Friday, August 20, 2010

30 Things About My Invisible Illness You May Not Know for ii10!

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Septo Optic Dysplasia with congenital Panhypopituitarism, high functioning Autism (now called Asperger's) Fibromyalgia, Neuropathy, Trigeminal Neuralgia, Anemia
2. I was diagnosed with it in the year: 1982, chronic pain conditions since 2009, anemia one month ago
3. But I had symptoms since: birth, chronic pain since 3 years ago,
4. The biggest adjustment I’ve had to make is: I'm fortunate that I've grown up this way so it's pretty normal for me, it's hard to pace myself when I'm used to doing as much as I want to do
5. Most people assume: that I'm using crutches because I sprained something
6. The hardest part about mornings are: the whole thing!! I'm very stiff and sore and have a hard time getting out of bed but need to because I have to have breakfast to take my morning meds by 8am
7. My favorite medical TV show is: Mystery Diagnosis/House (I don't really watch much TV)
8. A gadget I couldn’t live without is: my Eeepc and iPod touch, perfect when I'm having a day where I'm stuck in bed
9. The hardest part about nights are: trying to sleep with pain which always seems worse when there is nothing to occupy my mind
10. Each day I take 20 pills & vitamins. 1 injection and biweekly patches (No comments, please)
11. Regarding alternative treatments I: will try anything a few times, I have tried cranio-sacral osteopathy, acupuncture, massage (yay), chiro for the chronic pain. I cannot do alternative treatments for the pituitary issues as that would endanger my life.
12. If I had to choose between an invisible illness or visible I would choose: I use crutches so mine is visible at the moment. I don't really mind, sometimes people get confused when I'm using them one day and not another, my arms are affected too so somedays using the crutches is more painful than helpful, I tend to not go far from home on those days!
13. Regarding working and career: I've been on medical leave from a job I love very much, being a live in caregiver for 6 awesome people with developmental disabilities. If I can't return to work I will volunteer when possible! I just wish it was settled instead of being in limbo!
14. People would be surprised to know: I'm stubbornly independent
15. The hardest thing to accept about my new reality has been: asking for and receiving help
16. Something I never thought I could do with my illness that I did was: travel alone!
17. The commercials about my illness: drive me insane, the fibro one makes me wanna throw things at my TV! there are no commercials about my rare illness
18. Something I really miss doing since I was diagnosed is: washing my hair without pain
19. It was really hard to have to give up: working
20. A new hobby I have taken up since my diagnosis is: sewing
21. If I could have one day of feeling normal again I would: normal what's that? never been normal, sounds boring!
22. My illness has taught me: to rely on God, to reach out to others, to be patient
23. Want to know a secret? One thing people say that gets under my skin is: you're too young to be disabled!
24. But I love it when people: compliment my crutch artwork
25. My favorite motto, scripture, quote that gets me through tough times is: "3 More than that, we rejoice in our sufferings, knowing that suffering produces endurance, 4 and endurance produces character, and character produces hope, 5 and hope does not put us to shame, because God's love has been poured into our hearts through the Holy Spirit who has been given to us." Romans 5:3-5
26. When someone is diagnosed I’d like to tell them: they aren't alone
27. Something that has surprised me about living with an illness is: life goes on, fun times can be had!
28. The nicest thing someone did for me when I wasn’t feeling well was: brought me chocolate and a "greatest grandma" balloon while I was in the hospital! hee hee hee got a lot of looks and second takes from nurses lol
29. I’m involved with Invisible Illness Week because: it's good to be connected and not feel alone
30. The fact that you read this list makes me feel: honoured and empowered, thank you!

Monday, August 16, 2010

psalm 42 and a worrywart! (ME)

Why are you cast down, O my soul,
and why are you in turmoil within me?
Hope in God; for I shall again praise him,
my salvation [12] 6 and my God.
Psalm 42:5

This was a good reminder to me in my daily readings today. I've been so worried about my mom but I know (or should know I chastise myself) that God has a plan.
I don't know whether to have tentative hope for my mother, she called both of my older siblings yesterday out of the blue, she never calls anyone! And she sounded sober.....maybe this is the catalyst she needed. I said today, I don't care if I ever talk to her again, if that is what she needs to stop slowly killing herself, then I have to be ok with that. But I really hope that is not the case because I miss her very much but want her to be well. I have to look after me right now and trust that maybe, just maybe, she is getting what she needs.

Soli Deo Gloria
REformed anon girl

Sunday, August 15, 2010

diagnoses(es es essss)

I know a lot of my new spoonie friends on twitter have been curious about my diagnoses(es es es lol) and I haven't talked about it before, one component is because what I have is rare, that if you know me through other modes of social networking that you will be able to figure out who I am and I really value my privacy and safety of being anon on this blog. I don't mind so much that people know who I am but that this link could get into the hands of my family or people that I don't necessarily want to read or can't handle my honesty. So if this post helps you unravel the mystery of my identity, feel free to tell me but keep it to yourself otherwise. :) thanks! I know I'm weird about this but I want to be able to write what I want to without people I care about getting mad at me for being honest.
here goes! Welcome to the wonderful wacky unregulated world of ME!

Ok first of all I was born a medical zebra, my parents and docs didn't figure out my stripes until I was around 4. I was born with a brain birth defect that is very rare. Basically in utero things got a little sketchy when my brain was developing and some things didn't develop and somethings developed in the wrong spot! oops! It's called Septo Optic Dysplasia (sometimes known as Optic nerve hypoplasia or De Morsier's syndrome depending on where you live, just to make things a bit more confusing eh? lol) and basically it affected 3 things in the development of my brain.

1) my right optic nerve is severed and growing through my pituitary (see 3) which means I am blind in my right eye. That eye turns inward (called strabismis) and I had it corrected when I was 4 and now that it's turning in again I get botox injections in my eyeball 4x a year as opposed to major surgery. It's a vain thing but I'm a girl and it makes me feel better about myself and my appearance.
2) my septum pelucidum (the midline of your brain in lamens terms) has a hole in it, they aren't quite sure what the SP does exactly but it helps the right and left brain talk to each other and is probably why I was diagnosed with High Functioning Autism (now I'm being told they don't call it that anymore, it's Asperger's syndrome) and I have learning disabilities (mild dyslexia and moderate dyscalculia) which means sometimes letters are backwards for me, if I get really tired I read books upside down!! it's a fun parlour trick and I love to read!! I am super bad at basic maths, I am thankful for calculators which I use often, for some reason I love triganomitry (sp?) and other maths that are more complex.
3) my pituitary (which is in the base of your brain encased in bone because it's the master gland of all your hormones and glands) doesn't work because of the silly optic nerve running through it. So I have to replace all my hormones synthetically, which is not only expensive but annoying too! All my glands work but they don't recieve signals from my pituitary to turn off and on.

things I have to replace because my pit doesn't work:
-->I've replaced my growth hormone (made by the pit) since I was 4 by injection and I still take it today as it is important for many more functions (muscle mass, blood lipid balance, psychological wellbeing, mental acuteness, cognitive function etc etc) than just linear growth. When I first started taking GH it was from the pituitaries of cadavers before the biosynthetic was made available, so technically I am an organ recipient and therefore can't give blood.
Lack of GH also causes low muscle tone so sometimes it looks as if my head is on sideways because my head gets too heavy for my neck! lol
--> I have Addison's disease because my pit doesn't produce ACTH (adrenocorticotropic hormone) so my adrenals don't work. I take steroids (prednisone or cortisone) 3 times a day to mimic what my adrenals would put out on their own. When I get sick I have to double or triple my dose because that is what your body would do on its own. You need corticosteroids to regulate your blood pressure and bloodsugars. If I get sick, I get sick very quickly and severely, even with just a common cold. I have injectable meds to get me to the hospital if I can't keep my meds down. I'm generally hospitalized for IV fluids and steroids if I am vomiting, so I avoid barfing at all costs!!
--> I have hypothyroidism because my pit doesn't produce TSH (Thyroid Stimulating Hormone) your thyroid regulates your metabolism and when my med levels are off makes me fatigued, makes my skin dry and my hair fall out.
--> I don't make any female hormones (FSH- Follicle stim hormone and LH Leutinising Hormone) so I take meds for that too, I also take these meds because my bones are crap from longterm steroid use and you need them to properly absorb calcium and vitamin D

My hypothalamus doesn't work very well most of the time either, it's kindof weird, sometimes it works, sometimes not so much!
-->I get easily cold or hot and can't regulate my body temp, but I don't sweat so I often can potentially overheat if I am not careful, sometimes I run fevers that are aweful because I essentially have to have an icebath to cool myself down.
-->I go for stretches of time where I am not hungry or I am ravenously hungry. I have no thirst receptor, so I have to make sure I drink enough fluids.
--> I can go for days without sleeping, it's horrible but I just can't sleep but now thanks to my awesome new doc I am on twice the maximum dose of sleepmeds which actually makes me sleep and I can get up and function, though not too early in the morning! If I know I have to get up early I go to bed and take my meds early or I just skip a night. I really do feel better now that I'm getting sleep at night.

SEIZURES- I don't have grandmal seizures anymore (praise God) and haven't had one in 15 years. I do have petitmal and absence seizures but they aren't a big deal at all. Flashing light will trigger a seizure or chain of seizures for me. I also have myoclonic jerks or sleepstarts where I almost get to sleep and my whole body tenses up like I've just been startled really badly. Can you say TRES annoying!

HEIGHT- I am a little person, I'm under 4'10" and love being little. I think it's easier for a girl to be an LP than a guy to be one.

AUTISM- I was diagnosed with High Functioning Autism which is now generally called Asperger's Syndrome. I have a hard time with certain textures both in clothes and in food which can easily be avoided. I don't like loud noises and will often wear earplugs to the movies because the volume is too high. I don't have many of the social issues my other friends with AS have, I think that I've just learned tips and tricks and cope. I rarely will look people in the eye but generally you can't tell because I pretend to! hee hee fooled you! I looked at your nose or forehead instead! :)

ALOPECIA - No one knows why but I have something called cyclical alopecia where my hair falls out (worse than when my thyroid meds are too low) and I get bald spots. Normally because of this I keep my hair fairly short because I never know when it's gonna happen and pulling out handfuls of your hair is disconcerting , to say the least! but I'm in a good patch! My hair is super long for me because my brother asked me to grow it for his wedding last year and so I did. I had a really bad case of my hair falling out just before the wedding and I was so upset!! My brother then said the sweetest thing "I don't care if you come bald! as long as your there!" but the hairdressers did a great job and you couldn't even tell I had 2 bald spots about the size of a twoonie!

As if all that fun-ness and chronic awesomeness wasn't enough, I have chronic pain issues. when I was younger the docs just said it was growing pains, when I stopped growing and still had them they called it Idiopathic Chronic Pain Syndrome. Now I believe that it was juvenile fibromyalgia all along. I would just have pain a few times a week, it would start with a sharp pain in my ankle and then it would move to my ankle and knee and then til my whole leg was affected. Advil sometimes helped, so did rubbing my legs together like a cricket or having a scalding bath.

3 years ago I broke my hand very badly and that started a domino affect of chronic pain which is where I'm at today. So far I've been diagnosed with 3 chronic pain issues:
--> Trigeminal Neuralgia which is a pinched nerve in the side of my face, for most people it presents as sharp debilitating pain, but since most of my body is atypical mine only presents that way occaisionally, mostly it comes in the form of feeling like a fish hook has been implanted on the left side of my brain and someone is yanking it up every so often, I get very dizzy and have been known to fall over, which is generally bad for people with osteoperosis! lol
--> Neuropathy which is nerve pain, mostly it feels like my feet are being dipped in boiling hot battery acid, sounds fun eh?
--> and last but not least fibromyalgia which is the biggest bugger of all, what they think happens is people with fibro, after and infection/illness or injury (such as my case) that the persons pain receptors in their brain go haywire and end up telling the person they are in pain constantly when they are physically not. SO I am on a combo of Antidepressants to try to stop this pain but they aren't working yet, not found the right cocktail.

It's very hard to get a diagnosis for anything when you have a rare illness/pituitary problems because docs will try to automatically lump your symptoms into what diagnoseses that you already have, but the blessing in having panhypopitarism (the fancy word for a useless pituitary) is that you get to know your body VERY intimately and you know when something is wrong. I can often tell if my med levels are off, just by how I'm feeling, whether my hair is faling out, if I'm fatigued etc etc.

So there you have it! The blessing in this is I believe chronic illness has made me a more persistant, compassionate, caring person and some of the friends I've made because of chronic illness are some of the nicest, most generous, couragous blessings I've ever met.
Thank you God!

Soli Deo Gloria
REformed anon girl

Friday, August 13, 2010

what a mess!

My mom is an alcoholic, she always has been, she quit once for 2 months and I didn't recognise this awake alive person before me, my mum and I have always been beyond close, I've seen her at her worst when my father first left and my older sibs were gone to school. She's a functional drunk, she gets up, goes to work, and her father was an alcoholic before her. *sigh* so somehow that's made it ok.
I feel like the world's worst daughter but she was so drunk last night, I was trying to get her to go to bed because I knew she would try to have a cigarette while she was half asleep and I've always been afraid of her burning herself (which she has) the couch (which she has) or the house down. She got really beligerant with me. One of the things that has frustrated me to no end is that when my sister or brother are around, my mum tries to keep her drinking to a minimum, but they have families, I don't have a family or a spouse to impress so she doesn't even attempt to be somewhat sober when I come to visit, I feel like a second class citizen in my own family. I don't matter enough.

So last night I wrote her a note when I went to bed and left today before she got home from work saying that I wouldn't be able to visit anymore for a while as I can't watch her slowly kill herself. I was supposed to go this weekend when my sis and nephew and neice were going down to visit mum but I emailed my sis and just explained what had happened and she was super supportive.

I've never fought with my mom, I've always put up with her sh*t, over and over and over again no matter how much she abuses me verbally. I feel so bad for just leaving her a note, I'm so anxious about how she is doing with it, I feel bad for my pa (my stepdad) because he'll probably get the brunt of her wrath. We had a chat this morning because I was crying when I came downstairs (I didn't know he was home) and he started crying when I said that I wasn't going to come visit for a while. I feel so bad. I feel so anxious because I don;t know what is happening. I feel like a rotten person.

But the more I stress, the sicker I get and I'm already dealing with so much, I really didn't need this on top of everything else! I really hope that it might be the catalyst for her to get some help but I'm realistic enough to know it probably won't.

Please pray for me, pray for my mum, pray for my pa, pray for my sis who's gonna be stuck in the middle (I hope not!)

I love my mum, I just don't always like her very much.

Soli Deo Gloria
REformed anon girl

Friday, August 6, 2010

eye candy - entitled Sparkly shoes and rainbow mobility aids

a poem-like substance

I wrote this poem last night, when I write most of my poetry when I am unable to sleep because of pain and well, just being me. Hope you enjoy! it is Untitled as all my poems are. here goes!

In dreams.....
Pretty little girl
White dress seems to glow
Against verdant meadows
Brown eyes like a doe

head back laughing
She skips and dances
Eyes so sparkling
With the world's chances

She's so beautiful
Like a swirling butterfly
She sings like a bird
Up to the blue sky

She can do anything
Limitless possibility
So very strong
No such fragility

In reality.....

Pretty little girl
Blue hospital gown
Pale against bleached sheets
Brown eyes cast down

Head back in rest
She secretly dreams
Of where she's free
Instead of ripping at the seems

She's so beautiful
Bravely she fights
Not afraid of anything
Except the lonely nights

She needs help with everything
Struggling with possibility
Of a future stuck and mired
In limitless fragility

As she wins this time
She earns another try
Lips upturn in a smile
Another chance to fly

This has taught her
Love and passion
Enchanting butterfly
Soaring with compassion

Sickness touched her life
Now she helps others
Her companions in arms
Sisters and brothers

Helping to build
A shelter, a community
Where everyone fights together
We help each other be free

Look at the butterflies
See how the dance
A rainbow of colour
Brought together by chance