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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

 

 

 

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.)

 

I asked and He answered

I asked and He answered

Hey all. ¬†It’s been a¬†little¬†while…I’ve been conducting an experiment that sounds ridiculous, and now I’m starting to think it is. ¬†My PC told me a while back when I wanted to go up on my pain meds that he thought that I would be in the same pain without them as I am with them. ¬†I thought he was nuts. So he referred me to a pain clinic and on my first visit after describing all of my pain, the doc told me he thought that I was hypersensitive to the drugs. ¬†Whaaa?? ¬†I have never heard of this, and this guy must be a smooth talker because after a while I was nodding my head and going uh huh, uh huh. ( I just found an article that explains Opioid¬†Hypersensitivity Syndrome or Hyperalgesia here. )

So, I am in the process of dosing down off ALL pain medicines to see if they are causing me pain and making me sick. ¬†Right about now I’m thinking, um no. ¬†I am close to being off of them (this is the last week) and man that was fast. ¬†He had me taking 30% less each week. ¬†I had to put a clonidine patch on to help with the withdrawal. ¬†These are the times that I question what the heck I am doing. I am in pain, and I’m in withdrawal, and I am barely functioning. As my kids say-this sucks.

But, I didn’t get on here to whine. Well, maybe a little… I wanted to write about my experience the other night. ¬†My jaw was killing me. Like a 9 on the pain scale. And my pain scale is completely different now. ¬†What was once a 9 is now like a 4, if that makes any sense. This pain is from a tooth gone completely wrong. A wisdom tooth too. Anyway, I’m holding my jaw, I’m crying and I’m thinking I can’t believe after everything I’ve been through I’m being taken down by a tooth! ¬†So, I’m hurting and there’s no amount of orajel that’s going to give me any relief and I start to pray. ¬†I’m asking God to please help me. ¬†I can’t even see the pain is so sharp. ¬†I have to be able to be there for the Bean. Please help me. And, my pain just diminishes. Just gradually easing up and poof. Gone. ¬†I praised Him and thanked God, thank you, thank you!!

Sometimes I forget to ask God for help. Sometimes I feel selfish when I do. ¬†He is showing me that He does love me.¬†Unconditionally! I just wanted to tell everyone to ask God for help when you need it. ¬†And yes, there are times when we don’t get an answer, at least that’s the way we see it. But I think that is the answer. Some things we have to figure out on our own to learn something. ¬†Make sense? ¬†Maybe ūüôā

Until next time

A nightmare come true-speechless

A nightmare come true-speechless

I’m sick. I know this much. My headache is finally gone, it feels gone. ¬†Is it gone? ¬†I keep rolling over, trying to go back to sleep. ¬†He’s shaking me. Do you know who I am???? Over and over again. ¬†I just pull away. ¬†All I want to do is sleep while I can. ¬†I can’t feel the pain anymore. ¬†You’re not making any sense!!! I can’t understand you!!! He says. ¬†I look at him and I don’t know his name. ¬†I didn’t know I was talking. Wasn’t I just sleeping? Why does he keep waking me up? I realize the importance of his questions. ¬†He is frantic. ¬†His eyes are wide. I love this man, I know this. ¬†But I can not tell him his name.

He is trying to push sweats on over my shorts. ¬†I’m taking you to the emergency room. I’m pushing his hands away. ¬†Do I have clean underwear on? I’m frantic now too. I’m scared. Yet I’m worried about my underwear. I’m trying to talk but no words come out. Just strange sounds. ¬†My daughter comes into the room. ¬†She looks so scared, I feel so bad. ¬†I’m scaring everyone. Stop it! ¬†He asks me, do you know her name. ¬†I know I have to get this right. ¬†It’s important. I say a name. It’s a word!! I said something! But they both look at me. ¬†Sad. ¬†I got the answer wrong. ¬†Now I’m trying to get ready to get in the car. ¬†I’m freezing.

Hey Mom? I turn around real quick and I see my son. ¬†No, I say. ¬†Then I say, I’m ok. ¬†The words came out of my mouth. ¬†We are driving fast, I think I’m crying. ¬†I know that something is really wrong, and I’m scared and I hurt now. ¬†I feel the pain, and the air smells cold. ¬†It’s freezing my nostrils and I can’t stop crying.

We’re here. ¬†I don’t really know what they’re saying. ¬†She says, can you answer me? ¬†I open my mouth and I’m straining but it doesn’t happen. He’s pushing me through the double doors in a hospital wheelchair. ¬†It’s triage. ¬†More questions, more straining. By now, I’m tired. ¬†I just want to go to sleep. ¬†The next thing I remember is the nurse with the mask on. ¬†It covers her mouth but it also has an eye shield. It presses so hard that it pulls her bottom eyelids down and she looks scared. ¬†This is not good. ¬†Needles, IV’s being poked and prodded. ¬†I notice that there is no color. ¬†I’m seeing everything in black and white and I don’t want anymore. ¬†I want to go home. ¬†Doctor comes in and I can’t talk to him either. ¬†This is a freaking nightmare. ¬†He has sad eyes and he is short. ¬†Very small. ¬†He tells me they have to do a scan and then a spinal tap to rule out meningitis. ¬†No, I don’t want this. ¬†He reads my mind and tells me it has to be done. ¬†We have to go to another area to do the scan, and it feels like the room just spins around like in the old TV shows where you pull a book and whoosh. ¬†You’re on the other side. ¬†They have something wrapped around me and tell me don’t move my head, lay still, as they pull me sideways and I slide down onto another table. ¬†I see people on the other side of the glass. ¬†I can’t understand what’s happening. ¬†I can’t hear. ¬†Everyone looks urgent, harried. ¬†I feel like I’m in a bad dream. ¬†I don’t see any color, just black and white. ¬†I’m back with Big C. ¬†I know he’s Big C.

*Then there are two women who are pulling me down a dark hall.  There is a guy who is mocking them.  A Russian lady is talking to me as the other two are climbing under my gurney and wrapping this giant blanket around me like swaddling a baby.  They have a gleam in their eyes.  They are up to no good.  I start fighting them, pulling against the blanket trying to get out.  They will not get me in that room.  We are in some kind of a basement, and what they want to do to me-I know that if they get me in there, I will be dead.  *(I find out later, this part was a hallucination that I had)

I open my eyes and the doctor and the nurse with the uncomfortable mask are prepping me for the spinal tap. ¬†He tells me to grab C’s arm and his and pull. ¬†Harder!!! No push against my arm, harder!!! I am screaming. ¬†I had one years ago, I don’t remember it hurting this bad. The room is all yellow and dark. ¬†I want to know why the lighting has changed after everyone got on masks. ¬†We are quarantined. Everything is so surreal. He is saying they have to be sure. ¬†We have to wait for results. ¬†That’s all I remember. I remember it now like you remember an awful dream. ¬†The one’s that seems so real it gives you a stomach ache.

I woke up in a really large room. ¬†It was bright and sunny and my Big C was there. ¬†I’m like, what happened? ¬†You have meningitis, he tells me. ¬†I’m in a room that is droplet something, can’t remember the term. ¬†But everyone who comes in has to wear a mask and gown. ¬†I’ve got cooties. ¬†At least I don’t have that awful feeling of surrealism spooking me out. ¬†I can talk. ¬†I am scared, but in the oh-my-gawd-how-the-heck-did-this-happen-way. I immediately remember the women, and the Russian, and the guy, I find out that I had a hallucination. ¬†They had actually sent me to get an MRI and I gave the techs some trouble and was “making noises’ and kicking the inside of the machine. ¬†I was so embarrassed!! C said don’t worry about it, you were not you and you didn’t know what the heck was going on. ¬†I got the MRI done a few days later and me and the tech had a laugh over it.

I ended up staying in the hospital for a week. ¬†I had meningoencephalitis, and am just hugely thankful that no major damage was done and that I am here in my bed, typing away. I’m really tired, feels like my ears are plugged and they are ringing at the same time.My brain fog is so thick you could cut it with a knife. ¬†But I am thankful, so very thankful that God doesn’t want me yet. ¬†There still things for me to accomplish here and I’m glad to know it.

Infusion, Confusion, Intermission…

Infusion, Confusion, Intermission…

I am in the process of getting a new treatment this week. It’s called IVIg and it’s exciting and it sucks. When I say it sucks, it’s because I’m the lucky ‘50%’ that the nurse said would get a killer headache. It’s the worst one I’ve ever had. ¬† I am banking so much on this to give me some good days that I’m so afraid it won’t work. I’ve had two straight days of infusion, sitting in the chair for 7 hours praying. Today was the third and last day for this month and in true Michelle form, we overslept. Both of us. We got ready as fast as we could and jumped in the car. ¬†Big C called the infusion nurse who told us it was too late (we would have been an hour late) she said she was alone today and if I came I would throw off the afternoon schedule. Sooo, I go back on Friday. Well, my body decided to go into full flare, and something else I’ve never felt before. The new ‘good’ cells must be in full attack mode of my bad cells. ¬†I am red, head to toe, have the worst headache ever and hurt EVERYWHERE.

This is not a good post, not my best writing for sure. ¬†I’m having a hard time seeing right now. ¬†I just wanted to check in, let everyone know I’m still alive. ¬†All my Facebook friends, I’m alive! I just don’t have the strength to even get on the computer. ¬†It’s hurting my eyes. I’m missing talking to everyone!! ¬†Oh and Miss M-you are so wonderful too!! I saw your comment on the picture from my phone. Love you! ¬†Miss E-I got your postcard, thank you! I love you!! You know I’ve been really sick and out of touch when I’m using my blog post like an email….

I’m posting a video I found about a woman’s experience with her IVIG treatment while she’s getting her infusion. ¬†It is not me in the video =) ¬†I’ll be back after my ‘intermission’. I’m praying that tomorrow I feel human.

Taped From an IVIG Infusion Treatment from Stephanie Cion on Vimeo.

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


Hope

Hope

My Angel!
My Angel!

I finally made it to see the rheumatologist at the hospital. I had to cancel my appointment a couple of weeks ago because my dad showed up at my door in a state of dementia. ¬†I didn’t give them the reason why I had to reschedule, and they set the appointment out a few months. ¬†I was so upset. The next day they called with an opening for the following week. ¬†It’s unheard of there so I figure God was listening.

It wasn’t easy getting ready to go. ¬†For the past month, maybe even two, I have been mostly horizontal. ¬†My body is failing me in so many ways it’s hard for me to even talk about it. ¬†I laid in bed until the last possible moment time-wise and then climbed the stairs to get in the shower. ¬†I hate to say this or even type it but showering is near impossible for me. ¬†I have to use a step stool to sit on, ugh, I won’t even go there. ¬†So my and C finally get into the car and we are almost on time for the hour and fifteen minute ride. ¬†I’m out of breath, sweating like crazy (it was about 40 degrees) and shaking. ¬†All I wanted to do was go get back in bed and close my eyes and pray.

Minutes after meeting the doc I was hopeful.  He LISTENED to me, very important in trying to diagnose.  He asked so many relevant questions.  I felt like I was being heard for the first time in a long time.  He talked to us about the tests he was going to do and wants to see me back in 4 weeks.  I was a little surprised as I thought it was a one shot deal.  I want him as my rheumatologist and am going to ask when we go back.

Since my appointment was the last of the day, their labs and x-ray were closing down.  He actually ran to his office to put the orders in and walked us to the lab.  I have never ever seen a doc go out of his way like that.  I actually cried.  What a doofus, I know.  It felt good to have some hope.  I need answers just as much as I need some relief.

Have you ever had a doc go above and beyond?  If so, is this the norm for your specialists?

Until next time

2michelle

Tenacious Tuesday

Tenacious Tuesday

I used to work in a drug and alcohol inpatient rehab facility. ¬†That’s a mouthful. ¬†Each night I would come in and meet with the swing shift nurses and get caught up on who just came in, what their drug of choice is (that would determine their detox protocol) and who was the troublemaker of the day, there always was at least one, and so on. ¬†These people who came in to detox, they were in for probably one of the hardest things that they’d ever had to do, emotionally and physically.

After report I would go and check everyone’s vitals, see if they qualified for any medications. ¬†Some of the patients wanted to talk, others wanted me to just get the hell out of their rooms as fast as possible. ¬†None of the patients wanted anyone to be a part of their nightmare, as they called the withdrawal process, to see them at their worst. ¬†Most were embarrassed and wanted to make sure that I understood that they weren’t bad people. ¬†I loved my job, I felt that I had found my calling, but I was so soft. ¬†I couldn’t get that hard-ass attitude that was needed when they would try to trick you into letting them break the rules. ¬†Drug addicts are the best manipulators in the world. ¬†I know, I was with one for 10 years. ¬†All of this is coming back to me today. ¬†Today I am in withdrawal. ¬†But I am home-not in a facility, I’m not an addict but a chronic pain patient, and no healthcare team is seeing me at my worst- my family is. ¬†I am dosing down off of a narcotic pain medicine that does not lower my pain levels. ¬†Withdrawal is part of the package, you can’t tell your body to mellow out, I wish you could. ¬†Am I an addict because I take pain medications? ¬†I say no. ¬†I am trying to survive, and have a quality of life that is livable.

I have been through so many different ‘things’, the only word I can come up with, with this disease. ¬†It has ripped me apart. ¬†I have found strength in myself that I have never known. ¬†I have come face-to-face with prejudice. ¬† Hatred almost. ¬†For taking narcotic pain meds. ¬†Some people think that I shouldn’t. ¬†I’m not a cancer patient! To that I say, no I’m not. ¬†A cancer patient has foreign cells attacking their body, I have my own cells attacking my body. ¬†Why would the pain be different? ¬†Because everyone knows what cancer is. and autoimmunity is not that well known. A cancer patient has a chance for therapy to eradicate the foreign cells with chemotherapy and radiation. ¬†It doesn’t always work, but there is a chance for recovery. ¬†I don’t have that chance. ¬†They can’t kill my own cells to stop them, they are mine- not foreign. ¬†There is no cure for me. ¬†I am in the process of finding the right mix of medications to stop or slow down my system from attacking me. ¬†Some days I wish I had cancer.

Wow, what a rant!! ¬†Like I said, I’m in withdrawal. ¬†Self-induced to get off of one medication so I can try another that hopefully will bring my pain level down enough so I can live my life without constant pain. ¬†An article showed up in my email and it is about chronic pain patients with depression. ¬†After reading it I was so pissed, until I remembered-people just don’t get it. ¬†If you are CHRONIC PAIN patient, your pain is there ALL THE TIME. ¬†Acute pain, probably get a scrip for pain meds and then none because the pain goes away. ¬†Chronic pain=always. sigh. ¬†The first paragraph of the article states that ‘they are more likely to stay on them long-term’, duh!! If you find something that works, you stay on it!! ¬†Your chronic pain isn’t going anywhere. ¬†Also, ‘they are likely to become dependent on them’. another duh. ¬†Where are the statistics in this article that states that people with legitimate chronic pain are less likely to abuse narcotic pain meds than ‘regular’ people. ¬†I’m going to have to find that now. ¬†I am a chronic pain patient. ¬†I am on one of the biggies for narcotic pain medication. ¬†It’s not working for me. ¬†I am dosing down off of it so I can stop taking it. ¬†I will try something else. ¬†I’m not stuffing more and more into me. ¬†I’m doing the logical thing. ¬†I think most chronic pain patients would do the same. ¬†All we want is to be pain-free, or at least a tolerable pain so that we can go about living our lives as we used to be able to! ¬†Story below that got me on this rant. ¬†Until next time

Michelle

Depressed pain patients more likely to get opioids: study

Reuters Health UPDATED 2009-11-18According to a new study, chronic pain patients who suffer from depression are more likely to be prescribed narcotic painkillers such as morphine and codeine. Researchers also found that depressed patients were more often given higher doses of these opioid medications, and they were more likely to remain on them long-term. Researchers say their finding suggest that more study is needed on narcotic prescribing practices for depressed patients, especially given that they are more likely to become dependent on these drugs.  Read full story >

via Depressed pain patients more likely to get opioids: study.

I’ll have a zoloft sandwich, please

I’ll have a zoloft sandwich, please

Day 275/365: The Stand
Image by ~jjjohn~ via Flickr

It’s safe to say I can’t stand depression.¬† I mean who does?¬† It sucks, sucks, sucks.¬† I know that it is a chemical tweak in my head, I know that things are better than they seem, I know that I won’t feel like this forever, but even with all that knowledge-it doesn’t hurt any less.

I have people who depend on me.¬† How extremely selfish of me to focus so much on me.¬† I need to pull up my bootstraps, as they say.¬† Or something like that…

How do people do it, I want to know.¬† It’s been months, and I do mean months of joints pain, muscles that won’t relax, muscle pain/burning and weakness, rashes all over my body, feeling like there is sludge or lead in my veins, so heavy, heavy how am I going to make it through the day again?¬† I ask God to help me.¬† Please help me.¬† And He does, sometimes.¬† Other times I’m guessing it’s something I need to figure out on my own.

Sometimes I feel like screaming at everyone around me (that would be family, who always has my back) YOU TRY AND DO THIS FOR 3 F*@#%ING YEARS WITH VERY LITTLE ‘DOWN TIME’ AND SEE HOW ‘NORMAL’ OR ‘YOURSELF’ YOU SEEM.¬† IT’S SO HARD TO BE IN PAIN/FATIGUE/SICK FEELING LIKE POISON OR SLUDGE RUNNING THROUGH YOUR VEINS/COMA SLEEPING/BURNING AND SO ON AND SO ON…¬† I know it’s hard on them too though.¬† It must suck to live with someone who is constantly in some form of pain or sickness.¬† It has to be tiring, and not very fun giving giving giving.¬† I hear this a lot “oh wait, why am I complaining to you when look at all you have to go through”.¬† No.¬† I WANT people to be able to vent to me.¬† I want my husband to tell me all about his shitty day and not feel guilty about doing it.¬† But if you see the bold print above, I must be throwing mixed messages out with my body language and mood.¬† I suck.¬† I haven’t ever said those words, it’s just pops up in my selfish little mind sometimes.¬† Wow, typing this out is cheaper than therapy!¬† Good thing, because the medical bills have drained us, we are broke.

The Big C tells me that it won’t always be this way and I wish I could believe him.¬† I tell him “I know” and give him a hug because he needs to hold on to that and believe it so he can keep on going.¬† This disease has really hurt the man that I love. He can’t stand to see me when I’m writhing in pain and there’s nothing he can do to help me.¬† At least, that’s what he thinks.¬† Just being there and holding my hand is helping me, I tell him that.¬† But he wants to ‘fix it’.¬† It drives him crazy.¬† If the shoe were on the other foot, I would feel the same way.¬† Helpless.¬† It tears him up and it hurts to see him that way.¬† Then I feel guilty.¬† When I think about it, this illness affects us in so many different ways, and offshoots of ways, a lot more complex than I thought.

My body has done some pretty awful and unbelievably painful things to me and each time I would think, it couldn’t get any worse, I have never felt such awful pain, suicide pain is how I heard someone describe it and that hits the nail right on the head. When your body is in pain in multiple places for extended periods of time, the kind of pain that’s a 10 on the pain scale, you’re in the hospital and they are slamming your IV with morphine or fentanyl or demerol because your blood pressure is through the roof due to pain, and even though you’re floating with so much narcotics running through your veins, there it is.¬† You can still feel it.¬† It’s like it’s a mocking you-I’m here to stay.¬† That’s suicide pain.¬† How do you stay positive???¬† How do you get up in the morning and hide the pain face from your kids??¬† How do you stay happy???¬† I try so hard, but I’m in a place now where I’m failing.¬† I’ve been there in that moment so many times, I NEVER would have guessed that my life would be like this. ¬† I just really want/need one of those days where I wake up and feel like the old Chelle.¬† It’s amazing how much that gives to me just having a day, or even a few hours of feeling normal, it keeps me going for weeks.¬† Then I think, I WILL go into remission.¬† And, sometimes I just need to be reminded what normal feels like so that I can start being positive and work towards that.

The Bean is eating her cereal, late, and she is smiling and singing Twinkle Twinkle, in her own way which is totally amazing.  Everything falls back into place now.  She is my reason.  For everything.  Tomorrow will be a better day.

Special thanks to JJohn @ Flickr for the most beautiful flowers

A little privacy please

A little privacy please

Earlier today I’m sitting out back and the woman who lives in the house behind us is watching me.¬† I can tell because I feel that feeling you get when someone is watching you and sure enough, when I turn to look, her head disappears in her window.¬† I’m in my bathrobe at 4 in the afternoon with a case of the most ridiculous bedhead and I’m crying.¬† I see her and I wonder, what is she thinking?¬† Let me backtrack..

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