Saturday, 16 June 2018

Jen Wells, USA. Scleroderma Awareness Month 2018. Raynaud's, Autoimmune Rare Disease.

Jen Wells, USA. 
Scleroderma Awareness Month 2018.
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, dizziness.

Neuropathy.

Ssevere nausea & vomiting (gastroparesis).

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.


2017 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.  


2017 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.

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. 
June 2017.  



2018 UPDATE:

A few months after my Scleroderma Awareness Month article last year, I was able to go back on Humira, which was a blessing.

However, I recently qualified for AHCCCS/ state medical assistance and much to my dismay and a lot of misinformation, not only have I lost all my doctors, but I have had to stop Humira again.

I am now starting all over.

On my most recent visit with my new GP it was ‘highly suggested’, that I would be better served with an Internal Medical Doctor due to my complicated health history or as he put it, “as a patient, you’re a full time job for me... there is just too much.”

As for finding a new Rheumatologist, I am still waiting for my records to be transferred and have been told that, there are no new patient appointments available for several months out.

I did implore my old rheumatologist to allow me to be seen as a private patient, as her
office doesn’t take my new insurance, in order to continue Humira.

However, her office told me that it is against the law to collect money from a patient on medicade, and that, they would no longer be able to help me.

I am not quite sure how this is considered continuity of care, something I was assured I would receive.

In my experience, it seems to be nothing more than a buzzword insurance companies throw around.

Current SYMPTOMS:

Raynaud’s, dizziness/vertigo, reflux, nausea/vomiting, diarrhoea, migraines, bad bone friction rubs (ankles/wrists), neuropathy(legs), loss of feeling in feet, muscle fatigue and weakness body. Wide, feet and hand contractures.

Extreme, extreme fatigue, coupled with insomnia. Sciatica (right side), hands, feet, arms and legs and left side of face tingling, burning and numbness, loss of feeling in fingers and toes, mild calcinosis (it’s been worse in the past) blurred vision, worsened hearing loss(frustrating), figure nodule, unknown growth on my left side above chest below clavicle, difficulty swallowing, depression, mood swings, anxiety, extreme weight fluctuations, pain from compression and osteoarthritis in lumbar region, cervical neck and back pain (prior anterior cervical spinal fusion), worsening tachycardia, heart related seizures, heat and cold intolerance, hives, increasing food intolerances and allergies (too many to list), bone pain, brain fog, all over, body - wide pain......

My symptom list reminds me of the poem called ‘Sick’, by Shel Silverstein:

“I cannot go to school today,” said little Peggy Anne McKay. “I have the measles and the mumps, a gash, a rash and purple bumps.” - except for the ending, that is ... No going out to play for this girl.


Current Medications:

For at least the next 30 days I will continue to take leflunomide, hydroxychloroquine, spironolactone, armour thyroid, protonics, montelukast, and immodium, Benadryl and sumatriptan as needed.

I currently have a medical marijuana card as it is legal in Arizona. I use a topical pain cream made locally that offers some relief and the occasional gummy, in the hope of being able to laugh through the pain.

In addition to this, I have started going to a holistic doctor and her students at a naturopathic school in Tempe in the hope of finding relief through functional medicine, diet and lifestyle changes.

I have also begun Japanese acupuncture in a community acupuncture setting which helps make tri-weekly treatment more affordable.


RESEARCH 2018:

Have you taken part in a research trial?

Yes

Several years ago I participated in a drug trial for secondary Raynaud’s.

I took two pills 2x a day for 3 months.

Every 2 weeks they checked my nail bed capillaries for vascular changes and improvement.

At the end of the trial I was told I had not been given the placebo and was given a prescription to continue the medication.

At that time, I chose not to continue the medication, as no improvement or changes had been noted, and the medication was not covered under my insurance, and was very costly.


Did you have to travel far?

I travelled an hour each way 2 x a month for 3 months.


Would you advise others to take part in research trials?

YES!

I would absolutely advise others to take part in research studies if at all possible.

If there is a chance it could help others, change the course of this disease for the better or find a cure for Scleroderma, then sign me up.

Unfortunately, I have a lot of overlap that has kept me from qualifying for a large majority of research studies available but I am always hopeful and willing should the opportunity arise.


In Between Medical Appointments:

I find my energy levels so low that the majority of the time in between doctor
appointments I am either sleeping, resting or driving my kids to school and activities.

On my good days I try to get out and do water aerobics.

 
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. 


We will never view you as being 'too much to handle', Jen. 

Wishing you every success with your new treatment plan and regime.  

 
 
 
 
To read my articles: 
 
Current Unmet Clinical Needs 2018, Click here 
CALCINOSIS, Click here  
GUM RECESSION, TOOTH EXTRACTS, Click here 
SOFT TISSUE, ULCERS, Click here  
TELANGIECTASIA, Click here 
SCLERODACTYL HANDS, Click here   
INVISIBLE DISABILITY, Click here 
RAYNAUD'S, Click here 
GASTROINTESTINAL, Click here

Prof Chris Denton presenting a plaque to Kevin's daughter, Michelle, and wife, Debby, for funds raised in Kevin's memory for medical research at the Unit. Thanks to Michelle for the photo.
  
'Scleroderma Awareness Month 2018: Medical Research Fundraising, RIP Kevin East', Click here   
 
Global Patient Profiles Campaign Index, Click here  

Importance of Medical Research and Awareness Raising, Click here
NIHR Video: 'My Experience of Clinical Trials', Click here   
 
Week 3, 2017 Patient Profiles: Medical areas of current interest, Click here
Week 2, 2017 Patient Profiles: Progress in Medical Research, Click here 
Week 1, 2017 Patient Profiles: Introduction to multi complex disease, Click here
Why I chose global Patient Profiles for my 2017 / 2018 Campaign, Click here 
 
2017 Global Patient Profiles Campaign Introduction, Click here 
 
'Being your own awareness advocate', Click here
 
Scleroderma Awareness Month Flashback 2017, Click here 
Scleroderma Awareness Month Flashback 2016, Click here 
My 2016 Campaign, A to Z: Scleroderma and Raynaud's diagnosis, Click here 
 
2016 Campaign Video, Click here  
 
March 2018 Autoimmune Disease Awareness Month, Click here  
 
 
World Scleroderma Day 2017, 29th June, Click here 
World Scleroderma Day 2016, 29th June. Origins of the date, Click here 
World Scleroderma Day 2015, 29th June. 

James Carver, myself, Prof Chris Denton

I had the pleasure of being a presenter and part of the European co-hort who gave a presentation at the European Parliament, Brussels, in honour of World Scleroderma Day 2015.  

I am immensely grateful to James Carver MEP for organizing this event in memory of his late wife Carmen, who sadly passed from Scleroderma.  

To view the presentation, Click here 


To view my article 'Why Global Collaboration is Important', Click here

All patients included within the global patient profiles campaign, highlight the URGENT need for an investment in medical research, as well as: 


Early Diagnosis 
Expert Specialist Centres 

Access to innovative medicines 

ALL being, crucial factors for best practice management and care.  

 
To read my articles:
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   
This year, I am celebrating 20 years of being a patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre. 
Sept 2017

Prof Chris Denton and I, 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. 
1st 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. Read more, here
For latest updates follow: 
Facebook Page:
Twitter: @SclerodermaRF  @RaynaudsRf  
#SclerodermaFreeWorld           #RaynaudsFreeWorld
Living the dream, scleroderma style.  
Please DONATE to help fund medical research at The Scleroderma Unit, The Royal Free Hospital, London.  

100% of your monies will be used for medical research purposes only. No wages or admin costs. Thank You.
#HOPE 

Last Update: June 2018
 
  

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