Raynauds Scleroderma Global Patients: Jen Wells, USA. June Scleroderma Awareness Month 2017. Raynaud's, Autoimmune Rare Disease. Patient Profiles DAY 16

Jen Wells, USA

Patient Profiles DAY 16

June Scleroderma Awareness Month 2017

Raynaud's, Autoimmune Rare Disease

Jen Wells, USA

Name: Jen Wells

Location: Chandler, AZ, U.S.A.

Diagnosis:

Limited Scleroderma / CREST Syndrome

Year of diagnosis: late 2011/2012

Age at diagnosis: 40

Where / who diagnosed you?

Rheumatologist Dr. Paul Cauldron confirmed the diagnosis

What were your presenting symptoms?

I had most symptoms for two years or more at time of diagnosis.

These were my symptoms:

Secondary Raynaud’s

Calcinosis (hardening lumps in fingertips)

Pain, numbness, tingling and loss of feeling in finger-tips, hands, arms, legs, feet and toes.

Fibromyalgia

Costochondritis, balance issues, neuropathy, severe nausea & vomiting (gastroparesis), dizziness, extreme fatigue, lack of energy, brain fog, sleep issues (too little), muscle, body and joint pain, constant colds (always sick), stiffness and swollen fingers and toes, Vitamin D deficiency, hypothyroidism, rashes, hives, constant itching, Sjogren’s.

Extreme sun sensitivity/photosensitivity.

How long did it take for you to be diagnosed after first symptoms?

I had been experiencing symptoms for several years before my ANA test was done.

My Primary Care Doctor had suspected autoimmune issues for quite some time but was reluctant to test me. She was concerned I might lose my job or future job opportunities as I had recently returned to work and was going through an extremely bad divorce after a 9 year stint as a stay at home mom.

Her other concern; did I really want to know what was wrong and what if there was no cure, then what? After constantly going on and off prednisone for a couple years and being told it was all in my head by other doctors as my symptoms worsened, I just wanted some answers.

So she ran tests and bloodwork...I still remember the call and how she sounded as she told me the results and how she was sorry. Dr. Jennifer McDonald is still my P.C. Physician to this day.

And to her credit she always took my issues seriously and never doubted my word or

questioned my sanity, and for that I will always be grateful.

In early 2012 my diagnosis was confirmed, after a two month wait to see the Rheumatologist, based on a positive ANA, blood work and presenting symptoms.

That said, my experience with Dr. Cauldron was demoralizing to say the least. In less than 15 minutes he managed to squash any hopes I had of understanding or managing my health.

He gave me a quick glance and said yes, I had CREST but to him I looked fine and as far as he was concerned no further tests or treatment was needed.

He bluntly said I was wasting his time and to come back when my fingers turned black (ironically I started having issues with hypoxia shortly thereafter) because he had real patients to treat and children who were dying.

To be told that ‘someone who looked as healthy as I did, had no need for a Rheumatologist, and to just deal with it’ and then just walk out of the room was devastating. He never gave me a chance to speak or ask a single question and I left the room in tears.

As I passed the front desk I asked if I could see another Rheumatologist and was told due to office policy I would only be allowed to see the same doctor. I never went back.

A year later, shortly after a successful Anterior Cervical Spinal Fusion where they drilled and removed calcium from my neck that had caused severe compression & disc damage, I finally sought help.

At the request of my doctor's, I found a new Rheumatologist.

By this time, I had a bad calcium eruption on my finger and severe swelling & oedema primarily on my left side.

At that point I was put on hydroxychloroquine and amlodipine and was told to follow up in 8 months. By the end of 2013 I had yet to have a nailfold capillary test, PFT, 3-d echo, x-rays or any of the standard tests.

In January of 2015 I was seen by Mayo Clinic in Scottsdale. My diagnosis was reconfirmed and all the proper tests were done. At that point I was told to seek a Rheumatologist in my community as they were currently not taking on new patients. I was at a loss as my current Rheum had left to join the largest practice in Arizona, also the place where I was first diagnosed.

Not knowing what else to do, I reached out to the Scleroderma Foundation support group in Phoenix.

How amazing to find others like me, who understood what I was going through. It was Janice, the current leader of the group, who sadly, since has passed, who first helped me navigate the muddy waters that are Scleroderma.

Thank goodness for the Scleroderma Foundation support group who helped me find my current Rheumatologist, Dr. Joy Schechtman, for which I am blessed.

Current reality:

I would say my current reality is learning to accept this new, ever changing, version of myself. I won’t say it is easy and it certainly can be frustrating and challenging at times but at the core, I am still me.

The last six years have been quite a ride and I could not have done it without the support of my parents, my two teenage boys, and a handful of very close friends for whom I am grateful.

It took all of us some time to understand and grasp the intricacies of how life changing this disease truly is but we are adapting the best we can and continue to learn along the way.

I continue to remind myself that Scleroderma is only a part of my life, it is not who I am nor will it define me.

If I have learned anything on this journey that is ‘Scleroderma’, is that, it teaches you empathy. I always thought of myself as a caring and empathetic person before I became sick, but as a patient you start to really understand there is more to it than that.

Perhaps I lacked a certain understanding or awareness.

I’m human and like anyone, at times, I can still be quite selfish. I now understand I have a lot to learn and a long way to go, but for me, the journey has only just begun.

Everyone has things going on in their lives and just because we may not see it, be it physical or emotional, doesn’t make it any less real.

In my opinion, this is something we should all try to be a bit more aware of and perhaps take a moment to imagine what it’s like to walk in another’s shoes.

I can honestly say, without hesitation, that I truly hate Scleroderma.

It is a mean, cruel and excruciatingly painful disease. But there is a silver lining to all of this and that is the people, my sclero brothers and sisters. I get choked up just thinking of the love, kindness and support we have for each other.

As ugly as Scleroderma can be, the one thing about this disease that is truly beautiful are the people themselves, and I am glad to know them.

They inspire me and give me strength to keep going and above all, they understand that some days are just plain hard and it’s ok to admit it.

I would never wish this disease on my worst enemy but I am grateful for the support and strength of those who stand with me because without you, I would truly be lost.

I currently see my Rheumatologist for office visits and blood work every six weeks.

I see my other doctors as needed or twice a year for tests, these doctors include:

G.P., Cardiologist, Pulmonologist, Physical therapist, Endocrinologist, Nephrologist and I am currently looking for a new Gastro, Neurologist, Pain Doctor and Dermatologist and Immunologist/Allergist.

My current issues include:

Occasional calcium eruptions/ulcers, excessive synovial fluid, R.A.,

Secondary Raynaud’s, erosion, bone spurs in my feet and wrists, swollen and painful joints, myopathy, neuropathy, fibro, gastroparesis, delayed stomach emptying, hiatal hernia, Meniere’s, hyper/hypo pigmentation, hypothyroidism, hypokalemia, migraines, stiffness, excessive fatigue.

Atypical trigeminal neuralgia, sleep apnea and sleep issues, osteoarthritis, spondylosis, tingling and numbness in hands feet and arms and legs.

Allodynia, flares & inflammation, occasional bouts of depression, and the list goes on and on (as I’m sure I have left out a few things)... and of course the whole brain fog thing.

Not all of it is Scleroderma related and a lot of it you can’t see, but basically, I hurt daily and never know what to expect from one day to the next.

My issues tend to migrate and love to mix it up.

One thing for sure, Scleroderma and my other health issues are never boring. Repeat mantra daily: I may have sclero but it doesn’t have me.

My current medication regime includes a mountain of pills, though it is slowly dwindling due to the increasing cost of medication now that I am on Medicare.

A current frustration in its own right, being unable to afford the medication I need.

Some days I may take as many as 15 different medications or more, but I do my best to avoid doing so, unless things are really bad.

The medications I take daily include:

pantoprazole, hydroxychloroquine, nifedipine, armor thyroid, bupropion, leflunomide, carvedilol, montelukast, and spironolactone and occasionally baclofen.

I try my best to stay active, for me this means using the elliptical machine 5 days a week or more, and water aerobics several times a week, as well as, walking as often as I can, when I am physically able to do so.

My current goal is to incorporate more stretching in my daily routine and add resistance exercises with bands, in order to have better range of motion and to prevent further loss of muscle and tissue damage.

I also eat a high protein, low fat and low carb diet that includes anti-inflammatory foods. I avoid sugar, corn products, foods in the nightshade family, cruciferous vegetables, soy, dairy and processed foods.

I also use therapeutic grade essential oils orally and topically and use a ph alkaline water machine for my water.

What are your 3 biggest current challenges due to your diagnosis?

Pain management

Energy levels/fatigue

Finances

I am allergic to most narcotic pain medications which include vicodin and percocet. I am also extremely sensitive to medication containing serotonin and the medications used to treat used fibro and neuropathy such as those in the gabapentin and neurontin family.

I have recently developed a sensitivity to steroids (oral & injectable) so pain management is incredibly difficult.

In fact, I have been told by several pain management specialists that they would just be taking my money and there is nothing they can do. One doctor even refunded me my co-pay after looking at my chart.

So, I am now in search of something outside the box other than biting my cheeks and clenching my fingers and toes constantly.

Fatigue is another big issue for me that seems to partner frustratingly well with pain.

Now that I am on a Medicare Advantage PPO, and can no longer afford my major medical medication, my day to day functioning has once again, become a huge issue.

Humira was life changing and now I find myself once again, in bed constantly. A quick trip to the store or a simple outing will often take me a couple days to recover.

You don’t always realize how much a medication helps, until you are forced to stop taking it.

Keeping up with daily chores and doctor appointments has once again become extremely difficult.

Things I once took for granted can often take all day, including a shower.

I mean come on, should you really need a 2 hour nap after a shower? I think not.

And getting dressed should not be an all day event, I’m talking sweats here, not getting glammed up.

I absolutely despise the fact that my kids constantly see me exhausted or in bed. Yet if I push myself too hard I may be in bed for up to a week. I am trying to become better at balancing things but each day brings its own set of challenges.

Often frustrating beyond belief. All I can do is hope that things will change and I will somehow be able to get Humira or another biologic, sooner than later.

Which brings me to my third issue, expenses. As a single mom with two teenage boys on disability, money is tight. I have extremely supportive and generous parents but they are getting up there in age and are exhausting their resources in order to help me with food and rent.

It breaks my heart but I can honestly say that without them, I would not have a roof over my head.

My disability is just enough to cover doctor appointments and the most basic medication expenses, forget food or housing.

I receive just enough to disqualify me from receiving any type of state assistance including Medicade, Access or medication assistance.

When I think about this and the future it truly frightens me but for now I am grateful to have shared custody with my children, while I still can.

What are your 3 top tips for living with your diagnosis?

Living with Scleroderma can certainly be challenging but I have found these things

really help keep me going.

First, remain positive, or as positive as is possible, as we all have an occasional difficult day or week.

For me, a sense of humor really helps keep the positive energy flowing, as does laughter. So do your best to find something daily that brings laughter or a smile to your face.

It sounds silly but it can be anything from a piece of chocolate to a picture of a baby animal. Anything that brings you joy.

Next, pay it forward. I often find when I feel my worst it helps to brighten someone else’s day, it’s a win-win situation for both parties.

A simple smile can go a long way or pay a stranger a compliment. It doesn’t need to be elaborate just be kind and sincere in your actions.

Finally, make sure you have a support system in place.

This can be as simple as a friend who is there for you, family members, several friends or a support group.

This helps you remain present and will help you from closing yourself off or shutting the world out.

I would be lost without my best friend and my sclero sisters.

You know who you are and thank you for dragging me out into the light when things seem difficult or hopeless.

These are the people who will help you put things in perspective and make your day

brighter just by being there.

My wishes for the future (as well as now) are:

Continue to share Scleroderma education and awareness with others

Never stop talking about this horrible disease

My dream is that we will one day live in a sclero free world #SclerodermaFreeWorld

Huge thanks go to Jen for sharing her scleroderma reality and experience for scleroderma awareness month, and for all that she does for her fellow patients, throughout the year.

To read more about why I chose ‘Patient Profiling and Research’ as the focus of my 2017 campaign, Click here

Why Research and Patient Profiles? Scleroderma Awareness Month 2017, Raynaud's, Rare Autoimmune Disease, Click here

2017 INDEX Scleroderma Awareness Campaign Patient Profiles, Click here

INDEX to Scleroderma Awareness 2016 Campaign, Click here

June 2016.

To read my articles:

Rare Disease Day 2018, Research - Taking Part in Clinical Trials, Click here

March Autoimmune Disease Awareness Month 2018, Click here

Global patient video, Click here

Becoming a Patient Research Ambassador for the NIHR, Click here

If we only had more RESEARCH investment for Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here

Scleroderma Awareness Month 2017 Patient Profiles Campaign, Click here

Scleroderma Awareness Month 2017 Patient Profiles Campaign Patient Index, Click here

The Pandora’s Box of the rare autoimmune disease Scleroderma, Raynaud's and Cancer, Click here

Key Event Dates 2018, Click here

Importance of an Early Diagnosis, Click here

Taking Part in Clinical Research Trials, Click here

The Importance of a Multi Disciplinary Medical ‘Dream Team’, Click here

Expert Specialist Centres, Click here

My Skin is Cured from Scleroderma, Click here

UK Guidelines for Managing and Treating Scleroderma, Click here

Fatigue, Click here

Mobility, Click here

Diet and nutrition, Click here

Raynaud's, Click here

World Scleroderma Day 29^th June 2016, Click here

World Scleroderma Day 29^th June 2017, Click here

Why Global Collaboration is important to the Rare Disease Patient, Click here

RARE DISEASE DAY:

The theme to this years Rare Disease Day is Research

Rare Disease Day 2018 – Research, Taking Part in Clinical Trials. Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here

2016 Rare Disease Day Patient Voice

2016 Rare Disease UK Parliamentary Reception

2017 Rare Disease Day Flashback

2017 Rare Disease Day unmet clinical needs to the scleroderma patient

Rare Disease Day is a fantastic opportunity for the entire rare disease community to shine a spotlight on their reality, combining as one unified voice. Where, at least one commonality presides –

Medical Research provides the brightest light

for the illumination of the rare disease patients’ plight.

I highlighted other areas of medical research interest within Week 3 of my Patient Profiles Campaign for Scleroderma Awareness Month 2017.

VIDEO

INDEX

Although rare disease patients are few in number, eg. 2.5 million scleroderma patients worldwide, (the World Scleroderma Foundation), the commonalities and golden hallmark for each rare disease patient are the same:

Early Diagnosis

Expert Specialist Centres

Access to Innovative Medicines

Where MEDICAL RESEARCH investment is VITAL.

Research is the key. Abstracts from 2016 World Congress, Click here

Scleroderma Awareness Month Campaign 2016, Click here

Links

View video, here

Preamble - here

The Family Day at the Scleroderma Unit, The Royal Free Hospital is taking place on the 19^th May 2018. Browse the program, here

This year, I am celebrating 20 years of being a patient at this world leading expert specialist research centre.

Sept 2017

I am eternally grateful to the global scleroderma trail blazers Dame Prof Black and Prof Chris Denton, whose commitment and dedication to unlocking the scleroderma enigma, is nothing other than, superhuman.

I am truly humbled and inspired by their work ethic. I am wholly appreciative for Prof Denton’s continued medical expertise and support, especially during my barrister qualifying years, 1997 - 2004.

1^st March 2004, I qualified as a self employed practising barrister. Further to having been told in 1997, by my diagnosing doctor, that I was looking at a 15month prognosis.

I very much hope to utilise my professional skills and qualifications along with my patient experience, to help achieve the #SclerodermaFreeWorld dream, hoping to improve understanding and best practice, in the meantime.

For latest updates follow: