myfibrostory

Story of a Fibro Warrior…

Sometimes You Just Need a Fork…. December 19, 2014

Filed under: chronic pain — jenfibrofighter @ 6:28 pm
Tags: , , ,

Spoons

What is the obsession with chronic pain patients and spoons anyway?

Well…I can tell you…

Thank you to Christine Miserandino for finding a way to explain chronic pain conditions to others.

Here is just a little excerpt about the spoon theory taken from http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

(P.S. I full recommend reading the entire article to get the full impact of her story.)

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

 

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

 

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

 

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

 

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

 

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

 

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.”

 

While I think this theory is wonderful in its ability to bring an understanding to how chronic pain patients have to manage their days…and their lives for that matter, I have a feeling a lot of chronic pain patients are like me, and waste their spoons pretty quickly and then try not to spend the rest of the evening with guilt or regret.

I look at it this way…As long as I waste the spoon on something good I can forgive myself…

But I definitely need to stop wasting them on things like trying to be the perfect mother, trying to keep the house spotless every day, worrying about work when I’m not there, blah blah blah…all those things that don’t require my energy.

And when it comes down to it…

Sometimes you just need a fork…   Fork

Maybe the cost of a fork is three spoons.

Have you ever tried to eat a salad with a spoon?  I’m sure it would end with a lap full of lettuce and dressing stains.

Have you ever tried to keep up with a 10 month old while trying to conserve energy at the same time?

Would you ever try to get someone’s attention by poking them with a spoon?

I bet a fork would be way more effective to poke a Doctor who isn’t paying attention to your symptoms or is leading you in the wrong direction.

Sometimes you just need a knife…Knife

Maybe the cost of a knife is 5 spoons…

You can’t cut a steak with a spoon and let’s face it, steak is one of the most delicious, wonderful foods ever!

Spending the holidays traveling to see family and spend time with loved-ones is wonderful too…even if it costs me days-worth of spoons.

Have you ever tried to cut something with a spoon?

Have you ever tried to work out after, or during, a bad flare-where it feels like your body is being cut my knives?  It hurts, but you know you have to do it or you may not regenerate your spoons for the rest of the week.

*I don’t recommend poking your Doctor with a knife…reserve that only for a knife.  While Doctor’s are frustrating, having the wrong one isn’t worth the trade in for the cost of a knife.- and the fork will probably get you in a lot less trouble**

I think that chronic pain patients learn to appreciate the little things you do when you are ONLY given a spoon…

A big bowl of ice cream.

Ice cream

Help opening a jar when arthritis is too bad.

Jar-Spoon

Watching my son taste a flavor for the first time in his life on his little spoon.

baby spoon

Stirring the perfect flavor of creamer into the first cup of coffee for the day.

 coffee

It’s a constant trade in…and everyday has a different table setting.

Table Setting

 

Needles, Needles, Needles… December 9, 2014

Filed under: Uncategorized — jenfibrofighter @ 5:43 pm

Working in a physical therapy clinic has educated me about chronic pain more than I imagined.  I’ve learned about, and been able to try treatments I never knew even existed for chronic pain.  Most recent of these treatments?

Functional dry needling…

Here is a brief description of the process and purpose of this treatment, from www.kinetacore.com

Dry Needling is a general term for a therapeutic treatment procedure that involves multiple advances of a filament needle into the muscle in the area of the body which produces pain and typically contains a trigger point. There is no injectable solution and typically the needle that is used is very thin. Most patients will not even feel the needle penetrate the skin, but once it advances into the muscle, the discomfort can vary from patient to patient. Usually a healthy muscle feels very little discomfort upon insertion of the needle; however, if the muscle is sensitive and shortened or contains active trigger points, the subject may feel a sensation much like a muscle cramp, often referred to as a ‘twitch response”.

The twitch response also has a biochemical characteristic to it which likely affects the reaction of the muscle, symptoms and response of the tissue. Along with the health of the tissue, the expertise of the practitioner can also attribute to the variation of discomfort and outcome. The patient may only feel the cramping sensation locally or they may feel a referral of pain or similar symptoms for which they are seeking treatment. A reproduction of their pain can be a helpful diagnostic indicator of the cause of the symptoms. Patients soon learn to recognize and even welcome this sensation, as it results in deactivating the trigger point, reducing pain and restoring normal length and function of the involved muscle. Typically, positive results are apparent within 2-4 treatment sessions but can vary depending on the cause and duration of the symptoms, overall health of the patient, and experience level of the practitioner.

Dry needling is an effective treatment for acute and chronic pain, rehabilitation from injury, and even pain and injury prevention, with very few side effects. This technique is unequaled in finding and eliminating neuromuscular dysfunction that leads to pain and functional deficits.”

Sound scary?  I agree!

Before I would even attempt this, I watched one of my co-workers go through the treatment.  I knew since I would more than likely be getting it done on my back or neck and wouldn’t be able to see, I wanted to see what was actually going on first to try to calm my nerves.  In hindsight, I should have just gone into it blind.

My co-worker was getting a place on his arm treated.  Basically it looks like this…

Gloves on…

Alcohol on…

Needle in…

Dig around with needle…

Dig around…

Watch my co-worker wiggle and flinch…

Electrical stimulation added to the needle to make it vibrate while it’s still in…

Co-worker says it feels good…

Needle out…

Done.

Of course, there is WAY more expertise, detail and navigation of the human anatomy that went into the treatment, but as far as what you can “see” that was pretty much it.

I was still nervous but did it anyway.  The PT started by giving me a background in dry needling and made sure to mention that, although the needles are the same as acupuncture, the treatment, evaluation and goals are all very different from acupuncture treatment.   She also stated I may be sore, like a deep ache, after the treatment.  I was only sore for an hour or so, and luckily had no soreness the next day.

I had built what I thought it would feel like in my head to the point where I actually got nervous enough for the PT to tell me to stop and breathe.

All in all…it really wasn’t that bad.  I got my shoulders and neck done (my trigger points).  Looking back on it, the intense ache I got during the treatment didn’t feel any worse than a flare, like during a strong weather change…and it only lasted a second or two.

Now to the most important part….

Did it work?

I was pain free in the treatment spots for almost one full week after only one treatment.  These are the spots where I have daily, nagging, never goes away, pain.  I just felt…normal.  I was able to turn my head in the car easier and didn’t feel my neck “stick” while reaching like I usually do.

I was extremely happy with the results and YES, I will do it again.

Our next attempt?  My sore hips from the psoriatic.

Next needle on my agenda?  Getting rid of the methotrexate!  My Rheumatologist Ok’d the switch from Methotrexate to a biologic because of the side effects I was having.  I am SO excited to have my Sunday’s back…and some of my hair back for that matter.

New needle to try?  Humira injections.

After weeks of working through to get my co-pay lowered ($8,000 a month without insurance, $100 copay with, and now $5 with copay assistance, thank goodness) the injection pens are sitting in my fridge waiting to be used.

Because of the potential side effects (nothing like methotrexate from what I’ve heard) I am choosing to wait until after the holidays to start the injections.  I don’t want to miss out on any of the holiday events, or have a possible bad reaction, etc.

While this is great, it’s also a double edged sword.  I’m swollen, sore and crack and pop every time I move.  Once the methotrexate started to leave my system, this all came pouring back unfortunately.

I have high hopes for Humira, as it seems to have helped quite a few psoriatic arthritis patients based off the reviews and the posts in my support group.

As usual…

Only time will tell.

 

From a Mother to a Daughter-Guest Blog November 19, 2014

Now that you are a mother, (and a very good one!!), Jen, you are acutely aware of the powerful protective “mother bear and cub” impulse you now experience.

Anything that would harm your child, or create pain for your child, is met inside you with a passion to make it go away, fix it, or kick it to the curb!

That feeling never goes away!

This terrible diagnosis has been a undefeatable foe, and I hate it!

Now you have an additional adversary that I have no control over, Psoriatic Arthritis! And, OMG the medications, and their side effects are absolutely terrifying!

You have met the enemy head on! You fight it; being as fit as your pain allows, through therapy, (when the pain needs an extra push to subside), by avoiding excessive medicating, and by being aware of your body’s signals that tells you when rest is an absolute necessity.

My biggest fear – that you will grow too tired to fight.

So I pray. I pray for your strength. I pray for your endurance. But most of all, I pray for a cure!

So, all I can do to help is listen when you need me to.  However, I suspect that you internalize a lot of your pain and feelings, for fear that you talk about it too much.

Thank God for Trent, (God bless him), who gets to hear it all!

So, daughter, that’s how I feel. You are loved even more than Love you to the moon can ever describe!

Love,

Mom

 

The First Step Is Admitting You Have a Problem… November 18, 2014

 

Thumb

 

On November 12th I decided to take a two week vacation from Facebook after reading the article, “7 Ways Facebook is Bad for Your Mental Health,” on Psychology Today, found here:

http://www.psychologytoday.com/blog/sex-murder-and-the-meaning-life/201404/7-ways-facebook-is-bad-your-mental-health

Depression and anxiety are some of the most common symptoms that accompany chronic pain illnesses.  So, by spending time on Facebook, was I making it worse?  Was I on a slippery slope where I was on Facebook, Facebook was causing me to be stressed or depressed and then, in turn, making my pain worse?

Well, it’s November 17th.  I obviously didn’t make it the full two weeks because, well, while it was beneficial for MULTIPLE reasons, it was hurting me (no pun intended) in other ways.

The 7 “reasons” found in the article and how I connected to them….

  1. It can make you feel like your life isn’t as cool as everyone else’s. Social psychologist Leon Festinger observed that people are naturally inclined to engage in social comparison. To answer a question like “Am I doing better or worse than average?” you need to check out other people like you. Facebook is a quick, effortless way to engage in social comparison, but with even one glance through your News Feed you might see pictures of your friends enjoying a mouth-watering dinner at Chez Panisse, or perhaps winning the Professor of the Year award at Yale University. Indeed, a study by Chou and Edge (2012) found that chronic Facebook users tend to think that other people lead happier lives than their own, leading them to feel that life is less fair.

-Well, duh, of COURSE my life isn’t going to feel as “cool” as everyone else’s, right? I have chronic pain…I’m either limited or have to adjust my life around that pain, which in turn can make me feel more like an 80 year old lady—not so cool.  I can’t ride rollercoasters, or stay up late drinking with my girlfriends.  I can’t go on vacation or travel at the drop of a hat. I don’t like being the “Why me?” person and Facebook was only making that worse.

  1. It can lead you to envy your friends’ successes. Did cousin Annabelle announce a nice new promotion last month, a new car last week, and send a photo from her cruise vacation to Aruba this morning?  Not only can Facebook make you feel like you aren’t sharing in your friends’ happiness, but it can also make you feel envious of their happy lives. Buxmann and Krasnova (2013) have found that seeing others’ highlights on your News Feed can make you envious of friends’ travels, successes, and appearances. Additional findings suggest that the negative psychological impact of passively following others on Facebook is driven by the feelings of envy that stem from passively skimming your News Feed.

You better bet Chronic pain sufferers are envious of a pain free, or easier lives.  I was jealous of people who didn’t have to work when working full time is so exhausting for me on top of raising Baby A and dealing with chronic pain. I was envious watching people who “seem” to have it so easy.  I found myself drifting off into daydreams of what I “couldn’t” or “didn’t” have with my limitations…not good.

  1. It can lead to a sense of false consensus. Sit next to a friend while you each search for the same thing on Google. Eli Pariser, author of The Filter Bubble (2012), can promise you won’t see the same search results. Not only have your Internet searches grown more personalized, so have social networking sites. Facebook’s sorting function places posts higher in your News Feed if they’re from like-minded friends—which may distort your view of the world (Constine, 2012). This can lead you to believe that your favorite political candidate is a shoe-in for the upcoming election, even though many of your friends are saying otherwise…you just won’t hear them.

This is SO very true when researching chronic illnesses.  “This” treatment is “Obviously” the best.  “Your doctor is wrong”, so on and so forth.  I found myself in a very un-supportive, support group on Facebook.  When you’re lost in a new diagnosis and illness, it’s hard not to think you may be doing the wrong things to manage your illness, or to listen to what other patients have to say…maybe they have the “answer” to all of this (someone has to, right?).

  1. It can keep you in touch with people you’d really rather forget.  Want to know what your ex is up to? You can…and that might not be a good thing.Facebook stalking has made it harder to let go of past relationships. Does she seem as miserable as I am? Is that ambiguous post directed at me? Has she started dating that guy from trivia night? These questions might better remain unanswered; indeed, Marshall (2012) found that Facebook users who reported visiting their former partner’s page experienced disrupted post-breakup emotional recovery and higher levels of distress. Even if you still run into your ex in daily life, the effects of online surveillance were significantly worse than those of offline contact.

Yep.

  1. It can make you jealous of your current partner.  Facebook stalking doesn’t only apply to your ex.  Who is this Stacy LaRue, and why is she constantly “liking” my husband’s Facebook posts?   Krafsky and Krafsky, authors of Facebook and Your Marriage(2010), address many common concerns in relationships that stem from Facebook use. “Checking up on” your partner’s page can often lead to jealousy and even unwarranted suspicion, particularly if your husband’s exes frequently come into the picture. Krafsky and Krafsky recommend talking with your partner about behaviors that you both consider safe and trustworthy on Facebook, and setting boundaries where you don’t feel comfortable.

Not really a concern for me, but sometimes I worry that he is also envious of people with an “easier” life, or “easier” wife (no comments from the peanut gallery).

  1. It can reveal information you might not want to share with potential employers.  Do you really want a potential employer to know about how drunk you got at last week’s kegger…or the interesting wild night that followed with the girl in the blue bikini?  Peluchette and Karl (2010) found that 40% of users mention alcohol use on their Facebook page, and 20% mention sexual activities. We often think these posts are safe from prying eyes, but that might not be the case. While 89% of jobseekers use social networking sites, 37% of potential employers do, as well—and are actively looking into their potential hires (Smith, 2013). If you’re on the job market, make sure to check your privacy settings and restrict any risqué content to “Friends Only”, if you don’t wish to delete it entirely.

I worried about this a lot when I was teaching Zumba.  I worried that my employers wouldn’t think I was capable, or students would think I wouldn’t be very hard or I wouldn’t be any fun. 

  1. It can become addictive.  Think society’s most common addictive substances are coffee, cigarettes, and alcohol? Think again. The DSM-V (Diagnostic and Statistical Manual) includes a new diagnosis that has stirred controversy: a series of items gauging Internet Addiction. Since then, Facebook addiction has gathered attention from both popular media and empirical journals, leading to the creation of a Facebook addiction scale (Paddock, 2012; see below for items). To explore the seriousness of this addiction, Hofmann and colleagues (2012) randomly texted participants over the course of a week to ask what they most desired at that particular moment. They found that among their participants, social media use was craved even more than tobacco and alcohol.

I was fully, 100% addicted. Yep. 

 

So Facebook was OBVIOUSLY bad for me in a lot of ways, but at the same time, I missed the things that WERE good for me.

I missed seeing pictures of my family.  I missed sharing Baby A with them from so far away.  I missed having an “escape from reality” after a few days break when I realized that Facebook was FAR from reality. 

So let’s look at this again….

  1. It can make you feel like your life isn’t as cool as everyone else’s. 

My life only needs to be as “cool” as I want it to be, based off what I can do, have the energy, and WANT to do because I WANT to, not because it’s necessarily “cool” for everyone. Plus, some 80+ year old women ARE cool…like Betty White…If I’m half as cool as her now, at 33, then I consider myself pretty damn awesome.

Betty white

  1. It can lead you to envy your friends’ successes.

I am successful.  I shouldn’t be jealous of people who don’t have to work or those who seem to have things come easily.  I should be proud I still CAN do all of this for the time being.  I’ve got a lot to handle-People should be envious of my strength, right? ;-)

  1. It can lead to a sense of false consensus. 

I have deleted all of my “support” groups but one, who I truly feel are filed with people who are kind, genuine and still have the pursuit of being active and lead a full life. I am the only one who will find the best treatment for me.

  1. It can keep you in touch with people you’d really rather forget.  

“Are you sure you which to “Un-friend” this person”…Why yes, Facebook, I’m sure.  My friend list is now very small.  I like that.

  1. It can make you jealous of your current partner.  

I’m not sure my fear of my hubby having an “easier” wife will ever go away, but spending my time sulking over Facebook envies obviously isn’t me being the supportive wife I can be.

  1. It can reveal information you might not want to share with potential employers.  

I’ve got the best co-workers and am blessed to work in a PT clinic where they have sympathy for pain.

  1. It can become addictive.  

No question, I’m cutting back.  There are lots of reason I became very addicted (especially last year during a really rough time) and I have to forgive myself for that and understand at THAT point in my life Facebook actually helped me get through by staying in touch with people, but now I have to continue to realize I don’t need to crutch anymore.

 

I worry that I’m not the only chronic pain patient who has allowed social media to become a crutch to stay inside and stay away from actual human interaction.  I worry that it is causing more isolation and less activity for those who need it the most.  I can only hope that maybe someone else with chronic pain will evaluate their use of social media too.  Is it helping, or “hurting?”

 

 

Sorry You Asked? November 7, 2014

Filed under: chronic pain,Methotrexate,psoriatic arthritis,Uncategorized — jenfibrofighter @ 5:33 pm

Methotrexate: A disease-modifying antirheumatic drug (DMARD) that is thought to slow the progression of psoriatic arthritis and save the joints and other tissues from permanent damage.

 

 

dog

 

AKA:  The bane of my existence.

Many people have been asking me how my injections are going…

Well….

My swelling in “some” of my joints has gone down.  My toes look normal again, although I’m still struggling with my fingers, feet and knees.  The stomach upset wasn’t nearly as bad as I had anticipated it would be.  I have a few days of upset stomach, but nothing unbearable.

The fatigue on other hand?  Killer.  I feel like I’ve run a marathon just getting out of bed.  Sunday is usually spent napping and Monday mornings are usually filled with pumping myself full of caffeine to make it through my work day.  It sucks.  I feel like it takes a day away from my son and my family.  I lose a day each week and its incredibly frustrating.  We cram most of our plans in on Saturday to allow me a day to rest.  I know if I try to push through and not nap and rest the rest of my week will be spent recovering.  It’s an awful balancing act right now.   I hate the time I’m losing.

And speaking of losing…

I’ve also started to lose quite a bit of my hair.  YES!  I AM taking the folic acid, biotin, and other vitamins suggested to help with the side effects….It’s still falling out.  Unfortunately, I didn’t have much to spare from the beginning and I worry I’m going to end up with bald spots.

So why am I taking it?  Because the more I learn about psoriatic the more I discover if you don’t treat symptoms early, there really isn’t much you can do to avoid permanent damage.

As I researched methotrexate further, I found out it is a chemotherapy drug to treat cancers such as breast, head and neck, lung, stomach, and esophagus cancers. Acute lymphoblastic leukemia (ALL), sarcomas, non-Hodgkin’s lymphoma (NHL), gestational trophoblastic cancer, and mycosis (www.chemocare.com)-Although arthritis patients receive MUCH lower dose.

 

*I would like to give the up-most respect to cancer patients using this drug.  I can only imagine what a higher dose may do if my small dose makes me feel so wiped out! *

 

The most frustrating part….

 

It could be 4-6 months before I know if it’s working for me.  Only time will tell, and anyone who knows me can tell you I’m not a very patient person.  It may not even be the right drug for me and all of this would have been for nothing.

 elbow

Also…my psoriasis is on fire this week which is rubbing salt in the wound a little bit.  A mixture of freezing weather and stress are making my elbows very colorful.

 

Right now I have to make sure to thank my husband for taking over on Sundays and understanding that we have to take that day “off” from everything to get by.  Hopefully it won’t always be like this as time goes on-or as my body adjusts…here’s to hoping anyway.

 

 

 

 

 

 

 

So Damn Lucky… October 22, 2014

I had to take a step back this week after getting extremely frustrated people were not understanding what I was going through as the weather changed, I flared, I was swollen in weird places, I was tired, I was grumpy and I just wanted someone to know exactly what I was going through.  I’m beyond frustrated to start over with a new diagnosis.  I don’t want to learn how to manage all over again.  I don’t want to re-learn how to explain it to people all over again. I just don’t want to start from the beginning…all over again.

But I have to…

Sometimes I think the pain and exhaustion of my chronic illness is so strong it should read across my forehead.  I had to come to the realization, once again, that beyond some visible swelling or skin issues, my conditions are invisible.

If I tell someone I’m hurting, they don’t know what that entails.  I wanted to visually put into perspective what is going on and hope that can help to clarify a little of what I’m learning to go through.

There is a typical body “graph” at doctor or physical therapy offices that want you to “show” them where you’re hurting.  Usually the patient circles an ankle, or maybe a spot on their back, or maybe both knees…

Welcome to the “where does it hurt” body graph for me…

On any one day I could hurt in one of these places, ten of the places or I could start the day hurting in one place and it moves to another.  On my very worse days, I could hurt in all of them all at once.

 

 

Here is where I hurt from Fibro…

Fibro2


Here is where I hurt from psoriatic arthritis….

PSA2

Put them together and I look like this….

Combined2

Add headaches, irritable bowel, methotrexate side effects, extreme fatigue and memory loss and I have quickly realized learning this new diagnosis with my fibromyalgia is going to make this one of the most challenging times in my life.  My pain is different, my energy is different, my body is different…oh yeah…and I also have an 8 month old son,a marriage, a full time job and life to lead.

I grieved for the “old me” when I was diagnosed with fibro.

I am grieving once again with the psoriatic.

Acceptance will come, but as I know from before that its going to take some time.  Now is the time for me to lean on family, friends and my stubbornness to get through.

 

 

  • Dave Matthews said at his Radio City show: “This is a song about where you’re about to trip and fall and smash your face but everything slows down to the point where you comprehend you’re gonna get hurt but it’s not enough time to do anything about it. And this song is about how not to forget about counting your blessings.”

“So Damn Lucky”

Everything’s different

My head in the clouds

I hit this corner
With my foot on the gas
I started sliding, I lose it
Everything’s different just like that

Oh my God, wait and see
What will soon become of me?
Frozen heart
Screaming wheels
Does that screaming come from me?
So damn lucky, when went on ahead
You say, you say
I see you later
I heard what you said a few minutes later
I’m sliding
Everything’s different, again

Oh my God, wait and see
What will soon become of me?
This frozen heart
Screaming wheels
But does that screaming come from me?
I’m dizzy from all this spinning
Now I’m thinking that you did all you could
When you said my love
Take it slowly
Ok, is what I said
Oh my God, wait and see
What will soon become of me?
Frozen heart
Screaming wheels
But does that screaming come from me?
Take me back, just before I was spinning
Take me back, just before I got dizzy
Take me back, amazing what a minute can do
Just like you
So, so, so, so, up, around, around, around
Amazing what a minute can do
Around, Around, Around
Ok….

 

Dear Baby A… October 6, 2014

Filed under: Uncategorized — jenfibrofighter @ 5:17 pm
Tags: ,

Dear Baby A,

Years from now if you ever read this blog there are a few things I want you to know. ..

I may go into detail in my blog that my pregnancy with you may have triggered my psoriatic arthritis.  I may mention that being up all night with you while you cut a tooth sent me into a fibro flare.  I may talk about sadness or frustrations I have with being a chronic pain Mommy (or as you call me-Mum Mum).  You may see me down.  You may see me sleep a lot.  You may see me feel pretty bad after Dad gives me my shot.

NONE of this is your fault.

If being pregnant with you caused pain-it is worth every ache and pain I’ve had-and will ever have.  You were the most amazing surprise to me and Daddy (or as you call him “Boof”), please don’t ever have guilt for my chronic illness!

I remember once when I was little MY mommy (your Mimi) got into a car accident.  She was in so much pain.  I felt so bad, my stomach ached for her. I couldn’t stand to see her hurting! I can’t even imagine what you’re going to feel since my pain is every day.   If your stomach starts to hurt for my pain-I promise you can make it SOO much better with just a hug or snuggle with me.  Play with me, sing to me, distract me from the bad so I can remember all the good there is with you.

I promise to try to never make you feel like any of this is your fault.  I promise to play, snuggle, sing, laugh and cry with you as much as I possibly can and I won’t let my chronic illnesses ever come before that time with you.

I promise to continue to educate myself on treatments and management so that I can have the most quality time with you as possible.

I promise to include you in my fight against chronic pain and I fully expect you to be one of my biggest supporters!  I want to teach you and I want you to pass down what you learn from me to help other chronic pain survivors!

I love you so much, don’t ever forget it.  If I’m having a bad day-please re-read this letter-None of this will ever be your fault.

LOVE YOU TO THE MOON AND BACK!

Mom

Aiden and Me

 

 
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