Fighting for Health: Medical Abandonment

I detest when I accidentally align something in my world with something that is being experienced in the world. For example, I notice I am out of essential food staples for my family such as milk and cereal requiring me to make a last minute run to the grocery store. When I get to the grocery story, say on a Wednesday night, it's brimming with people and the milk is COMPLETELY wiped out because "a storm" is predicted for that night or the next day.   Talking about health and wellness is January is also such a situation. Alas, I do not recall the last time I was not seeking answers and striving for wellness- it was absolutely before I was a mother.

The past 8 weeks, in particular this past week (ok, last 48 hours since it's only Tuesday), have been medically frustrating.  I sought Chiropractic treatment for a wonky knee thing that popped up, which revealed underlying spinal issues that required addressing and had the potential to remediate the knee issue. The spinal issues were primarily in my upper cervical spine (C2), my thoracic spine was/is not interested in being returned to functional fluidity and my lower back issues seem to stem from a physical development abnormality.  While Chiropractic care has allowed a shoulder to stop dislocating, has reactivated facial nerves that had previously been blocked & is opening my sinuses, it has also activated new pains while forward bending, sitting for extended periods of time, reading & anything where I look down for more than a few minutes.  The SHINING STAR of Chiropractic care is that I learned a breast reduction is medically in order to allow my cervical spine to retain it's natural position and allow my arms to discontinue radiating numbness on the regular.

I decided that since plastic surgery will absolutely ensure we meet our medical deductible this plan year, it's time to buckle down and revisit my "mystery illness."  Last time I attempted to get to the roots of my physical and mental illness we figured out I  REALLY do have some immune function issues that need lab-work to iron out and chase it  down.  So, I went to this new-to-me office that I had been to once before for an unrelated issue and laid out where I am, where I would like to be, and what testing I would LOVE to have ordered to check where I am in reference to where I was three years ago when I started this process.  Instead of ordering the tests themselves this 'Primary Care' office referred me to multiple specialists (which will all require their own specialist co-pay) instead of ordering the blood-work and testing themselves. What is the point of HMO if your PCP will not manage your care? (Anyway, different rant there.)

I spoke to my Chiropractor about the new sensations and pains in my body & my body in general. The Chiropractor suggested some blood-work to check thyroid function & a few other things. Went back to the PCP who ordered baseline blood-work plus the thyroid tests requested by the Chiropractor.  I asked for immunoglobulins to be ordered (because No ONE should have Shingles four times in fourteen months- in Nov, Feb, Dec, & January.) The blood-work was taken less than 50 hours before the last Shingles outbreak, when the viral load is high, and my blood-work did not even remotely show any signs of fighting anything. To which my PCP proclaimed, your blood-work is normal. Um, NOPE, there should elevated levels of blood cells that fight viruses and infections and there is nothing- that is NOT normal.  Also, some of the tests are missing units of measurement- so, depending on the unit of measurement it's absolutely on the low end of normal or 100% not normal. Further, they actually didn't order my immunoglobulin blood-work to compare it. He asked me to send him the science on the neurotransmitter testing that could help us identify which interventions might help me level out my emotions. I was SO frustrated- that was last week.

Yesterday I went to Boston to see my retina specialist and he is not just any retina specialist.  I went to a retina specialist who is an attending for Harvard Medical School's Ophthalmology Residents & has multiple degrees (I also discovered I went to middle school with him the 1st time I saw him- small world!), who examined my eye and said, "This is weird. I can treat you, but I think you should also go see THE Guy for these things." THE guy is an older greek MD, who I am guessing is in his late 70's or mid 80's... there are foreign dignitaries and people with suitcases from all around the world who transfer in to see this guy. If this Dr. does not know what is going on, no one does.  The first time I saw him he looked at my eye and says, "This is strange. It's very weird. Ok. Do NOT miss an appointment, please come back in 6 months. This could change and spread to your whole body without you knowing, do not miss an appointment."  I kept my first four appointments, then missed two appointments before yesterday; it had been 18 months since I saw him.  The "thing" (an a-melanotic lesion with it's own blood supply) in my retina had grown .03 (thankfully, very little), but the funky ghost like outlines of things I have been seeing, seem to originate from a new something, not sure what, in my other eye.  This other thing in my eye is so new that we had no photos to compare it to. <Fun.>

While waiting to get the images of my retina taken my PCP's office called on my cell phone to tell me that my oncology referral for breast cancer genetic testing was approved by my insurance but the oncology department would not accept it because I have no "indicators" and I just needed to get a mammogram.  So, I got to explain, AGAIN that the reason the test is being ordered is because I will NEVER, ever, EVER being going to get a Mammogram, but I am going to have a breast reduction and it just makes sense to have the genetic testing done BEFORE the surgery because IF I have the breast cancer gene, then the plastic surgeon can address both things at one time.  I then got to explain that the referral to Oncology was actually supposed to be to hematology for the Immunoglobulins the PCP didn't want to touch. They said they would do some research because they did not have notes on that.  I then had photos of both my retinas taken.

In the afternoon, I had my mid-treatment consultation with my Chiropractor, which essentially boiled down to:  You're not getting better, you may in fact be getting worse from this treatment. I do not ever see this in my practice and it should not be the case.  I am discharging you from care until you see your Primary Care doctor and get some answers as to why your blood-work looks normal but you clearly aren't well.  (Never-mind that the only time I feel well is the handful of hours after being adjusted.) I suspect you need a vascular study & a deeper work-up to find some sort of systemic lupus, autoimmune or MS.   So, I told her I have been seeing my PCP and trying to investigate, but it's been a challenge. My Chiropractor suggested a few alternate PCPs to try working with.

This morning my PCP's office called to get more details about the genetic test referral. I explained again the no mammogram, breast reduction, helpful information worth having thing and explained the insurance will likely not pay for it, but it doesn't matter, I just need the dang test ordered so I can have an answer.  About an hour after speaking to my PCP's nurse my PCP messaged me back that, after reviewing the science on the Neurotransmitter testing,  he is not willing to order additional testing, nor to refer me to the practitioners who are set up to order the testing suggested by my Chiropractor.  

I have been down this road before. This about the point where I get diagnosed as "fat. Being Morbidly obese and suffering the resulting consequences" and sometimes of being a hypochondriac. However, this weight came on suddenly along side a loss of 3/4 of my hair, 15 years ago and short of starvation and exercise anorexia, it has not come off or stayed off, this weight is not the cause, it is a symptom.

So, my eye issue is continuing/ progressing, my chiropractor discharged me (which really is the most ethical thing to do but at the moment hurts my heart and leaves with me with pain I did not have when beginning to see her), and my PCP will not order additional testing.  Our health-care system is broken and my spirit feels the same way.   However, I looked up the Naturopath who is set up for the neurotransmitter testing and while she can not be a primary care practitioner according to my insurance plan, she is a provider and I can go see her.  While on the phone with my insurance I did switch my PCP to a provider suggested by my Chiropractor.  Tomorrow I will call the new PCP and schedule myself an appointment. If the new PCP will help and be on team "solve the mystery," I'll have a place to transfer the care of my children.... that or we'll just have to go out of pocket to the Naturopath.

I can NOT believe that between our portion and my husband's employers portion that we pay $1500/month to have to fight THIS hard for medical help.  I am trudging through each day, striving to find joy and muster up the energy to literally do ANYTHING and it is HARD most days.  So, I'm employing this blog to express my struggles, celebrate my victories, share my thoughts and insights in hopes that getting out all these things that have been weighing on me will free up space for me to live, rock the end of my schooling, & allow me to rise up and meet the Health & Wellness vision I strive to hold and maintain as shared above.

If we have our Health we have the potential for ANYTHING. Without our health, it is difficult to maintain anything. May you ALL make the choices and have the health and wellness to live your best  life.