Does It Bother You?

I want to ask some of you about something that I wonder if I am alone in. But first, I want to share some positive things.

I'm very proud of myself for being involved in life in the last three months or so. In October and November, I went to a Renaissance Fair, a super big car show, and an air show. These are big because they took being outside in the sun (I took precautions, to be sure!) and a good deal of physical exertion, more than I'm generally used to these days (I made sure to rest and sit down when I needed it).

But even bigger for me was one of those 'first's that we don't look forward to. During Thanksgiving, while spending it with family, the whole group wanted to go see a christmas light display that the local zoo had created. It was not a small zoo, and the terrain was hilly. Add on top of that my difficulty of having one of my SI joints screaming bloody murder (incoming storms). I didn't want to ruin the fun, and it seemed that it was either do that (by not going, and thus hubby not going, or by going and hobbling along and having to call the jaunt short), OR tackling something I've been avoiding for a while now. So I bit back my pride and anxiety and rented a motorized chair. I haven't wanted to, for all sorts of reasons, and have been putting off my first attempt until I absolutely had to. Well, that "absolutely had to" had come. I was aghast at the price they charged, but hubby was adamant. While it was a little frustrating trying to navigate crowded pathways in the dark with this big thing, I had to and have to admit that it DID allow me to enjoy the lights and the company of family that otherwise would have been completely impossible.

Still, part of me resents needing to have done that. Which leads me to my questions for all of you.

There are parts of my Lupus that are technically inconsequential, but that bother me because they are reminders that something is very wrong with me. These little things worry me, or exasperate me, or just give me a nagging feeling of things being wrong. I hate this feeling, but can't seem to shake it.

Some of those little things are:

My malar rash. My rheumy doesn't seem all that concerned with my rash, which is admittedly pretty light. But every time I get it, I fret. It makes me feel like things are going badly. It doesn't help that usually I physically feel bad all over when my malar rashes come on, but even so, to me, having my butterfly rash bothers me.

Mouth sores. This is a relatively new thing for me. I didn't used to have them, but over the last couple months I've started noticing little bumps in the deep parts of my cheeks where my jaw hinges. Rheumy confirmed that they were the ones Lupus patients get. He's asked me about them before, but I've never been able to SEE them to tell if any sores I have are white. He could see them last week. Today, I got a new one on the center of my inner cheek. It's larger than the others have been, like I've bitten my cheek hard and left a welt. It doesn't hurt, and hubby peeked in and confirmed that it is indeed white. So now I'm fretting at it, weirded out that it doesn't hurt, and bothered by having MORE rather than less of these things.

Feverish eyes. This generally goes with my butterfly rash. Rheumy seems to think it's allergies. If so, I have never experienced allergies like this. My eyes get watery and feel warm, like when you have a bad fever. Sometimes the wateriness is just slight, probably enough to make my eyes shiny. Other times I leak occasional tears. Sometimes it's bad enough that it's almost like I'm crying. The thing is, they don't itch or feel gritty or anything like what I associate allergies are. Sometimes I think I might have a fever when this happens, but generally I don't. I dislike not having an explanation for it, and worry that something is going on when they get this way.

I know that none of this is earth-shattering or life-threatening, but they still upset me. I don't feel healthy at all when experiencing these things, which is enough all by itself to upset me. Do any of you have similar struggles? Do you have small, not-so-important things about your health that bother you and remind you unpleasantly that your health is not what it should be? Please share with me, so I don't feel so alone in being bothered by these little things.

Also, please know that I understand many folks have it worse than I do. I am deeply grateful that I have not had any organ involvement thus far, that I haven't been diagnosed with other conditions, etc. I do not mean to minimize or belittle the fight others face. I just am looking for a little companionship in my own personal struggles.

Actually there may come a point in time where your attitude is ' that's all that's bothering me- gonna be a good day'

Hehe, this is not exactly encouraging! I know what you mean though. I'd really rather not get to that point, but I know I have little say in the matter. In fact, it's that knowledge (that it may come to such a point) that makes me squirmy about these little things. They point to bigger things down the road, and it can scare me.

poobie said:

Actually there may come a point in time where your attitude is ' that's all that's bothering me- gonna be a good day'

My trip for Thanksgiving with a friend had some stuff I’ve never had before, too. First, I had to get a wheel chair at check in. For the first time.: one foot has a nerve thing so my foot moves oddly because it’s numb; the other foot just had gout and was swollen more than usual (I can only wear flip flops because feet swell all the time.) Then I sat in wheelchair for three hours (plane delay.) that made walking worse. I’m using a cane because of the nerve thing. Then my friend’s house is enormous, with a long, beautiful spiral staircase her husband designed. So I got way more exercise than usual. I started getting dizzy spells the last couple of day-one day was really bad, and that took a lot of energy and worried me. But I tried not to let it worry other people( that disn’t really work.) We hadd coffee with my cousin, and watching me negotiate puddles in the rain in flip flops with a cane and two bad feet led her to tell my sister I need assisted living. Came home, really needed the wheel cair even more, plane delayed 2 hours, but luckily I met a really cool 88 year old woman in a wheel chair, too. She’s been hijacked in a plane, crash landed in an Amazonian jungle etc., so that was GOOD! Came home, and my cell and landline were both out. Cell was in airplane mode. Fixed that and called my friend to say I got home and found that my cousin, when she couldn’t reach me had called my friend and my sister and they were all freaked out, forgetting that being lame and tired doesn’t mean I’m incompetent. My sister, who I’m barely speaking to, had called airlines and god knows who, and was pissed. She totally overreats. I was tired and rested that day, then go the stomach flu. I slept 144 hours and made mysef totter to the kitchen and drink lots of fluids and today I’m at the end of the flu. Good grief, not sure I’ll travel again. I don’t have that much energy, pretty much terminally tired. I find the regular lupus stuff tiring as it is. But I’m glad I tried it. I don’t like it when I get a sign that lupus is going to crash down on me in a new way, either, and being made aware just what tiny amounts of energy I have was really discouraging. It’s good that you found out a motorized chair can be positive. I really don’t want to go to mysister’s for Christmas to get lectured by her about what I need to do anout everything in my life, but I want to see my nephew. She thinks I exaggerate my illness, when I try to minimize it. She and her husband seem to think. I’m lazy, not sick. And not managing things well.

Obviously I didn’t sleep 144 hours, just a measly 14! The new scary thing were dizziness, actually not being able walk through the x ray, the wheelchair, the nerve in foot (waiting for a nerve test), my legs shaking from tiredness 1 day. I’ve had dizziness from strenuous exercise, but usually goes away. I was glad another friend had the flu, that it wasn’t lupus!

Sometimes it’s the little things that hit us hardest, the chair fight was one I’ve had myself. It reminds us that we have to prepare not to feel awful. And good for you doing all that you’ve been doing. Brava!
As to the other symptoms, you may be looking at some overlapping diseases which is so common but needs to be dealt with.
Congrats on all of your wins!

I agree with poobie.

Someone wrote about acne and I thought "if that's the only thing you have to worry about". That was as I was preparing to go to my pulmonary and get the results of my High resolution CT scan. I have interstitial lung disease. Not bad enough yet for biopsy but definitely scars in my lungs. basically no cure or no treatment.

I had mouth sores til going on plaquenil 3 yrs ago, and my eyes have not changed. I am very weak as opposed to fatigued. Rest more on days when I want to do things like going to dinner or a little, very little, shopping.

I know everyone wants answers, so do I. I think the reality is that there ARE no answers .

Have the best day you can.


this is a day by day disease, if you're biggest problem is you wake up exhausted that's a good day. You will learn in time do what you can, when you can, when you can't you need to rest. getting that chair took a lot of courage, you had to admit out loud you have limitations, I struggled with that one for a very long time, still do. the hardest part of having lupus is accepting your limits, the other is the idiot family members who only criticize yet never offer to help or even learn about out disease, you keep up you're doing just fine.

It seems your main concern is that you are noticing outward signs that you are limited by Lupus, and different from “normal” people. I am a woman with mild Aspergers (and yes, I know that term is no longer used by drs, but I like it) and SLE, so I also feel like I’ve been beamed down from another planet at times. But, we need to love ourselves, and avoid comparing ourselves to others. To say. "I will do what I can today, and be thankful for that and not judge myself harshly.

I have had to use motorized cart and wheelchairs in airports for 2 or 3 years now. It has been hard but I have worked hard to squelch my initial feelings about that and instead put myself out there if I can. For instance the first thing I had to give up on was walking in airports so I started by asking the person pushing me about themselves. All but one person has been young people that were going to college and doing that job. I have been so impressed with each of them and their goals. I am generous with my tip, which is not something I can'r really afford on my budget, but I cut back somewhere else. I know they are struggling in another way from what I am and they need to see that some older people appreciate them and want to listen and talk with them. Walmart...I have met some great people there. Some have helped me but I have been able to help others. I sat and talked with one woman about what she wanted to make for her granddaughter and wanted my opinion all because I was in the fabric area!

This is why I am alive. Every time I have been given another battle to fight I have found out that I am given a different strength to use. It doesn't seem like much but we are all presented with different situations in our life and that is when we have to be aware of how to react to those situations, Believe me I have failed too many times to count but that is a part of lifes struggle.'

I don't have a doctor to tell me how to cope with this and sjorgren's, which is worse then the SLE so I learn from this group and the Sjorgren's group and I am very blessed with a great husband, 3 sons and 2 DIL, siblings and my husbands siblings, and a lot of friends. I need to thank all of them more then I do.

This is long and I hope I don't sound preachy because I get down very much so but I think we need to bolster one another with positive ways to handle what we do. This has been my way and you need to find your way. I can't dwell on how I used to be or I get very depressed. Be strong, Talencia! You can do this. Gentle hugs, Rita

Thank you so much for sharing this! It was very inspirational to read, and helps in putting a positive spin on things. I do try to keep a positive outlook, but it is easy to get pulled down by fear and worry, not to mention ego and pride. I so much appreciate you sharing your thoughts and experiences!

reet said:

This is why I am alive. Every time I have been given another battle to fight I have found out that I am given a different strength to use. It doesn't seem like much but we are all presented with different situations in our life and that is when we have to be aware of how to react to those situations, Believe me I have failed too many times to count but that is a part of lifes struggle.'

Talencia, I’ve been on this site for about 2 years & this is my first ever post/reply. When I read your words, it was as though I had written them myself…every one of them! Wow! You are not alone. I experience all of the same issues & while I’m grateful for not having organ involvement, the issues I do have overwhelm me at times. I’m also grateful for a supportive & helpful husband & mature teenaged sons. I tend to “act normal” in front of others, even my parents, as they have their own health issues as they age. I relish the times I can just be me, but I do feel like my husband & sons are burdened by me sometimes. I just keep “saying good morning”, thanking God for his grace & moving along. I’m here for a reason, even if I haven’t figured it out yet-lol. Take care…

Honestly, the thing that bothers me is when my brain's not working right/foggy from the lupus or or I'm really dizzy. But my good days are so much sweeter because I realize that I'm a stronger and really a better person because of what I have gone through with lupus. I can then use that to help others and relate to those who also struggle or suffer. We all can. And I appreciate things so much more.

These replies are great! Very helpful to anyone living with constantly changing circumstances, as we all are with lupus in our lives. It is really helpful to hear how others cope. I think we have to constantly live with change, which hardly anyone likes. In a way, we are like explorers or pioneers in unknown territory- and without a map! It takes a lot of courage, a lot of good attitude, to adjust to new health issues, and we all do it routinely. Like it or not. That’s why outsiders don’t get it, I think. It’s kind of amazing.

I was dreading going on a cruise we had been planning for a year. It was for our anniversary and hubby' s birthday. I was diagnosed 3 months before we left due to symptoms and blood test. I was having leg, arm, ankle, wrist, hand and foot pain. Blood tests confirmed. It was much better by the time we left, but not great. I took a rollater walker with me and used it most of the cruise. Yes, I was very self-conscious. People stared and made comments. However, I met several people using the same thing and others on scooters. They helped me realize you do what you need to do in order to enjoy a decent quality of life. To heck with everyone else. I had a great time.

You are absolutely right. I am not in to much pain but when I am I will go mobile rather than stay home. We have to make all kinds of adjustments. I went to Vegas last month and before I left I had my PCP print me a copy of my med and allergies and diagnosis just in case. Better to be safe than sorry.

As long as you had a good time.


Hi Talencia,

I understand you completely. I also other stand feelings of those with more involvement, because many of them are my friends here. I like that this is a safe place for all of us to be able to express ourselves. I believe that all my mother went through, and was undiagnosed with Lupus - really is a generational blessing for me. What she went through, I know so much more now to take care of my health. My good friend Ann A. has patiently suggested that I eat better. I had replaced dairy with lactose free, and noticed the changes in how I feel. After two years of hem hawing around - I'm on one of the strictest diets I've ever been on in my life. Basically an elimination diet, my husband and I are doing together. He's off all his diabetes meds in one week, and I feel so much better. My goal is to put my Lupus in remission. I've also lost 10 pounds in 8 days.

I'm not saying this is a cure. I will always have Lupus. But I can do my part to feel better. I still have pain, but its better now as well, and my fatigue has diminished.

I share this with you all, because when I started back to work last year, I was beat. I would come home from work and sit in the recliner, and many times I needed to go to bed to lay flat, sometimes going to sleep at 7 or 7:30. Come the weekend, I had to recover from the week and I had NO energy to get on the computer. So I have been following discussions on LWL, but couldn't respond.

For today, I'm here and I have hope. I have to do my part and Let Go and Let God do the rest.

Love and Prayers


THANK YOU for posting this!! After reading this I finally realized I have the mouth ulcers!! I always thought I was sleeping funny on my face!!! Also my malar rash is slight and most people don't realize it but I know its there. I also hate the foggy brain. For a while I was really self conscious about it esp. talking to new people and patients. I started to feel like they would think I was dumb, now I just make jokes about needing coffee or something silly. I know it's something I have to deal with and I can either accept it and move on or let it bother me. I chose to try and work with what I can it takes too much energy to self loathe and have self guilt. I try remeber all the great things I have done this year. But every once and a while the little things all add up and it really bothers me. Like not being able to do something fun because I have other plans that week or I'm exhausted.