January 1,2014 Renew

As the new year begins, as promised dear reader, I begin my journey into regaining my self worth through photography.   I spent a lot of time, when I wasn't napping, deciding what my first photograph for my Project365 2014 would be.   I chose the following photograph because I am hopeful that 2014 will be the light that lifts me out of the darkness 2013.   I hope you enjoy "Renew"! 

As always should you choose to share anything from my blog, be sure to give credit where due as I do not give up any copyrights by sharing it here.   

Goodbye & Good Riddance 2013!

Moving on from 2013 is not going to be very difficult.  Looking back over the year I can pick out a few gems in a mountain of dung.  My high school reunion was a high point due to some very special people who are close to my heart. A good friend got married this year to the love of her life and their joy makes me happy.  My boys got their GED's this year!  My daughter was inducted into the National Honor Society & got her drivers license! Greg has been amazingly supportive when he could have understandingly run for the hills.

But 2013 took more than it gave unfortunately.  I was diagnosed with Fibromyalgia & the disease has made me have to redefine not only my life but also myself.  I am no longer the person I was a year ago.  I can no longer work.  It overshadows everything I do and there isn't one time that my actions are limited by my disease.  I can't even do my own grocery shopping anymore.    I've spent the majority of my life overcoming obstacles and keeping things positive. I've spent the majority of my life asserting my independence and doing everything I had to do to provide for y children.  This disease has become my greatest challenge.  I'm looking forward to 2014 with cautious hope.  I am going to find the new me!  Hopefully I will be able to find my optimism again. I'm going to find a way to shake this funk off.  I pray that they at least find a better medication for this disease if not a cure.  I pray I find some relief this year.

 No matter how good or bad this year has been; I wish you a better year in 2014. I wish love and kindness upon you and yours.   I wish you all a very Happy New Year!

Life will be what I make of it

Just a quick note:  Always hit save before closing an app!  

As you may have noticed, I have been struggling lately to find myself.    I feel as though my disease has taken everything away that constitutes me.   I have been independent to some extent for as long as I can remember . 

I was telling a friend of mine about Head Start yesterday.   For those of you who are unfamiliar, Head Start is a preschool for the financially challenged.  The goal is to instill in very young children that they can take care of themselves (like set up a luncheon for their parents, serve the juice and cookies and clean up after themselves).   If the program still works in the same manner as it did all those years ago.......in a galaxy far away....then it is extremely successful.   I have done everything in my power to be independent my entire life.   

Well all that has changed.   I must depend on others to take care of me and mine since I am unable to do so myself.   This has set me into a complete identity crisis.  

Truthfully, I have found myself in tears several times a day for the last few weeks. The good news is that I recognize the problem and have been looking for a solution.  

Bare with me now....I have to take u the round about way there...... 

My car broke down recently.   In the course of waiting for it to be repaired, the battery in my phone started to die; This resulted in me borrowing power from the local AT&T.   While waiting for my phone to charge, I futzed around with an IPAD.   I found an app that looked interesting on it.   So later, I looked for the app and found one called Newsify.   Well, this app lead me to an interesting article called Project 365.

It can be any number of things but in this case they were discussing photography.  It's a commitment to yourself and in some cases, to the public that you will take a picture once a day for a year.   

I have decided that this is the first step for me in the right direction to help me find my worth again. 

So dear friends, family and random reader, I commit to my Project 365 beginning January 1, 2014 (the year my baby graduates high school).   Not only will I take 1 photo per day but I will share 1 photo per day.   I may write a small note about the picture, a large post or a poem along with it......but no matter how good or bad, I will share 1 photo a day.  

I hope you are excited as I am.   Here is a little preview to wet your whistle:   

                    Weekend Storm

What a difference a visit makes .......

I had an old friend stop in for a visit all the way from GA!  We sat and talked for hours.  Even though I didn't completely forget about my pain....It was placed on the back burner as we reminisced and talked and talked and talked some more.   Kids,  men, kids, boys, kids, friends, health, respect, faith, friendship, love.....Nothing in the world can beat a true friendship.  Nothing in the world can beat a visit from a friend.

I'm so blessed to have such wonderful people in my life.  It helps to reflect upon the good things in our lives and it's great to spend time with a friend.  I know I keep saying it but the truth is that I get pretty lonely sometimes and this visit means the world to me :)

Now as promised, a discussion on disability.   You would think that, if a person was to become permanently disabled,  the process to receive disability would be pretty simple so that those who need the help can get the help.  No...it's just like any other government run agency.   You have to fill out loads of forms and subject yourself to a complete evaluation on the limitations that have presented themselves to your lives.   It is a difficult process emotionally because it completely reminds you of all the things that you can no longer do and what you can no longer achieve.   They also may ask that you see one of their doctors...either the psychologist or a general physician or both.  I got the psychologist(which I never even saw a copy of the report....apparently you don't get to see that until a later point in the process)

Then after all of that, right off the bat(which means 6 months down the road), you are denied. The letter informing you of your denial is worded carefully....it states that they are not saying that they believe that I can return to my previous job but there must be something out there that I can do though they do not know specifically what that is.  They state that they are not claiming that I do not have the issues I do....but I could be worse.  It's truly a ridiculous letter designed to cover their tushes while hiding the real reason for the denial.  My age.

That's right, if you are under 55, apparently according to the government, you can't possibly be disabled.   So they deny you upon your first request.

At that point, you appeal their decision.  Then you fill out all the forms again reminding yourself of all the things you can't do.  But I think this is the important part, they request records from your physician.  Yeah...not until the appeals process....I find it strange that they can deny your claim without having those records but that's the truth of the matter.  I have been told that at this point(where I am now) only 20% are approved.   I'm hoping and praying that I am part of that 20%, though everyone has told me that I shouldn't expect it ....once again because of my age.   I would think that since they have my medical records now, it should be simple.  My doctor (a highly respected physician) has made it absolutely clear ,both to me as well as in the medical records, that I am permanently disabled.  He has been blunt with me because the truth of the matter is that I would trade almost anything in this world to be healthy again....even partially...enough to support myself and my family again.

Now I have been informed that if I am denied at this point, the next step is a court hearing.  There is a possibility that I wouldn't even have to physically attend the meeting seeing as, depending how far away it is, driving makes my pain worse.  Now here's the kicker, if I have to go to the hearing portion of the appeals, the courts are backed up.  The shortest amount of time I should expect before a hearing can be scheduled is currently a year....could be as long as 2 years.  We are talking after the first 9 months of the process.

So since my temporary disability is no longer in effect, I have been told to expect that I will have absolutely no money for at least a year and an a half.   That's the minimum amount of time.....and it's mainly in my case because of my AGE!    Its not because I'm not disabled....I have documented proof that I am.    It's because of my age and it truly is sad.

There has to be a better way to weed out fraud while caring for the people who truly do need the help.    You are entitled to it if you qualify based on your previous work experience.  If you contributed to the system for the correct number of years, you are entitled to receive a disability payment should u become disabled.  But the system appears to be so delayed that it is damaged...maybe even broken.   No one who is familiar with my case and with the system have any doubt that I will eventually be approved.  When I am approved, I will receive a payment that goes back to when I initially filed when I stopped working.  So...there isn't any savings for the government.   It's similar to an insurance claim., they will delay payment and deny payment in the hopes that you will give up and then they don't have to pay.  It's really despicable that even though they have all the proof they need that I am permanently disabled, that they still hope that it just becomes too much for me to handle and I give up.                                                                                                        
Well, I will not be giving up because unfortunately I don't have a choice....I"m permanently disabled.  

Chris Angel's Neck

I was sitting here watching tv(my second largest pastime since becoming disabled.   I saw a commercial for Chris Angel's newest stunt.  If you don't know who he is, he is a magician known for his over the top tricks. Some would compare him to a modern day Houdini.

Well, his most recent trick entails being placed in 2 straight jackets, hung upside down and have a 50 lb weight(or a rope that weighs 50 lbs (it wasn't really clear which).  All I could think was why in the world would anyone put themselves in a position to hurt their spine.   Maybe if they knew what my daily life is like, they would be more careful so as not to jeopardize their quality of life.

I know I haven't checked in lately.  I was under the impression that I was doing a good impression of a person handling all the latest stresses well.    You should see it, my impression, it's really pretty damn great. ......Except then I realized some little things. For example, I haven't been on here a while, I haven't spent any quality time with friends and family(couldn't bear the thought of picking up the phone even), had a hard time when people did call sometimes, I shower every other day and since my clothes are too tight on me  because I have gained alot of weight due to medication and lack of activity, I don't have any money at all coming in since my temporary disability has run out and my permanent is in appeals(if denied, could take another year before I get a hearing to have it approved...(.more on this will follow.) ).......  

Truth is the pain has been getting worse as we transition into winter.  I am in constant pain and occasionally will have a wave of fresh and stronger pain shoot through my body.  I'm cranky.  I'm tired. I'm sad.


So who in their right mind would jeopardize their life in a deliberate way that could end up like me?   Ok so you say your not in your right mind....or that the money is worth it.....trust me...it's not.....This is a horrible disease.    Well enough on ranting on Chris Angel.....I promise my next post will at least be an attempt at being more productive....Keep your eyes open for a frank conversation about the disability system.   (I know exciting right? )


Toodles for now

Dear Reader

Please forgive my absence.  It isn't that I didn't have anything to say. I think it's because I've had too much to say. Every once in awhile, it's all just too much and you need to take however long you need, in order to move forward.

I guess I should update you first. I went to the neurosurgeon to evaluate the tumor. He was able to discern the tumor on the MRI from a year and 1/2 ago. He was able to measure it and it is the same size as now. After reviewing my symptoms and my films, he made it perfectly clear that the tumor is in absolutely no way the cause of my fibromyalgia. Based upon the previous MRI Versus the current CT scan, the course of treatment is to watch it. If it grows, it would be a cause to remove it but at this time it is not recommended.

I had a tough time after that visit.  This is what I wrote a little over a week ago on my patientslikeme account.
"Since then, I have had to completely readjust.  As this disease has taken my life away in a slow steady pace, I had time to process each loss along the way slowly rather than the position I am in now.  I had hope for the first time.   That hope has been completely removed.  It's clear to myself and my doctors that I am disabled.  So much so that I truly am never expected to return to work.  I've lost my worth a little bit.  Not that I'm truly worth less.....but it feels that way lately.   And yes I purposely separated worth and less...because I'm not worthless....I feel worth     less.    And it's been hard to handle this time.  I'm trying to get back to good but it's going to take a little while.

I've also recognized recently that my doctor was correct when he had reported to me that a majority of fibro patients report a lessening of their condition in the summer.   Fact is I had  less "very bad" days during the summer.  Also, recently I have felt a significant worsening of the symptoms in the last week or so as the weather has been changing.  It's beautiful but I'm quickly going back to being unable to move prior to noon regardless of what time I went to sleep.  I'm sleeping about 12 hours a day the last 2 days. Getting up in the morning has also been excruciating."

All that being said, I actively made a choice to pull myself out of the slump.  I'm not saying that I am 100% fine because then I would be completely bullshitting both of us.  Truth be told though, I'm doing a bit better than I was when I wrote that entry. I took the dog for a walk last week.  10 mins and I needed to rest but at least I did it.  Then on Thursday, I was able to get up early enough to make it to my water aerobics class that I  haven't been to since the spring.  Granted, I ended up being knocked on my @ss for the rest of the day but that's how these things go.  I've had some bad days lately but I've also had moments with my family that I can hold close and keeps me going.  One step at a time is the only way to walk....so that's how I'm trying to take it.

If I haven't explained what "patientslikeme" is , here goes.  www.patientslikeme.com   An extremely helpful website that allows you to track your disease(s), your symptoms, your mood, your treatment so that you and hopefully your doctor can look and compare to see what is working for you and what isn't.  It also acts as a support group because you can interact with other people who share the same disease as you.  Additionally, you can look to see what's working for other people and look into clinical trials in your area.  I can't speak highly enough of this site.  It gives you what you put into it results wise.  Additionally, I bring a printout when I go to see my doctor that let's the doctor see how I have been doing since seeing him last.  He loves it!

Be Warned: Religious Opinion Enclosed.

Remember to tell the kids this......Every once in a while, watch a black and white movie.  They had to act back then....actually put on a show.  There was a really great story....similar to a book on the screen...There's nothing like it.  There are so many special effects today that are really fantastic and enjoyable....because of that, you can get away, for the most part, with having mediocre acting.  It wasn't like that back then.  So every once in a while, watch a black and white movie.  

These are the conversations I find myself having with myself.   Reminding myself to "tell the kids this:".

I'm going to do what no normal person would do publicly....I"m going to talk about my religious/spiritual beliefs.   Then again, I'm not normal.  I have a brain tumor.  I am finding that it can give me the right to do things most normal people would never do...I need to be very careful with this new power. I like to remind myself to use my powers(whatever they may be) for good....always for good.  Always try to choose the "right" thing...the morally good choice.  I'm human so as we all know it's extremely difficult.  That's why we have Saints.....because we can't believe that a human being can be THAT good.  I digress.....

For my whole life, I have believed in God.  It's never been a ? of is there or isn't there.  As a child, I felt an extremely strong pull to do the right thing(and NO, the end of this story is not that I am in any way, shape or form a Saint).  Whenever I did something that felt "wrong", I felt an extreme amount of guilt about it.  Even if it was just a small thing like not speaking up when someone said an unkind word to another person.

 As I got older, I was introduced to the church.  I was Christened Presbyterian.  But eventually, I moved and didn't get a ride to that church and stopped going.  From there, I didn't go to Church for many years.  Now, that doesn't mean that I didn't believe in God by any means.  During that period, I just didn't go to church.  

Then I left my abusive ex-husband.   Once I got settled into my new town, I went to church.  A Presbyterian church,  I remembered all the songs that I had sung in the choir and at church camp.  I remembered the warm feeling of safety and community.  I was so happy to be there again.  And then the pastor spoke.

Logically, I was able to listen to the sermon and understand what the pastor was trying to say.  Objectively, he meant no harm whatsoever.  Emotionally, I was absolutely destroyed.  The pastor was speaking about marriage.  And how the Bible says that the husband should provide for and protect the family while the wife should trust in her husband and listen to what he says.  I heard how the Pastor's words would be twisted and manipulated by an abusive man to keep a woman from believing in her own worth.  I couldn't stay.  I wasn't strong enough yet to speak with the Pastor so that he could learn how to be careful with his wording so as not to support an abusive man's behavior.  I never went back.

Years later, I started going to a Catholic church looking for that sense of safety and community.  I went for about 6 months when I learned just how much the people in the church loved to gossip and spread falsehoods about people for no other reason than they enjoyed the drama.  In short, they weren't behaving very Christian-like.

I know that my opinion on this subject is different than many other people's opinions including my own mother's opinion.  But if you notice the word that I used....it's opinion.  That's all it is...no more and no less.  I can not speak to know who God is, which God is the "right" God or even if God truly exists.  I can only speak to how I feel and no one else.

I do believe that we are all part of God....every single living "creature"...including plants and animals.  I believe that when we die, it is our soul returning to God.  I think "hell" is our own individual realization of what we did here in this life. This is as far as I've thought of it but it feels right.  That's as far as I've ever needed to think of it.

In other words, live your life the best that you can. Do your best to treat every living thing with kindness & respect.  Do your best to minimize the amount of harm that you do in life. Treat other's how you would want to be treated because in the end it doesn't matter what they have done to you.....it matters how you reacted to it.  They have their own "judgement day" where they will have to face all the things that they did in this life...it's not my place.

I don't believe that your sexual orientation has anything to do with God or hell or heaven.  No matter who you are in a relationship with, you choose to treat your partner right or treat them poorly....and that's the important part.

God doesn't go around giving out diseases nor does he usually go around taking them away (I can't discount miracles....those are all God..but they are extremely rare).  I don't believe that praying for what we want will get it for us.  I believe that God is too busy helping those who truly need it to waste time doing things we should be doing.  He's not going to give you that new job, you need to go out with a positive attitude and work hard to get it.  He's busy guiding the hand of a doctor of a child in heart surgery to worry about most of our small issues.  It's not that I don't believe that prayer helps.....it's that I think we need to keep our prayers for the big issues.

I am thankful for this life.  I don't want it to end any time soon.  But I also have come to believe that God has a sense of humor much bigger than any of us can even imagine.  I don't think she's cruel.

But the truth is:
I planned to go to college.....
I planned to get a degree to teach or be a nurse....
I planned to wait to get married until I had my career set......
I planned to then get married and have children and a house with a white picket fence....
I planned to raise my children with my husband & their father.....
I planned to always be healthy.....
I planned to be in love forever.........
I planned to grow old as a beloved teacher and retire ......
I planned to live in happiness & good health until I died in my sleep.....

God had plans of her/his own........
And I've gotten used to just going along for the ride knowing that....
Even when everything isn't alright, it will be in the end.

So, I have a brain tumor and no matter what happens tomorrow....I know everything will be alright.