Now, at the time, we were living in a small, wine growing community and my referral was for a doctor in a town over the hill, a 90 minutes drive each way. I held onto hope that walking into this man's office was going to change my life. I should have held onto hope that it would change for the better but I hadn't yet found out that a lot of doctors are total douches.
His office rang and said that to be seen by the public hospital, we'd have to wait 16 weeks whereas, to see him privately on a Wednesday afternoon, we would only have to wait 4 or 5 weeks. Who wouldn't take that deal?
So, in that time, we put our daughter into full-time daycare and my days as a busy mother were quashed. The house was so silent and my ability do anything was completely stalled. I remember getting off the couch and crawling to the toilet. I could get on and off by myself at this stage, but you know, that very private 'wiping' stage was still beyond me. So I learned the art of shift and shake -- no paper required. No shame either.
We were going into winter and I wore just a long leopard print robe. Getting clothes on and off was too hard, too depressing. Matt's grandmother had given us a very large insulated container with a spout on the top for keeping drinks cold in the summer. We found that it kept water hot and we used that as a means of making tea. I slid the cup under the spout, hit the button and the hot water came out. I could then wait for the tea to cool and drink it. And because I couldn't hold the cups, I drank lukewarm tea from a straw.
I spent a lot of time on the couch watching daytime tv and listening to ZM online. I hated silence. I couldn't stand silence. To this day I need some form of noise. Being in a silent house takes me right back to those early days of being unable to move and crying for help for everything.
Because I couldn't eat, I drank a lot of juice. I had gotten into juicing when breastfeeding Soph and going gluten free. So we dug out the juicer and I drank all sorts of combos. Anything I read online that suggested even the slightest hint of help, I drank it.
Asians greens, silverbeet, carrots, beetroot, it didn't matter. The most offending was brussel sprouts and the least offending is Bok Choi. Cucumbers juiced are a little slice of sluggy hell. Just don't go there.
That's purple cabbage and gluten free cookies.
Like I said, I tried it all.
Slowly as I began to relearn movements and train myself in movements that hurt less, I became mobile and apparently learned a funky gait that I've since had to work on. I called and called that Dr's office. I begged, I cried, I did anything I could to get in. But no dice.
Finally the day came. Full of hope and awe we ventured over the hill and into the Dr's office. It was an office in an aged care facility, with houses for the elderly surrounding it. I guess lots of old people need Rheumatologists.
When he introduced himself, I felt ok about it all. He was fairly young, with a 2 year old son and he seemed interested in the case. He was concerned that my ANA was negative, but that's ok he said. Some people never develop a positive ANA. I did some basic physical tests for him and it was agony trying to touch this or that.
Then he sat down and started to eat his lunch during my appointment. He said that because they had 'squeezed' me in that this was his lunch hour. Now I felt bad for being there. He told me it was a case of a mixed connective tissue disease to him and that he didn't much care for the 'Whys' or causes. He just liked to jump into treatment.
I was to continue the steroid at 40mg and start on the Plaquinel. Should clear it all right up.
And that was that. My 15 minutes were done, please pay $120 and take this script and begin taking the drugs.
It was really depressing. That was it!? Imagine waiting 16 weeks for THAT!!
So we drove home, filled the script and I took my first doses of Plaquinel. And within a few hours the side effects kicked in. In short, Plaquinel is quite effective against Malaria. It's also quite effective as a laxative. I am a sensitive sort, I'll admit that. Drugs hit me hard. And my stomach is so sensitive from the drugs that I puke easily. But at this stage in my drug trailing, I was still a strong gut virgin.
I was puking from dawn to dusk. My butt hurt so much. I called the office and begged for advice. Finally I got a phone call. Oh, that does happen to some people. Just stop taking it and I'll call in a script for Methotrexate.
All I knew of MTX, from my time investigating fertility, was that it was used as a cancer drug and to kill off ectopic pregnancies. What on earth was he doing giving it to ME?!
No way, I said. Over my dead body. I began to research the side effects, the risk to future fertility. I told him I'd see if I could tolerate the Plaquinel a bit longer and if not, well, I'd cross that bridge.
In my head I just kept counting down. Ok, another day sick means I'm closer to the end of this. If it's a flare, it'll stop and my life will go back to normal. Any day. Any day. Come on, any day. People were telling me that a positive attitude, visualzing being well, etc was going to make it all better.
And it was naive. I held this hope that I was going to get better and when I got worse or violently ill from a drug reaction, I felt lost. Wasn't I supposed to be getting better? What the hell?
And if I had negative thoughts I was reigned in by well meaning friends. No one knew that what I needed most of all was just unbiased, non-judgemental, silent support. Someone to hug me, to hold me, to let me cry and scream. Holding all of that in poisoned my perception of life.
The pain was so intense at times and uncontrolled pain is akin, in my mind, to torture. Any movement, any sudden slip from total control meant uncontrolled pain for hours. Doctors, some doctors at least, are very quick to give pain relief. Others won't. My GP, thankfully, was quite good but started me very slowly. At first we tried normal Ibuprofen. Then we tried Voltaren. I quickly showed intolerant to it and had my first bowel bleed and a bad case of gastritis. The steroid, it seemed, was making my body so sensitive.
So we tried codeine with and without Tramadol and finally worked up to Oxycodone. I was bloated up like a walrus. I began developing shakes in my arms and speech was very difficult. We rang the Rheum and demanded an emergency appt due to the shakes and the uncontrolled pain.
It took about 10 days but we got there. Again, it was lunchtime, this time was a pie and a very grumpy, inconsiderate demeanour. He was upset that the Plaquinel wasn't working, that my inflammation markers were all normal despite the obvious swelling and pain. He didn't like the neediness and my 'demands' on him. I am, he explained, the only Rheum for 3 regions and I am a very busy man.
I felt guilty, ashamed but also scared. Terrified of the shaking, the inability to form words. He told me it was odd that these symptoms were starting now, very similar to that of Parkinsons or MS. Oh, he said, looking at my chart. You've got a case of Prednisone poisoning! Just drop down to 20mg. You won't be able to tolerate 40mg very long.
How simple for him, how insane for me. That's it?! This drug is controlling my life!
He asked me why I hadn't started the MTX. Because if I was taking it, I wouldn't be hurting now, and silly girl, you should be doing what I'm telling you. But, I told him, what about the risks to fertility etc. He told me I shouldn't be worried about the future when today was such a problem.
He told me it was very strange that none of my tests had yielded an answer and perhaps it wasn't Lupus after all. It was very much like RA with the swellings and the negative ANA. But my RF was negative as was my Lupus factor. Hrrrrrm, he said, eating his pie, crumbs all over my notes. Yes. RA. Start the MTX and see your GP for pain. And, by the way, arthritis shouldn't hurt all the time. If it is, you're just feeling too much.
We left angry. Hopeless. Upset. I cried most of the way home. Why was no one listening to me? Treating me like an actual human being!? Is this the only doctor we can actually see? What. The. Hell.
I saw my GP and explained my pain and my worries and he just shrugged at the inability to offer another Rheum. We could try Christchurch he said and he began digging through a book of referrals. No, I said, it's too far to travel and I can't afford it.
So I filled the MTX script and waited. Waited for a day when the pain was so intense I questioned my sanity and took photos of the drug. How could something so innocent looking have the potential to kill cancer and render one infertile?
So I swallowed my six tablets and waited.
I didn't actually have many side effects to the drug. I had a weird burning sensation at times but nothing more. I also didn't have any effects that it was working. It takes a few weeks everyone kept saying. So, I kept taking the drug. And waiting.
Being sick and on the diagnosis roller coaster is a giant case of hurry up and wait. You do your bit, all you can, and you wait. For other people, for drugs, for chemical reactions, for signs of life and hope.
And nothing.
The pain was intense and horrible. I remember taking a red marker and having Matt put an X everywhere on my body it hurt. I walked into my GPs office and showed him. He just put his head in his hands and said he didn't know. He had started training as a Rheumatologist but stopped because it was simply too hard. It was that scenario all over again. He told me he'd give me the highest dose of Oxycodone he could prescribe and that he'd do some reading.
When I saw him a few days later, he told me he thought Still's Disease was the answer. It often has completely normal blood panels and doesn't respond to modifying drugs. We were progressing into Spring and he warned me not to take the sun lightly. Being on MTX was going to change everything.
I'm normally cold all the time anyways so long sleeves didn't bother me. I got a big hat and put sunscreen on my hands and my face.
One Sunday after the farmer's market we joined our osteo friend and his wife and daughters for lunch at a lovely little restaurant in the Mudhouse. I began to feel very faint and sick to my stomach. We were very aware of the sun but wanted me to get some air. I was sitting at a picnic table under a tree in the shade. But I didn't feel any better.
When we got home and I peeled my top off, I noticed I was sunburnt all over my chest. Despite wearing a winter top, in the shade, I had been burnt. We saw a pharamcist as he was still open and he gasped and said it was at least a second degree burn.
He packed it with gauze and gave us some sesame seed oil that was being used on Bali burn victims to reduce their scarring. It was horrible. I had to go to my GP's nurse and get the darn thing repacked. The pain was horrible but at least I didn't focus on my joints as much.
Because the risk of infection was so high I had to drop the steroid from 20mg and try to cope. It healed beautifully, thanks to the sesame seed oil, and it hasn't left much of a scar. I stopped taking the MTX and went up North with my daughter to stay with my MIL and FIL. Life was simply too hard dealing with the stress of Matt's work and being sick and guilt and coming up to my due date.
A Very Bloated Jen
I spent my due date in bed crying. What had happened to me?
I went to bed one night a very tired, busy mum of one and look at me now? Bloated, sore, unable to move much and filled with so much anger, hostility and infinite sadness. What had I done? Why was I being punished? Why did G-d hate me so much?
My MIL was very supportive but I think it was a very foreign concept for her, all of it. I don't think anyone had anything they could say to reach me. I had gone too far into myself and I hated the world. And I didn't care who I hurt in the meantime. No one's pain could match mine, so why did it matter if what I did upset them briefly?
I bought some Christmas angels from Trade Aid after my last Rheum appointment. I held onto them in bed, clutching them. Trying desperately to form some sense out of the events of the previous few months.
What happened? Was it ever going to get better? Just what the hell was going on?
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