Yes, I’m Alive

8616627167_b7b5307fa7_nI’ve started  several posts but last week was complete hell. I had a terrible migraine that began a week ago Sunday that was so bad I lost my vision and ended up spending the evening vomiting and feeling like my head was going to explode. Then when so much time had passed, it was difficult to come up with a blog to recap the entire two week span.

Do I go through everything? That would bore the crap out of you! I’ll give you the brief overview. My kids went back to school on August 28th. Everyone liked their teachers, even my son, who heard from some neighbors that his literacy teacher was “the meanest teacher ever.” Of course to my anxiety kid, this caused some tears, but I am happy to report that so far it’s going pretty well. She might not be his favorite teacher, but she’s not bad.

Both girls love their teachers. My oldest daughter got the teacher that she really wanted, but all of her friends…and I mean all of them, were placed in one other class. There were a few tears when she learned that she wasn’t with her friends, but she has met two nice girls in her class and she loves her teachers.

The youngest one took one look at her teacher and knew she was going to be perfect. She said, “Mom, she is so fashionable. She wears lots of accessories and pretty scarves!” I had the chance to meet her last night at the second grade Open House and she was really great. She had the right balance of fun and firm. I can see her not tolerating any misbehavior, but I can also see her really getting down and having a great time with the kids. She seems like a great fit for my youngest daughter.

The girls also started dance this week, which is always fun. They are preparing for their Nutcracker audition on September 19th. It’s always a big deal, but my older daughter is at that in between age where there really isn’t a lot of great roles. She is practicing with a dance teacher hoping to be in either the party scene or to be a flower bud. I’m more stressed than she is.

In other news, I still feel exhausted. I’m still needing to nap periodically throughout the day. It’s still frustrating. I’ve added vitamin D into my diet as directed by my doctor, but I haven’t felt much difference. I’m seeing the endocrinologist on 10/9. I spoke to a friend with Hashimoto’s today and she mentioned that the only real way to diagnose Hashi’s is through a thyroid biopsy. To be honest, I’d feel better with that. I don’t want to base everything on one blood test. I think I’m almost happy to ask for a biopsy. I want answers. I’m huge…enormous. I’m not eating enough to be this enormous. I need to figure our what the heck is wrong once and for all.

I’m hoping they do that. For now, I’m going to start walking every day when I can. It’s hard when your body is saying to nap.

Anyway, I am sorry about the long time between blogs. I hope you didn’t miss me too much. I’ll be better about blogging now. I am back on somewhat of a normal work/school schedule.

 

 

Another Day with No Answers

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I’m not going to lie. I’m pretty disappointed that I didn’t hear from my doctor today. The lab technician who drew my blood said all the lab results would be back by Friday, so I wait until about 1pm and called the office. I was directed to the nurse to get the results and I left her a message and didn’t hear anything back. I could take that in a couple of ways. #1. The results didn’t come back yet (unlikely) #2. The doctor didn’t have time to actually go over the results #3. The results we abnormal and the doctor wants to speak to me himself; in other words the call would be more than a nurse telling me everything looks good.

So which one am I going with? Of course it’s #3. I want them to find SOMETHING. I feel like hell. I could sleep all day and still be tired. The thing is, I’d be lying if I said I wasn’t a little afraid of what they might say when they call me. I do have the whole cancer at 42; death at 43 thing going on in the back of my head. I keep telling myself, though, that I just don’t think it’s that. I really think it’s something to do with my autoimmune issues, but I need some answers.

Since I did call my regular doctor and leave a message before seeing the on-call dude, she called in a referral to an endocrinologist. I missed their call to schedule and appointment, but when I called today they told me I needed to call again on Monday to schedule it. There is still the chance (and it’s a big one) that all my tests will be normal and I’ll leave this round of testing once again with no answers.

Instead of falling into a depression about feeling like crap and still having no answers, I’m going to already have an appointment with an endocrinologist lined up for a second opinion on the TSH and thyroid tests. Isn’t it sad that I’m already banking on my back-up plan? There is a part of me that got upset earlier that no one called, and I started to panic about it being a bigger issue. I just like to know. I am a researcher. I want to know what I’m dealing with and research everything I can find on it.

It’s doubtful I’ll hear anything until Monday. So I need to try and put it out of my mind (good luck with that) and move on. We had my son’s little family birthday party this evening. It was small and quiet. My in-laws and my dad and step-mother came over for pizza and cake. It was a decent event, considering how some in-law events go. I thought my brother-in-law was going to lose it when my mother-in-law mentioned that one of my three-year-old nephews needed to do sit-ups to lose weight. Um…he’s three. He’s fine! I was actually proud of my brother-in-law for standing up to her and saying that he won’t allow her to create self-esteem issues in his children. I was also pleased that I wasn’t involved.

Other than that, it was a nice little get together. I’m exhausted from cleaning the house and getting everything ready today. I don’t think I’ll be able to sleep in because I have my niece and nephew here tonight, but I intend to take a nice nap once they leave at 10:30. At the moment I can hardly keep my eyes open with no sleep aids. That in itself is crazy, but I’ll take it.

 

Memorial Weekend Recap

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Truth be told, I wrote a really long blog on Saturday night. It was an Ambien rant and I must have fallen asleep before I hit publish (lucky for you). It was filled with typos and it went in several different directions, but I think my topic of choice was really on friendships…and that my son fell out of a tree…and off of a basketball hoop. Let’s just say, he was an accident waiting to happen on Saturday and I was contemplating covering him in bubble wrap to make it through the parade and picnics on our agenda for Sunday.

Saturday and Sunday were very tough days for me in terms of my RA. I woke up Saturday and could hardly walk. I ended up going to a friend’s son’s First Communion party and then bailing on an anniversary party later that evening because I could hardly stand. This left me with a predicament for Sunday. I wasn’t walking well, and I had a lot of walking to do.

For the first time since my foot surgery over a year ago, I went out in public using my cane. This was a huge ordeal for me. As I have mentioned, despite my decision to blog about my autoimmune disease, I am an intensely private person. I don’t like to let people know how much pain I’m in. I’m completely fine unloading on my blog to people who are reading a blog about autoimmune diseases. I’m guessing you got to my blog because you either suffer from an autoimmune disease yourself, or you somehow found the blog post with the picture of my beautiful lawn flamingo Brutus, and got hooked. Either way, you’re here!

I packed the girls into the car (my son was marching with his football team) along with a blanket and a folding chair and my cane and we were off. I fought off a slight panic attack as I was getting out of the car, and told myself to grow up and that I was making a big deal out of nothing. The reality was I just didn’t want to answer questions. It had very little to do with the cane itself, it was the endless conversations and stupid questions that I truly was trying to avoid. Okay, and I also didn’t really want the looks of pity either. Honestly, I’ve been doing great lately. The past two days completely sucked, but the three weeks before that were great with hardly any pain at all.

I started my trek with my cane and had to keep reminding my daughters to slow down. My friend saw me when we were approaching our usual parade spot and she grabbed the chair from me and asked how I was doing. She didn’t make a big deal out of it, and simply helped me set up my chair and started chatting. I have good friends. They know me well enough to know that I don’t like fuss.

Worse than the parade was walking into a big inlaw party with my cane. I swear the funniest moment was when my mother-in-law said “oh, my! What Happened?” and I responded that it was just a bad day for my rheumatoid arthritis. She then said, “Oh, I didn’t know you had the same thing I do?” To which I replied, “I don’t! You don’t have rheumatoid arthritis. You have osteo-arthritis.”

Oh the fun that is each and every time I get to explain it. And it’s not like we haven’t had the conversation before. One night when I’m annoyed, I’ll tell you about the time she asked why I never told her that I was adopted (keep in mind, it was news to me that I WAS adopted as I had no freakin idea what she was talking about). That was one of my favorite conversations ever.

Anyway, I survived the events with my cane. No one made a big deal about, which was good. I also decided that I am way too cool for a boring cane. If I am going to have to use a cane now and then because of my hip, I need one that looks like a flamingo. I’m totally on the case to find one. I found someone who has a supplier that will design one to spec. I think I’ll just feel better about the whole thing if I have a crazy cane.

Today was a better day. I didn’t need my cane at all, and I had the excitement of cleaning my house. I spent all day cleaning and it still looks messy to me.

I’m a little worried about my self-weigh-in tomorrow as I did a bit of cheating at the picnics this weekend, including a piece of chocolate cream pie and a cookie. Overall the damage could have been MUCH worse, but I don’t know if I’ll make the three pounds I was hoping for. Right now I’m praying I didn’t gain anything.

I hope you all enjoyed the long weekend and took some time to remember why we celebrate Memorial Day. Thank you to the men and women who gave their lives for our freedom and to those who continue to fight for it.

Cut the Aspartame Now

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If you’ve been following my blog, you know that I’m working on the whole gluten-free diet thing. I’m not counting today, as I ate fast food and I feel like hell from it now. Tomorrow is back to gluten-free!

When I was researching things to help my fibromyalgia pain, I kept seeing articles on the links between aspartame and chronic illnesses. About two years ago, I was in a hellish cycle of migraines, and my brother-in-law, who is a neurologist, asked me how much diet soda I was drinking. The answer even bothered me. I couldn’t remember the last time I had a day without my diet soda.

At that point I’d have done anything to be headache free and I gave up diet soda cold turkey, The first few days were rough, but then I didn’t miss it so much. Little by little it crept back into my diet about a year ago. Not a lot, but every now and then I’d have one.

I started looking more into the artificial sweetener aspartame when I read an article on how artificial sweeteners can make you actually crave sugar. I needed something to blame being fat on, so I jumped on that bandwagon. Through more research, I also found that aspartame can make many chronic illnesses worse.

Among the adverse reactions people can have to aspartame are joint pain, dizziness, migraines, weight gain, anxiety attacks, depression, insomnia, fatigue, nausea, vertigo, muscle spasms, and irritability. Um…a great big yep there. I think I have had all of those at one point or another.

It’s kind of a cycle. I was feeling tired and fatigued, so I’d have a diet soda to give me that caffeine kick. Little did I know the aspartame likely making my problems worse. I also read that aspartame could be causing fibromyalgia. While I don’t consume enough of the stuff to believe this is the cause of my fibro, I did start label reading and it is in a lot of products.

I thought giving up diet soda eliminated the aspartame from my diet, little did I know it was in my yogurt, my breath mints, Jello, cereals, and my iced tea. I thought I’d just use this as an opportunity to give my own little public service announcement to remind you to read the labels and cut this stuff out of your diet if you have a chronic illness.

It’s bad enough to be having an awful flare due to the freezing temperatures, I don’t want to add to it with what I eat.

Is It Old Age or Brain Fog?

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It’s a term used often in the autoimmune community, brain fog. But what is it? According to Dr. Lawrence Wilson: “Brain fog may be described as feelings of mental confusion or lack of mental clarity.  It is called brain fog because it can feel like a cloud that reduces your ability to think clearly.  It can cause a person to become forgetful, detached and often discouraged and depressed.  It usually is present most of the time, meaning it does not come and go, although it may become better or worse depending on what a person eats, or one’s state of rest and hydration.”

Ok, so let’s recap. Brain fog = forgetfulness and reduced ability to think clearly. I’d like to state for the record that I’m a mother of three. Some days I don’t know my ass from my elbow. I can’t keep track of who has what activity or appointment, let alone things I need to do for my clients.

I tried to think about it as a whole and figure out whether it’s just something that comes with age and being overwhelmed with my own To-Do List. I think I’d have to admit that my crazy schedule certainly plays a part in my personal brain fog. The difference for me is noticeable when I am in the middle of a rheumatoid arthritis or fibromyalgia flare.

During a flare exhaustion is just as difficult a symptom as the pain. With the exhaustion definitely comes brain fog. I do lose the ability to think clearly and organize things when my body is hurting and I’m exhausted.

So, based on this, I’m going with I’m not THAT old, and despite my crazy life, I do also have the symptom of brain fog, especially during a flare. I suppose that my insomnia also factors into the mix. It’s hard to think straight when you haven’t had any sleep.

I think what bugs me is brain fog is one more thing that is subjective and can cause the rolling of eyes. Even at the beginning of this blog, I was going through the possibilities in my own life that could be causing brain fog–aside from my autoimmune issues.

  • Crazy, hectic schedule
  • Kids
  • Job stress
  • Lack of sleep

What parent doesn’t have most, if not all of those things? It’s easy to shrug off this symptom because it’s not tangible like a certain area of pain. I hate symptoms like that because they add to the stigma that goes along with some autoimmune diseases.

Heck, I’ve heard fibromyalgia is what they diagnose when nothing else is wrong with you and there is no real reason for what you’re feeling. I’ve heard chronic fatigue syndrome is for tired soccer moms that have run out of steam. I’m sure if you’re reading this blog and you have an autoimmune disease like CFS or fibro, you’ve heard things like this.

It all goes back to the beginning — it’s all in your head! Well, it’s not. And along with the pain and exhaustion, there IS such thing as brain fog. You heard it here, and I’m standing by it.

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!!

Do You Have Chronic Fatigue Syndrome?

Photo by MyBestTreat

Photo by MyBestTreat

Chronic fatigue syndrome. Who doesn’t think they have this? Ask any parent how tired they are at any given moment. Between homework, dinner, and getting kids to all of their activities, any person can be exhausted. So what makes CFS so different? A person with CFS feels completely worn-out and overtired. The often feel flu-like symptoms along with the exhaustion.

With CFS, extreme fatigue and exhaustion make it hard to do the daily tasks that most people take for granted — like showering, getting out of bed, or even eating. No matter how much rest you get at night or during the day, the feeling of exhaustion is still present. The exhaustion can also be made worse with stress, exercise, or even just plain overdoing it.

There’s no definitive way to get CFS; it can happen over time or come on suddenly. Like fibromyalgia, RA, lupus and other autoimmune diseases, people who have CFS can feel fine one day and then feel extremely tired the next. Other symptoms may include:

  • muscle pain
  • trouble focusing
  • insomnia
  • low-grade fever
  • muscle aches and pains
  • difficulty focusing
  • tender lymph nodes
  • muscle weakness
  • visual disturbances (blurring, sensitivity to light, eye pain)
  • mood swings
  • anxiety
  • depression
  • sensitivities to foods, odors, chemicals, medications, and noise/sound
  • Numbness, tingling, or burning sensations in the face, hands, or feet

Any of those symptoms sound familiar? If you’ve been diagnosed with any autoimmune disease any and all of these symptoms can be present, which means similar to fibromyalgia, a person may have to rule out things like multiple sclerosis, rheumatoid arthritis, and lupus before a diagnosis can be made.

According to at least one doctor that I spoke with, it is common for the symptoms to be present for six or more months before they will consider a diagnosis. There is no definitive lab test for it.

If you think you may have CFS, see your doctor. Your doctor will:

  • Ask you about your physical and mental health.
  • Do a physical exam.
  • Order urine and blood tests, which will tell your doctor if something other than CFS might be causing your symptoms.
  • Order more tests, if your urine and blood tests do not show a cause for your symptoms.

Usually a classification of CFS is made if your symptoms persist for approximately six months, and your testing does not show any other issue that would be causing them. This process can take a long time, so try to be patient with your doctor. While these tests are being done, talk to your doctor about ways to help ease your symptoms. Although CFS is not a form of depression, as with many other autoimmune diseases, patients may develop depression as a result of dealing with a long-term illness.