On the mend

So I wrote a post about this a while ago, saved it as a draft and then went to finish it later.  For some reason it wouldn’t let me post it from draft mode. I was doing it on the iPad so that might have been the difference, but I decided to just re-write it so I can add more recent stuff to it.  

I had my surgery on October 24 which means I am now seven weeks post op and feeling fine.  The surgery was very long (ten hours) but that’s nothing new to me.  The initial wake up was much less fun than usual.  I think they tried to avoid the NG tube only to have me start vomiting and so they seemed to have to put it in quickly and last minute because I was still retching from it as I woke up and my throat was very sore as well. I think they might have put the wrong size in. It was also quite apparent that I was used as a pin cushion/practice subject for the arterial line and central line. My left hand looked like it was bitten by a vampire and was numb and my right was very bruised around the art line site.  The right side of my neck was also bruised and it looked like someone tried to choke me and I was full of blood.  Apparently it took them three hours to get me ready for my surgeon.  

This time they did a hysterectomy, got rid of the most recent abscess and a muscle flap to help prevent any new abscesses from occurring.  As far as the hyst went I didn’t really feel any different except for the headache I had for the first three days afterward until they were able to start the hormone replacement.  I don’t miss anything connected with that part of my body at all and nothing has changed.  And that’s all I’m going to say about that without getting too personal (I can talk about my ostomy until the cows come home, but I don’t think you need to hear about what hasn’t changed since the hysterectomy). 

As for the flap, it’s still healing but very well.  The actual flap site is completely healed, but there’s a small spot in the incision that is being tended to by the home care nurse.  I think this is a combination of two things: it’s very hard to move around and do things without aggravating that area (picture a cut on a joint that keeps opening when you bend it) and I’m pretty sure I’m allergic to whatever sutures they used.  I broke out from something and that’s the only thing I can think of that might have caused it.  My leg is also kind of rejecting sutures (literally pushing them to the surface, but not causing any kind of trouble other than that).  

As far as the leg incision, that’s been the worst part.  It runs from my groin to my knee and since they also took a muscle out of there it has needed the most rebuilding of strength.  they also used my dominant leg (my right one) so I have had to get use to using my left leg for things like bracing myself or getting up on a chair to hang christmas decorations.  The other day I took the dogs for a walk and they barked at the mailman.  I went to brace myself in case they took off, but used my right leg.  It gave out and down I went.  It was more embarrassing than anything else and gave me a good idea of how much strength I have to work back up in that leg.  I have started using a stepper to help and will probably do some swimming exercises as well.  The strength will come back in time so all is well in that department.  

My ostomy has been find through all of this. I am sticking with my convatec supplies as they seem to work the best and stick the best as well. I like the added benefit of not needing scissors with the mouldable ones.  All is well there. 

I’m hoping to get back to work mid january and also hoping to get back to outdoor things this winter. I miss downhill skiing the most since I did go skating last year.  The best part will be going back to work and being me again…that me I have been searching for these last two years is back even though I will always have this new experience under my belt. I hope to turn it into a positive thing and be a better nurse as a result of it. 

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Surgery update…meeting with Dr VanEyk

So I can’t really remember the last time I posted about my upcoming surgery. I had been putting it out of my head a lot as I am not looking forward to it. Needless to say, the consents are signed and in a month or two I will be back under the knife.

This time there is an interesting twist. A doctor and co-worker will also be operating on me as I will most likely be getting a hysterectomy.  So yesterday I went to the IWK Health Center, my place of employment, to meet with Dr Nancy VanEyk.  I had my choice of who to see in the gynaecology department, but I figured it would be strange no matter who I saw.  I have worked with Nancy quite a bit on the birth unit and have also scrubbed in with her for c-sections, so I knew she was good at what she did.  She is very smart and very nice as well.  Dr Williams, my colorectal surgeon, also approved her as her husband is a fellow coworker and has been consulted to provide me with a second opinion on several occasions.

I was still nervous about going to my place of employment for this appointment.  I already had such a hard time being a nurse and a patient at the same time, and I didn’t want people I work with treating me like a patient with no knowledge.  I was scared she would think my surgeon and I were overreacting in thinking a hysterectomy would be the best choice for the issues my chron’s is causing my uterus via the fallopian tubes.  I was worried the nurse would know me and treat me poorly as a result, or not know me and treat me poorly as a result.  I guess I have spent too much time at the VG, because I had forgotten that most nurses who work at the IWK are there because they want to be there.  Most nurses who do not like what they are doing do not last long.

The IWK is a combination woman and children’s hospital, the best in the Maritimes, maybe even Atlantic Canada.  It is referred to as a “magnet hospital”.  Since there are no private hospitals in Canada, magnet hospitals are the ones that are considered to be the best in the country to work at; providing employees with a wonderful sense of educational security and the best technology.  I was first introduced to this hospital as a child when I was transferred here for my first two surgeries.  At the time the technology was not really up to snuff compared to the brand new hospital I came from, but the staff were amazing and you could tell that each nurse was there because she wanted to be.  In such a specialized area of nursing, you would not survive if you hated your job.  It was at that time that I knew not only that I wanted to be a nurse, but I wanted to work at this very hospital.  I still get a sense of awe that I am here, getting paid to do such an amazing job, and yesterday as I made my way to the clinic I took the same route I would often take to get to work in the morning.  I missed it dearly.

The nurse who came in to assess me walked in and said, “I thought it was you! I saw the name and wondered if it was our Beth”.  It was so nice to be recognized, not for being a frequent patient, but for my identity outside of this sickness that it put me at ease right away.  Nancy arrived a while later and spoke to me as if we were downstairs discussing a patient.  She was in agreement with the plan and was able to answer any questions I had without making me feel like I was no longer a part of her team.  It was nice to be treated this way as a result of being a known coworker instead of being seen as a patient who happens to be a nurse.

She also wanted to make sure I was really ok with the plan at hand.  This, of course, will mean I will not be able to have biological children.  However, even before I became sick I wasn’t sure if this should have been in the cards for me.  I was worried about fourth degree tears, blockages, emergency c-sections leading to more problems down the road.  Now, after everything I have gone through and many discussions with Dr Williams and Jessie, it has pretty much been decided that there will be no babies coming from this body.  And that was before the most recent issues.  I had wondered if I would feel differently if I was in a heterosexual relationship, but on reflection I am thinking not.  There are so many children out there who need parents that I think it would be selfish to put myself in a potentially dangerous situation just to say the child has my eyes.  Plus, I wouldn’t want bring a child into a world where I am always sick.  I want to be able to have enough energy to have fun with my children, and right now that would not be in the cards.

So I signed a consent that will allow her to do whatever she thinks will be best for my recovery and return to work.  I have one more doctor to see and will hopefully be entering the OR in late October/early November.  I am hoping this will be fast and successful and that my post-op recovery will be as well.

My previous self, two AM and just help bring this baby into the world.

My previous self, two AM and just helped bring this baby into the world.

A baby I delivered when the doctor didn't get there in time.

A baby I delivered when the doctor didn’t get there in time.

A whole summer waiting for surgery. Might as well enjoy it!

A whole summer waiting for surgery. Might as well enjoy it!

Swimming with Reese

Swimming with Reese

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Update on the convatec mouldable…a few days later

So a few days into my trial with the new product I had a leak and thought “great…”

However, upon removing the wafer I found the leak was actually caused by my not clicking the bag on all the way after adjusting the position of the bag. Under the wafer it was clean as can be, and my issue with skin breakdown was completely gone. And I don’t have to cut the wafer anymore! Anytime I can cut sown on steps to changing the equipment is a good day for me!

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Convatec mouldable

I finally solved the leaking problems I was having, only to end up with a new issue. My stoma was revised during my last surgery so it’s closer to my skin than it was before. As a result the output tends to sneak under the wafer if I don’t make sure it is very close to the edge of the stoma. I was also wearing a bigger size ring than I really needed so my jeans were riding the edge and really hurting my skin under the wafer. All this led to some very nasty skin breakdown around the bottom of my stoma that would bleed when touched. It would heal with powder, but would always come back.

So I changed to the convatec mouldable system. Instead of cutting the wafer to fit, you just roll it to the size and it forms a nice seal around the stoma, like a little turtleneck for Ferdinand. I don’t like the bags as much because they don’t have the nice mesh cover, but I can get use to that in exchange for being able to do more without the itching pain and the problem with the other ring. My stealth belt is now cut a bit too big as well, but it will still fit ok so that is good. The picture I am posting is my stoma before it was revised, but I couldn’t get a good picture when I changed my wafer yesterday because it was misbehaving so I couldn’t get a clean picture.

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Where am I?

I feel like I have lost myself. I guess one way to put it is that I don’t know who I am anymore, but that’s not really the case. I know exactly who I am right now and I don’t like the “me” I am faced with. Where has the other “me” gone?

The me sitting here right now is anticipating another surgery. If I get in before October 24 it will be my sixth in two years. I have been cut open more than I have celebrated thirty-something birthdays. Sometimes this me catches herself informing people that her job is long term illness, or that she use to work in labour delivery and might do this again someday. I feel like I have left the other me behind somewhere, perhaps at work, and that me will resurface again someday.

But the truth is that exact me is gone forever. I will never again be exactly the person I was before all this mess took place. My approach to nursing will be the same. I hope I will be a better nurse as a result of the experiences I have had on the patient side of the bed. I will do my best to advocate for my patients and encourage them to speak up for themselves. But I will no longer have the same sense of my own life that I had before I got sick. I would tell people that yes once I was sick when I was a kid, but I’m not sick now. Or that I have no lasting problems from when I was sick. I lived in this false sense of security that I was once sick but I’m not anymore, and in fact I am stronger than most people because I was once sick and am not anymore. How lucky I am that I don’t have a more serious illness that will plague me for the rest of my life.

That invincibility is gone. In its absence is a woman who will now have to prove to the world and to herself that she still has what it takes to be a nurse in one of the busiest departments in our Provence. Almost four hundred deliveries a month. My biggest worry will be that people will think I can’t do it, that I’m too weak, have been gone too long and should think about working somewhere else. I am already worried about that, but this will also be the fuel that will get me back to work and I will prove I can still be a birth unit nurse.

As far as the surgery goes it does not worry me, which I sometimes wonder if that should scare me more. I just want to get it done so I can go back to work and be this new me completely. I have complete faith in my surgeon. She has spent so much time inside my body she could probably draw a picture of my remaining organs, and she is taking all the steps possible to make sure this will be the last time. Hopefully the last time ever.

I don’t really know who I am going to become as a result of this, but I do know that the new version of myself will appreciate many things she didn’t think twice about before this. I have been swimming three times this summer, and every time I think how much I missed being able to just float in the water while I was sick. I look forward to traveling with Jessie and teaching her how to ski. To bringing children into the world. And hopefully I will look back on this and remember to be more patient in life.

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Spring…

I haven’t written here in a long time.  At first it was because I was very excited to get started on my road to recovery, then it was because I was super busy working toward associated goals that would lead me back to work. More specifically, I was going to physiotherapy three days a week to begin strength training so I wouldn’t be too much of a lush.  I gained strength and energy very quickly, but started to lose it equally fast.  I was also busy volunteering with girl guides.  I had a spark and brownie group and was also helping with extra stuff within the guiding movement.  For a good month everything was going great and I was ready to greet the excitement that came with what would be the end of my year and a half illness.  

Things wend downhill fast.  I started to get really tired at the gym and couldn’t understand why.  I thought maybe I was just really out of the exercising curve since I hadn’t really done much when I was ill.  I couldn’t figure out why people would say that you feel better the more you go to the gym, because I was feeling much worse.  I had strange pains that I figured were just muscles learning how to work again, or for the first time in some cases.  The chills were just allergies.  I had been in the house all through spring last year so maybe my body was just naturally more sensitive to those spring things that I usually got through with a slightly stuffy nose.  

So one Tuesday in April I dragged my sorry self out of bed, believing I just had a bladder infection and tried to force myself to go to my first day back to work in a year and a half.  I was just nervous, I told myself, nervous about starting my first day.  I wasn’t use to getting up at quarter to five in the morning anymore and once I ate I would feel better. Once I took a shower I would feel better. Once I put on those scrubs and became my former nurse self I would feel much better.  

The 39 degree fever didn’t agree with me.  I had never experienced a bladder infection before, but figured maybe they were this bad at first.  My denial pushed both common sense and a four year nursing degree out the window.  That night I finally went to the hospital, convinced this was a simple problem of being placed on the wrong antibiotics and perhaps a culture would show the sensitivities to be wrong.  

I left three days later with a diagnosis of a new abscess and a tube inserted to drain it.  My spirits got lost somewhere between the painful IV starts and my eighth cat scan (am I starting to glow yet?).  The process repeated two weeks later when the tube blocked and had to be removed and replaced.  

I think that was the most annoying trip to the hospital I have ever had, the replacement visit.  My surgeon wanted me to be seen by gynaecology because she was worried the IUD I had was causing the infection.  I had a tubal abscess as well and she wanted to make sure we were doing the right thing to treat it.  She called Infectious Disease to make sure I was on the right antibiotics.  She also wanted the IUD removed since I had a fistula to my uterus that she found during my last operation and she didn’t want any infection hanging around.  I was suppose to explain all this, because she had a surgery to go to, but they were to page her if there was any confusion and she would explain it herself through one of her residents.  

Something interesting about the nurse-patient ratio.  I’m not talking about the one you usually hear about: the number of nurses present to care for a patient.  This is the amount of time that will pass when a nurse is sick before she seems to suddenly know nothing.  Nothing about her body and certainly nothing about healthcare.  In any situation I have found it is much easier to advocate for my patients than myself.  At least when I am at work I am on an even playing field with the doctors.  I have proven myself to them. They know I have the goods to back up a theory.  This takes time, and is something that must be started anew each year when they fresh second year residents arrive ready to save the world, one mother and baby at a time.  

When you become a patient this slowly fades away.  There are days when I can’t even come up with a proper argument to try and present my own case.  Days later, I will think one up, and wish I could just be transported back to that day when I was sitting in a hospital bed feeling like a fool.  Enter the new obs resident, so new she hasn’t even worked with me before.  I was not a nurse to her, not even a was-nurse.  And she wasn’t really sure why she was there.   

The day went by and after one huge bout of frustration on my part she went to call her staff doc.  Before she did this, she tried to inform me that she could understand my frustrations.  I wanted to laugh in her face.  She had no idea what my frustrations were.  I was sitting in a bed, in a hospital yet again.  No one could tell me why this happened and everyone had different theories.  No one could tell me how I could prevent this in the future or if it was going to go away anytime soon.  I should be back to work and I’m not. And I have a growing list of phrases that shouldn’t be said to a chronically ill person, although I do understand that people often don’t know what to say when faced with a person informing them they are sick yet again:

1. I understand your frustrations (see above)

2. At least it’s not cancer! (I don’t know where to start with this. At least with cancer there is an end game, and just because it’s not cancer doesn’t mean it’s not crappy)

3. Gee you have really bad luck! (No I have a sick body. If luck had anything to do with it this would have happened in the seven years after I broke that mirror ten years ago)

4. Back again? (Yes…)

5. But you look really good! (I understand this is an attempt to make me feel better, but at the moment I would rather be twenty pounds heavier and have my life back)

6. But it’s just infection right? (No, it’s just an abscess that this drain might not clear. Then what?)

7. So when are you coming back to work now? (I don’t know)

8. So what if the drain doesn’t work? (I don’t know)

9. Yes I heard you’ve been in the hospital off and on. (Understatement of the year)

10. Aren’t you lucky you get to sit home and rest! (Yes I just love watching Netflix.  I’m currently on my third round of Glee)

 

Please note I won’t take it personally if any of this is said to me.  Mostly I’m just in a bad mood and take these phrases as a personal insult, when really I know it’s just that people don’t know what to say.  But I had to get my frustrations out somewhere and this is my blog, so what better place? 

Peace Out…

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My first baby blanket

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Don’t panic! This is just a practice blanket with scraps I had around the house. I want to practice a bit more before I make one with real baby friendly fabric. I was fairly happy with this one, but I just have to work on the corners and practice going around the edge where the colours meet.

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