Apr 7 to Apr 20, 2014

Mon Apr 7^th: Well Monday was the same as usual after no BM the night before. Sitting on the john for a while with little success and on with the Depends that I didn’t need. Was all toned up. And had that pain in my lower right tummy above my appendix. It is where the ascending colon meets the transverse colon. The pain is almost like a cramp. As you know I am on a ton of laxatives. When I was constipated we increased the number of Softlax to 6 pills a day as  we were told that it is just mineral oil the helps thing slide through. It isn’t, it is a laxative that contracts that irritates the bowel to make it contract. It was very irritating....grrrr. The nurse from Parkwood had called after they had gone over my laxatives. Here’s what I’m taking: 2 teaspoons of Restorolax, 3 tablespoons of Milk of Magnesia, 6 Softlax, a tablespoon of lactulose every other day and 2 Senokot. The nurse recommended that I up the Restorolax to 4 teaspoons as it absorbs water into the stool and drop the milk of magnesia down to 1 tablespoon as it neutralizes the acid in my stomach. 

The pain in my bowels may be from the irritants, Senokcot and Softlax doing their job. That visceral pain is causing my muscle tone. We are dropping all the Softlax, lower the milk of magnesia and stopping the lactulose. Haven’t noticed any difference yet but we’ll give it a day or two for the intestines to settle down.  Perhaps the scope will show what’s going on in there.

Tues Apr 8^th: Been off the Softlax for a day and a bit now. Haven’t noticed a lot of difference in my tone. My tummy still hurts. The bowel may still be irritated and that may take a few more days to settle down. My abdominal muscles are very tight and it is sometimes difficult to differentiate between the abs and the colon but it sure feels like the colon is still tight. If this is too much info, skip the next couple of sentences. During and after a BM I can actually feel my colon contracting. It feels like a big cramp from the right side across to the left side. In a normal person peristalsis starts the colon contracting on the right side and a ripple of contractions/relaxation moves along the colon forcing the stool ahead of it. Dr. Steen thinks that my whole colon contraction but the relaxation doesn’t happen for minutes or sometimes hours later or maybe the whole colon contracts at once don’t really know but something is cramped up in there.

The Softlax and the Senocott irritate the bowel to start the contraction and if you take them for too long, the bowel gets lazy and doesn’t contract on its own and that’s when impaction starts. There is a very thin line between starting and stopping bowel irritants. I took Senokot while in the hospital and ever since. I was impacted in October and increased the Lactulose and Softlax to help everything move and it worked.  We will try some combinations and see what works. We’ll see how everything works with just the Senokot.

No bike riding but a walk of about 20 feet before bed and 10 sit to stands and 10 shallow knee bends. It’s a real downer as I can feel my legs getting weaker. Especially the left leg can’t pick up the toe as well. Trying to work it as much as possible in bed and when sitting in the chair. I did manage to sit up to get out of bed a couple times. Haven’t been able to do that for a while. Oh yes the BM  went well!

Wed Apr 9^th: Well, a whole day without Softlax. It feels like there is a little less tone just above my hips. It is amazing how much more positive I feel with just that little gain. The ol’ mind is a strange thing. Speaking of the mind we have started reducing the olanzapine slowly as it did nothing for my tone. 

Did go to the pool today as the legs are still very tight. We’ll see about tomorrow.

Oh yes, some good news, Darcy gave me $500 for Christmas to play on the stock market. I now have, wait for it...$812, which is a 62% gain. How’s that for picking ’em. Now that I mentioned it, it will drop tomorrow. I expect a drop as a lot of investors will be taking their profits. I think I’ll hang in there a bit longer. The company makes special chemicals used in solar panels and LED lights, and both those industries are taking off. We’ll ride it out for a while. If I make money Darcy may give me another $500 next Christmas.

At bedtime, after my BM, I walked about 20 feet and did 10 or so sit to stands. I am feeling better. Got into bed at about 8:30 and at 5 to nine, I know the time as the PSW was just leaving. I had another BM. Onto the commode and back to the john. Can’t figure that one out. Perhaps if I didn’t walk or do anything it would have stayed in and perhaps that is how impaction starts. I think I will do a bunch of sit to stands before the suppository goes in and that might get things moving. 

Thurs Apr 10^th: Thursdays are good the PSW comes at 6:30 and I am showered and ready to go at 7:30. Felt really good, no pain in the tummy and my waist was not toned. The back and legs were tight but less so than last week. Did an hour workout in the bed and went to the pool. First time at the pool in 2 and a half weeks. Took it easy, floated around for a short time did some stretching, side walking and just one 15 m walk to the deep end and just 10 minutes in the deep end kicking my legs around. 

Thought I took it easy. A couple of friends dropped around for a chat. Feeling ok, but then my nose started stuffing up and I felt very sleepy. Went with Darcy and the dog for a walk round the crescent. So nice to get outside. The first time outside since last fall. Nose plugged up and dry mouth. Supposedly these are dysreflexia symptoms. Had them last night and Darcy took my BP and it was 126 over 79, quite normal. My legs feel tingly and burny but that didn’t start until about 3:30 PM.

Guess what no BM. The pool and some sit to stands before the suppository went in probably tightened everything up.

Fri Apr 11^th: Gotta stop talkin’ about BM’s and colons etc. but unfortunately that is my reality right now. I’ll limit the description. Got Darcy up at 3 AM and to be brief I didn’t make it to the bathroom in time.

I thought when we stopped the Softlax and went to decreased laxatives the ol' bod would start to loosen up. It did loosen up for a bit around my waist but then the pool tightened everything up again grrrrr. Writing this blog sitting in the chair is painful. The legs are tight/burny, the ribs are sore because the muscles are very tight. Just don’t know what to do. If I sit around anymore I’ll soon be too weak to walk...hmmm...guess that is a little bit of self-pity. No we’ll figure something out, just not tonight!

Sat Apr 12 to Sun Apr 20^th: It has been and up and down week. Some days I’m so toned up I can hardly move. It is difficult to walk with a back that is very tight. I keep getting a stuffed up nose, ringing ears, numb ears, tight neck muscles and a very dry mouth. But I think we are starting to figure things out. Any pain that I feel gets translated into something else. When the pain impulses go to the brain it would know what to do with it. Now the pain impulses get to the damaged spinal cord and get transferred somewhere else. When I have a full bladder, I get the stuffed up nose, dry mouth ringing ears etc. If I have a pee they go away sometimes for a short time and sometimes they go away for hours.

Another thing causing pain is my rectum. After a BM, it hurts for hours and my nose stays plugged up and that whole syndrome of effects starts. Preparation H helps a bit at calming it down. I really need the scope to figure out what is going on up there. Supposedly the Dr. is working on getting me the scope. Even sitting here in the afternoon writing this, my rectum hurts and the ears are numb and ringing. I’ve been trying to do my hour workout for my legs and arms every day. Haven’t got back to the pool this week. I am walking every night from the bathroom across the kitchen, about 20 feet. Then the left foot gets tired and when I can’t lift the toe up, it’s time to sit down. 

Another interesting thing has happened a couple of nights. I have the BM, do the walk, do some sit to stands and then it’s back to the can to finish off what I started. Since I stopped using the 6 SoftLax, daily, the pain in my lower right abdomen has almost disappeared...yeehaw! I think we have got the laxatives figured out as everything is working quite smoothly now...lol!

With the stuffy nose at night I can’t use my CPAP and I haven’t used it for months. Perhaps that is why I fall asleep at the computer or at coffee with the guys. Or several of the meds I’m taking cause drowsiness or a combination of both.

Since I have been doing the weights on my right arm it is almost back to normal. I can brush my hair, well almost, someone has to get a spot at the back of my head, but I can now brush my teeth easily. At least one thing is working. Really need to get back to the gym and get on the leg press machine and up the mileage on the bike and start walking further. I know I must do it slowly. Got 4.8 k in this week sure is down from 25 to 50 a week I was doing 3 months ago. Another goal. 

The goal now is to get back into therapy. I have lost a lot in the past month and must build up again slowly to be able to do therapy again. Need to get into the pool and walk there and get the legs stronger. 

Had some outings. Went to Pinecroft with Jack and his wife, my friend from Parkwood. It is good for Darcy to talk to Jack’s wife who has the same difficult issues as she does.  Jack is a little more mobile than me. He can walk with a walker or canes and has the use of both arms. We arrived at Pinecroft and we had only the back for the wheelchair, no cushion. We always have a wool blanket in the car, folded it up and it made a usable cushion. It was lower than the cushion but worked very well. I don’t think my knees would have fit under the table if I was on the cushion as my knees just fit under and the blanket was about 2 inches lower than the cushion. I was bad, lol had cherry cheesecake, but I didn’t eat all the whipped cream or all the cherry stuff. That’s a lot of bike rides to get rid of that. Met one of my nurses from Parkwood, took me a minute to remember but I even remembered her name, Cindy, a very nice lady! At Pinecroft I had 2 and a half cups of coffee and Darcy claimed I was very chatty. I will admit I was singing along with the radio which I don’t normally do. Had coffee with the guys a couple of times. Seems all the practicing they did over the winter didn’t help their golf game very much.

Missed a few things, haven’t been to karate class for a month. Just seemed every Saturday I was very toned and sitting in the chair for an hour+ wouldn’t have helped. Saturday, I  didn’t go to class so I’d be ready for Kelly’s 50^th (not my Kelly) birthday party at night. Well things didn’t work out in the BM department and I missed the party as well...grrrrrr! 

How am I Feeling?

A lot better than the last report. I think we are onto something with the bladder pain and the intestinal pain. Need the scope ASAP to see if there are any issues up there. Once we get the bladder and the intestines figured out perhaps that will resolve all the excess tone in my legs, arms, back and tummy. Guess that last blog got some people concerned as a couple of old rugby buddies came from Brantford for a visit. Ken a cyclist from Ancaster came for a visit as well. He brought Darcy some flowers as he knows how hard she works as he is looking after his elderly parents, 

Thanks for listening...

Mar 17 to Mar 30, 2014

Mon Mar 17 to Sat 22^nd: Rather than bore you with the day to day details this week has been a very tight week. Started out with tight, back, arms and legs. The nose gets stuffy and my ears ring and the eardrums vibrate which is uncomfortable. Even swimming was a problem. The leg muscles are so tight I have to work to bend and straighten my legs. I walked from the bathroom to the bed a couple of times. That really tightened everything up for bed. If I don’t move at night I don’t feel the tight muscles until I move in the morning then bam, it’s all back again as soon as I move. Went to coffee one morning and sat in the manual chair for 1½ hours. Got home and the back pain was at about an 8 out of 10.

Since I was getting so tight/toned, I decided to restart to nabalone, again which is synthetic marijuana. We took it out because we don’t think it was working so we put it back in on Friday as I getting a little desperate about the muscle tone .Took 1 gram tablet Friday at noon and at night and then one at breakfast and at noon on Saturday plus a ‘relax’ pill and some hydromorphon. Saturday was a very strange day. I was tight/toned when I got up in the morning. I felt more tingly/burny than usual. Did karate class and tightened up some more after a very short walk. When I got home I did the stretching drills in bed to try and loosen up. It didn’t work. At about 2 o’clock I started to feel different. My ears started to ring louder and vibrating ear dumbs picked up and it felt like all my muscles were being pulled tighter and tighter. My eyes also started to go in and out of focus which made it hard to read the screen. Had supper and ate but I really wasn’t hungry. Still feeling strange after supper and as I write this blog the print is fuzzy. I have a strange feeling on the left side of my head, not really a headache just feels like some pressure there. It’s not a stroke, I stuck my tongue out and it came out straight, so no stroke.

All my muscles are tight/toned and feel like they are being pulled tighter and they are tingly/burny  particularly the legs above and below the knees. Wish I had something good to report but not being able to any exercise has really got me down, no gym for 2 weeks, and no bike and now I won’t be able to go to therapy. Okay, I just feel like shit. Going to bed catch you in the morning.

Sun Mar 23^rd to Wed Mar 26^th: Felt better in the morning. Still so tight/toned that I’m not going to the pool or riding the bike or walking as it seems that any exercise tones me up. It is particularly aggravating because it tightens up my rectum and I can’t poop. If I take enough pain pills to relieve the pain, I get very constipated. Don’t know what’s worse, constipation or pain. Perhaps, I should try the bike for just 3 minutes to keep some leg muscles working. I am finding that since I am not doing exercise and not using my legs by the time I get into bed at night my feet are like ice cubes.

Yourleg muscles help the blood circulation in your legs. When you walk or stand the muscles contract and then relax. This contraction and relaxation helps pumps the blood to and from your feet. Since I am not moving and the muscles in my legs just contract they don’t help move the cool blood away from my feet. I get ice cold feet. No muscle contraction/relaxation in the legs = poor circulation. In the past the right foot has always been colder than the left foot, now for some reason it has switched. Lying in bed seems to warm them up, guess with the legs lying flat it allows the warm blood to get down there and the cold blood to move away from the feet with no help from the muscles.

Monday, I had the ultra sound on my stomach and got a Dr.’s appointment in the afternoon. The ultra sound didn’t show anything abnormal. I had extensive blood work done and it all came back normal. The Dr. doesn’t know what to do with me or what to look for. He said he’d talk to the Dr. at Parkwood. I have the uneasy feeling that this is the progression of the condition. Exercise causes muscle tone. 

It’s even tough going for coffee and sitting in the manual chair for an hour or so. It is very hard to speak has I have trouble sucking in enough air to speak and by the time I get home I am a real mess.

After lunch Darcy and I did about 20 minutes of stretching and used the back massage vibrator on my back and legs as vibration is supposed to relieve muscle tone...2well it doesn’t, at least not yet. We’ll do it again around 3. Another issue is my mouth dries, out. It’s not from breathing through my mouth but my face and ears get tone up and my salivary glands don’t make spit anymore and that can last for several hours. I much prefer the old hangover day’s dry mouth to this.

I am painting and I am going to finish this one come hell or high water. My biggest complaint is that I haven’t got the tone correct. The dark areas are too dark and some of the light areas are to light and some are too dark. I use a lot of colour straight from the tube which is a no-no. I haven’t figured out how to correctly tone colours down with white paint. I don’t quite have the colour knowledge to tone colours up and down with other colours. For example, what colour do you add to yellow to tone it down? Can’t add white as that makes it brighter. Guess practice makes perfect. I do have trouble doing detailed work such as drawing tree trunks, branches and any other fine details, such as adding fine highlights etc. As they say some of the best art is actually from making mistakes, so I’ll have some very good pieces...lol!. Given the muscle tone, I can only paint for an hour or so and that’s not long enough to get the right side of the brain, the creative side of the brain tuned in. The painting is about 75% finished. I’ll keep plugging away at it. 

Mar 27 to Apr 6

I really don’t like what is going on every day my muscles are in spasm. My legs, arms, back and stomach are all turned on. The pharmacy changed some the drugs from brand name to generic. We will try to get them changed back.  Generic drugs can be as low as 90% of the brand name drug. I take 120 mg of baclofen daily. That means I could be missing up to 12 mg of baclofen a day. Only about 1% of the oral drug actually gets through to my spinal cord so I need all I can get. We’ll get the Dr. to straighten that out. 

As mentioned, my rectum tightens up and I can’t fart. There is a buildup of gas which causes pain which causes the muscles to tighten up and around and round it goes. If I exercise that is any exercise, walk, ride the bike or go to the pool it tightens up everywhere. After just 3 minutes on the bike my rectum is so tight I can’t poop at night which means I have an intestine full of poop that causes pain and I tighten up more.

I have had to cancel therapy because their goal is to get me walking and I have so much muscle tone, I am unable to walk.  

I saw the Dr.at Parkwood on Monday, Mar 31. I had the Botox put in my arm and then had my 6 month checkup. I was in bad shape, very tight/toned everywhere. He hooks me up to an oscilloscope to tell when the needle is in the right spot. There is a lot of static and he mentioned that if it was on his arm it would be silent. The static is from my muscles being on all the time.

We talking about my muscle tone and what could possibly be the cause. As mentioned muscle tone or muscle tone overflow is usually caused by something visceral...intestines, bladder. Whenever I have gas or can’t poop I get a pain in my abdomen about where my appendix is. Now here’s a great example of this. On Thursday night I didn’t have a BM. I was a hurting puppy all day Friday. 

Tight/toned everywhere and a pain in my low right tummy. Put the suppository in as usual and went for a poop. It wasn’t a real big one considering it was two days accumulation. I know this is too much info but this my reality. There was a lot of gas that I had to force out.  Thought I was finished and got into bed. I was still very tight and very uncomfortable and had a sharp pain in the lower right tummy. Took some pain meds but that didn’t help. My nose was still plugged up and my mouth was dry. At about 10:30 when Darcy was heading for bed she rubbed my lower stomach in a clockwise direction which is supposed to help the bowels work. Well it did work. After about 5 minutes I had to go on the john and had another BM. The pain in the tummy subsided and I was able to get to sleep.

Back to Monday with Dr.  Mentioned the bowel problems and he said he’d send a note to my family Dr. to have a scope to see if there is any problems up there. Geesh, can’t wait for that. The other thing we talked about was a baclofen pump. Since about 1% of the oral baclofen gets to the spinal cord they would put a pump in my tummy with a line running around to my spine to but baclofen directly on my spinal cord...yikes! I would go to UH and before they put the pump in they would inject various amounts of baclofen into the spinal cord to see what dose would work. Once the pump is in they would adjust it to the right amount. The pump holds enough for 2 to 6 months.

The other thing we talked about was my back pain which could also contribute to my tone. He suggested that I have some steroid injected into the facette joints in my spine. Those are the little joints between the vertebrae.

The other grabbing at straws thing we did was to do with olanzapine which I started in the hospital for depression. We took it down slowly as you can’t go off it cold turkey. It stopped the last week in February and that’s when I started to tighten/tone up a lot. Did some google research and found that in a study of 12,000 patients olanzapine stopped muscle tone in 29 of them. Not a big number but I may be in that group. I am back on 2.5 mg of olanzapine for 3 days now but no noticeable effects.

I’ll have the scope and the steroid injection into the back and if the scope doesn’t show anything wrong with the bowels I guess it’s give the baclofen pump a try.

It is getting quite boring as I can only ride the bike for 5 minutes a couple of times a week. Haven’t been in the pool for 2 weeks. Talked to Stephanie, the physio at Parkwood and my therapy is on hold until we get this thing sorted out. Must be careful with the muscle tone as the muscles can pull so tight they start to pull the ligaments off the bone...don’t want that to happen.

Oh yes, we went to Motion Specialties on Monday, after lunch at Cora’s to see what they can do about my manual chair to make it more comfortable. He moved a few things around and put a lumbar wedge in the back of the chair. When I go for coffee in the manual, I can’t sit for very long as my back starts hurting a lot. Right now I am sitting in the electric and we use the same back and seat from the manual. We moved the wedge a bit and my back is just killing me right now. Darcy is downtown, I will get her to move it or take it right out cause it sure ain’t working in this position. The chair fitter from Motion Specialties is coming on Monday to set me up in the power chair.

Sun Apr 6^th: Not a good day. Couldn’t get comfortable in the chair. Played on the computer and painted a bit. At 3ish, rode the bike for 5 minutes at tension 2 for 1.2 k and a 3 minute cool down at tension 1. A far cry from 40 minute rides at tension 5, 6 and 7 and 6 minute cool down at tension 3.That short ride tightened me up so much that I couldn’t have a BM at 8 o’clock. Hopefully it will all come out alright in the morning... 

How am I Feeling?

Like shit...but Darcy and I may be onto something. Tell you on the next blog.

Thanks for listening...