My son painted the 2 pieces in this picture for me for various holidays. He is also wearing the Lupus bracelet on Lupus Awareness Day 300 miles away from me :( The other pic is me and my daughter sporting our purple!!!

Depression and Lupus

Depression is a terrible thing and depression on top of Lupus or any other chronic illness is worse, in my opinion. It sneaks up on you and robs you of so much joy and happiness. It puts you in dark places you don't want to talk about. It makes you withdraw from people, social events that you once loved. People look at me, ask how I am doing, I smile and say "ok", what else do I say? Do I dare tell them the truth? Could they handle it? Probably not. Then the emotional part sets in and you cry at the drop of a hat, my family can talk to me in a certain way and I will start to cry. This is something new that just started happening, I am normally not an emotional person. I've been driving down the road crying my eyes out questioning my existence. What do I really do for my family, for my husband, for my son, for my daughter? I am not smart enough to help with homework. Half the time I don't feel like cooking, cleaning or performing my wifely duties. I don't get to visit my son as often as I would like to. If I weren't sick I could work, we would have more money, we could take more vacations. There are days when I cant get out of bed, not from the depression but from the disease itself, the pain, the fatigue...... I HATE lupus!! It's an awful feeling but we need to learn there is no shame in asking for help from our doctors. Depression is real, it's a chemical imbalance in our brain caused by the disease or not, it's real and at some point we need help with it. I have put it off as long as possible, not because of the "label" but because I don't want to take another pill and I honestly thought I could handle it on my own and without medication. Well, it became obvious I need the medication, may be temporary, who knows but right now I need it and I wish it would hurry up and start working.

I hope if you are struggling with depression, feeling sad, crying a lot or like me questioning why you are here you will get some help, talk to your doctor, don't wait like I did. You have nothing to be ashamed of, it's not your fault, it's not a sign of weakness and it's not something you can control so please get help.

Dealing with people......

Do you ever get tired of dealing with people? You either have people ignoring you and your illness or you have people that are oblivious and say stupid things like, "well you look good", I just want to kick them in the teeth. Really what do you say to something like that? I am from the South, so in my sweet southern voice I usually say something like "well I may look ok on the outside (which I probably don't because I don't have any make up on and my hair is not fixed), if only you could feel what I feel like on the inside, I'm in a lot of pain most of the time. If only they would walk a day in our shoes, how that would change things. Wow, I can think of many people I would choose to walk in my shoes, that really is something that makes you say hmmmmmmmmmm.......... People are ignorant, some people really don't realize what they are saying but there are those that do and it's those people that infuriate me to no end! Compassion, tenderness and kindness towards sick people, these are things some people do not have. People go on with their lives and they forget about the friend that used to be on the church pew, used to go shopping with them, used to go out to eat with them... they forget and when you do see them they say they have been thinking about you and I am sure they have but is that enough? Do we need more? YES!! We need friends that will come drag our butts out of the house for lunch or shopping or a cup of coffee. We need to be pushed, nudged, shoved, etc. because sometimes its all we can do to get up and take a shower. We need our friends as much as we need a good doctor. Just because we can't keep up like we use to doesn't mean write us off completely, we're just at a slower pace now ;) We could also use your help around our house, most of us can't keep house like we once could and it's very frustrating for us, so any help is appreciated! I guess what it really boils down to is this, we as the patient need to be honest about our health condition and ask for help! If we don't talk about it or ask for help then people won't know and won't know how to help.

Medication

Medication...... It's so very important, it's something we must take every single day of our life in order to get out of bed and function. I realize for some of us it's not that severe but it can turn into that in a split second. I get so very upset when I hear people have just stopped taking their meds against their doctors instructions, just because they wanted to, they didn't want to deal with it any more, they want to feel normal again. Well friend, let me tell you if you don't get back on those meds quickly you will feel far from normal. Our doctos put us on these medications for a reason, yes there are side effects but the benefits outweigh those side effecs. We must look at the big picture and the picture right now is the "quality of life" we will have not the "quantity". Yes, some of our meds have some nasty side effects which ,make us take more meds, that's what I'm dealing with right now and my meds are making me incredibly sick and I'm having more bad days than good but I know there has to be good days around the corner. Just hang in there, listen to your body but most importantly listen to your doctor and if you don't trust them enough to listen to them or follow their treatment plan, it's time to find a new doctor! The disease we deal with is relentless and needs these meds to slow down the progression, but if we don't slow it down by not taking our meds, we are giving it a free pass to wreck havoc on our bodies! Let's listen to our bodies & take care of ourselves the best we can! Don't fight your doctor, take your meds. When you have side effects don't stop taking the meds, call your doctor immediately and let them make the decision on what to do next.

Blessed

I got pregnant and married at a very young age, to my high school sweetheart.  By the time I was 24 I had my two kids, was very happy, never regretted a thing and was living/loving life. You know the old saying "everything happens for a reason"? Well now I know.  By the time I was 31 (2002) I got sick literally over night and never got better, a few years later I was told I had lupus and started taking some powerful medications, after that I knew I would not be able have any more children, not only would I have to stop taking some of the medication up to 6 months prior to getting pregnant which would make me flare I would also have to stop all of my other medication used to treat lupus which would also throw me into a flare, just the thought of this scared me to death. Not to mention the thought of having another miscarriage also frightened me as I already had two.

Now I am 40 years old and a lot of my friends have young children and here I am with older children almost out of the house, close to having grandchildren but if I would have waited or if I wouldn't have gotten pregnant when I did I may never had the chance because of Lupus. I have several friends that are in this very situation right now and I feel so bad for them and at the same time I am feeling very thankful and blessed. Even though getting married and having children  young was hard financially I would not change a thing, I love them with all my heart and soul. 

Grieving....

How long do you grieve your old life? I've been diagnosed for 7 years and I am still going through the grieving process. :( This cannot be normal. I have always been such an active person, as a teenager I loved to be in the sun, water, outside, skating, riding my bicycle, walking through the woods, anything but being inside doing nothing. As a young mother, I worked a full-time job, took care of my kids, took them to their doctor's and dentist appointments, took them to their extracurricular activities, did the grocery shopping, did all of the cleaning and chores around the house, I hardly ever sat still and now that's all I seem to do. I see what all of my friends are doing and I wish my life was different. My kids are older and almost out of the house, what am I going to do when it's just me and my husband?  This should be the prime of our lives, we should be able to travel, etc but I just don't know if that will happen. All I can do is pray this disease gets under control or goes into remission and I get some of my life back. I am tired of watching it pass me by, there are so many things I could be doing, so many things I have missed out on, therefore my kids missed out on. But I know there are things we have done that we have learned to appreciate a little more. We have all learned not to take things for granted and to appreciate the little things in life. We have spent more time as a family and Hope and I have spent a lot of time in the car to and from TKD. That has been our thing, sometimes afterward we go out for a treat, those are memories I hope stick with her for life. 

We must make the most of the life that has been given to us, things could always be worse, I need to remember that more often.

May is Lupus awareness month

this is what I take to survive and function

Can't let lupus win.......

May is Lupus awareness month and now more than ever do we need to raise awareness. My friends are flaring, lupus is attacking them in bad ways, many have died over the last year or so. We need better medications or a cure for this disease. This disease not only attacks our bodies but steals our joy, our happiness, and puts us in a dark place and leaves us there and we don't know how to get out. We then wonder if it's worth fighting for, we ask ourselves what do we do for society, for our family? How can we contribute when we're in the bed and can barely take care of ourselves? We ask ourselves what do we give to the relationship to our spouse, our children and our friends? It's not a nice place to be and I hope each of us can rise up and stand up to this monster called lupus, we can't let it win, we are stronger than that, we can do this..... Together.