Friday, October 29, 2010

Only God could love a girl like me

Today is... a day

Ok, so today was really no different than any other day. In all honesty, I'm not gonna talk about a specific day. Consider this a rant, a praise report that I am still alive, a call for prayer (we always need it), or a call for a trip to the psych ward... Yes, that could be every other day in my life and this one too. I try to look at these days as a rather comedic bunch of crazy nonsense!  If you can't laugh about it, well... you are gonna cry, and I assure you I have done a fair share of both on a regular basis. In fact, that may have happened today!

So, my typical day is as follows: I wake up, I force myself to crawl out of bed, I pray for grace, I go into the kitchen and forget why I'm there, I go back to my room and lie down for a moment in the hopes that I will remember why I went into the kitchen in the first place, I pray for strength, I go to work, I forget what I'm doing, I try not to kill anyone, I pray for peace, I come home, I pray for more grace and some more strength... and a bit of sanity... and what the heck, throw in some peace as well, I come home... wait, I already said that, I attempt to make my house livable, I may or may not cook dinner, I lay on my heating pad, I pray some more, and I go to bed...ahh... THEN, after tossing and turning, I go to sleep, wake up, roll around in my bed, go back to sleep, wake up with my teeth clenched and my leg in a cramp, pray for whatever because I don't know what I need anyway, go back to sleep... Wait, it's time to get up!

This may look somewhat familiar to you, or maybe you are perfect and your have never had such troubles.  I have to ask, if it's the latter, why are you here reading this blog? This blog written specifically for insane people or for those who are on the verge of losing their minds. THIS BLOG is for imperfect people who are hurting for no reason, screaming on the inside, but have to keep their face looking happy and normal so as to keep the mental health organization off there back. Yes, this is no place for normal people because you will not have a clue as to what I am talking about.

What are you talking about?

For a long time, my husband didn't understand depression and the black abyss that's associated with that word. I had to educate him. I'm still in the process, and I assure you he is now earning his college degree which just took him 12 years of marriage. He doesn't get the why's and the how's, but he knows that it's real, and he tries to understand as best he can.

BUT, you don't have to understand why. You don't understand what makes someone tick or why they can't seem to explain to you what their pain feels like. The bible tells us to "bear one another's burdens." That would be found somewhere in Galatians, but I'm too lazy to break out my bible and check the address. I'm more concerned about what that phrase means. Jesus said that the most important command was to love God, and right after that? Why... He said it was to love other's like you love yourself, of course.

All we need is love. Duh, duh, duh, duh, duh, duh, duh...

Now, I'm gonna ramble on a bit, and for all of my five or six devotees I'm sure you will be riveted by my witty banter with myself... So, here goes. Just a little food for thought because I know your brain is hungry. What if you can't bear to love yourself at the moment, much less someone else? What if the people around you are so full of themselves that they can't see the forest for the trees and even though they know they are supposed to believe and practice these lines in the bible they see the black cloud that has settled over your person, but they ignore it... They think, "They'll get over it." or "They're in a mood again." or better yet, "They need to get a grip." What part of this is, "Loving other's like you love yourself"?  What part of this sounds like we are bearing one another's burdens?

I'm not saying that I'm perfect. My friends have been in a funk before and I did nothing. I have watched them in the beginning stages of self destruct mode, and I have turned and walked the other way. Why do we do that?  I was scared. I didn't know what to do. Me! The one who knows first hand how it feels to have that "thing" settle over her heart and zap the strength and will right out of my soul. Yes, I was too scared to do anything.

I know it's hard for people who have never felt this kind of pain to understand it. I know it's hard for people who have never felt their brain covered with a cloud of fog, been kept awake by leg cramps, cried or wanted to cry because their skin hurt for no reason, felt like taking some one's head off because the headache just wouldn't stop, or been bombarded by a variety of symptoms that made no sense at all to anyone including your doctor.  How can a person, "bear one another's burdens" if they don't understand the burden?

I have learned a few things in my mere 33 years here on this planet. (Who knows how long I was on all those other planets) One thing is, you don't have to know how to bear those burdens. You don't have to know HOW to love someone. You just have to do it. I get so tired of people trying to fix things, or help me with their words of encouragement. Sometimes we just need to be loved. Sometimes we just need to have a friend who wants to talk to you about nothing in particular... Because they love you.  I've spent a lot of time worrying over those verses. Wondering how I was supposed to bear some one's problem that I didn't even understand. Trying to think of the perfect words that would change their heart and mind forever, and set them on the path to healing and being closer to God. Yes, I just knew that was my job! That was what I am, as a Christian and leader, supposed to do. But I don't think that's what He wanted at all.

I just want you!

You know how I know someone loves me? Because they think I'm important enough to talk to for longer than five minutes, and about nothing in particular. Just spend time with me. (Wait... isn't that what God wants too? Ok, that's another blog) Time was and has never been my primary "love language". Have you read that book? It's very good! Well, my love language is acts of service. No, it's never been quality time, gifts, physical touch... Nope, Just a good ole' dish washing would show me that you cared! I've come to realize that any of those things I just mentioned can turn into an act of service. My love tank gets all kinds of filled from any of these things if they are done when I just need to know that you care about me. So, I'm inclined to believe that most people feel that way too.

Can we ever get this love thing down?

See, now I've written these words and someone out of the ordinary is going to try to sit and talk to me for an uncomfortable amount of time, because they read this. I will then attempt to hold in my laughter, as I will be the only on in on that joke. I know it's hard to love me sometimes. I know that because I live with me almost every day, and have for the last 33 or so years. I'm sure, if most of you are honest, you can say the same thing about yourself. Let's stop worrying about us, and just take some time to love someone else. Spend some time with them. Reach out and don't worry about the impact you want to make. Just know that your act of love will make an impact. You don't have to come up with some kind of theological words of wisdom... That's so NOT the point.  It all starts with realizing that we may not understand the hurts, faults or agony within our brother or sister, but that doesn't mean we can't sit and share a piece of the clock together. Maybe someday, we can get this whole love thing down, but in the mean time... we should at least practice.

Monday, October 25, 2010

You don't look sick!

Even "Godly" words, from Godly people hurt us sometimes...
"You don't look sick." How many of us have had those words uttered to them? I too, have had some variation of that said to me, but I think they mean well (I know, I'm too optimistic at times). Even Godly words from Godly people hurt us sometimes. There may be a scripture they have taken to heart and they truly believe is it pertinent to your situation, but when it's delivered, all it manages to do is evoke hurt, or a time for us (who do this sort of thing) to look down on our internal strength and be displeased with ourselves for not being able to muster up the "faith" it takes to be healed. They mean for the words to be helpful.  I know some of you are laughing right now at that thought, but I do really think that people, in their "deep down", don't mean to be mean when they say things of that nature. We have to be patient with the people around us who don't understand if we ever expect them to be patient with us.

Sure, there are people who really think I'm faking. There are people who think I must just be "overly sensitive".  Some have accused me (behind my back of course) of being less sick than I claim to be, or just depressed. People in their attempt to help have stated that, "You need to get serious with God." or  "Don't you believe that God will heal you?" Something inside my heart has to believe that they speak out of complete ignorance and therefore I have to have Godly (not Heatherly) patience with them. I, after all, am human and cannot muster up enough of my own patience to deal with them.

Just like anything we go through, other people cannot know the pain, torrment or hurt it has caused you. You are the only one who knows the condition you are truly in.
"Well, you didn't act sick yesterday." Is another common phrase that comes up.  Maybe I didn't look sick or act like I felt bad. Maybe, I was using every bit of strength I had in me to put up a front for you... OR, maybe I WAS feeling pretty good yesterday. If you are reading this and you do not have this thing called Fibro, you must understand that many of us have good days and bad days. We don't choose when we will have either, and a good day can turn into a bad day and vice versa. There are some days that a cloud settles over my body and mind and it takes everything in me to just function as a "normal" human being.  There are a variety of illnesses that have that type of affect.  Chronic Fatigue Syndrome is one that sometimes overlaps Fibro, and the people who have that will experience good days and bad days. 

Most of us do not know what triggers a "bad day", therefore, we cannot keep from having one. There are some of us who know that they cannot have certain things or be around certain things or there will be hell to pay.  There are some days that the mere smell of smoke on someone who had a cigarette two and a half hours ago will trigger a migraine in me. Other days, I can survive going into the local cigarette shop to buy a pizza... Yes, welcome to small town life!

Ok, I am beginning to feel like this post is a bit "preachy or whiny", and I don't want that. I know that the people who say these things don't mean to hurt us with their words. I know that there are people out there that really do "like" being sick and the sympathy that's attached to that. I know that there is a great deal of misunderstanding and uneducated-ness that follows a lot of diseases.  So, what do I want to get across in this post? First, I guess I want people who are dealing with this stuff to understand they are not alone, and there are people who do care and understand what they are going through. Second, I want people who have loved ones going through this to grasp hold of some general knowledge and understanding.

The bible tells us in Ephesians 4:1 Be completely humble and gentle; be patient, bearing with one another in love.

We have to learn how to interact with people and what turns them away from one another. If I know that I am going to be bombarded with healing scripture and a "word from the Lord" every time I see one certain person, I am tempted to run the other way when I see them coming. If I know that I am going to be bombarded with love, acceptance and a gentle or uplifting word when I see a certain someone, I am tempted to seek them out on a regular basis. The bible doesn't tell us to interact with people in a harsh way, or tell them how to fix their issues.  The bible does tell us to be patient, humble and kind with each other. To forgive wrongs, to turn the other cheek, to bear one another's burdens, to have empathy for those who are struggling.

There are times when it's necessary, and God ordained, for us to deliver criticism or correction to one of our bothers or sisters, but when they are weak or hurting or dealing with an ongoing issue... It's time to love and support.

The world will know that we belong to Christ if we love one another. At least that's what Jesus said, so I am inclined to believe it was important to apply it to my life.  I'm not perfect and I don't claim to be! I don't always love people like I should. We must start making that a priority in our lives. No, we can't tap dance around on eggshells so we don't hurt some one's feelings, but we should be mindful, considerate, and not belittle others for any reason.

What do you say when people don't understand?

I used to argue with people when they would tell me something they were sure would "fix" me. They would give me a verse that was supposed to instill in me a determination to make myself well, or let God make me well. I would go home, look up verses that countered their opinion or that showed that not everyone gets healed, and be ready the next time they came at me. It wasn't that I didn't want to be healed, because I do. It wasn't that I didn't believe that He can heal me, because He can! It was that I didn't think He did heal everyone. I don't think it's in His will for some of us to be without our burden until we find ourselves in Heaven.  This is a fallen world we live in, and things are sometimes pretty crappy. After all, Paul pleaded three times for a burden to be lifted from him, and God said, "My grace is sufficient for you, for my power is made perfect in weakness." Wow! If Paul, the man who started the Christian church as we know it, wasn't healed... Well, all I have to say about that is, I am in good company. I will try to be patient, I will try to "boast all the more gladly about my weaknesses, so that Christ's power may rest on me. (2Corinthians 12:8-10)

Fortunately, my wonderful husband believes me and although he cannot possibly imagine what I personally feel like, he does try to be empathetic.  I, in turn try to realize what it must be like to be married to someone who never know what she is going to feel like, and hurts like she's getting the flu. That's what we need to do for each other! You can assume all day long what's going on in someone else's body, mind, heart, spirit, but you cannot know until you walk around in their skin.

So, I hope I haven't made anyone angry or upset. I don't want anyone to think that I don't appreciate words given that are meant to uplift or exhort. I am so thankful that I have a church family that loves and supports me. They have proven that fact so many times in my life and I am proud to be called part of their family.

If you don't have a church home or a group of people that you can depend on, I encourage you to seek them out. Church, so often, has a bad name because of hurts that us mere humans have caused others. It took several tries for me to find the place that God wanted me, and I can't say that I haven't been hurt in the church where I am, but I remind myself that we are all in the process of growing up. I can't expect them to be patient with me if I'm not patient with them!

I hope you all have a blessed day, that you are pain free and energy rich! I also hope that you are able to take a look at the world God has painted for us and be amazed by the wonder that we take for granted every day.

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Sunday, October 17, 2010

What is Fibromyalgia?

If you or someone you care about has been diagnosed or thinks they may have Fibro, there are a lot of unanswered questions that one site alone just doesn't seem to be able to comprehensibly answer. I know that this blog cannot do what these carefully crafted websites cannot do, but I want to try to combine all the information that I have read on so many different websites, books, and from individuals who have been dealing with this syndrome.

If you were to begin to look into this thing called Fibromyalgia, you would see a general list of symptoms that might look something like this one below. No one person is the same as the next, and some symptoms may come and go. This magician (now you see it now you don't) like list of symptoms often leads many who have Fibro to think they are crazy, or imagining the symptom they had yesterday or even ten minutes ago.  It's very easy for me to convince myself of things like that, but I had it explained to me this way... Giving birth was very painful, but the next day, you might remember it hurt a lot, but you cannot begin to remember exactly how painful it was. No matter how traumatizing the pain was in the moment, most women would do it again. At least with pregnancy, you have something good to show for all the pain you just experienced, but there is some truth to the idea.

The typical list of symptoms
  • Joint pain
  • Fatigue (moderate of severe)
  • Aching of the skin or muscles
  • Pain that jumps from one spot to another without reason (migrating pain)
  • Brain fog
  • Jaw and face pain
  • IBS (constipation and or diarrhea)
  • Feeling anxious or depressed
  • Painful menstrual periods
  • Chronic muscle pain, muscle spasms or tightness, weakness in the limbs, and leg cramps
  • Tension or migraine headaches 
For years I've dealt with issues, illness and just a variety of things that I never even thought about blaming on Fibro. From migraine headaches (from age 7) to chronic female issues (most of my life after puberty), I had decided that I was either dying or falling apart slowly. My mom told me that she remembers me asking her if I could soak my feet because they hurt, quite often. I spent a great deal of time being sick as a young person, and having doctors making me feel that it was all in my head, or that the issue I was currently suffering from (singles in one case) had to be the affect of bad choices I had made, or that I was just battling a low immune system. They spent a great deal of time trying to test me for AIDS, STD's (even after I told them I had never had sex and had not used drugs)and a variety of other diseases.  I complained that I was tired all the time, so they tested me multiple times for Diabetes.  I was having anxiety attacks and they were sure it must be Asthma.  The pattern continues into my adult life when I was in so much pain and having so many female issues, such as chronic reoccurring yeast and female infections, pain during intercourse, low sex drive (why would I want to when it hurt?) depression, anxiety, fatigue, migraine headaches, joint pain, and the list goes on.  The doctors would look at me confused and bewildered when my test results would come back negative. One was sure my husband had cheated on me and that I must have an STD.  She even tried to convince me that you could contract some STD's from toilet seats. On more than one occasion I was told, "You are just depressed."

I would go into the office with a list and end up in tears as I told the doctor what I wanted him to figure out. Why am I having this issue? Why am I hurting like this? Why am I tired all the time? What is causing this? Am I dying? Am I crazy? I wanted answers, not a medication that would make me forget the symptoms were there. I tried to keep most of the symptoms secret because I knew that people would think I was making it up, or that I "Liked being sick" or "Just wanted sympathy." On the faith side of things, it was hard for me to believe that God really gave a flying flip about me when time after time after time, I was ignored as I begged for healing or at the very least, "Just take a few of these issues away from me!"

I had read about Fibro, but in all honesty, I thought it must be what they labeled people who were crazy or they were tired of dealing with. BUT I didn't know the history of Fibro or the history of many other diseases that were once labeled syndromes... More on that later.

Then, a wise doctor that I trusted, asked me after I sat if in his office crying for fifteen minutes while I explained my list of maladies, if I had ever heard of Fibromyalgia, and I said, "The hypochondriac's disease, right?"  After he laughed, he told me that he thought it was a legitimate condition and that I should read up about it, so that's what I did.  After I checked off just about every symptom off the normal lists one finds on the Internet, I continued to look, and I found these other things you might be dealing with and a host of other intriguing info that I will give you as this blog continues. Why? BECAUSE it's too much into to digest in one sitting... At least it is for me.

These are the things a lot of sites/books leave off the list.
  • Sensitivity to one or more of the following: odors, noise, bright lights, medications, certain foods, vibrations, and cold
  • Numbness or tingling in the face, arms, hands, legs, or feet
  • Increase in urinary urgency or frequency (irritable bladder)
  • Insomnia or waking up feeling just as tired as when you went to sleep
  • Stiffness upon waking or after staying in one position for too long (even sitting comfortably)
  • Sensitivity to fabrics
  • Women are prone to yeast/female infections and a slew of other female issues.
  • A feeling of swelling (without actual swelling) in the hands and feet
  • Acid reflux
  • Hair loss
  • Lipomas
  • Impaired language
  • Noise sensitivity
  • Profuse sweating
  • Nose bleeds and hemorrhoids
  • Time, math and spatial problems (some have a variety of labeled learning disabilities)
  • Allergies
  • Ear infections
  • Low functioning immune system
  • Shortness of breath
  • Sternum pain (costochondritis)

There are many conditions that seem to overlap with Fibro. 
  • IBS
  • TMD (Temporo-mandibular disorder)
  • Chronic fatigue syndrome
  • Interstitial cystitis
  • Restless leg syndrome
  • GWS (Gulf War Syndrome)

"It’s an illness that has symptoms that get better/worse
on a day-by-day basis. One day the irritable bowel seems
like the worst symptom, the next day it’s the panic and anxiety,
the next day it’s the pain."

That's not my quote, and I don't know who it belongs to, but it seemed to me to be quite correct.  I hope you can forgive me for not being able to tell you the name of the person who said it. 

There are many great message boards where you can find others who are dealing with the same issues you are. The one I have come to enjoy is

I encourage you to find someone who understands, or will try to understand, and talk to them. Whether it's a message board, a therapist, support group, or an empathetic friend, you need to find someone you can trust to vent these issues and hurts. Having people like that has been one of my saving graces. It kills you slowly to know that the person you are pouring your heart out to doesn't believe a word you are saying. I suppose that goes for just about everyone in every aspect of life. We all need someone we can talk to openly, without feeling condemned or judged.  

I am blessed to have many friends and loved ones that will allow me to talk to them about my Fibro. My husband has been a huge blessing. There are so many women I've talked to whose husband tells them they are just being lazy or they are hypochondriacs.  

So, I will say a special word of thanks to those who have been supportive even when I couldn't put into rational words what I was feeling. You are a treasure and a gift from God.

On my next post, " don't look sick." I will talk more about my faith and dealing with the mindsets of people who love me, my own way of thinking, and how God thinks about me.

Thursday, October 14, 2010

Be Patient With Me...

October 14th, 2010

My Faith Vs. My Fibromyalgia

Be Patient With Me
I have had an idea for some time. This idea seems silly, but I wish I had the fruits of it already at my fingertips. This idea may be a God thing, and maybe it isn't, but I'll figure that out as I go. I ask that you are patient because I have no idea how to do this, but I feel like it needs to be done. I may not do it all the way you would, or the way it should be done, but I hope that in this process I am able to help someone.

First, I want to give this disclaimer: I am not a writer, I am not a perfectionist, I am not a literary snob, I am just a woman battling something she doesn't understand and trying desperately to make those she loves understand it at the same time. I know so many are in that same boat. Things are happening to your body that you don't understand, or that you haven't attributed to this unique "thing" we all have.  The more I dig, the more I see that in most cases, it is part of this puzzle called Fibromyalgia we are all figuring out.

So, When you see words out of place or type-o's, please understand that I do not really care. Well, I do, but I don't.  I will try my best to catch and correct, but I'm gonna miss some. :-) And if you have Fibromyalgia and have experienced that wonderful thing known as "The Fog", you will realize that even the most intelligent people have those days where it places a cloud over your brain that stifles and confuses even the most basic tasks.

Another thing, I am not here to have a heated, argumentative,philosophical debate. Please do not make this a Christian vs. Non Christian thing... This is not the place for it. The purpose of this is to tell you how I am dealing with this syndrome and my faith. Please keep your comments focused on what this is and not what you are trying to make it. I don't mind questions, and I certainly don't mind if you disagree with me! I love discussing different viewpoints, but I will not argue or tolerate hate talk.

My Idea
My idea for this is simple, I want to let you know what I have found out about this syndrome. I want you to see that you are not alone. I called this My Faith Vs. My Fibromyalgia because it has been a battle between the two.  I was at a point where I was ashamed to have people pray for me because I wasn't healed the last twenty-seven times they prayed for me. Constantly I had to fight these notions that, "My faith wasn't strong enough." or "I just needed to get real with God."  I'm still battling these things, and I know that there are some of you, whether you are Christian or not that feel like you are to weak or just plain stupid because you can't get over this "imaginary" disease. 

I want to instill two truths that I have to force down my throat on a regular basis.

1. This is real. Fibromyalgia is not fake. It's not a lazy person's disease. You are not a hypochondriac or just too sensitive to pain. It is real. Whether you have it or not is not for me to decide, but if you have been diagnosed with it, it's time to move ahead and tackle this head on as a reality in your life. People with cancer or diabetes, or strep throat don't talk down about themselves because they can't cure it or believe it away. It's time we stop allowing others to tell us how we feel and start focusing on what will make us feel better.

2. God did not put this on you. He is not punishing you for some past transgression. I have plenty, and I will be open with some of mine later, but I am still assured that He has forgiven every sin that I have given to Him. The bible tells us that He threw them into the sea of forgetfulness, and in the world we live in... He doesn't have to add to any of the troubles it already tosses on us. Psalm 103:12 "And as far as the sunrise is from the sunset, he has separated us from our sins." The Message.

3. We are all different and we are affected in different ways. Some may find a cure, some may not. One thing may work for you and not for me. You may find that rubbing raw onions all over your body every night was a miraculous cure, but it may not work for Jane over there, and that is OK. This thing called Fibro is a monster and like any monster, it has different ways of getting to each of us.

 I want you to share as well, and together we can make finding the answers and filling in the blanks a little easier. In my search, I find a list of symptoms here, and another there with things that were not on the first. One website has this, and another that. My hope is to encourage you through seeing my trials and triumphs and help you with compiling all the information I find.

Be blessed and I hope I am able to enlighten and assist you in some way.