Christmas Old and New

Havent posted for a few weeks, its been a bad month for pain.  Partly due to weather change, partly due to the holidays and that this is my first christmas without my Dad.  My family seems to be falling apart.  Tonite, it will just be my mom and son.  I remember when all the family was together on Christmas eve (that is when my family always opens their presents and gets together) but now it seems lonely.  My granddaughter is with her mom this Christmas, she is 3 1/2yrs old and a bundle of joy.  Christmas isnt christmas without young ones.  She was here over the weekend.  I got a migraine with nausea Sat afternoon and had to go to bed and she said she would take care of me, she is the sweetest little girl. She pulled my blanket up over me and I told her I just wanted to cry and she said, Im here grandma, dont cry.  What a precious girl!  I dont know what I would do without her in my life! She brings such joy and happiness to my life of chronic pain and depression.

AMBIEN SLEEPWALKING

I have been taking Ambien for 4 yrs and never had an episode of not remembering something I had done, until last week.
I dont know when it happened during the night, but I took out my recycle trash bin and mailed 2 letters under ambien induced sleepwalking.  The next morning when I went to throw away a plastic bottle, I noticed my recycle box gone, then I noticed the two letters on the table by my front door were gone!  At first I was very shaky and upset, as the day progressed I calmed down.  I contacted my two lawyers that I had sent the envelopes to, and asked them to let me know if they got the envelopes.  Well today I got emails from both, saying that the envelopes arrived.
Its a scary thing when you cant remember how things happen when you know you didnt do it, Im still taking the Ambien as I have a sleep disorder and dont get into REM sleep stage which is your restorative sleep.  I just hope this doesnt happen again!

How low can you go

This weekend I have felt the worst, the lowest in my life.  The pain is taking over, it is stronger than my will.  Lack of sleep Friday nite was the begining of this.  Apparently I thought I took my Ambien but I didnt.  I found it Sat am on the floor.  So that is why I tossed, turned, got up and down several times and basically got no sleep.  Yesterday was really bad, then last nite when I went up to bed, my heating pad quit working, ARG! Today I got up a noon.  And the day hasnt been much better.  Time for another pain pill.

Holidays

I dont mean to be a scrooge, but the holidays are not a good time when you have chronic pain and a very small family.  We are having HyVee holiday dinner as I cant cook a dinner with my fatigue and pain.  I am getting better at saying NO, I cant help which is good, but the guilt still remains in my mind.  I feel guilty for not being "normal".  I know some of my family and friends dont understand how bad I feel, or that I am just not trying hard enough to feel better, but unless you have been in my body and felt what I feel, you have no idea of what I am goin thru.  My son told me yesterday, "just work thru the pain",  God, easier said than done.  That hurts me that he hasnt realized and accepted what my condition is, he is my only child.
My granddaughter visited over the weekend.  My son lives with me so she comes here when he has her.  I am so exhausted and hurting, I just want to cry.  I want to enjoy my precious granddaughter but it just isnt an easy thing to do.  I want to do things with her, take her places, but I will pay dearly for the pain/fatigue I will endure after she leaves.  It makes me sad.

Insurance companies

Insurance companies for LTD (Long Term Disability) are a joke!  Really, I would never want to work for one of these companies.  They deny, deny, deny!  But this week, I did get a partial victory! I have fibromyalgia (chronic pain syndrome) as well as daily headaches and migraines, IBS, depression, anxiety, etc.  There is no lab test to prove you have this chronic pain syndrome.  But there is no test for depression either. 
I got a partial approval for my LTD claim based on....depression, not pain.  Granted I am glad it got approved but the lengthy letter (they dont use spell check, imagine that) that came with it explaining why is utterly laughable.  It stated that I got depression first, which is causing my pain.  Excuse me, I was diagnosed with Fibro in 1997, the depression wasnt diagnosed until 2009. 
Ins. companies manipulate the drs. records and data that is submitted.  They dont believe your drs., but they do believe their so called medical experts they use to review your claim.  Ok, how does a dr. I have never seen in my life know more about how bad I feel than 3 drs. that have seen me for almost 20 yrs and have medical records documented.  Explain that!  They basically are stating that my drs are "liars" and "incompetent" to make a diagnosis.  Whatever!
Insurance reform is needed, hopefully Obamacare will address some of these issues. These companies have to be raking in the money, they only payout about 2-3% of claims received.  But I imagine they dont pay their employees well, so it all goes to the top managment who dont pay the taxes they should!

Getting out!

Today I was suppose to get out and try to volunteer for a couple hours to get some social interaction and just get out.  I didnt have the energy to a: take a shower, and b: get dressed, so needless to say it didnt happen.  I can never make plans b/c I never know how I will feel each day when I get up.
Im disappointed, Im lonely, Im depressed,  Im mad.  Mad that I have fibromyalgia, mad that it is forever controlling my life.
Will it ever end?  Tomorrow I have appt with my disability lawyer to pick up a check :) and I have to make it, I may end up going in my fleece jammies and dirty hair! I will spray enough perfume on to make me smell like I had a shower. Im hoping tomorrow will be a better day for me.  I havent left the house for 2 days now.
I mopped the kitchen floor yesterday and laundered the rugs and that is what left me in the condition I am today.  Thats all I did, pathetic. And I didnt do that good of a job either, my floor isnt shining. Oh well I tried.
Tomorrow is another day.

STRESS FROM FAMILY

Stress is what makes my fibro pain much more worse.  Today, my son who is 29 and living with me is the cause of extreme stress and pain for me.  He has lived with me for over 2 years and hasnt paid a dime he owes me over $1500 from bills/living expense I covered for him while he was out of work, his choice.  He left a good job of 4 yrs with the DHS before having a replacement job because he was "unhappy", waw, waw!  I told him jobs were hard to come by but did he listen, HELL NO.  Also the reason he had to move back in 2 yrs ago, he found out he had a daughter from a 2 yr relationship with a past girlfriend.  He couldn't afford to live on his own and pay child support, so I took out a personal loan in my name, $125 a month payment he swore he would pay me.  Big Mistake on my part. Well needless to say, I havent been getting the monthly payments for months. He owes $2200 left on this loan. Yet he is working again and says he can't have a "life" paying child support on what he makes if he has to pay me, HUH?  He complains about no food in the house, about the hot water, about the temp, and I could go on and on. He offers no help to me, picking up my meds, groceries, etc. I have very little income coming in $625 a month and am living on savings while I wait for my Social Security disability to be approved. The money will probably run out before I get my determination and 2 yrs of backpay.
Tonite he said, I cant believe you will never have to work again, WHAT!   Do I like being disabled with fibromyalgia pain, daily headaches, depression, anxiety, IBS and terrible fatigue. NO, I wish I could work.  I am sick to death of arguing with him, it just makes my pain worse. 
I could never treat my Mom with this lack of respect ever.  He hasnt even seen his grandma for over 4 mths, she moved 5 minutes away from us to a retirement apt and he cant make the time to see her. I pick up his daughter every other Friday nite since he is at work and I take care of her on the weekend while he has to work from 2-10pm, then I return her Sunday nite to her Mom.
This is only the tip of the iceberg.  I really want to kick him out, but as a Mom it is very hard to do this to your only child.  Plus I dont want my granddaughter to be in an environment that may be not good, depending where he would end up. He would have to find a friend to take him in, or if his Dad would let him move in that would be his other choice, but I dont see that happening.
I am just about done with this crap. I am out almost $3700 total.  I need that money to live on.
What to do?   How do you kick out your only child that you love but just cant keep arguing with him to show him that what he is doing is disrespectul and hurtful and self-centered.? Its a losing battle with him.  Please God, give me strength to overcome this and do the right thing!

My head is pounding!

I have daily headaches and it does control how I think, what I mentally and physically can do and my daily mood.  I have tried every medication known by my neuroligist as well as botox injections, physical therapy and massage.  It is something chronic I just have to live with.  I cant work anymore with these chronic headaches and it just sucks.  I cant plan to do anything because I dont know how bad my head will be hurting that day.
Sometimes its a tension headache, sometimes a migraine and lately I have been having nausea type migraines. (less pain but terrible nausea).  These headaches are one part of Fibromyalgia pain symptons that I suffer from.
 For those of you who say, take 2 aspirin and you will be fine, I say Bull Crap!  I have pain meds (prescription) that dont even work.  People that dont have headaches very often or hardly ever cannot fathom how bad I feel and why would I have to miss work, appts. events, etc.  That is so frustrating for me, people not understanding.  I would love to be one of those people who dont have headaches very frequently and actually have a life free if headaches.
So if someone you know says they have a bad headache, give them a break, be supportive no matter how hard it is for you to understand why they cant go anywhere or do anything.  Dont be judgemental!

GUILTY FEELINGS FROM CHRONIC ILLNESS

Then there is the GUILT

(This exert was taken from http://transformyourchroniclife.com Titled “Guilt and Chronic Illness) The illness, guilt is a factor, and it can sabotage our efforts to improve our situation if we let it. In addition, unhealthy guilt can actually make our illness worse by increasing our stress levels and making us feel that we “don’t deserve” to do the things that help us feel better. If I feel guilty about feeling exhausted and not being able to do the dishes, so I force myself to do them anyway, it makes my symptoms worse and I am even less able to do the things I think I “should” be doing.
Notice those words, “unhealthy guilt.” Guilt actually comes in two versions, healthy and unhealthy. The healthy version is the kind of guilt you feel when you do something “wrong” like hurting someone else. This is the kind of guilt that causes you to correct your behavior and make amends, and is a learning experience that can make you a better person. Unhealthy guilt, on the other hand, is the kind of guilt we feel about things that we have no control over, like our illness. This kind of guilt serves no purpose, makes us suffer for something that isn’t our fault, and frequently leads to self-hatred and feeling like a failure.

So the next time you think your friend or loved one that has been diagnosed with a chronic illness is being lazy… you might want to put yourself in their shoes and show a little compassion over something they have no control over because those kind of comments lead to guilt and guilt leads to more pain emotionally and physically.

Written By Jen Reynolds
Creator and Founder of FibroTV.com

Sunday-Day of rest

I woke up late Sun morning and got up, put my robe on, brushed my hair and then went back to bed.   I was so tired and my body ached so bad all the way down to the top of my feet.  I ended up snoozing off/on until 3:30.  I felt like something had sucked out all my energy, what very little I have these days and stomped on my body.  It was a miserable day.  Days like yesterday are so difficult to deal with when you have  fibromyalgia. You just want to give up.  So as they say, Sunday is a day of rest, at least it was for me.
Monday- a much better day, thank god!

stuck in the bathrooom!

Have you ever had one of those days when you are stuck in the bathroom?  I'm talking the "D" work to keep it clean.  Well I have IBS (Irritable Bowel Syndrome), and yes it is a syndrome everyone.  I have these "bathroom" days quite frequently.  You are bound to your home, you dont dare leave even to run to the bank or post office down the street, because "D" will interrupt suddenly and you will have an accident.  Believe me I have had an accident before in my car and unbelievably at home (ran to the bathroom and didn't make it, only 15 ft away)
I know this isn't a pleasant subject matter, but this "syndrome" is controlling my life!  If I dare to venture out, I have to make sure I know where their bathroom is located.  I can probably tell you where half the bathrooms are located in Lees Summit at retail businesses.  I should have invested in Immodium D stock!
I am afraid to go out to eat with anyone for fear as soon as I am finished with my meal, the "D" will strike, only because it has happened to me before.
Also when you get a bout of "D", a tension headache immediately comes on, something to do with a nerve signal between your gut and your brain, really its true! Its called the leaky gut sydrome, ARGH, another syndrome!  SO NOT FAIR!
I do know from my past experience, my IBS is caused by stress mainly, not what I eat. My body does not handle any type of stress anymore, this is my body's way of boycotting stress I guess.  Hmmm.  Maybe I need to invest in Depends!  Gotta go, literally!!!!!!!!!!!!!!!!!!!!!!!

Pain, Pain go away,
Day after day I live in chronic pain.  I have fibromyalgia and all of its related symptons. Life has been tough in the last 3 years.  I lost my job of 12 yrs, my finances, my friends, my Dad, MY LIFE.  Everyday I wake up from my Ambien induced sleep, I realize my body has been invaded by this pain just trying to get out of bed.  Sometimes I wish I could just sleep forever and not wake up and have to deal with this invisible pain.  I usually dont want to get up out of bed, I lay there and think about when I didnt have pain in my life and feel sorry for myself.  Finally I get up and make my way down the stairs to make a cup of coffee. My knees creek and pop as I make my way down the steps slowly.  Somedays I go back to bed after my coffee, or I usually end up on the couch.  I dont feel like getting out or goin anywhere (depression and anxiety have set in) I have had panic attacks so I take clonzepam to help with blocking those panicky feelings so I can try to run errands, get prescriptions, a few groceries, etc. 
I am waiting for my appeal with Social Security to get my disability pay.  I have worked for over 35 years, I paid in, I deserve it but the govt makes you go through hoops to get what you deserve.  I have a lawyer handling my case, but it is such a SLOW process.  I am now waiting for 6-18mths to get a favorable appealed decision and get my back pay, which is now 2 years worth of benefits, (approx $35,000) so close, but so far.  I was approved by my city pension plan a year ago based on depression, not fibromyalgia, so I do get that disability benefit but $625 doesnt go very far in a month.
 I worry, what will I do once my money is gone, which I calculate will be in about 7-8 months.  Will I lose my home?  Where will I go?  This is what I worry about on a daily basis. I dont hold out much hope that the govt will get me  my favorable decision in 6 mths time and get me disability backpay and monthly payments. Im sure it will take the full 18 mths.
I do visit my psychologist once a month, she in fact told me that writing a blog would be good therapy for me so here I am starting out today with MY first blog.  That is all for today, maybe, just maybe, I will have a better day tomorrow.