PsA (+ added illnesses) and The Loss of All I Held Dear

I've been "in some type/area/level of" pain, every second of every day, since 2010. After YEARS, I was, FINALLY, diagnosed with psoriatic arthritis in 2013. My husband and adult daughter had labeled me a "hypochondriac" by that time. BTW, THAT LABEL "STUCK."

Additional tests and diagnoses

My rheumatologist ALSO diagnosed "mixed connective tissue disease," undifferentiated muscular-skeletal pain, had referred me to a neurologist, who diagnosed me with "chronic migraines, carpal tunnel, radiculopathy, and dysautonomia (he stuck pins in my arms and "shocked me." I think it was an EMG test). After an MRI on my cervical spine and lumbar spine, he found discs, fused together by stenosis (in both areas), 2 discs in the lumbar spine were bulging (after an incident at work, which occurred because I wasn't shown how to lift!!) with canal stenosis, facet arthrosis, and foraminal stenosis!

If I'm honest, I don't know what much of it means, except, that I have nerves being compressed, and it's agony to walk. The facet arthrosis, also, caused "sciatica," on both legs, at separate times. Those 2 MRIs were done in 2015!! I ALSO have "lesions" on my spine, caused by "inflammatory arthritis." My rheumatologist, at the time, referred me to the HEAD PROFESSOR at Baylor College of Medicine, for a 2nd opinion?! She agreed with my former rheumatologist. My MAIN diagnosis was psoriatic arthritis. As well as that, I have bipolar disorder type 2, degenerative joint disease, degenerative disc disease, mixed connective tissue disease, fibromyalgia, osteoarthritis, diverticulitis, and irritable bowel disease.

The tipping point

On 12/5/2015, MY LIFE CHANGED FOREVER. I had been struggling with "breathing" for 2 or 3 months, BUT, it had started to interfere with my day-to-day life. My husband was in the UK, and had "surprised" me with a weekend in New York (a late birthday gift) and, something I'd always wanted to see, the big stores, windows decorated for Christmas, and, to go to the various Christmas markets!! I was SO excited. We were going to fly into different airports, SO, ALL I HAD TO DO, WAS TAKE THE SUBWAY, a few stops, and, after a short walk, meet him at the hotel. SIMPLE??? NO.

The day before, I'd finished work at 3 pm. I got into the car, to make the 12 min drive home (to my 12 and 18-year-old) and realized that I wasn't in a fit state to drive. I messaged them, both, saying I'd be an hour late!! I curled up on the back seat with a blanket (we always carry 1) and set my phone alarm for 4 pm!! I slept STRAIGHT THROUGH the alarm. In fact, I ONLY woke up, because a colleague, parked beside me, knocked on the window. It was PITCH DARK AND 7 PM!!! When I got home, my 12-year-old had arranged a sleepover (and was only waiting for approval). I crawled into bed, for a NAP, I was working at 7 am the next day!! I woke up at 5:45 am, still in my uniform.

An unexpected hospital stay

At 10:30 am (3 1/2 hours after I clocked in) I asked to leave and drove to the ER. Within 20 mins, I'd had x rays and a CT scan. I had a double pulmonary embolism (with too many blood clots to count). My blood work "wasn't right," so I was sent for a "detailed" SCAN. It was found that my entire abdomen was "infected." There were stones blocking the entrance to my gallbladder, and filling it. I had sepsis, which was less than a day away from becoming septicemia!!

The Head of Infectious Diseases took over some of my care. She had 4 different antibiotics on different IVs. I was receiving clotting injections, with IVs dripping who knows what into my other arm BEAR IN MIND THAT I WAS ON DILAUDID, EVERY 4 HOURS, STRAIGHT INTO THE IV IN MY ARM.

When I asked if I'd be out in time for my vacation, there was much "laughter" in the room before my consultant told me "no, and if you HAD gone on that flight, as soon as the plane reached 33,000 feet, the cabin pressure would have "blown" a clot, into an artery in my heart or brain, and I'd have died before I knew a thing (THIS SOUNDS AWFUL, but I've often, thought back, and wished I'd never gone to the hospital that day). I know that sounds awful. Obviously, I recovered from the major "stuff." I left the hospital on 1/2/2016.

Psoriatic arthritis ruined my family

The pain I, and others, face, every day, from PsA, and associated illnesses is HORRIFIC, UNBEARABLE, SOUL DESTROYING, NEVER-ENDING, CONSTANT, CHRONIC, INDESCRIBABLE and it has ripped my family to shreds!! My children are no longer " close" to me. For YEARS they've been afraid to hug me (in case they HURT ME). My husband was "the great love of my life." He was the partner that people spend their lives looking for, and, that few find. He was my prince charming. He stepped into the role of "father" to my 2 children, 7 and 5, and, over time, with no pushing, at their pace, at their request, became "dad." He has loved them as though they are his own, biological children. He's gone above and beyond the role of any father. He WAS the best husband I could EVER have married.

Pain's effect on my marriage

Now, my marriage lies decimated, on the ground. Trampled into nothingness, by the way, I have dealt with this illness, and, all that comes with it. HE is trying to finalize a divorce settlement, so that he can start afresh, begin a new life, with a new partner. He wants someone who can go out to dinner, even lunch, go for a walk around the lake, watch tv. Someone to have a conversation with, which isn't about PsA and pain!!! Someone to cook with, be intimate with. Someone he's not afraid to touch in case they break.

I don't blame him. Not in any way. I have approached this and handled it so badly. Our relationship, started, the kids and I moved in (50 miles from home), we got married and I was pregnant, all within 14 months. I didn't hesitate to do ANY of it. I loved him with all of my heart. My last marriage had ended "so violently that I vowed NEVER to marry again."

After our 1st date, I knew!!! After he proposed to me (he asked my dad for my hand in marriage. I was 33, DIVORCED, WITH 2 CHILDREN) he made me a solemn promise that he would NEVER leave me. No matter what, we would work it out, together. I ALWAYS thought he would stick by that promise, and me!! He broke that promise, and, I, honestly, can put my hand on my heart, and say that I can't blame him. Who knows what he or any of my children (grown-up) would have done if they were in my position, and, suffering every minute, the pain which I feel??

Do not hide all the pain in

I tried, BUT not hard enough. This disease, and its "related" ones, have "broken" me, so badly, and cut, so deeply, that I never want to have another partner. Where do you look, when you had "the best"? I don't exactly know the point of this "story." Perhaps I just needed to write it down. Tell others to try a different way. Being angry about it, and the impact it made on your life is pointless. If I had "LET MY HUSBAND IN!!!!" maybe we would have been stronger, together? Maybe he wouldn't be DYING to get away from me, he says, "not because of my illnesses, but, because of the person they turned me into." I'm so, very sad.

Share your struggles

If you value the love of your partner, share your struggles. Ask, nicely, for their help. When your pain is at its worst, and you are at your lowest ebb, hold on to the person you love most, the one you promised to love and cherish. As people, we can only suffer so much. We are not mindreaders. We can't "guess" what or how bad the pain is. Others can't POSSIBLY KNOW that this pain, feels like someone is ACTUALLY RIPPING YOU APART. They can't know that!! We HAVE TO HOLD ON, as though our lives depend on it. Even if it hurts, dreadfully, hold on, and NEVER let go.

Loneliness, another symptom of psoriatic arthritis

I let go. I didn't reach back out. I chose to go it alone. I'm so sad, and I think this must be what dying feels like. I'm dead inside, and as well as continuing to fight the PsA, my heart lays shattered, broken. It can't be put together. I have to try to make some type of life, for myself, by myself.

BEING LEFT ALONE, IS JUST ONE OTHER EFFECT OF psoriatic arthritis!! (Don't let it win.)