Long Time No See...

I haven't written in quite some time. I don't have much going on. I'm working hard and studying hard. I haven't worked this hard at anything in my life, it seems. I'm making it, though. I dropped one class this semester. I just wasn't able to take four classes. Three is much more manageable. I'm doing well in all of them and feel as if I have some breathing room.

I've been nauseous again for about two months. They think it is my iron levels. It's always something. The Endo did test my cortisol levels and those are doing really really well. So I'm not on the hydrocortisone and don't need to be. I will still be monitored for Vit D levels and my iron. That's not too bad.

We are about to go on vacation to Puerto Rico. We leave next Saturday. I'm so excited!! We haven't been on vacation which didn't involve going to a hospital in 5 years. We deserve this. I don't even know if we will remember how to completely relax! (Well, except for the small amount of school I'll have to keep up with.)

I'm kind of nervous about going on vacation, though. Last time I went to Puerto Rico I walked a lot. I'm not sure I'll be able to do as much physically as I did before. I know I will just have to take things slower and not be hard on myself. This also means not taking my good camera. I will be missing it the whole time!!!! But I just can't haul it around while I'm trying to just breath and walk at the same time. I know it's better for me to make it and not be suffering than it is to have the best photos ever. I'll live without the photos. I'll just have to take some ordinary ones :)

Coming off Hydrocortisone

My doctors have been stepping me down off my hydrocortisone for several weeks. I'm now only taking 5mg twice a week. I've been getting slightly nauseous, but no headaches. The Endo said if I feel any symptoms at all to take some. I'm waiting to see how it does. It's a balance between taking enough not to crash your system, but not taking so much you aren't allowing your adrenal gland to wake up. If it keeps up this week, I'll go back to taking 5mg every other day and see if that makes it better. At the very least, I can't take it for two days before my testing in a couple of weeks. I also have to keep an eye on my weight. If it starts dropping I have to take more (if I weren't afraid of dying I'd let this one slide for about 20 lbs).

I really don't have time for all this testing. It's the week of my finals and all my projects are due on top of that.  I'm going to be studying and finishing projects the whole time I'm in JAX. Someone didn't think that through well :)

I'm also stressed about classes next semester. The university informed me my probation status will not be removed until the end of this semester. Too late to register for my next classes. I can't apply as a Web Learner until I am off probation. I don't get first priority to register for the online classes unless I'm a Web Learner. UGH! I need FOUR classes to be done with my lower division requirements before I can apply to the Business School for my upper division. So I can either wait until next semester once I'm off probation to register early for Spring and get all my classes, or I can take whatever I can get into this semester AND if it isn't all four of the classes I need, have to take the remainder of those classes in the Spring before I can apply to the Business School (unless they will allow me an override for the 3000 level classes prior to applying). I'm going to try and see what I can get into. I just don't want to wait, but also don't want to pay tuition for not a full load. Then again, am I capable of taking a full load while working?? I don't know. Tuition keeps going up and I'm not sure how I'm going to pay for it. I don't think my funding source was planning on it costing so much. {Head banging desk}

I've been gluten free for a month now. I went off of it this weekend more because we went to a cookout after a very long day and I was starving. I haven't been diagnosed with anything, just trying it out for joint pain and POTS stuff. Anyway, I wasn't sure it was doing any good until I went off. I am in major pain and had GI issues pop up again. Going back on tomorrow and not coming off again. This sucks! 

Day Four of Gluten Free

So, I can tell you that I don't feel any different so far. To be fair, I'm not expecting to yet. I imagine it takes a while to lower your inflammation from eating gluten all these years. And just like medicine, it may take a while to take affect.

Knock on wood, I'm going on two weeks no crashes. Go me! Maybe I'm doing okay with resting enough. I've also been walking some to keep from doing to 90mph, 10mph, 90mph, 10mph cycle. I'm trying to always stay at 50mph. I do this by reducing stress and taking breaks.

I found a good blog noting some of the gluten free breads today:
http://blog.julesglutenfree.com/2011/04/3-days-of-expo-in-6-posts-a-rundown-of-the-latest-greatest-in-gf-at-natural-products-expo-west-5-pre-made-gluten-free-breads/

I'm worried about my trip to the Bahamas. Not because I can't find gluten free foods (I could just do no carbs) but because I'm concerned I may not be able to afford it. It's very expensive in the Bahamas to eat. I've been trying to research it. Here's what I've found:
http://wayoftheceliactraveler.blogspot.com/2011/01/taste-of-paradise.html

The Wheat Belly

Everywhere I turn on the POTS facebook pages or blogs I see people telling me to go gluten free. It was even in the information I read about Adrenal Glands. After the thousandth message I figured it must be coming close to a sign from above. I'm going to try it out.

I actually committed to it 5 days ago. So far, I haven't made it one full day. I'm committed and really really want to, but gluten is everywhere. I'm reading The Wheat Belly by William R. Davis. It's very good at explaining it so us scientific minded folk will believe it and not think it's just some new fad soon to fade. He explains that millions of years of screwing with wheat's genetic makeup have yielded something far different that what wheat originally looked like. We've made the stalk shorter to help support the larger, shaft-less grain. We've made something all together different entirely. On top of that, we add yeast to make it rise.

That's about as far as I have gotten, but like it already. Here's a sample of what we had for dinner:

Ginger Glazed Mahi Mahi

Ingredients

• 3 tablespoons honey
• 3 tablespoons soy sauce
• 3 tablespoons balsamic vinegar
• 1 teaspoon grated fresh ginger root
• 1 clove garlic, crushed or to taste
• 2 teaspoons olive oil
• 4 (6 ounce) mahi mahi fillets
• salt and pepper to taste
• 1 tablespoon vegetable oil

Directions

1. In a shallow glass dish, stir together the honey, soy sauce, balsamic vinegar, ginger, garlic and olive oil. Season fish fillets with salt and pepper, and place them into the dish. If the fillets have skin on them, place them skin side down. Cover, and refrigerate for 20 minutes to marinate.
2. Heat vegetable oil in a large skillet over medium-high heat. Remove fish from the dish, and reserve marinade. Fry fish for 4 to 6 minutes on each side, turning only once, until fish flakes easily with a fork. Remove fillets to a serving platter and keep warm.
3. Pour reserved marinade into the skillet, and heat over medium heat until the mixture reduces to a glaze consistently. Spoon glaze over fish, and serve immediately.

And here is Bob's Green Drink:

He says you can omit the flax and hemp seeds if you want a lower cal version.

MY Green Drink (398 calories)

Add all ingredients (listed below) to a blender and blend until combined.

Supplements (218 calories)

• • 1 TBSP Ground Flax Seed (40 calories)
  • 1 ½ TBSP Hemp Seed  (80 calories)
  • 1 TBSP Dulse Flakes  (8 calories)
  • 2 tsp Maca Powder  (40 calories)
  • 2 TBSP Protein Powder (50 calories)

Fruits & Veggies (180 calories)

• • 1 Cup Fresh Kale (30 calories)
  • 1 Cup Frozen Spinach (30 calories)
  • 1/2 Cup Blueberries (35 calories)
  • ½ Small Banana (40 calories)
  • 1/2 Cup Frozen Pineapple (45 calories)
  • 20 oz. H20

Great Video

I have been watching these videos from an EDS conference. This is a spine surgeon. He is talking about C1 C2 instability in EDS patients. This is great because he ties in kyphosis and all my symptoms of headache and dizziness. I've discovered in the last two weeks I am dizzy when I turn my head to the left! That's why I noticed it driving because I would check my blind spot!!!

http://vimeo.com/35766087 

Heading to Mayo JAX

To start, I had another minor crash today. I woke up around 7 am with severe stomach cramps. This kept me up until I started having the extreme fatigue around 10am. We had planned on going to church then heading to Florida. Instead, I took extra hydrocortisone and went to bed. I slept until 1 and then got up and packed the car.

I'm having to have all the testing repeated at Mayo. Not sure why other than he wants to appear to be doing something since I wrote that email, or he wants to see if anything has changed in 4 months. I'm reading up on the QSART now. It is an autonomic test to test the nerves and sweat output. I find it interesting, though. The test comes back abnormal if you don't sweat. Well, I had told him I was sweating waaaaay more than normal. Also, most people first present with burning pain in their feet. I don't have that. At all. So why would he have recommended this test? And last time it came back normal. Is it just a test he knows how to order so he does?

I really think I have EDS and he's on the wrong track completely. I think THIS VIDEO makes a lot more sense for my case. I need to study it a lot more before I see my doc on the 19th. I know I'm going to have to plead my own case. 

Well That Didn't Work

Last Thursday, I had a friend mention that I seemed very "off." This bothered me. I know I've been having a very hard time coming up with words. I've had tingling in my face and MAJOR symptoms POTS related. I got to where I couldn't bend over at all without getting sick within seconds. I felt almost manic. I was feeling much worse, but I didn't think others could tell.

Because I'm on so many of the epilepsy pages for my husband, I saw someone post they were having horrible side effects from Topomax. She said she was having a really hard time coming up with words. That did it! I had been put on Topomax the beginning of January for the headaches. I didn't really want to go on a seizure med just for headaches. Especially when I feel they are more related to cortisol than the POTS crap. My husband has been on so may and they all have horrible side effects. Unless they are for seizures, I'm not sure I'm okay with prescribing them. So I decided to stop in that night. I took all the pills out of my organizer and haven't looked back.

Today is the first day I haven't had at least a mild headache. It's been the same as it was before. Mild headache and stiff/sore neck. But that's better than feeling like you are going insane, I guess. My capacity to type has returned. I'm able to think clearly. My heart rate hasn't been racing quite so high. I've also not had the weird tiredness in my arms and jaw. It can sometimes take those meds a while to fully leave one's system. I'll report back in a few days.

I'm still very upset with my POTS doctor, though. I'm going to write it here in case anyone googles this. Juan Figueroa at Mayo Jacksonville. I was calling and telling him all these symptoms and he suggested I see my General Practitioner. Crock!! As a neurologist, he should have known I was having a reaction, or at least a possible reaction, to the medication he put me on. I'm disappointed at how he blew me off. I'm going to definitely tell him this when I see him on March 19th.

He did schedule me to have all the testing repeated. I almost want to go back on the Topomax before I go down there so he can see what it did to me. I want it to completely screw with all my tests. What an ass. I would do this if I weren't scared the med could do permanent damage. Ugh!

CRASHED HARD

So on 02/11/2012  I crashed pretty hard. I felt it coming. My vision started going first. It got blurry and going all tunnel vision around the edges. Problem was I was driving and was 2 hours from home. I took 40 mg hydrocortisone right away since I had been backing off on it I wanted to make sure I wasn't crashing on it. And because I didn't know what else to do. Then I started feeling really heavy. I started feeling as if I were going to fall asleep. Fast. So I pulled over.

I told my husband (who can't drive because of his epilepsy) that I just needed to wait a minute for my hydrocortisone to kick in. Then apparently I went to sleep for about 15 minutes. I woke up and drove across the street to a gas station. I got out of the car to go get some sodium. This was very difficult. I could barely walk. My legs were very weak. But I knew I needed to get my blood moving. So I went inside and bought a bad of chips and a Gatorade. I sat and ate some chips then felt a little better. We got back on the road.

About an hour later I felt back to where I was when I started on the trip. So it was what I would classify as a crash. I would also say it was just like the ones I had when I first started going on hydrocortisone. So I don't think it is the POTS. It was like the extreme fatigue I would feel when I would have to go lay down when they switched my meds in Boston, too. I called the Endo today and I'm going to seriously push on his end for a rescue steroid that can be given by someone else. Because Jason might have had to have given that to me and he couldn't have given me a pill. I might have thought it was the POTS if I hadn't felt it before when I was going through the hydro phases in the summer.

This is what I wrote on the POTS page on Facebook:
I hate having no cortisol and POTS. It makes it very confusing as to which is causing the "crashes" and how to treat it. And which doctor to call. They are very similar. Each doctor responds with, "Well, did you call your other doctor?" Ugh! I have to treat the dysautonomia to make the correct signals go to the pituitary for the pituitary to send the correct signal to the adrenals to produce the cortisol so my body can function. But in the mean time, I have to artificially stimulate my cortisol by taking steroids but not too much steroids because that could permanently damage my adrenals which aren't damaged they just aren't receiving the signals. But 5mg too little makes me crash and 5mg too much makes me nauseous and have a headache and I never know from minute to minute what that line is because it depends on my period and what level of activity I'm doing and how much I've eaten and the direction the wind is blowing. 

Feeling Well

So four days of the decreased hydrocortisone and I'm feeling much better. I'm not sleeping extremely well, but I'd rather sleep light than sleep way too much. I need to contact my Endo and let them know of the new changes and have my levels tested. It seems my energy levels are fine. I can tell the last couple of days towards the end of the day my knees have been very sore. So I might need to take an extra 5mg at lunch. But I'm excited to decrease my hydrocortisone for the first time.

I also heard from Mayo. It was the assistant to my doctor. She was responding for him. He is not allow to communicate to patients by email (in response to my nasty gram I sent him). Wanted to know if I still have my unexplained cough (yes)? Wanted to know why I have my concerns (you don't return calls and don't seem to really care about me as a patient. I was feeling horrible. I was extremely nauseous, headaches and dizzy. My heart rate was really high but I didn't know what to do about it because I couldn't get an appointment or a doctor to call or answer.) Well you do have an appointment it's on....and so basically nothing. Whatever. I'm going to go. But from what I've been able to gather from the facebook sites and reading on my own (and changing my cortisol) I think I can manage it on my own. I do want to ask to see the heart doctor, though. The tachycardia when I'm laying down is worse and it is bothersome. I'd like for that to go away. I also told her about my arms being tired. She said, well that can happen when you start a new activity (meaning my swimming). And by tired I mean when I shampoo my hair, drive, hold a book, etc. They are just tired. Even typing now. They feel worn out. It's weird.

That's all for now.

Cortisol

I forgot to take my meds right when I got up yesterday and noticed I wasn't nauseous. So I made a scientific decicision to try and see if cutting back on my cortisone might actually work. I only tool 10 mg yesterday morning and 5 mg yesterday night. I was a little nauseous this morning after my shower, but then was fine. I took 10 mg again and haven't taken anymore until I take 5 mg tonight. Wow! This is the smallest amount I've taken in 7 months. So yesterday and today have gone well, anyway. Let's see how it goes. I have been getting "worse" since being put on the hydrocortisone. Now they say that I was on a downward spiral already...We'll see. Of I start feeling better I'll go in and have my levels checked to see what they show.

Surging

Surging is the new word for today. My heart feels like its racing. I'm shaking. I'm really really nauseous. Andeverythingfeelsjustlikethiswhenitisgoingoninsidemyhead. I keep panicking that I've forgotten something. Something I'm supposed to be doing or left somewhere. It's crazy. Like that feeling when you wake up all of a sudden in a panic that you are late but then realize you aren't? That's how I've been feeling about 20 times a day or more the last few days. I'm so ready for it to stop. I keep trying to calm myself down. All I know to do is make a list and check it over and over and reassure myself that I'm okay. I'm lying in bed with an ice pack on my chest right now.

Spoon Theory by Christine Miserandino

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

This is a link to a great story about what it's like to be sick but not look sick. It's hard for me to link on my iPad, so you'll have to copy the address to your browser. It's worth the extra second.

Swimming day one

I drove 6 hours twice in three days and and then crashed. I've also been really nauseous lately. I think it's my cortisol. On top of the other stuff, I'm not producing cortisol. So I'm supposed to be on 20 mg 2x a day of hydrocortisone. I've really only been doing 20 in the a.m. and 5 at bedtime. So I probably need to add in another 10-15 mg in the afternoon. I just hate taking huge amounts of steroids. But I also hate being nauseous.

I also decided I need to start my exercise routine. Everyone mentions how important it is. I normally hit the gym hard, but it virtually impossible when just standing raises my pulse rate to 120. Swimming seems like a great alternative.

It went well. I had to go super slow. The slightest attempt to really swim laps wore me out. So I did really really really slow breast strokes and back strokes. Just anything to get moving I think is a good start. At least that's what I'm going to keep telling myself :)

I also purchased a new hear rate monitor. I researched this to death. I purchased a low end puma brand which has worked okay but the chest part drove me nutz. It was a hard band. Girls have boobs. The monitor has to be worn under the bra strap. All that in one area can be too much. And I couldn't wear it in the water. It was $65 from amazon.

I purchased the polar ft4 today from a local store. It was $100 which is the same price as amazon. It can be worn in water. The band is some kind of cloth where the computer snaps on. The watch part takes about ten minutes to set up with your weight, age, time, date, etc. I also modified the target zones because I can't really reach 85% of my max right now. I'd be passing out or worse. I wanted it to warn me way before I reach that.

I also picked up some body glide anti-chafe to help since I have to wear it a little more than most people. It comes in a half size which is great for my purse.

So my first thought are... I'm really surprised at how little I can do. I was running this time last year. Not well, but I was doing it. Now I can barely swim. But I do feel better tonight after doing it. I'll go back tomorrow!

Why Eight Neon Crayons?

When I was young I had a pack of crayons which simply read "eight neon crayons." I always thought this would make the coolest band name. While I may never be in a band, I think it's a great name for this blog.

Crayons are so versatile. You can color with them straight or sideways. You can bear down or color light. You can color in the lines or scribble as you please. Even after they break you can melt them down and make cool art or new crayons!

And no matter how bad your day is going or how filled with anxiety you are, you can always grab a coloring book and crayons and be on your way to happiness.

Good link

http://www.potsrecovery.com/2010/05/what-is-hyperadrenergic-pots.html

Coughing and energy

So coughing has been a new and strange symptom. I've read where several people get this symptom, but,I can't find what they do for it. One doctor said to try cough medicine. Yeah,okay. It's not really a bronchial thing. I thing the reason must be from the buildup or conservation of blood around the heart/lungs.

It's been surprising to me to read about how affected people are with this disorder. Either mine is going to get much, much worse or I just don't think it's that bad. I have gotten significantly worse over the last year. Even progressively worse in the last eight months. But I can still get up and work a job. That doesn't mean I feel great but I can do it. Things I can't do...I just learned I can't clean the shower without getting sick. I was trying to clean it while in the shower (so maybe over heated) and bent over and I got super sick in a short amount of time. But I'm not a maid so no biggie.

I'm going to drive in the car for six hour tomorrow for the first time since being diagnosed. We'll see how that goes. The last few times my ankles have ballooned up like crazy. Now I have the old lady stockings, though so maybe that won't happen.

January 22, 2012

I have just recently been diagnosed with Hyperadrenergic Postural Orthostatic Tachycardia Syndrome with Dysautonomia. Do not count me as an expert. I am completely learning each day what that day will bring as far as symptoms. Because the last 8 months have really been such a drastic downhill spiral, I'm going to try to keep an online journal. I'm normally a very type A personality (ignoring the thought even now as to whether or not that has a hyphen) which has made the brain fog very difficult. I've never been a good journal-er. I'm overly critical and try to write too much. I can tell a difference in my typing and handwriting just in the last couple of weeks now so I feel the computer may be my best route.

What really sucks is I had planned on going back to college this summer. I never really understood before why it was so hard for me before. I am extremely smart. I'm a hard worker when I want to be. I even graduated high school early. Then it just seemed to get harder and harder. I couldn't ever get up before noon. When I would tell people that they would tell me I just needed to get on a schedule. Ha! Well, I would force myself up only to be passing out in class or driving. It got scary several times. I even tried to arrange my schedule so I only took night classes. But that's when all the other kids were hanging out and having fun. So then who wants to go to class then? So I scratched and clawed my way through 6 years of college with 140 hours and no degree. Quite a feat, really. Now I want to finish up and I finally have answers, but I'm getting worse!

On top of all that, I have a husband with unexplained adult onset epilepsy. It isn't controlled with medication. Over the last 6 years we have been through countless doctors for him searching for answers. The last two years we have been through 5 brain surgeries. And now they appear to be back. It's taking a huge toll on me, our finances, our marriage, him, his job, really everything.

So this journal will be a no pressure...just as I can get to it journal.