EarthMother

Last summer I was all about the ice packs. This go around I seem to be inclined to use a heating pad. Which is strange. But even in a hot flush it feels better. I do have to remind myself, as you said "it's ok. you're going to be ok. your body just has to get this worked out." Because my mind tends to go to scary movie stories. Strange how my Zen goes right out the window when I need it most. Last summer when I began the crash I finally gave in and tried several of the Benzos. I gave them a good trial for probably two months ... but they just seemed to make me feel less able to cope with the same intensity flair. Then after a while the rebound anxiety from the Xanax was simply doing me in. So I decided to taper off. I am tempted to consider an anti-histimine, but me and meds have such a bumpy history. Thanks for the suggestion of the kinesiotape ... I recognized the pictures of it as the tape the olympian volley ball women's team wore. I'll have to look into this. Its not usual for me to have tight muscle or body pains, whatever is going on seems to cause such a wide range of symptoms. But when it passes, other than being exhausted, it does pass. My body doesn't hurt. I don't feel jumpy, my heart's has excellent coherency ... until the next surge. Strange. ~EM

When I am well enough I love to cook. I recently self-published my first cookbook. It took 100 times longer for me to finish it had I not been ill, but I would work on it little by little on days that I felt well enough to sit with my computer. Cooking is so important to me, that I rearranged the way I do things to make it work for this orthostatically challenged body. I have a power strip on the floor and I bring my food processor and cutting board and mixing bowls etc. all down on the tile where I can crouch and cook away! That's one of the reasons why my kids did my first cooking video on youtube for the book .... because watching a woman cook on the floor, just doesn't have much sexapeal. LOL But on days when I can't stand up, I can usually still kneed dough for fresh bread on my hands and knees. Even before the bad POTS crashes started I tended to enjoy very quiet and still hobbies. I could hold a camera in my hand for hours waiting for a hummingbird at my backyard feeder. I still enjoy backyard birding ... even if it is just from my window. I also like to sew. Once again, I have my sewing machine on the floor -- and I crouch on my heels with the peddle under my tush. Too much information huh. I have no talent as a seamstress. But I can take an old sheet and make enviro-friendly cloth napkins for the family to use instead of paper. And we save a few bucks! A while back when I was feeling a bit better, I took lots of my kids' old jeans and made a slip cover for our couch. I quilted some teashirts together for the seat cushions. Simple stuff. Fun to do. And I could do it piece meal a little at a time on days I felt good. Finding ways to do what I love has been important to me ... from the kitchen to the bedroom! Don't worry, I won't go into THOSE details. Giggles. ~EM

My new chair arrived today! Yeah. It is everything I wanted (for the price I could afford! ;-) A rigid chair (even a used one that I could budget) just won't fit in our tiny Prius. So that's out. I am particularly pleased with the 16" seat on this one, as opposed to the 18" seat on my last chair. I had initially opted for the extra room because I thought that would help me fold my legs up. But it makes it decidedly harder on the arms. I really really like the elevating leg rests! They are only 2 and a half pounds -- which is lighter than my last standard pair! For now, I even took off the foot rests and just cuddle up my feet on the elevated shin guards. (They are really sturdy.) I'm in a potshole since last week and haven't been able to do much of anything at all ... but I had a break in the surge this afternoon and took advantage of the opportunity to get outside and push myself around our cul d'sac. It was wonderful. As soon as my leg rests were snapped on my not-so-little dog jumped up in my lap and we were off! Even with her added 15-20 pounds, this new chair is so much lighter and manauvers so much better than the rental I had. And the purple trim is simply awesome! I hope you get everything you want and more!! ~EM

Thanks so much for all the well wishes. This morning's surge lasted from 7:00 a.m. until just after Noon. I am completely wiped out. I also noticed I've lost four pounds since this started, so I'm kicking up the butter'd toast and whole milk! This too shall pass. Yes ... thank you for the reminder. Salubrious. ~EM

I wish I knew what brought on the changes or how we can avoid a crash ... but even when you seem to be doing "everything right" ... things can still turn on a dime. My dime turned early last week -- and I've been thrown into that cycle of surges ever since. Grrrrr. I can't pin point a trigger (ruled out food, stress etc.) But when it hits the coat hanger pain seizes up, there can be intense heat or chills (flip a coin) pressure in the eustacian tubes (ears?) and my heart rate is jumpy(though not necessarily high, just erratic). The surges last anywhere from 2 minutes to two hours. Followed by an almost woozy feeling and fatigue. Then it can be anywhere from a half hour to 6 hours or more then another one hits. Ick. I still had the collection jug for the four hour concentrated urine methyhistimine test .. so I decided to collect that this morning. And I suppose it could be my thyroid is off again, or its just more fun with menapause. Who knows? I'm just wondering for other folks who deal with these flaires ... what helps while you wait out the storm?

The new theory on the "purpose" of dreams seems to be that they are used as tactical training for the brain. In countries all over the world, researchers found that people universally dreampt about common themes, like escape or strategies for survival. I think in POTS people we often incorporate a nocturnal ANS event into our dream plot -- by way of the mind trying to make sense of our Body sensations. (But that's just my theory ;-) Despite my condition I still fall asleep easily at night. The vivid dreams and nightmares are intense and I often wake up in full arousal, or as last night with an audible scream and a jolt upright in bed. But I fall back asleep without muchado. I figure my body is working out whatever it needs to do to heal. Sweet dreams ~EM

Sunfish picked up an interested thread by mae .... I found this to be one of the most interesting observations regarding my own experience with the manual chair these last few months. When I first got the chair, I was able to push myself maybe 10 yards down the sidewalk (mind you, pushing yourself on uneven pavement is much different than in on a flat smooth service like the inside of a store which should be much easier, I'll let you know if it is once I get my nervous system calmed down enough to GO INSIDE of a store ) After those few yards, I was winded and tired so my husband would take over and push. Little by little, I would go a bit further each day, before hubby would take the reigns. I discovered that I LOVED the feeling of "exercise" when I was propelling myself in the chair. I could see that my HR monitor might go up to 105-110, but it felt SOOO DIFFERENT than if it was like that and I was standing. When I am using my arm muscles I feel like I am doing weight training (because I guess I AM!) and even though that can have a bit of a cardio kick, it isn't like walking up the stairs where I feel winded, exhausted, nauseus and sick. It just feels like I am using my muscles. And for me that feels GREAT! The aftermath is much different as well. If I was trying to stand or walk, I feel like crap when it is over. If I push myself in the wheelchair, I feel a bit of muscle fatigue, but my overall body sensations still feel good. I don't have the same "crash" from the sustained pulse rate that I would if I was upright. I can now push myself all the way down the block (maybe five house or so) -- my husband pushes me up the hill after that, and I can take over again once we get to "flat surfaces". Oh, and I do every now and then make it out to a store with my therapist. Last week I was able to tool all over the garden section of our local Target. Not more than 5-10 minutes (because my nervous system just goes on full alert with so much stimulus to enjoy) but I didn't need her to take over at all. It was a blast. ~EM p.s. Oh and I got the DEEP PURPLE Dancing Light. Can't wait until it arrives.

As I've mentioned before ... the landscape of pulse meters (and BP devices) IS going to change in the next few months/years. The little device I wear on my wrist, that I adapted from the Prevention Finger Heart Rate Monitor, uses a beam of light to provide continuios display of HR without a belt. I love it. But really ... think about it ... what real "help" do these provide? Don't get me wrong ... I use mine all the time to help me guage activity. But fact is, I usually KNOW without looking that my pulse is outrageous. The devices can be validating and that's nice to know. But they don't treat the underlying cause or provide a plan for rehab in and of themselves. I'm just saying ... I'm a high-tech geek and I love these gadgets ... but our own body wisdom and insight is probably just as good in terms of 24/7 witnessing presense. ~EM

{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{[yeah for you}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}} Thanks for sharing! You go girl!!! ~EM

Mmmm. I use to put it over plain yogurt with fresh sliced papaya (wonderful for stomach issues). Yeah, I need to get some again.

I made lots of phone calls once I got the script from my doctor. I called the insurance company and asked how the process goes. They put me in touch with the medical group that would handle it. I called the medical group and asked how the approval was coming along. They kept me posted and also put me in touch with the medical supply company. I think all told it was about a month. But I did start over once in the middle of the process, because they approved a "standard chair" and I told them there was no way I'd be able to handle the weight, and I would need a "light weight" chair. So they gave me the code I would need for my doctor and with a few more faxes we were on our way again! Unfortunately I lost my chair yesterday, due to insurance changes. But this time, with new insurance, I am buying my own chair (and charging it against my high dedictable) and I should have the chair by the 20th. Good luck and keep us posted!

I use to take flax regularly, but stopped several months back when I got a couple of rancid bottles. I forgot about it completely it seems. How ironic. I do think it helps ... (EM's making mental note ... buy more flax seed oil!) Thanks for the reminder!!!

{{{{{{{{{{{{{{{{{{{{{{gentle hug}}}}}}}}}}}}}}}}}}}}}}}}} I am so sorry that more light at the end of the tunnel was not forthcoming at your Cleveland meetings. It would be nice to have some leads as to new treatment options. But as you know that is often not the case. We each seem to muddle through, day by day, tweaking this or that along the way. What seems so hard for you right now is all of the additional life changes that is effecting your support network. Under their own stress, some people may become very focused on the crisis at hand and have a hard time remembering the life limiting nature of our illness. I know it must seem like everything is falling apart (on some level) right now ... but keep in mind that sometimes when the dust does settle the new landscape around us is so much closer to the vision we hold in our mind's eye. Keeping a good thought for you. ~EM

My insurance changed this week ... and I lost the manual chair that went along with my HMO. But I just ordered a new chair for myself! http://www.spinlife.com/Invacare-9000-XT-C...m?productID=115 In purple! With elevating leg rests. I'll be able to apply the cost to my new insurance high deductable. I'll let everyone know how it rolls when it arrives in about a week! ~EM

I feel bad that I can?t do more around the house. My husband takes care of everything from laundry to yard work and my contribution if any seems paltry. It was one of those mornings where my system was behaving as best as can be expected and I looked at the load of bed linens to be washed and thought ?I can do that!? What takes a person who is not orthostatic-challenged minutes, becomes an entire morning undertaking for someone with Dysautonomia ? and that?s on a GOOD DAY! Fortunately today was a good day and I could make this token contribution to the homestead. The first step was taking the light load of laundry down the steps and into the laundry room. I had to plan out my every move in order not to exhaust myself coming out of the starting gate. So I divided this first task into two parts. Part one was taking the basket down from the top of the stairs (where it had been dutifully waiting for the last several days) to the bottom of the stairs. Once at its layover, I could crouch on top of a low stool in the morning sunlight near an open window in our living room to rest up for the second leg of the journey. I sipped some cold milk and nibbled on half of a rice cake with soynut butter that my husband had prepared for me the night before. Then I dutifully waited 30 minutes for the high point of the postpranial hypotension to begin to wane. My dogs sat by my side enjoying the light breeze from the screened window. Rested and ready for step two, I picked up the laundry basket and carried it into the laundry room ? all of 25 feet away. Since I was washing only two sheets and one light cotton duvet cover, plus a handful of pillow cases, I didn?t need to stand at the washer long at all to fill the load, press a button and pour a tablespoon of the homemade detergent we use as part of our live green (and have dull clothes) campaign. Then it was back to the stool in the living room, to crouch and meditate as I rested again for what would be the high point of the laundry chore ? hanging the sheets on the line! Thirty minutes more went by and I felt once again that I could meander around a bit, so I took a few deep breaths and headed over to the washing machine. I braced the clothes on my back and leaned forward to balance the weight, still maintaining a crouch as I walked which seemed to help as a countermanauver. Once outside, I placed the basket on a lawn chair and again resumed my crouch atop of yet another bar stool in our backyard. My heart monitor was zipping around 130+ from all the activity. So I rested for a few more minutes as I contemplated my next move. I would have to have a plan in order to get a sheet from the basket and up onto the clothesline, which would involve taking about six steps and lifting my hands above my head. I decided to carefully fold the sheet like an accordion lengthwise and then in half. Taking my origami wet sheet in hand I walked over to the line and in once graceful motion swung the linen up and over the top of the line. All that was needed to do then was take one edge of the sheet and walk it down the line to unfold it into a single layer as I made my way back to crouch atop of the bar stool. Phew! Thirty seconds of well planned and flawless sheet hanging execution. Then the waiting game starts all over again. I realized there was about 3 to 4 minutes of settling that had to happen in between each sheet. Plenty of time to contemplate more efficiencies ? and to write this how-to-humor in my mind. Deep bow of thanks for letting my share my laundry success story for the day!! ~EM

{{{{{{{{{{{{{{{{{{{{gentle hugs}}}}}}}}}}}}}}}}}}}}}} Didn't sound like rambling to me sweetie. But then again, I, like so many here, know this story well. Don't beat yourself up about the ER trip ... its natural to want to try and stop the pain ... it just doesn't work well for us. I do hope you can find a better set of local physicians who can help you coordinate your treatment with Dr. Grubb. That does seem helpful when you can get a local support system. Perhaps your new group meeting this weekend will give you some new leads. That sounds like a very positive step! Congratulations on getting this going. As for the blood sugar ... it took me over six months to get that straightened out ... and mostly on my own. The endo I saw had nothing to say about it and offered no suggestions. But little by little (eating small meals that is!) my body did settle back into a more normal blood sugar balance. Hang in there ... change may be right around the corner. ~EM

Our feelings are not separate from our situation, our conditioning, our environmental influences, our diet, our climate, our family or origin ... you see where I am going? Everything is connected. Sometimes it feels like we have control over an aspect of our lives ... but then we are given this gift of POTS (tone of sarcasm noted) and our lives are completely turned upside down and inside out. Do some people maintain a positive attitude? Sometimes I suppose. But the bulk of the people I have met on my journey go through the full spectrum of emotions -- we laugh, we cry, we give up hope at times and we struggle to find our way back to a place of ease and balance. At times it feels like an uphill crawl ... because IT IS. After years of this chronic illness with its peaks and valleys, it is hard for me to even recollect my remembered self. Which can be a good thing. I no longer yearn for the glory days. But rather, I consider that my future still holds endless possibilities and ultimately I have NO IDEA what will happen next. Which is a good thing as well. The only constant in this life is CHANGE. And you can pretty much bank on it ... your situation WILL CHANGE. Sometimes that's the most positive thing we can hold on to. Salubrious. ~EM

I agree with broken_shell, you'll feel better once your PCP gives you the thumbs up that these ectopic beats are benign. Meanwhile, what I have noticed for myself over the years is a strong correlation with heart rhythm and eating -- i.e. I get more missed beats after a full meal. If I feel my stomach is acting up, I tend to drink 2-3 ounces of Aloevera Papaya Juice, the aloe soothes the stomach and the papaya has an enzyme that helps digestion. When I am going through a rough patch, I'll take a shot glass of this with each meal. There is also a "normal" variation in our heart rhythm that occurs during breathing. Our heart rate increases slightly when we inhale and decreases slightly when we exhale. So feeling "more skipper beats" (as my cardio calls them) on exhale could be perfectly normal as well. When I am in a POTS flare my body has a hard time switching between the parasympathetic and sympathetic branches of the autonomic nervous system -- so going from inhale to exhale tends to have wide fluxuations in my heart rate when I am in a POTS hot spot. For me there are a whole host of other "triggers" for the skipper beats ... including changing position, menstrual cycle as well as strong emotions (fear, anger). I must say though, that since I switched the brand of magnesium supplement (that my cardio recommended) I do get much less of the heart irregularities. I am now taking Slo-Mag timed release magnesium tabs twice a day. Good luck finding some answers and relief from your worry -- as well as your symptoms!

I've had panic disorder for 25 years and yes sometimes it was front and center on my medical chart and that was hard because everyone was missing the POTS for a very long time. Currently my PCP of 10 years knows I have panic disorder and he and I agree that I am best to address those issues with my therapist. Which I do. My PCP focuses soley on the physical issues of Dysautonomia and CFS -- and whatever other virus or bug joins the party. He trusts that I know my body (and my panic disordered brain) and knows that I know when there is a physical issue that is at the root of a symptom. Gosh I am so lucky to have him on my side! And I would suggest if you don't have the right PCP who trusts your insights than keep looking until you find a better match.

I dropped 15-20 pounds in a matter of weeks as I slid into this most recent POTS crash last spring. At 5'5" I was under 110. I tried protein drinks and other processed foods but continued to loose weight. It may be that my body just shifted again on its own, because I am now able to eat well and have put back on 10 pounds. For me what worked well was removing all packaged or proccessed foods. Switching margerine to organic butter and starting the day with six ounces of organic whole milk. Instead of artificial protein powders I used nut butters mixed into my shake. (Or grind your own nuts in the food proccesor until they become a fine meal or powder.) Gluten is NOT a problem for me, but hybridized genetically modified wheat can be. So I use spelt bread or store bought ezeikle (sprouted grains, no flours). Lots of high quality whole grain toast with real butter. Nuts and berries for snacks every 2-3 hours. Tiny portions of whole foods all day long including whole milk mozzerella cheese, lentil soup, homemade hummus as well as small portions of steamed vegetables. Hang in there! I hope everyone finds something that works well for them.

I can only drink decaffinated green tea. Still felt too jittery on "normal" green tea. Even at that my body seems to prefer chamomile. Hope you are feeling better soon!

I'll chime in for the suggestions already made that you should talk with your PCP and consider getting that medical degree (in your copious free time :-) It has been my personal experience that some of these rare, strange, multivariant disorders can look like red herrings if we test during a relatively dry spell. My therapist (also an RN) would tell me that though she believed there was something organic going on to cause my symptoms, that unfortunately I was likely going to have to wait until things progressed before the medical tests would be able to decipher what that was. So in my case, I tend to test when my symptoms are at a peak or have changed in some substantial way. Timing and testing seems worth considering.

Welcome to motherhood. May you enjoy this new and amazing frontier.

I have bad flaires of "coat hanger" pain, as well as less frequent but far more intense facial (trigeminal) pain attacks. Sometimes I think each may be related to "bracing". When POTS symptoms are bad -- I tend to unconsciously brace (hold tight) against the feelings or sensations. A pushing away response that I don't realize I am doing. A couple months ago I was getting terrible "burning mouth syndrome" pains. It can happen to women in perimenapause frequently, but I also read it could be related to tongue bracing. I noticed then, that I DO tend to brace my tongue on the roof of my mouth and my front teeth. Once I became aware ... I was able to consciously relax my tongue, more and more each day. The Burning Mouth seemed to go away. But I realize that could be coincidence.

I can't understand doctors who are opposed to wheelchairs. Its like they believe they are addictive and should be treated as controlled substances! Like most here, mines in the trunk of the car. I don't use it in the house. My therapist who has known me for a half dozen years is also an RN and had discouraged me greatly from getting a chair. I think she really believed if I just walked around more or tried harder that my POTS would improve. A lot of professionals feel this way. Now when she sees what I can do and how I am trying so hard to build up my strength by pushing myself further and further ... she tells me she is sorry that she discouraged me from getting one before. Here's to poppin' wheelies! (just kidding...I have anti-tippers on mine just to keep me in place ;-)