Roselover

Yes, I've been wondering about you too! My hard drive crashed and I lost all my email contacts so I couldn't email you.... hope you can check in and let us know how you are.... WE LOVE YOU!!!!!!

~Roselover

I'm trying out a health club that has three pools. An outdoor one only open in summer and two indoor pools. One is a theraputic pool (nice and warm) that is not deep (you wouldn't drown blondie) and the other is an olympic lap pool, but still kept at a pretty comofrtable temp. I called around and found the health club with the warmest pools. I love swimming and spent hours in the pool as a kid, but still I kept a kickboard with me in case I got in trouble.

Dr. Grubb told me a couple of things about swimming. One - it keeps you horizontal so less POTS problems, and the water works a little like compression around your legs so even water walking is easier on POTS than regular walking, it would strengthen the leg muscles so that they could help compensate for the lack of vein constiction and that it wouldn't neccessarily make me feel better, but I had to do it!

This morning, I feel a little sore, I'm tired and fuzzy in the head, and I didn't sleep very well last night. Wonder if that has anything to do with the exercise? Sure hope not... I NEED to keep sleeping or my Fibro acts up bad and that will ruin the exercise. With my Fibro, I know from some testing I've had that my body does not produce growth hormone when I exercise or when I don't sleep well and this causes the pain.

I'll let you all know how this trial goes and if I really keep up with this or if I give up after a couple weeks.

~Roselover

I just got home from my first swim per Dr. Grubbs insistance. I love swimming and really enjoyed it, but my heart rate did go up over 160 at one point and I am extremely exhausted and my legs are cramping up. Of course, some of that is par for the course of being out of shape.

Dr. Grubb told me that I had to do it, but that it would make me feel worse. We'll see tomorrow. I know in the long run I will be helped at least a bit by strengthening my leg muscles, but I do wonder about the cardio workout, when just standing is a cardio workout

Do any of you swim? How has it impacted you? What do you all think about the HR stuff?

~Rose

Just got home from my first try at swimming with POTS per Dr. Grubbs orders. It was a nice pool - olympic size. Kept a kickboard with me in case I had any trouble mid pool. But I have to say....

I was EXTREMELY tempted to climb up onto one of the starting blocks and dive in! Then I thought of this thread :-)....

~Rose

Sophia, I'll walk down memory lane with you. I've loved horses as long as I can remember! I love the look of their movement, their smell and riding. When I was in fourth grade, my parents got me riding lessons for my birthday ( we were very poor as my dad was in graduate school at Stanford University) but they found a girl scout troop that I joined and I began to learn to ride. LOVED IT! Went to a summer camp at the same place. BUt, this was western riding. What I really wanted was english....

Then, I didn't ride again until college. I lived in a college town that was known for agriculture and it's vet school so they had a stable and horses. When I was a student I could get great prices and took riding english riding lessons for quite a while. That was soooooo fun! I advanced to some small jumping. And after the begining class, you were expected to go out to the field, catch your horse, clean and prep it, sadle and harness it and then clean it again after before letting it back into the pasture. I think I liked that process as much as riding! Oh.... what great memories!

When I took a trip to England (just before I was flattened with this illness) that was another dream come true. My dad took me, and I was determined to find a place to to go "Pony Trekking". I found a stable outside of Bath and had a great ride - though I was really sore as it had been a long time since I had riden!

Mmmmmm.... I can smell the stable as I write!

Thanks for the memories!!!!!

~Roselover

Tearose - I like the IV pole dancing competition idea! I'll enter! Hee hee..... How about curling? All you have to do is sweep.... ah but that standing up.... hmmmm... you know, cheering IS important! :-)

Defineately either Equestrian - cross country/jumping and/or Diving- 3 meter springboard. I was on a diving team for several years in my youth. I always dreamt of being an equestrian olympian. Kinda hard though cause I never owned a horse! :-)

~Roselover

MM- just popped in for a quick peek at posts and had to add to this... when I saw Dr Grubb in Jan he prescribed Rozeram... it is very new. My doc had to look it up, but it's supposed to be OK long term. My own experiencw was that I slept, but I dreamt all night long and was drowsy.... but if Dr. Grubb is prescribing it, I'm guesssing he's had some positive experiences for some. Just an idea!

~Roselover

Yuk! Nobody should have days like this. Heres a BIG HUG!!!!

~Roselover

Dr. Grubb told me that this is the one area that the autonomic system affects eyesight - in the dialation process.... our eyes may be very slow at dialating either way. I find that this makes it almost impossible to drive at night because I become blinded by headlights coming towards me... after they pass I can not see a thing for a min. or so. Also sometimes I can see one distance fine, but when I try to look elsewhere everything is blurry for a while.

~Roselover

I couldn't think of any superpowers I wanted until I read all your posts... Carmen you cracked me up!!!! I think I would have to say I would want the ability to instantly transport myself and others anywhere I wanted at any time.

I was talking with my husband about how many places we've dreamed of traveling and now we may never get to do that... so this way, we could visit the Bahama's instantly and then go to Scotland, and then Rome....... all without the expense and exhertion of real travel!

~Roselover

Where has this taken me spiritually? I had to think about this a long time before responding because it's not an easy answer. I've learned more about myself through this than I could have otherwise. I struggle, I fight, I cry, I wish and I question and yet the one thing that has not been shaken is my faith in God's goodness and my future with Him.... but I have questioned the purpose for my life. And I have found deep spiritual answers - that even with suffering and losses, there is purpose in my living every day.

I have also been led to ask questions that I had never thought about before and I think that as I ponder these questions, I am becoming better equipped to someday help others who will be asking the hard questions. I want to be ready and understand everything now, but I realize a spiritual journey is just that - a journey and I can't get to the end of it without traveling it the whole way.

I cry and ask God to take this suffering away and to heal me and at the same time I am thankful for some of the amazing things that have resulted from my being sick and for all the things I am learning.

~Roselover

I like this website too. I got a sample of their magazine and really liked it, but can't afford a subscription. I tried out their chat schedule, but never seem to connect while others are on.... I've been thinking I should try again. Thanks for posting this Dayna!

~Roselover

I second Ernie and Morgan... I hate IV's when they are cold - I end up so freezing cold that I shake and shiver. I have to have them warmed or going very very slowly. Also, I think they often use a lower saline solution as a basic IV in the hospital and that may actually cause some of us more problems because though we are dehydrated, the extra fluid just washes out the electrolytes we have. I have a hard time talking a hospital staff person into a higher saline solution and I also do better with the potassium.

~Roselover

Yayyyy Morgan! and Congratulations. My DH and I are celebrating 22 years on Sat.... what day is yours? I hope to do something special on our 25th too!

Sending a virtual bouquet of roses for the bride!

~Roselover

Julia,

I've had pretty severe problems with this in the past 12 months and spent a week at Mayo recently doing the tests Mary mentioned and more. I wanted to establish just what you said - what the root cause was and they confirmed that everything is OK structurally, but it's the autonomic system that's malfunctioning. I too would advise your friend to seek this out. The doc I saw at Mayo was Dr. Szarka and I was very happy with him and his understanding of it all.

I am not young, so Mary may actually have better advise, but I will tell you that for me the treatments that have helped...Protonix, and Reglan until I had a bad reaction to reglan. Now I'm on Protonix and Domperidone which is working great! Still occaisional nausea, but really pretty normal stomach wise for me. Zelnorm did not help me and actually made things worse because my lower gut was working fine (unlike Mary's daughter) which again speaks for the testing because it can different parts of the gut for different people.

Hope this helps or at least gives them something else to look into.

~Roselover

Thank you so much EVERYONE! Your hugs were so needed! I see I am not the only one taking a nose dive this week!

I still feel really crappy, but I didn't cry today - though my hubby says I look sad. But all of your warm and understanding thoughts helped a lot.

Still no answers - in fact, worse than that - more confusion from the Drs office... but I'm just gonna take it slow and not start anything new until I'm ready and I understand why I'm taking it. Anyone have luck emailing Dr. G???? Think I'm gonna try.

Love you all, and thank you so much for letting me cry on your shoulders.

~Roselover

Help! I need a group hug!

Dr. G had me start on Provogil three weeks ago. I started very slowly with low doses increasing every four days or so. Nothing the first week and then suddenly, my brain "woke up". My body was still struggling, but I was THRILLED to think again!!! Then after five days like this, I hit the wall - HARD. Have been sick since last Thursday and each day is worse. Today is the worst POTS day I have ever had.

For the last two days I have been crying off and on all day long. I am grieving my losses, and I know it's right to allow myself this grief when it comes. I struggled in even admitting my weakness to you all, but I knew that God had given me this family that understands and can send me their cyber hugs. I need them right now.

Yes, I'm weaning off the Provogil and when I called Dr. G's office, Beverly said that now we won't be trying Adderall or Ritalin. But she told me to start Cymbalta, which confuses me because I thought Dr. G had said Wellbutrin would be next.

Oh - the helplessness of feeling like a trial and error drug store! "Will it work???? Will it work???? I think it's working.....BAM.... nope it flatten me instead!!!! Pick yourself up.... wait a while and try another one...." and on and on it goes!

I will pick myself up and keep going and I know you will all help me. So I thank you in advance and I praise God for giving me this group and for all the many things he has blessed me with.

Love you all,

Roselover

Just had to add my two cents worth...

I just got home from seeing Dr. Grubb for the first time. And I was accepted into the Vandy study and was scheduled last November, but it was cancelled because my gasteoparesis was flaring up so badly I couldn't get off all of my meds. ( You have to be off all meds for the two week stay at Vandy)

Now, looking back, I would advise you to see Dr. Grubb first. He is excellent at discerning your particular situation and how Vandy might or might not help. For me personally, Dr. Grubb was able to narrow some things down for me that made the Vandy trip not worthwhile for me... (of course there's always value in participating in a study if you have the ability, but right now it would cost me too much financially and health)

Basically, the tests they would run won't give me more info and the meds they are testing are mostly ruled out for me. And Dr. Grubb had new ideas to try. So for now, Vandy is on the back burner. Doesn't mean I would never consider it again, but I am glad I didn't go through that 2 weeks before seeing Dr. Grubb!

OK.... maybe that's a little more that two cents worth... sorry! But hope it helps. It wouldn't hurt to begin the application to Vandy while you wait to see Dr. G....then you're ready if it sounds like a good idea for you.

Be sure and read Sunfishes journal. It's very informative!

Roselover

Hi Susan,

Be sure you click the reply button at the end of the page... I almost didn't see your message in the midst of the quote

I had to wait 7 months for my appointment. However, I do know that if you live close enough, you can ask to be called if they have cancellations and you will be put on a list and you may actually get in sooner. I couldn't do that as I was traveling too far and had to have airline reservations so I just waited it out.

I hope you get in sooner - but it is defineatey worth the wait if that's what you have to do!

~Roselover

BTW: I saw Dr. Grubb on a Thursday and my doctor had the report on her desk Monday eve!!!!! I was impressed!

~Roselover

I think speaking to your neuro would be a good idea... especially if everything checks out OK with the eye doc.

~Roselover

Somthing really interesting that I learned from Dr. Grubb last week - the only part of our eyesight that is controlled and affected by the autonomic system is the dialation of the pupils - basically, focusing. An autonomic system not functioning well may cause the eyes to slow down the ability to focus.

I find that I will look at something and it's fuzzy, but the longer I look, the better it comes into focus - but then if I glance somewhwere else, things at another distance are fuzzy. It just takes longer for the dialation of the eye to catch up with what you're trying to look at - but the actual eyesight is just fine.

Don't know if this fits what you're describing, but I found it really helpful for me and the eyesight problems I have!

~Roselover

Thank you Mary!!!!! That makes a lot of sense. Though, it's not comforting to think I am bleeding - it makes me more determined to call my doctor to follow up on it tomorrow. I really appreciate you sharing what you have learned!!!!!

Love Roselover

Em- I love you so much!!!! You make me feel soooooo good and loved, thank you! It has been a hard couple of months and sometimes I just didn't have the heart or mind to write responses, though, I have been lurking.

I think you should see the GYN too... especially since you know you will be treated well and there's a really good possibility that bacteria could be causing it. Just my opinion...

OK - so I looked back at the lab report because I have to call my primary monday morning. I don't have WBC in the urine... I have RBC.... what DOES that mean???? Is there a difference?

Well, I'll let you know where I go with it too. I really didn't want to see a urologist.... just one more new doctor to see and I'm just not up to it... but Dr. Grubb really wanted me to do the urodynamic studies - I just don't know. Any advice?

After while crocodille!

Roselover

Sally,

Melissa is the queen of stomach answers!!! Hee hee.... but seriously, I concur with her - gasteoparesis can occur intermittantly. Also, the nause can be caused by the stomach emtying slowly - food sits there too long. It was also explained to me that this is all based in the nerves not doing what they are supposed to and just as they may not get the correct message to function they way they are supposed to, they can also send the wrong message.

This was the explaination they gave me at Mayo for my nausea and for the pain I get near my bellybutton.

Hope this helps a little.

~Roselover

Hey Em! I haven't been around much because of energy, then my hard drive crashed and now I'm back from my first trip to see Dr. Grubb. BUT your post caught my eye because on monday I have call my doc for almost the same thing. I had the WBC in urine at Mayo but no infection or anything in the cultures. Then, Dr. Grubb told me I had to have a urodynamic study. Ugh!

Please let me know what you learn or what you find out... if it is a bacterial cause or whatever! I'm going to look some of these things up too. Hope my doctor can find a knowledgeable and NICE urologist for me!

After while crocodille!

~Roselover