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    Old 11-25-2006, 07:49 AM   #1
    babs17
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    Unhappy Take a moment. Help. Pain never controlled.

    This is long...but pleasseee, take a moment.

    Since I have been reading these boards (the past few weeks), I have found wonderful support. Thank you, seriously. having a tough day today.

    However, a part of me is very discouraged. I had a fusion at T7-T8 4 weeks ago, my lung was collapsed (chest tube after surgery) and reinflated, and one of my right ribs was used for the donor graft for the fusion. I had to use a walker for 2 weeks, I have a RN, home health aid, and physical therapist come to my home 3 times a week. I am wearing a brace (shell) until the end of Jan. And my pain is always there. It has not gone below a 7 since surgery. I thought it is how its supposed to be. I am taking Vicoden 7.5 one to two every 6 hours for pain. The first week home was the worst and most painful week in my life. I could barely breathe...to be honest. Thought I just made the biggest mistake in my life. In the hospital after the pump was turned off, they gave me 2 Percocet every 4 hours for pain. That too, was like a band aid, but I was just thrilled that the chest tube was out b/c that was unbearable. Really unthinkable. I am glad I couldn't move b/c I would've went out the window.

    The pain has been slowly getting better, but I am always in pain. To me, a 7/8 is me medicated. Like I said, I feel like I am getting better, than last week, my mid back just gave out on me, and I was at a 10 for 5 days (I am a quiet sufferer due to many my strong personality)...I thought I just pulled a muscle during PT. At day 6 I called my docotr and asked to come in for an emergency appointment. They took me and ordered me to see a pain mangement / physiatrist. I asked if my pain meds could get any stronger, and they said they preferred that their patients not get anything stronger b/c prescribing stronger meds is like a circle, and the stronger the meds that the patient gets, the more you have to prescribe. I just shook my head and said ok. I thought this sounded reasonable for some reason. But now I am a little discouraged after reading post after post.

    Not to compare myself, but I have been reading these posts and it seems that my options for pain management is not being covered as well as others. I have been a back sufferer for 5 years. Its usually my lower back (Mod sized hernations at L3-L4, L5-S1...spinal stenosis starting at S1...annular tears in that area too) , but this operation was for my mid back....my mid back has been ailiing me since Feb. I have just dealt with the lumbar area for 5 years.

    I don't know if I just present myself differently than others. I am a crack up...I smile alot and am very social. Can't help it...its my personality...my family tells me that I never look like I am in pain. But if I am not being like that, than I feel like I am "acting"...and thats not my thing. I really want help with my pain....you guys seem to understand the most b/c you only see my words...so you don't get to judge my face, etc...There was only one doctor that ever took my pain as serious as it was. It was my Workers Comp doctor 4 years ago. Bless that man! He knew how hard I was trying to get better. How much I suffered trying all these alternative treatments to avoid a lumbar fusion (which I did ). In my mind...if you can't move...you can't recover. I just want someone to get me moving better!!!

    I am still looking for a pain management doctor in my area. I am putting alot of thought into this b/c I have not been helped yet. In my mind, I always thought the "heavy hitters" like Oxy and MsContin, Fentayal patches, and others that I have never even heard of but raed here..were reserved for Chemo-type patients. But I am reading that many people on this borad take them. Gotta tell ya...surprised the heck out of me. I don't even know what I need.

    Example...last March I saw a physiatrist (she liked giving injections). Anyway, I was on Neurontin (helped), and Celebrex (helped alot since Vioxx off the market), so I asked for something for breakthrough pain. She gave me Ultram. My next appointment I told her that it was def. not working, and it was hard to go thru with my PT regimen due to the pain increase. So, she gave me Percocet 2.5mg every 6 hours. I ended up just taking Tylenol 4grams a day...which I know is the limit. However my dad had the flu and called his doctor, and they gave him 5mg Percs every 3-4 hours for his flu pain......is it b/c I am a girl??? Sometimes I wonder. Anyway, this is my experience with pain control thus far for 5 years.

    Besides venting...anyone have some advice for me???? I am known as a funny girl...honest as hell, analytical, and always on the move (used to). Thats me. AM I just presenting myself wrong, or have I just not found the right doctor?? I don't think I knew how undertreated I was until I came to this forum. Or, am I not??

    be well

    babs

    Last edited by babs17; 11-25-2006 at 07:57 AM.

     
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    Old 11-25-2006, 11:37 AM   #2
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    Re: Take a moment. Help. Pain never controlled.

    Babs, I'm really surprised that your surgeon wouldn't give you Percocet! My doctor didn't blink an eye when I asked for refills of the Percocet. I just went down a step to Vicodin on Wednesday evening, at my own request to get onto something less strong. It's not enough at night, though, so I'm going to start taking one Percocet before bed and use the Vicodin during the day.

    Would your surgeon give you stronger meds if you pressed for it? If they "prefer" that their patients not have the stronger ones, are they willing if it's needed? Maybe you could tell him what you wrote here, that you're usually a very upbeat person and tend to swallow your pain, but that what you're taking is just not enough. If he still won't give it to you, I guess the next step would be a pain management doctor. No one should have to suffer as you are when there are pain meds out there that are effective and very appropriate for your situation!

    Be the squeaky wheel, darlin'. You know yourself, and you know a lot about medical things in general. It doesn't have to be this way. You deserve better pain relief than this! Be an advocate for yourself and don't give up!

    I hope you get some relief soon!

    ~Emily

     
    Old 11-25-2006, 12:37 PM   #3
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    Re: Take a moment. Help. Pain never controlled.

    Babs, emily is right...be the squeeky wheel and be heard! As long as you allow them to ignore your cry for help, they will. You have been through an absolutely horrendous surgery and whether those doctors like giving proper medication or not, the fact is that anybody would need something much stronger than you are taking. They could at least give you lortab 10 ( a bit stronger than vic. 7.5) and let you take percocet 10 for bt. To expect ultram to help you is outrageously stupid. The pain itself will keep you from healing properly. It causes you to be tense which makes the pain worse, so it's time to start letting them know. Just tell them you need something stronger, preferably a slow release med with a bt; it isn't too much to ask for a heavy hitter.

    I had an ortho once in another life who promised to take over giving me my pain meds when my ortho spine specialist retired. He went back on his word and only wanted to give me ultram. I was, at that time, a lady who had had 2 lami's and a fusion as well as fused cervical and soft tissue damage. My husband had a l level fusion and he gave him darvocet. So sometimes I think
    there is a bias against women.

    I hope you find a pm soon who is mre than a needle jockey--they're the worst, in my opinion. Needle work brings them big bucks and when they don't want to give prescriptions, I question their motives.

    Good luck, babs...God bless.

    Carol
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    Old 11-25-2006, 03:58 PM   #4
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    Re: Take a moment. Help. Pain never controlled.

    Hi Babs,

    I couldnt agree more with the others. You have to advocate for yourself. The doctor doesn't know you are in pain unless you tell him. And if he says no percs... then tell him you need something equal to it that will help and if what he/she gives you doesnt do it.. he/she MUST TRY something else to make you more comfortable.

    There are gobs out there to try and why you weren't given more options to better pain control is not right.

    I had a great pain management doctor and we talked about pain meds. I told them percs, ultram, ultracet, .. they all make me very sick. I used to take tylenol 3 for general pain pills.. so they tried me on those.. I told them I too thought it was too strong cuz it put me in lala land mentally.

    So they said.. well have you ever tried Lortab or Vicodin. I said no.. so they perscribed it and it works the best for me. I have control of my head, but it helps cut the pain level down.

    Even the morophine in the hospital wasn't doing much for me. I was tolerating the hurting but I could have been more comfortable but didnt know it at the time. They took me off the morophine and gave me vicodin and the nurses came in and commented how well my body responded to it and I was finally resting comfortably. I noticed a change also, but not as much as they did.

    So, INSIST they help you to try something to ease your pain.

    As for women being put out for pain meds when the men seem to get the stronger stuff.. I think it's based on weight ratios one, and two.. in general WOMEN are more tolerant to pain than men. I've heard this from most doctors I have seen. So instead while it still is of no benefit.. I think this is a case of the glass being half full rather than empty.

    I too am a happy and easy going gal. But this has taught me alot in seeing that I am properly taken care of. I no longer sit idle.. I expect the doctors to do their part period. And if they suggest something.. I either concur because I understand, or I ask questions, or tell them.. no when needed and why. And I also make suggestions, which in my little world, so far, my doctors are all quite receptive to my suggestions and dont appear put out by it in anyway.

    So stand up and be heard. Tell them that smile is just your disposition and in no way does it account for your pain level. You keep underneath the shell but you are hurting like all get out and raise your voice an octave won't hurt. Not yelling, just prominent enough to let them know you aren't kidding.

    Hang in there and let us know how it goes. Take care. Tammy
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    Old 11-25-2006, 06:14 PM   #5
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    Re: Take a moment. Help. Pain never controlled.

    one time i asked my doctor if he thought my pain scale level was with or without pain meds and he said he figured it was how i felt before i took the meds. i told him WRONG! that is how i feel with meds ( between 8-10) and then things changed drastically. ask him what the purpose of pain medication and pain management is supposed to be - just to take the edge off or to make life livable and take away all or at least most of the pain?

     
    Old 11-25-2006, 06:40 PM   #6
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    Re: Take a moment. Help. Pain never controlled.

    Hello -
    You have already received excellent advice and support. I agree with all that has been said. A pain level of 7 is unacceptable. Your doctor wants you up and moving, right? Right. They all do becuase it is good for you. My surgeries have been much smaller than yours. I was expected to be walking 10 minutes several times a day for the first few weeks post-op. By week four I was supposed to be walking 1/2 mile a day. Well, if my pain level were a 6-8, I couldn't be walking that much, could I? No way. So, when my pain levels got very high (and they did at week 4 post-op), I called my doc and let him know that I wasn't able to do much walking at all cuz of the pain. My excellent doc was concerned and questioned me and I honestly told him I was suffering and I was having to lie down most of the day because the pain was too much for me. I was open to suggestions but I was also very clear: unless my pain was controlled better, I wasn't going to be able to meet his expectations. He told me what med regimen he would like to try and I agreed to try it. I also promised to call back in a few days to report whether it was working. It did. Oh, btw- I was sent home from my single level revision surgery with percocet and vicodan. I was switched to Oxycontin CR (10 mg) and vicodan for BT pain. At the 4 week mark, we upped the Oxy Cr to 3 (10 mg) a day and Vicodan every 4-6 hours. That worked for me. I stayed on that level until about 12 weeks post-op. From there I have been able to eliminate the Oxy entirely and I now just have the Vicodan and I only take it PRN. I usually only need one pill a day.
    I don't know what you are facing but I was facing a return to work at 12 weeks. I knew I couldn't have done that at a level 5+ pain. I don't aim to have to try to do it ever again (I worked for a full year in very great distress). These docs want us to function, work, and exercise. If I am in high pain I can't do these things and I think it is reasonable for our docs to deal with this honestly.
    It sounds to me like you are undermedicated. I do hope you can get this problem fixed. It is really a hinderance to your recovery to be in high pain. I wish you the best of luck - Suzy-Q

     
    Old 11-25-2006, 09:26 PM   #7
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    Re: Take a moment. Help. Pain never controlled.

    Hi,
    I'm not going to repeat all that everyone else has said except to say you owe yourself better than settling for what you get. I have the smiling face all the time even when complaining, I even had the bill collector call me today and thank me for being so nice, lolol, made his day anyway. Well I don't play smiley with my med needs, I always tell my doc what my level is at it's worst and with and without meds, I can't get to a pain level under a 5 or 6 with meds, so I know how you feel being in a higher level of pain all the time. I do work thru alot of my daily pain like you said. I have tried many meds to help, we are now going to a failed back clinic, perhaps you might try that angle? I will let you know how it turns out for me.

    I do a few other things to get thru the tough pain, like meditating, doing something I really like, I like to make greeting cards, that I can do while not moving around alot, it takes your mind off of the pain a bit. You might even try acupuncture, it has helped several people I know with back pain.

    I'm so sorry that your suffering so much, I will be praying for ya.

    God Bless

    Carol
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    Old 11-26-2006, 07:04 AM   #8
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    Re: Take a moment. Help. Pain never controlled.

    Thanks for all the replies. I have always read posts from every single one of you to others, and I knew that you'd be the exact ones to offer me some advice...really, everyone that replied back appear to me as such strong & smart individuals.

    I do have alternative methods that work fairly well. I feel like I need to reserve these methods for the "tougher" times...if that makes sense. I have no problem throwing a cold pack on my back...that helps...all the time. I reserve music therapy for the tough nights of nonsleep.
    I talk alot on the phone to friends....this sounds silly, but my friends can hold up conversation for a good 3 hours to get me over my really bad days.
    I am disappointned to say that I am allergic to something in accupuncture. I gave it the ol' college try (4times) and it did not work out.
    As soon as I am cleared I want to go back to my massage therapist...once a week...she keeps me going.

    It just bugged the heck out of me how the doctor replied to me about my pain. I felt not understood, and not important, and kicked to the wayside. I mean, come one, I just got the bill.....I did my part by making some dough for them, now help me get thru this (if I may speak for all of us) HORRIBLE time in my life. Sorry...still venting from that office visit.

    OK. Let me try being assertive and tuck my smile away.

    be well
    babs

     
    Old 11-26-2006, 12:25 PM   #9
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    Re: Take a moment. Help. Pain never controlled.

    Good for you babs...go get 'im. I can't wait to read your next post in which you are going to tell us that your medications have been increased. Stick to your guns!

    Carol
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    Old 11-26-2006, 08:37 PM   #10
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    Re: Take a moment. Help. Pain never controlled.

    Dearest Babs,

    Just read your posts and I certainly can relate, I won't make this long but it took me to stand my ground and tell my Doctor that my pain levels were unacceptable and needed some relief. We discussed the different pain medications and chose percocets in the evening and Darvocet during the day along with PT and the warm arthritis pool 2 times per week. I have had 2 back surgeries along with severe DDD and RA. As everyone has said it is our bodies and we all need to be the best advocates for ourselves as we can. I wish you the best and to have a wonderful holiday season.
    Hugs,
    Debbie

     
    Old 11-28-2006, 06:38 AM   #11
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    Re: Take a moment. Help. Pain never controlled.

    Thinking back a few years ago, My GP (who has now since retired, darn it!) also had bad back problems and had Lumbar fusion surgery. He was terrific about managing my pain as only someone who knows first hand what back pain is like. I never had any problems or concerns when it came to pain management. The point is, that unless your Doc knows how back pain really feels, there is no way they can relate, so we must do the best we can to inform them, sometimes we must demand it. I certainly understand how hard it is to tell a Doc that they are wrong about whatever pain meds they have decided will work for you. Only you can decide if they are working or not and you have to tell them they are not. There should be some sort of requirement that all Drs. that deal with back issues-have to experience some sort of pain induced procedure to the back and nerves so that they have an idea what it feels like, if only temporary. I bet you would see more concern from them about pain management My Doc is really pretty good about listening to my "complaints about pain" and does his best to accommodate me. But I have had some that our just the opposite and believe they know how much pain you can tolerate daily. Good luck to you and I hope that you get some relief soon.
    Porter

     
    Old 11-28-2006, 10:11 AM   #12
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    Re: Take a moment. Help. Pain never controlled.

    [QUOTE=Porter107]There should be some sort of requirement that all Drs. that deal with back issues-have to experience some sort of pain induced procedure to the back and nerves so that they have an idea what it feels like, if only temporary. I bet you would see more concern from them about pain management [/QUOTE]

    That's so true! Ever since the first time I was in the hospital, I've thought that every nurse should be required to be a bedridden patient for two days during their training. Not just bedridden, but not able to sit up and stretch to reach things. I got so tired of nurses moving my table out of their way and then forgetting to put it back! There goes my book, my water, my breathing exerciser... Then they finally show back up 3 hours later and ask if you've been using the breathing exerciser. Well, gee, if my arms were 8 feet long I could have, but you left it across the room! (No offense to that small percentage of nurses who actually think about this and remember to treat their patients like they'd want to be treated. I bet no nurses on this board would ever leave their patient's table out of reach. They know what it's like!)

    Sorry for the rant... Couldn't help myself!

    ~Emily

     
    Old 11-28-2006, 12:46 PM   #13
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    Re: Take a moment. Help. Pain never controlled.

    Even when I was in school, I always thought that everyone should watch the movie, "the doctor" with William Hurt. It implied the same thing as both Emily and Porter pointed out....you never know until you've been there yourself!!

    Emily, I had a very hurtful post and I am hesitant to stay on these Forums. Ever have any experience with that?
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    Old 11-28-2006, 01:32 PM   #14
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    Re: Take a moment. Help. Pain never controlled.

    Babs,
    I was reading your posts and I am so sorry you are dealing with all of this. I hope you a quick recovery! I just wanted to say that I had a couple hurtful posts and to just not pay so much attention to them. No one knows what you are going through but you. One day that person will come into a problem that someone else will not understand and they will feel the same as you do. Just look to the positive on these posts and know that 99% of us are here to listen and help if we can. Keep up your Spirits and I look forward to reading your future posts!!!


    Katrina

     
    Old 11-28-2006, 03:01 PM   #15
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    Re: Take a moment. Help. Pain never controlled.

    [QUOTE=babs17]
    Emily, I had a very hurtful post and I am hesitant to stay on these Forums. Ever have any experience with that?[/QUOTE]

    Oh, Babs, I hope I didn't offend you! I've always appreciated and respected your answers to [U]everyone[/U]! And from your comments about your work, you were clearly in that "small percentage" even before you had your surgery!

    I have not personally had any hurtful responses to any of my posts, but I've certainly read some posts that I thought were insensitive or, well, know-it-all-ish. We're all supposed to be just giving peer support, not professional advice. There seems to be an occasional person who feels that their opinion is the end all and be all and that we should all revere them even though we don't even know who they are. I've gotten so much encouragement and support here, though, that I'm not ready to leave over a few people who I feel are inappropriate at times. I really want to give back to others what I received during my hard times. I try to just stay away from posting on threads that I think are inappropriate, for the most part. There are a few very tactful and wise people here who are good at smoothing things over and helping to minimize hurt feelings on those posts. I'm grateful for them!

    I'd hate to see you leave the board. You've had some wonderful, thoughtful answers for quite a few people. And I hope you've been helped by some of the answers to your questions, too. For me, it's not only one way to pass time as I heal, but has also sort of given me some purpose during this time that I can't work. I'm still able to try to help some people who are hurting. I don't mean that to sound like I'm some wonderful kind of person or anything. I'm just continuing what others on here have done for me.

    I'm sorry you're feeling hurt by some of the posts. I don't know what posts made you feel this way, but maybe it wasn't personal. It may just be that someone was having a bad pain day and it came out on a post. I hope you can chalk it up to that or else to those posts coming from someone whose communication style is just so different from yours that you would be better off ignoring them. Nothing wrong with that. I hope you'll get some posts so far on the opposite extreme that you'll be smiling all day!

    You take care!

    (I guess I might get a few of those responses to THIS post!)

    ~Emily

     
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