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  #26  
Old 09-20-2018, 02:12 PM
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I know I’m being paranoid, but because of our son’s medical conditions and age, I’m extremely worried about his brain development and how this will affect his logical reasoning in the future. We’ve had to deal with this for so long because of his concussions from sports injuries, a chronic Lyme infection which causes brain inflammation that went undiagnosed for over a decade[...]Oh, our system is so broken.
I can't comment on most of this because I'm the wife of an inmate who was already inside when we met and thankfully he's healthy as a gosh-darned horse. But I have Chronic Lyme and when I read that, holy jeepers I can absolutely understand your concern. We can't get good care out here when it comes to Lyme, I wouldn't hold my breath on finding understanding/interested/informed medical staff inside. If someone says, "I'm scared because my son is in jail with cancer" everyone rallies and supports and has resources up the wazoo. But Chronic Lyme..."is that a real thing?" "how do they treat it" "how does it affect him?"**. Because the thing we want to be at the most stressful and anxiety ridden times of our lives are educators, right? Ugh.

I'm sorry this is happening, at one point in my life this story could have been mine. I was 8 when I contracted, 12 when the Chronic symptoms started to show, 19 when I was thrown into the mental health system because they ignored Lyme then. I'm now 40 with a laundry list of specialists but also hope. Hang in there, mom. This is hard. The illness alone is hard. I know it's exhausting to add in the incarceration bit but if you can find a community advocate to help you explain the impact Lyme has to his attorney, this might be able to impact his sentencing. It's worth a try. Big hugs and so much empathy.


**For those wondering the answers to those questions-- yes, it's real. treatment geared at eradication is shockingly bad at best and illegal at worst. As far as how it affects us-- take the virulence and pain of cancer, the randomness of MS, the mental and emotional impact of personality altering brain disorders and the fatigue of narcolepsy and blend it up. Take a big drink. You're now in Chronic Lyme and probably allergic or highly sensitive to everything that you come in contact with.
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Old 09-20-2018, 02:22 PM
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Or you can be like a friend of mine who, when his chronic Lyme's flares, gets epileptic!
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Old 09-20-2018, 05:26 PM
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My first husband, my kids' dad, has it too. They just diagnosed him, so don't know how long he has had it. My daughter suggested it as he has so many things wrong with him for the past few years - arthritis, gout, nerve pain, short-term memory (that could also be the alcohol), joint and bone pain, numbness, chills, fevers, fatigue. Hard to know if his brain swelled, but that also happens.

Yup, Lyme's disease is real and it can go undiagnosed for decades. When you first get the tick bite, the test won't even show you have it for at least 6 months and then you can get a false negative. If you know and start on antibiotics you can prevent this, but most people don't know.
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Old 09-20-2018, 06:48 PM
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I have a supply of doxycycline.....if I've had a tick on me for just an hour, two doxy immediately, then another 12 hours later and so on for 3 days. Haven't had Lyme's for 25 years since my first case decades ago. And considering that I live with multiple animals and ride through tall grass, barberry (they just LOVE to hang out in barberry) and have come home with multiples on my clothes and animals, I think that trick does it for me!
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Old 09-20-2018, 09:32 PM
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I can't comment on most of this because I'm the wife of an inmate who was already inside when we met and thankfully he's healthy as a gosh-darned horse. But I have Chronic Lyme and when I read that, holy jeepers I can absolutely understand your concern. We can't get good care out here when it comes to Lyme, I wouldn't hold my breath on finding understanding/interested/informed medical staff inside. If someone says, "I'm scared because my son is in jail with cancer" everyone rallies and supports and has resources up the wazoo. But Chronic Lyme..."is that a real thing?" "how do they treat it" "how does it affect him?"**. Because the thing we want to be at the most stressful and anxiety ridden times of our lives are educators, right? Ugh.

I'm sorry this is happening, at one point in my life this story could have been mine. I was 8 when I contracted, 12 when the Chronic symptoms started to show, 19 when I was thrown into the mental health system because they ignored Lyme then. I'm now 40 with a laundry list of specialists but also hope. Hang in there, mom. This is hard. The illness alone is hard. I know it's exhausting to add in the incarceration bit but if you can find a community advocate to help you explain the impact Lyme has to his attorney, this might be able to impact his sentencing. It's worth a try. Big hugs and so much empathy.


**For those wondering the answers to those questions-- yes, it's real. treatment geared at eradication is shockingly bad at best and illegal at worst. As far as how it affects us-- take the virulence and pain of cancer, the randomness of MS, the mental and emotional impact of personality altering brain disorders and the fatigue of narcolepsy and blend it up. Take a big drink. You're now in Chronic Lyme and probably allergic or highly sensitive to everything that you come in contact with.
Got bless you, God bless you, God bless you! I was so hesitant to even mention that diagnosis on here for all of those reasons... you’re making me cry because of your compassion. That’s what my disability is, chronic Lyme. I just got diagnosed 3 years ago, but my symptoms began in 2004. My Lyme literate doctor (LLMD) believes that my son and I were infected at the same time which was 2004 when we lived on the east coast, and only now is the research coming out about how badly Lyme can affect the child’s or adolescent’s brain. So much research just came out about suicidal ideation, depression, impulsivity, and Lyme. The most comprehensive paper just came out about a week AFTER my son had his mental breakdown that got him thrown in jail. Looking at all of the symptoms and knowing the ones most young people have, NO WONDER THEY SELF MEDICATE. After living through this myself, I can’t believe that I DON’T self medicate. I’m going to hop on my soapbox now for people reading this who don’t know about Lyme.

For more info about the mental issues Lyme and co-infections can cause, google “Lyme and depression” and Dr. Robert Bransfield, Dr. Rosalie Greenberg, and Dr. Daniel Cameron if you’re interested. Can you imagine? My son has probably been dealing with an active Lyme infection since he was 4 years old, and all of the doctors missed it. That means chronic brain inflammation for overa decade in a growing child! We have spent literally hundreds of thousands of dollars of our own money on his various treatments and “programs,” and it wasn’t until about a year ago that anyone in our area was knowledgeable enough about it to even suspect he had it. He still didn’t receive treatment because he and my husband stuck their heads in the sand. I understand why they did it. After watching what I’ve gone through all of these years, who would ever want to admit to themselves that they had this disease? Instead, my son has been seeing psychiatrists who know nothing about Lyme and co-infections and have been giving him psychotropic medicines which aren’t helping. Why would they help? He has brain inflammation and major immune system problems. They’re treating the symptoms, not the disease. If we still lived on the east coast where it’s endemic, we would have probably figured this out years ago, but where we are, people are clueless. I mean, my own doctor didn’t realize I had it until about 5 years ago and only found a test he trusted about 3 years ago. He has been learning because of so many patients who were sick coming to him with unexplained symptoms, and he was our last resort. That’s how I ended up there. He started putting things together and realized almost all of us were suffering from the same thing. Most of us ended up having Lyme and co. Amazingly, a few years ago my test DID come back positive which is almost miraculous even though I do have a textbook case of the disease. However, neither my son nor I had a bullseye rash ever. I CANNOT BELIEVE HOW FREAKIN’ LONG it took to get a diagnosis for us. I can’t tell you how many blood tests I’ve had over the years ordered by clueless doctors, mostly for thyroid or diabetes. They all came back perfectly fine. No one even thought to look for Lyme.

Just getting a positive test is almost impossible because the tests are so unreliable, and if you don’t test at the correct part the life cycle of the spirochetes, then the test will come back negative. (The disease is caused by spirochetes instead of a virus or bacteria. They’re creepy.) What’s stupid is that they can just take a blood sample and culture the spirochetes, and even though that’s simple and reliable, no one does it! The politics and hidden agendas of the doctors working with the CDC for so long have blocked real Lyme research and diagnostic techniques and have made life a living hell for many Lyme patients because they are unethical and trying to make money off of patents for medicines and vaccines. There is now a lawsuit against them, but of course no one knows about it except the people who have Lyme or love someone who does, just like no one is talking about prison reform unless they are involved in it for the same reasons. The press doesn’t seem to care. The petitions needed to prevent these problems are not getting signed. (Carl Tuttle, the only person who seems to be able to articulate what is really going on, is someone who needs to have a voice on the national stage. I read and sign everything he writes or endorses.) The insurance companies have also been involved in keeping things about Lyme quiet because they don’t want to have to pay for our over-the-top medical bills. Yes, Lyme and other tick-borne diseases are incredibly complicated, but they could have come up with a cure or at least more effective treatment years ago if it weren’t for unethical people like a Gary Wormser, Alan Steere, and the other evil people involved with the CDC and the insurance scam.

I really can’t believe that you know about Lyme and all of the problems that go with it! I haven’t even told most people I know that I have it because they wouldn’t understand, and I don’t have the good health or energy to bother to explain. I wasn’t trying to sound mysterious or anything, I just never DREAMED anyone on here would know what I was dealing with. Again, GOD BLESS YOU! Now maybe people will understand how serious this situation is. You’re right about the cancer thing too. If he had cancer, we would be totally supported. It’s a no brainer. But because of those nasty people who decided to sweep this disease under the rug decades ago for their own profit, no one understands the desperate need my son has to be treated. If he needed chemo, you know they’d make that happen. Lyme treatment, NOPE. My LLMD is willing to go to bat for him at any moment, but because the diet has to be so restricted in order for treatment and because NO ONE UNDERSTANDS HOW SERIOUS IT IS, he’s just going to sit in jail and get worse. Despite what the CDC says about it, the protocol of antibiotics to treat chronic Lyme for a couple of months does NOT work for most people. Believe me, I’ve tried it. I tried it for 9 months and felt fantastic for the first 8. Then my body started freaking, and I couldn’t take them anymore. (The problems caused are TMI, or I’d share. You don’t want to know.) I was lucky enough to have insurance that actually covered many, many months of antibiotics which out of pocket would have cost thousands of dollars, and it still didn’t cure it. Eventually most people’s bodies can’t take all of the antibiotics anymore, and the Lyme spirochetes that have been hiding in biofilm in your fatty tissues (like your BRAIN) come back with a vengeance once you have to stop the antibiotics. I’ve lived it.

The spirochetes are amazing little screw-like microscopic creatures that can bore into any of your tissues. It’s a lot like syphilis in form and in the fact that it eventually can drive people mad, cause blindness, and appear in many different forms. Just like syphilis, doctors and researchers are starting to call Lyme disease “the great imitator” because it presents in each patient differently and can mimic so many other diseases. However, that Lyme spirochete is a much smarter little buggar than the syphilis spirochete. It can hide in tissues and biofilm and create a nice little hiding place whenever our bodies are given anything to kill it. Also, when you DO manage to kill off some of the regular spirochetes, you can actually die from the build up of the DEAD spirochetes which become toxic. If you don’t detox well enough, it can cause a herxheimer reaction (we call them herxes) that make you feel like you’re dying (believe me, I thought I was when I had my first major one) or can actually cause death. And that’s just from the antibiotics or herbs to treat the disease. Currently there is no actual cure, just treatment, and people with certain gene mutations can get hit a lot harder than others, so not every Lyme patient will be affected as badly as others. I WISH I were one of the lucky ones that could say I’ve been in remission, but that has never been my experience. Researchers have also found that Lyme can be spread by certain types of MOSQUITOES (which is terrifying) and that it’s spreading much faster now because bugs are moving because of climate change. One more fun note... researchers now suspect that it may also be sexually transmitted like syphilis. Un-freakin-believable.

As you can imagine, I’m now having a huge flare and can barely walk or sleep because of the stress in my life. I’ve stopped treating for a while so that I can just try to build up my immune system. I’m sure you know what my coffee table looks like with the 50 bottles of supplements that I have to take every day, not including the ones that have to stay in the fridge. Insurance pays for none of my supplements, some of which are $50 a bottle. I consume no sugar, gluten, caffeine, alcohol, or carbs because of this stupid disease. My allergy list is off the charts, literally. There are so many foods on my list that my card I got from the allergy testing company to take shopping is completely full and says, “see additional lists” on it. I am mostly housebound. I have heart trouble, and my joints don’t work. For years my doctors believed I had breast cancer. Now we know that I have cysts because of Lyme. I used to ride horses every day, hike for miles, go camping, dance, volunteer in my community, teach, and have a social life. All of that is gone now. It’s slowly been taken away by Lyme. My pasture is empty, and I have a cane. I can’t even carry a laundry basket upstairs, or vacuum, or stand up long enough to cook or shower. There is no possible way I could hold down a job. Thank God my husband is handy and was able to put in a handicapped tub for me, or I’d hardly ever even be able to get clean. I have brain fog like you wouldn’t believe and can barely read a book now even though I used to be a biologist and teacher. I used to love to read. Now it’s “Netflix and ILL” because there’s so little I can do. Now imagine what this same disease that I have has been doing to my son’s growing brain for 14 years without any treatment. Because the medical community is so ignorant about Lyme and co-infections because of those hateful people who took charge of the narrative decades ago, we didn’t even see it.

Our lawyer doesn’t even want the doctor’s testimony about my son having Lyme, and my husband is sure that it won’t make a difference. I have medical journals and research papers by the dozen and four Lyme professionals to back this diagnosis up, but because it’s so unknown here, my son will probably end up going for a plea deal and will end up missing out on treatment, probably for years.

I feel so unbelievably helpless, and I’m so incredibly frustrated and sad that no one recognized that my son had this earlier. I believe in my heart that this could have been prevented if he had been properly diagnosed and treated years ago. He could have had a normal, happy life instead of being crippled by depression which he was diagnosed with at 6 years old. What normal 6 year old has depression and wants to kill himself? There is a special place in hell for Wormser, Steere, and all of the other people who were hiding information about this disease to make a buck. Everyone in the Lyme community knows about these crooks. I just don’t understand why the media hasn’t picked this up... it’s going to go down in history as one of the biggest medical crimes ever. The CDC is FINALLY admitting that instead of 30,000 people a year being infected, it’s 300,000, and I’d bet big money that a lot of the gun violence, mental health issues, and addiction problems we have today could be explained in some part by Lyme. The guy who shot up the babies in Sandy Hook? He lived about 30 miles from Lyme, Connecticut where this disease was first discovered when a bunch of children started having symptoms of arthritis and where almost every family has been affected by Lyme in some way at this point. Everyone in the Lyme community believes that young man was suffering from Lyme and co-infections. I believe the deaths of those babies’ are on the souls of all of those unethical doctors and members of the CDC and insurance companies that colluded with them. After seeing and hearing that story and the very likely connection it has with Lyme, I can only thank God that my son is only suicidal instead of homicidal.

Off my soap box.

Last edited by Mama33; 09-20-2018 at 10:01 PM..
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  #31  
Old 09-20-2018, 10:12 PM
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Or you can be like a friend of mine who, when his chronic Lyme's flares, gets epileptic!
I have a friend I met in the Lyme community whose son contracted Lyme & co as a young teen who has terrible seizures and is also suicidal. He was featured in the movie ďA Ticking Time Bomb.Ē They show him repeatedly having seizures.

Thankfully he is doing a little better now, but he is now in his 30s and has lost so much of his life to these diseases.

This woman has been such a great help to me and also knows the complete panic of worrying about your son constantly trying to commit suicide.

We know people who have had brain surgery when the doctor thought there were tumors, and when they went in to look, it ended up just being holes filled with fluid and Lyme spirochetes. Other people have needed heart transplants. A friend I grew up with has three children, and she, her husband, and all three of their children have it. Her oldest son, a teenager, is having ďheart episodesĒ and is on a monitor.

Thank you so much for commenting. I canít believe so many people on here actually know what Iím talking about! I appreciate the support so much.
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Old 09-20-2018, 10:20 PM
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My first husband, my kids' dad, has it too. They just diagnosed him, so don't know how long he has had it. My daughter suggested it as he has so many things wrong with him for the past few years - arthritis, gout, nerve pain, short-term memory (that could also be the alcohol), joint and bone pain, numbness, chills, fevers, fatigue. Hard to know if his brain swelled, but that also happens.

Yup, Lyme's disease is real and it can go undiagnosed for decades. When you first get the tick bite, the test won't even show you have it for at least 6 months and then you can get a false negative. If you know and start on antibiotics you can prevent this, but most people don't know.

I have all of the same symptoms and more except for gout. I wonder if the alcohol use was his way of self medicating? The only over the counter remedy I came up with that actually helped my arthritis pain was 3 Advil and a glass of wine. One of my brothers who is a doctor threw a bucket of water on that treatment and told me that it will damage my liver and to stop doing it. I have yet to find something that will help as well.

I finally did get rid of the fevers and constant feverish headache when I was on the antibiotics, and thankfully that hasn’t come back. I do still get headaches, but not every moment or feverish ones like before. I think those are symptoms of babesiosis which is a Co-infection of Lyme, but I’m no expert. Usually when someone gets infected, it’s with more than one tick-borne disease, and each has to be treated differently.

I can’t believe this is my life. It’s no fun to feel like you’re 80 in your forties.
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Old 09-20-2018, 10:39 PM
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I have a supply of doxycycline.....if I've had a tick on me for just an hour, two doxy immediately, then another 12 hours later and so on for 3 days. Haven't had Lyme's for 25 years since my first case decades ago. And considering that I live with multiple animals and ride through tall grass, barberry (they just LOVE to hang out in barberry) and have come home with multiples on my clothes and animals, I think that trick does it for me!
Oh, what a blessing for you! I am so thankful you caught it early and know what to do! I wish the antibiotics would work for me. I would love to be even just 50% of myself again.

We were always in the woods and mountains of Virginia, had dogs, cats, and horses, and had deer and other animals right outside our back door. Our doctor believes thatís where we contracted Lyme & co. because thatís when our symptoms started. I had no idea anything was wrong until I started to have sleep problems and then started getting pneumonia every 3 to 6 months. At the time I had a 4, 3, and 2 year old and was a stay-at-home mom. (My salary wouldnít have covered daycare.)

Thatís also when my son started having behavior problems. He was always a very smart, active little guy, but he started to be obnoxious and disobedient. He was so difficult to handle that he actually made one of his pre-school teachers cry. I wish I knew then what I know now. It would have been so easy to change our diet and treat him, and then this entire mess and sadness over the past 14 years could have been avoided. Hindsight is 20/20, right?

We were so familiar with some of the deer in our backyard that we saw every day that we named them. It was such a sweet time with three little babies. I look back and kick myself now for not suspecting Lyme disease, but I guess it just wasnít on my radar.

We spent so much time in the woods behind our house, and though I donít remember ticks or a rash at all on either one of us, there were a ton of mosquitoes. Iíll never be able to pin down exactly how I got it, but knowing that mosquitoes can carry it too is terrifying to me.

Thanks so much for sharing your story. I donít usually hear good ones.
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  #34  
Old 09-20-2018, 10:41 PM
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Yes, Lyme and other tick-borne diseases are incredibly complicated, but they could have come up with a cure or at least more effective treatment years ago if it weren’t for unethical people like a Gary Wormser, Alan Steere, and the other evil people involved with the CDC and the insurance scam.
So much I could respond to, but this ^^^ is something that you only feel a special rage for when you're infected or loving an infected person. For people who want to know what we're talking about, give the movie "Under Our Skin" a view. It's depressing, but it's our life and it's a life far too many people don't know about when the risk of contraction is so very high.

I had joint and skin involvement from age 8 to 17. And then a few weeks after my 18th birthday, I had what they referred to as a psychotic break at work. Looking back, I can give you a thousand build-up moments that are classic Lyme and would have kept me from being put on ridiculously heavy anti-psychotics. Those meds, which did nothing for my physical discomfort and in fact added to it-- 60lbs put on in under a year, tardive dyskinesia, headaches that made me want to put my head through a wall because external pressure was the only thing that relieved the pain. I was suicidal, I would lie in bed and wail from the pain and the emotional torment. I can't imagine the stress this put on my parents, they were scared sh*tless for me. This was not their daughter. I was social, very active in spite of my physical health, never turned down an invitation and was looking forward to college. But because I was snatched up by a psych diagnosis and put on the pharmaceutical treadmill, my life was essentially high-jacked for six years. I managed a relationship and to get married at age 24 and decided that with the support of my husband I would get off of all meds and for the first time feel what it meant to be myself-- not a pilled up version. And surprise, I was fine. I mean I still had swollen knees and stiff hands and weird rashes. But my mental health improved almost immediately. I still suffer bouts of anxiety, but that's par for what I've been through and what my body perceives as constant threats (living in fight or flight is not for the weak!). The last 12 years have brought new physical complications, but I've got the best help I can get without traveling and paying out of pocket which isn't an option for me.

I don't want to take this thread too far off-topic because the focus is your son and his current circumstance. But if you'd like to hop over to this thread, I'm MORE than happy to continue the conversation with anyone interested. I am sure that the toll this has taken on your own health is immeasurable and I know your son would want you to be doing everything you can to take care of you. I also know how hard that is when things simply must be done.

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Old 09-20-2018, 10:44 PM
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Thank you ALL so much for telling me your Lyme stories. This disease is so isolating, and there are so few people who even know what I’m talking about. I’ve been researching the effect of Lyme and co so much lately, and all I’ve been hearing is that nothing can be done. It’s been disheartening and frustrating.

I’m sorry that any of you have to deal with these diseases, and I wish you didn’t, but you’ve made me feel so supported and so much less alone. Thank you from the bottom of my heart.
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Old 09-20-2018, 10:51 PM
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Originally Posted by miamac View Post
So much I could respond to, but this ^^^ is something that you only feel a special rage for when you're infected or loving an infected person. For people who want to know what we're talking about, give the movie "Under Our Skin" a view. It's depressing, but it's our life and it's a life far too many people don't know about when the risk of contraction is so very high.

I had joint and skin involvement from age 8 to 17. And then a few weeks after my 18th birthday, I had what they referred to as a psychotic break at work. Looking back, I can give you a thousand build-up moments that are classic Lyme and would have kept me from being put on ridiculously heavy anti-psychotics. Those meds, which did nothing for my physical discomfort and in fact added to it-- 60lbs put on in under a year, tardive dyskinesia, headaches that made me want to put my head through a wall because external pressure was the only thing that relieved the pain. I was suicidal, I would lie in bed and wail from the pain and the emotional torment. I can't imagine the stress this put on my parents, they were scared sh*tless for me. This was not their daughter. I was social, very active in spite of my physical health, never turned down an invitation and was looking forward to college. But because I was snatched up by a psych diagnosis and put on the pharmaceutical treadmill, my life was essentially high-jacked for six years. I managed a relationship and to get married at age 24 and decided that with the support of my husband I would get off of all meds and for the first time feel what it meant to be myself-- not a pilled up version. And surprise, I was fine. I mean I still had swollen knees and stiff hands and weird rashes. But my mental health improved almost immediately. I still suffer bouts of anxiety, but that's par for what I've been through and what my body perceives as constant threats (living in fight or flight is not for the weak!). The last 12 years have brought new physical complications, but I've got the best help I can get without traveling and paying out of pocket which isn't an option for me.

I don't want to take this thread too far off-topic because the focus is your son and his current circumstance. But if you'd like to hop over to this thread, I'm MORE than happy to continue the conversation with anyone interested. I am sure that the toll this has taken on your own health is immeasurable and I know your son would want you to be doing everything you can to take care of you. I also know how hard that is when things simply must be done.


I canít believe youíve been through this too. I will definitely look at that thread! I can tell you from a parentís perspective that itís so much harder to know that your kid is suffering than suffering yourself. I am praying so hard for better treatments and cure.

Iím so glad youíve found a way through some of the worst of it. At least for me I was older when I contracted it. I canít imagine how difficult it is for a young person to get it, and to go through the teen years with it? What a freakin nightmare. Iím so glad you had the strength and heart to make a semi-normal life for yourself! That gives me hope for my son.
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