About JillinoisRN

A disabled RN who is still trying to find ways to help people. I've got a lot of interests, and a lot of things I'd like to convey to people.... whether they want to 'hear' them remains to be seen :)

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.

Here are some of the babies I’ve painted or repaired (repainted or added layers).

This is how they start….

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

And this is how he ended up:

“Caleb” kit
14″ long, 2 pounds

Caleb kit

‘Avery’ sculpt
21 inches, and about 6 pounds

‘Taite’ kit
16 inches and about 3 pounds.

This one went to OH this week 🙂

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?

 

 

 

Four Months Using MEDICAL Cannabis… It’s About the CBD, Folks !!

OK, so it’s been 4 months since I’ve had my medical cannabis card.  I’m still learning, but have been amazed at the unexpected effects of using CBD and THC.   I’m now getting into terpenes, which is a totally different post for the future.  Chemistry was never my ‘thing’, but I’m having to adjust a bit with that !!

I actually have this poster in front of my gas fireplace in my living room !! No hiding it !

Some of this might get into the TMI territory- and I’m OK with that if it helps someone else.  I’ve written before about my battles with eating disorders.  I was a starving laxative abuser.  I didn’t binge much, but if “forced” to eat a ‘normal’ meal  with others, I’d load up on laxatives BEFORE eating, so things moved more quickly.  Long term effect of that?   Can’t poo without laxatives. At all.  Prior to using the CBD in particular, I was taking SIX stool softeners and SIX stool softeners with stimulant laxative EVERY DAY.   I’m now down to  NO laxatives !!  That is a minor miracle, considering I’d had to take the softener w/laxative since 1995 (last bad anorexia relapse).  That’s right.  23 years.  Part of that is also due to being able to stop some of the medications that are constipating (opiates, anticonvulsants, nausea meds, etc).   But prior to being on any of those, I was taking three softeners w/laxative daily.   Something changed- and all that changed was  adding medical cannabis products- especially the CBD.

CBD oils are not all the same.  You need one with a good track record.  I USED to  like Charlotte’s Web.  Then I discovered the unclear labeling that looks like the capsules are 15 or 35mg of CBD, when it’s a total cannabinoid dose.  This matters a LOT when titrating THC doses.  I got VERY sick from this unclear labeling and only noticed the change when they added the actual dose of CBD to the info on their website, but NOT on the bottles of their products. I will no longer use Charlotte’s Web, and am moving to Plus CBD and/or Elixinol.   I asked Charlotte’s Web about the lack of clear labelling on the bottles, and got no reply.

Most of the time, I use the capsules.  I do have the oil for edibles, or sublingual use for faster onset of action.  CBD is the base of my medical cannabis ‘program’.  That might disappoint those who hope for using more  mind-bending THC as their primary medication.  But THC is more of an enhancer.  I don’t like the feeling of having too much THC (and that amount is different for everyone).  This is a core difference between medical and recreational cannabis.  I don’t find anything “recreational” about it.    This is about a better quality of life….not escaping it.

Since starting the CBD and THC,  my psoriasis is cleared up by about %95.  That was unexpected, and amazing after years of prescription and over the counter shampoos, creams, solutions, etc.   I’ve also been able to completely get off of carbamazepine (Tegretol), cut the gabapentin (Neurontin) by %60, and subsequently stop or reduce the medications and supplements to deal with the side effects of those meds (especially the carbamazepine).

Cannabis is great for chronic conditions, and some acute symptoms (nausea).  It’s not optimal for acute pain, as I found out when I broke my ankle a month ago.  I’ve needed opiates a few times this month (6 doses) to allow me to sleep with the acute pain.  But that’s still very little compared to most opiate consumption after something like a broken weight-bearing bone.  I was disappointed about taking the opiates, but I also needed to be practical.  Since I’ve never been addicted to drugs or alcohol, I have some leeway to use opiates, but the goal is not to use them.  It had been quite a while since I’d used the Norco 10/325, and the first dose was a doozy.  I could definitely feel it (not good).   After that, I split the pill in half.


As I mentioned, my next ‘thing’ to figure out is how to use the terpenes, which are compounds in virtually every plant.  They have medicinal benefits, and I want to learn how to use them.  I’ll post more as I learn more, and have a chance to use them.

So, there’s always more to learn, but it’s been an overall VERY good experience.   My primary form of cannabis is capsules, but I also use tablets, mints, candy/chocolate, other edibles, concentrates, occasional vaping, and occasional dry herb vaping.   I don’t smoke. No combustion = no products of combustion.  Vaping creates steam, so MUCH less likely to have toxins.  To me, smoked cannabis absolutely reeks, and I don’t want to expose my dogs to that (or get them stoned), bug the neighbors, or stink up my house.   I also have distillates of CBD to use with cooking, should I ever get some culinary bug after my ankle heals.  Watch “Bong Apetit” on Viceland if you want some great ganja cooking tips.

By getting the small dose products, it’s easier to titrate the THC dose. That’s one reason I love the Ascend THC tablets- they’re only 2.5mg each, and can be split if need be (I use a whole one).

These come in different ratios of CBD:THC… I like the 2:1. Ends up being about 12-14mg of CBD and 6-7mg THC in each capsule.

2.5mg THC tablets.

SO, if you aren’t getting the benefits from medical cannabis that you hoped for, I’d encourage you to take a look at how much CBD you’re using.   An example of the doses I use per day (and it is different for everyone, and you ALWAYS start low and go slow when increasing doses !!).  My current dose is 44 mg CBD (take 18 mg in the a.m., and 26mg in the evening) and 2.5-7.5mg of THC in divided doses per day. 

EDIT:  Because of dosing confusion on the Charlotte’s Web capsules, I’ll be changing to Elixinol and/or Plus CBD.  I went through a lot of craziness with the THC dose because of the CBD dose not being clear- it was off by half.  TOTAL cannabinoids are NOT the same as the CBD dose.  Charlotte’s Web wouldn’t accept my product review.