Flaring lupus, and it is so hard being a Mom!

Do you ever wonder if the decisions you make are right as a Mom?  We work SO hard to protect them from themselves to be sure!  And then add in this crazy, insidious disease that steals so much of who I need to be on a daily basis.  I do not feel like I am succeeding at all.  I was watching something tonight about Michael Phelps on 60 minutes and my son was in the room…and they were talking about his Mom and how she had been so wonderful and been such a great single Mom.  Then Michael was talking about how wonderful his mother had been.  I just had to ask my son, how have I done?  Do you feel loved or that I am here for you in spite of this disease?  And he rolled is 16 1/2 year-old eyes and said yes, Mom, I do.  We feel so lucky with him…he is doing well in school and life, so I feel lucky, because I certainly don’t think it is because of me. 

I feel for my children so much.  I am not near the person I want to be.  I went back to work part-time because of financial difficulties not because I was bored at home or anything.  We have had our house on the market since May and have been unable to sell it, so I just really didn’t see a choice.  At that time, I was feeling pretty good overall.  In fact, better than I had felt in years.  But 2 1/2 months later, after a steady decline in energy, mood and finally, health, I am in an almost full-blown lupus flare complete with joint pain and swelling.  I am on my 2nd round of antibiotics and have to go back to work in the morning, and I am still majorly fatigued.  The feeling of “failure” is always one step behind me all the time.  My household does not run like I want and right now, I am so exhausted, I don’t have the energy, physically or emotionally to get it back on track.  My poor husband tries to do everything, but he is so exhausted and I feel like he has no joy in his life and it is also due to this illness. 

I did some research while I was sick about Social Security Disability, and what I have, Systemic Lupus Erythematous (SLE) is considered a disabilty and has its own category.  I am in the process of seeing what I need to do to help my family out.  I know there are those of you out there that may think that it is horrible to apply for government assistance, and being a lifelong conservative, I have had a hard time even researching it, but all I know is ever since I have had this condition, I have had difficulty working, even part-time, even when I tried owning my own business before I knew I was sick. 

I do understand why you would feel like you do, but if I become unable to even work 25 hours a week, then our financial situation will get to a point that something very drastic will have to happen.  Secondly, I might be able to actually fulfill my duties here at home if I only had them to focus on.  I know it is hard for those around me to understand, because people with lupus don’t look sick.  Even if I start this process, it can take up to 2 years to get approved for those who have lupus after getting turned down a time or two. 

Guilt, guilt guilt…not quite sure how to get rid of it.  I watch my husband being so tired and know that it is having to do so much that makes him that way.  I don’t think he knows how much I appreciate him and I wish I could relieve his load.  Since I am doing better overall, hopefully I will bounce back and things will even out again.  That is what I am hoping! 

Well, it is time to go to bed.  I have to go back to work tomorrow and I am nervous about going back.  It seems like forever since I have been there! 

Have a blessed day tomorrow!  Until we chat again!

DMJ

Lupus and expectations

Haven’t figured out if anyone will find this blog of mine…the whole purpose will be to talk about what it is like to try to live this crazy busy life of mine in a successful way with a chronic disease that tends to affect every part of my life…3 years ago, there is NO WAY I could have be working 25 to 30 hours a week anywhere but it certainly takes a toll on my body.  Somedays I come home and all I can do is sleep…and it makes me feel so inadequate…it is like being in a constant battle with something that I have no control over…what I do have control over is how I take care of this condition.

I also feel so often that it is my 3 blessings and my wonderful husband that get the brunt of the effects of lupus…they have lost so much since Thanksgiving 5 years ago now when I first became ill!!!  I have no idea if I am the only lupus Mom who feels guilt.  This guilt being that she somehow falls short in almost every area…that is the rough part!

I have often been accused of being hard on myself….guilty as charged!!!!  I did well in school and have always wanted to be the best wife, the best mother, the best friend and then most importantly, the best Christian witness that I can be….I can assure, it was much easier to do that pre-lupus!!!  Don’t get me wrong, in my mind, I still fell short in every area…like I said, I am SO hard on myself.  This begs the question, can any of us, chronically ill or not EVER live up to our own expectations or the expectations of those around us (or really what we perceive them to be). 

Three years ago, October 2005, lupus was diagnosed after 3 years of depression, anxiety, frequent debilitating migraines, body pain, horrible fatigue, frequent illnesses, and then my DENTIST of all people found my lupus after my doctors missed it for 2 years….the pleurisy, the frequent pneumonia, constant fatigue, constant body pain….both joint and muscle…I don’t blame them, it is a hard disease to diagnose to be sure, I just praise God for my dentist who was insistent with me to get tested for an autoimmune disease!  It was completely in God’s Will… that she became my dentist and then this disease became discovered! 

I think I feel the most for my youngest…my 10 year old boy…I have struggled with this since he was five…so I feel he has had less of “me” than the other two.  But honestly, I believe I have had lupus for a lot longer than its full-blown appearance on my life 5 November’s ago….

Honestly, alot of the above is to help any reader get to know me…I am in the process of learning how to live a VICTORIOUS life with a chronic illness!  The hardest part about doing that is actually defining what that means to me…am I going to set the bar SO high that I expect myself to be exactly what I was in every aspect before this insidious disease invaded my life?  Or do I begin to define a different reality, love myself with a different standard.  I believe that the answer to that question is an unequivocable “yes”.  My expectations of myself can not be what they were pre-lupus, because my capabilities are not what they were, this is neither good nor bad, just different. 

Once those of us who become diagnosed with things such as RA, fibro, lupus, and yes even depression/anxiety and others I failed to mention,  begin to accept that diagnosis, we regain the power in our lives by accepting that there ARE new limitations.  I have had to accept that I have lupus, lupus does not have me and I am NOT lupus, if you catch my drift…BUT in order to regain that power, I believe I have to keep in close contact with my physicians, take care of myself, both by natural and regular methods and (this one I work on DAILY) quit feeling guilty about having a disease that I did not ask for and did not choose. 

Let me just say, I am preaching to myself as I type this.  I have by no means completed this journey!  Take today, for instance, I have been resting ALL day…I am completely wiped out…here is the reason…I am starting to cough….the deep kind that usually turns into bronchitis…but the great thing is that a day of rest now that I am on an immunosuppresant and anti-mylarial tends to be enough…I feel SO blessed!  Three years ago, I would be in bed for AT LEAST 3 days, so I PRAISE GOD every day for revealing what was wrong with me!  Now…this has become long, to I will end for now…I pray to God there is someone out there that finds this blog!  I hope to make new friends who understand what I am going through…people with struggles each and every day…and I hope to also be a blessing…maybe even one thing I share someone out there will relate to!  God bless you all…DMJ

The first of many Ramblings…

Wow…it takes so much just to set up a blog page!!! I am trying just to learn all the jargon!  This page is a work in progress just like its author!  I have long wanted to share my experiences of the last 5 years with others in the hopes of helping someone, anyone out there…and also to share this continuing journey of my day-to-day struggles of living with a chronic illness and trying to be the absolute best wife, mother, employee that I can be, which has been no easy task, I assure you!  The journey to even get to a diagnosis of lupus was hard and took 3 years after onset of symptoms..enough time for a lot of problems to develop on the home front, I assure you!  I can’t wait for this online relationship to get started!  Maybe somewhere out there my ramblings about this insidious disease that slammed me 5 years ago can help others…well..I am going to work more on this website and on the “history of” page…if you read this, let me know you are out there!  DMJ

Relationships, pain management and financial stress stink!!!

Here it is 3:35 in the morning and I can’t sleep…Stress has been off the scale of late!   Even though we finally sold our house and got rid of the larger house and 2nd mortgage, we were forced to buy the house of the people who had a contingency on ours…NOT a house of our choice and NOT in the neighborhood we originally chose…that company declared bankrupcy and took our earnest money with them…depression has set in like a horrid cloud unlike what I have experienced in years and my panic attacks are back.  This is the time my faith should be kicking into high gear and all I want to do each morning is crawl back under the covers and stay there hoping that this life as it is today would just go away.  We are sitting with a ton of debt to pay off and the creditors are complete jerks to work with as anyone you talk to “has only one option” unless you go with their credit consolidators which we will NOT do…anything they can do, we can do as well.  We do sit here somewhat disllusioned by our presidents promises to be sure to help those in our situation…

Then there is lupus…the stress if awful for my condition….it increases the depression, the panic attacks and the pain…I feel so guilty about dealing with my pain through pain management because the church in general acts as if you choose to deal with your pain, then you are automatically an addict…and all I choose to do on a daily basis is turn that over to my Jesus and ask for wisdom.  I wonder why our churches believe it can only be one way…addicted or not on pain medication…my personal position is that if you follow your doctor’s protocol and stay close to him/her, believe that the chance for addiction is always there and use the medication appropriately and when necessary, then it has its place.  Yet I am continually reluctant to share its use with people in the church because then they will be suspect regardless of my reassurances that I will remain in counseling and under contract with my doctor as long as I am on medication…Believe me, I would NEVER take it if the pain of lupus was not above a 6 to 7 out of 10 or higher on a daily basis without it! 

The hardest thing right now?  The effect that the years before diagnosis had on my relationships and what this stupid disease has done to my brain!  I feel slow and sluggish and so much less of who I used to be.  I feel so often that there is no one I can really talk to about it for it is “complaining”.  I am tired of having it, tired of what it has taken from me, tired of fighting.  I feel so darn alone tonight.  

I pray right now that Jesus will give me the strength and the courage and hope to change my view point and remind me that it is going to be okay and that He is with me.  Isn’t that what He constantly tells us in His Word?  He will never, never, never, never forsake us?  I know this truly in my heart.  Tonight, He will have to be the one to carry me and restore my faith and hope.  This solider is tired.  I pray His blessings on any of you reading this as well…if you need hope, strength and courage, that you are given it as well…that you, along with me that we can put our trust in Jesus and He will see us through these difficult days.  Blessings.  DJ

Dealing with a new move, lupus fatigue with faith and determination!

 Hello my fellow travelers!!! Do you ever wonder what God is doing? You are 100% normal, I am convinced, if it is on a daily or every other day, or sometimes minute basis! The way to deal with it? T-R-U-S-T!

This is one fact I have come to be sure of in my long relationship with Him…sometimes the only thing that I can be absolutely 100% sure of is that I can trust that He has my absolute best at heart!

Now, fatigue…oh, my goodness! It, at present, is at an all-time high. However, I will admit NOT as bad as pre-diagnois and pre-medicine! Okay, let me back up and update you on the cause/effect that threw me into a lupus flare which is the sure-fire way to end up with to-the-bone, dead-dog tired, sleep won’t cure it fatigue…

In my last post, I blogged about learning to believe in myself again, that I could hold down a job on my own, well, I was laid off, then after that our house didn’t sell, and didn’t sell and didn’t sell…but I continued to be persistent with God. I also understand that we can be so honest with Him about our frustration and fears and anger that one day I found myself pounding the steering wheel and just letting Him know it!!! Lost job, house not selling in spite of our persistent prayers.

Prayer and Jesus….what a combo! We are told to pray without ceasing, to ask for wisdom and I had been. But by a friend, I was reminded that God is not a slot machine where we just ask and He delivers, because He has the perfect plan in mind. He does always answer, however….ALWAYS…either yes, no, or later. He is amazing.

His ways are not our ways to be sure and how did He finally answer since I am sitting in a new house to us? Our house sold, but not like you would think. We ended up buying the house of the people who had a contigency contract on ours. We have lost a bedroom and 900 sq ft, so our sons (who are 6 years apart) will share a room. It has been frantic trying to donate, sell and squeeze stuff into this smaller space and we are still now through. I was so incredibly stressed in the 3 weeks before we moved, I had a major flare in my lupus which I have not recovered from. I am completely spent which is opposite what I need to be because I have a house and garage that needs organizing.

Where do I go from here, then, since this crazy disease has reared its ugly head at inopportune time? How do I become victorious? Well, I get more rest than normal, I give myself a break for a little bit, and I do a little bit each day.

I can’t complete this entry today without saying the most amazing thing about this entire experience. I have been so pleasently surprised. Believe it or not, I feel like a weight has been lifted off our shoulders. Now I know we have debt to pay back still and there will be challenges living here, but the relief of being out from under the other two mortgages is just wonderful! This absolutely may turn out to be the best experience of our married life and our family’s life to date! Sometiems out of adversity comes unexpected blessing and character!

What I do know is to live victorously with the level of fatigue is to do the best I can for myself…plenty of rest, eat right and don’t stress about being in a flare! Stres exacerbates them in the first place!

You know, I have no idea who reads this or if God will ever use it to encourage anyone. I can only hope so. If you are out there wondering if God love you or if He has your best at heart, I can assure you He absolutely does! Of all the hard things we have been through, of this I know. Jesus is the Prince of Peace and the God of all comfort if I will choose to rest in His arms and to hold me in the hard times.

God bless and until we meet again!

DJ

Trying to keep loving life and trusting God in the midst of a lot stress!

When I last posted, I was reminded that even with all the things we are dealing with, there is always someone who has it worse than you do.  I think that just may be the key today when it seems the world is falling apart around us.  I can’t remember a time in my life that there seems to be stress everywhere we look…the nation’s finances, our personal finances, the world situation (wars and rumors of wars)…and then I hear about at least  4 or 5 people that I personally know that have been laid off in the last few weeks.  My sis-n-law works at a large corporation in HR and has had the duty of laying people off…can you imagine how awful that must feel?  I can’t imagine, and I don’t know if I could do it myself.  Everyone person represents a family.  We are all feeling the stress….

Just when you think everything is going wrong and nothing is going right, God does what God has always done for those who love Him!!! Or maybe He is constantly doing things for us and we just don’t recognize them as Him moving in our lives and creating blessings and opportunities and challenges to shape us and mold us to be more Christ-like?  

For example, we have been unable to sale our house for almost a year when we desperately need to and in order to “keep our credit good to buy another house” any deficit has gone onto credit cards.   I have lost so many nights of sleep over this I can’t tell you.  I have questioned God so many times as to why He has not let it sale.   But if I stop to tell you how many things I have learned about Him in this last year and how much I have grown, I am not sure I would change it.  Am I still losing sleep?  Yes.  Am I still feeling stressed YESSSSS!  But here are the blessings….I am praying again, Greg and I are working together more on things, a relationship with a member of my extended family has grown closer again, the belief that I can hold a job down and the belief in myself regarding that has increased, I have realized just how much our family thinks about us, hurts with us, rejoices with us when things go right, and are rooting for our house to sell as much as we want it to sell.  These things, I would not change for the world! 

I also have had to take a job.  It has not stopped the bleeding as a B.A. in Psych and being a stay-at-home Mom all these years just does not qualify you to do much.  The experience has caused me to really begin to believe in myself a little more and as the first job was not a good fit, it gave me the gumption to apply at a company I had known about and desired to work at for a lot of years…I filled out the app, turned it in and got called that day for an interview the next day and was hired for an entry level job from the interview…the owners are wonderful Christian people.  Is there pressure and stress in a new job?  Yes, of course as I have to increase my speed…and I am very nervous I won’t live up to expectations (ah….there is that word again that I have wriiten about previously!)  All I know is I will work as hard as I can and pray that God gives me what I need to succeed at this job and do well. 

I will admit that I am scared about our financial situation.  We have to do something.  If we do not sell the house soon, we will have to look at other options which I am currently researching.  But the Word says that God does not give us a spirit of fear, but of power, love and a sound mind…so, the fear is not from Him…that I know.  Therefore, G. and I are beginning to attack this from an intellectual standpoint by researching the options.  Our next step will be to talk with experts in the field.  Another definition of 1Tim 1:7 from the amplified Bible is

⁷For God did not give us a spirit of timidity (of cowardice, of craven and cringing and fawning fear), but [He has given us a spirit] of power and of love and of calm and well-balanced mind and discipline and self-control.

So, I believe we are being called to remain calm but also to begin to take even more steps from a financial standpoint that will involve a tremendous amount of discipline and sacrifice.  One of my father’s and grandfather’s favorite sayings was “God helps those who help themselves” and I do believe that He can give us gifts out of the blue, but I also believe that we are called to do our part, as much as we can!  Above, this amplified just so spoke to me….calm, well-balanced mind as well as disciplined and I am to exhibit self-control with my mind.  As I contemplated this, I realize how much time I have spent being so worried about what tomorrow will bring for us instead of disciplining my mind to focus on the peace that Christ brings.   I had been allowing anxiety instead of calm and had not been exhibiting all the discipline I needed or need to continue to exhibit!!!  No wonder fear had taken route!  God is so wonderful!  In one single verse lies the ability to love this life more even in the midst of the incredible amount of stress my family is facing right now.  I have no idea what will happen tomorrow, but what I do not for sure is that My God is with me, He is our Jehovah-jireh (provider) and He is the Prince of Peace and the God of all comfort! 

God bless you all and keep loving life!

Diane

Finding the blessings and the lessons–make sure you look!

Hope you are having a blessed day! I am trying to get settled down to sleep…it is difficult for me to do some nights with so much weighing on my mind. However, I must say this weekend at church, we met the most amazing couple! And also the sermon just hit the spot in so many ways. I know my life is not what I want it to be right now, but if you look, you do not have to look far to find someone who is facing something more difficult or harder! This couple…they grew up in India, she became a “born again” Christian as she defined it in the early 1990s and he was a Hindu. They met and married while this was the case. It was very difficult for many years for her as his was a Hindu family and hers was Christian. She can not tell you exactly why she married an unbeliever because she knew that they would be “unequally yoked” and it would cause difficulties, but she knew she was supposed to. Well, her husband, felt the Lord’s pulling for many years and definitely was a seeker getting into Eastern mysticism and New Age. They dealt with difficulties with her going through a bout with cancer in her young life as well as being of different faiths, and yet still God was calling the husband. Eventually, he surrender his life after their daughter fell ill with something that to this day is now known (the cause). Their beautiful daughter, who is still beautiful, is wheel chair bound and no longer able to take care of herself or speak.

Me and G had never met this couple as they had been going on Sunday mornings and us on Saturday nights. But my husband and this man have a mutual friend and so G. went up and introduced himself and consequently I followed. I have to tell you, it was the most blessed 2 hours I have spent in a very long time. Their faith and passion for Christ is so infectious and comforting in spite of all they had been they had been through. I found myself sharing one of the most hurtful things that had happened to me in the last 5 years that had affected my church attendance and this sweet, precious woman took my hand and just held it for a long time as we continued to talk and while I shared, she just prayed under her breath for me! Her husband has only been a believer since 2005, but I must say, his faith, while still growing in so many ways (well, as is most of ours) was so much far beyond mine right now. You see, they had this pervasive belief that what happens God can use for His glory and for our good. Of course I know this, yes? I mean, those of us who have grown up in church, have had the benefit of having multiple bibles in our homes, can freely go to church and talk about our Savior (and even blog about HIM!) freely and without fear, we should have such faith, shouldn’t we?!

I reread my last post and go “yuck!” I know it to be true that what I am experiencing with lupus and this job and our finances, etc… HE can work for good! I know their have been blessings! Like meeting this couple. They have prayer times and get togethers with our other mutual friends, which would be absolutely wonderful!

I think talking to them was the reason I was able to get up and go to work today. Was anything resolved there? Not exactly…as long as I am there, there will be conflicts. I also know this. There are no perfect work places just like there are no perfect churches. Have my problems changed? No, but hopefully I can change my attitude!

The lesson for me? Remember not to get so caught up on my own problems that I forget there are others out there with much worse things to deal with. Secondly, look for the blessings that God heaps on us. They are so little sometimes, we might miss them, but they are there! But often they come in someone unexpectedly taking your hand and praying as you share the hard things. But the bigger blessings come in being the one to listen and to pray, which I can’t wait to be able to do!

Until next time,

DJ

A little good news, a little bad…still trying to live victoriously!!!

I decided to bite the bullet of pride and begin the process of seeing if I can qualify for disabilty. We have been unsuccessful in selling our house in 9 months, and working is about to kill me. I am tired all the time, I am letting my whole family down. I was sick over the entire Christmas break…well, I really never got over my first pneumonia infection completely I guess and I have developed bronchitis again along with pleurisy. My lungs and back are hurting so bad tonight, it is difficult to settle down and go to sleep.

Anyway, after doing a little research on the SS website, I decided to call and make an appointment or look into if I had accumulated enough points to qualify for disability. Well, the lady on the phone was, lets just say, totally monotone and very uncaring. She looked up my “points” and told me I ran out of the ability to withdraw disability in 1998…now explain this to me? How can my disability points expire? I mean I paid them in didn’t I? Now I am penalized for staying home or being self-employed since? That is crazy! So, we proceeded to find about about SSI which is based on income…her first question was do you have any assets worth such-and-such that can be sold for cash…I said what like IRAs, and she just repeated the question, and I said, well we have cars and our IRAs are worth more than that…by this point, I was becoming increasingly upset by not only her attitude with me, but by what she was now asking me…I asked her, so you are telling me that if I have anything worth more than $3000, then I do not qualify, so I have to sell everything I own in order to get help when I am having trouble holding down a job due to a chronic disease that is classified by the SSA as a disability and we are not making it each month, and have debt we can’t pay? She said you don’t qualify…I guess this is why people get lawyers!

I was then later told by a friend familiar with our government’s system and was told that that was their job. They attempted to discourage people from applying and were told not to be supportive. I thought “well, that is our tax dollars well spent for the people who really need it!” Now I have to tell you…it is VERY difficult to even THINK about asking the government for anything!!!My whole family is against it (or would be if they knew) and I was raised to never think about relying on the government for anything like that (what about unemployment?) But I just don’t get my “expired” disability that at one time I had worked enough to earn it and now I don’t have it…

I am not feeling very victorious today, I can assure you! Next step, actually apply and officially get turned down so I can get legal advice!!!!

I have other issues to be sure this week…I feel like such a grump!!! But I am learning so much about how you can and cannot be treated at work. I have been letting one person treat me horribly because this person is over me, but I am learning that what this coworker is saying to me and how this person is talking is against the law! My husband has encouraged me to keep a journal. I am going to do this so if any question ever comes against me about anything, I have a record. The awful part of it is that I have only tried to be nice to this coworker. I would give more details, but I have to be careful as this is a public forum. Lets just say that in the last two weeks, this person has attempted to say that I do bad work to my supervisor, and thank God because it is backfiring on this person.

The best we can do in this life is continue to be who we are inside when we are faced with such things, but i have got to tell you, I have never met anyone who appears to want to be mean just to be mean. I cannot fathom doing what this person has done in an effort to make me look bad.

Here is the really good thing…I am learning that I really do have a supervisor who is on my side! Working is so very hard anyway. Just getting up the energy to get out the door every day is a miracle and takes everything I have right now. I wanted to go up on one of my lupus drugs, but my liver enzymes are elevated right now, so we can’t go up on it right now…

About lupus, I found out two weeks ago that I also have the skin form of lupus which is called discoid lupus. I had a lupus lesion on my head which has been there for about 3 years, but in the last 9 months or so, it has tripled in size and I seemed to lose most of my hair in this spot, so I had a bald spot right on top of my head. Most of the time, I can cover it up and stuff, but it still made me feel self conscious. The rheumy sent me to a dermatologist right before Christmas. He went ahead and biopsied it to make sure there was “no cancer hiding in there” an called me back. Bad news, you have discoid lupus, good news, I can treat you with corteosteroid shots and hopefully get your hair to grow back in…that was fantastic news!!! I really thought I would have to live with this spot this size or that it would get bigger.

Lupus and my life…I am struggling with a habit…a TV habit…I have felt bad for so long and feel bad still for a lot of the time that I have developed favorite shows, and then there is then other side effect that TV has on all of us, it is mind-numbing. Did you know that there is less activity in your brain when you watch TV then when you are sleeping? Anyway, I have one in our bedroom and I asked my husband recently how I could improve our relationship…always good to ask, and he said to get the TV out of our room. Well, that freaked me! I watch it when I am recuperating from a long, hard day, or when I am using our bedroom as a refuge when the kids have friends over or when they are playing their video games loudly…I have always had sensitve ears…I read somewher that people who have migraines tend to be more auditorial sensitive then othere people. After thinking about it a few days, I asked if we could move the recorder into our bedroom so I could record the shows I like as a good compromise…The thing about a chronic illness that involves fatigue and getting sick is that it so often robs you of th energy to handle just regular life. By nighttime, I don’t have much left. Even when I do sleep, I am tired…all the time…and my joy…the joy I used to have, I don’t understand why I can’t seem to find it in the little things any more. Well, I guess that is not really true. I just don’t find it every day in every moment. I feel I am failing them all and I am losing and lupus is winning. I just so need to somehow find my way back a little bit…

He says he thinks we will be able to talk more and spend moe time as a family if the TV wasn’t in here…I have to consider what he is saying, and I thought I came up with a good solution. Any show I really liked, I would recordand watch on days off or after the kids go to bed. I am coming to realize that I do rely on it to escape into sometimes…to escape how very disappointed I am in my life and having lupus and all that it has robbed from me. You know though, that makes me sound like I feel like a victim and I don’t want to be a victim!!!!! I don’t want lupus to win!!!!

I know you are sitting there reading this going “well, then get off your butt and get busy!” I wish I could explain it to you…it takes so much energy just to do the little things, like take a shower, get dressed, etc…but anyone who has read my blog knows this alrady…but in my defense and the defense of those of us with lupus or RA or fibromyalgia…it is like waking up a mild flu (and some days the bad flu) every day. Now think how hard it is to concentrate, take care of your kids, think about going to Wally World and shopping for and hour, and then add 25 hours a week to that when you are still sick…but you don’t ever get well. Some days are better than others, but that describes lupus. it varies from person to person…for me, I also get 2 to 3 migraines that are incapcitating each month. Lupus also messes with a person’s serotonin levels so depression and anxiety are a frequent companion…

Well….this definitely sounds like complaining and it is very late. I want my old life back so very much! It had laughter and activity and less debt to be sure. it just seemed easier. To get victorious in this, I will have to come to a compromise with my husband with the TV…I know we can…we just have to keep talking and never stop! That is the way out….talk to my loved ones and let them know what is going on and let real people love me not a square box!

Until next time…..DJ