Wednesday, April 21, 2010

Which Ribbon Should I Wear Today, Or What Do I Wish To Dare/Wishcast Wednesday

I've often read and supported other's wishes that they cast on Wednesday's, following Jamie's lead, but never felt comfortable sharing that much of my inner self with the world.  Or perhaps I didn't have the time to dig within myself to find the answers. It was easier to use my blog time as an escape from everything that is going on around me.  I honestly think that it has been a combination of the two. The second one was a legitimate and easy reason for not putting myself out there to feel so vulnerable.

But the time for that has ended. I laughed to myself when I read Jamie's Wishcast for today. "What Do I Wish To Dare". . oooooh, that is SO tempting. There are so many things that I could fill in there, from the relatively benign, to the grand challenging of the Fates. Do I really want to go there? Sometimes, I feel SO angry, I do. But then reason reigns me in, to be thankful for what I do have. That is the problem. I am SO thankful, I don't want to lose it.  And I'm forever wishing, all of the time, that everything will be better. It is that hope that inspires me, and the basic premise that I am needed, that keeps me going.

I haven't posted here for a while, and I think that it is time to explain why because it may be more sporadic in the future too.  I'm hoping that things will level out, but one can never really determine these things, can they?

I've also been hunting around for a nice "100 followers" give-away, and in the interim, have lost 2, so I no longer have that milestone.  I don't blame them for leaving. It has gotten rather boring here, but as soon as I get my things together, I'm still going to have that drawing for those that are patient enough to hang around. .and look at it this way. .the more that leave, the greater chance you have of winning!

Now for a little history. The dancing around is over. My darling Hubs has been fighting advanced prostate cancer for 12 years now. We travel back and forth to the Mayo Clinic in Rochester, MN every 3 months for his treatment. He will be on drug therapy for the rest of his life. And each time that the cancer has spread, they have had a new treatment ready to use, to put it back in its place. He is one of what they are calling a new breed of cancer patients, that are living a relatively normal life with cancer. We have learned to accept this way of close monitoring and treatment as our way of life. Most certainly not what we envisioned, but we, like most people would, have adapted.

So last summer, when I finally convinced Hubs to have a sleep apnea test, because he would quit breathing several times a night, I never dreamed as to where that would lead.  After staying overnight in their sleep clinic, so they could monitor not only his breathing, but oxygen levels in his blood, brain activity, etc. they sent him home with a CPAP machine. He wears a mask every night that forces moist air into his airway, keeping it open, allowing him to inhale and exhale normally.

His apnea was so extreme that they also made appointments for him to see a neurologist, who then scheduled a number of scans and tests, including a 4 hour long memory test.  They also interviewed me a few times, and then we got the news that Hubs has a form of dementia. Not Alzheimer's they assured us, but Lewy Body. I've been reading up on it, and have to say, that I'm reserving judgement on that diagnosis. Unless they saw something that they aren't telling me now, most of the symptoms that set it apart from other dementia's simply aren't there. Yet. But we will see what develops. I'm not sticking my head in the sand. He does have both short and long term memory problems that at times are worse than others, and he is getting more confused.  The mind is a beautiful, but strange instrument. It is heart breaking for me to see him sitting discussing the intricacies of astrophysics with the doctor, but then stammer and stumble when trying to search for a simple word to describe how a food tastes, or when he can't remember 5 words that they gave him to remember not even 5 minutes prior.

I think that this diagnosis is more difficult to determine too, by the fact that my Hubs has Adult Aspergers too. Fortunately, he is rated on the high end of the Highly Functional scale, but took years of dealing with the emotional highs and lows before he was diagnosed and it was brought under better control. We are very fortunate for that. But his social skills still suffer, I think that sometimes that is misinterpreted.  I have to laugh though. I've acted as a buffer for so many years for Hubs, stepping in and clairifying, or going through the social nicities to cover up for his faux pas which could hurt someone's feelings (and he would be equally hurt to find that out later), but wouldn't recognize it at the time, that I have to work hard not to answer things for him when they are testing him. LOL

When he was through with the testing, someone came to ask us if we would consider taking part in a long term study they are doing evaluating a lot of different people with normal memories, all the way, including Alzheimer's patients, and everyone inbetween.  He said that if it would help someone else, then he would glady take part. It made me so proud of him. But I had to agree too. Not only will he have to retake each test every year, but they also interview me.  And this will be beneficial for him, because not only is his neurologist taking part in evaluating the study, but he will have instant access to any changes that may occur.  

Now. .as if that weren't enough, I'm an only child, and therefore, the sole caregiver of my 86 year old Mom, who lives alone, and has some serious life-long emotional problems that are getting worse as she gets older.  And recently, her hypochondria may have caught up with her because her GP saw something abnormal and has sent her to a specialist for further evaluation. So I will be taking her for that appointment as well as others, and we will see where we are headed on that path.

But wait! There's more!!  I got a notice from our insurance carrier that they would no longer pay for the one and only med that I have taken for years. So I had to go to my Dr. to get a new one.  In talking with him, we were talking about my arthritis that I've had off and on since I was in my teens, and one thing led to another, with me telling him how my pain was different.

He did some testing, and set me up with a rheumatologist for this Friday, to confirm or find out what I may have besides Fibromyalgia.   Well, it would be nice to know, and would explain the way that I've been feeling. .the extreme tiredness and fighting depression. .I thought it was just due to the pain, but no.  And get this. .flares can be brought on by stress!! Imagine that!! LOL

I'm not asking for sympathy. Good Energy and Prayers are always welcome and appreciated more than you know, but I simply wanted to let anyone who was wondering, why I haven't been here a lot, and I thought too that if anyone else is going through anything similar, then they wouldn't feel like there were all alone. I've learned through the years that we truly are here to comfort and support one another. I've gotten some wonderful messages from some who already know what we're dealing with. They mean the world to me.

Wow!  I dared to wish that I would be brave enough to write all of this out. To share some personal issues in my life, and I've done it!  Now all I have to do is click on the "publish post" button, then the quivering will commence! I feel like I've been stripped naked, and believe me, it isn't a pretty picture. Someone hand me a robe, please.

Wishing everyone a beautiful day!

13 comments:

  1. We are all here for you darling. . . sometimes revealing yourself is the start of healing . . *Hugs you tightly* You and your family are in my thoughts. Goddess Bless darling.

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  2. As Suzie wishes for herself, I wish for her also!
    Oh my dear friend...you are managing several platters all at once. Stress...that just does not seem to be the right word for it all! You know my life hon and what we share here..I have to tell you I am amazingly proud of you...to Let Fly girl with all of this. You know that your brave spirit saved me hon..I am not sure I would have made it through things without you! I am here for you..know this..I will be a soft place to land if you need it!
    Hugs and love, Sarah

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  3. You are wonderful, brave and amazing! Your sharing shows us your real strength. You don't need a robe unless we can make a trip to a Sedona spa I'd think we should go to! xoxo

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  4. I applaud you for being brave and daring to take the plunge of revelation! Wishing you and your husband all the best -- (((hugs)))

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  5. Suzie,
    You have a lot on your plate right now. You also have to take care of yourself so you can be there for your hubby and mom. Your online friends are always here to lend an ear or eyes :-)

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  6. As Suzie wishes for herself so I wish for her also - and in fact, the beautiful thing is your first official Wishcasting wish has already come true! You have dared!

    Thank you for sharing this bit of your heart, all that's on your plate and in your mind. Know that we are sending you and yours lots of love and support. I'm so glad you're here!

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  7. Such a heartfelt post and thank you for being so brave and daring to share with us. I am so sorry for all that you have to deal with but I firmly believe it takes very special people to be caregivers! Each day is a challenge; some more than others and this to shall pass. We are propmised that. Sending warm hugs and happy thoughts your way and lots and lots of prayers!

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  8. Wowzer Susie, your platter overfloweth right now, I wish there was something I could do to lighten your load sweetie. Sometimes letting it all hang out is a good way of releasing some of that stress. I usually release my stress with a good cry, that's right I'm the cry baby of the bunch but it seems to work wonders for me. I am here for you, to listen, to send gentle hugs, positive energy and if you need a crying partner, I'm the girl to call.

    I can relate to the Fibro and RA. RA runs in my Father's family. My test were negative for RA but they haven't ruled out Fibro yet. I've been going through tests and physical therapy for two years now. I quit my job almost 6 years ago as I couldn't deal with the lack of sleep any more. Now I feel like a medicine cabinet and all any of it does is take the sharp edge off still in pain all of the time, very little sleep and somedays none, it's amazing how you can't do the littlest things, it's awful I know.

    ((Big Hugs))
    Brenda

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  9. As Suzie wishes for herself, I so wish for her also.

    No robe needed here Suzie, you are among friends. Goodness girl, you don't have a lot on a plate, that's a turkey platter! You are a blessing to so many of us, if there is anything that I can do, please let me know! We are here for you!

    (((HUGS)))

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  10. I have been reading your blog for a few months now and you have shown me that you are a spiritual,thoughtful,intelligent,creative and caring woman. These qualities will help you through these difficult times. I wish I was there to lighten you load in some day to day manner. You and your family are in my prayers. Jan

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  11. Well NOW you've done it! You've all made me misty, no down right teary eyed, and I just put my makeup on! *sniffly shy grin*

    I can't fully express what your extremely kind thoughts mean to me. I feel this enormous warmth coming from the vacinity of my heart, and you all put it there. It means the world to me.

    Thank you

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  12. Suzie,
    I'm so sorry to hear of all these difficulties. It makes it overwhelming to have them all at once. I do feel for you in what you're going through. I'm so frustrated with how prostate cancer takes a backseat to every other form of cancer, practically. I do have immediate family and a close friend that are dealing with this. It's encouraging to hear that your DH lives with it and leads his normal life.
    I will pray for your strength and wisdom and all that you have going on.
    ((Hugs))

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  13. OMG! What a strong and amazing woman you are!
    I am sending positive energy and thoughts your way! I'm so glad you wrote this post and I hope that by sharing a part of your life that maybe a tiny bit of the stress you are dealing with was lessened.
    Also, I'm confused as to why I haven't been a follower before this!? Well! I'm correcting THAT right now!
    XOXO - Cindi

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