MS appointment

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

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???

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

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.

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.

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.

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

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

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

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.

Vertigo self cured

No ENT for me I was able to cure it myself! I did these maneuvers at home and they worked.
Epley Maneuver and Lempert (BBQ) Maneuver
I still scheduled an MRI for June 20th in Rockford, IL. I suppose we still need to know what is going on in there.

Thank the Lord my vertigo went away in time for me to be able to interpret for Lesetta for the Stateline Pregnancy Clinic banquet. It was a wonderful night of celebration and fellowship. I feel so blessed to have had the opportunity to interpret this event and hear all the wonderful things they have done to help women and children.

Vertigo. Weeee!!

On the evening of April 4th I started to feel sort of dizzy. It was a very busy day and I had been up since 2:30 AM so I just chalked it up to being over tired and went to bed early. The next morning I felt a little dizzy but I didn't make much of it until I was walking into the YMCA to start my shift. It hit my like a Mack truck. one of the life guards, Mackenzie, that came in with me to do the walk-thru, had to help steady me and get me to a chair. I could not stand-up without almost falling over. Turing my head even made me feel like I was on a roller coaster.

After my shift I went home and called my neurologist and told them about my symptoms. She asked me to come to the UW neurology clinic as soon as I could. I saw Dr. Jocelyn Wilke. She is so nice and personable. I like her much more than my actual neurologist. Dr Luzzio isn't a bad guy he just seems to be really busy and I get the feeling like he has better things to do. Anyway, Jocelyn had me do tests like walk in a line, touch your nose and then her finger, etc.. She also had me sit on the exam table and then, while she held my head, had me throw myself back and then she would look at my eyes to see if my pupils vibrated. The test was inconclusive so she said to see if it went away and came back. If that happened it's most likely an inner ear issue. She prescribed pills for dizziness at least. Well, she was right. The dizziness went away and a week later it came back. I'm waiting for a referal to ENT since she is gone this week. I want off this roller coaster!
In the mean time, I set up a MRI for June. The MRIs in Janesville are over a thousand dollars! I found a place in Rockford that only charges around $350 that my insurance covers. Hallelujah!!