Yup that’s right, I said meh, about Mother’s Day! Go read all about it over here…
Hidradenitis Suppurativa
**TMI warning, you have been warned!
After 17 years of suffering, I finally have a name for what ails me.
In some ancient and even some modern cultures, giving something a name or discovering that things true name gives you power over it. In my case I better be Superwoman!
Some facts:
- Hidradenitis Suppurativa (HS) is a skin disease.
- It is not contagious.
- There are three stages to the disease, I am in the 2nd stage.
- It has been linked to androgen dysfunction which is also a cause of PCOS.
- Cysts can be as small as a pea or as big as a base ball, thankfully I have only every experience the smaller range of cysts.
- It is often called an ‘orphan illness’, due to the very little research being conducted.
- Treatments are varied and I have tried almost all of them with little to no success
Also, I have been hospitalised twice due to complications.
Once to have a hair follicle removed from my groin that they suspected was causing the cysts, it didnt work, all it did was leave me with a scar and the site is still prone to cysts.
The second time was when a cyst developed on my lower lip, I looked as if I had been stung by a mutant wasp. It was so swollen and sore that I could barely talk, I couldn’t eat or brush my teeth and the pain was so great I was chugging schedule 6 painkillers like smarties. Eventually I was admitted for two days for IV medication.
Over the last 17 years I have suffered in varying degrees from painful cysts on almost a monthly basis.
Over the last 17 years those are the only two times this disease has beaten me.
I am not ashamed to go out in public with red and swollen bumps on my face, I walk with my head held high and ignore the occasional points and whispers, I accept with grace and dignity when a shop owner gifts me with a medicinal soap because “Shame dear, that looks awful.” I do not do bodily harm to people who try touch my face while saying things like “That looks very sore. Is it?”
I wake up and put on loose fitting underwear and pants so as not to irritate the sensitive cysts in my groin, I go to work and I sit with my legs slightly open under my desk so I don’t put even more pressure on the area. I try not to walk like a cowboy unless I absolutely have to.
I try my damnedest not to let this disease beat me!
It may win another round though. We have a family photo shoot scheduled for next weekend with Jenty. I have a huge, angry, nasty looking cyst next to my nose. Im not sure that any editing software has the capability of making it ‘disappear’ not to mention the fact that as much as I ignore them, cysts on the face don’t lend themselves to making me feel pretty.
I’m really hoping that I beat it this time, that the medicinal soap I was gifted does the trick and that I look halfway human before next weekend.
I hope that having named my nemesis I have positive power over it!
My very first blog award :)
Wow, I am blown away. Yesterday I was going through my reader when I saw that Wenchy had given me a Beautiful Blogger award. My very first award ever! Thank you dear Wenchy.
So, there are rules that go along with this award. The rules are that I have to tell you 7 interesting things about myself and then pass it along to 7 other beautiful bloggers.
Here goes:
- I hate the feel of wet hair, especially my own and especially of it is no longer attached to my head. It makes me gag and has been known to make me vom on occasion.
- I love to sing. I sing badly. Sorry for you!
- I have been drinking Bells whiskey since before I can remember. My grandfather used to put a splash in my bottle when I was a baby. I slept really really well.
- I enjoy a good cigar on occasion.
- I love losing myself in a romance novel, be it contemporary, paranormal, time-travel, historical, futuristic, main stream or self published. Its the end that I love the most, the absolute triumph of love that I enjoy.
- I am the least romantic person ever! Despite the point above. I don’t remember special dates, I always leave present buying to the last minute, I have even forgotten to wish Paul a happy anniversary once. I pull faces and make gagging noises when a couple on TV get lovey dovey (if its not a romantic movie – and sometimes even then).
- I wanted to play the harp as a child but in order to do that I had to play piano and I hated every minute of it. I don’t play the harp and that makes me sad.
And the 7 bloggers I’m passing the award onto are:
Exmi – cause she is an amazing, funny, beautiful mama.
Boobahsmom – I’ve only met you face to face once but you left such an impression and I love your laugh.
Bananaramagirl – your honesty and heartfelt words touch me.
Caz – I’ve only just ‘met’ you online but your strength is inspiring to me!
Jenty – you manage to find beauty everyday through your lens and for that I am grateful.
MeeA – 4 beautiful kids, need I say more.
Tertia – She is so inspiring in her honesty and in her ability to share not only good things but the difficult things too.
testing WP for BB
Just downloaded the BB app. Seeing how it all works 🙂
Think I quite like it.
A rather irritating symptom
Common symptoms of PCOS include:
- Irregular, few or absent menstrual periods
- Infertility resulting from a lack of ovulation
- Hirsutism
- Hyperandrogenism resulting in excessive acne and caused by excessive production and/or secretion of androgens
I suffer from all the above in varying degrees.
1. Thank Gd for Clomid as that keeps my periods fairly regular. 2. Infertility, DUH! 3. I am not too hairy but I definitely have a few stray hairs that shouldn’t be growing where they are growing, lots of tweezing and waxing ensues. But its 4. that I have a major problem with at the moment.
I have always suffered from spots, I cant say acne, as to me acne is constant and many pimple all over the face. I do not get acne as such, what I get are 2 or 3 pimples on my face, usually around my nostrils and on my chin. They start off mild, blind pimples and a lot of the time the go away but when they dont… Oh boy, they get huge and red and sore, I look like I have been stung by a swarm of bees and did I mention they are sore?
The last two months have been hectic, as one disappears another takes its place, right now I have a large red patch below and to the right of my nostril, this one is blind and freaking sore, I have three, evenly spaced spots across my chin, one smack bang in the middle and one on either side of my mouth.
I also have two small cysts/pimples on my panty line and these ones take forever to go away because of the constant pressure of my underwear. I have been getting these cysts since I started getting my periods 17 years ago. They are the bain of my existence.
I can deal with all the symptoms, I can even deal with red spots on my face, what I cant deal with is the pain! I live on pain killers. I’m grouchy and irritable and touchy and miserable.
I have tried face washes, supplements, facials, reflexology, the works! The only way to stop the spots is to either fall pregnant or go back on my pill… Need I say more?
Thank you!
Thank you for showing us so much support.
Thank you for lending me your shoulders.
Thank you for your encouragement.
Thank you for your strength.
Thank you for not judging.
Thank you for listening.
Thank you for the hugs.
Thank you!
The average bra size today is 36C. Ten years ago it was 34B and other random facts.
I found this on Laura’s blog…
- My favorite time of day is …when I get into bed in the dark and the quiet.
- Leftovers are …..the best!
- I know people who are ……amazing.
- I know other people who are …. drive me insane.
- My favorite sandwich is …..club sandwich (with macon NOT bacon).
- People say I …. am loyal.
- I am …. waiting patiently.
- Personality traits I cannot stand …. dishonesty, disloyalty, cheats.
- When I’m upset, I can’t …… stop eating.
- When I’m happy, I …..sing.
- If I could be any movie star I would be ….. Harrison Ford.
- I refuse to read …… political nonsense.
- I always try to …… be helpful.
- Cocktail of choice is ….. not really a cocktails person, I prefer scotch.
- I wish I didn’t look like …. I was so much younger than I really am.
- I think it is fun to ….. jump on the bed with Aaron.
- When someone pushes me too far, I ….. cry, great big sobbing tears.
- I’m really bad about ….. remembering important dates.
- My least favorite word is …… No!
- I’ve made really good choices when it comes to …. the man I chose to spend my life with.
- I have not made very good choices when it comes to …… jobs I’ve had in the past.
- It makes me happy to hear …… Aaron being happy.
- I believe that prayer is ….. not for everyone.
- The most important word in my world is ….. love.
- If I were a better person, I would always be …. less selfish.
- I hope I never lose my ….. integrity.
- If I were a cake, I would be ….. Red Velvet, sweet on the outside, wicked inside 🙂
- The nicest celebrity I’ve met to date is ….. Sass.
A Female2Female Giveaway!
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Follow them on Twitter.
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Leave a comment on the post.
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Simple!
Where we are and where we are going
*WARNING: this post contains discussion on human reproduction, the female reproductive system and trying to get pregnant. If you have a sensitive constitution stop reading now.
Yesterday I went to see my gynecologist, Dr H. I made the appointment at the end of my last cycle when, once again, we were not pregnant.
It turns out that day 12 is an ideal day for a scan to check what is going on.
We are on a Clomid cycle, 1 x 10mg tablet for 5 days. At this stage there should be one good egg, mature and ready to travel down the fallopian tube, the endometrial lining should be 8mm thick and I should not still be spotting.
We found at least 8 medium sized follicles (none of which look like they will mature), the lining was only 3.7mm thick and yes, Im still spotting…
The result of the scan? Once again I am classified as polycystic. This would also explain the weight gain and the large family of pimples that have taken up residence on my face.
Dr H also told me that based on the scan yesterday its not likely at all that this month would result in a pregnancy, even if we managed to fertalise a substandard egg, it doesn’t have any lining to attach itself to.
The solution? A round of double dose Clomid, 2 x 10mg tablets for 5 days and a scan on day 12 of my next cycle.
If the double dose works and the egg is good and the lining is good then we are A for Away. If it looks good but I dont fall pregnant we will try the double dose of Clomid for another 2 cycles before resorting to sending me to a specialist.
If the double dose doesnt work then I am leaving my amazing Dr H and moving on to a fertility specialist.
I really really hope the double dose works. Moving on to specialists is scary, it makes it even more real than it already is. Im also not sure how far I am willing to take this, I cant picture myself doing IVF, but who knows, if thats where this journey is taking us then maybe I will be able to take that step. I suppose only time will tell.
Again, hurry up and wait…
Coming out of the closet…
For 12 months Paul and I have been trying to have another baby.
There I said it!
The reason I started protecting the post on this topic is that in Jewish tradition, you don’t tell anyone that you are pregnant until you are three months along. I figured if I started talking about trying and then stopped talking about it then it would be obvious and what would the point be etc..
The reason I am ‘coming out the closet’ is that we have been trying for 12 months! A whole YEAR! The support I have had from the people who have read the posts has been amazing and such a source of strength for me.
I need more of that support, I need to know that there are people out there who are rooting for us. I also need other women (and men) who are struggling to know that they are not alone. If reading my posts and the responses to them gives even one person a sense of comfort in any way then that makes me happy.
So, here is a list of the (now) unprotected posts.
Working on a new post as you read this too…
Thank you for coming on my journey with me!