Alone Together

We all have things we don't feel able to share with others. We usually have at least one person we feel able to share almost everything with. And others we designate to know certain things we wouldn't with others, such as our fellow sickies know details others don't but are still left in the dark about our other secrets. And then there are secrets or topics only shared amongst two people, not known for the public.
So are we ever fully known by someone else? Are we ever not just alone together with our secret keeper?

That's how I feel lately. My husband and I are currently making decisions for our future that I don't yet feel able to announce as we are not in the final stages of decision yet. But I also don't know how to breach the subject with others yet to even let others in. And this weekend, as we draw nearer and nearer to being required to make our final decisions...the more it's hitting me. I hadn't released any major emotions attached to this matter as we made our unofficial decision together. Yet this weekend I have been flooded with emotions, crying spells, and grief. I don't believe I'll change my decision but the finality on a matter, particularly a delicate matter, can be heartbreaking as you close the door on other options. Saying goodbye to anything hasn't been my strongest skill.

And so, I'm alone together with my spouse. Caught in a perpetual limbo until a final decision is reached and allowed to be made known to others. Even then I feel confined to our secrecy, how to randomly tell others, many who likely don't really care yet I remain pulled to make known what is a huge part of our lives, a major decision for us.
Most who know me, likely think it's a matter I already have figured out and many who likely don't understand my stance at all - past or present but instead made their own judgments and assumptions. I did have everything figured out. But with life information changes, people change, circumstances change. And so our plans, dreams, and hope change.

This is an universal struggle. How many things have you struggled with disclosing to others? Things that another may or may not need to know yet you needed to let someone know. The pain of holding the information, the attached emotions within yourself almost bursting through you. The need to be understood, for empathy and support as you make your way through a difficult time, a difficult decision, and the difficult aftermath. We all need someone to share our experiences with, someone to help us through to the other side.

I hear this struggle within others in the forums. Especially related to close relationships with others. How, when, and whom do I tell someone I have an ostomy, my health condition, etc. A struggle we all understand and there is no right or wrong answer. We can tell all, we can tell none. It's within our rights, our power to tell whatever, whomever, whenever we want. And yet, we often remain in a secluded state. Fearful of reality, of others' judgments and misjudgment, of the unknown, and finality that disclosure brings. A finality that may or may not be in our favor. A finality that may be painful and heartbreaking. A finality that closes the door on other options.

Perhaps it's not really the disclosure we hide from, but the finality, what it means and brings that we are so timid about discovering. There's a loss with finality but there often is a gain as well.
Prepare for losses you may have, but also prepare for the gains and once you've found a place of peace...make your disclosure as you feel needed. Step away from being alone together into being together with others. It's okay to take your time and to feel right with your disclosure and your timing. I'm working on this presently and when the time comes, I hope you'll be together with me during my disclosure.

The Worry Wart and The Carefree

Twice in one day I had two different people tell me that they worry about me and my health. I appreciate the care and concern of others but I don't hear the literal words" I'm worried about you" often. So infrequently so, it actually sounded strange. And in that moment, I asked myself why and do I even worry about my own health.

I suppose I do worry but not in the conventional way. I don't think about my future health very often. The only time I truly feel like I worried about future health was when I had my ostomy and was desperate for a reversal. I thought and worried about my future health and hope for a reversal opportunity everyday during those six years with an ostomy. I think of death often, however, the only concern about death I have is pain and outliving my husband. Otherwise, I feel ready for my time. I don't recall worrying about future health even during my worst struggles to survive. I didn't have the energy or strength to worry. And then it just...became normal.

I find myself worrying most about my activity ability. I worry days, weeks, even months ahead of time about activities I want to participate in but am at risk of not being able to complete due to how my body may be acting at that time. For instance, I've been worried that  my body will interfere with my hunting chances this weekend and my excursions on my cruise in 8 months!

There's always so many variables to consider in relation to food, drink, short bowel, and restroom access. I must be careful of when, what, and how much I eat or drink before, even up to the night before, an activity or I may suffer from short bowel, cramps, and pain.
But even these worries have become second nature as I proceed with strategizing my day around the activity and demands it will place on my body.

I've said before, I could be considered to be in a place of denial, resignation, or acceptance about future health and health risks. I did, however, request to restart the Sulindac in efforts to reduce polyp growth and aid in management of my degenerative disease within my neck joint. Perhaps I'll even undergo another scope or MRI with contrast in the next few years again! I probably should worry more, but at this point in my life...I just don't have it in me.

Worrying is just exhausting though. We can worry ourselves to death with unceasing focus on our risks. It's all a fine line we must try to balance. Between taking care of ourselves and not dwelling on the problems and risks. Yet most of us don't balance, we lean or fall to one side before we pick ourselves back up to try to walk that tightrope once again.

What do you find yourself worrying about? Are you a worry wart or are you carefree with your health and future health?

Wish List

Do you remember the last time you felt normal, even for your new normal? When those days are so far apart, it's hard to remember the last time you felt good without any symptoms bothering you at the moment. I long for those days. It's usually one thing if not something else. It's rarely ever just a feel good all around day. Such days happen so rarely that my mind doesn't register it for a while, I'm so accustomed to experiencing pain of some sort that when pain is absent, it's almost unrecognizable. Those days are to be cherished. Those days are on my wish list.

I first had this thought this weekend when my eye must have gotten an irritant, that I haven't been able to find, in it as it's been painful, watering and even sensitive to light for 2.5 days now. But little did I expect my wish list to require an adjustment.

I've previously discussed my neck issues that have plagued me all summer long and what becomes the norms of our chronic illness here. This morning I had my physical therapy follow up after doing so well last month prior to a couple neck flare ups over the last couple weeks. I brought more of my medical records for my therapist to read. While discussing my body's inability to absorb nutrients, I learned a few things that have left me devastated today:

1. My body's impaired ability to recover from injury, even something slightly strenuous such as walking
2. The damage to my neck has resulted in a chronic condition and although several factors contributed, the fact that I was improperly performing leg lifts was a large contributing factor. Which means to me, I did this to myself. I caused my neck injury and now I will have to live with it for the rest of my life.

I'm well aware of my inability to absorb and maintain nutrients, I've been fighting this the majority of my life. But I never thought much of my recovery ability or recovery period. It makes sense, it all connects, but my attention has never been drawn to it. With my health issues, my body takes twice as long to recover from anything. Because of this any type of exercise I do participate in, I need to cut in half and double the recovery period in between increasing the amount because my body can only take small amounts of strenuous activity. Again, makes sense. This is why I do well with activity such as Yoga, Pilates, and Tai Chi when my stomach will allow participation.

This extended recovery period also applies to my neck injury. Although I can achieve a decent level of comfort, I'm not able to make all the symptoms disappear. Even during the best week I've had this summer, I could still tell that there was something wrong with my neck, although minimally bothersome. And so, whenever my neck becomes agitated, it will take about a week to recover. This whole time, I expected my neck to recover and that would be the end of it. I never once let myself imagine that I would have a new chronic condition. I'm used to all the negative symptoms that the FAP has caused, I deal with it. I don't know any different and I'm prepared for what's likely to come down the road with the FAP. But the news of chronic neck pain for the rest of my life has thrown me into a self pity crying party as I grapple to adjust to this concept. I wasn't prepared for a new chronic diagnosis and the symptoms. My whole life centers around FAP, not other health issues and especially not other chronic conditions. And perhaps, what makes the coping harder is that I blame myself. If I had never started the leg lifts, I probably wouldn't be in this position or at least not this soon in my life. If I had only known the risks, I never would have started the exercise. I take health risks with my FAP and the cancer returning and I own that. I don't take polyp growth reducing medications and I refuse colonoscopies. But I know the risks I'm taking. I know that when my cancer returns, I'll most likely find out later in the game than if I would undergo colonoscopies again. That's a risk I'm willing to take at this point in my life but I know about it.

It's something else when you don't know the risks and engage in a behavior/activity that causes you great harm because you didn't know the risk or didn't think about the possibility. You become consumed with the "what ifs" and I'm so angry with myself right now. I'm angry and I'm devastated. I'm hurting, physically and emotionally.

And so I'm going to practice what I preach. I'm going to have my cry out but I will do my best not to live there. I will add minimal neck pain days to my wish list. I will cherish the days I feel good and I will recognize those days. I will hold onto the hope for those days. At the end of the day, we need that hope to make it to the next day and a lot of hugs along the way really help too.

A Preoccupied Mind

I read the posts of newly diagnosed FAPers and I can almost hear the panic and fear in their written words. And it makes me realize I've never really been that concerned with the future risks and cancer parts of FAP. My attention was focused on my desperate need for my ostomy to be reversed. Even when near death, my only concern was if I could have my ostomy reversed.

I've grown up in the medical field and perhaps that's part of being diagnosed as a child versus a young adult. As a child, you take things in more strides than an adult in some ways because your child mind doesn't comprehend the fullness, the vastness of it all. That can be a blessing. I'm fully aware that I'll have cancer again, maybe a few times even and I'll likely die from cancer. Although I'm still rooting for a quick heart attack haha. But I'm not preoccupied with this reality. I'm not even overly concerned with my health symptoms even though they dictate all of my decisions and daily activity. What to eat, how much, when, where and when should I plan a restroom break, can I walk that far, do I have enough medication and supplies, should I sit or lie down, and so forth. But that's my life and it has been for years.

I'd say I'm in part denial and part acceptance. Amidst my awareness of future risk, I still refuse colonoscopies unless under my terms. I know that's not good and although I likely don't have a tumor in my abdomen at present, I know it's a possibility that I could wake up to any day but I could find out later in the game because of my testing refusals. And at present, I accept that. Perhaps it's my own death wish at play. That and my stubbornness.

I've been pretty lucky in a lot of ways. In spite of nearly dying several times and years of misery, my health has stabilized. I haven't developed any desmoid tumors and I'm very grateful for that. I've even miraculously been able to stop taking Lomotil for the last 2.5 months. I carry lomotil with me as I never know when or if my intestine will decide this is only a trial run to forgo the lomotil. I'm hoping the unexpected trial will be a permanent change but time will only tell as my body likes to make random changes of varying time periods.

I have to stop myself when I have the urge to think chill out with the newly diagnosed. It is a scary thing and it's not a pleasant disease. We all cope differently and our experiences with this disease are all different. The effects are different from person to person. We each find what works best for ourselves through a trial and error learning process and with the help of others. My coping would have been very different if I had been able to be exposed to others with FAP outside of my family.

Just remember, wherever your preoccupation resides try not to become consumed there. Do what you need to live and cope with it to get by but at the end of the day, don't let the preoccupation be your only focus. I've lived like that for years and it took a heavy psychological toll.

Zebras and Ducks

Anyone with Familial Polyposis is already a rare individual. National Registries show FAP occurring in 2.29-3.2 per 100,000 individuals. And if you're anything like me, this rarity is only the beginning of rare health issues.

My GI doctor has for a long time, quite accurately told me that:
 "You look like a duck, act like a duck, sound like a duck. But actually, you're a zebra".
She couldn't be more correct. She tells me that there's no reason I should have the severity of stomach pains, bloating, severe malabsorption, and issues with rich foods that I do. She has stated for years that I would be a perfect case study for medical students because I'm not your textbook example of a FAP patient, what is typical is never typical with me. Everything is the opposite. Doctors check your abdomen for a quiet gut, they actually shouldn't be hearing constant gurgling. However, because I'm always the opposite, my doctor knows that if she doesn't hear steady gurgling from my abdomen, I'm in serious trouble.

It's not uncommon for health issues from FAP to lead to other problems. And it makes sense. With years of malnutrition, other parts of your body are at risk. My neurologist and my physical therapist don't know what caused my bulging disc but my malnutrition issues, past and present, definitely have further complicated my neck issues as discussed in my previous post. Since my last post, my physical therapist diagnosed me with an ALAR ligament sprain and told me this is a rare occurrence and his first in his 20 years of experience. Seriously!? Well, go figures. Why not, that makes a total combination of 4 different issues with my neck - disc, joint, muscle and ligament. I'm pretty sure that the only thing left is for a broken bone. Ha. My neck issues change rapidly, improving and worsening without warning. And due to the constant unpredictability, my physical therapist has joined my GI doctor on the zebra train and now refers to me as a lil' zebra. I can't help but laugh, it's only the truth.

Being a zebra in a world of ducks can be frustrating. You don't really fit in, medical providers don't really know what to do with you, you're more likely to undergo much more testing and procedures in efforts to rule out what normally would be the cause of symptoms, more treatment methods you have to sift through in a trial and error basis. In spite of all the frustration, there is a positive side that the ducks won't experience or contribute to the medical field.

When you are a zebra in a duck suit and you have good medical providers, they can be armed with this knowledge to look for the stripes instead of the feathers, to remain open minded to alternative answers and explanations and to consult more with others in their fields. Consultation is beneficial to all involved - increased understanding, awareness and opportunities for learning and different treatment approaches to complex health issues.
So embrace your zebra stripes. I've learned to wear my zebra stripes as another badge of honor. Nothing makes me smile quite as much as when a medical provider, like my physical therapist, declares "There is nothing normal about you".
Nope, there isn't. And that's what makes me so special, within and outside of my medical issues.