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Jenn202

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Everything posted by Jenn202

  1. This is a touchy and difficult subject for all those with a chronic illness. 24 is so young and you have so much time to consider children. Your condition might completelychange. I am going on 35 so my clock is ticking. My husband and I have been discussing adoption as a possibility in a few years.... For you, I would definetly not get too discouraged...you technicall have 16 plus years to have your children and so much can happen. Although I do truly feel your frustration and pain b.c I have reall yfelt it since I got married 4 years ago...... Hang in there!
  2. I am almost 35 and people think I am in my mid 20's.......... I'm not complaining!! lol
  3. My biggest issue is lack of good celluar hydration. My tissues can retain water and I look overhydrated, BUT In reality I am dehydrated b.c I am not getting the fluid where it needs to be. When I saw Dr Grubb he explained that b/c of my collagen issue that the fluid actually leaks out of the veins and into the tossue since the collagen is not as suportive as "normal" collagen would be... He described it as a buildig make of steel where as mine is made of webbing..... I am still in the process of reconfirming this diagnoses and the theory. Another reason can be the disconnect between the brain/
  4. I'm so sorry that you are having it so rough right now..... We're all on your side here. It is so difficult to be so sick and not get validation. Hang in there!!
  5. Oh my goodness what a day you had! I have been there so many times... I have actually stood up, grabbed my medical info out of a dr's hand and walked out he was so aweful. The good thing is you had your supportive hubby there,.... I bring mine to all my appts as well b.c it makes you "legit" to some of these Dr's... SO sad a woman has to have a man behind her for validation, but it does work. they can be our advocates when we are not up to the job....... Anyway, I hope you can find a new PCP soon. I know how hard a job that one is.... I think I finally found a good one a few months ago after
  6. I get fluid pooling and off...there seems to be no reason for when it happens... I dont have any ankle swelling, but a noticable difference in the amount of water on my legs and back of arms...... Then I pee it all out after a few days..... I do not have skin color changes though......
  7. I saw Dr Grubb last year so I'll try and answer some of your questions. I brought all my workups ...I didnt fax ahead of time.... Being as specific as possible is best b.c it only can work in your favor.... make sure you have every question you want to ask.... I made a list for a week ahead of time ..I would jot down things As I thought of them..... They reviewed all my records before Dr Grubb came in to see me..... I saw his NP Beverly first ( very nice lady)....and she and Dr Grubb went over what I brought with me...... I think a "timeline" or synopisis is very good to have. I did have a wai
  8. I would definetly keep pursuing other Dr's and reseacrh other options.... If you do not feel you are getting what you need then be persistent and keep going for second, third, forth opinions,,,whatever it takes..... I know its tiring and hard to do, but one ting I have learned is that the Dr's will not come to you so you have to keep putting yourself out there and researching. Feel better and know there will be an answer, hang in there !
  9. I agree with mom4cem - In this country especially we define success by "what we do for a living" What you accomplish in terms of "degrees" are nothing but a piece of paper... It has NO merit to real life and what you have to face every day..... YOU are an accomplishment on its own..... just by never giving up and living every day to the best of your ability.... and the future can do funny things... you never know what great things can happen I think Online courses are great if you are interested...take something that really appeals to you and that you love. I know how hard it is.... I didnt
  10. I've taken this drug in the past to treat my Lyme infection along with Biaxin. One of its effects is its ability to penetrate the cell wall for better antibiotic effectivness.....
  11. I know its tough to do, but I feel its important to never stop looking for answers.... What one Dr misses, another picks up right away... Thats been my experience for years since I have been dealing with Lyme and POTS issues.... I still seek out as many opinions as I can from all areas medically and holistically, and I know I will probably never be done finding out new info/things You may get a bunch of strikes but when you hit on that one bulleye it is worth it all...... From doing this I have finally been able to assemble a good team of Dr's who I feel have my best interest, but I am still s
  12. I have to acho the others on seeing a urologist. I have had bladder problems for years now, and I finally found out that it is being caused by the Lyme bacteria in my urinary tract.... But I had to go to a urologist to figure it out.... They are experts in that filed and can run lots of tests.... feel Better... Bladder issues are aweful
  13. Let us know how your date went..... have fun...!!
  14. i'm so happy for you! I really relate to you b.c I went through a similar situation for years... Now I feel SO lucky to just have to make a phone call and a nurse comes here puts a line in and I can hook myself up whenever I feel like it.... Its like a miricle! My IV pole becomes my buddy on some weeks.... I just carry him around with me wherever I go... I have gotten pretty talented with him.. I can actually vaccum clean and cook all with him in tow! LOL! Hope you feel a lot better today
  15. I know I have written this a trillion times but I have to once more: I LOVE my total Gym...or the Pilates performer... I have had so many pieces of excersise equipment in my house over the years and this hands down is the best..I use it almost every day..... You can go at your own pace, you can lay at an incline for many of the excersises which is SO great for many people here...... It has gotten me in the best shape I have ever been in... I used to do free weights but all the standing and bending caused me to not be able to get as good of a workout in. Good luck and I hope that you find what
  16. One thing that has helped me get through that part when I was real sick was to put myself in the dreaded situations so that I could realize that no matter what I would be ok If I was having the worst day in the world and planned on not going anywhere but then realized that I HAD to go ut and get such and such b.c noone was around to do it... I wouidl just go for it..... The I woudl realize I made it...I did ok... and life didnt stop... Although I dont condone driving to those who feel dizzy etc.. That is just an example.... even having company over...... I would just do it...and I finally real
  17. YAY!!! So glad to hear this! You deserve a break! Also so sorry for you ordeal at the neuro this morning....... Feel better real soon and hope having IV fluid access helps you
  18. I have had to bang down 100's of doors to get just a few Dr's to help/ understand me through the years so I am sure you are not off base. Unfortunately I have learned that with anything chronic or poorly understood by the medical community you have to be your biggest advocate and be the one to take charge of your health..That was such a scary concept for me to come to grips with years ago b.c before I became ill I always thought you got sick...you went to a Dr...they helped get you better..... Its so frustating to realize its not always that way. I never give up with research and trying and
  19. I hear you... Its so difficult. I think its the invalidation that hurts the most. When my husband or any family member gets sick and complains of hoe aweful they feel I always say... Now imagine this is how you feel MOST of the time and you are required to function ...... Most people would never have the strength or fortitude to get through what many of us get through.....and looking like we are "ok" while doing it. I have had the stomache flu...for most people they convalese until they are better, but I know I do not have that luxury..... I have to go about my business..... Its hard for anyon
  20. i'm so sorry you have been feeling so badly. I can really relate since I got that horrible stomache flu about 6 weeks ago and it is still hanging on.... It is making life much harder... MUCH My GP said that it is lasting 6 to 8 weeks in healthy people.. I was like GREAT ..waht does that mean for me?? 2 Years??????!!!! Anyway, hang in there as best you can........ take it one step at a time and you will get through. Ihope you start to feel better soon
  21. Great post and Article OLL!! Its very true that healing begins in the gut and its of most importance to get that in check... Holistic medicine combined with Western is always the best approach..... I just wanted to add that its also important to seek the help of a very good Alternative practitioner .....preferably one who uses muscle teating or ART to help determine where your body is and what it can tolerate..... many times are systems are not strong enough to go through a cleanse or tolerate certain alternative modalitites or supplementation, and have to be brought back up to strength befo
  22. I am just wondering if you have been checked for Gall stones?? Gall stones will give you MAJOR gas pain throughout your rib cage and back...also stomache.... I got gall stones from IV Roecefin I did for lyme years ago and I was writhing in pain I thought the gas would kill me.... After an ultrasound I found out I had 3 large stones.... thankfully they were reabsorbed into my system after a while, but I could only eat low fat foods like baby food, toast and cereal for a while... Just thought I would suggest it to you since it sounded similar to a gall stone attack.
  23. Rita - you might want to go see a good naturopath that can help you with herbal protocals, and other supplements.... these are great additives to help with health, but from experience I know its very important to be monitored by someone who has knowledge in this field. Also having someone who does muscle testing, or Autonomic relfex testing ( ART) is a plus since you can get more specific with what your body can energetically take and at what amount. Good Luck and glad you saw some relief!
  24. Dizzygirl - Thats what I get when I need IV and I do fine.... 1 liter a day is nothing... SO glad you got the script!!!!!! Now you dont have to worry when you need hydration
  25. Thanks for all the replys I looked it up last night and from what I gathered if you have a kidney problem, or other organ problem that causes your body to not properly elmunate fluids then it can be dangerous, like what Belinda wrote about the guy in the ER. Other than that the only info I got was about Hyponatremia which I have had,and know that it can bemonitored with blood work to make sure electrolites are ok especially sodium levels. Ernie: When I was on DDAVP I had a terrible time with fluid retention and "overhydration" although I know the fluids were not going to the proper place..g
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