A.S. Face 0178: Jennifer Lisewski

Hi My name is Jennifer Lisewski and I’m 38 years old!

I live in Kitchener Ontario in Canada!

This is my story of being a face with A.S.!

When I was 16 years old I noticed pain within my neck and shoulders!! I would get so bad headaches from the pain!! Doctors would tell me it was nothing or I was depressed!! On top I fought horrible fatigue!! Just getting through a school day took all out of me! My mom was ill and diagnosed with A.S. about 3 years after my first signs of A.S appeared!! Doctors did not believe she had ankylosing as it was a mans disease so did not treat her for it!! While my mom fought for a diagnoses and how to deal with symptoms,I fought with my own symptoms plus help her on days she was too sore and stiff or too fatigued to do anything!!

At 20 years old I married my husband!! He know of the pain and fatigue I dealt with and as time went on and it got worse he just viewed me as lazy!! I tried to work full time but overwhelmed by the pain and fatigue!! Other joints were hurting such as my knees and my hips!! My knees hurt as a child but everyone said it was just growing pains…. I still have the same pain in my knees to this day!!

I had a healthy baby boy at 22 years old and the pain went away while pregnant,symptoms started to return with in six months after birth!! At age 26 I had another healthy boy with no pain during pregnancy! With in a few months pain returned as well as stomach issues!! I got diagnosed with everything to postpartum depression to being told to lose weight and all problems would go away!! I left every doctors appointment feeling like I was crazy and left with another prescription of anti depressants in hand!

At 29 years old on Feb 14th, 2002 my mom lost her battle!! Before she passed she told me to not to give up on a diagnoses and to fight for better treatment then she received! Her death certificate reads: End stages of ankylosing spondilitis!! She fought so many lung infections after being diagnosed with A.S. by a specialist in Toronto but her hometown family doctors remained uneducated and refused to believe her diagnoses!! By the end of her battle her spine was fused,she had heart issues on top of that! Her last day she slipped in to coma and her caring doctors informed us she signed a DNR(Do Not Resuscitate Order)! She understood earlier on that if anything happened in event of heart attack during any of her hospital stays that they would have to break her back to work on her!! My mother also voiced her worry about how my husband was treating me! He knew i could not work full time and i stayed home with our children! He took away all my access to finances,kept me in the dark about the bank account and bills! He saw it as his money,his house etc because i did not work! If I wanted anything i had to ask,even if it was for a cup of coffee at a coffee shop,on top he would ask me why i thought i !! I was worth it being bought for me!! He used the kids to stop me leaving by saying “you cant work full time to support them,you are horrible mother,you can not provide for them! You leave but they will stay with me.” My mother heard him so many times over the years say I was worthless, I was faking and so on!! She wanted better for me!

I was sent to a rhumdolgist who disputed that my mother had A.S. as it is a mans disease!! He even went as far as saying”I wish she was alive to prove she did not have it!! Who diagnosed her?” I said the name of her diagnosing doctor which lead him to shock as this doctor was once his partner before he moved on to Toronto,Ont. To get from him” well he is a good doctor but find it hard to agree with his diagnoses!”

Early 2008, I went to a Nurse Practitioner who took over my health care!! She once again handed me a prescription for antidepressants!! I handed it back to her and said ” No not this time!! Why give me Antidepressants if pain is my issue?” She claimed I have Fibromyalgia!! I said “Prove i dont have Ankylosing Spondilitis!” She finally agreed to send me to a Specialist in London, Ontario. Finally after along wait to get in and see this specialist,my appointment finally arrived! In walked this young female and my first thought was”I am screwed she will knowing nothing about Ankylosing!” We sat down and after a length question and answer period on symptoms and family history, she said she wanted to run blood test for the HLA-2B7 gene as well run an contrasting MRI!! We did those test over the next few months!! During the wait in December 2009 I told my husband we were through! Our boys ages 14 and 10 had come to me asking me to leave their father as they were tired of how abusive he was to all 3 of us!! In February 2010 I received a call from the Specialist saying….” I have proof that you have Ankylosing Spondilitis! All i could do was cry, finally a diagnoses that i was not crazy!! In July 2010 I moved away with my two boys,I work part time and dont make much money!! I have since been on many medicines….Naproxen, Methatrexate, Enbrel, Humira and Remicade to name a few!! I either ended up with other side effects or no relief with them!! Remicade I fought constant infections, my hair was falling out!! I have had no luck with medication! Despite them i still have high pain, fatigue and stiffness worsening! Facial rashes before high fatigue day, bowel issues still dealing with diagnoses, lung issues such as asthma, lung capacity dropping and the list goes on!! I was told to go on sick leave but can not afford to do so! Walking away from my marriage I never received anything from the martial home, pensions etc. I had to declare bankruptcy due to my ex convincing me for the last 5 years of marriage he was not making enough money so we had to live off my credit! I found out later he made over sixty thousand every year,what he did with that money he will not say!!

In September 2011, I went to court against my ex! I have custody of the boys who are 16 and 12 and they laid terms on their father for visits!! The judge came down hard on me for moving to a bigger city!! She did not care that I moved from a small town who could not deal with my health and all health care was 25 to 30 minutes away!! She did not want to hear about my health at all or the abuse he inflicted on myself and his children! All she cared was i moved 45 minutes away to a bigger town!! My lawyer was legal aide so there was no fight on behalf!! I left the court room with custody but battered and belittled for a move that would help keep me as their mother as long as i can!!

In January 2011 I reunited with a classmate from high school for coffee,we sat for hours talking from everything from failed relationships to my health! Upon leaving we hugged!! He text me before i reached home half a block away saying”Supper with me tomorrow night please?” We went for supper and have been inseparable since! We moved in together in summer 2011! He knows the journey is not going to be easy! He knows I wont be rich! He knows I have days I cant go to work and when I call him at work and say”Im in pain and so fatigued!” He says” Honey stay home in bed i will grab few extra hours here! Your more important to me!” I know he loves me and takes part in all appointments,cares for me when I am sick and reminds me he doesnt see me as damaged or worthless he sees me as the woman he loves and has waited for a life time for and the only importance to him is i love him!! I say “what about when I am in a wheel chair? ” Sean says” then im the guy who guides you safely around in that chair!” When I am frustrated and want to give up he is my rock, falling asleep in his arms makes a difference! He is apart of my journey by choice and I am thankful to have him! His love and support are apart of helping me cope with all this disease and its affects that I can not even make sense out of!! Sean wants a better life for me but goes through and sees the frustrations having this disease causes! I want to work full time and not have pain worsen due to work, I want to educate( I gave up high school to look after my mom) myself to be better but instead i struggle at a grocery store job that a simple 4 hour shift does me in, a job with no disability benefits!! He knows I cant afford sick leave because of the  wait times and the fight with Ontario Disability!  Last visit the doctor laid it out…..continue how you are you will be in a wheel chair sooner then later!! He knows I am frustrated because people look at me and go”you look fine what is your problem?’ The struggles of work who do not follow doctors orders and notes!! The frustration when people say “Be positive!” When I feel all hope is sliding away and I can not function normal or days even getting out of bed making a pot of coffee fatigues me and does me in for the rest of the day!! It is hard to be positive when no end is in sight!! I just wish people would learn how this disease affects the person with it but affects their every day life and relationships!!! Educate,educate,educate!!!

Thank You, Jennifer Lisewski

”Damaged People are Dangerous. They know they can survive!”

Quote read in story by another A.S. fighter!!

Kitchener Ontario in Canada!

12 Responses to “A.S. Face 0178: Jennifer Lisewski”

  1. what an absolute amazing story u sound as though u have found a true gentleman. I have to work full time and it is causing problems for me also. But can’t get disability in the UK just keep getting turned down. Good luck for the future xxx

    • thank you!! My fight has been tough and Sean is my rock!! I was taught for years I am damaged but he is trying to teach me I am not!! I been taught I deserve nothing,he tries to teach me I deserve love and respect!! My ex later admitted he saw me as useless and pissed him off he had to carry the weight of bills! He always said if I left he will ensure I have nothing,he did make sure of that but he never counted on a man Like Sean taking me in his arms and giving me love!! Sean reminds me daily that i am not alone in this fight, all i have to do is open my eyes and reach out,take his hand and realize he is by my side!! Song BESIDE YOU sung by MARIANAS TRENCH describes him and his love totally!!
      I wish you luck on your fight with disability,it is so frustrating they cant see the pain you are in and the damage being caused!

  2. Wow,
    What a story,my father was very abusive like your ex.I’m just up the road from you,Mississauga.I am so luck,my doctors are all world class.I relate to you on many points.Glad you found someone special,so did I.

    • Thank you for your message!!
      Im glad you found someone special,they take a brave step being with us! But the wonderful thing is they picked us!!
      My doctor in London is awesome and takes any steps to help even with letters for court,but the judge didnt want to hear much and my lawyer decided not to present any of her letters!!

  3. I cannot fathum – HOW many people have this A.S. disease….I remember your mother – Jen…and I’m so sorry. I have empathy for you – for trying to be so brave…you definitely are a survivor! I wish other people could read this….and understand. To mis-diagnosed for so long…If you NEED anything, JEnn and I mean anything – clothes for your growing boys…shoes??? my son is 14 years old, and growing like a bad weed!….if I can help out there in that department so that your boys don’t have to go without – PLEASE….LET ME KNOW!……hugs sweet you…I didn’t know about highschool, I thought you completed it just like me? You will forever be on my mind Jenn….forever……………

  4. As a female I can relate to much of what you are saying. You must be a very strong woman. In the beginning of your story I was wondering why you added exclamation marks to all your sentences. By the end I actually wanted to add more for you!! Stay strong -it sounds like you have a great partner now!

  5. Thank You Ang for taking the time to read and learn!! You are an awesome friend and i love you for it!!
    Sean has been very patient with trying to unravel what I was taught to believe about myself!!!
    He loves me for me and takes part in fighting this disease!! When I was on remicade in our first weeks of dating,I had a treatment scheduled 8:30am! My door buzzer went off and when I answered I was shocked it was Sean!!
    He came to the door and I asked ” Why are you not at work?” He said ” I called in to work and told them I had something important to do?” I said”What is so important to miss work?” his reply ” Whats important that a person I love very much has to endure another treatment that makes her sick and I want to be there to hold your hand !! I want to ensure your home safe and get rest!”
    I never had been put first!! He sat holding my hand two hours,took me out for breakfast and encouraged me to eat,took me home and held me while I slept!! He has shown me more love and compassion then any one!!
    I ask him”why are you like this with me?” His answer ” Because you are the one I want to be like this with,you are the one I love,you are my true love,my heart!” He always tells me”if you dated me in high school I wouldnt have treated you right!! But I knew I loved you then and didnt step up and tell you but I have you now and make sure you have the respect and love you deserve!”
    He tells me often I am his true love and he has waited so long for me!!
    He is mine as well and I cant imagine what life I have left without him!!! Everything about him feels right!!!

  6. Dear Jennifer,
    Thank you so much for sharing your story with us. I am happy that you have found someone who loves you enough to be at your side, that is the greatest gift anyone can receive. Thank you for sharing your mother with us and I look forward to adding her story also.
    Sincerely Cookie

  7. Love you Jen…..anything i can do let me know!!!! Old friends…..but true!!!

  8. Hey jenn, I read ur post, I know ur pain is genuine, your mom loved life, don’t give up, life is worth living….. love aunt marg w.

  9. Sam I seem to get turned down for everything here as well! Disablity turned me down too!

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