I Need Patience as Well as Trust

July 2, 2010

This morning I began reading Sheila Walsh’s new book, Beautiful Things Happen When a Woman Trusts God. I’ve only read the introduction and first chapter but already see so many ways where her battle with depression parallels my battle with fibromyalgia. I have a hard time trusting because of things that happened in the past. I hope that when I finish this study, I will have learned to trust God more in my everyday life, to finally, once and for all, turn my life completely over to Him, trusting Him to direct my path even when I don’t understand where it is headed. I think I’ve always trusted God on the big stuff but the day to day stuff has been a challenge. Sheila says that waiting on his direction and trusting in his presence helps us to become more like Christ. I need patience as well as trust. I want the instant answers that I receive when I am in charge. Maybe the key to me trusting is to have patience to wait for his will to become clear to me.

Jesus wants us to trust him so completely that we no longer question anything that he puts into our hands or on the path he has chooses for our lives. That’s my biggest struggle right now. It’s hard to trust when your body rebels and you hurt so badly that you cannot pull your self out of bed for days on end. It’s hard to trust when your mind is so foggy that you can’t remember the next word in the sentence. It’s hard to trust that all will be well when your income is cut in half and the bills go up. It’s hard to trust when the bill collectors are calling. It’s hard to trust when you aren’t able to do the things you use to. You get the picture.

Job wrote that “Yes, God does these things again and again for people. He rescues them up from the grave.” Job 33:29-30 (NLT) Isn’t that wonderful news? Over and over God is there for us and will pick us up when we fall or when someone turns against us.

Sometimes in the process of learning to trust, we suffer. We don’t like to suffer. Who would? And who would believe that suffering can be helpful? The Bible tells us that suffering truly can be helpful so I work toward finding that help. Suffering is helpful if we turn to God for understanding, endurance and deliverance. Turning from him will only make things worse and harden our hearts. When we lay our suffering at his feet, we are able to learn from a trustworthy God. When allow ourselves to learn from God, it prepares us to accept help from others who are obeying God’s order to help others.

“When God’s people are in need, be ready to help them. Always, be eager to practice hospitality”. Romans 12:13 (NLT)

“Here are some of the parts God has appointed for the church…those who can help others”. 1 Corinthians 12:28 (NLT)

In Joshua 1:5, God assures Joshua that He will be there for him just like he was for Moses. He promised … I will not fail you nor abandon you. Aren’t those beautiful words? God is here with us every step of the way. I think about how Joshua must have felt following in Moses footsteps. As the saying goes, those were some big shoes to fill. Joshua went from being an assistant to being the person who would finally lead the Israelites into the Promised Land – all two million of them. I’m sure that he must have felt overwhelmed. God always reminded him to be strong, courageous and follow God’s word for direction. That’s what we need to do as well. Joshua 1:7 – 9 tells us:

"Be strong and courageous. Be careful to obey all the instructions Moses gave you. Do not deviate from them, turning either to the right or to the left. Then you will be successful in everything you do. Study this Book of Instruction continually. Meditate on it day and night so you will be sure to obey everything written in it. Only then will you prosper and succeed in all you do. This is my command – be strong and courageous! Do not be afraid or discouraged. For the Lord you God is with you wherever you go.” (NLT)

Chronic pain, narcotics and the DEA

January 2010

I've had an awful case of bronchitis and it has finally started breaking up. I've stopped feeling like I was going to cough my toenails up so I think that means I'm better.

During my down time with the bronchitis I got the call I had been waiting on for months. No, Publisher's Clearinghouse didn't call. Something even better to a chronic pain sufferer. Dr. D's office called the morning of the 14th and said they had a cancellation at 4:00 that day. This Southern Lady promptly took it and got there early - and I'm never early. On time but never early. :-) You see, Dr. D is my pain management specialist. I've been on the waiting list to see her since mid October. For someone with Fibromyalgia, Chronic Fatigue Syndrome and Rheumatoid Arthritis, a pain management specialist is a very important person. I have reached a point in my illness where only narcotics relieve the pain - they don't make it go away but they do make it bearable to a point where I can function. Those of us in this situation find it hard to get the narcotics that we need to treat our pain because of our wonderful lawmakers in Washington and the DEA. Our internal medicine physicians and even our specialists refuse to write prescriptions for narcotics for the treatment of chronic pain, even tho they feel prescribing these drugs is warranted, because of threats by the DEA to take away their licenses for doing so. Pain management specialist are there to take up the slack and stand up for our right to not be in pain. However there are so many people with chronic pain and so few doctors willing to work in pain management that it takes months, if not years, to get in with one and get your treatment started.

I hope that 2010 will bring a time of change and awareness about the differences between addiction and dependence. I am not nor are my friends with chronic pain disorders addicted to our drugs. We don't take them to get "high", we take them to function. We would rather not take them but we do so that we can have some level of "normal" in our lives. These drugs allow us to take care of our families, to be wives, mothers and grandmothers, to volunteer at our churches and in our communities. We want to be contributing members of society.

Yes, I am dependent on my narcotics but I am no different than a diabetic who is dependent on their insulin. No one would ever say that a diabetic is addicted to their insulin. Why can't chronic pain sufferers get the same compassion and respect?

Fibromyalgia - Both a Blessing and a Curse

On a Facebook fibro support group several people said that they felt blessed to have Fibromyalgia.  This created quite an uproar and they were called unkind, crazy, etc.  I didn't have time to stay online for long that day.  I offered a suggestion to solve someone’s dilemma they had posted about and signed off the computer.  When I got back on the next morning, the discussion had grown to 66 comments.  As I started to write a response I realized that it would be way too long to read as a post so I moved here to my blog where I say what’s on my mind.  I think you’ll find that I’m pretty passionate about this.

To the group of people that say that Fibromyalgia is not a blessing – I agree.  It is not a blessing that I had to stop work at age 52 after I had just gone back to school and gotten a degree that would allow me to find a better paying job.  It is not a blessing that we struggle because we only have 50% of my income.  It’s not a blessing that when I first became ill I had to try and talk my hubby into going and doing activities we had planned but I was unable to do.  It’s not a blessing that I had to give up my duties as a Eucharistic Minister at my church for several years.  It’s not a blessing that my cognitive function had diminished to the point that I couldn't remember things from one day to the next.

However, there are ways to turn all of that into a blessing. It’s how we look at the life that we’ve been given. It’s a blessing that I can no longer work because as career driven as I had become, it would more than likely destroyed my marriage.  My marriage is worth more than any paycheck or the luxuries that it would provide. It’s a blessing that my employer had paid for the Long Term Disability insurance so that we do have 50% of my income while I not so patiently waited on my Social Security Disability hearing.  It’s a blessing that when the economy fell and my hubby had to change careers and go into retail to find a job, I’m home to spend his days off with him. If I was still working Monday - Friday, 9 to 5, we'd never have the same days off. It’s a blessing that I have learned to encourage my hubby to go do things with the guys and not worry about me being home.  We appreciate each other more when he comes home.  It’s a blessing that when I could no longer serve as a Eucharist minister, a position in the altar guild opened up so I’m blessed to be able to prepare the altar for Eucharist.  I’m blessed to still be able to serve my Savior and my church.

I am blessed because the Lord put me and my now best friend on the same Yahoo group at just the right time for us to meet.  I’m blessed to have a best friend who loves the Lord, who has Fibromyalgia, who loves being a homemaker like I do and who loves to sew and is happy being “domestic”.  That’s the job description I have now and I love it and feel blessed for the opportunity.  I blessed to be a homemaker.  There are many days when I can’t clean or cook.  But I can be here to offer my hubby a cold drink when he comes in at the end of the day.  I am blessed because I have the time to sew for family, friends and charities. 

I feel blessed because "all" I have wrong is Fibromyalgia, Chronic Fatigue Syndrome, Chronic Myofascial Pain, Peripheral Neuropathy and severe edema in my legs and feet.  I am blessed because unlike my BIL who died of cancer or my friend who died of a brain aneurysm, I am here to witness the birth of my grandchildren and to watch them grow up. I get the joy having my young granddaughter ask me to teach her to sew and my  grandson asking me to teach him to bake after watching me make hamburger buns one day.  I am blessed to see my our goddaughter run to me down the aisle at church with a huge grin on her face.

I'm blessed because 11 years ago this week, I met the most wonderful man who loves me for who I am, whose heart breaks that he can't do more for me.  I am blessed with two wonderful children who do all they can to help by cleaning my house and helping with projects that my hubby can't get time to do.  I am blessed that my grandchildren understand that MiMi’s muscles don’t work right and they find things for us to do together that will be easy for me.  I am blessed to have friends that can look and me and know that it’s not a good day even when I tell them it is.  I am blessed that I am able to use the computer to tell others that there is hope.

There is hope for us and we cannot give up.  Giving up is what causes our life to fall apart.  Giving up is why we lose our happiness.  Giving up is what causes us to miss out on the pleasures of life.  Giving up is when we refuse to keep going by refusing to use canes, walkers and wheelchairs.  Giving up is when we are too proud to allow friends and family to help us.  Giving up is not the answer.

If you pain is too bad for you to function and your doctor is not willing to prescribe the stronger medicine you need, find another doctor.  It’s your right to do so.  If you are worried about becoming addicted to a narcotic pain reliever, get over it.  If that’s what it takes to manage your pain so that you can enjoy life, take it. There’s a difference between addiction and it being a medically necessary drug for you to maintain your life.  You aren’t taking them for “fun”.

Use those canes, walkers and wheelchairs so that you can go out to dinner or the park with your family.  Don’t be ashamed to have a handicapped tag or hang tag for your car. Take your medications with you and pack a small cooler with snacks and something to drink. Plan several days ahead for an outing and limit your activity so that you have the energy to go out.  Yes, you may “pay” for it afterward but what’s worse – feeling sorry for yourself because you couldn’t go or being tired with more pain but with the wonderful memories of the day you had with family and friends.

All I ask is that you think about it.

There Is Something to My Life

Written July 10, 2010.

Anxiety has its use, stimulating us to seek with keener longing for that peace which is complete and unassailable. – Saint Augustine of Hippo

Anxiety, worry, nervous, uneasiness. Use whichever word you want but those of us with fibromyalgia and other chronic pain illnesses could write a book on it. We feel that we have to think and rethink every decision we make. Making the wrong decision could result in more pain for our already pain riddled bodies. When Paul was writing the Philippians, in verses 4: 6-7 he told them

"Don't fret or worry. Instead of worrying, pray. Let petitions and praises shape your worries into prayers, letting God know your concerns. Before you know it, a sense of God's wholeness, everything coming together for good, will come and settle you down. It's wonderful what happens when Christ displaces worry at the center of your life."

We should believe and live our lives according to these verses but so many of us, me included, find it so hard to do at times. The desire for relief from pain overwhelms our ability to think rationally. Job who shared our pain, allowed his desire to understand why he was suffering to make him question God. Through Job’s life, we learn that knowing God is better than knowing answers, God is not arbitrary or uncaring and pain is not always punishment. I’ve been guilty many times of asking why. Why has God allowed me to be in so much pain that I can no longer work? What did I do? What sin did I commit? The answer I always hear is "Have Faith."  So I struggle on, trying to remember that God is here beside me, catching me when I fall. Is it easy? No. Is the reward worth it? Absolutely! God has never failed me and I continue to believe that he has a plan for my life. I try to be patient and wait for Him to show me what he would have me do.

Job shared our physical pain. In Job 7, he talks to God about his pain.

"Human life is a struggle, isn't it? It's a life sentence to hard labor. Like field hands longing for quitting time and working stiffs with nothing to hope for but payday, I'm given a life that meanders and goes nowhere — months of aimlessness, nights of misery! I go to bed and think, 'How long till I can get up? I toss and turn as the night drags on and I'm fed up! My days come and go swifter than the click of knitting needles, and then the yarn runs out—an unfinished life!"

Sounding familiar? Read a little more.

"And so I'm not keeping one bit of this quiet, I'm laying it all out on the table my complaining to high heaven is bitter, but honest. Are you going to put a muzzle on me, the way you quiet the sea and still the storm? If I say, 'I'm going to bed, then I'll feel better. A little nap will lift my spirits, You come and so scare me with nightmares and frighten me with ghosts that I'd rather strangle in the bedclothes than face this kind of life any longer. I hate this life! Who needs any more of this? Let me alone! There's nothing to my life — it's nothing but smoke." (The Message)

Life truly is a struggle, isn't it? How much of a struggle depends on our response. Do we turn to God first and then our family and friends to help us or do we go it alone? If we are really honest with ourselves, most of us would probably admit that we are more likely to go it alone first. After all, we've heard all our life that God helps those who help themselves. That saying is not from the Bible but comes to us by way of Benjamin Franklin (Poor Richard's Almanac, 1736).  Mr. Franklin was a deist and so he believed that God did not play an active role in men's lives. In his point of view if man was not able to help himself, then man was hopeless.  That is simply not true.  God does not find us hopeless.  He loves us and is waiting to help us out of our feelings of hopelessness. Turning to God first is the best solution for any and all struggles we face. God may not take away our pain and suffering but He will be there with us, to comfort us, to love us and to guide us.

Philippians is one of my favorite books in the Bible. I gather so much strength from Paul’s encouraging words. I encourage you to read Philippians and especially chapter 4. I sometimes feel that I am a prisoner in my own body. Paul was a very real prisoner in a very real Roman prison when he wrote 

"I don't have a sense of needing anything personally. I've learned by now to be quite content whatever my circumstances.  Whatever I have, wherever I am, I can make it through anything in the One who makes me who I am." 

God showed Paul how to be content under the circumstances he was in. I believe that God will also help us to be content in our circumstances, if we will let Him.  Allowing God to be in control of our lives will bring us hope, love, joy and contentment.  Let go of your anxiety and turn it over to God.  He's waiting for you to let Him in.

May the peace of our Lord be with you today and always.

How Many People are Misdiagnosed?

More thoughts from 2010.
 
I’m afraid we’d really be outraged if we knew just how many of us are misdiagnosed.  I think this happens many times because the doctors aren't paying attention to what we are saying because they think we are just nutsy boltsy with that Fibro stuff.  In the case of my neurologist, he doesn’t even pay attention to what other doctors are saying. 

My neurologist became my neurologist because he was the doc with the first available appointment when my PCP wanted me to see a neurologist.  I was sent to rule out MS, to find out why I can't turn my neck far enough around to come close to touching my chin to my shoulder and to find out what was causing horrendous hip and leg pain.  My exam consisted of him looking at me, asking a couple of questions and poking at my hip. This guy sat down, looked at me and said I didn't have MS and he felt sure the pain and not being able to turn my neck was that Fibro stuff. He did order an MRI as a "courtesy" to my PCP but only of my lower back and hips.  He wasn't in the room with me 10 minutes and it may have not been that long. 

My MRI showed 2 degenerated disk. (Just that Fibro stuff.)  Fortunately, that diagnosis meant I got to see a neurosurgeon who is wonderful!  He sat down with Bill and I and explained about Fibro and Myofascial pain and how they are different. Then he explained why surgery would be his very last option - he couldn't guarantee he wouldn't make the Fibro worse fixing the back pain.  Fortunately the first nerve block worked. 

I see a different neurologist for EMG studies for my neuropathy. This doctor noticed that I had to turn my body to look where most people would have just turned their head. He ask me about it and told him it had been going on for a while but the first neurologist I saw had attributed it to my Fibro.  He said it was not from the fibro and that we had to find out why it was like that. He also saw my original referral and that I didn't get the brain MRI so he ordered that along with the cervical MRI. Turns out I have 2 degenerated disks in my neck. (More Fibro stuff - I don't think so) I also have spots on my brain from transient ischemic attacks (mini strokes) in the past.  

The next time I went to the cardiologist I took the MRI report.  My cardiologist wanted a different kind of MRI called a MRA to be sure that it was from mini strokes.  Apparently MS can mimic mini strokes on MRIs in the beginning.  The treatment of my high cholesterol depended on what the white lesions (I think that’s what he called it) really were. In reading up on the mini strokes I found out that microvascular disease is common in people with autoimmune diseases. (Maybe it is from that Fibro stuff.)  So he sends me back to my neurologist extraordinaire - NOT.  (Found out he’s agnostic and a narcissus so maybe he does think he’s God.)  I tried to make the appointment with EMG doc because he was the one that found it but since he only does pain issues, they wouldn’t do it. 

The day of my appointment was a really foggy day.  Bill couldn’t go with me and I had forgotten to call my friend Cathy who goes with me to appointments when Bill can’t.  When he came in I explained that I was having a really bad day memory and comprehension wise so I may be slow to answer his questions and would need to make notes while he talked.  He looked at me and said “is that the stuff y’all call fibro fog?”  Then he said that he had looked at my MRI again and there was no need to do the MRA my cardiologist wanted.  He said he’d do it if I insisted but couldn’t guarantee the insurance would pay for it since he didn’t think it was medically necessary.  I couldn’t take a chance on that so I had to do without it.

Should I have insisted on the MRA?  I don’t know. It probably is from the mini strokes. Since we don’t know for sure, I’m taking two different cholesterol medications and a blood pressure medicine because my cardiologist is having to treat me like it is mini strokes.

So if I have had this kind of runaround, how many people are there out there that have been through this as well?  How many people are out there without a proper diagnosis of something that may kill them in the long run? 

The Countdown is On! A Change is Coming!

After being gone for so long from this blog, it looks like I'm coming back to it soon.  We've had a roller coaster ride over the last 9 months.  Some was fibro related, other things became fibro related because of the stress that threw me into a flare from dealing with it.  I've got a post started I'll share with you next week about the craziness around the Martin house.

When I started this blog, I was in constant pain that pretty much never got lower that a 7 and when it did, it didn't stay there long.  I found an awesome pain management specialist and have learned a lot about how to pace myself.  Because of this, I am managing my pain pretty well and keeping it in the 4, 5, and 6 levels most of the time.  I still have plenty of days that hit an 8, 9, or 10. I'm just blessed to have some good days in between them now.

I've had lots of time to think about what I wanted to do blog wise. I thought about just abandoning it - for a very short period of time.  I thought about how boring my pain is this days and figured if it was boring to me, it probably would be to you guys as well. I definitely feel that I'm to be an advocate for those of us who suffer with chronic pain. So I'm coming back.

I'm coming back with new ideas that I want to share.  In addition to hearing about how fibromyaliga rules my life, I want to share research information, articles on our illnesses and have some guest bloggers come in.  I've also thought about doing some giveaways.  :-)

I don't know about you but housework, grocery shopping, menu planning and cooking can really be HUGE problems for me when I pain is really bad.  I'll be sharing ways to get these things done with your pain and how to keep these things from increasing your pain.

We need to relax whenever we can but I have a hard time just sitting watching TV or playing on the computer.  I'll be sharing ideas for activities that will be both relaxing and fun.  Right now I'm thinking about book reviews, blog reviews, crafts and sewing/quilting.


Sundays will be a no writing day.  My plan is to share something with you that had an impact on my life that week through pictures and/or a Bible verse.


I'd love to hear what you think about these ideas.  Is this the kinds of things you'd like to see?  Should I stop writing all together? What do you want to see on the pages of My Life with Fibromyalgia pain? Please let me know through a comment.

I'm Back! I Hurt! What's New?

I can't believe that I've not posted since January 14!  So much for part of the life changes I had planned. I did a update on how they are coming along over on Rambling Thoughts of a Southern Lady. 

It's been crazy around here since Thanksgiving. I wrote about some of it  here and here.

Between the holidays, kids coming to visit, sinus infections, a reaction to a new drug, the flu and the stomach flu, not much of what I planned has actually happened.

My pain has gone up and down much like a kid's see saw.  It's been a Level 4 and it's been a Level 9 it even hit Level 10.  Sometimes it's been at both ends of the scale in a 24 hour period. I can't take the flu shot because I had Guillain-Barre Syndrome when I was 14 but I've been blessed to not have had the flu for several years.  This year I got the flu.  For about 4 days my pain stayed between a Level 7 and Level 9.  I probably could have taken more medicine for the pain than I did.  Since I was also taking antihistamines in an effort to try and open up my sinus passage and I was home alone much of the time, I was afraid to take much more that my normal.  I would rather hurt and still be here to see my grandchildren grow up than to take a chance on mixing the wrong medicines or amount of medicines.

About a month after that I got the stomach flu that was going around.  I woke up one morning and felt pretty good and I was loving that.  A couple of hours later I took Mr. Supportive to work so that I could have the car to run errands.  The errands didn't happen.  I suddenly felt nauseous and got my window down just in time to deposit breakfast down the side of the car in the parking lot where he works. Right outside the big double glass doors.  The doors that his co-workers were standing at watching the morning unfold and drinking coffee. Of course the guys came running out to see if they could help.  Sigh... Talk about wrong time, wrong place.

I headed home and made it about 3 blocks when I knew I was going to be sick again.  Since I knew the Goodwill store had a clean bathroom, that's where I went.  I grabbed a washcloth off the rack on the way to the back of the store.  Thankfully I was able to make it into the bathroom and wet the washcloth before I got sick again.  After what seemed like forever, I was able to pay for my wet washcloth (or at least I hope I did), get to the car and make it home before I was sick again.  Once again my pain was up between a Level 7 and a Level 9.  After I had been home for a little while, it hit a Level 10 that I hadn't experienced since 2009. Between the pain and throwing up more than I did in both my pregnancies combined I barely moved for almost a week.  I was in a lot of pain when I had the flu but it was nothing like this.  This was the pain that I had before I was prescribed any kind of pain medication but this time I was having it taking 60 mg of Kadian every 12 hours and 30mg of morphine every 3 or 4 hours.


But as the saying goes, this too shall pass and it did.  It took me a while to build my strength back up but I did and started getting back on track.  For a while...

This is where this part of the story ends and a new chapter begins.

 

Carpel Tunnel and Blogging - Not a good Mix

I can't tell you how much I appreciate those of you who subscribe to this blog and keep coming back looking for new posts.  As you know from my last post, my carpel tunnel has been giving me fits.   I can't get in to see my hand doc until the end of the month although I'm close to calling and begging to be worked in.  I've stayed off the computer for what seems like forever (I think it's been about two weeks)  and it seems to be getting better.  Of course, "better" is a relative term. Instead of a hot poker in my wrist it's warm poker in my wrist. LOL  Mr. Supportive hasn't had to open jars, comb my hair, etc for two days! :-) I'm hoping if I take it slow, I'll be able to start posting again.

My fibro pain had actually stayed down in the Level 5 range which is my "normal" and I'm glad for that.  My fatigue level has been really high.  I can't get a good grasp on what's causing it.  My first thought was that it was from my Chronic Fatigue Syndrome but I'm beginning to wonder if it's time to change my antidepressant.  Since sleeping about 18 hours for 3 days in a row didn't "fix" it like it normally does, I'm going to make an appointment with my therapist.  I'm taking the maximum dosage of Cymbalta and have been taking it for quite some time.  I know that it's possible to take a drug for so long that it stops being effective, but I have to admit that it scares me a little to think about losing my old "friend" and going through the process of finding a new one. Since I was taking it prior to my fibro becoming as bad as it has, I wonder how coming off the Cymbalta will effect my pain levels. If any of you have been through this transition, I would really appreciate hearing how it went for you and what your doctor used as a replacement.


Enjoy these wonderful cool days we're having.  This is my time of the year!

Why Do Our Pain Meds Not Control Pain from Things Like Carpel Tunnel?

Pain amazes me.  I take some pretty potent pain medication for my fibro.  When I had my kidney stone problems last year, the ER doc and my urologist told me that what they usually prescribe for kidney stone pain didn’t come anywhere near to what I was already taking.  The pain was absolutely horrendous.  My kidney stone pain was a Level 10 while I was taking my extended release and breakthrough pain medication.  It frightens me to think about how painful it would have been without my pain medication.  Before my fibro got so bad, I was a pain whimp.  Mr. Supportive had to take me to the dentist for my root canal because I had to be drugged up on Valium so I "passed out" in the chair before the work started,  

I still have a fear of needles and the pain that comes with them.  When my son and daughter's father and I got married, we were required to take a blood test.  I seriously sat and looked at him and then the needle several times, deciding if he was worth getting stuck.  LOL  My two wonderful children were definitely worth that needle stick!  I was so relieved when I discovered that the blood test was not required when I married Mr. Supportive.  

I filed my first and only Workers Compensation claim for carpel tunnel.  After wearing the wrist brace 24/7 for several months, it wasn't much better so I bit the bullet and got a shot of cortisone.  It cleared up and my claim was closed. (So now it’s my money paying for treatment.)  Fast forward four years and it’s back with a vengeance.  My pain medications are managing my fibro pain and the everyday pain of the carpel tunnel.  At least it manages it until I turn my wrist a certain way and the pain spikes up to a Level 8 or 9.  I actually scream out when I have to turn it that way.  How can the pain override all the pain medication I have in my system?  You’d think that the pain medication would laugh at the carpel tunnel for thinking it could get past them and bother me.  I’m here to tell you that it’s the carpel tunnel laughing.

Since it’s my right hand and I’m right handed, there are many things that I must use it for.  The task that hurts the most is done in a small room behind a closed door.  It hurts so bad that I put off going to that room for as long as I can.  When I finally can’t put it off any longer, Mr. Supportive knows exactly where I am and what I’m doing by the muffled scream.  Why can’t I either be ambidextrous or have the carpel tunnel in my left hand?

I’ve been wearing my brace for several weeks now and it helps – until I have to turn it that special way.  Last night I took off my brace to wash up the last of the dishes right before bed.  I forgot to put it back on and it’s no telling how it was bent during the night.  This morning, I can’t open the jar of peanut butter without screaming.  

I had sworn off going to anymore doctors except for the Social Security Disability doctors and my pain management doctor.  I’m just really tired of going to the doctor and them finding more and more wrong with me.  Or I’m paying them to tell me what I already know. It looks like I’m going to have to add an exception and include my hand doctor.  I’ve been trying to fight this pain too long on my own.  I feel sure that Dr. Cole will be bringing out the big scary needle and sticking it in my wrist.  Hopefully, that shot will take care of it for another four years.

Since this blog is about my fibro pain, I guess I should mention it.  I’ve had a horrible problem with Chronic Fatigue  lately.  It’s nothing for me to sleep 12- 15 hours at a time.  People often ask if that doesn’t give me a back ache.  Up until recently, it never has but that’s not the case anymore.  My back pain is a Level 6 and my fatigue is still pretty high.

Although I have things to do, I’m headed for a nap.  Pain is something that as long as it stays at a Level 5 or below I can function pretty well.  If it was just the pain, I could probably stay up and accomplish what I need to do. I just can’t learn to work through the fatigue.  Do any of you have any suggestions for getting through the fatigue?  I’d love to hear from you.

My Social Security Disability Hearing and Why I Write this Blog

I'm really not sure what I was expecting when I went to my Social Security Disability hearing.  What ever I was expecting, it was totally different.  :-)  I had worried so much about parking and getting to the building.  About having to stand in front of the building and wait for Mr. Supportive to come back from parking the car.  That was a lot of wasted worrying.  The Memphis SSD office is in a one floor building with parking right by the door.  We arrived at the same time as my attorney and she secured a conference room for us to go over how the hearing would proceed. Rachel Cohen is a great attorney but more importantly, she's a wonderful human being who did her best to calm my fears.  

Instead of this

Unfortunately, Mr. Wonderful was not allowed in the hearing room. Him being there would have made it a lot easier.  Being a paralegal, my point of reference for a hearing room was a court room.  The idea of being "on display" in a big room had really bothered me.  I was glad to discover that a hearing room was nothing more than a small conference room with a table where the court reporter, my attorney and I sat.  The administrative law judge did have a semi- traditional "bench" at the end of the table and I think he was wearing judicial robes. 

It was more like this.

I was able to hold myself together for the first part of the questioning.  Things like my name and what positions I had held in my employment life.  Those questions have clear, factual answers.  It was when I was asked to describe how I became ill.  How it affected my ability to work.  How it affects my ability to function at home.  Those answers are also clear and factual.  At the same time, they are subjective, emotional and based on my inner experience as they happened.

As I told about going to school to be a paralegal and how that was a dream come true, I was calm.  The calmness began to go away when I started telling how my world had changed.  How I could not remember how to use the skills I had worked so hard to learn.  As I told the administrative law judge about the times I was taught a new task in my new job, only to not only not remember how to do it, I didn't remember being taught, the emotion began to overwhelm me.  As I told him of the physical pain and fatigue that cause me to not be able to go to work, the tears began to fall.  Several times, I had to stop and compose  myself.  It was probably the most emotionally painful time of my life.  The hardest question of the day was the last one.  Why did my illness keep me from working full time.

That's when the tear ducts opened wide as I tried to tell the administrative law judge how I had always been the "go to person" in the office.  How I had always been the one at work early and staying late.  How I had always been on top of my game, admired by everyone and receiving nothing but the highest reviews. How almost exactly a year before I had to stop working, I was recognized at my graduation ceremony as graduating with the highest honors - a 4.0 gpa. I worked full time and went to school full time and did both well.  Then without warning, I started becoming a person that I didn't know.  A person who was so fatigued that walking in from the parking lot caused me to have to sit down as soon as I got into the building.  Many times, I didn't think I'd make it into the building and thought about sitting down on the curb to rest.  I became a person who was in so much pain that no matter what I did or what I took, it wouldn't go away.  The pain grew to be so bad that I would throw up trying to get ready for work.  I became the most undependable and useless person I had ever seen.  I didn't understand it and I didn't want that to be my life.  By this point, I was pretty much inconsolable.  All I wanted was to get out of that room and into Mr. Supportive's arms.  


The administrative law judge had been reading the statements from family and friends and the printouts from this blog as he listened to my testimony.  Before we finished up, he asked me how long it took to write a post.  I told him it depended on the day.  On a good day, I could do it in a hour or so.  On a bad day, it could take several hours up to several days.  Then he asked me why.  Why did I write?  I don't think I really knew until he asked me that question. 

In the beginning, it had been to chronicle my pain so that he could read it when that day came.  It was at that moment that I realized that it was much more than that.  I realized that it was also for all of you who might read it.  That somehow it would help you not to feel alone.  It's for your family and friends who don't know what to make of this disease that has completely changed you. We suffer from a hidden illness, an illness that is considered by some, including those in the medical profession, to be nothing but laziness or "in our head".  I'm here to tell you that it is real.  It's only "in our heads" in the memory loss that it causes and the false nerve firings that magnify pain in our body.  It is a real illness that needs a real cure.  Too many people have suffered for too long, physically from Fibromyalgia and mentally at the hands of their family, friends and doctors who don't believe it exists.  

I sometimes feel that the "world" is run by Google searches.  It's time for all of us to use the power of the internet and be as active as we can and get the truth out. We deserve to be heard!  Since most of us become very limited in what we can do, write a blog, comment on blog posts, talk to everyone you can.  Write your state legislators, your Congressman. Become active reading the information that the various Fibromyalgia organizations publish.  Let the world know that we are legitimately ill and we deserve to be treated as such.

I have come to believe that God has a plan for me. A plan to use my illness and suffering to encourage others who suffer like I do.  I'm not sure how it's suppose to work because there are so many days when I can't function.  In addition to Fibromyalgia, I have Chronic Myofasical Pain, Chronic Fatigue, Peripheral Neuropathy,  Lymphedema, Carpal Tunnel Syndrome and 2 herniated discs in my neck and 2 in my back. I trust that He will show me and I pray that I can help those of you who read this in some small way.

Fibromyaliga Effects Every Part of Our Lives - How it Effects My Church Attendance and Spirituality

The fibro has decided to let up a little bit!  I felt so blessed to wake up yesterday and my pain was down to a Level 4!   Not only was I able to go to church, I didn't have to leave the service  to go take breakthrough pain meds.  Often I have to get up and leave to walk around to ease the lower back pain and I didn't have to do that!


My church attendance and ability to take part in the services has drastically changed because of Fibromyalgia.  It's yet another example of how we have to reassess how to do things that before Fibromyalgia we did without thinking about it.  


Psalm 95:6 tells us to Come, let us bow down in worship, let us kneel before the Lord our Maker. Sunday, I was able to kneel at the altar for communion.  I was so happy.  My priest has told me for years that God doesn't care if I kneel or stand because God knows my heart.  While I know that to be true, it is important to me to kneel as a sign of reverence and to humble myself before God. 

St. Andrew's Episcopal Church, Collierville, TN

Our church was built in 1890 apparently without an altar rail. At some point a flimsy, low brass rail was installed. It was pretty low to the ground and hard to get up and down.  I learned when I had knee surgery several years ago that it was not sturdy enough to use as a way to help myself get up from the kneeling position.  Between my pain levels and Bill's work schedule, we were unable to attend services as much as I wanted to this winter/spring.  I was thrilled to walk in the door several months ago and see a beautiful wooden altar rail that matches the interior of the church.  When we went up for communion, I was pleased to find that not only was the kneeler higher than the old one, it was sturdy!  Now I don't worry about being able to get up without taking the rail with me.


While not being able to kneel has been emotionally difficult, it is nothing compared to the emotional roller coaster caused by the changes Fibro Fog has brought to my prayer life, Bible study and being able to serve as a Eucharistic Minister.

St. Andrew's Episcopal Church, Collierville, TN

As a Eucharistic Minister, I assisted the priest during the Eucharist by administering the wine.  I served for the last time in November 2010.  I had a dizzy spell and almost fell standing in front of the altar (and in front of about 100 people!) within seconds of stepping up to the altar.  A short time later, I forgot the words that I have literally said hundreds of times.  As you serve the wine, you say "the blood of Christ, cup of our Salvation."  Depending on how many people are in attendance, you repeat the line probably 50 times in a short window of time. That Sunday I had served 25 - 30 people and as I moved on to the next person, I forgot what I was supposed to say.  No matter how hard I thought, I couldn't remember it. My mind was totally blank. In reality, I'm sure I didn't stand there speechless for more than 20 - 30 seconds.  It seemed like hours.   I was fortunate that the person I was serving was a young child who didn't notice my mistake. The few minutes left in the service seemed to be 100 times longer than it actually was.  That day I lost any shred of confidence I had ever had in my ability to continue to serve as a Eucharistic Minister.  It was one more thing that Fibromyalgia and the accompanying Fibro Fog has stolen from me.

The Order of the Daughters of the King Cross

I am a member of a religious order, The Order of the Daughters of the King. The mission of our Order is the extension of Christ's Kingdom through prayer, service and evangelism. When I entered the order, I made a life-long vow to live by the Rule of the Order which requires a spiritual discipline of daily prayer, service and evangelism, dedicated to the spread of Christ's Kingdom and the strengthening of the spiritual life of my parish.   We wear our crosses at all times as a outward and visible sign we cannot live without Christ in our lives.  I no longer wear my cross when I'm at home because the weight of the cross and it's chain cause pain to my neck and shoulders.  That small pewter cross feels like it weighs 5 pounds when I have it on so I put it on immediately before leaving home and take it off as soon as I am back.

Fibro fog has changed my ability to pray as I once did. Many times I've realized that while praying my thoughts have wandered to thinking about doing laundry or cooking dinner.  Just as when I carry on a conversation, I will completely "blank out" on what i was saying.  In a conversation with people, they are able to prompt me so that sometimes I am able to complete the conversation.  When it happens during prayer, I try glancing at my prayer list.  Sometimes I see a word on the list that prompts me and I can begin again.  Other times I'm forced to ask God's forgiveness and go on from there.  My bedtime prayers are the worst because I'm pretty sure that I fall asleep in the middle of a sentence.  I am no longer able to do the intensive Bible studies that I once did.  It take numerous times of reading a verse to grasp the message in it.  This has progressively gotten worse because last year at this time I was writing devotionals dealing with pain.  Now it takes me forever to write anything that has any "meat" to it.  This blog entry is an example of that.  I started it yesterday morning and this is the third time I've written on it, trying for it to have substance.


Because it has gotten so lengthy, I'm going to close.  I hope I've given you an idea of how my mind works - or doesn't work - these days.  


PS:  I hope you enjoy the pictures and it makes this post a little easier to read.  I've read that pictures are good to keep the readers attention but I've been in too much pain to try gathering pictures related to the subject.  Since the pictures I used were already on my computer, It was much easier to do.  Hopefully, I'll be able to use pictures again.  Right now, it's time for my morning nap.

This has not been a good week.  My pain has been on a roller coaster and my fatigue levels have been the worse they have been in months.  Insomnia showed up both Wednesday and Thursday nights.  Couldn't sleep until 7am the next day.  That just increases the fatigue and the pain.  I didn't get anything done around the house except vacuuming.  While I didn't really have the energy to do it and Mr. Supportive would have done it when he got home, I couldn't stand seeing the dog, cat and rabbit hair on the floor another minute.  If we can ever afford to do it, we'll have hardwood/laminate flooring instead of a light color carpet.  The dog is constantly shedding his dark hair - it's one of the basset traits he has - and it shows up something horrible on the cream colored carpet.  One of the cats is a calico so her dark hair shows up as well.  Our living room carpet is a dark green.  Why the people that built our house did that, I'll never know.  The rabbit is a light brown and the other cat is what most of us call orange but in the Maine Coon world he's considered red.  Their hair shows up awful on the green carpet.  Since Carter likes to sleep up next to the rabbit's play pen, their light colored hair changes the color of the carpet in that area.

I'm going to look for a fatigue level scale tonight.  It just occurred to me that if  there's a pain scale there should be a fatigue scale.  If I can't find one, I'm going to compose one to use here.  I think it will make it easier for me and those reading this to have my fatigue defined.  Like I said, it's been awful this week and I'm really not sure how to describe the fatigue.

Since I'm trying to save money by couponing, I went over the grocery ads and put a list together and matched my coupons up.  When I went to both Walmart and Target, I rode the electric scooter.  I see it as a sign of my "failure" but I knew that I needed to go all over both stores to get the things we needed.  I also knew that if I tried to walk, I'd never make it.  I've decided to call my insurance company and see if they will pay for one if I get an order from my doctor and find out how much my cost would be on it.  If it's very much, then I'll have to forget about it and continue to miss out on things that require much walking.  It's one thing for me to have to stay home when our friends go out.  It's another thing for Mr. Supportive to miss it because he feels he should stay home with me.  It's not fair that fibro and chronic fatigue have ruined my life.  It's for sure not fair that it's ruining his.  I miss out on so much with my grandchildren because of it. Until I couldn't walk very far, I never realized how much we depend on walking.  I know that sounds crazy but think about.  I'm not talking about your everyday getting around.  I'm talking about  when it comes time to do fun stuff.  Things like going to the zoo or just to the park.  Those are things that unless I have access to a scooter, I can't do anymore.

Back to my shopping yesterday.  I got some good deals and we now have enough body wash and deodorant to last us about six months and I probably didn't pay a total of $10 for it all.  That will be a huge help. Body wash and deodorant cost was not something I paid attention to when I was able to work.  Now that we are living on 40% of what we were then, it's a lot of money.  Especially when you realize that you can not stink or buy a pound of ground beef or a whole chicken.  Bathroom tissue will be my next thing to stock up on when the tp sales comes around. It's another thing that I didn't pay much attention to the cost of but I do now.

I did better on this shopping trip than my last one up until the end of the day. That's when my pain and fatigue decided to show up all at once instead of easing into being there.  One minute I was a Level 5 and the next a Level 8.  That's the way Fibromyalgia is.  One minute you are functioning pretty well and the next you can't function at all.  The fatigue is the same way.

Friday  morning I drove Mr. Supportive to work because it had rained Thursday night and the forecast for Friday was 50% chance of rain.  That meant that I had to go back and pick him up.  When I got home from shopping, I brought in the items that had to go in the freezer or the refrigerator and left everything else in the car.  I set my alarm and went straight to bed until time to pick him up. I'm really not sure how I woke up to go get him but I did.  Usually on payday we go out for an inexpensive dinner but he could tell by looking at me that we shouldn't do that.  When we got home, Mr. Supportive got the groceries out of the car.  I went to bed for what I intended to be a short nap.  That was about 6:45pm Friday.  I woke up about 8am Saturday.  I stayed up long enough to see Mr. Supportive off to work and went back to bed.  I got up again at 3pm.  

With all that sleep, I am still very tired.  I'd like to go to the bookstore with Mr. Supportive to get him a book for Father's day tonight.  Tomorrow is my altar guild's Sunday to prepare and then put away the items used on the altar.  I'm not sure how I'm going to do either one.


My pain is down to a  Level 7 but I hoping it will be a Level 6 since the sun is going down and it's getting cooler.  If I can get it down to a Level 5 by in the morning, I'll be able to go to church.  That's very important to me.

Mr. Supportive has a theory that the heat may be what's making my fibro be so ugly to me.  Our air conditioning is not working very well so the house is not as cool as it should be.  He's sending me to our oldest daughter's later this week to see if being cool will help.  Being with my grandchildren will help my depression for sure.  It get's lonely being home alone, day in and day out. I talk on the phone some days but it's not the same as having someone with you.  I will miss Mr. Supportive more than I can say but I've got to do something to feel better.

It's time for him to get off work so I'm going to go and try and make myself presentable.  I love this man more than I could ever put in words.  Having him love me like I love him makes everything better.