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Living a double life

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Living a double life

Post by pilipala on Thu Oct 30, 2014 9:54 am

Just saw this article about how an artist has tried to document the hidden life you have with bipolar disease and it really resonated with me.

http://www.slate.com/blogs/behold/2014/10/28/liz_obert_dualities_looks_at_the_hidden_and_visible_worlds_of_people_living.html

I think it could apply to parathyroid patients too. There are often comments on the forum about how other people think we look fine or can't understand how we can be that well if we're still up and about doing stuff.

I've been quiet recently because I've been away with work It can be hard to explain that I am able to put on a face and have a very busy October but only because then I'm largely asleep in November.

Also just wanted to say even when I'm not posting much I am read reading all the posts and celebrating the progress and lamenting the setbacks everyone is having.

Love and hugs to all,

Dee

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Welcome back, Dee!

Post by Tigerlily on Thu Oct 30, 2014 10:18 am

Hi Dee

Thought we'd lost you - so good to see you here again!

I can really resonate with this report - a picture tells a thousand words, eh? - especially the mess that surrounds these people whilst in their "hibernation" phases (and the essential cat-cuddling ...). I think the depression and mind problems are a major part of HPT that we don't really want to look at, in case it means we are losing our minds. I don't even like telling my husband about these mental symptoms. One of the main ones, however, is not feeling up to inviting family over for a meal, or (nightmare!) to stay for a few days, and so this affects him as well.

I seem to spend most of my time spreading my stuff about and making said mess, and then trying to pull myself together periodically to clear it up. Needless to say, I feel so much better when the place is clear and uncluttered, but it takes a terrific amount of energy to achieve that - and it always falls back again not long after.

It sounds as though you have had a very hectic time of it recently, having to position the "I am putting on a brave face" sticker across your forehead in order to work away from home. And as you say, you will need to sleep through November in order to have the energy to face Christmas, I expect.

A lot of us on the forum seem to be meeting up at The Limbo Café at the moment (instead of The Ritz, where we intend to congregate and dance on the tables when we have all been "fixed" ...). It's a grim old place, and we are there because nothing seems to happen for such a long time for many of us, or we've been left there by negligent and uncaring medics.

But the pictures you've posted have given me the ability to recognise myself in them, realise that depression is a major symptom of many disorders, and know that I'm not alone in feeling as I do.

Thanks, Dee. Sleep well, but keep us posted on how things are going for you, as we all seem to have difficulty remembering each other's progress as well!

Love from Tigerlily xxxx

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Re: Living a double life

Post by pilipala on Thu Oct 30, 2014 11:05 am

Thanks Tigerlily,

One of my coping mechanisms is just focussing on one thing at any time - this stops me stressing but it does have the unintended consequence that everything else just doesn't happen - like keeping my lovely forum friends updated.

I've been reflecting a lot on where I was this time last year. It was probably my lowest point - I was just unable to stop bursting into tears, didn't leave the house much and had no idea what was going on. Lots of my friends, several of whom are doctors had the big D talk with me. But I knew in my heart that depression was not the answer. Of course, technically, irrational sadness is depression, but I refused to accept that label.

I still refuse to accept it and will avoid any reference to it around doctors for the simple reason that it is secondary to my hpt issues. Treating depression will not fix my parathyroids, so until that's done, I'm not interested in focussing on it.

I'm in a much better place this year. So I got to the end of the summer and the same thing happened. I became irrationally tearful but this time I know to blame it on my estrogen being suppressed in order to limit the effect of my vitamin D rises and keep my calcium resolutely within 'normal' despite the crazy PTH. Normocalcaemic PHPT is more common in younger female patients and I believe there's a strong case for estrogen levels being responsible for this. Just gathering my research together on this.

Whilst I can't control my symptoms I feel much more relaxed about the future. I have a plan - do whatever I can to get as many bloods as possible and I feel sure, that however long it takes I will eventually be proved right and get myself sorted. I always feel better with a plan.

Hopefully will have more news to report soon. Looking forward to hearing how Jasmine's scan, Sue Hammersmith appt, Audrey's new meds, Nelly and Brigitte's ongoing recoveries and your and Rosie's surgical appts go (sorry if I forgot anyone there). Fab to have Anna join us too.

Love 
Dee

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Re: Living a double life

Post by pilipala on Thu Oct 30, 2014 11:09 am

Wait, also I must mention how happy I am to have Amanda here with us, whether she's quiet or not. We love you Amanda and are willing you to start getting some answers. xxx

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Re: Living a double life

Post by Amanda Lynne on Thu Oct 30, 2014 2:45 pm

Hi Dee
It's lovely to hear from you too and I can really connect with the putting that "I'm fine" look on, I even do it with my family.
You must keep up that fight and you will eventually get the cure you deserve.
My fight has changed somewhat but I stll intend to keep going until I find out the truth about this disease.
Love Amanda xxx
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Re: Living a double life

Post by Brigitte0 on Thu Oct 30, 2014 3:00 pm

I'm so pleased to see you here again, Dee Smile I really hope you reach the point where a cure is in sight soon. 

I find it quite difficult to be encouraged by the whole Parathyroidectomy = Cure any more and that worries me. I think we all go through stages of depression and disappear for a while to cope. Most of us do come back and are comforted by the friends we have here, but everyone is going through a difficult time, or a series of difficult times. And it's not always relieved by the long awaited op. It seems that the people who *are* "cured" don't stick around and we are left with people who are looking for information about the disease they have just discovered, people who are stuck in the eternal monitoring (or less), the people who are finally getting towards the op (usually not without awful difficulties along the way) and various stages of people who have had the op (sometimes twice) and haven't got over it/been cured or have developed a complication or another health issue.

I sometimes feel bad about posting on the forum because I can't always be upbeat and happy and I hesitate to actually say it, but don't count desperately on a Parathyroidectomy being the end of all your problems. Surgeons are right to say that you might not be cured of all your symptoms. You might be and many people are, in which case we can all be extremely thankful and overwhelmed for that person. I would be, but I also would be a bit jealous because that is (currently) my reality. I don't want to rain on anyone's parade, particularly you, Tigerlily, after all your trials and tribulations. I actually do still have a huge, positive thought that my cure is there in the future and it's just been delayed and I mustn't lose sight of it. I just think I counted far too much on said cure being a tad more instant!! 

I read the article and realised that I probably am still depressed, but that there is actually more hope than is sometimes obvious. The Limbo Land Café is a good meeting place, but I'm still looking forward to the Ritz Wink  

Love and hugs 

Brigitte xxxx
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Re: Living a double life

Post by pilipala on Thu Oct 30, 2014 3:49 pm

Hi Brigitte,

I'm glad you still have hope. This whole experience has challenged me in many ways and made me appreciate how important hope is, to get you through.

Everyone's experiences here has made me more realistic about the Holy Grail of a return to full health even if secretly I dream about it happening. But I do console myself with thought that even if an op doesn't get me there totally, any proof of an adenoma will make me feel vindicated and give me the evidence I need to stand up to the healthcare system here and fight for better pHPT treatment.

Also, as well as hope, I find comfort in everyone's honesty. I don't mind if you post when you are feeling down and negative because it lets me know I'm not the only one who struggles. I like the photographs for that reason, other people hide away, wearing pjs all day and letting the mess build up around them.

This whole journey has forced me to admit that I am actually weak and vunerable. It was a hard pill to swallow. (I don't actually mind being weak and vunerable - just so long as no-one else gets to see it.) So to realise that most people in the world are also going round putting on a face and hoping no-one realises they are weak and vunerable, makes you feel less of the odd one out.

Bring on the Ritz! We will never be totally fixed so let's enjoy ourselves anyway.

Love,
Dee

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Re: Living a double life

Post by Brigitte0 on Thu Oct 30, 2014 4:14 pm

Well Dee, I think your thoughts are very honest and uplifting, so thank you! I found the photos really quite positive because it was a recognition. 

Many hugs 

Brigitte xxxx
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depression "limbo land"

Post by mealinacup1 on Thu Oct 30, 2014 5:44 pm

Hi everyone,

I think sometimes you can put a brave face on and go out into the world and nobody would have a clue that you are feeling so ill, mentally and physically drained.
Some members of my external family say " Well you don't look ill " i have learnt to ignore remarks like that!

Also i agree with Tigerlilly regarding "Limbo Land" i can honestly say i HATE limbo land and that is precisely where i am now waiting for a surgery date.

I have received no further information on my test results, even though i was informed on 32/9/2014 that i would receive a copy of my results and so would my GP i am particularly interested in my bone scan results as my calcium and PTH levels are very high.

I have rang Hammersmith Hospital and sent e-mails and nothing! So being left in limbo like this, i am at the moment practically stalking the poor postman, this in turn does not help the depression, i feel depressed because of lack of information, i personally think you can have one of the best Consultants, but if that doesn't go all the way down the line, this is when you end up in LIMBO LAND!

Sorry negative mind set at the moment.

Take care eveyone

Diana

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Re: Living a double life

Post by Little Audrey on Thu Oct 30, 2014 5:56 pm

Ah, yes, the Limbo Cafe.    Dined there many times myself!  

Great to see you back, Dee.    All of us here understand the need to be absent form the forum at times.   And, as mentioned, it is always so nice to finally come back and be with so many wonderful friends who understand exactly what we're experiencing.

No, parathyroid surgery does not always cure all that ails us, but it's a start!  I am very happy I got that out of the way, so I could start working on the issues that remain.  I don't know if I'll ever get to the bottom of it all, but I will continue digging, and you all must do the same!     My parathyroid surgery took care of my bone pain and my IBS, and the IBS was a HUGE problem for me!   It also greatly helped with my depression.   I still get down at times, but it's not that deep, horrible depression I felt when I had those 2 tumors in my neck.   I feel sure that you all will get relief of some symptoms, if not all symptoms.   We must continue to march on!!

Yes, it is hard to hide our pain and our misery from others, but it seems we all feel the need to do that.    We try to save our family and friends from having to deal with any of it.  It's not easy being us!

And, by the way, I am still making plans to join you all at the Ritz when the time comes!!   I have never been overseas, but I WILL be at the Ritz for that glorious celebration!!

Audrey

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Re: Living a double life

Post by Lucycatnaps on Fri Oct 31, 2014 11:26 am

Hi Dee,
You have written and expressed far more eloquently than I could have done about the feelings I have  been having all year long.  I have a hard time keeping my emotions under control, the mind games as I call them are by far the hardest to deal with.  I too am convinced it is related to low Vitamin D and hormones as it did ease during the summer but I can feel it coming back again as we move into Winter.  I have cried more this year than in my entire life, events going off in the world etc all make me feel like saying stop the ride I want to get off.  It makes me feel old and tired.  I worry about what the raised calciums are doing to me, I have an awful fear of stroke.  I find it almost impossible to lose weight despite eating sensibly and exercising.  I force myself to walk and cycle to get my blood circulating, but I am fit for nothing after as my energy levels just plummet for the rest of the day.  I try and keep busy too but if I overdo it I feel sick with tiredness.  I don't even drink any more as that was an easy way to cut out calories, and before all this started cut way back on cheese and milk etc.  I am not perfect and do have my weaknesses, I cannot say no to the odd cookie or cake but do try and ration them.
Diana I know exactly how it feels just waiting for the post and the weeks just go by.  I too tried contacting Hammersmith and could not get a reply, thankfully a letter arrived but it just adds to the anxiety when you do not have a date to fix on.
Brigitte, I totally understand that surgery may not cure me, my endo did say that as well but it is a risk I am prepared to take.  I hope and pray that you will start to feel a lot better as the weeks go by and know how frustrated and impatient I would be in your shoes.  
Now to get ready and meet with the vampire (practice nurse who is very nice) and then dentist for check up on my mouth lesions, they have been flaring up again and again I am convinced low D has triggered this auto immune response.
Take care everyone,
Sue x
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Re: Living a double life

Post by mealinacup1 on Fri Oct 31, 2014 11:45 am

Hi Sue,

Its interesting you said that about your mouth lesions and low vitamin D, i have recently had a nasty cold sore on my lip and after that cleared up i then recently developed mouth ulcers, this has now cleared up i still feel very run down, but i  have thought about taking vitamin D again.

I am worried about taking vitamin D as my calcium level is 3.2 PTH 17 and i would prefer it not to go any higher. affraid

Good luck with the blood test ( sometimes you feel like a pin cushion!) and the dentist.

Diana x

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Re: Living a double life

Post by pilipala on Fri Oct 31, 2014 12:15 pm

I don't usually get mouth ulcers but I had two last autumn and another again last week which fits with your vit D theory Sue.

Diana - your levels are truly shocking, I can't believe you are being left in Limboland, you should be top of the list. 

Love and hugs,

Dee

xxx

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Re: Living a double life

Post by mealinacup1 on Fri Oct 31, 2014 12:35 pm

Hi Dee,

Yes it is interesting i think i agree with Sue's vitamin D theory.

Thank you for your comment, i am at the moment quite worried about my calcium levels, but what worries me is as i am on the waiting lists, how do i know if my calcium level has risen again, this does not help the anxiety.

Take care

Diana x

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Re: Living a double life

Post by pilipala on Fri Oct 31, 2014 12:50 pm

Hi Diana,

I've found GPs quite free and easy with the bone profile testing so you could try asking them for a blood checkup and also whilst you're there get them to write a letter/or phone to chase up endo stressing how much this is affecting you.

Unfortunately, that appears to be how the NHS prioritises patients. Those who shout the loudest.

If you're not able to shout, I'm happy to lend my voice, in fact I reckon we could raise a mob and woe betide any doctor who gets in our way!

Thinking of you,

Dee

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Re: Living a double life

Post by mealinacup1 on Fri Oct 31, 2014 1:39 pm

Hi Dee,

Thank you for your advice, i will indeed contact my GP asap and ask him to find out from FP at Hammersmith where i am on the surgical waiting list and ask for a blood test.
I have emailed his secretary, but i have received no reply as yet.

Thanks once again

Take care 

Diana x

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Re: Living a double life

Post by Tigerlily on Fri Oct 31, 2014 2:04 pm

Hi Diana

Just to let you know that I also have not received replies from Anne Marie (FP's NHS Sec) when I have sent emails.

I think this is a good plan to ask your GP to write to FP, reminding him of your Ca and PTH levels and telling him how worried you are that your Ca is so high, and to get an up-to-date blood test for Ca/PTH/Vit D and anything else you usually have, so that you have these ready at hand.

I would also ring the appointments line again and speak to the supervisor there (they do have one). Tell her your concern that perhaps an appointment for you has gone astray, or similar. Perhaps research into this from someone on the inside, so to speak, will produce something.

Good Luck with this, Diana - sadly you just have to keep pushing with these things as the system doesn't seem to work any other way.

Love from Tigerlily xxxx

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Re: Living a double life

Post by mealinacup1 on Fri Oct 31, 2014 2:43 pm

Hi Tigerlilly,

Good luck to you as well, its very frustrating! You seem to move forward and you think "hey i'm actually getting some where" then you come to a complete standstill and nothing.

I will keep pushing, but sometimes you can get battle weary, so its time to recharge my batteries and get myself into gear.

I hope your surgical date comes soon.

Take care

Diana x

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Re: Living a double life

Post by Tigerlily on Fri Oct 31, 2014 3:38 pm

Thanks Diana - I have just come off the phone with the appointments supervisor who offered me an appointment at 9.30am next Tuesday at the endo clinic. I can't make that from Suffolk, but perhaps you could?

I don't know if, in your shoes, I would have the guts myself to ask to be given that appointment, just go down there at 9.30 on Tuesday and ask for the results of the tests you've had, but it might be worth a try!

Good Luck, if you decide to do that!

Love from Tigerlily xxxx

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Re: Living a double life

Post by mealinacup1 on Fri Oct 31, 2014 5:01 pm

Hi Tigerlilly,

 I finally managed to get it touch with FP's secretary, i explained the situation and she said she would put a letter in FP's tray and ask him to let me know whats going on bone scan results, where iam on the waiting list. FP is on holiday at the moment.
I explained i was worried about my high calcium and it has been 5 weeks and i have not received all my results in writing yet as promised.
She then explained she could not find any thing on the system about any written results been sent to me and appologised for the delay.

So hopefully i will have more information next week

Take care everyone, have a nice weekend

Diana x

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Re: Living a double life

Post by Tigerlily on Fri Oct 31, 2014 5:11 pm

Well done, Diana, for getting a response - and thanks for letting me know that FP is away. That must be why they cancelled my 29 October appointment. If they would only say that he's away, we wouldn't pester them so!!

At least you can breathe easily at the weekend now that you have finally got through to FP's sec.

Have a good one and take care of yourself - Love from Tigerlily xxxx

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Re: Living a double life

Post by NancyMi on Sun Nov 02, 2014 2:34 am

Dee,
    I agree with you when you said that even though you may not be posting much you are still thinking of everyone here.
     I feel the same way and thank you for posting this about a double life.  I feel, I guess,  emotionally paralyzed for lack of another description, from this.  I also have to work with the public and it's somewhat of a demanding job.  Our health department has decided to relegate a lot of the work a physician use to do onto us. On top of that,  I actually had to send the governor of our state an e-mail.  After listening to an interview that he did by a woman regarding discrimination in the workplace, I felt I needed to respond when he said that there were laws in place.   I had to let him know that the system wasn't working.  
      Although I am sure parathyroid disease is not responsible for every health problem, I still believe it is a very dangerous disease that affects so many systems in our body and needs to be treated.  I also believe that many who either have a  known gluten problem or an unknown one, will be at risk for this.  Someone with celiac who is not on the gluten free diet will most likely be at great risk for depression and ultimately dementia.  I have read many times, that a person who is being evaluated for parathyroid disease also has "irritable bowel".   While getting parathyroid disease diagnosed and treated is so important, those that may have "irritable bowel"  also need an evaluation.  It is so dangerous having celiac and not having it diagnosed.  One of the associated conditions that comes to mind from untreated celiac is ALS.  I am not sure if the two are always associated but I have read that they can be associated. 
        Well, just wanted to say a little about the double life.  Many of you are an inspiration.  I can't say enough about your courage and intelligence.  I feel mine is not humming along very well.  
           Nancy

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Re: Living a double life

Post by Meggy on Sun Nov 02, 2014 6:59 pm

Dee and Sue, reading what you've put is like reading my own diary, I have been lurking but not posting as I too have been in a bit of a bad place mentally. I do read all the posts and really hope things start going right for us all soon xx

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Re: Living a double life

Post by Tigerlily on Sun Nov 02, 2014 7:50 pm

Bless you, Meggy, must be the change in the seasons or something that is making a lot of us a bit depressed at the moment (as well as the HPT problems) - sorry to hear that you're feeling the same way and hope you will perk up soon. Keep us posted on how things are going when you can - we don't want to lose you.

Love from Tigerlily xxxx

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Re: Living a double life

Post by NancyMi on Fri Nov 07, 2014 6:12 am

Tigerlily, 
    I appreciate how you give us so much guidance and support.  I know your numbers are somewhat high and I can imagine that you do not feel that well but you are still able to give us positive guidance.
    We're waiting to hear when FP will be scheduling you for surgery.  It should be fairly soon.
I made an appointment for myself in 3 weeks. Just hoping the surgeon that did such a good job in May will be open to helping me.   My last PTH was 88 so that still tells me there is one more bad gland left in there.
      Thinking of all of you.

xxx,  Nancy

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Re: Living a double life

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