Medication Shaming

One thing that I have come across very often is medication/treatment shaming.Everyone with chronic illnesses have had their fare share with bad mediations. Someting that didn’t agree with them, didn’t help or had a bad side effect. It’s a fact of life for spoonies, but what I hate is shaming drugs that could potentially help someone. It always seems that  if someone had a bad experience with this drug, they posted horror stories on every related post on the world wide web. I swear they were like the soothsayer in Julius Caesar.. Instead of them saying “beware the ides of march” they were screaming “NEVER EVER TAKE THIS MEDICATION. MY AUNTS BROTHERS SISTER IN-LAWS COUSIN HAD A SEVERE REACTION. BLACK LIST THIS MEDICATION. NEVER TAKE EVEN IF IT’S LIFESAVING” over and over again. How is this helpful? It scares patients away from potentially life changing treatment, over a 1 in 1,000,000 chance of that particular reaction.

 

I’m a big promotor of telling people my experience with medication, but my goal isn’t to scare them with my stories. I always want to know what I’m getting into when I begin a medication, as I believe that is my right as a patient, but I think there is a fine line between helping a person and hurting them.

 

What is your thoughts on these types of posts? Helpful or hurtful?

 

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Unemployed, sick, and judged

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Parent’s friend: Oh! You graduated! Where are you working this summer?

Me:….I actually don’t have a job… I’m just having a restful summer

Parents Friend: oh… thats nice

You all know this feeling. Whether our friends have graduated and are moving on to a new period in their life, or they are just in the break between grades, the vast majority of them hold a full time job during the summer months.As a teenager I once felt the urge to get a part time job in May of 2011. I thought I could handle full time classes and working 15 hours a week. Little did I know that having the extra stress accompanied with a job would put me into a 4 month long flare. After my experience with my first part time job, I decided that working was not in the cards for me during this time in my life. Besides.. I already had a full time job dealing with my chronic illness.

When the next summer rolled around I knew that a job was not going to happen. So I decided to fully immerse myself in volunteering. It gave me the flexibility with missing shifts and having a reasonable shift in terms of length. I thrived in this setting, and I loved volunteering.

This summer, after my graduation from high school, having a job seemed to a must amongst my peers and in the opinions of the adults around. Having the conversation with a friends parents always ended in the same way.. awkward. They always seem to have this look of disgust on their faces… They believe that my parents are giving me a “free ride”.

My parents have taught me the value of a dollar growing up. My parents do give me money weekly for any costs that I run into. But other than that, I work around the house at a pace I can handle. I love working around the house doing things like cleaning,organizing and helping my grandmother

Living with a chronic illness is seriously a full time job.. Jack Mercury says it perfectly in her bio “Professional Sick Person. Specializations: Crohn’s Disease, Depression, Generalized Anxiety and Obsessive Compulsive Disorder”

We are all professionals. Just in a different world

Check out Jack’s twitter,instagram and blog!

https://twitter.com/chronicbeauty12

http://chronicallybeautiful12.blogspot.ca/?m=1

Instagram: chronicallybeautiful12

The Road Less Travelled

I often find myself wondering where I would be in my life today if I never got sick. What relationships would I have kept? What opportunities would I have been able to take advantage of? What would be different?

I found myself pretty upset over the past couple of days because I know that my life has taken the road less travelled, one with many bumps and pot holes and wrong turns.. With a couple of U-Turns thrown in just for fun.I know everyone encourages people to take this less travelled road, but sometimes you just want to be normal, you just want to blend into the background, be the paint on the wall, invisible .

I’ve had some family (Who I absolutely adore) come to visit for the May long weekend and this has brought back the feelings of being secluded from the normal population. Carrying around my pill case(a 18 year old carrying around this many pills ALWAYS draws attention), stumbling over my words, and having problems coping with my pain has brought this feeling of being the odd girl out back to the surface.

Having something that makes you stand out is something that we are encouraged to celebrate in today’s society, but I have found that theres always that little voice inside your head that wishes that you could just be the same as everyone else.

I know that I’ve only hit a bump on the road in the grand scheme of things, but it’s still a learning experience that I hope will give me some new insight to this hectic life of a chronically ill teenager.

A Blessing or A Curse?

I’ve heard a lot of people out there who’ve gotten sick compare their situation to a blessing, as it has changed their lives for the better, even though they’ve had some rough patches along the way. On the other side of the coin you hear the people who purely think that them becoming sick is a “curse”.. Not in the witchcraft sense, but, in how it’s made their lives a living nightmare. Now I must say, at different times over the years I’ve found myself in both situations, but I’ve come to a realization.
Becoming sick was not a amazing thing for me, if I could have prevented it I would have.. No questions asked, but I’ve also gained valuable knowledge from being sick so long. So which is it?
Neither. I believe that this was not a blessing or a curse, but a lesson. Something that I will learn from, suffer with and hopefully grow with. One of my favorite teachers has ways said “learning should sometimes be uncomfortable” and it’s true. This learning experience has not been a walk on the beach, nor has it been the happiest days of my life, but I’ve also had invaluable experiences that I know I would have never had, without this condition.

Do you consider your condition a blessing, curse or a learning experience?

Response to “The Big Question” Originally Written by belowtheradar002

Please go check out the original post! It’s amazing

As I read your latest blog post this morning while waiting for my high school bus, I was close to tears. The repeated question”How do we do this? How do you live” is something almost all chronically ill people can relate too. The thought of living the rest of your life in a state of Ill health is daunting as is, but then having to fight for your rights as a patient, a human being, along with trying to retain your health is a massive juggling act that absolutely no one deserves.

I have a similar answer to you K, to this ever daunting question. While I was seeing a neurologist way back in 2008, she didn’t believe in the scale of my pain, so time and time again she refused any type of treatment and just told me “You could be like this the rest of your life, you need to learn how to deal with it.

As you can imagine, when she told me that I was not a happy camper, but I have found out that, her making that statement has forever changed my life. I know that I have No other option other than to go on with my life, with the occasional down days..

But I’m not perfect, I often loose sight of the goal and I lay in bed for days on end, and I let my pain take over.. But having the support from my family, friends and online community can always give me the boost to get back on the wagon!

Again, please check out their original post!

http://belowtheradar002.com/2013/05/08/the-big-question/

30 Things About My Migraines That You Might Not Know!

30 things about my migraines that you might not know! 

  1. The illness I live with is: Maladaptive pain disorder( but many doctors have told me I have chronic migraines) 
  2. I was diagnosed with it in the year: 2011
  3. But I had symptoms since: 2007
  4. The biggest adjustment I’ve had to make is: my social life/ my education
  5. Most people assume: I’m looking for attention
  6. The hardest part about mornings are: convincing myself to get up
  7. My favorite medical TV show is: none: Greys Anatomy
  8. A gadget I couldn’t live without is: my cell phone.. it keeps me connected to my friends when I get really sick
  9. The hardest part about nights are: when I just cannot sleep
  10. Each day I take __ pills & vitamins. Each day I take 5 pills and 2 sprays of a prescription medication, then if its very bad I take a wafer pill just to add to the fun!
  11. Regarding alternative treatments: Physio, massage, acupuncture and now on to the Ceflay anti migraine machine!
  12. If I had to choose between an invisible illness or visible I would choose:  100% visible. If people believed that I was in constant pain, half of my daily battle would be beat.
  13. Regarding working and career: Still a high school student. Struggling.
  14. People would be surprised to know: That I volunteer as much as physically possible
  15. The hardest thing to accept about my new reality has been: Loosing so many friends, and having so many authoritative figures doubt my illness
  16. Something I never thought I could do with my illness that I did was: Complete high school. I graduate this coming June
  17. The commercials about my illness: make me frustrated. They make all my peers think that all headaches can be cured from taking advil. NEWSFLASH. They can’t 
  18. Something I really miss doing since I was diagnosed is: being able spend a lot of time with my friends
  19. It was really hard to have to give up: my old life
  20. A new hobby I have taken up since my diagnosis is: blogging!
  21. If I could have one day of feeling normal again I would: Drink lots of lattes, do lots of shopping with a lot of my friends, go out to dinner with my family then round off the evening with going to a movie theater.
  22. My illness has taught me: I am a lot more mature than most adults I’ve met
  23. Want to know a secret? One thing people say that gets under my skin is: when people tell me they “would die” if they had what I have
  24. But I love it when people: understand, and treat me like a normal 18 year old
  25. My favorite motto, scripture, quote that gets me through tough times is: ” Pain. You just have to ride it out, hope it goes away on its own. Hope the wound that caused it heals. There are no solutions, no easy answers. You just breathe deep and wait for it to subside. Most of the time pain can be managed, but sometime the pain gets you when you least expect it, hits way below the belt and doesn’t let uo. Pain. You just have to fight through, because the truth is you cant outrun it… and life always makes more” Greys Anatomy
  26. When someone is diagnosed I’d like to tell them: Please do not feel alone. Start looking for others like yourself, I promise there is someone out there who has a similar condition.
  27. Something that has surprised me about living with an illness is: How rampant discrimination is.
  28. The nicest thing someone did for me when I wasn’t feeling well was: My mum brings me flowers quite frequently, which I greatly appreciate
  29. I’m involved with Invisible Illness Week because: Well, I just found this online, but I will definitely be participating in invisible illness week next year!
  30. The fact that you read this list makes me feel: like someone cares 

Original posting: http://thatmword.com/post/16590346268/30-things-about-my-migraines-you-may-not-know