The Countdown is On! A Change is Coming!

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

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

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

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

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

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


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


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

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.

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.

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...

Finally! A Pain Scale that Makes Sense for Chronic Pain Sufferers

Since my Fibromyaliga has worsened my idea of a “10” on the pain scale has changed dramatically.  What I defined as a “ten” five years ago is so far from a “ten” today.  I was a pain “baby”. A paper cut would drive me to the point of tears.  As my disease has progressed (and yes, it does progress) my pain levels have become so high that it’s hard to arbitrarily assign it a number.  When I visit my pain management specialist, she has a form that we use to show her where our pain is.  It has a line drawing of a body (front and back) and we are to mark where our pain is and how we rate the intensity of our pain.  Most of the time, mine looks like I’m been “coloring” the body with my pencil because there is not one part of my body that does not hurt.  There are some areas that are worse than others but for the most part my entire body is racked with pain 24 hours a day, 7 days a week, 365 days a year.  The hardest part of answering any questions about my pain level is assigning my pain a numerical rating.

We’ve all heard the “rate your pain on a scale of one to ten with ten being the worse pain you’ve ever experienced.”  I often wanted to ask “today”, “this week”, “this month”, “this year”?  Some days it could be “what hour”?  According to About. Com the Numerical Scale is designed to be used by those over the age of 9. The numerical scale gives the user the option to verbally rate their scale from 0 to 10 or to place a mark on a line indicating their level of pain. 0 indicates the absence of pain, while 10 represents the most intense pain possible. In theory, this Numerical Rating Pain Scale allows the healthcare provider to rate pain as mild, moderate or severe, which can indicate a potential disability level.  Pain scales are subjective.  Remember when I said I was a pain “baby”?  Five years ago I would have said that an ankle sprain was a 10.  Comparing that ankle sprain pain to my daily Fibromyalgia pain, Myofascial pain, Chronic Fatigue pain, Neuropathy pain and the pain from my edema when it’s exacerbated knocks it down to a “1”.  I have to wonder how  “Severe” can cover four numbers? Are there stages of “Severe” that I’ve not heard about?

The Wong Baker Faces Pain Scale combines pictures and numbers to allow pain to be rated by children over the age of 3 and adults. The faces range from a smiling face to a sad, crying face. A numerical rating is assigned to each face, of which there are 6 total. I laughed out loud when I read the notes below the faces.  I literally can’t remember the last time my pain was a “2” and forget about a “0”. Like the numerical scale, it’s so subjective.  I can’t remember having anything but an “8” or a “10” going by this scale. Believe it or not, I can be at an “8 – Hurts a Whole Lot” and my pain can do their definition of a “4 – Hurts Little More.”  It’s not unusual at all for me to be “Hurting a whole lot”, then  “Hurt a little more” so that I hurt worse..

Chronic pain suffers need a reliable pain scale to convey to their pain levels to medical providers.  When my brain fog isn’t too bad, I like to do research on my illnesses. Recently I came across the fibromyalgia pain scale below at. FM/CFS/ME Resources. This Fibromyalgia Pain Scale gives a “definition” for each number, eliminating the guesswork that is involved when attempting to use the Numerical Rating Pain Scale or the Wong Baker Faces Pain Scale.  I’ll be using the FM/CFS/ME scale in my posts.

Here's the FM/CFS/ME pain scale:

Level 1: You experience very minor pain in parts of your body. You don't have to take any pain medications and you can do your work with no problems. 

Level 2: The minor pain has increased to dull aches in some parts of your body. You don't have to take medication and you still can work as usual. 

Level 3: Your minor pain is strong enough to get your attention. You resort to Over-the-Counter (OTC) medications. 

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. 

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. 

Level 6: You simply can not ignore your pain for even a few minutes. Prescription pain medications provide you with limited functioning abilities. 

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. 

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. 

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. 

Level 10: Pain has made you totally unable to function. You don't want to deal with or talk to anyone. Even with narcotic pain medications you are still in horrible pain. You go to bed or go to the emergency room for any help you can get. 

I like this pain scale because I can say that my pain is “only a 3!”  Those are the days that I wake up and go “Wow!  I feel pretty good” in the way that people without chronic pain would go "I feel awful".  It’s on those days that I try to do my errands and get as much housework done as I can without overdoing it. There’s a problem with having a Level 3 day.  They are so few and far between that I tend to do as much as I possibly can because I don’t know when I’ll be a Level 3 again.  Because of overdoing, a day that starts out a Level 3 can become a Level 6 by the end of the day.

My normal everyday pain level varies from Level 4 to a Level 8. I realize that is a wide range but Fibromyalgia, Chronic Fatigue and Myofascial Pain can cause a wide range of pain. It’s unpredictable and uncontrollable.  It can literally change in a 15 minute period. I’m sure as you read my posts over time there will be a day where you’ll see that change.  It can change because I over do it or for no reason that I can figure out. It’s life with chronic pain.  Throw the peripheral neuropathy in and well… this post is long enough but I’m sure we’ll talk about it soon. That’s just the way my life is. 

Cynthia

Good days, Bad days and Learning to Adapt: September 10 - 17, 2010

This past week has been one of ups and downs much like the week before. Tuesday we went to visit Bill's mother but my legs were hurting so bad that I sat in the car and napped while they shopped at Walmart.  I knew I would never be able to make it through the store.  Friday I had to go to the store if we were going to eat and I was exhausted from the walking when I finished.  Had I remembered to get one, I would have used one of the motorized carts but I didn't remember until I was halfway through with my shopping and wondering if I was going to make it to the check out.

Mornings are beginning to be harder again as the temperatures are beginning to drop into the 40s at night.  When that happens, I can barely move until it warms up around noon. Late evenings are beginning to be hard as well because as the temps go down, it gets more and more difficult to walk.  To say that I walk like an old lady would be an insult to old ladies!  Most of them walk better than I do. 

I've tried to accomplish as much as I possibly can during these good weeks.  I hope to have a few more because I'd like to accomplish a little bit more before winter weather shuts me down for a while.  I'm setting up a dedicated sewing room so that I can feel like I have somewhere to be productive.  It really helps with the depression to feel like I can contribute something to the household even if it's just sewing my own clothing and gifts.

With fibromyalgia, neuropathy and arthritis, it's all about finding a new way to do things that is less painful.  I say less painful because there is no such thing in my life as pain free anymore.  Hand sewing is difficult because of  the arthritis in my hands.  Thank goodness for my sewing machine.  Using scissors is difficult these days as well but I've learned to use a 60mm rotary cuter to cut most things. I have a smaller one that I can use when my hands are not quiet as bad.  Last year for Christmas, Bill bought me a new sewing machine that can be operated without a foot pedal.  I prefer to use the foot pedal but on days like I've had this week, it's nice to have that option.  I spent most of the last week feeling as though my legs were on fire under my skin.  My feet were numb and had the pins and needles thing gong as well as "falling asleep" so that I couldn't feel the foot pedal.  Being able to sew with the push of a button was good.  Anything I can do like that helps with the depression.  I WANT to be a productive member of society.  Unfortunately, MY BODY WILL NOT cooperate.

As I type this, my right hand is swollen and hurts.  Especially the middle finger. That poor finger hurts so bad and is swollen much more than the others.  The knuckle closest to my hand (is that one the first knuckle?) is so large that I can't straighten it out. Holding a pen or pencil is out of the question. Typing is painful but not as much because I've learned how to hold my hands to cut the pain some. 

Memory becomes a bigger problem every day.  I've pulled out my Daytimer from my working days to make lists in one place in something that's easy to find .  I've also started putting  notes from important phone calls there as well because I forget what arrangements, etc.  I've made about our bills and that kind of thing.  I've got notes in my phone too.  The notes in my phone have kept me from buying patterns or supplies that I already have more than once.  There's a reason that pattern was cute - I've already bought it.  Yes, I did need a 3" block template - last month when I bought it.

It's time to rest my hands because my pain is up to a 7 or 8 from writing this.  Thank you for sharing my life.

September 30, 2010 - Pain Level 9

Where did September go?  This week has been full of me realizing it was the end of September. The house note had to be paid by the 29th and even though I had reminders written down in several places, I almost forgot to pay it.  The only way I remembered was that I looked on line at the bank account and saw where my LTD check had been deposited and I knew that it had to go to pay the house note.  Yes, house notes are usually due by the 15th.  However, when fibro fog and cognitive problems are running rampant, you tend to forget things.  Well several months ago, I completely forgot to pay the house note. Yep, didn't even think about it until the mortgage company called and asked if we'd like to continue living here.  Fortunately, they were really good about working out a way for us to get caught up over several months and allowed us to make the payment each month when my check came in. 

My next realization that it was the end of  September came when I realized the light bill was due October 1 and that was Friday!  My pain level is so high today because it's been a very long, humiliating and humbling day with me either sitting for hours stiffening up or standing and causing my legs to start swelling.  Because I can't work and my LTD is only 50% of what I made and medicine had to be purchased to the tune of almost $500 this month, we can't pay the light bill.  There's just no way to make less than $50 pay a $550 light bill.  So this morning I was at a local agency by 7:30 to get in line for my chance at part of the funds they have to help the many people that need it these days.  Mornings are my worse time of the day. I can barely walk normally.  Picture the shuffling feet of a 90 year old woman.  That's me in the morning.  I got there almost on time and then proceeded to sit for over 2 hours.  We were packed into the waiting area so tight, there was no getting up to move around.  This resulted in the little old lady shuffle being even worse when I was called back because I was still stiff.

As the social worker was interviewing me, I could tell by the look on her face that I was not making sense. I stopped talking, gathered my thoughts and explained my problems to her.  She understood and we started over with her talking slower and me stopping to think about how I was going to answer before I opened my mouth.  That was much more successful. 

So here I sit stiff and hurting and hoping that tomorrow is a better day in more ways than one.