Where the Hell Is Spring?

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I’m freezing! It’s almost May, for crying out loud! Where is the warmth? Where is the sun? My hands are like ice cubes, and once again I am sitting here with my electric blanket trying to stay warm. Today was another damp, rainy day — the kind where it’s just really hard to get warm to begin with.

This whole week is nuts for me with appointments, work, and errands. I don’t have much down time at all. I had about an hour to myself today and I thought I could take a quick nap, but I ended up working straight through it. Next week will be easier, but need to get there first.

I’m trying to pace myself to be up and ready for my friend’s wedding on Saturday. I need to be at the hair salon at 9:30am on Saturday morning, and the wedding is at 4PM. That’s a long day with no rest in there for the autoimmune chick. Not to mention two of the bridesmaids are in their twenties with no kids, and have no idea what my level of exhaustion is. The good news is that everyone is nice. I feel like if I need to sit for a while, I’m just going to have to say, I need to take a little rest.

I’m not the girl who will be able to dance all night, but I may have come up with a plan to deal with my dress issue! I brought up the whole boob issue to my Pilates class this morning and they mentioned that there is some kind of boob tape that you can tape the girls down with to appear smaller and hold them in place. Fascinated by this I went home and Googled it…and yes, people there is Boob tape and a Guide to Taping your boobs. So, needless to say, all the push-ups I made my class do this morning were for nothing…I’m buying boob tape and taping the girls down.

That’s on the docket for tomorrow. My dress is ready and she was able to let it out about a 1/2 inch. Between that and the boob tape (and perhaps a water pill), I’m hoping for the best. Not to mention, I have also been eating really healthy — lots of vegetables and chicken for dinner, and of course, I’m trying to be more consistent with drinking loads of water.

I keep telling myself that this too shall pass. I’ll get through this. It’s one more obstacle, but if I don’t start losing some weight with all that I’m doing to get healthy and eat right, I’m going to take my doctor’s advice and have the CAT scan. I’m giving it two more weeks. I’ve been very good about my eating for a while now. I’m actually really enjoying my meals.

I’ve made some great dinners…too bad the kids won’t touch them. My older daughter loves vegetables, so she’ll try some of it, but my son won’t eat any vegetables. They are all so different. I swear I make something new and they walk into the kitchen and say, “Ew…what’s that smell.”

I hope all of my readers are okay with all the storms that are going on throughout the country. Some very scary stuff. If you’re in those areas of the US hit by the tornadoes, please comment and check in to let us know you’re okay. We’re also chatting on our Facebook Group. Come on an join the fun.

 

Go Away Migraine

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I feel like a broken record, but I still have a freakin headache. I didn’t have it all morning, but around 1pm it started up again. I’m trying to look at everything I’m doing…what I’m eating, what I’m drinking, etc. I suppose I could be drinking more water, so that’s on my list for tomorrow. I know I have had days where I’m much better about drinking lots of water. Today was busy, from beginning to end, and when I’m running around, I don’t always remember to take water with me.

So the plan for tomorrow is drink more water!

I’m not sure what I was thinking when I planned two check-ups for my daughters on the same day — two hours apart. I don’t think I was think at all! Both check-ups went well, and I will likely start working one day per week at the pediatrician’s office within the next few weeks. I work for a nonprofit organization that helps families of children with special needs, and working one day a week from their large office will be like a “home base” for me to meet with a lot of clients.

I’m actually quite nervous about it. I do most of my consulting on the phone now, and I truly love what I do. I somehow morphed from a full-time editor, to an editor/social media consultant, and then through my own learning process having children with dyslexia I learned the ins and outs of the special education system. When an opportunity came up to help other people, I jumped at it, and it turned into a bigger opportunity than expected.

It’s all good. I just need to learn how to be a people person again. With that also comes the fear of needing to feel well consistently. Perhaps it will do me some good to have to get up and out more often. Who am I kidding? It’s going to suck having to get out of bed! I really like my bed.

My only other news of the days is that I finally did call my doctor regarding the loss of feeling in my hands and feet (actually it’s my fingers and toes). This prompted a discussion about peripheral neuropathy and a super fun test that goes along with that. It can also be a symptom of rheumatoid arthritis, which is what I’m banking on at the moment. I don’t need to add another diagnosis to the mix. I’m a medical nightmare as it is!

 

 

 

I’m Still Here…Just a Hiatus

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I didn’t even realize how long it had been since I had written a blog. That’s the problem. I was in the habit of doing it every single night, without fail. I allowed myself to take a night off during my extreme physical exhaustion and it turned into a whole hiatus! Let me catch you up. I’ve been tired. I still have a headache on and off…mostly on. Today is the first day in a while that I haven’t had to take an Excedrin Migraine.

The headache has been draining. I almost missed out on our neighborhood girls’ night of Bunco on Friday, but I decided to suck it up and go anyway. I ended up needing to pop some Advil halfway through the evening just to get me through, but I really needed to get out of the house. I feel like I’m here home working, sleeping, or taking care of the kids. It felt good to get out and laugh.

Last night was my friend’s bachelorette party. It was very low-key. It’s her second wedding, and we’re all in our early 40s. We’re not exactly the strip club crew, so we decided to go to this wine and painting night at a local club. The have drinks and food, and offer a painting class. I haven’t laughed that hard in weeks. All of the sudden I felt like I was Van Gogh with two ears, blending my yellows and dry brushing to get the perfect hue. I took step by step photos, which you will see throughout this blog and posted them all over my Facebook page, and literally laughed throughout the whole thing. We had a great time.1973376_10203789404836964_7147673850525718626_o

Today was a mix of running way too many errands. The first of which was bringing my bridesmaid dress to be fitted (finally). There is nothing like waiting until the very last minute to realize that your boobs doing fit in the fucking dress. Yeah…that was my morning. I’ve never had a shortage in the boob department, but with some extra pounds, there are extra boobs. I haven’t changed since they measured me, so I didn’t think to try it on–big mistake! So, the plan is, the dress lady is going to try and let the dress out in the boob area about 1/2 inch, and I am on a diet of celery and water, HAHA!

We were able to zip it up, but it wasn’t very comfortable. The good news is that it isn’t low cut, so although it’s tight, I’m not hanging out everywhere, but it would really help if I could drop three or four pounds this week. I’m going to try buying one of those minimizer bras that supposedly takes off two inches, but even the seamstress wasn’t sure that would work. At this point, I’ll give it a shot. The rest of the dress fits well, and I don’t look as bad as I thought I was going to.

It’s not what I’d have picked, but I’m not the bride. I did find adorable shoes at DSW. OMG, I have never been to DSW. That was quite a treat. I’m not really a shoe person, or at least I wasn’t until I went there. I didn’t have a lot of money, and I had the girls with me (who were picking sparkly hot pink 6 inch heels), so it wasn’t a great time to shop for me. I found some really pretty silver sandals to go with my dress, so that crossed all my wedding stuff off the list.

My exciting news to report is that my daughter got the part in the Wizard of Oz that she tried out for. It’s a tiny Munchkin role, but she’s so excited. It’s a very big deal to her, so I’m excited. We went to the first cast meeting tonight, but the rehearsal don’t start until June. It’s going to be a lot of fun to see her on stage. They actually had a few Munchkins drop out so now they asked if any of the kids had siblings that were interested. I came home and asked my youngest daughter, and as of now she says she’d like to do it. We’ll see if she still wants to do it on the day of the audition.

As for autoimmune life, besides the migraine hell, my hip is still giving me a lot of pain. It resonates down my leg at times, giving me even more pain, and when it’s cold my hands and feet still go numb. This morning my two fingers got stuck again for an hour or so. It’s annoying. I keep hoping that it’s going to get warmer and I’m going to feel better. Heck, it’s almost May. It’s still not warm. In fact, I had a jacket on today. The sun was going in and out and the wind was whipping around. It was so windy earlier in the week that it blew my patio table all the way across my deck.

 

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This picture above was one of my favorites.  posted it with the caption “Nailed It.” I had so much fun with that damn class. I need to do more painting. I actually love to paint. I made each of my sister-in-laws a beautiful set of table and chairs for their baby showers, painted with their baby theme, and I painted a toy box with a safari theme for one of my best friends. I enjoy it very much and find it very relaxing. It’s actually something I wish I had more time and space for. I don’t consider myself overly artistic, but if I have a basic outline to work with, I do pretty well.

As my psychic client told me, I need to find more time to do things for myself. Perhaps painting will be one of them. Right now, my hip hurts too  bad to think about much else. Time for my heating pad and hopefully I’ll fall asleep sooner rather than later. I am glad to be back, and I hope everyone has been relatively pain free. Lots of crazy weather going on all around and I know that affects us autoimmune peeps. Check in with a comment and let me know how your doing!

 

Psychic Mediums and Fibro Flares

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It’s Hump Day! Or in my world fibro flare Wednesday and the day of my psychic medium reading. Let’s start with the boring fibromyalgia stuff. I had another day of feeling exhausted, but not quite as bad as Monday or Tuesday. I at least got a few things done, and had a bit more energy.

My right hip and leg had been bothering my and I’m back to having numbness in my feet, mostly my right toes. It’s still just an annoyance so don’t pressure me to call the doctor just yet.

In other news I ate about 10 Ferrero Roches today…maybe even more, so I’m fairly sure I blew the whole diet thing. I’ve been doing really well just eating decent meals and not really snacking. I’m not even sure what happened today. I think I got stressed about money. I can’t even really blame the stress. I think it’s more that I can’t have just one. If I know they are there and I have one, I need to go back for more, so I just can’t have stuff like that in the house.

My psychic medium reading was okay. She started off by telling me that I need to slow down. I need to give up some of the things on my plate because it’s affecting me physically. I happen to agree with that as I just decided yesterday to step down from a nonprofit board that I’m on. It’s not the one that I’ve spoken about in the blog, it’s one that I got talked into being on a few months ago, and at the time it sounded like I would be doing a little bit of social media help for a great organization.

It IS a great organization, but they need way more help than I have time for. I feel bad, but there has to be someone else that can help them more than I can. She went on to say that I try more in relationships that most people do. I want to help people too much and often get taken advantage of. She said that my mother wants me to pay attention while driving. Did I mention that I got Worst Driver in my high school yearbook?

She wants me to slow down, and said that my mind is all over the place when I’m in the car. This is probably correct. My grandmother also came through and said that I need to cook more. She wants me to make her 6 hours sauce more and lots more home cooked meals because my kids are too skinny. I wasn’t sure how to tell Gram that two out of three of my children don’t eat! My grandmother was this sweet little old Italian woman, and when you went to her house, you ate. You went hungry, but it was poor manner not to eat.

Gram worried if you didn’t take seconds, and she’d offer to make a whole other meal because she would be afraid that you didn’t like the first one. She was an awesome lady. It also came up that I am the family peacemaker on my mom’s side. None of the rest of the family gets along with each other, but they all talk to me. This is true. I accepted this role from my mother after she passed away. My mother liked everyone, and I do as well. It’s not that I don’t see why they don’t like each other…I do. I just don’t let those things stand in the way of me having a relationship with the family members. I jsut put it aside and be nice to everyone.

The oddest thing said tonight was the my mother-in-law (who has not passed and likely will be alive well into her hundreds just to spite me) really does like me. She said that in some ways my mother in law is jealous of me because she never had the confidence to do anything on her own. That…I just don’t see, but whatever.

The funny thing she brought up was my fear of horses. She said, “was there an incident with horses when you were growing up? I am seeing a wild horse, almost like a stampede.”

When I was a kid, my mother brought my brother and I to some kind of rodeo. I really have no recollection of exactly what kind of even that it was, but anyway we were there sitting in some kind of metal bleachers. This black and white horse got spooked. For some reason, I’m remembering blood, but I’m not sure if I’m making that up to make it more dramatic all these years later, or if the horse got cut on something, then took off running. The horse was bucking and running and ran into the stands where we were sitting, and my mom threw us under the bleachers.

Since then, I have never gone near a horse. We always laughed about it because there would be all these country fairs and none of us would ever want to go into the tents with the horses, we’d just wave to them from afar. It wasn’t a funny situation at the time, but we’d retell it and laugh. We were kind of warped in that way.

I had all sort of Italian people that I never knew come through, but I’m not sure what to think about that. I wrote down some names, and she said things may come to me later. It was an interesting experience. Not really what I expected, but it was fun. She kept saying my mom was really concerned that I need to slow down because of my health and that I should do something fun for myself like journaling. I thought about mentioning this blog, because in a way, that’s journaling, and it’s something that has been so much fun for me to do. Whether anyone reads it or not, it’s a release of everything from my day. I can let it out and relax, which is what I need to do at the end of the day.

It’s crazy windy here right now and all I can think of is Brutus, outside in the wind. I hope I don’t go outside in the morning to find him tipped over. Even the furniture on my upper deck is blowing around. It’s crazy.

Sleep well my friends…and don’t worry…if you’re in Connecticut, I will now be driving a little slower because my mom said so from the grave!

 

 

 

Two Days of Sleep!

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I’m back! Last night was the first night I’ve missed a blog since I started Autoimmune Mama, and I felt pretty darn bad about it this morning. After several nights of being up until 3:00AM and later, I put the kids on the bus yesterday and went back to bed. I slept…and slept…and slept, until 3:00PM. Then I ran some errands, and went back to bend around 9Pm and actually fell asleep.

I can’t really tell whether it’s just complete exhaustion from the insomnia, a fibromyalgia flare, a rheumatoid arthritis flare, or a letdown after my 9 or more days of migraines. Whatever it is, I’ve been so tired that I could hardly get out of bed. I’m not terribly sore, but I’m in such a fog and so exhausted that this morning during my Pilates class I was counting the minutes until I could go back home to bed. I know I’m usually a nap fan, but that’s even a lot for me.

I have to accept that my body is trying to tell me to slow the heck down and that I need the rest. Work has been pretty busy, which is all good. I have a few different freelance jobs and I enjoy all of them, minus one or two clients that are working hard to send me over the edge. As an editor, people love to send you their manuscripts. Everyone wants to be the next J.K. Rowling or Stephenie Meyer in my area of publishing, which is young adult.

I sent this woman some feed back last night, most of which consisted of mentioning that she needed to go through and revise before she submitted it for review. Almost every other sentence began with the word “She.” That’s not so great in a novel. I said it as nicely as possible, and mixed in some lovely comments on what I thought was working in the manuscript.

She sent me back an email defending her choice to use the word “She’ so much at the beginning of a sentence. Well, guess what, that’s her choice! It’s MY choice, not to want to take it on because I think it stinks! Ah…that felt good!

I bet you’re all wondering how Brutus the flamingo is doing! He’s fantastic. My son and I were waiting to get my daughter off the bus today and we were looking at him (my son mistaken called him Marvin!). I remarked…Isn’t Brutus almost like the brother you’ve never had, to which he responded, “you’re weird!”

Anyway, I’m enjoying my flamingo, even if no one else is.

I am shocked that I’m feeling tired again, even though I slept a lot during the day today. I’m also still have the numbness in my fingers and toes…not bad enough to call the doctor yet, just bad enough to be annoying. I guess what I’m trying to say is aside from the extreme fatigue and exhaustion,  I’m holding my own. Somehow I’m getting things done, even if it’s slower that I want.

I’m off to go to bed while my brain thinks I’m tired. Maybe that’s the part I’ve been missing all this time. Perhaps there’s a window of time where I’m tired? Or perhaps I’m in a flare and just darn exhausted! Either way, thanks for listening.

I hope you’re having a good night. Special thoughts go out to Christina tonight. Not sure if you’re reading this, but if you are, love and prayers are with you.

 

 

 

Happy Easter!

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Oh Easter…the candy, the eggs that are still in my refrigerator waiting to be colored because we never had time to do it, the sugar high during church, the guests that were supposed to arrive for dinner at 2pm that showed up at 3:40. I could go on…and knowing me, I probably will. It wasn’t a bad Easter, though. For the first holiday ever, my kids got up at 6:15AM. Usually it’s me, waiting for them to wake up and open things. This year, I wanted to sleep.

Remember that plan last night about not taking the half of an Ambien? I totally didn’t stick to the plan because I decided that it was best that I fall asleep early and get some real sleep because I haven’t been sleeping at all lately and I wasn’t tired. It was blissful as I realized that I was falling asleep. I shut the computer off before I sent any emails or made any purchases that I don’t remember (at least I think I did). I felt myself drifting off to sleep, which is a feeling that I love.

Having insomnia really sucks. You desperately try and have that feeling of falling asleep. You look for it. You try too hard to feel it, and it doesn’t come. You just can’t make sleep happen. Actually, I know a few people who can…I don’t like them. Mostly because I’m jealous! I so enjoy those moments when I know I’m drifting off. It’s true peace. There’s no pain, there’s really no feeling at all. It’s just kind of a nothing. Maybe that’s why I like it so much.

Anyway, I enjoyed my nothing, and I paid for it in the morning when my kids woke up and wanted to hunt for eggs at 6:15. I don’t think I even remember the egg hunt. I watched them open their presents…no I didn’t do baskets. That crap isn’t for me. I just do two little things each kid and a candy. My middle daughter made the biggest deal in Target about this carry-on suitcase that she had to have. The kid was thrilled when she unwrapped it and even more thrilled when there was stuffed dog inside. She’s so practical…totally doesn’t get that from me.

The little one has a list a mile long of toys she wants (that one takes after me). She got this princess pet cat thing and a Lalaloopsy thing, and my son got a Lego thing and a box of baseball cards. All kids were happy, and mom went back to bed for an hour (happy mom).

The rest of our day was pretty casual. I had dinner here, but it was a small, late crowd. This type of thing normally would have sent me over the edge. I don’t like tardiness, especially when I’m cooking. I guess because I didn’t put a lot into the meal this year, I just let it all roll of my back and didn’t let it bother me as it usually would have. My potatoes were a little over done. My salmon would have been better if it was served 20 minutes earlier, but none of it was bad. Well, okay my chocolate pudding pie was a freakin disaster! I usually making the chocolate pudding part the night before, but I ran out of time last night so I made it after church.

I waited about 2 hours and then put the fresh whipped cream on and when I served it, it was like soup. Not even that bothered me. It was darn yummy soup and there was plenty other desserts that people could choose from.

At the moment, the only thing that’s bothering me is a headache that started a few hours ago. I just haven’t been right since those darn trigger point shots. I’m going with “never again.” I had really high hopes, and it’s possible that it doesn’t have anything to do with them, but it’s very coincidental that so soon after them I’ve been feeling like this. I’ve really only had a handful on headache-free days since I’ve had the shots, and my neck has been full of knots (which it was supposed to loosen).

The numbness in my hands and feet is also becoming more of an issue, but I’ve decided to continue to ignore that until my next rheumatology appointment, which is in June. If it gets significantly worse, that’s a different story, but as long as it stays the same, I’ll put that on my “worry about it later list.” Anybody else have one of those? I decided to start one in an effort to stop taking on the weight of the world.

I know I tend to take on problems all at once and worry about way more than should. This is my valiant effort to try and tackle what I can, when I can, and take some of my worries and put them on the list to worry about them a different day. I’ll keep you posted on how that works out. If I start rambling about crap I shouldn’t be worrying about…don’t forget to remind me about the list. Please!

I hope those of you that celebrate Easter had a wonderful holiday. It was sunny here, but still a little cold for me. My hands are still ice cubes. I’m under my electric blanket and 6:45 and our school morning routine is going to come WAY too early. My only saving grace is that it’s Monday and I can get back in bed and take a nap once the kids are on the bus. YAY ME!

 

 

 

Welcome Brutus!

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I did it! I went back to Home Goods, and I bought the flamingo! His name is Brutus and he was a bargain at $39.99. He is pictured above in the driver’s seat of my car. My neighbor and I had a little fun with him when we went to pick him up. We giggled the whole way to get him, the whole time he was in the cart, and the whole way home. It was quite the excursion, and I now have a 4-foot metal flamingo in my yard, under my cherry blossom tree. He’s magnificent. He makes me laugh and he was a bright spot in a day of cleaning and getting ready for Easter.

Today was a much better day in terms of pain. I was able to get a lot more done than I did yesterday, with far less pain. It certainly didn’t hurt that it was fairly warm and the sun was shining. The damp cold of yesterday was gone. I’m finding that when it’s that damp kind of cold, those are my worst days. I can’t get warm and my joints are at their worst.

I’m really unprepared for Easter, but it’s not bothering me too much. I usually have a bigger crowd, so tomorrow just seems like a regular dinner. I’m not going all out. I have more people coming for dessert than dinner, so I have more of a plan for that. At the moment I’m realizing it’s 11pm and I don’t think I have anything to wear. I thought about things to put on the table to make it pretty, but heaven forbid I think of anything to put on myself. I remembered to buy the kids nice outfits…yeah, at some point I’ll remember I need to dress myself!

I still have to put candy in the plastic eggs  and hide them, but my son was still pretending to be asleep about a half an hour ago so it wasn’t quite safe yet. My youngest daughter came into my room a few hours ago fearing that she might have seen Santa in the window. At that point I was pretty sure I failed somewhere along the line in my parenting, but it still gave me a chuckle.

I have been having a really tough time with insomnia the last few nights. Last night I was up until about 3AM. I haven’t taken much because I feel tired, but I’m just not sleeping. I have been working on an online auction for a nonprofit organization that I work for and it’s been fun. I have been seeking out  companies for donations for future auctions, and for some reason I choose 1AM as a great time to do this. It’s my quiet time and I can focus, but it’s not so good for my sleep patterns.

I’m going to try and be finished with everything by 12:30 tonight and actually shut the computer off. We’ll see how that goes. I really don’t want to take a half an Ambien tonight because I don’t want to be groggy in the morning. I think my mind is just going in a million directions. I really like my job and I am having fun with what I’m doing, so I want to do it. I have had a lot on my mind the past few weeks with my family. My father went from definitely going to have heart surgery, to now not needing it in the matter of two weeks.

Like everyone else in the world, I just have a lot on my mind. Is there ever a point where we don’t have a lot on our minds? I’d like to get to that point of boredom! I’ve been doing a little research on neuropathy and it’s making me a little nervous as well. I keep losing all feeling in my fingers and toes. The just go numb or I have pins and needles for a long period of time. If anyone else has this, I’d love some insight so I can keep myself away from WebMD. You’d be surprised the things I think I have 🙂

For those you celebrate Easter, I wish you a peaceful and happy holiday tomorrow, and to everyone a pain-free day!

 

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.

 

 

Go Away Raynaud’s

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Yes, I understand that medically it’s mostly just an annoyance, but dammit, my hands are a translucent white. They are freezing cold, and they hurt so bad they sting. I have pins and needles that feel like someone is jabbing little pins into the tips of my fingers when I run them under warm water to try and bring them back to a normal color and temperature. It’s more than an annoyance, it hurts.

It’s April 17th, I have my electric blanket on, my heating pad on my lower back and I keep alternating placing my hands onto the heating pad for extra warmth. It’s frustrating.

Today was a really busy day, and I probably did too much, yet I’m still wide awake. I started the morning teaching my class, but it wasn’t my best one. I didn’t have my best energy level, and my body started off pretty stiff and sore to begin with, so it was difficult to get going. I brought the kids to a trampoline park for an hours after my class, but this time I didn’t play along because none of my friends were jumping. I have to admit being a tiny bit disappointed, but it’s probably for the best because I’m not feeling that well.

We came home and I needed to catch a quick nap, which was all of thirty minutes, but I could hardly keep my eyes open. The fatigue has been pretty bad, and I also upped my Topamax to 100mg, and I remember that the fog and sleepiness from that usually takes a few days to get used to. The good news is that I haven’t been as hungry, which is kind of nice. I was down 4 pounds, but let’s be honest…I’m down for pounds from my highest weight ever so that’s hardly a celebration quite yet. I have just noticed overall, I’m not hungry between meals like I was before, so I’m not doing as much snacking….BONUS!

The highlight of my day was my daughter second voice lesson. Yes…I am that mom that cries at everything. I cried today as she sang Do You Want to Build a Snowman from Frozen. It’s not like I haven’t heard her sing it a million times around the house, but with some coaching on hold the notes and breathing, I couldn’t believe how she sounded. Just hearing my baby sing was so awesome.

I already know I’m not going to be able to sit through every lesson because I’m going to be that mom who cries, but if that’s the worst she can say about me at the moment, that’s not so bad.

Tonight I also met with our town’s Board of Finance Chairman. It was different than I expected. While I didn’t agree with everything he had to say, I rather liked him. I have learned that it’s always best to get your information straight from the source rather than from other people in the town. While I’m antisocial, I have sat down with the First Selectman, and had conversations with the superintendent, and the Chairman and other members of the Board of Education. Instead of running with the angry crowd, I’m getting my own information.

Do I agree with the angry crowd on some things, yes! Do I agree with the Board of Finance on other things, yes. Does this make me confuse…it sure as hell does. I am a middle of the road kind of voter. I am socially liberal, but when it comes to money I go back and forth depending on the issue. There are a lot of government programs that I think do amazing things. BUT…there are also some government funded programs that are a waste of money. There are many senators and congress people who don’t earn their salaries.

Anyway, I feel pretty good that I at least have listened to all the sides. I’m not sure who to believe on some things, as they are both citing very different facts. I’m sure the truth is in the middle, but I do feel that the man I met with this evening gave me a lot more to think about than I have heard in the past. I’m just trying to stay involved. I am one of those people that never really got involved in this stuff, and I’m trying educate myself.

Have a good night everyone!

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!

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