In the beginning

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This is really raw and my story, my life, everything from the beginning. Not for the weak at heart.

Going through life without Rose colored Glasses

I think the reason I’m starting this particular blog is because I really don’t feel like going to therapy any longer.  I’m 44 years old and have been in therapy since I was 35 and on and off before then.  I’m tired of having to hop the bus to fill out the same form every time with the same results but nothing ever changes.  Why pay money to get somewhere when I can sit at on my recliner and write my issues and life things here, for nobody to read or maybe a viewer or 2 but mostly for myself.

I do need to change my life if I want to live.  I haven’t wanted to live since I was in early high school, maybe even earlier than that.  I didn’t have the best childhood.  I grew up in the projects on the West Side of St Paul, MN. It…

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Knock knock Dawn, it’s your tooth

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Yeah so I have been having a rough day RA wise, been in bed until about a half hour ago, watched a good movie The Grey, Tucker howled whenever the wolves did, goofball.  So I got out of bed onto my recliner, called my sister, caught up with her, good and bad, whatever, changed me mood a little more sour, then out of NO WHERE my tooth starts hurting like really bad, so here I am with my tooth yelling at me, the pain goes all the way to my ear and the back of my head, what makes it worse is that I have a perfectly good script for 60 norcos sitting next to me but I can’t fill it because I have ZERO money, like an idiot I spent my last money on a pack of smokes, it’s my poison.  So not only can I NOT get that script til Friday, I also need to cancel my dental appt because I am out of bus fair on my card.  I’m so happy to be on disability and have no money or car.  I’m really tired of just surviving, I’ve been doing it for 7 years and it’s tiring, I don’t want to do it any more.  I’m not on disability because of my RA I’m on it because when my mom died I went FUCKING CRAZY, I had 2 nervous breakdowns in the span of 5 months, I put myself in partial hospitalization for a month, then I went to day treatment, all the while getting unemployment and taking care of 5 animals.  A woman I met while in partial also folllowed with day treatment, she killed herself, I left the group.  So basically I applied for disability back then but I couldn’t wait, I had to feed myself, pay rent ,the bills and feed my pets.  So I worked temp jobs mostly, I couldn’t find a full time job.  I was an AVP before my mom died, they fired me because of my leave, after I worked temp jobs stressing from day to day wondering if this was going to be the day I’m let go, I did that for 5 years, so damn stressed out, I was about to seriously kill myself, the only thing that kept me alive were my pets, nobody could care for them like me.  I started getting let go, not because my assignment ended but because I was fucking up which was not me, I was losing it, I couldn’t handle stress, during that span of 5 years or so, I first had my left ovary taken out, 6 months later my gallbladder, then I had an intestinal blocakage, week later, I had a heart attack, then later I had a hysto, I have a lesion on my liver that’s growing slowly, I have diabetes, RA, Bipolar, anxiety, PTSD, so I got on the computer and I applied online giving them information since I was 19 and tried to off myself, all hospital, clinics, everything, I had gotten let go too many times and had had it.  I was approved within 4 months, without a lawyer.  I’m thankful for it, I just don’t know how they expect people to live on it. 

I guess I ranted on and on, I guess I needed to get it out, I can just never seem to let go of things, I may let them lay dormant in my memory for a while but someday they come back up, just like people I should stay away from, I stay away for a while but eventually, my soul needs some sort of comfort so I seek it.  Right now I could use some comfort, physically and emotionally.

I’m out……….

Barometric Pressure

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Today is a bad day for RA folks in MN.  I was talking with my friend who has it as well and we decided it’s the barometric pressure that triggers these flare ups.  I thought maybe the dew point and humidity but if we have a/c that takes that out of the air then what can it be and she said has to be BP.  She’s having a really bad time today, I feel bad for her and I wish there was something I could do to help her.  I hope she’s laying in bed not worrying about her class she missed today.  She runs her body past it’s limit sometimes.

Another person that I don’t know personally but I follow her on FB, is having a bad flare as well, she showed pictures of her foot discolored, so I messaged her with my photos from my first flare, how bad my foot was, I didn’t expect anything back from her but she appreciated it and had no idea that RA could do this.  

As far as me, well I’m in some pain, my hands, knees and feet/ankles, I near broke my ankle going down the basement with my laundry basket, it’s funny but I always keep my phone with me just in case something ever happens and I can’t get up and I don’t have life line 🙂

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I wonder if I’m wasting my time with this “blog” seems more like a diary than anything else.  Nobody views it or reads it.  

I took Tucker for a walk today.  I was listening to my music I have on spotify and the song Hurt came on by Christina Agulara.  I started to cry, I hadn’t thought about my mom much lately but that song brings me straight back to her.  When she was sick, I just wanted to make her better so badly, even though I know deep down she wasn’t going to get better, but I was the person who took care of her, I was her medication giver, her feedtube fixer and turn offer. She would be supportive of me right now but I wouldn’t be the person I am now if she would have lived.  I wouldn’t have gone through the struggles, I wouldn’t have gone to the bottom and swam way to the surface if she was still here.  But I would give all that up for her to be here right now, we would go thrift store shopping tomorrow, go to lunch, maybe go to stillwater or redwing.  Shawn and Sally would be in my life, nothing would have changed, we’d probably BBQ on Sunday, Sally and Tucker would run around in the yard, mom, shawn and I would hang out and laugh as we always did.  But yeah, that’s only if……..

Still dealing

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With my infected tooth.  I go back next week to hopefully finish the root canal and be done with that tooth until it gets fragile and needs to be pulled lol Laughing because they talked me out of getting it pulled, when in reality, it eventually will be pulled

Tooth pain is NOT for everyone

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I started feeling my tooth pain Wednesday night, I went to the dentist Thursday afternoon, he drilled a hole to let the pressure out then scheduled a root canal for Tuesday, Tuesday after the numbness wore out my life began a to be a living hell.  Swollen right side of my face, and hot spots where the abscess tooth is.  I go back on Friday, she numbed me up and gave me 2 antibiotics to take.  Nothing helped not even the norco, I’ve been in a norco fog for 2 days.  I called today, I’m on a steroid that is like prednisone.  I hope it doesn’t make me wacky, I do know that after 2 doses nothing has helped, I took 2 more norco, not sure why I’m taking it, maybe just to make me pass out because at this point, that’s all I want to do is pass out and not wake up until my appt.  If it’s not better by morning she said I could come in and she would clean it out.  Only thing is, it’s kind of far way, maybe 25 miles and I don’t have a car.  Maybe I’ll ask my sister, ahahahahaha, that’s funny.

I need to lay back down, it hurts so damn bad.

2nd Actemra Infusion

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Well, aside from my nurse spilling apple juice all over me, it went without incident.  My Dr appt after, however, was not the best.  He said I’m getting progressively worse, that my next fusion will be doubled.  Well I just got my blood test results back and I don’t think I’ll be on actemra any more, my liver enzymes have doubled.

I told him about my shoulder and asked for a shot, he wouldn’t give me one, I was beside myself, I have been in pain for 8 days with this, he told me to stretch it and see if that works.  Needless to say I cried on the bus ride home, probably looking like a middle aged freak.

So what does all this mean? I don’t know, I didn’t really ask him, I’ll email him questions tonight since I seen the results after our appt.  I’m not new to getting news that a medication isn’t working and I’m use to hearing it’s getting worse but progressively worse, I don’t like.  

I knew when I was first diagnosed that I wouldn’t be a normal case or go into remission, my body just doesn’t do things like that.  I’m positive about my treatments but deep down I always feel that they won’t work or that my liver will go wacky and I’ll have to stop not knowing if it would have worked.

So tonight, I’m in pain physically and emotionally, which is most days but I’ve been doing better.

Here’s to better days…

 

“If I am not good to myself, how can I expect anyone else to be good to me?” -Maya Angelou