“It takes courage to show up for life, especially
when you feel that life has not shown up for you.”- Jennism
I was born with some internal deformities. I had 2 uraturs (tubes that connect the bladder to the kidneys) connecting to one 1 of my kidneys, when the norm is to have only 1; also, 1 of my kidneys was deformed and therefore not working as it should; and my bladder was also not functioning as it should. Consequently, at 6 months, I had several surgeries to correct everything.
After that, my life consisted of: me being left with 1 and a ¼ kidneys (everyone has 2); that my 1 healthy kidney did not work 100% as it should; that I would also suffer from chronic bladder and kidney infections; that I would always have to take medications to combat those infections; that a medication that I had taken as an infant (Tetracycline) made all of my teeth black; I also had to frequently go into the hospital to have tests to see how my kidneys were functioning because of all the medications and infections; I missed a lot of school because I was sick a lot and for long periods of time; I had no bladder control so I often wet my pants; at night my mom would wake me to go to the bathroom so I wouldn’t wet my bed; and I was also overweight and chubby.
Every August I needed to go into the hospital so that tests could be run to check on the functioning of my kidneys. I was constantly having bladder infections, and these infections, coupled with the constant medication to combat these infections, was a concern for doctors because it weakened the 1 healthy kidney that I had.
Often, a short stay over the weekend for tests, usually ended up being a month, or longer stays in the hospital because I would get a kidney infection, or other infection, and these visits happened up until I was about 13. One time I even remember being in the hospital for so long that I actually went to school there!
As a child, I felt more at home in the hospital than I did outside of the hospital. That was because everyone in the hospital was there because they were sick, and that made us the same. In fact, you usually introduced yourself by your disease, and then your name. It didn’t matter that I had black teeth, because someone else usually ‘looked’ worse, like those kids who peed through a tube and into a bag attached to their pyjamas because of kidney failure; it didn’t matter that I was fat, because there were others fatter than me because they had cancer of the kidneys and their chemo made them blow up like a balloon. We were all the same because we were all sick. And this ‘sameness’ connected us. It was cool to have more pills to take than the kid beside you; or more tubes in you; or scarier tests to endure. It didn’t matter if you were thin, tall, fat, smart or had glasses … inside the hospital the only thing that mattered was what was wrong with you, and what they needed to do to fix you.
Conversely, I hated going to school. At school I was the freak. I had no friends, and was often picked on and bullied because I had black teeth and often wet my pants; I was also not athletic, and always chosen last for sports because I was slow and uncoordinated; and I was also usually behind in my studies because I missed so much school due to my frequent hospital stays. I just didn’t know how to connect to ‘normal’ kids. I really had nothing in common with them. At school I was just so lost; hopeless at coping and so very much alone, to the point that I actually looked forward to going into the hospital! So you can see why and when I started to get my self -loathing.
As I said before, I usually looked forward to going into the hospital, and I think it had a lot to do with my parent’s valiant efforts in helping to make it not so traumatic. My parents created a special ritual that we went through before each visit. First, my mom would take me to the toy store to buy a new stuffed animal to have at the hospital to hug when my parents were not there – remember that up until recently, the Hospital for Sick Children had strict visiting hours (9-3), and parents were not allowed to sleep in their child’s room. In fact, when I was in the hospital, most kids stayed in a room that held 8 other kids (called a ward). You only had a single room, or shared a room with 1 other kid, if you were really ill, or were having surgery. Then my dad would give me a bag full of dimes, so that I could go to the waiting-room lounge and use the pay phone to call him, or to call mom. I also remember my dad coming to visit me every morning before he would go to work. And he would climb the stairs (my dad likes to be athletic like that) to the 6th floor because that was the floor designated for kidney patients.
Another reason I liked the hospital, was that I felt very comfortable there. I was in the hospital so often that I knew and became friendly with the nurses, the doctors and the lab technicians because they were always the same people, and were gentle, kind, loving, and they were always friendly. I also usually saw the same kids – my real friends. It felt safe there, and I felt calm and not self-conscious.
I’m not going to lie to you, being in the hospital was scary, especially during the night when all you could hear was the whirring and clicking of the machines; I was also frequently woken up during the night to go to the washroom and to take my medications. The absolute worst part about the hospital was waking up to an empty bed beside you that had had a kid- your friend – in it the night before, but who had died during the night. I was terrified that the empty bed might one day be mine.
One time that I particularly remember was the time when I was crying in my bed, alone and with no toy to hug because it had been stolen that morning. The male night nurse appeared, and he asked me why I was crying, and I told him that I was feeling terribly alone and scared. And then the most wonderful thing happened… he introduced me to music. He told me that whenever he felt scared or alone he would listen to his music because it made him feel happy. He explained that by concentrating on the words, he could hear that the singer was talking about his feelings; he said it was like the singer knew exactly how he was feeling. So, from that night on, whenever he was on duty, he would come into my room with his tape recorder, and play me whatever he was listening to…. He loved the blues and funk, and especially Mowtown. And as we listened to the music, we discussed the lyrics – what was the artist trying to say and why that made a connection to us. And we would sing and dance. It was amazing! It instilled in me a passion for music that I still have today. I always listen to a song to try and find a connection between the lyrics and me. I listen to the lyrics, and I feel the rhythm. I allow myself to become immersed in the song, and in so doing, I forget the parts of my life that are full of trauma and bullshit; songs also help me celebrate when I am happy, or excited; and songs make me get through those times when I am filled with despair, sadness and emptiness.
I think of all the songs I know now, perhaps the one that touches me the deepest is ‘Superman’ by Five for Fighting. Part of it goes like this …
“I’m more than a bird...I’m more than a plane
More than some pretty face beside a train
It’s not easy to be me
(I am more than a fat person, more than my disease; it’s not easy struggling with ongoing and difficult efforts of trying to lose weight –and for me, even more frustrating when I do everything right, and still overweight.)
Wish that I could cry
Fall upon my knees
Find a way to lie
About a home I’ll never see
(I wish I didn’t have to work so hard to be thin. I wish I could love myself as I am and dam the world if they don’t like my size. But I am not naturally thin, and that will never change, nor will society’s disgust for fat people.)
It may sound absurd...but don’t be naive
Even heroes have the right to bleed
I may be disturbed...but won’t you concede
Even heroes have the right to dream
It’s not easy to be me”
(Even though I am a wonderful mother, wife, sister, daughter, friend, I too have wounds and needy places. Sometimes it’s so tiring to work every day at being ‘healthy’ AND fulfilling every need for every person in my life. Sometimes I cry that there is no one to hold me up emotionally, and to do things for me. I wish I could stand still and have someone take over for a while because it’s so hard being me)
At age 3, I was sick enough with my kidneys to require a hospital stay. However, my kidney doctor was not at the Hospital for Sick Children in Toronto, but rather affiliated with Sunneybrook. So, that is where I was admitted to.
This was a scary time for me – for the first time ever, I was not with sick children, but with adults! I felt desperately alone and terrified. One day, while sitting in my room and reading, a young man (his name was Mark, and he was 20) came in and we chatted. It turned out that we both shared a passion for music – he, however, was deeply passionate about guitars and the Gods who rued the world with their guitar genius. So, from that day on, and for every day of the several months that I stayed in hospital, Mark would come to my room with his guitar, and we would go to the stairwell where he taught me about guitars – the different brands, and about the strings, and about bass and regular guitars, and his favorite guitarists. Every session would begin with The Eagle’s song “Take It Easy” as Mark always said I was always so tightly wound. And we would sing to his guitar playing, and we would talk about music and lyrics, and we would write lyrics and he would set them to music. And we would sit in that stairwell until the morning hours … and he became my soul-mate. Mark saw me for me – dismissed the packaging so as to behold the contents. He accepted me as I was – I never felt ugly, or stupid, or less than with him. He truly freed my soul during our time together.
As fate would have it, I was finally released from hospital, and went home. However, I made it my mission to make it to the hospital every day thereafter so that Mark and I could continue our time together around music and guitars. And I would bring books about musical genres that we loved; and magazines about guitars; and I would bring lyrics that I had written that day; and I baked him cookies; and brought in all sorts of contraband. It continued to be magical. I was never so happy; so well adjusted; and so positive about life and my existence in it. Mark helped me to make sense of all the inconceivable events that befell me … and I tried to be everything that he needed as well.
One day as I was making my way to Marks’ room, a familiar nurse stopped me to say that Mark had died early that morning. You see, we never talked about our health issues, or why we were in the hospital, and so I never knew that he had an inoperable brain tumor. Then she handed me an envelope, inside was Marks’ guitar pic – which I still have to this day.
The nurses words hit me like the proverbial tidal wave. I grabbed onto her; and fell back against the nursing station’s mid-height desk. While I could feel the wall – cold and strong, my knees became weak and I crumpled onto the floor in a heap. My chest felt tight, and it was so hard to breath, and I felt empty and cold and sick and afraid and I started to quiver, and as I gulped in air, I was sobbing, uncontrollably, and huge, hot tears were streaming down my cheeks, and in between breaths I was screaming “NO, NO, NO, NO” . The nurse held me, like a mother holding her distraught child. And she stroked my hair and tried to calm me with “shhh, shhh, there now. It’ll all be OK sweetie”. But I knew it would not EVER be ‘OK’ . My best friend; my soul-mate; my confident; my spiritual leader; my conscience; my touch-stone; my rock; my armor against the world’s injustices; my emotional shelter; my everything was gone. And all I cold hope for at that moment was for the floor to open up so that I may fall down the rabbit hole and into Mark’s waiting arms. But that never happened because God is cruel.
While I do not remember much else about that day, I do remember trying to kill myself soon after. I was overcome by feelings of hopelessness, fear, and loneliness. I could not see my life without Mark in it, as he was the only person who saw me, accepted me, and loved all of me.
Obviously I did not die, physically anyways, but I did die emotionally. I chose to live deep into the recesses of my mind. I recoiled from the world; I rebuked advances from friends and family; and most importantly, I stopped having music in my life. I stopped listening to music; I stopped buying records; I stopped reading about musical genres and guitar legends; and I stopped writing lyrics. If Mark was gone from my life, than I wanted a life that would be devoid of everything that reminded me of him , of us, and of our time together in the hospital stairwell. And so, I existed in this catatonic-like state for two years; sitting endlessly in my room, holding his guitar pic tightly to my chest, with my memories of Mark and I wrapped tightly around me.
I cannot tell you how or when this darkness began to melt, but it did (obviously), and there is not ever a single day where I do not think about Mark. And whenever the Eagles come to Toronto, you can damn well bet I am at that show, and they always play ‘our’ song. And whenever I go to a concert, I feel his presence around me, sharing the concert with me. And I am still obsessed with the guitar and guitar gods, and I wear a small guitar charm around my neck to remind me of him and all the gifts of enlightenment that he gave to me. Mark was my first love and soul-mate.
Also as a child I was molested by my kidney doctor from the age of 5, up until I was 13. Weekly I had to go to the hospital to do a urine test to see if I had a bladder infection. This was necessary because I never had any of the common symptoms associated with bladder infections (burning when I passed urine, urine that had a bad odour and colour, feeling like I had to go pee, but having nothing come out). After that test, I would go and see the urologist (doctor specializing in bladder problems) in his office, and he would tell me if I had an infection, and if so what medications I needed to be on, and just talk generally about my health (i.e. my weight). He always saw me alone; my mother never came into the exam room with me; and these appointments usually lasted for 2-3 hours. What he did when it came time to examine me was he gave me an injection ‘to calm me down’ and then he undressed and raped me. He was able to do this because back then (I am now 43), nurses was not required to be in the examination room like they are now. Worse still, was that he told me not to tell anyone; and, that if I did, no one would believe me anyways because he was so well respected and that I was just a child, and that he would kill me at our next ‘visit’. So I did, I kept quiet – and I kept that secret for over 30 years. Yes that’s right… the incident was so traumatic that I submerged it so deep within me that I actually made myself block it out. And it wasn’t until I was watching the Oprah show on child molestation a few years back, that a trigger occurred that made me remember that part of my childhood. Good news is, that I am dealing with it with the help of a fabulous therapist.
You might be wondering how the molestation affected me. So let me talk about that for a minute. I have learned through my therapy that being molested set me up to become a victim, and to learn to suffer in silence and in fear. I also learned, that being molested helped me stay fat and believe I was ugly. This was because if I believed that I was fat, and if I believed I was ugly, than others would also see me that way, and it would be the fat and ugliness that would forever keep away men from ever doing to me what my doctor did. Also, learning how to suffer in silence and in fear allowed me to stay quietly married to an abuser for nine years.
As I said, as a young child I was overweight with black teeth (the medications that I took as an infant to battle the bladder infections turned my teeth black as coal); on constant medication for frequent and reoccurring bladder/kidney infections; and often in the hospital. At the age of 16 my hospital stays decreased because I wasn’t getting sick as often; I started to get symptoms with my bladder infections which made it easier to treat me; and I got my teeth capped. I thought that having white teeth would solve all of my problems. It didn’t. I continued to be overweight; still had chronic bladder/kidney infections; was always on medications; and still needed to go hospital to treat them. The only change was that now I had white teeth.
As a teenager, I was still a loner; I still found it hard to make friends; I didn’t get good grades in school; and I still had a poor self-image. So, I began to force my feelings down inside of me with food, which didn’t make me happier and worse still, just made me fatter. And, like with some teenage girls with poor self image, who self-medicate with food, I soon acquired an eating disorder. I would either eat sensibly and only throw up if I had something that I felt was fattening, or, I would binge on ‘forbidden foods’, and then throw it up whenever I was struggling emotionally. I soon realized that I could sometimes eat cake, or French fries, or McDonalds, but not gain weight if I threw it up. So I did, and I began to control my weight gain in this way.
Now I need to explain something here to you. I was not like many anorexics in that I did not throw up every morsel that I ate. The reason I didn’t always throw up, was because I had read about how people who did that behaviour often damaged their internal organs, and I was scared of hurting my already damaged kidneys, and worse still, I was terrified that if I did indeed hurt my kidneys, it would be discovered that my throwing-up was the root cause for this deterioration. Another reason I didn’t throw up all the time was simply, I couldn’t always make myself throw up the food after I ate it.
I’m not going to tell you that I eventually got down to a size 00 and weighed 87 pounds, because I just never got there. Blame it on my health or the medications that I was always on, or that I never starved enough, or never starved/threw up food/ and exercised enough – whatever the reason, I just never got that thin. Not even when I started exercising in university – remember Jane Fonda and ‘feel the burn’??
So my teenage years consisted of still being a loner; still struggling with my weight; always covering-up my body with large clothes; still hating what I saw in the mirror; always having to eat smaller portions than everyone else; always having to deny/deprive certain foods altogether; and still having times when I stuffed my feelings down deep inside myself with food. And believe it or not, this inability to get that thin in spite of me throwing up and constantly policing my food intake made me feel even more like a failure.
It was in my last year of university when I met my husband (now an ex-husband). He was cool; he was smart (smarter than me I thought anyways); he had a huge circle of friends (unlike me who had maybe 3); he had an interesting childhood (not like mine); and he was thin (again, not like me); and he, unfortunately, also had a temper.
In 1989 this man asked me to marry him, and I said yes. Not because I loved him, I mean I did love him – whatever love meant to me at that time, but I said yes more because he was my first every boyfriend and I thought that if I let him get away, no one will ever want me. That was because even though people looking at me saw a pretty, size 12 girl with a perfect smile, I always saw the little fat girl with black teeth. So I said ‘yes’ and got married.
I am not going to go into all the morbid details of my marriage. Suffice it to say that my then husband was abusive - physically and emotionally, even to our 2 children. So, after 9 years of abuse (married in 1989 & divorced in 1998) I finally found the strength to leave the marriage, taking with me my wonderful son & daughter.
The decision to have children was never a hard one for me to make. I always knew that I wanted to have kids; I always knew that I was meant to be a mother. My kidney situation, however, made the process of being pregnant very difficult. My having only 1 and ¼ kidney meant that I was considered to be ‘high risk’ because, if I got an infection during pregnancy, I would not be able to take most medications. The fear was that the drugs would cross the placenta and affect the baby. So, if I had an infection and if it went untreated, it might kill me, or, the baby might have to be aborted because the infection would have put the fetus into grave danger. So, I had a lot to think about, and it didn’t help that my husband would not even contemplate adoption; he told me that ‘his’ child needed to come from ‘him’. So, I decided to go forward with the pregnancy.
My OBGYN was Dr. Ritchie, who was head of the high-risk pregnancy unit at Mount Sinai Hospital. He agreed to take me on as a patient so long as I agreed to his rules – that I would stay in bed for the entire pregnancy. I was only allowed to leave my bed to go to the bathroom, go to the kitchen, go to my weekly visits at the hospital, and go to dinner at my parent’s house every Friday night (I am Jewish, and Friday night was our family ritual to meet for Shabbat dinner). That was it!! Dr. Ritchie felt that the less stress I put on my body, the better chance I would have at staying healthy. So I agreed.
Soon into my pregnancy I got a bladder infection. Dr. Ritchie said that there was a medication that I could take, and that it would not harm the baby. The only thing was that this medicine could only be administered intravenously, and I could do this as an outpatient. So they stuck a needle in my arm, and my mother drove me to the hospital every day, where I sat in a chair along with the cancer patients, to get my medicine. I needed to be on this medicine for 2 weeks at a time; and I went through this process 6 times during my pregnancy.
I put on 80 lbs with this pregnancy; some was water, and some was weight. I went from 175 lbs to about 255 lbs. I also continued to purge while being pregnant. Dr. Ritchie was so horrified by my massive weight gain, that he would talk to me at great lengths at working harder at controlling what I was eating – both in quality and quantity. Some weeks I would be up 10 or 15 lbs, and even though I knew I wasn’t living on Big Macs and Chinese, Dr. Ritchie didn’t believe me. The pressure to control my weight was crippling.
It was a horrible time for me. I was obese and depressed. I finally hit bottom with my purging in my eighth month. My husband and I had just polished off a double order of wings and ribs and fries. Off I went to throw it up. I bent over my immense stomach; stuck my fingers down my throat, and nothing! For an hour I tried desperately to make myself throw up, but I just couldn’t. Then, I looked in the mirror with disgust. “What idiot, what fool, what demented soul, tries to make herself throw-up when she is pregnant, and dealing with other assorted health issues” I screamed inside my head. And that was when I decided to stop this madness.
At my next appointment with Dr. Ritchie I asked him to connect me with a renal dietician. And that was when I began my journey from dark into light. I began to learn what food was; how it was used and stored inside my body; what I needed to eat and avoid because of my weak kidneys (avoid protein and salt because it is hard on the kidneys to digest); what effects my medications had on my body; and basically how much I should be eating. I wanted desperately to stop seeing food as my enemy.
In January of 1991, via caesarean section I had my daughter. She was born with a bladder infection, and needed to remain in the infant ICU for a week to receive intravenous medication. Besides that, she was a beautiful, healthy 7 lb baby girl; and today, at 16, she (like my son) is a rainbow in my life; and she along with my son continues to be my biggest accomplishments.
Soon after I had my daughter, I went to another nutritionist to help me lose weight. I didn’t want to continue with the renal dietician because she didn’t offer me any recipes. She didn’t teach me how to cook healthy, and that was the next step I felt I needed to take to help me make eating healthy a life-pattern. I wanted to learn how to cook the foods I liked to eat in a healthy way because I wanted to stop denying and depriving myself. So, with the help of this new nutritionist, I was able to lose a lot of the weight in a year. I went down to 180 lbs and Dr. Ritchie allowed me to get pregnant again. My husband wanted a son, and my doctor said if I wanted to get pregnant again, I needed to do this before I was 30 because of my weakened kidneys and because of all the usual risks involved with pregnancies in older women.
My amazing son was born in May of 1993. As with my daughter, I needed to stay in bed for this pregnancy too, but never once threw up! I was in control of my food intake, and accepted whatever weight I would gain. This time around I was healthier in my mind. I still hated looking in the mirror because I was so homogenous, but I accepted that I was doing everything in my power to eat healthy, and that I just couldn’t control that part of my body.
Also, because of the 1st pregnancy, my kidney functioning had been greatly reduced, which meant more stress would be put on my one healthy kidney, which meant more infections, which meant more treatments with intravenous antibiotics. As with my daughter, the inactivity during my pregnancy allowed me to put on an even more massive amount of weight, and by the end of this pregnancy, I weighed almost 300 lbs. But I never threw up, gave up, or saw myself as a failure.
While my son was born healthy, I suffered some major complications during the c-section. The anaesthesiologist misplaced the positioning of the epidural in my back. Instead of putting it into the ‘canal’, he put it into my spine, which caused both of my lungs to collapse. I still to this day remember the feeling of being suffocated as my lungs shut down, and screaming that I couldn’t breath.
When I got home from the hospital, I was experiencing other problems: I was of course dealing with the pain from the C-section; my lungs hurt whenever I took a breath; I felt severe pain in my lower back; I felt pain when I put my heels onto the floor to walk; I experienced migraines and migraine-like headaches which sometimes caused me to lose vision in one or both of my eyes; I also experienced severe bloating in my stomach, and a burning inside my throat after I ate or drank anything; and I found it hard to breath, and a cold quickly went into my lungs and quickly turned into pneumonia or a bronchial infection; and I had more frequent bladder infections (about 3-4 a month).
I was in the hospital for only 4 days when I was released and at home, I was in so much pain that I didn’t leave my bed/house for months because the pain was so severe. But, in spite of this I got busy at the job of taking care of me.
I found a nutritionist who came to my house to get me back on track with food control and losing the pregnancy weight. I also sought out doctors to help me figure out what was causing all my pain.
The first doctor blamed my kidneys for my back pain and put me on medication that people dying of cancer go on; the only thing this medicine did was to decrease my kidney functioning. After no change in the amount of pain I had in my body, I went to another doctor who diagnosed me as having endometriosis (the presence and growth of ‘functioning endometrial’ tissue in places other than the uterus that often results in severe pain and infertility); and again treated me with medication that allowed my kidneys to become more damaged. Finally, in 1997, after no change in my symptoms, my parents convinced me to go to the Mayo Clinic in Minnesota. So I did.
After a week of tests, the many doctors working on my case found that I did not have endometriosis, but rather I had:
1. 8 herniated discs in my spine, which was causing my lower back pain. They felt that because of the bed-rest and weight gain, my spine just kind of deteriorated. This classified me as a ‘chronic pain sufferer’. To combat the pain they suggested that I ‘just live with it’ because medications would hurt my kidneys.
2. I had something called plantar fasciitis in both heels. Plantar fasciitis is a common cause of heel pain in adults. The plantar fascia is the flat band of tissue (ligament) that connects your heel bone to your toes. It supports the arch of your foot. If you strain your plantar fascia, it gets weak, swollen, irritated (inflamed), and may even tear away from the heel. Then your heel or the bottom of your foot hurts when you stand or walk. They doctors felt that because of the massive weight gain, the pressure on my feet whenever I stood forced the muscles to tear; I believed this because my shoe size pre-pregnancy was 5 ½, and post pregnancy I was wearing a size 8 shoe. Doctors recommended that I get insoles in my shoes to help with the pain. 3. My headaches they felt were being caused by the extreme pain I was experiencing from my back and heels. I couldn’t take any medications for this because, again, these kinds of drugs are not healthy for the kidneys.
4. I had adult onset asthma. When my lungs failed during the delivery of my son, the hospital never really addressed the issue with me, and so my lungs never properly healed. The doctors recommended I use an asthma puffer;
5. I was described as being ‘morbidly obese’ because of my current weight (over 230 lbs at 5 feet 4 inches). The nutritionist absolutely refused to believe that I was strictly following my nutritionist’s program because of my weight, and he absolutely just didn’t ‘get’ why I was not exercising. This doctor really couldn’t acknowledge that there existed, for me, a significant inability to exercise because I was in so much pain. They recommended that I immediately start to exercise and eat less!
6. My kidney functioning was even worse; and
7. If I stayed for another 9 days, they would diagnose my stomach bloating and burning in my throat. I chose to leave. I had been there for almost 10 days already, and I just couldn’t process any more problems.
While the Mayo Clinic was amazing at diagnosing my problems, they really left it up to me to come home and seek out the necessary doctors & specialists needed to combat each of my problems.
So, back at home I was, to say the least overwhelmed by all the problems that I had, and depressed because I just didn’t see how I was ever going to regain an expectable quality of life. So, I allowed myself to feel sorry for about a good week. Then I got busy, for the third time, at the job of taking care of me.
1. I got myself a trainer. We made a deal – she would work out with me so long as I didn’t use my pain as an excuse not to exercise and not to really challenge myself. I began working out, 5 days a week, for an hour a day, walking slowly, and worked my way up to eventually running a 5K marathon with her.
2. I went to a ‘gait specialist’ who made me orthodics, and recommended the type of running shoe that best supported my feet. To this day 90% of the time in my running shoes because they are the only shoes that don’t hurt my feet or my back;
3. I then got myself another nutritionist, one who really understood about my medications and kidney disease. I now, more than ever, needed to be more cautious about the foods I was eating – I needed to be very regimented about my salt and protein intake because these two things hurt the kidneys the most.
4. I started to go to a MD naturopath. While I believed that modern medicine helped me to have my children, I also believed it harmed my health as well. My naturopath also recommended that I start seeing a therapist to help me ‘deal’ with the stresses of my health.
5. I started going to a therapist. At first we talked about my health and my emotional struggles; and once I began to trust him, the floodgates opened up about every detail about my childhood. And going to see my therapist is absolutely one of the very best things I have even done to help myself.
6. I got an asthma puffer, that I used only when I felt it was hard to breath, like in the dead of winter;
7. As for my back pain, my GP in consultation with my kidney doctor prescribed a ‘muscle relaxer’ that I took at night to help me sleep. I found that at night while I would fall asleep, I would also wake up exhausted because the pain never allowed me to get into a deep state. So during the day I felt like I was trudging through quicksand, and needing a nap in the afternoon to re-charge.
8. As for my headaches, I was allowed to take an extra strength Tylenol, but I really needed to watch the frequency and amounts because, again, too much would hurt my kidneys. So while I have headaches every day and all day long, I only take Tylenol when they are literally blinding me with pain.
As for my stomach bloating and burning in my throat I persisted with my GP and others to figure out what was wrong. Every doctor I saw shrugged this off. They saw my bloating as being caused from being fat, and that the burning was from food allergies, even though I stopped eating certain foods (like milk, wheat, and sugar) to see if that was indeed the case. And it wasn’t. These doctors didn’t accept that no matter what I ate I had a reaction to food. I can explain this problem to you more clearly by telling you, that one day my daughter and I were leaving a restaurant after having lunch, and my stomach bloated out as usual. Out side the restaurant, some woman looked at my stomach, placed a loving hand on my belly, and with an angelic smile, said “ …so sweetie, when are you due?”.
After 13 years of suffering, and persisting on/and/off with different specialists, I finally got referred to a Gastroenterologist (a doctor specializing in of digestive diseases.). After a 7-minute surgery, he discovered I had a severe hiated hernia and acid reflux. The hiatus is an opening in the diaphragm -- the muscular wall separating the chest cavity from the abdomen. Normally, the esophagus (food pipe) goes through the hiatus and attaches to the stomach. In a hiatus hernia (also called hiatus hernia) the stomach bulges up into the chest through that opening. Often, people with hiated hernia also have heartburn, and acid reflux. Acid reflux is a condition in which the liquid content of the stomach regurgitates (backs up, or refluxes) into the esophagus. Most of the time, the cause is not known. Some people develop a hiatus hernia after sustaining an injury to that area of the body; others are born with a weakness or an especially large hiatus. Some experts suspect that increased pressure in the abdomen from coughing, straining during bowel movements, pregnancy and delivery, or substantial weight gain may contribute to the development of a hiatus hernia (who does that sound like?!)So, to help combat these two problems I went on 2 different pills.
So, from that time on (1997), my days were filled with managing my health and my kids. I exercised 5 days a week with a trainer; bought every ‘low fat’ cook book I could find so that I could continue to learn healthy and now kid-friendly recipes; I continued to have 3-4 bladder infections a month which meant constant medications and days with severe symptoms; I continued to go to my therapist to vent and to learn who I was and how I came to be, and how to change those behaviours that were not working for me; and continued with my naturopath and nutritionist, and with being a wife and mother, sister, daughter, and friend. I was, to say the least, busy and exhausted, but at least I was living a better quality of life than before I went to the Mayo Clinic, and that was what motivated me to continue with everything I was doing. And I was happy and positive and doing fine; and then I had 3 setbacks – 1 in 2000, 1 in 2004, and 1 in 2007.
In 1997 I fell into a deep depression. I didn’t shower; get dressed; eat or enjoy time with family and friends. I did the bares of living – doing only that which directly related to the wellbeing of my children. Life seemed unbearable except in sleep. And, a huge part of my misery was directly associated with my marriage.
It took me a year to find the courage to leave my husband and our tragic marriage. All I will admit to, was that my children were the best part of my marriage, and that my ex-husband was abusive. As we both know, the Internet is not a private forum for discussion, and so, put of respect for my children, I shall never say anything more that what I have just written in regards to my marriage. I hope you can understand this. Moving on …
In 2000 I was able to go down to 165 lbs with exercise and changed eating habits (thanks to my nutritionist), which were now in-breed choices. That euphoric state, unfortunately, did not last long. In October of 2000 my kidney specialist was alarmed at the decreasing state of my kidneys, and he felt that in 5 years time, if I continued on without protecting my kidneys from all the harm the infections and medications were causing, I would need a kidney transplant. His recommendation was for me was to go on a pill that was supposed to help protect the kidneys from damage caused by the reoccurring infections and constant barrage of medications. The classification of medication is called ace-inhibitors, and they protect the kidney by slowing down your blood pressure, which in turn slows down how hard the kidneys need to work. The major side effects are: tiredness, dizziness when going from lying down or sitting to standing, and weight gain.
I immediately started taking these pills. And I immediately started feeling their side effects. I was tired all the time. I continued to exercise, but what I did was greatly decreased because the pills hindered my endurance and strength. As a result, I napped a lot during the day. Also, whenever I went from lying down or sitting to standing, I got so dizzy, that if I did not do this movement slowly, and in several steps, I would get dizzy and fall. Also, in less than a year of taking these pills, I put on 50 lbs. No matter how little I ate I gained weight; no matter how hard or for how long I exercised I gained weight; and when I didn’t have the strength to exercise, I beat myself up because I was gaining weight. I was in a hopeless and helpless state.
I was also very depressed because I was missing out on so much of my children’s lives because I was so tired and lethargic. Going to the park, turned into watching TV. together, or playing board games, or reading stories. Activities with them turned into doing things where I could be sedentary. And I hated them asking me why “mommy was so tired all of the time’. I couldn’t tell them the truth because I didn’t want to scare them.
I continued on with these pills until March of 2006, when at 230 lbs I had had enough. So, against my GP’s strong urging, I went off these pills and my pain medications. My GP, however, would only consent to my going off these pills if I agreed to have certain tests done every month to monitor my kidney functioning. Naturally I agreed. By September of 2006 I was down to 200 lbs.
In 2004 I started feeling pain and hearing a ‘clicking’ sound and feeling a grinding in my knees whenever I went up and down stairs. Also, my knees would just buckle and I would fall down the stairs if I was not careful. So I started to go up and down stairs using the same leg to step up or down.
Then in April of 2004 I fell crossing the street, tearing all the ligaments in my right leg/knee. Furthermore, x-rays showed doctors that I had developed degenerated arthritis in both knees, and that that was what was causing the pain and weakness in my knees. Doctors recommended a knee brace and physiotherapy for the knee to help it heal, and not to exercise during this process (3 months) and then, after the ligaments healed, I was no longer to continue walking/running outside with my trainer. I needed to slow down, and find ‘low-impact’ exercises that would not stress the knee joints. That meant finding a gym where I could do a recumbent bike or treadmill.
Then, in January of 2007 my GP told me that my kidney functioning was dangerously low, and I needed to go back on the ace-inhibitors because I was destroying my 1 healthy kidney. He didn’t give me a choice because I was killing myself.
When he told me this news, my eyes started to prickle with heat, and then the tears started to pour out. I was crying, not for my kidneys, but for fear of the weight gain that I was sure to come. I was also crying from frustration. It just felt that for every gain I had a bigger setback that would erase those small victories that I had worked so hard and for so long at achieving. I was tired of never reaching the finish line. So I cried for myself; for everything I had suffered, and for every struggle I have endured. I cried because I felt like it was all for nothing. I was being forced back into a life where I was too tired to live life fully, and too fat to move and to be loved.
So, as in the past, I allowed myself to grieve for about a week. No one in my family could comprehend what was so traumatic being lethargic and obese… they felt that if it kept me alive, then it was a small price to pay. But I just couldn’t be that accepting; they just didn’t know all that I had suffered being fat. And then I gave in to my fear of dying, and started to take the pills.
My GP found ones that are not supposed to make me as tired as the previous pills, nor are they supposed to make me gain weight. My GP wanted me to start with ¼ of 1 pill, and if no side effects occur, to slowly increase the dosage by 1/2s every two weeks. Then, I am to go back and get re-tested to see if the decreasing in my kidney functioning had been slowed down. I can never ‘fix’ the damage, the goal is to stop creating more damage. And, if I do gain weight, I am hoping to be loving and accepting of myself.
More recently, in 2009 I decide to go back to school. I entered a program that allows me to work with children (people) with all manner of exceptionalities – both physical and developmental - syndromes such as Autism and Down Syndrome. As with any degree that focus on interacting with people, a practicum is a certain requirement to the program. Thus, during my placement in a group home for adults with exceptionalities, I suffered an injury to my back when I transferred a resident from their wheel chair to the toilette. This injury left me with constant numbness in my hands and fingers 24/7, and these sensations become overwhelming during the night when I am sleep.
In December of 2011 I suffered an episode of gout. And while I live in a heightened state of severe pain, the gout was something that I had never ever experienced. The pain was SO horrific; and it was constant; and nothing alleviated the pain – not pain medications, not ice or heat. I was actually walking on crutches until I was properly diagnosed and given medication. The problem here is the entire management for gout consists of taking both anti-inflammatory (gets rid of the pain) and uric acid eliminating medications, and the former is something that is harmful to the kidneys, and so I could not be given them, and the latter is something that I was only allowed to take for 10 days as it is also harmful to the kidneys. And so I am left with pain in the toe.
Well, that's my story, and you are probably wanting to know how I manage all of the pain. Well, I take two prescription medications before every meal for my hiatus hernia and 2 prescription medications at bedtime to help me get into a REM sleep, all of which have been deemed safe by my kidney doctor. I also supplement this Rx diet with remedies from my naturopath. Obviously, I also take medications for my bladder/ kidney infections. As for how I cope with the pain; I achieve zen with 'mind-over-matter' techniques and motivational statements. I have to, as I have NO other alternative as all pain medications are digested through the kidneys, and with mine being so weak, I am simply not allowed to take medications that would further compromise their health.
Tragic life experiences are difficult to write about, but I have been honest here. I have told you everything I endured as a child on up until today, December 2011. And, to be brutally honest with you, reliving some of those moments made me cry and some made me physically ill.
We all live within a story – our lives are our stories, and as each day unfolds, we must choose how we want to deal with what life serves us. It is no exaggeration to admit that some of my challenges have pushed me beyond my limits of endurance and acceptance. And during those hard years, I tried suicide, and I faked happiness.
As a child, and even as a teen, I never had the tools to deal effectively with what had, and was happening to me. But as I started to educate myself with the help of the many loving professionals that I surrounded myself with, I started to learn from my circumstances, and in the process I found a place of understanding, healing, and compassion for myself. I soon created a place where I could become a friend to myself.
I wanted to write about me because I felt that maybe there were others just like me out there; people who have many issues that they need to deal with, and that the victories in their lives may not always be huge by other peoples standards, or may never fully be conquered; but they keep on going because life is not 1 huge race with just 1 finish line; for some people, like me, life is more like an obstacle course, and every hurdle crossed needs to be viewed as an achievement in and of itself. I wanted to share with you my story in the hopes that it may inspire you to become your own friend and begin to cultivate the courage it takes to manage, accept, and survive your life’s twists and turns.
We all have a story to tell – where we began, what happens to us while we’re here on earth, how we manage, what we learn, and how we continue on through our years. I have lived through pain and suffering, and come close to death on several occasions. I have learned the true meaning of toughness, courage and love. And in the end I have come to embrace two simple realities: things happen to us and we have to respond. We don’t always have much control over what happens to us, but we do have a choice in how we respond to those circumstances. We can feel as if we are victims of our misfortunes; or we can tap into that deep inner place within each of us to help us find our way through our challenges, be it our weight, an illness, an injury, or the death of a friend or loved one. My inner place is peaceful and it does not ever go away when bad things happen to me. My inner place is a place of love and strength. And what happens to me will never change that. I will always love myself, and I will always choose to fight rather than to give up. And one of best ways that I have come to love myself is to always seek out help. That’s right, whenever I couldn’t cope, I reached out – to my family, to my friends, to my nutritionist, to my GP, to my trainer, and always to my therapist. I always got help along the way, and with that help I got confident and secure. My heath problems taught me the importance of letting others helps me; and with their love and support, I grew to love and accept myself.
My life has not always been easy. I have had to, for the most part, teach myself how to transcend the harsh moments of my life in order to become courageous and in order to survive. I believe that what happens to each of us – those experiences that push us past what can be deemed a normal existence, is also the very thing that helps us find the positive, and limitless inner beauty that makes each one of us special.
We all know that life is full of risks, loses, fears and pain. But in spite of those pitfalls, I am hoping that you can find a way to revel in the glories of your life. I know that you can prevail over doubt, despair, and illness; all you need to do is to choose to. The truth is that we are all truly resilient. Our strength lies within us, just waiting to be tapped, but maybe often obscured by fear and ignorance.
I hope that you will allow yourself to not go through your struggles alone. Often that is a hard idea to accept. We think that we need to work out all of our stuff by ourselves. But we are mistaken in this belief. We truly do not need to suffer in silence. As you fight to find your inner place, learn to lean on your family, your friends, and trusted professionals for strength and encouragement and motivation. They will give it freely, and out of their love for you.
I also hope that you will come to believe, like I have, that you do not have to be defined by your appearance, by your illness, your afflictions, or by what has happened to you. I hope that you will come to see, as I have, that you can learn to manage your circumstances, instead of allowing them to control you. And above all, I hope that you will finally learn, as I have, how to take a deep breath, and truly and deeply love and accept yourself – all of yourself inside and out. I am glad I wrote down my story for you, and I am grateful and honoured that you chose to read it.
OX Jen
