This is for the much appreciated supportive readers who are following my health challenges. Even though we are postponing Christmas, we wish everyone a wonderful and safe festive season with friends and family.
We’ve postponed Christmas because I’m just not up to it. I’m also not Radioactive Robyn, as it turns out.
Over the last week or so, the results have started to come in. You know how I mentioned two of the specialists said I was seeing too many doctors and we needed to reduce this? Yeah, well, I see all three specialists again in January, so I guess that reduction in numbers isn’t happening any time soon! I’m expecting Medicare to investigate me for medical over servicing any moment! The drugs are increasing too. Gone are the days I never even had Panadol in the house. Missing below is the Prednisolone I was on briefly as a trial and may yet be on again. Banned is the diclofenac that can be useful for the knees but is not on the gastroenterologist’s approved list for me. None of them are really serious shit like chemotherapy drugs, thankfully, but I have a feeling there are more to come.
My selection of medicines
First Dr Gastroenterologist. Basically not too bad. Hiatus hernia and diverticular disease confirmed, no real nasties just one polyp that puts me on the “review in twelve months” list. I am seeing him again at the end of January after the blood people do their thing – again. He’s also ordered some breath tests, something about hydrogen versus methane, for which there are no Medicare or health insurance rebates. $315, thank you very much.
Next stop was Dr Rheumatologist. Osteoarthritis and very early rheumatoid arthritis, but please see Dr Endocrinologist first and fix the thyroid. I’d asked for the thyroid scan report to be sent to Dr R as well, luckily. In his experience (and he has quite a bit) there is often a relationship between thyroid problems and auto-immune conditions. He didn’t explain the damn fifteen x-rays to me yet, or the nuclear bone scan. I’ll pin him down on that, next visit. He wants the thyroid dealt with first. Process of elimination, I suspect. Back to him in the first week of February, after more blood tests (of course).
Third and final stop was Dr Endocrinologist. The radioactive pill idea was not going to work because I have too many over active nodules. So I’m on a medication to suppress the over activity. I should feel better in about two weeks from the thyroid problems. The problem here is some people react to the drug and the side effects seems very like the symptoms the drugs are trying to cure! I’ve been to the (euphemism warning) bathroom ten times today. I’m was itchy all over on Monday but that seems to have settled. I have joint pain, but is that the arthritis or the thyroid or the medication? Your guess is as good as mine, all are possible. There is a small risk I could get some dangerous blood problem, but the risk is so small I’m not worried about it. Back to him in five weeks. And yes, more blood tests there too. If the cops pick me up for anything I’ll have needle track marks at this rate!
Sleeping is a problem and the local doctor gave me Serepax to help with the anxiety of the diagnostic process. What do I have? Will I be able to still work? How is this impacting the family? The brain never stops. If we include my gall bladder surgery, I have had five medical findings this year, four since the middle of October. Just to top it off I have suspected trochanteric bursitis which causes pain in my right thigh at night so I’m having an MRI of that and possibly a cortisone shot next week. I’d been putting that off since I was spending so much time having all the other tests, scans and doctors’ visits, but when it kept me awake most of Monday night I decided enough was enough and booked in for next week.
Dr R wants me to exercise, but the fatigue makes that hard. I did manage thirty laps of the pool on Sunday, a far cry from my 100 laps not so long ago!
You know when you have a cold and your nose gets red raw from the tissues so you need the aloe vera ones? Trust me on this, your nose isn’t the only part of your body that can suffer tissue trauma. Hence the packet in the top picture hidden under the drugs. Highly recommended, by the way. There is also a cream for that, but believe it or not, if you are not careful it can give you a headache! I kid you not.
The Nexium is to protect my digestive system from any of the other drugs that my tummy may not like. The brain fog is so bad I have to set alarms in my phone to take the important drugs (the vitamins and fish oil I think I remember). Even then, when I took the Nexium tonight I’m not 100% sure I hadn’t already taken one. The brain fog is crappy – if this Carbimazol fixes that I’ll be very happy!
Is it any wonder I bought myself two new dresses today?
Interesting learnings, too. Studies have shown up to 80% of patients who develop auto-immune condition can describe a major stressful event in their lives prior to developing the condition. Smoking is also implicated in combination with genetic predisposition for rheumatoid arthritis and yes I smoked. Studies show about 25% of patients with an auto-immune condition develop more than one. The incidence of auto-immune conditions in the population is increasing – the question is why? The health costs to the community are huge and auto-immune disease is one of the top 10 leading causes of death in female children and women in all age groups up to 64 years of age. Auto-immune conditions are more common in women than men. Why? Gender specific hormone factors? Read Rosemary’s story of her battle with rheumatoid arthritis on the Arthritis Victoria site.
My boss says to just write off 2014 and look to 2015. I agree. 2015 has to be better!
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That’s a scary lot of medications. Hope things sort out soon – though I know the auto-immune journey can often be a long and difficult row to hoe. Mixed metaphor but you know what I mean! Here’s to a better 2015!
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Thank you Matthew. Mixed metaphors are probably the most accurate, I think.
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Hi Robyn, you’ve just done the wisest thing you could do – cancel Christmas. You certainly don’t need the ‘joy’ of that on top of everything. I was thinking back to the beginning of my auto-immune disease and yes, I blame it on unrelieved stress. I had already thought about what you went through recently and it was no surprise.
There is a good book out on stress and what it does. If I remember right, it was Dr Hans Selye. I imagine a lot of people will begin their journey with stress and auto-immune disease in the next year or so for no other reason than what our government will do to them.
BTW, I’ve been on the chemo drug since 1986 and I’m lucky to tolerate a fairly large dose. It makes you feel nauseated or worse for about a day after you take it but then you get used to it and it settles down. I only get that occasionally now. My disease also began with many other things at the same time. It’s sort of a whole body collapse. Tonsilitis, conjunctivitis, Seborrheic keratosis on hands and feet plus I lost about 14 lbs in a week.
If I may offer some advice (expensive) start taking vitamins that counteract the side effects of the drugs you’re taking. If you can, get a reverse osmosis water filter to remove the fluoride from your drinking water (nodules). Forget the Serapax and get some Melatonin. It’s cheap in the US and very expensive here. I take 6mg before bed and sleep like a log. Melatonin is a naturally occurring hormone that we begin to lose as we age. Drugs also interfere with it. I get what I can’t get here at http://www.lef.org also a good source for scientific studies and health articles. If you do have rheumatoid (they didn’t warn me about this until I had it) take evasive action against heart and vessel disease now. And that doesn’t mean the discredited (no fat) diet. It means mostly cut out sugar and don’t eat anything that comes in a packet or a tin. Only use mono- unsaturated oil. Poly-unsaturated is very unstable and promotes cancer causing free-radicals. If it says ‘low fat’ leave it there. It means reading labels. Oh, yes, get that shot for your hip. Eliminate as much pain as you can. Pain is exhausting and very stressful. Try a tablespoon of coconut oil per day for the brain fog – it’s working for me and I was very skeptical. Oh, and laugh, laugh as much as you can. LOL!
Trudy
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Thanks Trudy! I’ve tried Melatonin in the past – it doesn’t work for me sadly. I wish it did. Years ago a naturopath made up a mixture for me containing some herbs, one of which was Melissa, but there were others, which worked for me wonderfully. But I’ve lost contact with her sadly.
I’m researching heaps and learning and will certainly try all your suggestions. I hate the benzo drug family, but I needed to control the anxiety. I’ll try the coconut oil as soon as the shops are open!
I feel better today than yesterday, so I think my body is adjusting to the Carbimazol. I’m not on a huge dose, so I’m hoping I’ll adjust quickly as I gather I’ll be on it for quite a while.
I’ll also check out that web site.
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Wow, what a journey you’re on. I can identify with the trochanteric bursitis. I have one on each side and it gives me hell at night, especially if I go to turn from one side to the other, feels like my thigh bone is going to snap in half. Dr said to exercise, yea as if a 9 km walk is not exercise. Now when I go walking I get stopped in my tracks after a while due to that. Sometimes even during swimming the pain is annoying.
My mother suffered with a hiatus hernia for years, then all of a sudden she didn’t complain about it anymore. Seems to have resolved itself after many, many years.
Hope your health issues are resolved in the coming year. You’re entitled to have a break from extra stresses like Xmas.
Hope your family spoils you in the meantime.
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Oh Carmen I read that rest is best for trochanteric bursitis. You might like to get a second medical opinion? Only bothers me when I am in bed luckily.
I think for me, as I am sure it is for other people with health challenges, it is the stress of the diagnostic process complicated by the fact of several conditions at once. The unknown, yet knowing medicine is not an exact science. Waiting for a treatment, yet knowing treatments will mean management, not cure.
Thank you for your support and understanding. 🙂
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From all we have seen you having to go through lately, you are an Aussie battler! You will get through this. 2014 was a terrible year for you, so here’s hoping 2015 will be an improvement on all things medical.
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Thanks Barb. I also wanted to share, especially at this time, so others who may be in similar situations can know they are not alone. Sometimes we can think we are the only ones, feeling isolated in a way. Sharing lets others know they are not alone in their individual predicament.
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