Things aren't good

I have been trying so hard to stay upbeat and I don't want to complain, but I feel like I'm heading into one of those downward spirals both physically and emotionally and I just came here for a few shoulders to cry on.  I have no idea what is causing all of my symptoms and maybe I don't need to know.  Maybe it's the wild weather fluctuations, maybe it's that I've been really busy and I'm stressed about my son, maybe it's that I've started on my slow prednisone taper, or maybe it's D: all of the above or E: none of the above.  Everytime I start feeling better it seems like something else crops up and I get worse again. Yesterday morning my daughter had a dance performance outside at a fall festival and instead of fall weather, we had temps in the high 80's with lots of humidity.  I stayed in the shade most of the time, but I was in and out of the sun here and there.  We also did a few activities for my daughter's birthday.  I felt myself getting sicker as the day went on and took pain killers to get through the day. Today I'm miserable and have diarrhea again and a headache and a fever.  The thing that worries me a little is that this afternoon my d- was tar black (sorry for the graphic descript ion) and I know that can be a sign of some bad GI stuff, so I will definitely keep an eye on it.  Maybe it's just from the chocolate cake we had for my daughter's b-day. What I need to do is force myself to stay in bed for a few days during the day while the kids are at school and let everything else go.  Then if things don't get better I think it's time to call my rheumy.  I wouldn't think my prednisone taper would be causing this.  I've gone from 10mg daily to alternating between 10mg and 7.5mg every other day. Thanks for listening.  I do realize that I am very fortunate so far with my lupus that even though it makes me feel miserable, nothing I've had with it has been life threatening and I know a lot of you here are dealing with really serious health problems.

I am so sorry you are having this flare. It seems like many of my fibro friends from another site are in one heck of a flare too. I know you are ill but just because your labs may not show much does not mean that you are not ill. I too, with my labs show good but I show symptoms out the wazoo. You also take care of your family, and one sick little boy. As I am sure you do your best and too much, pamper yourself with lots of rest, good movies in bed, hot baths or whatever you need to do to get better.

I know the doc is trying to cut your prednisone down but have you spoken to him about going down maybe 1/2 mg at a time until your body can adjust to the change?

I am sorry I have not been here, as I have been on bedrest for a month. I get up and move and my body rebels.
I just want you better, all of you as I miss you all.

Leta

Hippi:

Honey I'm sorry you're having difficulties. The tar looking stool is something to be worried about, just what you need is something to worry about on top of things. Please make sure you contact you doctor regarding this. I'm sure you enjoyed your daughters recital and b-day but like Rosie said you most likely cooked yourself.

Know that I'm here for you whenever you feel like you need a shoulder to cry on. I'm always here for you honey. I know my email isn't listed, but if you'd like to have it I'll make arrangements to get it to you. Sometimes it just nice to chat with some one and I'd more than be willing to give you a phone call at anytime.

I hope you've had some rest today and awaken in the morning feeling better. I agree that you should just rest once you send the kids off to school. The household things will be there for another day. Try to remember spending a few days resting is better than pushing yourself and making yourself sicker. I truly understand how you feel and I wish I could do more for you. Just know that you're in my thoughts and prayers everyday.

Hugs to you,

Barb

Hi, Hippi. ((((Hugs)))) I'm sorry you are feeling SO poorly. You do have a lot going on at once. Aside from the regular stress of your disease and the worry over your son, it sounds like there's more in play. I would have to question my rheumy about a drop of 2 and a half mg (even though it's every other day) being slow. I've read that when you go below 10mg prednisone, you should only taper 1mg at a time. I'm tapering now from 9mg and I was so concerned over that pain in my chest coming back, I asked my rheumy about doing the taper to 8mg every other day. He said that was the equivalent of taking 8.5 daily, but he agreed with no problem. (I've already had 2 EGD's trying to find the cause of that pain with no success.) So you might consider calling your rheumy and try to work out a slower taper. Also be sure to advise them of the extra stress and worry with your son right now. Stress while tapering can cause problems before you even get started. I also agree with what others have said about the black stool. That could be big problems. I hope you will call your rheumy and see what they advise. Please do rest when you can, but do consider giving your rheumy a call. Take care and keep us updated.

Oh ((((((Hippi)))))))), bless your heart! You sound so miserable. I am with the others about seeing your doctor. Are you on any anti-d's? I'm glad you came here to talk about what your going through. I know you can't wait for the weather to cool off and some sun to hide behind the clouds. I applaud you for making it through your daughters program though. I was reading what you wrote and could invision every muscle in your body hurting. Like Lynnwood said may this isn't the time to try to decrease the pred. You might want to wait until the weather changes a little. Sleeping when ever you can is always a good idea. After all you tell me that all the time! Please don't wait too long to see your doctor. My prayers are with you and your son. BTW I don't think you ever complain so please don't worry about that.

love ya

carol

Hi hippi,
You have way too much going on, hun. I'd say I agree that now might not be the time for a pred taper or if you do, you need to do it in much smaller increment at a much slower rate. I also think seeing the kids off to school, taking some nice juice to your room and resting is a super idea. At lunch, get up and have some yummy fruit or yogurt...whatever sounds good and some more juice, tea or water. Then back to your room with you. Set the alarm for when the kids are due home.

Plan dinners that take minimal preparation or ones that hubby can do while you spend some time some time with the kids, helping with homework, visiting, whatever. Give Josh some special attention with his aches and pains with some heat or ice whatever helps him. Then read with your little girl. Eat...bedtime. Talk with hubby. Bed for you.

Oh, aren't I bossy??? As far as the stools go, see how it goes for a day or two. I've had the same thing, only to see it go away. If it persists, then by all means call and tell them how long it's been going on and that you want to see someone ASAP.

Okay, after this long post you're probably exhausted. OH, another thing to consider is an anti'depressant. I know you've said that they don't agree with you. There are several new ones out. Tell your doctor which ones you've tried and the trouble they gave you. Ask if there are any others that are chemically different or work in a different way that you might try. With all you have happening in your life, this might help you a lot. (I know mine does!)

xoxo emmie

Hi Hippi, I just wanted to check in with you and see how you were doing today. Did you contact your doctor? Please keep us updated. We all love you very much!

love ya

carol

Hippi,

I'm sorry I haven't been here for you but I think you know I've been thinking about you. I'm so relieved to hear you say that you aren't going to taper right now. I think that's a great idea. I sure do understand how much you want to get off prednisone because I feel the same way, but it's just not worth tapering while you're in a flare. I thought I was over my 3 year flare until I awoke yesterday and the steamroller had rolled over me again. Take care of yourself and let's just rest till we feel better. I loved all of the comments and suggestions you got.

You're in my thoughts and prayers Hippi,

Love,

Pat

I'm glad you are resting Hippi!!! Keep telling yourself that the more you rest now, the more available you will be for your family later. MONTRA The more you rest now, the more available you will be for your family later. Emmi's post was perfect!!! Kids remember that little stuff and story books in bed are great too. More tea for your sis . . . and ice and lemon if you want!!! Blessings!

(((Hippi))) I'm so sorry that I am now just seeing your thread. I have not been on too much for the past week so I got so behind and I'm finally catching up. I am so worried about you. You have so much going on right now with everything and it sounds like you and your body is very overwhelmed. I feel for you because I remember how hard it was with one young child and you have two to care for and one that is having a hard time himself. I wish I could be there to help you out.

I hope that you haven't had any more black stool incidents. Blood is a possiblity but I hope that maybe it was just discolored from meds (I too had the Pepto scare). Big hugs to you Hippi... please get plenty of rest!!

Hi Hippi:

Just a quick note to say hi, I'm thinking about you and hoping that you're feeling a bit better. It sounds like you're trying to get extra rest. I hope that this flare settles down really quickly for you. I'm so sorry that your stomach is so bad. If it's no better tomorrow I hope you'll call you Dr.

Lots of hugs, and prayers coming your way.

Love,
Barb

I just wanted to let everyone know that I'm slowly starting to feel better. I've been resting a lot and doing very little - my body wouldn't let me do much else. Being back at 10mg of prednisone everyday is helping and my pain and my diahrrea are getting better. Of course the fatigue is hanging on, but I can deal with that. I think I must have had a really bad reaction to the sun when I was in it for my daughter's dance performance - I was in it longer than I realized. Either that, or I had the flu which is also possible - I had a lot of chills and headaches too. I'm just relieved to be starting to feel better. Thank you again for all of the support and kindness - it's one of the things that keeps me going. I don't know how much I'll post tonight, but I will at least read some and try to catch up. Lots of love, Hippi