Tuesday, April 18, 2017

How to speak to your doctor in 5 steps.


Going to the doctor for someone with chronic illness is like going to the grocery store for a normal person, it is a monthly trip or sometimes even a weekly trip, to have a check-up and renew your prescription, the first times you feel relieved to see the doctor, to know more about what is happening in your own body and get to know your illness, but when it becomes a habit, you feel stressed when that time of the month arrives and it is even stressful when your doctor doesn't get you and it is usually the case when you have an invisible or a not well known illness.
With time and experience, we know our our bodies by heart and we know exactly when something goes wrong even when sometimes doctors cannot find what it is in early stages. What we need is support, for our doctors to believe us and when we have new symptoms to explain to us where it comes from and how to ease our pain, that we are heard and that we matter.
Doctors are used to see a lot of patients and all patients are different, so they don't make a difference, they act with us all the same way, they don't get afraid or get involved, they don't get attached and sometimes it even feels like we are just a case, "a patient", nothing more and it is very important for me as "a patient" to feel like a person, like my pain means something and that everything that needs to be done for helping me will be done. Here is how to speak to your doctor in 5 steps.

Step 1:
Nobody knows what you feel better than you, so before your appointment, try to write down or just remember exactly where your pain is, what you feel and where you feel it and tell your doctor.
Step 2:
Sometimes, when your are used to pain your pain scale isn't the same as your doctor's so try to explain exactly how much pain you feel
Step 3:
Listen to your doctor, but also give them your opinion, you and only you know what works for you.
Step 4:
Ask as much questions as you want, it is your right to know what is happeing inside your own body.
Step 5:
Finally, if you are not satisfied or don't feel comfortable with your doctor, first tell them maybe they will make more efforts or just ask for a change, the aim of going to the doctor is to feel better nor worse..physically and emotionally.

Tuesday, April 11, 2017

My chronic illness story.

My name is Meriem, I am 26 and I have been diagnosed for 6 years now, I have Sjogren's syndrome and it is a systemic autoimmune disease that affects the entire body, along with symptoms of extensive dryness, joint pain and other serious complications including profound fatigue, chronic pain, major organ involvement, neuropathies and lymphomas. 
As for me, I first started having the first symptoms about 8 years ago, I was a student at university then and thought all that fatigue was due to my long days of studies, it was only when I started to have red, hot and swollen knees every evening, I decided to go to the doctor. They had all the blood tests done, X-rays etc and since I was young they directly thought it was Acute Articular Rheumatism, they gave me some injections to do. I went to do the first one that was supposed to cover 15 days and make me feel better, everything went well, but a few days later, I woke up in the middle of the night sweating and not feeling very good, I went to call my mom and then everything went black, I had a syncope and an anaphylactic shock, when I finally recovered conciousness all my body rashed and it was like this for a whole month.
After this episode, I became allergic to almost all anti-inflammatories and antibiotics, my symptoms continued to worsen and the pain and redness migrated to all my joints, added to that I started to have stomachache and fatigue all the time, my blood tests tested positive for an immune disease but without specificities. For the first time, doctors took me seriously, because before that since they didn't know what it was, they didn't take me seriously especially since the illness was invisible, when you see me, you cannot guess or even believe I have one. My family were sad because before we had proof there was something, they were content doctors didn't know what I had, it was like in their head I wasn't sick, but for me it was a relief, I even wanted to get it framed, at last we had a track of what it was, that it was actually something.
It was the beginning of a long journey, hospitalizations, biopsies, blood tests, X-rays,MRIs, they first thought it was Lupus, by the way they still think it is but not so sure, because I have glomerulonephritis that is supposed to be caused by Lupus,but all other symptoms and severe dryness is for sure caused by Sjogren's. Other than the medical aspect, medications, etc, the hardest part is all the changes that we have to do, we have to create a new routine, new goals and be a stronger person, a more positive one. It sure is easier said than done and it is a daily struggle, a fight againt your own body and mind. 
Today, I can say I accept my illness and I accept myself with all my flaws, I am far from perfect and I still have issues that I cannot fix a hundred per cent, but I try my best, I live the moment and enjoy each day that is given to me. I would even say I am lucky to have lived what I lived, to have experienced pain and been in a dark place, because it made me realize what is the most important in life; family, love and inner peace..all the rest is only details..

Monday, April 10, 2017

Chronic Illness Is Like A Warehouse

There’s an abandoned warehouse behind the library. I’ve been wanting to take photos there for many years, a bucket list kind of thing. I did it, finally crossed it off my list. Half jumped a fence and everything. Didn’t realize the other side was wide open til I was leaving, oops.
 It looks exactly as an abandoned warehouse should – parking lot overgrown with weeds, rusted fences, doors, and all.  This building I think was more recently used as some sort of nightclub, but hey. Maybe it adds to the charm.
That’s the thing. I’m not joking. I really do think the building is loaded with charm. Not the kind of obvious charm that hits you in the face, but instead a subtle beauty.
It’s like chronic illnesses. On the surface they are dark. Painful and ugly. Certainly nothing beautiful. But oh, I beg to differ. Through the darkness a light can shine, if you let it.
Those horrible days of chronic illness, when the pain is too much to handle, think of them like the photos of the warehouse- rustically beautiful. They’re hard, but you can do it. You can get through them.
Think of the beautiful things chronic illness has taught you. It has taught you to understand yourself in new ways, to care more for others, to learn balance, gratitude and perspective. It’s quietly beautiful, chronic illness. Just like my warehouse.

Tuesday, April 4, 2017

Communicating Your Needs During A Flare

Fighting chronic illness takes a complete toll on us. Our loved ones are always asking what they can do to help, but actually allowing people to help can leave us feeling guilty. I battled this feeling for a long time. I still have to remind myself it's OK to let someone help me when my body needs rest. It's hard to always answer the question "how can I help you". To make answering this question easier for me I made a list of the most common things I need help with when I am in pain. 
  1. Taking care of my daughter. My parents are amazing at helping me take care of my sweet girl when I am flaring. My daughter gets really anxious when I flare and wants to take care of me. I have to remind her that it's not her job to care for me. This has been the most challenging part of chronic illness. 

  2. Medication check! Making sure I have a full bottle of steroids and pain meds. Nothing helps to fight a flare better than these meds. 
  3. Easy meals are an amazing necessity when flaring. Having food that does not require a lot of prep makes life a million times easier when I am able to get up and move around. 

  4. Simple household task such as loading the dishwasher or doing a quick load of laundry. These truly are small things but mean the world to me. Nothing in this world stresses me out more than to be in the middle of a flare in a messy house. 

  5. Assistance with personal care is sometimes necessary for really bad days. A hot bath really helps soothes your joints but getting in and out can be hard. A trusted friend or spouse can definitely make this easier by being there to help you get in and out. They can even help wash your hair or get dressed if your body is really struggling. 

  6. No phone calls, texts, or visitors. There is nothing more aggravating to me then to have my phone ringing while I am trying to rest during a flare or feeling obligated to answer text messages. Over the years, I have communicated to my friends and family that when I am flaring the best thing for me is uninterrupted sleep. When I flare I try my best to send out a text to my friends and family to let them know I am turning my phone off. 

Having a list handy allows us to communicate to others what we need without having to constantly tell them. We get the rest our bodies so desperately need and they get to help us when we need it the most. What would you add to your list? How do you communicate your needs? Gentle hugs pain warriors! 

Thursday, March 30, 2017

Sharing stories helps me stay strong

Long before chronic illness was a part of my life, I was big on reading. When I was just a toddler, my mother made me my first book, a collection of large, brightly-colored magazine pictures glued onto white paper. We would sit together, looking and talking about what was going on in the images.

Those early days set the pattern for my life. Way before the Internet and before I even understood the concept of a reading group, I loved sharing the things I read with friends. As beloved as the ever-cool (and ever in middle school) girls of the Baby-Sitters Club were, it was nothing compared to the delight of discussing every nuance with another fifth-grader. There was something so incredible about sharing a private world with another person, someone who could exclaim, “I know, me too!” Instantly the conversation, no matter how brief, would elevate my mood.

At age 22, I was diagnosed with lupus, fibromyalgia and polymyositis, a rare disease that causes muscle atrophy. Suddenly the most simple tasks, which I had once done regularly without much thought, left me exhausted – if I could do them at all, that is. It was as though my life had abruptly been swapped with a stranger's, and no matter how much my family and friends claimed to empathize, I knew that none of them could truly understand. How could I blame them? It was difficult to understand it myself.

So my reading time became even more precious to me. With each book I read, it was easy to lose myself in the story. I could forget my own problems and limitations as I looked at the world through the protagonist's eyes.

This month, the University of Liverpool, The Reader and the Royal Liverpool University Hospitals Trust released their findings on shared reading (SR) being helpful for those who suffer from chronic pain. Individuals participated in small groups of no more than a dozen people, meeting weekly to discuss a variety of literature. Participants were invited to share any thoughts or memories that the selections triggered, often leading them to discuss various elements of their lives with illness or disability. Researchers found that the participants were able to alleviate their emotional pain by taking some control in what is ordinarily regarded as an uncontrollable situation. That, in turn, tied in with helping lessen their physical pain.

I could definitely relate to their findings. Over the years, I've shared my thoughts about the books I've read in a myriad of ways, from informal conversations with family or friends to online forums or blogs. This past year, I joined the local library's book group for the first time. It's amazing how you can take any book in existence, present it to a number of people, and get back the same number of different viewpoints and interpretations. Each person comes from a unique background, with different life experiences, and through them, you might start looking at things a little differently as well.

In the fourteen years since I first began my chronic illness nightmare, I've had my ups and downs. Symptoms have appeared – and mysteriously disappeared, only to be replaced with new ones. I don't know what the future holds for me in this respect. But I do know one thing for certain. Even if I can't be physically active, books will keep my mind active; and this is key in helping me navigate through the pain.

Sanity In Pain

All I can hear is laughter. My own, because I'm writing an article on sanity in chronic illness. Maybe I'm hearing the laughter of everyone who ever met me. When I got up this morning I was desperate enough to type 'how to not go insane' in the Google bar on my phone. Not surprisingly, the answers weren't there, not specifically related to chronic illness anyway.

Instead of relying on Google to save me, I decided to write the article I was searching for, despite the laughter I keep hearing. I'm still here. Surviving and thriving through it all. Maybe I'm more sane than I thought.  It's a gift to keep on going through MS, TN, and multiple types of chronic migraines.

Some days it's all too much - the pain, the medications, the process of managing the rest of life. Sanity plus chronic illness is a tough combination. Some ideas for holding on to sanity in the face of illness:

* Call or text a friend. They are wonderful distractions.

* Use social media. It's another great distraction, and an easy way to be social without leaving bed.

* Learn something new. Anything. It's a great way to occupy both mind and time. I'm trying to learn to weave.

* Read. Books will always be a favorite hobby of mine, and they are portal to whole other worlds. They are travel in your hands.

* Fall back on your hobbies. They're always there for you. I like to crochet and write. Interesting side note: I only learned to crochet because a doctor told me  to get a hobby, and crochet was one of the ones he did not recommended because of my hand spasms. I had a scarf for his wife at my next appointment.

* Take a walk. If you can, and your health and physical condition allow it. When the going gets too tough, I get to walking.

* Take a nap. They help sometimes. 

* Give up. Completely give up on the day. Have a meltdown. Flip. Freak out. Scream and cry. Get it over with. Move on. Don't stay down. It's okay to feel everything.

Do you have any special tips for staying sane in the face of your illnesses? Please share with me!

Monday, March 27, 2017

Basic 2017 Drug "Facts" ~ Patients Perspective

*Disclaimer: The opinions in this post are mine alone and publishing of this post is not an endorsement by this website for this treatment approach*

I'd like to share with you the knowledge I have gained over the last few years regarding Functional MRI Studies. This is just me saying it as it is, from my very limited understanding. I encourage you to do your own research.

What are facts?  Let's start with that definition: 
plural noun: facts
  1. a thing that is indisputably the case.

    "the most commonly known fact about hedgehogs is that they have fleas"


To me, each of us live in our own reality.  I often say, that none of us Truly understand each other.  Each person's experience with their illness is going to be personal to them. Toss into the mix different people, with different conditions, in various stages of each condition.  It's no wonder that we start looking like numbers/charts at some point to our doctors.  I do to myself if I'm being honest.

Ok, so in layman's terms here is what I understand about what has been happening with all patients and what will continue to happen.  I'll also go into what some people are doing about it (myself included).

Traditional MRI studies only give you a snapshot of the brain.  Functional MRI studies give you video of the brain while it's working.  That's the basic difference, as I understand it. The USA has Four (4) of these machines in operation now. Australia has one.  (I'd suggest reading the book "Explain Pain - Protectometer" Lorimer Mossely and David Butler are the two men involved in this book.  These guys are running the machine in Australia.) Until very, very recently "Western Medicine" has not had information technology applied to it.  Now we are starting to see more exponential growth, which we'll all benefit from in the near future.  For now, we're living in the present so what does that mean?

It means all of our doctors just "found out" that every drug that we are given for Pain or Anxiety is "bad".  They have lasting effects that are either counter productive to the patient for the exact reason they are taking it, or can cause some serious issues down the road.  Or both.  That being said, everyone has always known that Opiates and Benzo's can't be good for the brain.  They just didn't know exactly WHAT it did to the brain.  The sad part is Chronic Pain alone does horrible things to the brain long term.  We're in a bit of a conundrum here.  As I understand it: Opiates Work VERY WELL for ACUTE pain.  They don't work for Chronic Pain.  How don't they work?  The new studies show that we start to process pain in our entire brain.  And opiates don't work well once you've been on them for a while.  In fact, they can make you hypersensitive to pain. They can make the pain worse.  Benzo's potentially can cause early onset dementia.  They're looking at that more.  The two together cause a feedback loop that can intensify pain. These are all "facts" our doctors our being bombarded with. They're getting more information dumped on their desks NOW, than at any point prior in HUMAN HISTORY.  Think about this for a second.  Antibiotics weren't really even invented until 1930.... I digress.

Most States met here a few years ago and agreed to treat everything at the state level.  There are no "maximum state or federal guidelines" when it comes to Dosage of Opiates.  There is however, and agreement that each patient should be on no more than 120 MG Morphine Equivalent per day (ME from now on for our discussion purposes).  Each State seems pretty keen on this 120ME Daily rate.  It could actually help.

Well, except everyone way overreacted to that and the even NEWER information coming.  The CDC has reversed statements more times in the last year than I can count.

Personally, I got sick of the Opiates years ago and wanted off of them.  I still take them occasionally, and now they WORK GREAT when I do NEED them. I manage 99% of my pain myself.  With Home Grown Cannabis.   I smoke some, I eat some, some I make into Tinctures to Drink.  I'm basically sitting at home doing this the 5,000 year old Chinese Alchemist way.  Which sucks, but it is what it is.  No Doctor or Government agency is telling me what drug to take, when to take it, and how much to take of it.  Personally I believe the truth lies somewhere in the middle of all of these so called "facts".  I'm not sure of a whole hell of a lot these days.  I am pretty sure I'm doing the best I can.  Each day I try to have a good day. What the hell else is there to do?

Looking forward to my 2017 Garden.  Spring is Almost here in WA.  
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