The winds of change

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

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

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.

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

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?

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.

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.

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

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.

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!

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..