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Mixed Feelings About Avonex...A Trip to Seattle...& Harry Potter MS News!

It is Sunday and for once I actually feel pretty good! That has to do with the fact that I did not take my Avonex this week. I have been so conflicted on what to do about it. On one hand I understand why my neurologist wants me to be on this medication. I tried Copaxone and had no success with it. I did not have a whole lot of side effects, only I just did not get any better and continued to have flares. So, now I am on Avonex. The problem with the Avonex is when I do the injection I am bedridden for about 48 hours. It is horrible (and that is assuming I don't have a bad reaction to it, those weeks I have been stuck in bed for up to 3 or 4 days).

Usually I would do my injection on Fridays so that I can just lay low over the weekend so that when things pop up during the week it is not a big deal, but I didn't do it because yesterday was my sister's birthday and I wanted to spend some time with her. I don't get to see her much anymore (she is mentally disabled and I used to take care of her but now that I have gotten sick, she has moved into a group home. She loves it there, but I don't get to see her as much), so I really wanted to take advantage of the time together. By time I got home last night it was late and I knew that if I did the injection I would not make it to my appointments on Monday. I have 4 appointments to be at. With the amount of fatigue I have on my good days I would be lucky to have the energy to do that kind of running around, let alone what I would feel like just 36 hours after my injection. I would be lucky if I could walk from the amount of pain I am usually in due to the injection!

So, now I am thinking I feel pretty good not taking this injection. Granted, I have all of the symptoms and usual things, and yes I have pain, but it is not the same pain that I get with the injection. You know the one that goes down to the core of your bones, makes every inch of your body hurt. I am not getting the flu or chills anymore, just the pain. Hmm...Maybe this has something to do with the bone isoenzymes being elevated. Do any of you who are on Avonex have this kind of pain? I mean, for me this is strange because I typically have a very high pain tolerance. I mean, I went through child birth with no meds (did not even cuss or scream, my mom was proud), had oral surgery (including all 4 wisdom teeth removed) with little meds and returned to work 3 days later. I am sure you can all relate, we all have painful moments in our lives. I have been in various situations where I have had to take a high dose of pain, and some how this is just different. It is not that I can't take the pain at all, I can, it just wipes me out so I can't function and I have to take pain medicine to help, as long as I stay in bed and use wedge pillows (helps to keep pressure off my back and legs) I do okay.

Right now I am just so busy with the end of the month coming and my insurance ending. I have applied with a different insurance company (actually will have double coverage available) and so I am trying to get things squared away there (it could take a couple, three months for the coverage to start) and I need to make sure I have all of my prescriptions covered and I have been in to see all of my doctor's this month just in case it does take a little while to get everything situated. I got the majority of it taken care of over the last month but there have been some abnormal test results pop up (last minute things to take care of).

I am tired, but I am always tired, that is nothing new to me. I have been tired non-stop for about 8 years now. Somehow I have just learned to live with being tired all the time. That is just a part of the multiple medical problems I have somehow been blessed with. I see my neurologist on Friday and am going to talk to her about where my illness is. (does that make sense?) I recently read somewhere that if you have a symptom that continues non-stop for a certain period of time without any kind of relief (i.e. with medication) that is considered a flare. Many of my symptoms, even on medications have been continuous since my flare in February. Don't get me wrong, I do feel much better than I did back in February/March. That was a nightmare. That was the worse flare that I have ever had, but there are some symptoms that seem to still be lingering around. I guess I wonder if that means those symptoms have become permanent damage. When I was diagnosed, I was told I have RRMS, but I have had one relapse after another and the symptoms have only gotten stronger and worse, so have I progressed? Those are the types of questions I am curious about. I read that the average person has 1-2 flares a year and since my diagnosis I have had more than that. My first year (2004) was not bad, I had the 1, but 2005 I had 3 and this year I have already had 2, possibly 3 depending on what has really been going on with me and it is only April. It just never seems to end or get better. I know it will get better though. That is the thing, isn't it? The constant battle of ups & downs!

I am hoping my trip to Seattle will be one filled with knowledge and that I can get to relax a bit. Of course, as I mentioned before I am seeing my neurologist, but I am also going to to NMSS dinner seminar Girl's Night Out. I will post the information here, when I return. I am hoping to convince my dad to let me take his digital camera so that I can take some pictures of my trip and post them as I go. There is nothing more beautiful than the drive to Seattle (okay, maybe there is, but it is beautiful this time of year!) I think my sister is going to go with me, and Justin may join us also (although he will not be able to attend the dinner). We will stay the night Thursday night, go to my appointment on Friday and then spend the day in Seattle Friday. We may just make a weekend out of it if the weather is nice. It should be this time of year. The last couple of trips I have made it was gorgeous! My sister has not been to Pikes Place in a long time so she would like to go there to do some shopping and maybe we will have lunch. If Nate is really good I may have to take his skateboard with me too! The last time I was there I met a guy who does artwork and designs skateboards, snowboards, etc. He told me he would do something original for Nate the next time we were in town. His name is Dan Gregory and he has a booth at Pikes Place. His business is called 1976 its just art. I called to see if he has a website, but he said it won't be ready until July. Last time we were there he did not have the time to do it, so maybe this time we will get lucky! We will have to see. It would be nice to get Nate something. Summer is coming after all!

Speaking of Nate....Harry Potter happens to be one of his all time favorites and the author, J.K. Rowling is doing a bit of good for MS'ers, as you may know her mother had MS. She and the MS Society in Scotland are funding a new Research Centre in the UK!

Well, I hope you all had a nice Sunday Morning! I hope the rest of your day goes well too. Take care.


Iain Dughlais said...

I get similar reactions to rebif. It only lasted about 7 months. It got better each week. But sometimes, when I have to miss a dose for travel reasons or whatever, and I start it again, I'm usually down for 12-24 hours but I'm find after that and I resume norman injection routien. Adhearance is very important, if you can stick it through the side-effects it's worth it. :) Keep the chin up!

Iain Dughlais said...

*find = fine
*norman = normal

Rebif doesn't do good things for typing skills apparently.


Jaime said...

Aparently Avonex doesn't do much for the reading skills, lol. I did not even notice! Thanks for the advice. I will be resuming the Avonex on Friday once things calm down a bit, it has been difficult trying to figure out where to 'squeeze' it in lately, but I do understand why the meds are important. I hope you are well. Take care. Jaime

amanda said...

Jaime I am far far from and MS expert but I do know that you ahe read my blog and see the price that I am paying now for skipping way too many of my injection meds.

I wish you would try I am now doing my Avonex the correct way as I know the more that I do for me the better mother to my 4 beautiful children I will be...

Another suggestion that I mention to lots about Avonex is try getting the Avonex powder from. You mix it yourself..which is easy..and from what I hear the side effects are much less and for some non-existant..that is what I do have never taken any pre-filled syringes meds but Rebif as they were not willing to offer me the original powder form....just a thought to look into!!!

Jaime said...


Thanks for the suggestion! I have an appointment with my neurologist on Thursday, so I will talk to her about the powder form of Avonex. I did not even know that was an option. I have only been on Avonex for a few months and they did not even give me an option, they just sent me the pre-filled meds. Maybe that will help with some of the side effects.

Part of the problem I have is the interactions due to my other health problems, I think this is in part why I react as bad as I do, and why my doctors are keeping such close watch on me. I do understand just how important it is to be on the meds. This past couple of weeks it has just been difficult to find a way to make time to take the injection as I have had SO many things I needed to get done.

It has been more of a problem of when to do it vs. wanting to do it. Then it became, this not taking it is kind of nice because I feel good on the weekend for once. I do understand that for now I should continue to take the Avonex, it would just be nice if I could take it and feel good. Maybe one day!

I hope that you are doing well. I have not seen you on in a while. My thoughts have been with you as I know you have been going through some things yourself. Please take care of yourself and thanks again for the advice and support. If there is anything I can do for you, please let me know.


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I was diagnosed with MS in 2004, have been through all of the FDA approved treatments I qualify for and now am participating in the HALT MS Study. This is my life with MS (among other things).

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