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  • Episodic Chronic Pain

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    Old 01-03-2018, 09:50 PM   #1
    Eva 14
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    Question Episodic Chronic Pain

    I have a long history of severe chronic migraines that can last for months and even years. I saw a neurologist for many years, and was finally referred to a pain management doctor in 2009.

    Iíve had several migraines that have lasted for 4 or 5 months. The pain was unbelievable. Beginning in December 2010, I went into status migraine that ended up lasting for 6.5 years! Without pain meds, I could not have handled the excruciating and severe constant pain.

    Seven months ago, my migraine miraculously ended, for no apparent reason. I and my doctor both thought that my migraine would never end.

    This respite from constant migraine is wonderful, but no one knows how long it will last. Iíve suffered from migraine for over 25 years. In the past, Iíve had breaks that lasted for 6-9 months. My longest break from migraine lasted for 1.5 years.

    Now that Iím no longer in constant pain, Iíve weaned myself off of my pain meds. I have to take a pretty high dose when in migraine. Iíve tapered before in the past, during pain-free times.

    Currently, I only need pain meds for 3 days out of the month for severe menstrual cramps (I have endometriosis). I also have insomnia and need to take sleeping pills.

    My question: Iím going to be moving soon and will have to find a new doctor. Do I still need to see a pain management doctor, even though Iím only taking sleeping pills and very limited opiates? I wonder if primary doctors are willing to prescribe even small amounts of opiates these days? I really only ask because I donít currently have health insurance, and specialist pain doctors are expensive.

    Itís entirely possible that a PCP might be freaked out if they saw my medication history. I learned this the hard way a couple of years ago when I was looking for a new PCP. I was totally honest about my meds, and I got condemned for being on them. I guess most primary docs donít understand pain management, at all.

    It does get expensive to have to see a pain doctor every two months, though, when currently all I really need are sleeping pills. It will also be a drive to the nearest pain doc in my new area. But maybe I should be prepared with a pain doctor there, when and if I do go back into prolonged migraine.

    Should I line up a pain doctor in my new area? Someone posted on a review that PCPís at my new local hospital/medical center arenít ďallowedĒ to prescribe any opiates. I guess that may be true, given the recent crackdown on pain meds.

    Changing doctors is always scary, and so is moving to a new area.

    These days, PCPís (presumably?) donít want to prescribe any opiates, and the reviews for pain docs in my new area arenít very good. Lots of people posting that ALL patients are treated like ďaddictsĒ and that pain patients are made to undergo expensive and invasive procedures that donít work and only serve to financially benefit the pain doctors. Procedures have never worked for me, and now I really canít afford that.

    Thanks for any advice. I asked my current pain doctor if a PCP might prescribe my current limited meds, and he wasnít sure. Due to recent crackdowns, Iíve read that these days if you need opiates at all, you need to see a pain management doctor. I do wish I didnít have to see a pain doc every two months when Iím not in pain, given the time and money constraints.

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    Old 01-05-2018, 07:33 AM   #2
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    Re: Episodic Chronic Pain

    I think conditions vary depending on the area of the country. Some states tend to be more strict than others.

    Perhaps you could get a letter from the pain management doctor that could help you avoid new testing in your new location. Obviously you will want to get copies of all medical records and take those with you to the new location.

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    Eva 14 (01-06-2018)
    Old 01-05-2018, 05:50 PM   #3
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    Re: Episodic Chronic Pain

    From my experience here in WA and my keeping very up to date with the opioid & pain management news and reading message boards, the climate is very much moving against our favor. Very very few folks are able to get opioids for chronic pain from their primary doctor anymore, even those on low stable doses who have failed other treatments. Despite the annoyance and cost, I would suggest seeking out a new primary doc and then a pain doc as soon as you move. Yes, ensure you have a copy of all your medical records before you move. Review then in detail and ask for any corrections to be made before you move.

    Although it is very likely the doctor's office will want to get them straight from your old doctor, you want to ensure they accurately reflect your situation, as errors are very common, and a small error can make a big difference in our world. Also, yes, try to get some sort of letter from your current prescribing doctor summarizing your situation and your expected short and long term opioid needs.

    If you aren't moving too far away, your current doctor may be able to recommend someone. Keeping a past prescription bottle (such as from your highest dose) and of course a current prescription bottle isn't a bad idea either, especially if you are moving out of state, as each state has their own opioid database as far as I know, and that is a quick easy way to prove your med & dosage.

    Even assuming you could get a new primary doctor to continue to prescribe your current med & amount, you don't want to wait until you feel that you need daily high dose opioids again to seek out a pain doc. For one, there is often a long wait for new patient appointments. Also, they typically won't prescribe anything the first visit, no matter how dire the situation is (as they do a UA the first visit and wait for those results to come back, to ensure you didn't lie about what you currently take or don't take).

    It is also possible that the first pain doc you see won't be a good fit / won't prescribe for you. Unfortunately I think the climate is only going to be getting worse in the coming months and years too, as more folks are pushed from their primary doc to a pain doc, and more pain clinics close. So I'd reccommned you try to get in somewhere sooner than later.

    It is the norm at any pain clinic now to need to make and pay for an appointment every 28 or 30 days to get a paper script, sign a contract, submit to regular UAs, have to use the same pharmacy every month, not accept any opioid script from any other doctor for any reason, be available the same day if they want you to come in for a pill count, etc. So yes, many folks would consider those rules as being treated like an addict.

    Unfortunately doctors can't just take us at our word as a small percent of folks are abusing their meds, and they put their license on the line. The way I see it is that those rules protect both doctors and patients. A doctor is less likely to get into trouble with the DEA if their patients follow those rules, and in turn, that makes a patient less likely to find themselves cut off from the meds they rely on.

    In my own state, having been under the care of a doctor who gets their license suspended for apparent overprescribing has been known to get the patient blacklisted at other clinics they try to transfer their care to, as the new clinic just doesn't want to take the risk on them. This happened in my state when there was a local pain clinic with multiple locations that all got shut down. Those patients had nowhere to turn because the few clinics that were left either wouldn't take patients from that clinic/doctor, or weren't accepting new patients at all.

    I go to the only clinic I know of in my area that will even prescribe long term high ish dose opioids for chronic pain. All the others either stopped prescribing those sorts of meds years ago or have been shut down or got scared into closing their own doors. I consider myself very lucky to be getting anything at all, especially with my type of pain (headache being something that can't be proven), and will not be the least bit shocked if I get cut off, so I've been trying to plan for that. I don't see things improving, only getting worse (anti opioid). But yes, there is regional variance.

    Hopefully you get lucky and find a good primary doctor to establish care with and get any current prescriptions from (such as the sleeping pills), and they can refer you to a good pain doc who you could see once to get set up with. If you don't need any scripts from them currently, until you have a chronic episode, I could see them only asking you to come in every 6 or 12 months to stay in their care. With your history I think it is justified to want to set something up. I doubt they would make you come in monthly if you are not getting an opioid script. Best wishes.
    constant headache since 2006

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    Eva 14 (01-06-2018)
    Old 01-05-2018, 07:53 PM   #4
    Eva 14
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    Re: Episodic Chronic Pain

    Thanks so much for your replies, Kate and Teteri.

    I am really scared about having to start all over and find a new pain doc. Yes, it’s in a different state, and it’s a more conservative area than where I live now. Although, the situation regarding opiates for chronic pain seems to have gotten really bad in all states, lately. Including where I live now. It’s a very large metro area, but there are only a few doctors who will prescribe opiates for chronic pain. My new town is small.

    Kate, that’s a great point about not waiting until I’m in status migraine before trying to find a new pain doc. I did think of that myself, as well. I know that the waits for pain docs can be long, and it’s always possible things may not work out with the first doctor I see. Also, it’s true that as chronic migraine/headache patients, we don’t have MRI’s that can “prove” our pain, and some doctors are likely to look negatively upon us, not believe us, or to view us as an unnecessary risk.

    I feel so sorry for those pain patients whose doctor got shut down and now no other doctor will see them. What are they supposed to do? Gosh, its not like the patients did anything wrong, and given the strict anti-opioid climate these days, the doctor probably didn’t do anything wrong, either.

    My former pain doctor was forced into early retirement due to a very suspect and stupid complaint. He was a great doctor and he followed all the rules to the letter. My current pain doc is always saying he’s scared that the government will shut him down, even though he follows all the rules, too. He also reduced my meds by a lot last year, due to the crackdown. He even said that the government may soon take away opiates, completely. My former pain doc said that, too. Scary for legitimate chronic pain patients!

    My former and current pain doctors have allowed me to come in every 8-12 weeks. I can’t imagine having to come in every 28-30 days. I don’t know how people afford that.

    I have no problem with having to submit to urine tests, but now that I don’t have health insurance, I am worried about the cost of drug tests. Apparently, drug tests can cost over $1,000! If I have to pay that much out-of-pocket, I’m not sure how I’ll be able to afford it. Doctor’s appointments are expensive enough, as are meds.

    I have two important questions:

    1. Regarding the referral/medical summary letter from my current pain doc: Is that something I should ask him for now, to give to me directly? When I do find a potential new pain doc, I’m sure they will require a referral letter, probably directly from my former pain doc. Should I wait till then, or call my current pain doc now and request that he write up a letter summarizing my condition and send the letter to me now, directly?

    2.. I did consider first trying to find a PCP in my new area, in order to get a recommendation for a good pain doc in the area. I also considered asking the PCP to prescribe my sleeping pills, so that I wouldn’t be forced to see a pain doc regularly if I only need sleeping pills.

    However, my sleeping pills are a benzodiazepine (Schedule IV), and many doctors don’t even want to prescribe those these days. And some doctors (including some pain docs), don’t want to prescribe benzos and opiates together. I’ve been taking both together for over 25 years with no problems. When in migraine, my pain is so severe that I would never get any sleep without benzos. And my insomnia began even before my migraines did, so even when not in pain, I do need sleeping pills.

    3. If I were to first get sleeping pills (benzodiazepines) from a PCP, and thereafter see a pain doc for all controlled substances, I’m kind of afraid of somehow getting accused of “doctor shopping”. I’ve heard of people getting accused of “doctor shopping” in some of the most innocent of circumstances, these days. Is this a legitimate concern, given that they are benzodiazepines?

    People who don’t have chronic pain don’t have a clue what we go through; physically, emotionally, or with doctors. A friend of mine thought it would be easy for me to find a new doctor, right in the small town. She doesn’t realize that specialists (particularly pain docs) are very hard to find. I have no idea how I’ll be able to drive if I’m in severe migraine pain. Around here I take public transit. Driving in severe migraine got too scary for me.

    Best wishes and thanks so much for any advice.


    Old 01-05-2018, 10:32 PM   #5
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    Re: Episodic Chronic Pain

    I'd ask for the letter sometime between now and your 2nd to last visit before you move. Its better and easier to ask for something like that in person, so you don't have to try to explain to a 3rd party over the phone, and so everything is fresher in your doctor's mine. You may need another one down the road, maybe not. Might as well ask.

    I think you'd need a new/local PCP referral to see a pain doc anyways, even if insurance doesn't require it. Not sure it would be your old out of state pain doc referring you to a new one.

    You are likely to have an issue with the opioid + benzo. That is becoming a huge no no, even for folks who have done that successfully and safely for years, as all the guidelines say that is a risk. So, do not be surprised if you are told only one or the other. It would likely be better to have your new PCP continue that prescription, as a pain doc is even more unlikely to prescribe a benzo, although most pain docs would ask you if you get benzos from other doctors and double check the database.

    I think it would be fine to first get the benzo from a new PCP, as you need a PCP even if you don't have a pain doc. If you would get opioids from a pain doc in the future and they wanted to take over prescribing the benzo, they could do that. I don't see that as doctor shopping as there is no intent of benefit on your end.

    Even in my large city I had a heck of a tough time getting good pain care, and I've had a lot of luck on my side to get where I am now with a good clinic and a good cocktail of meds. Most folks I know online with my chronic severe constant headache condition are never offered opioids.

    May I ask why you are moving if the move will have such a negative impact on your life, with the doctors, meds, driving, etc? For work? I hear you on the driving - I am much safer on the road when on opioids then with severe pain - you just can't think and react clearly. With all the meds my pain has been under reasonable control, the best I can hope for probably. Best wishes.
    constant headache since 2006

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    Eva 14 (01-09-2018)
    Old 01-09-2018, 07:18 AM   #6
    Eva 14
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    Post Re: Episodic Chronic Pain

    Kate, thanks for your kind reply.

    I just saw my current pain doctor for the very last time a week ago, so I didnít read about the possible need for a referral letter until after I saw him. I did of course ask my doctor about how my records would get transferred.

    I already called up my doctorís receptionist a couple of days after my final appointment and asked her to please send me a copy of my medical records. They charged me a $50 fee for my records, which seems rather excessive, but, whatever.

    Now that I think about it, my pain doc probably should have offered to write up a summary letter about my case and condition for me to bring to a new doctor. Maybe he just didnít think of that or something. I do fear that there will be an additional charge for a referral letter, which seems pretty ridiculous to me.

    I do feel a bit awkward about calling again and trying to exlain to the receptionist my request for a referral letter, because you are correct that things always seem to go more smoothly when done in person.

    At least my pain doc and his receptionist have both always been nice to me, so it shouldnít be a problem. My pain doc has a medical assistant who answers the phone when the receptionist isnít there. The assistant isnít as compassionate as the receptionist. Sheís not mean, but she can be rather brusque. Hopefully sheíll understand that it only makes sense for me to be requesting a summary letter of my condition to bring to a new doctor, and hopefully nothing will get lost in translation.

    I do know that some doctors donít want to prescribe an opiate and a benzo, even though Iíve been taking both for nearly 30 years with no problems. The hype and hysteria regarding opiates has really gotten to a lot of doctors lately, unfortunately.

    Last year when I was still in migraine, my current pain doc shocked me by telling me that he didnít want to prescribe any benzo to me anymore. I told him thereís no way I could sleep without one. Heís been getting more and more terrified of the DEA or whichever government agencies are responsible for the current crackdown.

    Fortunately, it was only because I was on a fairly high dose of opiates that he didnít want to continue my benzo for sleep. As soon as my migraine ended (which I believe was by the next visit) and I was able to drastically reduce my opiates, my doctor had no problem with continuing my benzo.

    Good thing, because I had tried sleeping for a few nights with absolutely no sleep aid, and I didnít get any sleep, at all. My doctor didnít even try to taper me off benzos, and I know you canít just stop taking benzos, especially when youíve been taking them every night for over 25 years. Sadly, it seems that a lot of doctors are only thinking about their paranoia of the government lately, and not considering the very real needs and issues of their patients.

    I honestly donít know what Iíd do if I had to choose between either an opiate or a benzo. Given my long history of insomnia and my long and complicated pain history, both are absolutely essential for me to be able to function. Iíd almost say that sleep is even more important than pain relief, but then whenever my pain flares up, Iíd probably say that pain relief is more important. Thatís an impossible choice. Iím so glad I donít have to decide that, as long as I have my current pain doc.

    If there was a non-benzo med that would allow me to sleep, that would solve the debate. I asked my doctor what I could take for sleep in place of a benzo, but he just told me to take nothing. Not very good advice, IMO. It was all so sudden that it surprised and shocked me, but like I said, my migraine soon ended and my doctor was then back to having no problem prescribing my benzo, just as long as I was on a low dose of opiates.

    Thanks for recognizing that moving will have a very negative impact on my life. Thatís something that non-pain patients donít seem to understand, at all. Friends who care about me are clueless about the facts of pain management, migraine, driving, etc. Theyíve never experienced any of that, so they canít relate.

    My reason for having to move is very sad. Both of my parents recently passed away, and shortly before my mom died, my greedy and conniving elder brother secretly dragged Mom to a lawyer and tricked her into changing the Will to his favor.

    This awful brother not only ended up getting the small inheritance that my mom had arranged for me to have, but he also ended up getting a good chunk of MY home, as well as the legal authority to sell it without even informing me.

    20 years ago, my dad bought a lovely little home for me as a gift, to ensure that I would always have a nice and stable place to live. I was always so grateful for this. I was the only person who ever lived in the house for 20 years and it was known to everyone that Dad had bought the home for me as a gift, and he intended for me to live there for the rest of my life.

    Unfortunately, Dad insisted on keeping the home in his name, and thatís what ended up causing a total mess after my parents died. Dad put the house into his Trust to try to avoid the estate tax, but I would much rather pay more taxes to the IRS than ever have to deal with a lying trickster of a brother like mine.

    Right after Mom died, my brother lied to me, right in front of my other brother. My greedy brother claimed that I would be allowed to keep my home and live in it for the rest of my life. I was naive enough to believe him, because I didnít think that even HE would be low enough and greedy enough to steal his chronically ill sisterís home.

    Just 6 months after Momís death, my brother cruelly served me with an ďevictionĒ notice and secretly listed my house for sale. (I only found out my own house was for sale by checking a website!) Brother didnít care that I was sick or that I had nowhere else to go. My brother is so evil that he gets a kick out of bullying me, tormenting me, and inflicting suffering on me.

    My brother is totally healthy and he owns a mansion in Florida and has well over a million dollars in the bank. The last thing HE needs is still MORE money! By contrast, Iím dealing with two different chronic pain disorders, as well as a breast cancer diagnosis at just age 38. I graduated college with highest honors, but Iíve struggled financially due to being unable to work a regular job when in prolonged periods of status migrainosus.

    My brother has ZERO compassion or sympathy for my health problems. He basically doesnít even believe that my pain is real, and heís accused me of every negative false stereotype that we migaineurs tend to receive from ignorant and insensitive people. Brother even tried to use my health problems against meóthat is LOW. He vindictively spread so many lies about me.

    When I discovered that heíd listed my home for sale and I got the eviction notice, I immediately hired a lawyer. I knew that my brother was abusing his power as ďtrusteeĒ, but unfortunately there wasnít much anyone could do about it.

    My brother insisted on a full and immediate payment of $200,000, or else he would sell my home, ASAP! I donít have that kind of money, and I wasnít even able to borrow against my house due to it being in a Trust. I literally could not believe that my brother was willing to ruin my life for some ďextraĒ spending money for him. Heíd already stolen the inheritance money away from me; he wanted my home, too?! Heartbreaking.

    I ended up losing everything: My Mom, my Dad, my money, and even my home. My brother also made sure that I lost my car, even going so far as to charge me $5k for impound and towing once he sold my house and changed the locks. I had no way to get my car out of my garage, nor did I have a place to park a car, with no home. Everything he did was so spiteful and downright cruel.

    Without my home, thereís no way I could afford to stay in this city or this area. I love it here and Iíbe loved here all my life. So goodbye to my friends, culture, doctors, my beautiful garden, public transit, and everything else I love about this city.

    Goodbye unlimited job opportunities, too. The new area barely has any jobs, and I genuinely fear that I wonít be able to find any job there, at all. I was able to do a bit of work from home here, but I also needed to be in the city so I could come into the office(s) whenever necessary, which turned out to be often.

    If there were any possible way I could stay here, I would. But even the cost of a small studio apartment is well over double my former monthly mortgage payment. Plus, my mortgage was nearly paid off in full. I had my dream home at a very reasonable 1995 price, but my spiteful and greedy brother had to go and take my home away from me, for money and to be vindictive.

    Thanks for recognizing how tough things are going to be for me once I move. Being all alone in a new and unfamiliar area where I donít know a soul is going to be both terrifying and depressing. At least I was happy in my lovely home, even when my pain was severe. I had a nice view, a beautiful garden, and lots of sunshine. It really was the perfect little houseóI loved it there so much.

    Even if I could have kept my house to rent out, that would have made more sense than than selling it. When my brother sold my house, I barely got any of the help proceeds from the sale of my own home.

    Plus my other brother (who had repeatedly SWORN to me that he ďwouldnít be able to live with himselfĒ if he accepted any of the profits from the forced sale of MY house) went back on HIS word. Heíd PROMISED me he ďdidnít want ANY moneyĒ, yet he ended up taking every dime that came his way, refusing to provide me with ANY help, whatsoever.

    If my parents could only see how horribly my brothers are treating me, theyíd be appalled. But since theyíre not here and we have zero other family, thereís no one around to tell either one of my brothers just how unfair theyíve both been to me. My elder brother got away with inheritance theft, and my younger brother took and kept for himself every penny that came his way, despite all the promises to the contrary.

    The new area is basically a retirement community, and not only am I too young for that, but I also will have to work till I drop dead, now that I no longer have my home as security for my retirement. Itís a horrible situation that could have been avoided, if only my brother hadnít tricked my mom into signing the money over to him. My mom told me, ďI have no idea what I signed.Ē By the time I thought about calling in lawyers or Adult Protective Services, it was too late.

    I miss my mother, my father, and my home. Very soon Iím going to be missing my city, my area, and my state. Iím dreading leaving all this behind for a small town. Guaranteed loneliness,but no guarantee of a job. Itís terrifying.

    Thanks for your comments. I really think that only a fellow chronic pain sufferer and chronic migraine or headache sufferer can even begin to understand all of the limitations put on us by this insidious disease. And because no one can see the pain of constant migraine, some people refuse to believe that such a condition even exists. If only people were more informed and educated about migraines, it would be a start.

    Best Wishes,

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    tortoisegirl (01-10-2018)
    Old 01-09-2018, 08:23 PM   #7
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    Unhappy Re: Episodic Chronic Pain

    Eva, It's hard to even know what to say after all that has happened to you. Your Dad did his best to make sure you were taken care of bless his heart and to have his own son take that from you is really sad. I will keep you in my prayers because I know God has a plan for you that no evil can take away.

    I have seen you post before and when you tell your story it's almost like you are telling mine! This is my 24th year of migraine and believe me when I tell you that I have been to numerous Doctors of all kinds and tried everything out there for migraine prevention and plenty of meds that weren't specifically made for migraines but we tried them anyway. Nothing made any significant difference and after years of chasing the pain with PRN meds, we went to daily ones. It controls my pain most of the time. And since starting Pain Management, the drug mix I take keeps me out of the Er all but maybe about 3 times a year. There were years way back when I would be in the ER monthly and it was a nightmare.

    To me the hardest hurdle to get over with family and friends is that migraine is not "just a headache," and you can't just take a few aspirin for it. It is so hard for them to understand why you have to cancel outings so often because you can do nothing but medicate and go to bed. They don't understand that I have to be careful and try to get on top of the pain because if it gets out of control, I won't be able to keep my daily meds down, will go into withdrawals on top of the pain and be a mess. That is when an ER trip is necessary.

    The ER is another story. I always get the Doctor who says, "I don't treat headaches with narcotics." I try to explain to them that I am not your run of the mill headache sufferer but they want to try DHE, magnesium, triptans, etc. I will let them but I make them promise that if none of that works, they will treat me with what I need. Of course that takes hours and all I can do is writhe in pain and vomit. I mean I know in what exact order I need to take what med to gain control of the nausea in order to keep any oral meds down. Inevitably they won't listen to me and it won't work. Finally they will listen to me and I am usually better within an hour. Total waste of time, hospital resources, and insurance money. And of course there is always that doctor that wants to do an MRI, CAT scan or spinal tap. That's where I draw the line. I know this pain and it is not any different than what I always have. Can you imagine how much money that would entail for nothing? Believe me when I say there is nothing I hate more than the ER.

    I saw some article the other day about how instead of narcotics, we should be teaching ourselves some techniques that help you envision taking your pain and burning it, or burying it or something and that is supposed to make it go away. In that same hospital they had some woman walking the halls playing a "therapy harp." Sorry but that would do nothing for me but irritate me like most sounds do when I have a migraine! What will they think of next?

    Anyway, just wanted to tell you how badly I feel for all that has happened to you. I know there are good things in your future. Keeping you in my prayers.


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