Smell What?......

I know are have all heard of aroma therapy and the idea that smells can make us feel better, help us sleep, etc.  I believe in some of that but mostly I just use good smells to get rid of the bad ones.  Well, Hubby and I picked up one of those decanters with the sticks and the oil and it was pumpkin scented.  I just love fall and normally I will have fall scented candles around and stuff like that.

I don't know if I am just getting older or what but since I opened that smelly thing and the warm pumpkin scent has permeated the rooms in our house, I have felt a burst of Fall Feelings!  I am now a firm believer in this scent thing.  I have actually visualized that it will be cooler when I step outside (that's not happening - I live in SC) and I imagine pies baking, and I feel a little more festive.  It has brought about memories and feelings of Falls past and transported me from the mundane and everyday into a world of holidays, turkey, falling leaves and so much more.

Why do I mention this you say - I am thinking that those of us who suffer from chronic illness and pain could benefit from more of this type of therapy.  I know we have to proceed with caution because many of us are also very sensitive to smells, etc. and I am included in the group.  But.....there are many natural scents that we can use such as vanilla that will do the trick like my pumpkin.  Warm vanilla sugar is another favorite of mine.

Now.....the only drawback is that many of these make me hungry!!!  Ugh!!!  Oh well - good with the bad - right?

Always Learning......

I have been so lax lately about my blogs - just haven't been able to get the words down.  I have lots of things going on in my head - if only there was a direct link to my brain that would print it out for me.  Ha - that may not be such a good idea much of the time.  :-)

I read a very interesting article a few weeks ago and it really hit home with me.  Along with the Fibro and CFS/ME, I have ADD and other learning disabilities that were never addressed as a child.  Back then we just didn't know much about this sort of stuff - I just thought I was stupid and while that may sometimes be partly true.....I don't believe it is the whole story.  This article has really given me the ability to ease up on the crushed self esteem that had been caused by the combination of all of these things.  Maybe.....just maybe it's not necessarily all  my fault.  Time has always been allusive to me and math - lets don't even talk about that - I just simply am awful at it!  This article talks about how many of us have these types of problems and they are common among us.  I don't believe anyone is really sure about why.  Check it out and it may speak to you as well.  I always feel better learning more and the more I know, the better I feel.

http://chronicfatigue.about.com/b/2009/11/24/problems-with-time-math-in-fibromyalgia-chronic-fatigue-syndrome.htm 

Chain of Causation.......

Since I tend to watch a good bit of television, I love comedies - laughter helps no matter how I am feeling and I get hooked on programs that are about families.  One that I recently found is "Are We There Yet?".  It's about a family with tween kids and a mom and dad who are busy working and trying to make this family work.  Always funny, right?  Well, Hubby and I were talking this morning about a line they use on the show quite frequently ~ Chain of Causation.  It's the kids way to explain their way out of things and the adults usually follow along.  I love it and if you are a parent or were a kid, you totally get this.  Just in case you don't, below is the definition.

Definition of CHAIN OF CAUSATION

• A series of events, each of which was caused by the immediately previous event.

• A series of events or situations interrelated and leading to a particular effect

For those of us with a chronic illness, our chain of causation is quite important because it allows us to trace back our steps and possibly figure out what caused a particular flare or symptom.  It's like a puzzle for me and over the years I have gotten pretty good at it.  I over ate on Tuesday night and had some fatty fried foods, and therefore I suffer on Wednesday and Thursday with tummy problems and more inflammation and......therefore more pain as well.  It is the same general idea as the balance discussion, but gives you a little better look at how far down the road the actual deed or action can cause difficulties.  Keeping a journal can really help with this and help us all to make better decisions or actually realizations that we may not otherwise come to easily.

Sometimes I feel like those V8 commercials and want to bop myself in the head - why didn't I know this already or notice that one small action can cause so many negative reactions.  Simple - right?  Not always because there is such a vast array of symptoms and causes.  Sometimes my Hubby is the one who puts the pieces together because he may notice something that I miss.

Good Luck with your chain and hopefully we can all have better days by a little change in our thought process.....thanks to the kiddos on Are We There Yet?.

On the Dark Side.......

 Ugh.....I hate when I get like this and I can't seem to help myself.  I am in a funk and it happens every now and then - not exactly sure why, all I do know is that the deeper I go the harder it is to find an escape.  I don't know if you can label these episodes as depressive or just anxiety or just part of this whole syndrome of illness.  But...one thing is for sure.....it's not pretty and my family knows better than to poke the bear.

The process is always pretty much the same.  I will be going along making small improvements, feeling that I am doing better, feeling like I have a harness on this crap and that even though I have to live my life differently, I can manage.  Then, out of no where it comes in and slaps me down to the floor and says Oh no you don't!!!  Don't even think about it.....!!!  Okay - I give, I say Uncle and I creep back to my corner and start sleeping way too much cause I can't help myself.  I eat sweets and eat too much and don't do much of anything which makes everything worse and round and round we go.

Maybe it is because we have had lots and lots of rain and cloudy days, maybe it's winter and possibly it is being alone way too much while everyone around me goes about their daily lives.  Possibly my meds need to be tweaked.....I sure don't know and unfortunately there is no easy answer and no where to readily seek advice about this hole I am in. 

Another possible trigger for me is when I get overwhelmed with all of the doctor's visits I need to catch up on and keeping up with refills on my prescriptions.  For someone who has issues remembering and understanding things, this can be a daunting task.  As is the norm for me, I put off appointments because I don't want to go through the process of coordinating transportation or asking my hubby to take time off from work to get these accomplished.  My Internist requires an office visit for every refill and this can get complicated especially when it is an important med like blood pressure, etc.  So I walk on the edge and let them get almost all out or completely out so that an appointment needs to be made right away.  UGH - I hate that.

Then it becomes like a game of dominoes - seriously.  OK - we are out of the BP and the thyroid is due too, oh and did you forget that you have been out of cholesterol for months....oops.  You already know you are not sleeping at night and then you can't get out of bed and the itching is getting worse and worse and Hubby is getting frustrated with you.  STOP......my brain is going to explode!

To top off these frustrations, I came across the article below which makes me want to light my hair on fire - OK maybe I am exaggerating but this is just what I have been experiencing.  Most Neuro doctors will diagnose you with a Somatization disorder because - guess what - you have pain in areas they deem to be all in your head.  Guess what - it is in our heads but not in the way this believe!!!
http://abcnews.go.com/Health/somatic-syndrome-disorder-mislabel-sick-mentally-ill/story?id=18606406

All right - I am done with this rant - I will go commiserate with my dog who appears to be in some what of a funk himself.  He gets it.  This too shall pass - I hope.

Are You Itching To Find Out.......

Am I the only one....surely not!  I am driving myself crazy.......ITCHING!!!!!  I keep thinking is it dry skin or just winter stuff, allergies, whatever, but the itching just does not make sense.  I buy special lotions and shampoos and I sleep with a back scratcher hanging right beside my bed because I wake up at all times of the night....you guessed it.....ITCHING!!!!  It is driving me nuts not to mention leaving scars and causing hair loss from my constant scratching.  I scratch to the point of drawing blood and I am constantly blotting up a spot of blood or treating scabs that are trying to heal.  My back looks like I had a bad run in with a tiger or a very angry cat!  I am truly not exaggerating here - my eyes itch, the inside of my nose, inside my ears, and my head wakes me up all night!  What the heck (not the word I had in my head but trying to keep this PG)!#$!%@))!@@#....

For the longest time I have thought it was just me and when I asked my doctor about it he just seemed frustrated again and gave me a prescription for a topical cream which of course did no good at all - none!!!  Well today I finally decided to look up itching and Fibromyalgia and light bulb.....it is part of the syndrome and like everything else it is sensory----not really topical at all.  Whew - that makes perfect sense to me and I don't feel quite as crazy......well I do but a little less.

The big problem now is that I haven't really found a good solution since my itching covers so much of my body.  If you have itching in one spot then cold packs can work wonders because they tend to numb the area.  As always I find Adrienne Dellwo has the best answers to some of our issues.  Itching is no exception and here is a wonderful article she wrote with some great solutions....http://chronicfatigue.about.com/b/2011/08/20/extreme-itch-in-fibromyalgia-chronic-fatigue-syndrome.htm.  She is the go to for no nonsense information and I can't believe I didn't look for this before.

I would love to hear if you have this problem or have any suggestions or solutions.  I am just ITCHING to find out more.....ok sorry but I couldn't resist.  We have to laugh right.....crying makes me ....ITCH?!!!

Can You See Me Now?......

Invisibility is part of our vocabulary and becomes an inescapable part of our lives once we have been diagnosed with certain types of chronic illnesses.  Have you ever sat in your doctor's office and felt you had melted into the furniture and weren't visible to anyone there.   I sure have and I don't much like it.  This is not another depressing whining blog entry I promise - so don't click away just yet.

I was reading a blog that I follow - Lil Blue Boo and I realized how guilty we all are of this.  What do we see all the time and don't really notice.  Ashley's blog entry was about an older man waiting at the same area in the hospital when she was awaiting a scan.  She realized he needed help and made an attempt to assist him but in the end was very sad at the realization that no one really noticed he was alone and needed help.

I truly am trying very hard to be alert and notice things like this but I am continually shocked at what I miss right in front of my eyes.  If we know first hand how hurtful and painful it is to be ignored and misunderstood then it only makes sense that we be the difference we want to see by trying to search out those in similar situations and actually do something - it doesn't have to be a big something.  Small ripples can make huge waves if we try and every positive thing we do for others makes the world a better place to live.  Like the three monkeys, I am going to try hard and put one hand over my complaining mouth and open my ears and eyes to others and maybe at the same time get my mind off of what is hurting and difficult in my own life.  It's worth a try. 

Can We Get A Respectable Disease Over Here.....Please....

Do you ever wish you had something else.....almost anything else other than an invisible illness that is suspect and misunderstood???  Well I sure do - every day.  I know that is counter productive and silly but it is the way that many of us feel!  I remember way back when I was first diagnosed with ME/CFS - I was relieved and I told a friend in a support group how thankful I was that it wasn't something else.  Then when Fibo was added and then Osteoarthritis and Paget's Disease and so on and so on, I realized that with these chronic illnesses we have the same quality of life as someone with MS or Parkinson's Disease.  But.....we are vilified, accused of being hypochondriacs and worse on a daily basis.  We fight for disability in a way that those with more respectable diseases don't have to.  No one wants to talk to us about how we feel or what is going on with us.  These conversations are avoided at all cost.

Please don't misunderstand - I don't want sympathy or anyone feeling sorry for me or my situation.  I don't want to drone on endlessly about my symptoms, I and most of us, just want to be understood.  We want to be treated in the same way a person with one of those understood believed in types of illnesses are.  I know this may sound petty to someone who is not traveling this path with us, but it makes our journey harder each day.

How many times have you been in a situation that someone asks about your health and you don't want to say what the actual problem is because you don't want to see that look on their face??    I believe all of this has come to the surface again for me because I am in the process of completing my SSDI Update Report and it brings back all of the memories and looks of disdain I experienced when first filing for disability income.  I worked 34 years of my life - many years after I was first diagnosed and fought to keep working way too long and therefore I will admit to being a little over sensitive about this topic.

I can't tell you the number of times I have read in reports that ME and Fibro alone can be as debilitating as MS or other neurological diseases.  When will this become a commonly understood fact??  I tell my husband that one day, long after I am gone, I hope there will be understanding for what we live with and people will say.....I can't believe how hard it was for those who came before us and were misunderstood..... 

Thank You Mr. President......

My post today may not be a popular one, but something I feel strongly about all the same.  A few years ago I wrote a post here which was an open letter to our President ~ President Barrack Obama.  It was a plea asking that our government look closely at the health care crisis and take action.  At that time I was caught between loop holes in the system and was unable to attain proper health care for my chronic illnesses.

Many may say that I am Pollyanna in my support and belief in our current President and I admit that may be just a little bit true.  But, I stand firm in my belief that President Barrack Obama is an extraordinary human being and we will look back on this time and realize that we were all witnessing faith, hope and love in action during this time in our lives.

Now you may say that a President has to be tough and cut throat to do his job - I don't believe this to be true.  I believe that a person who has the best interest of all people, all colors, all faiths, all man kind, will make the best decisions for us all.  For those of us who have been in the group known as the disenfranchised, we see through the politics and muck and myer and know that we are so very fortunate to be alive to see the actions of this man and those who support and work with him to do the right thing even when it is not the popular thing to do.

I would go a step further and guess that if Martin Luther King, Jr. were alive today, he would be so very proud of this man who blends the best of two races and is an enigma in our life time.  At the ripe old age of 56, never has there been a time in my life when I felt so very thankful and in awe as I watched the Presidential Inauguration with tears in my eyes and a very full heart. 

Imagine, what would happen if we all, even those who don't support our President or his party, gave up the negativity and tried, really tried to support non-political decisions and actions.  What if all political decision weren't based on money?? What if we worked to all get along and put all negative thoughts aside?  The possibilities are endless and we all will gain if we try and our children will be the beneficiaries of seeing true cooperation and love in action.  What if we reached out a hand to those weaker than ourselves and made the right decisions in our daily lives rather than the one most popular???

On this day of service, we can all think about what we can do to move ahead with positivity and love in action for Love is meaningless without action and action is nothing without Love!  This post is for those friends and family of mine who still fall between the cracks and continue to struggle to get adequate support and health care......Susanne, Julie, Lynda - I love you all and keep you in my prayers each and every day.   There are two many to name them all but know that those of us who can, will continue to beat the drum and fight the good fight.  May God Bless the POTUS and the FLOTUS as well as their family!

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!

Déjà vu ........

Many times in life we are given opportunities to get a glimpse of past events in such a way that we relive them - just a little.  Déjà vu (French pronunciation: [deʒa vy] ( listen), literally "already seen") is the experience of feeling sure that one has already witnessed or experienced a current situation, even though the exact circumstances of the prior encounter are uncertain and were perhaps imagined.  Last night I had such an experience and it was awesome - sort of!

Hubby and I attended a reception and banquet for the local Urban League.  Now if you know me at all, you know that I rarely leave home and surely don't attend functions like this any longer.  Okay - he talked me into it and he needed to go so I thought it would be a good night out for us.  The evening started with a reception at our Governor's Mansion - neither of us had been so it was very nice.  We met a most lovely young women serving drinks at the bar and she so impressed me with her poise and demeanor.  When I went back for my second diet coke, she remembered what I already had and asked if I would like another.  So refreshing!  When we were ready to leave, I had this impulse to thank her - I was not sure she would know what I was thanking her for, but just the same I felt compelled to do so.  I walked over to her in the hustle and bustle and she read my face and said Did you need something?    I put my hand out to shake hers and embraced it with my other hand and said thanks so much.  The surprise and wonderful smile that flashed across her face was the highlight of my evening.

I learned a long time ago that those who serve us in any capacity are angels in their own right and since I have not normally been the servee but the server, I feel strongly about appreciating those who do so with grace and kindness.  Back to my Déjà vu....in my old life I was a meeting planner and admin and the second leg of our evening was a reception and dinner at our city conference center.  Ah - as we walked into the center, I felt the old pangs of nervous energy and excitement.  Throughout the night I was mesmerized with the flow of the dinner and the hard work being done by the  hosting organization.  This is one of the few times that I have attended a dinner such as this and not had to worry about every detail and the behind the scenes effort.  So refreshing and sad at the same time.

Now I fully realize that I am no longer capable of doing a job like this, but it is so hard to let it go.  Thoughts cross my mind that I could and would and wish that I did.....but then reality walks back in when I try to extricate myself from my chair to make my way to the restroom or when the pain of sitting too long start to fill my consciousness rather than the program. 

As surely as the wind blows, the pain, discomfort and more welcome me in spades by the time I reach home and I had a very restless night of pain alternating with other issues.  It is then that I know that my dream of doing such work is long gone but......I still know in my heart that I am so fortunate to have once done it and to have a life left that is still worth living.  I could spend a good bit more time on the mourning of a life once lived or move back into my new world and make the most of it for what it is now.  That is what I chose to do - it is not always easy but it is doable and it makes the path easier if we don't dwell on the past - you cannot move forward if you are looking backward.  Chose life rather than the past.

When Your Faith is Stronger.....

This past week has been an unusual one for me - I am thankful that it is out of the norm that I have this type of week.  In the last few days, a friend I went to high school with passed away suddenly at 55; a friend that I used to work with lost his beloved 14 year old daughter; and an online creative friend who had had a miscarriage 3 months ago found out this week that she is now carrying a molar pregnancy - no baby and the cells were malignant and had spread to several of her organs.  She has since had an emergency hysterectomy and will have to begin chemo within the next few days.  She is the age of my older boys - just shocking!  A young local weather man lost his Grannie - a Grandmother he shared with each of us almost daily - we all felt we knew her too.  A young women that I know only through my reading about her, is experiencing much pain with one of her children and mental illness - the pain that only a parent can experience when their child is in pain.  While all of these events are unrelated, I am touched by each of them and I feel so much pain and empathy for each of these families. 

I realize that in the scheme of things within the universe, these events happen all the time and the world keeps turning and the sun still comes up every day.  This week has given me pause - a reason to look at things a little more clearly and to realize even more that time is limited, life is short, and we must make the most of every day.  I have spent a good bit of my life in limbo and not really appreciating that this is not the rehearsal and life is not infinite.  While most of us will never know how many hours or days we have, we must breath deeply and do our best to enjoy our life and live it to the fullest - to the best of our individual ability!   So---when, I am tempted to bemoan my own situation, I will remember these brave wonderful friends and their own crosses to bear and how well they have handled adversity and pain and aspire to be much like them - if only a little.

A Brain is a Sad Thing to Waste.....

My life has been a little upside down for the last few months - okay, it's always upside down but maybe a little side ways too.  ;o)  For those of us with chronic illness in our lives, sometimes it is hard to pull out a list of thank yous even though we try, because-----we know it could always be worse.  Today brought to mind that we do become complacent and take things for granted.  I am just as guilty of that and sometimes more so than most.  But - I am trying to learn to make myself more aware and I do believe it in turn helps my health and thereby the lives of those around me.  Truly - frame of mind - outlook - perception - these things can make all of the difference in our quality of life.

A few months back - in June - I was working on this very blog post.  We had had a very bad storm the night before and lost power.  We have a pump so that means no water, etc. as well as electricity and it was very hot!  It was out until about 10:30 that morning - not unusual - about 10 hours all together.  I woke early that morning probably because it was hot and I didn't sleep well.  As I finished the first paragraph of this post, I began to feel really bad and very sleepy.  So, I stretched out on the couch feeling very thankful that the power was back on and so very thankful for air conditioning.  A short while later I was awakened by the pounding and bouncing of my heart inside my chest.  What in the world - it was as if someone had connected power and was charging it up.  I sat up abruptly which made matters worse.

It was then that I realized that I was in A-fib again - just much worse than ever before.  What do I do now I am thinking.  The last time this happened I had just gone to bed and I waited it out for about an hour and when it didn't go away, we made the trek to the ER just to have it stop about 5 minutes after arriving.  Those of you who have had this will know - if they can't hear it then it is a waste of time.  So - this time I was determined to have it documented.  My son was playing an online video game in his room and I didn't want to alarm him.  I know that this is not going to kill me any time soon so I decide to walk to my neighbor's house - we have nurses living on each side of us.  It is approximately 100 feet or more between each house.  I decide to go for the mail first which is across the street from my house - thinking that maybe it would go away.  By the time I reach the mail box it feels as if someone is strangling me and I am getting shorter and shorter of breath.  So I try the first neighbor on the right - I feel I am about the pass out when I make it to her door - both cars are there and the garage door is open....but..no answer at either door.  Choking is getting worse - I am thinking I am going to drop right here in this heat and how long will it take for someone to find me.  Of course I am dressed like a bum and looking worse than a homeless person.

Miraculously I keep going and I make it to the neighbor on the right side.  I know they are home but no answer at first - what in the world.  Finally the nurse comes to the door - they had been out back and could not hear me knocking.  As soon as I tell her what is going on, her expression changes and she takes me inside and finally she can witness the bumpy crazy out of control heartbeat that I am experiencing.  Okay - if I die now I will feel better because my family will know that this is REAL!!!

Those of you who have chronic illnesses will understand this frustration - no matter what happens to me now it is excused because of the diagnosis I already have.  Long story short, my neighbor talks me into letting her call an ambulance so that treatment can begin right away.   They clocked the heartbeat at around 189 and confirmed it was in fact atrial-fibrillation.  Since this was at least the third time I knew this had happened I felt so vindicated!  After about 7 hours in the ER, they were able to convert my heart back to a regular rhythm and with a small amount of begging they allowed me to go home if I promised to see a cardiologist on Monday.

I met a wonderful cardiologist a few days later and he now has this under control with some changes in my medication and severely limiting caffeine intake.  That's a bummer but it is doable and after about 3 weeks of the new regimen I adjusted fairly well.

It has been a pretty busy year on the health front - I had testing for memory issues and speech problems as well as an updated MRI.  From that the conclusion is that I have cognitive impairment with no explanation as well as depression and anxiety - who didn't already know that???  I also had an MIR of the cervical spine and found that along with severe OA there is a bulging disk at C6 and C7 that is causing the little electrical responses and a whole lot of pain in all sorts of places.  Soon I will have an epidural for that and also the L4 and L5 issues and hope that can put off any thing more invasive for a while.  So along with the ME and Fibro, bad knees, carpel tunnel and severe OA in my right hand, and Padget's Disease in the tailbone, I am still considered to be doing good by my Internist - oh and lets not forget the high fat lipids, high blood pressure, high cholesterol, hiatal hernia, GERD as well as asthma and allergies.  Did I forget anything??

I don't mention this long diatribe (a term a family member used once) to bring attention to myself or because I am feeling sorry for myself.  It is because we all have to be aware of our health, our bodies and what is being done to safeguard our health!  We are not only our own best advocate, we are really our only advocate.  No one knows what goes on with you as well as you do and I am absolutely confounded when I visit my doctor's office and he really has no idea what is going on until I remind him again and again!  Now I understand he has lots of patients and people who are much worse off than me and I truly understand that people like me are very frustrating for him......but we still need care and undivided attention for the few minutes we are in front of them!  Don't accept any less - you are worth it!

Life is great and I appreciate every day that I am fortunate enough to have!  As I have said before, while I am not dying today or tomorrow - I, and all of those like me, still deserve health care and attention to our needs just like any other patient!