Have you ever noticed that just when you think you are doing better something comes up? I suppose that is just the nature of this illness. I have been getting better since my round of steroids. I mean...my eyes are still bothering me and I have still had some symptoms that are noticeable but not as bothersome, but today I woke up to the worse pain in my leg...the worse charly horse I have had in a long time and now, several hours later I am still having spasms in that leg and problems walking. Not to mention the headache, eye pain, eye spasms, nerve pins and needles....what the heck is going on? I guess it is just one of those days!

Tomorrow is my appointment with my neurologist and I am hoping to get some questions answered. It seems that I always forget to ask something while at my doctors appointments so I have been writing down what I want to ask and keeping a list of my symptoms. I know that we will be discussing my treatment options and I am hoping that there will be something out there that will help....maybe a clinical trial. I will find out tomorrow. Dave showed me an article yesterday that talks about invisible brain changes may be a key to MS progression. I am curious to find out more about this considering my last MRI on July 12th did not show any lesions consistent with ON or voice/hearing changes...however I have been having these areas effected as well as many other symptoms. I also am curious to find out about my progression as I was diagnosed with RRMS (which I know was correct) as I did not have a lot of relapses or symptoms in the beginning but over the last year and a half I have had one problem after another and since the end of October I have had 3 relapses....each with new symptoms and each with symptoms that seem to stay. So, does this mean I am progressing? Hopefully I can find out tomorrow and there will be something that can be done about it. Especially since my last MRI also showed that even on Avonex my lesions increased in size (not by a lot but still).

Anyway, I think I am going to go and take a nap before Nate gets home from school. Hopefully I can get rid of this headache and pains. Wish me luck tomorrow! I am sure everything will go just fine (I have a great doctor!) Have a good weekend everyone. :) Take care.

~2pm: So I just got a phone call from my neurologist office and my doctor is having to have surgery. I hope everything is okay. Anyway...my appointment has been cancelled and rescheduled to next Thursday. This actually works out okay for me though because it is looking like I may need to have an endoscopy while I am in Seattle. Maybe if I am lucky I can get everything done in one day!

My goodness...I just realized that I have not posted anything in just over a week! Things have been so busy around here with my son starting football and going back to school....not to mention trying to keep up with all of that given the level of fatigue I have had recently.

For the most part everything has been going well...just really busy. Nathan started grid kids football a couple of weeks ago and had his first game on Saturday. It was actually a jamboree and they did great. His team played against two other teams. They won the first game and lost the second. I got some great pictures of the first game..but thanks to the wonderful HEAT (yuck!) and being out in the sun my MS decided to show its ugly face by time the second game rolled around. I had to go sit in my dad's van with the a/c on and watch from there. It can be so frustrating to not be able to even do simple things like watching my son play football because of this illness. I think I can deal with most everything (as long as I am not taking Avonex...see previous post) that this illness gives me. I mean, I have accepted that I am going to have good days and bad days and I just pray that the good outweighs the bad, but it would be nice if I could do more outside. Apparently my body just can't take it.

I really over did things on Saturday too because not only am I still trying to recover from my latest flare...but I did go sit in the heat to try to watch my son's football game and then after coming home and relaxing for a bit (actually several hours) Justin and I took Nate and his friend Isiah to the fair. We had tickets for it and Saturday was the last night. I figured it would not be so bad because I was taking my walker with me and I have one of those walkers that have a seat on it...so I could sit when I got tired. Plus, we waited until it got dark and cooled off. Problem was that when we got to the fair and I looked in my trunk (because I thought I had it in there) it was gone. Me and my memory! Turns out that when we got home from the football game I brought it in the house and then forgot I had done that so I never put it back in the car. This made the fair a bit of a challenge as there were so many people there. Nathan and Isiah only got to ride about 5 rides because the lines were so long (I did go on the fairis wheel...as much excitement as I could handle at that point, lol). Anyway..the kids had a ton of fun and talk about a long day. They came home and went right to bed! That makes it all worth it! Unfortunately I then was unable to function come Sunday and Monday. Used up too many spoons, but that is okay....I was happy to do so if it meant having some fun with my son!

Nathan started school yesterday. He has such a busy schedule and I hope he does okay. The school rotates between an A day (M,W,F) and a B day (T,Th). In otherwords there are certain classes he will have each day (Math, Science, Reading, Language, Social Studies, and Technology) and then there are some that will rotate (PE and Band). Then you add the 2 hours of football practice 4 times a week and Boyscouts on Wednesday nights (when he does not have football)....he is going to be crazy busy. I am hoping that with him following a structured schedule this will not overwhelm him. I am sure he will be just fine...and the best part is that he will be so busy doing all of this that this is bound to keep him out of trouble and teach him some responsibility. I have made it very clear.....if he doesn't keep up with his school work and chores there will be NO football as that is a privilege!

So I was supposed to go in to see my neurologist next Tuesday and they called to reschedule. Now I am set to go in this Friday. I understand that things come up and so I don't mind but it would have been better for me if I could have kept the Tuesday appointment as we have to travel to Seattle to take my grandma to the airport that day (she is going back home to Arizona). My sister has decided to go to Seattle with my dad on Tuesday though so it works out okay...just a lot of driving for him. I am nervous about my appointment on Friday because I know that I am still not doing the best when it comes to my MS. I am sure she is going to want me to go back on some kind of medication to slow the progression...which I am all for as I don't want to be more disabled, I just don't tolerate any of the ABCR's and so I am not sure what other options are out there. I did read on Dave's blog an article about a cancer drug that is showing some help for people with MS.....Rituxan. I am not sure if this would be a good option for me, however it does state that it is used to treat Non-Hodgkin's B Cell Lymphoma....which is a major plus for me! I have complete trust in my neurologist however, and so I know everything will be just fine. She is a wonderfully brilliant doctor and I know that she will do whatever she can to help me get better! :)

I have a question for everyone! Have any of you ever gotten what looks like a malar rash from taking any of the meds? I don't know what is going on but for the last couple weeks or so my cheeks and nose are a reddish color, almost like a rash....only it is not a rash. I am not sure what that is all about. It gets really bad...almost looks as if I have a sunburn when I go out in the heat too. I am thinking that maybe it is a side effect from the steroids I was on...but I am just not sure. I guess I will find out on Friday. It is all just strange....always something to deal with! And this flare has been a bunch of new symptoms for me, so I would not be too surprised if it has something to do with that. I am sure it is not anything serious though as I have great doctors that I am sure would have figured out if something else was going on with me. After all I have had my blood drawn like 10 or more times in less than a month.

Well, I hope that all of you are doing well. Please take care of yourself and have a great week (lol, it's already Wednesday...week is half over).

Today was my last day of prednisone! Hopefully they will have done their job and I won't have to do that again.....oral steroids are NOT fun.

It is interesting to me that I am feeling so much better. My eyes are still bothering me and towards the end of the day (usually by about dinner time) I seem to have had it....but it seems that the longer I am off Avonex the better I feel (especially emotionally). I am more aware of my MS as my symptoms are more obvious; but I am able to be myself.....to be happy. I think that I would rather be happy and aware of my illness (twitches, headaches, and all) than unhappy and unable to live my life in a way that I am able to be me (if that makes any sense). Of course I don't want to continue to become more disabled, but living life to its fullest....being happy is maybe a little more important.

Next week my son returns to school. He will be in the 6th grade....that is crazy to think! He has started football and is having a blast. He is doing really well at it. They have practice every M, T, Th, and F for two hours and then games every Saturday. His first game will be this upcoming Saturday where they will have a jamboree. All of the teams in the area (aprox. 20 teams) will show up and play against each other, each team playing two games. Nate is on the Dolphins and will be playing against the Huskies at 1pm and against the Raiders at 2pm. It is so cute how seriously he takes all of this. They were assigned their positions yesterday and he was put as the tackle guard, which I was kind of surprised of because I would have thought that the tackle guard would need to be one of the stronger, bigger kids. Don't get my wrong, Nate can be tough and he is very good at tackling...but he is quick and throws far. He is one of the fastest runners on the team. He was happy with the position he got though and said that he does get in a lot of running anyway, so that is good! I guess my problem is that I just don't know enough about football....I guess it is time to learn, lol. :)

His 6th grade orientation was today and he got his school schedule. He did not get into art this quarter, which was too bad because he is so good at it, but he did get into band....which he is really excited about. He is planning on learning to play the bass guitar. He was considering the drums, and it was a toss up between the drums or guitar but after going to the music store and talking to the band teacher he has decided the guitar would be better. I am sure that my neighbors will be thankful for that! I also think the guitar will be of more benefit to him. It seems to me that everyone I know who learned to play an instrument in school did not stick with it unless they went on to study music (which very few people do), unless they learned the guitar. That seems to be something that sticks better and so I figure maybe this will turn into a good investment (and trust me after finding out how much all of this costs today...that is just what it is, an investment).

I was planning to go to a NMSS function this weekend but decided against it based on two things. The first being that this weekend is Nate's first football game and I want to be there to support him and the second being that I am not sure I should try to drive to Seattle when my eyes are still not quite right. Fortunately I will get the information from the program anyway. It turns out that the national offices will have people at this program to interview people with MS and videotape the program. They will then use it as an educational tool for all NMSS chapters. They are going to go ahead and get me a copy of it once it is finished since I was unable to attend.

I don't have a whole lot planned for this week....just getting Nate ready for school next week and continuing to try to recover. Justin will be here tomorrow and is staying until Sunday. It will be good for Nate to spend some time with him before school starts and I believe that we will be going to the Benton Franklin Fair to check out some of the exhibits. It will just all depend on how I am feeling and how HOT it is outside....it was 100` again the other day. Hopefully it won't be hot all week!

Well, I hope that all of you are doing well. Please take care of yourselves and don't over do things. Have a good week!

Okay, so here it is...the email I sent my neurologist.....

I have been doing some thinking recently about my treatment. At my last appointment you mentioned that you feel Avonex is still probably the best bet for me. I have been off the Avonex for about a month now and although I am in the midst of this relapse, emotionally I am feeling great. Over all I am feeling much more like myself (sense of humor, able to handle stress, much more positive). It seems as if over the last 6 months of being on Avonex I had a major change within myself, one that I did not really understand or know how to deal with. I became very depressed and lost touch with many aspects of myself. Sure, I was put on an anti-depressant and that may have helped a bit, but I think I really did experience a major depressive type side effect from this medication.

Having said this, I want you to know that I am committed to doing whatever it takes to have the best quality of life I can. I refuse to let this illness run my life. I have already had to sacrifice more than I would have liked because of it and it is important that I am able to maintain as much of my health as possible for as long as possible. This is why I started swimming, working with a personal trainer, see a dietitian, etc. I understand I don't have control over how this illness progresses, however I do have control over how I deal with the illness.

As part of being committed to having the best quality of life I can, I have been very compliant in following the instructions of my doctors and taking the medications that have been prescribed. Some days I feel like that is all I do...take medication (this is meant to be a joke,lol). I understand the importance of taking Avonex or one of the other disease modifying medications and am hopeful that there is something out there to help me. If Avonex is indeed the best bet I will take this medication, I just want to make sure we can discuss all options as I really do not like how I became lost during my time on this medication. Maybe there is a trial you know about...I have heard also of Cytoxan for MS?

I know it would not be good to go for long without any medication either, seeing how my month off of Avonex has led to a relapse and although I am currently on steroids I continue to have many symptoms (headaches, eye pain, numbness, loss of feeling, drooping feeling in the face, pins and needles, spasms, memory lapses, mental confusion, weakness, fatigue, hearing and voice weakness). These symptoms are bothersome and not something that I want to worsen or continue. I understand as I recover from my relapse many of these symptoms will get better, some will even go away.

I know I am not the easiest patient to treat (as I have other medical problems to factor in). I am sorry for that...unfortunately I was not blessed with great DNA. I hope you have gotten copies of my labs back by now and have seen that during my time off the Avonex my liver function has gone back to normal. This is another concern that I have about being on the medication. Dr. Shaw (my GI) worries about the long-term use of Ibuprofen due to my history of GERD and recent abdominal problems as well. These are things that I would like to discuss before resuming Avonex or making a decision on treatment.

I apologize for the lengthy email. I figured it would be best to email you in advance of my appointment as I know that you are a very busy woman and so I would not want to put you behind schedule on the day of my appointment. I figure this way you know my concerns and we can better discuss them and all of the options so that the best treatment decision is made (without putting a kink in your day, of course!...remember, I used to work in medicine, I know how it is, lol).

Please let me know if there is anything you need me to bring to my appointment (i.e. any information from other doctors). I look forward to seeing you again next month and hopefully by then the steroids will have done their job and I will be back to my old (young) self.

Thanks for everything,

Jaime

By the way, I had an eye exam recently (showed the ON...gives a baseline of where I am). I requested all the information be forwarded to you. Also, I hope by now you have gotten my MRI results. It was mailed out on August 10th. Have a great weekend!

I am happy to report I am feeling a little bit better. I am still having a variety of symptoms and not real sure that the steroids are any kind of wonder drug or anything (but I was able to visit all of you today and leave you comments, yay!). This is good news because I am able to be on the computer longer than about 5 minutes....big relief! It is amazing how much we rely on technology, isn't it?

So after being sicker than I have been in months, finding out from my neurologist office that the steroids probably should not make me as sick as I have been, and then speaking with both the GI office and my PCP....I headed off to the ER tuesday where I spent several hours being pumped full of liquids because I was WAY TOO dehydrated. Turns out due to my lowered immune system (thank you very much prednisone) I probably caught a flu bug. Great! Just what I needed on top of my MS relapse, dare I ask if I can possibly have anything more happen? The good people of the ER did the typical tests...UA, CBC, CMP, and this time a stool sample (yuck!). Do you think I could possibly go for more than a day or two with normal lab results? NO! Of course not, I am not that blessed. So, the doc comes in...labs are on the brink. UA looked good...well, that's nice, I was not in for a kidney stone, lol. My white count is up, potassium is LOW, and that STUPID liver of mine is elevated AGAIN! What the heck is going on?! The nice doctor in the ER explains to me that the liver is most likely elevated due to the prednisone. Everything must go through the liver....and since I am only on it for another week or so, it should level back out. I think he could tell that I was feeling a bit discouraged/frustrated (at the news of my abnormal labs)....not to mention how sick I was.

The rest of the week I have basically spent at home....recovering. It is Friday now and FINALLY I am starting to feel a bit better. I am keeping food in me now (always a good thing) and my stomach is not so upset anymore. Now, if I could just get the rest of my body to function properly....I would be good to go! :) I had a follow-up appointment this morning with my PCP (more labs...I think if they don't quit poking me I am going to soon look like a druggy with permanent markings) to see if my potassium is back to normal. I should get the results next week. I also had my eye appointment...went well. It was very interesting to have them show me pictures of my eyes and the active optic neuritis. This will provide a baseline of where I am right now and then they recommend that I come back about 6-8 weeks after finishing the steroids to redo the eye exam (this way they can see if the steroids did the job). My right eye is worse than my left...but I do have ON in both eyes, as well as pleural edema in the right eye. It still amazes me how quick all of this came on. Let's hope it leaves just as fast!

I do think my eyes have gotten better. It seems to me that my eyes and headaches are both better.....happening most frequently in the afternoon and/or later in the day. Then again it seems all of my body seems to shut down, if you will, later in the day. I have symptoms all throughout the day and they vary...but it is funny to me how even on a day where I do absolutely nothing I still get very weak (even my hearing and voice are weak and more shallow) later in the day. I am inside with the air on so I would not think this has anything to do with the heat....and it is not 100+ anymore like it was a couple, three weeks ago. Who knows...just one of those things I suppose. Damn MS! LOL Anyway, I have had some new symptoms with this relapse. I have been noticing a type of numbness in my face and hands that leaves me with almost a feeling where I can't feel (does that make sense to any of you?) I also have had on a couple of occasions this feeling as if one part of my face (my cheeks area, under my eyes) would go numb and then it feels as if it is drooping, but if I look in the mirror everything is okay. Strange, I tell you, very strange feelings. I just think that my senses have all been screwed up this time around. Most everything else I have experienced either day to day (due to permanent damage) or during other relapses.....numbness, pins and needles, spasms, memory lapses, mental confusion, weakness, fatigue, and pain. Hey, at least this time around I have not fallen....should I even be mentioning this? Oh well, too late now. LOL I hope I did not just jinx myself.

I have been doing a lot of thinking about where do I go from here in regards to treatment. I am not currently on anything at this point (actually I am on LOTS of meds....just not a CRAB) because of my liver. Oh, well, I am taking the steroids....but that is not a standard treatment. I have sent my neurologist an email explaining just how I feel about going back on Avonex and that I want to review all of my options before making any decisions. I became very depressed when on Avonex and I don't ever want to go back there! Maybe tomorrow's post I will put a copy up of my email. I just figured it would be wise to inform her in advance....seeing how she is a very busy woman, so we can be prepared for my next appointment.

Anyway, I hope you have all had a good week.....some of you seem to have also come down with the MS bug (hmm....something in the water perhaps?) Let's hope this weekend will bring forth some time to relax so that all of us are better and can enjoy our weekends! Take care.

I can't remember the last time I was so sick! I am sure not all of this is due to my MS. Actually I would swear to it. Some of what I am experiencing I am positive is my MS....the eye pain, headaches, twitch under my left eye (yes, it is back.....I am starting to think this is an indicator of my relapses), weakness, fatigue, etc. Some of it I am positive is not the MS but is more likely due to the steroids....the nausea, abdominal cramping (or this could just be still from before), hot/cold flashes, jittery feelings. It is horrible. The last couple of days I have not been able to keep more than toast and water down without some serious stomach problems to follow. This I am sure have to do with the meds. If I did not know any better I would think I was on chemo again....yuck!

It is funny how things work out. Here I thought I was doing really well. I guess that is what happens, eh? Speak too soon! I have been having this abdominal pain over the last month or so....which is really when a lot of this became obvious. Sure, I was having some headaches and other symptoms, but I thought I was doing great....it was just the heat! That abdominal pain is for the most part gone (it comes and goes....but nothing like it was) and I have gotten the majority of my lab results back....since stopping the Avonex (off for a month now) my liver function is completely NORMAL! This is great news.....only now the question is what to do about treatment. I have been on Copaxone....unsuccessfully, and now the Avonex doesn't seem to be the best choice based on recent liver function...(which also rules out the use of the other interferons), I am not a candidate for Tysabri due to my history of B-cel lymphoma....so I guess we will just have to see how things will go. At my appointment last Monday however my neurologist spoke about getting me back on Avonex...because that is probably my best bet (if we can get the liver function back to normal). All I know is that I don't want to feel the way I do right now for long.

I am happy to report some good news in the midst of my relapse, however. :) Besides the fact that my liver function is back to normal (good news), I had my follow-up with the ENT specialist last week to go over all of my lymphoma/thyroid stuff and everything looks good. As a matter of fact the thyroid nodule has even decreased in size by 1mm! The lymph nodes in my neck appear to have had no change and are most-likely benign (due to the location...there is no way to get in and do a biopsy....but due to the size and that there is no change he is certain all is okay). I will follow up in October. I did find out something interesting from him in regards to my MS. He asked me about my voice because while in his office I was in one of my moments where I was somewhat loosing my voice (seems to happen often towards the end of the day) and I explained to him that for the last couple of months now I tend to get weak later during the day and both my hearing and voice get more weak. I don't loose them completely....they just get soft and weak. The thing about it is that I did not have any lesions suggesting this on my last MRI (in July). He did some tests and showed that I do have some low-pitch hearing loss which would be consistent with a weakening.....most likely to do with the nerve, he said. This is not consistent with typical hearing loss as that would show as high-pitch hearing loss. I am just glad that this is only a mild occurrence and it happens as my body tends to weaken later on throughout the day. He felt this would probably get better as I recovered from my relapse, just to be safe however....he is going to recheck things when I follow-up in October.

Today I have an appointment to go get my eyes checked to see if the steroids are helping with the ON. Wish me luck! From there I am not sure what I will be doing.....hopefully feeling a bit better. I left a message with my neurologist and so hopefully they will have some suggestions on what I can do to get to feeling better. I hope all of you are doing well. Have a good day! :)

I got back Monday evening from my doctors appointments. They went fairly well. I am very fortunate to have a couple of the best of the best in their respective fields. :) My first appointment was with my neurologist. I am not back on the Avonex just yet as we are rechecking the liver enzymes and it turns out I am having a bit of a flare.....nothing too serious. For the most part I feel okay. Some headaches, numbness, and pain in my legs, but the main thing going on is a new thing for me which is quite bothersome (and also why I am keeping this short)...optic neuritis. I have noticed over the last couple of weeks more headaches and sharp pains in my eyes, but figured with all this heat (and all the other symptoms) it was simply due to that...heat! But, over the last week it got worse and bright colors, even the computer is bugging me.....that is not good or normal for me. I have this sensation like there is air pockets in my eye from time to time....it is all strange and new to me, as my eyes have been always really healthy considering (besides that I wear glasses). As a matter of fact, I just went through all the exams in May....and everything was just great. Goes to show how these things can just happen.

Anyway, so I am on IV steroids (started yesterday) with daily blood draws cause of that wonderful liver of mine and then I will continue with oral steroids for the rest of the month until I see her again on the 5th of September. As for the Avonex, it is still probably my best choice and I would rather be on it than nothing at all. The side effects aren't great....but I don't respond well to the others and the medication is there for a purpose. I trust my doctor's opinion and know I need to give this a real chance to work. I want the best quality of life I can have! That is what it most important. Let's hope for the best with the liver....which is why I saw my GI doc. He rechecked everything and did some specialized tests too (just to be on the safe side). They are being extra careful because I am still having this pain on my right side (not as often but still as painful when it is there). I really appreciate that they are so careful with my health! It is great to have doctors that care about their patients the way mine do. I may not be on much for a while, but I assure you I am okay. Just taking it easy for now......and taking care of me! I hope all of you are well. Please take care and have a good week.

What a busy weekend this has been. I am still having a bit of pain, but over all I am starting to feel better. I am not sure if it is because it is not as hot as it was (it is still in the 90's during the day...but with a breeze which is NICE and at night it is in the 60's) or if it is because I am no longer taking the Avonex (been without it for two weeks now). I am just not sure. I am still having problems with depression though and I was really hoping those feelings would go away with me not taking the Avonex. Especially considering I was so full of life and not depressed before all of this. Maybe it takes a while to get out of the system or maybe I have just developed some depression because of my illness (and where I am at with everything). This is something I think I will talk to my doctor about!

It was really nice to get out and do something this weekend! One of my major problems is the level of fatigue that I have and it has been nice to have a little bit of energy. It is not like I am able to go and run a marathon or anything....but it was nice to get out of the house for more than an hour without having to go home and take a nap or spend the whole next day in bed recovering from it. I do think I used up a bit too many spoons however....although it was worth every minute!

Friday night we had tickets to go to a Tri-city Dustdevils game. They were playing the Everett Aquasox and won! Nate brought along a friend and they had a blast. His friend had never been to a baseball game before, so this was a great experience for him. It was 11 pm before we got home however, and I was tired! The next morning we were up early as it was football try outs for Nate. He is in grid kids football this year. Everyone makes the team, which is nice...only we won't know what team he is on until the afternoon of the 12th. There is one more try out on the 12th and after that they will assign teams. I think this will be a great thing for him to be involved in. He is SO excited! They practice 4 times a week after school and then have a game every Saturday. The season will end just before Thanksgiving. This should keep him busy and I think he will have loads of fun too! After Nate's football try outs we were off to watch my sister who was playing softball. She is part of the special olympics softball team for the Tri-City Explosion. They won both of their games and next will head to Everett, WA for state finals. I am SO proud of her. To go out and get involved with this is so wonderful! Next we went to my parents for a BBQ. It was about 10 pm by time we got home.

Needless to say this morning I slept in. I have had a very lazy day today, basically just trying to stay in and relax. I know that I have probably done more than my body can handle (I am tired, exhausted, in a bit of pain, and numb) but I am glad I did. It was great to get out and do something with the family! I think I need to get out and do more.

I hope all of you had a great weekend! I am off to see my docs tomorrow (neurologist at 10:20 am & GI at 1:30).......wish me luck. Take care and have a good week.

This is just a reminder for everyone that Montel Williams will be doing a show dedicated to raising awareness of MS this Monday, August 7th. Please check your local listings.

He will show the many faces of MS by featuring a black woman who had been a ballerina, a white male attorney in his 40's, and an 8 year old girl who was diagnosed at the age of 5 (and has started her own MS fund). Let's all show our support for Montel and tune in!

I am not sure what it is about MS but for some reason I have not responded as well to this illness as I have in the past with other illnesses. Maybe it has to do with the way it effects our brains...I am just not sure. I have an appointment on Monday with my neurologist and after having a follow-up MRI (which I will get the results of at this appointment) I think I will see if I can get her to explain to me where my lesions are and how that impacts my MS symptoms. Maybe this will help me understand all of this a little more.

I find it interesting that when I was sick before (going through chemo, etc) I was so full of life. For some reason I have not been able to do that with my MS and that is not okay...that is NOT who I am. I think one of the constant struggles that we have (at least I do) with MS is that because of the unpredictability of the illness and the depression that comes with having such a loss, not to mention the inability to be able to control our environments (which is a huge thing for me) it can be difficult to stay positive and that is in part why it is more important now than ever to do everything in our power to stay positive. Does that make sense? It does to me....but I am not sure if I explained it well, hopefully that does make sense to all of you!

I had an appointment with my counselor yesterday and of course with how I was feeling, I just broke down. It was great that I just happened to have an appointment with her because I think I really needed it. She knows me so well and it really does help to have someone who can just look at the whole situation (knowing my history too) and give some suggestions. She helped me to make more sense of things and it is going to take a long time for me to get to where I was before and where I want to be....a new me with this illness!

For a long time....as long as I can think of I have been the one who took care of everything, fixed everything, did everything. I am a very passionate person and when I do things I give 1001%. It is difficult for me to have to accept help from others because I am the one who has always helped others out, I am the one who has always found the solution......gotten us through the storm (if you will). This is just how I have lived my life whether it was for a project, work (staying late, taking calls and walking people through things from home, going that extra mile to make sure a patient got what they needed, etc) to my life outside of work....at home with taking care of my sister, having mommy & Nathan days or just within family ties, which are so strong and come first before all other things (I am so thankful I have the family I do). This is just how things are for me and how they have been. With my sister being disabled it was my responsibility to make sure she would be taken care of after my parents are gone, it is my responsibility to take care of my parents when they are older.....this is how things should be.....this is how a family should function! I am having a difficult time with the idea that some of these things are being challenged by this illness that I have. I am having to change how I think and that IS the hardest part of all.

I have always had a strong connection to my spirituality. There are certain things that I just know....I just believe and there is no one who could convince me of any other way. It is something that you just feel. I honestly believe that we are not given any trial during this life that we can't handle....the trick is figuring out a way to handle it. That is where I am at in my life. I have been given a trial that has been the most difficult trial of my life.....and I am at a loss. I do the best I can (which is really all anyone can do). When talking with my counselor yesterday she pointed something out that really made a lot of sense to me. She said "Have you ever thought that maybe the reason you are going through this because God is trying to teach you that it IS okay to focus on you for once and take care of you rather than everyone else?" That was a very difficult question for me to answer! Of course I don't think that God does things to anyone out of spite or to be mean but that He allows certain things to occur so that we can learn these life lessons.....become better people!

I have spent so much time taking care of everyone around me and trying to be everything they needed that often times I have neglected myself....I know that. This was a big reason for my move, so that I could have the support system that I needed, only it has not happened that way exactly. My parents are a great support and are always there when I need them (that is NOT what I mean) but there have been so many other things "come up" this year that although I have done better about taking care of me, I don't think I am where I need to be yet. I am still somewhere in limbo because I still can't seem to say NO! I still put others before me.....maybe I always will. This is a hard lesson to learn and one that I need to take day by day. Of course I will never stop putting others before me....I just think I need to find a balance so that I can fit myself into that equation a little more.

I have been doing a lot of thinking about my life lately and I have been questioning what I am doing with my life, how this illness is impacting my life, where have I gone? I seem to have this constant struggle within myself....this need to do something. I am not sure if it is because I am having a hard time accepting aspects of this illness or if it is the type A personality in me that needs to have control over something or if it is the work-a-holic in me that just needs something productive to do each and every day (I rather enjoyed my job when I was working and was damn good at it). Justin says that I don't truly know how to relax (maybe he is right). I have worked since I was very young and many times I have held more than one job or worked while going to school. I have always been a busy, busy bee.

I have been without a job for a full year now and it has been the most difficult year of my entire life. Not because I have had financial problems but because I feel as if my life now has no real purpose, no real meaning to it. There have been many things happen over the last year within my family and so I have been grateful to have had the time off to help out, but maybe I am just not as good of a person as I once thought I was because that is just not enough for me. Don't get me wrong, I love my family and they come first. I would do anything for them, but I am sick of our lives being nothing but one health crisis after another (whether it is my MS, my sister's health, or my dad). Let's hope this next year here goes better! I know that the move here was the right thing to do as I could not have gotten through the past year without my family, and I don't think they could have done it without help from me either, but so many times I miss my life. I can't help but want my old life back....I just don't know how to be happy in this new life. This new life sucks!

Sure, some of this is from the MS and my not wanting to accept that life HAS to change or be different. I have a difficult time with that. Why should it be different? Why does it HAVE to change? That is a load of BS if you ask me. I know we have no control over our symptoms...but guess what? I have been dealing with illness for many years now (I had cancer before, asthma my whole life, etc.) This is not what bothers me. Why can't we still have a normal life anyway? My mind still works and my guess is that as long as I am following orders from my neurologist and doing the best I can to stay healthy, my mind will be good for a long time! Most days my body still works too (just parts of it might not work as well....or I am weak and it takes me longer.....or I am tired). So, why can't I work just like people who don't have MS and make a decent living and have medical benefits provided to me. The reality is I could still do that kind of job if a company was flexible with me...willing to let me work from home. Problem is there are not a lot of companies out there who are willing to hire someone to work from home. Everyone wants to micromanage! Not to mention....you hire someone like me and provide healthcare, well there went the premiums....they are based on the company as a whole. I did my internship at an insurance/investment firm. I know that they look at the company as a whole and if someone has an illness (i.e. Diabetes) the premiums will go way up....for something like MS or Cancer they may even be denied. This is part of the problem!

I know it is important to think outside of the box and consider things that I would not have done before.....things that would maybe allow me to work from home. Have you ever checked into working from home? It is a scary thing knowing what is real and what is a scam! And, of course I don't NEED a job....actually my doctors are the ones who told me to take time off because of what it was doing to my health to be so busy all the time. I just can't help it. I can't spend the rest of my life sitting in front of the TV (daytime TV sucks!), after doing my small amount of house cleaning that is, seeing how I do that practically every day. There must be more to life!

I don't really have any hobbies nor can I afford to have any (SSDI does not afford anyone to do anything) not to mention I just don't have any interests like that. Sorry I know some of you are big into knitting or sewing and I think it is great, but SO not my thing. If I was desperate I could sew on a button but I would prefer to have someone else do it. This is probably one of the things I miss the most about working (income, meeting people, being social). I miss being able to put some money aside and travel. That is what I LOVE! I used to just jump in the car at a moments notice and take off anywhere....Vegas, Colorado, Idaho, back home (Washington), or sometimes I would plan the trips. Sometimes I would even plan enough in advance (couple-three months) to surprise someone with a trip (my mom to NYC for her birthday, Nate to Yellowstone for a week). These are the things I miss. Being full of life, having good times with family and friends, and just being care free to live life as I want.

I apologize for this being depressing....as I am sure it sounds that way. It was not meant to actually. I just need to find a way to get some of my life back. I have lived my life in a way that I was always too social, outgoing, and free spirited to be stuck inside (if you will) for the rest of my life. That just doesn't work for me. Some how I need to find myself again.....some where along the way I have gotten lost!

Cross-country cycler spins wheels for MS

"Thomas Beasley wanted his life to matter, so he got on his bicycle.

He set out to raise $100,000 for the National Multiple Sclerosis Society. In 15 years, he's raised $103,000, criss-crossing the country with a Cannondale mountain bike, spandex, Gatorade and the kindness of strangers.

The quest began in 1991, a year after his best friend and mentor, John Toodle, died of multiple sclerosis. At the time, the 6-foot, 22-year-old Beasley weighed about 150 pounds and was training for the Tour de France, riding 100 miles a day.

The friends planned to do the Tour de France together. It would have cost $100,000 for both.

"My grandma always said to make my life count for something," he said."

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