Interview April – Jill Goodpasture

It’s time for our next guest, the delightful Jill Goodpasture!

JillGoodpasture

Introduce yourself and tell us a bit about you…

My name is Jill Goodpasture aka Fibroscoop. I have been writing my blog The Scoop on Fibromyalgia and Chronic Illnesses for a year now. I am a divorced mom of 2 teenage boys, 15 and 19. My oldest just left home so things have just changed around the house recently. I also have 3 furbabies and Sophie my support dog is frequently featured on the blog. She is just too stinking cute not to get on there occasionally.

Chronic illness(es)/disabilities I have…

I have Fibromyalgia, Early Degenerative Arthritis in my lower back and hips, Plantar Fasciitis, Narcolepsy, Sleep Apnea, Depression, and Anxiety.

My symptoms/condition began/My diagnosis process was…

In the spring of 2016, I started to have trouble with plantar fasciitis for a second time. I went back to the podiatrist who treated it the first time with cortisone shots. This time the shots didn’t work though. In fact, I had a inflammatory reaction to the shots and can no longer take steroids. I started seeing an Orthopedic Foot Doctor who put me in a boot for 6 months. During that time my back and hip started hurting. When the boot went away, the pain in my back and hip just got worse. When it persisted. I went to the orthopedic for my back and they said I had arthritis in my back and hips.  This was Oct 2016. In about August of that fall I had begun having body aches and nerve pain in my legs. This progressed to numbness and weakness.

The Doctors did nerve tests and MRI’s and finally said there was nothing wrong and sent me to PT. Well it so happens that I had the best PT in the world. She told me that it really sounded like I had something Autoimmune going on with my body. She knew my GP and told me to go talk to him. I did and he said he thought I had Fibromyalgia and maybe MS or RA. He did a thousand blood tests and when everything came back negative he sent me to a Rheumatologist and recommended that my Neurologist do a brain MRI. The Rheumatologist diagnosed early degenerative arthritis in my lower back and hips and fibromyalgia. She ran a bunch of tests that were negative and said we would keep our eyes on and keep checking for muscle conditions based on symptoms. My Neurologist did a brain MRI and there was no sign of MS but we recheck every 6 months.

I have struggled with depression and anxiety since middle school. I have seen a therapist and been on medication for about 20 years now. I like to think I have it pretty much “under control” but anyone with depression knows that is a myth. My therapist and I have a close working relationship and do phone visits weekly, and anytime I feel overwhelmed or that the pain is too much to handle I text her and we schedule extra visits as needed.

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

This is a tough one. I would have to say it is a toss up between seeing how it has affected my kids to the loss of the future I had all planned dreamed of for so long.

A typical day for me involves…

I generally wake up early, between 5 and 7. My son gets himself up for school so on the off chance I am able to sleep in, I can do so. When I first wake I lay in the bed and do a few stretches so that when I move to get up it won’t hurt so bad. Then I take my cpap off and put the hoses in the drawer and get up. I stand there and do a few more stretches. I make my bed up and set up a bunch of pillows to recline against and turn on my heating pads to warm up. I let the dogs out. Then I use the restroom and put my medicine bin on the bed so I won’t forget it. I make breakfast, coffee, and a big cup of Diet Dr. Pepper (my lifeblood). When everything is ready I go back to the bedroom and let the dogs in. I filled their bowls while I was in the kitchen.

I make myself comfy on the bed, turn on the morning show and eat my breakfast. Then I take my meds and supplements and do my journaling for the day. I might spend a few hours journaling if I don’t have anywhere to go. If I am going somewhere then as soon as the stiffness leaves my body I will get in the shower so I can sit on the bed for a while after to recover before the appointment. I always schedule appointments with this in mind. After the appointment or a few hours of journaling, around noon or one I will eat lunch if hungry and take a nap. This could be anywhere from one to four hours. When the kiddo gets home from soccer, thankfully transported by friends, we reheat leftovers, eat frozen dinners or he cooks usually. Then he usually does homework and talks to friends and showers til bed. I text with friends and sometimes journal or watch tv or something.

The one thing I cannot live without is…

My phone, it is my connection to the world outside my bedroom. My heating pads for pain control. I can’t decide between them.

Being ill/disabled has taught me…

Well, I think that my illness is trying to teach me patience and the ability to sit and relax, but I have not quite learned the lessons yet. I hate being in the bed all day doing nothing. I get impatient in SO many ways. I am a work in progress.

What advice would I give someone recently diagnosed…

RESEARCH and FIGHT. Research your disease and not just in the medical journals. Go to the blogs and the internet and read what people who have your condition have. Talk to people. You would be shocked once you start telling people how many people you know will have the same condition. Once you are armed with information then you fight. You fight with the doctors and the insurance companies and make sure you get the diagnoses, treatments, and medicines you need to get better.

My support system is…

My mother, my two kids, my friend Lori, and my ex-husband all provide supports in different ways. My best friend Traci has been there more times than I can count. My biggest support is my therapist who has went above and beyond making herself available by phone 24/7 to help when I am in pain or depressed or having major anxiety or whatever I need.

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

Be on the go from sun up to sun down. I would do something fun with my boys. I would go kayaking with my best friend. Go out to eat anywhere I want. Go see a movie. Just go, go, go. Like before I got sick.

One positive of having a chronic illness/disability is…

Hmmm…. This question is a tough one for me. I honestly cannot come up with a positive at this point. Maybe I will one day but right now in this journey I cannot.

My social media links are:

Blog:

https://scooponfibro.wordpress.com/

Facebook:

https://www.facebook.com/fibroscoop1/

Instagram:

https://www.instagram.com/fibroscoop/

Twitter:

https://twitter.com/Fibroscoop

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Interview April – Amber Blackburn

Let’s welcome our next guest, the adorable Amber Blackburn!

AmberBlackburn

Introduce yourself and tell us a bit about you…

Hi y’all! My name is Amber Blackburn, I am 33 (almost 34) and live in the middle of the United States.  I am a Registered Nurse by trade who is now a Chronic Illness Blogger and Advocate due the fact that my health has declined to the point that I can no longer work a standard job!

Chronic illness(es)/disabilities I have…

Way too many for someone my age!  I don’t even know where to start!! I have Systemic Lupus (SLE), Fibromyalgia, Bertolottis Syndrome, IBS, Anxiety, Depression, Endometriosis, Interstitial Cystitis, Secondary Adrenal Insufficiency due to long term steroid use, POTs, Debilitating Migraines (Some of which are hemiplegic). I think that’s all my conditions. Or at least the important ones. I will note that many of my issues alone are not disabling but in combination with all the others they can be.

My symptoms/condition began and My diagnosis process was

I am going to combine these two questions as it makes my response easier.

I was admitted to the hospital for a respiratory illness in February 2012. I was in the hospital for 5 days and they could never really figure out what was going on. So I was put on high dose steroids and antibiotics and was told that would probably fix it. Over the following months more symptoms started showing up beyond the respiratory issues like extreme fatigue, joint pain and joint swelling. They had done all kinds of labs up to this point and nothing had shown up. But finally my Pulmonologist did a repeat ANA and lupus markers in April 2012 and they came back very positive. The joint pain and swelling continued to worsen to the point that I had to buy bigger shoes and could hardly walk.

So I saw a Rheumatologist in the summer of 2012 and was diagnosed with Systemic Lupus and Fibromyalgia. But looking back my symptoms go back to the late 90s, early 2000s. During my junior year of High School in 2001 I was diagnosed with Mono and it lasted SIX months, which does not happen. So we are pretty sure part of that was actually my first lupus flare. My official Endometriosis and Interstitial Cystitis diagnosis was in November 2011 but those symptoms went back to 1998 when I started having such horrible abdominal pain that no one could diagnose and blamed it on IBS.
The hardest part of living with my illness/disabilities is…

If I am being 100% honest the hardest part of living with my illnesses is not always dealing with my health. Outside of the pain and fatigue when they get really bad, I find the hardest part to be the social aspects. This may sound silly but it’s super hard to have to stay home all winter because you pick up every germ despite wearing a mask and washing your hands. It’s hard having to cancel plans because you don’t feel good enough to leave the house. Also, trying to explain to those who aren’t sick why you are canceling for the third time this month is awful and hard on relationships. For me (and surely others) the social aspect is probably the hardest part of living with a chronic illness, outside of the obvious health issues.

A typical day for me involves…

A typical day for me starts with me waking up and rolling over and stretching. Trying to see what hurts and what doesn’t. Then spending the next 10-15 min actually getting out of bed because if I don’t do it slowly I’ll pay for it later. What happens after that depends on the day. If I have a doctors appointment or somewhere to be, I will start the getting ready process which can take 10 mins or an hour depending on how I feel, and how ready I need to be. As well as how many breaks I will need to take. If I don’t have anywhere to be I go straight upstairs to eat and take care of my dogs. In the morning I will always be checking social media and do my daily posts (that sometimes become 3 times a week posts) on all my platforms.

I will most likely be writing for my blog and posting if it’s a day to post. I try to write something for the blog everyday, that way I don’t feel rushed at anytime because I don’t have anything written. I may not get a whole piece written every day but I try to write something. There is always an afternoon “nap” if I can’t get comfortable and sleep than I at least lay in bed and rest. And the evenings are usually pretty chill. Generally speaking, I spend the evenings watching a show or reading a book. I take a shower and try to be in bed by nine. When I fall asleep will depend on what I did that day and how much pain I’m in. Everyday is different for me because I never know how I will feel. I always know if I did a lot the day before that the next day will be a day of rest. Honestly, I can’t plan to far in advance because I never know how I will feel.

The one thing I cannot live without is…

I hate to admit this, my phone.  I say this because I use my phone for everything. I use it for communication, with my friends, family and medical providers. I use it to help run the Chronic Illness Support Group on Facebook (Lupie Groupies) I started about 5 years ago which continues to grow. I use it to blog, to research, and post on social media. And I use it for my jobs, I sell Senegence Makeup as well as the Chronic Illness Symptom Tracker that I created for those with chronic illness.. For those reasons my cell phone is important to me.

Being chronically ill/disabled has taught me…

Being chronically ill has taught me so so many things. But I honestly think the biggest thing is that being sick has a way of showing you who your true friends (and family sadly) are. I know it sounds cliche but it’s very true.

What advice would I give someone recently diagnosed…

The biggest piece of advice I would give to someone who was recently diagnosed would be to find a support group!  No matter if it is online or in person, just find one. Your friends and family are good to talk to, but a support group filled with people in similar situations is imperative for anyone newly diagnosed as well as for those who have been ill for many years. A support groups gives you a place where you can share what is really going on and know that you are talking to people who will understand and won’t judge you.

My support system is…

My support group is AMAZING!! I have the most amazing family and group of friends a person could ever ask for. If I didn’t have my family I don’t know where I would be right now. I am truly lucky.
If I had one day symptom/disability-free I would…

Go to the beach or lake (really any body of water) and spend the day outside playing in the water without the fear of a flare.

One positive of having a chronic illness/disability is…

One positive thing about having a chronic Illness is meeting a group of wonderful and amazingly strong people whom you would have probably never met had you not gotten sick.

My social media links are:

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

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.

Gastroparesis Is A Slow Go

One of the many conditions I live with is called Gastroparesis. Gastroparesis means paralysis of the muscles of the stomach. Gastroparesis results in delayed emptying of food from the stomach into the small intestine. It can be minor or quite severe; in my case, I have a moderate degree of paralysis, and the food sits for 2-3 days before being processed further in the digestive system.

feat-gastroparesis

I wasn’t aware there was a problem at first as the usual signs of Gastroparesis are nausea and vomiting. I didn’t suffer from either of those, but I did experience a lot of bloating. It felt like whatever I ate just sat there in my belly forever.

Some of the causes for Gastroparesis include:

There are many symptoms of gastroparesis, including:

  • Heartburn or GERD
  • Nausea
  • Vomiting undigested food
  • Feeling full quickly when eating
  • Abdominal bloating
  • Poor appetite and weight loss
  • Poor blood sugar control

Some of the complications of gastroparesis include:

  • Food that stays in the stomach too long can ferment, which can lead to the growth of bacteria.
  • Food in the stomach can harden into a solid collection, called a bezoar. Bezoars can cause obstructions in the stomach that keep food from passing into the small intestine.
  • People who have both diabetes and gastroparesis may have more difficulty because blood sugar levels rise when the food finally leaves the stomach and enters the small intestine, making blood sugar control more of a challenge.

HOW DO THEY TEST FOR GASTROPARESIS

To diagnose gastroparesis, your doctor will review your symptoms and medical history. He or she will also give you a physical exam and may order certain blood tests, including blood sugar levels. Other tests used to diagnose and evaluate gastroparesis may include:

  • Barium X-ray: You drink a liquid (barium), which coats the esophagus, stomach, and small intestine and shows up on X-ray. This test is also known as an upper GI (gastrointestinal) series or a barium swallow.
  • Radioisotope gastric-emptying scan (gastric scintigraphy): You eat food that contains a very small amount of radioisotope (a radioactive substance), then lie under a scanning machine; if the scan shows that more than 10% of food is still in your stomach 4 hours after eating, you are diagnosed with gastroparesis.
  • Gastric manometry: A thin tube that is passed through your mouth and into the stomach measures the stomach’s electrical and muscular activity to determine the rate of digestion.
  • Electrogastrography: This test measures electrical activity in the stomach using electrodes placed on the skin.
  • The smart pill: This is a small electronic device that is swallowed. It sends back information about how fast it is travelling as it moves through the digestive system.
  • Ultrasound: This is an imaging test that uses sound waves to create pictures of body organs. Your doctor may use ultrasound to eliminate other diseases.
  • Upper endoscopy: This procedure involves passing a thin tube (endoscope) down the esophagus to examine the lining of the stomach.

I underwent the Radioisotope gastric-emptying scan. In my case, they wanted me off ALL of my meds first to make sure they weren’t contributing to the problem, so for 2 days prior to my test I had to quit my medications cold turkey. That included my meds for Fibromyalgia, my anti-psychotics AND my opioid narcotic for pain. Do you have any idea what going through withdrawal is like? It was horrendous. I had the shakes, the runs, I couldn’t eat or sleep, and for those 2 days, I alternated between thinking I was dying and wanting to die.

DAY OF TEST

On the day of the test, I went to the hospital to where the Nuclear testing is done. I knew that I was going to be eating an egg sandwich with a radioactive tracer in it and that tracer would be monitored through a series of special x-rays, but I explained to the nurse that everything I ate was immediately running right through me like water. She was so sweet…she “reserved” me a private bathroom, brought me my sandwich and told me to eat as much as I could while I sat there. Talk about embarrassing!!! It’s embarrassing writing about it!!! But, I managed just over 3/4’s of the sandwich, which she said was enough. She brought me into the x-ray room where there was a gurney to lay on, and then gave me a warm blanket.

The first pictures were taken every 2 minutes, so I just sat. Then they took them every 5 minutes apart, then 10 minutes apart, then 15, then 30 and finally 2 pictures 1 hour apart each. In between, I slept on the gurney, and my nurse brought me as many warm blankets as I wanted. She also brought me a cold wet face cloth for my forehead. When it was all over, I gave her a big hug and thanked her for being so kind. Then I took my medications asap!!!!

The tests showed that I have a moderate degree of low motility so my food sits in my stomach for a long period of time before moving on to the intestines. This explains why I always look bloated and pregnant. There are medications that can be taken, but I’ve asked my Doctor if we can just hold off and wait on that for now. This is more of an inconvenience than anything right now, and I just don’t want any more drugs in my system than I absolutely need. If the problem becomes hugely bothersome, we’ll revisit it, but in the meantime, I’ll just try to watch what I eat, drink more water and try to exercise a bit more.

If you’re experiencing symptoms of Gastroparesis, please make an appointment to see your family doctor as soon as possible. There are treatments available and you won’t have to put up with the suffering. Thanks for reading and remember…

There Is Always Hope

I Need You To Need Me

intimatecouple

I’m tackling a tough topic again today – intimacy when you live with Chronic Pain. If you remember the Cheap Trick song, it’s been on my mind lately:

I want you to want me.
I need you to need me.
I’d love you to love me.
I’m beggin’ you to beg me.
I want you to want me.
I need you to need me.
I’d love you to love me.

How do you enjoy an active and healthy love life when you’re in pain all the time. How do you appease your partner, who may not understand what it’s like to be in pain 24/7. Even when you’ve explained it a million different ways, when it comes to talking about sex, and how painful it can be, it’s not an easy conversation, no matter how long you’ve been a couple. And your sexual orientation makes no difference either.
Intimacy is the fuel that keeps a good relationship running. It encompasses so much more than just sex. Think about the different ways it’s defined in the Thesaurus:

  1. the state of being intimate.
  2. a close, familiar and unusually affectionate or loving personal relationship with another person or group.
  3. an act or expression serving as a token of familiarity, affection, or the like, to allow the intimacy of using first names.
  4. an amorously familiar act; liberty.
  5. sexual intercourse.

Intimacy is also about being close emotionally. When was the last time you went on a date? When was the last time you actually sat and talked to each other ABOUT each other? Not about work or the kids, but about the two of you and how you’re doing. What’s new, what’s real, what you love about each other? When was the last time you looked into each other’s eyes and said “I love you” and really meant it?
If you haven’t dated for a while, maybe it’s time you did. Here are 25 easy date ideas that might get you started in the right direction:

  1. Go furniture shopping at a thrift store
  2. Volunteer in your community
  3. Go Whale Watching together if you live in an ocean town
  4. Or go to the Zoo or Aquarium
  5. Go to the Library
  6. Play hide and seek in your local park
  7. Go to a Psychic together
  8. Go on a Scavenger Hunt
  9. Try Rollerskating at your local rink
  10. Host a dinner party
  11. Go to an Improv show
  12. Go Camping
  13. Host a Board Game party
  14. Have friends over and play board games
  15. Look at Adoptable Pets online. You know, for “someday”
  16. Do a classic Dinner and a Movie date
  17. Go Berry Picking or Apple Picking for whatever is in season
  18. Go to the beach if you have one
  19. Try out a local Bed & Breakfast
  20. How about Trivia Night at a local bar?
  21. Be a Tourist in your own City
  22. Check out your Local Theatre scene
  23. Work out the clues in an Escape Room
  24. Try out a Brewery Tour
  25. Go to Karaoke together and sing the cheesiest songs

So once you’ve reconnected and you’re ready for sex again, the Mayo Clinic offers these suggestions when you have a partner who lives with Chronic Pain*

Sexual intercourse is just one way to satisfy your need for human closeness. Intimacy can be expressed in many different ways.

  • Touch. Exploring your partner’s body through touch is an exciting way to express your sexual feelings. This can include holding hands, cuddling, fondling, stroking, massaging and kissing. Touch in any form increases feelings of intimacy.
  • Self-stimulation. Masturbation is a normal and healthy way to fulfil your sexual needs. One partner may use masturbation during mutual sexual activity if the other partner is unable to be very active.
  • Oral sex. It can be an alternative or supplement to traditional intercourse.
  • Different positions. Lie side by side, kneel or sit. Look in your library or bookstore for a guide that describes and illustrates different ways to have intercourse. If you’re embarrassed to get this kind of book locally, try an online book retailer.
  • Vibrators and lubricants. A vibrator can add pleasure without physical exertion. If lack of natural lubrication is a problem, over-the-counter lubricants can prevent pain from vaginal dryness.
*https://www.mayoclinic.org/chronic-pain/art-20044369

The key factors to intimacy are trust, respect and honesty. You need to be able to trust your partner won’t push you into something you’re not physically able to do and will respect your limits. There needs to be honesty between the two of you and with yourselves as well. Don’t use your Chronic Pain as an excuse to get out of sex if it really isn’t a problem…that’s not fair to your partner. If you’re avoiding sex for another reason, then be honest. If you’re mad at your partner for something they’ve done, then say so.

Tell them what and why and talk it out.

Don’t use your health to avoid other issues, because you’re simply breaking the trust and respect factors when you do that. You already have enough physical pain in your life – don’t add mental pain as well. Intimacy is too valuable a commodity to just throw away. Keep working on it and before you know it, you’ll be building and rebuilding the relationship of your dreams. And that’s no Cheap Trick!

There is always hope

What Does Science Say About CBD Oil For Migraines

Let’s welcome back John Martinez as my Guest Blogger today. John brought us information about using eyewear to help with migraines, and today, he’s talking about CBD Oil to help ease Migraine pain. Please note that all opinions expressed are those of the author but I do endorse them as well.

CBD Oil for Migraines – Effective, or Merely Hype?

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CBD oil has been gaining some steam in the media ever since its recent December 2018 legalization in the US.

Additionally, in the migraine community, there are loads of anecdotal evidence expressing the effectiveness of CBD and treating migraines. Is it all hype, or are these claims backed by scientific literature?

This article will get into the specifics of what CBD oil is, and whether it’s something migraineurs should investigate as something that could benefit them.

What Is CBD Oil?

CBD (also known as cannabidiol) oil is a naturally derived product from the plant Cannabis Sativa. Cannabis Sativa is categorized as a family of plants that contains two primary species: hemp and marijuana. The Cannabis Sativa plant also contains 120 other substances aside from cannabidiol. Most CBD oil is extracted from the hemp plant and contains no THC, which is the psychoactive chemical in marijuana. THC is the chemical that causes the feeling of being high. CBD oil is an isolated extract from the hemp side of Cannabis Sativa, not the marijuana side of the plant that contains THC.

Simply put, CBD is not marijuana and will not make you high.

Although CBD is derived from the same plant that has the ability to produce marijuana, CBD is non-addictive. A study that was conducted by the World Health Organization has proven, through a double-blind and randomized study that, on the scales of the Addiction Research Centre Inventory, there was no difference in addiction risk between CBD oil and the administered placebo.

Could CBD Oil Help Me with Migraines?

The efficacy of CBD oil to treat migraines varies from person to person. In a 2012 study, CBD was found to reduce inflammation and assist with chronic pain relief. CBD oil has minimal side effects compared to typical over the counter drugs and prescribed medications. Some side effects of CBD include appetite changes, fatigue, and diarrhea, which most of us would categorize as minor. One of the most appealing aspects of CBD oil is that it is not a pharmaceutically-engineered drug, but rather a natural avenue towards pain relief.

Unfortunately, there hasn’t been any studies specifically demonstrating the effects CBD has on people with migraines. There have been quite a few studies on marijuana as a whole and migraines, but not isolated CBD.

For example, there was a 2016 survey conducted by Pharmacotherapy which indicated that “medical marijuana” may reduce the frequency of migraine headaches – from 10.4 down to 4.6 per month. Even though marijuana contains CBD, we can’t attribute the results to CBD.

Overview of CBD Oil and Migraine Pain Relief

While it’s too soon to definitively say that CBD oil might be an effective treatment for people suffering with migraines, progress is being made.

All we know for sure is that there are some properties in CBD that help with inflammation and chronic pain management. And we also know that in medical literature, marijuana (which contains CBD) seems to be giving some people migraine relief.

Since it’s now legal on a federal level (in the US), and it’s a naturally occurring compound, it may be worth a try.

If you want to learn more about CBD, check out this article, CBD Oil for Migraines (2019) – Everything You Need to Know.

Remember, there is always hope

Saturday Inspirational For Fibromyalgia

New Series

I’m starting a new series called the Saturday Inspirational For Fibromyalgia. Each week, I’ll be posting something inspirational on Saturday to help raise our spirits and give us something positive to think about when it comes to Fibromyalgia and other Chronic Illnesses. I’ll generally start with a quote and then some words of wisdom afterward.

The best cruise in Australia and New Zealand tourism destinations

Today is the inagural post, so here the quote I picked to start:

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So often, when we are living in Chronic Pain, we tend to disasterize what we’re going through. Isn’t it nice to know that we don’t have to do that. As this quote reminds us, we don’t have to think the worst of things. Instead, we can see things in a more positive light, like hills instead of mountains or days that aren’t lifetimes.

Perspective

Keeping a clear perspective is a good lesson for all of us. Even on our darkest days, if we’re honest with ourselves, there are still good moments. We may be feeling bleak, but the sun is still shining. We may feel lost and alone, but our pets are still there for us, faithful and loving. It’s easy to see the emptiness from a viewpoint of pain, but we have the power to turn that view into something better. It’s a choice and wouldn’t you rather choose the beauty over the battered?

It’s not easy to stay positive when you live with chronic pain, but it is possible. Surround yourself with the things that bring you joy. Flowers, your favourite tea, a good book, soft music (or rock!)…whatever brings YOU comfort. Doing these small things for yourself is the start of making positive change in your life. Change the mountains to hills and see what other new changes you can make as well.

There Is Always Hope
#SaturdayInspirationalForFibro

 

Communication Skills

Ah, communication. What a tricky thing you are.

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When you’re a person living with Chronic Pain (PwCP), you get asked the same question quite frequently.

How are you?

And my standard response has always been, “I’m fine”. But what a lie that is, when clearly, I’m not fine, or I’d be living a different life. If I was fine, I wouldn’t be on disability, using a cane or a walker everywhere I go. If I was fine, I wouldn’t be in constant pain from my Fibromaygia, or my D.I.S.H. or my osteoarthritis in every joint, or experiencing the issues that go along with my Bipolar Disorder or my Diabetes Type 2 or my Trigeminal Neuralgia.

If I was fine, I wouldn’t have insomnia, and be up 22 out of every 24 hours, even after taking valium to help me relax and sleep. If I was fine…I wouldn’t be blogging about being fine.

So why do I respond that way?

People Don’t Want To Hear The Truth

People don’t want to hear the truth. It makes them uncomfortable to know that someone is hurting when there is nothing they can do about it. It makes them feel weird, to hear about someone else’s pain. They get antsy, thinking they’re in for a long diatribe about medical procedures and doctor visits as if they’re at risk for catching something themselves. They get nervous thinking they’ll hear about your emotional state. And to be honest, a lot of the time, people don’t really care how your feeling. They ask you how you because they’re polite. It’s the right thing to do.

So, I’ve decided to stop telling people that I’m fine. I’ve decided to come up with a new response, and that new response is:

“Part of me is great, and part of me is not so great.”

I’ve decided this gives people an out. If they don’t want to know more, they can simply reply “well, I’m glad part of you is great” and carry on with their own lives. If they genuinely want to know more, they can ask about the parts that aren’t doing well. That way, I know that they’re sincere about how I truly am instead of just making polite conversation.

I hope this doesn’t sound like I’m being sarcastic, because I’m not. I’m genuinely trying to help people be more comfortable around People with Chronic Pain and to find a way to make it easier to ask and answer that question of “how are you”. It’s a tough one because there is no one good answer. The PwCP doesn’t know if you’re sincere and we don’t know how much information you truly want. The last thing we want to do is bore you with the latest in our medical news, and trust me…it’s truly devasting for us when we think you’re interested and then we find out you’re not.

Showing Real Interest

I doubt seriously there’s any malicious intent in your question either, but again, it comes down to being polite and being interested. I would rather give you a polite answer and have you ask for more information if you really want it, but that comes with its own complexities as well. Suppose I say “I’m fine” and you hear “oh, she’s fine, I guess everything must be okay” when what I really mean is “I’m fine, but not really and I wish you would ask me more about my day and how I’m feeling”.  It’s a communication breakdown because I don’t feel I can ask for what I want in case you’re not really interested, and you don’t feel like there’s necessarily anything else worth asking about.

If you ask me if I’m fine though and I tell you “actually, I’m not doing so great”, how would you respond? If you’re simply being polite, now you’re stuck. You either have to listen to what’s wrong or say something trite like “oh, I’m so sorry to hear that” and change the subject. Neither of us leaves the conversation satisfied, so my response, even if it’s the truth, isn’t the best one either.

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Two small words with so much meaning behind them.  That’s why you’ll be hearing a different response from me going forward. I’m going to try my best to stay away from those two words to make it easier on all of us and start answering with my new response:

“I’m doing as well as expected given the number of health issues I’m living with.” That leaves it open to the person to expand on the subject if they wish or to simply say “oh, that’s good” and move on.

I appreciate your thoughts and comments about this subject. And for those of you without chronic pain, I hope you’re doing fine – really!

There is always hope.