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View Full Version : The Post-Holiday Blues, I guess. (Venting)



littlered
01-15-2007, 01:01 PM
I am so very down today. Still VERY weak from the methotrexate; It's very, VERY cold here today (right now it's 34 degrees outside, and very wet and messy. Will be icy tonight.) My leg is driving me absolutely crazy with the pain, yet I am afraid to take the oxycontin because I am weak and dizzy as it is. I'm using my walker for safety reasons.

I want to go in and sub tomorrow, but not sure if I can. It does me such good to get back in the world. I am so very isolated and even substitute teaching does my heart such good, makes me feel somewhat "normal".

I told my husband that if this is the treatment, I didn't want it anymore. The nausea, the shivering, the weakness. He said, "Ohhh no!! YOU'RE GOING TO HAVE THAT TREATMENT IF IT KILLS YOU! I DON'T WANT YOU TO DIE!" We both started laughing when we realized how ridiculous his statement was. We were taking down the tree together. It's just not so funny today.

I dreamed last night that I was in my twenties again, before I got sick. When I woke up, it was such a shock to me, almost like waking up in a nightmare. How in heavens did things go so terribly wrong with my body?

Dear God, I am lonely and blue. Sorry you all had to listen to this whining craziness. Love to all of you, Kathy

MARYCAIN
01-15-2007, 01:33 PM
Kathy, honey, you're not whining, just feeling blue. But some people just can't tolerate methotrexate under any circumstances and you may be one of them. Nothing to do with your willpower or motivation, just different body chemistry. I was the same way with plaquenil - it made me sick as a mule from day one and stayed that way the whole time I was trying to take it. If your lupus is severe enough that you need immuno-suppressive drugs, then you might be able to tolerate imuran or cellcept more easily. There's no rule that says you have to try methotrexate first before you can try one of the other drugs. So before you take the next treatment, talk to your doctor about the side effects you are experiencing, and ask what benefits he expects you to get from methotrexate. Then ask if you can get the same benefit from a different medication with fewer side effects. But don't feel like you are locked into taking methotrexate because no other treatment options are available, until you first find out what those other options are. And if cost is an issue, imuran is available as a generic, and there are prescription drug assistance programs available for other meds. So please talk to your doctor, and don't be pressured into making a decision to please your doctor, your husband or anyone else - they are not living in your body, you are the one who has to cope. And do ask your doctor about TENS, it might help your pain a lot. But please don't ever think you have to apologize for being in pain. I wish I could reach all the way down to Texas and give you a giant hug.

littlered
01-15-2007, 02:38 PM
Thanks, Marycain! I think its just a combination of a lot of things today. I awlays feel a little letdown after the holidays are over. Plus being sick with Lupus, getting sick from methotrexate and being in pain doesn't hlep either.

Does anybody else ever have the experience of dreaming you are healthy and it being a shock to you when you wake?

I will see the doc on Wednesday AM (if it isn't icy out) and will talk about what we can do about the side effects and the TENS unit.

Like I told my mom this morning, we can't just lay down and die because no one that loves us will LET us! thanks again--Kathy

MARYCAIN
01-15-2007, 02:50 PM
Yes, I've had dreams like that, so vividly that I've actually forgotten my legs don't work the same way anymore, and started to get out of bed the same way I did for most of my life. There's always a moment of shock and almost fear when I realize it isn't happening. It's a bad feeling. I think those kinds of dreams start to go away after a while. But keep the dream of being whole and healthy alive, because there are remissions, and hopefully one day a cure. And many women find that their lupus just burns itself out after menopause. So it can happen - keep your dream alive.

Quarterhorsegal
01-15-2007, 07:40 PM
Woohoo, another reason to look forward to menopause. I am always COLD, so I joke that I am looking forward to having hot flashes. So now I can look forward to being warm and having my lupus go away. Man, I am going to be one wild old lady when I can move again. :lol:
Littlered, I hope your day got better and your blues have moved on.

littlered
01-16-2007, 08:52 AM
We didn't get ice so hubby is at work :( Since I obviously need to be home today (chills and erping last night) I am here alone...except for ya/'ll. I was sort of looking forward to being "iced in" with my hubby. How childish and selfish of me--I am sure he needs to get away from all this. He no longer plays his online games;sits with me and helps me when I need it. (I think it's kind of a rule--once someone holds your head while you puke, you GOTTA love them!)

GlassHalfFull
01-16-2007, 09:14 AM
I have a new theory on how to make sure you don't lose power during storms. Make a hotel reservation somewhere with a liberal cancellation policy and their own power source at least a day before the storm hits.

I lost power for the hottest week of last summer and also one of the coldest with winter, and when I learned about the three (not just one) ice storms predicted for this weekend in my area, I made one @ a hotel about 5-10 minutes away that had a generator and high speed internet -- since I work from home.

It worked this time! I know not everyone lives that close to a large variety of choices -- but I believe that the reservation gave me good luck!

littlered
01-16-2007, 09:51 AM
Smart idea! I don't know if it kept your power on, but super to find a way to insure that you will be warm/cool and that you can still get some work done!

browneyedgirl53
01-16-2007, 08:53 PM
Hey Kathy,

I suppose that over half the world feels those familiar "holiday" blues about this time, paying bills, families going in different directions, feeling isolated....yep, you have what I call the "reality pains of post holiday celebrations" :turn-l: It's a short time of sadness....but it will pass my friend. It doesn't help that you aren't feeling good either.

What a wonderful gift that you don't have to go through all this alone; having a compassionate companion and friends who love you; and kids who can make your heart soar in a day.....I'm sure the kids miss you too.

If I may share this thought with you about the meds; it just plain ole' sucks....there's no wonderful word to describe it. Are there other alternatives to the dosage....I wish you didn't have to be so sick; but it sounds like you're taking good care of yourself, and that is important.

You're in my prayers, friend. Hold on and let us hold you up...if you're too tired to stand.

We love you.

Much love,
Browneyedgirl

psalm 56 3
01-17-2007, 08:01 AM
I am confused about being cold. Is this due to the medication you take or from the disease? Normally I run hot but for the last several months I have been cold. So much so that family members are shocked because that is not the norm for me. I noticed that while reading the newspaper this morning I could not stand to have my hand on the kitchen table surface because it was cool to the touch, it made my hand feel like I had it in ice. My hands are very quick to turn cold, and do this in the summer as well. I am not taking any medications for the Lupus at this point, so I am not sure why I am cold. I have been diagnosed with Raynauds Syndrome, but I donít see how this could make my whole body cold. I assume it is only the hands.

Kathy, I know its cold out there right now. We just got hit with it yesterday. When I went out in morning it was 65 and by the time I got home that evening it was in the mid 30's. It's below freezing right now. Please try and cheer up, this will not last forever. Make one of your fabulous dinners, light a cozy fire, and cuddle with your guy. Spring will be here before we know it. We are headed that way....

littlered
01-17-2007, 10:12 AM
Yes, we are iced in today. I made nice Italian chicken soup for last nighy (22degrees and an ice storm,) It was ok, nothing special. I can't be up on this leg for very long. I may try to talk my husband into helping me make some steaks tonight with redwine sauce and mushrooms. Baked potatoes. I wonder if he'd mind cooking outdoors? Of course, right now (11:09) he's sleeping in...a treat for him, since he usually gets up at 5:00 A.M, and had to this morning to decide to call school in or off. then he started watching the news and got interested, didn't come back to bed til 9:00!
He is a dear and I am glad he's at home today with me. I was unable to go to the Doctor's office, so I will go tomorrow morning. Gonna talk about: something strong for nausea
a tens unit for my leg
will let y'all know how it goes--Love, Kathy

mnjodette
01-17-2007, 07:34 PM
Oh, Kathy, I'm sorry the methotrexate is giving you such fits. It didn't work for me either, but not because it made me sick. Just didn't work. I'm on imuran now and (knock on wood) it seems to be working. Word of caution: I did get shingles after I started taking it. Apparently a not uncommon problem. I hope your doctor is responsive to your needs. You shouldn't have to suffer through any more nausea and chills - that's so miserable. The post-holiday nasties don't help either. We're all here for you, dear friend, and you know you can count on us to listen. You should never feel the need to apologize for venting. That's what support groups are for, right? Prayers and hugs coming your way....

Jody

littlered
01-18-2007, 01:35 PM
ok, he gave me a half-dose of the methotrexate...and next week I will only be taking 1/4 of what was in the injections (brain fog and too lazy to get up and get my purse.) For today, he sampled me some Phenergan. I think it's helping the nausea somewhat. ((still feels like frogs in my tummy or something.)

He will get TENS units in his office so we can try them next week. THAT will be a relief, not to have to keep taking so much strong pain killers. I have already started making my dosage smaller, as per his request, so that I don't have "withdrawal" from it.

I do seem to have a little more energy but I know the medicine takes longer to have a great effect. He said Phenergan syrup interacts with muscle relaxers, so I'm shivering and shaking, but not as bad as last time.
What a journey this is! I made some yummy black bean soup today...hope I can enjoy it. Wish y'all were here!

MARYCAIN
01-18-2007, 02:02 PM
I wish we were there too - hope you're wrapped up nice and warm. I also hope the TENS unit works well for you! If you can't take the muscle relaxers, try a nice warm soak with some mineral bath salts, or have your husband give you a nice massage with some warmed lotion or massage oil to keep your muscles from stiffening up.

GlassHalfFull
01-19-2007, 07:35 AM
I go to a chiropractor, who also does accupuncture. I've only been doing it a few months -- but it really helps for a variety of things, pain, stress levels etc. She has even used it to help my sinuses and the results were fantastic.