Interview April – Ellie Trinowski

Let’s meet our next Guest (with the gorgeous smile), Ellie Trinowski, and find out more about her:

EllieTrinowski

Introduce yourself and tell us a bit about you…

My name is Ellie Trinowski, and I live in Cleveland Georgia. I’m a wife, mother, and Grammie.

Before I stopped working, I was an event planner and coordinator for weddings in the Northeast Georgia Mountains. I worked with wineries and catering companies to create memorable events in picturesque settings. I loved my work. Now, I am a full-time grandmother of a talented little gymnast named Violet. I love this gig, too!

Chronic illness(es)/disabilities I have…

I have psoriasis(PsO), psoriatic arthritis(PsA), fibromyalgia, epidermolysis bullosa acquisita(EBA), and bullous pemphigoid(BP).

Beyond these autoimmune diseases, I have also survived multiple bilateral pulmonary embolism, and I live with a supraventricular tachycardia.

My symptoms/condition began…

I was 17 years old when the psoriasis begin. It wasn’t until I was 44 years old that I was diagnosed with psoriatic arthritis. Within the next year, symptoms of fibromyalgia began.

In the summer of 2017, I began realizing symptoms of a rare skin disease called epidermolysis bullosa acquisita. By the end of the year, I was diagnosed with bullous pemphigoid.

My diagnosis process was…

I have been very fortunate in the duration that it took for my disease processes to be diagnosed by medical professionals. The largest obstacle was the pain and limited mobility that came with PsA initially. It did take almost two years of suffering before I found the right doctor to diagnose me with PsA. Dr. Jatin Patel also diagnosed me with Fibromyalgia and recognized the symptoms of my rare skin disease. He was expeditious in getting me to a dermatologist, Dr. Carmen Julian, for evaluation. After several biopsies and blood work, I was diagnosed with EBA. Finally, it was determined that I also had BP at Emory in Atlanta by Dr. Ronald Feldman, who is the professor of dermatology at the clinic for blistering diseases.

The hardest part of living with my illness/disabilities is…

I do not appear sick. It is incredibly frustrating to have people judge me when I use a mobility cart in a grocery store and have people ask me why. I’m 50 years old. Once I had an elderly woman walk up to me, while I was on a mobility cart, and she asked me to get off because she needed it more. Of course, there was no way for her to know that I had a flare of all of my diseases at the same time. I was in a lot of pain, I couldn’t walk well and my skin disease was causing ridiculous itching. I was feeling frustrated and embarrassed because she did this in the middle of the pharmacy area of the store. I relinquished and gave up the cart to her.

A typical day for me…

Involves a lot of driving!

Now that I am a full-time Grammy, I drive my granddaughter to school, and I pick her up every day. I take her to gymnastics practice, and we might go to the park if there is no gym. She helps me pick up groceries and we head home.

If I am not flaring, I plan dinner most days, and if I’m doing really well dinner actually gets made! I try to do one thing that contributes to house cleaning every day, like vacuuming the living room or cleaning a bathroom. I find that things don’t get too out of hand that way. Violet always helps me out with chores, as well.

By early evening, I am typically on the couch because I’m toast! I will make it into my room, take my medicine and fall into my bed by 8pm, where I watch Netflix.

The one thing I cannot live without is…

The support of my family! I am blessed beyond measure! My husband works full-time and still does the laundry for me and anything else that I can’t handle that I would have done before my disabilities. My mother and father live right next door, and they are incredible when it comes to anticipating my needs. Dad gave me a cane when walking became difficult. Besides checking on me often, my dad brought a walker over before I admitted I needed it. My mother randomly shows up with leftovers or muffins, and a smile to cheer me up. My little Violet fetches things for me, and helps me in the kitchen, or when I need to tidy up the house.

Being ill/disabled has taught me…

Although I have never been one to judge, being disabled has taught me never to judge a book by its cover. You never know what somebody is going through. It has also taught me that life is short and that you must make the most of every day. After being admitted to the hospital on October 5, 2017, and being told I was lucky to be alive after blood clots had been found in both of my lungs, I tend to look at every day with different eyes. I’m incredibly grateful for my life.

It is not always easy on painful days, but it is imperative when you consider it might be your last.

What advice would I give someone recently diagnosed…

I would tell someone who was recently diagnosed with an illness or disability that they must stand up for themselves. It is so important to speak your truth and ask plenty of questions. Take notes and research responsibly. Instead of researching on Google, type in Google Scholar and utilize that platform for reliable research. Ask for a second opinion if necessary and get to know others who suffer from chronic illness. This gives you a sense that you are not alone and it is also a great resource to gather ideas to help yourself.

My support system is…

I have always believed that it takes a village to accomplish anything. As I mentioned my family is my number one support. I also value the social media community of chronically ill patients. I am grateful to the people who spend time sharing their experiences and knowledge with others to effect change in policies, as well as, suggestions for the lifestyle alterations we must make in our lives. Others who have lived our pain and challenges sharing their experience is a priceless resource I am grateful for!

If I had one day symptom/disability-free I would…

Go for a hike in the mountains with my granddaughter.  I used to push Violet in her stroller all over this beautiful place we live in. When she became a toddler, I would take her with me on hikes to wear her out and get a good nap out of her! I had no idea back then that this simple ritual would be taken away from me before I was 50 years old.

One positive of having a chronic illness/disability is…

The ability to effect change. Because of outlets like the National Psoriasis Foundation and the Arthritis Foundation, I can connect with others and use my voice to effect change in my state and even in my country. I am currently advocating for step therapy reform in the state of Georgia. I was able to bring my voice to this legislation by traveling to the Capitol on Advocacy Day and share my story with others. I love that sense of accomplishment and progress.

My social media links are:

https://www.facebook.com/grammiesdoublewhammy/

www.instagram/grammiesdoublewhammy

www.twitter.com/ellietrinowski

www.grammiesdoublewhammy.com

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Fibromyalgia and Pet Therapy

Fibromyalgia and Pet Therapy

pet-therapy

Fibromyalgia can be a lonely disease. Staying connected with friends and family becomes difficult when chronic pain and fatigue make it hard to get out and about like you used to. Sometimes, having a pet can make all the difference in the world!

Not only will a furry friend give you some companionship, but it turns out that pet therapy can actually be a pretty effective way of dealing with fibromyalgia pain. Here’s how it works.

What Is Pet Therapy

Pet therapy is a guided interaction between a person and a trained animal. It also involves the animal’s handler. The purpose of pet therapy is to help someone recover from or cope with a health problem or mental disorder. Basically, it involves using specially trained animals like cats and dogs to provide comfort to people who suffer from diseases like fibromyalgia, cancer, dementia, etc. The animals provide companionship while the patient pets or plays with them, reducing the amount of stress and pain they feel.

The biggest concern when it comes to pet therapy is making sure that the animals are well-trained and vaccinated. Because pet therapy is often done in hospitals, doctors want to be sure that a dog won’t get loose and run around contaminating the area.

With that being said, pet therapy, when done by a professional, is perfectly safe and can be very effective in treating fibromyalgia pain.


What Are The Benefits Of Pet Therapy?

Pet therapy builds on the pre-existing human-animal bond. Interacting with a friendly pet can help many physical and mental issues. It can help reduce blood pressure and improve overall cardiovascular health. It can also release endorphins that produce a calming effect. This can help alleviate pain, reduce stress, and improve your overall psychological state.

How Can Pet Therapy Ease Fibromyalgia Pain?

While the idea that simply petting a cat or dog can actually help your fibromyalgia pain seems a little far-fetched, there’s some basic science that backs it up. You see, petting an animal has been shown to cause your body to release lower levels of cortisol, which is the hormone linked to stress. And cortisol levels are directly linked to the amount of pain people with fibromyalgia feel.

And in addition to helping deal with your fibromyalgia pain, pet therapy also has other benefits. Depression and anxiety are both common among people with fibromyalgia, and it turns out that pet therapy can also help significantly with those symptoms. People who engage in pet therapy report consistently lower levels of stress and anxiety than people who don’t. There’s something about stroking a companion animal that lends a level of comfort to people who are suffering.

And taking care of an animal also helps people with fibromyalgia get more involved in daily life. Taking the animal on walks or playing with them in the park are great ways to coax yourself out of bed. And that’s especially true on days when your fibro pain makes you want to just close the curtains and go to sleep. So, a therapy animal can even be a link to the rest of the world when you have fibromyalgia.

So pet therapy can not only help you reduce your fibromyalgia pain, it can help you feel happier and less anxious.

How Can You Start?

Your doctor or therapist managing your treatment will administer pet therapy. A trained handler, often the pet’s owner, will take the animal to every meeting and work under your doctor or therapist’s direction to help you reach your goals. In most cases, the handlers work as volunteers. Discussion of proper pet handling is needed to ensure the safety of both the person receiving treatment and the pet.

Or if you prefer, you can also purchase your own animal that has been trained to be a therapy animal. There are lots of different breeders and trainers. And one should be able to help you find what you are looking for. A quick google search should be enough to find some in your area.

So maybe you’re the kind of person who hates having to leave their loyal pet behind. Well, getting them certified to provide therapy means that you can get comfort from them anywhere you go. And that can be a great thing when you’re suddenly struck by a fibromyalgia flare-up during your daily routine.

Animals make great companions, and it turns out that they might actually be great for treating fibromyalgia pain too. So if you’re tired of trying side-effect riddled medications, some alternative pet therapy may just be for you.

Outlook

The success of pet therapy depends on establishing realistic goals and expectations and meeting those goals. You and your doctor or therapist will establish these goals at the beginning of your treatment. You’ll also discuss how to reach those goals and how long it will take.

Your doctor or therapist will monitor your progress and help you stay on track to meet your goals. If your progress is slower or faster than expected, they may alter your treatment plan.

Fibromyalgia – In Tune With Our Bodies

I’ve been thinking lately of how lucky I am that despite the fact I live with Chronic Pain, Chronic Fatigue Syndrome, Fibromyalgia and Invisible Illnesses, I’m actually quite healthy. I know that sounds like an oxymoron, but I rarely come down with colds, I can’t remember the last time I had a flu or stomach bug or even when I could say I was “sick”. I try to remember to get a flu shot each year because I’m Diabetic, but it didn’t happen last year and so far this year, I haven’t made it to a clinic either. It’s also in my best interest to get one, because since having surgery for severe Gastric Reflux Disease in 2004, I am unable to physically vomit – if I get sick where vomiting becomes an issue, I have to go to the hospital and have a nasal gastric tube placed to remove my stomach contents. Not fun!!

As the old saying goes, aging ain’t for sissies! When you live with Fibromyalgia, you live with all sorts of “side effects”. This diagram displays some of the many “extras” a Fibromite can expect to experience:

FibroSymptomsDiagram

These are all common symptoms and it can be difficult to tell them apart from other illnesses, which makes it extremely important to be aware of your body and to note when something feels “off” or different than what is normal for you. We are generally quite in tune with our own bodies and are quickly able to determine when a new symptom appears that doesn’t fit in with our usual symptoms.

What happens though when you do experience something that you’re unsure of? Your first step should always be to see your Primary Health Care Provider anytime something comes up that is markedly different than your normal. It could be one of Fibromyalgia’s many symptoms, but it’s always better to be safe. I remember one time many years back when I started having severe pain in the lower left quadrant. It happened when I was living in Calgary and I had just finished a volunteer shift at the Calgary Stampede grounds. I’d eaten a corn dog and a few minutes later, was suddenly hit with terrible pain in my lower left side. I could barely walk but managed to make it on to the C-Train (the Lite Rapid Transit) and then called my husband to pick me up at the station to take me to the hospital. It turned out that a cyst that I didn’t know I had on my ovary had burst. I was prepared to put it down to something Fibro related and the only reason I got the proper diagnosis is because the pain was so bad, I went to the ER.

It’s easy to be dismissive of everything we feel and call it Fibro related, so we have to be careful not to fall into this trap. How do you tell the difference between Fibro related pain and something new or different for you? Here is a checklist to use:

  • Familiar or not – have you felt this same symptom before, or does this feel like something “new” to you?
  • Does it last longer than usual? This could potentially be a new situation that needs attention
  • It it more intense than usual? This could be the sign of a new problem
  • Is it in a new part of your body? This is more likely the sign of something new
  • Did it start suddenly or gradually? Gradual pain is more likely to be Fibro related.
  • Does something just feel “off” to you? Trust your instincts!

It’s recommended that everyone go for an annual checkup, but it’s especially important that you and your doctor stay in touch with how you are doing, outside of your Fibromyalgia. Don’t forget about the rest of your health.

Speaking of health, I want to share this new Health Alphabet. It may be helpful in future medical discussions, especially if aging is becoming a concern for you:

Screen Shot 2016-08-03 at 2.31.07 AM

Okay, a little humour never hurts, but when it comes to Fibromyalgia and changing symptoms, you do need to be careful not to overlook something that could have the potential to be serious. Always trust your instincts about how you’re feeling and see your doctor if something just doesn’t seem right. It’s better to be safe than sorry.

There is always hope

Living Well With Fibromyalgia

How do you Live Well with Fibromyalgia? When your body hurts all the time because of this painful condition, it’s hard to remember to do things like exercise and eat well, but these are critical components of staying well. First off, let’s look at what Fibromyalgia is.

Fibromyalgia is a condition that causes pain, fatigue, and tender points around the body. It can be hard to diagnose because many of its symptoms are similar to those of other conditions. It can also be hard to treat. That’s why it’s important to see a doctor who has experience treating Fibromyalgia. Medications are available to help alleviate some of the pain you might be experiencing, but there is no cure for the condition and a lot of what makes you feel better will come from the things you do for yourself.

 

symptoms-fibromyalgia-600
And what are those things? To start with, eat a well-balanced diet, make sure you’re drinking enough water to stay hydrated and try to do some gentle exercise every day.

Diet:

1. Aim for a well-rounded diet

Eating a balanced diet is a good idea for anyone, regardless of whether you have fibromyalgia. That diet should include fresh fruits and vegetables, whole grains, healthy fats, low-fat dairy, and lean protein, such as chicken or fish. Avoid unhealthy foods, including anything processed or fried, and excessive amounts of saturated fats. Also, limit the amount of salt and sugar in your diet.

2. Eat for energy

Fibromyalgia can make you feel tired and worn out. Eating certain foods can give you more energy. Avoid sweets, which will only give you a quick sugar boost. Your body will burn right through them, and then you’ll crash. Instead, eat foods that will give you more energy to get through your day. Combine protein or fats with carbohydrates to slow down their absorption. Choose fresh, whole foods high in fibre and low in added sugars, such as:

  • almonds, walnuts and other nuts and seeds
  • broccoli
  • beans
  • tofu
  • steel cut oatmeal
  • dark leafy greens
  • avocado
3. Go Vegetarian or Vegan

A few studies have looked at how eating certain diets affect fibromyalgia. There’s evidence from studies done that eating a vegetarian or vegan diet, which is high in plant antioxidants, might offer some symptom relief.

4. Maintain a healthy weight

Another benefit of eating a healthy diet is that it can help keep your weight under control.  People who had been on a weight loss program had less pain and depression, fewer tender points, and they slept better after taking off a few pounds. Studies suggest that weight loss can be an important part of fibromyalgia treatment.

 

Here are some of the best foods to eat for people with Fibromyalgia:

FOODS HIGH IN ANTIOXIDANTS:

  • Kidney beans
  • Dark chocolate
  • Pecans
  • Artichokes (boiled)
  • Cilantro
  • Berries (blueberries, cranberries, blackberries)

FOODS HIGH IN AMINO ACIDS:

  • Red meat: lean cuts of beef or pork
  • Poultry: chicken or turkey breast
  • Fish: halibut, tuna or salmon fillet
  • Dairy: non- and low-fat cheese, low-fat yogurt
  • Plant-based proteins: quinoa, tofu, soybeans

FOODS CONTAINING COENZYME Q10:

  • Organ meats (heart, liver, kidney)
  • Beef
  • Soy oil
  • Sardines and mackerel 
  • Peanuts

FRUITS WITH LOW GLYCEMIC INDEX:

  • Apples
  • Berries
  • Cantaloupe
  • Peaches
  • Citrus

All of these foods are great for the body whether you have Fibro or not so why not incorporate them into your diet and see the difference they can make. The healthier you are, the better able you are to fight Fibromyalgia or any other auto-immune disorder you might have.

Exercise:

Will exercise make you hurt more? Some muscle soreness is common after exercising in the beginning. But ultimately exercise should relieve fibromyalgia pain, not aggravate it. Try these tips: Start off small and build slowly. Massage or apply heat to sore muscles before exercise and apply cold after.

1. Keep it simple, doing activities such as walking, Aquafit (easy on the joints and muscles), or bicycling (stationary is fine).

2. Use light weights if you can to keep your muscles toned and at the very least, make sure to stretch several times a day.

3. There’s nothing worse for a Fibro body than to sit or lay down all day because your muscles stiffen up even more than usual and it takes even more effort to relax and loosen them. Do some simple stretches 3-4 times a day and work to expand on them as you get stronger.

So there you have it, some simple tips for Diet and Exercise that should help everybody but especially those with Fibromyalgia. Let me know your thoughts in the comments.

There Is Always Hope

 

Everybody's Bill Of Rights

Welcome back!
Did you know that as a Patient, you have a Bill of Rights, afforded to you under your Government?  It’s true! There are certain obligations your government has committed to meeting when it comes to your health care and I decided it was a good time to share those with you, as well as to write-up a set of Rights that we have as Patients for our Doctors, Nurses and other Medical Professionals. Are you ready?

Canadian Patients’ Bill of Rights*:

  1. You have the right to be fully informed about one’s medical condition;
  2. You have the right to be advised of the available treatment options;
  3. You have the right to be involved in treatment decisions;
  4. You have the right to information on the qualifications and experience of the health professionals from whom services are received;
  5. You have the right to receive considerate, compassionate and respectful public health services;
  6. You have the right to confidential communications with health professionals;
  7. You have the right to have access to and copies of personal health records and to have them corrected, if necessary;
  8. You have the right to have health records kept confidential and not used for any purpose other than public health services without written consent;
  9. You have the right to designate a person to exercise rights on the patient’s behalf if the patient is not able to do so because of a physical or mental incapacity; and
  10. You have the right to be informed of all rights and responsibilities under the bill and under other laws of Canada or a province with respect to public health services.

American Patients’ Bill of Rights**:

  1. You have the right to receive accurate and easily understood information about your health plan, health care professionals, and health care facilities. If you speak another language, have a physical or mental disability, or just don’t understand something, assistance will be provided so you can make informed health care decisions.
  2. You have the right to a choice of health care providers that is sufficient to provide you with access to appropriate high-quality health care.
  3. If you have severe pain, an injury, or sudden illness that convinces you that your health is in serious jeopardy, you have the right to receive screening and stabilization emergency services whenever and wherever needed, without prior authorization or financial penalty.
  4. You have the right to know all your treatment options and to participate in decisions about your care. Parents, guardians, family members, or other individuals that you designate can represent you if you cannot make your own decisions.
  5. You have a right to considerate, respectful and non-discriminatory care from your doctors, health plan representatives, and other health care providers.
  6. You have the right to talk in confidence with health care providers and to have your health care information protected. You also have the right to review and copy your own medical record and request that your physician amend your record if it is not accurate, relevant, or complete.
  7. You have the right to a fair, fast, and objective review of any compliant you have against your health plan, doctors, hospitals or other health care personnel. This includes complaints about waiting times, operating hours, the conduct of health care personnel, and the adequacy of health care facilities.
* http://publications.gc.ca/collections/Collection-R/LoPBdP/BP/prb0131-e.htm#c.%20%20Patients%E2%80%99%20txt
** https://web.archive.org/web/20050301090705/http://www.consumer.gov/qualityhealth/rights.htm

I’ve not done the Rights for other countries as most of my traffic comes from North America, but I’m sure a simple Google search using your country and “Patient Bill of Rights” would turn up something similar. I think this is good information for all of us to have and it’s all very reasonable.
Now the list for us as Patients:

  1. You have the obligation to treat your doctor and other medical personnel with respect.
  2. Be organized when you go to see your doctor – know the questions you need to ask and understand your doctor is limited to one or two concerns at a time. If you have more than that to talk about, book a double appointment. Don’t be an “oh, by the way” Patient.
  3. If you need refills of your prescriptions, let the office know when you’re making your appointment. This way, they can schedule that into the time you spend with the Doctor.
  4. Bring along a family member or trusted friend to help translate for you if English is not your first language. Don’t let translation issues cause your appointment to run overtime. The same goes for the hearing impaired – bring a sign language interpreter with you if needed.
  5. Find out what the policy is for missed or cancelled appointments with your doctor. Most cancellations given within 24 hours are fine, but if you need to cancel with short notice, you may have to pay for the full cost of the appointment. Every office varies, so know in advance what your obligations are.
  6. Be honest. Tell your doctor if you’re using recreational drugs – it can make a difference in regards to the prescriptions they need to write or tests they need to run.
  7. Speak up if you don’t understand something the doctor says. You have a right to clear and concise information so if you’re not sure of what the doctor is saying, ask for clarification. There’s no sense going home and then having to call the doctor’s office to ask what he meant. Your time in the office is your chance to have everything explained properly. If you feel your doctor is being dismissive of your symptoms, you have the right to ask for a second opinion.

What do you think of the Patient list? Is there anything you think is wrong? Is there anything missing that should be added? Tell me in the comments below.
Remember, we have as much of an obligation to be good Patients as our Doctors and Nurses et al do to be good practitioners of medicine. It’s a two-way street and only by working together will we be able to form a Patient Centred Care Team where those practitioners are working with us in partnership for our best health.
There is always hope.