Time for a catch up

It's been a little while since I blogged. I do look in from time to time but to be honest I don't have the energy very often to engage right now. I think over the past couple of months I've got a little depressed through health worries and lack of direction. Life is quiet, too quiet really and I know I badly need to get back into employment before I turn into a hermit. The problem is with my hysterectomy looming in a couple of weeks I'm not really in the position to get a job right now.

The results of my echocardiogram were finally given yesterday. It appears I have mitral valve regurgitation. I was advised to have checks every 2yrs just to see how it goes and not to worry. Well I don't know about you but personally I find it very hard not to worry when told my blood is travelling the wrong way in my heart! I would be interested to hear if anyone has any experience of this condition as unfortunately I've been left with Google as my only source of information and we all know how dangerous snooping in there can be. I'm not sure what has caused it but the Ra couldn't be ruled out. Who knows, maybe eventually I'll get to discuss this with my rheumatologist as it has been almost a year since I last saw him!

I'm still dieting and have lost 92lbs since January 2012 but it appears to have stalled right now and try as I might the lbs just refuse to budge. I still go to the gym and enjoy weekly spinning classes so my overall fitness is improving. I did increase my classes at the gym but found my Ra protested big time and I had a couple of flares so I've cut back and listen more to my body now. Even though the gym has qualified instructors they just don't seem to understand the nature of our illness. Also on a positive note my hairloss appears to be improving. I'm not sure if the mtx was to blame after all as the improvement seemed to coincide with a drop in my thyroxine dose in January.

I hope you are all keeping well and I'm going to catch up on your blogs over the next couple of days. It's lovely to have this site and all your support in what has been a very difficult year.

Paula x

35 Replies

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  • Just saw your blog Paula. I can understand your an xiety. My father had mitral valve problem and it was caused by rheumatic fever as a child. His hands and feet used to get very cold and he got breathless on exertion.

    Liverpool. Hospital specialise in this. I an sure one of the specialist nurses would give you advice if you are worried.

    You weight loss will be an added bonus to your heart valve problem, also the fact that you do regular exercise.

  • Thanks Carole, I've done a little reading into it but as with all internet medical information you get bombarded with scary images and worst case scenarios. The GP didn't seem concerned so I'm sure I'll just come to terms with it soon enough. He said mark my calendar for another check when I'm 46 so he's not expecting me to pop off any time soon lol x

  • I know how it feels when things get too still - I've been feeling that way myself. Some of my zeal for fighting RA has worn off & it seems to have won the last few rounds - feel as if I'm licking my wounds sometimes .... biding my time.

    I can imagine that the hysterectomy looms large - I know it takes a while to recover but I bet you'll be very relieved to get that over with. You've got a lot on your plate but seem to have so much going for you as well .... I've read some of your blogs & gather you've really worked hard to maximise your fitness - that's got to pay off sooner or later.

    I went to a strenuous yoga class before I knew what was wrong with me - the instructor seemed so clued up but in retrospect she should not have urged me to hold some of the positions that put strain on my joints. I'm thinking of going to Tai Chi now - I know the instructor so can make sure she understands that there are some moves I won't be doing!

    I'm sorry to hear you've been having such a difficult time of it. It is gradually dawning on me that I might have gone round the twist were it not for this site ...... Hope that everything goes well for you.

    Luce x

  • Thank you Luce, I think only people with RA can truly understand how we feel. I throw all my energy into my health and fitness so it's just hit particularly hard right now as I feel I've lost control. You're right though, the hysterectomy is having a big impact on me and I'll be relieved to get it over and done with. My gym also has yoga classes but I decided that my wobbly wrists would have no chance of coping. I did try pilates but unfortunately that had a lot of hand and wrist use too. Like you I've been thinking of trying Tai Chi so if you give it a go let me know what you think of it. x

  • I got asked to leave tai chi ! I couldn't stand long enough so sat on a chair at the back, but I spoiled her chi apparently!! Oh well, I did enjoy it though xx

  • Paula as ever you amaze me with your stoicism Paula. I've really missed you as well so glad your back out of hermitudw (if hat doesn't exist as a word it does now!).

    Firstly I am really appalled that you haven't seen your rheumy again yet. I know you see a rheumy nurse but you are far too soon into this RA business to be left to yearly appointments - especially as you are on MTX and should have dosage tweaks - and with the hysterectomy looming and now your heart problem it should be more frequent still. Have you tried phoning your consultant and explaining everything or have you just felt too depressed lately?

    I feel like taking you in hand like an indignant big sister Paula - honestly?! The weight will just do what it does and as long as you don't gain (like I've been doing a wee bit) and keep up with the gym as much as you can I really wouldn't worry. That is pot calling the kettle black because I too get frustrated and find exercise a bit harder just now but as long as you are doing it to the best of your abilities and eating as healthily as you can then that is all you can do

    A hysterectomy is a big operation - my sis in law has just had one and been describing how long its taken her to get over (she's had it as part of a biopsy for something else so they've taken a lot away with her womb). I really wish you had more support with your RA drugs to tide you over and hope discussions can be had with your consultant about addressing how your RA is before or after it - ASAP.

    Don't know zilch about your heart problem but I'm quite sure you could find out more by using Carole's help and getting good control over your RA - this would probably make everything click else into place more including feelings of depression. Stay around and get advice and support again please - you are a valuable member of this forum and you need support and cyber hugs with everything you've got on just now. Love Tilda xxx

  • Tilda you always talk such sense, I wish you were my indignant big sister too as the one I've got couldn't give e rats a*** what happens to me. I did phone the clinic and tried fight my corner and said it was important that I see the consultant but unfortunately it got me nowhere. In the past I had so much more fight but I'm afraid I've had the stuffing knocked out of me right now and don't have the energy. I'm hopeful that recovery will be quick from the surgery as I'm having the laparoscopic procedure and keeping my cervix. The RA is grumbling a lot right now and I have background discomfort most of the time but it's probably due to the stress more than anything else. I said to my hubby that I'd love to crack open a bottle of something very strong and get absolutely hammered but unfortunately that is out of the question with mtx. I've been reading a little about your break in medication but not caught up fully yet so hope all is ok with you. Your support is really appreciated. Thank you x

  • Hey just relieved that I haven't totally alienated you with my bossy ways! I understand about the fight going out but this is seriously important. How do they justify only seeing you once a year at this stage - sure it goes against all the guidelines. If you ever feel really badly in need of speaking to someone then I found that the NRAS helpline are great and might suggest ways in which you could access your rheumy more often?

    Loads love and thoughts. Happy to be your big RA sis and if i lived closer by i'd make the phone calls on your behalf. Tilda xx

  • Ps sorry SO inarticulate - just woken up in studio having fallen asleep on a pile of felt I was cutting and using my mobile for long comments not good!! Xx

  • Afternoon paula,god your good to have lost that much weight and well done you for it. My mere 15lbs is a long way from your weight loss,but i am getting there. My ra is all over the show the moment. i Have good days when i want to do everything and then i pay for it the next day. So i understand what your saying and i am sending you some hugs.xxx

  • Sylvi 15lbs is an amazing achievement, well done!! I see that you're awaiting anti tnf and hope you get approval soon as I'd love to see you get the relief that you deserve. The thing that makes me so happy about this change in lifestyle is that my husband and children all felt inspired to look after themselves too so now the whole family are fitness freaks and no longer overweight. They make me so proud :-)

  • That is a good result for you all and well done to you all.xxx

  • Paula, you have a lot on , good luck with the big op, you are quite youNg for this op I feel? x

    know nothing about mitRAL VALVE im afraid, have they definately said blood is flowing the wrong way? best source of info is nhs choices. x

  • Hi Alison, I'm 46 and unfortunately I've had problems for years so hysterectomy is the only solution left open to me. I don't need my womb for babies any more and frankly I'll be glad to be rid of it. I'll be keeping my ovaries so won't be having a menopause right away..hopefully. The mitral valve should basically only let blood flow one way but for whatever reason it is faulty and allows the blood to flow back out the wrong way into the upper chamber of the heart. I'm hoping this won't give me any problems as I'm keeping fit and working out regularly. I think getting told about it just came at the wrong time and I'll get used to it soon x

  • Oops.....I'm not 46 at all I'm 44 lol

  • Paula,i joke that i had my hysterectomy for my fortieth birthday.It was three weeks before my birthday,but the killer is on my birthday i had a haemroidrectomy(sorry bad spelling) i always knew i was a pain in the a""e.xxx

  • gosh sylvi you were very young x

  • Yes i was summer,but from the january until the august i was in constant pain every month. The reason i was in so much pain was that i legions from scar tissue from having grace by caesarin. It was an emergancy so they whipped her out and tidied me up.xxx

  • That's the worst 40th birthday present ever!!! lol

  • Probally,but its one i won't forget in a hurry and i have had plenty of laughs over it since.xxx

  • Hi Paula, read your blog & can understand you must feel up against a wall with so much going on. Wish I had a magic wand to ease the pain & worry for you & all who are part of this extended family. sending you love & hugs. Alison x

  • Thank you Alison x

  • Hi Paula you sound like your having a hard time. Can only wish you well and hope your op is successful. I have had hysterectomy really you no need to worry. You will need at least twelve week off to recuperate. So its best not to bother with job hunting !!! Sending you best wishes xx

  • Thanks for that, it always helps to hear positive outcomes from people who have been through it. I have a friend who had one done last year and she says it's the best thing she's done and feels so much healthier and has bags of energy. She even said her hair is thicker and healthier as her body isn't being drained each month. You're right though, job hunting would be a waste of time right now. Thank God for Kindle :-) x

  • Your welcome and yes it was the best thing ever for me

    X

  • Sorry gotta rush, but hysterectomy best thing that happened to me xxxx

  • Thanks :-)

  • Hi Paula,

    rather late to this, have only just logged on to find your blog. Sorry to hear you've been having quite a few additional medical problems. Obviously it's natural to be worried, especially where the heart's concerned. But hopefully your medical team will be keeping a close watch . Great news about your fitness regime and weight loss, something you should be be really proud of. I'm afraid my weight is slowly creeeping up. Although I'm making a real effort to keep fit and active I just seem to have a really increased appetite and the Easter chocs left around hasn't helped. I've been going to spinning classes for about 8 months and have found them really good. I've also found yoga great - I discovered something called chair yoga which is good as most of the positions have been adapted for seating, so no strain on wrists. Our class has people with a whole range of conditions and problems but we all muddle through somehow. Maybe there's something similar where you are? I've certainly found its helped with the stiffness.

    Very best wishes to you for your op and wishing you a speedy recovery.

    Caroline x

  • I'll have to look into the yoga Caroline but I'm a member of a local health club and I don't think they have anything like you describe, it does sound fab though. No Easter eggs left here as I managed to pig mine down on Easter Sunday :-) I may be on a diet but I've still got to enjoy my treats occasionally. My appetite has increased too and I think it's more than likely due to the increase in exercise. Spinning is great though and not as hard as I expected it to be. x

  • Hi Paula so pleased to see u back on here :)) , sorry you are not feeling so good at the mo , I'm sure it's because u have the op ahead of u but my mum had that op years ago and felt a different person after, it knocked years off of her so try not too worry. Really pleased your thyroid meds have been sorted and calmed your hair right downs as I know how upset u were about it and what an inspiration more weight loss skinny minny , I need to take a leaf ( or leaves) rather out of your book , you should be proud of yourself :))) Claire xxx

  • Thanks Claire, I'm sure you're right about the pre op worry making me feel worse. When my friend had hers she only got about 2 days notice and I'm wishing the same had happened to me. Hopefully like your Mum I'll have a few years knocked off too :-) The loss of hair has had quite an impact on my self esteem so I'm hoping with all my heart that it grows back now. At first it was like I had thin whispy hair and an underlying fuzzy short cut. The fuzziness is looking less noticeable now it's getting longer so I'm hoping to go for a new cut soon. Thanks so much for your message of support x

  • I was 26 when I had my hysterectomy and am 51 next week. I reckon I have saved a fortune in tampax etc over the years! Scarey as this surgery is, I am certain you will reap the benefits once you have recovered. Imagine it as having a plumber clearing a really nasty blockage and letting everything settle back down into good working order! I hope (and am sure) you will feel better afterwards and can resume 'spinning for England'! Virge

  • Thanks for the message Virge, images of surgeon with plunger in hand now!!

    Paula x

  • Blimey, I'm not surprised you're feeling low that's a huge amount to deal with in a short time. Hope all goes well with the op, and it helps you get back the spring in your step and gives you an energy boost once you've recovered. And then you can really enjoy that incredible weight loss - that's brilliant, I've managed about 30lbs so 92lbs is outstanding. Hope all goes smoothly, Pollyx

  • Thanks Polly and well done you on losing an amazing 30lbs!!

    Paula x

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