GingerA

The fatigue I was told was from the POTS but I have a terrible time finding doctors to help me here so I'm not sure what else may be going on.

I don't have one but I have thought of it but didn't know the expense. I did see something yesterday at Walmart that is a push button like life alert but only costs $45. It calls straight to 911.

I just wanted to take a minute to brag on my sweet boys. I am always on this sight whining about how bad things are but yesterday I got a great surprise. I had told the boys the I wanted to start walking again but they were really against it because they were afraid of me getting away from the house and getting sick. So while I was resting yesterday they made me a trail in a small wooded lot beside our house. The lot is only as big as a house lot but we bought it a few years ago so no one would build right next to us. I had never thought of the lot being useful but thanks to the boys it is my personal nature walk. They even made "seats" from logs along the pathway! Now I can "walk in the woods" and still be within shouting distance of the house.

I'm not on any med so it must be pooling. It has gone down some now. I'm just tired.

When the doctors say "what the matter this time?"

OMG! I have had a bad time with symptoms for the last two days but this morning I am so swollen I can't wear any of my clothes! Not even the sweats! I don't have a scale so I'm not sure how many pounds of fluid this is but what's up with this? I have had small swelling before but nothing like this!

Katy, That is a great idea. I will try it. I was also looking on some sights for aerobic exercise to do with out standing and on tip was to simply put on some music and "dance" while sitting. I sat on the couch and "danced" with my feet up while my 3 year old danced around the livingroom. It was great but I was tired after. It got him moving too. I worry a lot about teaching the boys about being active when I can't be. Most of their mommy time includes watching movies and reading so this was a great change.

I have this happen a lot. Especially if I'm having a bad POTS day. It's like your brain just forgets how to hold tight to something.

I was just wondering how many people have someone to come in an help them with daily tasks. I am trying very hard to get better and to adjust my life for my illness but I have to be honest that there are some things that I can not do. Especially on bad days. What do you do then? I am not bed ridden but I do have days when I need to be in bed all day. Pushing to get up on those days only leads to more days in bed or visits from the ambulance. Do we qualify for home health? I have at least 3 days a week when I am here with just my kids and I am scared.

Maybe you are on to something. I'm an Aquarius! lol

I was at work. I had been battling POTS for a while and the place I worked was adding more and more stress to me (they admitted that they wanted me to quit because I was too much of a liability and "could no longer physically fill my job description".) Anyway the final straw was they (knowing my condition) sent me to the play ground in 90 degree heat with 12 arguing afterschool children. Obviously I collapsed again. I still have not fully recovered and that was 7 months ago.

Kayjay, I know what you mean. I have an above ground pool in my back yard and I lived in it during the summer. However I live in a very small community and there are no indoor pools for miles. I absolutely felt better in the water. Maybe the basis of POTS is an undiscovered mermaid gene. LOL

Thanks everyone. I have been moving slow but I have been moving!

I absolutely understand and feel this way. I have days that I am in denial an think that I can just go back to living my live the way I once did. Or I get on this "I'm going to show everybody that I can still do that!" kick. The price is always a crash. Then anger followed by depression. The feelings of the cycle seem to lessen slowly until someone from "my past life" will say "Aren't you feeling better yet?" or some doctor will say "You will be better in a few months." Then everything starts over!

Thanks everyone for the advise. I am determined that 2012 is going to be a better year.

I was just wondering if anyone has built up their exercise routine to the place where they could do exercise standing up. Before I got really sick I was walking 3-4 miles a day. I really loved it but once I started getting sick I could walk for 1 day then be in the bed for 3! I really miss it but I am scared to try to do any major walking. In the summer I could swim but now I have nothing aerobic to do. I can't afford to buy a bike right now. Any tips? I am determined to get better in 2012! At least as much as I can.

I have this problem too so I try very hard not to let them get even a little bit cold but it usually doesn't help much. I had hoped that if I could stop feeling cold first thing in the morning then I could stop the cycle. I love being bare foot but it seems to make things worse.

I have 2 cups per morning. A doc told me that it would slow digestion some. I am afraid to stop because of withdraw so I'm not sure if it works or not.

Alyssa, I am at a similar place. I have been out of work for 8 months now. I tried to do some consulting work but this illness is too unpredictable to stick to scheduled appointments so I am trying to finish my last case today. Then I am going to attempt to start a business online to offer technical assistance and curriculum ideas. (I was in childcare). Also I am going to try to write some articles that relate to my field. I don't know what your field or interests are but maybe there is a way to do something similar. Online college is another option. I have been going to school online to get my BA and I receive financial aid and student loans that help me. It isn't enough but everything helps.

Sue, I think that all the Walmarts will do that. I haven't thought of other stores. What others so you know of?

Good for you Lieze! I had a bad day last week and my husband pushed me around Walmart in the wheelchair the next day. We live in a very small town so everyone was like.. . "What happened to you?" It was embarrassing so I don't think I will do it again unless it is an emergency. I did find out that I can do all af my shopping on line at walmart and then just go pick it up in a few hours so I think I'm going to try that.

mwise, You are so right. I'm trying very hard to remember that this is the birth of our Lord and not just a job that I have to get done. It's hard but I'm trying. Thanks for the reminder!

I don't believe this at all. I have had countless studies of my heart since I was 16 (I'm 37 now) and was continually told that my heart was in perfect condition. This is why it took my most of my adult life to find a DX. Also, a small heart does not explain other symptoms like heat/cold intolerance and cognitive problems. I think POTS is an autonomic dysfunction. I am not a doctor but I probably know more than some of them do anyway.

Rachel, I'm about 3.5 hrs away but I would love to come. Just let me know the details.

I feel the same way. I am counting the days until the kids go back to school so I can sleep. My cardiologist told me yesterday that they call it Holiday Heart because all his patients have more problems around the holidays. He said not only do all of the holiday activities but everybody is trying to do all of the year end activities right in the middle of a weather change. He said its enough to put healthy people in the hospital not to mention POTS patients.