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saw the doc
Saw the doc yesterday; I do it every three months, which is about as often as I go outside for any reason. Five hours in a car is pure pain, but yesterday was special; the moment we took the off-ramp to the hiway out of Ks City we saw that it had become a giant parking lot. About three miles ahead, two helicopters were circling right over the the hiway.
My daughter took the 1st off-ramp, confident we would find a road that parallels the Interstate, get back on and take an alternate route. It didn't quite turn out that way. We had just left an Interstate in Ks City during rush hour, and that off ramp took us onto a nice, forested area along a curving hiway. It was like the Twilight Zone: Scotty's transporter had zapped us fron Ks City to some place in Vermont. We drove 5 miles without finding a single cross-street that would take us parallel with the Interstate; 5 miles North instead of South. At the 1st intersection with traffic lights, we turned left and began looking for a street the would take us back to the Interstate. After 3 miles, we found a mountain of dirt across the road and a Road Closed sign. To cut a long story short, after a few more wrong streets we were apporached by a group of 5 young gentlemen dressed like the crack-dealers dress in Cops. No, we don't have a cell phone; she only goes to Walmart and I'm a stay-at-home. The only good thing I can say about that detour is that we never lost our sense of humor -- though I think her laughter was a bit forced as she drove right past the young men. This is story that will be told and retold by my children for years to come. The sad part is that it's true, it will be retold and laughed about: Our lives really are that dull. We all love long, kinda pointless stories; as long as there's some gallows humor in it somewhere. But the detour happened after I saw the doc. Anyway, about the doc: I weigh 134#, exactly what I weighed 3 months ago. At our last appt, I asked him to set up an intra-thecal pump trial (After 2 botched spine surgeries I swore no one would ever go there again, but I'm so sick of oxycodone I have to do something), and he said he would set it up as soon as I gained some more weight. The first thing he asked was how much I weighed. I know my despair showed in my eyes, even though it passed quickly; I know I'll gain weight but for that instant I was the 7 year-old who opened the big present at Christmas and saw it wasn't a model train. I told him I couldn't believe I hadn't gained any weight; that I had recently eaten 2 burgers and fries and he knew there was a time when it took a whole day to finish a Big Mac. He knows how desperate I am to get off oxycodone. I always feel drugged and it always feels more like a hangover than a high. I don't understand how people can get high off pain drugs (except IM morphine, where I'm still not sure whether it beats sex or just comes very close). Anyway, he's sending the paperwork for a trial to work comp, and I don't see how they can refuse to pay. If they refuse, they have to pay my lawyer for the hearing and any appeals, even if we lose. And he told me I would be in hospital for the trial. I hate hospitals. It isn't that I'm a crotchety old man who would be expected to hate just about everything, I have a special reason for hating hospitals:I SMOKE. I honest-to-God fear the coming ordeal. I have never quit smoking for more than half-a-day, and I only tried to quit twice in my life. I guess I'll buy a Jumbo-Pak of nicotine patches and gum and candy and whatever, but I know I'll suffer. But I'm so desperate to get off oxy's that I'm gonna go through with it, And it's possible that the pump will allow me to be more active; whenever I do anything right now, I feel the pain begin within a moment or up to half and hour, depending on what I do (I can sit upright for about 30 minutes before pain starts increasing). If the pump can prevent the pain from starting, I might be able to drive again. I wouldn't think of driving now because of the oxy's, but even riding fully reclined starts really hurting within an hour. Being able to sit and drive again would take me out of this 24/7 chair...out of this room, which is larger and nicer, than any prison cell (and equipped with the electronic goodies I'm allowed to touch) So I'm putting a lot of hope on this intra-thecal pump. I know that much of this hope is probably unrealistic, but I thrive on unrealistic hopes. Not false hopes. False hopes are fantasizing about how your gonna spend the Powerball Jackpot without paying the admission fee. I pay my dues every month; and that $10.00 buys me countless hours with homes, cars, and houseboats. The pump could do everything I hope it will. It has done it for others -- but not everyone. So I'll do the praying about that, and to those inclined to pray for me; pray I will survive the Hell of nocotine withdrawal...Vic |
Good Luck...
Hi Vicc,
I have read many of your post and learned a lot I never knew about RSD. You do not know me but I felt I wanted to connect. I just came out of a 5 day ketamine infusion, it worked but the treatment just killed my body its my 3rd. I am scheduled for boosters at Drexel starting next week and all others are scheduled but right now I will only agree to do 1 and then reevaluate. I just don't react to the Ketamine well, throwing up, migraines during and after. Of course the give me meds. to combat all this, but what a drag. Never again.... But anyway I see you are also going for some type of infusion and being admitted to the Hospital. I truly wish you the best results and and smooth sailing. I will be praying for you and hoping for the best. Ann |
Ideas about weight gain...and SOOO Sorry this wound up SOOO long! *sigh
Vic,
I know you don’t mind my long posts, and that you will actually read them...so I figured that I would come out of lurking to post to you. LOL. I don’t post as much as I used to on here, because folks don’t read what I write, so why bother, you know? But I know that you will.....others that write longish posts usually will take the time to read what folks write to them. You know what I mean? I am sorry about the detour that you and our daughter took on the way back from your Doc’s office. You had me kinda scared with the part about the “5 young gentlemen”, so I was very relieved that they didn’t approach your car or accost you in any other type of way. I have to go through Birmingham to get to my new doc (my old doc was in the middle of B’ham, not very far off of the Interstate at all, but this new one is all the way across B’ham, and I have to go driving through the city it’s self...through parts that I had never, ever been in before) and I know how scary it is to come face to face (even through a windshield) with those groups of young men. Birmingham has one of the highest crime rates in the country,...and people get dead or go missing up around there, daily. There is a girl from here that disappeared up there....the have only found her car, and it was found not far from where I drive through to get to my new doc’s office. Believe me, I DO NOT stop for ANYTHING there. But, I kinda got off of the whole detour thing. LOL. That so totally sounds like me, I sat here and kinda laughed about it. Only thing is, I would have not been scared to get off of the Hwy to try to find an alternate route, unless I was SURE of where I was, and that there was such a thing around....and if I had tried it, I am not so sure that I would have been able to get myself sorted back out right to get home. LOL..I think that I have mentioned a time or two before that I can get lost in a paper sack and not know how to find my way back out? LOL....it seems to be an inherited thing; my Grandmother (maternal) was like this, my Auntie is (mom’s sister), and Jay is. Weird thing about him...he gets lost on the ground, but not up in the air? How exactly does that work I wonder? ROFLMAO!!! I am glad that at least one of my kids doesn’t get lost. Meghan can find her way to and from just about anywhere you plunk her down in, as can my Mom. Wish I could....*sigh Ok...now, about your weight problem. I have an idea or two about that.... First, I have a question for you; have you ever had your blood tested to see if you are anemic? I am not a betting woman (ROFL..how many people can say that they have been to Vegas and NOT gambled? I only have played machines twice out of all of my trips there; once one time waiting for Bubba and Jay to get back from the bathroom at a casino we were passing through when my Dad INSISTED that I drop a coin into a machine [I didn’t win anything, and didn’t see the point in trying it again], and once when Bubba and I went and met Barb2406 at the Golden Nugget on Fremont Street. She suggested that we go across the way to The Horseshoe [I think that was the one...LOL] and try the machines there, so that is what we did. I won. I only played a Nickle Machine. I used a whole dollar’s worth to figure the thing out, and then actually played with my next dollar...and wound up winning $15 for my troubles! Not bad, if I do say so myself. Haven’t done it since, though...LOL. ****** Bubba off BIG TIME, because he was hitting the $1 ones, and something that was $20...and told me that if I could win on the .05 thing that I should try the higher ones, on which he was losing. I didn’t. He lost. I won. Point made, I thought. ROFLMAO!!), but I am willing to bet that you ARE anemic. I am like 90% to 99% sure of it. If you are....then that would explain the inability to gain weight. I myself tend to be a little anemic, but don’t seem to have trouble gaining weight. I have the opposite problem, probably because my metabolism is soooooo slow anymore. But, my Grandfather was anemic and couldn’t gain weight, even eating bags of candy to try to. My Mother is and always has been anemic. She had “Child Hood Anemia”, which I am sure has a more sophisticated technical name than that, and still fights it to this day. As a child, she couldn’t eat. She would gt hungry...and she would try to eat, but after only one or two bites, she would be “full as a tick” as we say here in The Land of Cotton, and felt like she absolutely couldn’t put anything else in, or she would puke. I didn’t totally understand this, until I had Jay and he got to be a toddler. Wound up that HE had the same problem. The child would be absolutely starving, and running around under my feet while I would be cooking supper (or breakfast, or whatever) BEGGING me to hurry up....yet when the meal was place in front of him, he would take only about 2 bites, and then say he was too full. The fights that we had with me trying to get him to eat, because I KNEW that he needed more nutrients than what he was getting from only a couple of bites. I tried EVERYTHING! I tried bribery; favorite deserts didn’t work, as he was too full feeling to eat whatever was already there; favorite suppers didn’t work, as the same thing would happen after only two bites; getting new privileges or losing favorite ones didn’t work, as he is a very stubborn child (hmmm..wonder where he gets that from? Probably the same place his sister does...LOL); MONEY didn’t even work. I tried EVERYTHING! The doctors didn’t want to test him for anemia, saying that he would eat when he was hungry.....and that boys didn’t usually get anemic, especially children at such a young age. I tried telling them to test him, because he has HORRIBLE nose bleeds....but they didn’t listen to me about that. It was only I kept on badgering them, telling them how I about had to force feed the child, and they finally started listening when he started to be “too small for his age” according to their STUPID charts (remember, this was a child that came into this world weighing 10 lbs 3 oz, and was between 23 and 24 inches long! NO WAY he should have been “small for his age”.......but he got that way) AND because he got one of his horrible nose bleeds IN the docs office (they were so bad, that I was scared to not check on him constantly at night. His nose would bleed then, too...and I was worried that he would choke on the blood running down his throat....) that they FINALLY decided to test his blood. Were they surprised to find that I WAS RIGHT! HE WAS Anemic! So, it was on to iron supplements for him, and off to get his nose cauterized. My brother also has anemia problems now, because of his HIV status. He has bad problems gaining and keeping on weight. He never used to...infact, he was more like me and had to FIGHT to keep weight off, instead of to keep it on. Jay’s girl friend is also anemic, and also doesn’t eat enough to keep a fly alive. I had to get her to eat better things....like corn flakes in the morning that had a good % of daily iron, instead of the donut sticks that she had grabbed up, and had in front of her unopened. She didn’t know she was anemic, all she new is that her “blood iron was low”. SAME DAMN THING! Sheesh. When I got her to eat things that had more iron in them, she actually started getting a bit hungrier and eating a little bit better. I am sure that she is back to her old habits again, though. So, because of all of these things....I have some ideas of what to try to do to get some weight on you. ESPECIALLY If you are anemic. These things should work even if you are not. However, it would be helpful to find out if you are, as then you could find out from your doc about taking an iron supplement. Iron is NOT something that people should just take, like they tend to take other vitamins and minerals. Too much iron is toxic and WILL kill you. So, if a doc can tell you what mg or iron to take, how many times a day, according to your weight, and then be able to monitor and change that dosage as your weight changes that would be best. So, before you go taking ANY iron pills.....talk to your doc. Taking a daily vitamin that has some iron in it should be ok, as that isn’t the same as taking the straight old iron pills, that have become a staple in my family. The thing to understand about anemia is that it creates a vicious circle. Folks aren’t hungry when are anemic, so they don’t eat much, or right. The more that they don’t eat things (especially things that have iron in them) the more anemic that they get, and the less hungry they are. It goes around and around. To feel that you have to force your food, is a big sign to me that you are most likely anemic. It has sounded to me like you are having to force yourself to eat for a long while now, and that maybe you DO eat through out the day, but I bet that those 2 hamburgers and whatever, made you feel absolutely miserable to get down. Nice to tell the doc that you ate such a thing, but hard to get down, and was probably the most that you have eaten in one sitting in a while....right? First...DO NOT drink ANYTHING with Caffeine in it 2 hours before, or one hour after eating any meals. Reason for that is that Caffeine inhibits the body’s ability to absorb iron from the food that you eat. Same goes with taking that Vitamin w/iron supplement. Don’t take it when you are having your morning coffee. Take it at night, or something, if you are a caffeine fiend like I am, and HAVE To have my morning coffee. If you can get your system to start absorbing iron, it will help with your ability to start gaining your weight back. Even if you aren’t anemic, this is a good thing to do anyway, to help with caffeine intake. Pretty much the only thing that Jay could and would drink at meal times was milk. With all of the crap that is out there on the market, you would be surprised at just HOW MUCH stuff has caffeine in it. Even some of the juices do. So, try to read the labels. Sodas aren’t good to drink at mealtimes when you are having absorption problems....I can’t remember if it is the carbonation, or something else that is in ALL Of them that interferes. But they aren’t a good option when you are having troubles eating and/or gaining weight. Another thing that he had to do, was only have about an inch and a half of liquid in his glass at meal times. This was so that he didn’t fill up on whatever (be it water, or milk or whatever) he had to drink instead of on the food that he had in front of him. Since it took so very little to make him feel full, we couldn’t waste that “space” by getting it fulled up with liquid. However, it isn’t very pleasant to not having anything to wash your food down with at all. So, he could have that little bit, and then more once he was done with his meal. Jay doesn’t have troubles eating or with anemia now (don’t know if the anemia thing could pop up again in his future....I hope not. I know that he is OK now, though), but still to this day the child doesn’t drink much at all when he is eating. Probably if you measured it, it would turn out to be only an inch or two at the most of whatever is in his glass that he drinks with his meal. He will drink TONS afterwards though....LOL. I think that he just got into the habit, as he hasn’t had to worry about this for many years now. Not too bad of a habit to have, though,,,,right? Make sure that you are eating things that have some iron content in them. That way there is something for your body to absorb when you eat. TO just plain old gain weight, this is what they tell my brother to do; drink milkshakes! In his case, they just want the fat to get on him sometimes, so they tell him to drink whatever kind he wants, to just drink A LOT of them. He is like me, and a complete chocoholic, so that is what kind he tends to get. However, I have told him to try Vanilla and Strawberry (yuk...I HATE strawberry!) Because of the howl caffeine factor. But, sometimes it is best to just of with what you crave in order to get weight on. When he is trying to get weight back on, he tries eating something first, and then doing the milkshake thing. But, if he isn’t “that hungry” he will get a milkshake. They are filling and fattening. Another thing to try, is to get something like Slimfast or Boost, or whatever. NOT to use as someone like me would, to help get and keep weight off by following the directions on them....but as a thing to go WITH your meals. Or, if that is too filling right now, as a “Snack” between them. Lots of those shakes/drinks have BUNCHES of stuff that your body needs in them, including iron. So, you could try that and see if they help. Even if all you can do is drink one of those things and eat some chips or crackers or half a sandwich...that will help a little. I personally used to like to get the kind that you mix up yourself, and then follow the directions to make the “mouse” thing out of them, rather than the drink thing. Since you don’t need to LOOSE weight, you can add stuff to it in the blender too. TO make it taste better and to get more “stuff” into it to help put more “Stuff” on your bones. Things that do have a higher iron content that you might try eating are; Raisins (jay and I like those. My Mom hates them. Probably has something to do with having BOWLS of them forced down here when she was a kid and couldn’t eat) Spinach and other such greens (which I LOVE!!!) Liver (I hate that. Smells WONDERFUL but gack! My Mom loves it, though) Other Red Meats, and meats in general. This is gross, but when I am getting anemic (and no...it just doesnt have to do with the “normal” reason women tend to get that way each month. Not in my case, at any rate), I start craving RARE steak. I eat my steaks rare anyway, because I like them that way. I HATE an over cooked steak. However, in public, I will get med. rare in order to not gross out whomever I am eating supper with, if it isn’t “family”. But, the more anemic I get, the more I crave rare steak. I know I am getting pretty bad when my mouth waters just thinking about a rare steak and some spinach on the side. LOL Some of the cereals, breads, and whatnot that have high wheat content. Just read the labels and see what they have. If something has 25% of your daily value, and you can eat that thing 4 x a day...or other things that have iron in them of a similar %, then you are getting a good amount of iron. Similar to what I tried pointing out to Danni (Jay’s GF). After only one day of eating stuff that had better iron content, her apatite did get better. I just realized how every long this has gotten. I am sorry for that. So, I will end this here. I hope that there is something here that can help you. If I think of anything else, I will post it...in a shorter post. I really didn’t realize just how long this had gotten.....so I am really sorry for that. I hope that you didn’t try to sit and read it all in one sitting. Lord knows that it took me many more than one sitting to get it written. LOL. I think that is part of my problem; because I CAN’T sit and write things in one sitting, they wind up getting longer then they should because I have to keep coming back, and I loose track of just how long they really are. That, plus I am just naturally a talker. That doesn’t help much either. LOL Anyway...I hope that you can get some weight on you...and I HOPE that the pump does help you. Please try to not put all of your eggs in one basket, though. I have my fingers crossed that it WILL Help, but you know that there is always the possibility that it won’t. I don’t want you to fall into the kind of depression that I fell into when my perm SCS didn’t work like I had so hoped (and even convinced my self some what) that it would. I am not saying don’t have Hope..DO! Just....I don’t know. Try to keep your expectations realistic, and be prepared for the possibility that it might not be what it should be for you. Have you looked into that Pumpsters group? That might be a good place for you to get some info from. I hear that they are a GOOD group for those that are considering the pump, or that even think a pump is in their future. They are also supposed to be good for after the thing is implanted...to help with questions might arise after implantation, and support for afterwards too. Ok. Stopping here. Love you. Hope that you are doing ok. And have my fingers crossed and sending good thoughts and prayers that this all works out for you like it should! Love and :hug: Jose the long winded (or fingered) jabber jaws (or...jabber fingers? ROFL!!) |
vicc, my mother is a smoker. everytime she has been in the hospital..and it has been many...they give her the strongest patch to wear. would that help? will your dr allow that?
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hi vicc we havent been introduced yet
following my cervicle scs i was unable to swallow (they think that the surgery irritated some of the nerves that assist with the message to swallow and my crps jumped into my throat). why isnt really important what is important is that when i went in for surgery i weighed 125 and within a couple of months i was down to 83. it was finally decided that i needed a feeding tube just to stay at 83. 7 months later my swallow mechanism improved and they finally removed the tube. i still wasnt able to eat solid food, but soft foods were ok. anyway i went to gnc and got the protien powder body builders use to increase muscle mass. i will be the first to admit that the taste left a little some thing to be desired but it really helped with weight gain. i got the chocolate and mixed it with milk and it was pretty much a less than great chocolate milk (since gain weight was the idea i added a little chocolate syrup and that helped with the taste). i also got the vanilla and i mixed that with fruit juice and it actually wasnt to bad (occasionally i would add plain yougart and some frozen fruit...it was a little chunky but not so bad i couldnt swallow). i couldnt drink a whole glass at once so i would mix it in the blender pour some into a cup then put the rest in the refrigorator and a couple of hours later i would reblend it some more then pour some more into a glass. since i had all day i didnt really need to drink it all at once. it took a while but i got back up to 103 despite the fact that i continued to be unable to drink solid foods. someone else also mentioned boost, that stuff really doesnt taste good but i managed to get down one or two a day. also a thought since you are on w/c you might want to ask you pcp to refer you to a nutritionist (probably out of a nearby hospital). it may or may not be relevent but my nutritionist sent a letter to my work comp claims manager stating that i needed the boost or ensure. w/c ordered a case of it at a time (from walgreens in my case) and it was shipped to me so i didnt have to pay for it because it was essentially a prescribed medication. it was 35-40 dollars a month i didnt have to spend out of pocket then submit to my w/c for reimbursement. my doctor who handled my feeding tube stuff gave me the best advice i recieved regarding weight gain "you dont have to do it all in a couple of meals a day, just force yourself to at certain incriments all day long to consume enough to make you feel full." a large problem with the whole weight gain thing is the problem that your stomach actually shrinks when you eat less for longer periods of time, so you feel full more rapidly because there is less room. the more often you can stretch your stomach a little by acomplishing the feeling of full the faster you will find that you can eat more. sorry you are struggling to meet your doctors requirements for a pump i hope you get what you need so you can get off the meds that make you feel so yucky |
Hi Vicc,
I think a lot of RSD'ers are anemic. Like Jose, I am anemic and I still have to watch my weight. I have always said I could look at food and gain. So far I have stayed the same for the past 10 years so I happy about that but I cannot lose anymore no matter what I do. My Dr. still wants me to lose but it's not something I can do.
Do like Jose said, do the Slimfast. I tried that diet once and gained weight on that crap. I hope things work out for the pain pump. I would rather go that route then the SCS. They won't let me have either though because they claim that the CSS would keep them from working for me. But I sure pray that you get this and it does what you need for it to do. I remember what a time you have had over the years and you need some relief. About the story of getting lost. We got lost one time down in the wrong part of Kansas City on our way back to Ky. and boy was that a scary thing. We got lost another time in Indiana mountains. That took us about 8 hours to find our way out of that mess, it was at night. We were starving and couldn't even find a place to get food. Oh, for the good old days... I think in all of the years here in Co. we made over 50 trips back home and they were all unforgettable. If I went now I would fly down and I bet that would be a whole other story. What with the implant and the RSD and ear problems. What you said about it being the most exciting thing in a long time sounds like I feel. I was just thinking yesterday that I have not had anything exciting happening in my life in years. Anyway, I do hope things work out for you on the pump. Ada |
Hey bro
It is good to hear that your weight is at least stabilized, I was wondering if you were still losing weight or not.
I kinda wish I was having your problem at the moment LOL. Since I couldnt get the topamax anymore I have gained back all the weight I had lost, and then some hahahaha. The topamax took me down to 194 lbs, havent been that light in years, but now I have ballooned back up to 235. My wife said she couldnt get her arms around me anymore, even though she had a difficult time even when I was considered smaller hahahahaha! The weight lifter powder would help you put on some mass, but you would have to keep using it to keep the effect. Jose had the right idea with the shakes, but it wouldnt hurt to slip some of the powder into the shakes to beef you up. Back in my power lifting days when I needed to bulk up. Instead of using the HGH, roids, or powders, I would eat like a mad dog. I mean stuff myself constantly. I would order a large pizza with all the toppings and eat the whole thing, and have a half gallon of ice cream for desert. Proteins are your friend when your trying to gain weight, and that would help if your low on iron too. :winky: I know you wont be able to eat that much, but maybe you might be able to bench press your son when he ****** you off LOL. Good luck on that bro, and will be keeping you in my prayers. |
Hi Vic,
loved the story of the trip, and you kept a good sense of humor when i know you must have been hurting from the car ride. i wish you well in the hospital, and with the pump. while i was nursing i had an awesome 35 year old patient, that had terminal cancer, and he had the pump put in, and did get enough relief to go to italy! and back to teaching for a few months, maybe a year, before the cancer won. so it does work well if inserted correctly ... so i will add, make suere it is a doctor who is not an idiot! ha! and the protein in the drinks is the key ... used that in the hospital too. drink them between meals and with meals if possible. i don;t know how much you can tolerate and for the love of God stop smoking !!!! use the patch now, when people stop smoking, they gain weight!!! love ya, JOAN |
Dear Vicc -
I join completely with EVERYTHING Joan said. Just to add one thought: nicotine is a major vasal-constrictor, which is why it's implicated so much heart disease. You may want to give this point some consideration, in view of your knowledge of ischemia. There are a number of good prescription drugs out there right now that are used to get folks off tobacco, Wellbutrin is one of them, that you might want to consider using, if you have the opportunity. Take care and put on the pounds. Mike |
Good Luck!!!
Vicc,
Good luck with the Pump. I hope WC will agree & I hope it will work for you. A friend of mine just got a pump in Aug I believe it was & says it works like a dream. I just asked my doctor about it last week & he said he feels I am an excellent candidate for it. He has been waiting for me to bring it up. His question is whether I can get one for the lower body as that is where I need it, RSD in both feet & ankles, since I have had lumbar back surgery with fusion from L1 to L4. He said he would check on that. Like you I am tired of the side effects. All I seem to do is sleep anymore due to medication sedation. I have to force myself to get up every day. If I didn't I would sleep all day & all night I think. Then I would get nothing done at all. And man it would be good not to be a slave to taking medications. The biggest hangup will be where I have to go to have this done. Over in San Francisco. Hopefully the hospital would have a place for my hubby to stay. The hospitals in Sacramento do. It was really cheap, something like $10 a night when Jack had back surgery last winter. But anyway something could be worked out I am sure. Ah now I have quit smoking as of little over a week ago. My husband quit little over 2 months ago. And he is 64 & has smoked since he was a teenager. He had to quit or die of COPD. He is on two inhalers for COPD, but since he quit smoking, he hasn't couged in the morning when he wakes up at all. I never thought I would see the day he quit smoking. He was a hardcore smoker too. What is helping both of us is a new medication called Chantix. Our Medicare RX plans pay for it too. I didn't think they would since it is brandnew but they did. Ours is thru AARP. Also, I think I saw where someone else on the board has quit using Chantix also. I think I know who it was, but not going to say in case I am wrong. The above is just a suggestion. DebbyV |
Hi guys,
I just took a few days off from here just to think. I even made one day extra-special by treating myself to my favorite powdered coctail (with club soda chaser), and thought about what I expect in my future. Jose, it would be nice if you're right about anemia. I've had consults (by phone) with two nutritionists and discussed my weight loss and severely diminished energy with my pharmacist several times, and no one brought up the idea of anemia. My doc is dickering with w/c about the pump, so I called and asked him if he could talk them into paying for lab-work. Doesn't look good, but if they won't, I'll have the clinic do it after I get my SSDI. If something could restore my energy, I'd be much happier. I know, my friends, I should quit smoking. But I'm looking forward to suing the Marine Corps for making me start smoking (smokers smoked, non smokers cleaned up the area). I survived a childhood of juvenile delinquency without ever smoking tobacco, but after 3 days of boot camp I was a smoker. I could win. The real reason I'm not going to stop is simple: I don't need the stress. I decided a long time ago that I might have to decide when to die, and my "quality of life" will be a major factor; I don't need anything that could add to my discomfort. If I go without smoking and come out with no desire to start again, I won't smoke. I'm just not interested in making heroic efforts to quit. My weight has been a problem since the summer of '05, when I noticed I had dropped to 155 pounds; it became critical that Thanksgiving, after I had tried to eat more and learned I'd dropped to 139. It became an emergency a few months ago, when it dropped to 126. (I once weighed 220). Trying to gain weight is a pain in the ***, and the stomach. If my stomach isn't painfully distended, I'm losing weight. I don't really understand it, I have tripled the number of calories but not gaining weight. My wife cooks meals she knows I enjoy: Fried everything; lots of potatos and gravies. Owell, 134 is better than 126. And everybody in the family claims I got lost, but I didn't. I didn't know where I was, but I knew how to get where I was going, but the city kept making dead-end streeets. I'm glad it happened. I learned that I have mellowed in my old-age, in the past I have been known to rage at myself for simply making a wrong turn. We got to see places we would never have seen, we laughed a lot, and after we finally got on the right hiway, the radio was saying that the 1st off-ramp was still a parking lot...Vic |
Hi Vicc, nice to "see" you again. We've had the discussion of ways to gain weight before, in the medical marijuana thread, so I won't rehash it... except to say that although I have tried all the methods, and manage to maintain my current weight of 92 lbs, my main outcome has been an elevation of my triglycerides. I just wanted to let you know I totally understand not wanting to quit smoking. I started when I was 14, and have now smoked for 31 years. (I turned 45 on Oct. 1st, ack!) Michael wants to quit, and he can go right ahead if he wishes. But I have no desire to. The rsd has already taken away my ability to do all the crafts I used to do to keep my hands busy. I cannot imagine how crazy I would go if I quit smoking too, lol. I got lost in Kansas City when I was 18 and alone. I parked my car in front of a 7-11 to ask the cashier for directions back to the highway, and was shocked to discover I couldn't go inside the store! You had to use a drive-up teller sort of machine at a window. They may be common now in high-crime areas, but in 1979 it was unheard of. The cashier was giving me directions and telling me to go NOW when she looked over my shoulder and gasped. When I turned around, there were 5-6 young men actually sitting ON my car, just smiling... and smiling in a way that made me gulp. I couldn't see that I had any choice. I walked to my car with my head held high, and unlocked the door. They let me get in, astonished that I had the nerve. I locked the door, started the car up, and slowly began to back up. They remained on the hood and roof of my car till I exited the parking lot, then slid off. I have never been more scared, not even when my r.v. was getting searched by the border patrol as I left Mexico! ;) I sure hope everyones suggestions help, and the implant too. I'd love to hear that just ONE of us was feeling & doing better, and I can't think of a more deserving person than you. |
I'm Floored
Vic,
I am just astounded that neither your doc nor your nutritionist has even explored the possibility of your being anemic. There are many things that can cause or worsen anemia. Maybe one of the reasons that this hasn’t even been considered in your case is because you a male, and you have no noticeable blood loss. I know that sounds archaic, but as I said in my last post on the subject, I had such problems getting our docs to listen to me about Jay. The main reason that I could get from any of the health care workers that I took him to was “he is male”, and as I said he didn’t have anyplace that was visibly losing blood. Or that THEY could see, or would pay attention to me about. The only reason that they DID look into the problem was because of the nose bleeds that he started having (not in any way related to or caused by the anemia. They only helped to make it worse for him, though). But, HE WAS ALREADY ANEMIC BEFORE they started happening. So, I guess it was one of those “blessings in disguise” that the nose bleeds started, because THEN it gave the health care workers a reason to check into the anemia problem. Of course, they attributed it to the nose bleeds......but at that point I didn’t care. As long as someone was listening to me, and able to give me the help I needed in figuring out the right amount of iron to give my 2 year old son. I think that trying to introduce more iron into your diet, and doing the things to help allow your body to absorb it (like not drinking the caffeine before, during and after meals), would be good things for you to try and see if you can strat to get things turned around. I don’t know for sure that you ARE anemic, or that anemia is what is the cause of all of your weight loss issues, but I wouldn’t be at all surprised to find that because of your not being able to eat, and then trying to eat the high caloric, fatty, and fried foods in order to try to put some kind of weight back on, that you ARE anemic now. It just stands to reason....at least to me. (LOL..I am not at all sure that I got that last bit out right, so I hope that you can understand what I was trying to say there. LOLOL. Looks like it is going to be one of those days for me again!) I guess if you were female, you would have already had your iron levels tested, as that has been something that I have found that health care workers try to use as an explaination for fatigue and a host of other problems in women. I understand that just the differences in the male and female bodies make us women more prone to being anemic.....especially for women of a certian age. But, then, you have women like my Mom who are STILL anemic, even after having gone through menopause. As I said, I wouldn’t even try to presume to tell you to go and get some iron pills to supplement your iron intake, as iron is NOT anything to mess around with. Not enough iron in your system is bad, but too much can be fatal. It is not something like vitamin c, that you can just go and take butt loads of and call it good and not worry. Not in ANY way. But, I don’t think that taking a daily vitamin that has some iron added in would be a bad idea. I think that it might help....at least a little. Anemia causes fatigue...big time. You also don’t have to be underweight to be anemic. I can testify to that. In my opinion, it wouldn’t hurt ANYONE that has to take so many different medications daily to go and have their iron levels tested. There are so many things that can lower the iron levels (and other levels of things) in our blood...and Lord knows that just about everyone here takes multiple different kinds of medications that produce all kinds of different side effects. And, so may medications alter things, and interfere with things and with each other, that it is very hard to keep up with it all, all of the time. I mean, even things like Neurontin get interfered with, or interfere with others. I haven’t heard anyone talk about how you aren’t supposed to take things like Milk of Magnesia during a certain time period around Neurontin doses. I forget which interferes with the other, but if I remember correctly, it is the milk of magnesia (and other things of the same ilk) that interfere with Neurontin’s working like it should. Anyway, I hope that you are able to get your blood levels tested. I also hope that in the meantime, you will try some of the suggestions that I have written here, and see if you see any kind of improvement at all. Even just a lessening in the fatigue would be a great improvement, wouldn’t you say? As I said, I AM NOT saying go out and buy a bottle of iron pills and start scooping them down...THAT IS DANGEROUS! But, a vitamin with a little bit extra iron in it wouldn’t hurt things (unless you know for sure that you are one of the rare people that has TOO MUCH Iron.....but, that is very, very rare). You might talk all of this over with your pharmacist to get his/her idea and input on the subject, while you are waiting to see if you can get those labs done. Pharmacists are SOO Helpful! Anyway..I hope that you break was a good one. Glad that you are posting again. Love and :hug: Jose |
Hi Vicc,
I definetly agree with Jose, I would be checked for anemia.
I will say also, I deal with the CFS so it might be a thing of it's own. I don't remember if you were diagnosed with it but it could be that you have it also. It sounds like it was a good thing that you got lost. You most likely got to where you wanted to go quicker then others. I do hope you start feeling better soon. I know how rough you have had it for so long. You deserve some better days. Ada |
the pump & anemia
I too am anemic. It didn't stop the surgery for
my pump. There is so much to consider before you get a pump. I've emailed Debby about all this, it's too much to put here. If you PM me your email addy, I'll give you the details via email. I just may have your email anyway. Did you know it takes 6 mos to a year to get the pump dose correct and sometimes weekly doctor visits? They can't give you a high dose to start because you "could" stop breathing. Maybe morphine won't do it, I had to switch to Dilaudid after 2 months, due to morphine tolerance. Maybe you'll need to graduate to Fetanyl, but if you have an Excellent Doctor like mine, the time to pain relief goes faster. There is a forum to join and read & / or post questions, before ANYONE should get a pump. You can get 50-99% pain relief. And on that forum I spoke of, there are Many RSD folks who get a tremendous amount of relief, and back patients with leg pain do great. So I don't know where you got your stats that it doesn't work well for rsd. You can't tell that by the number of successes on the forum, and you'll find out there the questions to ask your doc pre-pump surgery and also how to make this surgery a Success. I'd never want to have mine taken from me. I should have had mine years ago. Darn work comp. Why take meds that don't even work when this is what I needed and should have had all along. I think Colleen has one (with Dilaudid) also. I'm not pushing the pump for everyone, maybe those who take meds and don't get the pain relief needed. I'll get off my podium now. :) Hope |
Vic,
Regarding the smoking....which by the way, I'm still doing it too!! Have you asked your doc for [I]Chantix[I]??? We've been selling alot of it as a stop smoking tool and it really seems to be working well, although one side-effect, pleasant to many, is extremely vivid dreams!! Sleep well my friend!! Diane |
I hope that you get the medication you need.
Regarding the smoking: I have heard that nicotine helps a lot, just give it a go and see how you can on. However I must warn you that some people get addicted to it. My grandad used to smoke and after suffering from an heart attack he suddenly stopped smoking and he's not touched a cigarette for years now. It take's a lot of effort to give in smoking and it will take a long time, so please be patient! Hope this helps Pain free hugs Alison P.S: Think about the damage that smoking is doing to you, I am sure that this will help to stop. |
smoking
Ya know after a certain age if smoking was gonna kill ya it would have. But my guess is there are probably far worse things to worry about than that. :winky:
|
Hi there again. Following up on Jose's comment, I was found to be moderately anemic, until my hematologist - whom I see for an unrelated issue - put me on Vit. B-12 (1,000 mcg./day) and then my level of hemoglobin suddenly shot up into the normal range. I also started putting on a little weight again, which in my case was a disappointment, but to each his own. Interestingly, the hematologist thought that all of the drugs that I'm on could have triggered the anemia in the first place.
So, yes. By all means get checked out for anemia. Mike |
[QUOTE=HopeLivesHere;157516][COLOR="Purple"][SIZE="3"]
Hi there, I noticed you said :- Did you know it takes 6 mos to a year to get the pump dose correct and sometimes weekly doctor visits? They can't give you a high dose to start because you "could" stop breathing. I must have been extremely lucky with mine as I took just 4 weeks to have my dose titrated to a level that afforded me the maximum amount of pain relief I could achieve.:) I was already very tolerant to many opiates so the fact that the dose was considerably less than I was having IM meant I had no problems with respiratory depression. I wouldn't be without mine even though I feel as though it is not working at all sometimes but the truth is that I am not sure just how bad it could be without it.:confused: It isn't for everyone for sure but the pump trials beforehand should establish that so that no surgery is undertaken unless there is proof it will be worthwhile. Take care Tayla:hug: |
That is great Tayla. I don't understand why it should take a year.
It only took 2 months for me. This must be because our doctors are not afraid to raise our doses until we get the relief we should have, or change the med over to one that is stronger. I belong to a forum where people are still in pain because their docs won't give them what they need. That is an important question to ask before ever getting a pump. Will they give increases until you reach good pain mgmt. Well, why in the world would they put the pump in us if they won't give us the dose we need for pain relief ??? But from what I read on that forum, sadly they do. I'd be kicking and screaming if I went through that surgery and I couldn't get relief because the doc is afraid to raise my dose or change to a stronger med. It is good news that both of us got relief so quickly. |
Quote:
So true HLH, These doctors should not be putting pumps in if they do not have the courage of their convictions and give adequate pain relief. The stupid thing is that most patients who have intrathecal pumps are NO strangers to narcotics and the dose they require via the pump is often far lower than what they took before:mad: I wish that everyone would get real about narcotics and chronic pain--we do not become addicted and becoming narcotised is rare---stupid, stupid people:rolleyes: Cheers Tayla:hug: |
physician pump practices
has anyone encountered a doctor who implanted a pump then refused to do follow up maitnance. the only reason i ask is because i have met a few docs from areas across the country who have had to deal with patients who have been dumped by other docs after implantation. it seems to be most prevelant in texas recently. apparently medicare in texas has changed their policy and they no longer cover the refills (or med changes). there seems to be some serious concern among docs (thats never good ;) ). just wondering if anyone has encountered follow up problems.
my first scs doc dumped my insurance not long after my implant and informed me i would have to pay $250 for office visits and pay out of pocket for any problems that required surgical intervention. needless to say i was exstatic when my pmd said she had found a better doc who was willing to take my insurance...a really good thing considering my second scs cost about $100,000+ just a heads up :) |
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