Chronic Pain

WELCOME GRINDERS AND HAPPY APRIL!

I SEEM TO STRUGGLE AT REMEMBERING TO START OUR MONTHLY THREAD/CONVERSATIONS ON TIME. NORMALLY ADRIAN REMINDS ME AND WITH OUR MY LADY FRIEND TO KEEP ME IN LINE.

ALTHOUGH WHAT DID REMIND ME OF STARTING OUR APRIL CONVERSATION, WAS AN EMAIL THIS AM FROM OUR DEAR FRIEND ADRIAN. SHE'S SETTLING HERSELF IN, IN ARIZONA. I WAS JUST THRILLED TO HEAR FROM HER AND I HOPE SHE WILL BE ABLE TO BE BACK ONLINE WITH US AS SOON AS SHE CAN.

WE LOVE YOU ADRIAN AND MISS YOU VERY MUCH. CONGRATS ON FIGHTING AND ACHIEVING YOUR GOAL TO MOVE TO AZ. I'M SO HAPPY FOR YOU HON!

WELL YA'LL LETS GET STARTED HERE IN APRIL.

HUGS
BETTY

Good Morning gang

I'm all packed up and ready for Rod to come get me. It's only 12:30 pm and I'm really glad that I was up very early. Father's home visit day is today (First Friday of the month), so I asked him to come here this morning and he did. I set up a really nice little alter here on the coffee table and I was all ready for him. I'm just so thankful that he came and I got to pray & receive communion.

This morning Sis's old dog fell down out on the slick Deck outback and she apparently fell while she was going potty and she ended up rolling around in her stool, so I had to do a deadlift off the ground and carry her into the house, strait into the shower and give her a bath first thing in the am before meds. UGH!! I'M IN PAINNNNNNNNNNN!!!!!!!
I Cannot wait to get home.

Rod just walked in, so I'll see you guys all from home.
Hugs
Betty

Hi pain gang!

I have just been busy and exhausted, so I’m sorry for lurking and not posting. Pain has been up and down and a bit annoying. Family issues have cropped up and are annoying. I’ve had weird emotions. I hope you are all doing ok.

Danielle, I know how overwhelmed you must feel between working, pain, puppy, husband, recent surgery, etc... I hope you are taking care of yourself! I’ve been thinking about you!

Betty, I’m glad you had your special communion time. I know how much it means to you! Thanks for your kind words to me and for not giving up on me. Life has been difficult, and interesting, lately for a variety of reasons. But I did decide to go back to my counselor and get some advice. So that will help. I appreciate all your insights!

Chuck, I agree, your words of wisdom about family, traditionally male and traditionally female roles and emotions, etc. were very informative and helpful. Living with males myself, I can attest that sometimes what I think I have communicated, has come across a completely different way from how I intended. So thanks for your input!

Deb, thanks again for all your understanding and support. I appreciate your help! You are awesome! I hope your appointment went well today with the osteopath and that you are not in too much resulting pain. Please take it easy on yourself. I think Betty is right: consider your letter many times before sending it. I think that is a prudent idea.

Peppi, good to hear from you! I’m so sorry you have been so sick! That is a horrendous flu... Please take care of yourself and heal well. Back to work a few hours? Sounds familiar... lol. Hang in there and I’m glad you said hello.

Binkie, what a road you have had! I’m glad you are doing much better and I hope your progress continues. Thanks for stopping in, also. We are glad to hear from you. I can’t believe you had the loss of spinal fluid for 7 days! I had a spinal headache for 2 days after a failed epidural steroid injection and I thought I was going to die until they did a blood patch and I laid flat for two days and it was relieved. I hope you never have that problem again. Was it caused by the pump installation?

Deborama, glad you posted to say hi, too! I wish you wouldn’t have that swelling. That concerns me. I hope you are ok and that it does not continue! Almost time for your surgery! How are you feeling about it? I am very hopeful for your improved health as a result!

Alrighty, everyone, and others I am missing, Adrian, Debby, everyone else, I hope you all have a great weekend!

Good Saturday Morning Gals & Guy,
It is a damp, damp, rainy morning. It started raining yesterday, there is a rainfall warning for today and I looked at the projected forecast for the week and it will rain until Friday. I hope the weatherman is incorrect as usual. lol The silver lining is that IT ISN’T SNOW and that the rain is making the snow melt more quickly, Yea!

The letter I wrote to my family (which all of you helped me with so much) and the sadness over Diana leaving (which has now turned into a bit of anger) has been all consuming and I have to let it go. My therapist wanted to help me rewrite it and even offered to do it herself. In the rewording she hoped to break the cycle of how I express myself and how my family withdraws more. At least that is what I think she was trying to do………she never said those words. I tuned out after she said rewrite it. I felt / feel the essence of me / my feelings and my writings would be lost in the process. Our time ran out before we could resolve it. I didn’t show the letter to my osteopath Bruce but we discussed it. He really knows my body and my family issues after treating me twice a week for 2 ½ years. Bruce thought that any further attempt to explain my condition or needing help to my family would further alienate them. After reflecting some more, I agree with Bruce. I won’t send the letter but it is festering inside me which is not healthy.

My pain has settled down a bit and Bruce’s treatments have helped most of my leg muscle function to return to its normal jumpy self. I can now contract my muscles if I think really hard about it. It is funny though, I have to think really hard to get them to release after contracting which is new. lol

Chuck, I haven’t looked at your weather but I bet you are having nice weather. It often seems when yours is bad mine is nice. Lol I hope you are able to get out for your daily walks and not needing your friend the heating pad too much. I read your discussion about the TV shows and Betty’s response. I guess we are coming up to a summer of re-runs. I suppose it doesn’t bother most people who are out enjoying the activities of summer but for me / us when in pain; the TV is a good distraction and a boring one in the summer months. Perhaps there will be some interesting trial shows, who knows…….we have to look at the glass half full, right?

Ellie, I am so sorry you are having some troubling family issues. We are here for you if you need us. I think you are amazing with all that you have accomplished in the last 6 months. I hope your family remembers who amazing you are too! Hang in there!......This too will pass.

Betty, you have had quite the busy last 10 days with your travels and then straight to Helen’s house. I hope you can rest but without too long a recovery time so that you can enjoy being home too. When do you go back to Helen’s next?

DebO, I have been thinking a lot about you and hoping the swelling has gone down and that your pain level is bearable. How are you feeling about the upcoming surgery? Do you have a good confidence level in your surgeon? It is so important. Are you going to draw and arrow on your body to point to the painful side? Or words to the effect of NOT THIS SIDE on the non painful side? The new TV show, The Doctors, said they agree with this idea to avoid errors. Lordy, what else to us patients have to do to get better? LOL

Danielle, I hope you have a restful, rejuvenating week-end. I can only imagine how hard it has been for you working while recovering from surgery. How has the stimulator been working for you? I remember that Ellie had to have an appointment with her technician for a major program adjustment, a couple of months after the implant. I imagine it is hard to figure out which stimulation programs work best for you. Bravo, for all that you have accomplished to get better.

Adrian, It was great to finally hear from you. I have been so worried about you. It is hard to keep writing to you when I don’t know if you reading. I hope you will tell us more about how you are, when you are up to it. Love you lots!

Nobody answered if they knew about the ice pick cane extension piece. It really is a help in the ice and snow and highly recommend it for anyone who has to use a cane to get around in the winter months.

Well, it is time to get going and see if I can get some house work done today.
Wishing you all the best week-end possible.
Gentle hugs to sooth your battered souls,
DS Deb

good evening everyone. It has been a strange week for me. The brusitis in my left hip flared again big time, and I had it injected on Wednesday. I listened to your advice this time DS Deb and did basically nothing Wed and Thurs. Thursday night it was so sore I was awake until 400am. good thing there was one of my favorite movies on Fried Green Tomatoes. I finally fell asleep. We went out for a short while last night. Today it is achey and I can't seem to find a comfortable position to even rest. We have another outing again tomorrow, and then family dinner. I will have to think of something simple for dinner (hard for me , although I am getting better.) I am feeling very restless and refelective. March makes it one year that I have been off work. I have it in my mind that i am going to return to work in Aug or Sept. As positive as I am about this surgery and hopeful that it is going to fix everything I am so scared that it is not. I haven't really even verbalized the negative, because I have a good inner feeling about it all, and it has really given me a glimmer of hope. It gives me strength. With all of that I have the task of stopping all of the pain meds I am on as well. That isn't worrying me all that much because they have never given me a high or anything. AND then the weight gain that I have had. I have about 25 to 30 pounds that I want to take off too. I know with the increase in activity with the decrease in pain it will make it easier. My hubby has gained weight too because he quit smoking. Maybe this will be something we can do together is walk and go to the gym. There is so much I want to do, gardening and making hanging baskets. Some painting and up keep inside the house, the list goes on. I am feeling a little overwhelmed I think. Maybe this is why I have a restless feeling I can't shake. The wind storms seem to have ended for the moment. We have beautiful and sunny weather. On Friday I was sitting on the deck in a lounge chair in a tank top reading. it was so nice 18C. I have been reading some really good novels as of late. I bought a whole lot more at a second hand store the other day. Although with my recovery will come a bit of studying to ready myself for my return to work. I know all that knowledge is in there somewhere but I think the dense cobwebs have to bw dusted out, LOL.

DS Deb: I am so sorry the letter is giving you so much grief and discomfort. I am sharing your anger a bit too. You are such a giving and selfless person I am feeling angry with your family too that they reacted the way they did to your limitations. I DO think they need some sort of letter. I do waht to draw an arrow to the left side of my body. I want them to remove as much TVT tape on the left side as they can. I so hope I can talk to the surgeon prior to the procedure to stress that.

Betty I am so glad your time at Helen's is up and you can go home and gain your strength again. Waling up to a dog that rolled in poop and had to be showered BEFORE morning coffee had to be difficult to say the least. It has me giggling now though. Wow!!

Ellie: darling I am so sorry that things are so stressful and tiring for you at the moment. I too live in a household of boys and sometimes it gets a bit difficult. Even through this whole thing I can count the number of times on one hand that sinner was made for me. it is me making dinner every night. it gets to me after awhile. Infact on Thursday, I wanted spagetti which my husband hates so he made a sandwich and Thomas an I had spagetti!

Chuck thank-you for your words about roles and men and women. I hope your pain isn't too high and you are able to enjoy your walks.

Danielle: I bet you are just so tired this weekend. I hope you were able to rest as much as you could and power up for the beginning of your next work week. I would love to hear about your new job when you can hon, hugs.

It is nice to hear about Adrian. I am looking forward to haring from you again.

Hello to anyone else I have missed. Chat with everyone soon.

Love Deborama

Greetings all,
I'm down today can't hardly stand up straight/my right leg when
I do stand doesn't want to work at all. Odd thing our weather
has been decent some rain & cold at nite, we have a major change
coming. cold and snowy. We went for a walk yesterday(about 25 min)by,
the time we got back my leg was gone.
So, I'n on the pad again and it's nice on the porch..
Betty, jason and grant are my favortire ghost hunters. The
young guys on international are ok but, they're a little
different.
Well guys I'm going back to the pad..
chuck

Hi DebO,
It was great to read your posting this morning. I don’t understand why you have so much pain after your hip bursitis shots. Does your doctor inject some freezing agent at the same time? My hips only really hurt after the shot if he misses the right spot. That is why resting and icing for 5 days after is hard to do because the pain is so much improved after the shots. The icing /rest is supposed to help the cortisone shots last for a longer time. I am so sorry that you have had increased hip pain. Maybe it isn’t a real bursitis but caused by your tape problem, is that possible?

I hope you have fun today with your outing and family dinner and that your boys help you out.

I agree with you about not focussing on the possible negative outcomes after surgery. It is so normal though to think of the what if’s. It is scary and there are no answers that anyone can give you now so there is only today, “One day at a time”, and the hope that your surgery will significantly improve your life. I think that it is more than a hope, there is a very, very good chance you will feel much better. Hang in there honey!

Hey Betty, are you ok? We haven’t heard from you for a while and you are so good about writing to us that any absence is concerning. I hope you are only taking time for yourself to recover from your trip and time at Helen’s house. Love you lots and write when you can.

Hi, Binkie, Debby and Peppi. It was great to hear from you. I hope you will write again soon, when you are up to it.

Danielle, Thanks so much for your really nice MSN to me about using my letter. I am so happy if it helps anyone and very glad if your hubby was able to understand “our” situation a little more. It is so hard for our families too. The people we love the most and love us the most, so often hurt each other with words and actions born from frustrations of not knowing what to do. Receiving understanding and communicating understanding becomes so much more difficult when “Mr. Pain” is always in the background. You are doing amazingly well coping with all that you do, especially while still healing from your surgery. I hope the emotional tensions of home relax so that the 2 of you can just enjoy each other.

Chuck, I don’t know how you keep your spirits up as you do and also hang in with us women! I do so appreciate your writings. Thank you. I hope that leg of yours isn’t spasming too much today.

Adrian, sweetie, please write to us. I truly wish you all the happiness you so much deserve.

I have really been fighting the self confidence demons. I am very unsure of making any decisions which is so unlike me. I am feeling very alone and a bit hopeless medically.

Bruce will be moving to France on the 15th. As I have told you, he will be coming back for the first 2 weeks of every month. These treatments and his knowing my body so well has been my salvation. I really can’t afford these treatments even with his giving me a half price charge. I know that when he has taken 2 week vacations in the past that it takes me 3 weeks to get back to the level of function that I had before his vacations. He has associates that I can see at full price if I get into trouble while he is away BUT one wrong move with my pelvis and I will be in bed only.

My family doctor has no suggestions for me but to continue what I am doing. As I have told you, he will not give me a referral to any orthopaedic specialists because they are all looking for a surgical solution for me, according to my GP. And he will not support any surgery for me because he believes it will leave me in worse shape. He may be right but I think I need to be assessed by a back specialist. It is almost 3 years now since this all started and I haven’t yet seen an orthopaedic specialist.

Kelly, the international solution person has sent all my OLD MRI’s and CT scans to 2 Department Heads, back specialists for assessment………along with an overview that I wrote about my symptoms. We have heard back from one of them who says that the only chance that I have for a solid recovery is an anterior, key hole, fusion of L5 to my sacrum with bone from my iliac crest or some sort of new protein. Funny, that is what my daughter had done in 1995 but not key hole (1 ½ in incision). Her incision was a “smiley” from hip to hip. She almost died from a small infection. Touch wood, her back has been fine ever since. This doctor may be right and truly qualified to do it but it will cost me at least $30,000 US plus staying in the area (California) for follow up and healing until I can fly home. With the exchange plus income tax, because the only money I have for this would be my RRSP, I figure the cost will be $60,000 C or more. My nest egg will be gone. I probably wouldn’t be able to get any money from the Canadian health care system because there are doctors here who could do this surgery. BUT WHO, WHERE????? HOW DO I GET TO SEE THEM????

Anyway, I need to get going with my day. I wish all of you a really good Monday and thank you so much for being there for me. I don’t know what I would do without you.

Love you lots,
DS Deb

Afternoon Painiacs,
Well we had some semi-warm days now we're
back to winter. 38 today 20's today with
some snow and freezing rain. My right leg/hip/foot
still flared some.
Another fun day unfolds!
chuck

Good Evening my dear friends

It's been a rough few days, but I'm beginning to come out of it. Funny how I thought that my recovery would not be so bad this time. Just goes to show that a person never can tell what tomorrow will bring, when your chronically ill.

I came home on friday afternoon and got my puter all set up here, then as I sat here to unwind a few moments, I could not even keep my eyes open, so I finally stopped fighting it and went to bed and did not get up till early Sunday am. Cheryl (my home minstry lady) brought me communion in the afternoon. Mass ran really late because it was Palm Sunday. We do a Palm Sunday procession into the church holding palm frohns and singing hymns and the scripture readings are alot longer than a normal Sunday too. So she did not get here until nearly 3pm. I did not have anything going on, as usual, so no biggie. I was just grateful she came.

I'm feeling prett weak he last few days and have been coming to bed to lay down around 5pm or 6pm. I did atleast stay up today and eat dinner out in the other room. Sat & Sun night, Rod brought me my dinner in bed. Sounds pathetic,but true. I'm hoping to feel better tomorrow, I've not been able to get outdoors and enjoy the 65* & 72* days the past two and that's a bit frustrating, but I have gotten up in plenty of time to look out the windows and enjoy several hours of sunshine atleast and that's better than being in bed when we have sunshine.

I'm going to get off here and lay back on my pillows for awhile, so I hope your all doing well and also hope you've gotten some break in the weather too.

Lotsa hugs & love
Betty

Greetings from the frozen south,
My pain is actually down some so I'm
not going complain about the weather..
Betty, I feel the same way here at our
place the way my room faces out. Even on
the heat pad I get a nice view, it's quiet
back here so it has a calming affect too.
Guys I have to share this with you.
Like I was telling Bobbi the other day.
First the first time in my life if I had
the means I could live in another country,
maybe New Zealand. I know it's kind of out
of the blue but, it's been bothering me the
last few weeks. I never thought I would ever
say that. I've seen enough of the world to
know where I belong. Till now.
Thanks for listening.
Chuck

Hello Pain Gang

It's bee another excessively painful day. I'm getting ready to head back to bed. I'm just very tired and cannot stay sitting up.

Earlier today I had to unfornunately had to spend by corresponding with my paralegal for my SS case. I really wish they would get themselves organized and figure stuff out. I sent in all my current information, apts, meds, procedues, etc. Then te paralegals assistant calls me at 6am yesterday morning. So when I got up, I emailed them to let them know that I would NEVER be up to answer the phone at that hour, so they may want to call a bit later.

Then she wanted to know the dates, times, etc. of all my recent medical stuff for the last 6-8 months. So I had to write them back to let them know that I already filled out all that info and mailed it to them, on 3-19-09, so they should already have all the info. Boy I wish I would of met you Chuck, just a couple of months earlier and I could of possibly not had to deal with all this confusion.

I hope you all doing alright, I'm sorry for your feelings Chuck and I have some simular thoughts too.
I think that my time at Helen's, although painful and very difficult. They stil allow me to have some type of life, instead of being stuck here at home for weeks on end. I'm really not sure what is the worst. Depression has been cutting into my home life somewhat. Rod & I have had a few productive discussions and that part is better. I guess this life is just difficult and there are very extreme hills & valleys right now and I really hope for some peace this summer.

On a lighter note, it's been in the 70's here and really nice. Although a rain storm is on it's way to ruin it and as I was wonering why I was in such high pain this am, the alarm on Rods Weather station went off to tell me there was a big pressure change going on and that confirms a storm is coming and exactly why my pain was/is so high.

I'm sorry to not be very talkative the past few days. Please don't take any offense, it's just I'm tired, depressd and in pain.
It's time for me to go lay down and rest, but I'll see you all tomorrow, after Rod & I do our taxes on the desktop. UGH, it takes hours and is just another painful situation for the typer.
Hugs & love Friends
Good Night
Betty

Hi All,

I hope you are all having a good day. We've been having a lot of drastic weather changes here in my part of the country (snow yesterday), so the pain levels have been up some, but otherwise, I'm doing well.

I'd like to ask a favor. We have a new community member in ChronicPainConnection who has done a Sharepost and is really anxious to hear from some other long-term chronic pain patients, but thus far I'm the only one who has commented on his/her post. If a few of you could pop over and briefly share your experience and offer some encouragement, I would really appreciate it. Here's a link to the Sharepost: http://www.healthcentral.com/c...43479/65396/decades/

Thanks a bunch!
Karen

Good Evening good friends

It's been a much better day today, it seems all the recent stressors between and on top of Rod & I's shoulders have been lifted by a wonderful phone call of wonderful news from Matthew and then Rod & I sat down together and TurboTaxed our taxes and will be receiving a very nice refund from Uncle Sam.

Rod & I have had several much needed talks over the past few days and I think we are both back on track of what's going on in our lives & relationship, for atleast the time being. I guess every couple has to go through these tough times to grow and rekindle ourselves together. I'm just hoping it's over now and we can get back to normal.

It's been a cloudy day here and about 20* cooler than he past few days, but atleast Rod got his 18 mile training run in and was done by 1pm. So we just spent the afternoon together and Rods been celebrating with a couple of glasses of Red Wine. He made us a really good dinner and we are both going to bed at 8pm, to watch our Wed night programs and then I hope since this enormous weight has been lifted off our shoulders, we both can sleep tonight. Last night, I barely slept a wink all night and Rod was awake most the night too. Pain has been to high for me during the night and Rods just restless.

I hope your all doing well and have made it through the past few day. I read Karens post to us earlier and made my reply to Beanie. I hope some of you can and will do the same. He's really had a tough 20 yrs and I'm sure by his explanations of his spnal troubles, he's really in severe pain. I just hope he will join us and give us a try, but if not, then I hope he can find others to communcate with. We all need some pain peeps who understand us. I know I would not have any idea what to do if I did not have all of you and I appreciate each of you very, very much

Good Night, Sleep well and Ill chat ya all tomorow.
Lotsa hugs &love to all
Betty

I forgot to add this to my last post and wanted to share Karens most recent sharepost with you guys. It's really worth the read and I hope you all will find it as helpful as I have.

http://www.healthcentral.com/c...949/66364/understand

If you don't already subscribe to karens sharepost, I really recomend that you click on her subscribe button so that you receive email notifications as to all her sharepost, what they are about and then you can get them weekly like I do.
Another good persons sharepost are Dr. Lasichs (sp) sharepost, I subscribe to hers and have found some great advice and additional pain info from hers too.

I hope you enjoy these as much as I do. We all can learn a great deal from these two ladies and for one will never stop trying to educate myself on what's going on in the pain world today.
Hugs Family
Betty

Nite time greetings all,
Thought i'd drop by before I went to try and
sleep.
We had a good day today, relatively low pain.
My bro and sis came by and we had a cookout
for my daughters 25th birthday and a good time
was had by all.
We're supposed to go back to rain tomorrow but,
today was nice.
Anyway, good nite all.
Chuck