I have spent most of the day today on the phone trying to find a Rheumatologist that accepts my insurance. Talk about frustrating! In the WHOLE State of Washington there are a whole 2 Rheumatology offices who accept my insurance....both of which are in Seattle. That is not a big problem as I already go go Seattle to see my GI and Neurologist, so I hopefully can arrange appointments to all happen on the same day! :) The frustrating part is that out of ALL the Rheumatologists in the state only 2 offices accept the insurance. This is ridiculous if you ask me.

There were a few offices that were so picky about what insurance they would take that it was just the so called "best of the best" insurance coverages. What are patients supposed to do when there are not any specialists that will accept their insurance? Do they think we can just afford to go see them anyway and pay cash? I am amazed by this. It used to be that doctors would see patients because they were sick, they were there for the science of it and helping people, not because of $$$. Granted, I know some of these insurance companies don't pay very well (the allowables vs. write offs) and they don't have an easy job, but come on....these are people's lives we are talking about! When it gets to this point, someone should do something.

I used to work in medicine and it used to be that the specialists HAD to take the insurances if they were the ONLY one in the area. What happened to that? GREED! That is what I think. I understand they can't just see people for free....and that is a whole other situation. If someone comes in and can't pay and doesn't have insurance, then I can understand them being skeptical about taking that patient (they should still refer them to the hospital to be seen), after all.....they do have a business to run, but come on....if someone HAS insurance and you still are not willing to see them because their insurance does not pay enough money....that is when that doctor needs to take a step back and think about the kind of doctor and person they have become. I have always stuck up for doctors as I have great respect for most of them and understand it IS NOT an easy job. I have seen that first hand, but this really saddens me to think that in the WHOLE state....as a specialty they have made the choice to not take some patients who have a need (all over a few extra dollars). Thank goodness I am just in pain (still trying to figure out why) and have Osteopenia.....what a nightmare it must be for a Lupus patient with my insurance (seeing how that IS serious). It's all about the money.....SAD!

"Leading scientists have raised serious concerns about a major government (UK) study into the effectiveness of drugs used by thousands of people with MS."

"The study was originally being conducted by an established team at Sheffield University. But it has been switched to Parexel - a company with commercial links to three of the four pharmaceutical companies involved in the study.........

.......There are also concerns about how much of the research will be made public. It is feared patients currently taking expensive drugs like beta interferon may be kept in the dark even after the ten year study is complete.

The National Institute for Health and Clinical Excellence decided in 2001 not to sanction beta interferon - or another MS drug, glatiramer acetate - for use on the NHS, ruling they did not represent value for money.

However, after a sustained campaign by the pharmaceutical companies, charities and patients, the government rejected the advice of its own advisory body."

Click here for the full story

Of course we all know about the site reactions, possible liver damage, and risk of depression...but this makes you think. Is this switch about money, did they find something that could potentially be dangerous to us (if using these meds over a long period of time)? Just as everything else with this illness....more unknown. I really hope for the sake of all MS'ers that this is just a simple matter of "business" and there is not some risk factor that we may one day find out about (after using the medication for years). There have been many studies showing these medications do work......so, why is this one different? Just something to think about.

Problem is....until there is a better treatment available what are the options? Do we just sit back, take nothing, and risk becoming disabled even sooner, while we wait on someone else to find the answers for us? We need to do something people! This is why it is so important to get involved and raise awareness and money for MS research. My friend, Dave (in the UK....over at MS not just a diary) participated in a charity event this weekend where he raised a lot of money for MS research...he jumped out of a plane and although I don't know exactly how much he raised I know it was well over $1000, maybe even over $2000. Dave, You Rock!

Of course not everyone needs to go and jump out of a plane, but there are things each one of us can do within our own communities. If you aren't sure what you can do....contact your local NMSS (in Canada - MS Society of Canada; in the UK - MS Society). They could always use more people to raise awareness and donate money.

The good news is that my labs came back basically okay. Most of them were just fine. My liver function is still slightly elevated...but improving according to Dr. Shaw (hmmm...maybe this does coincide with the Avonex injections) and my iron studies show I am still anemic (no real surprise there). The bad news is that we still don't really know what is going on, what is causing all this pain.

Dr. Shaw said that although it still could be my liver causing the pain it is not likely because my liver function is improving and it is not too elevated. So, there are a number of other things that could be going on. Based on the location and type of pain....it is most likely musculo-skeletal. He wants me to call my PCP on Monday and have them get me in to see a rheumatology/Immunology specialist next week! This way they can either treat it or rule that out. He says that if that is not what is going on there is a small chance that I do have an ulcer or that I am having spasms of the bile duct and/or pancreas. These things are more rare (well, except ulcers). The ulcer is unlikely because I just had a colonoscopy, endoscopy, and SBFT within the last 6 months. An ulcer would have been detected at that time if I had one at that time. Considering I am on Prilosec twice a day and Ranatidine at night..this should be protecting me, making this an unlikely possibility. However it would not be unheard of either seeing how these can be caused from NSAIDS and since starting Avonex I have had to take Ibuprofen each week with my injections (and on the day following).

I have a follow up appointment with him on August 7th and if it turns out this is not musculo-skeletal then he will order some more tests. He informed me that the reason he did not order the MRCP is because it is a specialized test and with there being only a slight chance that I am having these muscle spasms...it may not be worth the risk (until other things can be ruled out) seeing how there is a risk of developing pancreatitis. Let me tell you how happy I was to hear that! I have enough medical problems and so I don't need one more. I have been pretty blessed when it comes to my doctors. I am so grateful I have doctors that are willing to look at everything and try to really figure out what is going on, rather than just give me a medication and tell me to go home.

Somehow I have been lucky enough to have doctors who actually care about their patients and don't suffer from the "God" complex (at least not too much). LOL I have had doctors in the past who suffered from the "God" complex, but they were so good that it was not a huge thing. I think from working in medicine you learn that although in some situations it is nice to have warm and fuzzy...the important thing is that they are good and know what they are doing. After all they are only human ("God" complex set aside) and therefore they are not perfect. They are just doing the best they can!

More good news....I got my training manual in the mail today to become a NMSS Ambassador! My first training is on Monday (phone training) and I think there is a lot that can be done in our area. Hopefully we can come up with programs that will work well enough that they can impact all MS'ers! If any of you have any ideas of programs you think would be of benefit...let me know. I would love any suggestions. Of course I have my own ideas, but I would love to also hear from others!

The weather is finally starting to cool off a bit! That is always good news (well, until it gets too cold, lol). The high today is supposed to be 88` Whoo Hoo! Much better. If it continues to cool off (and stay cool) I might actually be able to do something outside for longer than a few minutes! There is an art fair going on this weekend...so maybe I will go check it out. The hydroplane races are going on this weekend also (biggest in the country!), and so tomorrow Nate has been invited to go out on a boat (with some friends of our family) and watch the races from the river! I am sure he will have a blast! I am so glad he is getting the chance to go. I always hate it when there are things he wants to do and I am not feeling well. Thank goodness for friends and family who help out! :)

Hopefully all of you will get the chance to do something fun this weekend! Stay cool and take care.

So, I still don't know a whole lot about what is going on with the pain in my side, but I am back from Seattle. I am glad we did not have to stay the night. My GI doc poked my abdomen all over and decided to do further labs. He is doing a CBC, liver function (and more specialized liver enzyme testing), pancreas enzyme tests, and iron studies. Once we have the results (which he will call me with this afternoon) then he will let me know if he needs more testing done. Unless there is something critical, I can do the testing here in the Tri-Cities! :) I was so glad to hear that because I have to go back to Seattle on August 7th as it is. I love Seattle and all...but I really did not want to go 3 times in just under 2 weeks. It is too early to really know what is causing the pain but, he has some ideas as to what could be going on. The thing is, until the test results get back there is no way to really know. For now we will just have to wait and see (and continue to take pain killers). So, my Friday plans....stay in, stay cool, try to maintain pain, and take it easy! I hope all of you can do the same (minus the pain that is...hopefully you have no pain!)

I have a question for everyone....have you noticed changes in your dreams? I have had on a few occasions since starting Avonex some nightmares (another one last night) and other nights I don't seem to dream at all, which is unusual for me. Just curious if other people have noticed changes in sleeping patterns/dreams with the interferons. Some of my nightmares have been pretty messed up and unlike any dreams I have had before starting the meds (sometimes they have even been violent). I posted the first time this happened....maybe it is just a coincidence, not real sure but I would love to get some feedback about this!

Also....I have just gone to catch up on everyone's blogs and Kim (I am sure you all know who she is! and BTW...she has posted Show 28 so go have a listen) has posted a letter that Natalie put up on her blog. It goes a little something like this....

"Having MS means many things change, and a lot of them are invisible. Unlike AIDS and Cancer, most people do not understand even a little about MS and its effects, and of those that think they know, many are actually mis-informed. In the spirit of informing those who wish to understand ...

... These are the things that I would like you to understand about me before you judge me..."

and with that I give you only a teaser as I ask that you please visit Natalie's site for the full letter! Also, I just want to point out that this is not to make AIDS or Cancer seem less serious than it is...it is just that MS can be an "invisible" illness and many people really do not understand it. Take it from someone who has MS and has had cancer. It all sucks!

My dad will be here in just a little while to pick me up and then we are heading to Seattle. I am seeing my GI doc at 3:45 today and hopefully he will be able to figure out what the heck is going on.....why I am in so much pain and have had all of this nausea/dizziness. He is a great doc and so I am hopeful that he will figure things out.

What I am not looking forward to is the long car ride while I am drugged up. I am sure by time I get there I will feel as if I just got off the tilt-a-whirl, octopus, or some other crazy ride at the local fair. I am not sure if I will be having the MRCP while I am there, however. I was notified that my doctor is not sure he can get the information he needs from that test, which is why he wants to see me today. Hmm...not sure if that is a good thing or bad thing. I guess I will find out in just a few hours. I was also told that I should pack a bag and plan to stay the night "just in case".......not sure about that either! If you don't hear from me for a couple days, you know why. I am still in Seattle...doesn't mean anything serious is going on, just that I am still being poked and prodded.....or that they are "fixing" me. One can only hope! They are human after all and I am not easily "fixed" but I know that he will do his very best as he is a very good doctor!

I hope you are all doing well. Have a good day and take care.

By the way....I know I have been slacking when it comes to keeping up with blogs/comments, etc. If you know me, you know this is not usual for me (I apologize, as I just have not felt well this week). I promise to catch up when I get back from Seattle and things calm down a bit. I really appreciate all of you leaving me comments and support! It is wonderful to know how many people out there care enough to read. I hate that anyone else goes through this too (and some of you have it much worse than me - I am sorry for that) so I think it is great that we can support one another. Thank you for that! :)

Why is it that just when you think you are starting to feel better and things are starting to look up.....nope, it just can't be that simple! Friday I was doing so well, took Nate to a Dustdevils game, his friend, Kolton came along and then stayed over. They were up late watching movies and having a good time. I did my Avonex and had very little side effects. I had a little bit of pain and a small headache, but that was okay.....not anything like what I had the previous weeks.

Saturday I woke up and had this horrible pain in my side (upper right abdomen). I took my regular meds, which also consist of Topamax and Baclofen (for nerve pain and muscle spasms/spasticity) and figured it would go away. No such luck. So, I called my doctor. He said you need to go to the urgent care. I went to the urgent care. I had a mild temp and my BP was high (which is very unusual for me)...140/90. They did a UA.....normal. They then did a CBC and LFP. The CBC was normal (for me....always just a bit anemic) and the LFP showed my liver enzymes were a bit elevated (didn't get the results until Monday though). I was told that it could be one of several things....my liver, my pancreas, my rib cage, a bile duct that is blocked, or any other number of things. At least they were pretty certain it was not too serious since I don't have my appendix. There was not a lot they could do for me so they sent me home and told me if the pain got worse to go to the ER.

I tried to make it through the night, but the pain was just too much. Around midnight I finally gave up and went in to the hospital. That was a fun experience. Even though I brought the lab results (UA & CBC) from earlier at the Urgent Care I got to repeat them. They also did a CMP. This showed that my sodium, albumin, and A/G were all low and my liver function was slightly elevated. The UA and CBC showed the same as the previous ones. The doctor there told me that it was not showing a whole lot and so I needed to take some Loratab and come back in 12 hours to recheck. This seemed strange to me and honestly, kind of pissed me off. I am not feeling well, already in the hospital and they are just sending me home. So, they go to release me and take my vitals....my BP at this time was 159/93. The doctor says this is because of the pain. It will come down when you take some pain pills. So she gives me some Loratab (which I am not supposed to have tylenol based meds....but that is all they had on hand) and some anti-nausea meds to last until I could come back in to be re-tested.

Sunday rolls around and I go in to be re-tested. Fortunately this time I have a doctor who seems to give a crap about his patients. My fever has finally broke and my BP is okay....pain pills must be working some, even though I still feel like crap. So, they come in and have me do another UA....normal. Draw more blood....another CBC, another CMP. This time my electrolytes are okay but my liver function is just a little more elevated. So, off to CT. This did not show a whole lot, but my liver is enlarged. Great! This is what happened when I was on chemo.....so is this from Avonex? Well, we are not sure. All I know is I am in a whole lot of pain and we are still not really sure why. Due to the amount of pain I have been in along with how much nausea and dizziness I have had, the doctor gave me some pain meds through IV along with some IV fluids before I was discharged. I was also given not one but two doses of anti-nausea meds through IV (only this did not help AT ALL) . I was then sent home with a RX for hydrocodone and anti-nausea meds. My wonderful mother came and did all the running around for me as I was unable to at this point and let me just say...these meds did NOTHING for me. Even with the anti-nausea meds I was unable to keep anything down, not even water.

Monday afternoon when I finally got to the point where I was no longer throwing up (TMI...sorry) I decided I was not going to take any more of the pain pills. They were not helping THAT much and it seemed that if I were going to be in pain anyway, I would prefer to be in pain and not throw up. I called Dr. Jung (my neurologist) and left a message with her of what is going on......her office called back yesterday and they are giving me a break from the Avonex for two weeks until my next appointment on August 7th, at which time I will be rechecked to see if the Avonex has anything to do with the slight increase in my liver enzymes. I also called Dr. Shaw (my GI) and left a message with his office. They have since called me several times. I have an appointment scheduled to see him on August 7th also, but they want me to come to Seattle to have a test done beforehand....a MRCP. His nurse will call me back with the date and time as this is a more specialized test and they need to have a radiologist available who can read it.

I then called and scheduled an appointment with my PCP, Dr. Breeden who I saw yesterday. He is wonderful. He looked over everything and examined me. My BP was way high again....148/103 (most likely due to the pain). He said that this may or may not be my liver but that the best thing would be to control the pain for now and get in to see Dr. Shaw as soon as possible. He is the specialist and hopefully will be able to figure this out. Good thing I had already contacted Dr. Shaw's office! Dr. Breeden was nice enough to get me some different pain medication and anti-nausea meds. It is possible that I am getting sick from the others because of the tylenol in the medication and since my liver is hypersensitive right now.....this could just be a problem. He gave me a RX for OxyIR and Tigan which has NO tylenol at all and the Tigan is a heavier anti-nausea. I got it filled last night and so far so good! I am still in a bit of pain, but this medicine seems to help more. I am not sure if it is because it makes me so drowsy, or what, but at least I am not getting sick from it.....that I am very happy about.

Today I am basically staying in bed, on meds, and trying to get some rest and be as pain free as possible. I hope all of you are having a good day.....week. Please take care of yourselves, and stay cool. It is still really HOT here! I think today it is supposed to be 100` (which is better than it has been....but still hot).

I hope all of you are doing good.

Dads are more likely than Moms to pass on MS

Rethink Human Drug Trial? It is always unfortunate to hear of these things. My thoughts are with those families and I appreciate what they have done. The reality is that there is always someone who will respond adversely to a medication in the beginning. Unfortunately this is a part of the process to determine if a medication is safe for the general public.

The Power of Oxygen! Can it really help with MS? Here's one of you Dave & Erik....to continue with your looking into alternative treatments. My thought...oxygen is a good thing to have (as I have asthma and may be willing to go for treatments in conjunction with my asthma) but I am not yet convinced it is something to consider in way of a treatment for MS. Having said that....I also use a CPAP machine at night (I don't have a severe case of sleep apnea, but mainly due to my asthma, and it helps alot to have that extra air!) I guess time and more studies tell.

Tysabri is now available in US Pharmacies!

Epidemiologists are searching for an explanation for a very high rate of MS in Wellington village, Lorain County, Ohio (3.7 times the national average)

My goodness....is it EVER going to cool down? According to MSN Weather it is supposed to be 107` today. Another day of staying inside with the air on! Nothing big planned today. I did my Avonex last night and I'm happy to report I have had very little side effects (only mild pain and a headache). This is MUCH BETTER than the last few weeks! I have not been doing a whole lot in this extreme heat, except staying indoors, which may be contributing to my feeling better. I am grateful to be feeling better but I miss being able to get out and live life. I think I am going a little stir crazy, lol.

Next month I will be very busy...which should make up for my month of staying indoors. I have two trips to Seattle planned (let's hope I can make both of them). First one will be the first weekend of August. I am taking Nathan to a Dustdevils game the night of August 4th and then to the Point Defiance Zoo & Aquarium on Saturday, August 5th. We are then going to stay in the Seattle area over the weekend. I have follow up appointments with both my GI (Dr. Shaw) and my Neurologist (Dr. Jung) on Monday, the 7th. Then we will return home!

The next trip will not be a fun one. My grandfather passed away in February and was cremated. My grandparents are snowbirds (live in Northern Idaho in the summer and Arizona in the winter) and his wish was to be laid to rest in Idaho. The memorial service will be the following weekend in Northern Idaho. It has been years since I have been to Spokane and Priest Lake/Priest River, Idaho. I wish I was returning under better circumstances.

The third and final trip will be back to Seattle (assuming by this point I am still able to go....who knows what will happen between now and then). The National MS Society is having a program in Seattle for MS'ers between the age of 18-30 and I was invited to go. I am registered to go with one guest (most likely Justin...only he's not sure if he can get the time off yet). It should be very informative and will help MS'ers learn how to deal with situations like balancing families, friendships, work, college, personal time, etc.

I used to travel a lot and so as long as my body can keep up this should be a lot of fun! I miss being out on the road. Some of that will also depend on the HEAT! If it is anything like this month...I may not be up for all the traveling. I guess I will just have to see how it goes. For now I am keeping my fingers crossed and hoping to get in some good, fun time this summer (even if it does have to coincide with doctors appointments, etc.)

Well, I hope you are all enjoying your weekend. I am relaxing....wishing I were able to go out and play (maybe go out and dance...another thing I miss!) One day....let's get that cure! Take care and have a fun weekend!

More evidence of why STEM CELL RESEARCH must continue! "It's magic." Those were the words of York great-grandmother Julia Brown who has multiple sclerosis (MS) and is experiencing an amazing improvement after "miracle" stem cell treatment." Click here for her story!

Tysabri's Return Draws Cautious Optimism...click here for more info

New HOPE for patients with agressive MS. "A treatment regime, consisting of a limited course of mitoxantrone followed by long-term Copaxone."

New study in New Zealand is trying to link the connection between MS and Climate! It is the largest study of it's kind in the world and very important in helping us all know more about what triggers MS

MS suffers are largely being ingnored by the NHS (UK). There is something like 85,000 people in the UK with MS (largest form of disability over there). This is disturbing to think that our illness (in a part of the world where there is such a high incidence) is not getting the help needed all because ""it is difficult." I wish we could do something to help out...any ideas?

Neuropsychiatric Symptoms in Multiple Sclerosis...Depression is not the #1 symptom (as previously thought). Can you guess what is?

In honor of Reggie Johnston...an MS'er who inspired many!

August 7th: Tune in to the Montel Williams show where he will dedicate the entire show to raising awareness of MS. 'To show the many faces of MS, Williams interviews a black woman who had been a ballerina, a white male attorney in his 40s, and Briana' an 8 year old who was diagnosed at age 5.

Four people linked to MS Support group in the UK are being charged for distributinig Cannabis. I am saddened by the idea that these people are facing charges for helping MS'ers who have gotten no relief from traditional medications. I know there is a lot of controversy about medical marijuana, but time after time we are hearing of people who get GREAT benefit from this! To prosecute these people would be a shame.

Today is turning out to be a nice and relaxing day. I had my housing inspection this morning (passed with flying colors) and Nate has an appointment with his counselor this afternoon...but let me tell you how nice it is to just kick back and relax because there is nothing that I "need" to do.

Having said that....I do have to do my Avonex injection tonight. I am not looking forward to it as the last few have been difficult. I was doing so good with the Avonex and for some reason, lately....just not working so well! Over all I think the medication helps, I just think maybe I have been more weak than usual because of the heat (making it difficult to give myself the injections). And last week....well that was not fun. I reacted to it just as I did when I first started (flu, chills, pain, etc). It is interesting to me that just as I get used to the medication and seem to be doing good....crap! a bad reaction hits. I am not sure what that is all about. I suppose it could be worse though.

I hope that you are all having a good day and can take some time out to relax! I wish you all well. Take care.

"Casting the first veto of his 5½-year presidency, President Bush says that legislation easing limits on federal funding for embryonic stem cell research "crosses a moral boundary."

More stem cell news and information!

I for one do not agree with the veto. I understand that there may be a moral boundary to take into consideration but it seems to me there MUST be a way to design the legislation to allow for this research to go on. It is too important and will help so many people (throughout the world...not just Americans). Why not limit it only by stating that they won't take them form aborted fetuses. It seems to me that would solve the problem. These stem cells don't only come from abortions...there are many from the umbilical cord, placenta, etc. Just as we have the right to be an organ donor, why not ask mothers to be if they want to be a stem cell donor (for when the baby is born). This is only one example of how to be flexible so the research can continue without crossing the moral boundaries. Please leave me comments and let me know how you feel about this.

Today I turned 30. My uncle tells me that means I am an old woman now, lol....of course 30 is not old. It just gets better from here on out, right? One would hope. Things have not exactly been the easiest lately, but they are getting better. I spent a fun morning with my son before taking him to his appointment (for a weight check...he's gained almost 3lbs since coming off the meds! YEAH!) and then had to go and get my drivers license renewed. I am officially a Washington driver now, lol. I have lived here almost a year but still had my Utah license. It was time to get my Washington license as my Utah one was going to expire tonight. What is it with drivers license pictures...they all seem to look like crap. I don't know many people who are happy with the way their picture looks...and mine, well let's say...none of you will be seeing it (sorry, not even you Dave...it's crap!) Then again, I am not big on taking pictures and don't really like any picture of me anyway. We ended the night at my parents where we had a nice dinner with the family and then cake and ice cream for desert (of course).

Over all it was a nice day (just another day). I am one year older and just happy to be alive! I have been very blessed to have the family I have and to have been given the opportunities in life that I have been given...even though there have been a whole bunch of trials thrown in the mix! That is life, isn't it?

Todays music is a group of the top songs from the year I was born. My son informed me that I MUST insert this video...he loves this song! He is a BIG fan of 70's music, lol. Enjoy!

This past couple of weeks have been difficult. There has been a lot going on between what my son has gone through with being in the hospital and my not feeling well (even if it is only because of the heat). I have been doing a lot of thinking! I have learned that thinking is not always a good thing....especially when you are pumped full of medications that have depressive side effects. That said....I have still been doing a lot of thinking. I can't seem to help myself.

Last week I got the notice that my lease was about to expire and I needed to renew it. I can't believe I have been here almost a year. So, this has gotten me thinking. What have I accomplished over the last year? I don't feel like I have done anything. What a waste! Talk about depressing. I moved back to Washington because it was recommended by my doctors that I have a support system and slow down. If I continued at the pace I was at before, my health would have gotten much worse. So, after I finished school...I quit my job and moved to Washington State to be closer to my family. This way they could help out. Thing is life has been so up and down since moving here. I am not sure that my health has really gotten any better. Sure, there are some things that are better (my asthma and allergies don't seem so bad here) but other things are the same or worse. I had the worse MS flare I've ever had since moving here. coincidence? Maybe...there is a good chance I would have had it anyway, maybe sooner if I would have continued the way I was.

Thing about it though is what have I really accomplished? Is this really how life with this illness has to be? More and more I feel like my life is worthless. Okay, maybe that is not the right way to describe it because I know I have my son and my first priority is to make sure that he grows up right. My first and most important job is to be his mom. He is not here all of the time though (goes to school, stays w/grandparents, hangs out w/friends, etc) and as he gets older and gains more independence, then what? Of course I will always worry about him and he will always be my priority, but he will need to do things on his own. Maybe this is because I have always worked. I miss working! It is just not enough to get up in the morning, clean my house, hang out with my son, and watch TV. Maybe it would be different if I had small kids at home to keep me busy, or was married...I don't know!

I feel like I am just sitting here wasting away because there is nothing I can do anymore. I mean, I can do things...only there are so many restrictions...what can I really do? I can't go outside when it is hot because then I am unable to function....the heat makes my MS act immediately. I become weak, instant headache. It is crazy. It feels like a flare, only according to my neurologist it is not a true flare, it is indeed because of the heat and I am NOT to go outside under any circumstances (easier said than done....although I am doing my best). In the winter it is just as bad. The cold air makes my muscles cramp up and then because of my having Osteopenia the bones freeze up. I have such severe pain....it is like a no win situation. I can't even go to the gym right now. It has been so hot that between the heat outside and my getting overheated when working out....I just get too weak and the MS symptoms start up. Get this....swimming was my saving grace until this most recent group of symptoms started, but I have so much dizziness that I feel like I am going to throw up whenever I get in the pool. I am not sure what I did to piss off the MS God (of course I am joking) but I need a break!

I am feeling a bit frustrated in that department, actually! I have been feeling a little off when it comes to matters of spirituality recently too. I think that all of this is just getting to me. I have always been very strong in my beliefs and I have always been a big believer that everything happens for a reason. I still believe that and know I am not cursed or any of those things. I do believe we are not given anything we can't handle, but sometimes...like recently, I have been questioning what I believe. Maybe because things have been so hard? I don't know. I am trying really hard to stay strong and not to let all of this get me down as I try to be an optimistic person. I guess right now is just one of those times where it all sucks! I guess I just have to ride out the storm and pray it passes soon.

Maybe I am just loosing my mind.....I think that is one of the side effects of MS isn't it? Or, maybe that is a side effect of Avonex? No, sometimes it feels that way though. I think what it all boils down to is that between the MS and the Avonex (which does cause depression) I just need to quit thinking about things, because for the most part I have been very blessed and when I start to think....well that is not always a good thing!

I hope all of you are having an easier time of it than I am. Please take care of yourselves and try to stay cool. I don't know what it's like where you are, but it is still in the 90's here!

It has been a while since I last posted anything....sorry for that! I really appreciate all of the emails and comments, you guys are great. :) Things have not been great around here....today is better, and tomorrow is a new day. I figure take things day by day, thats all we can do anyway, right?

4th of July ended up being a sad day for us. My son was hospitalized.....he is home now. I am really happy to have him home but I am not sure he is really ready to be here. Over the weekend (just before the holiday) he was acting really strange.....not himself at all. I had taken him to see the PCP the previous week because I was worried at how skinny he seemed to be. He eats really well, but seemed to be loosing weight. Not to mention whenever we would go out in the heat and get in the car he would throw up. I figured car (motion) sickness, and that is what the PCP originally thought. He has lost a lot of weight (and did not have any to loose....he's a stick). Over the last month or so.....16 lbs. This is crazy! After his behavior over the weekend they realized he was probably having a reaction to one of the medications his doctor gave him for depression. One of the possible side effects is weight loss...and with the other behaviors, they now were thinking it was causing him to have seizures. Very scary.....especially since he has been healthy (it's rare for him to even get a cold)! The doctors feel that he is doing better though, and they will monitor him closely over the next few weeks! They took him off that medication and have started him drinking protein drinks (I got him some ice cream today so he can have shakes!) three times a day. For an 11 year old that is as tall as he is (almost 5') and only weighed just over 70 lbs to begin with....this is NOT good. They did an EEG and that came back okay (done after the meds were discontinued). They wanted to make sure that he did not have an actual seizure disorder and so waited until he had d/c meds to get an accurate reading. Fortunately it appears that this was just a reaction.

Justin (my ex) was here for the week too. It is great that Nathan has him to depend on. :) He had planned to come to the area that week to visit Nate and go to Seattle with us (I had my appointment with my neurologist last Thursday). That was one really long day. Nate was in the hospital here and since I have been having so many new symptoms and not feeling well at all, they moved my appointment up to July 6th. We drove to Seattle and back in one day. It was a very long trip and I think that I pissed off my neurologist. We were a 1/2 hour late for the appointment because there was construction at the top of the pass and we were delayed. They wanted me to reschedule and I pushed to be seen.....after all, I had rented a car so Justin could drive some of the way, it is almost 4 hours each way and honestly, I have no control over the fact that there was construction. I have not been late to her before and I plan my trips so I can get there on time. I always leave so that I have time to get there.....and I do get there on time, I was not in the mood to have driven that far only to be told to go home, however! I understand they have other patients, and I was more than happy to wait. Everything turned out okay though and I was able to be seen. I love my neuro though.....she really knows her stuff and I am grateful to have her! :) I just think that was not a good day for anyone. I really hope that it was not too big of an inconvenience for her.

My visit went okay. She thought that over all I looked pretty good. I am having a lot of new symptoms....and some old ones, but she thinks this has a lot to do with the HOT weather we have been having in Washington State! She gave me strict orders to basically stay inside and out of the heat......easier said than done, unfortunately. I have been trying really hard to stay out of the heat, but I am on my own here and so sometimes I must go out.....I don't actually have anyone else to do things for me (i.e. grocery shopping, laundry, etc.) and with Nate being in the hospital I had to go visit him each day and meet with his doctors.....this was just too important! I am doing my best to keep cool however. I even applied for a cooling kit from the MSAA. :)

So, today I went in for a repeat MRI to see how I am responding to the Avonex (I have been on it almost 6 months now) . My guess is that I will probably not officially get the results until next month when I go back to see her (August 7th). She discussed the possibility of having me switch from Avonex to Tysabri. We are not sure if I will even be a candidate for this medication but if the Avonex is not doing its job and with my still having symptoms......it may be the next step. With my history of cancer, I may not be eligible for it so we will just have to see what happens. Personally, I am good with staying on Avonex. The idea of taking Tysabri scares the crap out of me! With my history (cancer x3 and now MS) I feel like I would be asking for PML......or at least I would think that makes my risk higher. I have been lucky so far to have great doctors who caught things early and I was able to get the chemo/surgery needed, but I am not so sure about that. I trust my neuro fully and know she would monitor me close, but I am still not sure it is worth the risk. I am thinking that I would rather be disabled my whole life (even if it means I get much worse) than risk developing something like PML and dying. I want to be here to raise my son!

So....some good things! I have been talking with the National MS Society in Seattle and I am taking on MS Ambassador.......also Issues Ambassador! I feel like there is a lot that needs to be done and I need to do my part. They are having a training session on July 31st and so I suspect I will be able to do more after that training (done by phone....nice!) I am looking forward to working with them to create new programs and get better ideas out there to help MS'ers have a better quality of life! I know it is important to spend money towards a cure but we need to do something to have a better quality of life NOW! Not to mention the advocacy piece. Getting the government on board is also very important. As a matter of fact I have been asked to participate in a study that will be sent out to the Insurance Commission, all insurance company CEO's and will hopefully impact how businesses and insurance companies have to cover costs for MS'ers. I am really excited to find out the results of the survey.....of course, I had a lot to say!

I got a letter in the mail the day before yesterday. MS Helping Hands (reminder to go and donate to them or any of the other charities/foundations listed to the side-->>) approved me for assistance in the amount of $1000.00, so I have now met my spend down and have insurance again! Between that and the hospital bill from the other week....the state's requirements have been met. I still don't agree with the way the system is set up and think it needs to change (for everyone who will ever have to go on SSDI)........for now I am just happy to have some coverage! I really appreciate the folks over at MS Helping Hands and think they are doing great work. I don't know what I would have done without them.....Thanks again!

I hope that you are all doing well. I have a lot of catching up to do over the next couple of days....but I promise to get around to each of you soon! Seeing how crazy things have been, and will continue to be (Nate is being followed very close and has several appointments over the next week or so) I may not be updating everyday like I normally would. Once things calm down a bit and he is back to his old self....then I will resume! For now.........enjoy some great home grown music!

FYI.......a bit of Pearl Jam trivia! Did you know that Eddie Vedder has a connection to MS? 'Alive' is based on the fact that Eddie found out that the man he believed to be his father was not. And that his real father had passed away a couple years earlier (from complications of MS). "In the original story, a teenager is being made aware of a shocking truth that leaves him plenty confused", he explained, "It was a curse -- 'I'm still alive.'" I am sorry that he had such a difficult life but I am glad he found a healthy way to deal with his issues (by giving us all some great music to listen to!) Until next time.......Take care!

Things have been "crazy" to say the least. I am not feeling the best (not sure if it is really a flare or just a pseudo-exacerbation due to the heat). Whatever is going on my MS does not like me very much right now. There have been other things going on too. I don't really have a lot of time now....so I figured I would just drop in for a quick hello, let you all know I am still alive! :) I am headed to Seattle to see Dr. Jung on Thursday. She is wonderful...so I am sure that (even if I don't feel much better by then) she will know just what to do!

For now....I want to wish you all a very happy Independence Day! I know I am very grateful that we have the freedoms we have thanks to all of the people who have sacrificed for this nation (and continue to do so)! Please remember to say a prayer for those who are unable to be with thier families this holiday because they are over in Iraq (or maybe other places in the world...but still serving this great nation)! I hope that you can get some time to relax (in between the parades, BBQ's, and fireworks...that is, lol). Please take care and have a happy 4th of July! :)