Death Must Be Faced

I planned on doing Fibromyalgia Awareness posts all this month, every Wednesday. It was a sound plan. Then my parent’s neighbor died, she was very ill. This was expected but when it happened it was still sad. About two days later… my uncle died. He, too, was very ill. In fact, he was in hospice care, his kidneys were shutting down and he opted not to receive treatment. He passed very quickly after that.

I had been planning to take a week and spend it at our family lake home. It was all planned. My health had been questionable for some time and I was hoping a change of pace would help me over the last hurdle. However, two funerals in one week were not planned.

How was I going to get through these funerals?

Would I get through these funerals?

How was I going to be of any use to my parents, who are elderly, during this week?

Would I be able to follow through or fail again on my plans?

When you have fibromyalgia you don’t get better. You never get better. Fibromyalgia is a chronic syndrome. We say illness or disease but it really is neither. Fibromyalgia is a syndrome because it has many contributing coexisting conditions. These coexisting conditions tend to be progressive, worsening over time. But fibromyalgia itself is not a progressive ‘illness.’ (I am not the ‘syndrome’ word police!) This progression of symptoms is very confusing to those of us with fibromyalgia. For the rest of you, it must seem like a damn soap opera!

[Scene: Betty and Jan are talking about their friend Laurie; camera pans to Betty.]

Betty: Then Laurie said she had Fibromyalgia Syndrome and Chronic Fatigue Syndrome. But now she calls the Chronic Fatigue Syndrome some weird word; mya-lgic- encepha-something?

Jan: Myalgic Encephalomyelitis.

Betty: Which is it!?!? And what does THAT word even mean? I swear she made that up! AND Laurie says she has depression, migraines, restless legs syndrome, and [whispering] bathroom problems … how can one person have that much wrong with them?

Jan: I know! Like, go get it fixed already! 

Betty: At least pick one thing. Jeeze!

[Betty and Jan roll their eyes and sigh, end scene.]

The truth is, WE DO have that much wrong with us and many times much more! Take a peek at this sweet little list of possible coexisting conditions!

So, how did I handle my week at our family lake home? I attended everything that was planned. I rested when I could for as long as I could. I wore my therapy belt and snacked on protein-rich foods. I did my fibro exercises. Basically, I went ‘old school.’ I treated my body just as I had right after I was diagnosed with Fibromyalgia. I was very aware of every ounce of energy I spent and was meticulous with my medication. I called my husband frequently. I continued to check in with my tribe for support and received it with a grateful heart. I made sure I was mindful every day of the beauty around me …

 

I made it!

Live your best life!

img_0749-1~Kim

A Shame Filled Entitlement

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?”

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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.

IMG_0250~Kim

Just point North!

Big changes happening here in my household. Remodeling continues, we have been living in a construction zone for almost 1 year… that would be enough to put me over the edge on a good day. Then there are job changes, insurance changes, late taxes to complete, a house to refinance and so much more!

I am about 8 seconds away from curling up in a ball and just crying. But. If I start, I won’t stop, this I am sure of… If I break right now, I will remain broken. I do not think I’ll rebound and my husband will simply shut down. He does this when I have an ‘episode’, almost as if he loses hope right along with me. No, I can not curl up in a ball and start crying.

As I’m writing this I have stacks of paperwork that I should be doing… but it seems so very overwhelming right now. So, what did I do?

I decorated a wreath for Halloween.

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Now is that a coping skill or what?!?! It took the anxiety away a bit, and a little helper pill assisted with the rest. My point is that I don’t have it together right now. I’m turning in circles and can’t seem to get my compass to point North. I am utterly lost!

I know that I have the power to pick how to react to this situation. I have the power to decide to just start dealing with one issue at a time. I just can’t figure out where to start and am utterly overwhelmed and afraid to start anywhere… compass still spinning.

So, I let today slide… tomorrow is a new day. We get to have days that are overwhelming and dealing with those days and not ending up on the floor in a puddle is a win in my book. I’ll take the win.

I’ll take a better look at that compass tomorrow…

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

The Trinity of the Fibro Life!

There are three things that make up the trinity of life with fibromyalgia;

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  1. Know who you are.
  2. Invest in yourself.
  3. Think before you speak.

 

If you can incorporate these three things into the life you lead. You will master the trinity of the fibro life!

 

Know who you are:

Sounds simple enough but is it? Know your fibromyalgia, know your symptoms, your definitions, your medications, what works and what does not. Know your health team, know the friends and loved ones you can count on. Know who to call in the middle of the night if you are in need. Know your interests and hobbies and do them. Know education is an ongoing process and learn something new, every day. Know your limits and know what is worth pushing those limits for! Know how to be a friend and hold a conversation about anything but fibromyalgia. Know that you have a disease but you are not your disease. Know that you are strong because you know your weakness, and know that your mistakes have made you wise. Know that your flaws make you who you are and you are amazing.

Invest in yourself:

This has nothing to do with your finances. (The only comment about money I can make is, “Try to make good choices.”) When you take time to invest in yourself this is where you learn the difference between “have to” and “get to”. Realize where you are in life, that healthy foods and clean water are available to you at all times. You get to eat and you get to drink clean water. You get to move your body. Walking, getting out in nature, going to a great movie or out to dinner. You get to do these things. You also have a bed, you get to rest. Make sure you are investing in yourself by getting what you need in your life and making you the priority.

 

Think before you speak:

I Know! This is so hard but so necessary. This is an energy life-preserver.

  • T – (Is it) true?
  • H – helpful?
  • I – inspiring?
  • N – necessary?
  • K – kind?

 

Live your best life with Fibromyalgia!

IMG_0250~Kim

We are Threshold People.

 

And the mighty battle call goes out, “I will not be defined by my disease!” Well, surprise! You definitely are. There is a word used to describe people in society whose place or status in society remains static, anonymous, and basically unimportant. This word is “liminality”. (You can thank the anthropologists for this one!) Those who are chronically ill are classified as persons in liminality. Yep, it’s a noun, look it up.

However, before you blow a gasket, here is the fun part, people who are deemed to be in liminality are often seen as a possible threat to any social class when they do not follow the code of conduct expected of them. What is this code of conduct? For the chronically ill, we are supposed to follow expectations placed on us by society! If we are ill, we should look it, dress like it, remain obedient with common health care procedures and show humility! You see, we are seen as being in a ‘threshold’ of sorts, we are not what we once were and society’s expectations of us are luminality. We are in a permanent state of illness. We are threshold people.

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But we are a threat… we have invisible illnesses. That makes us very hard to spot. That makes us very hard to classify as one day we are productive and the following we may not be due to our disease. We are limited by our disease, this is true. But always remember, we did not ask for this and we are finding amazing ways to live within those confines! We are not liminality. We are not static, we are searching for answers, knowledge, and cures. We are not anonymous … Invisible Illness Awareness month is September, let our voices be heard! We are not unimportant! We matter! We matter to our loved ones, friends, acquaintances, social networks, WE MATTER. We may indeed be standing on a threshold, but we are stepping through it – to a life lived well with our illness … we matter.

Remember to make your voice heard this month, September is Invisible Illness Awareness month! Be a threat to luminality!!!

IMG_0250~Kim

Hemoglobin and Ferritin … What?




 

The range of normal hemoglobin levels is; 12-16.

 

The range of normal ferritin levels is; 15-205.

 




 

Hemoglobin and iron are proteins in the body. Hemoglobin is in your red blood cells and carries oxygen to your body’s organs. If your hemoglobin is low, this means you are anemic. Ferritin is a protein produced by the body that contains iron. If your ferritin is low, you have an iron deficiency.

 

In October of 2015, I was admitted to the hospital directly after a trip to the clinic where my labs were drawn. My ferritin level (ferritin is the protein that carries iron in your body) was at a one. The normal range for a healthy ferritin level is 15-205. I had just gotten home from my appointment when my doctor called me and said, “You go straight to admitting at the hospital, I reserved a bed for you, your ferritin is dangerously low.” I was confused, could low iron be so harmful I’d have to be admitted? She just said, “Go, go now.” I was admitted immediately given a blood transfusion and three vials of iron, I remained in the hospital for three days.

 

The hospital doctor told me I was close to having a massive heart attack. What? No way! My body was not producing enough ferritin. I knew my fibromyalgia symptoms were flaring, I was beyond exhausted! I couldn’t think straight, I couldn’t walk to the bathroom and back to the couch without having to take a nap. I felt like I was always walking through sand with ankle weights on. Was this all due to low iron? Yes. This time the flare I was having was due to low iron.

 

Here is the scariest part of it all, testing my ferritin level was a fluke. I was in for a regular medical checkup. My doctor noticed I look really pale, but the giveaway was my gums, she looked at my gums and said to her nurse,  “I want to know what her iron level is.” I balked because I had just had my blood panels done … but I learned your iron levels are not regularly tested, she explained that the test had to be ordered separately.

 

I knew I was anemic, my hemoglobin would sometimes reach a ten but usually stayed around an eight. I never knew about ferritin, even what it was or did. I do now! Low ferritin is not traditionally associated with fibromyalgia. Neither is anemia. But low levels of hemoglobin and/or ferritin for a person who has fibromyalgia can cause a severe flare. You will not get over a flare until you raise those levels.

 

You must learn to eat foods rich in iron and cook in cast iron pans. I do both. I also give myself B12 injections once a month and use an iron supplement. Sometimes this is still not enough, so I go in for an iron infusion. I still struggle with keeping my numbers up. I sometimes suffer severe repercussions from the iron infusion, so I need to fully rest for a few days after, this prevents the side effects I can experience. I am still learning how to handle this, but I want to leave you with a word of caution, please ask specifically to have your ferritin (iron level) tested. It is a simple blood test. It is NEVER part of a blood workup and must be explicitly ordered by your doctor.

Ask to have your ferritin level checked!

~Kim

Welcome to Fibro for a Day!

Many people have experienced being tired, exhausted even. But chronic fatigue is more than being tired. It is waking up after a full night of sleep and feeling like you never slept at all. There is no escape, no quick fix, you are in a fatigued state, always. Often you may not be able to sleep a full night through. Sleep disturbances are a big part of Fibromyalgia Syndrome.

You get crowned with both, fibro and fatigue!

You go for the coffee and have cup after cup until you become thoroughly agitated. Then you probably will go into a full-blown panic attack. You will shake, sweat and cry and find it very hard to breathe. You are confident you will die. I will choose to feel the awful fatigue of fibromyalgia over having a horrific panic attack any day.

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Then there is the daily pain. It is either through the roof (you’d be having a fibro flare which is an increase in pain and fatigue) or pain gnawing at your very core and just – will – not – stop. What does it feel like to have fibromyalgia pain?

 

 

-Ever ran track? It feels like the second day after the first practice of the season.

-Ever played basketball? It feels like the second day after the first practice of the season.

-Ever had the flu and been in bed an entire day, getting up only to throw-up? Your body aches!  It feels like the flu.

Then we get ready for those fibro fog days, this is when you experience a literal dysfunction in your brain. You cannot connect the dots. We that have experienced this have learned our tricks, but we still look and sound drunk to others … that can’t be helped. We try to stay isolated, and we depend on our lists that tell us what to do, where things go and in what order we complete a task. We use notebooks, journals, post-it notes, and they become our memory on how to make it through one single day or for as many days as the fog lasts. We can’t remember words. Completing sentences and regular everyday tasks; like showering and getting dressed, is often confusing and cannot be accomplished without notes.

I will leave you with some good news about fibromyalgia. If you don’t have it … this day is over now, and you can go back to your life. My days with fibromyalgia will continue until a cure is found.

IMG_0299~Kim