[Hatty]

Hi there

May I just have a little weep on here? It is so good to hear from people who are in the same boat. Most of the time I manage to feel on top of my lupus, but having just got out of one flare I'm suddenly in another one and am just feeling so awful. I'm having to make all these complex plans to get my two children (2 and 4) to school and pre-school, and it took me 30 minutes to get them downstairs this morning to give them breakfast as I literally had to lie down after every few steps. I feel so bad that they have to see me like this, help me to lift the milk carton because it hurts too much. My husband is lovely but really busy, thank god for friends but it's hard to talk to them about what it's really like. I'm so scared that my health is suddenly deteriorating - I've just become photosensitive, it seems - and that this is what it's going to be like. I just can't see how I can cope with daily life if I'm this bad. I normally manage to do so much and live a full life as long as I rest and take my plaquenil and celebrex. I'm hoping that this is just a blip, that all will be fine again, but sometimes I can't be all positive and jolly and it's all just too much, I am scared and it hurts so much. No one really understands and I can't really be honest with them because it sounds a bit over dramatic and depressing.

It will pass, won't it? And I'm not the only one who gets scared by it all, am I? Sorry for rant but I do feel better already...

xHatty

 

[sam101360]

Hatty:

I am so sorry you are having a rough run (((HUGS))), this is indeed the place to come weep, whinge or rant!

You are not alone with your fear, but don't letit conquer you!

I would suggest that you give your doctor a call and explain the situation, perhaps he can add something to you drug coctail to get you through this rough patch.

I think the plaquenil and/or celebrex may increase your sun-sensitivity, make sure you put on sun-block higher that 40 anytime you need to bein the sun.

I hope you get this worked out soon.

Stephanie

 

[Katharine]

Hi Hatty,

Yes, we do all feel scared at times and I'd say that we all get that terrible feeling of being totally overwhelmed by it all.

I would agree that you definitely need to contact your doctor. If I understand correctly you are "only" taking plaquenil and celebrex. The only thing in that mix that is disease modifying is plaquenil and I'd be wondering if it is really enough for you at this time. No-one, no matter how ill, should be having so much trouble taking a few steps or lifting a milk carton. It is in no way "unreasonable" to expect a better quality of life.

We often hesitate to "bother" our doctors but we have to remember that it is not normal to live like that and that it is the doc's JOB to help. I know that's not easy to do for some people but it can be learned (I'm living proof :lol.

Do keep in touch and tell us how you're going,
Here's plenty of hugs to help along the way,
:grouphug2:

Katharine

 

[greenhaggis]

Hatty,

Please get to the GP for some advice! It sounds to me like youre flaring and are in need of some extra meds!

When ive been suffering like you ive been given a short course of prenisolone (steroids) to get the flare under control!


Lots of hugs!

 

[flutterbye]

((((Hugs))))

It is ok to feel overwhelmed and scared and weepy, and it is so good that you can say that's how you feel, and to get support from people who really and trully do 'get' it.

Reading your post made me think of when my kids were that age, and just how hard things were, it isn't easy even before you add lupus into the equation. I can also relate to lovely but busy husbands and friends who don't really get it.

It really would be worth talking to your doc about what a struggle it is at the moment, it really does suck when it is this hard to manage, if it is a blip for you at the moment, then having someone who knows what the blips are like, and also finding ways, drugs and support and self help, that will get us through the blips is a good thing, and an ongoing process I think.

With love and hoping for better days ahead xxx

 

[lin]

(((((((((((((((Hatty)))))))))))))))))) yes we all feel scared at times, ad since you are flaring, its worse i wish you better days to come


sending you a hug Lin xx:there::kiss:

 

[onetay]

Hi Hatty,
It sounds like you need some help. I am not sure where you are located but there are a few things you could do. I also am not sure of your money affairs. College kids often can use extra money and are will to do a few hours of work for a few dollars. I would also check and see if there are programs available to offer you help with the kids. I would be getting touch with my doctor and let him know that this is going on and see if they can get things under control. Lupus is a scary disease to say the least. We are here if you need us.

 

[lazylegs]

Hi Hatty,

I am sorry to hear you are right back where you started. Back to back flares would make anybody feel weepy. Definitely see your doctor, it is obvious something needs to be done to get the disease more under control.

Stephanie was correct. Celebrex is associated with sun and ultra violet light sensitivity. You might want to discuss the pros and cons of using it in light of your recent problems.

Take care,
Lazylegs

 

[Douglas]

Howdy Hattie,
There have been moments, thankfully rare, when this patient is afraid he will die; when it gets worse, afraid he won't.
I don't know whether this will help or not but I like to "run the movie to the end". What I mean is that I spin the worst possible outcome and then, when things work out, they cannot be as bad as my imaginary version.
I pray too!
Douglas+

 

[Hatty]

Thank you so much for all your kind replies. It is so nice to feel listened to and supported without feeling guilty (as I do if I whinge on my lovely husband too much).
A lot of you have said that I should see my doctor, but I have never tried to see my rheumy except for scheduled appointments, I've never dared try. To be honest he would just look at me and say what do you expect me to do? I have once seen him in the middle of a flare after the birth of my daughter and he just shrugged at me. He even moved my appointments to once yearly instead of every six months last time I saw him. I don't really think he believes I have lupus properly as by the time I saw him I'd been on plaquenil for 1 year and was relatively ok, and he always says my joints aren't swollen. Grr. I have an appt at the london lupus also but not until november . My gp I don't think would be much help, but I'm going to go and see him anyway. I reckon I can walk that far today if I try very hard! I don't think he knows much about lupus. Do you guys tend to get pred to help with bad flares? And do you really think the celebrex might be making it worse? It is the only drug I've found after a lot of attempts that really helps with the pain without making me sick, so I don't want to give it up too easily!

Anyway, thank you again for all your kindness,

xHatty

 

[Joandublin]

Hi Hatty

Im very sorry to hear how awful you are feeling and in so much pain:worried: I just couldnt imagine what it must be like trying to look after two little ones as well :worried:

I think a visit to your GP is a very good idea at this stage. To answer your question about pred, yes it is quite common to be on a short burst of pred to help with flares.

Given your history with your Rheumy then I think you have no option but to go to your GP and ask if he would prescribe a course of pred to see if it will help. Be very specific about how debilitating your pain and fatigue is, e.g. tell him how long it takes you to get down the stairs and about the milk carton incident.

If he is concerned about prescribing it for you then you should ask him to make an intervention with your Rheumy, i.e. telephone the hospital for an urgent appointment for example. I can imagine that you dread seeing that particular Rheumy again but you might have no option.

I remember Cath mentioning a long time ago about her Rheumy and I wonder if it would still be a possibility for you to change and get a new referral? I could root out that old post for you if you cant find it.

When you go to see your GP just be determined that before you come out you will either have a treatment option prescribed for you or at the very least a 'next step' plan. You have to find the strength to let him know how bad things are and that you are determined to help yourself and not just fade away into the background and end up not being able to look after yourself or the children.

The very best of luck today Hatty. Take a deep breath, go see that doctor and be very persistent with him. Dont be too quick to give up the Celebrex by the way. You may find that the side effects are worth the benefit. I started taking Celebrex a few months ago and it has helped me quite a bit. Put it this way, on the two occasions when I forgot to take it I was in agony by the end of the day. I wouldnt like to have to give it up.

All the very best and let us know how you are
Joan:rose:

 

[LolaLola]

Dear Hatty,
I am sorry to hear you are so poorly. I know what it is like not to be able to lift even piffling little things up. Steroids would certainly help, and as you don't usually have them you may well be able to see a difference after the first couple of days.

If you are not claiming DLA, I wonder if you would consider it. An award of DLA makes life easier even if you just use it to pay for the odd Take Away dinner, electric can opener etc.

Regarding the photosensitivity, I am very photosensitive. At this tme of year when it is just starting to get a little lighter in the evenings and most people are cheering up, I get gripped by near panic at the thought of another summer.
I find the anticipation worse than the Summer itself. I don't know if this is what you are feeling at the moment.

Photosensitivity can be variable-it may be you will improve.
Is there no way you can get to London sooner? In my opinion it would be the most effective way for you to get help, and even your local Rheumy may be more co-operative when London is on board.
The fact that your joints don't necessarily swell means nothing. Many people do not have swelling,or if you are smallish like me, you may swell and still look average sized.

If I can help in any way I will.
x Lola

 

[cad]

Hi Hatty,
I really do feel for you! :hug:

I am a mum of 5, my youngest is not at school yet, 20 mths and absolutely full of it too.

I have days exactly like you are describing. In fact I started again that yesterday and am bad today.

I ususally call my gp for a telephone consulation as I can't get out of the house, but if you can I would go and see him. Explain and give examples like the stairs and the milk carton, then it is very clear what your limitations are. If you are having regulary flares like this then your gp should conatct your rheumy and look at having yor mediaction reviewed and perhaps adding something else in, in the long term to stablise things.
When I am like this mine will usually give me a short course of steroids, which I can't have now cause I'm already on them!!

I think also if you are like this regulary then you should persue disabilty. The process is not easy by any means but it would be worth it in the end.
You could discuss this with your doctor also.

My husband actually change dhis working hrs after I claimed disabilty in order to be around to help me in the morning with getting the kids ready and then again after school. The disbilty can open up other doors for other things like getting some help in at home, the extra money could help with a cleaner or in some other way that could take the load off of you a bit. It is hard to admit the need for help as a mum, but if things are that bad then it's very hard to carry on as you are for any period of time if this is a regular occurrence.

I think is essnential to talk to your gp about meds if this is an ongoing thing as it really impact on quality of life.

All the best of luck to you. :there: :tinker:

Take Good Care

Cassie

 

[Hatty]

Hello all you lovely supportive people
Well I just went to see GP (stand in lady, very nice) and she says I have strep throat which is why my flare was so bad this time. She has given me antibiotics (which is quite unusual in holland, so she is definitely nice!). She said she expects that I will feel better after 24 hours (and indeed I am already better than yesterday) but that if this persists I should come back.

So hopefully things will be on the up! And yes, I might get braver with my rheumy and actually contact him next time I have a flare....

Thank you again,

xHatty

 

[Joandublin]

Thats great news Hatty! What a lovely doc, eh?

I hope the anti-biotics do the trick but its great to know you can go back in to her if you are feeling no better.

Here's to a whole heap of energy for the days ahead.

Luv n stuff
Joan:rose:

 

[lazylegs]

No wonder you felt so miserable. I hope you continue to improve.

Take care,
Lazylegs

 

[cad]

Hi Hatty,
well done and good for you!!
I really hope you continue to feel better and good luck for the future.

Take Care

Cassie

 

[elle-co]

Hi Hatty,
Glad you are feeling better. I hope the anti-biotics continue to kick in.
Take care and get lots of rest

Hugs
Elle x

 

[flutterbye]

I am glad that you got to see the doc and she was nice, hope that things get much better for you quickly. Take good care of yourself

((hugs))