My Social Security Hearing Was an Eye Opener

Here's short update on what happened at my hearing. I'm going to write a blog post about the hearing and what went on soon. 

Reading the statements friends and family wrote to give the judge pretty much slapped me into reality quickly.  I cried a lot last week when they started arriving.  Everyone said the same thing just in different words. I had to pick up my records from my GP and reading the notes my specialist had sent her brought on more tears. My attorney quoted my doctors in her brief to the judge and when she read what they said to Bill and I more tears came. (I had never seen those medical records.)  Needless to say,  It was a highly emotional week for me. Either I truly did not realize how sick I actually am or I was in so much denial that I was completely blind-sighted by the facts. 

Apparently someone in the local Social Security Disability office should have scheduled me for both physical and mental health clinical evaluations. Since they weren't done before the hearing, it may be another 4 or 5 months till I know anything. The judge said several times that my file is not complete and needed to be completed. My attorney said that she felt like if he was going to deny me, he would have done that without the CEs being in there. So either he's teetering on which way to go and needs the additional information to decide or he's going to approve me once he has all the documentation he needs in the file. 

I can't help but wonder how much longer this is going to take if Congress and the president don't get their act together. As Christians, we must ban together and PRAY. 2 Chronicles 7:14 says

"if my people, who are called by my name, will humble themselves and pray and seek my face and turn from their wicked ways, then will I hear from heaven and will forgive their sin and will heal their land".

I believe that! We have to pray for our leaders even if we don't agree with them, as well as our brothers and sisters in Christ and even our enemies. If our hearts aren't right, God isn't going to grant us the desires of our heart. 

July 27, 2011 - It's finally D Day

It’s officially the day of my Social Security Disability hearing.  Preparation for it has been an emotional rollercoaster of feelings that I never dreamed I would experience. I have gone from being perfectly calm to a total basket case several times over.  My plan had been to get my preparation finished up mid afternoon and then have a relaxing evening followed by a good night’s sleep. Since I’m writing this at 3:36 AM I guess it’s obvious that those plans did not come to fruition.  

It all happened innocently enough. This morning I made a call to our GP to make an appointment for the mother-in-law’s checkup so she could get a round of new prescriptions and refills for the next 12 months.  Armed with Mr. Supportive’s work schedule I was ready to make an appointment for one of his days off next week.  Alas, even the best plans can get sidetracked.  The MIL had 14 days of meds left.  Not a problem right?  Plenty of time to make an appointment.  Wrong!  It seems that our wonderful (and fibro friendly) GP had the nerve to schedule a vacation with her family for the next two weeks.  The nerve of her!!  The next available appointment was 16 days out. 14 days of meds – 16 days till an appointment…. Houston, we have a problem.  Wednesday – as in today, the day of my hearing Wednesday - was the only opening except for 2:00 yesterday (Tuesday). Since Mr. Supportive is using his day off to go with me, if she was going to get her refills then it was up to me. So I did as much as I could toward finishing up my prep work and then took off to pick her up. We had an uneventful trip successfully getting her new prescriptions. I even had a quick discussion of my recent neurologist visit and the signs of wonderful little TIAs that showed up on the MRI.  

Yes, I am exhausted.  Yes, my pain level was up to 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.)  It’s still a Level 6.  (You simply cannot ignore your pain for even a few minutes. Prescription pain medications provide you with limited functioning abilities.) Ideally, I would have gone in, taken a breakthrough pain pill, kicked back in the recliner and slept several hours. As much as I desperately needed to, I couldn’t so I dropped her off, stopped by the Kroger Pharmacy (whoever thought to put drive up windows at pharmacies is a genius!), picked up my medicines and headed home.  With a slight detour to feed the dog so he didn’t wake me up demanding to eat, I hit the bed for a much needed nap.  Before anyone asks, yes, we all know that this is not something that I am really able to do anymore. I did it because MIL needed to see the doctor before she could get her new prescriptions.  She had a limited amount of medicine that was not going to last through the doctor’s vacation.  There was no one else available to do it on short notice and it had to be done.  MIL would have done it for me if the tables were turned (and she was not legally blind).  I have come to the realization that my days of doing it even in a time sensitive situation like we had today are extremely limited and I will talk about that in my next post

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I have a really hard time judging how long it will take me to do things like this these days.  Pre-fibro I would have had the information printed, collated and bound in a presentation folder in 45 minutes. (Ok, I may be exaggerating a little but you get the point.)  Instead, I’ve been working at this for seven hours.  It’s finally all printed, collated and binder clipped ready to hand off to my attorney in 5 hours!  Since I was so stressed about the hearing last night I slept a total of 45 minutes - maybe. I’m headed to bed for a couple of hours of sleep – I hope.

I think I’m as stressed about Mr. Supportive having to drop me off in front of the building and go park the car as I am the hearing.  The same woman who 3 years ago flew to St. Louis where she had been once 5 years before in a car and navigated the metro rail from the airport to a strange neighborhood stop to meet up with friends is now afraid of standing in front of a building in downtown Memphis at rush hour.  My how fibromyalgia changes our lives.

Survey Shows that Fibro Impacts Life Decisions and Everyday Activities - Did I have a plan when I started this post???

Follow up note: July 27, 2011 3:16am  I've just spent several hours going through and doing a copy and paste into Word on the blog to take with me to my SSD hearing at 10:30 this morning.  I found this draft and don't remember starting it but that's really nothing new.  :-)  There were several posts where I promised to follow up and haven't so I've made a list so that can do the updates.  I added this to the list because a cursory glance at the website did show some links to some potential helpful sites.  Stay tuned folks.  I may just figure out where I was going with this post.  LOL 

Ok I have no idea how I highlighted my note and I can't get it off.  Since I would like to go to bed for at least a little while.  I'm going to move on and come back to it.  If you have any suggestions for how I can fix this other than deleting it please help me turn this into a learning experience.

 

I had planned to post everyday while I was visiting with my grandchildren about how we find activities that Mimi is able to do with them.  As you can tell, that hasn't happened.  I'm not sure how I did it but I'm "pulled" my right thumb.  I can't hold a pen to write and I've not been able to sew because of the pain.  Typing is also painful so before I go to the doctor, I'm trying not using it any more than I have too. The no use theory seems to have helped but I guess the test will be when I get through with this post.

I can't remember where I saw this posted but it was probably on Facebook.  What I do remember is how angry it made me that the NFA and APF had to do a survey to find out what those of us with this hideous disease have known for as long as we've had this mess. Hopefully there wasn't much money spent on the survey. 


Pain Medicine News, The Independent Monthly Newspaper for Pain Management published

Fibromyalgia Survey Shows Impact on Pivotal Life Decisions, Everyday Activities in their July 2011 issue.  The survey found that those of us with fibromyalgia, diagnosed or undiagnosed experience debilitating as a result of our chronic pain condition.  Well, no kidding. The survey looked at the impact that living with a chronic pain condition, such as fibromyalgia, can have on everyday tasks, parenting, relationships and life decisions.

The online survey was completed by 3,018 individuals living with diagnosed or undiagnosed fibromyalgia (n=2,559) or other chronic pain conditions (n=455). The average age of respondents was 51; approximately 91% were female.

Notable survey results include the following:

• Almost nine in 10 respondents (approximately 87%) felt they are no longer the person they were before they started living with chronic pain.
• Nearly all respondents (92%) reported their condition has had a significant impact on major life decisions, including whether to initiate or remain in a relationship, change jobs and/or have children.
• Of the more than 650 respondents who had children currently under the age of 18, 95% reported their pain condition affected at least one of their parenting duties, such as taking care of daily household and child-care needs, enjoying their children’s milestones or managing their children’s activities/scheduling.
• Approximately seven in 10 survey respondents (68%) agreed that pain limited their ability to care for their family.
• Approximately 98% of respondents reported they have implemented some type of adaptation to their daily routine in order to conduct activities and tasks; 75% had made three or more daily adjustments.

“It took two long, painful years and countless doctor visits before I was diagnosed with fibromyalgia, but our survey respondents had an even lengthier process—their average time to receive a diagnosis was three years,” said Lynne Matallana, MS, president and founder, NFA. “My diagnosis has allowed me to work toward managing my pain more effectively, so I know firsthand how important it is to receive one. It is our hope that enhanced awareness and education will help shorten this journey for others.”

The survey is part of an educational initiative, “The Faces of Fibromyalgia,” that launched today through the NFA and APF. The survey was developed through collaboration among the NFA, APF and Pfizer Inc

I'm Alive and Kinda Well

I'm just stopping by to say hello. I'm working on a post regarding how Fibro completely changes our lives. I'm also working on one about how we can have fun with our grandchildren even with Fibro pain. Unfortunately, I've got something wrong with my right hand/wrist/arm. Using it definitely makes it much worse. Don't know if it's a Fibro problem or an Ortho one. Being out of town makes it more of a challenge because It's been so long since I lived here, I no longer have a doc who will not make snide comments about my pain medication. Plus anywhere I go will be out of network any where I go. I have a brace for my carpel tunnel that helped it but it's been misplaced and I refuse to pay $20 for another one. For now it seems that my only solution is to not use it.

Tomorrow the grandchildren and I are going to make a cake. I'll supervise the ingredients being added and mixed together. It's something we can do together with limited movement for me so my pain should stay down. I'll let u know how it goes.

Cynthia the Fibromyalgia Grandma

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.

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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.

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.

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

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


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


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

St. Andrew's Episcopal Church, Collierville, TN

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


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

St. Andrew's Episcopal Church, Collierville, TN

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

The Order of the Daughters of the King Cross

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

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


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


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

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

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

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

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

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

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

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


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

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

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

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.