...worth a thousand words!
I decided that I should put something up here (other than cryptic comments on my feed) for those of you who are sincerely wondering where I am and what I'm up to... your comments, queries and prayers of the last couple of weeks are GREATLY appreciated!
So you get the 'words' anyway...
The thing is, because I have had on-going and chronic health issues ALL of my life (starting 51 years ago the day I was born a twin and nearly three months premature... you know... before prenatal medicine was invented) - most of these issues remain unexplained, or less than effectively treated - and my own personal health circus just isn't something upon which I choose to focus most of the time (and it's long since ceased to factor into how I choose to define myself or my life), and I resent the times when I actually must focus upon it... like now.
However, here is where I must focus for now, like it, or not.
Nothing about getting 'well' is going to be quick for me (it's already been 51 years, LOL), and it is quite possible I will never be 'mended'... I'm just hoping for functional wellness at this point... for me that means being able to live my life with joy and vitality without having to take four out of seven days 'off'... and a reasonable expectation for growing much older! ...Which I did manage to achieve for a brief period in my thirties... more than five years, less than ten... and I was approaching this place again this past September to January. Then things changed 'back'.
The precipitating events to my current odessy included an appointment with an endocrinologist this past November, my annual physical mid-January, and the results of my blood/urine tests, coupled with my own determination to get within a normal weight range and finally feel 'well' more often than not... I am just not willing to limp through my life any longer and, truthfully, I was getting fearful... my dad had his first stroke at age 55 (and though he's had 2 strokes since he's an active, reasonably well 78 year old), my maternal grandmother died of a sudden heart attack at age 62, and my maternal uncle had quadruple by-pass surgery before age 65... only because he asked for a stress test (he was asymptomatic for heart disease). I wanted a thorough work-up so I have a baseline picture in all areas, the goal being to improve anything that needs to improve, and to make a plan to address my own life-time of malaise. Additionally and inexplicably, mid-February I once again literally stopped sleeping, stopped losing weight, and got some sketchy results back from some of my tests (I was actually feeling BETTER than I had felt in a very long time).
I've had a stress test (no suspicion of problems prior to, but erratic blood pressure spikes during the test itself, so I'm waiting for an echocardiogram... I've had an 'unconcerning' murmur since I was born), I've been ultrasounded every which way (bladder, kidneys, with thyroid to be repeated in April), had a mammogram (fine), had a PAP test (unexplained cells and blood though I haven't had a period in six months repeat test in April), urine (significant blood discovered, but no leukocytes... read: blood with no infection, which means kidneys, not bladder) and stool samples taken (blood... waiting for my colonoscopy... my doctor and I don't agree about me needing one), had what seems like gallons of blood drawn... all tests are 'normal' except for my prolactin which shouldn't be elevated unless one is breast-feeding... I'm not (this is a possible pituitary tumour indicator).
Essentially, there is weirdness all over the map... which, in itself, isn't strange for my body... but it's weirdness to which doctors apparently pay attention (as opposed to the things about which I've been concerned for YEARS!!!).
The list of 'bad guys' needing to be addressed include my kidneys, my BP, my liver function, my proclatin levels, my weight... it has got to come OFF sooner than later at this point (my primary agenda - in conflict with my doctor - because I feel many other things would naturally resolve to a degree if I were in a 'normal' weight range), but after the 40 pound loss it just won't budge even though I am still doing everything I was doing to lose the 40 pounds and then some (I am still, always and evermore a SPARKling!)... and my INSOMNIA!!!!! Lack of sleep seems to be a critical player in all of this (and, I believe and have for my whole life believed, the root symptom of most of my health issues - I started having sleep issues as a teenager once I got my period, to lesser and greater degrees throughout my life... I don't think it's a coincidence that the weight stopped coming off as soon as the insomnia returned... I was sleeping well from September through January). And then there are my ever-present thyroid cysts which don't seem to really concern any doctors because all of my thyroid blood levels come back 'normal'... yet why are they there (incidentally my grandmother who died young of the asymptomatic heart attack also had a goitre... but the endocrinologist dismissed this with the fact that many women who immigrated from Slovakia had goitres due to lack of iodized salt in their diet... yet I didn't immigrate from anywhere and have always eaten a lot of salt, so how does she explain MY goitre... seems too 'coincidental' to me)? The endocrinologist doesn't even seem inspired to ask questions. "?!" Aren't specialists supposed to be curious?
Right now, some of my on-going issues are much worse (I currently have IBS symptoms for HELL... for the last 20 years I've had this completely controlled to the point where it had become a non-issue), my insomnia is raging, to say the least (and as a result, I'm having some minor headache issues), and my BP is anything but stable (for the last four years it has been spiking dramatically bi-monthly with hormonal fluctuations (with ovulation and menses), but the doctor doesn't think my hormones have anything to do with it... HA!!!).
There have been some absolutely terrifying moments (my kidneys all but shut down for about 48 hours two weeks ago... I stopped peeing and literally gained 10 pounds in a matter of hours, which increased to 15 over the course of a day... which put my blood pressure through the roof... I'm surprised my ears didn't literally blow off, and I'm not crazy about the subtle tumour indicators, but I'm hanging in there, and I think moving toward some real answers.
And, there are bright spots in the last two weeks too (since I've stepped out of the treatment box and taken things into my own hands... now that I'm done freaking out... I DID freak out for a bit)... miraculous even! Some of my symptoms - chronic mouth sores, skin issues, perpetually blocked sinuses - are just simply GONE, since September headaches are a minor annoyance compared to what they used to be (I haven't taken anything for any sort of pain for six months now, whereas prior to this, I took pain medication like breath mints), the recession in my gums is reversing and all of the plaque fell off my teeth, and I feel a greater sense of control... though this is probably delusional on my part, LOL!
The kicker is that I have to fix all of this without conventional medication (I feel exponentially worse with every prescription I've tried in the last two months... I think my liver and kidneys can't handle the toxicity)... and I'm having a little success.
Again, since I've stepped out of the treatment box and taken things into my own hands, in less than two weeks, with extremely non-conventional methods, I've managed to get my BP down into normal and nearing optimum levels (under 120/80 from 155-211/95-100) and I'm keeping it there (I check it three times a day), my prolactin numbers have decreased by half, my kidneys are back on the job (no blood in my last urine test five days ago) and, even though I'm either not sleeping at all or sleeping very poorly (since mid-February), I have some really good days, and my bad days aren't anywhere near as bad as they were prior to September... no crippling headaches (unless I spend too much time on the computer with no sleep... so what time I do spend on the computer right now is used for research. I am my own full-time job right now).
The gift in all of this is that I've found the specialist who I believe will help me finally find the magic solutions, if there are any to be found. At the very least, I believe all of the debilitating and life threatening issues (insomnia, BP, stable blood lipids... mine have fluctuated wildly over the last four years, IBS) will be resolved.
She is a compounding pharmacist specializing in reducing toxicity (which ironically enough can increase with weight loss in people who are metabolically compromised), balancing hormones (previously unknown to me, hormones play a major role in regulating blood lipids and BP), and her focus is wellness. She takes a systemic, individualized and holistic approach, so part of the process is figuring out where all of my symptoms together are pointing... something no doctor will take the time to do for me... they've been treating me symptomatically for the whole of my life, and it is just not working. Incidentally, the pharmacist sees my weight as a symptom, rather than my 'problem' and feels that addressing the mineral deficiencies and my hormone insufficiencies/imbalances will cause my weight to resolve itself without much trouble. Unlike with the endocrinologist and my doctor, it is so refreshing to not be treated like a delusional fat person... the endocrinologist handed me a prescription for Metformin (a treatment for metabolic syndrome) and refused to discuss any of my concerns or experience... even though I didn't even come close to meeting the criteria for 'metabolic syndrome'... other than being fat... and even though I had already lost 25 pounds at that time.
A few things have become very clear in the last month: without a doubt, I am severely depleted in minerals and iodine (an absorption/toxicity issue it seems likely due to imbalances), so while detoxifying my liver, we're trying to address these imbalances. Specifically and critically at this point, it appears I need to get a lot more magnesium, but this is proving difficult as my bowels don't like it. The other thing that is certain is I don't metabolize anything in a 'normal' fashion (also hormone controlled - hence the severe backlash reactions to any/every medication) so anything I do, I have to do SLOWLY so as to not throw my body into a never-ending backlash reaction loop. The final thing is that while my blood levels for absolutely EVERYTHING (except for the prolactin) is 'NORMAL' (as has been the case all of my life) this woman believes that we need to find my own personal and individualized 'optimum and balanced' levels of all hormones and blood components... and, clearly, where I'm at isn't that. In every instance, while my levels are within normal *range* I am at the very bottom or the very top of every measurable element. The final thing that is certain is that I am doing myself more harm than good by continuing to PUSH against my limitations as hard as I do just to have a bit of the life I so want for myself and my husband and daughter. So, even when I feel comparatively 'well' I have to force myself to do less, rest more, and allow some of that available energy to heal my own body. I'm actually forcing myself to stop pushing myself (I now purposefully breathe 5 times a day, LOL... I'm finding I like it very much and I feel the positive impact in my body)... so no pushing is definitely part of the solution.
My friend, Tina, made a couple of pertinent observations:
"How in the world can so many things be "out of whack" at the same time???"
...Because all my life, nobody has been looking for a root cause, and until that is discovered and addressed, my body will continue to deteriorate. The question that only *I* have been asking for years is: "what system/mechanism in the body impacts all other systems and can potentially produce these issues?" ...and the answer - as I have ALWAYS suspected and now KNOW - is hormones... right down to the BP and blood lipids, kidneys and liver... and I now know that HORMONES ARE MANAGED IN THE GUT.
"It seems so strange that the doctors are willing to run all of those tests, and yet don't seem the least bit interested in finding the cause for the results!"
It does, doesn't it, LOL! I don't believe that diagnosing is actually a science... I think a good diagnostician has a willingness to 'see' beyond the obvious and has an openness to possibilities. My experience is that the vast majority of doctors can't 'see' beyond a very narrow framework, nor are they the least bit curious beyond the obvious, so people like me, whose symptoms don't easily fit into any kind of a recognisable medical 'box', whose symptoms are subtle and varied and *let's face it* rather overwhelming and all over the map, aren't helped no matter how many tests they run... because the problem is that doctors simply look at each and every symptom as an isolated entity and problem (and throw drugs at me... thus over-simplifying and over-complicating things all at the same time), and that just isn't the case... nobody has been looking for a root cause (except now my hormone specialist).... and to complicate matters, my blood levels in all areas (with the recent exception of the prolactin) have all my life come back within 'normal range'... and you know what doctors say when the test results don't support the reality of the 'patient's' presenting symptoms or expressed 'reality' (read: I am a hypochondriacal psych case). As for the other stuff, the follow-ups and testing continue. I'm in a doctor's office at least twice a week right now.... And I will keep listening to my body, and I will not stop pursuing wellness!
...And while I'm on the topic, here's another blog by my friend Michael, very much worth reading:
'The Best tracker in the World'
So, there you have it. I'm not sure just when I'll be around here more (though I am reading and keeping tabs as time and energy allow), but you are all safely gathered into my heart and prayers!
I pray your Via Dolorosa is blessed... that you arise to new life in whatever way you need it this next Easter Sunday morning! Throughout this Lenten season may the joy and victory of the risen Lord be yours, moment by moment, in a very personal way... may you always be overwhelmed by the grace of God, rather than by the cares of life!
May God abundantly bless you, and those you love, in every way that you require. May he hold you gently in the palm of his hand in a very personal way, and may you rest in the fullness of his love, his grace, his strength, his wisdom, his rescue, his redemption, his healing, his inspiration, his restoration and his mercy as you require it! May you carry in your heart always an extra special awareness of God's great love for you; and as you rise to new life with our Lord and Savior, may you feel his sweet and gentle touch upon your life, and may you see his miracles all around you. I pray in the name of Jesus Christ, our Lord. Amen!
P.S. If anyone reading is also struggling with health issues... DON'T GIVE UP on yourself! *Wellness is our birthright* and for those of us who have to pursue it like we would a thief in the night, the victory is that much sweeter!!! Also, if anyone is actually interested in the unconventional methods making a difference in my life, let me know... I'll provide a more detailed account here! First and foremost, if you suspect your hormones are any part of your problems, get thee to a compounding pharmacist (a doctor who supports this approach is nice, but not necessary)!!!
You can search for one here:
Alligned and Well
"I looked out and listened to the quiet beauty of nature in the springtime and realized that I, like nature, have this amazing PRESENT to fill with mindfulness, and my sense of quiet desperation diminished and I began looking at how to approach the day in grace and beauty." VALERIE MAHA
"We can't stop bad things from happening, but we can stop our relentless focus on how things were or how we want them to be, and develop a deeper appreciation for what we have now." HARRIET LERNER, 'Dance of Fear'
"Sooner or later the universe sends everybody a crash course in vulnerability.... We can't avoid fear and suffering, but we can choose to encounter it in ways that will help us to feel connected and whole again." HARRIET LERNER, 'Dance of Fear'
(quote by CHRISTINE MASON MILLER)
...Because YOU can "do it afraid and watch fear be annihilated!" BUFFEDSTUFF---
JUST DO IT.
'BEFORE' Pictures (May 31, 2009 - September, 2011) & Continuing PROGRESS (February 2012)!
(I'm now keeping these right under my nose... in addition to being part of every blog I post, they are printed off and taped to my bedroom mirror)
Measurements, Musings & Motivation to MOVE!
(UPDATED/rewritten: JUNE, 2012)
I've Reached My Goal Weight!!!!!!!
NOTE: My weight tracker is NOT a truthful representation of my weight. Instead, I am using it as a tool to help me visualize my goal as though it's already been achieved!
UNTIL. (My 'Just Do It' blog)
DONE Girl Love...
(the footsteps into which I place my own feet)
Words CAN Be Enough... page 2