My PORT: a FB post and how I feel about the piece

What does anyone know about getting ports removed in RSD? I had one put in back in March-and I regret it, of course, because it spread my RSD throughout my whole body. My face was spared until June: then an emergency root canal-none of us were thinking about the length: it was a front tooth: mine are a mess from this-this is the thing: I have had a chest x-ray when they were trying to get blood from it earlier this month, and it was just a 24 hour nightmare of a stay in a hospital-I have not talked to a doctor or seen one since: I FEEL better! Mentally. But I have decided that this "Port to Hell" as I have come to call it, as it is useless to me, since I am not going back for any more nerve blocks-nor do I want ketamine, I believe. I want my body to just have a dang break. Period. Just to heal. Time to relax, if possible-life a life as normally as I can-yes: I have been legally prescribed small amounts of medical marijuana-I don't use it much, my lungs don't tolerate that sort of thing, and $$$$$$ as it was looking at ketamine, since six insurance denials. My cat can crawl on my chest: and it hurts like crazy if her paw even touches it....big time!!! I react so bad to it, she usually just jumps off and runs-I feel bad-and it's not why, but I am tired of being dumped with meds, and stuff, I want some time. What have the experiences been getting these tings removed in terms of further complications? It feels almost like I am "rejecting it" if not physically, I just for my mental health-want the thing out 

 

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Thanks. My mental health was getting tenuous for a while-and here is how bad my RSD has overtaken my life; I have had so little time to take care of ME and even see the psychiatrist I see: about two months ago, I hit the wall-pain-wise, but also I just about snapped mentally from a life of doctpr visits--and told my PCP: I am wiped out. I live in the country now. Pretty, quiet, cool and very quiet. My pain levels haven't gone up-and I really want to cut it to just the essentials. If my stimulation is kept to minimum and I am...and mentally-it helps. My meds-quartered (I don't take any opiates, except one, and ONLY when I HAVE no options. And I have felt better since all the hospital visits have slowed to a trickle. TWO appointments in ONE month. My moratorium: you come to me. My psychiatrist is coming tomorrow. I am actually looking forward to seeing him--on my turf: and so he can see what this has done to me. I am 6'1 and my "medical care?" has dropped me to 140. Not healthy. The Schwanns guy is determined to fatten me up-and I finally feel like I want to let him--but like everything: in moderation!!! This thing is gonna come out-it probably wouldn't flush anymore anyhow. ThankI can't have it out just by getting it pulled-it's a procedure. A port is a tunnelled central line: it is beneath the skin. I hate it-it just reminds me of so many years of paralyzing pain: and a time when I wasn't coping with it well.   

It hasn't even been flushed regularly: my PCP won't order the home health to do it because she "didn't order the port" and I think the PM doc expected I'd be doing exactly waht with it? Coming in for how many nerve blocks? Come on: when I lay in bed after the 4th, sick, in pain, and still miserable, I snapped a photo with my webcam: it captures it perfectly: "What next?" What are you going to do to make this any worse, for Pete's sake? I should dig that out. I look awful, and the only thing that holds me back? My nutritional state: is deplorable. I doubt that if Schwanns did not deliver I would ever make it to the kitchen or oh, maybe like EAT a few times a week. Back in April, I was recommended to have a feeding tube, and the doc mistook a pile of sagging skin (literally, and as nasty as it sounds) for subcutaneous fat. Back then I was like, "Help me find it, cuz I have been looking!" Today's meals? A popsicle and an Italian ice. First 2 decent meals in about all month. THAT is why I smoke a little (TINY bit-as the crap is outrageously $$$) but is the ONLY thing that has successfully stimulated my GI tract. Only narcotic is a PRN I take maybe a couple times a WEEK (if that), and so no-it is not gastroparesis; but there's other problems 

Only thing that keeps me I guess, is that my nutrition is so very poor: I mean beyond "gain 20 pounds" if you know what I mean: I am quite underweight. Left to my own devices, I would eat only enough to get by: I doubt my PCP understands that, in fact, I KNOW she doesn't. I have lost almost 30 pounds between a hospital stay (Ugghhh!! Nightmare: avoid them!) in early April and one recently earlier in July. 20 pounds-and I was dumping in the high proteink high calories stuff I needed, careful balancing act of course, and whamo; one abscessed tooth. Antibiotics made me so nauseated that I coldn't keep the stuff down, and my weight, with THC or not is back in or not: so I leave it out-except when my pain is intolerable-and I mean wicked bad...But the hospitalist read a BS one-liner that some doc early on in my RSD days: said I would "infect myself" and vetoed the TPN or any enteral nutrition. But the tip is out of place on the port: so it's either leave it or find someone who knows crap about increased caloric needs when you have long term CP that is severe such as RSD:: which is a problem-and THE ONLY reason it is still in-but it won't draw blood, so I have to do something.

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