embracing chaos

I seemed to have survived the move pretty much intact. yes I am still paying for it in spades (whatever in spades really means), but I didn't have a full blown crash.  crash is way worse than feeling like ass , so I'll take the feeling like ass even though it comes with pain and  super  tiredness;)  so bizarrely enough I am happy that I feel like shit, just not total incomprehensible can't move for several days shit.  who knew I would ever have the need to distinguish between the two?

also on the plus, but way more enjoyable side of life-  ( post moving details )
and I live with my love.  yay life.

saw my results and my TSH level had been running between 2.0-2.6 and now it is 5.03.  almost double in less than 6months.  so definitely hypothyroid (your body produces more TSH to compensate for other things that are low.  hence hypo even though the TSH level is high).

unfortunately it involves a bit of guess and check to get the meds right.  more than i would like but nothing horrible i suppose.  for now i get to keep the foods too.  and she agreed to target T3 first, which is not the traditional approach as most start with T4 but we think it will be easier to narrow down this way first.  can always add T4 targeted drugs in combo or switch if the first T3 med doesn't seem to be doing the job.

yay more autoimmune problems.  i was hoping to advoid further break down but what can you do at this point.  and perhaps since i am lucky enough to have yes something new, but also something new that has a chance of being kept in check, i might just gain a bit of energy back.

Dear Insurance agent,
( but perhaps not done so bitchingly )


infuriatingly yours,
kelly


addendum:  so when I call the insurance company today they say, yeah it is updated.  you shouldn't be having problems.   but I am and last night after calling with the correct numbers I still show as terminated.  so we get to play the fun game problem, call to fix, see no problem, call to say yes still a problem-- hopefully somewhere in there it gets resolved.

Dear Insurance Company,

( cut for language )
me

It's been a very long couple of weeks.  I'm prepping for the final days to finally move in with Mike.  We get out keys on Thursday, the truck Friday and should be done with the unload into the new place early Saturday.  Woohoo- but damn if I didn't love this man I am not sure if I would have been up to all this.

Long story about the move short- even though I have been extra careful to space things out and take it slow (I would normally have started packing this weekend before maybe), man do  i still feel like I have been ransacked.  My body is pissed!!!!!!!!!!!!!!!!!  Not to mention I caught some weird virus that made it 3000x worse for about a week--- and even resulted in me making an extra MD visit, then having to get a mammogram thanks to the ladies being affected adversely (yay virus and not some boob gone amuck for other reasons though), and more blood tests.  Well the mammogram came back fine but apparently my thyroid is off.  Like they want to put me on medicine for hypo, slow, thyroid off.

( more here )

semi-related--- can anyone lend a hand this coming friday around 6pm to load my stuff into the moving truck.  i am in no shape to help with furniture, much less boxes beyond the lightest--- I have one good strong set of hands, just need one more-- people I had thought could help that day fell through.  It should be quick and already have the help I need for the unload across town the next day.  never hurts to ask.

thank goodness for the light at the end of the tunnel- this time next week I'll be with my comfy bed in the new place with my favorite man in the entire world by my side.  that counts for something!!!

but I've been swimming for the past week and a half. granted it is only 10-15mins but I am trying not to incite a full flare up. i know doing new things can really throw me off a lot so i have purposely set limits to how much i can do. figured once my body adjusts i can start adding in more.

all four days at the pool last week I did 5-7 laps (10 to 14 lengths), plus i did the same 2X the week before and today as well (I feel i need to mention it is laps after teaching 1-2hrs of class no less). glad i put limits on it though as I feel ok when leaving, perhaps a bit tired (like today) but it really kicks my ass later. and the outer part of my hips are about impossible to put any pressure on BUT I am getting there.

I can already tell my body is starting to adjust and that even though I am beyond sore and worn out it will be good for me.

i figure it takes a good two weeks for my body to adjust to anything, much less muscle building and use which can cause me to tighten and clench up so much.

i am happy that i am able to keep it from full fledged level flare AND that i am not so entirely pooped and sore i can't get up the next day. not to mention once i get past the evil adjustment stage it will be be mondo good for me in the end.

see, I can be taught. my ability to set reasonable limits is soooo much better than it would have been years ago, much less pre-illness stuff. i still say i didn't need this ongoing major lesson in it though. oh well.

acupuncture, 1 class and i might allow myself to do over 7 laps, but under 10, tomorrow, since it is my shorter day.

for now, going to star and meteor gaze a bit then hit the bed.

fyi- persoids meteor shower is at height tonight but you should still see a high number of shooting stars the next couple nights as well.

or at least greatly diminishes your ability to deal with anything well.

so last night was mentally and emotionally killer, still kind of stuck in it ---- mostly for unexplainable reasons that the most i can contribute them to is complete physical exhaustion and mental/emotional faculties being worn to the core as a result.

but thankfully i have a wonderful and loving man in my life  for support and also have my other love, all things olympic, for some positive distraction.

i actually swum 5-7 laps in the pool yesterday. the colder water pool no less.  lest you mock the short effort it is definitely a victory.

i've been doing water aerobics for what seems like forever now, esp since i teach, but have not swum in years.  and i didn't want to start and do it in wrong form as all i need is  for all my work getting the body better to be undone by wrong form.  so one of my friends is also swim (& swim team) instructor and she helped me out for about 20 mins kind of combing all tips for free-style.... and it has been up to me to practice.  she's offered to teach me some different strokes once i get this down a little better, so i have variety and don't get bored.

as for the practice, well this past week was pretty full and as much time as I was at the pool I didn't really have any extra time PLUS I feel really awkward practicing really bad swimming in front of or sharing class space with people who are normally in my classes.  not so confident with it yet.  after spending a little alone time in the pool i feel better about swimming in front of people though.

so thursday after subbing for the evening class, where it is generally pretty quiet afterward, i took advantage of the nearly empty pool area.  and did several laps, at least five when I started counting which includes going one way and back.

now this may only have been 600 feet, but man it is tiring.  especially since while my form isn't bad, esp for someone who hasn't swam for real as opposed to playing around in many many years.  BUT i am still getting comfortable with the breathing.  i seem to be able to get a good breath on the one side, do my 2 strokes in between and then go to turn my head up to the other side and that is when it doesn't go so well.

and despite the fact that I have taught (and usually do while teaching) up to four classes in a big day, swimming can definitely still take it out of me.  i know this happens anytime you do something new or you haven't done in a while since your muscles aren't used to it--- throw in muscles that get more easily fatigued and sore --- and man 5 laps can feel like a huge workout.  admittedly i stopped each time i reached a wall- and at least a couple times i stopped mid pool as well to catch my breath.

my goal in the next couple weeks is to try to do between 5-10 laps at least twice a week.  when i can do this easily i will do more and allot more time to it and go for more laps.  figured especially since i am teaching so many classes and trying to add in more side jobs I should not jump in and overdo it. 

i am also trying to add in the yoga class i can actually do (yay) more frequently.  my thought is that since i have the option of swimming or heading to class i can make it fit my schedule better.  if i feel like coming back during times i don't have to work then i can do yoga.  if i know that i am not going to make it back then i will try to do some laps.

for the next couple weeks I pushed my M and TH physical therapy back a half hour so I definitely have time.  we'll see how that goes since both are days i have 2 classes back to back, then PT-- now adding in 15-20 mins swimming to a day already full of activities.  the thursday i am keeping open is also because my friend is around at that time for the next month.

so we'll see.  like i said i don't want to overdo it but i also know that my classes aren't really workouts for me as much any more since I am used to them and also since I teach so I can't really get to breathless that much.  plus that water is toasty.  so for now looking to add 2-3 things a week max, and only have it be three if it 2 are shorter times- say 1 yoga, and 2 times swimming 15-20mins.  figured if i get to two things it is a victory and if 3 it is a bonus. 

plus I get to go get my own swimming goggles and swimming cap--- aquatics class may mean i get fully wet but i never stay under and my hair has got enough issues with my body chemistry changing all the time.  yay swimming cap- hopefully i can find a fun one that is latex free.

 and I wish taking off all my clothes would help.

seems that a fun side effect of the new part of treatment is i am now officially Ms. Feverish.    At first I was mildly feverish in the morning and the rest of the day not such a big deal.  Now though anytime I get remotely warm my entire body skin wise stays this new fun shade of hot.  And no matter what I do to cool down, I don't.  lovely.

for example-

last night was hanging out with the boy for his birthday.  granted the restaurant was a wee bit warm but it wasn't bad.  then went and hung out his place with his roommates for a bit.  again mildly warm but still under the uncomfortable range--- for normal people that are not myself. 

so yeah I could understand my skin feeling warm during this and me being Kelliots of Fire, but damn it took me over 4-5 hours including a drive home with a nice low 70 degree weather which felt awesome and cool but still did not calm down the body, and then copious time in a/c and using some ice and cold cloths  and laying in front of a fan to cool down enough so I could lay in bed.  and then when I finally cooled down enough to get to sleep I wake up with my morning low level feverish sequence.  so my skin is none to happy, even now.  grrrr...  

I don't know how to describe it as being far different than the normal being hot but it really is.  up until 2 years ago i would get hot and get nauseated thanks to all the meds messing with my symptoms.  it would get above 80/85 degrees and i was in hell and trult couldn't function, much less move really.  

then 2 years ago when i went off most stuff gradually and starting getting things under control a bit this issue went way down as a problem.  i was ecstatic.  but now, it's fun new things, like my internal temperature seems to be just a bit higher or something.  and the bad part is I rarely sweat along with it, unless I am in a room/place that would make anyone normally sweat.  so i have this all this collected heat and no effective cooling mechanisms.  wonder how long this one will last?  

 is this what menapause is going to be like, because if it is I think i have now earned the right to skip that phase thank you very much.

too bad i couldn't schedule my monthly (rather every 3weeks) acupuncture until late anyway as my doc is on vacay--- so i am in like a 5 or 6 week lull instead of the normal 3 inbetween.  i think the blood flow and her targeting the kidneys and/or liver to help me process this shit out would be ever so helpful.

i guess on a positive spin note, yet another sign that this process is working.  although note to body and world and this de-merc treatment, if you could speed it up by at least getting symptoms then getting past them sooner I would be ever so thankful.  this long term stuff with all things overlapping that really hadn't before is not so much fun.  

but a special thanks to my body though as i think i have had just a wee bit more energy the last couple weeks than I have had in a while.  still I am way more exhausted than I should be, but at least getting through the day better than before and definitely getting some sleep instead of none.  i'm hoping i stay well beyond that too tired to function well enough to sleep stage - in fact if that never, or at least rarely, came back I would be quite content.

for now I am just the less tired  yet still exhausted heat emitting girl-- i wonder if i could do one of those party tricks/home science experiments like frying an egg on the sidewalk.  although technically half the time i feel hot as hell the outside of my skin doesn't necessarily feel that way.  i may have to test the egg thing though once the heat is in its prime.  i mean i have to stay amused somehow right  and if it turns out I am better than a microwave might as well harnass that new power ;) 

more water please?

originally put this in the firbo community but wanted it here as well for friend, or kind insightful passerby ;), input-
So I figured you all might be the best to ask about this thanks to all the personal experience wealth here in the community.

I am hoping to move in with The Boy in a couple months (yay ;)   That's the awesome news.

The bad part is I can't seem to make enough income to even do close to half.   Or even really help with rent at all. 

without going into too much detail, I basically discussed with him what I could do is a) make sure we find a place he could possibly afford on his own 'just in case' and b) i can probably realistically most grocery costs and shopping (especially helpful since i have special things i can eat and super load on veggies/fruit)  c) if i have any money to spare maybe i can help with utilities  d) i could have times when i can do none of 'my part' around the house or even with groceries et al.

 We've discussed this and other aspects and he is AWESOME-  saying that is what a relationship is all about. 

and I agree BUT------

 it definitely brings back the 'burden' issues that come with not only having to deal with chronic illness myself but including others to deal with it day in day out. 24/7.  at least i know I have to let that go and deal with it.  (not to mention I met him after illness onset so it wasn't like we were already living together and then BAM it happened and we just had to deal with it- which i know brings it own set of difficulties some times). 

and I think i'll be able to let it go and deal with the situation as is but I am one who has to kind of explore it fully and really look into the pros/cons/options first.  once I do the active process I can usually make peace with it.

a further complication is that i still will need some help from the parentals with medical costs- fortunately he and the parents get along famously so it makes it easier.

i know if i waited until i could technically afford it all on my own i'd probably die of old age.  and i also know that people may truly have the best intentions but money, and often being in the roll more often as caretaker, and the like can sometimes make the most awesome people harbor silent resentments over time even if they don't want to feel that way and do everything possible not to let it happen.

I have some ideas and have also had several conversations with the boy that I am not going to relate in detail as I kind of want that fresh pair of eyes approach with people literally writing things that they tried that have helped/made it worse.
 
I was wondering what is it that some of you do in similar situations? 

What are some of the things you might contribute since you may not be able to as much to give as you would like financially or other ways? 

What are some of the things you have talked about, or wished you had known to talk about, when trying to combine lives with someone you absolutely love and deal with the frustrating realities of limitations like being in the financial crapper?



tons of gratitude for your thoughts!

and here I thought I might actually put some of it into savings.  ha!

unfortunately it went toward medical expenses -for just the month.  and nope, I didn't do anything other than the normal routine.  ridiculous.

and it doesn't even cover my monthly insurance costs. 

here's hoping that in a few months current treatment cost will reverse sky rocket back to reasonable.  PLEASE.

grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr
hmph


dear medically needy self, please find a less expensive modus operandi. 

sincerely,
the whole brokeass self

so my hips, the outer parts that require being laid on to be on ones side, are being beyond feisty again.   they normally are tight and sore but not to the level where i am like princess and the pea about anything that comes near.  it makes it impossible to sleep if you can't lay on one side or the other for more than a couple minutes.  if i am not ready to fall off quickly it is best not to even get into bed.   so i am even more tired although i don't know if half the reason i can't sleep is because i can't find a position to relax enough into for sleep-  grrrrrr!!!!!!!!!!!!  and now i am left wondering which came first, the hips gone wild or the insomnia.

if only I were bionic....

it amazes me of how some people in your life can know you and what you're going through fairly well AND still have no idea.

Take my Dad last night.  First I need to reiterate that my parents have been particularly wonderful in helping me out these past couple years.
anyway.   I was home last night for the first night in many since i have been house/animal sitting.  and I was nothing short of supreme exhaustion and was trying to keep myself awake for a normalish bedtime so I had a chance of actually sleeping, much less through the night.

Dad asked how i was.   I told him super exhausted.  And he just laughed out the words how can house sitting be exhausting.  umm I could tell you probably hundreds of ways.  but at the moment I just said, the animals. 

I can understand though as house sitting sounds like it is this minimally invasive job.  In many respects it is even BUT it is also a huge commitment.  Especially for someone prone to getting worn out easy and not so good with big changes in schedule.  And this last place, where I have been long term before, the animals are a bit overwhelming with one dog (it was 2 until this spring) and 5 cats, one of which I am convinced actively stalks my every move.

first and foremost, not having one place to call home and stay 50-75% of the time at least is tiring.  yeah I have one place for like a week or two at a time but....  not to mention I am a horrible sleeper in my everyday life and it gets far worse in strange places (even if I have been there before still sleep is harder to attain, and i sleep even lighter).

Dealing with these animals and their needs for any person could be a bit tiring.  Then you add in the changes I need to make to my every day to do it, not to mention in this particular case with so many animals its a super plus version.

During it all I still have my normal obligations which have me running around a fair bit- pool, PT, doctor appts, etc....  Not to mention I still try to see Mike and tend to have family events to go to.

And stalker cat, not allowed in the bedroom ever, even by the owners, likes to play with the door handle to try to get my attention about 4 hours before I need to nor should get up.  grrr....

and yes, I took on these jobs and this life so it would be easier on me than a traditional job.  in many ways it is, plus it gives me the flexibility to keep and add in appts as needed.  which is absolutely crucial.  at the same time a P/T job where I went to the same place 3-4 times a week, stayed there and came home would technically be a bit easier- but it's not feasible since I still would have to AT LEAST take classes 3-5 times a week in the water and hit PT and the MD in addition. 

I would have different jobs, maybe with keeping house sitting at the one place only as it is far more relaxing and they have a good kitchen, if I could.  but right now I really can't and I do need the money.  and despite it pushing me over to extreme exhaustion way more often it is something I can at least do.  and while dad is one to tell me a lot not to over do it with other things, I still don't think he can get this.  and I'm too tired, and too tired of having to explain, that I am too tired.  it gets old for me too.

Pimping  olympicoasis

My awesome SIL  rissykay99 and I have started an LJ community so we can post frequently about the Olympics and our love of everything Olympic. 

Love the Olympics? Love Summer sports? Wonder why people love the Olympics? Check out the LJ! Pass it on to anyone you know who might be interested.

We'll be posting weekly leading up to the Olympics and daily once the games begin.

(totally cut and pasted from the SIL, I'll admit) 

And our first posts are up!!!!!!

If i ever veer so much off the restricted diet, taking things almost daily i know I a) shouldn't eat at all or b) should only eat in limited quantities then I want you all to slap me across the face or hit me very very hard.   even if I tell you, that;s ok, i feel pretty awful anyway so this won't make much of a difference.   whatever i say, I am completely full of it.  there is no good reason.  so go ahead, hit me with your best shot.

yes i know this drastic action will hurt and yes i know it can aggravate many of my symptoms but i think in the end it will be better than the revenge of the foods that no longer like me at all.  yes, they are back with a vengeance it seems.  doubly pissed off at me for not tolerating them and also for being left in the dark so long.  grrrrr..... why do i do stupid things.

ever ever ever have been so happy to be back on a treatment.


it's been a tough couple weeks with me giving my kidneys and liver a break from the assault of de-merc treatment.  in that meantime  I seemed to have stirred up all the mercury that had ever so nicely latently settled in my tissues to the point of active.  and man did the mercury cause a ruckus.  a couple days back on treatment and things really started to go somehow back to normal.  or as normal as I can be ever, much less on this treatment.  maybe come fall I can dare to dream that I will feel much better and not smell like super sulfur any time in the near future.  just maybe!

but sanity, no more high level of emotional distress (or rather being so tired and sore my emotions were out of control), and far less pain is something I am willing to deal with.... forward treatment on!

from slartibart in the LJ fibro community





i can't get it to embed but try the link

I did not like you at all the first time around. 

It is highly unnecessary that you came back, much less in full. 

Please please please leave now and do not come back. 

I will forward your things left in the camp you so unkindly set up in my ass, spine, pelvis and lower back.

I mean it.  Go!  You are not welcome here.

-Kelly

despite feeling the worst I have in probably a year or two, I feel ok.  well at least now, last night was something else entirely but thankfully made it past that with the help of someone I love.

I looked and didn't see this article posted here yet, if it is a duplicate and I missed it, apologies.

The Autoimmune Epidemic: Bodies Gone Haywire in a World out of Balance
http://www.alternet.org/healthwellness/80129/?comments=view&cID=860672&pID=860651#c860672


By Donna Jackson Nakazawa, Touchstone/Simon & Schuster. Posted March 19, 2008.

Scientists worldwide puzzle over an alarming and unexplained rise in the rates of autoimmune disease. Yet the media remain mute on this crisis.

Excerpted from The Autoimmune Epidemic: Bodies Gone Haywire in a World Out of Balance--and the Cutting-Edge Science that Promises Hope (Touchstone/Simon & Schuster).   Reprinted with permission. An interview with the author follows.

(sorry for some reason it isn't letting me insert a link, so you'll have to cut and paste
http://www.alternet.org/healthwellness/80129/?page=entire  )