My mom passed away today. I will be taking a break to attend to family matters.
My mom passed away today. I will be taking a break to attend to family matters.
My mom passed away today. I will be taking a break to attend to family matters.
September is National Pain Awareness Month.
I have a chronic pain disease called Fibromyalgia Syndrome.
You can read what fibro is: here.
(This is a typical night for me. I describe it as follows.)
I think the hardest thing for a person with chronic pain is to tell you how they are doing. (Seriously.) You ask me how I’m doing… really? Let me start by asking you, “do you really want to know?” (Probably not, sometimes maybe?)
When you ask me how I am? “I’m fine.” (That’s a flat out lie!)
I’ve read a few posts where bloggers are addressing pain, chronic pain. They are describing what pain we face and what that looks like because September is Pain Awareness Month. My friend, Terri at Reclaiming Hope describes a typical morning for a person with chronic pain. Terri could have been describing my mornings. You can read her story: here.
I will tell you what a typical night feels like for me.
It begins at about 5PM. I get very tired and extremely agitated. My evening will be filled with aches, pains, and irrational episodic thoughts… I will question my worth in this world.
I try to stay out of sight as the early evening turns into the late evening. I know bedtime is coming and without something to keep my mind occupied, it’s going to be a very long and painful night. The clock says it’s bedtime, as I crawl in, it begins. Pain. Unrelenting body pain!
I may be successful in falling asleep on my own, typically not, then I rely on a medication for sleep. My ears feel full of pounding blood. My legs feel so heavy I want to get a knife and stab them until I feel relief! My hip feels like my leg has fallen out of the socket, and my lower back starts to spasm. But these pains are the easier ones to deal with… it gets much worse.
Are you still with me? Have I shared too much? It’s very possible you are bored or feeling somewhat miffed! After All, you are an intelligent person. You certainly can tell if another person is in pain. Well, I don’t look sick! I might look tired, but not sick. I am in real pain every single day.
The night continues, and by this time I have been up at least three times. So here we go again as the next symptoms have their turn with me…
My arms will start jamming up, causing shooting pain throughout my elbows, upper arms, neck, head, and shoulders. As I try to relax, I’m often jolted back into my harsh reality by shooting pain. I try to hold myself tightly as it feels like my body is being pulled apart by some malevolent being. This is very unsettling not to mention extremely (yes) painful!
After diagnosis, a few years into my illness, I became basically bedridden. At the beginning of my relationship with my future hubby, I would be awake about four hours a day. That was it. My normal. I could push through a day once in awhile. I made sure to spend that precious ‘awake time’ with Jeff. Then this disease turned upside down on me. I now get maybe a total of four hours of sleep at night. This lack of sleep causes me to lose days! I am mentally a train wreck and physically spent and in pain.
But. You ask how I’m doing?
I believe I am revisiting past physical trauma.
I am struggling with a flare. This makes sense as there are so many significant changes happening in my life (selling my home and moving while flaring!). But. This flare is eerily similar to those flares I had right after the car accident I was in. How am I to handle this? Has my body reverted to experiencing traumatic events by responding to how it used to? Emotionally this is a bit of a train wreck to try to deal with!
Am I revisiting trauma?
I have had my toolbox out and found my ability to Zentangle (a planned pattern that is repeated) is limited. I can set up one, but I cannot make the patterns the right way, my spacial judgment is off. Crossword puzzles are not an option at this point either. I can’t remember names of items I know, let alone come up with words I am not familiar with. I am unable to sleep for more than two consecutive hours due to pain waking me. I am taking rescue medication for pain and sleep, but it is not helping much.
Am I reverting to past behaviors because of trauma?
My husband looked at me yesterday and said, “I’m concerned.” I asked why, and he stated he hadn’t seen me take this amount of pain for this length of time. I responded that it was simply a fibromyalgia flare and that I could deal with this. He looked doubtful, walked out the door, popped his head back in, and said, “Keep fighting.”
Can I continue to fight this flare, at this intensity for much longer?
The short answer is yes. Of course, I can (and will) continue to fight. The worrisome part of this answer is how? I went back to basics. I got out my therapy belt, the Sympathetic Therapy System (STS) machine (the STS machine is no longer being manufactured, sorry) and the Epsom salt. I found my body pillow and my hot packs. I’m back to using popsicles and crushed ice to control my nausea and severe heartburn. I am taking my magnesium and my B12 shots… this will work, it has to.
I am experiencing a trauma-induced flare.
The rush to sell and pack, leaving the home I’ve known for the last fourteen years had an impact on me that I wouldn’t have guessed possible. It was traumatizing being in so much pain and having to continue the activity (packing and moving) that triggered it. But this is just a flare. This means although my pain is more intense, this is only temporary. I will come out of this flare by fighting each and every symptom it throws at me and managing them.
Does this make sense? Have you ever been happy and sad at the same time? Happily sad? Thinking of memories, some make you sad, but you are still happy to have these memories. That’s where I find myself at this moment. I am happy sad…
Currently, I am at our family lake home. This is my Dad’s homestead. Now it’s been passed to his children, I’m one of five living siblings. I do have two other brothers who have passed on. One I didn’t know, born before me, stillborn. One died at the age of 37. The 37-year-old was in the Army, single, his death benefits came to our family. He wanted this money to be used to build a house on my dad’s property that we could all enjoy, and gather as a family. His dream came to fruition and our lake house has a bedroom for each of us, including a sixth in his memory. It was a happy sad moment upon completion. Sometimes still is.
Saturday, we toured assisted living facilities with my parents. [Happy sad.] I was watching my parent’s worried looks as we started the first tour. But they relaxed, both having visited relatives and friends at these facilities. They were familiar with the sites but didn’t believe they may one day be residents.
We were treated to lunch after our tour at the first facility by the program director. This facility was like a small city under one roof! There were two restaurants, a hair salon, a heated pool, a post office, a movie theatre, a work out facility, a boxing gym, pool tables, a library, therapists and trainers on site… amazing. After we had ordered our food, my dad and I were sitting together and he explained to me that although this was nice, he had the farm… the lake house we owned as a family. [Happy sad.] I had to explain that he would always have that, but mom was in poor health. The facts pointed to sooner rather than later, she would need a nurse. My dad, as healthy as he was, would not need medical care but he needed to get mom the care she would need. [Just sad.]
We toured the others, then headed to Dairy Queen! [Just Happy!]
We dropped off our parents at their townhome to rest, but it wasn’t long before they joined us at the lake house. I couldn’t remember the last time I was with all of my siblings and my parents at the same time. [Happy sad.] We had an evening of laughter, serious discussion, and more laughter. I was very aware that these gatherings were becoming very rare and would eventually come to an end.
Life changes. Circumstances change. Health declines. Being present, in these rare beautiful moments, is the only way you can keep them … in your heart. Time marches on. No matter how hard we try to slow things down, Father Time keeps the clocks wound. You can’t cheat time. Beautiful moments happen in real time be they ever so fleeting. [Happy sad.]
Social Security is a Federal program we pay for every day of our working lives. I started working when I was 15 and paying into Social Security. I looked at those steep payments being taken from my check every week as a savings plans for retirement. I also knew in case of injury, I was paying into Social Security so it would be available for me if the need ever should arise. Just like having insurance on your home, car, and your very own life, this was a safety net. In the end, I needed it, and I am on disability.
Is social security an ‘entitlement’? Hell no! I paid into the program!
Why am I still so embarrassed to tell people I am on disability? Are you on disability? Are you comfortable with that? Tell me if you are because that is one thing I can’t shake, the shame I feel for taking checks from the government for a monthly payment. The disability checks are not near enough to live on, let alone pay for the needed medical attention due to the injuries that put me on this very program! People making minimum wage make twice what I do in a month and that was before the $15.00 per hour minimum wage went into effect. I used to work at McDonald’s, I’d have no qualms about going back to work there now and claim my $15.00 an hour … but I am not physically able. I am disabled!
It sucks being on disability. Calling it an entitlement only worsens the stigma. I am already filled with shame. I blog, I admin a facebook support page because it makes me feel that I am somehow earning that check; that disability payment. Does that even make sense? To me it does. I was ‘medically released’ from a job I loved. I enjoy helping people and answering their questions so blogging and admining a support group makes sense to me. Giving back and earning that government check …
I finally have an answer to the dreaded question, “What do you do for a living?”
I am an advocate for fibromyalgia awareness, I published a book, I am a blogger, and I admin a support group. That is my identity. My reality is that I fight the fibromyalgia pain demons every day, take my medication as prescribed, and research every aspect of my health for answers. I fight the chronic fatigue and try to keep a clean house and a satisfied husband. I fight the sleepless nights and exhaustion every day to check in with my group and write a blog. I don’t always win, but I fight.
And, I forgot to mention, I receive a check from the Federal government from a program that I paid in to… there should be no shame in that.
In my bed.
Rise and fall,
Veins beat with pain.
In the darkness.
In my body,
like a song.
Hold my breath,
Pain pulsating, no!
is my own?
Pulsing pain beats.
Rise and fall.
A while back I wrote about having to “make the dreaded call” to my doctor. Things were not going so well and I knew I was getting used to my medication. It just wasn’t working anymore. So, time for new medications that come complete with side effects. The first two weeks are the worst, tapering off one and getting up to the required dose of another. After having fibro for over 20 years, you would think I had this medication gig down pat. No. I don’t think I have ever had a smooth transition from one medication to the next.
Let’s recap a bit. I had about a three-week bought of severe depression, to the point my husband was afraid to leave me home alone even though I reassured him I would not harm myself. My fibro flared, I felt as if all the skin had been peeled off my body exposing every nerve, and to top it off my restless legs decided to join the party! I could not sleep. Let’s just say April wasn’t my month.
The day the new medications arrived I began the process, taper off medication ‘A’ and begin medication ‘B’ while adding medication ‘C’. Ride the medication rollercoaster and try to stay away from innocent people because I have turned into a genuine wicked witch. But. The hubby is always within reach…
(Thank God I am married to an understanding man.)
Jeff. “How are you feeling?”
Me. “Like Crap.”
“How are you feeling?”
“How are you feeling?”
“Like dying!” etc… on and on for two weeks.
Finally, one morning as I was sitting up in bed waiting for Jeff to bring me coffee, which he faithfully does every single morning, I mustered up the courage to tell him I was sorry. He handed me my coffee and crawled back into bed sipping on his own cup of coffee. He was telling me not to be sorry (which made me sorrier) and that we’ve been through worse and we’d get through as many medication changes as it took to get me back to feeling better.
“I’m so tired of being sick!”
“I don’t think I have any fight left, will you fight for me?”
“Honey, I’ve been fighting for you since the day I married you.”
“God, you have…!”
“Just think how far you’ve come since then.”
When we started dating I ‘pretended’ to be in pretty good health but the second night I spent at his house I woke up in a flare. He pulled out some sweats for me to wear, I put them on and slept the day away on his couch. He rented a movie for us that night Fools Rush In and made potato skins with three different dipping sauces. He pulled a little table over to the couch, placed a tablecloth on it and the potato skins with little appetizer plates. We ate and watched the movie. I knew I was in love with him from that night on. (It was the potato skins that won me over!) No, it was his gentle soul… his ability to care for me. The first year we were together I was awake for about four hours a day, otherwise, I slept. He helped me move in with him, and he took care of me as I did my best to fight to come out of the fatigue and be present for him. We married about a year after we started living together. He has never once stopped being my friend, my lover, and my partner in crime! I honestly get to say, “I married my best friend.”
It took us awhile to find each other again, we grew up together in the same small town. Our families were very close. Jeff remembers when I was born. We’d known each other our whole lives! But, we each went in separate directions for a while. We loved each other as friends do. Once we ended up in the same city again, we decided to try going out on a date… then another and we just never stopped. It took time to figure out we didn’t just love each other, but we were in love! We decided we were. We are! We know it is a happily ever after story with a few bumps and bruises called life.
We live by our wedding song, At Your Side by the Corrs. Kinda corny but we are a corny couple! Have a little listen!
October 9, 2004, Chapel in the Pines. We are leaving the chapel as Mr. and Mrs. Jeffrey Johnson! I can’t stop laughing I am so happy! And the Corrs are singing our song…
And still, close to 14 married years later… laughter!
~Kim and Jeff
Ample Make this Bed by Emily Dickinson is by far one of my favorite poems. Maybe it had such a big impact on me as this was the poem read in Sophie’s Choice (after the death of two endearing characters). Whenever I am sad, whenever life takes away someone that I love… I revert to this poem.
I find comfort in her words. I find peace. I have lost a person I loved. I believe the whole world would’ve loved her if they had known her. All those who did know her loved her so. Her loss is deeply felt. Rest now, my dear friend.
Ample Make this Bed.
Make this bed with Awe;
In it till judgment break
Excellent and fair.
Be its mattress straight,
Be its pillow round;
Let no sunrise yellow noise
Interrupt this ground.
Kory was 37 years old when he died from a very aggressive form of cancer at the Brooke Army Medical Center, in San Antonio Texas. Kory was a Specialist in the U.S. Army. Kory became my little brother when he was 9 years old, we adopted him from South Korea. Kory was my brother for 27 years until his life ended on August 18, 2003.
He was holding our Dad’s hand as he left us. We miss him.
My Brother, My Soldier
We are so far from home,
he and I.
Engulfed in a land so foreign to us,
a city within a city.
At times he is stubborn and full of mischief.
Teasing and laughing, the brother I know.
There are times when he is reflective,
Speaking as if communicating with the Divine.
He is so thankful for the help he receives,
and so apologetic when he is in need.
He loves and hugs all who are near,
Only they and I experience the fear.
His body tires and his eyes close,
he puts his hand in mine.
I wait silently for him to wake,
and I greet him with a smile.
I tell my brother he is a good soldier.
I tell my brother I love him so.
I tell my brother God is with him.
I tell my soldier it is alright
…if he is called to go.
Honestly, it has been quite a while since my husband and I got on a plane for a vacation but we are fortunate to share ownership of a lake home with my siblings. This was my Dad’s original homestead and was even recognized as a Century Farm! Our family received a plaque at our county fair and ate cake! (And I had a corn dog with lots of mustard… I’m at the fair!) A Century Farm award is a big deal in our little farming community. The award means that the land has been in one family and farmed for over 100 years, although, it has been over 150 years of our land being farmed! My Dad was so very proud.
Let’s talk travel!
How many people does it take to get a person with fibromyalgia ready for a trip? Just kidding. We are going to define “trip” for this post as a vacation you can go on by car. (We’ll tackle by plane another time.)
Getting ready for those trips or family get-togethers (as summer is supposed to show up sometime yet this year) when you have fibromyalgia takes planning and preparation…
There you have it! All ready for the day trips or extended stays. With the family or without. It is essential to travel. Go somewhere! It is the best thing you can do for your mental health, and it gives you something to look forward to doing with your partner, kids, friends, or even by yourself. A cabin by the lake is a beautiful respite!
Live your best life!
(The hubby and I are fine, this is not his song!)
The dictionary defines shadowboxing as a form of exercise used for training in combat sports. In psychology “shadowboxing” is a process one uses to overcome a negative self-image so success can be achieved. In the book I co-wrote, The ShadowBoxers, Fighting Fibromyalgia, Your Personal Journal, we define Shadow Boxers as individuals who are fighting against a disease they can not see. We fight to maintain health in the body, mind, and soul.
If you are thinking about purchasing this interactive journal, it doesn’t matter where you are in your disease, this journal will help you make sense of what is happing. If someone you love has fibromyalgia, this book will explain what they are going through. I am thrilled to list a few of the 5-star reviews that were received from Amazon customers who have purchased this book…
I thank the above for their great reviews, and there are more on Amazon! So generous and kind with your comments. Receiving, then maintaining 5 out of 5 stars since July of 2017 is very humbling. It is not only humbling, it feels like I have received a gift I had dreamed of but never thought it would come true.
May is National Fibromyalgia Awareness Month.