A Safe Online Place to Explore HIV/AIDS by and for Aboriginal People
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.
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, …read in detail
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….
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!
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.