When I read over this last one it stirred up some old feelings and emotions; they weren’t a very pleasant time to be in but to know me is to know them. This entry is longer than the last one [so go make that cuppa, come back and get comfy…….. I will wait for you to return before I start……😁😜]. This was a day of reflection, contemplation and acceptance for me. A deep and brutally honest rendition.
23 December 2013
What I am going to share with you now is a secret of sorts [wont be for long!!] that I have not mentioned to many people but it has been on my mind A LOT: I did not believe I would live a very long life [bit morbid but it is what it is]. I always had this feeling I would die young. When my son was young, try as I might, I could not picture my life past a certain point. I struggled to see my son grow older than a young adult or myself as an old woman. I could not picture my life past that point. I tried to picture my son with children as any parent would but my mind would deliberately stop the imagination feast and replace it with this blackness. a feeling of emptiness or nothingness – it’s not that I could not imagine him with kids because I could, it’s just when I tried to visualise my life as a grandmother enjoying his children my mind said “ ahh no we won’t be going there today” [I am sure this has everyone confused, but it really is hard to explain, sorry for my sloppy attempt here]. I was plagued by this feeling [a knowing] that I would not be here to see any of it. This phenomenon was perplexing.
Trust me I have an active imagination, don’t get me started on the ‘what if’s’ of life that stuff keeps me awake at night with bright colourful motion pictures of what would happen if…….. [oh the catastrophes that have happened in my imagination]. ‘What if’ the house burnt down, a favourite little ‘what if’ joke my brain liked to play on me every night when I first moved out on my own. My imagination had me leaping through windows, running through flames and being an all round super woman.
I kept these feelings to myself however, I did share them with my sister because I knew she would understand. There were times that this feeling would come over me and be so strong that I would start thinking I need to go to the doctor and be checked for cancer or some other life threatening illness but never did, I just kept it to myself besides how would I present myself to the doctor? I was healthy, no aches and pains, no real health issues past the odd stomach bug or cold. Actually all my life from childhood up to this moment I was very rarely if ever sick [oh there was the self inflicted kind but we will leave that sleeping bear alone! bahaha]. So instead of seeing the doctor, I would tell myself to stop letting paranoia fixate on my own demise and eventually the feeling would abate…….. if only momentarily.
Obviously, I am still here so this has not come to fruition, but there is a reason I mention it. I do believe it was a warning. I know for a fact that God has save my life [you don’t have to believe it, however I do] and continues to keep me alive each day. He has a plan for me and my time in this world has not yet come to a conclusion. Whether that saving grace came from the prayer and petition of my family and friends or if God just willed it to be, I am grateful to God no matter what. How do I know that it was God, that comes from my mum and from God and from the miracle of the body [that he created]. What was wrong with me and the time it took for the doctors to figure out it was a HUGE problem, plain and simple, should have killed me. There is no way around it.
My mum tends to have these ‘feelings’ and ‘just knows’ stuff too, in the past it is usually about babies and pregnancy, she is not psychic but very intuitive I believe. Tuned into people, like an empath I suppose. She had this strong ‘feeling’ she could not explain and told me about it the day before I left on my honeymoon. She told me that she had this overwhelming feeling of grief like someone had died that she loves dearly, she could not explain it and was confused. She told me that it came on the day after my wedding and would not let up, and all she wanted to do was bawl her eyes out. She told me that she prayed to God to remove the feeling and if it meant someone was in danger to remove that. She also told me that the feeling resolved not long after I arrived at my honeymoon destination. The reality is that I very nearly met my death in the hours after leaving Sydney Airport travelling to our honeymoon [insert dramatic plot twist music here].
I have been diagnosed with a portal vein thrombosis, a blood clot to the Y shaped vein that connects the intestines, liver and spleen. Initially it was just the liver that was affected but now the spleen is too. This is a chronic condition and it is unknown when it started or what caused it but it could have had a very dire catastrophic conclusion if there were had been no supernatural intervention.
An overview for you – this is a lengthy, shortened version, but if I told you everything we’d be here all day. I have reduced it to the main points [and then took about half of that away too].
Not long after my second husband and I moved in together I started to experience major fatigue issues. I would do a minimal amount of exercise and it would leave me absolutely drained to the point of sleeping for a few hours, needless to say this is not your normal reaction to exercise stimuli. Despite that there was not much else wrong with me specifically but generally I found I was constantly sick with one thing or another, head aches, ear aches, back aches, stomach aches, body aches, cold sores. Sometimes all at once but there wasn’t a time when I wasn’t suffering from something. Which was not like me at all.
At this time I was planning my wedding. I stopped going to the gym and slowly my weight crept up. Despite monitoring my food intake/activeness I put on 7 kg in 2 months and did not know why. I was concerned but was too busy to focus on it. My sister was married a week before me, I was her bridesmaid, when I tried to put the dress on it was really tight [fit me perfectly 2 weeks prior]. I was immediately concerned I would not fit my wedding dress and tried it on, luckily it still fit but I could no longer wear anything under it [bra] and it would ride up a bit at the front – but it was okay. I prayed and prayed that I would not put any more weight on in that last week and luckily I didn’t. The weight gain was fluid retention, which is a side effect of my condition.
Four days after our wedding my husband and I board a flight to our honeymoon destination. This marks the point where my condition made itself known, something was very, very wrong. However it took over 2 months to find out what – that alone could have killed me.
The morning after touchdown at the honeymoon destination, I woke to find that I had developed severe muscle fatigue in the legs which caused debilitating pain and physical exhaustion. I found any kind of walking almost impossible. My legs would sting and burn with fatigue after as little as 5 minutes of walking.
Walking up any kind of incline or stair case created intense pain and exhaustion and I would have to sit and recover for quite a while. I was just exhausted all the time. The smallest amount of exertion would led me to sleep for hours. It was horrible. My husband had to do a lot of the exploring without me, not because I didn’t want to but because it would nearly kill me to do it [until we got the scooter and then he would buzz me around the place on that]. On top of that I had developed over night the biggest cold sore I had ever had in my life. It almost took up a quarter of my mouth. It looked like a massive injury. I only get cold sores when my body or immunity is under stress, my body was stressing out to the maximum keeping me alive. In hindsight I should have gone straight to the hospital and only God can be thanked that nothing serious happened to me.
Apparently my body has been and still acts like my liver is in advanced failure. The only thing is my liver is perfectly normal, sometimes the levels are high, but mostly normal. I have a lot of doctors scratching their heads; my body is a complexity of contradictions.
My theory is as follows: my condition is chronic so when I jumped on that plane, [I reckon the clot moved] my portal vein totally blocked thus cutting the circulation to my liver completely and there you go, on a silver platter you have a serious life threatening condition [you cannot live without your liver], a ticking time bomb if you will, one that took over 2 months to discover.
Luckily [??] for me however, because it was a chronic condition, my body had been building up a defense. This is the amazing mind blowing part, my body had grown new veins! They are called collateral veins, and through them, my body would get blood to my liver. The only problem was there wasn’t that many at that time, which put them under an immense amount of stress to cope with the full load of the portal veins duties. Hence the struggle to use my legs, the increase in fatigue after exercise AND the massive cold sore that could have doubled as a second head.
If it had not been for those collateral veins my husband would have woken up to a wife who had passed away in her sleep [or even sooner possibly within an hour of landing]. My mum would have found the cause of her foreboding feelings of grief, and my own premonition feelings that plagued my whole life would have come true.
The foreboding has left me now though, despite my life threatening condition [oddly enough]. My imagination is now unhindered by a morbid, lingering premonition.
By the grace of God alone I managed to stay alive but I was still clueless to the cause of my health concerns or to the seriousness of them.
I went to a doctor when I got back but she just instructed me to come back in the new year if symptoms persisted (6 weeks away); She ordered no blood tests, did no physical examination, asked no questions about my general health nor did she order imaging to check for DVT; considering the flight and the leg symptoms this was negligent really. Blindly and ignorantly I trusted her.
I started to develop a sharp pain in my upper right abdomen about 2 weeks later. After 3 days without let up I went to a different doctor. My new doctor immediately suspects gall stones and sends me for an ultra sound. The night before my ultra sound my bible study and I prayed that the radiologist be guided to the cause. The day of the ultra sound and the radiologist indicates that my gall bladder is hard to find but persists. A procedure that should have only taken 30 minutes had already taken 45 minutes and she couldn’t find the darned gall bladder [not unusual for me I later found out]. Suddenly, she goes quite and indicates that she has to get the doctor, he comes in, at this point I am petrified. He tells me that they have found a blood clot and need to do a CT scan immediately he needs to call my GP to arrange it and not to leave. My older sister is there with me and I was scared to death of what this meant. The CT confirms the diagnosis and report is sent to my GP. I later pick up the results and the GP directs me to go straight to hospital [do not pass go, do not get $200] and admit myself into emergency. This was 6/1/2012. The gastrologist and haematologist test me for so much I felt like a pin cushion. I had bruises from ‘bum-hole to breakfast’ as my mother would say; they tested for cancer, blood disorders, immune disorders and anything else they could think of but come up with nothing. No known cause for my condition. I am placed on Warfarin and was told that in 6 months I could come off.
I reviewed with the Gastrologist a number of times and after a few tests and imaging I was given the news that I would be on Warfarin indefinitely because the clot wasn’t reducing. I was devastated, my husband and I wanted to have a child, it now looked like there would a lot involved to have a child now. I asked him for more information about childbirth and this condition. He told me that it would be risky and referred me to another specialist for a review for this purpose and to see if he had any other recommendations about treatment ongoing. I had to have endoscopy to check for esophageal var-ices (small weak blood vessels travelling up to the oesophagus) but at the time he was pretty confident this was not an issue. Unfortunately though, in recovery he confirmed that he found a esophageal var-ice, bad news, this means an increased risk of internal bleeding.
I had to stop the Warfarin immediately until he could investigate further. I had an MRI but could not get back to see him until February 2013 – 2 months off Warfarin. More bad news, MRI revealed that the clot had grown considerably in that 2 month window and now blocked the the spleen too; the collateral veins had also started blocking. Apparently it would be extremely bad for the clot to reach the intestines [I didn’t ask why because ‘quite frankly my dear’ I didn’t want to know].
I had to go immediately back onto the Warfarin, I was a walking time bomb (of sorts – still am; this title will NEVER leave me).
Needless to say I was [am] scared. Driving cause me so much anxiety; there are soooooooo many people out there that are rules to themselves, driving slower than they should, faster than they should, refuse to use indicators, cut you off, breaking suddenly before indicating their intention, waiting to the last minute to break – I could go on – some are innocent errors or brain spasms; some are deliberate and unacceptable. So when I can, I choose not to drive, that way I can refuse to watch my life flash before my eyes every time someone takes my life in their hands. Luckily, my husband is the safest driver I know and I trust him unquestioningly.
My Gastrologist referred me to the liver clinic in RPA. The specialist did his review and examination, asked a million questions about my health from birth and concluded he agreed 100% with the current medical management and also advised that there is a huge risk me becoming pregnant and would be ‘very concerned’ if I was to do so. Devastated does not explain my feelings. I was glad that my husband came to that appointment with me, until then he had only got things 2nd hand from me. I was advised that I have a 5% mortality rate if I were to fall pregnant. Doesn’t sound like much but my GP assures me it is dangerously high. This means, of all the women in the world with the same condition as me [which is rare] 1 in 20 will die during pregnancy. There are also risks of internal bleeding, further clotting (heart/brain/lungs or anywhere), undersized baby, death of the baby; the list goes on. A friend unintentionally [??] made me feel guilty about not trying for a child implying it comes down to how much I want a baby. My GP urged me not to let anyone make me feel guilty for wanting to live and so did my husband. She confirmed that although pregnancy would not necessarily be a death sentence, death is a potential outcome for me and thus must be a serious consideration when making the decision. When I think about it, it would be selfish of me to have a baby, risking having a child who I may not be here to help raise who would always remember that I [potentially] died due to their birth, leaving my husband to raise a child on his own, and lets face it if I did survive my physical limitations would make it very difficult. So that decision was final – no longer up for discussion. No babies.
I hate the thought that I may be a burden. The reality is that I don’t always present sick and so people don’t always believe I am, at worst or at best, think I am exaggerating – which mostly I don’t care about. I am the kind of person that suffers in silence and usually without outward indications if I can help it – what is the point and I am NOT about sympathy [so please don’t feel sorry for me]. If I tell you about a symptom this usually means I have been putting up with it for at least a few hours or even a few days, and then I will just mention it, like “my tummy’s sore” but in fact I am in severe pain. Perspective: nothing but 5mg of morphine assisted in removing my everyday ‘tummy pain’ so it’s not a small matter. Stating I had a ‘sore tummy’ is a massive understatement but non-the-less it is what I say so I am forgiving if anyone did/does think I exaggerate.
It would be hard to live with someone who is sick all the time and when you think about it, I have been this way since day 4 of our marriage, it gets me down at times. I used to be so much more active, there are things that I can not do so well any more and I am painfully aware of that. My joints and muscles ache and using them at times just for the most mundane task can put me in pain for 3 days getting over it. Simple walking for more than a short distance is painful and the next day it will be like I am recovering from a massive work out in the gym. My husband is such a great guy, he does so much for me and around the house I appreciate it. I will put up with the pain of doing ‘stuff’ [and the pain that comes the following day] so that I can do some of it.
It can feel like, even to my ears [when I look at how I present] that I am making excuses all the time, although I am not. Some days I can do things and have no issues, but they are rare. Two symptoms that are a major cause for my incapacity and also the biggest inconvenience and hindrance are the constant oedema (fluid) in my lower limbs and my hands, and the extreme fatigue. I know these problems are not going anywhere any time soon so what can I do? nothing but shut up and live with it. So that is what I do, mostly.
What gets me down if I dwell on it too much is that this is my life here on in, unless God heals me – because the doctors cannot [just yet at least, who knows what future research will reveal].
The only thing that varies at this time, is the degree, the oedema, muscle fatigue, pain and physical exhaustion are there – constantly. I try to pretend that I am normal, that there is nothing wrong with me. That I am just like everyone else but the reality is I am not. I can pretend but I cannot fight reality, it catches up with me and then brings me down. If I try to say something about it or avoid certain activities [and the physical consequences] I feel like I am making an excuse; that eyes are rolled [not hubby but others]. I don’t want to complain about my situation at every ache and pain or walk around like an invalid, there is no point to that, but what do I do when it’s overwhelming? When I am struggling to manage? Or I just don’t want so much pain to have to deal with tomorrow? Should I continue to push myself, pretending nothing is wrong [so others don’t feel put out]? or open my mouth and talk about it even though they roll their eyes at me and refuse to accept what I say [making me a liar is easier than to admit a lack of empathy or ‘God forbid’ so they change their plans]?
Stick with me guys, I know this entry was a bit low on the energy spectrum but it gets better. This is the documentary of what I was experiencing on that day. Like I said I mostly only spoke to ‘MW’ when I was low and did not want to burden someone else with my ‘life of unchangeable issues’. Sharing can help us cope, but when you see the look in the eyes of the ones you love who want so much to help share your burden but cannot, and the pain that is for them; it is hard to continue to burden them; even when I needed to talk back then. Its just the process of acceptance that I am sure all chronic illness sufferers go through. I believe that writing things down, or talking about them can reduce their power over you. If you are feeling down or mentally nauseous about something, and verbally vomit it all over a page, when you finish you can feel so much better [just like if you are feeling physically nauseous, you almost always feel better after vomiting – yep, I went there!]. Well that is usually my experience anyway.
Spoiler – things get better for me; I promise!!
Until next time readers, have a fantastic week.