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)

Researchers Document Severity of Fibromyalgia

It's been documented so many times that it's not in our heads.  Why don't the majority of doctors not believe research studies by their colleagues?

Researchers Document Severity of Fibromyalgia
Posted: May 26, 2010

You look just fine and nothing is broken, so why do you say you have so much pain, and why don't you have the energy to just get up and go? These are the frustrating questions that people with fibromyalgia face every day. A research study headed up by Fausto Salaffi, M.D., in Milan, Italy, documents the serious impact fibromyalgia has on a person's health-related quality of life.*

"Patients with fibromyalgia report disabilities in daily living activities that are as severe as those reported by patients with rheumatoid arthritis, and more severe than those reported by patients with osteoarthritis or other painful conditions," states Salaffi and co-workers. But how do fibromyalgia patients really compare to rheumatoid arthritis patients when using standardized questionnaires to evaluate both groups? This was the question that Salaffi's study sought to answer.

Salaffi assessed a large group of subjects, which added strength to his study. He enrolled 380 fibromyalgia patients, 693 people with rheumatoid arthritis, and 1,579 healthy control subjects. All participants completed a validated instrument (Short Form 36-item Healthy Survey Questionnaire, SF-36) that measures the following eight components of health-related quality of life:

(1) physical functioning,
(2) role function - physical aspect,
(3) bodily pain,
(4) general health perception,
(5) mental health,
(6) role function - emotional aspect,
(7) social functioning, and
(8) vitality.

For the most part, the scores for each of the eight components of the SF-36 were the same for both the fibromyalgia and rheumatoid arthritis groups. However, fibromyalgia patients scores substantially worse on vitality. Feeling so devoid of any energy, it is no surprise that fibromyalgia patients also scored worse on the mental health component of the SF-36.

"Fibromyalgia patients consider widespread pain, fatigue, and unrefreshing sleep to be the factors that most significantly limit work performance, and our findings are consistent with those of previously published clinical studies," writes Salaffi and co-workers. "Pain is one of the most frequently reported, bothersome and disabling symptoms" he says, adding that the "pain may be more severe than in rheumatoid arthritis."

So how do fibromyalgia patients measure up to the healthy controls? "Comparing adults without frequent pain, patients are 2.6 times more likely to report poor overall health if they experience pain several times a week, and 11.8 times more likely to do so if pain is experienced every day" ... as it is in people with fibromyalgia who have daily widespread pain.

The fatigue factor, which is captured in the terrible vitality score, also plays a major role in how you feel. "Fibromyalgia patients seem to have higher overall fatigue levels and experience greater daily variability than those in other pain groups. The findings of sleep studies suggest that 70-90 percent of fibromyalgia patients complain of non-restorative sleep, which accentuates pain, musculoskeletal stiffness and fatigue."

Comparing the eight component scores of the SF-36 for fibromyalgia patients to the standardized scores established for other illnesses, Salaffi writes that fibromyalgia "resembles the pattern of restrictions generally found in patients with musculoskeletal disorders or other chronic conditions such as congestive heart failure, chronic obstructive pulmonary disease, hypertension, recent acute myocardial infarction, type II diabetes, and malignancy."

If you are functioning well with your fibromyalgia, all the power to you. More than half of patients with rheumatoid arthritis can still maintain function and certainly not everyone with a chronic illness is faced with having to quit their lifelong career. However, if you are struggling or find yourself unable to hang onto a job or continue with your normal chores, let your family know that your exterior lack of visible symptoms or blood tests are not a valid indicator of how you feel. Explain to them that the severity of your symptoms are equal to that of the many serious diseases listed above. Looks can be deceiving.

* Salaffi F, et al. Clin Exp Rheumatology 27(suppl 56):S67-S74, 2009

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? 

Fibromyalgia - It's a Lifetime Contract

I was going through some old files on the computer and found some things I wrote before I ever started this blog.  These were my feelings in 2010 about a year after I was forced to retire.  I'll be posting them over the next few days. Hope you enjoy them!

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

Fibro came by tonight.  It’s Sunday night and Fibro seems to think that insomnia is a good thing on Sunday nights, so she brought some by and forced it on me.  I did everything I could today to not anger her but apparently it wasn’t enough.  I came straight home from church and changed into loose fitting clothes.  I didn’t do any housework or anything like that.  The only thing I did was sit at the sewing machine and enjoy myself.  I even got up and moved around and didn't sit there for long at a time.

Fibro was really nice.  Well, at least she thinks she’s being nice.  Fibro reminded me that she took care of that job that I had to get up and go to.  Now all I have to do is lie around, hurt and be tired all the time so why not stay up all night.  I loved my job.  I worked so hard to become a paralegal.  I love the law and contracts were my favorite thing to do.  Talking to the recruiters and the potential employees was so much fun. I enjoyed preparing their draft contracts and that let me know that I had chosen the right career. I will admit that I had the worse boss I had ever had in my professional career.  The co-workers weren’t so great either.  All I wanted to do was work a year so I had experience and then look for a job with a law firm.  

But no, Fibro couldn’t stand that I had plans for my future.  She had to stick her nose in my business and start taking away my memory.  Slowly she would sneak a bit of information out here and there until I couldn’t remember something from Monday to Wednesday.  Then Fibro snuck the pain in.  I could never get comfortable in my chair.  My back and legs hurt all the time and my hands would go to sleep if I held the phone in one hand for too long.  But she wasn’t happy with that.  Oh, no.  She wanted really show me what all she had to give me.  The pain got worse and worse until finally I could barely get dressed in the morning.  And the fatigue, Fibro threw a lot of fatigue in the mix.  When I finally got dressed and made it to work, the parking lot was yet another obstacle to face.  Walking to the building seemed like climbing Mt. Everest.  I could barely pick my feet up.  I guess Fibro put concrete in my shoes because they had to weigh 500 lbs.  So many times, I thought I was going to have to sit down in the street and rest to make it to the building.  Seems I have a life time contract with Fibro with no loop holes to void the contract.  She’s here to stay.  There’s nothing that I can do but watch her continue her hostile takeover of my body.

I have other lifetime contracts but they are not like my contract with Fibro.  I chose to make them and they give me joy and happiness, not pain and sorrow.

I have my marriage contract with Bill.  I love carrying that out.  I have the most wonderful, loving husband who does all he can to care for me when Fibro drops by.  In a way, Bill has a contract with Fibro too.  She’s taken so many of my hopes and dreams for the future and they were his hopes and dreams too.  We are a team, bound together by our love and our vow to God to be with each other “in sickness and health, till death do us part”.  He says I’m not a burden but I sure feel that way.  My Bill is always there for me even if he doesn’t know what to say. After all, what is there to say about Fibro.

Then there’s my contract with my children.  I have two of the most wonderful children that a mother could ask for.  They have taken care of me through my emotionally abusive marriage to their father and were there supporting me when I finally took their advice and ended it.  They were there with me when I was living on my own for the first time in my life.  And they are here for me now that Fibro is a part of my life.  They help to take up the slack and pitch in and help with the things that I can do longer do around here.  Like Bill, they’ve never done anything to make me feel that they love me less or consider me a burden to have to help now that Fibro is part of our family.

My last lifetime contract is the greatest of all.  It’s my contract with Jesus, my personal  savior. I can’t imagine what it must have been like during Jesus’ time on earth to actually be in His presence and hear His voice.“Now we believe, not just because of what you have told us, but because we have heard Him ourselves.  Now we know that He is indeed the Savior of the world.” (John 4:42)

I’ve not heard Him like they did but I have heard Him as He talks to me through His Word and in my heart.  I believe that He loves me unconditionally and one day I will live with Him in a wonderful, pain free body in a glorious world free of sickness and full of joy.  I know that He hears me when the pain and stress of Fibro is too hard to bear and I cry out to Him.  I feel His loving arms around me holding me close.   His “promise revives me; it comforts me in my troubles”. (Psalm 119:50)

It’s not for me to know or understand why I was given the contract with Fibromyalgia to bear on this earth.  I do know that God has a reason and I pray that in some small way I am able to carry out the work He has called me to.

Remember our Service Men and Women, Past and Present Today

Please take a minute to say a prayer for our service men and women and their families. Those currently serving, those who have served and those who lost their lives in defense of our freedoms all deserve our thanks and prayers. Their sacrifice is great so that we can freely live the American Dream.

I'm Still Alive!

Just checking in to say hello and let you know that I've not totally abandoned the blog.  I think I wrote about downsizing to a 2 bedroom condo in August last year.  Well, that didn't work out.  We were going nuts in such a small space so when our lease was up we found a house. Yep, two moves in six months. Yep, it did me in.

We moved the the last week of February to a cute little farm house out in the country.  So far out in the country that satellite internet is our only option.  :-) I was in bed most of March recovering from the move and the cold weather continuing through April didn't help my recovery.  Now that it's finally warm I'm making progress unpacking our things and finding a home for them.  It's very slow going and I'm getting rid of more and more stuff. I'm hoping our next move won't be for quiet sometime but I'm determined there will be a lot less to move!

Since we don't have internet at home yet, I'm getting to know the ladies at the local County Library really well. LOL I make the 10 mile drive into town several times a week to use the computer.  To say that I have had internet withdrawals is an understatement. I had just discovered the world of Pinterest before we moved and not being able to browse all the wonderful sewing and primitive decorating ideas there has been hard to adjust to.

I'm headed to see my grandchildren my daughter and her family tomorrow for about 10 days.  I think that I have things put away well enough that I can start writing again and then making the journey to the library to post.  It may take me a few days after I get back to rest but I'm ready to blog again.  Since my blogging has been hit or miss the last year you wouldn't think that I'd be missing it but I am.  Now that I've recovered from moving and some other stresses in my life, my pain is at a point where I actually feel like writing.

My time on the computer is almost over so I'll sign off.  Look to hear from me again soon.

A Day to Pray

As Christians, we need to constantly be in prayer for our country and our leaders.  We are at a place in history that finds us facing challenges that I would have never believed would happen in the United States of America.

Sunday, January 20, 2013 has been declared a Day of Prayer where we will ask God to grant our leaders, local and national, the wisdom they need for the road ahead. We gather to ask God for forgiveness and healing of our land and to bless our Country and her people. This is not a political rally but a spiritual event and hopefully one that can help bring us together as we move forward as a nation.

O God, you have bound us together in a common life. Help us, in the midst of our struggles for justice and truth, to confront one another without hatred or bitterness, and to work together with mutual forbearance and respect; through Jesus Christ our Lord. Amen.

O Lord our Governor, bless the leaders of our land, that we may be a people at peace among ourselves and a blessing to other nations of the earth. Lord, keep this nation under your care.

To the President and members of the Cabinet, to Governors of States, Mayors of Cities, and to all in administrative authority, grant wisdom and grace in the exercise of their duties. 

Give grace to your servants, O Lord.

 

To Senators and Representatives, and those who make our laws in States, Cities, and Towns, give courage, wisdom, and foresight to provide for the needs of all our people, and tofulfill our obligations in the community of nations.
 

Give grace to your servants, O Lord.

To the Judges and officers of our Courts give understanding and integrity, that human rights may be safeguarded and justice served.

Give grace to your servants, O Lord.

And finally, teach our people to rely on your strength and to accept their responsibilities to their fellow citizens, that they may elect trustworthy leaders and make wise decisions for the well-being of our society; that we may serve you faithfully in our generation and honor your holy Name.

For yours is the kingdom, O Lord, and you are exalted as head above all. Amen.

From the Book of Common Prayer (1979)

What a Way to Start the New Year

Back in October, I wrote about how I had new things planned for this blog.  The plan had been to launch the new and improved “My Life with Fibromyalgia Pain” January 1.  As you can tell, that didn’t happen.

We moved the end of August to downsize.  I couldn’t keep up a 1,500 sq ft house any longer and Bill was having trouble keeping up the half acre yard and helping me inside. Unfortunately, we went a little lot smaller than we should have.  I’ve been trying to find a place to fit just the stuff we use everyday somewhere in our 1,094 sq ft apartment.  (406 sq ft is a lot more space than I thought it was.) I'm not finding room for things no matter how hard I try. So sometime in March we are moving again.  I can’t believe I’m excited about moving twice in seven months but we can’t keep living in this little space.  We aren’t even living out of boxes because there are boxes filling the garage that we have nowhere to put to go through them.  And then there’s the huge rented storage locker.  Sigh…

We’ve found a wonderful 1920s Arts and Crafts home in a small town just across the Tennessee/Mississippi line. Having an Arts and Crafts home has been dream for both of us.  Here in Memphis, it wasn’t ever going to happen.  Because of the neighborhoods they are in and how few are available, they are way out of our price range. Several people have asked why we want to leave Memphis.  I’ve nothing against Memphis other than it’s loud; there are too many people, too much traffic, too much crime and very few people who care about the people around them.  I’m looking forward to being part of a place where Southern Hospitality is still practiced and they want to know your name. The town still has a vibrant downtown square with the county courthouse in the center.  The drug store still delivers and from what we’ve been told it won’t take long for the businesses we go in a lot to know our names. 

I have quite a bit of information gathered including an outline for my “How to Keep a Clean and Organized Home in spite of Fibromyalgia” ebook.  There’s one large problem.  It’s all on the hard drive of my computer that decided it had had enough and refused to do anything else.  Couldn’t get my files off.  Couldn’t get the pictures that I was organizing to burn to a disk. I’m sure that somewhere in its computer mind it’s still laughing at me,

Microsoft Clip Art

Our youngest son built the now dead computer for me several years ago when he upgraded his.  I was not looking forward to telling him that I thought I had killed it.  When I finally did tell him, he wasn’t upset.  He was expecting it not to last much longer.  Seems that although the outside looked really nice, everything on the inside was 5 or 6 years old.  Apparently that’s really old for computers.

He promised me another new to me computer when he came down for Christmas.  In the meantime, I had to learn to use my hubby’s Mac.  (No offense to Mac user but I hate it.)  Unfortunately, Dave wasn’t able to work his schedule to come down from Ohio but he did UPS me a new computer!  It has the latest Windows operating system on it (is that the right word for it?) so that’s been a learning curve but I’m back on my own PC!  Hopefully, he’ll be able to come down in March and retrieve the information on my old hard drive.

Microsoft Clip Art

Probably the biggest reason I'm behind on my blog plans is that I came down with what the doctors in our area are calling the 2 week flu.  In my case, it’s been more like 4 weeks. I'm sure the havoc that the fibro plays on our autoimmune system is the culprit there.  Mid December I developed what I thought was a simple cold.  When it was still hanging around a week later, I went to see my Advanced Nurse Practitioner.  She said it was a sinus infection and gave me 10 days of antibiotics. That was the 18^th. I had plans to visit our oldest daughter and her family the 26^th – 31^st and thankfully I was much better Christmas Eve.  I felt well enough to do Christmas with our family here and the 26^th I climbed aboard the City of New Orleans to head down to Jackson, Mississippi.  Other than arriving 2 hours late it was a good trip and I still felt well. 

About the 29^th that all changed.  The cough came back, the fever came back and I was miserable. I climbed back on the City of New Orleans the 31^st with my blanket and my cPap and slept the 5 hours home. We had planned to spend New Year’s Day with our family here but I had to back out. I was back to being so sick I could barely hold my head up.  January 2 saw me back at the doc’s office.  This time I walked away with two sore hips – Rocepherin in one side and prednisone in the other – and another prescription for an additional 10 days of antibiotics and one for prednisone.  I finished off those antibiotics earlier this week and so far, knock on wood; I think it’s gone.

So this is how my life has been the last few months.  My plan is to post something everyday even if it’s a picture or a joke because we definitely need to laugh.  I really do believe that a smile can take our mind off of our pain and the other hardships it causes even if it’s just for a minute.  I may even share how I’m coming along with finding places for the things we’re going to need for the next 6 weeks or so.  I’m also organizing and repacking things that family and friends packed because I was in a huge flare when it came time to move.

Lymphedema - It's Really Wierd

My "severe edema - lymphedema - severe edema - stasis dermatitis - lymphedema"  has been really weird for the last six months or so.  That's the only word I can think of.  I have always had trouble with edema during the summer but when fall comes around and the temps dropped, it pretty much goes away.  I actually have ankles through fall, winter, spring and even a little of summer.  This summer it came back with a vengeance.  I was back to only being able to wear my stretched out shoes and had a hard time walking. The hard time walking was a new problem from it for me.

An example of how severe swelling can be

For several years, my legs have "weeped" in the summer when they were so swollen.  They were so swollen that they could no longer hold the lymphatic fluid (did you know that we have lymph veins they carry lymph fluid down to your feet and back up again?) that collected in my legs and it was coming out through my skin.  It's just as gross as it sounds and it can range from a tiny drip to feeling like you've turned on a faucet.  Tiny drips feel weird but you get use to it and I keep a hankie close by to blot them.  The "faucet" weeping is scary.  I have one of those hard plastic things so you can roll your office chair on carpet under my sewing table.  Mother's Day this year I was sewing away when I moved my foot into what I thought was a puddle of water.  It wasn't water.  It was lymphatic fluid.  About a half cup full.  From my right leg.  I told you it was gross.

As the summer progressed, my shins became red and warm.  They were angry looking enough that  I  broke down   that Bill insisted that I make an appointment with my Nurse Practitioner to see what was wrong.  Not only did he insist on my going, he spent his day off at the doc's office with me so he got her diagnosis first hand.  The answer did not make either of us happy. 

Stasis Dermatitis Example

The red, warm and angry places on my shins was stasis dermatitis.  I had never heard of stasis dermatitis but when she started mentioning cellulitis she got my attention.  She even mentioned hospitalization and IV diuretics to get it under control.  We left the office with an antibiotic  prescription to hopefully fend off full blown cellulitis (it worked), a prescription for a strong diuretic and one for surgical compression hose.  I was also supposed to stay off my feet and keep them elevated as much as possible.

It was not a good time for staying off my feet.  This was in July and I was sorting, giving away, selling, throwing away and packing for us to be out of our house by August 31.  Out of our 3 bedroom house, with a big attic and a garage full of junk mixed in with the good stuff.  And we downsized too.  From a 1,500 square foot three bedroom house to a 1,094 square foot two bedroom condo.  I had to sort through and get rid of lots of stuff.  And she wanted me to stay off my feet. And keep them propped up.  It made life interesting.  

I hit Google looking for information on lymphedema and stasis dermatitis thinking that maybe I could show Bill that it really wasn't as bad my NP had made it sound.  What I read really made me get serious about staying off my feet as much as I could.

Livestrong.com has a good article on the 5 Things You Need to Know About Stasis Dermatitis.  Here's my summary of the 5 things:

1. Stasis dermatitis is a skin condition on your lower legs caused by excess fluid building up under the skin. It cause large sores, bacterial infections of the skin, difficult-to-heal leg ulcers or even bone infection below the ulcers. Like our fibromyalgia, this can be a chronic condition but it can be managed once you determine what is causing the edema.
2. Medical conditions that cause poor circulation cause stasis dermatitis when the excess fluid build up to severe edema.  When that happens the blood can't do it's job of taking care of the cells or eliminate waste products. This causes your skin to be malnourished and ulcers begin to form. Because the skin is malnourished, ulcers may open that are extremely difficult to heal due to lack of proper nourishment from the blood.
3. When your lower legs, especially your ankles start to swell, keep a careful watch for stasis dermatitis.  Some people (including me) have a deep ache in the legs. If you skin becomes thin and/or thick and dark it's time to have your doctor check it out. The skin will get really dry and itch like crazy!  DON'T SCRATCH!!!  At this point the skin is so thin that you can open your skin causing them to bleed.  Open skin invites infection.
4. To treat the stasis dermatitis, your doctor will look for the illness causing you to retain so much extra fluid and get that under control. How it is controlled depends on the cause. (In my case it's caused by venous insufficiency.)  It's very important to improve circulation to the legs to reduce swelling. Compression stockings help but trust me putting them on can be very painful.  One of my fibro symptoms is being tender to touch.  The swelling makes it worse so I was in tears when I put my hose on for several weeks. Prop your feet up anytime you can.  If you can prop them up about your heart, that's even better.  If you've developed skin ulcers your doctor may treat them by prescribing antibiotic ointments and medicated compresses.
5. Prevention is important. If you have a medical condition that restricts circulation to the legs, take precautions to prevent stasis dermatitis before it gets so bad that ulcers begin to form. If you sit or stand for long periods of time, try to take a break every hour or so to walk around and get your blood moving. I've find that my swelling gets really bad when I loose track of time sitting at the computer.
   
   
   I hope this helps take some of the mystery out of lymphedema.  You can find more information at the websites listed below.
   
   The National Lymphedema Network
   Lymphatic Research Foundation
   The National Library of Medicine
   The Mayo Clinic

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.

Independence Day

Please say Thank You to active duty members of the military, reservist and veterans that you know or meet for protecting our freedoms.

Thank their families as well.  The spouses keep things going on the home front so that those in the military can complete their mission without worry for what's going on at home.  It's a hard task to be Mom and Dad.

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.

 

It's Been a Rough New Year

My fibro pain has finally gone back to it's normal level four or five. It's been a great blessing to not be in as much pain as I had been having.

Things were going pretty well until Tuesday this week.  That when my pain jumped up to a level ten. But it wasn't fibro pain.  It was some of the most severe chest and stomach pain I've ever had.  I tried to ignore it.  I tried to find a position where I got some relief. Nothing worked so I ended up calling Mr. Supportive to take me to the ER.

That visit was a nightmare.  You know how those of us with chronic pain get labeled as drug seekers?  I feel sure that I was labeled as soon as I got there.  You know how sometimes when the pain is so bad that you can't breathe normally and you breathe through your mouth very quickly?  The nurse told me I was having an anxiety attack and if I would stop breathing so fast the dizziness would go away.

Read about my "wonderful" adventures in the ER here.

I'm going to be away from the computer for a few days playing grandma.  Here's hoping I report back good things pain wise!

Hello January 5!  It's January 5 and I've not posted since January 1 so I've already broken one of my life changes for 2012.  It's been a rough couple of weeks since Christmas.  You can read about it over at Rambling Thoughts of a Southern Lady.  My plan is to post different information on each of my blogs but for now, I'll be linking them up to Rambling Thoughts.

My pain level has been pretty steady at Level 5 or 6. I've been grateful for that but really wish it was a Level 4 or 5. You may remember that last month,  my pain management specialist, Mr. Supportive and I made the decision to cut my pain meds back a little. (You'll find that post here.)I've definitely have clearer thought and Mr. Supportive said last night that I've snapped at him only once.  I'm glad that cutting back the meds has accomplished what we set out to do. The down side is that my pain has been in the Level 5 or 6 range for the last three weeks.  I'm really hoping it's because of this nasty weather we've been having and that when the temperature stays constant and it quits raining it will come back down to a Level 4 at least some of the time.  I'll keep you posted on how it goes.

Don't forget to go and read about my latest trials and tribulations over at Rambling Thoughts of a Southern Lady.

"See" you tomorrow!

A New Year, A New Start

It's 2012!  Hard to believe isn't it.  My fibro pain (Level 6 or 7) messed up our New Years eve plans.  As if the pain and fatigue wasn't enough, I had a horrible cold and a 101.4 fever.

Our plans had been to have "Christmas" with our godchildren and their parents.  I hated having to cancel but I knew I was in no shape to go anywhere and have a good time.  I was also concerned about passing on what ever I had in case it wasn't just a cold.  Our oldest goddaughter is recovering from surgery and because of that she doesn't have many days that she can miss school  Her sister turns 2 next week and their mom is expecting our third godchild in June.  With all that they have going on, I didn't want to add to it.

I'm still in at a Level 5 or 6 pain wise but I am much better than I was this time yesterday.  I am very grateful for that improvement.  




I'm going to "cheat" a little on this post and send you over to my blog, Rambling Thoughts of a Southern Lady for my first post of 2012.  I'm not making resolutions this year.  I'm making life changes.  I'd love to hear what your plans for the New Year are!


Here's one that I recommend we all take on:

Photo credit:  Fibro TV