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Merrill

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Posts posted by Merrill

  1. Hi, everyone! I haven't visited the forum in a couple years, but on this Thanksgiving Eve, I thought I'd check in and wish you all the very best. To those of you who knew me when I was first formally diagnosed and for the few years after that (and you know who you are B) ), I want you to know that I remain grateful for all your support, your friendship, and your wisdom. I think about you, I care about you, and I pray that you are finding joy and healing in your lives. Extra big hugs to you.

    As for me -- I am doing well! We adopted a truly awesome baby girl from China 21 months ago (she'll be 3 in March), and I'm loving my life as a stay-at-home mom. I'm still wearing compression hose and taking my beta blockers and doing all that jive ... but I think my afternoon horizontal time when my daughter naps is the best medicine of all! She wears me out--but she's so healthy and strong and brilliant and beautiful, I am grateful for the weariness, because not to have it would mean not to have her.

    Peace and love to you all,

    merrill

  2. MichiganJan, My heart goes out to you and Jeff. Please know that I'll keep you in my thoughts and that I'm sending out good wishes for healing and strength for you both. Hang in there, Jan. There's no question you two are in for some difficult days during treatment, but people's stories of repair and renewal are inspiring; keep the faith...it will happen for you too! Please keep us posted on everything--and lean on us, OK?

    Best wishes,

    merrill

  3. Emily, thank you for your post. I know it was hard to write--that you had to "dig deep," as you said, to find the words to express how challenging these last weeks have been. I'm glad you wrote your post--I didn't know that you've been struggling this way.

    I was reading posts daily when the "conflict" took place--and almost immediately afterwards, my own life took a fairly sudden turn toward upside-down...and I haven't read any posts in a really long time. This is the longest "break" I've taken since joining the Forum fifteen months or so ago. I have no idea what's going on; your post, Emily, caught my eye when I signed on tonight, and I don't know (yet) whether anything precipitated it or whether you're just expressing long-felt sentiments.

    I don't have the time or energy to catch up on everything and everyone, but I hope you all know that I hold you in my heart and think about you every day, even when I'm not reading and responding to posts. You all have changed my life for the better ... your courage and strength in the face of adversity, your humor, your common sense, your wisdom, your advice--I've benefited from all of it (and from all of you who so generously share these things).

    I am confident that whatever growing pains we're going through at the moment are just that ... the commitment that oldies and newbies alike feel for each other and for the Forum will see us through. Indeed, healthy relationships (built on more than just dysautonomia) have been established through this forum, and I truly believe that they will continue to grow and deepen with time. And those of us who disappear for periods of time, I hope, will be welcomed back like long lost cousins who show up at dinnertime and eat up all the cookies meant for dessert. :P

    Love,

    merrill

  4. Julie, I took zithromax just last month for a hideous sinus infection ... I was so sick ... Started out on augmentin, which is a better drug for sinus infections and works to kill more strains ... I was OK with that for a few days and then the runs started and wouldn't stop. So I called the doc and switched to zithromax. (You may recall my thread about taking probiotics with antibiotics... and I did start taking acidophilus along with the zithro and also for my last day on augmentin.)

    I had a five-day zithro pak -- 2 pills the first day then 1 a day for 4 more days. Don't remember the milligrams.

    It works (at least it did for me)--though don't expect miracles immediately. (It continues to work for quite a while after you stop taking the pills.) I actually think I should have taken a second 5-day pack, because I think I still have some remnants. But I'm getting along OK and think my body will just heal the rest of the way with time.

    My guts tolerated zithro WAY better than the augmentin, by the way.

    Best with it,

    merrill

    PS The pots symptoms during this period were worse, but because of the infection and NOT because of the antibiotics. I wouldn't be afraid to take this because of pots ... but that's me and what I know about my body. Everyone's different! but you already know that ... :)

  5. KathyP, check this out: http://dinet.ipbhost.com/index.php?showtop...oling+neck+wrap

    These cooling neck wraps are really easy to wear and they work great--they also come in lots of colors and patterns (slightly more stylish than lumpy ice cubes--which also work-I've done it! Even just a damp bandana around the neck makes a difference.)

    BTW, there have been several conversations on this topic in the last year or so, so you might want to do some surfing to read suggestions from former forum members.

    stay cool,

    m

    :rolleyes:

  6. Sally, this is just a guess, but is it possible that your doctor was making an analogy? That is, for a person with dysautonomia, carrying a stack of papers is like carrying something really heavy for a someone without this condition? That's what I thought of when I read your post ...

    Corina, I LOVE your positive attitude. Your strong spirit will see you through this challenging period and take you to a place of better health. I just know it!

    Peace,

    m

  7. Other posts on the topic of immunizations reminded me that I've got Hepititis A & B shots to get... and soon! Any reason I should be concerned about a reaction to those? (I think it's a set of 3 immunizations over 6 months... but I need to check with the travel clinic at the hospital to confirm.)

    thanks,

    m

  8. Emily, that's SO COOL that you're gonna have these tests done ... Yay! I hope they can provide some answers ... and/or some peace of mind, no matter what the results. This is a good thing. Here's hoping for a strong day with lots of energy points to spare tomorrow ... have a good journey. (Maybe it'll just feel really good to get away from the house for an hour or two ... to get beyond the mailbox!) Keep us posted, OK?

    PS I wouldn't think you need worry about where they should send your blood; I imagine the hospital and/or your pots doc will know how to take care of that detail. But if you do find out the best center for analysis, it certainly can help to see if you can direct your blood there.

    Best to you,

    and peace,

    m :)

  9. Thanks for sharing your whole story, Wendy. It wasn't too long, promise! And it really helps to get a more complete picture of what's going on for you. I've had miscarriages and no sucessful pregnancies, but others have! And they will surely share their suggestions and experiences. (I know some things by listening and reading and learning...)

    You can do this! Jessica/Ethansmom is delivering any week now (you might email or PM her) and I know she had a helluva time with nausea etc during her first trimester plus. Katherine and Amy/Calypso are two others who may be able to help ... actually, tons of women have figured out various accommodations and made it through to deliver healthy babies.

    I do know that beta blockers are considered OK once you're past the first trimester if they are medically indicated and if your health and wellbeing is at stake. A cardiologist with an OB specialty told me this when I was going through in vitro. She also said compression hose (30-40 mmHg) were a must--and it sounds like you're doing that!

    I started on toprol xl a few months ago and have my share of side effects (in addition to a somewhat lower heartrate :) ), but not the headaches you describe. If zebeta worked for you before, it makes sense to talk to your cardiologist and OB about adjusting the dose until you feel better (and if that drug has been approved under the circumstances.) You're gonna want to get your medical team talking to one another!

    Keeping your bowels moving is going to be increasingly important as you get farther along in pregnancy--can you take colace or some similar stool softener? That might be something to talk to your doc about if increasing your fiber is making you otherwise sick. I sometimes feel like I could also pass out during a bowel movement, and it's so scary. I never actually have--but I do get intense shooting pains in my head at such time. Ugh.

    Anyway--thanks for sharing your story. Best to you,

    merrill

  10. Hi, Wendy. Welcome here. Would you tell us a little more about yourself? When you say you've not had an easy time ... can you describe that and give us a better idea about what symptoms you're working to control? Can you say more about why you want to go back on beta blockers?

    You might also tell us what non-pharmaceutical things you've tried ... that way, people (especially those who've gone through pregnancies) can see whether there's anything else you might try that worked for them.

    (Also, I presume you've talked to your ob/gyn and/or your cardiologist about your experiences with the two bb's you've tried ... what else might they recommend? Maybe it's just a dosing issue?)

    Thanks -- best,

    merrill

  11. Hey, sweetie (Corina), guess what? That word belongs to the world, not to me! And we need to spread that word (that vibe, that feeling, that love) far and wide! I would be honored if you were to use it and use it often. (and it would make ME smile if you did... :D )

    PS a colleague just came to my desk with a bag of pure chocolate imported from Amsterdam! She was there on vacation last week and loved it--she said it's so beautiful, the trees, the canals, the flowers ... said you're having nice weather now! Yay!

    Peace,

    merrill

    :lol:

  12. Emily, so sorry you're having a rough time right now! Transitions (of all kinds) are soooo hard! Hang in there--you can do this!

    Your ambien apparently isn't enough to get you to sleep these days ... maybe you could go back and listen to one of thse Naperstak CDs? I find them soothing, and frankly, boring as all get out. Just hearing her voice gets me snoozing. Maybe you'll be comforted in going back to something familiar that you haven't done in a while?

    I don't know if I've mentioned this to you before, but one of the last "fluffy" and thoroughly enjoyable books I've read is Crossing California by Adam Langer. Here's the amazon link so you can read about it.

    http://www.amazon.com/exec/obidos/tg/detai...=books&n=507846

    It really resonated with me because it's set in the neighborhood that my grandparents lived in during my childhood (and that I live in now). Everything takes place between 1979 and 1981--also key years in my youth. (I graduated high school in '79--and the teenage protagonists perfectly reflect my own teenage angst.) I don't know if it's available on tape ... are you up to actual reading these days? I hope so!

    These are my tips for tonight. I hope you get some sleep soon!

    peace,

    m

    PS you'll be proud of me--tonight I walked to our corner ice cream store with my husband; he got a milk shake but I got salty popcorn instead! Yum! (This is after reading everyone's dairy comments on the other string.)

  13. Corina, re: Espanol--je ne le parle pas. :P

    Gena, it doesn't sound like your acidophilus brand contains casein... I thought it so odd that in big letters on my label it says "non-dairy, lactose free" when the ingredients include casein. I'm sure as you say the distinctions are chemical ones... I posted my note b/c of what Emily wrote.

    I have two nieces (one belonging to each of my brothers) who are dangerously allergic to dairy, and would have to be hospitalized if they made the mistake of swallowing one of these little capsules! For my part, I'm OK with it.

    I went through a number of years, starting in my mid twenties, where I could NOT eat dairy ... If I ate pizza or ice cream (my two dairy indulgences), I got SEVERE stomach cramps that lasted quite a long time. Agony. I tried lactaid, but it didn't work. So I stopped eating it for a while. I battled IBS symptoms a lot--I always have and I still do ... but now I know it's related to autonomic dysfunction. And for whatever reason, starting in my mid-thirties, I was able to start eating pizza and ice cream again. Everything changes--and while I too was one of those 5'7" 104 pound women in my twenties, the ice cream and pizza now stick to my waist, thighs, and butt and I'm 44 pounds heavier. Sigh. I still indulge on occasion.

    So what I want to say to all my skinny friends out there who are younger than 35 and trying desperately to gain a pound or two, don't despair. Just WAIT. :D

    Look, I took us off topic too!

    Happy memorial day,

    m

  14. It doesn't bother me, ladies ... no problemo. <_<

    Morgan-- your post was interesting to me, tho a couple days late! I finished the 5-day zithromax, knowing I would continue to improve even after I'd stopped taking the med. But my prescribing doc put it through with one refill in case one round of zithromax doesn't do the trick. What I forgot to ask her, though, was whether I should take 10 days in a row of the drug--starting with the two-pill dose on day 6 and continuing through day 10 ... or whether I should take it for five days, then wait five days, and if I'm not 100%, then refill the prescription and start over.

    I don't even know what day it is anymore in the lifecycle of this bug... but I do know I'm not 100%! Or maybe it's just the rest of life wearing me down. I'm doing OK, though ... and try not to complain too much!

    I'm still trying to remember to take the acidophilis once a day just to see if it helps my gut health generally ...

    Does anyone know anything about the brand I bought, Solgars? The label boasts that it's dairy and lactose free ... yet it does have casein in it. Hmmm... Emily, can you have casein? I'd heard if you have a dairy allergy then casein was an absolute no no.

  15. Hi, Jen. Just thought I'd add a couple thoughts ... I use a chair in the shower when I have to wash my hair. (It's thick and long and takes a while... I feel more secure sitting if I have to have my hands raised over my head for that length of time.) I'm OK standing for a quick shower, though. I use a little kid's chair that's small enough to keep in the bathroom outside the tub. Little kids who come over stand on it to wash hands at the sink or to get up to the toilet if need be. You might think about getting one (if you don't have one already or haven't considered it). Also, as Steph said, many people including me have a harder time in the mornings. I feel as if I don't function well (and my legs feel like they weigh a gazillion pounds) until I have my compression hose on. Are you wearing those?

    Best to you,

    m

  16. EarthMother, how are you feeling today? Hear hear to what Tearose and others have said ... You didn't let anyone down! You were absolutely at your best in a very difficult and scary situation! You done good ...

    My favorite part of your story? That you felt all of us holding your hand when you were most afraid. It's true! We were there with you! Cheering you on and reminding you to breathe! (I have had many instances when I've conjured you up--last night, in fact, when I woke after an hour and my heart was doing flippityflops or some such dance...)

    My doc has said I could take my beta blocker daily or as needed; it's prescribed both ways for folks like us. I take mine daily--12.5 mgs of Toprol XL--and many days I want to up the dose, but if I don't have it with me, I'm out of luck!

    Let us know how you're doing, OK?

    peace,

    merrill

  17. Dizzygirl, it sounds like the thigh highs you have might not be the right size for you (or perhaps the right manufacturer). I got lucky in that the first (thigh high) brand I tried, Mediven, were just right ... and they never ever slip down. But I've tried other brands too and they haven't worked out for the reason you describe. So it's hard, and it's trial and error. There's another post on this topic where people said what their height and weight was--and what brand/size they like. Perhaps someone will fit your profile and can suggest something for you. (Or you can post your info here, on this string.)

    Also, I started out with Mediven knee highs (to the ankle, by the way, would do nothing for you... the blood's not pooling in your feet!), which felt great ... but I figured if those felt good, compression through the thigh would feel even better, and it does! And all the medical literature recommended thigh high or higher, 30-40 mmHg compression.

    Slippage is super annoying ... maybe to the waist would work for you too. (I bought a pair of Juzos; thanks Emily, who thinks I'm a chicken ...I tried putting them on and it was so hard and my foot got a humongous cramp in it (OW!) and I gave up. So they're in the drawer...

    peace,

    m

  18. And this was my own reply to Tsampa's original post:

    That's a great question, tsampa ... it's true that many conversations have focused on how to get through pregnancy, but what about the REALLY tough part: raising a child? Especially during the first few years, when they need us for everything and demand so much energy? I'll be adopting this year--and even though I'm able to work full time now, I'm sitting most of the day. Spending all day with a baby will be a real shock to the system (as it is even for people without pots/dysautonomia). Any tips?

    m

  19. Morgan, I hope you don't mind -- but I just opened and read your reply and thought it was lovely ... (Thanks for the encouragement! it means a lot!) ... so I highlighted your text and then hit "control c" to make a copy of it, and then "control v" to paste it here, and voila!

    The following is from Morgan:

    Ling, you can have too much sex.. just so you know, having it a lot doesn't give the man's body enough time to restock, if you know what I mean. Many people think that having constant sex is helpful, when in fact it can make it harder to conceive, because the sperm doesn't give replenished. Sorry, if that seems a little graphic, but just a fact of life.

    Merrill and tsampa, I was pretty ill when I had both my boys and working 32 hours to 40 hours a week, most of the time on night shift. Taking care of children when you are healthy is very difficult, let alone when you are sick. But I can tell you, the fortitude comes from somewhere deep inside where that mother instinct is, and you just do what you have to do.

    When I look back, I often wonder how I did it, but I guess I did all right because both of them have turned out to be good, caring men. I sometimes think when kids are raised around a chronic illness, especially men, it tends to make them more compassionate, as opposed to people who've had no exposure to the struggles some of us face.

    I just want to reassure you that the mothering part of us is stronger than any chronic illness and I've never regretted my decision to have kids, and deal with illness and them. I hope that helps a little. morgan

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