While I hate to hear that people have suffered like I have with Lyme, it's always nice to know that my posts make people feel like they aren't alone in their suffering. I always appreciate each email I get. I never know how to respond. Most of the time, I guess, it's because I get emails with people asking for my advice, when really, I don't have my stuff together and this blog is just a way to pour my heart out.
I have no advice, only experience.
If you can learn from mine or if my suffering brings you comfort in feeling less alone, I am grateful. I feel purposeful when I've connected with another Lyme sufferer....and yet I also feel helpless because aside from camaraderie, we're all in the same boat of 'not knowing' in terms of our health.
I'm writing today as many emails have come in asking about the baby. And in such a timely manner! Massimo was born just two short weeks ago, perfectly healthy. While I don't have documentation or test results that tell me this, I've decided to take the approach that 'no news is good news' and completely rely on God to show us when to be worried and when to pursue tests and/or treatment. Instead, we will focus on celebrating his arrival and enjoying his presence. I thank God for him every single day. This baby, for me, is a sign of a new beginning. While I don't want to think of this as starting over, as I am never regretful of experiences I've had (even one as horrible as a chronic illness), I do love the chance God has given me to be a mommy once again.
As far as my last blog post mentioning feeling lonely and unsupported, I need to update that as well.
While I don't always feel like I have the support I want, God has given me the friends I need. I have a small number of supportive friends and family members that have shown me love in various ways: I am not alone. I am supported. This pregnancy has been a way for people to reach out and help in ways they know how. Unfortunately with Lyme, there's no 'protocol' in knowing how to help...with a new baby, there is. So, the path for support has been paved by years and years of tradition and understanding. And, you know what? I'll take it. Maybe that's part of God's redemptive gift to me as well.
The only hurdle I've had to deal with recently is showing folks my situation. As the postpartum time is usually typically, I've had to show them some understanding and insight into the fact that my postpartum time is NOT typical. I've had to say no A LOT. I've had to be protective of my physical and mental and emotional health A LOT. It's hard because I'm reaching out to people, telling them, "please help me". And while they are willing, I also have to tell them, "No, that's not helpful....THIS is." That's hard. It's hard to direct people into helping you properly because there's a part of you that feels like you come across ungrateful or particular.... beggars shouldn't be choosers, right? But honestly, this is a growing experience between ones I love and those who love me. We're working out the kinks and hopefully will come to a more fruitful relationship because of it.
So, practically, how has Lyme looked since I've been pregnant and beyond?
Well, during my pregnancy, I was T-I-R-E-D. In my life, I've experienced pregnancy tired and Lyme tired individually. This was like a combo of the two. Also, during my pregnancy, in the first trimester, I had joint pain. I also had a severe cold that I could not shake for about 6 weeks so I'm unsure if the joint pain would have persisted had I not been dealing with the early stages of pregnancy along with a lowered immune system with my cold. But those were my main ailments. I also dealt with many dips and spikes with my thyroid. I believe most of this was caused by my existing medication, Armour Thyroid, along with the fact that your TSH dips when you are in your first Trimester as it is working overtime for growing a baby. Before getting pregnant, I was taking a significant amount of Armour. By my 2nd trimester, I had dropped my dosage to 1/3 of what I was originally taking. This was actually counter-intuituve to my OB and the super-dumb Endocrinologist's thinking as they only want people taking Synthroid and never wanted me to take Armour. Through my own research, I learned that Armour increases your T3 which can lower your TSH reading. The OB was concerned about my near non-existent TSH was affecting the growth of the baby so I got referred to a high risk doc who bashed my Lyme treatment protocol and put me in the category of 'typical high risk'. This means, regardless of the info I was giving him, he was just going to 'go by the book' of his regular treatment of high risk mommas. So, to save myself the trouble, I dropped that guy and told my OB I'd rather just keep up with monthly ultrasounds in her office until she sees a reason to direct me back to him.
Believe me, folks, while I sound confident in my synopsis of this time, I assure you each step was filled with worry of if I was doing the right thing. Again, my experience with Lyme Disease has brought me closer to relying on reasoning, practical thought, prayer, and not always a doctor's "just because" protocol.
Because of the extreme fatigue, I never felt like I got that burst of energy that most people enjoy in their 2nd trimester. But aside from that, my 2nd trimester was pretty typical in terms of symptoms. My thyroid leveled out, I dropped that Endocrinologist, and moved on. Enjoying the kicks, the movement, and the growing and growing and growing of my baby belly. :)
By my 3rd trimester, I was DONE. I will assume this is from being pregnant before and nothing really to do with Lyme. When you've navigated the trail of pregnancy before, there's nothing magical about the ending weeks. You are just ready to not be pregnant, and more importantly, ready to hold your baby.
I stayed on my antibiotic the entire pregnancy and have continued with the same one postpartum. I believe I will need to switch soon but don't want to throw anything new into the mix until I have my bearings. Functioning on little sleep can rock me physically and I don't want to assume my meds aren't working just because I need a nap. :)
The best part of the ending weeks of my pregnancy was the confidence God gave me as new worries were presented to me. That sounds weird, right?
However, I believe that God used these new worries to show me how normal I'd become. How much my life was not covered in Lyme Disease issues but 'normal people' issues. This may be strange to comprehend, but please believe me friends, I know it is true:
During the final weeks, my OB was anxious to get my baby OUT. As I mentioned before, I was ready to be done too. However, I firmly believe that babies will come when they are ready. Especially in my case, as I don't have direct medical reason to induce or have a C-section. My doctor has a hard time being patient and the last few days approaching my due date we verbally wrestled where the baby rightly belonged, inside or outside my belly. She made strong efforts to push me into induction by having me undergo many ultrasounds and tests, hoping to indicate SOME sort of leverage that meant I would be wrong to turn down an induction.
So, in the end, regardless of her tactics, once again, I had to rely on reasoning, practical thought, and prayer. This brought me closer to God and gave me more confidence in myself. This confidence also came from the fact that I had to admit, I am doing 100 times better than I was when I was first diagnosed with Lyme.
YES 100 times better.
Lyme friends, let this be a hope for you.
Am I scared that my symptoms will come crashing back into my life? You betcha.
Especially since my first symptoms started at the END OF A PREGNANCY. Why wouldn't I think that it could happen again? Am I going to let the worry consume me? Absolutely not.
At this point in my Lyme Story, I've had many points of sadness and despair. I've also had so much growth and even happiness and restoration.
I've heard of people going through a relapse. And is seems so sad, especially when you read their account online and see the joy they are experiencing just to find that months or years later they feel like they are back at square one.
So, am I scared?
I can be scared of many things. I won't mention the other things we wrap ourselves in fear of. But we all have them. We all know that there's no guarantee what tomorrow brings, Lyme Disease or not.
I know that today I get to breathe in my newborn baby's wonderful sent. I know that I get to hold his tiny hands and cup both of his long but miniature feet into my one hand. I know that my family is all filled with joy to have this new person bring joy to our lives. I know that I get to laugh, and love, and enjoy my family and friends.
Anything beyond that, I can't worry about it. I plug along, I take my precautions with taking care of my body, mind, and soul. I hop into this crazy life roller coaster, strap myself in, and enjoy the ride with my arms outstretched. I'll be thrilled during the highs and ride out the lows taking in each moment as a gift from God.
Every day we are different. Even if we think we're the same, we're not. Something new shapes our thoughts....or something old concretes our ideals. We never stay just the same. I've looked at this blog and thought, "How can I catch myself up from my last post? So much has happened in that time!"
Just know I'm different.
But, also, YOU'RE different too. Don't think that I'm singling my changes out to be something overdramatic, like an experience that is unfathomable. That's not what I'm saying. I'm just saying when I look back at past posts, I'm always different from that woman who wrote the original. Sometimes that's good. Sometimes it's not. Let's just say I'm constantly "under construction".
The biggest difference between now and March 22 (my last post) is that I am pregnant.
This is a blessing. An overwhelming joy. A praise to God. I am in utter amazement that I am here today with a baby boy in my belly.
Just like with my Lyme Disease, the reactions to my news have been mixed. While I've had a handful of joyous moments (my friend screaming at the top of her lungs in the back of the car as I sheepishly delivered the news.... And my mom, who cried tears of joy when she found out), some don't understand how fantastic this experience actually is for us. A few are apathetic, a few people have actually reacted in a strange way: like hurt, or upset, as if my pregnancy or the way I shared it was supposed to define my relationship with them.
It's hard not to have a circle of support that rejoices with you. But, again, I haven't necessarily felt an actual circle of support when dealing with the Lyme. So, I'm learning. I'm learning to appreciate what I DO have. Taking people's genuine efforts and cherishing them. And casting aside everything else.
The other thing that's been difficult is coming to 'explain myself' to others. I guess in their minds the looming question is, "You've still got Lyme, right? Didn't you say you can't get pregnant while sick?"
So, while I haven't had the support I've desired, somehow I still OWE people something for the care and attention they've offered. At least, that's how I feel. It's a difficult thing to process.
Here's the answer to that question in case you're someone who feels deserving:
I'm still Lyme sick. But God is in control.
The thought process that my doctor led us through was this: I had to be 6 months antibiotic free and symptom free before I could say that Lyme was in remission in my body. This was the goal. However, that goal still looked a long way off. I still have rounds and rounds of medications to try. Even at it's fastest timeline, this would have put me pregnant at the beginning of 2015, but likely later than that. THEN, regardless of when I got pregnant, I was to be put back on antibiotics as a preventative for the fetus (because if you remember, Lyme doesn't get eradicated, it goes into remission). And even THEN, it's likely that postpartum issues can trigger Lyme again. Putting me back on upwards of a 2 year regimen of treatment.
So our (me and the husband's) thought process became this, "If you have to go back on ABX anyway, what are we waiting for? You've been feeling pretty good. This is the best you've felt in your 2 sick years. So, why not just try for a baby now and if God doesn't want it to happen, it won't."
Well, it happened.
And in the first trimester my sweet husband regretted his words. I felt sicker than ever. Not morning sick, Lyme sick. Fatigue that was unreal. Thyroid problems. Muscle pain. Stress. Stress. Stress.
Stress over symptoms meaning they are attacking the baby. Stress over all the new doctors I'm seeing and how they (again) just don't get it. Opinions about MY situation being thrown at me like fiery darts to burn at my confidence in our decision.
One that will always ring in my ears is an email I got from a fellow Lyme sufferer, "You will most assuredly pass the Lyme onto your baby..."
This person does not personally know me. They only "met" me ONE email before this particular interchange. However, they were confident to diagnose my situation.
Those words hurt and haunted me. I made a choice and this person was telling me that my choice was to give a baby Lyme disease. I felt horrible. Then, I learned from that experience.
First, I learned to evaluate any time I ever stuck my foot in my mouth and said something to someone that could have hurt them in a similar way. I connected with those people in a steadfast manner. I learned to see that, I, like this ignorant person, do not have all the answers and cannot have a black and white stance on everything.
I also took my shaky stance and decided to put my trust back in God.
I can't say with confidence that everything with this pregnancy will be 100% perfect. I have no idea what's going to happen, but does anyone? All I can do is stay positive. And to be assured that God put me here. right now. to have this baby.
So while I wish I had a group of girlfriends that will shower me with love and affection for my wonderful news or how I wish people could hear the glorious trumpets of praise that are reigning from heaven that a baby is formed or how I wish people knew and understood that this was a leap of faith, a blessing, and an affirmation of continued wellness, I don't have that.
However, I know God has His place for me. It's not in the plan right now to be lifted up by others. His plan is for me to be on my knees, praising Him, no matter what the rest of the world may think.
And instead of looking to the next problem or conjuring up the next prayer request, I want to praise. It's been long years of physical/emotional/mental pain and heartache. This baby is evidence that God is giving me a new season. He has restored things in my life, even through stripping things away. He has brought me through (but has not eliminated) my sickness. He has given me peace.
Lyme, for me, has been a very emotional disease.
If Lyme had it's own word cloud, I think some of the most used words would be: misunderstood, lonely, and depressing.
I know a few weeks back I said, "I'm back to caring." But you know what? I'm not.
The further I get from this disease, the further I want to be near anything associated with it.
I'd rather drag along my proverbial Lyme stumps than to admit that I can't function.
Because, you know what? NOBODY CARES
Honestly, they care in a far off way. Like they always have. But in the end, when I can get a chance to be like the rest of the world, I will stop caring too.
Just like everyone else....
I will stop caring about my Lyme.
I will pretend that it doesn't exist.
I will move on and not think twice about it.
I never understood why I couldn't find a single well person out there on those Lyme message boards. Then I realized that anyone that was well or cured is not going to stick around to encourage people. They just move on with their ives. I vowed to stick around, to be a source of hope. But I can't promise that anymore. I just desperately want to be NORMAL.
Please God, let me be NORMAL.
I'm turing into what I hate. And yet, as I turn into an ambivalent bystander, I still hate those who turned their backs on me.
Here's where I'm at.
I desperately have wanted another baby since my sweet Milo was 6 months old.
He's 2 and a half.
That means for 2 years Lyme has told me "no". In fact, sometimes I feel like it's telling me "never".
Here's another place where I'm at.
I've longed to work out regularly for 2 years. I try. I get horribly sick and have to rest up and recuperate.
I wish to run. I wish to be in marathons. Ok, not really. But I'm so mad that this stupid fad of running marathons and 5K's are happening RIGHT NOW- right when I can't keep up.
But I want to be strong. I want muscles again. I want stamina. I want to enjoy working out. I want to know it's helping me, not hurting me.
Here's also where I'm at.
I want some people to acknowledge me. Not just in a text. Not a "(((((hugs)))))) Facebook comment". Not by asking my husband how I'm doing. I want face-to-face inquires of how I'm doing.
What is wrong with these people?
I'm also at the end of my rope.
TWO YEARS! two WASTED YEARS!?
I've been on the meds. I'm so tired of this. I want to be done just like everyone else was done with me. Can't I please be done worrying about my medicine, my diet, my sleep, my stress level, my health? Please, please, please? Can someone else just do the work for me?
Finally, here is where I've settled.
I know that people don't 'get' Lyme. In fact, you don't 'get' it until you get it.
I know that I've literally lost friends because of Lyme. Not people that died, mind you. These were people that basically found me too hard to befriend once I got sick. I'm still bitter about it.
I know that this post is direct contrast to my previous post.
I know it makes me sound wishy-washy.
I'll be honest with you. I have social media ADD. In the middle of writing this rant, I traveled over to Facebook because I heard a notification ping my computer. It was someone commenting on my previous post. They appreciated my honesty and they are a Lyme sufferer also going through some symptom relapses. I re-read my post. I know I am not alone. I have people who care. I am certainly wishy-washy.
And if I get a chance to travel down the spiral of self-pity and despair, then what you just read is what gets echoed in my head over and over.
And if I get a chance to travel down the spiral of self-pity and despair, then what you just read is what gets echoed in my head over and over.
And if I get a chance to travel down the spiral of self-pity and despair, then what you just read is what gets echoed in my head over and over.
Thank goodness for social media ADD! I'm glad that dear reader who commented reminded me of my previous post. :) I'm glad to be reminded that it's not constant rain. That there's a break and sunshine between the storms. However, I'll leave with this:
Have you ever been to a funeral and you see people laughing, remembering the dearly departed? During those moments, these people who are so close to breaking down, wishing they could even die themselves because they can't take their loss are laughing. They are now smiling, maybe even laughing at a joke or a funny memory of their loved one that passed on.
It seems so.... wrong.
Laughing? At a time when we're supposed to be sad?
Think of it this way. Taking a brief moment from grief to give their heart a rest from being so broken does not mean that sorrow ceases. It's a brief moment that is sometimes necessary for the grieving process to continue. It's a way to 'come up for air'.
Being part of the sad AND happy times is what grieving is all about.
In the same way, I grieve over my loss from Lyme. More often than not, I'm the "only one at the funeral". And please don't think for a moment that when I'm laughing, remembering a good time, or enjoying a positive moment that the sorrow has ceased.
I won't let others compartmentalize my feelings. And I won't be in the habit of doing it to myself.
So, Wishy-Washy may be a bit hard to keep up with....but right now it's genuine, it's honest, and it's me.
My heart is so full.
I was prayed for by a client yesterday, while embraced in a big hug. I got heartfelt emails and messages from friends that were concerned. I was offered support from a friend and guidance via Joseph of the Bible. My kiddos were taken to a fun neighbor's house to play instead of being 2nd place to my symptoms. Lunch was delivered today by a good friend. And the hubs and I are getting a chance to have some time together tonight because of my loving sister and brother. Sometimes I feel alone. Other times, I feel overwhelmed by support.
I stopped taking abx the 2nd week of Jan. Then, I got two bouts of strep and norovirus.
I don't think those are Lyme or 'being off abx' related. But, it sure made it hard to tell how I was doing without the drugs. Then, I get one glorious week where I'm not dealing with a single symptom.... cold-related or Lyme-related.
Then the next week the symptoms start back in.
The biggest one is being 'underwater' or 'in a different time zone'. It's like I'm here physically with the rest of the world but other than that, I'm on a different planet mentally. I can't think straight. My vision is back to being sucky. A bit of contrast sensitivity and I've noticed some blurriness too. I've got headaches again. I just feel tired. Small sounds are very annoying. And I am very sensitive to an overload of commotion or activity around me. It makes me feel overwhelmed and slightly drunk and sometimes dizzy. The final, and most telling of my symptoms (that they are Lyme-related) is that my gums and teeth are numb. Strangest and stupidest symptom by far. Who has that?!?!? Only someone with Lyme, I guess.
So, I've gone back on the Minocycline. At this point, I'm just taking one every other day. That sounds like it wouldn't make a difference but this is the time of year that I'm swamped with photography work that I can't afford to herx.
This month is the kickoff of the busy season for a photographer. I often wonder/worry if people will stop hiring me for photography or worry about me photographing their event if they see something that makes them nervous about my health on FB. I have a wedding to shoot soon and my thought was, "Wait until after the wedding to start treatment and risk feeling worse than I already do from the sickness or start meds now and risk herxing during the time I need to be working?"
But today. My heart is full. I'm refreshed. I'm still sick. But I don't feel alone. I feel 'helped'. It makes all the difference people! If you know someone in your life suffering with something, even if it's small, just give the encouragement any way that you genuinely know how.
Those small, medium, and large, doses of love have helped me feel not so down. My symptoms are hitting me full blast today but I can push them aside and only feel love.
I am grateful.
So, I've got a bit of a confession to make: I hate my Lyme so much that I choose to ignore it exists.
What I mean is, when I have to acknowledge it, then I have to treat it. Like a person with a drug or alcohol addiction or an eating disorder, if they have to admit there is a problem, then they also have to change their behavior. The past 6 weeks I've been DONE being a "Lymie".
(I have a love/hate relationship with that term: http://www.constantlyunderconstruction.com/1/post/2012/04/gag.html)
These year, I decided to go off ABX after 2 years of treatment because I'm sick of worrying about every little tweak, every little symptom. Wondering if this is a herx, a side effect of meds, or another relapse of my disease. I am so DONE. Nobody else cares, so why should I?
But tonight, I read Steven's Lyme story and it reminded me of my own journey.
I think the part that hit me the most was when he was at his lowest point, barely getting through a workday and having to pretend he was ok. People could tell he wasn't ok but they just didn't understand how NOT ok he really was. They talked about him behind his back.
I can't say for sure I experienced that sort of social treatment from others but I do know the feelings he felt during his journey: the loneliness, the despair, the anxiety of not knowing, the confusion, the physical shortcomings and pain.
Steven was THE very first person who had Lyme whose voice I got to HEAR after a year of suffering alone on my own. It was this time last year, when we talked and he shared with me his experience with this horrible disease. I was at a point in my treatment where I was frustrated (<-----can anyone relate!?) and there wasn't one specific thing he said or did but connecting with him encouraged me to push on. That phone call carried me for a long while and made me realize I wasn't alone. Having his symptoms and situations echoed back to me were just the thing I needed to continue.
Today, as Steven continues with much enthusiasm to put together the best Lyme Rally possible, I realized that my heart wasn't totally in it. And it was because of the reasons I first mentioned. But I want that to change. I am so grateful for my friends who are on board. Thank you, sweet friends, who've agreed to stand with me and the rest of the Lyme community for one day to raise awareness. I hope we get tons of media coverage and that this could also potentially change protocol within the medical community. It's my hope that the awareness that will be raised will create that feeling of encouragement that I had the day Steven and I talked on the phone. And it's my hope that that sort of encouragement will carry other Lyme sufferers on as they continue toward wellness.
I often reflect on my Lyme situation as The Boulder I carry on my back on my path through life. It's a little "Pilgrim's Progress", I know. But that's how I imagine myself.
On hard days, I think;
"If only I could chip off just a stone for each person to carry. Then this Boulder wouldn't be so heavy."
"If only each person could help distribute this weight. I would feel so much lighter for it."
"If only the people who are 'close' to me could carry a piece so that they could share in what I dealing with."
Most times, on my journey, I encounter many many people as I piggy-back my Boulder through the road of life.
As I travel to the different cities of Life I find my Boulder is always present.
Cities like, "Parenthood" where I raise my kids and try my best not to let the weight of my Boulder spill into my attitude of the trials of everyday discipine and love.
Or to the city, "Employment" where I often keep my backpack of a Boulder concealed to many clients.
Often I like to travel to the town of "Social Activities" as I attempt to pretend that my Boulder sometimes doesn't exist.
And I frequent (begrudgingly) to the most boring town "Responsibility" where cooking, cleaning, and laundry are the least fun.....even WITHOUT a Boulder on your back.
Along the path, people see me trudging along, bent over at a 90 degree angle, walking slowly, struggling to carry my Boulder. As I walk by, these people look on with sympathy and call out, "I'm sorry!" as I pass them.
Their voices get smaller and smaller as I continue forward I hear, "I'm praying for you! ...Let me know if you need anything!".
"Thanks!" I smile with a wince and keep moving forward, bearing the weight, and they go on with what they were doing.
Some people look on silently, thinking, "I have no idea how hard that is. I can't imagine what she's going through. I would do something, but what?" I feel their presence. I even hope that they are thinking of me. But, sadly, I will never know they care.
Sometimes I've had people take a stone, carry it for awhile. As they carry a fraction of my Boulder and watch me carry the majority. Time moves on. As we continue down the path, while we're walking together, it doesn't feel like we're together. These stone carriers are 'doing' but not 'being'. Their gaze is averted. Their thoughts are on something else. They can't wait until their "good deed" is done. Or maybe that's not always the case. Life gets in the way. My stone-carrier friends have their boss, or their spouse, or their kids run up and grab their attention. Either way, eventually, they walk away. They don't stick on the path with me.
Some people will walk beside me or will jog by.
On their journey, they glance over. They see that I'm managing.
"Sure, it's hard," They say, "But you're doing it. And you LOOK SO GOOD (<----- by the way, worst thing ever to say to a Lyme sufferer. You've just single-handedly undermined their hardship and told them that they must not be suffering because they aren't "dressed the part".)
So, these people go on about how great you look and say things like, "It's hard to imagine that you're actually carrying such a huge Boulder! You manage it so well. I don't know how you do it! You really look great. You should take that as a compliment!!!!" They move on and forget about what a hardship it actually is to carry something so heavy and it becomes deceiving to watch me carry my Boulder so 'effortlessly'.
Sometimes, there are offers. Genuine offers. Willing people. But they still don't give the right things. They don't want to step on any toes. They don't really want to step, period. They stand back. But they are willing.
Let me just inform you, when there's a Boulder on my back, I don't have the strength to direct the help. I don't have the ability to think through what I need. Some of those genuine offers get wasted on waiting for my commands. These people would be helping if they had direction but since don't they just. don't.
Sometimes I just need a person to step in, take a chisel, and chip off a piece of that Boulder....
And freakin' chuck it into oblivion.
Sometimes I need someone to chip off a piece and look at it and tell me how much it sucks that I have to carry 100 times more than they are holding in their hand.
Sometimes I need someone to pray that Jesus will come and pick up my Boulder and carry it for me for a couple of hours, days, weeks.
Sometimes this happens.
Sometimes there are people in my life that have a Boulder. And they can tell me how strong their backs are now. How long they can endure the journey of life because of it.
Sometimes I've been able to set the Boulder down. Roll it a few feet. As I do, I'm able to be the person that can come along another "Boulder-Carrier" and say, "I know it's hard."
But, somehow, even if I can get that Boulder off my back for a short time, wether it's Jesus carrying it for a spell or rolling it as to lessen the bearing of it's weight, it always ends up on my back again.
I know we've all got things we carry. Some Boulders are much larger than others. Some of ours are smaller. Some of us are too busy concentrating on the weight of our Boulder to even see that it's not as unbearable as it could be. I understand all that.
But, for me, it's not the Boulder that bothers me. It's not the fact that I may always have to carry it. It's the loneliness that comes with it. That is worse than the actual Boulder.
Oh, I know I've come across many, many people on my journey. In terms of numbers, I know a lot of people. Most of them know my plight. But that doesn't make me less lonely. The difference is sharing in the journey, not just seeing me on the path. While expecting every person I encounter to take a peice of my boulder to lighten the load is unrealistic, wishing for a few solid, solid friends is not.
The loneliness that Lyme brings is so overwhelming. You've heard me say it so much I fear that you will tire of my voice.
Knowing people are reading this isn't going to make me feel less lonely.
For me, writing is just part of me that needs to scream from the rooftops, "I'm just surviving! Don't you know that?! I'm trying each day but I'm just.... surviving."
Don't mistake this blog as a way to update my friends and family without them having to actually talk to me. This isn't some long, drawn out, weird form of a Christmas letter. But in a way, I feel like that's what this has become. More and more people I ACTUALLY know read this blog, they get to know my innermost thoughts and then toss them aside like I haven't just poured my hurt, my smallness, my shortcomings, my pain and my weaknesses out for all to see.
Why do you think I've been absent from blogging for so long? It's not because I'm physically better. I've just found that I am no longer in a safe place to express myself fully. My audience has been opened to people who have to look me in the eye and ignore my pain. I've stopped writing because couldn't bring myself to exposing my heart just to have it ignored. Believe me, saying THIS part is heart-wrenching enough.
If you are my "friend" and you find yourself reading this instead of connecting with me directly, shame on you. If you're my family member and you haven't taken the time to help or understand, yet you're willing to peek in on my private thinking, shame on you. If you've been a voyeuristic coward, shame on you.
If you, dear reader, do not know me personally but you feel compelled to change your actions toward those with Lyme or another chronic illness, I applaud you.
And if ANYONE is convicted of their actions from reading this, I encourage you to act on that thought. Please be willing to chip a piece of your friend's boulder off and just hold it. Let the weight of it sink in, share in their pain, and then wrap your arms around them. Send your prayers for them up to the heavens and tell them they are on your mind. Keep them close in word and in deed. It's not terribly difficult to connect with someone. However, you'll never know how you can lift someone up who really needs it until you first take the step of being there for them.
For years, maybe even for my whole life, I've wished for a best friend.
A real friend who cared about me and I cared about them.
In grade school, I've wished for slumber parties, bff heart necklaces broken in half, someone to always sit with at the lunch table.
In junior high school, I've wished for a girlfriend that I could talk to about boys, periods, first kisses.
In high school, I've wished for a best friend that stuck by me, that was my other half, that loved to catch up on silly things in life.
I've wished for a shopping buddy, someone to tell me those jeans look horrible on me, someone who would inspire my fashion choices.
When I was getting married, I wished for a friend who would be excited for my new adventure, who would throw me a shower, who couldn't wait to see me marry the love of my life.
When I was pregnant, I wished for girlfriend that was pregnant with me, whose baby could be the same age, where we could all go through this journey of parenthood together.
And as time went on, I've wished for a honest confidante. Someone who would tell me the truth when it hurts, who would hug me when I'm sad, who would be mad at the people who have done me wrong and who will come over with ice-cream to talk about it or just watch a movie.
I've wished for all these things. Sadly, I've had none of them.
I've had friends. And people who have made grand efforts. But I am not embellishing when I say I have never had a true best friend. Nor have I ever experienced anything like I have described. When I had kids, I thought I came close, but those friends already had their best friend. I was just one really fun playdate friend. Maybe because that's the stage of life I've recently been a part of and found disappointment but I really had high hopes for this time. I just thought, "Hey, on paper, it all makes sense. We have kids the same age, have similar schedules, worries, desires...how could I not make a best friend this way?"
Ok, but really, who's piece of paper was I looking at?
Because really, other than kids being the same age, I don't have much in common with most of those moms. But I was desperately trying to fit a square peg into a round hole and call it friendship.
My schedule is nuts (whose isn't!?) but for a different reason than potty training and laundry. On top of potty training/laundry/mommy duties, wife-y duties, and general adult / homeowner duties, I'm also a driven business woman. Oh, with Lyme disease.
That's a little bit complicated, right? It's difficult for so many reasons but mainly because it's just honestly not easy to have friends with people that you don't have much in common with. I realized I WANTED to play the role of stay-at-home mom but without the pesky staying-at-home bit. And I WANTED to be Miss Successful Business woman but that pesky husband and those kids kept getting in the way. Then, boom, throw Lyme on top of it all and let's see you try to function. Try to go grocery shopping without having some sort of setback like dizziness, brain fog, joint pain, or light sensitivity.
A full life of home and family and business clouded with a debilitating disease doesn't make of an easy road to friendship.
Or does it?
Today is one of the many days I thank God for my hardships. Today, I am thankful for every loss, every pain, every lonely moment, every bitter thought. Today, I got to sit down with a friend that really needed me. Today I was the bright spot she needed in a dark season of her life.
I'm not in the mommy club. I'm not in the BFF club. I've never had a gal-pal that's with me through it all thick and thin. But somehow, I've found my club.
A while back, a dear friend of mine whose husband was killed in a car crash said something to me that struck a huge cord.
"Though our losses may not have been the same, they are still connected by grief."
I'm in the grief club.
Sounds morbid? It's really not. It's so whole, and honest, and refreshing, and sometimes grieving is the purest form of living in a time when you feel like not existing.
And, you know what? Through all my goals to "have it all" as a wife, mom, photographer, and a hairstylist with Lyme, I've found my spot. I've connected with people more 'like-minded' than me than I could have imagined. I've found people who value me for more than a breastfeeding milk machine, a good beauty operator, or even someone who's so happy that I photographed their wedding or birth of their baby. I've been blessed with some great people that God has placed in my life that have allowed me to 'grow up' and to 'become who I really am'.
While I still long for that steady, constant best friend. It's moments like today, when I get to intimately connect and comfort a friend, I feel like the idea of a real true best friend is more of a reality than a dream.
Depression is not a character flaw. Neither is Lyme.
I'm learning those facts slowly but surely as I trudge through the symptoms and setbacks that both of these illnesses bring.
I've tried to ignore my Lyme. For awhile, I've been doing great. Very little disabling symptoms. Sure, fatigue. Definitely still having to keep on top of my treatments. I haven't been free. But I've been able to ignore it. But after awhile, even that's not good enough. I just want to be completely free. No hassles of taking my medicine, making sure to detox, eating clean, getting rest, portioning out my energy and prioritizing events and tasks to make sure I can perform.
I've tried to ignore my Lyme. But now, it's back. No matter all the efforts I've put into all my regimens, I'm sitting here with unbearable nausea, light sensitivity, attention problems, fatigue and depression.
It's hard to admit when you're truly dealing with depression. It's not just a feeling of sadness. It's also anxiety, anger, wanting to completely jump out of your own skin, abandon everything to relinquish the pain, and sometimes the inability to feel any joy at all.
But, today, I realized that being depressed, just like having any ailment: sore throat, diabetes, Lyme disease or cancer.... is not something that you 'snap out of' or something you feel embarrassed that you are dealing with.
I've also realized that dealing with a mental illness like depression is not a character flaw. It's not WHO I am. It's something I deal with. It's not something that clouds my whole existence. But lately, it's clouded my ability to enjoy life.
Unfortunately, sometimes those around me are forced to deal with it as well. And that's sad. I'm sad for them. I'm sad for me that I do that to them. I'm sad for myself. When my Lyme symptoms are at their worst, the depression is hardest to deal with. This is where I am as I write to you today. I could easily cry as I write those words. No matter how I tell myself that everyone has it hard, that there are worst things I could be dealing with, it doesn't lessen my own pain. And look, I know that Jesus is with me. I know that God will bring me through this. But it doesn't minimize the pain. Did Christ's suffering on the cross stop when he took the time to focus on *why* he was going through the pain? No. It was still there. My point being, please don't throw out phrases of Christianity in hopes that it will make me feel better for good. It doesn't. What gives me comfort (from you) is knowing that I'm heard and knowing that this is genuine.
When I watched Under Our Skin, I couldn't just pop a bag of microwave popcorn and cozy up on the couch. I'm not wired that way even when I watched "Bridesmaids" or "The Vow". But when I watched this particular movie, I had it on while I messed around on my computer.... and by messed around I mean edited my personal photos, cruised Facebook, and I 'took notes'. I don't know if it's just that emotionally I couldn't give my undivided attention to it or if it's really that I can't sit still....either way, it was my way to cope and to listen at the same time.
The statements and phases you read above are the result of my 'note taking'. The day I watched that video I wrote down everything that rang true in my own life regarding Lyme. If a phrase that was uttered in the movie pierced my heart or moved me to tears because I felt the exact same way, I typed it out.
So, in the best way I know how, this crude informal list of notes is my 'take' on the movie.
Please. Take a moment. Don't just race through this list. Sit on each one of these facts. As I typed those items, those sometimes-horrid-facts represent the weight of my Lyme World resting on my shoulders. They weren't just mere statements. In fact, I could write for hours on small phrases like, "Co-Infections" or "Neurological Issues". But I won't. Not today anyway. :)
Some of my friends have been gracious enough to take the time to watch the documentary themselves. As, you may have read in my previous post, that truly *means the world*. THANK YOU for connecting with a disease that has plagued me. THANK YOU for taking time out of your day to learn more about something that needs to be changed. THANK YOU for educating yourself for your own health and safety and THANK YOU for becoming aware so that maybe you can help someone else.
If you've watched Under Our Skin, let's get a conversation going, shall we? Tell me in the comments below what you thought. Or better yet, if you've got a specific (or even personal) question for me, please let me know. I'll be happy to answer it!
And if you haven't watched it, may I implore you to read my last rant and ask that you set aside an hour to do so?
The more you know, the more likely you are able to help!
Hello out there! Guess what, I've still got Lyme.
If you know me personally, (and that's not saying much as I've got numerous Facebook friends which I'd lump into that category) you probably have forgotten about me and my Lyme ailments. Well, guess what, they're still there! Just because I'm not crabbing, worrying, or complaining about it on Facebook doesn't mean it does not exist. It does. (and it certainly doesn't mean that my husband is free from hearing my burdens and sharing them with me!)
Today's post is a focus on the negative. Here's why I feel ok with this: For today, I have to work really hard to be negative and that's a really really good thing.... but I just thought I'd remind people that it's still there. I'm still hurting, I'm still bitter, I am still plagued with Lyme and the crap that goes along with it. There have been so many times I am careful with what I post, how MUCH I talk about Lyme, who I let in. I try not to overburden people with my Lyme Crusade or become labeled as that girl who has Lyme. But, as I write, I want you to know, my Lyme journey is still happening.
Sure, I'm getting better day by day. And with each good day, it makes it a little easier to be ok with the friends that don't understand my ailment, or the people that still, STILL don't understand Lyme, or the fact that I miss out on so much because I'm sick... but again, it becomes less of a problem on the 'good days'.
I noticed that when I'd read another person's Lyme blog, I would feel comforted by their frustrations and their burdens. Tonight I hope that another Lyme sufferer knows... I'm suffering with you. Really. As I suffer, I'm going to choose not to just feel sorry for myself but also for all those other Lymies out there that are misunderstood and misdiagnosed and in true, true pain. It sucks! It's lonely. It's frustrating. It's embarrassing.... feeling like you have a made up disease because doctors are unaware. It's tiring to explain to those people who just don't get it. It's overwhelming to help other people understand who WANT to get it.
I'm with you, Lyme friends, I'm thinking of you too. You're not alone and you will have better days. I've noticed that I'll have patterns or cycles to my symptoms. It's encouraging to feel some sort of control. Hopefully, one day, I'll be completely symptom free... but right now, I'm in emotional, physical, and mental pain along with the rest of you.
For those of you not plagued with this disease, the BEST thing you can do is become aware. Being aware for yourself is lifesaving. Being aware for your friend with Lyme is life-affirming. You give us purpose. I won't mind being an example if I can help you. Please do me a favor, friend of a Lyme sufferer, and watch the movie Under Our Skin. Read this blog. and this article. and watch this video.
You will touch my heart, save a life, bring awareness, and empower yourself with these simple actions.
Lyme Disease turned my life upside down in 2010.
This journal is for me.
...but I also hope it helps you.
p.s. I'm not a doctor. I don't offer any solid medical advice. Just giving you my experience.