#autoimmune

One of my family members told me the other day that the acute symptoms she was experiencing from a cold were worse than my symptoms because I’m “used to mine.” 

Unfortunately, this is a common misconception. A lot of people don’t realize that we never fully get used to the pain, fatigue, and other symptoms that our chronic illnesses cause. No matter how well we learn to cope, our symptoms still affect us on a physical and emotional level. 

You know you have a chronic illness when… you have one or more doctor’s appointments every single week. 

You know you have a chronic illness when… your friends and family turn to you for health advice. 

You know you have a chronic illness when… your browser history is mostly medical journals, patient forums, and chronic illness blogs. 

One of the worst things about chronic illness is how it changes your relationships. 

Because you’re so tired, it’s hard to regulate your emotions. You might snap at your loved ones, or lean on them for emotional support too heavily. 

You might worry about asking your loved ones for too much help. Even if you have very supportive family and friends, internalized ableism can make you feel that you’re a burden on them.  

Worst of all, chronic illness can cause the people who don’t understand it to say very hurtful things to you or even walk out of your life entirely.

It’s extremely hard to cope with the changes that chronic illness brings to your body while coping with the changes it brings to your relationships and your life. 

It’s fitting that we’re called patients, because we need lots of patience to deal with unhelpful doctors and wait years for a diagnosis. 

Sometimes we hear stories about the really crazy things docs say to people. We thought we would share some of these, and ask you for yours. Because sometimes all you can do is shake your head and laugh…. And then find a new doctor! ~~

“You can’t have AS because in all my years practicing, I’ve never diagnosed anyone with AS.”
“My Mom is having a bad time right now. I asked her Dr. If it could be AS. He said she doesn’t have the bamboo back so she doesn’t have AS.” - (posted on our page just today)
OBGYN: “Obviously I can’t have anyone in my practice with spondylitis….”
Rheum to just diagnosed patient: “You have AS. There is nothing you can do except take medication and accept that it will probably get worse.”
“Doctor: You have pink-eye. Me: It doesn’t feel like pink-eye, it feels like someone is stabbing my eye with a hat pin. Doctor: it’s pink eye - I know what I’m talking about, I’m a doctor. (Hint: it wasn’t pink eye - anyone with AS knows what it was)”
#Truestory

VERY IMPORTANT PLEASE READ!!!

The answer isyes,they could if they don’t know you have AS. Click the link to read this article and make sure you have something on your person that says “Ankylosing Spondylitis: Brittle Spine Disease”.
And then volunteer to educate YOUR local First Responders on the proper protocol for AS patients.

Taking daily vitamin D supplements — or a combination of vitamin D and omega-3 fish oil — appears to carry a lower risk of developing autoimmune disease, with a more pronounced effect after two years, finds a trial of older US adults published by The BMJ. 

The researchers say the clinical importance of these findings is high, “given that these are well-tolerated, non-toxic supplements, and that there are no other known effective therapies to reduce rates of autoimmune diseases.” 

Autoimmune disease happens when the body’s natural defense system mistakenly attacks normal cells. Common conditions include rheumatoid arthritis, psoriasis, and thyroid diseases, which increase with age, particularly among women. 

Researchers set out to test the effects of vitamin D and omega-3 fish oil supplements on rates of autoimmune diseases in 25,871 US adults. 

Autoimmune disease was reduced by 22% in those who took the increased levels of Vitamin D with or without fish oil. And those that only took fish oil supplements saw disease decline of 15%. More research is needed to better understand the effects of dietary supplements on autoimmune disease, like lupus.

Confirming appointments like

Been put on methotrexate, really hope it works!! 

Should be starting methotrexate on wednesday.. I hope I can, Want to get better!! 

Everyone is moving on with there lives, getting into relationships, moving out, getting engaged and having babies.. What am I doing? I’m stuck at home being ill waiting for the hospital to sort out my medication, stuck in a void.  

I’ve not long finished redecorating my room, I’ve put a lot of butterflies in it because there proof that you can go through something ugly and still end up beautiful. 

I’m itchy, constantly. I can’t remember the last time I wasn’t itchy, it’s driving me crazy.
All the dermatologist have to say is, “keep putting your cream on” Well the cream obviously doesn’t work otherwise I wouldn’t of been on toxic drugs for the past 3 years. Putting cream on already irritated skin just makes it worse, even just moisturiser.. But the dermatologists can’t seem to understand that, unless I’m the only one who experiences this.
I’m tired, I don’t want to sleep because when I sleep I scratch, I wake myself up scratching, or my sheets have stook to me from blood and weeping sores so I move then it rips. It just seems never ending.
No one ever thinks that eczema can be this life altering but it is, it affects everything about my life, from not being able to go in then sun due to medications I’m on, what I eat, what I wear.. It’s horrible and nothing seems to be working to get it better. Rant over.

It’s been a long while since I last posted on here, I thought I would stop for a while as I just seemed to be getting more down, and maybe tumblr was the reason? But I can safely say it isn’t the reason. I’m back and I still feel like crap, still fighting my own body everyday as well as my own mind. I guess I just have to accept that this is life and it isn’t going to get any easier for a long while.

Once again it has been a while since I have posted on here but I am hoping that now I have an actual computer, not a laptop that I keep dropping, that I will be posting a lot more. 

Not much has gone on really, i’m still ill but not so heartbroken any more which is a good thing I suppose, finally think I may actually be getting over him. Still depressed and anxious plus ive gained weight due to being on steroids for a prolong amount of time. I keep trying to stay positive, but its really fucking hard too, I know things could be a lot worse but they could also be a lot better, I think what gets to me the most is the fact that there is just no end in sight with my illness, especially as none of the medication that they use for my condition works on me, 

When you wake up, test, realize you’re high AF, treat, and nap until you’re normal again.

If only I could do it on work days…

Copyright me, your internet diabetic dictionary :P 

Sorry I haven’t posted in so long, guys. I’ve been focusing my efforts on political action and haven’t had a lot of time to write! Anyway, I wanted to share this comment I wrote, which was picked as a top choice by the New York Times in response to the AHCA vote today:

I pay federal income taxes just like you. However, I am also sick. As a child I was diagnosed with type 1 diabetes, an autoimmune condition which renders me unable to produce the hormone insulin. Thus, I rely on injections and daily blood testing to keep myself alive. Without insurance, I need to pay over $20,000 per year to survive. I have no other choice. Without insulin, I die. That’s an unreasonable economic burden for a 24-year-old–frankly, for anyone.

The fact is, there is nothing I could have done to stop myself getting sick, just like those with cancer or many other illnesses. I was simply healthy, then I wasn’t. The healthcare market is not a free market because we, the sick, are held captive to our bodies and the medical costs that price us out of living.

A more economic example: I cover my home in case of fire, and I hope I never have to call up the insurance company. Yet, I still pay in to the system to protect my property. Hopefully, I will never have to use that money, and it will be used to pay off some other person’s insured and destroyed home instead. With healthcare, why is it any different? We pay in, hoping never to have to use the benefits, while the money goes to another. You, like me, could wake up one day and find yourself stuck with a pre-existing condition. This is why we have insurance and need the protections of the ACA.

Guys, I am sick and tired of being sick and tired. Fight back.

Our health should not be part of a free market exchange. Saving money is not equivalent to saving lives.

While you can decide to keep your house a bit cooler to lower your electric bill, you can’t have a little less chemo to save a few thousand dollars. There’s no “hey, maybe just forget the insulin so you can save for a few months of retirement money, skimp on the blood thinners or dialysis and get some pocket change for the movies.”

Healthcare is a non-negotiable part of life. So why do we rely on a system which ebbs and flows based on the number of healthy people who choose to sign up and create a market based on humans as commodities; the federal laws (looking at you, abortion ban HR-7) that cause insurance companies to choose their own financial safety over the people who need medical safety?

Don’t let this government turn us and those less fortunate than those I know reading my inordinately long post into market objects for financial gain. Call, dissent.

As always, continue to support the ACA by calling your reps or Sen. Paul Ryan–(202) 225-3031

Oppose HR7 (which bans all federal funding for abortion services, targeting the underprivileged on Medicaid as well as effectively eliminating ability to get coverage for abortion even if paying your own funds through any ACA/gov program) by calling your reps.

Hi, all–sorry I’ve been so long. 

So, do I have news for you! I officially have chronic condition #2, thought to be autoimmune. Now, in addition to attacking my pancreas, my immune system has decided to revolt against my skin. At least I’m special; less than 1% of the population apparently has this condition. Thing is, while rare toys, cards, books, or collectibles may be great, rare diseases are far less so. 

What surprises me is how much more of a toll this diagnosis was taking on my self esteem than has diabetes this past week. For better or for worse, diabetes is an invisible illness. It has far more of an impact on my life than skin changes, but I can hide my pancreas problems if I so choose (though I usually don’t). You can’t hide a skin condition, and it doesn’t make you feel pretty. It makes you feel strange, and it seems harder to reclaim as a positive in the way that I own my “cyborg parts” as a part of my diabetic identity. 

The good news is, with the diagnosis and proper treatment, I’m getting better. 

I like to imagine that my immune system is just so incredibly strong, though it may attack my body, it’s also some sort of superpower–maybe I’d be immune to a zombie contagion or nuclear fallout. Silver linings? 

Family doc and GI down, Gyno to go tomorrow.

I’m not anticipating any more follow up at the gyno, so I figured I’d post about updates now.

My GI appointment was actually pretty interesting. I mentioned the weird issues I’ve been having with perianal symptoms (itching, discomfort, pain while pooping, some really minor bleeding, and being awoken at night due to itching), and she did an exam to check for fistulae. She didn’t see anything, but did say that they can be pinhole-sized, so she ordered an MRI to check and make sure there’s nothing there.

Due to my increased frequency, the fatigue, and general malaise I’ve been experiencing lately, I’m also getting scoped at the beginning of August. She palpated my belly, and asked a few times if it hurt on my lower right (not more than usual), so she may be feeling something there that I’ve just not noticed, or have gotten used to. I mentioned that we will be trying to get pregnant within the next few months, so she said that any investigation should be done now. We can make sure everything looks good to give me peace of mind before trying, and if there are issues, we’ll deal with them. Increasing Humira, or switching to Entyvio or Stelara were mentioned.

I’ve done a round of normal bloods, but she also ordered the antibody test for Humira - Anti Adalimumab. Apparently a nurse will come to my home to do this. Hopefully, I can get it arranged for this week, before I inject on Sunday. Otherwise, I think I’ll have to wait until a few days before the injection following this next one.

Just waiting on results and test dates now. Anxious to see how everything looks.

Hey everyone! I’ve not been updating as much lately because there hasn’t been a whole lot that’s new.

Last weekend, I did my second Gutsy Walk for Crohn’s and Colitis Canada! I again made it to Top Pledge Earner status thanks to my generous friends and family, so I guess that’s gonna be my benchmark every year

This week and next, I have three appointments. I saw my family doctor today for a skin check, and he doesn’t like the look of a new mole that popped up on my fourth toe (of all places), so I’m being referred to a dermatologist to likely have it excised. Kinda scary, but I’d also rather be safe about it. So, I guess I’m now adding dermatologist to my collection of doctors, ha ha! (Seriously, I have a GP, GI, rheumatologist, ENT, gynaecological oncologist, endodontist, and I’ve also seen an infectious disease specialist in the past )

Next up is my GI on Thursday, and there’s going to be a lot to discuss. As mentioned, I’m not confident that humira is still as effective as in the past, and I’ve had some odd things going on. The random hive issue, perianal problems, and hair loss that’s returned. I’ve also had major fatigue for the past month, and increased frequency. I’m sure there will be labs ordered, and probably a scope as well. My husband and I are also (we think) FINALLY going to start TTC in the next few months. I want to make sure I have my ducks in a row before we start the process.

Monday next week I have what is hopefully my last repeat pap after my abnormal result and the colposcopy that followed. If it’s all clear, I’m good to go for only having annual paps again! Yay!

So much happening, I’m tired just thinking about it.