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Archive for October, 2018

Life Continues Unabated

October 30th, 2018 at 06:37 am

We got the biopsy results back today and there was no sign of disease, so they figure those areas were just badly inflamed. Other than the gastroperesis and an overly large stomach valve, there is nothing wrong with her G.I. tract.

So our next course of battle there is to see if we can wean her off her escitalopram to determine if it is in any way contributing to her extreme nausea and vomiting symptoms. She has not had a panic attack since going on the medicine for adrenal insufficiency and hypothyroidism. Both of these conditions, when untreated, can lead to symptoms that are very similar to panic attacks, so it is possible she was never having panic attacks, but was instead having adrenal crises.

So we meet with her GP tomorrow about reducing her dose and the schedule for doing it. She would start by going from 10mg to 5mg and then it would be whether that is for two weeks or up to six weeks before dropping to the next level or stopping altogether.

Meanwhile her emergency referral to the urologist came through and they had a cancellation with the P.A. for Thursday so she will be going there Thursday morning. Fortunately that does not interfere with my afternoon appointment with the rheumatologist. Wednesday I have to take Mom to the orthopedic surgeon for what should be her last appointment there and then she has her last PT on Friday. Next week is wonderfully empty of anything at the moment, although I do have to make an appointment for DD for another ACTh stim test and who knows when that will be.

Also on my list is to contact the sleep doctor about getting new c-pap supplies now that we have different insurance. I need to see which place I should go to get them. I also need to go to the doctor myself for a persistent sinus thing, but who has the time? Maybe next week.

I am currently working on chapter thirteen of my novel. Word count is at 32,101. I decided not to do NaNoWriMo. I don't need to pressure myself. I am happy with writing three chapters a week on my own timetable. It's working so why mess with it? It still feels like the only thing that is keeping me sane.

Quickly

October 25th, 2018 at 01:33 am

I'm checking in quickly about my daughter since some have been asking. Things don't look very good right now. We are waiting on biopsy results for stomach and esophagus. She's been peeing blood since the 17th and the doctor is worried about her kidneys which previously had stable cysts, might be unstable now or possible renal failure starting. CT scan tomorrow. The kid already glows in the dark. Still not keeping food down. It feels like she's dying.

I am overwhelmed, sick, stressed, and pulling in on myself, so probably won't be posting much. Feels like I'm on minimal life support. Prayers appreciated.
Still writing on my novel. It is the only thing keeping me sane.

MIL gave us $2000 because SIL got behind on her bills and she paid them. I was hoping to save for DS's education, but looks like it will probably go for medical bills instead. Money just flies out the window.

Novel Update and College Talk

October 15th, 2018 at 10:04 pm

Tomorrow is DD's procedure and I am so glad the day is nearly here. It has been such a long wait. I hope the results are a definitive diagnosis. I just want them to find something that is going to be solvable, that can finally give us a cure for her suffering.

I spent a lot of time writing this weekend and finished chapters seven and eight and part of chapter nine on book one. I also wrote a page and a half of back story for one character and then a long scene from book 3. So that all is proceeding nicely.

I'm thinking about participating in NaNoWriMo next month. I've always had things interfering in November before or been completely uninspired at that time of year. Lack of inspiration does not seem to be an issue anymore, and it will give me an extra incentive to keep writing. Not that I really need one right now. I'm being driven pretty hard by the story in my own brain.

I've got two beta readers at the moment who check for grammar errors and continuity and possible inconsistencies, then generally just cheerlead, so that is helpful, too. It's a lot different from when I was writing fanfiction several years ago, because there isn't that immediate feedback when you are posting chapters, so having cheerleaders is important to the process. It's also important that I am treating this like a job and carving out a few hours a day to work on it.

Once I finish the first book, I plan on getting it professionally edited, which is about $700 for a 400 page novel if I use the one editor I'm looking at. I don't know if I can find someone who would do it for less. At that price they do two passes through the novel. It's a lot of money to spend up front, but I've seen self-published books on Amazon that have not been edited and they are a nightmare to read. I'm adding a line item to the budget to start saving for it.

My hope is eventually to make enough with this to help pay for my son's college and pay off the Monster Mom Loan. DS is finally figuring out what he wants to do and it will be some form of engineering. He has taken one tour at the technical college for control systems and technology and he'll be taking another one next week for mechanical engineering. Right now he is leaning towards the first one.

The placement rate at the technical college for control systems is 100% at the moment, and their before graduation job placement is 61% with 39% being placed at or just after graduation. The placement rate for mechanical is 97%. If he takes the course for the former, there is a good chance he can get a job at DH's work.

So now we just have to figure out how to pay for this. It is going to be around $15,000 for a 7 quarter course, including books and supplies. If he takes mechanical it is a little less because it is a 6 quarter course. He would graduate with an AS, with transferability to Western if he wants to pursue a BA one day.

I really, really don't want him to have to take out loans and I won't take them out, so we've got to get this sorted. He doesn't have the math yet, so his goal for the next year and a half is to get his math where it needs to be. He's basically completed everything else he needs for me to graduate him except 1/2 a quarter of American History and 1/2 a quarter of English. But he's been lagging on the math. Now that he knows what direction he wants to go in, it seems to finally be starting a fire under him.

I am planning to save our tax return, but I'm not sure how much that will cover. We won't be getting any credit for having children, since he's eighteen now. We haven't contributed enough to the 401K this year for that to lower our taxes and I'm not sure our medical expenses will be deductible this year, since we are not paying for our own insurance out of pocket with post tax dollars this year. I haven't done the math yet on the expenses we have paid, but I don't think we're going to hit the percentages required despite feeling like we are constantly paying medical bills. We'll be able to deduct our tithing, but that may not be enough on its own for us to itemize.

Still, it ought to be enough to pay for at least one quarter, maybe two. I can nickel and dime a lot, but the big issue is that we still have to make a loan payment to my mother each month. If MIL gives us any more money this year we can save some of it for college costs, too.

I'm hoping DS will be able to get a job soon. It's hard when no one is even responding to his applications. That is what I really hate about online applying. When you could go in and hand the application to a manager in person, they had to deal with you a little bit. This faceless, easy to ignore way of dealing with things the fast food places do these days is irritating. But they won't even accept applications in person. It makes me mad when they continue to post help wanted signs and yet never respond to the applications in any way. He has completely open availability, too. So frustrating.

Well, anyway, that's what is going on in the Robin's Nest right now. I best get back to my chapter now.

Just Trying to Keep Her Alive

October 10th, 2018 at 10:20 pm

Things are getting pretty bad for my daughter. It really feels like we are fighting for her life here and everything is just too darn slow. Her hair has been falling out for a while now, but now it is starting to come out in clumps.

She had a lot of hair to start with so it wasn't so noticeable, just the sheer amount on her pillow or when she brushed her hair or that we were pulling out of the shower drain showed it. But now it is starting to get much more obvious. She wants to just cut it very short, but then the clumps will be very obvious. Right now she just looks like she has thin hair.

She went to the ER on Thursday because on top of the same symptoms her nose had been bleeding for six hours. Then she went in again on Sunday because it felt like her head was going to explode and she collapsed. They did a CT of her head and found nothing.

I wonder if this all can be caused by starvation and dehydration? Almost everything she eats comes up now, sometimes even as she is eating it. It is so frightening. The only thing I don't understand is why she isn't losing any weight. How can you not lose weight when the food doesn't stay in the system?

She's basically eating baby food now. Homemade baby food, but everything is pureed to try to help her digest it and we have eliminated a lot of foods altogether. She can't have lectins, so beans and lentils are out. She can't eat beef, pork, or lamb. She can have chicken, rabbit, or turkey if it is teeny, like in cream of chicken soup, but not very much of it. She had been doing okay on fish, but that's coming up now, too. She's had to eliminate all but a few fruits and vegetables, anything with a lot of fiber. She can't stomach whole grains or nuts or seeds. It's a nutritional nightmare.

Her endoscopy and colonoscopy are scheduled for the 16th. Only six more days now. It can't come fast enough. I am so, so worried about her. I worry she won't be strong enough to do it, or that she will have a fever and they'll try to reschedule. It took us 3 months to get this appointment. If she has to wait that long again, I really do think she will die.

Her endocrinologist got back to us with test results from the latest blood draw and even though they doubled her meds for adrenal insufficiencey, her cortisol levels are not, as he put it, reassuring. So now he wants her to repeat the ACH stim test, the one that almost crashed her the first time. It's been a few months and has to be done in the hospital at the same place where they do chemo and infusions. We are just waiting on the go ahead from the insurance company to schedule that. Her dose may have to go up further depending on the results.

The hypothyroidism meds were raised by 50 mg or mcg, I don't remember the actual unit, the last time and they didn't say anything about that, so I'm hoping those are doing okay now. The stress is messing with my stomach. I just want her to be well again. And then I want us not to fall back into some kind of financial nightmare due to medical bills. So far we are staying ahead of them with the Medical Fund, but that may not be enough. I still have $4000 in the Emergency Fund.

Writing is helping me cope. I've completed five chapters (12,347 words) on the first book in the trilogy and am ready to write the next chapter once I get this posted. I am glad I have this escape right now. You don't know how badly I just want to be able to run away from life right now and being able to write is keeping me grounded, even if I'm on another planet in my head.

Another New Baby--Prayers Please

October 5th, 2018 at 11:45 pm

Well, my newest great niece was born yesterday at 32 weeks gestation. She weighed 3 pounds exactly. So far she seems to be doing okay, but you just never know with preemies. They saved her cord blood for my nephew's wife and will be using that in her treatment eventually as well as starting the chemotherapy in the next day or so after his wife recovers some from the birth. The baby wasn't positioned correctly for a regular birth so they had to operate which means a bit more recovery time before they can start the chemo. They have named her Phoenix. It is one of the most appropriately symbolic names they could have given her. I hope this entire family manages to rise from the ashes.

Payday Report for 10/5/18

October 5th, 2018 at 11:36 pm

I do have some money leftover after paying all the bills for this pay period, but I am going to try to hold onto it, because DD had to go to the ER last night for IV fluids. I may need it for medical expenses, since the Medical Fund, including what I am putting in today, is basically wiped out after DH's new crown. The 16th cannot come soon enough for DD. I just hope they find something and it is something that can be fixed during the procedures.

$268.72 Tithe
_500.00 October Utilities
_400.00 Grocery Envelope
_400.00 Medical Fund
__75.00 Household Envelope
_275.00 Monthly Chiropractor Family Plan
__91.91 Internet
__36.00 Garbage Envelope
__50.00 Car Maintenance Envelope
_100.00 Gas Money
_100.00 Car Insurance
_120.00 Allowances
-------------
2416.63 Total Money Out

I Made It

October 4th, 2018 at 03:46 am

I made it through my super long day of three appointments, but the minute I got home from the last one around four o'clock I put on my nightgown and curled up in bed. DS asked if I was going to sleep and I said no, I was just done with clothes for the day. There is comfort in my big, comfy nightie and since I had nothing left to do for the day, other than make dinner, it was good.

I managed to write 4500 words last night and about 1000 so far today, though I hope to get another spurt in. My plot took a twist today that I hadn't planned but I am really thrilled about and I am eager to get back to it, although it may not be until tomorrow. There is only one thing on the agenda for tomorrow, so I should be able to get in a few hours.

I went with a super easy dinner tonight. I have two pounds of wild Argentinian shrimp in the Instant Pot and some Yukon Gold Potatoes in the Power Pressure Cooker XL. The shrimp only takes one minute from frozen once it gets up to pressure. I threw in a bunch of butter and garlic with it. I could have put in some wine as well, but I was being lazy and not wanting to look for the corkscrew. Since I only rarely use wine and only in cooking, it tends to fall to the bottom of the drawer and finding it means intense reorganization that I was so not into today.

I have to say I really love two electric pressure cookers. When I have something so fast that I can get on the table and the later cleanup is easy as can be, it just makes my life so much easier.

In my down time I am currently binge watching Pretty Little Liars. I am finally on season seven and eagerly awaiting the outcome, but I have had to give myself a limit of episodes a day so I can get my writing time in. So I guess I am only semi-binge watching. Then I'll go back to slowly getting caught up on Doctor Who via disk since Netflix doesn't stream Doctor Who anymore. I am a few episodes into the second season of the 12th Doctor, so I am quite a ways behind.

Even though I am super tired due to lack of sleep last night, I feel better today than I did yesterday, although it may be a false euphoria from my writing mania. Either way, I'll take it.

And on and on and on

October 3rd, 2018 at 02:06 am

I am so wiped out. I really need to go the the doctor for myself, but that is not to be. Tomorrow is going to be a pretty awful day. DD has an appointment at 8 a.m., so no sleeping in. Mom has an appointment at 10:40 and then another one at 2:30 and at some point I have to squeeze in a run to the chiropractor's office. I will be sitting in waiting room chairs far too much tomorrow.

This paragraph is probably TMI, but I don't care.
You can skip to the next one. Thursday was supposed to be a day with nothing on it, but we had to schedule a redo for my daughter's pap smear, because apparently there were not enough cells in the sample. It's a rarity for that to happen, so of course it happened to her. So we have to go back in on Thursday and she really doesn't want to because it was really painful the first time.

Then also on Thursday Mom decided to schedule a doctor's appointment without asking me what I had going on, so I have to squeeze that in, too. Her blood pressure has been running high for the last week, so it is necessary, but it is at on office that takes forever to call back their patients. One hour waits are the norm, so it will be painful. On Friday Mom has more physical therapy. If I make it to next week, there is just PT on Monday and Friday since she will be dropping down to just twice a week, so maybe I can get in to see the doctor myself.

Friday is also payday, so I will have to do all the banking and then grocery shopping. The ads came today so I will sit down with them and try to plan a coherent list and plan out my two week meal plan.

On the plus side, physical exhaustion and running around like a chicken with her head cut off seems to have reengaged my creative brain. I've written 6000 words on one of my novels in the last two days and about 10,000 words in the last week. Not, mind you, the first book in the trilogy, but the third, because those are the characters wanting to be written. Whatever. I go with whatever gets the words out of my head.

I am drinking far too much caffeine though. I think I've got myself addicted again, but I'm not going to try to get off it again until next week when things calm down a bit. I'm also not eating that great, a lot of sandwiches, which is far too many carbs for me, but I am just too tired to try to do it right right now.

Anyway, I best get back to real life. No rest for the weary. Just thought I'd throw out an update for my sanity's sake.