Hospital Photoshoot with JBM: Lonely

Hospital Photoshoot with JBM: The Heparin

Always look on the bright side of life

Always look on the bright side of death.

Every day I try to stay positive and look at the good things that have happened:
- I can walk without a cane now, I don't need a wheelchair anymore
- My CRP levels have steadily gone down without the help of antibiotics or anything
- My hemoglobin levels have stayed the same and not sunk, which is great, I'm still anemic, but not that much at least
- I can eat and drink without any problems
- My legs and hands aren't as swollen as they were
- I have regained the use of my right hand, which is amazing

But.

Still I can't help but be afraid of what they might find in theiir biopsy of my small intestine. Do I have cancer? What if I have cancer? Do I need chemo?
I'm 23 going on 24, can I even be released from hospital for my own  birthday party or do I have to stay here that long.
Will I live to see the day that I turn 30. Will I ever have children and see them grow up. I would love to have children, I want to see them grow up. I don't want to be under 30 with a deadly disease.
Who would even want me? Who would be so sick in the head that they would want to fall in love and marry a woman who's always sick and might die and leave them a single parent?

These questions keep running through my head and I cannot shut them down. I wish I could. I wish I could just have an off switch for thoughts like that, but I don't. I try my best to be happy and positive but I'm so afraid and feel so alone in the evening and just want to fall asleep and wake up healthy and above all NORMAL.

A New Hospital Update

I thought I shoud probably write something about the last few weeks here, since I haven't really talked about anything in a while.
So my doctors still aren't sure whether the stuff the in my lungs is pneumonia or lung embolisms. Seeing as I have trombi (blood clots) in both my legs and two around my liver, it is possible I have something in my lungs as well.
I get treatment for that, heparin shots twice a day.

They've give up on antibiotics for a while, but my CRP is rising again, so at some point they may have to consider beginning some antibiotics again.

I had a BIC catheter in my right arm for a few days, but it caused a massive deep bruise (my entire right arm is purple-black) and it stopped working, so now I have a new CV on my neck. It's much more comfortable.

My whole body is covered in small bruises and small red dots, where blood has come out of a small vein. My left leg and my right arm aren't as swollen anymore as they were, but everything still hurts so much that I can't even describe it.
And I don't think I'm being treated with the right pain medication, But the pain doctor didn't come this week, so I have to wait till tomorrow or the day after or who knows how long till I see him and maybe get some changes to my pain medication.

Especially my right leg is now extremely painful, muscles hurt and feel like they've been in spazms and my ankles are really sensitive to touch.

My potassium levels were very low a few days ago, and before I came here to the Triangle hospital from Aurora, my hemoglobin was just 67 so I got five bags of blood! Five! Now my Hb levels are good enough so I don't need anything extra.

That's about it. I don't know more and neither do the doctors it seems.

Some more lovely visitors

I just have the BEST school mates EVER! They all came to visit me in hospital, and just made my day! I am so lucky to have you guys, honestly!

Still alive - but still in hospital

I'm still here.
But writing is too hard and I'm in constant pain. I can't use my laptop since it's too heavy, so this will be short.

I don't have sepsis. I may or may not have pneumonia. I have blood clots, one in my leg, two around my liver and possibly some lung embolisms.

The reason why I'm still sane here because of my wonderful dad whose the most important person to me, my bestest friend Hanna whose been an an angel, and all my other amazing friends from school and the the blogosphere (I'm sorry Manette, I can't remember your blog's address...)

I've also gotten help from the psych department and they've been great to me.

Still in here and no way out

So I'm still in hospital, my arm is swollen and painful, noth my legs from under my knees aare so swollen and painful that I can barely walk even though I'm using a cane.
They took a blood culture now, they're affraid (and I sm too) that I might have sepsis or bloodpoisoning for those who don't know.

I have a new IV line in the right hand (since I can't use it anyways) and will get a new course of antibiotics.

This fucking sucks.

New Hospital Update

Alright, I think now is the time to really explain all of this.

I went to hospital because the lymphnodes on my neck were so swollen that my entire neck was in pain and swollen, my throat was swollen and incredibly painful, so I couldn't eat, drink or take my meds. Which is why I was admitted.

I was sent to Aurora hospital, which is the place where they have a ward for infectious diseases. They suspected three things; herpes, cytomegalo and EBV (mononucleosis). All tests came back negative. Although the symptoms were those of mono, that came back negative as well. This can mean two things, either the tests really were negative and I had something else or then because of my immunosuppression there were false negatives.

In any case a couse of antivirals, antibiotics and cortison has now gotten rid of my symptoms and I am in that sense healthy again. They might let me leave this week!

However, I have a new problem: my entire right hand and wrist is extremely swollen and painful. I have similar pains in my left leg and hand as well, but those are still functional. I cannot do anything at all with my right hand. And I'm right-handed.
They took an ultrasound to see if there are signs of trombosis (bloof clots), deep bruises or inflammationn, but saw nothing at all to suggest those. So now I'm on nervepainkillers, because they think it might be nerve related, and maybe I will have an ENMG later on (not in the next two weeks). It would show if there are changes or problems in my nerve pathways.

Writing this has been horrible, because I've had to use just one hand and I keep making mistakes with my left hand, so sorry for any typos I've missed. My right hand/arm is entirely immobile now, because it hurts even when I do nothing with it.

I'm also still in queue for the psychiatric department, and I might need to start my anti-depressants and anti-anxiety pills again.

Medication:
Lyrica 75 mg x2
Diapam 10 mg x3 (if needed)
Panadol 1 g x3
Zovirax
Some antibiotic that I can't remember the name of
My regular meds
Medrol 8 mg extra
And last night I got some benzo to help me sleep through the pain, which helped and now the nurses are trying to get it to me on a regular basis.

Snow, ponds and feeling better

Still in the hospital and probably will be here for quite some time to come, but I feel a hell of a lot better. The cortison helped to take away some of the swelling in my neck and throat - my lymph nodes are a bit swollen still but not a lot anymore and they don't hurt that much anymore. My throat still hurts like a bitch, but at least now (finally) I'm getting actual painkillers. I managed to plead long enough for them to agree to give me oxycodone when I really need it. Which is only about twice a day now, since the swelling has gone down.

I'm getting my antibiotics through the IV but everything else I'll be taking as pills, which is awesome. And I'm allowed to eat now that I can (thanks to the painkillers) and I feel so incredibly happy just to be able to drink a bottle of coke without wanting to die. Before it felt like one gulp could tear my throat in two but now it feels completely normal with just a slight sting. Slight sting. Jesus, one day and this much progress! It's fantastic!

And I'm pretty sure I'll be getting to speak to a psychiatric nurse soonish - I did ask the first day I was here, but it didn't go further, but today during the doctors' rounds, they told me that yes they know and I should get to speak to someone at some point. Which is great, 'cause I've really been feeling quite anxious here. I haven't had the time to see my regular psychologist, so this is already long overdue to speak to someone, so I really can't wait to load things off my chest!

Now that I have the catheter on my neck, I don't need to have an IV in my arm or hand or anywhere, so I can actually use my hands normally again! Which again, fantastic! Hopefully I'll only miss a few days of school next week and not the entire week. I don't know yet though, but all my teachers are fine with this so I'm sure I can deal with the courses even if I end up missing the entire week. Hope not though, we have team projects and I feel bad about not being there.

Also I got a text message from my post office that two shoes that I ordered have arrived! I cannot wait. They're awesome!

Yes, this painkiller might be making me a tad hyper, but hey, I'm almost pain free! So I don't care what's making me hyper, I am happy.

Every day I go out for a walk (and sorry to say also a smoke) and today there's snow on the ground as well! It's really pretty. Aurora hospital, though in Helsinki, is a nice place: right on a hill, old buildings scattered around, small unkempt park with a pretty little pond. Went to see the pond today and it was frozen over!

Aurora, Aurora

Yesterday was a horrible horrible day. Just plain awful. I woke up in the morning with the most dreadful pain I've had thus far being here and big surprise (thank you effing painkiller hating Finland) I got nothing to help with the pain. I cried hysterically for two hours until I got a very tiny dose of oxycodone (not even enough to get half of the pain away) after which I was sent to a ear-nose-throat specialist. They found nothing new and sent me back to my ward.
I did get some new medications from them to help with the swelling and the infection, but pain? No nothing. I did manage to get paracetamol, which they love to give around here, thank the Lord above. IT IS THE MOST USELESS PAINKILLER EVER.

So, later, after again crying hysterically, I lost my IV, it started leaking. So they wanted to put a new one, but found no veins, so they decided I'd get a central line catheter. For that, they need to know how quickly my blood coagulates, so new blood samples. Again, no veins to be found. Had a panic attack.

They sent me to the catheter place, place the anaesthesiologist finally got some blood out and managed to answer the coagulation issue - and they gave me such enormous amounts of sedatives and strong painkillers (this white diazepine stuff and phentanyl) that I was in no pain whatsoever for the first time in weeks. I felt so bloody happy! When I was finally done with the catheter - which took about thrice as long as normal, since they put it in the wrong way first and had to correct it - I ate and drank so much I was actually full! I can't remember when I ate that much last! Seeing as I haven't been able to eat or drink for ages.

Now finally I'm getting oxycodone as pills during the day so I can eat and drink. They're not high doses, so I still feel the pain, but it's not nearly as bad as it was. And I'm getting both antivirals and antibiotics through the IV catheter, and the swelling has slightly subsided. So today seems to be a better day than yesterday. Yesterday was horrible.
But I managed to get some photos from outside, Aurora hospital is a relatively nice place, old but pretty on a little hill.