Thursday, January 29, 2015

Treatment Choices

Individuals share a vast depth of life views of varying degrees that include differences of opinions and needs regarding medical decisions and choices. I find this to be the beauty of the human experience. We have been given the gift of free will and decision making.


So in medical situations, how do we know what the right treatment choice is?

With any medical diagnosis we are typically presented with treatment choices and we must decide what is the best choice for us. Even when all factors are the same among individuals, a particular treatment option may not be the best choice for another individual.

Life experiences, spiritual beliefs, world views, prognosis and current health all contribute to the medical decision making of an individual. There is a lot to take into consideration to determine the best option for a particular person. It's common to see others within the health groups asking about others experiences with various treatment options for FAP as they debate the options provided by the doctors. Learning about the experiences of others, knowing what to expect with each treatment option is a great way to gain more information than a doctor is able to provide.



I didn't know anyone else outside of my family with FAP when I was a newly diagnosed child. I don't think the different treatment options of ostomy, jpouch, straight pull thru, etc. were discussed with me. I was 8 and I can understand why I wouldn't have been included in the discussion. However, as I grew I regularly inquired regarding other treatment options to reverse the ostomy I had been left with after serious complications courtesy of my surgeon. My quest for a different solution was understood by my doctor and when the opportunity to give it a try became available, my doctor and my parents left the decision to me. I was 14 when I started preparation for an ostomy reversal with a straight pull thru. I knew the risks, a reversal may not be possible and with any surgery there are always risks of death or other complications. Fortunately for me, my parents and my doctor respected my desire and my need to take the risk. A reversal was all I wanted, it was all I had thought of for the previous 6 years. I think my doctor and my parents realized the depth of my anguish and despair, I had to take this risk or I would never be happy not trying. Following a successful reversal, I was faced with several years of torture trying to maintain my straight pull thru due to adhesions. There were times I was ready to stop the fight for life. There were times when I knew my body was about to give out on me and I said my goodbyes to my parents. I survived through it all though.

And when I look back, I wonder...if I had said to stop the fight and let me rest, would my wishes have been respected? Would I have been given the same respect and support I needed for my previous medical decision if I had made the treatment choice of not receiving treatment?

I hope my parents and my doctor would have respected my wishes. I believe everyone has a point when too much is too much to ask anymore and a person knows what that limit is when the limit is being reached. I believe in freely making our own decisions and respecting that.

I am filled with terror, mental paralysis, and I experience a rapid heart rate with the mere thought of being forced to undergo a medical treatment I did not choose, like the young lady court ordered to receive chemotherapy. I've spoken about a very dear, close friend of mine who committed suicide due to his experiences with Fibromyalgia and Ulcerative Colitis. I wish that he hadn't taken his life, I miss him everyday and I will forever cherish the time we shared and memories of him. I, however, cannot be angry with him, I cannot resent him for his choice. I wish his choice had been different and I wish we all could have helped him more. But I understand the desperation, anguish, and pain that he must have been experiencing that he tucked away. And because I understand, I can't do anything but miss him and wish I could change it all for him. I am not by any means saying that had I been aware of his decision to commit suicide that I would have encouraged him to do so. I'm simply saying, I understood his struggle. And that's something everyone benefits from, to be understood.

I've been blessed with fairly stable health over the last few years and I hope this will continue. When my health changes once again, I'm not sure what choices I will be faced with or what choices I will make. All I know is that there are choices that I don't want for various health conditions and I am counting on my wishes to be respected. I completed an Advanced Directive with detailed instructions pertaining to my wishes many years ago and I regularly discuss my medical wishes with my family.

Medical decisions are never easy and living with those decisions isn't always easy either. There will always be risks and side effects of any medical decision we choose. We have to know what we believe is the right choice for us.

Thursday, January 15, 2015

Lessons Learned

I love reading the lists of others about what they've learned from illness, things others should take into consideration about others with illness, or things they wish they had known first. Fortunately, not everyone knows what it's like to live with a chronic illness. Not only do these lists help others better understand what we live with but they also help us by reminding us of our strength, our knowledge, and the forgotten lessons that have helped shape us and make us unique.
I think it goes without saying, again, that one lesson learned by any type of chronic illness is that we reach a whole new level of appreciation and cherish of the good times, the good days we have. So I'll move on to my lessons learned.

1. Chronic Illness Changes You
There's no way around it. The degree of change is affected by your age of diagnosis/symptoms onset, treatments and experiences you've had, support received and so forth. I'm not sure what I would be like if I didn't have FAP, I was diagnosed so young that I don't have a grasp of who I was before. There wasn't time for a clear change. But there are views I have now that I don't think I'd have without FAP and the accompanying experiences.
  • I wouldn't be terrified of pain. With everything I do, I think about how to avoid or minimize risk of pain.
  • I would take more risks in life.
  • I would likely have been a veterinarian. This was my passion as a child, until I became sick. Ever since my first surgery, I can physically feel the pain of others just by others talking about their experiences, seeing painful events, imagining pain. I can't bait a hook without feeling the bait's pain of a hook going through its body.
  • I would be more independent. I am extremely dependent on the emotional support of my parents and I found that same support with my husband.
  • I would be more trusting. I don't trust medical providers easily due to experiences with my 1st surgeon and his residents. Providers have to prove to me first that they aren't trying to kill me and that my needs and fears are understood and respected before I feel comfortable.
  • I may have been open to moving. I felt unable to leave my home state, my parents and my doctors due to my unstable health. I turned down opportunities to study abroad, marrying military sweethearts, out of state schools, careers that would have required relocation.
  • I would travel without excessive worry, I love the thought of exploring the world yet my health needs cripple my adventurous spirit due to the demands on my body and the demands my body has.
  • I would likely have engaged in the typical teenager behaviors and rebellion. My health, my ostomy, my fears of others finding out my secrets...it quite truly kept me out of trouble.
  • I wouldn't struggle with depression or have a death orientation. Perhaps I wouldn't strongly support euthanasia. Maybe I wouldn't overly empathize with someone's wish for death, even suicide.
  • I wouldn't be morbid. I actually take great pride in my morbidity. I love the perplexed, startled reactions by nonsickies and the camaraderie of morbid thoughts and humor shared with other sickies.
  • I may not have anger problems. I've lived with true hate, resentment, and anger stemming from the incompetence of the surgeon and residents that led to life threatening, life altering complications.

2. Extreme Polarization of Life and Risk Taking Behaviors
We all cope differently, especially when presented with trauma and life changing events. The way we cope I've found falls into one of two categories. Either the person flirts with death to the point of recklessness, taking every challenge or risk available in order to live life to the fullest and get the most out of life. Or the person becomes paralyzed with fear and the need for safety, rarely taking risks, calculating every move out to the last detail in order to minimize risk. I definitely fall into the second category. I'm paralyzed with the fear of any type of pain. The risk of physical or emotional pain is almost unbearable for me. There are a lot of things I'd like to do or to try but I won't because the risk far exceeds the activity for me.

3. Redefining What's Trivial
Have you ever listened to a relatively healthy person complain about something and all you can do is chuckle to yourself? Not to be rude but I have.
When others complain about having to take medications, I can't help but chuckle. I've been responsible for taking my own medications and carrying them with me everywhere since I was 10. I have taken extremely small and extremely large pills with several doses a day. I'm such a great pill taker that I typically take all of my pills in one gulp.
I thought my professors overreacted when I would notify them that I'd  be in class that day but I had to be hospitalized after and  I wasn't sure when I'd return to class again. Each time they asked why I needed to be hospitalized and why I didn't go right away, I truthfully answered that I was bleeding internally again. They would urge me to skip class that day but I didn't budge. Waiting 1-2 hours wasn't going to make a difference, I might as well get that class over with, get my homework and get packed and cleaned up for the hospital so I'd be more comfortable and less stressed about school.
A friend of mine became accustomed to his stoma prolapsing and it wasn't unusual for blood to fill the front of his clothing. He didn't understand the horrified looks of strangers noticing his bloody clothes.
Such things are routine for us, they're our new norms. I'm sorry that our norms confuse and shock you and I'm sorry that your confusion and shock makes us giggle.

4. Living Your Life Impresses Others
Every time someone finds out a bit about what I've survived and what I live through daily, I'm given some type of congratulatory, awe inspired response. And I never fully understand it. Don't get me wrong, those with chronic illness survive some really rough cards in life and that is a thing to be celebrated. I am by no means poo pooing what someone lives through. But I don't see myself as doing anything special, I'm just living my life the best way I can just like everyone else. Because I'm just living my life, although I appreciate it, I often feel embarrassed when someone pays me complimentary, congratulatory, awe inspired words. I don't feel like I deserve it really because I don't see myself as a strong person or anyone special just for living with FAP and the complications it has caused, that's just my life.




5.  You Lie Everyday
The whole "but you don't look sick" deal, it comes about even more because we're master deceivers now after living with chronic illness. How often do you answer with an "I'm okay" or "I'm fine" when asked how you're doing but you're really thinking "I want to die right now, my stomach hurts, I don't have any energy, it hurts to walk, and I'm about to break into tears at any moment" but you don't really want to spill all that for various reasons. Only those who really know us or are perceptive to others realize when we're really not okay in spite of our protests. I do this everyday just about. My family has gotten really good at picking up when I'm lying about how I feel. They know if I'm not really talking, I'm not smiling and laughing, I'm just sitting there taking up space and I'm curled up in a chair, hand on my stomach...I don't feel well at all and I really just want to curl up in a ball even though I'm answering "I'm okay".

6. Your Body is Your Enemy
Your body isn't your friend, your body betrays you at every turn possible. Your body often hates food and only wants to sleep. It doesn't like you having fun, participating in activities, or doing what you want. It fights you and sometimes you pay for going against what it wants.
The "Keep your friends close but your enemies closer" rings true with your body. We know our bodies better than anyone, we are forced to learn what our triggers are and to anticipate the body's reactions to what we do. With a rare disease such as FAP, it isn't uncommon for the patient to know more about FAP than the doctors because not many are very familiar with FAP.

7. Spontaneity is Rare
There's so much to take into consideration with everything we do it becomes hard to do anything spur of the moment. For me to participate in activities, I have to plan out when and what I'm going to eat. I have to take into consideration where restrooms are located and if they're not available, what is my back up plan. Even intimacy often requires forethought, talk about a mood killer. And even when you've taken every precaution you can in order to participate in an activity and you think it's all working out, it's not and you have to change the plans at the last second.

8. Proof of Illness is a Real Pressure
Chronic illness isn't always visible and symptoms can change in an instant and can change back again in another instant. The roller coaster ride of the illness leaves us feeling like we must prove our illness to others. I worry that my friends think I'm just ditching them, my boss thinks I'm lazy or I just want an early day or weekend, or doctors will think I'm seeking attention or medications. I want to be taken serious and I do my very best in everything I do but sometimes my best isn't a lot. I worry that I'll be fired or doctors will turn me away.

9. You Will Be Discriminated Against for Life
At no fault of your own, you will be discriminated against throughout your life from now on. It may not happen on a regular basis but it will happen. It may not be a large act of discrimination either. Your needs and your health will be dismissed. I've had hateful notes left on my car for using my handicap placard. A friend of mine has been denied assistance  with boarding a plane even though he requires a walking cane. I remember an ostomate was banned from a hotel for his ostomy leaking onto the bed sheets during his sleep even though he voluntarily paid for new bed sheets. Doctors dismiss sometimes, writing us off as attention seeking, medication seeking. My primary care doctor, first surgeon and his residents, and the ER staff at my local Children's hospital all dismissed my health and my needs and it nearly cost my life.

10. Health Will Never Be Taken for Granted Again
You not only gain a brand new, deep appreciation for good health and good days but you also gain a deep anger and concern for others when they ignore their health. We all know someone who refuses to see a doctor in spite of complaints of an ailment. My husband would complain of various ailments but never would go to a doctor, he always had an excuse and he was healthy until he developed Type I diabetes and landed in the ER after a blood sugar of almost 1000. He was lucky he didn't die. Within the medical field, I encounter countless individuals who have not managed their diabetes or high blood pressure resulting in kidney failure. It's one thing to know the risks of foregoing medical care and it's another to refuse care with the thoughts that you're invincible. When others complain of serious, ongoing ailments yet refuse to consult a doctor, I am filled with a sense of anger and desire to shake the person. As a sickie, we know that not every symptom can be shrugged off and symptoms can quickly turn serious and deadly. It's best to take care of a health issue  now before it turns into a larger issue later. Save yourself pain, hassles, and higher costs.

We learn countless things, big and small, everyday with chronic illness. Sometimes it takes us longer to learn and accept lessons. Life is a journey and chronic illness is a forever changing teacher. The more willing you are to learn, the better you will adapt to this journey.
What are some of the lessons you've learned courtesy of your chronic illness?


Sunday, January 4, 2015

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.


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.