I'm not really even sure how to write this - because it will be long... And I don't know where to start... Because its a long story.
It may be depressing... Because it is depressing at times... It may be uplifting... How I pray so.... It may not be relevant to you... And that's ok. This is my story. I pray you'll read on, and maybe, just maybe, it will encourage you to keep going... Even when all you feel is blahhhhh.
Many of you will know I was born with a rare medical condition ( about 1 in every 1 million in Australia). It can affect people to various degrees, and show up in very different ways, depending on the person. So no case is exactly the same.
For me it meant early puberty, chronic bone and neuropathic pain from as young as I can remember, countless painful bone and reconstructions surgeries - which equates communicably to years spent in wheelchairs, on crutches, in plasters, hospitals, rehabs and physios. I've been on more medications than I can even remember, been on and off various medications, been addicted to some, experienced long and painful withdrawal processes from medications.
I've had more specialists than I can even remember, and the majority of them had no idea what McCune Albright was... Let alone had they ever treated anyone with it.
When I first started breaking bones and going through early puberty and having other issues, no one knew what was happening. It took many years to get a diagnosis and even then they couldn't tell us much. Over the years more research has been done and we've learnt more - but it hasn't necessarily bought more hope or help.
I have always tried to have hope, work hard and be positive. For me, my coping mechanism has always been do more... Help more.... Focus on others. Not everyone finds this helpful - but for me it was and is still the best way for me to cope - by focusing on what I have, by doing what I can do, especially to serve others and to improve the lives of others.
My parents could always tell when my pain was bad - because I'd clean more or do more things- I'd be doing more ministries at church or helping someone else with their children or whatever it may have been. People couldn't tell how much I suffered because I didn't let them, I tried to focus on others instead of focusing on what I was suffering.
I never once have believed God gave this to me ( anyone that says he must have or something along those lines does not know the God that I know... Doesn't mean He can't use it to help encourage others or didn't allow it... but he didn't cause it... if you need explanation - email me on that)
Well many of you know I've experienced many miracles in my life - despite the health challenges and diagnosis.
I was never supposed to have children - I have three boys now!
I suffered very rare and dangerous complications in those pregnancies - but God was faithful and here they are.
Hezekiah was actually an ectopic pregnancy. Diagnosed medically as an ectopic pregnancy. That impossibly moved... In the process of being transferred to the city in Uganda for treatment.... it corrected itself?! The baby that was in the fallopian tubes, now in the womb, and fallopian tube completely ok... 24hours after the first scan..... minds were blown.... prayer works! My faithful little brother and husband prayed for the baby to move, and it happened!
So we've seen miracles - not just health ones. Many financial ones - we've had times when we've literally had nothing, and have school fees due for one of Rob's brothers... and suddenly the exact amount we need ends up in our bank account - when we haven't even told anyone.
Or we need food - and suddenly someone delivers us food. We need transport - someone gives us a car, when again they didn't even know we needed one.
Constantly we are seeing little miracles.
But in 2017 we saw a really big one... It was November 18th 2017 - around 8.10pm
Let me backtrack a little bit.
My younger brother ( who is a great man, of great faith) found out that one of the Pastors from Uganda was coming to a conference in Perth. Pastor Kayanja is the pastor at Miracle Centre Cathedral in Kampala - Dan ( my brother) had attended their big revival meetings when he'd been in Uganda and had seen God do amazing miracles on these nights. ( Rob and I now attend MCC when we are in Uganda)
You see, 2017 saw us back in Australia having Ezrael - and it was a hard road. Since Ezrael was born at 34 weeks - and had struggled at the start - the normal withdrawing off the medication that me and our boys have had to endure after the pregnancy had to be postponed for longer than we had planned. So when Ezrael was 4 months old - Rob had to return to Uganda. We were left behind to start weaning off the medication and get well enough to go to Uganda. This was not an easy process - and was very, very slow. Slower than we had done with Hezekiah. Ezrael just struggled with the weaning process - super unsettled and struggled to eat with the weaning process. We had thought we'd get home by October (Rob left in June) but November came and my Doctors said, with the way we were going - it would be highly unlikely we could return to Uganda until probably March at the earliest! This seemed so far away. But I also knew we couldn't rush the weaning process. All of this hard trial and the constant struggles and chronic pain and my chronic health issues - lead Dan to say - "Leah lets go to Perth for this conference - lets go believing for your healing".
In all honesty - I wasn't that keen on going. I knew God can do miracles - I have seen Him do many (Hezekiah & Ezrael to name just two.... but also my brother Jacob and many others)
But I had been sick my whole life - I was born with McCune Albright Syndrome - and while I always prayed for a miracle and had been prayed for many times - it hadn't happened. It wasn't even that I didn't believe it never would - it was more that I prayed it would, but I also needed to just focus on a day at a time. Plus, I thought spending all that money to go to Perth - I'd rather save the money to help get us back to Uganda when the time comes.
Dan didn't let my hesitancy stop him - he pushed ahead and booked and paid for the whole thing. Arranged it all (including my SIL and dad to look after Hezekiah) And off we went to Perth. As everything fell into place, I put my complete faith and trust in believing for that miracle!
We went along to the Saturday night and thinking it was Pastor Kayanja who would be preaching that night - we were surprised when they said that he still wasn't in the country and a different Pastor would be preaching. Someone I'd never heard of, but also an African Pastor who now Pastored a church in Toowoomba. He preached a powerful sermon - we forgot about the focus on healing and just focused on the message and being present. The night was almost to an end, when the Pastor offered if people would like prayer for healing, they could come to the front and people from the combined churches from around the city would pray for you. Dan and I kind of looked at each other, do we go or wait for tomorrow for Pastor Kayanja ( it was his ministry that had lead us to come) .... but we both were like - we came for Jesus - it's God who heals... lets go. Many people (including Dan) surrounded me and spent time praying for me and spoke beautiful, encouraging words over me. After maybe 10 or so minutes as Dan prayed I suddenly felt pain leave my back (now remember - I don't ever remember not being in chronic pain - its been a constant companion since childhood) so it was a really strange feeling - and then as they prayed pain left my hips and legs..... again so strange.... suddenly as they prayed again for any remaining pain anywhere to leave.... it did..... I suddenly felt - free!? I don't even know how to explain what a difference it was. I felt light.
I went up on the stage later and spoke to the Pastor about what God had done - he got me to do things I hadn't been able to do before (bend, jump) I broke down... no one could have known what it meant... or what I'd been through. Mum and Dan obviously had some idea so it was huge for them too.... but unless you have lived in chronic pain, rare syndromes and chronic health struggles - you can't really understand.
We went back to the motel that night and it was just like walking on a cloud! We were all on a high. When we got back to the motel I was almost due for more medications. Now its hard to explain or a lengthy explanation - but Ezrael and I were both in the process of weaning off heavy pain medications (opioids) If you've been through this you may have an idea of how hard it is. Ten times harder with a baby also experiencing it. Ezrael was a super unsettled baby - he barely slept - you'd lay him down at 7pm for bed at night - and by 8pm he would have been awake probably 5 times. Most nights I slept with him literally sitting up on my chest. Because of how hard the weaning was on him - we had changed the dosage and were only going down 2.5mg a week - not much at all. We were still on more than 1000mg of various heavy pain medications.
When I realised it was almost time for medication - I said to Dan - "well if God's healed me - I don't need these meds anymore! "
Now stopping any medication - or even increasing the amount we went down by is incredibly dangerous - for me - but also obviously for a 6month old baby. Dan said - "lets ask mum"(who was having a shower). When she came out, we asked her opinion, and being a woman of great faith.... she agreed - I didn't need them.
So then I shocked them by taking them all and flushing them down the toilet!! There was no going back. We put Ezrael down to sleep - and wondered what the night would bring... we all went to sleep - believing if God had healed me of pain, then he had also dealt with the root causes of my condition, and that I also didn't' need the medication anymore, that He would protect us. It was such a strange feeling laying down and not being in excruciating pain, and to be able to just fall asleep easily.
The next thing I knew it was 6am, and Ezrael was sitting in his cot whimpering. We all woke up and couldn't believe we had slept through the night! No withdrawals! Ezrael was hungry now but seemed fine in every other way. He didn't scream like he was in constant pain. His cry was different now (withdrawing babies have a distinct high pitch cry).
It truly was a miracle - he was smiling, and giggling. Like a completely different child. I had no headache, no sweating or excruciating cramps or muscle spasms. NOTHING! We had gone off every medication in a matter of hours and we were fine. A week before, going down 2.5mg was knocking us both around!
I have never felt so much joy and freedom! We spent the day walking around Perth. No pain, no withdrawals! We went back to the conference that night - as we walked in - I started to have pain in one small spot again. It was very strange. I was like NO NO... you are not coming back. God has healed me. Pastor Kayanja preached a powerful sermon, and I went forward for prayer again, for not just the pain to leave but everything attached to it to leave. They prayed and all pain was gone again and everything felt new and fresh!
We left Perth the next day completely changed. I'll never forget the joy of being able to call Rob and my Dad and explain what had happened. Or the moment I shared with all my family a week later how life had changed.
And seeing my Dr a week later - she knew instantly something had changed. She said she could see it in my eyes - the pain was gone. She could see Ezrael was different. I shared everything with her. She cried and couldn't explain it. She agreed even just going off the medications and nothing happening, was just a miracle in itself. She knew everything was different. There were so many other symptoms I experienced and was struggling with that I was waiting for tests and treatment of.... but they all left in that weekend! Too many things to mention here.
I needed theDr's clearance to fly home - she gave it to me - only a week after saying it would likely be months and months before we'd be ready!
Friends came forward and said God directed them to book us tickets home to Uganda and paid for it all. Within 14 days of being told we may not see Rob for another 5 months at least - we were on the plane flying home to Uganda. Healthy and healed.... pain free!
For the next 2 years I lived completely well and pain free - no McCune Albright issues at all ( had malaria and typhoid but no chronic 24/7 sickness!) We were able to focus on our boys, and building up the foundation because my health was no longer an issue. The change was huge. I was the fittest and healthiest I had been EVER.
So that is my big miracle (as well as our boys obviously) But it was a big one for sure! And living free of sickness for that time - was an incredible gift.
Now comes the hard part to understand. While I was pregnant with Adlai, my health started to deteriorate. I kept trying to push Rob to let us have the bub in Uganda - as now my health was fine. He wouldn't hear of it at all. I seemed to be suffering from HG again in this pregnancy. But besides that, I wasn't having a lot of the other issues in the early stages that I had with the other boys. But once I returned to Australia - around the 18 week mark, once again, the swinging uterus begun, and the chronic pain and other issues. They put me back into the High Care team at John Hunter Hospital and honestly, I felt pretty deflated. I couldn't understand why this was all happening again. I tried my hardest to justify it all saying it was just the pregnancy and as soon as it was over I'd be all well again. I didn't know if that was true or not.
My Doctors, even though they had seen the miracle, and couldn't explain it, talked as if it was McCune Albright as always and it was what it was. (none of my conditions could or would suddenly just overnight be completely gone for two years... that doesn't happen so there was no explanation still for the miracle that occurred).
I held on to the knowledge that God was good, I had received a miracle, and despite what was going on now, I was carrying another little miracle, and that whatever the future looked like, we'd get through it. we were really praying hard that good health would return when Adlai was born. Having to go back on the heavy medications during the pregnancy was extremely difficult for me. Knowing what I knew about the journey it would take for me and for our baby... and then the process of having to get off it. It almost broke me. But then when you are told its better for the baby to be on it then off it, you do what needs to be done. So I did.
Adlai's birth was by far the hardest, after a life time of medications and with the way my nerves/muscles etc work - it is hard now to find medications to actually help. I was on the heaviest pain medications available after the C-section. This meant no breastfeeding at all for 10 days as it wasn't safe for Adlai. The first 10 days I actually don't remember - I need to look at photos for things to come back.
In those days I was in high care maternity (they made a special room up for me - I had my own nurse/midwife - and she has no one else to care for except for me) - we have always been so blessed by JHH care. I spent those 10 days (remember it was in the middle of COVID lockdown) in a room with no windows and only seeing Rob and my Drs and nurses. And occasionally Adlai, when they bought him down from NICU. I spent my days in and out of a semi conscious state, still in pain. Often hallucinating from the medication.
The first day they got me out of bed (about day 5) was excruciating. I've had more than 16 surgeries in my life and while I can't remember much from that week - I remember that.
After 10 days in high care we got moved down to the ward for another 5 days stay.
Going home, it was hard to realise that while we had this precious little new life, I was on the same road medically and physically. I knew what the next 6 months were going to look like. And I struggled with that greatly. I thought it would be different this time. I'm thankful for Rob, who was the only one who I really bared my soul to on how much my faith was being shaken.
I kept holding on to the hope - that once healed, off the medications - I would be completely well again.
I can't go into all the details of what those next 6 months looked like - but it was much like the previous recoveries from the pregnancies and births. Endless pain, endless medications and physios, and endless joy too at the gift of a new life God had given us. I tried always to remind myself - that no matter what - me having children alone was a miracle!
The withdrawals were tough - but thankfully - not as bad as they were with Ezrael! So that was certainly an answer to prayer. By September/October I felt like maybe I was on the mend and that was feeling really good and felt a lot quicker than with the other boys so that was making me really hope I was going to be ok physically. My Doctors decided now I had managed to wean off all the heavy meds, that they would try and wean me down off the steroids I had to take during the pregnancy.
It seemed to be going ok - except I felt like I was dragging myself around. But I just put that down to the weaning process. Then I got sick with a chest infection - and it would not leave. More steroids to try and help it go - it did for a few weeks, so we started weaning again and then come Boxing Day, it was back and I felt pretty sick. For the next week I really struggled to get out of bed or to function in any way. I felt sick and strange and couldn't work out what was going on. My GP was trying to get in contact with my Endocrinologist, but being the new year break, that was proving difficult. She was concerned I may be going into an adrenal crisis. I increased my steroids but nothing was working well.
Finally, they decided I needed to go into hospital. When I showed up and showed them the identification card I hold for the medications I take - I was whisked straight through - immediately had a bed and put almost straight away on to IV steroids. This was my first adrenal crisis - so I didn't have any clue how seriously they would take it. Thankfully they did - because apparently many hospitals/doctors don't and people die.
I spent the next 3 weeks in hospital. They stabilised my cortisol levels and everything else - and while some symptoms improved - I got worse in many other ways. I was losing vision and feeling down one side of the body. I went in being able to walk - by the time I left I could not walk unaided. After weeks of trialling medications and various tests - I was diagnosed with inflammation on the brain. No idea whether it came about from the stress of the adrenal crisis, or an infection, or if it was a by-product of the chest infection I'd had. Recovery would be a long road - and the easiest place to do that was a quiet place. Thankfully we had a precious friend who took me in.
A clean diet was recommended (more friends jumped on and did my meals and would deliver them ) Rob would come and do physio with me. But there would be no contact with my boys. I couldn't cope with light, sound, or any noise at all. I hadn't seen them in 2 weeks already and Doctors could not tell me if recovery would be 2 months or 2 years. I needed a walker to even go 10 steps to the bathroom. I couldn't shower unaided. By the time we were at my friends house - I could barely see out of either eye.
It was one of the scariest and loneliest times of my life. Back on lots of medications, with what felt like very few answers. Lonely for my husband - but knowing he had to stay at home with the boys. I only saw him for a few hours every few days. Missing the three boys - Adlai was only 8 months. He changed so much in that month I didn't see him.
As I sit here and write this, I struggle, to relive those days... They were dark and scary and I felt I couldn't quite communicate to people how bad I was without scaring them too much. I already saw the fear in Rob's eyes whenever he'd try to do physio with me, I knew, he knew this wasn't going to be an easy or quick fix.
He was supposed to be studying for his exam, the most important and hardest exam of his life, but instead he is having to be mummy and daddy to our boys and try and care for me in between and run the organisation too.
I am so so thankful God did a miracle in that week. One of my precious friends started coming after work each day to do communion with me and to pray over me. The friend I was staying with would join in, along with my younger brother when they were there. Each day after we started doing that I started to feel stronger. Miraculously. It's like it was reminding my body - what Jesus died for on the cross. To take away sickness.
Then one night - loneliness was closing in, fear was closing in around me. Like a heavy black demon. That's what it felt like. Thankfully - friends in Uganda were rising up to pray. They prayed all day (all our night). People here in Australia and our friends in the USA rallied to pray too.
I felt like I had this choice before me, life or death. Faith or fear. If I gave into fear - I felt it would consume me, and that recovery wouldn't even be possible. I could talk more and more on what happened that night spiritually - but that's more a conversation over a cuppa! All I know is I finally fell asleep about 2 am knowing people all over the world were praying for me.
When I woke at 7.30am - I was shocked - it was the first time I'd slept like that without constant pain, excruciating headache and having to take more meds through the night. I tried to get up. I got up out of bed unaided. I walked to the blind and opened it. I was able to cope with it open slightly! I decided to try and walk to the bathroom on my own. AND I DID!
When my friend came in with my breakfast she was IN SHOCK! She couldn't believe it. She said goodnight to me the night before and I was undercovers, unable to do anything for myself. And here I was sitting up in bed, with blind open, having been able to get up and changed myself!
Rob cried deeply when he saw me. Something had changed. It was a miracle. I recovered so much in the next 48 hours, I decided I wanted to try and go home. Noise was still a bit of a trigger - but I missed the boys so much! So I went home! More than a month away from home, when I thought I was just going to be in hospital for a few days! What a homecoming! What a reunion!
I went to see my doctors a few days later. They expected me to still be on my walker, sunglasses on etc. I could barely hold a conversation and any noise would cause me to cry days ago.... and I walked in. Smiling - they said - even with what I had done (medications, clean diet) nothing humanly done would have made such a significant difference in that length of time.
I went home, knowing God had done another miracle. And believing healing would continue to happen. It was a journey and a process - I continued to wear headphones for about 6 weeks after that. I couldn't read or touch a computer for about 3 months after returning home - but I have gotten there overall with the brain inflammation. I'm still doing what I can to continue to improve it. But God did the miracle.
I thought finally - we are on the road to getting back to the 'new me'.... the healed me after 2017. . . but April was going to bring more hardships. I felt like I had been improving - and because I did improve so dramatically from the brain inflammation I probably missed the early signs that something else was going on.
I started to notice that I was getting more and more exhausted again - I was starting to have some strange episodes and felt like my health just hit a brick wall. I had my check up with my endocrinologist after my hospital stay. He was happy to see me doing better after the brain inflammation. But he also had some bad and surprising news. He said - it was clear to them now - that my body is not making cortisol anymore. They had tried weaning me - and it had sent me into an adrenal crisis. Before with the previous pregnancies, I had needed the extra cortisol to cope with the stress of the pregnancies on my body - but after I'd been able to wean off. But this last pregnancy and all the medications had completely destroyed my adrenals and pituitary gland. They were fried.
Which meant the diagnosis of Addison's and life long steroids. It explained all the strange episodes I was now having, and the new challenges health wise I was facing. This diagnosis came as a big shock (and came the week of Rob's exam of course) so we put it on the back burner to focus the week on Rob and then to look at it after.
It's very hard to explain what it means to not have any cortisol in your body. Its a life threatening condition. It has to be managed well - or can not just result in death, but other life long complications. In simple terms - I have no fight or flight mode anymore. My body can't cope with any physical, emotionally, mental stress without the aid of steroids. And even then, it struggles. It's a constant battle to get the dose right for each day. If you lived a life all by yourself on an island with no stress it would be a lot easier!
|Many days are spent like this (photo thanks to Ezrael)|
As we are learning more - and as I'm dealing more with the symptoms of it, and the side affects of the steroids and other medications I now have to take. The understanding of what this means - is heavy. Trying to work out how it also fits with my other health challenges/including anaemia. Learning to not only carry tablets everywhere, but emergency injection kits. And having to teach others how to administer it if needed.
I have mini crisis's often in the middle of the night when one of the boys has woken. One night Adlai had a fever, Rob and I were both up caring for him, my mama heart was hurting for him, and I was tired. When he was settled in bed, we went back to sleep. I woke up in the middle of a crisis an hour later and had to rush to have more steroids to settle and stabilise my body.
A car pulls out of me in traffic - my body has no cortisol to give a burst to calm down (which is what normally happens in sudden stressful situations) .
|Very thankful for a husband/Dr in one|
You get a cold and you fight it off because of cortisol helping the body to do that - I don't have any - so more steroids are needed to help fight off even the slightest thing. But then steroids also suppress your immune system! So it's a constant battle.
Some days you wake extra low on cortisol and then can't get out of bed - or run low all day.
I'm apart of a support network now and that has been wonderful to help and understand everything - but can also be quite disheartening to see the lifelong battle it is for people, and also to see the number who die from it or from complications associated to it. But I am thankful that there is a support group - even though its rare - its not as rare as McCune Albright Syndrome which I've never seen a support group for.
Each day is different and you can never know how you will be really - so it makes it hard to plan. Having one good day, doesn't guarantee a good day the next (actually usually the opposite because you are exhausted)
And just because you look ok doesn't mean you are (anyone who deals with an invisible illness will understand that) In fact for me, generally on the days I 'look' better, it's probably a bad day, or had a bad night... because I've gone to more effort to hide it 😆
For me being normally being a people person, I find even being around a lot of people more challenging - which I hate - because I don't feel like my normal self anymore.
This is a strange journey - especially when we are in a season of waiting. A season that feels like we are just in between.
Sharing my journey at the moment hasn't been one I have really had the energy for, but I also realise people do not fully understand what we are going through, and that makes it hard.
I also, always... want my life to count. Not just when we're in Uganda, but wherever I am. Whether stuck in bed, on the lounge, or home-schooling my boys or speaking about injustice at an event.
I do not want to stop believing in a good God, despite how hard our circumstances are right now.
I do not want to stop counting the miracles that we have seen God do before, or the ones I see around me each day. Especially the three running under my feet, or comforting me when I am not well.
(Thankfully Hezekiah walks around singing A Million Little Miracles at the moment, so that reminds me often of all the little miracles and big one's we have experienced before!) Check out the song here: https://www.youtube.com/watch?v=2UXkAYO5hwg
I do not want to allow another health challenge to steal my faith, nor my joy.
I want to allow even the hard struggles of life to refine me, I want to be more of who God calls me to be.
I want to be that person who believes and sees miracles, and keeps seeking them, while also walking through the valleys with my head up, accepting that whatever the outcome - God is good and that I still have a choice about my attitude through the journey.
I want to know that if I died tomorrow - I did so living a life of courage and faith and peace in all the circumstances I faced... and that maybe, just maybe, I was able to inspire someone else to keep pressing on... and to count the miracles and faithfulness they have seen... even while looking for another one.