I related my terrible sequence of events to the psychologist: miscarriage, death of father, adjusting back into 'normal' life after having travelled Australia, sibling fighting, mum's condition, the dizzy spell and my fears of stroke...... It all sounded like I had stacked up enough mental stresses to qualify as a mental patient. Then I described the extreme nature of my diarrhoea. Yes stress and anxiety can cause some diarrhoea but not to the extent that I was experiencing. This aspect of my health was definitely medical. So she sent me back to the doctor with the recommendation that I be tested for gut parasites.
This was getting close to Christmas time and the last thing I felt like was having the usual Christmas eating fest. As it turned out I was barely capable of it anyway. The only thing worse than having a terrible gut bug is the treatment for it. The doctor immediately tested bloods and stools and prescribed me the medication for giardia. I took the course, which amounted to just a couple of days medication. I felt awful at first as the antibiotics took effect, but I did notice a slight improvement in my anxiety levels.
Then the results of the stool tests came back showing that I did indeed have a nasty gut bug. Blastocystis Hominus. Normally a fairly benign bug but presumably in me it had gotten all out of proportion in my gut and was wreaking havoc. I was prescribed more antibiotics, a stronger dose and this time a ten day course, as this particular bug was a whole lot harder to kill.
I barely made it to the end of the course as the medication made me feel so sick. This little bugger of a parasite was determined to hang in there. Mentally, however I was starting to feel better. Still, though, I was not all together there. So I consulted doctor google and looked up if anyone else had battled this parasite. One site spoke about needing a cocktail of about 3 different antibiotics taken simultaneously to kill it. I got myself an appointment with a paediatrician who had a special interest in gut parasites and asked him for his treatment plan also. It consisted of a cocktail of 3 antibiotics, slightly different to the three that I had researched on the net. Armed with this information I went back to my doctor and asked for another prescription of antibiotics more resembling what I had researched. I was definitely feeling better, but still did not feel like I was completely on top of my bowels yet. So I started this new regime, another 10 day course that made me again feel incredibly sick. What a way to see in a new year, taking cocktails of antibiotics.
I had improved to a point, but there were still moments of having to manage anxiety, some days it felt like it took an enormous mental effort to stay on an even keel. The gut was ok, but not fantastic. 2008 saw me managing both gut and mental health trying various things like probiotics, garlic and Echinacea, and olive leaf extract to try and heal my gut from the bug or the sustained assault from the antibiotics. Also meditating, drinking camomile tea and yoga to try and heal my mind.
The photo shows me in 2008, thinner and seemly happy, but underneath I was desperately trying to hold it all together. Finally after sheer exhaustion from trying so hard everyday to feel normal I asked the doctor to again try and prescribe (a different) antidepressant for me. I just needed a break from myself. I'll blog about the antidepressant journey another time.
Apart from putting on a stack of weight the antidepressants smoothed out my anxiety, and other emotions. After Steve telling me one day that I never smile anymore, I decided to ask the doctor to let me come off the medication. As I slowly decreased the dose, my world brightened step by step, like the sun coming out from behind a cloud, I started to feel again. It was joyous. I was so focused on not being anxious anymore, I had forgotten what it was like to feel the other happier emotions. As they flooded back, the anxiety didn't! My gut was healed and my mind was healed, I was finally well again after a couple of years of utter struggle. Now I just had to deal with the weight gain caused by the antidepressants. That's a story in itself for another time. The photo opposite shows how fat I got while on antidepressants.
Just when I thought that I had my bowel problems sorted, I found myself referred for a colonoscopy after passing a bit of blood one morning. The colonoscopy came back clear, but did pick up on some polyps. More weird things growing in body. I wonder why I have a tendency to grow things that are surplus to requirements. I guess we all need a hobby. The problem with growing polyps is that then becomes another 'thing' that needs keeping an eye on.
Not long after I found myself back at an endocrinologist. My hair started to thin and fall out in clumps. I was worried that again I had invented some strange disease for myself, as if I didn't already have enough. Not being a fan of being on medication though I wasn't keen to take anything to treat it. The endocrinologist, talked a whole lot, listened very little, and sent me away with few solutions and a renewed diagnosis of PCOS. She declared that given my age, I was unlikely to fall pregnant and indeed if I did want another baby it would likely involve fertility treatment. Well that was a challenge that couldn't go unanswered and six months later, probably because I thought it was relatively safe from falling pregnant, I found myself with child. One good thing, though, the pregnancy fixed the problem of my thinning hair.
The final chapter in this story is that I fell pregnant with our fourth child, baby number five. I was 42, so if 32 was considered geriatric by the medical profession, I wondered how they felt about 42. This time my DVT history reared its ugly head again and demanded managing. After my eight week blood tests I started to feel a suspicious pain in my arm where they had drawn the blood. I thought that it felt like a blood clot. The pain grew as the clot grew. Then one night a few days later I developed a pain in my chest. Thinking that it might be a heart attack I called 000. I was taken to hospital and put into emergency for some tests. An ultrasound revealed that I had indeed developed a clot extending from elbow to shoulder. It was inconclusive about whether a clot had lodged in my lung aka pulmonary embolism. The heart attack had been ruled out. I had all the symptoms of a PE, the medical history, the smoking gun in the clot in my arm. Now it just needed confirming by way of tests. Unfortunately as the ultrasound was inconclusive I had to have a more extreme test, involving radiation and radioactive dyes. This totally freaked me out. Having already lost one baby, I knew the pain it caused and the last thing I wanted to do was risk this one. I was already so scared about making it into the safe second trimester without adding this complication.
We were convinced by our doctor that to do nothing was riskier than to do the test, so I duly submitted. This test came back inconclusive as well. I was not about to submit to anymore tests. For my mind with my symptoms and medical history I was 90% sure I had the beginnings of a PE. It just wasn't big enough to show up on their diagnostic tools. being hyper aware of my clotting tendency and keen to avoid excessive amounts of pain I tend to act early on these symptoms. Most people would present to hospital with further progressed disease than I would.
So no diagnosis, no medication. Medication was always going to be problematic anyway, given my allergic reaction to heparin, and being pregnant, warfarin was out of the question. Oh well, I had been here before. Self administered Aspirin. I took a few full doses over the ensuing days and reduced the pain in my chest. The clot in my arm however was harder to shift. It took on a life of its own and started to extend down to my wrist. The pain was intense. Then if that was not bad enough, the other arm started to clot up too. The clot in that one started at my forearm where the catheter had been put in during my hospital stay. There I was clotted in both arms from wrist to shoulder and in grave pain. I took a few doses of aspirin and gradually the pain and clots receded.
Again I was referred to a specialist who did not endorse my aspirin taking, but took an intellectual interest in my condition. He told me in all his practise he had never seen a homozygous factor V Lieden patient before. Yet statistically he reckoned that he should see us all the time, given our increased tendency to clot, compared to the regular population. He told me that he went to a conference with other haematologists and asked them too if they had ever seen a homozygous Factor V Leiden patient. All answered in the negative. He delightedly told them that he had one that he was treating now. How nice to be a medical oddity.
He started to speculate as to why we were so rare. One thought was that it doesn't really increase our rate of clotting as much as one would think. My experiences with clots would tend to discount that hypothesis. And just the fact that we exist should have us showing up at hospital with clots at least as often as heterozygous factor V patients. His second hypothesis was that maybe homozygous don't survive the womb. So there are actually not that many of us out there. How nice to be told that I shouldn't actually exist. I was feeling mightily healthy for someone who shouldn't have made it into this world....... Surely there must be others of us out there......
I survived the remainder of the pregnancy with no more clots. The birth was wonderful and we now have a gorgeous baby girl for our trouble. Ah for a life free of medical dilemmas.
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