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Viewing the 'Medical Issues and Spending' Category

Life Continues Unabated

October 29th, 2018 at 11:37 pm

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 24th, 2018 at 05:33 pm

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 02:04 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 02:20 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.

Payday Report for 10/5/18

October 5th, 2018 at 03:36 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

Medical, Medical, It's Always Medical

September 28th, 2018 at 01:09 pm

I've been losing my financial focus a little bit lately. Taking care of Mom and shlepping her back and forth to physical therapy and taking my daughter to multiple doctors appointments and blood draws has been very draining and we have gotten fast food twice this week because of it. I had one day where I could barely move because I sat in waiting room chairs for 3 hours the day before. Rheumatoid Arthritis is a painful disease and I think I've used more painkillers this week than I have in a year. I've also been drinking caffeine which is not a habit I want to get back into, but it feels like it is the only thing that is keeping me going.

So far, these are the things that are wrong with my daughter:

Granuloma anularae
Gastroperesis
Hypothyroidism
Adrenal Insufficiency
Nearly legally blind in one eye
Brain damage from the skull fracture a few years ago, though she has mostly learned to work around that, it affects her reading and her ability to process numbers quickly
PCOS and/or Endometriosis
Hip Dysplasia (born with)
Depression and Extreme Anxiety (controlled with drugs)
Some as yet undiagnosed auto immune disease (blood markers for something, but they don't know what)

It is expensive to be this ill. I am hoping we can get her on disability at some point, that point being before she is 26 and gets kicked off our health insurance. Maybe sooner. That way it can help pay for her medical bills or to purchase an insurance plan for her. She is unable to function well because of the pain and exhaustion and frequent vomiting from the gastroperesis that leads to dehydration and malnutrition. Some days the medicine helps, other days it does not. She has to be super careful on what she eats and her choices are quite limited.

I do not think she will ever be self-sufficient and be able to leave home. Every time she seems to be getting better another malady turns up and she gets worse again. But at least they are finally finding things. Things that are not easily treatable, but still, having diagnoses helps mentally.

Lots of Medical Expenses Forthcoming, But Then What Else is New?

September 17th, 2018 at 10:44 pm

Well, I made it through two of Monkey Mama's long posts without being logged out, so I am going to attempt to actually post an entry today. There hasn't been too much going on financially, but that's because we haven't been billed yet. Once things run through the insurance and we get billed, I expect we are going to take a big hit in the next couple of weeks. But our out of pocket max on the new insurance is $2400 per family, so it'll be capped at that.

So last week on Monday DD had an appointment at the gastroenterologist and she decided that DD needed to have a gastric emptying test, which is a very long test in a freezing cold room with a gamma camera. That may take DD's deductible and out of pocket max right there. For those who have no clue what this test entails, they feed you radioactive egg whites, 2 pieces of white bread and jam. Then they put you in one of those doughnut-shaped machines, but it is not a CT scanner.

They take a picture of your stomach to start for a minute, then later they do it for 30 minutes, then wait an hour, do it again for a few minutes and repeat like that until 4 and 1/2 hours are up. All the little specks of food glow on the camera and the computer counts how many there are at each interval. The room is kept cold to keep the camera cool. I really could have used a blanket. And the waiting chair was atrocious. It took me until today to have my back, hips, and tailbone feel normal again and the test was on Thursday.

On Tuesday last DD and I both had dental appointments while DH had one on Monday with the new dentist, which we didn't actually have to pay anything on because we have dental insurance now. DH had a $50 co-pay, but that is it for the year on co-pays for normal services. He's going to have to have a crown though, and that will cost us $670 out of pocket, but at least they cover half. He will need some cavities filled at some point as well.

I do like the new dentist and the new receptionist, but I am very grateful that my hygienist is the same person. I get anxious at the dentist and I don't like change. But I really like the new dentist a lot. He reminds me of Dr. Sweets on Bones, but without the curls, even though he is of East Indian descent. Facial structure, nose, and eye shape are almost identical. He's a very nice man, too. And I got a clean bill of health on my teeth. The only part of me that isn't falling apart, I guess.

On Friday I took DS to the eye doctor. We have vision insurance now, but we still had to pay $179 out of pocket between the exam and the glasses. That's okay, though, it is still way cheaper than $480 and I knew it would cost something. It'll be a couple of weeks before his glasses come, though.

My rheumatologist cancelled my appointment and couldn't rebook until November. I mean, seriously? She had another family emergency. She has A LOT of those. This is the fourth appointment in a year and a half that has been cancelled due to that. She's younger than I by about 15 years, so I doubt it is aging parents, but you never know.

Tomorrow is Mom's surgery, but she is driving herself there. We will pick up the Jimmy when we take her walker up later when she is out of surgery and in a room. They don't want the patients bringing their stuff up when they go in because they say they don't have any place to store the stuff. I find that less than believable considering I've seen some of the storage areas, but whatever. That's what they do. Mom should be in the hospital until Friday.

On Wednesday, DS goes to the dentist and then on Thursday I have to take DD in for labs. Next week starts 3 days a week of taking Mom to PT and DD has appointments that week for the endocrine doctor and the gynecologist. Endocrine doctor thinks DD has PCOS, so we will bring that up with gyno. Maybe we can actually get something done about it, but doubtful.

So yeah, it's been a big couple of weeks for medical stuff and I don't know what most of it will cost, but at least there is a cap. October brings DD's endoscopy and colonoscopy and DS's consult with a sleep doctor and possible scheduling of a sleep study. Plus lots of shuttling Mom to PT. Prayers that I don't go insane taking care of everyone but myself would be lovely!

I am looking forward to payday on Friday. I don't like only getting paid every two weeks. I know I will eventually get used to it, but I still don't like it. Even though everything is going fine with the budget and running smoothly. It is just weird and I hate change with a passion, as you all know.

I made up some TV dinners tonight. I made turkey meat in the Instant Pot and a combo of sweet potatoes, carrots, red potatoes, onions and green beans in the Power Cooker XL and a thin gravy in a skillet and then mixed it all together in some of those Glad plastic containers. I came very close to it tasting like the Stouffer's Fit Kitchen turkey dinner. We had some for dinner tonight and then I froze 3 dinners and put one in the fridge for lunch tomorrow.

My nutrition has been slipping lately or I've often gone to eating just once a day because of the stress. I have a couple of days with Mom gone where I can do some big batch cooking and get some stir-fry TV dinners in the freezer as well. Then when I am taking care of her and don't have much time to take care of me, I can just heat these up and eat them without worrying about it being garbage food. These will give me some lunches, at least. I do well on two meals a day, but really not on one and snacking on junk food.

Mom has also bought TV dinners this time. She refused to get them last time because she thought I could just cook her dinner every night from scratch after cooking for my family every night. IF she would eat what I made for my family, no big deal, but she's picky about what she eats, so she wanted me to cook our meal and then a whole other meal for her. After also cooking her breakfast and lunch. I don't have the energy for that. She also likes things that take a long time to prepare and a lot of baby-sitting the stove. I hate that type of cooking.

So at least she is eating the TV dinners, and I only have to make her breakfast and lunch and then dinner is easy. She also bought waffles, so I should only have to toast them and make a couple of fried eggs for her breakfast, which is easy. Lunch will probably be some kind of grilled or hot sandwich and soup, which is also easy. I'm just glad she finally realized just how hard it is on me, physically, to take care of her. Not to mention mentally, though she will never get that.

Okay, that turned into quite a rant, but sometimes you just need to vent.