I MISS MY FLOWERS!!

[vic78]

hi everyone, this is kinda my first post,i did write a post about 4 years ago when i first got diagnosed with secondary raynauds,But i do read all posts on here and on the Lupus site and it has givin me more info then any of the experts ever have.

The weather has changed!!OMG and its hit me like a ton of bricks,I feel like i cant go through another winter,its gonna be a tough road ahead .No one understands!! Anyway to the point.I'm 38 and i was a Florist for 20 years ,i loved it, when i left school i didnt know what i wanted to do with my life until i go a job working on a flower stall that was it something i really wanted to learn more and really enjoyed.I done a floristry corse and got a job in a flower workshop in a garden centre it was fab!!But thinking back it was killing me,long hours on your feet,i was always sooo cold and tired.Its funny when i think back, i had a reason for everything; My legs are really painful and feel like ton weights and my feet hurt my toes are sore and my knees and ankles are on fire(its just standing up all day)I feel so tired all the time(im a busy mum of 2 boys and working really hard),my hands hurt and they look odd sometimes and go dead the' re stiff and numb and i keep getting chilblains,my left hand would go all pins and needles(its just working with cold flowers)my back hurts and some dayss i couldnt even do my shoe laces up(just the 2 pregnancys done my back in there must be a weekess there)I keep getting chest infections and really bad pain deep inside when i breath(maybe abit run down)one time i couldnt lift my arms to dry my hair(i was puzzled but its fine i'll wear it curly)Im sorry but i sweat contantly from the minute i get up(very embarrising i wont mention this to anyone)My brain is fuzzy i forget things and im always talking to myself reminding myslelf of what im doing or what i need to as i forget everything.(its ok i can be abit crazy!!)Abit shocked when i washed my hair and loads of it in the plug hole!! didnt have an answer for that one( but everyone loses abit of hair when they wash it,dont they?)also IBS i suffer with constipation,pain in my stomach bloating.Then just before christmas 2012, something took me down i was so ill i thought it was flu i had a week off work i still wasnt any better had another 2 weeks off,i really wanted to get back to work cause it was such a busy time so went back even though i didnt feel good this went on and on.my friends at work whre saying i didnt look very well and i had lost alot of weight i was always slim anyway i didnt have the weight to lose!!they kept telling me to go to gp but i thought what do i say to him, i dont feel well wont cut it.Then my ring finger and little finger swelled up and a couple of toes the pain was something else,so went to gp he said raynauds stright away and refered me to rheumatology and the blood test comfirmed it.My family and friends thought it best i didnt work as a florist anymore,i had to agree i was still very unwell.IRheumy puy me on nifedipine and losatan that helped ,all blood tests came back ok apart from ana was positive and abnormal capillaroscopy.low vit d.I still think there is more going on with me but know one knows what!!

Was seeing rheumy every 3 months back then and kept complaining about my knees and ankles,but theres no inflamation in my bloods she says,Ithought she was going to discharge me but thanks to you guys on here i took photos of my knees when they where burning up they go purple/red with pinky orange blotches through and swollen,she then put me on hydroxy,it did take a while to kick in but it helped with my knees and nothing else.only things i have had come back in my bloods are high cholesterol and low neutrophil count but gp isnt bothered.I found blood test results that i kept from december 2013 when i went to a and e with sudden pain all dowm my left side in my chest CRP was high WBC was high MCHC was high MONO ABS andNEUTRO ABS was high FIBRINOGEN was high after a very strong course of antibiotics was ok after a while but something keeps taking me down, i feel like ive never gone back to normal never got my energy levels back.rheumy did send me to gastroenterology for weight loss and stomach issues and wanted me to have a colonoscopy,bloods he done where fine so no further investigation.My latest bloods ESR CRP TFT is normal ENA/RhF/CCP negitive HIV/HBV/HCV negitive ANA positive(1:320 large speckled pattern) C3 1.15 C4 0.14.Idont know what this means it doesnt say positive or negitive or weather its high or low,any info on this would help!!

It took 2 years to feel well enough to consider getting back to work.So 4 years later im still no better off and i miss my old life badly,i dont feel like me!! sorry to put this on you guys im just feeling very sorry for myself at the mo.I miss my flowers.Funny thing is im workin in a bakery now with hot ovens on all day!! I had to reduce my days there aswell cause i was struggling so i only do 3 days ,but ive got no passion there and i wonder is my illness now always going to get in the way of living.

thanks for reading,xxx

[zenabb]

WE always have ups and downs and they occur in cycles; it gets somewhat better for a while to return later. It seems to me that you should work with flowers somehow. How about a commercial nursery or your own business with a partner, or teaching florestry. Don't lose heart. Use the internet. Best wishes.

[vic78 in reply to zenabb]

thanks zenabb for your reply,im holding on to that thought for dear life!! and i will get there,finding it hard to adjust at the moment,thank you.I forgot with all the rambling on to ask my question,has anyone else had to change job or things you really enjoyed or had to adjust life when your ill with this,how did you cope?

[Hidden in reply to vic78]

I agree with Zenabb - there are always ways around things -but life slips by too fast to not at least spend it trying to do the things we love,

Here is my tale in case it helps. 6 years ago I was struck by polyarthritis after decades of ill health from childhood to raising three sons. All the problems you describe apart from weight loss - I just used to gain all the time as I used food as my comfort blanket. Also it turned out that I was hypothyroid.

I'm an artist and I painted with oils for a living. My eczema would make this very difficult and if I wore gloves my hands would sweat so much that the eczema would get even worse. So finally I gave up painting and turned to stitching and drawing instead. Then RA struck my hands and I could barely move my fingers or wrists for pain - kept going and ignored as best I could. Then I was diagnosed (ESR and CRP both always very high but all autoantibodies normal range) with seronegative RA. I was put on three different drugs, Sulfasalazine, Methotrexate and Hydroxy.

After a while my toes started to freeze and would be bright white if I took my shoes and socks off. Then my fingers joined in. The rheumatologist just shrugged so I asked for a second opinion as by this time my arms and legs were alive with pins and needles.

Finally, still with pins and needles everywhere including my face and IBS-c - I have been rediagnosed with primary Sjogrens Syndrome - although my ANA blood (also 1:320) blood shows pattern of scleroderma. But my eczema had gone away so I give up stitching and return to painting once more. After a while my hands are back to itching madly and GP has diagnosed pompholyx - a kind of eczema. The whole of each palm has turned to thick leather and itches like crazy and the betnovate does nothing to help. So do I return to painting or take up stitch again? Neither because my hands are too sore and I have lost sensation from painful neuropathy and Raynauds. Also I'm off all meds for a few years, apart from Losartan, having had severe allergic reactions to all including Nifedipine and Hydroxy.

So what will I do now to satisfy my creative urge? Why I'll write a (bestseller!?) book of course! I can use voice recognition on days when hands are bad. And if I get put back on new meds for my SjS soon as I hope - my hands might get well enough again for me to do the illustrations. My eyes are struggling with focus too just now so writing with voice recognition seems sensible for a while.

You have to find a way to do the work you love - there's always a way but it just may not be the way you did it before.

[hhardwick]

Although we are all verydifferent on our journeys we are very similar too. This colder weatheris reminding me of what's to come and I'm not looking forward to it! The last few weeks I have felt dreadful. I cry when I get up the pain is so severe. But we have to keep trying. Because as soon as we stop we've had it in guess. God bless all my fellow sufferers. Keep warm. They say rest but when I do I seize up. Exhausted all the time. Xxxx