A Day of Ups and Downs

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If you read my post from last night, you know I was up late waiting for my eBay auction to end. I’m happy to say that I’m the proud owner of a sushi chef nutcracker (pictured above). So, my day started out on a high note.

My kids religion class was canceled this morning because the roads were very icy here in CT. People were posting on Facebook all day about accidents in town and nearby, so my plan was to stay in our jammies and watch television. My kids got a huge kick out of the Game Show Network. It was actually a really fun few hours until it got awkward when the questions on Family Feud included things like, “Name something that would be surprising for your husband to bring to bed on your honeymoon?”

Yep! When I yelled out “book” the kids all wanted to know why. I opted not to seize the moment and discuss what a man and a woman usually do in bed on their honeymoon.

My girls really wanted to go see Into the Woods this evening. I’ve been going back and forth about it because some people have said it’s too scary (they are almost 8 and almost 10). Others have said that the graphic stuff isn’t shown, so it would be fine. I don’t think they’ll pick up on the sexual things from the wolf (another reason not to prolong our Family Feud conversation), but I don’t want to pay all that money and have to leave because my youngest daughter is too scared.

When I finally got the urge to shower today, I went downstairs to grab something and water was pouring into my finished basement from two different spots. Last night we thought a bit of water was coming in from a pipe, but today it was clear that Mother Nature was to blame.

As I freaked out running back and forth to the two spots with the shop vac, I realized I wasn’t going to be able to keep that up for very long. My husband finally got home and began to build a trench leading the water from the crazy ice and rain away from the house.

Within about 30 minutes, the water slowed way down and it’s all but stopped now. It wasn’t what I planned on doing today, and it pretty much sucked. Despite sucking for the obvious reasons, add to that being on my hands and knees with the shop vac and that sent my joints into complete hell and subsequently canceled our movie plans. Actually, we also heard the roads still weren’t great, so that helped make my mind up to take the kids tomorrow. Praying that’s the right decision.

I’ve been researching weight loss plans to deal with the weight issues that having been, well, weighing me down for a while now. I need something that takes a lot of the guesswork out. I tried Take Shape for Life last year and I actually liked some of the food, but I didn’t do so well. I don’t know what to attribute my failure to. I think after the really tough first week and only losing three pounds, I was frustrated. People in the online support group were reporting 7-10lbs gone and I had a measly 3.

Anyway, I think I’m going to try another program that involves two shakes (or meal bars) per day and a healthy meal. They actually want you to eat every three hours. So what’s going to be different this time? I really wish I could answer that. The drive is there. I need to suck it up and do it. The programs I looked at included Ideal Shape, Shakeology, Isagenix (which a friend has been trying to get me to do) and 310.

Based on the ratings and the prices, I chose Ideal Shape. I’m going to give it my best shot. I hope to be able to order it on Tuesday. Up until yesterday I had my heart set on Isagenix. Two friends had great results, but it’s about $500 if I include the snack I’d need to get through the cleanse days. It also didn’t get rated as high as Ideal Shape in some categories.

Basically, the problem is me. I don’t feel that I’m eating enough to be this weight, but I’m going to give a serious two months to this program while I’m waiting for an appointment with another endocrinologist who specializes in endocrine issues other than diabetes. I tried taking the Metformin to treat the PCOS, but it made me nauseous and I didn’t have the insulin resistance that goes along with PCOS. I wanted to try something so bad, but I don’t want to be on a medication if I don’t truly need it…especially one that makes me nauseous.

This program also has some CDs to help me with self-hypnosis. Yep, I’m three shades of crazy, but I either have to be all in or not do it at all. I’m in. I want to look like myself this summer, not some fat version of me. The other thing is, losing weight has to help relieve the knee and ankle pain (I hope) from the rheumatoid arthritis. I also plan to chronicle my journey (even if it’s boring as hell) as a way to hold myself accountable.

I’ve also been going back and forth about going back on Plaquenil to deal with my arthritis pain. Also on my list to do this week would be finally going to get that blood test that my rheumatologist wanted me to get. I think it was called a Vectra blood test. It’s supposed to look deeper into the issue of RA, and once and for all have a definitive answer. Every specialist has something different to say.

Most agree that I have fibromyalgia. One thinks I have both fibro and RA. And let’s not forget the Raynaud’s. Can I just say that winter completely sucks with Raynaud’s? My fingers and toes are like painful icicles. As far as I know, though, there’s not much that can be done for it. That which does not kill us…oh whatever!

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Stressed about Football…Yep, I’m Serious

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I have way more important things to be worried about, but tonight I’m thinking about football. My son’s football game tomorrow, to be exact. This sports stuff is hell on me. I just want him to do well, and he does really well in the practices, but he gets nervous during the games. He’s playing against kids that are a lot bigger than him. The league allows kids that weigh 70lbs-105lbs, and my son is 76lbs. He’s not a big kid, so when he’s matched up with a bigger kid, he allows himself to get psyched out.

As a mom, I just want that one play. That one play where he knocks another player down, preferably the player carrying the ball, but I’m not fussy. He needs confidence, and I can’t give that to him. He needs to find it within himself. This parent stuff is tough!

My girls are also practicing for their Nutcracker audition next Friday evening. As crazy as this time of year gets with football games and Nutcracker rehearsals, I love it. My older daughter has been working one-on-one with a dance teacher to prepare for the audition. There aren’t a lot of prime roles for a nine-year-old, but she doesn’t dance with the lead studio in town (because I wouldn’t place her with someone who screams at her) and because of that she comes into the audition at a disadvantage.

The dance teacher is the daughter of a friend of mine, and she is just helping her with what to do during her 30 second spot where she can doing anything she want in front of the director. The audition is a bit intense. My younger daughter cried the first year, and left the stage because it was scary. There were like 80 girls on the stage being taught a combination and it was too much for her at age 5. She went back next year and she got the role of a mini mouse. She’s gung-ho to go back again this year, but her level of dance is that of a 7-year-old. She’s happy being a scurry mouse or an angel, and she’ll be fantastic at whatever she gets.

My older daughter really wants a part where she can do some ballet. Last year she got the role of a soldier and she cried because that was a “boy part.” I understood her sadness, but made her follow through with accepting whatever role she was offered. She was super shy about it, but she did ask the director for a second role, and she got to be an angel. Anyway, I’m babbling about Nutcracker, but it’s become a huge event for us the past few years.

It’s starting to get colder here in Connecticut, and my hip and leg have definitely started aching. My heating pad is out and being put to good use already. It’s funny, I’ve really spent the last few months dealing with exhaustion as my main symptom, with the occasional migraine. I forgot how the colder affected me. It’s not even that cold, but we had a damp rain today, and I was limping and I had pain shooting down my leg and into my foot.

I also had the neuoropathy symptoms again for the past few days in my hands and feet. At the moment, my right hand not only 6029721854_e19543daff_ohas the sharp pins and needles, it also feels burning hot.

With all the research I’ve been doing into Hashimoto’s prior to my appointment with the endocrinologist in October, I’ve been finding that most people with autoimmune diseases have more than one. I’ve love to hear if that’s true for you> It’s definitely true for me with rheumatoid arthritis, fibromyalgia, Raynaud’s disease, and possibly Hashimoto’s. I also talked to a girl who mentioned that the only real way to disagnose Hashimoto’s is through a biopsy of the thyroid. I would love any insight on this.

My rheumatologist did a blood test, but it wasn’t even all the blood tests that I saw recomended on the Hashi sites. Any feedback would be great!

People Just Don’t Understand RA

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I have rheumatoid arthritis. If you’ve been reading blog for anything length of time, you know that I have more than one autoimmune disease. I even have more than two! I have rheumatoid arthritis, fibromyalgia, and Raynaud’s syndrome. The all affect me in different ways, but in some ways they are similar and they all suck…so they have that in common.

It’s April 18th and it is only like 40 degrees here in Connecticut. It was damp, windy, and cold today, and I’m hurting from my hips down. While my hands are still stark white and cold, they aren’t today’s biggest issue. My hips, knees, and feet are in terrible pain. At one point today my knees went numb, and I’ve been hobbling around ever since. I’m not sure if I have mentioned that I had surgery on my tow about year ago to remove a bone spur and to fix some of the arthritis damage. Every now and then it still really hurts, and today was one of those days.

I was just putting laundry away and I felt like someone stabbed me in the toe. So needless to say, I’m trying to tell you it wasn’t my best day. I also pulled something in my neck while trying to clean all the crap out from behind my daughter’s bed. I swear I’m going to call Hoarder’s on my children. I swear my son told me his room was clean at least six times today, only to have me go in there and his bed wasn’t even made, not to mention there were empty Gatorade bottles on the floor. Oh, but he “needed” those. Heaven help me when we moved his bed out. We found his football sweatshirt that he’s been missing for weeks…the one that I “must have lost while doing laundry.”

I didn’t get half of the cleaning done that I need to for Easter, but there is always tomorrow. I am not having a big crowd for Easter, but I still need to have the house looking nice. Between work, not feeling well, and the kids being home this week, the house looks like a tornado passed through it. It will get there. I have to lower my standards a tiny bit and remember that I don’t have the stamina that I used to. I don’t have the joints that I used to.

One of the high points of my day was getting out of the house alone to do a little Easter shopping. I went to Home Goods and found this fabulous metal flamingo (pictured above). Did I mention that I love flamingos? He was like 4 feet tall and fabulous, but he didn’t have a price and no one could tell me how much he was. They told me they’d call me in the morning when a manager was in the store. Yes, I know I don’t need him. I know that he’s a tiny bit hideous, but I want him for my yard. We just were forced by the state to remove 12 trees in our front yard and now the whole neighborhood can see my house.

All the neighbors know about my flamingo obsession because of my light-up Christmas flamingo. I’m sure they are going to LOVE my new flamingo, whom I have named Brutus! Let’s hope no one snatches him up before I get back there tomorrow!

The title of tonight’s blog is similar to many others I’ve written, but once again I had a conversation, this time in the grocery store, about arthritis. I was hobbling down the aisle when I ran into someone I hadn’t seen in a while. When she asked if I was okay, I explained that I had rheumatoid arthritis and that today was just a difficult day. If anything, when I run into people and explain things, I play down my issues because I don’t want to have a two-hour conversation about it. What did she say? “Is that because you taught high-impact aerobics for all those years?”

Yep! It’s completely my fault that I have an autoimmune disease. Thanks! It’s not hard enough not knowing what I’m going to wake up feeling like each day; not knowing how to plan for things because I don’t know what my pain level is going to be…let’s blame the whole thing on my years of teaching high-impact aerobics and staying fit. The years of taking care of my body were clearly to blame. I get that people equate the overuse of a joint to arthritis. I understand that in general people don’t know what rheumatoid arthritis is, but it’s freakin annoying sometimes to have to explain it.

I did explain it tonight, mostly because I was annoyed. I corrected her by saying that my joints weren’t deteriorated as of yet and that the type of arthritis I assume she’s thinking of is osteoarthritis, and what I have is an autoimmune disease where my body is attacking itself. Maybe I went on for a few more minutes than I normally would, but damn, it felt good to let it out tonight. She caught me on a night that I was in terrible pain. Sometimes you just can’t hold back, and tonight was one of those nights.

 

 

Sorry to Disappoint

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For those of you waiting on the edge of your seats to hear about my reading with the medium, you’re going to have to wait another week. My migraine is back, thankfully not nearly as bad as the other night, but I feel crappy enough that I asked her if we could do it next week. Unbelievably, I woke up to about an inch of snow on the ground today. I swear, it was almost 80 degrees like three days ago. This is insane. Not only is it insane, it’s also hell on my rheumatoid arthritis and my fibromyalgia.

My joints were very stiff today with the cold. I had plans with my aunt and just being out in the freezing cold with the wind whipping around, needs a damn jacket again, and wishing I remembered to wear gloves…it was hell! It’s April! Enough of the cold.

My friend Christina posted on the Autoimmune Mama Facebook Group this evening that she felt she was always coming up short in one area or another in her life, whether it be her family, her clients, her business, her health, etc. It really made me think. I can so relate to how she feels, and I think most of us with autoimmune diseases can. It’s a juggling act between feeling well enough to take care of the things you need to do, and doing the things you want to do, combined with putting out the fires that come up on a daily basis. It’s hard! Heck, it’s hard just being a mom, let alone being a mom with an autoimmune disease (or in my case, more than one).

As I mentioned, my kids are on spring break. I’m reminded myself constantly that I love them…and that I went through hell to have them because I wanted them so badly. I need to remind myself so much because they are sending me over the edge this week. My day started out with my son crying that he was starving (again) and then whining about being bored. At one point today my girls were arguing and I told them to knock it off. My seven-year-old told me they weren’t fighting, it was the Littlest Pet Shops that were fighting. I actually told them that if the Littlest Pet Shops continued fighting I was going to separate them. Chalk that one up to things you never thought you ever say!

My point is it’s hard with them home. I’m trying to work. I’m trying to have fun with them, and I’m trying to not feel like crap…but the problem is that I do. My hands are back to feeling numb. I had the sharp pins and needles for over and hour this morning, followed by numbness. Now they are just freezing and white from the Raynaud’s. My hips and legs are sore and stiff. Is it the worst I’ve been? No. But I don’t feel good, that’s for sure.

What is making me happy at the moment is my job working for a nonprofit agency that helps children with special needs. I’ve been helping with an online auction and even doing a little fundraising (by email only because I’m anti-social and unfriendly), and I’m having a blast. Every time someone bids on something I’m thinking in terms of another family that I know we can help. Working there I see exactly how the funds are used. It’s not an operation that brings in a whole lot. Let me state the obvious…I’m not going to get rich working there, but I’m so happy doing what I do. I work with really awesome people, who are taking the time to teach me so much, and it just feels good when you help a parent in need, or you do something that you know is going to positively impact a child.

I try and focus on the good in my life when I’m having my low points. Yes, I’m feeling like hell, but I’m also lucky to have a job where I can work from home, in my pajamas most of the time. So all in all…it was an okay day. I’m hoping my kids are a tiny bit less annoying tomorrow. Also on my to-do list tomorrow is meeting with the head of the town’s Board of Finance…by myself. Did I mention I don’t really like people? I also don’t feel he and I have much in common, but I’m going to do my part to make sure he understands special education, but I don’t think he gets how expensive it is, and that it’s something that is state mandated. So, I’ll be stepping out of my comfort zone, perhaps with a half a xanax on hand, and going to have a cup of coffee with the BOF Chair. Oh the joy of it all. I’m sure I’ll have fun stories from that tomorrow.

Have a great night everyone!

The Sleepover That Won’t End

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The next time I think about having sevens sleepover, remind me that with my two girls that is NINE. Also remind me to not have kids I’m on the fence about. And then remind me that the girls wanted to play musical chairs at 11pm.

I think I finally have them settled down. The majority wants the television left on, but one of them is against it and making a fuss. I had two of them that didn’t even want to come up to sing Happy Birthday to my daughter. They were busy on the iPad that one of them brought. What was nice to see was that three or four of my daughter’s friends were really concerned about that and told them that they weren’t being kind.

My daughter has a sweet group of friends. I just think that two of them that are here tonight are tough. One wants things her way or she pouts, and the other one just wants to play by herself with her iPad. If I take them out of the mix, the girls had a great time. Lots of laughter and fun, but I can’t even tell you how exhausted I am.

I need to get through breakfast tomorrow and then once they leave, I’m telling my own kids that it’s Mommy’s nap time. They need to play quietly and give me time to rest before I have to entertain on Sunday for the family party. I haven’t even thought about what I’m cooking. I suppose I need to figure that out tomorrow.

Luckily my migraine is gone today. There is no way I could have pulled this off yesterday, so I’m thankful it worked out. I just sat down a little while ago and when I got up to get a glass of water, every joint and muscle in my body ached. It’s been a long day, but I made it through.

I’m still getting the Raynaud’s fingers a lot. At first it was only in the cold, but I didn’t even leave the house today, so it’s not that. My fingers are swollen and turning different shades of red and white. For those of you with Raynaud’s, how often does this happen? I’m not used to it happening when I’m not freezing cold.

Dear God…one kid just came upstairs to tell me it’s too hot for her to sleep. This night may never end. I still hear laughter. Someone save me from the house full of nine-year-old girls!

Again with the “Oh I Have Arthritis in My Hands, too”

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I’ve said it before, and I’ll say it again. I truly hate explaining rheumatoid arthritis to people. You don’t just get RA in your hands. I know people draw from their own personal experiences to sympathize, but let’s be honest, I couldn’t understand what someone with cancer is going through. I’d listen and try and offer support, but I’d never say “I understand” because how could I possibly without going through it.

Years ago I went through a lot to have my children. After several miscarriages, I thought I was never going to be a mother. We started to look into adoption because I couldn’t take the daily blood work and invasive tests anymore. It was almost two years of hell and I just wanted to stop trying.

After going to a few adoption meetings my mother in law asking me why I wasn’t worried that I’d adopt a crack baby. Just the kind of “support” I could possible want. My husband convinced me to see another doctor, and he was the first person to listen to me. I knew exactly what I thought was wrong, even though I didn’t fit the profile.

After a one hour conversation, we asked me what type of medicine I practice, to which my husband rolled his eyes and said, “she’s not a doctor, she just plays one on the computer!” But…when I had a doctor that listened and agreed with my assessment and what I wanted to do, I got pregnant on the first try.

Conceiving my next two kids was easier as we knew what we needed to do, but in my last pregnancy we found out I was expecting twins. We lost a twin at about 16 weeks, and that baby crushed my third baby and she was born with her legs and feet twisted.

I gues my point in explaining my fertility was that I received the most idiotic comments ever when I was going through pregnancy loss and infertility. When I lost my first baby, the receptionist at my old job (whom I was friends with) told me she was so excited. I looked at her like she had three heads and she said, “at least you know you can get pregnant.” So she was excited and I was devastated over my loss.

All the stupid people that told me as soon as I file for adoption that’s when people get pregnant. Or, just don’t think about it…. I could go on, but you get the idea.

The same is true when people try and understand rheumatoid arthritis. IT’S NOT OSTEOARTHRITIS!!! I don’t have it in just my hands, though my hands are a large source of pain. RA affects your whole body. There are days I feel like I have the flu and can’t move. There are days were I’m limping like a 90-year-old woman, and then there are days like today where despite some swelling and pain in my hands, I’m not feeling too bad at all.

It’s just frustrating! I’ll stop bitching about it now. As for my fitness challenge, Day #2 went just fine. I guess I wasn’t expecting the full sit-ups to hurt, but I can’t even remember the last time I did those. That kind of pain is good pain. I’m trying hard, though with a meeting at Panera Bread, I did have a half of a tomato and mozzarella panini — my first panini ever and it was delicious.

I hope everyone is having a pain free evening. I am off to put my hands under my heating pad to try and help the Raynaud’s and the feeling that they will never get warm…ever.

Do your sit-ups everyone!! And the last note is that my kitten is doing well. She is still limping and hold her foot up, but the vet said there was no evidence of burns or cuts. It’s likely she sprained it. I’m praying it wasn’t my 7-year-old holding her in a death grip to give her kisses, but I think it’s more likely she jumped down from somewhere high up and landed wrong, or she caught it in something. I hate to see any animal in pain. I was relieved to hear little Cookie will be fine.

A

Welcome Back Arthritis Flare

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Today didn’t go as expected. I should know not to have big expectations. My schedule was thrown off because my daughter was sick with a cold this morning and needed to stay home from school. This put off my plans to meet with the First Selectman until tomorrow, which was okay with me.

The Polar Vortex is back and it was everything I could do to get warm today. My hands were either on the heating pad or grasping a warm cup of tea. They are still stark white from the Raynaud’s and they are so cold that they ache. I ended up needing to take pain medication this evening as I could hardly walk and I started getting a migraine.

I can’t even tell you if it worked or not. I suppose the pain is lessened but when I have a migraine that’s the only thing I can feel. The left side of my neck to the shoulder is one big, giant knot. I keep trying to stretch it, but it hasn’t done much good.

Basically, I’m telling you that I’m one big downer today in terms of pain. Otherwise, I actually had a nice day spending some one-on-one time with my daughter. I worry about all my kids for different reasons, but my oldest daughter lacks confidence, just like I did as a child. I wish she could see what I see what I look at her. She is beautiful inside and out. While there are times when she gives me an attitude, she is such a genuine person. I love watching her grow and I’m more proud of her every day. I worry that like her mother, she’ll let her fears get in the way of her dreams.

Today she told me she’d really like to sing next year in the school fourth-grade play. This is my daughter that refused to speak to anyone for half of kindergarten because she was too shy. She performed in the Nutcracker the past two years, and I see how much she’s grown and trying things out of her comfort zone. I’m in awe of her. She’s such a good kid.

When I’m feeling down on myself I really do look at my kids and think, well, I’m not perfect, but my kids are kind and funny and good people. I’m doing something right despite my mistakes.

So here I sit at 10:30 at night with a migraine. Sleep is going to be difficult and I’m trying to decide whether or not to take a half of an Ambien. It’s such a catch-22 (one of many with autoimmune diseases). I need to sleep to help the migraine, but I can’t sleep because of the migraine. It might be stress related because of all the town drama and me getting worked up about talking to this guy tomorrow.

I am trying to tell myself he’s just a person. He might see himself as more powerful, etc., but he’s just some guy and I don’t care if he doesn’t change his mind, I am going to at least have him listen to me. Our town is so divided and dramatic right now. People are aligning themselves on different sides, and I want no part of that. I’m going to talk to him about my concerns for the education system, and that’s it. I’m just praying I don’t have this migraine when I am trying to talk to him.

For the moment, I’m sitting here watching “I Have 5 Wives.” How do I find these gems on television? In tonight’s episode the wives are all jealous of the wife who has the same birthday as the husband. The husband has stress because he is trying to keep them all happy. Clearly, this is must see tv. I need my readers to start watching this crap so I have someone to discuss it with!

Back to my hands for a moment — if any of my readers also suffer from Raynaud’s, I’d love some ideas for what to do when my hands get this bad. I know it technically isn’t a big deal, but when they are this cold and white, they really hurt. Even running them under warm water is painful. I’m so focused on the fibro and rheumatoid arthritis that I never really ask about the Raynaud’s. It’s more of a bother than anything else. I’d love some insight if anyone has it.

This post is very random tonight. I just re-read it and I’m all over the place. Chalk it up to me being scattered and in pain tonight. Tomorrow is another day.

The Phenomenon of Raynaud’s

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First of all, why to they call it Raynaud’s Phenomenon? Is it phenomenal to have your fingers turn white or yellow and hurt like hell? I certainly don’t think so. Raynaud’s phenomenon is a disorder that affects blood vessels, mostly in the fingers and toes. It causes the blood vessels to narrow when you are either cold or stressed. As someone with an autoimmune disease that makes up 90% of my day.

I don’t remember always feeling cold like I do now. I am constantly cold. My wood stove could be cranking and I still have a blanket on me. While Raynaud’s is more of an annoyance than anything to me, it really hurts. I’m not sure if it hurts worse to be out in the cold or when my hands and feet are warming up.

I have secondary Raynaud’s because of my other autoimmune diseases, but it is common to have primary Raynaud’s with no other issues. My youngest daughter has primary Raynaud’s so I’m ridiculous trying to keep gloves on her or getting her to wear socks around the house. It doesn’t seem to bother her, but it bothers me when her hands and feet are like little white ice cubes.

Even looking for a picture of Raynaud’s freaked me out today. My hands turn a yellowish white, but there are blue fingers and bright red and stark white. For something that’s not supposed to be any more than an annoyance, it looks darn scary.

I chose to write about Raynaud’s today because my fingers are still killing me. It’s a balmy 4 degrees today and I’m only going outside to get more wood for the fire every now and then. There’s no end in sight to our Polar Vortex and my son has an all-day wrestling tournament tomorrow. Don’t be jealous of that one! I was not all for the wrestling thing. My son is small for his age and he so wants to be athletic, but it hasn’t always worked out for him.

It turns out he did pretty darn well. I was the mom that you can hear through the video tape going “oh my goodness,” “watch his neck,” or “get him!” I was also the mom that cried every time I was there for a winning match. I do, however, dread spending hours on end watching wrestling matches tomorrow…and trying to keep my two girls occupied while doing so.

For now, my hands are going back into my heating pad as soon as I’m done with this blog. While my fingers aren’t “stuck” like they were the other day, one finger is causing me a lot of pain.

Hope you all are having pain-free or low-pain days.

I Need a Tropical Island

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As you might have read in my previous blog, it’s very cold here. With the windchill it’s about -10. I was surprised that I had such a good day in terms of pain yesterday, but it hit in full force this morning. Lately I’ve been waking with my right hand stuck in a curved position. My fingers just won’t move and it’s quite painful.

I immediately reach for my heating pad to warm my hands, but today even that didn’t do the trick. The kids had a 2-hour-delay so that made for a disruptive morning. As crazy as our morning routine is, I get everyone up and out the door on time. This morning when they had time to spare, everyone was slow as can be, and getting fresh with each other and with me. It made for a fun morning.

By the time everyone was on the bus, the pain in my hip was very intense and I opted to go back to bed and work from there. I have the luxury of working from home, but people often take that to mean I’m napping all day or watching the soaps while eating bon-bons. Guess what? The Young & The Restless can often be found on in the background, but that doesn’t mean I’m not working.

The thing about working from home is that you’re never off duty. Last night I wrote my blog at 11PM, just after I finished a job for a client. I don’t have 9-5 hours, and at this point with my fibromyalgia, RA, and everything else, I don’t think I could sit at a desk for 8 hours. I can take a nap on the days that I’m overly exhausted. I can sit on the couch with my heated blanket. I can get up and play with my cats when they want me to!

But…I do work! I blog for several clients. I do social media work, and I’m an editor. At the end of the day when the house is just as messy as it was when everyone leaves in the morning, I do get the stink eye look of “what did you do all day?” It’s called work! Yes, some of my work is on Facebook…but I’m still working.

Anyway, back to my island. I could really use a tropical island today. My hands are an awful shade of white from the Raynaud’s syndrome, and my whole body hurts. I feel like if I could have a few days of sunshine and warmth, I would feel so much better. That’s not going to happen any time soon, though.

How are you all feeling today?

It’s Okay to Say No!

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If you’re reading this blog, chances are you are suffering from your own autoimmune issues. Of course it’s possible you landed here by mistake.

One of the most difficult things for having to say “no” when I’m just not up to doing something. Let’s be honest, no mom wants to miss an event in their kids life. It takes a lot for me to say I can’t doing something when it comes to my kids.

I missed my son’s first wrestling match a few weeks ago because of a migraine. I’m not sure whether it was brought on by the stress that my son, who is small for his age, was even doing wrestling, or other factors sent me over the edge with the headache. Either way, I was unable to be there and I’m still kicking myself for it.

My son won his first match and I missed it. In the whole scheme of things, I know it could be so much worse. I am tired all the time and have significant pain, but it’s rare that my joints swell. I can usually power through an event, even if it means not being able to do much the following day.

As much as I’ve been there for my kids, I’m fixated on the wrestling thing. It’s the first time that I feel I let one of my kids down. My son came running into my room to tell me all about his first win, and I couldn’t have been happier for me…it’s just that I was miserable for me!

My kids seem to have a better grasp of what I deal with having RA, fibromyalgia, and Raynaud’s than most people. It’s the adults in my life that just don’t get it. I feel like people ask how I’m doing, but they don’t really want to know. They’d rather hear “fine” or “I’m feeling better.” We all have those friends and family members that do try and understand, but inevitably most don’t get it.

I try not to be a downer. I don’t discuss how I feel most of the time. Why bother? It doesn’t change anything. Maybe this is why when I say that I’m not feeling up to doing something, people are shocked.

As I mentioned in my last blog, I don’t look sick. I’m fairly young (even if only by my standards) and I’ve always been a very active person. It’s hard for me to admit I’m unable to do things. It’s even harder when the friends don’t understand.

I’m finally reaching a point where I’m starting to say no. No to volunteering. No to doing things that stress me out. And, I am finding an acceptance with this, even if it’s begrudgingly.
I’d love to hear how you deal with having to miss things, and the judgments from people that go along with it. If for no other reason, it’s great to know you’re not alone!