Thursday, July 07, 2016

Thursday-noon-disability journey

Good Afternoon!
I am tickled that the ground squirrels seem to love drinking from the saucer.
Not that I could catch them in the act--LOL! 
We had some storms.
Too humid to have the place open much.  But when I do--Karma waits for CatTV to begin shortly after I change the water and put out some food. 
The ground squirrels are around often these days. 
Even though they are are favorites... 
...have you ever been so tired... 
...that you just doze off watching TV? 
Until something loud happens to startle you awake (like noisy black birds flying overheard). 
You resume the program... 
...but find yourself nodding off again?
Hey!  I was watching that! 
Leah had brought over some boiled lentil penne noodles that she didn't care for to see if I would like them.  I didn't care for them, either.  So I chopped them up and laid them out on a baking sheet to dry a little overnight and thought I'd see if the critters would like them.
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I put them out along with a few of the sunflower chips.
The blackbirds ate around them... 
...so did the sparrows. 
Not even our Little Buddies would eat them. 
So I took a broom and dust pan out there later and swept them up--LOL!
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We briefly had new patio visitors this morning!  The pair of grouse stopped by. 
But not even the grouse could rouse Miss Karma from her comfortable position in the sun. 
Do you think Karma's gotten used to her CatTV nature shows?  LOL!  Trust me, she pays closer attention when it's nice enough to open the patio door.  It's not that hot out today but the humidity is 76%.   Supposed to rain this afternoon.
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Anyways, I have a confession to make.  Or more of a shocking realization I couldn't ignore or excuse away as to how truly bad off I have been this past year with the move.  Totally freaked me out, to be honest.
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When I saw the pictures of Ian's birthday party I had no clue who the little one in the high chair was.  I figured out it must be Leah's sister's baby--but had no recollection of ever having been told they had a second child!  Zero.  
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Granted, Leah is a very quiet, close-to-the-chest kind of girl and I rarely hear that much about their lives...but Leah swears she told me about Elliott and even showed me pictures!  He was born in September...when I was struggling to unpack and had reached a point of needing lots of help from Dagan and Leah to do so.  Total brain fog.
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That level of brain fog--no retention whatsoever--has happened to me before.  But I didn't think it had this time with this move.  I wonder what else has been lost to me?
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When I had been working the two jobs at Lee Square in Minneapolis and ended up with mono (1999)--that was the first time my brain just didn't work for me anymore.  No retention.  You can be so exhausted that you can not think anymore.  I could read something over and over again and not remember one word of what I read.  If I sat down and didn't move for more than about 20 seconds I would doze off.  Sometimes I thought I was asleep with my eyes open.  My doctor wanted to put me in the hospital, but I had no insurance coverage.  
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My boss refused to give me time off and I couldn't live there if I quit the day job in the office because the night emergency personnel job was only in exchange for the apartment--no income.  So--long story short--that is why I ended up moving to Fargo-Moorhead (without Workman's Comp's permission) to go to college...which I started while recovering from the mono.
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My brain cleared, but I was never really well again.  I caught everything that went around at school.  The kids at Concordia knew that if they needed over-the-counter medication or tissues that I carried supplies with me.  [Well, they also knew they could come to me if they needed a pen (choice of colored inks and types of pens), paper, stapler, highlighter (choice of colors), paper clip, safety pin, scissors...you name it...just like when I was in high school--LOL!]  
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But my general health continued to decline.  By the second year I couldn't work my part time job anymore.  By the third year at Concordia I had to drop down to three classes a semester instead of four (which was all that was allowed before you'd lose funding).  College was becoming more and more of a struggle because of exhaustion, pain, IBS, and the returning brain fog.  I even got tested to see if I had mono again--nope.  (Didn't really surprise me as I didn't have body pain or IBS when I had mono.)
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By my third year at Concordia, even with reduced classes, I had to drop a class first semester.  So, I started to look into switching to the public college where I could take two classes a semester and get funding because I was sinking fast and Concordia would have to kick me out, anyways.
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So, in what would have been my senior year, I switched over to MSUM (Minnesota State University Moorhead).  I tried everything to not miss classes...to persevere.  All afternoon classes, classes only three days a week...professors even gave me extensions and allowed me to have more absences than officially allowed (because I had good grades)...other students volunteered to share class notes and contact me to let me know what happened in classes.  Regardless, I didn't manage to complete all four classes.  
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When summer vacation started I finally went in to the doctor.  I told him I was sure I was dying of something.  Nobody could be in that much pain all over their body and be mono-tired without them dying of something.  I had tests all summer long.  Finally he called me in to give me the diagnosis.  He told me--"The good news is--you're not dying.  The bad news is--you're still going to feel like you are."  (He knew me and my sense of humor well by that time.)  Told me--"You have fibromyalgia."  "Huh?  What the heck is that?  I watch Oprah.  Never heard of it."
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I was very fortunate to happen to go to a doctor who 1) heard of fibro and 2) believed it was real.  I had friends and family who didn't accept it or believe it was a real thing for a long time.  Heck--I struggled with acceptance for a long time, myself.  I was used to just pushing through anything and everything--mind over matter, you know?  But that doesn't work with fibro.  You pay dearly for it...even just slightly pushing the many limitations you already know you have.  
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Anyways, I had had several people telling me to apply for disability.  So I finally did that.  And I got a lawyer, as everyone told me was the best way to go (although he turned out to be almost useless because I wasn't going to amount to much money for him).  He did file.  I was rejected.  He filed again.  I was rejected (he didn't even remember who I was outside the courtroom and hadn't read any of the documentation I had sent him).  He filed again.
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Meanwhile I was making a valiant attempt to tackle a second year of part-time college at MSUM...which I hadn't been able to pull off the first year and I was in even worse shape, so it didn't look promising. My school funding was my only income all those years since I had moved up here--well, ever since I couldn't even manage one day a week for 4 hours anymore after the very first year.  The money I got twice a year had to last me for the entire year--rent, etc.  I had moved up here with mono and no job--had to file bankruptcy and give back my car, too.  I had to get help with rent from Federal Housing and get an EBT card (groceries).  If I quit--I had no income at all--would lose my apartment--had no money TO move and no where to go TO.  No money to even put my belongings in storage so I could crash on Dagan and Leah's couch.  I had all-encompassing pain and it was a struggle to keep my eyes open...plus I couldn't remember anything for two seconds.  That was the second time my brain just wasn't working for me.  I used to wake up and just lay in bed and cry.  I didn't know how I was going to survive the day.  Even just a day at home doing homework was totally overwhelming.
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    What I decided to do on my own was see a free counselor (I'd fall asleep in the waiting room and then cry in front of her for an hour--insisting I was only situationally depressed, which was true) and I made an appointment for a Functional Capacity Test.  I knew I needed proof by medical professionals for the third disability decision/rejection.
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The Functional Capacity Test is a 2-day affair.  You are supposed to go two days in a row and they do all these simple tests.  Well, they sure looked simple to me.  Before we started, I filled out forms that asked me what I thought I could do.  I remember I thought--well, most of this isn't gong to help me at all.  I can do all of this--except for the bum arm stuff, of course.  (You guys know that I do suffer from undying, unrelenting optimism.)
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  OMG!  It was awful!  Yet it only entailed things like standing for 20 minutes, carrying things, climbing up and down a stepladder, walking a balance beam, doing small motor skill stuff (fine with my right hand and only thing I did well--until I was so shaky later in the day), and I can't even remember what all else.  By the time I had to do the walking of a long hallway...she insisted she push me TO the long hallway in a wheelchair...and I was struggling not to cry.  I kept apologizing.  Kept telling her that if I only had to do one of these things in a day for a short period of time that I could do them--honest!  Like climbing up and down a stepladder, for goodness sakes.  But after doing stuff all day long--I couldn't.  No strength left.  No balance left.  Couldn't even walk very far at all down the long hallway.  She stopped me...and made me get back in the wheelchair.  I was mortified.  And I was truly, deeply, shocked at how bad off I was.
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It was winter and I had to bring shorter pants with to wear so they could check your knees and ankles for swelling and such.  By the time she let me go home...I couldn't even change to my long pants...and I was pain-crying.  I drove home shivering in my capris.  Hurt so badly to drive--to press on the pedals, to turn the steering wheel...and the tears made it harder to see.  Pain-crying (what I call it) is when you have tears flowing down your cheeks and you aren't even aware that you are crying.  It's just an involuntary reaction to the knife-pain and exhaustion.  
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I made it back to my apartment, collapsed on the couch, and later discovered when I had to pee that my knees and ankles were so swollen and I was so weak that I couldn't walk.  I had to sit on the floor and kind of scoot backwards on my butt to the bathroom.  Dagan and Leah came over (shocked at my condition, I think) and brought me food...for days.  It took me a week before I could go back to do the second day of the testing!  She didn't push me as hard the second time.  Or let me push myself as hard, to be honest.  (I aim to please, you know.)  She was a sweet girl.  She emphatically pointed out the vast discrepancy between what I "thought" I could do and what I actually could do.    
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 I'm better at it, but I still tend to regularly overestimate.  ;)
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Meanwhile, back at the ranch...
I am ashamed to admit this, but I wasn't able to complete one class--either semester--that last year.  Not with extra time and help from classmates...just could not physically do it.  I could barely manage daily maintenance of myself, to be honest.  I had to quit school.  I was losing my apartment when my pre-paid rent ran out.  Had no money to move.  No income.  Couldn't work.  I had been in for the third court date for disability and never heard anything (but had turned in the functional capacity test results).  Nobody wants to end up a burden to other people.  Can you say situational depression?
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    I remember having one of those handing it over moments.  I tried everything I could possibly think of.  I was beaten.  If I was meant to be homeless and a burden, so be it.  Somehow things always turn out for the best--even if it is not the way we expected.  Maybe it was going to be good for my soul to be homeless?  Anyways, I handed it all over to my guardian angel.  I trust him with my soul.
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Within two weeks I was accepted for disability, got a back payment so that I had money to move, and found a low income apartment in the middle of winter!  It was a horrendous move--shyster movers who tried to get more money from me (I refused), moved like snails, broke lots of stuff, took all day & night (even took a 2 hour dinner break with half my stuff in the truck and tried to charge me for their time).  They took me to court and lost, BTW.  :)  But, I digress.
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I was in such terrible shape after that move (11 years ago Feb) that I could barely walk and refused to even have anyone come and help me unpack for a week.  They had just made my bed and hooked up the TV in the bedroom and put up the shower curtain.  I wasn't up to even overseeing unpacking.  I ate dry cereal and toast--and spent the week in bed.  Dagan and Leah brought me other food regularly.  Barely remember that move any more than the move up here with mono--LOL!
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Which brings me to this move.
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I truly believed that I was in a lot better shape and had done a lot better--which I did do better physically, but I was still in worse shape than I even realized!  And the exhaustion part...I totally underestimated.  When I said a while back that it felt like the fog was lifting--that was quite literal.  I know at times I felt like I did when I was in college...at the end.  I knew I had trouble reading sometimes--retention.  But not remembering Elliott--well, I was worse off than I cared to admit to myself--again.  That is proof of how bad the brain fog really was.  How weak and exhausted and in pain I was.  My brain wasn't always working for me...again.
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So, I apologize for all my boring, repetitive blog posts, emails, and letters over this past year.  Those of you who have stuck with me--you have been with me at my worst.  Bless you, patient people.  Until recently I have been strictly on maintenance.  I know I have mentioned not being able to remake the bed for a week at a time...having to work up to making soup, doing laundry...and sometimes it was just to take a shower.  It wasn't that long ago I couldn't untwist a Powerade cap--even with a gripper--and Leah opened up all the rest of the bottles for me when she was here. 
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So, I am not only confessing to you but admitting to myself that I have been a lot worse off than I even thought.  I feel so badly that I didn't remember Elliott was even on this earth for nine months.  Not that I ever see them...or anyone, really, except McFamily and Caroline.  But, obviously and without a doubt, the brain wasn't working at all sometimes this past year.  No retention--again.  I honestly didn't think I was as bad as that.  Shades of the Functional Capacity Test!  Not many spoons--sometimes none and borrowing against the next day.  All my spoons were focused on the move until I was unpacked.  I'm kind of foggy about the family visit last year in October, too--that same morning was the last of the unpacking.  After that I kind of collapsed--on all levels.
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I am getting better.  Slow process, but the fogginess has lifted a lot.  I haven't been sick in a while (knock on wood).  The pain level is a bit lower.  And I still say--no better place to be laid up.  I dearly love the new apartment, as you know.  Karma and I have been so friggin' happy here--would go through it all again in a heartbeat.  I am blessed to have Dagan and Leah in my life looking out for me.  And Ian is just the frosting on the cake.  ;)  
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One of the ground squirrels is out licking oatmeal dust off the cement.  Sparrows are pecking at it, too.  Karma is asleep in the chair next to me.  After I post this I am going to go binge watch seasons five and six of Game of Thrones.  Life is good.  Thank you to every one of you patient souls who come by to visit the blog, send an email, or write precious snailmail.  I am hoping to be a little more worth your time in the coming months.  :) :)
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     "Adopt the pace of nature: her secret is patience."
Ralph Waldo Emerson

26 comments:

  1. Wow, you have suffered so much. I am happy for you and Karma now, to see you happy and settled.
    All these hidden diseases are so awful.
    Carol x

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  2. Holy smokes Rita. Words can't express the emotions I went through reading this post! You have faced so much adversity and you keep your sense of humor and your general sense of hope and well-being. I am continually amazed by your strength and courage. You give us all encouragement to keep fighting the good fight! I consider myself blessed to have found you as a friend.

    xoxo
    -andi

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    1. Andi, Rita is the best. She's absolutely hilarious in spite of everything.

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  3. Well you are getting older...that may account for not remembering something:) Karma TV is looking good:)

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  4. Maybe you didn't remember Elliot because he's a boring baby. Don't tell Leah I said that. About ten years ago I saw one of my sisters with a picture of a baby. I said, Who's that? She said, It's our nephew. I said, Man, that's one ugly baby. She probably told everyone about it. I wouldn't recognize a lot of my family members if they came to my front door--not that I'd go to the door anyway. I never cease to be amazed by all the people who say, Well you look fine. Tell our bodies we're fine, and we'll see what our joints say to us. I get up on a step stool once a day to get something from a cabinet and that's it. I'm done. Or I push a piece of furniture a tiny bit so Mrs. Roomba can get the collection of dog hair that's gathered, and I ache all over. Why do people think they can tell us how we feel?

    Love,
    Janie

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  5. This was a really long post! I am glad you are getting better and thrilled that you have such a fine place to be, you and Karma, with the help of McFamily you are truly blessed now. And you ARE getting better. :-)

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  6. I've noticed no fogginess in our communication. So it's not been any effort to grown our friendship, which I find extremely supportive. Again, so happy the move happened and you and Karma like your new digs :) Take care.

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  7. When even hungry birds won't eat boiled lentil penne noodles you know they are bad!!

    Your life's journey has been quite a trip. Don't beat yourself up over Elliot. Out of sight, out of mind...

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  8. 1. I am TOTALLY exhausted after reading this.
    2. Don't feel bad about not remembering Elliott; he probably doesn't remember you, either.
    3. You don't remember things that happened. I remember things that NEVER happened.
    4. Take care--feel better--don't push yourself--I love you!!

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  9. As I read your post I had tears in my eyes. I know your pain... I am fortunate that I seem to have less pain than you on most days but are others days that I have crawled to the bathroom and then just sat there til my legs went numb trying to get the energy to crawl back to bed. It hasn't been that bad in a very long time and I am very thankful! I wonder how you are doing often and would write but I seem to have lost your snail mail address :( Take care and hopefully things will get better soon.

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  10. Rita, your tragic story is heartbreaking and completely overwhelming, but I'm so glad you wrote about it and gave us insight into what you've been through. Progress is always slow and tedious - but I truly pray that bright things are on the horizon for you.
    I have heard of fibromyalgia, but don't know much about it.

    I love the photos of Karma. She has a lot of interesting things to watch on her "live nature" TV screen!

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  11. You are always worth the time, Rita. I always enjoy reading your posts. Your creativity always inspires me. What is even more inspiring is that you are able to do so much despite the challenges that you are facing. Thank you for being honest and letting us all know what you are struggling with. You are a beacon of encouragement to those who likewise have invisible (and not so invisible) struggles. Take good care of yourself...and continue posting when you feel up to it. It's always interesting to read about what's happening in your corner of the world!

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  12. It was good to read about the problems you have had in the past and the tests I had no idea existed. I hope you are on the road to recovery and of course, you are always quite optimistic in your outlook.

    Thanks so much for dropping by while I was offline. You are a gem!

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  13. It sounds like you've had such a trying journey!

    I got a kick out of your photos but have had to look up "ground squirrel" as we don't have them here. I hope you have a good day today

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  14. Oh my how you suffered this made me feel sad for you, and movers not a lot I have had any dealings with because we have always moved ourselves, ok only moved once from the flat Tim and I had when we were first married to this place in May 1988. However our daughters have moved a number of times and each time have done it themselves. Also the tv looks like it could fall at any moment, just saying

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  15. you don't have a thing to apologize to us for. you share your life and your joys, here, all the time. i cannot imagine how hard your days are sometimes. you are strong-willed and faith-filled. and bless leah and dagan. :)

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  16. You've certainly had a tough road, Rita, that's for sure. (((Hugs))) I know about a lot of the hardships you mentioned and I seriously don't know how you coped through it all. Your resilience is commendable. Mind you, it's like no matter what, sometimes we just have to keep rolling with the punches because there are no other options.

    Don't feel too bad about forgetting Elliot...I can have foggy brain issues like that. My short term memory has become terrible as I've aged. I read recently where it was explained that our short term memories are converted to long term memories when we sleep. I figure that if, short term memory is fleeting, then a particular memory may have passed out of our heads before it's had a chance to be converted to long term memory....hope that makes sense.

    Of course, illness and chaos do effect our memory chain too. I have been dreadfully sick this past week and I'm still getting over it but, even now, my brain is so foggy. I can't think straight half the time.

    It's awesome that you have Dagan and Leah so close and that they are so supportive and helpful. Take all the time you need to get back on your feet and know that your posts are never boring. By the way, I enjoyed the pics too.

    Love and hugs to you, dear friend. xo

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  17. With all that you have encountered, you inspire me. Thank you...

    And the photos of Karma watching the ground squirrel make my morning :)

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  18. Take your time - take it easy - and I hope you feel better soon.

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  19. You are a survivor ~ be gentle with yourself ~ 'stroll through the day' ~ you are doing well and have good company and support and Karma is a wonderful companion ~ plus all your creativity ~ Sending you lots of healing hugs ~ xox

    Happy Week to you ~ ^_^

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  20. Who knew birds and critters would like noodles!

    Hang in there. You'll get better. Hugs!

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  21. Rita, you write so honestly of your disability and your life. I know it must be a difficult thing to do and a more difficult life than people suspect. My daughter has MS. Like your experience, for quite some time people just didn't "get it". She looked fine on the outside and appeared to be a slacker to some. People can be pretty judgemental about health conditions that aren't obvious like open wounds. I admire you spirit very much.

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  22. Wow Rita, you have been through a lot. Thank you for sharing your story. You will be in my prayers. Be easy on yourself. It is so nice that you have family nearby. Regards to Karma and McFamily. Take care and God bless.

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  23. You've written such a heartfelt post Rita, it's so inspiring to hear that you are in a better place, both physically and mentally. I hope you keep improving and you and Karma can enjoy life to the max.
    I'm so happy to hear about your saucer being such a success.
    Cat TV can take it out of a pussytat!
    Take care and please just relax and know that we're all here xoxo

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  24. I can hardly imagine the problems with struggling through all that for years on end. What a patient and persevering person you must be, and a wise one too. I always enjoy your posts - and don't apologise for anything! *hugs*

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Just a note: I don't pass on awards or do tags, and I no longer comment on blogs that have word verification (see top right hand corner of my blog). So if you haven't heard from me that's probably why. Sorry.

I read and appreciate each and every comment, but it became too overwhelming to personally respond to each one like I used to here in the blog comment section. I will answer questions and communicate via email, though, if you have an email address listed on blogger and I do try to respond to every comment.

Have a really great day! Karma says hi! :) :)