Chronic Pain Whatever the cause, support for managing long term or intractable pain.


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Old 04-23-2019, 05:49 PM #21
adelina adelina is offline
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Had to post. I'm in terrible terrible pain. Having a hard time eating can't move hands arms back and forth to feed myself. Was in really bad pain took Max of medications it's beginning to feel a little bit better then I ate a salad. I have a very hard time eating salads because of the repetitious movement. I primarily eat protein bars so there's not a lot of movement. But I have to eat salads because I have severe digestive problems. I'm just asking why why what? What have I done to deserve this? How can I battle it. I used to be a fighter I fought for my life since I remember. But I have no way to fight this pain. It's exhausting I slept for 12 hours last night. My pain just drags my body down. I can't sit up straight or walk around without making the pain worse. So I recline in bed which causes neck problems which causes migraines. If I lie all the way down I don't necessarily get the migraines but sometimes you do. I'm just tired. And hurting so much looking for something to feel better. so I don't know I don't know what I feel other than bleak. I'm not thinking about being dead today which I am grateful for. But I am thinking about my children. I haven't seen my middle daughter in over 5 weeks. I had hoped to see her this weekend but she has an event. She wants me to come to the vent but it lasts for hours and would require me to sit on Stadium benches. Which I can't do in this much pain. I am hopeful that maybe I won't be in pain that day or well of course I will be in pain but not this severe pain. But then I have to hope that my friend can take me down there. Which makes me a burden on her. I know I'm rambling. But this does make me feel emotionally better when I can get it out to someone and not just go over it again and again and again in my mind. I am sorry to take up people's time. But I'm hoping that those familiar with me read. And those has have red and not interested disregard. Because I really really really need an outlet. Without burdening my friends well the few I have. Currently I only talked with one friend and I don't want to overburden her. I have a couple of other online people I could talk to but feel bad doing that to them because all I ever have is a need for people to listen or in pain or boring or negative things to talk about. This makes me guilty feel guilty because friends are supposed to support each other which I did that but don't have anything but negative stuff about myself. That makes it difficult for me to share that stuff with people that I know because most people I have found out absolutely do not want to hear unhappiness from somebody over and over again. Thank you I feel a little bit better
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Old 04-23-2019, 07:22 PM #22
adelina adelina is offline
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I'm hurting worse. My neck is flared up I'm going to get a migraine I already have a headache. I'm posting because I could take a c b d right now. I have them but I don't use them because I'm afraid of them and my doctor does not support them and will take me off my pain meds if she finds out. I've only used them four times since I got sick 11 years ago but I'm in so much pain right now that if I can find them which requires a lot of movement I might do it I'm so conflicted. What would you do?
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Old 04-24-2019, 01:37 PM #23
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Adelina: Im just gonna give you my opinion.....I was once told that all another needed to do was hear me out....not take my advice.....so my asking you to hear me out and then make your own decision, I think will be ok....and I hope you do, too.
I have been keeping up with your posts and actually think of you even when I am not on this forum. I am worried and concerned for your mental health. You are NOT crazy, not at all, and that is NOT what I am saying. You are like some of us here on this forum, who are battling with such severe physical pain that it astonishes the mind. I know with my own pain issues that I sometimes refer to them as inhumane, because there is so much intensity to it, and I can't put it down and pick it back up again when I'm in a better state of mind. I have to attempt to function with it, and the smallest things, like keeping myself bathed and groomed and cooking some dinner and earning a little bit of money (I, so far, have not elected to collect disability, but it's impossible and my situation is not really good). All of that said, food and grooming are basic daily requirements and they absolutely overwhelm me often, because all that movement can throw me under the bus, even with medications and all the extra "stuff" I attempt. That said, I have to work hard to keep my perspective and frame of mind healthy and positive, and at times, I've not done well with that particular battle, and had to seek resources outside myself to help me get a handle on that. From what I'm reading here, I believe you may be in that place I can get to, and may benefit from talking to therapists. I also know there are doctors/therapists that specialize in working with patients who have extreme pain issues. I tried one here in my area, and our personalities did not match, so I didn't continue, and instead went with another, but I would not be opposed to seeking one of those specialists again should I find that I was not functioning well again. There is no judgment or criticism when your life is taken over by something you have no control of, and you don't get to enjoy what you used to, and even realize that you may have damaged the life you could have had in your reaction to what was going on with you. All of that, cumulative, is overwhelming to process inside your own head, and with only your perspective to depend on. I know that you're looking for feedback from us, your friends, here in a forum where many of us can readily relate to what you are going through, but having a person who is professionally trained to help you see what you cannot from your limited viewpoint could be invaluable for you.
Please consider reaching out to the professionals in your area. These issues and hurtful things (emotionally and physically) you are dealing with could get shined up with a new perspective and set of goals you and a specialist could work on together, and you might just find the answers you are seeking within yourself, and by and through guidance of someone trained to help you "see it.".....I will remember you in prayer, too!
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Old 04-26-2019, 02:33 AM #24
adelina adelina is offline
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CRPS thank you so much for reading my posts and thinking of me. That feels really nice to know that there is somebody out there I am connecting with. I believe you and agree with you that I need to see a therapist. Especially one that deals with chronic pain. Unfortunately I live in an area with limited resources but even more so than that I cannot afford to see one nor do I have a way to get to and from one. This does discourage me and what is often why I write here. I know I don't get feedback from many people and that hurts a little. But the primary reason I write is to get me out of my own head. Also to vent out some of the frustrations and fear I feel. That does make my mental anguish better. I don't feel good after I write but I do feel more relaxed and less oppressed. I really really do wish I could find a therapist to help me. I might be able to find one that would work with me and take just my insurance without my copay. But unfortunately I could not get there. I can't drive I do not have a working car. But I love that you offered your opinion. Thank you for that.
I had a fairly decent day today. My pain was so so not good but not terrifying. And one of the few times my pain medicine worked significantly. So I was able to talk on the phone to my girls and they are doing great. My youngest had a track meet today and she placed first in the high jump second in the relay and so so in a couple of other events. Both my daughters have a horse event on Saturday. It will be up in the air whether I can go or not depending on my pain level and the health level of my friend who drives me. Who knows I might be able to go I just hold it up in the air and be grateful if I do get to go. Saw my first Wild live rattlesnake today my dearest neighbor and friend caught it literally on his front porch where he lets his little dog out everyday. 3 foot long and absolutely gorgeous. I love nature and biology and ecology and most especially animals particularly reptiles so this was fascinating to see. All together made for a pretty decent day for once. I'm extremely grateful for it. Thank you for listening and talk to you all later.
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Old 04-26-2019, 04:19 PM #25
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Sounds like you've had an awesome day, and I am so happy that you've been able to do that!!!! I am still thinking, wheels grinding, so I'll throw out a few more things I thought of as I read your response to me.
1) My grandmother lived in another state and when she became blind and had to move out of her house (she lived there blind for too long, but my dad put his foot down as she kept leaving the stove eyes on and other things that made it dangerous). Anyway, she called me to come help her find a place to live (think she was mad at all her kids, lol). Anyway, the first place I took her in her state was something like Council on Aging, where we looked at all the resources they offered. Among them were in house visits for companionship, light cleaning, therapy, etc. This was free to the elderly. I don't know your situation well, but there has to be some way you can qualify for services for disabled, same as they offer some services to aging. If not governmental, how about churches? You should not live by yourself and suffer aloneness...if it's at all preventable....it's just "how" do we get that for you????
I hope if others are reading, they'll make any suggestions for resources I don't know about.

2) Is there any way you could move into an assisted living community of any kind? Have you looked into it or considered it? I know that I've had issues with my husband before and imagined that should he get on my last good nerve, I would like to live more in town in an apartment complex with assisted living resources such as having others for company, and little things going on daily that I could choose to take part in, or not....and most importantly, healthy meals that I wouldn't need to prepare for myself, as that would just be too hard for me.

I am wondering if you started calling around in your area to governmental places and churches with outreach programs and other places that assist or work with the disabled, could you not learn, just from making these calls and talking to all of these people out there, more about what might be available to you. Heck, if you're home alone with not a screaming loaded schedule, taking a little time to reach out around you may uncover a hidden gem for you.

Again, I am so pleased to hear that you had a good one....and the rattlesnake thrill....just wow. My husband and I watch a lot of those programs that "follow" animals in the wild and I watch Steve Irwin reruns like a crazy person...(I just adore his enthusiasm). When the snakes come on, especially rattle snakes, I always pause so that I can watch and study them....fascinating and makes my heart race a little just to see them! Their facial features are etched like autobots....so perfect. Oh, and the other night we started an Ocean series and the stuff in the ocean is just insane....God is amazing....I can't believe His imagination...and all the creatures He made....it's just so WOW! (world of wonderful!!!!).

May you have a perfect today, sis!!
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Old 04-27-2019, 08:42 PM #26
adelina adelina is offline
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Thank you so much CRPS. I thank you for your advice and you're helping me you are a lovely person. I live in a very poor rural County in California and do not qualify for any assistance that I have looked into so far. But I love your idea of the churches perhaps they can lead me to something that would be helpful so I will look into that. I am not religious but I do believe there is a higher power . And a unifying belief and strengths that connects all people of all religions and types . I had a spiritual experience once and I know that there is something out there that guides all of us. are also no communities I could live in like you suggest. And I don't want to move further away from my children. There is a county nearby that would have more available for me probably possibly. But it is much more expensive to live there and much more difficult for my children to get to. It's funny well not really but kind of I live in one of the poorest counties in California next to some of the most affluent counties in California. I love communicating with you and I will look into the possibility of getting other help. It's quite likely that I could find at least someone there who could help me with talking out my anxiety and depression and frustration. That would be really nice. I am an animal addiction person. I have always been fascinated by Nature and follow many rescue sites and animal sites online. And about half of my shows that I watch on TV are about nature in some way. I love Steve Irwin to. I was so devastated when he died. But his legacy continues with his family and his shows continue to inspire me to this day. My dream since I was a little girl was to do animal rescue of some sort. That is one thing that is very hard that I cannot do that anymore. But most of my pets have been rescues and I'm grateful for that. I also love to reach out online and share my rescue sites with other people. If you're interested in that PM me. There are some wonderful stories letter very uplifting and funny and heartwarming and sometimes sad. But I've really been doing the online thing for the past couple of weeks and it does help me emotionally. To see other people taking up the cause that I feel so strongly about. I am in a lot of pain today. My girls did not have their event today I was misinformed and it's tomorrow. I hope I can go but we'll just have to wait and see. I really think that coming to this site has helped me mentally and emotionally. With you reaching out to me CRPS I feel a connection. Thank you for being there I really mean it.
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Old 04-28-2019, 10:01 PM #27
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Hi Again A: I'm actually afraid to type your name as I spell worse than a 5th grader (lol...spin on the show, which always humiliates me!). Im wondering if you saw your kids and also if you are feeling any better? I literally KNOW that with my issues, when I get upset about things, the more upset I get, the more involved my nervous system gets. Try as I might, I still get upset sometimes, but I always pay, and always vow to never get upset again (here's where I laugh at myself...so futile!!!).

As to the church thing.....I am a Christian, and I do know a lot of churches that have outreaches in our area....and they love people....I mean they LOVE them!! Your not being a Christian shouldn't prevent you from learning of their services to the community at large or even greater, learning of services they happen to know about, just because they are service oriented. In the past, churches believed it was their responsibility to care for the sick and the poor among us, and some are still very good about doing that (as able). So.....nothing ventured, nothing gained....my sister in pain......A lady in our area reached out to me and offered her entire church to come to my house and help me one day with whatever thing(s) my husband and I might need....I never took them up on it, because we just plug along....but I do so appreciate that in humanity!

I am really hoping that just by reaching out to any and every one, you might find a gem somewhere....one that doesn't make you qualify, but takes you on your word that you need various services.....Also, my mother in law moved into an apartment building where her rent is only a couple hundred dollars a month and she is just a single woman who is at retirement age now and doesn't make much money. I don't mean to frustrate you by continuing to suggest you reach out JUST TO BE SURE...and it's possible you already know everything out there and don't qualify for any of it....but it's also possible something is out there waiting for you and could I ever express my thrill if we found out that was the case? I don't like to see a sister in pain suffering just like I suffer sometimes.....and if anything is out there, I want you to have it!!!
I have been having a series of terrible pain nights. I have trouble going to sleep because the nerve pain is so raw and constant, then by around 5 in the morning, I am up, because my body is wracked at that point and even though I want to finish sleeping, I can't...the pain is just too intense. This sets my days up for trouble, because I dont get good rest. Also, I am angry at my husband today, which doesn't bode well for tonight's rest (sigh!!!). Here's to a good Monday for both of us!!!
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Old 04-29-2019, 12:54 AM #28
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Just checking in for the day. I was not able to go to my girls events. I woke up this morning with vertigo. I've never really had this before but I know immediately what it was. It made the day difficult plus I developed a headache throughout the day. My arms were up and down today but averaged around moderate. I was really distracted about the vertigo. It made things kind of hard to do. Because it would hit at strange times. Most particularly if I bent over. I did some reading up and of course it could be my inner ear. But so far I don't feel any thing in my ears. I have long suspected that I may have a CSF leak. I have many or most of the symptoms. If this vertigo continues I need to get in to see my doctor. Emotionally today I'm stable. I don't feel good or bad. Tired and blah. The nausea from the vertigo is distracting. And of course me being a paranoid hypochondriac can't stop thinking about why I have the vertigo. But when my mind shuts up emotionally I'm okay. I'm sad I missed my girls events but not destructively so. I guess that's it I just wanted to check in with those of you who are keeping up with me and again thank you for listening...
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Old 05-03-2019, 12:31 AM #29
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Hi CRPS! Somehow I missed your post on Sunday. I don't know how but I did. I've been checking to see if anybody has posted anything to me and I haven't receive or noticed that somebody had posted. That got me a little down but then when I came on today I saw that you had posted on Sunday and it lightened me up. You are such a wonderful person. You're being so actively involved in these suggestions and ideas. And I really really appreciate it. I am so sorry for your pain. It sounds like it is fairly terrible for you to. I'm very glad you have your husband church and Friends there for you. I'm glad that your pain doesn't get you as down as I get. I have been very very up and down with my pain this past week. It's very up and down throughout the day. Which is unusual for me. Normally my pain stays consistent for most of a day. And if anything it gets worse as the day goes on and the more I move. I am so so so lucky and so so so so grateful that most of my nights are pain-free. Yes that's right when I fall asleep I am relatively unaware of my pain. I would say 8 out of 10 days once I fall asleep I sleep great. But I definitely have those days where I hurt too much to go to sleep or I wake up in bad pain. But those don't stress me out too much. The problem I have with sleep is that it takes me two to four plus hours to fall asleep every single night. I know that stress is the primary problem in this or the fact that I do not exercise or have that much of a physical active life. I've suffered insomnia since I was Young. Probably starting from when I was about 10 years old or so. It has gone up and down throughout my life. Now is that the worst that is ever been. All the more reason for me to get therapy help. I so love your idea about the churches. It's actually a church in my old town that I lived in that helped me move when I had to move a couple of years ago. The people were very helpful and didn't treat me different because I am not a practicing Christian. In fact we had a few prayer sessions and at least one decreased my pain significantly. I truly believe in the power of Prayer. I have been unable to make calls recently because of the pain but it's on my mind all the time. I am hoping that will lead to some sort of support or therapy. It is my hopes that someone will know of a way I can find help. Thank you CRPS. Because you inspire me. I have not had that in so long. Thank you thank you thank you. I am also hoping that contacting the churches will maybe find a social outlet for me. If people can accept that I believe in a higher power but don't practice a specific religion that would be wonderful. I would really like to make some new friends. I would like to find a reason to better my life. Nah that sounds really negative to me. Like I don't have a life worth living if I don't have friends in it. And that's not what I mean. I just feel so alone or isolated. It would be nice to Simply have someone to talk to.
I get to see my youngest daughter this weekend. My middle daughter is busy. Which is good and I'm proud of her active life and involvement. She wants to become a veterinarian and is 16 and involved in sports and music and FFA and equestrian riding and doing veterinarian competitions. And she's so smart she has mostly A's with some bees and doesn't even have to study. I couldn't be more proud of her. My youngest will be 13 in July and is also incredibly smart and busy with FFA and equestrian riding and wrestling and track and field. I'm so proud of them both. My oldest child my son will have nothing to do with me because he thought that I was ganging up on his father when we separated. He's adopted and has severe attachment disorder and has a very hard time dealing with his emotions and connecting with people. My oldest daughter is also adopted and has severe attachment disorder. She is also the biological sister of my son. I am very happy that she has a very close relationship with her brother. She and I did not talk for a while. And for a good reason I took out my anger sometimes on her. I know why I did it and I am extremely sorry and have apologized to her and explained what I was going through. And so we started talking again. This went on for months and it wasn't easy but we were making progress. And then suddenly I started disagreeing with her father my ex-husband and he and I began to fight as you could say. At the same time she suddenly stopped talking to me or returning my phone calls. I had spoken to her twice since then and she has never explained why she stopped talking to me. She said that she sometimes felt uncomfortable talking to me on the phone that we had nothing really to say. And I can understand that because even I sometimes felt awkward on the phone but seal called her every couple of days to see how she's doing. And I have not been able to talk to her again because she still does not return phone calls. I actually did talk to her once when I was talking to my youngest daughter and she walked in the house. And I didn't talk about any subjects then I just wished her a happy birthday and told her that I was proud of her and loved her and missed her. And then let her go back to her birthday celebration. Talking about this makes me feel like a total screw-up. I know deep down inside that my oldest children have issues that can't really be helped a whole lot in phone conversations. I don't have the ability to go down and see them. But I try to do everything I can over the phone to connect with my oldest daughter at least. My son won't talk to me at all. Even though I know the logical reasons for my older daughter oldest daughter not talking to me. It's my responsibility to keep trying to connect with her. But sometimes I just don't know what to do. I have spoken with her twice in the past 5 months. It is very disheartening trying to connect with her. I know my friend would drive me down to see her but I can't even get her on the phone to arrange a time and place to meet. Anyways I've gone off on a tangent again haven't I. It's just that the topic of All My Children has been on my mind significantly lately. Thank you for listening.
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Old 05-03-2019, 10:40 PM #30
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Please give me the strength to fight for my children. My ex-husband is extremely emotionally and psychologically abusive. He is especially that way to my oldest daughter and my youngest daughter. I lost all my rights to my children because I did not fight for them in my divorce because I was psychologically terrified of my ex and had no self-esteem to fight him. Now I want my rights back because my children are being subject to abuse by him. He's not all bad he does many things right. But emotions are not something he handles well and he takes his anger and stress out on those around them which are his children. He used to take it out on me which is why I kicked him out. Now he does it to my girls. I am trying to take him to court but have no resources to financially achieve this goal and have to use this self-help legal Resource Center. It has limited hours and days and it always seems to conflict with my pain or my friends pain who takes me places. I have filled out all the paperwork and have had to tried to have it served one time but they returned it to me saying they didn't have time to serve it before the court date. So now I have to start over. Which is fine because the incident that just happened was terrible for my daughter my youngest daughter. She was on the phone with me when we realized her sister's dog my middle daughter's dog was not around. My youngest absolutely panicked became terrified that he was dead on the highway because they live next to the highway and was crying. Herself her aunt and I also tried calling my ex-husband to see if he knew what was going on but he would not answer his phone. A little while later I called his phone for like the fifth time and my youngest answered it. She was extremely upset at this time as my exit had the dog all that time and didn't let anyone know. Not only didn't he apologize for that but he was actually smirking and mocking her and laughing at her for talking to me on the phone about how upset she was about him not letting her know where the dog was and not caring that she got upset and scared. He is just horrible in regards to emotions. He is very very demeaning to me in front of the girls and they need to know that it is not right for him to treat them or me that way. The thing is he makes a ton of money and is extremely manipulative. He is or appears to be your typical nice guy. He has told other people that I am a drug addict and a drunk. And has even told children that I am a terrible monster. He's very very vindictive and I've got to find the strength to fight him. A lot of times I don't feel like I'm worth worth me trying to be important in my girls lives. Does that make any sense at all? He constantly emphasizes on how worthless I am to the girls. And I let myself believe it at times. It's a difficult battle for me because I really have nothing to do with their lives. But at the same time I do know that they need me to balance out his psychological abuse which is what prompted me to start to take him to court. Which is what I'm going to have to really focus on now and I'm asking for strength.
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