My Online Journal

Why am I still aching???? I have my Avonex injections on Friday nights, and usually I feel pretty tired and achy on Saturdays, especially if I overdo it. But I'm usually back to normal on Sundays. Once I ached for an entire week, but that was at the start of Avonex therapy. Hopefully this won't last a whole week!!! It's still better than an exacerbation though.

April 8, 1998

Well, my next three months supply of Avonex arrived in the mail yesterday! Doesn't seem like I've been on it for three months already - guess it's not as bad as I thought it would be. When I saw how long that needle was and the nurse told my husband and I that it had to go all the way in (!!!!) I didn't know if we could do it. But, you know, it doesn't really feel like it's going in that far, thank goodness!

My husband gives me the injection every week. I tried to give it, but I just couldn't. My hand kept yo-yo'ing between the air and my leg, I even pricked myself once with the needle, but I was just not able to actually do it - what a chicken! Maybe I'll try again sometime.

We rotate between the outside of my legs and my arms. Injecting the top of my leg was most painful (won't do that again!). My sister has also given me the shot when my husband was out of town. She did great too! I should take a moment to thank both of them - Thanks guys! (That's kinda crazy isn't it? thanking someone for sticking you with a sharp object?!?!?) Oh, well, somebody's gotta do it, and I'm just glad it's not me. So, the point of all this rambling is to say that I've decided that having the Avonex injection every week is really not so bad. I can do this (with a little help).

April 15, 1998

One year ago, I became a mother for the first time. It has definitely changed my life in many ways. He is the most beautiful child (of course, I would think that) and I am so glad that we decided to take a chance and have children. We were very worried about the effect of the pregnancy on the course of my MS. Thankfully, I did not experience any problems while pregnant, but I did have an exacerbation 7 months after the delivery. I am back to 'normal' now, and my days are filled with chasing my little one around!

We would really like to have more children, maybe a total of three, but wonder if we should stop 'while we are ahead'. I worry that my MS could get much worse and that I might not be able to take care of myself, much less my children. Should I chance having more children and possibly not being able to care for them? If I knew that my MS would remain the same for the next ten years, I would definitely have more children. But that's the problem with MS -- you don't even get the doctor's prognosis of the course of your disease, because he just doesn't know. So....it's a gamble, and I don't know whether to roll the dice one more time or to just walk away from the tables now, and be happy with the wonderful family I already have.....

April 18, 1998

Well, I have changed the music on this page. It was "Comfortably Numb" which seemed appropriate for an MS page, but I decided it sounded kind of dreary, like a funeral dirge! So, now it's Orinoco Flow (Enya). A little bit cheerier I think. I have really been enjoying the feedback from visitors to my site, through email/guestbook. It's nice to hear from others out there in similar situations. So, if you're reading this, sign the guestbook/send email!!!

April 23, 1998

I joined a gym yesterday!!! Lately, I have been feeling kind of weak sometimes, and also achy from the Avonex. So, I'm hoping that exercising my muscles will help. Last night I actually went to a Yoga class - never been before. I really enjoyed it. It seems like Yoga will be good for my flexibility, and stretching all those muscles regularly seems like a good idea. Anybody out there ever tried Yoga and does it help? Either way, I enjoyed it, so I'll go back. It's just a once-a-week class. Wish it was more often. Guess I'll have to remember what we do in class and work on it at home. Today I'm going to go to an aerobics class - probably won't last the full hour! I'm sooooo out of shape. Oh, well, have to start somewhere!

April 30, 1998

I don't have anything new to tell you. I'm doing pretty well other than some annoying headaches. It always hurts on the left side, the same side I had the optic neuritis. I wonder if it's somehow related to that - ??? - I've tried less caffeine, more caffeine, eating better, etc. to no avail. Midrin doesn't do much either. DR says I may be having migraines. Who knows??? Anyway, other than that, I'm doing great. I've been trying to exercise more. Missed yoga last night due to a killer headache, though. It probably would have helped if I had gone, actually. I've been to a few aerobics classes - I was pretty sore afterwards! Oh, well, I guess it will just take time. Sorry there's nothing interesting to tell, but, hey, that's good news!!!

May 5, 1998

A few days ago, someone wrote in my guestbook - 'hope the Avonex does something positive for you - I couldn't poison myself seeking relief'. When I first read that, it really made me mad for some reason. This guy was saying I was poisoning myself by using the Avonex. It's my business if I want to use the Avonex. Then, I thought, well, he's entitled to his opinion too. I guess I'm hoping that by using the Avonex, that it will keep me from having as many exacerbations, that it will keep plaques from forming in my brain at the rate they would without it. So, I thought, it's worth a few days of achiness each week if this drug keeps me from forming the plaque that makes me lose bladder function or become paralyzed, etc. But, with the Avonex, it's hard to tell if it's helping. If you have high blood pressure and you take medication for that, and you can measure that your blood pressure is lower, then you know right away that the drug is working for you. With Avonex, it's more of a long-term thing. Maybe I won't have an exacerbation for the next 3 years. Then, the DR will say 'the Avonex must be working'. But, before my last exacerbation, I didn't have one for 3 1/2 years! So, maybe I wouldn't have had an exacerbation anyway! It's hard to say. Lately, I've been noticing that I feel weak sometimes, and I can't remember if I ever felt this way before starting the Avonex. Maybe it's from the MS, maybe it's from the Avonex. Hard to say now. Maybe I should not take my Avonex for a couple of weeks and see if it still happens. Then, I'd probably feel really bad when I started the Avonex again! I guess I've decided to take the Avonex, so I'll stick with it for a while and see what happens. I'm hoping they'll come out with better drugs soon, ones that don't have to be injected preferably! And a CURE!!! Any thoughts on this subject??? Please let me know.

May 14, 1998

Just call me GRACE!!! Ms. Coordination I am not! I went to step aerobics class yesterday and took a sail off the step onto the mat below! OUCH!! Well, I was pretty embarrassed, to say the least. I had lost my balance and twisted my ankle and fell hard onto the mat - thank goodness it was rubbery! To my dismay, the class pretty much came to a halt. Don't like that kind of attention, no thanks. And, for a brief second, I wanted to say, I'm not really this clumsy, I have MS - it's the MS. But, you know, I guess I really AM that clumsy. The MS is a part of who I am. I don't want to draw attention to it (not many people know I even have MS) and besides, I'm sure other people without MS fall too, they just never seem to be in my class! Anyway, it's just interesting that I want to blame the MS for something that could've just happened anyway (it should be good for something, shouldn't it!). But, I think the workouts will be good for me. Afterwards, I really feel better. Today though, I am sore everywhere! But in the long run, I think being more in shape will have to be better for me, to be more limber, thinner, etc. I've been doing yoga too. I enjoy it, it's relaxing. Anybody else out there doing yoga?

May 27, 1998

Lately the Avonex injections have not been bothering me at all!!! This is cause for celebration! After the past two injections, I have had no problems. Hopefully it will be this way from now on. I'm still going to aerobics and yoga and enjoying both. My right leg is a little numb - 'barely numb' - I call it. It isn't causing any problems, just feels weird when I shave it. I can live with that. Other than that, not much to tell, so I won't bore you with anymore chatter today.

June 7, 1998

Well, still no problems from the Avonex. I've been taking 800mg of ibuprofen before the injection, at bedtime, and again in the morning. Seems to be working pretty good! Today, my husband and I spread mulch in our yard for several hours. Thankfully, it was a cooler day-about 75 degrees. Now I feel pretty wiped out though, lots of tingles in my arms and legs, but nothing serious. It was nice to get out in the yard and DO something!

June 22, 1998

Back from a weeks vacation at the beach with my husband's family. We had a great time. MS didn't bother me much, just some tingling and weakness in my legs. I took my Avonex with me. The manufacturer says it can go without refrigeration for 30 days, but who knows how long it went without refrigeration during the mail-order process. I put it in the downstairs refrigerator that wasn't being used. I hoped no one would find it, since they don't know about the MS. My husband wanted to tell them. At this point, I don't think it matters much to me if they know, but it's kind of hard to bring the subject up. 'Nice weather we've been having. I have multiple sclerosis. Could you please hand me the sunblock?' I guess I still don't see a lot of reason to bring it up until it really becomes a problem. And, thankfully, it's not a big problem now.

July 24, 1998

It's been awhile since I've updated this journal. Nothing new to tell - I'm doing pretty good! My only complaint is the Avonex injections. For some reason, I have really started to dread them. I really tense up when my husband is trying to give the injection, which only makes it worse. At first, the injections were not so painful, but lately each one hurts. Tonight we used the top of my leg (which we usually don't use). It wasn't as bad as last week. I don't know if his technique has changed, or if I'm tensing up, or if it's something about the medication???? Any thoughts?

July 29, 1998

Yesterday, my right eye (the one that has not had optic neuritis) seemed to be 'off'. For about four hours, it was as if I was looking through a dirty window. Then it just went away. I don't know if this was related to the MS, or just a fluke thing. Every time I have some strange new thing happen to me, I try to attribute it to MS. I guess that's only normal. At least I realize that I'm doing it!

August 12, 1998

I just got back from a great vacation! I went on a cruise to the Caribbean. It was more fun than I dreamed it would be. It was also a big expense, but there's always that little voice inside my head telling me that I might not be physically able to go next year, or the next. So, I'm glad I went. It was a ten-day trip. Three days in San Juan and a seven-day cruise. We visited St. Thomas, St. Maarten, Martinique, Dominica, and Barbados. I enjoyed all of the islands, with Martinique being my least favorite. Everything was pretty expensive there, and the people were not as friendly as those on the other islands. Dominica was pretty, but I probably wouldn't go back there, except maybe to scuba dive. There just wasn't as much to do on that island. The ship, Carnival's Fascination, was great, the islands were interesting, and there was lots of eating and shopping! I also went scuba diving, snorkeling, kayaking, and on a Land Rover Safari through Barbados. It was pretty exhausting - I took a few afternoon naps, and I didn't stay awake for all the midnight buffets. My tingling was also there to keep me company anytime I overexerted myself. No other MS problems went along for the trip, thank goodness!

August 19, 1998

I am doing GREAT!!! I have been going to the gym most every day for the past 2 weeks and I am really feeling good! I guess exercise does that for you, huh? It's hard to get motivated to go to the gym, but afterwards I'm always glad I did. I'm not even experiencing the tingling when I get hot, so I'm thankful for that. Nothing has tingled, gone numb, or lost function, but I have lost some weight! I wish the gym had water aerobics, but unfortunately, there's no pool!

August 29. 1998

I've had a stomach virus for a couple of days, so no going to the gym for me. In fact, when I simply walk up the steps, my lower body starts tingling. Hope this isn't the start of something. I'm just really weak from not eating, I guess. Hopefully tomorrow, all will be back to normal. Of course, tonight is shot night.

September 4, 1998

I start a job next week! I'm excited about it now, I hope I like it. I worry about having an exacerbation and having to call in, I worry about putting my child in daycare. You know, I didn't even have to answer all of those health questions that expose the MS - maybe that's still to come. Or, maybe, since I'm part-time - I won't have to have the health exam. It wasn't mentioned, and I didn't bring it up! Oh well, wish me luck!

September 7, 1998

Well, the new job starts in two days. I'm getting a little nervous. It's been a while since I have worked more than just a day each month, so this will be a big change for me. My child did okay during our 'trial run' at the daycare center Friday. I'm taking him tomorrow for a few hours too. Hopefully, this will make it easier for both of us Wednesday when he has to be there all day. I have had laryngitis for the past three days! I have never had that before, it was really strange not being able to speak above a whisper. Today, I went back to the gym ( after a five-day absence ) and now I'm tingling again. I guess it's the combination of being sick and getting hot/tired. I'm not worried about it - it usually goes away, but this would be a terrible time to have an exacerbation wouldn't it? Guess I shouldn't overdo it for the next few days. Well, enough rambling for now - I'm sure you're pretty bored!

September 14, 1998

Dizzy, dizzy, dizzy!!! I have been dizzy for two days now! I don't know if this has anything to do with MS or not, but it sure is irritating. I'm even dizzy while lying in the bed! Let me know if you have experienced this....??????

October 7, 1998

The new job is going pretty good, but I'm tired at night. Maybe this is what MS fatigue feels like....maybe I am just not used to this! I have been going to bed at 8:30 - that is really not like me, I'm usually a night owl. I guess standing all day takes its toll on you, whether you have MS or not. Hopefully I'll adapt in time. It is nice to feel productive again. My self-esteem had dropped to an all-time low. It has been rising again lately. I don't know why stay-at-home moms sometimes lose their self-esteem. I guess in today's world, how we view ourself is tightly entwined with our job. I would probably have low self-esteem if I were unable to work because of disability - I don't know - what do you think? Why is it that I feel the need to be gainfully employed to see myself as a 'valued member of society'?

October 24, 1998

A new medication for me starting this week - amitriptyline for my headaches. I went to the neurologist for my regular checkup, and mentioned that I had been having lots of migraines. He prescribed a low dose of amitriptyline, a tricyclic antidepressant, which is often used for various pain syndromes, including migraine headache. He wanted to put me on Depakote, but I said 'no'. I know people with bad experiences on Depakote - no thank you. So far, the amitriptyline is working great - no headaches, and it helps me sleep good too. But, some days I feel a little disoriented early in the morning. Guess that means I need to sleep later!

December 9, 1998

No more amitriptyline; I got to the point where I felt like I was just taking too much 'stuff'. I almost stopped taking the Avonex too, I think it's depressing me a little bit. But, I decided to keep on taking it for now. I see my neurologist next week. He wants me to switch to Copaxone if the 'altered mood' isn't better. I don't really want to have to stick myself everyday. I'd definitely have to do it myself sometimes, and I'm pretty chicken! I think I'm having a 'mini-exacbation'. My hands feel vaguely numb, and my typing is not up to its usual par. I'm having some minor bladder problems too - at least I hope they're minor (won't bore you with this). Anyway, enough rambling. You know, it was just Thanksgiving, and I'm truly thankful for my health, the ability to walk, to enjoy my son and husband, to be able to work, to see the beautiful weather we're having, and the list goes on endlessly......

May 31,1999

Gosh, it's been a long time since I've made a journal entry - I guess that's good, it means there's not been a lot of ms-related stuff going on with me! I have just moved back to my hometown and it is nice to be back! If anything does happen, I have lots of family around to help.

I have been going through a fun time with my insurance company. I am in a PPO (preferred provider organization) and it seems that there are NO preferred providers near my new home. Where I lived before, almost all the doctors and hospitals were on my preferred provider list. Not so, here. I called the insurance company to ask them what physicians I could see, and they were almost no help. I was told that I would have to just call up a physician's office and ask them if they were in the network. That didn't work either, because when I called the offices, I would be told that they accepted my type of insurance, but then when I called the insurance company to confirm that the physican was okay to see - I would be told they were 'an Aetna participating physician, but not participating in my particular network'. That was very frustrating. I finally solved my problem using the internet. I was able to go to Aetna's homepage and search for physicians participating in my network using zip codes. Finally, I was able to find new physicians - they are about an hour from my home. Not quite as convenient as before, but I'm sure there are people who drive farther.

So, I have seen a neurologist recently, and she ordered blood work and a brain and spinal MRI. More fun with the insurance companies to find a participating lab and MRI center. I shouldn't complain - as long as I go to a 'participating provider', my insurance pays all but $10 for office visits and 100% of the MRI and blood work. It's just frustrating to get everything hammered out beforehand. I think I have everything straight now. I wanted to make sure I was established with a neurologist nearby in case I have an exacerbation.

Good news from the MRI! The neurologist says that my brain MRI looks fairly mild, and there were no lesions seen in the neck region. I was surprised to hear this, since I have gone numb from the neck down before, but I've felt pretty positive about my MS since hearing this - almost like a new person. My new neurologist is very open to discussing my situation, more so than my last neurologist. She has actually called me at home to tell me the results of my bloodwork and my MRI. My previous neurologists would have NEVER done that! I'm on no meds now but Avonex, and an occasion Maxalt MLT for migraine. The neurologist was considering changing me to Betaseron, depending on the MRI; but after seeing the MRI report, she thinks the Avonex is doing its job! I'm glad - I do NOT want to have a shot any more often than I have to!

August 1, 1999

I'm trying to remember to update this journal. Luckily, I don't have too much to report, which is great for me! I'm sure it makes for boring reading though! A few weeks ago I had a severe injection site reaction to my Avonex. It hurt during the injection and for about 45 minutes afterward. Then, it remained tender/sore for about a week and a half. At one point, it actually seemed to be getting worse. It has since completely resolved. Thanks to everyone who emailed with their personal experiences - that helps!

September 30, 1999

Well, I've been having a bout of optic neuritis (ON) for about a month now. It has not been as severe as last time, and I opted not to take IV steroids this time, since they are thought to only speed the recovery time, not increase the actual amount of vision recovered. Unfortunately, my 'normal' vision has still not come back. Everything is just faded out when seen through my left eye. The first attack of ON I had left me really disoriented until the vision returned. Luckily, this time the visual changes were not so drastic. Maybe this is due to the interferon - Avonex. I hope it's doing something positive! I am considering changing to Betaseron - my neurologist seems to think that it might be slightly better, due to the higher overall dose. Part of me says 'why mess with a good thing - Avonex is once a week, my husband can give me the shot, and I haven't had any terrible exacerbations since starting' while the other part of me says 'but you did have an exacerbation and if the Betaseron might be better, then switch, and besides, it's a subcutaneous injection, which I can give myself'. So, I'm not sure which is going to win out. I wish they would do a study - Betaseron vs. Avonex vs. Copaxone. But, I know they will never do that, because there would only be one winner, and everyone would want to switch to that drug. I'm still thinking about it......

January 7, 2000

Well, we've made it to a new millenium! I haven't made a journal entry in a while. All is well here, as I hope it is with you. My left eye is still a little bit blurry, but I can live with it. My body is now covered with red blotches. I have switched from Avonex to Betaseron. I am able to give these injections myself. I was never, not once, able to give myself the intramuscular Avonex injections. The subcutaneous injections are not quite as bad. Also, personally, I am glad to be able to give the shots myself every now and then. Actually, I give most of them; my husband give the ones in my arm and butt. Can't quite reach there! We just got back from New Orleans. We were there from January 1 thru January 6. It was quite an experience! We went to watch VA Tech play in the National Championship - unfortunately, they lost; but - I still had a GREAT time. I wasn't there for the game anyway - I was there for the trip! We ate at one of Emeril's restaurants, Delmonico. He was there that night - he autographed my tasting menu and a cookbook. Bourbon Street was wild! While we were there we had lots of good Cajun cookin' and I bought several boxes of pralines. I LOVE them! We stayed in a friend's condo, which is in a renovated warehouse - really neat! We were able to walk to everything - the riverfront, Bourbon Street, the French Market, the Superdome, the restaurants.....Well, I guess you can see that I am doing really well. I didn't have any problems during the trip, just a little bit of leg weakness which didn't present a major problem. I'll try to update this a little more often!

March 21, 2000

Well, the latest thing with me is that my white blood cells, hemoglobin, and hematocrit are low - lower than the normal range. Last time they were checked, about 5 months ago, they were in the high normal range. My neurologist has rechecked them once already, and I have to have blood drawn again next week. She thinks the Betaseron is dropping my blood counts. If it continues, I will have to stop the medication. I don't want to do that! If this stuff is really helping, I surely don't want to have to stop using it. AND - I don't want to switch to Copaxone - that's a daily Subcutaneous injection, and I don't think the studies look as promising with Copaxone. At least, I don't hear as much about it.... Wish me luck!

August 30, 2000

I've been doing really well lately, and staying so busy that I haven't had time to update this site much. I've lost 35 pounds, walk/run about 3 miles most days, work 2-3 days each week, and work at raising a 3-year old. I am still taking Betaseron injections every other day. I don't have many problems with it. The injections in my left leg seem to cause more skin reactions than those in other sites. I'm not very good at jabbing that needle into my skin - I tend to yo-yo back and forth for about a minute, then end up slowly forcing the needle through my flesh. Yeah, I know it would be less painful if I were to use a more abrupt motion!

July 28, 2001

Still doing great! Having no problems at present. I am staying very busy with my 4 year old son and husband. Everything has been going really well. I have a tendency to be slack in updating this site when all is well. Sometimes I forget I have MS. I hope I am always able to do this.

February 6, 2002

No problems with the MS! In fact, I am pregnant - due May 3. Everything is going well, I've not had any MS symptoms except some hand tingling ( which probably wasn't even related to the MS! ) I've been told that the baby is a boy, so this makes 2 for me! I am outnumbered at my house - even the cat is a boy! Not sure what to do about breastfeeding since it would be beneficial to get back on the Betaseron right after the delivery. I have read a few articles about breastfeeding possibly offering some protection from the MS, although not as much as being pregnant. Anyway, for now I am just hanging out, waiting for my baby!

July 10, 2002

Well, I had a beautiful baby boy in April. Everything went well. We are doing great right now. I know this is the time when I am at an increased risk for exacerbation, so I have this in the back of my mind. ( Well, it's probably not that far back! ) I am breastfeeding him and hoping that this is somewhat protective against an exacerbation - I have read conflicting views regarding this. So - I am torn.... I don't want to stop breastfeeding but I don't want to have an exacerbation or have new lesions form during this time. For now, I am continuing with the breastfeeding.

July 4, 2003

I continued nursing until my baby was about 13 months old. I stopped then because I had a mild exacerbation. I started going numb from the neck down, especially my legs. I was fatigued and felt very 'buzzy' all the time. By this I mean that it was more than tingling, kind of a slight vibrating feeling. It made sleeping hard some nights. I decided it was probably best to wean my baby and start back on the Betaseron. I saw my neurologist and started back on the Betaseron in May. The injections are going well, I use the auto-injector and they are mostly painless and easy to give. I have some achiness the next day after the injection. The neurologist ordered an MRI, which did not show any new lesions thankfully. I am glad that I made the decision to delay restarting Betaseron and to breastfeed my child for his first year.

July 9, 2004

I'm doing well, no more exacerbations - just minor tingling/numbness that doesn't last long, thank goodness! My boys are 7 and 2 now, so the oldest would be old enough to notice if I had a serious problem. I haven't really discussed MS with him. He used to see me give my injections when he was much younger - he probably doesn't remember. I don't want him to worry unnecessarily, so I keep the MS to myself. Luckily, that's usually pretty easy to do. If my MS progresses, then I'll explain it to him.

February 11, 2006

It's been a while since I've updated this. I've been doing great, having no problems. I had an MRI in December which showed no new lesions since my last MRI 2 years ago. That's great news! I'm still taking the Betaseron, with lovely little temporary bruise-like marks from that....

April 22, 2008

Where does the time go? Two years have gone by! The last 1&1/2 has been quite busy - in that my MS has been working overtime. August of 2006, the soles of my feel were numb, all the way up to my waist. I didn't even go to the neurologist. It was more irritating than anything. I just had to make sure that I walked carefully. Walking barefooted felt very strange. This lasted about six weeks. April 2007, my legs were numb, I had a tight band-like feeling around my chest, walking was difficult. The palms of my hands felt scalded. I had three days of IV steroids. I slowly improved, very slowly. My hands are still not back to normal - for example - I can't tell if clothes that have been run in the dryer are fully dry or not. My hands just don't feel right. And they just don't "feel" right. I was still not over this exacerbation when, in June, 2007, I went numb from my chest down, and lost most of the use of my hands. It took me forever just to get dressed. I couldn't write my name, hold silverware properly, lift anything. I pretty much couldn't do anything. I was unable to fix a meal for my kids, drive, you get the idea. Three more days of IV steroids. These symptoms lasted about 3 weeks, then subsided. From August to December, I had terrible flu-like aching all the time. Nothing helped. Imagine feeling like you had the flu for four months! I also had tingling/buzzing along with this some days. Thankfully, these are not bothering me on a daily basis now. I am getting some days relief at a time, but I cannot figure out what makes the difference. I guess MS is just a crazy disease. I am ready to go back to my old self, the one with no muscle aches or tingling or buzzing or numbness, etc.

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neverbetter@hotmail.com

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