A glimps inside my insomniac brain...

     I haven't written in awhile. No, that's not true. I haven't posted any of my writings in awhile, mostly because once I post it, it will be true because it's out there on the interwebz for everyone to read.

Bonjour

     On the many nights when I lay in bed awake my mind ponders. I ponder my beliefs, and how they are similar to those around me, yet the polar opposite of others. I think about society, and the world in which my children are growing up, compared to the one where I grew up. I ponder the shape of my face and my high cheek bones, the lines that have developed on my forehead from all the pondering. Hey don't laugh at the randomness, it's my brain.
     Yet every time I sit down to write all that comes out is the complaining. I don't want that to be what comes out of me. There are things in this life that are difficult, but it could always be so much worse. When I am whining about the pain in my legs I should be so grateful that I can still feel them, because some day I may not be able to feel anything or be able to use them at all.
     These thoughts swirl around and around. Pinging off of one another. They are there as I am awake at night. Not that I am worried about these things, they are just thoughts that are there as I can not sleep.

 

     Well since I'm awake and it's about one in the morning, I'll go ahead and tackle all of these brilliant questions that are circling around like buzzards tonight. We'll see how brilliant they are once I've had some time to sleep. You know how ideas always sound so magical as you are falling asleep? That will be the following 5 pages…

     1. When it comes to my beliefs why am I right and you are wrong? Well because I just am. I don't want to debate  about who is right and who is wrong. But be sure that I am not going to try to force anyone to believe exactly how I do, and I appreciate it when this is reciprocated. We, as human beings, are all unique and wonderfully made. We all have opinions, just like that other body part, and we are all allowed to have them {opinions, not the other body part, although you kind of need that…}

     2. Am I willing to listen to others about their view point? Yep. That is what I am good at. I listen, and then listen and then listen some more. Sometimes I will respond but mostly I will listen and only speak when asked a question. Or I will ask a question to get further clarification, but for the most part I will just listen. I try to always think before speaking, but being human, I often fail at the perfection that I strive for. So, if someone has a view that differs from my own, I will listen. I will take what is said and chew on it like cud. (Hey! I just called myself a cow)

     3. How do I educate myself enough to defend my viewpoint? Well, I don't believe that I can ever be educated enough to know with full certainty that my way is the only way. Come on, I'm not a dictator after all; well maybe in my house, but not with everyone else. My deeply held core beliefs are based on hours of study and intimate relationship with the topics. If it isn't important to me, I'm not going to give it my valuable time. Even this time 1:07AM if you are keeping track. I am a Christian. 100% sure on this one, never going to change my mind. I am a "Conservative." I believe in the value of human life, all life was created for a purpose. I believe in working hard and earning a living. I believe in helping those that can't help themselves only until they are capable of helping themselves again, and not enabling bad behaviors. I believe in the value of an excellent education. Although a free education would be great on the wallet, it would cheapen the meaning of having a college degree. What is a High School Diploma worth these days? I believe that Truth and Justice should always prevail, I'm not a big fan of grey unless it's a light shade of paint on the wall. You either lied or you didn't, you sped or you didn't, you cheated or you didn't. There is no kind of broke the law, you either did or you didn't. I believe in the sanctity of marriage, that people shouldn't get divorced and that they should fight like hell to protect their marriage. But mostly I believe in GOD'S LOVE and GOD'S GRACE. You can't argue with either of those, because they are given to all freely. And if my opinion is different than someone else, I still LOVE them, and will only show love.

     4. Because I don't agree with someone 100% does that make me their enemy who is worthy to be called names like bigot, extremist, whacko, etc.? No! Although I have never been called these names, I have been called names that were more in line with the assumptions people make about "the quiet ones." But as you can see, my brain isn't so quiet. When I disagree with someone my first response is not to lash out, either in person or on the interwebz.

Again, no I am not perfect and am not trying to say that I am.

 I am really sensitive and get deeply upset by the things that I read on line. I always say to my self "Self, DO NOT EVER, EVER read the comments section of an article, you will only get upset."
 

     But do I listen to self? No, of course I don't. People can say/type the most revolting, thoughtless, uncouth, ignorant, evil, vile, reprehensible, things. How does having a different opinion than someone qualify the verbal attacks, and sometimes even death threats? Do the people that use these terms even know what they mean?

Bigot: a person who is obstinately or intolerantly devoted to his or her own opinions and prejudices; especially : one who regards or treats the members of a group with hatred and intolerance.

Intolerance: unwillingness to accept views, beliefs, or behavior that differ from one's own.

Hatred: loathe, execrate; despise. Hate, abhor, detest, abominate imply feeling intense dislike or aversion toward something. Hate, the simple and general word, suggests passionate dislike and a feeling of enmity.

Extremist: A person who holds extreme political or religious views, especially one who advocates illegal, violent, or other extreme action.

     {would expecting me to jump on the opposite bandwagon also qualify here as bigotry, intolerance, hatred and extremism against my point of view? Yes, I think so. And, I feel I must be clear, as a Christian and a Conservative; I do not treat any group of people with hate, I do not have a feeling of intense dislike or aversion toward any people and I absolutely do not advocate illegal, violent or any other extreme act.}
 

     5. I home school my girls, does that make me think I'm a better parent or that my kids are smarter? No not at all. This is what works best for my family. I think each family needs to find a dynamic that works best for them. I have a debilitating disease that keeps me up at night and makes waking up before 9AM extremely difficult. I will do it if I have to, but I won't be happy about it. And neither will my teenagers. I have noticed that each one of my girls have different needs. #1 and 4 most likely inherited some dyslexia and failure to spell adequately abilities from me. (But isn't that why some really smart people invented spell check?) #2 can finish 6 subjects in 3 hours with 99% accuracy, she was so bored in public school. #3 needs verbal, written, demonstrations and reiteration, for her instruction and can take hours to do 1 simple page of school work. And she would be constantly in trouble for "squirrel." So it all boils down to, the fact that they all need a little extra. Whether it's help with focus, there went another "squirrel," getting harder work instead of extra busy work, or teaching the difference between a cursive E and a 3 or a P and a 9. They will all be great some day, right now they are each on the path especially made for them.

     6. Am I qualified to teach? I can't even spell, ~Again some genius created spell check!~  But I sure love math, and science, and reading and art and home economics, and economics, and history, and teaching and PE is awesome! So, here's the deal-e-o yo, I'm not a certified teacher, but I have been gifted as a teacher. I have come to this role kicking and screaming and begging for a different talent! Alas, it is what I do pretty well. I am sure that it helps that I love the topics. It is fun to teach the things you know! But my favorite part of teaching has truly been the learning. What I had no clue how to do, or things I memorized for the test (and then promptly dumped so I would have more memory space), I have now learned. I have had to learn something well enough that I can teach it. I am a firm believer in the ability of humans.

God made us in his image, and He is a

pretty smart and talented dude.

He said "Let there be…" and then it just was.

 WOW!

If I could say "Let there be coffee" and it appeared in my hand,

(let me clarify, coffee in a mug in my hand with creamer just how I like it because I like my coffee white.

 It would be weird, and hot, if there were no mug and it just dripped through my fingers, I think that would be a "let there be" failure.)

that would be the coolest super power ever.

 Instead I'll go with this other super power that says

"I can do All things through Jesus Christ who strengthens me."

What is my point? If you really want to know how to do something or to have a new tidbit of knowledge, LOOK IT UP! Study, learn, Do!

     7. Am I doing enough for my family? I think this is a common question that parents that stay home with the children ask themselves. I often think about what it would be like if I went back to work. The last time I had a paying job, as opposed to the volunteer work, was up until the day before my third daughter was born. That was 9 years ago. I don't regret my decision to stay home and take care of my family. It can be so very hard, and very rewarding at the same time. Yet, I get bored when the house is clean, the animals are taken care of, the kids have their work done and are playing, reading, drawing, mess making, and there is "nothing to do." When a trip comes up and we can't afford to send the girls on 'the trip that everyone else is going on,' I feel guilty. If I had a job, maybe we could afford it. But then maybe we couldn't. 9 years ago when I did the daycare cost to pay ratio, I would be breaking even after paying for the gas to get to work every day. The pay check wasn't worth much at that point. Yes it was a pretty good paying job, but it wasn't enough to draw me back. I think about my inability to ensure a future employer that my physical and mental abilities will remain intact. I would have to wake up early in the morning to get the kids back in public school, where they would no longer be able to achieve the same goals as we have at home. No it's not worth it. I am doing enough. I may not be a financial contributor, but what I do is enough.

     8. Am I doing too much for my family? I used to do everything. By everything, I mean everything. I think that the terms control freak or Obsessive Compulsive would not be used inaccurately when describing me, past me. Current me is too tired to care that my standards of clean are not even being met by me. With a fairly recent diagnosis of MS, I am still on the merry-go-round of medicine, or musical chairs if you will. I've tried a few and all have their "fun" side effects. These "fun" side effects have encouraged me to heed the advice of nagging friends to let my children help me, and not correct everything they do. So now they are responsible for their rooms, laundry, the pets and keeping the main areas of the house decluttered of all of their kid junk. My symptoms get worse with stress, and mess brings on the stress.

     9. Who's really in control of my life? Not me! But I sure as heck want to be. At 8PM I take my medication and a sleep aid so that I can fall asleep at a reasonable hour. Yet here it is 2:30AM and I have diarrhea of the mouth, or would it be brain or fingers or thoughts? I am finally getting tired, and feeling the earth's gravitational pull on my body. All these words have been freed from my brain. They are gone so I can sleep. I lay in bed at night planning what I will do with the very next day. But life never happens how I plan it. If I say "I will never…," you better believe that I will end up doing it. So who's in control? The Spirit of God that lives in me, or the flesh? That depends on to whom I have submitted in the moment.

    10. Have I fully submitted to God?  Over and over I have submitted my life to God. I have submitted all that "I own, and all those I love." Unfortunately I have this horrible habit of trying to rescind that offer of submission by doing whatever my flesh wants. I am guilty of repenting and then turning back around. I can see myself on that same cycle of sin that I drew on the board for the kids in Sunday School.

 

Praise God

Get Lazy

Wallow in the mud

Complain about the mud

Repent

Submit to God

Praise God

Get Lazy

Swimming in the mud again. Wow this is really nice mud!

Complaining and asking "Why me?"

Realizing, "Why not me?"

Repent

Submitting to God again…

And on and on the cycle goes.

     Why can't I just stay at the Praising God stage of life? Why can't every day be a mountain top experience of close intimate time with my Savior? Because what are the mountains without the valleys? Just tundra.

 

     Okay 3AM. The words are out. This is long, and just all over the place. Honestly, that is where my brain has been lately. All over the place. I'm not the same Brook I once was. I wanted to be a lighthouse, the mirror that reflected the glory of God to the world. Instead I have been hiding my light in the pages of insanity that have flowed from my fingertips.

     I haven't written about Audrey, because who can write about a wedding when they feel like this? Tired, so tired but can not sleep…. Gaining weight when I hardly eat, losing my mind no matter how fast I try to fill it back up. The faucet is running but I left a few drains wide open. Looking for a way, a treatment that will work for me. But in the mean time, all that I have, all that I am, I will use to the Glory of God.

 

And if you don't agree with me, well, I love you anyway.

 

A great big huge success

"Just" a dog

 

This morning I couldn’t cool down. I thought it must be 80 degrees in the house. Much to my surprise, it was only 70. I suppose I had just a little anxiety about the Public Access Test that Tater and I would be taking in just a couple short hours. My biggest concern was the part of the test where you have to unload your service dog from the vehicle while another dog is being walked by, and keep your dog in control. Tater has only been training for 8 weeks now. And, because of his size, most people with or without dogs tend to cross to the opposite side of the street when they see us coming. Very convenient for walking your dog, but not helpful when trying to get your dog “socialized” with other dogs. Tater loves other dog, but he would like to sniff them and play with them. Once he meets them, he is calm every time he sees the dogs that he has already met.

Anyway, on to the test. I cut up a few hot dogs and put them in the treat bag to use during the test as his rewards. I really think Tater would learn how to do back flips if he could have hot dogs as a reward. Tater loves hot dogs. We get to the store that we are meeting our amazing trainer at to begin our test. She got out her dog to walk past us as I was getting Tater to go in the store. He wanted to see the dog, he wanted to smell the dog, he wanted to play with the dog. He was excited. However, he didn’t bark, growl, or try pulling away from me. He just would not keep his butt on the ground. After the trainer put her dog away, we proceeded into the store.

We chatted as Tater walked beside me where he should be. One of the things we were talking about was something that she thought I should teach Tater to do now that he is picking up my keys for me when I drop them. What was the suggested task you may ask? If I drop the leash while walking, have him pick it up. I agreed that would be a great task. We walked through the store with Tater doing everything he was asked to do. He was not afraid of other people or shopping carts going by. He did not try to run away. He sat, followed the stay command as I walked away from him with his leash on the ground and didn’t budge until I called him to me. We even did this with me leaving to another aisle. Hubby tells me Tater was looking under the shelf and could see my feet so he knew I was there. Smart puppy (he’s a 7 year old, grey muzzled old man with the heart of a 2 year old puppy).

Tater quickly and enthusiastically did every task asked of him and soon he had passed the public access test with flying colors. When the trainer asked if I had anything I wanted to show her, I said Yes! and dropped my keys. I asked Tater to pick them up and he did. Then I did it a few more times just to show that he knew what I was saying. I decided to try the leash idea, and threw the leash down on the ground and asked him to pick it up. He leaned right over, picked the leash up by the handle, and placed it in my hand. We did this a couple of times as well. We also tried it with my hubby’s wallet; he fumbled with it a little and eventually (after 2 tries) got it in my hand. I have to work on his control with handing me things. He gets very excited and likes to throw things to my hand.

We were able to get several people to pet him and I was able to show off his command following ability. Varying: sit, stand, down, sit, stand etc. He was doing doggy calisthenics in the back of the store with an audience. When we were almost done, we stopped in the restaurant located in the front of the store for a little restaurant test. While sitting at a table, Tater was laying on the floor beside us. I had to drop some delicious looking black forest ham on the floor by him and tell him to leave it. He did it of course!

 



Tater grinning for the camera after
 passing his Public Access Test
An official Service dog!

 

I now feel confident to take my dog in public with me. When I am feeling dizzy in a store, he will be there to catch me. If (or should I say when, because it is inevitable) I drop something, Tater will be there to pick it up for me no matter what I drop. I now have the training to keep my dog under control and happily working beside me. The dog that I wasn’t sure would be around much longer has so much youth and vitality left in him. He now has a sense of purpose. He adores his job and me. The feeling is mutual.

Life with M.S. doesn't have to be hard. With the help of my sweet dog, things are going to get a little easier. 

 

Today I am Alive!

The last several months have been quite a challenge for me. I have felt myself slipping further and further away from who I really am. It’s hard to admit that I am not as healthy as I once was. Yes, I knew that I couldn’t run my daily 1-3 miles anymore, heck; I could barely walk to the mailbox and back anymore. It hurt to drive; it was even scarier than it was painful. My balance was off, in a perpetual state of drunkenness. However, I couldn’t admit that I was that bad off. I still had use of all my bodily functions, my arms and legs. It was when my brain started to go that I decided I had a problem. My desire to write vanished, crazy because that is one of my passions. I could no longer focus on the people talking to me. I used to be the queen of multi tasking, able to focus on four or five conversations at once with background music. So like I said, it was hard to admit that I had let myself go to such an extent.

I am ashamed of myself. I let everyone around me worry. Every day someone would tell me that they could see it in my face, or hear it in my voice or tell that I wasn’t feeling well by the way I was standing or walking. However, in my arrogance, I thought I was the master at disguising how I really felt.

My emotions were deadened. I was starting to feel like a shell of my former self. My family could see it, my friends could see it, people I barely knew could see it, but I sure couldn’t.

After months of steady decline, I was finally able to get through the red tape of insurance and specialty clinic miscommunications. It didn’t help that I am the only patient at my current neurologist that has M.S. and goes through a certain military insurance. The process was just as new to them as it was to me, so rather than getting the needed medicine in a couple of days, it took nearly two months. Regardless, I finally started my treatment of 1gram of Solu-medrol per day for 3 days.

The first day the home health nurse came over, started the IV line in my wrist, and showed my husband and me how to do the infusion for the next three days. I expressed to him how stupid I felt for doing the treatment because, like I said, I wasn’t that bad. He said, “The patients can never see how bad they really are.” After the first day the spasms in my legs stopped. After the second day, the pain that has plagued the left side of my body for almost three years went from a consistent six level of pain to hardly a one. The numbness and tingling… gone. After day 3 well, another home health nurse came to take out the IV line and took my vitals. He asked me my pain level. For the first time in years, I really had to think about it. Did I hurt anywhere? Well maybe my bones were still a little “cold” and achy from the infusion. However, the pain was pretty much gone.

So here I am, the day after the last infusion. My brain has rebooted in a sense. I feel like the lights are turning back on. I can think with a conversation, a video game, a crackling bag among other noises going on around me. I don’t need silence to make my brain function anymore. That’s nice. My back is a little tender, but it goes through times of intense pain to none at all depending on time of the year. Anyway, now I wonder. What was it that was holding me back from trying to do something about this earlier? Was I trying to do it all in my own power, relying on my own strength?

 For years, I have been trying every treatment under the sun. Despite all these treatments and following the advice and suggestions of well meaning doctors, family and friends, getting worse, with new active lesions. I tried a highly restrictive diet, exercise, stretching, supplements, Botox, antipsychotic meds, anti seizure meds, antidepressant meds, a lifetime supply of Ibuprofen, and other pain medications. Yet, none of that helped me. I really wanted it to, but it didn’t. I just wasn’t me anymore. I was a shell filled with pain and emptiness.

 Now, I feel like I have a second chance. I want to do so much. The energy is there, the spirit is willing, and the flesh for the first time in forever does not feel weak. Now I have to remind myself constantly not to push myself too hard, too fast. It is in my nature to do all or nothing. Now I have to hold back, and slowly work my way back up to, dare I even wish it, running again.

I took a nice training walk with my Tater today. He is turning into an amazing service dog. On our walk, he heeled exactly where he had to be and obeyed my every command. He is getting better prepared to help me for when some day, this medicine wears off and I will need his services again. When I first got my diagnosis in October, I thought that I would train him just in case I ever needed him. Fully expecting never to need his services, I was wrong. I needed him much sooner than I expected. I was to a point that whenever I got up, he would get up and walk me wherever I needed to go. He is that good. I’m not stumbling around, for now. It has only been 4 days since that first infusion. I may have pushed my walk a little too fast today because my calves are burning. But I read that the results of the medication aren’t always instant. So are there only good things to come?

I don’t think that my writing is going to be where it needs to be for a very long time. But at least for now I am getting my feelings out.

Today February 16, 2015, I am hopeful. I am optimistic that I can and that I will get better. There may not be a cure for Multiple Sclerosis, but at least there is a treatment.

Thank God for a treatment. The tears that I have not cried, the stages of grief that I have not gone through overwhelm me now because I feel better. I have to admit that yes, I really do have M.S. I really am sick. But I really can feel better.

I don’t know how I can be the light I want to be when I let myself sink so low. How did I let myself hide away under the pain? How could I deny that there was anything wrong? I can’t ever let myself come to the point where I was just a week ago.

I choose to be happy. I don’t want to be the nothing that I was becoming, dead inside, dead to everything around me, hiding from the pain inside myself. I was becoming M.S. I was letting it take over me. How did I let it take over me like that? I thought I was stronger than that.

What good is writing it down? It doesn’t feel any better to get it out. I still feel the same. I still feel ashamed and tired. I feel tired but like I can’t sit and rest. I can’t just sit. I have been still far too long. I am restless. I am anxious. I want to build, to create, to be more than I am right now. I want to change, I want to please. But I am not being pleasing. I am being nothing.

It is time to reignite. To shine bright and never let this disease get me down again.

“God is our refuge and strength, an ever present help in trouble.

Therefore we will not fear, though the earth give way and the mountains fall into the heart of the sea, though its waters roar and foam and the mountains quake with their surging.

There is a river whose streams make glad the city of God, the holy place where the Most High dwells.

God is within her, she will not fall; God will help her at break of day. Nations are in uproar, kingdoms fall; He lifts His voice, the earth melts.

The Lord Almighty is with us; the God of Jacob is our fortress.

Come and see the works of the Lord, the desolations He has brought on the earth.

He makes wars cease to the ends of the earth; He breaks the bow and shatters the spear, He burns the shields with fire.

‘Be still and know that I am God; I will be exalted among the nations, I will be exalted in the earth.’

The Lord Almighty is with us; the God of Jacob is our fortress.”

Psalm 46 (NIV)

Where does this all leave me? With the knowledge of what needs to be changed. How do I change it? I will let myself feel and take the treatments when they are needed, no longer denying that I am sick and knowing that I can’t do everything on my own. I have to remember that there are people out there that love me and want the best for me. If I don’t accept  their help, I am not allowing them to receive the blessing of helping me. Because my way of showing love is to give or do things for others, I must allow others to show love to me by allowing them to help me even when I can’t seem to acknowledge that I need help.

What is the bright side or encouragement of the cloud of MS?

There is a way out of the pain and darkness. All you have to do is accept the hand that is reaching out to you. With that, I leave you with a little blessing that always speaks to me when I am feeling… unsettled.

‘Be still and know that I am God; I will be exalted among the nations, I will be exalted in the earth.’