|Jen Wells, USA|
Name: Jen Wells
Limited Scleroderma / CREST Syndrome
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.
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.
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.
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.
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.
Not knowing what else to do, I reached out to the Scleroderma Foundation support group in Phoenix.
Thank goodness for the Scleroderma Foundation support group who helped me find my current Rheumatologist, Dr. Joy Schechtman, for which I am blessed.
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.
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.
Perhaps I lacked a certain understanding or awareness.
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.
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.
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 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.
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.
My issues tend to migrate and love to mix it up.
A current frustration in its own right, being unable to afford the medication I need.
I also use therapeutic grade essential oils orally and topically and use a ph alkaline water machine for my water.
I have recently developed a sensitivity to steroids (oral & injectable) so pain management is incredibly difficult.
So, I am now in search of something outside the box other than biting my cheeks and clenching my fingers and toes constantly.
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.
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.
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.
It breaks my heart but I can honestly say that without them, I would not have a roof over my head.
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.
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.
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.
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.
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
Expert Specialist Centres, Click here
World Scleroderma Day 29th June 2016, Click here
World Scleroderma Day 29th June 2017, Click here
Why Global Collaboration is important to the Rare Disease Patient, Click here
2016 Rare Disease Day Patient Voice