Chronic Illness: It's Not a Competition

05/07/2023

When you talk about a disease that is difficult to get diagnosed, do you try to use correct terminology? This just came up in a patient group, where a patient stated she was getting “knots,” which is what we usually use in laymen’s terms when talking about working out sore muscles. This particular disease actually causes painful lipomas - sometimes hundreds of them - to grow all over the body. If you know which disease you have or suspect you have and you know the effects it produces, help your medical professionals by using correct terminology whenever possible. So if you mean lipomas, say lipomas, not “knots.”

04/12/2023

Are you trying to find a doctor in your city, or even your country, that specializes in your disease? I have used Medifind.com so many times to help fellow patients find doctors. I just helped a rare disease patient yesterday find a doctor in my city! This site will tell you how much knowledge a doctor has about your particular condition. That makes all the difference when trying to find someone to care for you.

When it comes to your health, nothing is more valuable than time. Quickly find the best doctors, latest medical advances, and active clinical trials with MediFind. Our goal is to dramatically reduce the amount of time and frustration you spend finding the right healthcare, so you have the best possi...

03/10/2023

How do you respond to someone who says, "You don't look sick," or "But you look fine!"

Has that other person ever had an x-ray or MRI? Have they had blood tests? Why have they had those done, if they appear to be fine? Because their doctor can't see what's wrong. But they know something might be going on.

Did you know that Multiple Sclerosis patients were accused of being overly dramatic, and making up their symptoms? Along came the CT scanner machine around 1972, and suddenly the whole world could see the lesions. Hey, the patients weren't lying!

So just remember that there is a disconnect between your appearance and what is happening with your body.

03/08/2023

Are you having a hard time affording mental health counseling? You may have options. First, try the site freementalhealth.us. They have listings for all 50 states in the U.S., and also cover crisis mental health and addiction services. Next, try contacting universities with graduate mental health programs. Many have clinics set up to see members of the public so that graduate students can accumulate credits to graduate - and the grad students are usually eager to listen, meaning they aren't burned out! I've been through 3 semesters of treatment myself. Also, if you haven't reached out to the wonderful operators at 211 before, this is a great time to dial that number. They also know about community options and have all kinds of ideas.

02/09/2023

Do you know about HerJustice.org? It's this incredible organization in NYC that serves women who need lawyers. Why? Because women need lawyers - especially women who are poor. Herjustice.org is small, but they are mighty. Do you wish your city or state had this resource for you? They serve:
70% Mothers
70% Born outside of the U.S.
80% Are survivors of intimate partner violence
90% Are women of color
100% Are women living in poverty in NYC.

Her Justice stands with women living in poverty in New York City by recruiting and mentoring volunteer lawyers to provide free legal help to address individual and systemic legal barriers.

02/09/2023

I have an elderly neighbor that I help in various ways. Today I stopped by to take her garbage along with mine, and she stopped me and announced with a fair amount of dread, "Bill [another person who helps her, with transportation and other errands] told me that there was an announcement on the news that eye drops are making people blind and poisoning them, so now I have to stop using them. I don't know what I'm going to do!"

I happen to know that my neighbor was just at the eye doctor two days ago, and her doctor didn't say anything. I also know that she uses the eye drops frequently, at least four times a day, if not more. So I told her to wait a moment, and to pass me the eye drops. Luckily I had my phone with me, also known as my pocket computer, and I could quickly search key terms to find the issue. There was, in fact, a recall for eye drops. But I carefully read the article, compared brands, read and re-read the bar codes and expiration dates, and handed the bottle back to my neighbor. I told her that according to the information provided in the articles that were published, she was not in any danger from this particular issue, and she could continue using her eye drops. We definitely feel terrible for the people who are affected by this, but her bottle appears to not be included, and the pharmacist will make sure that everything that is a problem is pulled from the shelves the next time she goes to buy drops.

My neighbor was instantly relieved, as she had worked herself into a very worried state. I had told her that it was the danger of raising the alarm without doing research; just walking in and saying, "Well, I heard..." and then walking away. It doesn't do anyone any good if you only have partial information and it's not thorough or relevant. So she can just take a deep breath and say, "Okay, bad information gone." And that's what she did. Seniors aren't always comfortable researching info, and may only hear partial information, so it's important to walk them through the steps of discovery so they understand where the information comes from, and they feel less like everything is out of their control.

02/06/2023

Are you, or is someone you know, looking for wigs? As someone who has had to wear wigs for 20 years, I have some recommendations:
1. Monofilament part or top: This makes it look as if the hairs are growing out of your scalp;
2. Lace front: This makes it look as if the hairs are growing out of your scalp in the front;
3. Synthetic hair is so easy to take care of! Don't go for the least expensive wig. Plan to spend at minimum $200 per wig, but it should last at least 4-5 months, if not more.
4. I prefer heat-friendly wigs: Heat-friendly wigs allow you to use a heat implement like a curling iron or flat iron so you can press down frizzy hairs that inevitably happen from your body heat when you have been wearing your wig a while.
5. Invest in a good conditioning spray: I prefer Hair-U-Wear, which I spray on the hair before using my curling iron.

I have favorite sites that I order from, and then I go to hair stylists who have experience cutting synthetic hair. It's not the same as cutting natural hair; it will be more coarse, and may even dull their blades. I shop wigsbypattispearls.com (a small business!), wilshirewigs.com (been using them for almost 20 years!), and namebrandwigs.com (a newer find). My suggestion is to sign up for mailing lists, because they will notify you of sales. For the last few years they have been running sales of 30% off monthly, where for years before that we were lucky to have those sales three times a year.

These are so easy to take care of if you purchase synthetic hair. Before you go to bed, wash in a small tub of cool or cold water - I use Brandywine Non-Static Shampoo for Synthetic Hair (the scent isn't heavy), a half cap full - and let it soak for 5-10 minutes. Then rinse thoroughly, and let it soak again with about a tablespoon of unscented fabric softener. Do NOT rinse, just drain, and then let it drip dry. I usually hang mine in the shower overnight. In the morning it's completely dry. Never, ever, ever rub or twist your hair. Treat it like a delicate baby.

02/06/2023

What is a SHIP office, and why should you care?

If you are self-employed, like you run your own small business with 10 or less employees; or you drive for Uber or Lyft; or you are wondering if you qualify for Medicaid (medical assistance) through your state; or if you have Medicare and you need help finding a supplemental plan; use this link to locate your state's SHIP office!

SHIP is the acronym for State Health Insurance Assistance Program. I can tell you right now that every state is vastly different. Some states, like Minnesota, also have programs where you can find information about assistance for children. Some states have very little in place except a promise that they will call you back, and in the end you will do better doing all of the research on your own. Most of these offices are staffed by volunteers, and they are not actual insurance agents. They are unbiased and do not receive any kind of compensation and therefore cannot push you in a particular direction to buy specific plans. All I can tell you is: BE PREPARED. Have the names and doses of your prescriptions ready, because those will be factored in when you are choosing a plan or plans according to a bunch of factors including how expensive your prescriptions will be with each plan. Also have a ballbark idea of how many primary care doctor and specialist visits you will have in the coming year.

This is the link for the master site; it will be necessary to find your own state and contact them to start the process of your search.

State Health Insurance Assistance Programs provides free insurance counseling and assistance to Medicare beneficiaries, their families, friends, and caregivers.

02/04/2023

Do you know of a who could use a little boost and deserves recognition? I follow this caregiver, and he has been tasked with being a judge for an award for caregivers. The link is in his bio. Click on his picture, then click on his name in bold and you will see the link! Also, follow this caregiver! It's so fun and informative to watch his videos.

Nominate a caregiver here: https://www.carewell.com/CCA2023/

02/03/2023

Did you know you can be disabled, work, and have medical assistance (also known as "Medicaid")? 45 out of 50 states in the U.S. participate in what is known as the Medicaid Buy-In Program, but every state's requirements are different. Some states require a minimum of 10 hours of work at minimum, and some don't require any at all. Many states don't count spousal income; some states don't count Social Security income. It's a mixed bag as to whether or not your state will count assets such as 401k accounts or savings.

Recently I told a gentleman about this; he was struggling to pay his bills and had recently taken on driving for Uber, but was floundering. I referred him to a few places but also made him aware of this particular caveat to Medicaid. This is something that is not publicized, but should be. So many lives would be changed for the better.

Please check out this link, where it's explained thoroughly, and contact your local state agency if you think you should qualify.

“I am bedridden and cannot work outside the home. However, when I am able I enjoy making jewelry and crafts in bed. I started selling them on Etsy. Then a friend told me that I would be consi…

02/01/2023

Are you "good" or "bad" at sleeping? How many hours do you average a night, and what helps?

02/01/2023

Do you have a favorite helpful device for pain that you recommend? Budget-friendly is a plus!