Trip to the Surgeon

I saw the surgeon yesterday to see about my gallbladder issues and he told me that in the absence of pain he did not believe that my gallbladder was the cause of my problems. Part of me was disappointed because I cannot deal with having this debilitating nausea with no cause and no effective way of treating it. I’d actually would be willing to have an organ taken out of my body if this would mean an end to this misery!

He mentioned that sometimes diabetics have trouble emptying their stomach which could definitely be a cause of my nausea. Actually thrilled to have somewhere else to turn, I looked this up on my smartphone on the way home but just like a gallbladder diagnosis, I did not have enough symptoms to indicate it.

I saw my endocrinologist too and was given a clean bill of health with my diabetic issues.

Today I was on Pinterest and I came upon a post that said something like “5 Symptoms You Didn’t Know Were Linked to Fibromyalgia”. I have been in remission with Fibro but I clicked on it and one of the lesser known symptoms was sweating. Then I just started googling all of my symptoms with Fibromyalgia and every one of them linked back to Fibro, including symptoms that I had chalked up to medication side effects such as dry mouth and hand tremors and even a low-grade fever.

I am some what excited about this being a possibility but I don’t see my Rheumatologist until the beginning of March so I can’t confirm it. Then I got depressed because there’s not a whole lot of treatment out there for Fibro and I pictured myself being nauseous forever and it wasn’t pretty. I cannot take a lot of the medications for nausea because they interact with my mental health medications and the one I am on now takes a long time to work and makes me tired.

My house is a wreck and I can’t do much with Tyler. Jacques waits on me hand and foot but he can’t do everything. Tonight is Bingo night at Tyler’s school and I am praying that I feel well enough to go. I hate disappointing him but sad to say he is used to it and still tells me I’m the best mom in the world. But I wonder if he will resent it when he grows up? There was a time in Tyler’s life when I felt pretty good but he was too young to remember it.

Part of me says I should be grateful because I’ve certainly been sicker than this with the pain from Lupus and the mental illnesses. But for my son, I just want to be better.

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Thinking About Canceling My Appointment, What Do You Think?

Last month I was having extreme fatigue. The kind where if you could even make it to a shower, that would be your only “event” of the day, you were done. Where it hurt to life your arm. Where you can’t get off the couch and you just have to let your laundry pile up and the house get messy.

I went to another doctor in my regular doctor’s group since she couldn’t fit me in. She was convinced I had Mono and tested me, along with my thyroid. Everything came out normal but the extreme fatigue was still there.

There’s been an avenue in my odyssey of illnesses that I have not explored, although many people have urged me to and that is Lyme Disease. Lyme Disease can often be misdiagnosed as Rheumatoid Arthritis, Lupus or Fibromyalgia and of course I have all three.

About 12 years ago, I did test positive for Lyme and my doctor wanted to start me on the short course of antibiotics that can be effective if the disease is caught early. I wanted a second opinion so I saw an Infectious Disease Specialist. She told me that I tested negative, that I was not sick, nor did I look sick. About six month later, the pain in my feet started on what was to be a lifelong journey.

Looking back with the knowledge that I have gained from being a professional patient, I wonder why the Infectious Disease Specialist didn’t give me a third, and deciding test. I also now think, “What really would have been the harm in taking the antibiotics?”

When I saw my Primary Care Physician to tell her I was still fatigued, I mentioned Lyme Disease to her.

“Did you ever have a bullseye rash?”, she asked. I told her I had never noticed one and she said she never tests anyone without a bullseye rash. Which is a little scary because many people do not present with the rash or, if they are bitten on their scalp, never see it.

After speaking with a good friend in the “Lyme Community”, I was given a referral of a “Lyme Literate” doctor. He was a Rheumatologist who noted Lyme as one of his specialities and was used to dealing with people who had Lupus and Rheumatoid Arthritis too.

But making an appointment with him proved to be a challenge. When you schedule an appointment with any Cleveland Clinic doctor, you are sent to central scheduling. The woman scheduling me asked why I wanted to see the doctor.

“Because I am having symptoms of Lyme Disease.”

“Have you been diagnosed with Lyme Disease?”

“Well…no.”

“You cannot see the doctor unless you are positive for Lyme Disease.”

“But the doctor is the one who will make the diagnosis of Lyme Disease!”

I hung up with no appointment made, with ideas running through my head.

I could say I want to see him for Lupus and when the scheduler asked if I had a Lupus diagnosis I could say yes, and get in that way. Once I was in I doubted they would throw me out for lying.

A few days later I saw the doctor who tested me for Mono again because I was having Costochondritis symptoms and explained to her my difficulty. She very nicely asked her office to schedule me an appointment and I was in, on February 21st!

So of course, just like the car who doesn’t make the weird sound when you take it to the mechanic, my extreme fatigue has gone away.

Having no symptoms of Lyme or anything now, I feel it would be very difficult to get this doctor to test me for Lyme. I don’t want to look ridiculous.

So I’m seriously considering canceling my appointment. I waited a long time for it but right now I do not consider myself physically ill and feel this would be a waste of money and time for both of us.

What would you do? Would you see a new doctor without any symptoms?

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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?

 

 

Thankful

Inspired by Mama Kat’s Writer’s Workshop.

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.

 

 

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