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Fear & Small Fiber Neuropathy

Fear & Small Fiber Neuropathy

Fear. It’s almost all consuming today. For the past week or so I’ve had this uncomfortable buzz in my arms. It starts on my shoulders blades and goes down the backs of my arms, then swirls above my wrists and onto the palms of my hands.

I’ve never had this type of symptom before, but I recognize the pain. It feels like being shocked from an outlet. A million years ago my hand slipped when I was plugging in a lamp, and my fingers pushed forward and made contact with the prongs when they were already part way into the outlet. A zap that made me jump and hurt like hell; electricity. That’s what this feeling is running down my arms, and with each day that passes it gets stronger. I have so many different weird things that happen to my body that I’m never surprised when something new pops up. But when it stays, I get worried. Now with this feeling buzzing through me non-stop I’m starting to get really scared.

At my last neuro visit my doc talked to me about getting genetic testing. He said the words amyloid and genetic and I remember thinking ‘huh?’. ¬†After a decade of being sick and eventually KNOWING what was wrong with me, (dermatomyositis and small fiber neuropathy) I wondered why I’d never heard these words before in relation to me. He asked if I wanted to be tested to see if my small fiber neuropathy was amyloid or genetic. Or amyloid and genetic?? I was nervous and my brain was so busy thinking that when I left that appointment I was like, what did he say?? I hate that when I do that. I should record my doc visits because I do that a lot; I get home and try and recall the conversation and yah…

It’s been a few months since my new neurologist said the words amyloid and genetic, and I said yes to the testing but I heard nothing back. I’m guessing my insurance said no to it. I figured, well the next time I see him I’ll be prepared. I’ll look it up and have questions. And time went by. Now- the buzzing arms. I looked up amyloid and didn’t like what I saw. It sounded like me. In all of my reading over the past 5 years or so, I never saw the word ‘amyloid’ anywhere, but if I did I would’ve known 5 years sooner. It fits. All of the crazy squeezing sensations, feeling like I’ve a compression stocking over my body and it’s squeezing like a snake, the immediate sensation of super-gravity; feeling like I’m being pulled into the ground with g-force like pull and having to go flat to relieve it….it’s hard to live life if you have to keep laying down. All of the weird dysautonomia stuff. I’m going to have Big C go in to the appointment with me tomorrow. I need his brain, his memory retention lol, and the moral support.

Alright it feels good to write it down. I’ll be back. ūüėČ

 

 

 

Put yer eyebrows on foo!

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. ūüėÄ 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

 

 

 

 

Chronicles of a New Sick Chick

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.)

 

When Depression Stops You In Your Tracks

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.

 

Please Stop The Pain For Chronic/Intractable Pain Sufferers

Please Stop The Pain For Chronic/Intractable Pain Sufferers

I know, I’ve been invisible for quite a while now.. Still battling depression, it’s an ongoing thing. I need to get back ‘out there’ and posting is one of the things I need to do to feel good. I have a list of people I need to call/write/hug, and a house to clean, ha!
In an effort to get back into the swing of things, I joined a fantastic site called Chronic Intractable Pain and You. It is an amazing source of support, and a place for advocacy for chronic pain sufferers. I’m going to make this post short and sweet, and place a link to sign a petition. Please at least check it out, read it and if you agree, please sign. We need 10,000 signatures and are at around 900.
Thanks in advance, and I will be back!

Please click on the picture below to take you to the petition =)

Make a wish!
Counting my blessings

Counting my blessings

I love this shot. ¬†I really kicked up the contrast and colors, but even with no touch up, it is a pretty flower. ¬†These past few months for us as a family have been extremely challenging. ¬†Lot’s of illness, family issues, money, surgeries, pain, I need to come back to simple to get through all of this. ¬†As usual my Big C is amazing, incredibly helpful, he is my biggest fan. ¬†I’m his although he says he loves me more. ¬†pffff, haha.

I’m recovering from one of the worst intestinal bugs I’ve ever had. ¬†It’s been about 2 weeks and I’m FINALLY starting to be able to keep food down. ¬†Well, I lost weight!! ¬†I’ve been stuck at a certain weight for 3 months now and this illness got me down 14 pounds, woot! I wouldn’t recommend the ‘barf and poop off the pounds plan’ but I got it for free so I’ll take it. ¬†ūüôā ¬†I went through a high fever and much pain and my mind would roll and roll whether I was awake or not. ¬†I remember thinking, Is pain an emotion? ¬†At time when the pain and sickness is so bad that I don’t think I can do it for one more minute-I can feel the depression like a physical pain. And when my body starts to heal of course the cloud gets lifted and even the pain doesn’t feel so bad. ¬†You’ll have to excuse my ‘whoooaaaa’ little epiphanies, my brain is running behind a little bit. ¬†I’m taking it minute by minute and getting back to simple. Family, flowers, all the things that make you smile.

OK. I’m coming back. Again.

until next time

I’m still standin. (yeah yeah yeah)

I’m still standin. (yeah yeah yeah)

Another month has gone by and lately I’ve been hyper-aware of how fast it’s flying. Markers are infusions and doctors visits. Everything in between has been an effort to make it through another day. It’s no way to live. ¬†My depression is a strong opponent. ¬†Each win for the other side sees me sliding down deeper and deeper. ¬†The fact that I’m so aware of this leaves me feeling defeated. Why aren’t you doing something about it? ¬†Why haven’t you scheduled an appointment with a therapist, the dentist, Bean’s eye doctor??? ¬†I feel paralyzed and that makes me feel even more weak. ¬†As you can tell, it’s been a time of introspection and one that is not leaving me feeling satisfied with my thoughts.

I often wonder how other people do it. How do they do their life while battling constant illness? Do I have it tougher than everyone else? A big no to that one. I find myself comparing others that come in to the infusion center. ¬†I infuse 3 days in a row per month; between 6 and 8 hours each day. It’s a long time in a recliner and I learned early on that sweats and comfy jammies were the way to go. ¬†Function over form. ¬†I never thought I would utter those words, it’s something I’ve heard Big C say eons ago when we were getting ready to go out and I was complaining about my heels pinching me. ¬†He mentioned that guys are all about function over form. ¬†What a pain in the ass it must be to be so uncomfortable… hahaha. We have to look good!! ¬†Thank goodness men and women are so different. ¬†Anyway, this last infusion I got there at 8:30 and sat down, wrapped myself in one of my throws, kicked off my slippers, yes slippers, and settled in. ¬†With my hair up in a pony and no make up on, I was suddenly painfully aware of how frumpy I felt. ¬†By 9:00 a few more patients came in. ¬†Each one with a small bag hanging on their IV pole. ¬†Dang it, why is mine so huge… ¬†A young woman sat next to me. ¬†As the nurse covered her with a blanket out of the warmer, I noticed her shoes. ¬†She was wearing a pair of the cutest patent leather Mary Janes I’ve ever seen and they had about a 3 inch heel. ¬†I look at my slippers and felt embarrassed suddenly by my at-home-in-bed-ensemble. ¬†Her clothes were office casual and she was wearing make up, of course. I felt keenly aware of every hair that was out of place on my head. For the rest of the day I was aware of everyone coming and going. Each person seemed to be happy and have it together. ¬†Dressed for work or at least not in their jammies, it was driving me nuts. Was I sicker than all of these people, or was it my frame of mind? Maybe I am sicker-I’m the first one there and the last one to leave. Most that come in are getting Remicade which takes around 2 hours or they’re getting an infusion of iron. My treatment is pretty aggressive. But, I know in my heart of hearts that my thinking is skewed and is keeping me down. I’m not the only one suffering, it’s time to change how I’m going to react to each symptom. I can’t let this keep me down. ¬†It’s time to pull up my bootstraps and do something about this depression. ¬†I have amazing family support and God on my side too. ¬†I didn’t make any New Year’s resolutions but I am going to work on my mindset and keep in touch with those who love me. ¬†Two biggies.

I’ll be back before the month is up ¬†ūüôā

Dark Day

Dark Day

I woke up this morning just feeling the depression before I even had my eyes open all the way. I’ve been battling it for weeks now, but today is/was different. I felt like I’d already lost the battle and I hadn’t even gotten out of bed. I know this is a chemical thing, and I also know it is very selfish of me to entertain it, I just feel powerless today. My pain is very high. I feel poison running through my veins. It’s the only way to describe this feeling; I can feel it running through my veins. I’m itchy. I’m restless. I’m a mess.

I have so many things to be thankful for, and to be grateful for. My family. Are. Amazing. My partner in this life is a saint to be putting up with even a fraction of all the shit I seem to be throwing around lately. He is my heart, my reason. The Bean is amazing as always. I feel the most guilt over her. I feel like I am not giving her what she needs. I’m always sick. I imagine us going to the library, to the park, heck, even just to the store. But ‘Gramma is sick’ is what she hears. Big C corrects me and shows me just how happy she is. My mother is always there for me and Bean. She takes her to the park the library, the mall. I am forever grateful.

I thought if I sat down and tried to put into words what is making me itch, causing me pain that i would feel better. I think the only way I’m going to feel better is to consciously choose to be happy. That sounds so simple. And impossible today. Is this depression? Or is it guilt. I feel so guilty for being sick all the time.

Depressed and optimistic, is that possible?

Depressed and optimistic, is that possible?

 

I have dropped off the radar again. ¬†Not intentionally; ¬†the days just seem to meld into one long day, and I’ve been so sick, time is getting away from me. ¬†I haven’t talked to my best friend in at least a month. ¬†Again, not intentionally. ¬†I’ve written so many ‘I’m sorry’ emails in the past, I just don’t know what to say anymore. ¬†I feel extrememly guilty about isolating, but at the same time, I can’t seem to stop. ¬†I had a horrible realization a few days ago, and it was-I make it through each day and try and get well enough to make it to my next doctor visit. ¬†I actually missed my last one. ¬†I couldn’t get out of bed so C went and picked up my prescriptions. ¬†This is no way to live, I feel powerless to change it.

Between non-stop flaring and being a momma, I have no time for anything anymore. ¬†Facebook, my Christian groups, Flickr, television, nada. ¬†For those who aren’t computer-heads it’s not much of a big deal, but the computer has become part of my life since becoming ill. ¬†It’s my ticket out into civilization, lol.

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Optimistic and Reconnecting

Optimistic and Reconnecting

the city2

I can honestly say these last few months have been pure torture. Pain, sickness, stress and depression.¬†No¬†exaggeration¬†there. ¬†And yet, I feel optimistic. ¬†Why? ¬†Because God is with me, and the rheumatologist at the teaching hospital ROCKS!!! ¬†I asked him if he’d be mine, and he said yes! ¬†My new rheumy I mean. ¬†Big C approves ūüôā ¬†I’ve never had such instant access to a doc before. ¬†In my experience, you call the office and they have a system of blockers. ¬†The front desk, then the assistant. ¬†You don’t get to speak to the doc him/or herself unless you make an appointment. ¬†I might get some flack for that, but I was an assistant and we were taught that in school. ¬†It is your job to keep the patients away from the doc so he can get through his day. ¬†And I mean patients calling in, not the ones in the office, lol. ¬†Docs are busy and they always have a full schedule. ¬†So medical assistants are crazy-busy and work especially hard. ¬†Next time you go to the docs, let them know you appreciate them. They do all the behind the scenes work that no one sees. ¬†Stepping down from the soapbox. ¬†Anyway-the hospital has an e-chart system. ¬†I always said I would never want my medical info online and now I love e-chart. ¬†You can see all of your test results as soon as they come in, you can email your doc with any questions, and mine gets back to me THE SAME DAY! ¬†Wee hoooo! ¬†OK, it’s been a while since I’ve been here so I need to get my thoughts together and pick up where I left off.

New Doc told us to email him as soon as my rash came back. ¬†On our previous visit, I brought pictures of my hand rash, knuckle-red-scaly-yuck, chest rash and my legs when they turn all pink/red. ¬†He already told us that it’s really hard to diagnose retroactively. ¬†After seeing the pics you could see the wheels turning. ¬†He told us that there are two paths to take with treatment; IVIG therapy if it’s dermatomyositis or ‘the next step’ if it’s RA, Still’s. ¬†He said since I’ve already tried and failed with methotrexate and Imuran, it’s the next step. ¬†I didn’t ask which med for the RA, I was overwhelmed with his efficiency. ¬†I found out that when my muscle symptoms and rashes first started I could have had a muscle biopsy to find myositis. ¬†Now, he says, I have plaquenil and prednisone in me for 3 years it would mask the results. ¬†So I’m scheduled for an MRI of my femur. ¬†That should show disease. ¬†I’ve gotten set up with an¬†ophthalmologist¬†because of the double vision that I have. ¬†Turns out the yearly and baseline eye exams that I read about when I started plaquenil really ARE needed. ¬†My (old) rheumy said I didn’t need them, that the percentage of eye issues was so low. sigh. ¬†So I’m getting checked for toxicity in my eyeballs. ¬†I’ve got an appt. with the Derm to biopsy my rash, a bone density scan, and a neuro appt to rule out Myasthenia Gravis. ¬†I’ve only lost my legs a couple of times and fallen down the stairs but he wants to rule it out. ¬†I feel like I struck gold in the healthcare hills. ¬†Bout time and I deserve it!

The hospital has a tram that takes patients from the top of the hill to the bottom. ¬†And vice-versa. ¬†It reminds me of the ride at Great America that takes you from one end of the park to the other. ¬†Boring, but you take it anyway. ¬†It was a beautiful day so I asked C to pull off at the vista spot so I could get some shots of it. ¬†So we got out and I started snapping away with my soon-to-be-broken camera.¬†yes, broken. and this was my point and shoot. ¬†my Nikon D60 is laying in it’s bag, broken too…

weeeeeee
weeeeeee

I noticed when I was resizing this that there is a person on board and it looks like he/she is looking at me.  It looks kind of ghostly actually, spoooooookyyyyyy.


through the treees

This next shot is one of the tram but with many, many trees in the way. ¬†Even though it goes along that wire pretty slow, I was panicked that I wouldn’t get a shot. So I kept my eye on the viewfinder while screaming over to C “where’s it at? Is it coming yet? Argghh, all I can see are trees!!!” ¬†Good times.

Everything in our backyard is either blooming, budding or just screaming to be photographed. ¬†It’s been driving me nuts so I’ve channeled that creative energy into editing my old photos. ¬†I have a couple thousand on this computer but it only goes back a few years. ¬†I have every great pic of my kids when they were younger sitting in a dead desktop comp on my closet floor. ¬†But-I was visiting my dad a few days back and in his iPhoto are shots from the 90’s!!! ¬†I almost started screaming, my kids! my kids! ¬†Instead I said in a high-pitched squeal ‘Can I burn all of these on to disk?!?!’ ¬†He didn’t have his hearing aids in and I startled him, lol.

Alright, my eyes are blurring. ¬†I’m on the 3rd day of a migraine. ¬†This is a first for me. ¬†I’ve had a weird head pain that lasted for months, but this is a true blue migraine. ¬†I’m sitting here typing in my J-Lo pink glasses…Yah, I think it’s time to buy a new pair. ¬†I’m coming back tomorrow. ¬†I need to keep writing or I’m just going to isolate again, and I just can’t have that.

Until next time,

2michelle


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