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Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS) |
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Hi, catra121:
I called around for hours yesterday, but I could not find a doctor willing to take me as a patient, even if it is only for the scraped knee wound. What did I expect!? That doctors would just scramble to help me with this wound!? In my dreams!!! I think right now that I have lost trust in doctors, any doctors, forever. It is not that big a deal for them to help me, I am not asking them to go get the moon for me, but none of them would help me with my wound. Ha! Ha! How kind and compassionate they are! (I am being sarcastic here.) If I could read their mind, I am sure they must be thinking I can go to hell with my wound. After all, to them, it is "just" a scraped knee wound which will heal. If this wound was going to heal, it would have started doing so a long time ago. Tomorrow, I will have had this wound for a week exactly. It should have healed by then, but is not showing a single sign of healing. All the scrapes I had in the past, including knee scrapes, healed in a few days. This scraped knee wound should never have gotten infected in the first place. The Emergency Room doctor who first saw me after the work injury occurred ![]() ![]() ![]() Catra, I was wondering if you knew of the kind of specialists who take care of infected wounds, since absolutely no primary care physicians want to help me. Quote: "He was all, "I GUESS I could take a culture and send it out."" I kept the last dressing with the pus on it (the one my primary care physician made). I wish I could send this dressing out to a lab without a doctor's prescription (because none will give me any) so I could find out what is in this pus (MRSA or something else). Then I could go to my primary care physician with the results and tell him something like: "See! I was right! My scraped knee wound IS infected!" But, unfortunately, I cannot get a prescription. No prescriotion = no pus test, which means the infection will never go away. Gangrene will come and my knee will be amputated! Then, besides RSD, I will have phantom limb pain. Quote: "He almost forgot and I had to insist again at the end of my appointment." I wonder if he forgot on purpose, because he did not want to have these culture and test done. Maybe he was afraid you would find out you were right and he would find out he was wrong, because that would be a shame for him! A doctor is supposed to find out what is going on with his/her patient. Finding a diagnosis is "usually" not the patient's job. Doctors are not paid for doing nothing. Quote: "I asked about being put on antibiotics and he said he really just thought it was an ingrown hair and that I shouldn't worry but they would call something in for me if it turned out it was infected." He refused to prescribe antibiotics for your infected wound, the same way my primary care physician refuses to prescribe antibiotics for my infected wound. It is obvious pus is not caused by viruses, against which antibiotics are known to be ineffective. Pus is caused by some kind of microbes or another, against which antibiotics are very effective. So why refuse to prescribe them for wounds full of pus? I noticed many, many doctors do not like their patients to ask them for a particular prescription (antibiotics, for example); they like to take the initiative. Of course, if they do not take any initiative, the patient pays the price in terms of aggravation of the wound, pain, and suffering. It smells suing here (I mean me suing a doctor if I EVER find out there was a medical malpractice from his part. I did not know a person could not have an invasive procedure with an active infection going on somewhere inside his/her body. Quote: "And then my RSD spread after the block...can't be sure the two things are related but I have my suspicions." All these doctors who destroy the lives of their patients this way should be punished by the AMA, which should take away their license to practice, so they do not destroy the life of another patient. Unfortunately, it is the fight of the iron pot (doctors and their good lawyers, whom they can afford) against the wooden pot (patients, often without lawyers, whom they cannot afford). Quote: "Anyway...my point being that a poor primary care physician can actually do you a lot of harm if you let them." I agree with you one zillion %. Quote: "It appears yours is not willing to listen to the patient at all and take their concerns seriously." True again. Quote: "I always left hopeful no matter how dire the situation or how much pain I was in." This kind of doctors are angels and since there are so few angels on this earth, I wonder if I will ever find one. Quote: "If the knee is not better in the next few days then I would again consider going to the ER if you haven't found a new primary care physician." I will do that. However, I hope I will not hear a comment from an Emergency Room doctor, such as: "Emergency Rooms are for life threatening emergencies, not for just infected knee scrapes. Go back to your primary care physician!" If an Emergency Room doctor tells me something like this, I am stuck because I cannot go back to my primary care physician, who will refuse to help me, just like he refused to do on February 15, yesterday. Like I mentioned at the beginning of this message, I have had no success finding a new primary care physician. If the microbes from my infected knee wound can kill me, I should rapidly write a testament, so my two-year-old baby boy does not go in an orphanage, in which he will be just a number. I want my treasure to live with my police officer boyfriend, if I should die. My boyfriend loves my baby as if he were his own. I know my baby will have a happy life with him and this is all that matters to me, his mother. Thank you so much for your compassion, understanding, and information. I will try again to find another doctor, but on a small island, there is not much chance of success. I failed already, like I mentioned in the beginning of this message. I hope this time will be different. ![]() |
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I just wanted to tell you that their are doctors who specialize in infections and related stuff...they are infectious disease specialsts (or ID doctors). They should be able to spot an infection easily and get you on the meds you need. If the first ones they put you on don't work then they can get you on another. This is their specialty so perhaps you would have better luck.
As far as the ER...infections can be life threatening so although I would not expect you to be seen immediately over trauma patients or something like that...it IS serious enough to be treated at the ER. Anyone who tells you differently is speaking out of their rear end. If that infection goes untreated and ends up entering your blood stream it could KILL you. Seriously...look up "sepsis"...this is not something that should be ignored. I am so frigging amazed at how incredibly ridiculous the medical profession is getting. Seriously...I cannot imagine why a primary care physician would refuse to schedule an appointment with ANY patient that calls unless they do not accept your insurance (which still is not a good excuse because you should still have the OPTION to pay OOP if you choose). It is just insane...and I am so sorry to hear what you are going through. Is there anyone you know who could refer you to their own primary care doctor? I found mine because my boyfriend referred me to the practice (he's been going there his whole life) and when I called to make the appointment they asked me a little bit about what was going on and then they told me who they thought would be the best fit for my sitation...and that's where I met my current doctor. When you called up the different doctors did you try just saying that you were looking for a new primary care physician? Maybe that would at least get you in the door. I don't know...it's all so ridiculous to me. Anyway...hope that you get the relief you need soon. After a week of the wound not getting any better it should be obvious to anyone that this is more than just a simple scrape. If you luck into a kind doctor at the ER then perhaps you could ask him/her for a referral to a different primary care doctor or infectious disease specialist. The good ones will do that...especially if they are caring and compassionate like you would expect. I'll keep you in my thought. |
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Hi, catra121:
I was so shocked at the way my primary care physician treated me yesterday, on February 15, that my mind sort of "erased" some of the things that happened during this consultation, things I am remembering little by little. Besides what I mentioned in my other messages in this thread, I remember that my primary care physician dared claim my scraped knee wound had HEALED. If this is true, then where is the normal, healthy skin that should cover the wound? The wound is not even starting to form a scab, thin or thick. Catra121, I am not sure if you know this, but I am an American Legal Permanent Resident, who has been living in Tahiti, French Polynesia, for a few years, hoping the French Polynesian public health system (CPS or Caisse de Prévoyance Sociale) would send me to France to cure my RSD. This was in 2005, when I still had hope my RSD would go away, so I could have a life worth being called a "life". Unfortunately, not only did my RSD not go away from my left knee / leg, but my RSD also spread to my whole body. I now have to fear wounds that might happen to any part of my body. I am also a French citizen. I will do everything in my power (which is not much ![]() As far as Emergency Room doctors, I am afraid they will treat (mistreat) me the same way my primary care physician did. But I will go there if I cannot find, in Tahiti, a doctor specialized in infectious diseases. Quote: "If that infection goes untreated and ends up entering your blood stream it could KILL you." I imagine easily my family on the day of my death, especially my parents and brother, thinking, as I am being buried: "Good riddance!" Any doctor in French Polynesia accepts the public health insurance CPS. I just have to pay a co-pay of 30% for the consultations and medications. Quote: "Is there anyone you know who could refer you to their own primary care doctor?" Unfortunately, no. I called almost every doctor in Tahiti, even those that live far away from my home. The other doctors must have gone away on vacations. Quote: "When I called to make the appointment they asked me a little bit about what was going on and then they told me who they thought would be the best fit for my situation...and that's where I met my current doctor." The same thing happened with me. They asked me a lot of questions and I gave them some information on my situation. Quote: "When you called up the different doctors did you try just saying that you were looking for a new primary care physician?" After I said this, the questions from their part came. No one would take me. Even if my primary care physician (and possibly other doctors) see the scraped knee wound has not healed weeks after the injury occurred, they will just say it has healed to get rid of me. Thank you for your information and kind words. Right now, my scraped knee wound is so, so painful it feels like someone is pounding on it, as if pounding on a drum. ![]() |
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#4 | |||
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I'm so sorry...what an awful situation all around. I will keep praying for you and hoping you can get some relief.
I just talked to my boyfriend who has had many many bad scrapes in his day and he suggested the following. Clean it out using alcohol (rubbing alcohol that you can get in the pharmacy). Do this several times a day...as often as the guaze is full. He said he uses the regular liquid kind but there are also aerosol sprays. Use gauze over the wound. I know this part sounds painful and I don't know if you can do it or not because of the pain...but he said to try to pack the wound if it's deep to draw out more of the pus. Tape the gauze down firmly so that it can really draw out the pus and infection. He said if it is a really deep scrape that it could take a couple of weeks to heal fully...but cleaning it out several times a day is a must. He said you can use neosporin on it...but the alcohol should be sufficient in most cases and may make it easier to gauge how much pus there is vs cream. That's about all you can do on your own I guess...all of which you may be doing on your own anyway...but I figured it might be worth asking him since he doesn't go to the doctor for anything really and I know he's had his fair share of first aid. Has two brothers and I take it they got into a lot of mischief growing up...not to mention sports injuries. |
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#5 | ||
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Magnate
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I am so sorry you are facing this. I don't allow any doctor to touch any part of my legs. Even if it is not by the RSD areas. All the ones who have dealt with rsd a lot understand. Some others that are less informed will push it but I have paid too many times for no reason that I don't allow it. Everyone is different though so I am not saying what you should or should not do.
I am so sorry for the limited options in care. Would there be a skin doctor if not an infectious specialist? I am sorry about your son too and also how that is making you feel. You are a good mom who has a medical problem which is not in your control. I know your son is young but you can see how much he loves you. Hope things get better |
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#6 | ||
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Hi, daniella:
If I forbid any of my doctors to touch any part of my legs or any part of the rest of my body (since I have generalized or full body RSD), I am afraid they will kick me out of their office for lack or refusal of cooperation (despite their knowing I have RSD) and I am afraid they will write something bad about me in my medical records for any potential new doctor to see (then this new doctor would not want to have me as a patient, because he/she would think I am a difficult patient). I need at least one doctor to prescribe the medications for my generalized RSD, for my epilepsy, for my Hashimoto's hypothyroidism, etc. Quote: "Everyone is different though so I am not saying what you should or should not do." My dream would be to have the legal right to tell any of my doctors not to touch me because of my generalized RSD without them having the legal right to kick me out or abandon me as a patient. I wish these doctors would understand it is not personal against them but because of my geberalized RSD that I prefer not to be touched anywhere. Quote: "Would there be a skin doctor if not an infectious specialist?" There are skin specialists in French Polynesia (I think they are called dermatologists). If I cannot find an infectious disease specialist, I will try the dermatologist. As for my two-year-old baby boy, I feel like I am a terrible mother to him. I love him from the bottom of my heart; he is the treasure of my life. I feel like I should be able to do more for him instead of crying because of my RSD pain and making him cry because he saw me cry. I can tell my son loves me but I live in fear he will stop loving me as he grows up, especially when he realizes I am a sick and disabled mother. Will this not make him feel ashamed in front of his friends to have such a mother? I have to mention he had a transplant of one heart, two lungs, and two kidneys. I would do anything for him to have a better and happy life because it is not easy and fun being sick and disabled. I thank you for your information and kind words. ![]() |
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#7 | |||
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Kitty,
Is it not time to leave your wound open. This is the only way it is going to scab over. You do not want to go to a dermatoligist. They are for skin disorders (not unhealing wounds) Sometimes silver compounds can turn a wound a yellowish white with a mild oder. (not a dirty diaper oder)Yes you have every right to tell a dr. that he should not touch you because of a disease process such as ours. That is your right as a patient. It is also unneccessary for them to rip your bandage off like you stated earlier. Tell them to use water, soak the bandage and the bandage will come off without adhering to the skin. I do suggest you follow up with either an infectious disease Dr. or a wound care facility. Quote:
__________________
. GOD help me be faithful in the midst of my suffering. Alt1268 |
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#8 | ||
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Hi, catra121:
Quote: "Clean it out using alcohol (rubbing alcohol that you can get in the pharmacy)." The pharmacies in French Polynesia sell different kinds of rubbing alcohol. How many degrees should the rubbing alcohol mentioned by your boyfriend have? 40°? 50°? 60°? 70°? More? Or does it not matter how many degrees this rubbing alcohol has? The pharmacies in French Polynesia also sell non-stinging rubbing alcohol, which smells a lot like mentholatum. I do not know if this is a good idea to use non-stinging rubbing alcohol or if it is better to use stinging rubbing alcohol. I understand it will be painful to use stinging rubbing alcohol on my scraped knee wound, but the most important thing to me is that my wound heals, no matter how much pain I have to endure with the stinging rubbing alcohol. Quote: "Do this several times a day...as often as the gauze is full." First, I disinfect my scraped knee wound: I will, from now on, use the rubbing alcohol your boyfriend talked about. By the way, I do not know if this is a good idea to wash my wound with some soap and rinse it well, before I start disinfecting it. Second, I apply on my wound the Flammazine cream (a white hydrophilic cream, containing silver sulphadiazine) the Emergency Room doctor prescribed for me. I use a thick layer of cream, just like this doctor did. Third, I apply six 10 centimeters X 10 centimeters non-woven gauze pads on my wound, just like the Emergency Room doctor did. I guess she decided to use that many gauze pads to try preventing or avoiding the pus crossing all the layers of gauze pads (if there are too few of them) and staining my clothes or bed sheets. Fourth, I use two small pieces of tape to keep the first two gauze pads in place. Then I can put the four other gauze pads on top of the first two. Fifth, I use a gauze bandage, to wrap around my knee and over the six gauze pads, including the first two that are taped to my skin. Sixth, I use another type of bandage (not an ACE bandage; I do not know the name of this bandage in English). Seventh, I use a kind of "net", whose exact name I do not know, to hold the dressing in place. Last, I put on my functional knee brace, whose bending is locked at 40°. It hurts my unhealed and infected scraped knee wound, when I bend my knee more then 40°. These are the problems with my scraped knee wound at the present time: -Redness around my scraped knee wound -Large amount of pus, thick and yellowish, coming out of my wound (this amount of pus is so large it sometimes crosses most, if not all, the six gauze pads of my dressing; this amount of pus also happens to cross the gauze bandage and the other bandage from time to time) -Foul odor, like that of a dirty baby diaper, coming out of my wound -Burning and throbbing pain in my wound -Small amount of liquid, with the consistency and color of cooking oil, leaking from my wound after its disinfection, after my wound is left uncovered at night for an hour or two, before I make a new dressing for my wound -No new skin or scab growing or even starting to grow over my wound -The time that has gone by since my knee got scraped on February 10, 2012 All these problems make me fear it is not an "ordinary infection". It might very well be (and I believe it is) a MRSA infection. Of course, I have yet to find a doctor who will believe me. Hard, very hard task! These doctors would believe me first if I told them the sky is green, before even thinking of believing I have an infection in my scraped knee wound. No wonder I have lost trust in all doctors! Quote: "He said to try to pack the wound if it's deep to draw out more of the pus." Under my scraped knee wound, there might be a large "pocket" of pus, for all I know. There is no way for me to tell for sure. I think it is quite likely, however, because one of the last times I had a bad wound on this knee (post-operative wound from my November 2004 Anterior Cruciate Ligament reconstruction), this wound leaked pus for months, even though this wound seemed to be closed and even though the amount of pus that leaked from this surgical wound was less than the amount of pus that is leaking from my scraped knee wound. Quote: "He said you can use neosporin on it...but the alcohol should be sufficient in most cases and may make it easier to gauge how much pus there is vs cream." Can I not use rubbing alcohol first, to disinfect my wound, and then neosporin, once the rubbing alcohol had dried? Thank you for your information and thank your boyfriend also for me for the information he provided. It gives me back hope and I do not have to spend my time crying a lot anymore. ![]() |
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#9 | |||
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Senior Member
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Quote:
As for the neosporin cream...you could use some after the rubbing alcohol has dried if you want to...using a cream might even feel soothing after cleaning it out with the rubbing alcohol. That's really just up to you. From the sounds of it...we both think maybe you should try cleaning it out more times during the day. You didn't mention how many times you go through the process of cleaning it out and bandaging it but it should probably be every 6-8 hours...more if it's seeping through the gauze even at those intervals. Cleaning it out more often may mean you can use "less" gauze. He also wanted to add that if you are able to soak your knee in warm water (like a warm bath) then that could help to draw out more of the pus too. A way that they sometimes track whether the infection is getting better here is to draw a cirlce around the red area surrounding the wound with a pen or marker and then track whether that redness is getting bigger than the circle or if it starts getting smaller. I don't know if you can do this given how sensitive the area is...but if you can it might give you a sense of whether it is getting better or worse. Hope these things help. A bad infection can take a few weeks to heal and it's actually better for you if the wound hasn't healed because it will be easier to drain the infection than if the scrape had scabbed over. Then you would have to lance it to get it drained and I cannot imagine how painful that would be in an area where you have RSD. |
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Hi, catra121:
One last thing I forgot to mention (aah! my bad memory again!) is that when I change my dressings, I throw away the old one in a small trash can. Guess what I noticed about 24 hours later!? (I had not payed attention to this potentially happening before; I had not even thought this could happen.) I noticed this part of my old dressing, the gauze pads whose centers were soaked in pus and had just a little bit of Flammazine cream left on them, had been eaten, YES, eaten by some little ants. Can you believe this!? Only the parts of my gauze pads with no pus and cream on them had not been eaten by these ants. How disgusting these ants are! Really! I also noticed that these small ants were walking up along my left injured leg, biting it painfully here and there. Because of my RSD, these bites feel like burning bee stings. ![]() ![]() ![]() Catra, you do not have to apologize; I know you and your boyfriend have a life of your own that keeps you busy. It is normal. You are both already being soo kind and compassionate ![]() Quote: "He uses the 70% rubbing alcohol...and neither one of us is sure about whether the non stinging stuff would be as good (though we don't necessarily have any reason to think it wouldn't be). The idea here is just to get it really cleaned out and disinfected." I will buy the 70% stinging rubbing alcohol, because this is the one your boyfriend uses. Since it really worked on him, it should work on me also. When I think about the non-stinging rubbing alcohol, I am not so sure it will work at all, so I will not take any chances with using it. I will use the stinging rubbing alcohol, so I am at least sure it will work. I will do just as you suggested, using the neosporin cream after the rubbing alcohol has dried. Quote: "Using a cream might even feel soothing after cleaning it out with the rubbing alcohol." This gives me even more reason to use this cream. Quote: "You didn't mention how many times you go through the process of cleaning it out and bandaging it but it should probably be every 6-8 hours...more if it's seeping through the gauze even at those intervals. Cleaning it out more often may mean you can use "less" gauze." From Mondays to Fridays, I work as a secretary-archivist in the garage where I had my work injury. I leave home for work at about 5:30 AM and I get home after work at about 5 PM. This gives me enough time to do, at home, in the evening, only one dressing daily, from Mondays to Fridays. This does not apply if one of these days is a vacation day. I could make more dressings at my workplace, but I would then have to take an extra large first aid kit, will all the necessary stuff inside. However, there is no bathroom in the garage for female employees, but there is a bathroom for male employees (especially for the mechanics who get dirty after taking care of cars in the garage). Female employees cannot use the male bathroom because it has no door to protect thr privacy of the female employees. Besides that, I am not sure at all my boss would appreciate my taking some time off work to do my dressings, even if the scraped knee wound was a work injury. On Saturdays and Sundays, I can do more dressings, with my two-year-old baby boy looking on with lots of interest. He points at my old dressing, still on my injured knee, and asks me: "Do you hurt?" Since I hate lying to my son, I tell him the truth and I reply: "Yes, it hurts, but I will take medication to make the pain stop." He asks me a lot of questions, such as: "What is this? What are you doing? Why are you doing this?" Even if he may not understand all my answers, I do my best to help him understand, so he does not get scared or is less scared when he sees me crying. My child unfortunately knows, at his very young age, a lot about the medical world: he has spent more of his two years of life in the hospital than out of the hospital, because of his cystic fibrosis, the complications of this disease, all the transplants (one heart, two lungs, two kidneys), the recovery from surgery, the physical therapy, the hospitalizations for exams or for illnesses that could kill him, although harmless for another child (such as the flu). Quote: "He also wanted to add that if you are able to soak your knee in warm water (like a warm bath) then that could help to draw out more of the pus too." I will go to a store to look for a large enough plastic basin, which could be filled with warm water. Then I could sit in this basin and let my injured knee soak in this warm water. I guess I would have to do this until the water gets cold. After throwing the dirty, cold water away, I could wash the basin with some soap, fill it with some warm water again, and soak my knee by sitting in the basin again. No house in French Polynesia has bathtubs in them, which I find strange. Quote: "A way that they sometimes track whether the infection is getting better here is to draw a circle around the red area surrounding the wound with a pen or marker and then track whether that redness is getting bigger than the circle or if it starts getting smaller. I don't know if you can do this given how sensitive the area is...but if you can it might give you a sense of whether it is getting better or worse." This is a very good idea. I will use a permanent marker, like orthopedic surgeons when they mark the different areas of the knee, as well as the area(s) they are going to operate on. As for the pain and the sensitivity of the area of the scraped knee wound, I will stand the pain if it helps me tell if the infection (redness) is getting better or worse. Quote: "It's actually better for you if the wound hasn't healed because it will be easier to drain the infection than if the scrape had scabbed over. Then you would have to lance it to get it drained and I cannot imagine how painful that would be in an area where you have RSD." If my scraped knee wound has started to scab over or has completely scabbed over, I might think the infection has healed when, in fact, it has not. If a scab is present over the wound, apart eventually from the redness around it and the throbbing pain, how could I tell the wound is still infected? I guess the pus could not leak anymore if there is a scab over the wound. Removing the scab would be nearly impossible, unless a local anesthesia was done (how very painful in an RSD area). I do not see my primary care physician accepting to do this, considering he does not believe in the infection, like I mentioned it in my previous messages. As for draining the infection with a lance (do you mean a syringe with a needle?), I believe I would pass out from very strong fear before the doctor (dermatologist or orthopedic surgeon) even had the time to start draining the pus with his syringe and needle. I would think the doctor would have to drain the infection several times, especially if the pus keeps on "coming" again and again, after each drainage was done. I thank you and your boyfriend very, very much. I got from you both much, much more information and help than from my doctors and Internet web sites. You are the best! ![]() ![]() |
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