Friday, September 02, 2022

Puppy Keeps Eating Treat Bag

Molly, our new puppy, is a constant food seeker. No matter how much and how often she's fed, she's hunting for food. Sometimes this is a nutritional deficiency problem. For her it's an emotional psychological problem. Most likely due to neglect at birth and until she was rescued. 

The most frustrating struggle right now is she keeps finding the treat bag used for diaper time and eating the entire bag before we know it. She could down it in seconds. She's done it 3 times. This third time she pulled the diaper box off of the fireplace and dug out the cheerios I was using since she'd eaten the bag of treats the day before. And no matter how angry I get and her time outs, so far she's not able to control her urge. So, sadly, she's kennaled unless I'm in the room. She goes for toilet paper too. So she can't be free to wander. With so many people in the house I can't keep all of her temptations at bay. So, she's restricted. And of course she's upset about that. But sadly, she'll probably stop trying to bark. Because it won't be answered. Poor Girl! Her early trauma is so sad. I PRAY that she'll mature and accept that she has to resist her urge to purge;) 

Until then, I have to breathe and focus on all that we love about her and snuggle her as often as time allows. Puppy raising is as hard as raising a two year old. It's a huge commitment. But we didn't go into her adoption blindly. But I pray that she'll come out strong and happy. I'll have to research about more therapeutic ideas too.


Wednesday, August 31, 2022

Busy Times

So many big things are happening now and in the near future. I need to start blogging again! I need to be able to look back on these days. I really hope I can stick with this blogging thing again. 

Jakob's mission prep and now potential BYU application is the biggest thing on our minds. Always in the back of my mind. Even though there is SO MUCH happening on a day to day basis.

We have all 4 boys going to 4 different schools. Luckily, Jakob can drive himself. Luckily we were able to get a third car. But that's a stress financially. Which means Jakob needs to get a job. Which is a big stress. I hope we can help him follow through with that. None of us want him to work. It's very helpful to have him home. But financially he needs to work.

Most of my day is carpooling. And during the down time I'm caring for the dogs or catching my breath for a moment. Which means the housework is piling up. Always nagging and incredibly frustrating. I wish I had the guts and was humble enough to call in the church troops for help. But I'd like to think that I'm not the only one with this struggle. And that it wouldn't be fair for me to ask for help if they're in the same boat. ... but wowza could we use Audrey our past nanny right now!!!  Sad thing is, we couldn't pay help anyway. Really, I should be working. But that's not realistic. I've offered to do pet sitting. But I think we both know that that would br more stress then it's worth. Leif's just trying to work extra hours. Bless him!

I'm listening to the dogs play fight outside my door. They're a good distraction. But a stress too. Lot's of vet appointments. Thank Heavens for CareCredit that helps us spread the payments out.

Well, my few minutes to myself and rare moment to bath is up. It was nice while it lasted.

Wednesday, June 29, 2022

Written December 2018

Leif and Lena Baron Family
Christmas Update for 2018

Merry Christmas and Happy New Year to all of our Dear Friends and Family!!  We hope that this letter finds you well and happy. Our family is doing well! We've officially lived in California for one year now. Three months in Bakersfield and nine months in Huntington Beach.

Leif is working in Compton at MLK Community Hospital as a permanent float pool RN and is no longer a travel nurse. He enjoys the hospital and his co-workers. And they Love him! As a float pool nurse he is assigned to departments all over the hospital including the ER and the ICU. His latest evaluation was filled with praise and gratitude from the administration. Can't beat that! He is also finishing up his final year of his Masters Degree as a Family Nurse Practitioner. It's amazing to think that there's a light at the end of that tunnel. Leif and I finally convinced ourselves, and the ward leadership, that we will truly be staying here. Leading them to give us each a calling in the ward. Leif is serving in the primary and I am in the primary presidency as second counselor.  Leif is an amazing nurse. But he is an even better father and husband. He brings a life and light to our home that is hard to beat.

Lena, well, I'm doing well! I am happy. And I have all that I could ask for. I have a testimony of my Savior and His gospel. I have an amazing husband. I have seriously, Seriously, amazing children. Especially my sweet baby who is currently my constant companion. Which I know was absolutely meant to be for this time in my life. I live in a beautiful part of the country in a place close to the ocean, sunshine, and all of the conveniences of life that a mother could ask for. I am making good friends along the way. And keeping friends old and new from around the world. My cup runneth over, really. On the harder days I have plenty of good things to keep me from falling too deep, for too long into the dark. We have finally narrowed down the names and diagnosis' to my ailments. Which has been a lifelong journey up to this point.  And we are only steps away from getting control of a lot of the struggles I face daily. I feel very very grateful and blessed!!

Jakob. Jakob. Honestly, Jakob is the linchpin of the family right now. His mood and influence determines much of how the rest of the house feels. Gratefully, he is most often cheerful, helpful, silly, and uplifting. Wherever Jakob is, there will be music. He revolves around listening to, exploring, and creating music. All different genres :)  Jakob has full blown ADD. So this means that he is a constant multitasker. For example, right now he's listening to his current music, while playing or watching his favorite computer game of War Thunder (currently as a Fighter Pilot), all while juggling his baby brother. Really,  that's a small scale example for him. Most of the time he's flipping through several different random YouTube things he's researching at the moment. All while playing and listening to music. He's pretty impressive. His parkour, writing, and acting skills are equally impressive. He is now a Teacher in the Priesthood and takes this very seriously. Jakob has a "presence" about him. He makes a big impact on whatever, whoever, and where ever he is. I love to watch him interact with the kids at church and school. He's so unique. Yet, they all admire him. It's pretty fascinating to watch. Jakob has his health challenges too. Which we're finally able to address. His rheumatologist is the chief rheumatologist of the children's hospital and is a great doctor. Jakob's up against some challenges with Juvenile Arthritis. But he'll tackle them like a champ. Of that I have no doubt.

Caleb, what would we do without Caleb!? Caleb "shakes things up a bit", every day. 😁 He is showing so much progress in school. He's in the 4th grade and we love to watch his writing and spelling improve as he puts his mind to it daily. Caleb has a kind and tender heart. He really wants everyone around him to be their best self. Caleb still Loves WWII and military history, especially anything about tanks and tank battles. Caleb still battles Autism and ADHD. But he has mastered many “life skills” by now that have moved him forward in many ways. We are so proud of him and love every ounce of him and all that he is.

JJ, or rather, “Jonathan”, as he has chosen to go by at school; is as wonderful and complex as his full given name of Jonathan Jefferson Lee Baron. 😲 He was baptized this summer and his tender spirit and desire to do good reflects the commitment to Christ he made. He is doing great in school. And has made a lot of friends. Which means that he's finally able to go a week or more without talking about how much he misses Alton (his favorite place to live). πŸ˜‰ JJ Loves dinosaurs and hopes to be a paleontologist some day. JJ is a great brother. Especially with Joshua. He will read and play with him for hours. I also love to watch JJ and Caleb navigate their relationship. I often compare them to “two grumpy old men, sittin’ on a porch, tryin’ to outdo each other as they talk story.” πŸ˜‚ They know that if I start calling them “Frank” and “Bob”, that it's time for them to simmer down and make some peace. πŸ’“

Joshua. Our precious Little Caboose. I would be, and was, lost without him. I love all of my children! But each of them has had the season where they are “My Baby.” And this is his. Though, I have a feeling that his season might last just a little bit longer then the others did. ;) Joshua is what I call a “conflicted introvert”.  Much like his Papa, he can be the life of the party and yet be one who would rather hang back within his own thoughts and observations. He has a presence about him, much like Jakob. People are drawn to his warmth. Though his quick smile and strawberry blonde curls help him in this regard, i’m sure. He will jibber jabber to people, himself, the windows, and to his toys, all day long. Telling all of his favorite stories.
He LOVES HIS BROTHERS and will mimic their every word and action. Truthfully, the only real word that he says without hesitation and with full understanding is  “pray” .And he brings his two hands together in the sign of prayer. It shocked and tickled us when he surprised all of us one night at family prayer. Otherwise, there's a lot of testing of sounds and signs. But few true blue words. He says “mama”. But rarely with a purpose. Joshua is healthy for the most part. He's walking, eating, and doing all the cute things a 15 month old baby should. The only concern that still lingers from his rough and early birth is the possibility of some nerve or neurological damage with his right arm. It's very subtle. But he crawls on a fist and his arm gives out on him here and there. So we're meeting with a Pediatric Neurologist about that. He also has a problem with his right eye. It likes to wander outwards on occasion. So that will be fixed later. Once the muscles are grown more. So, all in all, for a baby who came out not breathing for a bit, we are So Very Grateful for the health and strength he is blessed with. And for the treasure that he has become within our family.

Thank you all for catching up with us! Please know that we Love you all and miss you and your company. Also, please remember that there are  ALWAYS Good Things To Come in this life! We must not give up! Please endure to the end, In Christ. For, we know with all of our hearts that He will carry us through all things.

With Love,
The L&L Baron Family

Written January 2022

I have been sick for my children's entire lives. Some of the time, like the present, I am really sick. The "barely get out of bed" kind of sick. When I'm deep in the pit, you better believe that I ponder the peace of Heaven often. But if you haven't walked my path before, you might think that it is reprieve from the illness that I long for. But the truth is, the peace I find my mind creeping towards is a release from the guilt and shame that weighs down my mother heart like a ball and chain trying to drag me to the depths of the ocean. The feeling of deep sadness at the things undone with my children because of my weaknesses. 

Do not feel pity for me. It is the last thing I need. My life is filled with so much goodness and love. And I'm way past expecting someone else to fix our problems.  I only share these very personal feelings simply to let someone who needs to know, that they are not alone in feeling such things. 

In my situation we may be surrounded by people and still feel desperately lonely. So what practical things do we do to keep ourselves from doing anything that would break our loved ones hearts?

Written November/December 2021

 months ago, I was finally able to foster a special needs "Road Dog" through the internationally known bulldog rescue Road Dogs and Rescues based in Southern California. Never did I think he would become our Forever Family Dog.

But, it didn't take long to realize that Stevie (A.K.A Zephyr Sage @roaddogsandrescue) is no ordinary Dog. He is a diaper dog. I usually change his diaper up to three times a day. He had been taught a routine, and he is incredibly patient during the whole process. He is a pleaser and is eager to learn and follow the rules. He has been amazing at his ability to be "nice" while wrestling around with Joshua. And one of the sweetest things is he has been a miracle for solving Caleb's sleep anxiety.

When we saw all that Stevie brought to the table, we had a family discussion. The question at hand was, "Do we REALLY want a Forever family dog? Up to this point, we have only had failed attempts at forever dogs and our Fosters. But Leif and I feel an absolute commitment together, never to have another failed attempt at a forever dog. So this was a very serious decision.

It was interesting to see and hear each family member process the question. Asking themselves whether or not they even enjoyed having dogs around. Or, were willing to consistently take care of the dog. If they wanted a dog forever, what kind of dog? A big dog? Little? Playful? Wise? A Diaper dog? Or one who requires a walk several times a day.

Leif: If the dog is beneficial for any of the kids' Special Needs then, Great! If not, then No.
Lena: If the dog is helpful, comforting, and easily taught, then Yes. And Definitely a Diaper dog.
Jakob: Is functionally allergic to dogs. So he prefers no dog. But if he had to have one he prefers a big smart dog.
Caleb: Wants to be sure that if we had a dog we could still foster. If he glad a dog he would want a playful dog. Stevie would be a great forever dog.
JJ: Doesn't NEED a dog. Because he just got a guinea pig. So he's paying attention to him.
Joshua: Would love a dog. Loves Stevie.
We also talked about some of the reasons that we each didn't like about dogs: Pottying requirements/insistent on stopping to go out. Barking. Not smart/or obedient. Hard to go on vacations. 

So the family concencess was an overall feeling of; if the stars align with our needs, we would enjoy having a Forever Family Dog. We ended 

Written in March/April 2022

Today I had a big cry and a beautiful walk down memory lane. The photos from my mission have been in storage for the last two decades. Leif and I finally pulled them out so we can share them with our boys and start good conversations about mission life and teaching the gospel. 

As I started going through my photos I was overwhelmed with sorrow and anger. My dearest mission companion, Fai' Ana Fotofili died from pneumonia five years ago. We served more then half of my mission together. After I married and started having babies I kind of lost my brain and let my contact with FaiAna become way too infrequent. When I found out that FaiAna passed I was absolutely Devestated! 

FaiAna was my trainer. She had the most incredible laugh. And an amazing sense of humor. 

Written in May 2022

I've learned some things about myself recently. First, I have built walls around myself in order to keep me from crying and/or feeling deep emotion. This means that for many, many, years I have not consistently listened to music that would invoke the Spirit to touch me, talk to me, and most likely cause tears to flow. In my previous lives ( not reallyπŸ˜‰) I mean in my earlier years, listening to music that brought me to the comfort of my Savior was an every day thing. Just a part of me. 

Why is this? And what have the consequences been? Well, I think the biggest reason is that I have not dared to evoke too much emotion. For fear that I would spiral and not be able to contain it. And Heaven knows I already battle spiraling out of control. Why encourage it? Right. No, I know that's a very unhealthy mindset. But survival mode causes us to do what we feel has to be done. Just to keep the boat afloat. I think the consequence has been a sense of loneliness. Living in a house full of males who all feel emotions in a completely different way then I do can feel isolating as it is. But to then never show them raw sad emotions?... it's just not a healthy way to live.

For many years we almost bragged about Leif's ability to compartmentalize. Split himself into pieces and be who he needed to be, where ever he was at the time. A.K.A. block out certain things in order to keep all of the boats afloat. And he did it very well.
Yeah, that type of coping strategy is a really bad idea that bites you back too.

Now that we are all living a more normal, stable lifestyle, we are being faced with problems that have been festering and only barely tended to. I think we have a new journey in front of us. I don't think it's going to be comfortable. I wonder how it will play out. 

*Have no fear as you read this. Our marriage is secure. That's not where this is leading.*

I'm talking about facing mountains in our lives that we haven't faced completely yet. Basically, there is a monumental mountain in our life together titled the year 2006 that has only grown into different mountains with different trails. That have led to other trails. 

For so many years we have been digging our way forward to get to where we are today with Leif's schooling and career. It has given us the perfect excuse to just buck up, take a pill, or just ignore it, and move for

Wednesday, May 11, 2022

I had a conversation with my son Caleb today. Caleb has high functioning Autism, ADHD and Anxiety. One of his biggest struggles is to find the words to explain something, let alone getting the words to come out of his mouth making sense.

For a couple of months or more whenever I've asked him how school went he would tell me little things about the drama or sadly, the bullying. But he's also been saying that during the day some things, in his words, "... feel so confused." I've tried to figure out what he means by "confused." Especially since he's been able to get across that there's a spiritual element involved in the confusion. 

Today I found myself able to take on the question and try to understand what in the world was happening inside of him. 

I was able to get from him that the confusion dealt with thoughts and feelings. So with that I tried to figure out if he was dealing with "Intrusive Thoughts." A term used in the psychology world to explain a symptom that often occurs when your body is dealing with a chemical imbalance or other mental health issues. These thoughts will suddenly intrude without warning. Usually extremely negative thoughts or memories, and some people will even hear what seems like a voice(s) telling them random things. He was able to tell me that that was not what he was experiencing. I was grateful. But we still needed to dig further. 

Next, I talked to him about another psychology term called "Flooding." I shared with him that this is actually something that I've experienced for years as a symptom of anxiety. And I have gradually come to realize it for what it is. I explained to him that sometimes I'll randomly remember something, usually a conversation or interaction with  a person that I regret or am embarrassed about. Something that roots in me feeling inferior. I'll have a flood of emotion that quickly comes; rolls through, and for me the words Angry - Sad - Mad - actually sound off in my mind. And then the moment will roll away until the next time. Unresolved but not weighing heavily for very long. He said he could definitely relate to that experience. But that wasn't the "confusion" that we were trying to put words to.

I wish I could remember exactly how it happened, and what he said. But finally as we talked, Caleb was able to say the words he needed to say to help us figure things out. He said that it's not really a chaotic feeling. But happens more when he has choices to make throughout the day.  That he is overwhelmed with confusion on what he should do. What the Right choice is. He said that he couldn't figure out what was his thoughts vs. the Holy Ghost.

I was so thrilled that finally his tongue was loosed and his mind cleared enough to be able to put words to his "confusion." 

The first thing I did was ask him to give me an example. He told me that today he had to quickly make the decision whether to go out and play soccer or to go to the Wellness Center to relax and check on a friend. He chose to go play soccer and ended up getting a ball thrown at his back. Sadly, something that has happened in the past. 

Now for the lesson: He and I named it "The Tool Belt" analogy.  The first thing I cleared up and helped him understand was that the Holy Ghost isn't going to tell you what to eat for breakfast. Meaning, God wants us to learn to make our own decisions. Next, I gave him a formula to follow to help him make decisions. Something to put in his tool belt to help during the day.  Mind you, people with autism often need a plan. A rule to follow. I told him to pull from past experiences as often as possible. So, with soccer, he can think back and ask himself what percentage of the time he Loves playing soccer at school. How often does he feel light, joy, and illumination while playing. Then compare that answer with the opposite choice. And obviously, the best decision is to Choose Light. Because Light is from God. 

This conversation seems so simple as I read over what I've written. It proves how hard it is for kids with special needs to make sense of this crazy world. And also, how hard it is for us to help these precious ones to reach their potential. I'm so grateful for the gospel of Jesus Christ that gives me a foundation to pull from as I try to guide my children. I would feel so lost without Him. ☀️

Friday, April 22, 2022

Today, I'm Grateful to say that my doctor was kind when I requested a prescription of Lamictal for Bipolar II Disorder. I was worried that he would make me wait until Psych could get me in. But instead, he asked for a clarification of my diagnosis from the past and my past and present symptoms of the disorder. He then confirmed with Psych that he could write the script and that I would follow up as soon as they can get me in. 

I knelt down today, and prayed to my Father in Heaven that this medication and other services that Psych can offer will be life changing for me and for my family.  I pled for His blessing on my desire to care for my family  steadily. Without bad days, weeks, or months breaking up any progress that is made.

I know that He hears my prayers and will do what is best. And that He is with us come what may. But I do have a good feeling about the future. 

Thursday, April 14, 2022

Psych Help In California

Did you know that during the 3 years of living in California that I have been turned down for psych services at least 6 times! SIX Times!!! If I were suicidal, I would be dead right now. And I wish that was a joke. It's far from a joking matter! 

I have reached out all of these different times so that I could get a prescription for the proper medication and possibly some counseling. Or even better, a series of EMDR treatments. 

Why have I been turned away, you ask? Because my case is too complicated for their "specialized services." In other words, the doctors have deliberately chosen to go the easy route in psych services. My case requires navigating through medical issues as well as psych issues. 

It blows me away that in a field so vital, it is By Far the hardest field in the medical world to navigate. In the first place, multiple phone calls are required to even begin the process of getting help. And that right there folks, is a HUGE issue for someone with fragile mental health. Making a phone call that actually requires you to speak to a person AND answer questions sensibly, is comparable to trying to eat an elephant. It's pretty much impossible.

And the couple of times I gathered my strength and follow through to sign up online for online therapy, I was denied service because my case is too complicated. 

Have no fear for me though, my story is about to get better, I hope!! I made the two different phone calls through our insurance to get an appointment, assured them that yes, indeed our guns are locked up. And no, I am not feeling suicidal or homicidal. And finally, it was arranged for me to have an Evaluation appointment in TWELVE DAYS from now. Lol! 🀣🀣🀣 Do you know what can evolve in two weeks time when someone's mental health is in a fluid state. A Lot can happen. But, again, all will be well. I'm pretty accustomed to riding these waves. "Baby Steps." "Baby Steps." πŸ˜‰πŸ˜‰πŸ˜‰ #whataboutbobjoke

Sunday, April 10, 2022

Pray for our future leadership

Today I watched the first episode of the documentary series called WWII IN COLOR ROAD TO VICTORY. As I listened to the story of Winston Churchill and the miracle of Dunkirk, my mind naturally reflected on the current war. Which I believe is only the beginning of a greater war. 

First, I reflected on the current troop numbers in the current war. And the total casualties up to now. Not to demean them in any way; but the number of troops gathered at Dunkirk and the number of casualties they had up to that point is unfathomable to us in this generation. We're talking, half a MILLION troops, killed in only the beginning of the war. That is something I pray that we won't have face again.

The next thing that came to me was the two types of leadership that were working on laying out a plan that they each thought was the right path. Halifax, ready to surrender and have "peace talks" which very likely would not ultimately bring peace to the lives of the Britain's. And then Churchhill, the believer and the Never Surrender leader who inspired the nation to press forward to Victory. 

We have two years until the United States holds their next presidential election. My overwhelming feeling is that our nation needs to become united in prayer in preparation for that election. Not praying for a certain person or party. But specifically praying that through the inspired election process and the freedom for the people to choose, simply pray that God will place to leader whose destiny it is to lead our country with honor, intelligence, wisdom gained through experience, courage, and determination.

Friday, April 08, 2022

I Pray

I turned off the news for a couple of weeks. The pain and heaviness that I felt for the children of Ukraine was too heavy and I could do Nothing but pray for them. I literally had to pray to Father to sever the cord of feeling and empathy I was feeling. So that I could find some peace and step away for a while. He absolutely did that for me. It was a clear difference. Although I did have several dreams about children I was searching for. Trains. Mass destruction and fast and furious retreats. So obviously I still feel something. 

This week Russia pulled out of the North cities that they were devastating for the last month. They're regrouping and going to move to the East. They couldn't take Kiev like they'd hoped. But the absolute horror of what they left behind in the towns is as powerful and as barbaric as the atrocities done during WWII. We're talking executions, mass graves, and the unimaginable; mobile crematorium.

Today the Russian's fired a missile into a train station in the East where people were trying to evaluate before being invaded. Why they've waited until now? Leif and I wonder.πŸ€” Honestly, today's attack could have been so much worse! I pray none of the trains are taken out. 

My brother Jason has a long distance girlfriend who lives in Odesa in the South. CNN just said that today there were three attacks there. The beginning in that area. I wonder how she and her family are...?

It's all a horrible feeling of helplessness. Not being part of the leadership who make the decisions on how to help. Or, IF to help. It's a horrible feeling. 

I ask myself and God what I can do to help.  The impression I get is that there will be a time in the future when I might be able to physically help. But for now, my charge is to build strong men who can go out and succeed despite the world chaos that they will undoubtedly face. Let alone the fact that they will also have a family to care for. I pray now for their future wife's. I pray that they are being prepared and taught how to remain strong through mighty storms. ... I Pray.

Thursday, March 31, 2022

24 Months Since the Pandemic Began

This is a well done consolidation of the story within the Pandemic. There is A Lot more that isn't it it. But they did a good job catching a glimps.

24 Months That Changed The World 20/20 Special

Tuesday, February 01, 2022

Looking Back and Forth at History

Lately I've been thinking a lot about history. Personal history, world history, family history. And I've determined that, in fact, hindsight is 20/20. 

We've pulled out our Save boxes that were stored in MO for the last ten years. Pulling out things I haven't looked at in decades. My grandma's recipe drawer that I took when she died. My many many journals and photo albums from my childhood and youth. Mission photos. ( I haven't pulled out mission journals yet.) But the experience has been eye opening. A remembrance. A lesson about myself and some weaknesses I still carry with me to this day. And a reminder of how deeply and personally I lived with the Spirit when I was young. 
I'm going to figure out a way the fix some of my weaknesses. 

The Russian president, Putin, is stiring things up in the east again. He did this in 2014. Lined up along the border of Russia and Ukraine, pumping his chest. Invading just enough to take back a portion of Ukraine that he really wanted. He got everyone in the world riled up and on alert for war for months. And then slowly let it all fizzle out.
And he's doing it all again. Except he hasn't invaded at all. And at this point he's trying to manipulate the event into a West caused "confusion." While Ukraine's leaders are trying desperately to downplay the entire thing because they don't want an uprising panic. In their words, they're far from grateful for the West and NATO taking this seriously and preparing to help. I wish we could ignore it. But a move like that from superpower Russia can't be ignored or it will just pick up steam. I wonder what history will tell about this.

Meanwhile, China is itching for war with Taiwan. I think they'd welcome the distraction of a war in Europe to help them make a move. The fact that the U.S. Navy had a Terrible mishap with one of our most sophisticated jets and accidentally flipped it into China waters.🀦‍♀️

It's all a Perfect Storm for war.

Although, we've got our own mess here on our own soil. So Much Division! And so much crime because the law makers supported some stupidity that allows thousands of convicted felons back on to our streets and lightened the sentence of Petty crime. So we've got mayham on our streets and in our stores. Even the trains are being robbed. It's madness. 

And all while trying to handle this seemingly endless pandemic. And an endless Trump investigation of all of his Stupidity. Politicians desperately scrambling to convict him of enough that he will be uneligable to ever run for president again. 

History will be 20/20

Wednesday, January 19, 2022

Time For Battle Against Neuro Behcet's

September 1, 2021 I woke up feeling terrible. Body aches, throat ulcers, itching at my shingles scar, and I had hives. Most likely I had a fever as well. But I don't recall my temperature. 

I remember being surprised and baffled by how quickly the flare came on. I hadn't been sick like this since July 10, 2020. So almost a year. During the July flare I had colitis and required IV Fluids and prednisone. The prednisone must have done the trick. Because I don't recall the flare lasting excessively long. 

So, in September when I flared we had just moved into a new home and a new area. So my Rheumatologist and physician was in Southern CA and I was in the North. At that point, if I were in my right mind I should have called my Rheumi immediately and gotten prednisone. But I wasn't in my right mind. And Leif was only home half of the days of the week as he worked in San Francisco. And commuted home on his days off. With this flare I was instantly non functionally exhausted. Everything that was in progress was halted drastically. The fact that I returned the litter of puppies I was fostering shows the extent of my fatigue. 

I must have finally taken some prednisone mid September because although I was still exhausted, I took on more puppies and even kittens. But that didn't last long. And then on October 25th I took on Stevie our foster puppy who requires diapers. Although he added work. He gave back and we fell in love with him. He was a good motivator to pull me out of bed. Along with my 4 year old who is still in diapers (only because I have ZERO ability to consistently potty train.) 

So October continued with severe fatigue and mental fog and cognitive decline. And by then I'm pretty sure I was back to cussing (I know I am now). Which happens with Neuro flare ups. And on November 5th and 6th I facebook about Severe headaches. I remember that I'm pretty sure I threw up at that time too they were so bad and finally I took sumatriptan and packed my head with ice. The rest of the month is a blur. By then depression and cutting were definitely on board. The feeling that I was useless. So sick! I'm estimating that this is when I really started noticing CNS symptoms. Muscle twitches, warm spots (feels like a lighter up to your skin), and my knees and thighs started to tremble as I walked down the stairs. November and December I also battled terrible water retention in my arms and hands. Especially in the mornings. I finally took some prescription diuretic I had from the past. Looks like that's happening here in January too. Probably hormonal. 

In December I started feeling abdominal tremors. Something I have never felt before. A sensation like the muscles and everything inside is vibrating. No pain. Just incredibly strange and annoying. The Christmas season lightened the depression. But the CNS symptoms and cognitive decline came front and center. Also muscle twitch/rolling in the tummy. I honestly wondered if I was miraculously pregnant. Of course I wasn't. Another symptom that was an issue in December was jaw jerking. It's happened in the past too. 

In December I got really sick from an infection. Probably covid. Though the test said it was negative. During the two weeks I was sick I had Horrible nerve pain in my teeth and jaw. We concluded it wasn't congestion because it randomly affected different parts of my mouth. Including the lower jaw so bad I though I'd broke a tooth. The catch is, many of my teeth are fake and bridged. So it felt like phantom pains in my mouth. Extremely strange and painful.

So now it's mid January. And all of these symptoms and more are happening on practically a daily basis. So I am desperate and starting to get Leif nervous. He didn't like seeing my legs shake as I walked down the stairs. And he Really didn't like me talking about Multiple Sclerosis. So, for the last month or so Leif has been prepping for a new job. So we have held off on medical procedures because of that. As well as covid nonsense. But finally I had a clear enough brain to start researching the differences between Behcet's and MS. Because with all of the CNS symptoms we thought I might have MS and that the protocol for MS was different then just prednisone. But I found a study done comparing the two diseases and it is very very likely tht this is just an extension into neuro behcet's from the typical Behcet's that I've already been diagnosed with. And we found another study laying out the treatment plan for neuro behcets. And the first line of defense is always prednisone. So it WAY PAST TIME to start this battle. But here we are. Luckily I have a months worth of pills from my sweet boys who don't use them regularly. So 20mg a day until we see serious improvement and then taper. In the meantime get an MRI. and new doctors. 


Wednesday, January 12, 2022


Last night I lay thinking about the current #10yearchallenge. All that happened in the past 10 years. But then it hit me. All of the monumental things that are hoped for in the upcoming 10 years. I'll be the first to tell anyone that nothing planned, is sure. But we can work for it and hope, until it becomes an experience and memories. 

In the next ten years all of the milestones are those that have been planned for, taught about, saved for, worked towards, and hoped for; forever. Since the beginning of our family.

In the next ten years we can hope that I can get Joshua potty trained and sleeping through the night in his own bed.πŸ˜† 

Seriously though, in the next ten years there is potential for three high school graduations. Three temple endowments. Three missionaries. Three returned missionaries. Three college students. There's even the potential for three weddings.

Leif has potential for multiple promotions and job milestones. In ten years Joshua should be baptized, ordained a deacon and a teacher. And will be preparing for high school. And me, well, I'll be walking along side each of these amazing people cheering them on as they reach their incredible potentials. Making sure their shirts aren't inside-out.πŸ˜‰πŸ’—πŸ’— And then there's Stevie. He has the potential of gaining 20 pounds and becoming a rotund couch potato. Let's hope none of us have that same potential within these next ten years.🀣
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