Celebrating Birthdays and Survival

Today I am 30 years old. Most people fret over reaching 30, leaving their 20s and "younger days" behind. My mind is elsewhere today as I survey my life in awe. I've miraculously reached an age I never believed I would reach. I have surpassed ages I shouldn't have passed. Like many with chronic health issues, being told that I shouldn't have survived a situation or I'm not likely to live past a certain age isn't new to me. I've heard such statements since I was 9 due to complications and medical negligence and again throughout high school and into college during a several year recovery period from my reversal and subsequent complications.

I recall lying my head on my mother's lap as she sat on the couch stroking my hair and I told her how I loved her and said my farewells. I could feel the life draining from me, peace beginning to surround my spirit. I was uncertain how many more moments I had remaining but I knew they were coming to a close. I watched her tears run down her cheeks as she gazed upon and told me how she loved me. I had never felt such peace and have never again since this time.

I was back in the hospital soon after, veins being pumped with electrolytes and blood coursing life back into me for another day. If this had been delayed in its delivery by a few more days, I wouldn't have survived. There were many weeks my doctors weren't sure if I'd live to see them the following week due to risk of heart attack or brain seizures. Over the following years my health would gradually improve and become stable again.

Due to my ongoing health crises, I came to fervently believe that I would not live past the age of 21. I held this belief so firmly that I completed all of the end of life documents and arranged the details of my funeral according to my wishes and distributed copies of this information to my executors of my will. This belief was further cemented as I began to develop precancerous polyps within my stomach and my pediatric GI doctor predicted I would develop stomach cancer by the age of 30. The treatment of which I was still unsure I would be willing to subject upon myself.

My conviction was so strong that I was left amazed when the clock struck midnight on my 22nd birthday and I was still breathing. How could I still be living? I have wondered this many times throughout my life. I have been prepared for death for 2 decades and at times I feel as though I have been teased with death and the chance for peace from my health issues, particularly on the most difficult days. I remain ready for the day of death, waiting for the day that I was told would come so long ago.

And yet I continue to survive. And survive quite well in my opinion. I had many years of struggles and presently I am battling chronic nausea, pain, and difficulty eating after a recent hospitalization. I remain standing amidst the battle. Cancer free. Precancerous polyps free.

I have learned a lot over the course of my disease and I have gained a unique understanding of myself, life, death, the world, and what Familial Polyposis (FAP) means for it all. FAP isn't a death sentence to me. It doesn't guarantee to shorten my life expectancy...it simply complicates my life. I won't know how it affects me otherwise until the progression of developments occur. FAP affects each person differently to a drastic degree. My grandfather had very little problems after he received his ileostomy until his death at age 81 from stomach and esophageal cancer due to the FAP. Others are not so fortunate and children are presenting with symptoms and precancerous polyps at younger and younger ages. Each person's story and battlefield is different though in the position of landmines. I refuse to believe I have no choice in my footing amongst the landmines though.

Life's a Polyp Shop

Donate to NORD FAP Research Fund

Depression: An Ongoing Battle

Depression has settled into my life uninvited like a tag along side effect of chronic health issues. It enters and leaves me with little warning at times, the triggers barely recognizable to others. But I notice them. It's a battle that has been waged for nearly 20 years now, beginning with my first year of surgeries. The medical trauma I endured left a mental stain upon my psyche, a reminder of what transpired and what I wasn't able to escape. It accompanies the Post Traumatic Stress Disorder that has been quietened over the years but remains lurking in the dark waiting to be resurrected at the most unwelcomed times once triggered. Together they lie at the edges of my life, waiting for entrance cues.

"DEPRESSION IS SUCH A CRUEL PUNISHMENT. THERE ARE NO FEVERS, NO RASHES, NO BLOOD TESTS TO SEND PEOPLE SCURRYING IN CONCERN, JUST THE SLOW EROSION OF SELF, AS INSIDIOUS AS CANCER. AND LIKE CANCER IT IS ESSENTIALLY A SOLITARY EXPERIENCE; A ROOM IN HELL WITH ONLY YOUR NAME ON THE DOOR." - Martha Manning, Undercurrents 

The Intimacy of Disclosure

Today is my 4th wedding anniversary, a place and time I didn't think I would experience. As a child and teenager with an ostomy and chronic illness that embodies the "embarrassing type" of bathroom issues, I had a difficult time with self-acceptance and disclosure with others. I didn't love myself and I couldn't understand how anyone else would not only be able to love me but also support and help me unconditionally throughout my medical issues. As an adult, I see things very differently now. I have told more individuals in the last decade my story or my diagnosis and issues than I ever have previously in my life. I am better prepared to unashamedly live with an ostomy now than when I had an ostomy.

For the majority of my life I have feared rejection from others in regards to my health and at times I still struggle with this. Yet every person I have disclosed my health issues to has not cared and wished I had disclosed earlier. I remain reserved in my selection of whom to disclose my health details to as not everyone needs to know and it can be a difficult subject to breach without the proper context.

Each person handles disclosure differently. Determining what exactly you want to disclose and to whom is key. Individuals in the health groups are frequently asking about this - what do I tell, when do I tell, and whom do I tell. The answer won't be the same for every person or every situation. You must feel comfortable with your disclosure. Trust your instincts about those around you.  If you feel uncomfortable, then perhaps it isn't the right time and another time would be better for you.  I've known individuals who made public announcements to their classes and others who didn't tell anyone. Please do not let anyone try to make you feel pressured to disclose. This is your body, your health and you have every right not to disclose to someone until you are ready.

I don't recall disclosing my ostomy to others while I had an ostomy but rather afterwards, although I can't be certain of this. My method of selection was to only tell those I was very close to and to use educational segments from the videos of the Youth Rally's I attended. I would show my friends segments that showed and explained what an ostomy was and I followed this with questions to determine their reactions to an ostomy. If they reacted in an accepting manner I told them that I previously had an ostomy and shared some of my story. In romantic relationships, I never disclosed early on in the relationship and in fact, the majority of my boyfriends didn't know any details beyond I had surgery due to colon cancer. I chose to disclose to my husband after a tearful misunderstanding. I thought he was making fun of bowel issues such as diarrhea and incontinence. The correction of this misunderstanding allowed for the door to be easily opened to disclosure of my own health issues. Presently, if the context seems appropriate I simply just disclose whatever amount of information I feel comfortable disclosing with that person at that time. I've also discovered that simply answering that I have Short Bowel Syndrome is very effective in conveying information without spelling out the details that can be uncomfortable to explicitly discuss such as chronic diarrhea.

Finding someone you can be yourself with, completely comfortable and open happens in various types of relationships. For years I thought I wouldn't find such relationships - platonic or romantic. I let my fear stop me from reaching these levels of intimacy in my relationships. I experienced an incredible freeing once I allowed myself to be vulnerable enough to be completely honest about all the details of my health and allowed myself to be loved without fear and questioning the other person. The more a person can understand the more that person is able to support you. Acceptance comes in different forms whether it's full knowledge with explicit detail or implied knowledge.

Stress and Chronic Illness

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Stress is a powerful energy that can help and harm us. Stress can serve to motivate us to take action and complete tasks but it also can place great pressure on our mind and body with negative consequences. Stress affects every part of our body and often triggers or exacerbates symptoms and diseases. Find a full description of the effects of stress on the body here.

With small amounts of stress, I notice the inconvenient, annoying symptoms of muscle tension, irritability, anxiety, and difficulty sleeping. However, when I have intense stress the symptoms worsen and in addition I experience increased degenerative joint pain, sadness, often have crying spells, and my SBS symptoms worsen. The combination of inadequate sleep and stress sends my SBS symptoms into hyper drive. I'm unable to tolerate foods, even liquids, and any movement becomes unbearable. Ingestion increases the amount of waste produced to be expelled at a rapid rate and movement further increases the frequency of those restroom trips. The ongoing barrage of this cycle results in pain and soreness that spreads to my entire body. Sitting and lying down are even difficult as my body struggles to slow down the SBS.
From the onset of this cycle, I know my stress is out of control and I'm walking a thin line; I need to check my stress immediately.

We all experience and manage stress differently. I'm very Type A Personality, I'm a planner and a problem solver. For me, I have to tackle the problem and find a resolution. However, once I've hit the boiling point the first thing I must do is cease ingestion and find time and space away from everything - work and activity - so that I may allow my body to begin to relax. Once I secure this, I can begin resolving the source of stress. Identifying and establishing a game plan is a must for me followed by expressing my feelings through verbal or written word and utilizing a sounding board.

There are many options available though to help manage day-to-day and chronic stress to protect our bodies and prevent reaching the boiling point. Consider the following in your own regiment for stress management:

• Stress Management Diet - food plays a vital role in our health and eating foods rich in vitamins and minerals that promote healthy brain chemicals can help lower stress hormones. Participating in cooking classes can provide an additional benefit for learning new ways to create healthy and tasty meals incorporating such ingredients. Cooking classes may even double as a stress relieving activity. Communities often have various cooking classes available, such as the one offered by Chef Alex Friedman Master Class.
• Meditations - the different types of meditations are endless. Yoga, Tai Chi, Pilates, and Qigong are great individual or group exercises that include meditation. Guided meditations are also incredibly useful and can be learned to be used on your own in any situation.
• Breathing - although breathing is used in meditation, there are different exercises for focused breathing that are very helpful.
• Sleep Well - getting adequate and restful sleep is a key factor to protecting one's physical and mental health. This can be quite challenging when we are feeling stressed or anxious.
• Activity - engaging in activities of enjoyment, socialization, relaxation, distraction, and exercise all serve to reduce anxiety and stress. Get back to a hobby or try a new one out, spend time with a loved one, pamper yourself with a massage, hot bath, skin detox, watching a sunset, music or books, and get some physical activity. 
• Support - we can't go about life on our own. We all need someone to lean on for support. Utilize that person(s), that's what friends and family are for - to help one another. Reach out and find more individuals to add to your support system.
• Take Time For You - everyone needs downtime to relax. Sometimes it's hard to make time for this, but it is important. This time allows for decompression and recharging - both needed for tackling the next task you have.

Bye Bye Baby

The finality of spoken words are the hardest to push past our lips, to break our silence. Once spoken, the glass is shattered leaving us only with the reality that we are now forced to accept. In our silence we may delay the inevitable until our psyche is more prepared.
In Alone Together and Supportive Lengths, I spoke about a heart wrenching struggle that I've been slowly processing and gradually accepting.

I finally have reached a level of acceptance to allow myself to publicly disclose that my husband and I have come to the decision not to attempt to have any children.

This has been an excruciating and devastating decision for me. Through this process I learned that the best choice is not always the choice you want. Those close to me know that I've dreamt about Ending the Family Cycle through IVF with a surrogate and planned for this for over 15 years. I never believed anything different would happen. I maintained an unrealistic optimistic hope and pure belief that I would have a child in this manner and it would happen. There were no ifs, ands, or buts about it...it was happening. I planned out every detail I possibly could throughout the years. I planned names, nursery themes, educational opportunities, birthday themes, godparents and legal guardians if needed, parenting styles, etc. I've had my heart set on a baby and the joys and struggles of raising a child. And now, I must say goodbye to my baby. My baby, whom I will never get to see on an ultrasound screen, hear a heartbeat, feel kicking my surrogate, or hold in my arms because this baby will never have existed within the womb or in the world. I must say goodbye to it all, to my dreams, my hopes, my plans. The baby items I've slowly collected and saved for the big day when I would welcome home my own baby, I must pass these items on to a living baby, not a dream world baby. I know all the reasons to have a child and the joys that come with a child. I absolutely cherish the times with the children in my life and the memories of children I taught and cared for throughout my educational career.

 We must let go of the life we have planned, so as to accept the one that is waiting for us. - Joseph Campbell

In spite of all the reasons to attempt to have a child, there are a lot of reasons not to as well. After extensive contemplation and discussion, I find the reasons not to outweighing the reasons to in our situation.

1. The primary reason I sought sterilization was to be able to prevent passing FAP on to my child. I survived unimaginable experiences during my childhood and I can't bear the thought of my child going through the same experiences. To have a child is a personal decision and I hold no judgments over anyone's decisions regarding their family planning. This was my family planning decision. I didn't want to attempt having a child unless I could prevent my child from inheriting FAP. As I recently discovered as well is even with the genetic counseling and IVF, there remains a minimal chance that FAP could be inherited. Any chance is too large of a chance for me.
2. Another reason I sought sterilization is that I personally am appalled and terrified by pregnancy and childbirth. I don't know how I came to have this view, but both honestly repulse me. I find pregnancy and childbirth unnatural and a twisted joke from the universe. Cabbage patch kids type development makes much more sense to me. I know this is a very strange view for most people to understand and I don't expect anyone to agree with me. It's just my personal view and this view works fine for me as I am also medically terrified of pregnancy and childbirth. Due to my abdominal surgeries, previous twisted intestine around organs complications, low pain tolerance, and short bowel syndrome I truly believe, without a doubt, that if I were to become pregnant I would actually die or I would be in so much pain and misery that I would wish I would die. I don't want to risk my intestine twisting around organs again or if I required a C-section and risking my intestine to be cut or nicked. I have no intention of endangering myself and risking failure of my straight pull thru.
3. My current health, although stable, still provides for plenty of sick days where I don't feel able to move. How am I to take care of a baby when I have no energy, am running to the restroom constantly, experiencing high pain, or am unable to move very much? It isn't fair to my husband to expect him to take on the majority of caregiving for our child. I know he would but my child would deserve both parents to be involved. And with my health, I never know when the stability will end and my health will decline or when I'll die. I don't want to leave my husband to be a single parent with a young child.
4. My husband now has his own health issues as well with diabetes. Although diabetes is a very manageable disease and we are taking every effort to manage it properly, I still worry about his future health. He is also 10 years old than me. I don't find it fair to my child to have two chronically ill parents and I don't want either one of us to become a single parent with a young child.
5. Financially we have two options at this time. We can either use our finances to attempt to have a child; an attempt that may not work and still result in the loss of our finances. Or we can use our finances to start our life goals. We want to move to our land, build a small farm and small business. We can advance and complete these life goals at a much faster rate without first spending our finances on the attempt to have a child. With my husband being 10 years older than me, we are both ready to advance our life goals.

I began this disclosure a few months ago and since then, my husband was unexpectedly hospitalized with diabetes and my energy has been focused on his health and navigating through the terrain of diabetes, settling hospital expenses, and arranging care. I'm not sure if I've come to a full acceptance yet or I've been too consumed with other crises. A flooding of peace washed over me after a dream I had about having a baby. I dreamt I had one more attempt to try the process for a baby, a last ditch effort my psyche gave me. But even within the dream, reality seeped through and the plan failed. We couldn't accomplish both goals of a baby and our future life goals. I awoke in the morning feeling defeated with the finality of the situation. With all options exhausted, my mind was able to begin to rest and accept that we had made the correct decision for us. I am more at peace now than I was when I first started this post. I haven't been breaking into tears at the mere mention of childlessness or fertility issues. I still feel saddened when I prolong my thoughts about our decision but ultimately I am at peace and no longer debating the issue.

To help me obtain a sense of closure and to welcome in positivity for our future, my husband and I partook in a smudging ceremony. Traditionally, my Cherokee ancestors went to water for cleansing. However, we didn't have access to water and decided to participate in a smudging in order to regain balance and harmony within my spirit. I invited the talented and heart touching K. Talley Photography to help us capture this moment in our lives so that I may have mementos.

 

We began by lighting a fire and giving our thoughts to the universe. I lit cedar and sage and let the flame quell itself leaving only billows of smoke. With this I cleansed myself with the smoke before proceeding to cleanse my husband. I repeated this with a mixture of sage and sweet grass. The scent of the plants filled the air and swirled about before quickly being swept away by the wind. Once cleansed, we laid the smudging sticks within the fire pit to mingle with the smoke from the previously lit fire. We meditated on our loss and what the future held for just the two of us together. I was overwhelmed with a sense of relief and loss leaving me in a melancholy state.

I clung to the scent of the cedar, sage, and sweet grass for the remainder of the day. With each breath, I felt wrapped in a blanket of comfort from the scents. We treated ourselves to dinner and spent a quiet evening together as my mind reeled around the events of the day. It was coming to a close. I was filled with a hushed anxiety, it will soon be all over and my mind will rest in the finality. This is my last step, to disclose. To shed the façade of maintaining the intent for a child. To bear witness to my soul and our future.

To view the full gallery please visit K Talley Photography

Let Me Have It

It's been a rough few days for me in my new additional role as caregiver. My husband and I have been presented with  new challenges since his diagnosis of Type 1 Diabetes and I've encountered my own difficulty adapting.

I can't stop myself from thinking that it should have been me. I should have been diagnosed with the diabetes. What's another medical condition for someone who is already chronically ill? I'm much more adapted to handle medical conditions than my husband. I've had more practice, I've been practicing since I was 8. I'm already the patient, he's already the caregiver. He's a great caregiver, I'm a decent patient. Let me have it. It'd be much easier for me to have it, to adapt to it.
I hesitated for days to share these thoughts with my husband. They rambled through my mind, they weren't going to stop. I reluctantly shared these thoughts with my husband, I try to shield him from anything that I think could possibly make him feel burdensome or distract him with additional worry. Why? Because it's the nurturer within me, I don't want to add to his problems. He doesn't need to deal with my problems on top of his own. His unselfishness is beyond belief as he tells me I have enough to deal with, I don't need another medical issue and at least his is more manageable than my own. Perhaps there's a part of me looking for a different end game for myself than that which FAP brings.


Waiting for January 1st to roll around was hard, the date for his insurance to become effective and we would be able to fill his prescriptions at greatly affordable costs compared to the prices without insurance. The affordable prices though would have to come through the mail order pharmacy, which means increased wait time to receive the much needed medications. The hospital's diabetes nurse sent over his prescriptions electronically. Electronically is a wonderfully speedy innovation to quickly obtain a script. My only issue is that without a paper script that I can see, I can review and I can submit myself...well it takes more control away from me. My severe mistrust of providers and my own paranoia of what could go wrong in various scenarios has left me with a strong need for control wherever, whenever I can have it. I've had nurses submit scripts without my review that cost me large amounts of money, without providing the brand name or the correct number pills. A misfortunate experience as I couldn't refuse the medication due to receiving it through mail order rather than local pharmacy. Once it's delivered, it can't be returned with a refund. So you can imagine my mental hand wringing as I patiently waited to confirm the correct script was sent and received by mail order. Let me have the script.


But that's not the only nerve wracking challenge we'd encounter this week. When I called to confirm the insurance had been approved and scripts received, to my horror I was informed that his insurance is still being manually reviewed due to the late enrollment so close to the end of the year. I broke into tears while on the phone. Insurance means everything to me. Without my insurance, how would I have been able to survive my own health issues. I wouldn't be able to afford my medications, my medical care. My personal attachment and dependence upon my insurance left me paralyzed when we discovered my husband's insurance had been cancelled in 2013 and we hadn't received notices. And now, we had to wait even longer for his insurance to be approved. Sure, it would retroactivate to January 1st, but in the meantime I'd be faced with high out of pocket costs if his insulin were to run out before insurance would be approved and mail order insulin would be received.
Waiting is paralyzing. Waiting to find out if my hardship application for the hospital will be approved. Waiting to receive bills that don't have hardship applications available. Waiting to find out what we owe after it's all said and done. I'm scared to spend any money, even for essentials. Everytime I have to make a purchase, I think Will I need this for a medical bill we have yet to receive?


I just had to think of the additional issues that could surface, and they did as if summoned. That night, my husband informed me that his insulin would run out by early Tuesday. Not enough time to receive insulin through the mail, at the more affordable price. The insulin he currently uses would be too costly to continue, even with a future reimbursement for the out of pocket cost.


The local hospital pharmacy had called to send an assistance application for medications earlier in the day, before I knew about the rapidly approaching need for more insulin. But it's Friday night, my help options are running out. This is an urgent matter, it's urgent for my mental sake. I need this resolved and I need it resolved fast. I slept through the night with nightmares about our obstacles, my mind went through every possible scenario regarding insulin and insurance. Each scenario passed without resolution. I'd awake and it was on to the next attempt in my sleep to solve the issues. Every moment awake, I was terrified I'd forget to try outside of my dreams once the morning came. Now I had a mental to do list to maintain amidst the nightmares, the fears, the terror. Six hours this went on. Until I finally broke. I have used poetry as a therapeutic measure after surviving the nightmares of my first year following the first surgery. I hadn't written any poetry in over a year though. My  inspiration tends to come during the night, the time I'm desperately trying to sleep and I mistakenly think the inspiration will remain through the night and following day for me to listen. But it doesn't. My muse tries to teach me either I write then or I won't be able to write. This time I  listened and I wrote.

Mine Alone

My mind wanders, reeling with fears of the worst
Time passing slowly, dauntingly
If only life could jump ahead
Questions answered, solutions found, worries quietened

Strength tested and pushed to new limits
All that was known, turned and changed
Unfamiliar and trying, time is only sparingly vacant
Adapting, learning, struggling unceasing

Fear becomes all consuming whilst the mind wanders
The load weighs heavy to shelter my new charge
Mustnt show my lapses, must remain strong beats the song
Heart fights the battle, distracts the mind, and hides the difficulty

Are these fears shared with my charge, I dare not press
Guilt accompanies such curiosities, how dare thee ask
Shielding from extra burden, enough is there
This is mine to bear, a chance to return all the care

But it wasn't enough, I've been trying to maintain a strong face for my husband. My own fears keeping my heart caged, guarded, stifling my own needs to keep my husband's wellbeing safe. Or so I thought. The dam was failing, my muse had pushed me. I couldn't maintain my silence anymore. I hate waking him during the night, I hate robbing him of his much needed sleep. I had to share all my worries and risk him thinking I viewed his new medical status as a burden. I released all my emotions and wept in his arms. Panic began to set in as my mind took me to vials of insulin rather than flexpens. I can't give a shot. He gave me my B12 shots. Can he give himself a shot in the arm? The strength of a single thought is overwhelmingly powerful. One thought can push one over the edge. My mind began to spiral with that first thought of an insulin vial and  needle. Now a new panic is setting in. I can't breathe. Normally I feel like I'm having a heart attack at this stage. But I'm not. It's different, it's my abdomen not my heart. My stomach feels like it is twisting within me. I grasp my stomach, my husband grasps me to keep me from writhing in bed as I desperately try to stop the twisting. How is this happening, it's not real. Stop! I have to stop my thoughts, I can't do this alone. I can't handle the twisting. My husband distracts me with random stories and my mind begins to ease, the twisting reducing. With my fears quietened, the twisting stopped, my emotions drained, I was finally able to sleep without nightmares.
I was so exhausted by morning, I couldn't stay awake. I slept peacefully for six more hours, my mind exhausted, unable to function without some restful sleep.


By the time I dragged myself from bed, the diabetes nurse returned my emails about our dilemma and advised of over the counter insulin. This can't be a long term solution but it can get us through until the insurance is approved and the mail order insulin can be received. 1 vial will last about a week. If insurance is approved by Monday, I can get his insulin pens by the following week.


The damage was pervasive on my psyche, every moment waiting to receive any insulin tore my mind apart. We went to the local pharmacy. Time stood still as I waited my turn. Would it be available, would they be able to help me, would it be the affordable cost I was quoted by the nurse? Breathe, I reminded myself as I shook in line. It was my turn. The time slowly passed as the local pharmacist reviewed his current insulin to match to the closest over the counter insulin. Please, please just let me have it. I beg you. Finally, the transaction is complete. I grasp the insulin with dear life. I need alcohol swabs, I survey the shelves among the aisles. I can't find it, I can't focus. I stare blankly. Panic is setting in. I hastily walk up and down each aisle, scanning each shelf. It's not working. I need my husband. The tears are coming. I need the swabs. I need to take care of him. I need to see him okay, to see solutions, to see everything come together.


Once home with everything we need, I begin to relax, to think more clearly again. I begin to focus more. I know what I need. I need the insurance to be approved and I need our first mail order to be received. Then we'll be within that routine. I need a routine established. There's safety within a routine. Unpredictability to be lessened. Unpredictability is where you're caught off guard and rattled, where you're pushed and stretched, thrown to what you don't know, with uncertainties at every turn.


I notice the symptoms. The stress, the worry is weighing too much. I'm slipping. It's so easy to slip into that dark well of despair, of depression. It's been home for so many years. It's familiar, I know it. It holds me like its own. I know what I need to do to break free of its grasp. I know all the options to fight it. I've used them all, I advocate for them all. Medication, private counseling, support groups, informal peer support. But I'm also stubborn. I'm the last to agree to start using these methods in spite of my husband's regular urging. I try it out on my own for weeks first, leaning only on my husband for support. I don't want to become dependent on any of these methods again. I spent years mentally surviving only because of these various methods. I want to survive on my own. If I can't, if I must depend then I will but not until I prove to myself I can't climb out on my own. I struggle, I fight, I push.


I think back on my own health struggles. The times I was left to fight for my life for the second prolonged period. Was it really a struggle? Was it this hard on me as the struggle to see my husband safe is now?


The memories blur over time. I remember two feelings during that time. Peace and terror. Peace came to me while I was near death. I'll never forget the serenity of being in death's arms. There is no earthly peace like that of death. Nothing as comforting. Sweet, sweet death.
And then I remember the terror. The terror brought on each time I endured, I survived a medical test or procedure. Being ill doesn't seem so bad. It was the pain that the tests and procedures inflicted that was so hard, that pushed me closer to death's arms.


I question my memories, why is the stress so much more now. Why do I almost recall my fight for my life as easy, as peaceful except for the pain. Stress. That's why. My only responsibilities during my own fights were to live and to complete my studies. I didn't have to work to live, my parents had me, they caught me financially. Now my parents would do what they could to help us, but they wouldn't be able to support us financially. I have to work, he has to work. We have to financially survive too, not just physically. There's more at stake than just physical life, it's our livelihood.


Isn't it interesting how the stage of life we are in at the time affects what we experience, how we cope, what we focus on, what our needs are. So much is affected by this, it shapes us, it changes us. How lucky I was to struggle during an earlier part in my life, when I could easily be caught by my parents. When my livelihood wasn't mine to stress about. When I could just focus on surviving.

Supportive Lengths

In Alone Together, I shared my own struggles with disclosure of private information and the heartfelt pain that accompanies keeping secrets. This is a matter that is ever present in my life at this time and likely will be so until I'm able to obtain closure. Closure, something that I thought only would come with a final decision and announcement. But as my heart and mind weigh heavy and I'm brought to tears at least once a week, I'm realizing I need more than that. Sometimes we need a lot

I tend to overanalyze everything. I ponder, question, and mull over information, thoughts, feelings, and questions for hours, even days at times especially when I'm overcome with emotion. It is exhausting and we can only do it for so long before we finally give up - either accepting or no longer caring about what originally made us care so deeply.


I stopped the thinking. Instead I listened. I listened to my spirit and my spirit let it be known what is needed for that closure.

I shared this with my husband as I will need his participation. My darling husband is too good to me and is one of the most supportive and caring individuals I know, even if he doesn't always show it to the outside world. A couple weeks ago I told him that I wanted to have a private incense burn for cleansing. This week I expanded, I need a full smudging, not just some bits of sage thrown into a fire. I need to go through the actions and cleansing one another and because I am a very tangible, commemorating type person, I need it photographed. I need the visual reminder to further flood my memory and senses with that moment of shared release and love. A flooding that I will be able to grasp when I need that sensory reminder.

And after I shared with my husband what I needed and he dutifully, without hesitation agreed. I realized the supportive lengths our loved ones, especially our caregiving loved ones go for us. This cleansing is more for me than for anyone else yet I need my husband's participation, I can't reach that sought after closure that I so desperately need without his participation. I can't. It won't happen alone. And without me even saying that, he knows it. How are caregiving loved ones know us so well.


The things we need to finally feel better, safe, relaxed, at peace are sometimes very little and others are big and sometimes they don't make sense at all, particularly to someone not in our situation. With our disease, we have ample opportunities for much needed support and help.

When a loved one takes the time to share what you mean to them and to let you know you're not alone in your struggles.

When a loved one brings you a meal that isn't from the hospital cafeteria, when you sink your teeth into something you can't possibly get yourself and your tongue tastes the flavors of a home cooked or restaurant cooked morsel. Your heart sings and you instantly melt into a pile of gooey delight, forgetting where you are and what's wrong.

When a loved one gives you an item and you cling to it through your tests and procedures for as long as the medical staff will allow, when touching that item seems like the only thing that can ground you and make you feel a bit safe, a bit comforted through the stress and fear.

When a loved one tends to your affairs and your home for you as if it were their own because you're too weak and fatigued or worse, in the hospital again. The security of knowing your home needs, your belongings, even your living treasures are being looked after and the relief of the stress of managing survival and home needs.

Such are precious bits of support that fill us with gratitude, actions that touch our hearts and spirits with their gifts of relieving stress, providing security and comfort, sharing pain and happiness. We ask for such support without even asking a lot of the time. As sickies, we often share a common sense of guilt and stubborn pride. Guilt when we receive the support and help we, in reality, do need and a stubborn pride that keeps us from asking for all the support and help that we need.
With all the commotion related to our physical and mental health, we are ever so grateful but it's easy to not grasp the full supportive length a loved one is willing to go for us, particularly when it's not questioned and even when it's not spoken but just known that you need this length or that length.

To not be questioned about the rhyme or reason for why this length is needed over another length, this is a gift in itself as well. This is the gift of love.


I hope you have such a person in your life. These individuals are a gift and as much as they understand you, your needs, your situation and your difficulties...be sure to let them know amidst the commotion, you appreciate all their efforts and willingness. Odds are, these individuals also see you as a gift in their life.
After all, without this shared love, at the very least our struggles would be much greater and their lives would be much less interesting.

Accepting Help

Sometimes it's hard to share with others when we're experiencing health issues and when we do, sometimes it's hard to accept help from others. If you're like me, I'm appreciative of the offers to help but I don't think about how others could help me. I'm fiercely independently dependent. I'm reliant upon help from my parents and my spouse yet accepting help from others doesn't come naturally for me and even obvious suggestions don't come to my mind easily. Even now during recent health struggles, friends are offering to help me out. Only, I can't think of what one could do to help me outside of just talking to me. Sometimes you have to hit someone over the head to get them to accept help. Perhaps I would be more open to concrete, specific offers of assistance rather than general offers, haha.

In high school when I had a central line for TPN for six months, I couldn't get my central line wet resulting in the inability to take showers. I had to cover my central line with plastic, I then kept several hand towels over my central line and then kneeled over the tub and washed my hair under the faucet. My parents helped me with this usually, although I could manage by myself. It wasn't until shortly before I had my central line removed that the suggestion of going to a salon and having my hair washed was presented. And with that concrete suggestion, I went with it and it was absolutely heavenly. I was able to relax, have my hair washed thoroughly and without pain of my central line pulling with my arm movements. All for a small fee of $5, it was one of the best $5 I spent. And to think, I could have accepted someone else's help six months before even if it was just occasionally intermingled with my own efforts.

A friend of mine is having back issues and was needing help with transport to a doctor's appointment and childcare during the appointment. Again, it didn't cross my mind that others outside of my parents or spouse could or would be willing to go to appointments with me. I simply scheduled any medical tests with my parents' schedules in mind so that one could go with me. Even as an adult, I still want someone to go with me when I'm undergoing any medical tests or procedures. I just simply don't think someone should have to go alone and frankly, the thought terrifies me. I don't think anyone should have to face medical tests or procedures alone.

Despite how hard it may be for us to accept help from others, especially others outside of our health circles, it can be a wonderful thing. Typically, if someone is offering to help you out it's a genuine act of care and they're concerned about you. And let's face it, sometimes we really do need some help...even if it's just a shoulder to cry on.

National Cancer Survivor Day

Happy National Cancer Day to all you survivors out there! What are you doing today to commemorate your victory? It's hard not to look back and think about the time since fist diagnosis and treatment. It may have only been a short time for you or perhaps, like myself, it seems like a lifetime ago.
 I tend to forget about what I've been through, what I've survived, until reality provides me a sharp reminder. Reminders can be beneficial though. We can be reminded of where we've come from and where we're going, what we need to do to continue surviving and enduring. How we can help others through their battles. What we're made of, the strength and fight that's within us and coursing through us. What motivates us and what ultimately can heal our wounds.
Regardless of how long it's been since sometimes we lose sight of it all. Often times we either can't escape the past or we try to outrun it. Stay in the present, remember the past and where you've come from but don't live there. Be proud of your endurance but still take preventative measures for your continued health, take stock of the emotional and psychological trials you've gone through as well so that you may begin to heal.

And every so often, when you need it most, make sure that you do the following, because you deserve it.

Job Stress

It's been awhile again, I know. I apologize. The drains of work at times, more frequent than not, are overwhelming. With changes and added responsibilities requiring later nights periodically and the fear of increased frequency has been wearing on me.

I remember my health struggle just to work. My doctor told my parents when I was a child I could apply for social security disability and I'd have a good chance of approval. My parents never did, they wanted to see what I could handle first and knew even if I had to one day, I may still require their assistance throughout life. And so that's what we did. I tried my best and they helped me along the way. And with the help of my schools I made it through that struggle. Sometimes having to be homeschooled others home study with the public school. But I made it through. And I made it through college in spite of a minimum of two hospitalizations a year. My next challenge was a full time job. Would I be as fortunate?

I worked for six months, that's all my body would allow after school as it threatened to send me back to the dreaded hospital. I was so scared for my health and if the future. The stress caused severe SBS, reminiscent of the SBS struggles in high school when my life was nothing but restrooms, pain, and ever looming death. The time when I felt death's hands on my shoulders and I felt urged to prepare my parents they were losing their little girl. I could see all this once again on the horizon. My parents agreed I had to stop, they would help me. Just after a few weeks away from that first time employer, I felt my health returning. I wanted to try again. Maybe it was the job, the employer or that it was my first full time job and I had yet to develop the right coping for this arena. I'm not sure, maybe it was all of it. But I tried again and I did better the second time. I didn't have to travel anymore and for awhile my employer was supportive and helpful. Even when it became hostile and I was overwhelmed with depression, my body withstood all the stress being thrown at it. I was amazed and relieved! Maybe I do have a fighting chance after all.

And so I've been with my current employer a few years now. I still have bad days that my body warns me to take easy and so far I've been supported. But that fear always remains. What exactly is the limit, when will I be pushed too far, when will my body rebel and force me to that dreaded hospital again? I don't know, I don't want to know and so I keep my guard up and I try to protect myself from myself.

The Non-Sick

I'd group people into the following categories to describe their frame of reference for understanding chronic illness and empathy.

1. The Sick. These are people with chronic illness, not with bowel disease though. This group can relate to us with bowel disease because they too understand chronic illness. This group is usually very empathetic toward others with health issues and have a medical understanding.
2. The Bowel Sick. This is our group of people, all with some bowel disease. We relate to each other better than any others with health issues. Again, we tend to emphasize with each other a lot.
3. The Non-Sick with Empathy. This group doesn't really have any health issues but sincerely want to understand what we go through. They may or may not have any medical understanding, but are willing to learn. Someone with empathy doesn't require medical knowledge in order to empathize and often have tendencies to have a basic understanding simply due to their inclination to empathize and imagine what life is like for someone with illness. This understanding also tends to be present for not only physical but also emotional symptoms and effects.
4. The Non-Sick with No Empathy. This group doesn't really have any health issues or experience and don't really care to sincerely understand or learn about our conditions or that of others. They may inquire but it is usually due to etiquette or to satisfy curiosity.

 I don't really have any patience for the non-empathetic non-sick and dealing with this group is highly vexing for me. I don't mind and even typically enjoy educating others, answering questions and helping to better understand and support others in their lives. But when a person doesn't have any interest in such things and only feigns interest for their own hidden benefit, I don't really care to answers questions. I don't want to be a part of their games or help them in their games. I also don't really care for such people to pry into my life and know details of my health or my day to day health and symptoms. So it's no surprise that I have very little patience and a short fuse with such people.

I don't have the energy nor the patience to teach an adult how to empathize or how chronic illness affects one mentally, emotionally as well as physically, especially when it's not a sincere interest. I'd rather maintain my privacy and steer clear of my health as topic of discussion. I've encountered several people like this and I don't trust individuals with such behaviors. There are people who will use knowledge about someone's health and chronic illness to manipulate the person, others involved with the person or a situation with such personal information. We must especially be weary of this with employers. Recently I had an individual ask about my PTSD and they didn't understand how I could have PTSD now when my physical health has been stable. This person was also trying to use my health as a tool for religious debate and manipulation. So I'm confident that this person belongs to the last group. It doesn't take a psychologist to understand basic tenants of PTSD as long as they know a summary of what PTSD is.
 Simply, PTSD is the mental effect of a traumatic event causing an individual to have depression and negative stressful symptoms that are triggered by the trauma experience being relived. Such symptoms include night terrors, severe anxiety, fear, flash backs, emotional numbing and avoidance. Most people have a basic understanding of PTSD due to the prevalence among war veterans. Therefore, I find it hard to believe that an educated, aware adult doesn't have any reference to PTSD to draw from, especially if that person has a capacity for empathy.

My PTSD symptoms have subsided in frequency and severity over the years due to counseling and medication treatment. I don't believe that an individual ever truly stops having PTSD, just that symptoms can improve as well as better coping mechanisms may be learned and utilized. Although my health is fairly stable now and I don't have as many regular invasive tests and procedures, when I am placed back in that medical environment and those situations I begin to experience those same PTSD symptoms that I've had before although now I'm better equipped to cope with the situation so that the symptoms aren't as severe or debilitating as they were previously. But I'm never rid of it all and sometimes without provocation I begin to have symptoms again. I have to be cautious of what I watch, read, listen to and even what I think because I am easily transported back into time to any one of those traumatic medical experiences and am reminded of it all again. If I'm not cautious, I'll quickly be reliving the traumas. I'm so in tune with the pain and those memories are etched into my mind so deeply that seeing or hearing others' pain is physically felt on my body.
I also believe that one is never truly free of depression completely. A person may stop having depression but I've found that after having depression, one is much more susceptible to have depression again at a later time when under duress. I've found this also occurs with suicidal tendencies. Once a person has become suicidal, even after no longer being suicidal one is much more likely to experience suicidal ideations when under duress. It's as if once that those doors are opened, they're easy to open again even if not intentionally.

I acknowledge that these can be difficult things and notions for others to understand.    Chronic illness runs in my family but it's still hard for my parents to understand how deeply I've been affected by my health even though my parents are better able to relate than most. My husband has a hard time understanding my morbidity, how warped my mind has become due to such traumas. Yet they empathize and support, they listen and they show that I am understood and accepted. A close friend with similar health issues probably knows me best as he better understands the mental effects during his years of medical traumas than anyone else I know and is as warped as much if not more than myself. Most people have capacity for empathy and if they don't you are better off befriending someone who does. Without empathy, there isn't room for a true friendship - only a one sided benefit.

Happy WOD!

Today is World Ostomy Day to raise awareness of ostomies, bladder and bowel disorders or dysfunction. So happy World Ostomy Day!

There are so many new groups that have come together since I was a child. When I was 9, I knew 2 others with ostomies. My parents started taking me to the local ostomy support group to try to help me cope with all I'd gone through that year. I was the only young person and was absolutely the only child that attended the support group meetings. At age 11 I went to the youth rally and for the first time met other children with ostomies and similar health issues. It was absolutely amazing and helpful, I enjoyed being a camper until I was age 17. I attended the local support group meetings periodically until the support group was disbanded last year and attended several years of the UOAA and YODAA conferences and enjoy the UOAA discussion boards as well.

For years these were the only support resources available. Over the last couple of years various additional awareness campaigns and groups have started as social media has increased allowing for widespread information, advocacy and support with fewer obstacles. With all the access to others with similar experiences, you never know you can reach out to or who will reach out to you. These are amazing developments with powerful results. World Ostomy Day is another part of this new era of ostomy awareness and every new way to raise awareness is important, to think outside of the box is essential as the world and the way the world communicates changes.
What are some of your favorite ways to raise awareness and celebrate life?

Medical Angels and Demons

I had another routine follow up with GI doctor this week and had great results. I've been taking my B12 regularly for 3-4 weeks now and my B12 jumped from 400's to 800's! It's in the top third of the normal range, I'm not sure I've ever had such a high B12. Course, I don't really notice any difference when my B12 or hemoglobin is low, it all feels the same to me. While visiting with my doctor during my appointment, we started talking about that 1st year of surgeries and previous and future doctors. In my last post I shared about my experiences with my 1st surgeon and the treachery that accompianed him. During my appointment I learned some new information that I didn't remember or know about the medical demons that continue to haunt me. My second complication from my 1st surgery, when I went to the ER for stomach pain that actually was caused by my intestine twisting around itself and surrounding organs my surgeon was actually out of town and it was the 3 residents alone that decided that nothing was wrong with me and told me and my parents that I was merely a "whiny child".  This doesn't change any of my thoughts or feelings regarding my 1st surgeon but it reinforced my contempt for the 3 residents. It is because of these residents that I don't trust any resident. To add insult to injury, when I returned again to the ER after that incident and adequate testing was completed to discover the cortortion and emergency surgery was required as it was a miracle I hadn't died during the night from the lack of blood flow. The residents were aware of all this and no statement to my parents was made, no apology that it had led to near death and could have been prevented, no indication at all that these residents had any compassion or understanding for what I had gone through under their care. If they had completed a thorough assessment and testing the 1st time, my complications may never have progressed to such lengths and my years of pain may have been avoidable. But I will never know. My conversation with my doctor reminded me that although I am safe from my 1st surgeon, I don't recall the names of those 3 residents and am at risk of accidently becoming one of their patients without properly protecting myself by being able to recognize their names. So I am requesting my medical records so that I may discover their names and avoid them for my life.

Just as these individuals have allowed and created lifelong anguish and mistrust in medical providers for me, there are a few medical providers whom I deeply trust and respect. I do not easily trust medical providers and this last year I realized that this mistrust and apprehension about new providers has generalized even to dentists. I trust one hospital and a handful of doctors, these are my medical angels.

My GI doctor, who I have known since I was 8, means the world to me. I feel safe under her guidance, she is compassionate, understanding, and extremely knowledgeable and in fact is one of the top pediatric GI doctors in the state. She was the only female in her medical program and she is near 90 now. In the summers she invites me over for swimming and figs from her trees. She is protective over me and goes to great lengths to protect my physical and mental safety, which is why she continues to follow me when I am almost 30. She has promised if and when I am forced to become followed by another GI, she will thoroughly brief the my new doctor about my history, present, medical and psychological needs. Whenever she requested for another doctor to perform testing, she has physically been in the room to oversee the testing and provide me peace of mind as I know that if she is present, she will oversee my care and protect me from harm. She is very dear to my heart and I trust no other doctor like I trust her. There really aren't enough words to describe how much she means to me, how much I respect and trust her, and all the care she provides me.

My 2nd surgeon was an incredible surgeon. My only sadness is that he is a pediatric only surgeon and he won't be able to perform any future surgeries I should need. He has phenomenal medical skills and outstanding compassion for his patients. He understood my fears, my mistrust, my fragile psyche and he gave me hope and support. He was patient with me and also took great lengths to ensure my comfort. He was the surgeon that performed my last 2 surgeries. After my last surgery, I asked him if he could "knock me out" by ordering me Finnegan to be given when my NG tube was to be removed. I had undergone such pain and misery that year from extensive, unceasing medical tests and procedures, hospitalizations, symptoms and near death. I was on the edge, mentally exhausted from it all and not having to endure the pain of the NG tube removal would help to ease my mind and my body. He told me "I'll order you something better". And he did. The only problem was, the nurses didn't give me the medicine. I told them I needed the medicine my surgeon ordered, the nurses told me that there wasn't anything ordered to "knock me out" and I either could have the tube pulled then or wait until they could get an order, which they said would take several hours. I was so angry. I hated my surgeon in that moment. The words that he didn't order me any such medicine burned in my ears, stabbed my heart, and wrenched my soul. I trusted this surgeon for almost 2 years, I believed him when he told me something. He betrayed me, knowing the betrayals I suffered from my 1st surgeon and his crackerjack team. How dare he! I agreed to let the nurses remove my NG tube without any medicine. As every time in the past, the NG tube made my esophagus, throat, and nose raw with pain and I cried and screamed from it all. Once the tube was removed, I thrashed in my hospital bed for hours. I was overcome with anger, hate, pain and I couldn't stop the screaming, the words I yelled at my surgeon, willing him to hear me, the uncontrolled sobbing that went on for hours until I finally collapsed from pure exhaustion and a pained body from it all. My mind could not respond any other way. My mother tried to comfort me. I couldn't be comforted, the man I thought was my hero surgeon had lied to me and betrayed me. Oh the psychological harm it had done to me. He LIED to me!
The next morning my surgeon visited me. I told him I hated him, he betrayed my trust, he knew all I had endured as a child. He listened to my rant and didn't say anything until I was done. He apologized to me. He explained that he had ordered the medicine but the hospital pharmacy didn't carry the medicine and he wasn't informed so until after the NG tube was removed and the nurses told him how distraught I had been. He explained that if he had known the pharmacy wouldn't fill the medicine he ordered, he would have ordered something else. He explained this quietly and kindly, not a hint of defensiveness in his tone or body. He didn't lie to me, he had tried, he cared. My heart sank with this new information, I had genuinely hated him without real cause. Instantly my mind was began to repair itself from the previous day's anguish and became stronger again knowing that I could still trust this surgeon, I hadn't been betrayed.
There aren't many doctors that will listen to a patient release their emotions and kindly apologize and explain the mishap without defensiveness or blaming the patient but instead continue to provide compassionate understanding.

My anaesthesiologist in high school was also so kindhearted. My GI doctor knew how safe I felt this this anaesthesiologist that whenever I had to have a medical procedure or surgery that required anaesthesia, she scheduled my procedures for when he could care for me. To this day, she offers to do the same for any procedures I have to undergo. Another example of just how amazing my GI doctor is! My anaesthesiologist is a very funny man and uses his humor to help relax his patients, distract them from the procedure they're about to undergo and carefully monitors them. He knew about my difficulty with local sedation, that I've become immune to locals and require general anaesthesia and my fear of waking up again during any procedure. He provided reassurance that he would not let me wake up during a procedure and made certain I was comfortable as I could. I am forever grateful for his care, as every little bit helps to reduce the agony that medical issues brings.

My gynecologist is another medical angel. I didn't like my previous gynecologist, I never felt comfortable with her and questioned her competence. Early on I knew I didn't want to have any children myself, I knew I wasn't meant to become pregnant or give birth and with good reason. There are so many risks for someone with such abdominal trauma to undergo pregnancy and childbirth. The intestine can wrap around the uterus, the intestine can rupture, can't take the medications that are so necessary for daily functioning just to name a few. I knew in my heart of hearts that if I were to become pregnant, I would most likely die and if I didn't, I would wish I had. Mentally and physically, I wouldn't be able to take the pain and the threat of such risks. I definitely wouldn't be able to take it if the threats became reality. After my last surgery, I decided that if I ever had to have surgery again that I would opt to have my tubes tied at the same time. I wouldn't choose to have the surgery by itself because I had already gone through enough surgeries and didn't want to go through another one. But if I was having another surgery anyway, I might as well have this one at the same time. In graduate school I found out about the Essure Procedure and this is what I had been waiting for all my life. You can read more about it at the website, but basically it is an outpatient procedure and tiny metal coils are inserted into each fallopian tube. Anaesthesia isn't required although you are given a light sedative, a relaxer and pain pill as the cervix has to be opened. After about 6 months, scar tissue builds around the coils to permanently block the fallopian tubes thereby preventing pregnancy forever! I researched the procedure, the results, the risks and felt confident this was a great option for me. I searched for a local Essure trained doctor. I had little hope that there actually would be a doctor in my area but there was! I called that day to schedule my appointment. I was only 23 and knew that some doctors would refuse to perform a sterilization procedure for someone so young who hadn't even had any children yet. Realizing the potential obstacle, I had my speech prepared, more like my plea, on why I wanted the essure procedure and why the doctor should perform it for me. When I arrived at the office, I felt like I had chosen the doctor well. She voiced her concerns about my possible regret and I pled my case. She was very understanding and realizing my commitment to not becoming pregnant, agreed to perform the procedure for me.
I met my now husband a month and a half before my sterilization procedure. After 2-3 weeks of dating, I told him what I was about to embark on and I told him that he needed to decide if he wanted to stay or if he needed to exit because I wasn't changing my mind for anyone or anything. Without hesitation, he told me he was staying and would support me in whatever health decisions I made for myself. This said a lot to me about my now husband's respect for others and respect for women's healthcare.
My gynecologist and her clinical staff were very understanding about my medical history, my anxiety and fear of any pain and the trauma I've endured and were thus extremely supportive and eager to provide me reassurance and to reduce my anxiety. The procedure was very painful, although it wasn't the worst pain I had ever experienced and I was determined to make it through to the end of the procedure.
I thought I would have fertility issues even if I did want to become pregnant because I've had health complications that increase infertility, all the adhesions in my abdomen and pelvis, fluid in my fallopian tubes (my medical team never could find out what was going on here), I had a fistula on my tube or something similar. My gut instinct was right, one of my fallopian tubes was blocked shut!
After my procedure, I decided to become a permanent patient of this gynecologist and I've never regretted it. She understands the GI issues I have and how they relate to my reproductive system and supports my healthcare choices. I actually look forward to my annual exam with her as my doctor!

Even though there are medical providers whose incompetence have permanently scarred my psyche and risked my life, there are also providers who have my best interest at heart and make every effort to protect my health and safety. It is because of these medical angels that I'm doing as well as I am today.
What are your experiences with medical angels and demons?

Outlets

Having as many outlets as possible for support, shared information, and ventation is essential for surviving difficult situations such as trauma, health issues and crisis, and other life altering events.

As a child, I only knew two others with an ostomy and those were family members who had ostomies for the same reason I did - FAP. It was bad enough to have severe chronic health issues and undergo life altering, self image assaulting procedures and experiences but it was also difficult feeling alone in my experiences as I didn't know anyone else my age or anyone beyond my family members with similar experiences, period.

My parents started attending a local ostomy support group for myself and theirselves as well, I was connected with a group for children with bowel and bladder diversions and my parents gave me great strength to endure. I survived those tough years in spite of bullying by classmates that didn't know anything nor cared to try to understand what I was going through.
As a young adult, I remained active in my local support group and became more active with the national ostomy association and maintained close relationships with others with similar experiences.

Even this blog is a therapeutic outlet for me. I work in the medical field with chronically ill persons and there are times that I want to share my experiences with my clients or coworkers, but I don't. Sometimes it is frustrating when my clients make statements such as "You don't know what it's like, you're healthy" just because I don't have the same disease as them and currently am the healthiest I have been since a child. I'm not there for my own therapy, so I keep the boundaries clear. But this blog allows me to speak about my experiences in another outlet. Plus, I'd like to write a book one day and this is also helpful for documentation.

After I started being bullied in 6th grade, I was filled with an intense hate and resentment not only toward those bullying me but also in regards to my health. For a few years I tried to cope on my own without much success. Through the support of others, I was able to start accepting myself and my health. It is very hard to mentally survive such traumas without adequate outlets. Through these outlets I survived it all and have gotten to meet and form incredible relationships with many amazing people. I am a much healthier person, physically and mentally because of these outlets.

What are your outlets and how have they changed your life?