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Hospitals and Long Term Treatment: Chronic illness thread

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    PaladinPaladin Registered User regular
    Duloxetine is a medication that does double duty to address mood problems and neuropathic pain. Any druflg that addresses the latter will be hard to discontinue, since the brain and nerves adjust to the calming effects through neuroplasticity, so they will then have to unlearn the medication once it's taken away.

    There are nonpharmacologic mechanisms to help graduate from withdrawal induced parasthesias depending on the symptom, most of which are known by physical or occupational therapists. If you're taking it for neuropathic pain and not just mood, there are other medications less likely to be discontinued by insurance, but they carry their own side effects.

    Marty: The future, it's where you're going?
    Doc: That's right, twenty five years into the future. I've always dreamed on seeing the future, looking beyond my years, seeing the progress of mankind. I'll also be able to see who wins the next twenty-five world series.
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    cabsycabsy the fattest rainbow unicorn Registered User regular
    When I was put on it I was put on it solely because "that's all we will offer you to treat ADHD," and then the last seven years have been various attempts to switch off of it or discontinue it. I had some mild anxiety symptoms prior to going on it but nothing I had been on a long-term SSRI or SNRI for; my attempts to quit smoking all involved bupropion and they all made me have extreme negative reactions, though I did successfully quit smoking and did not actually kill or assault anyone, so a win there. I think meds are a great option for a lot of people, and my partner is on both duloxetine and bupropion! it's just EXTREMELY frustrating that something I have so many negative side effects from is something that shouldn't have been a first line treatment to begin with when I have well-documented ADHD, and especially because "well stimulants are bad" thanks Jan I've spent seven years hoping that someday I would have a sex drive again, or feel joy

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    Munkus BeaverMunkus Beaver You don't have to attend every argument you are invited to. Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPA regular
    I hated duloxetine and like you was prescribed it before shit like Prozac (which actually works for me!) and was extremely frustrating getting off it. I feel you, Cabsy, and I hope you can get on the other side of this.

    Humor can be dissected as a frog can, but dies in the process.
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    valhalla130valhalla130 13 Dark Shield Perceives the GodsRegistered User regular
    Chronic illness thread... My neck has had issues for years. I had a diskectomy and fusion in 2007 on one herniated disk and had another the doc never mentioned until months after my surgery. For the last couple years, my lower back has been progressively feeling worse to the point I can't really stand or walk for more than 5 minutes. Two weeks ago I had MRI's done on my lumbar and cervical spine (lower back and neck) and went to the doc this last week about it.

    Most of the disks are bulging. One in my lower back has slipped forward. I have a congenital defect where my spinal canal (where the spinal cord sits, is narrowed, and they even noticed some issues with the last two disks of my thoracic spine, so in a couple weeks, I have another MRI. I am going to a pain management clinic and they're going to be giving me epidurals to help. and all my issues with not feeling as strong as I used to in my legs and arms, not being able to lift weights, the tingling in my upper thighs, the numbness in my legs and arms, having trouble standing and navigating stairs, the lack of sleep due to pain... All this makes sense now.

    I feel... inadequate. The doc wants to do surgery on my lower back and neck, and that would mean I would be out of work for a significant amount of time that I cannot afford. Luckily, the VA would be covering it. But still... I have bills to pay. I don't know what I should do.

    Sorry to dump all this here. I just really have no one in real life to talk to.

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    Munkus BeaverMunkus Beaver You don't have to attend every argument you are invited to. Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPA regular
    edited September 2022
    Does VA not help provide for bills while you are unable to work? Do you have any other supplemental insurance?

    Edit: Val, lemme know what state you’re in. I have family that works for a nonprofit that helps ex-military get employed, someone there might know of an org in your state that can help with this.
    Edit2: I don’t want to get your hopes unnecessarily up, just that I will pass this along and hope something comes out of it.

    Munkus Beaver on
    Humor can be dissected as a frog can, but dies in the process.
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    valhalla130valhalla130 13 Dark Shield Perceives the GodsRegistered User regular
    I am employed. I will just be on unpaid FMLA while I'm recuperating. And no, the VA doesn't help with bills. I only did 4 years, and I'm honestly surprised the VA considers this service related. They did diagnose me with either degenerative arthritis or musculo-skeletal degeneration (I've seen both in notes.) So I guess it counts, even though they tried to skip out on the originating accident (Bradley hatch fell on my head while I was sitting in a driver's seat.) When I presented to the medics, they laughed me off saying they didn't see anything wrong with me. When I got out, the VA diagnosed me with that, so I guess it counts. Good thing, too.

    I am looking to increase my disability rating though, so more money may be coming in soon.

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    WeaverWeaver Who are you? What do you want?Registered User regular
    That sucks Val. Went in appointments to get a rating adjustment back in June, still waiting for a decision.

    Also going in for an ALIF surgery at my L5-S1 on Thursday.

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    valhalla130valhalla130 13 Dark Shield Perceives the GodsRegistered User regular
    Thanks and good luck

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    StericaSterica Yes Registered User, Moderator mod
    ADHD Online, just fyi, is a huge scam but my only option given everyone else either won’t take my insurance or diagnosis adults.

    So have the followup meeting and they give me three months refill to see how the new dosage works. But the refill doesn’t just happen when I put in the request at my pharmacy. They want me to call in each month to refill, which is not how fucking refills work. And I wasn’t fucking told to call them during the meeting. So reach out to complain, and they tell me I need another meeting for another refill. Which is $99 to do jack shit because point of the meeting is to see how I’m doing after three months on the new dosage. Which I don’t fucking have.

    So transparently trying to drain every last cent,

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    WeaverWeaver Who are you? What do you want?Registered User regular
    Mainly been posting about it in D&D, but surgery went really well.

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    WeaverWeaver Who are you? What do you want?Registered User regular
    Recovering remarkably well, getting discharged today.

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    JokermanJokerman Everything EverywhereRegistered User regular
    Quid wrote: »
    I'm developing essential tremors in my hands

    At 37

    *sigh*

    I've had Essential Tremor my entire life! Welcome friend! Welcome to the brotherhood.

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    QuidQuid Definitely not a banana Registered User regular
    edited October 2022
    Week one of shooting my brain with high powered magnets.

    This is so much more boring than I make it out to be.

    Quid on
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    MillMill Registered User regular
    Well things seem to be getting better now that I'm back on regular remicade treatments. I've now gotten two in without any interruptions and up to four back to back ones now. If the early BS hadn't put things off in a way that resulted in a gap of a few weeks between the 2nd and 3rd infusion, I'd probably be in even better shape. Seems to be helping the left eye as well. It sounds like I'll have to get some form of laser surgery done on that eye to fix some of the vision loss, but most of it is from it being inflamed, but it still looks like there hasn't been any real permanent vision loss from it being inflamed for so long.

    Also looks like I'm clear of my kidney stone. Had the last of removed with lasers and will find out next month if any of it is still in my kidney or if it all got evacuated once it bot cut down to a ton of small pieces. I guess the upside to this is that I've finally managed to stop drinking soda, which will be good for keeping the grocery budget low. Sure juice costs money, but not nearly as much as soda. Can get pretty good quality brands for a little more than it would cost me to get store brand soda. Also got to learn just how bad my preferred sodas are for me, mainly colas. It's not just the sugar and caffeine, but the whole package as well.

    Now I just got to work physical therapy in and try getting back into the workforce at this point, while hoping that medical science finds new ways to solve some of the issues that I have work around. Mainly a safe way to reverse some of the joint fusing that I have. Also as an added bonus, my infusion center was doing flu shots, so that's out of the way. Just got to squeeze the covid booster in during the two week window I have for getting shots like that done and hope I can squeeze shingles vaccine in, assuming the docs can get the paperwork in for that.

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    QuidQuid Definitely not a banana Registered User regular
    After about five weeks of magnets I was shown one of my brain scans and the graphs indicate what the doctor tells me is increased activity in parts of my brain.

    I still remain skeptical.

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    valhalla130valhalla130 13 Dark Shield Perceives the GodsRegistered User regular
    Went back to the brain and spine specialist this last Monday to get the reading of the last MRI on my thoracic spine, and yep, more bulging and herniated discs. This brings the total I need replaced and fused up to 13. 4 in my cervical spine, 4 in my thoracic spine, and 5 in my lumbar spine. I can barely walk at this point any distance. Sitting down and standing up hurts the most, and just relaxing my lower back hurts.

    Tuesday I had a cervical epidural and it helped for about 2 days, same as the lumbar one did. This Tuesday, I'm going for my first ablation, so hopefully, that helps more..

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    valhalla130valhalla130 13 Dark Shield Perceives the GodsRegistered User regular

    Okay... things have happened quuck. (-ish.)

    On 11/3rd, I went for a radio frequency ablation, to burn part of the pain nerve in my lower back, to potentially put off surgery for a year. I was supposed to take it easy for a few days, and they said I could hurt more during those few days before it eased off.

    Well, the very next day, my 72 year old mom went into the ER and was admitted for atrial fibrillation, and I spent the whole day driving to and from the hospital and walking quite a bit. Thursday, I woke up in excruciating pain and couldn't even go to the restroom with crying uncontrollably.

    So I had to call the ambulance to pick me up, they dosed me with ketamine to get me on a backboard, then the 2 paramedics and 5 firefighters got me into an ambulance while I came down from my horrifying crossing into another dimension of death experience.

    From that Thursday until this last Saturday, I had to go thru MRI's (turns out I'm claustrophobic and subject to panic attacks?) and then wait for my surgery. Doc performed it on Saturday since it would take longer than normal. He replaced 8 disks in my thoracic to lumbar spine..

    The numbness and pain in my lower back and legs is completely gone. All I have now is the pain from the incision , and I was released home two days ago. (Pooping is no joke and I think I hurt myself trying before I finally let my mother give me an enema. Geez, the indignities.)

    So, now I have about a 12 week recuperation period before I can do normal things. Supposedly, I can return to work after 6 1/2 weeks, but I can't bend , rotate my waist or spine, or stretch at all for 12 weeks. Don't know how I'm gonna sit in crappy chairs forn12 hours a night while I'm still recovering.

    Anyway, pitcure with the gauze on, and one without, but still has some barrier we aren't supposed to remove. It's just to show how long the incision is.
    3i4nntwgck9i.jpg
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    Tldr: had back surgery

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    webguy20webguy20 I spend too much time on the Internet Registered User regular
    edited November 2022
    Awesoming for feeling better after the surgery. :BRO: for everything else.


    In news for me, had my follow up CT scan to check out the mass they found in my neck (but can't biospy without opening me up) back when I had a CT scan for my blood clots. Happily it seems to be a benign mass and it hasn't changed at all in the last 6 months, and since it isn't causing me any issues the current plan is just to get a CT scan every 6 months for the next 10 years or so and make sure nothing changes.

    Currently my pulmonologist and regular doc are arguing about whether I need to be on blood thinners permanently. My pulmonologist wants permanent since we don't have a cause for my blood clots, and my regular doc wants me off them for the obvious reasons. They've come to an agreement to have me on them until next May and then review, one year after the clots were removed. Fun times.

    webguy20 on
    Steam ID: Webguy20
    Origin ID: Discgolfer27
    Untappd ID: Discgolfer1981
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    valhalla130valhalla130 13 Dark Shield Perceives the GodsRegistered User regular
    Awesome for the mass being benign.

    In my news, I was completely wrong. Doc didn't replace 8 discs in my back at all. They did something called a laminotomy, or two, where the put a hole in the back of my spine to relieve pressure,, and make sure the spinal cord wasn't being impinged. Then they put something over it to induce scar tissue to form.

    I guess this is the less invasive thing they do now than in 2007 when I had a disc replaced in my neck for the same thing?

    Still, no pain that I had before, and only pain when I bend my spine. Which they told me not to do if I could help it. It's real hard to remember every minute of the day not to do something the same way you have for decades, though.

    asxcjbppb2eo.jpg
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    WeaverWeaver Who are you? What do you want?Registered User regular
    Valhalla, so glad you've gotten some much needed pain relief.

    I had some complications post surgery, not with the actual fusion, but nerve pain in my left leg from the nerve roots that had been compressed for over twenty years suddenly having that pressure relieved. Combination of nerve pain and at the time unrecognized shingles infection (my sixth one! and I'm vaccinated!) in my lower leg & ankle landed me in the ER with 10 out of 10 pain flop sweats dark thoughts mode. So between nerve blockers, anti-virals, pain, sleep-aids, I've been taking upwards of 21 pills a day for the last couple months while the nerves in my leg heal their myelin sheaths.

    I've just started down-tapering the nerve blockers now, to see if they're still needed and also to avoid withdrawal effects. Pain has gone from "It's not even my favorite leg, just take it off" to me being able to start moving around short distances without my cane. With not having been able to exercise since the end of June, I've also lost some stability in my left knee, which has been injured multiple times earlier in life, so stairs are still rough and even with the cane can't walk long distances, but I've started physical therapy and hoping to start being able to do some light exercises soon to get that stability back and also shed the thirty pounds I've gained.

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    Satanic JesusSatanic Jesus Hi, I'm Liam! with broken glassesRegistered User regular
    Since I got out of hospital, I've been without a medicine called semaglutide (I left before Halloween), and I finally was able to get it today. I was stressing out so much about this, as it's not covered by my medical card (which covers my other medical stuff), it costs 200 each time which I can't afford, but a social worker helped fill out a hardship form and I finally have my medication.

    my backloggery 3DS: 0533-5338-5186 steam: porcelain_cow goodreads
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    TallahasseerielTallahasseeriel Registered User regular
    3 weeks until my mom's open heart surgery and the lack of anyone nearby to just comfort me through my anxiety attacks over it is really starting to get to me.

    I dunno what if anything I can do the day of. I'll probably have a stroke from the stress.

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    ShadowfireShadowfire Vermont, in the middle of nowhereRegistered User regular
    3 weeks until my mom's open heart surgery and the lack of anyone nearby to just comfort me through my anxiety attacks over it is really starting to get to me.

    I dunno what if anything I can do the day of. I'll probably have a stroke from the stress.

    I know we're not there with you, but we're here. And if you need someone to text with or whatever, shoot me a PM and I'll send you my number.

    WiiU: Windrunner ; Guild Wars 2: Shadowfire.3940 ; PSN: Bradcopter
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    valhalla130valhalla130 13 Dark Shield Perceives the GodsRegistered User regular
    Several months later and I'm better, but the PA said I will probably have some issues for about a year. My lower right leg is still numb, like it feels as if it was falling asleep and is still trying to wake up. He said that's from the nerves they cut healing back together.

    I have a hump. Turns out, I found out more about what they did, and they actually removed the spinal processes (the bones that jut out from your vertebrae, like spines) in two sections. So the "hump" is just where my spine is still normal. They removed them because due to my advanced arthritis, and excess bone growth, they were pinching nerves every time I bent my spine in a direction. Looks weird though. I feel a lot better, and returned to work this weekend. I still can't walk a lot, and that was supposed to be my main form of exercise and rehab. But I'll get stronger.
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    JedocJedoc In the scuppers with the staggers and jagsRegistered User regular
    Good god, man. Sorry you had to get spatchcocked like that, glad to hear you're on the way back up again.

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    Munkus BeaverMunkus Beaver You don't have to attend every argument you are invited to. Philosophy: Stoicism. Politics: Democratic SocialistRegistered User, ClubPA regular
    Does anyone have decent experience with prozac? I've been having some depression issues lately and I'm wondering if I need to go up on the dosage slightly. I've been taking it for about 3 years now.

    Humor can be dissected as a frog can, but dies in the process.
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    DixonDixon Screwed...possibly doomed CanadaRegistered User regular
    No experience with Prozac.

    I'm curious though, anyone have experience with Mirtazapine?

    I've been on for 7 years, been very slowly weening down the dosage over years. Anyone ever done the same with the meds?

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    furlionfurlion Riskbreaker Lea MondeRegistered User regular
    Mirtazapine made me sleepy as hell. Couldn't stay on it long enough to see if it actually worked.

    sig.gif Gamertag: KL Retribution
    PSN:Furlion
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    SorceSorce Not ThereRegistered User regular
    Does anyone have decent experience with prozac? I've been having some depression issues lately and I'm wondering if I need to go up on the dosage slightly. I've been taking it for about 3 years now.
    I'm on it, works for me!

    I mean, I still hate myself, but less so.

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    ShadowfireShadowfire Vermont, in the middle of nowhereRegistered User regular
    furlion wrote: »
    Mirtazapine made me sleepy as hell. Couldn't stay on it long enough to see if it actually worked.

    That's what prozac did to me. I'd fall asleep, not be able to wake up for like twelve hours or more, and still be tired.

    Antidepressants are annoying like that! You have to keep trying different ones to find the ones that work for you.

    WiiU: Windrunner ; Guild Wars 2: Shadowfire.3940 ; PSN: Bradcopter
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    furlionfurlion Riskbreaker Lea MondeRegistered User regular
    Shadowfire wrote: »
    furlion wrote: »
    Mirtazapine made me sleepy as hell. Couldn't stay on it long enough to see if it actually worked.

    That's what prozac did to me. I'd fall asleep, not be able to wake up for like twelve hours or more, and still be tired.

    Antidepressants are annoying like that! You have to keep trying different ones to find the ones that work for you.

    In the 11 years since my depression really started I have been on 14 different antidepressants and mood stabilizers. None of them really worked for me. Going to try ketamine treatments as soon as I can get into an office that does them.

    sig.gif Gamertag: KL Retribution
    PSN:Furlion
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    DixonDixon Screwed...possibly doomed CanadaRegistered User regular
    Yeah the Mirt sleepiness was a big thing for the first two weeks. I felt like I was in a daze 24/7.

    It evened out eventually. I was really underweight with the anxiety though, like 130lbs back when I started. I remember I gained about 40lbs in the first 6 months just being able to eat normally for the first time ever.

    I'm down to 7.5mg a day now, which I think will be the last step before completely stopping.

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    BahamutZEROBahamutZERO Registered User regular
    I tried so many antidepressants back in the day, before the insurance ran out. They didn't really feel like they helped me much or at all, and often had nasty side effects either way. Nowadays I just fail to cope at all! It's a lot cheaper and life is still hell!

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    furlionfurlion Riskbreaker Lea MondeRegistered User regular
    I tried so many antidepressants back in the day, before the insurance ran out. They didn't really feel like they helped me much or at all, and often had nasty side effects either way. Nowadays I just fail to cope at all! It's a lot cheaper and life is still hell!

    There are newer treatment methods. I tried tem's at home and it didn't really do anything. Next up is ketamine. If that doesn't work maybe micro dosing shrooms. Changing jobs made me much less suicidal but the depression still hits pretty hard.

    sig.gif Gamertag: KL Retribution
    PSN:Furlion
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    Jr.Jr. Registered User regular
    i take seroquel and I do not like it due to it making me so tired i have to take it though

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    Jr.Jr. Registered User regular
    don't get me wrong i do not like it for multiple reasons but i do not like being tired and hungry

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    webguy20webguy20 I spend too much time on the Internet Registered User regular
    Just got my CPAP. Why the hell does it use a cell connection and not wifi? I suppose its so old people don't have to set it up on their wifi network even if they have access to one, but it really sucks when you're a person who lives out in the sticks without cell service!

    Steam ID: Webguy20
    Origin ID: Discgolfer27
    Untappd ID: Discgolfer1981
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    ShadowfireShadowfire Vermont, in the middle of nowhereRegistered User regular
    webguy20 wrote: »
    Just got my CPAP. Why the hell does it use a cell connection and not wifi? I suppose its so old people don't have to set it up on their wifi network even if they have access to one, but it really sucks when you're a person who lives out in the sticks without cell service!

    Honestly I never use the app. Just, whatever is on the screen is good enough I guess.

    WiiU: Windrunner ; Guild Wars 2: Shadowfire.3940 ; PSN: Bradcopter
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    ASimPersonASimPerson Cold... and hard.Registered User regular
    webguy20 wrote: »
    Just got my CPAP. Why the hell does it use a cell connection and not wifi? I suppose its so old people don't have to set it up on their wifi network even if they have access to one, but it really sucks when you're a person who lives out in the sticks without cell service!

    I've been wondering the same thing. It works, but it's just 1 little bar and I need the reporting to work for insurance and possibly other purposes.

    Though honestly my biggest fear with it so far (I've had it since mid-January) is that I can't really notice any difference using it or not. I wasn't constantly fatigued in the first place and was shocked that I was diagnosed. If anything, I sleep worse now because inevitably something about wearing it causes me to wake 1 to 3 times every night whereas before I slept the night.

    I'm debating what to do because apparently for my insurance to cover it I have to tell my doctor that it's fantastic and that I'm definitely noticing a difference. I don't feel like I can honestly say that.

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    SorceSorce Not ThereRegistered User regular
    The machine may need to be tweaked as far as it's settings either on your end or the doctor's.

    sig.gif
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