Hi my Rheumy mates, not been on site for a while so I thought I'd tell you all why.
Had a lovely holiday in July despite being diagnosed with a protruding disc before I went, RA kept itself under control too so that was even better.
Thank you for the personal messages, nice to know I was missed.
Anyway,
Have had to put off next Rituximab treatment for a while as white cells are still a little low (recent blogg) and so to is my creatinine level (kidney function) this has been fluctuating for quite some time, apparently! RA still behaving itself to a certain extent so that's good.
Prolactin levels (recent blogg) still playing up, waiting to go back to see consultant and probably have another brain scan, I'll have no brain left!! not got much as it is! lol!!
Have also has a referral to a Gynecologist because of my periods being all over the place. GP thinks it may be connected to Prolactin levels ( and so do I) but he needs to be sure. Had appointment last week and now have to go in for a Hysteroscopy,biopsy and a d&c.
Still waiting on appointment for epidural and facet joint injections, always think of Tricia on this one and what she's going through. I do hope they come through before Gyne one as I know you can get into some awkward positions on that operating table!!
In my last blogg I told you I was treated for a kidney infection. Well, I had a "funny turn" which led the GP to believe that it was a kidney infection I've since has another. I get pain in the kidney area which is very sudden and usually at night when I get up for the loo I then go dizzy and light headed feel very sick and bail out of sweat I can feel myself dropping to the floor. Two or three times know my son as come to my rescue and helped me back to bed.So I'm now being sent for a ultrasound on my kidney's which is on the 24th August.
Have had to put back op on left foot as I feel others are more important at the moment and foot isn't so bad that I can't cope. Have to see surgeon again in November.
I think that's about it guys, I'm desperately trying to stay positive and strong and not to let things get me down but it's so difficult at times.Just the other day I was thinking I'm 47 this year and I've spent 27 of those years in and out of hospital, 17 of them for RA and the other 10 for another problem.
I know it's not just me we all suffer in one way or another, but don't you think that having RA should be enough for anyone to cope with. Life just doesn't seem fair at times does it?
I feel better know I've shared it with you all only my hubby knows about most of this as I feel I can't talk to other members of the family. Don't get me wrong certain ones have always been supportive and never judgmental it's just how I feel. Sometimes I feel people think "what's wrong with her now!" like I'm making it up for attention, you can see that uncaring look in their eyes.
I know people on here won't judge me has most of us have lots of things to cope with not just RA so I feel happier sharing it all with you.
Oh Mandy, you are having a really pants time aren't you
When I move north nearly 20 yrs ago, my medical notes took ages to arrive. I joked to my new gp that they were probably in an articulated lorry stuck somewhere on the A1. The next time I saw him (I was being treated for cancer when I moved) he said that they'd arrived and he'd taken them home to read through them - 'oh dear' I said. 'Well' he replied 'when you get a new patient with notes this extensive they're either a major pain in the backside or they've been horribly unlucky - and you're definitely in the latter category'. I knew then that I'd got the right gp and practice. He's been unfailingly kind and compassionate and really on the ball with prompt and appropriate referrals - and was genuinely upset when I developed RA on top of everything else (had kidney disease since I was a child).
Basically I got a 'duff body' - but the genetic mother load all landed on me and my 4 siblings are all in robust health and I'm glad that they've been spared. I believe that we're only given challenges that we can deal with - and we don't know what we're capable of until we're tested.
Sounds like you got one of those 'duff' bodies too It's hard when lots of bits all decide to activate at the same time, it leaves you battered and wondering what bit is going to 'fall off' next!
People who are judgemental or incapable of empathy are not worth the energy that it takes to be upset or angry with them! We're conserving our energy to enjoy those things or people that make our lives joyous - I mentally press a 'Delete' button when that negativity comes my way. I've had an acquaintance say 'oh, you're always ill' when I declined an invitation - she's been deleted, binned and removed from my social network.
Take good care of yourself - and look for joy in the small things, a smile, a waggy puppy, a glorious sun set...whatever - it works
Cece x
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Thank you Cece for such a kind and supportive reply. It always makes me feel better when I chat on here as I certainly now I'm not alone. I'm so glad your children are of good health we always worry about them. My son is 16 and he is too I'm happy to say.
Yes, being with my dog at home she always makes me smile and such a comfort to me.
Thank again hope your recovery is going well.
Take care
Mandy xx
poor mandy.. you are going through it
• in reply to
Keeping strong and positive though that's the key!
Hi Mand,(and also Cece). what a time you are having. And so many tests you will have to go through. Do hope all will work out for you soon. I've only had Ra for 3 1/2 years and that's bad enough. Can't imagine what living with it for 27 years must be like. Yes I agree, get rid of the so called friends who can't or won't empathise and see the problems you are having. On one of the other blogs I mentioned a so called friend who couldn't understand how I got my DLA allowance as "you are not really ill" and "anyway my aunt was much worse and she didn't get it". Needless to say, she is also off the radar as well,particularly when she has been invited round for meals at Xmas, New Year and never reciprocates or asks, when I sink into my recliner with exhaustion, how I am feeling and can she do anything? My other friends who came at NY, ordered me into my chair, cleared the table, washed up the things which could not go into the dishwasher, made the coffee, brought me a glass of champers and would not let me move! They are the sort of good friends you need, not the other sort which only cause you upset and exhaustion. I notice they are always ready to offload their problems onto you but can't be bothered the other way round!
Take care, look after yourself and look for the Perseids shower of meteorites in the night sky over the next few days. worth seeing. They peek on the 13th August so am praying for clear skies. Keep smiling. Love LavendarLady x
Thank you Lavendarlady your kind words and support mean a lot to me.
I will look out on the 13th, I'll tell my son too as he loves that sort of thing.
take care
mand xx
I think some people do just land duff bodies - I know I have (chronic eczema and alopecia since childhood) and just as one thing stops another sets in. But maybe our minds are stronger and more interesting for all the physical suffering? Poor you though.
I did just want to say that my periods were all over the place prior to the onset of my menopause which started when I was 46 - now over and done with. All the eczema that had dogged me all my life cleared up with this big hormonal shift and my hair is now quite lustrous I'm told and not a pink itchy patch in sight for the first time ever!!
But then the blooming joint stuff all kicked in. My sisters are both deaf but seem to have missed out on all the other problems that have afflicted me and I'm very pleased about this because they have enough to cope with.
When you have something visible like eczema and bald patches people assume you are neurotic, bundle of anxieties etc including my immediate family. But my aunt just told me that she always thought I was the strong, wise one of the kids and was just unlucky being almost albino fair skinned and physically frail. It was so nice to be told this after years of battling with other people's preconceptions.
But then you only have to look at Stephen Hawkins and those who participate in the Para Olympics - and at my amazing sisters to know this to be true!?
Take care Mands and bare possible onset of menopause in mind when you speak to gynae if you haven't already ruled this out or had the blood test. Tilda x
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Thank you Tilda I'll take note of your advice on the menopause you may have a point!
Lovely kind words yet again, certainly makes me feel more positive.
take care
mand xx
Hello Mandy. Nice to hear from you again, but not nice to hear you are having such god awful time. You really are inspirational, because you have been so strong and positive since you joined our little community, and have had so much to put up with.
Like t'others have, negativity from others can go take a hike. I have learnt so much since my diagnosis, and my confidence in myself has come on in leaps and bounds through all this blogging and supportive "chat" on her. You have been no small part of that.
I know what you mean about that withering look from people, both family and strangers alike! Even though I have only been diagnosed since October last year I have had problems, going back to when I was 6 or 7 when the orthopaedic surgeon thought I had been lain in a draft and got a crick in my neck. My neck has always played me up since, and I am convinced the more I talk to people the more I realise I have a duff body too! Snap! Bad sprains, strains and pulled tendons and ligaments, plantar faciitis, carpel tunnel syndrome, Rotator Cuff Impingement, Osteoarthritis, tennis elbow, housemaids knee, sciatica, fibrositis, bursitis, and tenosynovitis uncle tom cobbley and all! I know I have not had RA to ravage my body for all that time, but it seems such a co-incidence that other RAers I speak to have had the same sort of problems.
So bugger the rest of them, you keep strong and positive and I know you have a great hubby looking out for you. Oh and a rather handsome looking GSD too! Take care me duck.
Julie xxx
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Thanks Julie, you always cheer me up and thanks for the kind words too. You have your fair share of things to cope with too, we have to be strong we have little choice. Sink or swim and I'm certainly not going to sink! not just yet anyway.
Take care
mand xx
disclaimer..... think you are a bit young for meno pause.. but its not impossible.. I had dreadful problems gynae wise I had same procedure as you are about too earlier this year!!, my symptons normalised in my case after stopping methotrexate which also caused bad stomach/ bowel problems, the procedure, biopsy was all clear.. my symptons sorted themselves out on stopping my methotrexate.. I ddid say to the the gynae specialist.. that on the methotrexate side effect leaflet.. irregular bleeding is listed as one of the side effects!! he said he hadnt come across this!! , I think you that pehaps your prolactin levels could also have an affect?.. but as I dont know much about this subject can comment.
I missed your balanced and positive input when you were off line.
Wishing you good luck with gynae prodedure and kidney scan
Alison x
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Thank you Alison your opinion always appreciated, I will mention mtx to the Gynae consultant when I see her again didn't realise that was one of the side effects. Glad you hysteroscopy turned out all ok and the results were all good.
Take care
Mand xx
• in reply to
Of course you are more of an expert on medical matters than me Alison - and definitely know more about the side effects of medicines and RA than me - but surely saying Mands is probably too young for menopause is like saying people are too young for RA, or even more so OA?. I have had mine and I met someone the other day who had hers at the age of 35. It may not be the average age but it still happens to many and is therefore is a possibility that shouldn't be ruled out?
Hi Alison, I started the menopause at 42 after my mother died. GP put me onto HRT and 5 years later I had breast cancer! So came off HRT pretty quickly. Cancer treatments followed and then pronounced clear 5 years later. At the 10 year we opened the saved bottle of veuve cliquot champagne. LavendarLady x
I put a comment more from personal experience.. I had gynae problems possibly similar to Mandy, or possibly not.. you are correct menopause can occur at any age but the average age is 50.. this is statistical fact..
No one is too young for RA it can occur in childhood as Im sure you know.. there are no set ages.. but statistical/y most people develop it or diagnosed between 30 -40 these are statistical pieces if information no more . no less!
I wasnt ruling it out .. more trying to be reassuring/ supportive to Mandy form personal experience
ALISON
Yes sorry Alison I didn't mean to sound chippy. Actually I'm feeling a bit chippy about always seeming to be "unusual" and "unlikely" and not the average statistically etc for obvious reasons just now but no excuse to show it I know From my own experience I thought it important that Mands consider this possibility of menopause as well re periods being all over the place as she describes. It seems to me that the medical profession often get stuck on one trail and find it hard to see a bigger picture so just thought it worth a mention that's all. Sorry.
Tilda
• in reply to
It's ok, your both giving me advice from your own personal and knowledgeable experiences which I very much appreciate.
That's what the site is all about giving out our own opinion and personal experience with RA and other related conditions.
If we all shared the same opinion then there would be no need for the site.
Thank's Tilda
Take care
mand xx
I have a technical background. statistics are used in lots of medical/ research work as a base line.Drs etc need something as a comparison point
. I originally studied chemistry and worked in research doing projects I was made redundant and at that point married so retrained and moved sideways/. career change.. but there is logic.. some of the work subcontract was for pharmaceutical companies.. I was made redundant late 90s so retrained/ studied at a mature age.
All options as you say should always be looked at and your right!, people focus in on one point.. sometimes the clue is somewhere in the wider picture.. this is were if you have a good gp they come in. because they know the whole you.. Trust me at hopitals different consultants dont often talk.!. each . perceived condition is treated as a seperate entity and the person is not seen as whole !.
It is wrong and I dont condone it.. but that is the way hospitals seem to work.
Often consultants only look at part of your notes because they dont know you and in all fairness how can a person who sees you once or maybe twice a year now you as person?? .
My personal remit at work is to offer as much help/ support/ advice/ counselling to patients as possible..
On here I try to help too. but email. blogs are clumsy, Im no natural typist or author so sometimes the tone can come across wrong or can be mis read.
I am a visual face to face person.. email type stuff is not my forte.
• in reply to
Hi Alison, it's very true and I've found that through my own experiences that different consultants don't talk to each other about patients. Sometimes illnesses/problems/diseases can be linked in some way they could be very easily sorted just by talking to each other. When I went to see the Gynae last week I never thought for one minute she we want me in, but on thinking abut it all she is doing is her part of her job with her patient! job done for her. Then hopefully when all the tests come back clear from her she will have no more to do and it will be in the hands of the Endocrine team to deal with it and back to sorting out the high prolactin levels which is the probable cause in the first place!
Don't worry yourself your trying to help me by giving your advice and opinion, which I appreciate.
Take care
mand xx
• in reply to
I know what you mean about blogs, typing face to face etc. I've had to become very good at communicating by type rather than face to face because my sisters are both profoundly deaf so cannot use the phone and they live too far away for me to see them very often. I miss phone calls - rarely get them these days, apart from my GP or a son wanting money or lifts! Now both parents are gone it tends to just be email or text for me even with my close friends.
I'm a visual person so this is pretty frustrating on one hand- but I'm also fearful of the phone now because it's presented me with the worst kind of news over the years so I still panic when I hear it ring!
I have many friends from scientific backgrounds and as a research-led artist myself I often relate to the ones doing microbiology or pharmacy or forensics more than I relate to those who are arty-farty! It is great for everyone having you here on HU though Alison - I would never have taken than Amitriptyline if you hadn't given me some reassurance for example!
And yes Mands we all just want to help you in any way we can.
Thank you Sylvia, hope your feeling better too. Not yet caught up on reading all the Bloggs but I know you've had a difficult time of late, falling off scooter etc.
Thanks, i've been asleep most of this morning, not sure yet when i'm going to go back to bed, it won't be long. I'm up one day down the next. Theres no rhyme or reason to how i'm feeling. Yesterday i had my hair done and i felt a lot brighter, today i ache, but i'm not as bad as you my love, i don't wish what we're going through on anyone.
Take care.
love Sylvia. xx
Take care Mand. and good luck with it all.. hope you get sorted soon x
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