A.S. Face 0195: Patricia White Lisewski

Hi I am A.S. Face # 0178, Jennifer Lisewski

As I wrote in my story my mother fought A.S. as well!

Here is the story of her struggle!!!

Patricia White Lisewski 1946-2002

My mom Patricia was born in 1946,she was the oldest of 12 children! She was born in Port Colborne, Ontario at the home of her grandparents! She was left in the care of her grandparents until she was 8 years old! Her aunt wanted to adopt her and her parents came back to get her! She was then raised in the Kitchener area! Her childhood was not easy due to having so many siblings. Her parents could not afford to care for them properly so she and a few other siblings were then sent to an orphanage for awhile. She was forced then to quit school in grade 5 to stay home and help raise and care for some of her younger siblings! As a teen she was then made to go work to help pay bills! At this point she ended up with rheumatic fever. She was forced to still go to work despite being sick! From being so sick she lost all of her hair! It was then discovered she had a heart murmur!

In 1970 she married my dad and 1971 my brother was born without any problems! She decided to have one more child….me!! In 1973 during my birth she had a massive heart attack! They discovered she had issues with both of her valves in her heart! A few years later she then had to have heart surgery and had artificial valves put in her heart! I remember leaving for school in the morning and was always worried I would find my mom in her bed passed away!! I would lean close to hear her valves in her heart as they sounded like a clicking from a clock!! A few years after her surgery she complained of back pain!!

Her favorite activity was horse back riding which she became in to much pain to do! When she spoke to the doctors on this they explained it away with “it was caused by your chest being spread open for heart surgery!” At 37,she was in pain and everyday chores became hard for her! She tired easy,pain became more and more! Finally,she was sent to a Specialist in Toronto,Ontario! After examination he was sure she had Ankylosing Spondilitis! He did some test to follow as well as Xrays! Suspicion was confirmed! He sent reports back to her family doctor in small town of Listowel,Ontario!

The doctors had no idea what Ankylosing Spondilitis was and when they educated a bit on it they decided diagnoses was INCORRECT as it was a MAN’S Disease!! She battled phenomenon many,many times over the years! When I was in high school she was hospitalized many times due to it! Her pain became worse,her back started to hunch,pain in her feet and stomach issues arised,yet doctors in the small town still did not believe she had this man’s disease!  She was put on so many different medicines for pain as well as her heart medicines and blood thinners!  It got to the point she had issues sleeping due to the pain and she did sleep it was mostly sitting up in her recliner.

There were days she was so sick I had to stay home from high school to care for! Between caring for my mom and my back pain and fatigue school became lost! In 1992 she was sent to London Hospital to see why her neck was taking such a curve to it! Her head was almost laying on her chest! They discovered a small break in her neck that happened years back(an altercation from a selfish,self centered sister who was angry at her and hit her in the back of with a baby gate! The doctors were able to give a time frame the break happened, as it ended up in court so they knew the date!) Doctors in London did discover her diagnoses of Ankylosing given years earlier was CORRECT but to late!

They decided to put a Halo on her and try to stretch the neck with weights at the end of the halo. She spent months in traction to try to fix the neck! Sadly, it did not work and they decided a metal rod might help! Surgery could not happen as her heart would not be able to stand it and she would not come out of the O.R. if she did! She went home and tried to live life best she could! Pain got worse,morphine was added to her daily medication! Her spine deteriorated more and the hunched she got! Eating and breathing were difficult as everything was being compressed! She was a grandma of 3!

My two boys she was very very close too! In February 2002 we had a gathering for my dad’s birthday! Her legs were so swollen she could not get in their pick up truck so we took her home in our car which was lower and easier to get in too! Dad bought a pick up due to any long distance walking she could not do and could not see in front of her so we guided her in a wheelchair! Anywhere we went people stared and being a mouth piece I would walk up and simply say to that person “Take a good look and pray its never you or someone you love!” I use to make her so mad doing that but people can be so ignorant and rude! My boys being small would take grandmas hand in a restaurant and guide her to the washroom, it should have been the other way around but they understood grandma needed help and was fragile! She always said “I feel bad they have me as a grandma as I cant hold and rock them!” My reply was”They are enriched because you are their grandma! They learned from a early age on that a person with a disability is just as valuable as a person without! They learn without judgement! It takes more then just rocking and holding them to be a grandma and you have fulfilled that!” Simple fact is she would have died to keep both those boys safe!

We forced her after the birthday party to go to her doctor,sixth sense she went with a bag packed. He put her in the hospital right away and treated her to get the fluid off!! One night I went up to visit and she informed me we were to pick her up the next morning as she was going home! The hospital was to call day before so I could rearrange my work schedule but yet no call! I spoke to a nurse and she informed me the doctor did not release her she was signing herself out! My dad picked her up and bought her home the following day! She seemed fine and went for a nap! Dad told her he was going to town to get some stuff the doctor told her to get for a low sodium diet,handed her the cordless phone and left! Couple hours later he came home,the phone was on the floor and mom in her chair! She was confused and didnt make sense! Dad panicked and called me instead of 911! He finally got her to the hospital with the help of my now ex husband! Overnight she slid in to coma.

The next morning Feb 14,2002 I left the hospital to go check on her pets! To arrive to my parents home and phone ringing! I answered the phone and it was my aunt ” Jenn your mom died not long after you left!” It was a blur! It was like losing a child for me! I spent so long looking after her,it was like we switched roles in life! The corner put on her death certificate: End stages and complications from Ankylosing Spondilitis. One of her last conversations with me before dying was she wanted me to leave my abusive husband and to keep fighting for a diagnoses! She always felt I had the same as her! She said” Don’t give up and don’t take a simple answer! Push them and don’t allow them to do this to you as they did to me!” I was diagnosed with MRI proving I have A.S. in 2010! I left my abusive husband and have met the love of my life who accepts me for me and my health issues!! Her last conversation with my dad was ” I know I am dying and Im not going to see my boys grow up!”

My dad said” Pat you will see them,you will be with them always as their guardian angel!’ Two weeks after her passing my youngest who was just turning three was laying on my bed! His face light up and he pointed to the corner and said” oh I love her and miss her!” I go “who?” He goes “her my grandma! Her back no hurts she is standing up!” She use to tickle him under his chin as I changed his diaper! Weeks after I could hear him laughing in his sleep! I would go check on him and he would be asleep laughing and squirming as he did when grandma tickled him! I woke him one night and he goes ” Mommy put me back to bed so I can play with grandma!” I believe she is with her boys! I believe she came to her grand son after death! I believe she needed them as much as they needed her! I believe she is with them to this day! The boys are now 16 and 12 and still have items given to them as babies they cherish! I believe she would be smiling that I have a real man who loves me for me with all of his heart as I love him!!

February 14, 2012 it will be 10 years since her passing!!!

Thank You!!! From A.S. Face #0178-Jennifer Lisewski

Port Colborne, Ontario Canada

7 Responses to “A.S. Face 0195: Patricia White Lisewski”

  1. ARGH! I was sent away from UCSF due to the fact that I am HLAB12 negative and that it is a man’s disease! I hate to hear that! You think we would have made more progress. That is why it is super important that you shared this! Thanks for sharing her story.

  2. Thank you, kind loving daughter.

  3. Dearest Jenn,
    Thank you so much for sharing your mother’s story. It is her story that makes me and others work so hard to raise awareness of Ankylosing Spondylitis. Today was a day I was struggling with in my quest in raising awareness. I appreciate you reminding me that there is still work to be done.
    Sincerely Cookie

    • Cookie,its people like u who work so hard to put our stories out there! If one of my kids have it or one day one of their children have it then i have hopes more will be educated,more understanding to help them cope! It seems for people like us,there is no help and no care!

      • Dear Jennifer,
        I may work hard putting these stories together, but it is all of you that make this possible. One day…everything we all have worked and wished for will become a reality.
        Thank you so much.
        Sincerely Cookie

  4. Thank you for sharing your story. It sounds like your mother was a very strong woman. I am sorry for your loss yet am also glad your mother no longer has to suffer through all the pain. I was diagnosed with AS in April of 2007 and I lost my mother to breast cancer in September of 2007. I did not have to care for my mother as long as you did but I was her caretaker long enough to understand a little bit of what you may have felt after losing your mother. It hurts. You want to be happy for them because their suffering has ended yet you are left with a hole in your heart because someone who was such a big part of your life is no longer there to love & care for. Your daily schedule is a constant reminder of what is missing.

    Congratulations on finding a man who loves you and treats you the way your mother knew you should be treated.

    Thank you again for sharing your story. I wish you & your family all the best.

  5. Jenn I’ve read yer story numerous times,,, very heart wrenching yet very very touching,, I Hope & Pray they find a cure for your illness,, plz do not ever hesitate to ask anything of me if you ever are in need,, I won’t be too far away if I can help you in anyway,,, this story makes me cry,,, You are a Very Blessed Girl to have found Love finally,, in Sean,,, I Wish You nothing but the Best on yer venture with Life,,,,
    Luv & Laughter Always
    Your Friend Linda xo 🙂

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