Dear Smoker, Please don't kill me

I am taking on a controversy here.  Some of you may smoke and some smokers are very upset by people saying what I'm about to say.  Yet this happens all the time now, and while I realize I have an extreme situation and that it's not truly the smoker's fault, smoke bothers many people to a lesser extent and therefore for people like me as well as most non-smoker's, at least please think about this.

The following is a letter, edited for privacy only, my dr. wrote to help me handle a situation in which an exposure to incense caused me to have a bad attack and the people who handled it were not very supportive with an attitude of "one person shouldn't get to change everything".  The person who witnessed the asthma attack was the only one who got it and I scared that person as the attack was bad.

Dear Jennifer,This letter is to confirm that I have diagnosed you with Chemical Sensitivites and Asthma, which may result in potentially life-threatening bronchospasm when exposed to chemicals such as cleaners, air freshners, incense, tobacco smoke, and strong perfumes. While you are able to take steps to avoid these, it is impossible to control those around you. Please take precautions, including having a working inhaler with you, and continue to immediately leave situations where exposure is occuring.  Dr. Body

It took a while to process that.  I'm well aware I have severe asthma, and the last few days would have confirmed that if I didn't know it; ever since my ER visit I've reacted to everything.  But the phrase "life-threatening" had not occurred to me.  You'd better believe an inhaler is on my person at all times pretty much (not when sleeping) all the time now.  Which is good since I seem to need a puff every few hours.  I knew it was bad; I did not comprehend completely until this HOW bad.  Which is good because it was another push toward letting Dr. Body send me to Dr. Everything Allergy and Asthma (Dr. EAA).  


Today I wsa on a ferry boat.  It was marked no smoking everywhere and the instructions clearly state this includes in your car.  I was in my car with the sunroof open and windows down, reading, when I smelled ciagrette smoke.  I rapidly sealed my car and searched.  A man a few cars back (and I think a woman with him) were half in and half out of the car smoking.  When i walked past to be sure they had left the cigarettes out in plain sight.  I tried hard to find a ferry worker to tell them, and nobody was accessible.  So I just put up with it.


The thing is that cigarretes are the hardest thing to avoid of anything because smokers tend to gather in doorways.  I am severely allergic to that smoke but if I want to do something as simple as buy food I generally have to hold my breath the best I can, use an inhaler, and hope for the best.  Life feels like a minefield right now.  Sometimes I know something will make me react.  Sometimes I am surprised.  Regardless it's a scary world and it is smokers who tend to have the least courtesy and cause the greatest trouble (smoke happens to be my worst trigger I think, be it cigarette, wood burner, etc.)  It makes me wonder if smokers realize exactly what risk some people are at from their behaviors.  And I suspect no. So, here's the word of experience:  I recognize adults have the right to smoke.  I also recognize my own right to breathe.  So, please, please don't risk my life by smoking where I cannot avoid you or by sneaking a smoke where it is prohibited.  If you smoke in a nonsmoking hotel room I can no longer stay there.  If you smoke too close to my car, even if I manage to seal everything that smoke can bother me for an hour.  If you smoke directly in front of me while talking to me I will tend to run away.  


There are other areas that are the same.  I haven't been to a mall in months, partly because of fear of perfume counters, and partly because I hate malls.  I can't go into cleaning or laundry product aisles and thank God for those stores that seperate the kinds I can use although mainly I have to use soap nuts and vinegar and baking soda.  


I don't want to control you, or anyone else who may cause an attack.  I HATE with a passion asking pt's to not smoke in front of me.  But, you could kill me.  Did you know that?  I didn't.  And until mowed grass put me in the emergency room I had trouble believing it.  Now, I believe....

should be slowing down

Today was the beginning of vacation.  I have now has my allergy test labs done, (as well as a titer to make sure I'm immune to chicken pox; I had an extremely mild case as an infant and that may not have be enough and with my crazy immune system knowing I have an issue is better than not),  had this new type of pedicure that uses UV light to dry the stuff so there is no smell which means no asthma attacks; problem is that I didn't get everything I paid for and am waiting to hear back about that.  But it was ok because I didn't have time anyway.  Then I did all those stupid packing related things to be ready to leave, including stalking my cat, and got in about 5 hours of driving, with a break to drop off the cats and a few rest stops.  I really wanted to finish driving through Virginia but it was getting dark and rainy and I'm in the mountains so I figured since I also needed gas and was getting cold I might as well call it quits.  One benefit of asthma:  I get to justify to myself staying at nicer hotels than my thrifty self would usually choose because the cleaner the better, so I'm in a lovely place tonight, and actually for a good price.  I did two good things:  one was that I let myself sleep in a bit today.  The other is that I let myself leave an uncleaned house.  I am starting to feel more able to do that now, but not the major work that would be needed to recover for these last months.  Regardless, it s HUGE that today I felt well enough to want to do that.

(Written Saturday AM:  Even better is that I feel ok waking up today.  Still sleep of course and would love to sleep 45 more minutes but my body and mind are at war with getting PM meds out of my system and AM  meds in.  And I'm excited which makes me more wide awake.  Oh well.)

Overall I'm doing a little better.  Using the nebulizer is very helpful and I now have a fancy pants model that can be used in the car. It's pretty neat.  I also can take allergy meds now because I've had my test.  So that's good.  Dr. Body agreed that until allergy season is over anything can happen.I hope we're both wrong.

More from the ocean, after only another 8 hours of travel.......:)

What I hate the most about my abusive past

It is not one of the things you're going to think it is.  It's not the hard work, it's not the horrifying things like I broke my ankle and ran 5 miles on it 2 days later and continued to do so until I destroyed my knee and my other foot as well.  It's not the bad memories and the terror of things I may or may not understand why I am afraid of.  It's not the sudden discoveries that knock me down over and over.  It's not looking at my life and how so much of the bad things in my life are related to abuse.  It's not even the things I've lost, relationships, children, probably marriage, etc.

So what is it?  Well, turns out the most painful part of my past is hearing people say (and this is surprisingly often) out of the blue "I just don't know how anyone could hurt a child.  Especially a baby".  And I want to always say I know exactly how, and you don't want to know what I know.  It can get worse, because sometimes they proceed to talk about how they think the child in question will turn out, etc.  And I have to just smile and play along, because one of the reasons abuse is so bad, so prevalent, is that people naturally protect themselves by believing it happens away from them.  I never know what to think or feel in these discussions.  And today I realized I truly hate them more than anything else, and it's worse because they are innocent of wrongdoing aside from not mindreading.

I will say I'm glad it is small enough now I can feel that way.

Had to happen sometime

I am well aware that I have been amazingly blessed to have had severe asthma/chemical sensitivities for so long and to have avoided the ER.  I've had much anxiety over that.  Today it happened.

I just lost the whole story of how it happened but the short version is that they were mowing the median, I made some retrospectively dumb decisions about which hospital was closer than not thinking of having my mom get me to the hospital, and I learned a very valuable lesson.  My cat lost my medical alert tag.  I got a new one which is not filled out yet.  So that meant I needed to be able to talk.  Which I couldn't because it was hard to breathe.  By the time they saw me I had been in the A/C for a while and away from the allergen and that calmed things down.  nothing really made a lot of sense; the triage nurse sent me back for immediate nebulisers and nobody actually did that for about 2 hours.  They forced a strep test on me.  I have no idea why.  I have asthma, I couldn't breathe, I was wheezing, treat the asthma and don't gag me.  The scary part is that I couldn't be forceful about the MAOI.  I choked a refusal to steroids and why and did not have them.  But I was given a nebuliser that I'm pretty sure I can't have.  I had checked my BP in the car since I was using a new inhaler and all inhalers pretty much are interactive with my MAOI but in a have to do this way.  But some are better than others.  I was so grateful to finally get the thing that I didn't think to ask.  THAT is how scary and exhausting this was.  I ALWAYS ask and refuse to take things until clarified.  The dr. then came in and asked how my peak flow (measure of how you breathe) was; I said it wasn't checked.  She said I needed one more nebulizer.  That was not given. During the neb. I asked for my BP to be checked because of concern for MAOI/increased BP.  They did not do this.  Instead all of a sudden they were rushing to send me home since they needed my room.  A paramedic literally came into the room and gave me my purse and pushed for me to leave.  I still had a heplock that had worked it's way partly out in my arm and was wearing scrub pants, a gown and nothing else.  I suggested altering these things and the nurse looked the heplock and told me it was going to hurt coming out (having no clue how much scar tissue I have from blood draws; nothing hurts), but also not applying pressure.  I got dressed with her in the room (awkward but I felt pressured to get out) noted my dressing was soaked with blood and rather than treat that she just put a new dressing on, so I'll have a huge bruise tomorrow I'm sure.

It's not until now I realize how rotten this all was.  I was grateful to not have to have steroids and not have to fight that.  But nobody listened or paid attention to this scary med I'm on or the monitoring I need.  And I was unable to communicate.  So I asked Dr. Brain to write a letter to help clarify things and I'm writing one as well so that next time I can hand it to them and have bullet points with I am on an MAOI, BP must be monitored during all breathing tx, steroids can be given with permission of Dr. Brain but I then want to go to the hospital where I'll be admitted if needed.

I also learned that while my new Dr. Everything about Breathing (Dr. EAB) has had lots of information and training in managing Jen from Dr. Body, his nurse practioner has not and so I will have to talk to the doctor about making sure his staff understand that if I am concerned about my blood pressure elevating, even if they think it is no big deal it IS, and that my treatment will look different than other people's.  She wound up taking me off another med, one I may put myself right back on as it is helpful and the doctor didn't take me off it last week even it "he hates that med" and we discussed my use of it.  Again, it's a situation of he may not like it but it is safe for me so it's a compromise.  She got pretty mad at me because I can't do nebulizers 4x/day.  I think she thinks it's stupid I haven't been on them (again, there was a reason), and I honestly told her I can only do them twice daily because I'm away from home so long and I can't do one when I get home and hten before bed as that is the same time.  There are battery powered nebs and I'll ask about one of those, but first we'll see what my blood pressure thinks.

I left the hospital and saw 3 easy patients.  I did not need to have my schedule for today collapse into nothingness with only 2 days to go, but at least the people who most needed seen were, and while I'm still trying to calm down about the entire episode at least I survived the first time that happened.  I did have to cancel Dr. Mind and that terrifies me as I do not tend to manage 2 weeks without him well and it will be more like 18 days between visits.  But I'll also be on vacation and hopefully managing well and after the last months being so intense getting to take a break isn't the end of the world.

What is scary is that my breathing is still not great.  I want it to feel like it did 2 days ago instead of tight and sore.  But again, no steroids.  I could be breathing great on the psych unit.......

Now to fill out that medic alert......stupid cat.

A week? really?

Well, that was fun. Half a post just disappeared.

What I was saying was that I can't believe I went that long without posting and that posting is likely to be scarce for a little bit longer as I'm going on a full family vacation and have no clue how much privacy I'll have.  And I am so behind getting ready it's not even mentionable.

Last week's "plan to be here 2.5 hours" allergist appointment was 4 hours long.  Not waiting, 4 hours of tests, questions, xrays, assessments and a long talk with the dr. about different possibilities.  I still have to have blood drawn for allergy testing as one of my psych meds negates skin testing.  He had lots of god ideas and seems willing to find out precisely what is going on.  He also made a huge point of telling me how great Dr. Body is, that he truly cares about me and that he went to extremes with both a phone call and and aletter, plus detailed and extensive records from the last 8 months.  It sounds like Dr. Body made good nad sure that I'd be treated kindly and with understanding before he sent me there.  After other experiences that was so kind of him.  He took me off the med I hated most and I'm trialing 3 others. Right now I'm still trialing the one I was on before at a lower dose.  So far no difference from being on symbicort except that my raspy voice is much better and I think I have a better appetite and maybe sleep, although tonight isn't so good.  I got wound up tonight somehow.

My biggest news is that my mixed episode is finally well and truly, for all intents and purposes, over.  I still am just a little sensitive to noises and a little emotional but nothing big or even that unusual for me.

And now I am falling asleep and can't type.  I'll try to write again tomorrow.  I should have time in the morning.  I hope.

Miss you all.  Hopefully work will calm down.  the big thing last week was I got scheduled for day that was impossible and thought my supervisor had approved it when it wasn't her writing at all.  Duh.

A year

And what a year it has been.......

One year ago I walked into this new job placement I was so unsure of.  I hated home health so much before.  The first few hours didn't make me feel better.  Somehow they didn't know I was coming and so I was a surprise that nobody knew what to do with.  Eventually we got it sorted out and what would become my new life began.
Although the mess that made me leave my last placement was painful this was the best thing that could ever have happened to me.  A job where I am happy, supported, appreciated, and love nearly every minute is more than I ever though to ask for.

Even though it's been very hard in many ways (the first few months I was fearing the arrival of my niece; the next few months I was doing well, then I got sick and we all know the story from there), it's been a great year and one I'm so glad to repeat.

She's BAACK........

More than one meaning there.

Meaning one:  Brenda the ovarian cyst has decided it's time she speak up and tell us how little she likes being confined to a tiny little ovary and so she thinks she'll take a tiny ice pick and try to ease her way out.  I don't like Brenda.

Meaning 2:  I'm feeling better.  That is huge.  My asthma/allergies are taking a turn for the worse but my mood is continuing to stabilize by the day.  Friday I had a very, very bad day but by today was ok with it all.  I did the right thing and unfortunately their was some conflict.  But I had no choice.

Meaning 3:  I am apparently still capable of huge errors.  I don't know if I wrote about paying Discover $500 but entering $5000.  Not surprisingly they didn't want to give that up despite the fact that I did not have $5000 in my account.  So today I went to pay for something and overpaid by $550.  Thankfully that was immediately refunded.  Yet I did not panic and that is huge, another sign I'm getting better.  Dr.Brain is wondering if one of my astma meds makes my bipolar meds work a little too well in the sedation area while not giving me the full benefit of the actual med.

Meaning 4:  I'm being thankful tonight.  I am curled up with one cat with the other inches away and after filling out asthma paperwork for the allergist later this week I realized how fortunate that I"m not reacting to them.  There is just no way that I am giving either of them up or changing our routines, no matter what the allergist says.  There are few changes I won't make but that one is non-negotiable.

Falling asleep, better send....

I just moved a pint of worms

This post is written to avoid the real reason I'm tired and upset and can't sleep.  Maybe tomorrow we'll go there.  (ETA:written Friday.  Posted today.  Keep falling asleep).

There's something you don't say every day.....I finally realized why my worms are so important to me.  Being sick and exhausted for so incredibly long has cost me most hobbies I enjoy.  I don't have energy for much of anything.The worms, on the other hand, don't take a lot.  Some food once a week, occasionally soaking newspaper and cardboard and adding bedding and moving worms in dangerous places (the water collection tank, the lid) to safer locales.

Anyway, I'm working on preparing to harvest the top bin.  I'm doing this a bit differently than directions I"ve read; i'm putting the new stuff in the middle tray because I want empty both the top and bottom ones soon and and for complicated reasons the middle made the most sense.  They are happily settling in there and there were so many on the remains of last week's feeding I couldn't even guess.  I'm pretty sure I overfed tonight and will pay for that with bugs, but that's another hope for the middle tray; less chances for bugs.

I've been tryin to lure the remainging worms in the top to one corner so I can move them to the middle tray.  Thus far that isn't working overly well.  So I started sifting through and removing as many as possible.  For whatever reason the top tray is nearly all babies (I assume the adults headed south and then the eggs hatched) and they are hard to pick up b/c they start about __ long and not much wider.  I now proudly have learned how to pick them up safely.  So I sifted through the compost and moved as many worms and the clump of dirt/bedding they were handing onto if relevant into a jar then into the lower bin.  I think I spent an hour of my life on worm maintenance today.  But I know what is going on in each level, I know the big worms are on the bottom for some reason, I cleaned out the drain and am able to drain off liquid fertilizer again, and  I know I have  happy, healthy worms and a lot of compost as well.  Yay.  I may only have one hobby, and it may be limited, but it is something at least.

Progress

Dr. Mind is going to be away for a few days so I saw him tonight.  Generally if he's going to be gone or I am we keep it lighter.  We did today, with my explaining more than I apparently had before about the absolutely horrible therapists I had in grad school (remind me and I'll tell you about them). Somewhere in there I drifted off on a manic tangent. He actually aimed me that way, I did not do it myself.  I think that I have been more conscious of the changes in my speech patterns this time than before, and especially of my inability to recover when I wander then can't regain the topic.  Very sneakily he let me go off on some crazy tangent then asked what  we had been talking about.  It took thinking and a couple tries to get it together but I remembered and got back there.  He of course knew all along but hid this.  The fact he knew really is a good sign as when it's really bad I go down so many paths at once it's impossible to sort out or follow at all.  So I'm getting better.  I  knew it, but that was huge evidence of real progress which is a very big deal. It's been months since I've had the ability to figure out where my own thoughts have gone and although it seems small it is really huge that I can do this because it means things are improving.

And now I need to sleep as tomorrow is a very busy day as is every day this week.  urgh.

Wormie, wormie Wednesday (2 days late)

(Avoid this one if worms gross you out.)

So a week ago I killed off nearly all of my adult worms but noticed a plethora of babies.  Some mature worms are back, either matured juveniles or ones I couldn't find last week (it's easy for them to hide).

I also realized last week that I had a tray of compost ready to harvest and another almost ready.  (The worms live in a stack of trays with mesh bottoms. I've had 2 trays until now.  They move between the bins and you're supposed to keep the food in the top bin unless you read different people's opinions in which often the bottom is recommended.  Frankly I did not like using the top bin to feed because even when covered the food was too close to the surface and it resulted in fruit flies.  Not many, but one is too many.  At the moment because I did not want the babies to have to try to crawl up what is a huge distance to them yet a tiny distance to grown worms, plus I really, really don't want to have fruit flies, but the bottom bin is also dangerous for the babies as they can fall through into the death pit (where the water drains).  I also thought the middle was logical since both bins are about ready to harvest and that made a short journey.

I put this all together over the weekend.  Tonight I checked it out.  Not only do I have some adults, my original 1000 worms are probably closer to 2500-3000 now.  I have a LOT of babies.  And they are growing and doing what they should and heading for the new food.  For some reason the babies tend to exist in these tangles and  there were about 100 of them all clumped up on the new food, as well as hundreds more on the remaining food upstairs and throughout the compost.  I rescued a few from the roof (they're really fine there unless I knock them off accidentally and squish them) and I found the tiniest one I've seen yet, barely even visible and looked tiny on my fingernail.

After I get paid and can afford to buy food (sort of what with gas prices it's about all i buy) I will put some melon in the top tray which will attract more babies and then they will move down a bin with my help and hopefully in a couple weeks I'll feel that tray is pretty empty and ready to have a final search party before being put aside for compost.

The thing is working.  And I don't care what kind of ridiculous brain activity makes this the one "hobby" I can enjoy right now, it's fun.

Oh, yeah, THIS is of substance

It would help if i felt like linking back, but some of you may remember me asking you signatures on a petition to free a Pakistani woman who had been imprisoned very unfairly and sentenced to death.  I learned today that she has been freed and is in hiding.  I would assume she'll be heavily seeking asylum as I cannot imagine her life to be long in Pakistan,  hiding or not.  The political mess there must be really fired up right now and she's an excellent scapegoat of what happens when the west interferes.

(As an aside, I understand that when the SEALs went into Bin Laden's home it was knowing that there would likely be death.Even the use of a woman, one of his wives, as a shield is pretty predictable. And while I'm sure they tried to not kill her, in a way the loss of one innocent life in what had to have been a very nervous, agitated, fearful bunch of people, is rather amazing that it was only one.   I can imagine that it was vast confusion in that house and a lot of bullets flying could have killed any number of people.  But I can't stop wondering if you have to shoot at someone is it easier to shoot at someone dressed in a berka versus someone you can see?  Because i don't have tv and didn't feel like checking the news today I didn't find out about all of this until a patient told me.  One of my immediate reactions was to say that I hope that it was not the show-and-tell of Saddam Hussein's death.  That was a reason among many I gave up TV; those images were haunting, upsetting and I could not avoid them.  It seems we have avoided that, but again, how much did the woman in the berka count versus a man with a visible face?  don't know why i can't stop thinking of this, but it is not a happy thought.)

On the positive, the woman is freed and if i feel better and remember I'll link back.

Title? Inspiration? Vicodin......

Vicodin is eating my brain.

I know the best way to get rid of blog readers to to whine about how you hurt every day.  So I'm not doing that.  But I do want to tell you that I am not posting because I am still having a lot of pain and that since this is the pain that means the cyst drained fluid into my abdomen, a place that prefers to be free of loose blood or whatever the heck is in the cyst, so I'm in for a few more days of hurting until it's absorbed.  Which means probably not a lot of interesting blog posting as my "do what it takes to work, get notes done, eat daily, drink water, take meds, get 5 hours of sleep, see therapists, otherwise forget about it' approach to survival right now does not allow for vicodin ingestion, need to lay in one specific position or else be moving in a specific posture.  This does not fit into what I have been trying to do.

So that means blogging is possibly less likely unless you want to hear in detail about the cyst which I have decided to name Brenda.  Brenda was a friend who hurt me about as badly as anyone on earth when I changed from the person she knew to the undiagnosed manic version of me.  Brenda is someone I would not mind having removed from my life with a knife; it would have hurt less than her way of doing it, aka the completely chicken way of pretending things are fine and then letting me know they were not by not inviting me to her wedding that I had made plans to attend months before since I was supposed to be a guest.

We'll see if more interesting stuff comes up tomorrow......

Curled in a ball

But it's not about my mood.  Stupid, horrible, hateful cyst is back.  Not as fierce as before.  I think this has a lot to do with knowing exactly how to lay and not moving.  I took a (prescribed) vicodin a few minutes ago although that hasn't done much before.  I'm allowed to take 2 but i have to get up and write notes since I'm not in a good place to do that at the moment.

This is so annoying.  I want to ask to move surgery up, but if I do it messes with way too much.  I can do this for 3 more months, barring the cyst demanding to come out.  Besides, maybe less pain this time means it's going away.  Maybe........it could.  It would go against all the luck I've had lately, but it could.

Now I just need to leave this position to set alarm clocks and hopefully stay awake until my sheets are drying about 30 minutes.  At this point i really don't care about sheets much.