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
Thursday, 30 July 2009
Monday, 27 July 2009
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
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
Sunday, 26 July 2009
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
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
Thursday, 16 July 2009
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
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
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