Chronic Wellness

Here are the truths about IVIG. I’m Annette Leonard of https://www.annetteleonard.com find me on Instagram https://www.instagram.com/theannetteleonard

IVIG What is it? A blood product that's sold as a pharmaceutical product. IGg is a major component in our immune system. Intravenous immunoglobulin is used to treat a wide range of illnesses and conditions to bolster the immune system.

Who is it for?

For those of us with autoimmune diseases it is thought to overwhelm our immune systems and therefore, shut down our over-active immune systems.

How is it administered?

Are premeds required?

How long does a dose last?

How many donors are required for a dose of IVIG?

What does IVIG therapy cost?

Have you tried IVIG? For what condition? Has it worked? Did you have side effects? Leave a comment or ask a question.

**I have a new mini-course I'm finishing about how to unlock the power of your next doctor appointment*** the first 50 people get FREE enrollment. Sign up here https://www.annetteleonard.com/waitlist

This is the Chronic Wellness Podcast. I'm Annette Leonard, speaker, coach, and sick person who believes that my illnesses do not define me. If health is the absence of disease and wellness is the presence of wholeness, then no matter what your disease status, we can work toward your wellness, your wholeness.

Whether or not you are ever "healthy" on paper, you can be well. Join me and others on the path back to wholeness at AnnetteLeonard.com. Whether you are a person experiencing chronic illness or are someone who loves or serves people with chronic illness I have great resources here on this channel or on my website for you.

What are the dangers of mixed connective tissue disease? I’m Annette Leonard of https://www.annetteleonard.com find me on Instagram https://www.instagram.com/theannetteleonard

What are the main MCTDs?

What can happen if you have a MCTD?

These diseases can impact our wellbeing and threaten our lives in several ways. They are not curable, but they are sometimes manageable.

Because they are rare diseases, their treatment is under researched.

Do you have a MCTD? Do you wonder if you have a MCTD? What do you do to manage your MCTD? What do you do to increase your comfort with your MCTD?

**I have a new mini-course I'm finishing about how to unlock the power of your next doctor appointment*** the first 50 people get FREE enrollment. Sign up here https://www.annetteleonard.com/waitlist

This is the Chronic Wellness Podcast. I'm Annette Leonard, speaker, coach, and sick person who believes that my illnesses do not define me. If health is the absence of disease and wellness is the presence of wholeness, then no matter what your disease status, we can work toward your wellness, your wholeness.

Whether or not you are ever "healthy" on paper, you can be well. Join me and others on the path back to wholeness at AnnetteLeonard.com. Whether you are a person experiencing chronic illness or are someone who loves or serves people with chronic illness I have great resources here on this channel or on my website for you.

Mixed connective tissue diseases. I’m Annette Leonard of https://www.annetteleonard.com find me on Instagram https://www.instagram.com/theannetteleonard

These are rare diseases. There are three primary manifestations: lupus SLE, scleroderma, and polymyositis. We have connective tissues all over our body so when they break down the results can be disastrous.

While there are ways to test for these diseases -- they are often difficult/undiagnosed because they are so rare, doctors often overlook them or fail to screen for them. All mixed connective tissue diseases are autoimmune in nature.

Currently there are no known genetic links to MCTDs however, if you have a close relative with one, you are more likely to have one. Do you have a MCTD?

Here are some of the early symptoms to watch out for and report to your doctors if you are experiencing.

What questions do you have about MCTD?

**I have a new mini-course I'm finishing about how to unlock the power of your next doctor appointment*** the first 50 people get FREE enrollment. Sign up here https://www.annetteleonard.com/waitlist

This is the Chronic Wellness Podcast. I'm Annette Leonard, speaker, coach, and sick person who believes that my illnesses do not define me. If health is the absence of disease and wellness is the presence of wholeness, then no matter what your disease status, we can work toward your wellness, your wholeness.

Whether or not you are ever "healthy" on paper, you can be well. Join me and others on the path back to wholeness at AnnetteLeonard.com. Whether you are a person experiencing chronic illness or are someone who loves or serves people with chronic illness I have great resources here on this channel or on my website for you.

Considering mail order pharmacy? I’m Annette Leonard of https://www.annetteleonard.com find me on Instagram https://www.instagram.com/theannetteleonard

When I was researching this question, I found the 6-8 mail order pharmacies that I thought best fit my needs and developed a list of questions to call and ask each pharmacy. I put the answers in a spreadsheet to see things visually to be able to rate and rank the options. Prior to choosing a mail order pharmacy, think about what your deal breakers are: timeliness? shipping speed?

My questions were:

Do you auto-renew and send medications every 28 or 84 days?

When a script is out of refills, do you contact my doctor for a new prescription? In enough time for my prescription not to lapse?

What about Schedule II meds like Fentanyl and Norco that need a new prescription every time, do you fill those? How would you help me ensure there isn't a lapse between prescriptions?

How long does it take for you to get me my meds? (best- and worst-case scenario)

What’s the upside of using your service?

What’s the downside of using your service?

How do I transfer all my current prescriptions to you? How do you make that easy for me?

When can I reach you?

How do you contact me if there are problems or questions?

Do you fill prescriptions in 30/60/90 increments?

Anything else it would be helpful to know?

These are the pharmacies I included in my research: Amazon, Select RX, BlinkHealth, and Wegman's.

In the end, I didn't chose to use mail order. I found only one company who would send Schedule II meds, several told me that they were having availability issues with some of my medications, very few were reachable over the weekend and shipping took 7-10 days.

What about you? Are you doing this? Right now I only investigated options that take insurance, but it might be worth doing an examination of the mail order companies that don't. Has this worked out for you? What company are you using? Why do/don't you use mail order pharmacy?

I’m Annette Leonard of https://www.annetteleonard.com find me on Instagram https://www.instagram.com/theannetteleonard

About a year ago my pharmacy closed. I was ill-equipped for how disruptive this change was going to be. From none of my prescriptions transferring over automatically, to the new pharmacy hours, to how poor their communication is, there are a myriad of ongoing hassles that have been so frustrating in ways that I don't think many of my peers can relate to or understand.

I get one prescription by mail. It's made me wonder whether I should get all my perceptions by mail? I spent several months researching. I didn't have any knowledge about mail order pharmacy. For those of us on anything more than 2 meds a day, I think mail order is worth considering. Especially for those who have difficulty filling their pill box, it's worth knowing that there are ways for those to be auto-filled, pre-packaged, pre-dosed, pill packs.

There are a lot of variables to consider from price and availability to shipping times and other considerations. I'll talk about my exploration in my next video.

**I have a new mini-course I'm finishing about how to unlock the power of your next doctor appointment*** the first 50 people get FREE enrollment. Sign up here https://www.annetteleonard.com/waitlist

This is the Chronic Wellness Podcast. I'm Annette Leonard, speaker, coach, and sick person who believes that my illnesses do not define me. If health is the absence of disease and wellness is the presence of wholeness, then no matter what your disease status, we can work toward your wellness, your wholeness.

Whether or not you are ever "healthy" on paper, you can be well. Join me and others on the path back to wholeness at AnnetteLeonard.com. Whether you are a person experiencing chronic illness or are someone who loves or serves people with chronic illness I have great resources here on this channel or on my website for you.

I’m Annette Leonard of https://www.annetteleonard.com find me on Instagram https://www.instagram.com/theannetteleonard

About a year ago my pharmacy closed. I was ill-equipped for how disruptive this change was going to be. From none of my prescriptions transferring over automatically, to the new pharmacy hours, to how poor their communication is, there are a myriad of ongoing hassles that have been so frustrating in ways that I don't think many of my peers can relate to or understand.

I get one prescription by mail. It's made me wonder whether I should get all my perceptions by mail? I spent several months researching. I didn't have any knowledge about mail order pharmacy. For those of us on anything more than 2 meds a day, I think mail order is worth considering. Especially for those who have difficulty filling their pill box, it's worth knowing that there are ways for those to be auto-filled, pre-packaged, pre-dosed, pill packs. Often these pill packs even come pre-prepared with vitamins and supplements. For some, this might be such a valuable resource.

There are a lot of variables to consider from price and availability to shipping times and other considerations. I'll talk about my exploration in my next video.

Do you use a mail order pharmacy? Does that work well for you? How did you chose to do that? How did you decide which company to use?

**I have a new mini-course I'm finishing about how to unlock the power of your next doctor appointment*** the first 50 people get FREE enrollment. Sign up here https://www.annetteleonard.com/waitlist

This is the Chronic Wellness Podcast. I'm Annette Leonard, speaker, coach, and sick person who believes that my illnesses do not define me. If health is the absence of disease and wellness is the presence of wholeness, then no matter what your disease status, we can work toward your wellness, your wholeness.

Whether or not you are ever "healthy" on paper, you can be well. Join me and others on the path back to wholeness at AnnetteLeonard.com. Whether you are a person experiencing chronic illness or are someone who loves or serves people with chronic illness I have great resources here on this channel or on my website for you.

I’m Annette Leonard of https://www.annetteleonard.com find me on Instagram https://www.instagram.com/theannetteleonard

Every other week (or so) I host an episode of Chronic Wellness Conversations on IG Live where I interview an author, thought leader or sick people. You can find these interviews on my reels here https://www.instagram.com/reel/C8ctCR_vo_9/ or on Facebook, here https://www.facebook.com/reel/757349676310780

My most recent guest was Sonya Huber. She's a very talented author who wrote this article about sex and chronic pain https://www.oprah.com/health_wellness/sex-life-with-chronic-pain_1

We had a really engaging conversation on the topic.

One of her books is called "Pain Woman Takes Your Keys and Other Essays From a Nervous System." I have her permission to read an excerpt from an essay from that book called "What Pain Wants."

The whole book is filled with Sonya's memoir in essay form. If you're longing to see your pain journey represented on the page, this has my highest recommendation. Especially because the book is essays, it's manageable to read in short bursts. Be sure to tune in to my Chronic Wellness Conversations where you can see interviews with authors like Sonya and others.

You can find Sonya and her work at https://www.sonyahuber.com/

**I have a new mini-course I'm finishing about how to unlock the power of your next doctor appointment*** the first 50 people get FREE enrollment. Sign up here https://www.annetteleonard.com/waitlist

This is the Chronic Wellness Podcast. I'm Annette Leonard, speaker, coach, and sick person who believes that my illnesses do not define me. If health is the absence of disease and wellness is the presence of wholeness, then no matter what your disease status, we can work toward your wellness, your wholeness.

Whether or not you are ever "healthy" on paper, you can be well. Join me and others on the path back to wholeness at AnnetteLeonard.com. Whether you are a person experiencing chronic illness or are someone who loves or serves people with chronic illness I have great resources here on this channel or on my website for you.

I don't take my own advice. I’m Annette Leonard of https://www.annetteleonard.com find me on Instagram https://www.instagram.com/theannetteleonard

Transparent. Maybe it's easy to watch me on YouTube or listen to me on a podcast and hear me talk about ways to live our lives with chronic conditions and think I put all of my words into practice. However, I'm 100% human and struggle with all the same things you are.

Currently, I'm in the middle of a summer that I swore I wouldn't repeat. Yet, here I am. Last summer I made it to September in terrible shape. I promised to myself I do things differently this year. It starts innocuously. I schedule a few things, my wife schedules a few things, and then I think I need to stop and say my calendar is closed and only allow spontaneous plans as I feel up to them. Because now I feel like I'm at the mercy of my calendar -- like the show is running me.

I have either missed or showed up late to my telehealth therapy each of the past 4 appointments (even though I knew the appointments were happening in the morning). I was in full meltdown this morning about my upcoming calendar, I'm now in procrastination/dread cycles when friends reach out to me. [I acknowledge that I'm SO LUCKY that I still have people who want to see me after SO MANY years of illness and opting out!] But rather than getting back to them and saying, "I'm sorry, I can't." I put off returning their texts AND feel awful about it.

I'm not bringing this to you with a solution. (I suppose I need to go back and re-listen to my own episodes on boundaries!) It just felt important to be transparent with you about how I'm doing and to say, if this is something you struggle with, "me too."

At my infusion clinic, they only treat autoimmune patients. We've had numerous conversations about the auto-immune personality. With nurses who've had more than 90 years of combined experience treating autoimmune patients, the answer that keeps emerging is people-pleasing accommodators. Assuming that's true: I'm with my people. And, there's no time like the present to make changes. I need to text the friend back and say, "I'm sorry, however..."

I handle disappointment, why do I think my friends can't?! I do think that some of this stems from the fact that I'm afraid friends won't keep showing up.

**I have a new mini-course I'm finishing about how to unlock the power of your next doctor appointment*** the first 50 people get FREE enrollment. Sign up here https://www.annetteleonard.com/waitlist

This is the Chronic Wellness Podcast. I'm Annette Leonard, speaker, coach, and sick person who believes that my illnesses do not define me. If health is the absence of disease and wellness is the presence of wholeness, then no matter what your disease status, we can work toward your wellness, your wholeness.

Whether or not you are ever "healthy" on paper, you can be well. Join me and others on the path back to wholeness at AnnetteLeonard.com. Whether you are a person experiencing chronic illness or are someone who loves or serves people with chronic illness I have great resources here on this channel or on my website for you.

IT'S MY 5 YEAR ANNIVERSARY I’m Annette Leonard https://www.annetteleonard.com find me on Instagram https://www.instagram.com/theannetteleonard

June 18, 2019 was the first day I sent my voice out into the void from here in my guest room.

While some things have changed -- I used to record 5 days a week, many have not: I don't have sponsors, no fancy production or editing. In that 5 years, I've changed. The process of thinking, writing, and speaking about my illnesses has changed.

When I first started I just recently off the lung transplant list, and now I've increased my lung capacity and rarely use oxygen. There are ways that I have greater stability because I have learned to trust my body's signals.

Having these broadcasts and getting feedback from you is still what matters to me. I'm still too disabled to work. Having a connection with you is what matters to me. Maybe it's time to have an intro, but my ask of you:

What are the topics that have mattered to you?

What do you want to hear about?

What are the questions you want discussed?

Please subscribe, or forward this to someone. I have very few audio ratings so if you'd go to your audio podcast platform and find Chronic Wellness to give me a rating or review, I'd *really* appreciate it.

For those of you who have reached out to me, THANK YOU. Hearing from you matters a great deal to me.

**I have a new mini-course I'm finishing about how to unlock the power of your next doctor appointment*** the first 50 people get FREE enrollment. Sign up here https://www.annetteleonard.com/waitlist

This is the Chronic Wellness Podcast. I'm Annette Leonard, speaker, coach, and sick person who believes that my illnesses do not define me. If health is the absence of disease and wellness is the presence of wholeness, then no matter what your disease status, we can work toward your wellness, your wholeness.

Whether or not you are ever "healthy" on paper, you can be well. Join me and others on the path back to wholeness at AnnetteLeonard.com. Whether you are a person experiencing chronic illness or are someone who loves or serves people with chronic illness I have great resources here on this channel or on my website for you.

I’m Annette Leonard of https://www.annetteleonard.com find me on Instagram https://www.instagram.com/theannetteleonard

You finally heard that you've been approved for Social Security Disability. Treat yourself -- whether that's a call to a friend, a gf cupcake, or some other way that you do something good for yourself, take a moment to celebrate. Having this resource to support yourself, matters!

It's been a while since I crossed this hurdle, but to my memory: if you're legally married, you'll have to make some decisions about whether you'll take a greater amount each month or leave a spousal benefit after your death.

2 years after your EOD (your eligibility date) is when you become eligible for Medicare. There are a whole cascade of decisions you'll then have to make. For those of us who don't have other health care options, or who have been self-paying, or buying through COBRA, getting Medicare is a big deal.

Every year, SSD sends you an award letter. Keep that letter. Some years there will be a COLA (Cost of Living Adjustment) of a percent or two. Through my research I found its rare for people to get less than $1200/month in benefits and it's also rare for people to get more than $3000/month in benefits. If you're wondering what the average benefit is, that's what's typical.

That's the end of my series on Social Security Disability benefits.

If you have other questions I haven't answered, let me know below.

**I have a new mini-course I'm finishing about how to unlock the power of your next doctor appointment*** the first 50 people get FREE enrollment. Sign up here https://www.annetteleonard.com/waitlist

This is the Chronic Wellness Podcast. I'm Annette Leonard, speaker, coach, and sick person who believes that my illnesses do not define me. If health is the absence of disease and wellness is the presence of wholeness, then no matter what your disease status, we can work toward your wellness, your wholeness.

Whether or not you are ever "healthy" on paper, you can be well. Join me and others on the path back to wholeness at AnnetteLeonard.com. Whether you are a person experiencing chronic illness or are someone who loves or serves people with chronic illness I have great resources here on this channel or on my website for you.

You've been denied Social Security Disability, now what? I’m Annette Leonard of https://www.annetteleonard.com find me on Instagram https://www.instagram.com/theannetteleonard

You've FINALLY heard back and got the courage to open the envelope and learned that your application has been denied. You're disappointed, sad, angry and grieving. Take time to feel those emotions. Once you've taken a beat, get ready to get back to work.

First, make sure you haven't been denied on an eligibility technicality. Check out this website for more info:

https://usafacts.org/data-projects/disability-benefit-process

If you have met all the eligibility requirements, start an appeal. You must submit an appeal within 60 days. The first step is called "reconsideration." A claims specialist in your local Social Security office will review your file and may or may not approve you.

If you are denied again, the next step is appealing before an Administrative Law Judge. This is the step where most people I know have been approved for benefits. These hearings can be held in person or remotely. At this point (or perhaps prior) you might be wondering, "should I hire an attorney?" You can find a SSI Attorney easily in your area and online.

You don't have to pay for a lawyer up front, out of pocket. They will look at your file and if they think your case is strong enough, they'll take you on as a client. Then they will gather documentation, file paperwork on your behalf, get forms from your doctors, etc. to help build your case. Because they know the ins and outs of the system, it can be helpful and comforting to have someone walk you through the process and help you -- especially with a hearing or any further appeal. The attorney takes their fees out of the back payment you'd receive from Social Security, because of that you don't ever really "feel" the payment.

If you are denied at this stage there are two further ways to appeal. However, that means more and more time. In 2022, getting approval by Administrative Law Judge was 1.5 years. When you're talking about going without an income for this amount of time -- many face bankruptcy or worse. It's worth considering how you'll make ends meet as you embark on this daunting process.

Have you applied for Social Security? Did you use an attorney? Any tips or tricks you'd recommend to others about the process?

This is the Chronic Wellness Podcast. I'm Annette Leonard, speaker, coach, and sick person who believes that my illnesses do not define me. If health is the absence of disease and wellness is the presence of wholeness, then no matter what your disease status, we can work toward your wellness, your wholeness.

Whether or not you are ever "healthy" on paper, you can be well. Join me and others on the path back to wholeness at AnnetteLeonard.com. Whether you are a person experiencing chronic illness or are someone who loves or serves people with chronic illness I have great resources here on this channel or on my website for you.