Not only did I speak too soon, I think I cursed myself....it is 11 p.m. and I have just been home a little while now. I have spent the majority of the day in the hospital. What a day! Shortly after my last post (around noon) I went to make myself lunch and doubled over in pain....then got VERY dizzy. I thought to myself...I should go and check my blood sugar level, just to be on the safe side. Some times I have low blood sugars. Thing is when I checked it the monitor said 498. I about had a heart attack! So I called my doctor who said "that is WAY to high, it's not because of how you eat....you are being followed by a dietician, you eat more healthy than most people I know.....it must be your meds, call your neurologist and let her know and then go straight to the ER, and drink some water on the way". So, after calling Dr. Jung's office to let her know what was going on, my dad so he could keep Nathan one more night, and printing out my medication list.....I decided to check my blood sugar once more. This time it said 539. Off to the ER.

I spent several hours there.......so what did I find out. Well, my fever has broken, my blood sugar is normal (turns out I had a batch of bad test strips.....all that worry for nothing, geez!) but I have blood in my urine.....possible kidney stone! Great! Just what I need. One more medical problem. The ER doc explained that this could be what caused that severe pain I had earlier and that my renal function is normal so if there is a kidney stone it will pass on its own (because it is small), however there is always the possibility that I already passed it. I am to drink lots of water and get some rest! There is also the possibility that this is not a kidney stone and it is simply put MS.

To top it all off (kidney stone or not) it is my MS! She informed me that I am having a flare....double GREAT! The reason that I could not get cool enough the day before yesterday and then I could not get warm enough yesterday (spent all day in sweats) even though it was 97` is because I am starting a flare. The doctors did not want to start me on steroids right now (I am kind of glad about that....seeing how I really don't like how they make me feel) because of the other side effects. She said they want to wait it out for a few days and see if I come around. My last flare was pretty bad (lasted 2 months or more) so I really pray this is nothing like that. They are hoping this will be mild and more effected because of the weather changes. She also mentioned that if I am having a kidney stone that would cause enough stress on my body to create a flare or mild flare....so the hope is that if I can stay down and take it easy for the next few days then maybe this will pass and my flare won't be so bad! One can only hope!

I think that I need to call or email my neurologists office tomorrow though and just let them know about the symptoms I am having. I don't think that the ER contacted her office, so it would probably be best to just notify them. So, these are the symptoms I am having now.....headache, head feels heavy, memory issues (kind of feel like I am in a fog, if that makes sense), vision problems - not really double, more blurry even with my glasses on, PAIN especially in the right abdominal area, back, and neck areas, very painful pins and needle feeling in my feet, numbness in both legs and right hand, week under knees, weak legs, charley horse feeling in left leg, twitch under my left eye, and dizzy (not really room spinning - more like when you have low blood sugar). I seem to be having hot and cold flashes too (earlier at the ER I could not get warm (I had like 4 of those heated blankets on me) now I am hot again and can't cool down. I am not sure what the deal is there. Over all....I just do not feel well. It just boils down to MS SUCKS! Oh well....what can you do but live with it, right?

Well....I am going to go for now and get some sleep! It may be a couple days before I post anything as I am planning to follow the doctors orders.......take it easy, get some sleep, and honestly.....the longer I am on the computer (the more blurry this all looks) so I am thinking I need a bit of a break. :) I hope you are all doing well. Please take care of yourselves and have a great weekend! Don't worry........we all have these from time to time....I'll be back soon (and better than ever)! PMA - Very Important!

So, did I speak too soon? It is very possible that I did. I woke up this morning with a slight fever and one of those headaches (okay most likely migraine....I am not about to go outside or turn on a bunch of lights to see if I am light sensitive, etc.) that feels like someone has been hitting me over the head with a frying pan for hours on end. Thanks goodness for drugs, eh? Now...I am just waiting for them to kick in! In the meantime....I think today will be another day of trying to take it easy. More rest and relaxation will be in the cards for me today! I only got around to watching a couple movies, so I have more to watch.....and things seem to be cooling down outside, which is ALWAYS a good thing! I hope you have a good day today. Take care!

It will be nice to have my weekends back and having to take a day in the middle of the week to rest won't be so bad, but I am not sure that I really got my dose of Avonex this week. My injection did not actually cooperate!

I usually do my injections quite late because I was told that if I take ibuprofen about an hour before my injection and then again when I do my injection and take my injection late at night then it will help reduce my side effects (the thinking is that I can sleep through some of the symptoms). As my body gets used to the medication, this works better, but last night when I went to do my injection, complication! The stupid plunger (I think that is what it is called) on the syringe did not want to work. I am not sure if I am just too weak or what, but I did everything like I always do. My leg was nice and iced up...needle had been sitting out for an hour (room temperature) and everything was ready just like always. I got the needle in my leg and no matter how hard I pushed down on the plunger thinggy it would not bugde! I had to take it out and redo it like three times, talk about OUCH! It took every bit of strength for me to get that stupid injection in me (not to mention a good 1/2 hour or so to get the liquid pushed through the needle). I never want that type of experience again!

Needless to say I got the injection done and it was close to 1 in the morning by time I was able to finally get to sleep (after all that). I had a hard time sleeping so I was up around 6:30-7 this morning...which worked out okay since Buddy needed to go out anyway. I got up did breakfast and tried to go to bed....no such luck. I am not sure if I even got my full dose of Avonex though. I figured with that type of situation I would definitely have my usual side effects....I think that God must have been feeling sorry for me (watching me trying to get that stupid medicine in me must have been quite a sight) so He must be giving me a break as I am actually doing pretty good today! :) Just to be on the safe side (and seeing how it is about 97`...much better than yesterday) I figured I would take it easy today and stay inside. I am tired but can't seem to sleep (go figure...when you want to you can't, lol). I do have a headache, some pain (not too bad) and FINALLY I am cooled off. I am not sure if I am having chills or if my being cold today has to do with how low my A/C was all night, lol, either way I am not complaining since it has been hot out, whatever it is I am just glad to have a break from the heat! :)

My parents rented some movies the other day and so when I dropped Nate off yesterday they let me borrow them. They said the movies were really good! I also had a coupon for a free movie over at Blockbuster and seeing how there is nothing good to watch on TV during the day (isn't that sad...over 100 channels and nothing worth watching, pathetic) I went and rented Failure to Launch (chick flick, yes, supposed to be really good). Anyway, I am taking their word for it that the others are good and I'm staying in, relaxing, and watching movies! Also, since Nate is over at their house this gives me the chance to watch something that is not a disney movie, cartoon, or other kid movie/TV show! If you are a parent, you know what I am talking about. I love to hang out with my son, but sometimes those types of movies/shows get old. Hanging out with him, however...never gets old! So, here is the list...I am not sure if I will get around to them all today (good thing Blockbuster rents for a week now)...I have

Well....I hope that you are all having a good Wednesday and can take it easy today! :) Try and stay cool! Take care.

Another HOT day today! I spent most of the day inside with the air on. Nate had his appointment with his counselor and so we had to go out (and of course it had to be at the hotest part of the day...or at least it seemed that way). I am not sure just how high it got today but when I was on my way back from dropping him off at my parents house I saw a sign that said it was 109`. I think those signs are not quite accurate though because they draw more heat from the pavement...maybe it is, who knows. Once it gets much above 95-100 it all feels the same to me...TOO HOT! Supposedly the rest of the week is supposed to start to cool off (well, if you count in the 90's cooling off, lol). Summer is in full swing that is for sure.

The thing that cracks me up about the whole thing is that this MUST be due to global warming or something. It is not like I live in Arizona or something where you would expect these types of temperatures, this is Richland, Washington...right on the Columbia and Snaker Rivers. You would think it would be cooler than this...nope! Not even a breeze!

Nate is staying the night at my parents tonight and I am taking my injection (Avonex) on Tuesdays now! I guess we will just have to see how it goes. Hopefully it won't make too much of a difference to do it on a Tuesday, rather than a Sunday. It just means that instead of keeping my Mondays free (to heal from the side effects) now I have to keep Wednesdays open. More importantly I am hoping this will help Nathan to not be around. He is kind of funny sometimes about the idea of not being here when I am sick (even though he doesn't like to see me sick), poor kid is so confused. He wants to help me but it is hard for him to see it. I hate how this effects him. We will get through it together though!

Well...my Avonex has been sitting out for about an hour now (so it should be well to room temperature) so I am off to take my injection. I hope you are all doing well. Please take care. Have a good night!

After a very long weekend...one that was filled with tears and pain (both from the MS and just being sad) my son and I had a long talk about what is going on with him, why he is behaving this way. Of course...being a 11 year old, there is only so much I could get him to open up about, but at least we talked, and that is the first step!

Today was a much better day! He told me that he is scared of what this is doing to me and it is just hard! He is so afraid (which is very understandable) and even though he wants to be here to support me and be strong he doesn't know how to. I tried to explain to him that it was okay for him to be scared, that there is still a lot about this illness that is not known, but that he should be happy that I am doing better, right? He said things like well, yes, but it still scares him to see me when I am sick the day after I do my injection (Avonex) because he is always afraid I might have another relapse or something because of it. I explained to him that the purpose of me taking the medication was to try and help me not have as many relapses and that this would help me to feel better. I think this made him feel a little bit better, but he is still bound to worry....he is my son and it is only natural to worry about the people you care about.

So, I did not take my Avonex last night (I normally would take it on Sunday's). Nathan goes to my parents house every Wednesday to do yardwork (he mows their lawn) and so I talked to my parents and we have decided that Nate is going to go to their house to stay the night every Tuesday night (thinking that it is so that he can be there bright and eary to do the lawn Wednesday morning) but it is going to be so that he does not have to be around when I do my injection. I am going to start doing my injections Tuesday night while he is at their house and then the after effects (when I am sick) will be on Wednesday while he is working in the yard. This should help him to not worry so much...at least that is what I am hoping for! So, starting this week, my injection day is moving to Tuesdays!

I hope you are all having a good day! It is HOT here! It was 106` earlier and at almost 7pm it is still 100! Thank goodness for A/C.....now having said that, I'm off to take Nate to a baseball game outside in the heat. I think I must be loosing it or something, lol. Fortunately I have lots of water to drink and a cool tie on my head! I hope you are all well. Take care!

I am so sad right now! I love my son more than life itself and lately things have been so up and down. Our house has been in such turmoil, like we are at war and peace! One minute we are happy and doing our best to get along and the next fighting. I just don't get it. We are so incredibly close and have always gotten along so well. I don't understand what is happening to us! The thing that is so frustrating about it is that he is only like this with me. He is so good, helpful, and well-behaved when he goes to my parents or anywhere else. So, why doesn't he behave at home? I know he has a real hard time with my having MS. He HATES it! I know that he loves me and is sad that I am sick but I think it is just hard for him to really understand all of it, maybe that is why he acts out......he doesn't know how to control his emotions!

Problem is that lately I can't seem to control mine either. I am not sure if this is from the medication (Avonex) or if it is from the MS but I just can't take it anymore! My emotions seem to be all over the place and it scares me. From a logical standpoint I can understand why he must say some of the mean things he says to me and why he is pushing my buttons (he's just acting out his own frustrations). I know that I need to just ignore him, but there are times that I have to just go in the other room and cry because I just can't handle what he says.....I can't help but take it to heart, when I know he doesn't really mean it. How do I get better control over this? That is the question isn't it? I have tried to just walk away, go in another room, separate ourselves. I hate to do that, we should not have to, we should be able to just get along like we always have before. Maybe it is the combination of where I am in my illness and his being out of school for the summer so him seeing more of what is going on. I just don't know.

He started going to counseling a while back and I don't think it has been long enough to do anything yet. Maybe this has a part to do with it. He suffers from anxiety and PTSD (from a trauma early in his childhood) and maybe going to counseling and dealing with my illness along with the idea of having to talk about those things might be enough to do it. He just doesn't want to talk to me, and he has always talked to me about things. Maybe it is the age.....he is becoming more independent. All I know is that somehow some things need to change. I don't know how we can live this way. We can't live in such turmoil! It's not like everyday is a bad day, but when we do have a bad day....it's really bad and they are becoming more and more.

I would do anything to be able to fix this....only I am not sure how to fix it, or if I can. Some of this may be him needing to accept what life has handed us. I do know that I need to find a way to get my spend down taken care of though, because I don't know how much more of this I can take. It really does scare me! I have never had to deal with depression before and I am depressed. I have always been an upbeat and optimistic person, I have to continue to be positive.......... sometimes it is so hard, but I am trying! I just keep telling myself everything will be okay. Everything will work out. Hopefully tomorrow will be a better day! :)

Today was one of those days where I just could have stayed in bed all day! That is not what I did, but it did not start good. I definitely woke up on the wrong side of the bed, if you will and was running late (which seems to be an issue lately). My fatigue is ALWAYS a problem and some days it takes every bit of energy for me to pull myself off the bed for basic things (showering, hygiene type things) only to go lie back down because I feel like I was lucky to have made it through that. I thought that my fatigue and over all pain was getting better, or at least it seemed to be over the last month but this past week or so I have been in a lot of pain. I have been having a difficult time walking and even being able to pull myself up to stand up and then when I do stand up I feel like I will just fall over. The upper part of my legs especially hurt but it is like the rest of my body just doesn't have the strength to even pull me up (really sucks). Oh, and to try and use the stairs...nightmare! This is why I eventually need to move into a single story (downstairs) apartment.

Anyway, it took me forever to get ready this morning and I was supposed to have Nate over to my parents at 8:30 this morning so that I could leave for the MS conference in Yakima (just over an hour away) that started at 10. My dad calls me at 8:20 and says "Do you know what time it is, you need to get here, you're going to be late!" and starts lecturing me. This did not help at all. I was already having a bad morning and it took all my energy to just get out of bed and ready....I did not need him to lecture me, so I told him that and hung up. I really wanted to say something along the lines of "It must be nice for you to have a body that allows you to get up and out of bed in the morning! When your legs don't work and you have the level of fatigue I do everyday, then you can lecture me." Of course, I didn't...I just hung up. I don't think that people (even in our own families) really get it though. It's not like we are just tired for the heck of it (cause we were out all night or something) or being lazy. We have a medical problem that actually creates these issues for us, and I am very aware of what time it is pretty much all of the time because anymore I seem to always be running late and in a hurry because I just can't get my body to cooperate. There is ALWAYS fatigue for me, but some days there are other things too....pain, numbness, weakness, spastic legs, I could go on and on. Each day is different and I really try not to focus on that...I try and focus on the good things about the day and trying to just go on. I really don't need more reminders of what is happening to my body or to be made to feel bad because of something that I can't control! It did not help that Nathan was being difficult either (but I am sure that some of that was him responding to me).

Fortunately, my parents are very supportive when I need help (I think there is just some things...like above that they maybe don't understand about this illness) And, I know some of the problem is that I need to talk to them more about this stuff, but as much as I don't mind talking to them about MS in general....I really hate to talk about how I am doing when things are not good. Sometimes it is almost like they just don't want to hear about it (which I am sure is not the case, I know they love me and care about me) it's just sometimes it seems like I am being a burden. Sometimes I get comments like...you need to toughen up, you used to do so much better in these situations, what's the problem? Well.....I have MS and it can mess you up both physically and/or emotionally. They are right, I can't handle stress like I used to and I now have depression to add to my list of health issues. I would love to be as tough as I used to be, but lately I am an emotional mess (whether it is irritable or just sad) it is just one more thing to learn how to deal with.

So, I called my mom and she had my dad come and pick Nate up so that I could make it to the conference on time. I made it on time (it was about Active Living with MS) and I was able to get lots of great information (which I will get posted as soon as I am feeling a bit better). I was not sure what to expect, but was very happy with the conference. It was hosted by the Multiple Sclerosis Association of America (MSAA) and I had never attended one of their events. There were a couple doctors from the Seattle area in to talk to us about why it is important to be on one of the MS medications and what we can do to feel better (EXERCISE)! Also, Wednesday I went to a MS conference hosted by the NMSS on MS and Genetics. The doctors were unable to attend, so we watched a video that basically told us everything we would have gotten from the docs (only without the Q&A at the end). This conference ended up being a great thing for me to go to. I got to meet up with Erin from the Greater Washington NMSS Chapter (based out of Seattle) who by the way helped me to get my gym membership (Thanks Erin!) and we talked for quite a while.

I have been doing a lot of thinking lately and this is what I have come up with. There are quite a few MS foundations (and other non-profits) that have been established to help people with MS. The thing about it is that most of them are focused heavily on research and finding a cure (which is great, that is the ultimate goal!) but the reality is that this illness has been around for years and it is still a very unpredictable illness. We would love to think that there will be a cure in our life, but don't know for sure. Also, if there is a cure...what would that cure look like? So, with me starting to feel better (much due to working with the personal trainer, the dietician, and getting in the pool), well until this week that is, I started to think about who is focusing on helping us to have a BETTER QUALITY OF LIFE so that if we do find a cure our bodies are as healthy as possible, therefore maybe we will be better candidates for that cure (and our bodies won't reject it) or if we don't see a cure during our life (as we know one day there will be one...at least we have to remain hopeful) than we will have lived the best possible and healthiest life we could have, even with this illness. Why should having this illness mean that we have to sit at home and wait for someone else to find a cure before we can live a good quality of life? That doesn't sound right to me...and personally I am getting a little sick and tired of hearing that is how it has to be.

So, then what? Well, the NMSS has some resources...but not a lot (they are trying really hard to get more and do better however, so push them for what you need) and so I thought maybe I would look into what it would take to start a non-profit, so I did just that. I looked. Problem is that is can be very expensive just to start a non-profit organization and it can be a very long process (anywhere from 6 months to 3 years to get started). Personally, I don't want to wait another day let alone 6 months to take control over my MS and no one should have to. This is where the NMSS and Erin come in. I talked to her about my ideas and she loved them, some of them they have been trying to figure out a way to make happen and so she was really excited to have me come on board. I am going to be a MS Ambassador for the Central Washington area and work to help get some of these ideas in to action! This way, if we can be successful in our chapter...there is a lot more pull to get it to all MS'ers (because they are everywhere) and when they see programs working in one area, they tend to try them other places too! And, seeing how I can never stop at just one thing...I had to throw in all of my rants about SSDI. They have a woman named Ruth who works to help fight for MS'ers when it comes to these types of things (government policy, etc.) Erin is going to get me hooked up with Ruth so that I can be a part of that committee too! I am really hopeful that maybe we can get some great things accomplished together. It will take some time and effort, but the end result will be worth it!

Well, the day ended with me driving back to the Tri-Cities to pick up Nate and getting him home in just enough time for his friend (Kolton) to come and pick him up for the Dustdevils opening game (against the Vancouver Canadians....Dustdevils won!) He had a blast and was so glad he got to go. My night has been quiet with me just relaxing and trying to feel better. I have not been sleeping well lately either, so hopefully I can get to bed early tonight and get some good sleep. Maybe then I can wake up tomorrow and have a good day.....feeling better and with more energy! That would be nice.

I hope you are all having a good Weekend. Take care!

Link...Don't loose hope, everything will be okay! :)
This is for you Dave!

It is bound to be a quiet and hopefully relaxing day today (note the slower, chilled tunes today!) seeing how yesterday was my LAST time with the personal trainer. :( Now I am all on my own, which will be okay...I just hope that I can remember how to do everything he taught me. I think maybe I should see if I can get him to write everything down for me! That would be a good thing, besides he told me that he wrote down which weight machines we used and they are kept in a file at the gym that I can pull anytime I am there to do weights...so why not have him write down the rest of the exercises, right? It was not as difficult of a work out as last time (hopefully this means no real problems for my right arm, that would be nice) but I did have the wobbly jello legs going on by time I got home. It's all good though! I am so glad that I have been given this opportunity to get to a gym and do something to take control over my MS.

Nathan had a great time over at Grandma & Grandpas house and was even more excited that the grass has come in enough now that Buddy finally got to go over there too! They had a blast running around in the back yard, playing. It was really fun to just watch them. That is the downfall of being in an apartment, no back yard for Buddy to run free. Fortunately, he is mainly an inside dog, so going to the park and for walks, some days even just out several times for the bathroom is enough for him (but honestly, he's gotten a bit lazy and so this was really good for him) ;)

I got a phone call today from Mary at MS Helping Hands! She basically told me that they may be able to help me! That would be a relief. There is still no guarantee of course, but she told me to gather up my medical bills (for my spend down) and mail them in so that they could process them along with my application. They can help for up to $1000 which would be great (then I would only have $536 to go) before I would have insurance again. That would be such a blessing! Really nice woman and I am so grateful that they are considering helping me. This should buy me some time (if they are able to help...I know that it is all based on donations and the amounts available at the time)!

I also got a letter in the mail from the Patient Access Network today telling me that they were unable to help me at this time. They have already given away all of the donations that came in the other week and so my application is on hold again (until more donations come in) but who knows....maybe someone will donate more money this weekend (if you are reading this and able, go donate to both the Patient Access Network and MS Helping Hands -->> links to the side) every cent will help an MS'er in need!

I just have to remember that I can't loose hope (or leave hope as the song is called, lol). There are a lot of people who need help and only so much money to go around....hopefully I will get the help I need from MS Helping Hands now and maybe in 6 months when my next spend down hits...the Patient Access Network will be able to help. I just keep telling myself....if I can just make it the two years until Medicare kicks in then at least I will have some coverage and it won't be so bad. I just have to hold on until then! Two years....that should go by fast, right? In the meantime....I will continue to fight by trying to stay as healthy as possible and reaching out to those in the government. One of these days they are bound to get sick of me and do something! :)

I hope that you all are having a great Friday. Take care! :)

I know I have been talking a lot lately about how important it is to speak up about what is important, about what WE need! Well, I am here to tell you that every voice matters and I urge you to contact your representatives. It really does work. As most of you are aware about a week ago I decided that enough was enough and I needed to vent about my feelings towards this very flawed system we have here in the US (in regards to SSDI & medical coverage). I got on my soap box and got quite the response! I also emailed my congressman, Doc Hastings and did some further research which led me to The National Partnership for Women & Families in Washington D.C. (they were a big part of getting the FMLA passed through congress). My thoughts were that if we could duplicate what they did and make enough noise; maybe we could make a change.

The other night I got a phone call from Dixie over at Congressman Hastings office. We talked for almost 2 hours about my ideas in regards to the SSDI system and what changes needed to be made, how this affects people with MS (and all disabilities) and more! She was very interested and urged me to continue to write in to the various representatives. She gave me the names of other representatives in the area to write to that could also help to make a difference! She also took down my blog address so that they can check in from time to time to see how things are going! :) Then yesterday I got a call from Kiva at The National Partnership for Women & Families in Washington D.C. She was very helpful. We talked for about a half hour where I just filled her in on what I was trying to get done. She gave me the name of a book that would be good to check out.... Conflict & Compromise by Ronald Elving. It focuses more on the FMLA but really is a breakdown of what we can do to change the system and how congress makes laws! She also took my blog information. She then called me back later in the afternoon with the name of a woman who is an advocate here in the State of Washington. She works with the Economic Opportunity Institute and they fight to try and find solutions to problems from a state level.

It is amazing what can happen with just a letter or a phone call! I would urge each one of you to contact your representatives in your own state regarding these issues. The reality is that any working American at any time could be affected by this flawed legislation. Remember, if you are found to be medically disabled.....you WILL have a 2 year wait for any kind of medical coverage (just because you worked and paid taxes). The only way this does not apply to you is if you have not worked or worked enough to qualify for SSDI (which most working Americans will fall under the SSDI range). This is not a just system and MUST be changed. It is not just about those of us who are on SSDI now (as it may take 2 years or longer to get the system changed) it is also for every other working American out there (and every potential working American...our kids and their kids) who one day may be faced with an unexpected change in their life. Life brings things that we can't control. Just as we have no control over our having MS...this legislation can help protect every person who may be affected by other unfortunate circumstances (other illnesses, car accidents, etc.) Life is unpredictable, this is something we know! Do your part....contact your representatives, obviously it does help! My one letter and phone call did, so will yours!

Do you ever feel like if you say something out loud you are going to jinx yourself? I don't believe in those types of things, but maybe I should, lol! I have been doing so well lately and just this past week I made a comment to not one but two different people that I am feeling better! I could not leave it at that though. When asked about how I am doing with my meds....I mentioned that I was told it could take 6 months for my body to respond but I think I am starting to respond because I have been taking Avonex for about 4 1/2 months now, and I am not sick for as long as I used to be when I take the injection. I used to be in bed sick for a good 3 days when I first started, now I am only down for about a day. This is much better! I had to open my big mouth didn't I? Sunday rolls around and I take my injection (which for some reason hurt like hell....and they never do), I got the stupid aches, pains, chills, fever, the whole bit! What the heck was that all about? It is Tuesday and I am still not feeling well!

I wonder if it has anything to do with the exercise that I did. I would not think so considering usually when I do exercise I feel better, not worse. Granted, I do end up in pain (what's that saying...no pain, no gain) but that is what my doctor's told me needed to happen. I am in an interesting situation, because of the MS & the Osteopenia I have to exercise in a way that will push my body to the point that I can not only build up my strength but also to rebuild my bone mass. In order to do that, I will be in some pain......the trick is to do it in a way that won't create more problems for my MS. Friday I went and met with my personal trainer and worked my butt off. I was there for almost 2 hours and let me tell you what...I had a burst of energy after that I had not felt in years. It was great! Saturday I was even okay (pain was there but tolerable...mainly in the abs), but come Sunday I was in so much pain I could barely move my right arm. I am not sure if this is from the exercise or the MS. I guess this is where things get a little complicated.

That stupid twitch that I get under my left eye is back. It has been there off and on for about a week now and over the weekend got really obvious, and then yesterday I started getting the sharp pins and needles in my feet! Not to mention I am having a bit of blurred vision (yes, even with the glasses on, new glasses). My memory is a bit funny and I have been having headaches ever since that dream of mine. These are all things I get with my flares...so are these things a sign of something to come (MS flare), or is it just a coincidence because I worked my body too hard? I am hoping that it is just a coincidence. Until I get my insurance stuff figured out, I can't afford to have a flare, because the reality of it is that even if I do end up having a flare there is nothing that I could do except to just deal with it, sleep through it, etc. I would not be able to go to the doctor or take IV steroids or do anything else because of my whole SSDI insurance situation. This is the problem! Whatever it is, hopefully it will pass soon. I always find it interesting how MS seems to creep up on us when everything is "finally" going good for us. Why is that?

I do believe that the exercise and diet it working to make me feel better, however. It is going to take some time, maybe a long time, but I feel like it is up to me to take control over my MS. With each time that I exercise I may have to take a couple days off to rest and be in pain before I can exercise again, but it also gives me a renewed energy because it does help with the fatigue. It makes me feel like I am capable of doing something to help myself fight this illness. That is something! I think that the more I do, the more body will get used to it and then after awhile I won't need those days in between to rest and be in pain because I will have retrained my body to handle it. Maybe this will be a big key in helping to control my illness now so that I can be as healthy as possible and have the best quality of life I can. After all, that is what matters.

I hope you are all doing well. Please take care of yourselves.

Today we are going to celebrate the life of the greatest man I have ever met....my father! He is such a wonderful example to me! This past year we almost lost him. He had a stroke and then underwent two surgeries. Fortunately he is doing much better now! :) I have been very blessed to have such a strong, caring, loving man in my life to always be there to guide me, protect me, and teach me. He is my best friend and hero! I am truly a daddy's girl. When I was younger, I wanted nothing more than to be like him, and that kid following in his footsteps is still somewhere inside me. It is funny, because not much has changed. We are still as close as we ever were, probably more! I am so proud to be his daughter. Thank God I will have to opportunity to dance with my father again.
Dad, I love you! Happy Father's Day.

Do you suppose that our dreams mean anything? I have heard many different things in regards to this. I have heard that our dreams reflect what we just watched on TV (that is not the case here) or that they come from our deepest subconscious so they are like little subliminal messages about what we are thinking about or something like that. I know there have been cases where people have had revelations through their dreams (have you read the Bible?), and some people just seem to have silly or stupid dreams that most likely mean nothing. Other people claim that they don't dream or don't ever remember their dreams. I just don't know....it would be interesting to find out, however.

I just got up a bit ago...and my head still hurts! I had a very disturbing dream last night. In my dream I died, not from MS but I was murdered (actually shot in the head, which I suppose may be why I woke up with a headache?) I don't know. The dream itself was not real scary or disturbing....I just happened to be in the wrong place at the wrong time (type of situation). The longer that I am awake the more the dream fades from me. Really I only remember that I had stopped by this house (a familiar place, some friends I suppose) and when I walked in (why I went in I am unsure....it is not like I just go walking into peoples houses, hmm..strange), I just happened to walk in on a robbery taking place. Other parts of the dream seem to be more of a blur....I remember the house, what the outside grounds looked like, and that there were 2 men (both white in their mid-30's or so). I also remember that we were able to get some children to escape and the men were talking to each other (only I don't know what about - how strange is that?) Then the ending of the dream is pretty clear. I remember being in a van..they were taking us somewhere and when they pulled over I had gotten someone's attention (which only made them more mad). I was trying to find us a way out of the situation. Then one of the guys decided he had had enough and shot us all. Only I did not die, which really made them mad so he walked up and shot me through the top of my head.

The strange thing is that although I have a bit of a headache this morning....I did not wake up right away (I have had dreams in the past where it seems to me that just as something bad was to happen to me, just as I would get hurt or whatever, I would wake up. This was different.....I continued to dream, only there was not really anything to dream. It was like this blank white area for a minute or two and then I remember dreaming about Nathan, going to him and telling him everything would be okay. Telling him that he needed to go live with his grandparents now. It was not until after that that I was able to wake up. Maybe it was the need for closure...I don't know. Strange right?

I guess it was just one more reminder of how fragile life can be! You just never know when it will be your time. I guess the thing about it is that we just need to go and live our lives and not worry about everything else. We have NO control over what will happen from day to day (MS or not) and so I am not sure what (if anything) this dream was supposed to mean, but it does remind me just how precious our lives are. Any one of us (MS or not) could go out to our car today and be in a fatal accident and that would be the end of it. We could go into a mini-mart to buy a soda and have some idiot come in to rob it while we are there....only for us to be the one to end up shot and killed. The thing about it is that you just never know when it is your time...so we have to continue to live our lives, and with the best quality of life. At least that is what I have been thinking about since I woke up because it has been one of those dreams that is just sticking with me. Do dreams mean anything? I don't know....and if they do I don't know how to interpret them, but I do know that I have to continue to fight my battles and live my life.

I want to be able to do things NOW...not 10 or 15 or 20 years from now when "they" may or may not have a cure. That just doesn't work for me. I have spent a lot of time trying to get my health in order and I can't give up....$1536 every 6 months, that is a lot of money but there must be some way to raise that money if I can't get help for it! I refuse to be told that I have no options....that just DOES NOT work for me! I have worked too hard and made too many sacrifices already because of this illness.....I am NOT going to give up on my health because the government's policy is flawed! This is NOT an option.

I am meeting with my personal trainer today (they were kind enough to throw in 2 extra sessions considering the current circumstances) and then I will have one more time to work out with him before I am on my own. I am also basically on my own with the nutrition stuff (but that is okay considering I already was eating healthy, just not enough...I am doing better now, it is still a struggle some days, but I am eating more). My nutritionist has been sweet. She told me that anytime I am in the area I can swing in for a quick weigh in (to check and see how I am doing) for free! At least until I can get some of the insurance stuff figured out. So, I feel like I have been very blessed! For the most part I am able to continue doing the things I need to...now I just need to raise that money in order to obtain the medical coverage before my appointment with the doctor next month (and before I need to order my meds at the first of the month). If you have any ideas, please let me know. I am open to any and all suggestions!

I hope you are all doing well....and getting the sleep you need (hopefully without any crazy, strange, disturbing dreams, lol). Take care and have a good day. It's Friday, go do something!

I picked this song because I have decided this fight is too important! Unless you have been here (for those of you who are also fighting this fight you know what I am talking about) you don't know what we go through! We have EVERY right to have the best quality of life we can! I have decided that the time for change is NOW and if it takes me my whole life than fine, at least I did something, at least I tried! I urge you all to make sure you are registered to vote and write to your representatives....all people with disabilites (MS or not) should have equal benefits! There is power in numbers! We CAN make a difference. Remember, this is just not for us...it is for every American. Our children, grandchildren, sisters, cousins, etc. Life is short & any person at any time can become sick or disabled & need to claim benefits that we should have the RIGHT to claim (after all when we worked, we paid in to those very benefits...for that purpose). Thanks.

Just to let you all know...I made a quick change to the comment section! I was getting spam on the comment section of another blog, so I decided to turn on the comment modification section. Please don't be alarmed as I welcome and appreciate all of your comments! I have not had any problems on this blog, only I prefer for it not to become a problem...so I figured I would take care of it beforehand!

I hope you are all well. Have a great day and please continue to leave me your comments! :)

Okay...I am sure this is just a GREAT BIG coincidence, but last week the Patient Access Network was closed for their MS fund and MS Helping Hands had just over $3000 available (listed on their website Thursday). I sent in my application hoping and praying that just maybe I will get some help (I still am!).

Anyway, at the same time I decided to put a link to each of them off to the side -->> I figure that if there is someone out there who happens to read this and is able to donate to them or one of the other foundations/charities than great! I then posted a little bit about them the other day encouraging people to go and donate. Well guess what?! The Patient Access Network received donations over the weekend and the MS fund has been reopened and just a few minutes ago, I checked MS Helping Hands website and their funds available are up to $11245!

The reality is that my blog probably had nothing to do with this...but if it did, way to go people! Keep up the donations. Every cent helps. There are a lot of MSer's out there who need help, so I thank you for each one of us!

This is the first week my son has been out of school. It has been kind of strange....not having to get him up early for school to get him ready. It has been nice. Also, the weather has been a bit off for this time of year. It has been warm...in the 70 degree range, but very wet, lots of rain! Needless to say we have been staying inside more because of the damp weather...which has been nice to just hang out with Nate. We rented Glory Road and The Pink Panther.




I am not so sure about the Pink Panther...but Nate thinks it will be really funny and really wants to see it, I guess I will know soon enough. Nate is happy to have some time to play his playstations (he has both a ps2 and a gamecube) again. It has been awhile since he has played his games. He doesn't have a lot of time during school hours because he has homework, etc. to do and on the weekends lately he has been out riding his bike, swimming, and we have just been busy. I think today may be a little bit of a nicer day....at least it is not raining yet! :) I don't mind the rain actually, it makes everything outside look so nice (afterwards that is). The grass is so green and the trees....smells like you are up in the mountains. That is something I miss about Utah, as long as there was not a wind to go along with that rain because if there was then you would get that nasty lake smell....yuck!

I got a call from MS Active Source this morning and they are sending me 4 complimentary doses of Avonex. They said this is because I am about to run out (I have one dose left) and since I have been working with their research team over the last couple of months trying to obtain alternative funding sources for my deductible (spend down)...they wanted to help buy me some time until we could get some things straightened out. That was nice!

Today should be somewhat of a busy day. Nate has left to go work on grandpa's yard! (It is almost 10 am now and he has just been picked up) He will be gone all day working with grandpa, which will be good for him. It will be good for him to stay busy! I am taking advantage of this time to go and do some grocery shopping and run some errands.

I hope you are all well and having a good day. Take care!

What a great way to wake up! I got a call this morning from Jawoda at Biogen's research group notifying me that the Patient Access Network Foundation received some donations over the weekend towards the MS fund. I called right away and sure enough....they are resuming the application processing! Hopefully this means that my application will go through and soon enough I will have insurance coverage again. I can always hope! :) I was also notified that there is a good possibility they have found a way to get my Avonex covered for the next few doses (maybe a month) until we know more about what happens with my insurance.

It always amazes me how things just seem to work out! I know there are not any guarantees, but at least I know that there is some hope now! I started to loose hope that everything would work out and I was starting to get discouraged....I can't do that, I have to continue to fight!

I have posted links off to the side for people to click and donate (if you are able)! These foundations are so important. They do such wonderful work in many different areas with regard to MS (and some of them help with other illnesses too). You will notice under Donate/Support for MS I only have 2 foundations listed. These are the two foundations that provide financial assistance to MS patients who need assistance in a variety of ways....(with rx help, doctors bills, underinsured, financial help, etc). I also asked to please donate to one of the other charities listed below if possible (under MS Links). These foundations are a bit different. They may or may not help with financial assistance (for example the NMSS does help with financial and also areas like fitness scholarships, etc.) but they also accept donations that go directly towards research and finding a cure! This too is a very important and necessary area to donate your money too. Ultimately the goal is to find a cure! Please remember that anything you can do will help out, even a small donation is appreciated. :) Every cent counts! Thank you.

Phase II study out of Canada shows positive results in delaying disease progression for five years in progressive MS patients!

Could Vitamin D really be a wonder pill? Research is suggesting that getting more of this pill may help many illnesses...including MS? More research needs to be done, it should be interesting to see all of the results! Have a read.

This system we have is flawed! It is not right! I understand that there are a lot of sick people in this world and the government can't afford to pay for each one of them, but there has to be a better way. We would not be on SSDI if we did not have a medical reason to do so, so why is medical not provided right away? A 2 year waiting period is not acceptable! I would not care that I have to pay a deductible, but when your income is cut in 1/2 or more because you become disabled and have to go on to SSDI to begin with and then they want you to pay another 1/3 of that just to obtain medical...that does not leave you enough to support your family. That is poverty! We deserve better than that! That is not why we worked so hard and paid in taxes, so that when we became disabled or if something happened to us we could be at poverty level. That is just NOT okay!

It seems to me that the system needs to be changed. I just don't know where to begin in starting something like that. It is not right that there are hundreds, maybe thousands of capable people out there living off of our welfare system because they don't have the qualifications to obtain a job, or because they are lazy. I am not saying every person on welfare should be thrown off...I know that some states have systems in place (Utah did it for my sister when she applied for her disability) that you go on welfare while your application is in, but once you are approved they take your lump sum to pay back what you got for welfare, so at least this gets paid back. I am sure there are other reasons someone would be on welfare that may be justified, I just don't know. I just have a problem with the number of people who are perfectly healthy and capable of getting a job and don't, but soak up the resources that prevent people who actually need them from getting them. This just pisses me off!

Like I said though the system is flawed! It does not seem to me that it is right that someone who lives in NYC on SSDI and is single gets the same amount as someone in S. Dakota who is also single. Obviously the cost of living in NYC is much more expensive and so for the system to be fair things like cost of living should be taken into consideration....they aren't! This goes the same for SSI (although it does not matter if you are single or not because there is just a flat rate for SSI. It doesn't matter how many people are in your family). For SSDI you can claim your spouse and/or children also up to a specified amount, so there is a little more you can get if you have a child or if you are married, but it still is not much and they do not take into consideration anything like cost of living. Also, if you are awarded SSDI you do not qualify for medical coverage for 2 years and then you only qualify for Medicare, which is not the greatest coverage (but, it's better than nothing). SSI people automatically get Medicaid coverage which covers them at 100% (depending on the state they may have a small copay). This piece of the system I have a hard time with also. I think it is great that these people who are on SSI have Medicaid coverage. They did not ask to be disabled and it is not their fault they were unable to work and pay in taxes, however, for those of us who did work and pay in taxes, we should be eligible for medical also and immediately. There should be one system. The system I think should be evaluated based on a number of issues. They should take into consideration the illness, type of disability, need, cost of living in the area, income, family composition, if any health care is available (some people may have coverage available through a spouse but refuse it because they have Medicaid/Medicare through SSI/SSDI), etc. In order for the system to work properly it has to be based on each individual situation. You can't take a group of people from different areas with different disabilities and lump them together as one situation. That just does not work! My problem is...where do you even begin changing such a flawed system? I have no clue!

I have tried to contact my state representatives...that seems to do nothing (they were nice enough to give me the phone number for my drug company - Biogen, however, lol and tell me tat they get these call all the time). I even called a lawyer friend of the family that specializes in SSI/SSDI claims and was told that there is not much that can be done to change the system except to contact the state representatives, which I had already done. Talk about frustrating. How do you fight such a large system? I have been thinking about this a lot over the last couple of months (kind of in the back of my mind) because I feel like there should be something that can be done! I mean, if the state representatives office "gets lots of these types of phone calls" and even have the drug companies phone numbers on hand...that makes me think I am not the only one who is frustrated with the system. I am not the only one who has worked, paid in taxes, become disabled, only to be thrown into a system that doesn't care enough to want me to be able to maintain my health or support my family....after I worked to pay into that very system. So...I have been thinking....how did the people come together to fight and get the Family Medical Leave Act of 1993 created? That is what we need to do! That happened out of Washington State (where I live) you know. Somehow I need to find others, and we need to come together and fight this! I just need to figure out how to go about doing that...and the reality is, it won't fix my current situation. I will probably have used up my full 2 year wait period and will already be on Medicare by time we could get anything accomplished (if we were to even get it done) but if we could get it done...just think how many other hard working MS'ers who are currently paying taxes that may one day have to go on SSDI it could benefit! Not to mention all the others with other disabilities. That would be a great thing!

It has been a quiet weekend at my house. Nathan left last night for Boy Scout camp and won't be back until later tonight. I am really happy that he has gotten involved with the Boy Scouts. I think it will be a great opportunity for him, not to mention he will just have a lot of fun!

I have been doing a lot of thinking lately. I am trying to figure out how I am going to make everything work.....maybe this is why I have been having headaches? I am thinking too much? No, I don't really believe that, but it sounded good, lol. I sent an application into MSHH yesterday. It would provide help up to $1000 towards my spend down, if approved. The application process can take 45 days. I am trying really hard not to give up hope but the reality is that I am going to have to go without my medication for awhile. I just don't see at this point how it can be avoided. I have two doses of Avonex left (one of which I will take tomorrow) and am quickly running out of my other medications. I have applications in to several places, but it all will take time. I am sure these companies get hundreds of applications a week....so now I just have to wait and see what happens, if I will be approved and if so for what kind of help (based on the type of application...insurance coverage, rx help, etc.).

I am worried about what all of this means for my health. I know it will only be temporary because eventually (even if that means in 2 years when Medicare kicks in) I will have the coverage to go back to my doctors and get back on my medications. What does this do to my health and my body in the meantime? Will my illness progress? Will I become more disabled? What about my son? This is all scary to think about. I have so many mixed feeling about all of this. There is the part of me that wants to fight like I always have and then there is a the part of me that is so exhausted I am not sure if I have any fight left. I try really hard not to be upset or angry about my situation, I am not alone! I know there are others out there who are also in this situation, either because of MS or some other disabling illness. Sometimes I can't help it. Sometimes I can't help but to just want to scream or cry.

I feel like I have done everything in my power, everything I knew how to do to try and secure a life for myself and my son, and it just has not been good enough. I worked, paid my taxes, paid my bills, saved what little money I could (which has almost all gone to medical bills, by the way), I have an education. I did everything I could, but my illness, just like many others with MS hit before I could get my life situated in a way that I had a good amount of savings for my life. I had enough to support myself for almost a year while waiting on my SSI/SSDI application, and that is more than most people have these days.

Don't you all just hate the ups and downs of this illness? I know I do. I really do try to be positive and try to stay upbeat but sometimes it is so hard. Sometimes the reality of it all just grabs a hold of you. I don't seem to have a lot of energy these days, my fatigue is great. I have had a lot of pain lately and it seems that I almost can't get out of bed, I am weak, not as much physically but that I am exhausted for some reason. Which is strange since I have not really been doing anything, nothing that should make me tired and/or exhausted at least. I don't think that I am sleeping really well. That may be part of the problem. Don't get me wrong...I am sleeping, just not a restful sleep. It seems that I am getting enough sleep, but when I wake up I am still so tired, exhausted. It is like I have not even slept at all. I have even been having moments where I am so tired I can't keep my eyes open or I fall asleep in the middle of something, talking to my son, etc. Why am I so tired? I always have fatigue, but usually only when I am coming down with something does it get this bad. I wonder if the heat has anything to do with it? Whatever it is...I wish I could just get some of my energy back!

I am feeling a bit isolated and anti-social these days. Which is strange, because that is not my intention at all (or my nature, I used to be the life of the party, lol)...it has just kind of happened that way. It seems the only real contact I have had (besides with my son, is with my parents). That is not good. I need a life again. That is the worst part of this illness! How do I regain my life? I think that is the real question of the day! When you don't have the energy from day to day to do things and your body is weak, how can you live your life? This is why I was working so hard with my doctors, a nutritionist, a personal trainer, a gym. This is why I have been trying so hard to be as healthy as possible so that I can have my life back! Now my hands are being tied...does this mean all this work was a waste of my time? Should I have been out living life to the fullest with that money I saved up instead? Having fun doing the things I have always wanted to do that I may never get the chance to do. I can't change that now. I just don't know what to do anymore.

I am sorry for sounding negative, because as most of you know by now...negativity is not really my nature. I do try to be upbeat and positive, I just am at a loss right now. I am trying to stay positive that between the different places I will get the help I need, but I am fearful that the time in between may do enough damage to my body that I will have to start all over. I don't know that my body can handle that! That is my fear. Once the damage is done, it's done...there is nothing I can do. That is the problem with this illness (and MS is hardly my only medical problem, unfortunately). That is why the meds are important.

I guess it's in God's hands now and I just have to have faith! So far I have been very blessed and always taken care of. No reason to think differently now, right? I am sure that everything will work out....somehow it always does! I just hope I don't have any health issues arise in the meantime. :) I hope you are all doing well. Please take care!

What a show this is turning out to be! My parents got me hooked on this show this season! It is the first time I ever watched 24 (season 5) and so over the last few weeks I have been watching the other seasons on the weekends when I do my Avonex injections. This past weekend I started season 3. I have watched a little bit each night..it is just amazing! For those of you who have never seen it, I recommend, you go out and rent it or borrow it from someone who has it. This is a MUST see!


Okay, so you may be saying to yourself...what the heck does 24 have to do with MS? Well, nothing...and it is such an intense show, that I would be lying if I said it would calm you or take away your stress (although for some of you it may), but it is just a great show, very well done, and fun to watch! Very addicting actually. And, it nice to just hang out sometimes and watch some good TV....so here you go! There is nothing better on than this.

I hope you are all doing well. Please take care. :)

Stress! I don't really feel like I am under a lot of stress right now, but I suspect that is my problem. It is the first of the month and it has finally happened.....I am without any kind of health insurance, well, kind of. My spenddown plan has kicked in as of this month so I am not sure when or how I am going to make things work in regards to paying for that $1536 deductible. What a pain! I have spent the last couple months trying to prepare for this and I've applied to every place I could find but there is just not any funding available anywhere, it seems. No one seems to be donating any money right now. I wonder what that is all about?! :( The sad part is that my need is $1536 because I do have insurance that will kick in after that amount is paid, I hate to think of all the other MS'ers out there who need even more help and can't get it. If you are reading this and can help....please go to the Patient Access Network Foundation or one of the other foundations and donate some money!

So, I have two Avonex injections left and then I am not sure what to do. I contacted the people over at MS Active Source/Biogen and they have their research group working on what my options are. So far it does not appear that they have a prescription assistance program and the cost is aprox. $1300/mo. I can't afford that! Although, that would basically take care of my spenddown. I have been checking into prescription programs for some of my other meds and it is about a 50/50 thing. Some of the companies offer them and others don't. I have a feeling this is going to turn into a very stressful thing. I checked into the prescription programs once before but most of them would not accept my application when I had insurance. They told me to wait until my insurance changed, so here I am. I think if I can get the majority of the meds through this route (at least temporarily - for two years until Medicare kicks in) then that would be one less thing to worry about.

Next, I called and checked on my application to Washington Basic Health. It is a health plan that I applied to a couple months ago. The coverage is not that great, but I think it would buy me a couple of years until the Medicare kicked in. At least it would get me in to see the doctors and get my labs done/MRI's, etc. The application is still in processing. They needed some more information so I am gathering all that for them. Hopefully I can get it all for them and faxed to them by the first of next week. Between the two things....Basic Health and the prescription assistance I should be able to make things work until the $1536 is met, and then the other medical would kick in which covers 100% anyway. Have you ever noticed how much work it is when you have an illness? Being sick is more stress, more pain, and more illness! Oh to be healthy, eh?!

I emailed Dr. Jung (my neurologist) to see what she would like me to do. I have an appointment scheduled to see her in July. She mentioned that if I can't get somethings worked out in regards to prescription coverage then we may want to consider Tysabri which would be done in her office (therefore billed directly to the insurance along with the office visit). I think I need learn more about Tysabri. I am a bit reluctant to switch to this medication in part because I am not familiar with it and in part because I live almost 4 hours from my neurologists office (where the infusions would need to take place each month). I would feel more comfortable doing the research on this medication and finalizing all of my insurance issues (or at least getting them as straight as possible) and then making an informed decision after discussing all the facts with all the information (including my current financial/insurance situation) with her. Most likely the best time for this would be at my July appointment. :) Let's hope it can wait!

The worse thing is I am not feeling well. Hopefully this does not mean I am coming down with something....especially if that something has anything to do with my MS. That is the last thing I need right now. I have been having pain and headaches, er...no, Migraines! Everyday I wake up with one, for just over a week now. And I am SO tired. The kind of tired where I can't seem to stay awake for anything. That severe fatigue you get where you can sleep for hours and hours and feel like you have never slept at all. You never feel rested and your eyes are so heavy you can fall asleep in mid sentence, even your head feels heavy. That is how I feel. Even that twitch that I had for a long time, its back, under my left eye again. And, the pains I had in my feet they are back too. So, what does all this mean? I don't know...but I am not going to be happy if I am starting up a flare.

How about some good news.......Nate started his first job today! Okay, so he is too young to have a job, but he is really excited. Today he learned how to use the lawnmower and my dad is paying him to mow their lawn and help him do yard work this summer. My dad is having surgery (on his foot again, another toe) in the morning and so Nathan is going to mow their yard each week. Then once my dad is better he will help landscape the backyard (new house). Nate was so excited about his "new" job he talked my parents neighbor into letting him mow their yard too! :) He made $18 today. Pretty good for an 11 year old.

Well, I hope that you are all doing well and feeling good. Please take care of yourselves.

Nancy Davis was on Soap Talk today! She has a new book out called Lean on Me. We all know there is not much on during the day and as I was in bed (not feeling the greatest today) flipping through the channels on my TV I came across the introduction for Soap Talk where they were introducing Nancy Davis who has MS. She was diagnosed 14 years ago and took her celebrity status to create the Nancy Davis Foundation. She created the Race to Erase MS and the Center Without Walls. She also has designed peace & love jewelry in which proceeds go to MS research.

This just in on the MS front ......

As of today the US has given the A-okay for Biogen & Elan to resume sales of Tysabri!

Congrats to Mrs. King County...who became Mrs. Washington this past weekend (who happens to have MS)!

People should be ashamed of themselves!!! Bill would reserve drop off bins for charities. Once you read this artice, you will be amazed how greedy some people can be.

:(

I have gotten a bit off track recently since I have been so busy and my computers went wacky on me. :) I am feeling okay......a bit sore, tired (always with the fatigue lately, I wonder what that is all about?) and having a few headaches. Main complaint would be the pain I have in my feet is back. I suspect this may have something to do with the fact that I have been very busy lately and on my feet a lot. I am planning to take it easy this up coming week. Hopefully that will help! I have also noticed that I am a bit on edge (irritable). I would not say that I am depressed, but I am emotional. I think maybe that has to do with the fact that I am just tired. Have you noticed that you just can't seem to handle things as well when you are tired? It seems to me that before I had MS and even as it progresses it seems that I am less able to handle things that are stressful....but it is even more difficult to handle when I am tired and/or exhausted. Has anyone else noticed that?

Nathan and I got into it again....I feel so bad about it! He has been so well behaved lately, and we have been getting along so well. I guess it can't last forever, eh? Anyway, it goes both ways...he was doing something he shouldn't have (he is an 11 year old boy, they do that) but after telling him no and him not stopping I snapped at him and then it went from there. I used to have much more patience and lately I just don't seem to. Let's hope this counseling and case management works!

So, I am starting some new meds...I got the information packets in the mail yesterday and so I think the meds will be delivered next week. I start both Allergy shots and Xolair (which is an IgE immunotherapy injection for Asthma). It occurred to me that I don't really have a listing of my meds...so here it goes
Avonex 30 mcg injection weekly
Ibuprophen up to 2400 mg over 2 days w/the Avonex injection weekly
Topamax 200 mg bid
Baclofen 10 mg tid
Amantadine 100 mg bid (2nd dose at noon)
Aricept 10 mg hs
Oxybutynin 5 mg qd
Bupropion SR 150 mg qd
Calcium + D 500 mg/200iu tid
Ferrous Sulfate 325 mg qd
Cyanocobalamin 1cc injection
Vitamin E 800 units qd
Metformin 1000 mg bid
Prilosec 20 mg bid
Ranitidine 150 mg hs
Singulair 10 mg qd
Alavert-D 12/h bid
Flonase 50 mcg
Flovent 220 mcg
Advair 500/50 bid
Albuterol
Xolair 375 mg injection every other week

I know...I take a lot of meds every day, but what are the options? I asked if there are any I can come off of and I was told NO! Some of them are inhalers for my asthma...so it's not as bad as it looks. Hey...have any of you ever looked at what is in any of your meds? I was just looking and I take quite a few steroids because of my inhalers. I wonder if this is in part to why I don't get some of the same reactions as other people do to the IVSM? For example, I did not respond right away and I was able to go right to sleep with it, never did make me wide awake! Hmm....little food for thought! I should check into this. I can't exactly come off the asthma meds. Breathing is important. Let's hope the Xolair works well. :)

Anyway, my dad and I were talking and it we realized it may be a good idea to post at least once my medical information so that if my computer crashed (and CD's get scratched) than I always have a back up! So that is what I decided to do. I figured it was better to be safe than sorry and we should all have some kind of record. So here goes nothing.....

Medical Conditions: MS, Asthma, Sleep Apnea, Allergies, GERD, NASH, Thyroid Nodule, Vitamin b-12 deficiency, Iron deficiency anemia, hx of PCOS, hx of Endometriosis, hx of Cancer (skin, ovarian/ednometrial, NHL).

Surgeries/Procedures/Tests: Tonsillectomy & Adenoidectomy, Skin mole removals w/biopsies, Allergy skin testing (4), Laparoscopy, Hysteroscopy, Endometrial/Ovarian/Uterine biopsies, D&C, Salpingo-Oophorectomy, Total Abdominal Hysterectomy, Appendectomy, Thyroid Needle Biopsy, Gastric Emptying Study, HIDA Scan, Cholecystectomy, Liver Biopsy, Endoscopsy (2), Colonoscopy (4), PH Probe, Capsule Endoscopy, Leukemia/Lymphoma phenotyping, Breast biopsy & Lumpectomy, Spinal Tap, Lymph node Biopsy, Lymphadenectomy, CT Scan (multiple), MRI (multiple - head, neck, back), Ultrasounds (multiple), EEG, Nerve Conduction Study, Sleep Studies (2), SBFT, Nuclear Bone Scan, DEXA Scan, Bloodwork & UA (multiple).

It's true....if you could own stock in the medical field...I would be rich! :) I am glad that I have it all written down somewhere. Until now I just had it on a piece of paper, which...with my memory these day (note the Aricept above) could disappear at any time! So, this is good to have to look back on. I just had to fill out all of the fun paperwork for the folks over at Caremark for my Xolair. So, I just happened to have had all this information handy!

I hope you are all having a good weekend. I'm off to take my Avonex! Drugs.....We are all on drugs! What to do....can't live with out them?!

Music Video Codes By Musicjesus.com

Today's the big day! My parents are moving into their new house. We will be busy all weekend helping them to unpack and get settled in. I am very excited for them...but of course they are even more excited to finally have a house! It is just perfect for them. The yard is small enough that Nathan is getting a job out of it (and my mom won't have to worry about my dad getting out there and having health issues arrise)! There is even enough room for my grandma when the time comes. The master bath has a jacuzzi tub and a walk in shower (I am so jealous) and the kitchen is to die for! It really will be the ideal place for them. This picture was taken before the property was completed! Now that it is done...it includes a fully landscaped package and a fenced in backyard! I just know they will be very happy in their new home. :)