It's been a pretty rough and emotional two months. Plenty going on. My body doesn't do so well with transitions and changes in routine. So a big move was certainly a challenge. To say the least, the move has not gone as planned! Our new apartment had been freshly renovated when we moved in...freshly painted walls, newly installed appliances, and brand new hard wood floors throughout. Sounds great, right? Well, moving day came. I got to our apartment around 5:00 that day. It was a warm day, and though the apartment had air conditioning, it was still about 87 degrees inside. In addition, the fumes from the paint and floor varnish were overpowering. My body's reaction was dramatic, to say the least. I quickly became overheated and overwhelmed. I lost consciousness multiple times, reportedly stopped breathing several times, and had full body convulsions. I had to be carried out of the building.
That was July 26. Six weeks later, I'm still not living in our apartment. My incredible husband has spent all of this time trying to rid the apartment of fumes. We have tried everything you can think of. He's been living in a windtunnel with fans blowing. He lived with cut up onions spread around the apartment to absorb the fumes. Same for kitty litter. He scrubbed the floors with vinegar, vinegar and baking soda, and floor cleaner- multiple times. This involved moving all the furniture out of the way- multiple times. He sprayed vinegar and baking soda on every surface we own. After all that, I can spend about 20 minutes there before a migraine kicks in. And of course, for me, a migraine is a multi-day event. So I'm pretty scared of the place now. I've also had symptoms of mast cell activation, like early stage anaphylaxis, after being there too long. At this point, I'm not really seeing any improvement. We are finally at our wit's end and looking into breaking our lease and moving to a new apartment. We are seeking legal aid to get out of our lease. The place we are interested in moving to will be available by November 1, so we will still be living separately for a while (I'm staying at my mom's house for now.)
It's been a challenging time for us as a couple, not being able to live together or have a place that is ours. It's certainly been challenging for me, feeling like my illnesses are causing everyone so much grief - even more so than usual.
Of course, this has not been the only trouble I've been having, because I don't know how to only have one problem at a time!
I did a trial of Amitriptyline for migraine prevention. I took it for eight days at the lowest dose. Just to be interesting, I had a unusual, but not unheard of, side effect. I developed pretty severe insomnia. Usually, it is a sedating medication, but not for me! Even with extra doses of my night medications, I had very restless nights. The lack of sleep made me incredibly sick. So, so sick. My POTS was made 100 times worse, and I developed Inappropriate Sinus Tachycardia again. My heart rate was about 110 bpm at rest, instead of my usual 68 bpm. As if that weren't enough, I developed an infection during this time. The usual low grade fever and cold symptoms kicked in hard. And just to keep things interesting, I got trapped in a migraine cycle, too. This one lasted five days. Technically, it was three different migraines. After three days on Maxalt, I couldn't take anything as an abortive for the last two days (to avoid rebound migraines), so I just had to endure it. I also had a day where I couldn't stay conscious for most of the day. I've had to take my Midodrine and wear my compression hose again, just to stay conscious.
I'm only a few days out of that hellish time. I discontinued Amitriptyline (which evidently did NOT decrease my migraines). Many of my problems resolved with a good night's sleep. The Inappropriate Sinus Tachycardia went away overnight! What a relief. Unfortunately, the difficult time has set me back on my conditioning, so my POTS is a bit worse now. I'm working to get back to where I want to be. My conditioning also got worse from not being near my recumbent bike, since it's in the toxic apartment. We just got it moved back to my mom's house, so I can get back to daily exercise.
With my POTS worse again, I've had some trouble with the "Wall of Pain" again. That's what I call it when I'm going along, and all of a sudden, I hit a wall. I have to lie down and not move until the intense full-body pain, and frequently nausea, pass. I'm pretty sure this is a POTS symptom for me, as the Midodrine and compression hose seem to help.
I'm getting very frustrated by my "chemical sensitivities." Obviously the new apartment trouble. But also just fragrances whenever I leave the house. I went to the dentist. There was a scented candle lit. I had to take 2 Benadryl and hide in the bathroom while they put the candle out and blew a fan around. It never occurred to me to call ahead and ask for no fragrances to be used that day. I guess that's what I need to do, but I feel like I'm being so difficult!! I've even had this problem when visiting people's houses. I feel like, who am I to tell them not to use perfumes in their own home? I just don't want to cause people trouble like that. I'm also just really passive, and I don't know how to assert my needs. But I obviously need to get better at this if I want to be able to go anywhere. I know I could also get a mask. Maybe it would help a lot, but I'm not ready to do it yet. You know? My symptoms from fragrances are itchy eyes, nose, ears, and throat, which progresses to swelling in the throat and a deep cough with prolonged exposure.
One other thing I've noticed is that ever since my last surgery (18 months ago), I've had serious trouble lying flat on my back. This part will sound strange. At first, I only noticed it during sleep. If I sleep on my back, I have this intense dream that I can't wake up from. And the dreams always involve paralysis. I can usually avoid this by putting a fluffy pillow behind my back. The thing is, I seem to have this problem when I'm awake, but lying flat on my back, too. Frequently, for the cerebral hypoxia, I try to lie flat with my legs elevated. But I'm pretty sure it is actually making me worse now, because I get in this really weird state where I can barely move or respond. Turning on my side seems to help. It seems that this problem is from my new fusion, perhaps being fused from skull to C2, but no longer down to C4 anymore?
And no, I still haven't gotten follow-up scans or an appointment. How long do you think I can put it off? The expense is just not manageable right now. And did I mention, I will have four different health insurance plans this year? So much fun!
I actually still have other topics on my list to talk about, but this is probably enough for one day.
Thanks for reading my continuing saga. And I know I should stop apologizing so much, but I'm sorry for being so much trouble!
Sunday, September 7, 2014
Tuesday, June 24, 2014
It's Always Something
I have so much to update- I've been writing this post for two months! I just have trouble finding a time when I can seriously get my thoughts together and think clearly enough to write...or do almost anything else productive. Brain fog is still a major issue. I've heard that having Chiari malformation, cranio cervical instability, and basilar invagination, along with the major surgeries to correct them can cause symptoms of brain injury. There is a great article about brain injury recovery here: http://www.brainline.org/content/2011/07/lost-found-what-brain-injury-survivors-want-you-to-know.html. This article describes the strange set of cognitive deficits caused by brain injury. I struggle so much with thinking clearly, and sometimes feel like I will never be myself again. But I know in the past, my cognitive deficits have continued to improve at least two years after surgery. I may never be able to multi-task well again. But hopefully my cognition will improve with more time, and maybe I'll feel a bit more like my old self, and not some empty-headed dimwit. So, if I don't seem like myself lately, this can help to explain it.
Besides that, my body has been keeping me busy with one challenge after another. It does seem like I can never get a break. Lately, the biggest issues have been migraines and foot trouble, with a little sleep trouble, GI trouble, and angry mast cells for good measure.
I've been dealing with another issue the last couple months, but I am finally over it. I don't want to go into too much detail, but basically, over the years, I've been given a benzodiazepine to help with sleep. Over time, my body became dependent on them. So, I needed to get off of them, which can be really hard. Being me, the withdrawal was harder than expected, especially for the low dose I had been taking. It caused my poor dysfunctional autonomic nervous system to freak out even more. Luckily, I think I am finally past this and not using any benzodiazepines, ever again. I would suggest to anyone reading to avoid these types of drugs, if at all possible. The dependence and withdrawal are just too serious. These meds also cause rebound anxiety when they wear off. There are other alternatives for sleep that work for most people, and there are other ways of coping with intense anxiety. Just say no if you can, for your own sake!
I've been having a lot of trouble with my feet. First, my left ankle started acting up. It developed a bruise and swelling for no apparent reason, and was uncomfortable to walk on. Since my Easy Spirit walking shoes were getting pretty old, I thought it was a lack of support. Those walking shoes are the only thing that saved me last time my feet acted up, so I replaced them with an identical pair. Unfortunately, my feet got worse and worse. I developed the problem I had a couple years ago: metatarsalgia in my left ball of foot. I dug out my old custom-fit orthotics, and they were just as painful to walk in now as they were three years ago when I got them. I persisted with them, but my feet continued to get worse. I developed intense pain across the soles of my feet. Maybe plantar fasciitis, maybe some type of neuropathy. I also wondered if my Raynaud's in my feet was making things worse, since my feet always felt so cold. But even keeping my feet warm did not relieve the pain. So, we went out to find a new pair of shoes. Tried on tons of shoes. Bought what seemed to be the most comfortable pair, and tried them out around the apartment a few days. My feet still hurt or hurt worse. So we returned the shoes and repeated, twice. Finally, I settled on a pair, but my feet are still hypersensitive and painful. I've also had ankle pain, so I've been wearing ankle braces and arch supports on both feet. I also have insole pads in my shoes for extra support. I've done stretches and massage, heat and ice. Some things help a bit; some seem to make it worse. Sometimes it's worse in the mornings, sometimes at night. The foot pain still seems to move around and wax and wane. Either way, my activity has been quite limited by my foot pain at times. I will probably go to a specialty shoe store to try to get better shoes sometime. But we've had a whole lot of shoe shopping lately, so I'm putting it off a bit.
Migraines have sure been troublesome. I was trying out a supplement called Migrelief for a couple of months, at the recommendation of my psychiatrist. (I know that supplements are highly unregulated and frequently not effective, or even safe, but I failed all prescription migraine preventives.) The Migrelief really seemed to be working at first, but eventually, it became clear that it wasn't. At the beginning of this month, I developed an intractable migraine, combined with rebound migraines from taking the Maxalt too many days. You know it was bad, because I actually went to the urgent care clinic. They gave me a shot of Toradol, but the migraine didn't abate. So, I just had to wait it out without meds. It was pretty intensely painful for quite a few days, but it finally did pass. So, I began experimenting with another supplement called Butterbur (supposedly it is certified PA-free, so it should be safe). So far, the Butterbur has been very helpful. I just hope it keeps working. I also began tracking the barometric pressure- and I do seem to get a migraine-like headache every time the pressure changes quickly. But that type of migraine seems to go away without Maxalt, once the pressure stays stable for a while. So, my headache has officially become a barometer. Not much to do about this one, unless I want to move to a more temperate area. I am considering finding a doctor that would try Botox again. I had it done about 7 years ago, but I would be willing to try it again.
My mast cells really seem to flare up on their own a lot of the time. Not much to do about that, except take more Benadryl. And stick to the low histamine diet. I know a lot of people have had questions about this "crazy diet" I'm following, or why I can't eat what everyone else is eating. It makes a big difference if I follow it. But it's not digestive symptoms. I can digest a tomato just fine. But it makes my overall reactivity higher. I need to be able to tolerate exposure to air freshener in the hall or someone's cigarette smoke outside- things I can't avoid. And the only way I can tolerate the unavoidable exposures is if I stick to a low histamine diet. Histamine in food is a little complicated. The biggest rules are: not aged, fermented, cured, or leftover foods. No spinach, tomatoes, eggplant, avocado, strawberries, raspberries, yeast, vinegar, soy sauce, cashews, or yogurt. It is, of course, so much more complicated than this, but those are the biggest foods to avoid. I'm actually eating plenty healthy still, so I'm not too worried about these foods being left out. Of course, I would absolutely love to go crazy and eat a pizza, but it's just not good for me.
My digestion has mostly still been quite good. I love that so many days, I have no digestive symptoms!!! I'm still loving the Digestive Advantage: Intensive Bowel Support. I just really have to stick to my diet. When I stray from the diet, I frequently have trouble. If I've had a good few days, I can usually go out for a scoop of ice cream without much trouble. So that is my treat- and it's a pretty good one here in Wisconsin- delicious ice cream! Where I get into trouble is when I change one of my daily meals, or I try to eat "healthier" by eating a salad. I think I have finally learned my lesson about salad. It seems really good for you, but it's not good for me. A food isn't good for me if it makes me feel worse. I have added in some cooked zucchini, which is really easy to digest! Just need to stay away from salad!! Those raw veggies are nothing but trouble. And my favorite restaurant has been Sweet Tomatoes for years- you know, the giant salad bar restaurant? Just another thing I have to avoid.
Shortness of breath from POTS really drives me crazy. I can literally get short of breath from walking a few steps, from talking too much, or from eating a meal. And then, I can ride the recumbent bike for 35 minutes in the evening, and still be able to talk at the same time! It makes me seem so out of shape, but I know that's not it. My body just only cooperates when it wants to. I'm very glad though that my tachycardia is mostly under control these days. It still starts racing frequently, but not as fast as it used to. Also, my resting heart rate has been quite normal, as opposed to the inappropriate sinus tachycardia I had at rest for months after surgery. Recovery keeps plugging along, slow as it may be.
Sleep has been a bit of an issue. I'm still waking up frequently. Sometimes, it's nightmares, sometimes I wake up in a puddle of sweat. Other times I wake up with angry mast cells, so my eyes are swollen and puffy, and my whole body itches. Still other times, I have really scary neurological symptoms upon waking. These symptoms seem to be seizure-like activity.
If you're still reading, I am amazed. But I think that if I share everything going on here in my blog, then I don't feel the need to talk and talk about it in real life. I just assume that if people want to know how I'm really doing, they can read it here. I don't want to whine and complain and bore people with these issues in real life.
Ready for the good news? My overall daily time that I am functional has been really good recently! It requires a stimulant to wake my brain up, but my body has been cooperating. This past week has been the most active one in quite a while. I am trying to be very cautious in my optimism. Knowing that my condition constantly ebbs and flows, I have to protect myself. For now, I'm trying to just enjoy being able to get more done in a day, without trying to extrapolate what this means for the rest of my life.
In other news, we're planning for our move, which is in one month! We'll be moving back to the Chicago suburbs next month. Packing everything up, moving, and unpacking is a real challenge. I have to be very careful to pace myself, and never do too much at once, since I have caused myself a major setback in this situation in the past.
We are also considering getting a puppy again. I'm so hesitant, because I'm afraid I won't be able to take care of it by myself, especially after the trouble we had with our little Charlie last year. My heart wouldn't be able to handle falling in love with another dog, only to have to say goodbye. But you can never really know if a dog will end up being high-maintenance, if they'll let me get the sleep I need, or if they'll really be hypoallergenic. So, I guess I'm still pretty undecided on this one.
I'd like to say thank goodness for the affordable care act. We have a two month break between my husband's current position and his next position, meaning two months without employer health insurance. The cobra plan would have cost $4000 for the two month gap. On the health insurance marketplace, it looks like we'll pay about $300 each month. Of course, the coverage is not a plan we'd actually want to use, because it has an extremely high deductible and only 50% coinsurance. But that's not the point. I just want to have continuous coverage. I don't actually plan on using it during those two months. It's still very nice to know it will be there if needed.
Here's an article about living with chronic illness that I really enjoyed reading. I found everything in it applied to me. http://www.psychologytoday.com/blog/turning-straw-gold/201404/how-chronic-pain-and-illness-fan-the-flames-uncertainty I really love the message. I have to cope with immense uncertainty in life, which can cause anxiety and depression if you don't learn to accept it. The uncertainty of living with chronic illness is so widespread. It makes it very hard to plan your life.
Lastly, I'd like to say a huge thank you again to the caregivers in my life, the primary one right now being my husband, Gustavo. And every day before my marriage, my primary caregiver was my mom. My gosh, what would we do without our caregivers??? I certainly wouldn't be here today without them. I don't know how I would get the care I need or survive day-to-day challenges without them. I also would have no idea how to cope with the feelings of loss, disappointment, uncertainty, hopelessness, and worthlessness, without them. Not to mention, I could not support myself without them. I know of plenty of people from my support groups that do not have the kind of support that I have in life. I am so grateful that I have people that love and care for me every day. Here's an article about how to care for your caregiver: http://www.psychologytoday.com/blog/turning-straw-gold/201405/how-help-your-caregiver
Okay, since you stuck with me all of this time, here's some photos of my mom's new puppy, Lexie! I love that little girl!
Besides that, my body has been keeping me busy with one challenge after another. It does seem like I can never get a break. Lately, the biggest issues have been migraines and foot trouble, with a little sleep trouble, GI trouble, and angry mast cells for good measure.
I've been dealing with another issue the last couple months, but I am finally over it. I don't want to go into too much detail, but basically, over the years, I've been given a benzodiazepine to help with sleep. Over time, my body became dependent on them. So, I needed to get off of them, which can be really hard. Being me, the withdrawal was harder than expected, especially for the low dose I had been taking. It caused my poor dysfunctional autonomic nervous system to freak out even more. Luckily, I think I am finally past this and not using any benzodiazepines, ever again. I would suggest to anyone reading to avoid these types of drugs, if at all possible. The dependence and withdrawal are just too serious. These meds also cause rebound anxiety when they wear off. There are other alternatives for sleep that work for most people, and there are other ways of coping with intense anxiety. Just say no if you can, for your own sake!
I've been having a lot of trouble with my feet. First, my left ankle started acting up. It developed a bruise and swelling for no apparent reason, and was uncomfortable to walk on. Since my Easy Spirit walking shoes were getting pretty old, I thought it was a lack of support. Those walking shoes are the only thing that saved me last time my feet acted up, so I replaced them with an identical pair. Unfortunately, my feet got worse and worse. I developed the problem I had a couple years ago: metatarsalgia in my left ball of foot. I dug out my old custom-fit orthotics, and they were just as painful to walk in now as they were three years ago when I got them. I persisted with them, but my feet continued to get worse. I developed intense pain across the soles of my feet. Maybe plantar fasciitis, maybe some type of neuropathy. I also wondered if my Raynaud's in my feet was making things worse, since my feet always felt so cold. But even keeping my feet warm did not relieve the pain. So, we went out to find a new pair of shoes. Tried on tons of shoes. Bought what seemed to be the most comfortable pair, and tried them out around the apartment a few days. My feet still hurt or hurt worse. So we returned the shoes and repeated, twice. Finally, I settled on a pair, but my feet are still hypersensitive and painful. I've also had ankle pain, so I've been wearing ankle braces and arch supports on both feet. I also have insole pads in my shoes for extra support. I've done stretches and massage, heat and ice. Some things help a bit; some seem to make it worse. Sometimes it's worse in the mornings, sometimes at night. The foot pain still seems to move around and wax and wane. Either way, my activity has been quite limited by my foot pain at times. I will probably go to a specialty shoe store to try to get better shoes sometime. But we've had a whole lot of shoe shopping lately, so I'm putting it off a bit.
Migraines have sure been troublesome. I was trying out a supplement called Migrelief for a couple of months, at the recommendation of my psychiatrist. (I know that supplements are highly unregulated and frequently not effective, or even safe, but I failed all prescription migraine preventives.) The Migrelief really seemed to be working at first, but eventually, it became clear that it wasn't. At the beginning of this month, I developed an intractable migraine, combined with rebound migraines from taking the Maxalt too many days. You know it was bad, because I actually went to the urgent care clinic. They gave me a shot of Toradol, but the migraine didn't abate. So, I just had to wait it out without meds. It was pretty intensely painful for quite a few days, but it finally did pass. So, I began experimenting with another supplement called Butterbur (supposedly it is certified PA-free, so it should be safe). So far, the Butterbur has been very helpful. I just hope it keeps working. I also began tracking the barometric pressure- and I do seem to get a migraine-like headache every time the pressure changes quickly. But that type of migraine seems to go away without Maxalt, once the pressure stays stable for a while. So, my headache has officially become a barometer. Not much to do about this one, unless I want to move to a more temperate area. I am considering finding a doctor that would try Botox again. I had it done about 7 years ago, but I would be willing to try it again.
My mast cells really seem to flare up on their own a lot of the time. Not much to do about that, except take more Benadryl. And stick to the low histamine diet. I know a lot of people have had questions about this "crazy diet" I'm following, or why I can't eat what everyone else is eating. It makes a big difference if I follow it. But it's not digestive symptoms. I can digest a tomato just fine. But it makes my overall reactivity higher. I need to be able to tolerate exposure to air freshener in the hall or someone's cigarette smoke outside- things I can't avoid. And the only way I can tolerate the unavoidable exposures is if I stick to a low histamine diet. Histamine in food is a little complicated. The biggest rules are: not aged, fermented, cured, or leftover foods. No spinach, tomatoes, eggplant, avocado, strawberries, raspberries, yeast, vinegar, soy sauce, cashews, or yogurt. It is, of course, so much more complicated than this, but those are the biggest foods to avoid. I'm actually eating plenty healthy still, so I'm not too worried about these foods being left out. Of course, I would absolutely love to go crazy and eat a pizza, but it's just not good for me.
My digestion has mostly still been quite good. I love that so many days, I have no digestive symptoms!!! I'm still loving the Digestive Advantage: Intensive Bowel Support. I just really have to stick to my diet. When I stray from the diet, I frequently have trouble. If I've had a good few days, I can usually go out for a scoop of ice cream without much trouble. So that is my treat- and it's a pretty good one here in Wisconsin- delicious ice cream! Where I get into trouble is when I change one of my daily meals, or I try to eat "healthier" by eating a salad. I think I have finally learned my lesson about salad. It seems really good for you, but it's not good for me. A food isn't good for me if it makes me feel worse. I have added in some cooked zucchini, which is really easy to digest! Just need to stay away from salad!! Those raw veggies are nothing but trouble. And my favorite restaurant has been Sweet Tomatoes for years- you know, the giant salad bar restaurant? Just another thing I have to avoid.
Shortness of breath from POTS really drives me crazy. I can literally get short of breath from walking a few steps, from talking too much, or from eating a meal. And then, I can ride the recumbent bike for 35 minutes in the evening, and still be able to talk at the same time! It makes me seem so out of shape, but I know that's not it. My body just only cooperates when it wants to. I'm very glad though that my tachycardia is mostly under control these days. It still starts racing frequently, but not as fast as it used to. Also, my resting heart rate has been quite normal, as opposed to the inappropriate sinus tachycardia I had at rest for months after surgery. Recovery keeps plugging along, slow as it may be.
Sleep has been a bit of an issue. I'm still waking up frequently. Sometimes, it's nightmares, sometimes I wake up in a puddle of sweat. Other times I wake up with angry mast cells, so my eyes are swollen and puffy, and my whole body itches. Still other times, I have really scary neurological symptoms upon waking. These symptoms seem to be seizure-like activity.
If you're still reading, I am amazed. But I think that if I share everything going on here in my blog, then I don't feel the need to talk and talk about it in real life. I just assume that if people want to know how I'm really doing, they can read it here. I don't want to whine and complain and bore people with these issues in real life.
Ready for the good news? My overall daily time that I am functional has been really good recently! It requires a stimulant to wake my brain up, but my body has been cooperating. This past week has been the most active one in quite a while. I am trying to be very cautious in my optimism. Knowing that my condition constantly ebbs and flows, I have to protect myself. For now, I'm trying to just enjoy being able to get more done in a day, without trying to extrapolate what this means for the rest of my life.
In other news, we're planning for our move, which is in one month! We'll be moving back to the Chicago suburbs next month. Packing everything up, moving, and unpacking is a real challenge. I have to be very careful to pace myself, and never do too much at once, since I have caused myself a major setback in this situation in the past.
We are also considering getting a puppy again. I'm so hesitant, because I'm afraid I won't be able to take care of it by myself, especially after the trouble we had with our little Charlie last year. My heart wouldn't be able to handle falling in love with another dog, only to have to say goodbye. But you can never really know if a dog will end up being high-maintenance, if they'll let me get the sleep I need, or if they'll really be hypoallergenic. So, I guess I'm still pretty undecided on this one.
I'd like to say thank goodness for the affordable care act. We have a two month break between my husband's current position and his next position, meaning two months without employer health insurance. The cobra plan would have cost $4000 for the two month gap. On the health insurance marketplace, it looks like we'll pay about $300 each month. Of course, the coverage is not a plan we'd actually want to use, because it has an extremely high deductible and only 50% coinsurance. But that's not the point. I just want to have continuous coverage. I don't actually plan on using it during those two months. It's still very nice to know it will be there if needed.
Here's an article about living with chronic illness that I really enjoyed reading. I found everything in it applied to me. http://www.psychologytoday.com/blog/turning-straw-gold/201404/how-chronic-pain-and-illness-fan-the-flames-uncertainty I really love the message. I have to cope with immense uncertainty in life, which can cause anxiety and depression if you don't learn to accept it. The uncertainty of living with chronic illness is so widespread. It makes it very hard to plan your life.
Lastly, I'd like to say a huge thank you again to the caregivers in my life, the primary one right now being my husband, Gustavo. And every day before my marriage, my primary caregiver was my mom. My gosh, what would we do without our caregivers??? I certainly wouldn't be here today without them. I don't know how I would get the care I need or survive day-to-day challenges without them. I also would have no idea how to cope with the feelings of loss, disappointment, uncertainty, hopelessness, and worthlessness, without them. Not to mention, I could not support myself without them. I know of plenty of people from my support groups that do not have the kind of support that I have in life. I am so grateful that I have people that love and care for me every day. Here's an article about how to care for your caregiver: http://www.psychologytoday.com/blog/turning-straw-gold/201405/how-help-your-caregiver
Okay, since you stuck with me all of this time, here's some photos of my mom's new puppy, Lexie! I love that little girl!
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| Baby Lexie! |
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| Lexie and Dexter |
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| Lexie's sweet little face!!! |
Friday, March 28, 2014
Catching Up
It's been a rough
few months. In so many ways.
In late January, my grandma was diagnosed with stage 4 cancer. She passed away six weeks later. I’m very grateful that I was able to visit
her many times. I miss her so much. But I am so grateful that I had her in my
life for the last 30 years. She was very special to very many people, and will be dearly missed.
Then, last week, it became clear to us that our little dog, Charlie, was just too much for anyone in my family to handle. He is a very high energy dog, and at times he is destructive, even aggressive. It was such a difficult decision, but we drove him back to the farm where we got him last week. He is so sweet and loving much of the time, so it was really hard to say goodbye. He looked so sad and scared when we left him. It is really heart-breaking. I've sent an email to the breeder to see how he's adjusting to life on the farm.
So, many tears have been and continue to be shed.
My health has continued to be challenging. It has been just over a year since my last fusion revision.
Migraines: My migraines are happening between 10 and 15 days each month. They knock me out for the whole day. Treatment will be continued management with Maxalt, ice, and heat. The preventives really haven't been helpful or tolerable for me.
Mast Cells: My mast cells calmed down for a while, but are acting up again this week. Skin crawling and itching, bumpy rash on face and back, swollen eyelids and lips, itchy eyes, nose and throat. Also deep pain and intense fatigue may be attributed to mast cells. Treatment for now is managing with allergy medications, since there is no official diagnosis.
Consciousness and cognitive deficits: These are still a daily battle for me. I struggle to maintain consciousness many days, and I have so much trouble thinking clearly. I have had some recent success with low-dose Ritalin, which gives me 2-3 hours of relative clarity. Unfortunately, I usually have a crash as the medicine wears off. My energy drops off quickly, and I have pain all over, along with waves of nausea. This happens after any activity, really.
Muscle spasms: My neck and upper back muscles are still very angry. They require nearly daily massage and muscle relaxants. Even with these measures, I have a constant tension headache that ranges from a 4-8 on the 10 point pain scale.
Digestion: Definitely improved. I have to have small portions of easily digested foods throughout the day. I also have to take a daily probiotic capsule. (I use Digestive Advantage Intensive Bowel Support-from Amazon). I still have some bad days, but it is so much better!
My overall pain level hasn't been lower than a 4 for a while now. Frequently my body just hurts so much, all I can do is lay still and try to distract myself.
I'm sure there are many things I haven't mentioned, but it really is hard to think clearly, and is taking all of my energy and focus to get this out. I'm definitely living in a painful haze most of the time. But I'm in a place of emotional acceptance right now. I'm not fighting it. Just getting through each day as best as I can, with no plans to seek further treatment for anything in the near future. I am very grateful every day to have a family that supports me through this difficult life. I am very much looking forward to moving back to Illinois this summer, where I will be able to see family much more frequently, without the hassle of a long drive and packing bags.
I'll leave you with some photos of Grandma and Charlie.
Wednesday, December 4, 2013
NOT Giving Up
Okay. So, I've had a rough week month year decade? But the last few months have been especially hard due to digestive problems. But my digestive problems are finally easing up a bit!!! I'm finally eating 1500 calories every day!!! Yes. This is huge. My pain level is better when I get enough calories. My energy level is better when I get enough calories. My migraine frequency is definitely reduced when I get enough calories. Plus, my mood is so much better when I get enough calories. Who'd have thought? Starvation is bad for you! I feel so much sympathy for my friends with severe Gastroparesis, IBD, or food intolerances that cannot get enough calories in a day.
Basically, I got myself into trouble with elimination diets and trying to identify my food triggers. I kept eliminating problem foods until I had almost nothing left. I tried to follow a low FODMAP diet for IBS. I was also following a low fiber, low fat, low residue diet for Gastroparesis. I also added the low histamine diet for suspected mast cell reactions. But when you don't eat enough food, Gastroparesis actually gets worse. Your stomach shrinks and slows down when it isn't constantly forced to handle more food.
So, I started a new plan of taking in calories once an hour throughout my 12-hour day. I alternated between liquids and solids, with pretty small portions. I added Naked Fruit Juice for extra calories. I found a meal replacement drink called Orgain that is pretty healthy, and full of liquid calories without a bunch of sugar and artificial chemicals. (You can buy it at Whole Foods or on Amazon. It's pretty tasty-but quite expensive.) And I've started baking more breads, muffins, and cookies. This has really helped my digestion!
Finally, I'm starting to incorporate some fruits and vegetables. Applesauce is still the easiest and safest. But I've successfully eaten a few pears and small servings of tiny chopped broccoli. I've even been able to switch back to whole grains, little by little. It is not a great diet, but it's a start.
I almost forgot the strangest part about this! My weight has not changed. When I dropped down to 600 calories a day, I weighed 116 lbs. Now that I'm back to 1500-1600 calories a day, I weigh 116 lbs. Maybe this is why I didn't notice sooner how undernourished I was! My weight didn't drop at all. My clothes still fit. I don't know what to think of this. Calories in and calories out certainly do not determine my weight though. Just thought I'd throw this in there for others trying elimination diets. Just because you are maintaining your weight does NOT mean you are getting enough calories! Add them up and be sure you are getting enough to keep your body running. I use My Fitness Pal, an iPad app. Based on my age, weight, gender, activity level, and weight loss goals (maintenance), it determined I need about 1560 calories a day. If I burn calories with exercise, I need to make those up. It has really helped me.
I still eat mostly a soft foods and liquid diet. And I need to avoid high histamine foods, since I have such clear systemic reactions to those. But I usually can get my calories without the meal replacement drink. It takes a lot of effort and careful planning. I have to count my calories to be sure I hit my goal. But I can do it. YAY!!!
Okay...before we get carried away here, I have a lot of symptoms going on every day. My dysautonomia is still bad. I still have spells of reduced consciousness every day, and I still lose consciousness at times. The cerebral hypoperfusion is still such a huge problem for me. And my allergy/mast cell issues are still seeming to progress.
I am considering making an appointment at Rush in Chicago with their Allergy/Immunology department to see if they can evaluate and treat mast cell disease. But, due to my trauma related to doctors/hospitals/etc., I'm still putting it off. Testing could include a bone marrow biopsy, skin biopsies, and an endoscopy with biopsies. I would refuse those tests at this time.
Next week, I'm starting with a local allergist. I do not believe he will know anything about Mastocytosis or Mast Cell Activation Disorder. But, he should be able to test me for true IgE allergies, especially to dogs, since this is my biggest concern right now. Unfortunately, you're supposed to go seven days without antihistamines before the testing, and I have no idea how I will tolerate that. I'm currently taking Allegra, Zyrtec, Astepro, Nasalcrom, Benadryl, and sometimes Atarax every day. Yes, every day. More when I'm around Charlie. I have no idea how I will survive without them for even one day.
If I can survive until the testing, and I test positive, maybe I could start allergy shots (immunotherapy) to try to reduce my reactions to dogs. This would improve my quality of life so much, because I could live with my little Charlie again!!! Allergy shots would be a logistical nightmare, since you have to go in three times a week for six months...then once a week for three to five years. I usually cannot drive, and my hubby works, so this would be quite a challenge to figure out. Beyond that, the allergy shots themselves could trigger a mast cell reaction, in which case I wouldn't be able to tolerate them at all. But it's worth a try. Anything for Charlie.
On a totally different note, I haven't been able to start working yet. But, I have joined a book club! It meets once a month in the evening, so it's a very small commitment. I've only been once, but it is nice to get out and be around people.
I'll update after my appointment with the allergist next week. Thanks for caring enough to keep reading.
Basically, I got myself into trouble with elimination diets and trying to identify my food triggers. I kept eliminating problem foods until I had almost nothing left. I tried to follow a low FODMAP diet for IBS. I was also following a low fiber, low fat, low residue diet for Gastroparesis. I also added the low histamine diet for suspected mast cell reactions. But when you don't eat enough food, Gastroparesis actually gets worse. Your stomach shrinks and slows down when it isn't constantly forced to handle more food.
So, I started a new plan of taking in calories once an hour throughout my 12-hour day. I alternated between liquids and solids, with pretty small portions. I added Naked Fruit Juice for extra calories. I found a meal replacement drink called Orgain that is pretty healthy, and full of liquid calories without a bunch of sugar and artificial chemicals. (You can buy it at Whole Foods or on Amazon. It's pretty tasty-but quite expensive.) And I've started baking more breads, muffins, and cookies. This has really helped my digestion!
Finally, I'm starting to incorporate some fruits and vegetables. Applesauce is still the easiest and safest. But I've successfully eaten a few pears and small servings of tiny chopped broccoli. I've even been able to switch back to whole grains, little by little. It is not a great diet, but it's a start.
I almost forgot the strangest part about this! My weight has not changed. When I dropped down to 600 calories a day, I weighed 116 lbs. Now that I'm back to 1500-1600 calories a day, I weigh 116 lbs. Maybe this is why I didn't notice sooner how undernourished I was! My weight didn't drop at all. My clothes still fit. I don't know what to think of this. Calories in and calories out certainly do not determine my weight though. Just thought I'd throw this in there for others trying elimination diets. Just because you are maintaining your weight does NOT mean you are getting enough calories! Add them up and be sure you are getting enough to keep your body running. I use My Fitness Pal, an iPad app. Based on my age, weight, gender, activity level, and weight loss goals (maintenance), it determined I need about 1560 calories a day. If I burn calories with exercise, I need to make those up. It has really helped me.
I still eat mostly a soft foods and liquid diet. And I need to avoid high histamine foods, since I have such clear systemic reactions to those. But I usually can get my calories without the meal replacement drink. It takes a lot of effort and careful planning. I have to count my calories to be sure I hit my goal. But I can do it. YAY!!!
Okay...before we get carried away here, I have a lot of symptoms going on every day. My dysautonomia is still bad. I still have spells of reduced consciousness every day, and I still lose consciousness at times. The cerebral hypoperfusion is still such a huge problem for me. And my allergy/mast cell issues are still seeming to progress.
I am considering making an appointment at Rush in Chicago with their Allergy/Immunology department to see if they can evaluate and treat mast cell disease. But, due to my trauma related to doctors/hospitals/etc., I'm still putting it off. Testing could include a bone marrow biopsy, skin biopsies, and an endoscopy with biopsies. I would refuse those tests at this time.
Next week, I'm starting with a local allergist. I do not believe he will know anything about Mastocytosis or Mast Cell Activation Disorder. But, he should be able to test me for true IgE allergies, especially to dogs, since this is my biggest concern right now. Unfortunately, you're supposed to go seven days without antihistamines before the testing, and I have no idea how I will tolerate that. I'm currently taking Allegra, Zyrtec, Astepro, Nasalcrom, Benadryl, and sometimes Atarax every day. Yes, every day. More when I'm around Charlie. I have no idea how I will survive without them for even one day.
If I can survive until the testing, and I test positive, maybe I could start allergy shots (immunotherapy) to try to reduce my reactions to dogs. This would improve my quality of life so much, because I could live with my little Charlie again!!! Allergy shots would be a logistical nightmare, since you have to go in three times a week for six months...then once a week for three to five years. I usually cannot drive, and my hubby works, so this would be quite a challenge to figure out. Beyond that, the allergy shots themselves could trigger a mast cell reaction, in which case I wouldn't be able to tolerate them at all. But it's worth a try. Anything for Charlie.
On a totally different note, I haven't been able to start working yet. But, I have joined a book club! It meets once a month in the evening, so it's a very small commitment. I've only been once, but it is nice to get out and be around people.
I'll update after my appointment with the allergist next week. Thanks for caring enough to keep reading.
Tuesday, November 12, 2013
Giving Up
I can't handle this much longer. Everything is worse. My body is not working. I am mostly unable to digest food, with symptoms that seem to be from Gastroparesis. I have constant nausea. When I actually do eat, I quickly have the sensation of being full and still hungry at the same time.
Apparently, I was only eating 600-800 calories a day in October, while trying to identify food sensitivities. This was causing my daily migraines. So, with much effort, I am now up to 1100-1200 calories a day (soft foods and liquids). The migraines are actually improved. Apparently, my body doesn't like to be starved. My goal would be to get about 1600 calories a day, but just getting to 1200 is so hard with such intense nausea and fullness.
Everything else is quite horrible. I won't be having any follow-up for this last surgery. After 2 months of being given the run-around, I've learned that a Skype appointment is not an option for some stupid reason. And believe me, I'm not up for traveling by any means. I can barely take care of myself at home.
I still struggle to remain conscious most days.
I am so traumatized by doctors, hospitals, procedures, tests, and surgeries that I honestly refuse to see a gastroenterologist for these newer issues. I truly believe there is nothing that any doctor in the world can do to help me with any of my problems, and that I just need to manage this on my own.
My system is just so sensitive and easily overwhelmed by everything. A lot of this seems like mast cell symptoms. But that's something else I will just manage on my own. I don't have access to mast cell stabilizers, but I can sure self-medicate with antihistamines as needed.
I am just done. I'm done looking for elusive answers and treatments that end up making things worse. I just can't tolerate anything. Pain meds, migraine meds...they all cause mast cell reactions. My mast cell reactions are just getting stronger and stronger. A single whiff of fragrance can take me out. My sensitivity to high-histamine foods is just getting worse and worse. It feels very progressive to me.
I just have to survive as best I can, and hope that my body heals itself. There are no magical answers out there. There is no surgery that can help me. There is no test or procedure I'm willing to go through at this time. I am not up for any type of travel, so most of the expert doctors are out of reach. Perhaps one day, I'll go back to Dr. Francomano in Baltimore, since she clearly understands the GI motility issues and mast cell problems associated with EDS.
I am getting worse in many ways. I don't know how to handle it. But I'm done fighting it. I'm going back to bed now. Hoping for some type of escape. The suffering is just so intense. The constant migraine is fighting to come back...I have to figure out what the heck I can eat. I wish I could be done.
Monday, October 28, 2013
Just Keep Swimming
I know I haven't posted in a couple of months. I also haven't been very communicative in general. I guess it's just that I know people like to hear good news. It's been a challenging time - some good times, but a whole lot of bad times. I'm dealing with quite a few issues every day, and coping as best as I can.
I'm having a lot of migraines. Almost half of my days are migraine days right now. I've already flunked out of a headache clinic (we tried every treatment available), so I have only Maxalt (a triptan) to treat my migraines. The Maxalt generally does help. I certainly can't skip the Maxalt too often, because the migraine blows up and becomes unmanageable if I don't take the Maxalt as early as possible. Unfortunately, it makes me feel very drugged. It also makes me incredibly itchy (possibly a mast cell reaction). So, I have to take 2 Benadryl to be able to tolerate the Maxalt. So, migraine days are generally lost days. Additionally, if I have more than three migraine days in a row, I just have to tough it out to avoid rebound migraines from the Maxalt use. (Today is a day three migraine, so I'm really hoping for a break tomorrow!)
Another issue that's been challenging is my allergy (suspected mast cell) issues. The main symptoms are itching and swelling. But sometimes, the itching is so bad that it keeps me from sleeping at night, and the lack of restorative sleep triggers my dysautonomia severely. I'm also reacting more strongly to all of my allergic triggers. Unfortunately, this seems to include my sweet puppy, Charlie. Plenty of other symptoms could be related to a mast cell activation disease, but for now, I'm just calling these allergies. Benadryl is becoming my best friend. I'm trying to avoid foods that are naturally high in histamine to lower my overall histamine load, but I can't tell if it's helping. (This includes fermented foods, strawberries, leftover meats, and a bunch of other foods.)
Challenge #3: My digestive tract is a mess. My main symptom is severe bloating and pain. My chronic constipation is improved, and I'm no longer dependent on Miralax. But the bloating and associated pain are still so severe. I've already tried things like fiber supplements, digestive enzymes, and probiotics, but they don't seem to do anything. So, I started a food and symptom diary to try to figure out what is making me sick. Unfortunately, it seems to be a lot of foods. So far, rice, almond milk, potatoes, and chicken seem to be my safest foods. I initially tried a diet I've tried in the past, the Eating for IBS diet, which involves eliminating foods that are high in insoluble fiber, egg yolks, dairy, red meat, and fatty foods. This hasn't been enough. Next, I have eliminated foods that are high in FODMAPs. If you don't know about FODMAPs, there is lots of information out there. It is a scientifically proven approach to treating IBS. FODMAPs include foods like: apples, onion, garlic, honey, agave, wheat, dairy, legumes, pears, cruciferous vegetables, artificial sweeteners, sugar alcohols, and a lot of other foods. They are foods that contain high levels of short-chain carbohydrates, like lactose, fructose, fructans, galactans, and polyols. I had a lot of hope for this diet, and gave it a really solid try. Unfortunately for me, FODMAPs elimination has not been enough to eliminate my symptoms. I really cannot tolerate any fruits or vegetables right now. The pain is too severe. I can sometimes handle half a banana or some cooked spinach (ew!). My diet is one of constant experimentation. I don't do well with smoothies, which is really disappointing. But I'm considering trying juicing. It isn't as healthy as smoothies, but all of the hard-to-digest fiber is removed from the food, and you still get the other vitamins and nutrients. I have no idea if this will work. Some days, it really doesn't matter what I eat. Even when I eat my safest diet, I can still have symptoms. I wish I could just stop eating. On the other hand, it's hard not to think: if even this bland, boring, generally not-too-healthy food is making me sick, why don't I just eat whatever I want?? But then, I'm reminded of past bowel obstructions, and I know I'm doing better than I would be if I were eating dairy, salads, and red meat. IBS symptoms can be caused by EDS. Malabsorption and motility issues are common with EDS or dysautonomia. But my motility seems to be okay if I avoid the worst dietary offenders.
I have a lot of other symptoms to manage on a daily basis. But these are the biggest ones right now. I'm also just trying to cope emotionally with my body's limitations. Many days are really so miserable that I just have to cope with my physical state. I often have widespread pain, nausea, shortness of breath, and a really intense feeling like having the flu (hard to describe). During these times, I just can't get comfortable, so I curl up in bed, put on some Netflix, and just wait for it to ease up. I missed out on my hubby's 30th birthday festivities due to this sickness. I hate it. I hate how much I have to miss out on. I miss my puppy. I miss my independence. I miss earning my own money. I just hate it. I hate being so self-involved due to this illness, and I wish I could be a better spouse, family member, and friend. I think we all thought I would be doing better by now.
The good news: many days, the sickness eases up in the evening, and I am able to enjoy myself a bit. I exercise every night, recumbent bike-riding and light toning exercises. I think it helps my POTS, but I still get out of breath just walking to the bathroom most mornings. I do believe that I have a successful bony fusion. I don't feel like I need to wear my collar, and I never need traction. My neck still gets tired and my muscles seize up with tension every day. I haven't had my post-op scans yet. Communication with TCI has been pretty bad. But I will find a way to get them done this calendar year. Like I said, I do believe that I am finally fully fused this time. My range of motion is actually reduced this time! I still use my bone stimulator every day, just to be sure.
Clearly, the fusion doesn't resolve everything. But I still expect that recovery from the trauma of surgery and the anesthesia will continue up to two years after surgery. I know that sounds crazy, but my body really does take a long time to recover.
The question that often comes up: what do you do all day? I have a lot of trouble answering this one. Basically, I just survive, and hope for better. I keep working toward a better life, even if it seems like I'm not getting anywhere.
I will be happy when I can live closer to my family. My life will be more meaningful if I can spend more time with my loved ones, the ones that support me through all of these years of illness. I am so very lucky to have these people, along with my amazingly supportive husband, in my life. In the meantime, I'll be here...just trying to do what's best for my body, and maintaining the hope that it may still get better.
I'm having a lot of migraines. Almost half of my days are migraine days right now. I've already flunked out of a headache clinic (we tried every treatment available), so I have only Maxalt (a triptan) to treat my migraines. The Maxalt generally does help. I certainly can't skip the Maxalt too often, because the migraine blows up and becomes unmanageable if I don't take the Maxalt as early as possible. Unfortunately, it makes me feel very drugged. It also makes me incredibly itchy (possibly a mast cell reaction). So, I have to take 2 Benadryl to be able to tolerate the Maxalt. So, migraine days are generally lost days. Additionally, if I have more than three migraine days in a row, I just have to tough it out to avoid rebound migraines from the Maxalt use. (Today is a day three migraine, so I'm really hoping for a break tomorrow!)
Another issue that's been challenging is my allergy (suspected mast cell) issues. The main symptoms are itching and swelling. But sometimes, the itching is so bad that it keeps me from sleeping at night, and the lack of restorative sleep triggers my dysautonomia severely. I'm also reacting more strongly to all of my allergic triggers. Unfortunately, this seems to include my sweet puppy, Charlie. Plenty of other symptoms could be related to a mast cell activation disease, but for now, I'm just calling these allergies. Benadryl is becoming my best friend. I'm trying to avoid foods that are naturally high in histamine to lower my overall histamine load, but I can't tell if it's helping. (This includes fermented foods, strawberries, leftover meats, and a bunch of other foods.)
Challenge #3: My digestive tract is a mess. My main symptom is severe bloating and pain. My chronic constipation is improved, and I'm no longer dependent on Miralax. But the bloating and associated pain are still so severe. I've already tried things like fiber supplements, digestive enzymes, and probiotics, but they don't seem to do anything. So, I started a food and symptom diary to try to figure out what is making me sick. Unfortunately, it seems to be a lot of foods. So far, rice, almond milk, potatoes, and chicken seem to be my safest foods. I initially tried a diet I've tried in the past, the Eating for IBS diet, which involves eliminating foods that are high in insoluble fiber, egg yolks, dairy, red meat, and fatty foods. This hasn't been enough. Next, I have eliminated foods that are high in FODMAPs. If you don't know about FODMAPs, there is lots of information out there. It is a scientifically proven approach to treating IBS. FODMAPs include foods like: apples, onion, garlic, honey, agave, wheat, dairy, legumes, pears, cruciferous vegetables, artificial sweeteners, sugar alcohols, and a lot of other foods. They are foods that contain high levels of short-chain carbohydrates, like lactose, fructose, fructans, galactans, and polyols. I had a lot of hope for this diet, and gave it a really solid try. Unfortunately for me, FODMAPs elimination has not been enough to eliminate my symptoms. I really cannot tolerate any fruits or vegetables right now. The pain is too severe. I can sometimes handle half a banana or some cooked spinach (ew!). My diet is one of constant experimentation. I don't do well with smoothies, which is really disappointing. But I'm considering trying juicing. It isn't as healthy as smoothies, but all of the hard-to-digest fiber is removed from the food, and you still get the other vitamins and nutrients. I have no idea if this will work. Some days, it really doesn't matter what I eat. Even when I eat my safest diet, I can still have symptoms. I wish I could just stop eating. On the other hand, it's hard not to think: if even this bland, boring, generally not-too-healthy food is making me sick, why don't I just eat whatever I want?? But then, I'm reminded of past bowel obstructions, and I know I'm doing better than I would be if I were eating dairy, salads, and red meat. IBS symptoms can be caused by EDS. Malabsorption and motility issues are common with EDS or dysautonomia. But my motility seems to be okay if I avoid the worst dietary offenders.
I have a lot of other symptoms to manage on a daily basis. But these are the biggest ones right now. I'm also just trying to cope emotionally with my body's limitations. Many days are really so miserable that I just have to cope with my physical state. I often have widespread pain, nausea, shortness of breath, and a really intense feeling like having the flu (hard to describe). During these times, I just can't get comfortable, so I curl up in bed, put on some Netflix, and just wait for it to ease up. I missed out on my hubby's 30th birthday festivities due to this sickness. I hate it. I hate how much I have to miss out on. I miss my puppy. I miss my independence. I miss earning my own money. I just hate it. I hate being so self-involved due to this illness, and I wish I could be a better spouse, family member, and friend. I think we all thought I would be doing better by now.
The good news: many days, the sickness eases up in the evening, and I am able to enjoy myself a bit. I exercise every night, recumbent bike-riding and light toning exercises. I think it helps my POTS, but I still get out of breath just walking to the bathroom most mornings. I do believe that I have a successful bony fusion. I don't feel like I need to wear my collar, and I never need traction. My neck still gets tired and my muscles seize up with tension every day. I haven't had my post-op scans yet. Communication with TCI has been pretty bad. But I will find a way to get them done this calendar year. Like I said, I do believe that I am finally fully fused this time. My range of motion is actually reduced this time! I still use my bone stimulator every day, just to be sure.
Clearly, the fusion doesn't resolve everything. But I still expect that recovery from the trauma of surgery and the anesthesia will continue up to two years after surgery. I know that sounds crazy, but my body really does take a long time to recover.
The question that often comes up: what do you do all day? I have a lot of trouble answering this one. Basically, I just survive, and hope for better. I keep working toward a better life, even if it seems like I'm not getting anywhere.
I will be happy when I can live closer to my family. My life will be more meaningful if I can spend more time with my loved ones, the ones that support me through all of these years of illness. I am so very lucky to have these people, along with my amazingly supportive husband, in my life. In the meantime, I'll be here...just trying to do what's best for my body, and maintaining the hope that it may still get better.
Tuesday, August 20, 2013
Feeling Hopeless
I've had a few really great days over the summer. They make me hopeful that the future could be brighter.
But right now, I feel completely hopeless. I have been having frequent spells of low blood pressure that do not get better when I lie down. My go-to medication for hypotension is Midodrine. The last couple times, Midodrine actually made me worse. It caused my heart rate to drop dangerously low, in addition to low blood pressure, which causes chest pains. Now, I have nothing to go to when my blood pressure drops. The spells usually come on after exercise or some type of activity. They're usually later in the day, which is unusual for my POTS. They aren't necessarily POTS-related. I have lost consciousness quite a few times in the last week. And it's not like you lose consciousness and then wake up dazed and confused a few seconds later. These are prolonged episodes of unconciousness or near-unconsciousness.
If my sleep is not restful enough or my body is fighting any kind of infection, I can be in a stupor the entire day.
For this kind of low blood pressure, Florinef is commonly prescribed. Unfortunately, it raises intracranial pressure and causes me massive headaches.
The only thing that can help me is Thermotabs and fluids. All day, every day, I chug water. For every 10 ounces of water, I take another Thermotab (buffered salt tablet). This is about 12 a day right now. Yes, I drink at least 120 ounces of water a day. And over 2000 mg of sodium from pills. It is all I have right now.
I contacted a nurse at Dr. Grubb's office. She basically told me to not worry about it. She reminded me that I have a chronic condition (Thanks!). She said that IV fluids are not a good long term solution, especially in someone with EDS, cause your veins will all get blown. She said to only go to the ER if I fall and hurt myself. I don't, it comes on gradually. So, we just have to accept the spells of unconsciousness.
I cannot take anything else for my depression/anxiety, because I have had serotonin syndrome. That's a dangerous, potentially fatal condition, so you really can't mess with it.
I am supposed to be raising a puppy and starting to teach piano lessons again. I don't know when I'll be able to do that, because my condition is so unpredictable. I don't want to turn away potential students that are inquiring about lessons, but I don't know what else to do. We clearly need the money, but I cannot commit to anything in my current state.
I know that the overall lesson here is patience. I know that my condition has highs and lows, and 5 months out of surgery, it should still be mostly lows for someone like me. I just don't see the light at the end of the tunnel right now. I have no idea how much better I will get, or how long it will take to get better. This could be it. I want to participate in my life, not just endure it. And I want to be a better wife, family member, and friend. I just have nothing to give right now. The only thing I know that could help me get to that better state of health is exercise, but exercise makes me pass out. I just can't stand being stuck like this. I can't stand feeling so sick and with such a low level of functioning and a low level of consciousness.
It's really hard when your husband has to check and see if you're still breathing, because you look dead and are completely non-responsive. And it's hard that no one can help me. When I'm barely conscious, there's just nothing to do anymore.
These low blood pressure spells could potentially be a mast cell activation reaction, but I'm seriously getting nowhere with that diagnosis.
I still don't have a local doctor due to an insurance problem. Not like some random PCP would have any idea what to do with me. There is no help. Just deal with it.
Sorry for writing when I'm so upset. I know I'll get past this feeling. I just needed to reach out a bit. I know someone reading will relate to these feelings...and others will probably think I'm just a depressed nutcase that should get some therapy. But in reality, these are just the ups and downs of living with chronic health problems.
But right now, I feel completely hopeless. I have been having frequent spells of low blood pressure that do not get better when I lie down. My go-to medication for hypotension is Midodrine. The last couple times, Midodrine actually made me worse. It caused my heart rate to drop dangerously low, in addition to low blood pressure, which causes chest pains. Now, I have nothing to go to when my blood pressure drops. The spells usually come on after exercise or some type of activity. They're usually later in the day, which is unusual for my POTS. They aren't necessarily POTS-related. I have lost consciousness quite a few times in the last week. And it's not like you lose consciousness and then wake up dazed and confused a few seconds later. These are prolonged episodes of unconciousness or near-unconsciousness.
If my sleep is not restful enough or my body is fighting any kind of infection, I can be in a stupor the entire day.
For this kind of low blood pressure, Florinef is commonly prescribed. Unfortunately, it raises intracranial pressure and causes me massive headaches.
The only thing that can help me is Thermotabs and fluids. All day, every day, I chug water. For every 10 ounces of water, I take another Thermotab (buffered salt tablet). This is about 12 a day right now. Yes, I drink at least 120 ounces of water a day. And over 2000 mg of sodium from pills. It is all I have right now.
I contacted a nurse at Dr. Grubb's office. She basically told me to not worry about it. She reminded me that I have a chronic condition (Thanks!). She said that IV fluids are not a good long term solution, especially in someone with EDS, cause your veins will all get blown. She said to only go to the ER if I fall and hurt myself. I don't, it comes on gradually. So, we just have to accept the spells of unconsciousness.
I cannot take anything else for my depression/anxiety, because I have had serotonin syndrome. That's a dangerous, potentially fatal condition, so you really can't mess with it.
I am supposed to be raising a puppy and starting to teach piano lessons again. I don't know when I'll be able to do that, because my condition is so unpredictable. I don't want to turn away potential students that are inquiring about lessons, but I don't know what else to do. We clearly need the money, but I cannot commit to anything in my current state.
I know that the overall lesson here is patience. I know that my condition has highs and lows, and 5 months out of surgery, it should still be mostly lows for someone like me. I just don't see the light at the end of the tunnel right now. I have no idea how much better I will get, or how long it will take to get better. This could be it. I want to participate in my life, not just endure it. And I want to be a better wife, family member, and friend. I just have nothing to give right now. The only thing I know that could help me get to that better state of health is exercise, but exercise makes me pass out. I just can't stand being stuck like this. I can't stand feeling so sick and with such a low level of functioning and a low level of consciousness.
It's really hard when your husband has to check and see if you're still breathing, because you look dead and are completely non-responsive. And it's hard that no one can help me. When I'm barely conscious, there's just nothing to do anymore.
These low blood pressure spells could potentially be a mast cell activation reaction, but I'm seriously getting nowhere with that diagnosis.
I still don't have a local doctor due to an insurance problem. Not like some random PCP would have any idea what to do with me. There is no help. Just deal with it.
Sorry for writing when I'm so upset. I know I'll get past this feeling. I just needed to reach out a bit. I know someone reading will relate to these feelings...and others will probably think I'm just a depressed nutcase that should get some therapy. But in reality, these are just the ups and downs of living with chronic health problems.
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