Hands ... more important than you realise ...

Anything on your mind that isn't about RLS? It's nice to realize that there is life beyond this disease and have an opportunity to get to know our online family in a different context.
sardsy75
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Joined: Thu Mar 18, 2004 8:56 am
Location: Queensland, Australia

Hands ... more important than you realise ...

Post by sardsy75 »

I'm trying not to have an "oh woe is me" moment, but I dunno how this is going to turn out ...

I consider myself having a pretty "tough shell" when it comes to most things in life.

I dont have a circle of friends that I meet up with once a week for coffee and a chinwag. When you spend the better half of your life exploring the inards of various hospitals, friends dont exactly queue up to join you on the tour.

I've been right to the brink of death ... only to be turned away by St Peter at the Pearly Gates. Apparently he thought it would be a good idea for me to turn up to my own wedding, not my own funeral.

Ok ... the moans and groans about my hand injury have already been well documented here (somewhere down the bottom of the page) and here .

After nearly six weeks of ultra-sound, TENS treatment (trancutaneous electrical nerve stimulation), massage, stretches, playing with therapeutic putty and elastic bands, and using half-kilo hand weights ... I'm a nervous, frustrated, terrified, pain-wracked wreck.

The area that was operated on has healed perfectly.

Two weeks ago my physio requested that I return to the Hospital (where I got the inital run-around and not much done) to request a bone scan (NOT a bone density scan).

So, I toddled off to the public hospital, with Troy in tow as back-up. To say that the doctor who treated me all those months ago was surprised to see me again would be the understatement of the new year lol. He was not too happy to find out that despite surgery, the saga was not yet over. Unfortunately, due to federal legislation he was unable to request the bone scan.

He enquired if I was seeing the private surgeon for a follow-up visit, and when I said it was Monday Jan 14th, he breathed a sigh of relief. While I was there he did do another round of x-rays and the only real problem he could see was a nice case of osteoperosis setting in due to the lack of use for so many months.

Picked up a copy of my x-rays this arvo and dropped in to the physio's office on the off chance of snaffling him between patients. Didn't have to wait long. To the amusement of other patients in the reception/waiting room, he and I had a good discusion and gander at my latest pretty pics and both came to the same conclusion ... we have no idea what the F*** is goin on!

In a normal x-ray, bones appear to be a bright white colour. In my left hand I have dark shadows and even black patches on the bones around my thumb and the area of my wrist below my thumb. Not good! Then to add to my worries he said "hmmmm ... tendons aren't supposed to show up on x-rays. I can see yours as clear as a bell. It's like its solidifying for some reason." YIKES!!!

My physio's completely baffled.

I'm a right royal wreck and my emotions are all over the place to the point that the slightest pain in my left hand/wrist, or the thought of the next specialist visit, or the thought of how this one little thing seems to have taken over my life and my career, has me in tears.

For a laugh I tried on the plaster cast that I'd had on my arm prior to my surgery. It had been cut in half so I could start some physio treatment before my date with the surgeon. To my horror, it was a perfect fit ... actually not quite perfect as I had to force the two halves together to tape them together. It was an eye-opener for Troy who'd been saying that he didn't think my hand and arm looked all that swollen. Oh well!

I'm trying to keep a brave face, but I'm failing miserably. I was brought up with the "when you walk out the front door, or you get visitors, you put a smile on your face no matter what" command. That command sucks!

What has really upset me though is an incident that happended just after Christmas. I sent a text message to my sister one night asking if our parents were still at her place (in Canberra) or if they were travelling again. She sent a text back telling me where they were and I replied that I would ring them in the morning, could she let them know. No problem so far.

I slept in the next morning and was woken by my mobile phone ringing in my ear (i'd left it on the bedside table). It was my mother. In summary, the conversation went a little like this:
1. Dont bother your sister with trivial text messages
2. I'm calling from our mobile phone so i'll have to keep this short to save money
3. Dont doctor shop or you'll get a bad reputation
4. Everyone has to put up with and live with a little pain in their lives.

NOT quite the conversation I was hoping for. I was calling my mum and dad because I needed their advice and help. The only way I could find out where they were was to contact my sister (my olds usually have their mobile turned off and they dont know how to use txt msgs). I'm getting tired of driving a nearly 3 hour round trip to see my Gatekeeper up in Rocky who's getting tired of writing prescriptions for codeine because he doesnt want his name on "the list". I was in terrible pain with my hand; and to top it all off, I'd been bitten by a spider when we went out to set crab-pots the weekend before and I ended up at the ER two days after Christmas, unable to walk properly, swollen groin glands and a nice big disgusting "thing" (about 5in in diameter) on the back of my leg. I just wanted my mum and dad!!! Instead I got a lecture, a cursory drop-in visit for about an hour on their way home (they drove from Rockhampton to Canberra and back via Brisbane) and another lecture before they left. Oh yeah, the lectures were from mum. If I'd had the chance I would've taken my dad aside and burst into tears on his shoulder.

So I'm bawling my eyes out and pouring my heart out to people I love so much who live so far away.

### taking short break to go and find a box of tissues ###

I've even scored numerous lectures about how dangerous "these sites" can be. For F***'s sake ... i'm 32 ... not 15 and full of outta-control hormones! You can imagine what it was like when Troy and I had to explain where we met ...

I'm terrified about going to the doc on monday. The physio has also suggested cortisone injections, which I know hurt like hell ... my pain threshold used to be pretty good ... it's taken a beating though. I'm terrified that the doc is going to say that he can't tell what's going on from all the x-rays and scans and the only way to find out is to do more surgery!

Ahh ... i'm a right mess! Emotionally and physically! I hate it!

Troy has a pretty good idea of what i'm going through. He had his achillies tendon severed about 7 years ago and he went through numerous surgeries, a hell of a lot of pain, and just as much physio. He was working as a glazier and a sheet of reinforced safety glass shattered while he was loading it onto a truck.

I'm so glad I found him. He's put up with some pretty nasty stuff with my health, yet we're still together, stronger. Yes, he's coming to see the doc with me on monday. The girls probably will too, since they're on summer vacation for another 2 weeks (4 down, 2 to go!). They're hangin out til the day I can play with them again. Do the fun stuff outside with them and the dogs.

Zena, our Rottweiler, has become my new "baby" (although Fidget will always be in my heart). She's four. Her favourite game is to jam her head inbetween the back doorpost and the person going in or out the door and forcing her way inside. She looks for me first then the girls. Trying to get her outside is another task in itself. Today she planted her butt at the laundry door which meant, whilst gripping her collar with my good hand, I had to physically nudge and slide her towards the backdoor. The girls thought it was a hysterical sight! I placated her undignified exit with a few bones to chew through.

I think I've out-typed the length of concentration of most readers ... sorry!! To those who've waded through it all and come out alive ... thanks for the loan of your eyes.

Ruby ... You commented about how I remembered you liking being an Aussie's Mate. My mate, I never forget wonderful things like that. We were a fledgling group and were fending off some pretty nasty characters back then. It was a priviledge to welcome you to the group and a privilidge to defend you as my friend (along with everyone else i've shoved two feet in my mouth for :wink: ).

Time for me to try and soak my worries and fears away in a nice warm shower. It's been raining a lot and the temp is nowhere near the searing heat we usually get at this time of year ... it's actually cool enough to need a light jacket at night ... and its mid-summer! The rain is welcomed though. So much of our country has been in drought, even the areas that have been declared disaster areas because of floods, are happy! The underground water tables are being replenished, the levels of almost empty dams are rising. The only problem with the rain? It means fishing is off the to-do list!

Well, Troy has just noticed that i'm still typing away and asked if I was writing a 10,000 word essay. So I think that's my cue to shuddup and go have a good cry in the shower.

Until next time ...

Love ... hugs ... sweet dreams ... soft moonbeams ... and positive thoughts to all ...
Last edited by sardsy75 on Wed Jan 30, 2008 11:07 am, edited 3 times in total.
Nadia

My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!

Sojourner
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Post by Sojourner »

S75, I am so sorry and saddened by the challenge that has been placed in you way. Sucks is my true sentiment! I hope your upcoming visit will be the best yet and that some sort of solution or excellent treatment plan will be reached. Do you have the equivalent of "Mayo Clinic" diagnostic center that would be an option? I'm also sorry for the painful words expressed by some who truly don't understand what you are going through. But, it's glad you have Troy to balance out those insensitive comments. You are strong, courageous and one of out dominant spirits.

"What the caterpillar calls the end of the world, the master calls a butterfly."
~ Richard Bach


My warmest wishes for a better tomorrow.

M>
This post simply reflects opinion. Quantities are limited while supplies last. Some assembly required.

SquirmingSusan
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Post by SquirmingSusan »

Nadia, so sorry that you are having such a rough time of things right now. And double sorry that your parents aren't able to be comforting to you. Sadly parents who have never been able to comfort us, don't often change and become able to meet our emotional needs. They have their own issues, so we need to learn to care for our own inner "hurt child." It sounds like Troy is very understanding and loving, though. I'm glad you have him.

I wish you the best with your hand. I hope you and the doctors get it figured out soon and come up with a treatment plan that works. Just try not to assume that because things are bad right now, and that you are in a lot of pain, that things will always be this way.

Take care of yourself! Have a good cry and then give yourself a hug. Sending healing thoughts and prayers your way...
Susan

KBear
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Post by KBear »

Perhaps you will get some answers when you see the surgeon on Monday, don't forget to bring the x-rays with you. Please keep us posted on how it goes. I will keep you in my prayers.

Susan thanks for saying this:

SquirmingSusan wrote:Sadly parents who have never been able to comfort us, don't often change and become able to meet our emotional needs. They have their own issues, so we need to learn to care for our own inner "hurt child."


I've always known this to be true but it helps to have someone else confirm it. Fortunately we can also find comfort and support from others who are not our parents.
Kathy

Link to the Mayo Clinic Algorithm:

http://www.mayoclinicproceedings.com/pd ... 907Crc.pdf

becat
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Post by becat »

Nadia you typed with one bad hand, I'll type with the shakes! LOL So forgiveness in advance for bad spelling and grammar.

I won't lie, those injections hurt like all get out! I had 2 years worth, the max amount each year after breaking my leg, so long ago, now. The foot doc I was seeing was tops in his field, trains and tests all that pass through our system in TX.....how knew then cortisone does nothing for raging RLS. :? But, in your case it might be helpful, even if just to take some of the swelling down so that they really can find the problem.

I totally understand you just needing you Mum and Dad to hold onto. It's been such a long uphill battle for you. I know some of the history about Mum, but Dad I believe will open his heart and hold you dear. Do what is needed to get to him, you need that shoulder and you need his love. There is nothing wrong in that. It's not inmature, your not being a baby, it's normal to want your parents when life kicks you so hard. Get to him Nadia! Just make that part happen, he'll support you and provide the shoulder needed.
Just call and put on that happy voice and ask your Mum for your Dad. Ask him to walk away, as you need his advice and need to talk to him. It will work. Dads just want the best for us, so just do it.

Honey I have a mother that rocks this world, my world. She is smart, wise beyond what life could teach someone, and hates medications and doctors. I love her with all my heart, I'd likely do anyhting she asked of me. However, we do not discuss my RLS or most any other ill anymore. I have gotten the same speech and it bites. So your not alone in the speech of the century my dear, even those that love us don't always know how hard chronic pain can be. Empathize, but not really understanding the heart of what it takes to try and be a normal person.

I had one of my Local best friends tell me last year, amist all my health problems, "we just want the fun Lynne back!" Honestly, I do more than she could ever know, but I also know that it's a battle for so many of us.

I know your scared about your hand, the money, Troy and the girls....how will it all work out? I think your right in thinking that at the moment, but you have to remember that today is only one day, tomorrow the same. Troy has proven his love and care, as I believe the girls have also, so don't worry about them. The girls just need to understand , from you that it is what it is for now, but that life is not always one day at a time. People get better and your pulling yourself in that path or direction.

We always fear the unknown, but we can change the scope of the picture, the amount we let it get to us. Some days we're down and it seems that every minute is the longest minute in the world.......but in reality it is not.

Your are strong, you are worthy, you have joy in your life. You will live it to it's fullest. Remeber reading in the park you loved so much, find that place when this hand ordeal is overwhelming. Sit in your mind in that park.

I'd fly to you , just as you would for me. Nadia, this is what I have learned this week.......I hope it helps you in some way.

It is what is the hardest that changes our lives, molds the ways our eyes see things, but our hearts never stop searching for the dreams we hold dear. It's just another step in our lives, my dear. One that changes us, yes, but one that will make us stronger.
You might not have thought you'd be in the position, but you are now. And after this mess is over, a new you will be born. No, maybe not who you thought you'd be, but it will be you. The stronger you that made it through all of that which will be behind you. And a you still worthy as ever.

Hugs and a moon full of my prayers and thoughts of healing for you. Stand strong girlfriend, it's all doable. All of it. We'll row for a while, you know so. Just get to working on making them (those docs) do their job right, you have a life to get on with.

:)

Lynne

Walking After Midnight
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Post by Walking After Midnight »

Nadia, have you tried soaking your hand in epsom salts?

That's my mom's cure for everything and since your mum didn't give you the help you needed, I thought I'd lend you my mum. So...soak the hand, get your room picked up, don't talk like that in my house and I hope you have clean underwear on.

Seriously Nadia I feel so bad for you. It's hard to get to know all of you and to see you going through so much bad stuff. I hope you get some good help and comfort.

By the way, you've got a great face.

God Bless you for sure...
Randy

ViewsAskew
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Post by ViewsAskew »

I can hear the concern and worry in your post. Not knowing, not being able to make sense of it....those are so darn hard unless you're Bodhisattva material. I don't know about you, but I'm not sure I can spell it*, let alone practice all that gets you to it.

My mom is a great mom. But, she's not the type to go to when you need mothering. Yeah, we have a few issues, but mostly we get along great. I just better not go there crying about anything. So, I totally get the how you must have felt. Like Lynne, I've learned not to ask, but every once in awhile, I still want it! A few months ago we were on vacation together and I started to go there...and just the look on her face reminded me to shut up before I made myself feel bad.

Give Troy a kiss from me. I'd say a hug, too, but that's probably too hard to do. The kiss (on the cheek, of course), is for taking such good care of you.

Hang in there, and as others have already said, keep us apprised.

* I didn't spell it right, but thank goodness for iespell, the program that resides on my Internet Explorer toolbar and resolves most of my mistakes before I hit submit, lol. When I remember to run it, that is :roll:
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

jan3213
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Post by jan3213 »

Aww, Nadia.... I'm so sorry you are going through so much--pain, worry, and problems with your parents. I wish you had the support from them that you want and need. But, I am so glad you found Troy and his girls!

Lynne had some good ideas regarding the parent situation. It does seem like I remember you having a better relationship with your dad. Sometimes, moms and daughters just have a rough time. My mom was.....not easy, either. So, I think I understand. Of course, I'm the perfect mom. hahaha Just ask MY girls. Wait a sec...no, don't! haha

WAM's idea of soaking our hand in Epsom Salts is a good one, as well. That really does help.

Please let us know how you are. I know it must be terrible trying to type with your hand in pain. Hang in there. Again, as Lynne said, you are a very strong person. We go a long way back and I've seen you get through some bad things, Nadia.

I'll be thinking about you, my Aussie friend!

Love
Jan
No one is alone who had friends.

Polar Bear
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Post by Polar Bear »

Nadia, I am so sorry you are not finding what you need with your folks. Yeah, my mum was difficult also, my dad was a darling (drank too much ... but that's another story). I could never have gone to her, but realised in later years that it was her own insecurites that made her sharp, sarcastic etc. etc. She and I fought, argued and all was quite difficult. After I left home and After my dad died, and she came to rely on me a bit more, she mellowed, and became my friend. I looked after her at the end and when she needed care (alzeimers) , she went into a nursing home only 5 minutes walk from my home.

However, that's my tale, and it doesn't make it any easier for when times are tough and you don't have a mum's shoulder to lean on. I agree, get hold of dad, daughter's are usually special with dads.

Neco
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Post by Neco »

I hope you find out what's wrong..

Sorry to hear about your folks.. Sometimes I just don't understand other peoples' parents at all.. If it were me I would have likely have snapped and put them in their proverbial place.. But my folks aren't like that I guess, my dad comes from the whole "do what's right at any cost" generation I guess; I suppose that's why I'm 25 and live with them and not under a bridge.

Sometimes folks can be so insensitive to others tho, it should be studied by science (probably has been).

I hope you find out what's going on soon, I'd be freaked out if I had these kinds of problems. Just be strong, and don't give an inch to anyone is all I can say.. It's your life and not theirs, after all..

ctravel12
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Post by ctravel12 »

Nadia I am so sorry for you are going through. I have read everyone's post to you and gave you some excellent advise. I am so glad that you have Troy to back you up at anytime.

If you feel the need to cry go ahead and cry and know that we will be here for you.

My mom was always my backup power and that I was very happy for . Both of my parents have since then passed away but I still talk to them. It may sound silly but it makes me feel a little more secure. Of course, my hubby is always there for me. If your dad is the stronger one then please get ahold of him and have a good talk with them. Hang in there it will get better.
Charlene
Taking one day at a time

sardsy75
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Post by sardsy75 »

Ummm ... A very humble and huge thankyou to everyone who replied to my post ... I've been such a nervous wreck for the entire weekend that every time I read the new posts I'd be a blubbering mess.

And i'm on the verge of tears again now ...

Well, y'all wanted to know what happened at the hospital today ... so here goes ...

Saw Dr G at 2pm this arvo.

He's happy with the way the ligament has healed and the recovery progress.

He's NOT happy with the new situation which has reared its ugly head.

He was VERY impressed with my physio being so on the ball in detecting that all is NOT ok and appreciated that he had taken the time out to write a letter to Dr G outlining his concerns.

Dr G did some basic movement tests and, like my physio (and everyone else who's wanted to see if my thumb would move like a joystick), learnt very quickly where the friendship line ended.

I mentioned that I have hypermobility in both thumbs, little (pinky) fingers and knees and he pounced on that and said it had a LOT to do with how easily those areas and the surrounds can be injured.

I also mentioned the problems i've been having with the ultra-sound treatment at the physio. Dr G was very concerned and very interested to learn that I cannot tolerate it being done with just the gel as it feels as though a knife is being shoved straight through my wrist. When I said that even having it done by using a water bath sometimes hurts like hell, he had a rather worried look on his face.

He had a good look at the xrays that were done last week and agreed with the osteoperosis diagnosis.

My physio mentioned two possible investigation routes in his letter: cortisone and a bone scan.

Dr G doesn't want to use cortisone straight up (wahoo!!!) as he prefers to use it when he knows what he's treating ... and at the moment ... he has no idea what's going on and is just as baffled as we are. As for the bone scan, Dr G said that although they're good, MRI's have come a long way and give a better picture of what is going on. So, I'll be having another MRI in the very near future. The request went through while we were at the Hospital and now it's just a matter of waiting for the Medical Imaging place to ring and tell me when my appointment is. At least it will be a lot LESS painful procedure this time ... i hope!

We've agreed on a process of elimination. Carpel Tunnel has been completely ruled out. Dr G is concerned that there is something going wrong with the tendons within the entire hand and wrist area and also worried about something going on around the scaphoid bone. He's refusing to point a finger at any condition in particular at the moment.

So, I'm back in a splint, only this time is a combined thumb and wrist splint, which goes halfway up my arm (very attractive ... not!) and has to be worn 24/7 (just when I was starting to get used to how my left arm and hand looked!) The surgical supply place where I purchased the splint asked if I had private health cover and when I said yes, they said I should be able to get some of the cost back. So, I put the claim in. So far I haven't had any phone calls to query the claim so with a bit of luck I should get something back tomorrow.

Dr G was NOT happy with the level of pain i'm in and enquired what pain relief I'm using. The topical NSAID had pretty much no effect from day dot. I've also been using Nurofen Plus (ibuprofen 500mg/codeine 12.8mg)during the day and Panadeine Forte (paracetamol 500mg/codeine 30mg)at night (despite the fact that it's used for my RLS as well) but I pointed out that if i had to take extra Panadeine Forte I'm getting to the stage where I might as well supply a signed statutory declaration of "how many and when" for the Dr. So he's prescribed Moxicam, an oral NSAID to try and help ease the pain and hopefully some of the swelling. I tried on my old fibreglass cast the other day ... it didn't fit ... my arm was too swollen!

So, in summary, I'm back in a permanent splint. I'm waiting for Rocky CQMI to ring with an MRI appointment. I'm on an oral NSAID to assist with the pain and swelling. Further surgery has NOT been ruled out. Having a full hand and arm fibreglass or plaster cast for goodness knows how long (it'd be months) has also NOT been ruled out. Dr G likes the process of elimination ... so I guess I'm going to be one of his more interesting patients for the next few months. Somewhere in the middle of all that we have to find a way to get to Brisbane to see my Sleep Doc, who I was meant to see last September. Oh ... and finding some work would be good too.

That's about all my muddled brain can handle at the moment.

I promise I will post again in response to everyone who sent me good luck, good wishes, hugs and everything else ... I received them all and it was wonderful.

Goodnite for now
Nadia

My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!

ViewsAskew
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Post by ViewsAskew »

Sounds like you are in the hands (no pun intended) of the right doc. Thorough, cautious, but willing to listen and take action.

While that part must feel great, surely the rest does not. I'll be waiting to hear of the MRI results and further developments with fingers crossed.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

sardsy75
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Post by sardsy75 »

I gotta stop makin promises about posting ... I'm terrible at keepin them lately. :oops:

Saw my dear physio on Wednesday and we discussed the surgery that I had done on my right wrist back in 1999. We started wondering if what happened with that wrist is what might happening in the other now.

I took a gamble and rang Rocky Mater. They still had my records and were quite happy to fax the surgeons notes from the op through to my physio. All fingers and toes crossed that it might help discover what the current problem is on the other side.

Got a call from the Medical Imaging people a couple of hours ago. My MRI is scheduled for 9:30am on Tuesday (22nd). I'm glad that I dont have to wait too long; still petrified about what the hell is going so damn wrong.

When I go back to see the Surgeon, I'll be taking the 99 op notes with me as well.

"Fragile" is probably the best way to describe my state of mind at the moment. The tiniest thing can send me into a flood of tears. I have no job, I have not a cent to my name. But I DO have a wonderfully loving partner and equally wonderful stepdaughters ... and of course, this ever-faithful family here.

The only good thing about my health right now ... my RLS is actually taking some time off and behaving! At least something is goin right!

Will let you all know the outcome of the MRI and subsequent physio and surgeon visits. Any extra crossed fingers/toes and whatever else you'd like to hurl my way would be very gratefully received. I'm S.N.A.F.U. right now but by next week everything could be well and truly F.U.B.A.R.

Love n hugs
Nadia

My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!

ctravel12
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Post by ctravel12 »

Hi Nadia keeping my fingers and toes and whatever else crossed for your mri next week. Please keep us posted on what is going on. It is great that you have the support ofa wonderful and loving partner along with youor stepdaughters. That is a definite plus. I am also glad that your rls is doing better and will continue to do so.

Take care as there will be a light at the end of the tunnel. We are all here for you.
Charlene
Taking one day at a time

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