For Mom

This is one of those blogs that might not be for everyone.  Out of respect for my family members who read this, know that it is about my Mother.

 

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Sometime in 1996 my Mom was reaching into her cash drawer at work and a metal wire pierced through the skin underneath the finger nail. It wasn't a significant injury, she doctored it on her own for sometime. But I guess it never healed and it really started bothering her. She went to a local Nurse Practitioner (Mrs. Serian) who started treating it. She went through several courses of antibiotics and ointments and pretty soon she needed something more than over the counter medicine for the pain it caused her. Soon after that the NP became a bit baffled and sent Mom to a specialist, who didn't have any other ideas. It was also around this time my Mom started getting cold hands.

We were the type of family that didn't generally go to the doctor. After my toddler stage and year in Kindergarten, I don't even remember going to a doctor until I was an adult. My Mom knew every kind of Southern remedy there was for any kind of ailment you might have. Some of them included the nastiest things you can imagine like cod liver oil, prune juice and Perapeptulem (sp? It is off the market now, some whitish liquid that came in a brown bottle). So when one of us got sick there was a standard protocol. We were quarantined to the small couch in the living room which she would cover in a sheet, nice and smooth military style, and bring in my favorite Star Wars pillow. A towel and a garbage bag inserted into a round laundry basket would be staged next to the couch for projectile vomiting. She would especially hand crush ice for our apple juice or pineapple juice, put a box fan at our feet if we were hot, start a fire if we were cold. There would be a variety of medicinal tools on the side table next to the couch including cool moist wash clothes neatly folded and placed in the special blue or green fiesta bowl, a box of tissue, the medicine spoon and whatever concoction she was feeding us, the gauze square compartment she would make and fill with VapoRub and attach to our sleep shirts with a large diaper pin. Then beside the couch would be her recliner where she kept a 24 hour vigil over us, holding our heads when we were nauseous, cooling our foreheads when we were feverish, holding our hands if we were in pain. I remember she could always create the perfect little snack for us, little peanut butter toast squares, banana slices, and that small mug of chicken soup with saltine crackers...which as recently as a few months before she passed she still swore was just canned or boxed chicken broth heated up. But I've tried that more than a few times with a variety of broth brands, and so have my siblings, and it never tastes anything like hers. She had to have done something or added something to it...or maybe it was as simple as it being served to us accompanied by her everlasting love.

By 1996, I was out of the house and on my own, so I remember my Mom telling me she had hurt her finger at work, and I remember seeing a bandage wrapped around it, but I had no idea the extent of what she was going through until we took a surprise family vacation. That is where I learned that she was on pain pills, and her fingers were turning colors, getting cold, and little black areas were forming around her wound. During vacation, but this was after I had already departed for home, she felt very ill and my father took her to the hospital. It was there she was diagnosed with Raynaud's and told she was developing gangrene. I think they treated her with some antibiotics, told her to head home immediately, and seek special care. I remember her telling me she went to the local rheumatologist in Panama City. He told her that she didn't have Raynaud's and sent her on her way (and yes I will name him, Dr. Crayton). Shortly after she ended up in the hospital in Tallahassee where she had to get part of her finger amputated and several tips removed; she had special IV treatments and hyperbaric chamber sessions. She recovered from that and seemed better for a while.

In 1993 / 1994 I was a senior in high school, and I noticed that I was getting cold in class. Specifically in Mr. Collins Physics class. My hands would turn white or purple. My friends and I just kind of laughed it off, and I thought I was just sensitive to the cold, because as soon as I went outside into the heat it went away. But that winter I remember rushing to my car and turning the heat on at full blast and sticking my fingers in the air vents because they would get so cold on the walk from school to the parking lot. I mentioned it to my mom, and told her it hurt sometimes. She asked me if I wanted to go to the doctor...I was a teenager, was I going to say yes?...I vehemently said no. And then I never mentioned it again, well until much later on when she was diagnosed with Scleroderma.

Now I wasn't living with them when all of this was going on. I had my new found freedom as a working adult and apartment with my boyfriend, so I only saw my Mom occasionally. But even if I did, I don't think she would have told me how bad she had started to feel. Her Raynaud's was getting worse.

Growing up, I never remember seeing her get down when she was ill. When one kid came home sick from school, even though we were all quarantined to the small couch, inevitably it would go around the house. My mom slowed down a bit to blow her nose or take some medicine, but she just worked through it, still cooked and cleaned and took care of all of us without missing a beat. My dad, on the other hand, would immediately go down and be in bed all week. She said she learned that from her grandmother Ish, got to work out the sickness Judy, she would say. I remember when she was pregnant with my little brother. She went into labor earlier in the day while she was out with my grandmother, came home, got ready to go to the hospital, and we were sitting in the living room waiting for my Dad to get home from work so he could take her to the hospital. She was rocking in her rocking chair, while the bug man came to spray the house. She was in labor all this time, but you could hardly tell when a contraction came. That bug guy was freaking out though, sweating, wiping his face, constantly looking up at her while he sprayed that house willing her not to have that baby while he was there. And I'm sure seeing his reaction is what encouraged all of us (my grandmother and sister) to keep her talking about having that baby, asking her how far apart her contractions were :)

Later on, apparently my Mom started having heart burn pretty bad, so bad that the over the counter stuff wasn't cutting it, so she went to a GI doctor in Panama City. She saw Dr. Tumiel; he was new in town and Polish, with a thick accent and a very interesting bedside manner. He was probably one of the luckiest things that ever happened to our family; he treated her and stayed with her until the very end.

By this time I was living in South Florida going to college. I guess she ended up having an endoscopy. The day after her endoscopy was a Saturday I think. She woke up that morning feeling okay, and my Dad went with a friend to a HAM Fest in Ft Walton while she stayed home. She had a heart attack that day, and we were lucky that right before she did she called my grandmother to tell her she wasn't feeling well. They had to shock her to get her heart to start beating again and gave her heparin on the table, but the medical staff had no idea that the day before it was discovered that she had ulcers all in her esophagus. So she started bleeding out quite rapidly. It wasn't until my Dad got there and got Dr. Tumiel involved that they knew what was going on. I got the phone call late at night, and started the nine hour drive home immediately. She was in ICU at Bay Medical. She had tubes coming out of her nose full of blood. It was rather chaotic. My parents don't believe in blood transfusions so the staff was angry. I remember a Nurse shaking me by the shoulders telling me that if I didn't go in there and convince my mom to get a blood transfusion she was going to die that day. I respect my Mother's beliefs and wishes, I always have; that was the way I was raised.

It was a terrible time, and apparently the doctors were arguing about what had actually happened to her. They all thought heart attack, but they could find no blockage, no plaque, her arteries looked fine, her cholesterol was fine? It was Dr. Tumiel the GI guy who supported her wishes and signed off on the shots of EPO in her stomach (at that time a relatively new drug that promoted red blood cell production) to build her blood count back up again. It was him that suggested it was some kind of disease like Lupus or Scleroderma, not heart disease. It took my Mom a long time to recover and be released from the hospital, she had lost a lot of blood, and there was damage to the heart.

She went back to the local rheumatologist; he said she did not have Raynaud's or Scleroderma (know that his diagnosis was despite the fact that she had already had to have part of her finger amputated). It seemed no one knew anything about Scleroderma in our small little town, except for the foreign GI doctor. Eventually my Mom's sister convinced her to travel to Atlanta where she lived to see a specialist. She did, and that is where she was officially diagnosed by a rheumatologist at Emory hospital, Dr. Waltuck. They learned that indeed she did not have heart disease, but they thought she had such a severe Raynaud's episode that it caused her to have heart attack (research now shows that Scleroderma can cause spasms of the coronary arteries similar to those experienced in the fingers with the Raynaud's Phenomenon). The doctor gave her about 4 years to live; that was in 1999.

It was only then that I brought up the fact to her for that my hands still got cold, purple, and numb too. My Mom cut me off, said she remembered and that she asked the doctor about it. My symptoms started in 93, it was now 99, so the doctors said my condition would never get any worse, that I would always just have Raynaud's in my fingers. Apparently the trend, and the belief back then, was that when you started showing signs of Raynaud's (which most Scleroderma patients did in there late 30's or early 40's) it would quickly turn into much more, into a full case of Scleroderma, like my Mom's did. So since I hadn't had any other symptoms and was very healthy and active, I was just going to have Raynaud's for my life. This was confirmed over and over again....and even in 2009 when I was showing signs of something else, I had multiple specialists tell me there was nothing more wrong with me....but that is another story.

It took a very long time for my Mom to recover from her heart attack, but she did. She also suffered a great deal as her symptoms got worse over the years. There is no cure for Scleroderma, they can only try to treat one's individual symptoms. I remember trying to look it up in the library or on the web, and there was no information. Now there are two dedicated research organizations. If she were diagnosed today her life would have been much different.
 
It has to be hard to be told you only have so much time left, and to be in constant pain. My mom tried many different treatments from vitamins and minerals, to medications, and dietary changes.  I saw this disease change her. She was still very strong on the inside, but there were some days when she developed a fragile shell of emotion and sorrow on the outside.
 
My mom and I were very close, we talked almost everyday for most of my life, even when I was away at college or on the many lengthy business trips I took. She would call me just to see how I was, or because she got one of her feelings that something was wrong (surprisingly she was very accurate), or just to tell me to lock my doors and drive safely.  She had low days, and we would talk, I think I became her non-judgmental ear back then. She could say anything to me, and I, to her. We talked openly and frankly about her death. I new her deepest fears and her most desired wishes. All this info I kept stored inside me for the right time.
 
She had many good days as well. Four years came and went, five, six, seven.... she lived to see me graduate college, become a professional, fall in love, marry the man of my dreams. She even walked down the aisle at my wedding, sturdily supported by Ivan (thank you!). She taught me how to make all of her Southern Thanksgiving dishes, well at least as well as I can learn how to make cornbread dressing from scratch when she never measured anything and her instructions included “until it looks right” or “until it smells right”. I took her on short road trips, on an adventure to Paris Island, to concerts, and a football game in New Orleans. She got to watch her grandchildren grow up and graduate high school, she attended many soccer games and award ceremonies. We spent days in the sun or on the boat at Crooked Island. She got to see her son graduate from the Police Academy and become an Officer for the PCPD; she also got to see him fall in love and become engaged to Amanda.

 Sitting in the salt water at Crooked Island

 My mother and brother

 

My Mom and I in Texas, one of her most favorite places, circa January 2006

 

My niece Sidney, sister Andrea, me, my Mom, and my paternal Grandmother Ann - 14 May 2010.

 

In 2007, I think, I decided to get mom a dog. She had always loved animals, she was known for taking in and doctoring all the strays. I've seen her help a doberman deliver pups, pull stillborns from one of our own cats, and nurse a kitten back from the brink of death. She rode horses in her youth, she would tell stories about saving up her money to go down to the stables so she could jump them. Before she got married and had children she wanted to become a Veterinarian Technician. She had had a poodle when I was very little; she loved that dog and spoke of it often. I thought it might help her to have a new little baby to mother, since she was especially good at being a Mom to all of us. I found a black toy poodle puppy, and the kids came with me to pick it up. I remember my mom opening the box...it was love at first sight, and my mom named her within a few seconds. Gigi became the mascot of the house and the most spoiled thing you could ever imagine. I have to say, it was one of my more brilliant ideas. Gigi is the fourth child in our family now.

Gigi

Over the years my Mom got worse. She was in constant pain and she developed a plethora of symptoms associated with diffuse systematic Scleroderma. Her mouth and her eyes were dry so much that it hurt or affected her swallowing; her hands were swollen so much she couldn’t close them anymore; she had painful skin ulcers; her joints were stiff and swollen which made if very hard for her to walk (resulting in multiple falls and broken bones over the years); her skin would thicken, discolor, and become itchy and crack. I remember my sister helping her put a sock on, and her hand slipped and her finger nail went right through my Mom's shin...that's how brittle she became. She developed calcinosis where these hard rock like fragments would grow under her skin, then break the skin and have to be removed. So many grew, and grew close to the bones in her arms, legs, and feet that it was very painful for her to walk or get comfortable. She had several surgeries to remove them. She had horrid digestive issues, it was hard for her to eat because her esophagus wasn't working right, she had a hard time digesting food so her body wouldn't get enough nutrients. But she always kept going, she worked through her pain. I know some days she wanted to give up, but she never did. If I could talk to her again I would thank her fiercely for enduring so much, for willing herself to live so long so she could spend time with us and make Our Lives easier.

 

The last year or so she kinda kept her distance a little, I don't think she wanted us to know quite how bad it was, but still she put on a smile, showed up to our events, and cooked....when she could. Last summer she ended up in the hospital at UAB with some heart trouble and they had to put a stint in one of her coronary arteries because it had collapsed. She was in the hospital for a long time, again fighting that balance of blood thinners to keep her stint going and trying not to bleed out because of ulcers in her stomach. Looking back she never seemed to bounce back from that hospital stay. She came home in August and was in and out of the doctors and the local hospital. On December 30, 2012 she had an episode where she felt like she was going to pass out and fell down. She was admitted to Gulf Coast hospital. She had been having a lot of trouble maintaining the right levels of magnesium, potassium and iron in her body which can affect the heart or be symptom of heart trouble. 

 

Steve and I were in Tampa visiting his parents one last time before our impending move to Pittsburgh. We got the phone call and headed back to Panama City a little early. After a few days in the hospital she seemed to rebound and was about to be released, and then she had her second heart attack right there at the hospital. If she hadn't been in there, she probably would not have survived it. They had to intubate her right away because she couldn't breathe.

 

Again, the doctors couldn't find a blockage or anything. Their theory was that she had a blood clot that caused her heart attack and had since passed through. She was on a ventilator for a day or so in the ICU, but soon she was off and alert and seemed to be getting better. And then her body just started shutting down. She stopped eating, she had edema and even though she was on Lasix it kept getting worse, and the worse it got the harder it was for her to breathe. She was having anxiety attacks and she asked for something to relax her; of course we wanted to give her whatever she wanted. They started giving her doses of Ativan to keep her calm. Soon she wanted so much Ativan that she was barely alert, so then she definitely wouldn't eat.

 

I remember my last lucid conversation with her. It was a practical one. I stayed at the hospital all day and all night, and held off her next scheduled dose of Ativan and waited for her to wake up. Steve was with me. She was alert and I told her what was going on, although I think she already knew. I told her she wasn't eating, and that we wanted to respect her wishes and keep her comfortable, but that if she didn't eat she couldn't get any better. The doctors were suggesting a feeding tube, that there was a possibility that she would get better. I told her that if she was done, I completely understood, but that if she thought she still had some more fight left in her, the feeding tube was the next step. She said she still had some fight left in her, and then she wanted her next dose of medication. Before she drifted off, I told her I loved her. She gave me her crooked smile and told me she loved me too, and Dad, and Andrea, and Ira, and Sue, and Ann, and Tommy, and Steve, and the kids....

 

The feeding tube was put in, but it didn't matter; her stomach stopped working and her kidneys too. Soon after she was moved to Hospice. It was actually a wonderful place, I admire the people that work there. It takes a special person to deal with death and sorrow every day, but they do and they provide much support to the patients and families in need. The doctor there told us they would keep Mom comfortable, and that she didn't think it would be long before she passed. We had two episodes where my Mom woke up, one right before she was moved to hospice, and the other right after she got there. She was pulling at her chest and gown and asking for help. My sister and I each had a hand and were trying to keep her from pulling things off. She kept saying help me, help me, in a little squeaky voice. Immediately my brother, husband and nephew ran from the room to look for a nurse. My sister and I tried to comfort her. We told her we were getting her medicine, it would be there right away and she would feel better. One time after she said help me, I said we are Mom...and she said no your not. That was like a dagger through my heart. Soon the nurse came and gave her medicine and she went back to sleep. We learned from the nurse that she was grabbing at her chest and trying to sit up because it felt like a great amount of pressure on her chest and it was uncomfortable to try to breath. After the last episode they increased the number of doses of Ativan and added some Morphine, and we all became clock watchers making sure each dose was on time.  Nobody wanted her to go through that again, nor did any of us want to go through it again. I think it scarred me for life, not being able to help her...even though I know we did. 

 

Family came into town, her sister, nephew, brother-n-law, cousins, friends. She lay in bed surrounded by her family who told stories, laughed and shared many memories. Everyday the doctor would say it would be soon. Her breathing became more labored; her whole torso would move when she breathed, and her breathes became farther and farther apart. Each night and day at the shift change the staff were surprised to see us still there, but there we were by her side 24 hours a day, and there was Mom still hanging on, still fighting to the bitter end.

 

Late at night on the 14^th of January, me, my husband, my sister, her husband, my brother, his fiancee, and my Dad watched my Mother take her last labored breathe, and then she started turning blue. It was emotional as you can expect but I remember thinking and saying that we did right by her, we respected her wishes, we made sure she was comfortable and not in pain.   I honestly didn't think it would be as hard as it was to lose her.  I thought I was prepared, we had been on the edge so many time before though, that I guess I didn't even see it coming.

 

We worked hard planning her memorial, picking out pictures and songs. And surprisingly all 3 of her kids got up and spoke. I knew that I was going to do this, I had thought about it many many years ago, and actually had composed what I was going to say back then. I think this was part of my own mourning process that I had experienced in 2005 after one of her bad episodes. Many people have said that her children speaking was their favorite part of the ceremony. I will quote what one man relayed to my father “Listening to your children praise their mother last night was the most wonderful display of love I have witnessed in a very long time".  This is what I said:

As many of you know, and as we have talked about today, my mother had a terrible disease. You may wonder why in this time when we are celebrating her life we continue to discuss it. Unfortunately, when you have an illness like this it consumes your everyday life. What many of you may not realize is that while she smiled and put on a happy face, and came to family get-togethers, laughed with us, was a shoulder for us to cry on, traveled to our graduations, braved the cold weather for soccer games, and continued to make home-cooked meals to sooth us when we were sick or upset...all the while a war was being waged inside her. For over a decade she was engaged in battle everyday and did her best to overcome it and shield it from us all. My mom was many things; loving, generous, caring, compassionate, courageous, fiercely protective of her family and those she loved. But if I had to pick just one thing today, one word that she exemplified, one thing that she taught me and I will strive to carry on, it would be that she embodied the meaning...no, she was the pure definition of perseverance. In 1999 she was given about 4 years to live, and while she unfortunately lost this last battle on Monday evening, I guarantee you she certainly won the war. I am comforted by the fact that she no longer suffers and I hope her strength can, and will be, an inspiration to us all.     18 January 2013

In October 2010 I was officially diagnosed with Scleroderma and shortly after, we found out the extent of my ailment, how much lung damage had already been done, and how serious it was. Telling my Mother was one of the hardest things I have ever had to do. She blamed herself, even though there was no blame to be had there. More recent findings have determined that there is a genetic link to the disease, but how would she have known, how would any of us have known, it wasn't even known back then. I hated that she blamed herself, I hated that she had so much guilt. 

As you all know I have highs and lows waiting for this surgery and worrying about the future. I still have urges to reach out and call her, confide in her, have her tell me that special something that only a Mother knows how to do to make you feel better. Part of me wishes she was still here for me to lean on, but another part of me is glad she does not have to witness what I am going through because it would be very painful for her. 

 

Know that I am not going to give up, it's not in my genes to do so. I am going to get this surgery, recover, and live life some more. Even if I am unconscious, know I am still fighting, I'm still giving Scleroderma the big F-U.

 

I won't give up....Because. She. Never. Did.

I love you Mom, and I miss you everyday.