April 8th

Amount of sleep:
~6.5 hours. not restful though with lots of dreams

Diet:
- Breakfast: two waffles with butter, 2.5 cups water
- Dinner: steak with oven roasted potatoes, 4 cups water
- Snack 1: handful hershey eggs, 3 more cups water
- Snack 2: sour cream and cheddar chips, 1 cup dr. pepper

Exercise/activities:
- full house cleaning (~60 minutes)

P.O.T.S. symptoms experienced:
so far: heartburn, weakness, extreme fatigue, headache, cold extremities, pounding heart, short of breath

Misc:
cyst in my wrist is swollen

April 7th

Amount of sleep:
~ 6 hours in two 3 hour spurts. (I had to take my mom to the airport at 5)

Diet:
- Lunch: big bowl of beef stew (beef, baby corn, mushrooms, potatoes), glass of Dr. Pepper
- Snack 1: sour cream and cheddar chips, 3 cups water
- Dinner: steak hamburger patty, mac and cheese, glass dr. pepper
- Snack 2: hershey eggs, 3 cups water
- More water (3 more cups)

Exercise/activities:
- short walks with both of my dogs (~30minutes total)
- weeded/raked the backyard gardens (60+ minutes)
- planted some saplings











P.O.T.S. symptoms experienced:
so far: nausea, heartburn, stomach upset (upper and lower), blood pooling, cold extremities, disorientation

Cardiologist vs. POTS Specialist

As of today, I’ve seen both a cardiologist and a POTS specialist. Eventually, I will have to decide between them. Here’s a brief breakdown so far…

Cardiologist

Course of action:

• wants to try Midodrine, bloodwork, another stress test and a heart echo.

Pros:

• Seemed knowledgeable and caring. Listened to my concerns and actually believed me.

Cons:

• Extremely long wait time/ office disorganized
• Has yet to answer a phone call. I’ve called his office twice to ask questions, and haven’t had a call returned yet. On top of the wait time, I really don’t like this

POTS Specialist

Course of Action:

• Wants to try Atenolol, use compression stockings, bloodwork and stomach emptying test for Gastroparesis (GP)

Pros:

• She’s done a lot of research and clinical trials on POTS. She consults on drug side effects studies. She’s even been an expert witness on the topic.
• was on time and prepared. (huge plus)

Cons:

• None that I can see yet. Although I haven’t tried to call with a question or anything like that.

How I’m feeling so far:

I’m not entirely sure. I had high hopes for the cardiologist, but his office doesn’t return phone calls, nor is anyone ever in the office. I’m really angry about that. All I want to know is if I should get my testing done before I try the new meds. Yet they can’t return that call. It really upsets me because I should be able to get an answer on that. It totally undermines his credibility and my faith in him.

My only concern is that maybe something is wrong with my heart or cardiovascular system…and that, by walking away, I would never know. I hate to be a hypochondriac, but I’ve come this far and had so many tests already…I’m wondering if I should at least have the stress test/echo and find out.

What I’m debating doing is getting all the bloodwork done, then possibly having the stress test/echo done anyways, and the stomach emptying test. I can see how they all turn out, and then make my decision.

Today's the day...

I saw the POTS specialist this afternoon and it was interesting to say the least.

She went over the results of all my previous testing, especially my tilt table test, and also went over my symptoms. She said that everything was definitely consistent with POTS.
_{(Which I knew from my own research, but it’s still nice to have it definitively confirmed.)}

She gave me a neurological exam, which I performed pretty well at, and she doesn’t think any brain scans are necessary at the moment.

One test she is sending me for (outside of bloodwork) is a stomach emptying test. You eat something with radioactive stuff mixed in, and they take pictures to see how long it takes to move through, and out of, your stomach. She thinks I may have a condition called Gastroparesis that’s causing my nausea every time I eat.

Gastroparesis is a partial paralysis of the stomach that makes emptying it relatively difficult. Symptoms (that I have that she feels are consistent with GP) are: nausea, feeling full after only a few bites, weight loss, abdomen spasms, heartburn, GERD,and lack of appetite.

GP is most common with autonomic neuropathy, a type of which is POTS. She said there’s a good medication for it that can also help with the symptoms of POTS, which would be lovely, because nausea is one of my most debilitating symptoms. It’s also one of the reasons that I can’t gain weight.

She also disagrees with the cardiologist about taking Midodrine. She says it’s an option, but she wouldn’t prescribe it at this stage in the game. She would prefer that I try Atenolol (a beta blocker) instead. Starting with half of the smallest dose.

She’s also like me to try compression stockings for the blood pooling.

Amount of sleep:
~8 hours. not restful though with lots of dreams

Diet:
- Brunch: two waffles with butter, chocolate milk (woke up with awful heartburn/upset stomach again. I'm not sure why...so I ate later, around 11:30am)
- Dinner: roast chicken legs with plain pasta
- Snack 1: sour cream and cheddar chips, 3 cups water
- Snack 2: handful hershey eggs, 2 cups water

Exercise/activities:
- tried to do 'beginners' Pilates this morning but just couldn't make it through.

P.O.T.S. symptoms experienced:
so far: nausea, heartburn, stomach upset (upper and lower), weakness, extreme fatigue, headache, pounding chest, blood pooling, cold extremities

Schedule Change

Instead of going to the POTS specialist in two weeks, I'm going tomorrow! They had a cancellation and called to ask me if I'd like to take it, and I jumped on it.

Amount of sleep:
~7 hours...badly fragmented though, with horrible nightmares.

Diet:
- Breakfast: small glass of milk. (wasn't feeling great when I got up...probably the weather shift)
- Lunch: steak patty, mac and cheese, glass of dr. pepper, some hershey eggs.
- Dinner: homemade pizzas with cheese, olive oil, olives, mushrooms...3 cups water
- Snack: sour cream and cheddar potato chips, 3 cups water

Exercise/activities:
- half yoga dvd. ~20 minutes worth
- went to the store (twice) and ran errands

P.O.T.S. symptoms experienced:
so far: dizziness, cold extremities, headache, nausea (with eating), lower stomach upset, fatigue, muscle aches, pounding heart, heart burn, memory lapses, restless legs

Ever onward

I've been away from this for a long time. Mostly because trying to get back on my feet after my surgery has been a longer process than I thought. The recurrent pains in my abdomen and groin aren't normal and my doctor feels there's nothing he can do about it, so I'm going back to the surgeon in less than two weeks.

In the meantime I've been doing a lot of debating in how I can make the best use of this blog. I think for now I'll add these things to my posts:

Amount of sleep:

Diet:

Heart rate a.m. :
laying down:
standing:

Exercise/activities:

P.O.T.S. symptoms experienced:

Heart rate p.m. :
laying down:
standing:

Misc/Life Stuff:

I'll be taking my blood pressure for the cardiologist twice a day (as you can see) and I'll start recording it when the monitor I've ordered comes in.

exhaustion

Last night, even though the doctors appointments went well, I was slightly put out. This road to find relief has been a long one and, to be honest, I’m tired.

I’m tired of seeing 50 doctors a year. I’m tired of the unbelievable cost it’s racked up. I have no savings anymore, and am barely surviving on unemployment. I’m incredibly grateful for it (although I’m not sure I deserve it) because without it I wouldn’t have even found POTS.

I’m tired of the poking and prodding and invasive procedures. I know they’re for my own good, which is why I keep allowing them, but I can’t ignore the toll they’re taking on my body. Colonoscopy, endoscopy, more bloodwork than blood in my body, sonograms, ultrasounds, probes into my stomach through my nose, probes to check my throat, probes to check my esophagus and throat…the list goes on and on. Now a heart monitor and buying a blood pressure machine and checking it several times a day.

I’m tired of choking down pills (something that’s extremely difficult for me because I have no motility in my esophagus) and now they’re going to add even more pills to the mix. Plus they’re also expensive to me right now. $50 in pills a month is hard to come up with when you can’t work.

I’m tired of the boring diet that is pretty much the only way I can function. The intolerances POTS has brought up have totally changed my life. I’m tired of the nausea and the bathroom issues.

I’m tired of being trapped in this cage of a body most days. Unable to even connect to my peers because they’re out drinking, are partying and in school, are working. Most of them are out doing what they want, whenever they want; even on a whim while I have to plan my days (foods, movements, activities) and carry them out, to the minute, days in advance just to be able to do something on the one day I want to.

I’m put out that this could be my life for the rest of my life.

Yes, I know, others have it much worse than I do. I know that. But it’s already been a long journey, and it feels like I’m just in the middle of it. I climbed the first mountain, and found POTS after 2+ years of testing.

Now, I’m at the base of yet another mountain; the most important one. This uphill climb is filled with more tests, more meds, more expenses and more doctors.

I know, in the end, it will hopefully have been worth fighting through; but what can I say? I’m tired.

Thankfully, I also suffer from tenacity and am not about to give up yet.