Medical Issues

So Very Sick

So Very Sick

So Very Sick

Good gracious, I have been So Very Sick.  What started out with a bladder infection, ended up with a co-vid19 scare (other people scared of that, not so much me).  Honestly, I have never gotten a bladder (or kidney) infection until about 2 years ago.  Since my bladder sling, I’ve had 3 and they suck.

I have discovered that taking Cipro is like eating a tic-tac.  A tic-tac that makes your pee orange.  #GoodTimes  As luck would have it, I have a dear from who is a Physician’s Assistant and when I contacted her, she was ready to help.  Since I knew that Cipro didn’t work, we moved to Macrobid.  Take it 2x a day, with food, for 12 days and it will clear it up.  I did as I was told.  Considering I trust only a handful of humans…she is one that I trust.

Do You Have a Doctor You Can Trust

It is easy, for some people, to trust those in authority, especially when it comes to our health.  Me, however, not so much.  I have an amazing doctor, that I have known for a long long time (think probably 10 years) personally and professionally.  He has heard and seen some really difficult things in my life and the lives of my family.  I have been known to show up at his house LOL.  He’s a good one.  When I can’t see him, his associate is a PA and is as brass and ballsy as I am.  We have a good relationship and I’m sort of honest with him.  The nurses there, I have an amazing friend/professional relationship.

I say all of this to say that I’m perfectly happy with my health care providers.  Yet, there are some things I never ever talk to them about.  They will never get near my girl parts and I will not discuss those parts with these men.  I mentioned it once and I giggled at the beads of sweat forming on his forehead.  He would do whatever I needed…I just wanted to make him squirm.  We both got a good laugh out of it.

Girl Parts Doctor

I did meet a great dr who did my hysterectomy and my bladder sling.  So kind and I used about 80% of my words with him.  He was good and did a great job on my surgeries, but he left that practice.  Then, I remembered my friend who dabbles in a little bit of everything.  One, late night, we were texting about a book I wanted her to read.  I divulged my pain and some other “girly” issues I was having and she was a wealth of knowledge.

She is just who I needed at that moment.  God is good like that.  She fixed me up.  With my bladder infection, she prescribed Macrobid.  She knows my drug allergies and this is not one of them.  We thought it was safe and would take care of the issue.

Here’s the Thing

Since I went to our holistic dr in St. Augustine, my body is different.   I have had more sensitivities to meds than I have EVER had before.  These are meds I have taken for years and now, they make me feel “off”.  Also, my hair falls out, I am lethargic, grouchy, and so on.  The anti-depressant I took made me throw up for about 9 hrs.  This is a med I had been on for several years before going to the holistic dr.  So.  Freaking.  Strange.

Co-Vid19

With this going around, every single time I sneeze or cough people duck for cover.  Listen, I have allergies.  Really bad allergies…to cats…I have 12 cats, so 1 + 1 = 2.  This time was different.  I was down with the bladder infection, but it was manageable.  I took my first dose and I started feeling nauseous.  Almost like morning sickness.  I powered through that moment.  Honestly, I was just thinking that I didn’t take my meds with food.  I was diligent after that.

I took it on a Wednesday night and Thursday morning I was dry heaving for the next 6 hours.  It was awful.  I had nothing on my stomach and couldn’t keep anything down.  There were no other symptoms until my fever hit.  That’s when my mom, other mom, and husband got worried.  I had been nowhere, so I could not have been exposed.  My symptoms were not consistent with Co-Vid19 symptoms and I was too sick to move.

I contacted my EMT friend, who has been treating a ton of these cases, and my PA and neither of them had a concern.  Plus, I was fine the next day. Tired, but fine.  Then Saturday, I was great.  I didn’t take the meds on Thursday, Friday, or Saturday morning.  I did take it Saturday night.

Giant Mistake

Come Sunday morning, everything returned.  Dry heaving, stomach ache, and fever.  This time, I added in shortness of breath.  When I inhaled, I whistled.  Once I could keep liquid down, I took a Zofran and a breathing treatment.  Also, Tylenol every 4 hours.  Sunday was horrible.  Monday I was simply exhausted and by Tuesday, I was fine.  It has taken me time to get my appetite back up.

We checked and I have all the symptoms of having a Macrobid allergic reaction.  So, on a bright note, I had suffered through enough of the meds for my bladder infection to be gone.  Also, I lost about 4 lbs.  On a crappy note, I don’t really know what to do if (when) I get another bladder infection.

Proactive

I’m going to get some cranberry gummies, I have been taking probiotics.  Also, I’m drinking more water with lemon and cutting down on sugar.  I don’t know how helpful that will be but it can’t hurt to try to prevent it.  I’m very thankful it is not Co-Vid19.  I have had friends that have had it and it is no fun.

Wash your hands, wear masks, be mindful of the elderly, immuno-compromised, and young people.  Take care of yourself.  I am on the mend and I’m thankful for that.  Still, I’m resting more and really trying to listen to my body.

Hopefully, I can get back into blogging.  Got lots on my mind…just a matter of if I can get it eloquently out of my fingertips.

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Psalm 29 & Proverbs 29

Psalm 29 & Proverbs 29

Psalm 29 & Proverbs 29

Here I am, moving on down to Psalm 29 & Proverbs 29.  After verse 31 in Proverbs, I will continue on with Psalm and move to verse 1 in Proverbs.  Just an FYI for my own brain processing moments.

Psalm 29

Ascribe to the Lord, you heavenly beings,
    ascribe to the Lord glory and strength.
Ascribe to the Lord the glory due his name;
    worship the Lord in the splendor of his holiness.

When I read this, the first person that pops into my mind is our Associate Pastor and worship leader, Damian.  I have never seen a man ooze glory the way he does.  In the face of so many trials, he is there, giving glory to the name of Jesus.  It is pure joy to see him.  Frankly, he and his family just need to move in with me so I can see it daily.

His Voice

The voice of the Lord is over the waters;
    the God of glory thunders,
    the Lord thunders over the mighty waters.
The voice of the Lord is powerful;
    the voice of the Lord is majestic.
The voice of the Lord breaks the cedars;
    the Lord breaks in pieces the cedars of Lebanon.
He makes Lebanon leap like a calf,
    Sirion like a young wild ox.
The voice of the Lord strikes
    with flashes of lightning.
The voice of the Lord shakes the desert;
    the Lord shakes the Desert of Kadesh.
The voice of Lord twists the oaks
    and strips the forests bare.
And in his temple all cry, “Glory!”

Can you even imagine?  For real.  Can you EVEN imagine….”the voice of the Lord TWISTS the oaks and strips the forests bare.”

Straight up Truth!

10 The Lord sits enthroned over the flood;
    the Lord is enthroned as King forever.
11 The Lord gives strength to his people;
    the Lord blesses his people with peace.

Proverbs 29

Whoever stubbornly refuses to accept criticism
will suddenly be destroyed beyond recovery.

When the godly are in authority, the people rejoice.
    But when the wicked are in power, they groan.

The man who loves wisdom brings joy to his father,
    but if he hangs around with prostitutes, his wealth is wasted.

A just king gives stability to his nation,
    but one who demands bribes destroys it.

To flatter friends
    is to lay a trap for their feet.

Section 2

Evil people are trapped by sin,
    but the righteous escape, shouting for joy.

The godly care about the rights of the poor;
    the wicked don’t care at all.

Mockers can get a whole town agitated,
    but the wise will calm anger.

If a wise person takes a fool to court,
    there will be ranting and ridicule but no satisfaction.

10 The bloodthirsty hate blameless people,
    but the upright seek to help them.

Section 3

11 Fools vent their anger,
    but the wise quietly hold it back.

12 If a ruler pays attention to liars,
    all his advisers will be wicked.

13 The poor and the oppressor have this in common—
    the Lord gives sight to the eyes of both.

14 If a king judges the poor fairly,
    his throne will last forever.

15 To discipline a child produces wisdom,
    but a mother is disgraced by an undisciplined child.

Not gonna lie…I struggle with verse 11.  When I went to St. Augustine, the doctor asked me what I needed help with.  I looked at him, as bluntly as I am, and said: “I am angry.  All the time, for no reason.  Just angry.  I wanna just throat punch everyone.”  Needless to say, he kept his distance.  LOL  May I learn wisdom!

Verse 15 sticks in my throat, as well.  I have 7 children.  All of whom are totally different and have to be parented completely differently.  I’m big on discipline, yet with a couple of my children, discipline does not really work.  I feel this verse deep in my soul.

Section 4

16 When the wicked are in authority, sin flourishes,
    but the godly will live to see their downfall.

17 Discipline your children, and they will give you peace of mind
    and will make your heart glad.

18 When people do not accept divine guidance, they run wild.
    But whoever obeys the law is joyful.

19 Words alone will not discipline a servant;
    the words may be understood, but they are not heeded.

20 There is more hope for a fool
    than for someone who speaks without thinking.

Again, every one of these verses speaks to me in regards to a couple of my kids.  I have no peace of mind.  In my head, I am surrounded by my enemies ready to devour my children and me.  I pray for that peace of mind, that the words spoken will be heeded.

One of my children literally said last night that the things that were spoken were said without thinking.  This happens more often than not.  I just read this to that child…a blank stare where “words may be understood, bu they are not heeded.”

Section 5

21 A servant pampered from childhood
    will become a rebel.

22 An angry person starts fights;
    a hot-tempered person commits all kinds of sin.

23 Pride ends in humiliation,
    while humility brings honor.

24 If you assist a thief, you only hurt yourself.
    You are sworn to tell the truth, but you dare not testify.

25 Fearing people is a dangerous trap,
    but trusting the Lord means safety.

26 Many seek the ruler’s favor,
    but justice comes from the Lord.

27 The righteous despise the unjust;
    the wicked despise the godly.

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MIBG Scan

MIBG ScanWhat is an MIBG Scan?

According to the Cleveland Clinic, “An MIBG scan is used for localization of known or suspected neuroectodermally derived tumors, including pheochromocytoma, ganglioneuroma, ganglioneuroblastoma, paraganglioma, carcinoid tumor, and neuroblastoma.”

This is something that I have requested from several hospitals but was always told no.  Now, we are embarking on a new pediatric neuro who actually sat and listened. She read what I brought.  Asked appropriate questions.  Understood where I was coming from and was anxious to jump on Team Hunter!

#HunterStrong

She is allowing me (within reason) to dictate when we start our Dex.  I’ve successfully pushed it from every 2 weeks to every 4.  This month, I’m shooting for 5 weeks.  This, of course, is dependent on how Hunter’s body reacts.

In conjunction with that, we are continuing with PEMF therapy, horse therapy, Symphony of cells protocol, IVIG monthly, and the maintenance that comes with all that.  We are also heading back to St. Augustine for a one-day treatment.  Lots of holistic treatments mixed in with traditional medications and therapies.

MIBG Scan

I digress on the topic.  Today (June 13th), we (Hunter, Alyssa, and I) heading to Nashville for his injection.  He has to have that solution in his body the day before the scan.  We have also done pre-scan medication of Lugol.  It is a 5% Iodine solution that is taken the day before injection, the day of injection, and the day after injection.

Tomorrow will be scan day.  We should get the results back on Monday (I hope).  This is going to rule out ANY Neuroblastoma.  The longer a person is past onset of symptoms without cancer showing up with MRIs, CT scans, and blood work…the less likely that person is to actually have cancer.  Therefore, it is dubbed “autoimmune.”

What We Have Operated On

This is the assumption our past doctors have been operating on.  We are 2 years past onset, why take the time for this scan?  Well, Dr. James is little miss Johnny on the spot and she wants to completely take that thought out of our heads and hers.  I’m all for proactive, rule things out, kind of things.

In Lieu of the Scan

We came on down and went to eat.  After eating we headed to the Nashville Zoo.  It has been such nice weather.  We got his wagon and off we trekked through the other side of the bamboo shoots.

It was so nice.  When we got back, we couldn’t swim because we are trying to preserve his IV for tomorrow.  Instead, we ordered pizza, played, and watched a marathon of Chopped shows.

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Traveling Home From Florida

Part 1:  A Journey of HealingTraveling Home From Florida

Traveling Home From Florida.  We were driving for 13 or so hours.  This was a bizarre trip full of unexpected ups and downs.  Holistic treatment from a self-professed “quack” is quite the experience.

Our family is beyond thankful that we met that “quack.”  Also, that we took a chance to see what could happen if we stepped out on faith.  We allowed the Lord to dictate every move and His Name is glorified.

As a bonus, we saw the World’s Largest Cedar Bucket and the World’s Largest Peanut.

As an added bonus, I’m gonna see my sister.  Once I get home, I get to see my daughter and my animals.

It has been a trip that I do not believe I will ever forget.

Going Back

I believe we will try to go back every year.  It can’t hurt and it absolutely optimizes his health.  This year (2020) is a little strange because all traveling is banned due to co-vid19.  It makes me sad I can’t see my friends and go through this bizarre and amazing treatment again!

I just can’t speak enough of what a great experience this has been.  Honestly, I may try and save up so each of my family members can go through this treatment.  The first treatment takes 3 days.  Any other treatments (every year if you choose) is a one-day treatment.  Though, you can do another 3 days, if you would like.

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My Boy is WALKING

My Boy is WALKING

My Boy is WALKING

My Boy is WALKING after 3 intensive days of therapy.  I can’t even adequately verbalize my emotions.  Amazingly, I watched him stand up, by himself.  As a result, this was a moment I will never forget.  Then, because He is awesome, he RUNS to the ocean.  I’m so thankful that I caught that on my camera.  I got the best video and ironically, my camera attached a still shot.  Yes, it is framed, in my house.  Hunter, running to the ocean, carrying a stick.  Fearless, confident, and strong.  I’m amazed at God’s goodness.  We still have a long road to go.  Realistically, this is an unknown condition.  God has healed him…we are just waiting for the complete manifestation of that healing in his little body.

Let’s Just Absorb

My Boy is WALKING!!!!!!!!!!!  He is still shaky but he is out of that damned wheelchair.  Honestly, he does not even need the gait walker.  He gets tired easily but when he is up, he is running.  It is a miracle from God.  I know that he has already been healed by the stripes of Jesus.  Today, instead of hearing with my ears, I have seen with my eyes.

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