2 posts in the category “Uncategorized”

5 Earth-friendly ideas for patients

Posted 4 months ago by

As Earth Month winds down, explore some environmental pointers, including how to donate (gently used) wheelchairs, what to do with empty pill bottles (earbud/jewelry case, anyone?) and where to dispose of unused meds (April 28, 2018, happens to be National Prescription Drug Takeback Day at 5,000+ sites across the U.S… read on!).

1. Donate unused medical supplies. Before adding unused supplies or gently used equipment to your trash heap, see if they’re on the wishlist of organizations that accept medical surplus, such as InterVolMedshare and Project C.U.R.E. (click to see lists of what they’ll take).

InterVol’s general rules of thumb for donations?

  • Would you want the item/supplies used on you?
  • Does it have one year left before the expiration date, if it goes in the body?
  • Does the equipment function as intended (no broken or missing parts)?
  • Is the equipment in good shape (no rust, rips, tears, etc.)?

2. (Properly) hand over unused medications. Few organizations accept prescription drug donations from individuals, and drug donation and redistribution laws vary by state. Look into the regulations where you live and comment below if you know of any organizations that accept donated medications (such as Insulin for Life, which collects some insulin and diabetes supplies).

Note: This Saturday is National Prescription Drug Takeback Day (April 28, 2018, from 10 a.m. to 2 p.m.), sponsored by the U.S. Drug Enforcement Administration twice a year so that people can bring unused or expired medications to a local collection site for safe disposal (search for a site near you). In the last Takeback Day in October 2017, people dropped off 456 tons of drugs.

3. Safely dispose of unused drugs and medical waste on your own. Cancer.net offers these pointers for medication disposal: “If you decide to take the matter into your own hands, you should always follow the disposal instructions found on the drug label or the patient information leaflet that comes with the prescription. Do not flush medicines down the toilet or sink unless this information specifically tells you to.”

The U.S. Food and Drug Administration lists the few medications that should be flushed— but check with your local water treatment and/or sanitation department about any rules or regulations.

The U.S. Environmental Protection Agency offers this info on proper disposal of discarded needles, sharps and other medical waste. Wondering what to do with old oxygen tanks? See this guide.

4. Find new uses for empty pill bottles. An Indianapolis-based charity called The Malawi Project organized a hugely successful pill bottle collection drive to send the ubiquitous orange containers to the African country hit hard by HIV (where people were carrying their pills loose or wrapped in paper). After a million pill bottles quickly poured in, the organization stopped accepting donations — but they still encourage people look into other organizations still collecting them, or contact local animal shelters to see if they need them.

Recycle Nation says that few communities accept the orange (#5 plastic) pill bottles in their recycling programs, but a company called Preserve collects them at natural food stores across the country (check out this map) to use in their recycled plastic products. CVS Pharmacy is reportedly working on pill bottle recycling programs.

People have come up with lots of other creative ways to reuse or upcycle pill bottles — just a few neat ideas include:

  • “Hide-a-key” container (with a rock glued on top)
  • Earbud/headphone holder
  • Jewelry case
  • Mini sewing kit
  • Child-proof storage for quarters (for parking or laundry), pins, nails/screws, medical sharps or other small items

5. Go paperless with your insurance company and doctor’s office. Opt for electronic communication, if you’re comfortable with it. Many providers now offer email and/or text reminders rather than snail mail postcards or phone calls. Also, hospital gowns can be a drag for patients, and the paper ones contribute to medical waste. Depending on the medical setting and type of visit, ask your healthcare provider if it’s necessary to fully undress and wear a gown or use other (optional) disposable items for your visit.

Happy Earth Month!

Have any favorites from this list, or any “green” tips of your own to add? Join PatientsLikeMe to talk about topics like this and swap ideas with others.

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Pre-diagnosis limbo: “I knew something was wrong”

Posted 5 months ago by

Before you were diagnosed with your condition, how long did you live in “limbo” with your symptoms and what was that like? Living with the unknown is a common part of the patient experience — PatientsLikeMe data shows that people with a wide range of health conditions live with their symptoms for several months or years before getting diagnosed.

Let’s take a look at the diagnosis “lag time” and some common first symptoms for various conditions, plus anecdotes and quotes about members’ earliest experiences with their condition (like this one from a member living with multiple sclerosis).

Diagnosis delay

The graph below shows how long it can take for people with various health conditions to receive their diagnosis. While it doesn’t represent every patient’s experience, it gives a sense of the hundreds — or in some cases, thousands — of days many people live with their symptom(s) before they get their diagnosis. (Click here for a larger view.)

* Median time between “first symptom” date and diagnosis date for members who’ve reported both on PatientsLikeMe, including (N=) 5,671 members with ALS; 12,870 with bipolar disorder; 40,846 with fibromyalgia; 430 with lung cancer; 7,918 with lupus (SLE); 14,929 with major depressive disorder; 30,262 with MS; 8,214 with Parkinson’s disease; 9,100 with PTSD; 6,979 with rheumatoid arthritis

Disruptive, elusive symptoms

“I knew something was wrong, just did not know what,” says one member with living with multiple sclerosis (MS) — a sentiment repeated in many forums.

What was your first symptom or hint that you had a health issue? When we ask members with certain conditions to recall their “first symptom noticed,” here’s a look at the three most commonly reported responses:

  • ALS – Slurred speech, foot drop, muscle twitching
  • Parkinson’s disease – Tremor in hands, tremor (unspecified), balance problems
  • MS – Fatigue, balance problems, numbness and tingling with pins and needles
  • Lupus (SLE) – Fatigue, muscle and joint pain, joint pain
  • Rheumatoid arthritis – Joint pain, muscle and joint pain, joint swelling
  • Fibromyalgia – Muscle and joint pain, fatigue, pain (unspecified)

Many health conditions have at least some similar or overlapping symptoms, which can confuse both doctors and patients. “It’s so weird because so many things feel like they may be something else,” one member noted in a forum discussion.

Members living with mental health conditions report a variety of symptoms. Looking at the graph above, many with mental health conditions appear to live with symptoms for three to five years or more before their diagnosis. Stigma surrounding mental health diagnosis and treatment could add to this delay and is a common topic discussed in the forums and in the medical community. Here’s just one comment from a member living with bipolar I disorder.

Years of “limbo”

Some conditions don’t have a standard diagnostic test or tool yet. Months or years without a proper diagnosis can be “hellish,” writes one member in the Parkinson’s disease forum, which launched a discussion that went something like this (can you relate?):

“My Doctors … and there were many …. misdiagnosed me for 10 lovely years! A hellish period…”

“It took 4 yrs in my case. The problem is no one seems to look at the person as a whole. The doctor’s are all specialists dividing the body into specialized ‘chunks.’ It’s hard to connect the dots this way…”

“It took over a year to be diagnosed. Then my family dr would not believe the diagnosis by the specialist and kept telling me that all the symptoms were all in my head and prescribing all the wrong stuff…”

“It took around 16 years to get diagnosed. Years of compiling a list of illnesses so long that even I started to think I was a hypochondriac…”

Many other communities have discussed their first symptoms and paths to diagnosis, including members with ALS, lupus, MS, and epilepsy.

How long was it before doctors correctly diagnosed your condition? Join PatientsLikeMe to connect with thousands of others who can relate.

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