Tuesday, June 30, 2015

SBT Update

About half way to the dentist's office they called to say the lab didn't have my appliances yet for me to try on, so we rescheduled for next week. Whatev.

So we went to social services instead. It was the next turnoff, so it was very good timing on the part of the dentist office.

We were there maybe 20 minutes. We got called up, explained our situation, my health status, and was told to call our caseworker (even though we were IN the office) because she only takes calls after 4:30 pm and it was about 4:31 pm.

She also told us that it takes 45 days maximum for health insurance to be processed. Once Medi-Cal is rejected, they automatically send it to Covered California (Obamacare), and it is backdated to the first of the month in which we applied, so in our case that would be June 1. Cool. I hope they really mean that because I really need insurance.

R called our caseworker while we were in the lobby, and she asked him to bring by a copy of his paycheck tomorrow and she could move us along in the process. So we will go by there on our way to SoCal. R has some business he needs to handle in the OC, we can pick up our mail at the post office one last time in OC (it expires tonight, but I think there is a short grace period), and I have requested a visit to the beach after boiling nearly to death the last two weeks in over 90 F heat. Ugh.

I have a bikini top and a pair of men's board shorts to cover my Shar Pei thighs--my abdomen looks fine, boobs, once wrassled into the bra top look fine, arms are a little iffy, but people can bite me if they don't like it. So I'm going to pack a beach bag--towel, Kindle Paperwhite, sun hat, sunscreen, flip flops. Wait, I'll be wearing the flip flops. Change of clothes. I'm going to swimming and gonna hang around the beach. Bitchin', man.

So pray for smooth sailing on the insurance front so I can get some of these health concerns kicked to the curb and back to my daily routine.

Also, getting new glasses, so maybe I can look for, get, and even be good at a job. Crazier things have been known to happen.

Screwed, Blued, and Tattooed

I've been trying to get help with the anemia I just found out about a week ago Monday, and finally decided to go to the ER today even though I felt in my gut that they wouldn't do anything. I posted on a few of my DS groups, and nearly unanimously found that most people had bad experiences in the ER with getting help for anemia and an iron infusion. I think I'm just going to skip the patronization and degradation of that experience, especially since all three hospitals in the area have some of the worst Yelp reviews I've ever seen. Wowza.

Today I woke up very nauseous. I leaned over the sink for a while, but nothing happened, so I drank some water and that helped.

Every time I stand up, I just about pass out--I get that snowy TV fuzzy look, that's all I can see, then it fades away as I'm wobbling all over the place with my arms out.

Last week, a toenail fell out. I thought that was weird. Turns out, it can be iron deficiency anemia-related. Huh.

I feel rundown. Exhausted. My weight keeps going down. I was starving and ate all day long yesterday, nearly all protein, and I still lost a pound. Huh.

I was putting together a list of things to tell the hospital so I could either just hand it to them or have my husband go over everything with them. Here is part of what I had along with my prescriptions, supplements, and all three doctors info:

DX:  ANEMIA

SYMPTOMS:
·         Shortness of breath
·         Fatigue
·         Dizziness upon standing—very close to blacking out
·         Toenails falling out
·         Malabsportion from Duodenal Switch with Biliopancreatic Diversion March 2014 (weight loss surgery NOT the RnY, i.e. gastric bypass—totally different surgery) with Dr. XYZ of XXX, CA (see attached diagram)

LAB RESULTS FROM 6/19/15 (See copy)
·         Hemoglobin:  11.7
·         RBC:  3.81
·         Ferritin, Serum: 11
·         Iron Saturation:  14

ADDITIONAL INFORMATION
o   I was taking two ProFerrin Polypeptide Heme Iron tablets (Each tablet contains 10.5
mg of elemental iron as Heme Iron Polypeptide.)  per day per Dr.’s instructions for over a year. Iron is still extremely low.

o   Iron infusion indicated

***

I don't think I'm going to go to the ER. I think it will just be a waste of time. I have to go to the dentist at 3:30 to get my final fitting for my partial and full uppers. If I don't go today, I can't see him again until next Tuesday as he is only in our area on Mon and Tues. I can do that. Walk to car. Let husband drive. Walk from car to lobby, from lobby to exam room, and back. I can do it.

I also skipped the oncology appointment today. What for? It's a meet n' greet appointment, I won't be able to see him again until we have our new insurance through the ACA, and who knows how long that will take--last summer took four months. We had employer-sponsored insurance by the time it ground its way through the system. We went to social services this time to get human beings to walk us through it. First we had to apply and wait to get rejected for Medi-Cal. We did that last week, haven't heard anything back, and so we're going to stop by there tomrrow on the way to pick up my husband's last paycheck. Or maybe he'll do it while I'm at the dentist. I forget. Whatever. They're getting a visit from us.

I'm depressed. Everything is going to hell. I can't make it better. I don't like it when I can't control things or make them better or go the way I want/need. I find it extremely frustrating. Who wouldn't? Jeez Louise.

I'm going to find some clothes to wear to the dentist. I think a dress because it's damn hot. This requires putting on a bra. Oh joy.

Sunday, June 28, 2015

LABS

Since my insurance started last November 1, I've been diligent about getting my quarterly labs. As a DS patient, we have to take high levels of supplements due to the malabsorption issue that makes the DS so effective.

I have been diligent about taking all my supplements, daily, adjusting when necessary, and rarely missing, usually when I went out expecting to be home earlier and didn't take any with me. So now I make sure to always have them in my purse as a backup, whether I need them or not. One day I will need them.

My recent set of labs doesn't look that great. My iron has tanked. It is extremely low despite taking two daily Proferrin Polypeptide Heme Iron recommended by my DS surgeon. They didn't help. This explains why I've been feeling rundown for the last four months or so. Ferritin and Iron are way below normal. I tried in the waning weeks of our crappy HMO (it expires on July 1) to get an iron infusion, the only solution for this type of DS-caused anemia. I enlisted the help of my surgeon, my PCP, and who is also a hematologist, and even my ocular melanoma specialist. They all basically said, "Huh. Too bad."  &^%$

So I pulled up my last two quarterly labs and WTF? No iron or ferritin tests were done! I emailed copies to my surgeon, and he said everything "looked great." That's because all the tests I requested weren't getting done. (How did it get done this time? Uh...magic? I take the fifth.) So there was no trend to follow. Dammit. In addition to HC professionals, I also dropped the ball. I did my best, but it fell short of the mark. I accept that.

We went to social services (well, my husband did), a week ago to apply for insurance coverage. We have to start with Medi-Cal, which we're not eligible for this month because my husband is getting paid one last teacher paycheck on the 1st (and thank dog), so we have to be rejected from that first so we can move on to the next thing. I'm not sure what the next thing is, but we are going to meet with a caseworker, hopefully this week. Maybe we'll go over just to say "HI" and get in their faces.

So to recap, I need the following medical stuff:

1. Iron infusion
2. Diagnostic D&C to biopsy ovarian cyst, uterine polyp, uterine fibroids, and endometrium (too thick)
3. I need an ocular oncologist (requested one thru my PCP in May. She dropped the ball as usual.)

I tried VERY HARD to make all these things happen by July 1. I visited doctors' offices' in person; I burned up the phone to doctor offices, my HMO, and my "group", i.e., the gatekeepers. I cried. I got hysterical. I bullied. I threatened. I begged and pleaded. Nothing. It sure wasn't from a lack of effort that none of these events took place. I don't know what else I could have done other than just do it myself. Gah.

And still, I would trade it all to make the diabetes go away. I would.

But I'll tell you what? No more HMOs. I mean it. I'll go without before I accept another HMO. I hadn't had one in over ten years, and they are even worse now than they were in 2005. Un. Be. Lievable. Never again.

In the meantime, I sold some stuff on eBay so we're going to do our Sunday ritual of a newspaper and eggs at Denny's. Also, free WiFi and free A/C. It's been hotter than hell here and it is making me crazy. We can't afford to run the A/C. This house has very high ceilings--it would cost a mint to actually cool it down.

Right now, I'm just taking it one day at time. That's all you can do.

Saturday, June 27, 2015

Unbelievable.

Holy crap!

I really didn't think I would make it to the 170's. Well, I was shocked when I got below 300 for the first time in ten years. LOL

I'm four pounds from my personal goal of 175--what I weighed in high school after I lost 35 pounds on Weight Watchers the summer before my senior year of high school.

I'm also a smaller size now--14--than I was in high school--16--because of obesity-related increased bone density.

Well done, Jules. Well done.

Thursday, June 25, 2015

Quick and Dirty Update

I am finishing a project that I stepped away from for a few days, so I can't write a lot, but this is what it boils down to:
As I suspected: wait and watch, re-scan chest in three months. 90% of ocular melanomas metastasize to the liver first; my liver is fine. Unfortunately a misunderstanding led to a bunch of unnecessary, painful tests $%&# but it's done.  (The doctor actually apologized to me for the unnecessary tests. Very professional and kind.) I can move on until September's appointment. Exhale.
PS:
I need some work! $$$ If you know of anyone in need of editorial services, please send them my way. Leave a comment or email me for my business email: allthatsparkles.jules at G mail. Thank you!

Tuesday, June 23, 2015

Bad News on the Health Front

While my eyes were focused on my lady bits and possible cancer there, my view rotated off my Ocular Melanoma follow-ups. I got my CT scans back. There's a tiny nodule on my left lung. Could be something, could be nothing. Trying to get in to USC to see the OM specialist by Wednesday before insurance expires on July 1. Freaking out and crying over with, now in problem solving mode. Keep me in your thoughts. 

I'm too tired to blog the whole thing, but suffice it to say my PCP is an idiot, needs to retire, and if we weren't already losing our insurance, she would be fired. #^%$

Saturday, June 20, 2015

Conversations With Myself.

I talk to myself, sometimes out loud, mostly in my head, about food choices. As a formerly sick obese person, I’ve spent the last 15 months changing and adjusting my relationship to food. It’s been hard. Mostly I don’t give in to those obsessive thoughts screaming in my head, “eat it, eat it, eat it, you’ll feel SO much better”. Of course, I have collapsed like a house of cards more than once in the last year+, and I pay the price with gas, bloating, pain, and diarrhea. Like my own one-person Schick Center (if you don’t get the reference, Google it. It’s basically Pavlovian.)


This was driven home to me yesterday when I was at the dollar store. I had a therapy appointment, then my husband needed to go over to a government office to see about us getting some health insurance now that he’s been laid off and our insurance ends July 1, so I asked him to drop me off at a strip mall that had a Panda Express, Dollar Store, Wal-Mart, and a frozen yogurt place.

I had hot and sour soup—gawd I love that. I love vinegary stuff even more now than pre-DS. Olives, pickles, peppers, beets, sauerkraut (what! I wouldn’t touch this before! LOL) you name it. If it’s in vinegar, I’m having it.

I then read for a bit (Bourdain’s KITCHEN CONFIDENTIAL), then I ate the spare ribs I’d ordered—super good, so tender—and boxed up the green bean chicken for later. It’s still in the fridge. Then I walked, in 105 degree heat, in a sundress, sunscreen firmly in place, over to the dollar store to get some orange oil spray cleaner. It kills and repels ants and is not dangerous to pets like pesticides.

We have been invaded with ants. Lots and lots and lots of ants. Evidently they don’t like the heat either. Yuck. But the orange spray keeps them off the counters, and when I looked for it at Tarjay last week, they didn’t have any.

After the dollar store I walked over to Malwart, still 105 F and blazing under a relentless sun (and it felt good to me, skinny me), and cashed a check. My husband caught up with me there and brought good news about the insurance—we are on the right path.

So since our budget has been tightened to the extreme since 1. My FIL died (he allowed us use of a credit card within reason) and 2. My husband got laid off, so I was only going to buy the orange oil spray ($1.00) and get out. Then I saw they had a freezer case. I thought I’d peruse it looking for high protein dairy foods like cottage cheese or heavy whipping cream. You never know what they’re going to have there.

And as I stood there, peering in, my reflection squinting back at me, I saw a box of frozen chocolate-covered eclairs. I LOVE those. Then I stopped and asked myself this simple question:  Why?  Why do you need to buy these probably less than stellar, low quality, frozen desserts? Anthony Bourdain would eat these. But wait, you idiot, Anthony Bourdain has a different metabolism than you, never struggled with obesity. probably  has a full switch in his brain unlike yourself, exercises more probably. You are NOT Anthony Bourdain. *rolleyes* And besides...what are you going to do with them? Walk around outside until they defrost and then eat them while squatting on the curb? Why do you want them? 

And the answer came:  I’ll feel better. For that one moment, that brief slice of time that the éclair is in my mouth being chewed and enjoyed, all will be right with the world. But after? After comes the guilt and the shame and maybe diarrhea and gas and weight up a pound. Oh fuck that.

And then I asked myself why I needed to feel better?  Well, I’m stressed. Trying to get a cancer or not diagnosis before insurance runs out both metastatic eye and gynecological; husband out of work and under my feet (O.M.G.); death of FIL and access to emergency funds if needed; drop in income; mother with rapidly encroaching dementia; going blind; my body looks like an elephant, covered with saggy skin.

So yeah, no stress.

I was stressed so therefore I wanted food. I was full of Chinese food and I couldn’t fit in even one éclair, even if I wanted to.

But I wanted something immediate that would make me feel better.

I walked away because I knew it wasn’t really going to help, that I’d actually feel worse after I’d eaten it. I also reminded myself that I’ve eaten enough eclairs for a lifetime and that’s how I ended up over 300 lbs with Type II diabetes. Uh, yeah.

So not only can I make better choices now, I can analyze what I’m doing so I can adjust for future food decisions.

I’m not perfect, sometimes I may eat the éclair or whatever, but mostly I don’t. And I truly know why I want it and why I walk away.

My life depends on it.

It was a very intimate moment of clarity. Instead of telling myself, “You don’t eat that anymore. Bad. Run away.”, and which has worked in the past, now I knew why I both wanted a treat and why I could walk away.

It’s kind of liberating.

I still have treats, I just make them low carb. I may be personally keeping the almond flour market alive just by myself. Sometimes I have ice cream, full fat and sugar, and there are no side-effects including weight gain. Can I do it every day? No. But once or twice a week? No worries. And in this weather, I’m often unsure if I want to eat or wear the ice cream *sweating*.


I’m glad I’m still able to learn new lessons. Maybe there’s hope for me after all.

Friday, June 5, 2015

Eatin' Crap (aka Carbs)

Yesterday I decided to take "the day off."  I had some bad test results come back from the gynecologist requiring more tests--mostly for cancer. Yeah.--and I just felt all out of cope. I didn't get dressed, I didn't shower, I stayed in my lounge pants and my bathrobe. I didn't even wash my face or comb my hair.

I spent the day watching Falling Skies, season III on Amazon Prime. I tethered to my phone to get online and essentially used 75% of my data on my plan to do it. Fortunately, it resets on the 7th, so I only need to be cautious for two more days.

The day started out auspiciously enough with me shitting my pants while still in bed. Awesome. I had gas. I'd had it the night before and all night. The only thing I can blame it on is the Malibu Chicken (breaded and deep fried) I'd had with half a steak at Sizzler after my GYN appointment. I was lying there, sort of awake, when I felt the need to pass gas. I've gotten pretty good at knowing the difference between a fart and a shart, and in this case, I felt I was good to go. So I did. I farted long and loud. Then the shit came. Fortunately, I wear a giant, extra long, Stayfree overnight pad every day and night because I can laugh or cough until I pee, have for years, and now the sharting problem. (It's only happened three times in a year. But there's never a good time to have that happen.)

I got up, went to the bathroom, realized a shower was in order, and turned on the water to heat up as I sat on the toilet. I threw my undies in the tub to rinse off before putting them in the hamper.

The water never got very hot. We were out of propane, which heats our water and runs our stove. It lasts, generally, about six weeks. I don't remember the last time we got it filled--which requires detaching the tank and taking it into town (my husband handles it) to get it filled. It holds $25 gallons.

Yesterday was my husband's last day of work and then he had to be at the graduation ceremony at 6:30 pm. I texted him about the propane. He texted back, stressed, but after he filed his grades and before the ceremony he zipped home, got it filled, and zipped back. He then went up to NorCal to watch some of his former students graduate from high school (he had them for 8th or 9th grade). He cares about those kids, so I don't begrudge him the trip or time, but the timing regarding my health issues is not the best.

So I shit my pants, got cleaned up in kind-of hot water, parked myself on the couch with coffee and a couple of almond brekkie biscuits, and started surfing the net via my cell phone. I then ended up bingeing on Falling Skies; I watched all ten episodes yesterday. So good. Took my mind off my problems.

I did however eat some crap. First, I had diarrhea all day, from the Malibu chicken, I'm guessing. I don't know. But here's what I ate yesterday, in between trips to the toilet:


  • Two homemade almond breakfast biscuits
  • Trader Joe's vanilla almond crunch cereal with half and half
  • Kettle Corn, microwave kind, a full bag
  • Two poached eggs with grated cheese, Kerrygold butter, and saltines (8?)
  • 4 ounces sharp cheddar
  • 1 leftover carnitas taco with guacamole, sour cream, and refried beans
  • bowl of chocolate peanut butter cup Dreyer's Grand ice cream (4 scoops)


The result? A normal bowel movement this morning, no gas, no gurgling, no diarrhea, and down four pounds. Go figure.

Today I felt like I had my shit more together, did the sink full of dishes that had piled up, took out the trash, changed the cats water and litter, fed the birds (they eat a birdfeeder full a day. I won't add more than that or I'd have every bird in the county in the yard); washed and moisturized my face; changed, fixed hair, put on jewelry. Went to town and had a blood draw for the CA125 test for ovarian cancer; got the mail; mailed some semi-precious beads and a big copper splatter art work thingie to my mother-in-law. She'd bought it at the gem show my dad was at. It was about $160- worth of copper and beads. I sent it priority mail, insured, signature required.

I then went to Stater Brothers to take advantage of a "transfer a new prescription get a $25- gift card" offer (rib eyes are on sale. Heh.). Turns out, the prescription the GYN wrote for me to deal with PMS dysphoria, and which I CANNOT take with Prozac, is...fluoxetine, brand name Prozac. WTF?? I told the pharmacist I was speechless. I was. And because of that, as one of their advertised specials, it wasn't eligible for the gift card. But I had another prescription out in the car I was going to take to Target. I brought it in to Stater's and it wasn't on the special list. Hooray! And while I was waiting, I saw a coupon in their flyer for $30- to transfer a prescription, so an even better deal. I'm going to go pick it up here shortly.

Then I came to Target to take advantage of 20% off of cast iron skillets. Mine had disappeared in one of our many moves. I got a few other things. Ahem.

I was going to watch episode I, of season IV of Falling Skies, but it's getting late and I want to be home by dark to put the kitties in the house.

Tomorrow I have to go down to OC to help my mom with some problems she's having. I don't think I'm going to tell her about the cancer concerns. She's got enough to worry about on her own and she'll probably forget anyway. Her memory is getting exponentially worse every month. Sigh.

Today I had two poached eggs with butter cheese and 4 saltines; two shrimp tostaditos at Rubio's with black beans. I'm hungry, but I think I'll make dinner for myself. I was going to go to a movie, but I don't want to be out that late by myself. The attention I get now as a thin person makes me uncomfortable and has been scary a couple of times. Until I figure out what I want to do about this (pepper spray?) I'm just going to mitigate my risk for now.

Well, gotta run. The sun waits for no one.