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Sunday, 1/29 Our parish nurse

Sunday, January 29, 2012


The weekend has continued as my past couple of weeks and I sit here with ice all over my neck and shoulder, trying to tolerate our 16 year old daughter who is helping me to purge my clothing of all the "fat clothes." She can be a great helper, but it comes with an element of noise and funny stuff that this mother cannot quite manage. Anyway, I will feel better when these things are sorted and I have better access to what I really want to wear.

We had a great service at church today and it was followed by a "shared meal" (a potluck--my kids commented on the new terminology for an old favorite!) I didn't enjoy it as much as always and I even took a dessert that I gave over half of it away. We always have a potluck before our annual meeting (which is a new name for the Congregational meeting.) This is when we discuss the business of the church, plan projects and approve the budget and so on. It lasted a long time--we finished about 3:00. There were a couple of more 'sensitive items on the agenda that were talked through.

I took a moment and asked our parish nurse to talk with me. I shared my frustrations about this pain and the issues I have been having. She helped me to come up with a couple of ideas--we discussed the issues between the two big hospitals here and how some of my docs are affiliated with one of the other and some with both. I am going to try and play that card a bit and see if my OB/GYN who is affiliated with the "other hospital" might help. I might also try an express care clinic if that doesn't work. We have several connected with either hospital. The problem, it seems , is that orthopedic neurosurgeons are limited around here and are very "special." If I were older, I could have an advocate. If it were cardiology, I could get in today and if it were urology, I could get in tomorrow. I think seeing doctors is far too political.

I am glad that I talked to her--it took her about three minutes to notice that I am in some sort of distress. I cannot hide this from anyone. I am most comfortable if I can rock back and forth and stay moving. I don't quite know why that is a bit soothing, maybe it is the distraction of the movement. Anyway, I'd like to say that I am better, but that is not true. I was up almost all night dealing with this pain. Tomorrow is back to school and I sure need some prayers to help me through another day. I will take one at a time.

Take care of yourself--enjoy every moment!
Gentle hugs,

  Member Comments About This Blog Post:


    You have my prayers, Sylvia. I hope someone will help.

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_LINDA 1/30/2012 1:15AM

    Nothing worse then a specialist in short supply :(( I am already confused trying to understand your system of medical care. In the end though, in spite of all the paperwork hoops, it still sounds faster then ours. But I still can't imagine waiting for treatment in that acute of pain. I think the wheels should be turning a whle lot faster. Bang on what ever doors you can think of to get the attention you need..
I have always found rocking soothing. When my RA was at its worst, I couldn't sleep, but would spend hours in my rocking chair, snuggled in my favorite blanket on a heating pad (to offset the ice packs)
Sending healing, soothing, comforting thoughts.
{{{gentle hugs}}}

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EMRANA 1/29/2012 8:04PM

  I thought I was weird when I was rocking back and forth with my spine pain. Now I see you talking about it ~ what is it with that? Maybe it's just soothing from when we were babies. I don't know! Interesting that you're doing it too.

I hope you get your consult soon. I can't comment on length of time, as I've just returned from nine years in Canada. My wait times there were on the lengthy side. I think it took me eight weeks to get into the orthopedic surgeon who then wouldn't touch me because I was "too young" for a double fusion, and then it took me another nine weeks to get into the neurologist. Eight months for the MRI before I saw either of them. Six weeks to facet injections after I my initial neurology consult. You can sure feel every second of wait time, can't you?

Keeping my fingers crossed that you get some relief soon.

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Friday, 1/27 Absolutely hanging on by a thread!

Friday, January 27, 2012

Hi all,

This is a very quick blog to let you know that the pain that I am dealing with is totally out of control and the slowness in which the medical folks are acting is making me very unhappy. I called my pain doc's office yesterday to find out about my appointment with the surgeon. They told me that they faxed my info to him on Wednesday and to call them for any further info. I called the surgeon's office and was told that he reviews referrals and sets up his own schedule. I asked how long that takes and they said that it can take up to a week or more before he contacts patients.

I am losing my sanity. This pain is now a series of repetitive spasms from my neck to my right shoulder and down my arm. When it gets to my arm, it feels like someone is tightening a blood pressure cuff way too tightly, releasing it a bit and then reinflating it. After it does this several times, it lets up for anywhere from 5-15 minutes before it starts up all over.

The pain meds that I am taking are taking the bite out of this pain, but it is still there--and last night, I fell asleep before it was time for my night dose. I woke up around 2:30 and I was in excruciating pain. It took almost 2 hours to get things back under mild control with meds and ice bags.

All I want to do is cry and I am not sure how much longer I will be able to come to work like this. Today is the big 100th day of school and the primary children who have a big 100s party are way off task. I cannot exactly enjoy their fun and I cannot get them to focus either. MY shoulder hurts. A lot. I am truly, truly sick of it. I didn't even spark at all yesterday. I didn't log in and I did nothing on the computer at all. When I got home from the pool, I got my laptop out, but I didn't have the patience or energy to open an email.

I am sorry that I missed two new members in my Oa of the lower back team--I will try to meet them this weekend. I am missing my Basset Hound friends too, My son gave me a sweet mug for Christmas that is decorated with photos of Lady, Chloe, Scooter and Frankie. The kids here love it. The dogs are truly my best friends right now. I am grumpy and miserable. I need some help, but I am about out of options. This sure doesn't seem right or fair.

I know I will survive and I will do as well as anyone else in a similar situation. However, I don't like dealing with this and I need to scream, cry and curse all at the same time. This pain is taking all of my energy and inner strength. Today, our staff won a catered breakfast. Hmm, I had a half of a large bagel with some flavored spread and a piece of danish along with my apple juice and a half of a banana. That is comfort eating at its worst and along with what these pain meds are doing to me, I am guessing there will be another hefty gain for me on the scales tomorrow.

Someday soon, I will find myself and when I do, I will let you know.

Take care of yourselves. I am going to try and do my lesson plans with free time granted to me from hundreds day.

Gentle , gentle hugs,

  Member Comments About This Blog Post:

WALKZWDOGZ 1/29/2012 8:15PM

    Ohgosh. I'm so sorry. Sending prayers! emoticon

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BRAVEONE92 1/27/2012 10:30PM

    I can identify somewhat with your excrutiating pain.
I have experienced pain from back to that degree.
I was so glad when I finally got a good neurosurgeon
to do my surgery. Pain like yours, could land you
a trip to ER or a stay in the hospital, so that your
pain can be controlled. I think that is what I would
do. A person can only stand so much pain and if
it never lets up, it's no telling what it will do to
your body. I really feel for you. I will keep you
in my prayers. Praying that you get some relief. emoticon

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ENUFF81020 1/27/2012 9:48PM

    And when you realize that we have two major medical policies and they pay almost every penny of care, it makes this worse. I am pretty upset at being left in this condition--it has been 3 and a half weeks of this. That is far too long, yet there seems to be little I can do but wait and wait with the clock ticking so slowly as this takes over every pore of my thinking and functioning. I try hard at the pool, but I cannot do all of my exercises. People who know me well and care about me are getting really worried because I am not myself.

I wish I could remove my neck and shoulder, it hurts that badly. I could at least stand a break from this type of intense pain for a while--an hour would be good...

Thanks for your thoughts--I talked to one of my doctors today and he is going to try to speed this along a bit. I hope he succeeds.
Gentle hugs,

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EMRANA 1/27/2012 7:21PM

  I'm sorry it's this bad. As Linda said, you would think things would move faster. I just moved back from being in Canada for nine years, and I know all about long waiting periods ~ took me eight months to get a MRI for my spine, so I did a lot of damage trying to work full time while I was waiting.

Hopefully you'll hear from the surgeon ASAP! I'm giving you hugs in spirit today, as I'm guessing my usual ones would hurt. emoticon

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_LINDA 1/27/2012 3:35PM

    When you phoned this surgeon's office, did you mention you were in excrutiating, out of control pain?? Sometimes you have to really put forth your case strongly so they will pay attention. You are in crisis, really, an emergency if the strong painkillers you are on are unable to handle this pain. What if something is going on that can permanently damage you if it doesn't get immediate attention?? I am a little surprised with your health care system. Since you all have to pay, unlike us in Canada, I would assume you would get speedier attention and not have to put up with long waits for surgery or appointments..I would strongly suggest you call this Dr.'s office again, stressing how very urgent this is. They really can't tell from a piece of referral slip.
When I finally got a surgical date for my very first knee replacement, I mentioned to the secretary I was so glad because I was unable to walk on it any more, and she said I should have told her this information and she would have gotten me in to see the surgeon quicker!! Live and learn!
Please stay on top of your medicines, set an alarm for your medicine times and set it by you at all times so its okay if you fall asleep.
I feel for you and hate hearing in how much awful pain you are :(((
{{{gentle hugs}}}

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    Sylvia, I feel terrible for you. As a nurse, I get you to call ALL your doctors regardless of their specialty and tell them what is going on. One of them is bound to have the compassion to try to do something until this can be resolved. Love you. You are in my prayers.

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DEBBIEOLMOS57 1/27/2012 1:25PM

    hope you feel better soon

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Wednesday 1/25 Is Knowing Enough??

Wednesday, January 25, 2012

Hi all,

I have a break on Wednesday and decided to take it for me and a bite of lunch. I am starting to feel kind of bogged down. I do not feel well at all. MY vision and these cataracts are making things that I love to do really difficult. This non-stop, crazy pain is what is really on my mind. I am not up to doing much. I cannot finish my entire exercise routine at the pool. I cannot finish reading anything either--I cannot even finish sparking or eating or anything.

After falling asleep somewhere around 2AM, I woke up at 6 with that extreme "I want to slam my head through a window," uncontrollable pain. Megan had her head on straight and reminded me that little good come out of the window thing and she asked me if it was time to change my fentanyl patch. Hmmm, it should have been changed yesterday. That explains a lot. However, now I am playing catch-up with wonky eyesight and it is not a good time. I am trying to decide if I should put a rush on the cataract surgery and go for the plan my insurance will cover so that something is out of the way. I don't know when I will get an appointment with the spine doc to plan what my neck needs.

For a reasonably intelligent woman, things aren't going well and it seems as if part of it is strongly my part and the other part is this body that will not give me a chance for feeling well.

I will make a decision before bedtime tomorrow and execute it shortly thereafter. I cannot keep up with all of this!!

Gentle hugs,

  Member Comments About This Blog Post:

60SIXTY 1/27/2012 6:31AM

    emoticon . . & . . emoticon

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_LINDA 1/26/2012 1:21AM

    Sounds like you should be getting your eyes done. It should be a priority for your work, if nothing else. Impaired vision is no fun to live with, and I would be concerned about you driving.. Good on your daughter reminding you of your patche. I realize all the pain may be causing you not to think straight, but you really need to be on top of the pain medications if they can at all help you..
So very sorry you are suffering so much :(( Make some noise and push for an appointment with the spine Dr. Say you are in severe pain and will take any cancellations..
Hope your patch can take the edge off the pain for you. Take car4e of yourself and put your needs first when you are in a crisis like thsi..
{{{gentle hugs}}}

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ANOVELGAL 1/25/2012 3:40PM

    Praying for you as you make decisions about what to do. {{hugs}}

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    I think your body and brain are just tired. Hugs!!!!

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    This is something that you cannot blame on yourself but is most likely a result of a combination of factors including genetics and environmental factors. It's not easy to make decisions like this but don't second guess yourself. I will continue to pray for you and that you come to the right decisions.

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MERILYNN1 1/25/2012 2:10PM

    Oh, my friend, know just where you are coming from. I'm dealing with back pain (stenosis?-not decided!) and the cataracts too. I read today that if we can meet everything in our path as something that is supposed to be there and patiently accept it - we would have peace. Sounds good - I just have a problem with acceptance! Finally realized the cause of the deep depression that has gone on so long. Several years ago we had a very dark winter - rain, snow, clouds - very little sun. At that time the diagnosis was SAD - seasonal (something) deficiency. When I looked it up I was asmazed at the damage it can cause. The use of a happy lite was a major help. I still have the happy lite but one of my meds tells me not to use it!!!!!!!!!!!!!!! ARG!!!!!!!!!!!!! Plan to have a chat with the pharmacist - sometimes they know more about meds than the Drs.
Do you get enough light, sunshine? It's just a thought. Hang in there - spring will be here before we know it! Put you to the top of my prayer list!
Hugs, Meri

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Sunday, 1/22 Happy Birthday, Miles!!

Monday, January 23, 2012

Hi all!

Yes, birthdays are alive and well in our home. Miles is 21 today. That even got him some applause in church this morning after our pastor announced that the flowers on the alter were there in his honor. He asked Miles how old and after Miles answered, there was clapping and our pastor said that "That just doesn't seem right." It doesn't seem right to me either. 21 years ago, I was in a labor room after my water broke at home. I was having contractions, one after another after another. They went on and on--but nobody was paying much attention. It was the day of the start of the first televised war in the mideast--Desert Storm, I think. My husband and thenurses were watching bombs drop on Tehran, one after another after another. My doctor came up to my room from her busy office to see how I was progressing. I wasn't and she got a portable ultrasound machine to find that my baby was trying to be born shoulders first. That is the one way that a baby cannot be born--so they rushed me into emergency surgery and our 11 pound 2 ounce baby boy was born. We named him Miles Patrick and he was totally beautiful, especially after having avoided all of the hard work of being born in the natural way.

We were in the hospital about 6 days together. I had some problems after the surgery and they kept me to observe me. We finally got home and that is when some issues began with our fifth child. Our babysitter didn't notice it. Neither did his father. However, I smelle something entirely rotten on him everythime I fed him or touched him. I didn't love him less or leave him alone, I just kept noticing this smell that nobody else noticed. After a second day of this and getting negative responses from everyone, I finally called our pediatrician. Thank heavens for this wonderful man because his answer was "If it bothers you enough to call me, I want to see him." I took him to the office and they did some routine checks on him. They found his white blood count to be incredibly elevated and they did a lumbar puncture. It turned out that our beautiful boy had group B strep, a totally awful condition that kills newborns. I get chills down my spine when I think of the next thing our doctor said to me: "If you had brought him in yesterday, it would have been too early to detect and if you had waited one more day, it would have been too late to save him." That rotten smell that I was the only one to smell was an act of God and I definitely believe in Divine interventions. Miles spent the next two weeks in the hospital receiving IV antibiotics and I spent the same two weeks skeeping on a chair that made into a really uncomfortable cot next to him.

I met some interesting people int hose very long days that took a big chunk of my maternity leave. I met a family whose boy had ridden his Christmas bike outside without permission and had a nasty accident when he slid on the ice and flipped that bike breaking both legs in multiple places. He had been int he hospital several weeks and was expected to be there another month to six weeks. I sure felt sorry for his mother--but she went home at night. He was old enough that she could go home at 8:30 and then come back the next morning at 8, or 9 if she got to sleep in a bit. He was being tutored each day and spent a lot of time playing video games that were donated to the pediatric ward. I also got to meet the baby that started out being in Miles' room with him. She was a sweet little thing, about 6 months old and about half of his size. The doctor admitted her as a "failure to thrive" baby and she never had a visitor. She was beautiful and it was sad. The hospital was feeding her standard formula and she gained about 2 ounces every day. The staff knew that she could be released, but they kept her so,e extra time, putting off making a call to ask someone to come and get her. She didn't get to stay in the room with Miles because there was a lame possibility that his strep might be contagious. I think they were also concerned that the attention I gave her might be too great a loss, so they put her in a different room, all by herself. They gave her attention when they could and they brought her to the nurse's station on third shift when she was awake. The entire scenario broke my heart.

I learned a lot when Miles became ill. I understood miracles and I understood deep down sadness. I was pretty hormonal at that time--and being around children who were ill or deprived left a big mark on my brain. I do wonder where that little girl ended up, now that she is 21. The boy who fell off of the bike has to be in his mid to late 20's now. I wonder what kind of work a junior daredevil ended up doing.
emoticon emoticon emoticon emoticon emoticon emoticon emoticon
As for me, my pain has been a bit more tolerable today. I went to the grocery store before church. After church, I went to the fitness center--to the pool and to the sauna. I am following my pain doctor's advice to medicate myself and treat this as quickly as symptoms and pain are a nagging feeling so that it doesn't get ahead of me. This is a tricky game condiering how many different meds and patches I am using to keep this thing at bay. It is never totally gone, but I can make it kind of numb. That is a great improvement over the out of control screaming pain I felt every day of the sixteen days before Friday. I am blessed.

Have a wonderful week!
It's always good to count our blessings.
Gentle hugs,
PS I fell asleep before I posted this. I slept for almost 4 hours without an interruption. I haven't done that since this pain started. Yes, it is what woke me up, but this is improvement. I'll take any little bit of improvement I can get.

  Member Comments About This Blog Post:


    I am so glad that you are finally able to get some temporary relief. I hope that this continues until you can get this problem remedied.

I loved the story of Miles and will always remember him as a gift from God. in the midst of a war and against formidable odds he is here is still here with us to be th hope of our future.

As a hospital supervisor I often encountered the failure to thrive syndrome. People who dumped their sick child and even went on vacation. It always saddened me and I would stand at the child's beside and try to comfort them. I hoped that someone along the way would come into this child's life and make a difference. You, Sylvia, do that every day as some of your charges are those very children. Prayers are often answered.

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JRSWHIMSY 1/23/2012 11:19PM

    I stop and wonder about people like that too sometimes. A little girl in the class I student taught is moving far away soon, her mother won a custody battle and his taking her home. Her mother walked out on them when she was a baby and has suddenly become interested again. Somehow she won the court case and got full custody several states away. This poor little girl has been in 5 schools in 3 years and has severe emotional problems. Now it's one more school for her and who knows what else. I'll worry about her for the rest of my life.

I also know that sick baby feeling. My little Even will turn 7 in a couple weeks. When he was 4 months old he started getting severe nosebleeds. He also didn't clot properly, and they couldn't find a reason. I insisted on every bit of information I could get, but I wasn't prepared for "it could be nothing and he'll grow out of it" to "it could be a bleeding tumor in his nasal cavity and he'll be dead in a few weeks". I thank angels nearly every day that it was nothing and he did grow out of it, but what a terrible sentence to hear all alone in a doctor's office, holding this precious little creature.

Eek! Going to bed before I start crying!

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_LINDA 1/23/2012 12:41PM

    Being in the hospital sure is an eye opener. I saw my first amputee, an elegant elderly lady who would cry softly at night. I brought her jigsaw puzzles to do in bed, small easy ones, but she enjoyed it. I saw a man with his abdomen wide open to drain from infection, all this when I was a teenager as I was too old for the children's ward. I also heard the ticking of a man's new heart valve replacement. I pretty much grew up in hospitals and saw a lot of tragedy and a lot of courage too. This is a very poignant story of Miles. So glad everything turned out okay with him. I imagine that being a Mom is the hardest job in the world going through these trials.
I am so glad this pain Dr. was able to help you. Staying on top of it does work. That was stressed to me when I was going through a particularly painful time. That is wonderful you managed some precious sleep.
A very happy birthday to Miles!
Have a good week my friend,
{{{gentle hugs}}}

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Friday, 1/20 FINALLY!!!

Friday, January 20, 2012

Hi all,

I finally have information about what has been causing all of the pain and grief. I didn't need a "new" MRI, the October one was adequate. My pain doc took a look at it and it said that I have damage to the disks between C3 and C4, C4 and C5, and C5 and C5. He had a similar profile and although he offered (and did) an injection in my neck, he said the only thing that is truly going to help me is surgery. He is scheduling an appointment for me with the best spine surgeon around--it may be a wait to have the surgical consult, but it is starting to happen.

My pain doc has had the same issue and he was able to trace with his finger exactly where this wild uncontrollable pain is at. He offered me everything to help until we can get me to the surgeon. He LISTENED to me and was kind and gentle. That injection was a bit of a stinker--I am hoping to get short-term relief from the injection and the prescriptions refills he wrote for me that the other docs have given me.

He told me that he understands this and it hurts like #ell. I don't know how long I will have such awful pain--I'm praying for relief with this injection in my spine--but it is a relief to know that somebody finally GOT it. I can move forward now.

As for eating, in the last week, I have had a steroid injection in my shoulder, 6 trigger point injections in my upper quadrant, and now a major injection into my neck. I will be having to fight off what the steroids cause. I will have to keep praying. God bless my pain doc!!

Thanks for being there for me--you all got this too, and I appreciate the awesome words of caring and support. Take care of yourselves, you are wonderful.

Gentle hugs,

  Member Comments About This Blog Post:

SCOOTER4263 1/21/2012 5:00PM

    Sounds like the hard part - finding the answers - is done. The injections are no picnic, but they should help significantly with the pain. Spinal problems are so challenging.

Your Spark buddies are all here for you (trying to decide whether adding, "We've got your back!" would be entertaining or tactless....)

Gentle emoticon

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NPA4LOSS 1/21/2012 11:12AM

    emoticon that you are receiving some answers. emoticon

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EMRANA 1/21/2012 9:36AM

  Competent doctors are such a blessing! I know you won't be looking forward to yet another surgery, but it will be worth it to get relief.

Why can't they all be like that?

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FELINA 1/21/2012 9:02AM

    I am so glad to hear you got some answers and a solution. What blessed relief ! The not knowing is horrible. I hope the wait for the appointment doesn't take too long. Fingers crossed.

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60SIXTY 1/21/2012 7:20AM

Progress toward answers is answered prayer.

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_LINDA 1/21/2012 1:30AM

    So someone didn't catch this the first time around when they saw this MRI?? Sorry to hear there has been such damage to the spine :(( Never good news and always risky surgery :(( I do hope the Dr. they find is not only good, but very experienced at dealing with this.. I fervently hope the injections do something for you..
{{{gentle hugs}}}

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ARIANERA 1/20/2012 10:20PM

    Was this the doc you were afraid was still on medical leave? I'm glad that he came through for you.

Sorry that the answer is likely to lead to more surgery, but glad you do have an answer.


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PUGRAD1995 1/20/2012 9:56PM

    So are they talking spinal fusion then? At least you can start to draw up a battle plan when you know what you are dealing with! emoticon

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    I'm glad that you finally have an answer and can prepare yourself for what is coming. At least it sounds like this doctor knows what he is doing and what needs to be done.

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    So thankful he listened to you! Sorry you have to endure the pain longer, but it will be easier I'm sure knowing there is an end in sight. Hugs!!

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MKPRINCESS007 1/20/2012 8:13PM

    Thank God for some answers! What a blessing! Praying that the injection and meds will give you some relief until the surgery can come together.

Big hugs, and I hope you get some relief as soon as possible.


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