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!