Multiple Sclerosis Treatment 6

Last Thursday was treatment six and we used a different injection site (since I can only use the one leg) which was the upper shoulder area. I was nervous because some how it seemed like a more vulnerable area, maybe because there isn't much substance there like the thigh, but I was in for a surprise. It didn't hurt as much and the next day I worked! I worked all day! Did the shoulder have something to do with it, or perhaps my body is getting used to the medicine? I don't know but if you recall, the day after all of the other injections I was wiped out on the couch the whole day. But this time I was able to keep working on my animation project, which is finished now. You can watch the animation here. This week there were some hot days here in Seattle and it really seemed to get to me, there is some literature suggesting that heat seems to rile up folks with MS - could be. I have this spray bottle that I spray my dog Tearsa with when it's summer time to keep her cool, now we are both using it : ) Today fortunately is a cooler day. Hope your day is lovely.

Hope you had a happy Summer Solstice and MS treatment #5

I was right! Last Thursday was my 5th injection and I woke up the next day and took 4 Aleve right away and it was much better in regards to pain. For some reason I still am wiped out on the couch that whole next day. I tried to work and I was just to tired, to animate or even email - can you say 'lethargy"? My arms feel too tired to click my computer mouse! But when I woke up on Saturday I was back to myself. I have heard that sometimes the side effects can take 4 months to acclimate to, so perhaps the day after will get better one day. Hope you are all having a lovely summer (my wish for you here).

Ms: treatment 4

Last Thursday was my 4th injection. The next morning I was trying to alleviate some of the tummy ache I get afterwards by taking less Aleve. That was my big mistake. It wasn't long before I realized I should have taken the full dose, tummy ache or not (and taking it later doesn't fix it). The head and body ache was not an even trade off and I now know this for my next injection which is late tonight. A lesson learned! Things should be better this time. Well, I've got to get back to hydrating myself now, an all day process on the injection days. And thank you everyone for your continued support.

A very special thank you

We can't believe what has happened. After my blog post in which I mentioned the strange life forms in our bathroom, Jim's brother Bob without hesitation offered to take care of it! Bob, there are no words to describe our gratitude. You have the BIGGEST heart. I made this picture of a little Bob and Jim as a small token of my appreciation (you could check center to print & frame). Bob you are a generous and kind brother. We love you so very much. Hugs to you and the rest of the family. Scroll below to view a thank you for the lovely Susan...

Click image to enlarge:


Thank you dear and kind Susan (click to enlarge):

Update 6.11.08 Gina's 3nd MS treatment

Last Thursday was my third injection, (tomorrow night will be my fourth) and it was once again bearable! There are muscle pains and a little upset tummy that occur through out the week, but again, bearable. I think I've got the method figure out, as long as I follow the preparations, I fare well. So things are feeling more doable than that very first time, it's a relief, and now I can just try to move forward. More later, got animation work to do, yippy!

Update 6.3.08 Gina's 2nd MS treatment

Last Thursday I had my second MS treatment. This time I was better prepared, I really hydrated myself the whole day beforehand, I took Aleve an hour ahead of time, (which is apparently the brand of choice), and the doctor had prescribed me something for my nausea so I took that 1/2 hour before. This time I was able to take the injection right before bed (I also had Tylenol pm to hopefully stay in there!) and since I had to switch injection sites I had to do it in my left leg which is my injured leg. We had asked about this before and we thought it would be okay, but now we are not sure that the depth of the internal injury was perhaps understood. Anyway, so we get it done and immediately it's not acting as well as the one the week before had. It doesn't want to stop bleeding and I can see a big bruise rising immediately. The one the week before was virtually invisible. We get it under control and I go on to bed. And guess what, I didn't wake up until 11 the next morning and my body seemed pretty much mine. Boy was I a sight, quietly ecstatic (I didn't want to tempt fate), I kept bending my arms up to my face, hands curled up on my cheeks and kept peeking these "I just got away with something" smiles at Jim. Did I really just wake up and not feel the same - well how should I put it, mac truck feeling, as I did the week before? So far so amazed. Now there were muscle aches (they feel like charlie horses that move about the body) but it was more what I had originally expected and certainly I could deal with. I did start feeling the nausea kick in the next day so I took one of the pills for it, but it made me sleep for 4 hours! So I didn't take it the next day or any day after, I do feel some of it along with a sort of burning - but I'd rather be awake, because then I can do stuff!

But now the bruise on my thigh was really dark purple and seem to have a tail on it (looks kind of like a big tadpole fish - I tried to tell him he could swim away but he likes it where he is : ). The Avonex injection is IM (intramuscular) which goes straight into the muscle (remember when you were a child) and should not bruise like intravenous (which is in your vein like in your elbow pit) or subcutaneous (which goes in the fatty layer just under the skin). In fact one the bragging rights from Avonex is the fact that there is no injection site reaction. It didn't hurt or anything so I wasn't worried about that but I began to wonder if the injection did go into some scar tissue in my injured leg? Even further, I wondered if this perhaps affected the delivery of the medication? Could this have been why I didn't have the same amount of symptoms as I had last time? We decided to call. The Avonex people thought that there might be a connection there because scar tissue would not absorb as well and recommended calling my neurologist and not using that leg. So I called the neurologist and was referred to the nurse, who I then called and she agreed that I shouldn't use that leg. So I'll be getting clever with my other one, they tell you to use the top of your thigh or that you can use the side of your thigh, but I asked if I could use the top of my thigh in two places (and the side in two as well) and she said yes. You can also use the tops of the shoulder but somehow it doesn't sound appealing (like any of it does right), because it is a smaller muscle than the thigh. But perhaps somewhere down the line I will become a daredevil and try it out. I don't think I have to worry about the areas getting overworked just yet, I'm still an MS newbie. The nurse said that probably something did get hit down there, like a capillary or vein or something (I say "or something" like there's a whole lot of further options! - how many more things are swimming around in there!). But she said, that its OK and that it will improve over time. I asked her about the medication being delivered properly and she said that it would have become absorbed eventually, and I of course wanted her to tell me that next week would go as smoothly as this week and she said she can't promise that but thinks I am on the right track. Oh and Jim and I have been using the wii fit to get our exercise and it's really great, it's right here in the house making it very convenient and it's a lot of fun, we've really been enjoying it. We give it 4 thumbs up. So that's the latest report folks, much love to everyone!

I had my first multiple sclerosis treatment

Wednesday 5.28.2008

I talked on the phone with the nurse Wednesday the 21rst, the day before she was going to come over and instruct us both on how the medication will work. She told us in preparation that I should be hydrated and take Tylenol before she arrived. We also needed to remove the medication from the fridge a half hour beforehand so that it was at room temperature, apparently if it's cold the side effects are more severe. I asked to have the actual administration right before bed because I was told that's the best way to deal with the side effects. But she said we should do it during our home visit the next day instead so we could monitor how and when things hit me, if they do - since it is my first treatment.

So I was bright eyed and bushy tailed (bushy? well maybe not that) for the nurse when she came over at 2pm the next day (Thursday the 22nd). She went over some things with us, tips for airport travel (you have to take a portable cooler) and how to change the day you take the injection if you need to (one day later or up to two days before) and by 3:30 it was time for the injection. Considering that I didn't want to look at it while it was happening, I was fortunate enough to have my hubby Jim do it for me, and a fine job he did with the right thigh as a target. I'm supposed to switch every week, from one thigh to the other or to the outside of my shoulders.

By the time she left I didn't feel a thing. Around 5pm I could feel something happening, it began with a minor headache and body tire and graduated to more substantial feeling side effects. I had started on the couch but had to migrate to the bed, from there unfortunately the body/muscle ache became quite unbearable. Seems like every nanosecond (yes I said nano!) I kept tossing around trying to find a manageable position but could not attain it. My body and my head were having a severe reaction. By this time I was feeling quite nauseous too. We called the nurse who had come over earlier (she works with/for the drug manufacturer) and she said to take Ibuprofen along with the Tylenol. I did but It didn't help. So we called the neurologists office (must have been around 9:30) and they were trying to reach the on call doctor. Apparently for some reason they were trying to page the wrong doctor and it wasn't until 12:30 am that I got a call back.

He said he could call something in but that it was late so I probably couldn't pick anything up, but fortunately I had called my Mom earlier (poor Mom by the time I talked to her I had really been languishing for some time) and she told me about some Rite Aides and Walgreens having 24 hour pharmacies (thank you Mom - love you). So while we were on the phone Jim looked one up and the doctor said he would call something in. He also said that I should be taking double doses of the Ibuprofen, which would be around 800 mgs, or four pills. So I did. The prescription ended up being a generic vicodin which I have had before and guess what, makes me nauseous - which I felt so much already that I didn't want to take it after all. So I fell asleep around 2am and woke up with muscle pain at 7am. In fact I had been dreaming about it. In my dream I was bookmarking the best body positions to alleviate the pain - like you would bookmark a favorite webpage into your internet browser - but I was really moving around to save them in my dream, which I think I was probably really doing. I couldn't fall back to sleep for an hour but I decided to take more Ibuprofen and then I did.

So the next day (Friday the 23rd) I was wiped out and while I had muscle aches that bounced around my body in pangs, it was not like the night before and I was so happy about that. But I remained nauseous and had no appetite at all as well as being glued to the couch, just real tired. I didn't want to email or phone call so I decided that I was going to call both the neurologist and the 800 # for Avonex on Monday, but it turned out that Monday was memorial day so I had to wait. My symptoms remained, no energy, on the couch, muscle pangs (but manageable) very nauseous with zero appetite. In fact I didn't start feeling better until yesterday (Tuesday the 27th). What! Me no animate!! Me no craft!
I called on yesterday and Avonex couldn't really do anything for me but they did have me describe my experiences to a "drug safety associate" who gathers information to provide to the FDA. So I then called the neurologist but she wasn't in, a nurse took the information from me and said she would want to talk to the doctor first but that she wouldn't be back until Wed, but only for a half day. So Wednesday is today and I still hadn't heard back by the time I woke up so I called in and left my information and then the doctor herself returned my call, and let me tell you I was getting worried because with all this phone tag, guess what tomorrow is, Thursday, the day of my next injection! I really felt like I needed to go into it feeling like something was different so that I could be hopeful and not want to just run away from it - which I don't want to, I do fully understand why I need to do this.

So I told the doctor what was happening and she asked me if I wanted to switch medications, she said that they are all around the 40% range for cutting disability for two or three years and that one of the other options - copaxone wasn't even a interferon, so the effects might be more tolerable. But I have read that while all the treatments reduce flare-ups that only Avonex both slows physical disability and is effective after the first attack. Another factor is that Avonex is the only one that is a once a week shot unlike the others, which can be three shots per week up to one shot every day.

Now it is true that some people find relief in time from the severity of their side effects. So I'm going to try and hang in there, she said if I don't feel better after a month and it is still dramatically affecting my quality of life then we are defeating the purpose by treating the ms this way and should switch to something else. In the meantime she prescribed an anti nausea medication (it's actually one that Jim used to take when he was going through the stem cell transplants) - which I am glad for because I could not get anything to work. I had asked her if there was a non narcotic medication that didn't have nausea as a side effect and she said to take what the on call doctor ordered if I need it. Of course I'd rather not but if I have to, as Jim pointed out, the anti nausea pill should counter that effect. And this time I will be taking the shot right before I go to sleep, hopefully I stay that way, we'll see how it goes.

Of course I feel better today, not 100% - still a bit tired with some aches and my stomach is a little sensitive but for the most part I am better, I am able to write this blog now - I wouldn't have been able to do it this past week, odd for a 120% your cybergeek Nanogirl, I know ... but tomorrow I'll be starting all over again. I need more time... I need that universal remote like in the movie Click, but the problem is, if you fast forward through time you are skipping right through it all, and of course you never know what happened, you might just miss something wonderful - so I guess I wouldn't really use it. Click here to see the Click movie trailer.

I have made a lot of changes. Although this last week I didn't feel much like eating - previous to that, (since I was diagnosed) I decided to change my eating habits. I've switched my oil to olive, my Splenda to Stevia and my diet sodas for Vita water and Life water (they don't use synthetic sugars and have plenty of vitamins). I am going to try and get as much organic food as possible and stay away from anything questionable. I'm still sorting all of this out and it will take time before I discover all my preferences, I'm still experimenting with some of it. I also asked Jim to go with me on this and I think he will, after the cupboards are all clear, he's just still cleaning some of them out for us : )

I've been taking vitamins although I did back off of the really great antioxidant Alpha Lipoic Acid over the last week because I read that one of the side effects is nausea and of course I didn't want to add fuel to the fire. I also received my new "Wii Fit" that works in conjunction with my Wii game console. You stand on a board and do exercises all the while following the program on your TV and it detects all your motion - and can correct you. Click here to see a commercial. It came yesterday, so I was able to set it up and do a little bit but I was still too tired to do much with it. It has Yoga (with a personal trainer), and strength training and all sorts of body conscious games and work outs. I am hoping that it is a convenience especially for those times when I am stuck (I say stuck but you know I love it) back in the office working for extended periods of time and the Seattle rains are not exactly calling me to go outside for a walk. I am excited to do more with it and make it a routine, Jim is going to do it too.

I'm trying to get more fresh air (our house doesn't have any vents) and sunshine too. Especially considering the fact that there may be this link between Vit D deficiency in MS, and the sun is a great source for it. Although it is difficult to get sunshine here in Seattle, but when I see it I run out to the backyard with my poochie. She likes to sunbathe too.

I've also been wondering about the mold in the bathroom. I've been worried about this since Jim got sick, and I have read links between mold and both multiple myeloma (as well as other cancers) and multiple sclerosis. We have had things happening in there since it was redone (right before I got here in 98). The plumbing was not up to par (wet around the base of the toilet ) leaving some sort of leaking that has displayed itself as black stuff coming up around the edges of the poorly laid floor (the linoleum itself rising and curling). And the body of floor itself has wet areas, causing cracks and openings (you can't go barefoot in there) and this has continued to expand - the spots are larger and they are spreading across the room. Then there is some kind of green that keeps re-appearing under and around the faucets from the leaky sink plumbing. And the shower has it's own variation that's pink and that may be leaking as well, I really don't know. I'm not entirely sure what all the problems and origins are. Black, green and pink, it's like a rainbow... although some rainbows are just better than others. I'm sure the lack of vents isn't helping that situation either. We don't know the extent of the problems and it's difficult because I know that if it spreads it could take over the whole house so it would be better if we got it now but unfortunately we don't have the money to have the floors and everything pulled up and new stuff laid down. Not only that I think we would have to go to a hotel for a while due to the exposure (which in both of our conditions we need to be careful about), and that would require even more invisible money that we don't have. So I can't change everything I want to, some things are easier to change than others.

I do want to say in regards to this last week, that many people have different experiences, I've read a huge variable of Avonex side effects from person to person online. So my experiences, while they might be the same as some others, they are not the same for everyone. Indeed some people have it a whole lot better than this. I really wish I could tell you it was different for me, but this is the truth and considering I didn't feel so prepared for this I hope that for anyone who is researching this that they might be more so if they know what they "might" expect - if only to be better prepared. So if this helps anyone else then that would be swell.

Oh and Jim is continuing to do well! We've got a real Freaky Friday situation here don't we, a real role reversal. Together we make it through, we are both very happy to have each other. I am a very lucky monkey ~ love you Jim. And much love and hugs to everyone for your continued support, bookmark the blog, I'll be keeping you updated.