My Life With Medicine – The Chronic Pain Truth

When you’re living with chronic pain, medicine is a part of your life. The year is filled with doctor visits, follow-ups, tests, prescriptions and refills. The medicine helps relieve some of the pain. That sharp pain, the pain that takes your breath away – and not like in the fairy tale books. This is the type of pain that stops you in your tracks and makes you close your eyes in pain and at times brings on those silent tears. The ones that no one other than you knows about. You’re unable speak and find yourself closing your hand in a fist – from the pain. After a few minutes, that intense pain is gone. And you think, “I’ll take my medicine to help me get through the next one.” And I do.

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I take the concoction that the doctor thinks will truly work this time! He say’s, “take these two in the morning, this one for nausea, this one for vertigo and these 2 at night.” I see him on my next visit and tell him, it’s a go! It’s working, the combination that we’re trying is working!

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And because nothing is perfect, nothing comes without a ‘cost,’ I tell him about my side effects. The medicine although helping relieve the pain, discomfort, aches and the daily needle like pain, the side effects take time to accept. All medicine have side effects and that’s the truth. And my medicine, are for the most part, muscle relaxers. If you recall, what I have is all in the nervous system – the brain and spinal cord. These muscle relaxers cause a ‘sedation’ type effect on your body. It brings on fatigue and weakness, which in turn cause me to feel extremely tired.

It’s a feeling of having not had slept in a long time. That sleep that causes you to close your eyes while speaking to someone – oh but you don’t intend to be rude! You just can’t help it! And you sleep and sleep and sleep. Because the sleep is what removes you from the pain and for short periods of time, you’re taken to a place where you are in pain no more.

In turn for taking my prescription medicine …

I feel left out,

Alone and afraid,

Like a bad mom, wife,

Like I can’t keep up with life or my kids.

It’s caused me to …

lose friendships,

give up friendships,

cancel, and

feel frustrated.

Yes, it’s true! You take something on to then give up others. You give up the life you once knew, for the life that’s been handed. The new cards. The new circumstance. The life with chronic pain.

A-

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Note To Self For This New Year – 2020

How incredible that I’ve made it this far?! I want to start the month off by writing a few truths to myself and what version of me I want to be moving forward.

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In living with chronic pain there are always different feelings, one minute I’m tired, the next I’m happy, excited, the next I’m drained and filled with intense physical pain. So, as much as I can’t control nor predict how I’ll be feeling physically, I want to be a little more positive moving forward. It can be draining to feel as if I’m a walking ‘Debby Downer.’ Or am I just imagining that?! Perhaps I am – I tend to be a little dramatic.

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Note to self for this new year – 2020. Be honest with self.

+ Stop feeling sorry for your illness. Things happen, trust in Him that all will be well.

+ Yes. You are sick. Accept it.

+ No one’s judging you for your illness. They just don’t know better.

+ Take your medication, including your vitamins, they’re good for you. Less pain equals less mood swings.

+ Schedule your doctors appointments. It is for your well being. If not for you, for your family.

+ Take charge of your life.

+ Don’t make commitments. You can’t keep them. Not because you don’t want to, but because you can’t predict how you will feel.

+ Your children will admire your strength and determination to keep going – despite it all.

+ Stop wanting people to understand your illness. They don’t. And they won’t. And that’s OK.

+ People don’t understand the energy that it takes for you to be open to ‘doing’ things – accepting visitors etc. It’s OK.

+ Put your energy into those who matter.

+ Be patient. Patience will get you far.

+ Be loving with yourself. Love yourself. Your body will love you for it. The weight gain is minuscule to what really matters. THYROID equals your weight gain. No one is entitled nor deserves to know this. You do. And that’s enough.

+ You’re sick. Accept it. Once you do, you’ll see life differently and only then, will you truly begin to live.

I’m sure there are one or two things that may have slipped my mind. But for now, this is a good start. These truths are not to demean or shame myself, they’re to help me see who I am and who I’d like to be moving forward.

A-

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Unapologetic and Living With Chronic Pain

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It’s been with me for so long that I forget who I was before my Chiari diagnosis. The pain-free, care-free days are behind me. I have enough pain meds too embarrassing to say. There are days I want to go on without them – and feel human.

As time has gone by I’ve realized how much time I’ve spent trying to make others understand the depth of my chronic pain. I can’t change the way people perceive my illness, my diagnosis, my feelings, my physical limitations, nothing! The ‘ole ‘but you don’t look sick’ gets old quick. I know myself, what my day to day looks like, and I, myself know exactly what I have to live with – and that is enough.

There’s are certain feelings of guilt that come with chronic pain. The guilt of not being the mom I want to be, the wife I want to be, the daughter, friend, etc. and not living to peoples expectations of who they want me to be.

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I am not physically able and available and that is nothing I should continue to be ashamed of. I can’t be present in others lives as much as I’d like – or at all. I am physically unable to do many things, and only desire to push myself to my limits for my children, my family – no one else. Others expectations should not affect me, the Instagram worthy pictures of family outings should no longer tug at my heart, yearning those days to return to my own life. This is my perfect life, I am perfectly chronically in pain and will continue to be until my days end. I’m not sorry for others not understanding what I live with. I’m only sorry I’ve spent so much time convincing them my words and behavior are due to the constant struggle of battling with chronic pain while being positive. I will not allow others to cut me with their words. There is no need for excuses, I’m struggling and I don’t owe anyone an explanation for my absence.

Because no one is worth allowing them to break me down.

Happy Saturday.

A-

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Brain Surgery May 9, 2013 – Chiari Malformation

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May 9, 2013 is marked within the deepest part of her soul. 

It’s only brain surgery they said.

8 hours into a place of the unknown, she drifted to a deep sleep. 

You never know who or what may change your life – until it does.

And the 8 hours are up, she awakes to a new life – a life of chronic pain that can only been seen in her face.

It’s an invisible illness they said. 

She struggles to maintain her composure.

How does one live with pain, deep pain, pain that doesn’t discriminate and doesn’t stop to ask you your name.

SHE does, she struggles, she cries, she hurts, she screams, she writes, she draws, she smiles, because when time doesn’t stop, she can’t stop.

And when she asks for help, he says, I can’t take the pain, but I can give you something for the pain.

She continues to scream the silent scream.

Be grateful, be thankful – they say.

But when one has no other choice but to be strong, then strong she is. 

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May is Mental Health Awareness Month and being that our mental health is just as important as your physical health, I encourage you to get screened, get help or ask for help. There are both adults and children going through some type of mental illness – break the stigma, it’s not bad, you’re not crazy and you can get better by getting help.

A-

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“Hang In There”

I suspect you already know that with every chronic illness come a few doctors appointments – or many. I had to see my doctor recently as the pain in my neck doesn’t get any better and the medication was running low, so back I went to see my Neurologist. There is a strange thing that happens but with each MRI comes a new result. In reviewing my last MRI on his monitor I noticed a curve on top of my neck in the shape of a letter ‘C’ you could say. But we simply continued talking and moved on. However, I couldn’t stop thinking about it and asked him about it. He said a curve like that is normal say on an 80 year old, but not on someone my age. The two surgeries I’ve had, the first in 2013 and the other on 2017, both have been entered through the back of my neck, so my neck has taken quite a bit. The result, it’s caused the top part of my spine to collapse – hence the letter ‘C’ shape, the other result, pain, the remedy, more medicine. We will try a new medication to manage the pain and come back to revisit the issue. I thanked him for his time and as I’m leaving he says, “hang in there.”

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Those simple words have taken over my mind. How many times does something unprecedented happened? And you, “hang in there” or you have absolutely no choice but to do just that?! Aren’t we all doing just that for different reasons, for the sake of your own sanity, because you’re going through a break up, a job loss, marriage issues, financial issues, whatever the case maybe, you’re “hanging in there.”

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As anger wanted to creep up inside me, I thought of hope. The word hope. The hope that this will continue to help me gain patience for myself and my body, and hope that I will continue to live life, this new life with much gratitude, the life with physical pain, but life nonetheless.

A-

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Reblog Wednesday: Lies I Tell Myself: IV — chiariconversations

This weeks ‘Reblog Wednesday’ has come at the perfect time, and it’s by none other than Michelle over at Chiari Conversations. She’s a fellow Chiarian and her vulnerability and honesty is like breathing fresh air each time I read her posts. If you have neurological issues, or are a fellow Chiarian yourself, please follow her journey along!

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And I say it comes at the perfect time because I have not been quite myself, the body pains have increased, my left leg and foot have been getting increasingly numb and the vertigo, well, the vertigo is a pain in the rear end! I’m going on 6 years since my brain surgery for my Chiari Malformation and every day feels much like I’m going through a slow death – only I’m still here and my brain is being squished by the minute. The stabbing pain behind my neck doesn’t subside and what seems to be the never ending hospital / doctor visits can make me feel much like an elderly than a young mom.  As Michelle clearly states, a few years ago I really don’t know how I could have handled these constant headaches. It’s not your casual headache, ‘you missed a meal, you are a little stressed’ kind of head ache – no my dearest friend and reader, this is a, run and close the blinds, turn off the lights, turn off the volume to everything, including the neighbors barking dog and let’s hibernate for say, a few weeks – kind of headache! The one where you momentary just wish to be a vampire, because lets face it, I wish the world around me was pitch dark, complete darkness.

If you have Chiari Malformation or not, maybe you are dealing other health issues and can relate …

The feelings of wanting to feel like wanting to enjoy life / social gathering without having the next day or even weeks be filled with even more pain and misery. Yes!

The feeling of not wanting to be told ‘you’re strong’ but know that I’d rather lay in bed in a fetal position because I can’t take the pain. Yes! 

The wanting to go to the store and not have to worry about my left leg – body, being overstimulated and being at risk of falling in public. Yes! 

The wanting to go out to a public place, say, church, etc. and just setting it on mute because the chatter and noise level is too loud for my brain to handle. Yes!

The need to want to be ‘able’ and not ‘unable.’ Yes! 

The feeling of constantly needing help, because lets face it, I can’t do it all – literally. Yes!

The need to want to tell scream people to ‘get.to.the.point’ because conversations overstimulate my brain. Yes! 

The wanting to stop being told, ‘but you look good’ because I know that if I looked like how I felt, I’d scare even my own offspring. Yes! and Yes!

What are some of your new normal’s?

A-

It can be difficult to really KNOW whether the pain is normal or not when dealing with neurological issues. It doesn’t help that pain is personal even in the temporal sense. Five years ago, I WOULD NOT have been able to handle this level of constant headache. I would have thought I was dying. Today, […]

via Lies I Tell Myself: IV — chiariconversations

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Exercising With Chiari 1 Malformation

Exercising With Chiari 1 Malformation

I often refer to my short life time as, pre Chiari life and post Chiari life. The things I used to do and the things that I can no longer do. And I say that I can no longer do, because of the physical limitations I have now since my Chiari + Syringomyelia – a congenital diagnosis. It’s baffling to know how much a diagnosis can be the result of so many life changes. The most simple things can now take so much effort and energy – not to mention can bring on some unwanted physical pain.

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My pre Chiari life, the married life, the stay at home mom life with kids included in particular enjoying lots of the outdoors. My days consisted of going outside daily. I especially loved to run, so I would get the littlest ones in the stroller while the rest peddled beside me in their tiny bicycles. We had a daily schedule that included the outdoors, after breakfast we went outside with the ball and spent sometime breathing in some fresh air and after lunch, right before their nap time, I’d get us all ready so that this mama could get a nice jog. So, simple, so refreshing, something the children really looked forward to.

My life post Chiari includes a lot of doctors appointments – from regularly visiting the neurologist and primary, to regular MRI’s to CT Scans, medications – most on trial run to ‘see’ if they help with the pain, what pain you ask, back pain, neck pain, head pain, anything from vertigo to headaches, imbalance and sensitivity to light from the sun to headlights, just to name a few.  My weight with all this going on has – understandably has been fluctuating and now being at the heaviest. Aside from the obvious and that is the pregnancies I’ve had, Chiari isn’t much help in this area either.

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When it comes to exercising, Chiari can really feel like it’s holding me back. I know what you may think and I’m really trying not to be ‘Negative Nancy’ but, with the physical pain I have, it’s hard to get outdoors. My goal is to lose the weight but not break my back in the process – literally.

Here are some helpful tips I’ve found while researching safe ways to exercising while having Chiari Malformation.

  • First and foremost speak to your doctor. The doctor can provide an exercise program to get you started and give you the OK to begin.
  • If you’ve been through Physical Therapy, do you remember the exercises you would do with your therapist? They test you to know how well you can bend, walk around, balance, reach, check your heart rate while you’re active, all these go hand in hand with the exercising that you should and should not be doing.
  • Choose an exercise based on the symptoms and extent of the malformation.
  • The right exercise can ease the stress on the neck.
  • There are low impact exercises that you can try such as walking, swimming and pilates
  • Walking, be sure you’re wearing comfortable walking shoes.
  • Pilates, strengthens your core, abs, obliques and lower back, it helps keep your body balanced and stable. It keeps the spine stable and safe. This one is recommended by the department of neurology at the hospital where I was operated for Syringomyelia but they also specialize in Chiari Malformation.
  • Chiari Malformation patients have problems with the vertebra and disc in the cervical spine resulting this area to be unstable. So, many exercises including lifting weights could potentially be dangerous.
  • Lifting weights is not recommended as this can put pressure and strain on the neck. Straining can increase CSF pressure and if there’s an obstruction, this can lead to problems. What is CSF? It’s the medical abbreviation for ‘Cerebrospinal Fluid’ which is a watery fluid that is continuously produced and absorbed and that flows in the ventricles within the brain and around the surface of the brain and spinal cord.
  • Find a gym or classes in your area that offer programs for people with disabilities.
  • Speak to your doctor before beginning an exercise regimen and if you’re going to change it or begin a new one. Your doctor will know if your condition will allow for more activity or will recommend you keep your exercise light.
  • And finally, always listen to your body, never overexert yourself and don’t over do it. If you begin to feel weak, dizzy or light headed, stop right away.

If you have Chiari – or know of someone, and are doing an exercise regimen, let me know in the comments, I’d love to know what it is.

Hope you have a great day.

-A

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