On Friday, I lay on my back and we punctured my toes, the inside of my cheek, and under my tongue to bleed me with a large bore hypodermic needle. Then we focused on my neck area.
She also gave me the formulated Chinese herbs I had been waiting for in a pickle jar with the instructions to take twice a day after eating, morning and evening. They are coarsely ground and look kind of like sea oats. To be sure that I wasn't allergic, she asked me to start with a teaspoon Friday night, and then a heaping tablespoon for each subsequent dose if I wasn't allergic.
She warned me it wouldn't taste good, and it was okay if I mixed it with orange juice. It smelled horrible, and tasted significantly worse!!! I didn't have any OJ Friday night so tried adding to cranberry juice. It was lumpy, smelled terrible, and I had a terrible time swallowing it. It took me about 15 minutes to work up the courage to try it. I ended up with whole pieces of bitter and pungent herbs in my mouth and I actually vomited part of it back up it was so terrible.
Saturday morning I took two loads of stuff from the basement to the Salvation Army and got some OJ on the way back. It was better when I mixed it with OJ as she suggested and ground it up in my NutriBullet, but I still didn't have the liquid/herbs mix correct, so there were chunks left at the bottom of the glass that I couldn't swallow and stayed in my mouth and almost made me throw up again.
Fortunately, in a few days I have gotten better at the consistency and quantity of juice that is required to grind it up in my NutriBullet and get it down quickly and in a single breath. If I have to come up for air and then swallow the rest of it, the taste is horrendous. I told Kim on Saturday that it was like trying to eat vomit! I now have a glass of water and some mouthwash standing by to get the taste out of my mouth as quickly as possible. The smell when I open the jar doesn't make me gag anymore, so I guess I am adjusting. I will finish the last of what she gave me tomorrow morning and she will have more for me when I see her tomorrow.
On Monday, I lay on my stomach and we did the "mosquite bites" procedure on my upper back, where she jabs me very quickly many times with a regular hypodermic needle to get my back to bleed. I could feel the rivulets of blood on my back and some ran down the side of my neck.
She followed this up with heavy duty suction devices and left 3 large "pepperoni" marks on my back, two on the right side of my spine and one on my neck. They hurt a lot worse today than they did yesterday. Then she had me flip me over on my back again, worked on my neck to try to affect my speech, swallowing, and jaw muscles, then pricked my fingers, and vigorously massaged my ears to affect all of the acupressure points.
No noticeable differences yet, although my swallowing seems slightly better. It is still taking me longer and longer to get through a meal. Hopefully after a few weeks of being on the herbs and the intense acupuncture we will start to see a difference! Keep those prayers coming!
Tuesday, September 30, 2014
Failure to Launch!
This post is a difficult and emotional one for me to write.
Melanie and I rescheduled our tandem skydiving to this past weekend. We were excited! It was beautiful weather, warm, great weather for a jump day! Mike at the Maytown Sport Parachute Club instructed us to show up at noon. We were there on time, and it wasn't very crowded at noon. John took us right into the classroom to watch a video about the risks of skydiving and to sign our lives away - I think there were probably close to 50 paragraphs we had to read and initial indicating we wouldn't sue in case of accident or death, and our heirs wouldn't sue either.
I gave Mel the opportunity to choose whether to jump first or second. She chose first, afraid that if she waited she might chicken out. She put on her jump suit with John and went through the drill of how to get out of the airplane and what the videographer Mike wanted her to do. After about a 30 minute wait for others on the manifest to jump and refueling the plane. Mel, John and Mike boarded and went skyward. About 12 minutes later, we saw them overhead exiting the plane at 10,000 feet, tine specs. Then we saw John's drogue deploy to slow them to 120 mph (instead of 170mph) and Mike circling them taking video. After a little less than a minute, John's chute deployed and Mel and John floated to earth. Mel got to steer the parachute and they did a lot of tight turns that she said were a lot of fun. They landed without incident and Mel was all smiles.
While Mel was in the air, Chuck and I suited up and Chuck walked me through what was expected to get into the tandem rig and exit the airplane. There was one flight manifest between Mel's jump and mine.
When Mike got his chute repacked, he walked over and talked to me about the video and what I should do when we were freefalling. We waited for another manifest in front of us to jump and the plane to refuel, then it was our turn. We had another lady with us in the plane who took a "short jump" at 4,000 feet. She looked like she was in her 60's, and she indicated she had jumped about 6,000 times since she started in 1970.
It was a breath of cool fresh air when they opened the door at 4,000' feet and she jumped. They closed up the door and we started our climb to 10,000 feet. It takes a while. The scenery was beautiful!
I made a mistake when I put on my jumpsuit. Due to ALS, my mouth alternates between too much saliva and being totally dry. I remedy the dryness and stifle the urge to gag by sucking on small sugar free lozenges. I had quite a few with me, and I put one in my mouth before I got my jumpsuit and tandem harness on. However, I neglected to plan ahead, and having waited almost 30 minutes with my jump suit on before boarding the plan, my lozenge was gone shortly after the lady jumped and I had no more at hand - they were buried in my pants pocket and inaccessible. Maybe if I had a drink before I got on board I would have been okay, maybe not.
Normally, this wouldn't be too bad, but with my heightened excitement (okay, I was appropriately scared) about jumping out of a plane, I started feeling like I was going to gag on our climb to 10,000 feet. That happens to me fairly often these days, but the lozenges work well. Unfortunately, I couldn't access them in my pocket with my harness and jumpsuit on. I started gagging around 8,000 feet and thought I might vomit in the back of this small plane.
Chuck was concerned and told me if I had to vomit to do so in my helmet - they don't carry barf bags like a commercial flight and it would be a real mess and ruin everyone else's afternoon if they had to smell it on their ascent after my plane ride. I didn't barf, but it was a near thing. I felt like I was starting to get some control back as we approached 10,000 feet and felt I could exit the plane for the jump, but Chuck and Mike quickly decided that it wasn't worth the risk - for Chuck and for me. The jump masters take their life and their passenger's life in their hands for every tandem jump, and if someone is in distress like I was, it is always safer to abort and retry.
So, after fifteen years of waiting to do the deed and jump out of an airplane, I came very close, but failed to launch. My body let me down this time. Obviously, I was extremely disappointed, but I respect the difficult safety call that Chuck had to make. I was clearly in distress, and I have no doubt that he made the correct decision and credit him for doing so.
I was defeated and morose as we flew back to the ground. Chuck and Mike were very sympathetic, and Chuck told me several times to keep my chin up. We went back into the classroom to talk about what happened. They gave me every chance to convince them I could use the lozenges to control the gagging and was ready to go back up and try again, but I felt that I couldn't face a second disappointment if it happened again and I was concerned that even with a drink ahead of time and several lozenges it could still happen. So, I decided not to wait for a new manifest and try again that afternoon.
I am very happy that Mel succeeded and that she had such an incredible freefall and canopy experience. She said she would do it again and when I am ready she will go with me again. She should have her video later this week and I look forward to seeing it.
My third attempt wasn't the charm that I hoped it would be, but I know what to expect now and I hope that I have a chance to try again and am successful the next time. It was definitely a life experience and a learning experience, just not the one I expected.
Melanie and I rescheduled our tandem skydiving to this past weekend. We were excited! It was beautiful weather, warm, great weather for a jump day! Mike at the Maytown Sport Parachute Club instructed us to show up at noon. We were there on time, and it wasn't very crowded at noon. John took us right into the classroom to watch a video about the risks of skydiving and to sign our lives away - I think there were probably close to 50 paragraphs we had to read and initial indicating we wouldn't sue in case of accident or death, and our heirs wouldn't sue either.
I gave Mel the opportunity to choose whether to jump first or second. She chose first, afraid that if she waited she might chicken out. She put on her jump suit with John and went through the drill of how to get out of the airplane and what the videographer Mike wanted her to do. After about a 30 minute wait for others on the manifest to jump and refueling the plane. Mel, John and Mike boarded and went skyward. About 12 minutes later, we saw them overhead exiting the plane at 10,000 feet, tine specs. Then we saw John's drogue deploy to slow them to 120 mph (instead of 170mph) and Mike circling them taking video. After a little less than a minute, John's chute deployed and Mel and John floated to earth. Mel got to steer the parachute and they did a lot of tight turns that she said were a lot of fun. They landed without incident and Mel was all smiles.
While Mel was in the air, Chuck and I suited up and Chuck walked me through what was expected to get into the tandem rig and exit the airplane. There was one flight manifest between Mel's jump and mine.
When Mike got his chute repacked, he walked over and talked to me about the video and what I should do when we were freefalling. We waited for another manifest in front of us to jump and the plane to refuel, then it was our turn. We had another lady with us in the plane who took a "short jump" at 4,000 feet. She looked like she was in her 60's, and she indicated she had jumped about 6,000 times since she started in 1970.
It was a breath of cool fresh air when they opened the door at 4,000' feet and she jumped. They closed up the door and we started our climb to 10,000 feet. It takes a while. The scenery was beautiful!
I made a mistake when I put on my jumpsuit. Due to ALS, my mouth alternates between too much saliva and being totally dry. I remedy the dryness and stifle the urge to gag by sucking on small sugar free lozenges. I had quite a few with me, and I put one in my mouth before I got my jumpsuit and tandem harness on. However, I neglected to plan ahead, and having waited almost 30 minutes with my jump suit on before boarding the plan, my lozenge was gone shortly after the lady jumped and I had no more at hand - they were buried in my pants pocket and inaccessible. Maybe if I had a drink before I got on board I would have been okay, maybe not.
Normally, this wouldn't be too bad, but with my heightened excitement (okay, I was appropriately scared) about jumping out of a plane, I started feeling like I was going to gag on our climb to 10,000 feet. That happens to me fairly often these days, but the lozenges work well. Unfortunately, I couldn't access them in my pocket with my harness and jumpsuit on. I started gagging around 8,000 feet and thought I might vomit in the back of this small plane.
Chuck was concerned and told me if I had to vomit to do so in my helmet - they don't carry barf bags like a commercial flight and it would be a real mess and ruin everyone else's afternoon if they had to smell it on their ascent after my plane ride. I didn't barf, but it was a near thing. I felt like I was starting to get some control back as we approached 10,000 feet and felt I could exit the plane for the jump, but Chuck and Mike quickly decided that it wasn't worth the risk - for Chuck and for me. The jump masters take their life and their passenger's life in their hands for every tandem jump, and if someone is in distress like I was, it is always safer to abort and retry.
So, after fifteen years of waiting to do the deed and jump out of an airplane, I came very close, but failed to launch. My body let me down this time. Obviously, I was extremely disappointed, but I respect the difficult safety call that Chuck had to make. I was clearly in distress, and I have no doubt that he made the correct decision and credit him for doing so.
I was defeated and morose as we flew back to the ground. Chuck and Mike were very sympathetic, and Chuck told me several times to keep my chin up. We went back into the classroom to talk about what happened. They gave me every chance to convince them I could use the lozenges to control the gagging and was ready to go back up and try again, but I felt that I couldn't face a second disappointment if it happened again and I was concerned that even with a drink ahead of time and several lozenges it could still happen. So, I decided not to wait for a new manifest and try again that afternoon.
I am very happy that Mel succeeded and that she had such an incredible freefall and canopy experience. She said she would do it again and when I am ready she will go with me again. She should have her video later this week and I look forward to seeing it.
My third attempt wasn't the charm that I hoped it would be, but I know what to expect now and I hope that I have a chance to try again and am successful the next time. It was definitely a life experience and a learning experience, just not the one I expected.
Tuesday, September 23, 2014
Intense Acupuncture, Round 2 - No Pain, No Gain
I count myself very fortunate to have found a true Chinese acupuncture medical doctor. Last week we started a 3-day a week regimen. Instead of splitting her time working with 2-3 other patients simultaneously, she works with me for a solid hour. Oh, and she sees me on Wednesdays, which is her day off. Dr. Williams truly cares about her patients, and she is really trying to help me.
We haven't pricked fingers and toes again since my first two sessions, but she does prick under my tongue every visit with a large bore needle to get it to bleed. Today the last two were brutal. There were tears running from my eyes, and I may have grunted once, but I bore it stoically and gratefully. It hurt to eat tonight, and it hurts now. Ice cream helps some. :)
She works all of the needles hard, twirling them as well as bouncing them up and down. They hurt a fair amount, but the pain is worth it. Since the needles are often right on the nerve, twirling them or moving them up and down can cause jolts of sensation. I do bleed some. She asked me to stop taking baby aspirin for my high blood pressure to hopefully cause less bleeding.
On Friday last week, she indicated we were going to work on my swallowing. It involved a lot of needles in my scalp and neck, both front and back. It feels like one of the needles goes in very deep into my neck.
Guess what! My swallowing reflex was better over the weekend! I was able to swallow some of the larger vitamins that I hadn't been able to swallow for several weeks. I was also able to keep my full mouth guard in overnight, which I hadn't been able to do for several weeks.
We did another swallowing treatment again today, so I am anxious to see if I have additional improvement. I told her my speech was worse today, so she said we would work on it. Tonight I thought she was trying to drill them through the side of my skull. I think that was probably working on my verbal center. I'll be very interested to see what happens tomorrow morning.
Dr. Williams indicated the Chinese herbs should be ready on Friday. She indicated I probably wouldn't like the taste, but I will take my medicines with a smile.
She also suggested Tai Chi and Qi Gong exercises in addition to some hand exercises and finger rubs on the head to stimulate all of the acupressure points in the hands and scalp. I started with a Tai Chi DVD this morning and plan to continue every morning before work. The slow movements, coupled with deep breathing, should help me with flexibility, muscle strength, breathing, and stress.
I go back to acupuncture again tomorrow at lunchtime and again Friday. I have high hopes! It truly is a case of No Pain, No Gain! Can't wait to start the Chinese herbs and see what affect they may have.
Thanks for caring, and thanks for reading!
We haven't pricked fingers and toes again since my first two sessions, but she does prick under my tongue every visit with a large bore needle to get it to bleed. Today the last two were brutal. There were tears running from my eyes, and I may have grunted once, but I bore it stoically and gratefully. It hurt to eat tonight, and it hurts now. Ice cream helps some. :)
She works all of the needles hard, twirling them as well as bouncing them up and down. They hurt a fair amount, but the pain is worth it. Since the needles are often right on the nerve, twirling them or moving them up and down can cause jolts of sensation. I do bleed some. She asked me to stop taking baby aspirin for my high blood pressure to hopefully cause less bleeding.
On Friday last week, she indicated we were going to work on my swallowing. It involved a lot of needles in my scalp and neck, both front and back. It feels like one of the needles goes in very deep into my neck.
Guess what! My swallowing reflex was better over the weekend! I was able to swallow some of the larger vitamins that I hadn't been able to swallow for several weeks. I was also able to keep my full mouth guard in overnight, which I hadn't been able to do for several weeks.
We did another swallowing treatment again today, so I am anxious to see if I have additional improvement. I told her my speech was worse today, so she said we would work on it. Tonight I thought she was trying to drill them through the side of my skull. I think that was probably working on my verbal center. I'll be very interested to see what happens tomorrow morning.
Dr. Williams indicated the Chinese herbs should be ready on Friday. She indicated I probably wouldn't like the taste, but I will take my medicines with a smile.
She also suggested Tai Chi and Qi Gong exercises in addition to some hand exercises and finger rubs on the head to stimulate all of the acupressure points in the hands and scalp. I started with a Tai Chi DVD this morning and plan to continue every morning before work. The slow movements, coupled with deep breathing, should help me with flexibility, muscle strength, breathing, and stress.
I go back to acupuncture again tomorrow at lunchtime and again Friday. I have high hopes! It truly is a case of No Pain, No Gain! Can't wait to start the Chinese herbs and see what affect they may have.
Thanks for caring, and thanks for reading!
Thursday, September 18, 2014
Colotado Trip - Day 6 - Independence Pass
There were huge chunks of marble everywhere and apparently there are many sculptors that live in the town as there was statuary on every corner. All the way down the river we followed there were piles of marble, stark white blocks in contrast to the red and gray mountains. We guessed that maybe some rail cars had derailed and dumped their loads there was so much in several places.
We stopped in Redstone for a bathroom break and to stretch our legs. Chuck and Leigh had camped there before and hiked the trails before they had kids. The general store had pieces of marble for a dollar, and everyone bought one except for me.
From Basalt we drove into Aspen, and stopped to walk around, see the city, and get a Starbucks.
Just down the road was Independence Pass, which is above the treeline, so it was incredible! From there we drove by Mt. Elbert and then turned north on CO 24 and passed through Leadville.
Forest looking for the "Beaver Slide"
It was starting to get late in the afternoon, so we jumped on I-70 East. We stopped for dinner in Silverthorne at El Jalisco Mexican restaurant, which was pretty good.
When we left the restaurant it was getting dark, and we still had a ways to go. We kept our eyes peeled for deer, elk, or moose as we drove the last 2 hours on these dark back country roads, but fortunately didn't see any wildlife. We turned east onto US 40 at Kremmling and headed for Granby, then turned north on US 34 to Grand Lake, where we stopped for the night. It was a very long day in the car, but once again we saw amazing sights - not much wildlife, but grand mountains, beautiful valleys, raging rivers, and lots of interesting small towns.
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