been trying to be positive…

first, i was going to rant about my doctor. and then i chose not to. then i was going to rant some more, since i saw him again.
but i just want to be happy so i put it off.
then i realized i’d pretty much never write, which is just ridiculous.



in the past week, i had to have a stupid procedure done b/c of the severe dysplasia i have that *might* be cervical cancer — the dr made sure to point out that ‘as of now, it’s not, but we don’t know what these results might say or if anything has changed since the last results.’ then he proceeded to tell me how the lupus factored into making everything worse and that if this keeps happening to me, regardless of if i progress to actual cancer or not, he would want to do a partial hysterectomy so the problem is just avoided b/c it’s so common and such a pain to deal with.
this, after they told me it would be a 30 minute visit — not procedure, but visit. yeah, i sat with just a stupid little paper blanket on for over 35 minutes just waiting for him to get in the room, and that was after i waited close to a half an hr in the waiting room. i was there two hours.
which led to me not being able to go (out of town) to see my guy’s dad in the e.r. — something we’d been planning. so he had to go on his own … way later in the day than he could have if we’d known. he could have been home and not dealt with the dark and the weather on his only day off. the poor guy works six days a week and doesn’t get to really enjoy his time off b/c that’s when he has to run errands and all … go to appts, etc…
his dad is terminal — past the time they gave him — and i’m angry i didn’t get to see him. but we’re doing Christmas there, so that’ll be good.
i guess it was all for a reason, though, b/c as soon as my mom and i left my dr’s appt, we received a call from another doctor to come pick up my daughter. she was with my grandma, who needed to go to the hospital herself. so as i was waiting in line for my pain medicine, i had to leave without the meds and go take my grandma to the hospital and my mom took my kid for the evening.
the poor woman had such low oxygen levels and could barely walk or talk and was disoriented. she made a comment about wishing she’d just been at home. well, i see it as another lucky thing that she happened to have a doctor’s appointment that day b/c then the doctor was able to call the hospital and have a room ready for her when we got there.
of course she argued with me and wanted me to take her home. she did some funny things on the way, but it was scary.
then we get to the hospital and is more concerned about me than herself and kept telling everyone i’d just had surgery (which i hadn’t…it was just a procedure with a local) and made it so i couldn’t push her in the wheelchair.
i’m the only one in town so i’m glad i was done with my appointment at the right time. but i’ll admit i was in pain for the hours i was there.
and then, i had to call my dad, who i don’t *not* talk to, but i don’t talk to him, either… we haven’t really had a relationship in years. he came to the hospital and while they were working on my grandma (his mom, of course), we talked for almost an hour in the hallway. it was good, but just added to my stress — and we all know how wonderful stress is for lupus, right?! ๐Ÿ˜›


then i get home and have to make sure my daughter is all right b/c she had to witness my gma acting that way. turns out the nurses at the doctor’s office were awesome — they took her into a different room and read to her and gave her toys. and besides, she’s really good with my grandma, anyway, helping her walk if she needs it b/c her neuropathy can get so bad. my girl’s really helpful and caring and sweet, but you never know what seeing certain things can do to a child..
then my guy got home and they don’t know anything more about his dad. they claim they tests were so messed up they can’t even figure how to read them … wtf?!
i was just sooo out of it that the day was wasted. i couldn’t concentrate on anything and the next day wasn’t any better — trying to process stuff.
especially when i found out my grandma is moving to florida to be with my uncle b/c my dad’s not close enough and never sees her or helps her and she’s too sick to be living on her own anymore. so while i’m happy about that fact, i’m sad b/c she’s the one family member who (even though she’s a PITA … and she’ll be the first to admit it!), she’s always there for me. she worries more about me than herself and it’s not like she’s healthy — on oxygen with osteoarthritis, among other things… so i’ll be sad when she leaves.
then comes my other grandparents. who have a nameplate and room ready at the most amazing nursing home in town, but they won’t leave their house b/c, well, they’ve been there fifty years. i would be reluctant, too. but my gma has parkinson’s and my gpa has advanced alzheimer’s, so he can’t help her. she fell the other day and he was outside in the garage smoking (a habit he randomly picked back up within the past year or so … who knows why. and he smokes right by the lawnmower — we’re just waiting for the house to burn down..) so he couldn’t hear her calling for him.
thankfully she wasn’t hurt, just more startled than anything, but we can’t risk them being alone anymore.


and that’s what happened to my guy’s dad in the nursing home, actually. he fell and said he doesn’t remember what happened, which means he hit his head … so that’s why he went to the e.r.
but i guess he’s back in the nursing home again and doing better. he’s obviously stable and apparently does a lot of volunteer work there, which could be why he’s hanging on so well.


but it was just thing after thing after thing happening. and then disability on top of it and my doctor not listening to me. my pain medicine is just flat out not working — the new one he gave me that’s supposed to be ‘ohsogreat’
and his go-to medicine is darvocet but of course he can’t give me that now, so he doesn’t know what to give me. he said just to use extra muscle relaxers b/c they will help the pain meds work better. but he only said that b/c i told him the muscle relaxers haven’t been working as well with the change in the weather. they did the same thing last year… so i’m supposed to use the vicodin i have from my other doctor from the procedure and make that last through til the 30th and he’ll think about what he wants to give me then. yeah… cause i have enough to last me a month. no i don’t have to take them every day. i don’t want to become addicted is really the only reason, but i’m not seeing any change in my pain. i took the extra muscle relaxers plus the vicodin and my knees and hips still hurt so badly it was ridiculous.


i just hate never knowing what’s going on…
the only thing that’s good is he took me off my medicine that was making me gain weight. i’ve gained enough and the side effects are wretched! but the say he said it to me … ‘can we stop that medicine?’
ummm, YOU’RE the doctor … shouldn’t you be telling me rather than asking?
and he’s tapering me off my prednisone yet i’m no better so i don’t see his reasoning for it. he’s not replacing it with anything else.


and then this whole benlysta thing… grrr.


and then my mom texts me today about calling my grandma …she doesn’t talk to anyone but my mom. and i do feel bad i don’t call more. she’s sad and lonely and about to lose her house and has a husband who’s there, but not. no one really visits her even though we have family in town. not a huge family, but still…
and of course i don’t go visit, but the thing is, i don’t visit or talk to Anyone. i really don’t. i sit at home and my phone pretty much gets used for doctors to confirm appts and for me to text and use tweetdeck and read manuscripts. oh, and i use my kindle app.


i’m not a happy, thrilling, lively person right now and have nothing positive to say, so what good is me calling going to do? i mean, i’m going to call her, actually, as soon as i’m done with this little vent here, but heck…


and then i look at my to-do list and it’s all stuff i HATE doing. stuff i have to take pain medicine in order to do. i have to do the dishes b/c it was such a shitty week that crap piled up, which is not like me. i tend to wash as i use so that i don’t have to stand in one place for too long. i have to wash sheets. i have to go to wal-mart. and my absolute least favorite thing to do — shower. ย and all of this in the next two hours before my guy gets home. yeah…not gonna happen.


all while my daughter is being a little goob and has been disrespecting me all day long so i don’t trust her being alone while i’m in the shower much but what choice do i have.
oh, and i have to make dinner b/c … well, i’m the girl and once i started doing it, out of the blue a while back, it’s now expected of me and i’m not quite sure when that started. he tells me it’s fine and he’ll come home and cook (like he always used to and had NO problem with), but now he makes me feel guilty the way he says it and if i don’t have food ready then i feel worthless. cause he worked all day and blahblahblah. yeah, well i work too. and it’s not easy b/c i don’t have the focus for it.
and all i want to do right now is nap, but i can’t because i have to freaking make my kid dinner and then shower grrrr


ok, i cannot keep ranting like this or i’ll drive myself nuts. thank God it’s time for a klonopin and a muscle relaxer. oh and a vicodin so i can handle standing.


what a life. fun times…. ๐Ÿ˜›


About Amy Cate

I have lupus. I'm doing my damndest to advocate and spread awareness. This is just one of the ways I'm involved =D
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