tag:blogger.com,1999:blog-35466571824052009072024-02-20T11:28:24.472-08:00ebb TideThe ebbs and flows of my life with Ehlers-Danlos Syndromeelisehttp://www.blogger.com/profile/18267941174645425325noreply@blogger.comBlogger33125tag:blogger.com,1999:blog-3546657182405200907.post-17300361881738830182011-02-21T15:39:00.000-08:002011-02-21T15:39:40.059-08:00I hate depressionI'm depressed again. I don't know when it started but I'm fully entrenched in it now. I don't want to get out of bed, I'm irritable, I don't shower everyday, I go to work grudgingly, I don't enjoy my hubby like I should, I don't enjoy much of anything. I'm unhappy with my body (I've gained weight recently) and hate choosing what to wear in the morning, yet I don't want to workout. I'm tired of picking up the house. I've been struggling with the issue of childbearing (see previous post) and the sadness that comes with my decision not to have a child. I'm moody. There is nothing there when it comes to intimacy either. On the weekends, I sleep a lot and don't bother to get dressed. Lately I'm not even brushing my teeth. Ugh. It's affecting my relationship in so many ways that I'm concerned, yet I feel powerless to do anything. It takes so much energy and work...<br />
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Some days are better than others, but I inevitably want to do nothing by the end of the day but go to bed and forget everything. <br />
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I recently went off one of my meds thinking that I don't need 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). <br />
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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... <br />
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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.elisehttp://www.blogger.com/profile/18267941174645425325noreply@blogger.com2tag:blogger.com,1999:blog-3546657182405200907.post-48330337813642388312011-02-21T15:17:00.000-08:002011-02-21T15:18:49.737-08:00Baby on my mind"You have to want it more than you fear it." - unknown<br />
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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.<br />
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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.<br />
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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?<br />
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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.<br />
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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? <br />
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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.<br />
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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. <br />
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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. <br />
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God works in mysterious ways...<br />
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(Do any of you deal with these worries or issues? I'd love to hear your perspective.)elisehttp://www.blogger.com/profile/18267941174645425325noreply@blogger.com5tag:blogger.com,1999:blog-3546657182405200907.post-75047102408938487342011-01-28T17:10:00.000-08:002011-01-30T15:42:13.590-08:002010 New Year's Resolution achievedI'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!<br />
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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 <a href="http://ebbtideds.blogspot.com/2010/03/one-that-wont-go-away.html">here</a>). 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. <br />
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Hooray!!!elisehttp://www.blogger.com/profile/18267941174645425325noreply@blogger.com5tag:blogger.com,1999:blog-3546657182405200907.post-23390475508180272222011-01-09T13:01:00.000-08:002011-01-09T13:01:13.890-08:00Obligatory "it's been a long time" postI 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. <br />
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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. <br />
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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. <br />
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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. <br />
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Now it's 2011. Time to start afresh...elisehttp://www.blogger.com/profile/18267941174645425325noreply@blogger.com1tag:blogger.com,1999:blog-3546657182405200907.post-61059233036451126832010-07-01T14:09:00.000-07:002010-07-01T14:09:26.138-07:00Gray 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? <br />
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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. <br />
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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. <br />
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<span style="font-family: "Courier New",Courier,monospace; font-size: small;">"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." <i>Wikipedia</i></span><br />
<div style="font-family: "Courier New",Courier,monospace;"><br />
</div><div style="font-family: "Courier New",Courier,monospace;">"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." <i style="font-family: "Courier New",Courier,monospace;"><a href="javascript:AL_get(this,%20'jour',%20'J%20Neurosci.');" title="The
Journal of neuroscience : the official journal of the Society for
Neuroscience.">J Neurosci.</a> 2009 Nov 4;29(44):13746-50.</i><span style="font-family: "Courier New",Courier,monospace; font-size: small; font-weight: normal;"> </span></div><br />
<span style="font-size: small; font-weight: normal;"><span style="font-family: "Courier New",Courier,monospace;">"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.</span></span><span style="font-family: "Courier New",Courier,monospace; font-size: small; font-weight: normal;">" <i><a );="" ,%20="" href="javascript:AL_get(this,%20" jour="" schmerz.="">Schmerz.</a> 2009 Dec;23(6):569-75.[in German]</i></span>elisehttp://www.blogger.com/profile/18267941174645425325noreply@blogger.com4tag:blogger.com,1999:blog-3546657182405200907.post-29778451068808684792010-06-13T12:31:00.000-07:002010-06-13T13:16:24.474-07:00Crying out for PurposeI 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.<br />
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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...<br />
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<i>Past Pursuits </i><br />
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. <br />
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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. <br />
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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. <br />
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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 that it was the worst year in my life. I ended up moving 3000 miles away to start over again. I got married and settled here. Since I was now irreversibly thwarted from that path, I've felt lost.<br />
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Motherhood: I also felt strongly that I was meant to be a mother. I always thought that meant that I would have a baby; however, God gave me two beautiful, older step-children. Weird how that works. Sometimes the sadness of letting go that dream of having my own baby is overwhelming, but it gets easier with time. Realistically, I could not raise a baby now that my EDS is a challenge. There is a young woman I know who just got pregnant and is so thrilled! She just glows. It makes me wish for the ignorance of my 20s, but that would have changed the course of my life and who knows what shape I'd be in now (plus I would not have met my husband - not acceptable!). Again, I have felt a bit lost since that dream is never going to manifest.<br />
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<i>Possibilities </i><br />
Teaching intrigues me and is what my grandfather has wanted me to do since I was young. I am scared that I will not be able to complete the training in a full classroom because I simply don't have the physical energy and cognitive strength I used to have in my 20s. I like the challenge of learning and I've been told I have a gift for teaching. Some alternatives to full classrooms are tutoring and ESL classes. If I got my Master's, I could teach at the Community College level as well. First, I have to take the GRE's and I am terrified! I cruised through the english part of it in the study guides I bought. Then I got to the math section and couldn't get through the first page!!! I think I have to take a math class before I can take the GREs. :( Did I ever mention how much I hate math and that it's always been hard for me? When we get in a better financial place, I'll sign up for a dreaded class. I don't think the GRE study classes, like Kaplan, offer math classes/tutoring so I'm looking into the community colleges around here. Yikes!<br />
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And then there is the healing ministry I feel called to. I want to sit with people who are dying and are alone. I want to listen to those who are challenged by life. I want to help others while helping myself. I also enjoy being an advocate for EDS. Our local area doesn't have a support group and I think it's possible to organize one.<br />
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<i>Fears </i><br />
My great concern is that I will let my energy get sucked away by those in need and I will overextend myself. I have a full-time job with a commute that take most of my energy. I sleep most of the weekend to get enough energy for the next week. Where is the balance?<br />
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Have I missed the boat?<br />
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What is your purpose in life? If you weren't born knowing it, how did you figure it out?elisehttp://www.blogger.com/profile/18267941174645425325noreply@blogger.com1tag:blogger.com,1999:blog-3546657182405200907.post-39198442732476026732010-03-28T16:02:00.000-07:002011-01-09T13:14:13.112-08:00"One that won't go away"I meant to write an update to my Resolution and Lent post but wasn't in the mood until now. <br />
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1) Pain management: I've been taking a short-acting pain med for 4 years now. It lasts ~3 hours and then the pain and mental dysfunction/cloud comes back. So, I had a light-bulb moment - my pain med is not making it through the night so I wake up in pain (duh!). I guess taking control of my pain since January has led to brilliant deductions I never thought of before. Feeling stupid? Yes.<br />
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2) Morning wake-up time: Well, this change is not going as planned (sorry Jesus). Some of you, including hubby, would say 'of course not', but I was determined. So, I did well for 2 days of the first week then I got sick for three days. Early waking worked for another 2 days and then I overslept two days. I tried for another week or thereabouts and then gave up. Not a good thing to choose for Lent, I guess, but I thought such a motivator would kick my butt into gear. Turns out my butt needs the gear it is already in. <br />
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Sigh<br />
Early into the second week after getting sick, I had an acute care appt with my MD due to that bug. While she was seeing me for that issue, we talked about my pain problems during the night. I've tried everything short of waking up every 3 hours to take pills, which would be ridiculous considering the level of fatigue I have. So she said we need to try a longer acting medication. I was not happy about the options, which are both in the controlled-substances category. Better way of saying it is that I was scared of the options. <br />
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Scared<br />
I'm not afraid of the med, I'm afraid of the name. Morphine. It seems unreal to need something that we are taught as very potent and used in major cases of pain. Granted, I am on the lowest dose, so there is a reality to the situation that I am not severely ill. But still... I am more likely to call my new medication by its brand name than the generic we are so familiar with. It doesn't seem to be a stigma issue I am dealing with either. I know... I think it also has to do with the looks people give me when I explain to them I have a chronic painful disorder (if I am wearing braces or am limping, etc). I don't like the sympathy and immediate concern they feel they have to express, though I am guilty of doing the same to others who might struggle with other stuff. I am not ungrateful, I don't like the attention. Add to that the sound of morphine and the concern doubles. It is hard to explain, I am finding. So, I suppose there is an internal and external level of anxiety about the new drug. I don't want the attention that comes with other people's perceptions of what I must be going through if I am on morphine, and it is hard for me to acknowledge that I cannot control my body/pain. It comes down to quality of life, ultimately. <br />
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When I was initially diagnosed in 2006, my doctor at the time discussed the different types of pain medications with me. I was anxious about opiate meds so I accepted tramadol, a short-acting med that helped tremendously in combination with OTC naprosen. The doc called tramadol a "baby"-narcotic with a similar action to the big guys. The naprosen helps with inflammation that the other meds don't cover. <br />
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For pain, there is no huge difference with how I feel on this med vs the tramadol; I just don't have to take pills every 3 hour, which is very nice. At the follow up that I had, we discussed my pain status after 4 weeks on the ms contin. The new med lasts the 12 hours and helps bring the baseline pain down from a 5/6 to a 2/3. Add tramadol (and aleve if needed) to that and I have a 0.<br />
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The only problem that doesn't go away with the ms contin is the brain fog, which typically manifest as confusion, spaciness, forgetfulness, and word loss. Tramadol makes me feel like my old self before the constant pain. I can't explain how horrible it is to feel like you used to be moderately intelligent and a good, reliable employee, and now you are incompetent, unreliable and mentally clumsy. So, my doc asked me several questions and suggested that I take the tramadol when I feel this fog come on; that it is that 2-3 level of pain that is still distracting my body/mind from working optimally. It really does help to combine the drugs as she suggested. The only concern she has is the level of seratonin inhibitors in my system between the cymbalta and the tramadol - that I should back off tramadol as much as possible, which is the benefit of adding the ms contin. I went from 6-8 tramadol a day down to ~3, as needed. <br />
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So, I am doing well on my New Year's resolution to manage my pain properly, even though I might be having adjustment issues. Next year, I'll try cutting back on chocolate or some other temptation for Lent. Though difficult, I will have a much easier time managing my chocolate intake than my sleeping schedule (insert big smiley face here). You lose some, you win some. elisehttp://www.blogger.com/profile/18267941174645425325noreply@blogger.com1tag:blogger.com,1999:blog-3546657182405200907.post-89446165521372335382010-03-01T13:35:00.000-08:002011-01-09T13:18:51.606-08:00Resolution and LentThis is the year of Control. It is so easy for life to get out of control and for chaos to take over. I've found a few places in my life that I can have power over with the hope of increasing my quality of life. So, I made a New Year's resolution as well as a commitment for the 40 days of Lent that I think I can actually achieve!<br />
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1) New Year (and hopefully every year thereafter): Don't chase the pain. Manage my pain level so it doesn't interfere with my marriage, my friendships, my hobbies, and general quality of life.<br />
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Lent: Get up at 5:30am EVERY day. <br />
Self denial - pushing myself out of bed instead of hitting snooze for another 90 minutes. Getting up early when I am NOT a morning person. Fasting from self-indulgence regarding morning snoozing. <br />
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If I make myself get out of bed as soon as the alarm rings, and I do so between 5-6am, I can stay awake (mostly - still require 2-3 cups of black tea and some rest time, but noooo sleeping). I can be a responsible adult and get to work on time and perhaps get some more hours in the day, including nice ones with my husband who IS a morning person. 40 days of 5:30am might actually reset my internal clock for the better - including more restful sleep (more hours does not always equal more restful sleep for me). On the weekends, I can take naps; my hubby does anyway. Might as well join him and the cats.<br />
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Issues 1 and 2 are closely tied together. If I wait to wake up until a more reasonable hour during the work week, it is much harder to get up due to pain (snooze button to the rescue) and/or not hearing the alarm AT ALL(!). I am not sure what it is about those extra couple of hours that makes a difference? Mind you, the pain is there even when I wake up at 5:30, but it is easier to have more power over it at that time. No clue why. But I do have to take my pain meds when I get up regardless of the time. Hmm, I hope that makes sense. When I let myself sleep on a day off, I will naturally wake up at ~8:30am, though it is soooo easy for me to sleep until noon or later! Ha ha!elisehttp://www.blogger.com/profile/18267941174645425325noreply@blogger.com2tag:blogger.com,1999:blog-3546657182405200907.post-63433523027085157022010-02-01T18:08:00.000-08:002010-02-01T18:08:58.885-08:00Started and stopped...That's how the last few months have been when it comes to writing blog posts. SOOOO much has happened since my last post that it feels overwhelming to edit what is worthwhile posting. <br />
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Just to get rolling again, I thought perhaps I could point out the "collection" of blogs I follow (over to the right -->). I intentionally look for blogs related to Ehlers-Danlos Syndrome and Hypermobility Syndrome. I also like to add other blogs I think people would find interesting or useful. There is no way I can possibly read all the entries people write, though I tried at first when I'd just gotten started, but maybe you'd like to add to your reading list. <br />
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When I started blogging, one of the things I found so helpful in other peoples' blogs was the lists of blogs they read. I've met some EDS friends through their blogs; I've heard perspectives on the syndrome that I might not have considered; and I hope that maybe someone can use my list to make their own connections. It seems that there are never too many opportunities to meet others with Ehlers-Danlos, or commiserate with chronic pain sufferers, or learn about techniques to keep your marriage and friendships alive when you feel like crap. <br />
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So, I invite you to look around and see who you find, what you learn, and if it makes the time between doses of pain meds go a little faster.<br />
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Finally, if you have any blogs you'd like to suggest, drop me a line.elisehttp://www.blogger.com/profile/18267941174645425325noreply@blogger.com2tag:blogger.com,1999:blog-3546657182405200907.post-76702162178931392922009-11-19T18:07:00.000-08:002009-11-19T18:07:08.983-08:00Crow TimeI love sunset. I used to love it when I could witness spectacular sunsets in Western Mass. We don't get those so much here in the Sacto basin. However, we do have crow time at twilight.<br />
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It is quite magical to see hundreds of crows flying to their night roosts in Sacramento and Davis. A steady stream of these intelligent birds comes in like clockwork from the daily forage in the fields - bunches of birds from this field and that one converging and calling and greeting each other. Then the story telling begins. The members of the congregation call out their adventures of the day from amongst the trees they call home.<br />
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Beware of your car if you should be so unlucky to choose a spot under one of these trees! You will be laughed at by your fellow townspeople when they see the evidence of your mistake. We've all done it. Cars bespeckled with white splotches of crow poo. <br />
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When we have the inevitable winter foggy days (tulle fog - low and extremely dense), I look out my office window to wistfully witness the occasional crow emerging from the depths and disappearing again like a smudge of a ghost. <br />
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I love crow time and I will surely have to post about bat time in the future. Some call dusk the magic hour.elisehttp://www.blogger.com/profile/18267941174645425325noreply@blogger.com1tag:blogger.com,1999:blog-3546657182405200907.post-80142926563339597442009-11-17T18:01:00.000-08:002009-11-17T18:01:56.541-08:00The EDNF needs help - pleaseThe Ehlers-Danlos National Foundation, a group I highly depend on and gladly volunteer time for, is another non-profit struggling in this fiscal climate. I, and others like me who deal with this underdiagnosed and mismanaged condition, can't afford for the foundation to fail due to lack of funding. <br />
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What the EDNF does for me:<br />
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<ul><li>creates a safe place to ask questions about EDS - to understand what is going on in my body<br />
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<li>provides a wealth of resources - Medical Resource Guides, Loose Connections, medical articles, etc<br />
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<li>helps me educate my doctors and medical professionals about this strange disorder</li>
<li>allows me to advocate for others who need help finding information and connecting with medical professionals in my area </li>
<li>creates fun and invaluable learning conferences where I can meet others with EDS and listen to professionals present the latest findings or discuss ways to treat our common problems</li>
<li>gives me opportunities to use my skills and interests to help others</li>
<li>creates space to form long-lasting friendships <br />
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<li>and so many other things I can't think of right now!</li>
</ul>As Eliot Chack, on the EDNF Board of Directors, writes so well:<br />
<span style="font-family: Arial,Helvetica,sans-serif; font-size: 12pt;"><span style="font-size: small;">"Please help sustain our community so it can continue to educate caregivers, patients and their families and carry on the call for further research funding. If you can only give $10, $15, $25 or if you are fortunate enough to be able to give more please do, any amount will help a great organization helping families like ours. Please click below to donate, and thank you for your support." </span></span><br />
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<span style="font-family: Arial,Helvetica,sans-serif; font-size: 12pt;"><span style="font-size: small;">I've donated. Can you? Please? <br />
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<span style="font-family: Arial,Helvetica,sans-serif; font-size: 12pt;"> </span> <a href="https://npo.networkforgood.org/Donate/Donate.aspx?npoSubscriptionId=1000382" linkindex="34" target="_blank" title="EDNF Donation Page"><img alt="" border="0" src="http://www.ednf.org/images/stories/Awareness_Efforts/2009Awareness/HingeSpecial/donatehere.gif" /></a>elisehttp://www.blogger.com/profile/18267941174645425325noreply@blogger.com0tag:blogger.com,1999:blog-3546657182405200907.post-16865691757769448602009-11-17T17:42:00.000-08:002009-11-17T17:42:13.554-08:00"Spotlight: In a world of hurt" - UCDavis Pain ManagementHi all,<br />
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I feel that this spotlight on pain and pain management from the UC Davis Medical Center really deserves some attention. Though the video does not discuss EDS, the topic is critical in these days of medication addition vs dependence. Also, Dr. Fishman is an amazing physician and has been trained to understand EDS by one of our most knowledgeable EDSers, Maggie Buckley - Advocate Extraordinaire. <br />
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<div class="spotlight_deck"><b>"UC Davis gains ground in war on chronic pain</b><br />
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Addiction to prescription painkillers now outpaces illicit drug use as a public health problem in the United States, affecting people from all walks of life — not just celebrities like Michael Jackson, Anna Nicole Smith and Elvis Presley.<br />
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UC Davis is at the forefront of addressing this growing problem. In an eight-minute documentary produced for UCTV, top experts explore why prescription drug addiction is on the rise and how the problem can be stemmed. <br />
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You’ll hear from:<br />
<ul><li>Scott Fishman, one of the nation’s foremost pain medicine experts, about which painkillers are most often abused, who is most likely to abuse them and how prescription drug addicts obtain their drugs.</li>
<li>Richard Kravitz, who studies the health care system, and Michael Wilkes, known for his innovations in medical education, about the role that physicians play, and</li>
<li>Professor Prasad Naik, an expert in marketing, about how pharmaceutical advertising contributes to the problem.</li>
</ul>You’ll also see inside the UC Davis Health System’s renowned Pain Medicine Clinic, and watch as pain medicine specialists use the latest tools to attack the problem of pain for thousands of Northern California residents."<br />
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<a href="http://www.ucdavis.edu/spotlight/1109/in_a_world_of_hurt/?homeflash=true" linkindex="67">Video and story link</a><br />
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Videography by Ken Zukin; produced by Paul Pfotenhauerelisehttp://www.blogger.com/profile/18267941174645425325noreply@blogger.com0tag:blogger.com,1999:blog-3546657182405200907.post-39805663293215331762009-11-04T01:36:00.000-08:002009-11-04T01:38:15.181-08:00Stu Garlicson<div style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">Not a real person or even thing - just words stuck in my head. :) </span><br />
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</div><div style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">It's 12:40 am and I can't sleep tonight. Don't know if it is because it's been a long day of a long week, stress, or the full-ish moon. Sleep is just beyond my reach despite plenty of snooze-inducing pills in my system and earplugs. So I write...</span><br />
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</div><div style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">I tend to be my most prolific just before bed. Anyone else have that phenom? It's often nothing I can capture in writing, but the poetry is still there. </span><br />
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</div><div style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">So many things going on and several I can't yet say have been solidified. Living in a state of minor chaos and uncertainty but all stems from a place of love and striving for peace. I will let you know when I know. </span><br />
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</div><div style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">My sweet brother made a comment about my list of blogs I follow - along the lines of it being a reflection of where I am in the world these days. Wondering at the level of pain I express, etc. True, I do follow EDS and health-related blogs, but I have two primary reasons for doing so. 1) There are so many people who don't know about EDS and how much support and good information is out there. I see my list as a resource for those new to the idea of EDS, who are searching for anything that will help them understand what is going on in their lives. I list what I was looking for when I first got diagnosed. 2) I feel like I am an advocate for this bizarre syndrome that affects so many people in so many different ways. If you have it, you have to know about it to get the care you need. Maybe my collection will help someone somehow. A side benefit is that so many of these people are really interesting. :) </span><br />
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</div><div style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">I just noticed that I've been wearing a larger than usual caretaking hat lately. My husband is #1 for a variety of reasons I can't explain right now. My boss, as issues relate back to my husband that might have an impact on my work. A menagerie of cats... </span><br />
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</div><div style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">I have my lovey cat, Aubrie, two young sisters, Luna and Ruby, and a Siamese that doesn't live in the house but camps out at my back door. As for the cats, my husband can't stand the sight of Ruby because she doesn't have a tail. She is the one I'd choose between Luna and Ruby because she has a more submissive personality that suits Aubrie, she is interested in reaching out to Aubrie for play, and I adore her. Luna is beautiful, cuddly, trouble (she can open doors with latches), and doesn't understand that kitties don't go on kitchen counters. She is dominant and is more difficult around Aubrie, which stresses my baby out. I hope I can find a good home for Ruby in this sad state of animal abandonment and full foster homes. I'm trying to train the sisters so they will grow into good kitties. Both girls seem to have two layers of fur and Ruby has traits of manx in her. Makes me curious where some of their heritage came from. <br />
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</div><div style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">The Siamese is back. She has a habit of coming by around 9am and after dark in the evening. In the mornings, she comes for food. Although someone put a flea collar on her and seems to have tried to take her in, looks like her bad temperament got her kicked out of that new home. She has a mean, defensive side, though she is pretty desperate for affection. She's clearly been neglected for a while - poor fur, long nails that look like they are becoming a problem, and so skinny you can see her ribs/spine. She is hand shy and the claws and teeth come out when she thinks you are too close or you try to give her food when she is super hungry. Don't know why I seem to be attracting all these cats lately. Hubby is NOT happy.<br />
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</div><div style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">I'm avoiding talking about my husband and boss for now, but let's just say that I had to cancel the movers last week. </span><br />
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</div><div style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">Facebook is evil but I recently signed up for an account. I linked my blog to my space there so perhaps EDS and my followed blogs will get more attention. I've managed to find two lost cousins and some old friends. Lots of memories there. It's weird how FB works in that there are so many connections I didn't realize I could find. </span><br />
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</div><div style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">I would love to work a few hours less per week. There are many things I'd like to do with my time. Facebook kind of ties into my interest in geneology. I'd like to do more research into EDS and be able to share my thoughts on some scientific articles with you. Nevermind being able to have early dinners with hubs and catch up on emails/ phone calls, and other friend/family related stuff. Plus I just need some more time to sleep/rest. (funny considering my current state of sleeplessness)</span><br />
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</div><div style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">Things are generally under control health wise. My slipped rib is getting better and only bugs me every few minutes rather than all the time. It's on its way to bye bye land. </span><br />
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</div><div style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">I had a great evening with my younger kiddo. She came home from college for a day so we could go car shopping (her car is dying). Pops wasn't feeling well and went to bed early. Since K was staying over, she and I spent time eating ice cream, talking about life, and crocheting. Well, let's say that she was crocheting and I was making a mess. The cool thing is that she taught me how to do a basic crochet stitch, which I was doing completely wrong. It's fun when your kidlet wants to teach you stuff. </span><br />
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</div><div style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">I'm reading an interesting book that's been out a while, "Eats, Shoot and Leaves", and it usually calms me for bed. Not tonight. It's a really cool book on punctuation, funny to boot. I'm fascinated by editing right now. I've discovered it is something I am good at and enjoy doing. There are things I need to brush up on like proper use of colons. I primarily edit scientific stuff for work, which has its own style, making it a bit challenging to know what is proper for general writing. I, of course, don't pay much attention to punctuation when I am blogging or emailing. This phenomenon is changing puncuation and grammar usage, interestingly enough. I like the book also because the author talks about some of the history of various marks. Neato. </span><br />
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</div><div style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">Does anyone know where the phrase 'cool beans' came from? My dad says it and I find it coming out of my mouth on occasion when I get tired of the other words/phrases in common usage right now. Ha ha! I had to look it up. No wonder my dad uses this phrase often:</span><br />
</div><span style="font-size: small;"> <a href="http://www.urbandictionary.com/define.php?term=cool%20beans">http://www.urbandictionary.com/define.php?term=cool%20beans</a></span><br />
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<div style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">Looks like my battery is going to conk out before I do. Sigh. </span><br />
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</div><div style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">Thinking of: P, Barb, K, Angel, Kayla (bubble girl), grampa, my sis, JB in India, my boss (though I'd rather forget we have a grant due in the morning - oh, that's a few hours from now!), Dr. Yo, God, Aubrie, lilac lady, G, Dad, homes for kitties, sleeeeeeeep...</span><br />
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</div><div style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: x-small;"><span style="font-size: small;">ttfn</span><br />
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</div>elisehttp://www.blogger.com/profile/18267941174645425325noreply@blogger.com3tag:blogger.com,1999:blog-3546657182405200907.post-67606806807483822072009-10-20T22:20:00.000-07:002009-10-20T22:22:01.095-07:00since the down spellI got through the down time I was having a few weeks ago. Seeing my husband that weekend and getting my meds sorted out helped a lot. Still having some ups and downs - cried over a dropped baked potato last night (was my dinner and didn't have another one to bake). Been under a lot of stress as I've mentioned before. <br />
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An update on the Siamese kitty I was concerned about - she showed up the other night, as she likes to do when my kitty is by the back door, and had a flea collar on. I feel so much better that someone is looking after her.<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="http://4.bp.blogspot.com/_HhUUU9NyjBs/St6UAII7F-I/AAAAAAAAACI/d_UTLj1v0LA/s1600-h/100_1271.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="http://4.bp.blogspot.com/_HhUUU9NyjBs/St6UAII7F-I/AAAAAAAAACI/d_UTLj1v0LA/s200/100_1271.JPG" /></a><br />
</div><a href="http://1.bp.blogspot.com/_HhUUU9NyjBs/St6Ue5xtA3I/AAAAAAAAACg/1IchreQMa_M/s1600-h/100_1295.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="http://1.bp.blogspot.com/_HhUUU9NyjBs/St6Ue5xtA3I/AAAAAAAAACg/1IchreQMa_M/s200/100_1295.JPG" /></a>I've become foster mom to two 6mo old kittens from our neighborhood. They've been hanging out in my neighbor's yard and came to my yard to eat food I'd left out for the Siamese. They are both unneutered girls from the same litter. The only ways you can tell that, though, the similarity in their faces and that they are both gray. Luna is the 8 pound dominant female (below). Ruby is a petite 5 pounds and has no tail (manx-ish; top). My husband wants to keep Luna so I need to find a home for Ruby. All of the shelters in our area are not accepting any more cats. They are completely full and have even more cats in foster care. So sad! <br />
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It's going to be hard for me to split the girls up but we already have a lovely older kitty (8yo) Aubrie and she is completely overwhelmed by the terrible twosome. Sigh.<br />
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I've taken the girls to the vet for check ups and they are both healthy, thankfully. I think Luna will be going into heat soon so I need to get her fixed. Ruby seems to be underdeveloped socially so I'm working with her to hopefully bring her up to speed. They are both litter trained, which is nice. Oddly, or coincidentally, or unfortunately(?), there is a very friendly male cat in the neighborhood who lives across the street from the street's mailbox and has a striking resemblance to my kitties. He likes to follow me home and get lots of scratches (he drools though - blech). His meow is also high-pitched and soft like Ruby's. My guess is he got someone else's cat pregnant. The girls are not feral but they are WILD around the house like the crazy kittens they are. They are a lot to handle and it seems someone was not interested in doing so. Now that they've been treated for fleas and have regular food, water, and shelter, they seem quite happy. <br />
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I am most concerned for Aubrie, who is regularly terrorized by one or the other of the kittens. Ruby likes to block Aubrie's way through any door or hallway, and Luna loves to bat at Aubrie's tail when she is eating (I figure Luna is used to Ruby's lack of tail!). I've kept Aubrie in my room at night so we have some peace. I am also experimenting with keeping the kittens in a room together so Aubrie can freely roam the house again (good plan so far). I'm just waiting for Luna to open the door though - the doors are handles not knobs, and Luna jumps up and pulls down on the handle to open the door. We'll see when I get back home! Yikes! <br />
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It's been an interesting journey with cats lately. I've wanted to be a foster mom, just didn't expect it to be for kitties! Well, they do keep me distracted from the loneliness at home without my husband. A project of sorts.<br />
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Not much to report re: EDS. My fingers hurt from the change in weather and my neck hurts when I wake up. I got a new nightguard for my teeth/jaw. I'm still adjusting but I think it will help save my jaw from further deterioration (not good on one side). I guess the thing that bothers me most is my mood and a lot of that has to do with my current circumstances.<br />
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I am really looking forward to meeting Niki and Nicole in Seattle. I think there is a lot of potential for friendships that might make the transition away from CA a bit easier. Just a few more weeks (~6?)!<br />
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Thanks for all your warm thoughts and I want you to know they've helped. Hugs to my 'interesting people'!elisehttp://www.blogger.com/profile/18267941174645425325noreply@blogger.com5tag:blogger.com,1999:blog-3546657182405200907.post-56351755978972393742009-10-14T23:45:00.000-07:002009-10-14T23:45:13.519-07:00UpdateSo, I managed to get my PCP to send in an order for 4 days of meds since my psych was out of the office. Did you know that Cymbalta is $7/day?!!! I don't know how people without insurance manage. The order from NextRx was in my mailbox when I got home that Friday night so I was covered no matter what, thank goodness!<br />
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I had also picked up my husband that evening for a surprise visit that weekend. I have to say that being with my husband really helped my depression and anxiety. It had been 2 weeks without seeing him.<br />
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It was my step-daughter's birthday the following week so we spent Sunday with her up at college. We had a nice lunch and took a lovely walk. She is such a love.<br />
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My pain meds make such a difference in my state of mind and cognitive clarity. <br />
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So, the stress of work and living apart, not taking my pain meds regularly, and other pressures seem to be contributing to my anxiety. I'm trying to take a bit more control over several issues and it seems to be working.<br />
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Just wanted to give you an update. Thanks for the warm thoughts. I hope to get back to some of you regarding your comments - it's taken me a while to get on track from my funk.elisehttp://www.blogger.com/profile/18267941174645425325noreply@blogger.com2tag:blogger.com,1999:blog-3546657182405200907.post-74755494243467587022009-10-02T12:28:00.000-07:002009-10-02T12:28:14.796-07:00Anxious and depressedI've always struggled with severe anxiety and depression but have managed with meds and other coping mechanisms. I've been going through a tough time for the last few of weeks with a resurgence of "could care less" and wanting to hide under the covers and sleep all day.<br />
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Every year for the last 5+, I get a medication-resistant depression/anxiety spell that lasts from August - November. It is not SAD, as I don't have this messiness in the middle of winter. I started meds last year to work on treating this specific type of depression and it has helped dramatically until now (the end of September).<br />
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There are several factors that have changed in my life recently (last few months) that could easily contribute to my feelings.<br />
1) my husband is living in another state for a job<br />
2) I'm on a new med (switched from effexor to cymbalta)<br />
3) I can't stand meat - I'm completely grossed out by it<br />
4) I'm more sensitive (empathic) since switching meds (this issue went away with effexor)<br />
5) two of my husband's immediate family members died during the summer and now my grandfather is dying<br />
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I am irritable, exhausted, unfocused, am not eating right (though I take my vitamins), don't sleep well (worse than usual), want to cry, don't want to do anything I don't have to (including waiting as long as possible to do laundry, food shopping, cleaning the house, and other essentials), and don't want to reach out to anyone. I've also been having horrible dreams this week. <br />
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The authors of a recently published letter (PDF is on the EDNF.org web site) in response to an article on depression symptoms, states that virtually every symptom described in the article is also present in EDS. Yes, there is a higher prevalence of depression and anxiety in people with chronic pain, as well as those with family members diagnosed with depression. I'm 90% sure I've inherited my EDS from both sides of my family, and those with the stronger EDS symptoms are the ones with worse depression (or vice versa - chicken and egg hypothesis).While the published letter gave me so much hope because the psychiatry field is hopefully going to recognize EDS some day, it doesn't help me in this moment.<br />
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I am super anxious about my medication. I sent my prescription to a mail-in service (NextRx) and have been given notice that the meds are in the mail. However, I am now officially out of meds as of today and it's Friday. I am freaking out about the possibility of going through the whole weekend without meds, if they are not in today's mail! I just called my Psych MD and found out she is not in the office on Fridays and will not be able to call in a script for only 4 days of meds until Monday. Those who take any long-term drugs like this know we can't just stop taking them. A co-worker suggested I call back and ask for the physician on call who might be able to help. The receptionist I originally got was basically treating me like "so what?" I don't think she's ever been on medication or else she would not have responded to me with such attitude.<br />
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I got an idea just now. I think I'll call my regular MD to see if she can call in meds for me! Ah, that would ease my mind. She knows I am not crazy and am not a drug-seeker. <br />
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Hopefully this depression will end soon. I haven't seen my husband in two weeks but he surprised me yesterday by telling me he is coming home tonight! <br />
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I am not a good diary keeper, but blogging seems to be helpful. It is a bit strange that I can put things out there to complete strangers. Thank you for listening.<br />
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May you have a bright and lovely day.elisehttp://www.blogger.com/profile/18267941174645425325noreply@blogger.com4tag:blogger.com,1999:blog-3546657182405200907.post-40362438234295081382009-09-27T23:35:00.000-07:002009-09-28T11:54:13.691-07:00can't sleep and pregnant kittyI've been lying in bed since 8:30pm trying to sleep (very tired). My legs and feet have hurt all day and nothing has been helping - can't get comfy. I think I overstretched something in PT on Friday. :( I'm hoping a solid dose of my pain meds will knock me out soon. <br />
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Another thing that is keeping me up is thoughts of an abandoned(?) kitty that's made my backyard her home for the last week or so. I figured out yesterday that she is pregnant. She is a tiny Siamese. She'll let me get pretty close but won't let me touch her. She used to hop the 6' fence in my backyard but she is too big now to do so. She's been starving and I feel terrible that I didn't realize this sooner. I put some food, water, makeshift catbox (she is housetrained), and a "bed" on my back patio where she's been sleeping. She is responsive to my efforts in this respect.<br />
It's been really hot here for the last few days, which doesn't help my worrying. She's clearly uncomfortable and the movements in her belly are big enough to think that she'll have the kittens soon. She's tried to get into my house, with success, yesterday. She appreciated the AC and seemed more comfortable physically. I left the door open for her today and she didn't want to leave. I have a cat already and keeping them apart is very difficult. Since I don't know anything about this cat, I don't want to get my cat sick. I thought the kitty had left my house but, hours later, I discovered she had been hiding under the couch (she camouflages well!). My friend and I shooed her out of the house out of concern for my own cat's comfort/health.<br />
I've knocked on doors around the neighborhood to see if anyone is looking for her, but I've had no success. My concern is that she is from one of two neighbors that treat their animals poorly. The fact that she is pregnant is one indication that they've slacked off on good care. <br />
Do I leave the cat outside and hope that she'll feel comfortable enough to have her kittens in the box I made (cardboard box with towel inside and "windows" cut into the sides for airflow and for lookout)? I can't catch her, so should I try trapping her and then isolate her in a room in my house? Do I call the county shelter to come pick her up? Neighbors I was able to speak with today, who live on either side of the "irresponsible" ones with lots of animals, said that they would not trust them to take care of a pregnant cat. The people who I think possibly own the cat, did not respond to my knock even though I could tell they were home. I did not look like a solicitor for sure. I don't want to come off as judgmental but I have a really sensitive heart when it comes to animals and mistreatment.<br />
Oddly enough, I've been praying for strength to go into the local shelter to adopt an adult cat as a companion to my cat. Do I take this cat in? Is it wrong, especially if no one claims her? I'd get her neutered as soon as possible, and find good homes for the kittens (hopefully neuter them too beforehand). If I can catch her, I'd definitely bring her to the vet as soon as possible to check her health, see if she has a microchip, get her neutered, and update shots as needed. I don't think she's ever been to the vet (was just a kitten herself a year ago). I'd feel better letting her go if I know she can't have more kittens and is healthy. <br />
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Anyone with advice is welcome to respond. I am really torn on what to do. <br />
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Thanks. I'm going to try bed again now that I've gotten the kitty issue off my mind for now.<br />
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TTFN,<br />
~eelisehttp://www.blogger.com/profile/18267941174645425325noreply@blogger.com4tag:blogger.com,1999:blog-3546657182405200907.post-51201997482392407542009-09-23T18:42:00.000-07:002009-09-23T18:42:55.476-07:00Movin' to Seattle<span style="font-family: Verdana,sans-serif;">I've been reluctant to post on this subject but I think it is time... we're moving! This is a good thing for so many reasons but I am mostly excited to live in Seattle. Where we live now is a hot, dry, too sunny, miserable place during the 8 months of summer. We both love the winters here, which are wet and cool. I also miss my native New England and the Seattle area feels more like home. <br />
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<span style="font-family: Verdana,sans-serif;">Currently, my hubster is living in a rental in the Seattle area by himself until I can join him. I gotta say that living in two states sucks. He got a great job and is able to give up being self-employed, which is a good thing considering these economic times. He is less stressed and will now live only 5 minutes from work. <br />
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<span style="font-family: Verdana,sans-serif;">I am giving up a good job that I've had for 9 years, but my boss has agreed to let me stay on part time via computer and Skype to do the things I am best at - editing and grant preparation. It will take the new person a long time to pick up the daily duties I have and to learn my boss' personality, never mind these more specialized tasks. </span><span style="font-family: Verdana,sans-serif;">We are calling this a "soft transition". I should also explain that my boss is amazing and has given me a lot of flexibility (no pun intended) to work around my EDS issues, including letting me take 90 minutes from my day to go to PT twice a week. <br />
</span><br />
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<span style="font-family: Verdana,sans-serif;">I'll be able to work from home and not deal with a 30 minute commute every day. I think that will help my EDS and fatigue. </span><br />
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<span style="font-family: Verdana,sans-serif;">I'm having serious second thoughts about my plan to help my boss. I thought I would be strong enough to live here by myself until the end of the year. We've had two really lovely weekends up in Seattle together, including a surprise birthday weekend in Victoria, BC. It's been sooo difficult to come back home without my Love. Now we won't see each other for 2+ weeks because of work deadlines. At least I have my cat, but even she is not enough. </span><br />
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</div><div style="font-family: Verdana,sans-serif;">All of our furniture is still with me at our house, but we are planning to ship it up to our rental in October. I'll stay here until ___ and then bring myself, my cat, my car, and the little bit of stuff I'll keep with me to our new home. We know we are very lucky to have this opportunity to move to Seattle but we also can't afford to sell our house, so we have to find renters. It is hard to think of other people living in my home, eating from my fruit trees, and clipping my flowers. It's probably the fear of the unknown as well - I might feel more comfortable with the tenants once we pick good ones.<br />
</div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;">I'm excited to meet some new EDS friends in Seattle. I've already found two EDSers I think I'll get along with, and one of whom lives not far from us. Ironically, I've just met two EDSers here in my current area. Perhaps God is using me to help them meet and provide support to each other - they both have young children (same age actually) with EDS as well. <br />
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</div><div style="font-family: Verdana,sans-serif;">I've got a lot on my mind that I'd like to share but it's all slipped away at the moment. My growling stomach is using all that brain energy! :)<br />
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</div><span style="font-family: Verdana,sans-serif;">Thanks for reading!</span>elisehttp://www.blogger.com/profile/18267941174645425325noreply@blogger.com3tag:blogger.com,1999:blog-3546657182405200907.post-22125734824018147582009-09-07T14:19:00.000-07:002011-01-09T13:35:00.420-08:0030 Things About My Invisible Illness You May Not Know: Ehlers-Danlos SyndromeNational Invisible Chronic Illness Awareness Week is held annually in September and is a worldwide effort to bring together people who live with invisible chronic illness and those who love them.<br />
<br />
30 Things About My Invisible Illness You May Not Know:<br />
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1. The illness I live with is: Ehlers-Danlos Syndrome, Hypermobility Type<br />
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2. I was diagnosed with it in the year: 2006<br />
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3. But I had symptoms since: birth, though the pain aspect didn't start until my teens.<br />
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4. The biggest adjustment I’ve had to make is: to my expectations of myself and what I can do with my husband, around the house, with my friends, for a career... <br />
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5. Most people assume: I'm "normal" (read: not in pain, exhausted, etc)<br />
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6. The hardest parts about mornings are: waking up unrefreshed. Putting my painful feet on the ground. Wondering if any of my joints are going to act up.<br />
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7. My favorite medical TV show is: House, MD for the humor (the medical stuff is not always accurate though)<br />
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8. A gadget I couldn’t live without is: how do I choose? I think it would have to be my car. <br />
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9. The hardest part about nights is: knowing I am not going to get enough refreshing sleep.<br />
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10. Each day I take ~15 pills & vitamins. <br />
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11. Regarding alternative treatments I: have had various results. I believe they should be complementary to traditional medical treatment.<br />
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12. If I had to choose between an invisible illness or visible I would choose: Invisible, but my snarky answer is to say neither!<br />
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13. Regarding working and career: On a good day, I hope to go back to school for a Master's in teaching or acupuncture but I know there will be limitations on what I can do after graduation - like I can't handle a large class of students and would probably have to do special ed or tutor. I can never be self-employed and I don't think I can work full time. <br />
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On a bad day, I don't think anything is possible and just want to hide under the covers. <br />
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14. People would be surprised to know: I used to love middle eastern dance.<br />
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15. The hardest thing to accept about my new reality has been: the effect it has had on my marriage. I was diagnosed 6 weeks after our wedding and I've since had more pain and joint problems than ever before. I feel like I've let my husband down, though I know that is not true. <br />
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16. Something I never thought I could do with my illness that I did was: create realistic expectations for my work performance with my boss with no repercussions. Help others with the disorder.<br />
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17. The commercials about my illness: what commercials?!<br />
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18. Something I really miss doing since I was diagnosed is: dancing.<br />
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19. It was really hard to have to give up: dancing. Cute shoes (just kidding!).<br />
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20. A new hobby I have taken up since my diagnosis is: blogging and being proactive with the EDNF.<br />
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21. If I could have one day of feeling normal again I would: spend the day in bed with my hubby.<br />
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22. My illness has taught me: to listen to my body. Also, to know who my true friends are.<br />
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23. Want to know a secret? One thing people say that gets under my skin is: "You are too sensitive."<br />
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24. But I love it when people: let me help out with projects that utilize my strengths without taxing me - I can be useful, creative, and maintain my boundaries. (I also have to say that I love it when people accept that I need to go home and sleep all day)<br />
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25. My favorite motto, scripture, quote that gets me through tough times is: "I love you."<br />
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26. When someone is diagnosed I’d like to tell them: it's not all in your head. AND That there is no such thing as an EDS specialist MD, you are the specialist who needs to educate your health care professionals (educational material and support are at www.EDNF.org.<br />
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27. Something that has surprised me about living with an illness is: that I finally have a name that explains why I've had the problems I've had forever, and that I am relieved to have this diagnosis. <br />
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28. The nicest thing someone did for me when I wasn’t feeling well was: make dinner and do the dishes! On a medical level, was to believe that I was in pain and work with me to find a pain med that helped take the edge off.<br />
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29. I’m involved with Invisible Illness Week because: it's a chance to get the word out about EDS, which affects 1:5000 people and is more common than people think. <br />
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30. The fact that you read this list makes me feel: like one more person has learned that Ehlers-Danlos Syndrome exists.<br />
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Do you want to write your own "30 things..."? <br />
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Get the scoop at invisibleillnessweek.com!<br />
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Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.comelisehttp://www.blogger.com/profile/18267941174645425325noreply@blogger.com2tag:blogger.com,1999:blog-3546657182405200907.post-12313692486508651502009-09-07T11:15:00.000-07:002009-09-07T11:17:35.781-07:00Read Nkolika's blog - "An Artist's Musings: How flexible are you?"I know I haven't been too active here but life has been a bit chaotic - most of it non-EDS related.<br />
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I found this informative post from a lovely woman - an artist and MD - in Africa. She found a video on "Snake Woman" (cringe worthy!) and provides a summary of EDS and hypermobility. She is also a very good artist (check out the link to her amazingly inexpensive artwork on Etsy).<br />
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Check out Nkolika's post here and watch the video.<br />
<a href="http://nkolika-anyabolu.blogspot.com/2009/08/how-flexible-are-you.html">An Artist's Musings: How flexible are you?</a><br />
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(Also read her other posts.)elisehttp://www.blogger.com/profile/18267941174645425325noreply@blogger.com0tag:blogger.com,1999:blog-3546657182405200907.post-60801564378071166882009-05-25T20:09:00.000-07:002009-10-17T22:56:35.864-07:00When things are tough...<div style="color: white;"><span style="font-family: arial; font-weight: bold;">"I try to hold on to this world with everything I have </span><br />
</div><div style="color: white;"><span style="font-family: arial; font-weight: bold;"> But I feel the weight of what it brings, and the hurt that tries to grab </span><br />
</div><div style="color: white;"><span style="font-family: arial; font-weight: bold;"> The many trials that seem to never end, His word declares this truth, </span><br />
</div><div style="color: white;"><span style="font-family: arial; font-weight: bold;"> that we will enter in this rest with wonders anew </span><br />
</div><div style="color: white;"><br />
</div><div style="color: white;"><span style="font-family: arial; font-weight: bold;"> But I hold on to this hope and the promise that He brings </span><br />
</div><div style="color: white;"><span style="font-family: arial; font-weight: bold;"> That there will be a place with no more suffering </span><br />
</div><div style="color: white;"><br />
</div><div style="color: white;"><span style="font-family: arial; font-weight: bold;"> There will be a day with no more tears </span><br />
</div><div style="color: white;"><span style="font-family: arial; font-weight: bold;"> No more pain, and no more fears</span><br />
</div><div style="color: white;"><span style="font-family: arial; font-weight: bold;"> There will be a day </span><br />
</div><div style="color: white;"><span style="font-family: arial; font-weight: bold;"> When the burdens of this place </span><br />
</div><div style="color: white;"><span style="font-family: arial; font-weight: bold;"> Will be no more</span><br />
</div><div style="color: white;"><span style="font-family: arial; font-weight: bold;"> We'll see Jesus face to face"</span><br />
</div><div style="color: white;"><span style="font-family: arial; font-weight: bold;"> Jeremy Camp "<a href="http://www.rhapsody.com/jeremy-camp">There will be a Day</a>"</span><br />
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</div><div style="color: white;"><br />
</div><div style="color: white;"><span style="font-family: arial;">It's been a while since I've been physically and psychologically challenged like I've been for the last two month. I count myself lucky compared to so many but it's hard to get outside myself when pain settles in. When I am not listening to NPR I listen to Christian rock on the radio. The song above has been particularly comforting lately. <br />
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Great for medical research, including studies on EDS, NIH put out calls for applications with lots of money to offer for good grants but the deadline was incredibly short (~6 weeks!) and occurred at the end of April. My boss is the director of a lab and an institute that study genetic disorders and I am his assistant - I put the grants together and edit them. I'm not going to bother explaining the details but we put together an admin supplement, a Challenge grant, and our annual (May 1) Progress Report for the institute. We also had a big meeting of our Internal Advisory Board just before these deadlines - I have to run the A/V. I was very stressed out. For those of us with EDS, stress and hormones can play big factors in how well our bodies hold together. <br />
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Since the end of April, my left shoulder has been unstable. This is the one I dislocated several years ago. Hormones added their contribution and now it's been subluxed for the last 10 days straight. I'm at the point where I need to consider options, including having a stronger pain reliever (currently taking only tramadol and aleve). I want to avoid surgery and will discuss this with my doctor tomorrow. Everyone who cares about me has been suggesting surgery but it's not that simple in EDS. I don't know that it would even help. My MD may say that my shoulder doesn't need surgery, which would be a relief but then I worry about long-term pain/instability. <br />
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I've discovered I really don't like the attention a brace brings to the situation. I've had to wear a sling for my shoulder and everyone asks why and how, etc. It gets so tiring. Any suggestions on how to deal with inquisitive folks, including family who tends to worry?<br />
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My lovely husband has been stressed out about my pain and potential disability as well. I don't want to worry him but I also can't lie about my condition. There is so much impact on our relationship from my pain, inability/challenge to do things (including around the house), struggle to contribute to the household income vs needing to work less. ...and other more intimate stuff.<br />
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I am currently changing meds too. My MD wants to shift from Effexor to Cymbalta. I don't know if my incredible fatigue is from the meds or from the pain? Both? As the pain has gotten worse, my anxiety and depression has increased as well. When my doc and I started the switch in meds, I was doing ok mentally and my pain wasn't so bad. How can you know when the body is going to crap out on you?<br />
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I meet with my PCP tomorrow and a therapist on Friday. I'll see what they think. <br />
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Thanks for listening. <br />
~e<br />
</span><br />
</div>elisehttp://www.blogger.com/profile/18267941174645425325noreply@blogger.com4tag:blogger.com,1999:blog-3546657182405200907.post-10852443608156943632009-04-03T11:28:00.000-07:002009-04-03T11:44:16.780-07:00Just a quick update - hi<span style="font-family:trebuchet ms;">Hi lovelies,</span><br /><br /><span style="font-family:trebuchet ms;">I've been a bad blogger for the last while. Life, EDS, work...who knows. I just haven't made the time. </span><br /><br /><span style="font-family:trebuchet ms;">Mostly, it's been depression and anxiety taking over. I have a new shrink that I like (Dr. H). She takes the time to actually sit and figure out the best strategy for working with these issues. She doesn't double book appts and spends 1/2 hour with me. Dr. H also suggests things besides meds to help me deal with stress and anxiety. I hope I can get an appointment with the therapist she suggested too. Meds and therapy have always worked best for me - the most recommended strategy for effective treatment of depression and anxiety. Hmm, I actually fall into a "normal" category for once! I take two meds - she's adjusting one to handle the current acute problems and then will taper the second one to get me off it and on to Cymbalta. Dr. H thinks Cymbalta will help with my EDS pain - I've also heard that. We'll see. If it can eliminate some of the side effects too, that would be great!!!</span><br /><br /><span style="font-family:trebuchet ms;">I've been thinking about a lot of friends lately - some I know in person, others only virtually. Why do I struggle to reach out to people? When I have the energy, I don't have the time (or it's while I am at work and can't talk). When I have the time, I don't have the energy. Nasty cycle. I hope you know I am thinking of you, ok? </span><br /><br /><span style="font-family:trebuchet ms;">Got some sort of GI bug yesterday. Might actually be able to go home early from work today. Wishful thinking. I'd rather work a full day and NOT have this bug though. </span><br /><br /><span style="font-family:trebuchet ms;">It's been exceptionally windy here for the last week. Can't complain too much. It's been over 60 degrees (high 70s) for a couple of weeks now. Spring is here in NorCal. I miss my home back east but I don't miss the weather! Ok, I do have one complaint. The wind blows all the crap (dirt, pollen) from the north of this loooong valley down to where I live. Makes it hard to breathe and/or makes those with allergies miserable! I'm in the former category. </span><br /><br /><span style="font-family:trebuchet ms;">Wishing you all well and happy Friday. Until next time...take care!<br /><br />(PS: the font I am using here is called trebuchet. Read about the real trebuchets here: <a href="http://en.wikipedia.org/wiki/Trebuchet">http://en.wikipedia.org/wiki/Trebuchet</a> - kind of strange that someone would name a font after this war machine.)<br /></span>elisehttp://www.blogger.com/profile/18267941174645425325noreply@blogger.com3tag:blogger.com,1999:blog-3546657182405200907.post-70956481657232222572009-03-19T15:36:00.000-07:002009-03-19T16:02:21.286-07:00I love SNOPES.com!Hi everyone,<br /><br />This is a silly post but maybe it will save you time or stress when you are forwarded a frantic email or text message about some dire event or nasty stuff in the water.<br /><br />I almost always check <a href="www.snopes.com">www.snopes.com</a> and/or Google to see if there is truth in an email or text someone just sent me, that's also obviously been forwarded by 20 other people before them, that purports <span style="color: rgb(0, 102, 0); font-weight: bold;">something horrible will happen if... </span>or <span style="color: rgb(51, 51, 153); font-weight: bold;">did you know...</span> or, like the latest one about <span style="color: rgb(102, 0, 0); font-weight: bold;">impending doom... </span>at <a href="http://www.snopes.com/crime/gangs/walmart.asp">Wal-Mart</a>!<br /><br />This important tidbit about future shootings at Wal-Mart was actually passed on verbally by a well meaning friend who had gotten a text from another friend who had... and you know the rest. While on the phone with her, I immediately checked <a href="http://news.google.com/">Google news</a> AND Snopes to confirm my suspicion that this was indeed a hoax/rumor.<br /><br />I like that the Snopes folks also explain things logically, whether true or false, and will use scientific data as well. <a href="http://www.snopes.com/horrors/techno/hospital.asp">Here </a>is an interesting example about cell phone use in hospitals.<br /><br />:)elisehttp://www.blogger.com/profile/18267941174645425325noreply@blogger.com0tag:blogger.com,1999:blog-3546657182405200907.post-7719465525919823242009-03-11T15:46:00.000-07:002009-03-11T15:57:49.528-07:00Comedian Dustin Woods<span style="font-family: verdana; color: rgb(0, 102, 0);">Hi everyone,</span><br /><br /><span style="font-family: verdana; color: rgb(0, 102, 0);">I just found this EDSer, Dustin Wood, online via the video below. I'm not into stand-up comedy, but he is actually pretty funny and gets the word out about EDS and POTS. </span><br /><br /><a style="font-family: verdana; color: rgb(0, 102, 0);" href="http://www.acakadut.com/videos/v-xLkqGoLDlSs/Funniest-Redneck-Stand-Up-Comedian-Ever-Dustin-Wood.html">Funniest Redneck Stand Up Comedian Ever Dustin Wood Video</a><br /><br /><span style="font-family: verdana; color: rgb(0, 102, 0);">Dustin also has a lovely cause to help people with depression. Find out more about the "Feel Better Letters" on his myspace here: </span><br /><a style="font-family: verdana; color: rgb(0, 102, 0);" href="www.myspace.com/comedyforacause">www.myspace.com/comedyforacause</a><br /><br /><span style="font-family: verdana; color: rgb(0, 102, 0);">Keep up the great work Dustin! Depression really sucks.<br />Sending some more smiles out there,</span><br /><span style="color: rgb(0, 102, 0);">~e</span>elisehttp://www.blogger.com/profile/18267941174645425325noreply@blogger.com1tag:blogger.com,1999:blog-3546657182405200907.post-25062556712297454582009-02-26T17:17:00.000-08:002009-02-26T17:36:49.842-08:00"Women who are sick..."I was reading Laurie Edward's blog "<a href="http://achronicdose.blogspot.com/">A Chronic Dose</a>: A Chronic Illness Blog" and found her post "On Work and Chronic Illness". In the post, she links to an article that I then read and excerpted from below.<br /><br />"Women who are sick find themselves in a triple bind: unable to excel at their career because they are sick; unable to take good care of their health because they are working; unable to quit because they need the health insurance they can get only through a job." From "<a href="http://www.more.com/work-money/work/chronic-illness/?page=1">Ill in a Day's Work</a>" by Donna Jackson Nakazawa<br /><br />Wow, did that thought hit home! I work in a job, not a career. I'd love to go back to school to get a teaching certificate and Master's degree in Intercultural Education. The economy is the primary reason I am not moving forward with classes part time, but the ultimate issue holding me back is can I do it? Classes are not the problem; I worry about the teaching internship and student teaching a whole class. Tutoring and small groups are more my style but gotta jump through the hoops first. Then inertia seems to take over when I am not feeling good -- everything seems overwhelming and the daily grind at ye ole desk job is something I can always fall back on (helps that my boss lets me sleep in or work from home sometimes).<br /><br />Just thinking of leaving this job sets off tons of stress. Yet working full time is painful. I think I mentioned in a previous post that my productivity at work is ~20% these days. I don't think I'd qualify for disability but my quality of life definitely suffers because I don't get enough rest.<br /><br />I carry our health and dental insurance through work. My love is self-employed and he pays the majority of the big bills. He used to have his own health insurance but it was so expensive and he could get on my work policy for peanuts. It's the least I can do to handle our insurance and try to keep the house from complete disaster (easier said than done!).<br /><br />Ever get the feeling that life is a trap? This point is where I have to give to God and trust that I will be where I am needed most. Sigh...elisehttp://www.blogger.com/profile/18267941174645425325noreply@blogger.com8