#dSavannahDefects – A is for…

A … awareness

Hi. My name is dSavannah (pronounced dee-Suh-ván-uh) and I have a host of invisible illnesses. In this here #AtoZChallenge2016, I am planning on writing about these illnesses (and others), as I told you in my theme reveal. I am doing this to raise awareness for mine and various other invisible ailments.

Obviously, there are tons of illnesses that people know about: cancer, for instance, or high blood pressure. There are also a ton of illnesses that are relatively unknown, such as CVID (Common Variable Immune Deficiency, a disorder that impairs the immune system; people with CVID are highly susceptible to infection. That means they get sick all. the. time.), which is suffered by a dear friend of mine from college, or fibromyalgia (a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues), which I suffer from. 

And there are the mental illnesses that are still very much taboo to talk about in this country, much less have. People with severe mental illnesses are likely to die 28.5 years earlier than the rest of the population, according to study published in JAMA Psychiatry and discussed this past November in a post by the National Institute for Mental Health.

Just because we look fine doesn’t mean we are fine. Just because a normal-looking mom has a disabled tag and rides a cart in stores instead of walking doesn’t mean she’s faking it. (She’s had an ankle transplant, actually, and her ankle causes her horrible pain every day of her life.)

So that’s it for awareness. I just want people to know that there are conditions and illnesses that you know nothing about. Be aware, and stop judging. Cuz being judged sucks.

* visit the site here: she’s talking about the nasty remarks she’s gotten for not losing her hair!

 … autoimmune

All of us have an immune system. This is taught in like, I dunno what grade; I was homeschooled most of my life, then skipped a few grades. But I know it’s taught!

Your immune system is supposed to protect you from disease and infection. People who have an autoimmune disease don’t have that protection, or it’s lowered. It essentially means that your immune system attacks healthy cells.

Autoimmune diseases are fairly common, but a lot of people aren’t aware of their existence. In fact, I’ve said “I have an autoimmune disorder” before, to be greeted by blank stares.

Some examples of autoimmune diseases are:

  • lupus, which can affect the joints, skin, kidneys, blood cells, brain, heart, and lungs. Symptoms include a butterfly-shaped rash on the face, easily bruising, fatigue, joint swelling, etc. Because the symptoms mimic those of other diseases, it is VERY difficult to diagnose. There is no one test that you can take that says “yeah, you have lupus”. If you are diagnosed with lupus, there is also no good treatment! Typically, it is treated with steroids, which can cause other health issues, including weight gain.

A former friend of mine has lupus, and a friend’s daughter has lupus, and the singer Seal has lupus – that’s the cause of the scarring on his face. It’s possible that I have lupus, tho I’ve never been officially diagnosed with it.

  • fibromyalgia, which I mentioned earlier. It causes overall pain and fatigue. I have this, and will talk about it more in my “F” post.
  • rheumatoid arthritis, the severe, crippling inflammation of joints and surrounding tissues. A good friend of mine suffers from this.
  • celiac disease, a severe reaction to gluten (found in wheat, rye, and barley) that causes damage to the lining of the small intestine. This is more than just an intolerance or allergy, and can cause other damage and symptoms. Hubs’ cousins have this.
  • Hashimoto’s, inflammation of the thyroid gland. A college classmate has this. This article details the trials a 12-year-old girl is going through right now; she has Hashimoto’s encephalopathy, which has made her unable to walk, given her poor eye-hand coordination, and other issues.
  • Sjögren’s syndrome, which destroys the glands that produce tears and saliva and causes dry eyes and mouth. Another college classmate has this.
  • multiple sclerosis, where the immune system eats away at the protective covering of nerves. A writer friend of mine has this.

A “fun” thing about autoimmmune disorders is that the symptoms often overlap, so not only are they difficult to diagnose, but it’s likely you have more than one. And there is generally no ONE good treatment for any of them, much less two or three.

And, these are all pretty much invisible. There’s not much of an outward sign, except if you have the lupus rash, to show there’s something wrong with you. (And if you have that rash, most people think you have bad acne and need to wash your face.)

… allergies

Interestingly enough, an allergy is actually an autoimmune response. It’s “an abnormal reaction to something that normally shouldn’t cause a reaction”. Most people think “pollen” or “peanuts” or “cats” when they think of allergies, but there’s much more than that.

Allergies can come on suddenly when before you’ve never had a problem. For instance, we were poor when I was growing up. My mother had perfected making lemonade (lemons were cheap), and she developed an allergy to lemon. My ex-mother-in-law has an allergy to chocolate (oh, the horror!), which causes her lips to swell up. Hubs has an allergy to certain nuts. I had a bunch of allergy tests done by my Ear Nose Throat doctor, which determined some of the allergies I’ve listed below.

My allergies:

  • Lidocaine (very bad reaction; acted stoned; didn’t know where I was for like two weeks; as of November 2015)
  • Penicillin (stopped breathing; in college)
  • Surgical tape (causes slight rash and itching)
  • Protein in my eye (means they cause a “coating” so I can’t see, and keeps me from wearing contacts)
  • Gluten (intolerance, not celiac disease)
  • Other food allergies, including beets, cumin, cucumber, plum, red potato, turnip, watercress, artichoke, curry powder, turmeric
  • Mold: aspergillis, candida, helminthosporium (severe; can cause insta-headaches)

Thankfully, most of this can be ‘fixed’ by lifestyle changes (no more lasagna! sniff, sniff) or simple avoidance.

… Arizona

A commenter on my theme reveal post said something that gave me the idea of sharing places where I’d like to defect to. One of these is Arizona. Luckily, I’ve been able to visit there, twice, and I absolutely loved it.

The first time was in 2009 for the first ever North American Discworld Convention, celebrating the work of one of my Very Favorite Authors, Terry Pratchett.

In 2011, hubs took me to back to Arizona to meet my other Very Favorite Author, Charles de Lint, at the Tucson Festival of Books.

Negatives: I had a low-grade headache the whole time I was there because of the low humidity.

Positives: Everything else! I loved it! My heart home is the ocean, but if there was ever a place on earth where I felt, deep in my bones, like I truly belonged, it was Arizona. I made friends there almost immediately, all of whom I’m still friends with to this day. The architecture was super cool. And the colors of the deserts! And the mountains! A photographer’s dream!

Even looking at the photos for this post stop my heart (in a good way). I want to go back. Here is just a tiny sampling of the photos I took in 2011 (for some reason I can’t find the ones I took in 2009. Darnit.):

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P.S. Because of my illnesses, I have not been able to work since December 2014. And many of my medical treatments and doctors are not covered by insurance. I have a gofundme campaign set up if you would like to donate or share. All donations and shares are GREATLY appreciated.

More ramblings / other posts you might want to read...

dSavannah

About dSavannah

~ disabled #spoonie fighting numerous, chronic, painful #InvisibleIllnesses ~ when my brain & body cooperate: #writer #editor #artist & #bibliophile ~ also #feminist #ally
This entry was posted in #AtoZchallenge2016, #dSavannahDefects, community, depression, health, illness, making a difference, mental illness, shining a light, the dark places. Bookmark the permalink.

24 Responses to #dSavannahDefects – A is for…

  1. A wonderful and thought-provoking post. Thanks so much for helping to raise my awareness.

  2. My mother had rheumathoid arthritis. I am hypothyroid. I’m also allergic to many antibiotics, which makes getting a condition requiring them fun. People tend to think – invisible disability. It can’t be THAT bad. Guess again! I shared this.

    • dSavannah dSavannah says:

      Oh, I forgot to mention I’m allergic to the typical thyroid medication too. :/ I can’t imagine being allergic to the antibiotics. (Tho being allergic to lidocaine makes dental work difficult.) I feel for you and your mother both.

      Thanks for sharing!

  3. Gareth Young says:

    Great post, DSavannah! I know it must be difficult to share things that are so personal to you. I look forward to seeing what else you have for the #AtoZChallenge. One thing though…I can’t agree about Arizona. It looks okay but the ocean life for me :D (says the guy living in the center of the country. lol

    • dSavannah dSavannah says:

      Well, I love the ocean too… A LOT. I would live there always if I could, and if all my doctors weren’t here. ;)

      I’m looking forward to what I have to say, too! LOL

  4. I’ve been blessed in that I don;t have any allergies. And misquitos hate my blood so no worries there either.

    I’m exploring different types of dreams and their meanings during the #AtoZChallenge at Stephen Tremp’s Breakthrough Blogs 

  5. leannelc says:

    I work with a woman who has rheumatoid arthritis and Hashimotos – she said that if you have one auto-immune disease you are prone to getting others – a really tough journey for her because she is definitely deteriorating at a much faster pace than she would without them.
    Leanne from cresting the hill

    • dSavannah dSavannah says:

      Hi Leanne! Thanks for stopping by again. Yes, “deteriorate” is a good word for what we suffer. I feel like I’m shrinking too! And yes, if you have one you likely have more than one – they often overlap. Not fun.

  6. Betsy says:

    Great post! Looking forward to reading all your posts this month. I have heard about some of these not so publicized items but mainly from you. Hate that you are going through this. Hoping that blogging will help you..physically and mentally.

  7. Joy says:

    What a great post! I am fighting CFS and hope you find healing too.
    joy @ The Joyous Living

  8. patgarcia says:

    You have chosen an interesting topic to write about. Many of these diseases I do not know. On the positive side, I am so happy you loved Arizona. I have been there and the time I spent there was lovely. It is a nice place to live.
    Shalom,
    Patricia @ EverythingMustChange

    • dSavannah dSavannah says:

      Hey Pat! *waves* Thanks for coming by. Yes, most people haven’t heard of any of these, so you’re not alone in your un-knowing-ness.

      I can imagine living in Arizona someday. Mebbe.

  9. Tarkabarka says:

    I have been to Arizona once, it was 116 F outside… I still loved it :)
    Invisible diseases is a very important topic, I usually cover it in class outside curriculum just because so few of my students are aware of the bias people have about them…

    @TarkabarkaHolgy from
    The Multicolored Diary
    MopDog

    • dSavannah dSavannah says:

      Thanks for covering this topic with your students! *high five*

      And 116 in Arizona doesn’t feel like 116 in Georgia – it’s a lot more bearable. :)

  10. jlgentry says:

    Thanks for writing this great post. You brought some well needed order to a confusing and misunderstood space. I particularly like the iceberg image. It makes so much sense. It amazes me that you get so much done in spite of the pain you have to deal with.

    • dSavannah dSavannah says:

      Thanks, friend! Erm, that’s actually part of my mental issues: I can’t do but maybe 1/29 of what I used to do, and it really bugs me. But I still try…

  11. Thanks for educating your readers…
    I’m not very clued up when it comes to invisible illnesses.
    Writer In Transit

    • dSavannah dSavannah says:

      Hey Michelle – thanks so much for stopping by. I’ll swing by your bloggy thing in a bit.

      Yes, most people aren’t aware that #InvisibleIllnesses even exist. I hope my words explain and educate a bit.

  12. Linda says:

    Excellent post! I live with MS and Hashimoto’s so I very much appreciate this post and the awareness that it brings. I also have a full time job trying to keep depression at bay while living with my invisible illnesses. I think one the the hardest challenges to deal with, besides the fatigue, is trying to quiet a mind that wants to do so much when my body isn’t able to keep up. Thank goodness that I have discovered blogging and that I also have a positive attitude. I can’t wait to read your next post. :)

    • dSavannah dSavannah says:

      Yeah, dealing with the depression *is* a full-time thankless job! And it does bug me, so much, that I can’t do as much as I used to. Even holding a camera hurts. :(

      I try to keep a positive attitude as well. My psychiatrist said I have so many problems, that I could be a patient she hates to see, but she actual enjoys our visits because I do my best to stay positive.

      And yeah, blogging helps!

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