Where oh where have you been?!?… what happened in my week (and a bit) of silence.

So we went from blog posts EVERY day to falling off the face of the earth, well a few reasons, getting home from the Brompton, I was exhausted… so a nice chilled Friday prepping for Tattoo Saturday….

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I have slowly (not through choice) been working on my sleeve.  So I have sat 4 times, with the first being 3 hours and was the main outline of the Phoenix and the lower (purple and pink) flower.  No colour none of the background in fact this was the day of her birth….

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Then I went back, did 2/3 hours again to start the coloring of the now Purple/Pink flower was done, now this was a cover up and so was worked a lot, but we need to go over some areas as you always do. It was a focus to get the first round in, we did a little shading of some of the wind bars that run through the phoenix tail.

The next session was a 6 hour one and although we spent a lot of time laughing… well Tammy (who is awesome by the way) and I are often told off for laughing too much, tattoos aren’t meant to tickle – they don’t by the way, they hurt, but we have a similar sense of humor. In this session we got a lot of the background outlining done.. now I don’t have very good pictures of this session, but we put in all the wind bar markings, the additional flowers, the branch, shaded all the upper arm wind bars and clouds. All of the background bits where placed in pieces. We didn’t want it to pull away from the main feature so spent time building it up bit by bit. So it was 6 hours of inking, drawing, laughing but it took a lot of shape that session.

d2ebe51b497fb12f4a2d2708839cb6d4--best-dressed-tattoo-quotesThen there was the latest one, 5 hours (we stopped at 4.5 as my arm had swollen).  We started with the dreaded elbow, OH MY GOSH, so it’s a wind bar and shading, not that bad right, thought it will be alright, it wasn’t “you need to stop that pain” but it was hardly pleasant, I am glad I didn’t have any solid solid shading I think I would have tapped out.  Next up to get out the way was a couple of additional wind bars on the lower arm near the wrist, then slowly working up coloring in flowers, The lower bars and little blossoms again where part of a cover-up so took a little extra work. We got the blue/pink flower done, some more blossoms here and there.  As I said about 3 hours in my arm had started to swell. Now I am ALWAYS honest with Tammy about meds, we’ve looked into it and the effect, I had all the other sessions all fine, but Saturday my arm doubled in size.  at 4.5 hours I was more than uncomfortable with the pain, in fact I think I said the work “ouch” at one point so we agreed to stop and roll the time over. That’s what I like, we don’t take breaks as such, we did stop for 15 mins in the middle for a quick lunch as I was getting hangry.. but also if I need to stop or its becoming unworkable we will. I mean this girl did my rib cage in 2 hours as we just cracked on and no breaks, where as we had 3 hours booked in to get it done.  I have a great pain threshold so I can take a lot thankfully, just not this one.

Saturday was pretty much a write off after that so I had a virtual NetFlix and chill with a buddy who is one of the Chronics (more to come on these later). So basically you watch the same movie, ignore it and spend the time texting/talking and laughing at each other whilst chilling.  We like this time as its a distraction from all the shit going on in out Chronic lives, but that person gets it, you don’t want to talk about hospitals, treatments or how you are, you want to laugh at bad movies. I can’t even remember what we watched… I am sure it was awesome.

714f1c4c6a4fdb56664f057fbce1d83eSunday was the day I started my new diet, I have put on a bit of weight with the drugs and lack of movement I have had recently, so Sunday I got my friend to weigh me, measure me and got everything sorted.. we are less than a week in and I am already down so whooop, I will do a whole dieting when ill post soon so will spare all the details here. It’s good to be back and getting back to me. I cannot wait until I am back to who I was a year ago.

Monday was back to work – well I work from home – but I had just had a week of with the hospital tests so catching up all day, making sure my diary is sorted, then it’s been pretty much the same until Wednesday night.

Enter the drama-llama, queue the dramatic music…….

I realized I was running low on a couple of meds.  So I have to go through the battle with the GP’s receptionist to try and get in to see the Doctor.  Which I managed finally …. please tell me again why they are so protective and need your inside leg measurement before they will let you set foot in the door? Any hooo, the weather outside was muggy and icky, I was stressed with the receptionist who gave me minutes to get to my appointment, at which point I had an attack, they took 25 mins to find a nebuliser and wouldn’t let me go home.

So in the ambulance I go, after the usual adrenaline and hydro-cortisone shots, we are only blues to RESUS……. UGH!

IMG_9141Once in there we are on the back-to-back nebulisers, they pop in an IV line and wack some magnesium and fluids up. Within minutes ITU are “popping” in and I am not best happy to see them.  I have some amazing plans this weekend that involves huggles, steak and hiking….. YOU ARE NOT TAKING THEM FROM ME oh and a hair cut!!!! I know… me a hair cut.

I have been refusing an ABG, mainly because my arteries are fed up with that crap, they are painful and I am still holding ground pretty good right now. Oh and  I really wasn’t playing ball.  Next thing I look up from texting (see told you perfectly in control) and one of my favorite Doctors walked in, came over, mopped my sweaty forehead, asked whats going on and went off to investigate As he leaves my Asthma Nurse pops in as she heard I was in too with Dr Haseldene my consultant.  Perks of being in RESUS when everyone is on shift.  A chest x-ray happens and the blood tests come back and IMG_9145there we have it I have Pneumonia.  Sounds dramatic doesn’t it. Not really its a regular thing, for an asthmatic its a monthly occurrence.  So antibiotics go up, along with more fluids. potassium and some hydro-cortisone. ITU are now all talking and whispering with everyone else and I reluctantly give up and allow the Doctor I trust to run the ABG and my gases aren’t that good.

I have a real issue with lactate and of course everything else was mucking about…. meant one thing….

IMG_9148Off to ITU with stats rapidly dropping, the trolley comes out with the anesthetic… also an art-line kit.  I had this smug Doc there now, telling me how he will get it first hit, I point blank refuse it. This discussion goes on a while and I won. They are painful to get in, they are uncomfortable also I know I have this attack and I will win.

After more drugs, more nebs, I am tired, and on goes the bPAP, high-level oxygen and its too much, these machines can be a Godsend some days, but when you reject it you do.  I couldn’t tolerate it, it was making it all worse, which is never good so I go back onto a normal oxygen mask and they ask me again will i be ventilated, I refuse and tell them under no circumstance will I be ventilated. Now I know you are sitting there, all shaking your head and saying stop causing a fuss.  I am done with being ventilated and loosing days of my life. When you have done it so much, been in hospital months on end, all I wanted was to patch up and ship out so I can have some sort of a life.

IMG_9149This is where the fun begins… up goes a ketamine infusion. At this point I am angry as hell, I know I can beat this one, as an Asthmatic we all know if this is a battle we can win or we need to admit defeat. It was 7 hours into an attack now, I am tired, ketamine infusions sedate you at the same time and also make it really hard to stand up for yourself…. That was not going into me.

At which point I tell them again I do not want to be ventilated, in fact if they keep ignoring my wishes I would self discharge….. now this isn’t me being ungrateful, its me knowing I got this, but not having the support of the Doctors.  So eventually I agree to stay, after the threat of sectioning me and knowing I wouldn’t be, but I had no energy to fight the MH team.  SO I stay, I sleep on my bPAP machine as promised and with more nebs it is under control.  In the morning however was a different story.

Morning rounds and I was seen fast. they speak almost as if I am not there, so I pipe up as they say you know I can hear you, so I  set them straight about why I refused the art-line, ABG’s and ventilation. At the moment they seem to be quick to ventilate me all the time I never have a chance to fight it any more. ITU agreed to discharge me BUT I needed to see respiratory for sign off as. This is where you have to really be firm, you cant sit all day waiting to see one consultant, they have lots to see, clinic, ward rounds soooo angry me stated how I agreed to stay overnight on the grounds I would be allowed to leave at 11am with out without permission. 20 minutes later up comes my consultant and she pulls up a chair this is all pre 9:00 am… impressive.

We chat, openly as we always have, being chronic and as ill as I am we don’t pussy foot around, I know my condition and how to manage it, Dr Hasledean also knows I have had enough of this, of hospitals, of week long stays for safety sake. So we talk about the fact I have quite a bad case of pneumonia and the risks, how they would prefer me to stay in with IV antibiotics but how they know that IF it gets worse and starts flooding my lungs more I will come back in, but she also agrees I can manage it all at home just the same.

So a quick wash, change out of the sexy hospital gown and BOOM! I am off home and back to work. Some times you really do have to fight the various teams, before anyone says well you are being selfish, I am really not.  If you live with something that takes over your life you need some normal, you need some fight, you need to know for once you do not have to cancel plans.  If I was really bad I would have no choice but to stay in, I am far from stupid.

Now today is Forecast Friday.. so lots of meetings, calls and tonight…. well tonight I get my hair cut for the first time in forever. Why?!? because for the first time in forever I am not in hospital.

  1. Well Princess I just Don’t know what to say but I do understand. But I wonder what you would tell me to do if the boot were on the other foot.

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    1. I would understand as I know now you know your limits. If you where the person I first met on the ward months ago, new to all this I would be mad at you …. now I know you know how to fight for what is best for you xx

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