My Gamble

I read The Headmaster’s Wager as a member of the From Left to Write book club.  I was given a free copy of this book.  This post is inspired by the book.  

Welcome to all of my fellow book club members or anyone coming here for the first time!  I am a chronically ill mom married to a chronically ill man and we are raising our six-year-old son, who also has some special needs.  My blog focuses on the challenges parents with chronic illness face, but also speaks about being a mom and a woman in general. 

In The Headmaster’s Wager by Vincent Lam, Headmaster Percivial Chen is a proud Chinese born man who runs an English language school during the cusp of the Vietnam War.  In his refusal to accept his adopted country’s turbulent times, his gamble becomes a life changer.

Right now, due to our chronic illnesses and my three year fight for Social Security Disability, my family is bankrupt and technically homeless.  It WILL get better, because I have been approved for disability.  The problem we are having is WHEN?  Social Security operates at a snail’s pace as it is and my lawyer also tells me that because they owe me going back to September of 2008, the initial payout is very high and three people will need to sign off on it. The way it stands right now is my local office told me that if I have not heard back from them in 30-45 days, to call them.  What this means to me is that they will do nothing on my case until I call them at the 30 day mark, and then have 15 more days to still do nothing with my case.  It is ironic that in a few months we will have a large lump sum payment (which only amounts to about a year’s salary for me) and my disability income.  I think we will be able to live on our combined disability incomes but it will always be a struggle.  It will at least allow us to be able to afford our own apartment after being homeless since March.  But for now, making my husband’s monthly disability income last is a race against time.

The following is an example of a typical month for us, it was from October to November.  My husband just got paid today.

Grant got paid on October 15th.  Immediately we must pay the car insurance bill, over $350.00, a huge dent.  We realize that this is going to be another tough month.  We pay our cell phone bills, our only phones, and Grant must pay one of his doctors who has agreed that he will accept $50 from him whenever he can spare it.  

We want to take Tyler to a Halloween party in our Cleveland suburb.  It’s is $15  for the three of us, should we do it?  We decide we will.  

Having arrived in Ohio at the end of September, two weeks later I get a traffic ticket.  I realize the driving laws are vastly different from New Jersey and now I am looking at a $155.00 speeding ticket plus court costs.  I go to court in front of a judge and tell her that paying her city $245.00 right now would be an extreme hardship to my family.  It takes me more than a week to finally work out a payment plan that my family can possibly pay, although even this will still be difficult.

We start putting only $10 of gas into the car at a time.  But I must drive in to Cleveland three times a week for my doctors’ appointments and we have to fill up every few days.

Grant decides to cancel his doctor’s appointment, believing that currently I am the sicker of the two of us.

I pray that it doesn’t snow until after November 14th as coming from New Jersey we are not at all ready for the harsh Cleveland winter.  Tyler needs boots, snowpants, pants other than jeans, and hoodies.  I do not own boots and need more sweaters.  I take back the sweaters that I had bought earlier in the month that are too big for me and instead of exchanging them I return them for the money.  

I make the decision not to pick up a prescription, thinking that I can go a little longer without it.

I begin going to the grocery store every two days, picking up the absolute essentials and replacing anything only when it has completely run out.  Tyler eats eight to nine times a day and the pediatrician says he must.

The first week in November, I text a dear friend whom I have met through this blog and ask if she can lend me $50.00.  Tyler is off two days next week and will not be getting the free lunch that he gets in school.  He will have a three day weekend.  We want to take him somewhere during the three days and we wrack our brains trying to find something that is free other than parks and playgrounds, which he frequents.  The Cleveland Museum of Art  is free but it costs six dollars to park plus the gas and we decide against it. We take Tyler to the North Chagrin Reservation where he can learn about nature and see animals for free.

Our ten year anniversary on November 9th comes and goes, with no cards, gifts, dinner out, etc.  We tell each other we will have our ten year anniversary when I get my disability.

I look at my Sponsored Tweets account and see that it has $21.96.  Do I cash it out with a withdrawal penalty, in the end meaning I will have less money?  I decide to wait until we are absolutely desperate. 

This weekend I uploaded six pictures to Walgreen’s for a project Tyler needs for school. They will cost a dollar and change.  I realize that it is too risky to pick them up.

We finish the pay period with six dollars.  Not just in our wallets, but to our names.  We started anew today.  But Christmas is nearly upon us and we have to get gifts for Tyler.  We desperately need winter clothes, because the odds are we will have a tremendous snowfall soon.  Another tough month is ahead for us.

And so I am left to gamble again.

 


 

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I Went to the Cleveland Clinic’s E.R. and All I Got Was Slipper Socks

We had a wonderful Halloween, delayed a couple of days due to Hurricane Sandy.  For the first time since Tyler has been trick-or-treating I was well enough to walk with him, after either being pushed by Grant in a wheelchair when he went trick-or-treating in the Freehold Raceway Mall when we lived in New Jersey, or just driving along while he and Grant went door to door.  I barely felt the cold or my pain as we walked for nearly two hours.

I felt okay on Saturday, and on Sunday we took Tyler to the North Chagrin Reservation park and that is when the Myofascial Pain in my calves really hit.  I came home and tried a heating pad.

On Monday the pain was worse.  I kept it to myself and continued to do the household necessities but all day the pain was increasing and slowly making me manic, probably because I was internalizing it so much.

On Monday night, when I thought I would soon start screaming from the pain, I asked Grant to take me to the hospital.  Because I have felt relatively pain free for so many months I have no more pain medication.  I am uninsured until I receive my Social Security Disability Insurance, and so I have health care through a free clinic organization.  But because so many of the people that go to the free clinic are alcoholics and drug addicts they do not write pain prescriptions for anyone.  My doctor told me that his hands were tied and that I should go to the emergency room if my pain got unbearable.

And so I went to the emergency room of one of the satellite locations of the highly regarded Cleveland Clinic.  When we got there at 6:45 p.m.it was extremely busy.  I had brought my medical records along to prove to them that I had the diagnoses I claim to have so that they would believe me and give me pain medication.  I was having pain from the Myofascial Pain, Lupus and Interstitial Cystitis.  At that point I could barely stand or walk.

I had the initial check-in, I told the woman that I was here because of pain.  “Where  is your pain?”, she asked.  “It is diffuse”, I told her.  “Well, tell me where.” “My calves, my feet, my hands, my bladder, do you want me to keep going?  I mean, the only place that doesn’t hurt is my face.  The pain is from my Lupus, Interstitial Cystitis and Myofascial Pain Syndrome.”

She told me to have a seat and I would be called in to have my vital signs taken, tell the nurse what was going on, etc.  As I waited the pain started to get very bad.  The only way I could get comfortable in any way was to take another chair and put my legs on the armrests, my legs spread wide open.  The Myofascial pain was affecting me in a way similar to labor.  When my muscles would contract I would peak to a pain level of 10, and I would scream with tears streaming down my face, and then the contraction would subside and my pain level would be about an 8.

I got called by the nurse and I could barely communicate to her through my screams and cries.  She ran out of the room and came back and said that I would be the next one to have a bed, but to go back to the waiting room.  That was 7:15 p.m.

I continued to scream, cry and beg for someone to help me.  There was another woman there in a wheelchair, in pain and screaming as well.  She had been there when I got there and was saying things like, “It hurts so much, I have been waiting so long!”, and the person she was with kept trying to calm her down.  Her cries upset and scared me as I wondered why no one was taking her back to a bed.  The other patients, other than a woman who was drunk, were quiet, working on their laptops, talking on their cell phones or reading or watching television.

I waited for my bed and the contractions were almost constant.  With my legs spread and my contractions, I wondered if people were thinking that I was having a baby in the waiting room.  And I wascompletely embarrassedthat I looked like that but I could not help it!

A few times, four to be exact, Grant approached the front desk and begged them to help me.  He said that not only was I in great pain but that I was also mentally ill and he feared this stress would break me.  I felt so badly for him because he was watching me writhe and he was absolutely powerless to help me.  They told him they had a triage system.  This begged the question, “There are only two people screaming in your waiting room and you keep taking the other people so what is your method of triage?” When he came up a fourth time the man at the front desk said, “Sir, I am sorry but I am going to have to ask you to wait outside of the waiting room because you are interfering with patient care.”

Aren’t I a patient?  Where is my care?!?!?!

Eventually the other screaming woman got taken back.

Finally Grant just went home, I mean if he could no longer be with me to hold my hand and to try to soothe me, what was the point?  He told me to ask for a patient advocate, because at this point I was going up to them saying:

“What is your method of triage, I am the only one screaming in this waiting room.”

“Ma’am, there are many people being brought in by ambulance.”

“That’s fine but what is your method of triage for the waiting room because I am the only one here that is screaming!!!”

The patient advocate came and while very nice, she still could not explain to me their method of triage.  I asked her is their method of triage based on my inability to pay and she assured me that that was not the case.  I asked her after all of this waiting, would they treat me with pain medication and she said yes.  I told her how difficult it was being a person with Invisible Illness, not looking like I am sick and making someone believe I needed the pain medicine I said I needed.  She said they were doing everything they could to find me a bed and that many of the patients were being admitted to the hospital.

“I don’t need a hospital bed, I am not expecting to be admitted.  Here are my medical records that prove I have the diagnoses I claim that I have.  All you have to do is give me pain medication and I will leave!”

She said she would do everything she could and left.

I still waited.  I had been there over four hours, still the only one screaming.  At this point everyone, including people who came in after me had been taken back and there were just about three or four new people waiting.

I went up to the man at the front desk and said I was about to go home, but that I would wait if he felt there was a possibility that I would get pain relief and he said yes, they would most likely give me something for the pain.  Since there were no more patients coming in I asked him why I had waited so long, why were so many new patients taken before me?

He said, “Well, you already know what’s wrong with you.  Most of the people coming in here don’t.  When people come in here with chest pains they may be having a heart attack.  And so, if more people come in with chest pains they WILL be seen before you.”

I walked away stunned.  I thought, they immediately give people who are having chest pains an EKG.  If they are not having a heart attack they come back out into the waiting room.  Their pain gets better and so they sit, with their laptops or on their smartphones, or watching t.v. or reading.  They are calm and peaceful, and yet they let the WOMAN WHO HAS LUPUS SCREAM FOR HOURS BECAUSE SHE KNOWS SHE HAS LUPUS!!!

I also thought, If I already know what is wrong with me, if I do not require any testing, or pondering, then why not just treat me so I could leave?  This should have taken an hour’s time from start to finish.  I would not have taken up a bed for very long and then they could have quickly moved on. 

After nearly six hours of waiting they finally took me in.  They were all very apologetic, but I knew it was mostly because they feared I would sue them.  I was treated by a Physician’s Assistant, I told him about my diagnoses and my pain and I asked if he would be able to treat me and he said he would.  I was so relieved, all of this waiting had been horrendous but now I would have something for this horrific pain!

He went away and a nurse came in and he told me he was going to give me two shots, one for the pain and one to sedate me.  I did not recognize the names.  Due to my Fibromyalgia the shots were extremely painful.

Then the doctor came in.  He sat at my bedside and said, “Emily, my wife has Lupus and Rheumatoid Arthritis.”  “That’s what I have,” I said.  “I know.  So I understand how very bad your pain must be.  The problem is that Ohio has the highest rate of deaths in the country due to narcotics abuse.  And because of this it is against the law for me to prescribe narcotics in the emergency room.”

I couldn’t believe it!  If they knew that they would not be able to adequately treat the pain I was having (because most every doctor, nurse and administrator had witnessed it) then WHY had they let me sit there in the waiting room screaming all night??? WHY didn’t they tell me, “We’re sorry, but you might as well go home, because we can’t give you anything that will even begin to touch the pain you are having.”??

The doctor said to me, “The thing is, if you had broken your arm I would have written you a prescription for narcotics, but we are not allowed to treat people like you who are just having pain.”

I have broken my arm, my friends, I have broken my leg and my fingers, and let me tell you, THIS PAIN IS FAR, FAR WORSE!  How could one small broken bone compare to pain throughout my body???

The doctor left and the nurse said I could leave.  “Are you feeling any pain relief?”, he asked and I told him no, I wasn’t.  They gave me prescriptions that were little stronger than Tylenol which I decided not to fill.  I do not have health insurance and if the drugs that they shot me up with did nothing, why would drugs that were weaker help me?

So I called Grant and he came and took me home, actually worse than when I came in due to the mental anguish, and the pain from the shots flaring my Fibromyalgia.

I wanted to call The Cleveland Plain Dealer.  I wanted to complain to the top of the Cleveland Clinic’s administration, but in the end I realized that there was nothing to complain about.  Because that is their triage system, and I highly doubt that I would be able to change it.

The only things I can think of to do is to share my story with some kind of chronic pain foundation, and if you know of whom I should tell my experience to, please let me know.

And if you read this and feel that what happened to me and to others like me is unjust and inhumane, please share it with everyone you feel needs to see it.

Thank you.

One of the Cleveland Clinic’s Logos.  Courtesy of the Cleveland Clinic’s “About” Google+ Page

 

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A Post Impossible to Name, Part 2

Dear friends,

Thank you for coming to read my blog.  Before you read this post, you may want to read this post as this is part of a continuing series I am just starting.

I wrote this post in December of 2011.  It was meant to be a stand alone post that I wanted to be posted on another blog because I was too afraid and upset to post it on my own blog.  Although I did not want to put it on my blog I felt that what had happened to me has happened to thousands like me and it was a story that deserved to be told.

I am no longer afraid or ashamed.  As I continue to write this series, I continue to take back my life.

My hope is that those of you with chronic illness will gain comfort from it, and those of you are not can feel what it is like, if only for as long as you read this, for those of us who continue to lose family and friends every day just because we had the misfortune to get sick.

I ask from you that if this post touches you, if you get it, whether well or sick, that you share it.

Thank you and be well,

Emily

Friends Again

This past summer I had been very sick with my Lupus.  I was flaring, and the drug I am taking to suppress the disease was working too well, with me catching every little infection.  

Lupus, like many Invisible Illnesses is so unpredictable. You can have a diagnosis and live a pretty long life and even be able to keep on working.  Or you can get very sick from complications of Lupus and die.  This summer I came close to the negative end of the spectrum.

Because of this, I realized that I wanted to make amends with the woman who had been my best friend for over 20 years. “Jennifer” was the type of person who called them as she saw them.  She was as quick to give a compliment as she was an insult.  She almost had “no filter”.  She spoke her mind, whether it was good or bad, she would always tell you the truth. As we got older, a lot of people would tell me, “I don’t know how you could be best friends with her”.  But her love and devotion to me was fierce.

I broke off our friendship in 1999 when I realized that I could no longer accept her value system or the way she lived her life.  We had gone to college together.  I, with the mindset of learning a career so that when I married I could always be financially independent, and if something ever happened in my marriage I could leave with my children and stand on my own.  “Jennifer” did not have any such plans. After college she maxed out her credit cards and enjoyed life.  She did not seek to use her degree.  When I asked her how she was ever going to pay it off she told me, “I am going to marry someone to pay it off for me.”  And in 1999, when she did find that someone, I finally ended the friendship.

But when I came close to death, I started thinking of the 20 years we had had from age 9 to 29, especially our childhood, high school and college, that were good, were, if  fact, wonderful.  I felt that someone who has been married for 12 years and is now a parent of a five-year-old had to have changed after all this time. For a few years, Jennifer had been in my “People You May Know” on Facebook.  From time to time I would look at her Facebook and sometimes I would cry.  I would see her trips to Italy, to London, her two homes.  I wasn’t jealous of her, I was upset that in 2008 my body decided to quit on me and I had to give up my career.  If I had not gotten sick, maybe I would have been able to take those trips too, and have a nice home instead of living with my family in a too small apartment.

And in August I finally pressed the “Friend” on Face Book with the message, “Can we try being friends on Face Book?”

Immediately Jennifer wrote me back, accepting my friendship. She wrote that she was so happy that I had done this. She had mourned me for twelve years and had never replaced me as a best friend. She had never been able to find the intimacy, the sisterhood that we had with anyone else.  She told me that yes, she does have money but that she does not care about those kinds of things any more.  We each had one child, both boys, when we had dreamed of having little girls our whole lives, and had both been amazed at how great having a son could be.  Our kids were both starting kindergarten in the Fall.  She had been keeping tabs on me for years through our many mutual friends. 

 She asked me why I had broken up the friendship and when I started to tell her some things, she told me she had never said them.  I told her I wanted to live in the present with her and look towards the future and I said it was because I was so sick that I decided I wanted to reach out to her.  

 We decided to get together at a park that we had both never been to.  Neutral territory.  When we saw each other’s children it was like looking at a mini version of us as children, only the kids were boys.  She started to cry when she saw my son.  “Oh my God, he looks so much like your dad, don’t you see it?” 

 Jennifer picked us up at our apartment due to me not being able to drive too much because of my illnesses.  I was wearing bandages on my knees and wrists due to joint instability.  The day went better than I expected.  Our children fell into step with each other as we had when we were little and my son had the best, most peaceful play date he had ever had.  While they played we ate our picnic lunch. I filled her in on when I first became sick and how things were now, she had a lot of questions. I told her about my battle to receive SSDI and how horrific my trial had been.  I told her about the support groups and Twitter and the friends I had made. People who were just like me, who had literally prevented me from taking my life when times were extremely rough.  After the park she drove me home and I let her see my apartment, something my Anxiety never lets me do because it is always a wreck due to my being too physically ill to keep up with it.  We made long term plans.  I gave her my blog website, something I rarely do as I write under a pen name for my family’s protection.  I was so happy that I decided to do this and hoped that we could move on with our new life together and start fresh.

 We planned to get together again but both had busy schedules. We emailed and called each other.

 In September I received the results of the exams that the Disability Judge had ordered me to take.  I was shocked to see that major things, such as one of the doctors making me scream in pain, were omitted.  Some things were out and out lies.  They had written “yes” when I told them “no”.  My husband wasn’t home and since we had become close again I decided to call Jennifer.  I started to tell her what had happened and she said, “Wait.  Can I say something?  I have been reading your blog and I feel you are exaggerating your illnesses.  I spent a whole day with you.  You were fine.” “I took a pain killer that is stronger than morphine when you weren’t looking so I could continue to be ‘fine'”, I told her.  

 “I think you are not as sick as you make yourself out to be.”

 “I have 15 diagnoses, are you saying that I am making them up?”

 “No”, she sighed.  “Emily, I think that you have surrounded yourself with people like you whom all lay in they beds with their hand to their head and say ‘Woe is me’.”

 I had just received about the worst news one could possibly receive for a disability case.  I called Jennifer looking for comfort but instead my shock only deepened.  “So, you don’t believe I am this sick.”

 “I think that something has happened to your brain.  You are sick but I think the worst problems you have are mental illnesses that are making you believe that you are sicker than you really are.”

“Wow.  That’s all I can say is ‘wow’.  I reached out to you because I needed my best friend, because I believe that I do not have much time left and this is what you say to me?!  I can’t do this!”

 I hung up on her.  

 Twelve years had not changed Jennifer.  She was still the same.  Quick to judge, quick to decide what was right and what was wrong.

This may be an extreme case, Jennifer is definitely a person of extremes.  But how many of us have had that happen to us with our family and friends?  Our loved ones whom somewhere along the way must have gotten their degree in Rheumatology or Psychiatry and feel they have the right to judge us.

 At this point in my life, I need people who are going to believe me.  Maybe saying that I have 15 diagnoses sounds crazy, but that doesn’t make it any less true.  And a person knows exactly how sick he or she is and if they do believe their life is to be drastically shortened, that belief deserves to be respected.

I have lost so many friends and family due to my illnesses and my continuing decline.  I have three friends whom I know will stick with me no matter what, along with my husband and some family members.  That’s all I need to be with me, no matter how bad it gets or how long I live.

 

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A Post Impossible to Name

Dear friends,

What I am going to write to you about, what has happened to my family, has been to me so shocking, disturbing and upsetting that to put any title on it would make it seem like it was out of a tabloid, but it is the truth and I hope that you will continue to support and believe me as you have always had.  I don’t think I would believe it if I read it and in fact I still don’t quite believe it myself.  I am choosing to write about it, to be this open with you, as I always have had, because I know I cannot be the only one this has happened to.

It has taken me about a month to write about it because it has been so hard to wrap my mind around this, that something like this could have happened to Tyler and I , and Grant, from the outside looking in as we had been apart during this time.

It is too long to write about in one sitting so I plan on doing this in a series of installments.  I plan to blog about other things, have contests, etc., as it would be too hard for me to write non-stop about what happened, and I think very difficult for you to read.   I will warn you at times you may in fact not want to read it because it could upset you very much.

I will tell you that the ending is good, very good.  At the end of September Tyler and I moved to Ohio and the three of us are all together, again, for always.  I am sorry that I did not tell you right away, I wanted to share that with you so much, but as I said, what happened for us to come together the way we did was just too hard to write, and even now I am scared that it will be damaging to me.

I do not have any real plan as to how I will lay this out, how long this will be, or how often I will write about it, so please have patience and realize how difficult this will be for me.  I truly believe it is something that all people, chronically ill or not, need to read, that what happened to me needs to be shared with the world, so perhaps, if you feel that way too, you will help me share it.

After I proofread this I will press “Publish” and then I will truly be committed.  Your encouragement to help me keep going, to help me recover, and your continued prayers will be very much appreciated.

Thank you and be well,

Emily

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My Dinner With Tyler

Inspired by Mama Kat’s Writer’s Workshop.

Prompt # 1. Your first born child gets to choose where you eat for dinner…what would they pick and why?

Tyler has been feeling like a real star lately.  Last Thursday, Mama Kat and friends wanted to know what he was wearing for Halloween, this week they want to know where he would eat if he could pick any restaurant he wanted?

I really thought I knew what he would say, I was betting McDonald’s due to the whole Happy Meal toy thing but my interview proved surprising:

Me:  So, Tyler, if you could eat at any restaurant you wanted to, where would you eat and why?

Tyler:  Ummm, pizza!

This child has never in his life asked to be taken out to pizza.  I never knew that he would be such a cheap date.

Me:  And why would you want to eat there?

Tyler:  Because…it’s yummy! (Goes back to playing)

Me:  So…that’s it?

Tyler:  Yep.

And I’m thinking, “How am I going to make a blog post out of this?”

And here we are.

It’s not delivery, it’s Stouffer’s.

 

 

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Approved!

After a three year fight I have been approved for my Social Security Disability Insurance !!!

For so many who get approved there are a lot of mixed feelings involved.  To be finally declared disabled, that you are truly sick enough physically, mentally or both, can be extremely depressing.

I have to say I didn’t really feel that.  I felt that justice had finally been done, that the government finally believes what I have believed for four and a half years, that I am too sick to be able to support myself and my family.

I feel satisfied that those around me who did not believe I was truly sick enough to receive disability or had niggling doubts about how sick I am no longer have much of an argument, although I suppose some will still feel the judge must have made a mistake.

I feel an overwhelming sense of relief that soon I will no longer have to worry about clothing or feeding my son.  That constant fear, that sickening feeling in my stomach when I am in the supermarket.  The praying that no unexpected expenses come up.

But I also know that life, while better, will continue to be a lifelong struggle for us as the total disability income that Grant and I will make is a lot less that I alone made.  We will always have to watch our money and I guess I will continue to pray that no unexpected expenses come up.

Even though I know that I am too sick to work I still have a feeling that I am not contributing to society or the economy, that in fact I am sucking off of it.  Even though, I do not believe that of anyone else I know who collects disability, I still feel that way about me.

I wonder if, as my son gets older, he will understand the meaning of collecting disability and think his parents are losers, lazy, liars, or bums.

On Thursday I went to the doctor and I told the woman at the front desk that I was approved for disability.

“Sweet!”, she replied.

No, it is not sweet.  Winning the lottery would be sweet.  Not being sick would be sweet.  Being able to advance in my career would be sweet.  Providing for my son in the way I would like, in the way he deserves would be sweet.

I really don’t know much right now other than that I have been approved.  Sometimes receiving the initial payment and then the monthly benefit can take a couple of months.

To all who have supported me during this fight I thank you.  To all who are still fighting I say do not give up.  Justice will prevail for you as it finally did for me.

My SSDI Timeline:

October, 2009:  Applied for disability

January, 2010:  Initial Application Denied

July, 2010:  Denied During the Reconsideration Process, heading to a trial

July, 2011:  Disability Hearing

August, 2011:  Social Security Doctors’ Examinations

September, 2011: Results of the Social Security Doctors’ Examinations

December, 2011:  Disability Denied, Appeal is Filed

2012:  Social Security Accepts Appeal, Finds More Fault With Judge’s Decision.  Case is Remanded Back to the Lower Court, I am Given a Hearing “Do-Over”.

October, 2012:  Second Disability Hearing

 

 

 

 

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Wearing the Latest in Monster Fashion

Inspired by Mama Kat’s Writer’s Workshop.

Prompt #5 Halloween is coming! Show us what your kids will be wearing.

When I saw this week’s prompts I knew immediately this was the one for me.  Any excuse to have his costume on and Tyler is there!  He even helped me with the poses!

After three years in a row of being Spider-Man (Red Spider-Man, Black Spider-Man, and then Red Spider-Man again) we have now branched out in a big way to…

The Werewolf!

This year Tyler has gotten into “scary” and “spooky”.  After mulling over a Skeleton, and thinking for a couple of months that he wanted to be a Mummy (glad I didn’t buy the costume early!), Tyler finally decided on the Werewolf.

Wearing ripped up jeans and showing off his hairy arms, Tyler really works the Werewolf look.

When I told Tyler that his Werewolf blog will be up today he said, “I’ll bet they will be scared!”

We’ve already been to one community Halloween party, have another one on Saturday and then there is the Halloween parade at school and Halloween itself.

That’s a whole lotta Werewolf.

It’s always fun to think back to Tyler’s costumes throughout the years and to wonder what he will want to be next year.

I’m pretty sure he will want to be some sort of monster.

 

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Tuesdays With Tyler: Losing My Religion

I am raising Tyler as a Catholic, like me.  I had him christened at three months old…and that is the last time he or I have ever been in a church.  For many years due to chronic illness I have been unable to attend Mass.  By the time Saturday evenings rolled around I was exhausted, in for the night, and mornings are the toughest for me; for pain, brain function, fatigue, etc.  I used to attend church weekly; dressed nicely with hair and makeup done, and now just doing those things is enough to ruin me for the day.

After feeling guilty for many years, I had made my peace with it.  It wasn’t like I was spending Saturday nights out on the town or heading to the beach on Sunday mornings.  I was just…resting.

And then came Tyler.

I knew I wanted to raise him in the church and I figured I was somehow going to HAVE to find the will to get him there.

He is now six.  And really needs to start CCD next year.

I think I am feeling well enough to try to take him to church, only now, no real surprise here, he doesn’t want to go.

Lately he has been expressing interest in religions.  How does Orthodox Judaism differ from other Judaic religions?  What is the difference between being a Christian and being a Catholic?  (Yep, I’ve got a budding genius on my hands.)

It seems like the perfect time to start going to Mass on a regular basis but when I talk about trying out a service after our Saturday activities or attending a Sunday school class to learn more about God and Jesus, Tyler says, “Maybe next week, Mommy.”

It would have been so much easier to have just taken him to Mass from when he was a baby, when he had no choice in the matter, but I just wasn’t feeling well enough at the time.

Lots of Chronically Ill and Catholic Mom guilt here.

As a child I remember being at Mass with a bunch of little children’s religious books which I would read to pass away the hour that I did not understand.  Music was always the best part of the Mass for me and I started singing in the Children’s Choir when I was ten.  I did Folk Group in junior high and also sung in the Adult Choir.

At some point I guess I am just going to have to drag Tyler to church, and soon.

I just hope I have the energy.

Photo Courtesy of Living-The-Mission (Wiki)

 

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Someday I am Going To…

Inspired by Mama Kat’s Writer’s Workshop.

Prompt 5.  Someday I am going to…(Inspired by Marcy Writes)

Someday I am going to build my blog back to where it was.

The day before my last blog post on January 11, 2012, I had been the Featured Blogger on the SITS Girls website.  I had nearly 60 comments on my blog and many more from fellow SITS Girls on the main site.  Comments from other chronically ill moms saying “Me too!”  Healthy women thanking me for exposing them to another side of parenting and for helping them understand their chronically ill friends better.  Others who thanked me for educating them and others who would keep me in their prayers.

At the time I had been struggling mightily with depression, anxiety and agoraphobia, along with Lupus and Interstitial Cystitis.  For the first time in my four-year blogging career I had Writer’s Block

In my last blog post I thanked everyone who came to my blog on my SITS Day.  I said that this funk I am in will not be forever, that the words would come freely once again.

Only they didn’t…for eight months.

During that time I went in-patient for a time, lost my home and husband, and moved to my mother’s house with my son.

I watched my Alexa Rank drop from just around the one million mark all the way to 12 million.  BlogHer took its ads off of my site.  Just when it looked like I would finally be turning a profit, my illnesses got the better of me and I had lost everything I had worked for.

I started to feel better in the middle of August, and on September 4th wrote my first blog back.  My readers came back, so happy to see me writing again, and in about a month I saw my Alexa Rank go from 12 million to just around three million.

Blogging again has been a sign of my recovery.  I feel purpose in my life when I help people like me and when I show people another way of living.  I gain support when my readers offer me advice and virtual hugs.

I have lost so much but I plan to keep on writing and promote myself better.  I will apply to BlogHer ads again.  I will see my AR drop even more.

Someday I am going to build my blog back to where it was…and even bigger.

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F*cking Interstitial Cystitis!

After having increasingly worse vaginal pain, I went to my primary care practice on Thursday.  Since I have only just started taking care of my health again in August, I don’t have a gynecologist.  I was seen by an intern, who had to call in the doctor.  So I had two strange men peering into my vagina.  They found nothing wrong with me, although they did believe I was in great pain.

And then, I felt like an idiot, but party because my memory is so poor and partly because I had blocked it out, I said, “Oh yeah, in January I was diagnosed with Interstitial Cystitis.”

I.C. is a chronic, long-term inflammation of the bladder wall and is associated with other conditions I have such as Lupus, Fibromyalgia and Ulcerative Colitis.

The diagnosis of Interstitial Cystitis was the last straw for me back in January.  I was in excruciating, non-stop pain causing me to be unable to sleep for three to four days.  The urogynecologist wanted to do a procedure on me in the hospital, the diet he gave to me was ridiculously strict; no coffee, no spicy foods, almost all fruits, and yogurt, even things that are known to be good for you were off-limits on this diet.

The depression from being turned down for disability, pain from extremely dry mouth, having to apply for food stamps, again, and now this diagnosis, was severe enough to make me go in-patient.

I ignored my I.C. diagnosis and I eventually went into remission.  Until about a month ago.  I tried treating it with an over-the-counter medication for yeast infections which helped for a little bit and was relieved a bit by my period.

Which brings me back to Thursday when I couldn’t take it any more.

I can definitely relate it to a dietary change.  I had made chili and I put the chili powder in my bowl only since I am the only one who likes spicy food.  I put in a lot.

My doctor is asking for my records from my urogynecologist in New Jersey and will try to connect me with one here.  I see him again in two weeks.

I cannot wait two weeks.

I am swallowing ibuprofen like candy.  Wearing jeans is horrific.  It just hurts all of the time.

I am going to call him tomorrow and say I need something stronger for the pain, a quicker appointment, something!

Grant is afraid that this bout with I.C. will put me into the same frame of mind that it did the first time, but I was very depressed before I even got the diagnosis.  Yes, I.C. is a very difficult disease to deal with but I feel more rational about it now.  I know the diet is vastly different than the way I like to eat, but if it will stop the pain I am all for it.  And maybe it will turn out that it is only one or two foods that bother me and not the entire list.

Instead of looking at it like “Not another g*d-damned diagnosis!”, I am back to looking at it like, “Well, what’s one more diagnosis?”

 

Photo Courtesy of  ICN Sales

 

 

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