Promoting Helpers

I am reformatting my webpage, and this is a learning curve for me. I will find someone to help me. In the meantime I wanted to share two links of some really special helpers I have found. Helpers come in all forms, and it is our ability to receive that will lead us to who and what we need. This is a celebration to find helpers!
I have found two and I want to share their links with you until I have a page dedicated to Helpers! I believe that when we connect with other people, we widen circle.

I recently have been working on changing negative thoughts and feelings. I love Facebook as a way to find helpers.

Teri is one of them:

http://www.healinglightonline.com

http://www.blogtalkradio.com/usc-radio-p…

http://www.twitter.com/ReikiMasterTeri

http://www.reikiwithhorses.com

http://www.reikiwithpets.com

Patrick is another helper:

http://www.drbuckeye.com/

When Mama Bear is Sick

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,

PAW

 

 

 

 

 

The Day My Filling Fell Out!

I had a small crisis today, when a filling fell out of my tooth today. I had an absolute moment of “OH NO”, going on. The anxiety stems from the lack of access to dental care here in my city. Despite being in a large city with about 259 people who practise dentistry of some capacity, I turned to Facebook for help, as I often do, as it is an instant network of people; each with different knowledge. I had a response and immediately made my appointment, and have one of the first medical emergencies, I can honestly say is, “OK”.

I hate the dentist, make no mistake about it. I had very poor dental health when I was younger, and it has carried through to adulthood, by barrier of insurance! There is a loophole created, for dentists to refuse care, based on income aka insurance.

They are however, supposed to assist you in an emergency to someone who will help you. The second receptionist I spoke with, was helpful, and suggested, I go to a mall dentist. The larger corporations have better ability to “wait” for the process of being reimbursed.

This is two fold, well three if we want to discuss the differences between provincial funding and federal funding; when you are First Nations. Two systems to manoeuvre, if you know how, or who to ask….so jurisdiction and funding 101 another day, ok. Basically, I can call almost every dentist in my yellow pages, and get refused probably 200 times, or so!

For exaggerations sake, lets’ say it is most of them. I was lucky and had three women respond within minutes of me posting on my Facebook page, what I needed. I got three suggestions, and an appointment for tomorrow; a Saturday.

I guess, what I find amazing is, not just the support I felt, but the warmth of the receptionists voice. I didn’t get the “sound”, that fills that void when I tell them what type of insurance I have.

My dental health is less than healthy, and I know how important it is to have healthy teeth and gums, even if you are missing a few!  I have been waiting for a few years to launch my appeal with Non-Insured Health Benefits to have a root canal done. Why, have I been waiting so long? My previous dentist did not sign a piece of paper……so back to square one. Like, I said, jurisdiction is something else.

I  got an appointment with a dentist at the Bay Centre here, and had two more numbers to call…wow! I am actually looking forward to seeing the dentist! At least I know what to do in an Emergency now…post it on Facebook!

Actually, I like to look and see what medical recommendations there are, and what is legislated. Somewhere in there, I am all smushed up, like cookie crumbs….Till then, here is what to do in a dental emergency, as an adult if you have coverage. If this dentist works out, I am holding on for dear life….

Resource for dental emergencies in British Columbia.

BC Dental Emergencies

The Glutamine Files

Ethical, expert,wise

A True Healer

I am coming up to a significant milestone in my life! I had a serious illness, that left me bed ridden. No doctor in Canada, was able to assist me or heal me the way,Dr. Patrick Nemechek, did! I have nothing but good things to say about this man; he never has been wrong, and always has my best interest at heart! I am blessed! Enjoy my blog for the week!

 

It’s December 29/2011. Dr. B, L, K, Dr.N….too many people, and too few results at this point. Earlier in the month I wrote a note, as I was documenting what I was “not” eating, by documenting what I was eating. The entry reads:

Today was a very stressful day a few times. I divorced my pharmacy today, ran up my phone minutes and realized that I need to evaluate more of my life.

It has been an intense year of loss and change. Also, the impending death is closer than I care to know..not me, but it reminds me of other thoughts that can cloud my vision…..

Later that month, I am getting a phone call from my GP telling me I have H. Pylori, and I need a iron infusion therapy. Great another doctor, to be referred to. To gauge how I am supposed to “act” in order to get results. Since October/2011; I have very ill, with all the symptoms, so that makes sense, but the weight loss, was so extreme. I had 50 pounds of weight literally, fall off of my body. I wasted….even though I was on medication, and seeing my doctor(s); documenting my problem.

I can go directly to January 7/2012 and see that I only ate : my medication, 2 cups of almonds, decaf green tea, and some waffles. That was a good day! My family spends most of their time seeing me hide from dinner time, and stop trying to find stuff for me to eat; as it all is so gross. Don’t get me wrong, I love food! I was even told that, “You could lose a little weight, but not like this”….verbatim quote by one or more doctors, I seek help from.

My naseau,  bloating, wasting, malnourishment,  will turn into vertigo, imbalance, naseau, vomiting, blood pressure changes, pounding headaches with movement, forgetfulness, neurology problems (tremor), pain that exceeds my limitations, high liver enzymes, back pain, light sensitivity, headache, immediate discomfort on eating, constant bloating and upset stomach. 

No, I was just wasting away….with no relief from anyone. Each person I inquired with about my symptoms dismissed, ignored, refused to investigate, something that was not normal for me or anyone, I know! This was clearly just not priority for them, but I persisted, despite the barriers of doctors who would not intervene, despite having a very serious illness and a family to take care of. I did it!!!! By myself.

I remember it being very cold, but mostly painful to get in and out of the bathtub. Sitting hurt my tail bone, because the normal body fat was not protecting me, it was just pressure. It was even a good day, to get to the bathtub. The pain, I remember was like nothing I had really even experience physically or mentally from this.

By the time the spring time came by I was really in rough shape….this was the mom’s not eating again days. Having my family watch me wither away was so painful for them. At one point I brought my mother and a dear family friend to my specialist appointment. I had been going to my appointments mostly by myself (big mistake), all this time, and very independent; but I was so unable to get around this crisis. This is when the testing started…the “investigation” for malignancies aka cancers, ulcers, etc…..not related to my medications or the side effects of them.

I stopped taking my meds in May/2012. I remember it was the long weekend, I was in tears (again), as I often just cried out of pain and frustration, when it was really bad. I realized, the medications were the problem, with guidance from a dear peer! He told me to stop taking them! If them are making me sick, stop…that made logical sense to me. My CD4′s were pretty decent, and viral load, was undetectable! So, I stopped….

Within a few weeks, I was bed ridden….remember all those things I mentioned above…I couldn’t move a thing, without wincing. It was horrible; because I couldn’t mentally escape my body…there was nothing being done for my pain management, despite it being well documented, and witnessed. This “limbo” brought my mind and spirit to some desperate places, I have not been to in a very long time. I just could not convince anyone that I was really suffering!

I got excuses, ignored, and sort of used to just make some money! Each visit and consult, gets my specialist, doctor, nurse, lab tech, etc. PAID! Wow…and I just lay there. I felt no dignity, no pride, no camaraderie or support, I just felt very alone, and very afraid. I have never been that ill before, and wasting on meds? Unheard of! Who wastes on meds?

At one point, I begged a friend to look for help, knowing that he would know who to contact, if need be! He reached out for me, and got a miracle! I remember the evening clearly, even though, I couldn’t talk at this point, and had to have someone talk for me. It was, Sunday and it was about 7 or 8 pm. My phone rang, and I was; where else? In bed! This guy calls me from Arizona, says he is a doctor who specializes in wasting, and has helped many people like me. This is a long conversation, because I had to have someone speak to him for me, as I was a mess. The next hour, this guy is asking questions, taking his time, then he suggests that I try two supplements, that have helped many of his patients. Something he tells his HIV positive patients to use, for their health.

I was going to try anything at this point, so once I started taking the Inulun and Glutamine, I noticed improvement within a few days. My brain wasn’t as foggy, and I just felt different. Within a week, I was up off the bed; walking! He told me to call or text him in a week and see how things were going. I did, and told him, something was different! ME! I just kept going, each day, faithfully with my Glutamine and Inulun. I was suffering from SIBO, a condition not found by medical tests, but by following the symptoms. I was totally blown away by this information! There is a name for it.

The Glutamine continued/s to be a staple in the health of my body. I had a chance to ask the Gastroentonologist  about Glutamine; and he had never heard of it. This expert, who had studied for over 40 years, had not heard of any research being done on it. This was interesting to me, as I was wondering, if anyone had heard of it before….in Canada!? I felt like I was taking crazy pills….but nope! True story. Glutamine remains fine print in some products here, but it is not prescribed for patients who are wasting, or have toxicity, as it helps remove the ammonia from Lactic Acid or liver toxicity. Everyone has Glutamine in it, and may be deficient, if they are sick, have had trauma, etc. This made sense to me, in so many ways, as I was talking to people about prebiotics over 15 years ago, and they thought I was crazy! Now, everything, has “bacteria for digestion” in it.

So almost a year has passed since that incident, and I am happy it is gone, but I am still, not 100%. Dealing with inflammation, and pain still, that has gone without a follow up…..back to the drawing board!

 

PS: Look for the “good” doctor, Mr. P. Nemechek’s information on Glutamine! He said share! So, I will do so. I also have gotten over 8 people taking Glutamine! And they all have benefited from it. Pass it on!

Circles We Sit In

Ruth Burr Blog

I think about the work that is done within our structured time, and the work done outside the confinements of that space…having the privilege of sitting in different circles. As a PAW, I wear many hats, like many women I know. Mothers, sisters, children, adult children, caregivers, financial secure one, etc..there are many expectations.

Many women I know work hard at what ever they do, as men do! One thing I have noticed is the people who spend much time, in mystic wonder; of “those others”. We have these opportunities to blend ourselves amongst one another, when we attend structured times. Much happens, outside those structured time, as one woman wisely said recently, as we sat in a “Circle”! It was a beautiful circle, that I had not had the pleasure of sitting in. A dear one, and a new friend! At one time, this dear one, was (and always will be) a mentor, Aloha, is all I say to her! Mahalo! Gilakasla! Without this amazing woman, I would have less “fight” in me! She taught me so many things, just by WHO she IS! Herself, unbridled, poignant, with a punched-me-in-my-face honesty, that I had not seen before.

She did what she wanted, said what she thought, and that was that! In a society, where the violence against, women goes unchallenged, especially, Aboriginal Women and Girls in Canada. I learned and carried this with me, as I fumbled for my own journey. This weekend, I got to sit with her and others’, it was magnificent. The stories we shared, and the love we exchanged was TOO big for the area we were sitting in. It wasn’t until my friend said reminded us, we are not chattel. Yes, we are there, you get some amazing knowledge extraction, by offering “information”, but much of it gathers, more than it shares, some say. I suppose if you analyzed it with an unbiased, evaluation, with a rigorous diagnostic tool aka transparency, evaluation, honesty, ethics…I suppose it was being “hushed” that could be perceived as “disrespectful” and the outings, some do, can be seen as a “free loader”, but more often than not, it is the same people that are running many Non-governmental/Charitable Organizations (NGO), like, AIDS Service Organizations (ASO’s), and have very little time to strategize with peers in their own meaningful way!

One corner stone of the HIV/AIDS Movement is DIGNITY! Where do people find dignity, if all they are doing is offering only a part of themselves. The time many offer, is chosen, how amazing, to have such generous humans! We are truly blessed to have peers who offer their time, to run the broken wheels of project funding and to be a voice to those who have no voice! I honestly, see how many more work so much harder, each day, as funding, is dangled so dangerously over the heads, of sick people. Who knows, if one thing that works for one person, is the very thing, that becomes no longer relevant.

This is where you become a Warrior! You manoeuvre as best as you can, as you may in the wild! Sensitive, aware, and ready to respond to what offends harms, or is going to kill you! It is a natural instinct we all have, survival. This looks like many things to many people…..having the full picture is important, I have found in my own world. I have many questions, and I have to document many things, from a variety of systems, either chosen or forced. That is a full time job! It’s all good, I pretty much have it down to a manageable system! This is going to be a great year, bringing www.thepawden.com onto the land.