Archive for the The Blogs By Kelly Category

Guilty, Until Proven Innocent By Kelly

Posted in The Blogs By Kelly, Week 02: Guilt on July 18, 2011 by Cookie Has A.S.

On June 6, 2011 I faced just one of many judgement days.  Most people are only judged one time, before God when they pass.  However, people who live with chronic illnesses are forced to prove themselves on a daily basis.  When I was given my AS diagnosis I learned from that day on that I was always going to be guilty, unless I was able to prove my innocence.

You see, on that day in June I woke up in the middle of the night in excruciating pain.  Now I live with chronic daily pain, so when I wake up in the middle of the night because of acute pain I get nervous.  This particular night the pain was so severe that I knew I couldn’t just deal with it, so after debating with myself for about an hour I made the decision to go to the ER.  When I arrived at the ER there wasn’t another person there, so I was immediately taken back and put in a room.  My blood pressure was sky-high and the dr told me they could not give me anything for my pain until I went for a CT scan.  For the record, it is extremely hard to lay flat and still while you are in the worst pain of your life.  I never thought I would get through that scan, but I did, and when they got me back to my room I asked for something to get rid of the pain.  I was crying, vomiting, having hot and cold flashes, and I just knew I was passing a kidney stone.  The dr gave me something then left.  Well that something was not enough and my pain didn’t wane at all.  Instead it seemed to get worse, and when I asked for a different medication I was told no.  My husband then tried to go to bat for me, and the dr decided to tell him no as well.  She told him that she knew I was here only to get drugs.  Yep.  Apparently this dr had figured me out.  She had known me for all of 5 minutes and she already knew that I was a drug addict.  I purposely woke my two preschool children up at 3 in the morning, woke up my father so he could watch my kids and then forced my husband to rush me to the ER because I just HAD to have drugs.  Why is it that I am automatically guilty of a crime because I can’t handle the pain my body likes to put me through?  Would this dr have acted the same way if I had been her daughter?  What if I had never been given a diagnosis, and didnt take medications at all, would I still be drug seeking?

Luckily for me the pain started to subside on its own, and I knew the second I passed that kidney stone.  I wasnt quite back to normal pain levels, but close enough, so I asked to be discharged.  The nurse told me that the scan was normal, and that there was no evidence of a kidney stone.  The dr did not say another word to me, so I left and life went on, until yesterday when I picked up my CT scan report from that ER visit.  When I opened the envelope I almost began crying.  Right there on the paper it said there were several large stones in each kidney, and that I also had a large umbilical hernia, and the biggest shocker was that I had fatty infiltration of the liver.  I had to read that report about 5 times before it sank in.  This ER doctor sent me home making me and my husband believe that there was nothing wrong with me, that the pain I had was probably from my AS, when in reality I did have stones that were passing, and my liver was in bad shape.  I have never once been told my liver was not healthy.  How in the world can a dr take someone else’s life in their hands?  Had I not picked that report up who knows how long it would have taken for me to find out that I had fatty liver?  How many stones would I have passed?  What ifs continue to float in my head and they are all scary. Instead of that dr upholding her oath to help others, she judged me.  Not only did she peg me as a drug seeker, she also did nothing to help me get better.  Her job should have been to tell me the results of the scan and to give me steps for getting better.  She should have been compassionate, she should have tried to walk in my shoes for those 5 minutes.  But that is not what she did.  Instead she added another cut to my soul.

I will have this disease until I die.  It is lifelong, chronic, painful, and it has no cure.  If you take your sick pet to the vet’s office they will immediately give your animal something to make them comfortable.  That day I was not even given the same treatment a dog would have been given.  Where in the Hippocratic oath does it say it is ok for doctors to pass judgement on their patients?  Where does it say that it is ok to assume the person sitting in front of you writhing in pain is faking it?  Why do I have to prove to every dr that doesn’t know me that this disease is real, as is the pain.  I did not ask for this life, for this disease and its complications.  All I have ever asked as an AS patient is that my doctor’s do their best to make my life as comfortable as possible.  Sadly they have mostly done the opposite.  I am a slave to doctors now, and I will always be.  My acute pain may come and go, but my chronic pain will be with me every minute of every day, and I should NOT be punished for being sick.  If I walked into that ER and told them I had cancer I would have been treated differently.  As a patient all I ask is that medical professionals treat me the way they would want to be treated.  I want the same treatment they would give their own daughter, mother or spouse.  I will try my best to suck it up and deal with the symptoms to the best of my ability, but if I have to go to the ER because it becomes too much, then please don’t judge me.  Dont assume you know what my life is like, or that you know who I am.  I am only guilty of having a disease.  I am only guilty of being selfish enough to not want to hurt anymore.  If you want to judge me because I choose to take medications that take my pain away and allow me to live a somewhat normal life, then that is your problem not mine.  I will never be ashamed or feel guilty because I have to take medications to stay active.  The medical profession has made so many leaps and bounds when it comes to therapies and medications and tests, but to me, it seems like they are all stuck in the dark ages, because very few actually act like people.  Very few treat their patients the way they should be treated.  Instead those of us who are sick have become bothersome, annoying, and something that is cutting into their lunch break.  Let’s just say that I wont be going to the ER ever again….


Tell Me The Truth By Kelly

Posted in The Blogs By Kelly, Week 01: Patient Activist on July 11, 2011 by Cookie Has A.S.

My entire life I have been real; blunt, honest, to the point.  I never sugar coated anything because I always wanted the truth from my friends, so I made sure to give them the same treatment I wished for.  Maybe it was a little naïve on my part, but I have just always assumed that if you were my friend then you accepted and loved me the way I was.  In other words my friends were used to me telling them they had pepper in their teeth, and in general I was always thanked for letting them know.  If you got your feelings hurt because I pointed out something I thought you should know it automatically put you in the foe category.

Yet, as I have aged this dynamic has shifted a bit.  Three months ago had you and I met, and begun talking, I would have just known fate had thrown you in my life for some reason, and that you would be here until that purpose was fulfilled, or until we grew apart, since life tends to do that to friends.  Several times over this past six months I have grown into my own a bit, learning for myself what it is that I want to accomplish on this earth, learning to be the mom and wife I want to be.  Mainly it has been this amazing ride where I found out that all those years of me being bluntly honest were not spent in vain.  All those “friends” I lost because I was too straight forward was not for nothing.  All those years of me putting my foot in my mouth turned out to be great practice for being a Patient Activist.

The friends I have collected and treasured over the years have played a large role in my life as a PA.  The real friends stick by you and encourage you through honesty and integrity.  They stand tall for you and they never ever give up on you.  Real friends, TRUE friends never get mad at you for being boldly blunt.  It turns out that when your goals involve wanting to teach the world about the disease that afflicts you and your friends, modesty flies out the window, and honesty becomes a key player.   If I was shy, how could I tell you all those symptoms that make even me blush, or how could I ask those questions that embarrassed me to even think about asking, and most importantly how could I be honest, how could I be ME, an AS Activist, if I could not be real?  So yeah, the answer is, I couldn’t be me without the amazing ability I have to be able to share with the world every aspect of my personal life……..AS is just a disease that makes me who I am, a Person. Blunt, loud, awkward, silly, dark, passionate, caring, REAL. I wont apologize for being me. Nope….

Kelly Christal Johnston

Posted in Meet The MOWer's, The Blogs By Kelly on June 21, 2011 by Cookie Has A.S.

    Photo                  About hurtingbuthopeful

I am a mother and wife first, and a patient with Ankylosing Spondylitis second. Even though I have AS it doesn’t have me and I am very blessed. The Lord has given me so many wonderful things in my life, so the positive definitely outweighs the negative! I have a wonderful husband, who is also my soul-mate and best friend of 13 years (we got married at 19!), and two gorgeous kids. I lost my mother to breast cancer in 2000, when she was 45. I miss her so much, and to add to the loss, both my husbands parents passed away recently as well. It is hard raising two kids, while having a disability, and while not having a large family for support. I am blessed to have my father here with us, and he is a wonderful grandfather to my babies. After I was diagnosed with Ankylosing Spondylitis I felt like I had finally found my purpose on Earth…I was meant to be an AS advocate, and I take that very seriously. I hope I can not only teach the world what living with AS is about, but I hope I can help others like me deal with the toll it takes on not only our bodies, but our souls. So with this blog, I hope you can get to know me, my goals, and more about AS. Thanks for reading, and please feel free to leave feedback, good or bad!