Hello Everyone and welcome to another Confessions of a Spoonie. Today Lisa will be sharing her story with us so without Further ado, here is Lisa’s confession.
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1. My conditions & Age of Diagnosis.
- Chronic Migraines with Aura – 45
- Ehlers Danlos Syndrome (Hypermobility Type) – 52
- Mast Cell Activation Disorder – 54
- Orthostatic Hypotension – 53
2. Main Symptoms
Pain, headaches, dizziness, nausea, itching, blurred vision
3. Three things I’ve learned
I’ve learned that many symptoms can overlap between diseases. I’ve learned that because two of my conditions are considered rare, I was diagnosed much too late in life. I’ve also learned that treatments for rare diseases are very poor and side effects are worse than the disease.
4. The hardest Part
The hardest part of my illnesses is that I am not able to get up and live my life. Too much of my time is spent on the couch, resting.
5. Things I hate hearing
I hate hearing: “Are you better, yet?” “Have you tried * inserts their favourite cure*?” “It’s all in your head”
6. What I wish people would say instead
“I learned about your condition on the internet” “Have you had a good week?” “I’d love to come over to visit”
7. My trick to get through the day
Pace myself and resting when I need to.
8.New hobbies I’ve picked up since being diagnosed I didn’t expect
I never thought that I would become a blogger, but it has been wonderful. It keeps me busy and productive. Blogging brings me friends, too!
9. Do I work or study
I don’t have a job. I completed my online master’s degree in bed. Now, I blog about chronic illness and homeschooling.
10. My plans for the future
I hope to keep blogging and doing all I can to love and serve my family.
11. Is there anything I would have done differently
If I had known that pain would rule my life, I would have chosen a different career. I majored in music, but can no longer play instruments, because of pain.
12. My illness has taught me
Life doesn’t always go the way you planned. It’s important to be content in your circumstances, because God can bless you anyway.
13. Advice I wish I revived when diagnosed
When I was first diagnosed with Ehlers Danlos Syndrome I wish that I had been told that pain clinics offer mild pain drugs only. These drugs don’t help at all with Ehlers Danlos Syndrome. They barely do anything for the pain and cause terrible side effects.
14. My advice to you
My advice for people diagnosed with Ehlers Danlos Syndrome is to keep searching until you find a doctor who treats this condition. Don’t be satisfied with a doctor who is uneducated on EDS treatments and outcomes.
- Stay tuned as I will be back posting on TUESDAY and SATURDAY more Confessions of a Spoonie!
- Also Amy is back in control of her blog so make sure you head over there to catch up on what’s been going on at her end!
Blog you later »