June 13, 2010 at 11:41 am (Uncategorized)
Tags: diastasis symphysis pubis, dsp, pelvic girdle pain, pelvic instability network scotland, Pelvic partnership, PGP, pin, SPD, symphysis pubis dysfunction
About once a month I get an email from women asking about my experience of the plating operation for Sympysis Pubis Dysfunction (Pelvic Girdle Pain). I absolutely hate not being able to write back and tell them that life is wonderful for me now, that painkillers are a thing of the past and that having the operation was the single best decision of my medical life. No, I don’t regret the operation but equally no, I am not fixed is about all the news that I can impart. More rambling and less concisely, obviously. I always reply to these emails, as the information and support I received from fellow sufferers whilst I was making the decision to have the operation was incredibly helpful. PINS (Pelvic Instability Network Scotland), a really amazing charity, are brilliant about passing on email addresses so people can get the information they need. It is the only UK SPD organisation, other than Pelvic Partnership, that I am aware of. I would be happy to be wrong about this, though!
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May 16, 2010 at 10:37 am (hospital, PGP, SPD)
Tags: appeal process, arthritis, diastasis symphysis pubis, disability living allowance, dla, methotrexate, oral tribunal, pelvic girdle pain, renewal, symphysis pubis dysfunction, tribunal
Following two years of Disability Living Allowance, earlier this year I was posted a renewal claim form. I diligently filled this in, keeping the information extremely similar to that given in my original claim, adding only my new arthritic wrist problems. Sent the form back and did not worry: my health problems have only increased in the last two years, despite operation, injections and various other treatments.
At the beginning of April, we were suprised and terrified (in almost equal measure) that my claim had not been renewed – apparently I now only deserve the Lowest Rate of Care. Previously, I was getting both the Higher Rate of Mobility and the Higher Rate of Care, I have no idea why I have been downgraded so utterly and abrubtly. Immediately, I telephoned the DLA helpline and described why the points in the letter (telling me I could do things that I simply cannot) were not true. I asked for a different Decision Maker to look at my renewal claim and was told this process would take eleven weeks. Fine, I thought. I also wrote a letter to the DLA, giving the reasons in writing that I had discussed over the phone and saying that I would like to pursue this to Tribunal level if the decision did not reflect the true nature of my disability.
No reply from the letter, but last week I got the reply from my claim’s re-look: the previous Decision Maker was correct. Now, however, the reasoning wording had changed; instead of “you are able to” do various things, I am now “at your own speed, you are able to” do those same things. NO NO NO NO! I phoned back and told them I would like to take this forward to Tribunal. On Friday I received the (tiny) form that tells the DLA this in writing. Fine. I will post it on Monday.
Now I have the fun job of, with a more disturbing lack of funds than usual, collecting evidence to support my appeal. I get to try to find a representative to put my case forward at the oral hearing. This means a trip to the Citizen’s Advice Beareaux in town to see what they can do to help/if they can advise me of other people to harrass. I have to talk to my GP, to see if she will write something supportive for me: outlining the continued problems I have had, how long they have gone on and how long she thinks they will continue. I need to try to get an appointment with my consultants (and, possibly, get a second opinion, as last time I saw my pelvic consultant, all he did was loudly repeat to me that I “should not be in pain – look at the x-ray, the plating is keeping your pelvis together.”) Why am I in agony, then? There is a problem.
I am still on the same medications I have always been on and I seem to be getting worse, not better. I am always in pain, I still cannot get around without help. I need to follow up the hope of crutches where you do not put all the weight onto your wrists. Next week is going to be a busy time. My mum is coming to visit from Suffolk, on Tuesday to Thursday, on Thursday I have my blood-tests at the hospital for my arthritis medicine (methotrexate). My GP does not work Mondays or Fridays… so I will have to go and queue for morning clinic on Tuesday before my mum arrives to gauge her opinion. I hope she will be as supportive this time as she was with my initial claim.
In short, a lot of pain and stress to come over an odd decision from the Disability Living Allowance people.
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May 19, 2009 at 5:20 pm (conversation, hospital, rant)
Tags: acne depression, acne medication, cne, glamorgan house, gp, heath hospital, isotretinoin, medication, ty morgannwg, uhw
It’s never a good thing when your hospital appointment confirmation letter comes with a map attached <– something I learned yesterday evening. After getting off the bus at the main entrance of the hospital, I was surprised to learn quite how much of a trek it is from there to Glamorgan House – the land of dermatology. I arrived at 17:00, for a 17:20 appointment, and was thrilled to be out by 17:45.
The consultant I saw seemed pretty good (though, I’ll tell you now, it’s never nice to hear a specialist to exclaim at how bad yout skin is), he prescribed isotretinoin, which is apparently the same thing my referring GP mentioned to him in her letter.
“You may have heard shocking headlines: Teen Acne Drug Suicide! Yes, this is the medication they were on, but only once in my 15 years of prescribing this have I had a patient develop severe depression… and that cleared right up as soon as they came off the medication. Nothing to worry about, I’d give this to my children if they ever need it.” says the consultant, knowledgeably.
“Oh.” I said.
“It’s really a very effective treatment.”
Well, yes, I probably wouldn’t mind my scarred face so much if I was a corpse…
I’m sure it will be fine. I’m fine most of the time. I’ve got to have blood tests before I get the prescription, which means another mission up to the hospital, so possibly I’ll go to see my GP beforehand for a chat about how much of a good idea taking this would be for me. I’d have to start on a low dose in any case, as it might affect the swelling of my wrist. Joyous.
In other news, Henry can say “love you” … but only in a really scary, zombie-esque voice. His daddy taught him.
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April 29, 2009 at 1:31 pm (rant)
Tags: cardiff, cardiff university, cardiff university closure, ccll, community education, education, lifelong learning, lifelong learning cardiff, lifelong learning tragedy
As of last Thursday I have been aware of something terrible happening in the Cardiff academic community, namely that Cardiff University has decreed an utter closure of the Humanities division of the Centre for Lifelong Learning. Disgusting. Earlier this year the same university openly celebrated 125 years of Lifelong Learning provided by itself. So why shut this down?
I have emailed Jane Hutt, the Welsh Assembly Minister for Education and Lifelong Learning and Dr David Grant, the University Vice-Chancellor showing my disgust for this proposal and hoping that the decision will be swiftly overturned.
Please sign the online petition against this, it’s so important.
If just for me – please get behind stopping this, I’m trying so hard to get my credits towards a Medieval History qualification, hoping to go onto the degree at Cardiff University. If I can’t complete the right amount of credits then I am doomed to have to either take A-Levels in the evenings (in subjects that I am not hugely interested in) or give up for some years until something like the Centre opens up again (this could be indefinitely).
BBC news has covered this, as have icWales.
There’s also an official blog covering the latest news and events.
Below is the email that came around to me, giving more information about the impending closure:
Massive Cuts threatened at the Cardiff Centre for Lifelong Learning
Embargo: 21st April 2009
Cardiff University has announced a proposal to close most of the subject areas in one of its oldest and most respected departments only months after publishing a book detailing its history and extolling its virtues. Marian Williams’s A History of Lifelong Learning at Cardiff University, details the 125 year history of the University’s provision of part-time classes throughout south-east Wales as part of a commitment that dates back to the original Royal Charter that established the University.
Cardiff Centre for Lifelong Learning provides the opportunity for students of all ages and backgrounds to access Higher Education irrespective of background and previous qualifications. The Centre currently runs hundreds of evening and weekend classes in a wide variety of subjects in Cardiff and across the whole SE Wales Region; from Brecon in the North to Porthcawl in the West as far as Caldicot and Monmouth in the East. Many of its students have gone on the take higher degrees and to develop successful careers as scientists, historians, writers, etc.
If the proposal is implemented then this will radically reduce the Centre, scrapping its entire Humanities provision, including literature, history and archaeology, music, creative writing, philosophy, art history, religion, photography and Welsh. The closure of the Centre will leave a huge hole in educational provision for the region with hundreds of adult learners unable to complete their studies and to fulfil their full potential. Neither senior academic staff at the Centre nor representatives of the part-time tutor and student groups were consulted before the announcement of the proposal on Monday 20th April.
The proposal places a question over the commitment of Cardiff University towards community engagement and indeed the value of the humanities more broadly. Essentially the provision is being devastated on the basis of economic projections and not on the viability of the current provision. This decision comes at a time when Lifelong Learning provision across the HE sector is being decimated across the UK by Universities looking to cut costs, flying in the face of Government commitments to provide opportunities for retraining during the deepest recession in decades.
Surprisingly, this proposal comes shortly after the University received a sum believed to be in excess of £2M from the Welsh Assembly Government to support part-time higher education as a result of the Graham Report. It also seems to fly in the face of the University’s declared commitment to community engagement evidenced, for example, by its support for the Beacon for Wales, the National Co-ordinating Centre for Public Engagement.
The proposal will undergo a three month consultation period. If it is accepted it will result in redundancies, fewer opportunities for specialist tutors and a substantial reduction of opportunities for adult learners including the retired, the unemployed and members of disadvantaged groups who have benefitted from the Centre’s classes for many years.
Full-time and part-time staff and students at the Centre were said to be shocked and extremely angry at the proposal and the lack of consultation so far in the process.
Figures
Conservative estimate of Courses to be Cut across SE Wales in 2009-10 = 253
Estimated Academic Staff/tutors affected: 83
Estimated students affected: 2000
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April 15, 2009 at 4:54 pm (Uncategorized)
pressed posies
a look into my less medical thoughts
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April 13, 2009 at 8:08 pm (hospital, PGP, rant, SPD)
Tags: analgesics, chronic pain, consultant, disability living allowance, dla, dsp, DSP treatment, hospital, hronic pain, meds, national health service, nhs, painkillers, pelvic girdle pain, pelvic pain relief, pelvic surgery, PGP, PGP injection, PGP treatment, rant, referal, SPD, SPD injection, SPD treatment, symphysis pubis dysfunction
The operation itself went well! I managed to get through my hospital stay without an allergic reaction (quite an achievement for me, I will admit here and now) and went home within the week. Largely this was due to my stubborn streak and hating to be apart from my family. Unfortunately I got a particularly nasty viral infection at home that made me quite ill – add this to the 12 hour release morphine tablets I was on for some time and my oh my, I don’t envy those lovely folk who were good enough to sit and commiserate with me when I couldn’t sit up for more than 15 minutes (an achievement and some force of will!) at a time.
The scar was healing nicely until approximately a fortnight ago when it went from a perfectly harmless looking reddish-pink smile to an angry red and slightly scabbed grin of terror! Upon heading to my GP I was informed that it was likely that 1 or 2 of my internal stitches had become infected. Antibiotics (terror of terrors! Happily I just felt incredibly ill and did not suffer anaphalactic shock) were prescribed and, as I have just run out and things look no better, I will be returning to the GP this week. Oh joy.
The crutches are gone now. My wrist/hand swelling and pain made it impossible to continue with their use. I cannot run. Walking is easier, but with the recent stitch infection it has been quite painful. Sitting cross-legged is still not recommended.
The wrist pain has kept me from updating. I now have a particularly terrifying wrist-splint in “subtle” beige (complete with metal bar to hold my wrist in place) which allows me to type if I am careful and fast. How romantic (!). I have had 2 steroid injections into my left (worse) wrist and 1 into my right wrist to date. Another into the left is scheduled for May. If it shows improvement I may have to subject myself to the considerable pain of this every month. I still have no movement in my left wrist, but at least the injection has taken the swelling down so I no longer look as if I have a strange hobby involving inserting golf-balls under my skin (my secret is safe, hurrah!).
The family are well and wonderful. Henry is teething (how?! he looks like he has a full set whenever he yawns!) and not impressed. He is such a little boy now, as opposed to our baby. He loves nothing better than leaving the confines of his buggy and running “free” with Michael clinging onto his reins.
The big news is our upcoming wedding! Roll on 2nd May!
I think my left hand may go on strike if I continue tonight!
Watch this space for regular updates/rants.
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November 16, 2008 at 11:23 am (birth, hospital, PGP, rant, SPD)
Tags: archaeology, arthritis, benefits, birth, bus pass, caerdydd, cardiff, cardiff university, chronic pain, depression, diastasis symphysis pubis, disability living allowance, dla, dsp, DSP injection, DSP treatment, free bus pass, hospital, hospital tagged analgesics, joint evil, joint pain, learning, medieval, medieval essay, medieval europe, meds, midwives, national health service, new medication, nhs, night class, orthopaedic, orthopaedic surgeon, painkillers, part-time, pelvic girdle pain, pelvic pain relief, pelvic surgery, PGP, PGP injection, PGP treatment, physio, physiotherapy, pnd, post natal depression, post traumatic stress disorder, postnatal depression, pregnancy, ptsd, rant, referal, sacroiliac pain, SPD, SPD injection, SPD treatment, symphysis pubis dysfunction, university, women's health
I write to you now from the stolen glories of my lovely manbeast’s computer. Shh, he is out buying me about 3 buckets of various fruits, so I am repaying him by updating my online world. It has come to this as my trusty laptop is suffering from a virus at the moment and Michael hasn’t successfully cured it yet.
MEDICAL NEWS
I am going to have the plating and pinning operation on November 28th, providing that when I telephone the hospital at 6am *gasp* there is a bed available for me (which there will be, unless a hell of a lot of emergencies happen the night before that somehow involve crushed pelvises). I shall be there for a couple of weeks, as I am a slow healer this could grow, but I really do hope that it doesn’t as it would mean the world to me to be out before Christmas so I can play a part in decorations. It may be that the part I play is largely a pointing and heckling part, but it’s a part all the same.
I am awaiting a Rheumatology consultant appointment for my randomly swelling and incredibly painful wrist and finger joints.
It’s not often that I’m thrilled to live in the day and age that I do, but it does strike me as quite lucky when I think about my medical history. Consider my chances of survival, if you will:
- My mum haemorrhaged after giving birth to my older brother, and then did so again with me
- I had a bilateral squint and had an operation to correct it when I was 4 years old
- I had my sinuses drained and quarterised at age 12
- I had viral meningitis following repeated attacks of tonsillitis and glandular fever when I was about 14
- I had my tonsils out at age 15
- My pregnancy and its health news are well documented here
- The birth of my wonderful Henry nearly killed us both. And no, that’s not me being dramatic, that’s a room of 20 odd specialists all with increasingly white faces in a room full of blood as my fully-dilated contractions went into their 14th hour and Henry’s heartbeat disappeared.
- I am allergic to: penicillin, augmentin, cephalasporins, septrin, trimethoprin, (and possibly another antibiotic that I cannot recall right now!) and COCONUT!!!
- To date I’ve had about 10 allergic reactions of varying strength (anaphalactic shock being the worst “side effect” I have experienced!)
Hurray for the National Health Service! I would be dead without you and so you have my unerring thanks and applause.
OTHER NEWS
I am taking the following classes, each of which lasts 10 weeks, at Cardiff University: Roman and Later Pottery from Cardiff and An Introduction to Medieval Europe: History at the moment; An Introduction to Medieval Europe: Archaeology from February next year and then Anglo-Saxon Poetry: An Historical Perspective from next April.
I think they are going well, and am quite sad that I shall have to miss a couple of lectures due to my operation – but I have almost finished planning out my essay for Medieval History and only need to look through my sources again to pin-point a couple more quotes before I start to tackle the actual writing of the thing! Oddly, I am quite excited by this. Hopefully the mere fact that I will have so long to devote my entire attention to the assignment while I convalesce will allow me to somehow turn out something wonderful!
Wish me luck for the operation, the healing process, and the essay writing equally as I’m not quite sure at this point which I am more daunted by!
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September 22, 2008 at 8:27 pm (hospital, PGP, rant, SPD)
Tags: benefits, bus pass, depression, disability living allowance, dla, dsp, DSP injection, DSP treatment, free bus pass, hospital, hospital tagged analgesics, hronic pain, meds, midwives, national health service, new medication, nhs, orthopaedic, orthopaedic surgeon, painkillers, pelvic girdle pain, pelvic pain relief, pelvic surgery, PGP, PGP injection, PGP treatment, physio, physiotherapy, pnd, post natal depression, post traumatic stress disorder, postnatal depression, ptsd, rant, referal, sacroiliac pain, SPD, SPD injection, SPD treatment, symphysis pubis dysfunction
Well, the appointment with Mr. Mohanty last Thursday went well, I think.
I am now on Mr. M’s waiting list to have the pelvic surgery as he thinks that with my level of instability it would be best if I get the area as stable as possible as soon as possible so that no further damage is done. The fact that I have this wrist problem and rheumatoid arthritis in my family means he doesn’t think it would be good to wait and let me deteriorate further.
So now I wait for the pre-op letter where I get to go over my allergies with someone and give them time to test worst-case scenario antibiotics on me if needs be! Then it’s 3 days minimum in hospital, and 6-8 weeks of resting at home. I’m erring on the side of caution wit those figures, though, as I am pretty reliable in the fact that I am not quick to heal. If I am not well enough to leave hospital after 3 days, I won’t. If I need my mum to come and help out with things when I do get home then I am lucky enough that she will do that.
Oh, I had 2 apologetic looking girl medical students in as well, as I was (say it with me now) “an interesting case” for them to look at. I don’t mind that, but I did kind of mind how I was described as “having made the odd decision to have a child younger than most women” to the medical students. Gee, thanks, Mr. Mohanty!!
In other medical news I have received a Rheumatology letter telling me that I am on the waiting list at the Royal Glamorgan Hospital (not Llandough or the Heath where I normally find myself, as their waiting lists for rheumatology are so long that I would probably have evolved into a being that doesn’t need joints anymore when I finally got an appointment).
Thursday brings me and Occupational Therapy assessment from a lady called Liz who sounded very confused by my condition on the phone, but hoped that there would be some kind of home improvement that she could find to help me in daily life. Oh joy of joys, daily life is, after all, one of my favourite kinds of life.
My symptoms enjoy keeping my guessing as much as ever. My scalp is currently, and rather randomly I might add, covered in scabs. I am lucky (though it doesn’t feel so lucky in summer) enough to have very thick hair so to the casual observer I don’t appear to be suffering from bubonic plague or anything as socially offensive as that. My elbows, knees, finger joints (all) and wrists keep turning hot, red, itchy and occasionally have raised, rash-like lumps. I know, I know, I am so sexy. Rawr.
With that, I bid you adieu for now.
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September 14, 2008 at 3:28 pm (PGP, rant, SPD)
Tags: benefits, bus pass, depression, disability living allowance, dla, dsp, DSP injection, DSP treatment, free bus pass, hospital, hospital tagged analgesics, hronic pain, meds, midwives, national health service, new medication, nhs, orthopaedic, orthopaedic surgeon, painkillers, pelvic girdle pain, pelvic pain relief, pelvic surgery, PGP, PGP injection, PGP treatment, physio, physiotherapy, pnd, post natal depression, post traumatic stress disorder, postnatal depression, ptsd, rant, referal, sacroiliac pain, SPD, SPD injection, SPD treatment, symphysis pubis dysfunction
Unfortunately, I haven’t been away relishing in the majesty of a miracle cure to all my pains. Alas, I am still technically a disabled person and every day it seems a little more real, what with the sleepless nights and days of excruciating pain. Yeah, they’ll remind you of your disabled status like little else will.
Anyway…
I had steroid injections in my pelvis a few months back and they did absolutely nothing for me. No pain relief, no joyful celebrating, no magical answers… nothing. Sad news, eh? This means that I’m off to see my consultant on the 18th to discuss my options and whether he thinks I’d be a good candidate for the plating surgery or somesuch. I saw my consultant’s underling minion second-in-command about 5 weeks ago and he said that he thinks surgery is the next option for me as I am so unstable at the front – the 5 weeks has been my thinking/discussing/making long lists time!
We have a lot of questions that we hope Mr. M (consultant) will be able to answer… we also are kind of relying on these answers not being so terrifying that I have to tear out my own eyelashes to give my shell-shocked mind another topic for thought.
I have not heard any more from Occupational Therapy about when my assessment will be, so I assume that I am still on their waiting list. Next time I hobble in to see a GP I will bring this up and make sure that the letter didn’t wing its way to my old hellhole address.
Remember my complete and brain-numbing muscle ache that happened back in June? It seems to have settled in my wrists. Yes, that’s right, I now have it in my power to add to my list of random symptoms unexplainable wrist ache, redness and swelling. Two separate sets of blood tests have ruled that I do not have the rheumatoid factor that would jump up and shout “This woman has rheumatoid arthritis!” but my results have shown such a high inflammation count that tongues are wagging. As the rheumatologist waiting lists are apparently very long at the hospital I normally attend, there’s talk of a specialist from a slightly further away hospital wanting to have a look at me as I am an “interesting case”. Oh the joy?
So now I find myself playing the waiting game and hoping that next week will bring that miracle cure I would love… or at least some hopeful answers to my many questions. It might, eh?
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