My recovery from last year is going really slow. However, I'm coughing way less. We have a buyer for our old house but we haven't closed on it yet. Hubs keeps going over there every weekend so my cough hasn't gone away completely yet. The concept of his showering and changing clothes after being over there has never occurred to him. I'm lucky if he changes his shirt and that only happens if I bug him. Then he sleeps in our bed and contaminates the sheets and blankets. So I'm still coughing. Occasionally I have to use my asthma inhaler. But things are way better than before. A pack of cough drops can last me almost an entire week instead of one day. I'm using my inhaler about once a week instead of daily. I do have setbacks if I'm not careful when unpacking boxes. My son gets it so he showers, changes clothes or handles crap from the old house that hasn't been decon'ed yet. He can see the direct relation between his exposure and my coughing fits. Hubs just gets annoyed that I'm coughing rather than helping out. Sigh.....
I'm still pretty crashed. I'm sofa bound. I'm cooking very simple meals still. Luckily it's summer so we can grill a lot so all I have to make are sides or salads. On my good days I'm scrambling eggs and making coffee for breakfast in addition to the simple dinners. I'm getting out a bit when my son is around (he's currently flying back and forth between here and CO for his work). We go for coffee and late breakfast almost daily when he is here. I get to the supermarket once a week and have just started to go to the farmers market roughly twice a month. I'm not using enough fresh veg to go more than that. It is a waste of spoons. I'm still eating way too much take out but that has been improving. I actually feel better on days where we eat in. Even though I'm not making everything from scratch I'm buying mostly organic nonGMO foods and it makes a marked difference in how I feel. I'm considering hiring a prep cook to batch cook for me. My son has a friend that is interested. Haven't gotten around to arranging it of course but I'm hoping it will happen sooner than later.
After one bust, I managed to find a chiro I really like. (That is a story for another day.) I'm doing phone conferencing with my sleep doc and I FINALLY got it to work so I no longer have to travel to Jamaica Plain to his office. I've an apt with a potentially new internist. She works with Emerson Hospital and has a background in rheumatology so might be familiar with fibro. Here's hoping. My old doc, while not perfect, actually had some exposure to CFS/ME through a relative that ran a clinic for patients. I need some follow-up bloodwork from her: cholesterol, thyroid, vitD, and iron. Tell her/teach her about my illness and get the "lose weight" lecture. I still haven't managed to fill out all the paperwork yet.
Presently I'm push/crash cycling so I have to work on that.
I've been trying to improve my sleep space. I was sleeping in the guest bedroom but my son has been visiting more and more since he no longer has a NYC apt. So far I've purchased blackout drapes for the master bedroom which work great! I bought a wedge pillow which is comfy but still smells weird so I've got it degassing. I think the waterbed still needs some water removed as it is too hard. I still have to find a solution for overheating with the mattress and pillows. Probably need another cotton or wool filled pillow and a cotton or wool filled mattress cover. Right now I wake up and I'm soaked in sweat. I found that if I sleep across the bed I do better than if I sleep normally in it. I also bought an AC unit for the masterbed but it isn't hooked up yet. Turns out the central AC unit is too small for the house and only cools the first floor adequately. The solution is to put a second unit in the attic to cool the second floor. The portable AC is a nice stop gap measure until we refurb the central AC in a year or two. Plus, typically I'm the only one that wants to sleep in a refrigerator. Sleeping during daylight hours means the bedroom I'm in heats up to oven temps which wakes me up and makes me miserable. Both guys sleep at night so the bedrooms aren't too bad for them.
Once I'm done with the masterbed, I'm going to fix the guest bedroom because damn that gel bed is AWESOME!!! Plus I bought the adjustable frame to go under it so I can raise the head and foot of the bed to get it just right for my aches and pains. All the room needs is some new blackout blinds. It is nice to have a second space to sleep in. I'm very comfortable there and sleep the best in that room. Hopefully I can upgrade the masterbed so I'm equally comfortable sleeping in that room also. It is a pain to drag my CPAP gear back and forth between the two bedrooms. Until my kid gets another apt somewhere he'll be here most weekends and some weeks so I get kicked out the room every four days or so.
Other irons in the fire: I'm trying Dr Teitelbaum's protocol for increasing blood volume. I'm still experiencing dizzy spells even with my period problem solved. My biggest hinderance lately is dizziness on standing and getting out of breath really easily. I figure fixing my blood volume will help. So I ordered Vitalyte (formerly known as Gookinaid) and D-ribose powder. I already have CoQ10 and zinc. I like the electrolyte powder. I bought lemon. I add the D-ribose to it and have been drinking two glasses a day. I'm already seeing improved brain function. That is typically the precursor to improved physical function. I haven't started the CoQ10 yet. The protocol also calls for acetyl L carnitine but it is contraindicated in folks with thyroid issues so I'm skipping that part. I might introduce it at a very low dose after I get my thyroid tested by my new doc. That way I'll have a baseline and see how the supplement affects my thyroid.
I'm also trying to sunbathe more. I haven't been going outside due to the heat. I used to sunbathe late in the day after 4pm at my old house but my deck goes into shade pretty early due to all the trees so I can't sunbathe late in the day at my new place. I'm now trying to go out no matter what for 5-15mins around 3:30pm. It isn't long but it is better than nothing and I can tolerate the heat for that time frame particularly since I'm stepping back into the nice AC. I always take ice water outside with me. And I get almost naked so the sun exposure is all over and I get a good dose of sun in a short period of time.
That is about it. This post has gotten way longer than I intended. But I have plans. Lots of plans. I was getting a bit depressed but decided to take the bull by the horns and try to improve things for myself starting with better sleeping conditions. Then food, then sun, then supplements. Maybe new meds after I see my new doc. Hope has returned! Woot!
Things I want to do but haven't even thought about yet; get a new dentist, get a new therapist, hire a house cleaner, detox from mold.
Showing posts with label crash. Show all posts
Showing posts with label crash. Show all posts
Monday, July 24, 2017
Monday, January 11, 2016
To the ER and Back Again
Part of the reason I've been missing from here is the last health scare escapade. For about a year now I've been having some nasty nasty chest pain (and yes I should have gone to the hospital the first time it happened and yes the EMTs and nurses all chewed me out for not doing so). Anywho, when I'm fast asleep I'll get woken up by a horrible stabbing pain in my back on the left side just above the bottom of my rib cage. After the initial shooting pain it tends to settle into a tight band around my chest at the level my bra strap usually circumnavigates my chest. Not a way that I like getting woken up. I can't lie down. I have to sit up until it passes which usually happens after a few minutes of excruciating pain. Each time it has happened I've wondered if I'm having a heart attack but then it goes away and I almost immediately go back to feeling normal (well my normal) so I've put off doing anything about it. One October morning about 10am I got woken out of a dead sleep by this stabbing pain. It was the worst it has ever been. This time the pain migrated up the right side of my neck/throat into the right side of my face before settling into the more normal tight band around my chest. I was scared enough to fess up that I should prob go to the hospital. Well this set of an astonishing chain of events.
First hubs got grouchy that he had to, yet again, take me to the ER. He asked me where I wanted to go. I told him that we should prob go to the hospital ER but the walk in clinic two towns over would be open also. So rather than going to the hospital which was much much closer he decides to head to the walk in clinic. The waiting room was full to busting but I got to cut to the head of the line because "heart attack". After I had a team of women working on me doing vitals, EKGs etc one of the PAs told me that she knew me. Turns out she was the PA to my regular doc many years prior so we chatted a bit and she told me off for not going straight to the hospital. She told me that they were arranging transport for me since it might be a 'heart attack'. Righteo. 'Can I go to the bathroom before you stuff me in an ambulance?" "Sure." I go and do my business but when I hobble out of the bathroom not one but three ambulances, a fire truck, the police and a rescue unit were waiting for me. Turns out the staff decided that transport would take too long and they called 911 instead. I had most of the Wilmington rescue services there as well as three private ambulances. I got loaded onto the gurney nearest me and off I went to the hospital. You should have seen the bill sent to Medicare. Thousands of dollars.
The EMTs were great but I did get chewed out for not going straight to the hospital. He asked me why and I told him to talk to my husband. Then his cell phone went off and he had the Star Trek communicator ringtone which got us talking about scifi movies and made me very happy.
I spent the next several hours in the ER hooked up to various machines. Lots of blood was taken. They finally told me that I was going to be admitted for observation and more tests. The hospitalist, who is supposed to be my patient advocate,showed up and I took an instant dislike to him. I never saw him again even though I was there for three days. Hubs went home around 10-11pm while I was still waiting for an open room. I got formally admitted around midnight. This seems to be the norm for this hospital. I get held in the ER and if I am admitted it is usually after midnight. Must be some magical insurance thing.
Anyway, I never see my husband for the rest of my stay. I get a terse phone call the next day where he tells me he is sick and shouldn't show up. I beg my son to come and bring me a huge latte from Starbucks. So there I am by myself in the hospital room, hopped up on pain meds and now suffering from sleep deprivation. Since I'm in the cardiac wing they do vitals every couple of hours rather than letting you sleep any length of time. In comes the Mr Cardiac Doc. He asks me a few innocuous questions then suddenly turns to me and forcefully announces "You are obese! You are going to die!" He said more after that but I have no recollection of anything else he said. All that rattled around in my brain was "You're fat and you're going to die!!" I think my mouth was hanging open but the day is pretty fuzzy. I had wanted to talk to him about my CFS/ME and the stress test he wanted to do. He started telling me about the treadmill and I interrupted him to tell him about the CFS/ME and how I couldn't walk on a treadmill and he launched into another rant "I've been doing this 27 years...." at which point I knew it was useless to try to talk to him. He saw me as a fat blob that he had to fix. A 5'2" 290lbs woman with chest pain. Of course I was going to die of heart failure. It didn't matter that I have excellent blood pressure. It didn't matter that my cholesterol numbers, while not perfect, are still within normal range. It didn't matter that I have no family history of heart problems. It didn't matter that I used to exercise every single day and was in great shape despite being fat (fit fat it's called and yes it is a thing). It didn't matter that I had gained most of my weight due to meds and steroids. It didn't matter that I can NOT exercise due to my illness. I HAD to walk on his stupid treadmill even though the stress test can be induced chemically. He was going to prove me wrong! Of course I knew I wouldn't make it very long on the treadmill so I'm like "Game on, asshole!".
So the next day comes and I'm scared. I haven't slept well in two days now. I've been on oxygen continuously "just in case". They keep alarming my bed but I've figured out how to turn it off and the nurses are too busy to notice. Dr Ahole has ordered a low fat no salt diet for me which when combined with the gluten free corn free diet leads to NO food choices so I'm now starving and caffeine deprived on top of everything. I get rousted out of bed and sent down to the cardiac lab. I have an ultrasound done of my heart which comes out pretty good and then I get sent over to the treadmill room. They put a harness on me. No one explains what is going on. They make me sign papers that I can't read. I'm freezing cold and they park me in a cold plastic seat with the johnny hanging open due to the harness. Loud rock music is blaring over my head. This isn't going to go well. I get left there for 20-30mins. I can feel myself descending into head bobbing territory. Finally the crew shows up: the nurse, Dr A'hole and the nuclear med nurse. Dr A'hole proceeds to tell me how great I'm going to do on the treadmill. I mumble "uh huh" and go over to it and climb on. They start it and already it is going to fast. My normal gait is much slower. Then they incline it. I almost burst out laughing. "Oh this is going to be good!" runs through my head. I'm holding onto the handle bar for dear life and am already breathing heavily. I time the breath to the steps. Then the ataxia starts. First my feet start dragging. Then I start staring at my hands gripped onto the handlebars. My head starts bobbing in rhythm to my feet. All three of them panic. Dr Ahole is yelling "Shut it off! Shut it off! She is going to pass out!" The nurse is scrambling to shut down the equipment and the treadmill. The nuclear med nurse who is a burly guy is trying to catch me and inject me at the same time. The doc tries to put a chair behind me on the treadmill but the nurse waves him off because she doesn't want the treadmill damaged (fuck the patient). They manage to get the radioactive dye into me and me onto the gurney and now I can't speak. The nurse is asking what happened and I manage "Ataxia. Ataxia starts when I exercise too much." She was confused as she had never heard of it but Dr A'hole knew what it was. They covered me in blankets and of course part 2 of ataxia is a panic attack. I still had no idea what was going on. I didn't know what they shot me up with. I didn't know what was supposed to happen next. They covered me in blankets and left me alone in the room again. I could hear Dr. A'hole on the phone transcribing his notes on my disastrous treadmill episode. I had lasted 1 min and 9sec. They had to stop the test early so the data might not be useful. "Fuck you Doc! I showed you! Asshole!" I wanted to scream at him. I did end up getting stuffed into an imaging machine while having a panic attack. I was a mess. Nothing like being completely at the mercy of an abusive doctor. It was a horrendous experience. Having no family there made it worse. God knows where hubs was. I never saw the cardiac doc again. Whew!
When I saw the floor doc, he told me that he had reviewed my chart and tests and thought I was probably having gastritis (inflammation of the lining of the gut) from taking Celebrex for four years straight. He doubted that I had anything wrong with my heart but I still had to do the second part of the stress test. However, no one could tell me what that second part entailed. He asked me how I was doing and how I was feeling and if I was tired. I told him yes. I was exhausted and I couldn't eat anything they were giving me. A few hours later a nurse popped in to tell me that I could leave that afternoon if I promised to show up the following day for the rest of the stress test. I agreed and went home with my son.
This wasn't the end of the ordeal however. Oh no. Things couldn't be that easy. Hubs was running a 103F fever. He couldn't drive me anywhere so my son had to take another day off work to drive me in for stress test part two. With my brain now working, I asked the second nuclear med nurse to explain what was going on. Turns out the treadmill is done first, then you get shot up with dye and put in a special CT scanner that is just for imaging the heart. Then you go back on the second day when you are all relaxed, you get shot up with dye again and imaged again so the two can be compared to each other. The long waits I had the day before were for the dye to permeate my system so that they could do the imaging. Geesh if they had just taken the time to tell me what was going on the day before. We are done in under two hours.
Hubs is still sick. My son and I are ignoring him at this point as he is just sleeping in weird places all over the house. He built himself a pillow fort in one room and slept on the floor there. I asked him if he needed to go to the ER since he was whingeing so badly. He said no but he ended up at his docs the next day. Turns out he had a bad case of flu that had turned into pneumonia. So here I am fresh out of the hospital and supposed to take care of him. Not going to happen. He never asks how I am or what happened. If he talks at all he just complains about how awful he feels. I am livid.
I go to my doc for a follow up. He tells me that I have pulmonary hypertension and wants me to do a follow up with the cardiologist. I told him I flatly refuse to see the guy from the hospital. He asks what happened and I almost break down in tears so to avoid crying I don't tell him how nasty he was. Just that I want a different doctor. My doc explains the hypertension as a pressure difference between the heart and the tube feeding blood to the lung. Okay. So far so good. Until I get home and Google it. Holy mother of God I'm going to die! Turns out this is horrible. It can't be fixed and it is rare enough and deadly enough that there are specialty centers set up around the US to deal with this and everyone recommends going straight to them and not dicking around with a regular cardio doc. Luckily I'm near Boston and there is a center at Brigham and Women's where I've already been a patient so I'm in their system. I set up an appointment with them but it will be a month before they can get me in. I see the regular cardio doc in the meantime and he tells me that I don't have pulmonary hypertension and it was a freak data point in the echocardiogram. Whew! I still want the expert's opinion though just to put me completely at ease. The specialist confirms no hypertension. YAY!!
However, both docs insist that I start an exercise program. I try to explain CFS/ME to them and all we do is argue. I give in. They are cardio docs. Their mantra is diet and exercise. I've got the diet part down but I can not exercise and they just can't wrap their head around that. They both guessed that I have sleep apnea so now I have a apt at Faulkner Hospital in Boston for a sleep study but it isn't for another two months. Sigh. Hurry up and wait.
In the meantime, I'm completely wasted from the hospital ordeal, the cardiologists, the trip to Boston, being scared that I was going to die. I was actually planning out arrangements. I have the worst two months of my illness all year and winter hasn't even begun yet. Normally October is my best month of the year. Gah! Thank goodness my mum came for Thanksgiving. I slept so much while she was here. I started to feel more like my old self. Kid had gone on vaca to Mexico and hubs had rushed out to Chicago to help his brother who has cancer and took a turn for the worse. It was just me and Mum and it was great. No sched to keep. Relaxed meals. I could go back to bed whenever I wanted. It was great and I was bummed that it had to come to an end.
BTW, in case you were wondering. Hubs and I are talking to each other again. It took a while though. I was really really angry.
First hubs got grouchy that he had to, yet again, take me to the ER. He asked me where I wanted to go. I told him that we should prob go to the hospital ER but the walk in clinic two towns over would be open also. So rather than going to the hospital which was much much closer he decides to head to the walk in clinic. The waiting room was full to busting but I got to cut to the head of the line because "heart attack". After I had a team of women working on me doing vitals, EKGs etc one of the PAs told me that she knew me. Turns out she was the PA to my regular doc many years prior so we chatted a bit and she told me off for not going straight to the hospital. She told me that they were arranging transport for me since it might be a 'heart attack'. Righteo. 'Can I go to the bathroom before you stuff me in an ambulance?" "Sure." I go and do my business but when I hobble out of the bathroom not one but three ambulances, a fire truck, the police and a rescue unit were waiting for me. Turns out the staff decided that transport would take too long and they called 911 instead. I had most of the Wilmington rescue services there as well as three private ambulances. I got loaded onto the gurney nearest me and off I went to the hospital. You should have seen the bill sent to Medicare. Thousands of dollars.
The EMTs were great but I did get chewed out for not going straight to the hospital. He asked me why and I told him to talk to my husband. Then his cell phone went off and he had the Star Trek communicator ringtone which got us talking about scifi movies and made me very happy.
I spent the next several hours in the ER hooked up to various machines. Lots of blood was taken. They finally told me that I was going to be admitted for observation and more tests. The hospitalist, who is supposed to be my patient advocate,showed up and I took an instant dislike to him. I never saw him again even though I was there for three days. Hubs went home around 10-11pm while I was still waiting for an open room. I got formally admitted around midnight. This seems to be the norm for this hospital. I get held in the ER and if I am admitted it is usually after midnight. Must be some magical insurance thing.
Anyway, I never see my husband for the rest of my stay. I get a terse phone call the next day where he tells me he is sick and shouldn't show up. I beg my son to come and bring me a huge latte from Starbucks. So there I am by myself in the hospital room, hopped up on pain meds and now suffering from sleep deprivation. Since I'm in the cardiac wing they do vitals every couple of hours rather than letting you sleep any length of time. In comes the Mr Cardiac Doc. He asks me a few innocuous questions then suddenly turns to me and forcefully announces "You are obese! You are going to die!" He said more after that but I have no recollection of anything else he said. All that rattled around in my brain was "You're fat and you're going to die!!" I think my mouth was hanging open but the day is pretty fuzzy. I had wanted to talk to him about my CFS/ME and the stress test he wanted to do. He started telling me about the treadmill and I interrupted him to tell him about the CFS/ME and how I couldn't walk on a treadmill and he launched into another rant "I've been doing this 27 years...." at which point I knew it was useless to try to talk to him. He saw me as a fat blob that he had to fix. A 5'2" 290lbs woman with chest pain. Of course I was going to die of heart failure. It didn't matter that I have excellent blood pressure. It didn't matter that my cholesterol numbers, while not perfect, are still within normal range. It didn't matter that I have no family history of heart problems. It didn't matter that I used to exercise every single day and was in great shape despite being fat (fit fat it's called and yes it is a thing). It didn't matter that I had gained most of my weight due to meds and steroids. It didn't matter that I can NOT exercise due to my illness. I HAD to walk on his stupid treadmill even though the stress test can be induced chemically. He was going to prove me wrong! Of course I knew I wouldn't make it very long on the treadmill so I'm like "Game on, asshole!".
So the next day comes and I'm scared. I haven't slept well in two days now. I've been on oxygen continuously "just in case". They keep alarming my bed but I've figured out how to turn it off and the nurses are too busy to notice. Dr Ahole has ordered a low fat no salt diet for me which when combined with the gluten free corn free diet leads to NO food choices so I'm now starving and caffeine deprived on top of everything. I get rousted out of bed and sent down to the cardiac lab. I have an ultrasound done of my heart which comes out pretty good and then I get sent over to the treadmill room. They put a harness on me. No one explains what is going on. They make me sign papers that I can't read. I'm freezing cold and they park me in a cold plastic seat with the johnny hanging open due to the harness. Loud rock music is blaring over my head. This isn't going to go well. I get left there for 20-30mins. I can feel myself descending into head bobbing territory. Finally the crew shows up: the nurse, Dr A'hole and the nuclear med nurse. Dr A'hole proceeds to tell me how great I'm going to do on the treadmill. I mumble "uh huh" and go over to it and climb on. They start it and already it is going to fast. My normal gait is much slower. Then they incline it. I almost burst out laughing. "Oh this is going to be good!" runs through my head. I'm holding onto the handle bar for dear life and am already breathing heavily. I time the breath to the steps. Then the ataxia starts. First my feet start dragging. Then I start staring at my hands gripped onto the handlebars. My head starts bobbing in rhythm to my feet. All three of them panic. Dr Ahole is yelling "Shut it off! Shut it off! She is going to pass out!" The nurse is scrambling to shut down the equipment and the treadmill. The nuclear med nurse who is a burly guy is trying to catch me and inject me at the same time. The doc tries to put a chair behind me on the treadmill but the nurse waves him off because she doesn't want the treadmill damaged (fuck the patient). They manage to get the radioactive dye into me and me onto the gurney and now I can't speak. The nurse is asking what happened and I manage "Ataxia. Ataxia starts when I exercise too much." She was confused as she had never heard of it but Dr A'hole knew what it was. They covered me in blankets and of course part 2 of ataxia is a panic attack. I still had no idea what was going on. I didn't know what they shot me up with. I didn't know what was supposed to happen next. They covered me in blankets and left me alone in the room again. I could hear Dr. A'hole on the phone transcribing his notes on my disastrous treadmill episode. I had lasted 1 min and 9sec. They had to stop the test early so the data might not be useful. "Fuck you Doc! I showed you! Asshole!" I wanted to scream at him. I did end up getting stuffed into an imaging machine while having a panic attack. I was a mess. Nothing like being completely at the mercy of an abusive doctor. It was a horrendous experience. Having no family there made it worse. God knows where hubs was. I never saw the cardiac doc again. Whew!
When I saw the floor doc, he told me that he had reviewed my chart and tests and thought I was probably having gastritis (inflammation of the lining of the gut) from taking Celebrex for four years straight. He doubted that I had anything wrong with my heart but I still had to do the second part of the stress test. However, no one could tell me what that second part entailed. He asked me how I was doing and how I was feeling and if I was tired. I told him yes. I was exhausted and I couldn't eat anything they were giving me. A few hours later a nurse popped in to tell me that I could leave that afternoon if I promised to show up the following day for the rest of the stress test. I agreed and went home with my son.
This wasn't the end of the ordeal however. Oh no. Things couldn't be that easy. Hubs was running a 103F fever. He couldn't drive me anywhere so my son had to take another day off work to drive me in for stress test part two. With my brain now working, I asked the second nuclear med nurse to explain what was going on. Turns out the treadmill is done first, then you get shot up with dye and put in a special CT scanner that is just for imaging the heart. Then you go back on the second day when you are all relaxed, you get shot up with dye again and imaged again so the two can be compared to each other. The long waits I had the day before were for the dye to permeate my system so that they could do the imaging. Geesh if they had just taken the time to tell me what was going on the day before. We are done in under two hours.
Hubs is still sick. My son and I are ignoring him at this point as he is just sleeping in weird places all over the house. He built himself a pillow fort in one room and slept on the floor there. I asked him if he needed to go to the ER since he was whingeing so badly. He said no but he ended up at his docs the next day. Turns out he had a bad case of flu that had turned into pneumonia. So here I am fresh out of the hospital and supposed to take care of him. Not going to happen. He never asks how I am or what happened. If he talks at all he just complains about how awful he feels. I am livid.
I go to my doc for a follow up. He tells me that I have pulmonary hypertension and wants me to do a follow up with the cardiologist. I told him I flatly refuse to see the guy from the hospital. He asks what happened and I almost break down in tears so to avoid crying I don't tell him how nasty he was. Just that I want a different doctor. My doc explains the hypertension as a pressure difference between the heart and the tube feeding blood to the lung. Okay. So far so good. Until I get home and Google it. Holy mother of God I'm going to die! Turns out this is horrible. It can't be fixed and it is rare enough and deadly enough that there are specialty centers set up around the US to deal with this and everyone recommends going straight to them and not dicking around with a regular cardio doc. Luckily I'm near Boston and there is a center at Brigham and Women's where I've already been a patient so I'm in their system. I set up an appointment with them but it will be a month before they can get me in. I see the regular cardio doc in the meantime and he tells me that I don't have pulmonary hypertension and it was a freak data point in the echocardiogram. Whew! I still want the expert's opinion though just to put me completely at ease. The specialist confirms no hypertension. YAY!!
However, both docs insist that I start an exercise program. I try to explain CFS/ME to them and all we do is argue. I give in. They are cardio docs. Their mantra is diet and exercise. I've got the diet part down but I can not exercise and they just can't wrap their head around that. They both guessed that I have sleep apnea so now I have a apt at Faulkner Hospital in Boston for a sleep study but it isn't for another two months. Sigh. Hurry up and wait.
In the meantime, I'm completely wasted from the hospital ordeal, the cardiologists, the trip to Boston, being scared that I was going to die. I was actually planning out arrangements. I have the worst two months of my illness all year and winter hasn't even begun yet. Normally October is my best month of the year. Gah! Thank goodness my mum came for Thanksgiving. I slept so much while she was here. I started to feel more like my old self. Kid had gone on vaca to Mexico and hubs had rushed out to Chicago to help his brother who has cancer and took a turn for the worse. It was just me and Mum and it was great. No sched to keep. Relaxed meals. I could go back to bed whenever I wanted. It was great and I was bummed that it had to come to an end.
BTW, in case you were wondering. Hubs and I are talking to each other again. It took a while though. I was really really angry.
 |
| Fuck CFS! |
Saturday, August 22, 2015
The Downward Spiral
I'm in a prolonged crash. It has been a crappy year for me. I had a bad sinus infection this past spring and I had to do several courses of antibiotics to get rid of it which messed up my stomach. Then due to the insane weather here and my weird sleep schedule I haven't been able to sunbathe to catch up on my vit D. To top it all off I've had several super heavy periods that needed prescription progesterone to stop. Each of them sent my already low iron levels into the basement. It has been hot and humid for weeks now which makes me so much worse. Even in the AC I'm sitting directly in front of a fan. The AC unit in my bedroom is so old it no longer dehumidifies the air so while it is cooler in there it is still soggy. Those are the physical hits I've been dealing with this year.
The emotional hits haven't helped either. My CFS consulting doctor retired earlier than he told me he would. I thought I was going to have one last visit with him this year but I called and they told me had already left the practice. I shopped around and carefully chose a new treating CFS doctor and after herculean efforts on my part managed to get an intake appointment, extensive nutritional testing done and one follow up appointment. At the second appointment he gave me tons of paperwork. Reams of it, which I thought odd at the time. A week later I got a letter that the practice is closing due to financial difficulties. It has been a month since then and I still haven't received my medical records from them. They won't answer the phone and won't call me back.
So I tried calling my second choice and they don't take insurance of any kind. The intake process alone will be over $1000 out of pocket and I can't get a straight answer out of the office chick as to what their fee schedule is. I think I'm going to try back at the Marino Center again but with a different doctor.
Then to add insult to injury I get a letter from Prudential that they are reviewing my disability case so I have to assemble two years worth of medical records, sort them all out, make copies and write extensive explanations of my illness and why I can't possibly go back to work. GAH!!
I want to go on vacation. I want a house on the beach so I can just walk out the back door and straight into the water. I don't want to cook. I want to sleep and be quiet for at least a week. I don't want phones or internet or TV or paperwork or doctor appointments or endless minor arguments with hubs. I want to be alone and quiet and well fed and sun drenched and water logged. Even us sickos want a vacation.
The emotional hits haven't helped either. My CFS consulting doctor retired earlier than he told me he would. I thought I was going to have one last visit with him this year but I called and they told me had already left the practice. I shopped around and carefully chose a new treating CFS doctor and after herculean efforts on my part managed to get an intake appointment, extensive nutritional testing done and one follow up appointment. At the second appointment he gave me tons of paperwork. Reams of it, which I thought odd at the time. A week later I got a letter that the practice is closing due to financial difficulties. It has been a month since then and I still haven't received my medical records from them. They won't answer the phone and won't call me back.
So I tried calling my second choice and they don't take insurance of any kind. The intake process alone will be over $1000 out of pocket and I can't get a straight answer out of the office chick as to what their fee schedule is. I think I'm going to try back at the Marino Center again but with a different doctor.
Then to add insult to injury I get a letter from Prudential that they are reviewing my disability case so I have to assemble two years worth of medical records, sort them all out, make copies and write extensive explanations of my illness and why I can't possibly go back to work. GAH!!
I want to go on vacation. I want a house on the beach so I can just walk out the back door and straight into the water. I don't want to cook. I want to sleep and be quiet for at least a week. I don't want phones or internet or TV or paperwork or doctor appointments or endless minor arguments with hubs. I want to be alone and quiet and well fed and sun drenched and water logged. Even us sickos want a vacation.
Friday, August 9, 2013
Interval Training for CFS
Back when I was healthy, I used to do interval training. This is where you exercise as hard as you possibly can for a fixed amount of time and then drop to a low intensity for the same amount of time. It makes you feel like you are going to drop dead of a heart attack but it is very effective at increasing lung capacity and cardiac capacity. I used to do one minute intervals on a rowing machine.
CFS crash recovery reminds me of interval training. For every 30 minutes of light activity I have to lie down in a quiet shady spot for 30 minutes. This allows me to get things done without causing my symptoms to worsen. Activity is cumulative when it comes to crashes. Unless you allow yourself to return to baseline, it can quickly become a downward spiral.
I was fighting this crash. Mostly because I was doing so well prior. I assumed that I would recover in a couple of days and go back to having tons of energy. I pouted. I railed. And yesterday, after some crying, I accepted that this was going to be a prolonged crash and that I needed to start CFS interval training.
Today, each time I got the least bit brain foggy or tired, I went and laid down in a quiet spot. I never slept but would close my eyes and empty my mind. I would just shut off for a bit. After a while my eyes would open and a while later I would get restless and start fussing. Time to get up again. So my day went: breakfast, rest, dinner prep, rest, dress, rest, paperwork, rest and so on. My rhythm turned out to be 20-30mins on and 30 mins off. Paperwork causing brain fuzz much faster than physical work which I found surprisingly odd.
So, I'm plodding through my LTD paperwork. I got quite a bit done today. I had decided not to stress out over it and not to set any goals. With the intervals, I managed to get out three faxes, two emails and a letter all requesting medical records. I also managed to fill out four forms which are always extremely hard and taxing for me mentally. I also made a wonderful crockpot chicken dinner, scrambled eggs and sausage breakfast and managed to get dressed. WOOT!!
You can't deny that this method works. I'm slightly fogged tonight but I'm not the headbobbing incoherent mess that I was yesterday or the day before. So it looks like CFS interval training for me for the foreseeable future. I would love to say this crash will end soon but there is just no way to predict things with this illness and this is definitely a prolonged crash.
BTW, today is my last day on Xifaxin, an antibiotic. Tomorrow I load up on probiotics. I'll probably start my day with a large glass of clay to help flush stuff out. By tomorrow night, I'll be eating fermented pickles, beets, cabbage, and maybe some yogurt, kefir, and kombucha. One of the food bloggers I follow call kraut, kefir and kombucha the trifecta of ferments. She believes they will cure anything. Here's hoping!!
CFS crash recovery reminds me of interval training. For every 30 minutes of light activity I have to lie down in a quiet shady spot for 30 minutes. This allows me to get things done without causing my symptoms to worsen. Activity is cumulative when it comes to crashes. Unless you allow yourself to return to baseline, it can quickly become a downward spiral.
I was fighting this crash. Mostly because I was doing so well prior. I assumed that I would recover in a couple of days and go back to having tons of energy. I pouted. I railed. And yesterday, after some crying, I accepted that this was going to be a prolonged crash and that I needed to start CFS interval training.
Today, each time I got the least bit brain foggy or tired, I went and laid down in a quiet spot. I never slept but would close my eyes and empty my mind. I would just shut off for a bit. After a while my eyes would open and a while later I would get restless and start fussing. Time to get up again. So my day went: breakfast, rest, dinner prep, rest, dress, rest, paperwork, rest and so on. My rhythm turned out to be 20-30mins on and 30 mins off. Paperwork causing brain fuzz much faster than physical work which I found surprisingly odd.
So, I'm plodding through my LTD paperwork. I got quite a bit done today. I had decided not to stress out over it and not to set any goals. With the intervals, I managed to get out three faxes, two emails and a letter all requesting medical records. I also managed to fill out four forms which are always extremely hard and taxing for me mentally. I also made a wonderful crockpot chicken dinner, scrambled eggs and sausage breakfast and managed to get dressed. WOOT!!
You can't deny that this method works. I'm slightly fogged tonight but I'm not the headbobbing incoherent mess that I was yesterday or the day before. So it looks like CFS interval training for me for the foreseeable future. I would love to say this crash will end soon but there is just no way to predict things with this illness and this is definitely a prolonged crash.
BTW, today is my last day on Xifaxin, an antibiotic. Tomorrow I load up on probiotics. I'll probably start my day with a large glass of clay to help flush stuff out. By tomorrow night, I'll be eating fermented pickles, beets, cabbage, and maybe some yogurt, kefir, and kombucha. One of the food bloggers I follow call kraut, kefir and kombucha the trifecta of ferments. She believes they will cure anything. Here's hoping!!
Wednesday, August 7, 2013
Day 11
Yup. I'm still fucked up. I'm not helping myself though. As soon as I get a good day I think I'm all set and overdo it. Turns out this is one of those lllloooonnnggg recovery crashes. I have to be careful everyday or risk getting stuck in bed the next day. I slept most of Sunday.
Now to add fuel to the fire, I got notice from my private LTD that my case is up for review and I have to get all my records to them by the end of the month. This includes all medical notes, all test results, letters from my treating physicians, names, addresses, diagnoses, prognoses, why I can't work yada yada yada. I'm too messed up to read or think straight right now and I need to be able to put together a HUGE packet of information since this will cover the last three years. I need to get letters out to docs requesting they write letters; I have to get requests out to clinics and hospitals for test records; I HAVE to be organized. This is such a nightmare at this point. I'm now kicking myself for going swimming the other week. I could handle this if my brain still worked but it doesn't. At least I know better than to just fill out the dinky form they sent me. What I have to send them is more like my medical tome.
Now to add fuel to the fire, I got notice from my private LTD that my case is up for review and I have to get all my records to them by the end of the month. This includes all medical notes, all test results, letters from my treating physicians, names, addresses, diagnoses, prognoses, why I can't work yada yada yada. I'm too messed up to read or think straight right now and I need to be able to put together a HUGE packet of information since this will cover the last three years. I need to get letters out to docs requesting they write letters; I have to get requests out to clinics and hospitals for test records; I HAVE to be organized. This is such a nightmare at this point. I'm now kicking myself for going swimming the other week. I could handle this if my brain still worked but it doesn't. At least I know better than to just fill out the dinky form they sent me. What I have to send them is more like my medical tome.
Tuesday, March 5, 2013
SIBO and CFS
Coincidentally (a little too coincident if you ask me) there has been quite a bit published in both the journals and in the patient forums regarding gut health and CFS lately.
A group in Australia has done poop transplants on CFS patients and had a 70% success rate (undefined in the free abstract) and a 53% extended remission rate (again undefined in the free abstract available).
Dr. Hornig has been looking into the gut/CFS connection as well. She has already discovered problems in the guts of autistic kids which would explain why the GAPS diet works for some of them.
A group in Australia has done poop transplants on CFS patients and had a 70% success rate (undefined in the free abstract) and a 53% extended remission rate (again undefined in the free abstract available).
The GI microbiome and its role in Chronic Fatigue Syndrome: A summary of bacteriotherapy
Dr. Hornig has been looking into the gut/CFS connection as well. She has already discovered problems in the guts of autistic kids which would explain why the GAPS diet works for some of them.
Infection, Autoimmunity and PANDA’s: Dr. Hornig on Chronic Fatigue Syndrome at Dr. Klimas’ NSU Conference
There is also a study on guts health in CFS patients about to be published by Sanjay Shukla.
Here is Dr. Teitelbaum's take on CFS and SIBO.
Where am I going with all of this? Well I have continued my decline. I'm back to being on the couch unable to read, drive or even ride in the car short distances without having severe symptoms. The B12 shots and the Equalibrant aren't the cause of my miraculous recovery since I'm still taking them and I'm back to my shitty old self.
Today I got my test results back from Dr. Komaroff and a chronic bacterial infection is indicated by my blood work. He is suggesting I go to an infectious disease specialist. My treating CFS doc Dr. W. also thinks my miraculous recovery was due to bacterial infection of my guts. Then suddenly all this stuff shows up on the interwebs about SIBO. Coincidence!?! Weird if you ask me. So I've emailed my primary doc asking if he will send me to my infectious disease doc over at Tufts or just start treating me for SIBO. There are two treatments for it: 1) Xafaxin and/or 2) Paleo and/or GAPS diet. Another coincidence!?! I think I'll do both. I'll go on the Xafaxin since my insurance covers it and start GAPS. I had planned on doing GAPS about a year ago but was too sick to actually go through with it. If I can get a head start with the antibiotics then I'll be able to cook again and start with GAPS and end up on Paleo.
I'm groaning at this. I've been eating wheat products again because I've been craving them. My son and I sneak out the house while hubs is sleeping and go get roast beef sandwiches at 1am since we are both night owls. It has become a social ritual with us. We also go out for breakfast at two in the afternoon when we get up and go on random coffee runs. We have bonded over coffee and donuts. This all leads to toast, muffins, donuts and sandwiches. None of which I'll be able to eat on GAPS or Paleo. I won't be able to cheat for a long time. At least months if not a year or two. Since I am so limited in what I can do physically, food has become our social time. The time to get Mom out of the house for an hour or two. I will have to look hard for new rituals to replace these. Things we can do together where I won't be as tempted to eat cheat foods. Perhaps even stuff we can do together that doesn't involve food. If my head clears up we can always go for car rides together. He loves driving around.
I. Am. Dreading. The. Diet!!!! This is going to SUCK!!!
Sunday, December 23, 2012
Reveling in Slowness
I was stuck in bed today. Yesterday started with a trip to the ER for a bladder infection that came on rapidly and ended with a migraine. So today was a day spent in bed. You would think it makes me sad and in some ways it does. Hubs threw one of his predictable temper tantrums but was much better after some car therapy in the garage. I'm annoyed that I am THAT sick. AGAIN!
However, there are certain days that I revel in the slowness of being bed bound. Today was one of those days. I've renewed my love of radio broadcasts. I get to listen to NPR's Saturday lineup which consists of Wait Wait Don't Tell Me, the Radio Lab and the Vermont Story Slam. All of which are wonderful to listen to on a slow afternoon. It is a strange combination of geekyness and story telling. Today was an odd combination of grammar jokes, mathematics and personal stories. And it was wonderful!
While I listen to the radio, I get to watch the clouds floating around; forming and dissipating on their own schedule. I also get to figure out the air traffic patterns out of Logan for the day. This changes with the weather and wind so I'm never quite sure which way the planes will fly on any given day. Of course, during warmer weather I also get to listen to and watch the neighborhood birds. Today being the day after winter solstice, however, I got to watch the bare tree branches bobbing in the wind which is almost as calming as watching ocean waves crash on the beach but without the dramatic sound effects.
Today I was treated not only with sunshine through my window (a rarity this month) but also a spectacular sunset. If I had been doing my usual thing I would have missed the short lived glory of the brilliant red clouds. So sometimes I enjoy lying abed all day. I get to see life that occurs on a slower scale than we normally live it. All the subtly that we are too busy and too bustling to normally see. So despite being sicker than normal and hubs' hissy fits, I had a nice day. An enjoyable day. A day reveling in slowness.
However, there are certain days that I revel in the slowness of being bed bound. Today was one of those days. I've renewed my love of radio broadcasts. I get to listen to NPR's Saturday lineup which consists of Wait Wait Don't Tell Me, the Radio Lab and the Vermont Story Slam. All of which are wonderful to listen to on a slow afternoon. It is a strange combination of geekyness and story telling. Today was an odd combination of grammar jokes, mathematics and personal stories. And it was wonderful!
While I listen to the radio, I get to watch the clouds floating around; forming and dissipating on their own schedule. I also get to figure out the air traffic patterns out of Logan for the day. This changes with the weather and wind so I'm never quite sure which way the planes will fly on any given day. Of course, during warmer weather I also get to listen to and watch the neighborhood birds. Today being the day after winter solstice, however, I got to watch the bare tree branches bobbing in the wind which is almost as calming as watching ocean waves crash on the beach but without the dramatic sound effects.
Today I was treated not only with sunshine through my window (a rarity this month) but also a spectacular sunset. If I had been doing my usual thing I would have missed the short lived glory of the brilliant red clouds. So sometimes I enjoy lying abed all day. I get to see life that occurs on a slower scale than we normally live it. All the subtly that we are too busy and too bustling to normally see. So despite being sicker than normal and hubs' hissy fits, I had a nice day. An enjoyable day. A day reveling in slowness.
Monday, December 10, 2012
Run of Bad Luck
Well I'm in the middle of a fairly severe and lengthy crash. I keep hoping it will lift but I fear the winter crash has started and is here to stay until spring. Basically I have had a run of nasty luck.
I got over excited that my son moved back in and have been going out for breakfast, coffee and shopping trips way too frequently. I have been enjoying his company so much I didn't want to rest when I knew I should have been. He has cheered me up immensely and is a sheer pleasure to hang out with.
Then came Sandy and a second storm. Both of which quite literally put me in bed. Don't ask. I have no idea why low pressure systems tank me but it happens to other CFSers as well. In fact it rained most of November which meant no sunshine for me for the whole month. NOT good. I know sun exposure is crucial for my feeling better. I'm going to have to try out the local tanning bed and see if that works the same way as sitting out in the actual sun does.
Then I got a huge lump in my mouth and had to have it surgically removed. And two days later it became infected. I had to take antibiotics that made me nauseous and gave me heartburn. It made it really difficult to schedule taking those with my other meds and supplements and of course food. So I spent a week sick to my stomach and underfed. Brilliant.
I started new medicine for my never ending rash and herxed on it for several days. I've been eating way too much wheat which the doc pointed out is probably contributing to the continued rash problem. And I didn't make this connection why? Oh yeah, the old brain isn't working much these days.
Hubs came home with some crud or other. While I didn't get it I did crash even worse from the exposure. It didn't help that he literally coughed in my face when I climbed in bed the first night he had it. I ended up back in bed and sleeping from that. I slept 14 hours the first day after exposure. I could only stay awake a few hours at a time and I would have to go back to bed and sleep again. This has continued for several days. Today was the first day I managed to get through the entire day without sleeping for some chunk of it.
So I'm barely on my feet right now. I'm back to super simple breakfasts of boiled eggs and toast (I don't have to stand there and cook) and dinners out of the crockpot or my son cooks. I haven't been able to read. Very limited trips out of the house which has meant lots of canceled appointments. Absolutely no driving. Very limited walking. I'm trying to keep it under 50' but that doesn't always work out particularly when my son is driving (he is terrible at parking).
I think the worst fallout from this last nosedive is the fact that I've gotten into misunderstandings and fights on facebook. Between my being cranky and cantankerous and plain not being able to put two thoughts together to have an intelligent conversation, I haven't done so well in the communication department. Not sure I'm going to be able to repair those loose friendships. Might just have to chalk the loss up to lesson learned. Stay off FB or at least keep quiet when I'm doing so stinky.
Okay, I have to stop writing since my brain is shutting down again and I still have some food and supplements to order online before I get to go to bed. Night all!
I got over excited that my son moved back in and have been going out for breakfast, coffee and shopping trips way too frequently. I have been enjoying his company so much I didn't want to rest when I knew I should have been. He has cheered me up immensely and is a sheer pleasure to hang out with.
Then came Sandy and a second storm. Both of which quite literally put me in bed. Don't ask. I have no idea why low pressure systems tank me but it happens to other CFSers as well. In fact it rained most of November which meant no sunshine for me for the whole month. NOT good. I know sun exposure is crucial for my feeling better. I'm going to have to try out the local tanning bed and see if that works the same way as sitting out in the actual sun does.
Then I got a huge lump in my mouth and had to have it surgically removed. And two days later it became infected. I had to take antibiotics that made me nauseous and gave me heartburn. It made it really difficult to schedule taking those with my other meds and supplements and of course food. So I spent a week sick to my stomach and underfed. Brilliant.
I started new medicine for my never ending rash and herxed on it for several days. I've been eating way too much wheat which the doc pointed out is probably contributing to the continued rash problem. And I didn't make this connection why? Oh yeah, the old brain isn't working much these days.
Hubs came home with some crud or other. While I didn't get it I did crash even worse from the exposure. It didn't help that he literally coughed in my face when I climbed in bed the first night he had it. I ended up back in bed and sleeping from that. I slept 14 hours the first day after exposure. I could only stay awake a few hours at a time and I would have to go back to bed and sleep again. This has continued for several days. Today was the first day I managed to get through the entire day without sleeping for some chunk of it.
So I'm barely on my feet right now. I'm back to super simple breakfasts of boiled eggs and toast (I don't have to stand there and cook) and dinners out of the crockpot or my son cooks. I haven't been able to read. Very limited trips out of the house which has meant lots of canceled appointments. Absolutely no driving. Very limited walking. I'm trying to keep it under 50' but that doesn't always work out particularly when my son is driving (he is terrible at parking).
I think the worst fallout from this last nosedive is the fact that I've gotten into misunderstandings and fights on facebook. Between my being cranky and cantankerous and plain not being able to put two thoughts together to have an intelligent conversation, I haven't done so well in the communication department. Not sure I'm going to be able to repair those loose friendships. Might just have to chalk the loss up to lesson learned. Stay off FB or at least keep quiet when I'm doing so stinky.
Okay, I have to stop writing since my brain is shutting down again and I still have some food and supplements to order online before I get to go to bed. Night all!
Thursday, November 29, 2012
Minor Surgery
I've had a recurring small hard lump show up and disappear just inside my mouth. When it gets big enough I bite it by accident and I get a whopper of a blood blister and it gets even bigger.
I finally went to an oral surgeon and he removed it. So I've been recovering from minor surgery since Monday. Of course a normal person would be up, walking around, going to work and taking aspirin for the pain. Not me. I've spent the last three days unable to get off the couch. The first 24 hours my mouth hurt so badly even my teeth hurt and I had to crack open my stash of Tramadol. Today is the first day I managed to skip pain killers most of the day. I'll have to take some before I go to sleep.
Of course recovery for a CFSer isn't a simple thing. I can't detox from the surgery because I have to take pain meds. I can't sleep properly because I'm in pain, I can't wear my dental sleep appliance so I'm not sleeping well when I do get to sleep and I can't eat my regular diet since I can only tolerate soft foods. Of course eating a real food diet means I use my teeth all the time and chew a lot so I'm off my normal diet completely. So I'm tired, toxic, underfed and haven't drunk enough water. Holy crap. Such a simple thing becomes so difficult so fast.
They are biopsying the lump. I'll know the results next week. I had to return to the doc this morning because when I woke up my entire lip was swollen and my mouth hurt again. I'm scared to death of infection since once they start they just take off because of my compromised immune system. So he gave me antibiotics to take. This of course will mess up my stomach flora which I just got cranking by eating fermented foods and yogurts. Sigh.... I can't win sometimes...
However, there was some humor in my day. I cracked open my new med bottle to find it full of blue pills. I guess I'm stuck in the Matrix for a while longer....
I finally went to an oral surgeon and he removed it. So I've been recovering from minor surgery since Monday. Of course a normal person would be up, walking around, going to work and taking aspirin for the pain. Not me. I've spent the last three days unable to get off the couch. The first 24 hours my mouth hurt so badly even my teeth hurt and I had to crack open my stash of Tramadol. Today is the first day I managed to skip pain killers most of the day. I'll have to take some before I go to sleep.
Of course recovery for a CFSer isn't a simple thing. I can't detox from the surgery because I have to take pain meds. I can't sleep properly because I'm in pain, I can't wear my dental sleep appliance so I'm not sleeping well when I do get to sleep and I can't eat my regular diet since I can only tolerate soft foods. Of course eating a real food diet means I use my teeth all the time and chew a lot so I'm off my normal diet completely. So I'm tired, toxic, underfed and haven't drunk enough water. Holy crap. Such a simple thing becomes so difficult so fast.
They are biopsying the lump. I'll know the results next week. I had to return to the doc this morning because when I woke up my entire lip was swollen and my mouth hurt again. I'm scared to death of infection since once they start they just take off because of my compromised immune system. So he gave me antibiotics to take. This of course will mess up my stomach flora which I just got cranking by eating fermented foods and yogurts. Sigh.... I can't win sometimes...
However, there was some humor in my day. I cracked open my new med bottle to find it full of blue pills. I guess I'm stuck in the Matrix for a while longer....
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| http://en.wikipedia.org/wiki/The_Matrix |
Sunday, November 18, 2012
Crash Recovery
I can't explain what it is like to crash and then recover. It is like my entire body shuts down. I've been reading lately about the central nervous system's involvement in CFS. I know it has severely affected my brain. I guess the CNS involvement explains the weird constellation of crash symptoms.
I don't breath right. My husband has caught me not breathing at all. He'll suddenly yell at me "Breath!!". I can't swallow properly and chewing food becomes a problem. My eyesight gets really fuzzy. I'm severely dizzy. First my ability to find the right word goes, then spelling, then typing, then speech altogether. When I've been really bad thinking in complete sentences has been impossible. It is like my brain is swimming and is no longer connected to my body in any way. It is a strange sensation. One that I've only experienced prior to fainting. But during a crash it is constant.
When I'm coming out of it it is like a veil being lifted. Suddenly I can think again. Then I can see. Soon I'll be able to get off the couch and walk around without that weird floaty tilt-a-whirl feeling. I'm curious how far I'll come out of the pit. I won't know until tomorrow.
I don't breath right. My husband has caught me not breathing at all. He'll suddenly yell at me "Breath!!". I can't swallow properly and chewing food becomes a problem. My eyesight gets really fuzzy. I'm severely dizzy. First my ability to find the right word goes, then spelling, then typing, then speech altogether. When I've been really bad thinking in complete sentences has been impossible. It is like my brain is swimming and is no longer connected to my body in any way. It is a strange sensation. One that I've only experienced prior to fainting. But during a crash it is constant.
When I'm coming out of it it is like a veil being lifted. Suddenly I can think again. Then I can see. Soon I'll be able to get off the couch and walk around without that weird floaty tilt-a-whirl feeling. I'm curious how far I'll come out of the pit. I won't know until tomorrow.
Saturday, August 25, 2012
Sicko Update
Labs came back normal except for my inflammation markers. I've been too sick to dig out my old ones so I have no idea if they are more elevated than normal for me.
I was doing pretty good yesterday but spent almost all day today sleeping and resting. It is like my limbs are made of lead. I just don't have the energy to move them. Ugh. At least my head doesn't hurt anymore.
I was doing pretty good yesterday but spent almost all day today sleeping and resting. It is like my limbs are made of lead. I just don't have the energy to move them. Ugh. At least my head doesn't hurt anymore.
Thursday, July 19, 2012
Oh Stairs, You Tease Me So
We had a big BIG HUGE thunderstorm roll right over my house today. I was taking it easy recovering from all the excitement of yesterday's driving test. I was doing okay but I knew I was a bit tired. Then the boomers rolled in. Then the sky opened up and dumped tons of rain, 7"/hr according to the news. That is a lot of rain.
So I'm running around the house closing windows as fast as I can. They were all open since it has been close to 100F for the last several days running. I get the windows in the living room closed and then I hear it. The window in the loft is open and the rain is pelting the side of the house. I look out the window and it looks like I live under a waterfall. Sheets of water are cascading down the closed windows. Crap. I'm going to have to climb the stairs and close the window. Crap. Crap. Crap. I am SO going to pay for this.
It isn't that I can't climb stairs. I'm still physically capable of of it but for well over a year now stairs bring on PEM for me. Yup. Major crash after stair climbing of any sort. Even very slow stair climbing. I swear it is the change in altitude but I digress...
So I go up the stairs at a normal pace, I can see the rain blowing in through the open window. I get up there and close it. I wander around the loft a bit since I haven't been in that part of the house for many many months. I pick up a pile of books to loan to a friend. And suddenly I'm out of breath. I'm gasping as if I had just done several fast laps around the ice rink. Odd how this starts well after I've climbed the stairs. Then suddenly I'm sweating buckets. I take one last look around the loft and go back downstairs.
I close a few more windows and collapse on the couch. That was well over nine hours and several naps ago. I'm still here on the couch. I have no idea how long this crash is going to last. I'm still hot and sweaty and dearly dearly wish to take a shower. But alas this is going to my home for a while until I can recover enough to get up.
I've gone through the hoarse voice stage, sleeping stage, painful joints stage, fuzzy eyesight stage, aching calves stage, lost words stage. Maybe just maybe I'll be mobile by tomorrow. Then again it could just be wishful thinking on my part....
So I'm running around the house closing windows as fast as I can. They were all open since it has been close to 100F for the last several days running. I get the windows in the living room closed and then I hear it. The window in the loft is open and the rain is pelting the side of the house. I look out the window and it looks like I live under a waterfall. Sheets of water are cascading down the closed windows. Crap. I'm going to have to climb the stairs and close the window. Crap. Crap. Crap. I am SO going to pay for this.
It isn't that I can't climb stairs. I'm still physically capable of of it but for well over a year now stairs bring on PEM for me. Yup. Major crash after stair climbing of any sort. Even very slow stair climbing. I swear it is the change in altitude but I digress...
So I go up the stairs at a normal pace, I can see the rain blowing in through the open window. I get up there and close it. I wander around the loft a bit since I haven't been in that part of the house for many many months. I pick up a pile of books to loan to a friend. And suddenly I'm out of breath. I'm gasping as if I had just done several fast laps around the ice rink. Odd how this starts well after I've climbed the stairs. Then suddenly I'm sweating buckets. I take one last look around the loft and go back downstairs.
I close a few more windows and collapse on the couch. That was well over nine hours and several naps ago. I'm still here on the couch. I have no idea how long this crash is going to last. I'm still hot and sweaty and dearly dearly wish to take a shower. But alas this is going to my home for a while until I can recover enough to get up.
I've gone through the hoarse voice stage, sleeping stage, painful joints stage, fuzzy eyesight stage, aching calves stage, lost words stage. Maybe just maybe I'll be mobile by tomorrow. Then again it could just be wishful thinking on my part....
Tuesday, May 22, 2012
The Next Day
Doing a bit better today. I've finally managed to ditch the walker. Still hanging on to the odd countertop when the dizzies start. Still can't stand more than a minute. Made my breakfast sitting in my walker which conveniently makes me stove height.
Still haven't had "the talk" with hubs. However, yesterday's event has already been dubbed "the epic meltdown". He has asked me if it going to happen again several times so it is bugging him. I told him I was doing much better today so I seriously doubt it.
I think back and I still can't believe it happened. It SO uncharacteristic of me. I'm someone who didn't cry for 20 years straight. No kidding. I was keeping track. I'm so stable that I had a theater director once say that if I ever found a dead body under the stage I would just walk up to him and in a quiet calm voice let him know about it. So, yes, yesterday was brain chemistry gone wild day.
Now I just have to try to get hubs to understand.
Still haven't had "the talk" with hubs. However, yesterday's event has already been dubbed "the epic meltdown". He has asked me if it going to happen again several times so it is bugging him. I told him I was doing much better today so I seriously doubt it.
I think back and I still can't believe it happened. It SO uncharacteristic of me. I'm someone who didn't cry for 20 years straight. No kidding. I was keeping track. I'm so stable that I had a theater director once say that if I ever found a dead body under the stage I would just walk up to him and in a quiet calm voice let him know about it. So, yes, yesterday was brain chemistry gone wild day.
Now I just have to try to get hubs to understand.
Mother of All Tantrums
Dang. I seriously lost it today. I mean a full-on, lie on the floor, cry my heart out, melt down that would rival any two year old's tantrum. God I hate this illness.
Okay lets back up here a bit. I went away this weekend. I took a three hour trip to Vermont with hubs to visit our friends. I had a great time and I'm really glad I went. I knew I would be cooked when I got back but hey I really like visiting these guys. We had to take the truck which isn't my vehicle of choice for trips since it rides bumpy and it is loud which I knew would make me worse. However, because my kid took my car after he wrecked his own (he is okay) we didn't have any choice in the matter. So two three hour car trips, lots of talking, not getting enough sleep, not getting enough food, too much fun later, I'm crashing. Add to that, a trip to Cambridge for my IV and a trip to my chiro for my weekly adjustment and, hell yes, I was in bed by the time hubs got home from work today. Lets just say he was NOT pleased. I believe "fanfuckingtastic" was his exact words.
I asked for Chinese take out since I obviously couldn't cook. His reply was I get fajitas from Chili's or nothing. He just spent two hours in traffic trying to get home and he wasn't going to go to two places to pick up dinner. I guess he wanted fajitas, damn it. Being stuck in bed and barely able to talk this meant I had to agree or I get nothing for dinner. In the words of Kosh "And so it begins."
Hubs went to get the food and I fell asleep again. I wake up when he gets home. I'm now using my walker to get around. It takes me close to five minutes to get from the bedroom down the hall to the kitchen. My feet are dragging, my head is bobbing and I'm fast loosing command of my limbs. My speech is long gone. My ability to process information has all but crawled to a halt. I sit down. He plops a styrofoam container in front of me.
Now, fajitas require considerable dexterity to assemble and eat. I have a pile of tortillas, a pile of chicken, a pile of onions and four mini-containers full of condiments. I look like I'm in slow motion. I have to stare at the condiment cup in the styrofoam container, decide I need to pick it up and take the lid off, reach over, actually pick it up, wrestle the lid off, place the lid somewhere, find someplace to put the cup and actually place the cup down. This takes about a minute or so for one cup. I have to do this four times. Then I have to figure out where I can put down the tortillas since they are on top of the meat/onion pile. Then I have to actually do it. Now my food is finally laid out on the table so that I can start filling a tortilla with food so that I can eat it. I get a tortilla, find a spoon (hubs didn't give me a knife to work with), spread sour cream on the tortilla with the spoon, spread guacamole on it, sprinkle cheese on it, I manage to fish out some tomatoes from the pico de gaio, I balance the spoon in the styrofoam cartoon, I find the fork, I pick up the fork, I pick up a piece of chicken, and another and another (crap they are stuck together) and another. I put a few onions on the top. I am now shaking like crazy. I look like I have Parkinsons. I'm slumped over the table at an odd angle, my head is dropped to my chest, my hands are shaking. Now I am attempting to roll my bundle of food up, hold it together and get it to my mouth without having it explode.
At this point my brain implodes. This is too difficult for me. A plate of Chinese would be so much easier to handle. Instead I'm trying to do food origami with hands that can't even hold a cup. I throw the food down, burst into tears and hurl myself away from the table. I'm trying to run and hide but I can't control my body. I'm too tired. I'm too exhausted. Instead manage a few steps until I run out of countertop and end up going to my knees and then to the floor. So here I am, a 50 year old woman, sobbing her heart out face down in the middle of the kitchen floor. Hubs is still pissed so he ignores this for a bit hoping it will all go away. It doesn't. I get worse. He comes over and tells me to get up. Bwahahahaha!! Like I can do that. I keep sobbing. He starts circling me. A box of kleenex lands next to my head. He circles some more. He wants me up. He helps me to get seated. I'm still crying. He wants me up. He goes and gets my wheelchair and puts it next to me. He wants me up. He puts his hands out for me to grab so that I can get up. He gives up waiting for me to do it on my own and hauls me up and into the wheelchair. He wheels me back to the table. I'm still crying. He takes my food away and puts it onto a plate and cuts it up for me. He brings it back along with a glass of water. I grab the water cup with two hands and start drinking. It helped a little and I stop crying. I pick up the fork and try to get my limbs to behave and spear some chicken. I start crying again. I'm so horribly embarrassed. I'm so angry that I'm having so much trouble feeding myself. I finally manage to reduce the tears to sniffles and get some food in my mouth. I have to chew really well and slowly since my throat is now swollen and I can't swallow easily. I have to spit out a bit of stingy chicken. Hubs asks if it tastes okay and I tell him I can't swallow. He tells me to look up and straighten my head up. I hadn't realized how collapsed forward I was. My chin was almost on my chest. No wonder it was hard to swallow.
Hubs gets up and leave me to my dinner since I'm being all weird. My motions are all jerky. I'm eating with my mouth open because I keep forgetting to close it and chew at the same time. I can only concentrate on one movement at a time. He hates chewing noises. I'm chewing everything much more than normal because I don't want to choke. I need the food really pulverized so that I can swallow it. I slowly make my way through the plate of food sans tortillas until I finally run out. I think about an hour has passed since I woke up. I finish my water. He comes back to the table and asks me if I'm done. I still can't talk so I grunt and shove my plate away. He asks me if I want to go back to bed or sit on the couch. I've been in bed all afternoon and Dancing with the Stars finals is on tonight so I opt for the couch. He wheels me over to the two steps down to the living room. He helps me up from the chair and down the steps. I plop on the couch and get the remote control. TV on and me settled he goes off to do dishes and laundry. Other than the occasional "Can I get you anything?" question we don't talk the rest of the night. He is now safely ensconced in bed sleeping. I'm somewhat coherent. You'll have to forgive me if this post isn't written too well. Meh.
Another day in the life with chronic illness.
BTW, hubs and I will talk about this. I want to have a discussion with him about this. I need to apologize for my crap behavior. His behavior wasn't stellar either but I haven't decided how to broach that subject yet. He had a crappy ride home from work. He didn't want to go out again. Been there, done that myself. I know how bad traffic can be around here. I had to do the same commute for 12 years and know how shitty it can be so he gets some leeway with regards to that. But, I have a funny feeling that there is something left over from the weekend. He got weird with me when we were still in VT. I could feel something brewing just below the surface yesterday. My being in bed when he got home today was the proverbial last straw and he snapped. I need to find out what is going on underneath the grumpiness. Something was eating at him. This discussion will be put off for now though. I'm too sick to deal right now. There is no way I can enter into a verbal sparring match or do the mental gymnastics required to solve this problem. But this discussion will happen. It has to even if it has to wait until next week. Wish me luck.
Okay lets back up here a bit. I went away this weekend. I took a three hour trip to Vermont with hubs to visit our friends. I had a great time and I'm really glad I went. I knew I would be cooked when I got back but hey I really like visiting these guys. We had to take the truck which isn't my vehicle of choice for trips since it rides bumpy and it is loud which I knew would make me worse. However, because my kid took my car after he wrecked his own (he is okay) we didn't have any choice in the matter. So two three hour car trips, lots of talking, not getting enough sleep, not getting enough food, too much fun later, I'm crashing. Add to that, a trip to Cambridge for my IV and a trip to my chiro for my weekly adjustment and, hell yes, I was in bed by the time hubs got home from work today. Lets just say he was NOT pleased. I believe "fanfuckingtastic" was his exact words.
I asked for Chinese take out since I obviously couldn't cook. His reply was I get fajitas from Chili's or nothing. He just spent two hours in traffic trying to get home and he wasn't going to go to two places to pick up dinner. I guess he wanted fajitas, damn it. Being stuck in bed and barely able to talk this meant I had to agree or I get nothing for dinner. In the words of Kosh "And so it begins."
Hubs went to get the food and I fell asleep again. I wake up when he gets home. I'm now using my walker to get around. It takes me close to five minutes to get from the bedroom down the hall to the kitchen. My feet are dragging, my head is bobbing and I'm fast loosing command of my limbs. My speech is long gone. My ability to process information has all but crawled to a halt. I sit down. He plops a styrofoam container in front of me.
Now, fajitas require considerable dexterity to assemble and eat. I have a pile of tortillas, a pile of chicken, a pile of onions and four mini-containers full of condiments. I look like I'm in slow motion. I have to stare at the condiment cup in the styrofoam container, decide I need to pick it up and take the lid off, reach over, actually pick it up, wrestle the lid off, place the lid somewhere, find someplace to put the cup and actually place the cup down. This takes about a minute or so for one cup. I have to do this four times. Then I have to figure out where I can put down the tortillas since they are on top of the meat/onion pile. Then I have to actually do it. Now my food is finally laid out on the table so that I can start filling a tortilla with food so that I can eat it. I get a tortilla, find a spoon (hubs didn't give me a knife to work with), spread sour cream on the tortilla with the spoon, spread guacamole on it, sprinkle cheese on it, I manage to fish out some tomatoes from the pico de gaio, I balance the spoon in the styrofoam cartoon, I find the fork, I pick up the fork, I pick up a piece of chicken, and another and another (crap they are stuck together) and another. I put a few onions on the top. I am now shaking like crazy. I look like I have Parkinsons. I'm slumped over the table at an odd angle, my head is dropped to my chest, my hands are shaking. Now I am attempting to roll my bundle of food up, hold it together and get it to my mouth without having it explode.
At this point my brain implodes. This is too difficult for me. A plate of Chinese would be so much easier to handle. Instead I'm trying to do food origami with hands that can't even hold a cup. I throw the food down, burst into tears and hurl myself away from the table. I'm trying to run and hide but I can't control my body. I'm too tired. I'm too exhausted. Instead manage a few steps until I run out of countertop and end up going to my knees and then to the floor. So here I am, a 50 year old woman, sobbing her heart out face down in the middle of the kitchen floor. Hubs is still pissed so he ignores this for a bit hoping it will all go away. It doesn't. I get worse. He comes over and tells me to get up. Bwahahahaha!! Like I can do that. I keep sobbing. He starts circling me. A box of kleenex lands next to my head. He circles some more. He wants me up. He helps me to get seated. I'm still crying. He wants me up. He goes and gets my wheelchair and puts it next to me. He wants me up. He puts his hands out for me to grab so that I can get up. He gives up waiting for me to do it on my own and hauls me up and into the wheelchair. He wheels me back to the table. I'm still crying. He takes my food away and puts it onto a plate and cuts it up for me. He brings it back along with a glass of water. I grab the water cup with two hands and start drinking. It helped a little and I stop crying. I pick up the fork and try to get my limbs to behave and spear some chicken. I start crying again. I'm so horribly embarrassed. I'm so angry that I'm having so much trouble feeding myself. I finally manage to reduce the tears to sniffles and get some food in my mouth. I have to chew really well and slowly since my throat is now swollen and I can't swallow easily. I have to spit out a bit of stingy chicken. Hubs asks if it tastes okay and I tell him I can't swallow. He tells me to look up and straighten my head up. I hadn't realized how collapsed forward I was. My chin was almost on my chest. No wonder it was hard to swallow.
Hubs gets up and leave me to my dinner since I'm being all weird. My motions are all jerky. I'm eating with my mouth open because I keep forgetting to close it and chew at the same time. I can only concentrate on one movement at a time. He hates chewing noises. I'm chewing everything much more than normal because I don't want to choke. I need the food really pulverized so that I can swallow it. I slowly make my way through the plate of food sans tortillas until I finally run out. I think about an hour has passed since I woke up. I finish my water. He comes back to the table and asks me if I'm done. I still can't talk so I grunt and shove my plate away. He asks me if I want to go back to bed or sit on the couch. I've been in bed all afternoon and Dancing with the Stars finals is on tonight so I opt for the couch. He wheels me over to the two steps down to the living room. He helps me up from the chair and down the steps. I plop on the couch and get the remote control. TV on and me settled he goes off to do dishes and laundry. Other than the occasional "Can I get you anything?" question we don't talk the rest of the night. He is now safely ensconced in bed sleeping. I'm somewhat coherent. You'll have to forgive me if this post isn't written too well. Meh.
Another day in the life with chronic illness.
BTW, hubs and I will talk about this. I want to have a discussion with him about this. I need to apologize for my crap behavior. His behavior wasn't stellar either but I haven't decided how to broach that subject yet. He had a crappy ride home from work. He didn't want to go out again. Been there, done that myself. I know how bad traffic can be around here. I had to do the same commute for 12 years and know how shitty it can be so he gets some leeway with regards to that. But, I have a funny feeling that there is something left over from the weekend. He got weird with me when we were still in VT. I could feel something brewing just below the surface yesterday. My being in bed when he got home today was the proverbial last straw and he snapped. I need to find out what is going on underneath the grumpiness. Something was eating at him. This discussion will be put off for now though. I'm too sick to deal right now. There is no way I can enter into a verbal sparring match or do the mental gymnastics required to solve this problem. But this discussion will happen. It has to even if it has to wait until next week. Wish me luck.
Thursday, April 12, 2012
Slow Recovery
I am doing better. I still don't feel up to writing long blog posts though. I'm getting as much sun as I can. It is hard to find places in the yard where I can go topless without being an exhibitionist. I'm actually looking forward to when the trees leaf out so I can have some more privacy.
I'm sunning from 30-60mins a day. I'm at the 45th parallel if you were wondering. The Paleo diet has resulted in no burns and only a very slow tan just starting to form. While the sun exposure has the immediate effect of making me sleepy, I find that I have more energy over all. That combined with the glutathione IVs, diet and weekly chiropractic visits I'm seeing a definite upward trend. I'm well enough to get bored.
Another couple bits of good news, I'm driving very short trips across town (5-10mins). And, I'm reading trashy novels again. I last about an hour before getting wiped out. It has been such a pleasure to read again. I've over done it almost every day this week and had to sleep for several hours in the afternoon on two different days when normally I don't nap.
My skin rash is back with a vengeance so I'm ordering supplies so that I can try a poultice. I figured modern meds aren't working so lets try the old fashioned stuff.
I've seen a bunch of good movies including Hugo, Contagion and The Rebound. During my three month long crash, I watched all ten seasons of Stargate SG-1. I'm now watching Eureka (again), Bones, X-Files and Sliders. I'm also hooked on Person of Interest, Smash, Fringe, Scandal and, of course, Dancing with the Stars. I was really bummed Sherri Shepard got voted off this week. She is a way better dancer than Gladys Night (sorry Gladys).
Oh, I just got back from seeing a new dentist. They are much more accommodating. I loved my old dentist but he was on the second floor of a building with no elevator so no more seeing him. The new place is not only accessible but they are very concerned about my comfort in every sense of the word. They adjusted the temp of the treatment room, changed the speed of the chair so I wouldn't get dizzy, used numbing gel on my gums so the cleaning wouldn't hurt. They constantly asked how I was doing and if they could do anything else for me.
I also got some brand new treatments that weren't available from my old dentist. They checked my mouth with UV for cancer. They checked my teeth with a laser for cavities. They also had a new digital X-ray machine so I got a much lower dose of radiation (I hadn't had a full set of x-rays done in over ten years) and the images went straight to the computer. Yup the "film" was attached to the computer via USB cable. That was a bit weird but really cool for a tech nerd like me.
All in all a great experience at the dentist. Woohoo!! I didn't leave there white knuckled and with a headache. How great is that!?!
I'm sunning from 30-60mins a day. I'm at the 45th parallel if you were wondering. The Paleo diet has resulted in no burns and only a very slow tan just starting to form. While the sun exposure has the immediate effect of making me sleepy, I find that I have more energy over all. That combined with the glutathione IVs, diet and weekly chiropractic visits I'm seeing a definite upward trend. I'm well enough to get bored.
Another couple bits of good news, I'm driving very short trips across town (5-10mins). And, I'm reading trashy novels again. I last about an hour before getting wiped out. It has been such a pleasure to read again. I've over done it almost every day this week and had to sleep for several hours in the afternoon on two different days when normally I don't nap.
My skin rash is back with a vengeance so I'm ordering supplies so that I can try a poultice. I figured modern meds aren't working so lets try the old fashioned stuff.
I've seen a bunch of good movies including Hugo, Contagion and The Rebound. During my three month long crash, I watched all ten seasons of Stargate SG-1. I'm now watching Eureka (again), Bones, X-Files and Sliders. I'm also hooked on Person of Interest, Smash, Fringe, Scandal and, of course, Dancing with the Stars. I was really bummed Sherri Shepard got voted off this week. She is a way better dancer than Gladys Night (sorry Gladys).
Oh, I just got back from seeing a new dentist. They are much more accommodating. I loved my old dentist but he was on the second floor of a building with no elevator so no more seeing him. The new place is not only accessible but they are very concerned about my comfort in every sense of the word. They adjusted the temp of the treatment room, changed the speed of the chair so I wouldn't get dizzy, used numbing gel on my gums so the cleaning wouldn't hurt. They constantly asked how I was doing and if they could do anything else for me.
I also got some brand new treatments that weren't available from my old dentist. They checked my mouth with UV for cancer. They checked my teeth with a laser for cavities. They also had a new digital X-ray machine so I got a much lower dose of radiation (I hadn't had a full set of x-rays done in over ten years) and the images went straight to the computer. Yup the "film" was attached to the computer via USB cable. That was a bit weird but really cool for a tech nerd like me.
All in all a great experience at the dentist. Woohoo!! I didn't leave there white knuckled and with a headache. How great is that!?!
Friday, March 30, 2012
The Winter Doldrums
Well that was a spectacular three month crash. It started roughly January 1st. I thought I would recover if I just stayed in a bed a few days. Not a chance. By February, I was canceling most of my appointments. I am now behind in my ob/gyn, dentist and regular physician check ups. By mid-March I was bed bound and thinking that I just might pass from this earth. Yup. It was that bad. I spent a day almost comatose. I couldn't move. I could barely talk. Once every few hours I managed to flop over to my other side only to fall "asleep" again. I'm not sure if I was actually sleeping. My eyes were closed and my brain just floated in and out of consciousness. Kind of scary. Hubs was worried. All I know was that anything and everything made me worse.
Then, two miracles happened. I saw my chiropractor who did a major fix on my neck. I saw some instant results. My foot dropping/foot dragging walk went away. And within six hours I was sitting up and back on the computer. The next day was the first nice sunny day of 2012. I went out into my yard, found a private spot, took my top off and did a little topless sunbathing. I baked myself about half an hour a side for a full one hour of exposure. The only thing I had on was really short shorts. By the next day I was doing a few dishes, cooking and walking around the house unassisted. This was last week. Yesterday I drove for the first time since last year.
I'm still a bit of a mess. I can't read or write much without my brain rapidly turning to mush. I still can't walk any significant distances. A few tens of feet at a time. I still can't stand for long. Even riding in the car still makes me feel like I was on a tilt-a-whirl. But I'm better than I was.
So what happened?? Since I have been teetering on the edge of functionality it is very easy to see when things don't agree with me. Bad food. Bad sleep. Bad med reactions. They all put me in bed. Over the course of several chiropractic visits, we saw repeated near instant improvement of function with the adjustment of my neck. I have had several very serious neck injuries so my guess is that either nerve signals are being blocked or the flow of cerebral spinal fluid gets blocked or reduced. As soon as he gets my neck back into place, things start working again and I start to see rapid improvement in my condition. I have determined that I can NOT skip weekly chiro visits. If I do, I end up stuck in bed.
Theory number two: sunlight is good you. There are several points I want to make here and they are going to get jumbled up cuz my brain is starting to stutter so bear with me.
First, I ran across Stephanie's (an MIT prof) work last year. She claims that we need at least a half hour of sun exposure over most of our skin surface everyday to get the needed vitamin D into our system. The sun also generates sulfur in our bodies which is needed for glucose metabolism among other things.
See:
http://stephanie-on-health.blogspot.com/2010/09/8-is-skin-solar-powered-battery-for.html
http://stephanie-on-health.blogspot.com/2010/09/4-sulfur-and-glucose-metabolism.html
http://stephanie-on-health.blogspot.com/2009/10/3-basic-problem-impaired-glucose-uptake_10.html
There are probably other posts I've missed but her site is a treasure trove of information that I haven't been able to fully unpack yet. If my brain starts working again, you can be sure I'll be back reading her material again.
Second: Dr. Bell tracked his CFS patients for decades. He found that recovery took place beginning during the second year of illness. However, it was not a linear progression and often halted or reversed during the winter months. Where was his patients? In upstate NY. Even further north than me. They lived in a fairly isolated small town out in rural countryside so they probably all ate the same stuff and did the same things (big assumption on my part). So what is the only factor that varies on a cyclic basis like this?? Sun exposure.
Third: (I just found this out a couple of days ago) Going on a Paleo style diet causes chemical changes in the skin allowing people to stay out in the sun longer without burning. I had noticed this in myself last fall and assumed it was because of the CFS when in fact it was the change in diet.
So, linking all of this together in a very unscientific fashion educated guess kind of way, I've been trying to get out into the sun as much as possible. Last week was the first week that we had temps over 60F. You bet I was out on my deck as often as possible. And I seem to have had some very positive results from it! Of course this is all anecdotal. The Paleo diet might be a huge piece of this body chemistry puzzle. I just don't know. I haven't heard anything from anyone in the CFS community regarding their reactions to sun exposure. BTW, one odd thing, if I sit out in the sun for a long period of time I'm exhausted when I get back into the house and have to go sleep for a while. Something major is definitely going on. I just don't know what exactly.
My most recent round of blood work bears out the deficit of vitamin D in my system. I'm on the low side of normal even though I've been taking large doses of it all winter. I don't know if my body can't absorb it via the digestive route or I'm missing the sulfur that I need along with it. For me, direct sunlight exposure seems to be the best fix.
I was still walking and reading in late December so the decline didn't happen until after the winter solstice. My recovery happened at the vernal equinox. A coincidence?? We'll have to wait until next winter to see if I have another winter crash to confirm my hypothesis.
In the meantime, I'm looking forward to having my morning tea on the deck tomorrow. It is going to be 50F tomorrow so no topless sunbathing but there will definitely be some belly warming going on.
Then, two miracles happened. I saw my chiropractor who did a major fix on my neck. I saw some instant results. My foot dropping/foot dragging walk went away. And within six hours I was sitting up and back on the computer. The next day was the first nice sunny day of 2012. I went out into my yard, found a private spot, took my top off and did a little topless sunbathing. I baked myself about half an hour a side for a full one hour of exposure. The only thing I had on was really short shorts. By the next day I was doing a few dishes, cooking and walking around the house unassisted. This was last week. Yesterday I drove for the first time since last year.
I'm still a bit of a mess. I can't read or write much without my brain rapidly turning to mush. I still can't walk any significant distances. A few tens of feet at a time. I still can't stand for long. Even riding in the car still makes me feel like I was on a tilt-a-whirl. But I'm better than I was.
So what happened?? Since I have been teetering on the edge of functionality it is very easy to see when things don't agree with me. Bad food. Bad sleep. Bad med reactions. They all put me in bed. Over the course of several chiropractic visits, we saw repeated near instant improvement of function with the adjustment of my neck. I have had several very serious neck injuries so my guess is that either nerve signals are being blocked or the flow of cerebral spinal fluid gets blocked or reduced. As soon as he gets my neck back into place, things start working again and I start to see rapid improvement in my condition. I have determined that I can NOT skip weekly chiro visits. If I do, I end up stuck in bed.
Theory number two: sunlight is good you. There are several points I want to make here and they are going to get jumbled up cuz my brain is starting to stutter so bear with me.
First, I ran across Stephanie's (an MIT prof) work last year. She claims that we need at least a half hour of sun exposure over most of our skin surface everyday to get the needed vitamin D into our system. The sun also generates sulfur in our bodies which is needed for glucose metabolism among other things.
See:
http://stephanie-on-health.blogspot.com/2010/09/8-is-skin-solar-powered-battery-for.html
http://stephanie-on-health.blogspot.com/2010/09/4-sulfur-and-glucose-metabolism.html
http://stephanie-on-health.blogspot.com/2009/10/3-basic-problem-impaired-glucose-uptake_10.html
There are probably other posts I've missed but her site is a treasure trove of information that I haven't been able to fully unpack yet. If my brain starts working again, you can be sure I'll be back reading her material again.
Second: Dr. Bell tracked his CFS patients for decades. He found that recovery took place beginning during the second year of illness. However, it was not a linear progression and often halted or reversed during the winter months. Where was his patients? In upstate NY. Even further north than me. They lived in a fairly isolated small town out in rural countryside so they probably all ate the same stuff and did the same things (big assumption on my part). So what is the only factor that varies on a cyclic basis like this?? Sun exposure.
Third: (I just found this out a couple of days ago) Going on a Paleo style diet causes chemical changes in the skin allowing people to stay out in the sun longer without burning. I had noticed this in myself last fall and assumed it was because of the CFS when in fact it was the change in diet.
So, linking all of this together in a very unscientific fashion educated guess kind of way, I've been trying to get out into the sun as much as possible. Last week was the first week that we had temps over 60F. You bet I was out on my deck as often as possible. And I seem to have had some very positive results from it! Of course this is all anecdotal. The Paleo diet might be a huge piece of this body chemistry puzzle. I just don't know. I haven't heard anything from anyone in the CFS community regarding their reactions to sun exposure. BTW, one odd thing, if I sit out in the sun for a long period of time I'm exhausted when I get back into the house and have to go sleep for a while. Something major is definitely going on. I just don't know what exactly.
My most recent round of blood work bears out the deficit of vitamin D in my system. I'm on the low side of normal even though I've been taking large doses of it all winter. I don't know if my body can't absorb it via the digestive route or I'm missing the sulfur that I need along with it. For me, direct sunlight exposure seems to be the best fix.
I was still walking and reading in late December so the decline didn't happen until after the winter solstice. My recovery happened at the vernal equinox. A coincidence?? We'll have to wait until next winter to see if I have another winter crash to confirm my hypothesis.
In the meantime, I'm looking forward to having my morning tea on the deck tomorrow. It is going to be 50F tomorrow so no topless sunbathing but there will definitely be some belly warming going on.
Wednesday, March 14, 2012
Holding Pattern
Sorry I haven't posted much. I'm in the middle of a bad relapse going on three months now. Also had a couple of bad drug reactions. More later when I can write without my brain going convulsions afterwards.
Friday, January 13, 2012
On The Mend?
I had my physical last Friday. During that meeting I went downhill very rapidly. I figured a couple of days rest and I would be fine. But NO. I kept getting worse. I've spent every day this week in bed or on the couch. These last few days I've been too dizzy to even sit up for long. I certainly can't read or reason. Typing is a challenge. I have to erase just about as much as I type. Rest just wasn't fixing things this time.
My kid finally came back from visiting his girlfriend in another part of the country and I managed to get to the chiropractor this afternoon. He adjusted my upper back, my shoulder, my neck and my jawbone. After swearing at him profusely, I sat up and felt better instantly. As the evening has progressed I have had a few dizzy spells but it isn't continuous. I have periods of lucidity where my brain works for a little bit. I've been catching up on my blog reading. I've still got a ways to go but hope springs eternal and I've got the idea in my head that I'll be doing much better tomorrow morning. We'll see but things seem to be progressing in the right direction.
Oh and some good news: this new diet of mine resulted in my cholesterol numbers going down. Hehehe. Yup, eggs, butter and full fat dairy everyday and I've lost ten pounds and my cholesterol went down. Woohoo!! I'm just crossing my fingers that I'm well enough to start GAPS on Monday.
Tuesday, January 10, 2012
Crash Boom Bang
Sorry I haven't been writing. I've been stuck in bed. My neuro symptoms are back in full swing. More later when I'm doing better.
Sunday, December 4, 2011
A New Plan
I need a new plan. I am now in my third spectacular crash within the last six weeks. As soon as I start feeling better I start cooking, house cleaning and driving. And the inevitable happens. Why do I do this to myself? I guess I want to feel normal. I want to act normal. I want to have a clean kitchen to work in. I want good real food to eat. I want to make yogurt and bread from scratch. I want to drive myself to appointments. I want to be able to walk into the docs office under my own steam.
I spent last week driving myself around town. I went to the shrink, the chiropractor and the masseuse. I cooked yummy real food dinners and made myself omelets and sauteed kale for breakfast everyday. I picked my kid up from the bus stop. What was my downfall? I did the dishes. I was sick of the kitchen being a mess. On Friday I showered, dressed, made breakfast, went to a massage, did the dishes and picked up the kid. Wow!! I haven't done all that in one day in a dogs age. I got back from the bus stop and collapsed on the couch. I'm still there three days later. I've been using the walker to get around the house when I can even manage to get up. Why oh why?? I know better.
So I need a new plan. Instead of being driven by instinct, which apparently is out to get me, I need to come up with something more structured so I don't end up permanently stuck in bed. I also think I have to go over this game plan with hubby so that he understands what is going on and doesn't expect me to exceed my limits. Like someone said it is like having a car that only get $5 of gas per week. Once the gas is gone that's it for the week. I have to plan my trips better.
So.
Hum.
Now what?
I think forced resting is going to have to be part of this. What I did back in September worked well: do something then lie down for at least 20 minutes. So, shower: lie down. Cook: lie down. Dress: lie down. Drive: lie down. Etc. No cheating. I might have to set a timer to limit my internet activities when I first get up in the morning. It is like a drug. I have this urge to go online first thing. It often compresses my schedule when I have to go to an appointment and the rest periods are the first to go. I need to not do this. Facebook will still be there in the evening when I can take my time going through things.
And back to the no sugars, no grains, no cheating part of the diet. Back to at least a Paleo diet plan. I think I'm going to have to enlist my doctor or my nutritionist for help to incorporate all of the vegetables for Dr. Wahls diet. I need to be able to eat cruciferous vegetables without the heartburn or Prilosec.
The Plan:
Forced rest periods
Day off between appointments/trips
Make doc/nutritionist apt to take care of stomach probs
Back on Paleo diet with as much veg as I can handle comfortably
Goals:
Being able to cook breakfast and dinner each day
Make juice daily
Being able to make simple items such as yogurt and easy Paleo baked goods (baked goods reduces the urge to cheat on the diet)
9 cups of veg a day: 3 cruciferous, 3 mixed colors, 3 others/fruit
Being able to drive to local appointments
No more major crashes
I spent last week driving myself around town. I went to the shrink, the chiropractor and the masseuse. I cooked yummy real food dinners and made myself omelets and sauteed kale for breakfast everyday. I picked my kid up from the bus stop. What was my downfall? I did the dishes. I was sick of the kitchen being a mess. On Friday I showered, dressed, made breakfast, went to a massage, did the dishes and picked up the kid. Wow!! I haven't done all that in one day in a dogs age. I got back from the bus stop and collapsed on the couch. I'm still there three days later. I've been using the walker to get around the house when I can even manage to get up. Why oh why?? I know better.
So I need a new plan. Instead of being driven by instinct, which apparently is out to get me, I need to come up with something more structured so I don't end up permanently stuck in bed. I also think I have to go over this game plan with hubby so that he understands what is going on and doesn't expect me to exceed my limits. Like someone said it is like having a car that only get $5 of gas per week. Once the gas is gone that's it for the week. I have to plan my trips better.
So.
Hum.
Now what?
I think forced resting is going to have to be part of this. What I did back in September worked well: do something then lie down for at least 20 minutes. So, shower: lie down. Cook: lie down. Dress: lie down. Drive: lie down. Etc. No cheating. I might have to set a timer to limit my internet activities when I first get up in the morning. It is like a drug. I have this urge to go online first thing. It often compresses my schedule when I have to go to an appointment and the rest periods are the first to go. I need to not do this. Facebook will still be there in the evening when I can take my time going through things.
And back to the no sugars, no grains, no cheating part of the diet. Back to at least a Paleo diet plan. I think I'm going to have to enlist my doctor or my nutritionist for help to incorporate all of the vegetables for Dr. Wahls diet. I need to be able to eat cruciferous vegetables without the heartburn or Prilosec.
The Plan:
Forced rest periods
Day off between appointments/trips
Make doc/nutritionist apt to take care of stomach probs
Back on Paleo diet with as much veg as I can handle comfortably
Goals:
Being able to cook breakfast and dinner each day
Make juice daily
Being able to make simple items such as yogurt and easy Paleo baked goods (baked goods reduces the urge to cheat on the diet)
9 cups of veg a day: 3 cruciferous, 3 mixed colors, 3 others/fruit
Being able to drive to local appointments
No more major crashes
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