Hope N the Word

I don't speak a lot (publicly) about my pending divorce.  I will not drag my ex through the mud as so many others do.  It was 24 years of our lives and there were a lot of good times and I have plenty of great memories.  I will always love him, and I pray that he will be happy and blessed in his life.  Maybe someday we can show friendship to one another (that is my hope), right now the wound is too fresh and bleeding and I know that I have broken his heart; which was never my intention.  My heart is broken that I have lost people that have been my friends and family for 24 years - divorce should never include everyone.  I am divorcing my husband, not my family.  I am sad about this awful situation, but I understand their feelings.  He is hurting and he needs them.  Just like I am hurting and my friends and family are holding me up (physically and prayerfully). 

I have never understood the divorces where people feel they have to be mortal enemies for the rest of their lives.  That is just ridonculous to me - you are divorced now - STOP FIGHTING!  I refuse to have that situation in my life.  I refuse to hate anyone.  I refuse to fight - I am choosing to love.  My prayer is that one day, love and deep friendship will prevail.  Until the wound quits bleeding - I have to love from my side of the fence.

I said all of that, in order to share my devotional from March 13.  It was written by Kristen Armstrong (ex wife of Lance Armstrong), she wrote to "to help anyone find peace, hope direction, and forgiveness through life's hardships."  The book is called:  "Strength for the Climb:  A Daily Devotional."  The March 13th entry has been heavy on my thoughts and in my prayers.  It has made me understand that not only am I going through the biggest heartbreak of my life, but I also need to deal with the bonds of my illness.  I have prayed for strength and healing, but I have taken for granted that this is just my life.  Pre-Lupus, Fibromyalgia, Degenerative Arthritis and Bulging Discs ARE NOT my life!  They are what I have, but they are NOT what I am!  I must be free of the prison I have put myself in...

THE DOORLESS PRISON:  "Awake, awake, O Zion, clothe yourself with strength...Shake off your dust; rise up, sit enthroned, O Jerusalem.  Free yourself from the chains on your neck, O captive Daughter of Zion."  Isaiah 52:1-2

Wake up, my friend!  Shake off the layer of dusty disappointment and the cloud of despair.  God is calling you to rise up in strength and come find your seat by Him.  You are withering away in an open-door prison!

The chains around your neck are heavy and imposing, but they are not attached to anything.  Muster all the strength and courage you have and free yourself from bondage and captivity.

What is holding you here?

What lies have your believed about yourself?  What is it that you find so unforgiveable?  What wound do you have that just will not heal?  Ask God to meet you HERE, to heal you HERE.

Invite Him in, and He will come like a great tide and wash you free of dust.  He will bear the weight of the chains holding you down.  His light will shine brightly on the open door of your self-imposed cell.  Flee.  Be free.

Amen!  Right?  Open the door - walk out with your head held high, Oh sweet child of God.  He has a purpose for my life and he has a purpose for yours too.  He knows the reason that I endure this illness and He knows the reason I endure this heart ache.  He has a plan and I want to follow it.

"Arise, shine, for your light has come, and the glory of the Lord rises upon you."  Isaiah 60:1

This is the craziest set of diseases that I have heard of or felt.  New symptom - Now, I don't hardly sleep at all.  And I am still so tired!  One extreme to the other:  sleeping all the time and tired all the time or hardly sleeping at all and tired all the time.  What happened to the happy medium???

I go to bed because my body needs the rest, but my brain won't shut down and so I don't get sleep...when I finally drift off into slumber, it is short lived and I find myself WIDE AWAKE.  I turn on the radio, but the voices on the songs keep me awake, I change the channel to classical and my imagination kicks in.  I turn off the radio and listen to the silence.  I turn on the t.v., but the light on the screen keeps me awake.  I pray - and I find a million things to pray about.  I think about reading my Bible, but I have to turn on the light, so then I fall asleep reading and the light wakes me up.  So, I pet the dog.  I talk to God in my head and then I toss and turn.  Somewhere around 4 a.m. I finally fall into that deep sleep that I have chased all night.  6 a.m. - the dog starts nudging me to go outside.  Aaargh!

My hips have started to throb again - but I am getting pretty used to that.  I find myself being overly snappy - is it because I am tired?  because I am stressed?  because I hurt?  Or just all of the above?

I have been dealing with an awful lot of personal issues, but I thank God that He has shown me how strong I truly am.  I was trying to "just survive" before.  You know what?  That is NOT what God wants me or any of us to do!  God made me a promise and I intend to go after it with everything I have in me!  

I will ask myself everyday "what can I do today to avoid survival mode and stay in BLESSED mode?"

So - I ask you:  What can you do to stop just getting by and move toward the blessings that our Lord and Savior has promised you?

I have taken some time this week to clear my mind and enjoy some alone time, in the country.  It is so peaceful here. 

Rolling hills of brown, dead grass, leafless trees, evergreens and trails.  Blue skies from here to eternity.  I can hear myself think!  One of the horses wakes me up in the morning by kicking the metal trough outside the window - letting me know "it's time to eat."  When I open the front door to let the dogs out to potty, a parade of barking, wiggling weiner dogs and one mop dog, go bounding out into the yard.  Across from the porch are 5 horses, lined up at the fence, waiting for breakfast to be served. 

It's so cold outside and I welcome the warmth from the pot belly stove.  Surrounded by nature, the howling wind, horses, dogs and the hum of the electric heater.  Heavenly.

I hardly notice the constant throbbing of joint pain - I wish I could stay here forever.  I can't, but good thing I know the owners so well - because I plan to come back often, to reset my mind.

So - I got a letter from the Social Security Disability Appeals board last week end.  It says that there is no basis to appeal my trial.  That I am able to work a "basic" job.  My attorney wrote the appeal based on 700 mistakes that the judge made in his decision.  All I needed the appeals counsel to agree with was ONE!!!! (one of the major stand outs was that the judge said I am 5'7" - WRONG, I am 5'9"!) Jeez!

My attorney's office called last Monday and set up a phone appointment for me to talk directly to my attorney on friday at 4:00pm.  That day I got a letter from his office stating that I can appeal my case to the supreme court, but that he wouldn't do it and that he was closing my case, oh and that I didn't owe him any money.  Needless to say, he did NOT keep our phone appointment for 4:00!  

I just wanted the chance to tell him that I blame HIM for losing the case!  I hired a female attornefy from his office in January of 2011.  She had worked with me for 2 years.  A few months before my hearing she had brought me in and also spoke with me on the phone; we went over EVERYTHING that was going to happen in the courtroom and every question that she would ask me and every piece of evidence that she was going to submit.  She also informed me that there would be a job coach/professional at the hearing and that I wasn not to directly answer ANY of his questions, that I was only to answer questions posed by herself or the judge.  She said that the job professional might ask leading questions and that if I didn't use the correct wording it could mess up the whole case.

The morning of my hearing (mine was the first hearing on Tuesday morning, following Memorial Day week-end of 2013), I was sitting in the waiting room and a man walks up to me and says "Are you Shannon Leak?" I answered that I was and a he proceeded to tell me his name and that he was my attorney.  I said "um, no.  My attorney is a woman."  He then informed me that she had had to resign from the firm because of personal emergency and that she had handed my case over to him, two weeks prior and that her last day had been the previous friday (friday before Memorial Day week-end 2013).  He assured me that he had been fully briefed  on my case.  I felt uneasy, but thought "well, I am not an attorney, surely he must know what he is doing."  

I couldn't have been  more wrong.  He did not ask ANY of the questions that I had been prepared for.  When the job professional asked me questions, the attorney just sat there - I looked his way and he just looked at me like "why don't you  answer his question".  When the attorney did ask me questions, it was:  You say it takes you longer to do laundry - how many minutes does it take?  or Your doctor states that you cannot work full time -  how many hours can you work?  or  You say you have to take frequent naps and breaks - how many naps do you take and how many minutes do you need to take a break?  Come On!!!!  Really?  I don't time them!  He also asked a lot of questions about "what does your doctor say about this...?"  Hello?  That is hearsay and you should have subpeana'd him!

The judge only asked me one set of questions.  He read on my paperwork that one of the things I used to like to do was read.  He asked "It says here that you used to read.  What kind of things do you  like to read?  Why don't you read anymore?  Do you need glasses?"  I responded "I like to read history, especially native american history, biographies and civil war era novels.  No, I don't need glasses, I just had lasik eye surgery.  I can't read anymore, because my brain is so foggy that I have a hard time with reading comprehension."  Well, guess what that came out as in his decision?----claimant is of higher intelligence and education and is an avid reader.  (I just wonder what that court reporter was really doing behind that computer screen, she must have been watching soap operas or something because she sure didn't type WHAT I SAID!)

I blame that attorney because it was HIS job to ask for a CONTINUANCE!!!  All he had to do was explain the situation to the judge!  It wasn't my job to do or even know that I could have done that!

For the nay-sayers that are thinking "well, just get off you lazy butt and go to work.  You  must be fine the judge and appeals counsel said so."  I WOULD LOVE TO GO BACK TO WORK!  I have worked since I was 15 years old!  Just when I think "Oh I am feeling so much better and having a remission - I am going to get a job."  that is the exact moment when a flare rears its ugly head.  The last two fridays in a row, I have had major dizzy spells and the first one came along with blacked out vision and slurred speach.  WHERE AM I SUPPOSED TO GET A JOB THAT I CAN KEEP?

My mind works like lightning - one great flash and it's gone.

I am trying to deal with this sickness that transforms itself on a daily basis.  

If you don't have a copy of "Coping With Lupus" by Robert H. Phillips, Phd - I highly recommend it.  It documents symptoms, your emotions, description of feelings and has a chapter for your loved ones to read, so that they know how to handle their emotions about your illness and how to handle taking care of you.

I found this exert that I want to share:

Be Nice to Others:  "Sometimes one of the best ways to boost your own self-esteem is to be nice to other people.  The feeling of pleasure you get from helping others can be very gratifying an can improve the way you feel about yourself.

What are some of the things you can do to be nice to others?  You can help virtually any person in practically any aspect of his or her life, whether at home, work or play.  Visiting people in hospitals, nursing homes, and the like is one way to spread some sunshine.  Performing voluntary services in such organizations as churches, schools, and civic organizations is another possibility.

Helping others will make you feel better about yourself not only because you're performing a kind deed, but because you're doing something tangible to better cope with your disease.  Helping others with lupus can make a big difference in your life.  You'll feel more productive.  You'll feel like you belong and are an important member of society.  And, perhaps just as helpful, you'll find ways of reducing boredom and channeling any excess energy or tension."

This is my plan - I started this blog, months ago, to try to be an inspiration to others suffering from chronic conditions.  I kinda lost my way, but I have found it again.  I WILL be an inspiration to others!  I WILL NOT be a victim any longer.  I WILL get my "funny" back! 

This is the 2nd day of this 365 day chapter.  I invite you to take this journey that I have embarked upon.  Who is with me?

Hope all you lupies were able to have a very Merry Christmas.

I have been feeling so much better since I got my gall bladder out.  It's like I got a refill of energy.  Is this what a remission feels like?  Not sure, I just know I like it!  Not totally myself (yet), but I am liking what I am feeling.  I have had a horrible head ache for about 3 weeks, but I am getting used to it now.  Today have had a few dizzy spells, but other than that, things are fantastic (at least on the lupus/fibromyalgia front).  Dealing with some issues in my personal life and I am sure that has something to do with these symptoms, but I will make it through.

I am working on finding myself.  I want to be that woman that people look up to and admire.  I want my sense of humor back.  I used to be quite the comedian - I will find it again.  Working on renewing my faith.  Basically I am just renewing my mind.  Oh yeah - I am also rebuilding my physical self - 64 lbs down and only 109 to go!  Whoot whoot!  I will do it!!!

"You must take personal responsibility.  You cannot change the circumstances, the seasons, the wind, but you can change yourself.  That is something you have charge of."  - Jim Rohn

I am working on that quote.  I cannot control my illness, other people or other situations.  I can control how I feel (mentally), how I react and what battles matter and which don't, I can control what situations I choose to be in.  I am learning about setting boundaries.  If you don't respect me, you should at least "pretend" you do when you are with me, otherwise I don't have to be around you.  I am tearing down walls that I have spent years building and I am putting up walls where I should have put them years ago.  This is going to be quite an adventure.  I realize I have set some pretty high goals for myself.  There will be highs and lows, but I am  looking forward to this new me.

"I really think that tossing and turning all night should be considered exercise."

 Undifferentiated Connective Tissue Disease:  this is my "new" diagnosis.  My new doctor at OU Medical Clinic, explained it to me.  He said that since my Double Stranded DNA test keeps coming back inconclusive, he cannot say that I have SLE (at least on paper).  He said that he will refer me to the rhuematologist for my arthritis in my hips and ankles and it will be up to him to make a firm diagnosis.  I do feel better, now that someone has FINALLY explained all of this to me.  It has been very confusing, being told "you have lupus" by 4 doctors and a nurse practitioner and then being told "I think doctor's are to quick to diagnose lupus and I don't know what is wrong with you.  You have exceeded the limits of my education."  My head has been spinning for months! 

I thank God that I finally knocked on the right door and it opened to a year long scholarship to OU Specialty Medical Clinic and that includes the rhuematologist in OKC!!!  Prayer works!  Thank you to EVERYONE that has been praying about my medical coverage issues!

I have to see my new doctor 3 times before he can give me the referral to the clinic in OKC.  He has already sent me to the pulmonologist and they are working on getting me in for a sleep study for my sleep apnea.  I didn't qualify for the first scholarship that they applied for (regarding the sleep study), but the nurse says there are other avenues.  So, the fight isn't over, but I have renewed strength to fight for it.

We must fight everyday for something and I feel that with my team of prayer partners - anything is possible.

This disease affects not only our "physical" selves - it is also very debilitating to how we view ourselves.  The pain, fatigue and frustration leads to isolation.  Isolation leads to depression.  Depression leads to more symptoms and flares.  It is a vicious circle; a merry-go-round without a stopping point.  

If you don't have supportive family or friends to surround yourself with, you should find a lupus or chronic pain support group in your area.  If there isn't one - start one!  A good place to start looking is on the Lupus Foundation of America or www.mollysfund.org websites.  It is IMPERATIVE that you find support!

I often find myself slipping into a very dark and scarey place within my mind.  I hurt so badly, I feel alone, I am scared.  There have been times that I have slipped off into that abyss and nearly lost my faith.  Thankfully, I have been strong enough to pull from what little I have, and I say "Satan!  You are a liar!  God has a plan for my life and I will not bow to YOU!" 

This sickness is horrific - but you are NOT ALONE!  God has a plan for your life too!

I came across this article on the Molly's Fund website and I thought it would be helpful for those of you that find yourselves going into the abyss...  

Coping With Lupus: How Does Lupus Affect Your State of Mind?

Whether you have been recently diagnosed with lupus or have been living with it for many years,learning to cope with a debilitating disease is not an easy task. The ways in which this disease can physically and emotionally affect a person varies widely from patient to patient. One element that is consistent when coping with a chronic illness, like lupus, is the undeniable toll that it takes on the mind and body.

There are many challenging feelings that will be faced and it is important to know that all of them are normal. Power to cope comes from gaining the understanding of where feelings of frustration are stemming from so you are better able to develop techniques for coping. With the right tools, support and education, you can ultimately lead a positive and productive life with lupus.

Some of the Challenges You May Face While Coping with Lupus

• Visible effects of lupus and the ramifications from treatment
• Physical symptoms such as pain and fatigue
• Depression
• Feeling socially isolated
• Difficulty with family and other personal relationships
• Concerns about the future
• Cognitive dysfunction (known as “lupus fog”)
• Moodiness and/or changes in personality

Things You Can Do to Help Yourself

Having the tools to help yourself cope with these issues and others that arise, is vital to your well being. Some suggestions for ways to do this are as listed to the right:

• Get regular exercise
• Quit smoking
• Get enough rest
• Avoid the sun and even indoor fluorescent lighting
• Ward off infections
• Manage pain
• Manage mental well-being
• Surround yourself with supportive people
• See a mental health specialist when and if needed

 Things to Note

It is important to allow yourself to accept the feelings and emotions that you may be experiencing and acknowledge that you have good reason to feel this way. But know, too, that even though you may feel powerless, you do still have power. Living and coping with lupus or any other chronic illness can be difficult, but by learning proper techniques and tools for coping, your life with lupus can still be positive and productive.

I was just perusing Pinterest and ran across a great quote (tried to upload it, but it came out too small to read).  Anyway it said "I have an autoimmune disease, that means I can totally kick my own butt!  But I look fabulous doing it."  

I can relate.  So true, so true.  I was busy kicking my own butt last Thursday.  I spent the afternoon, evening, night and the following morning flopping from side to side, sitting, laying down, moaning, crying, cussing, praying - I absolutely could not get comfortable or get the pain to just stop!!!  It was horrible.

Now that I have made it through, yet another day of misery - It felt awesome to read that quote and laugh out loud.  I just needed to share it with all my fellow lupies (and all you other autoimmune disease sufferers).

If you are having a "kick your own butt", type of day - take a minute to find something to laugh at.  I promise you will feel better, even if it is only for a moment.

I don't feel good at all and I am so sick of it!  I am swollen, my joints are killing me AND I have these blisters on the back of my neck, upper back, my ear and nose!  I thought I was getting zits when they showed up on Friday, but now they burn like blisters!  Really?  Why?

Can't I have ONE MONTH?????? Or even a solid week!  

I am stressed out to the max and I know that isn't making things any better.  I hear and read all these stories about "just eliminate stress from your life" SURE THING!  How in the world do you do it?  I am so sick of being told "you must like drama, because it is always going on in your life." SHUT UP - that's what I have to say about that.  I do NOT like it and I do NOT start it - it just seems to land in my lap!  NOW, could you offer some "helpful"advice and keep your crappy opinion to yourself; because, honestly - your crappy drama comments just adds to my stress.

I realize that stress makes everyone sick and causes strokes and heart attacks.  I can only express how it affects me.  Drama happens and I slowly get physically, mentally and emotionally sicker and sicker and pretty soon I am flat on my back and can't think straight.  Make it stop!  Please, please, please STOP!!! 

I just want to live my life, I am plenty sick enough on my own.  If you want me to be sick, you don't have to stress me out - just stand back and watch - I will be sick on my own!

I don't even know what to do - I just want to live my life as pain free as possible.  If you don't like me, don't start drama - just stay away from me.  Is that so hard?  Just stay away.

"Just because I am strong enough to handle the pain, doesn't mean I deserve it.  This is not a choice, it's a disease."

"My soul weeps because of grief; strengthen me according to your Word."  Psalms 119:28