will get better soon. I have edema as well and there are times my legs swell up like balloons. I am on lasix for them. I know how pain can affect sleep. I am in pain 24 hours a day and I know I wake up quite often at night because it hurts roll over. I also have sleep apnea. They are planning on doing another sleep study sometime. My new doctor wants to get the records from my last test several years ago first then we will go from there after he sees what it says.