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Update from Hughie!!

Hello there all....

Well, I had a dreadful time in court, going over my ordeal of June 2007 with my previous employers, all for the judges to decide that they didn't have enough time to make a decision and would let us know within 28 days by post!!!! I was stunned that this could happen, but at least all the trauma is gone, I just need to be patient a little while longer, to get my justice. I got a few apologies throughout proceedings, which did mean a lot, so even if I don't get compensated, I have at least been heard and maybe they will consider how they treat people in their business going forward. It was interesting to hear that there are no other disabled people working for them any more!! They need to recruit!!

Well, I am astonishing myself with the energy that I seem to have at the moment, my medication is very well balanced and I am managing to really work hard on my Kleeneze business with some great results!! People do buy from catalogues, especially at this time of year. Many people are already buying for Christmas to spread the cost. Whatever is said about the credit crunch, people still want to spoil themselves with bits and pieces, many of the items we sell are every day, essential stuff, but people are "treating" themselves too, to the more luxurious items. I am working the business during school hours - I do some admin and follow up calls when the kids are home and some deliveries to customers when Chris gets home, but I am really getting into it and have already got 2 people in my team!!! I did have another chap, but he packed it in shortly after starting as he decided it was too much like hard work!! Some people have no energy!!! I dismissed Kleeneze for at least 6 months before I took on the challenge though, it isn't mentally demanding, many of the duties are repetitive, but time consuming...Me hobbling about on my crutch and with my little trolley of catalogues takes me 45 min's to deliver 50 catalogues, healthy people do 200 in an hour!! I just keep going at my pace though and I am getting some great customers who I love chatting to...

I hit a bit of a brick wall when I got caught out in the rain delivering yesterday though!! The cold and the wet seemed to get into my bones and I was shattered, shivering and achy all evening and most of today....I was back out in the sunshine by 2pm today delivering another 125 catalogues though!!

I am doing some advertising on line to get more people into my business and to show them the opportunity, the more people I have all doing a little bit, the bigger and better the business will be!!

I am reading a lot of positive attitude literature at the moment, stuff on MLM and direct sales, but also about life coaching and the power of positive attraction. I wasn't sure to start with, but the more your hear (I listen to CDs in the car too!) and read, the more it makes sense really. It is better than being bloody miserable anyway, however you look at it!!!! Michael Heppell is my favourite at the moment, he did a presentation at the Kleeneze Christmas Showcase in September - all about "Being Brilliant" you really need to change your whole way of thinking, talking and even posture to get there...I get updates from his website too which are very inspirational, if you have had a bad day...

Living with any chronic health problem is shitty, no matter how it affects you. It just isn't fair. It would only be fair if EVERYONE had it!! But I have done lots of soul searching and thinking about the better things in my life and on balance, I don't do so bad really. I am still here, I can get around, I am motivated to do things and I am in control of my medication which is controlling my condition, so I am in a good place...I urge anyone who isn't in control, to get that control as soon as you can. I immediately started to take control when I got my confirmed diagnosis and treatment plan. The feelings of limbo before made me feel very sorry for myself and without direction. I know now how to deal with my symptoms and I know my limitations and live within them. Don't get me wrong, I still have very bad days, but generally I know where I am going, how I am going and how much longer than everyone else it is going to take me, but that is fine, because I will get there in the end - probably knackered, sweaty and not looking my best, but I will be there and won't miss out on anything!!

Take care my lovelies and try to get control!!

Much love

Wend x x x x x x

Disability Discrimination

Hi there!

Well, I did promise that I would try to blog every Sunday, so here I am again....not feeling my best for the last few days - trepidation, resurrection of hurt feelings all coming back from my terrible time during the Summer last year when I was forced to resign due to disability discrimination and constructive dismissal....

I began getting ill during July 2007 - we now know, after much diagnostics, researching, numerous visits to various medics, gathering information from the Internet and finding the Hughes Syndrome Foundation, that I have Hughes Syndrome - well, undifferentiated Connective Tissue Disease - symptoms of Lupus, Sjorgrens and Hughes Syndromes, although bloods are negative, the symptoms are severe and debilitating on a daily basis. Medics suggest I don't work full time and have said that there is treatment but no cure for my condition.

My employers accommodated me working from home part of my working week, they also eventually agreed to me further reducing my hours from 30 down to 23 over 4 days, 50%of these working from home. As I needed to attend fewer medical appointments and I adjusted to my condition, medication and treatments, my performance at work improved in the 3 months immediately following my reduction in hours. I was able to take more rest breaks and found that my productivity improved as I paced myself better. The medics were still disagreeing about what my diagnosis was at the time, although one thing was for sure, I had and am always going to have degenerative disc disease as well as whatever else was causing my other symptoms. My symptoms were there, no matter what it was called, even if it was in my head (which it wasn't!!). The symptoms were there, no matter what it was that I had....The medics were saying that a treatment plan would take time to improve how I felt and that there were no promises that I would get better and be fit enough to work back at my usual hours and location. I wanted to be better enough to do this, I also wanted to be better enough to play football in the park, but reality was that it probably wasn't going to happen. Wanting something to happen and what can actually be achieved is something quite different....don't we all WANT to win the lottery?? what is the reality though??? Getting someone to get better to order is only going to make them worse?? I was treated like a burden, not as an asset to the business who had worked through thick and thin for 15 years, making the business hundreds of thousands of pounds over the years.

On a Friday 13th, I was cornered in a room and it was explained that it was not possible for me to work from home and do reduced hours any more (even though my performance was 2nd highest in a team of 8 people all working full time hours) then they would have to seriously consider my position within the company and may look at dismissal on the grounds of incapability!!! A grievance process followed and they did withdraw this, but wanted to constantly monitor me returning as soon as possible to 4 days in the office. Not wanting to be under this pressure to get better from a condition that is incurable, I resigned, under duress and was left heart broken and floundering in a world that I found completely callous to my circumstances. I did not choose to be ill or disabled or in pain, yet I was being held responsible for not being well enough to work. I was still being productive and making the company money, however politically it was not the "norm" and hence not something that they wanted to support me on...

I will never be employed again and be in the hands of another person's judgement of what I am capable or incapable of doing. They are even now saying that they didn't know I was disabled - my back injury (1st operation was 3 months prior to commencing this employment back in 1993) causes me sufficient problems to be in receipt of Disability Living Allowance, so surely under the Disability at Work Act (where you are disabled for being incontinent??!!) I AM disabled, have been since 1993 and still am, will always be. Never mind the horrendous pain, fatigue and depression that is caused by Hughes Syndrome on top of the back problems!!

So I am to be cross examined tomorrow until Wednesday on my version of events of 15 months ago, so that a Judge can award me compensation for the hurt and loss of earnings and career/lifestyle that I have suffered....I have to justify my position of how I feel and how ill I am, so that my ex-employers can be proved to be money grabbing and heartless in their approach to me.

I am not looking forward to the whole situation and proceedings, it has to be done though if justice is to be served... we shall see eh??

Much love to all.....

Wend x x x x

Summer to Remember!

Hello all!!

Again my apologies for not posting for a while...busy summer getting my life back together, whatever the challenges!!

Job front - well, I tried to continue on in recruitment, got made redundant, the bottom has fallen out of recruitment consultancy, with over £3million unemployed again, who in their right mind is going to spend £2k to recruit someone, when all they have to do is place a free ad and wade through the response for nowt??!! I am sure that all will come back to them again in time, but quite a long time...not for me any more..16 years was my lot!
Telesales from home was fine, for a very short time, until I did the call lists too quickly and they ran out of customers for me to call!!! No good when childcare had already been booked and paid for in advance!! So?? what to do - I need to earn a good income, work from home as I am not well enough to do a normal 9-5 job, work around the kids as well, trying to avoid childcare after school costs - £14.60 a day!!!
I dismissed this opportunity back in May when I was first job seeking....Kleeneze - running and building my own business - retailing products via catalogue drops and also recruiting, training and mentoring a team to do the same as me...I use crutches to walk around - I get tired easily, I am in pain quite a lot....give it a go Wend and see how we can get around my "issues". Well, I learned that there are quite a few disabled people already in Kleeneze who are doing well...I read up on how they do things - trolleys to hold your catalogues, pacing yourself - delivering to 100 houses a day takes me 2 hours, it would take a healthy person about 45 minutes - but hey?? who's in a rush?? Introducing the opportunity to other people - I can do that!! I love to talk, all I have to do is pass on the opportunity DVD and tell them how I am doing, I don't have to sell any more!!! The catalogue items sell themselves, the opportunity sells itself, I just enjoy doing what I want, how I want (following a successful system) and when I want. I have no child care. I collect catalogues on a Monday that I have delivered the previous Friday and Saturday. Tuesday and Wednesday I deliver more catalogues, Thursday and Friday I collect them back up. I do some fliering and put shop cards in windows, I hand out business cards and have a website where I attract people into the business. I do as much as I want to do every day. I don't have childcare costs, I take my kids to school every day and collect them too (they love this!!). I have even offered to pick up another mum's son to reduce her childcare costs...I feel in charge of my own destiny at the moment. My Hughes symptoms are controlled, I have to take medication and I have to take lots of rest breaks and make sure that I eat sensibly. The extra exercise and fresh air that I am getting is doing me good! I may even lose some of the weight that I have gained in the last 2 years (fingers crossed).
When you have a condition like Hughes, you have to live with it, rather than against it...Hughes is not going away..I thought that I would get a cure after diagnosis - not the case, I got "management" after diagnosis, the best it is going to get..so after the disappointment of finding out that I am not going to get better...you have to do something that gives you back your power and challenges you on a daily basis...I feel mentally strong and I am confident that I can really make my life work now successfully. I aim to increase my earnings significantly and reasonably quickly, I am on my way to recruiting 2 into my team - it is called the "Let's Do It Now" team - because that is what we have to do - Do It Now - tomorrow may be too late!!! No-one else is going to do it for you. I am grateful every day for the rest of my health, my husband, children, home and abilities. I really do try not to moan about the things I want to change or that I am not happy about, because I think that dwelling on negative things, brings more negative things to you..I try..it is not easy every day..but every day I try..

This is not an advert for you all to set up a Kleeneze business - but if you are interested, see my website www.letsdoitnow.co.uk!!! It is however letting you know that although having Hughes Syndrome is many things - painful, depressing, debilitating, scary, unfair, sad and many many other things... it is not the end of your life and can be the beginning. Once you learn to live with it and not against it. If I had a choice of having Hughes or not, I would not have it, obviously, but I am grateful that having Hughes lead me to becoming self employed, finally spending more time with my family and making me happier and more content (and in time richer!!).

I thank you all for reading and again promise to post every week (probably Sundays).

Much love

Wend x x x x

Depression for the chronically ill...

Hello there!

I was just emailing a friend who I haven't seen for a while and we have agreed to get together next week as her kids and my kids are off school. The kids can play and we can natter over coffee!! I haven't seen her for a while because she has been so down...I understand this, being chronically ill with something like Hughes is bound to have a negative impact on your mood. However, I also think that Hughes as a condition brings about depression as it affects that part of the brain with gunky blood flow...I can be very up and down with mood swings...

Treatment for depression is medication or CBT (cognitive behavioural therapy). I have had both and personally find the medication route works better for me.. I am sure that CBT works for people who are maybe getting over a trauma, but people who have a long term chronic complaint that ain't going away, need constant assistance to alter the chemical balance in their brains - this is my opinion only and what works best for me..

I have gone through many emotional stages of having this condition. Firstly there was the long road to discovery that I had a recognised condition...I doubted my symptoms, others doubted my symptoms, I had to deal with and get used to living with pain, I had the grief of losing the old Wendy who would dance on tables, I had the guilt of not being able to look after my own children, I had the rejection of being threatened with dismissal from work, I had to cope with hideous discrimination, lack of thought and hurtful comments. I was a wreck of self loathing for a while, I also went through a phase of feeling very sorry for myself. I was angry, sad, neglected, tired and lonely, all at different times and at different degrees. These are the symptoms of chronic depression. I would cry at the slightest emotional stress or strain of every day living, to the extend of being tearful a lot of the time and not being able to function around other people. I was quick tempered and prone to acts of violence, snappy, irritable and unreasonable. My expectation of how other people should behave changed, I was resentful of others who had their health and who could do the things that I couldn't. I started to become bitter and selfish. I really thought that I would have to live with these symptoms as they were part of having Hughes..until I got my medication right. I am not saying that it works 100% of the time, I still have my days, when the world is a tough and unfriendly place! but on the whole I have my depression in check and I am able to put things in perspective most of the time and make the most of what I have. I have also learned to live with Hughes, rather than existing because of it. I know my limitations now and I try to live within them, if I don't I get pay back time!! Usually in the form of 3/4 days of feeling absolutely awful!! Sometimes I push myself so that I can enjoy a special occasion or outing and plan for the fall out later.

It is sometimes a case of just keeping on keeping on going.... Sometimes you do need to get in your hole and think through your thoughts and not disturb the rest of the world, other times, you need to have a damn good shout at the world for giving you the misfortune of having this illness, other times, you need to just get on with it, cry in the shower, but keep taking the medication and do what you can...

Much love
Thanks for reading
Wend x x x x

Medications for Hughes and Lupus

Hello there folks!!

I have been a bit busy with my direct marketing business this week - Kleeneze, I am doing all the ground work and getting things all prepared - I can't walk the streets delivering catalogues, so I am devising more cunning plans to get the catalogues in front of people without walking miles!! I may even sell the jewellery that Kleeneze do - Cabouchon, on a party plan basis - this would be like history repeating itself!! My Mum sold the jewellery that my Dad made, they called it "Seer Jewellery", my maiden name spelt backwards. My Mum really did well with selling stuff, my Dad trained to pierce ears and when my Mum was doing one of the party's, my Mum would egg the girls on to get their ears pierced and then ring my Dad and he would go along and do that too!! They were ahead of their time really, quite inspirational really, my Mum did all sorts of things to have her own money, it was really important to her! Anyway...that is what I am doing, trying to earn some money somehow...I can't do a "normal" job because of having Hughes, so I am having to be creative..

I take a lot of medication every day to keep me from being bed-ridden. I take pain killers for my degenerative disc condition as well as the other aches and pains I get with having Hughes and Lupus-like symptoms, I take tramadol and paracetamol. I take an anti-inflammatory for my degenerative disc condition, plus the arthritis type of swelling I get around my joints, I take Diclofenac (Voltarol). I take my soluble Aspirin 75mg every day without fail to stop my blood from being so sticky. I take Plaquenil - Hydrochloroquinine - antimalarials every day to help with the lupus-like symptoms of aches, pains and fatigue. Since starting on this drug, my headaches have improved and I am generally less achy. I also take an anti-depressant every evening, to help me sleep and help with the anxiety of having a long term degenerative condition. I had a bout of depression in 2002 after a particularly nasty divorce. A lot of things came out from my past during some counselling I received at that point and I have had to take anti-depressants on and off since getting ill in 2007. Being ill on a long term basis is a lot to deal with emotionally. I believe that depression is part of Hughes/APS as well though, I think our sludgy blood does affect our emotions and the parts of our brains that control happiness. I am able to have up to 3 steroid injections a year which boost me, I had my last one in May down at the Lupus Centre and I am doing quite well on it actually. I must say that the increase in Plaquenil and the steroid jab have made June and July much better months for me. I took Gabappentin for a while, but it really increased my appetite and I have put on weight that I just can't lose again! Gabappentin works on your brain to alleviate nerve pain - it is sometimes given to people who get seizures or who are epileptic. If the nerve pain does get too much I use it, but come off it as soon as I can again...you do have to come off it gradually though.

Being ill on a long term basis, with little chance of improving to a much better degree is like a form of bereavement. I miss the old Wendy, the Wendy that would dance on tables, laugh, run, joke, get drunk, flirt, do outrageous things....ok, some of these things you have to give up with age, but when you don't have a choice to not do them any more, that hurts. I grieve for the "old Wendy" who would dash everywhere, think nothing of driving 3 hours and then go out til 4am dancing and drinking..The thought of a full on evening out, scares me, I get very het up that I will spoil things for others, be a party pooper or embarrass myself or my family. I do try to still attend things, but it is difficult for me to host any events any more and it is too much to ask my husband to do it, he is not that type and he has enough to do...I do miss throwing a party and being the centre of attention for the right reason. I hate being the centre of attention for the wrong reason - being asked what's wrong? are you alright??? I know that people are curious and care, but I hate talking about being ill, I am ill all the time, so I want to talk about something else!!!

Well, I had better sign off for now, I have stuff to do, hubbie is cleaning cars and mowing grass, it is a lovely day, but I can't sit in it or I will burn and then feel awful...

Take care and thanks for reading.
Much love
Wendy x x x x

What hurts today??

Hello there!

I am not actually that bad today, a bit achy from being out and about with Caitlan yesterday, but not bad, for me!

My ankles are swollen, they swell every day, the doctor thinks it is the strain on my kidneys from the medication I take every day. I have numbness in my fingers, which is annoying as I am having to type every word of this about 5 times each because my fingers aren't going where I think they are! I have a lot of pain in my mid section today, which is usual, pains around my ribs and sternum which keeps catching my breath..I did have a headache when I woke up, but I have had a bit of fresh air this morning and it has now gone..

Every day I awake to different symptoms or my symptoms in different degrees of severity!! These symptoms can last all day, a minute, an hour or a few hours, I never know...I have now got to a stage where I consider each symptom, but I can't linger on it, otherwise I would not get on with anything else all day! I have times where the symptoms aren't controlled by medication and I can't ignore them, or I have too much time on my hands and I think about them too much...I have to keep busy either by being with other people or by doing many different tasks... If I sit still too long and say..watch TV, I get fidgety, it allows me to feel my symptoms and then I get in to real pain..I know the pain is real and I am not imagining it, but if I try to forget it, it does go to the back of my mind a lot of the time.. Mind over matter and sheer bloodyminded-ness otherwise I would never get out of bed!

I have to be really careful with others who are ill though, my sensitivity for pain is huge, I used to be a very sympathetic nurse, but living with pain every day does harden you, the more pain you have, the better you deal with it I think. I have to remind myself to acknowledge one of the kids "hurts" or my husband having a "sore back". "Sore back??" - you don't know what a sore back is!!?? I have to stop myself saying this, "Welcome to my world" springs to mind, but I can't say it as I have to empathise and acknowledge how ill or tired someone else feels. Just because I am tired and in pain all the time, doesn't make their pain any less...in fact, because they are not used to being in pain, their pain is all the worse!

Some people close to me have commented that they realise how I feel now if they come down with flu or a heavy cold, but this is how I feel every day, they are going to get over their flu in a few days..living with Hughes or any other autoimmune condition means that the flu like symptoms can happen every day, or an hour a day or even come and go during the day, very unpredictable.

The unpredictability of this syndrome is very difficult to cope with as it becomes hard to plan events, social meet ups and occasions. I cannot tell how I am going to be from one minute to the next, never mind next June 14th??!! I went to my nephew's wedding last month, it was great to see everyone and the kids had a fabulous weekend. We travelled down to the midlands on the Friday evening and spent the night with one sister, to then have the wedding the following day with another sister..by 5pm I was ready for bed! I was very tired, in pain, as well as being frustrated with myself for being like this...I stayed until the end of the evening and I was glad that I did, but the following week I was really not good at all.. I wouldn't have missed it for the world though, I just can't do it every weekend!! I really do try to do as much as I used to, but I also have to pace myself, otherwise I can make myself really unwell. My husband is good at knowing that I need to get some space and relaxation and soon takes the kids out so that I can have a rest or do what I need to do - shower, bed, lie on the floor, whatever helps me..

Thanks for reading
With love
Wend x x x x

Word Finding Problems with Hughes and possible TIAs

Hello there!!

I thought that I would try to add more information to this blog on how Hughes can affect you in very different and very strange ways...I am a talker, always have been, always will be...I have worked in sales for the last 16 years, I am one of 5 children who all talk ten to the dozen, the noise is deafening if we are all in the same room! Our Mum and Dad were talkers, Mum was a natural sales woman, loved a gossip and would chat for hours and recall anecdotes of what us kids have done or said over the years. Dad talked - at people sometimes, but he liked to debate and put the world to rights! I spent a few years with him as an adult one to one, Mum had died and all the rest of my brothers and sisters had left home, so that left me and Dad, we rubbed along pretty well for those years and talked a lot.

When I met my husband, we hit it off straight away. Even so, he is not a talker, he is not a very good listener either, he will admit to that, but I have got used to silences from him and of course, they are comfortable silences, because he is my husband. My children talk, both of them talked early in the their development, they laugh, scream, shout and chatter most of the time. I talk a great deal with them, there is always noise and talk in our house...

December 2008 I couldn't talk for about a minute - I wanted to talk, but nothing would come out...the words were in my head, but the sounds wouldn't come out, only for about a minute..but boy was that scary!! I was tired and feeling very poorly at the time. I possibly had a TIA (transient ischemic attack - mini stroke) we shall never know for sure because the symptoms were there and then were gone as quickly as they came...

When I get fatigued, I can't think of words for items, or I say the wrong words for things...much to the amusement of the children!! I sometimes get through half a sentence and then can't finish it!! the children do!! This works well for them if punishment is the last half of the sentence, they can give themselves more lenient sentences!! If I had got the full sentence out, they would have been grounded for a week and not sent to their rooms like they finish my sentence with!! They work the system at times, I get frustrated, but it is funny at other times also...It wouldn't bother me as much if I wasn't a natural talker I suppose.. When you are used to talking all the time, being witty, sarcastic and clever with words, it takes a bit of your personality away, when you can't do it any more and that is sad!! Timing is everything in comedy they say and if I can't get the punchline out, the joke is not funny any more!!

The strange thing is that I type much faster than I can talk and I complete sentences without problem when I either type or write them down??? All very odd and obviously a different part of my brain is being affected by my sludgy blood which affects how I talk, but not how I type??

It isn't a life threatening or painful symptom of Hughes, but it is a frustrating one and something that chips away at your confidence and gives you a daily reminder of being a Hughes sufferer.

Thanks for reading!

Much love
Wendy x x x x

Hughes Fatigue...and a beautiful daughter...

Hello all,

Well I haven't been around because it has been my daughter's birthday and my hubbie's birthday this week and now I am absolutely cream crackered!! It has really taken it out of me, physically and emotionally and I am finding it very difficult to stay awake!!

Tuesday afternoon I promised my daughter that we would go and spend her birthday money at the Bear Factory!! We did and some!! The stuff there is fabulous, with huge "awwww" factor, but everything is sooooo expensive!! Anyway many tens of pounds later, we had a new bunny, with 3 new outfits, a raincoat, wellies and shades in a big blue box and off we went. When we go to Meadowhall Shopping Centre, I take my wheelchair as it gives me a bit more confidence to get around without falling over. Even so, moving myself in the wheelchair up slight inclines is very tiring and I do find myself out of puff and very tired. To an able bodied person, they would not notice how slopey the walkways are, but when you are pushing my weight, plus the weight of the chair, my arms and stomach muscles suffer, so that is aching arms/shoulders/tummy for 4 days after!! I only do these type of trips occasionally as it takes me so long to recover. It was my daughter's birthday though, so I had to make an effort.

She breaks my heart with her compassion and love for me...I am proud of her every day that she asks how I am, if she can help or reminds her brother to think more about the mess he is making...Every time we go out in the car she asks me if I need one crutch or 2, she puts the disabled badge in the window and always grabs my handbag so that I don't need to stretch to get it... she will always offer to push me in my wheelchair even though she has the strength associated with a 3.5 stone 9 year old!! She understands when I can't play stuff with her, she is fine with me not coming to sports day because it is being held on a field miles away that I would have difficulty getting to...she never seems embarrassed that I am on crutches and always explains to her friends that Mum has a bad back and Hughes..the bad back seems to resolve any questions that most people have instantly on meeting me...she can explain the Hughes though, what is happening with my body and why I get so tired and why I am achy etc...She has asked these questions and I have answered her honestly. She has seen me burn up in the sun, my joints swell, my skin rashes and mouth ulcers, my hair falling out. She sees me like this, yet she always says how beautiful I am and how none of it matters because I am the best Mum in the world...Well I am not sure about that, but what I am sure of is that I have the BEST daughter in the Universe..who doesn't know how much she means to me and how I wish that I felt better on a daily basis so that I could do more with her, that I wished that I wasn't an embarrassment to her, that I wished I didn't get snappy with her because I am so tired and how I wish I could summon the energy to get to that field to watch her come 2nd out of all the girls in Y4. Well done angel, I got to watch you dance at 4 galas and festivals this year and I got to watch you sing your heart out in the choir at the school production of Oliver. I also saw you perform your cheerleading routine that you had choreographed. You are great, you are talented, beautiful and so very very loved....you are my reason for keeping going sweetheart..

To all the Mums who have Hughes, I know that this will strike a chord, the frustration of being so ill, invisibly ill a lot of the time, really does take away a lot of the joy that our children can give us, but we need to keep going because of those children and hope that they understand that it is not our choice to live with Hughes, but it is our decision to live in spite of Hughes that keeps us going...and the love of our family that helps us do that.

Thanks for reading

Much love
Wend x x x x

How I got my (sort of) diagnosis...

Well,

Picking up from my post about diagnosing myself on the Internet over Christmas 2007, remembering my Dad's sticky blood and having the conversation with my GP who knew nothing of the condition, I had a quest - to get in front of a doctor who knew about Hughes/APS/Sticky Blood and then get my label of diagnosis and everything would be ok...that is supposed to be how it works...

Firstly I made a private appointment to see Dr Khamashta at London Bridge hospital, I had to wait a few weeks, but I had my blood tests done with my GP and I took them with me on my day trip to the capital...it was like waiting to see the Wizard of Oz and have all my dreams come true..I was sadly disappointed..

The journey was stressful down to London by train and there was a suicide on the line that day (Valentine's day), so all trains stopped at Luton and we had to get off and get on more trains to avoid the issue...it made me over an hour late, getting into St Pancras and I still had to get a taxi for another 20mins to get to the London Bridge Hospital itself!! I phoned them during all these delays and explained the situation and thankfully Dr K agreed to stay later and see me, bless him!!

I saw him, he is a charming and very charismatic man, born in Bethlehem and I sure think that he is Jesus Christ Almighty! He examined me, took a full history of my problems and my family medical history...then said that my results for the APS antibodies were negative..my blood was saying that I don't have Hughes Syndrome...how can this be?? I was distraught and he comforted me, he explained that he would do the tests again and he would ring me with the results himself when they were back in a weeks time...He did ring me back, the results were still negative..he asked me to speak to my GP about this and maybe go back and consider a diagnosis of MS...I really was not sure that this was the case, but I was waiting for the results of a brain MRi from the neurologists within the NHS and this would tell them..The brain MRi was clear..no MS? Could I have Hughes but have negative blood results - it was a possibility and I needed to be tested again after 3 months...

In the meantime I saw a rheumatologist locally and he again took blood tests and examined me, but concluded that I didn't have either lupus or Hughes because of my negative bloods and that his thoughts were that my degenerative disc disease was the cause of my ill health...back I went to the orthopaedic surgeons...they did a nerve root injection which did not improve matters - no point in operating, the nerve was damaged and was deteriorating...still my "Hughes" symptoms persisted...

I went again to see Dr Khamashta and he agreed that the symptoms and more importantly my family history strongly suggested Hughes, he could see the full picture and he decided to diagnose me as being sero-negative for Hughes Syndrome - meaning that I had all the symptoms and family history, but the blood results were negative..He advised a treatment plan of aspirin, plaquenil and maybe move towards a blood thinning agent - heparin/warfarin in time. This treatment, he explained would help to protect me, alleviate some of my symptoms and give me some hope..

The rheumatologist refused to administer the treatment plan locally as in his opinion he did not believe that I was suffering with Hughes, so I had to be referred on the NHS down to St. Thomas's to be seen by Dr Khamashta in the Lupus Unit. I got my treatment plan and I have been on it since last September, I am improved. The medication does take a while to take effect though and for the benefits to be seen.

I was reviewed by one of Dr Khamashta's colleagues in April of this year, he agreed with the diagnosis, adding in that I had the symptoms of Lupus and Sjorgrens Syndrome as well as Hughes due to my skin rashes, nail splinters, hair loss, dry eyes, fatigue and bone/muscle aches and pains. I got a depromed (steroid) injection and he has upped my anti malarial and I will be seen again down there next April...I am much better than I was before my treatment plan was administered, but I will always have Hughes and it shows itself every day - mouth ulcers, thinning hair, sun sensitivity, temperatures, dizziness, etc. etc. I am not well enough to hold down a full time job or get to a place of work ready to start the day by 9am, but I am capable of earning a living working from home, undertaking sufficient rest breaks and taking things in my stride...I still have to save energy for the kids, being with my husband and spending time with family and friends...I do my best, I get frustrated, but I battle on. Having Hughes is one long battle that you have to keep fighting...

I will pick up again in a couple of days...thanks for following this, I thank god for the Internet too!! Those girls at the Hughes Syndrome Foundation saved me from going mad! Just to let you know, they are updating their site, so it may not be showing at the moment, but please do go back as they are a great bunch that will help you enormously like they helped me..

Much love

Wendy x x x x

I actually got someone to find this Hughes Blog!!!

Wow!!

Thanks so much to my new follower who has taken an interest in this blog and I hope that it has helped her in some way. I hope that there is enough information here for her to get diagnosed, be able to talk to her family and friends and maybe get some treatment and relief!!

Well, I promised to blog more, but I have been so busy trying to earn some money, as you know I am trying to get this blog done, do my CIW course and get accredited to design websites and of course be a mother to my two little ones and a wife, daughter in law, sister, friend, etc. etc....also try and get a job to support my dreadful shoe buying habit!!

I was promised a job doing telesales self employed, but this is only going to be a few hours now until they want me full on in September...I am trying to get my website about Hughes up and running, hosted and everything..but I do need a job!! I am looking at internet marketing, but there seems to be a lot of scams about and that just isn't me!! I am going to have a go at Kleeneze, but god knows how I am going to get the catalogues distributed?? I think that I will use my daughter for the next few weeks to get as many catalogues out as possible, then I will find my customers from there and then I can take my time getting their catalogues to them.. I walk with 2 crutches, so going around the pavements isn't going to work! I was also considering dropping a few catalogues with a couple of firms on the local industrial estates and having a look if there were orders there?? I then need to "sponsor" other people into the business to do the same, I did recruitment for 16 years, so that should be ok..I can only ask can't I? I got recruited via a recruitment job board. I know that they will do some cracking offers at the moment because there are fewer and fewer jobs to be advertised, so I may ask a couple of the local ones to pop an advert out for me...I have a friend who does Forever products, but I am not a very good example of their products really am I??? He he!! Never mind, it would have been nice to get into her team as we worked together years ago, she was in Doncaster and I was in Leeds, happy days!!

Any way, all through this, the Hughes has been pretty much behaving itself. I had a dodgy Sunday the other week, where all I could do was lie on the settee and I felt awful doing that as it is really my only day to do stuff with the kids...When it hits you though, there is nothing that you can do...all I do is give into it and see if my body will heal itself as quickly as possible. The worry over money is not doing me a huge amount of good as I end up on the computer for more hours trying to get things to go for...but once I get the bit between my teeth, I will get on with it and I will make it work!!

I am stubborn like that and of course I need the money for the shoes that I have difficulty getting on my fat ankles!! but they look pretty and I don't walk far, so they never get worn out!!!

Take care
Love once more to my followers who are anonymous and my other one who isn't!!

Wendy x x x

Sorry to have been away so long...

The hot weather this year has completely floored me guys, I have spoken to other Hughies who are saying the same, some are even on Warfarin and they can't keep well all the time...the close weather, heat, sun and humidity are all things that I just can't cope with and it has sent me spiralling down into not wanting to do anything for a few weeks, I needed to recharge my batteries completely by just taking the kids to school and nursery and drifting through the 6 hours in between with a bit of readying, TV, DVDs, sleeping and thinking....I haven't felt well enough even to attempt to blog here, which is unlike me, but I needed to be in my cave and let no-one in until I had made friends with myself again, let alone any one else!!!

It is really tough to be ill EVERY day...I catch myself laughing at things, reacting normally to situations, then before I know it - something reminds me of my problems, a twinge in my back, a sudden numbness in my arm, a shooting pain in my chest or another mouth ulcer stinging!!!

I am a lot luckier than a lot of people, I am a master of my own destiny to a point, I am lucky to live in the western world with all the medicines we have to keep up going...if I didn't take medication, I wouldn't be able to take the kids to school, I wouldn't be able to function at all....

It is raining here tonight, the grass smells very green and looks lush, it is a lot cooler than it has been, we needed this storm to clear the electricity in the air... my head is more clear, electrical storms play hell with my joints and my head pounds....

I solemnly promise to not go into my cave for a while and find you some more interesting bits about APS/Hughes etc. I never finished my story of my wonderful meeting with Dr Khamashta, the very sweet Dr Sangle and the local rheumatologists (boo!! hiss!!). I will do these posts for you very soon.

Thanks for reading....

Wendy

xx

The APS Foundation of America

The APS Foundation of America, Inc. is the only United States nonprofit health agency dedicated to bringing national awareness to Antiphospholipid Antibody Syndrome (APS), the major cause of multiple miscarriages, thrombosis, young strokes and heart attacks. We are a volunteer run, community based 501(c)3 non-profit Public Charity organization and is dedicated to fostering and facilitating joint efforts in the areas of education, support, public awareness, research and patient services.

APS Often the Culprit Behind Heart Attack and Stroke in Younger Adults

The Antiphospholipid Antibody Syndrome Foundation of America, Inc. (APSFA) urges the public, as well as the medical community, to learn more about this rare disease. APS Awareness Month runs throughout June.

APS is an autoimmune disorder. Such illnesses occur when the body’s tissues are attacked by its own substances. In APS, the body recognizes certain components of blood or cell membranes as foreign substances and produces antibodies--a specialized protein the body uses to prevent infection--against them. It is the major cause of strokes in persons under 40 years old, blood clots (thrombosis) – which can lead to heart attack or stroke – vision disturbances and repeated, otherwise unexplainable miscarriages.

A heart attack generally occurs when a coronary artery clot blocks the supply of blood and oxygen to heart muscle. There are more than one million heart attack sufferers annually in the U.S.; about half of those stricken die. Unfortunately, many heart attack victims wait two hours or more after symptoms begin before they seek medical help. This delay can result in death or lasting heart damage.

A stroke, or "brain attack," occurs when blood circulation to the brain fails. Brain cells can die from decreased blood flow and the resulting lack of oxygen. There are two broad categories of stroke: those caused by a blockage of blood flow (called “ischemic” strokes) and those caused by bleeding. Ischemic strokes account for about 80 percent of all strokes. They usually are not fatal.

A transient ischemic attack, or TIA, is an ischemic stroke that occurs when the brain’s blood supply is interrupted briefly (10 minutes or less). There generally is no lasting damage, but recent research shows that about half of people who experience a TIA have a full-blown stroke within 24 hours.

APS is the leading cause of heart and brain attacks in people under 50. If you have a personal or family history of heart attack or stroke before age 50, ask your primary care physician to test you for APS. It requires only a simple blood test.

The APS Foundation of America is the only United States health agency dedicated specifically to bringing national awareness to APS. We are a volunteer-run, community-based, non-profit organization dedicated to spreading awareness and support to those with the disease.

Knowing more about APS can make all the difference. Get in the know and Get in the Flow!

Tina Pohlman posts a lot of great and interesting stuff on Facebook.com about having Hughes (they call it APS in America).

I have put a permanent link to their website on the right hand side of this blog.

Please do feel free to have a look at their site, they have a link back to here also!

I think I have Hughes Syndrome??!

Well, with my load of facts, website information print offs and a book on the subject that I had ordered online from Amazon.co.uk - Sticky Blood by Kay Thackray, I headed for my GP to get this problem sorted. I was sure that I had Hughes, APS, Sticky Blood, whatever you wanted to call it, I was sure that it was what I had and I wanted treating!! I had diagnosed myself, I knew what I wanted and it was with a brazen tone, that I told my GP that I had sorted out what was wrong with me!! I gave him all the literature, told him what blood tests I needed, what medication I could try and then I would know what was wrong, I would have my label of diagnosis and all would be well with the world.....(not so!)

My GP had never heard of the condition and looked it up on Wikipedia as I sat there!!! I was gobsmacked!! Why didn't he know what it was?? Hadn't he treated anyone with it before??? He didn't have a clue....he said that by going down the symptoms...he could tell that there were some matches with how I had explained how I felt and he was prepared to test my blood for the antibodies. The tests are very inexpensive apparently and he again looked up what blood tests he needed to order for me. He was fine about me diagnosing myself!!! Many GPs, I have heard, have not been so nice about being told how to do their job!! He was open to considering any option as we had had many conversations about my frustrations of not knowing what was wrong with me. He is a fab GP who did a lot of work in pain management at one of the Teaching Hospitals in Sheffield. He had explained that there were many people with unexplained pain symptoms and that although it was difficult to cope with not having a label for my problems, that he was more than happy to treat my symptoms and he believed them to be real, even if at times I thought that I was going mad!!

I had my blood tests and I told him that I was going to see one of the Specialists down at the London Bridge Hospital privately to discuss my diagnosis and treatment. He again was fine with this, at that time I was still waiting to see the neurologists in Sheffield, so no further referrals were due from him on the NHS until we knew what those guys thought.

I asked him if I could have a copy of my blood results when they were ready in a week or so and take them with me down to London, he was fine with this too. I had my tests done by the practice nurse that evening and I was ready to go down to London 9 days after that.

The day before my visit to London Bridge, I called in to the GP office and got the results of my tests for Hughes Syndrome which had been prepared for me in a sealed envelope to give to the specialist I was seeing in London the following day. I opened them up ....there were a few anomaly's with my bloods for general screening... but for having Hughes Syndrome - negative! Negative??? It can't be, I do have Hughes Syndrome...I know it???!!!

I was so upset about getting these negative results, but I went to the specialist down in London the next day. I was sure that their laboratory would test my blood and it would show that I had Hughes Syndrome, they would see that I definitely have it.....wouldn't they??

Hughes Support Forum London Meeting 23/6/09

NEXT LONDON MEETING IS Tuesday 23rd June 2009 The London Support Group monthly meeting VENUE has changed for this month and will be held from 5.30pm at Starbucks Cafe which is at the bottom of the escalator inside Waterloo Railway Station. Friends and family of Hughes Syndrome patients are also welcome to the meeting on Tuesday 23rd June 2009 from 5.30pm. Ann Sumra the Support Group Leader for London and will be there to welcome you from 5.30pm but is unable to be contacted by email at the moment due to computer problems. Ann apologises for the short notice and for any inconvenience this might cause.

Regards Hazel Edwards

Hazel sent me a message on facebook this morning, she wanted to post something on the blog, but I haven't left the followers tool on - I will change that....this is what she want to say anyway....

Wendy, I love your blog......I never realised the impact my support forum has on people's lives till I read something like your blog. I'm so glad that I decided to start it 3 years ago. I have spoken to so many people like yourself who have gone on to be diagnosed in the Lupus Clinic in London after finding no real medical help locally. Lupus and Hughes Syndrome seem to be closely linked although you can have one without the other. It is difficult to diagnose but the awareness campaign by the Hughes Syndrome Foundation is helping. Stories like yours make the work on the support forum so worthwhile especially when I realise how much difference it has made to other hughes sufferers lives. I did try to post this message on your blog but I needed an ID and had no idea how to get one. I hope you are keeping well and maybe we'll have another get together in Manchester Trafford centre again this summer. xx Hazel

Finding the Hughes Syndrome Foundation

During my investigations and research on the Internet, I came upon the HSF website straight away as THE website with all the answers and they had a forum for patients. I joined the forum even before I discussed the possibilities of having the condition with my GP because I just knew that all the symptoms of daily life with Hughes was how I had been feeling since July 2007. I realised that it was also how I had felt during 1996, 1997 and 1998 when I had thought that I was suffering from depression and that my degenerative disc condition was also playing up.

As soon as I entered the forum, I got a really warm welcome from Hazel, one of the moderators. I soon built a really good rapport with the people going on the forum on a daily basis, it was great to speak to people who completely understood my symptoms, how I felt, my frustrations, anxieties and fears.... they had all been there, some of them had horrific stories to tell about losing other halves to Hughes, multiple miscarriages, strokes, heart attacks and pulmonary embolisms. I felt as if my symptoms paled into insignificance compared to some of these people, as I was only experiencing the pain and disorientating symptoms, not the life threatening ones...yet! I was not made to feel like my pain was any the less though, I was welcome to discuss whatever was bothering me and to tell my story.

I found who I think will be a life long friend on the Hughes site, another moderator called Ally who lives just down the road from me in Barnsley. Since speaking on the forum, we have met up, our families have met up, we have talked over the phone and even had a day trip together to the Trafford Centre with a couple of the others from the Forum. There are always outings and meetings going on, they all went down to London for the Hughes Awareness Campaign at the start of June. June is APS Awareness month (it used to be September, but it got moved to coincide with the US one, it made sense).

She has listened to me during my frustrations with work and my husband not understanding me and I have supported her when she had to take early retirement on health grounds from being a District Nurse. Both of us have had to battle because of Hughes, it is that type of condition. It isn't well known, so no-one believes you have a disease, many of the symptoms are invisible - no-one believes how ill you are, it isn't easy to diagnose, tests can come back negative and doctors who don't understand the disease dismiss that you have the condition at all!! The treatment of thinning your blood is not offered generally until you have had a clotting incident - heart attack, PE or stroke, so you live in fear of this happening. Aspirin is advisable, but it may not protect you completely. However, starting to take a blood thinner is a life long commitment, once you start, you have to carry on and it needs checking all the time and the dosage altering depending on your food intake, mood or even time of the month!!! Anti malarials are another treatment - yes, you heard me right, anti-malarials!! They take about 6 months to get working in your system though, they have definitely made a difference to my daily headaches.

Nothing is easy with Hughes - getting a diagnosis, living with it, getting the treatment and living with the treatment....It is very difficult to get your family and loved ones to understand, let alone employers or acquaintances. It is very difficult to describe because no one day is like another. I may have a day which isn't too bad - I may have some pain, some dizziness and feel tired in the afternoon. I may have an awful day, when I just can't get out of bed because I have NO energy, my head is pounding and every bone in my body aches. Most days are somewhere in between. I have already told you about the Lupus symptoms and how I have to be careful in the sun, I also get the Hughes Syndrome symptoms which are the aches, temperatures, my hair falling out and black splinters in my nails. (A good reason to get gel acrylic put on them!). I also get the Sjorgrens Syndrome symptoms and these are dry eyes, dry mouth, chest pains and fluid in my ears. Many of the symptoms cross over for all of these auto-immune conditions. I think the most debilitating is the fatigue though, not just being tired, cannot get up and pick a discarded £20 left on the floor type tired!! - now that is tired, especially in Yorkshire!

They are a fantastic group of people at HSF and in recent months with "stuff" going on, I haven't been able to visit the site as often, although I do get the gossip from Ally on major events. It was the HSF who suggested that I speak to a specialist in Hughes Syndrome and get a referral to see one of the fabulous doctors at London Bridge Hospital. They also insisted that I start taking 75mg soluble aspirin daily to protect me. I got so much support and information from them and was accepted without being judged at all. I thank them enormously and always will.

You will find a link to their site on the right hand side of this blog as a permanent fixture, if you think that you may have Hughes, they will always be there to help and advise.

With all the information from these guys - the professionals, I just needed a quick word with the other professionals, starting with my GP!!

Sticky Blood!!

My Dad had always said that he had funny blood, during his time in the RAF during the war, he reckoned that they had to use a different stamp to all the others in the same line on his dog-tags...I am not sure what his blood type was, but he did have "Sticky Blood". Dad had had a couple of heart attacks, suffered with angina and then had a stroke, it was whilst he was getting his pace maker fitted that they discovered that his blood was positive for Sticky Blood. It was described to him as a sort of leukemia that makes his blood too thick and hence he got heart and stroke problems???? To be honest, I never investigated what Sticky Blood was at the time, Dad was a smoker and from what he was saying, this condition was similar to having high cholesterol or a lifestyle choice related problem....

My Dad lived down in Worcestershire, which is where I am from originally and towards the back end of his life when he was very ill, he relied heavily on my sisters (still living locally) to support him emotionally. They got involved with how he was and the medications he was taking...living over a 100 miles away, working nearly full time and with 2 small children, I was only able to see him a few times a year.

Dad often fell asleep when we were kids during the evenings, he suffered with headaches a lot, but I put it down to the stress of being the breadwinner and having 5 children and a wife to support.. My Mum died when I was 16, so the last 3 years that I was at home until I went to Uni, it was just me and Dad...on the whole we got on ok and he gave me loads of breathing space as I helped him in the house a lot. He had a few instances of getting nose bleeds that wouldn't stop bleeding, not feeling well enough to go places, sporadic aches and pains and other problems...I put it down to Dad's advancing years.

He had his first heart attack during the first week that I went to Uni!! He recovered quickly, carried on smoking and eating lard and hoped for the best... he then had other problems, including a stroke and COPD was diagnosed too. He carried on smoking and eating what he wanted, was diagnosed with diabetes, had another heart attack and was then put on warfarin and aspirin to thin his blood. The sticky blood diagnosis was never really investigated by anyone in the family, as I said, we put it down to Dad's lifestyle...

He died a horrible death in a nursing home that he never wanted to go into and he died with heart failure in the end, but by god he fought the good fight to the bitter end. I regret that I wasn't with him at the end, but I had said my goodbyes the day before he went.

When I was searching the Internet that Christmas of 2007 for my own diagnosis, I looked at the symptoms for Lupus, some of them matched, but not all of them, there was a hyperlink to Antiphospholipid Syndrome/Hughes Syndrome and I felt my symptoms were far more like this, then I discovered.... APS, Hughes, Antiphospholipid Syndrome...also known as Sticky Blood....thanks Dad, we got there in the end!!

I really do regret not doing more investigation into my Dad's Sticky Blood at the time, it would have given me more understanding of his symptoms, his fears and his pain. It would have also given me someone to talk to about my own symptoms...

That time when Dad said his arm hurt too much to hold my new born son and I was upset, even more upset when my Dad had completely forgotten that he had had a bad arm a week later!!?? Those transient aches and pains are a really bummer... and make you feel like you are going mad!!

I knew what my diagnosis was from reading the Internet that Christmas night...I just had to get a doctor to believed me now.....

MS Symptoms ??

Hello there

Well I thought that I would do the next few posts on how I started being ill, my varied symptoms and my journey to diagnosis and dealing with the daily issues and the psychological ramifications of having a chronic problem...a chronic problem that not many people have heard of!!

Well, back in July 2007 I had a bout of dreadful back pain. Back pain isn't something new to me, I prolapsed a disc when I was 21 putting a chicken in the oven and have had a "bad back" ever since. This period of back pain was the usual problems, but I was also absolutely tired to the point of falling asleep and having no energy to do anything. I had blinding headaches most of the time and I was getting numbness, pins and needles and pain in my arm joints and muscles as well as my legs (usual when I get sciatica). I was so racked with pain that it was keeping me awake in the night as I was worried what on earth was wrong with me, then I was falling asleep at other times as I was sooooo tired...I tried to go into work but I couldn't - just couldn't stand sitting in an office chair and all my other symptoms were driving me mad!! I had weakness on my right side, even in my right arm, the GP was perplexed as the damaged nerve in my back shouldn't affect my arm??? He referred me back to the orthopaedic guys at the hospital and I had to wait the usual time to see them and get referred for an MRi, then get that reviewed...all this took about 8 weeks...in the meantime I was a wreck!! I could not understand what all these other symptoms were about?? The summer was awful, I couldn't stand getting hot and kept in the shade most of the time, I was sweating all the time and ached all the time... Because I wasn't in the sun, if I did go in it..my skin burned like mad!??? It got to October and I was no further forward...I had a nerve root injection in my back to see if I needed another discectomy (previously had 2 done in 1993 and 2003). The nerve block didn't help my pain, so the surgeon told me that there was nothing he could do and referred me to pain clinic???? I was so worried and distraught that I couldn't stay in this amount of pain ongoing??? My GP referred me to a neurologist, again, back in the referral waiting game, it was January before an appointment with them came through....all the time I was in daily pain, all the time I didn't know what was wrong with me...my GP suspected Multiple Sclerosis at this point.... my bladder was weak, my right leg kept going from beneath me and I was getting pins and needles all over in sporadic episodes??? I felt dizzy at times and I was struggling to always find the words that I wanted...my 7 year old was finishing my sentences for me???? I was so scared and all the time I felt so ill... I spoke to a girl at work who suggested Lupus as a diagnosis, based on her Mum having it and it taking years for her to get her diagnosis??? I headed for the internet in search of some answers as I had never heard of lupus before???......

Christmas 2007 was spent on the laptop researching..then eureka!!! I had it!!!!

Thanks for reading..

Wendy

Lupus Symptoms

I am suffering in this heat today!!

We went to a "Fun Day" at Danny's nursery. They have it every year to celebrate the opening of the nursery, this is it's 5th year. It was a lot smaller than they have done it in recent years, but it was crammed with lots of activities and games for the kids to do. They soon got through a tenner in small change. I had to stand for a while and got talking to a neighbour to catch up. Before I knew it, she commented on me burning in the sun!!! My chest was bright red and I could feel my face starting to get puffy. We only stayed an hour, but as we got back to the car, I could feel my joints starting to hurt and where the sun had caught me, it was stinging!! Just a little bit of sun can make me feel so awful, I should have realised and sat in the shade, I didn't notice how exposed I was....

Warm weather was something that I always loved, but it saps what little energy I have now...I have definately changed into a winter person - but then again getting cold makes me feel awful too!!! Maybe spring/autumn are better for me really... I get so hot anyway as I feel that I constantly have a temperature, whatever the climate, but trying to get a shower, or do anything that takes some concentration or has be in an awkward position gets me sweating buckets!!! I really don't think the sweaty look is a good one, make up runs, dark rings of mascara, drips of sweat, wet hair....yukkie!!

I can feel that my ankles are swelling in this heat too and I took my rings off this morning after my shower as they were digging in! ouch! I just can't enjoy the sun any more, as I know that it isn't only today that I will suffer, but I will feel a bit more rubbish than usual for a few days yet...so difficult as being in the sun usually makes you feel good!!

Here is a piccie of a lady from the internet with the same rash that I can get...it really does look like I have caught the sun, but it doesn't peel like usual sunburn, there are little pimples under the skin beneath where it is red and it iches like an...itchy thing!!



For more information on lupus symptoms then visit:
The Lupus Site

Job Hunting!!!

Hello there,

I am sorry to have not added something yesterday, I was busy still job hunting.

There are not that many jobs being advertised that are strictly working from home, some are very risky, or want money up front or a plain not enough money!!

Working from home is good for me having Hughes Syndrome - this may sound a bit yukkie, but, having a shower, putting make-up on and being ready to face the business world in a suit completely exhausts me and takes me ages, so I try to avoid this until later in the day when I am a bit more with it!! Having dog breath and being in my joggies until lunchtime doesn't bother the cat but it would bother my boss if I turned up to work like that!! I still take the kids to school but then I am ready to start a working day at a computer and phone - just don't have me on webcam!!

Having a wireless laptop also means that I can lay down if my back is hurting and no-one knows if I am lying on the floor on the other end of the phone line!! I am able to take my medication when I am at home and I don't have to wait for colleagues to come back from their lunch before I take mine!! I don't have to get into any confrontations with colleagues either, which is always nice. All I have to do is my job!!

Nothing else to report... I will try and get some more Hughes Information posted over the weekend....

Love for now
Wendy x

Lacy webs on hands/arms/legs

I was just typing and noticed how bad my livedo is today - it isn't painful in itself, but it is a good indicator of how I am generally feeling. The more prominent the livedo, the more tired, fatigued and foggy I feel - I haven't looked at my knees for a few hours, they are going to be really bad if my hands are bad!!!
Here is an image of how livedo looks, it isn't painful, just a bit unsightly - especially in the summer months when you want to wear short sleeves!!!

I would say, apart from the pain issues of Hughes, the worst thing is the fatigue and the word finding problems. Not being able to think of the name for something and have your 4 year old finish your sentence or your 8 year old laugh, because you are in the middle of telling her off and no words will come out!!!! is very very upsetting, annoying and depressing. I am a sales person, talking is what I do best. I was examined by a neurologist the other week who was asking me the component parts of my watch - 3 different bits of it I just couldn't think of the words for them - winder, hands and buckle!!!

Many Hughes patients actually think that they are either going mad or are suffering from early on-set Alzheimer's - not funny!!! I do laugh about it, other wise I would cry, it gets embarrassing, I am much better at writing what I want to say sometimes - this blog is very therapeutic!!

Night!

Jobs!!!

I have a have had an email through about me getting a second interview for a job coming up in the Autumn!! Role play over the telephone which is fine...I do really need to get my head around the services that they offer and then I can get back into the swing of repeat telesales work. I have explained that I am unwell and that I am not able to work a full week, so they have suggested if I am successful, that I don't work monday mornings or friday afternoons and I am to take a 2 hour break in the middle of the day, it just needs me to be in telesales mode from 9am on Tuesdays, Wednesdays and Thursdays - I can give it a go...I just need to make sure that I go to bed early enough on these days and that I am super efficient at getting the kids off to school on time!!! I had better get the role plays done and them offer me the job first eh??

It will give me time during the week to do my study and play with the website/blog stuff that I am also doing...we will see. I have to watch another webinar for another role that I am looking at - doing admin/emails from home for a company who deal with claims on behalf of people....it starts at 1pm, so I had better establish link and see what that is about...I have to have things going on...otherwise I get very down and have too much time to think about being ill....

I didn't have a good night again last night sleepwise and was tired this morning, but better after a shower....I have to do something about my weight though - I gave up smoking but I am now addicted to food!!!!!! I need to speak to doctor about it as I am obviously taking in too many calories as I have difficulty burning them off as I don't move very much due to my mobility and pain issues.

We shall see eh??

Thanks for reading!

Video from Professor Hughes himself

The Prof explains about the terrible way that pregnancy is affected by having Hughes Syndrome primarily in these clips. Multiple miscarriages are often the time when women first get diagnosed with Hughes. I had 3 very early miscarriages over the years, but put them down to "one of those things" or "bad luck" or "my fault for working too hard".

When I got ill in 2007, it was only going back over my medical history - growing pains when I was little, teenage headaches and the multiple miscarriages, that I was able to tick more of the symptoms of Hughes. It is a complex condition, not ALL about losing babies, some men have it!! My Dad had it and it is very sad that I knew that he had it, but he or we didn't realise that many of his symptoms towards the back end of his life were Hughes related...I didn't realise that I had Hughes until after he died. He told us he had "sticky blood" - when my symptoms, lead me to investigate lupus, it wasn't an exact fit, I kept on investigating and I came up with Hughes - all of the symptoms fitted apart from having an actual heart attack or stroke...Hughes is also known as Sticky Blood!!!! well....blow me!!! that's why Dad used to fall asleep every evening and he always had odd pins and needles and storming headaches...he had 2 heart attacks and a stroke. The complication of his diagnosis was that he was a smoker and all his symptoms and problems were put down to that....We all know that smoking isn't good for us - I gave up last year when I got my diagnosis, but sometimes something else is going on in our bodies and it isn't all to do with smoking, although it doesn't help!!

Prof Hughes doesn't practice in the NHS any more, he can be seen privately at London Bridge Hospital, but the waiting list is very long to see him.

Regards

Been to see GP and done school run!

Phew!! As all Mum's know, the mornings between 7.30am and 8.30am have to be military precision or they just don't work!!! Dan wanted to wear a pair of "best" trousers for nursery...I started to argue, but then thought - "what the heck....he may get paint on them, but it will probably wash out and he better start getting them worn before he grows out of them!!" So Dan is the best dressed boy at nursery today, good for him... I have started to be a lot less het up about stuff like that. I suppose I have the theory now of....what will be, will be...why save a pair of trousers for "best" if that means only wearing them 3 times and him growing out of them before they have had his use out of them???

I had to see the GP for more prescriptions of pain relief, anti-inflamatories and paracetamol but also to sort out my sick notes. Got a new one for 8 weeks, so that takes me to nearly the end of July whilst I am trying to find a non-existent job that I can do and they will allow me to work from home. This blogging is keeping me going and I am learning all the time...I have a home study course to do as well which will keep my mind active - a CIW Foundation - which looks challenging - not properly started it yet, was advised by my tutor to get more web savvy and comfortable before diving in, so this is what I am doing!!!

I am seeing an old friend for lunch today, then it will be a quick rest before getting the kids!! I don't have time to be ill!!

I didnt sleep well again last night - lots of wanting to turn over, but not being able to without using the headboard to help me, waking myself up every time. Why can't I just lay in one position and sleep for a few hours??

Well, that is me for today.. I am still messing with the network marketing on this blog, changing bits and pieces, so that hopefully someone will come and view my ramblings one day!!

Speak soon!!!

An Introduction...

Hello, I am Wendy Ward and I am 39 years old, I am married and I have 2 children who are 8 and 4, a cat who is about 13 (lost count years ago) and I have Hughes Syndrome...

I wanted to write about having this condition, not to gain sympathy, but really to give people or the families of other sufferers an insight into how a Hughes sufferer feels and to give them a real understanding of how this dreadful disease can make someone feel. I also wanted to get a lot of things off my chest about my journey of diagnosis, about how it makes me feel as a mum, a wife and a person, about how I am judged and about how this awful condition affects everything that I do.

I have been diagnosed with having other auto-immune condition symptoms also, which include Lupus, Sjorgrens Syndrome and Raynaulds Syndrome. They are all connective tissue disorders, which are dealt with by a Rheumatologist.

I am lucky in that I have not had a stroke, heart attack or pulmonary embolism yet... these are what can happen to someone with Hughes Syndrome or to give it it's proper name - Antiphospholipid Syndrome. It is also shortened to APS, APLS or Sticky Blood! With so many names for the same condition, it is no wonder that it is sometimes difficult to get a diagnosis!

I am not a doctor and I am not here to guess about the medical aspects of having this condition, all I can do is give you my account of how the condition makes me feel and how I chug along life with the condition, knowing that there is no cure, that I am taking my medication and I have to just get on with it....

I have posted links to a couple of very good sites that you may want to visit for more information regarding the medical side and what support is available, for now... please keep reading as I get together relevant information and post about how things are going... thanks for reading.