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d it all year i was taking lamictal to supplement the cymbalta when i go through my yearly depression in august figuring this phase only happens then why should i take yet another drug that i might not need except for a brief period each year i ve been off for at least a month after tapering down today i took my first dose to see if it will help doc ok d this strategy depression has been with me since i was a teen my dad has it might even be bipolar is it genetic is it related to eds is it just me i ve had two major depressive episodes in my life with one ending up in the hospital checked myself in slipped through the cracks in the medical system long story i ve been on some sort of med since 1999 but it seems my body is able to defeat the effectiveness of it i know i need to seek counseling but it takes so much effort to find someone that fits right how many therapists have i seen in my life too many i know from experience though that the combo of meds and therapy are the most effective for me it can t be too inconvenient for me to go to the therapist or i ll stop going so i have to find someone nearby home or work hypnotherapy works well for me to shut off my self critical conscious mind sometimes i wish i could just hypnotize myself out of my problems ha ha maybe i should ask i m getting up to make the call to a therapist near my work now i can t let this get too much farther out of control depression sucks posted by elise at 3 39 pm 2 comments labels depression ehlers danlos syndrome baby on my mind you have to want it more than you fear it unknown i ve always wanted to have a child of my own i seemed to only find men who didn t want children though or if they did they were just not the right guy what was up with that then i met mr right a few dates in i learned that he had decided not to have any more children that his two beautiful teens from his previous marriage were sufficient however i was falling for him and had to decide whether to end the relationship and continue to search for the right man to have children with or give up that dream and take a risk that a life without my own child could be very fulfilling i had a heart to heart with my mom mother to three children and we discussed the pros and cons of my possible futures i decided to continue dating mr right and today we are happily married i love his children as my own six weeks after we married i was diagnosed with ehlers danlos syndrome hypermobility type a painful genetic condition my husband told me that he had been prepared to ask me about having children because he loved me so much but this new diagnosis and all the uncertainties that we faced nixed that idea genetically there is a 50 50 chance of having a child with eds and then the manifestations are different person to person i also struggle with clinical depression that also seems to have a genetic component though it s possibly related to the eds in addition to the risk to the child it s possible that the damage to my own body from the relaxin hormone released during pregnancy could leave me disabled this hormone is what enables the pelvis to relax spread enough for vaginal birth for some women with eds their pelvis is never the same so life has been fine without a child in the house we travel a lot i can sleep in regularly and we enjoy eachother s attention without much distraction yet i have this emptiness deep inside that i ve been struggling to keep quiet am i making a mistake by not asking my husband to have a child together my two best friends have very different baby stories one friend had an unexpected pregnancy that ended in an amazing smart little boy who was intensely loved by his single mother the boy s father was not in the picture until he was a toddler and even then my friend didn t want him around the father was dangerous and took unnecessary risks in life so it was inevitable that his son would get hurt my friend tried to limit contact and even took court action but they favored the father at 5 1 2 her son died in a tragic accident caused by his father she has never been the same though i knew her since she was pregnant with her son she and i only bonded after his death she s not able to have another child due to age but she s considered adoption however she is also taking into consideration that she s enjoying her life as is with no child or husband my other friend just had a beautiful baby boy a month ago she never wanted kids but she married someone who really did she said the other day that if she hadn t had a child it would have been a big mistake she s totally in love and will be an amazing mom it s neat to be around a newborn too could i handle a newborn so dh and i finally got around to the subject and he just doesn t see how it is possible especially since he d have to have surgery he s also of similar mind to me that this world is pretty f d up and then i saw the quote above on a friend s facebook page she actually wrote when it comes to making big decisions you ve got to want it more than fear it that struck a huge chord with me at this point in my life i have way too many fears about bringing a child into this crazy world i think i m done although i know i ll have more moments in life where i regret not having a child i now have this saying to look back onto i don t like to succumb to fear but this is one decision that will forever be ruled by it if i were younger and unaware i could have ignored my fears of the world we live in who s to say we wouldn t have the world s next nobel peace prize winner or president plus being a good mom is one of the best jobs ever eds is too big for me to handle plus what if we had a child with autism or some other disability yikes i don t know how those moms do it on top of handling their own disability at least eds is familiar i guess you do what you have to do for the loves in your life so i will be the best mom i can to my two beautiful grown up kids and will spoil my future nieces nephews like crazy my bff has also granted me honorary auntie status for her little guy i am so grateful for these younger people in my life god works in mysterious ways do any of you deal with these worries or issues i d love to hear your perspective posted by elise at 3 17 pm 5 comments labels dislocations ehlers danlos syndrome pregnancy and disability friday january 28 2011 2010 new year s resolution achieved i m not sure i ve ever taken new year s resolutions seriously since the joke is that they are always broken however i publicly stated two last year and actually achieved one of them to my surprise i planned to get my pain levels under control and succeeded it s been several months since my last serious post but i know i blogged about my stress over switching pain medications click here this change was one of the best decisions i ve made in a long time though i can say that my pain is generally now 2 4 on the pain scale on a daily basis of course i have my days my injuries and seasonal hormonal issues that impact my general well being but i feel more in control of my life and less anxious about long painful days hooray posted by elise at 5 10 pm 5 comments labels ehlers danlos syndrome pain pain management sunday january 9 2011 obligatory it s been a long time post i guess i got writer s block or blog fatigue or just lost interest since my last post really i think i got eds overload at the last conference in a good way but i also got socked with one month of insomnia just after the conference which didn t help my desire to write on my blog got me off track lots of changes happened at the ednf since july that i m still at a loss to understand and i ve felt a bit removed from it since it changed hands perhaps once they get the message boards going again i ll feel differently more connected you know how bears hibernate in the winter i think my hibernation period starts in august i always get a little low around that time of year for some reason not like people with sad because i perk back up in november it s weird we went to australia in sept oct and yet i still didn t feel inspired to write when we got back i had a major work deadline for end of oct then post grant recovery i found out two of my friends have breast cancer one a rare type and the other has metastatic bc a heartache then we hosted thanksgiving decembers flew by i did most of my gift shopping online this year wow great feeling to avoid the malls went to my parents house for xmas at in laws for ny holiday now it s 2011 time to start afresh posted by elise at 1 01 pm 1 comment labels ehlers danlos national foundation ehlers danlos syndrome fatigue new year writer s block thursday july 1 2010 gray matter atrophy i ve been bothered a lot by my cognitive changes over the last 10 years which seem to get worse daily i m almost 40 so i shouldn t be having much if any issues with memory etc however those of us with eds and people with fibromyalgia know that it is all too common to lose thoughts feel foggy forget everything and generally feel stupid it is very frustrating to me that i cannot remember things that were once very important to me for instance i hear something interesting on the news npr and then can t bring it into a conversation later that day the only condition in which my memory doesn t seem to fail me as much is when there is a visual cue attached to it which is very helpful especially when i need to find something i misplaced at this point how much of what i feel is from the pain from the meds or from eds anyway because of where i work and my general interest in reading scientific literature i ve heard a lot about gray matter atrophy and chronic pain lately basically the outer part gray matter of the brain shrinks and loses volume it ages prematurely in depression treatment with anti depressants can reverse some of the damage shrinkage in the hippocampus is there anything that can help with pain related damage to the gray matter one of the articles below seems to suggest that pain management might be helpful i wish i understood this topic better and hope there is someone out there who can alleviate my fears of losing my cognitive skills function at too early of an age maybe there will be someone at the ednf conference this month who can address this issue without hope there is nothing the function of gray matter is to route sensory or motor stimulus to interneurons of the cns in order to create a response to the stimulus through chemical synapse activity grey matter structures cortex deep nuclei process information originating in the sensory organs or in other gray matter regions this information is conveyed via specialized nerve cell extensions long axons which form the bulk of the cerebral cerebellar and spinal white matter wikipedia as gray matter decrease is at least partly reversible when pain is successfully treated we suggest that the gray matter abnormalities found in chronic pain do not reflect brain damage but rather are a reversible consequence of chronic nociceptive transmission which normalizes when the pain is adequately treated j neurosci 2009 nov 4 29 44 13746 50 local morphologic alterations of the brain in areas ascribable to the transmission of pain were recently detected in patients suffering from phantom pain chronic back pain irritable bowl syndrome fibromyalgia and frequent headaches these alterations were different for each pain syndrome but overlapped in the cingulate cortex the orbit frontal cortex the insula and dorsal pons as it seems that chronic pain patients have a common brain signature in areas known to be involved in pain regulation the question arises whether these changes are the cause or the consequence of chronic pain the in vivo demonstration of a loss of brain gray matter in patients suffering from chronic pain compared to age and sex matched healthy controls could represent the heavily discussed neuroanatomical substrate for pain memory schmerz 2009 dec 23 6 569 75 in german posted by elise at 2 09 pm 4 comments labels chronic pain cognitive problems ehlers danlos national foundation ehlers danlos syndrome fibromyalgia gray matter atrophy pain management sunday june 13 2010 crying out for purpose i sometimes feel like a jill of all trades with just a job not a life work that i love or a true calling i have several people close to me who have that sense of having purpose and have been able to pursue their passion i don t know what mine is and i m almost 40 there have been times in my life where i thought i knew what my purpose in life was supposed to be but i ve never followed through like next level of schooling for a variety of reasons i got my ba in cultural anthropology but never pursued anything in that field some things i ve tried acupressure herbalism nursing assistant with the intention of doing hospice care basic dance instructor past pursuits acupressure did very well at this for several years but struggled at the end with lack of continuing education and mental physical fatigue did i mention my high level of empathy as well as my eds i can go into this more at a later time loooong story herbalism i entered a group apprenticeship for a year and left after 4 months in complete frustration the teacher was not teaching anything that was promised and got sidetracked by another student to focus on flower essences which i just couldn t believe in i wanted the true traditional herbalism and this teacher was supposed to be reputable this coincided with one of the biggest mistakes in my life i turned down an interview with the national park service for a guide job at mesa verde in colorado because i had enrolled in this apprenticeship program made the feelings of frustration and being cheated even worse hospice home health aid nursing assistant my beloved grandmother died and was in hospice care at home i was so impressed by the hospice workers plus my interest in healing that i tried to find a meaningful direction in that regard i enrolled in the local nurses aid training program and did well throughout i got a job in the facility where the training was done nursing home in the dementia wing i planned to log some hours there and then go on to the home health aid program one of the things that drew me to working with the elderly is listening to them and treating them humanely i say this because too many nursing facilities are horrible i discovered two problems in my new job a i was rushed around so much that i couldn t possibly treat anyone like a human and most aids didn t and b i had a bad reaction to something that caused my hands to welt up and itch like crazy for a few days i took those days off and then quit acupuncture so with my ideas and skills in tow i thought i had made up my mind to pursue a career in acupuncture with a focus on pain management i was excited because one of the best schools in the country was in my state i was working on my prereqs for a master s program when life happened instead let s just say th...