What if I say I will never surrender?

Well, hey there.

Here I am.

It’s been a while so I will play catch up tonight, before writing about the more pressing things I have had on my mind.

A large part of why I have not been writing is that I have been in the throws of fertility treatment (which really deserves its own special place in hell). In between hormones and appointments and stress I haven’t had the emotional capacity to write. Though, lord knows I have tried.

Over the past few months I have learned again and again, that my body is doing it wrong. I am running out of eggs. My immune system is killing pregnancies. I have endometriosis. Ovarian cysts. Polyps. “Doctors appointment” to me, is synonymous with “Doom”.

On the plus side I now know more about human reproduction than I ever anticipated. So ya know, if I ever get a chance to go on Who Wants to be a Millionaire and there happens to be a question on zygote development or hormone production; I may be in with a chance for the big bucks. Don’t worry. I won’t let it change me.

One of the more interesting aspects of my treatment is the intralipids. Basically once a month I go into hospital for the day to have an IV of some soy/egg concoction. I am banned from taking steroids (according to my immunologist) due to the whole rampant psychosis thing. So the intralipid treatment is another way to suppress my immune system to allow a pregnancy to progress. Apparently anyway.

Intralipid infusion. 20 minutes after the nurse 'tissued' me, and my hand blew up like a balloon (which sadly, I don't have a photo of).

Intralipid infusion. 20 minutes after the nurse ’tissued’ me, and my hand blew up like a balloon (which sadly, I don’t have a photo of).

I also had a laparascopy surgery to treat my endometriosis, which wasn’t too bad. I have a history of waking up like a wild combative beast after a general anaesthetic, so my anaesthetist told me she was going to sedate me before I woke up. It must have worked because when I woke up there was no sign of a struggle, and my nurse seemed uncharacteristically relaxed.

One thing that really struck me was how NICE the nurses were. I’m used to nurses barking at me or being profoundly unsympathetic. After my hernia reconstruction (which was a fairly large operation that I spent a total of 7 days on a surgical ward for) I had the audacity to ask a nurse for some painkillers. I was told – in a rather snippy tone – that I HAD to expect SOME pain, and was very reluctant to offer me relief. I was an involuntary psychiatric patient at the time, with my own psychiatric nurse, and I half wonder if she thought I also had some sort of substance abuse problem as well. But even if I did; 24 hours post open surgery you hurt. You need painkillers.

Anyway, this time, during the night after surgery I was in a lot of pain. I left it for about three hours before, out of desperation, I pressed the call button and waited to be told off. Instead this lovely nurse came, and looked at my chart and dosed me with oxycodene in a rather maternal manner. I promptly got high (which was odd as I used to take the stuff 3 times daily and never felt remotely stoned) and then fell asleep. My sheets were changed. I was spoken to in a respectful manner. I was given options not orders. I was not a psychiatric patient, nor was my psychiatric history deemed particularly relevant. I was treated better. It’s hard not to make assumptions.

Of course, things never run smoothly in our household. So a few nights after the surgery Hubster and I woke to Master D coughing in an exceedingly ominous manner in our bedroom. Seconds later he threw up. Fifteen minutes later he hurled again. Master D climbed into bed with Hubster, and in an effort of self preservation I escaped to the couch – because gastro after abdominal surgery? HELL NO. But the damage was done, and we all went down with a despicable, no doubt Kindy acquired, stomach bug.

In the middle of everything I started to feel very negative about everything. I felt like we had too much on our plate. I had too many appointments. Too many health concerns. Every week I seemed to spend most of my time in hospitals or doctors waiting rooms. I felt drained.

So when Hubster announced he was going to Sydney on business I booked tickets, packed bags for Master D and I, took some of my annual leave and went with him. It was the most wonderful week spending quality time with Master D, seeing the sights of Sydney, and getting the hell away from everything that was going on. Only marred by reacting to some food, getting sick, and then having dreadful anxiety problems. Because autoimmune diseases never take holidays.

When we got back I saw my psychiatrist who put my back on Seroquel for the interim. I hadn’t slept properly in weeks, was having constant panic attacks, and was getting more and more unhinged. The med change seemed to help and I began sleeping again and my anxiety has subsided somewhat.

So here I am again. Just about to start another round of fertility treatment. Fighting to keep my autoimmune disease and mental health stable. Juggling a plethora of appointments. Trying to fit in a full time PhD and part time work in the mix.

I’m doing ok.

Each day at a time.

It takes a lot for me to surrender.

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Hospitals, Procedures, and Coming to Terms with Having a Chronic Disease

It has been twelve months since I first started experiencing symptoms of Oesionphilic Gastroenteritis. Having this illness has taught me a lot, but it has also taken away a lot.
Much of the time like to put a positive spin on things. My blog is called “Finding my Sunshine” after all! But today is a day that I need to talk about the negative impact.

I was initially hospitalised because I was physically unwell, wasn’t absorbing my psychiatric medication so I became mentally unwell. In hospital they wanted to treat both issues.

I didn’t spend a week in hospital. I didn’t even spend a month. I spent FIVE months away from my family. Away from my life. That is a long time for anyone. But especially for a nearly four year old who needs his Mummy.

This is a short list of what I have been through in the last 12 months. There are probably things I have forgotten.

– 13 general anaesthetics
– So many CT scans, x rays and ultrasounds that I can’t even count
– an EEG
– a number of highly unpleasant examinations that I am not even going to go in to
– major abdominal surgery which incurred seven days on a surgical ward
– major complications with said surgery which almost sent me back into theatre
– 17 different medications. At the same time.
– A urinary catheter for around 6 weeks which was not only disgusting and humiliating, but led to me getting very ill from constant infections. It became such a problem that they were close to surgically inserting a catheter into my belly that would stay there for months.
– five months as an inpatient being tossed around between four different hospitals
– 10 rounds of ECT
– profound memory loss (there are still things I can’t remember from before, during and after my hospital stay)
– at least two injections administered against my will. There may have been more that I have forgotten.
– at one point I was basically living off medical formula
– surgeries and procedures that were cancelled on me at the last minute, after I had been prepped to move to the surgical ward. After I had been given enemas, drunk litres of bowl prep and undergone various other unpleasant examinations.
– two endoscopies and one colonoscopy
– months of morphine – both IV and oral. Because that’s not addictive at all.
– These days I can never see a doctor without them taking at least six vials of my blood. Today it was 11. I actually have a scar in the crook of my arm due to the enormous number of blood tests I have had. Which is actually kind of useful because I just direct the pathologist to that spot saving everyone time and hassle (I have “bashful veins”, and getting blood can be pretty difficult).
– appointments with immunologists, gastroenterologists, dieticians, psychiatrists, psychologists, general surgeons and various other professionals. I saw multiple doctors from each category.
– Nearing the end of my stay I was told that the nightmares, flashbacks and anxiety I was experiencing was due to PTSD. Trauma from being in hospital. This is not something I really talk about to people as I feel there are far more traumatic things (war, rape, violence), and I felt a bit of a fool to have been diagnosed with PTSD because of a hospital trip. But looking back it was fairly crap I guess.

I realized today that I used to be quite nervous about medical procedures and would go to great lengths to avoid any kind of treatment – be it medication or hospital visits.

Now I have become hardened to it all. I am so used to hospitals and doctors and having instruments stuck in various parts of my body that the procedures themselves do not bother me. Going to hospital appointments, seeing doctors is a pain. But it doesn’t scare me. It doesn’t make me anxious. It doesn’t really have an impact on me other than I would much rather be doing other things.

And I forget that it shouldn’t be like that. That I should be bothered. That kind of attitude actually isn’t normal.

This week I haven’t been well. I have had an autoimmune flare up.

And it all comes flooding back. I realize that I am stuck with this illness, for better or worse. I have an extremely rare, chronic, incurable disease that I have to try and manage every day of my life.

This illness has a big impact on my life, even on the days where I am feeling good. We live in a world where food is a very social thing. Not being able to eat with others, eat the same thing as others, share food with others can be isolating and frustrating. A simple thing like going to a café for lunch involves a lot of planning and consideration. Usually I can find one item on the menu I can eat. Then I need to worry about cross contamination.

But more than the inconvenience, I am so frightened that I will have a severe relapse. For us with eosinophilic gastrointestinal diseases it is not simply a case of avoiding my known allergens and triggers. My disease breaks and bends and morphs and what used to be tolerated well by the body can, without warning, put me back in hospital.

And if my body goes. My mind is sure to follow. If my body doesn’t absorb the psychiatric medication I take, I am at huge risk of bipolar relapse. The only medication that has been shown to be effective in treating my autoimmune disease causes severe psychosis.

I feel trapped. The enormity of my condition is becoming clear. I have seen firsthand how much there is to lose, and how quickly this can happen. I think I’m just realising that this isn’t going to go away. Why can’t it just go away?!

All I can do is keep my body in the best condition through diet and lifestyle, and take action at any early signs of trouble. This week as soon as I had symptoms I changed my diet to the blandest things possible. I started taking probiotics. I had acupuncture.

Today I feel better. I still can’t tolerate food very well, but I’m not in pain anymore. Maybe I dodged a bullet. Maybe in a few days I will be able to join my family at the dinner table. I just had this idealistic view that with a high maintenance healthy diet my illness was in total remission, and I had complete control. I guess this uncertainty is the nature of the autoimmune beast.

This post is different. No clear point. No photo. No attempt at humour. No time spent proofreading. No steller writing here I’m afraid.

Sorry, guys!

The “Day Surgery” that Wasn’t

Just to complicate matters, in the middle of everything I was due to undergo a hernia reconstruction. My surgery was supposed to be conducted in The Dungeon but after several last minute cancellations I was referred to a private surgeon. When I met with him he told me my hernia looked fairly small, and like an easy job. It would be a day surgery and I “may not even need mesh”.

Famous last words.

I woke up from the general anaesthetic thrashing and screaming, like I always do. I was surrounded by staff in scrubs (including my nurse escort) trying to calm me down. My doctor appeared.

“Rachael,” he said, placing a hand on my shoulder, “we are taking you to the ward. We need to keep you in overnight. The surgery was more complicated than expected.”

I nodded then, perhaps it was the pain or perhaps it was the needle in my thigh, but I began to lose consciousness.

I woke up a few hours later on the ward. I tried to take my oxygen mask off, but my nurse escort firmly held it on. “Your stats are low.” she told me. I began to lose consciousness again.

Later on my doctor arrived. “The surgery was more complicated than expected. Your hernia was large and very deep. We had to cut through a lot of muscle and use a lot of mesh. It was good that you had it repaired.” I started to black out once more.

I woke up the next morning, feeling a little more lifelike. I took off my oxygen mask and this time no one stopped me. I turned my head and saw I had a new nurse escort.

“Good morning!” she said cheerfully. I smiled and tried to get out of bed, but was hit with strong pain. With the nurse I was helped to the toilet, and everything seemed to be going ok until I saw my gown was soaked in blood, and the blood was pooling on the bathroom tiles.

“Erm…Problem!” I alerted my nurse. She helped me back to my bed and pressed the call button. Cue a good half hour of wound dressing repair and being given strict instructions to remain in bed.

Which I did. For the next three days. The pain was intense, requiring high Schedule painkillers hourly (which ultimately resulted in unintentional opioid addiction…a topic I will cover some other time). Finally I was released…back to the state psychiatric facility anyway. My pain was improving, and I could move around. I had a few more days until my intended transfer to my last stop in the game of Hospital Hopping.

Indeed, on the Monday I was gleefully discharged from the State psychiatric facility, and checked in to a private psychiatric hospital; The Palace. I noticed that my stomach was ridiculously huge and casually asked my admitting nurse what I should do, given my recent surgery.

“Oh, I will see if we have a midwife on staff.”

My husband and I, both horrified, corrected her, telling her I was definetely not pregnant. But i couldnt even be insulted, given my size. The nurse was even more horrified, both at her faux pas and at my stomach.

“You need to go to the Emergency Department! She told us. “That”, she pointed accusingly at my stomach, “needs to be seen to.”

So what ensued was another hospital run. I brought nothing bar the clothes on my back, sure I had some sort of infection and I would be sent “home” with antibiotics.

But by the time we arrived I was having difficulties breathing I had gotten so large, and I was seen to suscpiciously quickly. I was told I most likely had a Saroma, or fluid collection over the mesh repair, and that it might need surgical drainage. I was taken to the surgical ward where I spent another three days.

On the last day my original surgeon came to see me to tell me that the Saroma didn’t need surgical drainage, and I could be discharged. “But there is something else…” he added.

Oh for the love of God, what now?! For a moment I wondered if they had seen a foetus on the scan. An immaculate conception of course.

But instead the CT scan indicated that my hernia had returned. I nearly hit the roof.

“That is possibly the most ridiculous thing I have heard!” I told him, all politeness going out the window.

“I know!” he agreed crossly. “I refuse to believe it is possible. The amount of mesh we used….don’t listen to what the surgical team tell you. It must be an imaging error….or something.”

His “or something” didn’t leave me with the greatest confidence, but quite frankly the whole situation is in the “too hard” basket right now, as my husband would say.

So basically my day surgery ended up as eight day surgery, and at the end of it all I may still possess a hernia.

Can I please catch a break? Please?