Yep, Still Coughing

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At some point soon, I’ll call the doctor and let her know that I can’t stop coughing, but in order to do that I need some free time. I fell asleep writing last night’s blog so I scrapped it and started a new one for today. Today was my second real day in the “office.” I was working out of the pediatrician’s office today…remember last week when I had all that time to write an extra long blog because there was nothing to do? Well, it wasn’t like that at all today!

It was really busy, and I have to be honest and say that I loved it. I loved working with the doctors and learning the background on patients prior to speaking with them. I loved learning how to look up prior evaluations and read reports so I could familiarize myself with the child’s history prior to calling the parent. That makes my life so much easier. I can actually prepare a bit before making the call rather than going in blind and having to call someone back after gathering information.

Dare I say it? I liked working in an office. I’m kind of laughing because for the majority of the day I was alone in a room. The occasional doctor or office person stopped by, and I did get to meet with one family in person, but other than that it was just me. Kind of like being at home without the pajamas. I think it’s going to be a good thing for me, and it’s definitely going to be a great thing for the nonprofit organization that I work for because we will get to see so many more clients this way.

I titled yesterday’s unpublished blog, Laughter Makes Everything Better, and although I didn’t laugh as much today as I did yesterday, the same holds true. Yesterday I had two friends and their kids over to swim. I know a lot of people in my town, so this makes people think I’m not anti-social. I never said I wasn’t friendly. I suppose I’m friendly, I just have a difficult time getting to know people. The two girls that came over yesterday are two people that I met a few years ago and I instantly clicked with because they are both “what you see is what you get” kind of people. They aren’t pretentious. They are just plain nice and seriously funny. We were joking about our school Facebook pages. The are these parent-run group pages and at times you would think these people have nothing better to do than spend the day asking and answering questions on Facebook. In July, people are worried about the lunch menu for the first day of school. They are concerned about whether or not their child is capable of buying lunch in 5th grade.

So, in true silliness, two of us acted out the posts for the one that hadn’t yet read them. I was laughing so hard I was in tears because I was channeling some town members who clearly had their undies in a bunch of the subject. It reminded me that we all need to spend a little more time laughing and a lot less time getting stressed out over stupid things. We all do it. I do it! I might not be griping over school lunches in July, but we all have dumb things that we stress about that affect us in many ways. I need to stop, take a deep breath, and let it go.

I’m finding myself saying that phrase (and singing it thanks to Frozen) more often these days. I’m trying to get my son to relax, and I think the best way to do that is to show him that I can relax, too. I’m working on it…it will happen at some point. My son had a day off his meds (thanks to his dad) and it took me about 5 minutes after I got home from work to notice. His therapist today said that she thinks some of the behaviors, outside of today’s obvious ADD behavior, were–gasp—hormones. She told me that him being an ass to his sisters was normal. Dear god! Please tell me that’s not normal. I may not survive this puberty stuff, though I’m not quite sure he’s there yet.

I’m happy to announce that his travel baseball is done (hurray for me) and tonight started football camp. Next week football begins 4 nights per week. Oh, did I mention that I have Wizard of Oz Thursday through Sunday this weekend and next? I’m trying not to think about the exhaustion. I’m going to take one day at a time, and rest during the day.

While my arthritis has been better, I’m going through that part of fibromyalgia where my sin is so sensitive to the touch. It’s also itchy all the time, though I’m not sure if that’s fibro or just me. I read online that someone was using a weighted blanket and they found a lot of relief with RA and fibro symptoms. I’m dying to hear if anyone else has tried this. Part of me thinks it’s an interesting theory, though the other part wonders if even the slightest thing bothers me in terms of touch because it’s like I’m hyper-sensitive, then maybe the weighted-blanket might be too much. I don’t know, but I’d still like to try it. I might try and make one–you know, in all my spare time between when Wizard of Oz ends and Nutcracker begins and my free days from football–oh wait, I will have to figure out how to make one on the field or in the auditorium. That’s my only hope! The life of a mom, but I wouldn’t trade it.

Tonight’s rant out of nowhere will be on Sister Wives. I believe I’ve had this rant before, but I can’t help it. I need to discuss Kody’s hair again. First you have Meri wanting him to straighten his hair to look like Keith Urban. OMG, people, that was hideous. Then another wife…I don’t even know which one, wanted a pony tail. Then they had the tell-all and all the women discussed the hairstyles and which they liked best. This was their moment! This was their time to say, “Kody, trim the freakin hair. You look terrible.” But, no! None of them did that. They all said, “Oh I like his hair best just like this, all fluffy.” WHAT? I might be able to get past the fact that you are sharing your husband with other women, solely on the fact that if I had someone help cooking, cleaning, and babysitting, I might not think it was such a bad idea either. Heck, if it got my husband out of the house a few nights and I had the bed all to myself, even better. But, the hair? Oh no! I don’t think I could put up with the fluffiness.

Tired of Coughing

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It’s been a week and a half and I can officially say I’m tired of coughing. I’m tired of stifling my coughs at times when I should remain quiet (like during my daughter’s performance). I’m tired of the coughing fits that keep me up at night, as if my insomnia wasn’t doing that well enough on its own. I’m just bored of having the same damn symptom and it’s not really getting any better. My throat is no longer sore. I’m not stuffy and my fever is gone. It’s time for this cough to go!

Today was rather unproductive. I’ll start by saying that I wrote a whole blog last night and when I went to publish it, it had an error and got lost in cyberspace. It reverted back to a version I started a day earlier and was missing everything I wrote about from yesterday. By that point it was 1AM and I was annoyed so I skipped a blog. Forgive me. I’ll give a quick recap of my weekend.

I spent most of it at The Wizard of Oz performances. I will go on record and say out of the 35 munchkins, I don’t really like about 6 of them. They don’t listen and they are rude. One of them is out of control and his mother is sitting about 10-feet away while we are trying to discipline him, and yet it’s all she can do to look up from her book. Clearly there isn’t much discipline going on from her. Then there is the wandering kid. I found him in the woods (it’s an outdoor theater). I found in sitting in poison ivy. I’m trying to get kids dressed, makeup on, etc. I can’t follow this child around. He needs a leash. And then there is the girl whose mom is on the board of the theater. I told my daughter if she ever acted like this girl, I don’t care what part she had in the play, I’d pull her out for being disrespectful to adults and the other children. Let’s just say she’s a brat.

Aside from a few mouthy ones, the other kids have been great and it’s been a really fun experience. My daughter was really exhausted today, though. She slept until 10:30AM. y

For the second day in a row I took my son to his playoff baseball game, only to get there and have it canceled due to weather. Today I completely understand, though I wish they called it before I drove all the way there. Yesterday it was sunny and nice. I was annoyed. The rest of my family ended up going out on our boat, but as usual, I opted to stay home and sleep. These late nights in the outdoors have been tough for me.

It gave me a little break from the kids as well. I needed that. They are with me 24/7 during the summer and I’m not ashamed to say I need a few minutes of peace. Today I had to bring my son for his check-up, which I knew was causing him a lot of stress. Apparently his friend told him there were shots involved, so he sat next to me picking at his nails, as he does when something is bothering him. I tried to talk to him about it, and we ended up talking for a while, but I didn’t know if he was getting shots or not. All I could tell him was that I thought he was making way more out of the shots than they really were. He hasn’t had a shot since kindergarten so he’s building it up in his head as this terrible, awful thing.

Okay, no one LIKES getting shots, but he needs to do it. So we get there and we’re in the waiting area and he starts to cry. I felt so bad for him, but he has this anxiety that just takes over (you’re welcome, son) and it’s hard to shut it off. I talked him through it, and then when the doctor came in, he explained that my son actually couldn’t get his shots today. We did his physical early because he needed the paperwork for football, but his 11th birthday isn’t until the end of August. So…the ppor guy needs to go back on the 25th of August for the shots. Gee…can you guess how much fun that’s going to be for the days leading up to it?

The only other news of the day is about my knee. Out of nowhere when I was walking today, I had an intense pain in my left knee. First, I’ve never had pain in my left knee, and second, it was strange. As sharp as the pain was, it seemed to go away quickly, but it did happen a few times this evening. I’m going to see how it is tomorrow when I teach my class before I worry about it.

In random news of the night, let’s chat about Jay Z and Beyonce. First, I was watching Saturday Night Live this weekend (a repeat) and they had this skit where a guy didn’t like every one of Beyonce’s songs so they had the Beyonce squad after him. It was a hilarious skit. It you have seen it, it’s worth looking up on youtube. This may make me lose some readers, but I’m going to be honest and say I’m not really a fan. Ok, who didn’t like that song “To the left, to the left”? She has some catchy tunes, but overall, she just isn’t my favorite singer/artist. I don’t own anything by her on my iPod.

I guess there are rumors that they have a marriage therapist with them on tour and that there are marital troubles, with the first real sign being when Beyonce’s sister, Solange (and didn’t that girl get the short end of the stick in life?) and Jay Z had that fight in the elevator. I found that to be hilarious, too. Mostly because I think they always act like they are better than everyone, and it’s nice to see that they are human–and that he got his ass kicked in the elevator by a girl!

Now, I’m the first person to say it’s wrong that anyone was picking on their daughter’s hair. That’s not right, but would I shed a tear if they were breaking up? Of course not. I don’t know them. I’m not invested in their conscious uncoupling. I couldn’t even name one song by Jay Z. That’s my two cents on the subject.

Enjoy your night everyone.

I Shouldn’t Be This Pissed Off

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Maybe I shouldn’t be, but I am pissed. It’s opening night of my daughter’s play (she’s a munchkin in the Wizard of Oz) and when does my husband get home? 5pm. That doesn’t sound so bad, does it? The play starts at 8:30, we need to be there at 7:30 to get a spot. All is good. But, no. No, he takes my other two children out on the boat to go tubing “for an hour.” Because I’m so sure that was really going to happen. Somehow I knew I’d be carrying chairs, blankets, food, and everything else into the outdoor theater…and I was right.

Let me recap. I’m sick. I have strep. I’m coughing like a maniac and using my rescue inhaler consistently every four hours. I get my daughter to practice on time, do her make-up, etc. then I lug all our crap to the line. Twenty-minutes later, someone taps me on the shoulder and says that they think my mother-in-law is trying to describe me to people who work there. Did she tell me she was coming? Of course not? Will anyone that works at the event know who the hell I am? No. My daughter is not the star of the show, she’s a munchkin. There are about 30 munchkins. I doubt most of the people who work there even know her name, let alone mine.

Long story short, a friend of my sister-in-law’s saw her and pointed her in my direction. So now I was not only lugged four fold-up chairs, and two large canvas bags with food and blankets, I now had my mother-in-law. My night just kept getting better. When we finally were allowed in and got set up, I sat down to relax because walking with, and holding the chairs was way more than I should have done. On one hand, during my two trips from the car with the chairs, I got a decent workout, but while trying to carry everything at once to the seats, it was painful.

My son called a few minutes after we got settled to inform me that I gave his dad only two tickets and they needed three. My answer: buy one at the door. There wasn’t much I could do about it at that point. We also had to go over what food I bought, which further annoyed me. Then when they arrived, I got another call that they forgot the tickets in the car so I needed to come up to the ticket stand and wait with the kids while the husband went back for the tickets. I swear his head is up his ass sometimes. So he gets back and gets in line to buy a ticket and realizes (DUH) that I DID hand him three tickets (Of course I did!).

Let’s just say he annoyed the crap out of me from 5pm on this evening, but once the show started it was all about my daughter in her 10 minutes on stage (LOL) with her headband with flowers sticking out of it. This was the first big show that she didn’t look scared. It’s a big deal, so of course I cried. I always cry…at everything. It was a good show. Perhaps I’m biased but I think they could have found some better singers for some of the lead roles. While Dorothy was a great actress, she wasn’t that great of a singer. She was good…but not fantastic. I guess I’m comparing it to when my daughter was in the Sound of Music. The girl who played Maria and the teens in that just blew me away. There seemed to be a lot of nepotism with this theater company though. The board members all had big roles like the Scarecrow and Lion, and there was a munchkin that drove a lot of us parents nuts.

She needed to be front and center for everything and was picked first for anything and everything…yep, she was the daughter of someone who worked there, too. My daughter isn’t the kid who cares about that stuff. She’s still really shy and not even raising her hand for special parts (I’m working on those pep talks), but I overheard a LOT of chatter from other parents about how upset their kids were. For my daughter, the whole thing was fun and truly, what more could I ask for? I am very proud of her.

And I’m also proud of me, because after wanted to disown my other two children due to their behavior yesterday, I can honestly say I enjoyed time with both of them today and they were so much better. As a parent, I guess it helps to know we all have those days. If you spend too much time reading Facebook there are so many phony people. I have people on my friend list that are posting like 10 pics a day all summer about how they are spending time with their kids. I don’t need to take a picture and put it on social media to show that I’m spending time with my kids. I read with my son for over an hour today. I didn’t put that in my status or take a picture for instagram.

I find myself just working hard on keeping it all together. I’m a mom of three living with an autoimmune disease. I don’t know what I’m going to feel like tomorrow and that makes planning things very difficult. It scares me, and it scares my kids at times. I don’t dwell on it too much because I’m well aware that things could always be worse–and I’m not one to tempt fate and have God show me how much worse it can be.

I guess my moral of the evening is that I think most of us are struggling to hold it together. On the outside everyone seems like they are doing great, but we all have those moments in the car where we are yelling at the kids, or panicking for what seems like no reason, or just grumpy because you feel like crap. Everyone has something going on and some of us hide it, others talk about it. There’s no right or wrong way, but today the phoniness of Facebook was bothering me so I figured I’d vent about it.

I’m really happy that you and your kids are tracing leaves and that you have the nicest husband ever. Mine was a jackass tonight, but my kids didn’t annoy me today so I’m still going to call that a win!

 

Warning: This Blog Contains TMI

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You have been warned. You might want to turn back not, especially if you don’t do TMI well. Let me be honest, I don’t share TMI well, so this isn’t easy for me either. I feel beyond horrid today. While my throat is no longer sore and I’m not stuffy, I can’t shake the annoying cough. I can handle that for the most part, except for the occasional coughing fits that sound like I’m going to hack up a lung.

The TMI part comes in after I provide a little background info. As I have mentioned in several blogs, I lost my mom to ovarian cancer when I was 14-years-old. Because of this, my gynecologist has me on birth control pills to suppress ovarian function as a preventative for ovarian cancer. I’ve been on the pill since my youngest daughter was about 6 months old, so for argument’s sake, let’s say 7 years. It’s a low dose pill, and the first one that is so low that it doesn’t make me nauseous.

A few years ago after having a spell of horrific migraines, I was switched to being on the pill for three months at a time, and then one week off to cut down on that hormonal migraine week where I get the terrible migraines. All this has been fine. No problems at all. With the pill I’m on, I hardly even get a period (here comes the TMI). But as I mentioned in a previous blog, I’ve been feeling bloated and like something was wrong.

I was having sporadic sharp pain on one side, but it was not enough to worry about–just here and there. I actually have a high tolerance of pain (or so I’ve been told) so it’s not like I’ve been doubled over in pain or anything, more like a sharp cramp and then it’s done. Out of nowhere today I got a very heavy period. I can’t remember the last time I had one like this but it was after I had a large cyst and it burst. So, in some ways, I’m actually feeling a tiny bit better. Okay, I’m in pain, and I physically feel like shit, but mentally I’m thinking it was likely a large cyst again; it burst, and I’m going to be okay.

Of course, I will have to confirm this first at my gyno appointment on August 5th and then at a subsequent ultrasound that I will schedule right after the appointment. It may sound silly, but I feel like it’s a positive thing that I feel like crap. There’s me…looking for a silver lining!

I was asked to do a guest blog on a rheumatoid arthritis site. I will post the link when it appears. I’m actually really excited about it. They are looking for some personal stories and they approached me because of the blog. I love any site that brings awareness to RA and the people who are living with it. I have learned so much from the people I’ve connected with through this blog and look forward to continuing that and heck, if I can connect with more of there, that’s great too.

I think we all bring something to the table, whether it’s a simple trick we’ve learned to help get through when your hands are swollen, or an uplifting story about accomplishing a goal with RA. Boy, after my trip to Disney last week, I’m anyone’s cheerleader. It really reaffirmed to me how difficult it is to live with an autoimmune disease like RA, and let’s just throw in my fibromyalgia for a little more fun. My mind wants to keep up with my family and do everything, but my body can’t. That was a really tough lesson, and I had to learn it myself. As much is it sucked getting sick or almost crying standing in line on the third day in the parks, I had to try.

Now I know what is best for me and how to space myself out. It’s not ideal and it likely never will be again, and yes that really sucks. I know, though, that it can always be worse. Okay, I probably won’t be the mom running the marathon or who can stand on line for 6 hours to wait for tickets for a concert. I am the mom that will be waiting inside with hot cocoa or will always be there to talk or listen. Again, not perfect, but I have to find acceptance. My trip helped me a bit with that.

As I stood in Hollywood Studios leaning on my son in the Star Tours line and he knew I was not okay, that made it far worse than needing that darn scooter. My son came home with questions like, “Are you going to have RA forever?,” “Is there any chance that you could get better?” and things like that. I’d rather just not have him see me at my worst. It’s okay that they understand Mommy needs to rest a lot and Mommy is in pain sometimes, but Mommy didn’t need to push herself that hard. I don’t need to let my RA control me…I just need to be a better scooter driver and control my own RA!

Tonight’s picture is a cast picture of all the Munchkins in the Wizard of Oz, including my daughter. Opening night is tomorrow night. I’m so excited!!

Blogging from Work…with People

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Here I am at work! It’s my first official day at the pediatric office. I don’t work for the office. I still work for the non-profit organization, and I can tell some of the doctors are still a little confused as to what I do. The last one who came in had the most background in special education. She promised to keep me busy with a lot of clients and seemed really happy to have me on board.

It’s a huge deal for me to be here. The fact that I have nothing to do kind of sucks, but apparently they thought I was starting next week, and it’s also going to take a little time to build up some referrals. Everyone has been really nice, so I guess I can call this a success. I made it through the door. I didn’t need a Xanax, and I’ve been pleasant to everyone.

My cold/strep/sinus thing seems a bit better today. Today is day 3 on the antibiotics. I’m still coughing, but I don’t feel like I got hit by a truck anymore, so that’s a definite plus.

I’m gearing up for a long few nights of Wizard of Oz. We have two nights of dress rehearsals, and then opening night is Friday. We are going to watch the play Friday, and I’m volunteering backstage on a few of the other nights. My plan is to go home and nap after my few hours here, and then hopefully be in good shape to volunteer tonight.

My daughter doesn’t seem overly thrilled about it. She was placed on the second tier of the stage and secretly I was happy because she is tiny and I couldn’t see her at all, but she’s kind of bummed because she doesn’t get to do as much bopping around. I am just happy she’s doing it!

My rheumatoid arthritis seems to have calmed down quite a bit. My legs aren’t as sore, and my feet aren’t swollen anymore. My fingers still look a little bit swollen, but I’m not in as much pain overall. I still feel achy, but the intense joint pain has subsided. I guess I have a new plan of action should I ever go to Disney again. I need a scooter every other day. I think that would really cut out all the fatigue and swelling.

My new fear is that I’m hitting menopause. It’s been really hot out and I keep getting sweaty…of course this subsides if I turn the air conditioning on, but I won’t pay attention to that kind of reasoning. The weight gain, the “hot flashes,”—it could be!

I have two big appointments coming up. One with my gynecologist and one with my rheumatologist. I’ll be honest and say I’m pretty nervous about seeing my gyno this time. My mom died of ovarian cancer at 43. I’m 42 and I’m bloated and I can’t lose weight. I just want to hear that I’m okay, and then I want to discuss elective ovarian removal. I’m not sure I can afford it, or if somehow, we can make it medically necessary since I’m so prone to cysts, but I live in constant fear that  I’m going to get this type of cancer and die. I just want to get rid of those parts.

The next appointment with the rheumatologist is really to discuss what’s not working. I still get the neuropathy symptoms and I intend to discuss going on gabapentin with my doctor. I also want to discuss something other than Flexeril because I just don’t feel like that is doing anything at all.

Perhaps I’ll spend a little time looking up different muscle relaxers since apparently I have some time to kill. Don’t get me wrong. I can already tell (even though I’m sitting here writing a blog) that this is going to be a great opportunity. The doctors are excited and seem to already have families in mind that they can refer to me. I think my first few weeks will be boring. As the office manager said, everyone is cramming in check-ups for sports and back-to-school. They aren’t thinking about their educational services or developmental delays for the most part over the summer.

I tend to agree, but instead of using that as an excuse not to come, I need to keep showing up and letting them all get to know me. I just need to bring things to do. Next week I’ll work on the newsletter or something. I’ll figure it out.

Since I’m bored and I have time, I might as well let you in on what’s been going on with my “friend” who deleted me from Facebook–the one who told me this blog was a terrible idea. While I was on vacation he sent me a very nice email, to the effect of, I know we’re in a bad place, but I want you to know that I give you a lot of credit for the man I am today and thank you for helping my children and me through some very tough times.

While this caught me off-guard, there were signs that he was trying to be friendly. He had sent a text or two and he unblocked my cat from Facebook (yes, my cat has his own Facebook page and yours should, too!). I don’t know if he unblocked me, because I made the decision to block him to take the control away from him because he has friended and unfriended and blocked and unblocked me more times than I can count.

I responded to his email thanking him for his kind words, and assuring him that he and his kids would always have a special place in my heart and that I was so happy for them that they finally had their own home (he just bought a house). The next night, he texted me a total a 20 times wanting to talk and just chatting. I wasn’t sure how to handle that. I haven’t been rude to him, but I haven’t wanted to engage as friends either.

He told me about dating someone and it didn’t work out and that he doesn’t want to date any more..ding ding ding. He needs a friend. It’s tough because I choose to see a lot of good in him, but he continues to do and say things (I may have him blocked on FB, but I still hear when he say awful things) that I just wouldn’t want a friend to say Or maybe I said that wrong…I wouldn’t hand out with someone as callous. He is critical and cruel to other people, and I just don’t need it.

The other day he said to a friend of mine that she talks about her illness all the time and that just hit home with me. First of all, I think my friend has been very private about the details of what she’s going through. If he does know the details, she certainly hasn’t discussed it over and over with him, and that’s just what he’d do with me. It just reaffirmed why we aren’t friends.

He thought this blog would be a source of negativity for me, and it’s been anything but. Sure, I can freely vent, but I’ve also connected with and reached so many people struggling with invisible illnesses. It’s been a good thing.

Anyway, I’m explaining all that because for a moment it was nice to catch up with him, and that moment faded quickly. He actually told me he was upset that I blocked him. Um…hello! He said “two wrongs don’t make a right.” That might be true, but taking that control away from him was the right thing for me to do.

Ok, that’s long enough for one blog. Enjoy your day and I’m sorry about any typos. I don’t like this keyboard.

 

 

 

Was This a Vacation?

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First, let me start by saying this is going to be a long blog, better grab a cup of coffee. I’m going to recap the good, the bad, and the seriously ugly moments of my Disney vacation. As you know, I was concerned about how I was going to do at Disney now that I have rheumatoid arthritis and fibromyalgia. Autoimmune diseases don’t take vacation breaks, and Disney World isn’t exactly a relaxing vacation.

I knew I wasn’t going to be able to keep up the pace that I did three years ago, but I was going to try. And try I did! When we arrived it was a gorgeous day and we got to our hotel in Disney, which was absolutely amazing. We stayed at the Grand Floridian in one of the new villas. I try not to ask how my mother-in-law was able to do it, but let’s just say it was as big as my house, maybe bigger, and it was gorgeous.

I’m kind of a simple person. We really just use our hotel to sleep so I wouldn’t spend the money on a big fancy place, but it truly was gorgeous in every way. We went to Epcot later that night and my kids were a pain in the ass. We had all been up since 3AM to get to the airport and everyone was tired and cranky. My youngest wanted nothing to do with Epcot. Then it started pouring. Torrential rain and Disney = great fun! Not to mention I was wear a paper thin, light blue blouse. Time for a pancho!

The second day we went to Magic Kingdom and that is kind of when the family drama started. I’m proud to say I was really uninvolved in any family drama during the whole trip…okay, I got flustered with kids, both my own and my nieces and nephews, but I stayed out the the adult drama.

My one sister-in-law has three-year-old twins, and I think that one of them needs to be evaluated. Working with families of children with special needs, and having studied so much about autism and early intervention, I think there is something going on. He screamed all day long. Not normal “the kid is exhausted” screaming, either. I’m talking, that he was fixated on one thing and wouldn’t let it go. The problem is that my sister-in-law’s husband was the only one disciplining him or trying to deal with the situation. She would count to three, and threat to go back to the hotel, but not once did she pick him and move him.

She also relied on my 10-year-old to help her chase him, and watch him. That got old pretty quick. Again, we had another day with a lot of rain.

By day three at Hollywood Studios, my legs and feet were not in good shape. Even using my cane, I couldn’t manage. I should have listened to my mother-in-law (first and only time that has ever been said by me) and gotten the scooter for delivery Tuesday night so I could use it Wednesday. I don’t think it was as much the walking that was killing me, but the standing in place. At one point in line, I was almost in tears, so we had a scooter delivered right to the park and it arrived around 2pm.

Any hang-ups I had about riding around in a scooter were gone. That thing was a complete godsend. I seriously couldn’t walk or stand anymore and I was only back tears trying to keep up with everyone. I admit I had a lot of fun bopping around in my scooter. It went really well, until…well, until I decided I was going to leave early to go back to the hotel and take an anti-inflammatory and get some rest for the next day.

It all seemed like a good plan. My youngest daughter always worries about not wanting to leave me alone and she said she was too tired to stay and watch the fireworks, so she and I left the park around 9:15. We found our bus right away (Hollywood Studios was the only park that we needed to take a bus to. Everything else we could just hop on the monorail.) I pulled up the the handicapped spot and waited for the next bus.

When the bus pulled up, they let the scooter on first, so the driver lowered the bus and got the ramp ready. I told her I had never done this before so she helped me line up the steering to the ramp, but in doing so, my cane hit the forward ignition lever. Oh people! My face is turning red all over again reliving the moment. The scooter jetted forward off a curb and into the bus with me on it.

That’s right. I crashed the scooter off a curb and into a bus in front of a crowd of 100 or more people. To make matters worse, I then had to ride the bus with 50 or so of the people that just watched me crash. At random moments I’d burst out laughing along our dark bus trip, and my daughter would say, “It’s okay, Mommy. Accidents happen!” I wanted to die of embarrassment. Here I thought I’d be embarrassed driving a scooter, little did I know I’d be more humiliated crashing it!

By our fourth day, I had really had enough of the family. My niece and nephew always had to be in front, they always wanted more than my kids at the store, etc. etc. The young twins were hell on wheels, screaming everywhere we went. It was to the point where, they just needed to go back to the room and give to the kids a nap. Put your kids first and stop trying to see every thing. Besides, they go to Disney every year! We did get up early that day and get on the new Seven Dwarfs Mine Train ride and that was a lot of fun.

My girls also went to the Bibbidy Bobbidy Boutique and got their hair and makeup done. They had so much fun. And my rule of giving them a certain amount of money to spend ahead of time was fantastic. Instead of asking me for everything in sight, they asked how much money they’d have left if they bought something. I was really proud of them, and they all made good choices.

At the end of day four, one of the twins licked a urinal. The other took off and my son ran after him. When he tried to lift him back over a fence, my son fell and hit his head on a cement curb. Did anyone show a reaction? Nope! By the time I got outside my son was crying and when he told me what happened, a complete stranger came up to me and told me there was a First Aid place right next door to where we were. The man also said that my son was the only one watching the two out of control boys and that the mother sat there and watched as my son tried to lift a three-year-old over the fence.

So, I went a into Mamabear mode. I drove (on the scooter) with my son to the first aid place and got him some ice. The nurse looked at his eyes and he appeared to be okay. I was really annoyed, though. The father of the twins was like a single dad for the whole trip, and everyone noticed it. Now, I’m not going to cast stones because half the time I’m getting the my husband to step up and step in when I need help refereeing my children. He just doesn’t pay attention. Or maybe things don’t bother him like they do a normal person, or maybe I’m not normal. Who knows? My son and my youngest daughter can be tough. My middle daughter, in general is an easy kid. She has her moments, but out of my three, she’s the most easy going and doesn’t do things just to annoy people.

By Thursday, I just wanted some time all alone, but I didn’t end up getting that alone time. At the end of the night when my middle daughter hadn’t spent her money and since we were leaving the next day, I took her back into the park alone to shop. Even she mentioned it was nice to be alone.

Given that I pushed myself too hard, I had a full on RA flare….or maybe it’s a fibro flare? I’m not sure how you even tell when you have multiple autoimmune issues? Can anyone answer that question? I’ve been running a low grade fever since Thursday and my voice is almost totally gone. Laryngitis just seems like such an odd symptom to get with a flare, but I realized that this isn’t the first time. It just hit me that I’ve been getting laryngitis quite a bit lately (not nearly this bad) but it happens when my hip and other joints are really achy.

I suppose I need to add that to the list of things I need to ask my rheumatologist. We arrived home late last night and by then I felt like I had been hit with a truck. I was coughing, a little stuffy, fever, achy, and I had an ocular migraine with no pain. That was new for me. I get ocular migraines, but they usually are the start of my regular migraines or accompany my migraines. I’ve never have the ocular symptoms with the pain, but it did cause me to be nauseous enough to throw up. What I’m trying to say is yesterday sucked.

I’ve left my bed about three times today. While my joints aren’t nearly as sore, my feet and knees are still a bit swollen, and I just feel that autoimmune exhaustion. The type of exhaustion that you just can’t really describe to people who aren’t living with autoimmune diseases. It’s not tired, it’s not even exhausted. It’s so much beyond that.

Let’s just say my next vacation needs to be more relaxing, less rushing, and no extra family members. I’m amazed to say I got along terrifically with my mother-in-law. Perhaps it was that she was desperately trying to stay out of all the arguing going on between my sister-in-law and her husband. Whatever the reason, I can at least say, there was no drama between us on the trip, which reduced the need for xanax quite a bit.

I’m so happy to be home and back with my pets. I just need a few more days to recover.

It’s a Two Xanax Kind of Night

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I’m having a panic attack. It could be a multitude of things that set it off, but it’s been bad for the last hour so I just took Xanax number two (totaling 1mg) and hopefully I’ll relax sometime soon. For the most part today was uneventful. I was able to thoroughly clean my kitchen, even getting down on my hands and knees to clean the floor (it was pretty gross down there).

My son had a baseball game tonight, and if you’ve been reading my blog for a while, you know how I dread those. I try and support anything and everything my kids do, but lately baseball has been nothing but a downer and causing stress for my son (and for me). He hasn’t had one hit in this travel league. I will add in there that for the most part he gets walked. The pitchers have trouble adjusting pitches to his size in our batting order.  We have our tallest player hitting right before him, and my son is the smallest kid on the team. I’m not saying he hasn’t struck out, too–oh he has–but, more often than not, he gets on base with a walk.

As a mom, I’m happy he’s not out. As a kid, the poor guy just wants to hit the damn ball. He had some really great hits during our Park & Rec season and his confidence was up, but he hasn’t had a hit in this travel season and he’s beating himself up. So I see him walking up to bat. There are two outs, and of course, as any good mother does, I cringe and begin praying.

The pitch is right to him and I’m see him swing. Much to my surprise (and everyone else’s) he hits the ball and starts running. Now I’m praying that he makes it to first base. In the meantime two other kids score runs as my son runs in what seems like slow motion toward first base. He gets there just as the first baseman gets the ball, but luckily the kid dropped it. As I’m thanking God for the kid’s error, I see my son’s coach start yelling at him for not running straight through the base. He hesitated when he saw the kid had the ball. The kid hasn’t had one hit all season. You can’t let him have one freakin moment?

I sat there pissed off, but they played long enough in that inning for my son to score, so I was happy and he looked happy. They were winning 13-3 when he was up again, and as luck would have it, lightning struck and they had to end the game. When we got home (we had taken separate cars) I congratulated him on the hit and he said, “It wasn’t…” oh crap I don’t remember what kind of hit he said it wasn’t. I’m not a baseball person. In other words, it wasn’t a good enough hit. It wasn’t a hard enough hit. He waited for this moment, and it wasn’t good enough. I hate his coach tonight.

Then I felt stressed because my cousin sent me a Facebook message asking why I didn’t bring the kids over to see her puppy as we had talked about prior to our fight when she said I betrayed her at cut me out of her life. I thought about my response for a good 40 minutes and I think that’s what caused the panic. I hate drama. I wrote back that she should re-read her instant messages from the other night that decide whether or not she’d feel welcome. Then I mentioned that I did not have time to discuss it further. She wrote back that she was sorry.

DRAMA!!! Anyway, we’ve been having these storms every single night and I really believe they are messing with my RA and fibro. Tonight I am fighting a migraine, and I am still dealing with the intense pain in my hip and low back. I also have a lot of tightness through my neck. I took some Alleve, but it didn’t seem to do much of anything. When I’m finished with tonight’s blog, I’m going to get my ice packs and turn off all the lights to hopefully get some sleep.

I’m not sure why but my insomnia has been really bad this week. I haven’t fallen asleep before 2:00AM in the past 4 nights. Last night I was up playing online Yahtzee (Dice with Friends) with random people at 3:00AM. You know you’re really bored when you’re trying to get people to play Yahtzee with you in the middle of the night.

And my random outburst of the night: What is up with so many people leaving their babies in cars? Yesterday another child died in a hot car and this time it was only two towns over from me. The father worked all day and didn’t realize he forgot to drop his son off at daycare. Now, let me first say that people who live in glass houses should never throw stones. When that first case came out a few weeks ago, I was so upset and I tried to put myself in that father’s shoes. Maybe he didn’t usually drop the child at daycare? Maybe the child was sound asleep and not making noise? Maybe the father was so stressed with things he was frazzled and now would spend the rest of his life paying for this horrific mistake?

Then the reports came out that the dad was researching how long it would take for a dog to die in a hot car, and how long it would take for a child to die in a hot car. Then there were reports that he was sexting while the poor baby was in the hot car. The very man that I was doing my best to try and show a shred of compassion for, even in all his stupidity, was a horrid man. So now I’m jaded. I’m asking how this father in Ridgefield, CT worked a full work day and didn’t once think of his son. Not once did his mind wander to what his son might be doing at daycare that day.

How? How does a parent not think of their child all day? How does that happen? Why does someone need to leave a shoe in the back seat of their car to remind them that their child is there? I talked to my kids in the car. I’m a stressed, frazzled, forgetful mom. I forget appointments, paperwork, dinner. I never forget my kids. All I’m saying is I don’t understand. I now find myself looking in every car in every parking lot. Why is this happening so often? I don’t get it.

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.

Stand Back…I’m Annoyed

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I could start with the autoimmune overview, but today I’m going to start with friend/family drama that’s on my mind. I actually started this post last night, but my Ambien got the better of me, and I ended somewhere in the middle. With a little revision and a necessary ending, I used it as today’s post. I might have mentioned my friend, I’m not even sure, but for anonymity we’ll call her Lilly. Lilly was in a bad place dating a loser and wanting to move her kids to Florida with him. Her mom put a stop to that and had her move with her in order to get her finances in order to save for a home for her two small children. Makes sense, right? I thought so.

She’s been there several months and her mom made her find a home for her cats. Here’s where I came into the picture. I couldn’t rake on three more cats, but I asked my cousin to take them in, and she agreed to take them for the six month period. So all was going along swimmingly, until Lilly met another loser online. Allow me to list the red flags:

  1. Father of 9 children by three different mothers
  2. He has three separate Facebook aliases with slightly different names
  3. His main account lists him as married
  4. He’s still living with his ex
  5. He has done jail time for dealing drugs
  6. He is currently unemployed, but does work for cash doing “odd and ends”–(I’ve chalked that up to selling drugs, but perhaps I’m judgmental)

I could go on with a few more, but you get the idea, and most people would run after #1 and #5. Nope! Not her! She’s in love. He won’t meet her friends and hasn’t met her family, but at a party over the weekend at my cousin’s house, she told someone there that he deals drugs and that she was moving him in with her and the kids when she gets an apartment. Now ordinarily, I don’t get in people’s business. I tried to talk to this girl with the last loser, and I know her well enough to understand that she won’t listen, but what made me talk to her last night was that there are kids involved.

She’s not thinking about what if this guy is selling drugs (she says he’d never do that again and risk more jail time) and she gets arrested with him for it happening under her roof? What if someone gets some bad drugs and comes to her house with a gun? What if someone doesn’t have money and wants drugs bad enough to rob them? The possibilities are endless and I’m a worrier.  So, I tried to talk to her. It didn’t go well. Actually, it went a bit worse than I thought.

I knew she wasn’t going to change her mind on the guy, but I was hoping to get her to think about her kids and the dangerous situations she would be putting them in. Instead, she jumped into another online conversation with my cousin berating her for telling me anything about the boyfriend that she had learned over the weekend. So now, my cousin feels “betrayed” by me, and I really just reached a point with Lilly where I had enough. I ended the conversation saying I don’t need the drama, and I don’t want to hear another word about the boyfriend–good or bad. I’m also not going to be around to pick up the pieces this time (okay, I said that, but who am I kidding, I rarely ever turn my back on someone in need or distress). I uninvited her son over because she cause the rift with my cousin and plainly said I was done. I told her to stop giving my cousin fake deadlines on getting her damn cats out of there, and keep her word because I was tired of explaining for her and then I just stopped responding.

In 25 years, I have never been so angry at her. I wouldn’t call her a close friend or a best friend. I care about her and only wish her well, but like everything else in my life, I need to eliminate stress. I can’t save the world, and I can’t help someone who isn’t helping herself. She needs therapy, and I said that in the kindest way possible. I told her that I thought I had more respect for her than she did for herself, and that was a problem. Her biggest fear at 42 years old was that I was going to call her mother and tell her all the things I know about the boyfriend. Am I? Nope. Will I if the children are in jeopardy? Of course.

After doing some sleuthing, I think he’s still married to his supposed ex, and therefore I don’t see him moving in with Lilly. I think she’s a booty call for some hot sex at a hotel, and nothing more. It makes me sad, but it’s not my life.

My life involves a hip that just doesn’t want to move. I don’t know whether it’s these storms we’ve been having or what, but since last week, I’ve been having trouble walking and I’ve been in a lot of pain off and on. Tonight is the first night I haven’t needed some kind of pain medicine in quite a few nights, and that’s rare for me. When my hip gets this locked up, it throws off my whole lower back and makes it difficult to get up and out of a chair or the sitting position and start walking. Needless to say, I’m walking like a 90-year-old woman after sitting for a long period of time because I’m so stiff.

It’s making me very  nervous about my trip to Disney next week. I’m not sure how I’m going to do. Say a prayer that I can keep up with my family.

 

Is It the Storms or an RA Flare?

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Does your rheumatoid arthritis get worse when there are storms coming? We’ve been having a heatwave and both last night and tonight we had these terrible thunderstorms with crazy lightning and high winds. Tonight’s storm, I believe was what we are getting of storm Arthur in this area. Or, maybe that’s tomorrow. I can’t keep up. It’s supposed to rain and storm all day again tomorrow as well.

I’m not sure whether this is adding to or causing the extreme amount of pain I’m in. As I mentioned the other night, I took a pill for pain, and I’m in the same boat again tonight. Actually, I’m worse. The pain medicine isn’t even touching what I’m feeling. It’s like my right hip has seized up and I have no range of motion at all through the joint. It’s causing pain both in my lower back, my left hip (which is trying to compensate), and also my whole right leg. Let’s take a moment to look at the positives: I don’t have a migraine during the storm. My hands and fingers aren’t swollen or in pain, and I still have my sense of humor.

At the moment, though the negative is really a pain in the ass…literally. I’m not sure if this is a the start of a full blown arthritis flare or if it’s the result of me overdoing it in combination with the storms going on. Obviously, I’m hoping for the latter, but I don’t have time for a flare.

Today was another day of rushing around. I taught my Pilates class this morning with the help of my youngest daughter, who is an absolute trip. Not only did she re-name most of the exercises we were doing, she also asked if she could teach something–I’ll admit I was a little panicked as to what that was going to be, but she taught a stretch she learned in gym. She was absolutely hysterical and had my whole class cracking up this morning. The problem is that she thinks she’s going to be my co-teacher for the rest of the summer now. It’s funny. I received three emails today from ladies that take my class on how much fun it was to have her there, but my class is also a break from the kids. Let’s just say she’ll be back, but not every class. She really is such a funny kid. I love her way of looking at things. She’s such a positive, happy little soul.

If I can say anything I’ve done right, it’s that all three of my kids are sensitive when they see someone else sad or hurting. They read people well (okay, maybe they miss the cues when I’m getting fed up with their silliness). They do seem to have that ability to know when a person needs comforting or encouragement, and they are great at offering it.

My older daughter had her voice lesson today and learned three new songs. One of the songs she loved so much that she worked on it for hours today. Despite having told her voice teacher today that she’s still not ready to do a solo in the fall concert, she came up to me around 5pm and announced that she would be singing that song by herself in the concert and in order to work through her fear, she wanted to sing the song several times in front of smaller groups of family. After I picked my jaw up off the floor, I told her I thought that was a wonderful idea. In all honesty, this song from Les Mis is the best song I’ve heard her do. I knew right away when she started singing that she was going to love it, but something about it clicked with her.

Around 6pm she wanted to go to my parents house (they live up the road) and sing it for them, so we did. Usually, I’m not one to drop everything while making dinner when one of my kids wants to do something, but you really have to understand how huge this is for my daughter. I know I’ve mentioned before that she is painfully shy. She has no problem being silly with her friends and family, but she didn’t talk through most of kindergarten unless it was to answer a question from the teacher, or to one or two girls in the class. She’s growing so much, and I need to encourage it.

So where am I going with this? My son…who was a complete pain in the butt today because his father didn’t give him his ADD medicine (I won’t even start that rant today) sat don’t and listened to his sister sing. He didn’t say too much at the time and then went about playing, but an hour or so later I heard him tell her that she was a really good singer and that he knew she was going to be just as great as the teenagers that were in the concert the other day. Proud Mommy moment.

It’s summer. My kids have been annoying the crap out of each other to the point that I brought all three of them into my son’s therapy session to address how they treat each other. They had an assignment this week to make the time to ask each other to play more. This made my son’s comment even more special. His “assignment” was about asking one another to play games together (they were all upset with each other that no one ever wants to play and they were all mad, blah blah blah). Anyway, I knew his comment came from the heart. He always says the nicest things to me, but doesn’t always go out of his way to compliment his sisters, so I know that one sentence meant the world to my daughter.

And now we’ve reached the holiday weekend. We did have parties tomorrow and Saturday, but due to the weather the party that was scheduled for tomorrow rescheduled to Saturday. I am kind of happy about it since this gives me a while day to focus on organizing my house. Does it sound fun? No way! But I have friends staying here to watch my pets and my house while we’re on vacation. I’d at least like to pretend I’m organized and neat. Here’s to hoping I feel well enough to get a lot done.

I hope you all have a pain free Independence Day!

 

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