Chronic Abnormal

IMG_6506What you see on the outside
Is not necessarily what is going on the inside
My spirit is strong but my body is weak
I live in between the land of the living
And the land of the dead.
I am full of hope and little of dread
I have good days and not so good days
I look normal, with a smile on my face
Look closer, you will see the pain in my eyes
With the smile creases as my disguise
Yes, I am dressed with style
Look closer what do you see?
A big sun hat, and a loose dress
and a big basket, filled with things for “just in-case”
I slowly move so I don’t wince,
I handle my symptoms with grace
So the pain will not show on my face.
Every movement is at a very slow pace
As people plan their day, weeks or months
I go moment by moment
Sometimes second by second
I live among my pillows, electric blankets close by.
I laugh hard when all I want is to cry.
You may ask why I try to hide
And I will tell you
Sometimes I want to feel normal instead
Of living in between the land of the living and the land of the dead.


written by Niki Wilke



Around the table with l❤️ve


This year our thanksgiving was a week early. Which was nice. My oldest cooked along side her dad. I was able to rest and enjoy the event instead of having to go to bed because I got too tired. The room was filled with good smells and everyone was together.  All were present around the table this year. It is a memory I will treasure.

It brought me back to my fondest memories around grandma’s table. This was the focal point to most holidays in her house. If you cook they will come, was her style. There was always plenty of food and all were welcome. I wish I could go back in time to enjoy the food that was served at that table. You knew what love was if you tasted her meats, salads, biscuits with butter, deserts and always room for jello meals.

All had a job if you sat around that table to eat. If you were old enough you did cooking prep. Or brought something  from your kitchen to be served. The youngest male took the trash out. The older men kept grandpa from getting under foot while she cooked. The younger girls did clean up. When the tasks were done and the meal was put away, the table became the game room. Many card games, monopoly, and marble games were played around her table. The laughter and conversations that filled that room, I miss. Plus, it was those who sat around the table who made the holidays special. Grandpa who was grumpy, Grandma who was the glue to the family, and cemented everyone together. You just knew you were loved. Then there was my dad with his many fishing stories, my mom was the rule maker of tradition, Aunt Bonnie who you just knew loved you, and uncle Ed who always had a story or antidote to tell. Then there was my Aunt Connie, who was an aunt but closer to my cousins age than her sisters, and my many cousins. As we grew older, so did the people around the table. Spouses, cousins, and grandkids shared in the big events.

Today as I remember that time, I am reminded that we need to reach out to those around us. Yes, holidays can be stressful with family and friends, but if you do it with love they are memories that will last a life time.



You are going to miss the sun rise.


This morning, I woke very early. I heard “Nik come on you are going to miss the sun rise, Time to get up!” As I woke and looked at the clock, it said 5:55. I rolled over trying to go back to sleep.  “Nik, you are going to miss the sun rise, get this adventure started.” Echoed again in my thoughts. At 6:16 I rolled out of bed to a dark house, those words still echoing in my head, I got dressed grabbed the dog and went looking for the sun rise.

Where does one find the sun rise in Washington state I wondered? I looked to the right and left then I steered the car towards Squamish and setting out to find the sun rise. This is my favorite time of day, the air is cool the light is just starting to show its self. As I turned off towards Squamish I wondered if it was clear enough to see the sun let alone see it rise.

As I got closer I remembered when I was little, my dad would wake me up way before the sun rose and we would set off on an adventure to the unknown, a day filled with wonder and laughter. I get my love for nature from him. We always ended up in the most beautiful places in Idaho. ” Nik do you want an adventure?” he would say. “Focus or you will miss this moment! “ As I got closer to the pier in Squamish, I looked out satisfied with the view. I made it to the sun rise or so I thought…

It was breath taking, I got out of the car and thought I will snap a few pictures, then walk the dog and go back home. Little did I know there was another plan…. I got the dog out of the car and started to walk her. I had my cane in case I became weak, my sun hat as the uvrays awoke with the sun and my slippers to keep my feet warm. The sky had changed, I stopped the dog, put my cane next to the railing on the pier and snapped another picture.



As I turned to take this photo I heard a splash! I looked to see my cane floating in the water below. If you live in the north west you don’t go in the water unless you are in a diving suit. In that moment I was in shock, there was my favorite cane floating below me. Do I let it go or do I try to get it back? I looked for a place to get to the shore below, it was not easy walking without my cane, in my slipper and with the dog in tow. As I lifted the dog over the cement block and steadied myself to the rocky sand. I went towards the pier hoping my cane was still there. I had to wade out two feet in the Icy cold water barefoot on the rocky shore.  I had a good laugh, “Niki you are nuts for doing this!” But something awoke inside me, I was in the middle of an adventure. In that moment I shifted from survival to living in the moment. The Sun was between the mountain and clouds.


The sky had woken…



The dog started to pull on her leash as I looked down towards her, she was happy trying to catch the wave as it came to shore. She jumped towards each wave. But looking out to the next one ready to try and catch it.  We both were in the moment, enjoying our surroundings, I laughed and smiled taking it all in. It was nice just being free from thoughts of my illness for a while.


As I started to feel the pain and stiffness, I decided to make my way up to the car where I had blankets and car heater. I looked out and had to smile in the 20 minutes I had been there, the sun had woke up and changed the colors in the sky. I would have been happy with the first picture. In life we can become rushed and focused on our needs to the point we miss the moments to take us outside ourselves. As I got into the car where there was warmth… I came back to the words that woke me up. “Nik wake up or you will miss…”  Today I challenge you to find a small adventure that takes you out of yourself…  always Niki❤️

Finding your way after you are Diagnosed

imageIt is real easy to become disconnected, with yourself and others after the symptoms and diagnoses come. For a while I pushed everything away. It hurt to notice who I once was. I grieved for my old self. I had a funereal inside for the person I once was. I just wished I could disappear. I felt I had became a burden to my family and friends. Loneliness set in. No one understood me. They didn’t know how to act around me or what to say to me.

The Diagnoses

You are sitting in the doctors office as he or she has a pained smile, “The tests came back, you have —–. They talk fast, giving you things that you need to know. What you should avoid. What  you should look for with new Meds. As you walk out you are changed forever, your old self gone. As you walked into the office, You were fighting for your old self… Thoughts bouncing through your mind. “When I get the answers I can go back to work.” “When I take the Meds I will get back to my old self.” But when the Doctor gives you the answers you have been searching for. You realize you have entered a chronic condition. Some days will be good while others will suck your breathe away. I went into the doctors office with hope and left with myself shaken and rattle, the day they found my true diagnoses after 45 years. My identity changed forever. Questions of “Now what?” Those first few years had been of depression, fatigue, loniness, finding what comforts me and what makes me flare. Sleepless nights with endless pain and brain fog. My hope shaken and thoughts of “Is this it?” Then these last few years have been rebuilding myself. I have found new things I like and things I use to love some have faded away. While other things I found new ways to enjoy with in my bodies limits. Nothing has changed, I still have to be careful. Take note of where my body is. Some days I have had to say no and rest while other days I blow caution to the winds and live for a few hours. Just to feel “normal.” I like the new me… My faith in God has gotten stronger. I still walk barefoot in the sand, garden in the dark. As the new me emerges, I realize the changes I have made inside. I am stronger than I ever have been. I don’t hold on to anger. I know what it truly means to get back up and keep going when you lose everything.

I say this to those who are trying to find their way through the Autoimmune maze.

Hold onto your hope tight. Find things to give you hope. Laughter, humor,  and human touch is what you need even if it hurts. Find people who have similar conditions as you. Finding that person that says ” Yes I understand.” “You are not alone.” There are others fighting their own battle with their body, right along side you. Support groups and online pages, there are blogs with those who have fought their own bodies and found a way to cope. while others are in the same place as you are. Get back to living life with in your limits.

I am always searching for people with the voice of Autoimmunes. Part is I use to work with students as a teacher assistant, I know how important it is to find ones voice in writing. Where the writer connects with the one reading it. This is on loneliness… Tara Mo Perillo, the Cajun Warrior connects with what I have felt day in and out..

“You won’t understand until you walk in my shoes.”


“You won’t understand until you walk in my shoes.” I have heard this millions of times from my mom when I was young. I would pop my hip, roll my eyes, and mutter something rude to my Mom, like “You just don’t understand me!” It has taken me years to realize how true this statement was. What it really meant.

Some days I get frustrated where I am. I use to be able to change direction when things got stale or I was in a rut. Shake things up by an unpredictable event. Now I am standing still. Not able to push too hard, looking and wanting to be somewhere else. I have to wait for others to come to me. When they promise to come, I get excited because it is something new and exciting. But people sometimes change plans or don’t keep their promise to come. It hurts but I know I am never alone. I have God right there, He is the constant reminder that I am moving forward, inward instead of outward.

I used to get upset that people didn’t understand what a struggle it was daily, with my autoimmune illnesses and how I sometimes reacted to things because of my past. Then I remembered that in order to understand fully you have to go through the same or similar situation. I would not wish the road I have walked on anyone. It was full of pain, two alcoholics, loneliness, messy, depression, anger, turmoil, chaos and an illness that knocked me to the ground. When I was alone on the ground four years ago, in pain, weak, dizzy and shaking in tears, I cried out for my Father asking “Why me?” That night I got the answers and found my faith and trust that had gotten broken at an early age by those who were to be trusted and protect me. There were people put in my life at the right time, who helped me find the answers. My youngest daughter has given me scripture and chapters in the bible to read. Both my husband and daughter encourage me to go to church and bible studies. As I grow and learn, I am thankful for this journey in my shoes.  I have found trust, mercy,  grace, faith, and helping others through their walk all from my couch or the energy I have goes where God leads me. The best lesson I have learned is that no matter what comes my way, God is there. And when I am at my most vulnerable  I will learn a lesson, growing to reach that next inward goal.

People come and go, most don’t understand, and a very few have stayed by my side. The one constant that has grown my faith, is God… I am blessed…

Living with an Autoimmune

Living with an Autoimmune illness is like:image

Living with an unwanted room mate. They never clean up after themselves, steal from you energy, thoughts, health, movement, they are loud and keep you up when all you want to do is sleep, they have no manners, and control what you eat, think, feel, health. They are in the background looming and waiting to pounce!


Doctor, Do You Believe In Invissible Diseases?


Dear Doctor,

I was sitting in the waiting room for 30 min past my appointment. Your nurse then spent twenty minutes talking and asking questions. Now 1 hour after I got to your office, I sit across from you, I see it in your eyes. You don’t believe me think I am a fake! You only see what shows on the outside, I look healthy. But what you don’t see is the pain I feel day in and out. The war my body causes, in rashes, fatigue, weak, heavy feeling, dry mouth, being cold, avoiding the sun and florescent lights, hands and feet go numb, tingle etc…. As I sit here, I am feeling exhausted only two hours sleep. I had a hard night with pain and when I cough there is an electric shock pulsing in my arms, I have had for about a month.

The concerns I have about my feet being burned 2 months earlier, and not feeling them don’t concern you. When you look at picture I had of my feet you shrug it off. The symptoms I am telling you are real… I wish you could see me, the real me, the one ready to collapse. As you explain, my feet as a friction thing, stating I must have done an activity for an hour over and over, to cause the wound. I sit silent, not discounting what you say, because I know your “that doctor” who doesn’t believe in invisible diseases. What I didn’t tell you is that five minutes of walking is the only activity I had done for days, infact I had been in bed, sick and not able to do anything. I walked out barefoot on black top tar for five minutes, when I came back in twenty minutes later my feet hurt burned like I stood on a hot oven. The next day my husband noticed the blisters. I could not walk it hurt. No I didn’t come in, because I had a hard time standing. The only reason I brought it up is because of the other symptoms I came to you for. The hard to breathe and electric shock, I was so tired the only thing that came out was the eletric shock, which you focus on my b12 I am taking. You explain, “The B12 your taking might be to much. But that should not be why your feeling this shock only when you cough.” You then rattle off my meds asking me if I am truely taking them? Each time I say “Yes”  You then tell me I am not going to like your answer. You go off on a ten minute explanation about nerves. I stop you in mid sentence, “So you are not going to do anything?” You state, “Nope but if the symptoms get worse come back in and we can do a very painful nerve test, and a chest x-ray.” I walked away, so you didn’t see the tears. You didn’t even touch me, not offer to do labs of my vitamin levels that at first you seemed concerned with the levels, but only looked at my records that through you I realize my other doctor has not kept your office up to date. The last five years my diagnoses has changed…

Dear Doctor, what I should have asked you as you introduced yourself, “Doctor, do you believe in invisible diseases?” I now know what the answer would have been by how I was treated today. I have learned if a doctor doesn’t examine you, for your visit, he or she does not believe your symptoms are real. I will not be coming back to you, but will search for a real doctor with an open mind, that believes in helping a patient, not what he reads in a chart… I hope that a loved one or yourself does not have to go through what those with autoimmune disorders go through. You see it’s not the symptoms you face daily, even though they are draining, it’s when people don’t believe you that can knock you out…


Lupus, Sjogren’s, Raynauids

Fibro, Neuropathy, Vasculitis, Osteoarthritis,


The line between 😍 love and anger😡

This morning I woke up to post after post of “Happy Father’s Day, Daddy”! Every time I went to post something for my dad, my mind went blank. I asked myself “Why is this so hard?” I realize I have been pushing back my feelings and letting them fade, or so I thought. Yesterday, I had to face some hard moments about my dad while supporting someone who I love going through the same thing I did with my Dad. I then focused on the signs of my body, the itchy rash on my chest, I walked into a wall, slipped off a step pulling my shoulder, and just this morning I jammed my baby toe. My mind was not focused on things like breathing, walking, or going where I needed to. Yes, the signs are there. I am avoiding my feelings. Father’s Day is hard for me some years. There are a mixed bag of emotions swarming over me this year. I am trying to focus on the good but I can’t seem to shake off certain emotions. Sadness and anger are very powerful emotions. No matter how much I try to deal with them, they creep back up. On the one hand I miss my dad. There are good memories. I try to honor those and let the rest fall away. He made choices that caused harm to others, including me, and he drank away his life, which caused him to leave this earth too soon. He partied and drank, choosing to numb his mind every time. He could not face things in his life so he drank and hid at the bottom of a bottle of booze. I think that is why I am the way I am. There is no bad memory or feeling or life in general that I won’t face head on. I choose happiness and my family over anger and despair no matter how hard life gets.

Don’t get me wrong, there are good memories of my dad. There are moments of him swinging me around and flipping me up over his shoulders, from telling jokes that made me belly laugh so hard that my sides hurt for days to making me bikes out of junk parts. I always had the coolest looking bikes in my neighborhood. I get my love of nature and adventure from him. He was a good father but he let life knock him down.

I have learned that health and emotions go hand in hand. If I only think about the hard and sad moments I notice my autoimmune disease kicks in. I go down faster than a boxer who was not prepared for his opponent. So today I choose to not push down these emotions of anger and sadness but acknowledge how I feel today. Let them in but also let them go. I choose to remember the good things and let the rest fall away.

Now for the other side: Love. I am the luckiest girl on earth, for God put a man in my life at age 19 who showed me the other emotions. My husband is an amazing man. He’s an incredible husband, my best friend, the man I truly love, and an amazing father. I have watched this man choose his family every time when things got hard. He has wiped tears, lifted his girls up, been present in their lives even when work took him away, and been patient when sane has left the building living with three woman in the same house. I can count on one hand the times he got mad. It is from these two men that I have learned the importance of how we choose to live, between love and anger, is where our life is.

There is one emotion that is more powerful than all other emotions, and it is love. No matter how angry and sad I am today I will focus on those I love and the good moments. Anger and sadness won’t win, it can’t, the price is too high… I choose ❤️

There all kinds of pain


I am like Forest Gump’s friend Bubba who knew a lot about shrimp. Except mine is with pain. Achy pain, alone pain,  all over body pain,  ankle pain, autoimmune pain, arthritis pain, back pain, bad news pain, bone pain, break up pain, broken bone pain, cold all over pain, discourage pain, dull pain, dry eye pain, electric pain, elbow pain, emotional pain, exercise pain, eye pain, foot pain, fibro pain, flu pain, fighting pain, friend pain, frozen pain,  frustration pain, getting old pain, head pain, high blood pressure pain, hip pain, joint pain, knee pai, knock you to the ground pain, leg pain, lighting bolt pain, love pain, low blood pressure pain, marriage pain, migraine pain, mind numbing pain, more than one pain, mouth pain, neck pain, not able to focus pain, over doing it pain,  over thinking pain, pain of loosing someone, phantom pain, physical pain, pressure pain, relationship pain, roller coaster pain, sharp pain, shoulder pain, skin pain, stress pain, toe pain, vasculitis pain, vein pain, weight gain pain, when our children hurt pain, when our children leave pain, and wild all over pain. And that is what I know about pain so far….