Hi,
I'm sorry, I need to unload a bit. I'm not very good at opening up to people. My husband, when he gets sick, needs attention, drives us all a little nuts to be honest. I'm different, I just want to be left alone. It's always worked out fairly well for us as he is not great at being around sick people. Don't get me wrong, he loves me very much, he's great at taking care of things for me and letting me heal. Talking about it, not so much. I haven't been at top form for a long time, years probably, but this summer everything got bad. No energy, swollen glands, arthritis pain, muscle twitches, fevers, night sweats, my eyes hurt, my throat hurt, my hair coming out in handfuls, etc... Anyway, I was really sick and we didn't know why. Found out my ANA was positive and found a rheumy in town, he's been great. He says probably sjogren's or lupus and gives me the generic plaquenil and mobic. My eye doctor says sjogren's, and gives me drops for the dryness, and corneal abrasions. Everyone has been great. People know I'm sick, when I feel bad I tend to look awful, and I shake like crazy. It's lovely.
I have stopped, for the most part, working in my husband's store because I would get confused when running the cash register, that, along with the shaking all the time, made me look like an idiot. The plaquenil is helping a lot, I'm doing better, but I'm afraid to try again. I'm definitely not God's gift to customer service :) I homeschool my boys and now that I have some energy again,it is going okay, thank goodness. My oldest has mild asperger's syndrome and didn't do well in a regular school setting. The thing is, I know I'm lucky. I have good friends, a good husband, the support of my community, good doctors that will listen, I don't have to work... But I'm so sad.
I like to write, and lately my poetry is SO depressing. My husband says I'm shutting him out and he feels very lonely. We talked, and I'm trying, but I can't talk to him either. He gets so worried. He calls me like 10 times a day, and I got so tired of hearing "what would happen if I lost you, I couldn't handle it" , I finally said "well, it would really suck for me, I know that!" Sometimes it just gets so exhausting reassuring everyone all the time. I'm scared too. I've had a swollen node on my hairline since June. I know I sound horrible, but sometimes I wish I could just be alone for awhile to figure out how I feel without worrying about how this affects everyone else. I feel so guilty, I guess. We have a fairly new business, so no insurance as of yet, and this is all so expensive. On one hand, I feel like I'm letting my family down, on the other hand, they are driving me nuts.
Uge... I know that this is a process. I know that I am in a kind of mourning state, I know I will figure out how to handle this too. It reminds me a lot of how I felt when my son was diagnosed. It just sucks, that's all. My emotions are everywhere and I'm so mad at this for happening right now when things where all coming together so well. :'(
It has also been a bitter cold winter here, it's been between -30 to -50 all week which, I suppose, is not helping. I don't know if using the SAD light is a good or bad idea since I seemed to be somewhat photosensitive this summer. Anyway, thank you so much for listening to my vent. These are things I don't feel like I can say to anyone else. Thanks for being here.
KatieB
Im glad you came to vent. You have a lot to get off your chest. You are under a lot of pressure and stress. Which is not a good thing for someone with an autoimmune illness. Stress seems to throw us into a flare.
You do not sound horrible. It is how you feel. It is what you are going through. It is not easy to deal with all that and be sick. Its not fair.. I say that a lot also.
Eventually you will find a way to deal with it. Even then, you will still have days you need to vent and or cry. Its ok.
Luna
Hi Katie
I think you are right about going through the mourning process. It's something most of us have done and the tunnel can seem very long and very dark.
The other thing is - have you had your thyroid checked recently? If it goes wrong it can make for very black moods and brain-fog and the numbers can change quite fast.
If evrything really feels just all too much it would be worth talking it over with your doctor. Sometimes we need anti-depressants to kick start us back to the world of the living!!
Hopefully venting will help too and there is always someone in here to listen.
Take care - Scottie :)
KatieB,
Sounds like your husband loves you very much. My husband grew up in Fairbanks and those
Alaska winters can made even a healthy person pretty blue. Keep yourself occupied with things that please you and spread around your love as best you can...it will make you feel better too. We are all here for you to talk to anytime. I was recently diagnosed and it's overwhelming sometimes but I just think about all the diseases or problems that I DON'T have in my life and that gives me thanks. : ) I wish you peace of mind and lots of hugs.
Gina
Thanks everyone. I've just been cleaning up our room and clearing off my desk. I want to start working on it again, and it always feels better to try to keep busy then to sit around feeling sorry for yourself.
Luna, thank you so much. I really needed to feel validated, I guess, and I don't want to hurt anyone I love because I'm having a rough time.
Scottie, thank you. I have had several thyroid tests done in the last few months, and they all were normal. I think I just need time to work through this and keep going, thanks for the suggestions.
Gina, you're right about Fairbanks! Everyone I know is having a tough winter this year. I feel very lucky in my family and I'm trying so hard to stay positive! Some days are definitely better then others. Thank you.
It is so nice to have a place to come where people can understand and I don't have to feel like I'm dumping more my family, who already have to deal with this with me. :)
Katie, I don't think the SAD light would bother you, but I'm not sure.
It won't affect your skin.
If that's where you have photosensitivity.
They aren't all that expensive it would surely be worth a try.
I couldn't manage without one, and we have lots of sun here and average day time temps around 60.
Yeah, I'm spoiled, but the summer is h**l.
BTW, you are entirely normal in how you feel. It is awful to feel bad and think that it may be something that will hang around, rather than go away like a 'good illness' does.
It would help if you would list some info in your tag line at the bottom, like you did in your post, diagnoses symptoms and medications. That way it is easier to know what you're dealing with each time you post and you don't have to mention it each time.
You also sound like you're getting medical attention, which is often a struggle for many of us.
I would also suggest that you might try one of the anti depressants, just to see if that will help.
Do you know that sadness and depression are PART of most autoimmune diseases, not the result of being ill, but actually a symptom of the illness itself. As it extreme fatigue.
Do keep us posted, angel. And take care.
Hugs
Elaine
You've to the right place to vent about SJS and how it changes a persons life. I've diagnosed for over 2 years and still need to vent at least once a week. You are trying to get your life going again. Things will never be quite the same as they were but we all with SJS have to fine what will be our normal now. They bad thing is that sometimes this changes from day to day or even hour to hour.
These are such real things to be venting about. You probably feel pretty trapped -- in winter, in the cold, in the marriage, in the new business.
Could you take a fantasy vacation? During one difficult period in my (fairly long) life, I would plan an elaborate weekend at a luxury hotel, just for myself. Who would take care of the kids, who would look after the house/apartment, what would I do when I got there, going to the spa, pool, out to a restaurant by myself, what movies would I see. Then after about an hour of imagining what it would be like to get away, I would feel considerably better. Just imagining that I had the money and the time to do it was wonderful. Imagining the hotel was nice, too.
Then, it turned out, I never had to do anything about the fantasy trip.
Or, if you have Netflix, see if an old TV show called Fantasy Island is available. That will prompt some interesting fantasy vacation experiences, too.
Best,
Soycoffee
Your feelings are so familiar to me. I was diagnosed a few weeks ago and am still in my mourning process I think. I tend to shut people out as well when I feel overwhelmed, sad, etc. and this has been an issue lately.
It might sound a little extreme, but I ended a relationship because I just didn't have the energy to reassure my partner when I have all this on my plate to deal with. I felt very selfish, but felt I needed to deal with this myself and didn't have the energy to worry about how it effected someone else (mush like you said). I need to figure out how it effects me first!
I know these are fairly normal feelings and I am relieved as well to be validated by others' posts. When reading your post I felt validated and relieved I was not alone in these feelings!
All the best,
T
The plaquenil is helping a lot, I'm doing better, but I'm afraid to try again
Katie does this mean you are no longer on Plaquenil? I can't tell if you stoped taking Plaq because you said you were doing well on it but were afraid to try again. Do you meen afraid to try Plaquenil or afraid to try and do the things you used to do? Perhaps you can talk to your dr about your Plaq dose and they might increase it.
I take Plaquenil and also take methotrexate and believe they both help me. Ask your dr about a SAAD light. Actually I think you can buy them without a prescription, but check with him first.
I also get down and mostly my problem is fatigue. I hardly ever go any where. I CAN go to a hotel and casino and we do sometimes, but it's so much trouble I'd rather stay home. I really need to push myself to go to the mall just to get out somewhere. I live in Michigan and our winters aren't so great either. So lets see if we can get dressed, put on a little makeup (if you wear it) and see the world. I mean go to the store, go to town, go to a restaurant for dinner tonight etc. Lucy
Thank you so much everyone! It feels so good to know that I have people to talk to that understand. I changed my profile as you suggested, Carolina, and I will try the SAD light. We have one here, actually, the kids and I used to turn it on in the morning while reading. If things don't seem better next time I go to the rheumy, I'll talk to him about everything.
I'm still taking the plaquenil, I just shudder at the thought of working at the store right now. I'm not as shaky, but still get awfully foggy sometimes, which I hate. No one likes to look stupid I guess. :o
It does feel very validating to know others are in the same place, I hope we all get to a calmer place soon! :) had to laugh at the fantasy vacation. I have longed for a beautiful, clean (not by me!) room on a white sand beach so often! My favorite fantasy vacation movie is Mama Mia. Gorgeous beaches, warm, ABBA music, and it makes me laugh. Maybe I'll pop that in later.
Well I'm off to redirect my boys again. Maybe I'll try to write a poem later that doesn't sound like it was written by a pre-adolescent girl after she lost her first big crush.
Eye
Eye am dry
Sigh
If only eye
Could cry. LOL,totally kidding here guys. They're not that bad I promise ;D
Thanks again for all the kind words and understanding. Here's me - taking a deep breath - and plunging back in. Take care, all!
Hi Katie
I really admire you for coming here and telling us how you are feeling. It takes a lot of courage. I also think it's great that you've dug deep and found the resources to keep going.
I agree with the others about mourning for your old life, pre Sjogrens. My life has been turned upside down over the past five years since I got ill pretty suddenly and I find it best to think about this as a completely new stage, a bit like the changes when you have your first child. Nothing prepares you for it but you meet great people on the new road.
Hope you get to watch Mama Mia later. I LOVE that film! I'll probably have to buy a new DVD I've watched it so many times. Do you cry when she sits with her daughter on her lap preparing for the wedding? My daughter's gone back to college and I hardly dare watch that scene today.
Visit lots and tell us how you're doing.
Thinking of you - Chickpea
Katie, I am glad that you came here to vent. It is hard to have all these symptoms and then try taking care of kids and a home.
One thing I can tell you now at my age (69) and after being "under the weather" for close to 50 years is to try and relax. I know that sounds really stupid, but the amount of energy that it takes to worry and fret is really gigantic.
You are homeschooling the kids and you are a mother and a wife so doing what needs to be done is just what you are doing. If you can't work in the store now just relax and go about your daily business. Rest when you can. Just because you are feeling pretty crappy right now doesn't mean that you always will. There are medications our there plus you live in a time when so many new meds are coming down the pike.
The one thing that is going on that is really causing stress in your life is the way both you and your hubby are feeding off each others fears. You are both upset and worried about the future. You need to understand that you are not dying. Yes, the old sjogrens may get all of us at some point but our chances of getting hit by a bus are pretty darn high also.
Hopefully, you can find some material to read on coping with chronic illness that you and your hubby can read and discuss. It might even help to speak to your minister. I would think that some of the people on this forum would have books to suggest.
Life is not fair, but with a positive attitude and a sense of humor life with chronic disease can be much more tolerable. Accepting the suffering that comes our way teaches us (and our kids) how to deal with adversity and face adversity. Please know that I am thinking of you. Irish ;D
A support group for anyone with a fatiguing illness would probably be good for you both. IF you can find a counselor who has lived chronic illness, that person would be well worth spending some time with. A temporarily able-bodied counselor could end up doing more damage than good. Be careful there.
Sharon
Hi Katie
As always, our Irish is so wise. Acceptance is not a weak position and, as Irish says, we and our families can learn so much from the way we deal with this challenge.
Sharon - I love the phrase 'temporarily able-bodied'! It's a great reminder that health is a very transient thing; age and disability await most of us, some sooner than others. I first heard it in one of Fred Small's songs - I think it was the one about the woman in the wheelchair who teaches him some of the realities of life for people with disabilities. Do you know it?
Take care - Chickpea
No, I never heard of that. I just looked it up -- how wonderful! I'm going to share this with my friends. http://www.lyricsfreak.com/f/fred+small/talking+wheelchair+blues_20318682.html
January makes me blue; then February comes along and blues pile on! So many reasons that life sucks -- until April/May/June. So we hang in there.
I died once, when I was 19, from anaphylactic shock -- being given a shot of x-ray contrast dye that killed me. They don't make that stuff any more.
I didn't get hit by a truck or a freight train, but I did get hit by a car that put me in a coma once.
They were fortunate experiences, fortunate in that they do put things in perspective. I am not responsible for the events; I am responsible for how I deal with them, how I take care of myself.
And if this is an annoying post, print it out, crumple it up, and throw it across the room. Of course it doesn't say anything about being blue right now. But it's a good time of year to cut each other some slack, let the kids take a "me" day away from school (even if Mommy is the teacher), trade exotic fantasies with your husband, without getting into heavy issues between you,
Yeah, yeah, I can hear you saying "I wish!" But that's the idea -- spend a little time wishing, even wishing for impossible things.
For what it's worth,
Soycoffee
Soycoffee - GREAT POST!
I needed to hear that today.
:)
Thanks a lot to everyone who responded. The last few days have been busy ones so I'm just checking back in. We had a sleep over party for the boys, teenage boys everywhere! Then some friends came over for the super bowl on Sunday, and Monday was for sleeping and recovering from the weekend.
I found a great book by Joanna Baumer Permut called "Making Friends with the Wolf". It's about a woman with lupus, and about how both she and her family learned to deal with her chronic condition. That one and another book called " Living With It" by Suzy Szasz have been really helpful.
Thanks again, it really means a lot that so many people took time to respond, and that song was great. Have you ever read "Welcome To Holland "? It's a poem about acceptance that was written by a Emily Perl Kingsley, about having a child with a disability, but it's very relevant for any kind of unexpected, life rearranging experience. I have in my desk drawer and it's been something I've pulled out over and over through the years.
Take care, All
Katie,
This is the place to come to feel normal, where others know EXACTLY what you're going through and care. Everyone has their moments of feeling overwhelmed especially since Sjogrens effects us in so many varied ways that often pile up. Always remember you are not alone and that we are all just a posting away.
HUGS
Sunny
Thanks again, this is such a great group. :)
Oh, and I finally got to watch MommaMia today. Yes Chickpea, I ALWAYS cry when she's helping her daughter get ready for the wedding! I love the song they sing. If I have to have a couch day at least I can imagine I'm on a lovely Greek island....