[Salopsally]

Hi friends and fellow lupus suffers,

Not posted here for a long time. Im just getting on living with Lupus as you do when you are well enough compared to where you have been in the past.
Thought maybe time I signed in and said Hi. Ive had lots of help from here in the past.

Felt I was getting a bit of a pain whinging on. Eventually I got myself on Plaquinnel.. no thanks to my Rheumy. I think Im doing good compared to how I was. Not that he would really know as Ive not seen him for months and months. My GP is very supportive but Ive not bothered her much lately either.

The terrible fatigue has lifted a lot.. the joint pains are lessened compared to what they were but things still come and go intermitently.

Is that how it is?

Im finding im increasingly disabled really. I just cant walk far.. I cant do steps I cant do standing I cant sit for long periods either. I sort of look ok. I have to explain my lack of stamina but its difficult because nobody really knows what Lupus is so I just have to say.. oh I have a bit of arthritis .. its easier because people seem to know what that is.

I still find it difficult going to large supermarkets. Took my grandaughter to buy a party dress today and cant even manage a small retail park. I do really struggle with walking.

Is that normal?

I still have real difficulty getting out of the car. Steps are a real nightmare. I cant get up from low seats and havnt been able to have a bath for about 10 years. (Have had a shower.. or two ... if you were wondering there lol) I cant sit on the floor or beach because i cant get up.

On the whole ... Im doing better than before the Plaquinnel.

Oh dear... why am I here.? There are lots of people much worse than me.

Suppose Im feeling frustrated. I want to be normal. I look normalish. Why cant I do things like most people?

I want to strut round town in high heels and not look back. I struggle in flat boots or flip flops in the summer. Still cant walk properly.

Lol... laughing at myself here.. Ive never been able to walk in high heels and being 5ft 10 I suppose Ive not really needed to.

I have been properly diagnosed as having Lupus but sometimes I think.. well what is Lupus? Nobody knows what it is. Even my Rheumy says.. get more exercise.. and you will be fine. I dont really feel that fine. Everything is quite a struggle.

Other than the above whinging Im quite happy really. lol.

Im sure I have nothing really to moan about ..least I can walk a bit and I know some of you have much worse problems.

Anyway I know this is a place I can come for a whinge. When I read your stories on the posts I feel lucky I am as good as I am. Thats bad I suppose to read other peoples misfortunes and feel lucky.. but I do. I suppose at low moments even small problems seem insurmountable dont they.

Anyway.. thanks for letting me be self indulgent. Hope you are all as good as you can be.

Luv ya Lots

Sal xx

 

[KarolH]

Welcome back Sally. It is so good to see you here posting again. Go ahead and whine all you want. We all do and all have bad days. One great thing about this site is that when one of us is down the others come on and pick us right back up. I have come to call these people my friends and some of my best friends are people I have never met!!!!

I understand telling people that it is a little arthritis as most people do not know what Lupus is, and that is very frustrating. It just seems easier to do this instead of getting into a big dissertation and then the other person still just does not get it to no fault of their own.

Ahhhhhhh, wouldn't we all love to go back to wearing high heels and being foot loose and fancy free. I also miss those days, your not alone.:wink2::wink2::wink2:

I am glad your doing better now on Plaquenil and that your having better days. I hope this continues and your health improves more and more everyday. Join us in the chat room sometime and so glad you came back to join us here. You have been missed.

 

[keebler]

Hi Sal,

It is good to seeing your are posting.

Glad you got on plaq and some of your symptoms are improving.
Please never feel that what you are going threw isn't as bad as some of us others. Lupus really stinks for us all, we all suffer and it takes a lot out of us all. You are important to us and keep on posting.

As far as your rhumey, have you thought of seeing a different one? He sounds like he is as helpful as an umbrella with holes in it in a down pour.

Even my Rheumy says.. get more exercise.. and you will be fine

he really doesn't understand at all.hno:

What meds are you on? I wonder if you haven't gotten the right treatment plan?

Take care and keep on posting.
Love,
Lyn

 

[LolaLola]

Hello Sal,
Considering you are doing better it still sounds to me like you have a fair bit to cope with. I can remember how much you struggled to get help.


I agree it would be lovely not to have to wear granny shoes and go home just when everyone else is coming alive-but I can't do it either.
Five foot ten is quite imposing-I guess people think you are a healthy girl.
Explaining to people can be so hard, like you I hide it when I can. I have been very lucky in that my friends understand.

I hope you are going to carry on posting here. I wish I could say something to help. I assume you are still running the business?

x Lola

 

[Lily]

Hi Sally,

Lovely to hear from you and especially that the Plaquenil has helped you some. It does sound like you have a way to go though :hug: Do you think this trouble with your legs is more pain related or weakness?

Like Lyn said don't ever apologise for venting your problems and NEVER compare yourself to anyone else. Lupus is what it is for each of us, basically it all horrible and everyone's challenges are what we are here for. To try and help no matter what the problem, and if we can't help we can sure listen.

love
Lily

 

[Katharine]

As far as your rhumey, have you thought of seeing a different one? He sounds like he is as helpful as an umbrella with holes in it in a down pour.

Lyn, my dear departed Dad would have said "as much use as a fart in a thunder cloud"

I agree with the others Sally, a second opinion would be a very good idea. it is good to know that plaquenil has helped. To an extent, yes there are ups and downs all the time when you have lupus but the muscle weakness that you have is very difficult to live with and there may be more that can be done on that score.

You also must never feel that your concerns are less important. They're not in any way!

hugs :hug:

Katharine

 

[KarolH]

as much use as a fart in a thunder cloud

:rotfl::rotfl::rotfl::rotfl::rotfl:

This is hysterical katharine.
When I say something I think is funny and no one laughs but instead looks at me like I have 12 heads I always say,

"Well that went over like a fart in church"!

Then I proceed to laugh at myself a little more.
Your father must have been a joy to hang out with.:wink2:

 

[keebler]

Lyn, my dear departed Dad would have said "as much use as a fart in a thunder cloud"

Oh Katharine I will have to remember that one. It is priceless.

Hi Sal,

As you can see you are very important to us.:bigsmile: We miss you and hope you come back often!

Love,
Lyn

 

[debatat]

Hi Sally, I am pleased that the plaquenil is helping you. It is hard to explain to others what lupus is like. I have the same issues with walking standing etc as you do. It does get annoying at times. I do wonder if a second opinion would help you, your rheumy does not seem terribly emphatetic or understanding!!!! I like Katherines phrase! :rotfl:

I hope you can get another opinion and maybe some better treatment, you deserve it. Keep posting it is nice to hear from you!!!!

Deb x

 

[Salopsally]

Ha Ha you funny lot. xx Laughing away here. Good medicine in itself. Just got back from a day and night away at a Christening so only just read your replies.

Thanks very much to all of you. It is nice to be back too and to read your kind and helpful messages.

Just opened a letter saying I have an appointment at Queen Elizabeth hospital in Edgbaston Birmingham. I did ask my GP some time ago to look into me seeing someone who knows something about Lupus rather than just a normal rheumatologist. Dr Gordons clinic it says so not sure if he or she specialises in Lupus but might be worth a visit. Just panicking now how I will get to Edgbaston in Birmingham for 9 am on a Wednesday morning and I run a Bed and Breakfast lol. I will research that somehow tomorrow. I live in Telford. Should be fun.

Anyway, went to the Christening with my daughter and stayed overnight at my ex husbands and his partners house. Wooo hooo things have moved on a long way since I got divorced about 15 years ago lol. Its all nice and amicable these days and Id not want him back anyway lol. Nice to be all together though with my daughters and my grandchildren. He even offered to tackle a few DIY jobs for me. Very civilised eh lol.

I do still run the Bed and Breakfast but really only my sister and my daughters know how much I struggle at times. They are often on hand to help with lifting and running about things. I haul myself up the steps and up the stairs a few times a day but sometimes it does feel a struggle.

Im not sure what my problem is.. It is a sort of weakness yes. Probably being overweight doesnt help but I see people a lot more overweight than me that seem to run around quite happily. I dread it when i see a set of steps lol. Specially if Im carrying shopping or anything. My daughter says Mum you are getting worse you need to not make yourself look so good when you go to the hospital because they dont believe you lol. Shes very good with me and tries to help me up from seats and out of the car etc. Even my little grandson Alfie 5 says here Nanny take my hand awww. Of course neither of them could really lift me although my daughter says let me take your weight but Im sure you know the feeling you cant even do it if someone tries to take your weight.

Most joints in my body ache at some point but it never seems to stay in one place. One day

 

[Salopsally]

Ooops must have pressed the sent button. Hope Ive not rambled too much didnt get the chance to check it over lol.

Anyway it is really nice to speak to people that understand. I sometimes think.. Do I really have Lupus? Its such a strange elusive thing sometimes. Im sure you know what I mean.

Thanks again for all your help and encouragement.

Luv Sal x

 

[debatat]

Hi I have heard of that doc and they are highly recommended. I believe it is a woman, although I think there is a male one as well, I don't know if they are married. I hope you have a good appt. Let us know how you get on.

Deb x