Latest Medical Update

My doctor sent me to a Rheumatologist who is at a clinic that specializes in Arthritis, Lupus, & Fibromyalgia.

Uh....why was I just sent there NOW, and not informed of this place a year ago?????

Dr. G did all the normal checking of the eyes, ears, etc. and then he proceeded on to the torture test. That's what I call it when they test your tender points.

People who have FMS have certain points on their body that are called the tender point. When a point is pressed on, it's painful. In order to get the diagnosis of FMS, a person has to exhibit 11 of the 18 tender points.

At my original exam where I was diagnosed 6 mo ago, I had 14 of the 18. Today I had all 18, followed by some silent tears when he was done (I wasn't kidding when I said it was painful!).

He said he totally agreed with the FMS diagnosis, however there are a couple of rare diseases that cover some of my symptoms, so he did order some blood work to be done to test for those.

He then talked with us for a while. We learned that 90% of people with FMS are able to work full-time and basically live a relatively normal life. I however fall into the 10% category.

Yeah me. :-/

Is there a chance my symptoms will ever improve? He said it's unlikely. He said it's more about me learning to adapt to my new "disability". I need to re-learn how to do things to make life easier and more comfortable for me.

So my blue rolling stool in the kitchen is probably a permanent fixture. My chair on wheels in the laundry, is also likey to stay.

I feel I am adapting in the home. I am pretty close to having things the way I need them for me to be. It's outside the home where I feel lost. I feel as though I have almost no independence left.

So after we left the clinic we drove to "The Scooter Store". I am now the proud owner of a 2010 candy apple red Revo Scooter.

We'll see what these latest blood tests show, but it's so good to know that we have it confirmed that it's not RA or Lupus.

My Night Cream

I have fibro related neuropathy. For anyone who has diabetic neuropathy, you will understand it when I say it's like your feet are on fire. Literally.

For me the pain is on the tops of my toes and the top of my feet. I also get it in my hands and an area of the back of my neck, but my feet and toes are by far the worst.

It hurts to wear shoes, it hurts to wear socks, and it even hurts to have them covered up when sleeping at night.

Doctors recommended over the counter creams and prescription patches & creams, but none of them worked well enough to be worth the bother of putting them on each night.

My neurologist who did all the tests to determine what my pain was from, sent a prescription to a compounding lab to make up. It is a topical cream that has been a miracle. Seriously.

I can sleep at night without waking up to intense pain and burning. I can sleep with covers on my feet so they aren't freezing. I can wear socks and it doesn't sting!

So, while some women put night cream on their face or hands....I put my on my feet. And we all look and feel better.

Who knows...I may even start dancing again. Look out Rockettes!!

Doctor, Doctor, Give Me The News...again

Today I had an appointment with a neurologist that I had seen before. He had the personality of a table lamp, only not as bright (ba-dum-bum). Neither Jay or I liked him and he totally irritated me. He was condescending and just, well, not nice.

For that reason I was looking forward to this appointment as much as I look forward to stubbing my toe during my 2am bathroom run....which is why I made Jay come with me.

You know the saying - Misery loves company.

We must have caught Dr. Irritating on a bad day during that last visit, because today he couldn't have been nicer.

I had 2 tests done:

Electromyogram (EMG) and Nerve Conduction Studies


Click on that link above to read about the tests and what they are. Make sure to not miss the best part which is on page 2: How It Is Done

Laying on the hard examining table for 45 minutes was very unpleasant, even before any testing started. I have been in a bad Fibro flare for 2 days now, which made it even more painful. My hips and shoulder blades were so sore by the time we were done, I could barely stand up.

The shocks delivered in my arms and legs were bad. Remember a time when you got an electrical shock? Maybe you plugged in a cord with a bare wire, some other fun occasion like that. Well, I had that done, but multiplied several times stronger. In some locations, it was done 10 times in a row! But putting needles deep into my muscles (especially with the flare) was just plain horrible. I even had that done in my groin! The worst place however was in my hamstrings. That had Jay begging for mercy as I nearly squeezed the life out of his fingers. By the time we were done, I was exhausted, in pain, and in tears. Even though it was painful I really was glad to have it done.

All the tests showed things were perfectly normal, which I am thrilled about. I had been told for 2 years that I have carpal tunnel, and for the past 6 mo that I have some form of neuropathy. The tests today showed that neither are true. Everything showing a normal result means I have no nerve diseases, damage, or disfunctions. Woot! Woot! The conclusion is that all of it is directly related to the Fibromyalgia.

So, the good news - no nerve disease or damage. :)

The bad news - there's nothing I can to about them. :(

Back to the good news - my toes and fingers aren't going to fall off. Can you imagine how tough typing would be with no fingers??? :)

Houston, We Have Landed

Well, I think I'm finally coming out of the clouds I've been in. I've been feeling really overwhelmed for the past couple of months and I think all the "stuff" that goes along with the holidays was just more than I was ready for.

Since getting diagnosed with Fibromyalgia a couple of months ago I feel I am finally coming to terms with it. I'll be honest enough to say that I have been really angry about it. I was happy to FINALLY have the correct diagnosis, but I was also first in denial. This was not happening to me. I would take a couple of pills, or get a shot, and be done with it....no big deal

I've always been one that believes knowledge is power. The more I read about FMS, the more I learned...and most of it, I didn't like.

For example...the part that says this is something I will have to deal with forever.

...and the part that says I need to change my lifestyle to adapt to my limited abilities.

...oh yea, and the part that says pain will be a part of my life that I will need to learn to tolerate.

Good times.

So I cried...a lot. I still do occasionally, but not nearly as often. Mostly it's out of frustration. I don't like being told I can't do something, even if it's by my own body.

I also got angry. And I yelled out "I don't want to do this anymore!", "It's not fair!" "I hate this!"and other things I won't put here.

Then I mourned what was gone, and what would never be again.

And slowly, I began to accept my new lifestyle...just as anyone with any disease or syndrome must do.

One day last week I realized how tired I was of being sad and just going through the motions of living. That's not how I wanted to live. So I sat on my bed and had a good long talk with God. I told him all my fears and frustrations and asked for guidance on how to make the most of my life.

Since that conversation I have had a sort of metamorphosis going on. I'm learning and growing and I'm finding things I'm thankful for.

I've learned that it's ok to ask for help. I don't HAVE to do everything on my own. Asking for help is still hard for me, but it's getting better...thanks to my wonderful understanding husband.

I've learned that I must embrace my new limitations and to do what I need to do to keep me from having a lot of pain. We have reorganized the kitchen so that the items I use daily (or most often) are between hips and shoulder level. No stooping, bending, or stretching to reach things and that keeps me from getting pain. I have a stool with wheels to sit on when cooking so I can avoid the pains in my back that I get from standing very long. It's all about adapting and finding what works for me.

I've learned that having Fibromyalgia can be very lonely if I don't reach out. On my "bad" flare days I really don't talk to anyone because I can't even think about anything but the pain. But on other days it gets lonely sitting down for most of the day by myself. I'm not big on tv, and I can only read so much in one day. If the guys are gone in the evening, then I'm alone at that time too. I'm learning to reach out. I have found a couple of wonderful online support groups and then of course, there's Facebook. Not only do I interact with the people I'm friends with, but there are support groups on there I enjoy as well.

I've learned that stress is bad for me. It tenses my muscles and causes me great pain. I'm learning to avoid stress and to release it. This is another tough one for me, but it is getting better.

I've also learned that some people just don't get it. Not only do they not understand Fibromyalgia, but they have chosen to not learn about it. There are those who don't even believe it's real. Let me tell you it IS very real. But, due to ignorance, ignorant comments are made, or they think you're just being lazy, or they don't understand that if you have to cancel an outing that it's not by choice. Hurtful things are said, but that goes along with the "stress" category and I just can't afford to let it get to me. I have to let it go and give it up to God. I'm learning that it's their problem - not mine, and there's nothing I can do about that.

Lastly, I've learned that life can still be great - different - but great. Sure there are things I can't do anymore, but I'm choosing to focus on the things I can do, and the positives that have come about since getting diagnosed.

The burden I had been feeling is being lifted. As I learn and grow, I'm starting to feel happiness again, and I have missed that so much. There is more to learn by me, and more research needs to be done in labs to find the root cause of this disease, so that someday a cure can be found as well.

If you want a glimpse into what having Fibromyalgia feels like, try this example...imagine you have the flu. Think about the aching you feel all over. Think about the headache. Think about how all you want to do is go to bed. Now, attach a spring-loaded clothes pin to your index finger at the top (keep thinking about the flu symptoms while you do this). Keep the clothespin on your finger for 30 minutes. What you are feeling is what the pressure point feels like. There are up to 16 pressure points and some have pain in all 16 at the same time. And the pain and flu symptoms can be, and usually are, daily.

I also encourage you to watch this video. It pretty much says it all...

The Good, The Bad, & The Ugly

I had my sleep study last night. It was one of the most bizarre experiences I have ever had...and not one I'm anxious to ever have to repeat.

After checking in last night and changing into my pjs (tshirt and yoga pants), the tech began to attach electrodes on my chest, my neck, my shoulders, my face, and even on my scalp. I also had 3 belts with monitors wrapped around my body. All the electrodes had at least one wire attached, that connected to a main "box", which transferred the information to their computers. Some electrodes had as many as 3-5 wires. To say it was all uncomfortable and awkward is an understatement.

Then they wrapped monitors on 2 of my fingers and around my ankles and feet. The final "attachment" was in my nose. You know the oxygen tube they use where there are 2 small tubes that go in your nostrils? Well, this reminded me of that, except for they were small scensors, instead of tubes.

It was explained to me that all the different attachments would record brain activity, as well as activity from my eyes (open, close, movement), arms, legs, any snoring, sleep apnea and my heart rate.

She also said "Whatever the computer can't show us, we'll see on the camera". And there it was...a futuristic looking "eye" staring right at me.

They fitted me for a c-pap device. I was told that if they saw me having episodes of sleep apnea, they would wake me up, have me put the c-pap on, and then go back to sleep (yea...as if). I immediately said a silent prayer that I wouldn't have to wear it.

By the time I was put into bed, it was 11:15pm. Since I wasn't sleepy yet at all (even thought I took my sleeping pill at 10:00), they said I could read and then let them know when I was ready to have the light off.


Less than 30 minutes later, a tech came in and said "Ok, let's put the book away and turn out the lights so we can start recording."

Uh.....I'm still not sleepy.

I ask if she could hand me my ipod out of my bag. I have relaxation music (think..spa music) and some meditation podcasts on there that I figured might help me get to sleep.

"No. Lights need to be out and no music or other distractions."

Then why did they tell me I could bring these items???

This is going to be a looooooong night.

Since I couldn't reach my phone or anything else, I had no idea what time it was, but I feel confident that I laid there for at least another hour before I started to feel sleepy.

Then the leg pain started. This happens every night. Normally I would go to the hot tub to help settle it down, but that wasn't an option obviously.

I finally fell asleep, but woke up every little bit. The bed was much more firm than my bed at home, and on a sore body, that feels like a slab of concrete. I had such pain in places like my hips, outer knees, & arms when laying on my side, and everything from my neck down was in pain if I laid on my back.

I finally couldn't take it any longer, and had to sit up to do some stretching at least. A tech came in and I found out it was only 3:30am.

Did I mention this was going to be a loooooooong night?

After using the restroom and getting a drink of water I was put back in the bed. I repeated the same routine as earlier and was very restless the rest of the night.

Again, after a while I couldn't take it, so I sat up to stretch. I thankfully found out it was 6:10am. They were going to wake me up at 6:30, so they said this was close enough. By this time I think they realized I was not going to be going back to sleep.

They removed all the electrodes and filled out some paperwork, while I went into the bathroom to wash residue from tape and glue off my face and neck.

My face looked sunburned because it's so sensitive and evidently didn't like that stuff being on it all night.

I changed my clothes and went to run a brush through my hair.

OUCH! What in the world??????

The tech said "Oh yes, you have left over glue from the electrodes we put on your scalp. You'll need to wash your hair to get that out."

Glue? Did she say - G.L.U.E?

For the record....I have since washed my hair twice and I still have glue in it. :-/

So now it's time for The Good, The Bad, & The Ugly for this experience:

THE GOOD

1. The tech never had to come in to put the c-pap on me, and she said they didn't see anything that caused them to feel it was necessary. Woohoo! No sleep apnea!

2. I was handed a coupon for a free cafeteria breakfast at the hospital. This was like the biggest gourmet breakfast buffet you could ever find at a nice restaurant! Everything from egg casserole, waffles and meats, to fruit, pastries and muffins - HUGE muffins! You tell then what you'd like and they pile it on. I only ate half of what they gave me.

THE BAD

1. The leg pain that I feel at night is almost guaranteed to be Restless Leg Syndrome, which they stated is very common in Fibromyalgia patients.

2. I won't know anything more until they send the report to my doctor, which will be in about 2 weeks. Two weeks???? Have they never heard of fax or email? Why 2 weeks?

THE UGLY

These are pictures of my hair. The areas that look red, or wet/greasy/shiny is where the glue was placed. I had over a dozen different places on my head. Nice huh?

Red at the back of the "part" and hair down behind the part (top left of picture) looks greasy

hair in bottom part of picture looks wet or greasy

I have taken it easy at home today, mostly because I have no other choice. I am very stiff and sore today. Partially from not sleeping well, and partially from sleeping on the concrete slab. The good news is that hopefully I'll be able to sleep better tonight.

Sweet dreams!

Sleep Study

I have terrible insomnia. Not only do I have trouble falling asleep, but staying asleep is equally just as hard. I first experienced trouble sleeping right after Austin was born. For a few years, it did get better, but it's now progressively gotten worse over the past 5-6 years.

I have tried EV.ERY.THING.

I have used over the counter sleeping pills, and prescription pills. The latest one does seem to be helping a little bit. I have actually gotten up to 4 hours of sleep before waking back up. That's HUGE!

So my doctor scheduled a sleep study for me. I have that tonight, and I am really getting nervous about it.

Think about this....I will have wires attached to my face and chest. I am in a room that only has 2 things in it: a bed and 1 or more cameras. I can bring an ipod and a book if I like, and a bottle of water, oh, and a favorite pillow, blanket or any other item I like to sleep with (can I bring my husband? No).

I will be alone in the room KNOWING I have strangers in a room nearby watching my every move on camera.

Talk about PRESSURE!

They will know if I have gas. They will know if I drool. They will know if I scratch my backside, and who knows what else I might do in my sleep.

And what about my nightly trip to the potty? What if they have a camera in there???

I want to wear a one piece leotard type turtleneck and some long yoga pants to sleep in. I don't want to worry about anything being flashed or falling out!

I'm guessing I will get even less sleep than normal tonight. *yawn*

Rheumatology Appointment

I met with the specialist today and have posted about it here: Climbing A Mountain

Thank you for your thoughts and prayers. I really appreciate it!!

Finally A Diagnosis

Fibromyalgia.

I've suspected this, but no doctor has ever officially diagnosed me, until today.

National Fibromyalgia Association

Click on that link if you want to know more about FM. There is no cure, however, with treatment and time, some do become pain free.

The one part that frustrates me is that for several months, I've routinely been told by doctors to NOT do any form of exercising because that would injure me more and cause more pain. Today the doctor said that angered her, because the exact opposite is true for someone with FM. NOT exercising actually makes the pain worse. argh!

I am to keep a journal that I will bring to her in 6 weeks. She wants to see exactly what I'm eating, drinking, and any light exercising I'm doing and then we'll go from there with tweaking my treatment plan if necessary.

For now, I'm on an inflammatory to help reduce swelling, and a strong muscle relaxer to try to help me sleep at night, because insomnia (which I do suffer from) does make FM worse.

Also, I'm doing a sleep study to determine the cause of my insomnia.

Endo Appt Update

Yesterday we went to the University of Iowa Clinics for an appointment with an Endocrinologist.

You can read about it here: Climbing A Mountain

No Update - But I Promise One Is Coming

At the time I'm typing this, it's Thursday night at 9:45pm. We got home from St. Louis about 8:00pm. We visited with Austin, while I iced my swollen feet. The dogs were crazy with excitement about us being home as well.

I returned a call from our Vet regarding Molly. She had a tumor removed on Tuesday and the report came back that it was cancer, but the good news that I got from the Vet is the report also said it had not spread, so that's good news.

Anyhow, now it's 9:45, and I remembered I said I'd give an update on what we found out on our trip to St. Louis. I'm sorry, but one is not coming tonight. I'm so tired I can hardly keep my eyes open, and telling all that the doctor did, and all that we learned (or didn't learn) will take more than a sentence or two, so the update will have to wait until tomorrow....and I promise I will do it tomorrow.

For now, I will just say...

Nitey, night. :)

Prayer Request

As you all know, I've been having some health issues in the past several months. Some questions have been answered, but some have not. For example, we know my main health issues I have to deal with are:

PCOS
Hashimotos Disease
Hypothyroidism
Adrenal Fatigue

Those have all been addressed and are being treated if they are able to be. However, I still have swelling and pain that keeps getting worse. I'm to the point now where it hurts to type, it hurts to walk, it hurts to do much of anything, and I am too young to even consider dealing with this forever.

Today I am 7 hrs away from home in St. Louis. Jay and I left yesterday and drove down here, as I have an appointment this morning with a specialist that came highly recommended by the NP I was seeing. He is an internist who specializes in combining eastern medicine (holistic) with western medicine to help heal the body in the best, most natural way possible. He also does specialized testings that only a couple of doctors in the US even do.

I'm not sure what all he'll be doing today, but I do know I am going to have testing done for just about every kind of food allergy there could be, and I'll also have testing for all kinds of toxins that could be "poisoning" my body. With our world today, everyone has toxins going through them, but some people are much more sensitive to them and can be made very sick by them. We'll find out if I'm one of those people and which toxin(s) are causing problems for me. We already know about the chlorine sensitivity and are using something different now for our hot tub.

We will also hopefully find out the cause of my pain. Many friends I have (who work in the health field) believe it's Fibromyalgia. If so, there is medication that can be taken to help control the pain, but from what I've been told, it never goes away completely. It's something you learn to deal with.

I'm not going to lie and say I'm 100% excited about this visit. I'm very nervous about it. I tend to be a worrier, but I am trying really hard to just go on blind faith. I do believe there is a reason I'm being led to this doctor, and I pray I find the answers we have been searching for. All I know is that the woman I was a year and a half ago, is night and day different from who I am today. Back then I was running for an hour on the elliptical and working out for at least 2 hours in a gym and with a trainer. Now, I can barely walk through the grocery store. I'd really like the other me back again.

But, I have to be honest and say that I'm scared about what I could find out today. What all could be wrong, what all I could be allergic to, and it makes me wonder just how drastically my life could change after today.

But, I'm even more scared that I may not find anything and we'll come home once again with no answers.

So I'm asking for prayers to have our questions answered please. Even though I may not like some or all of the answers I could get today, not knowing is much worse.

We'll drive home after my appointment today, so I'll try to post an update tomorrow.

My Most Recent Appointment

I had another appointment with the holistic Nurse Practitioner regarding all my thyroid and hormonal "issues" yesterday and if you'd like, you can read about what I found out here, on my other blog: Climbing A Mountain

What? No Sucker?

Yesterday, Austin & I made the annual trek to the doctors office for his athletic physical. For those of you with youngin's not in jr high/sr high school sports yet, let me fill you in. If your child plans to participate in any school sponsored sports, your child has to go to the doctor for a check-up to make sure they are healthy enough to participate in sports. This is one of the annual highlights of summer vacation. Oh, and most insurance companies don't pay for them.

I'm thinking band members should have to do the same thing. Seriously. Think about those poor kids carrying those big ol' tubas & drums in marching band. A 13 yr old with a hernia isn't going to help the school's image.

I can speak from experience on this because my Chelsea played the clarinet in concert band, but played drums in marching band. Not the cute little drum like the little drummer boy had. No, she had a big ol' base drum with handlebars that draped over her shoulders. This thing weighed more than she did so she had to lean back to keep from falling over. Plus, she was so tiny that you couldn't see her head over the top of the drum, and she couldn't see the majorette. She said she had to watch the drummers next to her to know when to move. Her drum was as big as the one in the picture. Well, it looked that big anyhow when strapped to her tiny 5'2" body. I was sure she'd be deformed by graduation, but thankfully that didn't happen.

Anyhow, back to the athletic physical. At the clinic my kids go to, there are so many kids needing them, that they bring in retired doctors who do nothing but perform athletic physicals all day long.

So Austin has to go into a room, strip down to his skivvies and put on a gown. He is so shy, that just doing that nearly has his face about to burn up from turning so red. He gets weighed and measured, blood pressure taken, and all that other stuff done by the nurse. Then in comes a strange man who (according to Austin from last years experience) asked dumb questions like what sports he plans to play or if we'll be going out for lunch when we're done here, all while he's pushing on Austin's lower belly checking for hernias and also checking other um "parts" in the extreme lower region. I likened it to the doctor asking what you're making for supper when you're in the middle of a pelvic exam. One word - awkward!

After that's over they have moms come in so the doctor can go over things with you, which sends Austin over the edge as soon as the doctor mentions things like "his scr*tum is intact nicely". Austin nearly breaks his neck trying to look anywhere but at me because we will both break into a fit of giggles due to Austin's extreme embarrassment of having to sit through this.

The doctor will sign a form and we will leave with the form to turn in at his first practice. Until hard times came upon us all, they used to hand out a free water bottle to each student, so now the end of the visit is anti-climactic. He didn't even get asked if he'd like a sucker or a sticker.

Austin made an announcement when we got in the Vue "Thank you God that I only have 2 more of these dumb physicals to go through and then never again".

Should I warn him that you have to have them if you do any college sports? Should I warn him that most employers require regular physicals that require you to turn your head and cough?

Nah, I think for now I'll just let him stay in his happy place.

Farrah Fawcett

As I'm sure some of you know by now, Farrah Fawcett died this morning from anal cancer, and it made me so sad, I cried. I've never been a fan of hers, or followed her in movies or the tabloids, so why does it bother me so much?



It goes back to about one month ago when I watched her documentary special on tv. She talked about her cancer, her acceptance of it and her faith. I have to say she totally inspired me.



I used to think of her a this 1970's trashy bimbo from Charlies Angel who evidentally liked showing her chest to everyone, and perhaps she was that way then, but she was now very down to earth, spritual, family oriented, so sweet with her elderly father, a loving mother, and a total pillar of strength with how she dealt with her cancer. She had more courage in her pinky than I do in my entire body.

It made me stand back and take a look at myself. So I have some health issues...so what? Let's focus on the big picture....I'm not dying! At the time of the movie she was dying. And she knew it, and yet she greeted every day with a smile and with courage no matter how weak she was getting.



A couple of comments she made in the movie really stuck with me:



*If you do what you've always done, why would expect to wake up with different results?



*If you want things to change, don't sit around waiting for someone else to change them. YOU make the change.





*I ask myself.....Did I do my best today?





*Don't give up, no matter what they say to you, keep fighting.





I have printed out her picture and taped it by my computer, and included these sayings. She has become my inspiration. To see her struggle and be in such great pain, and yet go on without complaining and whining and while still having a smile on her face is what I aspire to as I continue to improve my health. No whining, only gratefulness that you have another day and another chance to do your best.


While I'm sad for her that she lost this battle, I am happy to know she is at peace and no longer in pain, and I know she greeted the heavenly gates while still wearing a smile.



God bless Farrahs family.

Doctors! *Sigh*

I have a doctor I see, or should I say "tolerate" every month to check my blood pressure. It's been doing great, so I was happy it stayed down while I was there.

Today is the first time in the past 2 months that he even acknowledged that I'm on herbal remedies and supplements. I take like 15 of them...it's hard to miss a list like that in my chart. Here's what left me honestly speechless:

*He never asked who suggested I take these

*He never asked if I was being regulated to see if they were doing ok
*He never asked why I was taking any of them

*He never asked how long I'd been on them or if I planned to stop

Do you know what his only question was? Get ready for this one:

"Some of these I've never heard of. They are all legal, correct?"

The other reason I was there was to get a refill prescription of my sleep meds. I have terrible insomnia, but I think he thinks I'm making it up.

Dr: Well you look wide awake and you're well groomed with your hair and make-up all done up nicely, so I don't know that your insomnia is too bad.

Me: That's because I took the little blue pill last night. (I wanted to add "duh!", but decided that probably wouldn't help me any. But a question did come to mind....since when does insomnia get proven by not putting on make-up?)

Dr: Well, if I were to give you a supply of 30 tablets, I would recommend you take one every 3 to 4 days and just rest in bed inbetween those if you can't sleep well (did he really just say that?) and I'll see you back in 6 months to see if you were in need of a refill.

Me: I'm sorry, I know my math is bad, but if I take 1 every 3 days and I have 30 pills, isn't that only about 3 months worth? What do I do for the other 3 months?

Dr: (no response - he doesn't even look up from my file)

Dr: You know, I'm just not convinced you are in need of a sleep aid any more at this time.

*I start to feel a little bit of panic rising in me. I have to have something help me sleep. Otherwise I'm up until about 3:00 in the morning. It's impossible to function when you are already dealing with diseases and health issues that rob you of energy when you are also exhausted from not sleeping*

Me: Ok, here's the deal. It's PMS week for me and my husband and son really don't want to have to deal with me if I'm also not getting any sleep. I'm just sayin'.

Dr: (he sat and looked at me for a couple of seconds) Here's a script for 14 tablets with one refill.

was that really so hard?

Guard Your Health

Did you ever watch Little House On The Prairie? Remember Doc Baker? Remember how the residents of Walnut Grove could go to him any time and he'd make time for them. And no matter what he had on his mind, whoever was seeing him, was made to feel like they were the most important patient he ever had. He never kept them waiting and he was always friendly and really cared about those he took care of.

Are there any Doc Bakers left in this world? Or are they as extinct as the Saber Tooth Tiger? I know I certainly haven't found one lately.

In my never ending quest to find someone who can at least pretend they care about me and my well-being, I decided to give my current doctor one more chance, because the insomnia medicine he prescribed me wasn't working and I want so desperately to sleep! But as the saying goes "Three strikes and you're out!" He's up to two strikes, but I went in with an open mind.

Things didn't start well. He kept me waiting for 53 minutes past my appointment time. Helloooooo...your time is not more valuable than mine. When he did finally come in, there was no explanation or even an apology as to why I had been kept in this tiny room, without even so much as a magazine to look at.

When I was first taken to the room, the nurse went over things with me. Charts are all now computerized and the screen was turned enough that I could see what it said about me. My recent ER visit was listed there. All the medical conditions the lady I see in Des Moines has diagnosed me with, and all the new medications I am now on.

Do you know this guy never even mentioned a single one of any of those items? He never clicked on the link to see why I was in the ER. He never asked how I came to be diagnosed with what was listed, and he never asked why I was on any new meds and who prescribed them to me.

As he scanned my chart he said "OK, so when we tested you, your blood sugar was elevated which indicates pre-diabetes, does that concern you?" I wanted to say "If you'd look at my chart and see I was diagnosed with insulin resistance you'd know my answer to that is NO, since my blood sugar really isn't up." But all I said was "Nope. Not really. I'm taking care of it." He didn't ask how. All he said was "ok, good."

Then he said "You're thyroid numbers look great." Um excuse me? Do you see the screen? Hypothyroidism and Hashimotos alone indicates major thyroid problems, plus I'm on 3 different thyroid related meds!!

The clincher was when he said "Well then except for the insomnia problem, I'd say you're pretty healthy. Anything else I can do for you?" I looked at him, stunned. What planet are you on?

Six whole minutes had passed since he came in the room and that included time for him to do dictation on our visit.

Six minutes.

I stood and said "No. You've done enough thanks."

Strike three.

In my opinion, this mans lack of even paying attention to my chart could have been disastrous, if not dangerous! I have done enough reading and researching on the Internet and in books to have at least a little grasp on what's good and not good for my body, but think of an elderly person putting all their trust in this person...when he's so clueless about what's going on with them. That's scary.

I am now on the search again for the elusive Doc Baker.

Yion Wif Azma

All 3 of my children have asthma. Austin had his first "episode" (they don't call them attacks anymore) when he was 4 months old. He would cough and gag so hard that he'd vomit, yet by the time we'd get to the ER, he'd be fine. Doctors looked at us like we were nuts and over protective. We even had one who gave me a little pat on the back and said "You know mom, you don't need to bring him in for every sniffle or tickle in his throat, he'll be fine. I was so frustrated.
After he was finally diagnosed, I was sad to learn he had asthma, but I was also relieved to know we weren't considered crazy or neurotic anymore, and he would get the help he needed.

Chelsea had her first episode when she was in Kindergarten, and Ashley had her first episode 2 weeks after Chelsea. At that point, I decided that if I'm being "forced" into being the mom of 3 asthmatics, I was going to learn all I could about it and that's what I set out to do. I devoured books and read articles. I joined a nationwide mothers of asthmatics support group.

The hardest part was during a flare-up. I remember one time in particular Chelsea was coughing so bad she had tears running down her eyes. She looked up at me and whispered "Mommy, am I going to die?"

One of the best things I ever found was a book called "The Lion Who Had Asthma" by Jonathon London. Or, as Austin soon called it "Yion Wif Azma". Here is part of a great review about the book:

In the story Sean pretends to be a Lion going about normal stalking activities in the jungle. When he suffers an asthma attack and becomes weakened he is no longer able to perform his boyish and lion-like activities with a lion's strength. The coughing and wheezing frighten Sean and the courage of the Lion vanishes as Sean lies down and is confined to his nebulizer.

Sean's mother offers him a new avenue to explore with his imagination when she suggests he be a jet pilot. The whirring of the machine and the mask on his face provide realistic props for Sean's visualization. As Sean's bronchial tubes dilate and more oxygen is able to enter his lungs, the Lion in Sean returns and once again Sean's imagination takes him away to his jungle adventures. This book would be particularly valuable to read to young children. They would understand and identify with Sean making believe he is a lion or a hippo in the jungle and then as a jet pilot. The text introduces the language of the special illness that Sean has. Words like asthma, breathe, cough and wheeze. The language also addresses the emotions that Sean goes through like fear, hurt, and the use of a lion obviously demonstrates the courage that Sean displays. The language is simple enough too for older children to read independently and introduces text challenges like the sound effects of the machine (nebulizer) and the lion - Rroooarrr, Zooom, Grrrrrrrrowwl.

When I bought this book, I read it to Austin during one of his nebulizer treatments. Normally, neb treatments were a battle. He didn't like being confined. He didn't like the mask stuck on his face, and he didn't like the steam from the medicine because he knew it'd make him cough (which is what it was supposed to do as his tubes opened). When I read the book the first time, he just sat there. Afterwards he said "gin mama" (again mama), so we read it again.

The "Yion" book became our constant companion during neb treatments, and as he got older he began to act out the story. He'd pretend to be the "aiopane" (airplane) flying through the "cowds" (clouds), and when he was done, he'd give a roar like a lion and then we'd both clap.

One time when he had a really bad episode, we took him to the ER and as they tried to do an extra strong treatment on him he cried "Yion, Yion!" and I told the nurse he wanted his Lion book. I grabbed it from my bag and they were amazed at how quickly he settled down.

After that, I ordered a few copies and gave one to the ER, a couple to pediatrics and one to the asthma specialists office. They thought I was being sweet, but actually I was covering my hiney in case we ever forgot to bring our own "Yion" book along. ha!

If you have any young children with asthma, or know someone who has, I really recommend this book. It's entertaining, yet written in a way that children can begin to understand what's going on, and that it's ok to be scared sometimes. We still have our copy on the shelf. It's now a part of our history and I just can't bring myself to part with it.

Now that my kids are older, they pop an inhaler in their pocket or purse and go about their day. However, not long ago Ashley asked about the "Lion book" and if we still had it. She works after classes at an elementary school and has obtained some babysitting jobs outside of that with some of the kids. One of those kids has asthma and she explained the book to the mom and she wanted to take the book to show her. It brings a smile to my face to know the "Yion" can still help kids with their roar.

Let's Try This Again

A few months ago I started a blog to help keep me motivated regarding my weight loss. Little did I know at that time, what challenges would be coming down the road.

Now I know all those challenges, which I recently wrote about regarding my thyroid & hormone issues, plus other things. Weight loss isn't my goal right now. Getting healthy is. Weight loss from what I've been told may not even happen for a while...if ever. At least until we get things headed in the right direction.

Each day I log in to the dashboard here at Blogger, I see the weight loss blog and it haunts me. I feel guilty that I haven't added to it, but there's been nothing to add. And now that I know I won't be able to add to it for a while, I just don't need the guilt, ya know?

So I deleted that blog. The guilt is gone.

My NP I'm seeing wants me to keep a journal of what we do and how I'm feeling, but I don't want to do that here. This blog is about more important things like useless facts and trivia. It can't be bothered with serious things like test results, health and well being. So, you guessed it....I've started a 2nd blog. I figured my mom & dad would at least probably want to know how the treatments are going. :)

Here's the address: http://climbingamountaintobetterhealth.blogspot.com/

You're welcome to follow it. Just don't expect anything exciting, unless you find how many times I napped today exciting. If anyone reads it and has experienced any of what I'm going through, I would LOVE your input! I will also be adding links to sites or blogs that I feel are helpful in this journey as well.

Hope to see you on the mountain!

My Test Results

I met with the Nurse Practioner again yesterday to discuss all my test results. I had urine tests, saliva tests & 9 vials of blood tests to go over. I was there for 3 hours and walked out frustrated (by medical doctors that I had begged for help and was ignored) and overwhelmed. But, I now have the answers I have been searching for, whether I like them or not.

In a nutshell, here's what the test results show I have or is "wrong" with me (sit down and grab something to drink...it's a long list - ha):

Peri-menopausal
Hashimoto’s Disease {Hypothyroidism}
Vitamin B6 & B12 deficient (bordering critical stage)
Vitamin D deficient (VERY critical stage)
SAD (goes along with the Vit D deficiency)
Overly estrogen dominant
Way too low progesterone
Overly low cortisol in the mornings
Sex hormone is basically non-functioning (no comment -ha)
Insulin Resistant (which = very low metabolism)
Adrenal Fatigue
PCOS

Other than all that, I'm in great shape. LOL

I was given the "honor" of breaking 2 records in her office. #1 Having the most test results to come back in the moderate/severe category of any one person, and #2 Having the lowest Vitamin D reading they had ever seen before.

I'm on numerous all natural supplements and a thyroid medication, and I'm to follow the Insulin Resistant Eating plan. For the SAD I tried to get her to require we go south each winter, but she would only suggest a lamp. :P

I cried several times during the appt due to the frustration that I have spent the past few years trying to get doctors to help me who either said "eat less, exercise more" or my personal favorite "your thyroid is fine" (when I KNEW it wasn't).

I asked her if she thought that once we got all this regulated, would I have a chance to lose weight again. Here's her response:

"I'm going to be honest with you Dena. You have a going on. I am going to work hard to try to get you feeling better for starters. This is not normal, and what you are feeling is not normal and no matter what any doctor has told you in the past, you do not have to live like this or live with feeling like this. Can I get you to a point where you will lose weight? I believe so. Will we be able to get you into a normal weight range? I don't know. As much as you have going on, it's going to be how well your body responds to treatment. Most people do great, but there are some who don't respond well. We won't know until we get going with you. However, I am optimistic."

My fingers are crossed.

My Lab Tests

I had a friend call me this past weekend and ask "So whatever happened with you and that lady you saw other than the foot bath fiasco?"

Oh, did I forget to fill you in on that? Sorry. I bet you've been sitting on the edge of your seats, right? Well, anyhow...here's the run-down, the down-low, & the low-down on what Ms. C feels is the issue with me. Well, medically anyhow, we won't even get into the whole psychological part.

In case you don't remember why I was going to see Ms. C, here's a brief update:

In Jan 2005 I decided to lose my leftover baby weight, which seemed appropriate since my baby was getting closer to being a teenager. I lost some and then added in exercise and lost some more. Joined a gym and lost some more. Then it all stopped. I worked out (hard) with a trainer for over 1 year and didn't lose another ounce. I was working out for 3 hours a day, 6 days a week and got nuthin'. Doctors were no help as they all just said "Well losing weight is a lot of work". I KNEW that! As soon as I stopped my 3 hr work-outs, the weight started to come back on. I was beyond frustrated and found other symptoms arising, including severe fatigue (some days its all I can do to get out of bed), horrible headaches & body aches, etc. My sister mentioned someone she knew who went to Ms. C who deals with womens hormonal issues among other things, and uses all natural remedies to help with them. So as a last ditch effort to find someone who would help me, I set up an appointment.

Before seeing Ms. C I had a 10 page questionaire to fill-out. It seriously asked E.V.E.R.Y.T.H. I.N.G. I found myself blushing when I was sitting alone at the dining room table filling it out.

After my footbath, Ms. C took me to her office and we talked, and we talked, and we talked. We were in there for over an hour. She asked me questions about everything I had filled out on those forms and she went into great detail about every one of them. Going into such detail regarding my sex life with a stranger is just well, awkward, and I'm sure she noticed me squirming in my seat. LOL

Once we got all done she said "Well it's obvious to me, as should be to others that you have some serious hormonal imbalances and...brace yourself , but your also peri-menopausal. I laughed, because I already figured that part. She told me that every symptom I listed suggests hormones that are beyond messed up, and the first clue for doctors should have been all the fertility issues and other female issues I've had since in my 20's.

She started explaining that when you have imbalance "A" you get the following symptoms. When you have imbalance "B" you these symptoms, and so on. I sat there nodding my head thinking "Oh my gosh - that's ME! that's ME! So I'm not making these things up! They aren't all in my head!"

It felt so good to have someone listen to me.
It felt so good to have someone say they were going to do what they could to help me.
and mostly... It felt so good to have someone believe me.

She said "If you're working out that hard day after day and not losing anything, that tells you somethings not working right." I told her that's what I've been trying to tell my doctors and she shook her head and said "And they wonder why people are losing faith in the medical establishment?"

So, for starters she said that while she can tell I have parts of me that aren't functioning properly and most likely vitamin/mineral deficiences, we need to pinpoint exactly what those things are, and how severly they are deficient. That means tests...lots and lots of tests.

Urine test - I have to restrict my fluid intake to just 24 ounces in a 24 hour period, because they wanted the urine very concentrated. I'm doing this test tomorrow, and considering I drink 4 times that much in a day, it is going to be a looooong day.

Blood tests - I had 9 tubes of blood taken out. NINE! When I saw the lab tech setting all those tubes up, I was thinking I may need a transfusion after I have my own blood removed. LOL

Saliva test - This one grossed me out, not going to lie. I can't stand people spitting (like when you see them spitting on the ground), yuck! For this you have a small tube you have to spit saliva into, and you have to get it 3/4 full. Not only that, you have 4 tubes and you do them throughout the day. Nasty. I was so glad to have that one done.

I go back in a couple of weeks and will hear the results of all my tests. While I'm nervous to hear what all could possibly be wrong, I'm also excited to know that maybe, just maybe we've finally rounded the corner and heading down the path to good health.