daily life (if i’m up to writing…)::
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just my journal updates
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yes, i was MIA in december.
i apologize for that 😦
working some meds out of my body and just trying to get myself … body and life … back in order. or simply get it in order, rather… for the first time in a long time.
but i’m better … not perfect. have to get blood work done tomorrow so we’ll see if the activity has stopped or at least slowed..
i’m off the Megace .. have been for a bit now, but it takes a while to leave your system so it’s been over a month and i’m just now starting to look like myself (my face … it’s not so fat anymore lol). the hormones are still affecting how i feel, that’s for sure! can’t wait ’til it’s all gone.
overall, i gained 35lbs, but i’ve dropped a little bit of the upper weight i didn’t need. now i’m good. anywhere from 116-120 and i’m 5’3″ — i was at 88/9 so that’s a substantial amt of weight and i love it. i always knew 117 was my fave weight … after i had my daughter that’s what i stayed at for about a year (until the divorce … stress made me lose … plus the lupus started becoming active without me knowing it yet..). now i just have to try my butt off (i actually have one now! first time ever :)) to maintain the weight once the Megace leaves for good. so we’ll see.
but life is better and i think productivity and happiness will help. i don’t have as much stress anymore.
the disability people didn’t receive my questionnaire, apparently, but that’s the last part now. they have all of my records plus i’ve seen their doctors, so i just have to make them understand what my life is really like. i have the help of a *disability guru* so i’m following her instructions to the T and we’ll see what happens.
unfortunately, i DO have to appeal my medicaid disability decision (for the state … completely separate from federal), because they didn’t ask ME anything! only went based on work experience and med records.
*my rheumy did say i’m unable to work for at least twelve months*
but … the state claims that since i worked over the summer for a couple months, that i’m ok to work. but since they didn’t ask me or take the time to look at any correlations … they didn’t realize that the work is what drove me into the horrible flare i had.
so my caseworker said it’d be easy to appeal. i just have to get a letter to her and she’ll set up the hearing (just me, her, and a state worker … she said it won’t be bad).
so that’s the work i Really have to do today. finish the questionnaire and write that letter and drop the letter off and fax the other on tuesday (since tomorrow’s a holiday..). i’m just glad i wrote most of my questionnaire on my computer — they do Not give you enough room and besides, my hand wouldn’t work for that long to write it all out!! so i can just fill out the basic stuff, update what’s on the computer, and send it off.
and then play the waiting game … the fun part 😛
i suppose i’m off to do that, then.
oh, i’m signing up for wordpress’ blogging challenge. i’m going to do the blog weekly simply b/c i have three separate blogs b/w the wild within ones and my eden tyler blog — BIG NEWS on that once coming as soon as i finish this and get over there!!!
so i’ll be writing mostly every day (tuesday is my day off b/c it’s my guy’s day off) … 2 days will be here, 2 dedicated to news on the main page, and 2 days on eden’s blog. just have to decide the schedule and i’ll post it on each blog.
all right, i’m gone from here for now. later!! 🙂
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?! 😛
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. 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…. 😛
today, my grandma came over — this time she brought her cleaning lady.
they were Amazing!! they reorganized my entire kitchen, which would have taken me soooo long … i’m beyond appreciative they did that for me. my daughter even helped, which she loves, so that was great.
carol, the ‘cleaning lady,’ cleaned the floors in my living room, cleaned my sofa and a chair, polished and waxed my armoire and kitchen table, and basically was just phenomenal.
my grandma did so much in the kitchen it was ridiculous. i tried to help but she literally told me to get out!! lol
after they left, i felt the need to clean up this back room a bit. pretty stupid idea, but i shoved some boxes down the basement stairs and swept up.
i’m definitely going to ask my guy to help with the rest, but he’s been in bed for hours. poor thing has sinusitis and feels horrible 😦
but when he’s better, he can take the boxes down and i can Finally have this room how i want it. once that’s done, and my books are put away, the house will be set up!! then maybe we can have company!
i probably should go to bed — i think i will after i publish this … i spent Forever trying to find a way to have more than one blog and i figured it out, but it wasn’t easy b/c wp didn’t want to cooperate with me. i wanted it done one way — and was actually finished — when it decided to take my posts from me and make me import them and redo the entire page. grrrr…
oh well, it’s done now.
but tomorrow i get to do the page for articles and posts … turn that into a blog. i already have the page set up, but so don’t have the energy to copy/paste everything right now.
and heck, i didn’t get any of my revising done. i just couldn’t focus. not a clue why. i’m really loving what i’m doing and i’m realizing that this full request might be a good thing — yeah, i’m a idiot and didn’t want to send in yet another one … who does that? who gets upset when someone requests your complete manuscript for a possible contract? people who are fuzzy and confused like me, i suppose.
but now that i’m getting the book how i want it, i think it’s working pretty darn well and i’ll be excited to send it off and see the response.
so why can’t i work on it? *shrugs*
such is life with lupus……
and off to bed i go to scroll through tweetdeck ’til i’m tired enough to pass out. (well, i’m Definitely tired enough, but my brain doesn’t like to do what my body demands.)
So I’m a bit late doing this, but hey … I’m late to everything, so it’s nothing new 😉
I was going to rant about my doctor’s appointment again today, but it would actually be a rant about the fact that is was a Horrible day, and really has nothing to do with him — but the appointment was pretty bad.
Instead, I’m doing this. Then I’m off to write for a friend’s invisible illness site about what I’m grateful for, since Thanksgiving is this week!
*30 Things About My Invisible Illness You May Not Know
1. The illness I live with is:
a few — the main 2 are lupus & fibro
2. I was diagnosed with it in the year:
3. But I had symptoms since:
ah heck, a while before, but i’d say the fatigue started in 2006 — to the point of it *really* affecting my life (and job) … before that i could ignore it
4. The biggest adjustment I’ve had to make is:
my social life
5. Most people assume:
i’m lazy … and i hate it!!
6. The hardest part about mornings are:
simply getting out of bed … my daughter has to bug me for a half hr to an hour — sometimes more. it’s sooooo hard
7. My favorite medical TV show is:
8. A gadget I couldn’t live without is:
9. The hardest part about nights are:
10. Each day I take
22 pills & vitamins (and two liquid medicines, as well). (No comments, please)
11. Regarding alternative treatments I:
don’t use alternative treatments, but my guy is a licensed massage therapist so he works on my hips, legs, and lower back sometimes … along with my neck and shoulders, and it really helps. I was afraid at first because I’d heard it was bad, and it does hurt the first day, but if he does it two days in a row, I actually feel better for quite a while. He hasn’t done that in a bit … need to remind him I’m due 😛
12. If I had to choose between an invisible illness or visible I would choose:
that’s tough. visible illnesses are obviously understood better and people treat you differently, but what kind of visible illness would it be? i’ve grown used to this one and know how to work my life … so I’m not sure.
13. Regarding working and career:
I can’t work much but I try and I adore what I do. And I wouldn’t be doing it if I hadn’t been diagnosed, at least I don’t believe I would — I wouldn’t have had the chance to lose income in the manner I did. I do wish I could do more, that’s for sure.
14. People would be surprised to know:
Hrm… that’s a tough one. Well, for one thing, I didn’t believe I was sick. I just thought I worked too hard and too much. I was shocked when my rheumy said I actually have lupus. I wasn’t one of the ones who knew something was wrong. Guess it comes from hiding depression and other things my whole life. I thought the pain and all was normal and everyone just dealt with it.
15. The hardest thing to accept about my new reality has been:
that I’ll never be able to do active, fun things with my daughter, or take her to the beach … things like that. And the fact that she has to see me sick. I hate that more than anything!
16. Something I never thought I could do with my illness that I did was:
move my house. Twice. I paid for it, but I did it.
17. The commercials about my illness:
I don’t ever see any… That says something.
18. Something I really miss doing since I was diagnosed is:
bowling. I have gone once, but could only play one game and my hands hurt pretty badly after. I used to play three games and just have a blast. I also *really* miss concerts. But I just can’t stand that long. Live music is soooo amazing….
19. It was really hard to have to give up:
shopping excursions, daytime trips, things that would keep me out for hours of fun — girly days, basically. Heck, I couldn’t even go to the zoo with my daughter last month. My grandma took her … how said is that?!
20. A new hobby I have taken up since my diagnosis is:
It’s not new, but I’ve done more with crafts. I’d *like* to take up jewelry making, but don’t have the money to invest to start right now.
21. If I could have one day of feeling normal again I would:
wait for a sunny day and go play in the park with my kid and my man, maybe sit around and read there, go swimming or to a water park, go bowling!, have a great lunch with a good drink (same with dinner), maybe to go a movie … I’m not sure. I’d be up for a lot!!
22. My illness has taught me:
who and what matters in life. without a doubt.
23. Want to know a secret? One thing people say that gets under my skin is:
“But it seems like you’re always sick. I never know when you’re really bad or not.” And that may be true as of the past six or seven months or so, but if I’m willing to go to lunch or I’m joking around and stuff, I’m fine. If I’m hobbling and sitting down or napping half the day, it’s a safe bet I’m not doing so hot.
It makes me feel like I complain all the time, and maybe I do, which I hate even more because I never used to. But when I was sick before, I didn’t know it. Now I know it and so I talk about it. I’m not a complainer but that comment makes me feel like one. I can’t stand it.
24. But I love it when people:
actually take the time to ask me how I’m doing and what they can do to help. I love when people *get it*
25. My favorite motto, scripture, quote that gets me through tough times is:
Wow, I’m kind of a quote fiend… I’ll go with the old standby, “This, too, shall pass.”
26. When someone is diagnosed I’d like to tell them:
their life isn’t over. In fact, a new one is just around the corner. You just have to look for that silver lining and that bit of sun that peeks through the clouds just enough to get you by.
27. Something that has surprised me about living with an illness is:
Honestly — that I *can* get sick. I just thought I’d control the symptoms with the meds. I never thought I’d flare this badly. Especially when my rheumy was always saying my disease was “on the back burner.” Back burner, my arse lol
28. The nicest thing someone did for me when I wasn’t feeling well was:
take care of my daughter and let me sleep and cook for me so I hardly had to move.
29. I’m involved with Invisible Illness Week because:
well, it’s over, but I’m an advocate for invisible illnesses. The knowledge and understanding needs to be spread. Medicines, causes, and cures need to be found!
30. The fact that you read this list makes me feel:
Wow…if anyone really does/did read this, it makes me feel honored that you’d care enough to know how I feel and what I go through. And if you have an invisible illness yourself, I hope it made you feel less alone.
so i was looking through some of my medical records today from when i was first diagnosed, realizing how many more records i need to get (bleh!), when i saw something that *totally* did not vibe with, um, well, reality.
i’ve been filling out my state disability paperwork to get it sent in … taking wayyyy longer than i thought it would — i’m trying to be detailed even though my caseworker said she sees no reason why i’d be denied and should know in probably two months. she told me that people way healthier than me are approved all the time and based on the blue book stuff and everything (which i’m not supposed to know about, or so she says), they really can’t deny me.
(she better not have jinxed me by saying that, now that i think about it…. lol)
but see, now i find that he added something to my chart when we first met that, i suppose could only help me as far as disability, but the thing is — it’s not the freaking truth!!!
there’s this checklist part about what symptoms you have and, even though i was 109 lbs when at the time (and he was just recently only wanting me to be at least 100 lbs…), he checked the gd box for anorexia!
yeah, i’ll admit, i’ve never eaten much, but my whole family is that way. we eat ’til we’re full and that’s it. none of us like to feel full b/c it’s a horrible feeling (and not a one of us is … or was, i should say–til me … underweight or sick…it’s just our metabolism). and even now, eating a ton, i cannot stand the feeling of having eaten too much. (yet i still eat b/c the dang medicine makes me soooo hungry even if i’ve just eaten.)
anyway, so then i look a bit closer and i see he’s left some boxes blank and put Ns by some others. well, the *anorexia* box actually has a Y in it, not a check like the form says to do. but then next to it, there’s also an N — maybe with a line through it, maybe not.
now i’m just confused as hell and i’m really freaking glad i have an appointment for my disability physical on monday because i’m sure as hell gonna ask him wtf it all means.
i’ve never had a problem with my body image until recently, and that’s only because everyone was telling me i looked sick. and when you have an invisible illness, always hearing, ‘but you don’t look sick,’ well – hearing you actually look sick makes something ‘snap to’ in your brain (i was going to say click but it was just too rhyme-y sounding with sick….i think odd things sometimes. anyway…).
and then i realized i did look pretty bad in pictures and when my bones started poking into my skin and hurting me, i *really* realized i needed to gain weight. plus, i was already sick for months because of a flare from going back to work — a v.physically demanding job, at that — i realized that if i got the flu or anything, i could be in some serious trouble.
my rheumy and i had put off me taking this medicine for a couple months, but finally he gave in and so did i. because Nothing else was working. i couldn’t gain weight for the life of me … in fact, i just kept losing even though i was eating.
but the point is — why the FRACK would have have put anorexia down on my chart? it’s been bugging me all freaking day. i’ve had to wait to write about it so i wouldn’t just go off on a crazy rant…
on the upside, he gave me a new medicine for pain b/c mine just weren’t working.
although, he did something else that didn’t make me thrilled. he tried to up my ultram, and i had to remind him that he had just decreased it b/c of a potential interaction with the vyvanse.
um, should the patient have to tell the dr these things?! i’m thinking….no.
so he switched my prescription nsaid to something else, which, from what i’ve read, works wonders. some people who need knee replacements and all says it takes the edge off better than even any of the the heavy narcotics. i just took it about an hour ago and i’ve been typing and my fingers aren’t hurting like they were. my knees don’t seem to be as bad, but that could all be wishful thinking. who knows?
we’ll see after a couple weeks of taking it … since that’s what everything online said — ‘for full efficacy’ blahblah..