Link

I have started a new blog: At Liberty in London… one that is less about illness (almost not mentioned) and more just about things I like and enjoy doing:  Good healthy homemade food, traveling, good reads and walking around the wonderful city I live in… I thought I should share those thoughts as well as my ‘sick person’ thoughts… because i am not just a ‘sick person’ I have interests and skills and well… you get the picture.

I may need to return to this blog occasionally to vent frustrations and to ask for help…but I keep this blog relatively anonymous (not on facebook, only two friends know about it etc etc) So I can have an outlet for my illness related anxiety! So thanks to the couple of people who have commented and helped me out over the past year. I appreciate knowing there are others with ideas for me.

But please… be my guest and have a gander at my new Happy blog At Liberty in London

P.S. The Humira seems to be working incredibly well…I can’t beleive how flexible and strong I can be when the pain is all gone. I am going back to work part time in a few weeks!

What’s in a name?

I felt possessed to share my thoughts today. Although most people don’t care and have their own woes to worry about and although I am usually quite upbeat and positive about my life with PSA… I’m extremely tired of my disease being misrepresented by the name ARTHRITIS! it is a Chronic Degenerative Autoimmune Disease that I take extremely strong chemotheraphy drugs to try to control… I did not get it because I’m lazy, overweight, unhealthy or any other reason that can be blamed on my own actions, and it can’t be cured by my being more health conscious, by meditating or by taking supplements… it will get worse as I get older and it will never go away no matter what medications and treatments they come out with… and that’s just reality!

 I am sorry to vent but I am so tired of being treated like I have an ache or pain or like I have osteoarthritis like your parents or grandparents! I have been immobile and in bed for most of my first year of marriage…and the reason you haven’t seen me sick is because NO ONE aside from my parents, husband  and in-laws have seen me actually sick! I will continue to struggle to hold down a steady job and social life for the rest of my life. I AM lucky in so many ways … so many! I know that!… BUT I am sick and tired of being treated like I am NOT a sick person! I am! It’s chronic so sometimes I appear to be fine… but I will always have flare ups where I can’t walk or move and am in extreme pain! I will never be able to predict when this is going to happen, for how long it will last or how painful it will be. My immune system does not discuss with me when and how it will attack my body to make sure it fits my schedule!  Every life decision I make is based around the unpredictability of my illness and the longterm side effects of permanently taking chemo drugs! And I don’t need you to tell me the drugs arn’t working or that you have a better idea about how to fix me… I’ve had this disease since I was 14! I’m not an idiot and it is so important to me to BE strong and healthy I have researched and tried everything! I mean it! Don’t try to one-up me with a new idea! I’ve tried it all and in spite of that my disease keeps progressing as I get older! So stop judging me and start being happy you can use your legs whenever you want to. Just for one itsy bitsy moment think of one decision you’ve been mulling over…getting a new car, having a baby, making a career change, asking for a raise, booking a vacation… now add in the symptoms of having an unpredictable autoimmune disease for the rest of your life that could attack your joints, inner organs, skin and eyes at any moment and make you unable to use your body at all, for an unknown amount of time! It IS serious! I just wish my  past employers, friends and family would accept this and stop treating me like they don’t get it after years of seeing me go through it!

I AM happy in spite of it all and I do believe I can have a good life if I work hard every day to not get flare ups, (And what a balancing act it is… life is normally tough but imagine factoring this into everything!)…so … I am sorry to complain… I am well aware of the great injustices in this world aside from my own experience… My job was to teach underprivileged inner-city youth after all… I just want my friends and family to know it is not NOTHING! and it IS as serious as some other degenerative diseases in spite of the name ARTHRITIS! Please if you know someone with RA or PSA or even Fibro! Please do not treat them like they should just ‘get over it’… We don’t want sympathy… but when you ask why I haven’t found a job yet and I answer you for the millionth time that I am waiting to see how my new meds work out… please control the rolling of your eyes and stop the urge to relate it to your grandma’s aches or to that pain you have from that old football injury… Although my disease sounds complex and is much easier to just relate to ARTHRITIS… it is not nor has it ever been arthritis…

My Christmas Present from the NHS

I started Humira this week….for free! After an excruciatingly tough year battling with the National Health Service to get some kind of help, I have finally been given the best gift possible: NHS payed for Biologics treatment…I can now start dreaming of getting my life, career, relationships and mobility back and it won’t cost me £20,000 per year!

If you try sometimes, you just might find, you get what you need.

Thank you NHS

Brain Fog (Cognitive Dysfunction) Caused by RA Medicines

Reblogged from Living with Rheumatoid Arthritis:

Several years ago I wrote a post about brain fog caused by the biochemical processes of rheumatoid arthritis. The inflammatory chemicals, including cytokines, produced during an autoimmune response can impact nervous system functioning and cause brain fog - or more accurately, cognitive dysfunction. The best way to describe this for someone who doesn’t have RA is to think about how their brain feels while they have a bad case of influenza.

Read more… 669 more words

Brain Fog: So that's what happened to my memory!

Elimination Diet: What do we eliminate?

As this year my flares have taken over my life, (I can’t work and have been housebound for at least half of this year), I have finally had the good sense and time to take eating seriously. I have been a healthy eater for years now (lots of green veg, fish, little to no gluten, fruit, green tea, homemade everything) but now I want to take this eating business seriously.

I have been doing an elimination diet for about a month, and yes it IS painfully boring, but not forever, so I can deal. The problem is when I started I was in a state of strong disease activity and I still am, so it is difficult to notice any changes or food side effects.

I’ve done loads of research on the various foods out there. I have mostly separated the ‘Good for PsA’ from the ‘Bad for PsA’, but I am not so sure about certain beans, pulses and grains. 

Going gluten free means I rely heavily on quinoa, tofu, nuts, corn, rice, lentils and beans. All gluten free but all have popped up on various internet health sources as bad for PsA!

For example I use chickpeas in almost every dish from homemade falafel to curry protein base to salad topper and have recently read they are a possible trigger. Ahhhh! I get the obvious ones:

No sugar, no nightshades, no wheat, no pig, now cow, no dairy, no processed foods, no deep fried or high temp cooked foods,

But what about the other things: Beans, tofu, Lentils, Corn, Rice, Nuts, Quinoa? Has anyone experienced flare symptoms from these foods?

Getting rid of tomatoes was a hard one… but I did it… but how can I say goodbye to all of the above!

Join this online support group for PsA!

I’ve just joined this support group and already feel like ‘where have you been all my life!’.

I have haphazardly crossed paths with a lovely compassionate young rheumy doctor at the Royal Free Hospital who has deemed my disease activity completely unacceptable especially in relation to my age…(we happened to be the same age). She has gotten me in touch with the head of Rheumatology who after seeing my knees and hearing my story thinks I should start Biologics immediately and who has forwarded on his request for this to my specialist… First time I’ve felt listened to in the UK by a doctor ever. It is such a brilliant feeling to know I’ve just had some bad luck and have been put in touch with the wrong people…it’s not all bad!

I think a change is in the winds for me… and I am beginning to feel like I may be allowed to plan my ‘real’ life as a possibility again!

I’ve been searching this forum for info about Biologics to see how my new life will work, and have turned up some positive reviews which is heartening.

Living with Psoriatic Arthritis (PsA) – Online Support Group – We are patients living with Psoriatic Arthritis, here for your support..

All I want for Christmas is a wig?!?!?!

So I am in a flare, and housebound once again… but… as shallow as it may be… I am much more concerned about the swathes of hair falling from my scalp! The song ‘You’re so Vain’ is stuck on repeat on my mental playlist.

What everyone warned has finally happened… I really thought I was in the clear from the hair loss side effect… but no…last week I started noticing more hairs than usual on my felt winter coat… then when I brushed, the hair brush seemed to have quite a few more hairs on it too… by midweek my hair was falling out in bunches of 10-15 strands a few times a day…everytime I would get up there would be hairs left behind marking my presence there… this has continued for a few days and well, I am not sure what to think… will I be bald by Christmas?

My hair falling out oddly coincides with me going off my medication. I had a poor result in my most recent liver toxicity test and was told to go off all my meds for two weeks until I could be retested. I have done so and have simultaneously started an ultra healthy anti-inflammation/elimination diet. Sooo, am very curious to know if any of these changes could have triggered the hair loss.

Does anyone have any advice for someone who is experiencing hairloss due to DMARD medication? Specifically Methotrexate-Leflunomide combo… I was on just MTX for ages and had hair thinning but not to this extent and I’ve now been on the combo for 5 months.

I have a haircut booked and have even started looking at Wigs! Tyring to take this as it comes… but for a woman… loosing your hair… well… lets just say… I have a big square german skull that fortunately with hair on it looks pretty good…but bald…. aiyee… don’t think it will suit me as well as  it did Sinead O’Connor .

Oh well making the best of it… going to reinvent myself as a dark chocolate brunette!

*sidenote: Week two on my strict veg,fruit,fish diet is going well…will try adding a food in next week… going to start with eggs or chicken.