Another ER visit

I haven't been online much lately because I've been exhausted. On Friday, my wife and I volunteered at a local dog shelter for three hours and I WAY overdid it. I missed everything we had planned on Saturday. On Sunday, we volunteered for about eleven hours, but  I made sure that I sat most of the time (not easy for me). I washed and folded laundry, except when we took the dogs to Petco, which was really easy, almost therapeutic. I felt a lot better at the end of Sunday than the end of Friday, so we planned on volunteering on Monday (didn't happen).

Yesterday, we went to the dog shelter again, but unfortunately my wife got pretty sick. She's had  a headache/migraine for days and hasn't eaten much. She was pretty dehydrated and couldn't stop vomiting, so we went to the ER. We were taken back pretty quickly because of her cardiac history, but they left her in the room without the nurse or CRNP checking on here for over AN HOUR!!! Even once the doctor ordered the IV Zofran, Toradol, and saline it took over half an hour before they gave it to her (I had to page the buses station repeatedly). The ER want even busy! They're usually at 200% capacity (patients in hallways), but they were only at 50-70% capacity.

They discharged her without her having eaten anything

The b!tch nun that came in to discharge was extremely rude when we asked for the sandwich and ginger ale that the CRNP said she could have. She got a ginger ale. I had to give her my Zofran 8mg before we left the hospital because she was discharged so quickly.

How can you discharge a nausea and vomiting patient without making sure they can keep food down? Plus, it was 1am and we didn't have want food at home that was easy to keep down, so we had to stop and buy her something on the way home.

ERs need to stop rushing patients out the door before making sure they're okay, ESPECIALLY when they don't need the bed.

I wonder if they do it to everyone. My wife has a capitated Medicaid HMO and I have Medicare Parts A&B as primary and traditional Medicaid as secondary. Has anyone else experienced this? If so, what type of insurance do you have?

She's doing better now, thanks to my Zofran (her insurance refuses to cover it). She's been sleeping ever since, except when I wake her up to take her meds.

To be completely honest, if my ER hadn't helped her, I was ready to go out and find her some cannabis so that she could eat and drink and break the cyclical vomiting cycle. She's become acidotic from this before, so I was pretty worried. Thankfully, their 2mg of IV ondansetron and 990ml of 0.9% NaCl solution (saline) helped her enough that she could keep down 16mg (8mg*2) of oral ondansetron, then some real food.

Steve

Paying for it

I spent a few hours volunteering at the local animal shelter yesterday. I WAY over did it yesterday, and now the nerves in my legs are on fire. I can practically trace the nerves because they're so inflamed. I missed our weekly outing with our daughter (museums, historical society, hikes, parks, carnival, Army war college, etcetera) this morning. This afternoon, I didn't get to go to the animal shelter (my wife still went and helped for two hours). And now, I'm missing out on going out with some of the people at the shelter (my wife got both of us invited while  I slept and she volunteered).

I'm not sure which is more frustrating
1) constant, unrelenting pain
2) inconceivable BTP (breakthrough pain) flares
3) missing out on everything (family stuff, social stuff)
4) NO ONE gets it

I think the worst part of this is that none of this is necessary! I'm in pain for no legitimate reason. My pain was under control (bad, but under control) with low dose methadone, Actiq, Duragesic, and oxymorphone. My pain was virtually eliminated with 3mg/day intrathecal morphine. I feel like the one sane person in a world of crazy. I feel like I'm screaming and no one is listening. I'm in excruciating pain, there's medication that can fix it, I'm insured, my insurance will cover Duragesic, Actiq, methadone, oxymorphone, AND an intrathecal pump, I have NO risk factors (including NO family history) for abuse, I don't smoke, I don't drink, I've never abused my medication, I've never been high, I have cancer, I'm dying, I've never run out of meds or needed an early refill, I've tried EVERY non-drug treatment recommended, I've tried every non-opioid, I've tried every single weaker opioid, I'm beyond compliant, I keep myself informed (as instructed, although it's being used against me now)... and, STILL, I'm treated like shit and get inadequate treatment.

How does this make any sense to anyone?

Steve

Saturday

I started writing this yesterday as a post to my support group, but couldn't focus long enough to edit it for this blog. I've tried to edit it from current tense to past tense, but I easily could have missed something and if I did, I apologize.
Written 9/29/2013
Edited 10/8/2014

-------------------------

I spent most of Saturday at my daughter's favorite park and, oddly enough, the local cemetery (Molly Pitcher is buried there, my 5 year old daughter can't get enough of history) with my daughter. We (my wife) and I took her to the park with my Dad today and I'm in excruciating pain. I knew that I'd pay for it, I was maxed out on my breakthrough pain meds and Zofran/ondansetron for the day before dinnertime* and I would kill for an epidural or nerve block (I don't believe in serial nerve blocks and I never really want too have one done), but it was do worth it to see her eyes light up while reading the historical marker and making new friends and racing down the slide with one of her seven new friends and finally mastering the monkey bars. We also took my Dad to Giant (grocery store) because he needed groceries and things have been tight and Bank of America hasn't exactly followed through with the pre-employment promises and it was nice to be able to help him.

Anyway, back to my point, I may not walk for days, but nothing compares to spending eight hours with your kid and being sure that she, at least for a little while, they forgot that your sick and/or dying.

She figured out that I was sick I'm her own and I just couldn't lie to her. Yes, I sugar-coated the facts, but I lost too many people without watching and can never forgive the adults that let me get blind-sided. I was the kid that was way too mature for my age and got along with adults just as well as I did with kids, I babysat my newborn cousin at the age of ten. Yes, adult(s) were in the house, but they were busy and I liked the responsibility. Anyway, she's exactly like that and we thought she could handle it, and she has. My mother doesn't agree, but she was/is a terrible mother. She's also one of the ones who let me repeatedly get blindsided. My point is that her opinion means nothing to me. In fact, her disagreement assures me that I made he right choice.

Anyway, my real reason for this post is to say that I had an awesome day and I have an awesome kid and it was worth the pain and suffering over the next 3-4 days.

* My doctor allows me to take my six daily doses as I see fit instead of every for hours. PAIN MEDICATION SHOULD ALWAYS BE TAKEN AS PRESCRIBED

Bad Days

I've been having bad days for almost a month straight. Opioid pain medications are great, when they're dosed properly, but when the DEA has doctors too afraid to prescribe adequate doses, patients suffer.

As I continue to suffer through a flare without the Actiq/OTFC (or Fentora, Onsolis, Subsys, Lazanda, or Abstral), I can comprehend why some people resort to street drugs. I, myself, am allergic to morphine, which is the major active metabolite of diacetylmorphine. I'm lucky in a sense because my allergy to morphine protects me from any temptation that might arise on days like this when my pain is unbearable.

No one should get their medication from the streets, whether it be heroin/diacetylmorphine/diamorphine, morphine, oxymorphone/Opana, oxycodone/OxyContin/OxyIR/Roxicodone, hydromorphone/Dilaudid/Exalgo, hydrocodone/Norco/Vicodin, codeine, methadone, fentanyl/Sublimaze/Duragesuc, sufentanil/Sufenta, alfentanil/Alfenta/Rapifen, or any other opioid. Medications should be taken EXACTLY as prescribed by your doctor.

Now that my public service announcement is complete, I'm going to take my full dose of lorazepam and tizanidine and pray for some asleep.

Some non-opioid pain relief options (depending on your pain type) include:
* Ice/cold packs
* Heating pads
* benzodiazepines (if prescribed)
* muscle relaxers
* Ibuprofen/Advil/Motrin
* hot shower or bath
* massage
* meditation
* distraction (TV, movies, etcetera)
* comedy (endorphins)
* sex/orgasm (endorphins)

-Steve

Remember that you can share my blog on chronic, intractable pain at
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I'm always open to comments and suggestions:
IntractablePainKills@gmail.com

Sleep, or lack thereof

As day five of my pain flare begins and, at 6:40am, I still haven't slept I am left with a choice. I can take a little extra medication and finally get some sleep or sitting up and suffering.

It's times like this when I am reminded how lucky I was two years ago when I could properly treat 2-4 of my up to six daily flares. Of course, now that flares last days, there technically are fewer of them.

I'm so tempted to treat this flare, but I must pick and choose because I'm now on less than half of what I used to take.

For now, I'll suffer in the dark and hope that the Rozerem, tizanidine, and lorazepam kick in soon and give me a few hours of relief.



Steve
IntractablePainKills@gmail.com