Monthly Archives: August 2018

Bodily functions…it’s not fair

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How interesting are our bodies? I mean, seriously… all these organs and systems performing bodily functions without us ever having to put much thought into it at all. Other than knowing we need to  eat, drink, use the bathroom, exercise, brush our teeth and such, we can pretty much live our day-to-day lives without worrying about our body parts functioning they way they are supposed to. Pretty easy to take this sort of thing for granted. That is, until you realize your body isn’t functioning correctly anymore.

I have two rare disorders. Well, I don’t think they are so much “rare”  as “rarely diagnosed”. I spent my entire life with symptoms no specialist could explain. After having a rheumatologist coldly ask me, “why are you here?” and telling me, “You’re looking for a unifying diagnosis for all of your symptoms and you aren’t going to find one”…and having another doctor tell me that I should consider going on an antidepressant, I just stopped complaining. I knew whatever I had wouldn’t kill me, as I’ve made it this far. So, I stopped reporting any symptoms at my visits and resigned myself to a life of chronic pain, allergic reactions, worsening eyesight, severe digestive issues, pre-glaucoma, two heart arrhythmias, insomnia, frequent joint dislocations, chemical sensitivities, dizziness, shortness of breath, light-headedness, weakness, fatigue, dental problems, metabolic syndrome…I’m sure I could elaborate more, but I’m sure you get the picture. The thing is, even though I resigned myself, in my early 40’s,  to living this life, I just KNEW there was a diagnosis somewhere. It’s just not normal for someone that young to have so many medical problems that are not explained.

So, I researched. And I researched. And I researched. It seemed hopeless, but there was nothing else to do, so I kept plugging away, losing hope day by day. Until one day…

I came across an article written by a doctor describing my EXACT journey! I cried reading it. He was describing me. I wrote to him, telling him just that, along with describing my symptoms and years of being told there was nothing wrong with me. This amazing man actually wrote back to me, stating it did indeed sound like I had Mast Cell Activation Syndrome. I took his letter, along with some other research I’d found and brought it as a presentation to my allergist, who then referred me to the Mast Cell Clinic at Brigham and Women’s hospital in Boston, where I finally received the diagnosis and am on a medication regime which has greatly improved my quality of life.

However, not all my symptoms were due to this new diagnosis. Mast Cells have nothing to do with dislocated joints, severe pain and a few other weird things about me.. So, I did a little more research. OK…I did a LOT more research.  I kept going until I found another article, describing a disorder that is commonly diagnosed with Mast Cell Activation Syndrome…Ehler’s-Danlos Syndrome. It’s a connective tissue disorder which results in faulty collagen. I took myself to a geneticist in Boston who upon meeting me stated, “You obviously have some type of connective tissue disorder”. I laughed. “Obviously! Let’s tell that to the 25 doctors I’ve seen before you who told me I was crazy!” I tell ya, even though there is no cure for these two disorders, the validation of a diagnosis is kind of healing in itself.

Unfortunately, my two sons were just diagnosed with connective tissue disorders a few weeks ago. And even more unfortunately, theirs looks to be affecting their vascular system, putting them at risk for ruptured aneurysms. We are still in the diagnosing stage, in regards to determining which type they have. It’s one thing for me to have this crap, but for my boys…that’s a whole other story. It’s not fair. I’m scared. I hate that I gave this to them. I hate that they had to have echo cardiograms last week and will have to have them frequently for the rest of their lives. I hated watching my oldest son’s face as the cardiologist described his enlarged aortic root. I hated watching my youngest son’s face as the geneticist pointed out the physical characteristics of Marfans’s Syndrome…of which he has many. I hated listening to my son nervously whispering, “I hope I don’t have to have surgery on my heart”.  I hate taking my kids to the chiropractor every few weeks to push in a dislocated joint.  I hate that my son had to quit playing high school basketball because his shoulder won’t stay in place and his body won’t function the way he wants it to. I hate him being in pain…much more than I hate myself being in pain.  I’d take all of his pain and add it to mine in  a heartbeat to keep him safe. That’s how moms roll…

Wow, that was sort of a venting session there. Sorry. I don’t hate much in this world, but watching my children suffer…yeah, I do hate that. However…

…life goes on….

 

 

The Friday Reminder and Prompt for #SoCS August 11/18

 

 

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Calling for a miracle

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I haven’t written on here in a while. I suppose in some ways, that’s a good thing. I really started this whole writing thing as a way to process the difficult things in my life. Almost like writing was a calling…I would feel an overwhelming urge to write about certain things and then somehow felt better afterwards. I haven’t felt that way most of this year, hence my absence on here.  I sort of found a place of contentment and I’ve been doing my thing elsewhere.

So…I’m back. You just never know when you’re gonna get that calling, you know?

I felt the urge to write the other day. I spewed it out on my Facebook page before going to bed, after a few weeks of feeling discontent. I’ve got hundreds of people I actually know on Facebook. Putting my shit out on the line there is a lot more risky than putting it on here. It’s vulnerability at it’s finest.

My inner demons, who had been so well tamed this year, kind of crept back up on me. Almost out of nowhere, yet almost like they were there the whole time. I know, that sounds confusing. That’s because it is. I’m in the middle of an endless struggle to accept the loss of some people I love, all because I have told my story. Not everyone can handle this kind of shit, so instead…they let me go. And I’ve been pondering ways to get them back.

These past few weeks, I was feeling angst. Turmoil. Insecure. Unlovable. These are my inner demons, and when they rise in me, it usually signals I’m on the verge of a change in my life. I never do know what that change is going to be…

This is what I wrote:

Facebook reality check:
I post some pretty amazing photos of some pretty amazing experiences, don’t I? I just scrolled through my page and it looks FANTASTIC! I tell you what, I most definitely am GRATEFUL for the blessings I have in my life. But if I’m going to keep it real here…it’s not all sandbars and sunflower fields. I have to work really hard at having these amazing experiences, because life doesn’t just happen that way naturally. Life shits on me a lot… as I’m sure it shits on you, too. It’s like a checks and balances system. You gotta go through the bad in order to appreciate the good. And sometimes, it seems as though I create the messes in my life myself, just as a byproduct of the other messes I’ve lived through. Like I can’t get out of my own way…out of my own thoughts, sometimes. We all have our inner demons, don’t we? I know I’m not the only one who struggles with negative feelings regarding the self. We surely all have them, at one point or another, some more frequently than others, some not. All caused by different experiences, though the details don’t matter, as the feelings are the same. The difference is in how we deal with these feelings. My “Plan A” for dealing is the tremendous amount of time I spend on self-care. You know, all these “amazing” experiences you see on here, and my meditation and my faith and my writing and my reflecting and my service. And it works…for the most part. But not always.There’s always an underlying struggle in my soul. Because, you know…life keeps shitting on you. Or something happens to remind you of the old shit. Or maybe YOU decide to uncover the old shit, just because you’re human. Maybe that old shit never really does go away, you just have to learn how to live around it. Or maybe it’s new shit. Whatever. I’m sure I’ll never figure it out. All I know is, today I was not feeling like the amazing, empowered, enlightened Jami. My inner demons have been creeping up this week…feelings of insecurity, difficulty with acceptance, awareness of broken places…put whatever demon you choose in there, it will fit. This is the underlying struggle. And when I feel like that, I feel like a fraud. I look at what I put out to the world and I feel like I’m trying to pull a fast one over on everyone, which is funny, because I honestly do not care what anyone thinks of me. Maybe what that feeling really is, is that I’m trying to pull a fast one on ME. So, what do I do then? I write it all out. I put it ALL out there, for whoever is bored enough to read this much on a Facebook post. This is my “Plan B” for dealing with life…being honest and vulnerable. Somehow, stripping myself to the raw core of who I am…exposing all my flaws, my insecurities…my brokenness…somehow, it cleanses me. Almost like being baptized. I spent my entire life stuffing things down, hiding the real me from everyone, including myself…for fear of no one accepting me, or not feeling loved, or whatever the struggle is. Maybe it was really more a fear of me not loving myself. Fear keeps you from being brave. When you strip it all down and show the world the not so amazing parts of you, there’s really nothing left to be afraid of. It’s uncomfortable to do this, yet at the same time…freeing. This is how I am brave.

Hey, you have your methods, I have mine…but, I’m willing to bet a piece or two of this sounds familiar to a few of you.

It works. I haven’t even hit “post” yet, and already I’m feeling a little absolved. The struggle has softened. I think I might do something amazing tomorrow…

It’s funny how listening to the call and writing it out changes my perspective almost immediately. I’ve read that miracles are really just a change in perception. I purged that angst and now I’m back (hopefully) on the path to contentment, with a few changes. An old friend read my post and felt called to offer me a Harmonyum treatment (similar to Reiki, but not…you’ll have to look it up). I felt lighter walking out of there. I visited a friend I’d been meaning to see but hadn’t gotten around to lately. I said “yes” to a few dates I’d been saying “no” to. I got caught up on a few things I’d been avoiding in my life. I started meditating more. And I made a conscious decision to try to stop getting people back into my life who don’t want to be here, no matter how much I love them. Again. Will it stick? Who knows? All I can do is make the intention for today, and we’ll see what tomorrow brings. In the meantime, I’m enjoying the change in perception.

 

 

 

The Friday Reminder and Prompt for #SoCS August 4/18

 

 

 

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