That dreaded phone call...

Jeff here.  We haven't done very well at documenting whats been happening. Basically, it's been a no news is good news kinda few months or in the case of the blog..  year!  Health and MS wise, things looked to be going great.  Dawn has focused on her health over the last 6 months and has been feeling great.  She quit smoking (yeah! :) ), started eating better and tracking her food. We both started started working out 3 to 4 times a week and joined a gym. Her energy level has went up, she is much stronger and her over all attitude has been wonderful. She still gets the numbness after a work out but we have accepted that and know it will be there. We had her yearly MRI and check up in January.  We talked to her MS Doctor about the new medications coming out.  I cant tell you which ones or what they are other than its a pill and we wont have to do injections  ( :) )Were excited to give a few of them a try.  They are still very new so we'll be breaking new ground for our office as soon as we get the green light to try one. We discussed how the copaxone has been going.  Over all, we liked the copaxone.  No injection problems.  No viable side affects.

Yesterday, we got the phone call that the MRI and blood work results were back. Blood work looked great.  Most of the deficiencies we were watching are better. One vitamin, B 12, was low but can be adjusted with a another pill easy enough. As far as the MRI, No major changes to the lessons were detected. HOWEVER the brain tumor which was discovered when she was very first diagnosed year and years ago (1-2000 I believe) and has not been active since it was discovered...  is active again.

Were not really sure what that means just yet.  Im sure we will be having a follow up soon. So, look for another blog soon.

So, its been a while!

Since Dawn hasnt posted anything in a really long time....  I asked her if she would add me so I could post for her.  For those of you who dont know me.  Im Jeff, Dawns Dear Husband (Or DH as she refers to me on the internet).  This year has been kinda crazy. Dawn's medicine - Betaseron, quit working and she started to have some relapse.  We got with the Dr. and decided to try a different drug - Copaxone. Its veiwed by some as a step down but its one of the few MS drugs she hasnt tried... so why not!  It was crazy actually getting her on it.  We had all sorts of trouble getting it.  After being off medication for about 5 months, we finally got everyone on the same page and the meds started showing up.  Nothing new to report other than that. In this case...  no news is good news!  Until Next time!

No I don't want a hug

Seeing as I haven't blogged here for a while....I thought I should.

Today I was introduced to MSHug, WOW that was painful. MSHug is a tightness in your chest, it can happen anywhere from below your rib cage down to your waist and has been know to occur as far up as your neck. It feels like something has grabbed a hold of your chest/body part (in this area) and is squeezing. Thank goodness this only lasted a few seconds while we were at lunch.

The fatigue is still prevalent. Man I could really use a nap in the middle of the day, but that is not likely to happen. :) Besides headaches, dizziness and balance issues everything is GREAT! LOL

I can say I am happy with the cooler weather coming on, because this helps eliminate some of the fatigue, even though it is still there. I just can not deal with extreme cold and extreme heat. The Myoclonus is still here...yah!! I am noticing it more and boy does it hurt to try and control it when I am in public. I already get the odd looks if I happen to stumble...I promise I have not been drinking!!! Could you image adding in twitching with that.

I have my next appointment with my Neurologist in January, so we will see if there are any changes. It seems as each day, month go by...I feel worse, but I am trying to keep positive and fight this stupid disease.

This is your brain on MS

Let me start this by saying this is not my brain image. The processes of getting my records is well, tedious and I wanted to update my blog prior to having to wait. So, I have "borrowed" an image from the internet and hope that I do not get sued. :)

So, the doctor's appointment was pretty boring for the most part, but we did find 2 more lesions. **note: let me preface this by saying I am not a doctor nor do I play one on tv** I choose to educate myself on this stupid disease so that I am aware of what is happening to me. The first lesion (upper left region) is located close (really) close to the frontal lobe. For those who are interested, your frontal lobe controls "planning, emotional control center and home of your personality, motor functions, problem solving, memory..etc you can read more here. So, my doctor and I agreed that it was a good thing it wasn't there. BUT it is VERY close. :( Now this is what is causing my myoclonus, which is basically involuntary twitching. I noticed a few months ago that my left arm and neck would jerk randomly. (think when your eye twitches).

Next, in the lower right corner of the picture is another small lesion in the Occipital Lobe which processes visual data. So naturally my doctor questioned me about vision problems. Which I have had none (that I recall). I do get the squiggly lines in my vision, but those have been there for years and my eye doctor told me it was from having dry eyes and a stigma. Now occasionally I see (what seems like) movement in my peripheral vision (so maybe I see dead people) who knows. :) So, we are keeping an eye (sorry for the pun) on that lesion.

So whats all this mean. Well, in my doctor's mine he wanted to put me on a steroid treatment right away and I basically told him "NO"! He agrees that these symptoms could go away by themselves and that is what we are going to do. Now he did prescribe me clonazepam; this medicine is an anti-seizure med to help stop the muscle jerks. (so far so good). So now is a waiting game to make sure it works and the lesion disappear. I have another appointment in about 6 months follow another MRI to see that there are no more lesions and that these lesions have gone away. I will keep you updated.

1st MRI of 2011

I had my first MRI of 2011. Will not know any results until later. I really hate MRI's. They have to drug me up on Zanex (Xanex) to stick me in this tight tube for 2 hours listening to pinging and banging noises. Just so they can look at my brain. Then I have to wait for any information from my doctor, so I just have to sit and wait. Are there more lesions, are there less? Where are they, are they causing my fatigue, pain, numbness or memory loss??

No matter what, I just continue to live my life day by day. I am not a religious person but I always rely on the statement that: "god does not give you anything you can not handle." This disease has taught me patience and strong will. No matter how much someone tries to understand, unless you have to live with this, you never will. So, just because you see a smile on my face, does not mean I am doing okay. My mother has taught me to hide my feelings, because lets face it, most people do not care "how you really are."

I worry everyday that I will wake up and not be able to walk or see or hear or talk. Will I be able to write or communicate? What will people think if I have to start walking with a cane? I don't want people to feel sorry for me, I just want understanding. Not everyone with this disease is feeble. Just because I can't remember a word, or a name doesn't make me stupid. I don't want to see pity and I don't want to be ignored due to ignorance on someone else's part. I am me and I will ALWAYS be me.

On a lighter subject I am totally going to try and get a copy of my MRI. I will totally post it here, look for the title: "This is your brain on MS" :)

Geez time flies....

When your having fun.

Went and spent our New Years at a friends house and had an awesome time. It's always good to be able to spend time and relax with friends. Jeff and his "pimp" hat made their debut. (rolling eyes as I type this. LOL) But all in all good times were had by all.

My mom was out of town visiting my brother in Georgia, so when went off to Jeff's parents house for Christmas. We unfortunately had to leave the dog behind and we were welcomed with a Christmas Morning picture of her from our Friends. (thanks guys :) ). I love spending anytime out there with his parents. I get the best rest and am the most relax when we are out there.

All and all everything seem to be going okay. Just now getting over a cold (or whatever you want to call it). Some coughy (I know, not a real word) thing. Still coughing, but feeling better. Went to see the MS doc on Monday, and had my anemia checked due to dizziness and falling. But was told it looks good. I am getting scheduled for an MRI sometime this coming week due to Myoclonus become more prevalent. They thought it was from my anemia, but since my numbers are good, they think there could be more lesions. Oh well we will see.

I wonder if I can get a copy of my MRI sent to me so I can post it??? HMMM!! I am totally going to ask my Doc. :)

New Chapter

Sometimes it is hard to restart, but when the time comes you know it. I have decided to start over with the weight loss plan. I have a dress that I need to fit into before October for a friends wedding. It is not like I have gobs of weight or inches to lose to fit into it, but it is the principle of it. It’s about feeling good about yourself and being able to walk with your head up.

I discovered about a month ago the Anti-Anxiety medication I was on was causing me to gain weight and to not be able to lose it. When I discovered this, I was extremely upset. I had recently started an exercise regime about 2 months ago, P90X. You would think that all the work that was being put into this routine, I would have lost at least 1 pound. I did not lose anything. Nothing. Nada. This was extremely frustrating and caused me to stop. Now that I have been off of the medication for about 2 weeks, I have already dropped 9 pounds!!! Talk about validation and encouragement. So since it is the beginning of the month and I know that I can do this, I will be starting back on P90X and watching what I eat. I am excited about what this new page in my life will be bringing and encourage by the weight lose to know that I can do this.

There are other crossroads in my life I am also working on. It is time to take a look and focus more on getting bills paid off, instead of just walking around with my head in the clouds. It’s also time to purge my life of all the clutter, weather its people or things. I have started distancing myself from the bad vibes and realizing there is no need to be so negative about situations or other people. Also the house purge will begin. I have discovered and decided (realized) that you can’t take anything with you once you are gone, so why do we live our lives for things? Anything that can be sold, will be sold. Anything that can be donated with be donated. Anything that needs to be thrown away will be thrown away. I mean I took a serious, critical look around my house and discovered that I have things that I don’t even like. Why? I asked myself. Why? I believe freeing myself from such clutter will help regenerate my life, my soul.

I am so excited about this new chapter that I am starting and can not wait to begin on my journey!!