AJVDK

You all did a great job. I laughed so hard. I love the ending!

Congrats!

Hello, Sorry I am just getting to this, this is the first day I am able to get back into things as I been so down. For my IV's I do a liter over 4 hours. But I only do 4 liters a week right now. Amy

Hello and Welcome! Glad you found us!

Thanks everyone for the support. The hospital call today, and everything is a go for monday for Blake, so hopfully everything will go well, with no problems!

(((((((Hugs))))))))) Think of you, hope todays goes quick.

I thought I would drop a line and say ?hello? and let you all know how things are going. Blake?s ( Blake is my 5 year old son, that 2 years a go had a baseball sized mass removed from with windpipe, and around his leg lung.) CT results cam back yesterday, and no new masses! Thank goodness! He still has to under a scope/ possible repair surgery on Monday, to see if they can help his airway open up, it remained mostly crashed even after the mass was removed, they thought as he grew, it would open up, but it has not. Please keep in you thoughts, and prayers. Well we got some good news finally, As many of you knew I been having problems with my cardio, and a few weeks ago, he thought we should pull the PICC, for risk of infection, (even though there is no sign of infection). Also his office went on and on about how I should have out grown this by now as I am 27. (so I guess we are to out grow POTS?) Anyways, my family doctor step in and took the full orders over. I now still have the PICC and am now getting fluids every other day! It?s been helping so much! Now if we can get the migraines under control I would be doing great! But I got to look at it like this, things are getting better, I have a doctor that cares, my family is still fighting right along with me! I guess what I am saying, even thought things are what I wish they where, I am still very lucky! Happy Hoilday!

I been there. It's so bad that is seem like everyone has to go though one of these appointments. Hopfully one day there will be better doctors out there, and POTS, will be a common disorder that docotr know about, although I don't wish this on anyone. Sorry to hear about your appointment!

I am so happy for you that you have a great Doctor!

I just wanted to drop a line and say I am thinking about you. I havn't been around in a few days, we been busy with our son at the hospital for test! But I wanted to say I hope you are doing better, but I am gald the antibiotics are working. I still hate taking my due to how they make me feel, but if it takes care of things then hopfully we are all going to get better! Wouldn't that ge great! Hang in there!

I can say this has been the hardest thing for me, I find myself not wanting to cope with the POTS, and Lymes, as I find myself thinking other doctors have been wrong, maybe they are wrong, and I will get better. Deep down I Know this is whats wrong, and that I need to leanr to over come this, and cope with it, but it's very hard. I can say once I kept pushing for better meds, and treatment, I have found I tryied almost everything with little improvment. But the good news is I am out of a wheelchair and having about 5-6 good hours a day, so I am getting there. Even if this is it, its ok. I can say that I am getting better at the coping by going to theapy and just talking about the things I lost, but I am finding that this "new life" can be better in differnt ways. At least I get to slow down and spend time with Blake, and my husband!

I went on a cruise last november, and we spent one day in Costa Rica, and I loved it. It was awsome. I jus paced myself, and it wasn't bad. They best thing is if you have a wheelchair as that will help though the airports, I am not sure if you are like me but if I stand to long I will pass out, also compression stocking really help, and lots of water. Could you ask your POTS doctor is he/she thinks you could make the trip, it a nice chance to get away, and enjoy somthing new. If you go and you have a chance we spent a few hours on a black sand beach that was on the nation rain forset reserve and it was so peaceful, it fact in my bedroom I have tons of photos from there on my wall so on bad days I can think about that day and how great it was, and know why I fihgt this... so I can get back to traveling, and my photography! If you want I can email some photos!

Michelle, thanks for letting us know! Melissa, you are in my thoughts and prayers, I wish you a speedy recovery! Amy

I have sleep problems, and migraines, but not sure if they are related. It will be intresting to see what everyone else says!

I am a lefty, and so is my hubby, get this though or son is a righty.

Well we found out today my son has to have surgery again. So please keep Blake in your thoughts and Prays. Blake is having a CT scan with dye, and sudation on the Dec.7, and Surgery on Dec. 18. They believe that the mass in his chest in 2004 caused the trachea in his chest to not grow right. They where hoping that, as he grew that so would it, or at least open up more but after today?s appointment, and test they are going to be sending him for surgery. I feel so bad for him. He finally starts doing better after the last two surgeries in 04, as the cracked his ribs to remove the mass. I just want my son to have a normal life. Here he just turned 5. I feel like if one thing happens I am going to lose it. In the last week, I was deained SSDI, told by my cardio doctor?s is he washing my hands of me, his nurse said I should of out grown this POTS thing my now, I am looking for a Cardio now, have no one for my pacemaker care, my PICC line is going to be pulled in two weeks unless someone picks up the orders. So I am going to lose the help the IV have made. I still need to have a another CT scan to see in the mass in my head is getting better, my son is now sick again, so I feel so bad for that. My mom is going to mayo later this month for a biopsy of her kidney as they are seeing if here cancer has spread. Then to top it all off I just found out my grandmother is also having surgery in three weeks. I been getting really down about everything, but I know I have to stay strong for everyone. I know we will get though it. It?s just going to be so hard! Please keep my family in your thought and prayers! Amy

Well as for right now I don't know too much. I went to my family doctor on Monday, and he seemed really upset with what my cardio is doing. So he said he was going to call them today and get back to me. Well as of know I still have not heard anything, so I am guess theres no news yet. But get this my home care nurse said my cardio called and said to keeo the orders, and when they are down in three weeks they are "washing there hands of the deal, as I should just out grow this" then they went on to say "they don't understand why I am not getting better". So I guess Mayo and Cleveland don't know anything as they both say I have POTS Get this on, the only thing SSDI was waiting on to make there dision when the deained me was this same doctor. I am so mad right now. I guess I need to suck it up and out grow this! I need to find a new doctor but Its going to be hard as almost every doctor belongs to this large cardio group. Plus to top it off my husband insuace is change so they have to be in the "network" too. I don't know what to do! I just want to roll up in a ball, and not come out, I want to cry, and scream but I am to tried to even do that. I am so sick of feeling this way, and now to top it off I feel crasy...... like this is all in my head. I just want a life!!! Venting and down, looking for new doctor! Amy

Congrats!

Happy B-day!

I got sick when I was 17 I was dx with NCS at 19, and POTS at 26, I am now 27.

Hello, I use oxygen when needed, (2 liters) About 8 months ago I use it all the time, when I was in the wheel chair I could not do anything without getting winded. My doctor order it as it for me as it did help. I also have culster headaches so the oxygen help with those. My insucane covers it because the headaches.

Hello All, Well I went back home this week to see my family for thanksgiving. When I got back home I had a letter from SSDI. I lost my reconsideration. So now I am on to my appeal. So I am going to file my appeal, but am not going to hold my breath. Part of me thinks maybe I should try to get a fulltime job, I need one to pay the bills, up I can?t even get up off the bed half the time, from dizziness, or the headaches I have all the time. I am not sure what to do. I am just so upset. I now been dealing with for a year, and to get the appeal, to get a court date it could be another year or more. I think they just want us to give up! Then to top things off, my cardio wants to pull my PICC now. Get this he has not seen me since the day he order the PICC but now wants it removed as he is worried about infection, with my pacer. (Now don?t you think they should of thought of that before) anyways, my site looks good and has had now problems. My one doctor wants the orders to be increase as it is helping, but my cardio now is like, I think we need to pull it, and see how you do. This has been the only thing that has seemed to make a good improvement and now they want to pull the line. So my husband calls my cardio?s office and says we want to make an appointment to see him, but he is booked till Feb. My husband ask to speak to the nurse, and he tell her we want to see him before the PICC line is pulled and she says he only going to keep the orders for a few weeks and orders to have the line pulled right before Christmas. So he?s really mad, as they will not see us before they pull the line. So for now our plan is to go talk to our PC on Monday, and see where to go from here. Plus I have to go for a CT scan again to see what?s going on with this mass in my head?. I just want to scream. I can?t take much more! Thanks for listing! Amy

I am sitting around tonight. I can't sleep due to the headace, and chest pain tonight, but don't want to go to the hospital, as there really is little they can do. I get so sick of feeling this way...... I wish somedays this would all just go away. I feel bad for venting as many of you have it worse then me, so I feel bad for complaining. I just get so tired of all of this. Plus my arm look like a burn or somthing as I broke out all over from all the tape they have used to the PICC. I am trying to keep it clean, and keep it from getting infected that all I need. Well sorry for venting...... see how I get when I can sleep.

I know what you mean, I hope there are able to find the right med, or right group of meds! I got a large mix of meds, and am still having the doctors up a mg hee and add a med there. Its a trail in error thing all the way! I hope they find the right mix for you soon! Thinking of you!!!

Welcome Back! Glad you are home! I home on monday they will find a med that going to work for you!