A bit out of everything at the moment, but...

Hi to All

This is (a whine later) and a Thank You to everyone on here for the support and inspiration shown to all who post. Sometimes it really brings tears to my eyes that there are a load of you who care about people you've never met. (Unless you do all meet up at the Ritz or whatever!)

This has been a truly awful week for me and though I haven't really summoned up much effort to post, it is so encouraging to read the threads and see the care and support that goes on here every day. I have really not come to terms this brain fog hassle. Most of the time I can't remember what was said in the first post of a new thread, let alone what is said further on down. Is this familiar, or am I going bananas?! I go to post a reply on a thread and can't remember what I want to say! I'm also getting my words confused quite regularly and numbers the wrong way round, even though I'm looking at a phone number for instance. My daughters are being very patient with me as they check everything themselves. Aaaargh. I can feel myself being down and depressed and I don't want to be but I can't lift myself out: it's like being trapped. I was looking forward to seeing my chiropractor this week and because my plantar fasciitis has been really bad, it had put the whole right side of my body out from my neck down through ribs, pelvis, hip knees to my foot with bad muscles etc along the way. I felt quite good when I left him but it never lasts. And then all the other bone/muscle aches everywhere else and it's not long before I'm walking awkwardly again and I might just as well not have gone in the first place! Well I could go on, but I'm trying to get myself out of this. I know I'm a worrier and anxiety is part of who I am, but the complete and utter brain fog thing has had me worried and I don't need to worry any more about myself! I had ME about 23 years ago and that was awful enough, but this whole pHPT thing seems worse. Am I going mad or is this a normal part of this dratted disease?

And thanks again for being there.

Love

Brigitte xx

PS Sorry for the whining and moaning!

Dear Brigitte, 

You don't need to apologise for having a moan. I have had a bad week too and I'm annoyed at myself for wallowing in self-pity but sometimes I think I'm just grieving for the person I used to be. The one who was sharp and had a good memory and didn't start crying for no reason and had the energy to go out and make stuff happen. And I'm frightened about how long I'm supposed to live like this with no end in sight.

I struggle to know how to explain this to others. That sometimes even the littlest things are a major battle for me. I don't know what I'm supposed to say when they ask 'how are you?'. 

I wish I could say something more helpful to encourage you. I think everyone here understands how you feel and are happy for you to moan and whine as much as you like.

Love
Dee

Hi Brigette and Dee

Rest assured you are not going bonkers, we can all relate to the brain fog and forgetting things, typing the wrong letters and getting things mixed up, lack of get up and go and all the other things that make us think we have lost the plot. These are all part and parcel of the dreaded P word.

You can have a moan on here anytime you like and usually someone is around to lend an ear.


Brigette i see my Chiro every 6 weeks and every time i wonder why   
But we do have a good natter so worth it i guess   

Have a good weekend and hopefully next week will be better for both of you.

Nelly x

Yes, we understand, Brigitte - and Dee has put it most eloquently about grieving for the person we once were before all this started.

Getting the numbers and letters round the wrong way is usual for me, too, and sometimes I can't even remember my own phone number. The brain fog and transposing letters in words when writing was really the first hint for me that something was going on. Then I found a connection with brain fog/fatigue/anxiety/depression and low thyroid, so I went down that route, and then I found this forum (the old one) and everything fell into place for me.

Hang on in there and, as Audrey would say, get back on the horse and gallop forward again when you are able. We'll all be cheering you on from the sidelines!

Love from Tigerlily xx

Sometimes I think all of these posts sound like they could be my own! We all seem to have the exact same thoughts and feelings. I was actually having a very bad day myself today. I was very frustrated and depressed because so many things are going wrong with my stupid health! I was talking to someone the other day, and they told me that as we age, things are going to start going wrong, and we just have to learn to deal with them. Bull $#!+! People will NEVER understand how badly HPT screws with your life! I could probably deal with all the normal things old age would throw at me if I wasn't dealing with so many $%&$#% symptoms of HPT!!! It is hard to deal with ANYTHING When your body is totally exhausted because you haven't slept for more than 4 or 5 hours total every night for years, and those hours were all broken up! I might be 6-1/2 months post-op, but I am still dealing with enough symptoms to keep me feeling sick and very frustrated and depressed! It is very normal for us to feel sorry for ourselves and feel the need to whine and gripe. Yes, I certainly miss the person I used to be too! I wonder if I will ever be that person again. I wonder how I will cope if I never am! But then I remind myself of each and every symptom that has resolved or improved, and I realize that things could be much worse. That gives me the strength to keep going.

I remember the feeling I had every morning when I would awake, before I was diagnosed. It was a feeling of terrible desperation and hopelessness. I felt like I was going to live in that Hell for the rest of my life, and nobody was EVER going to help me. Many days I just wished I would die. I felt if that was the way I was going to have to live the rest of my life, I just didn't want to be here anymore. I thank God every day that I found the beautiful people on the old forum!! They gave me the strength and support I needed to keep me moving forward! I am here to tell every one of you that no matter how hopeless your situation seems, there is ALWAYS hope of being well again! I will be posting something hopefully tomorrow about another appointment I had today. I learned there is yet something else that has malfunctioned with my body. I found it very hard to deal with. I shed a few more tears, had another of those pity parties, and then I got up, dusted myself off, and told my husband I refuse to be defeated!!! I have worked too darned hard to get where I am, and I am not done yet! I do think because I have been so darned exhausted for so many years, it is much harder to deal with EVERYTHING that comes my way, but I CAN do this! We ALL can do this!!

So shed the tears when you need to, whine and gripe when you need too, then, yes, it's back on the horses we go to ride on!!! Hi Ho Silver, away!

Audrey

Audrey, I can't add to that....  You truly are an inspiration!  I've had my own HPT demons rear their ugly heads again this past week, to the extent that I have just wanted to disengage from the world, retire to my bed and stay there until this time passes, and it has taken every bit of my physical and emotional energy to keep putting one foot in front of the other and keep going.  I feel so blessed to be embraced by so many lovely, caring people on this forum who 'give' unconditionally, who understand what this wretched disease feels like and how it shatters you physically, psychologically and emotionally,  yet still keep giving even when in the throws of misery themselves.  Very humbling .....

Love and hugs to all

Jasmine x

Yes, you are our inspiration, Audrey!

Hi ho, Silver, indeed!!

Lots of Love, Tigerlily xx

I have to say Audrey, Jasmine & Tigerlily I have known you guys through the old forum and now this one we seem to have been together so long. You have all had to battle and fight this disease with courage, humour and sheer strength of character, I'm so proud of you all and to have met you and been part of your lives as you go through this is an honour and an inspiration.
I know when I'm feeling so down I can't talk to my family because I don't want to stress them out, I can come on here and talk to you and others and know that you won't judge me or think I'm stupid for feeling a certain way, you will understand and help me through this. All the people on here are a fantastic support and dealing with this stupid disease we need that or we could so easily go so far down hill that it would be hard to recover.
Lots of love to you all Amanda xxxx

Thank you Dee, Nelly, Tigerlily, Audrey and Jasmine. I wish I could give you all a hug, but if I did, I'd probably cry all over you. I never cry, well Once I didn't anyway. Thank you so much from the bottom of my heart for your very kind words, thoughts and inspirations. Consider yourselves cyber-hugged!

I think Dee is right and I can't see much sign of the person that I was. This whole pHPT thing came upon me quite suddenly and I fought quite hard against accepting it and could blatantly find explanations and other reasons for any symptoms I might have had. And with my Mum really ill, I managed to push it all aside and cope with that pretty well. But since she's been better and is not in danger any more, it's like I've fallen apart. I could no sooner drive 250 miles there than fly to the moon and even a train journey would do me in and I was doing that every weekend! Who was that person because she's scarpered and left a weak wimp in her place. I think I resented it, but you've all helped me to see that I'm not actually losing my marbles quite yet. The "brain fog" had not attacked me so violently before and when it did, it was actually quite frightening and as one of you said, not remembering your phone number! What's that?! It hasn't changed in 23 years! I have felt really out of control and one of the big problems in life, is that the world doesn't stop and let you catch up.

One of the things is that I've had a series of health problems for the last 4 years and have had to have at least one operation, sometimes two every year. I nearly escaped it last year, but then broke my finger and of course it was ultra complicated and involved a long, intricate operation in the middle of December which wiped me out for weeks. (I'm not good with general anaesthetics.) I'm still having Physio for that and the tendon still hasn't recovered and now the Physio told me on Friday that he wants to refer me back to the consultant. And he thinks my carpal tunnel is coming back and I had to say NO! I can't deal with anything like that at the moment, please wait until the pHPT is done and dusted. And everything might be miraculously fixed after that! HAhahahaha, you can live in hope!

When I think about all the symptoms of pHPT, maybe I've had it longer than I thought because I've been fighting against many associated aches, pains and whathaveyou for a long while and attributing them to something else, but who knows. The adenoma that showed on the US and mibi was "large" but what does that mean and how can they say it may have been there for a while because they have no idea how fast these things grow! I seem to have been dealing with some health issue or other for years and now that I have another, they're trying to marry it up to other issues! I have to hope that it's not connected to anything else because I haven't even got to menopause yet and that's something else to look forward to. I'm still trying to cope with having heavy periods every three weeks (and come to think of it has added to my woes this week).

Anyway. The real me, you know, the one that's not a whining wimp, will say that I can actually cope with every day and there's not a lot of point in worrying about something that hasn't happened yet. She can be quite philosophical and sensible you know! She thanks you very much for all your support and gives you a warm hug or two and smiles at you. The wimpy me hugs you over and over again and weeps on your shoulder because she's so very glad you're there to talk to. This Jeckyll and Hyde bit is tough!

The horse metaphor is unfortunately a bit ironic since I can't actually jump on my lovely horse and gallop off because I would have no control over him! I can't control him, what with my useless finger and his keen ability and speed! Alas, I've been trying to find him a new home, but there isn't anybody that wants him because so many people struggled to keep their horses over the wet winter and there's a surplus of horses at the moment. Everyday I check on him and everyday I feel guilty that he doesn't do any work and is getting fat and lazy and his talents are wasted. I don't want to send him to a dealer's yard: he has to go to a decent home. It's a tough world, but he is another worry.

And my dog has epilepsy and I can tell you that dealing with an epileptic dog when you feel absolutely like a pile of youknowwhat, is absolutely horrible. But I'm always the only one of the family that she recognises and I couldn't not be there for her because I can settle her so she doesn't get quite so stressed and have a series of cluster fits.

Oh, life!! What's normal anyway?!!!!

Thank you once again for being there, all of you. I really don't think I could have got through this week without you and words can't express exactly how much you all mean to me.

Love
Brigitte xx

Brigette, are you wanting to sell your horse or send him out on loan ?

My daughter is a farm vet in Devon and she has 2 horses at livery, she could post details at the yard on the off chance that someone might be looking for one, also have contact with a riding school here in Somerset who sometimes take horses on.

Just a thought.

Nelly

Brigitte
I feel so sorry you are dealing with all this and having the added problems with your Mum being unwell, trying to find your horse a good home and having a dog with epilepsy must be a nightmare. This disease does take over our lives and personality, I think most of us have felt a loss of confidence and independence which is awful as we all seem as though given our health back we would be strong and feisty people. 
I've had times when just doing the everyday things like going shopping all seem too much. I then feel pathetic but I just remember that we've all been there and it will pass for a while. If only the doctors could understand. I think we are all a little worried about telling them how we truly feel because then they will diagnose us as having depression and try to medicate us for that.
It's not depression it's this damn disease and if only they got us cured quicker then we could resume our former life.
Sending you lots of best wishes, hang on in there we are all behind you.
Love Amanda xxxx

Nelly, he's a traditional (Gypsy) cob and he does ride and drive, so it can be a difficult market. Also, he only learned the driving skills last year, so he needs bringing on and he's probably not so young any more at 11. I would prefer to sell him but I'm open to sending him out on loan. He hasn't done any work since November and because of the very wet winter, his feathers have basically dissolved off so he looks a bit weird! He's not your average plod, being very keen and eager to go (which is why I can't hold him). He's a difficult sell because of this. I also have no transport for him. Thank you very much for thinking of me - it means a lot.

Amanda, I know what you mean and I do play down how I feel when at the doctors! Though when I went to the Endo, I had written down everything I wanted to say because I knew I would forget it. Even then I missed a question because I had forgotten to take my reading specs... Fortunately he was very patient and looked at me and not his computer or anything. I felt quite good when I left because everything was going to happen. But then I looked up all the things I was getting blood tested for on Dr Google and wished I hadn't and he also really wants to find a link to pHPT and my annoying rare disease. I don't want a link thank you very much! And I don't want him to write a paper on me having pHPT and the disease either, though everyone says that if he's taking such a keen interest, I will be treated well because of it. And if it helps someone else in my sort of situation, that can be good etc. I'm just sick of my health: it's been letting me down for years. I'm sick of myself really and of course with this whole malarkey, you end up thinking of yourself far too much because far too much of your body is giving you a problem!! Thank you for your support.

Love
Brigitte xxx

Sounds like one of my daughters horses, she's now retired and a lady of leisure but she is a typical gypsy cob with the feathers and long mane. 
Her other horse is a 5 year old Appaloosa and he can be very naughty when he wants but she loves him.
I will mention him to her just in case she hears of anyone wanting a ride and drive horse. 

Nelly

Brigette I have banged off an email to my Vet daughter in Devon and also to middle daughter who is a competition groom in Gloucs. I can also spread the word to a few more horsey folk I know. I know it's a long shot but worth a try. 

Nelly x

Bless you, Amanda - that's a lovely vote of confidence for us all - and I hope Nancy will join us in patting ourselves on our backs as well - and Simon too.

Now that we have come so far together, we can really see how far we've travelled, if you see what I mean.

And Hi Ho, Silver, was often just 'Hey, ho', Silver in many cases!!

Lots of Love and Hugs from Tigerlily xx

Thank you so much Nelly, that is unbelievably kind of you! I've had an option for him to live out his years in Shropshire, near where my sister lives, but it seems such a waste, he could do that here where he is now. I just think he deserves better than that and better what I can currently give him. I was waiting for a phone call last weekend from someone who was keen to take him on loan and that was just another phone call that never happened. I love him dearly having had him for 7 years but I can see he'd be better off with someone else. We will have my daughter's New Forest pony until the end of her days but she is 18 and semi-retired.

I am so touched by your thoughtfulness and kindness, thank you.

Love
Brigitte xx

Hi Brigitte

If you click this link, you'll get my long reply to your long post above.

https://onedrive.live.com/redir?resid=FC53EF62746E53FE!2332&authkey=!AKQZHBAx__PSHLQ&ithint=file%2c.docx

I had to do it in Word to remember everything I wanted to say, and then it seemed too long to post in this box on the forum!

Love Tigerlily xx

Mmmm now this has given me REAL food for thought too!  Especially the boney bits..... I cracked my coccyx when I was a teenager and it's given me gyp ever since.  Again in my teens I was diagnosed with what the ortho chap described as 'crumbling kneecaps', officially chondromalacia patellae, which culminated in many surgeries over the years (including having both kneecaps removed) and resulted in total knee replacements in both knees in my early 50s, having already had my right hip replaced for what they said was advanced osteoarthritis.  I fractured the scaphoid bone in my left wrist about 15 years ago and it never healed properly despite being in plaster for nearly 16 weeks, and it disrupted the blood flow to that bone, required surgery to pin it.  I have quite visibly got subperiostal bone resorption in my hands (thanks for the imaging doc Tigerlily) and, of all my symptoms, bone pain everywhere figures very prominently.  For as long as I can remember I have hobbled round like a little old lady with everything achy and stiff, have had lumbar pain for so long it just feels normal for me now, and rising from a sitting position, even after only a short time sitting, I have to try and gradually straighten up and make my legs work.  Surely there HAS to be a link to the onset of PHPT much, much earlier than anyone, anywhere realises? It can't be coincidence, surely....?

Jasmine x

Hi Ladies I also fractured my coccyx when giving birth to my son 25 yrs ago and it now is at a strange angle. Ouch !!!!
Amanda xxxx

Jasmine I agree this surely can't all be a coincidence. 

I too have suffered back/neck/ shoulder pain for the last 30 years. Have tried everything from massage to Chiropractic to Osteopath to steroid injections in my spine and sacroiliac joints. In last couple of years have had increasing pain in hips, knees, ankles, fingers and toes, and like Jasmine at times I "hobble around like a a little old lady". I am always achy and stiff and also struggle when I get up from a sitting position, having to gradually straighten up and wait for the stiffness to subside a little before I can get going. 

Lately I have developed a swelling on the inside of my left elbow and pain on the outside, extending up and down my arm. Driving is quite uncomfortable, which is a bit of a problem as I need to be able to drive for work. Now I have pain in my neck and shoulder on the same side, and can't sleep on that side any more, which is disturbing my already rubbish sleeping pattern even further. Dr Levy doesn't particularly think the swelling and pain are connected to the HPT, but reading all of the earlier posts I'm not so sure

I also suffered couple of years of heavy periods due to fibroids which 7 years ago resulted in me having a complete hysterectomy. Have been on HRT ever since and try every 6 months to stop but I still suffer hot flushes. As I don't feel with everything else that I can cope with them too, I start taking the HRT again. Starting to wonder if the flushes are connected to the HPT though? 

It's really no wonder we all feel a bit low at times with all of the rubbish we have to put up with is it? Starting to understand why people in the closed Facebook group refer to being HPT warriors! 

Kate Xx

Hi to all and thank you for your thought provoking posts. This whole HPT business makes you think and connect many dots, doesn't it?!

I feel so much better for having you all and not so frightened of everything. Sometimes it is extremely difficult to explain any of this even to your nearest and dearest. My husband is not good with illness and there have been too many times when he's had to deal with my health issues and he doesn't understand because he's rarely ill himself. It's me that's getting old and not him! 

I think we should have a hobbling contest. You can all come round for a cuppa and whoever hobbles the quickest can help me make the tea in case I burn myself on the kettle! You also get first dibs at the biccy tin. Or cookie jar, if you've come from afar!

Tigerlily, I started to reply to your epic word document earlier and created an essay myself also on Word. I think I've made it available for everyone to read, but I might have done something wrong - there goes my pessimism again. Let me know if you can't access the link.

https://onedrive.live.com/redir?resid=A34264BF744F802F!606&authkey=!AGnUVx5pZzOD1JU&ithint=file%2c.docx

Love
Brigitte xx

Well, cyber hugs on the way for you all!   Yes, it is wonderful that we can all get together on here and share so many things that our families and friends just can't understand, as hard as they might try.

Thank you all for the kind words. You are ALL inspirations to me!!!

Brigitte, I am very sorry to hear about Your mother.  I am very happy she is doing better now! It is hard enough dealing with this disease when it is just yourself you are worrying about!

I am also very sorry about the situation with your horse.   As I was reading Nelly's replies on here regarding this, all I could think of was how amazing it is that no matter what problems we are dealing with, somehow, in someway, someone on this forum seems to be able to help us through it.    That would be wonderful if Nelly could help you to find a new home for your horse.    It would also be wonderful if maybe someone could help to take care of him until you are well again and able to bring him back to stay with you.    I'm sure you will find a good solution to the problem.    You have a good heart to be thinking about the well being of your horse while you dealing with so many other things.    It would take a very strong love to realize he would be better off in someone else's hands for the time being.    Hopefully, you will be reunited in the future when times are better.    And maybe someday you will be able to climb upon him and literally ride away!!      Better days are ahead!

Audrey

Brigitte, thank you so much for sharing all of that with us. You certainly have had a rough life with all of those health issues! When I read something like that, it makes me realize how very lucky I have been throughout my own life. I might have had some health issues, but nothing as serious as many of you on here. I am very sorry you've had to suffer so badly. Many hugs coming your way!

Audrey

Oh Brigitte I have just read your long letter and I can't believe what you have had to put up with in your life. You must be one hell of a strong lady to have got through all of that.
I can't imagine what you must have gone through over the years and it has brought me to tears thinking about you as a young girl at school having to put up with such cruel comments.
I do hope the doctors can sort out your PTH problems and that may have all sorts of other good implications on your health issues.
You have every right to feel down and I can imagine that all the other problems on top of your health issues, have just about pushed you over the edge.
I wish I could come and give you a big hug and tell you what an amazing woman you are. Your family must be so proud of you and I know you are desperate to get better for their sake as well as yours.
Please don't hesitate to vent your stress and worries, it is the very least we can do to listen and maybe offer some advice on this PTH journey.
Sending you much love and hoping you can find the strength to get through this and on to better health.
Amanda xxxx

Brigitte, wow - you've just blown me away, to use vernacular that I wouldn't normally use, but yes, blown away I am by your letter. I can't find the words really to describe how I feel, except to say that I am in awe of you, and full of absolute total admiration for what you have had to overcome in life and the way you have dealt with it with such dignity and forebearance.  Hats off to you, girl.......! And to have to add pHPT to the mix seems almost unbearable - incredibly cruel and I would want to rage at the Gods on a daily basis!  In fact I do, but you've made me sit up and get a grip of myself this morning and shake myself out of 'poor me' mode.  Very humbling, Brigitte ....thank you so much for sharing your story, and know that we're ALL right behind you, cheering you on!

Love and hugs

Jasmine x