Not a New Year's resolution!

Year ago at this time I was technically diagnosed with MS (multiple sclerosis). It was a shock and took my whole family and friends on a long journey to confirm or deny it. A year ago I wasn't able to sleep because my legs were tingly and numb. I started having a chronic headache over my right temple (still have that one). Going to bed was the worse thing, because I would just lay there or would have to get up every hour to pee or my legs wouldn't stop moving. At the time the doctor starting me on meds to help with the numbness. Sleep got some what better. Sadly the medicine made me gain water weight and within a couple months I was 15-20 lbs heavier from that previous fall. (All the work to to get baby weight off went down the drain) After all my doctor trips and procedures to determine that I do not have MS, I still wasn't happy. I thought I would be relieved, but mostly all I felt was hopelessness. I wasn't any better and I had no answers.

I am finally stepping out of the roughest year of my life physically into a new era! I have a diagnosis, Chronic Lyme Disease! Some of the previous symptoms are still there, but many are getting better! Thankfully I have switched to a supplement for sleep instead of meds (the weight still hasn't gone away, but I guess I have to deal with that). I still have numbness randomly and tingly too. The chronic pain in my head has never left :( but there is still hope for the future. I won't give up!

I can't promise I will be 100% better by the end of 2017, but I can promise myself to take better care of myself and recovery. I can't promise that stress will go away, but I can promise to slow down and rest when my body says so to help relieve stress. I can't promise all my chronic pain will go away, but I can promise I will try to learn the triggers of them. I can't promise I will have enough energy or endurance to be out and about everyday, but I can promise to have fun filled moments with my precious daughter when I can!

This next year I don't want to make a new year resolution...I just want to keep working at the journey that has been set before me. Praying for my husband and his new job! Enjoy all my 2 year old girl's moments, even the tantrums and no naps. Making better financial decisions. Connecting with new friends and relationships! And last but not least WRITING MORE!!! If there is anything that I have learned from this painful year is that my story can help others, whether they read them or not, I know that it helps me to heal emotionally from this long journey of keeping most of my pain to ourselves. I never want to stop doing something that I feel led to do even if one person reads it (my faithful mom) or millions!

The struggles of Chronic Illness and money

Sometimes we are faced with tons of struggles. Those of us with chronic illness and especially invisible ones we are told not to stress ourselves out, mostly because stress causes more pain, more complications and much more. Actually, what is more difficult than stress is the cost of the disease, monetary costs.  It starts with the price of drugs, price of doctor visits, price of supplements, and price of hospital stays.

Being sick isn’t fun, but financially it hurts worse. When my daughter was born we had enough (or so we thought) money for her delivery. But when there was complications things got a little more expensive. When she didn’t take to nursing and was allergic to all over the counter formula we had to go purchase the most expensive formula on the market, which wasn’t covered by insurance. Even still we had tons of doctor visits, specialists, and more. The amount we paid out of pocket kept rising and we just were not prepared for this. I know there are many of you financial planners that would say you should of known better. But at the point of having our daughter we were just doing good at paying off our debt and keeping a good budget. This situation set us back and at the same time we didn’t know we qualified for any financial assistance. Since we didn’t qualify for the state’s assistance we had no idea that there were more options with the hospital and clinic. Things weren’t looking good, but then we got a couple of breaks and finally we could see the light. Then I got sick and my husband had to go by ambulance to the ER twice. We just weren’t prepared for it all.

The stress of finances makes our illness worse. I can even tell with my husband when he is stress his blood sugar goes up.  For me I get more pain, which just puts me in bed longer. Honestly there has been days that we didn’t even know if we have enough gas or groceries. But thankfully we have had friends and family that have helped us. We couldn’t of done it without them. For a long time we were silently suffered together as a family because we were embarrassed. We talked to financial counselors and many said we weren’t that bad. Which understandable compared to others we weren’t, but we weren’t moving forward or getting better. I couldn’t forgive myself. I was and still am hard on myself, blaming myself for the dumb mistakes and the use of credit cards to pay medical bills and groceries for all of special allergies.

I honestly don’t feel like I deserve any help from anyone. I feel like I should be the one giving help because in truth compared to most of the world I am in much better shape, which I am grateful for the blesses we have. Still in so many ways I want less, I need less, but getting healthy is still so expensive. Why do I have to try to explain myself to everyone about why we made certain choices? Why can’t I just be okay with the fact the past is the past and we made the mistakes and we are trying are upmost to be better. It isn’t just an easy fix. I can’t just get a job and go back to work to solve the problem. I have to think of my health and our daughter too. I know people around us are problem solvers and want to help us out. All I want is someone to forgive me for the mistakes and still love us no matter if we forget to send a letter or call. Money comes with strings, no matter how hard we try for it not to. I watched my parents constantly struggle with needed support from churches and people. And even though the support they got was for them to live, not just do “missions work” it was still very difficult to do fun activities without us keeping it a secret from family and friends. I grew up thinking money came with attachments even though we would give money freely to local churches or people without expecting anything in return. Why can’t I expect that of myself? I would so much rather give away money to many others than be a receiver, but right now in our life we need to be receivers. We do not feel deserving of it. And there are been so many that have unselfishly given us to help us through these difficult times. Also I do believe that the gifts from friends and family do not have strings attached. It is only my embarrassment that puts strings on the money. I promise that one day I will be able to pay it forward even if today I can give unused toys to a new international friend. I always need to remember that paying it forward doesn’t have to be anything big.

We are still being surprised by what God wants to do through this situation. I wouldn’t want anyone to go through what we had to financially, physically, and emotionally. So if all our mistakes help others not do what we did then it is all worth it. Right now my voice is to write, maybe a little too honest than some people want to hear, but honesty needs to be heard. So many of us hide behind the difficulty because we are afraid, which we did too. But all it did was get us deeper in debt and hurt. We never knew how large of a family and friends we had until we opened up and shared our story. Being honest has been the best decision for us. I pray that our story can help someone today!

Balance...the never ending struggle

Balance!

How do we achieve it. I think for any human being balance is very difficult. But for those of us with chronic pain and disease it seems to be even harder. 

I wake up one day and feel actually pretty good. So I want to accomplish more than I usually can do, but I know deep down that doing too much on a good day will set me back the next day. I only do my best to do just enough to help me feel productive and make sure I rest in between saving my "spoons" (from the spoon theory) to be able to do more with my family or for the next day. But you see that is a good day! 

What happens to balance on a bad day. There are days that no matter what I do I just wake up having one of those days. More pain, more dizziness, more confusion, more blurriness, and more disorientation than a normal day. A normal day means something so different to me now, but that is a whole another blog. 

On a bad day, I do not want to do anything. My body just says stay in bed. Thankfully I have a 2 year old that won't let me. So matter what my body says 6:30am I have a cute little girl saying "Mama Mama...hi". Still on a bad day I will be slower, and I will probably let her watch Signing time and Curious George a few more times than I want her to.  I need to remind myself that it is a good thing I got up for the day. Even though it hurts to move and takes me twice as long to get the whole family ready in the morning, I know that still doing small exercises help. I still have to make myself walk, maybe not as far, or not as fast. I know that even though I need to rest, I am much more afraid of getting worse if I don't use muscles regularly.

Balance!

It is hard no matter what day you are presented with. I keep hoping that I will make wise decisions everyday. I know that my disease is very invisible to others, but it is still very much with me. The good news is I am getting better. It is slow, but it is steady. I still have to watch what I eat and how much stress I allow in my life. (like trying to put a toddler's hair in pigtails can be stressful for me) My body isn't the same like it was before all this. And I need to find my new balance for me now and not trying to go back to how I felt before. That might never come, but I need to keep looking at the things that I can do now that I couldn't do a year ago, like going grocery shopping, and cooking dinner, or being in crowds. Keeping my balance is a step by step journey!

Forbidden word...

Depression!

With any invisible disease, chronic disease, and autoimmune diseases doctors tell you that you will have bouts of depression. I have seen my husband (who has type 1 diabetes) have a day or two of it now and then. But for someone people I know it is longer. Depression exists...just probably not in the way we see it.

It is such a taboo word, but it is very real. Many people reading this might disagree with me. They might say "pull yourself by the boot straps and get over it." And for some people that might work, but it doesn't always work for many people.

For me, it isn't something I deal with everyday, but it happens. Today for instance I woke up knowing this is going to be a rough day physically. It took everything out of me to get my daughter and myself ready. Thankfully she went to preschool and I went home and collapsed. Rest is good and I know I need it, but at some point I do like to get out of the house. I am a very social person. People energize me. Slowly we are meeting people and making new friends in our new city. Still it is this chronic lyme's disease that has put my socialization on hold some days.

On top of feeling every part of my body ache, we got some bad news today which of course sent me into a downward spiral of sadness. Then even though the sun was so beautiful and the weather was perfect fall weather I wondered if I could make it out and take my daughter to the park. Sadly my body couldn't even chase her through the grocery store. Because of past experiences I didn't want to make a mistake of getting worse while being far away from home. So I made the better decision to go home until I had reinforcements home (my hubby).

Still accepting that this healing process is still a very hard. What goes through my head is "Will I ever be the old me before I got sick?" Am I okay with this new me? I am still coming to terms with it all, like I am not like other moms or women, working full time, managing 4 kids daily, running marathons, or juggling all of these. They have their own struggles, just like I do, but different. Mine are most physically based that most people do not see. I have started saying less and less what is in pain or numb, because some of it is always there and it only makes me feel like a complainer which I never wanted to be. But here are things I need to do:

I need to stop comparing myself to others!!!
I need to stop being jealous over those who have lost all their baby weight.
I need to stop being jealous over those that can exercise.
I need to stop beating myself up over something I had no control over.

I need to forgive myself for lazy days with my daughter (probably too much veg time).
I need to forgive myself for making one day mistake of eating the wrong thing.

I need to breath.
I need to be okay that maybe today I missed the sun, but there are always more days to come.
I need to be okay that I am not the mother I had plan on being, but still the right mother for our daughter.
I need to be at peace with my disease and grateful we have answers and slowly moving forward.
I need to be okay that maybe some days I cannot shake the depression, but the prayer is "this soon shall pass."

I need to be me...not the old one that traveled the world, dreamed of writing books and speaking, changing jobs and moving all the time...I need to be the new one, who has a story that involves a lot of pain and struggles, a mom that maybe on some days cuddling and resting with her toddler watching Curious George is all the loves she needs.

How Whole 30 prepared me for this journey!

About 3 and half years ago my best friend and her sister in law introduced me to a book called "It Starts with Food." The reason for that was I had been dealing with various blood sugar lows from my husband and his Type 1 Diabetes. I was learning how cooking some things a certain way really effected the way his body reacted. I read the book within about a month and really learned a lot about how food and how our body responds to some of it. As soon as I was done with the book, we as a couple did a 30 day fast called Whole 30. Just meat, vegetables, fruit. No grains, no corn, no beans, no soy, no dairy and no sugars. My best friend and her husband join us for the 30 days. It was difficult at first, mostly because I love bread so much, but it made a huge difference with my seasonal allergies and other intestinal issues. It also helped my husband's diabetes and seeing how different foods effected him.

After those 30 days we slowly introduced other foods to see how our body responded to them. For me dairy and soy were definitely "no no's." Most of the time wheat and other grains weren't that great, but rice seemed to be fine at the time. The 30 days changed our kitchen and our view on eating forever. My mom would joke with us saying we don't have any crackers anywhere. It was true. We had snacks, but not like we did before. Yes, there was times we would not be strict on it for a period of time, but if it was a food that trigger food for us we would certainly pay for it.

Fast forward a year and half later when our little marshmallow was born. She had struggles with taking my breast milk and had a lot of dark mucus in her stool plus red blood. Since I already was lactose free we supplemented with a hypoallergenic formula that was over the counter. Still didn't help. I had already quit breast feeding, because she just hated eating all together and I lost my supply. When we finally got to an amino acid base formula for babies with "multiple allergies" she was a different child. She thrived and finally gained weight. Introducing food was difficult and with her first allergy testing she was allergic to corn, oat, wheat, soy, egg, all nuts. (officially not dairy but I still didn't give it to her because it cause a lot of mucus). She was too young at the time to do food challenges so we just tried to feed her what we could. By the way corn is hidden in EVERYTHING....and they do not put it as an allergen on the package. Thankfully, since I always read the ingredients for "sugar" for my husband, my skills continued as I looked for these 7 allergens.

Since then we have retested and she now only is allergic to egg, soy and all nuts. Because of my whole 30 experience I did limit her wheat for many reasons I do not have time to share. Thankfully she can eat corn...and she loves grits and sausage every morning. With FPIES (Food protein induced enterocolitis syndrome) you typically can not have chicken. For some reason this girl hates chicken most of the time. But loves sausage and will eat it all day long thankfully!

Now skipping head to recently where I was diagnosed with alpha-gal syndrome, meaning I can not eat any mammal meat. Also I had to go even further with the whole 30 and do the auto immune protocol which means getting rid of all nightshade plants too (potatoes, tomatoes, eggplant, all peppers, and most spices.

When we did Whole 30 the first time it seemed impossible to think of cutting out SO much of the food we typically ate. But honestly today I would give anything to have pork or hamburger (just the patty wrapped in lettuce). I never thought I could be on such a strict diet. That is why I am SO grateful I read that book before my daughter was born and before my health went down hill. God was preparing me for what was ahead. He knew that we would have food allergies with our daughter that we would daily have to deal with and he knew that I would have chronic lyme's disease that would effect how I eat. I feel so blessed that through all this...God's hand has been right there next to us even when the storms have been heavy and rough. He gave us a set of armor to help us face the battle that was laying ahead of us.

Stubbornness...how it hurts me

Tuesday started out a productive day. Thankfully our little marshmallow was in preschool (thanks for family helping us out till we get back on our feet and health). I got some bookkeeping done, apartment stuff and some well needed writing. I actually felt really good. But one of the lagging to do list things that I didn't accomplish Monday was going to the pharmacy transferring our medicine and putting in new meds for myself. As I was heading to Walmart my chronic headache got extremely worse and my eyes started to not focus. I thought it was just the wind that made me feel off balance again. After a little bit of time in the store it "seemed" that things calmed down. I also thought since I was there without a two year old I can pick up some gifts for an upcoming baby shower. At this point I didn't realize I was getting worse and wasn't communicating well. I was getting hungry (and the one time I forgot my protein bar in my purse). And yes...I could of gotten something in Walmart, but typically quick food items at walmart are off my eating list, plus I get so focused on the task at hand I ignore what my body needs.

Now looking back this is all to familiar...when my hubby has a low blood sugar he gets stuck in a repeat cycle and can ONLY do what was last on his mind. I have learned arguing with him is pointless after 5 years. I just put sugar in his mouth and wait 30 mins till he comes back around.

Same thing is happening to me, but I didn't have anyone to bail me out. My stubbornness is hurting me in recovery period. If I had just chosen to go home as soon as my head started hurting worse then I might of been able to of gone back out and finish my to do list. Of course this all makes sense in my head right now, but when it comes on so quickly I don't always have a clear plan to help me get out.

To many of us stubbornness can be so helpful and make us work harder and do better at jobs. But for me with chronic lyme's disease it is hurting my recovery. In my mind I am frustrated because this was not how I imagine motherhood or marriage with my husband. Yes once again...I had set myself for expectations that I didn't even know I did. As a dear friend advised me yesterday...all of us are given a certain of number of spoons a day to work with. For me it might take me more spoons for me to help get my family ready than someone else. Then driving the most multi-tasking job for me takes more spoons than others. I am learning that even if I have two or three things on my to do list, when my body starts warning me I need to stop and save my spoons for later. I say all this in theory...now practicing it is my prayer that I can do!

...Every duty and Every interruption...

Today in my devotional reading it said "Step with a firm step of confidence in Me into each unknown day. Take every duty and every interruption as of My appointment" (By God Calling). I thought well with a two year old there is always interruptions that is why my task list is usually 1 or 2 items so that I feel more accomplished by the end of the day.

My goals today were a walk, rest, and pharmacy. Since I woke up feeling pretty good (less pain and fatigue) I really wanted to do a good walk today. It took us a while to get out of our home, but when we did I couldn't decide where to go for a walk. Gratefully there are SO many paths and parks here. When I finally decided on one I wanted to go a little bit farther than I had before. Today's path ended up being next to a road on the left and pretty thick bush on the right. As we were going along I kept hearing noises in the bush and wondered if there was another trail inside there, but then I heard a man trying to yell out for someone to call 911. I stopped and look. It was almost difficult to see the man because he was about 10 meters away from me and he was wearing camouflage too. He said he had a seizure and was feeling dizzy. He had decided to take a short cut and didn't end up well. I really couldn't get to him easily and didn't want to leave my little girl on the path by herself. Thankfully the ambulance came quickly since the hospital was only a mile away. The EMTs took over and I left when they were able to get him into the ambulance. I am not sure what the man's whole story was, but I am glad that I heard him. Even though the path is usually full, today it was quite empty with only a few bikers that rode by during my time there. One thing that I have learned from all my dizzy spells and bad medicine detoxes it is hard to walk or be coherent after something like that. Before my medical issues I might of not completely understand the man's situation, but now in a small way I could totally relate.

With all the sad things that are happening in Haiti and on the east coast from Hurricane Matthew I feel helpless because of not being able to help those in need. I do know that we can always give money, but sometimes as being an MK (missionary kid) who is always been involved in some sort of ministry it makes it hard not to be able to help physically to others that are in need. Also I am aware  there are tons of opportunities of ministry available all around me, but a good friend told me that sometimes pushing to find ministry isn't as good as letting God "interrupt" your day with opportunities of ministry.  My next step for me is making sure I pay attention to the interruptions during my day. I am grateful that I listened to God today...praying I will keep listening to His still small voice. Even if it is "to rest or to go."

As I was reading a bible story about Moses to our little marshmallow last night...I was hit by a new revelation between mother and child. When Moses' mom took the biggest step of faith of putting her baby boy in a basket to float down the river, she wasn't thinking about food allergies, SIDS, or even whether we should cry it out or not. I am sure she was thinking of the animals in the water, the water itself, and possibly the boy going into the wrong hands. How did the his mom feel!!! Even though we do not face exactly the same situation that she did...we as mom's still have our struggles. I still struggle leaving our little marshmallow at preschool knowing that she could get in contact with something that she is allergic to and then I am not there to help her. I also struggle with going out to eat knowing that we probably sound like the most annoying family asking so many questions about what it is the food. I still am bothered that I probably will have to keep giving her some allergy meds till we figure out what are her specific outside or indoor triggers.

When reading that story last night, God just said "I've got her." What a reassuring statement, because I don't know about other mom's but when they handed me that baby in the hospital and the doctors kept saying she needs to sleep on her back to prevent SIDS. Seriously I think the first year of her life I kept wondering if she was breathing. Now she wasn't a super sound sleeper and till she was 13 months old she still had one feeding a night (she didn't have enough calories in her formula). So I think after I realized she was fine in bed I would do my best to just sleep. Even still like last night, she woke up coughing (like a throwing up sound). And we couldn't get her to go back to sleep. Your mind wanders...and I have to keep going back to the statement by God "I've got her."

It will be a day to day process, and I still am taking my normal food allergy precautions, but the good thing is each day is a bit easier. I feel like Bob in "What about Bob" baby steps every where...baby steps with a new restaurant or baby steps trying new food. Baby steps with new place to visit. I can't keep her in a bubble, but knowing that someone much stronger, wiser, and powerful has got my little lady! Makes me smile and breath a little easier.

The invisible diseases...from food allergies to chronic pain!

Years ago if someone told me that someone has lyme's disease or chronic fatigue and pain, I probably just thought they need to take some kind medicine and just pull themselves up by their bootstraps. Honestly, I really probably wasn't patient with winers. But now things are different. 

I find myself wanting to explain to someone why even though I look pretty healthy that I can't eat this, I can't do this. I even have people ask when people are trying to sell me their yummy bread and desserts at the farmer's market what can't I eat...it would be easier to say what can I eat is a shorter list. When Mark and I got married, I thought our first and only thing to deal with is making sure sugar was not in the food he was eating and the mysteries of sugar and how it works in food whether baked or cooked. We did eat pretty healthy and I read a book called "It's Start with Food" letting us do a Whole 30 diet which dramatically helped me and my allergies and Mark balance out a bit of his highs and lows with blood sugar. We sort of stayed with that lifestyle of just eating meat, fruits, and veggies. Wheat and dairy were definitely out of our lives. Rice was still in (mostly because that was my staple overseas...in a latin culture you can't have a meal without rice). But overall we were doing good health wise. 

Then our little marshmallow was born, her food allergies were so many that she had to be on the special formula (amino acid base formula) till she was a year and half. Her first scratch test she was allergic to corn, oat, wheat, soy, all nuts, and eggs. Have you ever seen how many things have corn in them!!! Since it isn't consider an allergen issue it will not be highlighted in the warning section. Meaning more reading of ingredients (which thankfully I have done with all of Mark's food because of sugar ingredients). She technically could have dairy but that is what made her have mucus in her stool. Good news is that the corn, oat and wheat are off the list now. Officially we know her reaction to soy and egg (accidental food challenge). Have no idea what happens with an encounter to nuts, but not willing to try yet. Overall she is doing better, but she does take enzymes everyday. During the time when we introduced food to her she wasn't digesting them at all. It all would come out in whole pieces. Making me think, she will never get off this formula till she finally gets nutrients from the food she eats. We went to a homeopathic specialist...well because doctors were kind of unsure what she was dealing with. They saw that had issues with producing enzymes to digest food. After the enzyme intake things have gotten better for the most part. 

But this leads me to my journey. My mom would always notice my worse reactions were after I ate food. Never knew that my body was rejecting the food I was eating. Right now I cannot eat any mammal meat (including gelatin products), no nightshade plants (white potatoes, tomatoes, eggplant, all types of peppers like spices), no sugar, no wheat, no rice, no dairy, no soy and no oats. Before I was just eating mostly meat, fruits, veggies and rice. But when I found out that I was allergic to beef and pork...I was shocked that maybe my chronic pain was effected by what I was eating. 

Now that I have been on antibiotics to kill the lyme's bacteria, I have been feeling better. I still have chronic pain and honestly I thought being on a strict diet was helping then this week I had a dizzy spell that I haven't had in over a month. I left me sitting in the middle of a parking lot with our daughter in the stroller probably screaming that she wanted to walk. Since we have moved to a new town and my husband cannot answer his phone at work easily I was struck with who do I call if I need help. Kind of scared me because this hasn't happened in a long time. Then the next day I went for a walk with our little marshmallow and I started feeling dizzy again. My mind goes to all places...what was the trigger. What did I eat wrong. What is next for me to get rid of in my diet. Or is the new medication too much for me...do i need to skip a day or two? So many questions. Then the pain hit yesterday...more than the usually chronic pain. Pain to the point I can't even walk a mile. My husband had to leave me at the park and run home to get the car to pick me and my daughter up. I soooo badly want to enjoy this fall weather and I can't even walk up the stairs of our townhouse without crawling. I keep asking why...maybe there won't be answers yet, but maybe there will be. 

So I did some research and talked to my lyme's friends...so there was one test that was done that I didn't completely understand, but learning about it now. I have a mutation of homozygous MTHFR. Which means no matter what I eat health or not my body cannot make it into folate. I can eat all the green veggies with folic acid, but all it will do is jam up on the highway of process and leave me more sick. I am still learning about this because I just found out about it this weekend. Now I need a new supplement methylfolate that will help me finally get the folic acid I need for my body from the food. We will see what that does. I guess from all those questions is I have a genetic defect that has made me unable to get better. Which makes me feel a little better since I have done all the right eating. As for now we will have to wait and see what this supplement does. And now I have more research...if I have this mutation what if that mutation my daughter has is what is causing her not to digest food and all her allergies. My mind can't stop working even though my body hurts...I won't quit learning.