What an interesting day today turned out to be. I had physical therapy this morning. It was such a different experience for me as I am so used to doing my physical therapy in the pool. It was nice to learn some exercises that I can do at home. It gives me a starting point so that when I am completely done with physical therapy in two weeks, I can continue to do the exercises on my own.

This afternoon my doctor had me come in to go over the results from my bone scan. It turned out the reason the results took a little while to get to my doctor was because the hospital lost the original dictation and had to have the scan re-read. What a pain! Fortunately the scan was basically normal. There is 'the appearance of increased uptake within multiple bilateral lower anterior ribs' but that can be monitored and may not be anything to worry about, according to my doctor. He said there is no guarantee that there is nothing going on, only that it is unlikely it would be cancer (that is good, I will take that) and that because of my history he will keep an eye on it. The scan did not show why my bone isoenzymes are elevated so he wants me to go in for a bone densitometry (DEXA) scan. They scheduled that for Monday morning (this time with stat orders). This is a pretty easy test, it should only take about a 1/2 hour.

From there, I had to rush to pick Nate up at school so that I could take him to his appointment. I decided to start him with a counselor because he has been having a really difficult time lately, between us moving here, his own problems, dealing with my illness, etc. I just want him to learn to find a way to be okay with all of this. How do all of you help your kids accept your illness? Nate gets so angry sometimes, he used to be okay with it, but I think that now that I am home and he has to see it more, it is harder on him. It was easier when I worked, especially when I was working in the medical field, and he was younger, I could hide things from him easier, I can't hide things from him like I used to. Not only does he have the right to know and understand what is going on, he can see it now. When I worked in medicine (when I was sick before) I would just arrange my work schedule so that I could go get my chemo after work one night and my daycare lady, Trisha, who was like a member of our family, would keep Nate late for me so that he would not have to see how the treatment would make me sick. We all worked together, it just worked. Now that he is older, he sees everything that goes on, he is too smart. Plus, I am not sure I would want to hide it from him, like I did then. I think now it would hurt his feelings and make him more angry.

Any suggestions on how you all handle these things would be appreciated. I think that is one of the more difficult parts of this illness, at least for me it is. Although there are days where I am in pain, tired, etc. (okay, there are a lot of those days) I would take that any day of the week over one day of my son being in pain (sad, angry, etc.) because of my having this illness. That is what gets me the most, him having to suffer because of my having this. That is the worst!

Tomorrow should be a more relaxing day. I don't have one single appointment scheduled, that will be nice. :) I need to go do the laundry, that won't be bad. Nate gets out of school at 1:15 and then my sister is coming over to visit. It is her 23rd Birthday on Saturday! I hope you all have a great night and an even better Friday! Take care.

Have you ever noticed when you have a really productive day, how the next day you seem exhausted? That was how today was for me. I think a lot of it has to do with my returning to physical therapy yesterday. It would be so nice if I could get through a whole week without feeling pain and exhaustion, but that is probably more than can be expected at this time. I do believe that with more time in the pool, I will eventually start to regain some of my energy and the pain will decrease. I just think, like everything else with this illness, it will take time. It is a process, not impossible to manage though.

Okay, so I thought this was funny! Of course my situation is not that drastic. It is always so frustrating when you go to get some testing done and you have to wait for the results. Don't you hate that? Maybe I am just too impatient. I don't expect that I will get the results for a couple of days (I know they need time to interpret the results and send them to my doc). It is just when you get a test done and very little is being said about what is really going on, it makes you wonder. Plus, after being a push pin for so long, the waiting game gets really old!

Today, as you could probably guess from above, I went in for my Nuclear Med Bone Scan. It was not too bad. No special prep or anything, so that was good! I had to go in first thing this morning to the hospital where they did the injection. It was some kind of radionuclear dye or something. Then they sent me home (at least they did not make me sit there for a couple hours and wait). The dye gives you that lovely metallic taste in your mouth, only no where near as bad as the dreaded steroids we are all too familiar with, and it seemed to go away after about an hour. A couple hours later I had to go back to the hospital where I was put on what was very similar to a CT Scan/MRI type machine (kind of a cross between the two, not as confined as a MRI however, you are not stuffed inside of it, it moves, you don't!). The test took about 45 minutes. They strapped my arms and feet together with these bands so that I would hold still, that was the strangest part. I have never even had that for a MRI when I was in there for 4 hours. I got to see what part of the scan looked like (the very end, he re did the chest/ribs). What I saw looked very much like an x-ray to me. He said the "other" computer had a more detailed imaging and that is what the Nuclear Med doc would be reading. The one in the room was just a radionuclide version, not like I could tell one way or another if it was normal or not. So, this is how I spent the first half of my day.

On to part two of my Monday. I went to physical therapy and got in the pool. Yeah! It was nice to get into the water. It was such a nice day today, I think it was about 70' or so today. Since my relapse I have not been able to go to physical therapy, and so I wanted to finish my last 4 sessions before my insurance changes at the end of the month. I will do two sessions in the pool and two out of the pool. I go back on Thursday (out of the pool). This way I can learn some things that I can do at home that will not hurt my back (herniated disc) or make my other health issues worse. Next I went to one of the gyms to take a tour. It was an okay place. The price is reasonable. It is the closest place to my home, which is a big plus for me. The less I have to travel to get there, the more likely I will be to go. There are a couple of other places I still want to check out before I make a decision though.

By time I got home today it was already 5:30 p.m. It was like a work day or something (left at 8 this morning, back at 5:30 tonight), if only........... When I got home it was time to make dinner (Salmon and rice) and then the Schwans man came by! He has not been over in a couple of months, so I was so happy about that!!! I love it when I can do some food shopping from my living room. Once he left, it was time for Nate to go to bed. What a busy day!

I have a feeling by time Friday rolls around, and it is time to take my injection, I will have no problems sleeping. I will probably be exhausted. My whole week is going to be this way. Tomorrow is not quite as busy, but I do need to get some things done at home. Wednesday and Thursday are chuck full of doctors appointments and physical therapy. Nate even has an appointment to go to. Plus, my sister's birthday is coming up. Next week looks to be even busier. Along with multiple appointments and physical therapy, I have to return to Seattle. I am glad to be busy though, it keeps my mind active. It is so much better than sitting at home!

I hope you are all doing well and staying busy (but not too busy, I don't want to hear that anyone over did it!). Please take care and keep in touch.

This time of year always makes me want to take a step back. It is a good time to reflect on what I have done so far this year, and how I am living my life. It is a good time to remember what is important in life. For me that is my family, faith, friends, and health. A great sacrifice was made for each one of us! and I could not be more appreciative. I know that I am not perfect. I have made many mistakes in my life and so I am very grateful. Easter can be celebrated in so many ways. It seems throughout my years there has been everything from family get togethers, Easter egg hunts, midnight mass (at boarding school), Church services, and time spent alone.

My hope for each of us would be that if nothing else we each take this time to look at our lives, remember what is important, and appreciate what we have, the blessings we have been given. I try really hard to be a positive person and be grateful for the things I have, for the MANY blessings I have been given, but this illness can sometimes give you a dose of depression that creates a negative force; a low-self esteem. I want to make it my goal this Easter to be grateful for all of my blessings, to have faith, look for guidance and know that things will be okay. I hope that you all can also find a way to have a positive outlook for the future. Find a way to leave the negative in the past.......where it belongs. Today is a new day, let's move forward with that!

It is spring outside. Another great benefit to this time of year. The flowers are blooming. It is so beautiful. I think I need to try harder to have fresh flowers in my house always. I used to do that. When I was sick the first time (when I went through chemo) I went out of my way to always have fresh flowers on my dining room table. Then it just stuck with me. Even after I was okay, every other week I just went in and bought the flowers. Somehow it seemed to liven up the place. I have a couple of plants, but they don't seem to do the same thing. Maybe I should start to do that again! I did get some flowers for Easter, and they look so nice. Daisys! They are such a friendly looking flower. Tulips are my favorites though.....well, maybe I think I love them all, well, except carnations. Never really took to those, they are okay as a filler, but not my favorite. I like the more exotic flowers.

Next order of business....the gym membership. So, the sun is out, flowers on the table each week, open the blinds (so it is not so dark inside - need to be better about this), and get to swimming. That should help to bring about a more positive outlook on things. Then my next goal, is to feel well enough to start taking Buddy out for daily walks (currently Nathan does this as I can't go far). That would be grand!

I hope you are all doing well. Please enjoy yourself this Easter holiday. Get some much needed rest and relaxation. Take care.

Hi everyone....I just wanted to let you all know about Heidi over at Jewelry by Heidi. She has made some bracelets to support MS. They are made from a czech crystal, which changes each time you look at it (very much like MS). It has a silver charm on it which says strength. She is charging $10 for the braclet and contributing 100% of the proceeds to the NMSS through May 6th. After that she will still be contributing a large amount of the proceeds to the NMSS.

What a busy day it turned out to be. I felt like I was constantly going in circles. The day started with my dad's appointment. He had a procedure at 7 this morning and needed me to drive him home after, seeing how he was put under sedation. After taking him home, I had to turn around and go back to almost the exact same area for my doctors appointment at 11. After my appointment, I had just enough time to come home, have a bite for lunch, and pick Nate up from school. Next, we were off to his appointment, yep, also in the same area. What the heck? I seemed to be running in circles all day.

Anyway, my appointment went okay. About two weeks ago I went to Seattle to see my GI doctor for follow-up. I had just done an endoscopy & colonsocopy the previous month and he wanted me to come in to go over the results and do some bloodwork. It seems I have this very frustrating thing that happens quite often, my test results are abnormal enough to show there is something going on with me, only normal enough not to give the doctor's an exact answer to what is going on. Talk about frustrating! Although, I have MS, I should be used to that right? I don't think you ever get used to that, it's a pain no matter how you look at it.

First order of business, labs. He ordered 11 tests. They were looking mainly at my liver function, immune system, and electrolytes. There were some specialized tests done too. Those took forever to get results (Dr. Shaw just called me with the results the night before last). This is where my appointment today came in. Good news is that my liver is on the mend. It has taken a long time, but finally it seems to have repaired itself, or at least it is getting there! My electrolytes, which last month were all low, are now back to normal (thanks to the use of supplements)......whatever works!

The test he was especially interested in was the Alkaline Phosphotate Isoenzyme (ALP ISO) test. My ALP has been elevated for quite a while now. The ALP is, as he explained it "like a battery indicator light in your car", it is a clue that something is not functioning correctly with our system. So, this is why he did this more specialized test. This test breaks down the total ALP ISO into three areas: Liver, Bone, and Intestinal. The area we were of course most concerned with, and the ONLY area we considered to be a concern, was the liver. The good news: the Liver ISO came back normal. The bad news: the Bone ISO came back abnormal. The not-so-great news: the Intsestinal ISO also was abnormal. This is not as significant as the bone, however, or as big of a shock, considering GI problems are in my family history (my grandfather died of colon cancer, and I have GERD, which could be what elevated this enzyme). My GI doctor says it is not something to worry about, so I'm not. It can be easily monitored.

The bone, now that is a whole other story. None of us thought for a second that would be a problem. Typically the only people you see with abnormal levels are those who are over/under a certain age (I think it is like above 50, under 13...something like that), and someone who has a bone disease. They have scheduled me for a wholebody nuclear med bone scan to be done first thing Monday morning. I have to go in and get some kind of injection and then the scan is done several hours later. Apparently the radioactive injection has to go through the bloodstream and into the bone/bone marrow. This way they can see what is going on when they do the scan.

There are so many things that could be going on, and.......it could be nothing, although with my luck, and health history.....unlikely. It could be something like osteoporosis, degenerative bone disease, a bone marrow problem, who knows? I have already had cancer 3 times (skin @ 11, ovarian @ 24, lymphoma @ 28), and now the MS (dx @ 27). How much more can I take? There are so many things that it can be, so I have decided it is best not to speculate. I have to stay positive and hope for the best. I hope I will know something on Monday however, because I find the worse part is the waiting. It will all depend which doctor does my scan. The last scan I had (last month, SBFT) was great, the radiologist read it and gave me the results before I left. You gotta love that!

Sorry girls....it turns out that the NMSS Girls Night Out function is all sold out. Here is the information though, just in case you were one of the lucky few to be able to get your call in and got one of those last few seats.
Date: Thursday, April 28th, 2006
Time: 5:30 - 8 p.m.
Location: Salty's on Alki 1936 Harbor Ave SW, Seattle, WA 98126
About: Come join us for a night of fine food and fun while having four MS experts to answer the questions that only women have about living with MS. You will have four leading female MS experts, Drs. Jodie Keselkorn, Lily Jung, Mariko Kita , and Sylvia Lucas to share their expertise and insight about women and MS. Would you like to hear the latest information about meditation and the benefits it has for people with MS; how about how hormones play a role in MS, (this includes pregnancy and menopause); do you want to know more about why women are diagnosed more often than men; or do you have concerns about MS and intimacy? If so, then join us. This is girls’ night out, your place to ask those personal questions as you enjoy the unforgettable view of Seattle.

I have always been more of a night owl, but ever since I started taking the Avonex, I seem to be having more problems with my sleeping patterns. The night I take the injection, well I am up and down due to the pain, then the following days I try to sleep a lot, sleep through a lot of the symptoms I suppose. This leads me to a couple days of insomnia. The strange thing is that although the sleeping pattern is erratic, I would think I could at least get some good quality sleep, because I am EXHAUSTED most of the time. That has not been the case. I used to be one of these people who could have a dream and when I woke up, I could remember it, every detail, it would be that vivid. Now, I am not sleeping well enough that I am even having dreams. What is that about?

I know.....I need to go on a vacation. I need a change of pace for a while. If only it was that easy.

I subscribe to a few different MS news publications and journals and yesterday in MedlinePlus there was an article you all might want to read:

There are a couple of local...okay, semi-local things coming up over the next couple of months I thought I would post for anyone who lives in the Washington State, British Columbia, Canada areas that may be interested.

Just contact the Greater Washington National MS Society in Seattle, Washington at either 1-800-FIGHT-MS or (206) 284-4236.

Also, I don't have a link for this one right now, but when I get more information I will let you know.
Girls Night Out: April 27th in downtown Seattle
Dinner will be provided. There is limited seating available. It will be a night where women with MS, their mothers, sisters, & friends, can come together with 4 of the top female MS specialists in the Seattle area for a more intimate chance to ask questions, have dinner, and learn about MS, from a strictly female perspective (to include topics like pregnancy, hormones, and more)

Well, I hope you are all doing well and have had a great weekend. Please take care of yourselves and have a good week! :)

My dad has been having a difficult time lately. I know he has been frustrated with needing to have help, and he has been so impatient and grumpy since his surgery. I can understand how he feels because I HATE that people have to help me. I just don't think he always realizes just how grumpy he has been. There is nothing worse than the feeling of not being able to do things for yourself anymore. It is not everyday that it is like that for me. I still have days where I am fine to do things for myself. Each day is different, but on those days where things are bad and I just can't do anything and I just have to ask for help, that is the worst feeling in the world. So I get how he is feeling, I really do.

Anyway, I finally lost it and just told my dad that I understand just how it feels. It was not that long ago that I was able to go to school, work full-time, and live the life that I had planned for myself. Even with this illness, I planned to continue living that life. I DO understand how he feels right now, the difference is that in a few weeks, he will go back to being able to do everything for himself. My life will continue on this roller coaster ride until the day that a better treatment plan or cure is found.

His reaction to me was quite surprising. He said that there is not a day that goes by that he does not blame himself for what is happening to me. What??? That is Crazy!! Yes, he is my father, Yes, he feels responsible for me, just as I feel responsible for my son. That is not what he meant.

My father served in Vietnam and was exposed to Agent Orange during his tour there. There has been a lot of debate regarding the health problems that have come from the exposure of these chemicals. My dad says that MS is listed, along with the many other health problems that both me and my sister have had. I would be curious to know if anyone else's parents served in Vietnam and were exposed to the chemical Agent Orange. Could there be a connection between this exposure and the diagnosis of MS and various other illnesses? I am not sure.

I do know that it is NOT my fathers fault that I have MS, have had cancer, asthma, or any of my other health problems. I also believe that there is a chance that I may have had these illnesses even if he had never been exposed to this chemical. No one really knows what is to have happened, and we can't change that. I do know that it is NOT his fault, he was only doing the right thing by serving his country. For that I am VERY proud of him.

I would be interested in finding out however if any of you have parents who served in Vietnam, and if so, if they were exposed to this chemical. Who knows maybe there is some connection. I am so sorry that that all of these years my father has been carrying around this guilt, thinking that he is responsible for the health problems that my sister and I have endured because of his honor and duty to this country. He is a wonderful man, father, and husband. I am so very blessed to have him in my life.

I leave you with a little tune from 1969.....

It just occurred to me that I have had this blog for one month today. I have had 318 visitors already. I can hardly believe it! Considering as I child I never kept a diary or even as an adult have been able to keep a journal, this is pretty good. I find that this is a good tool for reaching out to others with MS, but also for keeping my friends and family updated with what is going on with me. It is a nice outlet and also a way to meet people, express myself, and be creative like I used to. There are so many nice people I have come in contact with who are also fighting this battle, it is nice to know I am not alone. I look forward to meeting new people, being able to express myself, inspiring others, helping to create awareness for MS, and especially supporting those people I have already met. We can do this together. Thanks for the continued support. You guys are great!

It is funny how your outlook on things change when you are no longer working. When I was working I looked forward to Fridays. It was the last day of the work week, the day you got paid, the beginning of the weekend. Now Friday is the day I do my injections. I SO do not look forward to that.

It has been a week since my last post. I have done a lot of thinking this week. It has been somewhat of an emotional week. My last injection hit me pretty hard. Just when I thought my body was finally starting to get used to them, this one really put me down. The pain was just as bad as it was the first time I took the Avonex. I had chills and fevers and no matter what I did, I just could not seem to get my body to quit aching. I even tried to soak in the bath, nothing helped. It lasted a lot longer this time too. Advil, nothing seemed to help this time.

The whole reason I take my injections on Friday nights is so that my family can help over the weekend and that way I can get Nathan to school, and do everything that needs to be done during the week. It is not a big deal on Saturday & Sunday if I can't physically get out of bed and he sleeps in, because there is nowhere that he MUST be early in the morning. Church doesn't even start until 1:00. To take the injection on Friday just does not create a problem like it would during the week when I need to wake him up for school. This is why I do it on the weekend. Also, because if I do have a bad reaction and need the extra help, my parents don't live far and my mom has the weekends off, so she can always come pick him up and he can stay at their house. During the week when she works, this is not possible. Isn't it fun always trying to juggle schedules, always having to have a back up plan?

Today was the MS Walk in Kennewick (about 15 minutes from where I live). Everyone was told to arrive sometime around 7 or 8 a.m. I am not much of a morning person, so we were there just after 8 a.m. It has been such beautiful weather lately (it was 73` just two days ago) and today it rained like crazy. But, rain or shine the walk must go on. It was very cold and so my son was not very happy with me. He was a trooper for the first part of it. We volunteered at the beginning, there was not a lot to do as I live in a small town and the biggest city is 3-4 hours away, so it was not the big setup that is often done in the big cities (booths by the drug companies, local news stations, etc.)

It was different. Yet, it was the same. It was all of us who fight for this very important cause, raising money and awareness to find a cure for MS. It was so inspiring to see that even in small town USA, all these people come together to walk for each one of us who suffer from this illness everyday, even in the pooring rain, wind, and chilling cold weather, they came, smiled, and walked. That is something that just touched my heart and makes me so very grateful. I am thankful to everyone who donates to the charities, but also to those who help and support me, and all people with MS. Today I have been truly inspired by each and every one of those people, and I will always be grateful for their contribution to our fight.

I was unsure if we would walk when I first signed up to volunteered because I was not sure how I would feel. I made donations as I could, but did not commit to walking because I just was not sure. It was so cold though that I thought I would probably be in more pain if I sat around in the cold and waited than if I moved from trying to walk, so Justin, Nathan, and I decided to do the walk. We did not make it very far before my legs started to cramp up and spasm. By this point we were all soaked and I was shaking from being cold. Nathan was getting grumpy and so I decided that we probably should go.

As much as I wanted to make it through the whole thing, my son complaining was stressing me out, which only made it worse, and I knew that when I got home I was going to have to take the Avonex, which gives me a lot of pain. Looking at it from a realistic stand point, I decided it probably would not do anyone any good if I got a cold or worse, the flu also. So, we left a bit early. I am glad that we went and did as much as I could though. Next year my goal is to have a team in place and raise a bunch of money. Then we can all walk together. That would be great.

After the walk we got lunch and a movie so that we could spend some much needed family time. Nathan, of course, was excited to spend some time with his dad, since he does not get to see him all the time. Nathan and Justin decided to rent a video game and I think once I take my injection and go to bed for the night (which will be soon) they will hang out and play Nate's game system and do the boy thing. That will be some good time for them. My plan for tonight: take a hot shower (it has been SO cold today), take my pills, my injection, crawl into bed, and sleep.

I hope you are all doing well and have had a good day, as I have. It has been a long day, but a good day. One with a purpose. It is nice to know at the end of the day you have done some good. :) Please take care. I wish you all the best.