If Only My Doctor Knew...

Most of us have things we don't completely share with our doctors. Things you don't worry about and don't find necessary to disclose. You get to a point where you know you're fine but you don't want to rock the boat with minor details or you don't want those minor details to make you not fine. You find your balance, when you know you're beat and you have to fess up to your doctor for help and when you can let it slide and it'll work itself out.
Case in point, my doctor freaks about some things. Granted, some are understandable. Some I tend to disagree with and let the information slide.


She's strongly against her patients eating sushi or getting tattoos due to risk of bacteria and infection. Now I won't get a tattoo but I will not give up my sushi. And so I keep that to myself and we're both happy...me with a tummy full of sushi and her thinking I'm not at risk of food poisoning from sushi.


Every visit my doctor asks me how many times I use the restroom. I've learned over 20 years, if I tell her 6-8, she doesn't like it but accepts it. I never actually counted, I just made a rough guess and learned that 8-10 times a day answer caused my doctor freak out and talk about having an ileostomy again. For both of our sake's, I stick with the 6-8 story. But then one day, I actually counted for a full 24 hours. And if I told my doctor that my average 24 hour period is 15-20 bowel movements...she'd really, really freak. I'll go back to an ileostomy when I feel it's needed, not before. And honestly, I'm ok with my 15-20 bathroom trips, I'd rather have that than too few and feel constipated and bloated.


Another frequent question she has is how many bloody stools do I have. It's hard to tell because it's not a regular occurrence but when it does happen, it doesn't worry me. I've learned that if I don't or am unable to use the restroom for a long period, my intestine will become irritated and bleed. It typically lasts a few hours, always less than 8, and it's over. Only today has me a bit worried to be honest. I've been having bloody stools for 24+ hours now, I don't remember this ever occurring for such a long consecutive time. I'm not rushing to call my doctor though, I'm going to try to let it slide. But yes, if it continues for the next 4 days, I'll call my doctor on Monday and fess up. Because I will have to admit that 5 days of constant bleeding is a problem. For a couple reasons I'm really hoping this will stop before Monday though so I won't need to share this bit with my doctor. I'm pretty sure she'll make me have a scope if she knows about this and I don't want this to be a regular question/concern to discuss during visits.


An instance I don't think I've ever actually told her is that I get overheated rather easily, particularly more so since the last year. I've gotten where if I'm inside during winter, I'm usually hot. When I'm over heated, I enter a daze where it takes a lot of effort to walk or talk, I'm sweaty and clammy, I feel like I've entered a tunnel yet my vision is fine. It takes about 3 hours before I feel normal again after this happens. This has happened twice this month and the last time I discovered that my blood pressure and pulse rate were both high. A nurse advised this could be caused by dehydration. The overheating happens regularly yet infrequently enough that I've never thought to tell my doctor. But now, I'm curious about the blood pressure connection and I'm even wondering if my blood pressure fluctuates often without knowing it until I'm overheated.


My next visit is in February and so the dance of  picking what I find necessary to disclose and what I will let slide will occur once again. We shall see how the dance turns out.

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?