A Much Calmer Night

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Boy I was hell on wheels last night (see yesterday’s post). I do have a bit of a temper, but as I said last night, I’ve never lost my cool with this friend before. As a matter of fact, I can’t even think of many friends I’ve ever lost my cool in that way with. I mean, okay, there is the friend who told me I was stupid to start blogging–by the way he sent me a random text tonight about Caillou. It actually made me laugh, but I’m not buying into the game. When we were really good friends a few years ago my youngest daughter had a bit of an obsession with Caillou. For those of you fortunate enough not to know what the heck I’m talking about, Google it. He’s a bald, whiny little boy, that complains about everything. I can’t stand that kid. Apparently my ex-friend’s (LOL) daughter was watching the show on television this evening.

Anyway, he is really the only friend that I can think of that I got into fights with. I mean really arguments. No matter how angry I am, I don’t say mean things to hurt people, and unfortunately he can’t say the same. When I argued with my friend “Lilly” the other night I was harsh, but never mean. I didn’t call her names or use mean language, or say one thing that I regret saying. What I said, she needed to hear. Whether she took it in or not, I have no idea. My guess is no, but I gave it a shot.

Today was hectic again. I feel like I have so much to do before we leave on vacation and not enough hours to get it all done. I need to do some serious cleaning tomorrow and organize the kids’ bedrooms. Even if I can just get the kitchen, living room and bathrooms set, I will be happy.

My back and hip are still pretty stiff and nothing I’m doing is really helping. I go back to the rheumatologist the week after I return from Florida, but even with all my online research, I’m just so hesitant to start anything new. I’m not great, but I’m certainly not as bad as I was during the winter. I think if I’m going to break down and try something new it will be when I’m in desperate need. I know I’ve asked a lot of questions through this blog on Lyrica and Cymbalta. Those two drugs seem to be what are commonly prescribed for fibromyalgia. The side effects make me really nervous. First of all with so many people claiming a 30lb weight gain with Lyrica, I’m super hesitant to jump on that bandwagon. I already feel as big as a house.

With Cymbalta I read things like thoughts of suicide, and other side effects. I know they have to list every single thing every person noted, but I get nervous. Right now I’m still on the Flexeril 10mg at night, but I really don’t feel like it’s doing that much. Lots of people say they feel sleepy and relaxed. I feel nothing…seriously nothing. Sometimes I wonder why I take it, but I think overall it does reduce my migraines because my neck doesn’t get as tight.

The other thing the rheumatologist is going to bring up is doing those trigger point shots again. I’m going to give those a big thumbs down for me. The first time I thought they really helped. I’m not sure if he hit a nerve, or if that’s even possible, but beginning just two days after the shots I add a marathon three-week migraine and I would prefer not to relive that experience…ever. What I might do is ask to try a different muscle relaxer, not necessarily a stronger one but possibly a different kind. Any thoughts on this? Is anyone taking something for fibro that they actually feel is helping?

It’s really difficult because I feel like the fibro is affecting all my muscles and the RA affects my joints. The combination is just not fun. I know it could be so much worse, but I’m trying to think ahead for the winter months and have some sort of plan of action in case I have a really bad winter again this year. Any help is appreciated. I know different drugs work for different people, but I’m always interested to hear what people think is actually helping them to feel better. There are dozens of medications and I’ve taken so many that I just don’t think have done anything for me. It’s just not worth the risk if it’s not helping.

Then I’ll add into the mix my yearly ob/gyn appointment. I work myself up into a frenzy each and every year, but this year I’m already a wreck. My appointment isn’t until August 5th, but I’ve already decided that I have a cyst on my ovary and I’ve probably waited too long to deal with it, and it’s going to be cancer. After all, I’m 42 and my mom died at 43, and this has been my fear all along. I don’t know how to stop the irrational fear…at least I hope it’s irrational, but I can’t shake it this year. I have been having pain on one side, similar to the type of pain I get with a cyst (which is all too common for me and they are usually normal). The truth is, I’m just scared. This is going to sound like the most conceited thing ever, but my kids won’t make it without me. I think about what their life would be like with my in-laws calling the shots. They haven’t got a chance.

So I can’t die. For that reason alone…my kids need their mother…I can’t die. It’s going to be a stressful few weeks and I see a few Xanax in my future. We do what we need to do to get by. One day at a time.

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Go Away Exhaustion

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I don’t have time to be this exhausted. I taught my class (not nearly as hard as Tuesday) and went out for a quick breakfast with a friend that was diagnosed with cancer. I had no time to be exhausted, as I really wanted to focus on her. I wouldn’t say we are super close, but she is the type of person that you meet and love right away. She’s funny and kind, and she likes the same trashy reality television as I do.

She has had a crazy year, first with a blood clot in her leg and now with cancer in her bone marrow. The levels are very low and at this time they are watching er very closely with blood work every few weeks. Should something drastically change she’ll either need to do oral chemo or regular. Either way, suffice it to say, she’s got a lot on her plate. She is choosing not to dwell on waiting for that moment to happen because it could be next week or it could be ten years from now. They have no idea.

It was really inspiring to talk to her and see the way she was handling her situation, and it certainly made me put my own things in perspective. The other thing I left that breakfast thinking was that I am so lucky to have so many people in my life that crack me up on a daily basis. Laughter really does help with everything.

So with that perspective I went forward with my aches and pains and took them in stride. The exhaustion was another story though, as I came home and could hardly stay awake. I took a nap for about an hour and a half…really could have slept longer, but I had to pick up my older daughter early from school because of a dress rehearsal for dance.

I talked with my friends today about the situation with my son on the bus, and they spoke to their son. I’m just feeling a lot better about it. I got so stressed because of everything that’s gone on with my son lately and all the bullying, but these people are great parents, and I know their son is a good kid. It was good to get the other side of the story and I feel much better knowing that they talked to him and he understands a little better that my son is just struggling to fit in, something his parents said he struggled with last year.

My girls had their rehearsal and it was adorable. I love watching them perform. I think my younger daughter is so in lover with her costume, that she was just so happy to twirl around. She little class was kind of all over the place, but it was so darn cute. My older daughter has grown a lot as a dancer this past year. I’m really excited to see the show on Saturday. It will be fun.

In terms of my autoimmune issues, the only things I’m really struggling with is the exhaustion. I’m just so darn tired. It’s not that I haven’t been sleeping. I’ve fallen asleep around midnight every night or earlier, which for me is not bad at all. Taking the melatonin early has been helping me. Tonight I forgot so I took a half of an Ambien. I’ll end this blog soon before it kicks in and I start rambling or open another browser page and start shopping.

I hope everyone is doing well and having a pain-free evening.

 

The Day After a Meltdown

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It’s 1:00AM and I’m still working. That does not equate to a good day. I spent most of my day coding baby food for which states it is approved for WIC. Doesn’t that sound exciting? It wasn’t!

I finished that about 11:30, and I need to finish this girl’s novel by tomorrow. I wasn’t expecting the baby food to take as long as it did, so I’m in panic mode trying to finish it. I’ll probably go to bed after writing this blog, and try and finish the rest of it in the morning.

It’s funny, this client was bothering me to no end last week, and now I’m scrambling like hell to help her. I guess I am nice sometimes 🙂 She’s actually a nice person. I think she was just getting the runaround from the self-publisher that she was using. Please, if you’re writing a novel and you plan to self-publish, do your research on reputable publishers. Or, feel free to shoot me an email. I’d rather answer questions than see people in the situation this poor girl is in, having spent a great deal of money with a messy manuscript.

The funny thing is that I’m really enjoying it now that I’m putting some work into it. I think it’s going to do well for her.

Despite going at high speed for more than a week now, I have to say I physically feel pretty good. I have been pretty surprised that my body hasn’t cried uncle with a rheumatoid arthritis or a fibro flare, but so far so good. The only glitch in my day that caused physical pain was of my own doing!

I was carrying groceries in from the car and I tripped over a loose brick in my walkway. I scrambled to regain my balance and in the process and did something to my right thigh. Whether it was a twist or a pull…no idea, but all I can tell you is that it hurts. I’m icing it.

If you read last night’s blog you know I had a meltdown last night. It was ugly. I’m not even sure I made sense because I didn’t want to go back and read it because I didn’t want to relive any of it. I didn’t end up calling my doctor with my busy day, but I do have an appointment to talk to someone with MediFast tomorrow, and I’m going to give that a try.

I am also going to call my doctor tomorrow to schedule to CT scan. It just didn’t get done today because the whole thing seemed very overwhelming. I know I need to do it. I’m actually very afraid to hear the word cancer. Cancer of the whatever…I just need to hear that I don’t have cancer.

The unexplained weight gain is really throwing me. I’ve been eating so healthy. I’m not saying I never have something sweet, but I am usually staying at around 1,200 calories a day and I’m not losing anything. I just need to get things checked out and I need to start something so I’m working toward a goal.

Perhaps taking thinking out of the equation is the way to go for a month or two. Most things are done for me, and I make a healthy dinner, which I’ve already been doing. It’s also something where I have a coach that I check in with that might help when I’m having a meltdown. I don’t know…to be honest, I turn inward when I’m having a “moment.”

I just know I need to try something. It’s not cheap, but I’m doing it for me.

 

Just a Blah Day in Autoimmune World

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I just blah today. In terms of pain, today was not so bad. I’m thankful for that, but I feel like I could sleep all day. I’m not sure if it’s because my birthday is this weekend. I love birthdays, but for some reason as I get closer to the age that my mother passed away, I’m having a hard time.

This year I’m turning 42, and my mother died of ovarian cancer at 43. It’s a whole new perspective of how young my mother was, and how hard it must have been to know she was dying and leaving her children.

Now that I have children of my own, and I’m almost reaching that age, it’s just really hitting me hard. I need to focus on how thankful I am for every single minute with my kids, and for all the good days. My goal is to find something to laugh about every day, and I will say for the most part, I have a lot to laugh about — even if it’s at myself.

I’m not sure what we’ll be doing for my birthday, but it’s not much. Money is a little tight, so it might be dinner and cake at home this year. We’ll see. Usually the kids decide what they are doing for me, and that usually means me taking them out to dinner.

On another note, I’ve been cracking up all day at the hideous comments people have posted, emailed, and commented in response to my request for the worst things you could say to someone with an autoimmune disease. Okay, okay…they shouldn’t be funny, and they probably weren’t at the time, but I think it helps to laugh at the stupidity and ignorance that the Dr. Googles of the world spread around.

Heck if we listened to people like this, we’d all be cured by glucosamine chondroitin and Salonpas. When I read some of the stupid things people have said to my readers, all I could do it laugh and feel closer to them, because I get it.

An invisible disease is difficult for people to understand. I felt very alone in this, even though I had a few friends that tried to be there for me (including the one that thought this blog was a terrible and negative idea). People don’t want to hear that you are in pain all the time. They want you to respond that you are “fine” or “doing better” because they have no real time to hear your story.

So we stop sharing, or at least that’s what I did. There was an obvious look of disinterest from people and I just started saying I was fine. To connect with people who understand when you say you’re in pain but can’t even pinpoint what hurts, that’s been priceless to me.

Keep the stories coming. It’s going to be quite a list, and I know you’ll all at least crack a smile because we get it. We know how stupid these comments are.