Dancing About Architecture

Here We Go Again…

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My friends on Plurk will know I have been having problems with my mobility and have been in quite a bit of pain recently.  I was diagnosed with Fibromyalgia in May 2007, but my rheumatologist at the time Dr W was just pathetic.  He kept telling me that I was in pain because I was depressed and offered no advice on how to manage my condition.  I stopped going to him in July 2007 and tried to deal with the fibro on my own.

A couple of months ago, I was ready to try going back to a rheumatologist to help properly manage my condition and I was referred to Dr M.  Today was my first session with her.  She was amazingly thorough, asking me heaps of questions about my symptoms and did a complete physical including some neurological tests.

However, the outcome of those tests is that we are back at the beginning to try to work out what is wrong with me - the “It might be lupus” phase as I like to call it.  All autoimmune diseases are back on the table along with muscular disorders closely followed by neurological disorders and because all the letters from old rheumatologist say I am depressed, mood disorders as well.  I had blood and urine tests done this afternoon and I have to go and have a chest x-ray for some strange reason. I am really not sure what a chest x-ray is supposed to show.  Depending on the results of those tests, certain other tests will follow.

In the meantime though I am on a multitude of drugs.  Turns out that Dr W gave me the wrong instructions for taking my current medication which helps regulate my sleep cycle.  He told me to take it at bedtime, so I took it before brushing my teeth and heading to bed.  I am supposed to take it 2 - 3 hours BEFORE my bedtime, which explains why when I wake up in the mornings I feel absolutely exhausted as the drug is still coursing through my body and telling my body I am supposed to be asleep.  Also I got a lecture from Dr M about not experimenting with my dosage of medication.  When is the last time you heard a doctor asking you why you didn’t try taking more tablets?  It was a very surreal moment having her tell me off for not taking more drugs and also for not trying out other drugs to see if they worked.

So now we play the waiting game.  If my blood and urine tests come back with some interesting results I will be called in, but if they are normal I need to wait until October to see her again.  I have also been referred to a physiotherapist who uses Feldenkrais to help me with my mobility and general movement.  Has anyone had anything to do with Feldenkrais?  It sounds kinda wishy-washy to me, but the physio works at the pain management centre so maybe there is something to it after all.

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Cyber Menstruation

I just saw this on All For Women and I had to blog about it.

Mon.thly is a site that tracks your period and keeps a record of when your period starts and how long your cycle is.  After adding a few months of data, the website will send you an email when your period is due.

This is my dream website, seriously.  Due to all my gynie issues, I have been asked by everyone I encounter when my last period started and how long my cycle is.  I honestly have no fucking idea.  I don’t keep track of it.  I am not getting pregnant or worried about getting pregnant nor am I on the Pill, so my period starts when it feels like it and my cycle chugs along at its own rate - and I don’t interfere in the process.  This relaxed attitude to ones menstruation cycle is unacceptable to the medical profession.  They demand I know the answers to these questions and look at me like I am the dumbest woman on the planet when I tell them I have no idea.  It is like, ‘you have a uterus and you don’t know when your last period was and how long your cycle is?  How do you live, woman?’

Now armed with this handy website, I will know.  My gynie team will be amazed at my in-depth knowledge of my menstruation cycle - or they will be if the consult room has internet access, caused I know I will never remember it.

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Dodging the Surgeon’s Knife

It was back, once again, to RPA to see my army of gynaecologists for their opinion on my test results and if I will need surgery. The answer to that question was no. Hurrah!!

I was found to have two problems; one a vaginal septum and two, a dermoid cyst.

Firstly the vaginal septum. This bastard blocks the left hand side of my vagina making a pap smear impossible. My gynaecologist couldn’t guarantee that surgery would make a pap smear possible and might result in some weird nerve damage. Therefore it was decided just to leave it alone. My pap smear will be performed in an unusual way by using one of these devices.

It is a cytology brush which looks like a mini bottle brush. Apparently women in remote locations use them to perform pap smears when they can’t get to a doctor. So if is off to the GP for me to have my bits brushed.

My fluid filled cyst has turned out to be a dermoid cyst. These cyst are full of potential tissues of the entire body - it is my own portable stem cell. They can contain hair, thyroid glands and most scarily teeth. My gynaecologist actually checked my kidney x-ray to see if he could see a tooth. Fortunately, my cyst does not have teeth, thank god. I would hate to have a tooth filled cyst sitting next to my ovary. What if it got hungry?

Anyway, it is nothing to be worried about, but I do need to monitor it in case it get bigger. My little cyst baby is 61mL, if it grows to 100mL, it has to be removed. I hope it never grows up.

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Tips For Living With Fibromyalgia

Jeanie asked for some tips for living with fibromyalgia for her sister-in-law who has just been diagnosed. Instead of putting it in the comments section or a private email, I thought I would write a post so that others who have just been diagnosed can also read it and maybe my tips can help them out.

Assemble a good medical team

Once diagnosed with fibromyalgia, it is important to assemble a good medical team to help you through the challenges you will face. Believe it or not but there are medical professionals and other healthcare workers that do not believe that fibro is a real disease. They believe because a test does not yet exist to definitively diagnose this condition, that it is all in the patient’s head and will repeatedly tell you things like “ you are in pain because you are depressed” and other stupid nonsense. Fire them and find yourself a doctor that has actually read a medical journal about fibro in the last 20 years. They may be hard to find but they are out there.

Join your local fibromyalgia or arthritis society

Your local fibromyalgia or arthritis society can provide a wealth of information about fibromyalgia as well as the possibility of meeting other people with fibro. In NSW, the NSW Arthritis Society also include people with fibromyalgia and have monthly meetings where professionals speak about various topics. They also provide hydrotherapy classes for people with arthritis and fibromyalgia which brings me to my next point.

Exercise

When I was first diagnosed with fibro, I hated all the books and websites out there that told me that exercise was an effective way to manage my fibro. I could barely walk to the bathroom let alone exercise. However, as time passed, I realised, with much horror, that they are actually correct. Exercise releases endorphins which is the body’s natural painkillers. The trick to exercising with fibro is to start off slow and slowly built up your levels of exercise. If you can only walk to the bathroom, then walk to the bathroom a couple of times a day and then slowly build that up or walking the length of the house, then the length of the block and so on.

Hydrotherapy classes, like those run by the Arthritis Society, are brilliant for getting you slowly exercising and moving. They are specifically designed for people with limited mobility. I attended my local arthritis hydrotherapy class and despite being the youngest in the class, including the instructor, by over 30 years, I really enjoyed it and it made a drastic improvement to my pain levels.

Rest

I know I have just been talking about exercise but rest is equally important. With fibro you need to pace yourself. You have to be able to forgive yourself for not being able to do as much as you used to do and learn to accept that fact without feeling guilty. It is a really tough thing to do and is something I still struggle with. Take things slowly and break tasks like cleaning and other physical work into tiny chunks. If you overdo it one day, you will spend the next two days unable to do anything – and it really isn’t worth it.

Join online support groups

When you are first diagnosed, online support groups are a great way to meet others with fibro, learn valuable information about this disease, share tips and most importantly realise that you are not alone. However, a word of warning, be careful about the support groups you join. Some are fantastic and really inspire their members to live life to its fullest, but with others the members of the group almost try to outdo each other with just how sick they are. This makes a really negative environment to be in and will not help you live with this condition. It is important to know that fibro affects people differently– some people are unable to work and need mobility aids, whilst others like me are able to hold down full-time jobs and only need mobility aids at certain times. Just because you can work and don’t need aids doesn’t mean you don’t have fibro and don’t need help in learning to cope with this condition.

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