Just to let you all know that the money from the sponsored walk around Derwentwater is now all in. I raised £62 (from neighbours, friends and folk at the village coffee morning last week) as well as Lupus awareness at the coffee morning and on the walk itself. 🐺😉
Thanks again to everybody here who encouraged me to try the walk (even when I had second thoughts about it) and who have reassured me since the walk when I discovered I’d taken double Prednisolone the night before! Turned out to have been a good call! 😂🤣
Thanks too to KrazyKat for the fabulous poem enjoyed by all my friends. 👏🏻 So glad to be part of this supportive, positive and caring community. 👍🏻 Thanks to all of you! 🤗😘 Spotty 💕
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That is a very good question Brook! 🤔 At present I’m still feeling a bit drained so I’ll have plenty of time to think about that whilst resting. 😌 I have booked a couple of nights for me and Hubby in Keswick for early November, so weather permitting we might get up one of the hills. ⛰ We’ll see how his heart is doing as he has a problem with the rhythm at present following open-heart surgery last year. But I’ll keep you posted. 🤗😘
OH my! Your husband had open heart surgery? Just last year? You two must really appreciate each other’s help. You are obviously a strong woman! Pls don’t over do, and no more double dosing! 😆
Yes, we do indeed depend on each other and luckily we are opposite in that he is good in the morning and I’m better at night (usually anyway). But when somebody you love has gone through something like the mitral valve repair (on my birthday!!) you muster all the strength you have to nurse them and help them recover.💪 I have to say our neighbours were also a great tower of strength to us despite being even older than we are! Hubby was up a hill with me last November (Walla Crag above Keswick) only 4 months after the op. 🤭 And that was without steroids!😂 He is such an inspiration. 👍🏻
Thanks so much Wendy! 😊 So sorry to hear your hip is causing trouble just now. 👎 I get hip bursitis for no apparent reason (I think WE know the reason!) and it is very painful and takes ages to get better. I hope yours improves soon. Is it arthritis?
Sorry to see your post about recurrent UTIs too. 😫 Horrible! They’ve plagued me too since my teen years but I do have bacteria causing it which has been found to be coming from an atrophying kidney. So not the same as you. I hope and pray they get to the bottom of your problem and you get relief from the curse of UTIs.🤞🙏🏻 I’m on a permanent prophylactic antibiotic (changed every 6 months) to keep mine at bay.
Unfortunately I just can’t trust how they read scans, xrays and tests etc. locally. Apart from my own history, I run a support group and hear time and time again that scans and X-rays are not read or interpreted correctly.
Luckily I am seeing my lupus doctor in 2 weeks time, so brilliant timing to get his opinion on all of this.
I want to know where the blood is coming from?
Anyway, enough grumbling, I’m doing relatively well compared to where I was before.
I know what you mean about the reading and interpretation of scans. Do they even tell you the whole story? 🤷♀️ Only a few years ago the man operating the scan asked me if I’d ever been told before I had a duplex system on my good kidney? No!! Why hadn’t I been before the age of 61??
Anyway, good luck Wendy and I’ll keep my fingers crossed that your lupus dr is able to help and advise. 🤞 🤗
By the way, I have had hip bursitis twice and it is pure agony! So 2 steroid injections to date. Like you, they never say what is causing it, but as lupus causes inflammation in the body and I've also experienced tendonitis and tennis elbow and swollen per anserine etc, I think it is safe to say that my version of lupus causes soft tissue issues.
As for my urology investigations, the clinic was called the Haematuria Day Surgery Clinic and I had blood in my urine but they can find nothing wrong. If you look up haematuria it says "In hematuria, your kidneys — or other parts of your urinary tract — allow blood cells to leak into urine. Various problems can cause this leakage, including: Urinary tract infections. These occur when bacteria enter your body through the urethra and multiply in your bladder." If there is no infection, my kidneys are leaking the blood into my urine??
Anyway, I will keep you all posted on what my lupus doctor says about it all.
Sorry I didn’t reply earlier - I’m no longer getting notification by e-mail when anybody responds so I have to keep checking on the site and overlooked your last response. Sorry.
Have you tried ‘Blume’ produced by an on-line company called Zipvit? It is a glucosamine and emu oil gel. My hubby and I use it regularly - he for his arthritic complaints and me for the soft tissue/connective tissue problems caused by Lupus. It is really good stuff. 👍🏻 The other thing I found useful for the hip bursitis (in both hips) was exercises I got off the internet and demonstrated by physios in the States. I was referred for physio here for the hip bursitis but had recovered using the Blume and exercises before an appointment was ever offered!! 😖 The Blume isn’t cheap but it really helps. Having the hip bursitis in both hips made trying to find a comfortable position to sleep almost impossible. I had pillows tucked around me to support my knees and to stop me rolling onto my side which made the bursitis even worse. 😥 It took a long time to recover but the Blume helped to ease the pain enormously.
Regarding your blood in the urine, how on earth can they say there is nothing wrong? 🤔🤷♀️ It is not normal to have blood in the urine so there MUST be something wrong. From the definition of haematuria you found it does imply the blood is leaking from the kidneys as there is no infection present. 🤨 I hope they discover what the problem is and how the blood is getting into the urine. Worrying for sure.
Many thanks Barbara. 😊 I’m wondering what to do as my next challenge 🤔 I have to say my Body Balance and Young at Heart classes seemed challenging enough for me this week! 😂🤣 I’ll keep you posted.
No classes for me this week as we’re off to Norfolk on Monday to stay with friends (from Edinburgh). She let me know the weather forecast is cloudy and wet so that sounds perfect.
Thanks Paul. It was a pleasure doing it and I just wish I could have raised more money. But I did raise a LOT of awareness so that is good too.😉 Thanks again for the encouragement. 👍🏻 I’ll have a think about what I can do next, but in the meantime I’m still placing literature in dr surgeries and other public places. 😀
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Update
Rheumatologist update
Hydrogen breath test update
Update for the crazy feeling
