katec

So lets see when last we checked our intrepid Katester was mourning the loss of her mother which is not as sharp now but still present. In interesting developments, spending 6 weeks or so being unable to tolerate most food with the reliable exception of milk and applesauce has taken an interesting toll on my girlish figure - I now am skinner than I was when I met Eric, got married and/or gave birth to my daughter. It feels odd. I don't recommend illness as weight loss...and neither does my doctor. Monday I must, therefore, venture to the hospital to get a test where they measure the internal pressure of my pulmonary artery by going into it with a probe. I have had 7 of these before 6 were uneventful but the last one ended me up in the ICU for a week so can't say I am thrilled but my odds seem good. My doctor is concerned that the medicine that infuses direstly into my heart via the pump is calcualted dosage based one weight and when the calculated it I weigh 45 pounds more than I do now.

My scariest life lesson of the moment though is Colleen, she has never been what we would call robustly healthy and as a parent you start to not take "I don't feel good " with a grain of pinch of salt. Turns out this time she was right, Friday afternoon we discovered that she has psuedotumor cerebri, which is a fancy name for high pressure in her brain and spinal fluid. They know it isn't a tumor because they did an MRI so at least that one isn't playing in my head. I feel like a crappy parent and even worse we have to schedule my needle phobic child for a lumbar puncture. I just want to wrap my arms around her and make her better but I am sure that the fine fine doctors at the U of MN Children's Hospital can do a better job of treating this than I. I wonder if they can sedate me during the procedure as well as her. :)

Oh night of pain you may go now. Watched President Obama tonight and then Rachel Maddow's show, it was good. prayers for pain relief not as useful as narcotics. Husband gave wonderful ankle rub which did help for a bit and took a Tramadol which at least takes he edge off. Both kids performed at the Trans-Jam tonight for Trans day of remembrance, I am very proud of them....for those not hanging on my every word, one of the kids is feeling more and more pulled towards a change in gender appearance and the other so far has only dated transpersons. I love that our world is big enough to embrace these kids, it certainly wasn't when I was a kid.

Scare today when C had to be rushed to the ER - she has been having issues with function in her hand and wrist and she reported double vision in one eye. The doctor was not fooling around. They checked her found nothing to panic about yet and will be calling in the morning to schedule a MRI and full neuro exam. It didn't stop her from the spending the evening as I mentioned above.

I don't know if I am sick on top of the pulmonary artery hypertension or what but I can totally understand the quote "what fresh hell is this" I fear I am running out of time. For those playing the home game where I am a failure at staying caught up. I was really sick and didn't know it, went in for a routine test and wound up in ICU. They fixed it with a new drug that runs on a continuous infusion through a pump on my chest. It does help the breathing. Sadly the side effects are hellish and I have no energy at all. sometimes it takes too much energy to change the channel. I have watched the same show on a channel twice when the repeat....mostly fortunately MSNBC and that Rachel Maddow (mmmm eye candy! and so funny and smart) I used to dream of meeting her in person someday. I have watched her show since the first night, only missed a few when stranded in the hospital without access to MSNBC. I fear I may be winding down and then I fear I am being silly and overly dramatic. I dunno world.

My thoughts are all tangled up right now so this may make even less sense then usual. I have lost my mom. Oh her body seems to still be working at least as of now no-one has called to say otherwise. Her mind has apparently gone walk-about and there is a less than 50% hope that it will return. It started a couple weeks ago - she has Alzheimers so this is not a shock entirely - she started throwing up blood. Turns out she had a bunch of tiny pre-ulcers that were all inflamed and irritated, totally curable with Pepcid or Nexium etc. BUT in order to find this out they had to give her an endoscopy for which they had to give her the twilighting drugs that make you forget the unpleasant parts - I am guessing so that one won't rebel the next time a doctor thinks this is a grand idea. Apparently she just hasn't bounced back from them. She was in the hospital for a week and now she is back in their home facility but instead of being in the apartment with my dad, she is in the skilled nursing wing. For whatever reason, my dad can't seem to manage to call me from her room so that I can talk to her despite my requests and the radio silence from his end this past week has been stunning.

I knew eventually that dementia and Alzheimers would take her away.... I went through this with her mom, my beloved Granny Kate, and her sister but I didn't think it was an overnight thing - I thought she would just fade away like steps that I could get used to.

So....I was on the phone with Dad yesterday. Most of you know that my parents were already considered freakishly old when we kids happened in their lives my dad is 87 now and my mom just turned 85. So I was on the phone yesterday checking in....and my dad has to tell me that my mom's spiral into the haze of alzheimer's has increased....and it hit me that I will probably never in my life actually physically be in the presence of my mom again...like not ever.

My mom is my hero in many ways, I was just re-reading one of my favorite blog posts from Sigrid Ellis about Miles and Ekaterina from the Vor books by Lois McMasters Bujold. anyway the point being my mom...she was very broken when I was a kid, she suffered terribly from depression and the cool Prozaccy drugs and better hadn't come along yet. I left early and then built a relationship with her after she became medicated mostly over the phone. She has so many qualities that I admire and wish I could emulate, and now it is too late for me to be able to explain that to her in a way that she would be able to accept and comprehend because it all involves memories that she may or may not be able to access and if she can't it makes her sad or angry and that is so anti what I want to do. (Grammar and sentence structure were important to her, thank god she can't read this)

I guess I don't know if there is a point to this post....maybe its trite like hug your mom when you can - maybe it is more profound like even if you are older, you can change the patterns of your life, you can develop new patterns with old people that are more successful than they used to be...that it is okay to be flawed and that striving to be better and see yourself in a clearer light bumps and lumps and all isn't a bad thing but it only if you temper it with the same gentleness that you would want someone else to temper their view of you.

All this is swirling in my head and seems kind of weirdly random as I write it but its the start of a train of thought that I don't want to lose.

So spent 4 and half days in the hospital - got officially diagnosed with congestive heart failure although everyone seemed to think that was kind of a duh diagnosis it wasn't for me and I have been grieving it on and off since.....rage sadness plus feeling like I want to just give up.

Broke again so of course my body wants food it can't have but at least hubby had some hours so there may be a paycheck on Friday.

On the good news front no one in the hospital could believe that I was running around with no oxygen supplement so oxygen has come back home to live...it makes things more manageable. Husband is working two long shifts in a row, 15 and half over last night and 14 and half tonight...we NEED the money in the worst way but it is hard in the frame of mind I am in to have him not here. My daughter (I think I will call her Tweety for a while) hates it when I appear sad or actually cry and with her stress and panic attacks hating something means melt downs. I am craving watermelon and at least that will be an option on Friday or Saturday maybe.

The house is a mess, I wish I had the get up and go to clean it..I mean really I was not the best housekeeper ever but it is terrifying to me to have it feel out of control, I am constantly afraid that some service provider is going to say not safe and make me leave and that would break me.

I have these ideas in my head but I can hardly find energy to make my fingers type let alone marshall a project. Tweety has informed me that she wishes to attend summer school....which I am 150% infavor of but the stupid school district doesn't seem to actually want students since they are not returning phone calls and their website is NOT useful.

I am supposed to have an AHRMS worker to help with this but my last one had to go on medical leave and the agency doesn't seem to care to provide services or even call me to arrange for a new one. Nor have they informed my PCA or me that the county has increased my PCA approved hours...its like the county wants to give them money but they don't want it....if I were still working, I would say its a terrible way to run a business.

Tweety also wants to go back to regular school for next year, which is again a great step but of course its after enrollment deadlines and I have no assurance or faith that she will attend having seen nothing from her that indicates effort. I want to trust her word but I am just too damn tired of being discouraged. She also informs me she hates this apartment and wishes we would move. I admit I dream of an apartment where I could get in and out of the kitchen to get a drink or something so off to look and actual accessible housing. Not holding my breath.

sigh discouraging day. hope tomorrow is better.

Sigh its been a while. This last week becasue I feel like crap. On the upside, problems that I thought might derail my trip to Wiscon have been solved so as long as the antibiotics I need get ordered and work I should be good.

I have no idea how to cut for gross so just stop reading now if medical stuff ooks you.





I get this thing called Small Intestinal Bacterial Overgrowth (SIBO) it sucks my body apparently abandons all hope of digesting food and just sends it straight on through so to speak. Especially hmm anything I really like to eat and all vegetables. Even when I don't have the SIBO, the list of foods that my body tolerates is shrinking. For the last week I am living pretty much on grilled salmon and yogurt...well I try to eat other things but well...so far no good. The worst is that at the moment the SIBO is at its alltime high...Bathroom time is every 2 to 3 hours and if I eat anything I feel all bloated and gassy and get stomach cramps.

Can I just say from my reading it sounds like the dumping thing that WLS patients get...certainly has convinced me for the millionth time that WLS is NOT for me.

The other capper is that I am supposed to take a diuretic every day, I just can't do it at the moment so I worry about that. Hopefully my doc will get the prescription sent in because it is such an easy fix - 10 days of a certain antibiotic and presto a month or two of relative peace.

Lots of change.

The biggest one is that we finally had to pull Colleen out of school and enroll her in the all online program. Well actually its the same school, just all online. I really didn't want to do this BUT as it turns out, this has freed us. No more long involved tears tantrums and drama. I set a firm schedule with expectations and so far she has stuck to it and my little sunshine girl is back. Her lowest grade at the moment is a C and the rest are all A's and B's but better than that she is meeting and/or exceeding her due dates. Needless to say this success has buoyed her spirits and although she still has crippling anxiety attacks we are starting to be better able to isolate the triggers since it isn't full out all the time freak out mode.

As for me, well had a scary thing right before Val day, I ran out of air passed out and met the floor with my face full force. Broke my nose, my thumb hurt my rotator cuff in my shoulder and gave myself some amazing bruises too. oh and a ambulance ride in a snowstorm. Sigh, I am mostly recovered but the next day they came and took away my oxygen machine (unrelated) Then I got to do testing and proved (again) that I still need supplemental oxygen so now they have to begin the process to get my machine back. I would scream but it takes too much air.

On the upside, I got a scholarship(congoingship?) from Wiscon so I am finally going to be able to go. Eric is coming with me in a highly worked out deal involving me getting Wiscon and him getting less complaining about Convergence at least this spring.

I am on a new nebulized medicine which has given me what my (I fear) become a permanent husky Kathleen Tirner quality for my voice BUT!!!! while it is in effect, I am able to breathe much better and it is a vaso dilator so one can assume I feel like I breathe better becasue more oxygen is circulating in my system. Whee!!!

I do have to do a new round of IV iron infusions becasue as usual they ran tests and my iron is low. (Okay squicky medical next) about half the time my body has decided that digesting anything but yogurt and fresh fruit is too much trouble so it just passes everything along post haste. Living on smoothies, milkshakes and strawberries is not my idea of fun....I get hungry but then often I am punished for eating. Today we tried a grilled cheese sandwich with oragnicish cheese (no preservatives) real butter and healthyish white bread. Hope springs eternal.

So I have a lung disease - this means that at any given moment I have to be able to put on an oximeter and get an accurate reading on how much oxygen is circulating in my bloodstream. You know what this means? No nail polish. I am not the stereotypical girlie girl - but when I worked I used to spend the money to get my nails done on a regular basis, because it made me happy. I even had acrylics which I loved. I kept them pretty short, lots of people never knew that I had them, but I used to get compliments on the colors and stuff. I miss it a lot

So at the moment I am full of rage at a family who lets me down on a regular basis. I used the pudding/vegetables analogy tonight with them hoping that they would understand it. The deal is there is stuff that has to happen to keep this house functional....like dishes. There is stuff that I want to have happen like sweeping the floor every couple of days because I am barefoot a lot and the little stones and crumbs hurtses my feetes. Then there is the stuff that they want - like to go to gaming, or go on a date. I have now in a desperate moment explained that the stuff they want like the gaming and a date is the pudding....the dishes, taking out the trash etc is the vegetables. They can't always just have the pudding.

I hope they get it. Today was the last straw for me. If I could just do it myself I would, but I told my husband to quit blowing smoke up my ass. I cried all day off and on on Thursday, it was a sucky day. Among things said to comfort me, was don't worry, Saturday we will get the tree up and get some groceries so you can make christmas cookies. See we have no money this year, but we have decorations, lights and a tree...we could have cookies....it isn't the lavish christmas of sometimes but it is enough for me.

I bet that you can guess where my tree is...yup in the box in the basement. But E went on his date (who stood him up so then I get stuck with pouty man) and came home and his facebook got updated and Colleen got driven to Brooklyn Center for gaming, and I got...nothing. NOT ONE FREAKING THING oh except to nag at colleen and Eric. I didn't want the world, I wanted the Ninja cleaned so I could make dinner. I wante dthe tree put up but NOT decorated so that Yoda can climb it a couple times before he breaks the ornaments. heck, I would have settled for the trash being taken out.

Oh yeah and I had asked if after his lunch date we could go to cost cutters so I can get my hair cut. I don't care at this point about cute, but it is hard enough for me to manage shampoos in the cold weather without dripping long hair down my back for an hour. He had said yes, I accidentally fell asleep, so I get that he wanted to let me sleep...but why then do I get woken up by my kid about gaming but no acknowledgement that there had been a promise of a treat. I didn't care that it didn't happen but is it too much to ask to just have it acknowledged..."hey I am sorry we didn't get to the haircut"?