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. 

LET'S DO THIS! 

#inthenext10years

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.😆 

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.😉💗💗 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.🤣

It's only a matter of time and technicalities before I get the diagnosis of Multiple Sclerosis. I'll be pretty surprised if I don't. For the last few days and nights the nerve pain in my teeth has been really bad!. We thought it was the cold I have. But that doesn't make sense with where the pain is. But I'm too weak to hold this and type. But the tremors in my abdomen have us scratching our heads inquisitive too. 

Quietly. Secretly. Very. Very. Broken.

I just took one of those silly online quizzes that "tell you" who you are according to your choices. Let's just say that this one was pretty spot on. I'm not talking about the fluff n stuff "you're lucky if she loves you" I mean the "silence means danger..." and "don't take advantage of her kindness..." and "because once you break her trust she's ready to walk away..."

Yeah, pretty much spot on. And so descriptive of how I'm feeling right now. I feel like I'm the lead in a silent film. Like life is happening. There's a story. But no sound. No dialog. And filmed with a sepia filter touched up with beautiful fall colors mingled in. 

In fact, I'm so tired and worn down that I can't even get myself to write out all that is happening and how I'm feeling. Especially, because I don't even feel the presence of a writing audience. No one to have a dialog with. No one to write to. At this moment anyway. ... years down the road someone might read this and wonder.  But not right now.

It's times like this when it's nice that very few people read my blog anymore. That I know of anyway. Because I can share some of my deeper thoughts for the record. But it won't be up for conversation in the moment. 

This weekend was General Conference. I love this weekend. My kids are respectful about watching Conference. And Leif had the weekend off. So all of that was HUGE in making it a successful experience. 

It was chaotic throughout every session. Between Joshua, Caleb, and puppies. It was far from reverent. But that wasn't surprising. But what was surprising was ME. My inner thoughts and feelings. 

Because I battle chemical imbalance and mental illness its often hard to determine what is truly coming from my heart and spirit or mental illness. Let alone clarifying what might be a prompting from the Holy Ghost. 

Gratefully, throughout the progression of sessions I found myself feeling better and better and genuinely feeling the spirit. But looking back, I had three reoccurring things that I processed through over and over and over. First, bitterness/disappointment. Second, fear/pleading that I wouldn't be tasked with facing a monumental loss/grief again. And third, concern and thoughts about my friends, the ...

It took a little while for me to figure out that I was feeling bitter. When we moved here I knew that we would get callings. I was somewhat expecting a calling that would stretch me. But I felt strongly that whatever calling I was given I would be given the strength to serve. From my experience also, whoever I am serving with becomes my circle of friends and network. So when I was asked to be the Humanitarian Service representative for our ward (which isn't a calling where you're set apart) I thought maybe I'd still be given a calling in addition to that. But I guess not. I completely understand why. I can barely keep this responsibility afloat. But I'm really disappointed. Mostly, because it means that I serve by myself and I don't really have a circle. I'm feeling Really lonely. And I think I'm getting bitter and jealous of everyone else's health and strength to serve. But honestly, these feelings just stem from my lack of effort to invite the Spirit into my daily life. 

The second reoccurring feeling I had this weekend was FEAR! Dread? PLEADING! Every time the topic of overcoming trials through the power of the Atonement came up I felt these feelings. I felt 100% sure knowledge that what they were teaching was true. From experience. But whether it's the Spirit preparing me, or mental illness inflicting me with anxiety and PTSD, the feelings are overwhelming. The thought of facing the physical and emotional trauma of loss and grief again; is terrifying!! I feel like I'm barely surviving right now. So the thought and possibilities brings back memories. And I feel like I'm screaming inside, pleading... 

When it comes to the .... ; I have no idea why they popped into my mind. I felt overwhelmed by the thoughts. It's totally bizarre when it happens. And at this point, it's REALLY frustrating. Because I have absolutely No Idea why my spirit has such a connection to them. I mean, I love them and have fond memories with them from my mission. But I have no idea why my spirit refuses to let them move into the background of my story like so many other dear friends I've had along the way. ... when these times come I find myself filled with thoughts and feelings and prayers. Most of the time I reach out. And only on a couple of occasions they have shared reasons why maybe I was prompted to pray for them. Otherwise, I actually think it wierds them out. Which I totally understand. 🤔🤷‍♀️ I have other people who I have this type of connection with. But the connection makes more sense and is somewhat more reciprocated. *sigh*. Again, it just shows that my mind and heart is feeling pretty overwhelmed at the moment. 

And then I forgot that Leif had to go back to work tonight. I'm feeling more and more that we need to get Leif working closer to home. I'm sick of the compartmentalizing that happens to survive this lifestyle. It's not healthy. 

Time To Ask For Help

Well, we've come to a point now in our new home in Auburn, CA that it's time to call in reinforcements. I battle chronic fatigue on a daily basis. But I also have an auto inflammatory disease called Behcet's. The Behcet's has been under control for over a year. But it flared up a couple of weeks ago. We had a nanny in our last home and I think that made all the difference. It's time to find help here in our new home.

Previously our nanny did a 50/50 amount of child care and cleaning. Currently, I think we don't need as much childcare as we need help keeping our house put together and clean. Very sadly, when I am extra sick I am only able to use my strength on giving quality time to my family. This means the house can get very messy, quickly. Even if the boys do their chores. 

I need someone to come over two or three times each week. The first couple of weeks will probably be more involved as there is build up of piles and things to be done. But as time goes on and a routine is followed it will probably become less involved and more of maintaining. As for particular duties; I need help with keeping the living areas organized, clean, and tidy. So the living room, kitchen/dining, all floors, and 1 &1/2 bathrooms. I definitely could use help with folding clean laundry too.

On a few occasions in the month we might ask our Helper to watch Joshua, our 4 year old, so we can go out. 

Whoever comes to help will need to be comfortable and confident enough to go about their duties along side the household and its happenings. Someone who is experienced and able to see what needs to be done and do it without being asked. 

This person will need to be understanding and not prone to judgment or criticism. Someone who understands that I am rationing my strength rather then being a lazy mother. 

I have been sick for my children's whole lives. So they are all accustomed to our lifestyle. Because of this, we are ALL incredibly grateful for any help at all that we get to keep things together. 

When it comes to days and hours, all of that is flexible. The best timeframe would be any times between 9AM and 4PM. We pay $20.00 per/hrs up to 10 hrs per/week. 

Any days other then Sunday are open. Leif works as a Contract Nurse Manager in San Leandro (by San Francisco) and is only home about 3 or 4 days out of the week. Which is another reason why help is so appreciated. 

If our House Helper is interested, we have extra projects that we need help with around the house. Such as helping the boys organize their new rooms and put things where they belong. All the way to Large projects that will most likely require a few people. Such as organizing the garage and taking Thrift items to the Thrift store. These pro

We don't have any pets of our own. But whoever helps us will need to be able to be around kittens, puppies, cats, and dogs, as we foster them for local rescues and often have a pen or two of babies. Our Helper won't be expected to help with their upkeep. But they are welcome to hold them and play if they want to. 

We will sign a work agreement with our Helper for a 3 month timeframe (the same length as Leif's contracts.) At the end of each contract we will all reevaluate how things are going and whether or not the agreement will continue.  We are able to pay our Helper through a Pay Roll company or Cash. Whatever they prefer. If after reading this you're interested in this position, let me know and we'll set up a home visit.

Always Remember: Revenge Is Unsatiable. Choose Justice.

Always Remember that Revenge is a thirst that can never be satisfied. Choose to allow Justice to fulfill the law of consequences. 

Always Remember: Love, Even Though

Always Remember  to Love those people you have relationships with, or come in contact with, Even Though... 

Love the person who eats the last treasured donut in the box, even though they are obese, and even though they live a sedentary lifestyle, and even though their behavior is self sabotage. Love The Even Though! 

Love the person even though they use their gifted money to buy cigarettes and drugs. Remember that HE Loves Them, Even Though...

It has been a Really great 5 days, going on 6. We picked up our first litter of Foster Puppies on Saturday. Then added one more on Monday. It has been so much work (expectedly). Sadly though, our time with them is coming to a unexpected close.😭 I woke up a handful of days ago with a little bit of body aches and an itch in the spot where I had shingles a couple of years ago. I've medicated and it has been pretty much forgotten up to this morning. I woke up with sores in my throat and then I got hives 😱🤔 Sooo, rather then separating siblings in order to lighten my foster load, I'm going to pause a bit to get things back on track. Huge Bummer!! But I'm confident that we'll get things squared away soon and be back to the babies again soon

I didn't mention this when I was asked a month ago. But I was asked to be the Humanitarian Service Rep for our ward. Fast forward to this moment....  ummm, I'm feeling speechless at the amount of needs we're currently surrounded by right now. Both on our door step, and then throughout the world. ... It will be interesting to see why I have been called to this right now... what roads I will be directed towards to lead and give service in....

#deepthoughts

Was it worth it?

Up to this point I've only allowed myself to feel the surface feelings. The shock and horror as I've watched the news show the fall of Afghanistan. 

But now I'm crying. I stopped and reached out to a friend. A veteran of the military. Someone who I sat with on the lawn of the Navy Training Center in Chicago on September 11, 2001 and the days following. My missionary companions and I were the only civilians allowed on to the base that day. It was a miracle. The first of many. Earlier we had walked the sidewalks of the base and God had literally led us to the location of each of our Sailors. We knew that all of their lives had just changed forever. So had ours. They were now facing war. Some of them would eventually change to a different branch of the military and be sent to the front of the action. That was only the first day.

I've lost touch with almost all of the hundreds of Sailors I knew and loved deeply. It's been 20 years since then.

Over those years on occasion I've been overwhelmed with the question of who may not have made it through the combat. And it was heart wrenching to wonder. Even worse was watching those I still know; come back broken and in so much pain. The pain of losing their buddies being the hardest of their pain. 

And now to watch these events. And have to confront the feeling again of the darkest of questions; was it worth the sacrifice?

I sit here and ask myself. Dig really deep. Trying to find the spiritual wisdom inside me. 

Yes. If I think back and picture each face of my sailors. And remember the feeling of honor, courage, and commitment (sorry for the cliche, guys) that they each radiated during those early days. I have to believe that they as individuals were ready and willing to make the sacrifice. ... but the pain that was left behind in their place. ... was it worth it? With this question, I can only do one thing. Fall back on my belief that some rewards aren't felt until after this life. I have to lean on the hope that comes in my faith in God. That He will judge our actions and choices here on earth, against our circumstances. And theirs against the sacrifice they made for their fellow men and women. And I believe their reward will be magnificent. 

But how do we face the future sacrifices, knowing that 20 years down the road they may be erased. My answer, The One. When I talk to my boys tonight about what's happening. I am going to teach them about the principle of "The One." When we go forth to serve, we must follow our Savior's example and focus on the one person we can serve. And do this again, and again, and again, as we serve. Because during this life on earth, there is a beginning and an end. And as we're seeing with Afghanistan, the end is not always pretty or validating. But if we focus on The One; the individuals who were protected and freed during the 20 years, then we can fathom the possibility that all the sacrifice was in deed worth it.