The Limit

Eyes closed.

Twitches in the right leg.

Fatigue bearing down hard... and then harder still.

Pain everywhere, not taking a chance on me ignoring the warning signals this time.

I am overjoyed at the fact that I have been able to exercise daily (with one day of a break) these last two weeks. It has felt good physically and emotionally, and now I know I can do it again. That makes this gigantic flare worth it, and I must be honest and say I am in a hurricane of a flare.

To coin Britney Spears, "oops! I did it again." I thought I was going to outsmart Fibro. It's easy to do. We're so desperate to not have pain, not have fatigue that we often times start to believe that it's gone. My energy levels were up, and though my pain was pushing, I ignored it and kept at it. Not just exercise, but going on several outings versus my one or two a month. And now I feel it everywhere. Absolutely everywhere.

There is no shortage of pain... stabbing, unmerciless pain. Fatigue wrapping it's rubber band around my eyes and head and entire being. I am in misery physically. I ignored the warning yellow lights these last few days and now it's a complete red. And yet I feel encouraged....

Because I DID IT! I exercised. And I will again.

Encouraged because I am in a flare but I still have my positive outlook. That has taken three years to cultivate! It's a victory of epic proportions for me. I am emotionally balanced even while my body is freaking it's freak.

I am so grateful for that. Without the emotional balance, all that is left is sad, angry, lonely feelings.

I have hit my Fibro limit for right now, but my spirit soars...

And that makes everything worth it.

Not Quite Trite

When I first got sick I started writing down every little symptom. It was a puzzle that needed to be solved and I believed with my whole heart that a doctor somewhere was going to diagnose me, medicate me, and set me back on the road to regular life. Now, nearly three years (or four depending on what we go by) I know that is not the reality.
I am aware that the issues I deal with, most especially Fibromyalgia, are chronic and long lasting. I know what medications aid me and certain things I can do to create wellness for myself, and I know that there is light at the end of that long, dark, lonely tunnel.
I still keep track of my daily symptoms. It has become a habit by now, and in some ways it helps to see how far I have come. It is a reminder that I am not crazy and that I am really and truly enduring... fighting... this disease. It went from scribbles on scraps of paper, to calendar paper, and eventually I started logging it into a composition book... a book that is now almost full.

Looking at these pieces of paper, pen scrawled across displaying the heartache and craziness of the last few years, is a bittersweet thing. I see how very far I have come, and I feel new peace and joy at where I am heading. This is certainly not what I expected to experience at 32 years of age, but it has been all mine for the taking, and I would not trade all of the tears, agony, and confusion for anything for it has resulted in growth unmeasured.

I am thankful.

For the last few years I have been unable to exercise on a daily basis, and yet... these past 5 days I have walked around the block every single evening. Today will make it 6. That is no easy feat, and I am so thrilled and excited! Is it easy? No. Not at all. I am in a huge flare, the invisible cotton stuffing and filling my ears and head, my limbs weak and in protest after going out yesterday. I feel the irritation mount as fatigue demands and sucks and takes from me with no warning. I have to correct as I type because my eyes strain and I misspell every other word. I say this, not as a woe is me, but as a sign that things can get better despite the very real illness invading my body.

Things DO get better.

The darkness gives way to a little light, and than more, and suddenly it's blazing, and even though the pain is still there, the fatigue is still pressing, it pales in comparison to feeling like I am back.

I am back.

Back where? Back to a mental state where I can go for a walk, knowing it will hurt, but that it will also make me feel emotionally better too. Back to laughing easily. Back to feeling hope and excitement. Back to wanting to be a part of the world again. Back to living.

I do not want to make light of this. This post has been 3+ years in the making. I did not just get sick, have a brief season of acceptance, and then prance my way into exercise and emotional stability. In actuality it has been grueling, 24/7 work. I have screamed, sobbed, lashed out in anger, been depressed.... severely depressed if I am being fully transparent here. I also have to be honest with myself and admit that I am not cured. I still have Fibromyalgia, and I am still liable to get mad, get depressed, or lash out. I am not perfect, and I am still sick. That hasn't changed. What has changed is my response.

I did not wake up 5 days ago and suddenly have this energy to bust out of bed and walk around the block. I still have to push myself to get going. If I can try to explain it, it's like this.... I was in pitch black for a very long time. It was so, so dark. I'm not even sure how I could see at all, but God was faithful, and He kept me going. EVERYTHING contributed. Every comment, every note, every moment of research, every prayer, every tear, every word from every person, each moment logged in my journal, every blog I read, every everything. I knew I was in a wild place, but I did not even know the depth until I started to come out of it a few months ago. And when I started to come out of the wild place, it was a slow, little by little process which led to 5 days ago, which led to yesterday, which led to today and this blog post. I feel like me again. Well, me with some changes. I don't feel like "a normal" but I feel the most normal I have in years. I feel lightness and freedom in my soul, in my spirit, and I will tell you, I had absolutely no idea how much I missed those things until I had them back. Suddenly I know that I know that I know that I can do this! I CAN DO THIS! Not only because I have been, but because the grief is gone and I can see somewhat clearly again. I remember my strengths. I was walking around in shame, walking around with my wounds on the outside.... so insecure, feeling judged, feeling afraid to do anything, say anything, be anything. I let what others said or thought dictate how I lived my life. I was lost. Now I feel secure, I feel like I can stand up for myself again, I feel like I have the ability to say no, because I have re-learned that I don't owe the world, and I have newly learned that I do NOT owe the world for being sick. It sounds the same but it's two very different things. Having Fibromyalgia, it's easy to feel defective and unusable, and not worth the time. Those are lies! It is unicorns and the fresh heady scent of flowers and dazzling streams of water to realize this!

I am not healed in body, but I believe that I am healed emotionally. The trauma of losing so much- job, home, health, friends, etc. has taken me through a desperate and gritty forest, but now I am breathing in the clean air and balance has been restored.

Thank you Jesus!

Exercise and Stuff

After I started the Gabapentin over a week ago, there was immediate relief. I could press my skin in the hurt places and although it was still very painful, there was a noticeable difference. The restless legs and arms stopped, and I enjoyed the fringe benefit of getting groggy which resulted in amazing, beautiful sleep.
Then a few days ago I felt it... the dull, agonizing ache deep, deep in my arms. As I fell into sleep, there it went... jerk. My chest grew tight, the ache worsened until I had to get up.
The Gabapentin had stopped working.
I thought maybe it was a fluke so I upped my dosage the next day to three pills instead on one. This time I felt the ache in my legs and arms, and it felt like before I'd ever taken the medication... except 2x worse. The last two nights were horrible. I couldn't sleep and the pain was unbearable. I tried everything again- stretches, creams, pain patches, etc. I finally fell into slumber at 6A.M. this morning.
I feel that the Gabapentin is working for the Fibromyalgia. Not a cure, but it's a definite improvement, but for the restless legs it is not. I am very frustrated. I never thought I would ever say that I would prefer the pain of Fibromyalgia to restless legs and arms. I think that is because the Fibromyalgia changes up- the pain is never the same or in the same place. With RLS it's like being tortured. Imagine how aggravating it is every morning when your alarm goes off. That's what restless legs is like, except instead of a blaring noise, you have blaring pain snapping you back to reality as you drift off into dreamland, not to mention that it doesn't go away during the day. Luckily I have a follow-up appointment on October 3rd, so I hope we can figure something out. I do notice when I take Hydrocodone it does help with the restless legs syndrome. I'm not entirely sure why. I don't have many of these pain pills. Doctors are so hesitant to prescribe them, as if we are junkies. It's absurd.
The bonus is that I have started going on daily walks again around the block. It's only half a mile, but it's a wonderful feeling to be able to move my body. There is pain involved, and the Fibromyalgia is complaining, but so far I have been able to tolerate it, and I hope it lasts. I have missed regular exercise so very much.

This picture is from tonight after the walk. I feel refreshed!

I hope all of you are having a great weekend!

P.S. If you haven't tried the pumpkin spice latte (decaf & soy) at Starbucks I would so recommend that you do. It's my new crush!

Headache

The headaches are visiting again. The kind where even the eyeballs hurt. I've also got all over fatigue and weakness, and pain in various places. Same story, different day.

These patches help a tad bit, but truly I am just ready for bed.

Tomorrow is another day.

Psalm 16

Keep me safe, my God,
for in you I take refuge.
I say to the Lord, “You are my Lord;
apart from you I have no good thing.”
I say of the holy people who are in the land,
“They are the noble ones in whom is all my delight.”
Those who run after other gods will suffer more and more.
I will not pour out libations of blood to such gods
or take up their names on my lips.
Lord, you alone are my portion and my cup;
you make my lot secure.
The boundary lines have fallen for me in pleasant places;
surely I have a delightful inheritance.
I will praise the Lord, who counsels me;
even at night my heart instructs me.
I keep my eyes always on the Lord.
With him at my right hand, I will not be shaken.
Therefore my heart is glad and my tongue rejoices;
my body also will rest secure,
because you will not abandon me to the realm of the dead,
nor will you let your faithful one see decay.
You make known to me the path of life;
you will fill me with joy in your presence,
with eternal pleasures at your right hand.

TENS Unit

Last year before I moved my ortho doctor gave me a TENS Unit to use on the cross country drive. For the life of me I could not figure out how to use it, so it has sat in my closet for over a year. After meeting someone the other week who uses one regularly I decided to take the old thing out of retirement. ;)

It feels pretty good. Imagine how sheepish I was tonight to realize how simple it was to hook up. I'll blame all the stress of the move for why it took me so long to understand it's function.

Information on a TENS Unit: http://www.livestrong.com/article/30015-tens-unit-work/

Over Time

Last night I was entirely loopy after taking my new medication. I have no idea what it is doing to my nervous system but whatever it is, it is strong! Aaron kept looking at me and laughing because my eyes kept rolling around and closing and I felt like I was intoxicated. The precious news is that I was able to sleep without the use of sleep aids, which is HUGE. For the last few years I have been unable to sleep without some kind of pill or cannabis. Even still, sometimes I have lain awake even with the help of sleep aids, but this new medication knocked me out. I might have woken up once or twice to use the bathroom but otherwise I was down for the count.

I'm not sure how I feel about it honestly. I started getting teary a bit as I was falling into slumber, because I do not relish the idea that I need so many pills just to function. I get these grand ideas sometimes, of chucking them all out and just not taking anything anymore. I have stopped taking certain ones that weren't really making much of a difference, but my attempts at stopping the important ones only bodes in chest pains or enhanced physical pain. It's quite frustrating. I am in my young adult years and I rely on these supplements to build up my weakened immune system, and these other pills to help combat the conditions I carry. Before I started taking the prescribed supplements I was getting sick with something new every week. Literally. Double eye infections, ear infections, numerous infections attacking my womanhood, colds, staph, etc. It was never-ending. And then I got treatment and whatever they put me on seemed to work.

I'm grateful to live in a country where I can receive medical care, even though at times it has been a dead end road and frustrating. I'm grateful for medication, I am, but I don't like the knowledge that I have to take them. It's a lot. And I really am not a fan of realizing that I will possibly have to take them for the rest of my life. I also don't like not knowing exactly what it is doing inside of my body. Everyone reacts differently to each pill and I am extremely sensitive to side effects now. Anti-anxiety medication worked for awhile and then I started getting really depressed and have rage attacks. Needless to say I stopped ingesting any pills from that family. So now, taking a pill that directly affects my nervous system makes me a bit uncomfortable. I held off on this kind of medication for a long time. In fact it was prescribed in 2010 but I never started it because I wanted to try to do everything as natural as possible. Now I am at the point where I can't ignore my need to at least try it. It's a double-edged sword. I already feel relief from restless legs and being able to sleep was priceless, but I have read that there can be weight gain, swelling of the hands, feet, and face, mood changes, and a plethora of other things. I pray, pray, pray that will not happen. I really do not like taking something that is directly altering my brain and my nervous system, but since that is my illness I don't see much other choice.

When I first got sick, I had this primary doctor and he was very nice....so open and available. He always answered my emails and seemed so very sincere about wanting to help me get answers. At that time I had a kidney infection and lower back pain. After an MRI and a bone scan I was told that I have the back of a 65 year old woman and would no longer be able to work with children. I was devastated. He sent me for physical therapy and when the girl told me to bend a certain way, I told her it hurt. She scoffed at me and told me I was not in pain. Yeah, that happened.

After I stopped working, I could no longer afford my health insurance and the doctor who had been so willing to help me figure out what was wrong literally told me that it was in my head. I went to see him after being up all night in severe pain and misery, throwing up and crying. When I got there I felt like I was on my way to death. He looked at me and told me that he had run all the tests and that he believed that I was unhappy and that when I came to see him I got happy. He basically told me I was faking it.

My heart was crushed. I had thought he was on my side. But he was the first doctor who told me that my very real pain was all in my head.

Over the years I saw doctor after doctor. As the skin on all of my fingers began to bubble and peel off so that I had to wear gauze on the bloody mess, as the pain got so severe that I couldn't do much at all anymore, as I got infection after infection, as I threw up for no reason at all, as I got so tired I could not keep my eyes open, as I bled from places people shouldn't bleed from, as I got urinary tract infections back to back, as I had diarrhea every single day, all day, as I got dizzy and overwhelmed easily, as I started to get numb in my fingers, as my knees buckled when I was walking, as the pain pretty much took over... I continued to believe the problem would be discovered and I would be fixed. That wasn't the case.

Instead, I encountered many doctors who were dismissive and few that actually took the time to help diagnose me. My diagnoses did not come all together, but instead spread out over the next 2 years until I finally learned all of my different conditions, and the main condition that was the most debilitating and the culprit of all of my daily pain and fatigue. I had so many examinations and tests. Prodded in places that never should be invaded. I had several out patient surgeries for my back, and some of those involved not even getting numbed when they stabbed the huge needle in me. I saw many emergency room doctors, an endocrinologist, a dermatologist, a pain management doctor, a GI doctor, an orthopedic doctor, and they even made me have a psych evaluation to make certain I am of sound mind and not just making all of this up. It took forever to see a rheumatologist because I had lost insurance and had to go through the county, and they put me on a wild goose chase, eventually telling me there were none in the surrounding areas who would see me. I ended up finding a Fibromyalgia Clinic online and got donations to be seen there. That was a godsend, as they tested me for viruses and actually validated my sickness. All of this happened while I had no income, and no ability to work. I was reapplying for food stamps and county insurance as soon as it was up. Many phone calls were made, and there were TOO many professional people who dismissed me and made me out to be a loony bin.

It was the most pressing, humiliating, humbling time of my life. There is no grace or dignity when you are bleeding, throwing up, breaking down. Nothing pleasant about being told they don't know what is wrong with you after having things shoved into you, and poked into you, and having so many different doctors and nurses see your most private parts like it is nothing.

I started to get night sweats, peed on myself a few times while sleeping, started skipping my periods, got super oily hair for awhile, started having skin issues like psoriasis and cherry agioma, my blood pressure started getting high, I got hives, benign cysts, my face got puffy... I could go on and on, and the truth is that it won't convey the hellish nightmare Fibromyalgia is.

We endure this, or some variation of this, on a daily basis. I have said before, and I will say it again, there is never a break. Now, I feel blessed to be at a point where I now have some answers and I know of my various illnesses that all work together to further destroy my immune system and nervous system, but it was a long, scary, maddening road to get to this place of medication and a certain equilibrium. Even knowing what I know, sometimes... well, a lot of the time... it is still very scary. There have been different seasons of sickness where I feel very dark and depressed, and other times when I feel very hopeful and determined to have a quality life. It just depends on what is going on in my brain at the time.

The point is this, this is not an easy road to travel. We start off not even knowing where we are going, or even that we are walking on a path, and pretty soon we are well on the trail and we can't turn back. Often times we continue to glance behind or stop and try to figure our how to turn around.... we long for what we knew before, we long for health. We may camp out at that spot for quite awhile because we believe that if we want it bad enough, we may wake up the next day and be off of the trail and back in the land of normalcy. Eventually we may realize that looking back doesn't work, and neither does standing still, so we trudge on because that is the only choice. A lot about who we are gets refined and purified and changed. We lose friends, family, jobs, security, and all of the things that we thought made us who we are. We change. Unwillingly at first, and then tentatively.

I can't say that we ever want to keep going on this trail, because I am still walking on mine. I can only say that walking on is the only thing to do. When the pain gets too much, when the dark thoughts come, when the will to keep living this way drags, we have to just keep walking. The sun will shine on the dark places, but we have to keep going even when it's pitch black and we can't even see where we are stepping. That isolation, that fear.... that is what propels us into being tenderized.

I cannot say I am glad to be sick. I'm not. What I can say is that after nearly 3 years (4 if we count the year before I got sick-sick with no rebound, which I kind of do because I was sick most of that year too) I am an emotional place where I can see how far I have come. I have forged this new life- complete with a cross country move, letting go of toxic relationships, embracing who I am now, and making life-long friendships with some amazing women. I have many moments of insecurity and comparison to the "heathies." I look in the mirror and don't always feel fondness for my reflection. I cry. I get down about my limitations. But that is the reality. That is the dark place. But when the sun comes out in my soul, I feel it all over my being. This sense of who I am now. This feeling of gratitude that I have come so far, and not on my own strength, but on the God who has never let me go, on the friends and family who have pushed me and encouraged me and supported me, on the other, immensely beautiful people going through this around the world.

My walk is not over. I still have a very long way to go, but I can say I am so grateful for this journey and I have discovered how to live again.

A Day in the Life

As I type this I am in agony. Okay, okay, those of us with chronic pain are near the breaking point almost everyday, but sometimes there are a series of days where it feels like torture.

About a month ago I started getting restless legs syndrome REALLY bad. It felt even worse then Fibromyalgia and that is saying A LOT. It's a part of the cocktail we inherit when we deal with this disease, but I had never experienced it to that level before. Every time I started to drift off to sleep.... TUG! BURN! It felt like my bones were in dire need of being stretched and pulled. Needless to say, I did not get any sleep. Then it started in my arms as well. There were brief interludes (usually in the very early hours of the day) where it seemed to calm down and I could catch a few hours of slumber, but eventually I started feeling the ache all day instead of just bedtime. Bedtime is by far the worst, but to feel the aching and cramping throughout the whole day was just insane. I couldn't sit Indian style, couldn't put any strain on them at all or the restlessness would respond straightaway.

I tried home remedies. Heating pads, over the counter medications, walking around the house, stretching.... but nothing was helping. After speaking with a pharmacist I realized I would probably need medication for this.

Yesterday I started Gabapentin. This medication was first prescribed to me in 2010 but I never took it. It is a cousin to Lyrica, which I just don't want to take. Because I am super sensitive to medications and tend to get emotional, depressed, and full of rage I just do not want to go through that ever again. However, the restless legs is so severe in a completely different way than Fibromyalgia and so I decided to give it a try. I'm not too excited about it. I already take dozens of pills throughout the day and adding yet another one is disappointing, but alas, I must do what needs to be done.

In addition I was also put on an antibiotic for an infection and after some lengthy discussion, my pain medication was refilled. Now, I can do without it but it DOES help. It's so frustrating because when we as patients, find out what medications work for us, they usually won't be prescribed because the doctors don't want us to be addicts. WE ARE NOT ADDICTS. If you have chronic pain, you benefit from pain medication. Isn't that what it's made for?! People who have pain do not become addicted. It has been studied and written about. I do not understand why we have to argue to be taken seriously. It's not some joy ride to pop pills and when we take a pain pill it's so that we can actually, you know, LIVE for a little bit, without feeling like we are dying.So last month was the first time in years that I was prescribed pain medication. I prefer what is natural, but as time goes on, I realize that maybe I have to be more open to what modern medicine has to offer.

Today I am in misery. My arms are hurting something fierce. I've had this issue before but never to this caliber. And in the past, whenever I had pain in my arms, it would disappear and play peek-a-boo just like the pain everywhere else. I had attributed this pain to the restless legs. I had read that it could spread to the arms and it seemed that is what had happened. Now I am not so sure. I just started the Gabapentin last night but already I feel relief in my legs. Like I said, I am super sensitive to medications. But my arms.... oh my gosh! They are hurting so bad. I couldn't open a package of crackers, they hurt when they are still, and they are cramping so very bad as I type this right now. It feels like someone is pulling them off of my body or burying them in bricks and cement. IT HURTS!

To add to that, I am experiencing supreme nausea. I think it is from the antibiotic, and it is purely awful.

I forced myself to go outside today and I made it to the next door neighbors mailbox before I had to come back inside. The breeze felt so good and I wanted to keep going, but my body has other plans for the day.

What Fibro Looks Like

Flare of flares. Between the Medicaid hearing, restless arms and legs for days, and going out more than my one allotted time per week, I am in a hellish state. Eyes glazed, skin hurting to the touch like a bad sunburn, fatigue overwhelming, feet aching.

It was lovely to meet fellow Fibro warriors, but that meant conversation and listening and more overload for an already overwhelmed nervous system.

It was nice to be able to go out with my mom a couple of times, but that meant walking and movement and being out in the real world.

It was necessary to go to the Medicaid hearing, but that was a half hour of answering questions and paying attention and losing my train of thought, and trying to convey my legitimate disabilities.

So now, even after a full night of slumber, my body has decided to go on strike. Which means everything is ten times more amped up- my nervous system is fried and I can no longer shuffle my way through the day pretending I am a normal.

This is the reality of Fibromyalgia.

I Hurt Like Hell

The blog title is the name of a book by Annette L. Jackson. Today I had the pleasure of meeting Annette and two other wonderful women who are passionate about spreading Fibromyalgia Awareness. This is an amazing read simply for the fact that Annette is not some doctor or professional who throws out tip after tip withou going through what we go through every single day. No, Annette has Fibromyalgia and so reading her book feels like talking with a friend about the struggles and the reality that we face as Fibromyalgia sufferers. I encourage you to order her book, whether by hard copy or for your Kindle or Nook. If you are on Facebook, you can get connected here:

http://www.facebook.com/AnnetteJacksonFibro

It was an immense pleasure to meet these ladies. I'm sure we can all agree that there is nothing better then getting connected with others who are fighting our fight with us.


And I won a beautiful gift basket as well!