The MS Journey

Monday, February 21, 2011

A Saturday Visit

This past weekend Nana, Pop, and Uncle Michael came to visit. Even with Nana being with us a few days before, we were so happy to see them all because we miss them so. We had a great day playing and enjoying each others company.

Seth is in love with all kinds of balls and says "ball" every time he sees one.
I love how excited Pop was about playing ball with Seth.
We just recently got Seth a Mr. Potato Head. He has been a big hit.
Nana is helping Seth feed him.
Speaking of Mr. Potato Head, he came with glasses. Seth kept trying to put the tiny yellow glasses on, so while we were out and about we picked up some $1 sunglasses so that we could pop out the lenses for him to wear.
It only took a minute or two for Seth to realize how much more fun they were to play with.
Oh, how I cherish these moments!

Tuesday, February 15, 2011

"Little" and Seeing Movement

Today Bryan and I went to two different doctors while Nana kept Seth for us. We saw my OB, Dr. D and things are looking good with "Little." That's what we are calling Baby On the Way right now. It's something that just kind of happened one evening. Bryan was talking and he happened to say, "when little is born..." and so it has kind of stuck. I think it's kind of cute. Things are starting to feel real. Sure we saw the heartbeat and the spine at 8 weeks and we have known that another baby is on the way for a while, but it is just so different the second time around. In the beginning especially there were days when Seth and I would be so consumed with something that I would forget about being pregnant. That's not so much the case anymore, especially since my belly is already protruding out. But I think things are different because we kind of know what to expect. We know about all the appointments and what happens at them. We already have baby stuff. We know what to expect with a newborn. We know about the sleepless nights and the overwhelmingly wonderful emotions. So we haven't really worried about much when it comes to "little." We have been concerned about the effect of the massive dose of steroids that have been going through my body on the the baby, but we have been assured that they should not affect him/her. I think after hearing that tiny heartbeart today we were again reminded that God is in control and everything is going to be just fine especially with "little."
After a nice lunch we then headed over to see Dr. K the neuro-ophthalmologist from Vanderbilt who comes to BG every Tuesday (thankfully). Dr. K was pleased that the steroids seem to be helping although they are causing blurriness in my good eye, but that is only supposed to last for the next week and half and then it should clear up once I am done with the oral steroids. Two days ago I could only see light and darkness in my right eye. Today I can tell if there is movement in the far peripheral vision. Definitely better. Not anywhere close to normal eyesight, but maybe we are headed in that direction. The steroids have been known to bring the vision back faster. We talked more specifically about all the test results from Thursday's adventures at Vanderbilt. The lumbar puncture ruled out infections, viruses, parasites, etc. The bloodwork all came back negative for those things too. I asked specifically about the inconclusive MRI results and based on the cases that Dr. K has seen, he seems to think it is going to be a diagnosis of MS. We can't know this for sure, if it even is MS, until after the baby is born and they can do another MRI with contrasting dye. Once we can see more on the MRI we might have a definite diagnosis.
I am ok with that. A diagnosis of MS is not the end of the world. It is manageable and there are a million things that could be worse. So I am not worrying about it. I am going to live my life the best that I can and I am going to cherish all the many blessings that I am given. One good thing about the IV steroid treatments though is that they have been known to delay or even prevent the onset of MS in patients that have received them so that's another reason I am thankful for the treatment I have been given. That's what I know for now and it might be a while before I know anything else. I will keep updating about the hopeful increase in vision, but now it's time to get back to living my life and enjoying each moment. Hopefully pictures and fun stuff will be showing up again soon. Thanks for all the love, my friends!

Sunday, February 13, 2011

Calling in the Reinforcements

We had to call in the reinforcements today. Reinforcements, meaning my mom. When I went in to for my next round of IV steroid treatments today (really yesterday but I have been up just about all night so it seems like still today) the nurse insisted that I keep a Hep-lock in (I think that is what it is called.) because my veins are so shot from this past week's treatments and all the bloodwork they did at Vanderbilt. So until Monday I have an IV stuck in the bend of my right hand. It is all wrapped up and I can barely do anything with it because every movement causes a shooting pain to go into my hand. I can't pick up my baby boy. I can't use a fork easily. I can barely type. Because of this we knew it was time for some help. Mom arrived this evening and is staying through Tuesday to help out and we are so thankful. Just tonight she watched Seth while Bryan and I went to dinner and then went to stock up on groceries. We also made a quick trip to buy a humidifier after a very scary and long nose bleed at 3 a.m. Friday morning. After talking with Dr. Kim at Vanderbilt, who called while I was receiving my IV treatment, we learned it was more than likely just a side effect from the steroids. He also mentioned all the test results are in except for one that he will know the results of by Tuesday when I see him again. All the results are negative which he assumed they would be. He mentioned the MRI was not normal but we already knew that. We might have more news about specifics pertaining to it once we meet with a neurologist at Vanderbilt. As for the the overall soreness from Thursday's procedures, it is going away or maybe it is being helped by this new dose of steroids. I am not sure, but it sure was nice to be able to get out and do some somewhat normal things tonight. I am thankful for each and every blessing and just know that every prayer, act of kindness, or encouraging word is not going unnoticed. Believe me I am blessed beyond belief.

Friday, February 11, 2011

Tests and More Tests

I had an appointment with a Vanderbilt doctor in the next town over yesterday, but because of the blizzard that hit the area, the doctor canceled his appointments for the day. So I went back to see my ophthalmologist. Shortly after arriving, I was given multiple tests and they realized my vision had decreased to only light perception in the right eye. My other eye had also weakened a little but it was still correctable with lenses (a good sign). After a few calls to Vanderbilt about my now semi-emergent state, Bryan and I were headed to Nashville. We met with a wonderful neuro-ophthalmologist who ran more tests and then decided that I needed some more extensive testing which included an MRI (without contrasting dye), blood work, and a lumbar puncture. We spent the rest of the day in the ER. (It was the only way insurance would pay for an MRI apparently.) Finally after almost 12 hours and 10 doctors later the tests were complete and we were able to go home around midnight.
We still don't know what is causing this eye problem. The MRI results were inconclusive. It could be some fluke thing, it could be MS but can't be confirmed from the MRI only, or who knows what. I did get to see my brain though which was kind of cool. We haven't heard about the lumbar puncture results or the blood work yet, but I will say that a lumbar puncture is no fun at all. I really don't want to have to do that again. I am extremely sore from it.
This afternoon I got a call from the neurology department and they want me to undergo another round of IV steroid treatments for the next three days. I go into the Infusion Lab again tomorrow at the hospital. The steroids have been rough. It is a very strong dose and it is very hard to rest at night while under treatment, but the doctors are hopeful that another round will hopefully help me regain vision sooner if it is going to come back. We will see. I am adjusting to only seeing with one eye though and I sure am thankful that I am not completely blind. Things could always be worse. :)

Monday, February 7, 2011

The Road to (Hopefully) Regaining Vision

Well, hopefully after a morning at the ophthalmologist's office, a visit to the hospital, and then scheduled doctor's appointments for every day for the rest of this week, we are on our way to regaining some vision (although it's not guaranteed). When you have a swollen optic nerve, the causes could vary greatly from an early symptom of MS (Multiple Sclerosis) to something as weird and random as just a swollen nerve. So we can't really tell what is causing this whole thing to happen until we can take a deeper look inside my head/body. It looks like an MRI might be in my future later this week once the Vanderbilt doctor I am seeing on Thursday takes a look at me, but then again he might see no need for that. Who knows? After my ophthalmologist contacted my OB this morning, we learned that the high dose of IV steroid treatment would have little to no effect on the baby so we had the go ahead to do that first to relieve the swelling. On my visual exams on Saturday I had 20/40 vision in my right eye. Today I could only see fingers which apparently is so bad that they don't even give you a number anymore with that. So it has been a big loss of eyesight in the last two days. The swelling had not really increased though, so that was a good sign. After going through several different eye exams, I headed over to the hospital to get my first dose of the IV steroid which they were able to do locally. I will go back tomorrow and Wednesday to take the other two one-hour treatments. On Thursday I will head to the next town over to see the Vanderbilt doctor who comes up to Glasgow, KY once a month (which happens to be this Thursday). I have to say I have been very lucky in the way I have been placed with all these doctors especially since it all began at the local Value Vision and thankfully I can use my medical insurance since this is medical kind of stuff. Because I am doing the IV steroid treatment there is hope that I will regain some vision in my right eye, but then again I might be like this forever. I was hoping glasses could be an option, but since it is nerve related there is no fixing it unless the nerve is fixed, so that is a little discouraging. But I am hoping for the best and should this lead to MS or a tumor or some weird brain disease or whatever else, we know that God is in control and we will get through this. So please keep praying, but we are staying hopeful and as positive as we can.

On a different note, I am glad that my blogger's block is coming to an end. I've missed this whole blogging thing for the last little while. Now I just have to get back to taking lots of pictures and learn to use my other eye while looking through the view finder. :)

Saturday, February 5, 2011

In a Blur

Not being able to see like you have always been able to see is not fun. Glasses seem like a simple solution, but not when you think you are going blind in one eye. That is how I have felt since Thursday. This morning I finally headed to the quick care clinic in hopes of finding out what was causing some pain and blurriness in my right eye. Because we don't pay for vision insurance, I was hoping to find out that I had some sinus pressure and that I could get an antibiotic and everything would be hunky dory. As I was handing in my slip to the receptionist she asked what kind of eye pain I was having and then after discussing with the nurse practitioner went on to tell me that I needed to go see an eye doctor instead. They were able to rule out sinuses mainly because I did not have a sore throat or runny nose. After learning that the local Doctor's Value Vision was open on Saturdays I headed there. Fast forward to two hours later, I was sitting in an exam room with an on-call ophthalmologist who graciously came over to the clinic to see me. He and the eye doctor at the clinic had determined that I had a swollen optic nerve, something that is normally treated with a high dose of steroids. So high of a dose they recommend people with this problem to go to Vanderbilt to get a 3 day IV dose. The problem is I am 12 weeks pregnant and as far as we can tell no one knows what could happen if a pregnant person took this treatment. Trials have only been conducted with animals and the results weren't so great for them. As of right now, the ophthalmologist is awaiting a call from the head neuro-eye doctor at Vanderbilt to see what he says. I am awaiting a call from the ophthalmologist, and am praying that this whole thing will just magically be fixed. (Any additional prayers would be appreciated and I should have an update on Monday after going to see the ophthalmologist in his own office and getting some advice from my OB.)

Tuesday, February 1, 2011

In Love with Limes

Lately, I have been in love with limes. I love the scent. I love the taste. I love the freshness they add to just about everything (including popcorn!!!). So the other day I gave Seth half of the lime I was using in hopes to get some funny sour expressions. That didn't happen at all. Instead he spent 30 minutes or so digging into his lime (literally) and savoring the juices. Guess he's a fan, too. :)