WAFM to DAHM

First I was a work away from home Mom and it was very hard....then I was a SAHM - stay at home mom and mother of 4- then I tried being a WAHM - work at home mom and that was awesome......But now I am a DAHM - Disabled at home Mom and I am doing the best that I can to make that Okay! Recently I have added caregiver and advocate to my 84 year old mother who suffers from Dementia and mental illness. Such is life... I hope you visit here and find a reason to smile and a little Joy!

Saturday, June 26, 2010

Onion Pie and So Much More.....

Much of the time I have trouble boiling water and most things I try don't seem to turn out these days.  When I find a recipe that is something that my hubby and I love, I get pretty excited.  When I make it (even remember to buy all the ingredients) and it turns out just as good as we imagined, then I am in heaven!!  I used to be a fairly good cook - no Martha, but decent.  Now it is hard work and way too easy for me to get confused and that is good for nobody - not even my dogs - even they know when to back away.

I tried this recipe last night and just crossed my fingers and hoped it would be eatable - well if I do say so myself it was fabulous -- just a fluke I'm sure but wonderful just the same.  The recipe is below - I did use fat free half and half and about a cup of the cheese and I added some garlic.   It all came together and it cuts so beautifully - could have been that Paula Deen Pie Dish - I don't know.......but who cares - it was Great!!!


Onion Pie
CDKitchen http://www.cdkitchen.com
Serves/Makes: 6 | Difficulty Level: 3 | Ready In: 30-60 minutes
Ingredients:
1 premade pie crust, 9"
2 cups thinly sliced Vidalia onions or other sweet onions
2 tablespoons butter (can use olive oil for half or all this amount)
3/4 cup milk (used fat free half and half)
2 eggs
3/4 teaspoon salt
3/4 cup packed grated sharp cheddar (used Swiss)
paprika (optional)
Directions:
Preheat oven to 350 F. Melt olive oil in skillet over medium heat and saute onions until tender, about 5 minutes. Arrange onions in crust evenly.
Beat eggs, milk and salt in a bowl and season with pepper. Pour egg mixture over onions. Sprinkle with cheese and a dash of paprika, if desired.
Bake until knife inserted in center comes out clean, about 30-35 minutes.
Recipe Location: http://www.cdkitchen.com/recipes/recs/67/Onion_Pie20310.shtml
Recipe ID: 31615
Don't forget to stop back at CDKitchen and write a review or upload a picture of this recipe!
This recipe is from CDKitchen http://www.cdkitchen.com
© 1995-2010 CDKitchen, Inc.
Onion Pie http://www.cdkitchen.com/recipes/print/31615,20310,s=6.html
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Wednesday, June 9, 2010

The Squeaky Wheel Gets the Oil.....

Yesterday while feeding our various pets (we have a zoo) I was reminded of the old adage, The Squeaky wheel gets the oil, meaning the one who complains the loudest and longest gets attention first.  We have two dogs and two cats - crazy, I know - especially for someone like me but they bring us so much joy.  Back to my story - the dogs - Maddie a Jack Russell and BJ - a Beagle-Jack Russell mix are normally always first.  As a matter of fact they get so excited about their breakfast that I don't feed them unless there is no one else around to do it.  They knock me down, cause me to spill the food and then commence to fight over the bowls and who might have more......then they beg for treats - bones, etc. - non dog food type stuff and believe it or not they both Love carrots - the little tiny sweet kind and will literally attack you for one.

Then there is the old cat who lives on the back porch - she just turned 19 on March 17 - no, really!  She is a calico and we got her when she would fit in the palm of your hand and she had a Siamese Daddy - quite a mix.  She is living on the porch now because it is warm and it helps her old bones and because she can't remember how to use a litter pan -- and we all know how that story ends. She is also very noisy like most Siamese and she makes the long MEeeeeee-OWwwwwww sound that will wake the dead and reverberate your brain.  Then there is the baby - Jessie - she is a tuxedo kitty and just turned 5 years old.  We got her at 5 weeks when we thought the old one was dying once again but turned out to be on her 15th or so life.  This little fat kitty does not meow or fuss or cause any real problems other than scratching a little now and then.

So when it is feed up time and I am handling the duties, I notice that she quietly watches me feed the others, tries to stay out of the way and then she makes a few little peeps and looks me in the eye as if to ask - my turn now?  So yesterday, I explained to her that the others make more noise and trouble so that is why they get attention first.  She turns her head sideways as she often does and looks at me as if to say "that's ok - as long as you don't forget me" - so sweet.

That brings me to my point - maybe those of us who have the invisible illnesses that we do, don't get the attention we need because unless we fuss and complain and call attention to ourselves, we are not noticed.  Personally, I have had a problem with that because I don't like complaining so I figure I don't want to be that person.  But......in this case we all must make an exception.  If you are ill and the problems are not apparent, you must stand up for yourself - be vigilant - keep track of your symptoms - call them to your health care provider's attention - don't sit and wait for them to be discovered because I am here to tell you it more than likely won't happen.  In this instance you must be the squeaky wheel and don't stop until someone comes with the oil can!!

Monday, June 7, 2010

Sun and Sand..........

My family has a vacation planned!  The first one in over 8 years - exciting - yes; worrisome - yes that too!  Why, you say??  Vacations have not notoriously been a good thing for me and I don't want to ruin my family's good time.  I hate being the downer in the room --- no fun at all. 

Believe it or not, even a vacation can be a stressful illness causing event for people with CFS/ME/Fibro and more.  The heat, sun, travel, having too much fun, can all cause exacerbation of symptoms and land you in bed for an extended stay.  I so remember years ago, going camping with my family (which I loved) and getting to much sun and then having a huge outbreak of fever blisters all over my mouth and nose - so sick and we had to pack up and leave early.  It took so long to get over that trip and I was still working full time at that time and no one could understand how I could go back to work and be worse off than BEFORE vacation.  Such is the life with these illnesses.

So here we are trying to give it another try and I am trying to be optimistic and get excited.....cautiously but excited.  Things to remember - lots of sun block (have to find one that does not cause breakouts), drink, drink, and drink water -- can't tell you how many times my hubby has had to go out in the middle of the night for meds for bladder infection while on vacation or at a conference (caused by the Interstitial Cystitis) and that is no fun - seems to always happen when all stores are closed.  Be careful what I eat and don't over do or over eat.....or over anything.  Easy right?  Takes practice but it is doable.  Then there is the drive to get there - don't get car sick - sit in the right place in the car; take meds before the headache comes and do all that you can to avoid any infections - sinus, bladder, ear, etc. 

I am surely not complaining --- just trying to make this an enjoyable time for my family and hopefully I will have some fun too.  ;o)  Just being with them is fun enough for me.  Many times I stay behind because it is just easier for them and for me and I do it knowing that they will enjoy the freedom; freedom from the worry and aggravation of having to deal with a chronic illness.  It wears you down and no one can understand unless they have lived with it.  Those of you who know - understand and relate.  We do what we have to and are happy to do it.  Sooooo here's to vacation!!  Enjoy ---- but not too much.  ;o)

Friday, June 4, 2010

Some Things Get Better While Others Go Down Hill......

For most of us, each day brings new challenges and struggles - for those of us with autoimmune issues, these can be complex.  It always amazes me that I will have a day or two that is fairly good by my standards, and I fall for the joke my body plays on me.  I start to think - am I better??  Am I really sick at all or is this all in my head?  Maybe I can do whatever I want and I just don't realize it.  Maybe all of my symptoms and conditions have disappeared and I was not aware of it.  Then --- as suddenly as the good days came, they are gone and the wave of pain, fatigue, confusion and too much more flood me with the reality that it is not in my head and yes I am still just what I thought I was  - someone who is very limited in function.

What is worse is when I begin to believe that I can do what I dream about doing -- over doing --- then I am quickly reminded what the cost of over doing is!!!  Days or even weeks of more debilitating symptoms than what I normally experience on a daily basis.  Therefore, we walk a tight rope - do enough to help but don't do too much.  Add to that the fact that this can be a different equation on any given day - it is not a sure thing or something that we can know for sure at any time.  Today - maybe I can wash and fold a couple of loads of laundry and be ok - tomorrow that may be too much.  It is all trial and error and more trial.  I tend to push the envelope and I personally believe that is I why I am not completely bedridden, but it could also be why my condition is moderate to severe rather than mild - who knows.  The only thing that I know for sure is that I am going to try to live this life that I have in the best way that I can as long as I can take a breath.  I would rather push a little to stay alert and enjoy my family and I believe that we each have to fight so that this monster does not over take us and take over our lives.  Don't ever give up the fight!  That is what keeps us going.

Thursday, March 4, 2010

I am the Face of Fibro/CFS/ME

There are many things that most don't know about me - and would not care to know.  Only those who have lived within my four walls know the complete truth.  I share them here in the hopes that we can laugh and cry together as we realize our similarities.  If you suffer from a chronic illness then you will truly understand.  Walk with me through my day.

1.  I am a very high maintenance female, but, believe me it is not in a good way and it in no way is about beauty.  I have to take lots of meds, be very careful what I eat, obstain from most things I enjoy just to be able to get out of bed and try to be a functioning person.

2.  No I am not on street drugs, I rarely drink alcohol and do not have a drinking problem, and I don't abuse prescription drugs......this is just me.  I fall a lot, I sway and loose my balance, get confused, forget words, look ragged most of the time and have extremely dark circles and bags under my eyes.  Unfortunately I did not have the good time to bring on this 24/7 hangover - this is just me - the me that I have become.

3.  I am not unhappy - why you say....because for years I had to pretend to be normal and try to work when I knew I was not capable.  I couldn't be honest about my issues and no one wanted to hear it and probably still don't.  But - now I don't have to feel ashamed and I don't have to pretend any longer - I am what I am and I am just happy to be alive and have my family and friends.  I have gone through the "Become" stage just like the Velvateen Rabit and what I am is what I am and that's ok.  My family and good friends accept this and don't question it any longer.

4.  I have purpose in my life even if it is smaller than what I once had, it is purpose all the same and we all need that - even if we don't think we do.  While my purpose may not matter to anyone but me, it gets me out of bed and keeps one foot in front of the other.  That is a wonderful thing.

5.  I am like Sleeping Beauty except with out the beauty part.  I have to sleep at least 10-12 hours a day to function and many days it is much more.  This has been very hard to accept but as a good friend tells me, what is the alternative??  I will take the sleep rather than the Big sleep - the permanent one.  :)

6.  Like many I have good days and bad.  Over the years my good days have turned into hours but I am thankful just the same.  Bad days can last well for days and days - sometimes months - especially during cold weather.  I mention this not for what it does to me but for how hard it makes things for my family.

7.  If I see you out somewhere (which is unlikely) I may not remember your name, even if I have known you for years.  I will more than likely know that I know you but maybe not in what context.  I worked with large groups of people over the years and most especially in my admin business and it is difficult now for me to put people in their correct place - did I go to school with you?, did we meet at a conference?, did I do work for you?  I know this sounds crazy but it is what it is. 

8.  Many friends have told me the age old thing - "But you don't look sick!" when they do see me.  Well if I am out of my house, I have taken a good deal of energy to look somewhat presentable and believe me it is not my norm.  I went to the doctor a couple of weeks ago in total frustration - feeling so ill and frustrated - in my sweat pants, white t-shirt and no make-up and my hair looking like a friz ball.  I had taken a bath and just dressed and went.  I normally never do that because I look like a life long smoker on a binge looking for a large box to spend the night in - seriously......and I have never smoked in my life.  Anyway - you just don't get the same service and understanding when people see you looking like that.   When anyone who does not know me well comes to my house, I notice they are noticably shocked at what they see.  It is what it is.

9.  Most days I stay in stretch pants and t-shirts because they are comfortable and they don't hurt.  Sometimes I sleep in the same ones I wore all day long.  I wear the same thing day and night and rarely wear shoes because they hurt to put on and they hurt my feet. 

10.  I no longer am able to take a bath or shower every day - shocker!  Not because I am too large or heavy - I am not that fat.  :)  It is because it takes so much energy that if I shower and wash my hair, I am spent for the day.  It is not likely that I will be able to do a lot more until the next.  I have to take hospital baths - some people have a funnier name for that, but it is when you wash everything important at the sink and change your clothes.  It works.  Washing my hair is a huge deal even though I don't have much.  I cannot dry it because I can't hold up the dryer for the time it takes.  Washing my hair and leaving my house does not happen in the same day!  Every now and then I make it to get my hair cut - several times a year - and I love it when they wash and dry it for me.  Hubby loves it when they blow dry it.  :)

11.  When I go out, I have to spend an inordinate amount of time trying to find something to wear that covers all of the rashes, scars from rashes, blisters, etc. and won't hurt so much that it will expend more energy than it is worth.  Hard to believe that once upon a time I used to dress every day in heals and hose, etc.  Wow - who was that girl????

12.  Yes - you may have seen me trying to get to a bathroom without passing go or collecting my $200 - if and more than likely, I am out and eat or drink, it is very probably that I will have a bathroom emergency.  I have been very lucky and have so far been able to make it without incident but just recently came dangerously close to a very bad incident in the Target store which would have left many shoppers very unhappy.    Their restrooms are just too far away!!!

13.  I can drive a car and I have a license to do so but you don't want me to.  I only drive within about a 5 mile radious of my house.  Rarely if I have to go further, I have to prepare and many times have to cancel a doctor's appointment because I just can't do it.  There is just too much going on and way too much for my rattled brain to take in all at once.

14.  Please don't watch me eat.....it doesn't really bother me but it may bother you.  I use a butter knife to push and shovel food onto my fork in neat small amounts so that it makes its way to my mouth without taking a side trip down the front of my shirt or worse.  For some reason my hands have decided that they do not have to follow the direction of my brain all the time and  take over when ever they feel the need.   The same goes for drinking - sometimes my head shakes or sometimes inexplicably I spill my drink or just drop it.  We go through lots of glasses and dishes.

15.  The hardest thing for me to admit is that I am no longer dependable and I think that I can do so much more than what is reality.  I say I can do things and I truly believe it when the words come out of my mouth but when the times comes to actually do it, it is a crap shoot - and my odds are not good.

Ok - so that is my top 15 - I could go on but let's not.  I know anyone who has read this all the way to the bottom had heard enough.  I don't disclose these things because I feel sorry for myself or want sympathy - I do it because I feel in my heart it will help others in the same position to believe that no matter what, life is worth living and good can come out of most anything.  We just have to mine the gold and sometimes that is really hard but it is worth the dig.

Sunday, January 24, 2010

Cooking Can Be Easy!!!


A good friend gave me the following recipe for Baked Potato Soup and I can't believe how easy it is.  I know for many of us cooking can be really difficult and I don't do much any more - for my family's sake and mine.  :)  This is very hearty but also very tasty.  You can make it with meat or not - I have two vegetarians in my family so it is always nice to find easy recipes like this.  Let me know how you like it.


Tony Roma's Baked Potato Soup
You can substitute vegetable stock for the chicken, and imitation bacon bits for the real ones for a vegetarian dish.  Serves 6-8
2 Medium Potatoes - Baked
3 teaspoons butter
1 cup diced white onion
2 teaspoons flour
4 cups chicken stock
2 cups water
1/4 cup cornstarch
1 1/2 cups instant mashed potatoes
1 teaspoon salt
3/4 teaspoon pepper
1/2 teaspoon basil
1/8 teaspoon thyme
1 cup half and half

Optional Garnish
1/2 cup shredded cheddar cheese
1/4 crumbled cooked bacon
2 green onions chopped

I saute the onion in the butter and then add to the soup pot along with the stock and water. Then cut your potatoes up (sans skin) and add to the mix.  I then added all of the seasonings and let simmer for about 30 minutes.  I then added the flour and mashed potato flakes and whisked a little to be sure everything was disolved and smooth except the potato chuncks.  Then add the half and half and stir well, reduce heat and simmer for about 15 minutes.  It is delicious!!!

Wednesday, January 20, 2010

Mirror Makeovers Traveling Book........



 I was given a wonderful gift by a friend and I know that anyone who reads it will agree.  Please visit the link below and check it out.  Even for those who don't have cancer, it is a like a welcome visit with a good friend.  I have a different type of chronic health issues and I really enjoyed it.  I found the book to be uplifting and inspiring as well as a guide or map to handle those difficult times in our lives as women.  If you feel you would like to sign up for the traveling addition, please do - it is a wonderful experience!!  There is also a video link below - check it out as well!!


 

Saturday, January 16, 2010

A New Year.......

I really can't believe we are well into the first month of 2010!  When I started the process of trying to obtain Social Security Disability Income, this year seemed too far away to even imagine.  Now that we have made it through the long process and I look back and, like much of life, it just flew by.  I was very fortunate that my case moved along - it could have taken much longer but the assist from a wonderful group called Allsup made all the difference.  I would greatly recommend them to anyone going through this and especially to those who have something that may be questioned such as an autoimmune disease.  They plowed through the issues and knew what to do at every turn.
It is funny - you say to yourself again and again - when I get my disability settled, I will do this or that and you dream and wonder what it will be like.  I am so very thankful and I can't even begin to comprehend how I got here but none of those things that I thought I just had to do or have matter any longer.  At the end of the day, you just want a little security and to be able to keep what you have, eat and have some health care and try to help take care of your family - similar to when you were well.  I am forever grateful.  Now, I fill my days with thinking about how, in my humble way, I can make a difference and help others who will follow me and have the same, although different, journey - because we all must handle the walk in our own way and with our own set of circumstances.  But - if I can make it just a wee bit easier for someone else, then I will feel that I have done something worthwhile.


Friday, December 18, 2009

It is Definitely a Christmas Miracle!



Last week I was working hard to try to prepare myself for my social security disability hearing and worrying that I would not be able to convey what is in my head to the judge.  I read so many things online about the hearing being the best possible chance to obtain benefits - my one and possibly only chance to plead my case.  Up until now all of the decision makers who worked on my case had only ready about me on paper and in the beginning had a few phone conversations with me.

As I have told my dear hubby many times, if anyone told me this story, I would have a hard time believing they were really experiencing all of the symptoms that I do on a daily basis.  Telling your story and having the judge believe in you is key and when you are a bit confused and very forgetful, that can be a very tall order.

Well, miracle of miracles, I got a call last Thursday that the judge was reviewing my case and had a couple of questions about my onset date.  After my disability advocate with Allsup and I discussed this, she said she would send the information to the judge and.........it may be possible that he would make an "on the record" decision and I would be approved without the need for a hearing.  Did I hear her right?????  After years of going back and forth on this (I first applied in January 2007), was it finally going to be over and end in my favor???  You can imagine - I was on pins and needles with my little laptop in my lap for the next half hour or so and she and I emailed back and forth a couple of times and then she said the magical words I longed to hear - "you do not need to appear at the hearing, there will be no hearing - congratulations!"  I was numb and truthfully I still am.  I guess I won't believe it until I see it on paper, it is surreal - a miracle of enormous proportion - not just for me but for my family.  I cannot express my amazement and thankfulness completely here but believe me when I say it is huge!!!

So may things run through my mind - will they call me and tell me they made an error and we have to start again - hopefully not!  I look at the future with some hope that I will finally improve, that maybe my family can have a somewhat normal life ----- normal by our standards anyway.  It is more than I can fathom at once and it will take time for all of this to sink in. 

The one promise that I made when all of this began is that I would do everything that I could to help others who have traveled along this path - those who are not as fortunate and those who are still hurting and in need.  I will not forget and I will continue to fight for those who have not been as fortunate because we must remember that we are all in this together!

Saturday, November 7, 2009

We Have Hearing Date!!!!!

Our Date is Tuesday, December 15th, 2009 -- We finally got the call we have been waiting for yesterday --- I still can't really believe it, but it happened!  I have been fighting for Social Security Disability for 19 months and it has been a hard fought battle.  My disability advocate had hoped that we would be able to get it without having to go to a hearing but that's ok.  I welcome the opportunity to tell my story - I am just hoping and praying that we will have a fair and open minded judge and the hearing will go well.  I get butterflies in my stomach just thinking about it - I am sure as the date approaches that will get worse but it will be worth it in the end - hopefully!  I am one of the lucky ones - my hearing has only take about 8 months to schedule - many in our state wait for over 20 months to get a hearing.
I have heard stories of things like this and I never really appreciated the gravity of the situation.  You just cannot imagine until you walk this walk.  This has really given me a new appreciation for anyone dealing with issues with their health and the dependence on the system for their well being.  In this country, so many of us are used to being in control - control of our lives and everything related to it.  There are always many factors that we just don't control - the weather, accidents, some illnesses, etc. - but at least most of the big stuff is in our hands.  When you loose your ability to work things change - you give up independence in many ways and are at the mercy of many people you don't know and will never meet.  For some of us that becomes a very frustrating journey and for many it turns into a long struggle.

I heard myself telling one of my doctors this week that I just did not want to be THIS person - I didn't want to be the one who was begging for disability income, who wore the label that says I can't work, the one who appeared to be useless to family and friends, community, etc.  I used to be a hard working, law abiding, tax paying wife and mother.  I worked for over 34 years of my life and paid my taxes - for 14 of those years I paid taxes as a self employed worker which means I paid in more as there was no employer to contribute.  Now that I am damaged, I have to beg to get back some of what I paid in and made to feel as though I am somehow asking for help that I am not entitled to.  This makes me angry and many like me but I fight the anger and try to be patient and I wait and I wait, and I hope that this decision will be made while there is still time to to try to repair some of the damage that all this waiting has done to my health.

Thirty-seven days from today a total stranger will sit in judgement of my situation and my future - I can only hope and pray that this individual will actually read the facts, actually truly know what is going on with me and will understand.......enough to allow me to receive some of the benefits that I have already paid for, so that I can try to piece the me, that I used to be, back together.......in some way.  I am so very thankful for this opportunity but I proceed cautiously because I cannot afford to get my hopes up again - each denial, each disappointment takes way too much out of what is left of me and that is just not fair to my family because they walk this walk with me, even though this is not what they signed up for.  So, we will count down the days with guarded hopeful anticipation and continue to travel this road and have faith for better days ahead.

Monday, November 2, 2009

Downwardly Mobile.......


Well as times goes on, we continue our path to being more and more downwardly mobile.  I guess that is a term that will mark this time period in history and we will all become too familiar with what the meaning is.
We all probably know someone who has been hit by this economic down turn and that is putting it mildly.

But what about the people you know who have the added stress of health issues and add to that the great health insurance dilemma.......then you have a snowball that becomes an avalanche.

It does not happen over night......usually it creeps in, one step at a time and then one day you look back and realize that you can't remember what one thing really started the decent and you know you may never be able to stop the fall.  You wonder if you should just roll on down and stop fighting the pull, the force that keeps you moving until you hit that hard rock bottom.  But.....would it be easier to let go - it is hard work to fight gravity...almost impossible but you continue anyway because that is your only choice.  It is not just about you and for your family, you continue each day two steps forward, three backwards and all the while, you keep hoping that one day you will wake up and the illusive disability money you have been fighting for will show up, your insurance will pay for your necessary and needed medications, tests, etc.  Things will not be quite so hard - you don't expect perfection or anything close to it - just not quite so hard.  But, you are ever so aware that you are very blessed - you still have a roof over your head, food to eat and loved ones.  While you are in danger of loosing those things - for today, they are still yours and there is still hope that you may begin a short climb back up - maybe you won't hit bottom - maybe you will just end up in a different place.  That is not always bad - just different.

Now you are just thankful to have some connection with others, some sort of phone, possibly an internet connection, cable television - those are all things that will go soon if your situation does not head in a different direction and you know that the lack of communication and exercise for your brain will make your health situation worse - the fear of the long hours without these distractions is scary - but still it could be so much worse and you know that.  You know in your heart that those are actually luxury items and just because one of you is working, that does not mean you can afford those things - life is hard and you have hit a rough spot.

It is funny - I thought of this blog entry while I was dealing with trying to change or get out of a cell phone contract that we had and could no longer afford.  With so much job loss, I know there are others who are where we are and I wonder how we will continue to afford these essentials that we have become used to.  Maybe we will have to make choices - I already know that of the three, I would choose Internet access without a doubt.  My 14 year old tells me the same.  While a phone is wonderful for keeping track of our loved ones, I have never been a real phone junkie - maybe when I was 14 but not for a very long time.  But - the Internet can give you entertainment, news, information, ways to do all that you can to protect your health, email to keep up with those loved ones.  For me it is a no brainer, but everyone in this situation will have to make this decision for themselves.  I know that if I were still able to work, my choice would still be the same because when I worked, I was online all day with my work.

Yes - the convenience of all of the other wonderful gadgets is so nice but not necessary and we will survive as best we can.  We will all learn to make a way in this new world that we find ourselves in and move forward in a different new way - not necessarily a bad way, but a different way.  Could be we will find other ways to make up for what we have lost.  I have to believe we will.

Sunday, October 11, 2009

October is Breast Cancer Awareness Month



 The month of October is Breast Cancer Awareness Month and I am sure that most know someone, have a family member or have been touched by this disease.  Please take a minute to visit the web page below.  This book and site were put together by Regina Savage, a breast cancer survivor who has decided to make the most of her experience and reach out to others to help them.  She is having a wonderful contest this month as well as her Traveling Book project.  You will not want to miss this - you can check it out at the link below.  We are all better when we work together and we become richer and our lives more full, when we reach out to others.


Friday, September 11, 2009

An Open Letter to President Obama


Dear President Obama:

I am writing you to give you my perspective on health care - my own individual situation is not so unique, in our country today....it is the reality of many. I hope you will give me a few minutes of your time to read through my story. Hopefully it will serve a purpose of some kind for many who find themselves in the same place that I am. I voted for you in the last election and I support you, but even if I didn't, I would hope that you would listen and understand because I am the voice of many. Regardless of partisan relationships and all that follows, I believe and hope that you are a fair individual with the best interests of our country at heart. I truly believe that good will prevail, if not in my lifetime, then in years to come.

I am a 52 year old female, married for almost 25 years and I have four boys - 3 grown and on their own and one still at home - a teenager. But, I could be any age with any family situation. My name is Lynne, but it could be Sally or Sam or Tom - because you see I am the voice of many. You don't know me and I am not well known, but our government and medical insurance companies are slowly killing me and putting an end to families like mine across the country. Sounds extreme - I realize - but look at the facts.

Forgive me if this goes on too long but I have to get this out - this morning I woke up with the words spilling from my brain so fast that I could barely scoop them up and put them to paper. I must do this while I can, because tomorrow they may be lost like so many marbles in my head rolling around and never coming together.

I had to give up my job 18 months ago - my situation may be a little different than most but it is common. I was self-employed for over 14 years and as my health deteriorated, I was unable to do my job and no longer had the strength to fight for it. I was an administrative contractor for a non-profit association in the State of South Carolina. As a self employed individual, I was not eligible for unemployment benefits, insurance, or any other perks that our state employees or corporate employees enjoy. Although I worked for this group for almost 14 years and was treated as an employee, when I could no longer perform in the manner they became accustomed, they were ready and willing to throw me out like so much trash - such is the norm in our society. But...alas, that is a story for another day.

The long story short is that I was 51 years old with no job, no income and I was disabled - a disability which was partly made worse by the fact that I continued to try to work, to do the right thing - hold down a job, bring in an income, pay my taxes! I fought this disability for the last 18 years and it has become progressively worse. Unfortunately for myself and my family, it is an auto-immune condition and therefore I am shunned by doctors, friends, and others who say "But you don't look sick?" and because it is not all black and white and is hard to diagnose and treat. The particulars don't matter because they are different for all of us, but the results are the same. We can't work, we aren't well, can't get anyone to hire us, cannot be dependable as we once were, and live with shame because we can't help support our families and do what is expected of us. We are not dying today and probably not tomorrow....but we will die sooner than we should because we fall through the cracks each and every day! The test that was not ordered that could have shown a small cancer will be found much too late or the medications that could have been prescribed for the deterioration of a brain that could have been saved, were never given.

Well, less than 6 months after loosing my income, my husband lost his job. Now I know you are probably thinking that all good citizens should be prepared for that - right? He works in retail management and has all his life and there is no job security there. This is the 2nd time he has been out of work in the last 4 years and all of our retirement, savings, emergency money, etc. is gone! With the first job loss, he was out of work for about 5 weeks and we survived, but after six months of my having no income, we are drained dry this time. My medications and medical bills ate up all of our money in the bank as well as paying bills. He is a good man, guilty of nothing more than caring for his employees and trying to do the right thing. But in our state of South Carolina you can be let go for any reason - we are a work at will state. I am sure you are familiar with South Carolina - an interesting Governor to say the least, and congressman that is more worried about his republican constituency than the citizens who are hurting or lacking.

So, we were without income for approximately 4 months - and he finally found another management position in February of this year. While he is making a decent salary, it is less than what he earned before and we bring in less than half of what we once did. We are so very thankful for this job but..... we still continue to fall through the cracks!

After 7 long months without insurance, we finally were eligible in April - something to celebrate right? Well soon after we dished out the first big premium to Blue Cross and Blue Shield, we received a letter concerning pre-existing conditions. This is not much of a problem for my son or husband, but for me and others like me, it will mean that most of my medical will not be covered until January of 2010! They tell me that if they find any mention - just a note - about any condition that I was seen for during the 6 months prior to this coverage, they will not pay. I only visited my doctor's office 2 times during that period of time - once for a prescription refill, and the other for and update on paperwork for my Social Security Disability filing at the request of my doctor. Well - BINGO - that visit gives the insurance company all they need to deny everything for me for 8 more months. Their reason for doing this - I was without insurance for 7 months! Does this make sense???

I would suppose there are two ways to look at this - 1. I will die for some reason before January of 2010 and they won't have to pay anything; or 2. Anything that possibly could have been treated during this time will get worse and be more costly in the long run.......Does any of this make sense??? In a discussion with the insurance company yesterday, I told the rep that I knew for a fact that I have a new diagnosis and new necessary treatment and she again stated that even though I thought that was true, the claim would more than likely be denied.

So, here we are - barely making ends meet because of the cost of health care, medications that we can't afford even with prescription insurance, and still waiting for a year and a half - over 18 months for SS Disability Income! The real kicker - I have been denied twice already because I did not have insurance, and therefore was not able to visit the doctor, and therefore must not be sick enough to warrant the disability income and so on and so on with the house that health insurance built!

I cannot give you the full impact of my frustration in this letter - I can only say that the pain this has caused my family is unbearable to me. This is not about me or my illness, as much as it is about what this has done to everything that we have worked for. I have been employed and worked for 34 years of my life and would still be if it were possible. I have paid my taxes and paid more than most due to the fact that I was self-employed for 14 years and now at 52, I am literally begging for help and hoping and praying it won't come too late - after my family has lost their home, their self respect, dignity, and worst of all, faith in doing what is right and believing that we will be protected and taken care of in our time of need.

I don't know what the answer is and I surely don't have the magic bullet....but I know that there is an answer to be found because there are too many in this country hurting and dieing for the same reasons. Some say "let the churches take care of people like that" but unfortunately that just does not work either. If we don't all come together with a solution and forget about partisan issues and games, we will all witness the death of something so much more important......a decent life and the belief that if you work hard you will be ok - somehow, someway.

Again, I apologize for the length of the letter - I am passionate as you can tell and I have been very fortunate and blessed in my life - but now I, like so many others, need help and I am sending out one last distress signal in the hopes that someone will notice us - here hanging on by our nails to the the ever growing crack that will soon consume us.

Saturday, August 29, 2009

What Would Your Mother Say...........


Well I know I am showing my age now, but I came so close to shouting at two college students earlier this week and asking them about the origin of their up bringing! I normally don't speak out when I see something I consider rude behavior, but this time, it was all I could do not to explode!

I had a doctor's appointment and after that went to visit my Mother at her apartment building downtown which is in the heart of our local state university - University of South Carolina or USC as we call it. On this particular day there were no parking spots at her building and I was forced to find one near a meter on a nearby street. When I tell you this street is a very steep hill, I am in no way exaggerating. I saw young people bracing themselves to walk down the hill it was so steep. I remember this particular street from my childhood - I was afraid when my parents drove up it because I believed that our car would fall backwards. If you have read my blog previously, then you are aware of how strenuous a trip like this is for me.

Anyway - I found a spot across from her building on this very steep street and pulled into it and carefully made sure that my emergency brake was up and the car was in park before leaving it. I did not have much gas and it did enter my mind that facing downhill like that might cause a problem when starting my 11 year old van but I was too exhausted to do anything else at this point. I had already driven around the block twice and could not find anything better and I knew that my Mother would be starting to get worried.

After a very nice meal with her and visit, I returned to my car exhausted and ready for a nap about 2 hours later. It was still there and had not decided to take wings and fly down this precarious hill and into oncoming traffic. Well - just as I had briefly considered, the car would not start. It has one of those gas tanks with a float and had I parked facing up the hill there would have not been a problem. But.....since I was facing downward, it would not start - even after many tries. I put the car in gear and tried to let it roll down the hill but I quickly realized that with the weight of the vehicle behind it and no power breaks or steering, I would more than likely crash. I literally stood up on the break with both feet and all my weight and was able to stop the car before it hit the little car parked in the space up one from me. In between the two spaces there was a driveway into what appeared to be student housing and of course my van was stuck right in that spot - anyone trying to get in or out of that driveway would have to pull over the curb to get in or out. Not impossible mind you, but a little detour none the less.

Well after all this fun, I was a little unnerved and exhausted. I got out of the car, where there was a cool breeze outside, and called my husband on my cell phone. I knew that I would more than likely get a lecture on why I should not have driven downtown on my own and etc. etc., but there was no other choice. As I expected he was not happy that I parked there but said he was on his way. As I was talking to him I slowly maneuvered my way back down to the bottom of the hill and I planned to wait for him there seated on a brick wall. I knew that I was too tired to make the walk back to my Mother's apartment and I didn't want to worry her.

Just as soon as I ended the call, I turned to see a young man at the top of the hill throwing his arms up in the air and mouthing something. I could not hear him from that distance but it appeared that he was repeating "What the ____?!$?%&" over and over again and motioning to my car. How did he know it was my vehicle - I looked around and I was the only one on the street walking and I was the only older lady with a big grandma purse so I guess he assumed the old van fit. I trudged back up the hill toward him trying to get him to hear me saying "the car is stalled and someone is coming to move it". Nothing - no response - no "Ok - I understand", nothing!! He jumped in his vehicle which was parked in the lot blocked by my van and hurriedly backed over the sidewalk and sped away without another look or so much as a "How do you do".

I was just stunned - I didn't expect him to offer to help or actually DO anything but he could have at least acknowledged that I spoke to him, especially after he completely over reacted to the situation. Oh well - I guessed that he was in a hurry to get somewhere - the life of a busy young college student.

Well I took a seat on a brick wall beside my van and waited, and waited, and then waited some more. My husband was a good 20 minutes away and would have to stop and get some gas to add to the van to get it to start so I knew it would be about a 30 minute wait. At least it was cooler than days past and pleasant outside.

When it was almost time for him to get there, another car rolled up beside mine and the driver rolled his window down and pointed to my car - it was another young man - obviously a student. I immediately jumped to my feet and told him that it was stalled and someone was coming to move it. Again, he rudely looked away obviously irritated and quickly pulled behind me and into the lot - no big deal. He got out and walked away without a word.

I was stunned - what had happened to decency and kindness??? I am mother to 4 young men and I am not bragging in any way when I say that I cannot imagine that any one of them would react in this way. They have stopped in traffic to remove errant lost turtles to the side of the road, gone out of their way to help stranded drivers and put their own safety in jeopardy to help others. I don't take any responsibility or credit for their being this way - we all just assume that it is the way to be. I didn't want these young people to do anything or take any time out of their busy schedules - just don't go out of your way to make me feel awful because you had to take maybe 30 seconds to go around my car. I just wanted to follow that young man to his door and fram on it and ask "What would your Mother say?????"

Whether there is a pretty young girl, an older woman, a child, a old man or whatever else, we are all human and we are all in this together. Showing a little kindness to each other does not cost us anything and we reap the benefits down in our soul and in our hearts. We all need to think before we react and this has surely made me more aware of this.

Long story short, my husband was able to start the car after a perilous ride down the hill with no breaks or steering and we finally got back home over an hour later. It has taken me days - more than a week to recover from this trip - but what is more important is that I realize that I must take my limitations into account when I do anything because unfortunately we cannot always count on the kindness of strangers........but I will be more vigilant about being a kind stranger!

Friday, August 21, 2009

Good Times...Old Friends...


I have been remiss, out of touch lately and have let my blog down. I just haven't had the words...thoughts that would propel me to write the way that I normally do. I have let the depression and anxiety that befalls many who are chronically ill, get me down and keep me there. I have not had the strength to fight the fight in the best way. But......then, out of the blue, this past week I heard from a very old friend. She is not very old - our friendship is. We knew each other as children attending the same church, same Sunday school class, growing up together as children of that era - rarely missing weekday church school or any opportunity when the dark red Lutheran church doors were open. In our time, that was our social life, our touchstone to a life outside our families and it was good - very good.

When I think back on those times, I can pull countless memories that were exceptional, full of just plain fun, craziness and love of live. All of the crushes that we thought we would never survive, dealing with our parents, siblings, starting middle school and high school. We knew each others parents and even grandparents and visited each others home on a regular basis. We were the kind of friends that you don't have to pretend with, that you could spend hours with on the phone gabbing about nothing and everything.

Well, we graduated from high school and went our separate ways and lost touch and 35 years have passed and so much has changed but many things still remain the same. The thought of this type of friendship brings a smile to my face, a bitter sweet look back - glad to be grown and away from those awkward times but a little ache to go back there, even if for just a day or an hour. To feel the breeze in my hair (awful frizzy curly hair in those days) and still have wonder about what would lie ahead. To listen to our favorite songs - The Carpenters - and dream of our true loves, and dance to the Osmonds and The Jacksons and swoon over lost loves. For us it was the Coffee House at our church on Saturday nights - om my gosh - dance and drink sodas and just have fun - anything was possible.

Not many adults retain those types of relationships and it is a shame. There should always be someone that you could tell anything, talk about absolutely anything and not worry about ridicule and feel the embrace of friendship. My husband is now my best friend and I feel so fortunate to have him.....but my heart does still ache for the friendship of childhood. Just a taste of it and the memories come flooding back and I feel whole again, even if just for today, I feel normal - whatever that might be and I feel that I lived in a time when we cared deeply and knew what true friendship was.

Monday, May 25, 2009

Being Thankful.........


Today, more than most, we all have so much to be thankful for!! I am sure each and every one of us knows someone who has served our country in some capacity and can bring to mind sacrifices they have made to do so. Some - the ultimate gift - their lives.

For me, I am so very thankful - I have four wonderful boys who are all healthy and still with me - 3 grown and on their own and one still at home. I know there are many parents who are not so fortunate and have given that ultimate sacrifice.

On days like this, my mind wanders back to a sandy haired little boy who lived across the street from us years ago. He would come to our door to play with our boys and he was always so polite and a gentleman. His name was Josh - the same as one of my boys and I was always fond of him. He grew up to be a very big boy and played football in high school and did well during those years. He made the decision to join the military right out of high school. He had been in ROTC and this seemed a natural decision for him. I will never forget the day that I received a call from a neighbor from the old neighborhood that Josh had been killed in Iraq. I could not and still cannot fathom the pain of his family. Josh was a hero and a very fine young man and there are so many more like him.

No matter what our circumstances or beliefs on this day, we all need to pause and offer up a prayer for the families of those who have lost loved ones for our sake - to keep us safe from harm - to do what they believed in and so willingly gave the ultimate sacrifice!

Saturday, April 25, 2009

Insurance...What a Beautiful Thing!!!


Well, after 7 long months, I am eligible for health insurance today!! I have never been so excited about seeing a doctor, with the exception of when I was pregnant. I am so relieved that my husband and son are again covered and I am so hoping that some new meds and tests that have been put off for far too long, can make a difference in our lives and in my plea for disability income.

I don't go out much, but right now but I am so looking forward to having blood work done and getting my check-up because this will hopefully mean that I can begin to improve - at least somewhat. I have been on a decline for about a year now and I know the lack of insurance has definitely added to the problem.

It is so odd that we take things for granted and don't appreciate them until we have to do without them. Having chronic health problems, you really take for granted that you will get the medications you need, that you will be able to go to the doctor when necessary - which is quite often. In the last 7 months I have not been able to do this and the two times that I did go in it was quite expensive for just a prescription refill or to have forms completed for my SSDI.

When your child runs a fever, a fear strikes you when you don't have insurance - even more so than normal. How will we get meds, how will we get him to a doctor??? I am just so thankful to have this period of time over and hopefully not to have to endure this again anytime soon. This experience has so helped me to realize the plight of so many and my desire to find solutions. This is something we all have to be cognizant of because we are all in this together and must work to help each other!!

Tuesday, April 14, 2009

Just because You Can........

Just because you can, doesn't mean that you SHOULD!

I need to plaster this saying all over my house and maybe even the palm of my hand and my forehead so that others can see it and tell me "Just don't do it!" If you have ME, Fibromyalgia, Arthritis or many of the other auto-immune diseases that are so prevalent, you can surely understand this little statement.

I have a drivers license, I can drive, and sometimes I do, but that does not mean that I should. I try not to unless it is necessary and never when I am very tired or early in the day. But, my son missed his school bus on this day - not his fault - and so I drove him to school. It was a necessary evil but as I was driving back home after dropping him off, I realized the many reasons that I SHOULD not be driving. It is only by the Grace of God and dumb luck that I have not had a major accident.

Most with ME or any other brain altering illness will know what I mean. While driving, I no longer am able to remember familiar routes that I used to drive every day, I become confused as to what button or dial makes the turn signal versus the lights and wipers work. My car is 11 years old so I can't blame it on not knowing. Left or right pose a problem and can be easily confused and the more anxious I become, the worse my driving becomes. My son would tell you that I wait way too long to pull out when making a turn, trying to be sure that no one is coming and I am doing the right thing. This often causes problems when those waiting behind me are no so patient. The Interstate is a very scary thing and I don't feel comfortable traveling there at all anymore. It is all too fast and not within my control.

The same can be said of foods like chocolate, beef, sugar - just because I can eat them - my hand goes to my mouth with a fair amount of ease - it DOES not mean that I should! I won't begin to die immediately if I do but there will be consequences and sometimes we don't even know what they will be. Over doing in any capacity has many consequences - especially for my family - but I do it anyway and suffer later.

My point here is, if we know there are things that we CAN do but just SHOULD NOT do ---- then Just don't do it!!! This little rule does make life a little small bit less unpredictable in a world that seems so out of control and can make each day just a little easier. When that box of brownie mix whispers to me again, just for today, I may tell it to be QUIET because I can't partake - just for today!

Monday, April 13, 2009

Spring Things To Do...

It was another blustery day here with lots of rain and clouds but a nice day just the same. Again my little bird friends outside my little window make me smile. They were busy as usual today doing whatever it is that birds do and the squirrels were running all about digging things up and burying others. The Blue Jays were in the trees making their warning noises to scare all the cats away. My front and back yard seem like critterville this time of year and I just love it. It is sort of odd though - we are in the city, close to a traffic filled road but still we have so much life going about their daily business in our yard - even small brown rabbits can be seen scurrying about at night trying to remain in the shadows with their white fuzzy tails lighting up the darkness.

All of this happy activity makes me feel a little sluggish and slow at times but most of the time I feel the joy that these creatures have in their simple daily routines. My routine now is so much more simple than it was even just a little over a year ago. My husband and I have a routine worked out - he works a good many hours as a retail manager of a large grocery store. So, I try to do what I can to make his days a little easier since I am not working any longer. I don't always succeed but I always try. My goals each day are to get out of bed (first big hurdle of the day!), get my 13 year old up and off to his bus; remember to brush my teeth, :), try and pick up around the house - things like dirty dishes, laundry, etc.; make the two beds in our house and help get things moving toward some sort of dinner for the 3 of us. I would have laughed if someone told me a year ago that that was all that I did all day!! If my day is really good, I try to throw a load of laundry in the washer and try to remember to put it in the dryer and I put some clothes aside for my hubby to wear to work the next day since he is normally out the door around 6:00 AM. And last but not least, I try to plug in his cell phone to recharge for the next day and have his coffee set up for the morning. It is hit and miss and some days I get them all and others none but I always try.

This all may sound mundane and trivial but for me they are small accomplishments that help my family and keep our little house running. They are the contribution that I can make to this family and feel needed and somewhat useful. We all need this - just like the birds and the bunnies - a since of importance for someone - a job to do. At least for now, I am just thankful to be and to do what I can with the hope that I can make things just a little easier for my family.

Saturday, April 11, 2009

Struggling to Put the Pieces Together...


It is the Saturday before Easter and I have been trying to clean up a little in preparation. Unfortunately with my being so slow, I don't feel like I make much of a difference. My youngest son (13) is helping and that is so appreciated. I find myself very frustrated and irritable today and the cause of those feelings lie in researching my illness and trying to understand what is going on.

For some arbitrary reason, I decided to look up M.E. this morning - that is the newest name added to my litany of symptoms, etc. It is fairly common knowledge that Chronic Fatigue is for the most part referred to ME/CFS now. I decided to find out what the new name means and what it could mean to me.

Keep in mind that my quest for knowledge is mainly to try to get the pieces of this puzzle that has become my life, in an orderly group....to seek to understand and help my doctor to understand. Well, I almost fell out of my chair when I stumbled upon something called A Hummingbird's Guide to M.E. ~ Myalgic Encephalomyelitis. I could have written the symptom list myself from my daily life. Why can't the SSDI people use this information in deciding my case. If you have this or know anyone who does, then you will want to read this group of articles. It is very eye opening and will begin to bring sense to this illness that many of us have not had before. It also has links to more sources and information.

I have had my head in the sand for a good many years now, and I believe that all of us with disabilities must be our own advocates - we must use our last ounce of energy and intelligence to research and assist in our own treatment. Otherwise you are destined to be misunderstood and denied your proper rights as a disabled individual. Rights that I would fight hard for in the assistance of another person and now must fight for so that my family receives the assistance and understanding they deserve in handling my illness. Be good to yourself and learn all that you can about your own disability or that of a loved one.The Nightingale Definition of