Blogging Is Hard

 

I’ve written about 10 blogs since my last post. Most were about how hellish it was waiting for my genetic testing results. I decided they were all too boring and never posted them because I was whining. They told me the tests would take 3–5 weeks and I tried to be optimistic, which is not my strong point. I told myself I’d get the call in 3 weeks…then 4…then 5. Then I called to see if there was a problem, but nope. They just weren’t back yet.

Seven weeks later I got the call while I was teaching a class but I saw it was the hospital and answered it anyway. Happily I can report that my genetic testing is fine. I did not have the BRCA gene mutations or any of the other mutations they tested for. This was a HUGE relief.

I attributed my horrific anxiety to the waiting. Though I can’t say it was on my mind all the time, I figure subconsciously it was adding stress. I was waking up with panic attacks and that panic feeling would last all day unless I took a Xanax. I tried everything. Running (well as much as a girl with rheumatoid arthritis can run) did help.

I have one of those Couch to 5K apps and though I’m at a point where the running intervals are too long for me, I still keep going , or at least I was until the last two weeks. We’ve had temperatures over 90 every day and running doesn’t even remotely sound like fun. Instead, I spend 30 minutes swimming laps (again…RA girl, not a strong swimmer, sometimes with a damn pool noodle but kicking my legs the whole time and moving my arms). It’s enough to get my heart rate up and I’m doing something.

Even with that and the relief of my genetic testing news, I’m still struggling with my anxiety. I’ll hear the smallest thing and that will be it. Or sometimes it’s nothing specific and it will just come on out of nowhere.

I’ve been into my essential oils. I don’t want any of my doTerra friends to jump on me here because I love my doTerra oils, but I’m a broke girl…I found a few blends online that I have been diffusing that I think have really helped with my anxiety and they are like $4. I do think there is a correlation between scent and the mind. It doesn’t take the anxiety away, but it helps me.

My vent of the evening is probably one most people have at the moment. Have you had enough of people arguing politics on Facebook, Twitter, etc.? I try to stay out of it. Our country is in a scary place right now and I try and listen with an open mind when people talk. I can’t stand people who are so far in either direction that they can’t have a conversation and listen to someone else’s views. If that’s you, you are part of the problem. We need to get back to being able to listen and disagree without all hell breaking loose.

The Internet changed that for us. Memes changed that for us. We never had Bush/Clinton?Perot memes, but boy some of those would have been funny.

I have one Facebook friend who endlessly posts anti-Muslim things. I try to understand where it’s coming from and it’s a place of fear. She’s afraid for herself, her family, her country. I understand the fear. I don’t understand blaming an entire religion when we have many Muslim Americans fighting in our military against ISIS.

I don’t know that I’ve ever been political on this blog. I’ll probably get a slew of mean comments, and I guess that’s okay. People have their strong beliefs on what needs to be done. I’m one of those people that is somewhere in the middle. I think we have two crappy choices and need to decide who will be the lesser of the evils.

Maybe they are both great people. I am just not sure I think someone who gets into a 7 or tweet Twitter war with a celebrity in charge of when we declare war. On the flip side, there are huge trust issues with Hillary and I’m not sure she brings the kind of strong arm protection we need as a country right now.

What I’m trying to say is I have no freakin idea and I’m going to watch each and every debate. But anyone who thinks they are changing someone’s opinion with a meme on Facebook, I’m sorry. You are making yourself feel better about your decisions. That’s all.

So RA? How’s that? Well me sed rate is down. My C reactive protein is down so all that is good. Overall I feel well. It’s the summer. I do better in the warmth. I can swim, which helps. I have had a few days of stiffness and pain where I’ve needed some pain medication, but very little more than muscle relaxers and Alleve. I’m counting my blessings and taking the reprieve from the intense pain for as long as I can.

I hope my autoimmune friends are all doing well too!

 

Is It Depression or a Funk

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

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

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

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

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

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

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

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

 

 

Another Flare?

I’m staying off WebMd today. I woke up with a fever. I don’t feel too bad, though. I have a scratchy throat, but it’s not really too sore and I have that “I’m coming down with the flu” type feeling that accompanies a flare. I had a 101 fever this morning and I took some Advil to get through. Other than that it wasn’t a bad day, though I’ve been slight obsessing on all my research with the thyroid stuff.

I need to make some calls tomorrow to see if either I can make an appointment with the endocrinologist or if I still have a fever, maybe make an appointment at my primary care doctor’s office even though she’s away. I may get into the endocrinologist’s office faster if they call in the referral directly from the office. Other than that I have my rheumatology appointment on Tuesday and I’m making my list of things to go through with my doctor.

For the majority of the day I felt pretty well once I took the Advil, but this later in the day things went downhill. My SI joint is killing my (the little bones above your butt). The right side is completely locked up and I have pain all through my right hip. I also have a lot of pain in my hands and feet. I guess if I had to feel lousy, right before I go to the doctor is the best time to have that happen. There’s nothing worse than feeling wonderful when I go to see the rheumatologist after weeks of feels horrid.

I am trying to look on the bright side of feeling like crap. Is there a bright side? I’m not even sure but I’m working on finding one.

I have less than a week until my son’s birthday. Did I mention that my mother-in-law is having “her” cake person make the cake because my son likes her cake person better? Um…really? It’s cake. We usually get a cool cake for the kids and she has someone that makes them. Someone I went to high school with started her own cake business here in town and I like to give her the business and she does a fantastic job. At my daughter’s birthday she leaned over to my son (this was in March) and said, “I know you like my cakes better so decide what your theme is and I’ll get you a cake.”

First of all, I was going to get his cake at the grocery store because none of us really like fondant. Both her lady and my friend make beautiful cakes, but the crazier the styles, the more they have to use fondant. The last cake my friend made with the cats on it, I asked her to only make the cats out of fondant and that was good because no one ate the cats (I don’t even eat Easter bunnies, let alone fondant cats).

I am keeping things low key this year and we invited the family over for pizza and cake Friday night. I need to get my house in order for Friday. A few weeks ago I seemed to have more patience for them. It’s wearing thin, though. Maybe that’s true for everyone. I’ve been fairly cranky. I’m just wondering if there will come a time in my life that I won’t feel like the odd one out when it comes to my in-laws and even in most social situations. I often feel like I am on the outside, but that’s definitely true with my in-laws. I often wonder what type of person they would like because it’s certainly not me.

Anyway, I’m off to try and get some sleep so I have the energy to start cleaning the kids rooms tomorrow.

 

Been Diagnosing Myself Again

Usually I’m the first to admit that I spend way too much time on the Internet researching my illness, but in many cases I’ve been 100% correct. Case in point, my infertility years. I read every possible thing I could get my hands on about miscarriage and ovulation and medications to make you ovulate. I diagnosed myself with PCOS despite not being glucose intolerant and went into the reproductive endocrinologist to explain my diagnosis. He agreed with me. Why? Because I know what the hell I’m talking about!

So I starting writing a blog the other night after seeing my ALS Ice Bucket challenge video. I was very upset seeing myself on video. Do I look horrid? Well, no, but I don’t look like me! My face is so puffy and I’m way overweight. All I could think about was that everyone must be thinking–wow, she didn’t age well since high school. Should I care? No! Did I? Kind of! I don’t Photoshop my pictures to impress anyone. I’m a fairly simple girl. I just want my regular clothes to fit. That’s all!

So I started writing the blog and it got me thinking about my appointment this coming Tuesday with my rheumatologist and how I need to prepare. Overall, my pain level has been significantly better in the warmer weather. I’m going to discount the week in Disney when I completely overdid it and sent myself into a terrible flare (I will come back to that in a minute, though). My main concern is the exhaustion. Lately, I will go teach my Pilates class in the morning, and I can hardly keep my eyes open on the way home. I get home and sleep for 1-2 hours, and it’s not a light nap. It’s a deep sleep, so deep, in fact, that I don’t hear the phone.

It’s pretty much the same scenario if I run to the store. I need to rest afterward. This just isn’t normal and it is getting worse instead of better. Now I’m not naive enough to think my pain level is going to stay this way when it gets colder, and I want a plan in place to deal with the winter. I can’t do another winter med-free, or periodically using pain meds. It was awful. I also don’t want to use Lyrica or Cymbalta because of their side effects of weight gain.

Given that weight gain is a big concern for me, when they both have a side effect of severe weight gain, that’s not a road I want to go down. Now gabapentin had less side effects, but I got off course while looking that up and started reading more about thyroid issues and Hashimoto’s Disease. Now my thyroid levels were in the normal range, but I happen to exhibit every other symptom of hypothyroidism. Chronic hoarse throat/laryngitis, severe exhaustion, weight gain, hair loss, sensitivity to cold, joint and muscle pain, puffy face, muscle weakness…HELLO…This is me! Going back to my Disney trip when I ran my body ragged, as I started to feel the pain, I lost my voice…completely. I couldn’t do anything more than whisper for our last two days, and then I came home and slept for 3 days straight before getting and antibiotic that was called in for a sore throat/sinus infection.

Now I need to convince my doctor that there are different ranges of normal for TSH, T3, and T4. Hashimoto’s is actually an autoimmune disease that affects the thyroid causing hypothyroidism. So then I thought, what if I don’t even have RA because I’m non-serum RA and what if my correct diagnosis is Hashimoto’s and fibromyalgia? No one is arguing an autoimmune disease. My ANA level is high. I’m sure my rheumy with do more blood work after our chat this Tuesday. I don’t actually think there will be much he can do for me, so in the art of working around him, I’m calling Monday to make an appointment with an endocrinologist.

I was feeling positive with this new direction and I figured, let me check with my aunt to see if she knows of any family history. I seemed to remember something about my grandmother taking thyroid medicine. Well, she just got back to me and as it turns out both my grandmother and my uncle (my mom’s brother) had/have hypothyroidism and my grandmother had all of the same symptoms I do. I don’t know why this made me cry. I read it after I pulled into my driveway and turned the car off and I sat there for a moment and cried.

Maybe it’s that connection. Maybe it’s that I could be on the right path to figuring out this awful autoimmune puzzle. I think I have my work cut out for me to get a doctor to treat me, even if I’m borderline, but I’m sure going to try! I will have to see how my bloodwork from this week comes out. Any recommendations on thyroid bloodwork? I’m not really on meds that would affect it. Should I go first thing in the morning? Also anyone with Hashimoto’s, please feel free to leave a comment letting me know some of your symptoms and if you were misdiagnosed in the beginning. There’s always the possibility that I have RA, Fibro, and Hashimoto’s…let’s not go there yet.

I’m focusing on the positive of having something to discuss with my rheumatologist and perhaps a new endocrinologist. I’m not stopping until I get some answers.

 

Happy Almost Anniversary

Tomorrow is my 15th wedding anniversary. Did I mention my husband is away on a business trip (aka vacation)? So 15 years ago tonight we were actually fighting–that should have been a clue, HAHA! My in-laws were an hour and twenty minutes late to our rehearsal. This wouldn’t have been a big problem, but they had the priest with them, so we couldn’t even start the rehearsal without them. Picture it…40 people in an unairconditioned church in August, sitting there waiting for my future husband’s two sisters and his uncle (the priest). They left their house at 4:45 on a Friday to go pick up the uncle in the opposite direction of the church, and then head back a few exits and a few towns over in Friday 5pm traffic. I guess 15 minutes seemed like enough time…

Anyway, it wasn’t pretty. I had words with them, and I was annoyed with his parents for not telling us they were able to make it to the rehearsal. Though they had a good reason, my husband’s grandmother was being released from the hospital, a little communication would have been great. My wedding was fun, despite the fact that one of the sisters wasn’t speaking to me. It was a good, expensive party.

Today was a big day for me. I had my gyno appointment that I’ve been very stressed about. It went pretty well, but it’s only half over. I still need to go for my ultrasound, which they are doing on the same day as my mammogram (let’s just refer to that as my day o’fun) in mid-September. The good news is that my doctor said everything felt normal, even if it didn’t feel normal to me. She also said that my primary care doctor was incorrect and that I’m not beginning menopause because I’m on birth control pills, which is controlling those hormones. So…menopause is not the reason I’m as big as house. We’ll cross that off the list.

My son started football this week and because our town is busy ripping up and putting in a new field for the teams to play on, the boys are practicing at the high school. This actually means I have the track right there in front of me and I can force myself to walk. Tonight I walked almost three miles and it felt good. I notice that I do have tightness in my lower back and my hips, but I’m hoping that the more I’m able to do it, the better it will get.

Tomorrow also starts my last Wizard of Oz weekend. I am gearing up for it, or at least trying to because I may end up having to stay until the end of the show all three nights. I hope you can feel the excitement through my typing. Don’t get me wrong. I get teary and giddy every single time my daughter performs. I could watch her all day, but she’s on stage for about 8 minutes of a 2.5 hour show. I’m old and tired.

 

Panic Attacks Suck and Other Deep Thoughts

I’m having a panic attack. It’s worse than my usual panic attacks. This one started a good 20 minutes ago, and has gotten progressively worse. I’m not exactly sure what brought it on. It hasn’t been the best week. In fact I’ve written about 4 blogs, but haven’t published one of them because I thought they all sucked.

It’s just one of those weeks where nothing I had to say seemed like it held a candle to what the people around me were going through. On Thursday a friend from high school lost his 11-year-old son in an ATV accident. I made the mistake of looking at his wife’s Facebook page, and I haven’t been able to put it, or her, out of my mind. I can’t imagine anything worse than losing your child.

She put up a frantic post that the boy was missing and asked for people to help her search. That was followed by people praying and others who had faith he’d be okay. But he wasn’t. It’s hard as a parent not to immediately think “what if”? I want to reach out and do something, but really what is there to do? Of course, I’ll make a dinner and offer to do whatever I can, but they lost their child. Realistically, nothing is going to help them. Their lives are never going to be the same.

This whole thing really sent me into over-protective mode. I’m kind of neurotic anyway, but that “what-if” fear is present and I’m having a tough time quelling it. We also lost a family friend to brain cancer today, but that situation, although very sad, is a different one. He was young…younger than me, but he was suffering terribly. He left behind a young wife and a two-year-old so my heart obviously goes out to them. Just a lot of sadness and loss this week.

That makes the fact that my son knocked a lawn chair into the pool and ripped the lining causing a massive leak into my yard seem pretty darn small. But we still had to deal with the chlorinated lake in the yard and the one foot left of water in the pool with the leak. Good times!

There’s a lot going on, but I can’t even tell what it was that sent me over the edge into a panic attack. I was sitting in bed looking for dresses for my daughter’s vocal recital next weekend. I wasn’t aware that we needed a fancy dress, but the girl she is singing a duet with has a very fancy dress. Her mom showed me a picture today…it was like a Christmas dress. All we were told was they need to dress in black for one portion of the concert. I didn’t think we were going formal, but I can’t have my daughter in a cotton dress with her kid decked out in sequins and satin.

It’s so silly that something like that was the straw that broke the camel’s back. Sometimes it’s the last thing in a string of things overwhelming you that does you in. My body is fighting the exhaustion. I know I need to really rest at some point tomorrow and Monday to get through an emotional week of wakes and funeral services. I don’t do well with those. Who does? But especially the funeral of a young child…the same age as my son. Not going to lie…that’s going to be just plain awful.

It really puts my autoimmune issues in perspective. I often feel like crap, but my kids are healthy. I’d take that any day. I’m still having hip and back pain, but overall since I’ve upped my Celexa, I haven’t had a panic attack like this. I took a Xanax. Ok, I took a Xanax and a half. It was that bad. I’m just starting to feel it kicking in and the headache that was starting is beginning to subside.

If you are the praying type, I’ll ask that you send a prayer or two for my friends’ families. They are all really good people, and somehow, someway, I pray that they find some peace. If you’re still reading, thank you for letting me unload a blog that was mostly about other people tonight. I just needed to get it out.

And for a bit of humor to leave you with, the picture on top of the page was something I found tonight while going through some papers from my 7-year-old. The last line was suppose to read, If You Give a Pig a Pancake, but she spelled IF wrong. I covered the rest of the text to show you what I saw when I first looked at it. It was the best laugh I had all day.

And Back to Insomnia

I have been taking Melatonin fairly early in the evening and it’s been working pretty well for me. I’ve been falling asleep around 11pm or so most nights. I forgot to take it tonight because I was bust being a mom and trying to help my son cope with a “friend” being mean to him about his baseball ability.

Okay, it’s wrong of me to say, but I’d like to punch the kid at the moment. My son is not the star athlete. He’s not going to be the next Derek Jeter, but he loves to play and he tries very hard. He also improves a great deal from year to year. This year his hitting is light years above where it was last year. I used to cringe and pray every time he’d get up to bat. This year I no longer cringe, but I still pray. He’s hit some darn good balls!

From what his father tells him, baseball is 75% mental. He needs to go out there with more confidence, and he just doesn’t have it. Not only in sports, but in life. He lacks confidence in most things. It’s a constant struggle and one he sees a therapist for. Anyway, my son really wants to fit in with these cool athletic kids. My husband is good friend with one of the dads, and my son just automatically assumed that would make him best friends with the sons. It doesn’t work that way.

And guess what, I’m not so disappointed they don’t want to be his best friend. They are great friend material! Friends don’t tell other kids you suck at baseball. Friends don’t say mean things about you to other kids. Friends don’t make fun of you. My son’s instinct was to want to get this kid in trouble, and we tried to talk to him out of that. He’s in fifth grade and the tattling stage needs to end. The best revenge is for his to go out there on Thursday, nail a great hit, look the kid square in the eye, and say, you still think I suck? And I suggested he say it right in front of the boy’s dad who is the assistant coach! I also suggested his father (the coach) talk to the team as a whole about talking about other team members, without specifically calling anyone out.

Obviously this kid knows what he did, and he’ll get the point without causing any repercussions for my son. My son doesn’t understand the repercussions part of it all. Anyway, this took up a large chunk of my evening, and then cause me a lot of stress after the kids went to bed because I blame myself for everything. I’m not sure what I could have done differently to make him a better athlete, but whatever…I’m sure I did it.

Regarding my autoimmune life, today sucked! Not quite needing the cane suck…but for the first time ever my elbows are getting so stiff that it hurts to straighten my arms. My hips are still in quite a bit of pain, so I’m slower than usual, but I’m moving. It’s frustrating, but we just had some really crazy storms move through CT, so I’m not sure if that played into it all. The arm thing was bothering me today because that’s a brand new symptom. My arms have never bothered me. It usually my hands, feet, and hips. I don’t want to add another body part into the mix!

Tomorrow I’m looking forward to a morning of being able to put the kids on the bus and going back to sleep for a nap. It sounds so silly, but it’s been a while since I’ve been able to do that, and the end of our school year is coming. I need to get my naps in now! Hopefully this insomnia won’t keep me up all night and I won’t sleep the day away tomorrow. If I’m feeling up to it, I’d like to get out even for a quick walk. Something is better than nothing, especially since all my cheating over the weekend only brought me a one pond weight loss. Very disappointed! I need to step up my game! Adding exercise back into the mix is the only way to do it. I just need to make sure I don’t overdo it.

Until tomorrow…

 

People Just Don’t Understand RA

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

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

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!