Thoughts on the Day 4/26/18

Every next level of your life will demand a different version of you...

When we level up, we bring all that we have been to help create that new version of ourselves.  The reality is that we all change with time, circumstances, good things, the hard and while those changes may be so small as to seem imperceptible, those subtle shifts alter who you were before you walked through what was on your path.  

When I look back at my medical mystery tour (soon to be four years in June), my journey started with conventional medicine.  What I learned the hard way was something I knew before on a different level, but this time conventional medicine and my doctor failed me.  While his actions helped to save my life in the beginning, his refusal to listen to my feedback about the side effects I was having from the med he prescribed and his insistence that I stay on the med put me in further jeopardy.  His refusal to take me seriously about the side effects, his admittance that he didn't realize that some of what I was telling him was a side effect (I offered to send him links for his review) and the fact that he didn't truly listen to me and instead chose to keep me on a med I was having a severe allergic reaction to started me on a downward spiral.  Not to mention that I learned about scores of class action law suits surrounding the drug (Xarelto) and the fact that there isn't an antidote for it.  Yes a different doctor told me about that.  I was lucky I didn't end up dead.

Instead what I did get gifted with as a result of his negligence was 2+ years of pain, fear, more conventional medicine and care that further destroyed my health and at one point I seriously was contemplating suicide.  Luckily for me a friend pointed out that prednisone can totally fuck with your head and cause those kinds of thoughts and the fact that my histamine levels were so high and the hives so bad for so long, I had lost all hope of ever getting better.  I had just spent 8 months getting $4000.00 injections each month, to no avail.  

What kept me going was the determination and resolute belief that there had to be a better way than just covering up the symptoms with one more nasty ass med that was worse than the one before it.  I knew that in order to heal I had to find the visionary healthcare professional that would look for the root cause resolution and use the healing power of food, supplements and low impact meds to help me heal.  There were many who didn't believe that I knew my own body, doctors who told me they knew better than I did what was right for my own body.  Family and friends who didn't understand just how bad it really was and I continued to retreat in an effort to just survive another day on little sleep and the constant wonder of just how bad the day was going be.

So I called on something I wrote to myself several years ago to remind myself that I did in fact truly know my own body, my own strength and what was right for me...  "I'm gathering everyday the strength, power, endurance and wisdom to slay the naysayers."  It kept me moving toward what I knew in my gut, my poor destroyed gut, that I had to be determined and dauntless to get past that histamine hell and start to heal.  It took a little over two years but I did finally find the right care, the right med, the right foods, the right supplements and I have been improving every day ever since.  There have been a few small setbacks but as of right now it is looking like I will be able to start taking lower doses of my current med and eventually be able to get off the med completely. 

This was a path of discovery that I never would have willingly signed on for, something I wouldn't have wished on my worst enemy, but something evidently the Universe deemed necessary for me to experience.  This medical mystery tour honed my desire to overcome and rise to the task of boldly taking charge of my own health and being the catalyst for my own healing.  My functional medical specialist told me at my last visit that she always loves to see me because I am proof to her that functional medicine does in fact work.  I share my story because I hope it might help someone else suffering with auto immune issues, allergy issues and perhaps lack of quality care find the help that can change their life like is has mine.  Perhaps even if you are not suffering from a chronic health condition, there might be something in my story that sparks something in your to rise to whatever task is before you and get past what may be holding you back.  That my story may be a catalyst for change in your life on any level that you seek.  

The more we share our stories, the more we learn about one another, the more wisdom is shared and the better chance for connection.  It is what spurred me to create my website and share not only my stories but stories of others, because we all deserve to be seen, heard, supported and celebrated.

XO

Titanium

Let's talk about supplements

I'm going to start this post off by saying that I am not a medical professional and everything I have learned has been trial and error for my particular body while working with my specialists and honestly following my gut instincts.  Funny that, histamine comes from the gut, gut instincts and getting beyond the fear and anxiety of eating.  So anything you see me post about when it comes to food or supplements or even meds, please, please remember to err on the side of caution and speak with your own medical professionals and do what feels right for you and your body.  If there is anything I have learned besides the fact that I am an outlier medically, is that every single person reacts differently to food, medicine, supplements and environment.  It comes down to trusting yourself and fully listening to your body.  My phrase that I have in my head every day, 'they call it practicing medicine for a reason'...  YOU are the only one who truly knows your body and how you feel and you know what feels right and what doesn't.  It takes practice and it takes time to tune in and really pay attention.  So now that that is out of the way, here goes...

I'll admit that I am a person who previous to my medical mystery tours had a hard time just remembering to take my damn daily vitamins.  Most days I just didn't....  With both of these medical mystery tours, not only do I have to remember to take my meds, I also have to remember to take my supplements.

I have done trial and error as I mentioned and honestly I never felt and still don't that they will completely heal me.  That being said I have learned that some of them do make me feel better and I notice a difference when I don't take them.  I have taken some recommended by my naturopath, some suggested by my FM specialist and some I read about in the book, Medical Medium by Anthony William.  If you haven't read his book yet I would offer that it might be worth your time.  Now I admit some of it might seem a little far fetched for some, but when I found it there was one sentence in the beginning that had me sobbing with relief.  He reassured in that sentence that I didn't cause this to happen and that I am not a bad person who deserved what I was struggling with.  This was after almost two years of dealing with chronic daily hives, the blood clot and just a whole lot of feeling like, being scared, anxiety about food and just general fucking anxiety.  He does have some research to back his claims and honestly while it didn't really have that exact info about my situation it did have some info that helped me feel I was taking some control over my own health and gave me some things to try.

If you go to my product link page you will see some links to some of what I am taking, I will be updating these shortly with my most recent additions.  Sorry for the huge photos, I still need to work those out.  Yes if you click the link it will provide me with a small commission, no you don't have to do anything, it all comes from the vendors and it helps me to fund my site, so I would appreciate it if you did use the links if you are so inclined.

Here is the list:

Curcumin, an anti inflammatory and I find that it really helps with some of the pain as well.

Probiotic, this one is so good and is a dairy free version

Inositol, for liver function and cellular detox, a side note, this one can make you sleepy so take it night.  I learned this from taking it one morning and wondering why I felt so tired...

Red Mineral Algae, this is the way I get magnesium that doesn't have any citrate in it, that stuff wreaks havoc on my digestion and the hives.

I also take Quercetin, without bromelain as I learned that bromelain is made from pineapple which is considered citrus and well that makes my hives flare like nobodies business.

L-Lysine 1000mg caps for membrane health and also supporting the central nervous system.

The most recent addition has been collagen peptides, I have tried both the Vital Proteins brand and the newest one from Wild Foods Co.  Here is what I have learned about collagen and it is not the vegetarian version, it comes from the hides, I tried the other version and it didn't get me the same results.  I might mention I am not fully vegetarian or vegan for that matter, but that is for another post.  What I have found is this, I had some residual numbness and tingling in my toes and especially my right arm and hand, but both arms tend to get numb when I sleep which they never did before all of this.  The collagen is a great support for helping with gut health, namely leaky gut and since histamine comes from the gut there is that connection.  Also though I found that the amino acids in it have helped tremendously with the numbness and tingling.  I didn't really realize how much until I ran out of it one day, I noticed that my left hand had tingles and also my toes.  The next day my package of the new order arrived and drank it in my ginger elixir and the numbness subsided within an hour.  That shit works, at least for me!!  I originally got it because I read it was good for joint and connective tissue health and I figured it would help with leaching process and it does that as well.

There are other things I have tried, I also take a biotin supplement presently and during the winter I take Vitamin D3 with K.  Again work with your medical professionals and make sure that anything you are taking doesn't clash with any meds you might be taking, if you are unsure, I would offer that you find a good pharmacist you trust and speak with them, they know so much more than any doctor about meds, side effects etc.  My pharmacist and compounding pharmacist are my best friends.

Also I drink an elixir I make every morning that I feel really helps support my healing process and is the way I get my collagen as well.  I take fresh ginger, about an inch slice or so and scrape the peel off, slice it and mash it.  I boil water and dump the ginger in my giant tea cup and add a little honey, my scoop of collagen, a coin of food grade cocoa butter (Wild Foods Co), a little tiny bit of maca root powder (have to be careful with this, it interacts with my synthroid), a 1/2 tsp of rishi mushroom powder and pour the boiling water over and let it steep.  I then add some of my homemade coconut milk that has a little honey and some vanilla powder and stir it up and drink it down.  I started out with the just the ginger and honey, added the coconut milk and the rest of it came with time.  It's very soothing and a great way to start my day.

If you have questions, hit me up on my contact page and I will do my best to answer them!!

Ciao

Hello and welcome

I'm here sharing my journey navigating the wild waters of the medical field, trying to get an accurate diagnosis and find my way back to my full, healthy life.  It's an ongoing story and this isn't the first time I have had to navigate these waters.  My first foray was back in October 2007 and lasted until July 2009.  A very different reason and experience than the journey I am on now.  I will get to that one in a different post, but for now I want to share what started me on this path I am currently on. Please keep in my mind I am adult and I use adult, aka salty language regularly.  This will be a long a post, so hang in there while I set the stage and remember, they call it practicing medicine for a reason..

The last three years have been what I refer to as my "medical mystery tour".  It all started in May of 2014 when I started taking some hormones to help regulate my monthly cycle and heavy bleeding I was having.  Those hormones caused me to as my doctor said, 'throw a blood clot' ten days after starting to take them.  At that point I needed to go on a blood thinner, had already suffered heavy blood loss and was still bleeding heavily.  Needless to say it was a whirlwind of doctor visits, ultra sounds and some unknowns.  Further tests showed I not only had a pollup on my cervix but I also had fibroids.  Since I was still bleeding so heavily, my internist and OB/gyn determined that an ablation was the best option to stop the bleeding and allow me to get back on the blood thinner as soon as possible.  Tests showed my hematocrit was at 12 and my doctors were surprised I could get out of bed, let alone go to work and still teach yoga.  Looking back I think I was fortunate that I didn't realize just how sick I was, but the sobering fact that I could have died had that clot moved became apparent in the doctors office after the ultra sound confirmed the spot in my lower left leg was a massive clot. I thought it was muscular and was massaging it and I had managed to shove further down my leg luckily.  If it had moved in the other direction I would died to death.  Looking square in the face of my mortality was pretty frightening and on the trip home I fell apart with how overwhelming it all was.

The surgery was a success, the bleeding stopped, I went back on the blood thinner and I figured everything would be fine in roughly 90 days if the meds worked as my internist described.  He prescribed a drug, Xarelto and at the time the Universe was trying to give me the info that it wasn't the drug for me but I think I was too sick to pay attention.  It was horribly expensive, my insurance company at the time said they would not cover the cost and I was faced with having to go a different path with the older method which is basically rat poison. My internist pulled some strings and got me enough samples that I could be covered for the 90 days he wanted to start with.  Almost immediately I had a stomach ache and when I called my internist to tell him, he told me to take Zantc.  The thing is, it wasn't acid reflux, it was an actual pain in my belly, every single day I was on that awful med.  Time went on and 3 weeks into the med I noticed that my toes were numb and it was climbing up my feet to my ankles and from my fingers to my wrists.  I luckily found a web site where other people were taking it that had a message posting service and learned that the bloating I was also feeling, strange muscle aches and pains and the numbness were not just me.  I called my internist again to give him the update and the response was that he wanted to keep me on the med.  I called three weeks later to inform him that I was now numb to both knees and my elbows and had horrible stomach bloating and pain every day.  He still kept me on the med.  I started learning more and seeing things about class action suits, brain bleeds, stomach bleeds, all things that scared the ever loving shit out of me while I was walking around as a hemophiliac.  After 90 days I called and told him I was numb to both hips and both shoulders and that I would not be taking the meds for one more day.  I was told to come in for an ultra sound to see what the status was of the blood clot.

The ultra sound showed the clot had shrunken in size and dropped down into my ankle and the tech informed me that at that point a common aspirin every day would most likely be the best treatment to clear it up.  I walked back into the internists office and told him I wouldn't be taking any more Xarelto and how angry I was that he had not listened to me about the side effects I was having and I hoped that I didn't have any lasting damage because he refused to listen to me.  At that point he admitted that I hadn't tolerated the drug from the beginning.  No shit, REALLY...  He put me on aspirin every day and I walked out the door and never went back. This was a hard space to navigate, this internist has been treating most of my family for over 25 years, saved my father's life, helped me with the first medical mystery tour I dealt with and now I was livid with how this all played out.  He refused to take my reactions seriously, treated me like I didn't know my own body and neglected to observe that I was having a severe allergic reaction to a relatively new and untried med.

I chose to move on and do the work to get back my health, found a naturopath and started trying to rebuild my gut health in particular as well as my overall health due to blood loss and trauma.  She started me on warm water with lemon every day and then switched me to lime water as she felt it was better.  I was still having numbness in my limbs and I noticed that I started to have this red itchy rash, that started in small patches and over the following months spread like wildfire.  Never having had hives before I didn't realize until months later that was what I was dealing with as the naturopath was prescribing expensive supplements and treatments to try to treat my numbness.  I finally made it into a dermatologist who informed me that I had chronic urticaria of unknown origin, or chronic hives and they couldn't tell me why. When I asked if it could be the result of having a severe allergic reaction to the Xarelto, he hedged, telling me I was having an autoimmune response and there was no way to know why.  He told me that it could be up to a year before they went away and one day I would wake up and they would be mostly gone.  He prescribed Zyrtec everyday, starting with one a day and upping if the hives progressed to a maximum of 4-5 a day.  Yes, you read that right 4-5, 24 hour Zyrtec a day.  Here I was once again following what a physician was prescribing in the conventional medical arena in the hopes it would help me get my life back.  This was April of 2015.

The hives continued to get worse and in a follow up with my new GP she said maybe it was time to see an allergist.  At this point I was taking Zyrtec 4 times a day and had been on a couple of rounds of prednisone in the hopes it would quell the hives.  The prednisone made it marginally better while I was taking it but once I tapered off the dosage they came back and usually worse.  By this point not one of my doctors had spoken to me about food, other than to say it wasn't what I was eating or coming into contact with that was causing the hives, that my body was having an autoimmune response.  I made it into an allergist about a month later, that was quick I learned.  The only reason I made it into the dermatologist so quickly was that I had a friend who helped me out, most wait times for both allergy and dermatologists is 6 months at a minimum.  Pretty scary when you are sick and have no idea why or what is causing it, I was lucky, well sort of.

The allergist was an older man who seemed to be relatively well informed and told me that it would be trial and error with multiple meds, upping the ante if the first round failed and if the second round failed it would be very expensive shots.  By this time I was having serious cognitive function issues as my body was flooded with mast cells dying and creating massive amounts of histamine.  I happened to type in chronic urticaria in google and the International Urticaria site came up with a histamine elimination diet.  This was the beginning of learning about foods and histamine, foods that are naturally high in histamine (spinach) and foods that create histamine when they hit your system (papaya).  I went on a brutal elimination diet, starting taking the new meds the allergist prescribed and two days later ended up in Urgent Care with my lower legs so swollen my feet turned blue and the on call doctor telling me I needed to be on a longer run of prednisone to try to get some relief.  I called the allergist the next day and his response was to keep me on prednisone for an indefinite period of time until things calmed down.  At that point none of the new meds he prescribed were doing anything and the attitude of just leaving me on prednisone was scary too.  I decided to seek out another allergist and it was suggested I go to UW Medicine in the hopes that someone there would have more information.  In the interim of finding a new allergist and getting in to see him, I had a weekly trip to Urgent Care for anaphylactic episodes and one where my blood pressure dropped so low I almost passed out.  It was scary as hell.

At this point I am going to stop and will post again with the continuation.  This all happened from June 2014 through early August 2015 and I still had no answers, was still fighting residual numbness, flooded with mast cells and histamine, loaded with inflammation and literally wanted to peel my skin off my body with a spoon if that meant the pain and itching would stop.

Stay tuned for the next installment of my Medical Mystery Tour.