TheLupusSite.com banner

1 - 17 of 17 Posts

·
Registered
Joined
·
376 Posts
Discussion Starter #1
I've been away for a bit. Don't know why....but I know I can always come back.

I've been diagnosed with SLE for 3 years now and I think for the first time I'm truly depressed. I go to bed and don't really care if I wake up in the morning or not. Not sure what has brought this on.

I still have my knee problems from the Prednisone. Some of my family members have been pushing me to walk with the walker more cause they are afraid I'll be in a wheel chair forever. I've tried, but the pain is unbearable. My doctor wanted me to start reducing my Gabapentin. I did decrease it 300mg, but I haven't been able to reduce it any further. I'm still on 1,500 mg a day (I think...hubby does my meds now). I'm going back to my family doctor on Thursday to see if I can get into a pain clinic and/or do something else for my pain. My husband has realized that the two (reduced meds and more activity) things are a recipe for disaster. I really hate being dependent on them to get me dressed, take me anywhere, etc.

My girls are another story. They are just teenagers and this is very hard for them I know. It feels like they have shunned me out of their life. They turn to their Dad for everything. It's like I'm useless to them now (except when they need money...I'm the only income). I think they resent me being sick. I wrote this song for them. They won't listen to it now, but I hope someday they will. It's the first song "To My Girls".

http://www.soundclick.com/bands/default.cfm?bandID=851961

Music has been my saving grace. I had some people listen to the is song and one person basically said it was boring for the listener. So, if there are any musicians out there that can make this better for me, I'm all years.

I just got word last week that I was approved for medical retirement from my job. Thought it was good news until I found out that I owe almost $15,000!!!. Almost $9,000 is to repay my pension payments that I would have made the past 3 years I have been off work. The other $4-5,000 is to repay errors they made on my pay last year. So, that really hurts. I'm the only income and my pension is really peanuts. However, the insurance company will top it up. They are making me apply for the government disability plan as well. So, I guess I am now officially retired. They told me I had to take it or go back to work... the latter is not an option. My rheumy said I will never work again.

My husband has been on a kick to lose weight and bringing me along. I've avoided the scales because I know I've gained a lot of weight since the Prednisone...especially the last increase. Well, I'm "dancing" around 300 lbs!! I almost died. That's almost double my weight since I got sick. Of course, and he's right, that the extra weight doesn't help my knees. So, I seem to be losing in every aspect.

Sorry if I sound whiny. I don't usually get like this. I've had the odd moment, but have always managed to remain positive. Now I get teary about everything.

If you got this far, thanks for listening.

Annette
 

·
Administrator
Joined
·
10,167 Posts
Hi Annette,

The blues seem to be going around lately. If your depression continues I suggest you speak with your doctor.

Sorry to hear your knee is still such an issue. Is there any way you can have more physical therapy for it? Water exercise at an indoor facility might help.

It is probably for the best your medical retirement went through. That is a lot of money to owe though. Will they take it in installments, deduct it monthly or do you have to pay immediately?

Good luck with your weight loss plan. It is never easy to diet, but since both you and your husband are doing it together it should go a little smoother. The only way loosing weight is successful around here is if there is no junk food in the house. If it is here, we eat it.

Take care,
Lazylegs
 

·
Banned
Joined
·
808 Posts
(((Annette)))

I am so sorry that you are feeling this way, you do sound so low, and I can absolutely identify with similar feelings. Depression, however it comes about is a trully horrible thing to try to manage with, it sort of destroys you from the inside out.

Sometimes I think things can build up till everything just feels so overwhelming, I think maybe for me what helps is to break things down into little bits, and for a bit just not look at the whole picture.

I imagine that being medically retired has mixed feelings for you, especially financially, but it sounds like it is the best outcome, can you get some advice about finances, and any areas that you may be entitled to extra help.

It sounds like a really good idea to talk to your doctor about pain management, pain sucks, and makes functioning impossible, is it possible for hubby to go along too, it can really help if a partner does understand, and can support in a helpfull way, if hubby realises that reducing pain meds and increasing activity is a recepie for disaster perhaps he will be able to help with the doctor in coming up with a plan that will actually help in these areas, I guess I would only say that little steps might be the way forward, and perhaps a plan that you have come up with together may help you to feel more in control.

I can so identify with having teenagers, I think at times they think it is in their job description to make us feel rubbish, inadequate and of limited value to them! However, and I think that I have just got my head around this, (and it is only my theory) being a teenager is a series of phases, they are basically learning stuff and trying out attitudes, working out what sort of people they are going to be. I have just come out the other side of particularly difficult 'phases' with my kids, to realise that it had very little to do with me or my illness and just everything to do with them, I think its a case of weathering the storm, my kids are charming at the moment, although I don't discount the possibility that they will turn into alien monsters from another planet at any moment!

It made me sad to see how one persons negative comment about your music could make you feel so bad, I wonder if that has to do with how depressed you are, I know that when I am very depressed I am very sensitive to criticism or percieved criticism. Try not to take to heart one persons comment, and remember that your music is something for you (and others) to take pleasure in.

Am sorry I seem to have written an essay! But I do hope that things start to feel a bit better for you really soon.

(((Hugs)))
 

·
Registered
Joined
·
7,800 Posts
Hi Nutty and ((((((((hugs))))))))

I'm sorry that you're feeling so down right now, as Lazylegs said, it seems to be going around.

I just wanted to pick up on the problem with the girls. I think that teenagers (especially girls) are often quite distant or even difficult with their Mums (and sometimes Dads). It is a pretty normal phase that they tend go through. It may be made worse by lupus but knowing how much is hard to say.

It sounds as if you are taking some positive steps to improve things at the moment. The pain clinic sounds like an excellent idea and reaching out for help whether there or here is very important.

The important thing about your music, for you, has to remain what you get out of it. I have an uncle who is a painter (pretty well known) but many people looking at his paintings might think he's mad. What's important is that he paints for himself, not for others. You have to make your music for yourself and not for others. Of course some people are able to give constructive criticism (I prefer to think of guidance) which can nurture your passion but I think you have to be very careful who you choose to listen to. I'm sure your daughters will listen to their song at some stage, teenagers can be very cruel at times but one day they'll love that song and the love in it.

hugs :hug:
Katharine
 

·
Registered
Joined
·
2,404 Posts
Dear Nutty,
Think you have been away from us for too long.
I am sorry you feel so bad. Shifting the weight will be slow but they do say that even a 5% reduction in weight has benefits.

My children(much as I love them) have had their really awful spells too. Ungrateful, lazy, foul mouthed despite the fact that I know I have always done my very best for them. As far as I can gather this is universal. I found that talking to other Parents helps, as you may even find your girls are less dreadful than others the same age.

Could you possibly do some gentle stretching exercises in bed or a chair, just to keep a bit of muscle tone. I know it is a real drag.

I really hope you feel better soon.

My puppy fell in the garden pond yesterday- maybe that would have made you laugh.
X Lola
 

·
Registered
Joined
·
1,101 Posts
When I find myself feeling the way you describe "I go to bed and don't really care if I wake up in the morning or not. Not sure what has brought this on." I *try* to remember that much of this is biochemical, endogenous depression if you will.
There fore to ask what has brought it on is most easily answered as, "Blame the Lupus! It's biochemistry."
I will not ask *why* I find that comforting!:lol:
Hope you are feeling better soon.
Douglas+
 

·
Registered
Joined
·
376 Posts
Discussion Starter #7
Thanks everyone for your replies.

One of the things I remembered after that while they were reducing my gabapentin, I took myself off of amitriptilyne because I was having horrible dreams. The last one I dreamt that another lady and I were being held by a pimp. I woke up in a sweat with my heart racing and I said I was never taking it again...and I didn't. But now I'm wondering if maybe the "anti-depressent" side of the drug might have been helping out as well. The amitriptilyne was the first drug that made a significant difference in my knee pain. I was taking 25 mg in the morning and 75 mg at night.

So, I went to my family doctor yesterday, because it is him that has to deal with the pain control. I told him that I think this is finally getting to me and he replied something like "no kidding" or "no guff"...He said we could do anything that I wanted..increase the fentanyl patch...go back on the amitriptilyne..increase the gabapentin (which we already did on our own). Then he said that there was a new anti-depressent drug that also works on diabetic peripheral neuropathy. So, I opted for that. I took my first dose last night and I could feel a difference already this morning. Mornings I usually get up in tears cause the pain is so bad. So, I'm hoping this will work. It's called cymbatal. So, if anyone is taking this drug, I'd love to hear some feedback on it. The only side effect he mentioned was nausea and I'm used to that! I have medications here I can take if it gets too bad. I'm taking it at night though, so hopefully I'll sleep through it.

My last blood work showed that my cholestorol was high. The endocrinologist was going to put me on medication for it, but opted not too becasue I'm on so many other drugs. My doctor said the same thing. In the big scheme of things, this is the least of my worries. However, if it was anyone else, they would treat it. I find that scary...

Things are slightly better at home. My husband mentioned that same thing that was said here...that I'd be having these issues with my daughter regardless if I was sick or not. I guess I just don't feel like I have the energy to deal with it.

Depression is a hard thing to deal with. It's hard to think of it as my biochemistry dissing me...I've managed to stay positive for 3 years now, so I was thinking that I should be able to keep the happy feelings up. I think my doctor was waiting for me to crack LOL...

It's helps to know that I not alone going through these problems with my kids. Thank you for sharing your experiences with me. And I know we all share feelings of living in constant pain...I guess it helps sometimes to express it. I was just sick of being sick as they say. But when things started getting worse than better, I had a hard time accepting this.

The Rheumatologist said that the diabetic peripheral neuropathy probably won't go away until I am off prednisione which my be a long time coming. My husband is afraid that it's here to stay and so I need to get the pain under control so I can live with it. He is also watching my diet for me. I can't even keep track of my carbs for diabetes..and then count calories on top overwhelms me. So, it is good that he is taking care of that for me.

Anyway, I've probably have gone on too long already. Thanks again to everyone for your support. I promise to hang in there.

Annette
 

·
Jyneal
Joined
·
84 Posts
I know what you are going through. I was in the hospital all of October, and haven't been back to work since. I finally got out of the wheelchair, and walk with a cane. I too have teenagers, 16 and 13. It kills me when they think I am lazy. I am far from lazy, I am just in constant pain, and I have no
energy to do anything. All I do is sleep. I have a hard time standing by the sink to do dishes, or by the stove to cook.

I find it all depressing. I just want my life back. I want to get back to work.
My doctors said there is now way I will be going back to school this year. Maybe next school year.

They started me on cytoxan in December. So far my breathing is getting better, but I still need the oxygen.

I do know how you feel with your kids. I too feel the same way. I am used to doing everything for them, and now they have to help me.

I hope you will cheer up soon, and get to a pain free point.
Best of luck to you.

Jyneal
 

·
Registered
Joined
·
7,800 Posts
Hi Annette,

I'm glad to hear that you went to the doctor about all this. It is often a step we hesitate in taking but very much the right thing to do.

I hope the cymbalta works for you. I was unable to take it as it gave me severe nausea coupled with severe headaches and I gave up after two days. I hasten to add that I get headaches from a lot of things. It has happened again with the new anti-anflammatories my rheumy put me on just now, so I'm pretty sensitive that way.

I was able to significantly reduce neuropathic pain with tegretol (carbamazepine) so I guess it's a question of trying until we find what suits. I often see people not go back to their docs after one bad reaction but there are often so many other options and some meds just suit some people better than others. It is always worth trying again even if, when we feel down and in pain, it is another added negative for us.

Hope it continues to work for you,
:hug:
Katharine
 

·
Registered
Joined
·
2,404 Posts
Hello Annette,

A diabetic diet is recommended by St. Thomas' for weight control on Pred. so you are probably doing the right thing.

Isn't it odd how are children don't really see us as people. I take a perverse delight in surprising mine periodically. Believe it or not I am toying with getting a tattoo on my thigh one of these days, just because I can!
I fancy one of a waterlily.

My children get fed up because all their friends think we are cool- they get fed up with being told they are lucky. I bet yours are the same, and you have always worked hard for them.

Perhaps this weekend you could do something frivolous just for you.
x Lola
 

·
Registered
Joined
·
376 Posts
Discussion Starter #12
Thanks for the link lazylegs...it seems to have good reviews. I know it's really early, but I do feel a bit of a difference already. So, it should be even better in a few weeks!!! Here's hoping.

Sorry to hear about your troubles Jyneal..Glad you are out of the wheel chair though. The teenage years are though that's for sure!

Katharine, the doctor mentioned nausea, but I've been really lucky. When I was on MXT, I had seriousl nausea, but I had stuff to take for it. The nausea did get better in time. I'm not taking metformin for my diabetes, so I can hopefully reduce the amount of insutlin I have to take and hopefully help reduce the weight gain. I'm only taking 1/2 tablet to start...I'm increasing it to
 

·
Registered
Joined
·
376 Posts
Discussion Starter #13
Oops..guess I was too long for a "quick" relpy LOL...

Anyway thanks for sharing. Things are looking a little better. It may take time I guess.

Annette
 

·
Registered
Joined
·
580 Posts
hi annette, i went through the same thing as you. i didnt care if i woke up the next day or not. i was so and am still depressed over my illness. i was the happiest when it was time to go to sleep because i didnt feel anything.

As soon as i got up in the morning i knew what my day was going to be like
i woke up took a few steps to the bathroom and my crying and depression started until i went back to sleep at night. i dont get too many aches and pain. but all the symtoms that i have been getting like my chronic shortness of breath, chest pain, blurred vision, headache and other strange symptoms.
have really put me in a state of depression and anxiety i even started to get painic attacks.

i recently found out that i cant stay alone. and thats not good.
i know what you mean about your daughters. my daughter is the same way but i think it mainly because they hurt to see us sick.
she tells me not to think that she doesnt care its just that it really hurts her to see me like this. she sometimes gives me a hug and tells me that its going to be ok. i hope that you can get some relief from the pain that youre been going through soon. with the proper medication things will get better for you.
good luck annette. lydia:):)
 

·
Registered
Joined
·
5,267 Posts
Oh I am sorry that you aren't feeling well and when it rains it pours ! I mean don't we all wonder how the heck we even live through all these things happening with our body and all of our surroundings and life changes. I often wonder if someone else was in my shoes if they would entirely give up. But then I think of all of you and you haven't given up. Your strenght is stronger than you realize. You have always been welcoming and comforting to everyone on here I know that you are a wonderful person. Wtih that said, you certaintly deserve much happiness and to be pain free. As for teenagers, they take the wind out from beneath my wings. :eek: Men say you will never understand woman. I say you will never understand teenagers. Especially this day and age, things are very different.

I hope you feel better really soon and that your financial situation changes for the best.
 

·
The Other Illinois Tammy
Joined
·
1,193 Posts
Nutty,
I am sorry that things seem to be happening all at once for you. We have to take things as they come and we have to find a way to handle it all. It is not easy to do but we are all here for you and we can figure things out together. I hope that you find some answers soon to easy your life and make it a little more fullfilling for you. Do what you can and leave the rest to god. Sometimes we have to ask for help before we can get help. Deep your chin up and your mind clear to focus on all the important things for you :innocent:. You set the pace for the rest of your family, when you are calmer and have things together than they will be calmer also.
 

·
Registered
Joined
·
376 Posts
Discussion Starter #17
Thanks Sushi, helloos and onetay,

Thank you for your kind words and support. I'm still hanging in there and not quite as bad as I was. I was at the doctors Thursday and am trying some new medication for the knee pain. It seemed to help the first couple of mornings, but doesn't last the day. Also, I can't seem to stay awake. Yesterday, I doubt if I was even awake for 5 hours and maybe 6 hours the day before. I'm assuming it's from the medication (cymbalta); although from what I read most people suffer insomnia. Could be depression maybe??? Don't know, but I hope it passes soon.

Thanks again.

Nutty
 
1 - 17 of 17 Posts
Top