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.

Checking in

It's been a while since I've posted.  It's been a combination of feeling like I've been hit with a Mack truck or being busy trying to catch up from being run down by said truck.  I was getting back to feeling like I'd been run over with a Volkswagen until the rain and cooler weather hit yesterday.  Oh my!!  When it hit it was quick and viscous. My pain went from my normal Level 5 to Level 9 in about 15 minutes. I was out running an errand and thought I was going to have to call a friend that lived close to where I was and see if I could veg on her couch until Bill got off work and could come pick me up.  I decided that I wanted my own bed and made it home driving slowly and on the back road.  Went to bed and only slept about 4 hours but it was enough to keep me up all night.  I've been up since about 8:00pm Wednesday night with the exception of about 2 hours this afternoon.  I'm headed to bed now to hopeful sleep more than 2 hours. 

Check out Apple Creek Cove, my blog where I'm going to attempt to write about ways that I've found to be able to maintain a semi normal level of domestic bliss in spite of my Fibromyalgia, Chronic Fatigue Syndrome, Myofascial Pain Syndrome, Peripheral Neuropathy, Peripheral Lymphedema, Sjogren's Syndrome, Arthritis, four herniated discs, Carpel Tunnel Syndrome, short term memory loss, sleep apnea and depression.  (I need to check my doc's notes because I feel like I'm leaving something out of my collection of diagnoses.)



As I head off to be at 4:13AM, here's my final thought for Thursday:

It's Just the Way Fibro Is

I was shocked when I saw that it had been ten days since I wrote the last post!  I’m not sure why I was shocked because the last ten days have been the usual fibromyalgia ups and downs.  My pain has been higher than normal at a Level 8  instead of my usual Level 4 or 5.  I’ve been trying to pinpoint something that I did that may have started this flare so that I can avoid that in the future.  In true fibro fashion, there is nothing that I can think of that caused it.  It’s just the way fibro is.

I have got so much that I need to be getting done and just don’t have the energy for it.  I’ve said lately that being chronically ill is like having a job.  I just got a certified letter from my Long Term Disability carrier saying that my benefits are only approved till October 28.  While they admit that I cannot go back to my job as a paralegal, they are reviewing my file to see if there is any other job that I can hold.  It apparently doesn’t matter if the job is nothing remotely like what I’ve done before or doesn’t even pay what my benefit it. If that wasn’t enough to make me nervous, my doctors haven’t sent them the requested records.  So Monday morning, I’ll be on the phone begging the docs to send my records in. When the adjustor told me how my former employer had the policy set up, I felt like once again the company was pulling the rug out from under my feet.  One of these days, I’m going to write about my last year at work.  I will always feel that my supervisor had decided that I didn’t “fit” with the rest of the department and used my illness to get rid of me.  Since I have my appointment with the Social Security Disability doctors August 30, I hope I’ll have my SSD approved before they try to pull my LTD benefit check.  Without either my LTD benefit or a SSD check, we will lose our house. My illness has already forced us into the Home Affordability Program.  If you miss a payment when you are in the program, they start foreclosure.  I see no way around that.  Where we will go or what we will do is something that I refuse to think about.  I prefer to pray for God’s direction and His blessings that if my LTD benefit stops, my SSD will start.  All of this emotional and financial strain is just the way fibro is.

Financial problems are nothing new to those of us who are disabled by our Fibromyalgia.  Each day, some of us have to decide if they will have their pain pills refilled or buy groceries.  Some of us who are still working way beyond the time that they should have stopped, has to decide if they can go on for another day, week or month.  Some of us have our bodies make that decision for us when we literally can no longer put one foot in front of the other.  I don't understand how Social Security Disability can justify not having a category for Fibromyalgia.  They have to see how many people are effected by it based on the applications that they receive.  We've worked and paid in to the Social Security system. Why do they make it so difficult for us to get the financial help we are due.  Most of us live a two paycheck life.  When one of us looses that paycheck, it sends our whole world into a tailspin.  Facing the financial unknown causes so much stress that our pain skyrockets.  How do you make responsible decisions that need to be made right now when your pain is off the charts? It’s just the way fibro is.

Mr. Supportive and I have tried to explain fibromyalgia to an older family member many times.  This person believes that I am in pain.  At the same time, they don’t understand that the pain is always there, sometimes better, sometimes worse.  Whenever we talk and I say that I’m more tired than usual or the pain is a little worse, they want to know why.  They ask if I went to bed on time, what I did do make it hurt more.  For several years, I tried explaining it each time.  I no longer have the energy for that.  Now I say “It’s just the way fibro is.”

Fibromyalgia, Lymphedema and Loneliness

My legs are swollen slightly larger than the one on the right.

 I think I've mentioned before that this summer's heat has been really hard on me. I was recently diagnosed with Lymphedema and it has been "introducing" itself to me. My legs and especially my ankles are so swollen that I can barely walk. I'm afraid that they are going to start weeping any time.  The first time they weeped it scared me but I've gotten use to it.  When they would swell so badly in the past, I would often think that it would make them feel so much better if I could just stick a pin in them and relieve the pressure.  I was right, it does take some of the pressure off but too much of a "good thing" can be scary.  Mother's Day I was sewing and felt wet floor under my feet.  It took me a minute to figure out what was going on.  In the mean time a puddle had formed under both feet on my chair mat.  Had a measuring cup been handy, I feel sure I could have captured enough to  measure. 

My doctor has not yet addressed the weeping but I am concerned because everything I've read warns against having any kind of opening in the skin. I looked up Lymphedema on the Mayo Clinic site and this is what it said:

 The reddened skin or rash on both legs (that's me) may signal a deeper, more serious infection of the inner layers of skin. Once below your skin, the bacteria can spread rapidly, entering your lymph nodes and your bloodstream and spreading throughout your body. Recurrent episodes of cellulitis may actually damage the lymphatic drainage system and cause chronic swelling of the affected extremity.  In rare cases, the infection can spread to the deep layer of tissue called the fascial lining. Flesh-eating strep, also called necrotizing fasciitis, is an example of a deep-layer infection. It represents an extreme emergency. 

Isn't that just lovely - NOT!!!! It's hard to rate the pain from the Lymphedema but if I had to assign it a level, I'd pick Level 2.  It doesn't hurt a lot but it is very uncomfortable. If you had asked me 5 years ago if there was a difference between being in pain and being uncomfortable, I'd say there wasn't one.  Where my ankles are so tight from the swelling, I feel like my skin is going to burst open in the creases when I stand up and walk.  My Fibromyalgia pain is a Level 5 right now.  I'm ok but I have to take my breakthrough pain meds.I hate it when I have to do that.

Fibromyalgia causes so much loneliness.  Merriam-Webster defines lonely as being without company (lone), cut off from others (solitary), not frequented by human beings (desolate), sad from being alone (lonesome) and producing a feeling of bleakness or desolation.  Fibromyalgia leaves you feeling all of those things.  Fibromyalgia produces all those feelings.


When you are unable to move around much on your own, you pretty much stay housebound.  It gets the point where you don't want to leave the safety of your home.  I'm home alone five days a week except for the occasional trip to the grocery or drug store.  It's just too hard to get out and go somewhere alone because the pain won't let you have a good time.  

I worry about getting out and becoming too weak due to the pain to make it back home on my own.  My fibro fog makes me be unsure of my ability to make it where I'm going and back home again because I've been out before and not remembered how I got where I was going or how I got back home.  I'm a homebody by nature but this is different.  I can choose to stay home and enjoy it.  I love the amount of sewing, reading and that type thing I get done with it's just me and my sewing machine or me and a book and I enjoy it.  Now, I'm not making that choice and it makes me incredibly lonely.  Its another thing that Fibromyalgia has changed about m y life.

There's another kind of loneliness that comes from your friends (most of whom you discover are more a casual acquaintance  rather than a particularly close friend).  These are the people who prior to your health and your ability to be out and about diminishing, you went to dinner with or "painted the town red".  At first, they still call and invite you like they always have.  As you have to decline their invitations more and more or have to cancel plans at the last minute, their calls become less and less frequent until they stop coming completely.  Your acquaintances don't realize that you do have good days and can get out and have fun.  We may not be able stay out as long as we once did but we would have been out with our friends.  For a short time, we would have been “normal” again. Your real friends, still keep calling, real friends come over and just sit and talk.  Real friends even come over to clean your house and fix dinner for you.

Some don’t understand what Fibromyalgia is and the limits it puts on our bodies. Others do not believe that how bad the pain and fatigue is and call us lazy.  No matter the reason, they don’t know what to say so they treat it like any other uncomfortable situation.  It’s easier for them to avoid the situation than to take the time to learn about our illness.  I prefer to think that most would feel bad if they knew how hurtful their actions were but it’s more likely that they wouldn’t.  This illness weeds out your true friends from acquaintances.

There’s one last group that causes loneliness, emotionally attacks us and treats us as if we are hypochondriacs, lying or are drug seekers.  This group is nothing like the others.  Friends and family can be in this group but most are members of the healthcare profession - the ones that took an oath to do no harm and to work to heal their patients. Often these so called professionals are the most hurtful of all the people we encounter.  There are no tests, scans or x-rays to verify a diagnosis of Fibromyalgia.  Too many healthcare professionals refuse to admit that a condition exists if they can’t find it using technology.  Most are unwilling to accept pressure point testing as verification. I don’t understand why. I believe that a good diagnostician would be able to tell if someone was “faking” it.   Real pain is hard to hide and hard to fake. Many times I’ve told friends and family that I’m fine only to have them tell me I didn’t look fine so tell the truth.  Real pain shows in your eyes and on your face.   Surely doctors are taught how to recognize signs of pain in their patients. 

It’s important to become your own best advocate when dealing with physicians. Not only will it benefit you, it will help other Fibromites (those who suffer from Fibromyalgia) that come after you.  Fibromyalgia is a real disease and the pain is real. Do not settle for a doctor who does not take you and your pain seriously. You deserve to have your pain properly treated.  There are doctors who will believe you so never stop looking until you find a doctor who will work with you and treat your illness correctly and aggressively.  I’ve learned that just because a doctor is a specialist in something that doesn’t seem to be related to Fibromyalgia, he/she can be excellent at managing your Fibromyalgia. My awesome pain management doctor is a psychiatrist who switched to pain management exclusively.  When I was referred to her, I was afraid it was my doctor’s way of telling me he thought I was nuts. The Tramadol he had prescribed was no longer managing my pain even taking double the maximum dosage.  I was so desperate for help with the pain that I went to see her.    If you are able, explore every referral you get.  I know from personal experience that insurance companies have some interesting ideas about how often we should go to the doctor, what tests the doctor should order and what medicines should be prescribed.  I am embarking on an effort to get my insurance to pay for my bandages to treat my Lymphedema.  They pay for the related doctor’s visits, medication and physical therapy.  It makes no sense to not pay for the bandages.  That will be another post soon.  I’ll admit that the odds of them approving the bandages are slim to none but if I don’t push the issue I’ll always wonder if they would have if I asked.

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.

Of All the Things I've Lost, I Miss My Mind the Most

Yesterday was a beautiful day. The sun was shining and my wonderful hubby was off. It was a little on the warm side hot as blue blazes once again but it didn't seem to be nearly as humid as it has been.  Since Mr. Supportive (I keep reading blogs with "cute" names for their husbands so I thought he deserved one!) was off, I was able to get up, take my morning meds and go back to sleep until about 11. I do so much better when I can sleep almost straight through a 12 hour night.  We had a relaxing morning and then went to visit his mother.   My pain has gone back up to Level 4 and is pushing a Level 5. 

My "normal" every day pain is usually somewhere in between Levels 4 and 5.  The more active I am, the higher the pain goes. If you'll remember, last Tuesday I went grocery shopping. My pain jumped up to a Level 7  before I got home.  The way Fibromyalgia pain comes and goes is one of the worse aspects of this disease.  It's next to impossible to make any kind of plans. Many a time we've had plans that I felt confident I would be able to go through with because I had been at my normal pain level for several days. Sometimes, getting ready to go out will cause the pain to go up so quickly that we never leave the house.  Other times, we'll actually get where we are going before the pain escalates to an unmanageable level. When this happens, I try to suck it up and fake it.  When I'm doing this I have to try and stay away from Mr. Supportive and a few friends who can read my face like a book.  If they realize how bad I'm hurting, they worry about me and making me comfortable instead of having a good time.  Times like these are when I feel like a burden to my family and friends. I have become someone that they have to take care of instead of having fun.  I have become someone that my family and friends can no longer depend on to do what I say I will.


No longer being dependable was one of the hardest things to deal with when my illness got to the point it is.   I was the one that everyone knew they could depend on to get things done correctly and on time.  That's no longer the case.  The Fibro Fog has taken away the sharpness I once had.  Tasks that I once performed quickly and correctly are now a struggle to complete in three or four times as long and no matter how many times I proofread, it will be riddled with mistakes.  

Writing these blog posts is an example.  Once upon a time, I would have taken less than an hour to write something like this.  It would have had more and better content with pictures to break up the rows and rows of text. Now it takes me two or three hours to write a short post. I forget what I was saying in the middle of typing a sentence.   I loose track of how many times I have to proofread once I finally get it written.  Not only do I misspell words or use the wrong word, I leave entire words out.  Since I have trouble figuring out what I was trying to say, I'm sure that y'all would be totally lost.  It's frightening to think about how badly my writing skills have deteriorated.  Loosing mobility is hard to deal with but there are so many products on the market to increase your mobility that it's not a problem.  Loosing my thought process and writing skills - that's a much different problem.  There are no products on the market to help you remember what you were saying when your mind went blank. There are no products to help you learn new tasks and retain that knowledge.  There are no products to help you make decisions.  There are no products to allow you to grasp what is being said in a conversation so that you can contribute to the conversation.


Because of my memory deficit and foggy thinking, even if my body would cooperate and allow me to do some kind of work outside of the home, I can no longer be dependable for an employer. I can't guarantee that I would be at work, on time everyday.  I can't guarantee that I could meet deadlines with a quality product. I would be a detriment to the organization in the same way that I use to be a huge asset.


This is my life with fibromyalgia pain.

Fibromyalgia is Such a Fickle Disease

Having fibromyalgia is much like dealing with a teenage girl. Not only can you not count on what may be the most important thing in her life tomorrow, you can't count on it to last an hour.  The majority of the day yesterday my pain was Level 5: You can't ignore this pain for more than an hour, even with OTC Medications. You cut back of all activities except the most important ones. Work is possible, but just barely. That's where it was when I got up this morning. I sat on my kitchen stool to fix Bill's lunch and took my morning medicine.  When he left for work, I went back to bed and slept another hour and a half.

When I woke up, I felt like a different person. I don't know why it surprised me because on Tuesday it had changed like that while I was shopping. I've taken it easy today and my pain has stayed around a Level 3: Your minor pain is strong enough to get your attention. You resort to Over-the-Counter (OTC) medications. I am really excited that it's low because tonight I'm going to have a repeat sleep study.  I'm afraid that it would have been very hard to sleep with all those electrodes stuck in my hair and in a strange bed if my pain was up.  Of course, being as fickle as fibromyalgia is, it could change between now and 8pm when I check in at the sleep study center.

I had a sleep study probably five years ago because Bill was desperate to find a solution to my snoring.  He was on the road for work and roomed with a guy with sleep apnea.  During the night this guy became disconnected from his Cpap and Bill woke up to an all to familiar sound.  When he came home we went to see a sleep specialist and sure enough, that was the problem.  It was so good to get a good nights sleep! The entire family was grateful to get one as well.

I am having the sleep study tonight because the ultrasound of my heart showed that I have an enlargement of my right ventricle.   My cardiologist said that normally this is from sleep apnea.  I truthfully don't understand why he is having me retest since I've already been diagnosed but I trust him to be doing the right thing. If I can remember it, I'm going to ask the people at the sleep center why.  


I've had so much testing done recently trying to find out exactly what is wrong.  My edema isn't just edema, it's lymphedema. If compression hose and specialized lymphedema therapy doesn't solve the problem, then I'll have to see a vascular surgeon.  I still don't understand all I've read about it but apparently there are valves in your legs that open and close to allow the fluid to circulate through your body.  Lymphedema is caused by those valves not functioning properly.  I am a high risk for developing the skin infection called cellulitis. I already have what looks like a sunburn from half way down between the knee and ankle on both legs.  Many days I have what is described in medical writings as a 'tight, glossy, "stretched" appearance of the skin'. When my legs are tight like that, they literally weep fluid out my skin.  At first it was a minor annoyance but within the last month it has gotten to the point that the fluid literally puddles on the floor under my feet.  Now we are trying to figure out why I have this problem.

Next month I'm going back to the neurologist because my cardiologist wants me to have a MRA to clarify the findings of the MRI that I had several weeks ago.  My cardiologist isn't convinced that the ischemic changes that showed up are from past ministrokes.  The MRA will either confirm that I have had the ministrokes or that I have multiple sclerosis. 

It would be hard enough going through this testing for a "healthy" person.  It's a huge challenge going through it with fibromyalgia. I can't not go for my appointments or tests even if my pain is at the top of the chart.  They are too hard to schedule in the first place without trying to reschedule them.  I will be so glad when we finally have answers.  In the meantime, I'll continue to trudge on through with my fickle fibro.

Just a quick check in

It's almost 1am Tuesday night/Wednesday morning. I'm back in bed after my early evening nap. I should have kept my mouth shut about hoping to have 3 good days in a row. Monday I slept 14 or 15 hours until a wrong number called and woke me up. I felt awful about sleeping because it was Bill's day off. Bless his heart, he can tell what's going on with me even when I can't or at least won't admit it. Today was even worse and I'm starting to think I need to go to the doc but I don't know which one. I hope I'll feel up to writing to
catch this up tomorrow. Until then, good night n