Emotions that go with being a Spoonie

Fear: this is a big one. It is easy to be afraid when you are sick, and as spoonies we are always sick, but then the other stuff starts to add up quick, turning into a deep downward spiral of doom

Loneliness: Spoonies are often left out of invitations or can’t go even if they are invited. Friends ignore calls, until they have time to deal with their “sick” friend. Quite frankly, able bodied people don’t have time for spoonies so we are lonely. Spoonies get left out of a lot.

Sad: this one is easy. Feelings of sadness come for all kinds of reasons as a spoonie. It’s sad being a spoonie and watching the world go by as if it were a television show and we are just watching it.

Anger: this is a big one. It’s easy to be angry for being a spoonie. Wondering why. WHY ME???

Self-Doubt: doubting yourself due to your disability

Feeling Inferior: always trying to overcompensate, prove that you are just as normal as everyone else.

Self-Pity: it’s easy to feel sorry for yourself as a spoonie, because you feel like everyone else does.

Mad at the world: this one is easy

Feel free to add any others that come To mind or things that you have felt.

What is juvenile arthrits?

Juvenile arthrits is so much more than just pain.

It’s crying because you feel like a prisoner in your own body.

It’s locking yourself up inside your room because you feel like no one cares.

It’s constantly thinking about giving up on yourself.

It’s telling yourself you’re fine even while the tears are trailing down your cheeks.

It’s constantly answering the same question with the same lie.

It’s crying after being told how it isn’t the end of the world, and how much of a weakling you are.

It’s crying yourself to sleep because you just want to know why you had to have this, why you can’t be better, and why you can’t feel like a teenager.

But hey, at least it’s not cancer.

Simple Dynamic

Had an appointment today with the nurse practitioner who has been managing my primary care for the past two months. I called and made an appointment on Monday after I felt myself starting to slip–very likely the result of not sleeping lately and being out of the meds I use to sleep. Last night I was up until after 5am in near-agony and very reluctantly missed my first microbiology exam today.

So when I walked in there, I was visibly struggling. She didn’t rush me. She asked about my energy level and I was able to share that I couldn’t shower today because I just physically don’t have it in me to do so. She asked about my classes/stress level. She did an exam even though we knew what the problem was–you would think this would be standard procedure, but that’s not been the case for me in recent years. She tested my strength and reflexes and noted weakness. She looked at my gums. She asked about my fevers. She even asked if I was feeling okay to drive (this is frequently overlooked).

We discussed my insomnia and I explained to her that in the past, I was prescribed a muscle relaxer frequently used as an off-label sleep aide. She got on the computer, pulled up a database, and we read about the medication (along with two other alternatives) together. And then she turned to me and asked ME which I wanted. After being honest about which medicine I wanted, I asked her what she felt comfortable prescribing. I felt comfortable discussing the medications that have worked for me and she felt comfortable researching the medications she had not previously prescribed frequently.

That, my friends, is participatory medicine in action. She was able to assess my knowledge level, educate me in areas where I needed it, and perhaps most notably, she allowed me to educate her in areas where she needed it (even exclaimed that she’s learning a lot about rheumatology/rare disease–like, wat.)! We were able to communicate with each other about my needs/wants as a patient and her needs/wants as a provider. It was respectful, it wasn’t rushed. I felt like I was talking to someone on my level; there was no hierarchy in the room. The computer/technology in the room was appropriately utilized, not intrusive. It was just so…simple. Such a simple dynamic. 

Provider-patient communication: it’s a beautiful thing.

And as I left, as miserable as I was, I could help but smile thinking about how making kind of connection with people is an enormous part of why I am dead-set on PA school. :)

As patients we are so fast to criticize and publicize the negative healthcare encounters…but it’s as important (if not more so) to give praise and thanks where it’s due. 

Side note: here’s a gigantic/public ‘I love you’ and 'thank you’ to my friends for helping out today. You da real MVP’s. 

Spoonie Stigma

Everyone talks about the stigma of being mentally ill, or being part of the LGBT community. The news openly discusses racism and minority’s. But no one talks about the stigma against disabled people. They don’t talk about the subpar medical care, or making us wait longer then everyone else at the ED because the disease is chronic. They don’t talk about accusing us of being drug attics because we need pain pills even when we’re young. They don’t even talk about all the employers who won’t hire us because we are disabled. In fact they never talk about us at all. It’s as if we are as invisible
as the illnesses we have.

sdcowboy59  asked:

Can I give you a solution to chronic pain. Ive helped many. One lady came to me and had been in pain in both hips for 14 years from a car wreck. Her pain level was 10 on a scale of 1 to 10, 2 min later her pain level was 3. I helped her lower both hips to a 3. Ive seen happen for 100's of people.

Well, in a short answer, no. No, you cannot give me a solution to chronic pain.

I mean this with respect and I say this not to attack or insult you, but hopefully to educate you. I get tons of inbox questions of this same nature on a weekly basis. I’m talking 5-10 a week—everything from apple cider vinegar to prayer to turmeric and psychic energy healing.

I do not have an injury that has not or will not heal. I do not have reversible tissue or bone damage. No amount of physical or occupational therapy will completely alleviate my chronic pain. And here’s why:

I have multiple chronic, incurable diseases of the immune system that cause very serious—often life threatening—systemic inflammation. I have “failed” many of the few medications out there and remission is not likely for me personally at this point in time.

And while there are things to help alleviate some of the inflammation and chronic pain that comes with that inflammation—there is no end all, be all solution. There is no cure.

It’s extremely frustrating to receive messages like these. Suggestions are one thing, but solutions? Cures? 

I changed my diet radically: no sugar, no wheat, limited dairy. I take a whole host of supplements. I take low dose chemotherapeutic medications and inject myself nightly with very strong immunosuppressants. I exercise. I rest. I take epsom salt baths. I drink 2-4L of water a day. I don’t smoke and I do not drink much. I’ve tried acupuncture, meditation, visualization, D all of the above. 

I devote most of my day to managing my pain and taking care of myself, and you know what? I still had a tiny meltdown in my car today from being in so much pain and having a huge flareup these past few weeks.

Pain is a part of me. I hate it, but I am also at a point where I accept its presence in my life. I will always work to minimize it, to mask it, to improve my quality of life, but messages like these? They are infuriating. They are invalidating and they minimize the struggle that millions of other patients like myself go through.

If you want to find a solution, help us find a cure. We need research not just into treatment, but into etiology—help us find the cause, because we will never find a cure if we do not understand disease cause and prevention.

Pain on a scale of...

The nurses always say rate your pain on a scale of 1-10, being the worst pain you have ever felt. So being that I have a chronic pain disease, I always say 7, unless for some reason it hurts so bad I am crying and screaming, that’s my 10. But then the doctors refuse to give me anything for the pain because I only rated my pain a 7. The problem
with this is my 7 would be someone else’s 1000.

Two Words: Kineret Sucked.

I was so hopeful this injection wouldn’t be painful like Enbrel was. I was so hopeful.

And was totally let down.

It takes a lot of pain to put me in tears, but that did it.

I don’t understand why I have such terrible reactions to preservatives in these biologics. I know it’s not uncommon either. There is no way I can do that injection every. single. day. if it remains that painful.

Going to try again tomorrow and hope that it is less painful. Fingers crossed.