Monday, January 10, 2011

Tie Me In Knots; I Won't Come Undone

“Our lives begin to end the day we become silent about things that matter”

- Martin Luther King, Jr.

I have the right not to remain silent. Hence, this post will emit all of the things and feelings I have been dealing with over the past few months.

Thanksgiving was terrible. Christmas was non-existent, and I already feel like the first days of 2011 have flown by without me noticing.

I’ve felt a bit guilty about not sharing recent events with my readers, but I didn’t want to seem like a complainer. And I didn’t know how to talk about it all in a coherent way. So this post may only be semi-coherent.

The last few months have been filled with more calls from doctors, doctor’s appointments, and tests than I care to remember.

I had more disagreements over appointments with the GI people, I had to contact patient relations again, and I was finally told by someone in GI that I wasn’t being treated properly and that the way I was being treated goes against protocol.

In between the other chaos, I got separate calls from my rheum’s and GI’s office telling me that separate labs had come back abnormal. I was taken off Methotrexate. I am back on it now, on a lower dose. That which does not kill you, right?

I also had a defecography and colonic transit test. While it’s amazing how comfortable you can become talking about the inner and outer workings of your gut, I’ll let you discover exactly what these tests entail on your own, if you so desire. I will say, however, that the colonic transit test is a weeklong commitment. And what a commitment it was.

I don’t know how people that have mainly GI symptoms associated with their illness(es) do it. It is exhausting, embarrassing, and disabling, not knowing how your body is going to react, and not being able to trust that it will work properly.

On the one hand, my life has been overwrought with health stuff. On the other hand, I have found myself on the other side of things.

I won’t say too much about the non-health stuff because it is not really mine to tell. But it has been like watching a speeding train derail, and not having any way to stop it. Now I know what it feels like to be in the position of those around me who have had to deal with my illnesses and have no way to really help me.

I’ve also learned that you never really know what is going on in someone else’s life or home unless they tell you about it. You can think that these are the happiest people in the world, and their lives could be falling down around them.

How much can one person take?

I wish there wasn't a before and after. I wish there was just life, and a life that wasn't always spiting and thumbing its nose at me

I have a feeling that this might be one of those posts that I look back to and shake my head at, wondering how I really could have been feeling this low. But right now, I am, and the only way I can really think to help myself is to write the hell out of it.

Honestly, I’m pretty convinced that these people don’t know their head from their butt, and given that they are GI people, that definitely isn’t a good thing.

And does it make sense to anybody that my two and a half day hospitalization was billed to my insurance as outpatient care, which meant that I had to pay for part of it?

I am also sick of living in a country where people who are down on there luck get no compassion whatsoever.

I didn’t really make resolutions this year. Mainly because what I would really like to do is go into bed, put the covers over my head, and not get out until all of this crap is over.

I am exhausted…already…physically and emotionally.

I ran into my GI doc at the hospital, on the way to my volunteer post, and she had no clue who I was. There was zero recognition. I have seen this woman many, many times. My rheum has recognized me “on the street”. This really frustrates me. I want to trust this doctor and what she has to say, but how can I? Her inability to recognize me makes feel worthless and invisible. It makes me realize that in the medical system, I am just a patient, a number. My personhood is in question. Because I am sick.

I’m sick of being the person that gets treated like crap, but takes it with a nod and a smile. That acts like it doesn’t bother me. Because it does. And now I want to rip everyone’s heads off at any chance I get. But I don’t. And I won’t.

I’m trying to get things under control. In the near future, I’ll be starting physical therapy for my colon. Not sure what this will entail, but needing it to work so that I can avoid surgery. My doc thinks that this is not related to my rheumatologic issues. How can it not be? I’m still searching for more concrete answers, and hoping they come my way very soon.

And I’m doing what I can to support those around me who are dealing with difficult things.

So that’s where I stand. And that’s the key thing. Despite being totally overwhelmed by things, I am still standing. I may be a bit worse for the wear, but I’m doing the best I can.


  1. Shit. I don't know how else to respond, but know I'm thinking of you and wish I could give you a hug.

  2. Ms. Leslie, I'm inexpressibly sorry for the frustration and pain you are suffering right now. I will be thinking of you. I wish for you a good day, and an even better tomorrow. All the best. ~Headstrong

  3. I know the feeling of wanting to just go back to bed, bring the covers up over my head and stay there until the storm (weather, emotion, health, insurance, family) of issues flies by, hopefully not taking me and the house to Kansas or beyond.
    The health care system, and the health insurance system are not set up to provide either proper health care nor and "insurance" that you do indeed receive proper care. I seem to spend more time battling the system (especially the health insurance system) than getting treated by it.
    That you are still standing is a proof of your inner strength and power! I hope you can come to a compromise between ripping folks heads off and just smiling and nodding! You do have the right NOT to remain silent, and I hope you continue to exercise that right every chance you get.

  4. I'm so sorry this is going on for you right now. I have been in somewhat of the same situation and it breaks my heart when others are down too. I hope things start looking up soon.

    If you want to exchange numbers, private Facebook message me.

  5. Leslie, that sounds exhausting.

    I'm with you; I don't understand how someone can say that a systemic disease isn't to blame when something goes haywire with the system. OF COURSE it's to blame.

    As for the hospital bill, I think there's "admitted" status and "observation" status. If you were there under observation, then insurance doesn't cover nearly as much. It's wrong for them to play games like that.

    Sorry the year started out so lousy, and I hope things improve dramatically for you really soon.

  6. Dear Leslie, I am so sorry that you have had such a bad xmas & start to the new year. I only found your blog a few weeks ago & already it's helped me so much to know that I am not the only one suffering all this. I had a flare of my lupus symptoms over christmas & slept for most of the time I had off work. I too have been experiencing gut probs, & I know if I go to my doc they will just say it is IBS & not related to the Lupus. Yet I have read so much stuff on the internet which puts the two together. Try to remember there will always be good times after the bad times, even though right now they seem a long way off. And thankyou so much for your posts, it helps us all to know we are not alone with the lupus wolf. Best Wishes from the UK.

  7. Hi Leslie, sorry to read about all that lousy stuff going on. Some of it I have been through myself. I have a couple of autoimmune "issues" incl. colitis and if you want to share GI aspects, you are welcome to contact me. I had digestive problems for ages but no one was willing to listen as I had normal lab results and IBS is such a neat little term to fob you off. When the coloscopy I insisted on confirmed colitis everybody was "surprised". Haha.
    Hope things will pick up soon. Look after youryself.

  8. *hugs* I hear you so much... I opt for burrowing under the covers as well. I hope things improve for both of us!

  9. Thank you all for your kind and encouraging comments. They have really helped me. I get emotional just seeing this outpouring of support. I can't say too much more right now other than to thank you all.

    WarmSocks - I was told by the billing people that my stay was coded as observation. But I was told by my doctors that I was admitted, and was never told that I was only being observed. To be honest, if I had known that was the case, I may not have stayed in the hospital for three days.

  10. So, I'm a physical therapist, and I'm not sure what PT for your gut will entail either. haha. favorite part was you're not sure whether the GI docs know their head from their butt. haha. Given being sent to PT for your gut, I'm not sure they do either.

    It's ok to vent. That's what bloggin friends are there for. I have an autoimmune disease and a blog too: I'd love to connect.

    Stay strong, there's always a downturn before an upturn!

  11. I'm so sorry you're having to deal with all these things.I know what you're saying when specialists tell you your symptoms aren't related to your autoimmunity. I've had a GI and a urologist say that, and they were both wrong!