"What matters most is how well you walk through the fire" -- Charles Bukowski

Tuesday, August 23, 2011

Be Your Own Advocate: Patient Records

Why having a copy of your medical records is important-- a must-read for the newly diagnosed

I was reading through my medical records from my first rheumatologist (who I found to be a complete idiot). He would ask me questions, but not let me adequately answer them without cutting me off, ignored many of my symptoms, made jokes about abuse when I came to the office by myself rather than with a parent (not funny to someone who has actually experienced said abuse, but thanks, doc.), etc. Needless to say, it was not a pleasant experience and I did not go back to that physician.  I did, however, request a copy of all labs/paperwork/physician notes for my own personal file and to send to Florida State for my medical withdrawal. In the process of reading these notes, I saw noted that I was sexually active. True. Sexually active “with a male for approximately two years now.” Wrong. Being sexually active does not mean one is heterosexual. Assumptions lead to consequences. This fact is not necessarily relevant to my specific condition, but what if it had been? What if it had been a different assumption and my doctor missed something because he did not take the time to listen or ask?

Better still was his note about how I was on a daily regimen of methotrexate. What? I was never prescribed that medication prior to that date. It was deemed too risky to start considering the results of my liver function tests. Was that in my file? No. The false note about my sexuality? Not relevant to my health, really, but was personally insulting. A false note about a serious medication with serious side effects? Absolutely relevant to my health and has since confused physicians who have needed my records and his notes.

So what are the lessons to be learned from this?
  1. Request lab workups and all medical records from each of your physicians. This includes their notes. Feel free to make up an excuse for why you need them, or simply say you want to personally keep track of your records. There is nothing wrong with being involved and having copies. In fact, it is vital that you do.

  2. Read the doctor's notes. I cannot stress this enough. Read them, review them, and if another physician requests them and the notes contain a medical error like mine did, make a note of this using either a high lighter or post it note and bring it to your doctor. Correcting errors will save your future doctors both time and confusion. It is not a bad idea to lightly point out to the physician who made the error that perhaps they made a silly medication typo in your file, and you want to let them know in case it could be important. If your physician isn't receptive or is personally offended, perhaps that is a sign you should find another doctor...

  3. At 18, you are legally considered an adult. Meaning that unless you give specific permission, your doctor's office should not hand over your records or information to anyone, including your parents. If you are weary of your parents obtaining your medical files, double check with the office that they cannot be handed out.

  4. Filing for disability. Should you file for social security disability benefits or have to deal with your insurance company, those medical records will be crucial to have (and know what's in them!). Read over them thoroughly and address any concerns you have before you submit them to whomever you have to for any disability claims. Do not be afraid to ask questions or address concerns with your physician. You are your own advocate before anyone else, but your physician should be your partner, not your opponent. If they are not willing to help you or speak with you about the matter, I seriously suggest finding a doctor that wants to be a team player.
  5. Know your rights. The Health Insurance Portability and Accountability Act (HIPAA) details your rights to medical records and privacy standards. The HIPAA is long, so I am not going to post it, but it can be found here.

  6. Before you pay, ask. Offices will often charge you a fee to obtain medical record copies. If you are asking for them for personal reasons, I absolutely suggest paying. They are invaluable to have. If you are requesting them to send to another physician, ask the office if they will send them directly to the other physician as a courtesy before you shell out some cash.
  7. Organize. Organizing your records into a binder or folder and bringing it with you to appointments might sound strange, but it may help you big time. I've actually noticed most of the people in the waiting room at my rheumatologist's office all have huge binders with them (including interesting elderly women who have bedazzled their binders...). Don't feel silly, feel prepared. Your doctor will thank you.

  8. Can my doctor refuse? Yes, if your physician believes that by giving out the records it puts you or another individual at risk, they can refuse to hand them over. However, if that is not an issue, they are required by law to give you your records. If you cannot get them through their office staff, your best bet is to contact the department of your state that works with HIPAA, or quite frankly, print a copy of HIPAA and take it right down to that office. If you're dealing with a hospital, go directly to their medical records department.

Saturday, August 20, 2011

Cute Gift Idea!

Cute gift idea: Make or purchase the tote and fill with your friend’s favourite things to cheer them up— a stuffed animal, magazines, their favourite food, etc. Great hospital visit gift, or just a ‘thinking of you’ type of thing. For someone that is newly diagnosed or unfamiliar with the Spoon Theory— printing it out and including it in the tote might not be a bad idea. You can purchase this tote here.

Monday, August 15, 2011

ChronicCurve is now on Facebook!

I'll be using this to alert those using facebook to new blog updates and content, as well as new jewelry creations. My latest endeavor-- autoimmune awareness jewelry. Please please please like and share the page with your family and friends, as I will be posting resources for them too. I'd also like to use the page as a way for followers to post what type of content they would enjoy seeing, or resources they would like, but have not been able to find. So, if you have any kind of feedback, please post on the wall!

All of these things and more here, including different variations of all stickers/decals and shirts. Will be posting Lupus, Fibro, and endo-related products next.

DIY Bathroom Storage: No Bending

I have a bad back, bad hips, and bad knees. Obviously any type of bending is both painful and difficult, and living in a dorm made storage that wasn’t in a low cabinet or under my bed scarce. I stumbled upon this DIY project and thought it was absolutely perfect for my bathroom and eliminated having to crouch and dig under my dorm room sink for my hair stuff. Sure it requires a slight tilt at the waist, but that is nothing compared to having to bend my knees and get low.

Use hook-and-loop tape to attach 5-in. lengths of 2-in.- diameter PVC pipe to the vanity door to hold the curling irons. Do the same thing with 3-in. pieces of 1-1/2-in.-diameter pipe to hold the cords. Just measure your curling irons to see how long your “holsters” need to be. Let your curling irons cool before you stow them away.
Super simple DIY trick. Click through for the source to see other DIY bathroom storage ideas!

3. But I had symptoms since:

Saturday, August 13, 2011

  • The handicapped parking space I choose to use is not your designated space, you obnoxious elderly woman who walks better than I do, so stop yelling at me for “stealing” your so-called designated spot.

  • Fatigue does not equate to simply being tired. Put fifty soaking wet duvet covers over your head and take a xanax, lose the ability to think clearly, drop bricks on your body, then raise your temperature to 102 degrees F while trying to function normally and tell me that what you’re feeling is simply being tired, because that is the only way I know how to describe fatigue.

  • I will say this again: your magical healing crystals will not cure me.

  • No, I am not sick because I do not have a close relationship with God. I am sick because of genetics and because my immune system does not function correctly.

  • “You don’t come off as a sick or unhappy person” — that is because A. you have only known me for about one minute, B. I have chronic illnesses that are not always visible when I am standing in front of you for less than five minutes, and C. Being sick does not mean I have to be an unhappy person.

  • My grandmother kept track of every book she ever read on index cards. I found them after she passed in the back of her closet. I’m doing the same thing, only I’m using a goodreads account. I’ve been reading a lot lately, so if you have any book recommendations please feel free to share :)

  • Low fat white chocolate mochas are the shit.

Spread the word! Invisible Illness Week 2011 will be September 12-18th

Friday, August 12, 2011

Weekly Link Roundup 08/14/2011


An Endometriosis/Pelvic Pain-related roundup this week!
  1. Uncommon Manifestations: Sciatic and Thoracic Endometriosis— an article on Endosupp about the lack of awareness of these rare endo forms, their history, treatment, and clinical signs and symptoms. If you have endometriosis in your family, suspect you have endometriosis, or have a doctor who refuses to listen to specific symptoms pointing to SE or TE, please please please seek out a second opinion. As unfortunate as it may be, sometimes the physician must be educated as well. Doctors can learn a lot from an informed patient. Be your own advocate.
  2. Endometriosis Support Forum on HysterSistersHysterSisters is a site dedicated to women suffering from gynecological conditions and recovering from surgery, specifically hysterectomies. This Endometriosis Support forum includes over 101 pages of threads
  3. EndoCenter— Endocenter is an organization that “addresses the ever-growing need for Endometriosis research, education, awareness and support on a global basis.” A great resource and database for latest endo news. Endocenter lists multiple contacts and websites for both online and in-person support groups, as well as volunteer and awareness opportunities. You can also request EC materials from the organization as well. Better yet, their headquarters is here in south FL :) 
  4. TalkAboutEndo— A tumblr very similar in concept to Chronic Curve, only dedicated specifically to Endometriosis awareness. Straight, simple, and to the point— Talk About Endo provides endo facts, news, research, an honest place to discuss this painful disease, and most importantly, hope.

A question for my followers: Do any of you know of any resources that discuss and provide support to women trying to maintain intimacy in a relationship while suffering from pelvic pain? A painful sex support network, if you will. If anyone knows of any valuable resources, please send them to me— thanks!

Blog of the Week: Serif & Sans— Run by the lovely Miss Stephanie Sharp, an aspiring journalist with strong opinions and a unique perspective on contemporary issues. Her writing is both tasteful and profound with a unique eloquence in her words, touching on everything from Disney princesses to politics. Miss Sharp’s blog is a must-read.

2. I was diagnosed with it in the year:

Rheumatoid arthritis and autoimmune issues: April of this year
Scoliosis: 2001
Pelvic pain/SE: 2010

Thursday, August 11, 2011

New Study Shows DNA Test Highly Accurate In Predicting Curve Progression in Scoliosis Patients ›

Raynham, MA – (December 1, 2010) –A new study shows the SCOLISCORE™ AIS Prognostic Test, a DNA test to determine the likelihood of curve progression in children with mild adolescent idiopathic scoliosis (AIS), an abnormal curvature of the spine, is 99 percent accurate in predicting which children are least likely to progress to a severe curve (Cobb Angle of 40 degrees or more).
So exciting.

1. The illness I live with is:

30 Day Invisible Illness Challenge

30 Day Invisible Illness Challenge in honor of Invisible Illness Week - September 12th-18th.

Things About My Invisible Illness You May Not Know:

1. The illness I live with is:
2. I was diagnosed with it in the year:
3. But I had symptoms since:
4. The biggest adjustment I’ve had to make is:
5. Most people assume:
6. The hardest part about mornings are:
7. My favorite medical TV show is:
8. A gadget I couldn’t live without is:
9. The hardest part about nights is:
10. Each day I take __ pills & vitamins:
11. Regarding alternative treatments I:
12. If I had to choose between an invisible illness or visible I would choose:
13. Regarding working and career:
14. People would be surprised to know:
15. The hardest thing to accept about my new reality has been:
16. Something I never thought I could do with my illness that I did was:
17. The commercials about my illness:
18. Something I really miss doing since I was diagnosed is:
19. It was really hard to have to give up:
20. A new hobby I have taken up since my diagnosis is:
21. If I could have one day of feeling normal again I would:
22. My illness has taught me::
23. Want to know a secret? One thing people say that gets under my skin is:
24. But I love it when people:
25. My favorite motto, scripture, quote that gets me through tough times is:
26. When someone is diagnosed I’d like to tell them:
27. Something that has surprised me about living with an illness is:
28. The nicest thing someone did for me when I wasn’t feeling well was:
29. I’m involved with Invisible Illness Week because:
30. The fact that you read this list makes me feel:

Wednesday, August 10, 2011

Lack of Communication in the Medical Field

is incredibly frustrating. Though I understand in most circumstances why it is so difficult for doctors to communicate with each other, what I do not understand is when they do not even make the effort.

Sunday, August 7, 2011

Weekly Link Roundup 08/07/2011

  1. Aidsforarthritis— Awesome awesome resource for various products to help people with arthritis or other physical disabilities. AFA sells everything from devices to help turn door handles to kitchenware
    to a tool that makes putting on jewelry easier. Definitely a great resource.

  2. The Ultimate Guide to Sex and Disability: For All of Us Who Live with Disabilities Chronic Pain, and IllnessWritten by Miriam Kaufman, Fran Odette and Cory Silverberg, The Ultimate Guide to Sex and Disability touches on topics from sexual self image to fatigue, even incompasses the subject of sex toys (and much much more). Definitely a book to check out regardless of your age, gender, or disability/illness, and a great tool for partners of chronically ill individuals to read. A must for struggling couples.

  3. Relax the Back— This company provides aids to ease and eliminate back and neck pain in the car, in the office, or simply lounging at home. Everything from physical therapy aids to ergonomic chairs. A site to consider if you have degenerative disc disease, scoliosis, AS (anklosing spondylitis), or RA just to name a few. What I would do for a tempur-pedic mattress…

  4. Migraine Triggers: Identifying and Managing— I’ve suffered from debilitating migraines since I was a sophomore in high school. They have gone through phases of intensity since I was fifteen, and only this year did I learn exactly what triggers and worsens my migraines. This helpful article on Migraine.com addresses common triggers, how to identify them, and how to manage them.  Oh, and just a quick fact: migraines are associated with inflammation in rheumatoid arthritis patients. My migraines were one of the first signs that something was wrong, but my doctors at the time were essentially incompetent  my symptoms were not connected until this April.

Blog of the week: Naked Medicine and Smart Healthcare Jane Chin, Ph.D explores medicine and current health care issues, patient activism and advocacy, smoking, stress, the overuse and misuse of antibiotics, you name it.

As always, please send me an email if you would like your link removed or altered :)

Saturday, August 6, 2011

It does not matter how slow you go so long as you do not stop. — Wisdom of Confuscius

I’ve been thinking about this quote a lot lately and how important its message is to the chronically ill or in pain. What does it mean to “stop” when you have a chronic illness? And how does one accept having to slow down? Perhaps one of the most important subjects I will touch on…

Natural forces within us are the true healers of disease


To Write Or Not To Write

A bit of an update:

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