Well that didn’t go according to plan but….

Hi folks I figured after my last post I should probably update, so here goes. I went into my apt feeling nervous, my BP was up a lot for me when the nurse checked it, she did it twice and wrote down the first no as it was a little lower, not really surprising that it shot up more after making me feel like my arm was about to be squeezed off! Someone needs to come up with a better plan for doing BP!

First off my rheumy was concerned that I’d had to have another course of prednislone and a fairly high one, I’d asked for what I’d had before as it had worked really well and calmed things down, which it did again this time and I’m still not having any major issues with the costochondritis since finishing it back in the summer. It’s my last resort med and I’ve told him that more than once, I don’t ask for it lightly & will be even less inclined to ask for it again given that I had 5 days where I felt like death after tapering off, first time I’ve ever had steroid withdrawal which indicates to me that my adrenals struggled this time to re-regulate. He checked my joints blah blah same ole process as usual and then I bought up the weight issue.

He  said that he didn’t believe that mtx caused weight gain, other than the fact that most people on it are in pain and less mobile, yea that makes sense to me too I guess. He also said he would like me to stay on it, I don’t think he wants to rock the boat with a med that has me at ‘ok’. Would I like better than ‘ok’, better than feeling like I’ve climbed a mountain after just doing the stairs and a shower, yea! Doesn’t look like I’m getting it though, ok is good enough it seems.

But on the plus side he totally understands how the weight is making me feel and he suggested an eating plan I’ve never really considered trying. The 5:2 plan or intermittent fasting. So after my apt I came home, had a good cry and then pulled myself together and gathered all the info I could find on the 5:2 including a support group for help and support when it gets tough.

I started it the very next day, so this week is my 4th week doing it. It’s going really well, I’m finding it easy, even the fasting days. I can still eat but have to stay under or around 500 cals for that 36 hour period. Today is a fast day, my 5th one so far & I’m finding it easy as I don’t have to count calories on the 5 non fasting days. I do eat a very healthy diet anyway but it is making me mindful of not reaching for food because I just fancy something and it’s making me think about things like, do I really need butter if I’m having cheese spread or whatever in my sandwich/ryvitas etc. I’ve switched out butter in my jacket spuds for half fat creme fresh etc, measuring mayo with salad instead of just squeezing it on.

I measured myself about a week or so ago and I’d already lost 1.5 inches from 3 different areas. I can’t weigh at home as I chucked out my ‘sad step’ but plan to weigh monthly when I see my nurse for my blood draw. I plan to go more on what fits me nicely to see how I’m doing but at the risk of tempting fate I do feel like my body is changing. I know it’ll be a slow steady thing but that’s the best way right!?! I just can’t believe how easy it is and how normally you can eat, bar those 2 days a week, that’s perfectly doable long term which is the plan.

And that is pretty much where I am right now. Pretty stiff today so staying in the warm & planning to do some serious reading this afternoon. Later peeps! xxx

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Connecting the dots…..

I feel like crying. For 22 years I’ve taken Methotrexate, it’s a chemo drug, an immune-suppressant, it makes me feel like shite most weeks for a whole day afterwards, but it has undoubtedly helped my body as far as the RD goes, so I’ve listened to my doctors & done as I’m told & sucked up the side effects as the benefits outweigh it right? I can hardly complain when I people I love have had to go through full on chemo treatments.

I’ve just now made the connection with my weight struggles. After 22 bloody years!!! I was doing some research into another drug, Arava (Leflunamide), as I’ve been thinking about asking my rheumy to let me try it instead of the mtx, mostly because I’m just sick of it making me feel so crap but also because of how different and how well I felt on the prednislone recently, it made me realise that my ‘normal’ isn’t as good as my doctors & even myself thought I was doing. There is still a lot of inflammation running round in there all the time.

So I researched, I knew that Arava can have the side effect of weight loss so that’s why I was looking at it, but I didn’t realise that mtx can have the opposite effect, weight gain. How in the hell did I miss that?? It can’t be listed in the meds because I’m a firm believer in reading up before you shove a toxic drug into your body, any drug. 22  years, seriously??!!

When I read that I thought back, I was always slim, I mean super slim, size 8-10 slim. I wore lovely dresses and practically lived in jeans and vest tops and never had to worry about how I looked, or covering bits up. Even after I had Lorraine, my first child the weight came back off easily. Then when I fell pregnant with Grant, I was diagnosed with RD and the barrage of meds & tests and hospital visits started but I managed to hold off of starting mtx until I’d finished breastfeeding him, that was at about 9.5 months old. Then slowly over time I started to have weight issues. Up, down, diets and all that crap. Bigger clothes, smaller clothes. Then I had Nina and it took us 23 months to fall for her, again because of the mtx. I came off the stuff 6 full months before we tried as it can cause serious birth defects then there was the 23 of trying cos it knocked my fertility out. Then 9 of pregnancy and again 9.5 of feeding. I had steroid jabs in the ass while I fed them both to temper the pain and inflammation.

I lost 3 stone after Nina was born, 3 stone just fell off me and I never had any idea why. Until just now today! So I’m sat here feeling both happy, like I want to burst into tears and terrified in case my rheumy won’t agree to me coming off this stuff and trying something else. I think he will because he’s a good listener, he’s never ever dismissed my point of view and we usually make decisions together about my treatment. There’s no guarantee Arava would work for me, or even if I could tolerate it, but boy I’m willing to give it a damn go. I just hope I get that chance and then we’ll see, maybe the slim me can come back out to play.

 

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The Art of NOT looking sick & my biggest obsession (after Norman Reedus!)

I opened the door to my post-lady this morning, about 10.am & still wrapped in my towel yet fully made up with a red lip & my hair half done! I signed for my parcel & went back upstairs wondering what she thought of me still being in a towel at 10am! It was only a fleeting thought as I really don’t much care as this is my everyday routine & it works well for me. I got up at 7.45 & was downstairs by 10.15. What I hear you cry!?! Well while I can do my make-up much more quickly than a full two hours, it takes that long for my meds to kick in & the stiffness to bugger off, or there abouts. I can no longer work so I don’t have to rush to be anywhere so I have the gift of time to be able to take my time getting ready.

Most days I get up at either 7 or 7.30 as I’m not a bed lounger. I shower every morning as the hot water warms my joints & wakes me up, 2 for 1 bargain! Then my next stop is the kitchen to make coffee (God’s nectar), and get my daily meds. I take up a flask of coffee as well as a mug (Daryl Dixon of course), so that I only have one trip down and back up again.

Then enter You Tube videos on my phone while I indulge in my big obsession. Skincare & make-up. I’m not going anywhere so I hear you ask why bother with make-up? Well the answer is two fold, one because I look like death without it, tired and ill, chronic illness will eventually take it’s toll on your under-eyes. Two because if I don’t bother and I just lounge the day away without making the effort I will feel worse. I’ll become the lady in the dressing gown who doesn’t bother because she’s got nowhere to be. It’s an old black and white movie that I don’t wish to become the new star of. If I make the effort everyday it makes me feel better, just knowing I don’t look so tired makes me feel better, knowing I’ve made the effort to look after my skin and make up my face makes me feel better, more like the old me, the healthy me!! Besides I get to play with make-up! Magic in tiny tubes and pots that can change your face like magic.

When I make the effort and I open the door to someone or I go out and about, I can fool people into thinking that I’m feeling better than I do & that makes me feel better. This is why so often people who aren’t as healthy as they wish they were get told ‘You’re looking well’ or ‘You can’t be that ill you look good’. It helps us feel more human, more ‘normal’. At the end of the day it gets washed off & the reality stares us back in the face, but for those hours that you have your ‘healthy face’ painted on it feels so damn good.

 

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And the flip side to pred……

I felt bloody fantastic on the prednislone as I wrote about before, but after 5 days off of it my body is rebelling & my adrenals are struggling to regulate. I spoke to the Dr as I was worried as I’ve never had this kind of withdrawal before but was pretty sure that’s what it is, and I’ve taken them several times over the years with no problems, he believes I’m right and it’s steroid withdrawal. I’ve had headaches every day, I only ever get maybe one hormonal headache a month. Nausea, visual disturbances (silent migraines), lightheaded and dizzy feeling and low blood sugar plus some aching and sore tender to touch skin. What fun!! I’ve gone from feeling great to crap in one foul swoop! Anyway he said that as I’m five days in to withdrawal already the best thing to do is just ride it out, unless it gets worse of course then they want me in.

Why oh why is it that every drug we have to take has such horrible side effects? You take one thing and end up taking 3 more to negate the side effects or you end up feeling crap while your body adjusts. I just hope he’s right and this is over and back to normal next week as I’ve read of people having the symptoms for weeks after. Also this would make me nervous about taking them again although after reading up I think next time I’d taper even more slowly than I did.

While I’m whinging I also have a super stiff neck since yesterday!! Cheers RD. I think today will be best spent on the sofa watching movies with Nina. We’ve done Coyote Ugly and now it’s time for Despicable Me!! Oh we went to the cinema yesterday and saw The BFG, brilliant film so go see if it if you’ve not yet.

I’ll be on the couch if anyone needs me!!!

 

 

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The current love of my life.

I am in love. I know this affair is going to be a short lived one but I am relishing every single moment, the way I feel, what I’m able to get away with & having the real deep inside me back again, if only for a short time. This feeling can’t last forever though I wish with all my heart it could, it’s dangerous long term & will have to come to an end. It’s intense but my love can only be short lived.

Don’t panic Mark! My lover is prednislone, steroids. That double edged sword that can give me back my life for a  few weeks, a month or so if I’m very lucky. After a fall & a nasty flare, and then another flare from defying my body and doing some decorating, I reached the end of my rope especially with my costochondritis (inflamed ribcage & sternum) and decided to call the Dr for a short burst of relief. My doctors are fabulous, they know it’s my last ditch resort med wise and they know that I know it’s not a permanent solution, too many long term, nasty side effects. I’m already eating for England since it kicked in!

But the benefits are wonderful. I’ve not had this little pain in two years, since my last big pred burst, I can visibly see the difference in my joints, even though I don’t swell much as a rule. This course has just proven to me how much inflammation is running round my body all the time, despite the great lab results. I can feel the difference when doing my yoga practice, 40 minutes of pure enjoyment instead of pushing myself to do 20, the stiffness is so much less, my chest is settled & my breathing is normal again for the first time in so long. And get this, I’ve not fallen asleep during the day or evening (often it’s both) since it kicked in!!

I’m already on tapering down, so I guess another week or so and I’ll be off it again. I am not looking forward to the inevitable creeping back in of pain and stiffness plus the fatigue that is my ‘normal’ now. I am hoping that the effects will last chest wise as they did last time for a good few months after, we’ll have to wait and see. I am however so very grateful for the relief, it’s blissful & the only times I’ve experienced it in the last 24 years is while either pregnant or on pred! Not a full time option by any means! It also means I can give my Dr Dishy a really good picture next visit of just how my normal levels are in direct comparison.

Someone seriously needs to sort this drug out! Make a version with no side effects! I’d happily live on it! Come on big pharma, you can do it, please……………..

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Why am I so stupid??

Morning peeps, why won’t I listen to my body. I know I should, I know I’ve been in two full on flares since the very end of May when I fell and smashed my knees, yet this morning, knowing full well I was already in a flare from painting I pushed myself so I could bake with Nina. We had a lot of fun and really enjoyed it so it was totally worth the way I feel right now, right??!

 

Yes it was. I refuse to miss out on life’s little adventures while I have the opportunity. I will just deal with feeling like I do for the rest of the day happy in the knowledge that Nina just enjoyed her slice of cake that we made, that I showed her how to fill and decorate a cake, that we made scones together & I taught her some tips that she will use in future. If we all just sat on the sofa and let life pass us by we’d all die of boredom before we died of RD, I’m sure of that. So now I will lie here and do e-mail and then watch some tv with Nina happy in the knowledge that we had the most fun of mornings together and tomorrow I will rest. 

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We went shopping & the expected flare.

On Thursday hubby & I went shopping to find some bedside lamps and a new light shade. We went to town first & had some lunch, had a look in a couple of home shops but didn’t find what we wanted so drove up to Dunelm Mill for a wander round. I’d seen some lamps online there while we ate lunch so we picked those up plus a shade. We walked round the end just browsing and spotted lamps to exactly match the shade we’d picked up & they were on 50% off so grabbed the last two. Two lamps for a tenner, bargain, how lucky was that! We picked up some other little bits and had a good wander round before leaving and meeting up with young son. We had a look in the carpet shop as we still need to get the kitchen flooring & then drove across to Sainsburys for a few bits for dinner and a much deserved coffee. Everything was put in place when we got home & I snapped some pictures for this blog, then I collapsed on the sofa!

Yesterday (Friday), the inevitable flare hit. Too much painting & shopping for my body so this weekend I will rest as much as I can and next week I will have to be sensible in what I choose to do. This always happens if I overdo & Wednesday when I painted I knew I was pushing much too hard but my room looks great & I’m so chuffed I managed to do some of it myself. Thanks again to my amazing Daddy for all his help. I forget he’s 78 but he’s still fitter than me!! Anyway here are some photos of the room & all we have to buy now are new curtains and pole and new bedding. Oh & the rug was made by my parents when I was born, all hand weaved & 100% wool, it’s super cosy to put my feet on in the mornings. In the meantime you’ll find me chilling on the sofa.

 

 

 

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