#wegener's

[bunnimain]

Pills

Seeing them organized like this, makes me feel calm. It's like mindfullness. 🍃

[bunnimain]

So wonderful to not be in so much physical pain anymore. 😊 I was still a little bit shell shocked yesterday evening from the hospital stay. Was in constant fear of my condition worsening again and the fear of death lingering in my mind. Today I feel wonderful though. ☺️ Have been able to help my mom make christmas dinner, even tho the plan was to just take it easy. But it just shows that I'm doing ok.

I'm pretty sure my granulomatosis with polyangiitis is just a mild version, so that means there's no damage to my kidneys, lungs, heart or limbs, just some parts in my upper respiratory system where all the symptoms were (nose, throat, eyes, inner ears), and the cortisone treatment seems to be working well! I'm going to continue eating it at least until the next control visit. What I learned from the doctor, is that my small blood vessels have gotten inflamed, which caused the damage, and it was probably activated through the flu I previously had.

[ursus-argenteus]

Health stuff under cut.

Two major things:

Dad's been diagnosed with Wegener's/GPA. It doesn't appear to be genetic at all, but there is a correlation between that and other auto-immune disorders in related family members... so I guess I'll just have to add that to the list of things to let doctors know about and keep an eye on. (This doesn't surprise me entirely, considering I recently found out I needed to add lupus to the list.)

I have my first consultation visit tomorrow morning with the sleep specialist to start evaluating me for sleep apnea. I'm with my dad: I both hope they find nothing, and hope they find something, because "nothing" means more searching for answers (and I don't see many left).

I hope I get answers like dad has. He had to wait almost ten months... maybe I won't have to wait as long.

[mayshaink]

Fertility

     The last time I'd had my period was in January, or before and now it is May.  I have never had a normal cycle, but a several month lapse seemed strange even for me.  Then the thought occurred to me that the damaging side effects I'd read on all my bills bottle finally took.  The same pills that I can feel wearing down my teeth and skin and joins like I'm slowly being buffed by sandpaper.  Thinning out at a higher rate. 

But Friday night I came down with a sudden bug and in the midst of all the other illness, and cramping ended up being my very late monthly friend.  I was relived in a silly almost childish way, even as I spend most of my night with my head in my toilet. 

Honestly when I found out I had Wegener's six years ago, I thought it would be a short run.  I'd live out my last two years traveling, maybe doing some writing, talking to friends, and drinking too much wine before I'd made an a young be graceful exit from this world.  Instead, I am living a longer but limited life.  I don't like the loss that I'm seeing in my body and self that no one else seems to see.  I thought my fertility was just another one.  Not that I'm in a place to have children.  Nor does a period mean that I'm still able to.  But at least for now it is one less thing to completely check off the box. 

It is a strange thing though, even if you never planned on having children, having that option taking away it creates an ache.

[c-ertaindarkthings]

just a note-

i know most of the people who read my work started to because of my love poetry. i could write about love until i crack. it's because i love so much that i feel so empty all the time. i haven't loved someone (in a romantic sense) in a long time - about a year now. I was with my ex-boyfriend for three and a half years before that and i loved him fiercely and surely. I loved him comfortably and with a sense of family and home and warmth and hearth. he was my fireplace. that's the best way to describe him i think. and even now, i am out of love with him, but he was my best friend. i want to call him and ask him about his day. i want to turn around and joke with him.

but i don't have that right now. so sometimes i write about my struggles with my health. it can be dark and depressing. i hope you will stay with my through that. even if my poetry gets no notes, knowing that i have some followers, that someone somewhere out there must have read my words. must have heard me. is helpful. they are words i cannot tell my family. they already have so much worry for me. i have to be strong for them. they keep telling me  they are proud of me. but they don't know how weak i am. how much i supplement in ways i shouldn't. i try not to. but sometimes, like tonight, i fall. i will try not to tomorrow. i hope i'll succeed. 

good morning to everyone who is waking up. good night to those who are going to sleep. i love you all. thank you for taking the time to listen to me. i cannot tell you how much i appreciate it. because i truly do. i think being in this community has started to really heal me.

but man - i wish this writer's block would go away! i think i need to take a break and just read a little more. i'm just too stressed lately i think. i had a flare up of my illness and it made me a little scared. 

<3, Leena

[mayshaink]

When and How do you tell someone about your illness?

When and how do you tell someone else about your condition?  Most of the people I interact with have known me for a long time, before Wegener's.  But now I'm faced with a new person...how do I introduce the topic? I don't want to be dramatic, but need to get across that it is a life long chronic illness.  Will he still be interested after, maybe not.  Any advice?

[mayshaink]

Good Days.

Good Days. I noticed that I used this expression in my last post and thought I'd explain some meaning behind it a bit. 

Good days.  When someone is chronicly sick, a diease like mine that will not be cured.  Or a condition maybe like other who have constant pain, severe allegies. It could be an addicition, anything that comes back to haunt you.  If they have to deal with this condition, reguardless with what it is, and it is reoccurring they will have "Good Days" and "Bad Days".  Days when they are the victor, and days when they don't feel like they are much of anything.

The phrase "Get well soon", is nice, but in many cases terribly navive.  Some times people don't get better, and sometime that's not the best thing to hope for. I've had Wegener's for 5 years and as time goings on that number will only get larger.  There isn't an easy fix and hearing get well soon feels like that the person you just told about your chronic condition didn't really listen good enough.  Which may not be true.  It is hard to know what to say.  But just trust me, that is not the best phrase in the world. 

When I talk to my friend who has a completely different illness, but something that will take her years to get through we talk about our good days.  Just because you have a burren to carry that doesn't define you.  Just because your burren don't leave as soon or easily as others that doesn't define you either.  So we talk about about the good days we have had because isn't it just wonderfully to know that no matter what you might just find you actually have more good days then bad and why not focus on the wonderful things in life. 

Anyways so it is hard to not look at life sometimes as a series of good and bad days.  Wish your loved ones not just to be well, but that they would have many good days to come.  Days where they would know that God and you love them very much. Days where they could experience the many joys in life, from a sick bed or not. 

[mayshaink]

Tumblr Focus

It has been a while since I had a blog.  I had an xanga for years, but then my writing went offline.  On facebook and G+, the posting are well brief and highlights of events.  It like a mass of birth announcements, wedding announcements, deaths, oh and food logging.  I guess I miss the everyday lovies of life. 

I haven't decided what this blog will be yet, if I will have a focus.  Will I focus on my weight, and my new goals for cleaner eating? maybe.  My Breville juicer comes in on tuesday and that should provide many and many mishaps.  After my many hiking adventures in South California I thought I could very easily write "A Fat Girls Guide to Hiking".  Sometimes I greatly disagree with the trail descriptions, and thinking about writing it makes me laugh. 

I could write about living with a rare autoimmune disease called Wegener's granulomatosis.  How in 2008 it's appearance change and continues to challenge me daily. 

I could write about my desire, not so secret desire anymore, to become a published author.  The struggles to be honest and expressive in my works, and the classes and art I'm involved with along the way. 

I could blog about my faith, my family, and my friends? 

How about everything?  How about on a good day I will write about all my issues that try and hold me back, and all the ways they don't because I'm determine to get as much out of life as possible.