Hello everyone, today we hear about Ella’s story, suffering with Psoriatic Arthritis, Irritable Bowel Disease and Fibromyalgia. Ella is an 18 years old student and chronic illness blogger.
1. Please summarise the nature of your conditions
Psoriatic arthritis
Psoriatic arthritis can develop in some people with psoriasis. However, it psoriatic arthritis affects primarily my joints. I have minor bone loss in my ankles and wrists/hands from chronic swelling, and my pain fluctuates based on activity, pressure changes, and other factors. It sometimes affects my skin, although my psoriasis is pretty mild.
Inflammatory bowel disease (IBD)
IBD is chronic inflammation of the digestive tract. My inflammatory bowel disease primarily causes pain, although it can be an embarrassing condition to deal with as a teenager.
Fibromyalgia
Fibromyalgia, causes widespread chronic pain, due to this fibromyalgia affects my daily activities the most. I have to be careful about how much I do each day to avoid crashes and pain.
2. When was you diagnosed with your chronic illnesses?
I was diagnosed with junior rheumatoid arthritis when I was four, but it was re-diagnosed as psoriatic arthritis when I was about thirteen. I was diagnosed with inflammatory bowel disease at the age of thirteen, and was recently diagnosed with fibromyalgia at the age of eighteen.
3. What are the main symptoms you suffer from?
- Joint pain
- Muscle pain
- Fatigue
- Brain fog
- Abdominal pain
- Chest pain
4. How do you manage your conditions on a day-to-day basis?
- Limiting my activity level
- My heat pad
- Medications
5. In what way has medical health care supported you?
I have been on countless expensive medications, including a monthly IV infusion, and now, a twice-monthly injection.Without health care these medications would have cost thousands of dollars, but my family only pays five dollars per dose because of our health insurance.
“Without medical health care, I don’t know where I would be”.
6. How was your journey to diagnosis to Psoriatic arthritis, Irritable Bowel Disease and Fibromyalgia?
Psoriatic arthritis
I don’t remember my first misdiagnosis, because I was only four. My parents say that I would refuse to walk when I was first experiencing arthritis symptoms. When I was re-diagnosed with psoriatic arthritis, my rheumatologist took one look at my fingernail pits and made the decision right there.
Inflammatory Bowel Disease
My inflammatory bowel disease diagnosis was really rough, and it’s still not conclusive. I’ve had three colonoscopy/endoscopies, but my doctor was never able to tell if I had Crohn’s disease or ulcerative colitis. He had mentioned when I was first diagnosed that I had some unknown allergens, but never elaborated very much.
I recently got access to all of my medical records through a new online patient portal, and the diagnoses listed in my records are as follows: intermediate colitis, eosinophilic gastritis, and eosinophilic colitis. Those last two diagnoses may be tentative, but they were never discussed with me. After reading up on them, I learned that they are often related to food allergies and are pretty rare.
Fibromyalgia
My fibromyalgia diagnosis was pretty unremarkable, which is pretty lucky. I have a pretty great rheumatologist, so it wasn’t too painful of a process.
7. What have your learnt about your conditions since being diagnosed?
Arthritis can cause bone loss and damage and symptoms unrelated to the joints, like fatigue. Inflammatory bowel disease includes Crohn’s disease and ulcerative colitis. Whilst, Fibromyalgia shares a ton of symptoms with hashimoto’s hypothyroidism, and I discovered it occurs in a lot of people with autoimmune diseases.
8. How has your chronic illnesses changed your life?
Arthritis is something I’ve lived my entire life with, but my other illnesses have changed the way I live. I have to be really careful about my diet to keep my abdominal pain at a minimum. This means no dairy, minimum sugar, and minimum processed food. My Fibromyalgia has had the biggest effect on my life. I can’t do everything I used to, or I’ll crash and feel awful. The fatigue and pain has limited my activity on a daily basis.
9. What perceptions changed since you’ve been diagnosed with your chronic illnesses?
I think that my view about everyday life has changed a lot. I’ve had to slow down a lot, and I don’t know if I’ll ever be able to live a “normal” life according to society. I can’t hustle the same way a healthy person can.
10. What information do you wish you was given when you was initially diagnosed with your chronic illnesses?
Most of all, I wish my gastroenterologist would have told me about the eosinophilic colitis and gastritis. I don’t understand why he would put those in my medical records without telling me or my parents.
11. Have you gained any new hobbies since being diagnosed with chronic illnesses?
I love ukulele, but I can’t play for long periods of times because it hurts my fingers. I have picked up cross stitching, and I enjoy drawing as well. Blogging is something I’ve picked up to do in my free time, because I enjoy writing.
12. What emotional support do you have for your chronic illnesses?
My parents have been my biggest support system, along with my brother. My brother always stood up for me when he knew I was in pain and I was too afraid to say “no“. My parents always believe me, and they always make sure I’m getting the support I need to get my education and proper healthcare.
13. What do you find are the most challenging parts about your chronic illnesses?
I think the most challenging part for me is not being able to do everything I want to do. I can’t go out for hours at a time and walk around or be on my feet. It’s difficult to keep friends when you can’t go out with them.
“I used to be a competitive alpine ski racer, and it was something I thought I would be doing forever”.
I had to quit skiing because of my health, and it’s something I will probably always miss. Losing things to my health sucks, and it’s something I’ve struggled with a lot.
14. What advice would you give to someone newly diagnosed with a chronic illness?
I would say that the most important thing for someone diagnosed with any chronic illness is to self advocate. I have anxiety, and it’s something that is really difficult for me, but it is so important. Know that you are your best advocate and know that no one will ever understand your body the way that you do.
15. What are your plans for the next year?
Next year, I am going to be a first-year college student across the country from my home. I don’t know if I’ll be able to work on top of my school. However, I’m going to continue blogging and writing, but my main focus will be on school.
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