Life in the Autoimmune Lane

Tag Archive: Autoimmune blog

Put yer eyebrows on foo!

Woman Wearing Holter To Monitor Heart ActivitySo today I got my holter monitor attached to me. Mine is either really technologically advanced or this is a really old photo of a woman wearing a holter. In my search for images I noticed that the top two electrodes in ALL the photos were placed up higher on the chest, just like in this photo. Mine are placed on the top parts of my boobs. What the heck?? And the unit itself is the size of a pager. Doesn’t that just date someone when they say ‘pager’? I recently flew next to an 18 year old kid who had never seen one. (hahaha, I schooled him on how life was back in the stone age) Anyway, had I looked these up yesterday I would have asked the tech who stuck them to me why the heck are they on my actual boobs. Now I feel like 2 days from now when I go to get it removed another tech will look and go “oohhhhh. Marcia put this on, right? tsk, tsk. We have to do it ALL OVER AGAIN.” Because that’s the kind of luck I have.

So rewind to 4:30 this morning, I got up, sat in our recliner and cried like a baby. Not because I had to get a 48 hour holter, it’s just I’ve hit my limit in the sick-kid game and when this happens, and it does, I crack and weep like a baby. Trust me, as hard as we try not to cry, letting out a good cry ALWAYS makes you feel better. Purged. Then I threw my ass in the shower and as I was getting ready, I was searching for my eyebrow makeup. Where could it freakin be??? And I thought about it, I only do my eyebrows if I’m going to the doctor. And that’s it. And it hit me, I only put my eye brows on when I have an appointment. Not because I’m trying to look good, but that’s the only time I leave the house anymore!! I used to be wearing a face at all times. I’ve been known to sleep in makeup (ewwww) for fear someone would see me with no makeup on. Is that crazy? Yes. But I’ve never said I wasn’t crazy. Fast forward to 2014 and I never have make up on. Like ever. I guess the line is eyebrows. I refuse to be seen without em. The crazy sick lady with the rockin eyebrows is out and about today people. Make a wide berth…

I was just having a really crappy, feel-sorry-for-myself day and it all changed when we stopped at the hospital to visit my niece. She just had a baby. Oh. My. Gosh. If you ever feel so low that you just can’t see the light at the end of the tunnel, find a baby and hold them. :D She was the most beautiful baby, making all the right new-born baby faces to make a heart melt. Now I’m home, under a bunch of blankets (the mid-west big freezzzzzeee), rockin some awesome eyebrows and cuddling with the Bean…

 

rulz

 

 

 

 

Finding Out Who You Are

I saw this quote today and it sparked a memory…

Last day of infusions, March 9, 2011I took this photo from the passenger seat of our car one morning on the way to the University Hospital upstate. This shot turned out to be our last trip up although we didn’t know it at the time. We drove up for 3 consecutive days each month so I could get IVIG and solumedrol infusions. The infusions were long (8+hours) and they really made me feel sick. The headaches that I got while sitting in the infusion chair were some of the worst I’ve had. Looking back on that time in my life it was so crazy that for the most part I don’t think I really acknowledged  the levity of the situation; just how sick I really was. I went from a walker to a cane so I knew the IVIG was helping me. I was carrying an extra 80+ pounds on me from the steroids and the water retention I battled constantly. I remember being stretched so tight that my legs would actually rip open. In the moment; in all the moments over the years, I think my brain sets itself to daily survival-mode and not really thinking that far into the future of what-ifs and what-could-happens. After this last trip up I got really sick. My brain and spinal chord swelled and I ended up in the hospital. I ‘woke up’ on the third day there but it turns out I wasn’t sleeping, I was awake but didn’t know it. Big C told me that it was like I was there but not there. So when I ‘woke up’ I was sitting up and suddenly I said, whoa! It’s really bright in here! And he told the nurses I was back. When I think about it, it just seems like a dream to me. And even though it’s scary as hell, it feels like it happened to someone else.

I had a moment when we were driving up and I took this particular shot. I remember it. My first thought was wow, cool shot! Haha! Got it on an iPhone too. :) Then I was thinking ‘this is my life’. I remember that. A sudden burst of reality. I am sick. I’m still me but a whole new different me. A me that gets up at the crack of dawn to drive to a hospital, not to go to work. I’m in the chair. I’m not attending to a patient, I AM the patient. A moment of pure clarity while I aimed my phone at the sunrise.

On that day I was 5 years sick. You’d think I would have realized this already, right? I think with chronic illness comes so many different emotions, constantly changing, that sometimes you don’t know if you’re upside down or right side up. Epiphanies hit you like a brick in the face and then fade away leaving you open and surprised when another moment hits you.  You really do find out who you are somewhere in the chronic journey. Whether you like it or not, you’re a fighter.

 

My Big Fat Greek Mom Guilt

No, I’m totally not Greek at all. I was trying to be hip. Oh wait, hip’s not hip. Oh what? That movie was like big, like, a decade ago?? Haha, you know as I was writing that I thought, hey this is the funniest stuff! I do try though, don’t I?

Today is our son’s 23rd birthday. He lives a few hours above us, and due to his work schedule and his fiancee’s work/school schedule, plus the fact that they probably don’t wanna hang with the moms and pops when they do finally get some downtime, we don’t get to see them as often as we’d like. He decided he wanted to come down and go camping with his dad. :) Perfect! But-I told everyone I couldn’t go, my body has been weird to me lately and I didn’t think I could make it in the heat and in a tent. I know. I have the most understanding of kids. They really do rock. So that’s not the guilt, here’s the guilt-I kept Bean here with me. She’s not awake yet and Big C and I could come up with nothing that would magically make her feel better about being home with me. She got to stay up late last night and see everyone, so she knows that they’re here. She gets SO excited when her uncle K’s fiancee comes. I say she likes A more that she likes candy and I’m right.

She’s timid when it comes to the outdoors, she has a hard time walking trails and fear leads to meltdowns of epic proportions. I really wanted Big C to have some quality camp time with K and the rest of the gang. If we had her go, Big C would be spending all of his time trying to soothe her so I made the executive decision to keep her with me. Here’s the thing. She has no idea that when she wakes up everyone will not be here and what the heck am I going to tell her. I kept asking C last night, help me think of a good way to tell her. Or just not a really bad way to tell her. I still don’t know. I’m thinking I’m going to tell her that they went camping for one night, and that I really wanted her to come with me to visit Nanna. And just hope she doesn’t hate me forever. (<—- melodramatic haha)

That’s all I’ve got for now. I’m going to leave you with the cutest pic of K when he was the cutest. :0)

 

AAAHHHHH!!! He was so dang cute. Now he’s an adult and he’s still dang cute but I don’t want to pinch his cheeks anymore. They’re all beardy.
Until next time,

Johnny Depp Shows Some Love For JM (juvenile dermatomyositis)

First I gotta say WOO HOOO!! I have DM (dermatomyositis) and I know that there are only 20,000 adult cases of this in the US. It’s a rare disease and in being so, it goes unnoticed where we want it to be noticed-Mainstream. If a Hollywood-ite holds up a bracelet that says Cure JM the whole world will be asking, what is JM? And the awareness train leaves the tracks. Thank you Johnny Depp. Dermatomyositis is an awful disease, but JM for kids is even worse. I SO appreciate you taking the time to hold that up for the 5,000 kids that suffer with this disease in this country.

 

 

Depp Rules!
This photo was graciously lent to me by Cassandra of Cassandra’s Journey with Juvenile Dermatomyositis (JM) and Juvenile Arthritis. Thanks Cassandra. xoxo
Click on the link and go say hi. See if there’s anything you can do to raise awareness of this awful disease.
In this country we have only 20,000 cased of DM (dermatomyositis) in adults. For children that number is much smaller, only 5,000 children in the US have JM (juvenile dermatomyositis).
There is an amazing resource for kid that have DM and their families called Cure Jm Foundation. It was started by parents of children with JM.   Here’s a video from Cure JM Foundation that tells about the autoimmune disease for children.

                                                                                                                                                                                         Thanks again for showing your heart to the world. It might make a big difference to these kids.

 

Chronicles of a New Sick Chick

 

 

I’ve been going through an old journal/blog of mine that I had set to private. It was basically a place where I vented to myself (lol) and also as a symptom tracker. It’s weird to read through it, I forgot just how truly awful things were. I’m posting these as I think they might help someone who’s newly ill/diagnosed/trying to get a diagnosis. I really was frustrated, sick, in pain, and flat out tired. I think it’s normal for someone who doesn’t really know what’s going on to have so many negative emotions. It takes time and repetition with those bad symptoms to not panic when you get them, to not be so angry, etc. I don’t buy that expression ‘time heals all wounds’ I think that’s bullshit. Time allows us to have experience with issues so they’re not so big, scary, awful. They become a little less. They still suck. I hope this helps someone out there. You are so not alone.

(I added these in the upper left hand corner of the blog, right next to About Me.)

 

My Last Visit With My Rheumy

 

I’m still sitting out back drinking my coffee and thinking. In a few hours we’ll be heading up north for my last visit with my rheumy before we move. He was my second rheumy and the first doc to really show that he cared. I was SO excited when he said he’d take me on as a patient. When I started infusions it was in his hall. The infusion nurses went on and on about just how awesome he is. I really, really hope that I can find one after the move that comes anywhere near his level of professionalism and kindness. I hope I don’t cry, lol! I guess we’ll see. :)

 

 

 

Looking Back and Moving On

 

                                                   
                                                   Image courtesy of Bit Strips on Facebook. I’m hopelessly
                                                   addicted to making these cartoons… 

We’re in the process of packing to move across the country. It’s a job that seems undoable to me at the moment. Whatever’s going on in my body makes me really, really unreliable. When I’m standing upright I have an overwhelming need to lay down. Go horizontal no matter if I’m in public or not. Haha! I’ve never laid my body down on the ground while out in public but the awful rush of the feeling of gravity pulling me into the ground is almost unbearable. Have you ever been on a ride, like a roller coaster where the ride is going so fast that you feel the g-force pushing you backwards? That’s what it feels like except it’s pulling me into the ground. sigh. I’m so completely, completely over my body doing all of the weird stuff it does.

One of my specialists tells me it’s CFS/ME the other thinks the DM is becoming active again, albeit very slowly. I guess we’ll see in time if that’s what it is. For right now though, I can get up from a chair without using my hands. That sounds so simple, but it’s the major test with my rheum to check my muscle strength. I can do it!!! I can climb stairs, I can get out of bed, I can walk down stairs which was always harder than climbing them. My muscles, other than being atrophied, are doing what they’re supposed to be doing. I should be celebrating my remission!! But there’s something else going on. How unfair is that?? To be in remission and be sick as hell is supremely unfair. I just keep telling myself ‘you’re muscles are good. you’re muscles are good’…it’s my mantra and it’s all about perspective.

                              
                                    Image courtesy of Burly Man, another myositis fighter. 
Don’t you? :D Hate it, hate it, hate it!! But it is what it is. I try to enjoy the good times with every fiber of my being. This disease and the whole process has changed me for sure but I’ve received some really good things from it too. I am aware of time and just how valuable it is. It’s made me appreciate my family and friends more. I tell the people I love that I love them all the time. I probably sound like a broken record but I mean it. Being aware of your own mortality is a little scary but it really does make you appreciate. Everything. I’m very lucky to be here on this earth, complaining about my health. haha!

Whatever is going on in my body will not keep me down. We ARE going to be fully packed and ready to go by the end of the month. I’ve found a new mantra.

Until next time,

When Depression Stops You In Your Tracks

Ok people, my body is forcing me to be pro-active, and to be honest with you, I haven’t been pro-active at all this past year. I was so sick last night that when I  woke up this morning I was surprised that I woke up. I actually had a moment of wow-I’m here.  My body has done some pretty crazy stuff to me and I don’t ever remember being surprised that I made it through the night.  When that’s your first thought in the morning it’s time to get off your ass and kick your depression and anxiety to the side and FIND A NEW DOCTOR.  I’m struggling with my depression and I’m at a place where I feel like ‘I just can’t’ and I’m intelligent enough to know that my brain is making me feel this way.

I’ll tell you a little story about the reason I haven’t gotten a new primary care doc in the last 5 months.
[side note: my rheumatologist and neurologist are amazing.]

My father fell and broke his hip last November. He was 82. Everyone at the hospital told us that all of his breathing issues were due to that trauma of the break. Before he fell, he didn’t have any breathing problems or any other physical problems, just the Alzheimer’s. We had to wait a couple of days because he wasn’t stable enough to survive the surgery. His DNR stated ‘use all measures to sustain life’ so of course we opted to get the hip surgery done. One doc told us we could not have it done and I thought that was the craziest thing I’d ever heard. He suffered those 2 days with excruciating pain all the while looking into my eyes and mouthing words ‘help me’ under the Bi-Pap in sheer terror. My father had late stage Alzheimers. He didn’t know who I was. He had the surgery and the surgeons were blown away by how well it had gone. I told them my father is a fighter, and tough as hell. Of course it went really well. I had my proud daughter thinking cap on. Things went down hill again and he was moved to ICU and vented. We had many doctors, nurses, specialists tell us that he wasn’t going to make it and that the vent would probably not be able to come out. And it did. He made it off the vent. He made it up to Intermediary Care ward and was on a Bi-PAP. With the Bi-PAP on he still wasn’t getting good oxygen levels. He was suffering.
After 2 and a half weeks we had to decide to take it off. By now, he wasn’t opening his eyes anymore. I sat next to him and prayed the rosary for him, told him not to be afraid as he is going home to be with his family, and talked about our times together. The nurses were surprised that he was still with us on this earth and his vitals even looked good. I was hurting and told the nurse I was going to lay on the window seat, facing him and she said she’d monitor the vitals behind the desk and let me know when he was close. In all of my 45 years I have never felt so guilty for having to lay down my body during my dad’s time of death. I watched his face. He looked so peaceful and I could hear his breathing. I closed my eyes for a second and I felt like a pop in the air, I felt it on my chest. When I opened my eyes I saw this dark smoke ? waft it’s way out of my dad’s nose and it pooled in front of his face. I screamed out to my partner What the hell is that?? and the nurse ran in the room and screamed ‘you better say goodbye to your father now!!!’ I jumped off the seat and ran to him screaming I love you dad I love you dad! And he was gone. The nurse said his vitals were ok then they just dropped like incredibly fast. Someone told me he waited for me to close my eyes so I wouldn’t have to see him die.

At about the time my dad was put back on the CPAP and we were told by 4 different docs that he wasn’t going to live, and that basically we were keeping him breathing for us. That we needed to decide because that breather was keeping him alive and maybe we were being selfish. In different wording, not that harshly. It was about then that my doctor refused to fill my zoloft. Refused. I had been on it for 10 years, I have depression and have since I can remember. I was at the hospital, praying and sleeping there and couldn’t believe she wouldn’t refill it. We came home to shower and I called and her assistant said she hadn’t refilled it in a year. I was speechless, I was holding the bottle in my hand and it very clearly had her name on it, along with the last years worth of bottles as well. So, we called the pharmacy. It was a pharmacy mistake. When they got a denial to fill A YEAR BEFORE from her they sent it to my old doc without telling me and he filled it. And continued to do so for a year!! The pharmacist called my doc to explain it and I did as well and she stood firm and said. No. I will not refill your zoloft. Not even a months worth so I could find a doc who would actually treat a woman with depression with the meds that keep her head above water. I had one one day and the next nothing. I spent the last week of my dad’s life going crazy in my head with grief, and my brain chemistry was out of whack after not having zoloft for a decade.

It’s safe to say that I am clinically depressed and receiving no medication for it. It’s also safe to say that I have this weird fear? to get a new doc. I don’t know what it is. I haven’t been able to go and get a new primary care doc. There was something that happened to me the year before that just shut me down completely, when it comes to doctors. It took sheer determination to find this one, the one that wouldn’t refill my zoloft. And now I feel defeated. And I can’t be. Something is going on in my stomach that will probably require surgery to fix, so says the ER doc, and I knew way back in the 90’s that one day I might need the surgery.

I’m struggling today. I’m in lots of pain in my stomach and really have to get my head together and start looking for a new primary care. I’m promising myself I will this week.

 

AARDA and “My Autoimmune Story”

The American Autoimmune Related Disease Association, or AARDA, launched a video series called “My Autoimmune Story” to increase awareness and education of autoimmune disease.  Actress Kelly Martin, who is a spokesperson for AARDA, started off the series with a video of her own. She speaks about losing her sister to lupus and how it has affected her. She also speaks about her role as spokesperson and being dedicated to getting the word out about autoimmune disease.  Here’s her clip. :)


Press Release:

AARDA LAUNCHES “MY AUTOIMMUNE STORY” VIDEO SERIES

Emmy-nominated Actress Kellie Martin Shares Her Story, Calls on Others to Share Theirs, Too

New Survey Reveals Need for Increased Awareness/Education of Autoimmune Disease
DETROIT, March 28, 2013 – The American Autoimmune Related Diseases Association (AARDA) has launched its new “My Autoimmune Story” video series on its YouTube channel with the first story contributed by AARDA’s longtime spokesperson, Emmy-nominated actress Kellie Martin.

Part of AARDA’s 2013 March is National Autoimmune Awareness Month activities, the goal of the new series is to give the 50 million Americans afflicted with autoimmune disease (AD), as well as their families and friends, a national voice and platform to share their personal story.

“Preparing and sharing our personal autoimmune stories will help build critical mass and focus national attention on a major disease category in this country that is often overlooked,” said Martin, who has served as AARDA’s spokesperson since 1999. “Imagine the impact we would have if just one percent of the 50 million Americans suffering from autoimmune disease uploaded a video… that’s 500,000 stories.”

AARDA hopes by collecting and featuring these short videos, it will help educate people about the widespread impact of ADs, the difficulties in getting a diagnosis, the family or genetic component and the financial and emotional burden of living with these chronic illnesses.

AARDA is asking Americans who have been affected by AD – patients, families and friends — to post a video response to Martin’s video, sharing their autoimmune story in a 1-3 minute video vignette (www.youtube.com/aardatube).

 

Wow, if only 1 percent of the 50 million people made a video….think of the impact of that could bring to raising awareness!!  That’s an incredible amount of people dealing with autoimmune disease in this country. Does watching this make you want to tell your own story? It does for me. Here is the link to go directly to the video * click here.*  If you’re like me and you’ve never posted a video response to a video before, here is a link to a short tutorial that walks you through the steps pretty easily  * click here.*

 

Sondra DuBose’s autoimmune story. Check it out :)

 

I’m totally nervous about doing this but I’m going to do it. Are you ready to tell your story too?