Warning! Long post, so grab a cup of tea/coffee first. This will either make you laugh or cry. You may need a Hobnob half way through to sustain you, even if you’re on a low carb diet! 😀
Morning all! Nope, it’s already afternoon. Doesn’t time fly when you’re having fun!🤪 Let’s just say I’m not in a very good place just now and need a) to vent, and b) some advice & moral support. I’m writing this from flat on my back in bed, where alternating with the sofa, making meals and a trip to the rheumatologist yesterday, I’ve spent most of the last 6 days! Not like me at all and definitely not good for my bone health 😡 Dogs have started taking themselves for a walk!! OH has taken to talking to himself between Zoom and Office Teams meetings. More as to the reason for this incapacity & domestic disruption later.
So back to the DEXA dilemma of earlier posts. Scan in 2018, 6 months after starting Pred for PMR showed:
Bone Mass Density (BMD) lumbar spine 0.937, T-score -2.0
BMD L hip 0.707, T-score -2.4
BMD L NoF 0.764 T-score -1.8
Re-scan 5th Aug 2020 after 2.5 years of pred with Calcium, Vit D, mineral supplements, good diet, regular walking exercise is now:
BMD Lumbar spine 0.82, T-score -3
BMD L hip 0.86, T-score -2
BMD L NoF 0.646, T-score -1.8
I’m no expert on interpreting DEXA results, but to me spine looks worse, hip looks marginally better/same.
As some of you will know, I resisted going onto bisphosphonates after first scan for all the well known reasons and rheumatologist agreed to wait for second scan, which (thanks to local NHS Trust), I had to pay for myself.
The spine figure worries me as I’ve had disc problems in the past through trauma and certainly don’t want a collapse/stress fracture. Seen too many of those when I was a nurse. I had a telephone consultation with the registrar on 10th August and he understands my reluctance, but really feels I should go the bisphos route now and has suggested annual infusion of Zolendronate as an alternative to AA. I’m happier with that idea than swallowing AA every week. Interestingly, the rheumatologist (private) who reported my 2nd DEXA offered up HRT (oestrogen only) as a long term alternative. I need to have a further discussion with my docs on this. So, that is part 1 of where I am and I’d be interested in reader’s thoughts on this.
Part 2 and why I’m now flat on my back.
During my rheumatology appt in February I mentioned that I was getting a lot of rib and sternum pain, pain on breathing, coughing, sneezing stretching etc making it difficult to sit up in the morning. Pain reduced as pred kicked in then increased again in evening. Reg said “probably a bit of arthritis” and didn’t seem concerned 🤦🏻♀️ Hmmmm!! Well, I’ve put up with it until the appointment on 10th August (different Reg this time) and raised it again, saying “pain was now radiating up my neck and into right shoulder,. It’s worse if I try to throw a ball for the dog”. He decides it could be a problem in my spine and says “You need a MRI of neck & shoulders. I’ll make a referral ”. “How long to wait?” I ask. “Oh shouldn’t be too long” he says, “they’re quite quick at the moment”. Hmmmm!!!!
A week later and pain is getting worse. Not a squeak from NHS re MRI. I get chasing. I’d been classed as “non-urgent routine” apparently, so bottom of the queue! I find out scans being outsourced to local private hospital. Ring them. Earliest date - 17th September, so at that point a month away! Apparently they tell me “private scans are taking even longer”!!!
Then, 6 days ago I’m brushing my hair and I feel a tug in my upper back and since then it feels like someone has stuck a knife between my shoulder blade and spine. It only stops hurting when I’m lying down. Hence madam has taken to her bed!
But wait! Grab another cup of coffee and a Gingernut or 2, there’s light at the end of the tunnel!
Friday. I’m in tears. “I can’t take much more of this, sob, sob 😢😢” I’ve tried so hard....”. Full feeling really sorry for myself!! It’s nearing the weekend and no, I’m not ringing the GP or going anywhere near A & E. Friend comes to the rescue with 2 precious Diazepam tablets left over from a dental procedure. Break them in half and I can make them last the weekend. Ice, wheat bag, paracetamol, bed, sofa. I will survive!!
Suddenly, OH announces - wait for it ......- “Oh, when’s your scan? Oh, that’s a long time to wait, you might be covered on my work health insurance for a scan. “Whaaaaat???!!!!” 😱 Deep breath time!!!! Breathe Karen, Breathe, Smile Count to 10 😊
“Really darling? That would be helpful, I can try a few other hospitals and see if I can get a scan done quicker somewhere else. Thank you.” I say through gritted teeth 😬 and reminding myself how lucky I am to have choices.
The phone calls begin from the sofa and yes, both the other local private providers can do scan in 3 or 4 days. YES!! Result!! Ah yes, BUT, I need a consultant referral and I’ve been seeing the Registrar! 😡 Consultant’s Secretary doesn’t work Fridays 😱😱
Blot our the weekend
Now Monday (yesterday) and more phone calls. Net result - I’m covered on the insurance. Consultant can see me same day at private hospital (Oh really???!!!!), appointment booked. Seen yesterday 5pm. Consultant looked absolutely drained!! (NHS Dr post COVID) Not sure he quite clocked everything that’s been going on with me, but yes I need a scan. In fact I need 2. MRI & CT. Pred upped to 10mgs just in case it helps. CT scan booked for next week & MRI I’m still working on, but should be this week (if we can get the consultant to complete the right referral form - don’t ask!🤦🏻♀️) ! I’ll let you know!!! It’s been a journey & a test!!
Conversation about Zolendronate v HRT etc deferred to when we know what the hell is going on with my back. There’s a waiting list for infusions anyway - I didn’t ask how long!.
Meanwhile, I need a cup of coffee and if you’ve made it to the end of this post I expect you will too, or something stronger! Is that allowed??? Thanks for reading and please believe me when I say, I know there are many, many people in this country in a far worse position than I am. The inequalities of our healthcare system are probably the one thing that make me more angry than any of the other socio-economic problems of our country. When I’m fit enough, I do work to try to make things better for everyone.
Oh look, is that the time? It must be lunchtime! Darling......