I had my second IV this afternoon. Due to my, according to the nurse, severe reaction to the IV last week she had to talk to the doc today before deciding on a dose. He decided to leave it at the 300mg that I started with last week. Apparently my body is super sensitive to everything, which isn't news to me. The normal starting dose for glutathione is 600mg so my start dose is half of normal and I still had a larger than normal reaction to it.
Anyway, I must have dosed off during the IV because I swear she had just put it in when she took me off it again. I had been trying to meditate like I had last week but all the chairs in the treatment room were full of patients and several of the women knew each other so it was quite noisy. While the place was too noisy to meditate I didn't have any trouble catching a mininap.
Now I was tired and just starting with my neuro symptoms, balance and muscle weakness. I had to have my son come in and help me out of the chair and walk over to my wheelchair. It was a bit of a challenge with all the obstacles in the room. This is also why my wheelchair doesn't fit into the room. The room is way too small. There are five chairs and at least six poles plus the little wheelie stool for the nurse. Wicked crowded. But I'm getting sidetracked....
The metallic taste didn't start until after I left the place instead of during treatment. We stopped at a store during the trip home and I picked up an iced tea to try and get rid of the taste. I knew it wouldn't last long but ick. It just tastes nasty.
About four hours later the heartburn kicked in and then at the five hour mark diarrhea. Yeah, a little TMI but I'm in full disclosure mode here. These are all signs my body is detoxing. I just read in my GAPS book that a hot bath with 1c of baking soda or apple cider vinegar or Epsom salts will work to leach toxins out through the skin and if the bath is hot enough through sweat as well. Not sure on that one. Really hot baths showers make my CFS symptoms really bad. Like someone has the pick me up off the bathroom floor because I can't move bad. And yes my husband has really had to do this. As far as I know, it has to do with the expansion of the blood vessels and not being able to pump enough blood up to the brain or something like that. I just know that hot showers and I don't agree with each other anymore but I'm game for a warm bath with some baking soda in it.
So the plan for the evening is:
At least one dose of activated charcoal to help with detox.
Sipping Kombucha to help with the metallic taste.
Warm bath with baking soda to help with detox and my sore tushie but I have to wait for hubby to come home so I have help getting out the bath if I need it.
Thursday, September 29, 2011
I Think I'm On To Something
Terry Walh MD cured herself of MS through a modified Paleo diet. MS shares a lot of the same neuro symptoms as CFS and some have even speculated that they are related diseases. Personally, I'm beginning to believe that MS, CFS, FM, Lyme, etc probably all have different causes but because they effect the brain in the same way we end up with similar symptoms. To add the GAPS philosophy to the mix perhaps the damage is really caused in the gut either by disease or medication and that damage results in the brain not working properly. So I have a sneaking suspicion I'm heading in the right direction with my diet modifications. And, it looks like I'm going to have to invest in that juicer after all....
Wednesday, September 28, 2011
Glutathione IV: Week One, Part Three
The week in review:
I had lots of bad things happen to me this week: death of my son's friend, death of pet, death of pet on my anniversary and my period showed up.
Considering all this I had a pretty good week. I only crashed twice and then it was only for a day. I was forced into bed both times and managed to sleep once. I'm having to lay low today.
Good things that happened this week: I cooked every day. I baked. Twice. I went out almost every day. I drove (locally and not over 35mph but I drove!). I planned meals. I went grocery shopping (yes, I was in my wheelchair but hey I went shopping). I helped with dishes. I read real paper books!
So the verdict is:
I had lots of bad things happen to me this week: death of my son's friend, death of pet, death of pet on my anniversary and my period showed up.
Considering all this I had a pretty good week. I only crashed twice and then it was only for a day. I was forced into bed both times and managed to sleep once. I'm having to lay low today.
Good things that happened this week: I cooked every day. I baked. Twice. I went out almost every day. I drove (locally and not over 35mph but I drove!). I planned meals. I went grocery shopping (yes, I was in my wheelchair but hey I went shopping). I helped with dishes. I read real paper books!
So the verdict is:
- The diet is making a difference. No grains. No sugar. Pastured organic meats and dairy. Organic fruits and veg. Raw milk. Fermented food. Nuts and seeds. Full fat dairy. Free range eggs. All seem to have cleared my head up so I can think straight and read books. It has almost eliminated my heartburn completely. I have a little bit more energy. And yes I do cheat occasionally but on a daily basis I'm consuming almost no grains and sugar.
- The glutathione was worth it. It has given me an additional boost beyond what the food is doing. I'm sure I wouldn't have done so well this horrible week if I hadn't had the IV. I've felt the effect all week. I've been sitting up for longer periods, getting up to fetch things without thought and generally been more active than usual. Normally I sit or lie very still. This week I've actually been fidgeting. "Its all good." as my old boss used to say.
Tomorrow is my next IV. I get a slightly larger dose. I'm curious if I'll have die off again causing a herx reaction like last time. I'm planning on nausea, heartburn and a nasty taste in the back of my mouth. As a result, chicken soup is on the menu for dinner tomorrow along with Kombucha and my charcoal capsules.
Monday, September 26, 2011
Glutathione IV: Week One, Part Two
52 hours after my infusion I crashed. Now this isn't too surprising considering the prior three days of activity. Multiple doctor visits, first IV, loss of pet and going out to sort of celebrate our anniversary (yup worst anniversary in our 21 years of marriage). It felt just like a very bad caffeine crash. About 2pm today I just couldn't stay awake any longer. I laid down in bed and didn't wake up until after 4pm. This was after having a decent night's sleep. I had a hard time waking up. My son had to make dinner on his own. I'm doing a bit better now but still feel buggered up when I stand. My legs feel very heavy and crampy. At least my brain is working. My head seems to have remained clear even if my body is dragging badly.
I'm back on my grass fed meats and eating fewer and fewer grains and sugar so I'm sure that is helping to keep me clear headed. I've even taken up book reading. I can't seem to do it for a long time. I used to be able to read all day but I'm not struggling like I used to. I can sit and read for an hour or so before becoming tired. I'm so happy books are back on the menu of activities. As part of our night out last night we headed over to Barnes and Noble, auspiciously to keep my kid company until he headed out with his friend, but I had an ulterior motive. I wanted to go book shopping. I came home with a stack. I know it will be months before I get to go again and I haven't done any serious book shopping for a long time. It was great fun leaving there with a huge stack. Right now I am thoroughly enjoying Miss Peregrine's Home for Peculiar Children which I'm switching off with the GAPS diet book.
I've been skipping around in the GAPS book since I'm trying to learn how I can aid the detox from the IV. I'm already doing some stuff right like taking Alpha Lipoic Acid and drinking Kombucha. Yogurt made me worse so it looks like I'm going to have to make some home made sauerkraut and add the juice to my diet. It is easy to make I just have to find a head of organic cabbage and do it on a day when I can shred the entire head and then kneed it with salt. Sounds like lots of work. I'll have to do it on a high energy day and take lots of breaks. If I start the kraut tomorrow it should be ready in time for this week's IV. I only need a few tablespoons of juice and not the kraut itself so I won't need a large batch thank goodness. It is supposed to be warm this week so it should ferment in 5 days which lines up perfectly with the Friday detox. I might have to cut grains, sugar and chocolate right out during the herx period.
I think my next big purchase is going to be a juicer since that the number one recommendation for detoxing. I've been putting the purchase off since I didn't have the energy to deal with it a month ago but I'm doing a bit better now so it is time to reconsider. Hopefully I can start a Kombucha ferment as well. I have the ingredients I just need a large glass jar. God I wish I could drive and shop.
Patience. Patience. Patience. I am doing better than I was a month ago. And much better than two months ago. I'm not spending as much time prone. I'm cooking again sort of. I can make myself somewhat complicated breakfasts. I can read. Tomorrow I pick up more raw milk. I'm buying extra this time so that I can make yogurt. I finally have all the stuff and it is wicked easy. Woohoo! I can hardly wait. Things are definitely heading in the right direction despite my crash today.
I'm back on my grass fed meats and eating fewer and fewer grains and sugar so I'm sure that is helping to keep me clear headed. I've even taken up book reading. I can't seem to do it for a long time. I used to be able to read all day but I'm not struggling like I used to. I can sit and read for an hour or so before becoming tired. I'm so happy books are back on the menu of activities. As part of our night out last night we headed over to Barnes and Noble, auspiciously to keep my kid company until he headed out with his friend, but I had an ulterior motive. I wanted to go book shopping. I came home with a stack. I know it will be months before I get to go again and I haven't done any serious book shopping for a long time. It was great fun leaving there with a huge stack. Right now I am thoroughly enjoying Miss Peregrine's Home for Peculiar Children which I'm switching off with the GAPS diet book.
I've been skipping around in the GAPS book since I'm trying to learn how I can aid the detox from the IV. I'm already doing some stuff right like taking Alpha Lipoic Acid and drinking Kombucha. Yogurt made me worse so it looks like I'm going to have to make some home made sauerkraut and add the juice to my diet. It is easy to make I just have to find a head of organic cabbage and do it on a day when I can shred the entire head and then kneed it with salt. Sounds like lots of work. I'll have to do it on a high energy day and take lots of breaks. If I start the kraut tomorrow it should be ready in time for this week's IV. I only need a few tablespoons of juice and not the kraut itself so I won't need a large batch thank goodness. It is supposed to be warm this week so it should ferment in 5 days which lines up perfectly with the Friday detox. I might have to cut grains, sugar and chocolate right out during the herx period.
I think my next big purchase is going to be a juicer since that the number one recommendation for detoxing. I've been putting the purchase off since I didn't have the energy to deal with it a month ago but I'm doing a bit better now so it is time to reconsider. Hopefully I can start a Kombucha ferment as well. I have the ingredients I just need a large glass jar. God I wish I could drive and shop.
Patience. Patience. Patience. I am doing better than I was a month ago. And much better than two months ago. I'm not spending as much time prone. I'm cooking again sort of. I can make myself somewhat complicated breakfasts. I can read. Tomorrow I pick up more raw milk. I'm buying extra this time so that I can make yogurt. I finally have all the stuff and it is wicked easy. Woohoo! I can hardly wait. Things are definitely heading in the right direction despite my crash today.
Sunday, September 25, 2011
Glutathione IV: Week One, Part One
On Friday morning I received my first glutathione IV. I think it was 500mg and it took about 20 minutes. I had a book with me but I choose to meditate instead. The IV went in fine and I was comfortable. I did a meditation that drew white/blue light in through the top of my head and slowly filled up my entire body. Oddly enough when I finally managed to get the light to my toes and finger tips and I was beginning to feel light and airy I opened my eyes to find that the bag was empty and the last of the fluid was draining slowly into my arm.
The only thing I noticed was a metallicy taste at the back of my mouth and slight nausea. The nurse explained that I might have a herx reaction but should be feeling better by the next day.
I went home had lunch. Drank a large water and took some activated charcoal pills to get the toxins out of my system. I then went and managed to have a nap for several hours.
What is confounding the issue is that fact that the day before there was a family trauma. One of my cats suddenly became ill and had to be rushed to the vet. There we found out that she had some sort of mass on her liver that had started to bleed-out sometime during the day. She was now on death's door and it would cost at least $5000 to stabilize her and we still might loose her. She was a little over ten years old and had lived a good long life. While horrible we decided that we had to euthanize her. There was little chance that she would have survived very long past the surgery needed to stop the bleeding. Needless to say we were devastated. I cried. My son cried. My husband did his best to console us. We hugged and cried some more. When we finally sat down to family dinner four hours late it was a silent and gloomy dinner. None of us really felt like eating at all and there were lots of leftovers. My son and I didn't sleep well that night. I think I got about three hours and my son maybe six. So mixed in to my reaction to the IV are all of my reactions to grief.
My second cat came and woke me from my nap demanding her dinner. I felt woozy and nauseous and had a horrible taste at the back of my mouth. I couldn't decide if it was metallic or sour stomach. Anyway, I got up, fed the cat and took more activated charcoal. Hubby came in demanding dinner so I heated up leftovers from the night before. A nice simple low energy dinner. I sat and ate a large plate of food. Apparently my appetite was back. I did feel better afterwards. I was still tired and weird and had the horrible taste in my mouth. It was annoying enough that I looked it up on the internet. The only thing that seemed to help was sipping at my Kombucha (fermented tea which has a slightly sour taste). Slowly the nausea returned. I tried eating small snacks which would help for only a half hour or so. I tried milk with the same results. Eventually I gave in and ate some Pepto Bismol tablets. They helped enough that I could go to bed without throwing up. However, I didn't put in my dental appliance just in case.
This morning I woke up early at 9:30am which is unusual. I had a good nights sleep which is miraculous without my dental appliance but I was still a bit tired a groggy. I had tea while hubby made me breakfast. I tried to take a nap but was roused out of bed by a phone call from the crematorium. This started another crying jag that lasted a while. My son came home from his overnight so we sat talking and then we both got onto the internet. I finally got up and showered.
You see yesterday was our 21st anniversary and we never got to go to celebrate due to the disaster. So I showered and I had my lie down which I have to do after I shower. Then next thing I know I've been asleep for almost two hours. Now I am finally starting to feel almost normal. I'm still wonky. I'm still a bit groggy but excited to be going out. I get dressed and off we go to dinner and then spent an hour going around Barnes and Noble. I got a huge stack of books. A nice mellow night out.
It is now midnight. I'm very very tired which is weird for me since I normally go to bed at 3am and I had a that long afternoon nap. It is even weirder since I had both dessert and coffee at dinner which usually keeps me up until 5or 6am. My nausea is back and I've already taken some charcoal. Milk is next or maybe I'll head straight for the Pepto. But I do see an early bedtime in my near future.
I wish I could tell what reactions are from grief and what is from the glutathione but they are inextricably intertwined. I'll have to wait until next week to sort it out when I have gotten over the shock of loosing my beloved cat.
The only thing I noticed was a metallicy taste at the back of my mouth and slight nausea. The nurse explained that I might have a herx reaction but should be feeling better by the next day.
I went home had lunch. Drank a large water and took some activated charcoal pills to get the toxins out of my system. I then went and managed to have a nap for several hours.
What is confounding the issue is that fact that the day before there was a family trauma. One of my cats suddenly became ill and had to be rushed to the vet. There we found out that she had some sort of mass on her liver that had started to bleed-out sometime during the day. She was now on death's door and it would cost at least $5000 to stabilize her and we still might loose her. She was a little over ten years old and had lived a good long life. While horrible we decided that we had to euthanize her. There was little chance that she would have survived very long past the surgery needed to stop the bleeding. Needless to say we were devastated. I cried. My son cried. My husband did his best to console us. We hugged and cried some more. When we finally sat down to family dinner four hours late it was a silent and gloomy dinner. None of us really felt like eating at all and there were lots of leftovers. My son and I didn't sleep well that night. I think I got about three hours and my son maybe six. So mixed in to my reaction to the IV are all of my reactions to grief.
My second cat came and woke me from my nap demanding her dinner. I felt woozy and nauseous and had a horrible taste at the back of my mouth. I couldn't decide if it was metallic or sour stomach. Anyway, I got up, fed the cat and took more activated charcoal. Hubby came in demanding dinner so I heated up leftovers from the night before. A nice simple low energy dinner. I sat and ate a large plate of food. Apparently my appetite was back. I did feel better afterwards. I was still tired and weird and had the horrible taste in my mouth. It was annoying enough that I looked it up on the internet. The only thing that seemed to help was sipping at my Kombucha (fermented tea which has a slightly sour taste). Slowly the nausea returned. I tried eating small snacks which would help for only a half hour or so. I tried milk with the same results. Eventually I gave in and ate some Pepto Bismol tablets. They helped enough that I could go to bed without throwing up. However, I didn't put in my dental appliance just in case.
This morning I woke up early at 9:30am which is unusual. I had a good nights sleep which is miraculous without my dental appliance but I was still a bit tired a groggy. I had tea while hubby made me breakfast. I tried to take a nap but was roused out of bed by a phone call from the crematorium. This started another crying jag that lasted a while. My son came home from his overnight so we sat talking and then we both got onto the internet. I finally got up and showered.
You see yesterday was our 21st anniversary and we never got to go to celebrate due to the disaster. So I showered and I had my lie down which I have to do after I shower. Then next thing I know I've been asleep for almost two hours. Now I am finally starting to feel almost normal. I'm still wonky. I'm still a bit groggy but excited to be going out. I get dressed and off we go to dinner and then spent an hour going around Barnes and Noble. I got a huge stack of books. A nice mellow night out.
It is now midnight. I'm very very tired which is weird for me since I normally go to bed at 3am and I had a that long afternoon nap. It is even weirder since I had both dessert and coffee at dinner which usually keeps me up until 5or 6am. My nausea is back and I've already taken some charcoal. Milk is next or maybe I'll head straight for the Pepto. But I do see an early bedtime in my near future.
I wish I could tell what reactions are from grief and what is from the glutathione but they are inextricably intertwined. I'll have to wait until next week to sort it out when I have gotten over the shock of loosing my beloved cat.
Thursday, September 22, 2011
Solitary Confinement
I get weird about being stuck in the house. This is a kickback to when I was a kid. I grew up in a violent alcoholic household. There was lots of verbal abuse and occasionally physical abuse. This occurred back before restraining orders existed or it was the law to report abuse of a minor. I felt trapped since I had to live there and couldn't drive and didn't earn enough money to move out on my own. I escaped by going off to college, making sure that I got a degree and then a good job so that I never had to depend upon anyone ever again. Up till last year that was true. I was independent. I had chosen to marry and chosen to stay with my husband for 20 years. However, I was still capable of living on my own if I wanted to.
Since I have become sick and gave up driving I'm dependent upon others. I need rides. I need someone to push me in the wheelchair. Sometimes I almost have to beg to get to go someplace I want which is infuriating. I can't go visit people I want to see. I can't go to the stores I want to go to. I can't go grocery shopping where I want to. I can't get to the farms to purchase raw dairy. I am absolutely dependent upon the whims of my son and husband as to when I get to go out and where I get to go to.
This drives me absolutely loopy. Sometimes, like last week, it starts to feel more like I'm in jail. With hubby working most of the week it often felt like I was in solitary.
Now I've said before that I'm a hardcore introvert so normally I have no trouble being by myself. I do start to have trouble with it when it isn't my own choice. That slight variation in intention sends me off the deep end. I fall into despair and get really wonky. I avoid people and contact even more and get all mopey, grumpy and ill tempered. I start to think the worst of my family. I start to feel trapped. Caged. Of course with CFS this makes my physical symptoms worse so this is the start of a downward spiral. I watch myself circling the proverbial drain getting worse and worse each day.
I haven't figured out how to stop this yet. I've only just figured out that this is happening, what the triggers are and why it is such an intense experience for me (reminds me of being trapped at home when I was a kid). It is an intense visceral reaction. But just the recognition and acknowledgement of it is good. It is the start of understanding and the start of unraveling the puzzle. Once the puzzle is solved then healing and reconciliation can begin. Maybe next time my husband is off in the wide world being busy I won't get quite so wound up.
Since I have become sick and gave up driving I'm dependent upon others. I need rides. I need someone to push me in the wheelchair. Sometimes I almost have to beg to get to go someplace I want which is infuriating. I can't go visit people I want to see. I can't go to the stores I want to go to. I can't go grocery shopping where I want to. I can't get to the farms to purchase raw dairy. I am absolutely dependent upon the whims of my son and husband as to when I get to go out and where I get to go to.
This drives me absolutely loopy. Sometimes, like last week, it starts to feel more like I'm in jail. With hubby working most of the week it often felt like I was in solitary.
Now I've said before that I'm a hardcore introvert so normally I have no trouble being by myself. I do start to have trouble with it when it isn't my own choice. That slight variation in intention sends me off the deep end. I fall into despair and get really wonky. I avoid people and contact even more and get all mopey, grumpy and ill tempered. I start to think the worst of my family. I start to feel trapped. Caged. Of course with CFS this makes my physical symptoms worse so this is the start of a downward spiral. I watch myself circling the proverbial drain getting worse and worse each day.
I haven't figured out how to stop this yet. I've only just figured out that this is happening, what the triggers are and why it is such an intense experience for me (reminds me of being trapped at home when I was a kid). It is an intense visceral reaction. But just the recognition and acknowledgement of it is good. It is the start of understanding and the start of unraveling the puzzle. Once the puzzle is solved then healing and reconciliation can begin. Maybe next time my husband is off in the wide world being busy I won't get quite so wound up.
Monday, September 19, 2011
Swing and a Miss
I had a bad week this week. So of course I avoided my blog once again. I get into avoidance/denial mode and this blog has become intertwined with my illness. So when I'm trying to deny my reality of CFS I avoid my blog. Hence no posts even when I have lots to say....
I've been very grumpy this week. For lots of reasons. I did too much last weekend and crashed. I had a tilt table test where I almost passed out which made me crash. My husband was gone all week due to work. Until tonight no one has visited for a long while. I can't seem to convince anyone to drive me to places I would really like to go. When my kid was finally available it turned out that hubby had driven to work with my wheelchair in his trunk. I'm just getting frustrated at not being able to do stuff or go places. I'm annoyed that I have to beg family members to drive me places and if I hint at trips to friends they are too busy to go. I'm tired of being stuck in the house. I only get to go out for groceries and doctor appointments. No fun things. It also ticked me off that I spent the better part of two days lying in bed. I was listening to my audio book which was fun but I didn't get the miraculous recovery I was hoping for. I still felt like crap today and now I'm also sick of lying down. Because I'm grumpy I cheated on my diet and made my body feel extra crappy. So blah...
I'm grumpy and in a pissy mood. Hopefully I'll have the tilt table test results in a few days and I can write about that. In the meantime I've ordered the GAPS diet book, purchased some grass fed cow's milk (yum!) and am settling in to watch Star Trek Enterprise series.
As an aside I do recommend Discovery of Witches but get the print edition if you can read books. The audio version keeps knocking me out cold. Something about her voice....
I've been very grumpy this week. For lots of reasons. I did too much last weekend and crashed. I had a tilt table test where I almost passed out which made me crash. My husband was gone all week due to work. Until tonight no one has visited for a long while. I can't seem to convince anyone to drive me to places I would really like to go. When my kid was finally available it turned out that hubby had driven to work with my wheelchair in his trunk. I'm just getting frustrated at not being able to do stuff or go places. I'm annoyed that I have to beg family members to drive me places and if I hint at trips to friends they are too busy to go. I'm tired of being stuck in the house. I only get to go out for groceries and doctor appointments. No fun things. It also ticked me off that I spent the better part of two days lying in bed. I was listening to my audio book which was fun but I didn't get the miraculous recovery I was hoping for. I still felt like crap today and now I'm also sick of lying down. Because I'm grumpy I cheated on my diet and made my body feel extra crappy. So blah...
I'm grumpy and in a pissy mood. Hopefully I'll have the tilt table test results in a few days and I can write about that. In the meantime I've ordered the GAPS diet book, purchased some grass fed cow's milk (yum!) and am settling in to watch Star Trek Enterprise series.
As an aside I do recommend Discovery of Witches but get the print edition if you can read books. The audio version keeps knocking me out cold. Something about her voice....
Wednesday, September 14, 2011
I Love My Dental Hygienist
It was time for my biannual teeth cleaning yesterday. Having spent the first seven years of my life in England living through the horrors of British dentistry (true sadists if you ask me) I HATE going to the dentist. I am very lucky that after I settled down with my husband I found a very good dentist. I still hate going there but the staff is great. Yes, I do grip the arm wrests until my knuckles turn white but it is less painful than my acupuncture treatments so I really shouldn't complain.
Since contracting CFS though I've had some extra issues to deal with when it comes to my teeth, mouth and jaw. The CFS has aggravated a nerve that serves the right lower side of my face, resulting in it being overly sensitive to touch. When the dentist pokes around during his exam it actually hurts but only on the right lower gums. Needless to say this has caused some problems with my teeth being cleaned. The hygienist's favorite toy is an ultrasonic descaler. This little thing causes me great pain. She tries to be gentle and actually skipped using it on the lower right side when I had my teeth cleaned six months ago. Of course the manual descaling and even the polishing makes me wince. It is a thoroughly uncomfortable experience so I wasn't at all looking forward to yesterday's appointment.
Of course this was the first time I showed up in the office with my walker which caused a commotion amongst the staff. They all had to come and see it and ooh and aah over it. Can you tell I've been going there for years??
Anyway, I finally get in the chair and we start discussing my teeth, the fact that I have a new dental appliance which is making my teeth extra sore and of course the nerve in my face is acting up more than normal. Suddenly she had a brainstorm. Apparently she has some numbing gel she can rub on my gums. I was worried about toxic load, chemical exposure (it was a violent blue color), etc but decided to give it a go anyway. She rubbed this stuff on my gums which not only made them numb but also my tongue, mouth, lips and throat. She then started cleaning and BLISS. No pain. Nothing. It was the most pleasant cleaning I've ever had. I could kiss her. It went so well that she put a note in my file to use the same stuff next time. Of course I had her write the name of the stuff down on a piece of paper in case I had a reaction to it but more than 24 hours later I'm still good. So winner winner chicken dinner. I have a new tool. Sometimes I love modern medicine!
Tuesday, September 13, 2011
Medicine as Art
I happened upon this web site today: Pharmacopeia. Their words describe this site better than mine,
I wanted to share their artwork with you. It struck a cord in me as I'm sure it will resonate with you also.
"For over a decade, the body of artwork called Pharmacopeia has engaged viewers in the debate around our relationship with medical treatments, encouraging us to examine our own medical and pharmacological history. It continues to explore the tension between the dependence of our society on pharmaceuticals and the ambivalence we feel towards them."
I wanted to share their artwork with you. It struck a cord in me as I'm sure it will resonate with you also.
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| Pain Meds |
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| Migraine Tiara |
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| OTC Veil |
Looking at the fistfulls of pills I take daily I too could easily make a CFS veil or pain med shoes. For better descriptions of the art work and the various artists please go to their web site, Pharmacopeia. There is also much more art, wearable and not, on their site. Very inspiring and disturbing at the same time. In its own way it is a sort of activism. A way of making our invisible illness visible.
Monday, September 12, 2011
The Diet Chronicles or Let's Kick Some CFS Ass!
And now for another chapter in the Diet Chronicles also known as The Great How Diet Effects CFS Experiment.....
In a galaxy far far away there lived a middle aged woman with CFS. After exhausting the western medicine options in her local vicinity (which wasn't much) she heeded the odd advice of her yoga teacher from years ago: "If what you were doing got you into this mess, what makes you think that continuing it will get you out of it?" She was referring to exercise, the Standard American Diet (SAD) and western medicine. Couple this way of thinking with the results of the Diet From Hell experience and it got me thinking: if food can make me sicker it should be able to make me better. Maybe not cured but at least better than I have been doing. Plus I met someone on the net that had a complete remission from CFS within two years after following the GAPS diet. This was the third person that I had heard of that had at least improvement if not complete cure from CFS after drastic changes in diet. So I've been on a diet quest. I've been reading about the Weston A Price (WAP) diet, Paleo diet and the GAPS diet in particular.
To start my baby steps down the path of healing through nutrition I started ordering meat from the Midwest which shows up at my door after it was flash frozen by the butcher. The cows are pastured and fed only grass. The chickens are truly free range so that they can eat bugs as well as grains and generally go about being chickens. The pigs are also certified humanely raised. This is all in accordance with the WAP diet.
I also weaned off grain products and sugar. Although I don't eat wheat, I do eat a considerable amount of GF products such as breads, English muffins, waffles, rolls and pasta. NONE of the GF products I eat are organic (those are almost impossible to find) and I have no idea how many of them are GMO. Since most of the GF stuff I eat is corn based (I HATE the rice based stuff), I'm guessing I'm eating a lot of GMO crap. So I've gone off grain products in general. This was easier than I thought. I kind of started doing this without thinking about it. I noticed that I felt crappy after eating a bowl of cereal or a granola bar so I stopped eating them and over the course of a few months I've eliminated most grain products from my diet. Oddly enough, this is one of the principles of the Paleo diet.
To sum up: I've been eating organic/grass fed/free range meats and eggs; I've reintroduced beef into my diet; I've reintroduced grass fed butter; I've drastically reduced grains; I've almost entirely eliminated white sugar; I've been consuming full fat organic dairy; I've been eating raw milk cheese; I've been using Ghee, butter and olive oil for cooking; I've switched over to Celtic Sea salt for everything; and I've buying most of our fruits and vegetables at the farmer's market from an organic vendor. I've been doing this for about a month. It loosely follows WAP and Paleo.
Results: I am doing better! Not great but better. My head is clearer. My recovery from exertion is faster. I have a little bit more energy so I've been able to do a little bit more. My gastro symptoms have improved dramatically. No more heartburn. I've been off my gastro meds for a little over a month now and I haven't even taken much activated charcoal. I only had to eat Tums after I stupidly ate some Oscar Myer precooked bacon (can you say chemical sticks?).
I love that my digestion is doing so well. A month ago it was hard for me to even drink enough water on a daily basis. My heartburn was so bad if I drank water it felt like someone had taken a blow torch to my chest. Makes it very hard to eat and drink properly when everything causes great pain even when taking meds. At one point I was bringing up so much stomach acid that I lost my voice and ended up in the ENT's office with a swollen throat. NOT fun.
Hubby has noticed a difference as well. He is funny. He hasn't said anything until recently but he has silently followed my lead and reduced his grain and junk food intake. He is still eating sandwiches but is using better bread which comes in smaller slices. He is also not eating as many treats and has switched to tortilla chips from potato chips. He says he is feeling much better. Today he told me that his tummy feels weird. I asked him how and he told me that it is squishy. Turns out he has been bloated for years from eating grains which made his tummy hard. Now that the bloating is going away he has a squishy tummy. I told him that is a good thing. The same thing happen to my Mom when she went GF and stopped consuming anything with high fructose corn syrup in it. Don't you just love our modern foods??
So I'm happy to report that things are improving. I even managed to drive a couple of times over the past two weeks. Granted I'm driving like a little old lady (I feel like Miss Daisy not going over 25mph), taking only local roads and only going short distances but hey I'm on the road again and it feels great! I've managed to help with the dishes twice. Again I pull a chair up to the dishwasher but it is an improvement over having to lie down after dinner. I've been cooking a lot and even made mayonnaise from scratch. Not difficult but hey I did it! A month ago I was barely functional. Just making a pot of tea and a boiled egg would send me back to bed for a rest. Now I can make an omelet and then wipe the counters down afterwards. Woohoo!!
This might be just one of those CFS things. You know, an unpredictable upswing, but I have a feeling diet is a strong portion of my improvement. If I cheat I feel worse. I get more brain fog, experience more malaise and of course my gastro symptoms return. If I stick to my diet and do some preemptive resting, I can now cook dinner at dinner time which is my worst time of day! Whatever it is, I'll take it.
Of course I'm going to continue tinkering with my diet. Adding bone broth and raw milk yogurt are the next steps. I bought grass fed beef bones and yogurt culture this past week and am very excited to try them out. I even have some fresh raspberries and honey to add to the yogurt. I can hardly wait! Let's kick some CFS ass!
In a galaxy far far away there lived a middle aged woman with CFS. After exhausting the western medicine options in her local vicinity (which wasn't much) she heeded the odd advice of her yoga teacher from years ago: "If what you were doing got you into this mess, what makes you think that continuing it will get you out of it?" She was referring to exercise, the Standard American Diet (SAD) and western medicine. Couple this way of thinking with the results of the Diet From Hell experience and it got me thinking: if food can make me sicker it should be able to make me better. Maybe not cured but at least better than I have been doing. Plus I met someone on the net that had a complete remission from CFS within two years after following the GAPS diet. This was the third person that I had heard of that had at least improvement if not complete cure from CFS after drastic changes in diet. So I've been on a diet quest. I've been reading about the Weston A Price (WAP) diet, Paleo diet and the GAPS diet in particular.
To start my baby steps down the path of healing through nutrition I started ordering meat from the Midwest which shows up at my door after it was flash frozen by the butcher. The cows are pastured and fed only grass. The chickens are truly free range so that they can eat bugs as well as grains and generally go about being chickens. The pigs are also certified humanely raised. This is all in accordance with the WAP diet.
I also weaned off grain products and sugar. Although I don't eat wheat, I do eat a considerable amount of GF products such as breads, English muffins, waffles, rolls and pasta. NONE of the GF products I eat are organic (those are almost impossible to find) and I have no idea how many of them are GMO. Since most of the GF stuff I eat is corn based (I HATE the rice based stuff), I'm guessing I'm eating a lot of GMO crap. So I've gone off grain products in general. This was easier than I thought. I kind of started doing this without thinking about it. I noticed that I felt crappy after eating a bowl of cereal or a granola bar so I stopped eating them and over the course of a few months I've eliminated most grain products from my diet. Oddly enough, this is one of the principles of the Paleo diet.
To sum up: I've been eating organic/grass fed/free range meats and eggs; I've reintroduced beef into my diet; I've reintroduced grass fed butter; I've drastically reduced grains; I've almost entirely eliminated white sugar; I've been consuming full fat organic dairy; I've been eating raw milk cheese; I've been using Ghee, butter and olive oil for cooking; I've switched over to Celtic Sea salt for everything; and I've buying most of our fruits and vegetables at the farmer's market from an organic vendor. I've been doing this for about a month. It loosely follows WAP and Paleo.
Results: I am doing better! Not great but better. My head is clearer. My recovery from exertion is faster. I have a little bit more energy so I've been able to do a little bit more. My gastro symptoms have improved dramatically. No more heartburn. I've been off my gastro meds for a little over a month now and I haven't even taken much activated charcoal. I only had to eat Tums after I stupidly ate some Oscar Myer precooked bacon (can you say chemical sticks?).
I love that my digestion is doing so well. A month ago it was hard for me to even drink enough water on a daily basis. My heartburn was so bad if I drank water it felt like someone had taken a blow torch to my chest. Makes it very hard to eat and drink properly when everything causes great pain even when taking meds. At one point I was bringing up so much stomach acid that I lost my voice and ended up in the ENT's office with a swollen throat. NOT fun.
Hubby has noticed a difference as well. He is funny. He hasn't said anything until recently but he has silently followed my lead and reduced his grain and junk food intake. He is still eating sandwiches but is using better bread which comes in smaller slices. He is also not eating as many treats and has switched to tortilla chips from potato chips. He says he is feeling much better. Today he told me that his tummy feels weird. I asked him how and he told me that it is squishy. Turns out he has been bloated for years from eating grains which made his tummy hard. Now that the bloating is going away he has a squishy tummy. I told him that is a good thing. The same thing happen to my Mom when she went GF and stopped consuming anything with high fructose corn syrup in it. Don't you just love our modern foods??
So I'm happy to report that things are improving. I even managed to drive a couple of times over the past two weeks. Granted I'm driving like a little old lady (I feel like Miss Daisy not going over 25mph), taking only local roads and only going short distances but hey I'm on the road again and it feels great! I've managed to help with the dishes twice. Again I pull a chair up to the dishwasher but it is an improvement over having to lie down after dinner. I've been cooking a lot and even made mayonnaise from scratch. Not difficult but hey I did it! A month ago I was barely functional. Just making a pot of tea and a boiled egg would send me back to bed for a rest. Now I can make an omelet and then wipe the counters down afterwards. Woohoo!!
This might be just one of those CFS things. You know, an unpredictable upswing, but I have a feeling diet is a strong portion of my improvement. If I cheat I feel worse. I get more brain fog, experience more malaise and of course my gastro symptoms return. If I stick to my diet and do some preemptive resting, I can now cook dinner at dinner time which is my worst time of day! Whatever it is, I'll take it.
Of course I'm going to continue tinkering with my diet. Adding bone broth and raw milk yogurt are the next steps. I bought grass fed beef bones and yogurt culture this past week and am very excited to try them out. I even have some fresh raspberries and honey to add to the yogurt. I can hardly wait! Let's kick some CFS ass!
Wednesday, September 7, 2011
Night of the Khamikazi Bugs
Every year, on one single night, my kitchen is invaded by small flying bugs. They are bigger than gnats and mosquitoes but smaller than ants. They arrive en-mass despite the screens on the windows and doors. The mesh of the screens is much smaller than they are but they arrive anyway almost as if they just appear in my kitchen by enchantment.
They are attracted to the light over my kitchen table. They arrive, hover around the light and die. My table is covered with hundreds of small dead bugs. The day after the night of the Khamikazi Bugs I have to clean everything that was on the table. Picking up all the tiny dead bodies. There is never a forewarning and there are never any sightings of a few stray bugs the night after. They all show up on the same day and die within hours of arrival. It happens at the end of the summer. Every single year.
I have no idea what they are, where they come from or how they even reproduce considering their apparently short lives. This is one of those life mysteries that will never be solved by someone like me.
They are attracted to the light over my kitchen table. They arrive, hover around the light and die. My table is covered with hundreds of small dead bugs. The day after the night of the Khamikazi Bugs I have to clean everything that was on the table. Picking up all the tiny dead bodies. There is never a forewarning and there are never any sightings of a few stray bugs the night after. They all show up on the same day and die within hours of arrival. It happens at the end of the summer. Every single year.
I have no idea what they are, where they come from or how they even reproduce considering their apparently short lives. This is one of those life mysteries that will never be solved by someone like me.
Monday, September 5, 2011
Birds and Bees Report
Once the hurricane passed I managed to spend some time outside on my deck in the lovely weather we had the following week. No damage to my house or property. A few trees down in the neighborhood. There was one house in town that was a total loss and a few cars met their early demise. But apart from a few momentary power outages our town fared quite well.
The birds and bees have been out in force this week. It seems like they are all enjoying the nice weather after being in hiding during the hurricane. I have a sedum plant called Autumn Joy that is coming into bloom. It has smallish purple flowers and surprisingly the wasps love this plant.
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| Autumn Joy Sedum |
So far I've managed to identify paper wasps, great golden digger wasps and giant black wasps. This plant of course attracts honeybees but they are chased off by some of the smaller territorial wasps. It is quite amusing to watch since the bees are quite smart. Once the wasp finds the offending bee it flies after it, chasing it about five feet or so from the plant. The bee will fly in a straight path away from the plant. The wasp will give up pursuit and return to the plant. The bee will then make a huge circle around my deck and land back on the plant on the opposite side on a shorter flower stem and go back to collecting until the chase starts all over again with a different wasp. Some pics from http://www.cirrusimage.com/hymenoptera_Sphex_pennsylvanica.htm
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| Giant Black Wasp also known as a Katy Did Killer |
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| Great Golden Digger Wasp |
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| Paper Wasp |
To give you some perspective the paper wasps are about the size of a standard yellow jacket. The giant black wasp and great golden digger are both about the size of my thumb. They are HUGE and I often have at least a half dozen walking around the sedum heads at the same time. The funny thing is it is the smaller wasps that chase the large honeybees off. The honeybees must be ten times larger than the wasps. No wonder the bees just go back to the plant. For some odd reason blue bottle fly also like this plant and there are usually several of them walking around the flower heads.
The birds have been fun this week. I hear the Copper's Hawks almost daily but I haven't seen either them or the crows. They must be hunting further afield than the pond behind my house.
The birds have been fun this week. I hear the Copper's Hawks almost daily but I haven't seen either them or the crows. They must be hunting further afield than the pond behind my house.
My great news is that I finally found out what has been making the loud screeching call all summer. I managed to spot him in my large oak tree. I heard him before I spotted him of course and ran in the house for the binoculars before he flew off. It was a Red Bellied Woodpecker. This is my first sighting of one of these birds which is surprising considering how common they are supposed to be.
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| Red Bellied Woodpecker |
This guy looks like he is sporting an orange red Mohawk. He is smallish but damn loud.
The sparrows have been cracking me up lately. They usually roost in a huge Forsythia bush I have in my backyard. Of course this is next to my 6' high, wood privacy fence. The birds have taken to roosting on the one inch thick cross bracing of the fence. They get all huddled up next to the fence slats. They look very odd and in the ten+ years I've lived here I've never seen this behavior before. I finally had enough energy to go look and see if there was anything special about the roosting spot on the fence and was disappointed to find nothing there. I was hoping for a seed stash or water pocket but nothing. Just wooden fence.
One more piece of bird news, I had a Downy Woodpecker land on the top of my open bedroom window. I have casement windows so they swing out when open. I thought the bird sounded close I had no idea he was perched on top of my window.
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| Downy Woodpecker Female |
I didn't get a good look at this one so I'm not sure if it was female (white head) or male (red patch on head). I didn't see any red so I'm guessing female but it moved awfully quick so I might have missed it.
I've also had several 2am visits from the local Screech Owl. In the ten years I've heard these guys I've yet to see one. This week it was very close. If it wasn't in my yard proper it was in one of the neighbor's trees. My ornithologist friend told me that if you could mimic the call they will fly to you. I haven't managed this yet. When I stood out on the deck last week calling at 1am, my son came out and told me I sounded like an idiot. I love my teenage son.
I've also had several 2am visits from the local Screech Owl. In the ten years I've heard these guys I've yet to see one. This week it was very close. If it wasn't in my yard proper it was in one of the neighbor's trees. My ornithologist friend told me that if you could mimic the call they will fly to you. I haven't managed this yet. When I stood out on the deck last week calling at 1am, my son came out and told me I sounded like an idiot. I love my teenage son.
Saturday, September 3, 2011
A New Adventure in Food
Just wrote a long article on my food blog regarding diet and CFS.
http://baffled-fastfoodie.blogspot.com/2011/09/new-food-adventure.html
What I didn't mention over there is that I'm slowly getting more and more angry at my inability to easily obtain organic wholesome food. BigAg has twigged that they can make tons of money from the organic market and they have slowly been buying out the small purist organic farmers. As I recover from CFS, I'm not only going to have to be a CFS activist I'm going to have to be a food activist as well. We all need good healthy food to have the best chance of being healthy ourselves.
I think what scared the crap out of me was that we got top soil from a local farm last year just before I got sick. We put in on our grass and it was immediately killed. NOTHING has grown in this soil. Not even weeds and it has been just short of two years. This spring hubby had to physically remove it and put down fresh top soil to get grass growing again. There are still dead spots in the lawn. Bits he missed during the soil removal. This too will have to hauled away. This is scary shit! What the heck is Monsanto doing to our soil? This is going to kill us all. The honey bees are already in trouble. What is next?
http://baffled-fastfoodie.blogspot.com/2011/09/new-food-adventure.html
What I didn't mention over there is that I'm slowly getting more and more angry at my inability to easily obtain organic wholesome food. BigAg has twigged that they can make tons of money from the organic market and they have slowly been buying out the small purist organic farmers. As I recover from CFS, I'm not only going to have to be a CFS activist I'm going to have to be a food activist as well. We all need good healthy food to have the best chance of being healthy ourselves.
I think what scared the crap out of me was that we got top soil from a local farm last year just before I got sick. We put in on our grass and it was immediately killed. NOTHING has grown in this soil. Not even weeds and it has been just short of two years. This spring hubby had to physically remove it and put down fresh top soil to get grass growing again. There are still dead spots in the lawn. Bits he missed during the soil removal. This too will have to hauled away. This is scary shit! What the heck is Monsanto doing to our soil? This is going to kill us all. The honey bees are already in trouble. What is next?
Thursday, September 1, 2011
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