Lupus and the People We Love


I feel as if I should apologize for my recent blogs.  I am new at this.  I got off course a little.  I wanted this blog to help me share a daily journal with all my friends out there battling Lupus.  I do not get to say all the things I want to say to  the people that had to put up with me growing up.:) I love my family back east and it is very important for them to know that.  I want to share with you that I was diagnosted with strep throat recently.  Wow, it is kicking my bum bad.  So, now the rash has reared its ugly head.  I can hardly talk and I am so tired so we have had chicken nuggets all week.  I am using my heating pad and watching all my “faith and christianity” movies on netflix. And, lounging in my pajamas, doctors orders.  Anyway, I have learned this is the best place to complain because my husband looks like a deer in aheadlight evertime we talk about it.  Maybe its not complaining however I know everyone of you know has had each symptom and then some.  I have read and tried so many of your helpful tips.  Many of you are very sensitive and brave to share your treatment and current therapy.  Many of our symptoms are the same but everyone handles life and the process of going through this chronic illness differently.  Sometimes when you are having a serious symptom, healthcare professionals do not get inside to the emotional part of your flare.  I know these symptoms pass but the emotional healing does not go away so easy.  We are left to handle  that part  on our own.  I truly believe that if you don’t have Lupus you can not possible feel what I am going through. Not to be synical or anything. This brings the task of trying to politely listen and accept what they are saying to me.  I look back from a distance and see the selfishness that I am displaying.  I need those people in my life just like I need all of my fellow luppies.  I have to learn to accept help and be firm about what kind of help they can offer me.  Assistance is the thing that connects us together.  Please know I want to be a part of your assistance. I think we need some Lupus chapters down here in the sticks.  If you feel alone please think of me and know that I will have you in my heart.  Your fellow Luppie:)

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My Mother and her Magic


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Oh the joys of those who do not follow the advice of the wicked or stand with sinners or join with scoffers. Psalms 1:1…It is hard t to judge from the outside but once we see the inside it is usually so much more ugly.. We have to learn unconditional love because it does not come naturally. At least for some of us. For any reason when a child loses comfort or security as they grow up life as they know it changes. I always put off talking to my mom because I felt like she would not understand. I felt she did not understand my situation or what I was going through. What a typical teenage response! She is a wonderful person,mom 001
I adore her smile. The smile you see has never left her. It has been a permanent fixture on her face as long as I can remember. I miss that now that I have moved west. My boys do not get to see much of her but I know she misses them and her time with them. She is a quiet but, a
godly person. I felt growing up that my sisters had many of the same personality traits as her and they were able to spend time with her doing things they all enjoyed. I liked to have my own space. I did not know why I was feeling so distant from them especially with four sisters who each are unique and wonderful themselves. We had a very comfortable home even though we were not financially set. My mom always wanted to help me but I think she settled on just loving me. That made me pull away more because it annoyed me. I did not know what was wrong so how could anyone else. Maybe my comfort level as a child was snatched from me at the wrong age? If it was, we don’t know and can certainly not change that fact now. I feel like we don’t connect on some levels but I believe that might be because we are so alike in those certain trials we try to go through within ourselves. She had no meaningful support from my father so she was having problems handling her own situations so it was impossible for her to guide me through mine. Those areas that were so difficult, she helped me handle with a true comforting spirit. She taught me to handle some of the awkward situations growing up and how to work through those things. I have been distant, but not angry. She has given me all of her wonderful qualities. She is hard-working, caring and she LOVES her family. She is a breast cancer survivor and has had many health issues lately but she kept going through adversity and never complained. She is a true inspiration to me as I am struggling with Lupus. I am learning everyday. I have always carried bitterness and resentment and I have given the people around me mixed signals. I am sorry for this and I expect to again make mistakes as I walk through life. Please feel free to share a prominent person in your life. I would love to hear about your comforting places and where you go back to when the bad times hit. God has brought me the peace that fills the void in my heart no matter what the size. I know this is hard to hear because We see a lot of articles like this each day. Each person will find their own intimacy with God. Cherishing these times are hard when you just want to be angry. But, I think many of us don’t know the complete source of our pain. We may have a good idea but we in turn keep piling up the hurt, judgement and adversities that take over the piece of our heart that God keeps for himself. Serving others is the most rewarding thing I have every been taught. I am glad God has chosen me for his kingdom even as wayward as I had become. I know my mom understands this about me and I am again comforted by her courageous faith and unwaivering respect she has for others.

Lupus-The Early Years


I feel I need to give you a little background into my life before Lupus tried to monopolize things around here,  I was an energetic child.  I studied dance, I ran cross-country, I played softball . But my real passion was swimming.  I swam competitively from the age of 5.  I also play the cello which definitely needs some fine tuning since it has been a few years since I have picked up a bow.  I was a typical teenager.   I cheered and was what others might see as an all-american girl.  But,really I was a shy, non-confident  girl with judgement all around me. I grew up knowing God and accepting Jesus as my saviour, I know to submit to him but instead he scared me   I learned this distant fear from my relationship with my own father  So, basically I drifted around after high school not being able to settle on a career choice and very unsure, of my place in this world. I was a glorified drifter with a home, friends, and family, But, I could not pull myself out from under a very heavy hand pushing down on me harder and harder.  I began to go through challenges and trials. I was mad. I was unsure and hopeless. My decisions took me through a very solace and lonely place. I put a lot of strain on my body and the damage started to unleash the wolf. I lived that way for a while, with God using his Spirit, humility, grace, comfort and committment during this time to strengthen me, He was shaping me and transforming me to be a comforting presence in someone else’s life. He designed these hardships for me personally and he knew the trials I could endure. It is hard to be submissive and trust God through hardships. I always want to shout Why me? Why Lupus? Am I being punished? The things I did to my body might be causing me more pain than I needed to go through but Lupus would have still happened. God’s trials don’t have to devastate you. If you can face them with triumph and not devastation hopefully you will begin to see how to help others whose eyes are not as open. As you know, Lupus keeps you guessing. The pain seems to not have any rhyme or reason. I can really use God’s purpose and purity at this part of my life especially since the newest challenge at home now is returning to school! With some special children this is an extremely unique time filled with STRESS.:)….and more stress. Love in Christ.

Letting Go


My children have been home for Christmas holiday. With them returning to school soon, I started to talk with them about the things they remember best about Christmas. Surprisingly, what time I got up in the morning became the number one topic they both had become concerned with. Not the visits from relatives and the magnitude of presents or not even the original “no homework” answer came flying from their mouths. It was that I was waking wake up later and that was putting a damper on their little active lives. I was beginning to wonder about my time off from work and what the diagnosis of Lupus was starting to feel like to them. I knew it was going to have an impact on some things but I did not realize the worry or guilt it was going to bring to me. You know with the typical work schedule, getting up in the morning used to be somewhat of a habit. The typical body time clock that has you on some sort of routine ritual in the morning. This little inconsistency was making my mommy magic less glamorous. Maybe they were scared. Maybe they felt they had less control over the disease. Or, maybe they felt empowered because of my passiveness. In any way, we talked a little more and they returned to whatever they were doing before. Looking at this now I see that I have to let go of my guilt. The situations that are pulling me down need to be set free. I usually bottle things up and close down when imperfections come to the surface. But, I now have two little boys who have begun to let go of their need for attachment. They have begun to find their independence and see their own imperfections. I see that Letting go means different things to different people. So, it makes me smile a little because they still need me more than they think. (but, don’t tell them…)

Lets all Stand Together


Today I am writing to give you a glimpse into my pain with Lupus. It is not always a physical rehabilitation. Tonight, it was an emotional one. Lupus as many of you know does not always mirror on the outside the emotional havoc going on inside. My family loves me. I know this. They want to understand and are willing to listen as I explain my ailments to them. The problem is that nobody REALLY does know. I have lived my life as the middle child always wanting and willing to please. I have never felt quite good enough or emotionally strong enough to tell others the place I felt the safest. I cannot remember even what makes me the happiest. I remember as a child my parents tried to understand. Of course, the doctors kept wanted me to come back each week as they tried to unravel something they could never fully understand either. I say this because many people are hurting and its hard to know how to help. Please be patient and never give up hope. The thing that hurts people the most is being misunderstood or having someone give up on them. No advice just a quiet hand sometimes. God Bless You.

Change


20046_1310245925808_1951866_n003    Please tell me why my child acts this way?  It seems I am constantly playing a well-meaning but, ineffective role in my children’s obnoxious behavior.  Getting drawn into the absurdity that my children see as negotiation is exhausting.  Is it possible to have perfect children?  I have heard all the labels and catagories the professionals want to paste on my children.   I have learned over the last few days that no one in my house is  acting responsible or legalistical.   We are confusing wants and needs.  Often in my house we are opposing the other parent and teaching strategic recognition.  Now on the other side of the family business  my children are wonderful angels made only for me by God.  He knew I would be the parents of these challenging creatures.  So, why does their inappropriate, irresponsible, lazy behavior put such a stigma on me?  I guess because it is my legacy that they are learning.  I want my children to realize that every moment is a gift from God.  As their parents, we have an awesome influence on the way they live their life.  Every parent wants their children to cherish the best values but parents make mistakes right?  As I take my children by the hand or hug their shoulders I know my family is whole and healthy in the Word of God.   Then, it starts all over again.  Is it so wrong to desire peace and quiet, intimacy and obedient children? I am glad that these moments are precious and if they only happen once….well thats probably a good thing.

Attack from Arrogance


mom 001Everyday I would wake early and race through my workday always following the same routine. In time I slowly awoke a little later. I became very comfortable and settled. I arrogantly built a house and social life around my successful career. As time went on, I continued along the same routine schedule. My comfortable loving house had became cold. I was pulling back from my husband and children and walking through life not paying attention to the changes happening around me. I got sick. I decided to suffer silently. I wanted it to go away. Changes would not be productive so I blocked everything out. It was not fair! I was not prepared for this. How could this happen to me? So, everyday I continued to do what I had always done. I found it harder to sleep, had less energy and I became irritable. I could blame Lupus but I knew anger was controlling me at this point. I had made many idols in my life. The routine that had excited me had no place for me now. I cannot do what I had loved so energetically and desired so much. Temptation becomes a sin when we dwell on thought. The temptation that comes into my life is no different from what others experience. As a christian I should not be a stumbling block to others. But, My family became really confused and frightened. It is very intense and heartbreaking. I know they feel unloved or they feel that I am angry with them. My frustrations make it hard to be consistent with my words. But, I am learning. I love my family very much. So, I need to look everyday for an opportunity for joy and a little gratification for what I have.