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 received the diagnosis.  There was also a part of me that knew I wasn't alone in the battle.  I had either met other people who were living with the diseases, had family members dealing with symptoms well, or had done my research well.  Also, test results aren't exactly reliable...so there was always that question as to whether the diagnosis is REAL, although I clinically have the symptoms.  So on "feel good" days, I can kind of pretend I am alright (although I still avoid triggers and take my medications, do my meditations, and get regular sleep to keep myself feeling as well as possible for as long as possible!).

Last month, I was in excruciating pain in the middle of my back, and it was found to be yet another fracture in my thoracic spine.  Nothing to do for it, but wait for it heal, at this point.  I was given a "turtle shell" back brace to keep my spine stable.  The pressure of the brace on my skin set off a chain reaction that led to a massive flare-up.  It started just on my skin...it looked and felt like shingles, but was obviously a "mast cell rash" that turned into full-fledged systemic inflammatory reaction.  The inflammation then set off the, now monthly, sinus infection...

For the first time in a year I had to raise my prednisone dose from my "normal" 30 mg daily dose to 40 mg in order to breath after being in a "stridor" (throat spasm), for five hours.  I used every medication in my arsenal before upping my prednisone.  Thankfully, the 10 mg jump eased the inflammation just enough to get my throat to open for me to breath until I could start the antibiotics the next day.  After a full week of antibiotics and upped prednisone, I finally lowered my dose of prednisone back down to 30 mg yesterday.  I will be on antibiotics for another full course...

That is not the scary part for me (although it may seem that way to many of you reading this)...the scariest part came from the phone call I received from my doctor yesterday.  He ran some blood work to see why I keep getting these "infections" every month (or that they never actually leave me...).  His first words to me were: "Well these results are...interesting...", his second sentence was, "You have a hematologist, right?".  Now there are two sentences you do NOT want to hear from your rheumatologist! 

As I have been off of immune suppressant (chemotherapy) medications for one year, he feels that they SHOULD be out of system by now, although that is when these infections that just won't leave, started.  He explained that the results do explain that, yes, I am immune suppressed, and why I keep getting sick...but he doesn't know WHY. 

Of course I did what any "spoonie" does with results...I played Dr. Google for the rest of the afternoon after making my appointment with the hematologist (who is not available for two weeks...). There are some intimidating words that go along with my numbers.  Mostly, I know I have many more vials of blood to be drawn for a firm diagnosis...and definitely other treatments to explore after those results come back. 

The main emotions I am feeling right now is: UNCERTAINTY...FEAR...FRUSTATION...CONFUSION...

While I am using my strategies of distraction, meditation, and reiki to help me cope, I know that many of you can understand my feelings...yet another diagnosis...yet another set of treatments...yet another set of doctor appointments...more questions that just breed can breed more questions then answers, it seems.  Knowing is better then "hmm...interesting...see this other doctor for more tests...". So for now, I wait...and try to do the best I can with the strategies I have to just COPE with the emotional roller-coaster.   

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 still going downhill and with different symptoms, including a strange rash on my neck that we had only seen during an allergic reaction to medications, only I was not on anything new (or was I)?

I was sent by my pulmonologist to Shands hospital in Gainesville, FL, along with 50 pages of my medical records.  The pulmonology fellow walked in the room, asked me a few questions and said, "I know what is wrong with you...".  In that moment, my whole year changed for the better.  Slowly but surely, having a new diagnosis of Mast Cell Activation Disease along with SLE (probably secondary to the MCAD), put everything into perspective. 

My family and I were able to figure out triggers more easily, and they actually made sense as to why I was experiencing such violent anaphylaxis from seemingly innocent items (touching a banana, alcohol wipe or perfume, glue of any type, and MANY inactive ingredients in medications).  With this knowledge, I am able to avoid so many attacks, and when I DO have an attack from something I cannot avoid, I am able to take medication soon enough to prevent having to raise prednisone...this is a huge breakthrough!

The biggest, and most positive change, is that I found my true calling in life and have been able to finally break free from the bindings that were holding me in place.  I am no longer living in "survival mode".  I am doing what I love...learning and healing and helping as many people and their pets as I am able.

I am continuing to expand my knowledge, experiences, and healings as I help people through Reiki, Guided meditations, art therapy options, and I am so excited that I can now also help other's find their true calling, as I am a certified Life Coach. 

I have also met some incredible friends who share the same passion for healing...age 36 is looking like it will be one exciting year! 

Spoonie Goal - Never Apologize, Never Explain

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 anything...and I hoped beyond hope that not only would I be respected enough for the people in the group to respond with only Reiki (or other energy techniques).  Some did...but other people questioned whether I was "emotionally blocked" and that was the reason for my illnesses...sigh...

This is where I should have let it go...not responded...but I did.  I tried to explain that my immune system is compromised due to multiple autoimmune diseases and histamine release (mast cell disease) issues, that are causing the problem, and that autoimmune diseases run in my family.  This led to even more posts about past hurts and emotions. This is where I DID stop responding.  Once was enough. 

I told my Mom what I wrote and she asked why I felt the need to keep defending myself to everyone.  The truth is, over the past 16 years, I have gotten used to apologizing..."so sorry I have to cancel AGAIN because I am too sick/fatigued/in the hospital to attend".  I have become even more used to defending myself...I defend my illness to new doctors, in support groups, to friends, teachers...etc.

I think many "spoonies" can relate to this...and we need to stop!  The people who matter the most will ALWAYS understand and love us!  When we say that we are sick/not feeling well/are in pain, they will ask how they can help, lend an ear or offer words of comfort...not judgment.  

So this is not only my goal, but my new mantra for this week as I cope with yet another sinus infection... accept my situation and love those who accept me for ME!

Freedom

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 freedom....to use that quiet space and time to clear the chatter and worry that can build up before it explodes. 

Checking items off a list is a definite type of freedom, if healthy enough to travel (or even doing local things and making them "stay-cations if unable to leave the area).  The important thing is to do things that will gives joy and a sense of physical freedom.  This is super important when a person feels cooped up in the house and gets "cabin fever".  This can lead to depression, anxiety, and further stress. 

Freedom of expressing ourselves...speaking our minds...saying how we REALLY feel...this is probably the biggest challenge for "spoonies" and caregivers.  We do not want to feel like a burden, so when asked "How are you feeling?" The response is often "Fine", "Hanging in there", "Okay,"...This can create a huge wall between friends, family, and those who need the most care and love. 

As someone living with chronic illness and incredible caregivers, I know how important it is to feel truly free to speak up...to not have to be strong all the time.  It is an impossible task!  Freedom to say, "today is not a good day...I really need some extra help."...and not feel guilt...

Most days I feel like Athena...a strong warrior, ready for battle! 

 

And other days, I feel like...

Her Diamonds by Rob Thomas

 

Either way...there is a freedom in expressing how I feel without shame or guilt. 

I am Free to be who I am...NO MATTER WHAT! 

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 ribs on my right side fractured. 

 

In the upcoming days, I did quite a bit of meditation, Reiki (both self-treatment and an in person session), and the pain subsided quite a bit.  I thought I was healing, and at this time, I was unaware that the bones were fractured...I thought the muscles were just pulled or the ribs "slipped" out of place, and this is why the pain was easing so quickly. 

 

Two days ago I turned over in my sleep, onto my right side and was jolted awake with a sharp "POP POP POP"...the pain was...intense.  I thought I did the same thing again, just reinjured the same area by twisting in my sleep.  I did more Reiki, used ice (as swelling in that area was increasing), and tried to stay as still as possible.  

 

This morning, however, the pain was just too much for me to handle, and I had to know if it was coming from my spine or my ribs (since it radiates from my back to front).  My Mom and I had to take a picture of the sign in the Emergency Room, of their "goals", as we found it both amusing and sad... 

The first goal on the list was to have a "quick discharge", then safety, pain management is at the bottom of the list and patient care is no where to be found.  We were in the ER for three hours to find out I had fractured ribs that cannot be treated.  Although I was offered pain medication, I cannot take them due to allergic reactions...so I was sent home with the instructions to rest and restrict movement for about six weeks as the bones heal. 

 

As many of us with chronic illness, it took quite a bit of courage to GO to the ER in the first place. I have had many horrific experiences there in the past.  I have had to let them go...but for when they come back and cause anxiety, I do a grounding  technique...

 

I close my eyes, take a breath, and then open my eyes and focus on one thing in front of me and say to myself, "I am safe, I am breathing, nothing bad is going to happen to me.".  I keep repeating this until the old memories get pushed to the back of my mind, where I visualize a filing cabinet.  I then lock those memories in that cabinet, as they are no longer needed.  By this time, the anxiety has passed. 

 

For the next few weeks, I will be doing quite a bit of visualizations, Reiki, and meditations...My inner strength WILL get me through this pain!  

 



Just for Today....

When I first did a "positive affirmation", I was just a teenager.  My grandfather, Papa, saw that I was sick and tired of being sick and tired!  I was dealing with stomach problems, asthma, knee problems...but nothing seemed related to anything else, and certain doctors attributed my symptoms to just having "growing pains".  I, however, had enough of hobbling on crutches, coughing at the mere smell of a cigarette or certain type of perfume, and not being able to eat my favorite foods anymore (mmm...eggplant rollatini).  So one day, he stood me in front of a mirror, and made me repeat "Every day, in every way, I'm getting better and better."  He made me say this over and over until I was saying it as if I truly believed I would get better every day. 

Each time I would see him, and not feel well, he would make me repeat those words...over and over again.  Like poetry, if you just memorize the words without feeling the meaning behind them, they will not have power...you will not be able to feel their beauty and they will never enact change. 

The same theory applies for the affirmations (or mantras, as I will now refer to them).  If you believe what you are saying, then the words have power.  Just as we so easily hold onto negative beliefs about ourselves, we can change those thought patterns into something positive, even if it is "Just for today...". 

I find that it takes about three to four minutes before I get out of bed in the morning to say my mantras and start my day on the right footing.  I feel more at peace, balanced, relaxed, and able to breath a little easier.

My Mantras

~Just for today I will not worry. (repeat 3-4 times with my fingertips touching, like an open pyramid shape, near my forehead)
~Just for today I will not fear. (repeat 3-4 times with my fingertips touching in the open pyramid shape, just between my eyes)
~Just for today I will do my work honestly. (repeat 3-4 times with my fingertips touching in the open pyramid shape, by my throat)
~Just for today I will love myself. (repeat 3-4 times with my hands forming the shape of a pyramid over my heart)

My challenge to you...try the mantras each morning for one week and see how you feel...do not just mimic words, though.  Breath them in...feel the meaning behind them, even if it is "just for today". 
I hope you feel as much benefit from them as I have...this is one easy way to feel peace and balance in our daily lives. 

Here is the Youtube video showing how I do the mantras...I hope you check it out and join me for the week in continuing to Bridge the Gap to Heal using "Just for Today..."

Just for Today...

 

'Bird Set Free'

When I first heard this song, it was on American Idol, and I just had to hear it performed by Sia.  The lyrics made such an impact. As someone living with a chronic illness and pain who has just found her passion in life...I feel as if I  am that bird being set free.  This blog, the webinars, Facebook page, Reiki and guided meditations that I offer are my way of "singing for love...and for me".  Before this avenue presented itself, I DID feel trapped in a cage my body seemed to create, keeping me down, unable to find my voice...but I didn't want to die or give up. Now I am SHOUTING my message to the world...Bridge the Gap to Heal - Body, Mind, Spirit...use whatever method you need to find YOUR way to be emotionally free!