Words from Doctors a Patient NEVER Wants to Hear…

The past couple of months have been filled with words I never really dealt with before…words and numbers on paper that PROVE something.  Up until now, my life, and diagnoses have been consumed by words like, “probably, sounds like, seems to be, could, clinically…”, with the one exception of my spinal fractures. This has left me in a tail spin.  I was able to deal with previous diagnoses of “asthma, autonomic dysfunction, Systemic Lupus, and even Mast Cell Activation Disease”, because I KNEW what I was dealing with before I even Read More »

Reflection and Excitement

Last year at this time, I just turned 35 years old, and was miserable.  I really did not think I was going to even live to SEE my 36th birthday.  My family and I had no idea why my body was rebelling so frequently or violently.  The doctors were at a loss…only knowing that SOMETHING was happening that was neurologic/autoimmune/allergic. My rheumatologist agreed to start me on the mast cell disease protocol of gastrochrom liquid, zantac, and Zyrtec.  To all of our surprise, things started to improve slightly, but not enough…things were Read More »

Spoonie Goal – Never Apologize, Never Explain 1

  Living with multiple chronic illnesses, I have gotten into a BAD habit of both apologizing for, and trying to explain why my illnesses are REAL and not “in my head”.  This was pointed out to me today, once again, after I asked a question in a support group about how to use Reiki techniques to clear yet another sinus/upper respiratory infection. I made it quite clear that due to my chronic illnesses, that I could not ingest anything (other then the antibiotics that I am already taking), or use scented Read More »


I’ve spent a long time trying to figure out how to put into words what this word means to someone with a chronic illness…or even to a caregiver… Freedom can mean anything from taking some time alone to just breath, to checking items off a bucket list, to accepting the emotions we ALL go through. We can all take a few moments to just breath…a few deep breaths before starting our day can do wonders to set the tone for the day.  It also gives us an opportunity for mental Read More »

Inner Strength and Courage Through Pain and Anxiety

Just for today…I  will live with courage and passion.  This was to be added to my daily mantras this week.  I had no idea how much I would need this mantra until this morning. Last week, I had a few bouts of anaphylaxis due to an inactive ingredient in a medication.  This caused my body to go into tonic spasms and my body to twist into very unnatural positions.  With osteoporosis, lupus, and mast cell disease, my bones can fracture easily, bones can fracture with bending, twisting, lifting, reaching…so during this spasm, four of the Read More »