It’s been a long time since I wrote. I find it hard to explain what’s been going on. It’s confusing weird and totally unnecessarily complicated. So since I don’t know how to explain things I just don’t say anything. I don’t write as much I don’t text as much or post as much.

Sooo here I am trying my best to explain things.

Last year my main doctor over my care was unexpectedly moved.

Since then I have not really found a doctor to take over. So it’s been hard. That doctor advocated for me. Explain things stood up and got the things I needed done.

Now he did above and beyond what he was supposed to do. And I do not expect in the slightest for another doctor to do that.

In January my psoriasis started getting worse and ended up caausing some issues around my Hickman central line (basically long term iv) and getting it replaced was what we knew I’d need in the long run but the doctors didn’t want to mess with me. Not having the doctor to tell the other doctors how important this was. Made it hard.

And as the line got worse and worse. The Place I had gone it get my care for my line for years got overwhelmed and confused by all that was happening because I hadn’t found someone to be able to make the doctors talk to each other on what to do! Which isn’t truly the fault of anyone there just how the medical community works sadly.

In April after waiting months I had surgery to replace my Hickman during surgery they couldn’t seem to be able to put the line in easily at all. Due to having vascular EDS my veins are slow collapsing into them self and/or splitting into smaller veins that basically lead no where. And because of this things like central lines have issues getting through.

The surgery put a Hickman( the longer team iv thing) in but couldn’t get it where t was suppose to be not deep enough in the vein. And it was extremely painful.

After a few months till they could get me into a different surgeon once I got in they decided to do another surgery and remove the old line and place another.

Well that surgery was suppose to be 30-45 minutes and it ended up taking over 2 hours. I was able to go home after what seemed like a short time in post op recovery.

The Hickman hurt weirdly so when I got out of surgery. But after using it at home it hurt. Badly. My breathing then started feeling like I couldn’t catch my breath. It was then my papa was like we got to go to the hospital. And when I agreed my parents knew something was wrong! Hahah

So at the er they were busy the doctor ordered an X-ray. And the X-ray tech using the portable X-ray took a few X-rays of my chest side and back. She seemed worried and that was worrisome.

But when a man comes in and says the dr ordered a ct made both of us kinda worried. After the CT scan within five minutes of being back in the waiting room someone came to get me.

The doctor would then come in and tell us that my Hickman wasn’t in a vein. It had somehow wasn’t where it was supposed to be. I was admitted.

We all decided to try and put a picc line for the time being. They had a hard time putting it in my veins are very thin and they move around a lot. There isn’t much or any connective tissue holding them in place.

After they put the picc line I went back upstairs at the hospital my picc line stopped working. It turned back in on its self.

I had to get it replaced the next day. And was able to be discharged which was a blessing!

But less then two weeks later my picc line stopped working. My doctor told me to go to the duke ER and so we drove the 3 hours there and then we got to the er at 2ish on a Monday and we left the ER at like noon on Thursday. I was in the ER the whole time. In a room with a curtain and in a busy area…

Horrifyingly this wasn’t my worst time in the ER

But during those 4ish days I had 3 picc line fails two tries in one arm and one in the other meaning they couldn’t get them in. Two Hickman line in my chest that they couldn’t get in. And then the last ditch effort came in…

A Hickman placed in the very top of my leg. It’s a very interesting place to have one. It is weirdly in the way more than I would have thought.

Like simple things.. dogs or children sitting in your lap making sure they don’t pull or mess with the central line on my leg.

Leaning against the counter to get something or to rest and your line is right at that level. Wearing shorts tbhe line with dangle and that makes it hard not get it caught on something.

When I need to give myself medication in to my line I’ll either have to pull my pants up if I’m wearing shorts or lose clothing or down. Unhelpful and weird in some situations.

But it works. It’s what I need to survive. We don’t know what’s gonna happen just yet but we do know that my body won’t stop getting worse but we will become better at handle it.

The psoriasis is dangerous and confusing. And the eczema is itchy and painful. so what’s the plan from here on out?! Confusingly it’s trying a different medication to see how that works.

It’s confusing because they still don’t know what cause it to get so bad. And we don’t know either but I started a new medication which is an injection every other week. We will see how this goes!!.

Having a chronic disease makes you have to learn to accept the reality of the disease. I know my body will get worse as my disease progresses and it’s up to me to handle this with joyfulness and kindness.

I don’t know what’s gonna happen and I feel like this is confusingly complicated and have no clue what we will do next or what is gonna work. But I leave it in the Lords hands

Sooo here we go…

Shayweasel is confusingly complicated

But thankful!