Tag Archives: autoimmune

On Mom’s time

My Mom has a rare condition where she has a naturally grown shunt in her liver. The doctor said she was born with it. But over time and at her senior age, her body is beginning to work against it. This means her ammonia levels are always high. Now after, four years of pretty much the same treatment, the medicine (at times) is not enough.

This year, my sister and I, see her struggling more. There is a fine line on whether her behavior is all due to the ammonia or could be mental issues like a decline in her cognitive skills.

On a recent trip, my mom, sister, and I shared, she showed signs that concerned us. Signs that we were thinking could be dementia. Thanks to God on our return from trip, Mom had an appointment lined up with her neurologist. At this time, after an MRI, it has been ruled out.

Now that we know her condition is all due to the ammonia, we’ve been told to keep an eye on her different than before. When she hits those high levels, she’s unaware it’s happening. Life has changed once again. My sister and I no longer feel comfortable in leaving her alone. We also know the control we somewhat had in our day with her has taken another twist. Days, like I’m about to describe, made time stop.

First let me rewind a bit and describe our typical day. We would do some routine errands like going to Walmart. What typically would take 30 minutes would run into an hour or so. Trying to get her to do what she needed quicker time was my aim. I would lose my patience since it would take a while for her to decide what she was looking for or her physical movement would slow her. It wasn’t that I didn’t care about helping her do what she wanted or needed to do, it’s just that I wasn’t seeing the bigger picture.

Now turning to this more recent outing, we had already been in the store for some time. Her focus was off as she would drift in thought of why she was there. We were coming down a main aisle and approached a display of artificial flowers. These were no where on her list, but she wanted to suddenly get some for her room. As I see her reaching to grab some, it just hit me. The distance from me to her changed. I felt a pull in my heart. The conviction came in strong. That I wouldn’t want to be anywhere else. That these flowers were the only thing that mattered. And my whole vision by the grace of God showed me its importance.

I don’t care anymore. I don’t care how long it takes to do routine things with my mom. I don’t care that she asks me the same questions every time we go there or anywhere. “Should I buy this?” “Should I take my sweater?” “Do you think it’s cold in there?” “Have you checked the mail?”

I’m grateful too my sister and I are honest with her with this all. Explaining what the doctor found and what we’re seeing in her. She acknowledged she’s glad too even though we know she may not fully comprehend what it means.

My prayer now to Our Lord is that He will grace her with better health and that her condition does not get worse. That my family and I can be attentive to make her live the rest of her life with comfort and peace. And if my life, my sister’s life, family’s life is just to respond to her – that we push ours aside for her well being, then we do. I know we just want her to be cared for and safe.

I thank my husband and thank God a million times more because He knew how much I would need Ruben. Not just for the sake of my soul, but for this time in my life. My mom too.

Amen, amen, I say to you, when you were younger, you used to dress yourself and go where you wanted; but when you grow old, you will stretch out your hands, and someone else will dress you and lead you where you do not want to go.” – John 21:18

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Help us Lord! Help us draw nearer to you. +++

Shake the dust

During these days as I’m dealing with a lupus flare triggered on by what is referred to as “overdoing it”, it has me reviewing my life as these occurrences often do.

For one, “overdoing it”. For someone else doing same task, may cause some minor fatigue. Nothing that a good nights rest won’t heal. For me, it puts me out of commission where I have no energy, get exerted easily, body aches (pangs in bones), and fever like spells. Thanks to God, mild, compared to others who suffer flares.

This week I thought I would have open to catch up with some friends and family. With Thanksgiving being next week and the busy holiday season beginning, I thought I could get to some undivided visits but this will have to wait.

With the flares and change in plans, it makes me revisit a repeated life encounter. A situation that for 17 years I’ve had to deal with multiple times and still find people who do not understand – the I’m sorry I have to cancel – or – I’m sorry I cannot attend. Either because I’m not feeling well or to pace myself for events that I had to prioritize.

When these situations come the most exchange that may happen is simply a decline to an invitation or cancel out to a casual meet up. If it permits, person asks, I will give more detail why, which helps me relieve stress. If it doesn’t happen, then I can most likely assume they don’t understand or don’t care. That may be harsh, but at this time in my life, I can basically read it.

So what does this mean? It means I no longer worry for the other person’s reception. For years, it would concern me. Worry me. Make me feel like I would have to make it up to them. Even if I felt I proved I truly cared about them or demonstrated that my relationship to them was important to me in multiple ways. But there are some who count things against you and just like that, nothing you did or who you are is enough to show you mercy.

This passage in Matthew 10 comes to mind when I struggle with letting go of the situation.

MATTHEW 10:12-14
As you enter a house, wish it peace.
If the house is worthy, let your peace come upon it; if not, let your peace return to you.
Whoever will not receive you or listen to your words—go outside that house or town and shake the dust from your feet.

In my bible study, it was taught this means to move on, let go. If you did what you can and they still don’t receive it, it’s not your problem, it is theirs!

Does it mean you don’t forgive them? No! Don’t remove yourself from them with a hardened heart. Give over the situation to the Lord, let Him take control. It just means you cannot waste your energy on something you no longer have peace with.

It has taken me a while to get to this point in my life. But as I get older with lupus, the challenges are tougher and at times I just go for what is easiest. Some will understand and some will not.

Thank God for those in my life who do understand.

Time

Lately, I’ve been in some kind of mode of embracing the present.  It’s not that I have never had these moments before like when at a family gathering, or a trip, or an outing.  I have had many that I’m thankful Our Lord push that button in me to recognize so that I can grab onto it.  But lately, it seems to be more prevalent.

As I mentioned before, my Mom lives with us.  It’s now going on 3 years.  However, these last months, she’s been staying with my sister in Tucson. My sister and I both knew this is how it would probably work out with my sister now living in Tucson. It gives Mom the flexibility of having both of our homes to live. Tucson is her hometown and we both want her where she’ll have most peace.

So in this time, Mom not being home with me, I have the time to work on things or be a part of things that I have held off. That’s mainly my issue since I tend to give my attention fully to her when she’s with me.  I have not mastered to balance my life and responsibility of her very well.

These days, in whatever it is I’m doing, I find myself stopping to a moment or fixate on what I’m doing more often. It can be anything from a physical ability or the wind hitting my skin. A memory from childhood or a book I’m reading that will make me stop and center on it.

When I recently saw my Mom who I hadn’t seen for three weeks, I just held onto her. Recognizing how I really have missed her. Thanking God to have the time shared.

I’m not sure I fully understand why it’s happening.  Part of it, I admit, could be the world news.  Random shootings, natural disasters, family suffering…I also think about where my husband and I are in our lives.  I’m 46 yrs and he’s 51. The clarity is there that we are letting go of that youthful time and entering the next season.  We have lived in our first home for 19 years. And with some recent home projects we have done, I have remembered the memories we have had or our marriage has had living here.  Also being aware of some blessed wisdom we have received and awareness of faith in our lives has added to that present moment thought process.  In no way am I saying that we are a well oiled machine and got it all right, we are learning each day. But to know and use that basic toolbox of faith and apply it to our lives, means so much at this stage in our lives.

I take this current situation in my life as a gift. I’m sure many of us have it.  I’m going to try record about it more.  With time passing by fast it seems, I at times get a little anxious because I physically can’t see all I would like. I truly love each one who I know on the most part understand. I can’t get to everyone in the sit down way I would like. Most of the time, I have to compromise how I use my energy. But I can for sure say, I have remembered a life event or given a prayer for each one in present moments each day as I think of them.

I just found this article.  I’m sure I’ve learned about this before, but lost its significance.  I’m linking it to share so that it may guide you too.

It’s from Catholic News Agency titled ‘Are you missing the gift of the present?’

https://www.catholicnewsagency.com/cw/post.php?id=67

Thank you Lord for giving me this gift I didn’t first recognize as one. Now I will be sure to embrace it even more.

Reveal

Lately, I’m torn on whether to make known my identity.

When I first started this blog, I never had intent to give more information about myself.  Only wanting to share my experiences to help others in their journey of faith.

Does sharing identify help or does it change focus to look at me and see me instead of my life story?  Because if you were to see a picture of me, you may not see that I have had the life I had or have now.

From this blog, I also maintain an Instagram account.  It gives a quick feed to what is happening in your blog or just simple insights.  Without intending it to be, it has brought a community I had no idea existed.  I receive much encouragement from it, as well as, I learn more about the faith that what I thought could be possible from this social media.

Honestly, revealing does have to do with the issue of confidence for me.  Something I’ve struggled with all my life.  The rejection, people misconstruing your intentions with pride, the pressure to portray who you truly are.  The Instagram account wasn’t meant to fit a mold with other Catholic women, which I think (at times) accounts appears to show.  I’m not saying it shouldn’t because I think it does benefit some.  For me, the account is to express my faith in many areas of how I practice it.

For now, I think I will leave my account the way it is.  I enjoy it and love to share. If it is fit for me to reveal, for a circumstance or situation , I will decide at that time.  Until then, I’m thankful for those who follow this blog and Instagram account.

 

 

How the great pearl and Lit found me

I just finished ‘Lit’ by Mary Karr.  I had been pin surfing  Pinterest searching for books to read and came across this suggestion.  The summary made me interested.  Two things stood out, addiction and God.

When I choose a book, it depends on timing in my life.  Books centered on food  such as aspiring chefs, chef stories, restaurant owners, and as a bonus most books contain recipes always amuse me.  Of course, I like to read about the faith, but haven’t tapped into one lately where a story is told on how faith became real in their life.  And I underline bold face REAL.  Memoir faith based books I have read are well, too vanilla.

Another book along the lines of ‘Lit’ titled, ‘Drunks and Monks’ by John Carmichael, gave me something some faith books just don’t.  And that’s concrete, hard core (at times) experiences detailed and how each segment of their life shaped them into the strong faith they have now.  Not just information on if you are experiencing a struggle, pray to God or learn these exercises and you’ll find peace.  But down right, gritty stories that make me grab onto the faith in a deeper way. I get  it because in my journey, I can relate.

So, back to ‘Lit’. ‘Lit’ is a memoir written by Mary Karr.   Tells her struggles as an adolescent, her parents who are dealing with their selfishness, her addiction, marriage, birth of son, experiences of becoming a writer, and finding Jesus.  All this in language that engaged me into a rich, twisted, swirl of captivating literature.

As I began writing for this blog, I noticed that many female, Catholic blog writers carry a certain tone.  I know it works for many, but for me, it wasn’t calling my attention.  I don’t know if it has to do with age so much as it has to do with upbringing.

I feel as though there are many Catholic women who are being left out of this sphere of unity/belonging.   Some may feel they need to shy away from their past in order to get on board. It’s not that the messages these certain point blogs cannot be applied in anyone’s life, it’s the content of the person’s life, to me, is what helps to relate to it.  So many different paths go untouched.

Karr shares deep struggles with addiction, not up to par with other students, parents, coworkers. She talks about seeking God and allowing the first step towards prayer which is a few words mentioning God.  All this develops into daily exercises and references her prayer life,  baptism,  and the Catholic Church.

Her writing takes you on a journey of sights, smells, and feelings.  It made me think of my own childhood.  Many points in the book, I would stop and recall a memory which either brought me joy or pain.  There were moments I had forgotten.

What’s even more crazy is the timing of when I finished this book.  On Sunday, July 30th mass reading, the gospel was about:

Matthew 13:44-52

Jesus said to his disciples:
"The kingdom of heaven is like a treasure buried in a field, which a person finds and hides again, and out of joy goes and sells all that he has and buys that field. 
Again, the kingdom of heaven is like a merchant searching for fine pearls. When he finds a pearl of great price, he goes and sells all that he has and buys it. Again, the kingdom of heaven is like a net thrown into the sea, which collects fish of every kind. 
When it is full they haul it ashore and sit down to put what is good into buckets. What is bad they throw away. 
Thus it will be at the end of the age. The angels will go out and separate the wicked from the righteous and throw them into the fiery furnace, where there will be wailing and grinding of teeth. 
"Do you understand all these things?" 
They answered, "Yes." 
And he replied, "Then every scribe who has been instructed in the kingdom of heaven is like the head of a household who brings from his storeroom both the new and the old." 

It’s about truly letting go of one self’s bonds, walls, crutches, addiction, sadness, brokenness, pain, unfulfilled, struggles, unaccomplished.

It’s everywhere I think I am in my life.  It made me realize due to some things going in my life right now, how much I still have not let go from my childhood.  Karr’s book resonated with me in my own life with similar experiences.  Being diagnosed with Lupus gave me the push to learning about my faith, walk with Christ, but over the years til now, it kind of stalled.  Life became what it did and I lost a bit of listening.   When you running the daily rat race, you don’t!   You don’t realize how much more needs to be pulled out of you so that our Lord can rework you.  My upbringing and the loss of nurturing a child needs can still rear up its ugly head as an adult.

By working on this with Our Lord, helps me to open up to the next stage in my life.  Where does He have me going next?

I hope and pray this is the beginning of that to whomever is reading this post. I’m ready to let go!

May our Dear Lord grant you the awareness you need to see what other areas of your life you need to give up for the pearl of great price to buy that life only Christ can give. Keep praying you want Jesus to take areas of you life still holding you down. +++

Poem X

In this time
I find I
Though numbing as flight in the air
My mind goes
My body foes
God is always near
No drug I took
Just the humdrum of this thing
That comes over me
Stalled like someone who has tripped
Pulling, crawling
Coming to
‘Til a song breaks through
My dependence is new

Ground control to Major Worry

Control.

The battle of ourselves and understanding Our Father who is in control.

Repeatedly throughout my adult life, I have dealt with self control.  I had life experiences that only made me teach myself to depend on my responding emotions.

Mechanisms to guard my heart from hurt, pain, confidence, courage.

As I explained in my blogs of transformation from my lupus diagnosis, is where the self control changed.

However, even after years of growing deeper into my Catholic faith, being attentive and obedient, I find myself cave in at times and throw myself back to the pits of self control.

Mostly, when it comes to family issues that grab me with anxiety or worry. Things I wish I could help, but know I physically have no power.

Why is that?

At times, I want to blame it on the lupus. Stress is a factor of what causes lupus flares.  I figure, my body does not have any tolerance for worry so as soon as I respond to it in my body, I shut down.

Then, I think, it's my age.  Yes, my age.  I'm older so any ounce of worry, I shrivel up.  That's got to be it too… right?

What I do know is that when I find myself in worry over something, I do feel the Holy Spirit taking hold of me.  I will remember to turn it over to Jesus and ask Him to take it.  It may not always be that immediate moment, but it does happen.

What I want to attain, is that I don't cause 'me' to happen at any situation in life.  I desire my soul to respond by His holy will and just issue a sense of peace to whatever comes my way.  I mean, I imagine that's what Pope Francis does and our religious priests and nuns…right?  They always look so at peace.

Is this anxious/worry thing a Cross? I wonder, but don't put too much thinking into it since I'm convicted to not focus on it.

In my family, there are many plagued by worry. To the point where it transforms into high blood pressure.  Thankfully, I do not have that. But I know my family is prayerful. And whenever something strikes us, I am the one to say to pray.  We all do to each other at times. Thanks be to God!!

At this stage in my life, I'm thankful Our Lord helps me to recognize it. I'm thankful my prayer is always asking God to help and take the issue/situation.  That I know I'm not stranded in the desert.

And that's just it!

That we live this life continually knowing we are not god.  Life will always give us stress.  I am not perfect. Will I ever be? That's not my concern either.  But that I get stronger in what I know Jesus wants from me.

"Be thou my Wisdom" +++

"I have told you this so that you might have peace in me. In the world you will have trouble, but take courage, I have conquered the world.” – John 16:33