Dealing with Isolation That Isn’t By Choice

For some folks, this is the first time they’ve had their lives altered by forces outside of their control.  For others, nobody has ever been kind enough to tell them ‘no’ before. While it’s not physically painful, and having to be in one’s own home is the biggest loss of mobility, it can be a source of anxiety and depression.  It seems like it will never end.  For some of us, this is our normal. Medical disability has had me housebound except for MD appointments  (and earlier monthly grocery store trips, and maybe lunch with my dad once or twice a year) since 2004. I’m an RN. I’d like nothing better to be working.  But my body broke.  That’s just backstory stuff.  Here’s my point- you can get through this.  The ambiguity of when “normal” returns is unsettling, but there are things you can do to cope.  I won’t say ‘adapt’, because most of you will go back to being able to freely come and go as you wish.  ‘Adapt’ implies permanent.  ‘Cope’ deals with a temporary situation, whether it’s for a few weeks, or months.

Here are some ideas. 

Read “The Diary of Anne Frank” (again, if you’ve already read it).  It offers perspective, and also has simple things to do to cope with having to “hide away”.  It’s also a testament to resilience- and that nobody now will go to the gas chamber. Just read it.

Do your own journaling. It doesn’t have to be fancy or structured. Just write- words, sentences, phrases, doodle, or cohesive entries. It’s all good. And it will be your own history of what is going on in YOUR life. Let the despair have a voice. Let the funny things be memorialized. There is no right or wrong way to do it- just do what works for you.

Make a Coronavirus dart board. If you don’t have darts, do the old “pin the tail on the donkey” thing with push pins, safety pins, tiny nails, or whatever.  Draw your weapon of choice, put the pin in it, and go after that ugly virus. Ideas for ‘waapons’- soap, hand sanitizer, mask, vaccine, testing, sense of humor (viruses are so serious), or whatever you want to use to kill the virus.

Plan your “exit party”.  Make a list of the folks you’ve missed seeing the most, and plan a lunch, snacks and a movie, or whatever you like to do.  Get detailed. Know your budget- and aim for things that won’t break an already stressed ‘bank’.

Research online (use good sources- nothing with the credit cards they accept at the bottom of the article, or researchers you can’t find if you Google them).  Learn about the immune system (the skin is the first line of defense). Learn about medical testing procedures. Learn about anything that will help you feel less vulnerable to the unknown.  There IS a lot we don’t know with COVID-19- but you can get info on other types of disorders/diseases. Keep your brain active.

Consider the big picture. There are approx 330 million people in the US.  For the sake of simplicity, I’m going to use 1,350,000 positive cases of COVID-19 in the US for today.  That’s an overall infection rate (that we know of) of %0.004.  That’s LOW.  It will rise, and each person who gets sick is not insignificant, but statistically speaking, the rate is miniscule.  Of those who get it, %0.05 die, Yes- EVERY death is a horrible loss. But you are SO much more likely to recover. 

LISTEN to the officials who are recommending specific measures to lessen the number of additional infections. If you are too special to wear a mask or follow the guidelines, then you could kill someone just by being stubborn and selfish. Don’t let that be what you’re known for.  Nobody is asking for a kidney, or the child you like the most. Wear a mask. Stay 6 feet between other people.  Don’t be stupid.  Everybody wants the country to go back to normal.  CLUE: that won’t happen overnight. The more people who get this virus, the longer there are restrictions on  restaurants, theaters, malls, salons, stores, sports games, etc.

You are not too young to get this.  Babies and very young kids have gotten the virus and died. Do you want to live, or try to convince people how you can’t get the virus?  At your funeral, they’ll just think you were a fool who wasted your life.

Be smart, and you’re going to get through this, and resume your life. Nobody knows exactly how long all of the ‘going back to normal’ could take- could be years for some businesses. But be thankful for what you have- not what you don’t.   Learn about how the US has come through nationwide crises in the past… we were fortunate.  And the folks who navigated WWII are considered “The Greatest Generation” for very good reason.
They bucked up and did what needed doing.

-This is from The History Channel
https://www.history.com/topics/world-war-ii/us-home-front-during-world-war-ii

And, get help if you are feeling so overwhelmed that you’re often in a very dark place.
-The NAMI HelpLine can be reached Monday through Friday, 10 am–6 pm, ET.
1-800-950-NAMI (6264) or info@nami.org

Free 24/7 support at your fingertips  US and Canada: text 741741.   UK: text 85258 | Ireland: text 086 1800 280

National Suicide Prevention Lifeline    1-800-273-8255

* * * * * * * * * * * * * * * * * * * * * * * * * * * * * *
“The human capacity for burden is like bamboo- far more flexible than you’d ever believe at first glance.”
― Jodi Picoult, My Sister’s Keeper

“It’s your reaction to adversity, not adversity itself that determines how your life’s story will develop.”
― Dieter F. Uchtdorf

“On the other side of a storm is the strength that comes from having navigated through it. Raise your sail and begin.”
― Gregory S. Williams

After The Pandemic, Get Ready for Emergencies

So many folks were caught in situations where they didn’t have a supply of emergency food, medications, baby items, first aid supplies, etc.   Now, it’s very hard to get some items.   I’m not a homesteading, off-the-grid prepper, but I do have back-up supplies on hand.  These items are basic for storm prep, and general having back-up if the unexpected happens (illness, unemployment, etc).   Here are some basics for how to start to stock up without breaking the bank.

Make a list of common household products you use- cleaners, paper goods, laundry items, dishwashing soap, and a bin to store them in.   Try to spend %5-20 of your grocery/supply budget on stocking up (for all goods, including food). Prioritize water (including purifying), food, cleaning supplies, toiletries, medications and first aid items.

Make a list of shelf-stable foods that you like. There’s no point in getting some chalky protein bar if eating it is like chewing on a coconut mat.  Canned fruits, veggies, tuna, soups, boxed milk, rice, pasta, beans, grains, baking goods, sauces, condiments, etc.  Keep the dates visible, and use the ones that have less than 3 months left on them- purchasing replacements ASAP.

WATER:  For folks with wells, or in the event of a flood that contaminates drinking water, you will need to stock up on water.  One to two gallons per person per day, and 1/2 gallon for dogs/cats/pets.  There are many water storage products out there, as well as purification products for water collected from outside sources, or water that has been stored for a while. There are also bathtub liners for water storage, but those should be filled at the last possible minute (being told to stay at home might be a good time).  If the water reclamation plant near you is compromised, your tap water won’t be good.  If you have a well, and the electricity goes out, you won’t have a working well pump.

Toiletries- baby wipes, dry shampoo, no-rinse products, towels, washcloths.  Also, if your toilet needs electricity to flush (well/septic system), you might consider a commode chair used by folks with limited mobility.  Get trash bags that fit the bucket, and put cat litter in the bag.  Use the bag for a few times, adding more cat litter.  You are just trying to mask the smell- so no need to dump a whole bag of litter in the bag- the bag will break.

For kids- make sure you have age/size appropriate items, being sure to rotate formula, and update diaper sizes.  Nothing will go to waste if you rotate and use products before they either don’t fit anymore, or are no longer used.

For longterm storage food, I like the freeze dried products- and Emergency Essentials is as good as any.  They have decent prices for survival food- and the food is tasty.  The fruits and veggies, and even some of the meats are tasty out of the can (conserve water).  They have a huge assortment of products.

https://beprepared.com

Also, a crank or solar power radio could be your only communication.  There are a lot of potential threats, but it’s easy to have a basic set up for an extended period of time without completely breaking the bank.  Get what you like, and store it properly (dry, cool, and not in garages or attics.

Be sure to have medications and first aid supplies, including things to stop bleeding (there are dressings that do that), strong bandages, a splint or two, antibiotic ointment, soap, and water for wound care.

Entertainment.  Be sure to have playing cards, board games, puzzle books, toys for kids, hobby supplies, BOOKS (including on survival),  etc.  You need distraction.  You might even keep a journal of how you experience drastic disruptions to normal life.

Don’t announce what you have. In a situation where civil unrest becomes an issue, your stash could jeopardize your life.  I also keep small bottles of booze to use for barter, and a modest amount of cash on hand.

Be ready, not left wondering where you will get food and supplies.

Time Buffers… It Does Not Heal All Wounds

Four years ago this morning, my dad called me at around 8:00 a.m.  He knew I generally slept until noon (up all night), so I knew it was something different and serious before I answered the phone.  He told me he couldn’t walk right, and asked if I could come to the house and see what I thought (have been an RN since 1985, though disabled for the last 15 years- I keep up with medical stuff by keeping myself alive).  I asked him if I had time for a shower, anticipating we’d be going to the ER, and he said yes, but don’t take too long. Dad had been having back issues and some weird symptoms on and off since the November prior to March 3, 2016.  He needed a better work-up, and at this point, the ER was our best bet.

I took my shower and packed my meds/insulin figuring that I’d be away from home for hours.  Then I drove to the house.  I wasn’t really prepared for what I saw.  Dad stood up when I came down the hallway after letting myself in with the garage door opener I kept for checking his house when he was on vacations.  Dad was standing next to the bed, with ‘balance’ that looked like someone trying to stand on an inner tube in a pool.   He had no clue where his body was in space (proprioception problem).  I told him to sit down, and I’d get what he needed.  First order of business was breakfast, even though I suggested he wait because of any lab tests  that might be done, but if I didn’t feed him, he wasn’t going to the hospital.  OK… food first.  I don’t even remember what I got for him. I do know it was in a bowl, and doubt I made oatmeal, so likely cold cereal.

His lady friend (not going into detail about her, as she was a self-serving “care taker” who was handy on occasion) came over and got some of his belongings together to take in case he was admitted.  I wasn’t going to take him home in his condition, so started getting my speech ready for that conversation with the ER doc.   I got his electric shaver and warm washcloth, as well as his toothbrush- he wasn’t going anywhere ungroomed.  Then I told him I was calling 911, since I knew there was no way to get him in and out of the car safely with what I saw of his balance issues.   He didn’t argue.  I knew he was scared.

The ambulance took some time to get to the house, as his address was in the county (by one block), and the station responsible for sending emergency help was several miles away.  They came in and got him loaded up, and I told them in no uncertain terms that we were to go to a specific hospital that wasn’t the closest.  His vital signs were fine, and he was not in respiratory, cardiac, or any other distress physically.  They agreed.  I followed in my car (and lady friend took her car).

I told the folks at the ER that I needed to be back with dad, since he tended to downplay things to strangers.  They needed to know about the months of erratic symptoms.  They also needed to know that dad would not do anything medically unless he could ask ME if it was legit.  He used to say he was getting a return on his investment in sending me to nursing school.  They let me back as soon as they had him gowned up.  He was terrified.

As with any ER, it takes time to sort through everything and get testing done.  We were there for at least 9 hours, in which time he had several tests done, including an MRI that almost didn’t happen because of dad’s claustrophobia.  He almost changed his wishes for a traditional casket burial because of claustrophobia.  They sedated him (a Benadryl made him loopy for a couple of days, so the stuff they gave him IV really made him blotto, which is what he needed so the MRI could happen).  They found some strange lesions on his spine- not what we were expecting.  There was talk of sending him home (alone), and I pitched a semi-dignified fit.  They said that the ER was for finding problems – and not necessarily to admit people. I told them of his living situation, my disability in not being able to care for him adequately when he couldn’t transfer safely, and the other safety issues in sending him home.  They did admit him, and he never saw his home of 40 years again.

I’ll never forget that day, or the 19 hours on April 3-4, 2016, just a month after he was admitted, and going a rehab facility that repeatedly blew off his complaints of abdominal pain.  On April 4, 2016,  he died after a diverticula that hadn’t been diagnosed ruptured and caused catastrophic infections in his abdomen, extending into his bladder and  filling it with gas.  He was a great dad- and I’m so fortunate to have ‘landed’ with him when I was adopted at 10 days old.  He is still missed daily, though it’s easier to remember the good and goofy stuff.  My mom died in 2003, and I couldn’t anticipate the devastation of losing my last parent, and the one who was constantly looking out for me and my best interests starting from that first day in 1963. I didn’t grow  up with siblings.  My mom did things in her own way to show her love, but dad was more open about it. We had a great relationship when I became an adult, and I could tell him anything.  When I was younger, I didn’t appreciate his work stress, or the ways he made sure that all vacations included things just for me along with general sight-seeing.  He’d go out of his way to make sure I got something special out of each trip.

I now live in his house (was also my home for 9 years as a teenager through nursing school), and I’m so thankful.  I have him, and my mom, in every room of this house, whether it’s some trinket or photo, or memories of things that we did here.  I couldn’t live anywhere else.  It’s home.  It’s my family in a house.  It’s what I have left.

When Death Steals Justice From a Murdered Baby’s Mom

This week, the mother of murdered 4-month old Paul Villareal died after a very brief, and unexpected illness.  She was waiting for the trials to start in early 2020 in five murders, including that of little Paul.  She’d been waiting since 1981 for justice to be within grasp.  She won’t see that day.  Her son Paul’s killer will finally be held to account for what she did to Paul, his mother, and entire family.

Her family is now trying to find the way to pay for the burial their mom wanted, and Paul’s youngest sister is doing her best to make sure that happens, but she needs help. While she didn’t want to ask for help, doing a GoFundMe was the most likely way to get the funding as soon as possible, so she can bury her mom, who did not want to be cremated.  I’m now asking for help as well for this family.  They’ve been through so much.

No matter how much or little folks can help, it all matters, and I know personally that the family is extremely grateful and humbled for any help.  I’m in regular online contact with Paul’s sister. This is legit.

 Whether or not you can donate, please pass the link along : 

https://www.gofundme.com/f/mom039s-cemetery-expenses

For those who are unfamiliar with the hell Jones put dozens of families through in the early 1980s, I’m including an article by the author of a book by the same name, “The Death Shift”, which is considered by the families to be the most accurate book on the hell they went through. They were interviewed for the book.

https://www.texasmonthly.com/articles/the-death-shift-2/

Jones had been due to be released in March of 2018 because of the “mandatory release” law, that was amended in late 1987, and later excluded violent offenders.

By Elizabeth Zavala of MySA— after the death of Chelsea McClellan’s mom, who was fighting so hard for the additional indictments, and a huge support to the families.

https://www.expressnews.com/news/local/article/Moms-keep-up-fight-despite-loss-of-ally-14423719.php

More background on Jones and the alleged murders of 46 babies/toddlers:
https://abcnews.go.com/US/nurse-suspected-killing-46-kids-prison/story?id=19852141

https://www.tpr.org/post/evidence-destroyed-hospital-cover-needed-genene-jones-prosecution

Articles of Impeachment

Tuesday, December 10, 2019

I just watched the news about the specific articles of impeachment against Donald Trump. I’m not reacting the way I anticipated. It is sad, and nothing to be gleeful about, no matter how much this president has abused his office, and obstructed the truth.  But I cried.  This is something that had to be done. I think most folks realize he will not be removed from office, because of the partisan tone to DC and all things political.  But for only the 3rd time in our country’s history, a sitting president has had articles of impeachment issued against him.  It was inevitable if he acted AS president like he did as a campaigner or candidate.

I have been a lifelong GOP voter for the most part (never party over principles), but changed my affiliation to “Independent” before the 2016 election when Trump was named the candidate.  From the relative little I knew then, I couldn’t support a candidate who fits the diagnostic criteria for Narcissistic Personality Disorder- with some intense Borderline ‘episodes’ in his use of chaos for personal amusement. He also loves someone until  they disagree with him- that’s the sign of a very insecure person.  His ‘pussy grabbing’ comments will never be defensible to me. Sexual assault is very serious, and he treats women like a vending machine for his ego- without their consent. (and there have been some who consented, and got a big payday to buy their silence).

The people I grew up with are/were conservative evangelicals.  When growing up, hate was not something that was preached, encouraged, or sanctioned.  Now, I don’t go to that church, because my beliefs in treating everyone with compassion, helping those in need, and a non-judgmental view on those who fit into the right wing rhetoric- LGBTQ and abortion- don’t mesh with their beliefs.  I don’t understand what makes LGBTQ folks ‘tick’- but I’ve known and worked with enough, as well as having LGBTQ family members, that I can only respond in love and kindness as I found every last one of them to be great co-workers, friends, and family.  After being raped and ending up pregnant, I did think about abortion. I couldn’t go through with it, but I understand why someone would.  I miscarried, which was about all my wrecked brain could handle during that time between the 6 hour rape and the trial of the rapist. I don’t understand how Trump has any supporters who aren’t neo-Nazis.  I know they exist- I just don’t understand them at all.

Things I can’t support- 
– pathological lying
https://www.washingtonpost.com/politics/2019/10/14/president-trump-has-made-false-or-misleading-claims-over-days/

– hiding behind a lack of understanding of the Constitution (“I can do anything I want”)
https://www.politico.com/magazine/story/2017/10/08/donald-trump-government-215691

– basing ALL decisions about staff/other people on how they back his fragile ego (too many links to share- you can Google)

– mocking the disabled

– xenophobia and slandering entire groups of people based on race or religion
https://en.wikipedia.org/wiki/Racial_views_of_Donald_Trump

– separating children from their families
https://time.com/5678313/trump-administration-family-separation-lawsuits/

– associating AND DEFENDING dictators and communist leaders
https://www.theatlantic.com/international/archive/2018/03/trump-xi-jinping-dictators/554810/

– upending trade around the world
https://www.reuters.com/article/us-imf-worldbank-trade/fallout-from-trumps-trade-wars-felt-by-economies-around-the-world-idUSKBN1WY0PZ

– using the office for personal gain
https://www.opensecrets.org/trump/inauguration-donors

– withholding aid from a vulnerable young democracy- and by virtue of being the president of the United States (a much higher rank) to manipulate a newly elected president, making demands before Congressional Bi-Partisan funding would be released…until he got caught.
https://www.usnews.com/news/politics/articles/2019-10-04/officials-zelenskiy-feared-trump-was-manipulating-ukraine-before-phone-call

– the erosion of any integrity of the office of the POTUS and the USA
https://www.commondreams.org/views/2019/07/01/under-trump-americas-global-standing-record-low

– alienating other world leaders with nasty Tweets (Google to pick your favorite in the list of millions)

– the golf trips…
https://www.forbes.com/sites/chuckjones/2019/07/10/trumps-golf-trips-could-cost-taxpayers-over-340-million/#35191a3f28aa

– his treatment and views on women
https://theweek.com/articles/655770/61-things-donald-trump-said-about-women

How did we get here?  How did so many people (3 million less than those who voted for his opponent) fall for his BS?  How is it not glaringly obvious that this is the political equivalent of a mob boss?

How do we recover?

 

 

When Multiple Local Doctors Finally Beat You Down…

This has been a year I hope to forget.  I’ve had endless appointments and testing done for GI issues (starting with a large gallstone that nobody would remove without repeating tests that had been done two years prior with no change in those symptoms), kidney function abnormalities, etc.   I’m done. They win.   Even though the new primary care doc (different health system) is a far cry (in a good way) from the “healthcare providers” (use term very, very loosely)  I’ve seen this year, I am no longer interested in testing, treatment, or being BOTHERED by sitting in waiting rooms and arranging my limited life around waiting rooms.  My newish primary doc is a decent sort.  But he wanted me to see a GI doc before referring me to a surgeon.  Well, I don’t want a surgeon now.  I don’t want ANYTHING from medical people in this town.  I can use Urgent Care for simple stuff.  That (and any trip away from home) requires getting in and out of the car twice for one appointment/stop.  THAT causes a lot of pain that generally results in at least a day or two in bed to help the muscle and joint/disc pain.

Sent to current doc after messaging about still seeing GI doc AGAIN, when symptoms have improved “enough”:

“I’m SO, so sorry to be a pain in the ass. Really, I am. I just don’t want to be bothered with medical anything other than the bare minimum to stay alive within the ‘cage’ of my house. Appointments are not worth it to me. I’m buying my own Blood Sugar strips/CPAP junk. My labs were better. That should buy time. Plus, appointments are painful with the DJD and DDD. A single there/back = 1-2 days in bed.

I’m just DONE with folks meaning well, but not hearing that I DON’T CARE anymore about finding out about any new problems. I won’t go to the ER. I don’t care about the gallstone. I don’t care about anything but basic maintenance. I’m trying to wean off of all meds I can. I’d like to spend time not thinking about appts, tests, etc. The nausea is better. I’ve had mild nausea intermittently for years, and that is livable. Belching yesterday’s lunch at breakfast the next day tells me that my gastric motility is dull- don’t need a test for that, and don’t want meds for it. The stomach pain is much better since NOT having to deal with the other health care systems.

If I’m not interested, why should anybody else put more energy into something that doesn’t effect them?

My goals: 1) not wasting what little is left of quality of life in one waiting room after another. Nobody will fix the things that effect mobility (clot history)-and my shoulders are not strong enough for rehab anyway, and the rest of it is just not fixable. After the hell with the other healthcare systems in town not giving a damn about what I want out of things, I’m just done looking for anything else that would need anything done about it.  If that means palliative now, so be it. I can’t leave the house in the late spring/summer/early fall during the daylight (heat) anymore. If I have to have anything done, it means hiring “help” and I don’t “do” babysitters. And 2), not contacting your office unless there’s something that can be treated VERY, VERY simply (UTI, URI).

Had I seen you first this year, I doubt I’d be where I am now, but my PCP of 11 years was still here- and she was the ONLY reason I stayed with freaky OSF for so long. I don’t trust much right now (nothing related to you). I hope that changes. I’ve had 2 GB ultrasounds, the endoscopy, and abd/pelvic CT. If there’s something going on that isn’t on any of those, I won’t want treatment anyway. SO why waste anybody’s time?   I’m done on the patient rodent wheel. I’m fully aware of the risks.
I’m sorry. “

We’ll see if this is clear enough with the new guy.  He’s been reasonable in the past (saw him many, many years ago when I was still able to work, and only left when I switched jobs and had different insurance).

DO NOT MOVE TO Northern ILLINOIS if you have a lot of medical issues and expect decent care from  “local” “healthcare professionals” unless you get the one that implies “merciful”  (all sold out to other companies and they’re no longer advocates for patient well-being, but profits, but I’m hoping the one I’m with now is at least not terrifying).   Smaller communities are being paid bonuses to deny care to seniors and the disabled…so they send folks for tests that are cheaper than the fix… and/or hope that folks give up, since that population is limited in transportation options many times.

https://www.forbes.com/sites/theapothecary/2016/02/21/aca-savings-paying-doctors-and-hospitals-bonuses-to-deny-care-to-patients/#6a9ec5aa6c46

Well, mission accomplished.  I’m done.

Buying a Reborn Doll

I collect and create reborn dolls.  I often cruise through eBay to find used reborn to either collect as is, or to repair/upgrade them (they’re also USUALLY cheaper)…. and I have found some shady junk inside of those dolls.  And those are the ones that are actually reborns.  Many are just plain old dolls or collectible dolls that are mass produced.  None of those are reborns. They CAN be made INTO reborns- but out of the box factory dolls are not art.  Reborns are an art form.  Those who paint them are reborn artists.

What is a reborn?   A reborn doll is a one of a kind, hand painted collectible doll for adults. They are NOT toys.   It is not a factory made doll. It’s not a doll from Ashton Drake or Paradise Galleries (those are collectible dolls- and many are very sweet).  It is not a “handmade” thing with over 100 available from China.

It takes hours to make a reborn from a blank kit.  The paint is done in layers- starting with the veining, base skin tone, blushing, nails tipped in white, eyebrows and lashes, etc.  Many are indistinguishable from a real baby in photos.

 

They are then weighted and stuffed.  The weighting is done with fine GLASS BEADS- not aquarium rocks, steel wool, rags, newspaper, pebbles, or anything else besides polyfill stuffing.  I’ve actually pulled those things out of dolls I’ve purchased… and immediately fixed.  I personally do not like poly pellets.  They don’t add enough realistic weight, and take up much more space, without providing any real benefit.

Reborns shouldn’t have eyebrows drawn on by permanent markers.  There should be visible blushing. Every wrinkle should be painted.  Hair can vary.  I personally find human hair to be creepy- but mohair rooted one hair at a time is exquisite when done well.  The limbs should be filled half way with glass beads, and the rest STUFFED with polyfil.   The weight in the body and head is done by filling nylon knee highs with fine glass beads, and putting them in the head (so it needs to be supported and is floppy IF the size of the doll is realistic with that- so no floppy 24 inch and up babies.  Another  weight is put in the butt.  The head should be fully stuffed with polyfil stuffing. You don’t want empty cheeks.   If there is a magnet for the pacifier, it should be placed correctly so that the pacifier fits the face properly.

They are expensive. Just the basic materials cost more than 130.00 just for the very basic doll kit (others cost more), body, stuffing, paint, beads, clothing, magnet for pacifier, etc.   That doesn’t include anything for the time it takes, or the ability to do them.   Solid silicone dolls are much more expensive.   And they weigh a ton.  But some are stunning.   The ‘usual’ reborn is vinyl (not the same as silicone, no matter how many times the Chinese sellers on eBay repeat it).   I typically charge $250-350, depending on the size and cost of materials. That gives me about $100 for my work, which takes many hours over several days.

This is how they start….

This is the Caleb kit (first one I did).

So be picky.  Ask questions.  If your reborn doesn’t look like a real baby- and I mean REAL, then don’t waste your money.  Keep looking.    Forever Babies Reborns on Facebook is my page, and where I will post when I have dolls available (studio is being reorganized at the moment).

Well, No More Palliative…

And I’m more than bummed in some ways, but in other ways, I’m really OK with it.  But, considering where I live, and my experiences with the medical folks here, it’s not that surprising that it’s been frustrating.  It’s been 16 days since the nurse was here to meet with me for being on palliative.  I was told that the chaplain and social worker would contact me, to set up a time to come and meet with me as well.  I haven’t heard from anyone.   When I called the nurse today, and asked to be taken off of the list, she asked if something had happened, and I basically said “Yeah- nothing!”.   She told me people had been sick.  Had I known that (COMMUNICATION), I would have understood.  Why can’t someone just let a person know that they weren’t forgotten, and someone would be in touch as soon as they could.  I can understand THAT.  Even a 15 second e-mail… that would have been enough.  I could have sent my well-wishes for the sick staff  in a reply.

At the only meeting, I was basically told that there were much sicker patients than myself, and what did I want from palliative- which sounded like I didn’t belong.  The next day on the phone, it didn’t seem to be an issue, so I didn’t bring it up.   I know there are sicker people out there- I used to take care of them !   But this isn’t a competition !   When I mentioned knowing that they had sicker patients, she said that she didn’t mean it that way… OK. that’s fine.  Good to know.   *thumbs up*

Ended up OK- should I decide later on that I want to try palliative again.  But for now, I’m on my own. Again… or is it still?   I see the gallbladder surgeon on Friday (with a completely different healthcare system in town)… once the gallbladder is out, my days with doctors will be few and far between.   Seems much safer like that, and if not safer, at least much less frustrating.

“You Look OK… “

Well, that’s great !  I’m glad I don’t look like I feel...  I’d have to worry about the dogs mistaking me for a fire  hydrant or other excretory depository.

I’m not sure what THIS looks like: 
– autonomic dysfunction: inconsistent regulation of blood pressure, heart rate, temperature
– diabetes w/complications on insulin
– degenerative joint disease (with one shoulder now having symptoms, both shoulders, both hips, and both knees involved- and no “elective” replacement surgeries because of my history of pulmonary emboli).
– degenerative disc disease, from cervical spine to sacral spine (or neck to butt)
– severe fibromyalgia
– carpal tunnel
– TMJ
– peripheral neuropathy (progressive sensory, diabetic amyotrophy)
– nocturnal epilepsy
– neurocardiogenic syncope/POTS (related to autonomic dysfunction/dysautonomia)
– GERD (fairly severe)
– epigastric hernia (vs. ventral- still getting worked up)
– sleep apnea
– diabetic nerve pain (feels like thighs are on fire, or hot needles in feet)
– defeated patient with little hope of getting anything addressed without some sort of support.

And I’m not sure how ‘visible’ my history is, either:
–  APL (acute promyelocytic leukemia)
– acute, subacute, and chronic pulmonary emboli in all three lobes of my right lung and           right pulmonary artery
–  multiple concussions
–  mild stroke
–  TIAs
–  falls
–  hydration issues
–  kidney injury (related to dehydration)
–  pyelonephritis
–  sepsis (r/t pyelonephritis, cancer, and post knee replacement UTI)
–  and I’m sure things I’m forgetting, including several surgeries.

Now add a doctor for nearly each of those, who don’t talk to each other.   I’m supposed to manage it all, AND manage the communication (or lack thereof) between doctors.   BTDT, and it ain’t working !   My job is to be a compliant patient.  But how can I be compliant when decisions are being made without any input from myself, and the doctors not communicating with each other before ragging on me?  I get to be a participant in my own life !!   If not, I can’t work with that physician/NP/PA/XYZ.   I can’t trust anybody who won’t hear MY concerns.   The first part of assessment is focusing on the issue at hand- and that includes patient concerns.  LISTEN- it’s cheap and used to be fairly standard.

Otherwise, if I’m not a part of my own healthcare, why should I go see those who have ME figured out without my participation?