This week I would like to welcome Cheyanne from Hospitalprincess.com to the Living Well with Chronic Illness series.
Cheyanne has Ehlers Danlos Syndrome Type 3, Mast Cell Disease, Dysautonomia/Postural Orthostatic Tachycardia Syndrome (POTS), Gastroparesis, and Fibromyalgia. The Ehlers Danlos Syndrome is primary, while the others are secondary. The diagnosis that interferes with her life the most is Mast Cell Disease.
The main symptoms Cheyanne deals with are the following: highly sensitive anaphylaxis and allergic reactions (to food, perfume, lotion, cleaning chemicals, temperature changes, emotions, hormones etc); nausea; colitis; bone pain; high and low blood sugar; chronic pancreatitis; neuropathy; tremors; dystonia; presyncope/syncope (fainting); tachycardia; flushing, itching, hives; cystitis and random fevers.
About Ehlers Danlos Syndrome
Ehlers Danlos Syndrome (EDS) is a genetic condition. As it is genetic in origin, symptoms have been present for Cheyanne since birth. She initially experienced mild gastrointestinal symptoms, along with joint dislocations in infancy but, as is common in EDS cases, these were dismissed. The secondary symptoms escalated as she grew.
Presyncope began occurring around age 11. By the time she entered middle school, at age 12-13, her existing symptoms worsened. This is when she first began really seeking medical treatment and an answer for the peculiar symptoms plaguing her body. Her symptoms started interfering with her life. Days at school revolved around planning her “escape route” to throw up during class. She had to quit the softball team because coaches were not fond of the team’s only catcher fainting on the field. Then her parents had to pull her out of school, as her absences became too frequent. Friends disappeared, confronted and scared by Cheyanne’s illness.
And Now Mast Cell Disease
Outpatient appointments quickly turned into inpatient hospital stays. Doctors were eventually able to accurately diagnose her condition. Although progression continued and robbed Cheyanne of the high school experiences a typical child would have, she restarted rebuilding a “new normal” with the help of feeding tubes, proper medications and adaptations. School made accommodations to attend part time, physically attending one course a day and completing the remainder of her schedule online at home. She started meeting new friends and was managing.
Today, with Mast Cell Disease now causing of the majority of Cheyanne’s symptoms, her illness impacts her life significantly more than it used to. Life threatening reactions are triggered from practically everything. She has not been able to eat in over a year without anaphylaxis.
Everything is monitored. For example, even ordering clothes online must be hung outside and specially washed if they are shipped with traces of perfumes from the store. It’s exhausting. One wrong move and it is throat swelling, pulse shooting over 200 beat a minute, losing consciousness, and getting stabbed with an EpiPen.
Her Illness Impacts Every Facet of Her Life
I can only imagine how her illness affects her life. Every facet of her life is impacted, not least from the isolation that comes with it.
I asked Cheyanne, almost stupidly, how her illness impacts her social life. She told me “ha, what social life?!” Right now, it is extremely difficult for her to be around people. Simply the wrong perfume on a friend or passing someone with a strong detergent can lead to anaphylaxis or symptoms like organ swelling, etc.
Thankfully, she has friends, family, and a partner of 4+ years who make whatever accommodations necessary to keep her safe at home and who are prepared to contend with whatever occurs if they risk going out.
Social media must be an important social avenue for Cheyanne, hopefully she doesn’t have anyone nagging her to get off Facebook?!
Despite the exhausting effects of her illness, Cheyanne maintains a positive outlook and every day looks forward to a possible remission period as her condition waxes and wanes.
Self Care and Purpose is Important
In terms of managing her illness the best she can, Cheyanne follows a care regimen through home health with IV medications and tube feedings. She meditates and prays to relax and surrender her anxieties. She’s also learnt to listen to her body’s signs to avoid pushing herself so far that it induces a flare. She says “a healthy dose of laughter with a good friend or family member never hurts!”
She is also currently pursuing a Bachelor’s degree in Psychology at a Christian college. Her career goal is to be a Christian counsellor with chronic and terminal illness as a subspecialty. Whilst she cannot predict how her health will be after she is qualified, she is hoping that seeing clients via Skype may be a possibility if her health will not allow it any other way.
Gaining Strength from her Faith
On reflecting about her illness, Cheyanne says there are definitely moments when she resents her illness and curses the unfairness of it. However, there are many aspects in which it is a positive. Getting sick during her formative younger years, has allowed her to recognize what she truly wants in life.
Significantly, her illness has strengthened her faith in God – He who is the only constant in a world of chronic illness that is incessantly changing. Her illness has also showed her the good in humanity through the friends who stuck by her and strangers who offer their help and prayers.
Advice for Others
Cheyanne has really been tested by her illness. Given everything she has gone through, I asked her what advice she would give others who are faced with illness and how they can keep positive.
Cheyanne’s view is that a chronic illness diagnosis does not have to sentence you to a life of doom and gloom. Even if you are really sick, make small goals you can easily accomplish, like watching a Netflix show, helping a friend via Skype, sitting up in bed, or reading a few paragraphs of a book.
Choose a Positive Mindset
While you may be unable to control your chronic condition, focus on what you can control. That is, maintaining a positive mindset. Mental health can undoubtedly influence physical health. We need all of the good vibes going towards our sick bodies that we can get. 🙂
As for the future, Cheyanne reflects that any conceivable plan she has had for the future has not resulted in the outcome she ever expected. She has no clue what the future holds nor does she try to control it. Instead, and I think this is something others of us can learn, she chooses to be thankful for each day she has left to continue to pursue God’s will for her life.
She is so totally open to what comes and there’s something truly inspiring and powerful about that.