View Full Version : Tired of this rocky road

12-07-2008, 12:01 PM
Hi, Friends (both old and new.) Been so absent, and missing you all. Poke in now and again, but think of you all often.

I've been having a hard time for a long while, and (for some odd reason) reluctant to post about it or talk about it to anyone here, much. I'm so very tired of being sick; of being someone who is not really me. Some days I feel so very isolated and so very sad. Honestly, not all are bad days, and there are good things in my life, too. But I'm spending more time alone, more time 'inside' myself, and what I find there sometimes is disappointing. Feel defined by my illness - afraid that's what I present to others.

Symptoms have been nearly ever-present lately, although they are rarely consistent. Rashes (covered my torso with red welts topped with little white spots - no itch); miserable pain in hands, elbows, wrists, knees, feet, hips, thighs, back (some lupus, some fibro); chest pain; numbness from neuropathy; a maddening pain in my right leg/calf at night; a really terrible cold I can't shake (6 weeks and counting); head fuzziness; sleeplessness; fatigue.

PCP wanted to take me off cellcept for a month to let my immune system kick in to get rid of the cold, but rheumy said no - afraid it would trigger a serious flare, particularly since I'm so run down. She did cut it in half, and I'll stay there for another week or so. So far, hasn't done anything. Still miserable with this cold - I didn't know anyone's body could produce this much mucus (sorry...not a nice picture.)

I'm trying to get ready for Christmas. Hubby and granddaughter decorated most of my house (thank goodness for a new, pre-lit tree that just sort of 'unfolds.') But my Christmas spirit is still hiding, buried underneath all of this self-focused misery that I can't seem to shake. Makes me ashamed and embarrassed. I have many blessings but find it hard to count them some days.

So, there you have it. Sorry to be so long absent (and now so long winded.) Hugs to you all...


12-07-2008, 01:02 PM
Hi Jody,

I understand how you feel. I'm here every day to keep an eye on things as a moderator, but I don't post every day. Sometimes, I can't find the words, other days, I find them, but don't know how to put them together so they make sense. Other days, I'm just angry, bitter. I get so tired of talking about how crappy I feel. I spend the majority of my time alone. I get into my own head too, and sometimes what I find isn't very nice.

Nobody here will fault you for laying low, or not having the words. I don't have much Christmas spirit either. I miss the days of carrying around the Sears X-mas catalog around like it was the Bible. Getting up to a roaring fire that my Dad would make. Lionel trains around the tree. BB guns (no, I didn't shoot my eye out). Just the feeling of life being so simple, and fun found in the simplest of things. My parents always wrapped the gifts from "Santa" in the funny papers. There would be these huge packages all around wrapped in Santa's signature wrappings, and my sisters and I knew there was nothing but good stuff to come. I could never sleep on Christmas eve, too excited.

Here I go getting sentimental. Don't worry if you need a break from here, we all get that way sometimes. Just know you are always welcome. It's good to hear from you.


12-07-2008, 02:52 PM
Hey, Rob...thanks for those words. I can read in your post that you understand completely. You've been through so much. (I know lots of WHL members have.) Experience tells me this will pass. For now, I just have to hunker down and not let it grow too large in my mind.

Snowing here - the big, fluffy, "Christmas" kind of snowflakes coating all of our cedars, spruce and white pine. Gotta' admit, that's pretty beautiful, even in my crappy mood.

Thanks, Rob, for your encouragement. That's why you're a good moderator!


12-07-2008, 05:47 PM
Hugs to ya Jody,

Call your doctor and ask if it's okay for you to take Cold FX. If your doc says yes, then get started on it right away.

The pills are small

You take three pills, three times on the first day
Two pills, three times on the second day
One pill, three times on the third day

Then continue with the one pill untill all the symptoms are gone.

I swear by the time I'm going to bed on the first day I'm already feeling tons better.

I hope you are allowed to take this and I pray it works for you as well as it does for me. It's the only thing I'm allowed to take.

Hugs girlie, hope you feel better soon.

12-07-2008, 07:39 PM
SITC, thanks for that info - I've seen your posts recommending ColdFX before. I absolutely will check it out.


12-07-2008, 08:39 PM
Hi Jody;

I just want to reiterate what Rob said about not feeling badly because you are not able to post here that often.
I think that, this time of year makes most of us go inside and question why we cannot have our lives back. There are so many things that I would like to have back, and my health is only one of those things. There are times when I go inside of my head and curse the fact that I am still alive. I am still here suffering from so many losses.....why? I know that is an ugly place to be, but I have to honest and say that I do go there.
So, I don't think that there is any fault in you for thinking the thoughts that you feel might be wrong. We are only humans; very flawed humans who have been dealt some ugly and painful life cards! This is a hard game to play and it gets really old always trying to put on the brave and happy face.
You are amongst friends here....family, even. You never need to apologize and we are always here when you need us.
I hope that you are able to kick this cold and that you know that you are never alone.

Peace and Blessings

12-08-2008, 05:26 AM
Hugs to all - I read this and I can identify with so much of it as well. I've been dealt a much easier hand than many on this board - I can work, my pain is manageable, and lupus has touched me lightly.

But just the same, I find that this time of year is hard. I visited a friend's house yesterday - inside and out, all decorated for the holidays. Made me guilty, I came home and put up my 3 foot tall (prelit thank heaven) tree, hung 6 ornaments on it and called it done. At least from the outside it looks a bit more festive as the lights shine through the window.

Growing up meant Christmas eve at one aunt's house, all cousins and aunts and uncles - and Grandma reigning over. Then Christmas day at another aunt's - other side of the family, with more cousins and aunts and uncles, and another Grandma, and wrapping paper flying. Lots of laughter, cookies and love.

Life changes. Memories still are filled with laughter, I can still hear it. The kids are grown, their children have their own traditions. Life is quieter now.

This will be the first Christmas with my mother's mind totally clouded by dementia. I miss her.

Thank you all for sharing, and for letting me share. This board is a special family - we are close in caring, in spirit even though we live around the world.

12-08-2008, 06:36 AM
Hi all,
Yes, this time of year is tough....I suspect because we try to pressure ourselves to be everything that we used to be. But we are not....I cut my decorations back by over half, paid someone to hang my outside lights, and am leaving Christmas celebration with family open ended.....to see what I feel like doing. I used to be a champion in water skiing, owned my own personal fitness training business, worked 10-12 hours a day.....all in the past. I cherish the fact that I got to do these things and that I have the memories.....still makes it hard.

Don't beat yourself up.....there are plenty of people on this earth that will be happy to do that for us.

p.s. the reason that I got help and put up decorations is because it makes me smile a little when I see Christmas cheer in my home. I did it for me...no one else.

12-08-2008, 07:45 AM
Hi Jody,
I am sorry to hear that you are not feeling well. I hope that you get to feeling better.


12-08-2008, 10:47 AM
Hi Jody, so sorry you're feeling so bad. May your spirits, and strength, be lifted. If the Cold FX SITC recommended is not allowed by the doc, try honey. 3 tsp 3x a day, straight or with hot tea (if you do this, it has to be drank within 5min). The honey has enzymes that help build immune system. Helps me and the kids when needed. Straight is suggested if coughing badly. Hope this helps, feel better soon sweetie :D . God Bless you and may you be better in time for Christmas.

12-08-2008, 03:33 PM
Jody..Hi you...

Guess who loves you? We do, we do....whether you post or read.

Christmas time, indeed can be a magical time of the year and a feeling we expect to feel..and when we don't we call ourselves the Scrooge... Bah--humbug. I think it is okay to sit back and watch. And too it is still early in the season, and maybe we just might participate..

The holiday may come only once a year, but the happiness, the joy we feel, the giving can be there anytime of the year...so don't feel bad..thinking you are too self-focused. How can you not be, when your body is alive with pain and woes...Hardly a thing you can just ignore, turn off. Please give yourself a break, you are being too hard on yourself.

No woe is too small that we should be ashamed of, or embarrassed of to mention..and no ill is that big to be proud of. It is what it is...an illness that we try to fix. No woe is bigger than another. Lupus..is a chronic nag, an opportunist, and shows-up at the most inconvenient time. Which is anytime.

Sometimes we worry to much about what people think...and in the end they really could careless about the lights on a tree, but really care more about us and our well being.

Pull on some long johns, wrap up in a binkie, make a hot toddie..still have the recipe I sent? An extra shot of whiskey for the cold. Buy a box of gingerbread men and bite their heads off...

Maybe steep some cloves and cinnamon to fill the air. Turn off the lights, light a dozen of candles and play soft Carols in the background may help...

Times we try so hard to latch on to what was, I think we have to start creating new traditions, new memories to add to the old ones. Hard, I am trying that myself...

When I feel like my illness is too much for my husband, or I am too much to bare myself. I find if I say thank you, with a smile, I love you...with a hug is enough to make his day less worrying about me. I feel his contentment that he knows he has done something to make me feel good and he can go on with his day, it is his too.... His returned smile, hugs, I love you too makes me feel not so self-absorbed.

I wish I could be there to give you a hug...so you can look in the eyes of someone who knows how you feel. Times it can make a difference.

Hey then we can compare rashes... :D

Head hugs...

12-08-2008, 04:11 PM
It has been very hard for me to get in the Christmas spirit this year. I did go to a Christmas parade here in Oxnard, but it was very hot. Thank god, I had a chair to sit in, sunglasses, and an umbrella. Decorating the tree was fun, but I have been somewhat of a "grinch". Caroler"s came the other night, but I didn't even bother to come out of my bedroom to hear or see them.

I have been worried about the economy, my job, my health, a possible move, and other things. So it is difficult to feel good about Christmas. I know I have blessings, but it's hard to see them when you are feeling down. I, too, like Rob, have been spending a lot of time by myself. People just seem to complicate things , and I am sick and tired.

12-09-2008, 10:14 AM
Hey DrinkofWater;

I hear you and I think that I understand how you feel. For different reasons, it is difficult for me to get into the Holiday mood. It took my husband and I several years to figure out that Christmas was never going to be the same and that we cannot continue to do the same things that we had done before. As you said, being around people only seems to complicate things and makes us feel even more sad and lonely.
So, our new Christmas tradition: Pack our bags and get the #@!! outta Dodge!!! We leave, each year and just the two of us, to be with one another and away from everyone and everything else. I now look forward to our getting away!

I know how you can become sick and tired of always being sick and tired - it seems as if it is one thing after another and that it never ends. Others elation and joy just makes you more isolated and sad. I wish that I had some sort of magic cyber-wand that I could wave over everyone who is suffering from Lupus at this holiday season. All that I can do is to say that I keep all of you in my thoughts and I pray that you all are given some of what you need to help you make it through.


12-12-2008, 07:29 AM
Such a wonderful group of friends! Thank you to ALL of you for your kind replies, and good ideas. It's gratifying to me to know that I'm not alone. I knew that...but sometimes things just have a way of wrapping us in an unwelcome cocoon, unable to see things clearly or move forward.

I'm doing some better; cold is easing up and I'm making myself do some holiday things. It's very, very cold here (10 below this morning) so I've been a little set back by that. I'm going to see friends; bake a little; write a few cards... I can't make this disease go away, but I don't have to let it become all that I am.

Love you all...thank you for being there for me. I hope to stay out of the hole for a while and post more often.


12-12-2008, 12:04 PM
Hi Jody,

Sounds like you are having an "up" day today. Thats a good thing. I've been laying low a bit, and in a hole too. Between Lupus, MS, and personal loss I've been very angry lately. Just pissed off, and bitter. But, like you, I'm having a better day, and things don't look as bad. They always look the worst from the bottom of that hole. I hope you are having a good day, and have a good weekend too. Stay warm!