PART XII: My Health

I need to interject this part here, as it's also part of my testimony. I need to point to all the different areas God worked in, to demonstrate how He takes care of every little thing. In His time. How He works all things together for a GOOD outcome in every individual Child of His's life. The story of my health isn't finished yet, so I'm just laying the groundwork here, for people to see where the eventual road lead. For them to understand, and have hope.

When I was 13 years old, I started to get severe stomach aches and cramping and pain. My parents ignored it. In those days, you had to either loose a foot, turn blue or die to be taken to a doctor. (Joking, but you get the point). The pains started only as short bouts monthly. Later weekly and eventually daily. Age 16, I fainted from the pain in class one day. I was out for several minutes, and thus my dad took me to the doctor, who said “low blood pressure” and “hormones”. Their answers ranged from hormones to blood pressure and stress in those days for anything they actually “did not know”. They could rarely admit “I don't know”.

Age 19 the tummy aches got so bad, my mom took me to a Gastro-enterologist, who diagnosed Spastic Colon or IBS. None of the meds he prescribed helped much. I found the only thing that truly did, was to have a hot water bottle on my tummy. So I basically just lived with the pain and controlled it best I could with heat. Everyone told me for IBS I had to “calm down”. That “stress” causes it. Yeah right. (Turned out, they were very very wrong. Just like I tried to tell them, but were never believed. <*eye roll*>)

Since my teenage years, I also struggled with anemia. It's something many endometrosis sufferers have to deal with, so nobody really took it very seriously. I were regularly given 3 or 6 months of iron supplementation. Sometimes even a whole year.

Then after Peanut's birth, things took a turn for the worst. The fainting and pain increased. Then, it started in my hands. I struggled to use my fingers, bend my knees or walk or I'd feel pain in my hip joints, ankles, etc.

Around the end of 2014, I started craving lettuce. It became so bad, that I ate between half a head and a full head every day. Then popcorn as well. I would eat a bowl of popcorn and a head of lettuce every day, plus at least 1 meal a day. A very very strange diet. So I knew something was terribly wrong, but I couldn't stop. I was later diagnosed with Pica by the internist, and told I was “lucky” that it was lettuce I crave. Most people in my position craved the dust around their car tires, ground, even rocks or tree bark or plants. Others craved ice.

When this continued for 6 months, and I started to experience severe weakness in my arms, unable to lift them above my head to hang washing without extreme pain and effort I went to the doctor. I was diagnosed with such severe anemia, that he sent me straight to the hospital. Not only were my iron low and stores depleted, but I had a hemoglobin level of 6. I was given a blood transfusion.

Only for the anemia to reappear later the year. This continued an up and down road of iron infusion (I since the first always adamantly refuse to get more blood, it made me feel too ill), just to be back to dangerously low levels within 6 months. So eventually, I was admitted into hospital again. I think it may have been in 2017, I can't remember for sure. But I believe it was shortly before my research started up again that year. So around beginning September 2017.

This time I spent a whole week in hospital. :-( It was hard. Lonely. Depressing. They ran many tests that week. I also had a bone marrow biopsy, that was horrific. They assumed I must have leukemia, but the results showed not so. I had severe malformation of red blood cells, and extremely limited numbers, but not cancer. They were puzzled. I had many blood tests. An iron absorption test. A colonoscopy and a gastroscopy. Everything (except the blood cell problem and some immune system markers) were normal.

They were flabbergasted. I had sonar’s and scans and medications and transfusion. They just couldn't find the problem. So I was referred to a rheumatologist, who said she think it may be rheumatoid arthritis. But she wasn't 100% sure as I didn't present with all the symptoms. I was put on medication which didn't help.

So then she referred me to a new Gastro-Enterologist with a long letter to explain how she believes it's an autoimmune disease, but not rheumatoid arthritis or Lupus, and he has to help the search. Around May 2018, I was given a little capsule containing a camera that takes pictures. Many pictures per second, and send it to a small computer strapped to the body, very similar to a holter EKG. It cost R20 000 for that one “pill”. That's about $1200. Fortunately, we had a medical aid (insurance) that paid most of it.

It was invaluable. It took thousands of pictures as it travelled down the throat, then into the stomach, and then through the small intestines down into the colon, and eventually get expelled. All the while sending the pictures it took to the little computer. From there, the doctor downloads it and look through it on his computer.

He didn't have to search. It was quite easy to see. My throat and stomach were red like always, from the GERD, but nothing too serious. The beginning of the small intestine was just a blur. Instead of 3 hours, the pill bypassed that area within 17 minutes. He said that's where many nutrients were taken up, which now explained my severe weight problem all my life. I got about a tenth from my food when it passed there than what other people got from theirs. And then, once the camera pill entered the long, middle part of the intestines, he saw the multitude of tiny, bleeding, inflamed sores.

After 30 years of suffering with stomach ache I was finally diagnosed. It was never IBS or Irritable bowel syndrome or stress related or any such stupid thing. I had Chrons. An autoimmune disease. Something damaged the intestine (probably during my early childhood years) and the body started to see it as an invader. Attacking the lining of the small intestine over and over and over again. All the time. Every day I had new wounds. And every day the old ones would just continuously bleed and ache.

So of course, this is not “normal” average Chrons. (Grrr.) Most people get the inflamed sores in their colon which is rather “easily” diagnosed through a colonoscopy, which is why I had so many of those in my life. My colon was always perfectly normal. But the small intestine were riddled with the sores. It was severe. It was bad. It was all over. From top to bottom. 6 meters of inflamed little sores. They couldn't operate. When there's a patch of it in the small intestines, they usually operate and cut that patch out. They literally cut a piece of the small intestine out, because 6m is more than enough to loose a few bits here and there. But mine literally had sores from the top all the way to the bottom. They couldn't take out the whole small bowel. Nobody could live without it completely. So there wasn't much they could do for me. I had answers, finally, but basically it meant nothing. Just understanding and acceptance. Which still was worth it all. To know why I had tummy ache for 30 years, was still valuable. To know that everyone who mocked me about it, or who said I should “calm down and stress less” were wrong, was invaluable. To know I wasn't lying (as I was accused of as a child) or imagining the pain (to gain sympathy or something).

I was put on steroids and anti-inflammatories and such meds for a year. And other meds there after for a few more years. It made no difference to either the pain, nor the continuous blood loss, causing the severe anemia. Every 6 months my HB still falls to about a 7, and I get a few packets of iron IV. I'm not allowed oral iron any more, as the doctor explained it's part of the problem. All the normal “solutions” actually exacerbated things for me.

I hate what this disease has done to me. To my family. With such anemia, I have scaled down a LOT since around 2015. As I just couldn't cope with all normal tasks of daily life any more. From about 2019 it got really, really bad. Chrons is an autoimmune disease, and about 30% is unlucky enough to also have the joints involved. Of course I'm one of those “lucky” third. I have stiffness and aches and pains in all my small and large joints, and the markers are in my blood. Which is why the rheumatologist at first thought it might be rheumatoid arthritis. So it's basically Chrons with a side of rheumatoid arthritis thrown in. And no medication that helps, except ibuprofen, which I do take at times, but refuse to as a daily medication. Recently the joints in my neck has become involved, which is really really awful, as it causes pain to the adjacent nerves which in turn causes migraine-like headaches. :-( I knew this would be a slow decline disease, but I hoped it would only truly decline once I'm a little older and my “baby” is out of school at least. And I never realised how hard it can be to just accept a new symptom you have to “live with”. Just add another one, why not? What does it matter when you have daily tummy ache, pain in the hands and hips, to add a daily headache as well?! :-( At least the research I then got into, kept my mind busy, and did not need a healthy body really. I could just sit or relax somewhere, while doing my studying.

I don't know who caught onto the date of the year in which I was diagnosed. Again. The year 2018. So right before my research started in Sep 2017, I was in hospital. And this lead to eventually being diagnosed around May 2018. One day, this will turn out to be extremely significant dates, but suffice it to say that 2018 was also the year Boeboe was being bullied, Peanut was unhappy, Monkeyman's tiredness worsened, and end of that year, I also lost my job, and started homeschooling them all. 2018. Such a significant year. It's truly impossible not to see God's Hand in all of it.

Continuing in the next part here.