I love my new ring splints! But I need to remember to wear them more often - I tend to take them off then forget to put them back on.
I've not been posting much here of late, though I do have a tendency to lurk around quite a bit. This week/month/year has been difficult ; new medication to adjust to, new potential diagnosis in the works, new symptoms no one seems to be taking seriously, so I'm pulling out all the stops in my alternative medicine experience and boning up on my herbology skills to try and sort it out myself (I wouldn't recommend doing this to anyone, but I don't have any options left at the moment - I can either watch my blood pressure rise to the point I have a stroke or I can do something about it myself, as it's clear my GP won't).
Mostly, I haven't had much to say because thanks to the benepali, I'm finding I have energy again, I can move again, and I'm trying to enjoy life as much as possible, and that means being on the computer less and less. The Dutchman and I are looking for an UsHaus together, and there's talk of another ring on my finger in the near future. So there's adventure and excitement and enjoying as much life as I can manage to cram in between injections that BURN LIKE ALL THE FIRES OF HEL (thank you, emla cream, I sing your praises for dulling the pain) and yoga sessions at home for better flexibility. I'm not concentrating on anything right now other than sucking the marrow out of life.
Not that there aren't still challenges there - my garden was nearly unworked through the entire year when the meds failed, and I have already decided I'm going to really have to change how I garden in future. I'm done lifting anything heavier than 4 kilos...for a former weight lifter that is a major blow to my self-perception! But maybe-vascular-EDS isn't playing around lately, my heart races when I rake wood chip for longer than five minutes so there's no way I can maintain a garden like I used to. My vision changes aren't great either - super-dry eyes and I'm squinting constantly, so tomorrow it's to the optician to get it all looked at and get some solar-tint glasses so I can drive confidently again, knit and do cross-stitch and all the fun stuff I used to do.
I just find while I sometimes need to have a nice, therapeutic rant, I have less and less to say, because I'm trying to _do_. Sometimes, I overdo it, but as I keep feeling an ache in my left shoulder that no one seems all that fussed about, I don't ever want to feel like I wish I had done something on my bucket list.
I thank each and everyone one of you for bearing witness to my struggling forward and trying to figure out our frustrating, infuriating, amazing bodies. Love, love, love!
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Silvergilt
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Have been wondering how you're doing, silvergilt...am vvv much relating to your thoughtful comments...especially re EDS & gardening (am still only able to potter aroud: a bit of watering, pulling the odd weed...but it's lovely just to be out there...am lucky my husband is devoted to the garden!)
Love back to you! Sorry I've not been in touch, but so much happening, and when the Dutchman is here, we tend to just throw ourselves into adventure and I don't really think about checking up online very much. But you're in my thoughts!
Your spirit is admirable! I, too, have been trying to DO and, just like you, sometimes I over-do and my body lets me know I need to rest. I have a huge landscape with many perennial beds. I've had to cut way back on the work I'm able to accomplish out there. Hubby and landscape helpers take in the slack but I will admit it is very difficult for me to not just run outside and grab a rake, or shovel, pruners, watering can or shears.
I may have a clue re: your shoulder. I also have a sore left shoulder and mine has been diagnosed as being "impinged".
In my case, I believe that lupus weakens/attacks my tendons/ligaments, as I also have torn tendons/ligaments in my right elbow (tendinitis).
I had a cortisone injection into my shoulder in February and also went to physio (6 weeks worth) for it and that did wonders. However, just recently, it is getting sore again so I feel a trip back to my Sports Doc is in my future.
Glad you are in a good frame of mind these days - that is essential. I am not quite there fully (yet) as every ache, pain, injury, symptom or mental difficulty really wears on me. I do feel very blessed to have my very loving and supportive husband as well as all the caring and super smart folks here.
I haven't been offered any physio for anything (which is fair enough as it's too far for me to get the hospital anyway at this point). I am under investigation for a form of Ehlers Danlos Syndrome so it's possible the shoulder and hip problems are a combination of that. Still working on it.
Oh believe me, I have horrible days in there - the past year was grim, and two-three months with no treatment was me feeling my worst, so right now I'm going to do all I can while I can.
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Anyone living in the London area? Meetup and get out :)
Lupus, life, and counselling
Is this all there is; pain day and night and no life?
Life is hard but I am harder :P
