The Very Thing That Bonds Us Is Taking Us Out

Have you ever been a part of something, a club, a group, a band, a cult, a medical experiment, etc. and one day you look up and realize that the same thing that brought you together, is the very thing that’s taking you out?

Let me explain. I have Sarcoidosis. It is an auto-immune disease. It can affect any organ in your body and has affected a few of mine. I don’t go around telling everyone because it’s not something that I can or really care to explain in passing. And then I get all kinds of unsolicited advice: “if you just…then you’ll be fine”. Or, well you don’t look sick! Thank God b/c it’s all an act and I am in hell. Another reason is that people usually don’t get it until I say: it’s what Bernie Mac had. Then it gets awkward.



Had

That’s a reality check in and of itself.

I am apart of a few online support groups. We talk about day to day struggles, medicines, frustrations, welcome new members, try to identify new symptoms, new research, possible cures, possible causes. We talk about holistic approaches, becoming vegan, exercise, etc. It works for some, not so much for others. Usually, with sarcoidosis, it is accompanied with other diseases like fibromyalgia, arthritis, diabetes, ulcers just to name a few. Some of the members are family members of those with sarcoidosis looking for ways to support and help their loved ones and just learn about the disease from those that experience it.

I take chemo once a week as part of my therapy. I take it on Sundays which is why I haven’t been in a church building in a while. It makes me sick & I sleep all day (hi Mom). I also wear a sew-in a lot to protect my hair. It had fallen out really bad when I first started so I use it as a protective style. This is a dig at people who always have something to say about women wearing weave. You don’t know what the hell folks are going through so leave them be. If it’s not for you then don’t wear it. Leave the rest of us alone.

One thing is for certain, no two people have the same experience with it. We all are diagnosed and treated differently and we are all affected differently. We have different triggers that cause flare-ups. We all handle it differently. But there are two consistent themes: fear of the unknown (how the disease will progress if it does) and depression. This disease is complex and seems to still be a mystery to most medical personnel. Some doctors dismiss it and treat it like it’s no big deal & it’s all in your mind. Some doctors welcome the challenge and will learn everything that they can, with your input, to help you cope and possibly go into remission and/or live with it for the rest of your life.

It is also a diagnosis of exclusion. That means that you have to be tested for any and everything else before they say yeah, this is it. And the symptoms have to be there before they’ll even test you. They’ll just mark it as “suspected as” sarcoidosis. Do you know how exhausting that is? And sometimes, by the time that you make it to the doctor, whatever was ailing you when you made the appointment, is no longer there but something new. And they want to watch it.

For example, I had severe stomach pain for months. It was intermittent initially. Then it grew. They gave me NSAIDS (prescription Ibuprofen) for pain and inflammation which actually made things worse. It took 2 doctor visits, 2 specialist referrals, four ER visits, and a week-long hospital stay with 4 different tests before they found the ulcers eating my stomach and small intestine.

They tried to label me as a drug seeker. And if you know me, I’ll have to be in really bad pain to go see about it. And I also don’t like to burden people with having to drive me or sit at DCH with me. (Character flaw for another post).

Do you know what they gave me for that pain? Morphine.
Do you know what aggravated the hell out of my ulcers? Morphine.

 

This disease plays with your mind. Well, it plays with mine. I sometimes think I am going insane. Being in the groups, I know that I’m not alone with that feeling. We support each other fully. I’ve tried exercising mind over matter because I’ve been told that if I change my mindset, the sarcoidosis symptoms will go away.

 

I still have it lol. I am not having a pity party nor do I want one. It’s the reality of what I’m facing. Denying it doesn’t do me or anyone else any favors. I often put on a brave face and go along with my day and the usual foolishness but sometimes. Sometimes. It’s more than I can handle. I also deal with migraines. I’ve been dealing with migraines for what seems like forever. It wasn’t until some time in 2015 when I started getting botox injections that they somewhat became manageable. My migraines lasted anywhere from 48 hours to 21 days. Straight. If you’ve ever had a migraine, then you know. So, for them to even become manageable, I have to get 30-40 injections (in all) across my forehead, between my eyes, the back of my neck leading down to my shoulders every 3 months. I still get migraines but they don’t last as long. Mark that as a dub in my book (a win).

 

*Sigh* I said all that to give you a little background on the subject of this post. Sometimes you have to take a break. I love the groups and the support and being able to help calm newly diagnosed patients, sharing recipes and reveling in the success of remission or being pain-free but there are also people in the group dying. I can’t even describe how it feels to log on and see an RIP because one day, it could be someone posting on my behalf. There isn’t enough information or studies concerning the progression or remission of this disease so none of us know how long it will last or what longing effects it will have on our health. We comfort each other and send up prayers, good vibes, love, and light but the reality is, well for me and I’m sure them, is facing our own mortality. I prefer not to think of it on a daily basis. I prefer not to think of it at all. But what I do think about is – we probably wouldn’t know each other if it wasn’t for this dreadful disease so I appreciate the bonds that have been formed. I’ve met some really cool people. But we are only bonded by something that’s killing all of us.
We are all on borrowed time. Some a little faster than others but from this point on, I am going to do things differently. I don’t know exactly what that means or entails, I’ll figure it out along the way. Whatever feels good, I shall embrace. Whatever doesn’t, will have to go. Whatever amount of time that I have left here, I want to make it count. I want to experience things. I want to make the rest of my life the best of my life. So whenever I feel up to whatever, I will partake. When I don’t, I won’t. And I won’t make apologies. I’m sick of having to coddle and comfort people who have a reaction to what I’m going through, about what I do and don’t show up for, about what I can or can’t do, about what I should or shouldn’t do.
HEY, I’M THE PATIENT HERE!
Don’t get me wrong, real caretakers and loved ones are the MVPs. It takes a lot out of you to have to drop everything and rearrange your life to take care of a loved one suddenly and/or for an extended period. I salute all that fit into that category.
I am just tired of having to explain why I can’t do this or go there or that I don’t feel up to it. Why can’t my no be no? From now on, my no is a complete sentence. And it will not be followed by an explanation. My no’s have caused me to become alienated from some people. I’ve stopped getting invitations to things. I assume it’s because they assume I’m going to say no or they just didn’t feel like being bothered with me. Maybe not feeling up to attending was…offensive? Maybe my being ill made them sick??
I still appreciate the invite. It shows that you thought about me, wanted to include me, even if I couldn’t come. But I’ve made peace with it now. I’ve learned to go where I am celebrated and not just tolerated. And it’s a beautiful thing.
I am tired.
I’m beyond exhausted.

But I won’t give up.

His wife and daughter are still very active with this foundation and hoping to one day find a cure. I hope to see one too!
While you’re at it, check out my blog, Organized Foolishness, over at http://organizedfoolishness.blogspot.com/.