Are you my Friend? (With Wendi at Simply Chronically Ill.)

Friendships are hard to maintain on a good day. What about those not so good days? What about living with an unpredictable chronic illness while trying to be a good a friend.

So, do you have friends?

cs lewis quote on friendship 15 Famous Quotes on Friendship

Wendi, at Simply Chronically Ill, talks about Friendships and Chronic illness;

“This is a tough subject for me to write about as it brings up a big bag of mixed emotions.  Chronic illness makes relationships tough, very tough.  When you have been ill as long as I have, friendships tend to fall by the wayside.  People in our society want a quick fix, “feel better soon” is on so many cards that I want to puke.  CI doesn’t work that way… [Continue Reading]” 

Are you a blogger that writes about fibromyalgia? Join your peers at the Fibro Bloggers Directory.

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There is ‘Stuff’ Going On …

I have a hard time staying present when talking to friends, family, even my husband some days. I am always bringing up the past, my past. They have raised families, attended weddings, vacationed, changed jobs, moved … all the things ‘normal’ people do. I wonder, is my thought process that stunted? It is. I am more than a bit self-centered when it comes to dealing with my illness. To me, it is the most important thing in my life. To others, it simply is not. An illness is just ‘stuff’ that happens, usually to others

Let’s face it, most people are either healthy, or they are not. They are fat, or they are not. They are happy, or they are not. And when you ask them how they are? They are fine. When you ask someone with a chronic illness how they are… it depends. If they have had their illness for some time, they are fine. If they just got it, you will get an inventory of how they are feeling. If they are not feeling well, you may get, “Like you care?”

No wonder those of us with chronic illnesses do not gain much favor after the diagnosis of ‘chronic’ comes. It’s really a crapshoot dealing with us! A gamble. We are certainly not current in our thoughts, ideas, or family events and happenings. Even though chronic illness tends to take away our ‘ability to engage,’ we try to fight our way back. So, just what is there to talk to a chronically ill person about besides their illness? Those of us with chronic illnesses need to think of ways we can communicate and be present in our lives!

Human beings, in general, get over ‘stuff.’ An illness to most is just ‘stuff.’ People have a lot of ‘stuff’ happening in their daily lives. To a person with a chronic illness, this ‘stuff’ is an all-consuming, every minute of an everyday companion. It must be listened to, cared for, attended to. Hence, we must seek balance. We must seek some semblance of “normalcy.”img_1699

It is time to put the little monster called fibromyalgia on a schedule. You can’t just ignore it, although at times you must put on a brave face and pretend it doesn’t exist! There is a process you must learn. You must re-engage in real life. Current life. When was the last time you had a conversation about anything without an illness in it? Aches and pains, flares and fog? Can you think of a sentence that doesn’t start with, “Because of my [insert name of disease]…” Your deceptive little chronic companion stamps its feet and demands to be heard! It is a two-year-old throwing a tantrum. Guess what? We are smarter than that two-year-old.

We are smarter than a two-year-old. We are done being controlled by a tantruming, time-consuming illness. We will tend to it, on our terms! We will pay attention to it, on our time. We will re-engage in current events.

Ideas:

  • We will find a support group in which to share our feelings, ideas, and resources with.
  • We can make and follow a schedule to reduce the probability of fibro flares.
  • We can follow our medication schedule to keep flares at bay.
  • We can stretch and gently exercise every day.
  • We can pursue hobbies that have nothing to do with fibromyalgia.
  • We can keep a journal, ‘My Complaints Journal’ so we don’t feel the need to report our ills to others, uninvitedly.
  • We can seek out daily, positive activities so we can open a conversation that is pleasant and cheerful.
  • We can take charge of our illness, to the best of our abilities, it will not be in charge of us.

What are additional things, ideas, and/or activities,  we can do to participate and engage in the present?

Let’s live our best life!

Screen Shot 2018-02-25 at 12.48.43 PM~Kim

Before I Tripped Over a Stone, Fridays #7

(We are continuing from last weeks entry Before I Tripped Over a Stone, Fridays 6.)

I have taken a position as a Psychiatric Technician (psych tech) and was just removed from completing my first admission on the unit. I have been told to wait in the Unit Director’s office. As I’m sitting there, she comes in, looking furious, and says this will be recorded.  She puts the device on the table and hits record.

“Did you proceed with the admission process for “L”?” 

“Yes.” 

“Did you attempt to strike her father?”

“No.” (The charge nurse had told me what to say to the director’s questions.)

“Did you attempt to crawl over the admissions desk to inflict physical harm on this man?”

“Nope.”

“Did the unit charge nurse escort you from the room?”

“Yes.” 

“Why?”

“I wasn’t feeling well, I needed a bathroom break and then she told me she’d finish the admission.”

“That ends the session with Kim ‘——–‘, Psychiatric Technician for the Adolescent Crisis Unit on September of ‘——‘. I find no further reason to pursue this claim as the unit charge nurse corroborates her story.”

She clicked off the recorder and said someone should’ve put that man in his grave 20 years ago. “You have a verbal warning. Don’t ever do that again.”

“Never again.” (And I made sure it never happened again.)

Just then, the operator announced, “Dr. Red on ALTU (Adolescent Long Term Unit).” Shoot I don’t know where that is! “Dr. Red to ALTU immediately.” I see another psych tech from my unit hauling ass, and I know he was assigned to respond too… I take off on a full run after him, pulling off my earrings, necklace, and rings, shoving it all into my pant’s pockets.

We get to the unit, and we are quickly told what was going on. One male, 14 years of age, slit his wrists and barricaded himself in his room. He has been throwing his bedroom furniture at any staff who tries to enter his room… They have one psych tech severely injured, she was removed from the unit. The other kids are getting agitated, and we may have two more possibly aggressive patients that may need intervention. The patients have been sent to their rooms, but I see two psych techs standing outside of two doors, I figure that’d be the room for the patients that were ‘in need of possible further intervention.’

We now get our orders from the psych tech who was assigned to this patient… we will be going through a bathroom door with a mattress to keep us safe and gently tackle him. The psych tech hands out the positions for the 6 point restraint. I am asked to clear the furniture from the front door of his room so they can carry him out through that door to the time-out room.

We had about fifteen seconds of surprise on our side as we came through that bathroom door. That door had been locked because it is on the female side, the patient used the bathroom for males on the other side of the room. He never expected us… and gave up without too much of a fight. I had the broken dresser drawers removed, and the bed frame pushed back, the path was clear. He was taken to the time-out room, the unit psych nurse attended to his wrists while we removed his shoelaces and belt. We all backed out as the lead tech instructed, and the door was closed. This patient would be put on a suicide watch, and a psych tech would remain outside the door making a note of his behavior every 15 minutes.

Restraint completed, patient unharmed, safe and secure. All staff involved in 6 point restraint procedure, unharmed. Procedure sheet signed and dated, we return to our respective units.

I had only been at work for 2 hours… the rest of the day was pretty quiet thankfully… I got all finished up with “L,” getting her settled. I received a few low fives from my co-workers… I thought well, that was a terrible way to start my shift but they all seemed to approve of me. It has got to get easier. Nope… this was what a quiet day on the crisis unit looked like.

I have some very memorable patients for you yet to meet and a few outstanding psych techs that I had the honor of working with. Amazing psych techs. Incredible kids. Incredulous stories, and a tragedy that knocked the wind out of me for days.

(To be continued.)

img_0156~Kim

Before I Tripped Over a Stone, Fridays #8

Revisiting the Stage of Acceptance.

 People are well versed in the five stages of grief;

  • denial
  • anger
  • bargaining
  • depression
  • acceptance

But these stages are for the dying. These are the stages that a person with a terminal illness will work through to reach a form of acceptance at the end of their life. 

Those of us who are left on this earth to grieve for the loss of our loved one grieves quite differently! We mourn ‘loss’ not in any order of the 5 stages of grief. We re-visit and re-visit these stages in any order, as many times as it takes to reach some level of acceptance.

Remember, the grieving process for the dying and those that are left on this earth to grieve are vastly different.

When you are diagnosed with a chronic illness, such as fibromyalgia, you must go through your own process of grief. Your old self, the person you used to be is gone. A new person who is consistently in pain has arrived, and this is not a natural process to go through nor understand.

There are feelings of loss over what once was, and this process takes time.  However, a chronically ill person must grieve the loss of their old life to move forward to a new one. You cannot deny it, stay angry to keep it at bay or bargain with the illness. You will get to the stage of acceptance, but first, you must grieve. And your loved ones will more than likely need to grieve as they lost the person you once were as well. You look the same, but you are not.

Acceptance of our limitations and finding ways to work around those limitations are what a person with a chronic illness tries to reach. That is our stage of acceptance. Once we enter this stage of acceptance, the real work begins. We stop looking for the “miracle” cure and that elusive doctor who has all the answers. We stop trying every weird supplement, and latest diet craves. We stop using the energy we do not have just for the sake of looking busy. We are fed up with being forced to attend the same therapies that have not worked for us; physical therapy or massage therapy or acupuncture. We realize going on and off medications is causing more problems than good.

So now what? We stop! We take a deep breath and usually cry. We cry just for the sake of crying. Maybe it is to cleanse our soul. Maybe it is to feed it. But we accept what we will be living with.

Now, we begin to take the medications that work, do our own exercise that makes us feel good. We may eat an occasional cupcake, but we eat the colors of the rainbow, a healthy diet. A beer in the summer or a glass of wine at a celebration is fun. That vanilla latte in the winter is yummy. Yet the goodness of ice-cold water and the calming effects of tea are preferred. We have found where new interests lay and forgo talking about our illness except to others who have the same thing. We have stopped apologizing for a disease we didn’t cause. We still live with the pain, we experience the occasional flares of increased pain and the terrible fog that clouds our mind at times. But we get through, and we do it again, and again, and again. That is acceptance.

Live your best life.

Screen Shot 2018-02-25 at 12.48.43 PM~Kim

Before I Tripped Over a Stone, Fridays, #6

The Crisis Unit, my experience as a Psychiatric Technician.

I was 20 years old. I walked on to a locked unit to counsel teenagers that were a few years younger than I. (What had I gotten myself in to?) My title, Psychiatric Technician (psych tech). I had completed a behavioral assessment test and my background working in mental health since my senior year of high school assured that my possible employment would be considered. I was asked to come in and train for a position. My training; two weeks of intense 8-12 hour days with tests and proper physical restraint technique drills (three, four, and six-man). The inclusion of a basic first responder certificate was also to be obtained by the end of the two weeks. I started training with a class of twelve. Eight of us finished.

I had worked the previous summer as a camp counselor for children with aggressive tendencies and educational challenges. I knew once the summer was over I would need to get a real job, my first year of college didn’t go so great. I needed time to plan my next move, I wouldn’t be returning to college that fall. Some of my fellow counselors had asked me to apply for a position at a psychiatric hospital where they worked during the school year. During the summer, fewer counselors were needed on the unit as summers for teenagers is the time to run wild. However, come fall, the school system maintained an accountability factor for the whereabouts of the students. This is when a non-compliant teen with severe behavioral issues would end up in a locked unit. So camp counseling in the summer and the unit during the school year… it sounded good to a 19-year-old (soon to be twenty)!

Bang, click! The door slammed and locked behind me. I was ready, I had aced my training, but my entire inner being was shaking. I was assigned to the adolescent crisis unit. There were short-term and long-term units. The crisis unit was just that… a two-week crisis holding unit for evaluation and placement to one of the other units, or secured holding while incarceration evaluations could be conducted.

I walked down a long corridor with doors to bedrooms on my right. On my left were a community room and the nurse’s station. I turned left down another hallway where the classrooms were. We would be having a staff meeting in one of these rooms. Our unit’s psychiatric head nurse was in charge of the shift.

I was assigned to 4 patients. Responsibilities included getting them to their required activities and psychiatrist sessions. We were to have one-to-one counseling sessions each shift with our patients following ‘SOAP’ (Subject, Objective, Affect, Plan) notations in their charts. Each of us had an assigned area of the unit to monitor. Then there would be admissions. Depending on the number of admissions scheduled, we could nominate one tech and take their patients, or we could each do an admission.

Finally, there was the assignment for emergency response teams. If the intercom announced ‘Dr. Green,’ one tech was to go walking to the unit announced to assist with calming down a patient and participate in a possible 6 point restraint. (This literally means there are six people doing a restraint to ensure the patient is not harmed.) ‘Dr. Blue’ was a fire; unlock unit entrance doors and make sure the entire unit was evacuated. Then there was ‘Dr. Red’ which was to send at least two psych tech’s running to assist with an uncontrollable unit, staff possibly in danger!

These techs were not playing! It was my first day, but they definitely were going to test me. I was young, the youngest ever (I found out later) to be employed as a psych tech on their unit and they honestly didn’t think I’d make it. You had to trust your fellow employees in tough circumstances. I was assigned to ‘Dr. Red’ and had three patients that were violent and one with suicidal tendencies… I also was to complete one of the three admissions scheduled for that day … so another tech would observe my patients while I was doing the admit.

Little did I know this one admission would end up making or breaking me.

My first admission and I can remember every detail, this was nothing like I had trained for. This was real, and I almost assaulted this girl’s father. (Smug perverted molester.) I wanted to beat the crap out of him…the psych nurse was able to physically stop me from reaching the man I so badly want to beat… she pulled me outside and told me to walk it off, she would finish the admit. I thought ‘I’m done, probably fired.’ So I walked to the bathroom and threw up. I couldn’t stomach what I had just heard.

What this young girl of 14 had been through…

(Continued, Before I Tripped #7.)

img_0156~Kim

 

Find Your Tribe

Over the weekend I received a message from a wonderful woman who wanted to purchase a few of my books. I was happy she was interested and began to get her information. Then she said to me, she had just lost her best friend to suicide because she was in so much pain and no one believed she had fibromyalgia.

How can this still be happening? How? Yes, Fibromyalgia Syndrome is an invisible illness, but it is a chronic pain disease. It has officially been entered into the International Classification of Diseases Classification Manual (the ICD-10-CM) used by doctors worldwide. Fibromyalgia has been named the second most diagnosed rheumatoid disorder according to the BBC World News.  There is a blood test for a fibromyalgia diagnosis (the FM/a). MRI’s can detect the brain pattern of a fibromyalgia patient. There are commercials explaining Fibromyalgia on the TV! What else needs to be done?

“You don’t look like you are in chronic pain.”

 A woman I know told me this was said to her just last week! Her response was, “What does a person in chronic pain look like?” I believe her response was fair and just after being basically accused of lying about being in pain.

It is common for those of us with invisible illnesses to not be believed. We lose friends, family, employment, and our sense of self-worth. We isolate but in public, we shine. We work to put on an acceptable outfit, make sure we have some color on our cheeks and cover up the dark circles under our eyes. We smile through the pain. We walk down the street with grace even though every step makes us feel like crying. We make sure no one sees us fight back that pain. Why? Because we are used to not being believed.

I have been advocating for Fibromyalgia Awareness since November of 2016. That is when I started blogging, running a support group, and writing a book. I have had fibromyalgia since 1998, I was diagnosed officially in 2001. I had researched, read, questioned and learned every single thing I could before I made my stance as an advocate. I know I will never stop learning!

My biggest mistake? Believing others were learning about fibromyalgia while I was. The second mistake I have made? Believing that those around me wanted to learn about fibromyalgia. You must be careful and pick your tribe. Those who are not willing to accept your disease must be left behind as they will only hinder your progress and in severe cases lead you to your demise.

Find your tribe, your support system. Depend on those people, and they can depend on you.

We have much work yet to do. We must teach without expectation and continue to learn without assurances that those around us will follow us on our educational journey.

Always remember, you ARE enough!

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Before I tripped Over a Stone, Fridays, #3

I started writing about the topic of domestic violence that I had experienced (almost 30  years ago) three weeks ago. I have noticed that I have been experiencing some memories that I thought had been long forgotten. Certain smells, songs, even a knock at the door have been a bit alarming, so I am going to round out today’s post and end this story.

If you want to catch up, I will post the links to the previous two posts, but first I must start with this;


Warning: Domestic Violence Content.


For your review:

According to the Huffington Post; The number of American troops killed in Afganistan between 2001 and 2012 was 6,488. The number of American women who were murdered by current (or ex) male partners during that time was 11,766. That’s nearly double the number of casualties lost during those years of the war.  

Women are much more likely to be victims of intimate partner violence with 85% of domestic abuse victims being women and 15% men. Too many have been held captive by domestic violence – whether through physical abuse, emotional abuse, financial abuse, or a combination or all three.

I was finally out of “R’s” grasp and safe at the women’s center on campus. There was no more time to waste. I would be going into hiding. Everything I had prepared would need to be left behind. I needed to disappear now. Paula helped me make some awkward phone calls, and I got in my car and drove to my parent’s home.

The sheriff was called so the protective order could be carried over into the county I was now residing. My car was hidden, and I moved into a basement room, much more secure and out of sight than my original bedroom. I was offered a ticket to Boston to stay with a family member, and my job would be cleaning airplanes. BUT. I had one class left on campus and an internship I could complete from anywhere. Three more months and I would graduate. I stayed.

I would drive different cars (never my own) every week to campus. A security guard would meet me. He would walk me to class and then from class, back to my car. My professor knew what was going on so I interned in a different city and he would meet me at random restaurants to discuss my assignments and review the ones I had mailed in for him. I got my diploma!

Things didn’t go quite that smoothly, but I got through it. There was a lot of emotional turmoil, mental anguish, embarrassment, and difficult experiences even after leaving “R.”

But I made it!

Shortly after I graduated, I started working for the Region IV Council on Domestic Violence. I was a court advocate for women and men who were experiencing domestic violence as well as an advocate for a woman’s shelter. I worked with that program for a little over a year. I loved working for the Region IV Council. However, I knew I needed to make a change for a bit. For my own mental health and a much-needed change of pace.

I moved to Minneapolis and started working as a mental health counselor with mentally challenged adults. It was a very different change of pace! I would go through much needed emotional healing as I met new co-workers and cared for these people I worked with that were so vulnerable.

I had made a healthy decision, it was a good change. I remained in touch with Paula.

I was free!

(Continued, Before I tripped #4)

img_0156~Kim

  • Domestic Abuse Hotline 1-800-799-7233
  • TTY 1-800-787-3224

Now I’ve Done It…

Have you ever signed up for an online course? Well, I did. AWAI. American Writers and Artists, Inc. I saw their ads and answered the call! They are a copywriting firm, basically. What I didn’t realize is they use a hard sell tactic to get you to believe that without ANY PREVIOUS writing experience they can teach you how to be a copywriter. Well. This should be a snap! I write a blog, I wrote a book… I got this! What was I thinking?

The good news; I think this program is a winner. The bad news; I’m taking an accelerated course and not accelerating! There are 10 lesson topics, one a week, and ten homework assignments. By the end of the ten weeks, you are set. Go out and proclaim, “I am a copywriter!” It’s like I’m in a life preserver being pulled behind a yacht and I want on that yacht! That’s the goal, the yacht or in my case living the life my hubby and I are dreaming of – full-time RVing! (And, no, I’m not kidding!)

So I signed up right before Christmas, sales you know. “Never again will we offer prices this low!” I signed up for everything they told me too, paid my fees and listened to the first lesson. All good, I get it, we are not sales people we are problem solvers… what? Well, to the best of my knowledge a copywriter is a salesperson who sells ‘goods’ through writing – but not according to lesson one. Ok, let’s move on.

The first assignment, read the most successful sales letter ever written ten times. This a 3 page typed letter about why you should choose American Express as your credit card. Now, hand write it ten times. (There are two other lengthy letters waiting for you to read and re-write 10 times.) TEN TIMES! That is three pages per letter, double that because you are handwriting it and you’ll have handwritten 180 pages. In school, when we got in trouble we had to copy dictionary pages… I don’t think I ever had to copy more than five. So I guess this must be for people who do not know proper sentence structure…??? Does anyone anymore?

I did it, kinda, but I rebelled and wrote in cursive. Schools no longer teach cursive writing. Take that! Well, it took me almost all of January. I really do not remember much about the ‘sales’ letters except I never want to write a sales letter. And what the hell happened to ‘be a problem solver’? I solved that problem by not re-writing the stupid letters more than twice. Lord, my hand!!! Painful. I know sentence structure, I also know bait and switch. I can write a sales letter.

I am not giving up! Besides, I really do like the program! I am just having some growing pains. I want to write content for the person who has a chronic illness and wants to travel. I will finish this course if it kills me! OK. It probably won’t kill me, but it could severely damage my hand if there are more homework assignments like the one I just did… so I signed up for live webinars starting this February for the accelerated courses that I am taking. I will have class every Thursday. I will be accountable! I will finish! I may be a glutton for punishment? They do have the webinars taped so I can watch and re-watch as many times as I need to for a week. (I’m prepped for the fibro flare and fog, it will happen, just a matter of when.)

Onward! I will be a freelance copywriter! Oh! They said I could call myself a copywriter since I am enrolled, should I get a ‘job’ they’ll help me complete it. That is very nice, I do not know who will be hiring a freelance (travel) content copywriter who is not currently traveling, but one never knows? I have, after all, travel experience with fibromyalgia!

Here goes nothing…again. 

 

Version 2~Kim