jmgoyder

wings and things

Oct 20

I am so cool!

by jmgoyder

I feel the heat terribly and, as some of my friends may remember, a couple of summers ago, I developed a condition called “pompholyx“.

(Warning: if you click on the above link you might be grossed out by the pictures, just as I was by the condition).

Anyway, since one of the triggers is excessive perspiration, which I vividly remember my dad having and now it’s obviously my turn, I made a big decision. Air conditioning!

I pretty much live in my writing room, which used to be Gar’s bedroom (Anthony’s mother). Anyway, her 1970s air conditioner died last year, so last week I made the call and the aircon. guys and the electrician installed it this morning. It’s not a particularly hot day (only in the mid-20s C), but as I waved my saviours goodbye, I was already dripping, despite wearing a sweatband.

And now? Ahhh, the bliss of being so cool and the comfort of knowing that when the temperature hits 40 degrees (any time soon as summer approaches), I will have a safe haven! Okay so, in the big scheme of things, pompholyx may not seem like such a serious condition but it drove me quite mad for months a couple of years ago.

I was reminding our doctor the other day and he immediately looked at my hands where, during a funny little heatwave last week, the blisters had begun to appear.

Me: You can’t see them now – I scratched them off and it wasn’t that bad.

Doctor: Mmmmm.

Me: But I can feel them coming back – the blisters. So I think I might need botox to stop me sweating? I read about that possibility.

Doctor: No. I’ll order some blood tests; it could be hormonal.

Me: Yes, of course, but I don’t think it’s just menopausalish because I perspire a hell of a lot more than any of my equally menopausal friends!

Doctor: Mmmmm.

Me: And remember how we discussed cranio-facial hyper-hydrosis, or whatever you call it, last year? That’s me! It’s just my face, head and hands – the rest of me sweats normally.

Doctor: Mmmmm.

Okay so the doctor doesn’t do the mmmmmm thing loudly but it’s definitely a component of our conversations, with a chuckle here and there. I much prefer the mmmmm.

Anyway, as the young aircon. guys were leaving, I apologised for the peacock noise (it’s spring, so they are yaaaaawking constantly). One of the guys said ‘They are so cool!’

I agree and here are a couple of shots of Prince minus his back view!
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IMG_4899

As this beautiful white peacock does his twirling, fanning, wonderful dance, his feathers muscle their way into the breeze and sing:

I am so cool!

Animal Australia Birds blogging Embarrassing moments Family Happiness Humour joy Western Australia Wings

49 Comments »
Jan 20

No sweat!

by jmgoyder

In order for this post to make sense I need to remind people that last summer I developed a condition called ‘pompholyx’. It initially announced itself on the sides of each of my fingers in the form of tiny blisters that, due to their itchiness, I scratched, so for weeks, then months, I battled with blistered and/or scabbed hands (and, oh yeah, my left foot).

It nearly drove me mad and none of the various cortisone or anti-fungal creams worked very well. I researched my condition and found lots of gross photos and horror stories of frustration posted by other sufferers, all of which I showed my doctor. One common denominator, in terms of cause, was excessive perspiration: hyperhidrosis.

During the Australian summer, temperatures often reach/exceed 40 degrees C which means that for several months of the year people tend to look rather moist, including me. Then, last summer, my perspiration went into overdrive and my hands, head and face became rivers of volcanic overflow so much so that, if I shook my head the way a dog does everyone near me would be sweat-splattered. The worst thing, though, was my blistery hands; the little blisters would become huge blisters and, yeah, they leaked too. I felt as if I had been catapulted into some sort of science-fiction parallel universe where the sweaty people were excluded. In other words it is a very embarrassing condition.

When winter arrived (autumn is almost unnoticeable here) the relief was enormous for me. As the rain poured and poured, I stopped pouring and my hands nearly healed. But then (a couple of months ago) summer came back and so did the hyperhidrosis and pompholyx.

Interestingly, this second bout has seen a worsening of the HH but a diminishing of the PX. But I went to my doctor regarding both and he is going to research how we can stop this embarrassing, excessive perspiration. Good.

I then went to a podiatrist who looked at my left foot (the sores resemble burns) and she recommended an over-the-counter antiperspirant called ‘SweatStop’. Well, I couldn’t find that exact brand but I did find a few products containing the active ingredient aluminium chlorohydrate so I bought them.

Well, it WORKS! Once applied to the affected areas, it stops the sweat glands somehow. It’s a bit uncomfortable and has made my previously sweaty hair dry and brittle and my hands dry and scaly but it’s a hell of a lot better than dripping my way into every single day.

The most hilarious thing about this is that Anthony’s Parkinsonism has affected his internal thermostat so severely that he is ALWAYS freezing, even in the middle of summer! The first thing I do when I visit him is to turn the air conditioner off, put a jacket on him and then a rug on his knees, by which time I would ordinarily be oceanic with perspiration. Now I’m just a little bit drippy!

No sweat!

blogging Embarrassing moments Family Friendship Humour Parkinson's disease

26 Comments »
Mar 29

Cooler weather, finally!

by jmgoyder

As you can see from the pictures below it has been very very dry here but finally today it rained properly. Ahhhh! The best thing about this for me is that my nearly healed pompholyx condition will hopefully not come back. It is definitely much better now that it isn’t so hot.

Pearl and Woodroffe searching futilely for insects in the dry grass:
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Michael Jackson wishing the pond were fuller:
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A forlorn parrot on a dead palm branch:
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Freckle and MJ waiting for rain (or bread!)
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One of our many crows in a dying wattle tree:
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I did a whole lot of reading today (once again) about pompholyx, and was alarmed at various people’s stories. Some people had suffered repeated outbreaks for over 20 years! One man had tried to kill himself. Another had had to quit his job because it entailed the handling of chemicals. One woman was unable to change her baby’s nappies due to the pain. I read story after story after story and it became very clear to me that there is very little known about the disease, there is apparently no cure, despite many remedies, and I have now compiled a list of vitamins and creams and potions that I will buy tomorrow. My dermatology appointment isn’t for another week and a half so in the meantime I have taken bits of advice from all I have read and will endeavor to avoid all of the possible triggers: water, soap, coffee, cleaning products, dairy, wheat, dust, tea, heat, stress, alcohol, wool, and anxiety.

I feel very positive – and cool – and a bit dirty!

Animal Grief Happiness Wings

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Mar 23

Unblissed

by jmgoyder

I have now tried every ointment, drug, vitamin, doctor, prayer etc. to no avail, so this week I will see a dermatologist for the first time. In a state of unblissedness today (when I woke up to see my hands still peeling and feeling sore), I solicited the help of my mother and Ming to visit Anthony so that I could do some serious research into what has become a chronic condition for me – pompholyx.

There is nothing like an unexpected disease to increase one’s vocabulary, research abilities, and empathy. One thing for sure is that I am a hell of a lot more knowledgeable tonight than I was this morning – and actually very reassured that it is not just me.

You see, the desquamation (peeling) of my hands is apparently the last phase of the pompholyx cycle, and the liquenification (bloody scabs caused by victim scratching), is also part of the last phase. Which means I am in the last phase for the third time.

How on earth do people with chronic illnesses, chronic pain, and chronic grief, continue on into every newly painful day?

Family Friendship Uncategorized

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Mar 20

“I have accepted my Parkinson’s.”

by jmgoyder

Today I met one of the Anglican priests from my mother’s church (well, it’s my church too but I hardly ever go), because I had asked her to pray for me and my pompholyx and for Ants too. She is a beautiful person about my age who came out to the farm a few days after Ming’s car accident and prayed for us and for the whole family, and her name is Sarah.

We met in the parking lot of the nursing home at 1.30pm which was, coincidentally, the same time my mother was planning to meet me to visit Ants. I would have gone into the nursing home with Sarah but unfortunately, after showing her my hands, I burst into tears so had to ring my ma and say Sarah and I would do the praying thing outside and come into the nursing home presently.

So Sarah and I found a seat outside and she prayed and anointed my hands and blessed me while my nose dribbled as I stopped crying. Neither of us had a tissue so I had to wipe my nose on my shirt before we joined my ma and Ants.

They were sitting outside in a little garden area and, after the introductions and greetings, not knowing how much time Sarah had, I got straight to the point.

Me: “Ants, remember how Sister R. used to come over and anoint you with her holy oil?” (Sister R. is a Catholic nun who has been our friend for decades and, despite Anthony not being the least bit religiously inclined, he used to love this).

Ants: “Yes.”

Me: “Well Sarah can do that now.”

Sarah: “Do you want me to, Anthony?”

Anthony: “Mmmm.”

Me: “Yes.”

So Sarah prayed for Ants and anointed him and then we all sat back and had a conversation.

We talked a lot about life, the accident, our kids (Sarah has a daughter nearly the same age as Ming), my mother’s unfortunate collision with a glass door the other day, and my hands. Then Sarah asked Anthony various questions – about his childhood, his siblings, Ming and so on – that elicited answers. I admired her skill at drawing him out because his conversational skills are now very hesitant. Sarah was also very good at waiting silently for his response – fantastic!

Then, in answer to a question about something entirely different, Ants suddenly said this: “I have accepted my Parkinson’s and I still have the power to swear at people I don’t like.”

Oh how much I love this man!

Thank you, Anthony.
Thank you, Mother.
Thank you, Sarah.
Thank you, God (but only if you heal my hands and foot).

On the other hand, maybe I will have to accept my Pompholyx, just as Anthony has accepted his Parkinson’s disease.

Family Friendship Grief Happiness LOVE STORY Parkinson's disease

62 Comments »
Mar 19

An apology to my hands

by jmgoyder

I have always taken my hands for granted. Not only that, I didn’t like them and I often said so to my friends. I hated my short, stubby fingers, peeling fingernails, freckle-wrinkles. I even did the fake-fingernail thing for awhile, the expensive hand moisturizer-guaranteed-to-remove-freckles-and-age-spots thing. Was I crazy?

It is now two months since this weird disease attacked my hands and now my left foot. I have been back and forth to doctors and have been on steroids, antibiotics and, as of yesterday, anti-fungal and anti-histamine stuff. Pompholyx: interesting word and no definite cure.

How was I to know that a seemingly simple little finger-blister thing, that occurred two months ago, would turn into a recurring nightmare over and over and over again? I can’t do the dishes, open a window or anything else that requires my hands (thank God I can still type). My hands and one foot are bleeding, scabby, blistering, itchy and, therefore, useless!

So please, hands, I’m sorry if I insulted you. In retrospect, I realize you were beautiful, wonderful hands, so please come back so we can be a team again. I never knew how much I needed you until now.

blogging Family Friendship Grief Happiness

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Feb 27

The advantages of having pompholyx

by jmgoyder

Sorry but I am a bit obsessed with my condition. This time I have decided to give it a positive spin.

The advantages of having pompholyx:

1. You cannot go anywhere near detergents of any type, so you are not allowed to wash dishes, clean the bathroom or do the laundry, which means someone else has to do all of these things for you. (Thank you, Ming, oh and don’t forget to vacuum the house).

2. If you have freckly hands, and you don’t like your freckly hands, you will love how, once the skin peels off, so will the freckles.

3. Exercise is not a good idea if you have pompholyx on your feet so, even if you weren’t madly exercising every day, now you don’t have to feel guilty about that.

4. It is a conversation starter. People tend to find it quite entertaining to hear about your pompholyx, and fascinated by your suppurating sores. It is, however, best to keep these show-and-tell conversations to less than 10 minutes I’ve discovered.

5. It’s good assertiveness training. For example, when people tell you to stop scratching at your hands, you can say (loudly, if you wish), “I will scratch at my hands if I want to scratch at my hands!” I have had to say this to Anthony, Ming and friends on several occasions.

6. You have learned a new word – pompholyx (which derives from the Greek for ‘bubble’ I think).

7. If someone you only vaguely know sees you at the post office and wants to give you one of those spontaneous hugs that you are not in the mood for, you can throw your hands up and say “Don’t touch me – I’m diseased – see!”

8. It’s also a good way of frightening small children who are behaving brattishly, although I haven’t tried this yet.

9. Doctors are extremely impressed with your extensive knowledge of a condition they have never heard of and they look at your hands and feet with the glee of a new discovery. This gives you the brief glow of what it must be like to be on the red carpet.

10. You discover that you have a tonne more of empathy for all who are suffering any kind of pain. This is the best advantage by far.

Ming did the washing, vacuumed the house, did the grocery shopping and saw Anthony this morning. This afternoon he has gone back to see Ants, go to a movie and then he is bringing pizza home. Wonderboy!

Family Friendship Grief Happiness LOVE STORY Parkinson's disease

53 Comments »
Feb 26

When the carer gets sick

by jmgoyder

It is now a few weeks since I was first afflicted with pompholyx on my hands and I have now seen three doctors (well, four, if I count Dr Google) and I now have all the antibiotics, steroids and ointments I should need to get rid of it. The blisters on my hands have now been replaced with peeling, bleeding skin and I am finding it painful to do everyday, normal things like turning a tap on and off, prepare a meal and even holding the steering wheel of the car hurts. I’ve read heaps of articles about pompholyx and seen some gruesome pictures that look just like my own hands, so I feel quite knowledgeable about the condition now.

A few days ago I noticed a few blisters on my left foot too but, like an idiot, I just kept hoping they’d miraculously go away, but this morning I woke up to two very swollen feet, with all of the toes on one foot covered in sores and one on the other foot too. (I think my feet must have been scratching each other in my sleep!) The left foot was so painful that when I jumped out of bed to take a closer look, I got a shock when I could hardly walk.

My first thought was how could I take Anthony out for afternoon today? That was my plan and I had told him yesterday when I had two normal feet. As usual my incredible mother came to the rescue and visited him and I spoke to him twice on the phone, the first time quite tearfully but the second time (my mother rang me from his room at the nursing home) more cheerfully.

There are a lot of mixed opinions about pompholyx but one thing I have found in almost everything I have read about it so far is that it can be caused by excessive perspiration. This makes a lot of sense to me because, despite the fact that I have always had a problem with this during our Australian summers, it has never been as bad as this year. In fact, a few weeks ago, I joked with a friend that I might have to get botox to stop it (I had read about this treatment and this was just before the pompholyx hit me). It turns out that this may well be a necessity for me if the pompholyx doesn’t go away with all the other stuff I’m taking for it. I could get my frown lines done too – haha!

On the scale of diseases, this is certainly minor and I know many people and friends who are battling much more severe health challenges, diseases, chronic pain and, yes, grief. So I feel a bit embarrassed to be so upset about what has suddenly happened to my hands and feet, but the main reason I am so upset is because it is obviously going to stop me from seeing Ants for awhile.

Ming, who did a whole bunch of errands and other jobs for me today, said (during one of the Home and Away commercial breaks), “I’ll do anything you want me to, Mum – just give me a list!” Then we had a conversation about stress:

Ming: You must be really stressed – look at your foot!
Me: I am now twice as stressed as I was before you said I must be really stressed so shut up!
Ming: Why can’t you just have fun, Mum?
Me: I can’t really have fun with this thing with my hands and feet.
Ming: I could take you out for lunch, to the movies even – popcorn? Pizza? I’ll do anything!
Me: Could you do a load of washing, vacuum the house, wash the dishes, do the groceries, visit Dad and bring me some panadol tomorrow?
Ming: Oh – okay. That’s a lot of jobs and you haven’t given me much warning.
Me: It’s called initiative, Ming.
Ming: No, no, no – you know I hate that word!
Me: Well guess what – I hate the word stress!

The hardest thing about getting any sort of sick when you are caring for a loved one with a proper disease (Anthony) and another one who has just had a second lot of spinal surgery (Ming) and all the other people who you care for, is the feeling of utter helplessness that you can’t help because you are sick too. For me it is, hopefully, just a temporary sick but it may go on and on (pompholyx tends to do that).

Apart from the spasmodic asthma attacks that began four years ago, when I was still working at the university, Ming was still at school, and Anthony’s health was beginning to deteriorate, this is the worst diseasy thing that has happened to me. I’m a bit scared I guess because I’m the carer – I can’t get sick! I am needed!

To those bloggers and friends and relatives who know this feeling, I salute you for your courage and honesty in talking so openly about these things. My empathy has grown a thousand-fold because of this pompholyx thing.

blogging Family Friendship Parkinson's disease

70 Comments »
Feb 21

Adjournment

by jmgoyder

Ming and I were in court again today but, due to a glitch in communication between the police and our lawyer, his case has once again been adjourned – for another three weeks.

I thought today was the day Ming would finally plead guilty so I was a bit agitated as we waited in the waiting room with a fascinating assortment of other criminals. Ming was dressed in a white, collared shirt and black pants (not jeans) but, on the way into town this morning, the button on his pants popped off so, not being the type to have a sewing kit in the car, I just told him to make sure the zip was up when he faced the magistrate but not to fiddle with it too much because that might look a bit odd. This was made a bit difficult by the fact that his shirt had to be tucked in at our lawyer’s advice.

It was weird to be sitting and waiting, more worried about Ming’s pants than the outcome, and my recent hand condition (the pompholyx I wrote about awhile back, which has come back again), started to erupt in front of my eyes. It was like a scene from a science-fiction movie!

All of the little blisters on my hands started to join each other until, one after another, big blisters formed – between my fingers, on the palms of my hands and on my wrists. Okay – gross-out alert here – then, as I rubbed my itchy hands together nervously, all of the blisters started to burst and leak, then re-form, again and again. Ming was so disgusted and concerned by my leaking hands that he, too, lost focus on the court case. This was our conversation before the hearing:

Ming: Will you stop rubbing your hands, Mum!
Me: Look at this blister! OMG it just appeared, Ming!
Ming: Don’t touch it, Mum. Oh please – I am going to vomit!
Me: Your zip is down again.
Ming: What? Oh, okay, don’t worry, I will pull it up again when I stand up.
Me: There’s the lawyer Ming!
Ming: Don’t shake his hand, Mum, please!
Me: Don’t show him your zip, Ming, please!

Lawyer: Hello, you two.
Ming: Hello (stands up awkwardly to shake lawyer’s hand whilst surreptitiously pulling up his zip).
Me: Hello (sitting down with my hands in my pockets but with a big grin on my face to make up for not shaking his hand).
Lawyer: It could be another adjournment.

He was right!

[Note: I am taking off tonight to spend time with friends at a chalet nearby so will catch up with other people’s blogs on Monday – in meantime have a great weekend!]

Family Friendship Grief Happiness

63 Comments »
Jan 19

Itchy hands

by jmgoyder

For a couple of days now my hands have been painfully itchy (apparently there is a myth that this means I am coming into some unexpected money – ha!)

I noticed that on the sides of each of my fingers there are several miniature blisters so I thought I’d google the condition and here is what I found:

http://www.pompholyx.co.uk/your_experiences.html

Yes, it would seem that I have pompholyx which of course I have never heard of before. It’s a form of eczema apparently, and the causes include everything from humidity to stress (both of which fit my situation). I’m a little alarmed to find that it may get worse but I’m also relieved that it may simply go away of its own accord. As diseases go, it certainly isn’t serious, but the itchiness is driving me slightly crazy because I want to scratch my hands to bits.

Changing the subject: I wrote a post about Ming yesterday but I trashed it soon after because it seemed a bit disloyal to a son who is, after all, only 10% evil haha! But I realize it will already have been seen by some so, just to reassure you, he and I are once again on the same page, and my new nickname for him is “90%”.

Another update: even though I briefly sighted a couple of the peahens the other day, I haven’t seen them again and five are still missing. Nesting season is well and truly over so I think I will have to assume that they have either flown away (to get away from the peacocks’ attention), or have been killed by foxes. I am hoping it’s the former but I will never know. My peacock-knowledgeable friend, Mike, came over to see us yesterday because Anthony was home for the day and I asked him if the males would be okay without their ‘wives’ and he reassured me that they would, but it is still sad to have lost the girls. I guess, you never know, they might come back. That’s the risk with free-range but I never wanted to pen them in.

I’m off soon to go into the nursing home for the afternoon. It is only one street away from the beach so much cooler than here on the farm. Pompholyx is not contagious so that’s okay; I just hope he doesn’t notice that I have taken my wedding and engagement rings off because there were a couple of blisters underneath them. My ring finger feels really naked as, except to clean the rings, I have never taken them off.

Here are some photos of the peahens (much more pleasant than a photo of my blistered hands):

Queenie
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Animal blogging Family Friendship Grief Happiness LOVE STORY Parkinson's disease Wings

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