Pictures of The Past

A picture is worth a thousand words along with a few dozen memories and emotions. Capturing the past the heartache of what once was bubbles over.  Sometimes, I avoid looking at my photos, but other days the temptation of a walk down memory lane wins. The days when laughter was plentiful and sleep was not vital.  Staying up half the night with friends was normal. And of course, anything seemed possible. Not knowing that all too soon minor aches would explode into full blown take over your entire life chronic illness.

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I look at the girl in those pictures overflowing with laughter and pure joy. The insecurities going through my mind as a teen now seem silly. Things weren’t perfect, but they appear that way. The past usually seems easier as we look back.  There are still days I miss the people who left me. The friends who said they would be there, but left.

 

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It’s true, you adjust to the chronic illness life, but little things happen that make you grieve your past. I try to not get carried away in the what if I wasn’t sick game or the things I miss. Everyone asks what you miss most, in reality, I doubt any of us can narrow it down to one thing. I miss how active I once was the energy. Being out in the sun or at the ocean. I miss dancing, hiking, and doing mission work. I miss my hair. Not needing to worry about passing out or running to the bathroom. I miss my old bad days.

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All in all most days I do well with being chronically ill emotionally. I have adjusted and know in my heart that God will use all the pain, symptoms, and every other little chronic illness thing for His glory. He has allowed Lupus and these illnesses to be a part of my life, therefore, I am okay with where I am. Yet, I am still human. I become anxious, overwhelmed, grieve, and ride the roller coaster of emotions. After last April, my emotions went on vacation, but they are back and we are learning how to live together once again.

To be honest, most days are hard in some capacity. Currently, this includes minor meltdowns, severe chest pain, dizzy spells, joint pain, and bladder pain. I have another halter monitor (I will do a review- if I don’t throw it in a lake first). A bladder infection with a side of kidney stones. To top it all off my summer class final is coming up. My liver is holding up though I am cautious due to the fact I need to taper off steroids.

This post is a bit long, but I will be doing a Bible Study update post to let you know more about online Bible studies, which I am excited about!

Can you relate to anything in this post? If so, let me know in the comments! You are the reason I share about my life as a spoonie.

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A Caregivers Perspective. Part Two.

Mary Jane is a selfless caregiver of her husband and daughter. She shares some of the struggles she has encountered on this journey. Daily she demonstrates what a hero looks like. I hope her story will inspire you.

Fear of getting unwell

Written By: Mary Jane

Keeping on alert all the time can be exhausting and tiring. My husband was officially diagnosed in 2010 with Systemic Lupus Erythematosus and our daughter was diagnosed in 2013

They both suffer badly and daily from this terrible disease my husband stopped working Christmas 2013 after being hospitalized due to the lupus attacking his spine this has created stress but also is easier as now I don’t worry about him driving he has since had a number of TIA‘s and neurological problems has spent 7 out of 12 months in hospital he is no longer able to drive as he forgets where he is gets very disoriented easily, also his medication does not allow him to be able to drive safely.

Our daughter was able to get an extension on finishing her schooling she has been in and out of hospital due to kidney problems also caused by the lupus but she is able to do her college degree from home when she feels she’s ready. The lupus for her has changed her but also changed her relationships with her friends, as a lot of people in their early 20s are able to do their own thing without thinking twice.

We have two other children that help out a lot but they also take on a lot more than children their age which as mum I worry about as its not normal for people their own age to be concerned about dad falling or their sister being able to get through the week without her kidneys being unable to function.

I also home school our younger two children as God lead us to do this 4 years ago and now I understand why as it actually is easier for me, that way I can stay home more and watch over my sick husband and daughter. It also makes it easier for our children as they see what happens on a daily bases and when they have to go to hospital its easier for them to keep the daily routine going they also take it in turns to look after Daddy by doing their days worth of school in his room where he is as hes unable to be out of bed a lot also if he is in hospital they take their school with them to do and it helps him to not feel left out.

As a care giver of two with Lupus it is difficult to balance the daily things that need doing but also not being to busy to not have any compassion and care.I now notice that I do get tired but I will never tire of looking after them as I married in sickness and health.

The health is the easier part the sickness is the test part I miss my husband hes my best friend but his memory is very bad now and I have to try not to be offended of feel rejected when he doesn’t remember anything that we did together or I did for him.  He gets very anxious when I’m not around or if I have just gone to the chemist and he wakes to the children here but me not which makes him very anxious.

Also as a mum I must always remember that my daughter relys on me to be mum but also to know what to do when shes unwell, or a doctors appointment, or when someone is putting pressure on her like a friend wanting something from her that’s just not possible as her friends have been able to get engaged or go out as a young person I know shes watching it all wondering whats going to happen but I also pray that she is able to trust me and know that I will always protect her.

And for our other children they are fabulous at helping but I always have to keep in close balance that they need mum. It’s a lonely road for a carer your constantly putting fire out and constantly watching for things that never had to before it puts a strain on everything.

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Throw Back Thursday

January is birth defects prevention month, it should also be birth defect awareness month. Birth defects are one of those things people don’t talk about. Many view people with them as outcasts. It is true that some defects are due to carelessness of the expectant mother, however there are many times that there is no way to prevent a birth defect. The cause of birth defects goes unknown for many. In fact some people live a good portion of their lives without ever knowing that they have an internal birth defect. I am one of those people. I never suspected that I had a birth defect and neither did my parents. It was an accident that I found out.

Last January, I went to have cystoscopy. In simple terms this means I had a bladder scope. There are a number of reasons cystoscopy are preformed, for example to look for interstitial cystitis, other bladder disorders, or kidney stones. Generally this is a short scope. Many people remain awake for it. I insisted on being put to sleep and was informed later on that it was the right descion. Right before my cystoscopy I met the doctor who would be preforming the scope on me. We discussed my symptoms and pain. He decided that it would be beneficial to look in my kidneys to see if I had additional stones. As we made our way into the OR, the doctor instructed one of the nurses to clear the schedule for the remained of the morning because my scope would take a while.

My scope took nearly an hour. I woke up in extreme pain. For me the cystoscopy was by far the most painful scope I have ever had done. The nurse begged me to go back to sleep, but I was in too much pain to rest. In addition I needed to use the bathroom. The nurse insisted that I didn’t need to go and argued with me for a while before going to get my mom. Of course I was sleepy when she came back. I could tell by the look on her face that they had found something during the cystoscopy. Fear and joy leaped within me. Joy that someone found something. Fear of what it could be. She told me that I had three kidneys and three ureters.( The doctor was so excited because he has never seen this before). Then explained that I had a stent in my left ureter because they had seen something on that side. I was in awe that I made it to merely a few days before my twentieth birthday and never knew that I had three kidneys.

The medical term for this is a fused Supernumerary Kidney. The kidneys on my right side are fused together which is why no one noticed I had an extra. My right ureters are twisted together. Less than 100 cases are documented worldwide currently. If it is caught during childhood it is removed. Many times the extra kidney begins giving the person trouble during their late teens to early twenties. No research is being done about supernumerary kidneys because it is so rare. Most doctors have minimal knowledge about it.

Nearly everyone who hears that I have an extra kidney think it is cool and ask, “Can you donate the extra one?” Sadly I can’t. No one wants my extra one, it would just give more issues to them. My extra one might be the cause to some of my kidney issues as well as some of my abdominal pain. It does not function a 100%.