Chronic Pain Lifestyle

The Value of Dino

   The Value of Dino In the past week, my attention has been to animals, specifically pets. I spend a lot of time watching TV each day. Mostly BBC America. For those that know me personally, this is not a surprise. I love all things English. I’ve loved reading about England since I was a small child, Good Queen Bess was one of my favorite books and I discovered Agatha Christie while I was still in grade school. On BBC America, several times each day they have a commercial staring Sarah McLaughlin. She is singing about angels while they show pictures of dogs and cats, some sick, some obviously terribly mistreated, some dying. The ad is for the ASPCA, the American Society for the Prevention of Cruelty to Animals. I can barely listen to the first strains of that song, without getting teared up. I donated several hundred dollars after seeing that commercial one rainy afternoon. I challenge anyone to sit through it without reaching for your wallet. Between the sad commercials and all of the talk of pet food recalls, pets are definitely big news. Some people who have lost their pets due to contaminated foods, have filed lawsuits for the loss of companionship. This got me to thinking about the value of my dog, Dino. What is his value? And how do I make a good estimate? Do I subtract the things he’s chewed up? Or just a gross estimate of his value? Let’s see, Dino is the one who makes me get up and walk, a lot. He used to need to go outside a lot when he was just a few months old, but I’ve noticed in the past few months, that he is just doing it to get me outside on nice days. And since I don’t know when he has to go and when he is just getting me up, I am forced to get up and take him out around 20 times a day. No chance for me to get stiff joints, he makes sure of that. And then there are his three duties in this house. First, he brings me a rock from our landscaping every time he comes in the house. This adds up to a dozen or so rocks a day. I normally give him a treat when he brings me a rock, but not always. I don’t want him to turn into a little fat dog, I’m battling my extra pounds as it is. Then there are his recycling duties. When I finish a bottle of diet Pepsi, I rinse it out, toss the cap and give the bottle to Dino. He thinks it is a fantastic toy. He chases it on the ceramic tile of the kitchen, into the living room. He rolls around with it like it is a wrestling buddy, he chews it, barks at it, removes the label and flattens it. This takes about an hour. Once it is flattened and if he is through with it, I put it in the recycling container. Jerry says that he likes it because Dino flattens the bottles for him. I just think it’s cute and it really wears Dino out. A couple of sodas as day and he’s exhausted. And DIno’s final duty, getting the mail. If you say the word “mail”, be prepared, he runs to the door, jumps up and tries to pull the curtains down and starts yapping and wiggling so much it’s hard to get his leash fastened. Jerry and I now spell the word “mail” because we can’t use it in conversation without getting him really excited. It is really cute and the walk to the mailbox is just down across the yard and across the street. At least I get out of the house. Then there is Dino’s more intangible worth. Things like the smiles and laughter when he does something funny, like chasing shadows in the family room when the door opens and shuts or pawing at the patio door to try and get the neighbor’s attention. They tell me they love watching him at the patio door. He sticks his head between the floor length vertical blinds and watches the yard and the street several times each day. There are other things that Dino does, that he is not even aware of. He makes me happy and he helps me deal with the demons. The demons that come calling every once in a while and threaten to bring me down. In the past two weeks, those demons have been here loud and clear. They cause me to miss things and people, things I can’t change, people I can’t bring back. They are truly demons. When I’m this upset, I don’t like to see anyone or go anywhere or do anything even writing feels like it is a chore, it’s taken me almost two weeks to just address this problem. First and foremost I miss them, Dallis and Austin. My two big black beautiful dogs. I miss them so much it hurts, it feels so bad and I’m so tired of crying about it. I love them so much and some days like today, I can’t stop crying and thinking about how much they mean to me. They took care of me, they protected me and they loved me. It’s not that Dino doesn’t, but it’s just so hard without them. Second, I miss work. To put it more plainly, I miss me. I miss the person I used to be. I miss the person who took care of her home, her job, her garden, her pets. I took care of things and now I have to have someone take care of me. My poor husband has to work full time and do all of the yard work. I finally hired someone to clean the house. She’s wonderful, her name is Jane and I feel like I should pay her double, because as she cleans, we talk and it’s very good therapy. So there they are, my demons. And Dino knows all about them. He listens to me and he does care. When I cry, he lays down by my feet and looks up at me with his big brown eyes. He doesn’t get a toy to play with, or beg for a treat or even try to get in my lap. He knows that sometimes I just need him to be near and with that sixth sense of his, he knows what I need and when I need it. And that is Dino’s worth. Not all the money for all of the therapists and counselors in the world are worth what Dino gives me. He accepts me, loves me and gets me to move on and stop feeling bad. He is not jealous of the love I have for Dallis and Austin, he is smart enough to know that when someone dies, you don’t stop loving them. Your love is there forever and that’s good. If you didn’t feel bad when you lost a loved one, that would be the true tradgedy. You know what they say, love hurts. We all have demons that come to call, the important thing is to realize they are what they are and you can’t let them run your life. After a good cry and maybe a nap, I get up, blow my nose and do something. Anything at all will do, the demons don’t hang around very long when you do something to take your mind off of them. They only revel in their strength when you are crying or sad. So blow your nose, put on your favorite radio station, or pop in a movie in your DVD. The other night Jerry and I actually sat and talked and I asked if he would like to watch a movie that was on. We watched it together and laughed together and for a while at least, I felt better. And now after writing all this, I feel better again. Don’t let anything come between you and your happiness. The loss of yourself, or someone dear to you is hard, but it isn’t the end. Believe it or not, you matter. You matter a lot, the world is a better place because of you. Now, dry your tears, blow your nose and smile. It will get better, I promise and Dino does too.

Pain Pumps & Me Part 8

Pain Pumps & Me Part 8

    It seems to me that it’s been a very long time since I wrote the Pain Pumps & Me series and published it here. I truly thought that my pump was working properly, my medications had been straightened out, and all was well with my world. Well, I was wrong again.

   The pain has continued to get worse and I am wondering just how much more this mortal body can take. I called my pump nurse and told her my sad tale. She was well aware of my plight because I had already discussed it with her at my last refill. She talked to the doctor and got back with me. The message was to increase two of my medications and see what happens. All that happened was my side effects got worse along with more pain. 

    The next step was to see the doctor. My appointment was scheduled at 9:00 but we didn’t get to see him until 12:30 but it was worth the wait because he took the time to answer questions I had about the pump. Questions such as do pumps that use only Baclofen (a muscle relaxer) get granulomas? Yes they do. What causes granulomas? They appear to be dose related or concentration related so it is better to use the least amount of medication as possible. He prescribed Neurontin for me to take until my next visit in three weeks. I tried but it simply has too many side effects for me to continue to take it. Neurontin, Lyrica, and Cymbalta are all FDA approved for diabetic neuropathy pain and are often used off-label for neuropathy caused by other diseases. I am diabetic and all three of these medications do help me but those side effects can make the cure as bad or worse than the pain they are meant to relieve.

    I went back to see the pain doctor earlier this week. I had no idea what to do about this whole fiasco. The pain is still so bad and I know I’m just about to the safe ceiling limit for intrathecal medications. After another long wait he finally comes into the exam room and makes himself comfortable. (This is a good sign.) He asks about the Neurontin and I tell him that it works on the pain but the side effects are very bad. He said that in that case the Neurontin did not work. I asked why and was told that any medication that works but has side effects so bad you don’t want to continue it, does not work. Then he said it is time we check out the catheter to make sure it doesn’t have a leak or scar tissue enclosing it or one of several other things that can go wrong with one. I’ve had this catheter for 16+ years and that’s a very long time. Even though I got a new pump last year we didn’t change the catheter out because of my spinal disease, Adhesive Arachnoiditis.

    The process to check out the catheter is simple. The medication is removed from it and a dye is injected into the catheter itself, not the pump. Then they use an x-ray method called a fluoroscope to watch where the dye goes. I do have a leak and a couple other problems. I’m not getting my medications where I need them and I’m not getting the full dose due to the leakage. The scheduling office will call me with a surgery date to replace the catheter. I hope it is very soon.

    It’s hard to describe how I feel just knowing that there is once again hope for getting much better pain control. Until then I’ll continue to hobble along while trying to do my best. At this moment my best is to go have a bowl of oatmeal.

Wanda

There is no Drug for "Loss of Funtion", Part II

      Did you figure it out?  After about 25 years of grinding pain from bulging disks, herniated disks, slipped disks (it's all the same) I'd have avoided surgery if at all possible.  For reasons within my control, which was merely gritting my teeth and doing the opposite of what many doc's used to recommend that being bed rest, I ignored pain and made it 25 years without recourse to surgery. My back used to heal on it's own.  Just like a common cold.  HUGE LESSON #1, IF YOU CAN AVOID INVASIVE OR SURGICAL PROCEDURES, DO SO!!

     Think about it, "Well Colin, we can just wait and a day and a little at a time, you'll heal.  In a month, you'll be back in the rodeo, bull-riding.  Right as rain, cowboy."...or..."Well Colin, first we'll stab you multiple times, cut a fillet from your butt, scoop out your disk, if we can get at it, dump-out the bone fragments, borrow some of your hip-bone, graft it all together, wait to see if the bone graft takes, fuse you so tight you may never twist again...oh, almost forgot, if the scars in your spine are too severe, you'll live a lifetime of pain because those nerves will clump together. Can't separate them after that; too dangerous. Law makes me say that stuff; most of the time things work fine, almost as well as leaving it alone."

     Of course, I exaggerate.  I didn't have a choice.  Calcified disk matter was sticking into my spine like a plastic cocktail sword through an olive.  I was falling on my head with increasing frequency, wetting my pants, and wondering just how fast those other cars speeding by me were going until I saw that I had slowed to 20 mph.  Couldn't feel a thing in my legs and feet, which is scary on I-95.  I had to go under the knife.  I still am mystified that after hours of cutting, cracking bones around and stapling me shut, they tossed me ON MY BACK on a hospital mattress.  The surgeon came to visit and asked, "How do you feel?", when I was still high as a monkey from anesthesia and industrial strength pain killers.  C'mon, what patient, in that condition, ever said anything but, "Great!!! I feel like a schoolboy with a piece of pie!"  This changes radically in the next few hours.

     Well, lesson #2 is even simpler.  I'll take any course of action, even if it hurts, to just feel a bit better than I feel now (and will for the rest of my life).  Shoot, that's about another Billion and a half seconds.  When you have chronic pain, often the most useful unit of measuring time is a second.  What's going to happen, anyway.  I'll hurt myself?  I hurt, severly, all the time. 

      Anyone who experiences, or has experienced severe pain will tell you that pain, like chewing gum, comes in a variety of flavors.  Intense or subtle strong and weak and all possible combinations.  Unlike the taste of gum, pain can change from numb and throbbing to the electric hot-foot in, you guessed it, a second.  Thank of the onset of a muscle cramp. 

     Judging by the comments and my emails, I wasn't clear.  I'm not a rash, pain for it's own sake maniac, but I will pay any price for the ordinary pleasure of running again, or breaking-off curve balls to see if I can strike my kid out.

     Wouldn't you?  God bless, Colin

The Gospel According to Granddad

Hi,

I found this funny and it is a real story, not a joke though it could sound like one. Having raised three boys I can understand how the mix up happened. We have grandkids now and I've learned this little boy is right. The gospel of grandpa reigns supreme.

I wish you all a good, low pain life.

Wanda

"I have a son who will be five in June, and it is a constant adventure. For example, on Sunday, we went to a local wildlife preserve with some friends, and it is about a 40 minute drive from the city, so we made sure everybody used the bathroom before we left. We pulled into the parking lot, at which point my 23 month old daughter became carsick, and so I was distracted. As soon as we stopped the van, my son leaped out the door, ran to edge of a small ditch, and dropped his trousers to relieve himself. We were busy cleaning up the mess in the backseat, so we didn't say too much about it. So we carried on our walk through the preserve, and as we reached the entrance gate again, where the washrooms were, we asked who needed to go, and he informed me that he didn't need the toilet. Those were his exact words, and, in retrospect, I should have paid more attention to them. We got back to the van and started to put the little ones in their carseats, when he ran up to the top of the hill overlooking the parking lot, and in front of about twenty highly amused spectators, dropped his trousers once again!  He looked like a fountain statue. I, of course, strongly protested, saying "You just told me you didn't need to use the toilet!" He then proceeded to inform me that it was okay because we were outside, so it was just like camping, and “boys don't need toilets when they're camping, Mummy! Granddad said so!” It can be hard to argue with the gospel according to Granddad!”

---

No virus found in this incoming message.
Checked by AVG Free Edition.
Version: 7.5.446 / Virus Database: 269.5.1/765 -

There's no Drug for 'Loss of Function' Part I

        Last Tuesday I hurt myself again, badly.  I push myself beyond the limits that pain receptors fire within my brain, past yellow warning lights, ripping through red lights, finally smashing through the "Bridge Out" road block, in hope to give myself a hearty, healthy cardio-vascular workout.  I measure my performance on a personal "speedometer": my heart rate.  If after 9 minutes on a reclining stationary bike I'm above 140 beats a minute, I gun the last minute in hope that I'll set a new personal best record, perhaps burning 125 calories over the previous ten minutes.  HOORAH!  It hurts like hell.  Know that, but so what, I'll have set a new personal best; I shatter old records but at a high cost: 3 days in bed. 

       This truly idiotic destruction of my previous records doesn't accelerate my recovery.  Just the opposite, it sets me back.  It slows my recovery, robs me of sleep delivering a bill payable in pain.  It slows my walking.  It causes me to lean heavily upon my cane (and breakthrough narcotics) so that I mumble, tumble, wobble, drool, and fall over.  Side effects from the narcotics dampen my memory.  New pain arrives in the form of back spasms, leg cramps, pinched nerves in my neck and constipation of my bowels.  Driving a car, even short walks are impossible in the recovery period.  The pain doc repeatedly warns me against this behavior, but I ignore him.  I've tried to explain that this is not something I do, it's who I am.

       A Gordian knot of trouble.  I'm not a masochist.  I hate pain.  So, why do it?

       My shrink set me straight on this point. I was right, this is who I am.  The key, the solution is for me to accept one simple fact, to unwind the knot with which I've lived my entire life...

• I HATE PAIN BUT WILL ENDURE IT AT ALL LEVELS UNTIL MY BODY REFUSES TO GO ON. I REACH POINTS OF COLLAPSE, ALMOST LIKE SHOCK, WHEN MY BODILY SYSTEMS SHUT DOWN.  BUT I GO THIS FAR IF THERE IS A REWARD IN MY BEHAVIOR FOR ME.  IF THERE IS A NEW PERSONAL "BEST" THAT I WEAR AS IF IT WERE A MEDAL.

• I will pay a price for a reward.  I will, and have, pushed through to physical breakdown if the prize is something I value enough.  I am the rat in a Skinner Box.
• The Pain Scale doesn't work for me.  I mentioned this in an early post where I described a conversation with my pain doctor when I asked him to explain if "10" was dead, or just shocked or knocked into unconsciousness.  He said "10" is the worst pain you've ever felt.  I told him I wasn't awake for that.  The conversation was like a chat between 2 people on mobile phones when both parties are between cells.
• My Psychotherapist explained, citing incident after personal incident from my life, that I don't experience pain as many other people do.  I often experience pain as simply the cost to reach a goal.  If I didn't see a prize, we'd probably view pain similarly.
• Thus the management of my pain today, pain without a prize has only 2 conditions: I have pain, or I don't have pain.
• If you've read this far, here's the pay-off for this 2 part article.  My specific crisis now is not just enduring a high level of chronic pain.  My crisis is different.  It is "Loss of Function"
• My lodestone is that I will, unfortunately, willingly endure all manner of pain to the point of bodily collapse if I believe that I can regain function.  A dangerous game, one worth playing.  One that I could lose.

       My shrink strongly urges me, at this point, to change "games".  He suggests one that offers a real prize instead of an illusory melodrama; functionality, but that which doesn't expose me to the brinkmanship of a high risk physical game.  I've used the word game in a formal sense in this article as it might relate to game theory, particularly tournament game theory in which one loss eliminates a participant from the game.  Perhaps, recovery without self-absorbed faux heroics.  God bless us all, Colin

One World

As I sit here in my nice suburban kitchen, listening to the sounds of the neighbor’s kids playing, I can’t imagine how the people in Virginia are feeling today. The tragedy that unfolded this morning is shocking. The loss of life, the injuries are too great to be imagined. As the next few weeks unfold, we will no doubt be inundated with reports trying to explain the tragedy, trying to put all of the violence into some kind of a nice, neat explainable event. But it isn’t explainable or understandable, is it? My college career was not shaped by tragedy or senseless killing. I have fond memories that I treasure and I’m proud of the person I’ve become. But what of the students at Virginia Tech? What will they remember, more importantly, what will their legacy be? The news felt like a slap in the face when I saw the report on CNN. I keep trying to wrap my head around this event and figure it out. It’s in my nature to explain things, to make sense of things. Otherwise I will just keep running over the events in my head and with no explanation coming, I will become very frustrated and I admit my faith in God is often shaken when thing like this happen. And then there is my health. I’ve been down lately, the pain has been a lot worse, I’ve spent most of the past 7 days in bed and sleep is down to about 2-3 hours per night. To say that I’m feeling sorry for myself, is putting it mildly. But then this tragic event happened and I am forced to admit, I don’t really have a problem at all. I think I’ll spend the evening putting my life in perspective and being very thankful and appreciative of all the love I have for my family and friends. I will vow not to take these things lightly, and I will thank God and my faith will be restored. Afterall, we are all members of the great tribe of people on this planet. It is truly One World and we all need to remember that. We are all together here. It is not about us or them or he or she or they. We are all of One World on this planet and we need to be reminded of that from time to time. Let’s all pray for the people in Virginia. Anne

My Curtain Of Memory

Hi Dear Friend,

Below is an article I wrote today. I’d like to know if it is OK this way. What I mean is does it get the message across that God can take someone in as bad of a physical shape as I’m in and use me again? That’s how I mean it. How I learned to play the piano, why I only play one way, why I had to quit, the bitterness of that and now I’m playing again on a limited but much needed basis. Maybe the whole post should be trashed and just use what I told you here. You know how women like to talk!! Get back with me because I won’t post it until you do.

Thanks,

Wanda

MY CURTAIN OF MEMORY

   One of my favorite gospel songs has a phrase that says, “roll back the curtain of memory now and then…” Today I am doing just that, rolling back the curtain of memory about my years of playing the piano.

    We lived a country next door to my father’s parents who were farmers. My parents were “city workers” so I spent a lot of time at my grandparents. I learned lots of things there including how to play the piano. My grandmother played by ear and could read shaped notes. She couldn’t read round notes. I don’t know how old I was when I started trying to play what I’d hear her play but I got fairly good at it.

   The problem with that still haunts me today. Even though I took years of piano lessons and forced myself to learn to play some very simple pieces of sheet music for recitals, I still play the way I did back then. Of course I’ve gotten much better at what I can play and I do know how to read round notes. I even took organ lessons as an adult and more music lessons. The last piano teacher I had taught me how to do more with the way I play church and gospel quartet music. Learning anything else takes lots of practice and discipline. I don’t mind the practice but I hate not being able to express myself in what I’m playing. I just never could learn how to express Bach or Beethoven. Besides that nobody I know wants to hear me play classical music.

    I was about ten when I played the piano for church the first time. The pianist who played the first song before Sunday School wasn’t there and the church pianist wasn’t on time either. The Sunday School Superintendent asked if anyone else could play. My mother spoke up and said I could. I remember playing “Bringing In The Sheaves” in the key of C. That was the beginning of my music career.

                                                                                                                                                                     On March 20, 2000 my life as I knew it ended. I have Systemic Lupus. This is an autoimmune disease in which the body’s immune system gets confused and thinks normal, healthy body tissue is an invader such as a germ or virus and sets out to kill it. It can attack anywhere in the body without much, if any, warning. On this day it was my colon that got attacked and I lost so much of my body’s fluids that I went into shock. My daughter-in-law found me unconscious and got help. I was in a coma for eight days and on life support for part of that time. I have no memory of these events. I went to bed at home and woke up in this strange place. I was in shock for an extended time and the doctors had no idea what shape I’d be in when/if I woke up.

    I’ve had to use a walker ever since this happened. I use one with wheels and glides. I have a wire basket attached to the front to carry things I need.  I can’t stand up unless I am holding onto something steady. I also have to use a wheelchair/power chair lots of the time now. I lived in a “brain fog” that took me to some interesting places when I slept. I wasn’t very aware of lots of things. I developed Myoclonus Jerks which would cause me to fall if I happened to be standing up or walking. I would fall straight backwards most of the time. I couldn’t get up by myself. Needless to say I had to have 24/7 care.

    One night around 10:30 my husband was watching TV and I was walking to put something down on the table. Suddenly I had one of the Myoclonus Jerks and fell. This time I knew something was different. I couldn’t move my right arm and the pain was so bad. He wanted to help me up but I said, “No, go call an ambulance”. I did not know a person could scream so long and as loud as I did when the paramedics set my arm for transport. I had surgery to put in a rod and pins to “fix” it. I had PT at home three days a week and I was getting nowhere with it. Then I fell again and re-broke it. This time the orthopedic surgeon put in a shoulder joint replacement.

    I never got back much use of my right arm. This ended my piano career. It ended just about everything I couldn’t do with my left arm and hand. I became even more dependent on others to take care of me. A special brace is now attached to my walker to support my right arm and I can use it to help guide the walker. The shoulder replacement joint got infected right after surgery. Good old staph but it wouldn’t go away. For two years I was on and off IV antibiotics at home. Insurance didn’t pay for this or for the sitters. In 2004 the joint replacement was removed. Now I do not have a right shoulder joint at all but I am much better off without it. My arm has improved lots but I can’t raise it. I can type, eat, sew, and brush my teeth. I still can’t comb my hair with it.

    In 2005 the Lupus launched an attack on my liver. This put me in the hospital, again. I was there for 10 days.

    When I left the hospital that time I started getting better. Very slowly, just bit by bit I improved. Actually God worked a miracle. I came out of my “brain fog” and I don’t visit strange places in my head anymore. I can eat again and have gained back the weight I lost.  But the best thing that has happened is that I can play the piano once again. The bad thing is that I got so depressed and I didn’t really know what I was doing and I gave my piano away. I can’t buy a new one so my church let me bring home the keyboard to practice on. Still it isn’t a piano. I want my piano back that my parents bought for me but it’s too late now.

    Now I can play the piano for Sunday morning service. This really tires me out and it does cause pain but it is pain that I gladly endure just so I can play the piano again and express my love for my Lord and Savior, Jesus Christ. This is a great miracle if people will just see it for what it is.

    I also play for the church quartet. My husband sings in it and has for many years. I was always upset when he sang. I got down right mad at God because I couldn’t be a part of that anymore. After years of playing piano for church I was back on the side lines.  We had another pianist so I wasn’t needed. Then I was too sick. I didn’t think God ever could/would use me again with the only talent I have and believe me it is one talent not ten like the good servant got in the Bible parable.

    Now, Praise God, I am able to play for the quartet and my husband and I are working together again. I can’t express how happy this makes me. The peace, the love, the memories—old and new—are bringing us closer together again. It’s like starting all over with a clean slate. We are re-building bridges that were lost while I was so sick. Quite often it is the little things that make a big difference. The touch on my shoulder; an unexpected hug; a wink; a smile; or a sparkle in his eyes. These are new and wonderful again.

    But for tonight I’m scared. Our quartet is singing tonight in front of a whole bunch of strangers. It is the spring choir festival at another church and several churches will be there with their choirs. I’ve never played before this many people and these people know music. Our daughter-in-law will be singing and she’s a semi-pro. The main problem is that I can’t hear the quartet unless they are right beside me because I’m almost deaf. Then I’ll have to be helped to the piano along with my walker and my navy tote that conceals as much of my supra pubic catheter drainage system as possible. Play. Then reverse the process. At least we’re supposed to be first on the program. I’ll let you know what happens and how I feel when I get back.  Wanda @4:30

    Hello again. It’s after the choir festival and I survived it!!!

    I was able to enter the sanctuary via the handicapped ramp leading into the front of the room. It was right beside the stage but it was the wrong end of the stage for me. I needed to be where the piano was not the organ. Also I had three steps to get up and there aren’t any handrails for support. The choir chairs had been brought down and put in front of the stage/altar area so that I couldn’t walk on the floor to get to the other side. I was helped onto the stage and I had to walk all the way across it to the piano. There wasn’t a thing or a soul up there but me and my trusty walker. I was looking down on a completely filled sanctuary of about 225 people. Thankfully they were busy talking and I don’t think many noticed me at first.

    I needed to warm up and get the feel of how this piano played so I got a hymnal and start to play very softly. That did get more attention and I was asked to play louder so I did. Then it was time to begin and our quartet came up to sing. They came over to the piano where I could see and hear them. We did just fine. I didn’t get nervous and shaky at all. I knew what I was there for and I did it. I was there to give praise to God as was the quartet and all the other singers/musicians. Everyone did just great and we had a wonderful time. I liked the applause but there was something I liked even better. When my feet were once again on the ground floor I looked up and saw my daughter-in-law, her mother and our mutual granddaughter all smiling and happy and beaming. They are the ones who were with me when the doctors said I was ready for Hospice care and they are the only ones in the building who really knew what this playing of one short song meant to me.

    I hope that all who read this will understand that God can and will use anyone for His glory if you are willing.

Wanda

Mea Cupla, Kathy

Dear Colin,
Are you glad you got back north in time for the cold front and snow? Right!!!I  I don't have endo but do have great pain from not only the rare,fatal (and dreaded by me) lung disease lymphangioleiomyomatosis  (LAM) but from old assorted injuries to neck, back, spine, surgeries and having arthritis and severe asthma and no cartilage in my knees. Yes, I'm a mess but God's mess and He's got to help me take care of it. I'm hoping to attend the world wide LAM conference next week. The few scientists studying LAM hold a concurrent conference and then we get to meet with them (or them with us) so they can "put a face" on the disease.
I just finished reading the abstracts for the scientific presentations and am scared to death (or nearly)  about the conference. If you want to look at general info is
http://www.thelamfoundation.org/LAM_Conferences.htm#professionals

Please pray for me and my family as we go to the conference. My attending will require me to completely face that I do have this disease, that it is fatal and that I HAVE to deal with those issues. Sometimes I can tell myself I just need to worry about the daily pain I am in (and aren't there those times you feel you can't take the pain anymore and would/should be dead?) from all the other injuries and illnesses and then I realize something else is killing me and I should fight to stay alive.  It's just another quandary God has presented to me and I sure can't handle it alone. I feel like the snake in the "having car trouble" pictures I sent you  -- out of place and with my guts hanging everywhere!  I have to remember God put me here in this place so I can't really be "out of place"  and that He will help me get home in His own time.  meanwhile I need Him just to handle the physical and emotional pain.

If you go to the conference site and click on abstracts and look on page 19 (out of 33 abstracts) it talks about the phsychosocial condition of lymphangioleiomyomatosis. it says essentially declining respiratory functions leading to respiratory  failure and death  leads to everyone with LAM changing  their role sand expectations in life and leads to depression and anxiety. No kidding? Almost everyone I have communicated with who has LAM is on at least one or two anti-depressants and one or more anti-anxiety drugs - except for me. Why God has protected me so far (even though I fear sometimes I am loosing my grip) I don't know. However, I am very thankful and aware it is because of Him not because of something  (other than Him acting) in me. Please pray I can hold out. Being in pain leads to enough depression just by virtue of the changes it causes in my life (as you certainly understand.) Knowing I am living with and may die from this gruesome disease is more than I can handle right now.
I hope this finds you and your family well and rested. It was a terrific idea to get away. The LAM conference is not going to be a fun "away" for Bob and I but may lead to additional closeness if we can both open ourselves to the learning opportunities present at the conference. (It will be one of the few times we even make it to the edge of town. We don't ravel at all.) Pray for Colyn too that she can deal with her health and anxieties until we return. I'm not sure what God has planned but I am open to the possibilities. Or rather, I'm trying to be open to the possibilities. Please pray I have some success. 
I've got several other things to send you that you might enjoy. Take care and God bless. Breathe In Peace Kathy

Norwegians Keep Their Clothes On

Sex?  You have got to be kidding.  We have AA and you are thinking about sex,  what are you, some kind of normal man or something???? 

Physical love isn’t what it used to be for those of us with AA (adhesive arachnoiditis) or any other debilitating (chronically painful)  disease.   When I was first diagnosed with AA, I was in screaming pain.  My meds weren’t at a level necessary to alleviate my pain. Sex??!! Typical, Colin, typical.

When I am in a lot of pain, I don't see myself as attractive.  I fix my hair and put on my makeup each morning and I try to dress in clothes that are flattering.  I’ve actually purchased specific outfits because I thought they would look good while I was lying down. Instead of “Dress for Success ” I am “Dressing For Disability”. Seriously, I have put time into considering what looks best while I’m lying down. How nuts is that?

Still, no matter how hard I try, when I look in the mirror all I can see is pain.  I’ve never thought of myself as sexy, but  I always thought that I was good looking.   However, when I am in a lot of pain,  I can’t see beyond what is behind that look in my eyes, unrelenting pain and frustration; not having the life or look I had before.

I learn, every day, to accept limitations caused by chronic pain. But I believe that there are other things that this disease brings to our lives.  Almost like a new benefit we didn’t have before.  I believe that there is something good that can be gained from this health condition.  I need to be open to  change and accept it as a new part of my process of coping with this disease.

When my physician brought up the fact that a decreased libido is normal for someone with chronic pain, I laughed out loud.  Decreased libido makes it sound like all I needed to do is increase my libido.  That should be simple right? Is there a pill for that, or something, maybe some new kind of therapy.  Take a pill and I'll be cured. How about peach pits?

I don’t think so.

As a woman, a lot of my feelings regarding physical love are in my head, literally.  I need to feel sexy and desirable before I can completely give myself to my husband.  If I don’t feel that way about myself, how can I expect him to feel that way about me?  I mean, pardon my frankness, but I don’t want to just lie there. I wonder, would that be good enough for him? I know that wouldn’t be good enough for me. What would be the point of making love if I wouldn’t enjoy it?  I’ve always had what I consider to be a normal, healthy sex life. But, just like everything else in my life,  AA has screwed this up too.  (Pun intended).

So how do we fix this??? 

Well for starters, I'm not even considering what you used to do. Instead, I'll focus on what I  can do.  Maybe you can’t do everything you did in the past (why do I suddenly feel the urge to wink), but perhaps there is something new I can do now.  I think the best way to overcome this problem is to talk about it.

I'm frank with my partner, I talk to him and tell him what I feel and what I don’t feel.  Bluntly and honestly.  I  tell him that it hurts, that it never stops hurting. I explain that sometimes the hurt is right there on the surface and too painful to feel anything else. Making love is out of the question when I feel like that.

I know that over the past few months, I’ve told my husband many times that I’m in too much pain to even consider making love.  He is very understanding and he is also afraid that my pain gets worse when we make love.  I’ve assured him that is not true, but I know that it worries him.

When I tell him that I don’t want to make love, I feel very guilty. We talk about that too. I want to make sure my partner knows that this is not about him, it’s me or it’s AA.  If I don’t discuss these issues with him, he may think that he is the cause of the problem. That isn't true, and I don’t want that to happen.

Other times, the pain is playing in the background like a really annoying song on a Muzak station. You know the song and you can’t tune it out, but it’s tolerable and it doesn’t interfere with what you’re doing. Those are the days you wish would last forever. You almost forget you have AA and for the most part you can enjoy the physical expression of love with only a minor distraction.

Since we started discussing this problem, things have gotten much better.  There are still times when I have to say no , but there are other times that I am ok with it and luckily most of the time I thoroughly enjoy myself.  It’s great to be able to joke about it with him and know that this is not something that is too awful to discuss or too sensitive.  The more we talk about it, the better our relationship becomes.

Our sex life is no longer about having the perfect body anymore or the prettiest lingerie.  Those were the types of things that worried me a lot in the past few years.   Like a lot of other things in my life, those things seem so silly now.  How could I have wasted any energy worrying about things like that?

Today, right now, making love is about showing my husband that I love him.  Going through all of the physical problems I’ve had in the past few years has made our marriage better because we deal with the problems together instead of ignoring them or pretending they are not there. I want  my husband to know that I love him more each day.  I may not always be able to show him by making love, but I’ll sure try. 

Although I might not be swinging from a chandelier anytime soon, that’s ok. I’m Norwegian, we’re shy folks and don’t like to leave the lights on anyway.

Anne

"Man Smart, Woman Smarter

      Robert Palmer sang a cover of an old calypso song about 30 years ago entitled, "Man Smart, Woman Smarter."  It's hokey and fun, but there's a refrain in the song that stabs my heart like a knife:

Little boy sat down and cry

Old man passin' ask him why

He say, "I can't do wha' the big boys do."

Ole man sat down, he cry too.

Ten years later, Joan Armitrading, in the song,  "Love and Affection" sang:

"I am not in love,

but I'm open to persuasion." 

and in the same song,

"If I can feel the sun in my eyes and the rain on my face,

Why can't I feel love?"

    I don't know about you, but ouch to all of these quotes.  Dammit all, I pray for God's love; My wife's love; my kids love...but I'm so pissed.  I'm so mad.  I'm only 47 years old.  I want to hit fly balls to my son, or teach him to break-off a curve ball.

     I want my daughters to know that with dad, it's all okay.  I respect their privacy and know that they are no different than I or their mother was.  I hope I'll always respect my kid's choices; they're all now reaching the age of decisions.  Lord God, please keep me on the path of not holding my kids to a standard I never met.  Help me to always love them no matter what their life choices will be.  And God, more than anything else, please give me the strength to fight had to be the husband my wife deserves.

     Many kind women, starting with my wife, tell me over and over that physical love isn't the only expression of love.  Ladies, thanks. But, you can't imagine the deep embarrassment and shame we guys, and I don't speak for all males, just me I guess, feel when we can't love in the perfect way that we were once able to do. Well, I just want things to be the way they were. That's it .

     I hate to snivel. I hate to speak publicly about private stuff. I post because I know you understand that if I don't open my mouth, these thoughts will pitch a tent in my head, living rent free.

     Please share what you will, if anything at all.  I don't seek your private hopes, experiences or fears, though you can share whatever you want on this site. Please let me know if your comments are not for public disclosure.  Also, I will respect everyone's anonymity unless told otherwise. I don't want to put something up on a comment board that doesn't belong there.

     I know I'm not alone. Many, many people have written to me privately about sexuality and pain.  Many say it's worth the pain.  Straight, Gay, Unmarried, Married together or alone: it's all the same for many of us. It's the small steps that that you take that may help others the most. 

     Many other people object to this type of public comment. It's not my intent to shock or disturb anyone.  But, I'll say it again, if you brave the pain of sitting to write something that's bothering you, I'll publish it.  I will however quash the mean-spirited, nasty or vicious attack type note that is intended to "correct us all" or deliberately hurt someone.

     Just knowing that someone else cares is probably the biggest help of all.