The Precipice

A year ago I was anxiously waiting on the closing of my new home. My children were all out of the nest and it was time to make it smaller and more manageable for me as a single mid-40's woman. I was beyond excited to find the perfect home for me, and my dogs.  The backyard is a yard that most people can't imagine finding within the city limits of Bangor; and it's a yard that most dogs dream about in their sleep.

This is my dogs' dream yard, a triple city lot, all fenced in. We are in love with it!

But the most important part for me was it was all on one level and even has strategically placed bars on the walls in certain places to assist an elderly person if they needed it at the one stair in the house, or in the bathroom.

The  handrail is there for when I need it!

My real estate agent said I could remove them; but inside I knew that I couldn't.  My balance had started to become a progressive issue that I've hid from most well; and I was relieved that I wouldn't have to find a handy man to come back to reinstall them when I needed them in the future.  Another favorite part of my house was my garage- yes, a garage in Maine. I'd lived in a beautiful cape for 20 years without a garage and I knew it was going to be heavenly to not have to clean my car off from snow and ice, in the wind, a zillion times a winter. My home needed some updating and I was able make a very sweet deal that would leave me safe from worry of not losing my home when it came time to stop working. Big huge home proceeds minus cost of much smaller home that needs some work equals a safety net. Little did I realize how soon I would be grateful that I had made that move.

Home sweet empty nest home.

The stress of selling, buying, closing and moving into a new home that needs renovations done cannot even be quantified. Add to that the stress of losing one job; and being recruited for a newly created position that was created just for the set of skills you have cultivated over all of the years of working, right in the middle of selling said large house -I was a mess. I had the support of my new boss as he owns a real estate company; and I was very fortunate for that. However, physically I would describe it as I was about to spontaneously com-bust. My middle son (age 22) had invited my youngest son (age 20) to come move down to Maryland with him when he moved off base from Fort Mead. My oldest son (age 24) was working 6 days a week and had a new girlfriend (whom I adore)- so they were otherwise occupied, which they should have been, as they had already left the nest. My extended family is very limited so without the help of a couple of very dear friends, I'm not sure how I would have made it through this. The feeling of just blowing up on the spot was very strong....but I was putting up a good front, I think.

My youngest, Logan on the left, and oldest, John, on the right, the night before Logan moved to Maryland to live with his brother Cameron. 

A very proud day, in July of 2013 when Cameron enlisted in the Navy. He'd been home 4 times since and is now living in Maryland and utilizing his GI Bill for school. 

It was during this time that one of my fingers started to swell up like a sausage. I wasn't sure what was going on. I'd been told for years that I had osteoarthritis in that finger and that once the damage was complete it would stop hurting. Take some Aleve if  needed. Said finger was my ring finger on my right hand, and I was right handed. No problem until typing, writing, and shaking tons of hands became the source of my income and my stress level seemed to cause my finger to swell up worse.  It hurt like HELL. It looked like HELL. and I felt like HELL. All I wanted to do was sleep. And not have to write anything, or shake anyone's hand....

This was when I started to realize something was wrong, just over a year ago in the fall of 2015

Now, since my early 30's, I've suffered from Fibromyalgia. What is fibromyalgia, really? (from here on out I will refer to as Fibro), in layman's terms fibro is a bank of energy that gives you insane pain when you either use too much energy and overdraw your "energy account" and end up in extreme amounts of pain, or, you use some of your energy too fast and feel GREAT, until you stop, and you can't think, function, and it becomes very hard to control your pain. There's a "Spoon Theory" that a dear friend shared with me that explains VERY well what those of us live through with chronic pain conditions, and she gave me this beautiful Spoon bracelet as a reminder. If you have a friend with Fibro, RA, PsA, Lupus, MS, or any other disease that you don't quite understand, read the Spoon Theory and it will help you gain perspective (and your friend will thank you for understanding).

Fibro has some "stigma" because some medical providers don't understand it and many people don't understand it, so, I suffered as quietly as I could. My close friends and former bosses knew, and I have a great group of doctors who are supportive and helpful with managing the symptoms. My fibro, I thought, was getting worse. Stress can cause that to happen. Along with the big downsize, an uncle who had been going downhill for years (after 40 years of being a quadriplegic, that happens) and had gone into the hospital for the last time, passing away on Thanksgiving Day. There was extended family arriving, needing a place to stay, a "homestead" filled with far too much stuff that had to be dealt with upon my Uncle's death.

My extended family after my Uncle's funeral. All but two people (and myself) in this photo live out of state now. The cousins hadn't all been together in decades!

Then I got to deal with the Holidays itself with two of my kids living very far away. On top of everything, my new boss was ready to see my 100% that I wasn't able to give through the move, then through the funeral and family commitments. Ok, I'd made it to New Years....and then the colds and flu season was upon us. And it hit me hard.

Everyone in my office was sick, including my 79 year old boss. Everyone was sick for a couple of days, maybe slept in one day, they took the zinc, they took the Emergen-C, they drank their tea and were able to work. Me? My cough got worse and worse no matter what I did. I tried to work and ended up going home early every day because I felt like shit. I felt even worse when I saw the look on my boss' face when I told him I needed to leave and heard the sighs of the other women in the office as well. And my finger? Well, that was getting worse too, and other fingers were starting to swell up. Thankfully nobody wanted to shake my hand because I was sick. At least that was a bonus.

 When I saw my primary care provider in January I told him I needed to see a new Rheumatologist (A specialist in all of the auto immune diseases). The one I had just recently started a relationship with had told me that if my "mother was alive (she died when I was very young), she too would have had osteoarthritis" when I had seen him in October. My finger was getting worse and worse and thankfully the x rays that my primary care provider sent me to caught the fast attention of the best rhuematologist in town. She saw me the very next day after my hand x-rays were done. I was so fortunate.

My left hand was starting to swell and show joint damage.

The picture doesn't even quantify the pain after working a 40 hour week.

 (From now on to be referred to as my rheum, or Dr. Asha). The erosions in my finger were termed severe by the radiologist; and many other joints had progressive damage as well. Dr. Asha started using terms such as Psoriatic Arthritis and Sero Negative Spondyloaropathy and Ankylosing Spyndilitis- diagnosis' I knew nothing about. What I did know was fibro and it was clear to me that she understood the continuum of pain that someone deals with when suffering from it. Some days are good, some days are bad, and some days are very bad. We discussed my back surgery from 1982 that fixed a severe case of scoliosis, to the best of my orthopedic surgeon's ability. I had a 54 degree angle between my shoulder blades that was causing a twist in my ribs so bad that it was crushing my heart and lungs into places that they shouldn't be in. I had a 5 hour surgery (in which they woke me up every 20 mins to move my toes to make sure they hadn't done anything too traumatic to my spine) and ended with a 12" rod that was fused between my ribs and spine. I was on a stryker frame in the pediatric ICU for a week.

A stryker frame is a bed that you are rotated on from your back to your stomach every few hours to prevent any damage to the spine that is healing. My first memory of a stryker frame was from the movie "The Other Side of the Mountain" about the young woman who broke her back skiing. I'm glad I saw the movie prior to my surgery! It actually helped.

I was then a body cast for 3 months and a brace for 3 months. I was in the 8th grade and I DID NOT CARE what other people thought of me or if they were teasing me because the pain was so severe prior to my surgery, I was just thrilled to be out of that pain. And oh yeah, they measured me the night before my surgery and then the first day I was on my feet a week later, and I grew 3 1/4" in that 5 hour surgery.

No sparing the rod here.

This cast weighed over 50 lbs and I had to be rolled onto a counter to have my hair washed, for three months. I even happily sang in the 8th grade Christmas Concert, body cast and all.

Dr. Asha reminded me that even though that surgery was planned, it was still a severe trauma to my back. Severe trauma is one of the known causes of Fibro- physical trauma and emotional trauma. Unfortunately, I had had both. Fortunately for you, the emotional trauma will be another post. When I had a list of blood work ordered (that would take up 12 vials) Dr. Asha asked if she could see my back scar, it's quite impressive to all doctors who see it. A med student was observing and I told him to come on over to see it too, he looked and said "Oh WOW!" to which Dr. Asha kindly said "we don't say Oh WOW in medicine" I laughed....and I knew I had finally found my advocate.

THEN, on February 8, 2016, there was a sudden death in the family when my sister's 57 year old husband suffered a major heart attack. Was it a very bad version of ground hog day? More phone calls and arranging the arrival of family from out of state and where they would be staying. A death that you know is coming has plans in place for when the time comes; but when there is a sudden death in the family it takes it's toll.  For me, the stress level brought the cold I had been fighting off since January back with a vengeance. I was also now on an immuno suppressant to try to slow down the damage to my fingers. The cold went into my chest and I could not stop coughing. But I continued through the funeral and then crashed and crashed hard. I ended up with bronchitis and was out of work for another week, on my back, on my couch, or in my bed. Friends brought juice and ginger ale by, picked up meds for me, and I made it through; but things were different when I went back to work. Frustration on the part of my boss and the other full time employees was palpable. Adding more stress....

Mike's Harley at his visiting hours, on a cold February night in Maine. RIP Mike.

It was suddenly becoming very clear to me that managing my auto immune diseases (of which I at that point was diagnosed with four) as well as the chronic pain resulting from my back surgery (the weather temp drops and barometric pressure changes give me breath stopping pain), were truly preventing me from being able to be the employee that I wanted to be. It was a very tough month in March as I was realizing this was indeed happening. I was damn good at what I did; but I couldn't do it if I was always sick. And the more stress that was added to my plate, the more sick I became. And the fingers, well, the pain was becoming unbearable. Shaking a new business associate's hand, or a recruit's hand, or writing of any kind, was bringing tears to my eyes. Most didn't understand. I'd have questions at work asking me "how my fingers were doing" and I wanted to scream. I wanted to tell them that it was just the tip of the "iceberg" of health issues I was dealing with; but I had hidden them so well, from most, for such a long time. Including myself. The first week in April of 2016 I resigned my position and applied for Social Security Disability. It was like a death. It was the end of the go-getter me out there moving and shaking, making contacts, sealing deals, managing a large business' social media, training agents that needed assistance with all of those online tools.

Networking at a Chamber Awards banquet with one of my BFF's, the night that would turn out to be the last time my Uncle was rushed to the hospital before passing away on Thanksgiving Day 2015.  That event was when I reached the precipice, I think, of how much stress my body could handle. Everything seemed to start to go downhill very fast, from this point forward.

Getting done work was one of the saddest times in my life. I did not think things would change that fast. It left many people wondering what was up and it has honestly been something too hard to talk about with everyone until I wrapped my head around it myself.

Well, whether I like it or not, my head is finally wrapped around it, I've transitioned to being "retired" and many are asking me what is going on. I am a writer at heart and am going to put it all "out there" for those who care, in this blog. Some of it will be tough to read, and I am not at all asking for pity. I want to use this blog as an educational tool that hopefully will help others in the same situation. Some people were dealt a very tough hand and have played it the best they could. However, that hand they were dealt does correlate with auto immune disease. I also want to help friends and family of those who suffer from auto immune diseases to be able to better understand what they are going through. It's very hard to support what you don't understand.  If this blog brings some understanding and support to someone who has none, then I will deem this a success. Thank you for reading this, and by doing so, expressing that you want to understand and support.

Gentle hugs,

Dawn