HealingWell
Search Close Search
☰

For better or worse?

Support Forums
>
Lupus
for better or worse
I feel better - 18.2% - 2 votes
I feel worse - 63.6% - 7 votes
I'm holding my own - 18.2% - 2 votes
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 12/1/2010 5:29 AM (GMT 0)

Hi everyone. First I know many know me and many don't. I used to come here every day and shoot my mouth off about something. I really looked forward to hearing from everyone. It's what made my day. Anyway I feel I need to apologize to everyone. The past 2 years I feel like I have gone down hill and my energy level is about a 2. If I try to do any light house work I am good for about 15 mins and I have to lay down. I think about you guys all the time but just the thought of getting on here makes me tired. Do you ever get exhausted just thinking about doing something? So anyway I was wondering if you might tell me how you are feeling. I have prayed for a few days of energy a couple times a month but it just isn't happening anymore. So do you feel you are getting better or worse or the same since you started getting sick?

thanks for sharing

blessings

carol

Posted 12/1/2010 5:51 AM (GMT 0)
Hi Carol,

Lately, I feel worse. Probably all the storms lately. Hope that you feel better, soon, Carol. The holidays add so much stress to our already over tired bodies. Rest and feel better!
Posted 12/1/2010 7:06 AM (GMT 0)
I definately feel worse since being diagnosed. I have some good days and alot of bad. I'm on more medicine. Praying for it to go dormant. I spend alot of time in bed these days. Would love to be able to do a portion of what i did before I got sick. I pray you feel better soon. One thing I have learned is you learn really quick how life altering this disease is. I don't like to plan things anymore or accept invitations to things because i don't know if I will be able to go that day and if I make myself I end up feeling worse for longer. I'm soo sorry things are so hard for you now. May God Bless yo and Keep you!
Posted 12/1/2010 10:27 AM (GMT 0)
Hi Fran and sonyalee, Fran it's been awhile. Thank you both for answering. Fran I assume it's your joints bothering you? You're right christmas is stressful. I've done most of my shopping already but I do it on line. Two reasons One I would be exhausted and the other there is flu going around  I'm sure I'd catch it.

Sony, I know what you mean about not making plans. I try to make everything in the afternoon so I can sleep as long as possible. But if it is somthing I have to do early I take my shower the night before and have all my clothes sat out. Then I get up 3 hours early

so I can rest in between getting ready and putting on make up. Sometimes I'll feel good and  invite someone over a to dinner on sunday. By the time sunday rolls around I have to call and caceal and tell them to come pick up the pork ribs since they are thawed out I would never get them done before they go bad. Like I said in the first post  I used to have some really good days mixed with bad now I only bad and really bad. with a couple of good hours in there somewhere. I just can't believe it's come down to a couple of good hours once and awhile. My spoons are getting rusty and beat up from the garbage disposal!

well thanks again and as always I will be praying for ya

 

Posted 12/1/2010 2:38 PM (GMT 0)
Good Morning Carol,

I'm sooo sorry to hear that you are having a rough time of it.  I know you have really been through alot this last year just by reading your posts and you have really helped alot of people with this horrible disease.  For myself, I have both good and bad days and I try to focus on the positive things when I am having a bad day, but yes, it can be so frustrating to all of us when we have good intentions to accomplish something one day and our bodies just won't let us.  I used to be so active, walking pretty much every day with my dog and doing yard work, playing the piano and just every day houshold activities.  Now, it seems like my mind is in the right frame, but my body can't accomplish the basics.  I taught piano for years and truly enjoyed it.  We have 2 kids in college and although we do okay financially, I would really like to help my husband out with the expenses more by going back to teaching, but I know that many days I'll wake up and I can't get my fingers to move like they should and you can't teach piano that way, so I'm afraid to commit to it.  It just makes me mad and depressed.  I want to know who stole my body and gave me this horrible disease.  I have been going through this for 3 years now and wonder many days what the future brings for me and my family.  My fear is that I won't live long enough to see my kids get married and have grandchildren and if I do, to be able to do things with them like I want to.  I remember thinking my dad's mother was old and feeble and never did anything with us kids like my mom's mom did and I don't want my grandchildren to think that of me.  Well, I'm going to get off my pity pot and try and finish some christmas decorating and shopping today.  I hope you all have a somewhat pain free day and if we all keep supporting each other, we will do just fine. What else can we do?

Hugs and Angels,

Lynnette

DX - sle and carpal tunnel syndrome

RX - plaquenil, prednisone, lisiniprol, etolodac, folic acid, hormones, vitamins, flexeril when needed and now I have to find a new pain med cause they took my beloved darvocet off the market!!

Posted 12/1/2010 10:53 PM (GMT 0)
Boy - ditto on all counts.  It is both comforting and discouraging to hear.   Lynette - I've been in this a little over 3 years as well, and relate so well to your feelings and frustrations.  I'm also afraid by the time there are grandkids (both kids got married in the last couple of  years) I won't be able to fully participate with and enjoy them.  I had both kinds of grandmother's also - and I know which one I don't want to be.

I am still so shocked and disappointed at the number of limitations that continue to impact my current life - how many days I just don't feel good - how often I dodge an invitation for lack of energy or the dread of having to cancel when the day arrives.  How even the slightest bit of added stress seems to pull me down.  How non-productive I feel.   How the mirror tells me I'm aging faster than I oughta.  I miss my old self and all the interests and activities that kept me busy and connected. I miss my creative energy most of all.   And when it does show up - finding the physical energy to match it is quite a challenge.

Carol - I'm very sorry you aren't feeling better - I know you've been through extremely difficult times this last year.   I have a lot to be thankful for - and I still have hopes of finding a better balance - but I'm not there yet.   The upside is having a much better understanding of the blessing and importance of things I used to take for granted. 

Blessings and better days to all,

Lucy

 

Posted 12/2/2010 12:07 AM (GMT 0)
I feel better since I was diagnosed last September, but I almost feel like it's the calm before the storm. Lupus came on very suddenly and very hard. Within a matter of days I went from feeling completely fine to not being able to move my hands or have energy to get out of bed. But after a year on Plaquenil, my joint pain is almost gone. The only complaint I have is most days I just don't feel right. I don't know how else to describe it. Maybe it's a mix of dizziness and fatigue, I'm extremely forgetful, I don't know how else to describe it but I just feel off. But I read everyone's stories on this board and keep you all in my prayers, but I see how lucky I am and hope this is the worst my lupus gets. I almost live in fear that I won't be able to work or have kids (I'm 25). Sometimes I feel like I'm just waiting for lupus to take over my life. :(
Posted 12/2/2010 2:40 PM (GMT 0)
Oh boy Lucy, you hit the nail on the head.  It's hard enough growing older with the usual aches and pains but for us it's just ten times worse.  I hear you about looking in the mirror and seeing the changes.  Sometimes they seem like they just come overnight.  I used to have pride in myself about being organized and in control of things and lately I feel like I'm lucky just to accomplish basic tasks like laundry and cooking a meal.  Today I woke up in a flare and I know it's pretty much weather related.  I live in Mississippi and the weather has been up and down temperature wise and with storms.  My carpal tunnel has now kicked in again and I can't get into to see my orthopaedist until December 22nd so now that means I will have many sleepless nights which just creates my condition worse so the holiday season will stink because I won't have the energy or the physical capablility to do the fun stuff.  I'm soooo tired of it all!!  I know that there are many of us that have it worse than me and I try to keep that in mind when I feel sorry for myself, but it is hard some days to be positive when you don't know what the future may bring.  I thank god that I found this website to come to when I need the support and understanding of others who are in the same boat.  Don't get me wrong, my family is very supportive, but I'm sure they get tired of me complaining of my aches and pains.  I know I did when that's all my grandmother would talk about.  Anyways, thank you all for being there and giving me and others the emotional support that helps us face each day, good or bad.  I hope you all have a good day!

Hugs and Angels,

Lynnette

Posted 12/2/2010 8:45 PM (GMT 0)
I everyone, I've read all your responses and thank you so much. I will write more soon but I just had a blood draw because either the pottassium is to high or to low I have terrorible cramps just typing on the computer. but I gained 25lbs in 3 days and they had to put me on tons of lasix and potassium. Now I am supposed to just lay back and put my feet up. My blood pressure was up to 174/82.

I havn't forgotten about you all though and can certainly understand what you are going through. Please give me a day or two to get over this dag gum muscle cramps and I will get back to you.

love and blessings

carol

Posted 12/5/2010 4:37 PM (GMT 0)
Hi lynnette sending you huge hugs. I'm sorry about this xxxxx disease taking your piano away. It's self and just wants everything. I loved camping and there is no way I can do that anymore. I can't plug my o2 into a tree out there. and I was an advid horse riding and the portable o2 scares them. I road quads (4-wheelers) up in the mountains again shaking up oxygen bottles isn't a real good idea. All though I could face it from back to front and set the o2 on fire and see if it would take off! scool smilewinkgrin . Just a thought. Hang in there we have more strength and courage in us then most people. We didn't ask for it it was thrust upon us. But if we are still here every day then we can be proud of ourself and I wouldn't bet against you being around for your grandkids graduation. hope your christmas shopping is  going well.

love a blessings

carol

Posted 12/5/2010 4:59 PM (GMT 0)
Hi Lucy, wow did you just tell my bio or what. I feel so bad for always saying no I can't go. then I get remarks like carol you wouldn't be so depressed if you got out more. Well yeah that's true. The fact that I can't get out more if very depressing. and yes flip a coin as to what tomorrow might bring. Hang in there and tell your kids to get going on them grandbabies. Not because you have a time limit but because you can spoil them and send them home. Now that's one of the biggest pluses for being a grandma!

POSSI,Yeah it is true what they say about oklahoma. If you don't like the weather give it 5 minutes. This 19 one night and 70 the next day is hard ya just can't get acclamated to it. How's the cardiac rehab going? they got ya on treadmills or (dreadmills)? I have a whole room full of gym equipment which works wonders when I run out of hangers.

Hi EBET, It's always hard to hear of young people getting this lousey disease. I know about waiting for the other shoe to drop. since it can attack anything at any time. While you are right there are people that have a hard time having children there are also plenty of women that can. If I was right where you are right now I think I would go climb a mountain and ride a bull or see the country with your best friend. None of us know how much time we have but this disease has shown me that life is fragile and fleeting and you should grab it up every day and live it to the fullest.
sending hugs and prayers
blessings
carol
Posted 12/5/2010 7:50 PM (GMT 0)
Hey Carol,

Thanks soooo much for the [[[[ hugs]]]].  One can never get enough of those.  You always have such a good sense of humor and have the knack to lift us all up when we are having bad days.  I am blessed with a very supportive family and great friends (as well as all of you) and I hope that every one of you have pain free days to enjoy the Christmas season in the true spirit of what it is all about, spending time with family and friends and celebrating the birth of Jesus Christ.  Love to you all. Lynnette

Posted 12/5/2010 8:45 PM (GMT 0)

Hi! Everyone,

No apology necessary, we, of anyone, understand best. I feel worse. Since July, I am no longer working, and I guess I thought I would feel lots better. My SSD starts in January, thank God. At least I know I made the right decision, I gave up a job I loved and wanted to keep, but simply was too often too sick to function safely or in my best interest. And, on my better days, I can do a few necessities, like kill a dust bunny or two, or quilt or read abit.

hugs,

suetoo

Posted 12/7/2010 3:54 PM (GMT 0)
Hi sue, thanks for responding. I am so sorry that you had to quit your job but I'm glad you are going to get your disability.. I don't know what I would do without mine. My dust bunnies just run around laughing at me. I have to go grocery shopping today and I am so not looking forward to it. I used to like shopping. Now even for christmas I am doing it online. Now the weather is making things worse. At least I know I am not alone and I feel bad complaining when others have it so much worse then I do. Geeze I'm sorry I'm being grumpy today. I really need to take a shower maybe I'll feel better.

When you get your first check go do something really good for yourself. and take pictures! wink

love and blessings

carol

Posted 12/12/2010 4:25 AM (GMT 0)
Carol, I haven't been here much either. I understand SO well what you mean by just thinking about getting on Healing Well exhausts you. I have spent some time on other forums but it's really sporadic, because I'll have a bit of energy and will try posting then after several posts I hit the wall and disappear for another week (or month).

I'm so so sorry to hear that you're going downhill. I feel that I am too, although my vertigo seems better but lots of other things are worse, like my energy level and eyesight. Plus my Raynaud's is flaring and I'm having trouble with my feet.

You're in my thoughts and prayers....hang in there hon!!
(((((((((((Carol))))))))))))
Posted 12/12/2010 5:03 AM (GMT 0)
I'm new to this so be patient.
I was diagnosed with Lupus about 30yrs. ago.
When I went to a support group I realized how lucky I was in my degree of problems with Lupus.
It was very active for about 2 years. Joint involvement, swollen glands, fever and exhaustion.
I learned to take very good care of me. Get plenty of rest, try not to be stressed and where a hat in the sun and sunblock. I am very active in the sun, golf, tennis, swim and walk the dogs.
I always where my hat and swim in the shade.
I went on Plaquinel for the first time about 4 months ago, because I was feeling like I was getting sick again, joints all swollen and exhaustion. Felling much better on the drug, but now I am covered in a rash on my legs, arms and chest. The Dr. thought it was from the sun, but I am beginning to believe it is from the Plaquinel. I also have this cold that is going around and can not get rid of it, going on two weeks. And I have great periods of exhaustion.
I am very involved with a charity organization, the local camera club, and the community association. I am on the board of all three and under a lot of pressure this time of the year.
Having a large home and no cleaning help at the present time, I think I'm pushing to far.
Just found this site looking for Plaquinel rash. So it has been very helpful in my diagnoses
that the drug is causing the rash and not the sun. If anyone else has this rash from the drug please reply with your symptoms. Thank you.
Posted 12/12/2010 2:18 PM (GMT 0)

Hi! Everyone,

Happy Christmas and wishes for lots of good quality rest for all yeah When I am really symptomatic, one of the first signs for me is a deep pink blush across my nose and cheeks, looks like a sunburn, or as if I have a fever. When I am first out in the sun, my rash blooms like a mottling crocodile, a warning to get out of the sun, and if I don't, I get a raised red fine scattered rash of bumps that itch like crazy and I feel like I am crawling out of my skin. After I started plaquenil, I noticed brownish pigmented splotches on my forearms, from a quarter to 3/4 of an inch in size, that didn't itch and don't ever really go away. My rheumy said it was "most likely from the plaquenil" I am blessed to be very med tolerant, and I felt immensely better within weeks of starting the plaq. and then 3 months later when I got to the neurologist, the neurontin reduced my neuropathic pain immensely. My rash is always sun triggered, and sunblock makes it worse, so I simply cover up and got a long sleeved jacket from coolibar. I am buying a swimshirt asap. I love to swim and unfortunately the ocean is dangerouse when the sun goes down. I was a tourist in the surf one time when a local man stopped with his small son and explained to me that predator fish come into shallow water, (like barracuda) to feed on smaller fish once it gets dark. Scared me, true or not. Hotel pool here I come.

hugs,

suetoo

Posted 12/12/2010 2:28 PM (GMT 0)
Thank you for replying. I got the brown spots also thought they were just age spots, but I did not have them until I was taking the Plaq.
✚ New Topic ✚ Reply