Upswing

I’m happy to report that I’m feeling much better since my last post. Gosh it was months ago, I always mean to sit down and write a post, but I end up spending 5 hours on Pinterest instead. Not even kidding, I’m a major Pinterest addict, it sucks the life right out of me.

Anyway, right after my last post I got my hair chopped to a pixie. It was the next day actually, I couldn’t stand the asymmetrical thing, it looked awful. The pixie looks 100 times better, but to be honest, I still have mixed feelings about it.

20160428_102453

I’ve had a million compliments on it, from friends, family, coworkers, customers at work, and even random strangers. I still miss my long hair though, and I don’t like the way short hair looks. Every time I see a girl walk by with waist length (or longer) hair, I instantly feel jealous.

However, I admit that chopping my hair has significantly helped my migraines. I’m still having them on a daily basis, but they tend to be less painful! Sometimes lately I don’t feel any pain at all with my migraines, I only have the secondary symptoms. (Secondary symptoms are things like dizziness, nausea/vomiting, light and sound sensitivity, auras, ect.) My migraines can still be severe, obviously, but at least they are not painful.

What I love most about having a pixie though, is that it is low maintenance. At the most I might straighten my bangs and thrown in a bobby pin before I leave the house, but that’s it. I don’t have to waste precious energy on my hair when I’m not feeling well. I used to easily spend an hour or more on my hair everyday, just trying to find the least painful way to put it up… now the most I might spend 3 or 4 minutes on my hair in the morning.

My blackouts and tachycardia are much better too… (not because I cut my hair, don’t be silly), but I started swimming again to build muscle like I used to do in physical therapy. My plan was to take some swim classes at our local community center so that I could be closely supervised by an instructor in case something happened. Unfortunately, I couldn’t find any instructors that were willing to deal with my crazy work schedule though. So I just went to the pool on my own, and got started.

It was REALLY difficult at first. The hardest part was just trying to breath. At first I had to keep my head above water at all times, because I was breathing so hard from the tachycardia. I couldn’t put my face in the water and rotary breath like most swimmers do. In fact I still struggle to rotary breath, even now that I’m feeling much better, but least I can do it for a couple of laps!

The most effective swim exercise (in my opinion) for POTS, is just using a kick board. By holding onto the kick board, it keeps your head above water at all times so you can breath, and all the kicking as you swim back and forth helps to build serious muscle in the lower body. (For those who don’t know, building muscle, especially in the lower body, is very effective in controlling POTS. As your body builds muscle, it also builds new blood vessels and nerves which improve circulation and help prevent the blood from rushing to your feet when you stand up.) Not to mention, it makes your legs and butt look good! (Just saying).

After about a month of swimming 2-3 times a week, my blackouts stopped and my tachycardia and shortness of breath are barely noticeable. I’ve been able to go back off the Propranolol, start using ladders again at work, and start horseback riding again!

Anyone else tried swimming for POTS? Lemme know how it worked for you!

One step forward, 3 steps back.

WIN_20140830_083251

The last few days have been really stressful, I saw my GI doctor on Friday and he admitted me to the hospital overnight for dehydration and to put in an NG-tube. I think I got 4 or 5 liters of IV fluids while in the hospital, which felt amazing! My vomiting is under control now too thanks to the NG-tube. : )
The goal was to get my rate up to 85ml/hr in the hospital, and then 95ml/hr at home (leaving room for me to be disconnected for 1 or 2 hours a day). But then at home I started having abdominal pain and severe diarrhea, so I slowed down the rate to 70ml/hr and used less water when diluting the formula, and so far so good. Its not as much fluid volume as I would like, but I’ll live.
The reason I’m stressed, is I’m switching to a new insurance provider, and we were told during the brief hospital stay that they have very strict policies. Supposedly they won’t cover any of my feeding tube supplies without new documentation, specifically they want new motility studies. They need to be very recent (within 30 days) or they won’t consider them. Then they will want additional testing every 6 months if I continue to need the feeding tube. When we got home my dad and I read through the policies regarding feeding tubes and enteral formulas, and although they required documentation for coverage, there wasn’t anything about new testing, repeated testing, or even what kinds of tests were necessary for “documentation.”
Hopefully everything will work out, but if not I’m looking at a lot of unnecessary tests. The main reason I need the tube in the first place is my vomiting, the poor motility itself I can manage by staying on a liquid diet. My vomiting continues even when I’m successfully managing my motility issues, so in my opinion they’re barking up the wrong tree. On top of that, motility tests won’t show anything if I take them while on a liquid diet (or if they require taking lots of laxatives). Solid food is what causes my system to become sluggish, so I would have to have to make myself sick days in advance before the test in an effort to keep down enough solid food to trigger my gastroparesis and sluggish gut. If I make a mistake I might simply end up with diarrhea instead.
I’m also stressed, because I already feel like a social outcast, and the freaky tube coming out of my nose probably won’t help my chances of making friends. At the same time, I really don’t want another G-tube, but I don’t know how long I’ll be able to tolerate the NG until I start bleeding again. Right now I’m using tiny 8 Fr tubes, which are nice because they are more comfortable and less irritating… the downside is they are not weighted, so if I decided to have something by mouth there is a good chance I will vomit the tube along with the food. Its beyond frustrating to have to pull the tube out and put it back in, and the more I do it the more irritated my nose and throat will be. The connecter on the end of the tube is also very small and flimsy and prone to leaking. Lastly, I’m afraid to use the tube during church because the pump we were given makes these constant squeaking/groaning noises and there’s always the risk of the alarm accidentally going off in the middle of service.
All my usual fears and worries are there too in the back of my mind. I wish I could just learn to relax, and trust God, and “stay positive.” I’m just not hardwired that way. I always expect and brace myself for the worst. I’m like the disciples on the boat when it began to storm:

Mark 4: 35-41 NKJV

35 On the same day, when evening had come, He said to them, “Let us cross over to the other side.” 36 Now when they had left the multitude, they took Him along in the boat as He was. And other little boats were also with Him. 37 And a great windstorm arose, and the waves beat into the boat, so that it was already filling. 38 But He was in the stern, asleep on a pillow. And they awoke Him and said to Him, “Teacher, do You not care that we are perishing?”

39 Then He arose and rebuked the wind, and said to the sea, “Peace, be still!” And the wind ceased and there was a great calm. 40 But He said to them, “Why are you so fearful? How is it that you have no faith?” 41 And they feared exceedingly, and said to one another, “Who can this be, that even the wind and the sea obey Him!”

I pretty much live my life in panic mode, because its always one storm after another. It constantly feels like if God saves me from one thing, there are 50 more things ready to swallow me whole.

I would love to just dive into a king sized bar of dark chocolate right now. Of course if I could do that I wouldn’t be in this mess now would I?