Life..Love..Lupus

General
1

What tips or adjustments have you made in your daily life to make it a little easier for living with lupus? How have you changed how your outlook?

Monday, I was at a parent's meeting and they were electing board members and it got down to Fundraising Coordinator and Volunteer Coordinator. I would normally have jumped into Fundraising, but I knew that would just be too much stress for me. I was nominated for Volunteer Coordinator, I can handle that and it will be good for me.

I've changed how I think, and consider my own limitations and my health now and it feels good. I'm starting to find balance in my life.

Trisha

2

Trisha,

It took me a very long time to realize that I had anything at all to learn from this disease! Finally though, my outlook really did change and I started looking around me at what my life was made of. I pushed to do more when I was younger and sick because I had young kids. This time around, I'm worse off, my symptoms are worse, more organs involved etc... so I've had to take an honest look about me - and ask God - What am I learning here?

One BIG thing is that I had (during my well times) always run around at 120 miles per hour - doing, doing, going, going without ever stopping to smell the roses. I was rarely alone with myself and while I did some very good things, I never relaxed.

I have now learned to relax, meditate, make a daily gratitude list and tell God what I am thankful for each day. I DO ask God for things occasionally, but mostly for others. I try to stay in gratitude for everything - even the things that hurt, because I don't know what God means for me to learn here, OR what He might mean for someone else around me to learn.

This helps my depression, and it definitely takes practice!

During my well times, I was also very impatient. I had an important job and everything really needed to happen yesterday! Traffic was a time of nightmares for me! I had a fancy little car that sped in an out of rush hour! You know - that person who you hate in traffic? That was me!

I have learned patience and calm! I think I learned that before this time around, but it has much to do with Lupus! I am able to sit calmly in the car and be of rational thought. I realize that the day will go on when it is time for it to go on. God is in control of all the timing - not me and my fancy little car (that I no longer own due to this illness).

I could go on and on about other great things that this illness has changed me and the things I've learned through it. I believe it is all about how we look at it and that it takes time to really be able to see any of it as "learning". It helps me to be positive to see it that way though.

I'm far from perfect! I vent and have bad attitude days just like everyone else! My goal though is to remember what I'm learning from this because they are really good character traits and I like them. :)

Thanks Trish!

Hugs - Ang

3

I think your last sentence says it all.... FINDING BALANCE IN MY LIFE!

As my illness became worse, I realized my life would change forever. And to be honest with you, in some ways I am beginning to embrace my new life style, and enjoy it.

Because of my husband being a pastor, we hosted all the visiting pastors, missionaries, speakers, etc. We and our children were blessed but it was a lot of preparation and work. I had to back away and ask others to do it.

Taking food to others who were ill or had surgery was a special joy for me. I had to stop doing it. Shopping, plus standing on my legs to cook was no longer possible.

Leading organizations, speaking at conferences, and leading mission trips also came to a halt.

At first I felt lost as these things I loved to do slipped away, but at one of the conferences, as I was sitting watching the new leader take over, I felt a TREMENDOUS RELEASE that I no longer would need to do this.

I begin each day with prayer and devotional reading to help me in my walk and to accept my life as it is now.

I take fewer trip into town and redeem the time. Sometimes I go several weeks without going anywhere. Contentment resides in my life.

Reducing the stress level in everyday life has helped. I have simplified some things in my house to make the cleaning of it easier.

Using a roller walker to transport things from room to room - saves trips.

Turning on the answering machine when I am having a bad day.

I use an office chair in my kitchen so I can sit and do some things - mix a batch of cookies, organize my pantry, clean out lower cupboards, and put dishes in the dishwasher.

I have baskets to hold my books and items I use often by my recliner.

I've had to let go of things that brought much joy to my heart - trips with Bob to see our grands, having a flower garden, going out to lunch with friends, roaming in junk stores, hosting large groups in our home, cooking, shopping, handwork, and really cleaning!

But nothing is removed from our lives that something else cannot find its way into those empty places. I am thankful for my newfound friends on LWL who truly understand my illness and what I am going through. Praying for others is a special privilege. I have become more sensitive to the handicap and those who have chronic illness. Reading books and learning new things will always be a passion. Really having time for people instead of having to rush here and there...Very deep appreciation for my Bob who also has had to give up much but never complains and lovingly does the cooking, housework, shopping, and whatever else needs doing.

I am thankful for what I have learned through this whole experience...and I trust God to give me the daily wisdom I need.

4

Faye,

WOW that brought me to tears, but happy tears : ) I've used your suggestions. to set a timer for 10 minutes and do a little chore. That helps so much to break things down, and its not so overwhelming. I think with my fog, that sometimes simple things seem so LARGE, and just slowing down and doing a little at a time helps so much.

I agree with you, I think I am more sensitive to the handicap, and make eye contact instead of looking away from someone with a visible disability. And wondering how many are around me with an invisible disability as ours? Last week a friend told me about her 13 yr old step son, who will be going to a children's hospital for possible lupus. She has RA, and we've talked and she's helped me, and last week it was my turn to help her.

God Bless you Faye

Trisha

5

Ang,

That was an amazing post! I like the gratitude list that you mentioned, and is one thing I really need to start doing. Yesterday, basically all Hell broke loose. My world was falling apart. My husband wanted to throw my son out, because he says my son doesn't listen. My son called me and I left work. I have to fix everything, always.

My husband said I could go too. I was devastated, I have no money, no family and no where to go. It is tough to LET GO and LET GOD. I had to let my husband and my son work it out, and me not interfere. My son is still here, and so am I. I had a bad night, and I'm really, really tired. I don't know how this stress will affect me. I keep a symptons diary, so I can keep track of this now.

I am not perfect, and God isn't through with me yet, I'm still a work in progress. Things are always better when I get out of the way, and let God handle it.

Thanks for your wonderful post : )

Hugs to you and God Bless.

Trisha



Draginfli said:

Trisha,

It took me a very long time to realize that I had anything at all to learn from this disease! Finally though, my outlook really did change and I started looking around me at what my life was made of. I pushed to do more when I was younger and sick because I had young kids. This time around, I'm worse off, my symptoms are worse, more organs involved etc... so I've had to take an honest look about me - and ask God - What am I learning here?

One BIG thing is that I had (during my well times) always run around at 120 miles per hour - doing, doing, going, going without ever stopping to smell the roses. I was rarely alone with myself and while I did some very good things, I never relaxed.

I have now learned to relax, meditate, make a daily gratitude list and tell God what I am thankful for each day. I DO ask God for things occasionally, but mostly for others. I try to stay in gratitude for everything - even the things that hurt, because I don't know what God means for me to learn here, OR what He might mean for someone else around me to learn.

This helps my depression, and it definitely takes practice!

During my well times, I was also very impatient. I had an important job and everything really needed to happen yesterday! Traffic was a time of nightmares for me! I had a fancy little car that sped in an out of rush hour! You know - that person who you hate in traffic? That was me!

I have learned patience and calm! I think I learned that before this time around, but it has much to do with Lupus! I am able to sit calmly in the car and be of rational thought. I realize that the day will go on when it is time for it to go on. God is in control of all the timing - not me and my fancy little car (that I no longer own due to this illness).

I could go on and on about other great things that this illness has changed me and the things I've learned through it. I believe it is all about how we look at it and that it takes time to really be able to see any of it as "learning". It helps me to be positive to see it that way though.

I'm far from perfect! I vent and have bad attitude days just like everyone else! My goal though is to remember what I'm learning from this because they are really good character traits and I like them. :)

Thanks Trish!

Hugs - Ang

6

Hi Trisha,

You do have to look at issues you can handle...well besides your body the main issue is your brain with how it gets affected.

My main thing i've had to alter is slowing down which as come to a really slow pace with my legs and having OCD does'nt help me one bit, affects me mentally and like yourself you can only take issues on which tyou think you can cope with.

Love Terri xxx

7

Faye!

I was just blessed to read your response to this post! God is Good!

Hugs - Ang



Faye said:

I think your last sentence says it all.... FINDING BALANCE IN MY LIFE!

As my illness became worse, I realized my life would change forever. And to be honest with you, in some ways I am beginning to embrace my new life style, and enjoy it.

Because of my husband being a pastor, we hosted all the visiting pastors, missionaries, speakers, etc. We and our children were blessed but it was a lot of preparation and work. I had to back away and ask others to do it.

Taking food to others who were ill or had surgery was a special joy for me. I had to stop doing it. Shopping, plus standing on my legs to cook was no longer possible.

Leading organizations, speaking at conferences, and leading mission trips also came to a halt.

At first I felt lost as these things I loved to do slipped away, but at one of the conferences, as I was sitting watching the new leader take over, I felt a TREMENDOUS RELEASE that I no longer would need to do this.

I begin each day with prayer and devotional reading to help me in my walk and to accept my life as it is now.

I take fewer trip into town and redeem the time. Sometimes I go several weeks without going anywhere. Contentment resides in my life.

Reducing the stress level in everyday life has helped. I have simplified some things in my house to make the cleaning of it easier.

Using a roller walker to transport things from room to room - saves trips.

Turning on the answering machine when I am having a bad day.

I use an office chair in my kitchen so I can sit and do some things - mix a batch of cookies, organize my pantry, clean out lower cupboards, and put dishes in the dishwasher.

I have baskets to hold my books and items I use often by my recliner.

I've had to let go of things that brought much joy to my heart - trips with Bob to see our grands, having a flower garden, going out to lunch with friends, roaming in junk stores, hosting large groups in our home, cooking, shopping, handwork, and really cleaning!

But nothing is removed from our lives that something else cannot find its way into those empty places. I am thankful for my newfound friends on LWL who truly understand my illness and what I am going through. Praying for others is a special privilege. I have become more sensitive to the handicap and those who have chronic illness. Reading books and learning new things will always be a passion. Really having time for people instead of having to rush here and there...Very deep appreciation for my Bob who also has had to give up much but never complains and lovingly does the cooking, housework, shopping, and whatever else needs doing.

I am thankful for what I have learned through this whole experience...and I trust God to give me the daily wisdom I need.

8

Trisha -

Thank YOU for posting back such an open message about your day. It takes great strength to be vulnerable in public and step out in trust like that! I'm happy that you trust us!

I know exactly what it feels like to have no money, nowhere to go and really no valid family to depend on. It can make you feel desperate and very stressed out, trapped. God is the only one who is consistently there for us to depend on. He puts people in our lives though who we can talk to and count on - He has shown me that first hand and I know He blesses us in that way!

I am a work in progress too Trisha! I hope I always am! :) THAT means that I will always be in direct interaction with God and He will always be with me! That is something to add to my gratitude list!

I am so sorry for the way your day went yesterday. I am praying for you and also for your husband and son.

Hugs and Love - Ang

sunrisetrisha said:

Ang,

That was an amazing post! I like the gratitude list that you mentioned, and is one thing I really need to start doing. Yesterday, basically all Hell broke loose. My world was falling apart. My husband wanted to throw my son out, because he says my son doesn't listen. My son called me and I left work. I have to fix everything, always.

My husband said I could go too. I was devastated, I have no money, no family and no where to go. It is tough to LET GO and LET GOD. I had to let my husband and my son work it out, and me not interfere. My son is still here, and so am I. I had a bad night, and I'm really, really tired. I don't know how this stress will affect me. I keep a symptons diary, so I can keep track of this now.

I am not perfect, and God isn't through with me yet, I'm still a work in progress. Things are always better when I get out of the way, and let God handle it.

Thanks for your wonderful post : )

Hugs to you and God Bless.

Trisha



Draginfli said:

Trisha,

It took me a very long time to realize that I had anything at all to learn from this disease! Finally though, my outlook really did change and I started looking around me at what my life was made of. I pushed to do more when I was younger and sick because I had young kids. This time around, I'm worse off, my symptoms are worse, more organs involved etc... so I've had to take an honest look about me - and ask God - What am I learning here?

One BIG thing is that I had (during my well times) always run around at 120 miles per hour - doing, doing, going, going without ever stopping to smell the roses. I was rarely alone with myself and while I did some very good things, I never relaxed.

I have now learned to relax, meditate, make a daily gratitude list and tell God what I am thankful for each day. I DO ask God for things occasionally, but mostly for others. I try to stay in gratitude for everything - even the things that hurt, because I don't know what God means for me to learn here, OR what He might mean for someone else around me to learn.

This helps my depression, and it definitely takes practice!

During my well times, I was also very impatient. I had an important job and everything really needed to happen yesterday! Traffic was a time of nightmares for me! I had a fancy little car that sped in an out of rush hour! You know - that person who you hate in traffic? That was me!

I have learned patience and calm! I think I learned that before this time around, but it has much to do with Lupus! I am able to sit calmly in the car and be of rational thought. I realize that the day will go on when it is time for it to go on. God is in control of all the timing - not me and my fancy little car (that I no longer own due to this illness).

I could go on and on about other great things that this illness has changed me and the things I've learned through it. I believe it is all about how we look at it and that it takes time to really be able to see any of it as "learning". It helps me to be positive to see it that way though.

I'm far from perfect! I vent and have bad attitude days just like everyone else! My goal though is to remember what I'm learning from this because they are really good character traits and I like them. :)

Thanks Trish!

Hugs - Ang

9

Oh Trish, I am so sorry about what you had to face yesterday. Relational difficulties get us in the gut! And it is not good at all. Feeling poorly doesn't help with our perception and how we handle things. The verse I live by is "Be still and know that I am God." To me it means just that...be still..sit in His presence...stay calm...allow God to take charge. He doesn't mess up things like we do. And because He is God, He is working in ways we cannot see. He sees our situation from above - the beginning from the end. Take a deep breath and get your inner strengh before you speak.

I think letting them work on the issues involved is good. It is good for your son ( if not abusive).. to support your husband and encourage him to build a good relationship with your son. Your son's security will come from you and your husband being united in the way you handle things concerning him. Perhaps they could both benefit from counseling. Blended families are a challenge and take a lot of wisdom. Some churches offer free help to families.

No home is big enough for a rebellious child. Home is to be a haven of rest and a safe place for all who live there. Your health will be greatly affected by the stress. Plus it will take its toll on your marriage. I know your son and marriage are dear to you. Things said in the heat of an argument need to be forgiven. And we all need to learn to say I am sorry...in humility..if needed.

I hope the atmosphere in the home is better today. I've known of similar situations that were worked out and the father son relationship is very strong today. Don't give up. I will be praying for all of you.

Love to you,

Faye


10

Thanks for your support ladies, I appreciate it. I'm on day 3. My husband is angry at me, he won't talk to me. I can feel how the stress plays on my body. I had a terrible day at work Friday. I had put a part back in the wrong place, and my supervisor said he appreciated me wasting his time and threw the parts down at me. I was humiliated in front of a couple of co-workers, and the anger in my supervisor's eyes really upset me. I fought back tears most of the day.

I had the house to myself most of the day Saturday. I was able to clean at my leisure, and rest as well. Looks like I have the house to myself again today? I think I'll take the little dog out for a short walk. I need to clear my head.

love to you all

Trisha

11

Hi Trisha,

Your welcome from us all and you always now we love you and will help best possible with advice.

Oh i am sorry your hubby as stopped talking to you, now that would drive me mad especially me knowing there's only me and ste in the place.

Oh bless you mate, it's terrible when your snapped at because your not on the ball and especially being showed up and these issues don't help with stressing us or getting down.

Trisha i know you love you piece and quiet to do what you like but try and make up with your hubby mate, my heart goes out to you.

Love you to bits & a large group hug from we all xxx

Group Hugging animated emoticon
12

Hi Trisha,

My doctor has told me again and again that stress can and does cause flares. I am sorry that you are having trouble in your marriage right now. I know that fighting with my husband usually puts me in a flare. Maybe you two could go to councelling? As for your post- have I changed my outlook? Yes I am constantly reminding myself to try to focus on what is important in life. I have major struggles with balance in my life as I have a very demanding full time job a two year old daughter and a husband who commutes and works long hours. I barley have energy for my job and it takes every bit of will power to take care of my daughter after work without crying out of exaustion and pain. I do nothing outside of work and go to bed as soon as my husband gets home. I am thinking i need to make some adjustments but I love my job (both the work and the pay) and would be depressed if i sat around all day. I have had to give up so many thing I have loved (running, vacationing in sunny locations, bread, time with friends, gardening..........). I guess acceptance and finding a balance is a process and i think i have a long way to go.

I hope you are feeling better. Remember you are not alone!

Meg

13

Meg

Yes, today I can feel how the stress affects me. You have a lot on your plate! I understand your frustration, I used to have a more demanding job. I fear that I can't do that anymore, I am second guessing myself even at the job I have now. Its tough that we have to give up so much, but I like what you said about focusing on what is important in life. Acceptance and balance is a day to day thing. Somedays are better than others.

I am feeling better, and I appreciate your input : )

Trisha

14

He Terri

I appreciate the group hug : )

We talked a little bit, but not much. Tomorrow is another day.

Love to you my friend

Trisha
Tez_20 said:

Hi Trisha,

Your welcome from us all and you always now we love you and will help best possible with advice.

Oh i am sorry your hubby as stopped talking to you, now that would drive me mad especially me knowing there's only me and ste in the place.

Oh bless you mate, it's terrible when your snapped at because your not on the ball and especially being showed up and these issues don't help with stressing us or getting down.

Trisha i know you love you piece and quiet to do what you like but try and make up with your hubby mate, my heart goes out to you.

Love you to bits & a large group hug from we all xxx

Group Hugging animated emoticon
15

Hello Trisha,

I am pleased you managed just to talk abit because that leads to be issues and your right tomorrow is always another day on everything we cross.

All my love mate. xxx

16


I think I've had a small flare this week. I've had barely enough energy to go to work, and then when I'm home that's it. I actually went to bed at 8:30 last night, and woke up at 6:30 this morning. That's the longest I've slept forever lol. My legs and feet have been on fire, and I step up a ladder and felt it later. Sorry I haven't been on all week : (

Trisha

17

Hello Trisha,

I am sorry mate your not feeling well and with your symptoms it sounds like a flare and especially sleeping like you have done but the rest will do you good on helping to recover.

If you can afford to leave work alone and they're ok with it...then i'd have a few days break to help you even more.

Love & hugs Terri xxx