Gutted: Well I should have known the wonderful... - LUPUS UK

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Gutted

CecilyParsley
CecilyParsley

Well I should have known the wonderful Urology telephone consultation was too good to be true. Today I received a letter from the Urologist. The caring, understanding person I had spoken to for half an hour was apparently a nurse. The Urologist writes that she feels the bladder diverticulum is the probable cause of repeated infection and given my gross obesity I am “ challenging “ to treat. She would ordinarily want to review me in her clinic but given my gross obesity I am significant risk of Covid 19 so she will see me in four months. It has again made me feel like I am not worth anything. I have been using the treadmill daily, my knee joints are swollen and extremely painful but I am forcing myself to do it. I am now up to 24 minutes a day and was proud of myself. Sorry everyone I just needed to vent as I really don’t want to cry in front of my husband 😞

70 Replies
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I’m so sorry to the outcome of your telephone consultation- don’t beat yourself up your are doing as much as you can to lose weight and get fitter - I too was told last year I was obese and the nurse tried to lecture me about what to eat etc and told me to go to weight watchers - I came home and cried , I have a very good diet and before lockdown was doing Pilates twice a week - I’m sure it’s all the medication that we are on and the fact I had one of my Adrenal glands removed , I just cannot lose weight ☹️

It’s very disheartening for you , makes you think why bother. Sending hugs 🤗 xxx

Thank you for your understanding. I just feel worthless. I am a vegetarian, I eat lots of vegetables and fruit. I do not drink milk. I do not eat processed foods. I really struggle to walk with one kneecap collapsed and the other cracked. I worked so hard to lose 7 stone over two years and then when five times they refused to operate because of my thyroid, pleurisy, infections, Prinzmetal angina I got dishearten and put four stone. Since I was taken off the Hydroxychloroquine I have had eleven courses of antibiotics, chest infection, cellulitis, recurrent UTI’s. My fatigue is overwhelming. I am doing what I can given my circumstances. I have been so proud of myself this past three weeks using the treadmill. I shake like a rat afterwards and the pain of having to lock my knees to steady them has made me physically sick. It really has distressed me today. Xxx

Firstly let me say how proud you should be of yourself for trying so hard to lose the weight and using your treadmill. WELL DONE. I am not surprised the caring uro was a nurse, they have always been caring towards me.

Re weight. Maybe there is an element of not being giving effective A I meds. Diagnosis correctly treat the cause , lose the weight. I cannot stress enough that my "weight gain " is fluid where my poor body is trying to cope with out of control inflammation. Point being a few days on steroids saw me lose seven pounds. Over and over again. It really is time to stop this discrimination towards ladies of a certain age and their weight.

Yes i get it puts you at risk re covid and four months is not long to wait, only the NHS knows their health boards element of risk right now . But if covid is here for the long run what are they going to do ?, refuse to treat any one with weight issues. You are wonderful , brave and strong to have put up with this for so long, big hug Lou xx

Thank you so much Lou. I have tried so hard to lift my mood and put the disastrous Rheumatology experiences behind me. Today just reading the words grossly obese made me feel truly dirty and unvalued. It actually made me nauseous. Does she think I somehow do not know that I am obese so she has to expand it to grossly obese with the negative connotations of that word being something profoundly nasty? You are right, had they helped me by doing my knee ops I would be more active now. Had they helped me control the inflammation I would be more active now. At this rate I will turn into a bitter twisted old bag with an attitude to match the size of her ass 😂xxx

You are spot on re surgery. I had had three knee ops still relartivly young which meant i could keep my excercise up. Plus they put me on dailiy NASAIDS as I was a puzzle. Later it was not enough and i was in trouble due to poor dainosis. I am so cross on your behalf that you are being made to feel this way. Big big hug , lou xx

Thank you Lou. You always make me feel better with your kindness. Bless you xxx

282523
282523
in reply to louise-a

This is such a great point Louise-a - I just wanted to respond and tell you my recent experience.

I was recently in the obese mark and am only now in the very overweight mark. I have lost a stone and a half since January. The way I have lost this weight was not be eating more healthily as such - not but doing exercise daily on my own exercise bike and walking 5000 steps daily in the little garden or in the evening when no one was around during full lockdown.

It was because, after a couple of years of being taken off dmard treatments apart from a lousy anti convulsant - that caused me to gain almost a Stone in 4 months, I had this awful fluid retention and a rat in my belly called gastritis/ reflux.

The rat Is inflammation and only stops gnawing at my guts when my immune system is adequately suppressed. When that happens the rat dies off and I then have little appetite and lose interest in all but small portions of very healthy food rather than second helpings of healthy, and sometimes, unhealthy foods. Also the fluid retention everywhere that is part of the collagen vascular disorder eases off. I get more energy to exercise and feel overall improved.

The trouble is that the years untreated, apart from awful mind and serotonin altering meds, take their toll. So somehow you need to find the right doctor and explain exactly what you’ve explained here to us. I don’t know how but please don’t let the assumptions made by people who’ve never even met you and are just looking at you as a clinical entity on a computer, get there better of you.

You deserve help and the weight can and will be shifted if only you are given the help you need. So keep being proud of yourself, keep exercising as best you can and slowly but surely confound them all.

Apart from the nurse who sounds really nice. I wonder if you can locate her again and tell her what you’ve told us? She may at least be able to go back to the urologist and explain how hard you try and how despairing their clinical language made you feel?

Thank you. I truly hope that I do speak to her again. She did say that she would call to see how I was getting on with the oestrogen pessaries. I am sure she will be dismayed at what was written as we discussed my weight and she feely my incontinence and infections were not causative factors. Xxx

That’s good. Did you get her name by any chance? Even if your weight and incontinence are caused by obesity - it’s what is causing the obesity i would be thinking about because I’ve learnt from personal experience that inflammatory process of autoimmune disease can cause obesity just as it can cause anorexia - and there’s absolutely no role for judging and applying prejudices here where good doctoring is concerned. All is not what it seems.

People with our diseases can gain or lose weight unaccountably. I lose when I’m treated for AI diseases and I gain massively when I’m left untreated

I really hope your nurse phones as she’s clearly a gem. But perhaps you could speed things up by writing a firm letter to the consultant explaining much the same as you have explained here. Honestly I dread clinical letters now but despite my own weight no one has ever referred to it in a clinical letter. Most good doctors know we will beat ourselves up enough about this. It’s just so unnecessary and inhumane to my mind. 🤗

Thank you. I know the cause of my infections. I had so many gynae ops trying to get pregnant. I had three ops where they had to unstick the bowel, bladder and womb from my pelvic wall and each other due to endometriosis . I had further ops where they drilled holes in my ovaries to encourage follicle growth as I had polycystic ovaries. I had further ops to remove fibroids inside and outside the womb. In all these ops my bladder wall was damaged and I have a large diverticulum which retains urine and ulcerates. I have had an incontinence physio help me try and wiggle and empty it but I can never tell whether I have emptied it all. This is why I know I have an infection and often my urine dip will be negative. Sadly I often have to get a bad fever before I get antibiotics. The incontinence started after my emergency hysterectomy at aged 40. It was manageable then but now I have no control at all . It seems like all my muscles are weak. I have not had one doctor who takes this weakness seriously so I am at a loss.xx

You have been through so much. Lou xx

Sorry have been in hospital for 3 days getting ugh infusions so haven’t checked in until now. Thanks for explaining. What a lot you’ve been though.

I’m amazed that the urologist didn’t want to see you themselves and keep you under their wing? And also referring to morbid obesity without stating the cause seems bad practice.

Has no doctor suggested giving you a prophylactic antibiotic to stop you getting recurring UTIs?

Maybe when you’re less battered by the offending letter you could write one back summing up what has gone on and why you feel so understandably distraught about it? Xx

I have same kind of limb weakness and it is ignored too but I’ve worked out the cause myself from something I was told by a professor I saw last year. In my case I have Scleroderma and Sjögren’s plus thyroid disease and I now know my weakness is from fluid retention. From all you describe of your history I’d say this link is well worth you reading as it could apply to you too?

medicalnewstoday.com/articl...

I had a gastroenterologist suggest I had Crest. I did not know what it was but understand through Google it is a type of scleroderma. He wrote to my Rheumatologist stating I had the rashes, problems with choking and tendon spasticity. My Rheumatologist responded let’s concentrate on what you have not what you don’t have?? He then wrote to my GP saying that I believed I had Scleroderma? When I tackled him about he he stood up and said you are free to go elsewhere but I know that you have already had issues with my colleague. It was intimidating so I dropped it. I have an under active thyroid. I take 120 mcg of Levothyroxine. I like you suffer significant odema. There are times when I struggle to walk because I have no ankles now just cankles. I actually sleep with my legs raised above my heart. I am so sorry that you have been in hospital. I do hope that you are feeling much better after your infusion ? Xxx

Oh no. How absolutely awful. I had the same thing but have finally found a decent rheumatologist who found a rare antibody for Scleroderma (not sure which kind yet) so am diagnosed and getting good care at last. Yours sound monstrous writing that about you. I’m finding Mycophenolate and Iloprost Infusions (awful side effects but already feeling the benefit greatly) are helping me get back on track after a few years of neglect. I really wish the same for you. Hang in there please and don’t let these bad doctors grind you down. You’ll find your 🌟rheumatologist once you’ve regathered. Definitely look into CREST (now renamed limited cutaneous systemic sclerosis/ LCSSc) - it could explain a lot. X

Thank you so much. It is so bad that I do not expect good care or anyone taking an interest in Rheumatology now. I will definitely read up some more. I hope you can rest up and recover xxx

louise-a
louise-a
in reply to 282523

yes cause and effect. xx

louise-a
louise-a
in reply to 282523

Exactly it. It is so hard trying to get them to undersatnd on times. But a good consultant knows. Take care, Lou xx

Oh CP, I wish I could give you a hug. You really are not worthless, and you know I empathise with how you feel. Believe me, you are not worthless, you ahve helped me so much it's unreal! Secondlly, you should be so proud of yourself getting on the treadmill. I hate the treadmill! And to do 24 mins on the treadmill is incredible! I am drip sweating within a minuute and cannot stand it. The spin bike is a whole different thing though - we're best friends!

If you want to get into exercise, it's important to find something you enjoy and is comfortable for you. If you enjooy the treadmill, then stick with that. If you like walking outdoors, particullraly in green open spaces, then do that. If a class of any description is more your thing then do that. There are also so many different exercises that you can do in the home.

I say this as a huge hypocrite who has always been massively into exercise and always lead a very active lifestyle and in lockdown haven't exercised. I am massively craving spin class though and when I am back on the spin bike, I am sure I will feel more like me again.

I am a qualified fitness instructor and nearly qualified personal trainer. We were due to finish the course at the start of this month, but colleges and gyms are still closed, so can't do the practical element until one or the other finally reopens. If you need any help or any ideas for exercise let me know. I will also be going on to Level 3 Exercise Refferal, which looks at adapting exercise to suit individual needs and abilities. For example, nearly 3 years I broke my right wrist and it is permantently misaligned and held togethr by just one functional ligament, so a lot of things are very difficult. Through physio we have adapted many exercises, which gave me the inspiration to get into exercise referral. A simple one to demonstrate is anything in a pressup position. I cannot flatten either wrist (gangylion cyst in left wrist), so to do moountain climbers I do them with my elbows on a step. All the same benefits of the original exercise, but suitable to my body's limitations.

Please message anytime you want. I could even do a little body exercise programme that you can do in the home. It might just get me motivated back into exercise. I've had the life taken out of me and is difficult to get back on track, so I totally understand how you are feeling.

Oh and btw, I also think the consultant has been totally out of line with you. It is so difficult to find healthcare professionals that are kind, caring and supportive and reall listen. Sounds like the nurse was that for you.

And be careful with your knees. Difficult, but don't overdo with your knees. Again, I am hypocrite over here!

If you need to cry, cry. Let your body feel what it feels. It's important. It'll only come out in other ways anyway. Sending lots of love and hugs x

Thank you so much Ceri, it means a lot. Today I feel broken but I will get up again. My knees according to the Orthapaedic surgeon are some of the worst he has seen. I was complaining of pain for nine years before the kneecap dislocated and someone took notice. It was in an exercise referral class. I suddenly experienced severe pain which made me scream. My one kneecap dislocates because it is loose , the other has a hairline crack. There is no cartilage left so bone on bone that grinds when I walk. This is why I struggle to get up when I fall as I cannot kneel. I was scheduled for knee surgery five times and five times they sent me home because I was not well enough to have the surgery. I attended an OAK class where I completely failed to use the bikes as I just do not have that range of motion without dislocation. When I walk outdoors I use two sticks as my balance is poor. My thumbs also dislocate and walking has become so painful. The fatigue also impedes me and my husband has literally had to lean me against a wall, walk home get the car and come and pick me up. The treadmill hurts like hell but I put my music on, look out at the garden and do my best. I have resistance bands and small weights that I use too. I do eat well, i am a vegetarian, don't drink milk but in lockdown I have eaten crisps twice a week, a comfort thing and the occasional slice of cake. Xx

NoNo cartilidge in the knee joint - OUCH!! I do not envy you there. Aree you getting any physio? Sounds like yo really need it. They will help so, so much. Eating crisps twice a week? Is that it? I won't let you in on my junk consumption this lockdown! 🤣 I am someone who you don't want to be near if I go 24hrs without chocolate. In work, they always knew when I hadn't had any chocolate and would send me to the staff room for chocolate 🤣🤣 seriously, crisps twice a week is nothing.

And with diet, never cut out what you enjoy and never make huge changes in one go. It's not sustainable. Little and often, more sustainable and is how make life changes.

With mentions of joint issues, do you have hypermobility by any chance? I am intrigued by what you say about nee caps and thumbs dislocating. My knees caps have always been 'loose'. They go side to side, up and down and round and round. It's normal for me. and if a 'strightened' my legs, they are banana shaped. Thumbs very bendy too and can dislocate them easily. Was told all through childhood by gym coaches that I would have issues with my knees in adulthood. Yes, I do. Nowhere near the issues you do though.

With knees, it might be worhtwhile investing in knee supports - but the right ones. They really do help.

Feel for you with fatigue. It's a nightmare and seemingly no way of improving it, just riding it out. You really are donig amazing and if you do feel up to it and go on the treadmill today, but the hurt and upset into it and lose yourself in the moment and let all out. Music really does help.

Again, anytime you want to message or any ideas with bands and weights and any exercise, just ask. You are doing far better than you are giving yourself credit for. To get on a treadmill with knees like yours, seriously, utmost respect!

Really hope you get the surgery soon x

Aww thank you Ceri. I have leaky eyes today. I know I am morbidly obese. I put on ten stones when I first became acutely unwell. I was living mostly alone as hubby was working away from home trying to earn extra money as I could not get out of bed let alone work. I slept for Britain and lived off cereal and fruit during the week as I kept falling, broken nose twice, teeth smashed out, cracked knee cap, concussion, broken coccyx. I do not need anyone to point out that I am obese I see it daily. I hate myself but it seems just when I start to pick myself up, another doctor knocks me down. I want to avoid them like the plague. They just have me down as a lazy overeater. It just is not true but they will not believe that. Xxx

I was eating like a bird, constantly naseaous which got worse as weeks passed and every time ending with projectile vomiting fro a few hours. My weight would go up by a stone each time. Since being on steroids weight gone down and eating well and none of these symptoms. Ditto good results with dmards but my bloods went crazy. Lou xx

Hi CP. How totally unnecessary to call you obese, especially when you've been trying so hard to build on an exercise regimen. Nothing like kicking a girl when she's down! I wonder how these so-called experts would mange if they were put in our shoes for just one day. Would they even get onto a treadmill if they had our levels of fatigue and bone-on-bone pain - I don't think so! So, pick yourself up, dust yourself down and - gently - start exercising. Many of us here would give you a gold medal for your efforts - you deserve praise, not insults. I'm sending gentle hugs your way, xxx

Thank you so much Meg. Bless you that is so kind of you. Xxx

I'm not just sending kind words - I mean it! You deserve a medal, not insults......xxx

Absolutely! Positive re-enforcement all the way. Every step forward is a step forward and all positievs - no matter how small - should be praised. We are not positive all of the time and it is important to have postive re-enforcement when we are struggling. Being downtrodden just adds to it and can push into relapse further. CP, you are doing amazing. You ahve no idea how in awe I am of you using a treadmill - its my arch nemisis! Take it easy and easy said than done, but please get that drs words out of your head. We need to be kind to each other, not bringing each other down. Big hugs xx

Thank you Ceri. I wonder if these doctors were referred to as gross how would they feel? For someone who struggles to get through the day it can mean the difference between getting up and trying or giving up. I am definitely a carrot person rather than a stick person. A bit of kindness and encouragement goes a long way xxx

Oh, Cécile, that letter had to be so hard to read. You know, having access to medical records has negatives. This is one of them. The letter is written for one purpose, which is likely to document things for other professionals. When we read what it is written about us, it can be upsetting for many reasons. Obesity is the medical term for being over your normal weight. That is it. No judgement. Try to see it in the same context as if the doctor said you were pre-diabetic, or hypertensive or anemic.

Once, when I mentioned to my weight watchers coach that I wasn’t medically over-weight, she gently reminded me that I, indeed, I was. 😣

Covid really is still a risk. She was doing the right thing by postponing your procedure.

Big hugs.

Xk

Yes I know I am obese I cannot get around that but the word grossly used twice made me feel awful. My Orthapaedic Surgeon said it is no wonder you are struggling to walk you must be in terrible pain and have been for years. It was such a relief to hear. He patted my hand and said you have a bit of weight to lose and you will do it. I did I lost 7 stone. It was very hard but I did it. No judgement from him, nothing but respect and advice. I don’t know why every doctor is not that way. I was so relieved that I thought I had spoken to a lovely Urologist who understood so this letter just hurt me. I agree that I should not go to a hospital now, our area has a high number of cases. Thank you for the hugs, so much appreciated xxx

Hello Cecily

First of all I am sending you lots of hugs and very pleasant good wishes.

Please don't let the apparent lack of sensitivity and understanding make you feel down. You are doing very well despite all that you are going through and should rather be commended.

As Meg said I really hope some of these insensitive experts will be in our shoes for one day only and then perhaps they will be more understanding.

Please don't feel disheartened by this particular Urologist as there are very caring, understanding and competent professionals out there who have kept so many of us going.

Have a pleasant week and keep smiling because you are doing great!

Best Wishes

Thank you so much for the kindness and encouragement xxx

Ignore the hurtful and negative words, they won't do anything to help you, although it is easier said than done.

Remember what you have achieved. These awful drugs and immobility like on the pounds with everyone and I suspect that if your Consultant had had the same experience as you their words would be different.

Focus on you and praise your achievements. You probably achieve more in one day by just surviving the day than they probably do by writing insensitive letters.

Thank you so much. I put on my big knickers and did my 24 minutes on the treadmill, singing very loudly to Wham which lifted my spirits in 80’s nostalgia.I have done 12.7 km in three weeks which is not bad for someone with knackered knees and poor balance xxx

Big knickers are the way forward!!! Well done!

Good on you! And what a choice in music! 😀 90s nostalgia for me. So many happy song, so many summer songs. You're doing amaazing and you should be very proud of yourself 🤗💜 xx

Wow!! I was just about to write you a sympathetic and angry (at your Urologist) message. How heartbreaking to read that letter. But you've stuck it to him in your big pants!!

You are one strong lady doing that exercise with knackered knees and pain etc, you are a warrior! I do Pilates (my friend has a wonderful YouTube channel where she teaches it, so I get to 'see' her during lockdown), and I've restarted C25K with my daughter. I eat salads and stirfries, no bread and no booze during the week. Early days, but Despite this I'm still overweight. But I'm trying, so most days I'm proud of myself.

You are being amazing, you should have a smug smile on your face. 🥇

Wow you are amazing too. I wanted to buy a Pilates table...watching QVC it looks fabulous but I cannot get down on to it and cannot get back up from it so it would be pointless for me.I did a gentle exercise class and loved it, I even got my husband to come with me a few times and he had fun too but that is not an option with the Lockdown. I don’t drink or smoke and I do love an ice cream or occasional cheesecake on the weekends but that just does not account for just how obese I am. What does count is the lack of exercise. My calories just sit. I have a fitness app and I had to stop using it because I was despairing. I was entering my food intake and it was telling me I was under eating and should be losing 5 lbs a week when I was putting on 2 lb a week. I was prescribed diuretics because my feet and ankles were so swollen that I was struggling to stand let alone walk and of course I lost 3 lb but the next day it was back on. I am resigned to doing what I can and try my best. My cholesterol levels are 2.5, I am not diabetic surely this should alert them to the fact that I am not a food guzzling person? Thank you for your kind words. It means a lot to me. Good luck with the Pilates xxx

Omg you have been treated appallingly. Here you are trying your best and you are rightly upset. A nurse is ok but it’s a specialist that should be in contact. What kind of care are they giving to patients. I know how you feel as they are fobbing us all off. No wonder you are upset I would be too. If the urology consultant has a secretary then you need her number to call her for advice. Also I would write a letter putting into words your symptoms and how your not coping with just being left for 4 months. Ask them to offer more support and guidance. Let us know how you get on. Have a lovely day and let’s hope that next time it’s not the nurse you are speaking to but a fully trained competent and understanding specialist consultant. J.

Thank you so much xxx

I am so sorry that the nurse had to mention weight as it’s body shaming and very disrespectful to mention it and bring it into the conversation in the first place. In today’s society drs and nurses can be very insensitive and quite frankly brutal. Where is the bed side manner. The phone call could have gone a whole lot better sadly some of these so called health professional do not know how to treat patients with kindness care and dignity. Am sure she’s forgotten her nasty comments but you will remember them for quite some time. not all drs and specialists are nice human beings as sadly there’s lots of horrible ones out there. I know I have dealt with hundreds in my time and I am like a elephant I never forget. Maybe a talk with your GP asking for another specialist and another hospital may pay off. Wishing you a great week. Take care. J.

Sorry the nurse was fabulous. My husband answered the phone and passed it to me and as I had received a letter saying the Urologist was going to call me I thought she was a Consultant and marvelled that’s she listened, understood my issues and took the time to give advice. She ended by saying she would put me on the list for clinic to see if there was anything else she they could do for me. I was so grateful and hopeful for once. Then the letter came. It was not the obese part I took offence to because I am despite my very best efforts I know that I am, it was the word “ grossly” used twice. I am so sorry that you have had bad experiences too. I once had a Urology registrar tell me the reason I had repeated infections was because of the fat between my legs and I should consider bariatric surgery. Again the nurse there was wonderful and urged me to make a complaint. I didn’t I discharged myself I just could not face going through that again. In fairness the Consultant then was a very stern man but totally respectful and professional. Xxx

Sorry trust me to get it all mixed up no doubt due to my fibromyalgia brain. Am sure your future appointments can be better especially when you explain your experience. At least on this site everyone will offer moral support and guidance it what makes it the best ever. I wish you all the best and hoping your future contact is a much nicer one. Cheers. J

Thank you so much xxx

yet the hospitals are full of posters stating abuse and offensive remarks will not be tolerate by the staff. Should it not apply to patients too. xx

We the patients don’t even get treated like human beings. I have saw literally hundreds of drs and specialists and in my time I could be hard pressed to choose say 12 out of 200 that we’re kind caring and well mannered. Most see themselves as gods and I now dread appointments as you just don’t know who you will get. They need to go back to training school and be taught people and counselling skills for starters. I bet when they go for their own appointments they are treated with the utmost respect and dignity. My mum was a nurse a long time ago and was so kind if only everyone was like my mum then everyone would have a good experience and not be traumatised after a hospital visit procedure or phone call. Things need to change they really do it’s sad to think no one knows how their appointments are going to go until it’s over. Grrrr. J

It is sad to see. Yes ive seen too many in my time. Most of my difficulties have been in rheumatology and mainly nearer to home, I do not see it getting any better and some of my most trusted are retired or will be in next several years. Great to read about your mum, take care xx

That is so true and even if the appointment goes well it is my experience that they say something entirely different in their letters. Xxx

always. xx

Absolutely Lou. It just seems if you are obese they can treat you like a second class citizen. Thankfully most do not xxx

This is disgraceful behaviour on their part. Have you thought of change hung your urologist? There are better consultants out there see if your go knows of one

I have never met this Urologist, never even spoken to her. She has just gone on what she read from the Rheumatologist sadly. My previous Urologist was a real gentleman and I was treated so well with respect and dignity. I am at the point yet again where I do not want to see any of them. I know they do not have a magic wand but a little respect would go a long way. Xxx

and yet so many times rheumy letter are full of mistakes or omissions. xx

Or downright lies Lou. When the Rheumy (you know who he is) stated that I had tested on 13 points for Fibromyalgia during a “ thorough” examination, I was flabbergasted. The man never examined me in the twice I saw him. My hubby was with me the first time and my carer the second. Xxx

Same here hun with my rhemy. Oh their training must be from the same ship of fools. Have to say love a bit of Erasure, re your other post - music. Nos da, wishing you a better day tomorrow. Lou xx

Thank you Lou. I loved Erasure too .xxx

Yes i like your choices earlier on. Music has got me through some tough tough times. Lou xx

Please don't beat yourself up. You are obviously trying your best in spite of your problems. However, don't blame the urologist too much. I am sure she was not trying to be rude or obstructive. Indeed, she was trying to be protective. In her letter she was dealing with bald facts which she had to get over in just a few words. The fact is that, as we all now know, if you are obese you are in great danger from Covid19. She did not want to put you at risk by bringing you into the clinic. You really don't want to catch the virus. So don't take offence - she was just being pragmatic. Hopefully in a few months this whole nightmare will be over and you will be able to get the help you need. In the meantime, carry on with your good work in improving your health.

KayHimm
KayHimm
in reply to junemc

I know how hurtful it is to feel judged or shamed by any language. But totally agree with your assessment of the doctor’s motives. Cecil’s post prompted me to read an article about patients’ reactions to terms for over their ideal weight. « Obese » was not preferred!

I wonder, though, if it is non-medical people who have been guilty of hurting others - « body shaming » and that because of that the medical term obese took on such a toxic meaning.

Just a thought.

K

It was not the term obese that upset me Kay but the word “ grossly”. Such negative connotations to that word which she used twice. Had she used morbidly obese that is medical terminology and correct usage xxx

Oh, I see. I think that is, again, a medical term. It is not grossly in the sense we may use it, just a quantification. At least that is my take.

I really think these terms should he changed. They could quantify by using BMI, as an example.

You are not alone in not appreciating these toxic medical terms.

Xk

You are not worthless! The urologist was insensitive and should have known better. It’s not the way to encourage someone to lose weight. I work in a hospital (when I’m not shielding )and it is well within your right to make a complaint to the trust. In fact our department gets complaint letters for a lot less than that. We had a patient write a 4 page scathing letter of complaint about our magazines!

You could start by talking to the lovely, caring nurse and explain your concern about how you’ve been treated. It is hard to keep a good weight with lupus, it is an upward struggle and it sounds like you are doing a really good job of losing the weight. Do you enjoy the exercise bike? If not ( I hate it) try something you actually enjoy. It’s taken Covid-19 for me to leave the gym ( which I found a chore) and start dancing. I love it and I feel fitter than I have for ages. I’ve been using Body Groove (free 30 day challenge) and love it. It’s for everyone and there are lots of motivation, meditations, yoga elements. ( no I’m not taking commission) I just love it. Keep smiling, you are doing so well x

I used to love the exercise bike but I have one collapsed knee cap and the other is cracked and no cartridge so bone on bone. All exercise hurts, standing hurts, walking hurts. I actually grit my teeth lock my knees and do the treadmill. I am just so proud that I am doing it and the letter knocked me back. I really used to love dancing but now I am so mindful of the fact when my knees are not locked the one kneecap dislocates which is excruciating. My lovely OT got me a fall cushion which has made my life so much better as I used to spend hours on the floor as my husband tried to haul me up. I have lost 7 stones before over two years so I know I can do it. Your Body Groove sounds great. My aim during the gentle exercise class was to work up to the Disco class in two years when at least one of my knee replacement surgeries had been done xxx

The great thing about BG is you can modify it. Use a chair, sofa, no way is the wrong way. I have spent my life up to now thinking I’m doing it wrong, BG is so motivating, 😍

The other thing is I’ve had knee issues, I fell (spectacularly) and damaged my already arthritic Knees. Couldn’t get off the ground at the beach on my honeymoon, 😂had to get a stool to do low level work, have done Pilates and been seeing a physio for years. Dancing has really helped, I can get up again, without help I struggle to crouch but can get lower down now. 😍

CP YOU ARE FABULOUS!! 🤗💐🤗

I read this post yesterday n have been fuming on your behalf ever since!! 😠😤

I have a knee that regularly dislocates n I TOTALLY understand the pain that causes!! Omg I have to put it back back but the last time I did it I ended up in casualty n I had damaged the cartilage (that's what they thought) I had to do six months physio which has helped but I'm soooo wary of it happening again..same as u I can't kneel n I haven't been on the floor for ages!! 😹Then u have cracked other knee on top of that..I'm wincing just writing this!! 😖

Please DO NOT let this grind u down too much though coz you've come so far..never lose hope!!

I totally agree with u that morbidly obese is the correct medical term..the wording was totally insensitive n demeaning..but hey u haven't even seen the urologist..is she psychic? Honestly u can't get the staff these days!! 😹

Right enough of that moping..let's accentuate the positives...

Big up to u lady for doing the treadmill despite the pain you're in..the biggest of journeys start with the smallest of steps..do it whenever u feel able IN SPITE of what has upset u..use that energy to drive u forward..anger is an energy!!

I love the idea of u walking to Wham 😹 oh baby..I'm your man...do be doobie do be doobie doobie..if you're gonna do it do it right..then do it again!! 🎶🎤

You've got four months or so before u can be seen..so everything n anything u can do to improve fitness in between times will help surely?

Most importantly it's be kind to yourself time..nuture your bruised ego..have a rant n rave at the invisible urologist..I sometimes draw a little face n then caractature it (that spelling ain't right 🤷)..or I write it all down in a letter..with swear words included..I'm not actually gonna send it but it sure helps me to get it off my chest!! Then it makes me laugh when I read it back at..NEVER lose your sense of humour..life's 💩 without it I find!! N u have a fab sense of humour..as warriors we laugh in the face of adversity..if it ain't weight, smoking, drinking, menopause , hormones etc it's obviously SOMETHING that we've done to cause this rare autoimmune thingy..doc scratches head coz training was minimal in autoimmune disease ( not a clue) so OBVIOUSLY it's because we're this that or the other!! 😹

Take care n remember..Club Tropicana drinks r free!! 😜🌈😽😽Xx

What a fabulous post Kat. You have made me smile then laugh. Bless you you ought to be on prescription. I love the idea of a potty mouthed letter, just up my street. So many tines I have muttered obscenities under my breath leaving a Consultation. I am using hubby’s IPod which does not have very much I like on it so Fleetwood Mac and Wham it is. I need to download some Rag n Bone Man, Adele, Ed Sheehan, Luther Vandross, Amy Whinehouse, Sam Smith, Lighthouse Family, Wet Wet Wet and I will be a happy bunny. Thank you for the smiles and the laughter. Keep shining Kat xxx

Got to keep loving the music . xx

How dare she say that to you, your a human being and deserve to be treated with respect. I understand that doctors want everyone to be healthy but to me that was cause to fire her. Keep doing what you can and perhaps look for a new doctor. My heart goes out to you.

Thank you so much xxx