It happens. Whether you don't want to "be depressing," or you just don't want to have to explain all the facets of your disorder, "fine" tends to be the preferred response even when things aren't at all. I've started to say things like "I'm hanging in there." It allows the person to whom I'm speaking to ask follow up question if they want, but doesn't put pressure on either of us to go into detail. Do you have a response that you like to use? Let us all know in the comments! 
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I saw this earlier today, and I just couldn't resist passing it on.
 I have been on a major downhill slide with my EDS lately. I know EDS tends to be progressive, especially at certain times in females' lives when hormones tend to go through some changes (pregnancy, menopause, etc.), but I really did not expect it to be this bad this quickly. I feel like every day I'm falling apart a little more. I have very few joints left in my body that do not dislocate sporadically and painfully.
Due to all of this, I've been homebound quite a bit lately. It has been really difficult having so many days where I know fun things are happening all around me, but I cannot be involved. Especially with the weather lately (snow, ice, and cold), I've been afraid of falling and making my situation even worse. I think all of this is a long way of saying that I really, really dislike winter in Pennsylvania. It does look pretty from the window, but it's doing a number on my joints and on my mental well-being. I'm hoping for a early and warm spring!  I have been spending most of my time in center city Philadelphia lately. Not because I'm checking out the newest and hottest restaurants or gallery openings. Nope. What I have been doing is checking out some of the new hospital buildings and radiology equipment. Because I'm cool like that.
I managed to squeeze a ton of my recurring doctor appointments and tests in before the end of the year (while my deductible is met, of course). Which means I have the 3 weeks before Christmas packed full of charts, needles, monitors, and the like. I also have to get an arthrogram on my shoulder to find out what is wrong with it. With all the radiology tests I've had in the past few years, I believe this last one may put me over the edge. I won't need a Christmas tree this year--I will be glowing just like one. Merry Christmas to me! And Happy Holidays to you! Functional digestive symptoms and quality of life in patients with Ehlers-Danlos syndromes: results of a national cohort study on 134 patients.
Abstract BACKGROUND AND OBJECTIVES: Ehlers-Danlos syndromes (EDS) are a heterogeneous group of heritable connective tissue disorders. Gastrointestinal manifestations in EDS have been described but their frequency, nature and impact are poorly known. We aimed to assess digestive features in a national cohort of EDS patients. METHODS: A questionnaire has been sent to 212 EDS patients through the French patient support group, all of which had been formally diagnosed according to the Villefranche criteria. The questionnaire included questions about digestive functional symptoms, the GIQLI (Gastrointestinal Quality of Life Index), KESS scoring system and the Rome III criteria. RESULTS: Overall, 135 patients (64% response rate) completed the questionnaire and 134 were analyzable (123 women; 91%). Mean age and Body Mass Index were respectively 35± 14.7 years and 24.3± 6.1 kg/m(2). The most common EDS subtype was hypermobility form (n=108; 80.6%). GIQLI and KESS median values were respectively 63.5 (27-117) and 19 [13.5-22]. Eighty four percent of patients had functional bowel disorders (FBD) according to the Rome III criteria. An irritable bowel syndrome according to the same criteria was observed in 64 patients (48%) and 48 patients (36%) reported functional constipation. A gastro-esophageal reflux disease (GERD) was reported in 90 patients (68.7%), significantly associated with a poorer GIQLI (60.5±16.8 versus 75.9±20.3; p<0.0001). GIQLI was also negatively impacted by the presence of an irritable bowel syndrome or functional constipation (p=0.007). There was a significant correlation between FBD and GERD. CONCLUSIONS: Natural frequency of gastrointestinal manifestations in EDS seems higher than previously assessed. FBD and GERD are very common in our study population, the largest ever published until now. Their impact is herein shown to be important. A systematic clinical assessment of digestive features should be recommended in EDS. Full article here.  That's me on the couch, patiently waiting for painkillers to kick in to I can feel a bit human and maybe accomplish something. I'm wearing a soft neck brace because my main problem today (and many days) is significant cranial cervical instability (CCI) and an abnormal clivo-axial angle, which causes, basically, a terrible neck migraine. The brace manages to hold things in place temporarily. It sounds a little crazy, but I cannot wait for my appointment with Dr. H. Unfortunately, his wait list is so long that I completed the paperwork in September, and my appointment is in April. But I'm hopeful that like so many other EDSers, I will get fixed.
 So I've been pretty quiet lately. The reason for this is because of the little kitten pictured here. I am a kitten foster mom, volunteering with City Kitties, a local rescue group. Because I am around a lot due to my EDS, I have learned to bottle feed kittens and to administer medicine. I have therefore become the go-to for tiny and sick kittens. Mara is our latest foster, and she is a sweetheart. She is finally finished with her azithromycin (fish flavored, of course), and she is beginning to feel better and run around like a kitten should. She still has to be kept separate from our resident cats, so she gets to stay in the "kitten room," otherwise known as the the master bedroom in our tiny house (Kitten: 1 Humans: 0). Eventually, she will get to move downstairs with the rest of the brood, but for now, I'm enjoying my time with my tiny foster kitty. She reminds me that even though I'm sick, I can still take care of others, and succeed at it.
| Amie K.EDS warrior. Find me on Twitter and Inspire as LilacZebra. Questions, comments, and/or suggestions? Email me ArchivesCategoriesAll |
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