Chronically Ill and Displaced by Hurricane Sandy

When I ask people in my Cleveland suburb if they know that many people are still homeless or unable to access their homes due to Hurricane Sandy’s damage, they are shocked.  I say to them, “It’s on the news, everyday”, and they say they either don’t watch the news or pay that much attention.

During the holiday season when you are caught up in the stress of buying gifts, and the holiday party fun, when you are home with your family cozy and watching Christmas specials and baking cookies, it’s hard to imagine that many families and individuals will be having their Christmas dinner at churches, high schools or restaurants generous enough to donate free meals.  They don’t have a home to open Christmas presents in.

I’m not saying this facetiously or trying to make you feel badly or guilty.  I think if I wasn’t from New Jersey and seeing the posts on Facebook from my family and friends about calls for donations or calls to volunteer, I probably would let Sandy slip my mind too.  When there is joy and celebration all around you, you don’t WANT to think about what is happening outside your little corner of the world.  I think this is just human nature.

Through Twitter I met a disabled, chronically ill man left homeless after Hurricane Sandy.  This is the story of John “JC” Colyer.

“I have a type of Ataxia called Cerebellar Ataxia.  It is a chronic disease that affects my balance, coordination and speech.  I have been on Social Security Disability since August 2010.  I worked for 14 years with “The B Street Band”, a Bruce Springsteen tribute band.  I fell and broke my left knee cap in January 2010 and that was it!

I have lived in Seaside Heights, NJ for 13 years and we took a direct hit from Hurricane Sandy on October 29, 2012.  I evacuated to a shelter on October 28th.  I spent 15 days in 3 different shelters.  The Red Cross and FEMA have been very helpful to me and I am grateful.  I now live in a FEMA funded hotel until I can go home, hopefully in three to six months.

It’s been traumatic; stress makes my Ataxia worse, but I try to keep positive and be supportive to others, especially to children.  I’m finding what I call my “new normal”.  It is still very shaky but I’m still trying!

I’ve adapted my life to my disability, I don’t try to fight it!  I can find things to complain about but I choose not to.”

The Hurricane Sandy Relief Concert was held last night (12-12-12).  If you would like to give to the relief fund, you can purchase donation gifts for your friends on Facebook, text $10 donations to 50555, or use check-ins to Foursquare or Get Glue.

Or you may donate through my original Hurricane Sandy Relief Effort post.

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Too Sick to Be Seen?

Since August/September I have had a bad cough.  I thought it was my usual seasonal allergy thing, where every year I cough, especially at night, and have to spit up what looks like clear liquid (sorry to be kind of gross there).

I thought when I moved to Ohio, to the Midwest, that maybe my allergy would go away.  Instead it got worse.  The worst was at night, although it would happen during the day too.  I would wake up coughing and choking on my saliva.  I couldn’t stop coughing.  I took to having cough drops, something to drink and tissues to spit up in at my bedside.  It would affect my sleep because it would happen more than once a night.  It flared my Costocondritis.

So many other things were going on with me; my Lupus, Fibromyalgia, Myofascial Pain Sydrome and Interstitial Cystitis were flaring.  Who could worry about a cough, although it was very disruptive.

On the suggestion of my mother-in-law, I started sleeping sitting up, thinking it was a post-nasal drip sort of thing.  It was very hard to sleep like this and it would take me a while to go to sleep.  It didn’t work, I was still having coughing and choking fits and I went back to my bed.

After seeing my Primary Care Doctor many times at the clinic on the East side of Cleveland for my ailments, I finally came in last week just for the cough.  I made the mistake of telling him it probably was allergies.  Never tell a doctor you think you know what your diagnosis is.  They are either going to get right on board with you if it is something easy like allergies, or think you are a hypochondriac if you say you have cancer. 

First I saw the Nurse Practitioner.  She said, “Well you probably have GERD. Do you have a sour taste in your mouth?”  I told her I did not and said I did not have the other symptoms she listed.

The doctor listened to my chest and said my lungs were clear and gave me an OTC medicine similar to Claritin and a prescription for a generic nose spray if that failed.

I started taking the tablets.  Two days went by and no relief.  That didn’t seem right to me so I called the manufacturer’s drug information line and asked how long I should be on the medication, when would I feel some relief?  “Well, you are supposed to feel some relief within six hours!”, she said.  I dropped the tablets and tried the nose spray with the same results.

In the meantime, sometimes when I would start to speak all that would come out would be coughing.  I would have “attacks” during my daily life, always having to carry cough drops or needing people to get me water to stop my cough.

One day I even coughed up a trace amount of blood as I spit into the sink.  My voice is hoarse.

This week I vowed to see my doctor again.  This was crazy, I wanted to say ‘Where do we go with this next?!’

On Friday I came in as a walk-in, since a large part of their appointments are walk-in.  I usually come in as a walk-in because it sometimes can take two weeks to see the doctor.  The receptionist told me that they didn’t have walk-in hours until noon and it was 8:30.  I had always thought it was walk-in every day, I guess I had never tried to come on a Friday morning.  I could see if my therapist was free at any point this morning, I thought, then I could come back around 11:30.

I told the receptionist that’s what I would do and she said, “Well the doctor has a very busy schedule.  You are not guaranteed to be seen.”  “What if I come in at 11:00 or even at 10:30 and I am the first person on the walk-in sign-up list.  Surely he would be able to see the first person on the walk-in list.”  This logic seemed to baffle her and she replied that she still could not guarantee it.  When I told her I had had a cough since August, she became a bit alarmed and said that she would make me the next person to see the Nurse Practitioner, and that she would make the determination whether I would be able to see the doctor in the afternoon.

While I waited I started talking with a couple of older women.  They were both disabled, they told me, both turned down by the court and both awaiting appeals.  Ohio is one of the hardest states to be awarded disability.  I told them why I was here and one of them said, “Girl, you could have lung cancer.  My friend had a cough for a long time, she was diagnosed with lung cancer and she dead now.”

I also told them I had Lupus.  The other woman said, “Oh yeah, Lupus is very serious, you can definitely get cancer with Lupus.  My friend has Lupus and now he has prostate cancer too.”

I wanted to thank them for their encouraging words but decided to go back to my iPhone.

The nurse-practitioner called me in.  “You were here last week, what do you want now?”  “I came back for the same thing I was in for last week,” I said.  She walked me back to the office.  “Did you even try the medicines the doctor gave you?”  “Yes, of course, I tried both of them and they did not work so that is why I am back.”  “I told you last week you had GERD, you probably have GERD.”  “Ma’am, with all due respect I know what GERD is and I do not have GERD.”

She was putting my symptoms in her computer to see what might pop up.  I said, “I don’t think you will be able to diagnose me like that.”  “You’re right.  Ma’am you are too sick to come in as a walk-in!  Walk-ins are for emergencies only, people who have run out of their medication, who might have the flu or pneumonia.”  I apologized to her, said no one had ever told me that, but didn’t having any undiagnosed cough since August count as an emergency?

While we were speaking she was looking at my chart, at my medicines.  An anti-depressant, anti-anxiety medication, a sedative when needed, and something for sleep.

“Wait, are you anxious?”

“No, I am not anxious, I have had a cough that has not gone away since August.  Look, just because I am bipolar does not mean I have not had a cough since August.”

And then, doo, doo, doo, doo, the radar had hit it’s mark and focused right there.

“Oh, so you’re bipolar.”

This has been happening in every doctor’s office since I have moved to Ohio.  As soon as they learn I am bipolar, all thought of the possibility of me having Lupus or Interstitial Cystitis goes out the window.  I have offered them medical records of my diagnoses, but they won’t even look at them!

Grant had had a good idea.  If they will not look at my medical records, why not bring the judge’s decision on my disability case?  Which addressed all of my diagnoses and said that yes, my bipolar was a part of what went into me winning my case but I mostly won because I had Lupus and other physical illnesses that prevented me from working. It was the government, you have to believe the government, right?

I offered them to her and she said, “I don’t want to see those!”

She asked me when was the last time I had worked and what did I do?  I am not sure what this has to do with my cough but I told her that eight years prior to being disabled in 2008, I had been a Recruiter for the pharmaceutical industry where I recruited in Phases I-IV clinical research, recruiting from the Associate to the V.P. level, people who were doctors, nurses, scientist, people like herself.

She said, “Well, you’re very smart!  I have hard that some bipolar are smart.”

As if I was in a vegetative start and some scientist has just discovered that there was some spark of life in the old girl.  I was too stunned to even reply.

“How is your sleep?”

“It is very poor due to my cough and my pain that no one around here will treat.”  I told her about the horrendous experiences I had had at their beloved Cleveland Clinic.

“Well the Cleveland Clinic is a for-profit hospital.  I’m just telling you like it is.  They don’t have to treat you.”

“I know they don’t, but since they are a hospital dedicated to helping sick people, and this is America, I think the decent thing is that they should. ”

“Well you are MANIC!

“Ma-am, unless you have a degree in Psychiatry or in Psychology, you can not pronounce me manic.”

“I was a psychiatric nurse for 10 years!”

Oh my God, you were??  For 10 years, and you are just learned in your meeting with me that people with Bipolar can be smart???  God help the poor in-patient souls when you were caring for them!

She said, “Well the only thing I can offer you is cough medicine and cough drops, do you want that?”

Why not?

When I got home and read the label on the bottle it said, “Ask a doctor before using if you have had a cough that won’t go away.”  There were no instructions as to how to take it.  In addition it is possibly dangerous for people with Fibromyalgia to take products with Guaifenesin.  But since the nurse only looked at my one diagnosis of Bipolar Disorder it is safe to say she did not read that I had Fibro. I also feel pretty confident in saying that even if she had know I had Fibro, that she would not have ever heard of the controversial Guaifenesin Protocol.

I made an appointment to see the doctor on Monday, still baffled. All it would have taken was five minutes of the doctor’s time to say, “Holy crap, I cannot handle you here.  I can not X-ray your lungs, I don’t have the equipment to diagnose you with anything.  Here is a referral to see a Pulmonologist!”

I could have possibly been seeing a Pulmonologist this upcoming week.  Instead I have to see a Primary Care Doctor and who knows when a Pulmonologist can see me now with the holidays?

Rich or poor, insured or not, “sane” or Mentally Ill, to me it just seems a shame.

How about you?

 

 

Prostituting Myself

After some successful Black Friday shopping, Tyler and I headed to Marc’s to do our weekly shopping.  Marc’s is, to me an Ohio wonder as their groceries are about 50% less than the local Giant Eagle’s and a third of the prices that I paid back in New Jersey.

You do get what you pay for.  The aisles are cramped, the lines are long and there appears to be some sort of anarchy at work there.  But mostly no one minds because their either love the bargains they are getting or cannot afford to shop anywhere else.

It is another rough month for our family, trying to make our money last until I get my disability award.  It has been difficult with both of our cats absolutely needing veterinary care and Tyler and I having to buy clothes and snow boots for a Cleveland winter.

Before shopping, I estimated the price of what was on my grocery list and thought I had enough money.  Marc’s only accepts cash or check, which doesn’t really matter as I only have cash.

As the cashier was ringing up my purchases, I started getting worried that I would not have enough.  I tried to get her to stop ringing but she didn’t.  We were next to one of those claw games where you can win an Angry Bird, and Tyler was begging me to let him try.  The total came up to $63.99.  I gave her sixty dollars.  It was time to turn to the change I had.  Would I have $3.99 in change?  I nervously started counting my quarters, Tyler continued to beg me to let him try the claw machine.  I came up with $3.00 in change, the other .99 looked doubtful.

From behind me I heard, “Vy?”

“Excuse me?,” I said.

“Vy don’t you do this at home?  That’s all I want to know, Vy you don’t do this before you come here?”

I turned full around to him.  I faced him.  I said, “Why don’t I do this at home?  Because I am homeless, bankrupt and uninsured, okay?  I am not counting my pennies for fun, I am counting them because these are all I have!”

I turned back to counting.  The cashier was helping me.

“I am sorry”, he said.

“That’s fine”, I said. “Perhaps next time you will think before you speak.”

I took away a Gatorade. (I somehow feel the need to justify my purchase to you.  Grant and I need Gatorade because our mouths are extremely dry from our medications and Gatorade seems to be the only thing that works for us.)

“Here, now I have enough money to pay.”  This seemed to confound the cashier and I had to explain to her why I now had enough.  She fumbled with taking the item off and coming up with the new total and I feared the manager would have to be called.  I was so angry, all I wanted to do was leave.  Meanwhile Tyler was still screaming for an Angry Bird and I can barely tell him “no” or “maybe another time”.   I didn’t have the time to be able to explain to him how these games are almost impossible to win and that they mostly waste your money.

The cashier finally got it right and then I heard, “Here, take this.”  I turned around and the man was holding out a $10 check.  I could not understand him fully but he said something like I am sorry, I hope this helps or this may not be too much, just a little something for you.

I looked at this sweaty, slimy bastard and I took the check and said thank you.

Nothing would have pleased me more to tell him where he could put his check but the truth is $10 means I can get Tyler the game he wants for Christmas.  I took it for him.

I am tired of constantly having to prostitute myself for my family.  I will keep doing it because I need to but it does take a toll on me.  Every time I swallow my pride or get treated poorly on a daily basis because I am uninsured, homeless and sick, part of me does die.

I know there is light at the end of the tunnel.  I received a fully favorable decision on my disability case in the middle of October but as it stands I have heard nothing back, and indeed was told not to even bother them for at least 30 to 45 days.  November 29th will be the 30 day mark and I will be calling.  Where is my money?  I have been waiting three years to be to be told that yes, the government now believes I am disabled and I continue to wait, a prisoner of their whim, as to when they decide to pay me.

“Lovely Ladies”, courtesy of ukstudentlife.com

 

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.

 


 

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.