A Spring Update

[Blyth1]

Hello all, I have had a busy few weeks, going between Gp, ILD consultant and Rheumatologist. Not forgetting the practice nurse who has been stabbing me every 2 weeks with various vaccines .

My referral to a rheumatologist came fairly quickly, seen mid March and started on Hydrochlorquine . Was told this would take 6 -12 weeks to take effect so I continue to eat pain killers like smarties. The pain is , at times, just overwhelming. I am awaiting steroid injections to my shoulders. Hopefully soon 🤞

My ILD team told me to stay at 15 mg Prednisone for the time being until I get some pain relief. Then they will look to add in Nifedipine into my mix.

I am being fairly useless at staying off oxygen for 8 hours during the day. My sats plummet to 68. - 72 when I walk even a short distance so I put on the oxygen, even for a few minutes until I am back to 88-90. For me this works!

I had a dietician come out to see me as I have gone off eating . She was a breath of fresh air. Told to graze eat through the day, anything I fancied but try to make sure protein figured at least twice.

Have to say I don’t know how anyone who is living alone deals with this - getting washed and dressed has become a two person job. I am putting my husband up for a sainthood 🤣

The sun is shining, the daffodils look great in their pots and I intend to enjoy with a cuppa in the garden.

Take care all, stay safe and well. X

[sassy59]

Hi, it seems as if you’re being well supported by a good medical team so I hope things improve for you soon. Great to have a wonderful husband by your side too. I care for my hubby Pete who has COPD, sarcoidosis, heart disease, chronic back issues and stomach problems. It’s hard work yet I’m happy to care for him.

You take care xxxx

[leo60]

I have to say, you sound remarkably cheerful in spite of it all 😊

It does sound as though you are being looked after well and I hope you find an improvement soon. I find the sunshine helps no end!!

Laurie xx

[Blyth1 in reply to leo60]

Not so sure about being cheerful Laurie, lots of sobbing and crying goes on, especially as I get up, showered and dressed 😒 I then sit in front of the mirror, slap on the face cream and give myself a good talking to! As my northern mother always used to say “ come on lass the day is waiting for you!”Xx

[leo60 in reply to Blyth1]

I can imagine. People ask me why I am so cheerful all the time, and I have to say that being sad just makes me more miserable.

It is hard and I am sorry if I sounded glib. xx 🌼🌻🌼

[Alberta56]

I'm thankful your medical team seem so intent on finding relief for you and that you have such a wonderful husband. I hope the pain relief will kick in soon. Isn't it good to have sunshine and daffodils- they make the world seem brighter. xxx

[Swizzy]

I have a great problem with having enough energy to eat after struggling to cook and I was in despair at being nagged to eat more, take those vile supplements and add cream etc. Then my new dietitian said 'forget all that'. She told me to buy frozen mini meals. Extra protein from M&S. Wiltshire Farm Foods and Oakhouse Farm Foods. It is such a relief not to have to struggle to cook and I have put on 2 pounds.

[Ern007]

Hi - I have bad OA and spine problems- But I have been spared RA -One reason is looking at your meds, I prefer mine even with side effects. All the Pred - i am looked after for pain - Morphine and Paracetamol in day, Paracetamol mixed with Morphine is Good, Dihydrocodeine for the night. Have gotGabapentin for nerve pain so really I have got the best.

To being cared for - You have a good hussband really helps when you have someone.Anne (my Wife) does lots for me even sorting my medicines when and how much to take,

With my other ailments also, I am lucky to have an "Anne"

Keep enjoying your cuppa with the blooms - We do the same.

Good luck and hope youget all your treatment sorted soon. I have had the shoulderinjection . never felt it.

[Izb1]

It sounds like you are being well looked after and fingers crossed the meds work well for you. You seem to have a good team all pulling together and think this really helps. I love my rheumy doctor, she listens to me and always tries to find a solution, referring me to different departments which helps as I don't have to wait as long. I have tried different meds but found that Methotrexate works well for me and has kept me stable for a number of years. I do have the odd flare up and the steroid injection in my butt last for months so am lucky with that. If only the osteoarthritis could be fixed so well. Thank goodness you have a hubby that helps to look after you. I live alone and find that when the fatigue is bad and a real effort to get myself fed, I thank God that I had the foresight to cook extra to put in the freezer. The sunshine certainly helps to lift our mood so enjoy your cuppa in the garden this week x

[watergazer]

You have a good medical team looking after you and a great hubby by the sounds of it. Take care. Enjoy the better weather. Lovely to enjoy a cuppa looking at your flowers in the garden xx