First off let me say how much I am hating having MS right now. It has been a while since I had an actual MS exasperation and I guess I was due. Before I started the chemo I was having them pretty much every other month. I guess being on chemo and pretty much getting my life back (as much as possible for having the uncertainty that comes with MS) I have been fortunate to not have the dreaded relapses. It has been just short of two years since the last bad one, but this is probably the worse I have had. I suppose I was hopeful that as long as I was on chemo I would be okay. I mean, I know things have been rocky, but it has been because of other things....my asthma, my allergies, having bronchitis and pancreatitis. It seems there is always something.

Last week I was not feeling great. I had my appointment with my neurologist in Seattle and just kind of figured it was my typical reacting to the HOT weather we have had. I mean, it has been in the high 90's for the last few weeks. I suppose it could be worse as it was in the 100's this time last year, but still...90's is more than my body seems to be able to handle. Anyway, more than anything I was just having nausea and migraines. So, Monday we headed back to Seattle for my tests. What should have been an easy trip ended up turning into the nightmare week from hell. Monday afternoon I started to loose feeling in my arms and then in my legs. By the time I was to have my first MRI I had so much numbness in my arms and legs that they were having to help me around and then they decided it would just be better to have me in a wheelchair. I have never had any problems with my MRI's, never been claustrophobic or anything, until this time. I think it was the fact that by the time they got me in there I could not feel my arms, I was so weak that I was not even able to hardly hold the little button thing to call them if needed. Seeing how I was having a hard time they decided to do both MRI's at once. Figured it would be easier on me. And, it probably was. Thing is what should have been a 1 1/2 hour MRI turned into a 4 hour ordeal. Nightmare! They were really great at the hospital though. They were doing their best to keep me comfortable and every so often would come in and check on me because they knew I didn't have the strength in my arms to notify them if something was wrong.

Tuesday brought my echo which as far as I know went okay. I have not gotten any results back, but I have been in contact with doctors everyday this week and if there was something to be worried about, they would have let me know. Tuesday also brought a day of only using a wheelchair. Justin was great to help me around as much as I was able. My legs were still very out of it, really could not walk, but my arms were starting to come back a bit. Still numb, but at least I had some feeling. My neurologist is out of the office for the week and so her ARNP had me do some lab tests to rule out any infection that could possibly cause a flare. No infection though and so she had me come in and see her. Good thing I was in Seattle for some tests, right? So I went to see her and she was great. Her and her nurse were so great to jump all over it and get me some help. She looked me over, did all the exam and gave me the lovely news that yep, I am having an exasperation, and not just any ol' exasperation but a pretty bad one. She gave me a couple injections to help with the nausea and migraine and then shipped me down to the infusion center to start not 3 but 5 days of Solu-Medrol. We tried to get it set up so that I could come home but my local hospital could not get me started until today so they had me start Tuesday there at Swedish, stay an extra night in Seattle so that I could have dose #2 yesterday before we left, and then dose #3 was today back at home.

As if that was not bad enough, my blood sugars (BS) have gone way up thanks to the steroids (at one point yesterday it hit 457) and my blood pressure (BP) have been on its way up as well. We almost did not make it home without having to go into the hospital in Yakima, but the on-call doc walked me through some things so that we could get through to today. This morning brought a trip to the PCP who is managing the BP and BS. I was started on insulin as long as I am on the steroids, which could be who knows how long seeing how my asthma is also acting out and even when I am done with the IV Solu-Medrol I will still have to take 20mg oral prednisone which could also effect my BP & BS. Fortunately he is on top of things and so I am happy about that. We went from there to the hospital for my treatment and finally I am at home where maybe I can finally relax a bit.

Tomorrow is going to be another busy day. My chemo is coming up on Tuesday and so I have all of the prep for that going on as well. I have my 4th treatment at the hospital at 11:30 and then see my Oncologist at 1:30. Saturday I will have my last treatment at the hospital and then hopefully I can have a couple of days to do nothing before my chemo on Tuesday.

So, as you can see this has been the week of MS Hell! I am hoping that it will pass really soon and that this chemo will give my body the boost needed to get back to myself. One can only hope! I hope all of you are doing well and that your MS is leaving you alone, that the heat is not causing you problems and that your week is going much better than mine has been. :) Take care!

Have you heard of Chiari Malformation? Chiari Malformation is where a part of the brain, the Cerebellum, falls into the brain stem blocking the flow of spinal fluid to the brain. A friend of ours son, Zach, was recently diagnosed with Chiari Malformation and had major brain surgery Tuesday. There is no cure for this and the only treatment is the surgery.

According to the doc who did the surgery it was very much needed as his malformation was extensive, especially considering his age. He is 11 years old. The surgery went well but he is in a lot of pain. The recovery is supposed to be difficult and lengthy.

So, at this time I am asking everyone to please keep them in your prayers. And, if you live here locally, if you wish to donate something to them. Donations are also being taken at Joe's Chevron on Jadwin & McMurray as well as at Joey's 1983 on Court St. in Pasco. Thanks!

It has been a month since the last time I posted and yet it seems like just the other day. Time seems to really be going quickly. I can't even really think of much that has happened since my last post. I mean, I have had some things going on this week, but besides that, not much of anything. Then again, my mind seems to be elsewhere lately. I have really been struggling with my memory and so this could be part of why I can't seem to think of what all I have been up to.

Yesterday I did have my follow-up with my neurologist. She is having me return to Seattle for some tests next week. The appointment went okay. She had me do the usual exam....walking, pressing on my legs/feet, etc. Asked me about my meds, what has been going on and then decided that I need to come in for MRI's of my back. I just had one of my brain a few months ago, but it has been a while since they have scanned my back and based on what she saw she feels it is about time. She also has decided that this upcoming dose of chemo is not going to be my last. Last time I saw her we had talked about options as I was nearing my 8th dose of smurf blood and seeing how you can't have more than 12 in your life she was hoping to save some for a later date if needed. But, as I am having some stuff go on....possibly as a reaction to the heat, it is not a good time to stop. It just may turn out that I have the full 12 before doing something different. I am actually okay with that. I am hoping they will have something better to offer me by time that 12th treatment comes around. We will see..........

I also had my appointment with my pulmonary doc today. He basically shook his head, told me in all of his years as a doc, I am probably the most complicated patient he has had. My IgE levels are the highest he has ever seen, I don't respond to the meds like I should, my asthma is very much not well controlled even though I am on so much asthma medication that my pharmacy has mentioned these amounts can be dangerous, only there are pretty much no options. He could only think of two things left to do. Put me on steroids permanently which he does not want to do because of the risks involved, loss of bone, risk of infection, etc. Or, put me on Methotrexate, which is a form of chemo and has a whole slew of possible side effects. Really neither option sounds good to me and from the look on his face, I don't think he really likes the options either. We decided the steroids would be the lesser of the two evils for the time being. He sent me in for some testing today and without medication I have 52% lung power and after medication I have about 70% lung power. Not what either of us would like to see. Even 70% is not great and seeing how that was after a nebulizer treatment....not good. Anyway, he put me on prednisone for a while and then will recheck things next month to see how that helps.

So, that is what I have been up to. I hope all of you are doing well and the heat is not causing you any problems. It is hot here, but not as bad as it usually is by this time of the year. It has been steady in the 90's and we usually have temps in the 100's already. Hot is hot though and so I am doing my best to stay in by the A/C. If I must go out though my cooling vest is there to help out. :) Take care and stay cool!