Brenda's Brain

Ancestry on my dad's side.

2018-11-25T19:51:00.000-06:00

I did some digging on my family history of my dad's side of the family and discovered some pretty cool stuff. Like this land deed to Joseph Mathie signed by Andrew Johnson, January, 15th 1867.

This letter is from as one of my ancestors as she made the move from Switzerland to America. Because it was originally written in German, it as been transcribed to English. It's a really fascinating glimpse into her experience!
The cursive writing reads:
"Our great-grandmother was 43 yrs old at the time she wrote this letter. She was accompanied by her husband + 8 children ranging in ages 17-3 yrs old when she made this oacian voyage from Laufen Switzerland to New York in 1878.
Our grandmother, Josephine was 9 years old at the time.
There was bitter confusion concerning the Catholic Church in Switzerland and Germany at this time leading to the formation of the sect known as the "Old Catholic Church." This church was then confiscated by the sect which claimed to be the "True Old Catholic Church."
Because of this religious struggle and for economic reasons - Stephen Meyer and his wife Marie Anne (Frey) Meyer came to America settling in Marathon County.

Round 2 of my first infusion

2018-06-21T18:35:00.002-05:00

Good report, this 2nd round of my first infusion went much better. In fact, it sorta proved to me that the nurse for my very first infusion didn't... well... I don't want to say she didn't know what she was doing, but she certainly didn't do very well compared to this last nurse.

Here are some things I didn't have to experience today compared to my awful first time around:

Puking! This time when I told them was allergic to Tylenol I wasn't force to take it.

Blown vein.

15 days later and it still looks icky.

Being dismissed. I was listened to when I told this new nurse to use my right arm because I'm left handed (and I still had a gnarly bruise on that arm). Cause, Jiminy Cricket, give that arm a break! Plus, unlike last time, before putting in the IV she numbed the sight! Needle in - smooth like butter.
Painful burning sensation every time the medicine started pumping in. That sucked last time and apparently that should not happen. It probably means the IV wasn't in correctly. This time, I only notice the medicine pumping in when the IV tubes suddenly felt cooler.
ASTHMA ATTACK! I don't think this is any nurses fault. I just had a bad reaction the first time. Was it just because I was acclimating to Ocrevus - probably, or was it because the IV wasn't in correctly - don't know.
Dizziness. I am a little dizzy but not like I was last time.
Being pumped full of steroids. Because I didn't have an asthma attack this time, there was no need for me to be pumped full of steroids. I did have to have a little before the infusion, but that is routine.
Totally wiped out. I was stupid and drove myself last time. I should have known better. Matt took me this time and I am sooo very thankful. I'm still feeling tired, but that is just the nature of Ocrevus infusions.
Migraine. The nurses are not allowed to give out Ibuprofen as an alternative. However, I am allowed to take Ibuprofen before my appointment, which I did. Wish I would have known that before my first appointment.
Uncomfortable bed. They only had a cart for me the first time. I got terrible neck pain which added to my migraine. After 6 hours I wanted to burn that cart! Today, this little princess got a very comfortable bed and I was smart enough to bring my neck pillow. The nurses said my room had a Zen like atmosphere.

After today my next infusions will be every 6 months. Since I now know how it should and should not go, I feel like this infusion stuff isn't so bad. I got this. At least I don't have to worry about forgetting to take medicine every day.

First Ocrevus (oak•ra•vus) infusion

2018-06-06T19:25:00.005-05:00

The first thing they had me do when I arrived for my infusions at Meriter, was take Tylenol and Benadryl pills. I haven't taken Tylenol in years because it really doesn't do anything for me but make my ears ring louder than tinnitus. Then, Nurse Amy, blew my vein in my left arm putting in the IV. I warned her that the left arm is usually fickle so she switched to the right, where she struggled with that one too and had to have another nurse come in and use this cool device that shows my veins. Eventually/painful, she got it in. I got light headed and threw up. Model patient.

They decided to skip the Tylenol since I puked it up and they think my allergy to it may be part of the reason I puked. It might be due to her digging around in my arm and sucking at hitting a vein, but whatever it was, luckily it cleared up.

Then they gave me liquid concentrated Benadryl in my IV which made me very dizzy and sleepy. I napped off and on but someone was in my room every 15 minutes checking vitals and meds.

At around noonish I started having trouble breathing - like asthma attack bad. Nurse Amy gave me more steroids in the IV until it went away. It's a normal side effect to feel a little out of breath while getting the Ocrevus infusion. But feeling like an elephant is sitting on your chest is something they needed to fix. Even a baby elephant wasn't allowed to stay. They also decided to dilute the meds since my body wasn't handling the strong medicine very well. Yeah, that is the reason I reacted so violently to Copaxone.

After I was finally able to breathe normally, they gave me more concentrated Benadryl and I was doozing again. Needless to say, no binge watching anything was gonna happen. When I was finally all done nurse Amy said I'm probably going to feel wiped out for the rest of the day and possible tomorrow too. Great.

Plus, lucky me, I got my period while at the infusion center and a migraine to go with it. Which causes a problem because I'm supposed to report any cramps and/or headaches that last longer than a day because it might be due to Ocrevus. Well now they won't be able to tell which is causing them.

Dumpster Fire.🔥 🔥 🔥 Burn, baby, burn. 🔥 🔥 🔥

Ocular neuritis

2018-05-09T18:42:00.001-05:00

2 weeks ago, I got the stomach flu at work. Retching in the garbage cans in the office was *shudder* gross. The next day my right eye hurt when I looked around. Went to the neurologist and she said it was oculars neuritis and gave me steroids to speed up the healing process. It did...sorta. The pain in my eye was gone but, my vision was terrible. I couldn't read out of that eye. It was like an old TV with bad reception and the screen has all that static snow, but you can sort see the pictures. Plus, the steroids turned me into the Stay Puft Marshmallow Man.
Neurologist said that was not normal and scheduled and emergency Opthalmologist appointment.

Update:

It's normal optic neuritis. Now just waiting for it to fully heal... hopefully.

The winds of change

2017-11-18T16:55:00.002-06:00

Some winds are a gale-force and some are a whisper.
I struggled working as a Grainger Customer Service rep for almost a year. The floors vibrated because of people walking and my MS didn't like it. I could only work part-time because of it. Even then, I would be dizzy everyday after work and needed a cane to walk around while working there. I was in a constant fog as I struggled with the dizziness and multi-tasking while trying to handle customers over the phone. I was miserable.
I'm happy to announce I got a new job at Grainger as a Cash Processing Administrator on the first floor! The floors shouldn't vibrate so I can work full time now!
I've already been in training for a week in Illinois and can already tell this new job is a better fit. I won't have to multi-task while on the phone either. All communications are done through the computer. Yay!! I had a blast getting to know my new coworkers...and some old ones. I still have more training to do, but I'm more hopeful than I have been in a while.

This is close to the Grainger building where I was training. pretty cool.

On to change number two. We have been trying to refinance this house for a while. Our last appraisal was depressing. This time around it looks good. We hope to start getting some major repairs done that are in critical status.
Change three might not even happen. I was suppose to start Ocrevus infusions last week but had to cancel it because I was in Illinois. I honestly don't know if I want to reschedule. I've read up on the side effects that can happened during the first 2 infusions that are a week apart. Most describe flu-like symptoms that can last a few days or even a month. It's suppose to go away and after that I would only have to have 2 infusions a year. These infusions are an immunosuppressant. Meaning it can adversely affect how I fight off illnesses. Upper respiratory infections being the most common. I have asthma. My respiratory system is already compromised. Do I take the risk? Plus, with this new job I really can't afford to be sick. For goodness sake, I had 3 relapses while on MS medication! Starting to have my doubts y'all!
There are other changes that are currently in the works. Zach is shopping for a car and hoping to move out soon. Sam is flourishing in school and making new friends. I've been on a spiritual journey that has me deep in the Word. I've been really excited to learn some Greek and Hebrew to understand the Bible and the context in which it was written. I feel like I'm reading the Bible for the first time again with a renewed fervor.
I thank the Lord for His presence during all theses changes.

My first MRA

2017-07-14T18:11:00.000-05:00

So, I didn't mention this in the last post because I didn't want to freak people out until I had all the facts.

My doctors were concerned that I had suffered from a TIA stroke when I has my last episode. They didn't want me to fly until I got cleared and ordered a MRA to check my carotid artery.

This was kind of a problem because I'm flying to CA tomorrow! So thankful I was able to find a place that was able to get me a MRA for today. They even got me a CD with all the images on it to take with me.

My doctors rushed the analysis and cleared me to fly. Phew!

So my last post title is correct, it was not a stroke. Just a freak MS thing.

I don't care what you say, this picture is freakin' cool! It so neat to see how my veins run through my body - well, brain, neck, and chest. I have lots more images but, just like someone's vacation photos, I'll spare you the boring ones.

latest MRI

2017-07-13T18:52:00.000-05:00

MRI 7/13/17 Cerebellum

Had a MRI today. From what I can see on the scans there are new lesions.

The below picture shows my brain stem has a new lesion too. My balance has been really off lately and this is probably why.

Been comparing my 2016 MRIs and this is my best assessment. Of course, I will know more once my doctors review the images and let me know what they think.

No, It's not a stroke.

2017-07-10T20:20:00.000-05:00

This is a blog that is long overdue. on June 22, 2017 I went to workout at the Y early in the morning like I usually do. I forgot my water bottle, but I did a vigorous routine anyway. After showering I had coffee and chatted with my friend, Marcia. I wasn't paying attention to how much coffee I was drinking. I started feeling dizzy and Marcia walked me to my car and made me promise to let her know if I made it home safely. I figured it was just from hunger so after getting home and informing Marcia I was fine; I ate some breakfast. The dizziness wasn't going away but I figured as long as I was sitting I would be fine. To be on the safe side Zach drove me to work. I didn't last long there.

The bouncy area that I sit in can ramp up any MS symptoms I am having and I started to spiral pretty quickly. I sent my manager and her back up a message that I wasn't feeling too great. Andrea (the back-up manager) came over and asked what was going on. As I was explaining how I was feeling I started loosing the ability to speak. then my hands started to become weak. She said she wanted to contact the emergency response crew and remove me from the call center. She had to hold me up because my legs were starting to give out too and I could barely hold on to my cane.

In a conference room two of the emergency guys joined us. I was really struggling to talk, so Andrea got me a pad of paper and a pen but with my weak hands writing wasn't easy either. Sign Language was the best option, so I asked if anyone knew Sign. One guy boasted that he knew sign. I was thrilled! So, I started signing. and his eyes got as big as saucers. So I slowed down and condensed my signs. I could tell he still wasn't getting it. So much for that. We got a hold of Zach and had him pick me up.

Zach drove us home first to get Samantha and then the three of us went to Urgent Care. I figured it was just an episode that needed time to go away, but Zach was insistent I get checked out. Zach took care of the front desk stuff and paperwork while Samantha was my interpreter. Out of the two she knows more sign and can pickup on the signs she doesn't know yet...usually. They ended up sending me to the ER.

At the ER they ran a battery of tests including a CAT scan. Mostly, they needed to rule out that I wasn't having a stroke. While being wheeled to the CAT scan room I felt my hands were getting stronger and by the time I got back to my room my speech was starting to come back. About a half hour later most of my symptoms were gone. By the time I went home I was back to normal.

So, what did I learn from this? Coffee is no longer an option anymore. I think Marcia would slap it out of my hand if she saw me even try to drink some.
I also think a certain gentleman learned not to claim he knew Sign when, in fact, he did not.

Retinal Specialist and psychologist

2017-04-20T20:08:00.000-05:00

It has been an eventful day. My friend, Kimberly Holmes, drove me and Sam to Madison for our appointments. My appointment with the retina specialist went really well. He said the cyst in my right eye was unlike anything they've seen before, but now it's mostly gone and they are scratching their heads! Praise Jesus!!

Then, I find out Kimberly's van battery died. She had trouble getting people to help her. Finally, Someone was gracious enough to give us a jump and we went on to our next appointment - Sam's dyslexia appointment! She's super thrilled. As you can tell!

Today's appointment for Sam was mostly a meet and greet with the psychologist. Basically, they just want to make sure that it really is dyslexia and not a behavioral problem. So Sam had to answer around 40 questions about things like how she handles situations, drugs, family life, etc. Next appointment Sam will have to take a 3 hour test for dyslexia. It will be brutal and stressful.

Where to go from here?

2017-03-20T09:56:00.002-05:00

I took a week medical leave from work to work out if I can hold a job with my new visual disability. I noticed my reading ability has been hampered. It takes me longer to read now and I already was a slow ready because of dyslexia and my damaged left eye. Add in the scotoma maculopathy of my right eye and reading is a bit grueling.
It's like having a chip in middle of one of the lenses in your glasses. Yeah, it's annoying, but you can see around it and, in general, you can ignore it. Until, you need to see things in detail like reading. Then that small chip, that was so easy to ignore before, becomes prominent. The difference is, with a chip in your glasses as you move your eye past it you can see. My "chip" follows every where I look. It seems to get in the way of the first letter of every word. If the font is big enough my brain can fill in what the word is, but that takes extra time and energy. It's exhausting if done for a long period of time. Can I manage a job with this new hindrance? I honestly, don't know. I've been praying a lot and have been prayed for by others. Can work accommodate for this? Is there even a way to accommodate for this?

I'll never see things the same way again.

2017-03-15T19:24:00.000-05:00

Since Sunday I've been struggling with what I thought was a visual aura. But, as days past and the aura wasn't going away and I never got a migraine my neurologist was worried that is was something more serious and wanted me to see an ophthalmologist asap.

So They put me through a bunch of test. Some before dilating my pupils and some after.

Sam says I look creepy with dilated pupils.

The conclusion? I have a lesions in my eye. Let me try and break this down.

This is a picture of my left eye. Sure, it has it's problems, like a lazy eye and astigmatism but it doesn't have a lesion.

Now, here is a picture of my right eye with it's new fancy lesion. Can you see the difference? It has a dip. That is bad. That is what is causing my vision problems.

Here is another view for a different test. This one is a little harder to see. Where the arrow is it should be a darker pink perfectly circular area. If you notice, it has this lighter pink area with a tint of orange chunk in it. That is the lesion.

Such a small thing to cause so much trouble.

According to the ophthalmologist, this new development has nothing to do with MS. My doctor said I was just that lucky. Yes, she said that. Also, there is a pretty good chance that this is permanent. They scheduled me to see a retina specialist in April to see of there are any changes and to run more tests.

This thing makes reading difficult. My job is to read a computer screen. Even if it is for only 4 hours, it's exhausting and I don't know if I can do it everyday. I got a letter to excuse me from work for the next week, but then what? My doctor said I may just get used to it. I pray that it will either go away or I will be able to work around it. Only time will tell.

Failing Vestibular Therapy.

2017-02-28T20:40:00.000-06:00

So I totally thought I didn't need to go to vestibular therapy. My dizziness wasn't as bad as it was a few weeks ago. The therapist, Carrie Barrett of Dean Clinic, decided to test me. I failed. She had me stare at a tongue depressor with a large dot in it and shake my head back and forth as fast as I could without loosing focus on the dot. That lasted less than 30 seconds. I got so dizzy, nauseous, and sweaty they had to get me water and a cold, wet towel on the back of my neck. That nauseous feeling didn't go away for about 4 hours.

She also wanted to test my higher motor functions while doing simple tasks. I was seated in a chair then, I had to stand up and walk as fast as I could to an established point, then back to the chair and sit down while she timed me. Then she had me do the same exercise while carrying a full cup of water and not to spill it. The last exercise, I had to walk while spelling simple words backwards. With each new challenge I got slower. She said the most concerning was how much I slowed down while I spelled. It is a sign that my higher functions are damaged. I basically can't walk and talk at the same time, Ha ha ha ha! She wants to test this at least once a year, or more, to see if I'm experiencing a downward trend. If I am, there are safety concerns.

But, for now, I had to do my gazing exercises.

The image below is what I have to do 2-3 times a day:

I should video myself doing it, because it looks really weird!

Physical Therapy for vertigo

2017-02-14T16:19:00.001-06:00

Had my physical therapy appointment today for my dizziness. After running a series of physical tests, the doctor concluded I do not have BPPV. My dizziness is probably due to the lesion that is touching my cerebellum. So, next they want me to see a neurologist physical therapist. The theory is, that I might be able to retrain parts of my brain to help with my stability. I guess we'll see.

Memory poblems with my new job.

2017-01-30T20:08:00.000-06:00

MS can be sneaky. I knew I had a bad memory but I didn't realize how bad it has become until I got this new job. I'm really struggling with the ability to not only learn but to retain.
We had an all day training lesson today. Whenever we had a "challenge" to check our knowledge, I failed every single time. I was the only one who had this problem. It's gotten so bad, a person has been assigned to me after training was over. I'm the only one who has this extra help. He even asked me if I have memory problems, because that's how obvious it is. I got so stressed trying to keep up my left side of my face started to feel like novocaine was wearing off and my right leg got muscle stiffness. I have to admit I get irritaed with people when they say, "you'll get it". Honestly, it feels dismissive and patronizing even though I know they're not.
They don't understand the horror of not remembering the day before. The panic feeling knowing you will forget everything you learned that day. Some would say, by thinking that way I'm making it happen. Maybe I should carry around a MRI picture that shows the lesions in the area of the brain responsible for memory.
I have to do things repetitively constantly to retain the knowledge. This job has so may exceptions to the exceptions that may only be done a few times a month or less. That is not a enough for me to retain the knowledge. I got an email today that said I did something last Friday that requires follow up. I don't remember even doing it or what I have to do.
While I'm thankful that they haven't given up on me I wonder how long they are willing to put up with someone like me. Training is suppose to be over at the end of this week. I feel like I need another month.

Found this very dry, but informative video that explains the memory problems I have. It acually makes me feel better knowing that I'm not imagining the struggle.

First major MS episode at new job. NOT COOL!

2017-01-26T19:41:00.000-06:00

Started working at Grainger 1/16/17. Yay!! I have been in brutal training for the past week and a half. So. Much. To. Learn! I haven't felt this inept since geometry in highschool. Im in a class of 10 people and my trainers have said I am doing fine. I have a hard time agreeing with them, but I'm trying to stop being so hard on myself.
Anyway, I have had some MS problems since starting. The first day of training on the phones was this Tuesday and they made us take calls. I was not ready. My first call was sorta complicated but I got through it with my trainer, Joel, pointing out what to do and where to go. I cried when I was done with the call because I didn't know what I was doing. The rest of my calls that day got progressively worse. My face started getting tingly on my leftside, my nose was super itchy, and I was slightly dizzy because of all the elevator rides to meetings and the training room. By the end of the day I was feeling pretty crappy and dizzy. Thankfully, Matt drove me home.
I did debate quitting, but I decided to give it another shot. So next day I had a meeting with Joel to explain my MS and he was very understanding and accommodating. Most of my phone calls were normal orders that were easy. *Happy Dance*
Thursday started out fine. Had a mix of easy and complicated calls, but I was handeling it okay. I took the stairs as much as I could for the meetings until the last meeting. I was stuck on a call that made me late for my break and the meeting. One of the trainers, Tanya, waited for me and Rose and we all rushed to get to the meeting. I decided to do the elevator because I didn't have time for the stairs. I was a little dizzy when I stepped off the elevator but it went away during class room time.
Once we were done, I figured I would take the elevator back up since the last dizzy spell wasn't that bad and it went away pretty fast. I was horribly wrong!
I was so dizzy when I stepped off the elevator that I had to grab a chair to steady myself. Tanya and a fellow trainee helped walk me to my desk. I reasured them I would be fine and it would go away. I was again, horribly wrong.
I sat down and the spins went in to hyperdrive. I put my head between my legs hoping to make it stop. It wasn't working. I carefully went to get a drink of water from the bubbler and the supid thing sprayed me in the face! So I went to the bathroom to clean myself off and the spins hit me again.
A fellow employee saw me holding on to the wall to stay standing. she helped me out of the bathroom and got a manager who walked me back to my desk since I kept refusing any special treatment. I just kept thinking it would go away. Again, Wrong. Wrong. Wrong!
I put my head between my legs and noticed my hands were shaking too. Tanya asked me if I was okay and when I looked up, she gasped and said, "Oh my gosh you are white!" and ran to get the emergency response team that is on call at Grainger.
When I heared the anouncement, "Emergency response team needed in the training department." I started to cry. I was mortified! I was suddenly surrounded by, what I was later told, 8 people. It felt like everyone was staring. I had a woman named Rachael that came all the way from Ariens. That is on the otherside of the building! Grainger is huge!
Thankfully Karen saw someone looking for Matt and knew it was me that the announcement was for. They couldn't find Matt so she came over. I was so thankful to see a familiar face. As soon as I saw her I started signing. I was a mess and it was nice to be able to express myself since my mouth wasn't working too well. She ran and got me water, and stayed with me until Matt arrived.
I was taking to a conference room for some privacy. Karen got my glasses for me that I had left at my desk, and she had to put them on my face because my hands weren't cooperating - weak and shaky. I just kept praying it would all go away.
I didn't want to leave work since I only had 1 1/2 hours left, but I knew I couldn't take calls. So they just had me do some certification training that we have to do for the EPA. At least I was doing part of my job. It was so hard to concentrate that I'm going to have to retake it tomorrow. Whatever, I was just trying to make it through the day.
I'm home now and I feel better. My hands stopped shaking and the dizziness is minimal, but not totally gone. I'm hoping my ability to talk normal will be back by tomorrow.
Praying a good night sleep will help..

MS appointment

2016-07-29T22:49:00.001-05:00

Got to see Dr Luzzio today for my MS check-up along with an intern. They had me do most of the usual physical testing: walk fast down the hall, hop on each foot, touch my nose and then the interns finger -You know, the drunk test. Then we discussed any symptoms I'm currently having. right now, I have this annoying itchy/tingling sensation on my left cheek. I keep feeling the need to wipe my cheek which temporarily soothes the area, but it always comes back.

Anyway, We discussed what went wrong with Copaxone and what to do next. My reaction to Copaxone may be link to hypersensitivity. He said he didn't like how my recent MRI looked and that I need to be on some kind of MS drug, but none that involve needles because those are administered too fast and my body doesn't like that. So we are looking into Tecfidera. I don't know how I feel about it. It is pills instead of shots so that's a plus. It has some side effects. Some mild and some alarming. If I go on this medication I would need to visit the neurologist in 3 months and then every 6 months to make sure I don't show signs of liver damage or a brain infection. Have I mentioned that I miss drinking parasites? They never threatened to damage major organs.

Anyway, with all injection medication off the table I'm left with fewer options. I think I'm going to give this a try. I just pray I don't react as badly as I did with Copaxone. In order to be put on Tecfidera they have to test my blood and make sure my body can except it. I will know in a few weeks if I will be taking it.

Philippians 3:20-21New International Version (NIV)

20 But our citizenship is in heaven. And we eagerly await a Savior from there, the Lord Jesus Christ, 21 who, by the power that enables him to bring everything under his control, will transform our lowly bodies so that they will be like his glorious body.

I anxiously await the day for His return! That new body is gonna be sweet!

Recovery

2016-07-23T12:51:00.000-05:00

I realized I never updated on my recovery. So here it is.

I would say as of the 2nd week of July all the symptoms of my relapse have completely subsided. Yay!! I was healed in 6 weeks!

I honestly didn't noticed that I didn't feel a hint of weekness or numbness until someone asked how my recovery was going and I had to check myself. I feel a bit ashamed that I didn't praise God earlier. But I'll be doing that now. Better late than never. Throughout my flare-up I had a peace that I would recover. Never doubted it. Admittedly, I was impatient at times. Here are some scripture verses that kept me in check when I would become frustrated with how slow my healing was going.

Psalms 37:7 "Be still before the Lord and wait patiently for him"
Romans 12:12 " Be joyful in hope, patient in affliction, faithful in prayer."
Psalms 94:19 "When anxiety was great within me, your consolation brought me joy."
2 corinthians 12:9 "...'My grace is sufficient for you, for my power is made perfect in weakness' Therefore I will boast all the more gladly of my weakness so that the power of Christ may rest upon me."
All of Psalms 31
There are more but to be honest the Bible has so many encouraging and comforting verses I might as well just link the whole book! Biblegateway.com

I experienced things during my relapse that I can only attribute to God. One man from church, Tim, smiled at me when I walked in to church with my cane and eye patch the first Sunday after my flare-up and said, "That explains it!" When I ask what he meant he told me the Lord pressed upon him to pray for me, for healing and for strength and peace for my husband. He knew nothing of my MS flare-up prior to that.
Neurologist, nurses, and other doctors all told me that if I do recover it could take 3-6 months. I told them I felt that God would heal me faster than that. I told them of my prayer warriors and the trust I had in God's timing.

I have joy about my suffering that confounded some people. If there comes a time when MS causes symtoms that I can't recover from I will praise him still. I'm not boasting about my faith for I am a weak and fallible human being. I will boast about Him though and his great power and love.

Say What???

2016-07-12T19:50:00.002-05:00

Saw an audiologist and an otolaryngologist today. Let's just say I don't have your typical hearing problem. I'll try to simplify this two and a half hour appointment for ya.

First off, I have bilateral tinnitus. I wasn't surprised by this diagnosis. What surprised me was why I have it. It's not from loud sounds; it's most likely genetic. The tinnitus is not disturbing enough to worry about. If it was, most that he could do is prescribe something to deal with anxiety or depression. No, thank you.

Then he turned into a psychic. He guessed that I get migraines primarily on one side, that I'm dyslexic, that I have trouble hearing someone when I can't see their face, and in even mildly noisy situations (like at a restaurant or if a fan is running) I have trouble hearing what people are saying. I was shocked. It gave me goose bumps! From what I could understand, from all of the medical jargon, is that the part of my brain that processes hearing/language is the problem. As far as he can tell, it's not MS related. I'm just born with bad wiring. Normal brains can filter out ambient noise. Mine has trouble doing that. He was shocked that I sometimes interpret for my church. He congratulated me for being able to compensate as well as I have. I laughed and said, "So, it a miracle that I can hold a competent conversion." He also congratulated me on having a sense of humor about all this.

Next, he went over the vertigo that I had a while back. While he's glad that I was able to take care of it myself, he's not sure if it was an inner ear problem or MS since I do have a lesion that is on my cerebellum. If I get vertigo again, I'm suppose to go in immediately. He is not so sure Copaxone cause my lesion. Since I had the vertigo before my major relapse symptoms started, it is entirely possible that I was already developing a lesion on my cerebellum and that my adverse reaction to Copaxone influenced the progression of it. I have a neurology appointment in two weeks so I guess I'll find out what Dr Luzzio thinks about all of this.

It certainly has been a long interesting day. I learned that my brain was broken before it was broken.

Prism Sticker

2016-06-22T12:00:00.001-05:00

Got me a prism sticker from for my glasses!

It takes some getting use to but I shouldn't have to use it forever. This is just until my vision corrects itself.
Here is the low down.

The lesion is right around the visual cortex for my left eye.

Here is a diagram on how the brain connects the eyes. For all you biology students out there, you remember that the left eye connects to the right side of the brain and vise versa.

The ophthalmologist didn't want to do anything invasive since my eyes look healthy and they believe it will heal fully in about 2 to 3 months. For now I will use the prism sticker on only the left lens of my glasses to reduce my double vision.

The prism sticker doesn't give me perfect vision. I still see double when I look all the way to my left. There are different ranges for prisms. If I look all the way to my left I would need a 30 strength prism were if I look all the way to my right it's a 0. So they went with 12 for a happy medium. It works enough so that I see a single image when I look forward. Especially far away. close up is not a problem. Because it's a sticker, like a window cling, it does make my vision sorta blurry for my left eye.
All in all, I'm thrilled! While Joe drove me home I loved looking around and seeing God's beautiful creation. I certainly have learned to cherish my vision and thank the Lord for his complex and wonderful design.

Oh, and of course having a blast with this awesome dude! Thanks for driving me Joe!

MRI images from today's appointment.

2016-06-20T15:34:00.001-05:00

Still got double vision going on so my friend, Kimberly, took me to my MRI appointment in Rockford IL. Yeah, if you ever want to get lost just have me navigate. Long story short we got there...eventually. Here is a new MRI pictures. My last MRI was 5 years ago. Technology has improved and so have the images. My MRI pictures that I posted back in 7/17/2011 were small and blurry. Now they are much clearer.

White/grey areas are lesions. Lesions are bad.

I'm not a doctor so I can only pick out the obvious lesions and those are the ones I circled in red.

Edit/update 6/21/16:

My neurologist nurse, Lisa, called with the analysis of my MRI. There is only one new lesion and it's on my spinal cord. That lesion is the cause of my current relapse.

Otherwise, my brain hasn't changed in the past 5 years and is stable! That is amazing! I am even more convinced that this relapse was trigger by my violent reaction to Copaxone. I also believe my diet change is what has helped stabilize my brain for so long.

My double vision is linked to my lazy left eye that I've had for years but was triggered by the relapse. The belief, so far, is that because lazy eye is due to a weak muscle that when the relapse happened my left eye went further out of whack and can't correct itself without help. I will know more after my eye appointment tomorrow.

The neuro nurse seemed pretty shocked by how fast I seem to be recovering. They told me to keep doing what I'm doing (diet wise) because it seems to be working. I also credit my prayer warriors. I know their heavenly petition on my behalf are crucial. All glory to God, Amen!

Eye patches and pimp cane.

2016-05-31T17:32:00.001-05:00

Last night was my first time injecting Copaxone on my own. This time in my stomach because I got lots of fat there and that is suppose to make it easier. I had no problems injecting the medicine, but after a few seconds I had the same symptoms I suffered before. Heart palpitations, nausea, feeling faint, and a burning pain at the injection site. I was ready for the pain this time with a cold pack. It didn't help much. The other symptoms were gone after 30 minutes, but I writhed in pain in my bed for 3 hours trying to get some sleep before I had to get up for work at 3am. I think I got 3 hours of sleep. When I woke my right hand and leg were worse and I still had double vision.
I went to work anyway, ha ha ha ha. That didn't go well. Matt had to drive me to and from work. Thank goodness I start at 4:30am and end at 8am. The lifeguard that opened with me had to do almost everything. I couldn't walk throughout the building, or do anything that required me to carry something. Computers - I could turn on those at least. Greeting people was nauseating because they entered the building on my left. So I really struggled with my double vision. I used Matt's cane to get around when I needed too, but pretty much I just sat there and fielded questions on why I had a cane. The bright spot at work was my wonderful friend, Kathy, who prayed over me for healing.

After Matt brought me home from work, I called Copaxone and talked to them about my experience with the drug. The nurse they had on staff said my symptoms were concerning and I should call my neurologist. Duh, I was planing to. Called my neurologist but only his nurse, Lisa, was available. Shocker. Anyway, when I explained my experience with the Copaxone she was concerned my MS relapse was trigged by the drug. She consulted with my neurologist and they agreed I should stop taking the medicine and see if my symptoms subside.
I think I was better off managing my MS with diet. This drug is suppose to slow the progression of MS. Yeah, I don't think that's working out too well for me.
Lisa, said driving and working were out of the question and sent my employer some papers. The medical leave is left open ended because we don't know how long these symptoms are going to last. I'm also getting a handicap parking permit, for obvious reasons. Link to double vision eye movement video

In the mean time, Lisa suggested I wear an eye patch when I want a break from the double vision. I don't have one so I used my face mask.

Like a boss!

Then a beautiful friend of mine, Sherri Moore, couldn't just let we walk around with what Matt calls a face bra. She made me an eye patch that fits over my glasses.

Visit: Sherri's Custom Shoppe and browse her creative hand-crafted collection.

I have the most amazing generous friends! Love. Love. Love!

Then, my new cane arrived this afternoon - Christmas!

Yes, I geeked out over a cane because it can stand on it's own. If you've dealt with canes you know how annoying it is when they fall down. I think it needs to get pimped out somehow. I'll have some time on my hands so we'll see what happens when I get bored.

Worst MS relapse in a while.

2016-05-30T06:07:00.002-05:00

I'm experiencing the worst MS symptoms I have ever experienced since Thanksgiving 2011. My entire right side of my body, head to toe, is weak and mostly numb. It started in my right hand on Saturday and has progressively gotten worse. By Sunday night it had spread through my entire right side. Monday morning I woke to the same numbness and double vision problems. I have to constantly strain to refocus my eyes to see normal.
Matt and I have been going over what could have triggered this severe relapse. Food wise, there hasn't been any changes to my diet. So I don't think it is that. We have been spring cleaning which has kept us all busy and exhausted at the end of almost everyday this Memorial weekend. Could be that I did too much. Lastly, I took my first shot of Copaxone Friday afternoon. I can't imagine that would cause symptoms, but I did react poorly to it and maybe my body/brain is not done freaking out. All I know is that I'm very uncomfortable and feel a bit useless. Forgive any spelling and grammar errors, cause you know, double vision and a weak hand typed this.
At least the vertigo has given me a break for now.

New Meds

2016-05-27T23:17:00.001-05:00

I decided to go on MS medication, Copaxone. I have to inject myself 3 times a week. Could be worse; it could be a daily injection. The medicine cost $1318.57 for a 28 day supply. There is no way I can afford this so my neurologist got me in touch with Shared Solutions that is basically the financial assistance branch of the Copaxone drug company. they cover the cost of the medication up to two thousand dollars. So my Copaxone is basically free every month. They ship it to me in a bulky styrofoam cooler. I have to keep the medication in the fridge. It actually can be left out of the refrigerator for up to 30 days, but the Copaxone rep/nurse said to keep a week supply (3 syringes) out at a time.

For now I keep my injection supplies it in a handy dandy pouch that came with the autoinjector.

I also got a lot of information pamphlets and "helpful" materials.

The preparation mat is funny to me. They really do make sure you don't screw it up.

Then there is the tracking calendar/planner.

So here is what I have to do 3 times a week. I will be injecting on Mondays, Wednesdays, and Fridays. There are areas of the body that are best to inject. You don't want to over do it in one area so they recommend a rotating schedule. I'm probably going to use the app version of the tracking schedule. The app has an alarm that I will definitely need to help me remember.

Shared Solutions sent a nurse to teach me how to inject myself. Jason was a great guy and was very patient with me and all the test runs I wanted to do before injecting myself for the first time with the real thing. I decided to inject in the triceps of left arm. The needle entering the skin was no big deal; hardly felt it. The medicine is a different story. A few minutes after the injection it felt like I got stung by a bee. The area felt like it was on fire and a welt the size of a silver dollar formed. I freaked out, had a panic attach, and felt very faint. Jason took me to my couch to lie down. He said it's possible that I didn't push the needle in far enough. Turns out fat is my friend. You want to inject the medicine in the fat. Not the muscle or dermis. Those areas can be more painful.

This the sweet spot you want to hit.

I've heard from other people using this medicine that they always experience a burning sensation and develop a welt. Because of this, many patients choose to do their injections at night so they didn't have to deal with the pain all day. I guess it goes away by morning. I will soon find out because that is the route I am choosing. My injection this afternoon, that I did around 3:30pm, is still tender to the touch. The welt is gone at least and the skin doesn't feel like it's on fire anymore. Some recommend an ice pack immediately after the injection to help reduce these side effects. Side note, I miss my whip worms! They never caused me pain.

Gluten reaction

2016-05-09T15:24:00.001-05:00

I took a chance the other day and ate at GR's Sandwich Shoppe. GR's make amazing panini's and I miss them. They told me they had gluten free panini's so I gave it a try. That night I had numbness in my right hand and tingling on the left-side of my face. These symptoms have slowly gone away since going back to my no-grain diet. My face taking the longest even though of the 2 symptoms it was the least severe. I believe the sudden symptoms were a result of the sandwich since there have been no other changes in my diet or life. I guess I'm going back to no grains.

Anyway, in other news I'm going to be taking Copaxone for my MS. They are sending a nurse named Jason sometime in the next week or two to show me how to administer the meds. Also, the tinnitus in my left ear has gotten worse. It has been acting up a lot lately so I will be going to the ENT to have that check out.

Sam's cyst

2016-05-02T00:57:00.000-05:00

The cyst on top of her head is about the size of half a walnut shell. The one at the left-side base of her skull is about a pea size. They both seem very tender and frequently caused headaches.
Wednesday, April 13 2016, I took Sam in for a surgical consult with Dr. McDade. Upon evaluating the cyst he decided to remove the large one on top of her head right away. The other lump was actually a limp node and would eventually shrink. Sam said the numbing process was actually pretty painful but once she was numbed up they went to work while I tried to distract Sam by talking with her. Seeing them take out the cyst was stomach churning. It was about the size of the tip of my pinkie. They removed the balding part of her scalp completely and then sewed the scalp back together. She got a total of 4 stitches.

Sam spent the rest of the day in bed since they didn't give her any pain medicine and Ibuprofen wasn't really helping much. The next day she got the respiratory flu and was sick the rest of the week.

April 20th Sam went back in to get the stitches removed. She had recovered from the flu by that point and was anxious to get the stitches out because they were starting to itch.

The process went fairly fast and easy.

Sam no longer has pain and her hair is filling in nicely. The swollen limp nods have since gone away as well.
I'm am thankful to my family for their prayers as Sam went through this. We pray she won't have to deal with this again any time soon.