chronic inflammatory disease

The lack of diversity no one talks about:

Characters with:

- Epilepsy

- Diabetes 

- Psoriasis

- Rheumatoid Arthritis

- Inflammatory bowel disease (crohn’s disease or ulcerative colitis)

- Cystic Fibrosis

- Celiac Disease

- Hypothyroidism/Goiter

- Hyperthyroidism 

- Asthma 

- Paramyloidosis

- Sarcoidosis

- Multiple Sclerosis

- Amyotrophic lateral sclerosis

- Spina bifida

- Lupus 

And many more.

Nothing compares to the pain of knowing that you’re not going to get better again.

Loosing your health is really hard to deal with but you’ve got to keep pushing on.

The strongest people in the world have a chronic illness.

Yes, I have a chronic illness.

No, you cannot tell me your medical opinion. 

No, I definitely DON’T care what your cousin’s brother’s wife’s landlord did to cure it. 

No, I don’t want to hear about your miracle cure.

No, you can’t ask me what medications I’m on.

No, I won’t stop taking my medications because you said I should. 

No, you can’t take/touch/play with my mobility aids or pain management tools. 

And yes, I am just strong enough to hit you.

Having a chronic illness means having some extra “firsts” in a relationship:

The first time your partner sees you take meds, or the first time they see you give yourself injections. The first blood draw or IV setup. The first ER trip. The first time accompanying you to the doctor. The first medical procedure, and maybe the prep for that procedure. The first time they will have to assume responsibility for you after pain meds or sedation. The first surgery. The first recovery room. The first infusion or treatment. The first hospital stay. And the knowledge that these are firsts but they will happen many more times.

Not everyone can deal with all of this, be they a partner or just a friend. Some of us even have parents who can’t handle it, or don’t believe it.

I am so lucky to have found someone who has gone through all of these things with me effortlessly, and will be there for much more. And I’m lucky to have friends who “get” it.

I have to go through this, but I don’t have to do it alone.

(I posted this on Medium in case anyone wants to share it outside of Tumblr.)
Chemotherapy Isn't Only for Cancer Patients
Upon hearing the word 'chemotherapy,' most people jump to the same conclusions, with the same general consensus on how chemo works, who receives it and what side effects it has on the body. The truth is chemotherapy isn't only for cancer patients, and affects each patient differently depending on how it is used.

A great wee article. I have had to take chemotherapy drugs to treat my Crohn’s and so have many other Crohn’s warriors

When you’re nauseous after every meal and put huge effort in eating normal - people: “Can’t be that serious. Just push yourself a little harder to eat more…”

When other people are nauseous one time in ten years: “Oh I can’t eat anything else today. That’s the worst. I can never eat that thing (that made me feel that way) again.”
- me: “Welcome to my life!”

There’s a couple of stages of having a chronic disease; there’s the being sick - like suddenly you’re sick and you don’t know what’s wrong. And that can be super terrifying depending on how severe your symptoms are. Then there’s the being diagnosed part which comes along with this word chronic, which inside of it hiding there is the word incurable - which no one says out loud but which is the worst word. It means, not only has your life changed, your life has changed irrevocably.
—  Hank Green on Living with a Chronic Disease
  • <p> <b>Methotrexate:</b> so you know that food you love???<p/><b>Me:</b> yeah?<p/><b>Methotrexate:</b> it's gonna taste like metal now, forever.<p/><b>Me:</b> but how? Why???<p/><b>Methotrexate:</b> DO NOT QUESTION OR I'LL TAKE ANOTHER<p/></p>

Striving to Find the Cycle of Resolve

12 May 2017
You haven’t seen any sweaty Lycra on me in three weeks. I have been decimated by an ulcerative colitis flare and it’s taken all my energy just to run my life and attend to my cancer clients at the exercise clinic. Last night I slept all the way through and am feeling like a new normal might be around the corner. As an AEP I preach that exercise is medicine but I know first-hand how easily one can get sucked into a cycle of deconditioning, demotivation and fatigue. I’m striving to relocate my resolve to get out there now that there are signs of physical improvement, but the mental aspect of illness can be more of a battle than the physical. #smilingspoonie