Heart Stethoscope

How to Work Effectively with Doctors/Specialists

This is such a necessary part of spoonie life, but it definitely can be one of the worst parts. I am still learning the fine art of doctor-patient relationships but I will share with you what I know so far.

How to Work Effectively with Doctors as a Patient

  1. Understand that doctors are people, too.
    Doctors are not miracle workers, usually. They are human, so remind them about your case if they forget and remember that they are (probably) doing their best.
  2. Don’t expect too much.
    All doctors want their patients to have positive outcomes. It looks good for them if they’re helping their patients so they have a real motivation to give you the best care that they can. That being said, there is very rarely a magic potion to cure your ailments. They feel frustrated and disappointed when your treatment doesn’t work also. If you go in with lowish expectations you will have a better chance of being happily surprised, as harsh as that may sound.
  3. Don’t quote things you read on the internet, unless it is a proper peer-reviewed article.
    This is a definite doctor pet peeve. It is good to research your symptoms and illnesses, but be wary of your sources. Scientific journals can be hard to understand but it is important that you find valid information before bringing it up to your doctor.
  4. Be honest about everything.
    The good, the bad, the ugly. Some of our symptoms and side effects are pretty gross. Whether they be bowel issues or other unflattering situations, it is imperative that you share these and other concerns with your physician. They can’t help problems that they don’t know exist. Even things that you don’t think are important, tell them anyway. The more information the doctor has, the better the potential outcome.
  5. Keep records of symptoms.
    Doctors enjoy this. They need to know when the symptoms started, how severe they were, how long they lasted and what seemed to help them. These records help the doctor identify if they are side effects to medications or if they are a brand new symptom or a new condition altogether. Keep track of these things!
  6. Be a patient patient.
    This is something I’m still working on, as patience is a virtue I may have not inherited. I feel like I’m constantly waiting and always phoning and leaving messages for doctors. It becomes infuriating to say the least. That being said, try to not take your frustration out on the receptionist, nurse, or physician. It may not be their fault, and they will all appreciate your patience.
  7. Kill them with kindness.
    Going along with the patience, even when it may kill you, kill them with kindness. They will likely be much easier to deal with if you are pleasant with them. Remember that you have the power to change not only your day, but theirs as well. Change it for the good. You’ll never lose by being nice.
  8. Thank them in writing.
    Writing a thank you card is always a good idea. If they helped you in a substantial way, it’s always nice to let them know you appreciated their treatment. It’s a classy move that may pay off in the future!

That’s what I have for today! Any other hints you think I should add?
Have a great day! :)

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relationship

How to Have a Relationship in Chronic Pain

Good Afternoon, Warriors!

As usual with a new post, here is the new Song of the Week to empower you and give you strength!

I have to be honest here, when writing these “how to’s” I feel a bit like a fraud! Who am I to tell other people how to do anything? I am no expert in any sense of the word. I am just a girl living with these illnesses, trying to help people whenever and wherever I can. I do have a pretty successful marriage that I believe is in large part due to my amazing husband. That being said, here is how we make it work!

  1. Honesty is key. Both partners need to be straight up with one another at all times. If you’re having a bad (or good) day, they need to know what to expect. If you aren’t up to outings, let them know! Pushing yourself will only hurt you both. Keep it honest about the realities of your conditions. And try to always let each other know what you need. Don’t hold things in until you burst.
  2. Education is Important for Support and Understanding. Chronic pain workshop and education classes can be outstandingly helpful for both parties. Workshops together and separately are vital for understanding. When both of you understand the illnesses and treatment plans you can better work towards a sustainable and healthy future.
  3. Support Groups are Supportive. Not just for the chronic pain warrior, but for the caregivers as well. Caregivers hold a lot on their plate. They feel like they always need to be strong and able to help, but they need help too! It is not easy for them to watch their loved one in so much pain and feel utterly helpless about it. It is important for them to attend Caregiver Groups so they feel supported as well.
  4. Keep the Intimacy Alive! Spouses can feel like nurses if their time is spent arranging pillows, giving medications, and turning on heating pads. It is important to still do “couple things” when you’re up for it! Dress up and go on a date, have a picnic outside, have sexy time! These things are absolutely vital. Orgasms are good for pain relief! That’s an actual fact! Sex and Arthritis Sex and Chronic Pain give some helpful hints when discussing sex in the realm of chronic pain. I know it’s a personal topic and varies from situation to situation.
  5. Keep up with the Inside Jokes and Netflix Binges! My husband and I have really gotten closer throughout these illnesses. I think it’s hard not to, when it’s usually just us here dealing with the day-to-day of the symptoms and realities. Because of this, we have many inside jokes and our own little language basically. It brings us closer as a couple and strengthens our bond. We have a couple things on Netflix we’ve rewatched about a million times (Bo Burnham- What) and enjoy finding new shows to binge on!
  6.  Remember to Appreciate One Another. This is probably the most important. Just be appreciative of what each of you brings to the table. If your spouse takes great care of you, thank him/her. If you book the appointments and are there for morale boost, that’s an important job too! You’re a team. A damn good one, too. Please and Thank You’s are still the magic words.
  7. Find things to do That Aren’t Illness Related. You can never really take a break from these illnesses. They’re chronic. And we all know what chronic means (thumbs down). But if you like to play computer or video games to take your mind off of the pain, or can beat each other at Words With Friends, those are cute options that keep you connected in a non-illness way!

    I hope this was even a little bit helpful! If you have any questions please email me at chronicallycourtney@gmail.com.

    Love,
    Courtney

    *Disclaimer- Bo might not be for everyone. He is a comedian and can be offensive depending on your preferences and tastes*

 

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To the People who Don’t Know How to Respond to my Chronic Pain

Dear Friend/Acquaintance/Family Member/Colleague/Stranger in line at the mall, etc.,

Good Morning!
I hope your day thus far has been well and that both your heart and mind are open as you continue on reading this letter.

I am used to getting looked at when my husband pulls into a handicapped spot, or when I am out with my cane or walker. It is hard for people to grasp a young woman in need of mobility aids; a second glance is a relatively natural response. The questions and comments I hear vary from day to day, but the most common one is “what did you do?” somehow implying that my disability is my own error because the only reasoning they can come up with is that I fell while drunk and in heels. It’s not a ridiculous assumption as I’ve had my own fair share of liquor-induced accidents, but the shape I’m in currently is in no way my fault.

For the most part I welcome questions and inquiries. It is better that you know the truth so that the look of shock or ignorance is spared for the next person like me you come across. I am definitely not alone here and there are millions of chronic illness warriors around the world who need any bit of advocacy and awareness I can spread, and I am more than happy to do so!

Here are answers to some of your pressing concerns:
1. These illnesses are chronic which means they will last an incredibly long time, most likely the rest of our lives.

2. We have probably tried every single “miracle cure” you’re trying to sell us. Thank you for your efforts (and we may bring them up to our doctors) but we don’t need to get your hopes up, or our own. I’m glad it worked for you sisters’ husbands’ friend but that doesn’t mean it will work for me.

3. I know I am too young to have these illnesses. But nevertheless, I have them and this is the situation. Neither of us needs to lament over this fact any longer, thank you.

4. Diet and exercise are important, no doubt about it, but if I didn’t need to take handfuls of life saving medication I wouldn’t. These are prescribed for a reason.

5. What we do need, more than your stares or medical advice, is a smile and for you to maybe hold the door open for us. Simple kindness goes a very long way! :)

6. If you see me stirring around uncomfortably in a waiting room/office/movie theatre it is most likely that I’ve been in a position too long and need to move. I’m trying to be inconspicuous and I apologize if I’m in your way but the pain is usually out of control and a little re-positioning goes a long way.

7. If you see me at home (yours or mine), you may see me taking all sorts of pain medication. No, I’m not addicted, these are necessary to get me through the day. Please withhold your judgement. I’m not happy about the situation either.

8. Yes, the mobility aids are necessary. They literally aid me to be mobile. If you’d like me to move Sally the Cane or Felicia the Walker are coming with me.

9. It can be incredibly difficult to watch someone writhe in pain and it brings tears to my eyes that you have to see me like this, but it is my life. I want to spend time with you and be the old me, I want it more than anything, but the new me needs you also. When I’m in this sort of pain please just let me be and maybe offer to grab my meds/tens machine/heating pad. I know you’ll want to help more but your presence and understanding are all I require.

10. Remember I’m still me. I am still up for movies/netflix/and gossiping all night long. I can rock a movie marathon with Sour Patch Kids like nobody’s business.

Thank you so much for all you do for us. I know chronic pain and illnesses are hard to understand- I still struggle with grasping all of these straws- but your willingness to stick it out with us means the world.

Please spread this to all your friends! Understanding is key!

Love,

Courtney

©chronicallycourtney

 

 

 

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