on the bright side...

i know, i know, you hear it often from other believers, "It's amazing, but God always seems to meet me right where I'm at", whether it be a teaching, a devotional, or in my case, the current book i am reading, "How to be Well when You're Ill" by Marva Dawn.

whatever issue i seem to be struggling with, 9 times out of 10 the chapter i open and read is concerning that issue. i can't believe this is coincidence.

today my issue was about feeling useless...feeling useless because of how my infirmities make every day things difficult or impossible to do. there are several things which are hard for me to do, one is to make plans, such as to have coffee or dinner with friends. so today's chapter was on this subject, and very encouraging.

i don't take things for granted as much anymore. for instance, i was very blessed (though also very scared) when my wonderful friend Emily wanted me to throw a birthday dinner party for me last friday. although the week had been hellish, God had grace upon me, and i felt well enough to have dinner with my friends, and it was a huge blessing to me. i was also able to have dinner a couple of nights later with my husband and son, and such moments are so precious to me. oh yeah, i'm 39 now  by-the-way. i'm not sure how that happened, but it did.

there are a few other things i in my life that i like to do that are also difficult. like standing or walking for long periods of time, and by long, i mean about 20 minutes. my back simply cannot support my frame well enough, and pain and fatigue sets in. i also really enjoy creating art, and like most women, i feel better when my house is relatively clean and organized. my back limits these activities as well. so i've had to learn not put pressure on myself, and do things when i am able. Jeremy and Jonah help a lot with the house, thankfully, and i create art (collages, necklaces, etc.) when i am up to it, which is a nice outlet and distraction for me.

i have been blessed that a woman found a cross collage i made and have for sale in my Etsy store, and has commissioned me to make 6 of them! it's taking me some time to make them, but they should be done by sunday. i am quite aware that this is a blessing from God. He is using me to bless others with my creations, and that means so much to me.

my prayer is that i will become well enough to do more for Him, but even if i do not, that i will find my contentment in Him, like the poet Milton did, when he went blind, followed by the death of his wife and not long after, his beloved son. considering his blindness, grief and inability to serve God with "day-labour" as he longed to, he wrote this poem:

Sonnet XIX: When I Consider How my Light is Spent

When I consider how my light is spent
Ere half my days in this dark world and wide,
And that one talent which is death to hide
Lodg'd with me useless, though my soul more bent
To serve therewith my Maker, and present
My true account, lest he returning chide,
"Doth God exact day-labour, light denied?"
I fondly ask. But Patience, to prevent
That murmur, soon replies: "God doth not need
Either man's work or his own gifts: who best
Bear his mild yoke, they serve him best. His state
Is kingly; thousands at his bidding speed
And post o'er land and ocean without rest:
They also serve who only stand and wait.


indeed, "They also serve who only stand and wait" are comforting words to me.

botox and lamenting

i'm simply here to write about today's procedure, and to pour out my emotions, mainly my fears and anxiety. please, i would appreciate if no one tries to comfort me or "correct" my feelings... in case you didn't know, doing so is called invalidation, and it is very hurtful, and very common. it happens when you do not enter into another person's pain with them, and try to change the way they are thinking and feeling. even though your intentions may be to "help", you are actually further burdening the person in pain. you can get a quick lesson here: INVALIDATION  it's a good read. no really. go read it. everyone needs a good lesson on the subject or a reminder of how harmful it is, even me.

so i had a nerve block today using Botox... right at the site of the problem, or should i say "directly into" the problem area. it hurt less than i feared it would, as the doctor did a local anesthetic so i never even felt the Botox injection, but what did disturb me is that even though i was thoroughly numbed "down there" i could still feel the PGAD. i guess the sensations are much deeper in the tissue than i realized.

unfortunately, the female clitoris has about five-thousand freakin' nerves... 5,000!!! so it is very possible that the Botox is NOT going to effect all of them.

my doctor informed me that 1) the Botox will not take full effect for two weeks 2) i will probably be in a lot of pain tomorrow and it will take a couple of days until i am better, and 3) he hopes that the Botox will not impede my ability to climax when i am forced to "relieve" myself.

Botox stays in your system for 3 months. so i could be looking at 3 months of torment or relief. in 14 days we'll know.

so with all this weighing in the balance, as you might imagine, i am freaking out a bit.

normally when i get scared/ have anxiety, i become immobilized, and then the dark weight of depression descends as i start to think about how i may never be free from this condition. i pray and pour out all my fears in God's presence, and tell Him how i cannot comprehend why He has allowed such suffering into my life --suffering that is beyond my control, that is no longer manageable with medications, suffering that is so overwhelming physically, mentally and emotionally and takes me to the very edge of my sanity. i tell Him that i love Him but am also angry with Him. this is not the life i wanted... i never wanted to "share in the sufferings of Christ" like this... not for the past 18 fucking years, and who knows how much longer???

it's not as though i haven't been proactive, dammit. i have seen 4 different doctors these past 12 months: my family practitioner, a urogynecologist, a pain management doctor, and my current doctor who specializes in many areas. i have had 5 MRI's, 2 painful and unsuccessful spinal nerve blocks. i drastically changed my diet, quit smoking, and tried a slew of medications. i seek God continually and pray constantly. i read His word as well as helpful, teaching Christian books everyday, and i just started seeing a female christian counselor... still there's been no change in my PGAD. i even suffer when i'm asleep as my dreams are awful and disturbing.

i tell God that He knows, only He knows how truly weak i am. He knows my thoughts and He knows that i crumble when i am in torment. He knows that i am often frightened beyond comprehension.

sometimes i wish i were really sick, like i had something terminal and painful, not suffering with unwanted, chronic arousal that does not serve any purpose. sometimes i think i would prefer pain over this embarrassing disorder.

of course, my true desire is to LIVE, but to live without PGAD! despite my suffering, i honestly have an incredible life: i have a loving, wonderful husband, a beautiful, sweetheart of a son, two adorable dogs, great friends, and we actually own a house that is my dream home! all these wonderful gifts are all around me, and i only get to truly enjoy them a few days out of a month, if that.

i'm not giving up. not any time soon. i plan to press on...to keep trying to place my trust in God, or rather, as i have been praying, "Lord, build trust in me for you, because i do not possess it within myself,"and even as i pray that, anxiety rises up in my throat, and i have to swallow hard. take a deep breath.

my son turns 17

today my son Jonah turned 17. i don't really know how it is possible that he is 17, when i can so clearly remember the day he was born, and the beautiful baby he was, then a blond, curly-haired toddler, then an adorable, laughing little boy, then a big boy, pre-teen, teenager...and now...17???

yes indeed, Jonah, my little big-boy is 17, and he is simply amazing --and not because of anything Jeremy or i did. Jonah was born with a huge, gentle and compassionate heart that God fashioned within him. although Jonah has certainly gone through some very rough times because of the mess that Jeremy and i were for so long, Jonah has also seen how real and loving God is and how He has changed us with His love, and Jonah loves God as well, which, of course, makes me extremely grateful.

my heart is overwhelmed with love for my son, and i am so proud of how grown-up he is. for almost a year now, Jonah has worked two days a week with his father in sales, and when i finally saw Jonah at work, he was so professional and mature i could hardly believe that was my "baby" interacting with strangers and running a cash register!

 

Jonah is very into cars, cars that ride low. a few years ago Jeremy and Jonah did incredible body work on his truck (which was my father's) and gave it a new grill and bumper, new wheels and rims, a new paint job, and of course they lowered it! it looks so cool. then, just recently, Jeremy got Jonah another car to be a fixer-upper. i couldn't tell you anything about it...except that i am so grateful that my husband supports his son's interests and dreams and that they get to do cool projects like that together. Jeremy is a great father who adores his son, and they are my two favorite people in the entire world.

Jonah is also a skater. he loves skating as much as he loves cars, if not more. nearly everyday he and his best friend Chris go out skating. i will hear, "hey Mom, we're gonna go skate, okay?" i call back, "Okay! be safe! i love you!" "K!" he replies, "love you too!" then i hear his truck start up and drive away, and i take a deeeeep breath and pray, "Lord, please keep him safe. Keep Jonah and Chris safe in every way today."

as a mother, i of course want all the best for my son, and i especially never want him to be hurt emotionally, physically or spiritually...but i also realize all those things are not in my control, but in God's hands. i also know that my hopes may be unrealistic, as pain comes when living in this world...but some people suffer far less than others, and if it's possible that Jonah can suffer less in his life than what his father and i have (and continue to suffer with) please, Lord, let it be so!

my heart's true prayer for Jonah is that no matter what, he will always have a relationship with God, even when things go wrong, when things hurt --and when and if something awful comes to pass and all he can do is curse God and be angry at Him, that he will remember, in the end, how much his parents and The Trinity love him. i believe that is Jeremy's and my deepest longing for our son, and i believe it is God's deepest longing for him as well... and i believe it will be so for Jonah, who was born with, and lives with, the precious, caring heart that God gave him. i am beyond blessed to call myself Jonah's mother. i have known no greater joy than witnessing him grow from a baby into a young man. so i thank you, Heavenly Father, for Jonah, our beloved "Dove of Peace".

huge, small miracles

for nearly 3 weeks now, i have not had more than a 24 hour break from my PGAD. today and tonight i have been battling against thoughts of hopelessness and despair, and i have been praying. a lot.

i know that it is God who gets me through. no doubt. and He has done some major things in my life over the past few months.

for one, i quit smoking, something i never imagined doing, but i experienced a horrendous sinus headache (no infection according to the doctor) that was so bad that the thought of smoking another cigarette ever again made me sick, so i just stopped. it was far easier than i thought it would be, so i know it was through His strength in me that i was able to quit. (on a side note here: My headache was so severe my sweet son had to drive me to the doctors. he's just an amazing young man that i adore and love with all my heart.)

i also stopped drinking Coca-cola, which i was just as addicted to as smoking. i quit diet soda too. now i have about one or two cups of chai tea a day with stevia and almond milk.

almond milk? yes, because i also quit dairy.

i eat fruits and vegetables on a daily basis now too, instead of all that refined crap i was eating.

then, about a week ago, i quit wheat and gluten.

i also starting seeing a female christian counselor that i really, really like. she is the one who suggested i may want to stop eating gluten because studies have been found that gluten effects the peripheral nerves (nerves outside of the spinal cord). i researched it, and she's right.

i'd like to say i am feeling a huge difference in my health, but the only thing i have noticed is that since i quit smoking, my sinus headaches have reduced by about 85%. crazy. i am so thankful.

so no smoking, no soda, eating healthy, no dairy, no gluten and seeing a counselor are all huge, small miracles that God has lead me to do, as well as giving me the strength to make the changes with ease.

exercise is the next step, which i am praying He will help me to do.

still, i linger beneath this dark shadow of unpredictable, and chronic PGAD.

i will soon be seeing Dr Redmond so he can test my O.I. muscle (in my pelvis) to see if it has unrelenting tightness. if it does, we are going to try botox injections, which i pray will work.
the heaviness of this burden is so difficult to bear, and i am praying He will use Dr Redmond to bring me some relief.

i am currently reading a book that a friend of mine gave me, and i think it is the best book on suffering and our relationship with God that i have ever come across. mind you, i have moments when i struggle with what the author is saying, although i know it to be true, and as i press on through the book, it has proven very encouraging.

the book is Being Well When We're Ill: Wholeness and Hope in Spite of Infirmity by Marva Dawn, a christian teacher and author who is completely blind in one eye, with partial vision in the other, and she only has use of one leg. she wrote this book from her own struggles, and truly knows what it is like to be a child of God who suffers and the mental/emotional/spiritual battles we face. i highly recommend it for those who suffer, but also for those who have a suffering family member or friend, in order to better comprehend what chronic suffering is like for an afflicted child of God.