What Lyme Means For Me (& Health Update: February 2015)

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What Lyme Disease Means For Me | completemama.com

I had a health update written last month and then hit a really rough patch and never got it posted. (My last health update is here.)

So 3 months ago (I can’t believe it’s been that long!) I wrote that I have Lyme disease and posted some links and assumed everyone would understand the situation I’m in. I got talking to a friend about it, who gently suggested that if I want people to understand my situation, I need to explain what Lyme disease means FOR ME right now.

It’s a legit point because Lyme disease is really different for everyone who has it. You really can’t compare one person’s situation to another because people present with different symptoms and can react differently to treatment. I’ve hesitated to share my symptoms because it’s just not comfortable for me to put this all “out there,” but I’m going to now. If I want to share my Lyme journey, then I just need to get this all out.

As a reminder of where I started, I have a bachelor’s degree in Computer Science and an MBA. I worked as a software engineer for 10 years before I decided to stay home with my kids. Shortly before my symptoms started getting really bad, I ran a half marathon at 7:51 per mile pace. That was then. This is now.

What Lyme disease means for me is:

  • I run through life everyday on an empty tank. Have you read about the spoon theory? If not, go take a few minutes and read that link. Here it is again. Reading this is absolutely essential to understanding, and you may as well just do it now because I’m going to reference spoons throughout this post. I go through each day with VERY FEW spoons.
  • Many days getting the kids up, dressed, fed breakfast, driven to preschool and back, fed lunch, and up for nap… is my absolute limit for what I can do for the day. Some days I don’t know how I even accomplish that much. Some days I manage to make it to the grocery store, but it has to be a REALLY good day for me to have enough energy to put the groceries away. Some days I get some laundry in, but it has to be a REALLY good day for me to put the laundry away. This is NEVER on the same day as groceries. That would be too much. If I do manage to do any of these things, I often find out later that I’ve overextended myself. I hardly ever clean. I just don’t have anything left in the tank for that. When you become ill, you redefine what is and isn’t necessary.
  • I’m frequently falling asleep at the dinner table. I fell asleep after taking a shower in the afternoon a couple days ago… before I managed to get dressed. Getting through a day is hard.
  • I can’t talk to you about anything fun I did on the weekend. I likely can’t talk to you about any plans I have for next weekend. I don’t have any spoons for that. Saturdays I often crash most of the day and on Sundays I go to church and then sleep. I rarely do more than that.
  • I have bouts of awful dizziness. Sometimes it’s for hours. Sometimes it’s for days. With this, I often get blurry vision. Sometimes the blurry vision is on its own.
  • I lose track of details. I forget what I’m telling you mid-story. I forget words. I mix up words. I need to set alarms and make lists for things I do everyday.
  • Sometimes my patience is lacking.
  • I’m running a fever a LOT. This is one symptom that’s been a little better lately, but I’m not out of the woods on this one yet. When I’m running a fever, I feel like I have the flu.
  • I get numbness and tingling. Sometimes in my hands and feet. Sometimes a whole arm or a whole leg. OFTEN I get numbness in an entire half of my face. It kind of feels like I just got dental work.. all the time.
  • Speaking of dental work, between severe dry mouth and whatever else Lyme does, I went from having one cavity my whole life to more than a dozen over a span of couple years. Along with the dry mouth came dry eyes requiring I use drops multiple times a day. A fish oil supplement called DHA has helped the dry eyes and dry mouth a lot. I really notice if I miss it for even a day.
  • I also have acid reflux, which has caused acid erosion in my mouth.
  • I have out-of-control muscle spasms. Most commonly in my face, legs, hands and arms.
  • I’m on medication which makes me horribly sensitive to the sun. I’ve always LOVED summer and sunny days, but now I can’t tolerate being in the sun. I tried to stop taking the medication but only lasted a week because the pain was unbearable.
  • I have pain. Sometimes unbearable pain. In my muscles, joints, and bones. Often in my back. The location of my joint pain is changing all the time. This is a classic Lyme symptom.
  • I get a lot of headaches.
  • I get tremors sometimes.
  • I have digestive issues at times.
  • I am exhausted but I have trouble staying asleep at night.
  • I sweat a lot in my sleep, to the point I need to change clothes.
  • My hormones are out of whack.
  • I am constantly cold. My fingers and toes get so cold, my husband jokes that I should hold some ice to warm up.
  • My immune system is in really bad shape.
  • I’ve lost 25 pounds.
  • Any amount of stress causes my physical symptoms to get a lot worse.
  • I am on a gluten-free, dairy-free, sugar-free, and alcohol-free diet. We’re top-8 allergen free (plus coconut, sesame seeds, and peas) in my house, though, due to my kids’ allergies. I also eat all organic, non-GMO, free-range, grass fed, etc. I was on a much more restrictive diet before this, so this actually isn’t bad at all. People usually laugh when I tell them that.
  • I’m on a LOT of medication and supplements. A lot. They are needed for nutrients, detox, thyroid, immune system building, lyme fighting, adrenal support, hormone balancing, and on and on.
  • I feel like I am constantly going to the doctor. I have an appointment with a specialist on Friday for a test and a follow up. I have an appointment for a test a different specialist sent me for on Tuesday. This is pretty much how it goes.
  • Most Lyme specialists do not take insurance, and there aren’t a lot of them. Mine does not take insurance, and I travel two hours each way for every appointment. I need someone to drive me. I have to pay for my appointments out of pocket and then see what insurance will cover out of network. But this is not even the expensive part. I’m taking “a mortgage payment worth” of supplements each month which aren’t covered by insurance. If you ever wonder why I’m so diligent about getting my sleep and sticking to my diet and taking very good care of myself, it’s a huge investment and I’d like to get better sooner than later.

 

I’m still doing poorly overall. Some days are better than others, but I am not having any good days.

Something a lot of people don’t know is that the treatment for Lyme disease is really hard. Killing off Lyme can make you feel terrible. Often, the body gets overloaded and can’t get rid of all the bad stuff fast enough. This causes what is known as a herx reaction, and herx reactions can feel a lot worse than the underlying disease.

I have been experiencing a lot of herxing as I’ve started my treatment. There are a couple things you can do here. One is to slow down, if needed. The other is to support the body in detoxing (that link is a great resource!) by using many different methods. So that’s pretty much what I’ve done. Slowed down, focused on detox like it’s literally my job, and have worked on ramping the treatment back up. If you hear me mention saunas or detox baths, that’s what’s going on there. I also do the obvious things like drink a lot of water, and have some other things in my arsenal like supplements aimed at helping the body detox, as well as other detox methods such as dry brushing.

I am happy to say I am tolerating more “Lyme-fighting” medicines than I was previously, so I’m making steps in the right direction. It just doesn’t FEEL any better yet. But this is the first step toward seeing what helps and what doesn’t and hopefully eventually we’ll find the right combination of medicine to help me fight Lyme.

In addition, my doctor has me focusing on boosting my immune system and fixing some health issues that are barriers to me being able to fight Lyme with all I’ve got, like my inability to sleep through the night and hormonal imbalances. There are a lot of pieces to the puzzle.

I feel like I should add some closing thought to this, but also I feel tired. And that is Lyme in a nutshell.

See ya, 2014!

General

It’s New Year’s Eve! Is it possible for a year to simultaneously be the worst and best year of your life? If so, that’s 2014 for me.

The worst: Health. Lyme disease for me (with most of the year undiagnosed or misdiagnosed) and the food allergies for the kids. We’re all still battling. Our lives are inhibited in a lot of ways by these illnesses.

But for as much as I share our struggles, I wanted to share some things I am grateful for this year!

  • We took our first “big” family vacation to Florida. We got to spend some time at my mother’s winter home in Sarasota, and we took the kids to Disney. We also spent some time at both of our family’s camps in the Adirondacks this summer.
  • We built a great play area for the kids in our basement. They love it, and it’s working out so well for all of us. Toys are co-located and more organized, there is more play-space, and the kids each have a large table to work on their projects-of-the-moment without anyone else in their space.
  • I am so grateful to have people in my life (some “new”, some “old”) who have been such blessings… always there with kindness and support, and always willing to help. It’s truly awesome to have people who I know value me and want my presence, even when I’m not able to do as much since I’ve been ill.
  • I feel like I’ve been able to go through the whole year with a grateful mind and heart. It’s helped me to handle everything that’s come my way, and it’s also helped me to be true to myself. I’ve been able to embrace and appreciate the things that were meant for me, and I’ve learned when to accept that certain things weren’t meant for me. I feel like I’ve been able to stay true to myself and find peace in my heart, even during some challenging circumstances.
  • I am grateful for forgiveness. We all need forgiveness and understanding at times. It is a blessing not only to receive forgiveness, but also to be able to forgive others (even when they haven’t necessarily asked for it). (A favorite verse.)
  • There is so much beauty in the world, isn’t there? I am so grateful to see it everyday. I love Upstate NY with all my heart. It’s truly one of the most beautiful places to live in every season.
  • I have gotten to see first-hand that people genuinely have such helpful spirits. Countless people have offered us help. (Even though it’s hard sometimes to find the WAYS for everyone to help, the spirit is definitely so very much appreciated.) Friends have connected me with their friends with Lyme and food allergies in their lives, and these people, previously STRANGERS, have spent countless HOURS messaging me on Facebook, emailing, texting, and even calling me to help and offer kind words. The human spirit is beautiful and amazing.
  • So many people have rallied behind my kids and really gone the extra mile to accommodate them. Friends and family have made sure their homes have been safe and welcoming for us and have gone out of their way to have safe food and snacks for the kids. The kids’ preschool has worked with us to keep them safe, and our church has made the kids play area and my son’s Sunday School classroom nut free. They even keep outside groups out of that room and wipe down the tables before class each week. Amazing!
  • So many people have been so encouraging with my writing and sharing here, and so many are encouraging me to write and share MORE. Friends and family, fellow lymies, and fellow allergy moms — your encouragement is so appreciated.
  • I have never felt more sure of God’s presence and guidance than I have this year. We’ve been led through struggles, but we’ve also been guided to the right doctors and answers, and we’ve been given many helping hands. God is with us each and every step of the way, and we are truly blessed.

See? It’s been a wonderful year, too! Thank you all for reading! Happy New Year!

I hope and pray for a wonderful 2015 filled with many blessings for everyone. Remember to keep love in your heart, have courage, and do not to be afraid to make mistakes.

I hope that in this year to come, you make mistakes. ~ Neil Gaiman

 

Coming to Grips with Multiple Food Allergies

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The Food Allergy Files: Coming to Grips with Multiple Food Allergies | completemama.com

Twas the night before Christmas… and I’m writing an update about my kids’ food allergies. (Okay, I’ve been working on it for a while because nothing is speedy around here these days.) I’ve actually been working on a post to share what our first Halloween with food allergies was like (How’s that for slow?), but I am going to back-burner that post and share it some other time.

I don’t think I wrote about this before, but my oldest went to his follow-up with the allergist and was diagnosed with asthma. He’s had trouble with lots of flares beginning in August. The asthma flares seem to be triggered by illness, possibly environmental factors, and his latest anaphylactic reaction seems to have also been a trigger. Being that it’s cold season, he’s been spending a lot of time using his nebulizer. His next follow-up is in March but we’ll probably be back before then.

My youngest went to the allergist for her allergy testing a couple weeks ago, and I am still trying to catch my breath after getting the results. She is allergic to: Eggs, Soy, Milk, Coconut, Sesame Seed, Peas, Peanuts, and Tree nuts. She now has her own Epi-pen, and she is to avoid shared equipment for peanuts and tree nuts, just like her brother. Her peanut RAST was literally off the chart, class 6, which is the most severe class of allergy. She is also likely allergic to amoxicillin, but her allergist said she’s just a little too young to do the test for that. She’s to avoid any amoxicillin until she can do the test. In addition, she likely has asthma too, but she’s too young to do that test also. The doctor got us another nebulizer for her. (Saying it’s been a great year to have health insurance in this family is a huge understatement.)

So, whew. We knew something like this was coming, because like I’ve said before, THIS is the kid we’ve been worried about allergy-wise. It is overwhelming to get diagnosed with so many food allergies. A few random thoughts:

  • You can’t even imagine the excitement we feel when we find a packaged product that is safe!
  • The peanuts and tree nuts were a complete shock. I asked them to test for those “just to be cautious” since we don’t expose her due to her brother’s allergies.
  • Her symptoms that caused us to test: Random bouts of hives, eczema all over causing her to scratch until she bleeds, and random bouts of vomiting.
  • When her nebulizer was delivered, I had the choice of getting another table top one like my son’s or getting a travel one that will plug into a wall or a car. I opted for the travel one, so we can use a nebulizer anywhere. I am not even being sarcastic when I say that was exciting!

This combination of allergies kind of crosses us over the threshold from “looking for which products are still safe on the shelf” to “accepting there is very little we can buy in a package and that we’re going to have to make most things from scratch.” I think it took a little while to truly come to terms with that, but now we accept it. We may as well embrace it and become great cooks! (Related: I got a new bread machine, and I’m so darn excited! I picked it because it’s supposed to be great for gluten free, and my intent is not to “gluten” it since I can’t have gluten. So far I’m really happy with it, although buying the necessary ingredients has been a challenge since I can only find certain products locally in Bob’s Red Mill brand, and they contaminate with nuts. Thank God for online shopping.)

So life got more challenging, but we can do this. Only God knows the reason for these challenges, but we accept them and we’ll all do our best with the support of our family and loved ones. A number of friends have put me in touch with their food allergy mom-friends, and that community is just so amazingly helpful and supportive.

Here some bible verses that have helped me get through this challenge:

Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing. ~James 1:2-4

We are afflicted in every way, but not crushed; perplexed, but not driven to despair; persecuted, but not forsaken; struck down, but not destroyed. ~ 2 Corinthians 4:8-9

Merry Christmas to all!

Lyme Disease & Health Update

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The Chronic Illness Files: Lyme Disease and Health Update -- completemama.com

I have Lyme Disease. For sure. (I got my lab results that confirmed this a couple weeks ago, but I’ve been so beat, it’s taken me this long to get this post finished.)

I feel like I can almost hear the thoughts of many who have followed along with my health issues this year: Now she has Lyme Disease?!

Well, I’ve had Lyme Disease. Now I know.

I have had a million thoughts about this ever since I learned there was a pretty good probability I have Lyme. It’s a controversial disease. It’s difficult and expensive to treat when you’ve had it a long time (also known as Late-Stage Lyme Disease). Nothing about this is going to be easy. It’s not something I’d choose, but it chose me. Now, with a proper diagnosis, I get the chance to fight it. If I hadn’t happened upon the right doctor, my health would have continued downhill. Thank GOD I found the right doctor.

Nothing else I’ve been diagnosed with has been taken off the table. Will it be? It’s definitely possible. Lyme can cause autoimmune problems, and my blood work definitely shows very HIGH levels of autoimmune activity going on. Until I get the Lyme Disease under control, my blood work picture may be unclear. (Sometimes Lyme can mimic other diseases.) There’s only one medication I am still on for the autoimmune diagnosis that’s in question, and that medication is also used to treat Lyme. We’ll get me figured out eventually, but it may take some time.

I have been treating Lyme for almost 3 months now. I started an herbal treatment at the beginning of September (this was started as a test, based on symptoms) and added antibiotics at the beginning of October after some initial blood work pointed to Lyme. I changed to a new antibiotic at the beginning of this month. I also take several supplements to detox and support my immune system. I’m not going to lie… treatment has been very rough so far. I’ve had to cut back on the herbal treatment (when the goal is to build it up) due to my body having too strong of a reaction. Unfortunately, feeling worse during treatment is not abnormal for Lyme that’s advanced, and treatment is probably going to take a long time. (See #8 in the Friends & Family link below.)

I’m going to share some information about Lyme Disease for those who are interested, but first a couple of other health updates:

  • My Hashimoto’s Disease had been under control previously, but I visited my endocrinologist a few weeks ago and my latest thyroid blood work came back terrible. This compounds many of my Lyme Disease symptoms. I’ll have to see if this complicates my treatment at all. My endocrinologist has increased the dose of the thyroid medication I take, and I’ll retest in a few weeks.
  • On Friday I went to see another cardiologist that my endocrinologist referred me to in order to try to get to the bottom of my terrible dizziness. I now have to wear a small heart monitor (called an event monitor) at all times (except in the shower) for 30 days. It’s not so bad and hasn’t affected my sleep much, but the stickers for the leads have been irritating my skin. Hopefully that won’t get too much worse. Also, I have to do some more lab work and am going to do a tilt table test next week and another echo-cardiogram when I go back in January. The great news was that this doctor is going to use the results of a cardiac stress test I did earlier, so I shouldn’t have to do that again. (That was a horrible experience dizziness-wise.) I don’t think there’s any imminent danger heart-wise, but anyone who’s struggled with persistent dizziness can tell you it gets old.
  • I go back to my doctor that’s treating my Lyme Disease this week on Wednesday.

In case you want to know a little more about Lyme Disease, here are a few links for starters.

International Lyme and Associated Diseases Society: Some Basic Information About Lyme Disease

This explains the stages of Lyme Disease: The Stages of Lyme Disease and Symptoms

Here is a lot of great info explaining symptoms, treatment, and the controversy of Lyme Disease: Lyme Info For Newly Diagnosed Patients

This is great for Friends and Family:  So you have a Friend or Family Member with Chronic Lyme Disease: A Guide to Understanding their Struggle (Great list! I especially like #4 because I really wish people wouldn’t take this personally.)

If you want to watch an eye-opening documentary, consider watching Under Our Skin. I watched it on Amazon Instant Video. (And then I found it for free on YouTube. ;))

That’s enough about Lyme for starters. I’ll have lots more to say about Lyme as my journey continues.

To Wish Was To Hope

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To wish was to hope | completemama.com

 

As one who endlessly hopes and dreams, I’ve always been one to wish on everything. Candles, stars, 11:11, eyelashes, pennies, dandelions, you name it. Well, it would stand to reason that at least a little bit of this has rubbed off on my kids.

This morning, I pulled an eyelash off my 4-year-old’s cheek and extended my finger for him to make his wish and blow it off. He already knows the drill.

Now, I know they say if you tell someone your wish, it won’t come true, but I have to admit I just love hearing my kids’ wishes. It’s such a glimpse into their personalities, and today was no exception.

My 4-year-old took a deep breath, puffing up his chest, and exhaled with a quick, forceful blow. He then announced, “I wished that I was 16 and had a Honda car I could drive myself and had my own house.”

My 2-year-old looked at him like he was completely crazy and stated matter-of-factly, in 2-year-old language, “I wish I a butterfly.”

Yep, this sums them up perfectly.

What would you wish for?

The Day I Officially Became a Food Allergy Mom

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The Food Allergy Files: The Day I Officially Became a Food Allergy Mom (www.completemama.com)

“Oh, it’s probably a reaction to eating a food he didn’t like,” my son’s pediatrician said when I mentioned hours of vomiting after eating a bite of a peanut butter cookie at age 2. “I wouldn’t worry too much about it if he didn’t have hives.”

Oh, how I wanted to believe this. My son never liked peanut butter, and at the time he pretty much liked everything else, so it seemed at least possible he could have overreacted. I stopped letting him eat anything with peanuts, just in case.

Over the next year, there were other episodes of unexplained vomiting when eating outside our home. Then came the day he took a bite of a cookie with walnuts. He immediately said he didn’t like it and spit it out. About 30 minutes later, he was vomiting in my car. This time a few hives appeared, but he seemed okay.

At our next pediatrician appointment, I mentioned that I’d like a referral to an allergist so he’d be labeled before he started school if he needed to be. The pediatrician put in our referral and a week or so later we got our appointment… for 3 months later.

At the allergist, I gave his history and said, “Yeah, I don’t know if it’s just a sensitivity, but I want to at least check it out.” I had no idea what I was in for that day.

The nurse numbered my son’s back and applied his “ticklers” containing traces of peanuts and tree nuts. There was also a dab of peanut oil, a control spot with nothing in it, and a histamine spot that was supposed to react no matter what. We were told the testing doesn’t break the skin, that it might get a little itchy, and not to let anything rub my son’s back during the 20 minute duration of the test or it could possibly mess up the results.

Within 1 minute, my son was asking me to come hug him and check if there were holes in his back. Numerous spots were already red, and I could tell right then and there we were dealing with an allergy. After a few minutes the nurse came in to check him, then she came back in with someone else, then the doctor’s head popped in.

“Wow, that peanut oil one is HUGE!” the doctor was saying as she returned to the hallway.

The nurse was sent back in to remove the peanut oil from his back at the 10 minute mark, halfway through the test. Maybe this should have been my first clue that something abnormal was happening here.

The next ten minutes were spent just trying to sooth my son and keep him still, as he was in obvious discomfort.

At the 20 minute mark, the nurse returned to measure his spots. Almost everything was either borderline or a clear allergy. I think there were only two spots that didn’t react at all.

The nurse wiped everything off his back and applied a heavy coat of hydrocortisone cream. She said the doctor would be in to discuss the results and left the room. My son and I sat down at the table to wait for the doctor. I’m not sure how much time passed. Maybe five minutes. Maybe ten.

Then he started to get very congested. He began to gag and heave. I started to get him up from the table and a nurse popped in. “He’s gagging,” I said. His face turned beet red as he coughed and gasped.

Within what felt like ten seconds, the room was swarmed. I could hear the doctor shouting orders for Benadryl, epinephrine, and prednisone. Was this really happening? Yes, it was. Anaphalaxis is rare during a skin test, but it was happening. I didn’t have time to panic because I had to calm my son who was beginning to shout and fight with the nurses, something totally out of character for him.

After we got him medicated and calm, he was still having breathing problems, so we had to do a nebulizer treatment. The doctor peeked in and said we weren’t going anywhere for a long time, and the staff put on another movie for us. (At this point we had already finished Ice Age. Next up was Planes.) Some of the staff came in and brought my son a coloring book, stickers, and a toy lizard. These small things really helped turn around what was a horrible experience for him.

Finally, the doctor came in and hit us with a fire hose of information. She made sure to say the words “life-threatening allergy” about 15 times. She made she we understood that because of his severe reaction, we had to be careful about anything he comes into contact with. He can’t eat anything made in the same facility with peanuts or tree nuts. No more hard ice cream. No bulk foods. Lessons in cross contact. No nuts in the house. No nuts at preschool. (We were already all set there. Thank God.) Get the extended family on board to keep nuts out of family gatherings or don’t bring him to those places. 50 other things. It was a lot to take in, especially after all we had been through.

I left there kind of joking that “This wasn’t even the kid I worried most about food allergy-wise.” My daughter has had food issues for a while, and we now have her appointment set up for allergy testing in December.

In hindsight, I’m amazed. It is only through the grace of God that my son never had a life-threatening reaction before his allergy test at age 4. Now that we’ve realized his sensitivity, every instance of vomiting he had after eating outside our home can be explained by cross contact with nuts. In one of those instances, we even let him eat Chex Mix that had nuts and we just picked out the nuts. I shudder to think about it now. That could have been disastrous. Now that I know more about food allergies, we should have taken the vomiting a lot more seriously. Hindsight is 20/20. We are just so so so lucky.

So that, in a nutshell (haha), is how I became a food allergy mom. I have learned SO MUCH since that day and plan to share quite a bit here about what I’ve learned and about our experiences with food allergies.

Does anybody have any questions about food allergies that I could answer in a future post?

PS. People who have heard our story have been nervous about taking their kids for allergy tests. I want to note that anaphylaxis is extremely rare during a skin test. It is so rare, a dear friend of mine took her son a few weeks later to a different practitioner at the same allergy office, and when my friend mentioned our experience, the practitioner said, “I remember that! It was a Wednesday!” The story stuck out to this practitioner several weeks after it happened, and that office does TONS of allergy testing. So while it’s good to be aware of the possibility of this happening, please don’t get too nervous about it.

From January Until Now

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The Chronic Illness Files: From January Until Now (www.completemama.com)

My posts kind of fizzled after January. Here’s what happened with my health, the brief version. I’m sure I’ll forget to include things, but this is the gist.

In January, I started feeling really, very, inexplicably, unable-to-get-up-in-the-morning exhausted. At first I thought I was coming down with an illness, like the flu, but it just did not ever go away.

I referenced my running becoming difficult in this post. January was, in fact, the last month I was able to run at all. Shortly thereafter, I started developing extreme dizziness and several other symptoms, and I stopped running because I was afraid exertion was doing serious harm to my health.

I went to my doctor and over the course of several visits had her check my thyroid and anything else she could think of, along with a few tests I suggested. I have had Hashimoto’s disease (an autoimmune disease that attacks the thyroid) since I was 18, and it seemed like a likely culprit, but my thyroid labs looked okay. I got referrals to an endocrinologist (for Hashimoto’s) and a rheumatologist (as a result of one of my tests), and then my doctor ran out of ideas.

In February, I got a new doctor, who was more experienced. By the end of February, I had over 40 symptoms. I saw two specialists to check on specific issues while I waited for my other appointments.

In April, I finally saw the rheumatologist, who diagnosed me with another autoimmune disease*. I began taking medication for that. Somehow, I still wasn’t completely convinced I found the root of my problem.

In May, I saw the endocrinologist, who ran a bunch of endocrine tests and couldn’t find anything wrong there, but she did change my thyroid medication to see if that would help. Also, the rheumatologist gave me another medication, which should have made me feel better, but actually made me feel a lot worse. Unfortunately, I stayed on this medication for nearly three months. (More than half of which was tapering off.)

In June, I saw another specialist who ran some more tests. I wasn’t feeling any better by the end of the month, so I got serious about cleaning up my diet (after being “just” gluten-free for four months) and started following the autoimmune paleo diet to see if that would help. A lot of people think it’s a crazy diet, but when you feel terrible, you’ll try anything. I did see some small improvements over the next few months, but I knew I needed to improve a lot more.

In July, I saw another specialist to check out a specific issue.

In August, I saw a naturopathic doctor, who met with me for a very long time. She ran a bunch of labs my other doctors hadn’t, and suggested a number of supplements. I also had another round of visits with almost all of my doctors. More medications prescribed.

In September, I returned to the naturopathic doctor. One of my labs indicated I may be headed toward an additional diagnosis*. Something that was not really even on my radar. Something that makes me question: “Could I possibly have BOTH the rheumatologist’s diagnosis AND this diagnosis?”

This month I started medication to begin treating the new possible diagnosis, and next week I will have additional testing done to try to get a more definitive answer on that diagnosis. The medication is definitely making me feel worse, but that is typical. I also went to another specialist to check out something specific, and I am scheduled to follow up with the ND if my test results are back in time. If those results are positive, I will seek another rheumatology opinion.

So that’s pretty much where I’m at right now. I’m still following the autoimmune paleo diet for the most part. I have added back some foods at the recommendation of my ND. I am currently treating Hashimoto’s, the other autoimmune disease, and the potential new diagnosis. I know this post lacked a lot of details, but that’s because, at this point, I prefer to keep all of the speculation between my doctors and me. Being open about my health issues is difficult for me, so this was a start.

* Please bear with me, as I have a hard time revealing what these diagnoses are publicly when I still have questions about them. I’m sure more will come out in due time.

Okay, that’s all for today. No cute quotes this time!

Nothing Really Goes As Planned – Part 2

General, Spiritual, ,

I started this blog because I felt I had so much to write about, and then a series of life events happened that left me with neither the time nor energy to write. I’d love to say I intend to write more, because I do, but I feel like I have been smacked over the head this year with the fact that nothing goes as planned.

I have had non-stop health issues this year. My kids have had health issues. Even between this post and now,  a huge new health issue came up that’s been consuming all of my time. My health knowledge has increased at least 10,000% this year. It has consumed my life, and none of this could have been foreseen.

God is in control. Everything that has happened is part of His plan.

Sometimes I think our hardships reveal our blessings. We’re grateful for all that we have. We’re grateful for the people who stick by us, and we’re even grateful for the people who don’t.  We appreciate everything that’s good that much more.

I was searching for a quote to add to this post and took a break to browse pinterest for a second. This pin was the first one that came up:

Train yourself to find the blessing in everything.
Source: I stole this from pinterest, presumably from fionachilds.com

It was meant to be. Until next time!

Nothing Really Goes As Planned – Part 1

General

Irony. I tried to sign onto the site tonight – after how many months? – to write a post about how nothing really goes as planned. Tried. Because my site was down and I spent my time dealing with tech support instead. Now that the site is back up, my laptop has informed me I have about 10 minutes of battery left. It’s flashing red lights.

I should have known that even my blog post wouldn’t go as planned. (Should have.)

The real post will have to wait for another time. For now, I’ll post this and call it Part 1.

Blessings to all!

Our Bunny

General

It has been a while since I have written here. My life has been a bit consumed with health issues the past several months, but that’s not what this post is about.

Instead, I will introduce you to our bunny. Here he is!

our_bunny

Are you thinking he looks like a wild bunny? Well, he is. He’s not really our pet.

This bunny likes to sit in our backyard, dutifully peering into our kitchen windows.  Whenever my kids think of it, they’re looking out the back window for Bunny. (I like to think Bunny is looking for them, too.) When they meet at the window at the same moment, they’ll sit and stare at one other for quite some time. Somehow they have a connection.

Do you ever feel a draw or bond to certain animals or people? (Excluding pets, family, etc.)  A feeling of connection you can’t quite explain?

(Just wanted to make a light post to ease back into writing here! More later!)