What if…

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And I just lie there… hurting… more hurting… Despairing

Just a Half-Life. Battling, battling, and more battling the pain from my betrayal body. This body that has done miraculous things, strong things, tender things…this body that has felt wondrous things, carried me places, danced and danced and danced to bring me such joy. This body that has grown beautiful babies, birthed them with my own strength – strong and healthy…and then fed and nourished and nutured these babies.

My body has done all those amazing things.

Has it just been exhausted to the point of no return? Have I abused it or not cherished it enough? What have I done? What have I done?

And so now I baby this body… I listen to its every whisper, even nuance. Sometimes I push it…when I’m unsure if it will be able to perform – I consider the saying “mind over matter;” and I push the body, thereby pushing my luck. 

I medicate it…so that I can tolerate living with the pain it shoulders on me. 

I still try to view it as a temple; a body that can do along things…but it holds me back, it cages my mind. And I Despair that I might never expect it to do any better.

And I just lie there and I suffer and I fight on. I’m so disappointed in myself! I wish I could fake better health …better.

^ My beautiful warrior me…faceless, alone…

^ Alone

RFA R L/S: Procedure day for the #ChronicThugLife 

Today was Radiofrequency Nerve Ablation for the right lumbar/sacral side. Hopefully this will help with my chronic lumbar/sacroiliac dysfunction. I go back for the left side in a few weeks. I’m told it usually feels worse before it gets better, so I’m home in bed now. I can feel the burning starting in that whole right side.
I was very nervous this being the first time for this procedure and sedation.

They were so incredibly kind at the surgical center; so incredibly kind. While being wheeled back to OR, I told them I was getting a bad migraine with pain and nausea from the storms and the nurse anesthetist popped 2 meds in my IV which immediately helped. Then she said, “I’m going to put you to sleep now.” I opened my mouth to tell her she didn’t need to, but the words never came out – and I was waking in recovery.

There, I started balling my eyes out telling all the staff they were the most caring people in the world and thanking them profusely. I was also concerned: “Was I an ok patient? Did I wake up ok? Was I mean? Did I need a lot of O2?” Crying crying crying. “The NA gave me meds for my migraine – wasn’t that the nicest thing ever?”

I think I had the staff nearly falling over with laughter. Lmao.

They gave me 3 juices!!!💜 Marc started laughing when he heard I was crying with gratefulness.  #goober He told them he wasn’t a bit surprised, “She’s always like this.” Lol!!!💜

I absolutely never ask for help, such as a ride or someone to take and wait for me. But I will honestly admit, it was a great comfort having Marc there.
So that’s my big day.😆 Thanks for listening.😆

I can remember that life before. But I cannot remember how it felt.

Posted this to my migraineur peeps today as this post from 2012 came up in my Facebook feed. This may have been my last 3 day low/no pain run. It was a short run, to be sure. 

In describing life before #ChronicThugLife, Selena (a fellow migraineur) said, “I can remember that life [before CM] but I can’t remember how it felt anymore.”

The words really struck me; they describe my reality and my thoughts perfectly. I remember a time when I fell ill with migraine maybe once a month, maybe once every three months. I think I would be ill a few hours, unlikely the entire day. 

I remember having little children, holding and carrying them around, cleaning like a freak while they would nap or watch a TV show, I remember exercising every morning before the babies would get up. I remember being tired, but it was nothing like this Pathologic Lethargy I now have. I remember being frustrated, happy, tired, hungry, thoughtful, and so busy. I remember I would nap in the afternoon when the kids had nap or quiet time. That was a sacred 2 hours. I remember passing out when they were down for the night at 8. I remember diaper change after diaper change, car seat struggles, tying shoes, dressing fussing children and babies, putting on sunscreen and floaties before pool time, birthday parties, preschool, kinder, preschool, and crafts. I remember my weight fluctuating like between 123 and 170 with pregnancies and weight watchers. I remember breastfeeding a LOT. I remember drinking a glass of wine while cooking in the evening. I remember stroller walks, pushing 1-3 children. I remember teaching my children to ride a bike, climb a tree, swing on a swing, write their name, read, name a shape, make the correct animal sound. I remember singing them song after song… Bah Bah Black Sheep. And when I would stop singing, they would cry. I remember cleaning lots of bodily fluids and caring for many sick kids.
I know it all happened. I see pictures in albums and I believe I can remember their warm little soft bodies next to mine as I fed them, the smell of their little heads of soft hair.

I remember I was me. I looked the same, I laughed the same, I cried the same. I have the same eyes and smile, brush the same teeth every day. I still love shoes, makeup, a sweet pair of earrings or a funky ring, a twisted joke, friendships, children, a glass of wine or 3, and music and movies – I love them! My sweet husband has been at my side the whole time and we’ve watched our children grow from tiny babies to young adults.

I remember living on campus in Allentown, in our apartment in Whitehall, our big beautiful wedding and honeymoon in Maui. I remember our darling cape cod in Worcester and then our townhome in the same town. I remember our remarkable trek across the country in the green Ford explorer. Our first home in Tucson. Our devastating miscarriage. The following 10 years in our Labyrinth Dr home where all our babies were born at the Tucson birth center. And then…finally, I remember accepting I was very ill with depression, then later, very ill with anxiety disorder. I remember our move into our Echo Valley home in 2007. The home I’d dreamed of since my first baby was wee. 

I remember it being a very difficult move, even tho it was only a mile away. We thought we could do it on our own and we had SO much stuff accumulated over a decade and our hands were so full with a 4, 5, 7, and 9 year old. I was working part-time, Marc was working full-time. It was then I noticed my butalbitol prescription (my migraine med since my early 20’s) was no longer lasting 6-12 months. It was only lasting 1-2 months. And I was taking ibuprofen for head pain every day. I was also starting triptans. The new exciting migraine med that I had never needed.
It was a slow realization…certainly not overnight. But the head pain, the migraines, the sciatica flares… suddenly my body was dealing with a barrage of frequent pain. I ignored it at first. Certainly, it was just a fluke. Even though in the back of mind, I knew needing so much ibuprofen – just to make it thru the day – was alarming.

This was my jump to Chronic. I know that now. I didn’t understand it then. I go over and over this time period in my head, wondering what I did wrong, searching for the cause. And I come up short. I remember my doctor having me come in… she’d noticed the change in the prescription. Together, we worked on a solution to right me: different meds, different approach. We did an MRI, consulted a neurologist, tried lots of medications.

But nothing seemed to work. Or, if it did, it didn’t work that long. I kept throwing pills back and smiling. Just get thru it! Suddenly I could no longer exercise every morning – the pain was too frequent and too much. I couldn’t understand what was happening but was pretty sure it was just a phase. I guess. The first neuro said she couldn’t help me anymore. It was just my primary doc and me. And that was ok. Until August 2008, when a six day migraine landed me in the ER. Our friends watched all our kids for the 5-6 hour treatment. I was devastated having to ask so much of anyone. They were our children, our responsibility, and asking someone else to watch them was something Marc and I did exactly never.  The ER doc recommended I find another neurologist.

It was sheer luck that soon after, I connected with a friend of a friend, Andrea, at the time. She was in constant migraine pain and her husband, a doctor, was getting her all the best treatment – even Mayo Clinic. I called to get in with her neuro (who she left soon after, feeling like her care wasn’t good enough). That was Wendi Kulin MD and my experience with her was different from Andrea’s. Wendi tried a few other meds with me but then got me into the Botox regimen (finally approved in 2010/11). While Dr Kulin was tough to get on the phone, she was a pleasure in person during our monthly or every other monthly visits. There were times when I admitted to her that I was losing hope that these migraines would ever end. And she’d look me in the eyes and say, “Don’t give up hope. We will work together. I’m here for you.” And I’d cry in front of her, moved by her assurance. What I didn’t understand at the time…and wouldn’t until 2013…was that, once getting that diagnosis of Chronic Migraine in 2007, it meant migraines wouldn’t “go away,” the best that would happen was they would be reduced or “managed.”

In 2010/11, I began to suspect that there was some autoimmune thing happening with me. It was like my body was crashing. While my migraineur friend Andrea (the absolutely ONLY other Chronic I knew) would go on to a hysterectomy to control her migraines, claim it “worked” but then later went gluten-free and claimed it “worked,” she still seemed to be struggling. I suspect she is still chronic, only secretly suffering. When I check with her, I get vague answers. “I’ve never felt better than I do now that I’m gluten-free!” does not say she’s no longer suffering from frequent migraines.

I was dealing with exhaustion as I worked part-time, I had a goiter and hypothyroiditis flare in late 2010, I fell ill with a devastating and dramatic case of shingles in 2011, I was becoming hypersensitive with my reactions to stimuli – usually so calm and cool, if someone shouted my name, I now found myself jumping a foot in the air, my sciatica flares continued to grow more frequent and intense. And all the time I was questioning myself on what I’d done to cause this failing health. The depression and anxiety were intense. All in all, I was fucking miserable. I was contemplating suicide all the time becuz I felt my kids and husband would be better without me burdening their lives. In all things, I was failing. I was not good enough; I sucked. 

Dealing with friends and anything outside my home was difficult: I hid my illness. Becuz anytime I opened up and mentioned it, I was met with disbelief, my cries were glossed over, and I was quite sure and convinced I was a complete freak. Better to hide it. Cutting helped. Therapy helped. Discovering, researching and working thru childhood mental trauma helped. Friends…friends didn’t help much. I was completely alone. And I hurt so much.

In 2013, we left Tucson for a job relo in Austin. 

It was a good move. I found a great neuro Sara Westgate and never skipped a beat in my botox regimen. The move was stressful and made my health flare…I was diagnosed with Rheumatoid Arthritis and later Sacroiliac Joint Dysfunction. Although my neuro provides excellent preventative chronic migraine care, I’ve had to add a rheumatologist and pain specialist to my care…just to “manage” my chronic pain. I also have added a psychiatrist NP and therapist, pulmonologist and others to the my healthcare team. I thought when we moved in 2013 I would take a year off from nursing to focus on my health. But it became pretty clear that returning to nursing may be a pipe dream as my health deteriorates, instead of improving. 

A game changer happened in the fall of 2014 when a college friend Heather took note of my frequent Facebook migraine posts and proactively added me to a Facebook chronic migraine support group. To my shock, I was suddenly around hundreds of real people who were suffering EXACTLY like me. For weeks and weeks I kept asking aloud, “Where were all you people all this time? You really have head pain everyday too??” Suddenly, I was no longer alone. And if I was a freak, I was among a mess of other freaks – just like me!! This is where I met Selena, among other caring, supportive migraineurs.

So. Here I am. Everyday. And I think back to before 2007. I think back to 1994, 1997, 1998, 1999, Y2K, 9/11, 2001, 2003, 2004, 2005 and 2006… 

I remember that life. But I just for the life of me, cannot remember how it felt anymore. 

I cannot remember what it felt like not to have constant pain, exhaustion, problems concentrating and thinking, constant guilt, depression, anxiety, dizziness, malaise.

Profound.

I’ve changed. I’m still me but I’ve changed.

2006^         

2013^

Rheumy

Marc came to meet my Rheumatologist Tina Bunch today. I’ve been her patient 3 years and he finally got to meet her.

I asked her if I could get better control of my RA; just exactly how much pain and symptoms am I supposed to live with? She said my joints aren’t as bad as someone they’d start on a biologic but she “didn’t live in my body” and trusted my complaints. She recommend starting Humera injections every other week. And of course staying on the Methotrexate. The plan is to try it four months, if it helps me feel better, that’s awesome. If not, I’ll go off it. I had a crap ton of blood drawn including TB work up as a precaution with a biologic.

Marc had questions; it was nice that he came and finally met her. He liked her, just like I do.

On my way home, I could feel a migraine brewing. Ugh, and I want to stay away from triptan for a couple days; I’ve had to take so many.

Home. Check on the kids. Going to nap with ice on front and back of my head (ONB injection sites are sore from Serapin yesterday). Took Frova and indomethacin and will nap a couple hours. This week has been so busy. And I’m in rough shape. I need rest today. But I hope I can still get some things done. Laundry? Phone calls? Erika’s Caring Bridge? Some biz?

💜

Serapin Day

But who really gives a shit? Same old, same old. I’m just a little Rockstar in my own little rock star universe. When I post these updates on Facebook, no one really knows what to say anymore. I should just stop posting so much about The Chronic stuff. It’s awkward. So very awkward. 

That which does not kill me only makes me weirder and harder to relate to.

Just shutting up would make everyone more comfortable. I know there are a ton of Pain Warriors out there who simply shut up; they don’t talk about it. Donna has always been Niagra-fucking-mouth, tho.

Therapy today with Lisa. I realized what’s really been upsetting me with the kids. I feel ignored. Ignored X 5. It’s probably my own fault and I’m just being hypersensitive. I do not know what to do. I would love 5 days off for good behavior, either to go to a Sanitarium or the Cayman Islands. Being ignored, feeling like a burden, pathological lethargy, varying pain and oppressive summer heat… it’s all so totally exhausting. My soul feels like a thin wet rag. Although my body shape borders on obese. And I am overwhelmed with feelings of uselessness. Such a waste of space. Not really successful at anything accept feeling useless and guilty. My biz is a joke and so am I.

And my allergy asthma cough is back really bad. Productive, hacking, disgusting cough. Sometimes it leaves me in fits, gaping. I could collect a jar of sputum. Fucking gross.

Date night with Marc tonight. I’m so tired and I need to make a dinner for the kids. Joy.

No longer apologizing…

​This is an excellent article. And reminds me that I am so so so NOT there. My Guilt Feast…hour after hour, day after day. It wouldn’t be so powerful except for the reason that everything is my fault and I’ve somehow caused this illness. Do people with cancer believe that too?

I’ve Decided I’m No Longer Apologizing for What I Can’t Do Because of My Illnesses

By Amber Hosea

I am disabled. It wasn’t until this year that I started to accept that, and realize that my illness (or rather illnesses) is here to stay. This year I was diagnosed with a systemic autoimmune disease known asSjogren’s syndrome

I won’t lie, this illness is a cruel one. I honestly don’t know how I’m going to feel from one day to the next. I had a hunch a few years ago that I probably had an autoimmune disease since my entire body seemed to be under attack. I’ve been diagnosed with illnesses like interstitial cystitis andfibromyalgia, but I didn’t want to believe that I couldn’t cure them. I tried every remedy I could, but over time my health was only getting worse. I was angry that no matter how much willpower I had or how much money I spent, I couldn’t get well. I was angry at other people for being able to take their health for granted. Most of all, I was angry at myself for the guilt I felt and the need to apologize over and over again for being sick.

I recently decided that I will no longer be apologizing for not being able to do what I was once able to. Saying the words “I’m sorry” implies that I have control over my debilitating symptoms. I think we carry this guilt with chronic illness because we feel we’ve somehow brought it on ourselves. I can no longer apologize or feel guilty for not being able to make plans, or for being unable to work, or even brush my hair sometimes. It’s not my fault. I spent so much time trying to convey what it’s like to be ill to others, and I avoided the fact that I wasn’t willing to accept my limitations. I refused to believe it wasn’t going to get better.    

Now, for my sanity, I have to mourn my former life and simply let it go. I’m releasing that energy into the universe so it no longer weighs me down. I know firsthand that chronic illness can break your heart over and over again, and there’ll be days when you feel as though the loneliness will shatter you into a million pieces, but I would like to remind you that it’s not your fault. I know that you’re simply doing the best you can.

I didn’t want to accept how sick I was because it felt like giving up, when in reality learning to accept my limitations and let go of the guilt has been the best thing for me. It’s allowing me to start over. 

I’d like to believe that I’ve been given this illness for a reason. Whether it’s to educate people about this disease, or to learn a lesson about myself, or hell maybe it’s just that I’m tough enough to take the beating. Whatever the reason, I’m learning to embrace it. Who knows, maybe I’m turning into a superhero. I mean, my body does do things that a “normal” body doesn’t. 

Yeah, that’s probably it. I’m a superhero.