Hi : Hello. So if anyone remembers I was having... - LUPUS UK

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Natz36 profile image
37 Replies

Hello.

So if anyone remembers I was having more bloods done for vitamin deficiency’s.

Well saw my doctor yesterday and they were fine she was very pleased with them, I started crying because it’s so hard not having a diagnosis yet , yet I’ve had so many things happening to me for a while now .

She wanted to give me something for my raynauds as it’s quite bad but she is aware I have balance problems I find it hard to walk ins straight line and constantly feel light headed some days are different though.

We are both just worried now about my balance as it’s just not great and notice if I’m doing to much it gets worse and especially on my period I walk like I’m drunk .

The good news is am waiting my appointment for the rheumatologist so that should be with me soon.

She checked my eyes as I mentioned the swollen eyelid and she noticed how dry they are yet I didn’t notice at all so she has given me cream to use at night .

I’m just feeling low as it’s all a bit too much and I think that worried the most is my balance.

Anyway me and my daughter are waiting to adopt a beautiful cat we are just waiting for the home check now then we can pay for her and sign the paperwork.

We are hoping we hear from them soon as we have everything for her and we have a lovely home for her and just want to spoil for her and give her the love and attention she needs .

I also think it will be good for me to have her just for cuddles and to have someone there constantly as my daughter has a job goes to college and works she’s such a good girl and a great help to me but she’s growing up and I miss having someone who needs me all the time .

Fingers cross we pass the home check and we can bring the cat home we are so excited .

Thanks for reading

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Natz36 profile image
Natz36
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37 Replies
MEGS53 profile image
MEGS53

Good to read your vit levels are fine, even if other things are of concern for you. So, soooo happy you're about to adopt a cat - a therapeutic cuddle or two is often more beneficial than drugs - and no side effects - it's a win, win really. Cuddle away and enjoy!

Natz36 profile image
Natz36 in reply toMEGS53

Thanks so much 🥰 yes we are nervous about the home check but we have everything prepared and ready for a cat to be welcomed in to there new home .

We had a phone call from the RSPCA before and they will contact us Sunday to arrange a home visit .

Thanks once again ❤️

MEGS53 profile image
MEGS53 in reply toNatz36

I'm sure the home visit will be absolutely fine, no need to worry. We've always had rescue cats, in fact my 17y old (!!) tom is sitting on my lap now. They are very good therapy in many ways - enjoy!! xxx

Natz36 profile image
Natz36 in reply toMEGS53

Omg that’s so lovely we just don’t know what they will be looking for but are house is safe clean and today and we are aware that the cat will find it difficult at first and want to hide so we are going to provide lots of hiding spaces around the house 🥰.

We have left a bed in our front room with toys but if she goes upstairs then we will leave it upstairs as she may want to stay there for a while

We can’t wait 😊

MEGS53 profile image
MEGS53 in reply toNatz36

Sounds as though you're taking exactly the right approach, well done you. Yes, give her lots of space and she'll come to you when she's ready - cats are always in charge of the situation! Enjoy.....

Natz36 profile image
Natz36 in reply toMEGS53

Do you have any tips or advice please ,

I have downloaded the booklet from the RSPCA website regarding bringing a rescued cat home etc . I have a vets already for when we have her , pet insurance ready to be sorted etc .

My garden has been done and is big and very safe big fences all locked up .

I’m just wondering what they will be looking at when they visit?

Thanks for any help

MEGS53 profile image
MEGS53 in reply toNatz36

You've done EVERYTHING! The home visit won't be a problem - honest! Just relax and enjoy, I know you'll be a fab cat mum. xxx

svfarmer profile image
svfarmer

Hopefully when you see rheumatologist you will get some answers- sorry to hear of your balance issues must be quite scary- how exciting getting a cat 🐈 Ive got a little dog she’s 2,1/2 yrs now - she is my world it makes me much calmer having her on my lap and cuddling her think animals are stress busters xx

Natz36 profile image
Natz36 in reply tosvfarmer

Thanks yes I got tinnitus about two years ago now , then came the dizziness then the balance issues sometimes I feel like I’m drunk , I’ve had an MRI and it was clear which is great news but I know my balance has definitely been affected but my now my eyes are sore and my ankle has swollen.

Have took pictures since I got the rash on my face before Christmas which made me so poorly didn’t know what was happening to me until I took myself hospital and they mentioned lupus soon as they saw me as my foot had also swollen x

Yes even my doctor said it will be so good to have a pet honestly I feel so scared since this has happened as I had Cushing’s syndrome when I had my daughter and I remember everything 😢

I now have one adrenal gland and kyphosis of the spine so I’ve already been through one illness which completely changed me and now things are happening it’s just hard to get a proper diagnosis as this happened when I had Cushing’s syndrome no one knew until I was admitted to hospital x

Thanks for your kind words x

MEGS53 profile image
MEGS53 in reply toNatz36

You've been through a lot - enjoy those therapeutic cat cuddles !

Natz36 profile image
Natz36 in reply toMEGS53

Thanks lovely so kind x I will can’t wait till are home check now on Sunday hopefully we pick her up Monday she’s called olive beautiful black girl 🥰

MEGS53 profile image
MEGS53 in reply toNatz36

enjoy. xxx

svfarmer profile image
svfarmer in reply toNatz36

I too only have 1 Adrenal gland as had one removed as I had Conns syndrome which is very rare , it was a benign tumor on my Adrenal gland and I was also very unwell with it- I had it removed and was well for 2 years and then diagnosed with Lupus - life sucks sometimes dosnt it , can I just ask you do you find it hard to lose weight ? As since my adrenal removed I find it really difficult to lose weight xx

Natz36 profile image
Natz36 in reply tosvfarmer

Hi lovely after I had Cushing’s syndrome and my adrenal was removed yes I did as I had lots of stiches after keyhole surgery and also had kyphosis but a few years later I slowly lost weight . I’m now eight stone eight but I do remember being 13 stone while I was poorly.

I like to eat really well although I eat dark chocolate every night 😂 I also eat vegetarian but try to have chicken once a week but not often at all .

Lots of water no caffeine .

It’s always hard to loose weight when you’re not well so try not to worry too much just look after yourself and rest something i struggle with .

Xx

svfarmer profile image
svfarmer in reply toNatz36

Thankyou xx

Natz36 profile image
Natz36 in reply tosvfarmer

You’re very welcome x

I just need to get my rheumatologist appointment then I’m sure I’ll be able to cope with things x

JennaShi profile image
JennaShi

How are your b12 levels? You

Mention dizziness and tinnitus, is this dizziness or vertigo?

A couple things to think about if it’s vertigo and tinnitus it might be good to look up bppv or Menieres. Also people tend to have low in range b12 and still have symptoms.

Happy for you and your daughter and your soon to be new furry friend!

Natz36 profile image
Natz36 in reply toJennaShi

B12 levels completely fine so it’s probably all connected to the autoimmune disease that’s going on . Thanks though.

bleeny profile image
bleeny

Don't worry about the homecheck. I used to do them for an animal rescue. Essentially they are just making sure that you told the truth on your application form, for example that you don't live in a bedsit with a pack of cat-hating dogs. They will want to be reassured that you are a nice person and definitely won't be looking for dust or tidiness!

Natz36 profile image
Natz36 in reply tobleeny

Thanks so much so reassuring I have slight OCD so I keep my house as clean as I can 🙈

bleeny profile image
bleeny

Sorry - meant to say good luck - I'm sure you will soon be cuddling your new friend. Rescue animals are so rewarding.

Natz36 profile image
Natz36 in reply tobleeny

Thanks lovely x

CecilyParsley profile image
CecilyParsley

Hi there Nat. A cat will help you tremendously. I have two gorgeous cocker spaniels and they make life worthwhile. I had bad balance issues, in fact the physiotherapist refused to work with me until I saw a Neurologist because of falls. I was diagnosed with Lupus but it did not explain my poor balance and lightheaded ness when going from lying to sitting, or the memory issues, dysphasia. I then was diagnosed with APS and put on simple aspirin. It worked very well for me. I am still very unsteady, clumsy and do fall and bump into things but there is a definite improvement. I hope you get the answers you need and good luck with the cat xx

Natz36 profile image
Natz36 in reply toCecilyParsley

Hello

I’m now sat thinking is it my fault as my daughter took me to the opticians as i struggle going far places anyway my eyesight has gone worse since 2018 ! The thing is when I went then my eye sight had changed . If my balance is connected to the glasses then hopefully i will be able to recover from that but mentally it’s really scary and I hate what’s it done to me 😢

I woke up with such bad pains in my left toe this morning it’s horrible it’s eased off I was also having night sweats

Hopefully my rheumatologist appointment will be soon x

Thanks for being kind x

CecilyParsley profile image
CecilyParsley in reply toNatz36

It is a difficult and often frustrating course to diagnosis and treatment sadly. I think the biggest issue for me is that the various specialisms fail to collaborate and communicate. Each issue is compartmentalised when it is very likely they are all linked. One thing I would say is it is not your fault. It will never be your fault. Be kind to yourself lovely xx

TM1970 profile image
TM1970

Aw lovely about the cat, we had home inspections too, it’s nerve racking. Enjoy her xxxx

Natz36 profile image
Natz36 in reply toTM1970

Thanks so much we have brought everything ready for her just want to bring her homed

Lupusrelative profile image
Lupusrelative

Do you have low blood pressure? This can sometimes affect balance. Believe it or not my doctor told me to use more salt when my bp is low. Always get your own doctor’s opinion on this though.

Will be fun having a cat! xx

Natz36 profile image
Natz36 in reply toLupusrelative

Hi lovely no I don’t I have it checked and it’s fine 😢

Thanks we can’t wait to get her . X

Lupusrelative profile image
Lupusrelative in reply toNatz36

One less issue to worry about! Let us know what you name your cat. We have a Siamese and a, I’m not sure what she is, but a lil devil for sure 🤣. Both from shelters. xx

Natz36 profile image
Natz36 in reply toLupusrelative

I asked my doctor should I get something to check my bp and she said yes if I feel it would help so I think I’ll buy one but I’ve suffered with this for such a long time it’s just frustrating x

She’s called olive ! X she’s 5 years old she’s so beautiful she was abandoned 😭

Lupusrelative profile image
Lupusrelative in reply toNatz36

Aww, you’ll have to find her a Popeye.

catblue1865 profile image
catblue1865

I have balance problems too, but not all the time, also really dry sore eyes, also have a 7 year old cat adopted her from a friend 2 years ago, live on my own she's wonderful company very gentle and playful as well, good luck with adopting your cat and with your medical problems

Natz36 profile image
Natz36 in reply tocatblue1865

Thanks lovely. It is just so difficult I developed the butterfly rash before Christmas felt so poorly nauseous for like five days and my foot had swollen anyway took myself hospital and they said suspected lupus and I didn’t have a clue !

So now I’m just waiting for rheumatologist appointment I have lots of photos of the rash and swelling of my feet and raynauds also my left eyelid swelling and droop X

The dry eye is so irritating but have the gel I use at night x

Aww I honestly can’t wait till we have the home check then get to bring her home I feel guilty we have only visited her once but it’s fAr where she is an I feel Ill and a bit run down when I go far distances x

Hopefully she will be okay when we bring her home and settles in well

We have already brought everything so we are well prepared for her x

Lots of love x

daisyd profile image
daisyd

Not sure if this will help, I have sticky blood,(site on here if you want to check out the condition,) anyway I had terrible balance, could never walk in a straight line until I was started 400mgs hydroxychloroquine from Zentiva

Natz36 profile image
Natz36 in reply todaisyd

Thanks lovely. I think I need to wait till I see rheumatologist as I keep reading things and it’s scaring me more my doctor told me off for looking on google 🙈 she knows my health anxiety is bad and I lie awake thinking I’m dying or I have a brain tumour sounds daft but I can’t stop and I think it’s because I have no diagnosis I’m also in a state of blaming myself and it’s all in my head x

daisyd profile image
daisyd

I know how you feel, yes wait for the rheumatology appointment, good luck, hope all goes well

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