Every Journey Matters – Camille

To coincide with Scleroderma Awareness Month and this year’s theme, I’ve been sharing stories from a few people that I’ve come to know over the past few years or so throughout the month.

Because “Every Journey Matters!”

Each person has expressed different aspects of their scleroderma journey as it is widely recognised that each person’s experience with scleroderma is unique, and no two cases are the same.

So far we have heard from; Diane in Wellington, New Zealand.
Michael (AKA the Sclero Guy) from the United States.
Helen from Tāmaki Makaurau, Aotearoa (Auckland, New Zealand).

I’m sure that you’ve enjoyed reading about how each person got diagnosed, and the different symptoms and treatments that they have gone through and the ongoing challenges that they face.

Today we meet Camille from the United States of America who was diagnosed in 2021. She is a Scleroderma Warrior from Wisconsin who I met while training as a Peer Mentor.

She is extremely passionate about providing support and encouragement to others that have been diagnosed with this rare, incurable disease. She is the Wisconsin lead volunteer for the National Scleroderma Foundation’s Upper Great Lakes Chapter and has helped develop the Peer Mentor Plus Program and the monthly Lunch & Learn Program.

She writes; In the fall of 2020, I began experiencing scary health symptoms including shortness of breath, Raynaud’s episodes in my hands, and extreme fatigue. By the end of that year, I had developed numerous ulcerative wounds on my fingers. My face, hands, and feet had become extremely swollen. And I had intense nerve pain in my hands.

By the beginning of 2021, my symptoms had progressed so rapidly and severely that my husband Denny and I decided to travel to the Mayo Clinic for a second opinion and treatment options.

It was a terrifying time and I’ll never forget my meeting with the Rheumatologist when she told me; “you have Scleroderma. It’s a progressive disease, but we don’t have a way to predict how it will progress for you.
And there is no cure.”

Scleroderma is a rare autoimmune and rheumatic disease affecting approximately 300,000 Americans. It causes the connective tissue in the body to tighten and harden. This in turn can cause vascular degeneration, tightening and thickening of the skin, chronic pain, joint stiffness, muscle weakness, mobility issues and fatigue.

It can also cause fibrosis and damage to internal organs, including the lungs, heart, kidneys, and gastrointestinal systems. Although not very well known, Scleroderma is the deadliest of all rheumatic diseases.

The tricky part about Scleroderma is that no two patients are alike and therefore, it’s impossible to draw homogenous patterns and create treatment plans across the patient population. This makes it very difficult to identify, diagnose and find effective treatments for patients.

If you didn’t know me before I got sick, you’d probably not be able to tell that anything was wrong. That’s because Scleroderma is known as an “invisible illness”, because often the symptoms are not visible from the outside. So, the internal havoc it’s wreaking isn’t readily apparent. 

During the height of progressive activity, my heart, pulmonary pressures, musculoskeletal system, and kidneys were severely impacted.

Today, my doctor likes to say that I’m “stable” given my history. However, we are still challenged to find sustainable treatment options to control my symptoms.

Prior to my diagnosis, I had never heard of Scleroderma, but now three short years later, it has turned my life completely upside down. I became disabled and had to leave my successful 25+ year career in Human Resources.

Once an avid exerciser who loved to walk and adventure; my mobility has deteriorated so that I now require the use of a cane, walker or motorized wheelchair depending on the distance.

I have persistent GI issues that prevent me from getting the valuable nutrients I need to maintain a healthy weight. I have severe fatigue and daily pain which limits my activities of daily living.

I was diagnosed just 6 ½ years into my marriage to my amazing husband Denny, and it has significantly impacted our plans and dreams for what we imagined our life would be.

My life as a Scleroderma Warrior is a challenge, but I’ve found it helpful to focus on the things I CAN do and less on what I can’t. The things that Scleroderma hasn’t taken away are my trust in God, my resolve to never give up on myself, or my desire to give back by helping others navigate their Scleroderma journey.

In 2023 I decided that although I have Scleroderma, it wasn’t going to have me.

I began volunteering for the National Scleroderma Foundations Upper Great Lakes Chapter, which covers Wisconsin, Michigan, and Minnesota. I now serve as the Volunteer State Lead for Wisconsin.

I recently started a virtual support group for Wisconsin which I’m very excited about and my goal is to help grow community participation throughout the chapter.

In addition to the support group;

I’m proud to be able to contribute to the creation of our Peer Mentor Plus program and support tools like our Health Management Binder and Choosing Resilience and Hope booklet. I also coordinate virtual community events like our annual holiday cookbook, Bingo night and painting parties, amongst other things.

Camille is certainly an inspiration to many all over America, and the world 🙂 Despite the many up’s and down’s she’s experienced with this disease, she continues to make a difference with her strong attitude of gratitude and her self-awareness of the lessons this disease is teaching her.

She has been willingly sharing these as ‘Wednesday Wisdom’ posts on her personal facebook page each week for over 5 years, and this year I asked her to start posting these on the Help End Scleroderma† page which I co-administer with her and Susan Osten.

This is a Christian page designed to serve Scleroderma patients, in various ways. Most importantly, “Raising Awareness” of Scleroderma, which can be one of the “Greatest Gifts” you can give to those who have Scleroderma.

Supporting and encouraging others is indicative of what the Gospel message is all about. We would also value your prayers for a cure to be found and treatments to be made more readily available.

Even though Scleroderma Awareness Month is coming to a close for this year, World Scleroderma Day is happening tomorrow (check back to see what this is all about).

So, how can you help raise awareness?

Maybe you could promote this post, Scleroderma New Zealand, or the Help End Scleroderma† page on your social media platform / feed to help get the word out and raise the profile of this rare disease.

Maybe you could contact someone with Scleroderma just for a chat, or offer to take them out for a cuppa, as having this disease can be quite isolating 😦

Possibly you’re in a position to volunteer your time, provide other resources / talents to help others in need, or even contribute financially to one of the Scleroderma foundations or charities in your country.

Here in Aotearoa (New Zealand) you can either drop me a line here or leave a comment below to discuss how you can help out, or you could fundraise / donate through the Scleroderma New Zealand Inc. givealittle page.

Every $ raised contributes towards raising awareness about Scleroderma, and supporting and encouraging those with Scleroderma and their families cope with this rare and difficult disease.

Blessings ’til next time 🙂

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Staying Healthy this Winter

The weather has definitely taken a turn for the worse, in most parts of the country here in Aotearoa (New Zealand) and winter can take a toll on our physical and mental health.

Staying healthy in the cold weather can be especially hard when living with the likes of Scleroderma.

So what can you do to stay healthy this winter?

1. Drink plenty of water

Winter may be a good time for a hot cup of coffee, tea or chocolate, but we need to ensure that we take on board plenty of water. I was recently reminded of this when one of my blood markers came back slightly elevated. The liver and kidneys require plenty of water to help with flushing out toxins that may build up and while hot beverages can be great for warmth, they can also affect the bodies hydration levels.

So we need to remember to keep our fluid intake balanced with at least 8 cups of water per day. A glass of water with and between each meal can keep us hydrated, healthy and ready to fight off any germs that winter may bring.

2. Ensure you get enough sleep

We can’t afford to neglect the value of sleep (I have previously written about how sleep disturbance (insomnia) has affected me with my health and I’ve also found some benefits to a good night’s sleep here).

The things is, we all need to do what we can to stick to our normal sleep schedule, even around all the distractions that come our way. We need to avoid or limit caffeine, alcohol (if that’s your thing), daytime napping (although at times we may well need this) and large meals before bed, as these factors can all interfere with a good night’s rest.

3. Limit time out in the cold weather

We’ll need to pay attention to the weather forecasts and wind-chill readings more than most. Dressing accordingly, wrapping up in plenty of layers to stay warm and also watching out for any signs of discolouration on our hands and especially our fingertips, also any prickly feeling or numbness as nearly 90% of people with scleroderma have raynaud’s.

We can often avoid these if we take measures to protect ourselves against the cold, such as having jackets, gloves, scarves, hand warmers and extra  warm clothing available while traveling outdoors.

4. Dress warmly

That’s why it is essential to dress warmly as we can always remove layers as appropriate when we get warm. Remember headwear that fully covers your ears, wear mittens rather than gloves and pull on well-insulated socks when dressing for the weather.

Instead of wearing one big coat, dress in several layers of loose, warm clothing. This will better protect you against wind, snow and rain. If your clothes become wet, change them as soon as possible.

5. Exercise

The cold air can sometimes discourage people from keeping up with their fitness routines and it’s easy to let habits slide for the season. But we need to remember that regular activity can help keep you healthy, both mentally and physically.

Rather than going outside you may want to make some space indoors to exercise, even if it’s just a case of moving the coffee table aside to give you more room in the lounge room.

Workout apps or online exercise programs, along with gaming consoles can be great tools to help keep you moving in the comfort of your home. Many people are recognising the health benefits of doing simple stretching exercises and yoga to help keep the body active especially during the colder months.

If you prefer to exercise outside though dress appropriately. Too many layers can make your overheat, so choose layers you can easily remove.

6. Stress less

Make time for friends and family throughout this season as many people end up staying inside to keep warm. This can also create feelings of isolation as people don’t venture out as much as they did during the warmer weather and interact with others. Being able to interact with others over a warm cuppa and a muffin, or slice can help alleviate anxiety and stress.

Other ways that you can alleviate stress include doing things that you enjoy i.e. craft, reading, doing puzzles and jigsaws, watching movies or your favourite TV shows, or listening to music.

You can also manage stress by exploring the likes of breathing exercises, mindfulness and ensuring that you get sufficient rest and relaxation, along with balancing work and leisure activities.

7. Keep the germs at bay

Washing your hands is one of the best ways to avoid getting sick and spreading common winter illnesses, such as the common cold and flu. Germs accumulate through nearly everything you do or touch, so wash your hands frequently. Wash your hands for at least 20 seconds, scrubbing all surfaces and rinsing well.

Also, get the latest flu and COVID-19 vaccines to avoid being sick during the coldest time of year.

Hopefully, you’ll find the above ‘staying healthy this winter’ tips beneficial and I’m pretty sure that you may even have others that can help.

Why not share them in the comments 🙂

Blessings ’til next time

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Every Journey Matters – Helen

To coincide with Scleroderma Awareness Month and this year’s theme:
“Every Journey Matters”

I’ve asked a number of people that I have come to know over the course of the past few years or so, to share aspects of their scleroderma journey to help raise awareness throughout June.

Recognising that every person’s experience with scleroderma is quite unique, as no two cases are the same.

It has been quite interesting to find out how people got diagnosed. As well as the different symptoms and treatments that they have gone / are going through, and the ongoing challenges that they face dealing with this rare, incurable disease that occurs much more often in women than in men.

This week, we’ll be meeting Helen from Tāmaki Makaurau, Aotearoa (Auckland, New Zealand) who was formally diagnosed at the beginning of 2021.

She writes; My first symptoms appeared in 2019 when deep, constant, sinking fatigue which I thought was a virus afflicted me.

I was at lunch with friends and thought I was like the dormouse in ‘Alice in Wonderland’ – falling asleep over the teapot.

Along with this I developed a concrete-like neck and ankles. Swollen fingers and toes. Also my legs thinned, I told my family I had developed ‘chicken’ legs. My skin became excessively itchy and prickly. I lost the hair on my legs. I had joint pain. The skin on my hands and chest took on a pink/white look. Then turned brown.

Covid then occurred. But very luckily, I was able to access specialists and medical testing throughout the lockdowns.

In September 2020 I visited my GP when I found I couldn’t bear to be touched, and my fingers became overly sensitive to heat. He immediately organized lung and heart tests and sent me to my Dermatologist, who thought I had scleroderma, an atypical version. A variant.

The dermatologist sent me to a Rheumatologist who triaged my symptoms and popped me in for an appointment just before Christmas.

Many investigations followed, my ANA came in very positive, and indicative of severe autoimmune disease. Unusually I have no raynaud’s.

My Rheumatologist formally diagnosed me with diffuse scleroderma and morphea in January 2021, because of my physical symptoms, and also from a skin biopsy. I immediately began methotrexate (along with folic acid) as well as, omeprazole for my poor esophageal motility. I have bowel dysmotility, silent reflux because of scleroderma malformations and a hernia to boot.

In 2022 I took part in some zoom meetups with scleroderma groups. The ‘Scleroderma Support & Education NZ Trust Group’, and ‘Scleroderma New Zealand’. I got to know people from the Southland area and asked if I could join their three-monthly lunches because I stay in Dunedin frequently and was very happy to drive around Southland getting to know all the small towns like Dipton, Milton, Gore, Invercargill.

The people at these groups are so very welcoming to me and I learn a huge amount from them all. Those regular lunches, the zooms, and the Facebook site ‘Scleroderma (The Original)’ in USA are my main, excellent sources of scleroderma information. Which I DO need.

My husband is a tremendous support for me. He has come to all my medical appointments and tests. He and my daughter come to those Southland lunches.

I strongly believe that children must feel part of their wider family, so we fly to our young grandchildren in England. I am very well vaccinated. Covid, flu, shingrix, and the two pneumococcal  vaccines. We are avid mask wearers.

I wear the Hidden Disabilities Sunflower lanyard and I find that there is a gentle, helpful watchfulness from others when they notice the bright green and yellow lanyard.

‘Management’ tasks for my scleroderma condition are monthly blood tests, urine tests, home blood pressure readings and yearly retesting of all those other tests where we get to know our body so very well.

Since late last year I have the support of a physiotherapist, and I take part in the online yoga sessions that are run by Dr Nikki Tugnet, an Auckland consultant rheumatologist who has a special interest in yoga for autoimmune conditions.

I value my three-monthly visits to my sympathetic, knowledgeable rheumatologist. Since my diagnosis I have learnt to keep notes of my symptoms, however tiny. I print out this list to hand to my doctors. I’m a good self-advocate.

I have had two episodes of illness which I blame on either scleroderma or my immunosuppressants. Both can increase the risk of cancers and other illnesses.

Two days before flying to England in 2022, after the covid lockdowns ended I was hospitalized with pancreatitis. After two weeks of severe illness, my gallbladder was removed. My husband printed out my scleroderma notes and handed them to my hospital doctors. He also sent a text to my rheumatologist who encouraged the doctors to ring him.

One day I heard some doctors in the corridor saying “that’s where the scleroderma patient is”!  I learnt to request ultrasound insertion of lures because of the difficulty of my tight skin. Prior to that the collagen formed wonderful bumps around each lure site.

This year I had Mohs surgery for two skin cancers on my nose. The cancers had sped up in the previous six months. I had about 6 incision lines and all the appropriate stitches.

I have healed exceptionally well. For which, I am so very grateful. My main worry is poor healing. Early on in my scleroderma travels I healed very slowly and was prone to infections.

I have now been on mycophenolate as well as methotrexate for over a year. I stopped these for a few weeks because of the surgeries and the antibiotics that are required for surgeries. That was another concern for me – how would my body react to starting those immunosuppressants again? All was well thankfully.

Upon my diagnosis, I sent an email to many friends and family stating my diagnosis, how I was feeling, how my body was, and telling of my future treatments and outlook. I found this a useful way to alert a lot of people about my changed situation. People absorbed this information, occasionally asking me how I’m getting on, and I feel I don’t have to keep on mentioning my condition.

A new sclero friend and I hold a monthly coffee group in Auckland. Monthly emails are sent out and via the Auckland Facebook page, and we communicate with a small number of people in Auckland. However, because of hospitalizations, medical appointments, life etc. the numbers to date have been pretty small. We will continue though because we enjoy chatting to our friends and supporting and encouraging others that are going through life dealing with this disease.

Life for me at present is pretty good. I believe I’m very lucky. I had a fast diagnosis, prompt medical testing and treatments, and have good doctors.

Above all, I have great family support.

If you would like to find out more about the monthly coffee & chat group that Helen co-facilitates you can contact her via email to find out the details of where and when they will next meet.

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Next week, we’ll be introduced to a Scleroderma Warrior from Wisconsin in the United States of America, who I met while training as a Peer Mentor.

Camille is extremely passionate about providing support and encouragement to others that have been diagnosed with this rare, incurable disease. She is the Wisconsin lead volunteer for the National Scleroderma Foundation’s Upper Great Lakes Chapter and has helped develop the Peer Mentor Plus Program and the monthly Lunch & Learn Program.

Blessings ’til next time 🙂

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Every Journey Matters – Michael

To coincide with Scleroderma Awareness Month and this year’s theme:
“Every Journey Matters”

I’ve asked a number of people that I have come to know over the course of the past few years or so, to share aspects of their scleroderma journey to help raise awareness throughout June.

Recognising that every person’s experience with scleroderma is quite unique, as no two cases are the same, it’s been interesting to find out how people got diagnosed.

As well as the different symptoms and treatments that they have gone through, and the ongoing challenges that they face dealing with this rare, incurable disease that occurs much more often in women than in men.

This week, I’m introducing Michael (AKA the Sclero Guy) who over the years since his initial diagnosis back in 2013 has experienced some ups and downs.

He writes; I received my Scleroderma diagnosis on August 1st of 2013, and I was symptomatic for at least 2 years prior.

I’d never heard the word Scleroderma before, so I wasn’t privy on what this disease was. Prior to that I had very few medical issues at the then age of 55. But leading up to that diagnosis, I’d been experiencing horrid Gastroesophageal reflux disease (GERD) and horrendous fatigue. 

The Fall of ’12, before a routine colonoscopy, my Dr. noticed I’d updated my prescriptions (RX) allergies to include Prilosec, which my primary had prescribed for the GERD. What I/we weren’t aware of was what we all thought was a reaction to the Prilosec, turned out to be the onset of Raynaud’s.

The colonoscopy results were good, but an Endoscopy showed that I had Barrett’s Esophagus. Also in the Dr’s words: “There’s something else at play here and you’ll need to either go to the University of Michigan or the Mayo Clinic. And if you can’t get there, I’ll take you there myself.”

That started my “Ologist Journey”; as in hematologist, endocrinologist, gastroenterologist, oncologist, and finally on August 1, 2013 a rheumatologist. 

This “Ologist journey” was many months in the making, since setting up specialists appointments in rural Michigan, is a challenge at best. There was a rheumatologist in a larger town, 20 miles away.

Considering all the other Ologists appointments that ended in: “There’s something going on, but we can’t put our finger on it, so we recommend you see a …”, or words to that extent I went to this one with the same expectations. 

Not only was I wrong, but way off the mark – The Dr (that I’ve since referred to as Dr. Dickhead!) had the personality of a Doorknob, and a shocking bedside manner to boot!

I found out about Scleroderma by Dr. Dickhead handing me a brochure and saying: “You have Limited Scleroderma, you will not live a long and full life, at best 5 years. I’m going to refer you to the University of Michigan Scleroderma Clinic, and if you have any further questions, read the brochure, Google it, or ask the receptionist on the way out, as I’m late for lunch”. Then he left the room, leaving me there numb and yet very angry that he just walked out, after dropping such a bombshell!

I walked out of there with the “Deer in the Headlights” look, while Googling it – And it said I had less than a 20% chance of survival. 

At the time I was working as a salesperson at a auto dealership, specializing in financing for those with bad credit issues. I was putting in approximately 55+ hours a week, and I was good at what I did!

I’d waited a couple of days to inform the owners of the business of my diagnosis, since I was just coming to terms with it myself. The wife was at her desk, and her husband was bent over with his back to me and his head in a file cabinet drawer.

I started to explain my situation and I was interrupted by him saying: “We all gotta Die of something!” The wife sat silent, but later on confronted me that I was using my new found Disease as an excuse, and proceeded to berate me until I suggested strongly she back off and be quiet.

I went from hero to zero, and an immediate liability to the company.

I officially retired in May of ’14, filed for social security disability, all on my own, and in September I was declared: Unable to Work and Disabled, in the eyes of the federal government.

Something I never imagined in my wildest dreams I’d be going through, ever!

Just over 2 months later, I was seen (and still am) by Dr. Dinesh Khanna, a world renowned scleroderma specialist at the University of Michigan (U of M), Ann Arbor, Michigan. He re-diagnosed me with Diffuse and not Limited Scleroderma.

My health resume, aside from Diffuse Scleroderma, GERD, and Barrett’s Esophagus includes: Interstitial Lung Disease, Chronic Irritable bowel syndrome (IBS), Dysphagia, Intestinal Dysmotility, Esophageal Dysmotility, and Post-traumatic stress disorder (PTSD) too.

But that 1st visit with Dr. Khanna, restored my Hope, that Dr. Dickhead had taken away in his unprofessional manner. And Hope is a tremendous thing to have, but unbelievably gut wrenching to have it taken away.

I was being treated at the U of M monthly until I was finally fully diagnosed, started all my treatments, Physical Therapy (PT) / Occupational Therapy (OT) started, and a routine had settled in.

My trips eventually reduced to every 3 months, then after a time to every 6 months, until 2020 when it became once a year.

I was well into my scleroderma journey and symptoms too, and it was progressing. The skin tightness, unbearable itching, gastrointestinal (GI) issues, and I was still losing weight.

I didn’t start to see any remission from scleroderma, until nearly 18 months on Cellcept. I felt my skin slightly loosen, I could open my mouth a bit wider and the OT on my hands was improving my dexterity too.

In the midst of all of these medical appointments, my friends of over 40 years, followed the path of other chronically ill folks. They became disillusioned with “My” disease and how “I” was handling it, and our friendships went from throwing life preservers, to throwing cement blocks. Soon those relationships ended 😦

My involvement with the then Scleroderma Foundation and the Michigan Chapter began in February of 2015, when I agreed to participate in a patient panel at a nearby university with a medical school. Central Michigan University School of Medicine started in ’14 and the 2nd year students studied the musculoskeletal courses and autoimmune disease. With a focus on Scleroderma.

Since it was only an 18 mile drive, I couldn’t pass up the opportunity and made the drive again this past February for my 10th consecutive time speaking to the upcoming doctors!

Ironically just a couple of years ago, a downstate scleroderma patient advocate was at her routine rheumatologist appointment and her Dr. introduced her to a new intern. Nancy asked the intern what sparked her interest in rheumatology.

She stated that she attended Central Michigan University and there was a gentleman and young girl and her mother, presenting to our required class.

The gentleman impressed upon me the shortage of rheumatologists nationwide.

I was that gentleman that sparked her career, a true Validation that Advocating Awareness works!  And I continue to Advocate on a daily basis!

Another irony was when I presenting to the CMU Medical Students in early ’19, telling my story as I’d done dozens of times before. But this time it was different!

As I was speaking my heart raced, and I began sweating so bad that it was pouring out of me, soaking myself, my clothing, and I actually soaked into my shoes. But I somehow managed through the presentation, all while wiping my brow, removing my glasses, and fumbling on.

It was then I’d achieved: “The Big Three” or “The Trifecta”, as I’ve come to call it.

Apparently what unfolded that day was symptomatic for yet another diagnosis of Illness Induced PTSD. I fought this diagnosis until one day the realization of what occurs made perfect sense. Subconsciously I’d pushed away the: 5 years to live diagnosis, the former boss saying “we all gotta die of something”, and the betrayal of life long friends & relatives too.

Telling my story that day had unhinged the memories & unleashed my body’s natural response to a major panic attack. Things fell into place and dots were connected to the realization that PTSD had its roots going back far beyond this diagnosis.

In March of 2021, I was contacted by Dr. Brett Thombs from the Jewish General Hospital, Montreal, QC, to see if I was interested in co-facilitating the first ever virtual support group, strictly for Men Living With Scleroderma.

My co-facilitator would be Jacob Davila, an extremely well know, and passionate patient advocate for Scleroderma. I replied yes, without blinking an eye, because I knew it was both Jacob’s and my desire to start this type of group.

On the 4th Wednesday of May, 2021, we rolled out a preview of the group and this was followed by the official kick off of the group on June 23rd, 2021.

We proudly honored our 3rd Anniversary during our May meeting.

Fast forward to today, and I’m in Remission, having improvement in lung capacity and diffusion. Also a vast improvement to my throat issues, including reversal of most Barrett’s Esophagus issues too. But Remission doesn’t stop the handfuls of pills, being vigilant, and continued monitoring by health professionals.

As the Beast called: Scleroderma, is always in the shadows, awaiting a trigger to be released or relapsed again!

I pray to God every morning and night, that that doesn’t occur again, but if it does, I’ll be better prepared to avoid ‘The Deer in the Headlights’ of being diagnosed with this extremely rare, incurable, chronic disease!

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Mike continues to be a strong advocate for the Scleroderma community and even though he has retired from his facilitator role for the 20% Men Living with Scleroderma Online Support Group, he remains actively involved in the monthly meetings contributing to the variety of topics that are covered.

He is a huge encouragement to those that are now leading the group and remains in contact with people all around the world, offering support and encouragement to those affected by this terrible disease.

If you are of the 20%, would you be interested in joining the online support group? In association with the National Scleroderma Foundation this is hosted on Zoom.

The group meets on the 4th Wednesday of the month @ 7pm Eastern Time (US and Canada).

You can register for each date you’d like to attend by clicking on this link.
Alternatively, you can see what other virtual/online groups the National Scleroderma Foundation has to offer here.

Next week, we’ll be introduced to a Scleroderma sojourner from Auckland, New Zealand, who is passionate about providing support and encouragement to others that have been diagnosed with this rare, incurable disease.

Blessings ’til next time 🙂

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Every Journey Matters – Dianne

To coincide with Scleroderma Awareness Month and this year’s theme:

“Every Journey Matters”

I’ve asked a few people that I have come to know over the course of the past few years or so, to share aspects of their scleroderma journey to help raise awareness throughout June.

Noting of course that every person’s experience with scleroderma is unique, as no two cases are the same, it has been interesting to find out how people got diagnosed, and the different symptoms and treatments that they have gone through and the ongoing challenges that they face.

This week I’m introducing Dianne who along with her husband Gordon have experienced some ups and downs over the years since her initial diagnosis back in 2005.

She writes; My first Symptoms started back in 2004 ,when I was 43 years old. At the time I was working at Aotea Pathology in Wellington NZ. 

It started with the sudden onset of Severe Raynaud’s. I found walking into the supermarket very painful and swimming in the mountain stream at Mt Ruapehu excruciating, there was no way I could stay in the water. I also noticed that I wasn’t as fit after a weekend’s tramping as usual.

I mentioned my Raynaud’s to my work colleagues, and they all said not to worry as they all have Raynaud’s and it’s to do with old age.

My husband Gordon was instrumental in getting me diagnosed, he attended the Grand Round every week at his work at the Otago Medical School in Wellington and one week in 2005 he attended a talk by Dr Grainger where she was talking about Scleroderma and lung function. From the description, Gordon suspected that I had similar symptoms.

I wasn’t impressed about his suggestion at all, and with his thoughtfulness, Gordon approached Dr Harrison and mentioned my symptoms to him and he suggested that I go and get a series of tests done, from my GP.

I did this and as I worked at that laboratory I was able to look up my results and I noticed that my ANA reading was very high. As immunology was not my area, I took myself off down the corridor to ask one of the Drs, what this meant.

He took a look at the results and quickly sent for Dr Steel who took a quick look at my hands and diagnosed Scleroderma on the spot.

I was a bit taken back, but was very thankful. Dr Steele suggested that I make an appointment with a Rheumatologist and get my baseline tests done within the month; like lung function, CT scan of my lungs and echocardiogram. 

The wheels turn a bit slower than that in the public service, but I got it all done and found out that I had mild lung fibrosis.

Meanwhile Gordon was suspicious of the fact that all of our department had Raynaud’s, being a Senior Research Fellow he looked into the possible causes of Scleroderma and organic solvents was one of them which he found in studies overseas. I had, had my hands in organic solvents for 25 years.

From this we approached my Rheumatologist and we decided to do a Raynaud’s prevalence study on the general population in NZ which was published in the New Zealand Medical Journal. Then to compare, we did a survey of Raynaud’s and Laboratory workers around all the medical labs in NZ.

From this study we found that there was a higher incidence of severe Raynaud’s among lab workers who worked with organic solvents. This paper was published in the Journal of Rheumatology.

To this day we have researchers quoting these papers that we have published on Raynaud’s and the association with organic solvents.  

Not long after finding out I had lung fibrosis and the association with organic solvents and Scleroderma, I left my place of work and started training in Medical Vascular Ultrasound.

I enjoyed completing my Part One section of the course, but was unable to find a full-time job to complete my Part Two section.

Meanwhile after leaving my previous employment my lung function improved right back up to within normal limits but the fibrosis remained, also my Raynaud’s improved slightly to a mild form today. 

Not long after leaving my employment we approached ACC for a workplace injury, this was denied – even though the evidence was very clear that Solvents can cause Scleroderma. We had Professors from Harvard University and the Otago Medical School backing us also. It was a difficult and stressful process and most disappointing as other successful claims were made overseas.

While not able to find employment, I started up a support group here in Wellington in 2009. Then after a couple of meetings we decided to set up Scleroderma New Zealand.

Barbara and John Spavin started a terrific newsletter and from there we had little groups starting in Hamilton, Palmerston North, Invercargill and Christchurch.

Cushlas Marsters set up the Scleroderma NZ facebook page and it has been a big boost and still runs today along with the Auckland facebook page.

Between Wellington, Hamilton, Christchurch and more recently Invercargill, we ran numerous seminars which were appreciated by many people with Scleroderma and their families.

In February 2015 Scleroderma NZ became an Incorporated Society and Registered Charity.

Gordon was the Secretary and Treasurer and I was the President until 2021. We have been lucky to now have Jenny Andrews as President, she is doing a great job along with Vice President Tina Mclean. We are also lucky to have Jane Sainsbury as Secretary while Gordon remains as Treasurer and I’m still on the committee.

Until this year I remained as the Wellington group Coordinator along with Tina Mclean and Cushla Marsters, then with good fortune Perry Bray came along and has taken my place.

I am very much looking forward to seeing our group develop under Perry’s great guidance and experience with people. It was a welcome relief as I have not been able to attend face to face meetings as I am now compromised due to the treatment I have been on for the newly acquired diagnosis of ANCA Vasculitis.

This condition came as a complete shock, but is occasionally also seen in people with Scleroderma although rare.

I have now set up ANCA Vasculitis NZ and have virtual monthly meetings and lobby for improved medications.

My Scleroderma has been relatively good over the last 20 years and I am very grateful for the much-appreciated support of Gordon and all the people that support Scleroderma NZ.

The ‘Understanding and Managing Scleroderma‘ PDF booklet [pictured above] is intended to help people with scleroderma, their families and others interested in learning more about the disease to better understand what scleroderma is, what effects it may have, and what those with scleroderma can do to help themselves and their doctors manage the disease. It answers some of the most frequently asked questions about scleroderma.

Next week, we’ll be introduced to another Scleroderma Warrior from the United States of America. He has also utilised his administrative and leadership skills, abilities, and new found passion to help others by giving back and sharing his experiences since being diagnosed with this rare, incurable disease over many years.

Blessings ’til next time 🙂

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The Importance of Assembling a Support Network

I’m sure that we all know people who seem to be able to manage difficult situations with great skill and success.

These people are often referred to as “effective copers” and you too can become an effective coper.

A few days ago* I introduced some aspects required in developing an effective coping strategy by using the BRIGHT IDEAS approach.

These bright ideas are great! But if we do them alone at times it can be pretty hard going. We need people around us who can help support, encourage and at times motivate us regardless if we are facing health challenges or not.

Over the past few years, due to the complications that scleroderma brings, I have truly realised the importance of assembling a support network / system that can assist me in times of need.

So, hopefully some of the below aspects you’ll also find helpful as a support network / system should have several parts, and should address your physical, emotional, and informational needs and concerns:

Family

This is where most people turn for support, and it’s your most important source of help. But it’s important to remember that your family won’t automatically know how to help you with your disease.

Just as you are learning how to manage the challenges associated with scleroderma, they will be learning, too.

There are many sources of information for families of people with chronic illnesses. These sources include health professionals, support groups, books, and the Internet.

Encourage your family members to get the assistance and information they need so they can help you in an effective way without becoming overwhelmed themselves. A good family therapist with experience working with families dealing with chronic illness can also be incredibly helpful if your family is becoming overwhelmed.

Friends

Friends will often offer to help, but in many cases, they have no idea what to do to be helpful to you.

They may even feel as if they are bothering you when they ask. Don’t expect your friends to read your mind.

If you need to be driven to a doctor’s appointment next week, ask. If it would really help you if your neighbor could pick up some groceries for you next time he or she is at the store, ask. If you need help lifting something, ask.

And don’t forget that friends can be a wonderful resource for addressing emotional needs. If you just want to spend some time having fun and focusing on something other than scleroderma, call a friend and meet for lunch, go to a movie, take a drive, or sit outside on the patio and catch up. It will make you feel better and make your friend feel better, too. It’s frustrating for friends when they want to help but don’t know how.

Work / school

In addition to good-hearted people at work or school whom you may count among your friends, there are often other co-workers, supervisors, teachers, and human resources personnel who may be able to help you with the specific challenges presented by your scleroderma.

Share with work associates the specific issues you are managing, and enlist their support in solving those in the workplace so you can continue to be effective at your job.

Human resources can be a fantastic source of professional assistance for making modifications to the workplace and/or your schedule and responsibilities.

It can also help connect you with resources to address issues of physical and mental health, insurance, and finances.

Remember asking for help is not a sign of weakness.

If you are a student, don’t hesitate to speak with your teachers about your condition as they may be able to work with you to modify your schedule, get assistance for you with learning materials and classroom accommodations, and so on.

Sometimes, people don’t want to tell persons of authority (e.g. bosses, teachers) about their scleroderma, thinking that it may be used against them in some way. This is definitely a possibility, and everyone has heard stories of insensitive supervisors. You’ll need to carefully evaluate the person and situation to be sure you are not putting yourself at risk.

However, remember that if you don’t tell them what you are coping with and don’t enlist their support, they will not be able to help you. You can also mention that for the most part, you do not want or need to be treated differently from others and that you can handle your health problems.

Also, there are a number of laws that protect people with illness from discrimination in the workplace and in education. These laws can protect you in difficult situations. Human resources and student services personnel at schools and universities can be excellent advocates for employees who find themselves experiencing discrimination due to their illness.

Community

Community is defined in different ways for everyone. It may be the people in your neighborhood, the people in your town, members of an organization in which you are active, or other professionals in your field. Many people find their spiritual / religious community to be of help.

These days, it can even be an electronic community of people who have never actually met but communicate via email and the Internet.

The thing is, many of us are members of many, sometimes overlapping, communities. So, think about each community you are a part of and decide how your participation in that community can help you manage your scleroderma.

A special community that you might want to add, if you aren’t already a member, is a scleroderma or chronic illness support group. Although some people shy away from support groups, primarily due to discomfort with sharing personal information, studies have shown that support groups are helpful to people in many ways. If you don’t feel comfortable going in person or there is no support group near you, consider online support groups.

Healthcare professionals

When you have scleroderma, healthcare professionals should occupy a very special position in your social support network. Yet many people barely know the doctors, nurses, and other professionals who treat them, and may feel uncomfortable talking with them or contacting them with questions or concerns.

In many clinics and hospitals there are people assigned to serve as patient advocates, or whose specific skills are communicating with patients and making sure that their needs are being met. Try to identify who these people are in your healthcare system and express your specific needs to them.

The thing is, it’s often not realistic to expect busy healthcare professionals (such as your rheumatologist) to respond quickly and completely to all of your needs, even for information. They often simply don’t have time.

So, try to get support and information from other sources, and save your requests and questions for healthcare professionals who are specially suited to address them.

For example, you don’t need to call your rheumatologist to find out whether there is a support group in the area. There are other ways to find out. I may even be able to potentially help direct you to someone in your country / area that may be able to help (if so drop me a line or leave a comment and I’ll endeavour to get back to you) 🙂

Recognising though that it is essential that any questions about your specific medical condition and its management should be discussed thoroughly with your healthcare team, to your satisfaction and understanding. You should be an active member of your healthcare team!

I hope that the above information is beneficial as you work towards assembling your own support network / system, if you haven’t already. I have certainly appreciated connecting with online scleroderma communities and support groups all around the world as I navigate the challenges that come my way.

Note: the above information was gathered from one of the modules on the Taking Charge of Systemic Sclerosis (TOSS), an internet self-management program on the Self-Manage Scleroderma site.

Blessings ’til next time 🙂

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