why or where, life with chronic pain

I have let mood dictate my recent lack of communication, but tonight it's on.
Not much has really been going on. Lee is doing well, kids are great, and I'm doing relatively ok on the blood issue. I'm not doing ok on the pain issue though.
I always hesitate to talk about pain. It's not observable unless there's a visible cause, broken bone, impaled by a pole type of visible. It's a hidden curse. You can say I hurt, but the next question is always "why", followed by "where". The why is the diagnosis the doctor gives. The where...it all depends.  My pain is known as chronic pain syndrome. I am a prisoner and my number is 338.4.
Recently we had to make a major change to my pain management program. We went in a direction I never wanted to go in. It had to be done though because of my liver. With it being enlarged anything with Tylenol is now off the table. I'm now on a long acting with the same drug in a short acting form for break through pain. My doctor suggested this about a year ago(well before we knew of the liver issue), but I was hesitant and declined. I felt then that if I went for the stronger drugs it would mean I failed, that I was getting worse, and then there was also the mindset that only fakers that are addicted to narcotics and need their high use these drugs. I refused to risk that type of addiction, though after 4 years on any opiod narcotic 3-5 times a day every day there is going to be some amount of physical addiction.
I got the new prescription and turned it in to the pharmacy. Then I cried all the way home. I feel like I'm starting over again, I really do feel like I failed, though I really have no option any more.

Life goes on and you learn to live with pain. And you learn to hide the pain, and that you are on these medications.

I'm starting to hate doctors

I've spent a lot of time pondering my appointment today. I still continue to confuse, but what else can you expect from me.

Basically what it comes down to is I have polycythemia, but it doesn't meet guidelines for primary or for secondary.
Hematocrit, hemoglobin, white and red counts, and neutrophils are still high. Those 5 are all above the number to be considered as positive for polycythemia.
I'm JAK2 negative, which a positive would be 100% definitive for PV, but 5% of people with PV are JAK -.
My erythropoeitin(EPO) levels are solidly in the normal range. Low would be a pretty solid indicator of primary PV, high is a definite for secondary.
My iron levels are fine.
Red cell mass is normal.
My liver is fairly enlarged with fatty infiltrates.
My spleen is slightly enlarged.
Kidneys and gallbladder are perfect.

No tumors or abnormalities on the ultrasound.

We discussed doing a bone marrow biopsy but we have decided against that for now. Mainly because my labs are stable. For five years they have been slightly elevated. They have never been massively elevated. With that stability, the EPO and JAK2 being negative my doctor doesn't feel there is a need to rush into more testing or treatment at this time.

anxiety can climb ladders

Tomorrow is the next oncology appointment. The closer it gets the more anxious I become. Good thing I have a lot to do to keep me busy today.
I don't know if I am noticing things more, or if they are really in my head. Symptoms mainly.
Exhaustion, I know I'm always tired, but sometimes it just hits out of the blue and I have to stop what I'm doing. It's been this way for a long time, but now I notice it more. You would think with all these extra oxygen carrying red cells it wouldn't hit that hard.
Pain, especially abdominal. Liver especially, but I've also been having more on the left side. Admittedly I've had periodic pain there, always blamed it on gas before but now I wonder if it really is my spleen. The right side pain I'm confident is my liver, especially after the doc poked at it and I was ready to hit him it hurt so bad.
Joints, yes I've had pain there for awhile. Pain doc says fibromyalgia, onc says PV. I say I just and pain meds don't always help.
Speaking of pain... My pain doc did a PROOVE genetic test to see what drugs I metabolize slow(meaning they won't work well for me) and what will work best for me. It found I metabolize hydrocodone slow, which is what I'm on. She offered to switch me to one that I metabolize normally. The issue there is the ones on that list I can take are strong. Morphine, dilaudid, fentanyl...oxycodone is on that list but I had a big issue last time I tried it, I was sicker than a dog. It may have partly been from the migraine or spinal tap they did, but I was super sick and afraid to try it again. So, hydrocodone works enough right now. I realize I will never be out of pain but if it keeps me functioning enough to work then I'm ok with that.
Another issue with the hydrocodone is the Tylenol in it. I don't take a lot but even that may be too much for my liver. I had an abdominal ultrasound 11 days ago, I get results tomorrow. After that we will decide next route.
The PROOVE test also showed some chemo drugs I won't respond well to. I'll be giving my other docs a copy of the results.
So that's all folks. Time to get cleaning, appraiser is coming Thursday and gotta get the basement ready.

Life takes a dump

 I'm depressed. I can finally really truly and honestly say that.
Majority of the time I am alone I spend in tears.
It's been three weeks now, or is it four?  Each day is just blending into the next and I am just going through the motions and doing what's expected of me, and even then I fear messing up or disappointing. I think I've disappointed a lot of people.
 Elizabeth Kubler Ross had it right with her stages of grief. Grief doesn't have to come just with death, but it can come with other things, like finding out that you have an essentially terminal disease, lose a job, get divorced etc.
 I went through this when we learned of Lee's cancer, but hid it much better than I am now, or maybe I just don't remember, or I internalized it. Whichever it was I think I dealt better with it, at last I feel I did.
 I struggle just to do daily things that are expected, including getting out of bed and getting dressed. I manage at work, put that fake persona on and go about my day. I'm afraid to let people see the real me, to see who I have become lately. It's not the same person I was a few weeks ago, I'm not the same person.

I know this won't last forever. I know I will be ok, eventually, and then I can be the real me again.