The McComb's Plan...What it's Done

About 2 months ago at this rate, I went on the McComb's Diet Plan. I mentioned it in one of my posts in November. You can read about the plan on the doctor's own website. I am not taking his supplements nor doing the sweating protocol on his website. Just the diet. Wanted to make sure that was clear...hehe

What has it done?

Eliminating sugar has been tough, but I have been very successful with it and am loving the results. I dropped about 10-13 pounds depending upon the time of day I weigh myself. This was really unexpected and not why I even did the diet in the first place. I do miss my Chai Tea Lattes at Starbucks, but the benefits of the diet far outweigh any emotional pleasure I'd get from drinking a Chai. haha

Aside from the weight loss, my skin is looking really good. Over the past 3-4 years my skin has been way more prone to break outs for some reason. Especially on my forehead and near the temples. Well I can say without any doubt that this diet has really helped my skin. I still have terrible problems with blackheads, but at least the pimples are gone.

My heart is no different. Sorry no cure for POTS here! haha The first week, I was having really strong sugar cravings and the dizziness (white outs) upon standing seemed to be worse. However that has normalized now and I'm not getting that anymore.

The mid afternoon crashes or need to take a nap is now gone. It took at least 2-3 weeks on the diet for this to occur, but I no longer need to take a nap mid-day. I think this has to do with blood sugar, but am really not all that sure.

This diet is very similar to how I was eating when I went on Dr. Mercola's Carbo Nutritional Diet many years ago. Interestingly I felt pretty good back then but the POTS was kicking my butt. I've also tried to lower my salt intake a bit just to see. My legs, especially the calves and ankles still seem puffy to me.

Will Likely Continue On

I plan to continue eating like this, but might allow myself to have 1 treat a week. I can let that be whatever I want, but it can only be 1. However I will certainly put an end to that if I start to notice problems.

What I Found Out...

I have found out that dairy is a major issue for me. My husband experimented making his own kefir and yogurt. Both of them made me so ill that I realize I must be allergic to the actual milk protein (Casein) rather than just being lactose intolerant. There isn't supposed to be any lactose in either of those (from what I've read), so it makes little sense that in 4-5 hours after ingesting, I get the typical bloating, gas and intense stomach pain. For 3 days after, I was passing pale stools that was likely undigested milk proteins and fats. Sorry for the details, but something is not right and that was a huge wake up call for me. No more dairy!

We will see how this goes.

In regards to my labs, I haven't heard anything. My doctor may be holding them until we see him in office. Money is tight so I have no idea when that will be at this rate.

What I do in my Spare Time!

I wanted to make a happy post today on my blog! What do I do in my spare time?

Well I quite honestly I lead a pretty sedentary lifestyle. Every morning I look forward to my morning cup of coffee. As I get older, I am finding that I am actually developing a palate for coffee. I am starting to become a coffee snob where I only use a Coffee Press these days to make coffee!

I absolutely love my Bodum Coffee Press and don't know what I'd do without it. My mornings would be quite sad. Even though I really like coffee, making it can be annoying. One morning I made the comment, "I wish there was a machine that made coffee". My husband thought that was the most hilarious thing because DUH there's tons of machines that make coffee. LOL What I really meant was, I wish there was a robot that could make me coffee in the coffee press. That line has now become a family joke. "Man I really wish there was a machine that made coffee". I'm glad I entertain my family.

The one other thing that I love even more than coffee is singing. If I tallied up how much I sing every day it's likely pushing 8 hours. I am not kidding at all and my poor husband has to hear it all the time. haha My mother was always singing so I think that kind of stuck with me. She would listen to various singers like Bette Midler and Celine Dion. I'm sure there were others, but that's all I can remember. My family went to church every Saturday night and I started to realize that I had a really good singing voice. However with my lack of self-confidence I had been afraid to let anyone know about it and sort of hid it. A few months ago, I decided to record myself to see if I sound good on tape. To my surprise I think I sound pretty darn good for having very little official vocal training.

I really wish to write some music and at least put it out on the internet for people to download. Singing makes me feel so good. It's like all of my problems go away and it is a major destressing tool I use. If you are interested, I have put up a few covers on Youtube. Let me know what you think--if you hate it that's ok. There is always room for improvement with singing. My trills, slurs, vibrato and hitting high notes could be much improved and I hope to take vocal lessons again one day. My last vocal teacher was pretty terrible and I sang better than her.

Getting some Labs Done

Well today I went in to get some labs done before we make the journey to see the doctor. We travel 6 hours to see a doctor that knows what he is talking about and in the very least listens to my concerns. Does he have the answers to everything? Absolutely not. He won't even touch the POTS issue, but at least I have him there for hydrocortisone, florinef and really anything else hormone related.

This time I asked him to test some basic things and a few not so basic things that I am interested in. I told him not to even bother with my thyroid because I have NO intentions of taking thyroid meds regardless of my results.

I got the following tested:

Fasting insulin
CMP (this is for electrolytes, glucose etc)
CBC with diff.
Ferritin
Vitamin D
Total Testosterone
Free Testosterone
Antiparietal cells antibodies test
Intrinsic Factor Blocking Antibody, Serum
Urine Methylmalonic Acid

I wanted to check my fasting insulin again because the doctor in Michigan checked it and it was kind of high. CMP is good to check my electrolytes and other random things. I haven't had a CBC checked for at least a year, so this is long overdue. I don't expect to see anything out of the ordinary but it is important to spot check.

Ferritin and Vitamin D are both going to be awful. The doctor threw those ones in on his own. I expect my ferritin to be around 20 and my vitamin D to be about the same. Not good, but I hate taking those as it makes me feel toxic.

Total Testosterone and Free Testosterone was something that I added in. Since I'm taking DHEA, I wanted to make sure it's not too much. I don't think it is but I think it is important to verify this with labs to be safe.

The last 3 tests are all for B12 deficiency and pernicious anemia. I wanted to finally put this PA idea to rest. Most who have PA will have either one of those antibodies, so we will see. I also got the urine MMA checked to see if this correlates with the MMA test that Genova Diagnostics did in the NutrEval test.

I don't know if I'll get the results to these before we see him, but I might email the office manager and ask her to send them so I can look them over before we come in. This way I can have any questions ready. :)

Just a Reminder

I just wanted to remind people that the information on my blog are the personal experiences I've had dealing with my health issues. I also discuss things I've done to try to overcome them. This is not meant to be medical advice. Even if we have similar symptoms, you need to discuss everything with a doctor. Adrenal insufficiency is a serious condition that needs to be followed by a professional. I'm just some geeky blog writer that likes to complain A LOT.

Any information you gather from this blog should be taken to your doctors to discuss. I have a doctor that I work with and so should you!


-Birdlady

I'm still here

Just wanted to check in and say that I'm doing well. The weather has cooled down so I'm just enjoying life at the moment. I've been working a lot, like 16 hours day for my husband and his business. Things are good though! Sure I feel my heart rates are up, but with it being cooler I'm like 75% better. I don't have the shortness of breath or the "I feel like I'm dying" feeling.

I always forget that fall/winter I am actually somewhat normal feeling. :)

Here's a quick update on what I've been doing though. I started following the McComb's Diet plan about 3-4 weeks ago which is supposed to be for candida. You are probably think...OMG has Birdlady lost her mind!? Yes I am doing a candida diet even though I've made fun of them before haha. You can read about the diet at the doctor's own website, which is much different than most "candida" diets. I realize that I was mostly following the plan any way but had to cut out a few more things (all sugar, all dairy, all nuts).

At first, I really didn't want to do it because I knew I'd have to be on my feet more to cook every meal. You also have to get rid of butter which I've never done before. It's really hard to eat some foods without butter like squash, potatoes, rice etc. In addition to this diet, I've also stopped supping with salt. I lost 4 pounds in a week. I'm so sick of POTS patients being told to use salt like it's even doing a damn thing for us? DUMB!

In addition to the diet, I am also taking THorne Research Formula SF722 which is 10-Undecenoic Acid. I take 5 Gelcaps 3 times a day away from food. I have no idea if it's doing anything, but I'm just going to stick with it.

Overall I've lost 7 pounds now. I am absolutely LOVING it! I am finally back in the 120's which I haven't seen for a long time now. Now if I could get my heart to chill out when I try to do leg exercises, I'd be soo happy.../sigh I still cannot exercise and I have to keep myself cool at all times. If I am going out to a store, I wear tank tops underneath my coat so I can cool down fast if I start to overheat. So far this has been working really well. Some days I just wear shorts around the house to stay as cold as possible.

This post is all over the place, but I just wanted to let everyone know I'm doing well!

A little rant...

I frequent a lot of different "health" boards where people share their experiences and lab work. Most of these forums have to do with adrenal and thyroid issues and over time I've come to the realization that they are all insane. Yes insane.

There is a growing group of people who are starting to spread these twisted ideas into other forums with nothing to back up what they say. They are giving people such horrific advice I actually want to vomit. Most of the time I seriously HAVE to comment or I fear for this person's well being. I have become the disenchanted voice on a lot of these forums, but for good reason. All of their advice did not work for me, so when I see people regurgitating the same bull shit over and over again it makes me very angry. The very people giving advice are sick. Can someone explain to me how that even makes sense? Why would you ask advice from someone who isn't feeling better and is posting their own questions to the group?

I know that these groups mean well, but I think they need to be more careful on what is being said. There is a fine line between "giving your own personal experience" and down right telling people that their labs are wrong (even when they are within normal range) and saying they need to take potassium, sea salt and whatever else they decide your labs show.

Let me try to come up with some examples here. These labs are all made up numbers off the top of my head, but the concept behind it are real life stories.

Person #1 Doesn't have many symptoms of hypothyroidism, but wanted to see their levels.
TSH 1.5
FT3 3.6 (2.4-4.2)
FT4 1.4

They are told they could use thyroid because FT3 used to go up to 6. I have no idea where people come up with this stuff, but it's ridiculous. I think these are damn near perfect thyroid labs! I do agree that lab ranges are very inclusive, but if someone feels ok where they are don't tell them they need to be a certain arbitrary number to feel better.

Person #2 Male, complains about being depressed, anxiety and has POTS. I always take special interest in cases where someone states they have POTS. Typically they don't like to hear what I have to say though because everyone at these forums and groups have told them that HC is the magic bullet (when it really isn't in most cases).

Here's the general idea of labs.
ACTH Mid range of lab
Cortisol AM Top of range (but I know that this can be artificially high)
Aldosterone Low (We don't know if they salt fasted, so I throw this out)
Testosterone Very low
Vitamin D Very Low
Calcium Top of range
Saliva cortisol results High in morning, Drops off at noon then perfect the rest of day.

One group said this guy needed HC immediately and his aldosterone was awful. Since we don't know if he salt fasted, you can't make that assumption on the aldosterone. As for his cortisol levels, I have no idea why someone would think HC could even begin to help this person. There are no indications that he needs it at all. Not even close.

Then he is told to IMMEDIATELY get on vitamin D. Well dumb asses if you knew what the hell you were talking about, you'd know that this man needs to get his parathyroid hormone checked before doing that. Having a high calcium (anything above 10.0) with an extremely low vitamin D is TEXTBOOK presentation of hyperparathyroidism. Oh but these groups are so hell bent that everything is either thyroid or adrenal, they miss the obvious.

That's all the examples I feel like giving, but there's so many. I'm so sick of these adrenal people telling everyone that POTS is cured by florinef and HC. You are WRONG. Maybe there is a small percentage of people who have Addison's and this is true, but POTS is much more complex.

Not everything is adrenal and thyroid. There are other conditions and body parts ya know....And we don't know everything. If you think you know everything then you are in for a rude awakening. I learn something new every day. My thoughts on just about everything when I started this blog a few years ago has changed 180 degrees.

I think going on HC and thyroid for everything is the wrong direction. EVERYONE is told their levels are too low or not "optimal". I haven't seen a single person told they were OK...

I've Given Up

Well today I'm raising my HC dose again. My skin is tanning around my eyes, so that's enough for me. It looks like I got punched in the face. I guess it's HC for life at this point.

Ugh HC Weaning Isn't Going Well

It's been another 10 days or so and my body cannot adjust to this lower dose of HC. Even my husband is seeing it. He's now remembering all of these weird symptoms I had that disappeared on HC. Now they are coming back and we aren't forgetting any longer.

The past few weeks I've constantly had that "I'm just feeling weird" feeling. The ringing in my ears is getting worse. I have moments of complete hearing loss in my ears for a few minutes at a time. I've been feeling sick to my stomach, almost flu-like without actually vomiting though and I've been having crazy hot flashes and chills. I'm way more thirsty and my pee is clear. This is all from lowering my HC dose, which makes no sense to me. I am getting up in the middle of the night to pee too.

Yesterday and the day before I had to take more HC. I was sort of afraid that if I didn't I'd start going down the adrenal crisis path. Ugh. I just hate to admit defeat on this because I really don't want to have to take HC for the rest of my life. It's pretty frustrating.

Weaning Down HC: How it's Going

I can never remember what I even put on my blog these days. haha Well after a lot of pondering, I have decided to start weaning off the hydrocortisone. Yep...It's going to be bad. I know.

I've been dosing 15mg of HC at 7.5, 5, 2.5 for probably about 2-3 weeks now. It's odd because now I am noticing symptoms. I am feeling dehydrated for the first time in a year. Every once in a while if I am busy doing something I forget to drink, but I almost always have a drink of some type in my hand. I particularly like orange juice with a sprinkle of salt in it.

Well for the past 2-3 nights, I've been needing my water bottle next to the bed. Bad sign. I am also having night sweats and my fingers are swelling up like a balloon at night. I've noticed my face is looking puffier too. Last night at Wal-mart I was totally regretting not having a drink in the car with me. I used to be like that a long time ago...

Typically puffiness most would associate with over replacement. I can assure you that 15mg is no where near over replacement. I am struggling with nausea on a daily basis on this dose, but I am trying to see if I can even go any low. If I can't go any lower, then I think I can confirm true adrenal insufficiency rather than just fatigue.

I'm rather shocked at the weird symptoms I am getting. I never thought the thirstiness was fixed with the HC!

I'm giving this dose another 2-3 weeks and then I'll be going down to 12.5mg.

Got Labs: More Nothing

Considering how sick I am, I am always amazed at how nice things look on paper...lol

Creatine Kinase 55 (33-194)
Lactate 0.57 (.50-2.20)
Pyruvate 0.89 (0.30-1.50)
Copper 87 (70-175)
Ceruloplasmin 25.1 (18-53)

Wrist pain is fading

Just wanted to let everyone know the wrist pain is way way better. I don't need the stupid bandage anymore!

My "Go-to" for Ovarian, Uterine Pain

I'm not sure I ever documented this before on my blog. I think these health problems were LONG before I ever started blogging and it was so long ago that I just never really thought about it. I really have come a long way in my health journey.

This isn't the first time I've had uterine pain. I also have it about 5-6 years ago. Right around this time is when my trust in doctors started to rapidly fade away. I was having A LOT of uterine pain during intercourse and it was really causing me a lot of emotional distress. I sucked it up and finally decided to see a doctor about it. It's sort of an embarrassing problem to have, so I didn't want to tell anyone about it especially at age 20-21!

I went to see this gynecologist who was supposed to be "one of the best" in the area and after examining me, he decided that there was indeed something wrong and he wanted to do exploratory surgery to see if he could find anything. He wanted my permission to remove any endometriosis he saw during the surgery. Well I told him I would have to think about it. I don't take surgery of any type lightly. He also suggested, if I didn't want to do that, then I could be placed into early menopause at the lovely age of 21!! WOW I told him that wasn't even an option!! I knew nothing back then about the medical system and was completely dumbfounded that a doctor would even suggest this for someone my age who was newly married last year... I opted for the ultrasound which ultimately showed nothing, but I knew I wasn't crazy.

This is really when my search for alternative treatments started. The lack of answers from this doctor sent me down the "rabbit hole" as they say. After looking up the symptoms of uterine fibroids, I decided this was probably what was wrong. My husband found a supplement that was supposed to dissolve fibroid tumors and we ordered it. I figured I had nothing to lose right?

Within the first few days of taking it, I noticed pain in some of my joints and in areas where I suffered injuries years prior. When I was ~10 years old, I stepped on a toothpick which went straight into the heel of my foot. That exact foot and heel was hurting terrible while taking these supplements! I could not walk on it at all for an entire week. I thought it was really weird and didn't put 2 and 2 together until a few days went by. It turns out this supplement eats away fibrin from current or past injuries. I knew that it must be working, so I continued taking it.

Things started to get better. The uterine pain was lessening and lessening and lessening. Then after some time I realized I just wasn't having the pain any more at all!..This didn't happen overnight, but it also didn't take like 3 years either. I believe I finished off two 450 capsule bottles and then decided to stop taking them to see what would happen. Well nothing bad happened. The pain was gone and stayed away for a long time.

Well since the pain appears to be bad again, I figured I better get back on the supplement to see what happens. Thankfully we had an old bottle in the refrigerator! I took 5 pills right before bed and woke up with some wrist pain. I thought to myself, wow this is really odd. What the heck did I do to myself while I was sleeping? At first I thought I had slept on it weird. I took my next dose that morning, once again not thinking about the supplement. We were out at the store when it just hit me like a ton of bricks. OMG it's the pills making my wrist hurt!

Once again, just like the last time, the Vitalzym is making my joints hurt for some reason. It's obviously dissolving fibrin or some type of scar tissue. Not only is wrist hurting really really bad--I have it wrapped up in a bandage--but my left ankle bone started to hurt tonight too. haha You have no idea how incredibly painful writing this post has been and it makes me wonder if it's healing damage I've done from working on the computer all of these years.

I guess there's a new reformulated Vitalzym that's supposed to be even more potent. I still have the old stuff. If I can find the funds to buy the new stuff once this bottle runs out, I'll let you know how it works. I guess you don't have to take as many pills to get the same strength which is great. Right now I'm taking 15 pills a day, which can be hard to get down. If you are interested in Vitalzym just do a google search. Lots of online stores sell it, but I recommend doing some price checking! Some websites are WAY cheaper than others.

I'm curious to see how this works and I'll keep updating.

The PVC's are gone finally

Yesterday I noticed a drastic improvement in my heart rhythm and today it is about the same. I had about 5 or 6 PVC's compared to 1 every single minute or more! I don't know if it's because I stopped the B vitamins or if I added in some extra potassium and magnesium. I'm sure those didn't hurt at all, but I really think it was discontinuing the B's that did it. Now this time, I'm starting each B vitamin on their own and giving it a week to see what happens. That way I know RIGHT AWAY which vitamin(s) is causing the problems.

I might need to go to the gynecologist. Not to be too gross, but I was having a lot of mid-cycle pain this month which I haven't had for a while. I also noticed that my ovulation discharge was a weird orangy-red color which I've NEVER seen before. Now when I urinate or move a certain way I am getting ovary pain and making love to my husband was so painful I nearly threw up! Sorry if this is TMI, but I think it's important to document this. I've NEVER experienced pain like this before. I stood up and nearly collapsed. The nausea was soo bad, I had to just lay down for a while until it all passed. My abdomen is feeling kind of odd right now too...

I have no idea what is happening here. I always feel like something new is showing up.

I hate doctors

The PVC's are just not going away, so after a long internal debate I decided I should go to the local urgent care to make sure everything is ok. I just wanted to make sure that the rest of my heart rhythm was normal. I've been getting the PVC's just about every minute, which if you look online isn't THAT bad. But still, it is pretty darn uncomfortable especially when this is happening with HR's into the 140's!!

I get into the exam room and the nurse says they usually just send heart palpitation patients to the ER as they can't really do much here. "I'm not a doctor though, just telling you what normally ends up happening". I was thinking to myself. Well I didn't go to the ER because it's not to that point.

They do an EKG and of course it's always lying down and when you aren't symptomatic. I hate that. The EKG comes back completely normal which was great, but it didn't capture what I was experiencing. Literally 5 seconds after she printed that stupid sheet out I had like 2 or 3 PVC's upon sitting up! /sigh

The doctor comes in and he is insulting and patronizing me immediately. I'm thinking to myself, what did I do to deserve this type of treatment? I come in here because I wanted to make sure I wasn't in SVT or something and this guy is just lecturing me about stupid shit that doesn't even matter to me.

He tells me that I need to start working again because it's clear that I need more structure in my life and I need to be "part of a team". He said that when you don't work, your heart doesn't have anything to respond to so it starts to race at times when it shouldn't. If I had a job that would be the best thing for me. Can I say WTF? I just let him continue because I wanted to make sure he dug himself the largest hole possible with no way out. He keeps telling me that I need to find out what my triggers are for this "POTS" and I need to stop doing it.

"How long have you had POTS". Diagnosed 1-2 years, but I've had it for about 10 years. "Well you need to stop thinking about it and just live. You are worrying too much about this POTS and need to work. This is when I stop him and correct him about what POTS even is because he kept using the wrong words. He was saying Paroxysmal tachycardia or something like that and I told him NO it is called POSTURAL orthostatic tachycardia syndrome. Then I went on to tell him that I used to work. Quite a lot actually and I eventually had to quit because I COULD NOT WORK ANYMORE due to my heart. "Well you need to find a job that you can handle because that's the best thing for you." WOW WOW WOW. I was so mad at this point, I picked up my purse and said, well there is nothing you can do for me, so this is over.

He stopped me. That's when he realized that I wasn't a freakin' idiot and said, "I know that what you feel is real. I'm not saying that your HR's aren't high or that you aren't having PVC's, you just need to realize that this will never go away and you need to live with it. I told him, what the hell did he think I've been doing for the past 1o years. I've been DEALING with it.

That's when I brought out the big guns because you have to think like a doctor. I said that I had been to Cleveland Clinic and they diagnosed me with this and they believe it's a dysfunction of the autonomic system and has nothing to do with the fact that I'm not working. That's when he started telling me about his lovely daughter. She's such an amazing basketball player. Very very fast runner and can do so much stuff. Thanks asshole for reminding me how much shit I can't do on a daily basis. He said that she has nervous system problems too, but she learns to deal with it by playing basketball. That's her way of channeling it. WTF? I asked him if he's ever had a 140 HR just from standing up from a chair. He gets a bit quiet and tells me that he had a fast HR a few times and it can be scary. That's when I pushed even further and said, what if it happened EVERY TIME YOU STAND!!! He had nothing to say about that.

He asked me what Cleveland Clinic was doing about "POTS". Oh to interject, he was talking about POTS like it was herpes or something. HAHA Just weird. Anyway, I told him that they wanted me to increase my florinef dosage and salt intake. The look on his face was "I have no idea what this girl is talking about, but I'm going to pretend like I do". He said, oh how has that worked for you. I told him that I had already tried that last year and it does nothing for me at all. The only thing that worked was a beta blocker, but as the weather got warm it stopped working because of my severe heat intolerance. To further prove that he had no idea what he was talking about, he said that "Every 5 years or so, car companies come out with new model cars. There are new computers available too. Maybe next year they will come out with a new beta blocker that won't give you heat intolerance." ROFLMAO!! This guy thinks the beta blocker gave me heat intolerance. haha Then I told him about my elevated catecholamine levels upon standing and that has a lot to do with my rapid heart rates. Once again, he had no idea what I was talking about. I totally out-doctored him right there, but this was all on purpose.

Towards the end I was shifting a lot on the exam table, looking at my purse, floor, purse, floor. He said, well I'm very sorry I can't give you a pill here today. I immediately interrupted him and said that's not what I wanted!! He seemed confused by this comment and then he got up and left. He told me I should contact one the hospitals in the area because they have a very prestigious cardiologist/EP department. I told him that I had already...I see the head of the freakin' EP department of that hospital! I also explained to him that I had a tilt-table test. "Oh you had one of those?" I said yeah that's the only way you get diagnosed with POTS and I've had 2. One at the local hospital and Cleveland Clinic. That was basically it. He said to "keep in touch". Why? So I can come back to you to hate myself even more?

What an asshole.

Basically this office visit made me have more PVC's because I was so pissed off by the doctor. I am writing a letter to the corporate office about this. He was the biggest piece of crap I've ever seen since that ER visit like 4-5 years ago who said I was a heroin addict looking for drugs. I believe to this day that was an adrenal crisis...

As Suspected...

As I kind of guessed, I begin taking vitamins and the heart palpitations start. Why? This makes no sense to me at all. It's not like I'm taking weird things. I added P-5-P (B6), biotin and B2. How is any of that weird!! The other supplements I've taken that have given me heart palps includes l-carnitine and CoQ10...Once again, why?

I don't know what to do about it. I'm thinking this time to just fight through it rather than stopping. I know the weird beats aren't threatening as they've been captured on an EKG before.

We'll see how this goes. I think it has something to do with my breathing and sinus arrhythmia. I believe the PVC's are happening as I inhale or after I exhale.

On a completely different topic. I had terrible mid-cycle pain this month. Last night I was in agonizing pain.

Labs Drawn

I had to make an appointment with the nearby hospital to get my labs done. First they had to order in the perchloric acid needed for the one test (pyruvic acid). This is a reagent that Labcorp doesn't even carry since there is a risk of explosion if it's not handled properly. haha This reagent must be chilled before applied to my blood, so it had to be refrigerated at least 2 hours before I came in. Hopefully everything was done right. It's the same hospital that did my NutrEval test and that worked out well. Thankfully my veins cooperated really well. Man I could not believe it! That lady hit my vein and the blood just came pouring out hahaha I filled up all the vials in no time and without a tourniquet (except for the initial puncture).

My sleep schedule has been off lately. I think it's because I feel so awful during the day, so I tend to want to stay up later and later since it's usually cooler at night thus I feel better...

Now I can start taking supplements again to see what happens. Why do I have this feeling that I'm going to feel like hell this week? lol

I'll be sure to post my results of the tests when I get them. I have no idea how long that might be...Most of the labs are done at the hospital from what I was understanding, so it shouldn't be too long.

Woohoo! My hormone doc ordered Mito labs!

My hormone doctor has agreed to order mitochondrial tests for me. The mitchondrial doctor I talked to on the phone a few weeks ago gave me a few tests I could have done to see if this issomething I should pursue further. She did warn me though that even if all of these tests come back normal, it doesn't mean I don't have a problem....haha She just said that if these DO come back high, then we know without any doubt there's an issue. If that is the case, then I'll need to figure out a way to get my butt to Atlanta, GA...One thing at a time...

I just gotta call around and see what hospitals even do them. The one has special handling, so I can't just walk into Labcorp or Quest and get it done.

Pyruvate (Pyruvic acid)
Lactate (Lactic Acid)
Creatinine Phosphokinase (CPK or CK)

Then I added a few of my own to just see what's happening:

Homocysteine
Serum Copper
Ceruloplasmin

I also have to call the insurance company to see if any of these ARE NOT covered...

Still Nothing From Cleveland Clinic

This really is just unbelievable to me.

I called on Thursday and got the secretary. I thought, "oh good" just the person that I've been playing phone tag with. Well sort of. To play tag you need the other person to try calling YOU back, which wasn't happening. I told her that I was trying to be as patient as one can be, but I've been waiting and calling for the past 6 weeks asking WHEN I'd get my report. 5 weeks ago I was told it would be finalized the next day and then sent out probably over the weekend. Now I call and I'm told the same thing each and every week. I want an answer NOW as to when my report will be in my hands...

She looks me up in the system. "oh..um...I guess there must have been some kind of oversight. I don't know why your report wasn't finalized". I told her that I've been told that same thing for the past 4 weeks and nothing has been done about it. "I will have the nurse call you when it is finalized". Okay so when should I expect the report to be in my hands, so that I know when to call and complain again. "I don't know" Well here it is Monday and no report, no phone call. NOTHING. What in the HELL does one have to do to get a damn report from Cleveland Clinic. This is not acceptable.

I hate to burn bridges, but I don't think I ever want to go back there. Just awful.

So...tomorrow I am calling again. I hope I get the secretary, so I can tell her that whatever it is they are doing to get the report finalized ISN'T working. I want my chart put ON TOP of the pile and it stay there until the doctor signs off on it. Period. If this doesn't work, then I'll have to call the cleveland clinic ombudsman to step in for me.

Still Not Doing Well

I was really hoping to see some improvement, but I am really bad...again. I felt decent for like 3 days as far as mood goes. But my heart has just been terrible.

I made myself go to the park today to take a short walk. My heart rate was like 150 as we were walking around, but I just made myself continue on. Suddenly it felt like someone was pushing on my throat and I told my husband I needed to sit down like NOW. We made our way to a picnic table and my HR would not go down even while sitting. I laid down on the table and immediately my heart rate went down to 70. /sigh

I felt completely out of my mind like I was watching myself watch myself.

Cleveland Clinic can kiss my ass. The autonomic department is incompetent and tomorrow they will be getting a very mean call from me. I have had enough of waiting around like a chicken with my head cut off. I want some freakin' answers as to where my report is at. They never bothered to call me back last week and now the bitch has to come out to get anything done. I'm going to tell the woman that I want a DATE that my report will be in my hands. Every single day after that report isn't in my hands, I will be calling them. Every single day until it IS in my hand.

My eye floaters/bright things are all back, so this has to be related to me feeling terrible.

I've Been So Ill Feeling

I don't know what is happening, but I've been SOO ill.


I've been researching non-stop since I got the NutrEval test back. I think I need to further pursue a possible mitochondrial disorder, but just don't have the funds to do it. For now I figured I'd just start on some of the supplements suggested and see how I do.

Well something that I started taking is making me feel terrible! I've never experienced this feeling before. I've had chronic, constant nausea. I feel hungry, but as soon as I start to cook, I can't possibly imagine actually eating the food. I've been making myself eat. My sitting heart rates are way up. I was tachying away at 122 while sitting at my computer chair. OMG!

Yesterday it was beautiful outside, cool with low humidity and I nearly collapsed at the park while taking a gentle stroll. Normally where my HR is like 118, I clocked in at 152, with shortness of breath and felt like hell.

Here's what I started taking:
Fish oil
l-carnitine
P5p (B6)
SAM-e

Today I took nothing, so we'll see how I do. I feel like a piece of shit today. Worthless. What the hell am I even doing here. I can't do anything. My sister wants me to help her buy some trellises from the store and I'll have to tell her I can't do it. What a worthless piece of shit I am. Seriously.

I'm sick of this.

Too Much Norepinephrine!

I got another call from Cleveland Clinic today. It was the nurse and she said she wanted to get clarification of my catecholamine results since she was not sure how to read them to me.

Supine norepinephrine was 125. She said this was within normal range.
Standing norepinephrine (10 minutes into tilt-test) was 613. That was out of range.

That's like an increase by 5X's. The nurse said that is way way too high. Normal is doubling, so around 250. The doctor says that is likely why my heart rates are soo incredibly high when I am standing, yet what doesn't make sense is why does my BP not go up? Norepinephrine increases blood pressure.

I asked her about the epinephrine and she said the doctor had nothing to say about it. So I have to keep waiting for the report in the mail until I can actually SEE the results. Who knows how long that will be...3 weeks and counting...

Preliminary Catecholamine Results

There's been some sort of hold up on my report from Cleveland Clinic...I asked the nurse about my catecholamine levels.

She said that my upright norepinephrine levels were high at 613.
She also said my epinephrine levels were below detectable limits <10.

Not sure what all that means right now and I'm not going to come to any conclusions until I see them for myself.

In crappy news, the floaters in my eyes have been terrible. I hate to even call them floaters because they are not dark spots. They are very bright bursts of lights that are either dark (on light objects) or bright (on dark objects). Very very similar to an after image. .They are very distracting and are in the center of my vision...

NutrEval Results Are In

Here are the results! I finally figured out privacy options on photobucket, so here's a link to the album with the NutrEval results. The guest password is birdladyblog to gain access! No offense but I didn't want any of you rummaging through my personal album, so everything is locked down now. haha!!

The results are QUITE extensive. My urinary MMA, Formiminoglutamic acid and Sarcosine are all elevated, which according to wikipedia/google are indicative of a B12, B6 and B9 deficiency. I guess this wouldn't be such a big deal if I haven't already been taking 1000mcg of Methyl B12 and Folate (B9) on a near daily basis!

There are a few amino acids on the list that have me really wondering what is going on.

I have the following elevated:
a-Ketoglutaric Acid (AKG)
Leucine
Isoleucine
Sarcosine
Formiminoglutamic Acid
B-Aminoisobutyric Acid
Taurine
Methylmalonic Acid
Tryptophan
Cysteine
Glutamic Acid
Proline
Arachiodonic Acid
Docosatetraenoic Acid (DTA)

Most of the things online only talk about if your levels are low...That doesn't help me much! haha

I'm on my own to interpret this test! More to come. I'm too tired to write a whole bunch up right now.

Interesting Development Regarding Antibiotics

I thought I'd bring my idea of an antibiotic helping my POTS symptoms to the dinet.org forum. This is a website dedicated to dysautonomic function. Apparently I am not the only one who has experienced this temporary relief of symptoms while on an antibiotic. One member suggests it could be a side effect of the actual meds, but I have to wonder if there is more to this!

My POTS did start around the same time when I contracted Epstein Barr Virus from some unknown origin. I wasn't dating anyone at the time (that I can remember), which is supposedly the "kissing" sickness.

Perhaps I have neglected this aspect of my problems. I didn't go on this antibiotic thinking I'd feel better. I just wanted to get rid of this darn infection so bad.

I don't know what to think about all of this. If you'd like to follow the thread on dinet you can find it here.

Check this out

This is kind of weird and I don't like to jump to conclusions too fast. First off I am not CURED or anything like that. However, these past few days I've been feeling better. Now I couldn't figure out anything that I had changed to make me feel any better. Hydrocortisone dose is the same, florinef is the same, salt intake the same. I haven't changed any supplements or anything like that at all. So what is it that IS different...

A few days ago I got a terrible bladder infection. It literally came out of no where. One minute was feeling great, next I was in terrible pain, having to pee every 5 minutes and I was actually peeing out BLOOD. My urine was red red with blood clots...YIKES. For the past few days I've been on antibiotics AND I've been feeling better! WOW!!

I really have no idea what that means, but it is certainly interesting. Yesterday I rode nearly 2 miles on my recumbent bike and then we went for about a mile walk. I had my usual fatigue, but my heart wasn't that bad at all. Maybe I am just having a good few days and it is coincidental.

Who knows but I will definitely take it.

Things I Do To Stay Cool

It's pretty hot here in western PA today. Right now it says it's 81 with 66% humidity. The humidity has finally kicked in this year, which makes getting around pretty darn frustrating. Since I have medical conditions that are worsened by the heat, I've learned ways to cope and keep cool.

1) Water, water
I always try to have some sort of drink on hand. The problem with just drinking water with POTS or adrenal insufficiency, is that you'll actually mess up your electrolytes even more. With my water, I also take Thermotabs which is a sodium chloride tablet. This helps me to get fluids without bringing my sodium levels down too low.

2) Wear as little clothing as possible
I know this sounds like dumb tip, but it does help to strip down to bare minimums. During the summer, I'm usually wearing my bikini top and shorts.

3) Wet towels
If you are really really hot and can't seem to cool down, then placing a cold wet towel/rag on the back of your neck really works wonders. You'll have to get new cold water often though!

4) Cooling Vests
I do not own one of these, but I've heard they are absolutely amazing. There are several websites that sell vests which are meant to hold ice packs. The ice packs last a few hours and can be refrozen over and over again. Some people on dinet.org say they make the summer much more enjoyable for them as they can do things they wouldn't normally be able to do.

5) Invest in a fan/air conditioner
We do not have whole house air conditioning, which is probably a little unbelievable for some of you. Our house is old and does not have the duct work available, so we are forced to use the window units. It's nice to keep at least 1 room in the house as the "sanctuary room" that I can run to when I am getting really overheated. If humidity isn't a problem where you live, then a fan or swampcooler may work really well for you too.

6) Dip in a pool or lake
If you own a pool or have a neighbor with a pool, this is always a really good option. Getting into a cool, swimming pool can feel absolutely amazing when it's hot outside. If you aren't lucky enough to have a pool nearby, then the local lake will work too! I'm not much of a "beach" person, but this year I think I might try out the swimming area at a lake near my house. It's better than suffering in the heat.

Always Gather Your Medical Records As You Go

I've been on the phone with various doctor's offices in the past few days and this entire experience has made me realize how important it is to gather your medical records AS YOU GO. My pediatrician said that '84 birthdays have been destroyed and that my next best bet was to call the doctor's office I transferred to after them. Well that office has NO idea whether those records are there or not unless they pull them from storage. Pulling them from storage involves a fee, about 2 weeks of time and who knows what other hassles.

If I ever have children, I'll be sure to keep all of their medical records on file for them. That way when they get older, I'll be able to hand them over to them after high school for future reference and they won't have to go through all of this.

You never know when you'll need to look through you or your child's records. As a parent you'll be more aware of any trends that are occurring with blood work too. We tend to listen to our doctors when they say things are normal without ever seeing labs. If we gather our labs, then we can become our own advocates and avoid suffering with conditions for many many years.

NutrEval Finally DONE!

I've had this kit for so many months, but finally got around to getting the NutrEval test done. The test is soo convoluted and it requires a lab or hospital to take 4 vials of blood, spin them down and then transfer cells and plasma into separate tubes. No one wanted to do it for me. Labcorp and Quest diagnostics were worthless. There was 1 lady who said she'd do it for me at Quest, but she couldn't guarantee if she wasn't working that the lady who was would. Well that does me NO good because I have to take urine the morning of too.

I found a local hospital (about 45 minutes away) would do it for me for a mere $7 charge. So we traveled up north and got it done. It was still a disaster...The lady seemed confused and I just told her to follow the directions and I'll take the blood and vials with me. We got everything and I called Fed-Ex to come pick it up. I'm just waiting for them now.

This test is very comprehensive. So much so that I will have to do a lot of research in order to interpret the results! Here's a sample report in PDF I'll expect to get from them. I am mostly interested in the nutrient, element and catecholamine information.

Tomorrow I may call Cleveland Clinic to see if they have the results of the catecholamines yet.

Edit: FedEx just came and it's gone!

Update:
Here are my results to the NutrEval test.
If you would like more in-depth information on what my results showed, then read this post.

Cooking With POTS

This isn't about cooking with cooking pots, but with POTS (Postural orthostatic tachycardia syndrome). I thought this would be a fun considering the lovely pun! (hehe I rhymed)

Cooking with POTS is about as difficult for me as what a healthy person would equate to running 5 miles. Getting the pots out of the cabinets takes so much effort. GOD forbid something is still dirty from the last meal and I have to rewash it. I slowly stand up from the squatting position and walk over to the sink to fill it with water. Once that pot gets heavy, my arms just want to stop holding it because my heart doesn't appreciate this extra effort, so I rest it on the metal lip of the sink. Phew. That makes it a little easier.

I walk over to the refrigerator and grab some frozen vegetables and/or rice. These are 2 easy side dishes for me. The amount of required standing is minimal, so it's not soo bad. Still during this entire time my heart rates are 135+. I dump the rice or veggies into the pot and set it down on the stove. Almost there...phew!

Now I got to get the main dish ready! Oh no. This is normally when I really start to feel the "burn"....Grabbing another heavy dish out of the lower cabinet is tough. Going from that squatting position to standing again is terrifying. Now I got to walk over the refrigerator, get the chicken out of the refrigerator and prep it. I'm not that creative when it comes to food dishes, but I always make sure I put a lot of salt on my foods!

By the time I wrap aluminum foil over the dish, I need to get out of the kitchen and sit down.

On really bad days I just can't even do it. I have to ask my husband to cook because I'm soo tachycardic.

This might sound weird, but if I were a fainter, then people could SEE I'm suffering. "oh wow this girl isn't feeling so well, she fainted". But nope, I don't faint so as long as I look okay people think I must feel okay. I can certainly tell you that is not the case. I'm a stubborn person, so I just keep going until it gets soo difficult.

Since we are gluten free, egg free and we watch the ingredients in our foods very carefully, we cannot order out EVER. We cannot eat out EVER. I have to make every single meal in this house and it's tough some days. I'm not complaining about making the food, I just know that even normal mom's and housewives depend on McDonalds, Pizza Hut or their local Chinese restaurant at least a few times a week and I don't have that option! I really wish I could order a Made to Order sub at the gas station down the road...Nope can't do that. No matter how bad I feel someone in this house has to cook and it's my responsibility!

On Tuesday or Wednesday, we are getting the blood drawn for the NutrEval test, which will test A TON of different nutrients. I am hoping it finds something really wrong so I can start supplementing with it. Maybe this is just a rare nutrient deficiency and I'll get better!

The Trip to Cleveland Clinic

The drive there was a lot worse than I was anticipating. I don't remember the drive to Cleveland being such a problem, but it was awful. Our GPS told us to go over a closed a bridge, make lefts where we were not able to (divided highway) and was generally wrong most of the trip.

We got there and thought I was going to have a panic attack from all the stress of trying to find the entrance to the parking garage. Things were horribly signed and the one way roads and inability to turn around ANYWAY made it extremely stressful and frustrating. They really need to make the signs larger and closer to the road so drivers can see them ! I had to pop a 15mg HC stress dose because I felt like I was going to lose it in the parking garage. That snapped me out of it!

I got in there and the nurse rubbed me the wrong way. She was a weird one. I was asked very specific questions about my "first episode", but when I tried to explain my point further, I was rudely interrupted. I brought in all of the requested labs (holter reports, ECG's, echos etc) and they didn't even seem to care! I don't know why I was even told to bring them in the first place. When I was trying to explain to the nurse my history, I felt like I was being interrogated by an enemy soldier. She was second guessing me, telling me there's no way I could possibly be feeling that way. When I told her that my heart rates hit 160 on a regular basis, she had the nerve to say "Well you walked the whole way back to the exam room, got weighed and you seemed fine". I told her very sternly that my heart was racing the ENTIRE time. Once again she just did not believe me at all. I was getting pretty ticked off the longer the nurse was in the room. She down played every single thing I would say.

Once the doctor got into the room, the exact same thing happened. She told me that everything I brought in today would need scanned into their computer system. Nothing is done on paper. Ok...so why was I told to bring all of this in? I would have happily emailed it to whoever takes care of that stuff.

The 2nd round of interrogation began. I don't know who was worse, the nurse or the doctor. For some unknown reason they focused so much attention to my "first episode" and didn't want to hear much about anything else.

My first episode was during summer band camp in 2000. I told her that it was very hot outside and I immediately felt weak, heavy, lightheaded and overheated. She said, well if this happened as soon as you walked outside, then you were probably not dehydrated. I told her yeah that's what I thought too. She asked me if I sought medical treatment or went to the ER and I told her no. I just sucked it up and went about my marching. No one else was having these problems.

Learning the marching formations, bending down and holding my arms up to play was awful. She said that it seemed pretty unlikely that I could finish 2 weeks of marching and do all of this if my symptoms were as bad as I described. I told her not to underestimate determination...LOL I'm a pretty stubborn person.

Eventually we got to more recent history where it was first discovered in 2007 that I was having periods of tachycardia. I told her no one ever took me seriously, which is ironic because THEY WEREN'T TAKING ME SERIOUSLY! I told her I was diagnosed with adrenal insufficiency, b12 deficiency, alopecia areata. She didn't even care about the AI.

After the interrogation, she listened to my heart and told me that she'd like to do a tilt test. She explained how they do it at Cleveland Clinic which was much different than what I had seen online. They first take 3 minutes of control heart rates/BP's, then tilt you for 2 minutes at 30 degrees, then tilt you for 2 minutes at 45 degrees. After that they tilt you for up to 45 minutes at 70 degrees. I told her that I wanted to have my catecholamine levels tested with this test, so she added that on.

I went back and was strapped down. They first placed the IV in my arm and I had to rest for 30 minutes to get the supine catecholamine levels. I was glad to see that they did this right. After 30 minutes, they couldn't get any blood out of my vein since I was lying down! I have no idea what they ended up doing, but it worked. I just hope the levels weren't higher than normal because I was a little freaked out that they couldn't get blood...

They took 3 minutes of control HR's/BP's and then it began. If you've never had a tilt test done, it's an experience no one can possibly explain properly to give you the sense of how miserable it feels. As they started tilting me up, I could just feel my body go..OH NO! NOT AGAIN! haha

Immediately my HR's began to climb. Once they put me up the full way to 70 degrees, it was bad. First reading was 119 and that's the lowest HR I had during the entire test. I got all the way up to around 150 and stayed there for the entire test. The nice techs/nurses doing my TTT took down any comments or symptoms I was having during the test and it is interesting. At minute 6 I told her I was having butterflies in my stomach. At minute 14, I had that same feeling. Then at minute 15, I started to sweat and felt really hot. I had them pull the sheet down off of me. In that room, it was FREEZING beforehand so obviously my body was responding to something. Minute 16 I told the lady this is very typical of how I feel and my heart rates won't be going down until they lay me back down. Guess what? I was right! My HR's continued to stay steady until they laid me back down at minute 45.

Once they tilted me back down, they immediately went from 150 to 75. I had major heart palpitations, PVC's, couplets, PACs. It felt awful. It was awesome to see they were captured on the EKG!

During the tilt-test that rude nurse came in at some point (I can't remember exactly when, but my HR's were into the 150's) and she was like..WOW you were RIGHT! Oh my goodness!!! Your heart rates really do get that high!! That's incredible.... Uh. wow thanks! I'm glad that I could prove you wrong jerk face. Do you think I would be lying about it? Taking your pulse isn't exactly rocket science with a freaking heart rate watch!

After that test, everyone treated me completely different. The weird attitudes were gone. They knew that I was seriously messed up. Dr. J (another cardiologist in that department) came in and said you have severe dysautonomia or maybe I should just say very marked dysautonomia. I think he was afraid to say severe, but it came out any way haha. Then Dr. F said practically the same thing as he did but in nicer bedside manner.

Overall I am happy that my heart cooperated! lol

My one complaint about Cleveland Clinic is that they judged me by the way I looked and not by what I was telling them. I look pretty healthy, I think.
But inside, my body is screaming for help. I told them that I'm a pretty strong willed person and I'm here now (after 10 years) because I need to control symptoms. It's getting to be too much for me and it's affecting my every day life. Even the winter was bad this year (before beta blockers), so that tells me I'm just getting worse and worse. If I can't get a break from this even in colder temperatures, then it's getting very serious.

On Monday I have to call them to schedule a few more autonomic tests. I'm getting the QSART testing, valsalvar maneuver and heart mapping done. I'm not completely sure what is all entailed, but I know that it doesn't involve any dyes or radioactive injections. I told her I wanted to avoid those for now. She was very understanding.

I'm not happy that they were treating me like crap when I first got there, but I'm glad they came around when they actually saw what I was going through. I feel like I had to prove myself to them!

Here are the vitals taken during my TTT. You can see how crazy my HR's go despite my blood pressure keeping up until the very end of the test. I think a small dose of HC would have made my BP's come back up a bit toward the end. I was feeling pretty exhausted at the end and immediately took 5 when I got down off the table. I had been due for a dose in the MIDDLE OF MY TEST!!

Stage----BP-----HR
C-01----101/61 74
C-02----105/56 72
C-03----105/61 74
C-Mean-104/59 73
30-01---114/66 89
30-02---109/61 88
45-01---106/61 103
45-02---108/68 106
70-01---115/71 119
70-02---114/64 123
70-03---114/67 126
70-04---106/63 125
70-05---108/59 133
70-06---104/60 133
70-07----99/64 135
70-08---107/63 125
70-09---108/64 135
70-10---107/60 133
70-11---104/68 135
70-12---101/66 133
70-13---107/62 140
70-14---103/63 140
70-15---121/74 145
70-16---106/61 145
70-17---109/66 142
70-18---127/81 150
70-19---107/74 148
70-20---116/71 145
70-21---121/68 140
70-22---101/61 140
70-23---103/67 148
70-24---114/54 153
70-25---107/66 148
70-26---121/49 142
70-27---108/63 140
70-28---101/46 140
70-29----88/65 148
70-30----98/53 145
70-31---102/69 145
70-32----90/65 140
70-33----99/50 148
70-34---101/69 148
70-35---100/57 150
70-36---100/55 150
70-37---101/66 148
70-38----95/67 145
70-39----94/57 150
70-40----88/64 148
70-41----96/48 148
70-42----93/48 153
70-43----92/69 150
70-44---103/55 150
70-45----95/51 150
Rec-01--126/62 77 I was having major heart palps. PVC's with couplets
Rec-02--114/59 75 1' Marked sinus arrhythmia was noted
Rec-03--110/57 84 More palps
Rec-04--107/55 83
Rec-05--107/53 83

Mentally Preparing Myself for Cleveland Clinic

I called CC today to just get some more information on what I'll need to do. It looks like I might be needed more than 1 day, so we are going to have to make some arrangements.

I know that my adrenal insufficiency diagnosis is going to be a problem with this doctor. I told the assistant on the phone, that I wanted it noted on my chart that I have this so it's not a surprise/problem when I come in next week! It is with every single doctor I see.

"Yeah...I never had a stim test." As soon as those words come out of my mouth, the doctor will probably go into the "well it's not good to be on steroids if you don't need them and they'll make your bones crumble". I can already hear it now. So I'm wondering if this doctor is going to poo-poo it or want me to see one of their endos. HAHA If they are willing to put me on Dex and then do a stim test, I say bring it on! There's no way I can come off the HC as I'll likely go into crisis. I couldn't even lower down to 15mg! And...there's no way my adrenals haven't atrophied over the past year on HC. They won't likely stim whatsoever and then I'll have my nice Addison's diagnosis. I still have to wonder about my mildly elevated 17-OH progesterone. My hormone doctor immediately dismissed it, saying it wasn't "high enough". I'll never know. I've seen some info that late-onset CAH usually doesn't present itself with the crazy high levels until stimmed with synthetic ACTH.

Since it's warm out, I really need to be on florinef. It's killing me. My sodium is dropping (new blood work) and I just feel terrible as soon as the room heats up. Gotta love those salt cravings, which are nearly impossible for me to cure since I've stopped eating vinegars (olives, pickles) and all wheat (crackers, pretzels). I had one of those awful headaches yesterday and since I wasn't on any florinef, I'm thinking the headaches might actually be low aldosterone or low cortisol!!! I'm realizing that lowering my dose hasn't been so good (took a few weeks!), so I'm taking 20mg at the moment dosed 10, 5, 5 So..I'm going to try taking florinef again. Tomorrow I'm trying 1/4 tab of florinef and going from there. I'm not worried about it messing with my tilt test because it didn't before.

All I hope is that CC takes me seriously and runs tests. That's all. I don't need to walk out of there with a solution or even any new meds in my hand. I just want to get enough testing done to determine the type of POTS I have. Is this a mitochondrial disorder? Genetic disorder? Blood pooling in my limbs? High catecholamine levels? If I can get some answers to those questions, then I'll be satisfied. I truly think I have something WRONG with my body. I've been trying to do some leg exercises lately. Oh my gosh, it's soo awful for me. Today I woke up feeling pretty damn good with no headache. Then I did a bunch of leg raises (while LYING DOWN) and my heart was likely 150+. Leg exercises are worse than arm exercises for me, which isn't supposed to happen...I don't get it anymore and I don't even try to get it.

Well that didn't work...

Sometimes you have to take things away before you realize how much of an effect they were having.

I sincerely forgot to take my beta blocker a few days ago. Well I didn't notice any problems, so I thought I'd "forget" the next day. I went 2 days without any problems whatsoever. My heart rates have been high since it's warmer out now, so having high heart rates wasn't alarming to me. Today, I purposely did not take the beta blocker. I didn't think anything of it and was going about my day. I noticed my heart was beating REALLY weird. I thought it was odd, so I started to feel my pulse and I could actually feel the skipping beats. I've never ever in my entire life have felt my heart do what it was doing today. It scared the living &%#^ out of me.

I realized that I needed to take the beta blocker and see if it got my heart beating back on the right track. It was all over the place. It would go really fast for 4 beats, then slam into my throat really slow, speed back up and rinse, repeat. All of this was happening as I was trying to find a new pair of pants to buy! haha I was sweating in the dressing room and just felt soo uncomfortable and even nauseous. It took 45 minutes for the beta blocker to kick in and then all of those crazy beats disappeared...completely. I have no idea what happened to me today, but I was ready to go to the ER. I didn't even think to take my BP today. /SIGH

Going down to 15mg of HC was disastrous. It took me 1 day to realize that was a bad bad bad idea, so I'm back up to 17.5mg. I seem to do well here for now.

In 2 weeks I am going to Cleveland Clinic. I have to get all the paperwork (labs) ready. I was trying to be off the beta blockers for the TTT, but I'm not sure I can even do that...

Lowering my HC

This is one aspect of my treatment that I've never changed, so I've decided to start slowly wean down on the HC. Originally I was on 30mg of HC and that was way too much for me. Then I went down to 25, 20 and now I've been on 17.5 for about 3-4 weeks.

Today is my first day at 15mg and I'll hold steady here for a few weeks to see how I am reacting to it. I want to be on the least amount of HC as physically possible.

Forced Myself

I was not really feeling so well today, but I made myself go to the park and walk some. Heart rates were entirely too high for the level of activity I was doing, but it was nice to have the sun on my face. Afterward, I crashed. Just had to take a nap. The nap made me feel even worse (if that's possible LOL), but now I've recovered.

It's 12:30am and I only now feel good.

Today is a TERRIBLE POTS Day

Today is just SOO awful. How the hell am I supposed to live like this? I just feel like bursting out in tears because my the youthful years of my life have been wasted. If I can feel this terrible at 26, then I'll likely be in a wheelchair at 40.

Main Problems/Symptoms

I've decided to make a post that discusses what my continuing health problems are even though I've been on HC for nearly a year now! I'm also going to touch upon what has gotten better. Sometimes it's really easy to focus on the bad and I'm trying to get away from that negativity.

Symptoms that still linger:

• Lowish BP, without lightheadedness
• Anxiety
• Fluid Retention
• Rapid heart rate upon standing
• Heat intolerance
• Panic attacks set off by minor stressors
• Shortness of breath
  

What's better:

• Panic attacks are actually less frequent
  
• Fatigue improved significantly
• Able to get out of bed in the morning now!
• Not sleeping 16 hours a day
• Can partake in some activities (as long as my heart is stable)
• Frequent urination and thirst decreased significantly
  
• Sex drive is back! Woohoo!! ;-)

Most of my lingering symptoms, I would attribute to POTS. In my case, treating adrenal insufficiency DID NOT cure orthostatic issues. Because of that, I have to assume that not everyone WITH low BP and tachycardia upon standing even HAVE adrenal issues. Something else is going on that hasn't been uncovered.

Small Victories

I went to the store today on my own. YAY! I didn't freak out or have any anxiety about it. Often times I only post the negative things that happen in my life, so I thought I'd throw in a good one!

My headaches are gone, so I have to assume it was the florinef. I'm bummed about it, but at least I feel better now.

My weight has been up and down. I lose/gain 5 pounds give or take from day to day! haha Very weird, but I've always been like that for as long as I can remember.

Today the sun is shining, so that helps. It's a little chilly and quite windy, but I'm happy. The cat grass is finally sprouting outside, so the kitties will have a treat in a few days.

Headaches

I have been getting TERRIBLE headaches lately. They will come out of no where and I feel so awful. My husband thinks it's the stupid florinef. /sigh I'm not sure at the moment, but it's been like 5 days straight with it! It hurts on top of my head, but also behind my eyes. It's worse when I bend down or try to lift anything like my head is going to explode. I never got this when I was on the florinef before, so I don't know what to think. It is allergy season as everything is bloomed, but I never had any allergies before.

It just seems like I am always battling something.

Tomorrow I am watching my nephew and I'm already nervous about driving down there. Actually I'm not nervous about the drive. I'm nervous about being away from home. I am scared to go to places without my husband with me. I had a major panic attack the other day when I had a chiropractor appointment. My husband ended up driving me because my blood pressure was like 130/92 (crazy high for me), I was freaking out and just started crying.

Had A Good Day

Today I had a good day and I don't know why. I hate that. If I had changed something to make myself feel good, then I'd be more excited. Oh well I'll take it.

I feel more puffy again though. The fluid retention is returning...

I've Been A Wreck

I really don't know what is going on with me, but I haven't been doing too well. Basically here is how things have gone down.

1) Went on beta blockers a few months ago with huge, life-changing improvements.
2) Started gaining some weight, fluid retention.
3) Developed Chilblains on my toes.
4) Heat wave set me back with heat intolerance, rapid heart rate
5) Added in Florinef to see if that would help
6) Anxiety begins to set back in
7) Increase florinef to 1/2 tab to see if anything changes, Added in Rx potassium too.
8) Feeling jittery, shaky, "out of my mind" like I drank too many red bulls or espressos

That's where I'm at right now. I cannot for the life of me figure this out. What is happening? Did the florinef do something or am I just getting worse because I am just getting worse?

Today is my birthday and when I should be happy, I'm pissed off. I'm not any freaking better. Yesterday was one of my worst days in like 8 months. I was soo jittery and shaky. Nothing would calm that down and then the nausea set in later on in the day. HC didn't help it, so I just forced myself to eat. I really wish I could see what is wrong and then fix it.

Fluid Retention

Oh my goodness the fluid retention is actually HURTING. I can't take this anymore. What am I supposed to do about this? My calves are huge, my wedding ring is barely fitting now and I just look like a freaking balloon.

First time for everything

Today was pretty hot as I complained about earlier. Tonight as I was making dinner, I noticed that I was feeling really nauseous. It really just came out of nowhere.

Dinner was ready and I started eating. By the time I was finished, it felt like a pile of concrete was in my stomach. All I had was 2 chicken wings and a salad...

I was getting this fullness near my breastbone and I started to get the chills. The waves of nausea were getting more frequent and even more uncomfortable than the last. Out of desperation, I decided to sublingual a 5mg HC tab to see what would happen. I was not late on my doses and I didn't particularly do anything strenuous to need a "stress dose". However within 5 minutes, I knew that the HC was helping. I sublingual-ed another 5mg because I figured if I was that far down the low cortisol chain, I wasn't far off from my BP dropping and it heading into something much more dangerous.

Today I can say was the first time that I've experienced nausea to that extent from low cortisol. The sad thing is that I have no idea what triggered it. Within 20 minutes of taking the extra HC, I was up and about doing my normal nonsense. There's no way it was placebo as I had my head in a bucket getting ready to barf. It sort of freaked me out because I showed no other signs of low cortisol! I ended up taking 32.5mg of HC today.

Heat Intolerance : I'm screwed!

I was really hoping that the beta blocker would help with the heat intolerance, but I'm not that lucky. I figured this would happen, so I started taking 1/4 tab of florinef 4 days ago. I haven't noticed any differences yet, but I'm not looking forward to the weight gain THAT med will cause me. Ugh...I've gained like 10 pounds just in time for summer. It's not supposed to be like that.

I was going to lay out today because it's 80 here, but I can't. There's no way my heart can handle it at all. I didn't have my watch on me, but I bet I was hitting 150 BPM.

Some days I just want to start throwing stuff, punching holes in walls and screaming at the top of my lungs. As you can guess, today is one of those days.

Would I Be Happy If...

...Time to just step away from POTS for a moment and to just let my brain flow for a moment...

I was told as a young women to love myself, embrace what we are given, don't be jealous of what one another has yadda yadda yadda. Whatever. Yet all of that is a bunch of nonsense to make ourselves feel better about how we will NEVER match up to what is "expected". Seriously. You don't see women with pear shape figures in lead roles in movies, TV shows or on magazine covers. You don't see many women with small breasts either and if they are small, they are taped, wrapped up or squeezed into corsets to look huge. I know some of you are thinking...Well that isn't our fault. It's the media's fault! I guess it doesn't matter WHO'S fault it is, it's what is expected these days.

The question I've been thinking about for the past few days has been...Would I be happy if I had full, normal sized breasts? Even the girl at Victoria's Secret told me that none of their bras fit right because I have zero chest fat. In her words, "you have nothing to push-up". This girl likely sees hundreds of women a week and I was one of the first for her with this problem. Considering that, sadly, I think I would be happier. Does that make me a pathetic person controlled by the media? Nope, I just want to fill-out a bra for once in my lifetime and not be self-conscious about it.

Okay enough of that. I'm just really frustrated with myself lately. Where's a punching bag when you need it?

/sigh

Uh What is this about?

I remember I posted some weeks back saying that I was the thinnest I had been for a long time. It was a nice! Well... in the past 2 weeks, I've gained so much weight that I am now the heaviest I've been for a long time. How the HELL does this happen to me? I feel like a balloon ready to pop and I suspect it's from the beta-blocker. I am holding onto so much water it's not even funny. I know this weight is not fat because my face and eyes are also very puffy and I haven't changed anything in my diet.

Seriously like 3 weeks ago I was thinking that I'd take myself to the store to buy new smaller jeans and now I'm thinking I'll have to go up a size. How does one gain like 11 pounds in 2 weeks?

I'm soo depressed because of this. My pants look terrible on me. I had a pair of skinny jeans I wore fairly often (and liked how I looked in them) and now they look terrible. AHHHHHH. I hate this!

MRI didn't go so well

I had the MRI today ordered by the ophthalmologist to rule out any sort of problems with the eyes or brain.

For part of the MRI I had to keep my eyes closed. This was OK for about 10 minutes, but then I started to get really disoriented and it felt like my body was floating on water. I tried to calm myself down, but I was well beyond that and felt the adrenal symptoms coming on. My eyelids started fluttering, I started to feel very faint and I just felt that last rush as my body tried to pull me through the stress of it. I realized at that moment, that if I didn't squeeze the ball and alert the techs, that I'd be unconscious in about a minute.

I squeezed the ball, but could barely talk. They ran in and I told them in broken speech that I needed my hydrocortisone for adrenal insufficiency. The lady asked me if I had them in my purse and I told her yes. She ran out and got my purse. They sat me up and I was very very faint. It felt like my blood pressure was scary low and the whole room was sooo bright. They walked me out of the MRI room into the tech area and they were asking me questions, but I could barely understand them nor get the words out. I ended up taking 15mg of HC and waited 3-4 minutes before I could feel my body come back to life. My hands were trembling as I drink water.

I went back in and finished the MRI. Phew...The whole time I was just like..please do not freak out again. I need to get this done. Please...please.

All of this happened before the contrast so it had nothing to do with that. Thankfully. I'm doing okay now, but could not believe how much that affected me!

Chilblains: From the beta blocker or B12?

Remember those weird itchy, but painful bumps on my toes? Well now I know what they are and it's either a complication from the beta-blocker or from low B12.

These little bumps are called chilblains and they occur when you are having poor circulation or if you warm the feet too quickly. Here's a link to a medical website that talks about them in more depth.

I started taking the beta-blockers about a week before these bumps showed up. At first they were very very itchy, but as long as I kept them covered it wasn't so bad. Then I noticed anytime my feet got warm, they'd burn like hell. Not long after this, my left leg started to feel numb like it feels when my B12 is low. I even made a post about the paresthesia returning.

I'm trying to put the pieces together. Maybe the "paresthesia" is from the beta-blocker and the poor circulation is then causing the chilblains too? I looked all of this up and it is possible according to this website.

"Some drugs such as beta- blockers may affect the circulation and cause chilblains"

Darn it. I might have to call the doctor and see what he has to say about it. The beta-blocker is helping so much I'd hate to have to quit it...

My Blood Pressure

As always my BP is low without florinef, but for whatever reason it's not any worse when on the beta blockers. I'm not complaining.

Tonight I thought I'd take my BP while sitting. Then take it immediately upon standing to see what happens. Normally my heart rate would go through the roof and my BP would fall even further.

Here's what it showed tonight.

Sitting: 92/66 HR 76
Standing: 95/68 HR 70

70....70 while STANDING! I don't care WHY, but these beta blockers have been amazing. I have an appointment with my EP on March 12th.

I think it might be impacting my thyroid slightly though as my basal temperatures have been really really low. Ugh...It's actually confused the LadyComp, which is what I use as my method of birth control. It's day 20 and it doesn't think I've ovulated yet... My temps aren't indicating that I have either, so I'm not sure what's up with that. Lately my cycles have just been odd. I used to get mid cycle pain, but that's gone now. Then my cycles used to be 24 days, but the past 2-3 months they were 29, 30 and 32. However, last month my cycle was only 26 days long. I don't get it at all.

Beta-Blocker Is Still Working

It's been a few weeks and I am still feeling very well on the beta-blocker. I take the generic form of Toprol XL called Metoprolol ER. It's a very small dose at 25mg. Going on them has been incredible for me and I will continue to take them as needed. The past week, I decided to start taking them every day as soon as I wake up and I haven't noticed any ill effects. Some days they do seem to make me feel a little tired, but it's not that bad. Certainly no where near the fatigue I felt prior to going on HC! haha

This week I need to clear the area out around my recumbent bike and I'm going to start working out again in small increments. I'm not really looking to lose weight or anything. I just want to get off of my butt and feel normal. I'll start out with 3 minutes (no joke) and then work up to 1o minutes. I won't go much more than that because I don't think I'm in good enough shape to be biking for 30 minutes or more. My adrenals are doing okay with the HC, but I don't want to push it since I'm not on florinef at the moment. I know I need it, but I can't start it yet.

Bumps on Foot, Getting Worse

Darn it. Why can't things just get better on their own? /sigh The bumps on my foot are getting worse. Very painful and making it difficult to walk. The original bumps have subsided, but the skin is still very shiny and red where they used to be. Now there are more bumps spreading on the surrounding toes, but these ones are way more painful than the original bumps.

I'll probably have to call the dermatologist on Monday and make an appointment. I'll let everyone what they are when I find out.

Leg Numbness and Tingling: Paresthesia is back

Ugh I hate this feeling! Let's hope that it's just low B12 because I can fix that (as soon as I get this STUPID Nutreval test done). Let's hope it's NOT the beta-blocker...! It's been awhile since this has happened because I take B12 sublinguals and I also get injections anytime I feel this coming on. Well since I was supposed to get the Nutreval test done, I stopped all vitamins and now it's coming to bite me in the butt. Just sitting at my computer desk, from the top of my knee cap all the way up to my hip is going numb, tingling. If I cross my legs or sit in one spot too long, my entire leg gets pins and needles. At night I am waking up constantly because my legs and hips are falling asleep. Oh my, I can't take this! I got to get this test done now before I go nuts.

Once the test is done, I have injectable B12 here at my house! I'll be injecting myself to save some $$ and if that helps I'm going to beg the doctor for a prescription. My mom said that her grandparents BOTH had pernicious anemia and had to get injections...Great. I wonder if that's why mine is always low and why I always have to keep taking a combo of sublinguals and injections to keep the numbness away. Maybe it's not just a dietary issue, but an absorption issue.

At the Eye Doctors...

It was an interesting visit with the more experienced ophthalmologist. First he said that I do not have a posterior vitreous detachment...Um....Okay wow? So I had 2 other doctors in that same practice tell me I did and then this guy says, nope.

He was quite concerned about the blobs, lines and "stuck" lights in my vision and has asked my PCP to order an MRI. He said that there is nothing wrong with my eyes and the White Without Pressure is absolutely nothing to worry about. He thinks the lights are neurological so I'll do it just so I can cross that off the list.

I was sort of ticked off yesterday after hearing all of this because what the HELL have I been doing for the past 8 months? I've gone into that eye doctor numerous times, examined at least 4-5 times by 3 different doctors and they all said I had a PVD? Perhaps those other doctors need to be retrained.

The good news is that, IF there is no structural damage done to the eye, then maybe I can solve the weird lights. Perhaps it's nerve damage from a mineral deficiency after all?

I got some old labs from Dr. G yesterday as well. I'm going to have my parathyroid checked as I had a few calcium levels above 10.0 with a low vitamin D level. I also am looking to have Intrinsic Factor antibodies and Parietal antibodies checked to screen for Pernicious anemia. My first B12 reading was 249! An interesting thing is that my FT3 before cortisol treatment at that time was 320 (230-420) which isn't all that bad.

Ugh Sinus Infection? Mild Flu?

My husband had some flu-like sinus bug for a few days and I thought I was lucky and completely dodged it. Well yesterday I woke up and my sinuses were clogged, throat was hurting from all the drainage and I just felt really out of it. DARN! I was really hoping that I'd missed this one. I don't feel achy or anything like that. Just clogged up, no taste, no smell and my ears are popping when I yawn. I took some extra HC and I think I'll be stress dosing slightly until I feel better. I did a lot of shoveling the night before I got sick. Maybe that's not a coincidence?

It could be a lot worse, but maybe it hasn't completely hit me yet...hahah

I forgot to mention...

...that I went to the eye doc last week some time. I got really sick of this light being stuck in my vision. The one lasted nearly 4 days. I finally found someone online that has this exact same thing as me, but sadly this thread was from 2007 and no one found anything wrong with his eyes. These lights only started AFTER I was diagnosed with the posterior vitreous detachment, so one would think there's a connection.

I saw the retina specialist I had seen originally who diagnosed the White Without Pressure and an impending vitreous detachment. This time he told me that the White Without Pressure looks really odd and it's not something he's ever seen before...Um. thanks? haha Now he wants me to see one of the more experienced retina specialists who has "25 years more experience than me". He said that since he's never seen this before, that he wanted someone else to take a look to see what we should do. He said that if this other doctor thinks it's necessary, then they may want to do pre-emptive laser surgery on it. I'm not exactly sure what is weird about it. He just said that it looks really odd, shiny, and very iridescent? These are the best, most recommended ophthalmologists in this area, so if he hasn't seen something then this definitely needs checked out. This doctor probably sees at least hundreds of eyes every week! He said that once he hears from the other doctor, then in 25 years when another case of whatever I have comes through the door, he'll know what to do...wtf? No one really has this? haha

The doc said that the lights I'm seeing may not be related to the White Without Pressure, but since I'm having some problems it's all the more reason to be seen. My appointment is February 15th.

Too Much Snow

We got A LOT of snow. It looks like up to 2 feet is outside right now and I have NO IDEA how we are going to shovel it all. Last time I tried to shovel snow, my heart rate nearly hit 200, I began to shake and I thought I was going to vomit and collapse. It took me nearly an hour to recover and that was only 10 inches of snow!

I took my beta blocker already, so that when I go out it should be working. I'm going to stress dose for this too with the HC and see what happens. I do not recommend anyone do what I'm doing... I'm just absolutely nuts/insane and don't want to see my husband do all the work. We both have "heart problems" now and I hate to see him get stuck with this.

Update: Shoveling went really really well. My heart was definitely up there, but I did not feel so fatigued,short of breath and faint. We still have another round or 2 to go, but I'll be okay. I did better than my husband...It HAS to be the beta-blocker. There is nothing else that is different and HC has never helped my heart problems.

Here are my blood pressures Sitting. 105/73 HR 89 Standing 117/69 HR 92 What a difference!

How'd that happen?

I noticed my pants were feeling kind of loose, so I jumped on the scale today. I've lost like 10 pounds in approximately 2 weeks or less. Holy cow...This is not good though as it is a sign that I'm ready to crash or something. Maybe it's my adrenals? Maybe it's all the emotional stress I've been under? I haven't weighed this "little" since before hormone replacement.

I guess I'll just enjoy it while it lasts because I know it will all be back sooner than later. My appetite has been pretty awful lately, so I bet it's that. I'd love to stay at this weight, but it's not going to happen and technically I'm underweight too...

Weird Bumps On My Foot

Yesterday morning I woke up with 2 really weird looking shiny, red bumps on my left foot. Now there must be a connection to what happened the night prior. I was getting dinner ready when suddenly I had a huge hive form on my lip. It was so big that it was actually difficult to talk and eat without hitting it! I thought it was really odd, but went to sleep and then woke up to the bumps on my foot...LOL

We will see what happens here. They are not itchy at all, but I guess slightly painful and they look really really shiny. If they dont' go away within a week I'll be calling that dermatologist I saw a few years back for my hair. She sucked, but at least she knows her stuff and can give me a proper diagnosis. I'm hoping it's just a fungus or something stupid that will go away with some cream.

My Sickness/Life Timeline...

This is a little timeline of how things progressed with me personally and my poor health. There are a lot of correlations with what was happening to me personally and with my health deteriorating.

I'm starting as far back as 4th grade because I already started to show signs that something wasn't quite right.


4th grade--Anxiety. Terrible anxiety. I would go to the guidance counselor every morning and cry. I still (to this day) have NO idea what I was scared of. I told the lady that I was always so stressed out feeling and that if I had any homework due that day, I was nervous I didn't do it right. I also had a male teacher and my counselor thought maybe that was my problem, but I never thought so...

5th grade--Completely fine. No anxiety about school except in math! haha

6th grade--Anxiety again. My grandmother died during the school year and I had a lot of trouble grieving. I would just bust out in tears during the middle of class if she gave us a hard homework assignment. I could not handle any type of stress whatsoever. This is also the year your body starts to change and I was not developing like the other girls in school. I had zero breasts and did not even need a bra, but I bought them anyway...


7th grade--This was an interesting year. I started to make new friends as all the schools come together in this grade. I ate very poorly during lunch (1 choco crunch ice cream bar every day) and I gained A TON of weight. At my heaviest I was about 150 and a size 10-12. Prior to this I was always VERY skinny and could eat anything I really wanted without worrying about the waist/butt growing. Not anymore after this year. I started working out with Taebo and I lost about 15 pounds! I looked good too.

I believe I got my cycle this year, but I cannot remember...lol It was either 7th or 8th grade.

8th grade--Nothing notable here.

9th grade--I really started to become a woman finally. Dang I was a late bloomer I think or something. This was the first time when I finally was attracted to the opposite sex. It's odd because other girls in 6th grade had C cup breasts, having sex and were WAY more developed than me 3 years later....

I got contacts this year and no longer had ugly, hideous glasses I was hiding behind. I hate those things! Why do parents give their children ugly glasses?

10th grade--I started to date people very casually. My first BF broke my heart and dumped me after 2 weeks. (haha) Then I started dating his friend a few months later and we were together for a little while, but nothing of substance ever came out of it (we were what 15? lol). I remember struggling with my weight in this grade a little more, but I was a lot better choosing foods rather than buying an ice cream sandwich every day.

The summer going into 11th grade is when I decided to join marching band. I had to go to band camp for 2 weeks. I almost died every single day there. Seriously. No exaggeration at all. I felt so ill and would almost faint every damn day because it was SOO hot. The only thing that kept me going was carrying a water bottle on my shoulder and I would sip on it all day long. I brought a HUGE water cooler (yes a cooler) and then filled my water bottle up from that. I had to drink ICE cold water or I didn't want it. The water from the fountains was not cold enough... haha

11th grade--This is where my life starts to take a bad turn. Lots of TERRIBLE things happened to me this year. I had multiple people take advantage of me or treat me like dirt while dating them. The anorexia and ephedra abuse started after one of these events and it was my way of trying to gain control of my life. I know it. One boyfriend was very controlling who only ever wanted me to give him head/hand jobs. I was just a piece of meat to this jerk. When I tried to finally break up with him, he told me he was going to kill himself. /sigh That was really stressful and he made my life a living hell for a long time.

As this was going on, a person very close, whom I trusted took advantage of me in the worst way, which was more than I could handle. I would have rather dealt with the controlling, crazy, insane boyfriend.

I also started to go "goth", but not really. I wore regular clothes, but just wore a bunch of chains around my neck and dyed the front part of my hair blonde (like Rogue from Xmen). I think this was my way of telling people to leave me the hell alone. I also did this so that if someone actually wanted to date me, they'd have to accept me for me (with chains). haha


Most of 11th grade was me trying to deal with the severe lightheadedness I experienced on a daily basis. Walking to class was a chore. I'd feel like I was going to fall down all the time, but once I was sitting, I would always recover. I think I took the ephedra because it actually made me feel better since it raises blood pressure. There were a few nights I thought I was going to die from the intense headaches it gave me on occasion. They were so bad I would bang my head on the wall...

Eventually my periods went AWOL. I went into premature menopause from not eating. I did not get them back until my senior year and I cannot even fully remember when that happened. My friends thought I was pregnant as I was drinking and peeing so much. Nope..not pregnant. I was just really freaking messed up.

In June, I had to go to prom with one of my ex's because we had planned to go together while we were still dating. I was in very poor shape and had lost A LOT of weight (from not eating). It took all my energy to make it through that night and through the after prom (which I should have skipped).

Then one day I woke up and decided I no longer wanted to wear the chains. I dyed my hair very dark red and started to dress nice. I bought nicer jeans and shirts.

I think it was the summer into my 12th grade year that I nearly died at an amusement park. I seriously CANNOT remember if it was going into my senior year or if it was the summer after I graduated... At this amusement park, I fell down and blacked out. My entire body turned blue and I could not hear or see anything. I was looking at myself, looking at myself. I can still picture my face plastered against the storm drain on the asphalt.

We went to the first aid station and my BP was 60/40 and I was so very ill. The lady there said that I must be really dehydrated and to take it easy. I took like a 4 hour nap and did not even realize I had slept at all. Even after all that rest, I continued to faint over and over again and I called my parents to come get me. I was VERY thin then. I think I was fitting into a size 2 very easily.

12th grade (Senior Year)--I remember coming back to school and everyone was amazed by how much weight I had lost. Damn! I started to get A LOT of attention from guys, but I really wasn't that interested. I did not date many people during high school. More weird stuff happened to me though which seems to be inevitable these days. I had someone take advantage of me while I had been drinking a little bit too much vodka, which is why I now hate to drink at parties or in restaurants etc. I don't like to feel out of control.

No one wanted to take me to homecoming or prom. Sad huh? I made a shirt that said, "I need a homecoming date" , but had no takers. How pathetic! I begged someone I met at a Sevendust concert to come to my homecoming and he did. I never went to my prom because you weren't allowed to go solo! /sigh I was not ugly either, so I'm not sure why no one wanted to take me. I don't think I have any pictures uploaded on my computer of myself when I was in high school or I'd put one up here. I looked damn good for homecoming...haha

My health was NOT good. I was still going through periods where I'd eat and then not eat. This was really hard on my body and anytime it would get food, I'd put on so much weight it was not funny.

I hated myself so much during this year and would have break downs in the bathroom on a regular basis. Anytime I had any stress, I'd just collapse.

I did go on to win 1st place in the school's literature magazine for a poem I written. I was doing A LOT of writing during these past few years as I was struggling to understand why certain things happened to me in my life. Some of those poems are dark as hell and would make for absolutely amazing songs. Some day that will happen.

I finished school with a 3.8 GPA. I always did really well in school even with all these health problems.

After high school--My parents forced me to go to college, so I decided to just go to community college. I did not even try to get into any large colleges as I did not want to go. I did not fill out a SINGLE college app...haha

I started meeting new people from school/work and continued to date and get into more serious relationships. I always dated older guys, somehow thinking they were more mature...LOL Some of them were good, some of them were just flat-out stupid and some of them were bad, bad, bad. haha

I also started to work full time at a cell phone company. It was out of my comfort zone yet I really wanted to try it out. Even though my boss was a jerk, it was one of the best things I ever did. I didn't think I could succeed at it, but I absolutely kicked butt at selling phones. I was top in sales almost every month. I was making quite a bit of money considering I was single and still living at home. After stupid relationship, after stupid relationship, I met my to-be husband. All that dating finally worked as I met the man I was supposed to be with for the rest of my life! That is what I was looking for all along and I think that scared most of the men I dated away.

We got married very quickly.

My health started to get much worse. I could no longer work because standing up for long periods of time was next to impossible. Retail jobs were killing me and I quit working.

A few months after quitting work, my sister found out she had a malignant brain tumor and I went into a dark depression for months. I did not want to eat, talk or even leave the house. Only after she was given a good prognosis, did I come out of my shell. This had such a huge affect on me as I thought I was going to lose my sister. My sister and I had been through A LOT because we shared a room our entire lives from age 6 until I moved out when I got married at 19.

I believe that brings us to speed to where this blog started and it should give everyone a better understanding of how things progressed with my health. I've been sick for A LONG TIME. This is not something new which is why I think I have something seriously wrong with me. I am not old (25) and for someone to be sick as young as me, there has to be an explanation for all of this. I just haven't been able to figure it out just yet. One day..One day..