Tag Archives: Lupus

Lupus and the Corona Virus

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So I am one the many the media keep talking about with a compromised immune system. Do I look unhealthy or sick? Probably not. Can you tell that I have Lupus? Definitely not because you cannot tell from the outside. But I can tell. I know my Lupus by the fevers I get on a daily basis. I can tell by the aching joints, the rashes, the fatigue and twice daily necessary steroids to stay somewhat normal so I can make it through the day. I know by the year round anemia and decreased white blood cells. Truth is I may never know if I have the Corona Virus because I live with those symptoms daily. My life is all the symptoms especially in a flare. My blood work always comes back low and abnormal. Not a pretty picture, but my reality.

However, and I am probably in the minority here, my health is my biggest concern not yours or the public. I mean the public has a part by not knowingly going out with contagious diseases, but not going out right now where anyone can have been exposed and not know is all me. In the midst of all this I need to quarantine myself and not be out exposed. The truth is you do not know what to look for, but I do. So since my disease is one of those that is mysterious and easily covered up then it is up to me to stay safe. Reality is you would have no idea my immune system is compromised unless I told you. So I pray for all the people like myself that others eyes are opened. I pray my symptoms and yours stay mild. I pray all your organs stay active and well and that the good Lord brings a miracle quickly for not just this disease but sickness and disease everywhere including the heart disease of not knowing Jesus!

Vanity over Sanity

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It is officially 2020 and it seems that everywhere you look it is about weight lifting or weight loss…getting thin or getting bigger…going to the gym or going to the grave….everyone has an opinion. Something I have learned from being married to a man that seems to also be married to the gym is that the better they look…the more insecurity there seems to be. I am not saying everybody, but surprisingly more people than I thought struggle with this idea of getting older, getting fat or getting behind. Some go to shortcuts to create an edge through shots or surgery or pills etc. All of that leads to a quick fix for the moment, but if the mind is not right the self doubts will always come back. In short, it seems some choose vanity over sanity and the issue does not seem to be disappearing anytime soon.

My husband and I argue about this a lot because with Lupus, I need to work out, but I always feel so tired. I always feel like if I had an extra hour in my day it would be for anything else than the gym. However, what I am finding is I actually do feel better whenever I get in there. I am not like my husband with the discipline to go at whatever cost, but I have found myself trying to make it more than I ever had previously. Something about the pre-workout, the right music, the right protein shake and being by myself in the gym excites me. There are all kinds of workouts, but I am still a good old fashion gym rat through and through. (Just do not check my attendance please!) Here lately my go to has been nutrition shakes that cost half my salary, but make me feel like I am putting forth effort to have that beach body by July.

If you saw me you would likely roll your eyes that I am even writing about weight loss as I am a small girl, but my issue is to turn fat into muscle and not look like the wind could kick my a@#. It is true…my arms are weak, but my mind makes up for it. I pray at some point that we can all get to a place of appreciation, of self check when we need to get it together rather than others opinions deciding for us, a place where vanity and sanity can coexist and aging will be just as sexy as Carrie Underwood’s legs. But until then my plan of action is to tell myself and others they are beautiful and worthy and enough. To stay healthy for life, to stay emotionally and mentally grounded for the good of your well being and be okay with the person God created whatever phase of life you are in. 2020 will be the best year yet!

Lupus Limits…But Does Not Stop

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I must admit I am one of the fortunate ones living with Lupus. My symptoms are mild, the meds I take are working, I was diagnosed quickly, my vital organs are unaffected; seriously, I am fortunate. My Lupus mostly involves my nervous system, my endocrine system and reproductive system. All those systems or words I would have never known before my diagnosis so basically my nerves, blood and ability to have babies. When I flare and I do weekly, I get fatigued due to chronic anemia, my joints ache like a 90 year old man, and my fingers turn white or purple. Right now my flare includes Pleurisy which means the lining of my lungs are inflamed…the sun is my enemy. Through it all I am grateful because my God has used it for good. This disease brought me a child through adoption that I would not have ever met, the sick days help me to appreciate the healthy days and my experience has helped me to encourage others going through similar things. To be in my low thirties with a chronic illness triggered by such common things as the sun and stress is intense, but I am alive and choosing to stay alive (there are some flares so bad I have felt like death) and choosing to live my life rather than let it live me.

Insert soccer.

When I was being diagnosed I told my doctor I played soccer. His response: not anymore. He went on to tell me that my blood levels showed low iron and chronic anemia so any major physical activity was dangerous. I took a few games off, but continued to play. The fatigue was intense after sunny games but we always had subs so it worked. However in the fall of 2016 I was in a major flare and for the first time in 15 seasons I had to say I could not play. It was defeating as I knew I was really sick to skip soccer. 

That was 2 years ago. I probably felt good enough to play again, but new players join and your team changes.  So I was not asked the next season and then I think the team took a season off so when I got the text to play I considered it. My biggest concern was that my lungs are inflamed right now which feels like a heart attack while resting and like an asthma attack when running-not too smart to say yes, but it will go away.  I also knew it would be hard after not playing two years so I had to speak to my hubs since he would be watching the kid and me if I get sick, but when he cheered me on I went for it.

Last night was the first game and it felt good. I was nervous all day, resting my body, drinking water, taking medicine…but it all felt good.  My biggest fear was my inflamed lungs and they were tight after long sprints, but two subs on the side could be called in at any time.  We won and I got some good touches, but most importantly I played. I was fearful two years ago that I never would again. So unsure if it was a good idea that I kept it a secret so no one could talk me out of it. But I feel okay the day after and since the games are at night, I think swimming will kill me before soccer ūü§™ 

Lupus does limit me, but it will not stop me. Soccer is what I do for myself. On the field I feel my sexiest and my mind is cleared.  I feel badass to be 38 and still playing. The best part is I challenge my mind and body and grow closer to the Lord as I praise him for the chance to show good sportsmanship and meet others with the same passion. Today I am grateful to be a soccer player living with Lupus again. My call of action to those without chronic diseases is to go out use your body. It is a beautiful thing of science and should not be wasted. Do not waste your health!

You Take the Good with the Bad

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We are on Facebook Fast Day 10 and I think I am slowly getting used to life without it.¬† I don’t find myself missing it as much since I have not been on it for ten days.¬† I do catch myself wondering about certain people’s posts about various topics or feelings about world events that I know would have something to say, but I enjoy being separated from the drama.¬† A coworker will ask me if I saw so and so’s post etc., but I can honestly say no and I have no idea what is going on.¬† I do feel isolated from current events or from social happenings around the community; the main reason I joined is because a friend was moving to Australia and a different one got engaged and I had no idea because they thought I knew through Facebook.¬† People don’t call each other to share news or even email…they just post it on Facebook, so I feel I am missing out on that, but you have to take the good with the bad.

I went for my semi-annual Lupus check up today.¬† It is only on these days that¬†I remember I have a chronic disease that is in constant need of monitoring.¬† Only on days like today where I see how bad my disease could be that I appreciate the mildness of it all even if it is inconvenient.¬† For the first time ever, I got a bone density scan to measure if my bones were deteriorating due to the steroids I take daily.¬† I did surprise the machine guy with my scoliosis.¬† He thought I was sitting straight at first, but then realized it was my back and calmed down.¬† Thankfully the test had positive results.¬† We took my usually two vials of blood to monitor that the levels stayed the same and then did my normal check up.¬† This time I had a¬†concern because my scalp has developed these lesions that are causing my hair to thin in areas and I am not having that hair loss!¬† He recommended a visit to the Dermatologist but assured me it was an effect of the disease and the hair will likely grow back.¬† I can tell that I am in a flare or about to be because of my extreme weight loss.¬† I am down five pounds, but eating more or as normal.¬† I like the natural weight loss, but will not tolerate hair loss…I guess you got to take the good with the bad!

Finally, my son is in the Terrible Twos in full swing.¬† The amount of “mine” “no” “I don’t want to” and pure break downs when things do not go his way are intense.¬† We call him bipolar Callen because one minute he is on top of the world and the next he is sprawled out on the floor.¬† We are trying to balance the thought that he is learning these bad behaviors to get our attention¬†with this is just the age and we must push through it.¬† We are constantly reinforcing him to use his words and express his feelings while punishing using time out when necessary.¬† The good thing is our caretakers report he does well for them and the meltdowns are non-existent or minimal, but not sure why we get all the good stuff.¬† Hoping we are not encouraging the bad behaviors without knowing it, but we have no idea are just trying to do our best.¬† As I am fussing at him for taking out the chicken hammer, spilling the bubbles, putting his sock in the water and carrying the laundry basket into the shower…I thought I was about to reach my breaking point.¬† In my mind, I was thinking “we are not going to make it out of the twos” and then my mind went back to the mother that lost her 17 month old girl on Thursday and I know she would give anything to have the terrible twos.¬† I know she would sell all she owned to have one more day of spills, tears, messes and meltdowns.¬† I appreciate that I am blessed to have these moments with him…the good ones and the bad.

The good news is: Facebook Fast, Lupus and infamous two year old behaviors–I am blessed with the good and the bad.¬† Humbled tonight in so many ways especially knowing that the sweet parent tonight endured her child’s viewing.¬† I know God is good and He loves us.¬† I know God is faithful and His promises are true, but this one has rocked me.¬† Why give that good and perfect gift to later take it away?¬† I know she is in a better place, but my heart hurts at the thought.¬† Her story has rocked me today.¬† I know she will get up and breathe and take it day by day and hour by hour…I know she will find the strength, but I wish she did not have to.