txt 16 notes
Aug 12th / Sunday / '12

important

there is,
a time to be born, and a time to die;
a time to plant, and a time to pluck up what is planted;
a time to kill, and a time to heal;
a time to break down, and a time to build up;
a time to weep, and a time to laugh;
a time to mourn, and a time to dance;
a time to cast away stones, and a time to gather stones together;
a time to embrace, and a time to refrain from embracing;
a time to seek, and a time to lose;
a time to keep, and a time to cast away;
a time to rend, and a time to sew;
a time to keep silence, and a time to speak;
a time to love, and a time to hate;
a time for war, and a time for peace.

- ecclesiastes 3

this is a biblical excerpt but it is resonating strongly with me right now. not everything can stay as it was forever, that is something i used to take great comfort in until a medical issue affected and inhibited me for almost a year. it will be a year as of this september, and that’s hard to swallow. i can’t help but feel like i lost a year of my life, i am thankful to be able to sleep normally again, and lay down in a bed and be comfortable. i am thankful for every small improvement, although fear, sadness and anxiety have gotten the best of me many times. i do wish i was stronger in dealing with this, but it has affected my ability to do all the things i love in the ways i loved to do them and that is also hard to swallow.

once i fully recover from this (optimism) i imagine there will still be lots of maintenance regarding the hypermobility. i will probably still have to use the NSAID gel along with oral NSAIDs, and can hopefully go off the stronger medications. as much as i now detest wearing the braces it is more relieving to keep them on, or put something soft on my hands and arms to help with the neuralgia. just having my wrists stabilized and prevented from over extending makes a big difference in a day. i’ll also probably have to go through some physical therapy to learn how to move properly and ways that i can practice forming those habits better. just having my wrist flop back (as it naturally does) causes immediate pain, as does fully extending my arm.

i have been very scared. having my leg and then other parts of my body go numb in the skin was so scary, but i am extremely thankful that this is in the realm of sensory nerves and not motor nerves. and now that it’s going away, so is a lot of that fear. my mom and a couple of close friends have been very supportive and that has helped immensely. i don’t know what else i would have done without their help. the friend i previously mentioned whom i had lost, has revealed themselves to be a very ugly person. i edited this entry because they contacted me, but i have to stop doing things like that. it made me lose the peace i gained from posting this. so i’m standing by my words. this is my space.

the last two days have been really bad ones, mostly spent in bed. but the last few weeks were so hopeful i am hoping it is only temporary and i will feel as i did a few days ago with some more rest. i still have trouble saying to people that i am unable to do something, or ‘having a bad day(s)’ so i’m trying to work on that so as not to cause a setback. this is too good to lose. i can not lose this progress as it has made me happier than i have been in so long. when your body is in so much pain that you go to sleep crying and wake up crying, it’s hard to think about anything else. that was back in the winter, and now i am so extremely grateful to be able to fall asleep comfortably :)

so excluding this weekend, i have been able to really keep up with work and a little more. also a first for a long time. it used to be that good days were flukes, but now a bad day is not as frequent so i am hoping the same for this. my arms still hurt for the most of every day, but it is not nearly as bad as it was and the medications seem to keep it at a maintainable level. to have a few hours where they do not ache or create sensations is absolutely blissful. i still get peripheral cyanosis sometimes, but not as often and i think the atrophy in my hands has ceased. but the increase in energy and cognition has helped start to snap me out of a very long depression- which i think will further help my body heal.

back in the winter i would have a good day or two in a row, and i would just be elated and refilled with hope. then when it went away, i would take it really hard. so did my partner at the time, who stayed with me and took care of me through the very worst of things. this person would be with me as i cried for days and days, and he never got irritated or impatient. i can not imagine going through that ordeal alone, the thought of it almost brings me to tears, and i am so thankful for the person who stayed by my side and essentially shared the burden, which took a toll on them as well and for that i am very sorry. i can only hope to be as true of a friend to you when you really need it.

and lastly, but importantly, my doctor confirmed for the second time that this is a genetic rheumatic [generalized, i.e. diffused over the body] problem which was triggered by ‘an extreme event’. i am 100% certain of what it was, and so is she. she told me i am too young for this to be happening, problems like this normally do not manifest for another decade or more. ten whole years. and here i am two years later addressing this horrifying memory i can’t seem to bury.

about two years ago something very bad happened, i was terrorized, threatened, told horrible things about my body, attempted to be taken to court, fucking blackmailed against going to the police and had to apologize for being moody to this piece of shit to make him leave me alone. he would not allow me to lock myself in a room away from him on the night before i moved out, so he removed all of the doorknobs from the doors. i tried to do this because he was drunk and yelling at me as i packed, and throwing things on the floor for me to pick up. i left to go to a friends house until the morning and he spent his time tearing apart my father’s desk and throwing the screws all over the apartment. i was never able to recover it and had to throw it away. he even threatened me from talking about it to my own friends and circle of people, because he knew some of them as well. during this whole ordeal, i said nothing other than “leave me alone” and “i’m going to call the police”. it was difficult but i knew he was out for blood and i could not risk angering him more.

but i am done being scared. and i will talk as freely as i need to, because keeping this inside, knowing that no justice was done unto him in the months of abuse, kind of killed my self confidence a bit, but i am getting that back. he threatened my fucking mother. he threatened to take her house and leave her with nothing. he called my deceased father a pedophile on absolutely no grounds, just to try and mar my memory of him. i had panic attacks for a year afterwards and had to seek therapy and medication to control them. i went from a size 13 to a size 0, and had a lot of bad infections over the past two years. influenza that my body couldn’t get rid of for weeks, a kidney infection that almost landed me in the hospital, and quite a few others. after giving my doctor just a short summary of the above and how it affected me, she said that was absolutely the beginning of this. the start was the weight loss and numerous infections.

i apologize for the long and extremely personal post. i am both scared and relieved at the idea of opening up to the vastness of the internet. i think talking about what’s going on with the details i used to omit will help me make peace with them. so thank you for reading, if you got this far. but to tie it all together, the beginning text is relevant to all of this. the more i have accepted what is happening and the less i try to fight it, the better my body heals. i detest feeling slow and making myself sit and watch tv to relax, but it has helped.

i think it is time to stop fighting to become who i used to be, and focus on who i will become.

  1. akacapa said: RA runs in my family & mine manifested way earlier than with my mom or gmom — but even my worst days are nothing compared to what you’ve gone through. I think your story is so inspiring, sending you all the best wishes for your continued improvement
  2. travors said: Very brave post. Well done and best of luck, there are lots of us silently willing you on.
  3. kniveslikewives said: I feel we have much in common stay strong. As you clearly are strong. The mind can cripple the body I know first hand. I do not know you but I love you because of our shared experience and current similar ailments. You are strong.
  4. setiche said: keep strong (:
  5. nikography posted this