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?

The post Too Sick to Be Seen? first appeared on Mama Sick.

2.) We’re going around the table and it’s your turn to share what you are thankful for…go!

To say that I am thankful for my husband, child and I being able to be together after being apart for six months is obvious.

And so something happened to me on Tuesday for which I am highly thankful for:

On Tuesday I got my Ohio handicapped placard.

I had one in New Jersey and was literally too sick to be able to get one in Massachusetts, but now after nearly two months of living here I have gotten one in Ohio.

I moved here with some of my diseases such as Lupus, Interstitial Cystitis, and Fibromyalgia starting to flare, and now due to the swinging temperatures of fall, Myofascial Pain and Costochondritis have followed.  I am blessed as to having a Primary Care Physician willing to write a prescription for one.  I received his Rx last week but have been too busy to fill out the application.

On Monday I had an appointment to see a Rheumatologist at The Cleveland Clinic.  I had to park far away and I had a long walk once I got into the hospital.  I arrived at the doctor’s office barely able to walk, shaking with pain.  I nearly fell getting on the scale and I had extreme difficulty getting on the exam table.  I tried not to scream.

After the doctor’s appointment I had to take the elevator and go to the laboratory for blood work.  When I was finished I asked the phlebotomist if I could get an escort and a wheelchair as I was now unable to walk back to my car. The phlebotomist took me herself, dressed only in her uniform.  When I thanked her for her kindness she said, “My daughter has Myofascial Pain and I understand what you are going through.”

I realized that I MUST get my placard as soon as possible.  That I was only getting worse and how would I shop for the holidays?  My heart sank when I saw on the application that it could take up to ten business days.  Hoping to speed things up a bit and to save on the cost of a stamp, I took it to my local Bureau of Motor Vehicles.  The woman at the desk took my check for $3.50 and my application and typed a lot.  “Okay”, she said, handing me back some paperwork.  I took it from her and inside was a handicapped placard.  “But…I thought it would take up to ten business days.”  “Oh, no.  Not if you bring your application in person.” I had tears in my eyes and relief flooding through my body.

I am one of those people who appear not to need a handicapped placard.  You may wonder how a woman who can walk on two feet and doesn’t look sick can have the nerve to park in a handicapped space.  What you do not know is that due to my joint and hypermobility issues I am unable to use a cane.  What you do not see is that when I get into a mall, department store or a museum I must use a scooter or be pushed in a wheelchair, and I don’t even look like I deserve one of those mobility devices either.

I used to wonder, “How could this woman use another person’s handicapped placard just so she could get a good space at the mall during the holiday season?”  I used to think, “Maybe if that woman would lose some weight she wouldn’t need that scooter.”  I used to get angry when I saw people at Disney World in a wheelchair get to be pushed to the front of the line when they were fully able to get up to walk to the ride.

And now…

I don’t.

The post Thankful first appeared on Mama Sick.

Today I am 42, and it’s not the age I turned, and I don’t hate or dread that number, it’s just that once again, I am so sick and in so much pain on this day.  I have the unfortunate luck of having been born in the season of Autumn.  For me and so many others like me, Fall is always my worst season and I dread it even more than Winter.  My body doesn’t like the sweeping temperatures, going from 35 degrees to 65 degrees, the really hot days with the sudden cool days.  If I am not flaring already, I start to, if I am in a flare it only gets worse.

Through the past years I could look back on Halloween or my birthday and remember that I would be having such a good time…if I wasn’t in for the pain.  For several years my township would have this Haunted Forest, before they became afraid of lawsuits, I guess, and shut it down.  It was one of the coolest Halloween things I had ever seen, it was put on by the local high school kids and was different every time.  I have an image of going to it on my birthday with Grant despite having a Costochondritis flare, before Tyler was born.  I wanted to go anyway despite being sick, I loved it so much.  But now when I remember it, I remember standing in line in the cold and it hurting so much to breathe.  That is my main memory of the event.

Last week, due to gaining so much weight because of the as yet undiagnosed hormonal issue, I had to go shopping for pants and shoes because nothing fits any more.  I went to DSW Shoes and I told one of the associates about how swollen my feet were and how I needed a sneaker with ankle support because sometimes I cannot walk, and she was very helpful in giving me advice about the type of shoe I needed.  To my surprise and dismay I fit into a size 11!  Last year I was a size 9.5 and before all of this started I was a size 9. I had known my feet were swollen, I had worn flip flops all summer, but not to this extent.  I was kind of shocked as I had first tried on a size 10 and moved my way up.  I was walking around with my size 11 sneakers and the woman came over to me.  “Are they comfortable?”  I told her yes but what I really wanted to say is, “You know what, my feet are NEVER comfortable, even when they are bare, they hurt every single second of my life!”  The size 11 was as good as it would ever get.  I also picked up a shoe which I was a size 10 in.  Other than these two pairs of shoes, I don’t have another shoe in my closet that fits.

On Thursday I went to the Rheumatologist because the drug that I have been taking for three years to keep the Lupus/Rheumatoid Arthritis in check is making me sick.  So now I am flaring and have no medication to take for it.  The doctor wanted to run all the blood tests for Lupus to see where I was in order to figure out the possibilities to treat me.  He examined my very swollen fingers and wrists and we talked about my visits to the endocrinologist’s and how frustrated I was at being undiagnosed.

“With everything you have, the longer you live, unfortunately it is common that you will receive more and more diagnoses.”  That it was just the way it is.

“I don’t mean to minimize what you have but at least you are still here, you know?”

That’s it?  All you have to tell me is that at least I’m still HERE?

I told him, “I know I am still here, but I am miserable every day of my LIFE.”  “I know you are”, he said, sympathetically.

I know people have it worse, that right now people with Lupus are in the hospital fighting for their lives.  I know people have died from some of the diseases I have, someone I know just died this month.  But is that the best I can say about my life, that at least I am still here??

I don’t want to be grateful that I am still here, I am tired of being grateful that I am still here. Being here is not what it is cracked up to be.  As I go into my 43rd year I am facing another year of constant pain, and another long journey to find out what is wrong with me now.  

Is it too much to ask and hope for that there should be more to my life than that I am just here?  For once, I would like to have something that resembles a normal life.  A day without pain, may I dare say a week?

On my birthday, is it wrong to not be grateful that I have made it to the ripe old age of 42?  

On my birthday, is it wrong to wish for life to be more than just existing?  

On my birthday, today I am so goddamned tired of being grateful that I am just still here.

Photo courtesy of 5 Minutes For Mom

The post Another Birthday…At Least I’m Still Here?? first appeared on Mama Sick.

Inspired by Mama Kat’s Writer’s Workshop.

3.) Describe what you think your life would be like if you had never had kids.
(inspired by Amy from Somebody’s Parent)

I must thank Amy for this prompt for this is something that chronically ill people who are raising children probably think about every day of their lives.

My husband and I were married when I was 33 years old in 2002 and had planned to wait about a year before we would try to have a child, but two months into our marriage I started to show the symptoms of Rheumatoid Arthritis. Children had to go on the back-burner, as I would go on a journey of extreme pain and frustration until I was properly diagnosed.  Once I was, it took me over a year to start feeling decent to the point that living with RA was not such a struggle and that as long as I took my medication regimen, I felt pretty good. Other diseases and conditions developed such as Fibromyalgia and Chronic Fatigue, but with medication and proper rest, my illnesses were livable and I was able to continue working full-time.

In 2005, my husband, who is also chronically ill, and I felt we were in the best health we were ever going to be. We made an appointment with a genetic counsellor who told us that because Grant and I did not have a family history of our physical illnesses, a child would only have a 1-2% chance above the average population of inheriting them.  I researched my medications, decided what I would stay on and what I would come off of, and in October of 2005 I started to monitor my ovulation and basel temperature as I was 36 years old and was not sure how easy it would be to conceive.

Grant and I decided that we would leave conception up to God.  Meaning that for us, and I do not judge anyone else, if we could not conceive naturally then that would be a sign from God telling us that a child was not meant to be.

But I guess Tyler was because I conceived the first time I tried!  It was the happiest time of my life. I was the type of woman who had wanted a child since she was a child.  I think Grant and I were both thinking that we would want at least two children.

I found out I was pregnant January 7, 2006.  On January 9th, Grant and I were awarded a very large sum of money from a lawsuit.  We were on top of the world.

When Tyler was born I suffered terribly from postpartum depression.  I wouldnt describe Tyler as a baby who had colic, for he was happy most of the time, but he would stay up anywhere from 10 to 14 hours at a clip, which as many of you know, is extremely unusual for an infant!  I was exhausted, I would walk the floors, trying to get him to go to sleep.  When Tyler was four months old I found I could not walk on one of my feet, the pain was so bad that I went to the emergency room.  The diagnosis:  Your RA is flaring.  They sent me home with crutches, which was idiotic for someone who had Costochondritis.  Sure enough, all of my ribs started to flare.  I couldnt use the crutches so I had to crawl to my baby when he needed me and bring all of his things to the floor.  We lived on the floor.

Despite this and when those flares calmed down, I never tired of playing, singing and just being with Tyler.  As he became more mobile, I loved taking him to the park, pushing him on the swings, even going down the slides and playing on the jungle gyms myself.  Motherhood was finally the completion of the life that I wanted.

I went back to work when Tyler was seven-and-a-half-months-old.  I was doing the Super Mom thing.  Grants health began to fail so badly he was let go from his job in May of 2007, as he never told them about his illnesses.

In October I suddenly found myself very sick.  Painful joints, exhausted, I was popping narcotics like they were candy and falling asleep during my commute.  In March of 2008 I was laid off, a victim of the economy. I looked at this as a blessing.  I was just tired and if I rested I would get stronger, and then I would look for another job. Instead I just got sicker, by the day.

I was diagnosed with Lupus that June.  That was it for me.  I could not  work any more.  I kept Tyler in daycare because I couldnt take care of him on a 24/7 basis.  As I wait now for my disability, all of our money is gone and we will file for bankruptcy this month.

Did having Tyler make me sicker?  Yes, probably, as is often the case with hormonal, postpartum women.  Do I regret having him?  Here is where it gets tricky.  No, not for ME, for it is through him that I experience moments of profound joy.  But for HIM…yes, I do.  Gone are all of the dreams I had for my son.  The dreams that most American families have and achieve.  A house with a backyard, helping him go to college, taking him on vacations.  I dont know if this will ever be and I wonder if some day he will turn on me, and so he should.  He will never remember a time his parents werent sick.

Grant and I were stupid, naive.  It never occurred to us that we could get sicker.  If we had thought this through we never would have had a child because for US, and I capitalize that, because I do not want to offend other chronically ill parents, that would have been irresponsible.

If I had never had my child I might be a bit healthier, less tired, maybe still working, with a lot more money. But there would be a hole in both Grant and I s hearts, for Tyler is truly the completion of our family.

For us, Three is the Magic Number.

http://youtu.be/m3Li-rTuBKs

The post If I Had Never Had My Child… first appeared on Mama Sick.