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Feeling really down tonight


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#1 mopsygirl

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Posted 15 December 2010 - 03:23 PM

I am really down tonight... any words of wisdom? The magnitude of the situation is really starting to hit me and I'm panicking :(

#2 janey

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Posted 15 December 2010 - 04:24 PM

Hello Darling,
I'm so sorry to read that you're having a bad time right now. Please don't punish yourself for it, because it is something that we all go through and it's natural. Most times when I feel down I try really hard to be distracted with a funny movie, hanging out with a friend, or a good book - anything to get me thinking about the good things in my life. However, there have been times when cuddling up under a blanket with the cat and a good cry is exactly what I need. It helps get some of the stress out of your system. We do a have "coping strategies" page that might help provide ideas on how to deal with the emotional stress of this disease. You need to find what works for you because we all deal with things different.

I'm glad you came here for help. We all understand and have experience with what you are going through. So please always come here for support and lots and lots of hugs.
Janey Willis
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#3 Jeannie McClelland

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Posted 15 December 2010 - 04:42 PM

Hi Kelsie,

Janey's right. We've all been there, done that, got the soggy handkerchief. This disease, in any form, provides an emotional roller-coaster and after a while we mostly find our own ways of dealing with that so the impact of the blues isn't so bad. Years ago, in another situation entirely, I had a doctor tell me that the best cure for feeling down to pick one thing you really hate to do and do it. In my case it was then and always will be cleaning the refrigerator. Man, for about a year I had an absolutely spotless fridge! He was right though. Doing that job completely distracted me from my woes and when it was done, the sense of accomplishment had completely turned my mood around.

So here's another hug to cheer you up. We've got lots to share with you.
Jeannie McClelland
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#4 barefut

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Posted 15 December 2010 - 05:47 PM

Hi Kelsie,

I've been feeling the same the past few days. I like Janey's idea of curling up with the cat for a good cry to get it all out of your system and relieve some stress. It really does help to release the floodgates. We need that from time to time.

When I was first diagnosed I talked to a counsellor. She was not much help but it was good for me to at least have someone to talk to about everything who would not freak out or judge me. I was looking for a counsellor with a more proacative approach and she just sat and listened and wrote.

Also be aware of depression and if you can't pull yourself out of the blues within 2 weeks, it's a good idea to talk to your doctor. Scleroderma gives us a lot to deal with emotionally and there is nothing wrong with getting help in the way of therapy or meds.

Hang in there and know we are here for you!

#5 Joelf

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Posted 15 December 2010 - 08:50 PM

Hi Kelsie

I'm so sorry to hear that you're feeling rather low at the moment.

I'm sure we wouldn't be human if we didn't feel worried and anxious sometimes; there's nothing wrong with admitting that everything is getting on top of you.

Although I tend to have a fairly upbeat attitude, there were times (particularly before I was diagnosed and was waiting to see the consultants) when I was very low and in fact burst into tears at the doctors.....most unlike me normally! However I usually find that my natural optimism asserts itself, and as the others have said, it often helps to indulge yourself with something you really enjoy (or don't enjoy as in Jeannie's case! :lol: )

Remember you can always come on the forum for help and support at any time and there will always be an understanding shoulder for you to cry on.

Here's another :emoticon-hug: for you.

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#6 mando621

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Posted 16 December 2010 - 04:04 AM

Hi,
It has been a while since I posted. I'm trying to deal with things and hovering around this site can unfortunately keep things on my mind that I would be better off not thinking about.

My husband more or less said that I had to ask the doctor for an antidepressant when I was in to discuss getting a referral to a specialist. I'm changing insurance so I can get to a teaching hospital with a sclero expert. Anyway, in our discussion I did admit to feeling down a lot. So, the doctor prescribed a very very low dose of an antidepressant. I started it, and my hubby said he could see a difference immediately. What I noticed, I was feeling slightly lighter about issues, but my mouth and eyes were going nuts. Everything was so dry I felt like there were pencils being driven into my eyes, and my tongue was about the worst it has been. I felt so awful with my burning mouth that I just couldn't take it anymore. I quit taking the med and called the doctor to let them know that it didn't work out for me. They didn't ask that I come in, so I'm sort of left here wondering what next.

I am trying to get my attitude to be more positive and not dwell on things too much. I think I am dealing with things rather well, but my hubby disagrees. He is very angry with me for discontinuing the meds. I wish he would think about going to counseling with me, but his schedule is tough. He is back to work but was unemployed 10 months last year. I know he wouldn't take time from his job right now. I feel that he is depressed as well, and he doesn't want to admit it. So we are at an impass.

I'm going to see if I can get the referral come the new year, and I'd like to see what the specialist says. I hope I don't have a terrible record as an uncooperative patient. I haven't been able to take many meds due to negative side effects that are not worth experiencing.

Sitting with my cat, my knitting, and some quiet music sounds like a wonderful option right now. Once I'm done with my final exams that is first on the adgenda!!!

Thanks for the support as always. Kelsie I hope you are feeling brighter.

Mando.

#7 Shelley Ensz

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Posted 16 December 2010 - 04:30 AM

Hi Mando,

Here are some warm hugs to brighten your day. :emoticon-hug::emoticon-hug:

Have you thought about using eye drops and mouth gels, to ease the dryness? That works for me, and especially when I have to take meds that make the dryness worse.

Then you might be able to enjoy the best of both worlds! My approach is to take all the help I can get for feeling better. Next time you encounter medication difficulties, see your doctor about right away (before you stop taking it). Some antidepressants and other medications (like steroids, for example) can cause horrible problems if they are abruptly discontinued.

If your hubby sees you improving on the meds, maybe he'll try them, too. And often counseling isn't of much more help unless people are first taking meds, so it is not a matter of only choosing one or the other.

If you are religious, you can see if your place of worship offers counseling services. Many/most do, and typically free of charge by very well-trained counselors. They might be able to accommodate a weekend visit, too.

I find it's best to pick up my own spirits first, before worrying about anyone else (like a spouse), because sometimes their 'bad attitude' might really be a reflection of my own need to see the very worst, because I'm not feeling well.

The eye drops and mouth gels (even mouthwash, too) are all over-the-counter so you don't need a prescription for them. You may want to visit your doctor again to see about getting back on track. This will show the scleroderma expert that you are sincere about doing everything you can to feel better and that you aren't 'difficult' or 'noncompliant' which is a bad word to have leaked into the chart.

Speaking of which, if you had seen your doctor when you ran into side effects from the meds, and you both agreed the only solution was to discontinue the antidepressant, then you wouldn't run the risk of getting a label like noncompliant. And in this case, they might have been able to point out ways they could help you manage the side effects so you can enjoy the effects of the med. Also, some of us discontinue depression meds because we are still depressed and think everything is worthless and there is no hope -- which is all really just the depression still speaking.

Some things take awhile to kick in. And many (I think the majority) of scleroderma patients need help with depression or other mental health issues. It's just plain par for the course, unfortunately, and something that needs to be dealt with head on, just like any other symptom.
Warm Hugs,

Shelley Ensz
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International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#8 mando621

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Posted 16 December 2010 - 04:44 AM

Hi Shelley,

Well, I have at least 3 types of eye drops in my purse and scattered all over the house. I use them often, with only some help from them. I don't get much help with the burning with the dry mouth rinse, it is sometimes overpoweringly mint.

I can't get in to my primary care doctor for months. So the thought of continuing the meds while trying to get in and deal with the issues wasn't going to work. I actually got a letter from the doctor a while back stating that she had too many patients and we should look into getting a different doctor.

I'm going in for tear duct plugs on Tuesday next week. I register less than 3 on the Shirmer's test, calcium deposits on the right eye, and the last optometrist noticed capillary changes in my retina.

I only took the med for 3 days, so yes, I didn't give it much of a try. I knew that it could cause terrible symptoms if you stop taking it. Didn't think it had been too long to just stop at that point. I probably built up a near case of panic in taking the meds in just reading about the side effects. I had trouble sleeping, found that I was overly angry a few times, and just wasn't coping mentally about it at all.

I feel that some of the constant physical symptoms I have is the burning mouth and dry eye pain. Making those issues worse is not worth it to me. I'm dealing with the fatigue much better, I seem to have built up more stamina since summer.

I've started a knitting group and that is a great thing! and I'm looking into starting an Irish Session in town, since the one I went to recently had to disband since the location is now closed on Sundays. I would say that I'm trying to be active in helping myself deal with the issues. As to my hubby, that is often a totally different issue. I think we have some underlying troubles that get bad now and then and he blames it on my mental attitude.

Thanks for the suggestions, I've already considered most of those.

#9 Shelley Ensz

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Posted 16 December 2010 - 05:36 AM

Hi Mando,

Oh knitting is great, isn't it? I don't knit much because I prefer crochet. Jeannie is a knitting knut, too. :blink:

They say it's a form of meditation. I certainly know it's very relaxing and a wonderful way to work out stress plus create something lovely in the process.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#10 Patty Arche-Hueck

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Posted 16 December 2010 - 05:38 AM

Like everyone said, it hits all of us, sometimes more than once, and everyone has very good advise for it. I am sorry you are there now, but you are not alone. And that is good news, because we need you as much as you need us. When I am down I think of my kid and her future and how much I want to be there and like Jeannie said I look for something I can do to keep my mind and body busy. No fridge for me (my hands are not good) but, cooking for someone or reading a book do the job. Hope you start to feel better and keep us up to date.

Hugs,

Patty

#11 mopsygirl

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Posted 16 December 2010 - 08:30 AM

I am feeling a little better today. I actually just found a therapist, and my first appointment is tonight! It's been a really stressful week, as I had finals. I am really proud of myself for pushing through and getting my work done, even though I have just wanted to curl up in a ball and cry. I hope you are all feeling well :)

Mando, if you would ever like to chat, please feel free to shoot me a message. As much of an emotional wreck as I have been lately, it would be nice to help out someone else that was in my same position.

Thanks again for all of the encouragement everyone!

#12 Sweet

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Posted 16 December 2010 - 11:12 AM

Hi Kelsie,

As you can see you're not alone! :emoticon-hug: I'm glad today seems a little brighter for you. :flowers:
Warm and gentle hugs,

Pamela
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#13 Shelley Ensz

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Posted 16 December 2010 - 11:39 AM

Great for you for finding a therapist, Mopsy! That's an excellent way to get things off on the right foot. There is nothing better than learning how to cope well with scleroderma; the process can (will) enlighten and improve your whole life.

I bet you'll feel a huge load off your shoulders just going to the appointment tonight. Major congrats for doing whatever it takes to help yourself feel better!

:happy-day:
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#14 Snowbird

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Posted 16 December 2010 - 02:33 PM

Well Mopsygirl...it seems you have gotten a ton of words of wisdom...here's my little tid bit.

I suspect that you are feeling very overwhelmed and scared. Rest assured, that is perfectly normal...we've all been there and fully understand. Fear unfortunately gets a grip on everyone at some point because it is so uncontrollable...that fear of the unknown really does wreak havoc with us at times but that too, will eventually settle down. Try to take things one at a time, one day at a time if you can. It's really great that you made an appointment with a therapist. I hope it helps a lot and I think it will!

Mando, I'm sorry to hear you are having side effects with the medication you tried. Perhaps your primary doctor or even your specialist will work with you a little more...maybe you just need a different type? A medication does not necessarily work the same on every individual. Not sure I am understanding the whole gist, so I apologize if I am misunderstanding? Is the doctor that gave you the medication the same one that suggested you perhaps get another doctor? I ask because the doctor that gave you the medication should also monitor you closely to be sure it is not having any side effects, etc, and work with you to change it if necessary.
Sending good wishes your way!

#15 mando621

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Posted 17 December 2010 - 01:07 AM

Hi Snowbird,

Well, I don't want to detract from Kelsie's post.

Yes, my doctor that prescribed the medicine is the one that said find a different doctor (in a letter). I wasn't asked to make a follow-up appointment and I didn't think of it while I was leaving the office. I walked out the door with a 6 month prescription and no directions about whether I would be monitored or whether I should make a follow-up. I think I was nervous about the whole thing knowing I had a bad reaction to an antidepressant years ago.

I had a talk with a co-worker yesterday which was nice, but then I had my dentist appointment. Oh the Pain! My teeth are actually fine. My tongue was so bothered by the air driven cleaning tool that the burning in my mouth was unbearable and I came home with that pain lingering clear into the evening.

Then we had a gathering at our house after choir rehearsal (parent choir for high school) which was fun and helped me put it out of my mind.

Off to give final exams all day.

#16 susieq40

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Posted 17 December 2010 - 05:21 AM

Mopsy,

There are days when we feel like things are so hard and unbearable that we just
want to scream. Do it, go ahead! Let it out! IT helps!! I take my truck up the mountain by
myself and let it out! It helped a lot. I also sought counseling; it's a good thing to try to
get your spouse to also go with you, you are both grieving the life you were suppose to
have, I know I do. It's very difficult to find out you have this disease, and then, of course,
living with it everyday. The best thing my counselor told me was, write down all the positive
things about yourself, and remember you are MORE than this disease!! And make it a point to
take things one day at a time. Tomorrow is a new day. Live for today. I love to paint, I haven't
gotten my painting room set up yet, but it's in the works. I'm so excited!


Mando,
If you need an antidepressant, maybe one won't work, but maybe another one will.
It took me several tries to find one that didn't make me want to lash out irrationally at
any given moment... :lol: . I had a couple make me want to punch walls, I am very sensitive
to medications, and my doctor knows that we may need to change them and work with a different
one. I had one PH medication that made me so tired, I couldn't move my body for 3 days. I only took
it twice and it costed $5000 for one month... expensive unused med, that can't be returned... I
think sometimes it takes a while to find a doctor that will work with us and our disease. Give
yourself time, and search for just the right one, talk to other people and find out who
they'd recommend. I can't wait to see a specialist in Seattle. Where I live, a good doctor
is hard to find, and once you find one, don't let go!

I hope all works out for the both of you! HUGS! We are all here to support each other!!

Super HUGS!!
Susieq40

#17 enjoytheride

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Posted 17 December 2010 - 06:27 PM

Hi there Mopsygirl- I hope that your therapy appointment went well. It really does help to have someone that will listen to you. Simply talking seems to make the stress level go down. It's the magic of words. Once you say them and the roof does not fall in on you, these scary, hidden feelings lose a lot of their power.
I can remember the cold feeling deep in my heart when I finally realized that I have "a disease." But I am lucky that I had a great improvement on medication which made me aware that things can change for the better as well as for the worse.
And I have a tendency to be the "queen of denial" which I think is a very handy thing. Once I get used to my situation, I simply wake up most mornings fairly happy. Adapting successfully can be really satisfying. At times like that, I am so impressed with myself- which is a character fault but one I now allow myself to have happily.
Please know that almost everyone here will understand.

(((hugs)))

#18 Sharon T

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Posted 18 December 2010 - 04:03 PM

I guess in some ways I've been lucky on the depression/blues side of Sclero.

I was already on an antidepressant when I was diagnosed, as I'd started taking it 7 years earlier when I finally was able to quit smoking; since I liked the way I felt and was more like my usual "pollyanna" self while taking them, my doctor recommended that I keep taking them. I'm sure they are one of the reasons, among many, that have kept me on an even keel the last couple of years while dealing with the uncertainties, pains and other tribulations of being a sclerodermian.

This board has also been a very, very good place for me to come from time to time, to remind myself how lucky I am to have good treatment and to have been diagnosed in a relatively short time after becoming really ill. I'm not able to help others too often, but I do find that knowing how many really wonderful people are out there willing to listen to me when I need someone, and to share their knowledge with me when I have questions or concerns, is incredibly helpful in keeping my spirits up when "polly" starts losing her "anna" and gets a tad weepy or woe-is-me-ish.
Sharon T.

#19 Margaret

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Posted 19 December 2010 - 02:25 AM

Hi Mopsygirl ,

I realize I am coming in late on this discussion but wanted to add to the great advice already given. My son went into a severe, Autoimmune induced depression shortly after being diagnosed. The Psych doctor told me that the same autoimmune issues that attack the body affect the chemicals in the brain. You may have no choice, meaning that a therapist alone won't help, but to go on medication to prevent severe depression. I was also told that each depression med only works on 10-15% of the population. <_< That is why there are so many of them out there. Each one is tweeked a tad differently because our brains our so chemically balanced. I sure hope you start feeling better soon.

Take care, Everyone.
Margaret