Saturday, December 03, 2005
So, I'm on the fourth one, which I hope helps, sans headaches.
My work has also moved twice since the day before Thanksgiving, so that's been crazy, and now we have the holidays.
I can't believe it's already December 3! There's no time, no time!!! UGH!!
I saw my new Neurologist and she's wonderful!! I'm very optimistic and I finally have a true diagnosis. "Classic relapsing/remitting." She also said that I'm doing great and that Copaxone is obviously a great fit for me!!
I also told her how I feel guilty that I don't take the time to research and she looked at me quizzically and said, "Why would you need to research? That's my job. Your job is to take care of you and your family." Wow!! She also has a great staff of nurses that I can call pretty much anytime! That is wonderful!! So I'm very happy that I switched docs.
Another thing she told me was that I need to get 8 hours of sleep a night and a one hour nap during the day. HA!! That's funny!! Instead the anti-depressants have been waking me up at 5am. Ick! And my Dad said, "You just keep going and going." I do have more energy, but I feel tired. Weird. We'll see how this works out.
I hope you're all well. Happy Holidays!
Saturday, November 05, 2005
Well, I told him about how I started out the first half of the year losing my job, then job hunting, then getting a new job, which has been so much stress all on it's own. I told him about me having a breakdown that my step-kids heard and that my daughter heard and that I was worried about all of that. He heard all of my worries about money, about how long I can work, etc. I told him how even though I should feel pretty proud of the fact that I've been on these injections for nearly a year, I don't feel proud I just feel bitter and angry that I have to take them. I also told him that I'm nearing my 3 year anniversary of my diagnosis and it's really affecting more than it ever had before. I just never wanted to think about having MS.
Well he has been the first person who actually validated everything that I've been feeling.
He said that depression is really very normal. That just the job situation alone can cause depression, pile on that the stress of a blended family, raising kids and every day normal money issues and depression is more than understandable. But then he said something that I was like, "Oh my gosh, he so gets this!" He said when you have MS, MS alone can be something that causes stress and depression. He said the main thing about MS is the not knowing when I can have a relapse. He said, "You're doing fine, everything's good but you just don't know how long that will last." Then he compared it to the story of Damocles and the sword and how he had the sword hanging over his head by just one horse hair, never knowing when the sword would fall and how bad it would hurt him when it did. And that's just like MS. When will the sword fall and how bad will it be?
After he told me that I was actually pretty hopeful. He said the anti-depressant will help me, that I will feel better. I've only been on it for six days now, but I'm hoping this does the trick. Of course I have to get over the nausea and the headaches from it first. Again, if it's not one thing it's another! :-)
Oh, and I just have to share. Before I saw the doc, when his nurse called me from the waiting room, I stood up to follow her and she never even turned around to see if I was following her. Then she lead me to the scale (digital - hate 'em) and when I got to it I said, "Should I take my shoes off?" She said, "You don't have too." So I didn't and stepped on. As soon as the number came up I turned to her and said, "My shoes weigh 50 pounds." No reaction from her whatsoever, no smile, nothing. Good thing I never went into Stand Up!
One more thing, the word verification is working!! Whew!!
And I hope you all are doing well. Thanks for reading.
Saturday, October 29, 2005
I think I'm going to try. UGH!! Some day I'll make this decision.
I think I'm in a slightly better mood right now. Just because I'm relaxed and not feeling rushed and not trying to think too much about anything right now.
Also, I skipped my shot last night, not on purpose, but because I forgot to bring my "stuff" with me to my folks house. So I'll be back on it tonight. But hey, a day off once in a blue moon, maybe it was what I needed.
Thanks to everyone who wrote to me about my last post! My name is Pamela and I have MS.
And to SinnerSaint, you're darn right. This disease is going down!!! I loved that.
Okay, now, here's a quick question about blogging. How in the heck is my blog getting SPAMMED?!?!?! UGH!!! I delete them, but how do these people find me? LOL!
Ah well, again, if it's not one thing it's another.
Now, I have to go back to hubby and me time, but I read an excerpt of Teri Garr's new book in People Magazine. It was good. I can't believe how much I'm reading about MS lately!! People are talking about this more and that's a good thing. So I'm going to get her book too to read, and I am going to read The Breakdown Lane. I think it might even help encourage me to write more.
Take care all!! Till later.
Sunday, October 23, 2005
I think that for the past, almost three years, I just tried to avoid the subject. Just thinking about it when having major symptoms, having Solumedrol treatments or now every night I take a shot.
I think about it when I plan and organize my team for the MS Walk, but really, if I have a symptom I don't talk about it. I'm starting to feel that that's been my biggest mistake.
I also realized today that I haven't been telling my husband. He didn't hear until today how incredibly depressed I've been. I think he's just been feeling my anger. Poor man!
Is anyone else angry? Stupid question?
Regarding that book, I can't get past the first chapter. I'm afraid to keep reading. I started it and thought I should go back and finish 1776. Or I should write everything down myself.
In reading in other blogs I'm also realizing a lot of us either blame MS for all symptoms we have for anything or try to attribute some of our symptoms to something else.
Do you realize that we get that from our family and friends. Everyone tries to reason away these crazy symptoms! Specially for those of us with invisible symptoms. Just because someone else can't see my cold spot in the middle of my thigh, doesn't mean I don't feel it.
And I really think people are bothered if I talk about it, like I'm drawing attention to it. So I try not to talk about it. But you know what? It's part of me! I can't reason it away or pretend I'm not having a hard time with it or act like I'm fine. But I'm not fine. I have these weird crazy things going on in my body. Yes, I can walk just fine, and I'm grateful for that. But I still have crazy wacko things happen that I can't explain. The things that make me think, oh I'm just tired or I picked up my son wrong, or I must have slept on my arm and that's why I wake up every day with it numb.
But it's because I have MS. Now, I got that. I just hate having to pretend that I don't. And even telling myself that I'll deal with it, when it comes up.
Well, it comes up every night at shot time. It comes up lately, every day, throughout the day because of this depression.
I hate living every day wondering when I'll have another major relapse. And not really knowing if I'm having a relapse because of all the other weird twinges and cold spots and numb spots.
I cannot wait to see that new neuro in November.
But in the mean time, I'm finally mad. I keep thinking, that I don't have to make this part of my life. But it is.
I got something from my old company about retirement. My Dad and I sat down to see how much money I could get if I made them role it over in a monthly payment for me. But my Dad asked, "When are you planning on retiring? Can you wait till you're 70." And I said, "Dad, I don't even know if I'll be able to walk at 50, so I don't know." I don't know. That is the hardest part. I wish that someone could say, "okay, this is how long until you'll need assistance." But no one can say.
I know, I'm having a terrible pitty party. I know this blog does no one any good. Maybe that's why I feel so selfish. I don't want it to be all about me, and it truly isn't. My MS is about me and my family and my friends, at the least the ones who aren't bothered if I talk about it. Bitter much?
I'm very lucky to have such a wonderful husband. My parents are wonderful. But just like when I first found out. I had to make them know that I was okay. Well now I think I need to talk. And be sad when I'm sad, and be okay with that. And not feel guilty about letting this bother me.
If someone was stepping on my foot or sticking a needle in my thigh to make me have these feelings, my family and friends would be mad. They would talk about it. They'd say, "Hey, why is that jerk sticking a needle in your thigh?" And I'm sure they'd tell him to stop.
But this is harder for them to talk about, and thus harder for me to talk about with them. It's just harder when you can't see the jerk, I guess.
Please don't get my wrong. I have MS and in not wanting it to be the main thing in my life, I've avoided it. But it's part of me and I have it and I've got to talk about it. UGH!!
Wednesday, October 12, 2005
For the depression I decided to try exercise, again. Funny thing about that is... I'm too tired to do it. I have been too tired the past two days. I keep thinking that laying down and crying would be easier than the exercise. It works for my kids! When they're upset they kick and scream and it works for them. Why can't I?
Because I need to show a brave face. That's why I hate this depression. I don't feel brave right now. I also feel horrible that I can't make it funny right now. I used to say, there is humor to my story of MS, but not right now there isn't. I wouldn't mind having that back right now.
I need a vacation. Maybe it's the culmination of what's gone on in the past several months. I mean, I was laid off on April 1 from a company I worked for nearly 10 years (11 if you count temp time), then I got a new job, and that's been an adjustment, believe me! Then my kids, my husband's surgery, and his icky ex wife. I guess if you look at all of that, there's some hurdles in there. But I've survived so far and I'm sure I will survive this. Gloria Gaynor, sing it for me baby!
I am looking forward still though. I've got that new neurologist that I see in November. I just CANNOT wait! I mean, maybe she'll explain the more frequent headaches, the pulled muscles. Is that a symptom? I mean I've been getting them an awful lot lately. Anyway, I have things to look forward to and the fall is my most favorite time of year. My daughter loves it and I'm looking forward to the holidays too. It will be better. But man, I guess I should get on something before we get to the winter blues! UGH!! To quote Rosanna Rosana Dana, "If it's not one thing it's another!"
When I was pregnant with my son I had gestational diabetes and had to stick my fingers several times a day. I remember, the longer I did it, the harder it got.
I'm thinking that's what's happening with these shots.
My Autoject was even messing me up. Sometimes I'd have the thing on my arm for 20 seconds and the red area still didn't show up in the window. So my Autoject was failing me. However, the people over at Shared Solutions are excellent and not only sent me two new ones, one is for backup, but they also sent me an envelop to send the "bad" one back in. So they can check it out and make sure they don't have this trouble again. That was great!
Now if I could get past the part where my brain actually tells my thumb to press the button... faster. Instead of me holding for a good minute and finally have to regroup because I've gotten myself into a tizzy over not pressing the stupid button. But it's nothing a glass of wine can't take care of. Well, sometimes. I try to be brave and skip the wine and many times I succeed!
Also, I have to say, Tucks pads are the way to go. Slap one on after the shot and it's pretty good at taking the sting away. Plus, having something else on your mind or something else to do helps too. I mean, hey, I'm still here, right? The shots aren't killing me.
Even in this "down" time, I'm still doing pretty well.
So I should LOVE these shots! They just kind of suck.
Sunday, October 02, 2005
So much has hit all at once that I guess it was inevitable.
Personally, my 5 year old daughter has become more and more of a challenge, very strong-willed but to the point of tantrums constantly. I think, God, why? I'm so tired I can't deal with this!
Then even my 15 month old son throws tantrums. But his are funny, for now. I just hope his continue to stop quickly. All you have to do is chuckle and then he'll stop and chuckle too.
My husband's ex has made our life miserable, but at least his kids respect us more than they do their mother. That's always a plus, especially when I'm already too tired to deal.
Work is so stressful and my son has been sick constantly! So I've had to work from home, which has caused me to work longer hours. And my boss isn't happy about it. I've only been there since June and I've already used up most of my vacation/sick. I just keep pushing through the fatigue. And ignoring all the weird things going on.
And then I cry. I cry because it seems like there is NO TIME to do anything. Like something is happening and I can't control it. Then I have no time with my daughter, we end up battling instead.
And the shots! I'm nearing a year of these lovely things and suddenly it's harder for me to push the button on the Autoject now then it was when I started. I don't know. Maybe that part is all in my head that it's scaring me now then before.
I'm also anxious to see this new neurologist. I can't wait and I still have till November 22 for my appointment. Which I made in April. I hope she's that good, as everyone tells me.
I am disappointed in myself! I just can't believe I'm actually letting this get to me and I swore it wouldn't. I told myself not reading too much about MS would help me to move away from it. Maybe that wasn't a good choice.
My daughter actually told me yesterday that she was afraid she'd have to take shots everyday when she gets older, like I do. I don't know how to make her feel safe. I just know I don't want her to get MS. I worry when my son gets too hot that he's going to have a relapse. He's only 15 months and doesn't have MS, why do I think that way. I try to keep my daughter from getting over heated. I get paranoid when she says, "My heart is racing." Not that racing heart is a symptom of MS, but that she might be sick with something else. Oh my goodness, I can't even explain that feeling of hopelessness, not knowing how long I can be there for my kids. See, that's the depression. All this doom and gloom.
I'm sorry, this isn't the most positive blog. But hey, I'm still hanging in there.
Take care, all. Keep smiling. Don't let it get you. I know I'll come out of this too. Just a culmination of so much at the same time, I'm sure.
Monday, September 05, 2005
When I was at the hospital waiting for Bill during his surgery I met a woman who I thought was really nice. She's from Southern Missouri and she's older. I told her about my kids, about my MS (don't ask why I tell people, I never thought I would before, but I do now), she told me about her work and her husband and their farm.
After our husbands went in for surgery she and I went to the cafeteria and ate and talked together.
Then we went back up to the waiting room and for the brief time we were there before going back to see our husbands she said this, "Looks like God is trying to tell them something."
Huh? What could that possibly mean? Why do idiots have to speak after a horrible tragedy?!?!
I didn't even know what to say.
I just sat there and looked around the waiting room to see if anyone heard the same idiotic statement I just heard and then she told me how her ex husband had gone there and it was just a bad place.
Okay, so I have only been to New Orleans once, when I was a Junior in High School and I loved it. I went with my folks who have been there so many times because they loved it.
I never experienced "the bad" which, excuse me, happens in every city in America.
But why would anyone ever deserve that? Why would God be so angry he'd kill thousands of people? What kind of dumb statement is that?!?!? It just makes no sense to me. It's just plain stupid!
I then said, "What about the children and the elderly?" and she couldn't say a word. Whatever!
There are children and elderly who died this week. There are women who were raped, people who were drowned. What she should have said is, "Why didn't anyone get there the very next day to help those people?" not say, "God's trying to tell them something." What would that something be, that their government didn't care about them? That no one cared?
It just ticks me off to no end!
On 9/11 a woman at my old office said, "You gotta hope those people have given themselves up to Jesus." When I asked why, she said, "Otherwise they're going to hell."
What the BLANK!! I was in pain that day and for months afterwards, just like a lot of other people. And for years since I have NEVER forgotten what one woman said. No one deserved to die that day, not the way they did! And they didn't need anyone to curse them in their death.
Just like no one should curse these poor people who have died and suffered from Katrina!
There are really people out there who are so hateful and vengeful! The same people who said they're glad I have MS, those are the kind of people who make themselves holier than others and think that they're better. They're also the same ones who will be the first to say, "Where's mine?" when they're in need! And those people think they are actually more worthier then others. Well, not to me. Not that it matters what I think, but the people who this week "looted" stores to get food to feed BABIES and ELDERLY. Who stole food to give to OTHERS! And not just keep for themselves! Those are the people who deserve good. They deserve a thank you, a thank you for hanging on, and being there for all those others. They also deserve an apology for every dumb, idiotic statement someone stupid made this week.
I worked from home on all the rest of the week, except on Wednesday when I could barely get out of bed.
Having a virus and MS, I think that's a recipe for extreme fatigue.
Stress factor 2 and 3: Friday woke up to find my son had the "d" word so he couldn't go to daycare. Called the folks to ask if they'd come earlier and kept both kids home for my folks to watch while I took my husband, Bill, to the hospital for his surgery.
He had the hernia surgery and we were at the hospital till about 6pm. So that was an all day thing.
Now I need to take care of everything in the house. Bill can't do anything because of the surgery, except shout at the baseball game, of course. :-) So I think just the thought of the everything is freaking me out. Should I cut the lawn? Or let it grow? How much can grass grow in a month? If I were to cut the lawn, now is when I should while my folks are hear to watch the kids. Or do I come home from work to cut the lawn and leave the kids as daycare till I'm done?
Stress factor 4: My daughter. She has been good in the mornings and not in the afternoons, until this morning, when my stress level hit it's peak. I feel so bad for her because she's so jealous of her little brother, but is so awful to him that it's really hard to be there for her when she's being like that.
My parents are helping, but they leave tomorrow. I don't know how much I'll be able to put up with after a long day at work and having to bathe all three of my kids.
Three you say? Yes, when I have to also bathe my husband, I have three kids!
But, it's all payback... Hopefully if I ever need it, he'll wash my butt too one day! LOL!!!
Stress Factor 5: Had another site reaction last night. It was quick, but I think it was a culmination of everything. My face got really hot and flushed and I had the tightness in my throat and neck. I did my almost cry thing and sat back, Bill helped get me distracted by putting something interesting on TV and then I was fine about 15 minutes later. Whew! Still hate the freaking things, but if all I've had problems with is fatigue since being on that crazy drug, then I'll take it.
Okay, so the little girl just woke up from her nap, which is a feat in itself, that's a plus. And she just made me some coffee from her Mrs. Potts tea set. She's the cutest darn thing in the world. She and my son make me smile and cry all at the same time.
How can that be? How can kids infuriate and then just be the best joy you'll ever know? I would never trade it.
Yes, I'd prefer having to take care of everything when I'm not fighting a cold and when I'm not so fatigued, which could be from the cold, and without kids who are so argumentative, even my 14 month old is argumentative and he can't talk yet! :-) But how boring would my life be? Plus, I think every challenge I face since I've known about my MS, just makes me push that much harder not to let it take me over.
Sunday, August 28, 2005
My husband and I had an issue with his ex-wife and her new husband. Apparently they don't like it that we don't want to handle the problems they have with the kids when the kids are at their mom's house. They don't like that we don't want to get involved because the kids do not behave that way at our house. So this whole situation came to a head when my step-son threw a huge temper tantrum, at 11 years old and the step-dad called us screaming at us to take care of it. We hadn't seen the kids in two months. I got mad and said they created this monster and needed to take care of it themselves.
This made them so mad my husbands ex-wife told me that someone, she didn't tell me who, is glad that I have MS.
In the meantime, I've been crying all week and fearing having my step-kids over because I said, "How can we have a relationship with them when we're under scruitiny by their Mom and Step-Dad?"
My husband wasn't looking forward to it either, however, my daughter said, "Don't they love me anymore?" When another week went by and she hadn't heard from her brother and sister.
It tears me up!!
I need to have less stress, I really can't stand it anymore!
I mean, I'm not having major symptoms, except for the fatigue and wanting to bury my head in the sand, but the shots must be helping. I'm on week 40 of the shots too, so that's a good thing. It's just that with everything, the shots just don't seem to be getting easier. But maybe that's the stress. UGH!!! :-)
It will get better, it's really got to get better!
Wednesday, August 17, 2005
Anyway, I've been so busy. I started a new job on June 6 and I've been so busy there. I work tons and stress a lot and it's probably the worst environment for me, but I actually like what I do.
Aside from it keeping me from my family, it's not too bad. Oh, and the fact that it's like a frat house there.
"Other than that Mrs. Lincoln, how'd you like the play?"
My MS is okay at the moment. I'm a little sore and tired and feeling all sorts of weird things lately, but I'm trying not to go back to my current neuro. I'm waiting to get in with a new one. My goal is to go to someone who gives a crap and who's staff actually give a crap and who actually have an education.
I needed some insurance paperwork to go through and it took them about TEN weeks to get it. Ridiculous!
Anyway, I'm worried about my husband who's had a health issue come up yesterday, as a matter of fact!! I am a little scared! And with our small kids, this just isn't the time.
But other than the health stuff, I'm happy and in love with my husband and my kids. And yes, even when my nearly 5 year old daughter is driving me absolutely crazy, I still love her!!
My son isn't walking yet, but he's getting closer. He's 13 months old now and just cute as anything. He's a real snuggler!! What can be cuter?!?!
Oh... the shots, sometimes just really hard to do, but I've resorted to having a glass of wine before hand... sometimes I even skip that.
I have recently started doing a trick my husband and I taught my daughter for when she got her shots recently. Take a deep breath and blow out really hard! It kind of works, believe it or not. Anything to take the edge off and get my thumb to push the dang button! :-)
For anyone reading this and wanting to know how hard it is, I just have one thing to say, "Just do it!!" And again, my diatribe of switching sites!! It's important!! I couldn't imagine being even more pin-cushiony in areas just because I didn't switch off!!
So go for it and good luck!!
Oh... and since I'm not doing too badly, I'm thinking, hey, it's working!!
I'm signing off... I have to go enjoy our new, big, lovely bed!!
Wednesday, May 18, 2005
I was having a pretty good day yesterday so when I was first pushed into the tunnel, I saw the light at the end, or the rays from the light. I said to myself, "Okay, I can see the light at the end of the tunnel." Then I promptly started crying. I'm not sure why. It was probably a culmination of everything going on with me in the last couple of months.
I couldn't stop crying. It would get worse during the noisier passes of the machine. I really hate it! It's so intimidating.
I probably have said this in a previous post, but I have seven screws in my jaw and I still worry about them flying out through my body and killing me during an MRI. I know... I'm still a kid in my head!
The technicians at this place are so kind! They're great guys who I feel so much better knowing their out on the other side of the window in case I need them. When the first technician pulled me out after the first series of scans I said, "I don't know what my problem is, I keep crying." And he said, "Crying! Well, we'll get you taken care of here." Then he made sure to tell me how long each scan was and what was coming next. I guess to better prepare me. I just don't know why it was so hard yesterday. Maybe feeling sorry for myself.
I should find out today the result... I need to renew my Copaxone. That's waiting till we get the results.
I don't know if anyone's reading this. So I may not keep this blog up. Maybe I'll just convert everything to a diary for myself. Who knows!
Sunday, May 08, 2005
I think my husband is thinking I'm taking this Mother's Day thing too far, becuase I'm so tired today!! And taking a warm bath was the wrong choice, now I'm even more tired. But, it was so nice! I can't not take my baths no matter how fatigued or whatever they make me.
Anyway, gotta go give the Willster his bottle! Maybe he'll take a nap with me.
Again, Happy Mother's Day!
I love it... I can lay over it, and I mean, LAY over it... and do exercises and sit on it at the computer! HA!! I'm not sure that's it's purpose, but it's more comfortable then this butt-rotting chair I use currently sit in.
So, in my first attempts at the exercise, I was bounced off of it, rolled around by it, and I'm not a little person! I also was extremely glad not to have witnesses, because I would not have been mistaken as graceful, that's for sure!!
I also decided to try to do the side stretch over it without watching the instructions first... I'm not sure how to put this eloquently, but I'm sure I looked like a sack of potatoes being tossed on an oversized water balloon. With only my legs to keep me steady, and MS legs, are not exactly the steadiest, I was walking the room sideways, just to keep my balance.
I demonstrated this exercise to my husband and 4 year old daughter later that evening just to give them the show. They enjoyed it! Now my daughter bounces the ball all over the house and my ten month old tries to pound on it, while trying to stand at the same time. It hits him in the face and he giggles away.
I purchased a balance ball for my daughter so she can do exercises with me... but I recommend it mostly for laying over and relaxing! It's wonderful!!
Wednesday, May 04, 2005
But I found something out while painting today. When I use a regular brush my right hand starts to go numb. Maybe it's the MS, maybe it's carpal tunnel... who knows. But I found out that when I use the cheap, sponge, disposable brush I don't have the numbness.
They have a round handle and it's smaller, so maybe that's it. Who knows. Just thought this would be a helpful tip for anyone who's experienced the numbness while painting.
Saturday, April 30, 2005
I have been learning about adding my blog to blog directories. This is all very new to me, even though I've been an Intranet developer for over eight year. Of course, that was INTRA not INTER. And I'm also using a template... goodness!! Never thought I'd do that. But it's easy!
I'm liking this blogger.com.
Oh, and just an FYI - today I had a horrible time with fatigue again... not sure what's going on there. But I felt like I ran a marathon! My poor husband. What he has to put up with and then he even lets me get on here and type away!! Good man!!
But, these are not so bad. I had ONE bad Post Injection Site Reaction. It was horrible, I thought I was dying. But it was gone as fast as it began and I'm still here to talk about it. I can prepare for them. I just think my reaction was so bad because I thought I would have had the reaction sooner than I had. I may have it again, or I may not. And I'll just be prepared. No biggie. What other choice do I have? Right? It's a control thing! I like that I had a choice to begin with. But 'ya know, I sure do wish they'd come up with a pill form that works!! Who doesn't?!
Anyway, I switch off my injection sites. It's like the Macarena, or that Pepto Bismal commercial.
Starting Mondays, abdomen, right thigh, left thigh, right hip, left hip, right arm, left arm, "Pepto Bismal!" I'm so good!! I was so proud of myself for switching off!!
I've only missed two injections. Once because I was sick with the flu and KNEW I was going to vomit, so I just couldn't stab myself while having that feeling too! The second time was because I forgot my injection when I went to my folks house.
Ever since I had the PISR - HA!! What an acroynm! Anyway, every since I had the Post Injection Site Reaction, I try to be really calm, sometimes I'll drink a glass of wine or a beer. I make sure my husband is in the room. Though I was able to take my shot yesterday all by myself, well, at least by myself in my room. I do the whole routine, ice, but not till my skin dies - horrible!! Ice is almost worse than the shot itself. Then I do the shot, then I have a large container of Tucks Medicated Pads! Yes, I put them all over my body! The guy at the Pharmacy must think I have a horrible case of roids! But I use them for aftershot sting! It really helps!!
Then I have lumps and itching and bruises all over my body. It's kind of fun to try to name the injection site by week!
Yes, I HATE THEM!! Did I say that already? However, I really think it's helping. I still have fatigue, and after talking to a friend with MS last night, we figured out that our stress is causing our latest symptoms. Plus it's hard carrying around a 22 pound baby boy! It's tiring already. God, he's cute!! But I digress, I've been stressed from being laid off and worrying about money and not really eating well. Though the plus side to that is I've lost as much weight as my boy weighs!
So I'm sure all of that stress is causing my fatigue. I've been having really bad numbness in my right hand, I'm sure painting doesn't help that.
I have an MRI on May 17th and after that we'll figure out how I'm doing. I'll just wait and see.
Afterall, till there's a cure, I'm on injections. Or solumedrol, but that's a whole other story!
In fact, listen to line of rejection through out the day.
First, I found out I wasn't getting the job, then the guy who was supposed to come and give us a bid on tiling our backsplash doesn't show up. Not only did he not show, but he also told my friends who recommended him that he never talked to me, that he didn't remember me. HA!!
Then I couldn't even get the guy who gave me a bid to paint our stairwell to call me and tell me how much it would cost, and he said he'd call on Friday (yesterday).
Then I had to reschedule my girls poker night because everyone was backing out! UGH!!
The best thing is I went to a Pampered Chef party and I'm thinking if I don't get a job soon, I'll start selling it. Who knows!
Actually, the best thing was having a glass of cheap wine that made me feel very happy! HA!! I'm truly a light weight!!
Friday, April 29, 2005
Here's a little background since my diagnosis.
After we found out I had MS, I decided to walk in the MS Walk in St. Peters, MO. That was the first year we founded Pamela's Team. My sister, who does graphic design, created the t-shirts and has every year since. We did our 3rd walk this past April. We're not raising as much as we'd like, but we're going to do better! I'm thinking about doing the Challenge Walk next year. That will be my big feat!
I also gave birth to my son in July 2004. We decided, after almost six months of debate to have another child. I wanted to so much and I'm so glad we did. My kids are wonderful, beautiful mysterious creatures and the only thing I hope is that I have MS so they don't have to have something like this! I want them to stay healthy!
Also, last November I started taking Copaxone injections. Yes, they are the DAILY ones!!
Finally, the second Thursday of March, I found out I was being laid off. I was the Intranet developer for my company, the only one... with a back up person in the headquaters location. I was remote, so out of site, out of mind, I guess. Anyway, I was officially laid off on April 1... see, my life has LOTS of humor in it!! Unfortunately, they didn't say, "April Fools!" to me! But I'm glad. It's been a rough month, but I've been doing lots of painting in my house and work to make it a beautiful home and if necessary, a beautiful home we can sell. HA!! But that's only if I don't find a job soon!
I decided to start this blog to talk about my MS. Maybe it can help someone else. There is humor in everything. If you don't dwell on the sad and doom of it, then you can smile and say, "Hey, I have that and I'm okay!"
It also went down my left leg, into my foot. There I felt weird stuff going on, like I could feel my blood circulating in my heal... so strange.
Also, there were times when I would feel such a strange tightness in my neck that if I gave into it, I felt like my head would fall off. Such a funny way to describe it, but that's the best I can. I know, I sound like I'm a 4 year old complaining of a pain. "My head would fall off?"
Anyway, I went to the doctor and told him I thought I had a pinched nerve and told him everything that was going on and he said, "Well, it could be a pinched nerve or it could be MS." Then he told me a little about MS and said, "You're not going to get scared on me, are you? I didn't tell you for you to get all worried." I, very bravely said, "Oh no!" And snickered like I was totally fine. All the while I was feeling like, "Oh my GOD!! It's Annette Funicello! I'm not going to be okay!!!"
I really had no idea what MS was. But I went back to work, crying the whole way, and then I got on the Internet. No, I did not look at BLOGS, I went to the National MS Society web site. I recommend that for everyone!! Don't go to emotionally charged sites to find out if you have something wrong with you. Look at facts only to start!!! When you're ready, like I am now, you can go to the emotional side!
I read about the symptoms, these are the ones that made me start!!
- Blurred vision in one or both eyes, usually not at the same time.
- Numbness in hands and feet.
- Unusual fatigue.
- L'Hermites sign, the electrical shock sensation.
I was sitting at my desk going, "oh my GOD! I have had all of this." Two years before, in 1999, I had blurred vision in my right eye. I went all the way to a Retinal Specialist who couldn't explain what it was from or why, but he said, "It will go away." Not sure how he could be so sure, but he was right. It went away. As soon as he said it would. So I didn't think anything more about it.
I had the numbness and the tightness in my neck and went to a horrible doctor who said I was stressed and needed stress management. But she still sent me to a horrible neurologist who said I needed stress management. I then got pregnant and everything went away. So, of course, I didn't think anything more about it.
My daughter was born in August of 2001, I was so tired I felt like a horrible mother. Turns out, that was more than likely MS. So after looking back at all my past symptoms, I called my doctor and went back to see him. We talked and he sent me to an MRI - I won't go into that experience because I don't want to scare anyone, but by all means, try for the "Open" or larger tube ones... the original ones are just awful.
I was afraid to go because in 1995 I had jaw surgery and I have 7 screws in my jaw. I thought the MRI was going to rip my jaw off!! I'm laughing as I write this!! But man, did I do research on what's in my jaw... they're titaneum and those aren't pulled out by MRI's. Thank GOD!!
Anyway, after a successful read from an MRI, I went to a neurologist... this all took from September to November 15, the day my Neuro told me I had MS. I sat in the exam room and started crying. Then I called my husband on the phone and said, "Don't call my mother." He thought I said, "Call my mother!" I then spent the rest of the day "dealing" with this news and taking care of everyone else. It was very appropriate.
It was a really long weekend... I found out for sure on a Friday. My step-kids were over that weekend, my Mom came into town, I was not alone, but I sure needed to be. I ended up taking care of everyone else and at the same time having mini breakdowns in my head.
Such an extreme in what that diagnosis could have been, either pinched nerve or ms. Who would have compared the two? That's just crazy!! :-) All in all if my doctor was Alex Trebec I would have responded with, "I'll take pinched nerve for $1000, Alex!"
But alas, he said MS, my neuro said MS and now I say, "I have MS." And I'm doing pretty darn good!