One Year Anniversary

This week it was one year ago that I finally learned I had Fibromyalgia. One the one hand, I remember crying with relief that someone finally believed me and believed I was really suffering. On the other hand, I was scared to death because I had no clue what that meant for me, or my future.

I had my diagnosis confirmed a few weeks later by a Rheumatologist. It was then that I also learned that I was one of the 10% who had a severe form of it. I've always been an all-or-nothing kind of girl, and that continues even when I'm sick. lol

It took a few more months of trial and (some scary) errors & ER visits to figure out if there were any medications out there to help me.

Even though I hate this illness with every fiber of my being, I have learned some valuable lessons because of it. The biggest things I've learned is that #1 I'm a lot stronger than I ever thought I could be. There were times I would cry out on my bed shouting "God please, I am not this strong. I can't do this" and he'd let me cry it out and show me that, yes I could, even if I didn't want to.

The #2 thing I learned is that I'm ok, just the way I am with all my flaws, extra pounds, and weaknesses. God loves me, my family loves me, and that's all that really truly matters. I'm not hung up anymore on what people think.

Ok, wait, that's not entirely true. I still have a very big complex about being seen with my cane, or even worse, with my scooter. People always want to ask questions, and after you explain what's going on, they always sweetly give you that "aaww you poor thing" look. I hate that look. LOL So yes, I guess I am still vain when it comes to my cane and scooter.

I've learned more about Fibromyalgia in the past year than I ever thought could be possible. I spent a long, agonizing winter last year with my body wracked with pain, and I gained a determination that this year I was not going down without a fight.

I began to read and read and all the research pointed to people benefiting from going gluten-free. My food allergies showed I had an allergy to wheat and gluten, so why not give it a shot.

Let me just say that going gluten-free is not for the faint of heart. It's hard. No really...it's hard! I still miss a good turkey burger on an onion bun. I miss pizza with a thick crisp/chewy crust. I miss bread. Good, soft, multi-grain bread. I miss it all very much. However, if it will help, than it's a sacrifice I have to be willing to make.

It's meant I have had to start cooking. Many days my poor kitchen looks like a bomb went off in it. There's food splattered everywhere, and every single pot, pan, bowl, and spoon we have is piled high in the sink, and somehow I always seem to end up with a scalp full of oregano, even on a day I was making cookies. It has also meant my poor husband and son are having to pay the price as my taste testers, and it has my daughters glad they got out when they did.

Something else I recently started doing is taking an online Fibromyalgia self-help course teaching ways to cope with the different symptoms you experience, and oh my goodness it was such a help to me. I learned tips and tricks that I never would have imagined. I am now a member of their alumni group (with the benefits of a message board and open chat nights), and have signed up for their advanced course. When you do the course you have a moderator and a (MIT) moderator in training. After I finish all the courses, I am interested in paying what I've learned forward and perhaps becoming an MIT and then a Moderator. But that's a long ways off.

For now, I'm content to keep working on what I've learned not only in class, but throughout this past year. I'm looking ahead and praying that I will be blessed with more successes and more lessons to learn....not that I have all these learned yet. ha

No, I'm not thankful I got sick, but I do feel blessed because of it. If that makes sense. I'm also re-learning something I learned long ago...laughter really is the best medicine!

Out Of The Comfort Zone

My journey through and since getting my Fibromyalgia diagnosis has honestly been one of the hardest things I've ever had to go through. It's made me look deep inside myself and go to places I didn't want to go...places I still don't like going. Places that are humbling, insightful, and sometimes, even terrifying.

I don't like change, never have. So when all the physical and emotional changes started taking place, I recoiled and my zest for life faded. I felt I was a burden and that was something I definitely didn't want to be. I also didn't want the stares and questions. That meant admitting something was wrong with me.

When it even hurts to blink, you have a lot of time to just sit. You can only read so many books, and watch so much tv, so you have a lot of time to just sit and think...and feel. That's that uncomfortable place that forces you to learn some hard lessons.

I've learned that people that I thought would be there for me, aren't, and that hurts, badly. However, some people have come forward that I never would have expected, and they have become such blessings to me.

I've lost friends, a lot of friends that I thought I could always count on. Either they didn't understand, or it made them too uncomfortable, or they just lost interest because there are many things I can't do anymore. That too has hurt so much, and I've shed many tears over the lonliness I've felt. I've come to realize however, that fair-weather friends are just not true friends. They are a negative that I just don't need in my life, and while somedays I still miss them, I don't miss their thinking. My true friends are still very much there for me, and I love them so much.

I've learned that my husband and my children love me. I mean really, completely and totally love me. I've watched my husband fight with doctors and insurance agents on my behalf. He laughs with me, cries with me, and prays for me. My son has matured before my eyes to become this compassionate caring young man who will come lay beside me in bed and just talk when he knows I can't get up. My daughters call to see if they can run any errands for me, or just to see how I'm doing. One even said "Mom, you probably already know this, but I want you to know that I say a prayer for you every day." How can you top that? What else could I ever want?

I've also learned that I miss the old me. The me that I now know will never come back. Accepting that is still my biggest struggle. No matter what, that me can't come back. This experience has changed me in a way that I can't ever be the person I used to be. I've learned too much.

I've learned that it's ok for me to feel this pain without feeling guilty about it. I know there are others who are suffering even more pain than I am, and I know this will not kill me. However, that does not minimize the very real intense pain that I do feel on a daily basis, and I don't have to feel guilty to admit I am hurting.

But believe it or not, I'm now thankful for my diagnosis. Even though I have been pulled out of my comfort zone, even though I have shed more tears than I thought possible, and even though there are many dark lonely days, there is also love and laughter, and a new found pride in small accomplishments.

I have also learned that even though there have been days when I have cried and screamed "I'm not strong enough for all of this", I am. I am so much stronger than I ever knew.

The new me is starting to emerge. I am not to the point of accepting her yet, but at least now I don't scream at her anymore to go away. I don't despise the image I see in the mirror, even if she does look as if she's aged 20 yrs. I am not ashamed to use my cane or ride my scooter when I have to...although using it at the fair for the first time was one of those horrible, tear-filled, terrifying times I mentioned.

I'm not done learning by any means. I know I have a lot more to learn, and to accept. Along the way I expect to learn more positive things and maybe, just maybe, someday I'll be able to look back and give thanks that I've been taken out of my comfort zone in this way. Maybe. :)

Looking Forward

My biggest struggles with having Fibromyalgia (besides the obvious physical ones) are accepting that the old me is gone forever. She is never coming back and that's tough to accept. I look at pictures of me from a couple of years ago and I see that FM has caused me to age and gain back the weight I worked so hard to lose. I don't see someone whose hair has lost all it's curls and shine. I don't see someone who looks tired and worn. I see a sparkle in her eyes.

I miss her. A  lot.

I read a blog that had a great message that I must remind myself of daily:

My message to my new member was this: Until you learn to let go of who you were, and accept who you currently are, you will not be able to move forward. You will be stuck trying to get back to a “you” your body is no longer capable of being. By continually looking back, you are fostering frustration and anger rather than acceptance and possibility. Examine who you are now, come to terms with it, and then make a plan to move forward.

I need to say good-bye to the old me and let her go, so I can truly move forward. That's not going to be easy, but it's one of those things I have to do.

Ready For The Weekend!

Whew...what a week!

First, Austin had the stomach flu from h-e-double hockey sticks. The poor kid was so crazy sick that just today he finally went back to school, even though he still felt tired and still had a headache. Somehow, amazingly, neither Jay or I got it. I think it was due to all the prayers we said...and the fact that if Austin even looked at something, it was sprayed with Lysol. LOL

Then our internet adapter broke. Yes, I do have internet on my phone, but I'm still struggling with the whole touch screen thing and typing on it is much slower than typing on my laptop. The good news is that I read more this week than I have in the past month, and I got some really good menu ideas for the summer.

We received our new wireless adapter today, but it wouldn't allow the installation process to go through. With the way the rest of this week has gone, I wasn't surprised. lol I called Customer Service and may I say that "Rebecca" was so patient and helpful. Within about 20 minutes I had internet again and I was smiling!

Then I got a pretty bad fibro-flare on Wednesday. I was really bummed by it because I had actually felt really good for a few days. I was able to take care of Austin, keep the house up, and run errands...and I still had energy to cook supper, and do the laundry. It felt great. Then dumb ol' reality had to come back and smack me upside the head. By today it's getting better again slowly, so I'm going to attempt camping with the guys this weekend. I'm keeping my fingers crossed!

Still no new well. We're on week 72 with no water. Ok that's a slight exaggeration yes. It's only been a little over a couple of weeks, and technically we do have water (in a giant barrel), but well, it's just not the same and I'm taking a moment to whine about it. :-p

Well there you have it...our crazy week. It's one of those weeks that I am so glad to have behind us. Bring on the weekend!

FMS Awareness Day

Today is Fibromyallgia Awareness Day. If you don't know much about FMS, please go here for a lot of great information:

National Fibromyalgia Association. 

If you know someone afflicted with Fibromyalgia, please give them gentle hugs of support today. Knowing someone cares can make a good day great, and it can be just enough to make a bad day better.

Soft, gentle hugs are going out today to all my friends and fellow FMS sufferers. Never give up hope that someday there will be a cure.

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??? :)

New Kind Of Health Care Reform?

This has nothing to do with Obama's plan, so don't worry, I'm not going to go gettin' all political on you or anything like that. lol

My plan has to do with the idea that we start weeding out some of the knuckle-headed doctors that are out there. Here's my plan...

Every person that sees a doctor (regular or specialty) is given a survey slip that they fill out before they leave (anonymously of course). The slips go into a locked box that can only be opened by the powers that be (not sure who that would be yet, although I'm currently not working LOL).

Every 6 mo the slips are read by those powers that be. If the majority of people gave the doctor a favorable review regarding professionalism and bedside manner, great. If the majority gave him/her a negative review he/she is on probation. At the end of the next 6 mo, if the reviews have greatly improved and are now positive, great. If not..."buh-bye doctor. I hear they are hiring at McDonalds."

Think about it, the rest of us have reviews by our bosses, correct? While we are technically not the bosses of the doctors, we are the ones who interact with them during business hours, not their bosses. If I continually have bad reviews, do you think I'll have job security? No. So why should they be exempt from that, especially when they are dealing with people's lives?

On top of that, you should be able to fill out a form (or write on a piece of paper), and send it in if there is an especially caring phone call or an error made over the phone. Or if there is a positive or negative through some other venue, like prescriptions, etc., those should also go in with all the reviews.

***************************************

So you may be wondering what could have brought me to this idea (or maybe not, but humor me here).

I had an appointment with a specialist earlier this week. His bedside manner was less than friendly, but not rude. He kept asking me the same questions over and over, as if he didn't believe that I was telling the truth or to see if I was...I don't know...forgetful? And he kept leaving the room. Seriously he said "I'll be right back" at least 5 times. Jay suggested that maybe he had gas and was just being polite. LOL

The Dr asked who diagnosed me with Fibromyalgia. I said that my primary doctor first diagnosed it, and then she sent me to a specialist for confirmation. I also said I had no clue what that doctors name was, but that he was a Rheumatologist. He said "Was it Dr. X?" I said "Could be, I know I have heard of that doctor". He said "He doesn't believe in Fibromyalgia" and then he paused as he got a grin on his face.

{ Was that sarcasm I just heard in his voice? And what's up with the whole Cheshire cat grin on your face? What are you implying....you think I'm kidding about this? Oh Mr, I've dealt with enough Drs over the past 18mo - don't even go there.}

I gave Jay the "I'm going to have to hit him" look, and he smiled back knowing I was kidding but that I wished I wasn't.

The doctor decided to schedule me for some electro-something-or-other test, and he put me on 2 different supplements. We drove to the Pharmacy, couldn't find what we were looking for, got help, and then found that the Pharmacist was confused by what the Dr wrote.

The one supplement comes in 50mg tablets. The doctor wrote down that he wanted me to take 300mg twice a day. That's 12 pills! On the bottle it says to take 3 tablets, one with each meal. 3 is a whole lot different than 12, and the Pharmacist said "I've never heard of anyone taking that much, but, well, what my recommendation is, is that you call your doctor back and double check that dosage."

I called the doctor and the nurse said "He said he thought the tablets came in higher dosages, so go ahead and just take the 3 a day like it recommends."

Wait - he thought? He didn't know for sure and he didn't check? So if the Pharmacist wouldn't have alerted us, I could have taken the wrong dosage? More than double or triple the dosage? Sure, it's "only" a supplement. Not a huge deal, but what if it were a prescription medication? Taking the wrong dosage could have life threatening consequences.

Definite negative review in my book.

Yes, everyone makes mistakes. However, with my plan, if you see several people who have gotten the wrong medications or wrong dosages, that's grounds for probation.

Just my humble opinion. :)

Funnies

This one is totally me!
Just ask Jay! LOL
















































I guess I am happy for the pain. LOL

Working To Embrace The "New" Me

When I was diagnosed with Fibromyalgia this past Fall, I was at first so thankful to finally have a diagnosis, but also scared for what the future held.

I was started on Lyrica, which is the only medicine approved for FM that I am able to take (due to reactions with the others). I was desperate for pain relief and prayed this would would work for me. Due to concerns about reactions, I was started slowly, with just 1 pill a day.

As time passed and intense pain remained constant, the amount of pills I took daily increase...2...3...4...5...6. Six is the maximum number allowed.

I have been on 6 pills a day now for a little over a week. One of my concerns (other than reactions) was weight gain. I've read that many people gain significant amounts of weight when taking Lyrica. So far that hasn't been a problem - Praise God!

While it's still too early to tell how effective the 6 pills daily will be (it can take up to a month to know that for sure), I have noticed my pain level does seem to have decreased some.

The pain I've had in my feet for over a year is almost completely gone. I notice the pain seems more "trunk" generalized and not spread to my limbs (although I have had temporary flares to one spot or another - for example, yesterday it felt as though my left thumb was broken. Today, it's fine.).

I still have the "hot poker" stabs of pain, but those are in the 2 spots where my pain began almost a year ago. I don't know if I ever completely expect those to go away, but they do seem to be decreasing in how often I get them, and how long they last.

So, while I feel there have been positives, I still have some concerns, such as if I am already at the maximum amount of medication allowed, and I am only 46....what happens when I'm 56, 66, 76, and God willing...beyond that.

I spent a lot of my "down" time doing research on the internet. I have read over different exercise options that will work, and different food options, as well as supplements. What I have decided to act upon is what I feel is right for me, I'm not suggesting this would be right for anyone else.

I found overwhelming evidence that gluten and sugar are two main things that those with any type of chronic pain should eliminate. Studies have shown that many people have dramatically improved their quality of life, and decreased their amount of pain by doing this.

So, I decided to embark on a gluten-free, sugar-free lifestyle. I had originally decided this a month or so ago, but it is pretty restrictive and I didn't wholeheartedly embrace it. But as the number of Lyricas I was taking increased, I just felt more and more drawn to it.

I'm learning that going GF is not as easy as substituting let's say rice flour for whole wheat. You have to adjust and/or add other things with the flour to get the consistency right, or something. That's going to involve more research than I am prepared for at the moment, so I again got on the internet and found GF/SF cookbooks and ordered 3 of them.

It's only been a week - and one of the WORST weeks I could have decided to embark on this journey. AF was here. Uh, hello....bad timing there girlie! Well, it has taught me that if I can survive that week, then I can definitely commit to this 100%. It has also taught me that I am so grateful for sugar-free chocolates that saw me through those darkest hours. LOL

I'm having to cook now way more than I ever figured I would do, or even care to. But, when you have pain as your motivation, it seems easier to get started.

I have to admit that I have been very pleasantly surprised so far. The recipes have been great! I made a lasagna last night and both Jay and Austin took just a small amount, and both went back for more.

I also found a pre-made pizza crust that I love, love, love! I can honestly say that I will never miss eating a crappy frozen diet pizza again, or any other store bought frozen pizza. I don't believe I'll even miss ordered pizza. It was that good!

There are other lifestyle changes that I'll write about later. I'm sure your butts are already numb from reading this long (sorry for the rambling, but I guess you're used to that from me by now...ha!).

Have an awesome day! It's a blizzard outside, so I'm going to go make up some recipes to freeze. :)

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...

Doctor, Doctor Give Me The News

I had a doctor appointment yesterday for the fibro and it went pretty well. She asked how things were going and how I'd been feeling. I probably should have warned her that it was PMS week, because all I got out was "It's been a challenge" and I broke into tears. She was so sweet though and we talked in more detail about what I meant by "challenge".

I explained that it is more about the frustration I feel than anything. 18 mo ago, I was working out in a gym at least 3 times a week, and working with a trainer. I was also running on the elliptical for an hour a day. Now there are days when I am doing good to be able to walk from one end of my house to the other....and that's so frustrating!

I told her that Christmas shopping hasn't even been that much fun this year because I go to the mall walk through part of one store and then have to go out in the middle and sit down for a while. Also, I used to walk so fast that Jay would complain about it, now I get passed by elderly people with the walkers on wheels.

The last thing I said while having tears running down my face was "mostly I just feel like I am too young to feel this old".

This sweet doctor of mine (who I am now convinced was hand picked for me) asked if I was a Christian woman. When I said yes, she said "As women, wives, and mothers, we tend to run on ultra-speed all the time. We have a million things we feel we must do, and rarely do we ever ask for help. Did you ever think that perhaps God is telling you it's time to slow down and enjoy what's around you instead of always looking ahead to what you need to do next. When your in pain and you have to sit down, look around. Maybe there is something He wants you to see...something you would have otherwise missed. When you're walking slowly through a store, listen to the songs playing over the speakers. Maybe He knows one of your favorites is playing. I guess what I'm saying Dena is, maybe God's trying to help teach you patience."

Through my tears I started to laugh and said "Well He should know me well enough to know that I don't have the patience for patience.", which gave her a good laugh too.

So, I'm going to take her advice and take time to smell the roses, and while I do that I'm going to say a prayer of thanks for my dear sweet Dr. B.

Spontaneous Fun

One thing I've learned since getting my Fibro diagnosis is that for the most part, I have had to accept the fact that I can't really be spontaneous anymore. I have to plan my activities to ensure I can be as pain-free as possible to be able to enjoy them.

Fortunately, I can still get a rare glimpse at spontaneous fun and I love it! I just had an example of one of those rare times yesterday.

Jay and Austin went to the ISU basketball game with some friends, so I went to get some groceries.

While driving, Chelsea called me and asked what I was doing. Turned out she was going to get groceries too, so we decided to go together.

Then we came up with a great idea...to go out for lunch together first.

That was followed by another great idea...let's call Ashley to see if she wants to come join us (her college is only 30 min away, so not too far).

Thankfully, Ashley had time before she had dance practice, so she did come join us at Applebees. This picture shows Chelsea sitting backwards in the Vue, while we waited for Ashley to arrive (I'd be stuck if I tried sitting like that LOL).

Afterwards we headed to the Wally World super center and they rode together. When they pulled into the parking spot next to me, they had the windows down in the car. The radio was cranked and they were singing at the top of their lungs and dancing wildly. It was so funny, and this picture doesn't even come close to doing it justice. I honestly haven't laughed that hard in a long time! Even the workers who were taking a smoke break around the side of the building were laughing.

By the time we were done with our shopping, I was in intense pain, but all the laughter and fun made it oh sooooo worth it!

I am so thankful for that spontaneous afternoon.

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!

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!!

I'm So Excited!

Today was a rough day for me. I didn't feel too bad (well, no worse than normal) when I woke up, but things just got progressively worse as the day went on.

I ran to Wally World to get a new mouse for the lap top (still can't find our other one). I needed a few cleaning supplies too, so I headed out after my shower. All was going well until I stopped at the coolers to get some yogurt. I got the worst pain that spread quickly down my legs. Taking one step felt like I was walking on broken glass. I hurt so much that I had tears. One of the Wally World employees came over and asked if she could help me.

She went to the front and got a scooter for me and transferred the few items I had to the basket. She walked with me to the front of the store and helped me check out. She walked outside and asked where my car was parked. I pointed to my view and she said she'd get it for me, to just sit and wait.

God bless this woman.

She pulled my Vue to the curb right in front of me, and loaded my 4 little bags. I couldn't thank her enough!

By the time I got home, I shuffled into the house and into the hot tub. It helped, but the pain stayed...and spread. Which is what FM will do, if it so pleases.

I've learned that fighting it does noooooo good. You tolerate it until it decides to lessen.

Around 4:30 the phone rang and it was my Doctor's nurse. Apparently Jay had called them telling them about the pain I had today. My Doctor is out of the office today, so the nurse took all the info and said they'd call me back.

Big deal. My doctor is nice, but no specialist, and therefore is only able to do so much.

About 5:00 the phone rang again. The woman said her name was Laurie and she was the nurse of the specialist I was to see in a few months. She said they have a cancellation for...TOMORROW. Would I be interested in coming in?

YES!!!!!!!!!!

I am so excited that I know my insomnia is going to be even worse tonight...ha! This doctor is a Rheumatologist. He specializes in diseases, syndromes, and conditions involving chronic pain. I am so hoping he can give me ideas and suggestions on ways to ease the daily pain and make it possible to get back out in the world again!!

until tomorrow......

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.