“It’s hard…it’s hard changing your life. It’s hard picking up the pieces and starting all over again. It’s hard getting your mind together after you’ve gone through a life shaking experience (being a primary caregiver for someone; hearing a diagnosis you didn’t want; starting over again from a loss of any kind; being alone in a new place; wanting a friend.) But you can do hard. You can weather the storm. You will come through this.
Affirm to yourself every day ~ several times a day. No matter how hard it gets…I’m going to make it!! Stand up inside yourself and look yourself in the eyes and say “I can do hard!!” Exercise, pray, seek solitude, allow for periods of sadness…but know that you will get through this. Keep the faith; continue to work; and expect to make it through. You may not be able to change your circumstances or situation…but, you can change yourself! Hold on! You can do hard! You have GREATNESS within you!” — Les Brown
The young woman, Hiliary Hoffner, pictured above, has the same rare life threatening condition that I have. We almost lost her a year ago. She was hospitalized for 4 1/2 months. She fought hard. She’s a warrior. Today she’s doing quite well, engaged to the man of her dreams planning a wonderful future together!
When you’re going through hard times, remember, this too shall pass!
One of the greatest gifts my mother ever gave me was teaching me how to survive and thrive when medical care is needed – with advocacy, exercising my rights as a patient, second opinions, research – and good manners.
My mom never allowed a doctor to be in complete control of her medical care decisions just because s/he had ‘MD’ behind his/her name.
When she was diagnosed with breast cancer and told she had to have a mastectomy and start chemo and radiation right away, she asked for a second opinion. She also went to the library and checked out every book on cancer treatment in print, as it was the 70’s and we didn’t have Google. She checked out medical journals and researched her options. She learned that they had a great and successful cancer treatment in Mexico that was illegal in the U.S. She learned how to eat and juice to combat cancer. She jumped through hoops until she was able to obtain the Mexico cancer treatment. She beat breast cancer without chemo, without radiation, without mastectomy. And without losing a single hair or ever being sick! Not one day was she sick! She was healthy through it all! Go figure!
I was only nine years old, but this spoke volumes to me.
My mom advocated for many friends and relatives over the years, demanding the medical care they needed when healthcare providers fell short.
I learned a lot from her example. Valuable lessons.
Never blindly trust a doctor or nurse. They are only human and they make mistakes.
Q. What do you call someone who graduated at the bottom of their class from medical school?
The Nurse from Hell: My Mom to the Rescue
With my third baby, I had placenta previa, where the placenta is born before the baby and both mom and baby bleed to death in seven minutes. I was scheduled for a c-section with orders to go to the nearest hospital by ambulance for an emergency c-section should my water break. And so my water broke and we called 911 and went by ambulance to the nearest hospital where the nurse wouldn’t allow me to see a doctor! I explained that I had placenta previa and needed an emergency c-section and she told me I would be giving birth naturally. Yes, she was the dingbat nurse from hell. And I was in no position to stand up and walk out and catch a ride to the next closest hospital. I had to stay prone. I was alone as my husband had to wait for our childcare provider to arrive before he could join me at the hospital. So I called my mom. It was around 4am. She was sound asleep but she managed to get dressed and to the hospital in less than a half-hour. And she advocated for me and quickly convinced those dingbat nurses that it was in their best interest to have me transferred by ambulance to a hospital that would provide proper medical care for me and not put my baby’s life and my life in danger for one more minute.
Had I listened to that nurse, my third and fourth sons and I probably wouldn’t be here.
My mom was the one to have in your corner if you needed an advocate for your medical care. But she also taught me how to advocate for myself and I’ve had to many times over the years.
They Told Me to Abort
When I was pregnant with my twins, I was told the pregnancy was causing my breathing issues and I needed to abort right away. But I had the breathing issues before I was pregnant so the pregnancy didn’t cause the problem and I surmised that an abortion wouldn’t solve the problem. They also said I needed to have a tracheotomy right away although my breathing crisis had passed a week prior and I was now breathing ok. I just got up and walked out of the room. Didn’t say a word. Just walked out. As I was walking away, I heard my husband tell those doctors, “well, looks like that’s a no, bye now.” I didn’t even say good-bye.
Had I listened to those doctors, my twins wouldn’t be here.
Another time I was hospitalized for days and never saw a doctor! They starved me everyday for procedures that were cancelled everyday. I asked to see a doctor everyday and they never came! I would call for a nurse when I needed a breathing treatment and wait forever while in respiratory distress. I was going downhill. I finally called my mom and my husband to come bust me out. I went to another hospital and got the medical care I needed.
And then last year my trachea was both collapsed and stenosed (inflamed and narrowed). The collapse was more than likely due to the years of stenosis and the hospital I was in wouldn’t do a procedure I needed called a tracheal dilation and insisted instead on a permanent tracheostomy which would render me mute for life. But I questioned them and I researched from my hospital bed thanks to Google and my smart phone and I made phone calls and sent emails to other doctors in other hospitals and got second and third opinions and there was a much better option –the dilation– and the good folks at Cleveland Clinic said, “we got this! Come to us!” But a psychopath quack at my current hospital lied to me and told me that the doctors in Cleveland agreed that tracheostomy/muteness was my only option of walking out of the hospital alive! But I had the emails from the doctors in Cleveland saying they could do the dilation and no way should I have the tracheostomy! I read the emails to them. You could have cut the air with a knife. So I busted outa that hospital with the help of my husband and two of my sons – and one son flew with me to Cleveland where they promptly fixed he problem and provided excellent medical care – after begging these other doctors to fix it for over two decades – before it was so severe.
I can breathe well now! And I can still talk!
Had I not done my research, had I not sought more opinions, and had I listened to those doctors, I wouldn’t be able to talk and I’d have a permanent tracheostomy.
Recently, a nurse called to schedule gallbladder removal surgery for me. But I questioned her and as she looked over the doctor’s notes, she gushed an apology, she had read the doctor’s notes wrong! She’s a good nurse, but she’s human, she made a mistake! I’ve been symptom-free for over a year, not needing my gallbladder removed!
Had I blindly gone along and not asked questions, I would have had the unnecessary surgery and lost an organ.
Ask questions! Advocate for yourself!
I used acupuncture and herbs to resolve my gallstone issues!
Another Example of Human Error
My latest example of why it’s so important to advocate for yourself. I’ve started back at physical therapy because I have adhesive capsulitis, aka frozen shoulder, thanks to medication side effects. So my first few sessions, I felt like they weren’t really addressing my shoulder issues, so I spoke up and found out my order was written wrong! Somehow my shoulder issues weren’t on my requisition. So she worked on my shoulder for about a half-hour and added exercises specific to my shoulder issues. And my shoulder was much improved after just one session! Speak up when things seem amiss.
Had I not said anything, my shoulder issues would have continued to go unaddressed.
And it’s Important to Teach our Kids to Advocate for Themselves
My youngest son had a skiing accident which required stitches. The ski lodge medic butterflied it. He skied all day with his injury. And at the end of the day when he got his stitches at an urgent medical care facility, he advocated for himself, refused unnecessary vaccinations and educated the nurses on vaccinations and the laws regarding vaccinations, which he knew more about than they did! Every time I felt like I needed to speak up and defend his rights, he did it himself! And he did it very respectfully. He informed them that he would need to research the vaccine before allowing it. At barely fifteen years old! I was so proud of him!
Mom or dad wont always be there, it’s important that our kids know their medical care rights and how to advocate for themselves.
Firing Medical Professionals
There’s been times that I’ve been in the hospital and had to fire a doctor or nurse or respiratory therapist due to shoddy care.
Refusing Tests and Procedures
I’ve questioned and refused unnecessary procedures and medications. Including some blood draws because every four hours isn’t always necessary, sometimes it is but not always, and if you don’t ask, they just do it. I want an explanation.
Know your rights
It’s your right to refuse anything when you’re a patient.
It’s your right and responsibility to ask questions.
It’s your right to fire folks and have them replaced.
It’s your right to second and third and even more opinions.
It’s your right to contact doctors at other hospitals.
It’s your right to leave a hospital without discharge.
It’s your right to ask to be transferred to another hospital – they may not comply – in which case you do it yourself with the help of friends or family.
It’s your right to request an advocate.
There are advocate agencies, but they are usually pretty pricey. But you can call around your area. Some hospitals provide professional patient advocates and you can request one, contact patient services. If a professional is unavailable and you’re struggling with advocating for yourself, call a friend or family member.
Last year I was hospitalized 200 miles from home and there were meetings with doctors that required I have an advocate other than myself, my son was living in the area and got off work several times to attend these meetings with me.
When there are “meetings“ you definitely need an advocate other than yourself.
I would highly recommend recording said meetings and other talks with doctors because it’s hard to remember everything and it’s in your best interest to do so. All smart phones have “tape-recording” capabilities.
Take notes and write down questions to ask when the doctor/team of doctors come in. Ask for paper and pen.
Healthcare Providers as Advocates
Many times my nurses, respiratory therapists, and doctors, have stepped up to the plate and advocated for me when things were amiss! Love them!
Friends and Family
If you have a loved one in the hospital, try to be there as much as possible to advocate for them. And keep them company! It’s great to have a friend or family member advocate for you.
“One thing I tell people is if you have a sick family member, don’t leave them alone in the hospital. Even when there are visiting hours where you’re supposed to go home, I’ll tell people, find any way that you can to stay anyway, because when you’re sick is the last moment when, as a patient, you’re able to fend for yourself.” – Dr Atul Gawande
Be at the hospital with loved ones as much as possible. When you have to leave, try to arrange for someone else to be there. Attend doctor appointments with loved ones who need an extra set of ears or advocacy. For follow-up appointments after a hospitalization, having an extra set of ears or someone who can help describe your symptoms/progress is valuable.
And when there’s no one who can advocate for you, you absolutely must advocate for yourself. I’ve had to many times. Remember to hit record when talking to doctors.
I’ve also learned to ask for stuff they don’t prescribe or offer. Such as vitamins and probiotics! They don’t prescribe them but if you ask, you get them! If they stock them.
Most hospitals have items to borrow or check out such as laptops – but if you don’t ask, it’s not always offered. Ask for volunteer services or patient services. They’ve brought me coloring pages and markers! (I’ve included links at the end for a wonderful adult coloring book, good to take with you, or take to a loved one in the hospital, they help pass the time and really help alleviate anxiety!) They have books and magazines and other things to make your stay more pleasant. But you have to ask or it seems they don’t show up until you’re being discharged. They are volunteers so be kind.
And When You Have Good Care, Say Thank You!
My nurses, doctors, housekeeping staff, food service staff, et al, are amazed when I thank them! They rarely get thanked! Are you kidding me?! Another thing my mom taught me was good manners! Good manners and treating my medical care providers with respect has gained me private rooms, extra pillows, extra chairs for my visitors, over the limit of visitors, musician visitors and other perks!
I had a nurse tell me I was bumped up on the waiting list and got a private room because I was such a pleasant and nice person. One nurse even referred to me as ‘lovely’ and we are friends to this day! I’ve had great nurses request me because I’m respectful and friendly and I say thank you. It’s really nice to have a great nurse request you instead of getting the luck of the draw nurse.
Show some respect and appreciation for these people who devote their lives to caring for others. They want to be at home with their families or outside enjoying nature, but they are devoted to helping others achieve health and wellness. It’s not just a job, it’s their calling, they are worth their weight in gold and they deserve our gratitude. I greet them when they come in and thank them when they leave and strike up conversations whenever I can. I even thank phlebotomists… they’re just doing their job in an effort to help you.
So I want to pass along to you the valuable gifts my mother passed along to me and I’m passing along to my kids: Patient self-advocacy, knowing and exercising your rights, the importance of research – and second, third, fourth opinions. And saying thank you!
Here’s to surviving as a patient ♥️
Reference: My mom, Bonnie Purington Conlow Graig, in loving memory, thanks mom ♥️
Autoimmune diseases affect one in five families. How we eat is crucial.
This is a list I compiled when I was in college, pursuing my degree in holistic nutrition. The assignment was to compile a “new list of super foods,” so I researched and chose foods specific to autoimmune and vasculitis diseases. I’ve updated it to include the newly discovered superfoods that benefit autoimmune conditions.
Note: These are in addition to the well known nutrient-dense superfoods, such as coconut oil. (I’ve included some links to some at the end. They were the best deals I found on some of my favorite brands!)
To top off the list: Bone Broth! (Link at end)
Recent research reveals that bone broth is an autoimmune superfood! But it can’t just be chicken or beef or fish broth, where the bones are cooked quickly, the bones need to cook for at least 6 hours and preferably longer to reap the benefits! Adding a couple tablespoons of organic raw vinegar helps extract all the beneficial nutrients! Great Grandma was onto something back in the day with taking all day or even a couple days to make that good old fashioned chicken noodle soup which is scientifically proven to fight off colds and flus as well as autoimmune diseases and many other health benefits! Run of the mill canned chicken noodle soup will not provide the outstanding level benefits as the bones are not cooked long enough. It has to be labeled ‘organic bone broth’ – or make your own. Watch for the recipe!
2. Glutathione – the mother is all anti-oxidants (link at end)
Plays a crucial role in immune function. Essential for preventing and fighting autoimmune disorders.
Studies have shown that people who have autoimmune diseases are deficient in glutathione.
Note: This is important to know if you have an autoimmune disease and you have children as autoimmune diseases run in families, so make sure your children have sufficient levels of glutathione in an effort to prevent the diseases.
When glutathione is deficient, all other antioxidants and vitamins are deficient as a result, as glutathione is necessary for their absorption.
Until now glutathione supplements fell short as it’s hard to absorb, but now we have the new ‘setria glutathione’ which is readily available and absorbable. Read the label and make sure it’s “setria.” (I’ve included a link for this type of glutathione at the end.)
Foods rich in glutathione include: spinach, potatoes, asparagus, avocado, squash, okra, cauliflower, broccoli, walnuts, garlic and tomatoes;
3. Fermented Foods
Sauerkraut, kimchi, Greek yogurt, kombucha, pickles, miso, raw unfiltered apple cider vinegar, and other fermented foods. The fermentation creates probiotics, which greatly benefits gut heath! Improved gut health equals improved overall health! Autoimmune diseases and other health issues have been linked to gut health, so heal the gut with fermented foods and heal the immune system! Fermented foods also help boost and maintain energy levels.
Note: Raw unfiltered apple cider vinegar is a fermented food. BACV (Bragg’s Apple Cider Vinegar) or similar brand – must be raw, organic, unfiltered, ‘with the mother.’ – Reduces moonface caused by steroids, increased energy, long list of health benefits; improves gut health and ph balance, and so many other health benefits. 1-3 T day can really help overcome fatigue as well as many other health issues! No matter what your level of health is, it’s beneficial.
How to consume raw unfiltered apple cider vinegar, such as Bragg’s:
1-3 T/day, diluted in water, juice or Emergen-C. Add raw local honey if needed. I usually add 3 T to several ounces of water and sip throughout the day. But mixing with Emergen-C is the most palatable, IMHO, and it will give you quick energy without a letdown!
4.High Quality Organic Undenatured Whey Protein
It increases glutathione production, immune system support, promotes weight loss, improves cognitive performance, reduces blood pressure, controls appetite. Whey protein contains all the amino acids the body needs in the best possible balance (also alleviates the sweet-tooth!);
5&6. Sockeye Salmon & Sardines (in it’s own oil)
High omega-3’s to fight inflammation, increased brain function, combats depression and mood swings, good for memory, and blood sugar control. Also good for kidney health.
Note: I choose sockeye salmon over all others because: “it is never farmed, it’s always wild, from the pristine seas of Alaska, where they feed on omega-3 rich krill and the waters are cleaner than most anywhere on the planet. And sockeye do not live as long as other species of salmon so therefore do not accumulate the toxins that other choices may accumulate.” – Dr. Andrew Weil;
7&8. Maitake and Shitake Mushrooms – For counteracting fatigue and nausea caused by chemo drugs, as well as help prevent some of the damaging side effect of chemo drugs. Immune system support. Available in pill/capsule form;
9&10. Black and Green Tea – Black for the quick repair of damaged blood vessels; Green for reducing the risks of blood clots, strokes and weight gain and improving mood and increased relaxation. Both teas are anti-inflammatory. They are packed with powerful anti-oxidants;
11. Yerba Maté(link at end)- Has all the benefits of green tea tenfold. Plus bone Health. And a great Fatigue Buster/Energy Booster;
12. Rosemary – Fights inflammation of the respiratory system! Protects the liver, anti-biotic, anti-viral, improves brain function, memory, and disease of the head and brain;
13. Thyme – Anti-inflammatory, aids digestion, long history of relieving respiratory problems, including cough and bronchitis;
14. Avocados – Anti-inflammatory, anti-cancer, good for eyes and skin, contains glutathione;
15. Cherries – Anti-inflammatory, good for respiratory health and allergies;
16. Raisins – Bone health, anti-inflammatory;
17. Turmeric/curcumin – Anti-inflammatory, anti-cancer, anti-diabetes, protects the liver, long list of health benefits, including pain reduction (take with black pepper to increase absorption, most supplements include pepper – pepper improves absorption of all nutrients);
When you seek medical attention with your local doctors and they can’t figure out what’s wrong or how to help you – this is often the case for many people seeking answers and resolution for their health issues.
Part 1: Why Can Your Doctor Not Help You?
Part 2: Higher Level Care
Part 3: Making the Most of Traveling for Medical Care
Part 4: Medical Travel Financial Assistance Resources
When you have mysterious symptoms or a serious, chronic, or rare disease, you often must travel to higher level specialists and university/research medical centers or specialized clinics.
I’ve flown out of state twice for medical care. I continue to drive five hours round-trip for my higher level care.
Part 1: Why?
Most local doctors, specialists included, do not usually have expertise in complicated, hard to diagnose, or rare disorders. Not every disease is covered in medical school.
Part 2: Higher Level Care
As an example, the chronic illness that I have, vasculitis, is most often treated by a team of specialists, as it is systemic, affecting many different organs. At the helm of the team is usually a rheumatologist, but not all rheumatologists specialize in or have any experience treating vasculitis.
Among specialists in every field, only a percentage have expertise in certain complicated and rare disorders. I call them higher-level specialists. They provide my higher level care. They studied certain conditions/diseases/disorders in addition to their specialized MD requirements.
Most rheumatologists specialize in arthritis. But higher level rheumatologists specialize in various systemic rare diseases as well.
Higher level specialists are often professors. In order to receive the care we require, we often have to travel to the university medical centers or specialized clinics where they research, teach, and practice.
Local doctors will sometimes team up and consult with your higher-level specialists regarding your care. It’s wonderful when your local doctor joins your medical team to monitor your health between your distance appointments!
But in the beginning – for diagnosis and treatment – and during flares, we often must travel to the facilities and higher-level specialists who can effectively help us get better.
If you are undiagnosed and your local doctors are unable to diagnose or help you, go to the nearest university/research medical center.
Google the higher level/university/research medical centers and/or specialized clinics in your state, or closest to you. But keep Cleveland Clinic in mind. More on Cleveland Clinic below.
Part 3: Making the Most of Traveling for Medical Care: The silver lining!
When you have to travel to appointments and your health allows, take advantage of what the area has to offer, especially if children are involved: parks, beaches, museums, ethnic/specialty restaurants, specialty shops, etcetera.
I often had to take my kids out of school for my distance appointments and always turned it into an adventure or field trip!
A few tips for traveling with children
For those long distance trips with children, entertainment in the car or on a flight, and in waiting rooms, is a great way to optimize happy travels -for all- and with today’s electronics, it’s easy. But there’s also the old fashioned travel games such as magnetic chess and checkers and age appropriate toys. And Books! Each child with their own backpack full of entertainment, snacks and water bottles helps with those long trips. Don’t forget pillows.
When I went to Mayo Clinic in Arizona, we did a road trip between appointments! I had appointments the end of one week and beginning of the next week so over the weekend, we had three days to kill, we rented a car and saw the Grand Canyon and other fabulous sites and experienced some of the local culture and history that area has to offer! We packed a lot into those three days! We even surprised our boys with a Diamondbacks-Yankees Game!
And if you find yourself at the Cleveland Clinic – which I highly recommend if other doctors and medical facilities fall short, no matter where you live, go there. People from all over the world arrive there everyday to get the help they can’t get anywhere else. I was one of them. Go in though the ER/ED if you need to.
When you get out, take in the Rock and Roll Hall of Fame, and treat yourself to some Buckeye Balls! Ohio has its own state candy! And they’re wonderful! They might carry them in the Cleveland Clinic Gift Shop by now, on my request! And If you have time, Niagara Falls is roughly 3 1/2 hours away! Go! Schedule an extra day! Check it off your bucket list! If it’s out of the question, take in the zoo or the R&R Hall of Fame and Malley’s for some wonderful buckeye balls! The R&R Hall of Fame is great and they sell discount tickets at the Cleveland Clinic! Or take in a game: Indians, Browns, Cavaliers!
Or take advantage of the free stuff like parks, museums, or other venues unavailable near home! Google what’s available.
One of the coolest free venues we ever did were ghost towns! Fun, interesting, and very cool, for all ages.
Bonus: travel is scientifically proven improve your health! And it’s enlightening and educational which is silver lining especially for children. Watch for more on the health benefits of travel in a future blog post.
Part 4: Medical Travel Financial Assistance Resources
Some insurance providers cover gas expenses or shuttles for distance appointments, but they don’t tell you, call and ask!
If you’re hospitalized and need to be transferred to a specialty clinic, Cleveland Clinic provides global transport. They have their own fleet of medical transport aircrafts. Your insurance may cover it. Contact the Cleveland Clinic Medical Transport Department.
Transfers from local hospitals to upper level hospitals in your own state are often covered by insurance. But if not, contact the National Patient Travel Center, above, or google for resources outside the US.
Go Fund Me is another resource.
Get the care you need. You may have to travel. But you deserve proper medical care ♥️