30 Things You May Not Know About My Invisible Illness – by Ashley Boynes

In honor of National Invisible Chronic Illness Awareness Week, which was last week, I’ve decided to take part in their meme, “30 Things You May Not Know About My Invisible Illness” since I live with arthritis and other “invisible” conditions.

This is an initiative that hundreds of “chronically ill” people are taking part in, positing on their blogs and Facebook pages to spread awareness as a part of Bloggers Unite and Invisible Illness Week.

Please read on for my very HONEST “30 Things” … and share your comments if you can relate or have anything to say or add! :)

1.)  I have more than one. In fact, over the years, I’ve been diagnosed with: Rheumatoid Arthritis. Osteoarthritis. Celiac Disease. Gastroesophageal Reflux Disease. Pernicious Anemia. Bile Gastritis. Osteopenia. Reactive hypoglycemia. Slight bilateral hearing loss w/ nonstop tinnitus. Bull’s eye maculopathy. Chronic daily systemic migraines. Adrenal insufficiency. General immunodeficiency. Anxiety. Multiple vitamin deficiencies. Bell’s Palsy. And, I have “murky” diagnoses on Fibromyalgia and dysthymia. I live with every single one of these at present, besides the Bell’s Palsy (facial paralysis) which, thank God, passed after a few months. I also have environmental allergies, and food allergies that include soy, garlic, cantaloupe, and wheat (in addition, to, of course, the Celiac Disease.)  Additionally, I have a suspected ‘fructose malabsorption’ problem. The new problems all keep on coming (such as a possible issue with my optic disc that I need to get checked out and that may be the result of acute narrow angle glaucoma) but I have faith that one day, they’ll figure out the link (it seems to all be autoimmune or relate back somehow to my Celiac and its many complications.) I keep the hope and have faith that I WILL get better. But for now, if you ask “what I have” …. I usually just keep it short: arthritis, Celiac, and a bunch of autoimmune stuff and random complications. Now you can see why. (Do you believe I feel like I’m STILL forgetting some stuff on this list? Yeah, that’s bad.)

2.) I am on one medication (Remicade infusions) that is so strong that you have to sign a “hazardous materials waiver” to take it. Another medication (Methotrexate) I take is used in much higher doses as a chemo drug. So that being said, I try to limit all the meds I am on and refuse to take pain pills. So, even on the worst arthritis-and-migraine day, I do not reach for a Vicodin or Percocet or even a Tylenol or Advil. I just deal. I have to limit steroid intake now due to adrenal problems that they caused, so, I can’t even reach for Prednisone or Hydrocortisone anymore to calm RA flares. Sometimes, you just have to “play through the pain!”

3.) Being sick is expensive & to make it worse, at present, I’m now unable to work full-time.

4.) Some of my problems are autoimmune which means my body attacks itself. My immune system & those cells are attacking “good” tissue (i.e. joint tissue for the rheumatoid arthritis, intestinal lining for the Celiac, etc.) and also just causing a weakened immune system overall and general inflammation throughout my body.

5.) I have, on average, 1-3 doctors appointments every week. (In addition to sometimes going to the chiropractor/myotherapy/etc.)

6.) There is almost always something “off” with my bloodwork but never “off enough” for them to take action. Always a, “let’s monitor for now”, wait-and-see, no-change-of-treatment type thing. That being said, I hope my doctors all know what they are doing! But, as patients, we have to trust that they do :)

7.) Through having all of these conditions and being a health/wellness blogger and working with the Arthritis Foundation, I’ve learned a lot. I should probably just go back to school for nursing, and if I ever in a million years felt well enough and physically able to, I might consider it, since people come to me with health questions ALL THE TIME … and I can answer A LOT of them. (Correctly)  Or, I’ve thought about taking classes to be a holistic health counselor….but I’m sure that some of my medications would be frowned upon in that field ;)

8.) Referencing #7, I actually DO find it all interesting, though. (Just wish I wasn’t personally living it lol!)  I’d rather be “in the know” regarding health and medical facts rather than clueless. Having lived with health problems for most of my life, I actually take interest when someone I know gets any kind of medical diagnosis because I’d rather know what they are going through than remain ignorant.

9.) I get slightly annoyed when 90% of people tell me they have arthritis, too. You might. But most people have osteoarthritis (which I also have) but which is completely different from rheumatoid arthritis. They aren’t the same thing. OA is the “wear-and-tear” type – sometimes caused from “old age.” Rheumatoid Arthritis can be severe and debilitating. If you don’t know the difference, please look it up. RA has a lot of complications and affects your entire body, organs, etc. It is an autoimmune condition and not just pain and stiffness. “Everyone” does NOT have arthritis, specifically rheumatoid arthritis. There are 117+ different types of arthritis and rheumatic disorders; these are unique from one another, affecting every patient differently. (Even children get arthritis!)

10.) Celiac Disease is NOT the same as a wheat allergy. Likewise, a gluten-free diet is not some “trend” or “fad diet.”  For some of us, it is a lifeline. Again, look up the facts…..ESPECIALLY if you work in the food industry or health care!

11.)  Making fun of anyone with a disease or disability = not cool.   Grow up, and grow a heart while you’re at it. Please.

12.) All of my doctors tell me that I’m a “complicated case” and usually joke that I’m a “medical anomaly.”  (It isn’t funny! lol)

13.) I’m not dumb – I know that 90% of you who ask “how have you been feeling?” could not care less. I realize that the majority of the public and even my friends and family are just asking to be polite.  So, for the most part, I’ve cut down my answers to “ok” or “hanging in there” …. but if you REALLY want to know, you’ll take the time to email, call, or have a real conversation about it. I can’t answer the “how are you” the same that you guys would, without lying. But, I’m trying to train myself to do so. A very real quote that I recently read: “Though the seriousness of your illness is significant under your roof, it isn’t that important to others.”

14.) A lot of this stuff is stuff that I’m dealing with a lot of the time. So, sometimes I forget things that aren’t as “high up” on the priority list, and, sometimes, things go on the back burner. Being chronically ill is literally like a full-time job, and, it takes a lot out of me. Sometimes, as hard as I fight back against my body, it still wins, and I’m left being a lazy bum all day. I hate it, it frustrates me, I like to stay busy, be social, stay active/productive……but, listen, it just isn’t happening some days. At least a couple days a week. That’s my life, I’ve accepted it, I ask you all to, also!

15.) Oprah – one of my idols – said recently that sometimes we all have to learn to “lean into the pain” …. meaning to just let ourselves be sad about something & “give in” to it temporarily. This is a new method that I may try. I’ve felt so much pressure to always “BE POSITIVE” but …. it treads on seeming fake sometimes. I think a balance and being a REALIST is much more healthy and credible. (Though keeping that a positive, hopeful, and optimistic attitude is vastly important! Just don’t let it cloud your perception of reality, and, allow yourself time to be sad or down – we’re all HUMAN, after all, and we need that! We all need to vent.)   Another quote from Oprah that I love? “The ability to triumph begins with you. ALWAYS.” So, I try to keep that in mind, too.

16.) Yes, I’ve tried the supplements, the vitamins, the herbs, I read all of the Natural Health magazines, I have tried ayurveda, and acupuncture, and myotherapy, and chiropractic, and physical therapy, and massages, and a juice diet. I’ve tried eliminating dairy, and adding anti-inflammatory foods, etc. etc. Yes, I’ve tried it. I’ve looked into cleansing, oxygen chamber therapy, and energy correction therapy. I know about the alternative treatments that are out there, and, while I wouldn’t give up all of my medications (the last time I did that, I got sent into this lovely spiral) I DO like to take an integrative approach with using some natural/homeopathic/alternative therapies in conjunction with my traditional medical treatments. That being said, refer to item #3 ~ being sick is expensive, and health insurance covers none of the above except chiropractic/myotherapy. I wish I could DO IT ALL (anything to get better!) but, right now, I can’t!

17.)  I’ve written a kids’ book about juvenile arthritis that maybe, MAYBE, I can get published someday. Anyone want to fund it?

18.) I am very strict with my gluten-free diet. I use a separate toaster from my fiancé to avoid cross-contamination of his (real) bread with my (fake) bread — even the littlest crumb is bad for me. I have done all that I can to make sure that all my meds are gluten-free, and even my shampoos and cosmetics. I wash my hands after even a chance of touching a crumb or coming in contact with the evil GLUTEN and I’m borderline OCD about it. Despite all of that, I’m still not responsive to the gluten-free diet.

19.) I was seen at the Mayo Clinic in Minnesota in January. While they ruled out a lot of stuff there, many of my doctors here have done/found more, or just as much. (But the Mayo Clinic had some beautiful art, a neat museum,  and some yummy gluten-free restaurants, as well as very friendly doctors.)

20.) You all might not realize it, but being chronically ill takes a HUGE HIT on your self-esteem. Remember that when dealing with your loved ones. I often question my self-worth now because of all of this. I talk myself out of it, but I carry a huge amount of guilt and frustration. I also suffer from anxiety as a direct result of my health conditions.

21.) I have found that helping others and doing nice things for others boosts my spirits and helps me feel better. I’ve tried to turn my negative situation into something positive. Through working with the Arthritis Foundation, and also the Living Well with Illness blog on wowOwow.com. I also moderate Arthritis Ashley and Rheum to Grow here on Facebook, and, @ArthritisAshley on Twitter, as well as the Ning network page, “Kids Get Arthritis, Too.” A lot of people have said that I’ve been a huge support to them, and, they have been a huge support to me, likewise. I’ve thought of starting up a local RA Women’s support group or one for people w/ Celiac, but I’d like to get myself on a bit healthier track first, so I might start it off virtually, first. It is really rewarding to have so many people come to ME for advice and insight. I’ve also been nominated as one of the Top 50 Most Inspiring Health Tweeps on Twitter, and have gotten several blog recognitions for my work with the Arthritis Foundation blogs, etc. TRY TO TURN NEGATIVES INTO POSITIVES – it helps! A lot! :)

22.) As you can tell, I’m an open book about my health. Some people think that it is oversharing, or seeking pity or attention – but it isn’t. As many my peers can tell you — it’s about AWARENESS and also supporting others who are living lives just like mine!! You aren’t alone :)       I also want my family/friends to know that, I’M STILL ME — but this is what I’m going through, and I’m always honest about it.

23.) I do not identify myself as the sick girl. I think of myself first as a writer, a creative and intelligent, witty person, a loving and sweet individual, someone who is very into fashion and pop culture, who loves dogs and has a soft spot for all animals, who likes to talk, laugh, and smile, and who loves the Steelers. I don’t WANT  “sick” to be my identifier. I’ve tried to separate my health/wellness Twitter & Facebook accounts (except for important posts like this) from my personal one for this reason. When we hang out, I do not WANT my health to be all that we talk about. Unfortunately, it usually leads back to it somehow. I’m happy to give you advice or tell you about it if you really want to know. But also keep in mind that sometimes I want to be normal!

24.) Referring to the previous statement, actually, being normal is ALL I WANT!!! But, as another one of my idols Lady Gaga says, “God Makes No Mistakes….Baby, I Was Born This Way!

25.) Please do not assume that I am unable to hang out or do things socially. Please do not assume that I do not want to. Just because I sometimes have to cancel or may have in the past, does not mean that I am unable to every single time. I am still me. What are you afraid of? I’m not contagious, and, if you take the time to hang out with me, I’ve 4875498575 things to talk about OTHER THAN my health. Ask my fiancé – I talk his ear off and he could use a break. My point is, I still have some friends who are there, but others have seemingly abandoned me – “coincidentally”, as I got sicker. Why? I don’t know. But to all of you – if you have a friend who is going through this stuff – don’t forget about him or her!  And don’t assume anything about me. Sometimes, you may be right, but most of the time, I will surprise you!  (Oh yeah, and let me reiterate: I really am NOT contagious lol. None of the things I’m dealing with are, in any way.)

26.) I do not want to live like this. I do not want to be this way. I did nothing to deserve this, and I did not bring this upon myself. A positive attitude is important, but you can’t just think yourself out of diseases that are real & there & that truly exist in your body. I’m strong, I try to remain positive, and, aside from this health crap, I have a very blessed and lovely life in which I’m very happy. So, a positive attitude helps massively, but, happy doesn’t ALWAYS equal healthy. Food for thought .

27.) You are not me, so do not judge me until you walk in my shoes. (Which, I PRAY that you will NEVER have to do.)

28.) Oh goodness – let me just say it one more time as I’ve said before: MIGRAINES ARE NOT JUST BAD HEADACHES. I repeat: migraines are not just bad headaches! Again, if you have this belief, utilize Google or, better yet, go to the library and read up on it. They’re miserable and excruciating, affecting the entire body, and I get them very, very frequently. (Usually, if I’m in a really foul mood – that’s why!)

29.) I know that exercise is important. Physical activity is “the natural pain reliever” for arthritis, and, studies show that teens with fibromyalgia have less pain when they are active and exercise daily. Also, exercise is shown to even help with the migraines. I try to exercise somewhat, but my version of exercise isn’t the same as most of yours. I do yoga here and there, and, I walk my dog. Sometimes I will swim. That’s about it. Some day, I want to start hitting the gym again to do a bit more, and maybe take a dance class. I feel like it’s going to have to be sooner rather than later with a June wedding approaching (hehe)…..but, it’s really hard for me. A part of it is FEAR. I know the pain that I may endure after a very intense workout, and, that terrifies me. I’m also really afraid of hurting my knee worse than it already is. Additionally, sometimes the migraines/fatigue are just too severe. But, I do try to do stretching, yoga, walking in SOME form almost daily if I can. My doctors seem to think it’s enough…….someday I hope for it to be more!

30.) These illnesses do take a toll on people emotionally. People tend to forget that. Most of all, we want COMPASSION. So many people are so insensitive, selfish, and wrapped up in their own little worlds to even consider what other people are going through. Other people have misconceptions and preconceived notions about certain conditions, or about people with chronic illness. Or, they are just clueless….and, I’m sorry, but I’ve never found ignorance to actually be bliss. Remember that even though I – and others like me – may “look” healthy and normal (to an extent) – that we are battling serious conditions that affect our every day quality of life and that could lead to very serious complications. (Unresolved Celiac can increase your risk of intestinal lymphoma up to 30x greater than the average person. RA patients have increased risk of heart disease and cancer. Some of these things can affect fertility. I may need to get a biopsy on my esophagus because of reflux. I need a knee replacement before I’m 30. This stuff has affected my vision and hearing slightly. And so on.)  So understand that these aren’t lighthearted things, it isn’t “in my head” and I’m dealing with some issues that I never thought I’d have to deal with at such a young age. So remember that while I might look okay, and while I am a strong person, it’s all taking a toll physically and emotionally, and, even if you aren’t a “friend” to me, all I ask is that you BE A FRIEND to someone else going through a similar situation! Be mindful of their situation. Be compassionate. Be aware. Just be there.

Lots of love, smiles, and hugs!  Stay strong, stay positive, and remember even a bad day is a GOOD DAY to be ALIVE!!

“LIFE: it’s painful, sometimes it’s beautiful, but most of the time… it’s both.”

Let’s spread awareness about the different types of arthritis, chronic conditions, and, especially illnesses and ailments that are “invisible” to others.

Please leave a comment if you can relate!

Stay Well,

Ashley Boynes

8 thoughts on “30 Things You May Not Know About My Invisible Illness – by Ashley Boynes

  1. Miss Ashley! You’ve done it, you’ve brought me to tears. I loved this blog!! I can relate to soo much of it. You said you are kind of OCD about gluten, I’m kind of OCD about chemicals! And migraines, ugh! NOT just a bad headache, thank y…ou very much! I was diagnosed with inflammatory Polyarthritis last year. Not just arthritis! Lab test says indistinguishable from RA. I’d trade it for my mom’s OA any day.
    I try to keep a positive attitude, sometimes even joking about things, such as my feet changing colors due to Raynaud’s. My daughter and I keep a close eye on the colors, in case we want to color-match at Home Depot and paint the walls!

  2. Ashley, thank you for a great read. Think I’ll tweet it! There were so many of those numbers up there that I identified with. I really love this meme and am so glad Lisa created it. At first I thought it odd to do the same one year after year, but I learn so much every time I read one! It’s so good to find we’re not alone, and someone else’s brain is thinking the same durned thing every day ((Hugs))

  3. Oh, dear, brave, honest, loving, kind Ashley–

    As promised, you put it all out there. How I wish I couldn’t relate! No idea what you’re talking about-friends that disappear and self-esteem that follows behind them.

    The power and necessity of positivity coupled with honesty. It would be insane to be happy all the time with so much hurt and natural fear going on with us. I like to say, “I’m not crazy. I’m depressed and anxious.” Of course I am! I am constantly evaluating my energy and pain levels and trying to exercise and eat. My life work could be just surviving.

    But the joy of service! *happy sigh* How I love helping others!

    I also answered the 30 Questions, but I didn’t engage as deeply as you did. I honor your courage and thoroughness. You are an inspiration, and I look forward to voting for you in the future.

    Thank you for YOU,
    Juliana

  4. Ashley,

    I have to give you alot of credit for keeping on going forward. That takes alot of strength and guts to keep that positive attitude! You have proven that you can do anything, as long you can keep on keeping on!

    I’m considered disabled because I have a slow cognitive process that doesn’t allow me to absorb information at a normal rate. It is very frustrating since I was always being called painful names during my teenage years. Reading comprehension is my main weakness, since I couldn’t properly obsorb or do any of my homework well. By the time I started college, I pushed a 10,000 pound rock up a steep hill to override my brain. To this day, it is very hard to overcome that problem. My longtime sweetheart, Dee, has Cerebal Palsy and uses a wheelchair, she doesn’t let her that disability get in the way of living her life.

    I also can’t stand hypochondriacs those who “think” they have it bad when it’s only psychological based pain, not medical related. I know alot those type of people who uses it as an excuse not to pursue or live life. Alot of that energy that goes around can drain anyone’s good day.

    I have more respect for you now Ashley, and I wish all the best of your health and I know for a fact that you will go very far no matter which road you are going down. And the one line I will always remember is “You are not me, so do not judge me until you walk in my shoes.”. And ‘Making fun of anyone with a disease or disability = not cool. Grow up, and grow a heart while you’re at it. Please.”

    Living life is much harder with having challenges like that, it is not always sunshine and rainbows. At the end of the day, it makes us all stronger and thankful. Too many people take things for granted I always beileve.

    Thank you for that article, god bless you!

    Best,

    Matthew R. Cywinski

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s