Jerome and Perry, the tale of a Port-a-cath and a J-tube.

It has been two weeks since Perry got put in and Jerome changed out. I'm just starting to get my energy back and finding my groove with two new men in my life. By men, I mean tubes with boys names. The first week was a write off in terms of me being physically able to do anything. It's not like getting Perry put in was some big surgery or anything, but because of the way my body works it knocked me out. When I was talking with the surgeon beforehand, I made sure he knew that I wanted Perry put up high on my chest. The reason for it is because I didn't want the tube going into my jugular vein to be pulled, and finding comfortable clothes would be easier. When they were doing the procedure, I reminded the team of it again. Sedatives don't really do much for me. So as it stands, Perry is on my boob and the tube going into my jugular vein is always pulled and tight. Wearing push-up bras, v-neck or scooped neck shirts kind of help things. It doesn't help that I use my pectoral muscles for everything that my shoulders should be doing. Having Perry placed where he is, has been taking a lot of getting used to. I'm getting a lot better at not hitting my boob and I had to learn to hug again. The first time I hugged someone with Perry accessed, it hurt like a mofo. The incisions are healing well and the bruising is almost gone. I love the fact that it only takes 1 attempt to get him accessed and it doesn't really hurt. It's so much better than multiple attempts at digging around and blowing out veins. I'm getting 2L of fluids over 3hrs everyday. I refused a pump and have the freedom to be hooked up in my room, the living room and the front porch. The funny thing is I'm taking better care of myself at home than I was getting in the hospital. I'm so thankful that I can do things my way.


Jerome, he's healing well with some funky scaring and I've had no problems with him. Except that I still really hate the type of tube that he his. I cut those white pointy bits off the tube and have found that my skin prefers to hold Jerome in place with Tegaderm rather than paper-tape, and the red plastic attachment is sharp and scratchy. I just really dislike the fact that it's uncomfortable and I can't un-hook this tube and forget about it like I could with the mic-key button. There are bonuses with this tube, one is that I don't need the expensive extension tube for the mic-key button, which does not come with a cap or lid, so I had been putting it in a Ziplock bag. Secondly, I can lay on my stomach comfortably which I couldn't do with the mic-key. However, now that I have Perry I can't really lay on my stomach. Bleh.

Overall, I'm feeling okay if I have my fluids and pretty much everyone who sees me says I'm looking better. I still have dysautonomia spikes but they're less frequent and not as intense. GI wise, if I'm not really using my Jerome or eating I'm okay. I still have the awesome puking abilities. Lentils and quinoa that I had eaten 12 hours prior didn't want to stay down, I even get lentils stuck in my nose as part of the side show. Aren't you glad I told you? I'm refluxing pretty much everything except that plain chips, rice noodles, mangoes and coconut juice are relatively okay. I still eat other things because I need the nutrients, I love food and if I'm going to barf, it's going to be worth it.

I'm still working out a routine and efficient way to work in Perry and everything that comes along with it. After a week of fighting with home-care I finally have a care-plan that works for me. The one they gave me had to be refused and worked out a couple of times. It was well worth it. Living with EDS means a lot of loss and a lot of compromise. One thing I will not compromise is my quality of life.

I still get headaches and migraines everyday but with the fluids, being in low light or darkness, quiet and laying down are helping. I've got the brightness on my laptop turned all the way down which helps a bit, but after a while it gets too bright,things get blurry and I see double. I can get about 3-4 hrs of being upright and out & about before I'm toast.

Meds have been pretty straight forward. I'm barfing a little less with Oxycodone and it's helping with pain reduction by about 50%. I chickened out again on doing a Propranolol trial, the weekend prior was just to nice outside to be wasted on experiencing side-effects, and this past weekend I was feeling gross so I didn't want to punish myself anymore. Since I'm using Perry everyday it means I need to have it flushed with Heparin everyday. We decreased the dosage a bit because I'm a bit of a bleeder to start with and also because of the frequency that I'm using it. That's all going well, I've noticed that little cuts bleed more, and my mouth gets cut and blisters a little more easily than before but nothing crazy.

I've got some pretty insane cabin fever at times, but manage to get Jack-Jack out for an hour's walk everyday. I can finally didgeridoo again which makes me so happy, I was going a little crazy for a while. Otherwise things are getting better as I'm adjusting and wrapping my head around having two tubes. I'm starting to trust more, letting friends help and not worrying about being uppity and energetic when I'm drained. The things I'm having the hardest time with is not being able to work or being active. Those two things were my life, which means I still have a lot of work to do and need to keep trying to find new outlets and passions. When I'm laying around at home during the day I feel lazy, like I should be working and that I need to always be doing something productive. When I start my day with pain-killers or anytime I take them, I feel like someone who needs to be on Intervention. I dislike how I feel when I'm taking them, and wish so much that I didn't need them. Then I realize after not taking the meds that I am always in pain, I am chronically sick and I can't work right now. I guess I'm paranoid that people see me as someone who's taking advantage of the system and getting a free ride. It's not like having one of those "sick days" where some people skip out on work for the day. I would love to be able to work again.

Since most of our bendy posse sees a lot of the same doctors, we often are in the neighbourhood at the same time so we like to try and meet for a bite to eat. Toronto has some excellent food options for any GI or TMJ friendly diet.
Last week a bunch of us met for brunch (which we found out isn't the best idea for some of us) and later on in the week we met for Thai, and had lunch with the most delightful, almost 11yr old zebra. Right now everyone in our bendy posse seems to be holding their own, which is so nice after the insane summer we all had. A bunch of us have big surgeries coming up and I think we're all enjoying the stability and taking it easy. And just for fun, I'm going to leave you with quotes from our bendy sista' Tiffany who had her tonsils finally taken out after 3yrs of doctor fighting. I love that girl.

"I'm a bit cheeky, so I'm wearing a Dr. Pepper shirt that reads, 'Trust me, I'm a doctor' to my surgery ;-P"

"I am working on my relationship with my couch. It's important to spend quality time together."

"Rosanne is getting her own reality show. You know who would make an awesome reality show? Celine Dion. You know you would watch. You'd be ashamed and wouldn't tell anyone, but you'd watch for sure"

"I like my murse... He's taking good care of me." (In reference to her husband)

When you can't tell if it's a side-effect, or a dysautonomia crash and it scares the shit out of you.

As you can tell, it's been a blast and I've had the time of my life.

With the Zofran I only ended up with all the side effects, and no relief.
It messed up my skin and turned me into a bleeder, everything seemed so fragile.
Jerome 2.0 had finally healed and the burn on my butt was coming along. I started the Zofran, and my skin was not happy. I ended up with friction rashes from my clothes, heat rash, peeling skin on my hands, scrapes in my mouth and on my tongue from food that was "sharp", and Jerome opened up again. My skin also didn't want to tolerate IV's for more than a day at a time. There was other stuff going as well, but I don't want to get into it. Now, my skin is healing from all of it. When I was at Chateau Sinai in January, on the 2nd day my skin from the entire bottom of both feet peeled off in the shower, gross I know. It seems as though my skin hates GI meds.

Anyway, my quality of life sucked, and with symptoms being gross in a normal person; with ESD everything is so much worse on top of what we already have to deal with. For example the rate of healing is 6x's slower, and the rate of infection is 6x's higher. No to mention an incredibly low success rate with pharmaceuticals, and just about everything else. So on day 4, I decided to scrap the Zophran plan. We do have a couple other drugs that can be tried, but their side effects are more brutal. I've already tried the top 3 without success, and pretty much everything in between. This is the girl who's been taking stuff for reflux since age 11, slowly knocking them off of the list because they stop working.

For now I'm still feeling the same, and trying not to get discouraged...but am getting a little bit of respite here and there. The rest of my body is okay, my joints aren't happy but it's hurting Jerome to put them all back and I really want it to heal. I guess you should also know that my body is tolerating alcohol much better than food and fluids. I have NO idea why. I said "eff it" and went to a bendy party where vodka was my friend. I figured since I wasn't feeling any better, I might as well make it worth it so J had a few drinks. To think of it, I've never refluxed on it. Hmmmmm.

Then I tried the Scopolamine patch . It was a complete disaster, I only had the side-effects and no relief. Surprise!!!! It ended up being really scary because I thought I was having a bad dysautonomia crash, and was very close to calling an ambulance. I've never had to do that, and have never felt that shitty before.

Drowsiness, confusion and disorientation hit me pretty hard. I felt like I was in a constant state of coming out of sleep paralysis and really had to fight to stay conscious and oriented. I have sleep paralysis all the time, but I couldn't come out of it no matter what I did. I was also really shaky and weak.

Dry mouth was horrible, no matter what I drank, how much fluids I put through J, or how many tic-tacs, lollipops I consumed, I had insane pasties. It also made my secretions really thick and I was constantly choking on it. It wasn't just dry mouth, it went all the way down my throat and esophagus. I thought I had food stuck in there and nothing made it go away.

Blurred vision and dilated pupils were interesting. I woke up, and couldn't see in front of me. Everything was so blurry, I was seeing double and my depth perception sucked. I was really light sensitive and had a hard time looking at anything. The dark was my best friend. I had the brilliant idea to decorate my new neck brace with Sharpie markers, it looks horrible hahaha.

I was retaining fluids like it was nobody's business. I think I finally had to pee after 2L of fluids concoction...yeah a bladder isn't suppose to hold that much but I'm stretchable...

The spins and blood-pressure drops were insane. I had a really hard time going from laying to sitting, or sitting to standing. As soon as I did any of that my BP would drop, I'd black-out, sometimes fall, and was really dizzy. Then the tachycardia would start and I'd get really bad pain in my brain as my body was trying to get the blood back. Then I ended up with a killer migraine. I crawled everywhere I went, because getting up was so difficult.

All of those were side effects, but they present exactly like a dysautonomia crash and some of them like a neuro issue. Since EDSers are prone to blood-vessel rupture and all kinds of crazy neuro things, I didn't know what to think and was scared shit-less. When you've seen your bendy/dysautonomia friends go into complete autonomic failure ending up on life-support, or dying from ruptures, it doesn't take much to shake you up. I had 3 days of that fun stuff, and I never want to do it again. It's a good thing I woke up today feeling better, otherwise I would have gone to the ER.

As for the GI stuff, it's still all the same. Constant reflux, upset stomach and if I'm lucky I can get food to stay down. So it's looking like it's back to the drawing board, however I think taking a break from the pharmaceuticals would be a good idea right now. We've pretty much tried everything, and I'm tired of feeling extra-gross, it doesn't do anything for my quality of life. How strange is it that I actually get excited for surgery, that fundo can't come soon enough! First we have to find someone to do it, haha.

"Jerome just probably needs some more vodka."
(Bendy friend Tiffany)