[juniperfly]

I am new to this board and just feel the need to chat with others that are dealing with lupus. I have not been officially diagnosed with lupus, but have been told I have an autoimmune disease. Chances are pretty good for lupus as my mother has it also. As my doctor told me at my last appointment, we are waiting for the other shoe to drop so she can make it official.

Well, it may have dropped now. I am running a low grade fever almost every day, feeling very tired, and seem to have the classic rash on my cheeks. All this may be a flare up due to my pregnancy, but boy am I exhausted. I have a six year old boy, a fifteen month old girl and another on the way, so down time is non-existent. I think my husband is tired of hearing how tired I am. I haven't told many of my friends that I have this problem and even the ones I have told, they just don't get it.

People ask if I'm excited about this baby or what am I doing to get ready and the truth is, I just need to concentrate on getting through each day. I don't have the energy to do more then that. I can't actually tell people that of course, so I just smile and say I'm busy with the two I have.

I guess I just need to vent to people that understand.

Jen

 

[Katharine]

Hello Juniperfly and a warm welcome!

Wow, you do have a lot on your plate at the moment. No wonder you are exhausted!

It sounds like your doctor is following you up well and that's great to hear but obviously you don't have much relief from tiredness etc. I presume it's also a question of knowing what meds they want to give you when you're pregnant.

Your husband and others will only partially understand with time. In fact, I don't try explaining to most people as they just couldn't get it. I tell most people I have joint problems but that doesn't quite cover the tirendess or why I've been off work for six months :lol: It did explain why I had to close the aikido club and couldn't do classes any more!

I'm sorry I can't help more with problems when pregnant as I had most of my problems afterwards but I hope you enjoy being here and find lots of support,

:hug:
Katharine

 

[melanie ann]

jiya, and welcome..

you do have a lot on your plate don't you...im in the same boat as katherine,my problems started after my kids, but there will be people on here that can help....all i want to do was say HIYA.....i have found this site very helpfull, good advice on just about everything, as you can talk about everything....my last conversation was about bowels :rotfl: hope that doesn't put you off...
i hope you have all the support you need at home, feel free to vent rant scream laugh and cry.....

take care of your self

 

[karen.w.]

hi jen

:welcome: to the forum

you have come to the right place to vent the forum is very supportive & it really does helps to talk to other people who truly understand.

I am sorry to hear you're having problems,I hope things settle down for you soon.I hope you can manage to get some rest!

I have had 2 children since my lupus started although I was wrongly diagnosed with rheumatoid arthritis at the time.
thankfully for me though my symptoms almost disappeared whilst pregnant which made it possible for me to come of my meds.
however I did suffer with the severe form of morning (day& night!) sickness though & I had on-going water infections,fainting & anaemia.I now assume these were related to the lupus
I also remember them being concerned with anti-bodies & at one point asked me if my hubby was the same father of both children not sure what that was all about!:hehe:

oops sorry to ramble on about myself jenn!
I hope things improve for you soon & I hope you will benefit from the forum as much as I have
hope to chat soon
take good care...karen x

 

[juniperfly]

ARG! I *thought* my primary care physician was going to be great about managing my as yet unidentified (but probably lupus) autoimmune disease. I called this week to update her that I have had a low grade fever for a while now. First of all, no one called my back, until I called the office again today. And, her response was "it's nothing". I'm sorry, isn't this classic lupus? A low grade fever (99-100) for over a month?

I am NOT going through what my mother went through, not getting any answers or treatment for years. I called a local Rheum myself and made an appointment. Of course, they aren't seeing anyone until MARCH. But at least I am on the schedule.

Jen

 

[Maia]

It certainly is classic for me. Mine tends to be right at 100 though; I think very few doctors would take 99 seriously (even if your normal temp is 97 or 98 as my normal temp is...). It's amazingly frustrating to be dismissed by doctors because I'm sure the fever is the least of your symptoms, but it's one that is directly observeable so you'd think it would merit more attention/concern than it has so far!

Good for you on making that rheumy appointment; it's certainly needed.

 

[sadieone]

Hang in there Jen,, March will be here before you know it.

 

[b.moonster]

taking care of yourself

Hi Jen
regardless of what diagnosis you get, it's not the main issue at the moment, your main issue is getting help taking care of yourself; that means asking for help, with the two children you have already. When are you the most tired during the day? could someone take your youngest off your hands for a few hours then? I assume your oldest is at school, so if you could get a couple of hours to relax, take a bath, go into a darkened room etc. and try not to get too anxious about wheather its Lupus or not, whatever it is it, it's clearly causing you real difficulties.
And last of all your husband, perhaps you are sensitive to the fact you feel you complain when you are always tired, maybe he's not fed up with it, I certainly hope not. Could he not take over completely for at least an hour in the evenings, take over bedtime routine. Rather than saying you're tired and carrying on...we are all guilty of this. Say 'I am too tired you will have to do it please'.
You need help, you have to ask for it, you need to concentrate on taking care of yourself and then you can help with caring for your family.
Good luck we are all with you and we all understand
Bx:worried:

 

[confused1]

Hi Jen, and welcome to the board. This isa agreat place for venting, talking and finding others who know just what you're going t hrough.

I think Brenda's advice was perfect. You need help. It's just vital. Even if you were "only" normal tired, with two young children and another on the way you would need rest and assistance with the house. And a break on a regular basis. Maybe your husband could read some of the information on this site. I especially recommend the "Letter to Normals" that you can find with a search here. It might help him understand what you are going through.

Most of us have been taught since childhood to gut it out, do for ourselves and don't ask for help. When you have an autoimmune disease, all bets are off. You know that from watching your mom, I'm fairly certain.

So, take Brenda's excellent advice. Come back and chat with us anytime. And make sure you are prepared for the March appointment with records, lists of symptoms and other information you need to take with you.

Hang in there.
Sunny