Jump to content


  • Posts

  • Joined

  • Last visited

Everything posted by EarthMother

  1. No way! He actually said that and went on to blame rising healthcare costs on unnecessary testing prompted by educated patients!! {gentle hugs} How you sat there without crying in shear frustration is beyond me. I am not surprised he omitted all the pharmaceutical ads on TV that insist we go to our Doctor and get a presciption! Because these are no doubt the "easy" patients in his opinion, that he can medicate and send home. You deserve better. Please know that. You may have to settle while you are searching for your dream team ... but don't give up the vision that it DOES exist. As you know, my Doctor listens to my opinions, reviews new material I may bring in right there with me (i highlight to make it quick) and has actually phoned researchers before on my behalf. When I had that wicked weird rash last summer ... I had googled it up and down and pretty much knew it was pityriasis roscea before I saw my PCP. I didn't say anything to him though because I really just wanted an "unbiased" read of my blotches. When he said "pityriasis", I smiled in relief. As he started explaining it to me ... I added what tidbits I had learned on the net. My husband remarked "She already googled it." And the Doctor tells both of us, "That's good. There is a lot of good information on the internet." Each of us deserve a Doctor who can say the words ... And if you find yourself sitting in an office with a luddite ... have deep compassion for them, they are obviously lost in their own egoic fears. Forgive them, they know not what they do. And keep the vision that your next Doctor will welcome your brilliance, see your case file as a challenge they want to take on, champion your medical options and help you blaze the healing path as an advocate as well as expert you can trust. Holding the vision ... because I know it gets heavy to carry sometimes. ~EM
  2. Even WITH people to drive and help me I still miss soo many appointments because I can not depend on my body on any particular day. So sorry about no cab service. Is there a senior center near by that knows about other transport options. Any friends you can coordinate with? Perhaps a college student who wouldn't mind a few extra bucks? Try to make things as easy as possible for yourself, and setting up some help for the drive in advance. Good luck.
  3. Traditional massage was hard on my system ... though when I was able to work I regularly saw a massage therapist who did a light "powder massage" usually reserved for the terminally ill -- so she explained. I also use to see a reflexologist -- ear, hands and feet. That I could handle! And I loved it. I also tried accupuncture over the years and while it totally cured a prolonged case of vulvadynia (literally gone completely after one session after suffering for 9 months and trying everything the GYNO world could offer by way of traditional treatments) ... I was unable with continued treatments to see any improvements in the POTS. My own sense is ... each of these modalities are different and work differently on different people and perhaps even differently on the SAME person from one year to another... or from one practitioner to another. Good luck finding something that helps you.
  4. It can be really hard to speak up for ourselves in the moment, especially when our legs are dangling off the edge of an exam table like a child who's feet don't yet reach the floor. Perhaps we should each REHERSE a list of possible scenarios (afterall the Doctors seem to use the same old worn out lines -- why shouldn't we have a few scripts at our disposal.) Words like ... "I am sorry, I don't think I heard you correctly can you please repeat that again." And follow up "What tests are you basing this finding on, I'd like to understand how it is you came to that conclusion." Or ... "Are you stating your professional opinion based on objective findings in my medical file, or are you asserting your personal theory of how this may appear to manifest in other people without my particular medical history." Bottom line it should be some version of .... "Wait a minute, I think I just heard you draw causation from data that does not even appear to be corelative in my case. Before we go any further and address my case management in more detail, I need to know if you truly believe that statement about anxiety being a root cause of my symptoms. Because I need to be clear with you up front, that I can not work with any specialist who has pre-conceived judgements about my condition that could result in jeopardizing the quality of care that is required in both the diagnostic and management of a life limiting illness." Shall we all get our note cards ready so we are never again caught like a deer in the headlights of an MD Truck?
  5. I have been on synthetic thyroid meds for more 2 decades and I use to wonder about the effects of the hormone on my POTS. But over the years and over many variations of dosing, I am inclined to believe in my case there has not been a correlation with my POTS symptoms. I have Hashimoto Thyroiditis (auto-immune Thyroid disease) and was diagnosised by chance in my early 20's -- WAY BEFORE I ever had any hypothyroid issues. I started taking small doses of synthroid in an effort to reduce my own body's auto-immune reaction. The theory being, if I ask my body to produce LESS on its own -- because I am supplementing with a pill -- then the auto-immune anti-bodies that are attacking my thyroid gland should subside. It's not an exact science, as my thyroid gland still misbehaves and my Doctor and I are left to chase after it with varrying doses of Levoxyl. For me then, I may be on .1 mg one spring and down to .088 mg by fall. My meds are adjusted both UP and DOWN based on a combination of how I am feeling and my blood work. Note, it takes 4-6 weeks to adapt to a new thyroid dose ... so the "how I feel" criteria has to be assessed over time, not day to day. Because of the Hashimoto, I still get periods of tachy outbursts that are related to high levels of thyroid antibodies -- and presumed surges in my own hormone level production. I say presumed because you may not always catch the hyper thyroid toxicity on a typical blood test and in some cases the surges are transcient. The way that I decipher if it is my POTS acting up or the HASHIMOTO is to note how I am feeling supine. If my body can settle well when I am off my feet, then my POTS is just being POTS ... but if I am agitated and racing even without any activity, I am likely having some Hashi-**** to contend with. One of the questions to ask your endo is WHY are your TSH values high? WHY do you have hypothyroid? Thyroid glands shouldn't wear out -- and many people with hypothyroid at 40+ actually had Hashimoto waging war on their body for years prior without knowing it. Since most endo's regard Hashi as a case of "simple hypothyroid" they tend to discount the surges of hyper-activity that come along with this auto-immune disorder. So we are left then with "unexplained" symptoms that change back and forth and little to do as we wait for our body to settle again. When my Hashi DOES act up my TSH could be normal or slightly high. And I will be feeling all of the rushes of hyperthyroid dispite the blood work indications otherwise. (I am fortunate my Doctor checks some of the T3, T4, free T4 etc. so we can glimpse at the inside picture.) Even with hormones raging the answer for me might be to INCREASE my dose a smidge (in attempt to get my body to stop it's own production). Long winded answer to your question, sorry. But sometimes for some of us the issue can be a bit tricky to pin down. Good luck finding answers and solutions that work for you.
  6. By the time I use to feel the adrenaline surges from my reactive hypoglycemia my blood sugar was already on the way up. It was only by taking my blood sugar at random times during the day that I was able to see it often dropped down in the 60's. Are you following a hypoglycemic diet? (frequent small meals every 2-3 hours?) It took me about 6 months of strict diet changes and adherence before my blood sugar stablized from the wicked lows and spikes I was getting last year. Good luck finding answers that work for your body.
  7. Are you SURE he said childhood trauma? Perhaps it was a Freudian slip as it is more likely a case of cardiologist trauma given what seems to be a more common thread in our discussions. Did you get a copy of the results from his testing? It would be nice to keep those along with any notes and recommendations in your own medical file at home. No advice to offer ... these are tough calls, pitty you could not have shared your concern about the particular med with him at the time. Perhaps he will accept a follow up by phone to vet the issue a bit and indeed to offer an alternative within the same "cure all" protocol that he uses. Clearly if he treats this successfully then he has no doubt ran into people with adverse medication reactions. I wonder do Doctor's ever have patient references? People who have been cured by their treatment and are willing to talk with prospective new clients about the care and follow up they received. I realize HEPA and all ... but it would be nice to have contact with people who have been cured. Good luck sweetie, no easy answers.
  8. I think one of us on the boards has posted about some metabolic testing (new) that can be done to see if we are processing various drugs in our system. In some cases, were medication sensitivity was observed, it was because we simply can't metabolize that particular med at this time. So for instance, whereas the normal half life for a particular drug might be 7 hours, our response may be like 7 days. My own sense is then, that what we can do for medication sensitivity may be related to our ability to process a particular drug. And I am also going to guess that our bodies ability to metabolize particular chemicals may be different over time. I think there are studies about how during stress (they looked at Isralie solders) our blood brain barrier is more permeable. If this is the case, then it may be that our body during a hyperadrenergic phase of POTS is also processing other chemicals in a way that is different than when we are not experiencing an acute episode. Obviously, I have no idea ... all just speculation. My own inclination is to try TINY pediatric doses of any new med (or even older meds that I am trying again) and see how my body responds on them. Sometimes I may only need the tiny doses, other times I can increase the dose when it seems my body has given it the green flag. Good luck finding information that works for you.
  9. The reality of your situation brings to light the thin ice that each of us tread upon, though wish it wasn't true. If not divorce, betrayal or other broken promises then illness, death or unforeseen circumstances bring us to a place where we never imagined we would stand. My heart goes out to you. As I hold you in the light of my meditation this morning, I wish for you strength and courage that you may never have known before existed within your being. And with this breath that we share in this moment and within your faith may you feel deeply loved.
  10. Well this was a new one on me! :-) Every once in awhile when I seem to be awake for a little bit in the wee hours of the morning before my second long period of sleep ... I read a little igoogle news, take a peak at my email or glance at DINET on my hand held palm device to see what's new. I read the ear lobe crease (ELC) discussion last night during one of my brief pre-dawn browse. I went to sleep wondering if my husband had the ELC and when I woke up this morning with the sunlight pouring into our room, my first waking thought was to turn my head and peak at my husband's ears! So funny. Then of course I had to go and get a mirror and loo at MY OWN ELC!! Cout my in the Frank's Sign group! My diagonal line looks just like the pictures on the web. Isn't that just like me to be so textbook. ;-) As all of you other google-researchers have seen there's a ton of published research studies over the last 20 years on a possible correlation. No consensus. Some seem to indicate it is ... while other equally well desiged studies that controlled for a series of variables claim there is no connection. Better to be safe than sorry I suppose. Something to mention to our Doctors and let them determine if any additional testing is warranted.
  11. {{{{gentle hugs}}}}} I am so sorry to hear the news. We never know what tomorrow brings, I am holding you in my thoughts that tomorrow brings better news and brighter days. Please know ... you are deserving. Big breath in ... You are .... (slow breath out) DESERVING. Breathing with you. ~EM
  12. My body seems to establish "set points" and it is VERY difficult for me to change them. At times I drop weight without altering my diet and at other times, I put on pounds weekly with no change in the calories I consume. I also have hashimoto thyroid ... which is likely behind my struggles with both end of the weight continuim. If you get your TSH tested at the Doctor's office, you might want to ask about getting tested for thyroid antibodies too. You mentioned protien sources ... I am a vegetarian and always mindful of my protien intake. Lentils, eggs, cheese, tofu and a variety of homemade nutbutters (almonds, hazelnut, brazil nut) help me balance my whole grain carbs which I also vary to include amaranth, whole grain spelt, barley, brown rice, etc. I am currently in one of my "curb my weight gain" modes since I am starting to creep higher and higher without my approval ;-) So I am becoming creative in my cooking once again. I recently began developing a line of recipes for dessert cakes using canned beans. My most recent creation is a banana cake with tofu frosting that boasts really high protien, good fiber and very low sugar. I'm posting my new indulgences on the web at this site: http://30dayvegetarian.com/forum/ Careful to read the ingredients -- some like the chocolate cake are low sugar but NOT low fat. While others like the banana dream is so balanced you could eat it for breakfast! ;-) I'm not a dietician, so ofcourse check with your Doctor on what diet plan works for you. I just really enjoy food and creating new ways to feel good about eating with dietary restrictions. Good luck finding good eats that help you feel good!
  13. I'd have to wonder why your LTD is asking for a signature now. Could be they lost a case recently. Perhaps their original contract was poorly worded and they are trying to tie up loose ends. If you already have an attorney for your SSDI, the LTD letter and copy of original LTD plan might be worth a review. Getting a copy of the original LTD plan is a good idea for all of us. And not that little summary you get in your employee packet -- but the actual agreement of coverage between the LTD and your employer. When I was awarded SSDI this past winter, my husband called my former employer's benifts department and asked that a copy of the policy (from 2007 when I left my job due to illness -- since 2007, my previous employer had change insurance carriers so it was important we got a copy of the one that applied to my case.) My husband was able to go through the document and get a better understanding about the SSDI vs LTD payment -- as well as definitions some other definitions regarding illness criteria. And in my case for the policy under my LTD, they not only take all of the back pay and my SSDI going forward, but also the SSDI checks that come to my 2 children still under 18. Sounds odd. But LTD is suppose to support you at a certain level of your previous salary (and continue to pay your company retirement benefits in some cases). So as long as you continue to qualify under the criteria of their LTD plan that bottom line percentage doesn't change. Which is fine for most of us because it does represent more than SSDI. What we do get with SSDI is eligibility for medicare (2 years after the onset of our illness) and that is a real boon. Good luck finding out more about why you are being asked to sign a new agreement.
  14. {{{{hugs}}}}} My own sense is that there isn't a right or wrong answer here. It may not really be about the housework, since as you said his veto on you taking a leave of absence from work at this time seems to be an issue as well. Unless the two of you come up with a set of criteria that work for both of you, you may be spinning your wheels. Only YOU can decide what you can do and what you feel good about doing. And then only HE can decide what it is that he can accept. If either of you bend further than what your mind/heart tells you is your bottom line, then resentments are likely to build over time. Some of us felt that we stayed at our jobs longer than we should have. When our bodies were telling us to slow down we pushed on and perhaps contributed to a longer recover period. On the other hand, I have heard from many people that pushing on is what keeps them going. So there is no clear cut one size fits all answer. However, I would urge you strongly to look at your own financial options. Does your company have short term disability leave? Long term disability options? Do you have long term disability insurance through your employer? Talk to your Doctor and find out what she/he thinks about your ability to work. Ask her/him also about what kind of daily physical activity would be appropriate for your condition at present? It might even be a good idea to have your partner attend the Doctor's appointment with you. Its not therapy. But it may help bridge a gap in the understanding of the issue. Good luck and good thoughts your way.
  15. I am so sorry to hear the news. You and your son are in my prayers.
  16. Sorry sweetie, I feel for you. I can sense you are trying so hard to protect yourself from 'overdoing it' and at the same time defending yourself for the choices you are making. At some level all of our conversations have so much cellular memories and bio-chemical triggers. And this may be something that just pushes both your buttons. When I had to stop working and my husband left his career to help take care of me a lot of things changed. We were fortunate in our two-income home to have been able to afford assistance in cleaning the house. My floors were mopped 2-3 times a week, our bathrooms spotless and the kitchen always neat and tidy. I simply can't take on even a quarter of the load it would take to keep the house up to that level of 'clean'. So bottom line for us ... it isn't. Sometimes dishes stay in the sink, until someone puts them in the dishwasher. Clothes may stay folded in a clothes bin for days before they are hung. And dust bunnies? Let's just say I had no idea what it takes to keep these at bay when I worked and realize now that until I can do more ... the house will have to manage with less. Ofcourse I don't mean cockroach, mold or critters running around ... just that we all had to lower our expectations. In that case ... if you can't do half ... half just doesn't get done. No need to ask your husband to do more than he feels able to handle. That said, here are my tips on what things DO work for me by way of house maintainance: * Get as much of the kitchen clean BEFORE YOU EAT. We can't wash pans and mixing bowls with the post-pranial ick -- so as best you can tidy up before you sit down to eat. * Dust pan and hand broom. I can't stand to sweep or mop, but if I am having a 'good day', I can get on my hands and knees and "sweep" using a dust pan and hand broom. Does it take me longer? Sure. But its something I can do, so I do it when I can. I also "mop" the floor with a hand sponge and a bowl of hot water and vinegar. I can't do a big room all in one day ... but I can do bits and pieces and every little bit does help. * We have very few chemicals in our home. Occasionally I'll use a spray bottle with diluted bleach, but most often its vinegar in various concentrations. Sometimes baking soda. Never together ;-) Goodluck finding creative ways you and your partner can make a clean start!
  17. There are a few old posts on the boards about this. Circadiac cycles for symptoms are common. When I first researched this for myself years back ... I saw that the sick as a dog in the morning and almost normal by nightfall was seen in many illnesses such as chronic fatigue sydrome and people who have seasonal allergies. There are a lot of hormones in our body ... like cortesol ... that are highest on waking and slowly drop off throughout the day. So that even normal amounts of adrenal hormones make us feel ill. Another slant on the hyperadrenergic POTS possiblity. Just guessing ... I ofcourse have no clue.
  18. Interesting to noodle. Though I suspect given our different etiologies that the spectrum of possible answer is also vast. A few years back I bought that bio-feedback 'game' -- Healing Rhythms from the Wild Divine. One of the things it reports to measure is heart rate variability ... and it 'scores' you on achieving a high heart rate coherence. This is a line of research that believes ... the higher your HRV the better shape you are in. And the more in sync your HRV is with a slow paced breathing pattern (the heart breath) ... the better. There's lots of games you can play and fun exercises and also a program to test your heart coherence. In there example how long you can stay in the 'blue' range. So! I dutifully went through each of the excercises -- took me a few weeks -- and mastered all the skills while LYING DOWN. I was a pro at getting in the blue zone -- which meant my heart rate wa going UP when I inhaled and DOWN when I exhaled. My assumption was that I could use these 'skills' and do the whole program again in a standing posture. I thought ... if I could use all the biofeedback in much the same way as I did while sitting (or reclined) that i'd be able to teach my heart a more appropriate response. What I learned was ... no amount of training stopped my pulse from soaring ... AND that I could still easily achieve high HRV and excellent coherence (being in their blue zone) whilst standing. Just like when supine ... my heart goes up when I breath in (way way up if upright) and it drops down when I am breathing out. The delta was easily 20+ points ... which by there resesrch says I'm in excellent shape. So funny. For me, the tachycardia on "exercise" seems to be a lifelong thing regardless of how much aerobic work I was doing ... even when I COULD do aerobic work back in my 20's. I looked fit. I seemed to function fine -- back then. But even my earliest stress test on a treadmill when I was in my late 20's had me 'failing' miserably. So for me, i'm inclined to believe the answer is no --- there isn't anything I can do to condition my heart. But I also still believe there are other benefits to doing the cardiac conditioning work that could help in other ways (hormone balance, immune support, improved sleep). Sometimes we just don't know, eh?
  19. I've read that it can sometimes take a year to rebalance your hormones when you make a change like that. I stopped BCP last October and went through several ups and downs since then ... can't say all if any were due to stopping the pills. I did put on about 10 pounds since that time ... which for me was a very good thing. Good luck riding the waves.
  20. This isn't a new thing for me ... just annoying and fused with fear thoughts despite my best efforts over the years. My heart is fine. Like many here I got the occasional stint of PVCs. Seems to go away for months at a time and then they are a constent tap on the shoulder (with a caddle prod) for weeks on end ... so it seems. This morning, I decided to hang some clothes and spent time with my hands over my head looking for empty clothes hangers. I didn't have my pulse meter on -- whereas normally I would have rested sooner, but I'm guessing I was 140+ whilst upright for the 3-4 minutes I was hunting for the "good hangers" Then I crouched down quickly to sort through the laundry basket that was on the floor of the closet. That's when it feels like a car backfiring in my chest. I know this happens anytime I go from standing to a crouch. I imagine it has something to do with blood volume, or heart rate trying to slow down. But does anyone actually have a "technical" explanation on why this occurs? Or even a SWAG? ;-) I remember my cardios explanation of why we feel the "skipper beats" (his term) and I understand that it is a premature beat followed by the heart filling up more with blood and the extra blood being pushed out .... yada yada yada. That makes sense. But why would the rapid crouch cause the heart to have more premature beats? Thanks for thinking about this with me. ~EM
  21. Yeah! You were able to make the presentation!! Board meetings were always the hardest for me ... because they couldn't be rescheduled if I was having a bad day and so much hinged on a successful 'show'. So I would sit there putting ice cubes in my sandals, holding cups of hot tea and making more trips to the loo that you'd think I was a drug dealer. ;-) Big cheer to you for knocking this one out of the park.
  22. http://www.spinlife.com/Invacare-9000-XT-C...m?productID=115
  23. I actually don't mind the word POTS. In california, I may be able to get government funding for a grow lab with my diagnosis. Medical POTS <> Medical Pot -- not the same thing. LOL I say Dysautonomia. And if I really want to shut down the conversation I throw in more multisylabic words ... I have a dysfuction of the autonomic nervous system. Or if you're in a mood you might try ... Its a relatively rare disorder, but based on the others I've met with POTS it seems to only effect highly intelligent, creative and compassionate people. So I can appreciate that you had not heard of it before. ;-)
  24. When I wear compression ... I wear the thigh highs and a separate wide ab belt that has velcro and is easy to adjust when I sit. Otherwise i'd be in too much abdominal pain from the pressure. I think it is sold as some kind of exercise or back support device. But it helps me when my POTS is in pooling mode -- which isn't all the time it seems. As sometimes the compression helps a lot and other periods it doesn't make a dent in my bp/pulse. So I tend to use them both, only when my blood pressure cuff confirms they are helping as intended.
  25. I get this too and for me it tends to come on as an acute attack of pain. Lasts 20 Minutes to several hours depending on how bad I am flaring. Hot packs or cold packs help a bit. In addition ... lying down with the top of my head just a tiny bit off of the edge of the bed and my arms back over the edge of the bed dangling a bit. For whatever reason it seems to open up that area and better balances my blood flow.
  • Create New...