Trying to Take Back Christmas: Grieving and Changing Traditions (Another U-Turn)

Every year when Christmas rolls around, it's like I'm on a zipline that's about to go off the cliff. I'm deathly afraid of heights, so it's not something I would do willingly. But that's just it, Christmas comes every year and every year I face the traumas around my daughter's death one week before Christmas. So here I am, strapped to this zipline at the top of the cliff and Time pushes me off and all I can do is close my eyes, hang on with all my might, and wait for it to be over. And just like every year, when it is over, I open my eyes to a mess of Christmas decorations that I get to tear down with all the bitterness of my heart. 

Believe it or not, Christmas used to be my favorite. I couldn't wait for Christmas to come. I decked my halls with a lot more than holly! Red and green colors would burst from every corner of the house. But the grieving journey has other plans for me. For whatever cosmic reason, I decided to change my color scheme that year to blue and white. The Christmas tree hung tons of blue and white balls and it was beautiful. It was one week before Christmas, we were at my mom's house putting together Christmas baskets with goodies. My daughter Sarah died during her nap in my mom's room that afternoon. After we got back from the hospital, without her, I spent the whole week in that very room, breathing in what was left of her spirit. The day after Christmas, we finally came home for the first time. Sarah's nickname was "blueberry" because of the blue hemangioma on her nose and our tree with all it's blue balled ornaments, looked like a blueberry bush. At that moment, I saw it as this beautiful message that "Sarah was still among us for Christmas." That was my beautiful reminder. For years, I would put all those blue ornaments on the tree, faithfully bringing her message back to us. It was comforting. 

But then something switched in me. I got really sick and extra sensitive to everything around me. I stopped celebrating her birthday the way I normal would. All the things I did over the years to help me cope with Sarah's absence were now incredibly hurtful. I had needed those things during those years, and now I didn't. I needed something else now. I'm still sorting through certain triggers around Christmas, but a big one this year were those damn blue ball ornaments on my tree that no longer made me feel her, they made me feel her absence all the more. They took me back to that awful day when we came home for the very first time with empty empty arms. Those balls reminded me now of my emptiness, that hole that no God can ever fill until I see her again. 

So after talking with my wonderful therapist, I decided to not only take them off of my tree, but to destroy them. Just me and my husband set out to destroy this awful trigger. I stood at the tree and bagged up all the blue balled ornaments of that awful day and started towards the back door. But I was stopped by my 12 year old son Isaiah. The only child that was actually here when we lost her.

"What are you doing with those?" He asked me, staring me down. 

"I'm taking them down and getting rid of them this year." I tried to be delicate with my voice. 

"No! No! No! Put them back! Put them back!" tears were welling up in his eyes. The desperateness in his voice broke my heart and I started crying with him.

I didn't even think about his feelings with these.  "I'm sorry sweetie, but I have to do this. They are too painful to keep. This is something I have to do." 

"Put them back, please, put them back!" He just kept repeating it through his tears. After that I took him to a private place so we could talk and it was decided, after both of us bawling, that we would put a mini tree up in his room and he can keep one single ball from the bag. As a mother who understands that he has his own unique journey of grief, I had to compromise in this.  

So with my heart now torn to shreds, I went to the garage with my husband who had a tarp down and ready and we smashed the shit out of those ornaments. They were not easy to break either, because they were plastic. Especially the ones that we more solid plastic. It made us angry that they weren't glass that would break easily. But that's just it, isn't it? It's not easy removing triggers from your life. I can smash these ornaments, but the traumatic memories they triggered will always be there. I felt like this was our ceremony of trying to "take back Christmas." This time of year will always be hard, but I want to love Christmas again. I can't promise that this will do it, but it will definitely help. And it's already easier to breathe without staring at those ornaments all day, every day. 

My encouragement to you, if you struggle with grief this holiday season, is don't let traditions prevail if they start hurting you. My husband even added, "Well, it's like we always kept putting those ornaments up for tradition so we don't offend ourselves." Allow things to change as you change. It's okay to give yourself permission to do so. Life changes us so much as we continue to grow and experience new things, new trials, and new victories. Let these traditions change with you as you need them to, in order to cope the only way you know how. 

~Love yourself enough to prove it. 

SIDS Awareness: Sarah's 10th Birthday

So....

Fall is apparently "Everything Awareness" season. It's all over the place, mental health awareness, SIDS awareness, suicide awareness, cancer awareness, Cranio awareness.. the list goes on... Has anyone else noticed this? So I've decided to write an "awareness" blog for each thing I've personally or closely have experienced. This will be my assignment this fall for myself, so tune in to all my different testimonies and stories along with various info that may or may not be helpful to you. (hopefully it will be) Also, I have picked up many new followers on facebook (Thanks so much for your support!) who don't know all of my stories so everyone is in for a depressing treat! Ha. Only sorta kidding. My hope is truly to inspire your compassion for others that go through these things, while giving yourself grace in whatever you are going through yourself. You are not alone.

Since my daughter Sarah's birthday is today, I'm going to start this kick-off with her! She would've been ten years old. I can't believe she'd be that old. She was such a perfect little baby (except for the fact that she woke up at 4 am very regularly), but she was truly an angel. I could take her anywhere. Nursing her was so harmonious. She was our second baby, but our first daughter. Our son, who was only almost 2 years older, adored her. But one week before Christmas, I laid her down for an afternoon nap and she never woke up. My heart ripped out of my chest and I never got all of it back. You can read the full story of her death here. 

It took 10 long traumatic weeks for them to tell me that it was officially SIDS. Sudden Infant Death Syndrome. Actually, her even more official diagnosis was SUID. Want to know what that stands for? Sudden Unexplained Infant Death. Do you know the difference? Nothing, except she was on her belly.

SIDS or SUID is the toughest pill to swallow. It's one big question. Scientists don't have answers. Doctors have these "risk prevention rules" but those rules don't stop it from happening. SIDS is not suffocation. It's not choking. It's not overheating. (and preventing these horrible things are always a great thing, but it's not SIDS prevention) They literally can not find one logical reason or clue as to why these babies are dying. They have been in beds, in cribs, in carseats, in swings, on their backs, on their bellies, on people's chests... and there's still no answers. Monitors are nice for peace of mind, but they don't save babies from SIDS. (They can save babies who have other conditions, but not from SIDS) I don't say all this to scare you, but to bring to light the realistic facts that us SIDS parents have to live with every day of our lives. It is very scary. Ugh.. these cold facts.

Losing Sarah was like screaming towards a chasm that I couldn't cross. Everything in me tried to bring her back to me. I would have dreams of her "waking back up." In fact, 10 years later, I still have dreams like that from time to time. It physically hurt. My heart felt like a dull knife just ripped it out. I felt empty inside. I felt like a failure. I had never prayed harder in my life when the paramedics were working on her, and the answer was "no." My arms were empty. My breasts were full of milk for a baby that was no longer there. My head hung low for what seemed like forever. I suffocated in my tears. I irrationally hated Christmas for this. (I'm still working on this hate) I hate the baby dolls that look real. I envied families that had all their kids, healthy and alive (and still struggle sometimes in certain respects). So many memories, both happy and horrifying.

For 7 years I stubbornly celebrated her birthday as if she were here still. Cupcakes, and balloons and friends. And now I can't bring myself to get into her birthday at all. Feels like a slap in the face. I still do the "Letting go of balloons" because her siblings demand to be able to give her birthday cards to her. So I've picked my battles.

The hurt is still real and present. And it will always be, but I find that comforting. I don't ever want to not ache for her. The ache persists because my love does. I will carry this brutal beautiful ache with me for the rest of my life.

If you've lost a baby, whether you were still pregnant, or they were infants.... I see you. I know your pain. I know that heaviness. You want to dive in and feel all of it and suppress it all at the same time. I know you not only grieve your baby, but you also grieve yourself. You grieve your spouse. You grieve your old relationship. Take heart and seek one another again. It's worth the work. Time does not heal all wounds, but it does allow the space for healing.

Hope.

There is hope.

My nephew who was 3 months older than Sarah

Not only do I have hope that I'll see her again, yet that is so far into the future. My hope also resides in my present comfort. I have children that give me glimpses of what she'd be like if she were here. I get hugs and kisses from little faces that love me as their mom and insist on remembering Sarah, even though most of them have never met her. I find comfort in my family and friends that listen to my heartache and acknowledge my daughter. I find comfort, still to this day, holding little babies for tired mamas that need a break or are just willing to let me hoard all the cuddles whilst they are around me. She lives in all these comforts. Her sweet spirit is a part of all that Love out there as she is with the ultimate Love. My hope is in the continuing of God's provisions for such comfort and fellowship.

If you know someone, close to you, who suffers with grief of losing a child;
Never stop asking them every once and a while how they are doing or feeling. Maybe it's been months, maybe years. And then just listen and don't be afraid of their tears.
Sometimes, it's no words at all and it's a long deep hug.
Be sensitive to their triggers with the trauma around the situation.
Give them opportunities to honor their child.
Remember their birthdays and death anniversaries, (or Angel Days some like to say)
Honor them on holidays.
Don't be afraid to ask them honest questions. (ex: "Does it bother you when...?" "Is it ok to talk about....?" "Can I do___ for you?" )

Our son Isaiah- 2 yrs old

I want to kindly put out this warning to all family members of parents that suffer from pregnancy/infant loss.... Family members are some of the main people that hurt us the most, simply because the expectations of how we desperately need to be supported are high. Please, I urge family members to never assume anything when it comes to the needs of these parents. Keep these communications open and be extra graceful because these poor parents are already beating themselves up enough, feeling like failures in the worst way, it's a burden that's not fair to carry. Be as gentle as you can. Suicidal feelings of newly grieving parents are very high and usually it's having other kids around that keep us from dying along with our babies. I remember I had this carnal need to stay alive for my 2 year old son.

God has blessed me with 4 more babies after her. All girls of course. It was like God's apology for taking her from me. (I may be just kidding on that one.) But they really have made this life good. It'd be better with Sarah still here, but it is still good. If time has done anything for me, it's brought me time to have a full house of all her siblings and time to continue a rich relationship with my husband.



 "Good night, my love, this moment with you now is ending... 
It was so heavenly, holding you... close to me... 
It will be heavenly to hold you again in our dreams..."
~from a song I have sung to all my babies and still do.

Happy Birthday Blue (berry).

Diary of a Colonoscopy

(Excerpts from a diary of a colonoscopy by Kailan. Dated April 2-4th, 2016)

Day 1: Saturday
5:00pm- I’m nervous. A little freaked out that I won’t be eating anything solid until Monday night. But mostly just nervous. I can’t do this. I can’t do this. I know it's wrong to self talk that way, but I'm unable to change it right now! What will the drink taste like? Will it be poisonous? Will the procedure hurt? What if I wake up? So many questions!

6:23pm- Oh man. Dinner smells good….. But luckily I was smart enough to eat a very late lunch so that I wouldn’t be starving quite yet. So…. The smell is only mildly tempting. ((sigh))

7:41pm- I had my first liquid meal of jello. Green was alright. Orange left a weird chemical taste in my mouth. Ew. Red and purple are my favorite but I can't have those colors with this procedure. Nerve pain is trying to creep in. Hope it stays at bay.

9:16pm- I’m hungry! I want food! ……. And more jello goes in…

11:02pm- My stomach is talking crazy. My anxiety is a little high. Lord, help me not to feel how hungry I am in the morning. Nervous about drinking that stuff tomorrow.

Day 2: Sunday 
7:30am- Shit! I just started my period. That’s a nice little nugget of SITUATION!!! Lord, give me strength. Lord, give me strength.

8:36am- Tried to drink broth. Yuck! Now I feel like I’m legit sick and need “the sick diet.” Maybe that’s a good thing? Ugh. This is going to be a long day. Can you live off jello? I don’t feel well. Nerves are starting to rise. Must find my happy place. Therapist’s orders.

10:06am- Skipped church and started “X-Files” marathon. Watching for the first time. Eating more jello and drinking ginger ale. Oh…. I love you ginger ale.

2:55pm - Must have taken a little nap. Had to get up from bed and break from my marathon to go to my family’s Easter dinner….. This ought to be fun. (and the universe’s way to playing a cruel joke on me) Feeling weak and tired. My fatigue is setting in majorly. Tinge headache still. I’m crossing over from hungry to a little nauseous already.

3:40pm- Distractions galore!! The house smells heavenly of roast and potatoes and carrots. Baby cuddles with my nephews. Seeing faces I haven’t seen in so long due to distance and me being so sick all the time. Glad I dragged my butt out for this. My mom hid chocolate bunnies around the house for all of us. She hid jello jigglers for me though. Thanks momma. It was great. They were good.

6:31pm- Heading back home to the “Devil’s drink” and no, I’m not talking about sweet liquor. Although I wish I was. I’m talking about the stuff that’s gonna make me poo until I’m all cleaned out and can’t poo anymore. I think I’m more nervous about getting all that down than anything.

7:00pm- I did it! 8 ounces of the stuff. Little salty and a touch of milk of magnesium taste to it. It’s unflavored. Not as awful as I thought it would be. Phew! Ok. I can do this. 8 ounces down and the rest of the 4 liters to go!

7:30pm- Second 8 ounces down!

7:32pm- SHIIIIIKSTER!!! I just pooped my pants!!! This stuff is going straight through me!! Holy cow!!! Glad I’m home!! :/

7:45pm- Thanks to a “gag cake” made out of Depends for my father-in-law’s birthday, I now have diapers to wear! They aren’t very comfortable but now I feel a whole lot safer!

8:00-8:40pm- Chilling in the bathroom. It was like sporadically turning a faucet on and off. Ugh.. Pure liquid going in and coming out.

8:45pm- Back to bed, continuing with the X-Files marathon. On edge for when I have to jump back up to the bathroom. Headache meds kicking in though. That’s good.

Day 3: Monday- 
1:00am – woke up. Need to poop again!

7:16am- To the bathroom. I had a decent sleep. Thanks to my antihistamine I take. Feeling drained... pun intended.

8:18am- Back to “the drink.” It's what's for “Breakfast!” Ugh.. Bon appetite!

11:15am- More pooping liquid and officially done drinking anything. On an official fast from everything before the procedure, even water and "the drink." My bottom is sooooo sore and I’m still going to the bathroom. I need this part to be done.

1:17pm- Starving!!! But thankfully, the pooping has slowed way down. Phew!

1:54pm- On the way to the hospital. Husband is talking to me. I have no idea what he’s talking about because my head is all about this procedure. He’s like an energizer bunny. Crap. I just nodded as if I’m paying attention. I’m a horrible bitch wife.

2:15pm- All checked in. You gotta be kidding me?! They want me to pee because they need confirmation I’m not pregnant. I’m so dehydrated. And so angry at this ridiculous principle.

2:30pm- IV started. Warm blankets. Watched Reba on TV. I love her. Then finally I was able to pee for them. We had a mini celebration about that. Oh….. and I’m not pregnant. Smh.

3ish- Cold. Scary. O.R. room. Laid down on my back with tons of warm blankets. Oxygen in my nose. All these wires and leads on me. Big scary equipment all around. I keep wondering what they are going to use on me and what they will do to me! I was shaking so bad and I couldn’t stop. Talked with the doctor who is going to put a hose up my butt. He explained what was going to happen, you know... how he was going to put a hose up my butt. And we talked about my history with my dad dying of colon cancer at age 39. (Ah! All the emotional trauma is welling up inside me!) Chrohns disease on my mom’s side. The nurse came to me as I started getting teary eyed. I told her I was just so nervous and scared and that all of this was so intimidating. She said I should feel the drugs kick in soon.

Then I woke up! And my husband was right beside me. I was completely relaxed and warm. The shakes were completely gone, it was like I was floating on a cloud. Aaahhhhhh……
The doc came in and gave us the good news of no Chrohn’s or polyps or cancer. And everything looked really healthy! I heard the words, "pink." So relieved!!! I wasn’t forced to fart (apparently that's due to a recent change in what they give you during the procedure), so the nurse unhooked everything and I was wheeled out because my body was not quite in my control yet from the sedation.

4:50pm I stepped into my home and sighed a relief that I am healthy down/in there and I did it and it’s done!! It’s done!!! Thank you Lord!!

4:45pm Stuffing my face with leftover Easter dinner!!! And it was good! And still feeling pretty relaxed and great! My butt's not even sore! It's like they didn't do a thing!

.... or did they?

Update on Elora, the therapy puppy.

An update on my sweet therapy puppy: 

Miss Ambie from Iowa Veterinarian Specialties loving on my puppy. 

I can’t thank the hospital staff enough for their care for her while she was there. She loved them, and they seemed to love her! It made this whole transition so much better to know that she was loved on. I hated leaving her with strangers, but after seeing the love they were giving her, made this “momma” happy. They gave me instructions for her exercises and meds and I nervously took my baby home, hoping that I could pull this off. My health is always so unpredictable, so my prayer was that she would heal quickly and that I would stay in this upswing so I could take care of her properly. God answered my prayers. 

Elora is doing so well. Her energy has fully returned. She can’t wait to be fully free from her cone of shame (neither can I). Her incision is healing beautifully and she’s due to get the stitches removed this weekend! She still hates certain stretches, but she’s getting used to some of them, which is good. She’s been walking slowly on her foot, putting pressure on it. She’s still very weak on that side, but I’m confident that with the exercises, she’ll be strong again. She’s definitely got the determined spirit! And it encourages me all the more as I continue to work with her, but also for myself that I can heal. Her little furry spirit doesn’t know discouragement or hopelessness. I believe God made them this way. And so I let her teach me to keep going, and keep fighting and doing what I need to do in order to get as better as I can. Her and I both may never get to 100% but we are allowed to get as close as we can. But it’s up to us to get there.

sleepy Elora. She insisted on my hand being close to her face. 

Healing stitches. 

gravity yoga with my martini cup puppy. 

Elora, The Therapy Puppy

 If you follow me on facebook, you know that my puppy broke her hip. If you don't, now you know my puppy broke her hip. I have not officially introduced my puppy to my actual blog, so I will do so now.

We had decided 6 months ago that I needed a therapy dog. Being chronically ill and having chronic pain can be very isolating. I also deal with depression, anxiety and PTSD that I takes meds and am in therapy for. Having a therapy dog brings joy to those that are hurting, no matter the hurt. So it's been on our radar to keep our eyes open for a dog once we settled in our new house this last spring.

My sister's dog had puppies. Thee cutest puppies you've ever seen. She spotted one especially that she wanted our family to have. She was near and dear to my sister, but also very sweet. At first, I was hesitant because everyone knows puppies are work! But I do have 5 kids at home to help out when I can't do it, so I tested them with the job of helping me potty train my 2 and 4 year old and well.... by the time the puppy was 8 weeks and ready for a home, she came home to us and now I don't have to buy nearly as many diapers! woohoo!

Elora Dannon (Wing)

We named our puppy Elora Dannon (Wing). (for all the cool folks, that names from Willow. It's so fun to call out, "Elora.... Elora Dannon!" and have this sweet little puppy come running to you) She had so much energy, we thought she'd favor the kids. Not so! She's so attached to me. She goes where ever I go, unless there's paper products on the floor to get to, of course. I'm in pain in some kind of way every day, so to have her next to me, or on me cuddling close, or curled around my head at night, I've been brought so much joy by her presence. Her and I have bonded quicker than I thought was possible and she has been a great therapy puppy.

Well. Yesterday afternoon, my 2 year Ruth (-less Honey Badger), was carrying her around and fell. Ruth is fine, but Elora was not. I knew something was terribly wrong with the way she wouldn't stop crying and then limping off a particular leg. We took her into the Pet ER and xrays showed that her hip has a clean break! My heart sunk and I started bawling even more. (I had of course, been crying on and off this whole time) He said that if we didn't have the surgery, she would have life-long severe chronic pain, with the possibility of losing her leg eventually. He said, with surgery, she wouldn't be 100% but she would be almost that, learn to walk on her leg again and live a long happy life. I remember hearing the words, "She won't ever be 100% but she will be close" and thinking... 'What two peas in a pod her and I are now. Both unable to achieve 100% but can get as close as we can.'

This is her right hind hip that has a clean break. 

How much for the surgery? $2000! I heard the words surgery and knew it was gonna be bad. We are a one income family, so you can imagine the impossibility for us to have that kind of money, let alone spend it on a pet. But Elora was so special and she is such a perfect little therapy dog for me, my husband right away declared, "We are not giving up on her!" I was so happy to hear those words, but how were we gonna do it? The sweet receptionists at the pet hospital encouraged us to start a "Go Fund Me" page for her surgery. With all the more serious things I've gone through in life, I felt so silly doing a "go fund me" page for a puppy. My heart was so torn and I couldn't stop crying, even in front of the doctor and receptionist. The receptionist said, "You gotta swallow your pride and try." So we went home with pain meds to keep her comfortable, to give us a couple days to come up with the money and started a "Go Fund Me" page. In less than 24 hours, we are just a couple hundred dollars away from meeting that goal to afford her surgery. All these people came together for Elora and for me and my family, to be able to give her a good life, and allow me to keep my therapy dog.

I can't even begin to explain how humbled and grateful I am that so many care enough to help and that with many people doing just a little bit (some of you a lot!), it makes the greatest impact. I am overwhelmed.

Although I am so glad to be able to get this surgery done for her, I am still broken about how much pain she has and that this happened at all. My heart hurts for her. We are able to keep her comfortable in the mean time, but it just rips at my heart. It has taken a big toll on me emotionally, which effects my CFS/fibro. Her spirit, though, has lifted me still even with her own broken hip. She still wags her tail when she sees someone she wants attention from. She still gives kisses to everyone, even the Ruth-less Honey Badger who got her into this mess. She still rolls over on her belly to have it rubbed. Her spirit has been motivating and inspiring to me, to say the least. It's amazing what these therapy dogs do for people in need of them. They are so noble and loyal. If you suffer with any form of sickness or pain, especially mental illnesses too, consider a therapy dog. They are so healing in so many ways.

Now I commence cute pictures of her below! Enjoy! And Thank you again, for those that have contributed to our fund for her surgery. Tears in my eyes, thank you so much!

(if you wish to help us with the last bit of our goal go to our page here and donate!)

Yoga with Elora. 

My 6 year old has a favored calm spirit. 

Every night and morning. At my head. 

Ruth-less Honey Badger with Elora. They do love each other. 

I wake up every morning with her next to my head. Every. Morning. Love it.

Bad morning. Loving puppy cuddles. 

She lets us cradle her often. Such a baby. :) 

follows me everywhere. 

Me, passed out on the couch with a mother migraine. Her passed out next to me. 

More migraines, the cuddles never stop. Seriously love her. 

Depression: I stopped making my bed...

I stopped making my bed...



Depression.

An old friend. Sometimes she visits when I expect her to. A situation may call for her and she’ll be there, faithfully by my side. And I’m okay that.

Then there’s the times when I’m feeling okay for the most part. Everything is as well as to be expected. I’m not having a horrible day, but then I can’t quite peg why it’s not necessarily a good day either. I call it a funk. But it’s her. She’s there. Depression.

I can’t answer why. She’s just there. Doesn’t even knock to come in. She just walks through the door. Most times, I don’t even hear her come in. She’s pretty sly.

But when she does come, she’s the only company I can handle. There’s the lucky lucky few that can dwell in my bubble when she’s with me. The words that go through my mind when she’s around are:

Small. Burden. Unworthy. Unloved. Despair. Alone. Out of Control. Ghost. Unable. Cold. Numb. Self-directed anger. Anxiety. Conspiracies. Forgotten. 

The other night I went to bed fully aware I was depressed. Then in my despair, I noticed my blankets. I then realized it had been so many days since I stopped making my bed. It snuck up on me. I know it doesn’t seem like a big deal. For the most part it IS truly a small thing. But what it translated to me was that little red flag that she was stepping over that threshold from my mind (something I can't control) to my heart (something I'm able to control better). A while ago, I started making my bed. It became a goal, that thing in the morning I could do. No matter my pain or fatigue, I could make my bed. It gave me that little piece of my humanity back; to get me through the day. So when I went back to bed completely drained and in pain, fatigued or feeling horrible and defeated (no matter the time of day), my bed was still made. I had done that with my own hands. “Kailan was here,” it whispers to me. And it comforts me.

So when I realized my bed had been neglected, I resolved to make sure that I make my bed in the morning. And I did. I took that piece back.

It doesn’t make the depression go away. She’s much too stubborn, I can't stop her from coming. But she understands she is not wanted. 

And that’s where I want her.

"I have no promise of tomorrow."

Matthew 6:34  "Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own."

Proverbs 27:1 "Do not boast about tomorrow, for you do not know what a day may bring."

"I have no promise of tomorrow."

I say that all the time these days. Usually when I say it, I mean: "I'm feeling ok right now, and I may wake up tomorrow feeling debilitated. So if we are going to do this, we need to do it today." 

Of course this mentality only gets me so far when I must force myself to pace because I can only go so far and use so much energy. But God knows I try to do many things I shouldn't. I pay for it in the end, but I pay for it regardless. I boom and bust (good days and bad days) no matter my tactics for trying to ease off the extremes. Trying to create a balance that's more like the Lady Bug kiddie roller coaster, and UN-like the Dragon. But I'm kinda stuck on that Dragon right now. 

Those verses at the top have been a natural presence that drives my decisions about my life these days. I used to not have to think about these verses. I knew of them, and always thought they were nice verses, but now? Now, whether or not I'm going to embrace this moment of health with my children and husband or friends and family, or go out and get [this] done hangs on the balance of this very rationale. "I have no promise of tomorrow." "I don't know what tomorrow is going to be like."

It's amazing how different I see things; now that I'm ill. I watched a documentary that's on Netflix called Beautiful Broken Mind.  Lotje Sodderland, talking about her experience after having a stroke, said that she now has all this pain and frustration with having to relearn certain things she could do easily before, but then she explains that she experiences a whole other side to the world that she couldn't even hardly explain how beautiful it was. 

When I was listening to her speak about it, even though our stories are very different, I could relate to what she was explaining. 

That paradox. 

It sucks that I'm in pain most of the time. It sucks that so many of my days are spent on the couch or in bed because I can't do anything else. The quantity of mommy time and wife/husband time is diminished. I have lost friends, even though they mean well, I'm just a hard friend to have around right now. It sucks that I don't have any promise of tomorrow. 

But...

It's beautiful that I am forced to live in today. Most of the time, I can't even see past today because I can't process it. And that's ok with me. I'm sure it drives everyone around me crazy (Ha). And when I am "here" and have my good days, they are my GREAT days with my kids and husband (who get the best of me) and friends and family. I feel a high from being well enough to do things like walk through a store or do some housework or get behind the wheel of our minivan!! (that's a rare moment for sure!)

It's a very euphoric feeling. Feeling human. But enjoying being human

IN THIS DAY. 

I wish I could explain it better, 

but I can't. 

Update on Me: Chronic Illness Awareness (while we are at it!)

It has been beyond challenging to write lately. The fog that these illnesses leave me in is debilitating most times, no matter how much or little pain I'm in. But I've promised myself that I would keep writing or at least keep trying. So here I am.

The diagnoses keep coming and so do the pills. I take so many pills, that are both prescription and supplements, I never would've thought this would be me. The picture is just my morning doses.

Good news is I'm responding well to certain meds that help stabilize me enough to keep me out of danger. The bad news, I'm still very "sick." I still have my good days and bad days and very bad days. I will have bouts of days (sometimes a couple weeks) of good days that bring me under the delusion that I'm better. But then I flare again, and it's a reality check of how sick I still am. My good days consist of low pain, low-moderate fatigue, and 20%+ brain fog. My bad days consist of (having at least a few or all of these): high pain, migraines, chest pain, burning arms and/or legs, stiffness, back/neck pain, feet pain, ankle (from my past sprains) pain, ringing ears (6 months going strong), nausea, loss of appetite, dizziness/vertigo, major sensitivity to light and sound, and lots more brain fog.

The depression and anxiety that comes with chronic illness is just as debilitating sometimes. Being stuck in constant pain, fatigue, and fog can leave you feeling very alone and frightened. Watching everyone else doing things around you while you sit, makes you feel like a burden. The never ending question of, "Will this ever lift?" ransacks your thoughts like a dog gnawing at it's bone. It's depressing. Then comes the anxiety of being in situations that bring you more pain, and/or embarrassments and the judgments that come. Sometimes, it's pretty obvious I'm in pain. You can see it in my swollen pale face. But most times, my challenges are invisible to the world. I've been forced to give up so much. So many of my outlets for release have been taken from me, most the time.

I finally gave in to seeing a therapist. I was noticing that not only did my body flare because of the weather, or I overdid it, or I ate something, or it's my time of the month, or my body just felt like doing whatever the hell it wanted to and that day it decided to set my arms on fire..... Sometimes, my emotional instability will cause a flare. When I was making that separation, I realized that not only do I need to work on my body physically, but emotionally/mentally as well. The way I cope with stress is so unhealthy due to my tears and shutdowns ultimately leading to my body shutting down with pain and fatigue. So.... to the therapist I go!

Me with Merlin (my newly named icepack). 

I've also been doing a good job at failing at my new diet plan. The struggle is real! Especially when you are ill and all your comfort foods are "no no's."

So this is just a small glimpse into life with chronic illness. There are so many different kinds of chronic illnesses out there and I do count my blessings when it comes to things I can still do, that others can't.

If you are suffering with chronic illness, I am so deeply sorry. Know that you are not alone and find support groups whether in person, or there's some great ones online. Keep pushing doctors to find out your diagnosis and proper treatments. And love yourself enough to rest as you are able.

If you know someone who is suffering with chronic illness, believe them. Learn about their diagnosis' (the most romantic thing you could do) and how you can help them practically. Buy them fuzzy pajamas, slippers and socks, heating pads, ice packs, movies and don't forget the sweets! (that is, according to their diet restrictions) Give their caretakers a break. Love on them by appreciating that every day they live out their awful disease. Your support means everything to us.