When I have watched wild life shows; which I love, I have paid closer attention to learning more about bears. Their habits, relationships, parenting, and co-existing with other bears. I have lots to learn; as I grew up closer to bears in the wild, while living on the Coast of my province. As a woman, I have been lucky to have some women and men in my life; who have taught me. I have literally “walked” with bears. Soaked up bear teachings, naturally. It does not surprise me, that other PAW that I have met, feel similar, about the Bear Spirit.
One thing I have witnessed with mother bears and the cubs, is when she goes to find food, she leaves them; when they are very small. Once they are big enough, she will take them with her to the safest places to find food. Finding a safe place is not always easy, but they do it every year. They know what to do, and they do it! If they sense danger, or smell it, they run very fast. Sometimes they are running away from other bears that will kill their cubs. The safety and survival is the most important thing; and mama bears know this! Despite not having a male mate to help raise the cubs; or the fathers; to put it another way. Family is very important to so many people I have met, as it is in the animal kingdom.
I have met many PAW who have survived the break up of their own family, and sometimes the loss of the child. There are issues in child welfare system that have so many Indigenous children and their families involved with. This is one of the systems that wear down a family so very much; and has tested some of the strongest people, I know. I have met over the last 24 years have taught me many lessons; much like the ones I am learning from nature shows about bears!
When I found out I was a PAW, I was devastated; it was 1989 and ground zero for the first wave of deaths. I launched into my own spiral, but eventually found my way out. When I did find out, I started talking about it, to community people, to help them understand this new epidemic. It took me to many places, and I eventually found a mate; and the support was helpful. When I did reach out for support it was for different reasons. I needed other women, especially when I became pregnant with my daughter. Many were parents before me, when I first tested positive; yet, I thought I was the only one. What I found, was a group of women who were just as afraid as me, bewildered by diagnosis, living with uncertainty; but also finding hope within our own painful experiences. Some were pregnant, some had children and some had lost theirs to AIDS already. I had no clue what to expect or who to turn to for any information that would help me.
At that point in time, I was pregnant, in my early twenties and terrified! It was the older, and women who had experiences as mothers that helped me the most. It wasn’t the “answers” they gave me, it was the experience and wisdom that helped me feel calmer, stronger and able to face the next day. I was excited and apprehensive about the impending reality of parenthood! I knew nothing about being a mother, or even how I would deal with a possible sick child; which was a possible reality. A one if four chance that I would infect my baby with my virus.
This didn’t happen. Instead I had a healthy, baby girl who weighed almost 10 pounds in the winter time. This was the beginning of many learnings, trials, worries, but motherhood was the best part of it. Being able to nurture a small human, that I grew in my own body; that took me many decades to appreciate and respect. I learned that when she fussed it wasn’t always from being hungry or needing her diaper changed. I learned from her, as she learned from me, and today, almost twenty one years later it is till the same. My baby is a woman! She is not the helpless baby she was, she doesn’t need me to feed her regularly, or change her clothes.
She does need me and I need her in different ways. She is independent, creating her own life, values, and always willing to help and love those around her! My best dream come true, an amazing person that the world can experience and love. She is also one of my fiercest protectors and knows everything that goes on in my life and with my health.
The last two years have been the most challenging in many years. My cub(s) has had to watch their mama bear get sick and have been part of every day good, bad or indifferent. My job has been to “normalize” their life and create safety, while helping them grow, enjoy being part of a loving family that adores them. My cubs get to see the amazing family they are apart of across Canada. The family that we belong to is large, by blood, by choice and by circumstance. But, we belong!
I started taking ARV’s in 2001, after 14 years of doing without medications; during the second pregnancy of my second child. This was scary, but and important decision, as HIV positive women were now giving birth to healthy HIV free babies; with medication. I didn’t want to take my chances, if I had guarantee of a healthy baby. All mothers’ want a good looking, healthy baby! Yes? I know I did! The medications they put me on were “safest” for positive moms; but not me. I developed bone marrow anemia, and had no energy, or oxygen in my blood. I couldn’t walk up stairs without losing my breath, and then needing a nap. It wasn’t fun, and I had to have many test that needed to be run.
I know many other women I have spoken too have had side-effects from the medications; and chose not to continue them because of the side effects. Many of my friends didn’t make it and just drank themselves to death. Some died from the medications themselves, but have only been documented as other causes…like AIDS was in the beginning. People were documented as dying of pneumonia and skin cancer, not AIDS. Many of us persevered despite the side effects and and do to this day.
The ARV’s I have taken over the last few years have caused many health problems for me, and have gone unmanaged. It started in 2008 when I began taking Protease Inhibitors (PI); one class of meds, promised to be more effective than the other classes of drugs. I didn’t have much luck with the other classes of drugs by themselves, but once I started the PI my immune system got stronger, and I had more T-cells than on any other medication.
With this new regimen of medications, came severe nausea and the runs right away. My HIV specialist, Dr. B., encouraged me to “push” through, and it would improve, in a few months, if I did “BRAT”; the recommendations for managing the runs and stomach upset. All that happened was cause me to get pancreatitis, that can be life threatening if not treated properly from a medical intervention. The guidelines for treating pancreatitis are very clear and spelled out for doctors. Mine chose not too follow this protocol; I left with food enzymes and a prescription for medical marijuana! The enzymes were not helpful to cure my pancreatitis, but, actually were the opposite. Had I known, how serious the pancreatitis was, I would have insisted on being treated properly. But, I trusted him and believed at my core that the course of “treatment” was the answer; instead of doing my research.
The runs and eating problems just continued, and my quality of life changed. I stopped feeling good about eating food, I became very worried about where I could go to the washroom all the time. My mental health changed with this; as I was now vulnerable! I was not in control of my own health, and felt as though I was alone; but felt like I could trust my specialist and team of experts assigned to my treatment. This went on for two years, just before he retired. It was at one of my appointments that I was told by him, that there is new research to support that more people on the Protease Inhibitors I was taking, caused more digestive problems; and that we should consider changing the meds.
I agreed! But, I was not sure why it took two years of suffering for him to realize it was not in my best interest to continue on these medications; I took them because I trusted his expert opinion. I switched to another Protease Inhibitor shortly before he retired..and my side effects persisted. The digestive problems continued, and got worse. It was in the fall that I started on my new combination of medications. After, he left. As usual, the digestive problems were similar, if not the same. Looking back, I see how ‘lucky’ is was to have a doctor in many ways like him. Why? He listened to me, he and I worked as a team; looking at issues from different perspectives. Weighing out the benefit and risk…together.
When he left, this changed a great deal; as did the quality of my care. My once very encouraging, nurturing, doctor who listened was replaced by “policy”, a long battle for what I felt was my right…..the same quality of care. This battle did not help my health, nor did it help the quality of care. This is one lesson, I have had to painfully learn, “for some reason”; as there is a medicalization of stigma that does exist. Many PAW know the stigma within the medical system that can exist; either through policy or practise.
I still had to deal with the fact that I still had to take my medication; deal with my medical issues as I always had done. The medications were not any better, and I had unmanageable side effects. Side effects that interfere with my day to day living…and they were. It took some time to coordinate with the new clinicians and their team at my clinic. When I did get in and mention my side effects….I was told to “push” through the side effects, as they “should” disappear or become “manageable”. This advice coming from people who have never taken the medications; nor would they unless HIV positive. I pushed through…but nothing improved. At first the desire to eat was only remedied when I used my medical marijuana, as eating it or smoking it, helped me eat! Without it, smells would make me very sick, to the point of wanting to throw up. But, I kept on pushing through..then I started to not eat at all.
It was unpleasant, it started to hurt my stomach, every time I ate. It made me feel sicker, but the most important thing was “to stay on the meds”; which I did. Worst mistake I made. Once I started not eating, it spiralled out of control from there. I would make food for the family, but hide in the bedroom; while they ate. The look of wonder was always there are meal times. Wondering if mom was going to eat today. My mental health took another twist and turn, to cope with this; but had no support or anyone to give words to what was happening to me. I was sick, on the medications that were supposed to help keep me healthy. I was wasting…….withering away, like a popsicle on a hot sidewalk.
I lost 15 pounds in one month, December. Then more and more in the coming months; all while under the care of a team of experts at my clinic. I would phone because my stomach and digestive system was a wreck; and I felt as though I was not fighting for my life and health. This fell on deaf ears; but it was undeniably happening, before everyone’s eyes. By the summer of 2012 I weighed 136 pounds, was in severe pain from head to toe; and was absolutely terrified!
My mother, grandparents, aunties, uncles, cousins, siblings, all noticed! They wondered why I would not eat at our large family gatherings; which would be easily a gathering of 45 people at times. We love food in our family! At this point, I was not walking, had vertigo, a tremor in my left hand, was a skeleton of a woman, and hurting to the point of not being able to get out of bed.
So, I phoned, who I thought was going to help me. This was not the case, I was sloughed off like dead skin on a loofah pad. The nurses I spoke to would sound like they cared, but they were reporting my desperate calls for help, as”combative, abusive” behaviour.
I could barely walk, eat, or stand….very threatening. Very bad patient I was/am/will always be. Yes, my own expertise of living with HIV for 24 years has been unwelcome by many. I questioned what they were or were not doing. I have “abused” doctors; when I tell them I have been positive longer than they have been a doctor. I have demanded pharmacists, nurses, and others’ be accountable to me; by answering logical, factual, and relevant facts. I wanted to know why nobody was helping me; and never got an answer to this day. I am the problem, not the PATIENT!
The ethics of my team are glaringly not aligned with my expectations, nor experience with my previous doctor; who retired. The doctors I helped to train, during their residencies at the clinic, including my current HIV specialist; have changed many things about the clinic, not all good and in my own experience, learned very little of what the clinic was meant to be, a safe space for women, children and their families.
This became a “battle” of wills and ego, not a medical issue at all. I became the enemy……and still am.
This is survival right now, I have not quality of life, but do not dare point any finger or say anything; as it does impact the quality of care I get; despite it being unethical to do so. The side effects caused by my medications still show their scars, in the form of several deficiencies. I have anemia, Vitamin D, and a B12 deficiency being cleaned up by a GP. My pain is still very real and will not be treated by my HIV specialist; as they quickly placed policies and staff in who ensure that you follow orders! Is this why people ask my why I go “there”…to that clinic. Good question. I get severely triggered when I go to my appointments, so I plan very carefully who I talk to, what I do and do not say. I take extra medication to calm my nerves each time, I go.
I have never had problems with any doctor, clinic till now…after 24 years of living with this? I do not understand the challenge, but I am assuming it is not just me experiencing these things that happen. I have spoken to several women who go to the same clinic; have heard similar horror stories and NOBODY ever has to account for it, but the patient. We pay with out t-cells. We pay with our dignity, we pay.
I am now being refused the care I deserve and have a right too in Canada. I have grievances that need to be dealt with and reported to the BC College of Physicians and Surgeons. That takes a lot of energy and time and help; which I lack right now. I guess keeping me sick and weak is smart…who wants a patient that is speaking truth to come back and tell on you, for being selective, unethical, and just plain uncaring. How embarrassing that would be…for them.
However, I am just dealing with the basics of life. My family, my health, and my work I committed to, July 1990. I am in pain less these days, because of some compassionate people, who are not medical professionals. I have done my own HIV care before, and now am forced to do my own pain management.
I cannot find ONE doctor in my city that will help me treat my pain, and my HIV clinic does not prescribe anything but ARVs. Apparently a new policy, from the ‘HIGHER UPS’….I keep wondering who those higher ups are.
I can tell you that all my complaining got me a nice package from Purolater Express one Monday morning from my HIV Specialist. It wasn’t a love note, it was a horrible display of insecurity and butt covering; necessary for her own sake, not mine. She had to outline each thing she perceived a help; she must have spent a lot of time doing that. Oh, and it also contained the “clinics” policy on “combative”, “abusive”, “difficult” patients like me and how the staff are to be treated. Basically a: Warning!
So mama bear is looking out for her cubs, I will look out for mine.
My cubs have a sick mama bear, but I know that they see me fighting for life, dignity and our life together! I am proud to be able to function at my best and do most days. This experience is truly Colonial, and would be akin to Dara Culhane’s book, “An Error in Judgement”. The journey continues, as we get comfy in our den for winter.
The cubs are healthy, happy, busy and I love watching them grow! And they are getting big.
Till I get to you again. Be well, be truthful, be brave!
From the Den,