But you don't LOOK sick ...
“Squeezing droplets of life between the crevasses of pain, illness & disabilities. But I don’t look sick ..."
PsA & AS: The Challenges of Sero-Negative Auto Immune Diseases
With a constellation of symptoms that rivals several chronic illnesses rolled into one, and blood work that frequently refuses to fit neatly into "the box," the auto immune conditions umbrellaed under "The Spondyloarthropathies," can be tricky to diagnose and equally as challenging to live with. There are many troublesome and less than lovely symptoms which accompany both conditions, but the pain associated with these auto immune diseases may be the most difficult to deal with on an everyday basis. And, just like the majority of equally mysterious auto immune diseases, it is not uncommon to find one's body under attack by one or more additional illnesses at the same time PsA and AS is invading the body. I have certainly found this to be true for myself, and it most definitely makes functioning and living with these conditions an enormous struggle. While I have had both illnesses reeking havoc in my body for at least 5 years, I was not officially diagnosed until the Spring of 2011. I am a pretty experienced patient with several other chronic conditions, but I have a lot to learn in relation to these diseases. My hope for this blog is to share my personal challenges and experiences with others who deal with Psoriatic Arthritis and Ankylosing Spondylitis, and hopefully gain new knowledge and support along the way.
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1. The illness I live with is: Psoriatic Arthritis, Ankylosing Spondylitis, Fibromyalgia, Hashimoto's, PCOS, Spondylolisthesis in my l...
Friday, October 21, 2011
Invisible Illness Week: 30 Things About Me
1. The illness I live with is:
Psoriatic Arthritis, Ankylosing Spondylitis, Fibromyalgia, Hashimoto's, PCOS, Spondylolisthesis in my low back and neck, Degeneration and OsteoArthritis above my spine fusion & neuropathy/permanent nerve damage in feet.
2. I was diagnosed with it in the year:
I was diagnosed with my spine condition, Spondylolisthesis, in 1996. I was just diagnosed with the auto immune diseases, PsA & AS on April 11th 2011. I was previously diagnosed with the others in 2002 & 2007.
3. But I had symptoms since:
I began experiencing severe pain and nerve related issues involving my back going as far back as 1991. I started to see symptoms of the auto immune diseases appear in 2006/2007. Same for the PCOS.
4. The biggest adjustment I’ve had to make is:
With both of the major health conditions (Spondylolisthesis & PsA/AS, and all things that came with them) the biggest adjustments I had to make was learning how to live a bit slower, not feel guilty about how I felt and being unable to do everything I wanted and others expected of me (teaching myself boundaries & how to say no), and finding balance within life with these conditions & the "new" body in which I now reside.
5. Most people assume:
Most people assume that I am healthy and simply lazy.
6. The hardest part about mornings are:
Getting out of bed & "getting going" takes me a long time.
7. My favorite medical TV show is:
Mystery Diagnosis. It helped me learn how to advocate for myself and continue seeking the answers to my symptoms. It also gave me inspiration, encouragement, and a feeling of no longer being alone in my battle with my body & the medical system.
8. A gadget I couldn’t live without is:
My MacBook. I'm typing on it now! :) It's given me an outlet for my experiences and pain, connected me with people I likely would never had met, along with giving me back a feeling of productivity, success, and purpose.
9. The hardest part about nights are:
Knowing I have to start it all over again the next morning after it took so long the day before to get it together. Aside from that, I love the night. It's when I feel the best and am most productive.
10. Each day I take _ pills & vitamins:
8 different pills & at least 5 different vitamins ... I should be taking more!
11. Regarding alternative treatments I:
I find a lot of help within the arena of alternative medicine and I could not function without it! My favorites are Soma Body Work & Reiki Energy Work.
12. If I had to choose between an invisible illness or visible I would choose:
I chose neither. I would LOVE to be healthy, feel good everyday and have the energy I used to!
13. Regarding working and career:
I have a lot of anger, frustration, sadness, anxiety and fear around this subject. I wanted to do so much - and still do - but I am not at all where I wanted to be, nor anticipated I would be, as a direct result of my health issues.
I wish I had my graduate degree, but I am happy I at least accomplished my Bachelors at this point. I still hope to go back to school so that I may get my PsyD or JD ... or preferably, both!
I have many loves, a lot of experience in several fields (mainly personal life experience - including western & eastern medicine), and I believe a number of talents. My education has been in the direction of psychology and counseling, although I did dabble a tiny bit in law/political science as well, which included an internship as a Criminal Investigator. I have a counselor's license and worked briefly at a Chemical Dependency Center with children and teens, but became ill not too far after graduating from college and beginning this work.
In addition, I have a natural inclination towards the arts, design and writing ... really anything creative. In 2009 I got online and started blogging. I had began to consider the idea of writing a book about my life only a few years earlier, and blogging really helped to shape a new direction and purpose for my life as it is now. I have been able to utilize my formal education, my ongoing research around everything health and illness, my personal experiences with chronic illness, my natural abilities and inclinations as a counselor and overall sensitive/intuitive spirit, and my need and general talent for beauty & art.
While I do not professionally work today, I am making strides towards something much larger in regards to sharing my crazy painful journey with the masses ... or anyone willing to listen! :)
14. People would be surprised to know:
I played many sports as a child and loved them! I wish I could still play but my body doesn't allow for it ... especially my "flipper foot."
15. The hardest thing to accept about my new reality has been:
There have been a number of things, but two are at the top of my list. The first is knowing that I may never get to have a biological baby of my own. This one is extremely painful, and again, I am working on dealing with it today. The second is accepting that my career and my life as a young person was not, and is not, at all what I wanted, hoped for, and expected.
16. Something I never thought I could do with my illness that I did was:
Find some greater purpose for all the pain & struggle I've endured and turning my chronic health problems into something amazing ... Not quite there, but I've made huge strides and will continue to do so to the best of my ability.
17. The commercials about my illness:
I think there's one with a golf player for Psoriatic Arthritis? And of course there are a number of Fibromyalgia related ones. Aside from that, I can't think of any. And I would sh*t in my pants if I saw one about my spine condition!
18. Something I really miss doing since I was diagnosed is:
Being able to work, go to school, take care of myself, and clean my home/run errands, etc., all in the same day.
19. It was really hard to have to give up:
My perfectionism. I need cleanliness and organization in most areas of my life, but as a result of my illnesses and their subsequent symptoms, I do not have the energy and capability to do many of the things like I used to. It was really hard to let go and no longer allow it to bother me.
20. A new hobby I have taken up since my diagnosis is:
Blogging, Facebook & website/blog design ... all of which were directly influenced by my illness.
21. If I could have one day of feeling normal again I would:
Do an amazing workout; clean my house, car, even my purse, from top to bottom; go shopping; snowboard & go on a long motorcycle ride with my significant other; run as fast as I can; do cartwheels; play a soccer game; spend quality time doing activities with my family out in the big bad world; then go dancing at a club/bar with friends until the wee hours of the morning.
22. My illness has taught me:
My illness has taught me that life is not fair but there can be a wonderful set of life lessons and some beautiful purpose if you're willing and open to it.
23. Want to know a secret? One thing people say that gets under my skin is:
I have two .. sorry. "So, when do you think you're going to finally feel better?" ... When people ask "How do you feel?" .. then, when you answer, they follow it up by asking "Well, why do you feel that way?" ... as if they have not been listening for the past 5 years or more! - doctors included. It's mind blowing.
24. But I love it when people:
Read my writing and give me encouragement, inspiration, motivation and praise ... makes me feel like I'm worth something and that I'm not a complete failure.
25. My favorite motto, scripture, quote that gets me through tough times is:
"Foot Prints in the Sand" - I read this poem every single day for four plus month after my surgeries while recovering in my body cast and flat on my back. It still gives me hope and makes me cry to this day.
'One night I dreamed I was walking along the beach with the Lord.
Many scenes from my life flashed across the sky.
In each scene I noticed footprints in the sand.
Sometimes there were two sets of footprints,
other times there were one set of footprints.
This bothered me because I noticed
that during the low periods of my life,
when I was suffering from
anguish, sorrow or defeat,
I could see only one set of footprints.
So I said to the Lord,
"You promised me Lord,
that if I followed you,
you would walk with me always.
But I have noticed that during
the most trying periods of my life
there have only be one
set of footprints in the sand.
Why, when I needed you most,
you have not been there for me?"
The Lord replied,
"The times when you have
seen only one set of footprints,
is when I carried you."'
by Mary Stevenson
26. When someone is diagnosed I’d like to tell them:
To continue advocating for themselves and never doubt their intuitions. Try to find balance and not overdo things. Focus on taking care of yourself and do your very best to let go of any guilt around doing so. Learn to say no and be okay with it. Seek out others who can truly relate and have compassion & empathy, as it's so important that you feel someone understands and respects you and your new circumstance. Find something you love doing that does not deplete too much of your energy, but can distract you. Try to find humor in things ... life becomes too serious and overwhelming, and it's easy to drowned when you're chronically ill. Support & compassion are key in my opinion.
27. Something that has surprised me about living with an illness is:
How little doctor's actually know.
28. The nicest thing someone did for me when I wasn’t feeling well was:
I can think of several examples, but some of the more simple things which have been done for me when I'm feeling really icky include: my mom sending me "kitty cards" in the mail to make me smile; my fiancee warming up the down comforter in the dryer then wrapping me up & arranging the pillows so I'm cocooned; my mom running to the grocery store, pharmacy and health store for my "supplies"; my fiancee giving me feet, neck & back rubs when everything aches so terribly; my sister sending me loving text messages to tell me she loves me, is thinking of me and hoping I feel better; my dad making sure that I have money to pay for my Soma Body Work massages ... I can think of many more, but I will stop there. I am truly blessed with awesome people in my family/life & I couldn't survive without them, their support, help and ongoing understanding & love!
29. I’m involved with Invisible Illness Week because:
Because chronic illness - especially invisible chronic illness - is hard to understand unless you experience it yourself, it's so important for those who do battle some kind of chronic health problem to connect with one another and provide their mutual support. I just wish I knew it was "Invisible Illness Week" a week ago! LOL ... Better late than never I suppose! And hey, I'm used to being late these days anyways! I wouldn't be me if I weren't late! People would be shocked and confused, and I can't let them down! LOL.
30. The fact that you read this list makes me feel:
A little less invisible. Thank you!!!
Posted by Cat
Labels: Ankylosing Spondylitis, Auto Immune Disease, Auto Immune Diseases, Chronic Illness, Chronic Pain, Compassion and Chronic Illness, Doctor Visits, Health Advocacy, Invisible Illness, Medical Intuition, Medical System, Misdiagnosis, Psoriatic Arthritis, Rheumatology, Sero Negative Spondyloarthroparthy, Sero-Negative Auto Immune Diseases, Sero-Negative Auto Immune Disorders
- My interest for all things related to health & illness arises from my own struggles with chronic health conditions. I have found it most therapeutic & empowering to write about my many experiences within this realm. Through education, my own research, and my ongoing personal challenges, I am teaching myself how to become my own best advocate. To learn more about me, please see the page entitled "About Cat" located at the top of the page. If you have any questions or comments, you are welcome to contact me through the "about" section listed above, or email me at firstname.lastname@example.org. Please note that this address is also linked through my profiles. Blessings of health, energy and peace.