Friday, December 19, 2014

When the Roles Reverse

caregiver life's a polyp

This week has been a whirlwind of scares and changes that I wasn't prepared to encounter.

My husband has been pretty healthy his whole adult life and hasn't seen a doctor for anything in over 20 years. Complete opposite of us FAPers. Everything changed this week in an instant, starting with a phone call early Tuesday morning.

After a couple months of excessive urination and thirst resulting in a long battle with severe leg cramps, he finally agreed to get lab work on Monday afternoon. Tuesday morning my doctor called us and informed us that his blood sugar was almost 1000 and he needed to go to the ER. We found out that day that he was Type 1 Diabetic and he had been without insurance for the entire year yet we had never received any cancellation notices. With insulin dependent diabetes, he would be required to find a new job within the next few months.

We had no doctor or insurance for him, about to be without a job, and were accruing plenty of medical bills for this serious new diagnosis. We were in a nightmare situation and the light at the end of the tunnel was growing dimmer at every turn. I was terrified of so many things that were happening and could happen yet I was the caregiver now for the first time and I needed to remain strong and calm for him. He didn't need the extra stress of worrying about his wife going to pieces on him while he was at risk of a diabetic coma or death. What a different role, from patient to caregiver. Everything was on me and I didn't know what to do.

Unexpectedly our luck began to change. My work allowed me to enroll him on my insurance for his coverage to start January 1st and the hospital gave me a large discount for making a relatively small payment up front. His employer was making accommodations to keep him employed. Now I just needed for him to become stable and for me to find a way through the next month until he had insurance and a doctor. By early afternoon, I was no longer fearful, I was strong and determined. And on an adrenaline rush. Nothing and no one was going to stand in my way. I was energized but that can last only so long when you're splitting yourself between various responsibilities. I spent the day and evening tending to him, tackling our issues, returning to work, and taking care of household needs.
By Wednesday morning, I no longer had the energy or the adrenaline that sustained me during the chaos of that first day. I could barely function mentally but I had a lot to do at work and it hurt to be away from him. I knew that I had to take better care of myself or I'd need a caregiver myself if I weren't more careful. I turned my focus to the evening, I had to get more sleep before rising early again to visit and help my husband with his morning routine. I needed to prepare for a new battle that day. How was I going to be able to afford his insulin and supplies before his insurance started and how was I going to have enough supplies to last him until we were able to obtain an appointment with a doctor?

I recalled all the time my parents and family members took care of me, of the time my mother and I were both hospitalized at the same time. How did my dad do it!? He worked, visited us, and took care of the house and land. I now knew how exhausted he must have been. How exhausted they all must have been.
The worry and the need for a plan and a safety plan were starting to become overwhelming as I tried to resolve every issue the best I could. I worried about his health and his mental health, the adjustment required to transition from caregiver to a  new patient is a lot for an individual as well. How was he doing, what did I need to do to help him adjust and to keep him motivated for his health as well?
My mind thought back to all of those who have helped care for me, they must have felt as helpless and overwhelmed as I did. As a patient, we feel so sick at times that we can't spend our energy on the same things as our caregivers. Our bodies need that energy for healing and survival. We barely have a chance to process our health changes and situation before we're thrown to the wolves of the illness and what is required for self care. And so our caregivers are left with all the worry and to also deal with our own adjustment issues yet we barely notice. So often our caregivers only show us their battle faces, not their exhausted, terrified, overwhelmed with emotion faces.

The universe smiled upon us on the last day. We received education from a diabetes nurse who helped us navigate what we needed and helped us obtain that much needed doctor appointment. She has remained with us as well as one of his ICU nurses. They're only a phone call or email away if more guidance is needed. I no longer feel alone in navigating the terrain of diabetes. We have a long journey; but we are well supported and well guided.

In the matter of 3 days, our world turned upside down and resurfaced different, but upright. At the end of it all, I've been left with feelings of intense gratitude toward so many people and for the favorable outcomes we found when we weren't entitled to such favorable outcomes. Not all situations are so lucky. We were fortunate to obtain resolution so quickly for so many issues. And I can't help but think, if it weren't for my own health issues that have shaped myself and my life in so many facets...I wouldn't have the same fortitude as I needed to complete my role in our crisis and maintain my new role as caregiver.

The struggle between patient and caregiver roles are real and they deserve our attention. We must draw on our strengths and our support systems to help each other cope with the changes in roles. Together, patient and caregiver can do a lot but not as much if separate.
Show your caregiver appreciation and allow them their much needed time without our demands. Communicate with each other and discuss what each one needs. This is a partnership and it deserves both people.

Wednesday, December 3, 2014

Supportive Lengths

 life's a polyp

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 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.

Wednesday, November 26, 2014

If Only My Doctor Knew...

if doctor knew  life's a polyp

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 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.

Monday, November 10, 2014

Alone Together

together but separate  life's a polyp

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.

Wednesday, November 5, 2014

The Worry Wart and The Carefree

worrywart carefree life's a polyp

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?