POTS SUX

It has really been an emotional week. Since “the diagnosis” things have not been good. It took a couple of days for Lori before it really sunk in. I think she just built this wall around her, refusing to let anything in. This POTS thing is really bad from what we have read. There are people who have it much worse that Lori, but that’s hardly good news. A lot of the people who have it treat it with high sodium, high protein type diets. It is still freaking us out that the treatment for one disease makes the other one worse!

We bought a new Blood Pressure machine. It is one of the wrist types. So far it seems to be working quite well. A lot easier to use and gets readings the other one wouldn’t. The craziest reading so far was a BP of 85/55 with a heart rate of 163. Unreal stuff goin on here!!!

We also went out and found her stockings last week. She ended up having to go to the full pantyhose type (to the waist). The thigh high would have cut in to her thighs too much and/or would keep falling down. The frellin things cost $110.00. Now that we know what to get we have checked online and can get them for about $20.00 less.

Lori did notice a difference when she wears her stockings. They really make her legs hurt when she takes them off though. She wore them for two days and then kept them off for two. Today she had them back on again. She is sleeping now, wasn’t doing too good this evening. For some reason she got an upset stomach and threw up about an hour ago. Not sure what that is from. She did say she had a bit of a headache earlier.

We have an appointment with Dr Peditto on Thursday. I’m curious as to what she is going to think of this latest “condition”. She has always given us good advice in the past. We’ll see what happens on Thursday.

As I said it has been an emotional week. In addition to dealing with the POTS diagnosis we made the decision not to go to Atlanta to see Dr. Tumlin any more. If you keep up with this blog you know Dr. Tumlin is moving his practice to North Carolina. We just don’t have the resources to fly up to see him and it is just not practical to drive. 2 tickets and a hotel for one night will cost around $500.00. Throw in some meals, airport parking, and a rental car (or a handful of Taxi trips) and you’re easily looking at $650.00 plus the two days downtime. I wish we could do it, but we just can’t.

So, now we get to find a new nephrologist. This has been weighing heavily on Lori. We liked and respected Dr. Tumlin so much. The one good thing is he was about to start a new treatment (the chemo did not work). We have not started it yet so starting with a new Doctor at this time would be good. There is a large Nephrology group in Tampa that we are going to look into. Hopefully they will work out.

Lori also heard from Jim at the Spa this week. He is now officially in charge of the Spa (congrats Jim if you are reading this). Lori REALLY misses working. It was great to talk to Jim but it also made Lori sad. The addition of POTS has added to the reality that Lori may never be able to have a regular job again. It was another blow to Lori’s emotional well being.

On Sunday Lori received a call from her Mom. She told Lori that she and Lori’s Dad were going to sell their condo and move to Kingsport TN. They have both mentioned this before, but this time was different. They had made an appointment with their realtor. It was more than just talk now. This really pained Lori. It really means a lot knowing that her Mom and Dad are near by. If something were to happen to them OR to Lori I know she would want to be close. It bothers her that she can’t visit with them as much as she would like to. It is just too hard on her. She can hardly take a shower by herself and many days she could use help just getting dressed. (I’m getting very good at blow drying her hair). Even though she can’t visit it is very comforting knowing they are there. She was crushed thinking of them leaving.

Yesterday we found out that their plan is to stay in our area (if they can find the right house that is). That brightened up Lori’s day a lot to hear that. Now we just have to hope they can find something they can be happy with and still be close.

Combine all of the above with all of the conditions, medicines, diseases, doctors, etc. Lori goes through and no wonder she had a really bad week. I have always wondered how much she can go through before it starts to get to her. I think I know now. She has had some “feel sorry for yourself” days before, but nothing like this. She is simply tired of it all. She actually appeared to give up any hope of ever getting well enough to lead a semi normal life. There was nothing I could do for her except listen and promise to be there by her side through it all.

After many hours of talking and crying she was feeling a little better (emotionally) today. I know she is still feeling overwhelmed (you can’t fool me Lori). Maybe talking to Dr. Peditto will be a good thing for her. I hope the next couple of days don’t bring too much extra “stuff” for her to deal with.

She just woke up and came in here where I am. It looks like her “Lupus Rash” is acting up again. . . . . . . and away we go!