Alone

When do you feel as though you’d most want someone next to you during a time in your life? Having a life-threatening illness would definitely rank right up there. You’d think when you’re told you have a disease that has the distinct possibility of killing you, you’d be surrounded by loved ones, feel the love and support of those closest to you, and you’d have to turn down visitors because you’re too sick to visit everyone that wanted to see you. When someone tells you they’re taking chemotherapy, you instantly picture cancer and think the worst. You’d definitely picture that person getting calls, cards, visits, prayers, maybe visits from their pastors, and they would know and feel they were loved and know that everyone wanted them to survive. I mean, knowing a loved one was on chemo would tell you how dire their situation was, right? Chemo is a very heavy medication for very deadly diseases, right?However, not everyone on chemo has cancer. Surprising, I know. I’m one of the many on chemo with a life-threatening disease that isn’t cancer. And I’m ALONE.

There are many of us out here, struggling to get through our day-to-day routine with a life-threatening illness ripping our bodies to shreds, with chemo trying to kill what’s left. Chemotherapy is used as a treatment for several other diseases besides cancer, most of them being autoimmune diseases. We suffer the same side-effects from the chemo as those with cancer – we are on the same chemo meds as those with cancer. I’ve lost my long, thick, brown, curly hair, I have absolutely no appetite (unless my body immediately demands something weird like mango popsicles), I suffer  inopportune nausea and vomiting out of nowhere, normal foods taste like metal or medicine, and I get gigantic bruises just from my dogs putting their paws on my leg for a quick pat. However, my family and friends know I’m not taking chemo for cancer, but for a strange disease no one has ever heard of or knows anything about, so I guess in their minds, it’s not CANCER so it’s not deadly. And since I’ve been sick with chronic diseases for about 20 years now, this new disease of Granulomatosis with Polyangiitis (GPA) is no different than my chronic kidney failure, so they just don’t see me as “sick”. And therefore, I really don’t feel as though they think my health is that bad and visits/calls/texts/cards aren’t high on anyone’s list.

I have felt extremely alone, not important to people, and it’s not something you can just bring up with people in conversations. For one, you are extremely ill and making the daily effort to get from the bed to the couch is a highlight of your day’s activity. You see your day broken up into sections of: take handful of morning meds, get out of bed, possibly change clothes if you have clothes-changing-energy-reserves, hopefully have the stomach for a piece of toast, figure out energy-reserves needed for toast-making, etc., you get the picture. And that’s just the first 2 hours of your day. Trying to figure out how to have the conversations with family members about deep-seated emotional pain over being forgotten or left behind is just not high on your list of daily survival. Surviving a disease that its sole goal is to kill you ranks higher on your list every day, and so you put off thinking about your emotional pain at being last on people’s list. But let me tell you – it hurts. And you don’t know how to say it.

Having GPA means your autoimmune system – your own BODY – has decided that your blood vessels throughout your entire body are evil, foreign invaders and your immune system must destroy them. So your body has even deserted you and has begun attacking the very vessels that bring life-giving blood to every organ system in your body. That means that every organ is fair game to GPA – it had greatly damaged my lungs, kidneys, heart, stomach, nerves, hearing, eyesight, intestines, thyroid, brain, and more. Right now the only organ I know that hasn’t been affected is my liver (just knocked on wood), but the chemo can help ruin that organ system itself. You have to realize, chemo is POISON. For someone’s health to be so seriously damaged to the point that the only choice left to keep you alive is the POISON of chemo, that should tell you how sick your family member is. If you tell someone you’re taking chemo for cancer, it somehow seems loads more serious to them than if you’re taking it for GPA. However, before chemo was found to be a treatment for GPA, 90% of GPA-sufferers where dead within a year. 90 percent of those with GPA died within a year of diagnosis. It’s a death sentence without treatment. Does that scare you now?

I don’t feel I have anyone to call when I’m down. I don’t have alot of people that check-up on me on a consistent basis. I don’t really get texts or calls or cards or e-mails even. I also don’t know how to tell anyone how alone I feel or how sad all this makes me. I KNOW my family loves me, I know they’re busy with their own lives/problems/families/jobs, and I know that I haven’t picked up the phone in awhile now, either. I guess you get sick, you get down just trying to live on a daily basis, and you don’t want to bother anyone. So you sink deeper into your illness and exhaustion.

My husband has been my true angel. I honestly could never have made it this far without him, and God knows this is true. I would not be here if it wasn’t for him – he’s kept me living and breathing on the toughest days. He’s been my rock, my laughter, my smile, my sunlight, and my reason to keep trying. He’s held me at my worst, gotten me whatever I needed or wanted (sometimes a girl just needs a Pumpkin Pie Blizzard), taken care of me at home or in the hospital, been with me at appointments, and has been more understanding than anyone I’ve ever met. Without him, I. Would. Not. Be. Here. Period.

Yes, people have taken the time to check on me. I am grateful when people just take the time even to text a short, “How are you?” You honestly don’t know how much a chronically-ill person needs that! We need it more than you’ll ever know. When I hear about a famous person that is ill, you see thousands upon thousands of posts and messages of prayers and well-being for that person. How many of those people are contacting sick friends or family members around them? Coming from little ‘ol nobody me, you just may make your friend’s or family member’s entire month by reaching out and saying hello.

The Dark Hours

“The human spirit can endure in sickness, but a crushed spirit who can bear?” – Proverbs 18:14

No one wants to hear about the dark hours.  The hours spent inside your own mind, where you look back at all you’ve done, or not done, all the time you’ve spent wasting specks of your life as if you had all the time in the world to keep on living.  The hours where you contemplate the meaning of being in this universe at all, wondering what was so special about yourself to begin with that God would plan out your very milliseconds eons before you actually arrived here.  The hours when you hear about others seemingly giving up the battle we call Life, deciding it wiser to put a period on the end of their life instead of living each minute of “The Dash”….you know, the time between your birth- and death-dates (for me, it’s 1973 “dash” ? at this point)……and you think, “Wow, good for them….they took their pain and at LEAST made a decision to do something about it.”  Even if that “something” was ending their own life.

No one wants to hear about the dark hours.

And for us sickies, those hours can get daaaaaaaarrrrrrrrk.  For those of us with chronic illnesses, there doesn’t seem to be any end in sight to our suffering.  We’ve been handed a very drab road trip, given a Ford Pinto to ride through life in, and no one handed us a freakin’ road map.  Sickies like me spend most of their time realizing on a minute-to-minute basis that your life is no longer anything you wanted it to be, you are now in the fight of your life just to keep existing, nobody knows how to approach you any more (not even your own family), and you feel as though you are a tattered flag in the wind, praying to be wind-whipped right off the Life Pole.

See, when you first get diagnosed with chronic, degenerative illnesses, everything you do has a purpose.  I have symptoms – must see a doctor! Check. Doctor ordered tons of tests – must get those ASAP. Check. Doctor calls you in to tell you the fabulous news of your Chronic-Illness-of-the-Week Sample Platter – must begin treatments and medications and rituals (oh my!). Check.  Looking in the mirror on Day 687 of the struggle for your life – aaaaaaaaand you no longer know who is staring back at you in that mirror.  And you don’t care to know her anymore.  And you don’t tell your wonderfully caring husband just how long you stared at that bottle of pills today.  And you no longer feel any deep-seated feelings of ANYTHING about life anymore, because you mentally checked out many, many moons ago.  You realize, staring at the stranger in the mirror, you only E-X-I-S-T – you no longer live.

When you’re living through an extremely extended period of being ill, you MUST find a new life for yourself.  You cannot stare blissfully at your friends’ Facebook pages, looking at their vacation photos basking in the Tahitian sun and think, “I’m going to work hard, save, and book a trip to Tahiti next year!”  You see event invitations pop up here and there, and you know that getting dolled up and partying the night away hasn’t been in your card deck for quite some time now.  You see your family members get together, call each other all the time, meet for dinner, go on trips, have family holidays, and you ponder to yourself just how many days would go by before any of them realized they hadn’t talked to you if you were gone.  No – in the World of Sick Chaos – you can only muster enough shreds of your Healthy Self to keep yourself living, breathing, taking your meds, and existing one more day.

In these dark hours, you have no idea why you’re going through this, what God’s existential meaning is for it, how to drudge through each painful day, and how to “enjoy” life when you don’t get to participate in 95% of it.  Please don’t think we want to sit in a black room all alone and mope and whine and complain and embody misery – we hate ourselves during the dark hours for not just being peaceful about still being alive.  We feel bad when we’re depressed, because we deluge ourselves with guilt for what we must be putting our loved ones through.  We honestly don’t know why our loved ones stay with us, why they stick around through the desperate health times or the ho-hum-boring health times, other than we think ya’ll feel obligated to us or “stuck” with us.  I know I don’t want to be a Debbie Dragbutt and get all depressy every day when my husband comes home and I’m still in my PJs in bed.  We’re not only trying to find a way to live our new normal, live our new life, live our new reality….we’re trying to find a way to include you in it and BE INCLUDED in your healthy lives as well.

This post isn’t to scare anyone…..I’m not trying to make people think that all of us sickies contemplate suicide in the dark hours.  I’ve seen or read about some seriously, extremely, on-their-deathbed ill people in this world that live hard, going full-steam ahead until their dying second, shooting rays of sunshine and positivity through their smiles until the very end.  Those people have my humble and utter respect for not letting their illness or their dark hours take over their zest for life.  Not all of us can be as positive and upbeat as those heroes, but we try to find our laughter and light as much as we can….and we still cling to hope.  Hope that God will reveal the purpose of the struggles in a way that we can grasp it and understand it, and hope that He has brighter, healthier days ahead for us.

Hope that the dark hours won’t envelope our souls, and faith that He is mightier than it all.

“My salvation and my honor depend on God; He is my mighty rock, my refuge.” Psalm 62:7

Life Passing Me By

People always tell you to live life to the fullest, make the most of every day, squeeze all you can out of every moment, because life is extremely short and you don’t get another shot.  For those of us with chronic illnesses, hearing these statements can crush our soul into dust.  We would LOVE to be able to live our lives, the lives we had before the creatures from Chronic Disease World invaded our bodies and took our joy for living every day to the fullest and set it on fire.  We had dreams, goals, wants, wishes, places to go, new experiences to try, and visions of the kind of life we truly wanted to live.  I still watch every season of “So You Think You Can Dance” – I see myself up there, swirling around the stage, moving to the music, being the dancer of my dreams.  I long to express myself through dance and movement and music.  I dream of the day when I would actually feel good enough to visit the paradise that is Bora Bora.  I wonder how finally going back to school to be surgical technician would feel, how watching doctors save people in surgery would be like.  I wish every day that I could scoop up my wonderful husband and jet off to a romantic vacation – or just ANY vacation.

And yet, here I sit.  Typing a blog, watching TV, staring out the window, and realizing that I can no longer be a part of my own life.  Right now, my husband and my 11-year-old step-daughter are whooping it up, having a great afternoon tubing on the lake with friends…..and I’m sitting in bed, watching 4 dogs drool in their sleep.  I honestly wanted to go to the lake, too – but as soon as I brushed my teeth and put on some make-up, I was so exhausted I knew a day at the lake was not on my agenda.

I MISS life.  Date nights, cookouts, movies, travel, shopping, concerts, adventure sports, water activities, biking, hiking, etc – so many things I can no longer participate in because my body has turned into an 80-year-old version of itself practically overnight.  Those of us that are left behind, that are too sick to join the family on outings or too tired to even take a walk around the block – we feel so extremely guilty for what we’re putting our families through.  I feel overwhelming sorrow for my husband, that he married a woman who was somewhat fairly healthy when he met her, but she has now slid into the pit of Chronic Disease.  I’ve told him to leave me, to find someone he could actually share his life with, but he tells me that God sent me to him to be his wife and he loves me just the same.

I also struggle with the fact that I no longer contribute to my own finances.  I applied for Social Security disability almost 3 years ago, and I’m still in the appeals process (been turned down 3 times now – a whole ‘nother blog).  I’ve been a homeowners association property manager in my past, and still manage one small subdivision, but that pays a mere $50 a month.  I can no longer support myself, or help my husband with our mounting bills.  There are days I feel worthless and useless for not being able to contribute to our financial household.  I had even tried to return to work a few times, getting some secretarial jobs through staffing agencies, only to have to quit a couple of weeks in because my body just wouldn’t keep up.  For a woman that spent 25 years supporting herself, dropping to basically nil in the bank account and not being able to help my husband provide for our family is certainly soul-deflating.  Truly, what am I here for?

We WANT to join you at the lake.  We would so much rather be out there in the sun and surf than sitting in our beds, watching “Sex and the City” for the 53rd time.  We know you hate to make plans outside the house anymore, because you know there is a 75% chance we won’t feel good enough to go when the times comes.  I cannot tell you how many times my husband has made plans and how many times I’ve had to back out because my body wouldn’t compromise on when it wanted to feel horrid.  Us sickies feel like enormous burdens to you, our families.  We know you’re frustrated, angry, tired, and feeling helpless – we are, too.

I think one of the things that has hurt me most is when family says something like, “You’re always feeling bad; you can’t ever join us anymore!”  It feels as thought absolutely no one believes you when you tell them how you’re feeling, or that you’re choosing to feel sick every day, or that you’re just being lazy and whiny.  I think one of the worst things I have heard is that God would heal me if I really believed in Him and believed in His healing powers, and I’m just not praying right or I don’t have enough faith.  Faith is the ONLY thing that has gotten me through the worst times!  You cannot tell someone that any part of their disease is their fault and if they would only do x,y,z they would be healed.  God does not heal every sick Christian – that is nothing that is promised to us in the Bible!  We all have a time to live and a time to die.  It’s going to happen to all of us.  So implying that I am still sick because I am not believing in the Lord’s healing enough is like sticking a dagger in my heart.  I pray and believe and pray and believe and pray and believe.  God will show me in His time why I went through this illness and what it all meant.  Until then, I will deal with my illnesses the best way I know how.

I wish I could give you some magic formula to help you be able to deal with how to live your life while your ill loved one finds a way to live theirs in the world of disease, but there isn’t one.  I can just tell you that patience and laughter should be the top tools in your Disease Dealing Box.  Please realize that your loved one is struggling not only with their disease, but they are struggling with how their disease affects their family on a daily basis.  We would give almost anything to have our healthy lives back, and we know you would, too.  Just understand that we have many feelings trapped inside us about what life has given us to deal with and how we now have to navigate through life while fighting FOR our lives.

I know that I want to be apart of my family on a day-to-day basis.  I don’t know if my body will cooperate or not, but my thoughts and heart are already with you.

Beginning of “Living My Chronic Life”

“Relieve the troubles of my heart and free me from my anguish.” – Psalm 25:17

Remember the dreams you had as a little kid about the life you would lead as an adult?  I used to love to get the question, “So, Teri, what do you want to be when you grow up?”  I was the girl that was predestined to be the world’s only doctor-dancer-actress-writer-world traveler.  I can’t explain it, but I sort of always felt as though I was put here for a big reason, that maybe I was meant for stardom.  I always wanted attention as a kid, always was putting on plays with my sisters or cousins, always dancing and singing for anyone that would watch and listen.  I thought I was going to be a star!

However, no one ever dreams about their adult life as a little kid and says, “When I grow up, I want to be chronically ill with several rare, degenerative diseases!”  No – this is not the life I thought I was put here for, and certainly not how I saw my adult years playing out.  Trust me, this is not the life that anyone ever asks for, but many of us are dealt and must find a way to cope with it or, well, quit.

I wanted to write this blog for this number one reason: people have no idea what their family members or friends with chronic illnesses are going through or even how to talk to us.  I want friends and families out there to understand that your loved one is struggling mightily against bodily forces of darkness, a struggle so exhausting and mind-boggling that they couldn’t explain it to you no matter how hard they tried, knowing you’d never understand.  We feel as though we are fighting against Satan himself.  As it is written in Ephesians 6:12 – “For our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms.”  Our bodies, which exist to keep us living from second to second, are actually seeing us as evil invaders in our own flesh and fighting to extinguish our breath, plain and simple. Our fight against the deadly world of chronic disease is a fight to the death on a daily basis – and not all of us win.

Please read my “About Me” page to get the basics of what I’m dealing with, and in my blog posts I will share with you the struggles, the pain, the sorrows, but also the joy, the laughter, the comedy, and the love that comes with being a human living with degenerative diseases.  As always, feel free to contact me at txrepub4God@yahoo.com with any questions or feedback.  I pray that I can help you understand your loved one’s battle in some small way.  God bless you for wanting to understand what they’re going through.