The “sorry”

I talk a lot about my illnesses. I try to be transparent and open as possible about what I’m going through and how I’m feeling in the moment. Sure, I’ll do the customary lie, and say I’m fine or doing okay to well meaning strangers who are trying to be polite when they ask how I’m doing. But with people I know, and on social media, I try to be both honest and upfront about how I’m doing. Why? Because this is who I am.

Being ill in any way is often stigmatized, and even moreso ignored. But being ill is a part of my life, and a part that will never go away. It is a part I need to come to accept, and even embrace. My illnesses don’t define me, but they are a part of who I am; they shape my every day experiences and color everything I do. I have to consider my illnesses on all occasions, and I don’t want to be ashamed of that, or hide that. It is part of my experience. My life.

But I’ve noticed people don’t know how to respond. The notion of talking about your illnesses is so uncomfortable (especially stigmatized ones and chronic ones) for most people that it simply can’t exist.

People feel the need to offer apologizes for how you’re feeling. I get of a lot of “sorry” when I’m certainly not looking to make anyone feel bad about my experiences. And I get “sorry” is in part sympathy–and maybe empathy–a reaching out to express something because they otherwise don’t know how to respond. But sometimes it just feels uncomfortable. Maybe because I’ve accepted this is my life, I feel that you can too.

And I don’t know what response I’m looking for, if any. I don’t know what I would find preferable for someone to say to me when they are looking to express some connection for what I am feeling and wish me well… Maybe, “I hope this moment passes quickly.” ? Because “Hope you get better” or “Hope you feel better soon” sort of rub the wrong way with chronic illnesses… even when I know the intentions are kind and genuine. I won’t get better;even if after moment passes, it will return.

Do any of you other spoonies have thoughts on this? I’m sure I’m not the only one who has experienced these responses and felt these feelings. Is there any responses you prefer? And, how do we help the healthy community adopt and accept these responses?

 

Almost 2 years post-op

I had my endometriosis excision surgery almost two years ago. And it was life changing. I honestly didn’t remember how being pain free felt until after the endometriosis lesions had been cut out, and I had healed up from surgery. And that’s even with the gastroparesis pain I didn’t realize I was having.

It’s been about a year since I stopped my aromatase-inhibitor and progestin. I haven’t been on any hormonal control since.

And, I am terribly disappointed to admit, I think my endometriosis is flaring again. Either it wasn’t all removed, and what wasn’t removed has grown; or it has returned; or my possible adenomyosis is getting much worse and mimicking endo symptoms. No matter the mechanism that familiar pain is returning. It started just with my periods… the rectal pain, the vaginal pain, the ovarian pain, the sucker-punch to the gut… but now some of the pain is occurring between periods as well. That pressing, cranking, outward ballooning feeling… like I imagine one of those Medieval pear torture devices must feel, is currently making me miserable.

I knew endometriosis is a chronic condition, and that my journey with it was not over with my surgery, but I was hoping for a few more years before any symptoms returned.

Autonomic Neuropathy?

Gastroparesis is caused by partial paralysis of the stomach, via damage to the vagus nerve. In many cases this damage is idiopathic, meaning doctors have no idea of what caused it. Mine gastroparesis has earned itself that idiopathic label. But as I’ve been feeling worse, I’ve been looking into causes and symptoms of vagus nerve damage and think that the damage to my vagus nerve might be more extensive then just in the region of my stomach.

According to the Medline Plus definition autonomic neuropathy is a collection of symptoms resulting from damage to nerves in the autonomic nervous system. Chief among these nerves is the vagus nerve. And I have many of the symptoms listed on the Medline Plus site. It would explain why my pupils are occasionally different sizes, why I physically startle at even the tiniest things (like the windshield wipers I just turned on, or someone sneezing), my heat intolerance, my “not asthma, asthma”/breathing suppression, why I don’t notice I need to pee until I almost can’t hold it, why I choke on my spit so easily and feel like something is stuck in my throat sometimes, and why I sweat like I need to cure the drought.

Which, if is the case, what caused my vagus nerve to be so damaged? It seems awfully widespread to be caused by the degeneration in my cervical spine- but could that be it? Could I actually be hopeful that I could address my cervical spine (which up to this point has been blown off) and maybe fix some problems? Or should we be looking more closely for something else that could be causing damage?  I really don’t think my vagus nerve is just going to become damaged without some sort of cause…

But of course all of this requires I talk to my doctor about it- and I honestly don’t know if I have that kind of strength right now.

I hate bringing something up and getting blown off. Having tests come back repeatedly showing nothing. I hate breaching a subject and feel like I’m being judged for not being satisfied with the diagnosis I already have- like I’m seeking out more, when I really just feel like something is still unaccounted for, still missing, from the “what is wrong with me” puzzle. I hate the vulnerability of not being able to do anything if my doctor doesn’t agree with me and turns down my request for more tests or when a specialist declares they’ve done all they can for me and won’t see me again. I have insurance, I have money, I am desperately trying to do everything I can to get better, so why are you making this so difficult? Why are there so many gatekeepers in medicine, whom I must prove I’m worthy to be seen by, to be taken seriously by, to be believed?

 

Apparently I need to discuss this with my therapist on Wednesday. Hopefully then I’ll be able to approach it with my internist and maybe get back to the neurologist. Maybe then we’ll make some more headway and I won’t feel like my world is always collapsing on me.

Maybe.

 

 

 

 

Can’t get a handle on it

Every time I think I have a handle on my gastroparesis, it goes and makes me all nauseous and reflux-y again. No rhyme, no reason as far as I can tell – and I’ve been diligently tracking what I consume and any symptoms it causes.

My endometriosis became constant pain, but at least that was predictable. Having a mix of good days and bad days again is really getting frustrating.I don’t know how to handle it any more. On the good days, I feel better than I have in a long time. But on these bad days I feel like shit again, and I hate it.

And sometimes all you can do is complain about it, so thanks for listening internet, I appreciate it.

Gastroparesis Food for Spoonies: Zuppa Di Pollo

Turns out my stomach (and everything else!) is angry today. I’m not sure what set it off, but I’ve been nauseous for the past two days and today that nausea was joined by pain. The best guess I have for why things are worse now, when they were getting better and I’ve been eating much more GP friendly, is hormones. I’ve been spotty for a few days now, and imagine my period will be starting any day now; it’ll be the first time since I’ve been diagnosed with GP and eating “friendly.” Of course, time will only tell. Anyway, I’ve been feeling rather poorly, and haven’t wanted to eat anything, but know I need to. Today I decided to whip up a really simple, GP friendly soup. I think this is my new comfort food.

Zuppa Di Pollo adapted from Food

  •  4 cups chicken broth
  • 1 cup crushed macaroni, or 1 cup ditalini
  • 1/3 cup no break/egg beaters/processed egg whites (these are already whipped and processed making them super easy to use and easy to digest, plus no fat)
  • grated or shredded Parmesan cheese
  • parsley
  1. Bring broth to a simmer.
  2. Add pasta, return to a simmer, and cook for 10 minutes.
  3. Whisk in egg whites for 10 minutes.
  4. Remove from heat and pour into a bowl, add Parmesan and parsley for garnish
  5. slowly sip broth and thoroughly chew your noodles

If I ever need to go to just broth I’ll probably whisk some egg whites in, it makes such a smooth and velvety base. I hope this recipe can help you out on bad days, as much as it helps me.

Engaged Patient

I am very excited to announce that this Wednesday I will be participating  in an engaged patient discussion with Virtually Connecting.

Virtual Connecting is an awesome group that started in the educational technology world, enabling people to participate in conferences virtually and synchronously- usually through quick discussions between people at the conference in person, and people who could not physically attend. I have participated with Virtual Connecting a few times already, which has really helped me to feel engaged in my scholarship and academic spheres. To say I am excited about Virtually Connecting spanning the chronic illness, constant patient part of my life too would be an understatement.

As I have mentioned in other posts, particularly this one, engaging patients in their medical care is incredibly important to me. Its something I have actually blogged surprisingly little about, care very deeply about, and constantly annoy my doctors with.😉

I am definitely an engaged patient. It is my life, my health, and something I am actively going to play a role in- whether my medical professionals like it or not. I would love to see a medical system more conducive to medical teams than doctors handing down information and decisions to patients.

Anyway, space to participate live via Hangouts with the Virtual Connecting discussion is limited, but the session will be livestreamed – so anyone can watch along and participate in the discussion on twitter using #vcept. Let your voices be heard!