Grin and Bear It......Really???

Now that I am older, I look back and realize that I wasted so much of my life being negative and focusing on problems and issues.  I know that sometimes we all be come overwhelmed and must have those moments but they used to be hours on end for me.  Sometimes we can't see past the limitations that we are facing and they surely will get us down but we can't let em keep us down.

Funny thing is that my positive attitude and try to make the best of things mantra have not always served me well.  When I was going through the disability process, I was given a disk containing all of my doctor's visit notes and information.  After my first denial I sat and read through pages of notes that were nothing short of shocking.  Over and over again, different doctors I saw stated that I was pleasant and appeared fine, smiling and not in apparent distress!  Really......my can do attitude and determination to smile through the pain were now being used against me....WTH????? 

I still try to be pleasant and I still believe that a positive attitude will make chronic illness more palatable, but having said that, when you see your doctor you must be brutally honest and don't hide anything....this is one place you must let it all hang out.  I still struggle with having a good relationship with my doctors and not being that pesky whiny person they all hate to see, but as in all things, you must find a balance and err on the side of what is best for your health.  We must be our own best advocated - no one else lives in our bodies and no matter how much you feel that someone else can speak for you - most of the time they don't or won't know the depth of your pain.

So grin and bear it ----- NO!  Smile through the pain maybe, but focus, make a list and be adamant about what your needs are.  Nothing will improve until you are able to take your care into your own hands and make your doctor your partner in improvement.  Hard to do - yes, impossible NO. 

Irritability.....UGH!!!

Am I the only one??  One of my most frustrating symptoms is Irritability!!!  I know that some of this is caused from being in pain - it seems to make my fuse a little shorter.  Sometimes it just sneaks up on me and I blast off with no warning.  My hubby is a little oblivious at times to what triggers these outbreaks and I feel horrible when I snap.  It feels like my nerves have been roughed up with sand paper at times and the least little thing will set me off.  Today the impetus was cracking ice by the hubs .....  even after the offensive noise or irritant stops, I am still feeling raw.  It's as if I have been plugged into the wall and electrified - truly.

Now here's the rub, I have taken Excedrin for the pain which contains caffeine and had one cup of coffee to try and move just a little.  So if I take something to soften the blow of the electrification, then I am a zombie with negative energy - not just tired but totally wiped out.  So there is the daily choice of being on the edge or a lump on the couch.  I realize there are other drugs out there for the pain and I do use some other NSAIDs at times but I cannot take narcotics and I have a very low threshold for drugs in general - another words a very little goes a long way.

So - I try to explain again that startling me, waking me up from a deep sleep for no good reason, or making extremely irritating noises just may cause a backlash that I cannot control.  Nothing horrific but unpleasant just the same.  Let's take note - Mom does not do well with certain irritations so unless there is a compelling reason for them, we won't go there today.  We will all be happier around here and we will all live to see another day.....

Weather and It's Effects.......

Do you have big swings in how you feel when the weather changes?  I sure do and sometimes I just can't get my head around it.  I am fortunate that I live in a relatively warm climate in the south and at some points during the year, I see significant improvement.  But any extreme will cause a halt in my progress and send me reeling backwards.

Right now we are having some cold wet weather and little sunshine and it is very hard to get myself out of bed and even harder to get dressed or move.  Pain is throbbing in all sorts of places and nothing I do seems to quiet the rage my body is sending out.  I truly don't know what I would do if I lived up north or anywhere where there was significant cold weather for long periods of time.  More than likely I would be in bed or huddled on the couch for those months.

As it stands now, I have pretty clear ups and downs associated with the weather and the time of the year.  My norm is to be fairly down and out November through March or so depending on how early Spring comes.  I am just so very thankful that there is a reprieve and things do improve when it is warm but not too hot.

Heat brings about it's own issues and July and August can bring on other issues such as extreme fatigue, sweating and shortness of breath but not as much pain.  So my best months are somewhere in April and possibly May and Fall months of October and maybe November.  I would have to say that Winter is the worst unless it is very mild.

I have also begun to realize that diet plays into this range of temperatures.  If I eat lots of foods that cause inflammation such as those we normally have at Thanksgiving, then I will exacerbate the effects of the cold or heat - whichever is the case.  So I am trying to learn the signals and fight the fight before I am totally down and out.

Please know that none of this is mentioned in an effort to complain, just to think out loud and share information that may make it easier for us all.  I have been on this path for quite a while and if I can help someone who is not as far along, then I would surely want to do that.  I wish you all of you and those who love you a cozy and warm Winter!

To Do or Not To Do......

I have talked about the idea of making decisions on energy consumption and the benefits versus the downside before.  What???  What I mean is that for those of us with a chronic illness, going out or doing things must be weighed with what the consequences may be.  For me, I can occasionally go out to a function, shopping or a visit somewhere but I am always aware there will be a cost and sometimes it is bigger than I anticipate.  Over time I have learned ways to lessen the damage and to make the down time a little shorter after an outing.  If something comes up and I have not had time to plan, then I will surely pay the price and so will my family.

Another thing we always must be aware of is that my ability to do something can change from day to day so planning is always noted with the fact that I will if I can.  Unless it is something very important, many times I do need to change my plans and make the decision to stay home and rest.  Life goes much smoother and is more enjoyable when I listen to the signs and realize that today is not going to be the day and that is okay.  One of the most important lessons that I have learned is just because you can does not mean you should!  Lots of trial and error and long bouts of being down and out have taught me this all important rule.

Another issue that rears it's ugly head for me is that when there are plans and something that I am looking forward to, I have the tendency to get over excited and not be able to sleep.  That is the surest way that my plans will need to be cancelled.  Extra rest is necessary to be able to get out and enjoy something and without sleep, I am headed for disaster for days on end.

Last night my hubby and I went out, got dressed up and attended a local charity event that was important to us and part of his job at times.  While we were walking to the convention center where the event was held, I mentioned to him that some people looking at me would thing that I look absolutely fine and would be appalled to know that I am on disability.  My hubby quickly replied that if they knew what I had to go through before and after doing something like that, then they would understand.  It was a short evening and of course we came home and back into jammies I went and collapsed on the couch......but for me it was worth it and we had a really nice time.  Today will be a day of recouping and that's okay too because we made the decision to expend that energy and did so wisely.  Just like the spoonie adage, we must chose wisely to make life more liveable!

It Took How Long....

I am asked many times how long it took me and how did I get my disability.  Many times I don't tell the whole story because I am afraid it will discourage others and they may not even try when they really need to be approved.  It is a very long process fraught with many battles, lows and highs and frustration.  But, having said that, I will add that it was worth it and I do think it really helped me to realize that some things are truly worth fighting for.

Here is my story and I tell it in the hopes that it will help others in the decision process and give some the courage to do what they need to do.  I first filed in February of 2007 ---- I was diagnosed in December of 1990 with ME or Chronic Fatigue Syndrome and Fibro in June of 1991.  Before being diagnosed I worked full time with three children and was miserable much of the time.  My symptoms started suddenly in 1983 after a bout of Mono that never really went away.  I would get better and then be sick again.  It actually turned out that I had had a bad case of what they called Glandular Fever at age seven which we now know is also Mono.  So...this bad bug was probably dormant somewhere for a very long time.

Back to my disability story - I was laid off in January of 1991 from my full time job and was unable to get another because of this illness.  After that I made up my mind I would find work that I could do from home so that I could rest and work at intervals that would work for me and besides I was relatively young way back then.

I was able to keep working at home doing contract administrative work and I loved it until Osteoarthritis reared it's ugly head and I began to have debilitating cognitive issues that made it impossible to do my work.  When I first filed in 2007, I quickly became frustrated with the process and gave up and continued to try and work part time and my family helped me try to keep my contracts.  That didn't last and the stress of trying to do even part time work was taking a huge toll.  On April 16th, 2008, I gave up and let go.  I realized that I no longer had the cognitive abilities or energy to work and my husband who is the closest person to me, agreed.  He knew it was time as well.  Even still, I waited until October of that year to file again.  I kept hoping I would find something I could do and believe me over the years I have tried many things.  I just didn't want the stigma of receiving disability and I wanted to be free to do what I wanted to do.

I downloaded the forms and completed them myself and mailed them off and for the first few weeks I thought the process was going to move better this time.  I spent much time on the phone with representatives from our local Disabilities office going over my information and answering questions. They talked with my husband at length for health and behavor1al history and details about my daily chores and even if I cared for pets at home.  I started to believe I would be one of those very fortunate few who just might get approved the first time around.  Looking back I realize that I should never have let myself believe that.  I later found out that it was very rare to be approved in the first round and you almost always have to be terminal or at the very least have cancer.

The day before Thanksgiving that year I called for a follow up and was told that I had been denied and that they had suggested that I go back to what I was doing.  I was truly shocked about how upset I was at this determination.  I knew I would be disappointed but I was so upset that I really had trouble consoling myself.  I later realized that to me it was just another way that I was not being taken seriously, that my illness was not being understood and these nameless, faceless people were making a decision about what they believed I could do without so much as a meeting.

At this point I knew that I needed help.  A friend of mine had told me that, when going through this with her husband, she used an advocate and he was able to help get him approved.  I talked with this gentleman several times and I learned many things from his assistance.  In the end I decided to go with an advocate group, Allsup, mainly because they had  a good ratio of approvals and specialized in illnesses such as mine.  After my initial conversation with a representative she agreed that I met all of the criteria and scheduled me for a phone consultation.

The long process began again and I spent many hours completing new forms and in conversation with representatives and with the individuals at the Disabilities Board.  I was also able to get a disk with the information from my decline which gave us some insight into what my doctor's had reported.  The long story short is that I was declined once again.  This time it didn't sting quite as bad because my advocate had prepared me for this and advised that I would have a much better chance once I got to a hearing and was able to meet the judge in person.

Finally I was on the schedule to be set for a hearing in the Fall of 2009.  I was told it could take as long as 6 months to a year to get a date.  As our situation was getting more dire and I was unable to have any medical care during this time, I asked my advocate if my financial situation would change or make my situation any worse.  Surprisingly she told me that I should submit copies of foreclosure notices on our house and medical bills to be considered as a hardship case.  As soon as I submitted this information my hearing was scheduled for December of that year.  I was a nervous wreck - more than likely this would be my last shot and with my cognitive issues, I was not sure I could be my best advocate.

Over the next weeks and months I became more and more anxious and afraid but was reassured by family and my advocate that I could do this.  I wasn't so sure and I knew that I would be devastated by another denial.  Just a few days before my scheduled hearing, I received a phone call from Allsup stating that the judge wanted more information on my initial filing and subsequent one.  Amazingly after a few exchanged emails and phone calls that morning, I was told that if I was willing to go with the April date as my date of disability, then the judge would approve without a hearing.  What????  I was in shock - I couldn't even comprehend what was happening and of course I agreed and the rest is history.  After years of angst and worry and disappointment, I heard or should I say read, the words You have been approved!   A couple of months later I started receiving my benefits and even more than the financial support, I felt redeemed, believed, and absolved of all of my guilt over this illness.  I was finally getting the affirmation that all of this is real and someone understands and know that no one would ask for this or go to these lengths if they weren't really sick!

Okay - what can I share that might be helpful with the process.  These are a few things I wish I had know or understood from the beginning.  I hope they help in some way as you walk this path as well.

• Don't expect any of this to be quick and easy - somehow it could be but don't allow yourself to expect it to be
• Get help - whether it be an advocate or an attorney - find someone you feel comfortable with and go with them - someone who is educated in your illness and filing for disability 
• Don't give up if you really need this - that is how they weed out those of us who are really in need
• Find a doctor who truly understands your illness and know your full medical history
• Keep yourself knowledgeable about how your illness is treated by Social Security and know yourself and what you can honestly do
• Get a letter from your doctor stating your limitations and why you need disability
• Be painfully honest about every detail of how your illness affects both you and your family
• Do everything you can to make regular doctor's visits - even when it is a strain on your budget - I didn't and it hurt my case in the long run.  They assume you can survive if you are not seeing your doctor(s) and in the end my health suffered as well
• Don't let shame or guilt over being ill bring you down - no one would want this or ask for it!
• Keep your head up and find things to keep you occupied and that give you joy - life does not begin after you are approved - enjoy it in some way each and every day!!

I apologize for the length of this post.  I do tend to go on a bit and if you have made it this far, I sincerely hope you gain something from your time reading this.  Good thoughts and blessings to you!

 

So Much Joy and Some Tears....

This year has included so much joy for our family as two of our four boys will be married by year's end.  The first was in April in the beautiful Spring we enjoy here in the South.  The second will be a wonderful Fall wedding which is also a gorgeous time of the year here as it is cooler and the leaves are bright and colorful.  So that means that three out of four have found someone to share their lives with and we are so very fortunate to have such wonderful young women in our lives.

This year also has ushered in the final year of high school for our youngest and he will graduate next spring.  My how time flies and it truly does seem like yesterday that he was toddling around in diapers with a toothless grin and bald head.

Sadly - these happy occasions with all of the accompanying joy and love also bring about tears and frustration when you have a chronic illness.  Now I realize these are tearful moments for everyone, but for me, I shed a few tears here and there for different reasons.  There is the frustration that comes when we cannot afford to do as much as we would like for our boys because Mom hasn't worked for almost five years; there is the sadness I feel when I can't physically do things that I would like to, and be involved in their activities and festivities; and then there are the tears when at the end of a wonderful day of joy I am racked with pain and stiffness that will keep me from sleeping and the impending doom I will experience knowing that this overdone body of mine will revolt and remind me that it is no longer capable of doing what I so long to do.

But along with all of the tears, we experience the joy of our children and the fact that I can be present, even if in a limited way, and enjoy these triumphs in their young lives and make memories that I hope will be with them for a lifetime.  As with anything in life, we all have valleys and peaks and as I have been told, without the valleys, there would be no peaks.  I chose to embrace it all and enjoy every minute for life is short and time will not stand still for anyone.  As the old song goes I wouldn't have missed it for the world......

It's All About the Balance.....

As I was about to doze off last night, I thought about the unbelievable balance that is involved in all lives - for all living things really.  Then my mind quickly moved on to the required balance of lives that include a chronic illness.  Many times we think that illnesses like the ones we experience are different because we many not wear the obvious label of being ill.  But...not well we are, and the balance we must find each and every day requires quite the learning curve.

I, like so many, have fleeting feelings on a good day that maybe it's gone - maybe it never existed and I am fine.  Maybe the collective "they" were right and it is all in my head!  Then, like the sun rises, the reminders of my illness creep back in and I am once again reminded that when I push myself out of balance, I will quickly be given small warnings that let me know that more trouble is on the horizon.  I am so very fortunate that I am in a place in my journey that my severe pain is not daily any longer.  If I am very careful and work very hard to balance my life, my symptoms are lessened and I can do a little more than I once could and I have some really good days.  This has been a long process for me and started over 20 years ago.  In the beginning I was miserable much of the time.

So what is the point here - life is a difficult balance for all life forms but if you do have a chronic illness, it is not a choice and it is imperative.  If you have children and or a spouse, a job, etc., the balance becomes even more important and you must save the best of yourself for the most important items on your checklist.  Chose wisely and pick your battles - know your limits and tune into your signals and know when you are abusing your system because as surely as the sun rises and sets each day, your more severe symptoms will return with a vengeance if you push beyond your limits.  This is not always fun - my hubby helps me by reminding me of the small things that I tend to do like staying up too late, not eating right, doing too much, letting things upset me, and over thinking things.  Small things for most but very big things for people like us....know your triggers - make a list if you have to.

Another thing that throws a juggling ball back up to our tightrope is that our triggers change and morph themselves over time so be alert for changes and know your body and mind.  It takes time and being quiet to listen to what your body tells you, but the payoff is so very worth it.  Over time you will have many more good days and learn to lean into this new life and make the very best of it.  It is different but it can be okay too!!

Miracles....What Do You Think....

Miracles are subjective in many cases......sometimes I think it is a miracle if I lose a pound.  Many would say that is just in versus out - science.  We can all chose what we deem to be miracles - or can we?  Sometimes there is no logic to it, we just BELIEVE!  Miracles aren't about logic - they defy logic and common sense.  We don't know why and we can't explain it.  There have been several outstanding miracles around me in the last year and then there are smaller unnoticeable ones each and every day.  I have to be aware and open my eyes wide, sniff them out and most of all be open to the possibility of their existence.  We can all do it - it just takes practice. 

This year I am making a strong effort to Believe and look for miracles around me as well as doing my best to be as positive as I can absolutely be.  What does all of this have to do with chronic illness you say....everything!  It is proven scientific fact that our attitudes about life have a strong impact on how we recover and live our lives.  I know that when I am in a negative frame of mind, I feel much worse.  I know and realize that some of this is not in our control but if we just try to take control of what we can and chose to see things with rose colored glasses, they will become more rosy.  What can it hurt to try - we may feel a little silly at first and some will think we are crazy but hey who cares.....

I have to thank Susan Branch  for the graphic above.  She is a wonderful artist and her blog and web site bring me joy each and everyday and I don't even need my rosy glasses to view it.  She is pure joy and I steal borrow from her all the time.  She is such a great inspiration.

http://www.lilblueboo.com/choosejoy

Another miracle worker you will want to visit is Ashley - she is the artist/brains behind Lil Blue Boo!    Please take a minute to read about and get to know Ashley, Boo and Mr. LBB - they are the most amazing family and Ashley has taken a scary situation and made it joyful!  Her motto is Choose Joy! and she lives it everyday, even with chemo, loosing her hair and so much more upheaval in her young life.  Ashley is the age of my children and I so completely admire her and love her from afar.  But more than that she is an inspiration to me and so many others each and everyday in every way.  Each day I pray for Ashley's Miracle and I hope that you all will do so as well.  She is a miracle for each of us!

A New Year.....

A fresh new year ~ a fresh start - hope.....that is what most of us look for each time a new year dawns.  At least I know that I do!  I realize it is just another day on a continuous calendar and nothing really changes but I like to believe that it does.
I love this graphic - the title is "Fish out of Water" and so describes the way that those of us who have invisible illnesses feel much of the time.  We feel out of sorts and out of place.  It is very hard to understand something you can't see and we all know this.  But....each and every year we all hope and have faith that one day these diseases will be better understood and most of all that we won't be labeled as lazy or crazy or worse.  One day a new year will dawn and people will say "How did they do it?"  "How did they go on knowing they were being ostracized for something that was out of their control?"

I know that I am very fortunate in that I still am able to enjoy life even with it's changes and new direction.  Many are not so lucky and spend each day, each week, each year, dealing with severe depression and isolation for reasons they cannot comprehend.  We all have to open our eyes and see that just because we may not understand and may not see the problem, that does not mean that it does not exist.  Doctors, care givers, family, and friends owe it to our loved ones with these types of conditions to listen, seek to understand and learn all that you can in order to be supportive.  It can be a matter of life and death!