Friday, February 27, 2009

Time to Update My Story

I was reading my story Part 1/2 on the left-hand side column and realized that I need a Part 3 at this point. So much has happened over the past 8 months. For starters, my hair is mostly grown back, I successfully chelated 8 rounds, my pituitary function has called it quits, and much much more. One of my biggest pet peeves is a blog that isn't updated regularly. That just drives me crazy, so I can't let my own get that way.

Once all of the results of the blood work come in either this week or next, I will be writing Part 3 of my story. Without that blood work, I feel like I haven't made any progress at all. Because well...I haven't.

Stay tuned for the update!

Thursday, February 26, 2009

Salt Free Today

In anticipation for the last round of blood work tomorrow, I am on a salt restricted diet for a full 24 hours today. So far I've done a really good job of avoiding salt. Black Pepper is a great substitute!

For some reason I was really craving a yam with some butter. Thankfully we only buy unsalted butter, so I got to indulge! At the last minute I decided to smash it up and add a touch of vanilla extract (the real stuff) and some cinnamon. It was so delicious! Too bad I don't have a picture of my masterpiece to show you. :-)

We are taking a break from our gluten free, wheat free, dairy free, egg free diet plan. Sadly neither of us are showing any difference in our digestions (good or bad), so this 2 month trial may have been for nothing. Even though my husband tested as highly allergic to all those foods, after 8 weeks he wasn't feeling any different.

The one good thing that came out of this diet, is that I am more comfortable in the kitchen. I'm am feeling more adventurous and willing to just throw in a bunch of spices to see what happens. I still never got down making gluten-free breads, but maybe I will in the future.

I'm not sure what we will do long term. I don't think wheat is good for you and should be avoided as much as possible. We are just going to play it by ear and see what happens!

Wednesday, February 25, 2009

Impulsive Me Does It Again

I am a really impulsive person. I don't know why I am like this, but I'm the type of person that is indecisive, but when I am decisive I make sudden, life changing, (maybe even stupid) choices.

We've all had moments in our lives when we do this. Sometimes it's of no real consequence. You buy a pair a shoes without really thinking about it completely. You get them home and realize that you'll never wear yellow pumps ever! HAHA Sometimes though it is of real consequence. You dump your girlfriend you've been with for 6 months for no real reason! There's other better examples, but I'll just tell you what I did..

Well yesterday, I wrote a short letter to the owner of the music studio and quit. Yeah...I quit both my voice and violin lessons. Remember that nice big post about wanting to get more serious with singing---Doesn't matter with impulsive me! Her policy is a written notice, 30 days in advance, so I have 1 more month and that's it. I absolutely love singing and I was enjoying my time with the violin. What I wasn't enjoying was the hassle of getting my ass down there and the damn chest pains I was experiencing after practicing for 10 minutes. Driving down there was just too stressful for me and it was irritating my husband. I just had enough of it. Now I won't have to worry about it. She won't be too upset because I could never pay her on time.

I've been having a hard time keeping all of my bills straight. It's just getting really bad now. There aren't too many bills that I am on time for now, which is UNLIKE me. Years ago (back when I was 18/19) I was always early with my payments. Being late for a bill would have like a national disaster. The only bills I keep on time are credit cards with special APR's on them. It would be pretty stupid to miss a payment on those.

I'm pretty upset with my decision to quit, but it's done now. I left it open to take lessons in the future and if I feel my health is in better order, then I can try again.

Thursday, February 19, 2009

Getting Through the Mid-Day Slump

MMMmmmmmMMMMmmmm...
Image Courtesy of: FreeDigitalPhotos.net

I know a lot of you out there self-medicate like me with chocolate, sweets, coffee, tea or even cigarettes to get you through the mid-day slump. Thankfully I don't smoke!

Today I can't have any caffeine, so I'm going crazy. I'll be the first one to admit that I have a caffeine problem. It's how I live my life and without it I feel completely lost. I'm really having a hard time keeping my eye balls open! haha But I must persevere. Normally at this time, depending upon what time I woke up, I would have a small cup of tea or coffee. Then at around 4PM, I lay down for about 45 minutes and then force myself to get up.

I thought well I could make something tasty to eat, but there is nothing exciting in our house at the moment. With both of us being sick for a week with the flu, a lot of our produce went bad! Our refrigerator was soo stinky once my sense of smell came back. I had to throw out a lot of food, so now we are really really low.

The place where I normally have my blood work done at, were unable to draw the IGF-1. So...I had to go to the hospital to get it done. /sigh They are doing a lot of construction up there, so the lab has been "closed". I showed up there and saw a lot of people considering it was "closed". The lady there, although she was very very nice, she obviously doesn't deal with many patients with small veins. I told her you have to tighten the band as tight as possible making it pinch my skin. She just kept telling me that that's not how they are trained and that she is not allowed to keep the band on longer than 1 minute. She kept saying the words patient comfort blah blah blah. I just kept telling her it won't work because my veins are small and in the end you'll make me uncomfortable with all the jabs.

Well after 2 jabs she tells me that they are trained not to jab more than twice and to make the 2nd one work. After 2 jabs patient comfort goes way down...No crap! During all of this, she randomly says to me, "How are you doing?" and in a tiny, high pitched voice, I let out a "OK".

To get all 4 vials, I was squeezing my fist as tight as possible and I convinced her to leave the band on. Thank goodness. The last vial took a long time to fill and we only needed 4. I've gone in to those places needing 9 vials with no problems at all. Obviously her following the rules didn't work out too well with me. It took her breaking them to get the blood out of me.

Sadly, I'm probably going to have to see her to get the renin and ACTH drawn. I still have to call the lab to see if they can do those in the outpatient center. My God, I hope so. I can't stand going to the hospital and that lady really was not that good. The women at the outpatient center are incredible. I haven't had a bad experience yet...Though I shouldn't speak too soon.

Wednesday, February 18, 2009

Preparing For Labs/Saliva Test

Well here we are at day 21 of my cycle. I have finally recovered from the flu too.

I started fasting at 8PM tonight for the blood work tomorrow! Tomorrow is a big day for blood work. I am having the following drawn as close to 8AM as possible.

DHEA-Sulfate
Free & Total Testosterone
Progesterone
Estradiol
LH
FSH
Prolactin
IGF-1
GH

I've never had a lot of these things tested, so I'm very curious.

Before I go, I need to fill the first vial with saliva for the cortisol test. This is a lot harder than it sounds. I'll have to dig in the refrigerator for something I can sniff to produce saliva. Another way to make saliva is just to try yawning over and over again. It's funny how many times you'll actually yawn and produce a TON of saliva.

I took another week off of violin/voice because of the saliva test. The one for 3-4PM would have been a problem since it is during my lessons and the drive back home. I wasn't about to collect saliva in their bathroom...

I am unable to eat chocolate, onions, garlic, cabbage, and cauliflower/broccoli and unable to drink coffee, tea, and other caffeinated drinks tomorrow. I'll have to constantly remind myself of this tomorrow.

These were the results of my first saliva test I had done through this company during the summer of '07.
07:00 - 08:00AM 6 Depressed (13-24 nM)
11:00 - Noon 5 Normal (5-10 nM)
04:00 - 05:00PM 2 Depressed (3-8 nM)
11:00 - Midnight 2 Normal (1-4 nM)

Cortisol Burden: 15 (23 - 42)

DHEA Dehydroepiandrosterone 4 Normal Adults (M/F):3-10 ng/ml

It's was pretty terrible...We'll see how things look now.

Sunday, February 15, 2009

Still Recovering...

Last night and this morning were so bad, I cannot even describe it. I've been popping decongestant meds every time I can according to the box and even still, I can barely breathe through my nose. They are so plugged up that when I swallow it is popping my ears!

The only thing that has given me some relief, so I can sleep, is the medicine with pseudo ephedrine. You know the stuff where you have to practically sign your life away when you buy it? If it weren't for this stuff, I would have gone completely mad by now. In 2 more hours, I get to see how I really feel when it finally wears off and I'm not looking forward to it at all.

My sister is still sick too, so this must be quite the flu! We are now at day 5 and I don't see myself recovering by tomorrow.

Saturday, February 14, 2009

Breaking News: DMSA TAKEN OFF THE MARKET

The FDA is taking DMSA off the market as a supplement and will only be available by prescription. This article was first posted on the frequent dose chelaiton yahoo group

A member of the frequent dose chelation yahoo group said they have received notification from VRP that they will be selling off their remaining stock and they are discontinuing the manufacturing of DMSA.

I can confirm this. When I checked my email today, this is what I found. Click on the picture below to see it in a larger, readable size.


VRP is where I purchased my 25mg DMSA capsules. Lots of people following Dr. Cutler's protocol were being supplied by VRP, so this will without a doubt FORCE people to STOP chelating. This will also affect the source in South Africa because you will need a prescription to order it. Clearly this is a huge blow to Dr. Cutler's detox protocol and any other group (autistic children) following his program.

To say that I am mad would be an understatement at the moment. I am lucky enough that I can get a prescription for DMSA, but at triple the cost! VRP was dirt cheap for their DMSA and my damn insurance company won't cover it if it's compounded.

Thursday, February 12, 2009

Severe Dehydration Last Night

Yesterday was complete hell! At one point, I was really scared and told my husband if I passed out to give me at least 20mg of Cortef and to call 911. He had a temperature of 103.8, so he was in poor shape too. He had it must worse than me. I was ready to call 911 for him because his temperature kept climbing. haha! That would have been an interesting 911 phone call. "Yeah can you send out 2 ambulances. One for me and one for my husband? Neither of us can drive at the moment." LOL

I took my blood pressure multiple times last night and these were the results:

Sitting
109/70 HR 105
109/70 HR 119
98/74 HR 95
90/66 HR 127

Standing
83/64 HR 158
89/71 HR 141
84/57 HR 136 Shows it was irregular
84/63 HR 132 Shows it was irregular

Currently Sitting
99/70 HR 124

Currently Standing
Won't even register--I've tried about 15 times now. That's means its really low.

Clearly, I was salt wasting significantly through my sweat and pee. I was peeing more than I should have been, but I was so ill, I didn't get my meds in time. To try and recover I placed about 1 tsp of salt in 8oz of water and started chugging. My husband was like, "Are you sure you are supposed to do that". The salt tasted excellent to me, so I told him yeah. Even this morning, salt water tastes incredible like I'm eating a piece of apple pie!, so I'm going to continue with it until things balance out. Looking at my BP and HR, I'm still dehydrated!

There was an hour or so that I thought I might have died. Was it dehydration? Adrenal crisis? I'll never really know. I was having pain in my lower back, but I was also having other muscle pain too in my left leg and stomach. This was hellish. I hope I didn't pass this on to anyone.

Wednesday, February 11, 2009

I'm Sick

Oh no! My nephew gave us some terrible respiratory cold. I overslept by an hour, but when I woke up I realized why. My throat is very very swollen feeling and the cold went straight to my lungs. Before my nephew came, I thought I was fighting something off because my right tonsil was hurting and glands were swollen. Now with his sickness, my body is overloaded.

I don't know if I can handle a bad cold like this. I haven't been sick for years!

Some honey in water would feel so good right now.

I'm calling now to cancel my voice/violin lessons. I can't even take a deep breath without coughing.

Sunday, February 8, 2009

My Saturday

Yesterday we visited with some family. Once again, I felt like I was painting makeup on a dead person. Since I don't interact with a lot of people on a daily basis, when I tried talking with family, I realized how much I'm out of it. I can't seem to look people in the eye and I just can't keep my thoughts straight. My mind wanders, jumps and goes off on tangents when just trying to talk about a simple topic. To remember information, I catch myself staring off into the distance.

Afterward we went food shopping and on the way home, I crashed and had a horrific headache. I didn't drive, but just having to look out for people crossing the center line, swerving into our lane and cutting us off was enough for me! We've had so many close calls recently because of idiot drivers not paying attention to what they are doing. There have been numerous occasions where we should have been in an accident, but I had a feeling and decided to turn my head, only to see a guy passing us illegally on the right or left side of our car. I'm sure it would have been our fault some how! It's such a nightmare driving in this area. I feel like I live in a 3rd world country.

We came home, unpacked the groceries and felt a little better. I was still very tired, but then got a "second wind". However, I was able to sleep pretty well throughout the night.

Tomorrow I get to see my 3 year old nephew, so I need to be ready for a crazy day. It's supposed to be really nice, so we may go to the park. :-)

Thursday, February 5, 2009

Feel Very Fatigued Today

I drove myself to voice/violin lesson today and the drive down there has completely worn me out. I can barely keep my eyes open. I've been fighting with myself for hours now.

The funny thing is today both teachers said that I looked much better than last week. I purposely did my makeup and curled the ends of my hair. I thought I looked like a dead person trying to look alive, but obviously it worked! HAHA If they only knew how I truly felt.

Last week's lesson, I felt very crazy but tired. A little out of my mind, shaky, very sweaty and unable to focus whatsoever. I was still trying to recover from the stress of the week prior. I had started to wean off of the cortef and my body was feeling it.

I've been getting terrible headaches and I just feel like I'm moving in slow motion. Today I hope I sleep well. For how tired I feel, I can't imagine having any problems.

Tuesday, February 3, 2009

Mood Is Improvement

My mood has been a little better these past 2 days. I was really depressed and agitated last week and I'm glad that it is finally moving on. I think it was because I weaned myself off of the cortef a little faster than what's recommended. Obviously, I really need it, but I HAVE to wait. Dr. Goldstein agreed to order all of the blood work. There has been a slight change in plans. I believe I may be going to see a doctor near Scranton, PA. I may in fact cancel the appointment with the endo at the end of March. The doctor in PA is supposed to be really good with hypopituitary problems. He requires a lot of the blood work I requested from Dr. Goldstein. Since he is about 5 1/2 hours away from me, I want to make sure I have everything in order.

I just need to stop by Dr. Goldstein's office and pick up the papers when I go in for a B 12 shot next week... My legs and feet have been tingling again, which is always a sure sign for me.

Tomorrow I have the gynecologist appointment. I think I can go, but we'll have to see. /sigh