First let me start off by saying how grateful I am for my neurologist! She really is the best.

We left my house just after 8am. It was VERY cold out but the roads were good. Due to the extreme nausea that I have been having I slept most of the way. I woke up somewhere around the top of the pass and it was beautiful. All covered in snow....I wish I would have had the camera. We arrived early enough that we were able to spend sometime at the outlet mall in North Bend. My dad had some things he wanted to get for my mom. Shh! Anyway, then we headed to the VA hospital (that place is huge) to go to the PX where my dad had a couple things he wanted to get for my sister and son. Next stop was my appointment.

The appointment was at 1:20. I was first seen by the medical student who talked to me about what happened over the last three weeks, confirmed my medications, and did a neuro exam. She then went to talk to my doctor and they both came in to talk to me. After quite the discussion my neurologist and she did an exam, she took us out to her computer and pulled up not only the MRI, but also the normal and abnormal CT scans. She explained all of them to us and showed us what the radiologist thought may have been a bleed (and why it could not be a bleed). She also explained to us why even though all of the lesions are on the left side of my brain the majority of my symptoms are on the left side of my body. That yes, there can be lesions in other parts of the body....yes, there can be damage done in the brain that does not show up in the MRI....and that although the MRI is a great diagnostic tool, it does not always show exactly what is going on with the patient. There are some patients who have many lesions but little symptoms and others who have many symptoms and few lesions. This is one more difficult piece of the puzzle I suppose.

The good news is that she does not think this last three weeks has been a relapse. She said that I am having what is called a complicated/complex migraine. Basically that is a more rare form of migraine that presents similar to a stroke. The symptoms are similar in nature and if it goes untreated it can cause permanent damage. It also can not be treated with your typical migraine medication which is why I have not responded to the meds the doctors at the hospital gave me. She put me on a medication to help release the pressure from my brain. She also put me on a medication to help with the nausea.....the unfortunate part of that is that it turns out I have to have it in the form of a suppository because I have quit responding to my meds orally. She is also having me start on Aspirin 325 mg four times a day. The combination of these three medications as well as the Topamax is supposed to help with this type of migraine.

Today was my first full day of this and so far I have not noticed much of anything, but I really didn't expect much on the first day. I was told to give it a couple days and email my neurologist and then follow this for a couple weeks. I am sure this will help out and then I am praying that I NEVER EVER have one of these again. More than anything though......I am so happy that this was not MS and I'm relieved it was not a stroke. :) I hope you are all doing well. Take care.

I decided to change my template this morning. I came across this website that offered templates for blogger and when I saw this one it just stuck with me. I am not really sure yet if I will keep it as I am just kind of trying it on for size (if you will) so let me know what you think.

I have always thought there was something to the dragonfly so I did a little research this morning and this is what I found out. Dragonflies have been around for many years...in fact they are one of the oldest living group of insects on earth. Over the years people have had many thoughts about dragonflies. Many years ago the Japanese thought of them as a good luck charm, so much so that they became an emblem of the emperor. The Mimbres people of the American southwest painted the dragonfly on ceremonial pottery as a symbol of life, and The Zuni people believed the dragonflies to be a messenger of the Gods. They symbolize change, illusion, both strength as well as weakness. They are unpredictable and unstable but are always able to adjust to their surroundings (perhaps this is why they are one of the longest living insects to ever survive). Their colors are a result of reflecting and refracting the power of light. As a result, they are associated with color magic, illusion in causing others only to see what you wish.

Some people who have the dragonfly as their totem have had emotional and passionate early years, but as they get older they achieve balance with mental clarity and control. They are a symbol of the sense of self that comes with maturity. They are reminders that we are light and can reflect the light in powerful ways if we choose to do so. "Let there be light" is the divine prompting to use the creative imagination as a force within your life. They help you to see through your illusions and allow your own light to shine in a new vision.

Hi all. Just thought I would let you all know that my dad and I made it back from Seattle safe and sound (we were blessed with no snow all day....yay! and the roads were basically good the whole trip). It is almost 9pm and I am very tired. My head still really hurts but I am very pleased with the outcome of my trip and appointment! I told you all my neurologist is the BEST. I just knew she could figure something out and explain all this to me. Anyway, I am off to take my meds and get some sleep but I will update everyone on what is really going on tomorrow. I hope you have had a good day. Take care.

That's right....I am heading back to Seattle and I couldn't be happier about it. After the experience I had in the hospital I can't wait to see my neurologist so that she can explain what is REALLY going on and try and help me. Yesterday we went to the hospital and picked up my medical records and a CD that has a copy of the MRI/MRA, both CT's (the normal one from the 13th and the abnormal one from the 20th), the ultrasound of the corroded artery, and the echo. I am going well prepared.

I sent her an email yesterday and talked a bit about my concerns about what the local neurologist said to me. How I am just so confused now and would really appreciate it if she could go over the tests with me and the comments that the local neurologist made. I have complete faith in my neurologist and trust in her capabilities, but somehow the comments this local neurologist made still upset me. She said things to me like....your MS is not that bad according to your MRI, your lesions are on the left side of your brain so why is your left side weak and numb (at this point I wanted to say...you are the doctor you tell me), your symptoms don't make sense based on your MRI. Things like that. I told her that my neurologist mentioned that the MRI changes all the time and that is in part why people have different symptoms come and go, I also mentioned invisible brain damage and she just said...Oh okay....if you want to believe that and rolled her eyes.

She was not really rude about it, but just had that attitude like whatever lady! The thing about it is that it made me start to question a bit....why is she questioning all of this......she is a neurolosist after all. I know what symptoms I have from day to day and how I am doing. I have to live with it. I can't explain it, I am not a doctor and I am sorry if she is unable to explain it even if she is one. I don't expect that all doctors would have all the answers, they are only human after all and there is a lot that we still don't know about MS. What I would expect is to be treated in a compassionate way, with some understanding, and honesty. If you don't know just say so. Have an open mind. If you don't believe in that just tell me you personally don't believe in that type of medical science but there are some neurologists who do, and more studies are going into it....if there is (as in the example of invisible brain damage). Don't just roll your eyes at me.

Anyway, I will get off my soap box now....that is the thing with this illness though. It can be so hard to have an illness that people just don't understand. That has never been so obvious to me than this past week as I was in the hospital. The doctor I saw when I was in the hospital did not get it. Not AT ALL. It was not just with my MS either. I have other medical conditions that he did not seem to understand. I get that I am a complicated patient. I really do! But, come on people....did he get his degree from a cracker jack box?

After I picked up my records yesterday I went through them and get this.....he had orders in there for me to be on insulin. WHY? He had listed under my diagnosis as Type II Diabetic. WHY? I am not. I never have been. I am not sure why he would think that I was. It makes the first little while I was in the hospital make more sense however. The nurse came in and mentioned they were bringing me in paperwork to fill out and then they would bring in my insulin and I said, wait I am not on insulin, I am not a diabetic. My mom said I think you have the wrong person, maybe it is the person next door (it was a shared room). So she leaves and the CNA comes in and says they want to check my blood sugar. I was like okay. So my blood sugar is 67. I tend to have low blood sugar...this is due to the type of liver disease I have and how it effects my pancreas. She says good thing they didn't give you that insulin as she walks out. So, when I leave the hospital the doctor orders me on a diabetic diet. Hello, I am not a diabetic! My blood sugars were low the whole time because they had me on one and they kept asking me why my blood sugars were so low. Gee, I wonder!

What I have is a condition called NASH. I take Metformin and Vitamin E for it (Metformin is also used to treat people with diabetes....if he would have read my chart he would have seen I am NOT diabetic and this is why I am on that). I tried to explain this to the doctor and he would not listen to me. What happens is the liver is damaged and becomes enlarged. I carry a gene that makes me more likely to develop liver cancer in the future (fortunately I have recently been tested and no cancer currently...rare condition), and a I carry a hepatitis gene (although I don't have hepatitis....it is a genetic thing). Anyway, it has a high likeliness of turning into cirrhosis and they are not sure what causes it....in my case they believe it was a side effect of a hormone variant chemo drug used to treat my cancer I had 5 years ago. I don't quite understand the relationship it has with the pancreas (my endocrinologist explained it to me once....but I can't really remember it well enough to explain it to you) but at times I can have low blood sugars. This is also why I eat a pretty specified diet. Like everyone I cheat from time to time, but I try to eat a certain way because I don't want to cause any further damage. The liver can heal itself...but there is no cure for NASH, they don't know enough about it, and I don't want to do anything to make it become cirrhosis if I can prevent or at least prolong it. This is why I am not allowed to take anything with Tylenol, yet this doctor did not want to listen to me and tried to give me Loratab. I am at high risk of not only making the NASH worse, but I carry two different liver disorder genes. What was he thinking?

I am in remission at this point for Indolent Non-Hogdkins Lymphoma. Basically this is a very slow growing form of lymphoma. There is no cure for it. It runs through the blood stream and when a damaged cell finds a place to attach itself then it will start to grow.....very slowly and form a lump. The lump that I had removed was in my neck. It can show up in any part of the body....from the bone marrow to the bones to any organ to the lymphatic system. Once a damaged cell attaches itself it can take anywhere from 6 months to 5 years or longer for you to realize there is something there. The best way to find the abnormality is through CT/MRI. Fortunately my last CT was clean. The only thing I have is an odd shaped lymphnode in my neck that seems small. They are watching it through CT's done in 6 month intervals because it is in a location that they are unable to biopsy due to the amount of veins and nerves in the neck. It would be too risky. At this point they don't feel it is large enough to be too big of a problem and if it is cancer it has not spread.

I have GERD which is not all that uncommon. He did seem to know what this was and just wanted to argue with me about it. I told him I was not supposed to have Ibuprofen because of it (this is what my GI doc told me) and his response was that is was all GI doctors will tell you but it is not really that bad for you. Excuse me, are you a GI Specialist? I don't think so! Anyway, then he goes on to say do you have a current bleeding ulcer....well, no. Good you can have it. I told him....my GI doctor has told me under NO CIRCUMSTANCES am I to have Ibuprofen. I just had a colonoscopy and endoscopy in September. I was told once again at that time that I was to make sure not to take anything over the counter....especially any NSAIDS. I have had esophageal and rectal bleeding in the past (TMI...sorry) and a hiatal hernia. He just sat there and tried to argue with me. Once again, he did not understand the condition.....or my condition. I understand your typical GERD patient can probably get away with taking an over the counter from time to time, but when you combine it with everything else going on with me...that is a big NO NO.

Not to mention that I also have severe allergies and asthma. I had basal cell carcinoma as a child, cervical cancer, ovarian cancer, severe endometriosis, oh and that gallbladder that just stopped working one day (there are not many organs left for them to take out of me, lol). I have not been blessed with the best health....but I have had a lot of blessings. Sorry for getting way off the beaten path here. Hopefully my trip to Seattle will help to not only make me feel better (damn headache) but I will also be able to better understand what is really going on. I hope all of you are doing well.

Take care of yourselves.
Jaime

By the way....my choice of music reflects my experience at the hospital. Of course I don't feel this way about any of you. You all have been a wonderful support and I am grateful for each of you!

Hi All! I woke up this morning and decided that even though I have not been feeling good and still don't feel the greatest....I have a lot to be thankful for. The last couple of weeks, especially this week really could have gone a lot worse and so I just want to spend the day as healthy and happy as I possibly can (and seeing how I am on Morphine that only helps....I do still have the headache however, I think that is only going to take time).

I just wanted to drop in and wish all of you a very happy holiday. I want to tell you that I am especially thankful for all of you. It warms my heart to know that I have so many people out here in the online world who care for me and have been thinking of me and wishing me well. I have been very sick lately and so I have not been around to all of you but I have been thinking of each one of you. I do hope that all of you are well and I do keep you in my thoughts and prayers. I am doing my best to get to feeling better soon and as soon as I do I will be checking in on each one of you. Until then, please take care of yourselves. I will talk to you soon. Have a great turkey day! :)

Jaime

The last couple of days have been the WORST medical experience I have ever had in my life! Fortunately it has turned out that there is nothing serious going on with me. That is the one good thing to come out of all of this.....it IS only my MS that is creating all of my problems, that and this horrible headache that just won't go away no matter what anyone does.

So, to back things up a bit and make things a bit more clear......

Friday I left off with letting you all know of my impending relapse. I had finished my three day course of IV steroids and so far had not been feeling any better. Over the weekend I continued to not feel well and was starting to do worse. My memory was off, I can't remember what I did most of Saturday and my mom says I was slurring my words. I was confused and by Sunday I could not remember basic things like how to spell my son's name. I was not getting any better and in fact I was getting worse. The headache was (and still is) as bad as it had been previously and nothing seemed to be helping. Monday I called my neurologist and I was told no more steroids as I had enough and should be responding but that since I was not I should go to the ER and have them run some tests. So off to the ER I went.

Last week when I was at the ER and they started the IVSM they also did a CT which was normal (for someone with MS that is).....on Monday they did a CT and it showed what they said was a "bleed in the brain" and they were admitting me because they "think I may have had a stroke" This was at approximately 3 pm and then I did not get anymore information until 11pm. All the while my head hurts because I have this horrible headache that I have now had since the 10th and no one has done anything about it. Nice, right? NO! Not to mention that I was not given any of my regular medications until 11pm and I missed my afternoon Baclofen so my legs were spastic, my blood sugar was 67, and they put me on a low-sodium diet, which I am okay with but my potassium then dropped so I got more sick. Actually the whole time I was admitted I did not get my regular medications (it was very sporadic.....I kept asking the nurses and they would say we are waiting for the doctor to write the orders). The thing about it is that the nurses were wonderful, it was the doctors who were horrible, absolutely incompetent. If it was not for the nurses in this hospital the place would fall apart, they really are the ones keeping it running. Anyway.....So, the first day did not go good, but it was not the worst of it.

The ER staff was wonderful (including the doctors) and did all they could, were efficient and got me upstairs at 3pm. The problem was that from 3pm until almost 11pm the nurses couldn't do anything to help me because they needed orders from the hospitalist. The daytime hospitalist dropped the ball and did not get the orders to the nurse and did not come to see me. The night hospitalist had a procedure to do and so it was not until 11pm that we got any information. It was not her fault and she was very informative and helpful. She got orders in for the tests, explained that the CT showed what looks like a bleed or some kind of fluid in the brain that was not there last week. It would be consistent with a stroke or a TIA and my symptoms would be consistent with a mild stroke or a TIA but they are also consistent with a MS flare. Also, because I am on Novantrone which is cardiotoxic I am at a higher risk of a blood clot and so this could create a bleed. She ordered an echo, ultrasound of the corroded artery, EEG, and MRI/MRA. This would give a better idea of what is really going on. Plus, she said that the CT is not a really good test for looking at the specifics. All they really knew was that there is something there that was not there one week ago.

Tuesday morning they hospital staff was very efficient and I seemed to go in for one test after another starting at 5 am. The day hospitalist came in to introduce himself and let me know that hopefully he could get me discharged because he had a plane to catch cause he was going on vacation for the holidays and I would have yet another doctor if I did not go home. He then said that he would check back in on me after they got all the results. Let me tell you how impressed I was with this guy. (sarcasm, anyone) The good news of the day: they were all basically normal. The MRI/MRA of course were consistent with my typical MS stuff. And, I did NOT have a stroke or a TIA.....what happened is that I happen to have a lesion in the left side of the brain in an area where the spinal fluid enters the brain (or at least this is how the local neurologist explained it to me.....then again, this is the same neuro who said my MS did not make sense to her, and so I was referred to my current neuro in Seattle....I'll get to that in a minute). Anyway, that lesion has calcified. Apparently because of the calcification and the location of it on the CT it looked like a bleed. The doctors in the ER very much did the right thing to admit me and recommend the work up and although it was very stressful and scary to think I may have had a stroke, I am glad they were on top of it.

After the local neuro gave me the results of the various tests, she did an exam and talked to me for a bit. She told me that all my lesions are on the left side of my brain and that this just does not make any sense to her because I have marked weakness and quite a bit of numbness on my left side and that should not be happening and so there is nothing to suggest anything to do with my MS is causing my problems. I told her that my neuro in Seattle talked to me about how we can have damage that does not show up on the MRI (invisible brain damage) and she rolled her eyes at me and said "okay if you say so but that does not make sense medically and your MS should cause problems for you on your right side not your left".....this is why I started going to Seattle.....it is difficult enough to have an illness like this and to have various symptoms from day to day, but when you have a doctor who does not support you or that questions you when you can feel it.....and she can see it even with her neuro exam.....that only makes life harder! The best thing I have done in regards to my MS is start seeing my current neuro. She is a wonderful neuro who specializes in MS and I would drive back and forth to Seattle every day if that is what it took. Actually I am going to Seattle on Wednesday to see her for a follow-up and hopefully she will be able to figure something out about my headaches, or refer me to someone who will know.

Anyway, that was a little off the subject....sorry about that. So, after the local neuro left, the day time hospitalist came in and told me that I had one of two options. I could stay the night and they could give me something for the headache or I could go home and they could send me home with something. I told him that I did not get any sleep because I have this horrible headache and even though they give me meds nothing seems to be helping. As it is a hospital, everytime someone walks by I would wake up and so I thought I would sleep better at home, and I would probably be more comfortable at home as well. Next we talked options. He said he was thinking about Loratab.....why do doctors love this medication? They always want to give this for pain? Anyway, I told him that I can't take Loratab because I have NASH and we talked about the fact that I also have GERD so I can't take anything with Ibuprofen in it. I tried really hard to talk to him about my medical history and he did not want to hear it, he was nasty about it and everything I said he tried to argue about. He said he wanted to give me this injection of an advil type of medication and that even though my GI doctor would tell me not to take it, it is not a big deal, all GI docs say that but really it is safe because it is an injection and not a pill. I said okay, and told him how I get nausea really easy and would probably need something for that as well as I have had a lot of nausea and the pain meds make that worse. He said that would be important because if I have nausea and throw up then the headache will only get worse. He then told me they were going to add a blood pressure medication for me to take at bedtime. I don't have high blood pressure or anything but it will hopefully help to release some pressure in my brain and relieve the headache.

After all of that.....the nurse comes in to discharge me with what else, a RX for Loratab. What the hell was this doctor doing? My guess would be he was so busy trying to get out of the hospital and to his plane that he was not really listening when I told him I have a LIVER condition and CAN NOT have that! So the nurse calls him and guess what he says...."I am getting on a plane, she will just have to take it anyway, it won't do that much damage" My question is did this doctor even read my medical history? Does he know I have liver damage, GERD, cancer, and MS? I am on chemo, severely immunosuppressed, and he wants me to just take something knowing that it will do damage because the damage won't be that bad. What kind of doctor is this? So, the poor nurse is trying to help out and get me a new RX but there is not another doctor to sign for it until, get this.....9 pm. It was 5pm at this point. So, we had to wait until 9pm for a new RX. At 9pm when we got the new RX, instead of just giving us the RX the night hospitalist (yet one more doctor who I have never seen) comes into the room and says "I am doing you a courtesy by writing this prescription, I didn't have to do this" Hello....I am not discharged from the hospital, she is on-call, so technically I am her patient. This is not a courtesy, this is HER JOB! This really pissed me off. And, it pissed off my mom. She then said consider yourself discharged you can leave and got us a wheelchair to leave. This is the thing, she was trying to discharge me without having anyone even take out my flipping IV. What kind of doctors are these people? I have NEVER in my life had such a horrible experience.

It was as if the nurses did all the work and they did a great job but the doctors were ineffective and inefficient. In all 13 years of working in the medical field and all the years I have been a patient I have never seen anything like this. My mother actually called and filed a formal complaint today with the hospital about the two doctors from yesterday. They didn't even give me enough medications to make it through the holiday and the anti-nausea they gave me is something that the pharmacy said can only be filled with a cancer diagnosis (why they gave that to me I don't know....granted I have NHL but I am in remission and yes I am on Novantrone but I did not just have a treatment.....I tell you these doctors have some serious issues) so I had to go in to the doctor again today so they could get me a different anti-nausea medication so I could take the Morphine that they gave me. Needless to say I was able to get the anti-nausea that I needed and I have taken the meds so if I sound a little loopy....that would be why! Sorry about that. :)

I do still have a headache. I am planning on a trip to Seattle next week to see my neuro and hopefully she will be able to refer me to someone who specializes in headache problems....or maybe she will have some magic trick up her sleeve (she really is that great!) The Morphine helps, but it does not take it away completely and it is only a temporary fix. It makes me feel funny so I don't want to do that for long. More than anything I just want to feel okay again. I am SO tired of being sick.

Last Thursday I had a meeting at Nathan's school and as I was walking in I started to loose feeling in my left leg. Nathan's case manager kind of reached for me as to hold me up and asked if I was okay. At the same time my eyesight went out for a bit....maybe 5-10 minutes. I told her I was okay and we went into the meeting. At this point I really did not think anything of it. I had been doing so well. Everything was going well with the fundraiser and as far as I could tell I had been responding well to the Novantrone. Basically all good things to report to my neuro.....or at least so I thought.

Friday rolls around and I am feeling fine. We head to Seattle for my appointment and well, the trip over is good and the trip back is a nightmare (see A VERY Long Trip). All that numbness and headache was indeed a sign of impounding relapse. Saturday and Sunday the numbness and headache continued, only I still did not think much of it as I had just seen my neurologist and had been doing so well. Dare I say I had jinxed myself?

Monday I had an appointment scheduled for a follow-up with my PCP. When I went in for the appointment I could barely walk in to the clinic as the numbness was so severe and I could hardly see out of my left eye due to the pain from my headache. The nurse came to the waiting room and asked if they could reschedule because the doctor had something come up. She said she saw me come in and was worried as I was having such a hard time. She then went to talk to the doctor and they had my dad come pick me up to take me in to the ER for treatment. Once at the ER I was evaluated and given something for the headache.....only I did not respond and got even more sick. The doctor called my neuro and they determined I am having a relapse and started me on a course of IVSM.

Tuesday I went back in for another course of IVSM. My headache would not stop and continued to get worse. I notified the nurse about it and so she contacted the doctor who ordered some IV medications......which I did not respond well to. Unfortunately I ended up back in the hospital for most of the day. The fortunate part is that the ER doc who saw me the day before was on call and so he was able to see me and make adjustments as needed. He tried to give me Imitrex for the headache thinking that just maybe it would help....seeing how it was behaving like a migraine.....but it didn't do a whole lot. It helped a little, more than anything made me really jittery. He then gave me a prescription for Relpax which did seem to help. That and a cane.

It is Friday now and I seem to have some how lost track of a couple of days. I am still numb, still weak, my head is still pounding, and I still don't feel good. Hopefully after some more rest I will be feeling back to my old self. :) I hope you all have a good weekend. Take care.

Thanks to your calls to legislators, visits to district offices, and letters to the editor, the Centers for Medicare and Medicaid Services (CMS) has revised a potentially damaging policy on its coverage of power mobility devices.

“MS activists led the charge in responding to this issue. I am extremely proud of your diligent grassroots advocacy,” Joyce Nelson, president and CEO of the National MS Society, said. “For people with multiple sclerosis and other severe disabilities who depend on Medicare, this is a significant victory.”

You raised your voice when this new Medicare policy inappropriately used an arbitrary “stand, pivot, and transfer” test — not the functional needs of the individual, as determined by medical experts — to decide the quality of the mobility device that is covered. You took action again when the same policy reduced reimbursement to suppliers of those devices and threatened to limit access to wheelchairs for all beneficiaries no matter their eligibility.

Your lawmakers heard you. Legislators from Arkansas, Illinois, Kentucky, Maryland, Ohio, Pennsylvania, South Dakota, and other states effectively pressured CMS to change its policy. If you know that your legislator responded to this issue, remember to thank them.

The new policy now will allow physicians to prescribe the proper mobility device for their patients and the new fee schedule will ensure that the supply of powered wheelchairs meets the demand. Your incredible activism has helped to completely change this flawed policy and will allow people with MS to receive the equipment they need to maintain their mobility and quality of life.

To read the new policy, visit the CMS Web site.

Thank you for your work to make a positive change for people with MS.

So my appointment with my neurologist was yesterday morning. When I got up in the morning I checked the pass reports just to make sure we were not going to have any problems. Forecast stated that there were no restrictions, possible 4-6 inches of snow, some slush on roadway. Well, this looks better than it did the day before I thought....so we should be just fine, right?

The trip over was just fine. We left a 7am just to make sure we would have plenty of time. The rain started just before we hit Ellensburg. The roads were good though. It was a bit slow across the top of Snoqualmie Pass as it was snowing and the road was slushy, but it was not bad at all. We followed the road report and it claimed the same was predicted. So we were not too worried, after all we were turning around and going right home after the appointment.

My appointment went well. She did the typical exam, watched me walk, and we talked about how I am doing with the Novantrone. I told her about how I felt I have had an increase in my overall level of energy. That there are still some days I don't have any energy but that it is definitely getting better and for me that is huge. I can deal with the other symptoms as long as I can get up in the morning and take care of the things I need to do during the day. For me the fatigue is one of the worse symptoms to have.....maybe not the most bothersome (pain, numbness sucks.....but they come and go for me). So, I am to continue with the Novantrone. Next dose is scheduled for January. She is going to send a letter to my Oncologist (as he is writing orders so that I can do the chemo at the local hospital) and he will follow me, do the blood work, and the echo over the winter and then I return to see her in May, just after my April dose.

Next we headed over to Pikes Place Market to pick up Nate's board. It is really cool. The top (where the grip is) has Nate written in this cool Asian graffiti. The bottom of the board is this green color with black along the edge. There is like paint drops of white and red all over the board and the middle has a Bruce Lee sketch and then other Asian characters and markings. Anyway, it is pretty cool. I think Nate will really like it. It is not exactly what I was thinking of when I ordered it....but I am sure Nate will love it. I did not even tell him that Nate was into Asian art....a few years ago he even took a class to learn to read and write Mandarin. :) While I was there I also picked up a candle as Dan's brother makes homemade candles. My dad just dropped me off, drove around the block and picked me back up.....so I was really only there maybe 5 minutes.

We then hit the road to go home and as we hit the North Bend area, we were able to access the road report. Unfortunately we found out we would not be able to go back the way we came. There were blizzard like conditions across the pass and they were considering closing it. At that time they were requiring traction tires and chains (and of course we did not have either....only all season radials, as we don't have snow problems in the Tri-Cities). So, we considered our options....we could wait and see if it would reopen or head south and take the LONG way around. Well, Nate stayed with a friend and there was no way to know if we would be able to get across so we decided to head south. We were hoping that maybe one of the other passes would be open. They were not. We ended up having to drive down to Portland and then across I-84 to Umatilla, get on I-82 and that takes us to the Tri-Cities. An extra 230 miles out of the way. It was almost 11pm when I got home last night. What a LONG trip that was. It rained all the way from Ellensburg on the way, snowed on the pass, and then rained again from North Bend until we hit The Dalles.

The trip itself was not that bad......what sucked is that about Olympia I started to develop the worst headache. I don't usually take Tylenol but that is all my dad had in the car, it did nothing to help. We stopped and I got some dark chocolate and a pop, that did not help. A little further down the road we stopped and I got a mocha. I never drink coffee but nothing was working and I was in severe pain. It felt like someone hit me several times over the head with a frying pan (or at least I imagine that is how it would feel to have someone do that). Nothing was working, I took off my glasses and closed me eyes. My left side was going numb as well. I thought this was just from sitting in the car for so long. Somewhere between Portland and The Dalles we stopped at the rest stop (it was dark, and by this time I was so sick I couldn't tell where we were). It was here that I realized this was a full-blown migraine. I couldn't get to the bathroom quick enough as I needed to throw up. I was so weak that I could barely walk without feeling like I would just fall over. This was not a fun trip home.

Eventually I was able to get some sleep and when I got home I went right to bed. This morning my left arm is still a bit numb and my legs are still week. My headache is still here but it is not as bad as it was last night (thank goodness). Today is the Veteran's Day parade and my wonderful father is out selling the CD for me, as I just can't seem to function all that well. Fortunately we have added more days to sell out at Wal-mart in Richland (the 20, 21, 25th for sure and they told us we can even have the 24th but we just have to get the okay from one person who was not there at the time). This would be great as the 24th is the biggest shopping day of the year.

Anyway, I am off to take a pill as my head is starting to hurt again. I hope all of you have a great weekend. Take care. :)

I am having a day today....you know the kind....there is a number of things that I really wanted to do today and I am just SO tired. I have some housework that I would like to do, I need to do laundry, I wanted to go grocery shopping (although this can wait a few days). I have a feeling not much will actually get done.

I did not sleep well last night. It was not that I was sick or that I was having a lot of problems with my MS.....I was just wide awake. I have been doing better with my fatigue over the last couple of weeks, but I think maybe I have been over doing things....I am just not sure. Today it seems that it is all catching up to me. Fortunately I don't HAVE to do a lot today. It will not take much for me to pick up around the house (basic house cleaning) and the laundry and grocery shopping CAN wait for a couple more days.

Tomorrow I will be traveling to Seattle for an appointment with my neurologist. It is a follow-up to see how things are going with the Novantrone. I have noticed some improvements, some symptoms that have stayed the same, and some that have gotten worse. I think with any new medication it can take time for things to get better. It takes time to really know if it is working.

I feel as if my level of fatigue has gotten better, as I seem to be able to get more done without being completely wiped out.....now I just have to learn not to over do it when I have energy. That is much easier said than done. I also don't seem to be having as many headaches or eye pain. All good news. :) I still seem to be getting sharp pains and spasms however, but they are not any worse than they were. What I have noticed getting worse is my numbness in my legs and my balance. It feels like I am walking on an air mattress (does that make sense to any of you?) I will do my best to describe it. When I step down it feels as if I don't actually hit the ground and my legs are a bit wobbly. I am not really dizzy, but I feel off.......maybe it is my depth perception. I am not sure. I also notice that when I get up from sitting that my body seems to freeze. It hurts to stand up. Is this MS related? I don't know, but it seems to me that maybe it is more in the bones......like arthritis or something. Whatever it is it seems that the cold weather only makes it worse. Hmm....what is with our health and the changing seasons? Always something.

It will be nice to have an appointment where I am able to report some positive effects of the medication I am on. That has not happened in quite a while. Really, the only thing I need to worry about is the weather. I checked the road report and it is supposed to be raining and snowing on the pass. The report shows an accumulation of 4-8 inches of snow tonight and the temps in the high 20's to low 30's. Fortunately the snow level is supposed to be around 3000 ft and the top of the pass is 3100 feet, so we should be okay. :) We just might have to take it slow, and for that reason we are leaving at 7am (which will give us 4 1/2 hours to get there......it normally takes 3 1/2).

Plus, I am picking up Nate's Christmas present while I am there....I am excited to see how it turned out. When I was in Seattle in February I met a guy (Dan) who does custom art work and designs skateboards. I bought Nate a pin on that visit and then took him to the market (His stand is at Pikes Place Market.....1976 Art....if you go to Seattle check it out!) Nate thought it was really cool. So, I decided to get Nate a custom skateboard. Dan is doing all original artwork on the bottom of the board and putting Nate's name across the top. I just know Nate will love it! :)

Well, I hope all of you are doing well and having a great week. Take care of yourself and have a happy Friday.

I was just over at Suzy's" blog. Please keep her son in your prayers as he is going through some things right now. Thanks.

After meeting so many wonderful people over the last couple of weeks of doing this fundraiser, who have just been diagnosed (or at least within the last couple of years), I realized that maybe I should start up a support group in my area for people who are newly diagnosed.

I know I mentioned this the other day, but I think it would be a great thing to have. I have had many people who have MS and their family members mention that they feel very overwhelmed. It is hard enough to wrap your mind around being diagnosed but there is so many questions to go along with it. Where to go for information and/or help? Who are the doctors in the area that specialize? What if my insurance company won't pay for my meds....how do I get them? I feel like between my experience with MS as a patient and my experience working in the medical field that I can really help people.

I have found that this online community is a great help. Not everyone feels comfortable talking about their experiences online, heck it can be even more difficult in person. I would hope that we could create an atmosphere that allows us to come together and discuss MS if one would wish, but also to have a place to come and just be okay with being a "member of this club" if you will. MS can be a very lonely diagnosis if you don't have a support system. Most people have a support system within their family and friends, but sometimes it can be difficult for them to relate and so it is also important to have people who can relate because they are going through the same thing. I guess I will just have to see how it goes.....I think it is important that everyone is comfortable!

So, if you are reading this and you live here locally (Richland, Pasco, Kennewick) let me know if you would attend a support group if I were to start one. I think it is important that we each live our own lives and not get so wrapped up in our illness and so maybe meeting once a month would be appropriate. Whether you live here or not, please leave me a comment and let me know about any experiences you have had with support groups (I want to hear both good and bad). If you have any suggestions on how to make this the best experience possible, please let me know. I hope to hear from all of you.....especially if you live here locally.

Take care.
Jaime

After a bit of a rocky beginning to the weekend, things started to look up real soon. We were scheduled to sell the CD's at the Pasco Wal-mart on Saturday and Sunday, but there was some scheduling conflicts. Someone accidentally booked another organization at the same time (oh well, mistakes happen). They do have us down for next weekend though, so that is good. :) Fortunately the Richland Safeway saved the day....or should I say days. They let us set up at the store both Saturday and Sunday! :)

On the way to the Richland Safeway I got this idea to check with the local music stores to see if I could get them to buy a few CD's to promote it in their stores. I called information for the phone number to the Richland Hastings store and it was unlisted, so I took a bunch of CD's to the store, talked to the manager and sure enough.....he bought 5, with the agreement that when they sell them they will buy some more! Yay! I then found out that there is another Hastings in Kennewick. I called and spoke to the manager there and they are buying 9 of them. As of today we have collected $1875 for the fundraiser.

My dad also had a great idea and we are hoping that it will not only be a way to raise a lot of money for the MSAA, but that it will be a great way to educate more people. This upcoming Saturday is Veteran's Day. The City of West Richland is having a parade and chili feed. Apparently it is a big deal in this area. My dad (being a veteran himself) got a hold of the City and they are letting us set up a table at the park (where the parade starts and where they are holding the chili feed). I believe the parade starts at 9:30 but we will be setting up at 9am. It will only last for a few hours, but then we can head out to the Wal-mart. It should prove to be a great weekend!

I think winter has arrived. Officially winter is supposed to be as of November 21st, however I think it has arrived. The last few days it has been really cold out and today it has been raining. As much as I don't look forward to the cold weather I do love this time of year. It is the beginning of the holiday season, which is my favorite time of year. I love to decorate my house, sit in front of the fireplace with a nice hot cup of hot chocolate, and stay up late with Nathan during his winter break hanging out and just having fun. I can't think of anything that I don't love when it comes to the holidays. It is a time of year to look at what is important in our lives and I think we appreciate what we have more at this time of year. At least I know I do. Granted I do my best to be grateful for all I have and how I have been blessed all year long, but there is just something about the holidays.

Today has been a great day and something hit me today. I have always believed that everything happens for a reason, but becoming so involved in this fundraiser has really opened my eyes. I have always tried to be active with various organizations and since I was younger I tried to donate when I was able, and of course this is something that I wanted to do because I know first hand what MS does to a person but today it occurred to me that maybe the reason I have this illness is so that I can help other people who have it. Not necessarily through the fundraiser (although I know that helps as well) but because I have now met many people in this area with MS who have recently been diagnosed or gotten to a point with their MS that they are having to make some changes in their life and they seem to feel lost and overwhelmed.

I have had some great conversations with many of these people and their family members and I have been able to give them information that will hopefully help them. I have been blessed with the knowledge of how to deal with some of the more frustrating aspects of finding out you have an illness (getting the resources needed and dealing with the insurance side of things) because I worked in the medical field for many years and I dealt with insurance companies, at one point even working to get patients who were not technically eligible for coverage covered. Over the last week or so I have had a number of people tell me that they don't even know where to go or what to do. I realized that maybe what I need to do is use my experience to help these people see what their options are and hopefully make life a little less confusing.....maybe with the resources through the MSAA I can even set up a support group. I think that I would like to set up a support group for people who are newly diagnosed and then another one for anyone with MS.

I remember when I was first diagnosed it was recommended that I go to a support group. I went once and never went back. It was very uncomfortable and many of the people were much more progressive than I was. It was a reality that I did not want to see....people in wheelchair's, using canes. At the time of my diagnosis I was not ready to face that and I did not want to be around people who were more progressive because then I would have to face the idea that one day I might be in that same position. I just did not want to think about it. Now, I have accepted what comes from day to day and I try to go with it, but it was hard enough to wrap my head around being diagnosed let alone anything else. This is why I think it would be great to have a support group that is specifically for people who have just been diagnosed (or maybe diagnosed within the last couple of years). I would like to create a comfortable setting where people could come and not feel like they never want to return. Having support is very important with this illness and although many times our support system is family and friends (as it should be) it is equally important to have people who relate to the day to day struggles of this kind of illness. I think it is important to not get lost in the illness (and many people do at the beginning), it would be nice to get out the resources and information needed so that we can all live our lives to the fullest even with this illness. Anyway, I have left a message for Malcom and I am excited to see what comes from it.

So enough about that. The fundraiser is going well....we have collected somewhere around $1300 (I am not sure the exact number as my dad has the money box and CD's at his house). Nathan is doing much better both in school and he's over his cold, although I think that is in part because he gave it to me! :) Oh well....you know how it is, we get within a 5 mile radius of someone with the flu or a cold and we are sure to get it (okay....5 miles is exaggerated, but sometimes it feels that way). LOL I have been spending all of my time outside of the fundraiser drinking cough syrup, herbal tea, and relaxing in front of my fireplace and TV. Over all I am doing quite well though, which I am happy to report. It seems this Novantrone just might be the wonder drug after all (now I just hope the cold weather does not do me in....keeping my fingers crossed on this one).

Well, I apologize now for the length of this post as I know it is a long one. I hope all of you are doing well. Take care of yourselves and stay warm.....it's COLD outside.