Jenn202

Hi Ling - I suffer from what it called Interstitial cystitis...which is painful bladder condition. It can cause lots of symptoms from chronic bladder infections to just pain cramping and burning... I have had 2 cystoscopies this year , but never had the hydridistention ( sp?) I wish you luck and that the procedure will go fast. I know that it is not a long procedure. The cysto was not pleseant but It was ok. Anyway if IC is what you end up diagnosed with it is a controllable thing ...diet plays a big role and avoiding acidic foods. I'll be sending you good thoughts. BTW: you can check out www.ic-network.com

Hi mary Jo - If you do a search there has been lots of discussion on compression hosiery. I am sorry I am computer illiterate in a lot of ways and do not know how to transfer the links for you.... I have both the 20/30 and 30/40 compression. The 20/30 are usually good for me, although if I am going to travel or going to be up and out for the day I put on the 30/40... They are a little hard to get on at first, but I think I have mastred the art! As far as feeling tight... for me they just feel like they are sending blood up to where it should be and my legs feel supported.... So it really does not bother me. I have even been wearing them in this humid weather. Take Care...

I forgot to add that when I am in these episodes I do not think clearly... I get very irritated and agravated with people and situations..like my brain has shut off. and your description of being poisioned is right on! It slike something else takes over your body for a while, then it goes away and you are your old self again.

Its a hard thig to describe : For me They come on slowly over a period...I feel weaker, I get waves of lightheadedness and dizzyness and feeling like I will pass out, ringing in my ears, heart races, shortness of breath, chills, feverish feeling ( my skin will be REALLY hot), head aches especially in my eyes and upper front of my head, I get pale, nausea, constipation,sweats, feel shaky I describe it to people that it is similar to going into a "shock" like state where your body is depleted of proper blood flow. Its not fun to say the least. I hope this helps!

I think its an individual thing... But I had hyponatremia from water intoxication 3 years ago. I thought I was doing myself good drinking so much free water and instead I made myself extremely ill and ended up in the hospital. I think the key is to make sure that the liquid you drink has electrolites in it. I never take a drink of water without adding some electromix to it....I also make sure to tak a salt tab every 20 ounces or so to keep my sodium up. I take in about 3 to 4 liters a day of Electrolite water, or propel, or emergen C I seem to have a severe hydration/electrolite imbalance problem...not everyone here has it to such an extent so you need to go by what Your Dr recommends and how your body feels Good Luck

I have a major electolite problem so I need quite a bit of salt a day. I take up to 8 grams of salt tablets as well as some salty broth and salt in my food.

Hi Mary Jo - I know most of us here who use compression have different preferences on brands and types. For myself I fist tried the Ames Walker brand b/c they were the least expensive and I was able to "test" whether compression would be good for me and at what Level. I have found Jobst to fit me well and be comfortable...I would also like to try the Juzo brand when These run out. I still own 3 pair of Ames Walker and have found they work fine for me. Ameswalker.com sells many different brands,,,, you can browse through the site and see what looks the best for you. I am sure others will also have some good advise. Good Luck! I love me compression and do not know how I went without them for so long!

Roselover - I am so happy you were able to get to your annual rose show...congratulations! As far as getting in to see Dr's... the only way I got into any of my appts was to be consistently persistent....we called Mayo everyday and spoke to a pateint advocate to get me in... I would of never got in otherwise b/c I found out afterwards that theydid not even have my last name spelled correctly in their computer! To get into Low we sat in the neuro office for 5 hours , b/c at first I had 0 neuro appts/ to get this new appt with Low, I once again called this week and went through advocates b/c had I not I would not be able to see anyone in Neuro until August at the soonest. as far as Grubb...give the office a call..tell them how ill you are .... I think there is a chance you can get an appt. It might be a wait, but very worth it. The squeaky wheel really does get the grease in these cases.... so dont give up hope..if a door shuts reopen it... I know you will get into the right Dr for you ... Enjoy the rest of the day...I'm so happy you were able to have such a wonderful day with your kids

Hi emily! I'm sorry you have had such a bad bout with insomnia. I used to suffer from it terribly... In the last few years I have gotten back on a normal sleep schedual. I still have episodes of not sleeping well. I have a week or so where I feel wired and only sleep about 5 hours a night and am wound like a wild person all day. Then it just goes away. I dont know what advise I can give you. Have you ever tried melatonin? I took that for years when I had problems sleeping and it helped a lot. I took a low dose from Vitamin Reserach Group..... Actually I noticed that after a few years of melatonin is when my body started just going to sleep on its own and doing better. Maybe it reset my timeclock?? I also used to stress from not sleeping and then a couple years ago I just resigned myself to the fact that I do not sleep as much as I used to and took the stress off me of trying to sleep. That actually helped! I try as much as I can to stay on a schedual. I notice I get the best quality of sleep if I am in bed by 10pm....I usually sleep through ( With 1 or 2 bathroom breaks) the night and wake up around 7:30. A sound machine, fan, air purifyer or any background noise also helped. Is the insomnia from not feeling well, or feeling restless or from all of thee above? I hope that you can get some rest.... Try for now not to stress too much about it and take it for what it is..... ( I know easier said than done!) But I do feel that if we give ourselves a break about the sleep thing the more likely we are to fall asleep. Have a great day

I cant offer any more advise about the heat, except to stay inside in the AC as much as possible, but I can offer self tanning tips! LOL I use Xen Tan...works really well dries quickly and actually looks real. I cant tolerate laying and baking in the sun for a tan anymore... Not only is it unhealthy and makes us feel bad, but it is time consuming! Hope we all beat the heat soon :-0

Thank you ernie and Pooh Bear! Poobear - Yes I am not going expecting Dr Low to save me or anything. I have decided already that Dr Grubb is my Dr and that noone can surpass his knowledge and care. But I do think it would be incomplete without following up this testing. Even Grubb told me Low would say nothing more than for me to take Mestinon, which Grubb already wants me to start..... I think it I will be going more for my Dr in Boston than anything else. Ernie. I am thinking about you and praying for your family.. I send you good wishes.

I know how hard ti can be. I have had my share of days like your described. I agree not to close the doors on the meds either. There are so many different ones, and you might tolerate one of them. Unfortunately with us we have to do many trial and errors before we find something that works. The hardest thing with chronic illness is not feeling we are validated by the people we love. I was wondering: would your husband be willing to go to a Dr appt with you? Sometimes this helps so much b.c it is such a complex thing to grasp, and a Dr can better express it. Or would he ever be open to attending a counceling session with you? Mu husband and I started this about a year ago.... It really helps b/c a counselor is great at understanding and explaining the emotional side of a chronic illness. Feel better..... And please take care of yourself

I spoke with a patient advocate at Mayo Clinic this week and told her about my experience there. She was very nice and offered to sort things out and get my a personal appt with dr Low if I was willing to rteturn to get the results of my testing. After long thought, My husband and I both agreed it would be in our best interest to finish what we started. I have an appt with Low for June 27...all the rest of the tstubg will be that same day...so it will be a day or 2 stay at the most. I guess I am just wondering if I am doing the right thing? I wanted to throw it out to those who are patients of Low. I feel if I do not see him than this horrific trip we just took will be in total vein.... Thanks Guys

This is a post I can REALLY relate to right now. I just returned from May o Rochester with the same feelings. I am so very sorry you didnt get what you were hoping for there. I found many of the specialists had the attitude you described. All I can tell you is what I am trying to do, which is be happy I went b/c had I not gone I would have always thought "what if"..... Now you know ...you have gone, done your best, but they were not the ones to help.. On to the next.... I have realized that there is always a "next"..... Unfortuately there are lots of stupid dr's and a handful of caring ones that really want to help out there. They handful are hard to find.....we have to really do some digging ... and in the process will run into the ones that just dont get it. Hang in there,,,,, I know it makes us feel so invalidated when we have a dR not believe us... But know that this Dr did not have the proper knowledge or personality to help you... You know your body the best and you know what helps..... That is what is important. Take Care of yourself , I'm sending you Lots of hugs

I dont know how I totally missed this thread! I'm from Harwinton CT.... About 2 hours from New York City and 2 hours from Boston..... I guess no other New Englanders??

Ernie - I am so very sorry for your loss. Please know I will be thinking of you and your family this week. I know its a tough decision to make whether or not to go. I lost a family member a couple years back when I was very ill, and I had a similar dilema. I opted not to go to the services, and I was OK with the decision in the end. For me, being with the family was what helped me heal. I think no matter what, being with your family at a time like this is helpful.....the support they can give you is what you need. Like others here said , if you are not able to physically attend the services, you will be there in spirit. Take Care Ernie and my thoughts are with you this week.

Thank you so much everyone Steph - Never ever apoligize for anything!! You are a tremendous help and have lots of great info and advise to give.... I always value your opinion you gave me some great tips!... The Radisson was a wonderful place to stay...the people were really nice, newly renovated, and right near the hospital. I thought of you drinking all that lemonade when I was at Subway eating lunch!! LOL Its not anyones fault that my Dr and Mayo screwed up...unfortunately its just how it happened. And maybe had I seen Dr Low it would of been a worth while visit but I guess I will never know. I am sure had my Dr in Bioston got it together and made sure that Low saw me things would have gone much easier...... But I think once you get in the system at Mayo its fair game. Oh well.... I guess I have to put it behind me. I did everything I could on my part to make it work short of breaking into Dr Low's office and dragging him out by gunpoint! LOL Corina: You are so right...it helps to just say it was not meant to be and put it behind you.... Shelby: I am so glad that Dr Fealy was able to help you ...... I had that shock test also... It was painful enough on the low level I cant imagine what it was like on high!! You poor thing, and here you thought you were being a baby! LOL Julia: I am sorry that you had a similar experience in NY, but I am so glad to hear that you at least got to see some Dr's and get some answers...even though not all you were expecting. Morgan: I'm kind of beginning to agree that the big Dr's are not always the best..although I have to exclude Dr Grubb in that list b/c he was so kind and gave me so much valuble info and time. I guess when you go to Mayo or the others its a toss of the coin. Roselover and Dayna: Thank you for your support! Dayna... I am sure I sound biased, but I would see Dr Grubb if I could also.... You guys are wonderful... Have a great weekend..

Lisa, Persephone, Ernie, and Emily - I feel better just from hearing your words of encouragment. Thank you Thank you to all of you!! I know that all of you have experienced the same type of thing ....I guess its the nature of the illness.... I always see myself as a strong person pretty able to judge myself over anyone else. But I have to say Mayo actually made me question myself again and freak out that maybe there was something else wrong with me that 10,000 tests havent found yet..... Emily - You are so right about had I not gone... I would have questioned myself forever about the what if's.... I guess the Universe is keeping me from seeing Dr Low for some reason... My husband thinks maybe its to protect me, that the visit might have been damaging to me. I guess we will never know. I havent heard the term "knuckle sandwich" in so long!!! LOL My grandfather used to say that to us as a joke if we were acting up as kids... I think there are MANY Dr's that deserve one! Persephone: I never asked how was your trip to Dr Mathias? I hope MUCH better than mine?? Good night.. Thank you for making me feel so much better tonight. And againg sorry for the rant, I just had to get it out so that I could be done with it

Hi Lisa - I'm glad that your prodedure went well, but sorry you are not seeing too much improvement yet.... I hope you do really soon

Well I just got home today from my Mayo trip. I am not sure what to say about any of it. Unfortunately it was everything I wasnt expecting. I ended up seeing Internal Medicine which was the biggest joke...the Dr was arrogant, pompous and rude..... It was everything I could do not to punch him. I found out that I did not have any neuro appts... even after I called my Dr here all last week making sure he had made another phone call to referr me to Dr Low... I ended up getting a neuro appt..but not until the 22nd of June!! Like we could afford to just fly back on the whim!.. and they had me seeing Dr Freely ( sp?) not Dr Low... We ended up sitting in the neurology office for 5 hours yesterday to see if we could get in to see Dr Low... Unfortuately ( or fortunately however I look at it) Dr Low could not see me until The 7th of June which is next Tues... The clincher is that I caught a bad cold while I was there and by yesterday was so ill I could barely sit...... Last night It got worse ( I think bronchitis of some sort) so we had to fly home this morning and bag the rest of the trip. Botton line is The testing I recieved there were all the very same tests I have had over and over at other places... nothing new or exciting. The Dr's I met were far from quality as far as thinking otuside the box ..seemed very robotic and awefuly clinical...... I'm sorry I am going off tonight about this, I am just so bummed that it turned out the way it did. And this is in no way to disrespect anyone elses opinions or experience at Mayo... I know that we all have different experiences and different perspectives, so forgive me if I am comming off harsh. I just feel defeated, out of lots of money, and For myself, I could have gone and had those same tests repeated near me. I think a return visit to dr Grubb wuld be far far worth more than trying to come up with the money to go back to Rochester. Well thats my story... I;m going to go put my head down and hope I get over this bug aaaaaaaaaahhh!! LOL

Hi Ling - I do notknow your personal situation with POTS but I do know that there are many safe neds to take during pregnancy. When I went to see Dr Grubb we discussed this in length. His view was that the most important factor for a healthy baby is a healthy mom, and that if it takes meds to make you finctional and stable while pregnant that it is OK... He said that he has has 100's of sucessful pregnancies. Maybe when you see your Dr you can discuss this with him.... You might be able to get back on something that will help you to feel better. Take care of yourself, and I hope that your Appt goes well!

Thank you so much everyone!! I am in a major POTS hole right now and you guys just really boosted me I havent been in the hole for about 2 months...good timing huh? I am praying and hoping that I will be able to make it there by Wed...right now it seems impossible, but I am going to TRY not to stress. I have been waiting for this appt for so long I cant imagine having to cancel it. Emily - I do miss DINET when I dont have time to check in! You have all become a special part of my life and give me strength Mom4 - Thank you! I have to get my mind together so that I can get my list done. Tearose - Thank you as well!! I am not sure how I will handle the back to back visits.... But I feel better knwoing the tests are not a greuling as I am thinking. I think the hardest part will be if I have to fast..... I will update all of you..... Have a great weekend

Roselover - I forgot to add in my last post about getting into Mayo: I was put on a waiting list ..but we called every week for a month and really pursued it and pushed for an appt..... I found that if you are more aggresive about the need to get in they will listen more. Of course not mean aggresive, just in their face more than other patients so they remember you. I know Dr Low's secretary is very nice and she was very helpful to me. I dont think I would have gotten the appt ( or definetly not as soon as I did) had I not kept on them.... Just wanted to put that out there for you. I hope you are able to get an appt soon.. Good Night

Thank you Ernie for your good thoughts..wouldnt it be nice if we could all caravan down together??!! Roselover I like your Idea about Dr Low centerpeices!! LOL I'm flying from CT.... Not too far but far enough..... Flying is tough when I am feeling ok, but I dont know how it would be in a flare..... I'm going to try and stay calm about it all and take it as it comes. I appreciate you guys so much! Your support means more than I can say in words.....

Steph - Thank you so much for your support and tips for Mayo! I'm definetly a little freaked out right now .... I know that is not helping this flare.... I also know that when I go into one of these flares to get over it I have to be still, lie low, and get IV fluids on and off... It usually passes in a week or so... But I cannot put any stressors on my body or it gets really bad..... why coudlnt this happen at any other week!?!? aaaaaahhhh! LOL I hope it will be ok next week... I guess I'll keep my fingers crossed We are flying into Minneapolis around 4 pm I think then, driving to Rochester.....so it will be later by the time we get into the hotel.. Maybe thats a good thing. Good idea about asking to postpone the blood work a bit... that might help me. I cant thank you enough for all the help you have given me..it is really useful info, and I have a better Idea of how things wokr there. Have a good night