Mistaken

Just when I thought things were improving, I was mistaken. I've had a lot of pain, achiness, irritability, fevers, chills, headaches, weakness, and pure exhaustion. I keep telling myself to call the MS Center, but then I procrastinate. Why? To avoid steroid treatment at any cost.

I woke up during the night Tuesday night because my entire body was shaking so bad, I thought I was having a seizure. I kept trying to wake Brian up, but he was pretty much dead to the world. After shaking uncontrollably for about 20 minutes, it finally subsided, and I was finally able to wake Brian up. I thought for sure I was going to be headed to the hospital. By the time the shaking was done, every muscle in my body hurt so bad I was in tears. Rebif? Not sure. Tuesday evening was my third dose at the 44 mcg. Some of the side effects include fever and chills. But shaking that bad? I just don't know. Last night was another injection, but although I woke up with some slight chills, I didn't convulse like I practically did the other night.

I will go to the MS Center, but when I'm good and ready. And I'm just not ready to deal with the effects the steroid treatments have on both my body and mind.

Tyler finally got his cast off of his arm yesterday. It's not completely healed, but the orthopedic surgeon said that if he just wears an ace bandage on it when he is active for the next two weeks, and is careful not to re-break the bones during the next two weeks, then his bones will be just as strong as if they have never been broken. So no trampoline, careful bike riding, no tree climbing. And now he gets to go swimming!!

As we are preparing over the last few days for cast removal, we had the pleasure of another family member breaking a bone. Yes, Brian broke his big toe on Tuesday evening, horsing around at the pool and slipping on the deck. Of course, no hospital visits for him, so he is just suffering with it. His boss had a mobile x-ray unit come to work to x-ray it, and it is definitely broken, but he is continuing with his normal routine. I don't see any of us females going around busting our bones!

Everyone have a great 4th of July weekend!!!

Moving Past Crabby

Yowsers! Friday night I was in bed by 7pm. I was being such a miserable beyotch that I couldn't stand myself anymore. My legs were weak and tired, and I was snapping at anyone or anything that happened to cross my path. The final straw was when I told one of the kids that the swim goggles he was wearing made him look stupid. Wth? I would never, in my right mind anyway, say anything so mean and condescending. Jeez. He's 12, getting ready to go into the stage of life when he's feeling unsure of himself, and I tell him he looks stupid.

Yesterday I was much less crabby, but still exhausted. Brian and I did some work in the yard, with me needing to take numerous breaks because I felt like I was trying to walk through mud again. After the yard work was done, we lounged in the pool for a bit. I say that me getting some sun is all in the name of Vitamin D, but my tan is looking great!! The swimming pool has been my only saving grace for the heat. After the pool, I had to take about an hour and a half nap. I just can't seem to make it through the day. If I don't get a nap, then I have to go to bed early.

Today--so far so good. I'm not being cranky, I don't feel sluggish, and I'm definitely not being mean. We haven't started our clubhouse work yet, so we plan on doing that today. I don't think the kids rrealize just how much work is going to be involved, but if they want it, they will work for it.

I've been looking into vitamin and mineral supplements that are supposed to help with multiple sclerosis. I've started taking the following--
Magnesium
Vitamin D
Vitamin B complex
Iron
Potassium
And I am going to buy fish oil and start that.

Anyone know of anything else I should add? Especially something for mood since I'm no longer on antidepressants?

Ms CrabbyPants

I don't know if it's the weather (heat) or Rebif related or part of another relapse, but misery loves company, so come join me. I can't stand myself, and I'm being downright mean and miserable to everyone around me. My whole body aches, even in parts that I didn't know could ache. And by 5 pm each day I'm so exhausted I just want to go to bed. I'm so tired I feel like I'm walking through mud. I keep getting in the swimming pool to cool off, and it helps some, but the misery comes right back.

Even though I'm miserable, I keep on tryin'. Last night the kids and I went for a short bike ride, probably about a mile. On the way back, there were 4 teenagers walking down the street-three females, 1 male. One of the females was using foul language, the "f" bomb was dropping every other word. I had an overwhelming urge to run her down with my bike. Nice, huh? I controlled my urge by keeping in mind that the police would be called and I would likely spend an evening in jail. So, I kept my temper, ignored her mouth and continued riding. Normally, I would remind the rotten teenager that there were little kids around and it would be in her best interest to watch her mouth. Instead, I thought of physical harm.

Yesterday was the first official day of summer for the kids, and by 9am the "I'm bored" and the "there's nothing to do" had already started. It's going to be a long summer! Today, we are going to work on cleaning out our barn. The second floor was used as an apartment by the previous owner's son, and he lived it in for about a year, even through winter. So we are going to turn it into a clubhouse for the kids and their friends. It really is kinda cool, so I'm hoping that it will keep them busy some days. We will put a radio, chairs, some of their toys, etc so they will have a place to call their own. Hopefully, I will have enough energy to get some of the work done today. It's my goal.

Last night I doubled my Rebif dose to the final 44 mcg. And I got medical insurance as of July 1st!!

Summer Is Finally Here!

Yay! We've been enjoying our summer so far. Today is the kids last day of school, it's only a half day so they will be here in a few minutes. Which means I only have a couple of minutes here since they are so demanding with my time! We've spent lots of time in the pool already, and it's been great since the heat is really bothering me.

Yesterday we went strawberry picking and had fresh strawberry shortcake last night, then we had strawberry smoothies for breakfast. Yum! I've been trying to go for short walks and stay active because my legs are really bothering me. I'm not going to let them get the best of me!

I had my visit with the nurse from MS Lifelines, and he thinks I'm having another relapse based on my symptoms. He thinks some of it may be side effects of Rebif, but he suggested I call my neurologist for another possible round of steroids. Hah! No insurance, no doctor visits. Hopefully I will have insurance by July 1st because I think I'm supposed to have another MRI in July or August.

Kids here already! I will be back with more updates!

Rough Going

The last 2 weeks have been rough. I've been sick, exhausted, headaches, weak, and I've been experiencing alot of pain in my hips along with muscle aches in both legs. Rebif? I'm not sure. I do think the Rebif is causing the headaches and being sick, but I don't think it's causin pain. At some points the pain in my hips is so extreme I want to just cry. Either cry tears or cry out in pain. The strange thing is I can't pinpoint what the pain is. When it hits hard, I want to move my legs but it doesn't change or alleviate the pain, which tells me it's not the muscles. So is it pain coming from the bones themselves? I've heard of bone pain, but I've never experienced it, until maybe now. And it certainly is not pleasant.

Today is going to be another one of those days. My legs are weak and my head is pounding even though I've already taken both Tylenol and a sinus pain reliever. Shortly I'm going to add ibuprofen to the mix.

Yesterday a rep from MS Lifelines called, but I didn't answer the phone cuz I didn't recognize the number. So they called Brian, and he told them how sick I've been since starting the Rebif. The rep (nurse) is coming to my house today to see if he can help alleviate the symptoms. When I called him back I explained that I can do the shots just fine because he suggested training on the injections. I'm not having a problem with the injections, just the side effects. Although when he gets here I'm going to show him one of my injection sites. It's from last Thursday and it's bright red, hot and painful-probably infected, even though I did everything I was supposed to do.

Even better news on top of feeling crappy-today is the day I increase the dose of Rebif from 8.8 mcg to 22 mcg. Yippee. I guess I'm done whining for now. I'm gonna go lay down.

Rebif Doesn't Like Me

I started Rebif last Friday. I must say that compared with the injection site reactions I was getting with the Copaxone injections, Rebif is a breeze. I get a little tenderness at the site the next day, but no redness, swelling or itchiness. And no burning!

However......... The Rebif is making me sick, and I'm still at the lowest dose 8.8mcg. Next week it goes up to 22 mcg, then two weeks later the max dose of 44 mcg. If I feel this way now....I have been nauseous, dizzy and having headaches. In addition, and I'm not sure if this is related to Rebif or just the way the MS is going, I've been having a lot of pain in my legs and hips, and the exhaustion is severe. As a matter of fact, I just woke up from about a three hour nap. Jeez. What a way to spend the day!

Young man went for another follow up visit yesterday for his broken arm, and based on the x-rays, things are healing nicely. The orthopedic doc took off the old cast, which went from fingers to shoulder, and put on a new cast, this time only from fingers to just below elbow. Tyler feels like a new man with more freedom now that he can bend his elbow. I still can't believe just how well he is handling this. The itchiness gets to him, but he sticks the handle of a spoon in the cast and itches gently. It seems to be working. I can't imagine having an itch I couldn't scratch, it would probably put me in the nearest looney bin.

News Alert!!! The ex has filed the divorce papers!! Which means---in a couple of months the divorce will be final and Brian and I can finally get married! We've been waiting for this forever it seems. The separation was filed in 2005, so it's been 4 years.

I think thats it for now. Unfortunately, I'm too tired to think straight.
Take care everyone.

It's Been A Week From Hel......

The stress children cause:

On Sunday, I received a call from the ex. The youngest, Tyler, 7, seems to have hurt himself and the conversation goes a little something like this.

Him: Tyler hurt his wrist.

Me: Oh. Ok. What happened?

Him: Well, I'm trying to decide which hospital to take him to to have it checked. Should we go to (and he names three hospitals)?

Me: Why? Do you think it's broken?

Him: Ooooooh yeeaahhh.

Me: (*&^%$#@() kaaaaaBOOM) That would be the sound of stress, anxiety, fear and probably high blood pressure all rolling into one and exploding out the top of my skull.

Rest of conversation: who knows, I blocked it all out. So here is the little guys x-ray:

Might be broken, ya think? Geesh. Both the ulna and radius of his left arm broke right above the wrist. He was playing on a rope swing and fell. Luckily, no surgery has been necessary yet. I won't go into details about the hospital visit other than to say that I DID NOT hit the floor when they straightened his arm, although I'm still not sure how I was able to stand. And, I still can't sleep at night because as soon as I lay down, the images come back, him being in shock, the look of fear in his eyes, the visible pain he was having, and the look in his eyes while straightening the arm. Yes, he was sedated for about 10 minutes, but he stared at me the whole time. The Dr and nurse insisted he was sleeping, but his eyes stayed right on mine. You know how moms are--they want to take the pain away and have it themselves rather than the children go through it. But I couldn't and still can't take it all away.

On a good note--he is handling it really well. He was an excellent patient throughout the entire ER visit, and he is doing well. He has a cast from fingers to almost his shoulder because if any of the bones shift at all he has to have surgery. Not that anytime of year is good to break a bone, but we just got the pool open for the summer and the poor guy can't even enjoy it! He'll probably have the cast until Mid-July if things go well. This is new to all of us. I've never broken a bone, nor have my siblings, cousins, etc. Even with all the stunts we pulled as kids.

Other news: Wednesday night we went to the Dave Matthews Band concert. I just love him, when he came on stage I got the chills, and for certain songs I would get the chills again. Now just to get the chance to meet him! It was a GREAT show but it rained. Not just a little either. One of the reports I read after the show called it "monsoon-like weather", and we had lawn seats. Oh MY! I've learned a couple of things--we are getting to be too old to hang out in the lawn with the teens and young adults. And we are too old to hang out in that kind of weather. From now on--RESERVED SEATS! I don't care how much more they cost, at least we won't get wet! I keep waiting for the pneumonia to strike us!

Rebif treatment starts today. It arrived by FedEx this am, and I'm not looking forward to it. Since I've started going off all my meds (due to cost), I have been feeling better. Still have symptoms and my right leg is starting to go bad (I'll be dragging it behind me soon), but overall I feel better. I have more energy and I'm not as irritable. My frame of mind has gotten much better, so starting yet another drug is not something I look forward to. Anyone on Rebif, and what have been your thoughts on it?

I think thats it for now. Housework to do, especially the neverending laundry.

Take care everyone!