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TIM BOOTHBY

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"If voting changed anything, they'd make it illegal." - Mark Twain
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Fibromyalgia: When the lows go LOW...

Mon Feb 8, 2010 2:12 AM EST
health, fm, fibromyalgia, pain-management, chronic-illness, firness, fatugue
By Tim Boothby

When you feel like this, you're doing yourself and they whole world a favor when you nap till you feel human again.

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It's been kindly pointed out to me that I've been relatively quiet for some time now, so I thought there's no better way to break the writing fast than to share another insight about life with Fibromyalgia and how it's pretty intimately tied to my writing capability and capacity. I've written fairly extensively about FM here on the vine and my own site, so I'll spare everyone the replay and move on to current events and try not to make it sound too whiney.

Making a definitive list of symptoms for an FM patient is something akin to nailing jello to a tree, you may get the nail hammered in but the jello won't hang there long enough for you to appreciate the sight. It's a cyclical condition with highs and lows, on a really good high point you can almost feel 'normal,' while a really low point can leave you with no more energy than it takes to get out bed and not enough to keep you vertical for long. I've had two very low periods separated with a high that didn't even reach medium, which is why I've been fairly quiet lately.

Another change that is really odd is a switch in migraine symptoms from the standard migraine (painful) to a more subdued form that leaves you feeling off and screws with your vision. It really gets creative when I'm trying to read a computer monitor, you wind up trying to focus between little blobs of light. Adding to my ocular irregularities is my vision as a whole is changing, I have to take off my glasses to read fine print, so this adds a whole new field of specialist that I get to play lab rat for. Oh well, it seems like I wind up spending my time with new doctors explaining how FM really works, most have only read about it in texts and not dealt with it themselves.

Never has the phrase 'know your limitations,' been more important than to one with FM. You can push yourself, but a few days of doing that can leave you a wreck for a couple of weeks. Sometimes you get through the day with a couple of short periods of lying down and resting, other days you get up for short periods of activity between rests. Listen to your body, because if you don't after a while it'll quit listening to you and force you to do what it needs. There is nothing worse than wondering what people around you think of the time you have to spend horizontal while they run around living more normal lives, but the guilt you might feel is nothing compared the condition you'll put yourself into if you ignore what you need. A little guilt is nothing compared to incapacitating yourself.

You have no choice but to be sick, but you can do it intelligently and minimize your symptoms, sometimes a little and other times quite a bit. It takes discipline, and it takes you explaining your situation carefully to those around you. Learn all that you can about how FM affects you personally, and then take the time to educate your family and friends, and most especially your doctors. They may have the degree in medicine, but you should be the world's foremost expert on you.

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  • Public Discussion (59)
Tim Boothby

Listen to what your body is telling you, and try not to take it personally.

  • 4 votes
Reply#1 - Mon Feb 8, 2010 2:14 AM EST
USAF Vet-923294

Tim,

I hear you brother. Having a chronic condition can be as debilitating mentally as it is physically. Sorry to hear that you are suffering and hope that you have more high days then low. Take care of yourself and listen to your body.

Ben

  • 3 votes
Reply#2 - Mon Feb 8, 2010 2:25 AM EST
Tim Boothby

Having a chronic condition can be as debilitating mentally as it is physically.

Wearing is a good word, it wears on you physically and mentally, and wears on your last nerve, but talking about it actually helps.

  • 2 votes
#2.1 - Mon Feb 8, 2010 7:21 AM EST
USAF Vet-923294

Wearing is a good word, it wears on you physically and mentally, and wears on your last nerve, but talking about it actually helps.

Have to agree with you on that one. For me, it is hard to talk about mine. But I do get a lot of support from my family.

  • 2 votes
#2.2 - Mon Feb 8, 2010 1:10 PM EST
Tim Boothby

For me, it is hard to talk about mine.

The first piece I wrote about it I deleted once and unpubliched once and finally just left the damn thing alone and walked away for a couple of days. It got easier but still make me wince when I post the articles.

  • 2 votes
#2.3 - Mon Feb 8, 2010 5:46 PM EST
USAF Vet-923294

Know the feeling. At the urging of several friends, I post a three part article on some of the problems I went through. Didn't really address the disease or the associated problems, but I did feel better after I had. Still, it can be difficult to put yourself out there, but it just might help someone.

  • 2 votes
#2.4 - Mon Feb 8, 2010 5:57 PM EST
Ms. Crittenden

I too know just what you both mean. It is really hard to put yourself out there, but it could help other people.

  • 1 vote
#2.5 - Wed Feb 10, 2010 4:19 PM EST
Reply
rottlady

Tim, just know you are missed around here and we're pulling for you! I think you are doing a good thing writing about this terrible disease by educating any who reads your work. Keep on plugging away, I'm sorry about the lows and hope for more highs!

  • 2 votes
Reply#3 - Mon Feb 8, 2010 6:19 AM EST
Tim Boothby

Writing about it helps me keep my head on straight, and if others learn more about it too then that's gravy ;)

  • 2 votes
#3.1 - Mon Feb 8, 2010 7:22 AM EST
Reply
pcbynature

I met a vet who was turned town for a pension re this

  • 1 vote
Reply#4 - Mon Feb 8, 2010 6:48 AM EST
Tim Boothby

Tell that vet to go back to the VA, I don't know when he/she applied but the VA is a lot smarter about it that they were even a few years ago, there's a lot that goes into a VA disability determination, records and so forth, but you can keep going back if you disagree with their findings.

    #4.1 - Mon Feb 8, 2010 7:19 AM EST
    pcbynature

    yeah, I know. Doing it now in fact. Somehow they rate me with a GAF of 40 but say I am not unemployable, lol.

    • 1 vote
    #4.2 - Mon Feb 8, 2010 7:45 AM EST
    Tim Boothby

    Its too bad you can't get both sides together, "Either you need to tell them to classify me as disabled and pay off, or you need to tell them to hire me!"

      #4.3 - Mon Feb 8, 2010 7:50 AM EST
      pcbynature

      lol. My social worker says she has declared war on the VBA in Nashville/I should know somethin in 6 weeks!

      • 1 vote
      #4.4 - Mon Feb 8, 2010 8:04 AM EST
      Tim Boothby

      Excellent, you might also see what the DAV can do for you, they have a pretty good track record.

      • 2 votes
      #4.5 - Mon Feb 8, 2010 9:22 AM EST
      pcbynature

      ugh. used them before. My guy there is so old, it's time for hom to go. When I contacted the DAV in Nashville, I was hung up on. Won't ride that hoss agin, podnah

      • 1 vote
      #4.6 - Mon Feb 8, 2010 9:25 AM EST
      Tim Boothby

      That sucks, but much like the VA it can vary region to region or even by office, our state veteran's service office and DAV here are pretty good, but we have a pretty low population density.

      • 2 votes
      #4.7 - Mon Feb 8, 2010 9:35 AM EST
      pcbynature

      we are confuse about the VBA in Nashville. The supervisor for there for custodians actually called me up and cussed me out, then denied it when I reported hi. The DC office just said to contact him again (his workers had accessed my med file to turn down $ for a car)

      • 1 vote
      #4.8 - Mon Feb 8, 2010 9:43 AM EST
      Reply
      mstanley2265

      I had a Rheumatologist (spelled right?) tell me that his wife when pg, her toes would curl (cramp) under to her heel. I'd been trying to tell him what I was going thru. I giggled, he growled and gave me a prescription for depression. Duh! Didn't help one bit. So after that I just suffered through it. That was the early days of Fibro.

      Anyway, that should have given them a clue pg women have massive changes at times in hormones. Could be something. I did get over it because my granddaughter had RSV and as kids do shared the virus with me. After that I didn't have the Fibro, no more cramping, no more muscles trying to twist off of my bones, no more toes to heels things in the middle of the night or while living.

      A microbiologist friend and I were discussing how this sequence of events occurred. He thought that Fibro could be a bacterial infection and that the RSV virus attacked it to the point of eliminating it as one scenerio. I was just glad it was gone. And so far knock on wood hasn't reoccurred. I definately wouldn't recommendf getting the RSV virus, that was the worst, worse than the worst flu. The dang thing also reoccurred Spring and Fall for about 5 years. After that lessened as my hopefully immune system built up. I know exactely what you are feeling. You'd think by now that science would have come up with something to counteract the muscle cramps and related thingies but not on the radar as being top research money grants.

      • 1 vote
      Reply#5 - Mon Feb 8, 2010 9:27 AM EST
      Tim Boothby

      Anti-depressants are only effective in an overall treatment regimen, not by themselves. Lucky me I've had allergic reactions to all of the fancy new FM miracle drugs that have come out in the past few years, head to toe hives and itching are just a whole new problem that I'd just as soon live without.

      There is speculation of a viral or bacteriological cause I've seen in a few obscure studies, but so far there is a lot of guess work still going on, half the problem has been getting the medical profession to acknowledge it exists. Most do but there's still a few holdouts.

      I'm glad to hear your personal episode is over, but you're right I don't think I'd enjoy the 'cure.' ;)

        #5.1 - Mon Feb 8, 2010 9:40 AM EST
        pcbynature

        nti-depressants are only effective in an overall treatment regimen, not by themselves.

        Correc t! Of cousre. I have been w/o a psychologist since I fired mine at the VA (they refuse to give me another and I sometimes think they want me to commit suicide.

        • 1 vote
        #5.2 - Mon Feb 8, 2010 10:11 AM EST
        Tim Boothby

        How many VA facilities are in your area?

          #5.3 - Mon Feb 8, 2010 10:26 AM EST
          Reply
          River-239955

          My mother was out more than $20K in tests and specialists before she finally got her Fibro diagnosis. It's not caused by depression, but someone living with those limitations can sure get depressed at times. I have all the symptoms. So does my daughter. To get ourselves validated is another $40K that we don't have to hand over to doctors.

          • 2 votes
          Reply#6 - Mon Feb 8, 2010 9:32 AM EST
          pcbynature

          depression amplifies, cripples

          • 2 votes
          #6.1 - Mon Feb 8, 2010 9:33 AM EST
          Tim Boothby

          Depression is a real hazard to chronic problems, I have an anti-depressant in my chemical arsenal but its mainly for the times I'm in REALLY bad shape, the rest of the time I guess it probably does something but I only feel like I notice it when my overall condition drops to bad places.

          It took 7 years for me to finally get a diagnosis, and I hadn't heard of FM until the day I was diagnosed, which was shortly after I'd turned in my paperwork to start my one year countdown to retire from the Air Force. I got luck that I was diagnosed while still on active duty, it saved me a whole lot of case, but not very much in the pain in the ass department. I had to go through every test they could think of including cardiac cauterization before a you doctor just out of her internship connected the dots.

          • 3 votes
          #6.2 - Mon Feb 8, 2010 9:46 AM EST
          River-239955

          Add sciatica to that, and a girl can let God know just real quick like that he's not nearly as kind and loving as he says he is.

          :)

          • 2 votes
          #6.3 - Mon Feb 8, 2010 9:47 AM EST
          Reply
          Tim Boothby

          I have enough lower back problems with arthritis to add sciatica to the mix... no fun at all and also not easy to treat effectively.

          • 2 votes
          Reply#7 - Mon Feb 8, 2010 9:54 AM EST
          River-239955

          It's pretty frikking evil..... I have learned through the years, especially in the last 4 or 5, that my body can be somewhat fragile, and any extra activity or over-exertion can easily land me flat of my back for more than a week.

          Just last spring I bent wrong to get clothes out of the clothes dryer, and spent 3 full weeks trying to recover, with no muscle relaxers and no narcotics and no valiums. There were days that I absolutely could not walk to the bathroom, but did manage to crawl or drag myself. I took ibuprofen by the handful (as many as 8 at a time) to take the edge off the pain, and that's just about all it did. I didn't curse God during it all, but we did talk a lot, and I did ask him just what in the hell he thought he was doing.

          I don't have thousands upon thousands of dollars for tests and specialists. Every penny that comes into my home is what we have to keep us alive and keep my daughter in college. It would defeat our lifes' purposes to sacrifice the future just for the sake of staying alive without the dreams that drive us.

          • 2 votes
          #7.1 - Mon Feb 8, 2010 10:19 AM EST
          pcbynature

          I took ibuprofen by the handful (as many as 8 at a time)

          That would have been right for me if they were 1000mg. I finally got morphine and percoset. Than last month, someone wrote a memo and cut my meds in half. When I complained my doc dais he didn't have time toi listen to me and had a guard called on me. I don't have that doc anymore...

          • 1 vote
          #7.2 - Mon Feb 8, 2010 10:23 AM EST
          Tim Boothby

          I try and stick to Tykenol Arthritis for most things, but I have muscle relaxers for those times its more than the Tylenol can handle. Once it was obvious I didn't tolerate the anti-fm drugs my options became limited.

            #7.3 - Mon Feb 8, 2010 10:28 AM EST
            pcbynature

            Yeah I got muscle relaxers but you know what I want for bad days and they WILL NOT give? Valium, not even 2 mg

            • 1 vote
            #7.4 - Mon Feb 8, 2010 10:36 AM EST
            Tim Boothby

            Its been over 20 years since I had a valium, so no idea if it would help with symptoms or not.

              #7.5 - Mon Feb 8, 2010 12:06 PM EST
              Grammar-phobe

              Tim, be careful with Tylenol. If you drink at all then it's even more important to stay away from Tylenol. My father was a non-drinker. He had diabetes and had a couple of amputations. He took Tylenol with codeine for a long time. He got cirrhosis of the liver caused by the Tylenol. Ibuprofen is much safer.

              • 1 vote
              #7.6 - Mon Feb 8, 2010 12:51 PM EST
              Tim Boothby

              I keep a pretty good eye on the tylenol, and I don't drink often. Fortunately I have liver function tests quite a bit to help keep an eye on things. Ibuprofin doesn't get along with other meds I take and naprocyn rips my stomach apart, so my choices get a bit limited. My primary form of pain control is a hot soak with epsom salts, gives much better results that anything I can take ;)

              • 2 votes
              #7.7 - Mon Feb 8, 2010 5:50 PM EST
              mori

              hey Tim, don't know if this is the place or time, or, that you've actually tried it. But, I've suggested NAC (N-acetylcystine) at about 3 grams a day for my fibromyalgia patients. Within a few days it's better, usually gone within a few months. NAC addresses a neuropeptide "substance P", which, some say is the definitive marker for "true" fibro....

              I also have gotten relief with NAC. Developed an almost bruisie pain in my forarms two years past my back surgery. After trying many different things, I stumbled on NAC and within a few days noticed a difference. It's two years later and have not felt this good in many years.

              • 2 votes
              #7.8 - Mon Feb 8, 2010 11:32 PM EST
              Tim Boothby

              Tried it, started to help clear up a bronchial infection and heard it had offered help to some in trials, but after I'd cleared all of the lung butter I noticed no other effects and stopped taking it after about a month.

                #7.9 - Mon Feb 8, 2010 11:45 PM EST
                Ms. Crittenden

                I too depend most on a hot bath, but in the summer I also find it very helpful to go from the hot sun into a cold pool and then back into the hot sun again several times. Nothing helps so much as that. In the winter I also take vitamin D. It's really important to get enough vitamin D when you have an immune disorder. I never thought about epsom salts and what that might do. I will try it, thanks.

                • 1 vote
                #7.10 - Wed Feb 10, 2010 3:55 PM EST
                Reply
                mstanley2265

                From all the things I researched the condition seems to be hormonal/bacterial/maybe viral. It seems to be a combination of attacks on the body. Then there's a group that thinks it's environmental/food. Take your pick. Then layer the emotional/mental on top and you really get a mess. You never know how sick you are until you start feeling better. Be careful of the meds because of the side effects and the damage that can be done. Read those fine print thingies carefully and don't overdose on anything.

                Muscle fatigue from the cramping/spasms seems to be the worst of Fibro. It depletes the muscles of needed blood supply and nutrients. The resulting fatigue affects the mind because the body is carrying the brain around. Simplistic explanation :) but very true. You always have to look at the big picture and the correlation between the two. A pill doesn't always help to resync the two. Keep surfing the net for any help that may be out there but beware the scams.

                • 2 votes
                Reply#8 - Mon Feb 8, 2010 11:15 AM EST
                River-239955

                I do notice an amazing difference in myself when I eat better, although I don't think the condition is caused by food itself. Reaching for the things we know are healthy really does make a difference in day to day life.

                • 2 votes
                #8.1 - Mon Feb 8, 2010 11:20 AM EST
                Tim Boothby

                Food can affect some parts of FM (there's roughly 30 conditions that are part of the symptoms of FM,) especially IBS, tomatoes really set that off.

                • 2 votes
                #8.2 - Mon Feb 8, 2010 12:08 PM EST
                River-239955

                Fresh foods, or foods that are not over-processed leave me feeling much, much better. My favorites are tuna (white albacore), cucumbers, watermelon, peaches, pecans, walnuts, cashews, tangerines, apples, black globe grapes, red cabbage, carrot sticks...... I try to work at least one meal a day from various combinations of these, and when I can manage it, even more. I do tend to add an ounce of cheese to my plate, as a consolation prize. :)

                • 2 votes
                #8.3 - Mon Feb 8, 2010 1:20 PM EST
                Tim Boothby

                I tend to eat simply, meaning that I can recognize everything on my plate lol

                I like fresh veggies and beef or chicken, but tuna sammiches are definately no stranger here, and I like good hard cheese, I avoid the processed yellow stuff that is often called cheese.

                You can find one of my favorite meals here, my own recipe.

                • 2 votes
                #8.4 - Mon Feb 8, 2010 6:06 PM EST
                River-239955

                The link won't open for me this morning, so I'll have to have a look later.

                By tuna sammiches, do you mean stuff that is drowned in mayo, onion, and pickle, all stirred up, and then put on bread? Noooo....not me... I eat my tuna straight from the can, and try to stay away from bread altogether. It is empty calories, and I try to keep my weight down. (Less mishaps/episodes when I keep my weight down.)

                We eat cheddar, provolone, asiago, parmesan, and mozerella here, and we eat lots of it.

                • 2 votes
                #8.5 - Tue Feb 9, 2010 11:12 AM EST
                Tim Boothby

                Yup, drowned in all of that good stuff and slapped on bread. Preferably pumpernickel. Just about any kind of cheese works for me.

                • 2 votes
                #8.6 - Tue Feb 9, 2010 12:37 PM EST
                Reply
                Grammar-phobe

                All my love goes out to you! I'm so glad to see you back and writing. It sure sounds like you've been going through hell with this.

                **hugs**

                Terrie

                • 1 vote
                Reply#9 - Mon Feb 8, 2010 12:53 PM EST
                mstanley2265

                ps thingy if swallowing becomes difficult teach yourself to hold your breath and then swallow, the air intake does something that makes it more difficult to swallow. also, you can eat softer foods, ie boiled pureed until it passes. keep the nutrients flowing tho, it worked for me when I was having a "bad spell".

                • 1 vote
                Reply#10 - Mon Feb 8, 2010 1:33 PM EST
                Tim Boothby

                Tiny bites seems to do the trick for me, and for some reason tea helps my throat.

                • 2 votes
                #10.1 - Mon Feb 8, 2010 6:11 PM EST
                Reply
                Ms. Crittenden

                I was going to doctor after doctor for 15 years. First I was being told I had IBS....and herpes because of genital lesions, even though my tests were all negative for herpes and I was only 16 and never been sexually active at that point. It was a crushing blow and I couldn't figure out how it was possible. For years I testsed negative for all STD's, but the doctors kept insisting there was nothing else it could possibly be other than herpes.

                Anyways it is really hard to fight for answers when you are feeling so bad and everyone keeps telling you it is depression, add to that the money, the long drives, and your family and friends that can't understand, so you do everything in your power and beyond to try to be "normal". After awhile you realize many doctors are just trying to take your money, and they have alrready summed you up for a drug addict or mental case, and you have to prove them wrong. Then finally one day a special doctor finally listens and take a look at your mountain of medical records. I was diagnosed with Fibro, Interstitial Cystitis, Endometrisosis, and Chronic fatigue Syndrome, Epi-scleritis, Degenerative Disk Disorder, etc, etc, and the one day I just so happen to bring up gential sores to a GI specialist, and he mentioned Behcet's Syndrome to me. It opened a whole new door. It doesn't mean that would be the answer for any of you, but it could mean that there is some sort of common thread between these illnesses. I've done a lot of research on Behcet's, and there is a lot to know that I can't tell you in one post. (Today is a very rare good day for me), But what I can tell you is that they cannot find a genetic link between people in the U.S. who have it. They believe people who have it in the U.S. had something wrong with their immune system, and then they may have gotten an infection. Two infections they are looking at are herpes 1 (the one that causes cold sores), and the strep throat infection because many people with it had multiple strep throat infections prior to other symptoms. To make it even more complicated to diagnose, not everyone with Behcet's will have gential lesions, or any of the other various symptoms, and symptoms often show up years apart. The one most common symptom is canker sores in the mouth atleast three times per year.

                All I can say is I wish everyone the very best, but keep looking for more answers and a cure. You need to know what exactly caused your illness, and doctors need to figure out how to cure it, or pervent it from happening to other people. Strong pain medicine may be helpful at times, but it also has very serious negative effects. The objective is to get better, don't give up.

                • 2 votes
                Reply#11 - Mon Feb 8, 2010 1:44 PM EST
                Tim Boothby

                I half-jokingly tell people that the reason that the military has gotten better at identifying FN is because they don't want to acknowledge Gulf War Syndrome ;)

                What finally paid off for me was sitting down with a doctor and explaining that I thought we were taking all of my symptoms individually and we needed to look at them as a whole (my wife's idea) and that led to a lot of tests and finally a diagnosis. Very meticulous medical records help a lot at this point.

                • 2 votes
                #11.1 - Mon Feb 8, 2010 6:15 PM EST
                Ms. Crittenden

                It's the same reason Polio was cured, but all of a sudden we had 50 new diagnosis for aliments that all could have just as easily described Polio symptoms perfectly. The mistake to be covered, live Polio virus in the vaccine turned out to cause Polio, a disease that normally would only effect people living is poor conditions. Still, there was a need to cover up the mistake because vaccines save many people from many other things, once they learned not to use live virus again. Live and learn I guess.

                Your wife is absolutely right. Fibro says you have nerve damage, but what caused it?

                Have you ever heard of Reactive Arthritis (Reiter's Syndrome)? It can be caused by food poisoning, even if you can't recall ever having had food poisoning. The reason I bring it up is because of the stomach issues, even though that can also very well be associated with Fibro, whatever Fibro really is, I wish they knew more, but atleast having the diagnosis helps explain your symptoms to people.

                  #11.2 - Wed Feb 10, 2010 3:48 PM EST
                  Ms. Crittenden

                  Reactive Arthritis also goes after the lower back...and any or all the joints along with Fibro (nerve damage, muscle pain). There is no test to confirm it.

                    #11.3 - Wed Feb 10, 2010 4:21 PM EST
                    Tim Boothby

                    Its the no test to prove it that always irritates me, fortunately for me at least they were able to confirm arthritis in my spine by x-ray.

                      #11.4 - Wed Feb 10, 2010 10:59 PM EST
                      Reply
                      Grammar-phobe

                      Hey Tim, what's the address of your website?

                      • 1 vote
                      Reply#12 - Mon Feb 8, 2010 4:06 PM EST
                      Tim Boothby

                      Hey Tim, what's the address of your website?

                      It's on my profile, the first blog. I don't include it in articles or posts to avoid self-promotion.

                        #12.1 - Mon Feb 8, 2010 6:26 PM EST
                        Grammar-phobe

                        Thanks, I'll look again

                        • 1 vote
                        #12.2 - Mon Feb 8, 2010 6:37 PM EST
                        Reply
                        LifeTravler

                        Darling, all I can say is I hope you get to feeling better soon. It just plain old sucks to be sick with anything.

                        • 2 votes
                        Reply#13 - Tue Feb 9, 2010 2:00 AM EST
                        Tim Boothby

                        *blush stammer* Thanks!

                        • 2 votes
                        #13.1 - Tue Feb 9, 2010 2:45 AM EST
                        Reply
                        Soosalah

                        Tim,

                        Perhaps we can compare notes, one day. I agree it is vital we keep our own doctors informed.

                        Good luck to you.

                        Susan

                          Reply#14 - Tue Feb 9, 2010 6:21 PM EST
                          Tim Boothby

                          Sure!

                            #14.1 - Tue Feb 9, 2010 6:32 PM EST
                            Reply
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