Ehlers-Danlos Syndrome Hyper Mobility

I am going to take a moment to talk about something other than training my dogs.  I would like to talk about why I need a service dog.  I have been “sick” for a very long time.  As a child I had stomach problems and joint pain, my doctors could never really put it all together so I just sort of got brushed off.  These things run in my family in different types.  We have RA, Lupus, Gout, Marfans, Crohn’s, GERD, IBS, Osteoarthristis, and a host of other issues.  I have been tested for Juvenile Arthritis, Lupus, RA, and Gout many times.  I was eventually diagnosed with GERD and “growing pains” and sent on my way.  Over time I added a host of psychiatric diagnoses, Bipolar I, GAD, SAD, SPD, OCD, ODD.  I continued to have stomach and joint pain but I was ignored or told there was nothing that could be done.  There is something that goes on in the medical field that is not largely talked about, perhaps doctors do not realize they do it or perhaps they just don’t care about their biases.  You see, physicians will talk a great deal about non-compliance in their psychiatric patients but what they fail to mention (or perhaps address in themselves) is how they treat their patients.

 

No one believes the “crazy person.”  Sadly this is pretty much what it seems to come down to.  I spent years saying “my stomach hurts” only to hear about how anxiety causes that or just to be blown off completely.  I mentioned my joints and was ignored.  I stopped seeing primary care doctors completely and I won’t even mention how many psychiatrists treat their bipolar and anxiety patients.  When I first started having seizures my doctor told me it was probably anxiety, but just in case sent me to a neurologist to be looked at.  This is how most psychiatric patients are treated, it is always in your mind first.  As it happens, I have epilepsy and the “episodes” were in fact partial complex seizures not stress or anxiety at all (despite having a long list of psychiatric disorders and two special needs children, yes I get it I do have stress).

 

I had hoped treating the epilepsy would be the end of it.  Unfortunately that was just not the case.  Over time things have become progressively worse.  I had blamed many symptoms on my medication, dizziness, confusion, fatigue, falling, slow healing, bruising, tingling in my hands and feet.  While many of those are probably related to the medication some are not.  My stomach issues also continued to get worse, as did my joints.  I quit martial arts and have been unable to participate in many of the other activities I used to enjoy.  My joints hurt to much and I become fatigued quickly.  I found a new doctor and we started testing, again.

 

Now it would take several paragraphs to describe all of the medical mess I have been through in the last 8 months.  My initial blood work once again did not show RA, Lupus, or Gout but I was severely anemic.  I was referred out to a gastroenterologist and obgyn initially.  The OBGYN was quick to diagnose me and get me set for surgery.  My ablation was done to stop the bleeding, hopefully I will not need a hysterectomy and we are on watch as I have recurrent cysts (right now they are just painful not dangerous).  The process was far longer with the gastroenterologist though after thorough and invasive testing we came up with nothing more than IBS, Diverticulitis, capillaries in the small intestines, and Gastritis.  I had iron infusions and for right now my iron and blood counts are back to normal but my b12 is low so I’m taking B12 supplements.  My newest referral was to a rheumatologist.  He checked my blood work and looked at my joints.  He was quickly able to put the pieces together with my history and diagnose me (wish I had been sent to him ages ago) I have Ehlers-Danlos Syndrome Hyper Mobility Type.  Everything fits together.

 

So I will be going to physical therapy to see what I can do to help strengthen my body.  I will also be getting a referral for X-rays and an MRI for my ankle and possibly knee as they are the most effected of my joints right now.  I may look into chiropractic or massage for my back, neck, and shoulders.  I probably need a brace for my ankle.  I also have some medication to take for when my joints are bad.  Hopefully Yarrow will grow big and strong with the correct temperament to help me when I need her.  I will be needing her.

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