My Mom & Scleroderma

>> Apr 17, 2009

I wanted to share my experiences with scleroderma but didn't want to post it fully in the Mother May I? forums. I want the forums and the challenge to be fun and positive. So I thought I'd share my story here for those that would like to know a little more about how this affected my life.

I'm by no means an expert on this disease I will just start by sharing my relationship with the disease and give you links to read more of the medical expertise language if you choose. Given the age I was, I also can not attest to the accuracy of timelines or some facts. These are the events and my experiences as I remember them.


I remember at an early age my mom started having difficulties holding things. We started replacing our drinking glasses with mugs and even those needed to be made of heavier glass. I remember her telling me how the heavier glass helped her feel when she was about to drop the glass, so she could try to catch it. At first it was just an annoyance, then my mom decided to look for help. She went to a doctor thinking she had carpal tunnel syndrome. They tested for that, said she did have carpal tunnel and Raynaud's. This was said with a "ok that's that" They wanted to do surgery on the carpal tunnel and treat the Raynaud's. Before being able to take all this in, she found a lump in her hand. My mother's hands by now had become an unusual texture and looked much like plastic. I remember thinking they were beautiful, having no idea it wasn't how hands were suppose to look. I remember often I would unconsciously rub her hands if we were sitting near each other watching television or such.

My mother soon found a lump in her hand. It started hurting and prohibited her from some daily life activities. She went to see her doctor and they schedule surgery to have it removed and a biopsy done. My mother told me he showed her what he took out of her hand. I remember her describing it as a pearl, they had no idea what it was at the time (this being decades ago). The doctor asked if he could send her records out to other doctors for opinions on possible causes.

This took a few months.. and a few more lumps. They began to form almost as if overnight. I remember the day she had a consultation with the doctor. It was cold, I was cheering for our middle school football team. It was an away game. She came to the school to pick me up, and she came inside. She even walked me to my locker. She never came inside. She asked me if I wanted my friend to stay over. She rarely did that, she never cared if they did but she rarely instigated them coming over. My mother and I have one common flaw. We were never capable of avoiding topics. We try because often social decorum often requires the verbal dance. But my mother and I are horrible at it. Rather than playing the game and pretending there wasn't an underlying tone to our conversation, I just asked "What did he say?" In just four words the game changed, I had no idea at the time what I was asking in just four words. My mother just stated factually they had a diagnosis, Scleroderma. She commented at least there was an answer. Being 13, and my mother's daughter, I asked "Are you going to die?" My mom's response was a blur.. I only recall the first word "Eventually..." What followed that was a barrage of facts, statistics and statements about mortality in general. She didn't hug me, she didn't touch me.. she knew I'd breakdown if she did. Instead said she'd wait for me in the car. My friend walked up a few moments later laughing and enjoying the after game excitement. I remember her laugh, how blonde her hair was, our uniforms.. and how with one look she stopped laughing and hugged me. I don't recall her asking or caring what was the matter, and I don't recall volunteering any information. We went back to my house and acted as if that moment didn't happen.

For ten years much of our house pretended there was nothing wrong. My mother had several surgeries to take these 'lumps' out of her hands. The surgeries became a way of life. Not warning signs, not reminders. They were just events that happened and required someone to drive her to and from the outpatient facility. It was hard on her; I remember her crying to me once how upset she was having to through this so much that the hospital personnel knew her. Not just new her name, but knew [i]her[/i]. I remember a movie that came out called [u]For Hope[/u], it is about Bob Saget's sister who was afflicted with this disease. It's a different form than my mother had, my mother did not have the disfiguration as the main character in the movie does. But my mother wanted us to watch this movie. My brother and I did not want to see it. We were young and I think it was our way of avoiding. To this day, I have never watched the movie. I've seen clips but never watched it. As I said, in these ten years we pretended. We watched her go to surgery after surgery, and take a cocktail of medication each day, still we ignored what was coming. We even pretended my mother’s heart "episode" on Thanksgiving of 1992 was unrelated. She got a pace maker and we had turkey in her hospital room.

On mother’s day 1998, we stopped pretending. My mother had a heart attack. In the ten years we pretended everything was going to be ok, the disease was silently attacking every internal organ with the same speed it formed lumps in her hands. Essentially she spent the last 5 months of her life in a hospital, aside from a day pass to attend her granddaughter’s first birthday. There were a few weeks in August that she came home. They were hard on everyone. Hard on her not being able to be the energetic person she was, hard on us not being able to stop this evil. It was difficult for her to walk or talk for any length of time. When she went back in to the hospital, we all knew there was no pretending. We knew it was the end. The doctor’s informed us she was not qualified to be on the transplant list because her body had succumbed to the disease. We visited. It is a surreal feeling only one that has gone through this can understand, the oddity of standing next to the bed of a dying loved one and discussing trivial things like the view out the window (which was a parking garage). But as I mentioned earlier, my mother and I have one common virtue. We were never capable of avoiding topics.

We talked about what it’s like knowing you are going to die; how to be a good mom to my eleven month old son. We talked about how to handle my dad and his affairs. What she wanted to happen when she was gone, my grandmother, my brother, my niece. We talked about where she wanted her ashes kept and what we were going to do for a memorial service. We talked about my potential and that I better live up to it. I asked her if I should have lied and said the view out the window was a beautiful garden in full bloom. (she laughed, said no, and told me I was never a good liar anyway) Then I told her not to worry I’d make sure everything was ok.
Those were the last moments we had. She died the following day with my dad by her side. She was 48.

7 comments:

Neala n Dave April 17, 2009  

Wow Tami. I never heard the whole story. Glad I read it at home....made me tear up. I do remember the day you told me she died. I remember going to a park near the Potomac River and thinking.

Linda April 17, 2009  

Dear Tami, Thank you for sharing your story. It is heartbreaking to know that your Mom died so young, but even more so that you lived through 10 years or more waiting for it to happen. How wonderful that you did have a good talk and she was able to let you know what she expected of you. What a beautiful woman she must have been.

Gab,  April 19, 2009  

OMG Tami, your mum sounds just amazing. I'm so sorry for your loss. She sounds so remarkable

Jill April 19, 2009  

Jill (caitsmomma) from BG's...

How sad! This must have been so very hard for you and your mom must be so very proud of you.

I too have an auto immune disorder. I have Mixed Connective Tissue Disease. Me wearing the shoe your mom wore can tell you that she probably worried silently about your welfare and hoped everyone pretended the illness was mild until it whipped her out. I worry daily that I don't do enough for my daughter but deep down inside I know that she thinks I am the best mom ever. She tells me so.

It's a hard thing to do... your mom was lucky to have you take care of her. I hope my daughter takes care of me when my body fails me... it's inevitable. There are two roads a child can travel... the one where they can resent (which is one that every sick parent fears) or the one where the child embraces their sick parent and cares for them with love and respect.

aprilrhyno April 19, 2009  

Tami, I am so sorry for your loss. Your story has brought tears to my eyes. I am sure your mom would be very proud of you today. she sounded like an amazingly strong woman. Thank you for sharing your story.

Sterling and Cori Anne June 04, 2009  

I have Scleroderma too. I liked hearing your point of view being the daughter and your mother having Scleroderma. I have a son and often wonder about how he will deal with my having this illness. I'm grateful you decided to share your story. Thanks.

Anonymous,  December 28, 2009  

Tami -

This is Toni - Teresa's youngest sister (Teresa did the painting for your mom when they were in high school).

I can't imagine the pain and heartache your mom, you and and your family went through and I'm so sorry you all had to go through that. I imagine the pain and sense of loss is still there when you think of your mom, but hopefully, your memories of her also bring smiles.

What you wrote is a tribute to your mom ... to her strength and to her life. She must have been a heck of a woman to have gone through all of that and maintained her sense of humor.

I'm sure your mom would be proud of you for writing of her with such eloquence and love. You did her proud.

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