Month: January 2015

[Link] “Help, my friend won’t stot having Fibro at me”

alwaysabigail's avatarLife according to Abigail

This has been doing the rounds on a few sites now, but it’s just too damn good not to share. As someone who’s been in the other position many times, I find this incredibly satisfying.

http://thatbadadvice.tumblr.com/post/107819176519/help-my-friend-wont-stop-having-fibromyalgia-at

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Small Successes

I’ve been trying time and again to make sure me and my husband are eating healthy and taking care of ourselves. This is a real challenge. We don’t have a kitchen, I’ve pieced together something with mini fridge, a hot plate and a toaster oven and I can really make it work but it’s not easy. The only counter space we have is a nightstand that kills my back to bend to and my knees to kneel to and only has enough space for a cutting board. My husband is at work or driving to or from work 12 hours a day.  I used to go with him and tried bringing sandwich makings but the guys there never put anything back and I had to clean counter space every time I wanted to eat.  I gave up and we went back to eating out and loosing money. I came up with a new lunch plan which would work if I had the energy and time.

Unfortunately I can’t wake up at 7 am and cook 2 meals for two people, spend an hour in a car,  go to the gym, spend the next 6 hours dealing with an overwhelming amount of stress and people or working myself, spend another hour in a car, do dishes at 10:30 pm and make dinner. I’ve tried again and again but I just don’t have it.  This isn’t suprising. That’s a lot for a fibro warrior but we need to be healthy. The only option at this point is for me to stay home so I have more time and don’t get worn down by the hustle and bustle of my husband’s job. This is a problem though. My gym is walking distance from hubby’s work and the only reasonably priced one near home has scarily old equipment. Worse than that this means spending 12 hours a day 6 days a week completely alone. Completely alone with nothing to do in my father’s house day after day,  exactly what caused me to attempt suicide for the first time when I was 12.

This has put me in a deep depression for a week,  I’d done nothing productive, hadn’t showered, brushed my teeth or my hair and I was barely eating. I decided that this isn’t who I want to be,  this isn’t who I am.  I love to be clean,  I love food,  and I love to take care of and support my husband. I haven’t been able to do that. I have a tendency to try and fix everything all at once and I know I can’t do that. Being aware of my limitations I was determined today I would shower, brush my teeth and feed myself. I accomplished all of these things and I couldn’t be more proud, I am terrible at celebrating small victories but today…..today is the day I embrace and celebrate myself. I am a warrior.

Angry With My Doctor

It’s been a while since I’ve written. Too much to share to gather my thoughts I suppose. But I am just so angry and dissapointed in my rhuemetologost that I can’t hold it in.

I’ve been having some trouble on my trazodone, the most recent medication I’ve been using to treat my fibromyalgia. It doesn’t help too much with pain, takes the edge off just enough that I can attempt to be functional. Which I suppose is a blessing but as I’ve mentioned before I noticed it was causing some nasal swelling at night making it difficult to breath and therefore difficult to sleep. She suggested pre treating with benadryl and if that didn’t help we’d have to switch to a new medication. The benadryl helped but I woke up so groggy and irritable it just wasn’t going to work. I stopped taking the benadryl and began waking 10 + times in the 8 hours I try to sleep.

I sent my rhuemetologost a message about this today. The response I received was that she wasn’t a sleep specialist and I needed to discuss this with my Primary Care Provider or see a sleep clinic. ….

UMMM… HELLO?!? What happened to trying a different medication? For that matter what happened to you telling me in our first appointment that if I was still having trouble sleeping on the medication you were giving me that you would try muscle relaxers for bedtime?!

I’ve literally felt like this woman has gotten more and more fed up that her solutions aren’t magically fixing my problems, and now she seems to have actually given up.  Given up without even trying some of the things that are in her head. If she’s frustrated that nothing is working and that I’ve had a negative reaction to everything she’s put me on how the fuck does she think I feel? The worst part is I’m seeing this doctor because of all of the wonderful reviews people left about her ability to manage fibro. If someone “so good” at this is giving up what’s left for me?

The fun part, I can’t get a new Dr.  I had insurance through covered California and with our decrease in income when we reapplied we got Medi-Cal. My husband has his cards and all his info to get coverage (he’s gone to a Dr.  3 times in the 4 years we’ve been together) but I  seem to be lost in the system. I am supposed to be covered but have no way to prove that and I desperately need to get back in to the doc. 

And the worst part is with all of this I’m too depressed to jump through the Medi-Cal hoops to get this sorted out. I am for-going basic care.  I don’t know the last time I showered or brushed my teeth and have gone multiple days without most of my meds. I just want to climb into a tub and cry while my husband bathes me but unfortunately again we don’t both fit in our bathroom, so if anything is to get done I have to do it myself. The lack of hygiene is beginning to hurt. My teeth, my crotch, my skin. I am falling apart, I am broken.

Tangled Pile of Thoughts and Emotions

Today my physical pain is taking second chair.  I can’t even begin to think about what hurts and how much.  I have spent at least the last hour sitting in our parked car by myself. At work with my husband and he needs help because they’re short staffed. I help a customer and have questions. I keep getting cut off before I finish and given an answer that doesn’t help me with my question. I make a small mistake and then was told that I wasn’t asking clearly when he wouldn’t even let me get a whole question out.  I was already panicked, having terrible anxiety from interacting with a stranger and not knowing what the fuck I was doing. But being blamed for not asking clearly afterwards. I went from scared/nervous to scared/nervous and upset. I went to the bathroom, crouched down and closed my eyes. Taking a few minutes to myself to calm down. I try to get myself back together to deal with people and I just don’t have it in me yet, so I sit back down. Then my husband knocks on the door to use the bathroom, I come out and he asks for a kiss, not realizing how bad the last bit had upset me.  I turned and gave him my cheek, he asked what was wrong and I had no words to explain what was happening inside me.  I kept walking down the hallway and he used the restroom. I tried to go back into the main room but couldn’t do it.  I squatted down against a wall again, still trying to get a grip on myself. My husband walks by and asks what’s wrong again, I tell him everything that just happened with that customer. He says it wasn’t that bad a minute ago.  And I just looked at him,  I couldn’t explain what him blaming me for the miscommunication did to me when I was already falling apart. He told me he knew it was stressful and then said but all this right here while gesturing to me with an angry look on his face. He then walked off and closed the door. I followed right behind and told him he might as well give me the car keys. He looked pissed and handed them over.  I then began getting text messages every few minutes about how stressed he was.  I know that’s true it’s why I didn’t automatically blow up when he blamed me for the miscommunication, I know it was panic brain;  but for him to get angry with me for being upset crosses a serious line and he’s wanting sympathy and support. He knows about me mental health issues, he agreed that he knew he was going to have to deal with their consequences forever and now I’m getting yelled at for just that.  This is not what I expect from my partner or someone who loves me especially when they have first hand experience with those issues. Now I’m an hours drive from my home, I don’t have a lisence and the thought of being around my husband makes me want to hurt him. And there are 7 hours left til we are home… where we share a single room. I don’t know what to do with myself or this day.

Still

I’m still super sore today. Pushing a 9 on the pain scale in my worst moments. I pushed myself to finish the first portion of the work I’ve been trying to do for my husband’s place of business. I took a lot of breaks.  I was doing data entry so I got up to stretch a lot.  Man I am in bad shape though.  I wish I was able to file what I have entered now. I’ve also been dying to tidy up the hallway and clean the bathroom. Apparently that will have to wait for another day. I realized yesterday that I cut my dose of Trazodone in half because it was making it so hard to breath at night. That probably explains the pain increase. It doesn’t seem to help too much for pain but enough that I notice half of it missing.  I sent a message to my Rhuem she suggested trying to pre treat the congestion with benadryl prior to taking my meds at night. So I’ll be giving that a go tonight and see if I can hang with my full dose of trazodone. So I guess I’m done for today but as usual the day isn’t yet.  Four hours til I’m back home. Hopefully I can manage to just exist until then.

Classic

I’m dealing with a very classic fibro flare right now.  My skin feels bruised to the touch all over my body and I’m so achy with movement. The fatigue is terrible, I had a bit of coffee and feel antsy and jittery but still can’t muster any actual energy to get things done. I don’t technically work but my husband works at a bit of a boys club where a lot of small things and technology based things fall to the to the wayside. When I’m there I like to help; primarily to keep busy and repay the courtesy of letting me take up room in a busy establishment and giving me the opportunity to not to be stuck at home by myself ALL THE time.  I’ve been out for about two weeks like I’d mentioned before so all that work has piled up a bit. I’d like to put a dent in it today but…ow.

The Most Painful Panic Attacks

Panic attacks certainly aren’t pleasant but I could never say they hurt prior to my fibromyalgia diagnosis. I managed to make a little progress and got a panic attack due to a situation happening near me.  It started to feel like I had swallowed a sword.  There was a straight line of sharp pain directly through my middle and any bending or rotation made it worse. It’s mostly better but my nerves are all on end and I’m uncomfortable and exhausted. It’s not 8 PM and I’m ready for bed.  One panic attack was all I have in me today. I won’t be home for at least two hours, goody. Sitting up is just a tad too much.

And It Begins..

Welcome to my first post.  As I begin this I’m noticing that just setting up this blog was enough to make this difficult, so it won’t be long.  Today I’m struggling with lack of sleep,  I have been on Trazodone for a couple weeks and just realized that it’s been the cause of my night time stuffiness and has been negatively impacting my sleep.  I’ve been stuck in my room for about 2 weeks,  I normally go with my husband to his work but I had a couple bad days and then the bathroom at his work was out of order and that seemed like too much of a challenge for me.  The bathroom is fixed and I’m back. After two weeks of feeling lonely and stir crazy being around this many people has been exhausting. It’s 5:15 and I’ll be here until about 9:30. My eyes are burning and I need to medicate,  so that’s all for now. I’ll be back soon with more crap.