Monday, June 27, 2011

Grandchildren, Travel and Pain - They Can Go Together. If You Plan It Well

We live about a three hour drive from our oldest three grandchildren and about a two and a half hour drive from the youngest two.  It goes without saying that they are the apple(s) of our eye(s) and we miss them terribly.  Up until now, it's been really hard for me to visit the oldest three  I've still not visited the youngest two although Grandpa made the trip last week.  I had not seen the oldest three in at least six months.  Since my pain had stayed in the Level Four to Level Five range for most of the month (I even had some Level 3 days!), Mr. Supportive and I decided it was time for me to come see the oldest three.  I posted about Mr. Supportive's theory that the heat was really getting to me plus the depression from both the Fibromyalgia and not having seen my grandchildren in so long wasn't making dealing with the Fibromyalgia any easier. I was in the delivery room when each of them were born and even cut the cord of my youngest granddaughter.  We seem to have a lot closer relationship than some of my friends do with their grandchildren and I want to keep it that way as long as I can. I've always had a close relationship with my daughter and I missed seeing her.  She's been up several times in the winter and spring to help with deep cleaning I can't physically do and also helping me get rid of a lot of clutter in closets and kitchen cabinets.  She's really brutal!  Monica has watched so many episodes of TLC's Clean Sweep that she sounds like Peter Walsh, the organizer on the show.  She is good enough at it that she could to it for a living.

We decided that I would come down so I went on line and made a reservation for the City of New Orleans and was able to specify that I wanted a lower.  I am so glad that I'm able to ride the train from Memphis to Jackson.  It's the only way I can make the trip without a lot of pain.  If we go by car, I end up having to stop every hour or so to walk around so that my muscles don't get stiff.  Sometimes stopping doesn't help.  On the train, I can get up and walk around, keep my feet elevated using the foot rest, use the restroom, get something to eat and most importantly, I can stretch out and take a nap.  Usually, I take a nap all the way to Jackson.  Since there are 110v outlets beside each seat, I am able to plug in my CPAP and get good sleep.  

This trip I was finally able to get a Lower Level Coach Seat.  I was really excited because they have always been sold out when I traveled. Having my seat on the same level as the rest room was awesome.  It takes way more effort than I have to give to get up the stairs to my seat and back down again. Not having to deal with that made it so much easier.  The train trip can push my pain level up but this time it didn't  and I know it was not having to walk the stairs that made it easier.  When I got on the train, my pain was Level 4 (my "normal") and when I got to Jackson it was a Level 5. We came straight to my daughter's and after saying hello to everyone, I took a good nap.  When I woke up, my pain was almost back to a Level 4.  By the next morning, I was at Level 4 again.

I promised my oldest granddaughter, Anna, that we would sew today so I'm off to do that with her. It makes me so happy that she is interested in learning this timeless art. The rest of this week I'm going to talk about how I've explained to the 7 and 9 year old what is wrong with MiMi and why I have to take more naps than they do.  It is my hope that others will read this and then take the information and apply it to how their family deals with Fibromyalgia.  We found that even at 4 and 6 they were able to understand basic explanations.  For instance we started out telling them that my muscles and legs didn't work right anymore so I couldn't walk and run like I use to.

Grandchildren can be taught about your pain and limitations.  Doing so rather than ignoring the situation will make a huge difference in everyone's happiness and enjoyment of your time together.


I've decided to keep a photographic record of how my Lymphedema is doing each day. I'm putting it at the bottom so that it is easy for those who do not have it and/or have a weak stomach can avoid it.  The picture shows how the skin across the top of my feet is so tight that it's shiny. I keep them elevated as much as I can but in hot weather it doesn't seem to do much good.  I'm drinking lots of water but it doesn't seem to be helping.  Thankfully keeping them propped up does keep the pain down.  I am most concerned about the way they are a light red color from my shins down.  I've also noticed a place like that on my left leg just above my knee.  The light red color is a sign of cellulitus so I'm keep a good watch on that.  I forgot my tape measure and my 4 year old granddaughter decided to cut her mom's into little pieces. Tomorrow I'm going to get a tape measure and I'll begin recording the size of my legs.

Sunday, June 26, 2011

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.

Tuesday, June 21, 2011

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.

Saturday, June 18, 2011

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.

Wednesday, June 15, 2011

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.

Tuesday, June 14, 2011

Fibromyalgia - She Rules My Life

Today was the best day I've had in awhile. The fatigue was still bad this morning and I went back to bed as soon as Bill left for work. When I woke up about 1:30 I felt much better. My pain was a Level 3 most of the day but as I've been more active it's coming up and it is quickly approaching a Level 4.

For my pain to be so low is not normal.  I wish that it was.  It would make my life and my family's life so much easier.  Sad isn't it?  I know Fibromyalgia all to well.  I know that she will not make my life easier.  Fibromyalgia will do everything she can to make my life difficult.  Fibromyalgia takes away the joy of a good day because you know the other shoe will fall. You know that the pain will return. You know that not only will it return but it could come back with a vengeance like it's never been before.

It rained today and brought the temperature down.  That was a welcome relief. Had the lights not gone out,  I would have gotten a good bit more done.  I did manage to pick up a lot of clutter that was laying around.  It made the house look better and in turn, I felt better.  Tomorrow I hope to get the house vacuumed and the laundry finished.

My sleep specialist called this morning with the results of my study.  My apnea has worsen slightly since I was first tested five years ago.  I've got to take my cpap in tomorrow and have the settings changed.  He is sending the results to my cardiologist so we have one more piece of the cardiac puzzle.  I wish I didn't have to wait until the end of next month for the MRA. I would really love to have all of this finished up. It's like a dark cloud following me around because it leaves a huge question unanswered.  Have I had mini strokes in the past? Is there really a possibility that I could have a stroke or a heart attack and with no warning die immediately?  Do I have multiple sclerosis?  Am I missing out on treatment time that could make a difference in my life in the future?

It's always irritated me that doctors don't seem to have the sense of urgency that we do.  We're told that our condition could be serious and that they need the test to determine exactly what is wrong and the treatment.  It's serious but we can wait a month or more to have the testing done?  I'm also having a hard time wrapping my brain around the fact that even though my cardiologist is requesting the test, I have to see the neurologist first?  It would seem to me that professional courtesy (and common sense) would be to schedule the test, review the results and share them with the requesting specialist.  If it's indeed a cardiology problem, I save the time and money of a neurology appointment and the neurologist has an open appointment for someone that really needs to see him.  If it ends up it's a neurology problem, then we've already got that information when I see the neurologist and treatment gets started sooner.  Makes complete sense to me.  What do you think?

Monday, June 13, 2011

My Rollercoaster Life with Fibromyalgia

I've lived most of my life in the south.  I'm proud to be a Mississippian.  I grew up with no air conditioner and never missed it.  Before fibro, I camped, fished, hiked, all kinds of outdoor things in the summer heat.  Before fibro, the heat never bothered me. Today, it took every ounce of energy I had and I never left the house. The air is running full blast but I'm still hot.  Pre-fibro i would have been comfortable if not cool.  Not anymore.  Thankfully when I am asleep, I've got two fans blowing on me and I sleep well.  It's when I get up and try to do housework that it's bad. Today I ended up with a wet wash cloth on my neck. There wasn't much accomplished except a couple loads of laundry that still aren't folded. Days like this make me feel pretty much worthless. I miss the person I use to be.  I miss the being able to keep my house clean so that it's something to be proud of. Instead, I feel like it should be on one of those shows about messy houses.
My fibro pain has stayed down at a Level 3: Your minor pain is strong enough to get your attention. You resort to Over-the-Counter (OTC) medications for several days. I feel blessed for that but my Chronic Fatigue Syndrome has taken it's place. Last night I slept about 11 hours.  I saw my wonderful hubby off to work and went back to bed and slept another 3 hours.  Did I want to get up when I did?  Nope. Could I have slept longer?  You betcha. But I had to get up.  I had to get up, clean up the house, do the laundry and fix a good supper. Otherwise, I see myself as worthless. I'm feeling pretty worthless tonight.  I hope I can sleep but I'm not sure I will.  Between my emotional state and the burning in my legs, I don't know if it's possible.

I suppose the physical acceptance of my illness is easier because I can't argue with a body that refuses to move any more. For the most part, I feel like I've accepted that I am not and never will be the person I was.  I accept my limitations and move on the best I can.  Emotionally, I'm not so accepting.  Emotionally a part of me refuses to accept that I'm a very sick woman.  Most people I read about accept that fact with just a Fibromyalgia and/or Chronic Fatigue diagnosis.  Adding Chronic Myofasical Pain, Neuropathy and lymphedma would confirm it to anyone but me.  Doctors, friends and family tell me that I'm a sick woman and I need to accept it.  Why can't I?

Now that my edema diagnosis has been changed to lymphedma, I'm terrified. I have signs of cellulitis beginning on my lower legs.  The look on my doctor's face when she walked in the room last week terrified me.  Her talk of finding a vascular surgeon if the lymphedma therapy doesn't work has me terrified.  Reading that some insurance companies don't pay for lymphedma therapy has me terrified. Knowing that the pain of the Fibromyalgia and the Chronic Myofasical Pain in my legs may keep me from being successful with the lymphedma therapy has me terrified.  Knowing that once again I'll be running up even more medical bills that we can never begin to pay has me terrified.

On days like today, I feel like a failure and a burden.  I'm only 54 years old.  I shouldn't be a burden to my husband.  I shouldn't be causing him to daily live the "in sickness and health, for richer, for poorer" part of his wedding vows. That was for when we're 80 years old, not now.  Occasionally, I think that I should suck it up and go back to work. I know people who still work with their Fibromyalgia, so why can't I?  We desperately need the income. Then I remember working. 

I remember throwing up because the pain was so bad.  I remember falling asleep at traffic lights driving to and from work. Only by God's grace did I not fall asleep driving. I remember spending my lunch hour in the car sleeping to make it through the rest of the day. I remember being taught a new task and three days later not remembering how to do it or even having been taught to do it.  I remember the feeling of failure because I was no longer the "go to" person.  I remember the feeling of failure that I would never use the degree I had worked so hard for just a year before.

I truly don't know how I survived as long as I did at work when things started to get worse. They got worse quickly, before I really understood what was going on with my body.  My pain levels went up and didn't come down below a Level 7 (This level of pain is the kind that keeps you awake at night, makes it hard to think and act. Your prescription medication only dulls the pain for a short time. You limit your activities in order of importance. You really can't work well)  for almost six months.  Most days it was a Level 8: This is serious pain. You don't want to do anything or be bothered by anyone. You have taken so much pain medication you are unable to fully concentrate on anything. Work is out of the question.  Some days it was  a Level 9: Very serious pain here. You can not concentrate on anything but pain. You should not do business transactions or make any important decisions because of your limited mental state. You can not go to work and you shouldn't drive a car. At this point you begin withdrawing from the world around you.  My supervisor and co-workers were not sympathetic so I pushed myself to be the old me.  The me before the Fibro Flare from hell that lasted almost a year.  Bill was without a job because of the economic crisis at the time.  I had to work.  We had to have my income and my health insurance.  I pushed myself to go to work with Level 8 and 9 pain.  Until the day I could do it no longer. 

I can no longer ignore deny that my life is different.  I'm a sick woman.  I can no longer work.  Will today be the day I accept that?

The tears are coming...

Sunday, June 12, 2011

Sleep, Pain and Fibromyalgia

My sleep study seemed to go well.  The doctor will give me a call Monday or Tuesday to let me know if there were any changes from my first one.  My only complaint was that the nurse woke me up about 5:15 this morning. Had she disconnected the electrodes and let me sleep even another hour, it would have been so much better. I finally got awake enough to drive home and climbed into bed as soon as I got here.  I'm not sure that I slept at all.  Once sleep is interrupted, it's hard to go back to sleep. Sometimes impossible.  Many times, I have been awake for 24 - 36 hours because the pain is so severe that it is impossible to get comfortable enough to sleep.  When I finish writing this, I'm going to bed, hopeful that I will be able to sleep.  I'm definitely tired enough. I only had 6 or 7 hours of sleep.  I need almost twice that.

I feel very blessed that my pain has remained at a Level 3: Your minor pain is strong enough to get your attention. You resort to Over-the-Counter (OTC) medications. Had it not stayed low, I'm not sure how I would have been able to sit still long enough for the nurse to glue the electrodes onto my scalp (and my hair).  While she worked, we talked about Fibromyalgia, what can cause it, how it is diagnosed and how it is treated.  Her mom suffered a disabling injury at work several years ago and shows all the signs of having Fibromyalgia. Like most of us, she's having a hard time finding a doctor who will listen to her.  It's sad that that we have to fight so hard to get the treatment we need and deserve. It's sad that family, friends, employers and even doctors are not willing to believe that we are in the severe pain that we truly experience.  We are no longer able to do things that we once could do. Instead of the support we need as our pain changes quickly and severely, we are called lazy and drug seekers.  

I did nothing today but sit and relax, hoping to maintain my pain at Level 3.  We went to the Saturday night healing service at church tonight.  Our priest held my head and prayed for healing before he anointed me with oil.  Next he prayed for Bill to have the strength he needed to care for me. I thank God every night for my wonderful husband who sacrifices so much for me.  I am no longer the woman he married.  No longer the woman who loved to hike, hunt and fish with him. No longer the woman who loved to keep a clean, organized and inviting home for him. No longer the woman who loved to cook healthy, good tasting meals for him. I am now the woman who sits with her feet propped up to keep her pain down to a manageable level, in the midst of a cluttered home.


Friday, June 10, 2011

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.

What Hqppened to Wednesday and Thursday?

The last two days have been a blur. Monday I made the mistake of wondering if I could have 3 good days in a row.  Foolish me. I should have known better. Tuesday started off pretty well. I slept a little late and then worked on my grocery list and coupons. Late afternoon, I set out for the store to pick up a few things we needed and to try my hand at Extreme Couponing.  We really cannot afford the $104 a month to have the grass cut.  Unfortunately, it's the only way for the grass to be cut on a regular basis. I hoping to be able to cut our grocery bill enough to cover the cost using coupons.

Yard work was one of my favorite things to do before fibro. I'd still love to do it but I've gotten smarter about pushing myself to do things like that. Last summer I decided that I could sit on a stool and weed the flower bed across the front of the house.  That was a horrible idea.  I forget how long it actually took but it seemed like hours to pull the weeds and grass from a 3 foot by 2 foot section.  When I finally got smart and decided I needed to stop, I barely got in the house and had to sleep for a good while before I was able to take a shower.  The next four days were spent in bed in with a combination of horrendous pain (Level 9: Very serious pain here. You can not concentrate on anything but pain. You should not do business transactions or make any important decisions because of your limited mental state. You can not go to work and you shouldn't drive a car. At this point you begin withdrawing from the world around you.) and serious fatigue that was what I imagine going without sleep for a month would be like.  Since then, I've been good about not doing any yard work.  The only thing resembling yard work I've done has been cutting a weed that comes up between the house and the driveway in a little crack in the pavement when I just can't stand to see it there anymore.

So back to the couponing.  I'm hoping to cut our grocery expenses by $100 a month with coupons so that we can afford to keep the grass cut. It's one of the easier things I can do because I can sit in my chair with my feet propped up and look for on-line coupons. Then I check out some of the couponing websites for hints on how to "stack" coupons for the most savings possible.  After working on my list for a couple of days and matching up coupons to the ads, Tuesday was shopping day.  I needed to go Tuesday because it was the last day of the ads that I had matched my coupons to. Since I had had several good days in a row, I was optimistic I'd get it done quickly.  When I left home, my pain was at a manageable Level 3: Your minor pain is strong enough to get your attention. You resort to Over-the-Counter (OTC) medications.  

Unfortunately, it didn't stay that way. I went to Walmart and got some caffeine free diet cola that's hard to find anywhere else. The pain had already started to working it's way up. My next stop went as planned and I walked out having saved 70% of my total bill.  The pain was not cooperating with my plans.  It was up to a Level 4: The pain is getting stronger, you are taking more OTC medications but they don't last long. You begin to cut back on your activities in favor of just sitting down. I should have come home then but there were several things on the list at my next (and final) stop that we really needed.  Thank goodness for motorized carts. I went around the store as quickly as I could and got most of the things on my list and headed for the check out. By this time, my pain was at a 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. I checked out, saving 40% on the total bill but really not caring.  All I wanted to do was go home.

I got in everything in the car and headed home. Several times on the short drive home, I thought I was going to have to call Bill to come pick me up.  I truly didn't think I was going to make it.,  Finally I pulled in the driveway and called Bill from my cell phone to come help me in the house. With his help, I made it to the bedroom, changed my clothes and immediately crawled into bed.  Bill brought me my medicine and a glass of water and I turned the light off and fell asleep almost immediately.  At this point, my pain was a Level 7: This level of pain is the kind that keeps you awake at night, makes it hard to think and act. Your prescription medication only dulls the pain for a short time. You limit your activities in order of importance. You really can't work well.

I spent all day Wednesday in bed recovering from a three hour shopping trip that had been meticulously planned so as to make it as quick as possible with as little walking as possible.  Thursday was an improvement but just barely. I woke up Thursday morning with pain that was more bearable and with a little less fatigue. It was at Level 6: You simply can not ignore your pain for even a few minutes. Prescription pain medications provide you with limited functioning abilities.  As the day progressed, the pain came on down to a 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. 

Three hours of shopping cost me two days in bed.  I'm not quiet sure how I'm going to change my grocery shopping.strategies but this isn't going to work. I guess this is going to be one more thing that I have to have Bill do with me.  If things continue to go like they are now, will I even be able to leave the house alone sooner rather than later?

When I got out of bed today, I noticed that my swollen legs were still looking sunburned from halfway between my knee and foot down to my toes.  I called the doctor and they had me go in to get it checked.  My edema has crossed the line and is now lymphedema. Thank goodness Bill was off today to take me to my appointment.  We stopped at the medical supply store to get my compression hose that I have to wear from now on.  Tomorrow I have to call around and find a physical therapist who is trained in lymphedema therapy to see if the excess fluid I have can be forced to come back up my legs.  If that doesn't work, I have a strong risk of developing cellulitis. The possibility of looking at surgery to try to stop the swelling is out there too.

July 27 I go before a Social Security Administrative Judge who will decide if I am able to return to work in some capacity.  I can not imagine what there is in the job market that I can do. I can't even grocery shop without spending days in bed. How could I get up, dress and go to  work somewhere? My prayer is that this person will listen to what I have to say about how my life has change and give a fair ruling.

Wednesday, June 8, 2011

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
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Monday, June 6, 2011

Where Did the Weekend Go?

I can't believe that it's already 11 o'clock Sunday night. Why is it that when I feel OK, time flies but when the pain is high, time seems to move so slowly.? My son and daughter came up for a visit Saturday and I realized that it was the first time I could remember when I felt like visiting instead of taking pain meds and sleeping.  When they come to visit, no matter how bad I feel, I still try to put on the "Mom" face. They drive too long and I see them so infrequently to let my fibro, chronic fatigue and chronic myofascial pain interrupt our visit.  Friday night and Saturday my pain was only a Level 3: Your minor pain is strong enough to get your attention. You resort to Over-the-Counter (OTC) medications or Level 4: The pain is getting stronger, you are taking more OTC medications but they don't last long. You begin to cut back on your activities in favor of just sitting down. When I mentioned it to them and my husband, everyone agreed that it had been way too long since I was in decent shape when they were here to visit. I find it so sad that feeling OK is something noticeable and being in pain is so normal that I no longer even notice it.

Fibro has changed so many things in my life including visits from my children. Before fibro when they came up to Memphis we would go to the park or the zoo. Now Monica and Dave come up while Brian says home with the kids. She leaves them home so that she can do my deep cleaning and help me go through things that I've had in storage for going on 10 years. We've got the house decluttered for the most part and the clutter is pretty much confined to the garage.  Since we gave up our storage unit years ago, we've not been able to get the car in garage.  I'm hopeful that we'll be able to get the car in the garage soon.  That would make things so much easier for me.

I've never had a garage except for the first couple of years that we were here so I didn't realize how important having one could be.  Having the car in the garage during the summer means that the car would be in the shade with the windows down.  Not getting into a boiling hot car would be so nice. Heat takes so much out of me. It makes it so hard to do anything.  Spring and summer use to be my favorite seasons because I love to fish, hike, camp and ride the Harley behind Bill. Since my fibro has gotten as bad as it is now, the summer heat is not my friend.  That means that most of my outdoor activities have pretty much gone away Since the heat has had such a negative on me, having a cooler car that the a/c can cool down quickly will be wonderful.

Cold weather has its down side too. The colder it gets the harder it is to get around.  My joints are so full of arthritis that they they don't want to work.  The cold weather makes my already painful muscles hurt even worse.  Going outside to scrape the iced windows makes me so miserable that it's hard to actually go where I need to go by the time I get ready to leave.  Being able to have the car be warmer and not have to scape ice off the windows will be wonderful also.

I'm headed to bed now.  It's been a good weekend and my pain has stayed down.  I don't want to stay up too late and not get enough rest.  That will send my pain back up. I've had two good days.  It's been along time since I've had three.  Maybe, just maybe, I'll wake up with my pain still around a Level 3 or 4.

Thursday, June 2, 2011

This Heat Has Got to Go and I Need My Mind Back

I had forgotten how much the heat bothered me last year.  Today the high was in the upper 90s and our a/c isn't working well. During the middle of the afternoon, it was 87 degrees in the house and the outdoor temp was 92.  All I could could do was lay in the bed with the ceiling fan and a floor stand fan blowing on the bed.. As I cooled down, I dozed off and slept really well. When I woke up my pain was still around a Level 4: The pain is getting stronger, you are taking more OTC medications but they don't last long. You begin to cut back on your activities in favor of just sitting down.

I am feeling so much better that I'm afraid I will over do it trying to get caught up with the things that were left undone last week when I could hardly move.  That's one of the hardest things about this collection of diseases that I have.  A good many of us with fibro are overachievers who are accustomed to having a spotless home with a place for everything and everything in its place.  I was one of those people. I had a housecleaning plan where I scrubbed the bathrooms three days a week and cleaned my baseboards every three months. That's no longer possible and it is really hard to accept.  I'm use to being the woman who could do it all.  There's no way I come even close. 

I have a long list of things I need to get done in the next few days. Ten years ago, I would have been able to get it all done in one day and throw in a couple of loads of laundry that I would fold and put away. (Currently there are two loads of laundry on the couch that we've been going and pulling what we need from.  I hate that.  Remember "a place for everything and everything in it's place?")  

On my to do list is sorting through a huge stack of medical bills, figuring out which ones are duplicates and making a good list of what we actually owe.  I'm sure in the stack I'll find other bills that I may or may not have paid. My cognitive problems have gotten so bad that it's not unusual for me to not discover that a bill is over due until the collectors start calling. Because of the problems this has caused in  embarrassment, late fees and bank charges, my precious husband is taking the job of paying the bills and balancing the checkbook.  Before I hand it all over, I feel responsible to sort it all out so that he can figure out what questions he has for me.  It will also make it easier for him to figure out where to start to get it under control.

I was looking for some information to help me not feel so frighten about the memory problems I'm having.  I did a Google search and came across information on the Mayo Clinic.  I'm not sure how I feel about it because it paints a pretty negative picture of what I have to look forward to l.  Here's what I found:

According to the Mayo Clinic website, your brain changes as you grow older just like the rest of your body. Many people notice gradually increasing forgetfulness as they age. It may take longer to think of a word or to recall a person's name.  But consistent or increasing concern about your mental performance may suggest MCI. Cognitive issues may go beyond what's expected and indicate possible MCI if you experience any or all of the following:

  • You forget things more often.
  • You forget important events such as appointments or social engagements.
  • You lose your train of thought or the thread of conversations, books or movies.
  • You feel increasingly overwhelmed by making decisions, planning steps to accomplish a task or interpreting instructions.
  • You start to have trouble finding your way around familiar environments.
  • You become more impulsive or show increasingly poor judgment.
  • Your family and friends notice any of these changes.

The article went on to say that if you have MCI, you may also experience depression, irritability and aggression, anxiety and apathy.  I don't have any aggression problems but I definitely have all the others.  I hate to admit it but I am so overwhelmed when it comes to too little money and and too many bills.  I am so discouraged that I can't come up with any ideas on how to manage our money or keep the house clean.   I have often said that Fibromyaglia has changed my life as I knew it.  When I've said that I was talking about it had changed my life physically.  I had no idea how much it was changing my life from an economic and organizational standpoint.  Stress and worry causes Fibromyalgia to worsen and I can see that happening a good deal.  I'm not sure what we are going to do.  My prayer is that Bill will figure out how to get this mess unraveled and everything will ok.  

It's taken me almost three hours to write this so I'm going to bed.  If I didn't have time to write about my other tasks for tomorrow the odds are I'm not going to get around to doing it.tomorrow.. Tomorrow night I'll have to update you on what I got a accomplished and what I need to do do Friday.j