It Must Be a Funk

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Today kind of sucked. I’ll just put that out there. Though it was still freezing, my kitchen pipe is still frozen, and I’m still in some pain, my misery has nothing to do with any of that. As I mentioned before, I have three children. Two of the three are dyslexic and two of the three (not the same two) have ADHD. Deciding to put my son on medication for ADHD when he was in second grade was one of the most difficult decisions I’ve ever had to make.

My son was not the ADHD kid who couldn’t sit still or who was disruptive in class. He wasn’t the typical ADHD kid. His symptoms were mostly anxiety. His anxiety got in the way of him learning. He was so focused on what everyone else thought of him, or if he was going to be the last one finished with a test, that it really got in the way of his school work.

His school work turned around within days. He went from trying way too hard to fit in and doing dumb things to try and do so, to being comfortable being him. I’ll have a little brag and tell you that three years later he is on the honor roll and works his butt off for his grades. Very proud mama!

My youngest daughter showed signs of ADHD early on. There has never been any volume control with kid #3. While I love her imagination and creativity (at 6 she KNOWS she’s going to be a fashion designer), I know she struggles a bit socially. She is also on a low dose of ADD meds. She’s a sensitive kid, but often comes across as a tough cookie. She can be very abrupt if she feels you’ve hurt her feelings.

Anyway, today I got an email from her teacher that she had a very uncharacteristic day. Then it hit me, I was in such a rush that I didn’t give her the medication. Her teacher said she disrupted other students during reading, and that she scratched another girl. When #3 got home I talked to her about it and she explained her side of what happened. The girl was pretending to be  cat and was pawing at her and she wanted the girl to stop. Ok, fine. There are certainly better ways of accomplishing that.

So we called the girl to apologize and the mother was a doll. Both our girls are in a social skills group at school so we know they both struggle in the friendship area. #3 made a lovely card apologizing and told her friend how sorry she was. It all worked out fine after a long talk with my daughter about her responsibility to be kind and a good friend to others.

Now a few hours later I’m in tears over it. My middle child (#2) makes friends so easily. She has a small core group of girls that are all sweet and kind. I feel so good about her having the right kind of friends that really care about each other and don’t have that bitchy-girl attitude. But this situation brought up the fact that #3 doesn’t have a lot of good friends. She had the very best kindergarten class ever, and I knew nothing was going to compete with that group.

She moved into first grade with two girls from her previous class, but there just seems to be so much more drama this year. #3 doesn’t read people well and often feels people are being mean to her, and to be brutally honest, I’ve seen her not be so nice to kids in response to what she “thinks” is going on…but she’s read the whole situation wrong.

So tonight instead of rambling about me, I’m rambling about my daughter, who will be seven next month. I was never in the popular crowd and I don’t think it ever bothered me much because I had nice friends. I just want that for #3. I want her to feel confident that she has friends who like her. As a mom, I can help my kids with learning issues. I spend hours doing homework with #1 and #2, who have dyslexia. They are both really smart kids who happen to learn in very different ways. I can do that. I can get a tutor if it’s something I’m not good with, but I can’t make friends for my kids.

I’m just having a hard evening realizing that she might continue to struggle in this area, as my son does. All I can do is my best, and I do that every day, but some days it hits you that your best may not be enough. I’m going to sleep on it and re-evaluate things tomorrow. I know I’m over-reacting with my sadness. I think it’s a funk! That’s what I’m going to call it…the I’m sick of it being 5 degrees; I’m sick of being in pain; I’m sick of stiff and painful joints; and I’m in a damn funk!

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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.

My Fingers Are Stuck

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We’re still in the middle of the Polar Vortex, translation: it’s still really freakin cold here. Like ridiculously cold. Surprisingly I’m not doing too bad, with the exception of two of my fingers. My pointer and ring ringer on my right hand just won’t straighten out. I know it could be much worse and I hate to complain about two fingers, but holy crap they hurt!

This week has been a bit of a challenge. My car broke down on my way to teach a class Tuesday morning. It’s only be a mere $3,000 to fix it. Yep, you read that correctly. I’m trying not to let the money stiff get me down. I have a lot to be thankful for…and I know that. At times I feel myself justifying the fact that I’m in pain…that I know it could be worse. Do you do that?

I want to say how I feel. I want to explain how much pain I’m in, but I get that there are people out there fighting for their lives with cancer. At times I feel guilty crabbing over my pain, but what I’m trying to tell myself is that this is my battle and it’s my journey. There are no written rules. I’m in pain and I want to talk about it. Actually, at times I need to talk about it.

It’s just hard to describe. What hurts? Well, yes, my fingers are stuck and they hurt like hell, but the rest of me isn’t so great either. I’m not giving up or throwing in the towel, but I am doing a lot of research on medications. The only med I’ve tried for RA is Plaquenil. After about three months I did feel some relief, but when I got a second opinion, the new rheumatologist is leaning more toward a Fibromyalgia diagnosis. He did say that with a positive ANA, I clearly have an autoimmune issue. It’s possible that I have early RA or Lupus, but just how does one go about treating that?

I hate to be on medicine daily. Right now I do take a muscle relaxer at night that helps with the knots in my neck and general pain, but nothing seems to touch the joint pain, especially in the cold. I’d love to hear from other people with Fibromyalgia or other autoimmune diseases. What are you taking? Does anything really help with the pain?

Ok Fine, It’s Not a Good Day

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Today had some good moments. My daughter had her first practice for a play in which she has a small part. I so enjoyed seeing her perform. My son finished a huge project for school and I’m so proud of how hard he worked. So, contrary to what my friend,whom I haven’t spoken to in days, thinks; I do see many of the positive things around. I know I’m blessed, and I know things could be worse.

But holy crap, I’m in an enormous amount of pain right now. I doesn’t help that it’s -2 without the windchill. It doesn’t help that I shoveled the driveway yesterday to prove I could do it. But, as far as I’m concerned, even without those extra reasons, I could feel like hell today just because of my autoimmune issues.

Having fibromyalgia and RA, I don’t need to do one particular thing to aggravate my joints and cause muscle pain. It could just be a typical Wednesday night, but there is a part of me that still feels like I need to explain WHY I’m in pain. People are looking for that reason. Do you do too much? Did you sleep on your hands to cause that swelling?

No and no. This is just what like is like dealing with an autoimmune disease. I could be fine one day and miserable the next. It’s particularly difficult because I’m one of those people that moves along in high gear. When it takes me a minute to get out of a chair and stand up, it’s darn frustrating. Tonight, I’m walking around the house like a 90-year-old woman, hunched over and limping.

I think it’s the unknown that frustrates me the most. I can’t predict how I’m going to feel tomorrow. I can guess based on today, but it would just be a guess. It certainly makes it difficult to plan anything.

I’d love to hear any tips or tricks that help you get through the bad days. I’ll compile them all into a blog. You can either comment directly on this blog post or use our Contact Us form. What works for one person may not work for the next, but we’re all fighting this battle and if something helps even one person, it’s worth a shot.

Peace out! My heating pads are calling me.

 

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?

An Ambien Rant

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Well, the kids got out of school around 11AM today. Why bother! It’s still snowing and the news is saying it’s not going to stop any time soon. I have a glimmer of hope that there will just be a delay for school tomorrow, but it’s fading.

Tonight’s activities included me going outside to shovel with my son. Luckily it was fluffy, light snow and we could basically push it across the driveway. Surprisingly with the cold, today was a decent day in terms of pain. I’m not sure the shoveling was the smartest idea, but I felt guilty having my 10-year-old do it himself.

When we came back in, I headed to the bedroom to lay under my heated blanket. I had about ten minutes of relaxation when I heard a loud crash. Not wanting to move because the heat was feeling so good, I yelled to my kids to ask what happened.

My 6-year-old yelled back, “It was just a cotton ball. Nothing to worry about!”

For those of you that have children, you know when you hear a crash followed by an explanation like that, it’s time to go check what the heck they are doing! My darlings brought a sled inside the house and lined up pillows at the bottom of the stairs to sled into. Oh the joy of being a mom! I had to explain that this was not their brightest decision, and NO, they could not continue their mission.

My kids keep life interesting. They are all so different, but they all have good hearts. They are great kids…even when they are rotten.

I am dreading the cold that is hitting tonight and lasting for the next few days. Tonight it’s supposed to get to -15 with the windchill. I felt like sleep wasn’t in my future tonight so I took an ambien to help. I don’t take them often because I tend to online shop without remembering. I have to admit it’s exciting when packages come to the door and I have no idea what’s inside.

So tomorrow will likely be an indoor day. I think my big cat hates the cold as much as I do. He’s either with me on my blanket or sprawled out near the wood stove. I’m thinking it might be a movie day, as I do have some work to finish. That person’s novel isn’t going to edit itself. I’ll get to it at some point tomorrow, but for now I’m going to try to sleep (or shop, whichever comes first).

I hope you all had a pain free day. Stay warm! And to those of you in warm places…I’m so jealous!

Preparing for More Snow

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It’s New England, I shouldn’t really be surprised, but now we’re expecting 4-6 inches of snow tomorrow. I’m not one of the nuts out there shopping for milk and bread. I have all that covered. I am just preparing for the kids to either have an early dismissal tomorrow or no school on Wednesday.

As a work-from-home- mom, these unexpected snow days really throw me off. Don’t get me wrong, I know I’m extremely lucky to be able to work from home. I usually can rearrange my day pretty easily, but having three kids home all day doesn’t allow for a lot of down time.

I’m not proud…I’ll tell you I extremely enjoy those morning that I put the kids on the bus and realize I have the house all to myself without anything to do. Those mornings are the best!

But for now, it looks like this might turn out to be a crazier week than expected. I will get the board games ready!

Today was a really good day for me pain-wise. I was able to workout a little and get a lot done. With the Polar Vortex returning tonight my hip is aching (or it could be the yoga), but other than that I’m feeling a lot better than I have been so I’m enjoying every moment of it.

After a bit of an emotional night last night after my friend really making me angry, I’m surprisingly at peace today with who I am and my journey. I don’t need to apologize to anyone for not feeling well all the time. I think the sooner I switch to this type of thinking more often, the happier I’ll be.

So my thought for the night is to do what you can to find acceptance for yourself. In the end, it really doesn’t matter what anyone else thinks. As my best friend told me today, she can listen all the time, but it’s also great for me to connect  with people who feel the way I’m feeling. (BTW, she’s totally supportive of my blog). I also need to accept that I can’t always do everything I want in a day, and that just has to be okay. Maybe my phrase for the week will be Screw It!

Crashing My Excitement

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I didn’t take my decision to start a blog lightly. The idea came to me when I was searching for an article/blog post that would help explain to my friends and family what it feels like to live with an autoimmune disease. I found a great piece from the blog But You Don’t Look Sick called The Spoon Theory. it’s a fantastic piece describing one woman’s attempt to explain what her life is like each day to her friend. If you haven’t read it, I highly recommend it.

The problem was that it took me a while to find something I liked and in the process I thought that it might be therapeutic and fun to start my own blog. I want to reach readers that are going through the same issues, and dealing with life while trying to keep a sense of humor.

After starting the blog about a week ago, I still hadn’t told my friends or family about it…until today. I decided to tell one of my good friends how excited I was about the blog, and that I’m getting so many wonderful comments from people who “get it.” His response was not what I expected.

Not having read my blog, he feels that it is going to be a place for me to be negative and bitch about my life. He said he thinks it will further perpetuate my thinking that “no one gets it.” He even said he wouldn’t read it because he already knows what it will be like. He also said he wasn’t excited for me.

Let me clear something up for the rest of you. I don’t feel that I’m being negative about having an autoimmune disease. It’s the card I’ve been dealt, and I am well aware that there are far worse cards out there. I have found it difficult to meet people who are going through an autoimmune disease. This is still very new to me after almost two years. My diagnosis has changed multiple times, and I need a place where I can go to get my thoughts out and not only get advice from other people, but also help people in the process.

I have thoroughly enjoyed your comments because I feel in touch with people who understand. So as I abruptly walked out my friends door, I thought…screw you. Writing about my journey makes me feel good. Meeting people that may have way more information than I do is awesome. Helping someone, even in the smallest way, know they aren’t alone is not a bad goal. It’s not negative, and it’s not just a bitch session.

The things I’ve blogged about including weight gain, morning stiffness, and people not understand even what rheumatoid arthritis is are things that are important to me. So if my friend doesn’t even want to look at my blog, so be it. If he thinks I’m spewing negativity and spending hours talking about me illness, he is wrong.  If anyone can laugh at themselves, it’s me! I give myself plenty to laugh at each day. I’m an imperfect mom of three young kids who didn’t come with a handbook. My life isn’t awful, but it’s certainly not dull either.

I’m not perfect, but my journey is never dull and I’m choosing to share it.

 

A Day in the Life with Autoimmune Diseases

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As I mentioned before, being diagnosed with an autoimmune disease and figuring out exactly what is going on with me has been a long process. Starting with a diagnosis of Lyme disease, then rheumatoid arthritis, then fibromyalgia, and possible lupus. All in all, from reading other blogs, I know things could be much worse, and possibly someday they will be.

For right now, I’m taking it day-by-day. Like most people living with autoimmune diseases and chronic pain, every day is different. Living in New England, the winter seems to be much more difficult on me. At the moment we’re awaiting the return of the “Polar Vortex” and my body is already showing the signs that its arrival has begun. For the past few mornings, I’ve woken up around 5AM with extreme pain in my hands and fingers. It starts as pins and needles, but two to three fingers just completely lock up.

I switch on my heating pad, and go back to sleep. Mornings are just not my friend. My oldest child has to be on the bus at 7:20. He happens to be like his mama: he can’t fall asleep, but loves to sleep late in the morning. Getting him out of bed, fed, teeth brushed, etc. is no easy task, and as much as I’d like to stay in bed, I have no choice but to hobble into his room (two to three times) to get him up.

With three children and three different buses, my morning is super fun getting everybody dressed, fed, and out the door. I’ve given up on looking at my mirror before going to the bus stop. The bus stop is luckily in my driveway, but we have a few other parents and children who wait with us. For the first few days of school, I got up early and threw on some eyeliner before heading outside.

That crap ended quickly, and now I go outside in my pajamas, slippers, and a jacket. I now figure, these are my neighbors. I hear them screaming obscenities at each other from their driveway. With everything I’ve heard, they can overlook my bed head and completely disheveled self. After the last bus arrives I go back inside and get in bed. Depending on what day it is, I go back to sleep for 15 minutes, which I know is stupid; or I go back to bed for an hours or two. Some mornings I teach a Pilates class and while it is the last thing I feel like doing in the morning, I have found that it helps keep my flexibility, and 90% of the time I feel better when I’m done teaching.

I can’t lie, though. I love the two mornings a week that I can get back in bed, in a quiet house, and not have to worry about carrying for anyone but me. Does that sound selfish? I really do feel bad about it sometimes. I’m sure a lot of people are reading this and thinking I’m lazy, but if you don’t understand what it’s like to be me, than you just don’t get it.

My rheumatologist tells me that a regular sleep cycle is so important for people with fibromyalgia. I have the typical symptoms of muscle tenderness, migraines, and trigger points. He wants me to work on getting a good night’s sleep. The more I focus, though, the less I actually sleep. I’m back trying melatonin, and it, along with a xanax, helps me relax enough to fall asleep.

I just think people don’t get how difficult it is to have a normal life while dealing with autoimmune issues. I am lucky enough to work from home. If I wanted to, I could work from my bed all day — and some days I do! I go into an office one morning per week for a few hours. I don’t see how I can go back to working a full-time, in-office position. For those of you who do, I give you an enormous amount of credit.

While everyday is different, this cold weather brings on many daily issues. My legs hurt really bad, my right hip is just stuck in one position, and then there are my hands.  Some days the morning stiffness works it’s way out. Others not so much.

I feel tremendous guilt when my kids see me lying down a lot. Today my daughter told me her day was boring because I wasn’t playing enough. I had cleaning to do…not fun. And then I needed to rest…also not fun. The guilt got to me by this evening and I spent the last few hours playing board games with my kids. I may not be the mom who can always go out sledding, but I need to make more time for the little fun things.

Each night I take a muscle relaxer, which has really helped decrease my migraines. I was kind of expecting to feel all relaxed with it, but not so much. Overall, I think it helps, but I don’t notice anything much when I take it. I also take an anti-anxiety medicine. My doctor has talked to me about switching to Cymbalta or Lyrica, because those medicines can help a lot with chronic pain. I’d love to hear from people who have used either of these drugs. The last thing I need is to gain more weight, but if it truly helps the pain, it’s something I have to consider.

I think the point of this post (said in a round about way) is that I can’t plan for what my day is going to be like. Some mornings are so difficult to get out of bed, that I just can’t. I frequently get the eye-roll from my other half. At times I think he chalks it up to laziness. To be honest, my house wasn’t perfect and spotless before my diagnosis.

I would love to make plans in advance, but my best friends know that if I’m not feeling okay, I just can’t keep my plans. Again, I am lucky to have good friends who try to understand, but I don’t have that luxury with some family members. When they ask how I’m feeling, they expect me to say “fine” or “good.” Anything beyond that requires too much listening to the details of what I’m going through. You can’t make people understand if they really are so out of touch with anything you are going through.

Falling asleep is a whole other issue, but I’m working on it. I go back to my rheumy in March, unless things get unbearable. The thing is, I do have a high tolerance for pain. I am suffering, but it would have to be really bad for me to change that appointment. I just don’t know what else they can do for me without starting drugs like methotrexate. While I know a lot of people who have had success with it, my fear of losing more hair and feeling even more exhausted prevents me from giving it a shot.

I’d love to hear about your morning routines and any tips and tricks you have to getting started in the morning with the stiffness and pain.

Weight Gain…The Side Effect

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Did I mention that I teach Pilates and fitness classes? Of course you’d never know by the look of me at the moment. I’ve taught classes for over 20 years, but had to drop teaching cardio-type classes because my body wasn’t always up for that challenge.

While I really do feel yoga and Pilates help reduce my muscles stiffness and fatigue, I’m at the point where I’m looking in the mirror and wanting to cry. I’ve never been heavy. In fact, I was always underweight. Four days after the birth of my son, I was back in a size 1. God I hate that old me at the moment!

As many of you know, one category of drugs that doctors prescribe for chronic pain are in the anti-depressant family. While I don’t suffer from depression, I’ve been known to have anxiety. I broke down and discussed this with my doctor a year ago and we chose Celexa. In the beginning, I wasn’t hungry at all. In fact, I lost weight.

I’m not sure when I started gaining, but clearly I didn’t wake up this way one morning. It happened over time. I am currently on Plaquenil, Celexa, and Flexeril daily, and I have to publicly admit that I’m like 40 pounds over weight. I am seriously in tears as I type this. I feel awful, and I’m sure the extra weight isn’t helping with the joint pain. I’m hoping with this public admission that I can start to work on the problem.

I have been on more than one round of prednisone, and on top of being really crabby (way more than usual), it made me blow up. I’m waiting for it to go away…. Still waiting….

I’m looking for some support from Autoimmune Mama readers. What meds are you taking and did you gain weight? It’s hard enough feeling like crap, but feeling that you look like crap is a whole different ballgame.

If you’re in the same boat, what are you doing to lose weight?

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