Spoons

I haven’t really spoken a lot about my lupus, this whole blog was mainly about my dysfunctional reproductive system and the problems it brewed up. But, now I have realised that Lupus needs to be spoken about, because it is more than joint pain and fatigue, it is toxic to the mind.

If you speak to anyone with lupus, we will say we have pain, we are constantly exhausted and the sun/heat near kills us… oh and we are great at taking meds, due to the fact we take a magnitude everyday. What is often missed out is the psychological pain that you experience, whether that is out of tiredness or the things you miss in life or in yourself.

For me, I can’t really remember what it was like to feel well, to be able to even walk upstairs without a pain in my knees. To be able to sit and feel the sun’s warmth on my face. To go to the gym and not feel like you’ve been dragged through the pits of hell the next day. I could go on forever about physical aspects of pre-lupus life that I miss, it takes a huge emotional toll on us. For me, I look at these beautiful girls my age, slim, pretty, the world their oyster… meanwhile, I struggle to look at myself in the mirror without finding faults with myself. The cortisone ‘moon face’ I have, that makes my double chin stand out like no tomorrow, the swollen fingers, knees and weird weight distribution. I am not saying that these beautiful girls don’t have moments like these, but it is the lupus and medications… medication I desperately need to live and feel ok… that have taken so much self confidence from me.

My favourite neologism/metaphor for lupus is the spoon’s theory by Christine Miserandino. It came about when a curious friend asked about what it was like to live with lupus, or a chronic illness. Miserandino grabbed a bouquet of spoons at the restaurant and handed it to her friend, stating that people without chronic illness usually have unlimited energy and potential opportunities (100’s of spoons), but for someone who is unwell, those spoons represent the amount of energy you can spend in one day, lets say 15-20 of them. The two girls went about their day and slowly the amount of spoons started to decrease with every activity, getting out of bed, going to work/uni, cooking dinner, personal hygiene, everything caused a decrease in spoons, with no spoons remaining at dinner time, the friend broke down and asked how she managed everyday. The answer is, we have to, its not going away, we have chronic conditions, they are here to stay, you just have to deal with it. Some days are easier, little less pain and you feel like you can take on the day….. other days every joint in your body aches and you think to yourself… “If only I had a catheter right now, I would put it in myself so I don’t have to get out of bed to wee”.

Using the spoon theory, relationships suffer too. Every person you love and care for deserves a spoon, some of that energy, but sometimes the spoons are scarce. You try so hard to catch up with friends and family, but your energy, like a fuel tank is on E for Empty and that light is god damn flashing at you. You can’t help but feel a sense of guilt for the things you put those you love through. Whether that is constantly worrying your Mother and Father, as well as borrowing money for specialist appointment and crying on the phone, or your boyfriend, who you can’t help but feel as though would be better off with someone who had a magnitude of energy, someone who isn’t broken, a non moon faced, perfect girl. I am grateful that I have these amazing people around me, but I feel guilty that they have to experience a slice of lupus too.

All we want to hear is how much of a good job we do. How much we are loved, appreciated, some validation. Although we are not who we used to be, that pre-lupus person is in there keeping us from totally losing ourselves. Check up on your friend who has a chronic illness, not just asking how their physical symptoms are, but how is their mental health? They may need to vent, like any normal human, we all have problems we need to rant about and it is that support that gets us through.

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Eight of me.

All eight eggs survived the freezing process, which was the best news I had heard in ages, the relief was absolutely huge and I was glad the struggle wasn’t for nothing. As happy as I was about this news, I was anxious it wouldn’t be enough and that my dreams of becoming a Mum may not happen with such a small group, so I tried again….. well I got to today and threw in the towel.

To start the process, I had to regulate my cycle, meaning taking the dreaded pill….. the devil in my body’s eyes. I can tell you, we are not pals, because a pal doesn’t give you intense anxiety, make you cry for no reason and cripple your already buggered joints…. all whilst trying my best on placement and juggling uni work. Not to mention the breakouts that even the best facial routine can’t fix and the weight gain….. Magnum’s were on sale ok!! But the main problem, it made my lupus so much worse….. which is such a dangerous game to play with my unstable state.

My parents saw the decline in my physical and mental health first time, but this time it was almost an instant pickup, their Daughter is suffering. Which I am, the pill is causing me grief, I can’t imagine carrying on to start injections next week, I would be a right mess and I can tell you it would not be pretty. So I decided, my health comes first and if I feel like pure shit everyday, its not living, I need to be healthy to focus on uni and get myself where I want to be.

There is a part of me that is worried that I will get to the point of trying for children and regret that I didn’t get more…. but the wise man strikes again… he told me that it won’t increase the chances ten fold, it would only increase the likelihood very slightly, which is true. It pays to listen to your Dad, he comes out with some good advice.

I am not a quitter, I gave it a shot, got my eight eggs and that’s that, because this poor body can’t handle this crap again…. hats off to the ladies who do this for years…. you are my heroes. We will get there, with some of the eggs resulting in babies, or adoption or even using Cienah’s eggs (she’s got better eyes and is smarter anyway, ahah), but we will get there, one way or another.

 

 

Ice, Ice babies.

My Dad is a wise man, he is a realist and although sometimes being realistic can be tough, he always says “don’t stick your head in the sand like an ostrich”, or “hope for the best, prepare for the worst”, or my personal favourite, “don’t count your chickens before they hatch.” These have been my mantra’s over the past four weeks, because I have had to be realistic, to avoid potential feelings of devastation with my egg collection cycle.

“One step at a time”, another piece of advice from the wise man himself. The odds were against me, a low AMH, one ovary and a plethora of health problems, so I can tell you I wasn’t planning on getting 20 eggs, to be honest, I was preparing for the worst, to get nada.

Walking down to have an ultrasound last week, I was prepared for the doctor to tell me no follicles were there, but hoping I was wrong. Now, it may sound like I was being pessimistic about the whole situation, but every ounce of my being wanted him to tell me it was all good, but sometimes realism is important and getting your hopes up sometimes can fail miserably, it’s a balancing act.

Laying there, the doctor came out with a “Wow, you are doing really well for someone with such a low AMH! I was thinking we were not going to get a good result, but this is positive.” Let me tell you, I have never been so shocked and relieved, because jabbing myself everyday was actually producing an outcome.

Was I glad it was working, because the side effects of those injections are nasty! I was thrilled to hear the shit skin, bloating, lethargy and increased hormonal state (have you ever cried at a Missy Higgins/ Ed Sheeran concert? Because I have, the whole bloody show!) wasn’t for nothing, because I can tell you, my apartment would have suffered due to my episode of rage if he had of given me bad news.

The next ultrasound, although having good news last time, I was still wearing my realism hat, expecting the follicles to not have grown. But, my body proved me wrong, I had more follicles and they had grown! Well, I’ll be buggered, am I actually going to see some eggs frozen!? Shock and horror!

6:30am, Mum and I dragged our weary heads to the hospital, ready for the big day, the day I have some eggs collected…. AKA time to be poked, prodded and lose another piece of that dignity. As I walked to the theatre room, Mum tells the nurses “Go and collect my Grandbabies”, I can tell you, that woman is going to bloody adore these future kiddies, because she already dreams about them, as do I.

Here I am, laying here starring at the ceiling lights, being jabbed with needles feeling very drowsy and suddenly up in the stirrups I went (another piece of that dignity gone) and then I was out cold.

I cannot fault the nurses that looked after me today, although they are on a time schedule, they made me feel so comfortable, made me laugh and were absolute angels, it made me realise how much of an impact we nurse’s have on a patients experience.

I woke up surprised that I was totally with it, because usually I am a zombie, I felt like all I did was blink and it was all over…. Thank goodness for anaesthetists, I have to give my thanks to the doctors, because they were amazing too, I was all round lucky.

8 eggs, from one ovary, pretty impressive outcome given the circumstances! But, as the wise man said “don’t count your chickens before they hatch.” Although 8 may seem a lot, I am still waiting to hear how many survived freezing and then when the time comes, thawing, fertilisation and transfer is to be taken into account. Now, I must admit, I have stupidly googled success rates and scared the shit out of myself, worrying that 8 isn’t enough.  So, we won’t get ahead of ourselves and say we are out of the woods yet, there may be another cycle, depending on what the doc’s say, but I am happy to say my body has surprised us all, it’s about time!

Today, I realised, we women are a tough breed. Sitting in the ward surrounded by women in similar circumstances, I realised how strong a Mother’s love can be. We are willing to put our bodies through some horrendous shit to bring apart of ourselves into the world, I think that’s truly incredible, IVF or natural conception, we are all Queens!

Kimmy K in the making?

Surrogacy…… something I definitely didn’t think I would be writing about. I always had this perfect idea in my head of being pregnant and birthing my own babies, experiencing what my fellow sisters go through on a daily basis.

It came as no shock to me that with active lupus (and anti-double stranded DNA levels out of this world), one ovary, half a uterus and an extremely low hormone level (egg level), surrogacy may be the only chance of having biological children. I honestly thought I would be 30, married and have my life in order before children even crossed my mind, but how I was wrong, because that is in my face everyday.

When my rheumatologist started rambling on about surrogacy, I really didn’t take much notice. I kind of brushed off his comments because that isn’t his area of expertise. But when having a conversation with my amazing gynaecologist, she mentioned I was welcome to try to carry a child when the time is right, but surrogacy may be safest for me and for a child. I trust this woman with my life, so I came to accept her advice pretty quickly.

So here I was, thinking about what the rheumatologist said “pick a friend with the pelvis the size of a truck”, I cannot stop laughing to myself about this comment, because I don’t think friends would appreciate me picking their body on the size of their pelvis! When the time comes, asking someone to ruin their lady parts and carry a human that isn’t theirs, is a HUGE ask….. don’t worry ladies, hopefully I can pay for a reconstruction!

Surrogacy talk struck a cord with me…. now it takes a lot to make me scared or sad these days, but I may have had a slight moment of weakness and let a few tears flow. I think it was a feeling of failure, a feeling that I am not a woman….. which is ridiculous, but you can’t help but feel this way when your body is unfit to carry or conceive a child.

I have also been given the green light to start egg collection…. so stayed tuned for hormone fuelled me, complaining about having to inject myself everyday…. which isn’t that bad, I’m just a wimp.

So here I am, the next Kim Kardashian, but don’t worry guys, I won’t be getting involved in any adult films or getting booty implants anytime soon…. but if Kayne has any rapper friends???

Disaster waiting to happen

“Young Women like you have this fantasy of how your life is meant to be planned out, but reality is it isn’t going to happen…. buy a puppy, they are easier”. These are the words that bought my blood to the boil during my visit to the rheumatologist today, ones that will stick with me forever. My Lupus caused me to be referred to a rheumatoid specialist to ensure that I was on the best treatment plan possible, but instead, I walked away with fear of death and a cancelled egg collection cycle.

I went into the doctors office with my darling Mother, expecting the Doctor to review my medications and ensure that I was on top of my Lupus……. But, as I should know by now, expecting things to go simply will always end badly. As soon as I entered the room I felt as though I was at uni, being asked questions about antibodies and biology, I was thinking “Mate, aren’t you the specialist here? wtf are you asking me for?” and then came the depressing conversation, lacking hope and causing me to become frustrated. As I already knew, I am complicated, I have congenital abnormalities, I have a low AMH, which is not normal and my body is very different to a ‘normal’ 21 year old female. I also found out today that, I don’t just fit the lupus characteristics on a biochemical level, but also multiple different autoimmune diseases…. as if one wasn’t enough…. as I say, I am complicated.

As soon as I told him I was having eggs frozen he shattered my dreams, by saying that a I am playing with fire if I choose to carry my own child and a surrogate would be a wiser choice….. now, I must admit that he is in some respects right, but the way you tell a 21 year old female that has to be sensitive and I can tell you now, nothing about this conversation was sensitive. Don’t get me wrong, this Doctor is an excellent specialist and his knowledge on rheumatology is exceptional , but the bed side manner is an aspect to improve on.

Then came the scary part, being told that you are so sick and that your autoimmune disease is so unstable that if you were to start injections for egg collection (which I was meant to begin on Sunday) you could potentially die, because he has had cases where women have ended up in ICU on their last legs. So, being told that doing an elective procedure could kill you or make you extremely sick in your current state really shakes you up. So, my autoimmune diseases need to be contained before I can start the cycle….. just when I bought the injections and psyched myself up for the ordeal.

I could never have done this without Mum and Dad, they are my rocks, come with me to appointments and would move heaven and earth for my happiness and health, I am so lucky to have them and I will always be grateful for their love and support…. you have to always find things to be thankful for, because they are there.

Apparently, I am a disaster waiting to happen, so lets all wait and watch the disaster unfold….. But despite this all, I have had my anger episode, cried my tears and now I am determined to beat this, level out my antibodies and ensure I am at my best health to tackle this egg collection and give my future babies the best chance at life…. but I keep thinking there are always options…. so many babies who need a Mum, I will be a Mother, one way or another…. just watch me Doc.

Titanium heart

The past few weeks have been absolute madness, with doctor appointments, tests, new medications and of course, trying to manage my uni work load. Bare with me while I fill you in on the hectic few weeks of Ayla Lette.

From a Lupus stand point, I can actually get out of bed in the morning, without feeling like I’m a 90 year old woman with arthritis. Cortisone has been a god send and I am soooooooo happy that I haven’t put on weight or puffed up like Michelin woman (actually lost weight….. go me!). But, the immunosuppressive medication has hit me super hard, resulting in me catching the worst cold I have had in years! I had no idea that lupus could potentially cross the placenta and cause problems, such as congenital heart block, if I was to possess the certain antibodies, in which I am still nervously awaiting the results. As if I didn’t already fall into the high risk category when I get pregnant….. life is throwing its force at me!

Three weeks ago I went to see an IVF specialist about the possibility of egg freezing for sort of like an insurance policy, especially when I only have one ovary left. The Doctor explained to Mum and I that the risk associated with egg retrieval is higher than if I was to leave the ovary (higher rates of infection and complications, than developing an issue that may affect my remaining ovary). But, he suggested that I have an AMH level done, to  measure my ovarian reserve. If it was above twenty, fantastic, leave the ovary be, if it was ten or below, egg collection will be necessary to save my future fertility. At the age of 21, even with one ovary, the level should be high, so of course I entered the Doctors rooms today feeling hopeful that I was ok.

All I heard from the Doctor was “AMH level is 4.7” and “I am sorry I couldn’t give you better news”. My heart sunk and it took all my strength to not burst into tears. Luckily for me, Dad was there to ask all the important questions and for much needed support. From what I can gather, in my still in shock state, is that because my AMH level is low, it means that they will not be able to collect many each cycle, so numerous cycles are planned to gather as many eggs as possible. Usually an low AMH level is seen in mid to late 30 year olds, which is concerning, but at least I am aware and put plans into action, instead of discovering that my ovarian reserve is near 0, when I do try and have my babies.

As soon as we walked out of the building, I latched onto Dad and balled my bloody eyes out, thinking “why the f*ck is this happening?”, I felt like the world was so against me and that every possible obstacle was being thrown at me to prevent me from ever becoming a Mum.

But, I soon cried and got over it, because you know what…. I have so much to be thankful for and although its a shitty situation, this year’s obstacles have just put another titanium layer on my heart, so to speak, making me harder to break. To overcome my sadness I reeled off a list of what I am grateful for:

  1. I have a loving, healthy and supportive family, who I adore.
  2. My friends are the most beautiful people on earth, with a few even offering themselves for surrogates or to donate eggs, to see me become a Mum. (You have no idea how amazing they are!)
  3. I have a roof over my head, food in my stomach and I am safe….. so much better off than most people in the world.
  4. I can afford to see a doctor when I need to and have access to medication and treatment.
  5. I am going on the most amazing American holiday in 2018.

The list could go on and on and on! I am so damn lucky and this is what keeps me going! I have always wanted to be a Mum since I was a little tacker and I’ll be damned if this rubbish is going to destroy me, because even if I can’t have little Ayla’s running around, there are so many children who need a loving mother and that is what I can and will be.

Life is a bloody bumpy road, but I am ok with bumps; one day I will look at my children and smile, because its going to be a whole lot sweeter to have them with me after all this.

 

 

 

Loopy, in more ways than one.

I had a period of two weeks after my operation where I felt absolutely incredible! No pain and I felt like I could put all my health troubles aside and focus on my studies, getting eggs frozen and losing my ‘winter coat’ ready for summer.

Oh how I was wrong! It doesn’t rain it pours as they say! It all started on placement when I noticed that my fingers were swollen and stiff in the mornings; telling Mum and Dad I thought I had arthritis, half joking, with eye rolls coming from them both. The next week saw the movement in my fingers decrease and the pain waking me up at night. I had to do something, so luckily I was surrounded by Doctors on prac; where they were more than happy to help and see me as a patient. At first I thought rheumatoid arthritis, but blood tests came back negative for that, but positive for anti-nuclear antibodies or ANA (in short, meaning it was likely an autoimmune connective tissue disease). More tests were done to confirm and narrow down the disease, turning out to be lupus and meanwhile I was getting worse…. the pain was excruciating and trying to extend my fingers became impossible! Last night I had such a shit sleep, waking up aching all over and having frequent showers to try and manage the pain.

I refused the cortisone medication last week, people had told me that they cause you to blow up like a balloon…. the last thing I needed when I was seeing progress in my summer body! But guess what, the pain was so bad I gave in and threw down those tablets as soon as I got hold of them! I look at it this way; number one, I don’t want to be pain (I could not get out of bed) and number two, I am not allowed in the sun with lupus, so nobody will be seeing my half naked body at the beach… instead you’ll see me in the shade in long sleeves, hat, sunglasses (like I’m hiding from the paparazzi).

I didn’t know much about lupus before I was diagnosed, I knew it was an autoimmune disease, but I had no idea the implications. I am still learning, but from what I can gather, it can potentially cause damage to kidneys, nervous system and other major organs, luckily there is medication for that.

You will be hearing from me soon, when the cortisone has kicked in and the immunosuppressants (to calm my immune system….. so basically, keep well away with any sickness). I’ll either be singing the praises of the scientists who developed these drugs, or will be able to be mistaken for a Michelin women 2.0….. maybe both hahaha! Who knows, but the most important thing is that I keep my chin up, laugh it off and give lupus the bird, because it’s going to take more than that to bring me down… 2017 has toughened me up.

P.s Mum has decided to start calling me loopy…. on ya mum, trying to make light out of a shitty situation! Not to mention her taking the piss and asking “do you want your walking frame dear?” She’s a gem, where would I be without my friends and fam ❤️