Catching you up

I haven't posted much lately.  Basically I'm sleeping and working and that's it.  I'm still not feeling very good and the depression is ongoing as well.  I'm not a highly functional person right now.  As much as I love work it is too much right now and I have to stick it out until Christmas weekend before I can rest much.

I am responding a little to the meds I'm on.  The coughing is less and more in clusters now than it was a week ago when it was every second.  But it's still with me and until it is gone and stays gone a while I won't trust it much; I've responded partially to antibiotics at least 2 other times then gotten sick again.  I will say I MUCH prefer the 30 seconds of bad taste in my mouth from Spiriva to 60 minute nebulizer treatments.  Everyone seems to agree that I can't take this much longer and everyone wants to avoid the next step.  But I've expressed my wishes now to do steroids to both doctors if this fails.  So that would mean going to the hospital right around Christmas.  Or even for Christmas which sucks for messing up Christmas for my family but if I went the day I see Dr. Body (the 23rd) then I might not miss as much work.  At least I'll know by then how I'm doing so I can be prepared.

I talked to Dr. Brain about hospitalization today.  To my great relief I'll be able to be on a medical floor with a consulting psychiatrist who will give PRNs to keep me sedated as needed.  She said I could do it closer to home but my preference is to be at the hospital where I see her.  For one thing she has influence over the psychiatrists there.  For another I am afraid of the psychiatrists in the city where I would be if not where she is.  They did some pretty horrible things prior to my diagnosing myself and finding real help and I don't want those doctors.  A lot of them also refused to take me on their regular caseload without even assessing me, just based on my diagnosis.  And I have less and less trust in doctor's ability to understand my needs after having arguments with doctor's who don't seem to know what an MAOI even IS.  No matter what happens if I'm near her I can reach her and she can talk to whomever is treating me; she said she doesn't do hospital consults but her office is with the people who do.  So that's going to be the plan.

Psychiatrically I'm not in great shape.  This has worn on me badly and so I am depressed, but I feel even worse than I probably am because in my mind being tired like this is a WARNING!  NOTIFY TREATMENT TEAM AND BE ON ALERT and in reality a great deal of the fatigue is physical.  However, being sick for so long is scary and makes me feel powerless and so that does not make this easier.  Counting the period of runny nose for several weeks before whooping cough (that I called allergies) I've been sick for almost 2 months now.  I also have not slept well in all that time because I can't get comfortable and I think I wake up coughing frequently and reposition myself but I am so sedated at night that it is impossible to know that for sure; I do lots of things at night in my sleep.

Partly I feel bad psychiatrically because I'm not myself.  I hate shifting patients around to different days and then working a weird schedule.  I hate that I'm forgetting things and messing things up at work.  I hate that my patients aren't getting the energetic therapist they deserve.  My house is horribly messy/basically dirty.  My mom is going to try to come help tomorrow but may be held back by snow.  I hate that I am not working at my usual rate, some of which is my fault and some of which is not. I'm too tired to cook and most things don't appeal and I'm gaining weight to show it.  And the thing that would help the most is a Seroquel boost.  I did this last weekend and it helped, but since then I've been so incredibly tired I've had to cut my Seroquel and klonopin doses just to get out of bed.  Tonight I took the dose I need at 6:30 pm so hopefully I'll sleep by 8 or so and be ready to work on time.

I look sick.  I always have fair skin. Now I have pale,pale skin that is flushed from heat, cold, fever or the exertion of coughing.    Today I noticed that even my hair doesn't look like it feels good.

So, there is a tiny bit of positive news and the rest of the news is that I am struggling hard to make it through this and that's pretty hard when you don't even know what it IS.

I don't think there is a whole lot else I can say right now.  Well, especially right now as the meds are doing their thing and I need to set alarm clocks, feed cats and get snuggled up.

Hopefully I will be able to think well enough to not be so quiet except for medical updates soon.

In lieu of a real post

• The dog is fine. Our vet, with almost 40 years of experience, had never seen the type of thing she had grow on an internal organ.  Apparently she and I have more in common than I thought: crazy issues. The tumor was so big that she is visibly smaller.  The vet offered to show my mom; she declined.  I'd have looked, of course.  But it was just a fatty growth and she is fine and recovering well.  I had to go to my mom's house and use therapy skills to do a sheet lift to get her out of the car, but once she was out she's been walking around and doing well.  She was a bit miffed at my mom yesterday and when I got there she was so happy to see me.  I was so proud of her because we had to roll her onto the sheet and then I lifted her front until it was out then had my mom hold that when I lifted her rear and she stayed calm and let us.  Usually she's a neurotic mess.
• I am very tired.  I actually slept until nearly when I should have been at work this morning.It worked out, but so embarrassing.
• The breathing med may be helping a tiny bit.  By tiny I mean TINY but it is something.
• I have decided that steroids may be the last resort and I've begged to avoid them, but based on whatever I work out about them with Dr. Brain I am ready to do that if this fails.  I can't keep going like this and at least if I got through some sedated steroids I'll get some drugged rest.  I can't function this tired.
• My tiny little baby niece has hit the 95% for weight and head size.  She's a round little thing.  I saw new pictures today and she is so cute.
• Today marks 10 years that I have officially been an occupational therapist.

A real post sometime.  When I am not so tired I want to curl up and die.

Gracie

There's another reason I've been so emotional and struggling here.  The first year I was working I had a chance to get an adorable 1/2 lab, 1/2 golden retriever puppy for my mom. Her golden was approaching 20 and I didn't want her to suddenly be without a dog if the elderly one died.  (She lived another 2 years amazingly).  So I worked out this huge secret.  I didn't get the puppy until the Friday before Thanksgiving when my mom would be on break. I actually had her at work for the whole day; I carried her around for my entire day. I had my mother's friend take her out and he invented ridiculous errands to do, then when I called him with a code ring he abruptly brought her home.  I had parked up the street and hidden in my basement room.  When he thumped on the floor I brought the puppy up with a big red ribbon and said Merry Christmas.  It was hilarious because she immediately assumed the puppy was from him.  When we got it straight Gracie quickly became part of my mother's life.

Gracie is a weird dog. She has bizarre fears.  Thunderstorms require sedatives.  I had to sedate her when I was dog-sitting with whooping cough b/c she is afraid of coughing.  She also will leave the room if you have a spoon and bowl in the living room.  As a puppy she once barked at a broom for hours.  Where my mom used to live she became afraid of the driveway.  She wouldn't walk up and down stairs until she was about 40 lbs.; until then my mom carried her to her crate.  She failed obedience school, which was hilarious b/c if the male teacher had her do something she was perfect, whereas my mother had a huge struggle just to get her to walk from the car to the class.  I've seen her refuse to go for a ride, which she loves, because the car wasn't an SUV or because the seat was folded down and that is NOT how she rides.  She is just different.

We bonded that first day and she loves me and I love her as much as if she were mine.

Tomorrow she goes in for surgery to remove a large tumor from her spleen.  There is a 50% chance is it not cancer.  My mom has had to make some incredibly hard decisions including writing a letter to the vet saying that if this is going to be rapidly terminal or if Gracie will only suffer for the remainder of her life that they are to not wake her up.  If the diagnosis/prognosis isn't clear or it appears good or they can remove it all then Gracie will hopefully be home tomorrow night.

We are very hopeful.  Gracie has been through a lot medically the last 6 weeks and the tumor was an incidental finding.  She is acting totally normal, including wrestling hard with the other dog for 45 minutes last night while my mother was writing the letter to the vet.  She has no pain, no changes in behavior, and well, for a weird dog she shows her feelings through behaviors.  Even if it is cancer it may be totally removable.

But I'm scared.   I can't stand the thought of life without her and thanks to feeling like crap I haven't even gotten to go see her to give her a hug and a belly rub (her love language).

Getting through tomorrow is going to be hard, and that would be true if I felt ok, which I do not.  Between my mom and I our vet has now had the hospice for pets talk twice in 6 weeks.  The difference is that my cat DOES have something terminal and her dog MIGHT. Nonetheless it is a rotten conversation even though He's been totally supportive of what both of us have wanted (in my case I don't want testing or treatment of any kind; I don't want to monitor numbers because I know my cat and when she doesn't like life anymore I'll know.  I do watch her weight and make sure she has tons of food to eat, but that is all I will do for her.  If her kidney failure makes her uncomfortable and there's something easy to make her comfortable that extends her life we'll do it, but I will not change her diet, I will not do a lot of testing that just leads to dread on my part, and I will know when it is time.  This cat and I have been together for 13 years and I've been around her for 15.  She can read me and I her.  The same is true for my mom and Gracie.  It's very hard to pray that if she's going to die that the vet is able to make a clear decision tomorrow though.  As much as I hate losing her I would hate more having her recover from surgery, deal with pain, and be gone in a few months, especially if those months prohibited her from being happy and doing what she wants.

So anyway, please pray for my mom and for her Gracie.  It's going to be a long day for both of them.

last straw

I wound up home again today and will now have to work on Sunday to make up, but I felt so lousy I just couldn't try.  My doctor's computer system remained down all day but I was able to get the results from calling the office and forcefully not letting the woman hang up until I had both tests. They were clear.  So I don't have pneumonia, which is good, nor a sinus infection, which is kind of too bad b/c we know how to treat that.  I have questions for him and the system won't be up until tomorrow sometime.  Stress.

I was paid for the first time Friday.  I had to be paid by check because of a problem with my direct deposit information.  Unfortunately they paid me very wrong.  I'm salaried during my 90 day learning period and they paid me instead my hourly rate for office work/meetings which is substantially less.  I realized this Saturday and left a message for the correct person, also asking her to get back to me, stressing I was home sick, please call me there.  nothing.  I called again today, again begging her to call me back because I have a huge overdraft and have not wanted to cash the check since it was an error and I don't know how they handle that.  Again I said to PLEASE call my home # so that I could borrow money from my mother if I needed to.  Nothing.  I just woke up a little bit ago and am going to take meds and go to bed soon.  I checked my work voicemail and she left me a message showing she never listened to a word I said, something about I could cash the check I just needed to correct the direct deposit.  IT'S NOT THE RIGHT CHECK!!!!!  So I left her another message, crying (which I didn't mean to do, I'm just so sick of being sick and need things to go smoothly and am tired of them not), explaining AGAIN.  This person is very nice.  She also isn't great at attention to details, causing a big ordeal with being fingerprinted while on vacation and needing to submit to be reimbursed for that,  and also she forgot another part of new hire stuff as well as sticking me with little to do for a day because of not adding me to the computer system before my hire date.  But for pete's sake, this has cost me a TON of money and she's the one who entered the incorrect information in the first place.  "I'm sorry and will fix this ASAP" seems in order.

So, right now my life is this:  I am totally stressed about both money and work.  I'm exhausted no matter how much I sleep.  I'm coughing and feel crummy and can't do a thing about it except pray these last 2 meds work because if they don't it's time for steroids because anyone else would have had them about 2 weeks ago because of the inflammation in my breathing things.   I can't have them without risking mania and if I have to do it I want to be in the hospital.  Saturday I have to set up a plan for this with Dr. Brain. The current plan is to try to get through this course of antibiotics and hope it works, but if the trend continues and I feel worse ultimately we won't make it 10 days on this.   I also am completely upset because I keep missing work and it's only my 3rd week.  I'm making it up but if I go on steroids it will be more time off and I'll need to explain some of what is happening.  I probably need to do that tomorrow anyway since it's a likely thing.  Keep in mind that I can be released from my contract for missing work during this time and being able to say that they are treating something specific would be helpful.  I am overdrawn at the bank despite having a paycheck in my purse and I can't get the right person to listen to FIX it.  And tomorrow I have to work no matter what.

I also have reached my usual point of if no testing shows anything wrong am I making this up?  Am I subconsciously coughing for attention?  I could tell yesterday that my dr. doesn't think so, but he has no more ideas.  I think he is concerned I've developed an allergy and have asthma. Seeing a specialist for that is high on  the list and again, I don't know HOW because of work.

And now I can't quit crying.  It was actually somewhat easier when I thought this was just more reaction to pertussis.  I'm not 100% convinced it's not; what Dr. Body says and what I've read conflict a bit.  Yet he's usually right now I'm going with him.

I just want to understand.....

Well, THIS is fun

I saw my baffled doctor today. This is not the whooping cough; it's a whole new problem but he doesn't know what.  So I had a chest xray and a CT of my sinuses, got some new meds (another antibiotic and breathing med) and came home knowing this is getting to be the last resort before steroids.  I was actually typing an email to Dr. Brain warning her of this when I got 2 emails from my doctor.  Unfortunately the website where I have to go to read them is down.  Again.  I am so tired of it not working, which seems to be 25% of the time.  And once it is down it often takes quite a while to be back, meaning I may not know the test results until I have to call in tomorrow because there may not be an answer by the time I leave in the morning.  Nothing like an anxious wait to keep life exciting.  Since he didn't call I'm assuming I at least do not have pneumonia, but who knows and some answer would be really nice.

He was really nice.  I think he's picked up that I'm touchy lately because he made sure I knew the frustration on his face was feeling bad for me and not knowing how to fix it, not because I keep coming back with this bug.

So, I've seen the doctor AGAIN and I have no more idea what is wrong except for something with some lymph nodes that I didn't ask enough questions about to know.  I'm a little dazed today.

So please pray that the program works soon and that my answers are there.

Again

I haven't stopped coughing since Saturday and I'm wheezing again and now clearly have sinus infection except I have no idea where it draining.  Maybe it's not and that's why it feels like my head is going to explode.  So I just did a lot of things to make my life feel worse than it is; I stayed home, meaning I don't get my comp day Thursday meaning I don't get to go see my niece and may not see her until the 26th.  I have to so see Dr. Body this afternoon.  The best part is that I seem to have coughed hard enough to burst blood vessels in my eyes, so they are now both pink all the way around.  I was going to work despite feeling crappy until I saw my then red eyes and decided looking scary wouldn't win me friends.  Besides,clearly my current antibiotic is not helping here.

I talked to Dr. Brain finally.  She thinks I feel bad because I'm tired from being sick.  She also promised me that I am not running out of Seroquel doses, a source of great anxiety since I'm already on more than recommended and didn't know how high she'll go.  It sounds like she'll go as high as I can tolerate.

The thing is that I'm supposed to be resting, but when?  I have work.  Then things keep coming up for weekends.  Saturday is Dr. Brain.  Next week our Christmas party for work is on Thursday so that Saturday is Dr. Mind.  Then Christmas which I should have 2 days that week to rest and do nothing else.

I just want to be past this and move on.  Not happening today though.  I always think this time of year drags because it is stessful and constantly busy but this year is topping them all b/c it's the same as usual but I'm not.

Oh well.  I'm just going to complain if I keep writing.  I'm at that point that I think most people get  to when sick where nothing is right.  I'dlove to sleep, but I can't fall asleep.  I can't get comfortable to read. I'm hungry and nothing appeals.  Etc.

Back to my crazy existence in this bed.....

Sleepy

Between the narcotic cough syrup, my constant fatigue because that's part of whooping cough, depression, and now added tiredness from increasing my Seroquel dose and this is one sleepy lady.  I'm done sleeping for tonight which is fine, but I suspect that after my training is over today that I will be going home and going straight to bed.

In other news I talked to my supervisor about the person who has been slowly working toward helping me a few hours per week.  Getting her trained has taken months, and she still hasn't done an assisted eval from beginning to end (granted the patient was sent to the hospital but she also didn't seem to understand that she needs to plan that her first eval or two, with me, are going to be very long, like 3-4 hours of time to complete.  She needs to devote a full day to this, whether that means working on a Sunday with me or whatever, but I am getting so I'm going to need her.  My caseload is getting big and busy and I have several people who need quite a bit from me.  Going to her and saying that I really need this to happen is a big thing for me so I'm proud of it.

I may get to see my niece this week.  As long as Dr. Body says it's ok I'm off.  He told me one month which is up the 8th, but I have to make sure that it's totally safe with me coughing now still although rarely except since my forgetting I can't tip my head back.  Now I know not to make a dental appointment until I can breathe.......I forgot already how scary that sensation is.  I'm hoping to get in a breathing treatment or two tonight to help fix what I did, which I think was make the goop move around into a bad position and then it almost seals.

And that's about it from here.

Let's see...

Not a lot has happened lately.  I am just so tired.  I had a big mess with the pharmacy Thursday that showed exactly how tired and emotional I am.  I gave up on waiting for Dr. Brain so I upped my Seroquel to the last dose I have control to use on my own.  Last night I slept better and I think I'm getting sleepy now.

Physically I've been better, just very tired.  It doesn't take much wear me out.  The coughing is better but I do have a sinus infection and am on antibiotics for that.  In a lab part of my training today I had to lay flat with my head tipped back and had to stop the demo b/c I couldn't breathe.  I have coughed a zillion times since and had to take the narcotic cough syrup.  I have at least learned to stay calm, leave the room, walk around slowly and focus on slow breathing and when the anxiety reduces so does a bit of the feeling of being unable to breath.

Emotionally, depression is no fun   Obviously.

I think I am actually getting sleepy so I'm stopping abruptly...  I hope..........

Fast

I'm posting from email just to let you all know I'm ok but my netbook broke and I'm out of town so the only computer access is the public hotel one.  So I'll be back when I get home to my real computer. 

Pictures Pages

I'm in a crappy mood so here's some happy pictures from my vacation instead.

I know it's blurry but I love the action shot.  These 2 never came back after the first day for some reason.  All my wildlife was cardinals until I saw a raccoon the size of a house in the tree but he hid before I got a picture.

Crazily placed rocks are part of Appalachia because it was formed by glaciers.

Pretending to be artsy.....

I took a trail called "Upper Falls" excepting to see the top of the waterfalls.  Instead it was a beautiful lake.