Where is the quality of life?


#1

I am angry, depressed and suicidal… Where I used to be a very out going, active, successful woman that enjoyed life. I now am a prisioner to Lupus. With lupus came kidney disorder, diabeties, seiziers, and the list goes on. The highlights of life seem to be doctor visits, hospital stays, and so many different medications I need a suite case to carry them all. How does one not pray for the end?


#2

Hello, I am unavailable to read your message at this time.


#3

Frogee, sometimes you have to be creative to get that quality of life. I was diagnosed 18 years ago. I feel better and can do more now than I ever though possible. How did I do it? By making choices. There are always choices to make and always consequences to go with them. You can decide you have Lupus and learn what causes flares, fatigue, etc. Our you can let Lupus have you. Right now it sounds like you have opted for the second choice.

If you are newly diagnosed it will take some time for the docs to find the right regimen of meds for you. Once you get that and make sure you get your rest and don’t over do things will start looking better. Relieve stress from you life. What causes you stress and what can you do to eliminate it? For me, I was never a city person, so we finally bought a house semi in the country. We have 2 1/3 acres and it’s so peaceful. I love it out here and moving eliminated a LOT of stress out of my life.

There was a time I did pray for the end but that is not the answer. I believe we were put here for a reason. I believe my reason is to have Lupus, educate people about it and I have written a book that I hope to get published this year.

Pay attention to your body. Keep a journal and you will start to see some patterns of how you feel, what foods bother you in someway (so you can avoid them), et. Talk to your doctors, the suicidal part can be very tricky and they definately need to know you are feeling that way. It is possible to have a life with Lupus but you have to work at it. No one said Lupus was easy.

I hope this helps.
Love and hugs,
Ran


#4

I am angry, depressed and suicidal… Where I used to be a very out going, active, successful woman that enjoyed life. I now am a prisioner to Lupus. With lupus came kidney disorder, diabeties, seiziers, and the list goes on. The highlights of life seem to be doctor visits, hospital stays, and so many different medications I need a suite case to carry them all. How does one not pray for the end…froggee

Dear Froggee,

As far as activities, I , too, had to give them up. What I did was to do different ones. Please tell us which ones you enjoyed, why n ot let us know. We can help by telling us everything.

Diabetis can be controlled by diet. Some preservatives in foods can cause a flare too. Make a list of everything you eat. Do you have a GP for your diabetis? A general practioner might not understand the correlation between food and lupus.

There are meds for the seizures. Stress will also bring on seizures in a lupus patient OR in a person without lupus.

Are you taking any valium and anti-depressants? I had to go through so many different kinds of anti-depressants because I was having side affects from so many.

As far as your kidney’s, what is the recommendation on how to treat this?

Please write more. WE are a group that understands how you feel.


#5

Froggee…I know exactly how you feel, and am following the same pattern as you except I haven’t started having seizures yet…where is the quality of life???

I know it’s hard - and to be flat honest I HAVE tried to commit suicide back a couple of months ago - but I have no memory of it. I had gotten so depressed and so lost because of all the meds I was taking. I was to the point I was losing days - forget just a little memory loss. As far as mood swings - I did and said many hurtful things to the people I love the most. I had begged for almost two MONTHS for something for depression but my doc didn’t want to give me anything because I was already on so many meds to begin with (I’m on even more NOW…). Anyways - when I did this, I was NOT in control of myself, I did not know what I was doing, hence the no memory…which is probably a good thing - the not remembering part. It breaks my heart to know I did this to my family even though if I KNEW what I was doing I never would have done it. I was diagnosed with chemical depression - my attempt and my depression is directly associated with the steriods and chemo I’ve been on…not counting Lupus makes you depressed in and of itself. I was hospitalized for 5 days…and am now on an antidepressant which has made a HUGE difference in my moods, my depression, everything. It’s still hard - but I’m coping a lot better. I’m also in therapy which I highly recommend.

Hang in there - you are in my thoughts and prayers…it’s not easy, but you can make it through - even on the bad days. As long as we take a breath there is still hope…just don’t lose site of that. And if you do (like I did, even if I didn’t mean to) then I hope that you have loved ones around you like me who are watching out for you even when you can’t do it yourself - it’s the only thing that saved me when I couldn’t save myself. I thank God for that. We don’t always know the reasons why - but as long as we are here we have our stories to share with each other and to help each other through the tough times…this is my first post, I just found this place, and I’m glad I did. Hang in there =)!!!


#6

froggee,
Hang in there. When i was in so much pain and very tired all the time
the one thing that kept me going was the fact it was me going through
this and not a child. The pain was so bad i remember telling my husband
i would sell my soul to the devil just to get rid of it. Of course he said he never wanted to hear that again. Luck for me he was their for me. All you had to do was look at me and you new i was sick. The thing was fighting it and getting it under control. It took several months, changes in medication
but i finally came around. I still hurt and still have bad days but it’s not as bad and intense as before. My sheltie new i was sick, he stayed by my side the whole time. I kept telling him once i was better we would go for walks, and we do now.Watch the stress levels and what triggers your
flare ups.

Good luck,
Stephanie Vinson


#7

Froggee,

I am new to this forum but I think most people with Lupus go through a lot
of emotions and life changes. I am so sorry that you are feeling
overwhelmed and depressed. I’ve had my moments like that too. I hope you
find a doctor who is right for you and will get all of your symptoms under
control.

I joke about my trips to the big city, to go to the doctor, being the
highlight of my social life. It is part of my life, so I make the most of
it, my mom, sister and daughters and I always make a day of it, eat out,
shop and then coffee and dessert. It is hard to keep the glass half full
but I think it is harder to live with it half empty. Making choices can be
hard, changing is hard but there can be great outcomes. I was diagnosed 4
years ago but of course had symptoms long before that. I had to learn to
rest and chose my activities and it was an adjustment for my family too. I
walk with a cane to keep my need for pain killers down. I have a great boss
and work part time at a job that I love. I hit some speed bumps in my road
but I have been able to do some amazing things that I thought I would never
do.

I had a cousin who had cystic fibrosis and was in and out of hospitals her
whole life, she took a lot of medications every day. I think she taught me a
lot about making the most of every day. Talking with others who truly
understand is the best resource I’ve found. Be honest with your doctor
about your feelings, there are things that they can do to help. The
outgoing, active successful woman that you were, will figure out what works
best for you. Please give yourself some time, find some help, whether
through doctors, medication, support group, family, friends or my favorite,
chocolate. There are lots of options to try, just don’t give up.

Hugs,
Cammie

On 6/10/07, froggee lupus-cpt4179@lists.careplace.com wrote:


#8

Frogee,
You’ve gotten some really great responses here.
But let me remind you once again - it does get better - find yourself a good rheumatologist - one that will listen to you when you tell him what’s going on with your body and in your life. Both are important. Your doctor should ask you not only how you’re doing physically, but also what you’re doing in your life. Obviously, you’re not doing well and could benefit with some anti-depressants adn possibly going to a local support group or one on one couseling.

Yes, you used to be an active successful outgoing woman that enjoyed life - and now you’re different. We all did. I’m not going to tell you to get over it - eventually you will, but it will take time, just as all things do.
We all have to learn to live within our bodies within this diseases that we have.
They disrupt our lives, our relationships, our jobs, our finances, our dreams, our joys. And they leave us having to start all over again. So, we find a way to do just that, somehow.
You found Careplace - that’s a start.
Now, find something else.
I did it by finding a purpose to each day. Maybe it’s getting dressed. Maybe it’s taking a shower. Maybe it’s filling your pill box! But find a purpose, then do that one thing. When you try to do it - you’re joining the human race - all of them wake up each day with a purpose to their lives - and now you are. Then strive to fulfill that purpose. If you can do it - wonderful! You’ve done it! Be proud of yourself! It’s one thing you’ve done - you can mark it off of your list for the day - honestly. Not the rest of the rat race can always mark off something on their to do list!
If you just can’t complete it - keep trying through out the day - every hour - just try. Like that ant and that rubber tree plant.
(sorry - I’m horribly optimistic) If you don’t get it done today - then you have tomorrow. Do if tomorrow. But keep trying. Have a goal.
Then tomorrow - add another goal, add another purpose. Day by day, you’ll have purpose to your life.

It sounds like a simple solution to a massive problem, but it’s a start.

As you go thru your treatment for your illness, you’ll find the right ‘cocktail’ of meds that will help you feel better - find the right docs - it’s hard and it’s a struggle, but it’s worth it. When you get your team of docs together, and they’re all working with you to get you to feel your best - you’ll look back on this and you’ll feel glad that you struggled thru. Then you’ll be able to help the next person struggling with this same issue get over this huge hurdle.

It will pass - it just takes time, and a bit of work.

linda


#9

Froggee,

Let me encourage you to hang in there. There is a purpose in life for all that we go through. One just needs to maintain hope and keep looking for ways to make if better.

My ex-wife and mother to my kids, also has Lupus as well as Aspergers Syndrome. It has taken her several years to learn the things that trigger her symptoms. Today, she still has flare ups but not what they were when we were married. We both now know, in part, the cause of a lot of mood and behavior issues when we were married. She had self-abusive tendencies to go along with it all.

To make things worse, we are the parents of two sons affected by a rare genetic disorder. Both boys are severely mentally and physically challenged and both are non-verbal. She was a stay at home mother with the kids and I don’t think this was a very good combination for her. I is very challenging and has days of being overwhelmed. I am now the single parent caring for the boys but she sees and has contact with them on the weekends. She still can not handle them on her own without help for more than a few hours at a time and then only one at a time. All of this makes her very sad at times. To love them as much as she does but not be able to care for them in the way that she would like to do. We get along very well despite being divorced and I try to assist and encourage her involvement with the boys as much as possible.

There a many foods that she must avoid or it will cause her problems. Most carbohydrates for one. Refined sugar, chocolate and coffee are a few others. She is now basically on an organic vegetable diet along with her meds and things have been much better for her.

Stay in there….keep working on identifying the triggers, consult with your doctor on all issues and make sure you let him know about the depression issue. We want you to become an expert on lupus and help support others new members who join site. Your family needs you….We need you.

Please feel free to contact me at anytime if you need someone to talk with. You can reach me on my cell at 214-994-8415 or by email at CarePlace@gmail.com

My ID at careplace is DHughes