Showing posts with label life. Show all posts
Showing posts with label life. Show all posts

Tuesday, December 18, 2018

Another Day of Me and Maybe More?

Originally this blog was started to help me process every thing I was going through with my stem cell transplant. Then after it all calmed down, i stopped writing. I automatically assumed I had nothing anyone would want to hear.

Im learning now, I need to write for me and in the process, I hope someone reads and relates. My greatest wish is that someone can learn from my journey, from my pain, and it can help them. We all know Crohn's doesn't just affect the body, but it alters the mind as well. Sometimes all we need is someone else who gets it. You know, REALLY GETS IT!

I hope that as I start back writing more often, God will give me the words that you may need to hear.

As for today, remember you are special and loved. Crohnies United!

Thursday, August 17, 2017

Uneventful is What I Worked For

I haven't been posting as much because my life has become rather uneventful. As I was preparing to go to bed, it hit me. I worked hard for this lifestyle. Heck, I worked hard for life.

My life may be boring and mediocre now but I wouldn't have it any other way!

For over 13 years, my life has been Hell. I was raped twice. I withstood verbal, sexual and physical abuse from a boyfriend for 5 years. I survived his attempted murder. I was diagnosed with Crohn's and fought hard to get better, when really I was fighting a losing battle. I was dying when I went through a stem cell transplant over 600 miles from home. Almost died during that as well. I have suffered anxiety, panic disorder, PTSD,  and suicide attempts.

It's been a long, difficult journey but look at me now. I'm overall pretty healthy, I'm the happiest I have ever been, and I am stronger in my faith more than ever before.

Because of the difficulties, I can now celebrate all my wins, regardless of size. I celebrate being able to go to the beach without rushing to find a bathroom.  I celebrate walking around in the park with no pain. I celebrate not having to worry if I'm going to survive my next beating.  I even celebrate getting to eat grapes without winding up in a hospital bed.

Life may be ordinary and uneventful, but, man, it's amazing!!

Thursday, October 13, 2016

When You Live With Pain

I have been diagnosed with spondyloarthritis. And i cannot sleep! Even though im on ambien for my insomnia, the pain is relentless and i get no more than a few hours of broken sleep a night. I'm starting to get beyond frustrated with the fact my meds havent been preauthorized yet and my dr won't call me back.

When i saw him the 1st time, he asked my pain level. I told him a 10 because it was. I could barely move, walk, sit. I cant even bend over. He said no a 10 means you wouldnt be sitting here talking to me right now.

Hold on. Let me tell you something! For over a decade, i have been poked and prodded, been through chemo, a stem cell transplant, every test imaginable, felt like i was giving birth to my intestines 15-25 times a day, was malnourished, had multiple picc lines, almost died twice, had surgery, have given my self injections for years, broken multiple bones, had my bones drilled in to 3 times and God knows what else. I am not a stranger to pain. Just because you can't read it on my face, doesn't mean it doesn't exist. It just means I've been through Hell already so I know how to walk through fire.

Please don't underestimate my pain, based on my facial expressions.  You haven't live through what I have.

Tuesday, March 1, 2016

Sooo Sick and Miserable

I still haven't gotten better in weeks. I've been super nauseous, throwing up bad and switching between constipation and watery diarrhea. I have had a couple "ok" days in between but not much.

I went to see my doctor  (my actual dr and not a work in) yesterday. He put me on antibiotics even though my labs came back fine (always baffles me how they can when i feel like THIS). Hopefully it'll rid my body of some of the bacteria and I'll start feeling better.

He also finally got me scheduled for the camera endoscopy. So today is prep (yay....) and tomorrow at 7:15am I am going in to swallow the camera. I will wear a device for 8 hours and then return it. It will take a couple weeks for them to read the images but hopefully they'll be able to find out what is going on!

I think it's funny because people keep saying things about feeling bad because I am so sick. I just keep telling them, it's life for me! I can't let it get me down or I would always be down! I have learned to get used to it and I am just thankful that i don't have to worry about losing my job or trting to make it through this. It also makes me a lot more thankful for the good days or even the ok days! I feel like i have a lot more appreciation for life than most and I'm good with that. Of course, i get frustrated with all the tests and when I'm laying in bed in agony, i cry and want it to end, but at the end of the day i know I'll be ok! :)

Saturday, February 20, 2016

Stress and Sickness

I stayed sick for a week straight. It was definitely stress induced since it hit immediately after something stressful happened. I haven't been able to eat, I've been super nauseas and have had watery diarrhea really bad. I went to the doctor because i was definitely dehydrated but they just ran some blood work and i have to take stool studies back up to the lab on Monday.

Also I STILL haven't been scheduled for the pillcam! 3 weeks later and NOTHING. Ugh!!

Thursday, March 26, 2015

Missing the Retreat

I've been having a major flare. Well it feels majorm im in constant pain, of course cant stay out of the bathroom and I have zero appetite. Im drinking a lot but it all messes with my stomach and feez dont dare I eat even a bite a day :(

My small group at church is going on their retreat this weekend to the lake. Crohn's told me I cant go.  It sucks. I was looking forward to it big time. But how can I go sleep in a cabin with 10 people when im using the bathroom every 10min, weak from not eating, and yeah cant you picture me up until 4 or 5am and theyre getting up a few hours later smh.  The logistics dont work out. So thanks for stopping me once again crohn's.  I honestly feel its better than going and being miserable. I'll stay home and make special plans with my bestie :) she always knows how to lift my spirits when im down or in a flare. She gets it. And THATS what I need!

Wednesday, January 28, 2015

Just A Thought

I was just on a Crohn's Facebook page and I was looking at the different issues we, as crohnies, face and how the world sees us. I've discovered that we can be quite the performers.  Everyday we deal with pain, urgency,  accidents, anxiety, illness, and so many other things and yet we hear all the time how great we look. Well, for one, the disease is in our gut, not our face. Secondly, we are incredible actors. Somehow we manage to get up and get out and live the same life as everyone else...in a outer appearance kind of way. Our bodies may get weak, but our spirits are strong. We handle the cards we've been dealt, smile, and live the best we know how.

Saturday, December 13, 2014

Loving My Life

I just want to say what a blessing my life is. I am truly happy. I have amazing friends and a wonderful family and I couldn't ask for more! God is good! :)

I'm getting tests done to check on my Crohn's this week. But hopefully since mu symptoms have decreased,  there won't be much to find out!

Sunday, September 7, 2014

Ughhhhh

I'm back at the hospital.  A possible TIA. My left side went numb and tingly and my head is throbbing. Since I have a PFO and brain damage,  I'm high risk for stroke so I wanted to rlbe cautious.

But I really wish I just came and didn't tell anyone. Now im basically just a burden and inconvenience to everyone I get close to. I used to do all of this alone. And now I wish I still did. My entire life is an inconvenience. 

Friends, family, they're all bothered because I have to leave things early or go to the hospital way more than a normal 27 year old. Nurses and doctors are annoyed because they are oh so busy.

I've been dealt a life of pain and illness and this is it. This is me. My entire life is an inconvenience. I've actually not sought out medical attention because I didn't want to mess up someone else's day. It seems selfish for me to ruin someone else's plans to deal with my neverending health problems.  It's my problem. No one else's. And I'm honestly sick of the sighs of frustration I get when I say I need to go to the er...like I WANT to be there. I dont want to spend anymore of my time in these places than you do. Trust me.

I've made the decision to go back to how I used to handle my health, alone (with the exception of God). Because let's be real, you only are here because you think you have to, not for me. And you aren't tired because you feel my pain and it hurts you, you're just tired of coming because it interrupts your day..well im sorry and trust me, im doing this alone from here on out. It's easier that way. Remember,  my life is an inconvenience.

Saturday, September 6, 2014

Bright and Sun Shiny Day

I decided to be bright today! Thank you to my sister and brother in law fir stopping by to brighten my day and inspire me to brighten my look! :)

Me VS the World

A lot of times when you have a chronic disease,  others don't get it. That can be more frustrating than the disease itself sometimes!

Sometimes I feel like such a burden and inconvenience to other people but I have to remind myself that this is beyond my control and sometimes it has to be about me and my health and not what others think. I want so badly to please everyone else that I push myself too far. My biggest fear is not being sick or dying or pain, it's being an inconvenience to the people around me.

I posted some things i found on pinterest that really do explain this feeling. So whether you're sick and can relate,  or you aren't and can get a better understanding of how we feel, they're must reads..funny and honest! :)

Friday, September 5, 2014

Almost 2 years post transplant

Just wanted to share some photos of me while im almost 2 years post transplant! :)

Wednesday, March 21, 2012

Day 155: Self-Injury Awareness

Although National Self-Injury Awareness Day (NSIAD) is on March 1, I am offering some information to my readers today. Just because it's important and close to my heart.

INFORMATION
Approximately 1% of the US population has self-injured at some point in time.

Self-harm, also known as self-injury, self-inflicted violence, self-injurious behavior, or self-mutilation, can be defined as the deliberate, direct injury of one's own body that causes tissue damage or leave marks for more than a few minutes and that is done in order to deal with an overwhelming or distressing situation.
It's important to remember that, even though it may not be apparent to an outside observer, self-injury is serving a function for the person who does it. Figuring out what functions it serves and helping someone learn other ways to get those needs met is essential to helping people who self-harm. Some of the reasons self-injurers have given for their acts include:
  • Affect modulation (distraction from emotional pain, ending feelings of numbness, lessening a desire to suicide, calming overwhelming/intense feelings)
  • Maintaining control and distracting the self from painful thoughts or memories
  • Self-punishment (either because they believe they deserve punishment for either having good feelings or being an "evil" person or because they hope that self-punishment will avert worse punishment from some outside source
  • Expression of things that can't be put into words (displaying anger, showing the depth of emotional pain, shocking others, seeking support and help)
  • Expression of feelings for which they have no label -- this phenomenon, called alexithymia (literally no words feeling), is common in people who self-harm
See Osuch, Noll, & Putnam, Psychiatry 62 (Winter 99), pp: 334-345
Zlotnick et al, Comprehensive Psychiatry 37(1) pp:12-16.
People who self-injure often never developed healthy ways to feel and express emotion or to tolerate distress. Studies have shown that self-harm can put a person at a high level of physiological arousal back to a baseline state.
It's natural to want to help people who self-injure develop healthier ways of coping when they feel overwhelmed, but it's important not to let your discomfort with the concept of self-harm cause you to issue ultimatums, punish self-harming behavior, or threaten to leave if the person self-harms again. Ideally, you should set boundaries to keep yourself feeling safe while respecting the person's right to make his or her own decisions about how to deal with stress.

MYTHS

Self-harm is usually a failed suicide attempt.
This myth persists despite a wealth of studies showing that, although people who self-injure may be at a higher risk of suicide than others, they distinguish betwen acts of self-harm and attempted suicide. Many, if not most, self-injuring people who make a suicide attempt use means that are completely different to their preferred methods of self-inflicted violence.
People who self-injure are crazy and should be locked up.
Tracy Alderman, Ph.D., author of The Scarred Soul, addressed this:
"Fear can lead to dangerous overreactions. In dealing with clients who hurt themselves, you will probably feel fear. . . . Hospitalizing clients for self-inflicted violence is one such form of overreaction. Many therapists, because they do not possess an adequate understanding of SIV, will use extreme measures to assure (they think) their clients' best interests. However, few people who self-injure need to be hospitalized or institutionalized. The vast majority of self-inflicted wounds are neither life threatening nor require medical treatment. Hospitalizing a client involuntarily for these issues can be damaging in several ways. Because SIV is closely related to feelings of lack of control and overwhelming emotional states, placing someone in a setting that by its nature evokes these feelings is very likely to make matters worse, and may lead to an incident of SIV. In addition, involuntary hospitalization often affects the therapeutic relationship in negative ways, eroding trust, communication, rapport, and honesty. Caution should be used when assessing a client's level of threat to self or others. In most cases, SIV is not life threatening. . . . Because SIV is so misunderstood, clinicians often overreact and provide treatment that is contraindicated.
People who self-harm are just trying to get attention.
A wise friend once emailed me a list of attention-seeking behaviors: wearing nice clothing, smiling at people, saying "hi", going to the check-out counter at a store, and so on. We all seek attention all the time; wanting attention is not bad or sick. If someone is in so much distress and feels so ignored that the only way he can think of to express his pain is by hurting his body, something is definitely wrong in his life and this isn't the time to be making moral judgments about his behavior.
That said, most poeple who self-injure go to great lengths to hide their wounds and scars. Many consider their self-harm to be a deeply shameful secret and dread the consequences of discovery.
Self-inflicted violence is just an attempt to manipulate others.
Some people use self-inflicted injuries as an attempt to cause others to behave in certain ways, it's true. Most don't, though. If you feel as though someone is trying to manipulate you with SI, it may be more important to focus on what it is they want and how you can communicate about it while maintaining appropriate boundaries. Look for the deeper issues and work on those.
Only people with Borderline Personality Disorder self-harm.
Self-harm is a criterion for diagnosing BPD, but there are 8 other equally important criteria. Not everyone with BPD self-harms, and not all people who self-harm have BPD (regardless of practitioners who automatically diagnose anyone who self-injures with BPD).
If the wounds aren't "bad enough," self-harm isn't serious.
The severity of the self-inflicted wounds has very little to do with the level of emotional distress present. Different people have different methods of SI and different pain tolerances. The only way to figure out how much distress someone is in is to ask. Never assume; check it out with the person.
Only teen-aged girls self-injure.
In five years of existence, the bodies-under-siege email list has had members of both genders, from six continents, and ranging in age from 14-60+. It's a person-who-has-no-other-way-to-cope thing, not a teenage (or female or American or whatever) thing.


INFORMATION

Self-injury is a coping mechanism. An individual harms their physical self to deal with emotional pain, or to break feelings of numbness by arousing sensation.

People can feel the urge to self-injure for hours, and it can feel like there is nothing else to relieve the distress, other than to hurt one's self.
A trigger is an event that pushes a person over the edge and leads them to seek immediate relief through self-harm.
A trigger can be an external event, such as an argument, or an internal event, like remembering a traumatic time.

DID YOU KNOW?
Self-harm includes many harmful behaviours such as self-injury, but includes such diverse matters as eating disorders, risk taking behaviour, drug and alcohol misuse.

We might describe a massive acute drug overdose as suicidal behaviour, but if someone is self-medicating in a chronic manner (over a period of time) then we're more likely to describe it as self-injury, especially if the person explains their actions are to 'help them cope' or 'help them forget'.


When a person is told that their ideas, desires and thoughts are wrong, stupid or not worth considering, that person can feel invalidated, i.e. they can feel unheard and discounted.
When a person finds that all their thoughts are always judged to be silly or not worth consideration, they can be said to be experiencing chronic, or long-term invalidation.

If a person's self expression is inhibited, or even forbidden, then it may lead to such a crisis that they turn inwards, only expressing themselves internally, and this might manifest as self harm.
Self harm can be seen as 'communication to one's self'; a person who self harms may feel that the only way to have a voice, is to keep it silent and private, to express their feelings directly on their own body.
If there is no one who will listen to the emotional outbursts of a frustrated and distressed person, they may turn to self harm as a form of emotional expression. By creating physical harm to themselves, they seek relief from the emotional distress# that they are forbidden to express publicly.

Physical pain can seem easier to deal with than the emotional pain that is trapped inside an invalidated person, and it detracts from the emotional distress therefore offering some kind of temporary relief.
Chronic invalidation is not only experienced by young people, it can effect people of any age, in situations where a person in power, or a group of people, continuously discount and ignore a person. This sort of passive bullying can often be seen in the work place*.

WHO SELF-INJURES?

Self-injury can affect anybody, at any time in their lives. Gender, age, sexual orientation, race, religion, background – they are all irrelevant. If, rather than considering who might turn to self-injury, we instead focus on who could possibly suffer from the emotional distress that can lead to self-injury, it’s much easier to imagine that self-injury really can affect anyone.
Self-injury is a coping mechanism. Anyone who has anything distressing to cope with might potentially turn to self-injury.
So instead of looking at who self-injures in terms of such things as gender and age, we might consider that there are certain characteristics that some people who self-injure share. These include, but are not restricted to, low self-esteem, perfectionism and high achievement, poor body image, trauma and abuse. Of course, a person who self-injures may experience all, some, or none of these characteristics, as may a person who doesn’t self-injure.

Many people who self-injure often talk about intense negative feelings towards themselves. A significant cause of low self-esteem is chronic invalidation by others.

Perfectionists may be very successful in their every-day lives, but it often comes at a personal cost. Perfectionism simultaneously pushes people to succeed to the highest standards, but it also inevitably causes a person to feel they could have done better, or even that they have failed. Similarly to invalidation, this may lead eventually to low self-esteem.

Some people who self-injure have a poor body image. This may, again, be due to invalidation (i.e. consistent comments about weight, looks etc) or may even be due to the media’s attention on the ‘beautiful people’. A person can feel inadequate, or even ugly or inferior. Self-injury may be a way of coping with these feelings by ‘punishing’ the body.

Some people self-injure to cope with traumatic life events, either currently or in the past. These may include bereavement, bullying, break-up of relationship, financial crisis, or physical, emotional or sexual abuse.

Self-injury may also be associated with mental health issues such as depression, anxiety, eating disorders, schizophrenia, borderline personality disorder, etc.

Resource: http://www.lifesigns.org.uk/ (TONS of info here, please go to the website and download the appropriate pdf file..ex. info for teachers, for parents, for friends, for males and so on)

This information could save someone you know so please read!