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  • #3018
    Alicia Smith

    Since no topic has been made here, I’ll make one, and I’ll talk about my disability.

    I was born with a rare disease called the “Hunter MacDonald Syndrome”. It effects every joint in my body, causing them to become loose to the point of possible dislocation…where most times I end up having surgery because they don’t want to stay in place.
    This disease also causes hearing loss, serious heart conditions and benign brain tumors (I wasn’t born with the heart conditions so I got lucky).

    So far I’ve had 3 feet surgeries, left shoulder surgery, I had both of my hips reconstructed when I was 14, and I had 3 stomach hernia repair surgeries (I don’t think that’s related to my disease though), and I am about to get a major knee surgery soon (if I stop being busy), and my doctors want me to get neck surgery (the two top disks in my spine are dislocated in a way where they are crushing part of my spinal cord)

    Though it sounds like I’m going though a lot and yes it’s hard to even walk, it’s not holding me back from pursuing 3 careers.


    I have a form of Dysautonomia called P.O.T.S. (Postural Orthostatic Tachycardia Syndrome). It is a condition that affects both my heart and my autonomic nervous system. Essentially, neither of them work properly and cause me to experience rapid heart rate when going from a sitting/laying to a standing position. If I am upright, even if I am standing still, my heart begins to accelerate like it is in a marathon race. This causes me to faint, lose my vision (at times)…I also deal with chronic pain, in conjunction with some of the other conditions I have developed, due to POTS.

    I worked diligently in high school to achieve a academic scholarship to a private, liberal arts school that was out of state. I wanted (and still want) nothing more than to get away from my small town, and experience life to the fullest. Unfortunately, due to my struggles with my illness – I have returned home and am now looking at getting a 2 year degree as a Vet Tech. Despite my set backs, there has been some good that has come from my struggles. I manage my own small business, making customized pet collars/ beds. And have been able to collaborate with local rescues and shelters, and play a role in their work with animals.


    I thank you ladies for being courageous thru it all…and still going after your dreams, never giving up on yourself, regardless of your condition or disasbility…I myself understand you very well, because like they say, only those that have ‘walked in their shoes’ can understand us……even to the most caring and understandable person, its not the same. Pain has a way with being so ‘personable’….it completely owns you….sometimes it defeats us, and sometimes us makes us stronger…those who live with chronic-pain, 24/7 live on a day to day basis…some days are worst than others, some days we just feel like giving up, but our heart and soul has been strenghtened by our disability…pain has giving us a strength that only with pain can we achieve it…pain has tested our soul…our hearts…our patience and resilience…we have gone and continue to
    be tested everyday…pain will not let us give up on ourselves…and those who are not disabled, or live with chronic pain, will never fully understand us…only those who live thru life, like your own can…..yes, pain or disability makes us ‘loose’ some parts of ourselves, our ‘normal selves’ like sex..or wanting to have it…but, in a lot of cases, medication and physical limitations will ‘make you’ not want a sexual life…but, it shouldn’t make you not want ‘love’ in your life…..love is a emotion, a feeling of being happy and content with who you are, and what you want out of life…sex and love is not the same thing, and they go hand in hand like they have let us to believe…..one can be in pain and disabled, and can live happily without sex…and continue with your life and goals or dreams…and make them come true….but, without love specially without loving yourself, who you are, pain and disability included, then you will be unhappy….Sex and the lack of desire of it…will only make you not want sex….and that’s it…..nothing else will happen…and your life will go on, just as you want to live it…sex is just is sex…whatever importance you give it, it will become….to you…..so, I really understand what any of you are going thru….but the best thing that you had made as a choice, is to continue to be happy and thrive, in whatever condition you are in…pain and disability should not be a wall for you to stop living and going after whatever will make you happy and full of joy when you become who you want to be…, whether working, helping others, being a parent, traveling, being an artist, a volunteer….whatever you pursue, that is what will make you happy…love is just that…being happy…loving yourself, and who you are…

    I wish you all a very happy and fulfilled life..and don’t let nothing and nobody rob you of that happiness inside…


    Two years ago, at the age of 41, I was diagnosed with a prolapsed bladder and told I needed a hysterectomy and bladder sling. I now suffer from Vaginal Mesh Dyspareunia (pain during intercourse caused by mesh erosion through the vaginal wall). Like so many other women out there I have been lied to by my doctor who said it was a necessary, yet simple surgery that would fix everything and make me physically like a 16 year old again. He failed to explain to me the complications that could arise with the mesh, nor did he offer me the option to have this done using my own fascia. After I was given the green light to have sex I waited a few more weeks to make sure I was healed all the way. I wasn’t involved with anyone since well before my surgery, so I decided to buy a sex toy and “test the waters” on my own. It was painful, and I knew something wasn’t right. When I complained to the doctor I was told it was “all in my head”, and was offered antidepressants. I left completely infuriated. After a few months I was experiencing dull aching deep vaginal pain sometimes even when just laying down watching tv. I didn’t go back to the doctor until my 1 year post-op appointment. The exam was quite painful and the Dr finally admitted it was not “all in my head”, but the pain was from the mesh eroding. Now I’m facing a choice of having a mesh revision, which is not guaranteed to fix this problem, and could even make it worse.
    Recently, after 2 years of not dating, I met someone. I was afraid to date again, but missed the companionship of male company, and we “clicked” or so I thought. After a few dates I explained my situation to him, and he said it was not an issue, and “there is more than one way to please your partner”. I was so relieved by that statement, as I had much anxiety over bringing up the subject. A few weeks and several dates later he invited me over to watch a movie one evening. We were cuddling, kissing, etc., and things started heating up. He said he wanted to at least try to have intercourse and promised to stop if it hurt. I told him I’d be willing to do other stuff, but not penetration. At that point he got angry and said I should go because he had to get up early the next day. I felt so angry, hurt, and rejected. I just grabbed my keys and left as quickly as I could, so he wouldn’t see me crying. I could barely see the road through my tears as I drove home feeling like damaged goods.

    • This reply was modified 9 years, 6 months ago by Serendipity7.

    Iam so sorry your’re going thru this medical nightmare..and I hope you can start to fight back…I don’t know if you live in the Unites States, but if you ‘watch Tv” or google this “mesh erosion problems”..you should know that there
    is a ‘class action law-suit’ against these type of ‘medical nightmares’ that this product, mesh, has put women thru, and the uncaring doctors that ‘pushed’ them on women, who were desperate looking for a solution…So, if you can find it in yourself to put these ‘greedy-uncaring’ people to shame, sue them, get at least the “money’ from them, who caused it, in order to ‘find’ and try to repair your body and your mind to….People are getting millions and thousands of dollars because of the permanent damage they have caused unto them….you are a very classic case of going after these ‘criminals’……so, if I were you, make them pay for all your pain and suffering, now and in the future….sure money wont replace or not even make you feel normal again, but at least you will have the means to take care of yourself, and make these criminals pay they neglicence…

    look into that…..

    Now for these problems you will encounter with people who are at the end,
    selfish and un-caring, like this guy seems to be…there is no end to it..
    only your ‘common-sense’ and intuition can help you ‘weed’ out these type of men you will encounter in trying with you having sex, and promising you being caring and sympathethic towards your condition….well..as we all find out…only when we put the person to the test, they will pass or fail it….but I can assure you in the way the world is now, you will find more people who ‘fail’ than pass…so you need to get a strong head on your shoulders, first take care of you…find ways to cope and get strong on this condition that afflicts you…and what you can expect from the outside world…and start to see and expect people for what they really are, and not what you ‘wish’ them to be…..just be careful, really get to know the person before you ‘can trust them’….and if they ‘fail’ anyway, don’t make it about YOU…..because at the end…They are the ones that have the problem with your condition, they are selfish, and not a good person….so keep o going…don’t look back…..stop finding the answers or solutions of what is happening to you righ now in other people….be strong…take control of your life and your condition, go after those who ‘put’ you in this position, do something, don’t give up, keep on until you can find a solution…out there…because there is….but you have to do the hard work….don’t give up and do it on your own…don’t rely on others, first…..sure there are good people out there, but they have to follow you…you take the lead…and the good people will follow, and be there to see you thru…..don’t let things to happen…make them happen….stop being the victim…and get into ‘survival mode’ fight back…and do whatever it takes to make yourself better, accept help if they are willing to be there with you, without expecting nothing in return from you, other than ‘gratitude’ not sex….ok….stay strong…look into the lawsuit..get yourself empowered by knowledge, or knowing what to do, and do it…don’t be afraid….have faith in yourself, and in those willing to support you…

    My blessings go out to you…..I worked in the medical field for 25 yrs, so iam very familiar with situations like this, plus I am a retired patient advocate..which empowering the patient was my job…to help them cope and find solutions to their medical conditions and problems…

    I hope this helps you out…let me know, how you are doing ok….
    and youre welcome to contact me for any support you need.

    Blessing, take care of yourself..

    Ms SYlvie


    Thank you so much Ms SYlvie. I’m in NJ, I know about the lawsuits. I plan on speaking to a lawyer, but am planning on trying to see if the mesh revision surgery will help. I am very much a fighter. I’ve been through 4 cancer surgeries since I was in high school and have been in remission for 12 years. I’ve also been a single mom for 12 years and definitely don’t need a man to complete me, but it does get lonely at times as we all know. I guess I was feeling a little sorry for myself last night. At the age of 43 I’m not ready to let anyone take my fighting spirit away. Thank you for your support. 🙂


    GOOD FOR YOU!…after I read your reply, I know you will do what you need to do to get into better health, and I completely understand you, that sometimes
    we just need to ‘vent’ out, and that is very healthy to do…so, whenever you need to vent, or talk, or just to let me know how you are doing, iam here ok..
    like you, iam a fighter..since childhood too, plagued with strange diseases, and
    against all odds. 2 very traumatic, and near death accidents, that left me paralyzed and in a coma for 1 yr, but, thanks to the higher power, sheer will and
    medicine, here iam..still alive and kicking…trying to be there for those who need a ear, or a shoulder to cry on…I went thru the whole near-death experience
    twice now..and completely changed my life..and showed me my purpose in life…

    Even though I ended with a broken spine, broken from head to toe…my spirit was never broken…my heart goes out to you, in your survival of these awful illnesses, but life, gives us tests thru accidents and illnesses and losses…only those who have a fighting spirit survive and you are for sure one of them…never give up…and don’t let no one tell you you need someone special to have a life or find happiness….I truly believe that happiness and a special life, is what we ourselves make our lives so…..yeah,its nice and all to have a special person in your life to share it with, but, its not the end of your life, if you don’t….I truly believe that love comes from all kinds of ways around us…sure, romantic love is what we all want..but sometimes, its not in your destiny…and we are left to make the best out of it, and find other ways to feel loved….but,its most important we love ourselves, more than anything first…in order to receive love or give it…we must have it…..in us….

    don’t feel sorry for yourself….you only felt the need to reach out…and well, thanks to this great way, the internet, we can never be alone…there is always someone out there just feeling as you are…..

    good for you, you have the right spirit to make it in this world…and remember never are you alone…lonely, maybe…but never alone…You have YOU…and that is a great start!…plus you have your children…and that is the greatest love anyone can have…men, come and go children are forever!

    take care dear, and hope you keep me post it as how you are doing to resolve your pains and what steps you will be taking to take care of yourself…don’t forget about that lawsuit you deserve to get taken care of…you trusted them, and they didn’t do right…..but, first is your health, take care…stay true to yourself..




    How is everybody doing?….iam interested to know how you cope with
    life, and chonic pain…..?




    SEND THIS INFORMATON TO…[email protected]


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