November 14, 2011
Hey Everyone
Do I wish I did not have to engage my family's help? YOU BET! But there are SO many good reasons to ask them to help and only one reason (I can think of currently that I was using) NOT to have them help. The reason not to have them help? Guilt. Pure and simple. I felt guilty that I am chronically ill and I can not vacuum the entire house all at one time. I have been wanting to (for a long time) ask my family to take on the more strenuous jobs in the house and me take the lighter tasks so that our house work would get done and our house would run more efficiently. The guilt I felt at it NOT all getting done was causing stress which was causing flares which was taking energy which was exactly counterproductive to helping me follow the biblical principals I feel convicted to follow. I knew that it was time to step up to the plate, get some courage, swallow my pride, and ASK!
Here is the deal. We are a family. I totally believe it is my job to teach my children how to clean, cook and be self-sufficient when they leave this home. If they are not given opportunities to do so here, then they will not know how when they get off to college and live on their own. Plus, it is important to learn team work. It is just not the job of the parents to do ALL the laundry, ALL the cooking, ALL the cleaning. Now granted, it is hard with the amount of homework they give our kids today to get a lot done during the week, but if they can find time to spend hours on Facebook, texting, and playing Angry Birds (LOL) then I am thinking they can clean their own bathroom, and learn responsibility in the process.
My husband is the best laundry doer you have EVER seen! So, I asked him if he wanted to take over that task... He agreed... and our laundry is staying caught up (I actually do feel guilty about this...even though he agreed, I secretly want to take this task back at some point) I also asked him if he would be responsible for vacuuming the house one time a week...then if I had the energy I could do a room here or there during the week... but at LEAST, it would be completely done once a week!
The other big thing I had trouble with that I finally asked help with is grocery store trips. I had almost quit cooking like I was supposed to because after shopping for an hour, I am in such pain, that it is really hard. Therefore, I negotiated with him that I would go back to making my menu plans like I had previously and asked if he would be willing to go to the grocery store once every one or two weeks. He has agreed. Last week... I had everything I need to make five meals and then we had left-overs! It was awesome to have home-cooked meals all week long and to cook meals I had not cooked in a long time with my kids saying "mom, this is AWESOME! Why haven't you made this before!"
I still have chores, but my dream is that by engaging the rest of the family in helping, I will be able to have enough energy left over to take care of some neglected tasks like cleaning out the fridge, cleaning out closets and finally taking care of the donation items in the garage that need to be cataloged and given to charity just to name a few. I have learned and admitted that I cannot do it alone...I just cannot. It was finally time to set my pride and guilt aside and ask. I was very pleased with how it went and was not surprised that my pile of tasks/chores still out-numbered everyone else's. But now I feel that what I have, I can manage.
Whether you are a single mom, married with or without children, learn YOUR own limits and admit that you have limits. And remember that everyone's limits are different. There are many similarities, but we each have individual diseases, but I do believe the principal is the same. The other thing is understanding and communicating with your husband about what they feel they are good at and what they are willing to do. I think it is so very important to help them to understand if they take over the few tasks or chores that are overwhelming you the most, it will benefit the family in the long run by reducing your stress, and we all know that reduced stress decreases the chance of flares which, of course helps keep us at our healthiest and with more energy!
I am very, very excited for sitting down with my husband and partnering with my best friend! He said it would show him that I love him if I managed our household, and what I did is very much a part of that. I didn't say manage HIM... I engaged him in the process. We are still working out the kinks, but the key is WE.....WE are working out the kinks! Always remember that they can never walk in our shoes and to remember to show them grace because of that! One more word to you guys from the Word in this same vein....edify them with your words and praise them for all they do for you, even if you are in a time of struggle...
Eph. 5:29 "Let no unwholesome word proceed from your mouth, but only such a word as is good for edification according to the need of the moment, that it may give grace to those who hear."
Many blessings to you today! I am praying for all who read this!
The goal: To encourage other people with chronic illnesses by sharing my journey. I also hope to encourage people that they are not alone on this walk and can rely on Christ. Phil. 4:13 and that they are fearfully and wonderfully made. Psalm 139:14.
Nov 14, 2011
Oct 19, 2011
THE IMPOSSIBLITY OF BEING PERFECT
I was SO excited the other day when I went into Wal-Mart and ran across a small, uncomplicated afghan pattern book, because after learning to crochet about 15 years ago, I was ready to pick it up again and keep being was creatively active as possible. At first, I was blown away by the short-hand they used in the pattern book, but after a little patience I begin to decipher and had completed my first 10 rows. BUT something was NOT quite right... for some reason, my blanket was taking on an angled appearance, so I counted the number of stitches in the first row and then the number of stitches in the last row I completed and realized that somehow I had been adding extra stitches on to every row. Well, my perfectionist nature was quite frustrated and first, as you can well imagine! I had go back and count the stitches in each row until I found where I had deviated from the pattern and get back on track. In the midst of pulling the yarn out, I made another mistake and did not wind the yarn in a neat fashion and ended up with a tangled mess. This was mistake number two and I spent hours trying to unwind that mess before I just let the mess go and cut it off and started with another skein of yarn.
Perfectionism...the angst of anyone who ends up with a chronic illness and desires to be the best mother, wife, Christian.... CONFESSION time.... my house is not clean all the time, there are loads of laundry to do AND I do not get dinner made every night!! Most days I feel like I fall so far short of what God wants me to be in Proverbs 31 that I am frustrated and feel guilty. I still do not, on most days, fully accept that I have an illness that has radically altered my ability to function on all cylinders. It is simply not possibly. But, my mind says "All things are possible through Him"....so I ought to, right?? I guess I don't have enough faith, right? I guess I am falling short in come capacity in my Christian walk or I would be able to just push through and be the Keeper of my Home that I was before this disease begin to ravage the inside (and a few spots on the outside) of my body. Do I truly believe that what Christ wants me to believe?
If I have asked on more than one occasion to be healed and healing has not come, then I must believe that God is allowing this disease to continue for the time being. My final healing may not come until I am in heaven. I believe He is the Great Physician and could but speak a word and I would be restored. Instead, I must choose to look for the reasons, the purposes and believe wholeheartedly that He will never change from who is He has said He will be from now until the end of time.
Where do I start redoing my ability to be the most excellent keeper of my home that I can be. See I am called to be so much more than JUST a cook, cleaner and maid, which is how I used to view my jobs at home.... let me share what God says on the matter
Titus 2:3-5 "Older women, likewise are to reverent in their behavior, not malicious gossips, nor enslaved to much wine, teaching what is good, that they may encourage the young women to love their husbands, to love their children, to be sensible, pure, workers at home, kind, being subject to their own husbands, that the word of God may not be dishonored."
In other words, not only do we do the acts of service at home, but we are to be loving, to be kind, to be pure and then to teach our young women these things as well... WOW! How awesome is all this and what a blessing!
Ladies, your jobs are SO important whether you have a chronic illness or not! God has not left you! When I first discovered how important my work at home was to my Heavenly Father, I was NOT completely sick yet... I was getting there...but He allowed me to sit under an awesome teacher and be taught about being content. It will take relying on Jesus heavily each and every day, Jesus says:
Matthew 11:28-30 "Come to me all who are weary and heavy-laden, and I will give you rest. Take my yoke upon you, and learn from Me, for I am gentle and humble in heart; and you shall find rest for your souls. For my yoke is easy and my load is light"
We are also told to ask for wisdom and it will be given to us.
James 1:5 But if any of you lacks wisdom, let him ask of God, who gives to all men generously and without reproach and it shall be given to him."
When we are diagnosed we are just overwhelmed! We do not know what it all means. How will we be the wife, the mother, the single mother, the grandmother, whatever our role is at that time....Ask God to help you for wisdom and start your day with Him. My first bit of advice is you are still just as worthy as you were, give your weariness to Jesus and He will refresh you, and the wisdom we need is found in Him. I would be remiss if I did not say to try and start your day with Him.
Blessings my sweet friends!
Only by HIS grace do I stand!
Diane
Perfectionism...the angst of anyone who ends up with a chronic illness and desires to be the best mother, wife, Christian.... CONFESSION time.... my house is not clean all the time, there are loads of laundry to do AND I do not get dinner made every night!! Most days I feel like I fall so far short of what God wants me to be in Proverbs 31 that I am frustrated and feel guilty. I still do not, on most days, fully accept that I have an illness that has radically altered my ability to function on all cylinders. It is simply not possibly. But, my mind says "All things are possible through Him"....so I ought to, right?? I guess I don't have enough faith, right? I guess I am falling short in come capacity in my Christian walk or I would be able to just push through and be the Keeper of my Home that I was before this disease begin to ravage the inside (and a few spots on the outside) of my body. Do I truly believe that what Christ wants me to believe?
If I have asked on more than one occasion to be healed and healing has not come, then I must believe that God is allowing this disease to continue for the time being. My final healing may not come until I am in heaven. I believe He is the Great Physician and could but speak a word and I would be restored. Instead, I must choose to look for the reasons, the purposes and believe wholeheartedly that He will never change from who is He has said He will be from now until the end of time.
Where do I start redoing my ability to be the most excellent keeper of my home that I can be. See I am called to be so much more than JUST a cook, cleaner and maid, which is how I used to view my jobs at home.... let me share what God says on the matter
Titus 2:3-5 "Older women, likewise are to reverent in their behavior, not malicious gossips, nor enslaved to much wine, teaching what is good, that they may encourage the young women to love their husbands, to love their children, to be sensible, pure, workers at home, kind, being subject to their own husbands, that the word of God may not be dishonored."
In other words, not only do we do the acts of service at home, but we are to be loving, to be kind, to be pure and then to teach our young women these things as well... WOW! How awesome is all this and what a blessing!
Ladies, your jobs are SO important whether you have a chronic illness or not! God has not left you! When I first discovered how important my work at home was to my Heavenly Father, I was NOT completely sick yet... I was getting there...but He allowed me to sit under an awesome teacher and be taught about being content. It will take relying on Jesus heavily each and every day, Jesus says:
Matthew 11:28-30 "Come to me all who are weary and heavy-laden, and I will give you rest. Take my yoke upon you, and learn from Me, for I am gentle and humble in heart; and you shall find rest for your souls. For my yoke is easy and my load is light"
We are also told to ask for wisdom and it will be given to us.
James 1:5 But if any of you lacks wisdom, let him ask of God, who gives to all men generously and without reproach and it shall be given to him."
When we are diagnosed we are just overwhelmed! We do not know what it all means. How will we be the wife, the mother, the single mother, the grandmother, whatever our role is at that time....Ask God to help you for wisdom and start your day with Him. My first bit of advice is you are still just as worthy as you were, give your weariness to Jesus and He will refresh you, and the wisdom we need is found in Him. I would be remiss if I did not say to try and start your day with Him.
Blessings my sweet friends!
Only by HIS grace do I stand!
Diane
Oct 18, 2011
Loving our kids with kindness....the countering of bullying
October 18, 2011
I had started a blog on perfectionism....and I know I am to write that...maybe tomorrow. Sometimes it takes a little time to understand and hear what I am supposed to write about, so I prayed and said "SHOW me what to write about". And because He is faithful, He did just that. My heart is just overwhelmed right now. I am recovering from having diagnostic procedures under general anesthesia today, so I was watching a little Dr. Phil, a show on bullying and my heart began to ache again. Most of us, if we have multiple children, or even just one have not been able to dodge the bullying bullet with one or more of our children. OR we may have a niece or nephew that has had serious issues with it or another family member. More of our children are feeling so discouraged and without hope that they are choosing suicide as an option. In our medium-sized school system alone we have had five suicides in the last two years.
What can I do to help my kids in their battle in the trenches... and bullying happens in public school, Christian School, Private School and even our own churches. I do not mean to sound negative, but I just want to say it is a global problem. There are four kinds of kids: the bullies, the bullied, the bystanders, and those that stick up for the bullied (this is a small but growing group). How can we help? What can we do? First off, our homes need to be a safe place to land... Proverbs 31:26 "She opens her mouth in wisdom. And the teaching of kindness is on her tongue." When our kids walk through that door or we pick them up, we need to be ready to listen, ready to support, and let our kids know how much they are loved at home. In this crazy, busy world we lead, we need to do our best to aware of changes in our children's personalities. When they are ready to talk, try and slow down and listen.
I had started a blog on perfectionism....and I know I am to write that...maybe tomorrow. Sometimes it takes a little time to understand and hear what I am supposed to write about, so I prayed and said "SHOW me what to write about". And because He is faithful, He did just that. My heart is just overwhelmed right now. I am recovering from having diagnostic procedures under general anesthesia today, so I was watching a little Dr. Phil, a show on bullying and my heart began to ache again. Most of us, if we have multiple children, or even just one have not been able to dodge the bullying bullet with one or more of our children. OR we may have a niece or nephew that has had serious issues with it or another family member. More of our children are feeling so discouraged and without hope that they are choosing suicide as an option. In our medium-sized school system alone we have had five suicides in the last two years.
What can I do to help my kids in their battle in the trenches... and bullying happens in public school, Christian School, Private School and even our own churches. I do not mean to sound negative, but I just want to say it is a global problem. There are four kinds of kids: the bullies, the bullied, the bystanders, and those that stick up for the bullied (this is a small but growing group). How can we help? What can we do? First off, our homes need to be a safe place to land... Proverbs 31:26 "She opens her mouth in wisdom. And the teaching of kindness is on her tongue." When our kids walk through that door or we pick them up, we need to be ready to listen, ready to support, and let our kids know how much they are loved at home. In this crazy, busy world we lead, we need to do our best to aware of changes in our children's personalities. When they are ready to talk, try and slow down and listen.
Secondly, KNOW your schools bullying policy. If you end up with a child who is being bullied, do not be afraid to take up for them with school officials. In most schools today, they have strict policies. If yours does not and your child is being bullied, then do not be afraid to be proactive. Understand that NO ONE will protect your child like you will.
We have had two of our three children experience bullying. In one case, we left the school entirely because there was no bullying policy in place, and the administration was not helpful or receptive and it was a very small group of people. The second thing we did was enlist the help of our youth minister and let him know what was going on and a few youth mentors took our son under their wings. This was life-changing for him. Changing schools in 8th grade made the difference for him, and he is thriving today in college. However I realize this is not always possible or the only answer.
Our second child has been teased and bullied, but she is one that is likely to take on her own bullies. She also won't tolerate bullying around her. She will take up for anyone she sees being bullied. But as strong as she seems, those words STILL hurt, and I still stay in touch emotionally with her the best I can. My daughter having been bullied is causing her to want tojoin an anti-bullying club in our school and has served to make her stronger (I DON'T wish bullying on anyone, but I am proud of this response in her life) Stay in touch with them, get counseling the child needs it,.
What if you HAVE a bully??? This is a LITTLE harder to handle. The first question is why? Why is your child bullying other kids? Usually kids bully either because they are insecure, they have been bullied themselves, they are following the crowd, there is tension in their life, they like power over other people, and it also can be leadership potential gone VERY wrong. I will not say much on this issue, but if your child has been pulled in for this, or you notice this potential, please address it. I truly believe that bullies are kids who are really hurting inside and hurt other kids to make themselves feel better. They require everything that the bullied kids need... a safe place to land... attention, their parents to listen and understand...but they do need to be taught accountability for their actions and the effect their actions have on the kids they hurt.
All of our kids probably float through these stages as they go through their school years. If we are wise, we teach from such a young age how valuable they are to The One and The Only, and that every person created is a unique creation of God created in Him image. Therefore they should be treated as such. At home, we do our best to model no bullying in our marriage relationships. We don't let them bully each other. Try to resolve conflicts without the use of anger. If we, as parents, love them as they are to the best of our ability, we give them a firmer foundation to stand upon, hopefully it will help them be stronger in the face of bullying. When kids are bullied, I can not decide for anyone else how to tell you to tell them to handle it. I do believe they have the right to verbally stand up for themselves and tell me or someone else in authority. But every situation is very unique.
I feel like I have NOT done this subject justice at all and my passion has NOT come through...it is such a minefield raising our kids in this war zone called life. You are your child's BEST advocate, their best example, their best and most important source of love and acceptance. There are many resources out there to help them if they get depressed, suicidal or anxious due to bullying. Don't be afraid to reach out. May God richly bless you all and give you ALL the patience and wisdom and courage you need as you seek to raise your precious ones!
Sep 22, 2011
Will I build my house up or will I tear it down?
BLESSINGS!
I was working on the bible study I am currently in and we were reviewing Proverbs 31 as a task in the workbook, and as I was turning to it, I passed a very crucial Proverb for a woman who looks after the ways of her household.
Proverbs 14:1 "The wise woman builds her house, But the foolish tears it down with her own hands." (NSV)
And I was once again convicted of amount of power that I have in my own house. I struggle often with my tongue, as most of us women learned to do when we are angry because we could not fight physically. But if I am wise, I will build each child up daily, if I am wise, I will find the best way to love my husband daily. If not, the Proverb is clear, I am being foolishly tearing down my house.
With our illnesses, there are days that we are so tired, we feel very grumpy, or the pain is overwhelming that day, or the depression is hitting us hard. Or lets say we had a very busy, stressful week and we did not eat right, get enough sleep, and we are in a terrible flare. I have been in each and every one of these situations, but I am learning that only through reliance on God will I be able to build my house on such days.
There are several ways that I am finding will help me in building my house instead of tearing it down on these days. I think the first answer lies in being honest with those precious ones God has bestowed upon us and flat out tell them that you are having a rough day. Then if you do get overwhelmed, (and we are human, it happens to ALL moms), and snap at them, immediately restore and don't let time go by. This allows that child or spouse to know that it is not them that is the issue. Depending upon the age, they may not fully understand your words or what your illness fully means, but they WILL understand your apology and your hug, and most importantly that you absolutely love them.
Secondly, (and I have to remember this constantly and am still learning just HOW to do it!) take care of your body the best you know how at this point in your illness. There is a very happy medium between resting too much and doing too much and I hope to address this in a later blog. It looks different for every person and every situation, but ladies with the amount of responsibility we have, I am learning that part of being wise IS being as healthy as in my given situation.
Third (or as first priority) stay in the Word and keep praying. Take your worries and concerns to Jesus constantly! I find if my mind is consumed with worry about finances, my kids, my health or whatever may be the case that day, it not only makes it difficult to focus on my husband, children and house, it causes my stress to increase (which we all know causes our various illnesses to flare) .Phil. 4:6-7 "Be anxious for nothing, but in everything by prayer and supplication with thanksgiving, let your requests be made known to God. 7 And the peace of God which surpasses all comprehension, shall guard your hearts and your minds in Christ Jesus."(NSV)
It is in my hands to build this house of mine. I find it amazing that God chose the woman to write this Proverb to, don't you? It convicts me to the depths of my heart and I hear the Lord whispering both in last blog and this one...I am to teach kindness and be wise when I speak and He KNEW that I was going to get these crazy diseases, but I am STILL called to do these two things, and then He reminds me that I must be wise and not foolish and BUILD this house I have been blessed with. Then He gives me reminds me of a tool that I just cannot live without.. prayer... a great jumping off spot and ending spot for today.
Be wise, ladies, read the Word, keep praying, take care of your health and be honest with those around you... I am praying for you, my yet unknown readers.
Only by HIS grace,
Diane
2 Corth. 12:9-10
9 And He has said to me "My grace is sufficient for you, for MY power is perfected in weakness." Most gladly, therefore, I will rather boast about my weaknesses, that the power of Christ may dwell in my.
10 Therefore I am well content with weaknesses, with insults, with distresses, with persecutions, with difficulties, and for Christ's sake, for when I am weak, then I am strong
I was working on the bible study I am currently in and we were reviewing Proverbs 31 as a task in the workbook, and as I was turning to it, I passed a very crucial Proverb for a woman who looks after the ways of her household.
Proverbs 14:1 "The wise woman builds her house, But the foolish tears it down with her own hands." (NSV)
And I was once again convicted of amount of power that I have in my own house. I struggle often with my tongue, as most of us women learned to do when we are angry because we could not fight physically. But if I am wise, I will build each child up daily, if I am wise, I will find the best way to love my husband daily. If not, the Proverb is clear, I am being foolishly tearing down my house.
With our illnesses, there are days that we are so tired, we feel very grumpy, or the pain is overwhelming that day, or the depression is hitting us hard. Or lets say we had a very busy, stressful week and we did not eat right, get enough sleep, and we are in a terrible flare. I have been in each and every one of these situations, but I am learning that only through reliance on God will I be able to build my house on such days.
There are several ways that I am finding will help me in building my house instead of tearing it down on these days. I think the first answer lies in being honest with those precious ones God has bestowed upon us and flat out tell them that you are having a rough day. Then if you do get overwhelmed, (and we are human, it happens to ALL moms), and snap at them, immediately restore and don't let time go by. This allows that child or spouse to know that it is not them that is the issue. Depending upon the age, they may not fully understand your words or what your illness fully means, but they WILL understand your apology and your hug, and most importantly that you absolutely love them.
Secondly, (and I have to remember this constantly and am still learning just HOW to do it!) take care of your body the best you know how at this point in your illness. There is a very happy medium between resting too much and doing too much and I hope to address this in a later blog. It looks different for every person and every situation, but ladies with the amount of responsibility we have, I am learning that part of being wise IS being as healthy as in my given situation.
Third (or as first priority) stay in the Word and keep praying. Take your worries and concerns to Jesus constantly! I find if my mind is consumed with worry about finances, my kids, my health or whatever may be the case that day, it not only makes it difficult to focus on my husband, children and house, it causes my stress to increase (which we all know causes our various illnesses to flare) .Phil. 4:6-7 "Be anxious for nothing, but in everything by prayer and supplication with thanksgiving, let your requests be made known to God. 7 And the peace of God which surpasses all comprehension, shall guard your hearts and your minds in Christ Jesus."(NSV)
It is in my hands to build this house of mine. I find it amazing that God chose the woman to write this Proverb to, don't you? It convicts me to the depths of my heart and I hear the Lord whispering both in last blog and this one...I am to teach kindness and be wise when I speak and He KNEW that I was going to get these crazy diseases, but I am STILL called to do these two things, and then He reminds me that I must be wise and not foolish and BUILD this house I have been blessed with. Then He gives me reminds me of a tool that I just cannot live without.. prayer... a great jumping off spot and ending spot for today.
Be wise, ladies, read the Word, keep praying, take care of your health and be honest with those around you... I am praying for you, my yet unknown readers.
Only by HIS grace,
Diane
2 Corth. 12:9-10
9 And He has said to me "My grace is sufficient for you, for MY power is perfected in weakness." Most gladly, therefore, I will rather boast about my weaknesses, that the power of Christ may dwell in my.
10 Therefore I am well content with weaknesses, with insults, with distresses, with persecutions, with difficulties, and for Christ's sake, for when I am weak, then I am strong
Sep 19, 2011
The Road from There to Here
THE PAST
It has taken SO long to finally figure out what I have wanted to do with my life...well...for today that is...tomorrow may be completely different. In fact, I can almost guarantee that the list I make of things to do may possibly go awry. Once upon a time in a long ago time, I prided myself on making my lists for the day, and usually making it through AT LEAST three-fourths of that list and then still wanting to be around people, be social, play outside with the kids because I had energy and strength... I was able to work out 4 to 5 days a week. But you know, I never realized JUST how good I had it...because it is absolutely true that you never know what you have until it is gone. What did I have? I had what many people take for granted every day, energy, health, the ability to focus and overall, if I started a task, I had the strength to finish it. If any one out there is relating even a little bit, I am here to say that this journey we are on...there is hope...for many years I have been frustrated, withdrawn, with many bouts of depression because I was daily trying to survive first of all and then it became focusing on what I had lost. I have a new normal now, as I tend to call it, and I still am in the process of defining it and taking Proverbs 31 and Titus 2 and then doing my absolute best, given my limitations, to let God show me how to live that life that came so much easier in those yesterdays and make them work in my todays.
THE ROAD TO DIAGNOSIS WAS LONG
I was preliminarily diagnosed 5 years ago this coming October but symptoms showed up almost a decade ago now. It started with horrible migraines, daily migraines. I had always had a few migraines here or there, but not like this. Very few people know the whole story....the trips to the ER because I could not stop throwing up, the incredible guilt I carried because my youngest was just 3 at the time and my dear husband was having to carry so much of the load. My children still talk about the fear they experienced because of those ER trips. Two years of this alone, and then Thanksgiving, 2003. Tuesday of that week I started feeling horrible and went downhill fast. I went to the doctor and he diagnosed me with three illnesses at one time. He told me I would be acutely sick for 3 weeks and it would take me another 6 weeks to feel like myself again. Well...that bout of illness was the line of demarcation for me. My life has never been the same. I was constantly sick that Winter/Spring, enough that we thought maybe it was my tonsils? So, out go the tonsils... No change... I was so tired all the time and panic attacks along with depression started. During this time, I got repeated pneumonia, strep throat (before the tonsils came out), bronchitis, sinus infections, pleurisy, neck pain, and I caught everything that came down the pipe. I had no energy. I went from a outgoing, social person to someone who did not want to be around people or my family (outside my husband and kids). Can I get a witness???
THERE REALLY IS SOMETHING WRONG???
I had a wonderful Christian doctors who are good doctors, but it takes an average of 8 to 10 years to get diagnosed with lupus. I do not blame them at all. Had my dentist not caught it and told me to have the ANA test done, I think a regular doctor would have eventually gone there, but I do not know how much longer it would have taken. Yep, it was my dentist. My gums were so inflamed and bled every time I brushed, which was not normal at my age. She asked me if I had an autoimmune disease or got sick a lot, I said I had but she said we would treat them for six months and she if we could get them to settle down. In six months, she asked me if I had ever heard of lupus because by that time I had benign lesions on my gums. I said "lupe what?" At that point she told me to get to my doctor and get tested. Of course, you know the answer.... the day I got tested, it was positive... I say that with my tongue in my cheek because that silly ANA can be positive one time and negative the next.
As with most of you, diagnosis day is full of emotions. Relief that you are NOT a hypochondriat on the one hand and second, there, of course, is the fear of what the diagnosis brings with it depending upon which one it is. By the time I was diagnosed, pain was also a constant companion, so you also feel relieved that you are not "making it up". Then with your family you almost feel like saying "told ya so" or something similar.
My husband is a jewel. He has been carrying our family in so many ways since the migraines started. Remember, by that time it had been 5 years of migraines,pain, illness, depression, anxiety and him having to take over so many jobs that were "mine" to help keep our household running. He felt as if I had abandoned him to some extent. We still working through those years in one way or another. These diseases have had an effect on all my relationships.
BUT YOU DON'T LOOK SICK
How many of you have heard this? Once people hear that you have one of these diseases, this is the first thing most of us hear. Today because of more medications commercials for fibro and RA, most people have heard of the diseases, and yes they have heard OF lupus, but how do you say (or explain) it is a hormonally based inflammatory connective-tissue autoimmune disease. Most common response is: Blink, blink....oh and "how are the kids?" is the next question. Honestly, I am not sure I understand my own diseases sometimes! In fact, I am sure I only understand a small portion of how they truly effect my body. So, it is hard to expect other people to understand them. It is a very isolating thing. In a world where people are running 90 to nothing, who truly has time to sit and listen to what we are going through? Who honestly wants to hear that "oh, did you know that some weeks 5 out of 7 days I wake up feeling like I have the flu?" Then there is your own family...the guilt that goes WITH these diseases is just so difficult. Our memory, of what we were like "before" when we could run 5 miles or whatever it is that you could do that you can't, is not taken away. Not only that, there are my lupus-brain days where I swear my IQ quotient must drop 50 points at least. The easiest thing to do is withdraw, and withdraw I did... for two straight years after diagnosis. I did start seeing a rheumatologist and get on the only types of drugs they used for lupus back then. But I was still quite sick. These diseases effect every system in our body, as you all well know. I am not the same person I was then. But I don't look sick....well, if they could see the 1/2 dollar-size spot on my head that has no hair that I cover up.. BUT WHAT is next!!!.
WHERE DO I GO FROM THERE?
Never before did I desire to be a social isolate. But isolation calls my name these days, but it is not what I am CALLED to do...I have a purpose. But so many days, it was/is so much easier to be an isolate. However, it is unhealthy not to fellowship with other people and fellow believers. We learn through others and draw strength through friendships and fellowship. Recently I joined a bible study that has other people who are facing illnesses or health issues similar to mine. I cannot tell you how exciting it is to be around others who really, really get it! I also pulled away from my first love, Jesus, a few years back. I don't think I was angry... I think it was all I could do (or so I thought) just to make it through each day. The truth is, He IS the way I make it through each day. My new friends, try not to isolate. We need each other in this world, whether it is at a local support group or your church or a very trusted friend. Most of all, remember we need Him as surely as we need the air we breathe, for His grace is sufficient and His power is perfected in our weakness! (paraphrase of NSV) 2 Corth 12:9-10
There is so much more to say, so much more to write, so much more that He is teaching me that I want to share. I will never know who reads, and it is up to Him if this blog reaches anyone. I can only pray that what comes out of my mouth blesses Him, points to Him, and glorifies Him. I want to leave you today with a verse from Proverbs that no matter how awful I am feeling that day, or how tired... this I can always strive to do. I can pray that God gives me ears to hear my children and my husband that he gives me words of wisdom for whatever they need, and most of all that I teaching them to be kind and I am kind.
"She opens her mouth in wisdom, and the teaching (law) of kindness is on her tongue" Prov. 31:26
Only by His Grace,
Diane
It has taken SO long to finally figure out what I have wanted to do with my life...well...for today that is...tomorrow may be completely different. In fact, I can almost guarantee that the list I make of things to do may possibly go awry. Once upon a time in a long ago time, I prided myself on making my lists for the day, and usually making it through AT LEAST three-fourths of that list and then still wanting to be around people, be social, play outside with the kids because I had energy and strength... I was able to work out 4 to 5 days a week. But you know, I never realized JUST how good I had it...because it is absolutely true that you never know what you have until it is gone. What did I have? I had what many people take for granted every day, energy, health, the ability to focus and overall, if I started a task, I had the strength to finish it. If any one out there is relating even a little bit, I am here to say that this journey we are on...there is hope...for many years I have been frustrated, withdrawn, with many bouts of depression because I was daily trying to survive first of all and then it became focusing on what I had lost. I have a new normal now, as I tend to call it, and I still am in the process of defining it and taking Proverbs 31 and Titus 2 and then doing my absolute best, given my limitations, to let God show me how to live that life that came so much easier in those yesterdays and make them work in my todays.
THE ROAD TO DIAGNOSIS WAS LONG
I was preliminarily diagnosed 5 years ago this coming October but symptoms showed up almost a decade ago now. It started with horrible migraines, daily migraines. I had always had a few migraines here or there, but not like this. Very few people know the whole story....the trips to the ER because I could not stop throwing up, the incredible guilt I carried because my youngest was just 3 at the time and my dear husband was having to carry so much of the load. My children still talk about the fear they experienced because of those ER trips. Two years of this alone, and then Thanksgiving, 2003. Tuesday of that week I started feeling horrible and went downhill fast. I went to the doctor and he diagnosed me with three illnesses at one time. He told me I would be acutely sick for 3 weeks and it would take me another 6 weeks to feel like myself again. Well...that bout of illness was the line of demarcation for me. My life has never been the same. I was constantly sick that Winter/Spring, enough that we thought maybe it was my tonsils? So, out go the tonsils... No change... I was so tired all the time and panic attacks along with depression started. During this time, I got repeated pneumonia, strep throat (before the tonsils came out), bronchitis, sinus infections, pleurisy, neck pain, and I caught everything that came down the pipe. I had no energy. I went from a outgoing, social person to someone who did not want to be around people or my family (outside my husband and kids). Can I get a witness???
THERE REALLY IS SOMETHING WRONG???
I had a wonderful Christian doctors who are good doctors, but it takes an average of 8 to 10 years to get diagnosed with lupus. I do not blame them at all. Had my dentist not caught it and told me to have the ANA test done, I think a regular doctor would have eventually gone there, but I do not know how much longer it would have taken. Yep, it was my dentist. My gums were so inflamed and bled every time I brushed, which was not normal at my age. She asked me if I had an autoimmune disease or got sick a lot, I said I had but she said we would treat them for six months and she if we could get them to settle down. In six months, she asked me if I had ever heard of lupus because by that time I had benign lesions on my gums. I said "lupe what?" At that point she told me to get to my doctor and get tested. Of course, you know the answer.... the day I got tested, it was positive... I say that with my tongue in my cheek because that silly ANA can be positive one time and negative the next.
As with most of you, diagnosis day is full of emotions. Relief that you are NOT a hypochondriat on the one hand and second, there, of course, is the fear of what the diagnosis brings with it depending upon which one it is. By the time I was diagnosed, pain was also a constant companion, so you also feel relieved that you are not "making it up". Then with your family you almost feel like saying "told ya so" or something similar.
My husband is a jewel. He has been carrying our family in so many ways since the migraines started. Remember, by that time it had been 5 years of migraines,pain, illness, depression, anxiety and him having to take over so many jobs that were "mine" to help keep our household running. He felt as if I had abandoned him to some extent. We still working through those years in one way or another. These diseases have had an effect on all my relationships.
BUT YOU DON'T LOOK SICK
How many of you have heard this? Once people hear that you have one of these diseases, this is the first thing most of us hear. Today because of more medications commercials for fibro and RA, most people have heard of the diseases, and yes they have heard OF lupus, but how do you say (or explain) it is a hormonally based inflammatory connective-tissue autoimmune disease. Most common response is: Blink, blink....oh and "how are the kids?" is the next question. Honestly, I am not sure I understand my own diseases sometimes! In fact, I am sure I only understand a small portion of how they truly effect my body. So, it is hard to expect other people to understand them. It is a very isolating thing. In a world where people are running 90 to nothing, who truly has time to sit and listen to what we are going through? Who honestly wants to hear that "oh, did you know that some weeks 5 out of 7 days I wake up feeling like I have the flu?" Then there is your own family...the guilt that goes WITH these diseases is just so difficult. Our memory, of what we were like "before" when we could run 5 miles or whatever it is that you could do that you can't, is not taken away. Not only that, there are my lupus-brain days where I swear my IQ quotient must drop 50 points at least. The easiest thing to do is withdraw, and withdraw I did... for two straight years after diagnosis. I did start seeing a rheumatologist and get on the only types of drugs they used for lupus back then. But I was still quite sick. These diseases effect every system in our body, as you all well know. I am not the same person I was then. But I don't look sick....well, if they could see the 1/2 dollar-size spot on my head that has no hair that I cover up.. BUT WHAT is next!!!.
WHERE DO I GO FROM THERE?
Never before did I desire to be a social isolate. But isolation calls my name these days, but it is not what I am CALLED to do...I have a purpose. But so many days, it was/is so much easier to be an isolate. However, it is unhealthy not to fellowship with other people and fellow believers. We learn through others and draw strength through friendships and fellowship. Recently I joined a bible study that has other people who are facing illnesses or health issues similar to mine. I cannot tell you how exciting it is to be around others who really, really get it! I also pulled away from my first love, Jesus, a few years back. I don't think I was angry... I think it was all I could do (or so I thought) just to make it through each day. The truth is, He IS the way I make it through each day. My new friends, try not to isolate. We need each other in this world, whether it is at a local support group or your church or a very trusted friend. Most of all, remember we need Him as surely as we need the air we breathe, for His grace is sufficient and His power is perfected in our weakness! (paraphrase of NSV) 2 Corth 12:9-10
There is so much more to say, so much more to write, so much more that He is teaching me that I want to share. I will never know who reads, and it is up to Him if this blog reaches anyone. I can only pray that what comes out of my mouth blesses Him, points to Him, and glorifies Him. I want to leave you today with a verse from Proverbs that no matter how awful I am feeling that day, or how tired... this I can always strive to do. I can pray that God gives me ears to hear my children and my husband that he gives me words of wisdom for whatever they need, and most of all that I teaching them to be kind and I am kind.
"She opens her mouth in wisdom, and the teaching (law) of kindness is on her tongue" Prov. 31:26
Only by His Grace,
Diane
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