I’m Still Here

By Lukasz Szmigiel
It’s been a long time, hasn’t it? I never thought that I’d end up needing, or choosing, to step away from this blog for so long. I had come to rely on it so heavily to help me cope with the various aspects of living with a chronic illness, and it’s been so incredible to be able to vent on a platform that gives me access to so many wonderful, supportive and understanding people. I really have missed that, and all of you so very much.

I never intended for my hiatus to be so long, but the longer I stayed away the harder I found it to come back. So many difficult things have happened since I last wrote and I haven’t known where to start. While some of those difficult things have been to do with my illness, most of it involved my personal life. I’m so used to being able to honestly and openly talk about all of the difficult, painful things that my illness results in on this blog. But, when the hardest things that I was facing became within my personal life – where there’s the need to protect and respect the privacy of everyone else involved – I found it hard to work up the desire to post. That was what I wanted and needed to vent about the most, so instead of having to pretend that those things weren’t happening I ended up just preferring to stay silent entirely.

I do apologize and regret not letting everyone know where I’d been for so long and that I was alright – not that I’d expect people to be sitting there consumed by it, of course. But nonetheless, I think I owed it to you to have explained my absence after all of your continued support over the years. To those of you who sent me emails and messages asking if everything was alright, thank you so much. You never picture your absent having any impact or even being noticed, so, receiving these messages was really touching and appreciated.

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It will take me a few posts to explain a bit of what’s happened (medically) in the past 6 months, but I do intend to catch you all up very soon. But, first off, I was asked by the American Recall Center to participate in their November Awareness “Talk About Your Medicines” campaign, by writing a bit about my personal experiences with various medications. I’m really honored that they asked me to be involved and this is a really good thing for me to write about having been tried on so many different things since being diagnosed with my illness. That post will be published tomorrow. I invite any of you who’d like to participate to either leave a comment about your experiences – good or bad – or, if you’d like to guest post: email me at tissue.tales@hotmail.com.

I can hardly believe so much time has passed; the last 6 months seemed to have somehow gone by almost in the blink of an eye. Maybe it’s because so much has been going on. I’m really looking forward to picking up where I left off 6 months ago and I sincerely thank you all for sticking with me during the hiatus. You are, without fail, what makes this blog such a joy to keep.

'Til the Cows Come Home By Kenneth Thewissen

Much love to you all.

– Katie

Some drawings, some ramblings.

Sunflowers for the friends by Claudio.Ar

It’s been almost a week since I started the morphine and I have to admit, it’s not working as well as I’d hoped. That being said it is an improvement from before, and it’s certainly making my nights a lot more bearable. Perhaps it’s a matter of proper dosing. The fact that I’ve been getting some sleep is a miracle in itself. Spending a day with pain is a lot more bearable if you’ve gotten a decent night’s sleep. I’m tolerating the morphine really well in regards to side effects. The ones I am experiencing are the same as with codeine, only slightly stronger. But, no nausea or vomiting which is what I was the most worried about, so yay! I have another doctor appointment Friday morning to discuss how the new medication is going.

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I’ve been doing some more drawing lately, which makes me happy. I had started drawing this eye but my experiment with colored pencils went very wrong and I ended up having to throw it away. Note to self: don’t do a lot of the work before you try out something new. Experiment first so that if you screw up you don’t throw away something you spent a long time working on. That should have been a no-brainer but alas, at least I learned my lesson!

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As for this drawing, it’s finally finished! I really like to have something like this to work on when I’m bored or fidgety. I pretty much always have one on the go. There’s not too much pressure not to screw it up because it was always meant as more of a doodle in the first place. Then I don’t have to avoid it when I’m not feeling good or lacking sleep for fear that I’m going to muck it up. Muck away!

I was in the midst of a Doctor Who marathon when I started this, that may explain the robotic eye appearance. You’ll undoubtedly notice the pen smears everywhere, I’m terrible for dragging my hand through the ink before it’s dry. I’ve looked in the mirror to find pen on my face many times this week and it always makes me chuckle.

Much love everyone, hope you’re having a great week! ♥ 

Change, hand in hand.

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So, I have a doctor appointment set for the 10th to discuss upping my pain medication and how bad the back pain is; both night and day. I’m a bit nervous, I’ve never liked discussing narcotics with doctors. It shouldn’t bother me but the stigma of drug addiction and chronic pain and how often it’s assumed that if you take narcotics you’re a drug addict, have always made me feel more ashamed of not only what medications I need to take for the pain, but the chronic pain itself. That’s one of the reasons I’m being open about this on here, I think it needs to be talked about in order to be better understood.

I think I deserve a certain amount of trust from my doctors by now when it comes to my pain medication and whether or not they can rely on me not to take it for the reasons it’s prescribed. I’ve been on the same low dose of codeine (T3s) for 7 years now and I’ve never once “lost a prescription” or taken them for anything other than pain. And I’m not naive enough to think that addiction could never happen to me, but I am educated and conscious of the facts involved and I take every precaution I can to keep that from happening. And when you’re doomed to a life of chronic pain that’s all you can do really.

They do say that those who really, truly suffer from chronic pain are less likely to abuse there pain medication than others. And, I can understand that; the best explanation I can give for my reasoning being that when you’re in a lot of pain the only think you can even begin to think of wanting from your medication is for the pain to lessen. You aren’t thinking of or craving a “high” because being in less pain is the best possible feeling you can imagine at that particular moment. So you take your medication for the reason your supposed to because that’s all you really want; just some pain relief. 

I’m still really bummed at the prospect of upping my medication at all. But, the pain is getting worse and I’ve still got a long way to go in life with this body. I want to have some quality of life while I can, you know? I need to let this particular part of my worries go and learn to accept and move on from it. I do feel really lucky that I live in a place with access to pain medication in the first place because not everyone does. 

Anyways, babbling aside, what I really wanted to say today was thank you all for your constant kindness and support. All of you mean so much to me! Knowing I can log on here and read so many loving, compassionate, understanding comments is such an incredible comfort. You’re all angels. xx

That’s good to know.

After my wisdom teeth surgery I was advised to start taking my tylenol 3 every 4 hours along with either my muscle relaxers or the anti-inflammatory I was prescribed (rotating them out each time). I’ve mentioned on here before that I generally don’t even take my pain medication everyday unless I absolutely have to – they’re no good for you and my stomach’s got a long time to put up with them yet. But, aside from making the jaw/head/face pain from the surgery bearable, I also noticed for the first time in months that the sometimes excruciating, ever constant pain in my back was almost unnoticeable. It was never gone, but it was low enough that I didn’t think much about it compared to the other body pains. 

Ah, but the assumed catch – as soon as I start weaning back off of the meds and down to my regular doses, the back pain came back with a nasty vengeance. I didn’t even know that it was possible to get it down that low, but it doesn’t really matter because constant pain medication is just not an option long term. So, I kind of wish I didn’t know that. I feel like I finally saw a light at the end of the tunnel but knew that I’d have to turn back and go the other way. How unfair is that. I am thinking about talking to my doc about nerve blocks for the pain. Have any of you tried them? And if so, how did they work and were they worth it?

On a fairly higher note, I can eat again! And the jaw pain (and the general pain of having your wisdom teeth removed) is dissipating. My bruises are almost gone which is good because I was getting a lot of concerned looks at the grocery store. I wanted to walk around with a sign saying that it was from the wisdom teeth. From the glances that I got I think people seemed to be thinking that someone had beat on me a bit! The entire wisdom teeth/jaw healing thing actually went much better than I thought it would. The healing was slower than the norm but I was told to expect much worse. I’m getting a little bit tired of the saltwater rinsing, maybe I need to ease up on it because I’ve been doing it religiously. But I keep hearing disgusting stories about people getting food stuck down the tooth holes and it going rotten. Sick. I don’t want that to happen!

Anyway, I’ve been up forever and I have a bad feeling that I wont be falling asleep any time soon. It’s still a bit early yet but I just have that…feeling, the one that I get when my insomnia is kicking in. I’m going to out of town to stay with my amazing aunty on Wednesday though – a fellow chronic pain sufferer and nocturnal dweller – so I’ll have some good company during my long nights. I’ll tell you more about her later, she’s too much awesome for just a sentence or two.

My posts have been so dreary lately, so, I thought I’d brighten this one up a bit with a picture. I’d have just taken my own colorful picture of the flowers I bought my mom for Mother’s Day, but it’s late and the lighting in here sucks. Maybe I will tomorrow.

Medications

Hey guys.

I’m going to cut a break in my hiatus by talking a bit about some of the medication I’ve been on and the side effects that they caused. For me it’s really hard sometimes when trying a new medication to tell if what I’m feeling is a result of the meds or if it’s just a part of my everyday not feeling good.

First off when your trying a new med I urge you to talk to your pharmacist with any concerns or questions. For a doctor to know every side effect from rare to common of every medication they prescribe would be impossible. Realizing that is important, that way you’re aware that putting blind faith in your doctor to know the exact effects your medication is going to have on you isn’t a good option, plus everyone is different and can respond differently. The pharmacists that I deal with are very friendly and willing to go over anything they know about the medications I’m getting. If you want you can call the pharmacy instead of going in.

Next, and this has been very important in my search for the right medications; listen to your body. If your body’s telling you something’s not right, then it probably isn’t. And even though I have never done so (I really wish that I had now) it’s also really helpful to record a log of any new symptoms you start experiencing with your medication as well as the name and dosage. Seeing changes written down helps keep track and be aware of just how your feeling, when, and what seems to cause it.

I’ve never responded well to medication. They rarely have the intended effect and always have the worst of side effects. I’ve hardly ever been able to stick to a medication whether it be pain killers or anti depressants or anything else.

The last new medication I was placed on for my headaches was causing me extreme side effects a few weeks into taking it. They were subtle at first but quickly became more and more worrisome. What my doctor thought was anxiety was actually the effects of the medication. The only thing that helped me was the internet. I looked up a new frightening symptom and low and behold the name of the new medication popped up along with a list of all of the other symptoms I was experiencing.

Now every time I start a new med the first thing I do is research it. Not to second guess my doctor but to be aware of the things that might go on and to not be frightened by them.

I’ve decided to start writing about the medications I’ve been on (at least the ones I remember) and my experiences with them. I’m doing so for others wishing to research as well as for me to be able to look back and remember the details. I’ll make a specific category for them so that they’re easy to find.