I got an email from Berry PR. They notified me of the Mobility Study results and asked me to pass it along to each of you. :)

There were actually two studies done, one conducted by Harris Interactive on behalf of Acorda Therapeutics, Inc. and the other by the National MS Society. The combined results provide information about people living with MS and their opinions in regard to mobility. Two-thirds of people with MS reported difficulty walking and state that their difficulty walking affects their quality of life and ability to work. This piece was not surprising. What was surprising however, is that nearly 40% of MS studied and 50% of their care partners report that rarely (if ever) discuss their mobility issues with their doctors. It also reports that 47% of MS patients stated their difficulty with walking has increased the cost of their care. 92% of them mentioned that they use some type of mobility device (i.e. cane, walker, scooter) and that it is "worth it" however 45% of them stated that they are/would be embarrassed to use such devices.

Hopefully studies like this will provide some much needed information to help all of us with MS. Personally for me and many people that I personally know who have MS, mobility is a real issue. I fall in the category of people whose cost of care has increased. Recently I had to start physical therapy due to problems walking. As a part of my physical therapy, I have been given special pillows for under my neck when I sleep as well as to help support my back when I am sitting (either at a desk, on the couch, or even in my car). Not to mention they have started me on a tens unit which is a little machine (not much bigger than a cell phone) that plugs into these pads and when turned on send electrical impulses into the muscle and nerve. I have not been doing it long, but I do think it will be helpful. Having said that, I did see the bill and it is almost $800....for such a little thing. But, it is worth it. Thank goodness I have insurance.

Anyway, for the full report on this study, click here or go to http://www.nationalmssociety.org/

Speaking of studies...Kim over at Mandatory Rest Period has a great study that also came out on the 25th about overheating and eye movement. Very interesting study. Go have a read!

I hope you are all well.

Last Monday I went to Seattle to see a few of my doctors. For the most part everything went well. The trip itself was not the greatest as I did not feel well. Fortunately though my dad drove and so it was okay.

The gist of it is that they are not really sure what is going on with my liver and pancreas. My levels continue to fluctuate. As of Monday they were still elevated. My GI doc is questioning if there is possibly a stone or cyst or tumor that is blocking the ducts. He wants to go in and do a procedure to see if he can figure out more about what is happening. So, back to Seattle I will go on April 1st. The procedure will be done on the 2nd, but I have to do all the prep stuff the day before so we will be going on the 1st.

I also saw my neurologist. She was very pleased with how I am doing. She said that considering all that has gone on with my health over the last few months, I am doing really well MS wise. I had been questioning how well I am responding to the Novantrone because over the last few months I have had an increase in MS symptoms, however she explained that anytime you are sick your MS will respond on some level. Seeing how sick I have been over the last few months, the level of MS symptoms that I have had is not that bad. She assured me that had I not been on the Novantrone and/or if the Novantrone was no longer working for me it would have been much worse. I was very happy to hear that. I am getting close to the point where they want you to stop the Novantrone though (dose wise) and so she is going to have me take 2 more doses (April & July) and then do another MRI in August. From there we will decide what the next step is. I will let you know when I do! :) Take care.

Did you remember to wear green today? I hope so as today the Luck o' the Irish is upon you. Our Irish celebration actually started with last nights dinner. All Irish! Corned Beef and Cabbage as well as soda bread. But then again my family is mostly Irish. Hagarty was originally O'Hegarty. The O was dropped when my ancestors came to America and then the spelling of Hagarty was actually changed several times. As a matter of fact my dad's birth certificate has it spelled 4 different ways.

I was able to find our family crest/coat of arms. Here is some interesting information. So, I am not sure what the tree means. The only thing I can think of is possibly farming as I know some of my family were farmers. I did find out that the red stands for Warrior, Martyr, & Military Strength and the white stands for Serenity & Peace. The Doves are a symbol of Love & Peace. In Ireland the Dove is regarded as the Bird of God. The Shield is the Chief which represents Dominion, Authority, Wisdom, & Achievement in Battle. I know my dad has a book with all the meanings, etc. He is very big into genealogy and I am sure he could give me lots of information about the meanings of our name and origins of our family.

So, St. Patrick as you may know is one of the most well known figures in Christianity. The modern day holiday is based on the original feast day which is also believed to be the date of his death. The holiday has been celebrated here in the US by Irish immigrants as early at 1737 and now by most everyone.

I have not been lucky enough to travel to Ireland, but I am hopeful that one day I will. In the meantime here is a video of how the Irish (in Ireland) celebrate today! Happy St. Patty's Day!

I will be heading to Seattle tomorrow to see my various doctors. I have my first appointment at 8:15 with my Endocrinologist, then at 9:15 with my GI doc, and finally at 1:40 with my Neurologist. Somewhere around noon I will also be meeting with the Serrano drug rep to pick up the give aways for the MS walk this year. Needless to say this is going to be a very long day! Fortunately my dad will be driving, so I should be able to sleep some in the car.

Things are definitely better than last week. My blood sugars are back to normal and I am not having as many problems with my asthma and allergies. I was in on Friday for follow-up blood work and my liver functions as well as my Lipase is still elevated. I suppose it is just going to take a while till it all evens out. At least I am feeling better. That is a start.

The only thing is that I am so tired. Always with the fatigue. I wish there was something that would help with that. So far I have not found anything that works for me. Anyone have suggestions? It seems that I have gotten to the point that if I do anything (and I mean even little things) I am not able to function at all the next day. I am not sure what the solution is but it is quite frustrating. I am finally feeling better and when I get up I feel mentally as if I should be able to get up and get things done, problem is my body doesn't want to keep up. Such is MS!

I am hoping my Neuro will have some ideas. My Oncologist has been talking about switching my chemo. I am on my 7th Novantrone and since I have not been doing as well (still better than before so I am happy about that!) he thinks it may be time to stop it and try something else. He has mentioned Cytoxan and Rituxan as options. I know a couple of people who were on Cytoxan, one of which was on for like 4 or 5 years and did great! It gave her her life back and she stayed on it as long as she could. I don't know much about the Rituxan except that it is sometimes used to treat Lymphoma, which could potentially be a plus for me since that is what I had. I am sure that my doc will have more information and we can make a decision on what will be the best treatment.

I am back at home! I can't tell you how happy I am about that. One week in the hospital is more than anyone should have to stay. I am still a bit shaky, but definitely better. I had my follow-up appointment with my PCP yesterday and he tells me it could take a little while to really feel better. Anyway, thanks to all of you that sent well wishes and prayers. I'm taking a little while away from my computer but will be back soon. Take care everyone!

Good news.....my Bronchitis is getting better. My cough is not as often, my shortness of breath is almost gone, and my lungs are working much better! This is great.

Bad news.....They are not sure what is going on with my pancreas. I am going in for a CT Scan in a little while. Apparently my blood work is not all that great. My white blood cells are really low and so they have called in my Oncologist to come see me. I am hoping that he will have some ideas. The lab people were just in and did some more labs. I know one of them was an LDH (checks for tissue damage and indicates tumor markers) and the others were specialized tests that have to be sent out. I am not sure what they are, but I will find out soon enough.

So, why am I on my computer while I am at the hospital? The answer is that it is a great distraction. The hospital has WiFi and so what better way to distract me.

As of last night I have been upgraded to a clear liquid diet rather than just ice. Unfortuantely most of the stuff on the clear liquid diet is high in sugar and salt. The salt is not the worst for me at this point. The sugar is. Since the pancreas is the organ that puts out insilin and I am on both Solu-Medrol and as of today oral prednisone the last thing I need another reason to raise my glucose. The dietician came in and they were nice enough to get together a splenda clear liquid diet for me. Then she will help to transintion me back into real food as my body can take it.

As much as I have been trying to loose weight by eating better and exercising as able, this is not the plan I had for doing that. I am not sure what my weight it right now, but they did check my weight when I was admitted and I had lost like 7 lbs over the weekend. Crazy!

I hope all of you are doing well. Take care and I will update as I get more news.

Hopefully this finds all of you doing much better than I am. I am writing this post from the luxurious Kadlec Medical Center. That's right. In the damn hospital again. This time however has nothing to do with my MS. At least not to our knowlege.

Thursday I was having some pain in my side, but seeing how I have a liver condition, just figured it was my liver and tried to not think too much about it. That was until Friday when at a MS team recruitment table we had at the Court Club, I started to not feel good, at all. Lenita mentioned that my checks were getting really red and other than that I was pale. So, after talking to my doctors office, off to the Urgent Care for me. The doctor did a chest x-ray and I do not have pneumonia. He did not do any labs and told me that I probably have some kind of infection. He wrote me an RX for an antibiotic and sent me home. By Friday night I was running a fever between 101` & 102`. And lets not even talk about how I have had nothing to eat since Thursday night.

The fever finally broke Sunday afternoon. I figured this meant the antibiotic was doing its job. Problem is come Monday morning I still could not hold down anything (not even water or toast). After talking to my Primary Care Doctor, it was off to the ER for me. He was worried I was dehydrated (which I was....and probably still am in some respects). After a battery of tests, it turns out that not only are my liver enzymes elevated, so are the pancreas enzymes. This lead to more tests, which in turn lead to me being admitted. It was finally determined that I have Bronchitis and Acute Pancreatitis. Turns out the best treatment for the pancreas is to leave it alone. In every way possible. Which means no food or drink for me until the numbers start to go down, and then I will have to start eating slowly with a liquid diet. Fun...NOT! Luckily because of the Bronchitis and all the coughing they are letting me have ice chips from time to time.

Can I just say how sick and tired I am of always being sick and tired! This really sucks! So, as you can see I am hoping that you are all doing better than I am. I don't plan on being on the computer too much while I am in here, but Justin brought it for me as a distraction to the pain.