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Elfie

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Posts posted by Elfie

  1. I haven't been around in awhile. I've been diagnosed for 4 years and have had symptoms related to postural hypotension and tachycardia for 6 years and have gotten to the point where I'm limited but not ruled by my illness with the help of a good cardio and medications+lifestyle changes. I had an opportunity to do something that I was forced to skip due to severe symptoms when I was first diagnosed and decided to take it on, even though it was pretty ambitious for me. On top of that, part of the way through that project I was offered and took a job. I was working a ton of hours, standing a lot, doing physical work, and dealing with a lot of stress and not the best living conditions (only getting to sleep at home 1-2 nights a week, etc). About 3/4 of the way through the project I started having issues with migranes.

    I am no stranger to migranes. I had my first one at age 12, my dad is a sufferer and his mother was one as well. There seems to be a genetic component but there aren't any clear triggers like food . . . hormones . . .etc. like most migrane sufferers have. Actually, spinal misalignment seems to be the clearest trigger, but it isn't always linked to that. I know since developing POTS many of my migranes have begun with blood pressure fluctuations.

    Anyway, about 3/4 of the way through this project I started getting auras and migraines frequently. It seemed like any slightly low BP day would trigger one, and from that point on, raising my bloodpressure wouldn't solve the problem, but only cause worsening of symptoms, but lowering my BP also caused symptoms.

    The project is now over, but I am still working full time and dealing with some work stress. While I am a lot less busy than I was for the couple months of double projects, I'm still dealing with frequent headaches that always seem to be linked to bloodpressure changes and POTS symptoms. My cardio is fab but has suggested I see my GP about them, but I know they are BP related. GP suggests dealing with it through my cardio.

    Can we talk migraines?

    Anyone had this experience? What do you do? My first reaction is to raise my BP slightly, but it isn't erasing symptoms.

  2. I occasionally get those really powerful cramps as well, and it usually is because my electrolytes are out of whack--- I have had the experience of one dropping me. It is really embarrassing, sorry you had that happen!

    I try to keep my workplaces from knowing about conditions as I find it may be detrimental to my career and it has gone ok, since I'm not a frequent fainter or one who crashes unexpectedly (I do that way more at home)-- but it would really **** to have people fussing over you after a faint.

  3. It is hard--- I actually think it is hard to have a POTS diagnosis as well, especially if you haven't had advanced autonomic testing to try and determine what is causing the POTS.

    In my case I was 18 when I came down with POTS. However, I don't have the juvenile onset version that can be related to rapid hormone changes and growth. I was originally told "best guess" that mine was post-viral, although the circumstances around it are suspect.

    Either way, because of that docs I see are always making assumptions about the seriousness of my illness and about the measures and treatments worth trying because they ARE SO SURE THAT I WILL "OUTGROW" IT IN 3-5 YEARS.

    I put up with a lot of sub-par care.

    Unfortunately, this fall will be my 5 year anniversary of my POTS onset, with the exception of a few symptoms that came along with a viral illness the year before. I haven't improved in any meaningful way. I'm an adult now (out of school), and am struggling to find work and make POTS work in the real world. Since POTS I've had only one full-time job, and essentially in the best conditions possible working full-time meant that I work and I exercise and do little else.

    I still get told that things aren't serious, that it is "just POTS." In 2010 I had 20 pounds of fluid in my chest pressing on my lungs because my heart wasn't pumping efficiently. Now after insisting I just had POTS for years my cardio is trying to add NCS and other things to my diagnosis to explain what I've been telling him for years . . . just because my BP and HR in the office are low normal doesn't mean that I'm not fainting or having symptoms of low BP. Now he wants to use a pacemaker.

    I've cried in my cardio's office before, and probably freaked him out (well, he isn't a huge jerk, so he would have handled it but been weirded out). I actually did freak his PA out--- she suggested that all my symptoms would get better if I dealt with my obvious emotional issues with counseling. I'm pretty sure the nurses chewed her out. I think it is hard for docs sometimes because they only see test results and clinical definitions, while nurses have knowledge of what the symptoms mean to your quality of life without getting caught up in "what should be happening"--- which of course never is what is happening with someone with dysautonomia.

    It can be hard because I've sat there and listened to him be very concerned with the quality of life of some of his elderly heart patients and listening to their complaints and then turn around and tell me that my similar complaints aren't worth treating because 1) POTS isn't fatal and 2) I'm young and going to grow out of it.

    When I first became a patient of his I didn't pursue further testing with an autonomic center because of his POTS experience (and the center I was diagnosed at not taking my POTS seriously) and his insistence he could treat me. Now he has pretty much given up, and several years later I'm trying to get into a testing center to learn more about what is actually going on with me so someone can treat me.

    Beyond not having treatment beyond the very basics and it affecting my ability to work and support myself, not knowing for sure (as sure as possible) the reason I have this can be hard. It is something that is going to impact my future career moves and education. I've tried to date at various points, and the older I get the harder it is to answer questions about having kids and whether I will have this for the rest of my life. Also, because of my history of heart failure, it is hard to explain that I have this "non-serious" disease that has been serious for me before.

    They just don't seem to get the URGENCY!

  4. Sounds like there is a lot of support for just doing what you have to do, which is how I normally go about my business.

    I'm not concerned about the ride--- I'm rarely motion sick as an adult-- I feel fairly decent in the car, especially since I can make myself comfortable in the vehicle if I'm not driving. However, stops or no stops I'm still worried about the crash afterwards.

  5. Issie- thanks, I'm trying to make that "should I" decision now.

    Diamond-- motion mate is a homeopathic remedy for motion sickness. I'm sure Issie will be back to tell you more. I'm really unsure about this trip, as I too think it would be easier to meet his family when they come visit, but he'd still like to take me. I'm afraid that I'll make a bad impression or divert plans. Mainly I'm concerned because it seems like a very busy time for the family. Also, I'm not sure exactly if there will be a quiet place to lay down and rest since the guest room sounds like it doubles as a lounge, and with an event they might need the extra room during the day, which would mean I'd have to crash someone's bed! We considered a motel stay but it sounds as if it would be a long drive to get to his mother's house, where most things are happening- which wouldn't help me out much.

  6. Thanks Diamond-- I'm not that worried about the actual traveling since I have done long 5-7 hour trips before (and he will drive, and probably stop often for his own needs every hour or two), but feeling crummy for days afterwards once we arrive. I'm worried about potentially dealing with a migraine the next day, or just dizziness and fatigue from a tiring journey. I dare say meeting his mother and sisters will probably be a bit exciting and stressful, as well.

    On top of that, it has been several years (prior to me beginning treatment) since I've dealt with heat like that. Last time I was somewhere hot I had symptoms similar to altitude sickness, wanting to lay down, being dizzy, sleeping, shortness of breath, nausea, ect--- POTS symptoms, but all at the same time and with exaggerated shortness of breath and fatigue.

    He seems quite keen on me going, but I don't want to ruin his trip.

  7. I haven't traveled for pleasure since my onset. Any traveling has been to medical appointments or to see close family or attend funerals.

    Travel is pretty hard on my system, but obviously when I'm just crashing with family or going to the doc that doesn't matter much.

    However, I've recently been invited on a road trip with the man I've been seeing. He is from Tucson, AZ and is traveling back for a family event and would like me to come with him. I'm flattered that he'd like to introduce me to his family. I also wouldn't mind "getting away" for a week after a long hard winter.

    The issues lie in traveling (about 9-10 hours by car) and dealing with the heat in the 90s in Tucson.

    I don't want to take the focus away from the family event or keep him from enjoying the time with his family because things don't go well and I need to be laying down.

    I'd love some advice!

    If I don't go on this trip, hopefully I will be traveling to the Mayo in MN (18 hr drive) or Dallas, TX (13 hours) for more testing, possibly with the same traveling companion.

  8. When I travel I tend to be both dizzy and sleepy-- however, I relate it more to what I'm doing stressing my system, which lowers my BP a bit and THAT makes me both dizzy and sleepy. Sometimes laying down and relaxing is enough to reduce the stress on my system and I will actually feel better after a nap, despite sleep lowering BP more.

  9. I live in Colorado, also at a higher elevation than Denver. I grew up in CO at 9,200 feet and spent much of my childhood above 10,000ft. I was living out of state at a much lower elevation when I got POTS. I can't comment on the weather since where I was living also had lots of sun. I moved back about two years ago. It did take me about 4-5 months to get used to the altitude again with my POTS, but once I re-adjusted I don't have more symptoms than before. I do still have a harder time going up to visit family that live above 9-10 feet--- I tend to be more fatigued, a bit more dizzy/POTSy, and sleep a lot more.

    If you have Vit D deficiency, CO should be great for you! lol

  10. Firewatcher-- I've experienced similar to what it seems like your describing. I'm still stronger than the average woman, but instead of gradually fatiguing (normal, pre-POTS), my muscles go and then just won't fire to do another rep. I also plateau big time when it comes to lifting weights, ect---- where I gradually increase strength and then randomly it will stop and I just can't do any more--- almost like I have a muscle I've over-worked or fatigued . . . .but even with rest it doesn't recover.

    I also have times (when I'm feeling less potsy, usually) where I can lift significant amounts of weight many many times with no problem. Other days I have issues being able to physically pick up a gallon of milk, both because of symptom triggers and just physically not being able to.

    When I got POTS I lost a significant amount of muscle, despite most of that muscle being "natural" (i.e. just from my life, stuff I normally had on my frame, not from weights, ect). I didn't change what I was doing--- but it is almost like I was chewing up the muscle and it wasn't rebuilding fast enough to keep up with me.

    Similarly, when I have a good POTS day, I can run for long distances and sprint fairly quickly, go hiking above 10,000 feet all without being short of breath, so I know cardiovascular wise I'm in decent shape.

  11. Good to know-- my nuero used to work at Mayo back in the dark ages when they were first solidifying an autonomic lab and coining POTS. She wants me to get further testing, but doesn't have the facilities or staff to do it herself.

    I'm trying to decide between the mayo in rochester and Vernino in TX.

  12. Mine is usually related to a BP drop-- even if not low, my bp usually rises (at least in my brain) when I work out and get blood pumping and the relative drop from slowing down can cause symptoms, and sometimes it just tanks. Also, sometimes I find I'm working out on adrenaline pushing myself, and crash afterwards, even if I'm not working out too hard. I sometimes have to sit in the car or a cool part of the locker room and "chill out" before I'm safe to drive. For me, I've gotten better over time at avoiding pushing too hard, which seems to help.

  13. I took it after I was first diagnosed with POTS (I also have some tremors and migraines- the migraines I get from my dad). I didn't have bad side effects-- a slight appetite suppression, which was ok for me as I don't deal with constant nausea and still got plenty of healthy food and a bit of fatigue and "weirdness" but nothing serious and I would have gotten used to it. It just wasn't effective enough for me to stay on, since I deal pretty well with my migraines using caffeine.

  14. Hey guys,

    Have a referral to either Dr. Vernino in Dallas or the Mayo in Rochester. Because of where I live I'm tempted to go to Dallas.

    I have a local neuro that used to work in the autonomic testing labs at the Mayo back in the early days who has kept up with a lot of what is going on in POTS treatment and she is willing to treat me, but needs a battery of autonomic testing.

    If I went to Dallas, it would be nice because it is close enough I could return if needed.

    However, I'd really like to hear more about forum members' experiences. I'd be really grateful.

    Feel free to PM me instead!

  15. Elfie I would recommend boosting your jogging periods. It wasn't until I got to about 50 minutes of continuous jogging that I noticed my dizziness and lightheadedness go down. TXPOTS mentioned to me that the stair master helped the her a lot and I intend to start that tomorrow.

    I appreciate the advice-- I used to be a runner, but I struggle with it now. I'm in pretty good shape cardiovascular-wise (I recently out-beasted a friend that is a regular runner and has to pass stringent physical fitness tests at work, and I felt good doing it), but if I don't find the perfect pace and keep my heart rate in just the right range for that particular day, my BP tanks and each day is different. Too slow/not doing enough uphills and it'll tank-- too fast or too hot or too long and my BP will tank. Also, I find the logistics difficult because if I've been running or hiking hard, even if I'm feeling good ATM, if I slow or stop in any way I'll often get an instant drop in BP and will faint--- which is dangerous on the trail, the road, or the treadmill. I went hiking with a friend and was behind him coming up a strenuous part of the trail (like climbing up 2ft high stairs-- several flights), he paused as we crested the top and I couldn't get around him to keep going. Before I could even tell him to "Move it" -- I went down. I've had that happen when I tried to get off of a treadmill (it can happen even when you slow gradually or cool down) or when I've had to stop to tie a shoe (even sitting or squatting). If everything isn't perfect, my vision and balance and coordination get wonky and I can't read terrain and feel like I'm running on a boat and will fall or bounce off of things or twist an ankle-- I have ended up with treadmill faceburn before.

    I also struggle with constant hyperventilation when I have low bp-- which means jello muscles because of inefficient breathing, despite trying to control it.

    I know I'm in good shape because on a good day I can lift 100s of 50 l.b. boxes, run a couple miles, ect. I still can't stand or walk slowly or sometimes even sit without symptoms. On other days walking with a 10 pound backpack makes me so short of breath and dizzy, and I've fainted trying to get a gallon of milk out of the fridge.

  16. I hate to be the naysayer, but I'm not sure it works for everyone. Over the course of 2 years I built up from swimming, water exercise, and recumbent biking to vigorous hiking (constant climbing), weightlifting, and some jogging. Even after 7 months of the vigorous activity 3-5 days a week, with decent activity levels on the days off, I still had bad POTS symptoms. Sure, I was more fit, but it didn't impact my dizziness or how I felt or improved my functioning when standing (dizziness, fatigue, chest pain/SOB, and cognitive/balance-type issues are my worst symptoms, all related to low bp). I was still just as bad POTS-wise, unless climbing up the side of a mountain. For me, my symptoms seem to be more impacted by stress than long-term strenuous exercise.

  17. As mentioned in the topic segment, I am probably going bad bad places just for thinking about this. However, I figured that if there ever was a place where people might understand, or at least kindly set me straight, it would be here.

    We've been very lucky in my family and group of friends to have very few people deal with serious health issues. I've had family with orthopedic problems (bad hips, bad backs, old injuries-- not to say that these can't be painful and limiting) but only a handful of people with serious medical problems otherwise. For the most part those that have/had issues were elderly and often the issues were related in some way to lifestyle choices (former smokers with cancer or COPD, overweight family members or family members with poor diets or drinking problems developing type II diabetes-- not that that somehow makes them "deserving" or anything). I have one cousin that had very severe asthma as a child (now he is almost an adult and has no issues) and have had several friends with juvenile diabetes. Most of my relatives and many family friends died in their 70s or 80s rather suddenly of old age/natural causes or in accidents. We don't have family or close friends with non-fatal chronic illness for the most part either. However, my family and friends tend to be very caring with a lot of sympathy and always willing to take care of one another.

    Prior to ever reading studies or statements comparing POTS/dysautonomia patients' quality of life to that of patients with CHF, COPD, and kidney disease patients needing dialysis, I remember visiting family members with COPD, lung cancer, and uncontrolled diabetes/kidney function issues. I listened to their complaints about shortness of breath, dizziness, memory impairment, heat intolerance, cold hands and feet, not being able to stand or walk to do things, fatigue, ect and really feeling like I could relate--- at least better than anyone else in the room, despite being 40 years younger. Of course, I never thought anything of it because "how dare I compare myself-- POTS isn't FATAL."

    Then I went into heart failure. Luckily today my heart seems to be undamaged by the episode and I'm not currently being treated beyond attempts to keep my heart rate down and blood pressure up so my heart isn't working so hard. I can very clearly state that POTS and CHF are a lot alike-- in fact, I didn't even realize symptom-wise that something was going on. It was the sudden weight gain that lead my doc and I to discover that it wasn't just more POTS fun. Of course, one episode definitely increases my chances of CHF developing again (or becoming symptomatic depending how you see it) and having heart damage or dying from it compared to other POTS patients. That said, I'm still being told that I'm lucky and POTS (even my POTS) isn't FATAL.

    After that episode my treatment/improvement with meds and lifestyle changes pretty much plateaued, but I did read up on studies that compared quality of life and symptoms of POTS to other conditions.

    My grandfather suddenly became ill and was hospitalized for a bacterial lung infection. He did not have directives, but became ill enough that his sons (mostly my father) had to make medical decisions for him. He was on a ventilator, but doctors said he had a good chance of recovery. However, his kidneys were damaged by the harsh antibiotics. The week prior he'd been up, hiking around the mountains with his 18-year old grandson. My father called me up to ask me what he should do about grandpa. I was shocked, but did my best to support and advise him. It about floored me when I got a call saying that he and his brothers had taken grandpa of the ventilator because they didn't want his quality of life to suffer . . . having to be on hemodialysis because of reduced kidney function.

    Of course, at the time I was more worried about family members and grieving my grandfather, but looking back it kind of amazes me.

    Shortly after this, a dear close aunt who had been suffering with COPD for some time passed away. All I heard from family and at the funeral was how good it was that she had passed because of her long suffering and poor quality of life. I remember sitting in her hospital room shortly before she passed (they thought things were improving and she would be going home soon) and being to sick to visit and laying down in the corner (yuck!) while she sat up talking with family for hours.

    I've also had family and friends tell me that they would rather kill themselves (and family members that have ignored warning signs and refused treatment for conditions) rather than deal with a reduced quality of life that they've seen loved ones struggle with, even before the patients reached end-stage and were house or bed bound, ect.

    Now I have a friend who is struggling with cystic fibrosis. I'm not extremely close to him, but he is the long-term honey of one of my very best friends and is very close friends with another very close friend. He is a lung transplant survivor who did so well post-transplant that he was able to return to a incredibly active job and runs and hikes/participates in adventure sports on his time off. My understanding is that he went from fairly healthy lung-function wise to being on the transplant list and receiving a transplant fairly quickly by CF and transplant standards. Neither of my friends knew him before the transplant (it was more than 5 years ago), so they mostly know the healthy him. Of course, when he gets sick he can get really ill, and he gets more colds and infections than most because of immuno-suppression. However, I think it is considerably easier for healthy people to understand someone being short of breath, dizzy, and extra tired when they are sick with colds and chest infections which most people have experience with. He has had a few more infections than normal lately and is having a hard time recovering from his last one and there is fear he may be rejecting his transplant. Even though obviously I have no idea what he is facing, we relate symptom-wise each time he gets like this. Of course, we are all incredibly concerned for him, me as much if not more than most (CF was part of the curriculum on genetic illness that I studied in school, so my relationship with this surprisingly fit friend isn't my first/only knowledge source about the disease.I absolutely don't want to see this friend suffer, pass away, or undergo the long transplantation waiting and recovery process again. He is a sweetheart of a man and I often joke that we could just put his nervous system and heart in my body and create a fully-functioning person since we have similar senses of humor and somewhat opposing strengths-- the two of us would make somebody very lucky. LOL ). All my friends are very concerned not only about his long-term prognosis, but how he is feeling.

    I'm really grateful everyday that I don't have something fatal. I'm not trying to compare my life to someone suffering from cancer or on their deathbed.

    I do still feel confused though. My family and friends have made it clear that they don't believe that suffering or living with a reduced quality of life is worth it. Obviously they weren't thinking about me when they said these things, but it is a bit mind-blowing considering how I feel on a day-to-day basis and the studies that compare quality of life. On the other hand, people have made it abundantly clear that their expectations of me don't change-- because POTS is not FATAL. Even when I was being tested for heart failure again because my fatigue, shortness of breath, and hair loss (the unique/worsening symptoms from the last time I went into CHF) I'm still getting phone calls about how tired and stressed out so-and-so is.

    I don't know how to feel about this.

    I'm not saying that I'm not thankful and very lucky that POTS isn't going to kill me.

    However, I am probably going to **** for thinking about this . . .

  18. I live somewhere cold and am painfully cold (similar to the first stages of frostbite and hypothermia) all the time during the winter. My body often doesn't create enough heat for me to trap it and use it to warm up (especially extremities) however, I find putting heat from other sources painful (heating pad, electric blanket, even warm shower). I'm always sticking my "ice hands of death" on close friends and family members who run hot (I give a lot of massages too because I get to borrow body heat and the rubbing does eventually warm my hands up). AC can also leave me shivering, especially after eating and I will end up with cold extremities from that. That said, I don't like heat either. When we go from warm to "hot" I get pretty miserable and feel dizzy and short of breath. Can't keep me happy I guess!

  19. Thank you --- it sounds like he and I need to have another talk. I tried to be very clear to him from the very beginning about what I expected of him and how POTS fuels some of the things I need from him (and therefore they are non-negotiable-- like not being able to drive home late at night safely), but it is possible he misunderstood me. I do feel badly because I do think he is a very nice person, but I do think it is possible that he has never been in a relationship with someone that is quite as even keel as I am and because when bad things have happened between us I haven't been OTO upset or yelled or said hurtful things that it means that things are ok. They aren't and I just took it for granted that as a smart mature adult that he knew it was not ok to treat me in a way he wouldn't want to be treated and that I didn't have to yell at him (I hate to escalate things into stress or fights because of POTS). He has occasionally said things about being afraid I would yell at him or no longer want to see him because of certain things that happened and I have reassured him that I would not do that just because of a situation that he can't control (getting called into work, for example). I'm not sure he understands that that doesn't mean that canceling plans doesn't hurt my feelings or that he still needs to handle the situation respectfully (calling as soon as he knows that the plans are off, letting me know the reason, apologizing and making new plans). Once again, I was hoping that being a smart mature adult meant that I didn't have to "get after" him about things that he clearly has some inkling deep down are not ok.

    I also feel badly because I've gotten in the habit of not confronting issues immediately, but taking some time to think about them because I find that I am more quick to anger if I am having low BP and other symptoms and can sometimes feel extra angry or emotional on midodrene. However, then I sometimes feel bad about having to come back and speak up about something that happened beforehand.

  20. Basically I was very clear about my needs from the very beginning. We've been dating for long enough to be attached to each other and considering the future, but not to the "partner" stage. For the most part the relationship has been on an even keel, with us both doing about half of the "work" of the relationship.

    Recently he hasn't been treating me "badly" persay, but he has become increasingly selfish, unwilling to put out effort, and inconsiderate of my needs. He says he has been very stressed. I've tried to be supportive and been willing to pick up the slack in our relationship (willing to do the driving, bring food or groceries with me, cook and baking for him, giving him massages-- been understanding when plans were canceled or when he'd rather sit on the couch than go do something) if he could give me a little notice on the invite. Unfortunately, he continued to invite me to his house (which is quite a drive for me) at the very last minute, often late in the evening. Of course, it is very difficult for me to drive at the very end of the day, especially when I haven't planned my meds out and my activity out to save spoons to do so. He wasn't great about not making me feel guilty when I've had to turn him down, or when he wanted a massage or for me to take care of him when it was very inconvenient to me. He also got into the habit of promising things or asking me to clear my calendar and then never making plans but leaving me hanging. He also didn't let me know that he was stressed until he'd been treating me like this for several weeks, which further stressed me out.

    I can completely understand being stressed or tired and not having energy to go do something or to plan something. I would have completely understood even if he didn't have the time to see me. However, I feel he was being disrespectful and selfish and I never have treated anyone like this, despite having similar stress and energy issues with POTS. I let him know that he hurt my feelings and stressed me out. He said that it wasn't purposeful and tried to apologize for his work schedule. I told him it wasn't the work schedule, but him not being considerate of my needs too.

    Now his work schedule has changed and he is back to being his normal wonderful self. Of course, I'm still dealing with the additional stress and subsequent POTS flare and not sure how to handle it.

    On one hand, I don't want to be a harpy since we've already discussed this, but I don't want him to think that I will put up with being treated poorly each time he gets stressed.

    On the other hand, I know there will be times that if the relationship continues he is going to have to put up with me not having the energy to put into our relationship and possibly even having to deal with more difficulties because of my health.

    It isn't the lack of energy that bothered me, but the not being able to call me at 2 if he wanted to see me at 7 p.m. and not accepting my offer of bringing dinner, but instead putting me in a situation where I skip dinner, or where I drive an hour to see him only to have him request favors and then ignore me. There is a little niggling voice that keeps telling me that I deal with as much or more stress as he was dealing with regularly and wake up feeling worse than he does on a bad day, but it is somehow ok for him to treat me poorly because he is stressed, but never ok for me to treat anyone poorly or be less than wonderful. This is a constant niggling feeling that I'm experiencing with other people in my life as well. I don't want to take that out on him, since I truly still believe that everyone has the right to feel sick or stressed and they deserve care and sympathy too.

    That said, my body can't handle the stress of someone I don't have to have around disrespecting me and hurting me.

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