But I’m so Tired

Today my spouse left me because I’m not fun anymore…

But I’m so tired

I wake up and I’m tired

I sleep 8 hrs and I’m tired

I wake up and I don’t want to get up,

but I’m in so much pain I have no choice

But I’m so tired

I used to be fun

I used to go to art galleries

I used to walk 6 miles

IN ONE DAY!

I used to be fun

But I’m so tired…

I used to clean the house in one fell swoop,

But I’m so tired…

Now I can barely do the dishes.

I used to be fun,

I used to laugh and dance and play

But I’m so tired…

It hurts,

Everything hurts,

And I’m so tired.

I wish I could have her back too.

But I’m so tired.

How do you teach a child to live in pain?

I’ve been trying to write this post for quite a while.

I know how to teach math, science. How to tie your shoes or ride a bike.

But how do I teach my child to live in pain?

It seems like we swirl around in a tornado of medical full of doctor visits, blood test, MRI, Scopes. Then Physical therapy, occupational therapy. While the doctors say try this, try that. Nope not this maybe that?

When the dust settles and you can start to feel the earth beneath your feet again the hammer drops…

“We believe your child’s pain is coming from his nervous system being overactive. Amplified Musculoskeletal Pain Syndrome.”

AMPS goes by other names as well; complex regional pain syndrome(CRPS), juvenile fibromyalgia, diffuse idiopathic pain and localized idiopathic pain.

Basically he feels more pain than average and his system is overactive sending pain signals when there is no physical cause(at least no known cause). They did say that they theorize T’s hypermobility(Ehlers Danlos Syndrome) lead to many micro tears and injuries to his ligaments that it triggered his AMPS.

We sat in the pediatric pain clinic (sad that that is a needed thing) while they explain that the only “treatment” for the condition is intense physical therapy in an effort to “reset” his system. Along with work to help him cope and deal with being in pain.

So how do you teach a child to live in pain?

I don’t want to just deal with it and get by I want him to LIVE and THRIVE.

So we reach into our goody bag of pain relief options.
Want to know more visit my PT post where I talk about it!
Pain Relief goody bag

We try to get activities spread out to help combat fatigue and over extending our energy. Don’t want to deplete those spoons! We gently increase and stretch out the amount that he is active to build up his tolerance.

We have dance parties and about self care.

And in the background Momma keeps reading, learning and pursuing the best care.

I can say it’s truly been a Godsend that we were homeschooling before this. I don’t know how we would have handled all this PLUS the need to be at Public School five days of the week. We are able to snuggle in PJs, with a heating pad and push forward with schooling.

Discrimination or profiling in the medical field?

No one wants to think that they are going to be discriminated against or “profiled” by anyone let alone a DOCTOR but it happens.

About 2 years ago I went into the ER after 9 days of a constant horrible worst headache I have ever had. I mean this was a headache that every movement I made seemed like torture. Even moving my EYES caused immense pain.

After running running the basic blood work and a CT the doctor came in and said..”Well your blood work looks ok, your CT shows a sinus infection but I don’t think that would be causing all your pain. You have ONLY CAME INTO THE ER THREE TIMES THIS YEAR so I think there is something else going on. I want to do a lumbar puncture.”

Now I have multiple chronic illnesses that can bring me into the ER just out of necessity. I have Chrohn’s Disease which can cause bowel obstructions and perforations. Something I can’t tell at home. When I call my Gastrointerologist they tell me I have to go into the ER. Thankfully due to Modern medicine called REMICADE that cost $20,000 per infusion I had been in remission at the time so my ER visits were minimal. But that medication makes me susceptible to infections. Which means MORE ER visits because the infections can spread so fast that I can’t always wait until a doctors office opens up to be seen.

So had a been seen more than THREE times would you have not taken me serious and done that Lumbar Puncture? Which lead to me being diagnosed with the condition Idiopathic Intracranial Hypertension. Which in layman’s terms means I have too much pressure on my brain which can lead to blindness(irreversible and damage to my brain).

Would you have assumed I was only there for DRUGS had I been in the ER more that THREE times in the last year?..(which I hadn’t even asked for during my entire stay in the ER that night). Would you have sent me home without that further testing because of an assumption?

An assumption that being in the ER more than 3 times in a year somehow equates to me faking my symptoms. Yes a “Headache” is a fairly perhaps “overplayed’ rouse used by true drug seekers. Yet I had been there hours and hadn’t even asked for as much as a tylenol nor received anything before you made your comment.

I do believe that doctors have a tough job. They have to make judgement calls not only about the medical facts but also about the people. Misread it and you end up giving a drug seeker their next fix or you miss some other psychological condition. Of course they are human and therefore not perfect but they also carry great responsibility and power. I believe they many times miss the forest for the trees. They see a person in and out of the ER throughout the year but they fail to see and consider the conditions behind it. They see a person covered in tattoos and their mind goes sour.

What’s your Superpower?

My Immune System Attacks itself. 

What’s your Superpower?

 

BUY IT HERE!

I hate physical therapy…sometimes.

And it’s not even mine!

Sitting watching and listening to my child cry out in pain while attempting physical therapy.  Knowing that there isn’t anything you can do to stop it.

I’ve been trying to document and bring awareness through this blog and Instagram but I haven’t been able to bring myself to visually document his PT experience. It’s just to painful.  Enough so that we had to cut the session short by half this week because he was in just too much pain.

So what do you do when your child is in pain and there is no magical medical fix?

I reach into my goody bag of techniques I’ve learn over the years. 

• Number one over the years has been distraction, distraction, distraction.
• Toys, music, games(offline preferred of course).
• Visualization (that wasn’t a big hit today at PT but we shall keep trying!)
• Massage
• Heat, ice

 

 

 

 

 

 

Dealing with uncertainty of undiagnosed chronic illness.

Dealing with a chronic illness is tough enough when you have the certainty of a diagnosis. It still comes with a wide range of daily and long term uncertainty but there is a certain comfort that comes with naming the medical beast. Going to the labyrinth of anxiety and confusion with a still masked beast just amplifies it’s effects.

I have dealt with both a periods of living without a diagnosis for my ailments which is a confusing, isolating and anxiety driven experience. I am now experiencing the situation from the stance of a parent with a chronically ill child.

So what are some tactics for coping with an undiagnosed chronic illness?

• Have faith in yourself. Trust yourself. You may find that you go through several doctors and even several specialists until you find your answer or you may never find your answer. I encourage you to trust yourself. You know your body best. You know when something is wrong and don’t let others including doctors tell you that “it’s all in your head” or you should give up.
  

 

• Trust your body and listen to it. While I am all for pushing one’s limits at times or stretching them a bit to help keep the body active. You need to be mindful of what your body is asking for and what it needs. Rest if you need to. What your body is craving and needing can tell you many things about your health at times as well.
  

• Find a support system. It’s important to try your best not to isolate. To reach out and find a support system that you can reach out to and engage in. Friends, family, church or perhaps a local health support group. Many cities now have chronic pain support groups sponsored by hospitals. Online support groups can be great but they can also contribute to isolation when it’s the only support system one has.
  

• Self care. This is really an important one for both physical and mental health. Taking care of one’s self enables you to then give to others. Make sure you are doing things that help you to recharge and give to your sense of self. Finding a hobby you can engage in, even if it has to be different than what you would do pre-illness is a great idea. Making sure to maintain the sense of self outside the illness is very important in my humble opinion.
  

• Explore alternative and complementary treatments. Massage, acupuncture, swimming(in a warm pool), tens machine, herbs, supplements, chiropractor. When used in conjunction and with the knowledge of doctors can be very helpful for many people when they can be utilized. Cost can be prohibitive for many.
  
  And finally….
  

 

• Don’t give up! Many diseases have a very long average time lapse between onset of symptoms and diagnoses unfortunately so don’t give up. Keep on going and seeking out answers while caring for your health as best as you can in the meantime.

Parenting from a State of Rest.

There is a philosophy in the Charlotte Mason homeschooling world titled “Teaching from a State of Rest.”  It does sound quite like teaching from the couch with a cold one but in reality it means teaching from a MINDstate of rest. One of calmness and without constantly comparing oneself to the “Joneses”.

Perhaps you can see where I’m going with this. Much as parents in the homeschooling world fall prey to comparing themselves to others so do Chronic pain patients. They compare and criticize themselves for not being able to do this or that even though it’s typically out of their control.

Teaching from rest in the Charlotte Mason world typically refers to entering in to God’s rest and trusting him to guide you.

Regardless of if you are religious person or not I believe the same principle can be applied if you only trust that  you are doing the best that you can.

Going back to the principles I have discussed in previous post, you need to be mindful and know what you can and cannot do. I’m all for pushing the boundaries withing reason.  Know that you will pay for pushing and that you will have to work in that recuperation time into your schedule.

Your children won’t remember that they didn’t get to go rock climbing with you like little Johnny down the street. They will remember all the times they did have with you and all the things they did do. How it’s so much better from this side of the fence of calmness and a “state of rest”.

https://www.circeinstitute.org/blog/teaching-state-rest

A Prayer for Courage

I sit and watch my child go through his third trial on yet another NSAID hoping that this one will help. After having watch him cling to me out of prednisone induced anxiety attack. I watch him limp and listen to him cry because of the painful joints and a painful stomach from medication.

I stumbled upon a beautiful book of Prayer poems in a thrift store that has been a great gift of comfort  at times like these;

A Prayer For Courage

Give me courage, Lord, to sail
My boat out from the shore.
I’d rather know the ocean’s gale
And hear the tempest’s roar
Than anchor safely in some bay
Because fear conquered me.
Let craft less daring inland stay —
Be mine the pathless sea.
What though my boat at last go down,
I know my courage shall not drown.

Oh grant me aspiration, Lord.
To seek the mountain’s height;
The lowlands easy joy afford,
But there ’tis soonest night,
My eyes shall watch the sun-light peak
As over rock and stone
I fall with ebbing strength, yet seek
The upward ways alone.
Though not far from the base I stop
My soul shall climb on to the top.

Give me a valiant spirit, Lord,
That bows not to defeat;
Though mine be but a broken sword
Face-forward I would meet
The onrush of my armored foes,
Nor beg on bended knee
That they withhold the fatal blows
Which they intend for me.
The victory’s mine if my last breath
Dare bid defiance still to death.
—Joseph Morris

Photo Credit:  Solitary Boat on the Sea, Horacio Cardozo http://www.horacio-cccccardozo.com/

Enthesitis Related Arthritis

Something I had been fearing since the beginning of my journey with Psoriatic Arthritis was that my then toddler son would develop an autoimmune condition.

When he started having joint pain at three my fear went even higher. We talked with his pediatrician and I journaled his pain and symptoms to spot any patterns that would point to something more ominous than “growing pains”.

At seven when he getting even more joint pain and would bend over from the back pain. I insisted on a referral to a pediatric rheumatologist. We found out that he was very hypermobile. Meaning his joints all bend and extend much more than your average person. The doctors believed that this explained his joint pain. We began weekly physical therapy to strengthen his weak muscles.

His hypermobility lead us down the path of geneticists who stated that he was right at the border for meeting the criteria for a genetic condition called Ehlers danlos syndrome type 3.  Which lead us to the Cardiologist to rule out heart conditions(as EDS effects the collagen of the body and can lead to widening of the aorta). We have seen the Gastrointerologist as well as allergist because of stomach pains and chronic hives. We discovered a wheat allergy.

Then two years later we began having more joint pain, more back pain. The gave us the talk.

“Your child may be developing Enthesitis Related Arthritis.”

It’s a form of Juvenile Arthritis, basically juvenile psoriatic arthritis he just doesn’t have any psoriasis…yet.

Son of a ……….

“Do you have any questions?”

No unfortunately I know all the well what it entails so I didn’t have many questions at the time. I did a day or so later.

Here we are 3 weeks later and I have a child that is struggling to walk, who I keep finding on the floor unable to get after having fallen.

Trigeminal Neuralgia

I’m hiding in the bathroom trying to keep from screaming,

as it feel as if the side of my face is being ripped off.

Doubling over silently banging on the door

through the hanging towels.

Teeter tottering have to get it together through the ice pick to the temple.

Leaning over the sink don’t want to lose my contents and sink.

Have to gather myself and carry on.

After all I’m;

Chronic Mommy.

Things you hear when you are chronically ill.

I’ll admit it’s a bit of a cliche article to write but I have to write it. It’s gnawing on me!

Most of the articles you’ll see will focus on the “you don’t look sick” comments which I get….all the time. That’s not what get’s me. People don’t typically know better and they mean well.

What gets me comes from my doctors….

“You’re to young to have all these problems.”

That doesn’t make me feel any better. Doesn’t comfort me or provide me any information.

I’m not sure what it’s supposed to do. It’s not even that I’ve only heard it from one solitary doctor; it’s been several! Though hearing in several times from one doctor sorta pushed me over the edge and led me to believe he didn’t even remember our previous conversations. lol

I’m even unsure of the correct response for this from me…

“Perhaps someone should inform my body?”
” I guess my diseases forgot to ID me.”
I usually end up giving an awkward smile until they change the subject and move on. Perhaps I’m to kind to risk embarrassing them. What exactly do they want me to respond with?

I wonder at their motivation behind the comment. I suspect it’s their way of expressing sympathy. It’s an odd way of going about it.

As if I was older my diseases would make more sense. 
 

In case you are curious of my personal constellation of diseases that would produce such as reaction from my doctors; Psoriatic Arthritis, Crohns Disease, Endometriosis, Trigeminal Neuralgia, Idiopathic Intracranial Hypertension, Degenerative Disc Disease, GERD, Epilepsy, Fibromyalgia.

 

What’s the strangest thing your doctor has said to you?

 

Chronic Illness and Organization

Organization…. A bit of a dirty word in my life. I’ve never been great at it. I’ve always seemed to lack that magically organizational gene others seem to possess.

Or perhaps as I’m learning it’s more a habit.

My newest discovery is Bullet journals. There are many all so fancy one’s floating out there in the world wide web. Such as the original Bullet Journal of course.

I’ve adapted and made my own personal little bullet journal with a main one page all in one stop shop for tracking my chronic illness aspects, to do list, appointments, as well notes about T(my son). Which typically include his medical issues as he also has chronic issues.

It has helped me to not only track my pain levels and other a various issues but to keep on top of To do items. Being all on one page it helps to limit the chance of me missing something. My medications and conditions mean that I’m more apt to do so and this helps to counter that. If I remember to go and chart my pain I also remember to go and look at my to do list and vice versa.

I also out all appointments into my phone so that I have another reminder as well with alarms. I will also put in other important things in if I really can’t forget. Really need to call that doctor tomorrow and must not forget? I put it in as an event and put an alarm on it so that I won’t forget to call.

I kept forgetting to take my medications especially when they were all in their individual bottles from the pharmacy so I bought a more expensive bill box system online called an anabox. I spent a pretty penny in my mind on that thing. Something that took me a while to do because I’m so stubborn. I didn’t want to give in. I think some part of me believed that giving in to that meant giving in on something else. I realize now it was part of accepting my diseases and accepting my life and the things I cannot change and it’s made me much happier. So now I can take each individual day with me(as I take medications four times a day) without having to take the whole thing) and I don’t have to worry about it accidentally popping open and spilling.

I try to do as much as I can to streamline my process and keep everything as visual as possible. I already am prone to forgetfulness and the fatigue and medications just amplify that in me. I am sure I cannot be the only one. My journal also serves as a log for my illness that I can share with my doctors when needed.

Are there any tricks or systems that you use to aid in organization?