Losing My Voice and Possibly My Mind

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I don’t think I’m getting sick. I mean I don’t feel like I’m sick. I feel like I’m getting an RA or fibro flare. I can’t really tell the difference with the exception the I think my RA flare tend to affect my hips and hands more and my fibro flares I feel more through my shoulders and muscles. Either way I start to feel rundown and achy. I’m not sure with the scratchy voice comes into the mix. i don’t have a sore throat so it could just be allergies, but I’m sounding a bit like Bonnie Tyler (and all the early twenty-somethings are asking who??).

I got to sleep in today, which was nice. I went out with some friends last night to play Bunco and had a few drinks for the first time in almost a year. I am not a drinker, mostly because I don’t like the taste of alcohol, but also because wine gives me migraines. The friend hosting Bunco made this fruity concoction with Limoncello and something else with strawberries and raspberries and it tasted like fruity lemonade. After three glasses I was very thankful I wasn’t driving, even if it was less than a mile down the road.

I truly needed the night out after this long week. I am finding myself so angry at people, and now I’m at a point where I’m questioning if lowering my Celexa was the right decision. I’m not going to say I haven’t had a lot on my plate. If you’ve been reading this blog you know I had a whole lot to deal with my son’s IEP and his school, and now there’s some bullying issues, which turned a whole lot worse when I heard a few things that have been happening on the bus, and trying to make ends meet is a constant struggle. Like every other parent in the world, I’m crazy running around from one activity to another, trying to squeeze in homework, dinner, haircuts, projects, etc. There are only so many hours in a day, and as much as I hate to admit it I’m not Super Mom. Add to that the fact that I’m a mom with an autoimmune disease that doesn’t know how she’s going to feel from one day to the next and go ahead and try and plan a week.

It’s not easy. But we do it! We make the best of it. I know I’m not the only one. I’ve heard from many of you through this blog, and honestly, that keeps me going. It helps more than you know to hear that other people are doing this, too. Of course, I’m not thrilled to hear others are struggling, but you get the idea.

About a month ago, my doctor lowered my Celexa in an effort to see if that was causing some of the weight gain. I’m only on 10mg, and I believe the average dose is 40mg. I was only on 40mg for about 6 months, then I went back to 20mg. I’m not sure it had anything at all to do with my weight, but I do see myself snapping a lot more now that it’s lowered. I think I handled stress and anxiety better at the 20mg. It’s something I need to think about and call my doctor about this week as I need a refill. I think a lot will depend on the scale on Tuesday. Of course, I’m sure the snacking and three drinks blew the diet again last night, but I was very good again today.

I am hopeful that tomorrow and Monday I can get out for a walk. Today brought back those painful pins and needles in my feet. It’s been a little while since I have had them. I was sitting at my son’s baseball game, which they bombed by the way, and my daughter wanted to run to the car to get a water and I couldn’t even go with her. I don’t think I can ever get used to that feeling. It’s like sharp little needles jabbing into the bottom of my feet. Not fun!

The rest of the day was just status quo. No real excitement other than grocery shopping and spending some time with my girls. Tomorrow is my son’s first playoff game so if you could send a few positive vibes his way for a spectacular hit, that would be awesome. The team is having a two game slump, and they need to make a comeback. I’m worried about tomorrow. Then again, when don’t I worry!

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Just a Blah Day in Autoimmune World

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

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

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

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

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

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

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

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

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

 

 

Crazy Weekend Is Over

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My weekend of birthday madness is over. Today we had family over to celebrate my daughters birthday, and what might be the coolest cake ever (see picture above). My daughter chose a cat theme and my friend made this cake with our three cats on it.

I wish I could say it was a fun day, but it wasn’t our best. I woke up in a lot of pain, and not in the mood to put up with snide comments from in-laws. My son worked really hard on a social studies project and his grandmother brought over a book for him to use. It was made by Highlights, and my son is in fifth grade. I explained nicely that he wasn’t able to use it because his project had specific requirements and it was targeted toward younger kids.

“I want to see him come here and read it and do the activities if you think it’s beneath him,” was not the response I was expecting. Some people are just really difficult. Drama number two was that my friend made the cake, vs. her friend making the cake. She leans over to my son (whose birthday isn’t until the summer) and said, “I know you like the cakes by my lady better so you just let me know what theme you want.”

Is everything a competition? At every turn I feel like she wants to one-up me and it gets old. I’m tired. I’m in pain, and I’m downright crotchedy. I really try not to complain, especially to people who don’t want to hear it. My hands are visibly swollen, and my cousin and my step-mother asked how I was doing. I gave a quick answer, but I didn’t want the focus to be on me.

After a while I start to wonder, is it me? Am I the difficult one? I have seriously never had this much difficulty getting along with others. I’m just feeling overall crushed right now. My kids were beastly. My parents chose to take my niece and nephew out for the day (something they already had planned, but come on…it’s their granddaughter’s party). I just feel like everything sucks today.

I don’t know what the hell was wrong with my kids. My son fought with his father, which set the tone for his lovely mood. The birthday girl didn’t like what I made for lunch and was a big crab, and the little one is just super loud.

By the end of the day, I liked them all again, but for a few moments there, it was touch and go. I know it’s normal to have days like this, but I’m having a tough time. My family is planning on going to Disney (all of us) this summer, and as they excitedly make their plans, I’m wondering whether I’m going to be able to walk the parks from sun-up to sun-down for days on end.

The last time we went was the week before I woke up not being able to move, thus beginning my journey with autoimmune disease. I am not the same person physically that I was three years ago. Heck, I almost died doing 10 minutes on the elliptical today. I’m already thinking, omg, I’m going to need a freakin scooter…and I just might.

I’m afraid to push it for a day or two and be in so much pain that I can’t move for the rest of the trip. I guess I should try and put those worries off until the summer, but I like to be prepared. I usually do my worrying in advance.

As much as I hate to admit it, having an autoimmune disease has changed my life. Whether it’s my hands and hip and overall joint pain from the rheumatoid arthritis, or the exhaustion, brain fog, and sensitivity to touch of fibromyalgia, or the fact that my hands turn shades of red and white from Raynaud’s, it all adds up to big changes. Changes in my ability to make plans. Changes in my ability to have fun. And, changes in my ability to be me.

Yesterday I had a crazy moment with my girls and I was singing opera and acting like a nut. Their laughter and the fun we had made me wish I could feel better more often. It’s not that we don’t have fun. My life is all about my kids. They are the best thing that ever happened to me…even when they are grouchy. I just want to be able to let go and have fun more often. That’s my new goal. Add it to the list.

 

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!

I Saw the Sun Today

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It was like I hadn’t seen the sun in years. Just walking outside and feeling the warmth of the sun made my afternoon. I wish I could have gone for a walk, but with two birthday parties and food shopping to do, that didn’t quite happen.

I felt pretty good for most of the day, but two straight hours of standing at the second birthday party did me in. I knew it wasn’t going to be good for me, but for some reason I feel stupid being the one that needs to sit down and can’t make it through. It’s something that I just personally need to get over.

At this point my back is thoroughly stiff and my hips and legs are very sore. It’s not like I don’t try and exercise on a regular basis. Standing should be that difficult, but for whatever reason, it starts in my back and then moves down my legs if I’ve been on my feet too long.

The flip side of it is that if I’m sitting too long, my legs also get stiff. It’s kind of another crappy catch 22. I need to get up and move, but standing in one spot just kills me…especially for a two hour clip. My kids had fun with their cousins, and that’s what really mattered.

My other big news of the day is that I’m being bashed in our local newspaper. As I mentioned in a previous post, we’re having a lot of political issues in our town and education budget was reduced a ridiculous amount. I wrote a letter to our First Selectman, but he’s a baffoon and neglected to answer me. So I copied the local newspaper and shocker…he responded with an hour or so.

The newspaper requested to print my piece, and it didn’t matter at the time, but now I have all the crazies commenting that I’m an abortion lover, etc. It amazes me how people make such assumptions because I said I think the reduction in the education budget was too small and that we were lied to by our First Selectman.

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What I learned today is…don’t read the comments! I put myself out there because I believe our kids deserve more. I have three kids with different special needs and I don’t want the special education staff to be reduced. The needs of my children are nothing compared to the non-verbal autistic kids in our community and guess what? They have every right to an education, too.

It pissed me off a little this morning, but it’s done and I won’t go back and read any more nastiness.

The exciting news of the day, in case you didn’t see the post was I started an Autoimmune Mama Group page on Facebook. Please take a moment and send a request to join. I would love for us to connect on Facebook and have a place to ask each other questions and garner support from people who understand our fight against our autoimmune diseases. It’s really something that alters your life, and I’d found that most people simply don’t get it.

So please join the group and post away!

Snow and Pain Seem to Go Together

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Today was pretty darn good in terms of pain, and then somehow I must have jinxed myself. Of course, it could be that it’s cold and there is yet another snow storm hitting our area tomorrow, but my lower back and hip are in terrible pain.

I was banking on my kids going back to school tomorrow. They have been off since last Wednesday for a winter break. I love them, but I want them to go back to school! I need a day to myself to get organized. I lost a larger client over the weekend that I did social media and blogging for. If I’m being honest (and not naming names) it was my least favorite client because the CEO clearly didn’t have much respect for women.

In this day and age that still occurs. It’s mind-boggling to think that people can get away with treating employees like that, but I do think with him it was a cultural thing. I stayed with him so long because I truly liked the product and its use in the education field. But, now that our contract is done, I’m actually feeling like it’s for the best. I don’t need to work for someone who treats me like I’m stupid.

Funny enough, one of the writers that used to work for me just found my email through a Google search and wrote me a note to ask what happened and to say that she learned so much working with me. Stuff like that means so much. It only takes a moment to let someone know you touched their lives.

Actually, in general I’m trying to get rid of people who bring me down. My “friend” that I had the argument with about the blog has not contacted me at all, and I’m at peace with it. If he truly thinks of me as a big complainer and negative, then I don’t need him either.

Instead, I am surrounding myself with people who make me laugh and smile. I am lucky enough to have a lot of those in my life. I teach a Pilates class twice a week and I swear we crack up the whole time. I try and get them talking so they don’t notice the pain or that we’ve been holding a plank for two minutes.

We discuss trashy tv, like 90 Day Fiance and really anything going on in the news. Not only is it good for me to keep moving, it’s also good for me emotionally to laugh and truly enjoy myself with a group of people.

Anyway, today’s message is to try and stay positive. I can’t say things will get better in terms of having an autoimmune disease, but we are responsible for surrounding ourselves with positive people who care about us.

Hoping you are all pain-free today, and stay safe and warm if you’re impacted by this next storm.

I Survived the Birthday Bash

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Twenty kids ranging from 6-10 running around a gymnastics facility. And that, my friends, was a darn good party. The birthday girl had a blast, and it seemed like everyone had a great time. I came home and took a nap…for two hours. Today wasn’t awful in terms of pain, so I lucked out. My hands are still stiff and in pain, but the pain is much more manageable today.

I did have a rough morning, but that’s more because everyone was annoying me. My in-laws are famous for making plans and not telling me. It’s frustrating to hear everything last minute. I like notice. I like to plan my day. They wanted to go to the movies after my daughter’s party, but it didn’t end up working out because the theater closed due to roof issues because of all the snow. Did I mention we have more coming on Tuesday?

My kids haven’t had school since last Wednesday. Heaven help me if they have a snow day on Tuesday. I don’t even know what we’re going to do tomorrow, other than number two’s project on Ireland. Number three has plenty of new toys to play with and number one needs to clean his room…badly!

I just read a post from another blogger about how alone she feels with her chronic pain, and I guess that’s really what’s been bothering me the past few days. Most people just want to hear that I feel “fine.” They don’t really want to know, even if they ask. It’s very lonely thinking most people don’t understand what it’s like just to get out of bed and walk into the kitchen on some mornings.

I’ve been feeling pretty depressed about it. I keep hoping there is an end in sight, but I’ll have a good day and then it seems to go right back to a high pain day. I haven’t had a few good days in a row in quite a while. I am feeling like Lyrica is in my future, mostly because I just want my life back. I want to go to a party and be able to run around with my kids.

I want to be on the floor being able to play games and not have trouble getting up. It’s frustrating and depressing. I’m not THAT old. I need to make a change, and right now, it’s looking like it’s medication.

I totally cheated on my gluten-free diet today and had birthday cake, but I’m getting serious again tomorrow and getting back to exercising every day, if possible. I know damn well there are days that I am not up to exercising, but on those days, I’m going to at least do some light stretching. I need to make some changes so I start to feel better about myself. I hate being heavy. I don’t like that my girls have heard me say I’m fat. I don’t want them to grow up with the issues I have.

I was a twig all my life until after number 3. Heck, two or three days after I had number one, I was back into a size 1 pants. My kids are all very lean and other than number two, they all eat well. Don’t ask me how number two survives on peanut butter crackers, waffles, pancakes, and crap.

Anyway, tomorrow is another day, but before bed I decided that I’m going to do a quick ab workout so I don’t keep putting things off until tomorrow. There is no reason I can’t start today.

I hope everyone is enjoying their weekend and is relatively pain free.

Leaky Gut–One More Thing to Worry About

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You have to be living under a rock if you haven’t heard mention of Leaky Gut in the last few weeks. Dr. Oz has done several segments on it, and it’s being linked to autoimmune diseases. So let’s go over what we know. Like many autoimmune issues and chronic pain, leaky gut, which is also called increased intestinal permeability, can be difficult to diagnose.

First, there is no specific test to determine if someone has leaky gut. It has a wide range of symptoms and can present itself different in each person. Because of this, as with fibromyalgia and chronic fatigue syndrome, there’s a fair amount of skepticism in the medical community about the legitimacy of leaky gut. But with Dr. Oz talking about it all the time and the term being thrown around in autoimmune forums and communities, it’s getting more and more attention.

Okay, But What the Hell Is It?

The lining of our digestive system acts like a net with tiny holes that only allow through certain substances that are very small. It also keeps out substances that it deems undesirable. When a person has leaky  gut, this net becomes damaged, resulting in bigger holes that allow more things to pass through that ordinarily couldn’t.

When this happens, bacteria and viruses, as well as undigested food can leak from inside your intestines into the blood stream. That grossness can trigger your immune system to react. This is where it can affect those of us in the autoimmune community. The end result is inflammation in various parts of your body, causing a wide variety of symptoms like bloating, cramps, fatigue, food sensitivities, flushing, achy joints, headache and rashes. Any of those sound familiar?

So let’s get this straight. I have bloating, achy joints, and headaches. This is why I tend to stay off WebMD. I over-diagnose myself, but I do think there is some information here that is worthwhile knowing as we treat our autoimmune diseases.

According to DrOz.com, “Multiple food sensitivities are another hallmark of leaky gut, because partially digested particles of protein and fat may leak through the intestinal wall into the bloodstream and cause an allergic response. Increased intestinal permeability may potentially cause or worsen a number of other conditions, including Celiac disease, inflammatory bowel disease (IBD, which includes Crohn’s disease and ulcerative colitis), irritable bowel syndrome (IBS), arthritis, psoriasis, eczema and asthma.”

As you know from previous blogs, I’m attempting to eliminate gluten from my diet to see if it is impacting and worsening some of my rheumatoid arthritis and fibromyaglia symptoms. My goal is to be on as little medication as possible, but I’m also at the point where I’ve been in so much joint pain that I’m missing out on normal activities. Everyone needs to weigh their decisions about medications for themselves. But let’s be honest, some of these medications are scary. For many of us, the benefits outweigh the risks, though. It’s not an easy place to be.

And guess what else can lead to leaky gut? Stress. And who among us doesn’t have that in their life? I’m a mom of three kids ages 7, 8, and 10. I run around like a chicken with my head cut off most of the time trying to juggle activities, homework, dinner, baths–all while being a working mom. I don’t think I know anyone that can say they have no stress, but boy it sure would be nice.

How Do I Know If I Have It?

While there’s no specific test that can tell you with 100% certainty that you have leaky gut, a positive Intestinal Permeability Test is strongly associated with the condition. This test measures the ability of two non-metabolized sugar molecules – mannitol and lactulose – to get through the digestive lining. With test combined with symptoms you are experiencing, doctors can make a diagnosis.

What Can I Do if I Have Leaky Gut?

Like everything else in the vast array of autoimmune diseases, there is no miracle pill or cure. An anti-inflammatory diet that eliminates refined sugars, dairy, gluten, alcohol and artificial sweeteners like aspartame can be very helpful. While I don’t promote products or get involved with things like that on this personal blog, I truly advise those of you who haven’t eliminated aspartame to do some research. You can also looking for an upcoming blog post on the subject. Believe me, I was a diet soda drinker at least once a day. I’d be lying if I said I didn’t miss it, especially when I eat pizza, but when I cut out the diet soda I found that my cravings for sweets also lessened.

So what can you eat? Eating lots of anti-inflammatory essential fatty acids in fish and nuts, and filling up on green leafy vegetables, high-fiber and fermented foods that help to promote the growth of good bacteria is also crucial. It’s also a good idea, according to my own doctor, to take a probiotic daily. This can help heal a damaged intestinal lining.

Most people will notice improvement within 6 weeks depending on how serious the condition is within the body. So here’s what I’m thinking. I’m working hard on giving up gluten (I did eat some cupcake batter today, and I’m not sorry about it), I don’t eat foods with aspartame, and I hardly drink alcohol. What’s left is refine sugar and dairy.

To be honest, despite how many people who are on a clean eating program without sugar, gluten, and dairy are saying how much better they feel, I don’t want to set myself up for failure. As I mentioned in a previous post, I have a goal of cutting way back on sugar. I think I was supposed to start that this week, but did I mention how much pain I’m in and that my kids are home for February break? Did I mention that we just got almost a foot of snow and that we’re getting more tomorrow morning?

I can’t make it through without my chocolate. I know my limitations! My point is I’m going to try and be conscious about the processed foods and sugar. I’m not going on any diet that won’t allow chocolate, but if some small modifications can help with my swelling and pain from fibro and RA, it’s worth a shot.

Dairy is the other thing that I would have a hard time with giving up. While I’m not a milk drinker, I do enjoy my Greek yogurt (personal note: have you tried Yoplait Greek? It’s delicious!) and I like cheese. I eat fresh mozzarella, basil and tomatoes for lunch–and if you read my blog on nightshade vegetables, you know that’s not recommended either.

I just don’t believe in setting myself up for failure, especially now when I am down on myself. I’m heavier than I every have been and feel and look awful. Hell, I felt so ugly one day that I bought those Cindy Crawford creams with the super melon from France that’s probably a cantaloupe — they do make my skin very soft, by the way.

My point is that a complete elimination diet is not within reach for me right now. I’m doing pretty darn well eating gluten free, and now I’m going to cut down on the sugar and make sure I’m drinking a lot more water to flush things out of my system.

I’d love to hear from you if you’ve been diagnosed with leaky gut. What are your symptoms and does the elimination diet truly make a big difference? Please keep the conversation going either by commenting her or on the Autoimmune Mama Facebook page. Don’t forget to like the Facebook page or follow us on Twitter @AutoimmuneMama1. Feel free to use the Facebook page to start your own conversations and ask questions. We can help each other both through information and support. You all have no idea how much you’ve helped me already. Thank you!!

Of Course the Pain Is Gone

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I believe I called it in yesterday’s blog that I’d wake up and feel much better today since I scheduled a doctor’s appointment for this morning. My hands were hardly swollen and other than feeling like a migraine is coming on, I’m doing pretty well.

My rheumatologist really wanted to believe I just had fibromyalgia since I really do fit that mold. I think he was hoping that because my swelling was minor, that it wasn’t early rheumatoid arthritis or lupus. He wants to do a bunch of blood work to check my levels. Chances are I won’t get that done tomorrow with the wonderful storm coming in, but I’ll get there on Friday.

He said that the fact that my hands were significantly swollen and stuck for two to three days before the appointment, that really is more of a rheumatic symptom. Fibro is pain all over with tenderness at the trigger point areas. I definitely have fibro. There is no question in his mind or mine, but now he is thinking that the early RA diagnosis is also correct. We’re going to see how my blood work comes back and how my pain level is over the next week.

If my blood work comes back the same as it has been, with an elevated ANA being the only thing that’s off, we are going to consider Lyrica. I need help people!! Please give me some feedback if you are on Lyrica. You can either comment on this blog post or start a conversation on the Autoimmune Mama Facebook page. I’m hoping that more of my readers will start to post their own questions or vents on the page. That’s what it is there for. I so appreciate the positive feedback. It’s just so nice to connect with people that understand what my life is like with an autoimmune disease. You all have helped me more than you know.

If my blood work comes back with an elevated RA level, I will go back on Plaquenil. I guess my main concern is that I’m currently on a ow dose of Celexa for anxiety. I tried to go off of it completely a few months ago, and I was downright evil. I think I scared my kids one day when I snapped at them. Lyrica is also for anxiety, so in my head, the plan would be to start Lyrica and go off Celexa.

My rheumatologist said it is fine to be on both as they do very different things, even though they both work for anxiety. I just don’t want to be on so much medicine. I’m trying this gluten-free diet and pretty soon I’m cutting down on sugar. I think I was supposed to start that today, but it’s my daughter’s birthday and dammit, I had ice cream and it was delicious!

I know as my condition gets worse, I will likely need more meds or different kinds of meds, but my goal is to get the pain under control with the least amount of medicine possible. The doctor did give me more pain medicine for days like I had earlier this week. I don’t mind that because I take those only when I really need them — sparingly. It’s really just the every day factor that bothers me.

So for now I’m doing nothing different until my lab work comes back. I’m going to take another muscle relaxer to help with my migraine and try and relax after a long day.

I was one of the room moms for my daughter’s class Valentine’s party, and we went out to dinner for her birthday. All three kids are still up because they are off from school until next Tuesday for February break (yay me!). All the area towns that were supposed to have school tomorrow have already announced that they will be closed because of the impending storm. Looks like we’ll be going stir crazy tomorrow since we won’t be leaving the house.

I have to laugh at all the crazy people buying enough food to be snowed in for a week. Come hell or high water, I’ll be leaving the house at some point on Friday. I hope those of you getting the storm (practically the whole east coast) stay safe and warm, and of course, pain free.

Swelling, Brain Fog, and Pain…Oh My!

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I’m not doing much better today. I finally fell asleep last night around 4AM, and then took the morning off and slept until noon after I got the kids on their buses. My hands are more swollen then they have ever been, and I can’t even tell you what body part hurts the most. I hurt everywhere!

Days like this are so hard, and I know my fellow autoimmune sufferers can understand. I don’t want to sleep all day. I have a lot of things that needed to get done. The people who say “just push through it” don’t have a clue. I am the person that just pushes through. Most moms take care of themselves last. We aren’t allowed to get sick. We hold our little ones as they cough all over us, and when we finally get sick the caring for the children doesn’t stop. We push through.

I guess that “push through it” annoys me because it implies that I’m not trying to push through the day. What many people don’t know is I’m pushing to get through of most days, but they don’t get that. When I have a day like today, there is no pushing through. I can’t move without intense pain.

I’m walking hunched over, and when I get up I feel like my knees are going to give out. I even had trouble holding my cup of tea today…so NO, I’m not pushing through anything. I’m letting my body guide my day and doing what I need to do to get through. I refuse to let anyone tell me that’s some kind of failure…giving in and staying in bed most of the day. As far as I know, I’m the only person in this body and no one else can judge the level of pain I’m in.

After I put the kids to bed, I took some narcotic pain medicine. The thing I hate the most about it is that they all seem to make me itchy. I constantly scratch myself when I take percocet, vicodin, or dilaudid. It’s some weird reaction, but I would rather be itchy than in pain. To be honest, the medicine just took the edge off the pain. It’s not like I’m feeling good at the moment; I’m just in a bit less pain.

Brain Fog

I don’t think I’ve touched on the topic of brain fog much on my blog yet. I think it’s something I don’t like to admit to having. I’m ready to tell you, that today was also hellish in terms of brain fog. I know my routine, yet for the past few days I’m forgetting things. Last Thursday I forgot to bring my daughter to dance simply because I didn’t remember it was Thursday.

That’s just not like me. I know these storms we’ve been having contribute to the amount of pain and other symptoms I’m having, but I’m just not sure what to do about the brain fog. It doesn’t seem to get better with sleep. I’m at a loss for what to do. Any helpful hints are most welcome.

Going Back to the Rheumatologist

I’ve also given myself a deadline of the weekend to start feeling better. I really wanted things to work going off my RA meds, but I’m seriously considering going back on the Plaquenil. I have researched other things I will ask the good doctor about, but I just can’t keep going on in this kind of pain. I want my life back!

Tomorrow is another day, and I’ll work on being less crabby and less of a downer. We all have days like this, I’m sure.

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