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.

Curve Balls

Energy is a funny thing. It changes rapidly, without notice. And yet, even at our lowest we somehow manage to summon enough strength and energy to at least do the bare minimum of what's required of us. And then we collapse.


I've fought with energy on various levels since my colectomy that left me requiring iron and B12 for the remainder of my life. Even with iron medication 3-5 times a day, I have yet to reach a normal hemoglobin level again since that first surgery. With the use of daily microlozenges, I've achieved and maintained above average B12 levels.


And yet, my energy is just as much of a roller coaster struggle as it has been all those years ago. Oddly enough, even in my sickest years 8-12 years ago when all I could manage was to complete my studies and my work hours, there was an abundance of times that I remember as having more energy than I have now. I don't feel old, I'm only 29 and yet when I look back on all the various activities that took up every moment of my days for years, I become exhausted just thinking about it! I can't even force myself to maintain as busy of a schedule as I did 6 years ago!


At my very worst, I went to school and work only and I slept every chance I had. At my best, I worked part time, attended school full time, attended sorority events, college activities, and family gatherings with energy to spare. I went out three nights a week with friends, staying out until 3-4 in the morning and rising again by 7 am to start the day all over again. I don't remember resting any except for during the very worst times. I realize my memories become fuzzy after a while, not just due to age but more so as an effect that is associated with my PTSD and coping mechanisms. My energy must have been at higher levels during those years. Otherwise, how did I participate in the various activities demanded of me?


Presently, I am astounded by myself when I am able to participate in activities of chores, hobbies, or social outings after work anymore. Most nights I come home after work and veg on the couch, recuperating from the events of the day. My sleep cycles further affect my energy levels. Increased energy when I'm able to sleep and lower levels during sleep deprivation periods. I question how I managed such full schedules just a few years ago, I'm amazed at what I was able to accomplish on a daily basis. Even a year ago I engaged in more activity by balancing a full time and part time contract job. Now the thought of even PRN work makes me groan with exhaustion. It takes a while to face the truth sometimes. Things we don't want to admit, things we want to blame on our illness but some things we just can't lay at the feet of FAP.
 Slowly I've come to realize that yes, I did have more energy when I was younger and whilst FAP and my health drain my energy daily, I also have a depleted source of energy due to aging. Oddly, this has been a test of acceptance for me. I didn't want to admit that I'm already experiencing normal aging process. I still look incredibly young for my age and within my mind, I still see myself as 26. I actually forget I'm 29, getting ready to stare at 30 in just half a year. I'm accustomed to bothersome symptoms occurring as a result of the FAP, not a normal process that occurs to healthy individuals too.

Living with a chronic illness complicates any situation and blurs the lines between normal and abnormal. So often it's difficult to distinguish the cause of a symptom as related to our illness or related to normal processes. With these blurred lines, it becomes further difficult to notice "normal" symptoms versus the abnormal symptoms that fill our world that we have become accustomed to as a normal reality. Our minds flood with multiple questions in an attempt to identify the source of symptom changes. Is our health declining, is this a flare up, is this to be expected, is this a sign of something worse, could this be an additional condition? It takes us years to adapt to FAP and the associated issues, years of learning what our new norms are, how and what affects us, what is required to recuperate. In spite of our expertise in how our bodies work, a curve ball always presents itself. We become masters of the curveballs, juggling them with our typical issues; adapting, coping, growing...surviving.


A curveball isn't always big, they come in small sizes as well. Regardless of size, they throw us for a loop when we're least prepared for the change. Grab hold of the curveballs and throw them back at life. Prepare yourself the best you can for the next one that is heading your way.

When the Roles Reverse

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.

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.

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.