This road is just far too long and too many bends!!!!
I actually don’t care anymore what it is I just want to be normal and live a normal life with my children 😣
Sitting here in deep thought and this is it, I’m a human dart board.... the darts are being thrown, we are getting doubles and triples but not the blooming bulls eye
Hopefully my consultants are in training 😉
Awe Lisalou, it sounds like you're slipping down emotionally right now. My goodness, I don't blame you, love. This is all a whole lot and when you still don't *know* what you need to know after all this time, it's very clear that it could really get you down.
Give yourself a big hug from me.
Your 🐼pop xx
I have given up on " feeling normal". Sometimes we just will never be who we were before illness hits. I focus on smaller things, like the highlight of my month was realizing that my right arm has started to swing on its own while walking. It still has limited movement and feeling but it no longer lies dead at my side.
I found hoping for my life to return to as it was before was setting me up for disappointment and self judgement so now I focus on the fact that at least even on my bad days I am still here. Some others are not as lucky. I allow myself to grieve what the disease has taken from me while reminding myself of what I still have, my breath.
Hang in there. You are in the mist of grieving the loss of who you were. As you go through the steps just remember that eventually acceptance will follow and with that comes a new strength you never knew you had and you will find new wonderful joys again just in an amended way.
Xo
Beautifully wrote. I think I’ve got to the acceptance part I just need a little more medication to stop some of the inflammation. Mentally I’m alive, physically well “Tin man” is how I feel 🙄
I get up every day now with a positive mind set, a far cry from before 😊xx
What meds are you on now? I can no longer take it now while on plavix and warfarin, but flaxseed oil is proven to lower Antiphospholipid antibodies, CRP, cholesterol and thus inflammation. Maybe while waiting for the right drug ask a doctor about natural supplements if they might be helpful. Statins, although controversial, work by lowering inflamation more than cholesterol. Good luck.
Only on 200mg hydroQ at this time . I did get offered a 4 week steroid cause yesterday, but I declined. I know they work but can’t bare to put myself through 4 good weeks then come crashing back down. I did explain to the doctor I saw yesterday that one of my hardest battles was dealing with the mental ups and downs whilst using steroids. I’d rather stay where I am as it’s much easy to cope with being flat line then going up and down
Xx
I agree, Lisa, I am hoping you get on a new and improved medication regimen after all your evaluations are done. You are such a champ to be as positive as you are when things are moving like a turtle. 🐢😫
Better times ahead ..
😘k
Only yesterday I said the hydroQ was helping with my burning rashes 🙄. Today I’m covered in a rash on backs of hands and up my arms. This one is a new one!!!! Have taken photos . Swollen knees too. Next time I go I’m going to say nothing and let the photos speak for me xx
😮 Are you able to relate it to a trigger? Heat? Sun? Fatigue? You should definitely take the photos to your doctors. Can you post a photo?
Very sorry.
Xk
I have not been out as it’s been raining. My only trigger is the dreaded hormones and it’s abiut that time 🙄x
Oh no! Not another rash!
Quick question as some of your stuff overlaps with mine. Did you, by chance use latex gloves/marigolds in the last couple days? Or anything that would cover the area where you got the rash? (Even if you've used/worn this before?).
I do not have contact dermatitis and no allergy to latex, but with the UCTD, I developed Urticarial Vasculitis, which showed up as a new back of hand and up-the-arms rash. As far as I could tell it would happen a day or so after wearing marigolds to wash the car or clean the oven, etc. After full treatment *Cellcept, Montelukast, antihistamines and Hydroxy* for several months it stopped and I can wear the marigolds/latex without any problem again. Mine would tend to favour one arm/hand. So not sure if something similar is developing (the only way to find out is biopsy), but if so there would be another set of treatment and this can come through Dermatology. Have you got an upcoming appt with them? If not, maybe ask for a referral?
When I was on only Hydroxy alone at first, like you are, it was not enough to stop the rashes. I needed the Full Monty! But these rashes should help your Rheumy know you likely need a next step in meds. I was on Hydroxy alone for 5 or 6 months before anything new was introduced. You're creeping up on that time-frame, no?
How long does the rash last? Mine lasted up to 2 weeks.
🐼x
This is something I’ve never had before. It starts like little blisters, itches like mad. My hormones are in full swing which I’ve always been able to pin point as a trigger.
So annoying because by the time I get to dermatologist you can bet your bottom dollar it won’t be there 🤨 x
Lisa — you really should take photos of that rash and make notes for all your doctors, including the neurologist, about when it occurred and the itching and blisters. Any increase in other symptoms? Your dermatologist has already seen your extensive rash. He will believe you! He needs to know about the change.
😘k
Mine started like that too.. And I never had a worse itch. That's why the shingles itch isn't bothering me, actually! It is likely going to be the case the rash won't be there by Dermatology (I agree), but with the pictures, both your Rheumy and/or Dermy (whoever you see first) will likely suggest a biopsy and set it up so you can go in on the day.
You could report and send pics to your Rheumatologist now? (I know he's away, but the other one who saw you might take action?) They just have to call Dermatology and do a biopsy referral for when a rash is active. My whole process took over a year(!!) to catch the rash and biopsy it; and I missed a few major rashes inbetween, but they got it eventually.
I'm really wanting for you to be topped up meds-wise too. It really should make such a difference, but I guess the Neuro side of things needs figuring out first. Hope that's soon!
P x
I think another battle is that I’m very darked skin so my rashes never look as fierce or in your face! Although they feel horrible to me .
I’m going to email some photos over the rheumatologist and just say it straight, I can’t do this no more 🤨
X
You absolutely should send those photos to the doctor. Can you make sure it gets to Dr. d Cruz? He is the one who is considering dermatomyositis, and he will want to see the rash and the changes. These are important things.
We know how fierce the rashes are. You don’t need to fight as hard as you imagine. You have enough of a battle with your illness and getting effective treatment. 🤼♂️
🥰k
Don’t think I know what’s normal any more. 3 more appointments arrived in today’s post plus a copy of the last consultation. I don’t know why they always arrive together. They have repeated DNA and complement..
I really feel for you, it’s such a struggle with lupus.i have only recently got diagnosed,but have been struggling with random symptoms for years.
Hope you manage to enjoy the summer.
Great analogy but it’s all too familiar and so frustrating x
Gentle hug from me lady 🤗🤗🤗
I will just point out though that three treble twenties score higher than three bullseyes!! ONE HUNDRED N EIGHTY!!!
My copy of lupusuk magazine arrived today n I've been having a read..there's an article written by a young lady whose battling with lupus..n I'd like to share it with u..it's about looking at the stars..when u look at the stars u tend to see the shiniest stars first..but when u continue to look u start to see the smaller stars glittering beside them..these smaller stars r the things we achieve every day..like managing to cook a meal..or managing to do up buttons on your favourite blouse..all of the stars light up the night sky..don't ignore your small stars coz they glitter just as strongly!! That's the gist anyway!! 🤗🤗Xx
🤣🤣🤣🤣 now you can see why I couldn’t maintain my trainee accountant job 🤦♀️. Can’t rven add up a dart board!!! Thank you for pointing this out because I have just really laughed xx
Love the stars but I’m usually asleep by the time they shine. It’s beautiful here for star gazing xx
Aww you poor thing - I can relate although my children are all young adults now. How are you managing with quitting smoking? If you are still going through this then could it be adding to the darts board feeling due to nicotine withdrawal? Hope you’re getting help? Txx
I am 12 days smoke free 😎. Have noticed a huge difference in my livedo. Maybe it was the smoking causing it to be extensive.
I feel incontrol , booked a holiday next year for me and the kids to keep my focus xx
You are a complete star warrior LL - hat off to you!
Now I will have to use you as my role model for a strict calorie control diet I need to implement - starting from today 😎🌟🎩 🥴🤗
😂. I will need your help here!!! I have not stopped eating for a whole week! I’m sure it’s the not smoking but it’s not a good excuse.
I’m going to start tomorrow, which means today you can pretty much guarantee I’m going to eat all day 🤨
I think we are all capable of achieving, we are so in tune with ourselves that nothing is impossible. Although I wouldnt fancy a bike from John o grots to lands end 🤣🤣🤣🤣. Excuse me spelling
Xx
Hey we could try a purple and pink trike for 2 with bespoke seats and little LUK flags saying TT and LL?!! 🤷🏼♀️😆
Sounds perfect as long as we haven’t got to make it move 😂 x
I don’t think it would get further than a few meters with me on it. There’s the lead weight, the general wobble and also the complete lack of coordination. But what a panto spectacle it would make?!
Blessings Lisalou, You are right where your body, and mind are supposed to be in this web of symptomatic life that we all must face. Roarah has put it correctly, and very elegantly to you. Your being will ground itself with your help. It is different of each of us. Finding the tools to cope with your life can be a very daunting task. But, we are all here to support you in all the ways we can, together:)
Not knowing something is not always the answer, treat yourself as though you already have the answers. Just one day at a time. For every blink of your eyes you have is precious to you, and those who love you. Every second of your life counts. Reward yourself for making a point to write here in this hub, and listen to us rant too, LOL. The path you take has purpose, and meaning, know that you are already ahead because you awoke today, to take it on. My heart goes out to you. Keep the faith, be patient, love each day. Remember, yesterday is gone, and tomorrow has not come yet, there is only today! Embrace those little bunnies of yours, for you are blessed. I am praying for you! sending peace, blessings thestorm
Nicely put storm..good reminder for the days ahead of unknown health challenges...
LL I had mycophenolate added to my hydroxychlorquine which helped me day to day...if tolerate additional autoimmune meds, if docs can have confidence to prescribe.... Helped l me rebuild my 'stamina' so I could continue working during the day...then rest....hugs ml
❤️❤️❤️❤️❤️
Totally feel for you, I hope you get an answer in the not so distant future x
Do I give up on healthcare altogether and search for other health and care alternatives. have now lost all faith in the medical profession.
16 days into steroids and boy what a difference! This is the best I have felt for at least 3 years, probably a lot longer. 
Struggling to get a diagnosis/misdiagnosed? Bloods/tests not matching how you feel? Strange symptoms the doctors don't understand? 
Refused DLA, now do I just get let it go or do I fight? Do I have the energy for it?
A long, hot, sticky night in flares, & I don't mean down the local disco for a 70's extravaganza.
