Jenn202

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!

I am almost 35 and people think I am in my mid 20's.......... I'm not complaining!! lol

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/hypothalamus area, and the rest of the body...which is common with dysautonomia.... the signals are not being sent correctly thus not telling our vital organs that control hydration to maintain properly.....

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!!

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 have a string of luney tunes.... Hang in there !!

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......

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 wait..I think about 7 hours..... It was fine though... I just brought a book, theres a cafateria to get a bite to eat, I actually made "friends" with a bunch of people waiting with me....I think we all knew each others story by the time we were ready to go in! lol You might get in right on time...... But I would prepare for a wait and bring some things to keep you occupied. We stayed at the Hilton right on the Campus of the Medical College... It was just easier for us....its right next to Dr Grubb's building... Its a tiny hospital...... so its not like you have to navigate! lol I'm sure others will have more advise or possibilites of where to stay..... Good luck to you, and I hope everythig goes well!!

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 !

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 get sick until I was in my 20's.... I still have health issues BUT I am better ,and I ended up gettng married, and now at 34 am finishing my degree.... Dont put pressure on yourself and remember that you have accomplished and learned more than anyone sitting in a classroom for the last 12 plus years of their life.... you are living the real thing and suceeding.... Take Care

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.....

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 seeking opinions even having them now. You are your best advocate and deserve the best health care and to feel everything is being explored so If you can manage to look at other options I think its a good idea. I hope you feel better and can get some answers soon!

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

Let us know how your date went..... have fun...!!

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

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 is right for you!