Explaining Things to Kids…

63396ed3a1ae4fb1579fbec9495fdefd

I didn’t expect to have a heart to heart with my youngest daughter tonight. Actually, all I really wanted to do was come home and go to bed. Yesterday was my birthday and somewhere around 3pm my headache went from bad to horrific. Since my new insurance decided they weren’t going to cover the only medication that has ever worked for me (Maxalt/rizatriptan) I was forced to try a new medicine.

As any migraine sufferer knows, once you find something that works, the last thing in the world you want to do is try anything else so this came as quite a blow. But, here I was about to try my new medicine. At first I didn’t think it was doing much, but we went out for sandwiches about 40 minutes later before bringing the kids all over God’s creation for their activities and I thought I was doing okay. Then I got in the car and it all went to hell from there.

I got clammy and nauseous and had a plastic bag ready in case I needed to throw up. I laid in the car while my daughter was at gymnastics, just trying not to puke. I managed to keep everything down until we got home and then there was just no stopping it. I felt awful. The pain from my headache seemed to subside, but I was nauseous and vomiting terribly.

Fast forward to today, which I spent in bed because a night of puking does wonders for a person with an autoimmune disease. I was shot and all I could do was rest. We had told the kids that we’d go to dinner, though, since we really didn’t get to celebrate the night before.

Let me start by saying my kids need to work on their table manners. They drove me nuts at dinner. On the way home my daughters driven the car with my and my youngest loves to hear stories from when she was a baby and when all of them were little. She asked who was the first person to hold her and I said that she was my only baby that the doctor immediately handed to me without the nurses taking to weigh and clean off, etc.

In hindsight, this is probably why she was my best breastfeeder because she started from right away. My daughter asked if it was the same for the other two kids and I explained that no, daddy held them and then the nurse took them to weigh and do a screening right there in front of us and then I got to hold them.

She asked why she was different and I guess I thought we’d been through it before and it shouldn’t be anything new. I don’t lie to my kids so I explained that my doctor knew how worried I was about her because her legs and feet were very twisted and we didn’t know if she’d walk or the extent of what was wrong.

I didn’t tell her I was afraid to look at her, but I was. I was petrified to see how bad it was, but I have the most wonderful doctor who had been with me through several miscarriages and three hellish pregnancies. She knew me. She knew I was afraid to see her, so she didn’t even let the nurse touch her. She handed her to me as she was, a little bloody and messy, but so so beautiful. I told my daughter that as soon as I saw her I wouldn’t let anyone else hold her and didn’t want to let her go.

I looked at her and she had tears in her eyes as she asked why her legs weren’t normal. While I don’t lie to my kids, I also don’t tell them things they don’t need to know at 9 years old. She doesn’t need to know that she had a twin that died and that she was crushed in utero. How would that help her? That would only leave her with questions and sadness. I explained that the way she was positioned in my tummy left her very cramped and her legs didn’t have room.

I know she had seem pictures of herself in casts. Maybe it was so long ago that she had forgotten but she had casts from her toes to her upper thigh from 3 days old to 6 weeks, that were changed weekly, each time adjusting her feet to turn a bit more.

I said to her as a mommy I was scared. I didn’t know that she’d grow up to be able to do all the wonderful things she can do now. She’s my kid that never stops moving. Currently her latest obsession is gymnastics and it’s all she wants to do and talk about. For the kid who our 20 week ultrasound we were told “many people years ago would have aborted for this because it often goes along with neurological issues” to my funny, crazy, spitfire who is always running, jumping and dancing…it’s been an interesting road.

I was sad, though, that she didn’t remember or that it felt like she didn’t know this. I have never hid anything, but at 9, it’s just not a huge part of our life anymore. She still sees the orthopedic doctor every so often because she has hyper mobility and they keep telling me as she gains muscle that will help (so far she’s still able to bend like a pretzel).

It just broke my heart to see tears in her eyes that she was born perfect. First, no one is perfect and though she knows that, she didn’t get that there was something really wrong. It led to a long talk about my relationship with her as a baby and how I kind of became overprotective and a bit of a baby-hog. I was so convinced she needed to be protected (don’t even ask me for what, looking back I’m sure I had some kind of postpartum depression) that I just wanted to hold her and love her.

My other two kids were amazing with her. They loved her from day one and wanted to help. I was so blessed because I didn’t have the whole sibling rivalry on top of everything else. In fact, they mostly fought over who was going to help get her a diaper or hold her, etc.

We are very lucky that my daughter is okay, though I get very stressed for each orthopedic appointment that they will tell me she’s going to need some kind of surgery. Our next appointment is in June and we’ll cross that bridge when we come to it.

Even though I wanted to go to bed, my conversation with my daughter was so important because I know she went to bed knowing how much she was wanted and loved and that from the very moment I saw her, I loved her with all my heart and never wanted to let her go. It doesn’t hurt that she also feels a little special that she’s the only baby the nurse didn’t insist on weighing, etc. before handing them to me. That bonding moment is something I’ll never forget.

I miss having babies. My kids send my over the edge on a daily basis, but there aren’t even words to describe the intense love I have for them. They are my everything. They are what I’m most proud of; what I’d do anything for.

So not really an autoimmune blog tonight, but this situation really hit me hard. Someday I know I need to tell her she had a twin…mostly because her siblings know and I don’t want her to hear it from them, but I worry that she’ll start feeling like a part of her is missing 😦

These things keep me up at night.

Aside from still being nauseous, my joints are not the best today, but still not horrid. It’s like they are just saying…hello, we just want to remind you we’re here and we could start casing pain at any given moment. I know. I know. I’m taking it easy!

 

** Disclaimer: the pic above is not my daughter, but another baby that needed the same Ponseti Method of casting. My daughter’s legs were a tiny bit more severe in terms of the beginning stage, BUT…they were deemed not to be what is considered “clubbed feet” which is what can often go along with neurological issues. Hers were positional based on being crushed be her twin in utero. The pic was just to give an idea because it’s hard to describe.

 

 

 

 

Advertisements

It’s Friday the 13th

10997466_10206201745343969_2664699678981971095_o

I should have known never to plan a birthday sleepover on Friday the 13th. Let’s just say it didn’t go well. I took 6 ten-year-olds and my younger daughter to see Cinderella in the IMAX theater. About halfway through, my daughter told me she didn’t feel well. Then she threw up on the way to the bathroom.

She didn’t want me to tell her friends until the movie was over, but in the meantime I was texting all the moms that the sleepover needed to be canceled. My poor daughter. She was crying and so worried her friends would be upset, but she has some super sweet friends. I’m praying she’s not up all night throwing up. She’s been asleep since minutes after we got home.

It’s been a long time since I’ve written a blog, and truth be told, I’ve been a bit depressed. I set my sights on getting a puppy and that took over my life for about two weeks. Adopting a rescue dog is no joke! It took over a week for us to get approved for a dog…well, the dog I wanted. The local rescues approved us quickly but they didn’t have what I was looking for.

I wanted a fluffy German Shepherd mix. I applied for a puppy in a Texas German Shepherd rescue. His pictures weren’t great, but there was just something about him. I felt like he was the one. We got the approval for him over a week after we applied. They called references, our vet, did a criminal background check.

Anyway on February 28th we found out that we were approved to adopt the puppy (pictured above) who has named Benson at the rescue. We spent the next three nights in family meetings discussing his name. No one could agree on anything. All our pets are named after foods so we wanted to keep that theme.

The kids came up with Root beer, Colby (cheese), Chip, and I liked Schnitzel. Schnitzel was immediately shot down. After days of negotiations I felt like we needed to find a new choice and I was driving by a Dunkin Donuts (if you don’t live in the northeast, it’s a huge donut and coffee chain). It hit me…Dunkin is a great name and it’s still a donut!

So they all agreed and we hoped to get him by the middle of the month. Because he had to be neutered we needs to wait a week for the transport to be scheduled. Then they said it would be March 18th. Ok, I could work with that. Then they emailed that the transport on the 18th was canceled and I lost it. I don’t want to miss the puppy stage.

Long story short, he is arriving in CT on March 28th. I wasn’t thrilled, but I can’t do anything to change it. The vet he saw in Texas pushed back his age three weeks making him ineligible for transport. I certainly don’t want to put him in a situation to get sick, but the waiting is killing me.

I’ve second guessed getting him about 100 times. I want a puppy, but I’ve never gotten a dog online. You don’t really know what he looks like or anything. I mean he looks cute in the picture, but what if he’s not what I was dreaming of?

I think focusing on the puppy has taken the true focus off what’s been bothering me. I know I’ve mentioned this before but I’m turning 43, the age that my mom was when she died. As it gets closer to March 30th, I’m falling further into a funk. It’s just a very weird feeling. I know the 30th will not be an easy day, but the fact that we will have Dunkin will help me focus on the positive.

My rheumatoid arthritis has been tough. This winter has been so cold and it’s like once my hands are that cold, nothing warms them up. I’ve woke up the last few mornings with swollen hands and what looks like a lipstick mark in different spots. The first day I saw it I tried to rub it off because it truly looks like a lipstick stain. It didn’t come off. Then the next day it was in a different spot. Today’s was large enough that it concerned my husband. He took a picture of it to show my doctor.

I am thoroughly disgusted with the way I look. I think that’s definitely adding to the depression. I look hideous and I don’t fit in anything. I am getting back to my Ideal Shape products and did well today. I definitely like the chocolate shakes better than the vanilla, which surprises me. Usually I like a vanilla shake with added fruit. This one smells like Play Dough to me, HAHA!

I am also forcing myself to exercise every day. It’s tough on the high pain days, and on those days I’ll just do abs or something small. If my hands are swollen, holding weights isn’t an option.

Once the puppy comes, I will be walking more…and hopefully by then it will be warmer.

I’ve also had some pretty horrific migraines in the past three weeks. I’m not sure what that’s about, but it has been awful. I use my prescription migraine medicine, Maxalt, so sparingly because even the generic is darn expensive (with insurance). I had to take three in the past three weeks. Usually I can fight it off with Excedrin, but these weren’t going away.

Anyway, I know that my next two weeks will be emotional and hectic. Right now my main hope is that my daughter doesn’t end up puking all night. She’s been sound asleep for a while. Praying she sleeps it off. Gosh, it’s awful when your kids are sick.

I’ll try and be better about keeping the blog up-to-date. I feel like it’s therapy for me.

Just Surviving

birthday

I feel like it’s an accomplishment that I survived today. We had a gymnastics birthday party for my daughter with 12 kids (other than mine) and it was hectic. I’m not sure what was funnier to me, the girl that wanted me to buy her a gymnastics outfit instead of giving her a gift bag, or that my mother-in-law said one inappropriate thing after another.

My neighbor was talking about a situation her older daughter is having with a co-worker and that she tried to talk to her boss about it, but nothing has been done. My mother-in-law blurted out, “Oh is he gay?”

I’m not sure how she draws conclusions. My brother-in-law and I had to walk away because we were laughing so hard. I used to spend time trying to explain to her that her comments could be taken as rude, insensitive, and inappropriate, but I gave up on that about 8 years ago. She isn’t going to change.

Tonight I’m fighting a headache. I’ve been able to stay on top of the pain, so it’s not bad, but I realized that I skipped taking my birth control pill last night and that always triggers a migraine for me. As soon as I realized it, I took the pill this afternoon, so I’m hoping between that and some over the counter meds that I don’t wake up with a bad headache tomorrow.

It’s bad enough that the temperature is going to be -14 tomorrow morning. I don’t need a migraine on top of dealing with that. The front of my thighs are hurting me tonight; one more than the other. I’m not sure what that’s about. Of course, my mind jumped to the fact that I work with the computer on my lap all day and it’s probably a tumor.

Tomorrow is also a school holiday and then we have a snow storm coming on Tuesday. At this rate, the kids will be in school until July.

So I need to get back on the diet wagon tomorrow. I am thoroughly disgusted with myself. I allowed myself to fail…again. Tomorrow begins a new week and I’m going to give it my all. I’m going to ignore the fact that I made banana bread today and that I’m likely the only one who will eat it. I need to get serious before it starts to get warm.

I was good about exercising last week, so I plan to keep that up. I didn’t do anything today and did plan to, but I got sucked into watching the Saturday Night Live Anniversary Special. It was great watching some of those older sketches with Phil Hartman, Chris Farley, Will Ferrell, etc.

I’ll get back to my elliptical that I hate tomorrow. It’s good for me, and I need to work up to a longer amount of time. We’ll see. I was thinking of pulling out my step and doing an old step class. I miss it. It was my favorite class to teach.

I need to get back to doing it a few times a week. It will break up the monotony to spending 30 minutes on the elliptical. It’s now 12:30 and I’m still wide awake. I’m going to have to take a half an Ambien to get some rest.

If you’re on the upper East Coast, try to stay warm.

I Feel a Migraine Coming

headache

Those of you who get migraines know exactly what it means to feel one coming. While I know everyone is different, for me it starts with trails of light as I move my eyes. I don’t have the pain at this point, but I know it’s coming.

While we’ve had a little reprieve from the freezing cold weekend, we are getting a little bit of snow tonight and a lot more is coming our way on Saturday. While I can definitely relate my migraines to hormonal changes (period week is hell), I find that the pressure with storms really affects me.

The more I read about and talk to people with fibromyalgia, migraines are a common thread for many of us. While my fibro and rheumatoid arthritis cause me a lot of pain, nothing compares to a migraine. When it’s bad, I can’t function at all. I’m useless as a mom, editor, parent advocate, etc. Just plain useless.

I’m hoping to head this migraine off by taking some Excedrin. I don’t want to pull out the Maxalt just yet. I’m like a crazy person. I feel like I have to hoard those for horrific migraine days. I didn’t take Melatonin earlier tonight because I thought I’d be exhausted. I was up late editing last night, and I worked a full day at the office today. That means no time for a quick nap or a cuddle with my cats.

One new thing I’ve been trying is essential oils. I know there are a lot of great companies out there, but since I have no idea what I need or want, I bought a sample pack on Amazon. No idea even what brand they are, but I love them. I use the peppermint when I have a headache coming on, lemongrass just makes me feel happy, lavender to help sleep, and then there are a few others. I only bring this up because of the migraine issue. If you haven’t tried peppermint oil, it’s worth a shot.

While it doesn’t take the place of medication (sorry, I wish I could say it did), I do feel a noticeable difference when I put it on my temples. A friend just told me about a certain blend that is good for fibro. I’ll report back on that if I buy it. It’s from doTerra, which is supposed to have wonderful products, but they are pricey.

Why I’m a Crab Today

I think I’m crabby because even though it wasn’t a bad day, I just don’t feel great. I hate to complain when I know I have days where my pain level is far worse, but it’s exhausting just not feeling great. I can’t remember the last time I woke up and felt refreshed by a good night’s sleep. Heck, even on a great Ambien night of sleep I still wake up exhausted.

Maybe BLAH is a better word. I’m blah because I haven’t had a day without a freakin ache in so long. I’ve been under my heated blanket since 5:30pm and my fingers are still like icicles (thanks Raynaud’s). So there, that’s tonight’s post. I’m blah and I hate it.

Tomorrow begin my weight loss journey with Ideal Shape. I don’t want to bore anyone, but I feel like if I hold myself accountable on the blog, maybe I won’t eat a bag of cookies or chocolates. I’m actually excited even though I technically started smaller portions and cleaner eating on Monday (we are going to ignore the Pepperidge Farm cookies I scarfed down when I got home from work).

Worst case scenario, tomorrow night I’ll be reporting back that the shakes were horrid. Best case, I’ll like them and feel full between the shakes, snacks, and drinking way more water than usual. They want you to take your weight and divide it in half, and that is the amount of water you should be drinking each day.

Hopefully, I can do that! We’ll see. I just want this extra weight off in time for summer.

Oh and to finish up, I was invited by the women who work at the pediatrician’s office to see 50 Shades of Grey. What the hell was I thinking when I said yes. I didn’t even make it a quarter of the way through the book…they lost me at “butt plug” and the whole contract thing. I know I said I was making an effort to be more social, and they are all super nice, but dear lord…I wasn’t planning on seeing that one. Should be interesting. I’m either going to cancel for fear of not knowing anyone, or pop a half a Xanax and force myself to go!

Before I admit that the half an Ambien is kicking in, I just wanted to say hello and thank you for all the new blog followers. Thank you Goddess Simmons Drew for sharing the blog on your FB group. Connecting with people that understand what it’s like to have an autoimmune disease and the crazy roller coaster it is, has made a world of difference to me. We’re not alone.

So Sick Today

index

As I mentioned in my last blog, I was starting Metformin this week. I thought I was doing okay with it. I certainly didn’t have the “bathroom issues” that were commonly mentioned. I just felt a bit nauseous, but nothing I couldn’t handle. Until Friday. I had dinner, and my foot was again in hideous pain so I broke down and took a pain pill. Well the combination of the two sent me over the edge and I began throwing up violently around 1:00AM.

It was awful and I ended up not being able to sleep until close to 4:00AM. I was hesitant to eat anything this morning, but I ate a rice cake with peanut butter. I figured that was bland enough and I held it down okay. We went to my daughter’s singing lesson and then to Nutcracker practice and somewhere during the ride I lost vision in my left eye and I was in a full-blown migraine feeling like I was going to throw up.

I decided to go through the drive through and get a soda to try and calm my stomach. It was so bad that I asked the lady for a plastic bag just in case I couldn’t make it home. I ended up getting home safely and put ice on the back of my neck for an hour before having to go back.

Again, I had an hour or so of feeling okay, and then it was back and I was trying to get back home before tossing my cookies. I feel like I have very low blood sugar; that disoriented, cold sweat, nausea, etc. I slept for two hours and felt a lot better but needless to say, I’m not taking that medicine tonight. I’m going to take another day off tomorrow and try and start it at half the dose on Monday.

When I asked on the PCOS board, many people said they felt like that for a month or two. A MONTH OR TWO? There’s no way in hell I could be like this for a month or two. My son has his football conference championship tomorrow, and I need to be there. I can’t be puking at home.

I was forced to eat a slice of pizza by my family and surprisingly, I think that helped with the queasiness from the low blood sugar. I’m just hitting a wall. I want to lose weight and feel better, but I don’t know if this is the way to do it. I don’t want to be nauseous and puking all the time. Metformin may very well help with my PCOS, but given the fact that I have decided to go back on the plauqenil this week, after I see my rheumatologist, I don’t want to be on both. I’ll tell him everything and see what he says.

My foot has been in that terrible pain either once a twice a day since Halloween. Someone online scared me by saying they felt that kind of pain when their hand deformity started. It felt like the hand was clamped in a position, and that’s exactly what my toes feel like.

Last night really scared me. I’m not ashamed to say I was on the couch crying for my mom. Sometimes you just need your mom when you’re that sick. My mom can’t be here because she passed away at 43, so then I became irrational and started thinking I was beginning to get deformed feet, I was so sick and there was no end in sight, and I need someone to make sure my children are raised the way I want them to be if something happens to me.

Everything was hitting me at once, and add the puking to the mix and I honestly felt scared that something bad was happening. I spent today trying to imagine what my month would be like if I continue with the current meds. I don’t know what to do. I suppose I should call the endocrinologist and ask questions. At the moment, my focus is on being at my son’s football game tomorrow morning. That’s the only focus for now. My sister-in-law is taking the girls to dance for me.

I know my mother-in-law has big plans to go shopping for a new kitchen table for us, which is just so nice, but I don’t want to see her spend the money that she wants to spend. I have two ways to look at it. Her son doesn’t make a lot of money in their family business and we are living paycheck to paycheck. I keep hearing how it’s going to get better…for years. I know we can’t afford to replace the table now and I also know how much she has bought for her daughters. I shouldn’t feel guilty that she wants to do something nice. Her heart is in the right place, and at least this time she’s letting me choose the set (a nice step from when she showed up with all white furniture for a home with three kids, three cats, and a big black dog).

We just found one for half the price at Raymour & Flanigan that I liked just as much. She’s concerned that the one she found at Basset was heavier and will last forever. I’m not even sure I’m going to be up for this tomorrow. Like I said, first things first, I need to make it to my son’s big game.

I’m saying my prayers now that he has a great game. His confidence is increasing now that he’s further understanding the game, but I’d love to hear the announcer call his name for a tackle. His last tackle, they just announced the kid who got tackled and I know he was so disappointed (usually they say both names). If I had one wish, other than a team win, it would be for him to have some sort of special moment. Even a small one would mean the world to him.

I’m off to try and sleep. Wish me luck!

No New News; Just New Medicine

pills

My appointment with the endocrinologist went pretty much as expected. My bloodwork all came back in the normal range. As I sat there about to cry, I made a last ditch effort using the the research I did on Metformin being helpful for PCOS, and much to my surprise he agreed to try it. I didn’t see that coming. I was ready with my arguments, but he said that he has seen Metformin help with some patients even when their bloodwork did not show an excess of androgens (male hormones).

So here I am with my new prescription and I’m on the Facebook pages for PCOS reading the horror stories of side effects. It’s mostly stomach issues…people saying they couldn’t leave the bathroom for days. Sounds like a real joy! I opted to only take one pill yesterday as people were saying it was helpful to work up the dose.

I didn’t have any side effects at all, so I figured why not try both doses today. I took the second dose with dinner around 6:30 and I feel like I’m sitting here waiting for something to happen. Fingers crossed that I don’t have issues tonight. I have enough issues already.

Today was hectic. I had a team meeting about 45 minutes away and then sat in traffic for an extra 30 minutes on the way home. I wish I had more interesting things to say today, but at the moment I’m supposed to be editing a military fiction novel and I just can’t concentrate on it. I have another novel waiting to be edited so I need to force myself to get through it.

The novel itself is well-written. I don’t have a lot of work to do in terms of the editing itself, but I’m not familiar with all the military terms or places in Vietnam, so I’m spending a lot of time looking things up. I’m having a hard time focusing at all lately. I just have so many things going on. I know I’m trying to do too many things. What mom doesn’t? But it’s difficult to keep up.

Between Halloween and standing out in the freezing cold for 2 hours on Sunday to watch my son’s football game, I’m really feeling the effects of having an autoimmune disease. My feet were so swollen after walking around in my slippers on Halloween that I couldn’t fit in my shoes on Saturday. I squeezed into them (with my usual brilliance) thinking they’d loosen up, and within about 5 minutes my feet swelled so much that I had to turn around and go back home to get other shoes.

I want to be there for every special moment with my kids, and it’s just really hard when the after effects cripple me at times. It doesn’t mean I’m ever going to stop trying, though. It’s just frustrating.

I’m also learning that just because you care about someone doesn’t mean they deserve it. I guess I’m that person that always hold on to a little bit of the good in people. There are very few people in my life that I hate, if any. I just try and make peace with things and move forward. I’m frustrated because I’ve now had someone try and come in and out of my life as one of my friends is doing now. He’s not even my friend after all the crap he’s pulled. I guess I’m just confused as to how someone can be in a serious psychotic state and then a week or so later act like nothing happened. I am chalking it up to mental illness and trying to just cut off ties.

Okay, I have to get back to my editing.

Back from My Hiatus

renee

It’s been a while since I’ve written a blog. Actually, that’s not even true. It’s been a while since I’ve published a blog. I actually began writing posts on three different nights and just felt really overwhelmed with everything that was going on. Last weekend sucked. Friday my former friend whom I’ve written about in the past, really pissed me off and it was just a night full of his drama.

I wrote explaining what happened, but every time I started writing about it, I just felt like it was a soap opera and I wanted it all to be gone. Long story short, he’s been doing a lot of drinking after losing the last love of his life, and tried to suck me into his drama first by saying he wanted to kill himself, and then next by repeating something I said and posting it on Facebook, which set in motion a whole slew of issues. He loves drama and posted something about ebola on a local town page after I mentioned a conversation that I had with a local doctor (my neighbor).

Of course, he doesn’t feel like he did anything wrong, and when I didn’t see eye to eye on that he lost it. He said all sorts of crap that prompted me just to block his emails. Then he created a new email address to continue it. I’m guessing he must have gotten some kind of notification that his emails were not going through. I worked myself up a bit because I thought I was going to run into him at Nutcracker and I didn’t even want to see him. I kept my word and brought a bag of clothes for his daughter, and my youngest daughter gave them to her.

He did send a text thanking me for the clothes, and I just said no problem. As dramatic as that was, I’m glad it all happened. That makes me sound like a crazy person, but in some ways I didn’t want to get to the point where I cut him off totally, but now it’s clear that’s the way it needs to be.

The weather has been getting colder here, and my hip and lower back have been very stiff. I don’t have my follow-up appointment with the endocrinologist until November 1st, but some of my test results (the thyroid ones) came back completely fine. I’m not sure why the other results aren’t listed, but after doing a bunch more research on PCOS, I decided to buy some supplements and see if that helps at all. I went a little crazy and bought chromium, cinnamon, B complex, and co q10. I’ve only been taking them since Monday, so I don’t have anything to report on whether or not they are working.

I’m just desperate to find something to help. I feel like if I could just figure out why I’ve gained so much weight it would really help. It’s not only killing my self-esteem, but it’s also making it harder when I do exercise. I keep reading that people with PCOS are more likely to have heart disease, etc. I need to stay off of WebMD. I just want to get to my next appointment and have a plan. My biggest fear is that all my test results will be fine and there won’t be a course or plan of action.

So far this week, I’ve managed to be a huge bum. I feel slightly guilty that I hardly left my bedroom on Monday until the kids got home from school. It’s just that my weekends are so jam packed with me shuffling kids to one activity or another. I was out in the cold Saturday night for my son’s final regular season football ball game. I already knew they made the playoffs, but it was his first evening game, and though I still don’t understand football, even I knew it was a good game.

All in all, things are status quo. I’m not in terrible pain. I’m still tired all the time, but I’ve just accepted that this is the way it’s going to be.

Now let me say a few words about Renee Zellweger. I don’t have a problem with people wanting plastic surgery. Heck, if I had loads of money to spare I’d want a nose job. I’ve always looked in the mirror and just seen my nose. It’s too big for my face, but I live with it. What I don’t understand is wanting to look like a completely different person. I would never have known that was her, if they weren’t discussing it on the news.

Truth be told, she’s not a favorite of mine. She always looked like she was going to burst into tears in photos and I can’t stand the faces she’d make on the red carpet trying to look hot. That being said, I thought she was so much prettier before the surgery. She had a soft, kind quality to her that is just totally gone now. I’m not saying she’s not still pretty. She is fine, but I don’t understand to want to change everything. When does that end? I’d guess that once you start rearranging things and fixing things you don’t like, you’d likely begin to focus on another area you don’t like. Maybe go for liposuction next or a boob job?? I don’t know.

It just doesn’t make sense to me!

 

Is It Depression or a Funk

depression

It could be a bout of depression. It could be a funk, but it also could be that I’m irritated. I have been feeling better. My wrist is a lot better than it was the other day, and my pain level is very low. All in all, health-wise, I’m doing okay. I’m just still so tired. I fell asleep on a webinar last night and then heard them call my name and ask me to do tell the group about myself. Luckily, I wasn’t so far asleep that I didn’t hear my name, but it took me a moment to snap to it and answer.

The irritation comes in because yesterday someone asked me some questions about autism. I explained that it’s a very wide spectrum and while low-functioning, non-verbal children would likely stand out in a crown, there are so many kids with Asperger’s or that are high functioning ASD that the average person might not even be able to tell. I should know better than to discuss disabilities with this person, and I’m not even sure what prompted his question, but he responded with, “Don’t you think some parents just don’t want to admit that their kids are stupid?”

First of all, I’d never call any child stupid. I think there are plenty of stupid adults. Adults know what they are doing when they make stupid choices (or at least most of them do).  Mu thought was what kind of asshole asks a question like that. I responded with, “Well, there are neurologists and neuropsychologists that diagnose autism, but it’s possible you know more than them.”

Working with families that have children with all sorts of special needs, I hear many stories. No two children are alike even with the same disability. Two of my own children have dyslexia and they learn in completed different way. My son has difficulty with comprehension, and my daughter has trouble decoding. It is technically the same disability, but they couldn’t be more different.

So that set me off. But today is a new day and I just went for my last day of bloodwork. I took the steroid last night and this morning’s test for for the cortisol level. I’m just praying that they find some answers. The next hurdle is that I have to wait until my appointment on November 4th for some answers. That just plain sucks. I think that’s what has gotten me down the most. I just want so freakin answers. It’s frustrating to have different specialists disagree on my autoimmune diagnosis, and now it seems that after taking the more cautionary route of diagnosing me, my newer rheumatologist agrees that I not only have fibromyalgia but rheumatoid arthritis.

I really had my hopes up that it was a thyroid issue because that may have even changed the fibro and RA diagnosis because one of the big symptoms with thyroid issues is muscle and joint pain. Of course I ran with that and diagnosed myself with hypothyroid. It’s dumb I know…but if you had one shred of hope that you didn’t have RA, wouldn’t you at least dream about how great that would be. It was a bit of a reality check that these autoimmune issues aren’t going anywhere forever.

There won’t be a winter where my hands don’t turn white and blueish from Raynaud’s. There won’t be a day where I don’t have more than the average ache or pain. It sucks. But right now, I need to focus on some kind of PCOS diagnosis, as I already knew I had that from my days with infertility, but I just never saw it being an issue in my life again after conceiving. It’s just one more thing to add to the list, and that one isn’t even under the umbrella of autoimmune. I take a look at myself and this, holy crap is this 42? What am I going to be like at 52 or 72?

I’ll cheer up eventually. Perhaps stopping at Starbucks on the way home for an iced green tea will make everything better. It can’t hurt!

 

 

Stupid Hands

wrist-pain

I shouldn’t say hands…it’s really only one hand that I’m calling stupid tonight. I’ve been in terrible pain through my right wrist for the past few hours, so much so that I was sitting here in tears and broke down and took something for pain. I’ve actually never taken pain medicine for my hand/wrist pain. What causes me to take a pain pill is usually hip and low back pain that just affects one whole side of my body. So for me to take medicine for a wrist/hand, it’s bad. I suppose I should admit that I’m partially to blame.

Last night my girls wanted me to sit down and watch a movie with them and I hate sitting still. I thought it would be a good time to knit while I was watching Pitch Perfect. I love my knitting. I’m not very good. I made scarves. I don’t really want to learn to knit anything crazy or difficult because I find knitting very relaxing. If I have to follow a difficult pattern or learn crazy stitches, it loses some of the fun. I have mastered quite a few really pretty patterns and I look for new ones that are within my capability, but it’s just something that I like to sit and do. I knit throughout the movie and that may be why I’m hurting so badly today. I hate to think that two hours of knitting sent me over the edge because that doesn’t bode well for my relaxing past-time.

Yesterday was rainy and cold, and I’m hoping that the weather and damp cold are factoring into my pain level. Today the weather was really beautiful; it could have been about ten degrees warmer, but the sky was a deep blue and I had an hour to sit outside with my youngest daughter while my older daughter was in a dance rehearsal. We just sat outside and talked, and enjoyed the sunshine. I don’t do that enough. Don’t get me wrong…I sit and rest as much as my body tells me to because the alternate sucks and I’ve learned that the hard way, but I don’t always sit outside. It was nice.

I had a bit of drama last night and today with my former friend. I find it even too exhausting to get into (although it would probably be a good read). I just am at the point where I think he needs professional help. I was told a very in-depth story last night that I just find too many holes in. I hate to not believe in people, but then this morning he also mentioned that his new love broke up with him. SO…I think he was at a very low point and needed a reason to be validated for feeling as low as he did.

My afternoon ended with me shutting him down as to restarting our friendship. I left things nicely. I just truly hate drama, but I can’t open my life back up to someone who contacts me when everyone else shuts him out, or uses me as a punching bag when he’s at his depressive lows. I have my own full plate. Anyone who knows me well knows this is not an easy thing for me. I have the terrible habit of listening to people’s issues and being a good sounding board. It’s not really a bad thing, but it sometimes becomes one sided and that’s not fun.

The other thing is I’m learning to really put myself more toward the front of my own line. My kids will always come first, but if I’m not okay and healthy, I can’t take care of them, so I need to also take care of me. This means cutting back on people who annoy me and not being anyone’s punching bag and accepting a simple “I’m sorry” the next day. We ALL have those moments where we say more than we should have or something comes out wrong. I am not saying I’ve never made a mistake and apologized for it. That’s not what I’m talking about. I’m talking about someone who uses your insecurities to make you feel horrible and then says they are sorry.

Anyway, I’m content with how it all went down. I wasn’t mean, but at the end of the day, I still like me and the decisions I made.

In my “spare time” I’ve been deep into my research of polycystic ovarian syndrome (PCOS). I also learned that low vitamin D (my only strange result of my last bloodwork) is also a very common symptom of PCOS. I feel like we may be on the right track, but what sucked the most is when the endocrinologist point blankly said that my RA diagnosis wasn’t going to change. I suppose I knew that, but when I was researching thyroid issues there is the symptom of joint and muscle pain, and I’d be lying if I said I wasn’t the tiniest bit hopeful. So now, I may be looking at an autoimmune disease and a hormonal one, that has a high link to heart disease and cancer.

I just want and need confirmation so I can start dealing with it. I need to know. I’m going to have my blood drawn on two separate days this week, but my next appointment isn’t until November 4th. I really want to call way before that and find out my test results. Would you do that? I mean how hard is it for the nurse to call me back after the doctor has seen the results? Why should I wait until November to start treatment if my hormones are way out of whack and if my insulin resistance is off…or if my cortisol level is off.

I never thought I’d be a fucking medical nightmare at 42. It’s depressing. My mind has so much it wants to body and my body can’t freakin keep up. I’m hoping tomorrow is better because I have to switch out bins of winter clothes and pack away the summer ones. It’s one of my least favorite things to do. I also plan to de-clutter the girls’ room, but that might go better on Tuesday when they aren’t around. We’ll see what the morning brings.

As always…thanks for reading!

Happy Children Equal Happy Mom

tumblr_lvjqp8GgkI1r5xup0o1_500

Today is the day. The day I spent waiting for the phone to ring with our Nutcracker results. The call came in at 10:50 and like any neurotic mom, I answered on the first ring, trying to sound casual. The results were in! My older daughter is a Lead Angel (a newly created role) and a Ginger Clown, and my younger daughter is a Scurry Mouse and an Angel. My younger daughter got exactly what she was hoping for. My older daughter didn’t get the roles she was hoping for, but I had a feeling she was going to be excited because I knew the main thing was she wanted to be in something other than the Battle scene this year.

She was a soldier and an angel last year, so she was so excited to be named a lead angel, even though we have know idea what a lead angel does, and the ginger clowns get to run and be silly, and I have a feeling she got that because she did a really great cartwheel as her audition trick and a lot of the ginger clowns do cartwheels. So, thankfully, there was a lot of happiness and joy in my house this afternoon!

My niece is also a Scurry Mouse and an Angel, which is, well…I guess good. The girls are happy. I just think of the Nutcracker as my thing to do with my girls. I’m bitchy that way. The in-laws always hated the Nutcracker until my niece did it. My mother-in-law fell asleep during my older daughter’s first performance. I had to tell my husband to wake her up before my daughter went on stage.

I wish I can say I kept to my workout regimen and did some cardio today, but I did teach a really tough class with a lot of lunges. I just didn’t have the energy to do cardio today. I’ll get back on it tomorrow with a long walk, and possibly attempt the hills again since my shins seemed better today. I did a lot of shin warmups and stretches.

Tonight is significantly colder than it has been the past few nights. I bought myself a new heated throw blanket, but I haven’t put it on the bed yet. I have my heating pad in my low back, and I used it on my hands this morning. I’m managing. I just feel like I can’t stand saying that. I’m managing. Is that the way you get through the day, too? I mean, it’s not that I never have a good day. I have good days, but I don’t remember the last time I had a completely pain-free day. It comes down to whether the pain is manageable or not.

I can see where people with autoimmune diseases like rheumatoid arthritis, fibromyalgia, lupus, etc. suffer from depression. It’s not easy feeling like crap day-in and day-out. I mean, I have days where I’m thinking, wow–I’m good enough to go for a long walk, but that doesn’t mean my hands aren’t hurting or my hip isn’t bothering me. It just means the pain isn’t so severe that I can’t do anything. I think that’s where most people get confused. First of all, it all goes back to the fact that people with autoimmune issues look fine, for the most part (unless I’m using my flamingo cane!). On the average day I may have a small limp, but it’s unlikely anyone would really notice.

I don’t discuss my RA, Raynaud’s or fibro 24/7. I blog here to get my autoimmune thoughts out, but I don’t discuss it all day. The real reason behind that is so few people really understand anyway. I have my Facebook support groups, and people that I know who are dealing with autoimmune issues, but other than that, people sympathize, but they don’t really get it.

I didn’t intend to have an autoimmune rant tonight, but that’s kind of what this has turned into. Sorry about that. Sometimes you just need to let it out. I think I was more let down by my own body yesterday when I wanted to jog and I could hardly walk the track. Tomorrow is a new day. I had a lot of positives today and I’m so thankful for that. Happy kids equal a very happy mom! It meant the world to see my girls so thrilled about their Nutcracker roles. Everything else was secondary.

Previous Older Entries