There are things that happen in a family when someone is sick. Good and bad. A lot of stuff that I just can’t write about all the time, or we’d all just be depressed 24/7. It’s not that I don’t want to get it all out…believe me, I do. But there is a part of me that wants to spare you the whining. Because it does feel like whining sometimes.
What people do not understand about a chronic illness like Lupus is that the treatment, and medication, and most importantly that the illness is chronic.
Hear me out.
It never ends.
It just keeps going. And going. And going.
I see the doctor for an office visit. I see the doctor for a 7 hour treatment. Another 7 hour treatment. Another 7 hour treatment. Then a 2.5 hour treatment the next day. Then a half an hour treatment once a week. Oh, and every two weeks I see my pain management doctor who tries to keep all the pain for all of the above under control so I don’t have to be in the hospital for pain management. Then an x-ray. Then an MRI. Then I see my regular doctor to update him. Then I see my OBGYN to update her. Then I do another round of all those treatments up there. Then another office visit. Then the neurologist. And he orders some tests. So we get those tests done and then it’s time again for all those treatments up there and visits and ….do you get the idea here?
It never ends. On average I see a doctor 3 out of 5 days per week. Most of those days include needles. And it’s exhausting.
But understand it’s NOT exhausting for me all the time, it’s exhausting for everyone who loves me.
Why?
Some days the news is good. Some days it’s iffy. Some days the news is crappy. Some nights Aaron drives me to the ER and they always offer to keep me. Sometimes I have them keep me and I have to stay a few days. Sometimes I just come home and do the best I can.
It’s not that we’re not thankful that I am better overall, it’s just that this isn’t like a cancer or some illness where you fight it and fight it and either you beat it or you die. It’s not like that. I have to fight and fight and fight and fight and fight and fight and fight and fight and the fight just keeps going. And it doesn’t seem to matter how hard I fight or how hard my family hopes and wishes or how hard we all work together…
It just NEVER FUCKING ENDS.
It doesn’t stop. The appointments. The treatments. The need for help. The need for hope. The need for NEED.
And some days it’s just hard to wake up and do it all over again.
Believe me. I’ve learned a lot since this all started over a year ago. Almost two years now.
I’ve learned how to swallow my pride and say ‘yes’ to help. I’ve learned that I can not fix everything. I have learned that I am not in control. I have learned that I still screw up a lot. I have learned that my children are more resilient than I ever imagined. I have learned that my husband is stronger than I ever knew. And I have learned that some friends will surprise you in the best and worst of ways. I have learned that love does make it all better and helps me fight harder, but I have also learned that I can’t make it all better just by loving back. Love doesn’t cure Lupus either, but it sure is powerful against it.
I have also learned that I do not know how to handle this on going shit storm that just does not stop. I have to plan again for treatment that starts on the 7th. Right after speaking on the 4th at Blog World Expo– provided I am strong enough…which I should be since the only travel involved is getting in a car and going downtown.
Maybe this is the story I need to tell more often when people ask me about having Lupus. Maybe I need to explain more about this being one hell of a long marathon. And how it’s hard to ask people to hang on just a bit longer for me to get better, to please just help me ride this out, to please, please just understand that I too wish I could attend/workat/cometo/beinvolvedwith/helpoutat/domorethan/be/do/fillintheblank thing you are asking me to do.
I don’t want to go to bed early. I don’t want to take naps. I don’t want to say ‘no’ and I sure as hell don’t want to have to be left out of that whatever for the 20th time because no, I’m STILL not well enough.
So before you go feeling sorry for me, or annoyed with me for bitching, know that – overall – I am improved. It’s just slow. So slow that it’s nearly killing me slow. Ok that’s not literal but you get the idea.
Aaron and I just need an extra push to get us over this hump so we can battle this for a bit longer. We still have a ways to go before I can declare anything normal around here and before I can finally feel like I contribute to the house, work, life, etc.
I can do much more now than I could before. I’m not losing organs. I’m not in the hospital. That’s all good. But the treatments are never-ending. The doctor is stuck to me like glue right now, his choice, because I need to be ‘watched closely’ right now. And I’m just afraid that we’re worn down here a bit too much.
Nothing helps more than having those moments where the four of us are laughing and playing. Nothing helps more than being able to see relief in their faces and when that’s not possible, to at least see joy. Tickle fights need to happen more often. Maybe we need to have a live version of Angry Birds and toss some stuffed birds and pigs around the house. Maybe we need to make a batch of my Dad’s special ‘cider’ and take the kids trick-or-treating with friends and just talk and laugh. Yes, there will be me in a wheelchair as the constant reminder but hey, that means I can hold more cider and candy.
Silver linings. I will be pushing more and more of them as we keep pushing on and on and on. Because Lupus = chronic and this is a long fight. A long, long fight. And just when I think I don’t have anymore in me I hear from a small voice upstairs how if Mom were a stuffed animal we’d name her Squishy because she’s the squishiest. If Dad were a stuffed animal he’d be ‘PG’ for ‘Party Guy’ ’cause he’s the most fun. And I laugh to myself and shake my head at the crazy things the kids come up with and realize that during all of this, in order to get through, we need to get a little crazy too.
Silly.
Crazy.
It works. It makes us laugh and the more we laugh, the better. And we could really use some laughter right now. Mom and Dad are tired. Battle worn and weary and in need of some belly laughs.
And I refuse to let Lupus take those away.
Ever.
I am so happy that you have the family you do to help carry you through all of this. I’m out here rooting for you, and all the naps you need are okay with me.
Hi- I’ve been reading your blog for a while now and just want to tell you that you are amazing and so brave. I work for a large website in a high stress role and two years ago I found out that I had MS- it was devastating. Many loving people told me “at least it isn’t cancer” and it made me so mad. I would scream “yeah well at least with cancer they fix you or you die”. So I very much understand that sentiment as sad as that is since cancer is so terrible. Thankfully, I am well now and hope you will be too. Stay strong, I truly can’t imagine what you are going through (esp since I don’t have kids), but I know things will get better. Thank you for sharing with us. I don’t like to get all religious-y on the web- but you’ll be in my prayers.
Oh Erin, I so understand. I’ve said to my husband more times than I can count, “I wish I were fighting cancer instead of this damned disease that just goes on and on.”
Even the Plague would be better because eventually there’d be an out. It’s pretty awful, and endless, and exhausting, and guilt inducing (refer to your list above abt attending events, etc).
I’m not sure it gets easier, per se, but I have gotten more used to it. It doesn’t feel life and death and “kill me now”‘as it did in the beginning. So there’s hope.
Meanwhile, tell those kids you love them 1000 times a day. Mine make my hard, painful life worth living.
xoxo
Chronic is a word we don’t understand until we *really* understand it, isn’t it?
I find myself understanding it time & time again. Every time I think “well, this has finally sunk in” something happens that drives it home again. Recently it was having a shot in my neck that had Lidocaine in it along with the cortisone. When we got home? There was about a 2 hour period where my upper back felt like it did 20 years ago and I wanted so much just to stay awake so I could just feel that way for a little longer. When I woke up 4 hours later in pain again? It was like a gut punch. I’ve cried over it more than once because I didn’t realize how much I had just gotten used to being in pain all of the time and it was such a shock to not feel it that I couldn’t even process it.
But I keep hope Erin. I hope so much that the near future holds the ‘medical breakthroughs’ that so many people have spent so much time, money, prayers, and life on – that the ‘incurable’ diseases become curable, that the diseases without known causes get explained, that stem-cell science gets to the point where we can regrow organs, teeth, bones, cartilage – that the Jetson’s future isn’t just flying cars & robots, but the medical advances that we so desperately need. I hope that some day, you and your family and the rest of us that love you can some day look back at these posts and say “oh wow… remember what it was like to feel so scared, so exhausted, so ready for even the smallest bits of good news? Who knew that it was going to all change then…”
But until then? Laughter and love are the best medicines. Deep, deep belly laughs and deep, deep love.
Thank you for writing this one Erin. It has me in tears for so many reasons – but it really helps to read it too. Much love from here my friend.
Oh Erin…my heart aches.
I was the primary caregiver to my mom for the last 3 or 4 years of her life. She had chronic disease upon chronic disease. Some days I didn’t know how she could go on. Or how I could. It’s not fair. I learned THAT particular life lesson pretty well.
But she did go on. We got help. For instance, Mom going on antidepressants was one of the single best things that ever happened to my family. “Of course she’s depressed!” said the attending hospital doc. “She’s been very sick for a very long time.” Those pills allowed me and my kids to interact with Mom, not with her pain and suffering. She finally accepted the (pharmacological) help she never allowed herself when I was growing up. I think I would have been a very different person if she had. But that’s a whole different blog post!
On this journey, you find happiness and peace where you can. In the little things. Stopping at Mom’s favorite restaurants after doctors’ appointments. After the really tough ones, we ordered margaritas. It became Mom’s signature drink.
Erin, I admire your strength. Your courage. Your tenacity. Some days, it might not feel like enough. But it is.
We’re all just struggling along through this life the best we can. And I’ve found that life is INFINITELY better—for everyone involved—with the blessing of help. Don’t be afraid of asking for it. I am a better person for having helped Mom through the last years of her life, and I was infinitely blessed by all those (doctors, nurses, aides, neighbors, friends and family) who helped me help Mom. We’re designed to work together.
All the best to you and yours. You’re in our prayers…chronically. 🙂 And I mean that in the best way possible.
Thinking of you. And how much love doesn’t cure. And how there are so many of us who have so many things, your battle w/Lupus included, that we wish love alone would keep from happening. Know that we are witnesses to your struggle, the neverending fight. And we WILL hold you up. Just like the kids’ silliness and your laughter will be an additional, good medicine.
Everything about you is amazing… Everyday, I can look forward to your commentary on twitter… admire your relationship with aaron…. Love your parenting skills … Think your children are magical… You are the most quirky fun creative foursome … Thank you so much for sharing this.
That was a really great description of chronic disease. The cancer war analogy has done those with chronic disease a disservice, I think. People want to know when you are going to win (or lose). My daughter has chronic kidney disease. I am often asked when she will get better….or be normal…or any variation on the theme. The truth is, even after a transplant, she will always be a patient. We are grateful that her quality of life is good, but doctors, medicines, tests will always be a part of her life. Thinking of you and sending you strength in this journey. May there be more highs than lows.
I don’t think you sound like you’re whining at all. In the face of all of this hell you’ve been as honest and as upbeat as anyone could. Keep laughing!!
Erin, I’m so happy that you have laughter. I don’t know why but I’ve lost the ability to laugh most of the time. Hold onto that ability like it is gold.
I don’t think anybody minds hearing you vent your anger and frustration with your illness. Nobody knows what it is like to be you. Not even ME. And I have Lupus. Your stories have made a difference in my life. Ever since you started your fight and I have been reading about your progress and set backs on Twitter and on your blog it makes me thankful I have not had to deal with the dark side of Lupus like you have.
I always felt kind of down in the dumps that I had this chronic semi-terminal illness that I would eventually die from. When I was diagnosed I was diagnosed based on joint pain, fatigue and hair loss, then came the lab work and the ANA tests.
Sorry ma’am, you have Lupus. Nothing really we can do but give you anti-inflammitories and Steroids and hope you don’t get too sick. I took drastic measures. I read the book The Lupus Recovery Diet. I became a vegetarian and started eating VERY differently. I started taking LOADS of dietary supplements and vitamins. I have contributed my lack of severe symptoms with the things I do…diet and supplements but I really feel like I have just been lucky.
Watching your ordeal unfold has made me appreciate my lack of illness. I do sometimes feel bad for you. Wondering why it had to be so hard on you when some of us just simply HAVE THE ILLNESS but don’t really suffer too much from it.
I get sad sometimes wondering what will happen to your kids if something happens to you. I think of what I would feel like or how scared I would be if I were in your position. And I just can’t imagine it. Not knowing what your illness will bring you from day to day and yet still trying to put on a happy face so your kids don’t stay sad and depressed and worried that mom is going to die.
So, I just wanted to say that nobody minds your “whining”. Nobody with any compassion in them whatsoever could ever feel anything but empathy, and oddly enough, gratitude for what WE AREN’T having to suffer through.
I hope things get better for you. Even if it is very slowly. As long as it heads in the direction of better days and improved health.