Reality Of My Life

Waking up at 4 am with my heart going wild over life is hard (anxiety, stress and this wild heart disease). Why can’t everything be ok?

I never thought I’d still be a sick girl by now.

It’s actually a very, alone battle to be suffering for so long. Not having people understand… me looking “normal.

Every single day I wake up not knowing if it’ll be a “good” day or a sick day. It can change within seconds in my body too.

But I know, I look “normal”.

I went to my high school reunion two nights ago. It was a lot of emotions for me in a lot of ways. I was so sick in high school… that’s when I had meningitis… and I’m still dealing with it.

I’m still struggling that battle.. 10 years later?!

So many said how great I look and that I must be better than what they’ve heard of me online…

It’s crazy, that the day before at the same time I was in the er. My vertigo was crazy. The cyst on my head had increased a bit and my hemotologist was concerns that it had grown more on my brain and that’s what’s been causing all my messed up symptoms for the 2 months.

I was scheduled to get the mri today, but the way I felt had to be done. I had to get the results figured.

I remember laying in the bed just feeling so alone. Rous was with me and I appreciate him so much. But alone to the fact that it’s my whole body…. my whole body has been doing this er thing since I was 12? Why?

Why am I getting multiple mris a year for my brain? Why do my platelets still drop terribly low? Why do I feel so sick and messed up so many days?

But I look great right? I’m not sick anymore right? It could be worse right?

If you felt how I felt you wouldn’t ask me things like that. You wouldn’t assume you know how I’m physically and even mentally feeling.

It’s a battle in both ways.

Right before I was getting my mri, the man running the whole thing kept calling me friend, kept being caring, genuine, sorry I’m doing this (after reading my history he said). He changed how I emotionally felt with it all. He made me feel understood that I’m sick, cared for that I’m sick, ACKNOWLEDGING that my life has been hard and this suffering is very real.

I remember listening to Citizens and Saints as the whole mri noises are blaring in my head and I was crying, I felt so cared for my this random man? Why can’t I feel understood by those I know? Why did a man I just met understand I’m still sick and have been for so long?

My spirit was lifted in the midst of that mri. I felt thankful to God that He allowed me to meet that man. I told him after how much I genuinely appreciate the care that he gave me, the words that he said.

It’s so hard feeling so misunderstood with my health battle.

Just to have a few in my corner understand means so much for my being. Just to acknowledging that this is a struggle and they feel for me, care for me, understand I’m sick… means so much.

I’m still struggling with the severe trauma from the last brain surgery. My drs didn’t think it would be that bad…. it’s made me a different person. Good and hard ways. The Lord will use it and already has in SO many ways… that still makes it hard though.

Laying down on the couch all day is weekly, appointments are weekly, checkups are weekly, dr calls are weekly, er visits are often.

That’s my life. The reality is I’m suffering. The reality is I’m sick. The reality is about 4 people understand (not including Drs, nurses, counselors). Imagine going through so much sicknesses and only saying 4 people get it? It’s hard. It hard to my heaviness of feeling alone with it all.

Please stop asking when I’m having a baby. Please stop saying you’re so happy I’m not sick anymore. Please stop saying at least I’m pretty (makes me sick to my stomach even being reminded of people saying that). Please stop saying it could be worse. Please stop telling me to just smile more.

Please cry with me. Please a-knowledge that I’m still sick. Please feel sadness for each health event I have. Please don’t have your prayer be for kids but for my HEALTH. Please know my faith and trust in God is so much greater from all the sorrow that continues. Please don’t look at me and assume “I’m fine”. Please don’t compare. Please don’t give me advice. Please know it’s a continual battle. Everyday.

Well, it’s now 5:19 am. Maybe today I’ll feel “good”. ❤️

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Real Talk

Most of you who have been following on here have noticed a change. It isn’t just about my health, in fact most of it isn’t even talking about my health struggles. I’d love to keep you updated and let you know what’s really going on, please watch this video I made 🙂

 

 

So since I have been working with brands that’s why you’ll see so many pictures on here. I’ve been reaching out to many, and have been contacted by lots. Hoping to make a small income off of working with them. Pass the word around if you feel up to it!

This cozy sweater is from Closet Revival! Loved going to the beach and enjoying it’s warmth 🙂

 

 

Get 20% off with code: shophannah Go check out Closet Revival!

The link to my fundraising page is here ♥♥

And please share!

 

Seizure Free!

The sad thing is I feel like most of my posts are full of bad news. Bad health updates, how depressed I am, just how hard life is (if not I have severe memory loss haha).

This one, however, will not be like that. The 10th of this month was my 3 month anniversary of being seizure free. Just writing that makes me cry. I truly had no idea what a life was like without so many seizures a day. And the crazy thing is when they were testing me, even when I wasn’t feeling my seizures, there was still soooooo much seizure activity going on. So I always felt so sick for a good reason, so much activity going on there!

Well, Rous and I got back from our trip to the mayo a couple days ago. I’ve had so many people asking how it went, and I’m so bad at explaining things using my mouth now. Part of my brain that they burned off was the ability to think of words, thankfully I’m on a computer now and can take my sweet time, but when I talk to people it is such a struggle for me. So here is the little update….

Every MRI, ct scan, EEG (that’s basically all brain testing) that they did on me, came back completely seizure free. Zero seizure activity! My Drs. were even impressed by that. They thought I’d still be having at least one a week, but nope none. My sweet Neurologist says in about 3 months she will start weening me off my high dose of meds. At first I was a little bummed that it wouldn’t be right away, but I think I can wait 3 more months. She just wants to be extra careful with me and I’m so beyond grateful for the care i’ve received from her. They want me to see a speech therapist so I’ll hopefully be able to relearn how to communicate.

The hard thing is my blindness is still strongly there. Hasn’t exactly improved. Both eyes are now 25 percent blind. I’m slowly getting used to it, but still hoping that it comes back. My short term memory is significantly worse. They told me it would be, but wow they really burned off almost all of it. I feel so bad because I can’t remember anyone. Who they are, what their name is, memories of us. It’s crazy. The funny thing is I have had so many people say, “Hey my memory is just as bad and I didn’t have surgery.” I’m laughing now just writing this because no, no it’s not. Ha people don’t know what it’s like to have that burned off. I know so many people say things like that to try and relate, but it’s just hard to hear so much. I almost didn’t write this, but I thankfully can’t remember anyone who said it, I just know it’s been said to me so much. So I guess that’s a plus with memory loss :)Tee hee. And don’t be upset if you did say it!

This trip to the Mayo was seriously such a huge blessing to both Rous and myself. It was honestly just full of joy and real blessing from the Lord. I got to see a very dear friend, her name is Hope. Of course it is 🙂 I met her last time I was there and we got to talk about brain problems. That woman has suffered so much. She has had soooo many surgeries on her brain. And she even has my heart disease, POTS. I just am so blessed to know someone who truly understands what it likes to suffer in my way. People who have hard health issues definitely get this! This is Hope, and I’m asking you right now to just lift this amazing woman up in prayer. Pray for strength, peace, joy and healing. Prayer is so powerful! ♥IMG_5418

One of the days Rousseaux and I went into Starbucks and sat down at a table. I of course wanted to be in the sun so I had us move to a long table. There was a man sitting at the far end of it working on his laptop. We were there a couple minutes and the man says to me that I should get out of the sun. I told him how much I love being in the sun. A few minutes later we start opening up to each other…Why we were in Arizona, what I just went through. He turns his computer to us and what do you know he was in the process of studying? Focal seizures! My ex seizures! We were all so blown away by it. He is on his last steps of becoming a neurologist! We moved down by him and just started talking about life. It was his birthday, and he’s so far away from his family. He felt so blessed by us. And we thought it was so special to meet him. One of the sweetest most genuine, Jesus loving men we’ve met. We knew that was the Lord. We had breakfast with him the next morning and he drove us around showing us neat things there.His name is Giorgio. Which was even funnier to us because Rousseaux and I have a nickname for each other called Georgieaux, pronounced the same.

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The rest of the trip was talks of the future. What will life be like now without this? Do I have my blood disease? Yes. But I have had no serious bleeding in months! Do I have my heart disease? Yes. But I’m slowly trying to get used to it by ignoring and not fearing the symptoms that I get. We want to travel. I want to go to Australia! I first knew I was in love with Rous when he was living there and I was here, it’s so special to us. I have my first job that I love so much. I wanted to stop after my first day because I had never done so much or anything like that. My amazing boss said that I could, I could go home and get back on the couch all day. Or I could step out and try this. Wow, that blew my mind and encouraged me to keep going, and i’m so thankful that I have.

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Here is my beautiful Neurologist!

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A little post I did after seeing my surgeon:

Today I got to see my amazing surgeon, of course I started crying when I saw him. The Lord used him to totally take away my seizures! He said he was so so happy for me, and how sad he was of how sick and depressed I got after surgery. He kept reiterating how excited he was for my recovery and how different my life is going to be, starting at 25 being new. And how thankful he is to be able to do what he does to help me. Thank you sweet Dr. Zimmerman

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It’s been on my heart for awhile now, and just recently I really felt called to write a little book about my struggles, battles, hardships, and joy that I’m able to have through it all. Since going through such hard things since a young age, my prayer has always been that the Lord will use me to be a light and example to others who are battling such hardships. Now that I’m starting a new season of my life I feel it is time to start on this book. The crazy thing is I was at work, and my old Pastor Peter-John came in. I was just thinking about contacting him the day before because he wrote a book, and his testimony of what he’s been through touched me so much. I told him that I was thinking about it and he said he didn’t think he was suppose to be in the store to buy something, but to tell me that I absolutely am suppose to write a book! So well, that’s confirmation for me alright! If you have any wisdom, knowledge advice please please contact me.

My friend Amy, has started a fundraiser for me. As most of you know brain surgery, drs appointments, massive amounts of testing and traveling back and forth can be expensive. If you feel led to give even a tiny bit it would bless us so much. We fully know the Lord will provide and that thankfully gives us peace. Click here for the link 🙂

As most of you know I’ve wanted to meet Ellen and give her a hug. Thanking her for all the laughter she’s brought me through so many days of sorrow. I have not heard from her yet, but we made another video to hopefully get in contact with her…

Here is our new video, I can now sing from surgery!!

2 Month Celebration

It was 9 years of having multiple seizures a day, 2 years of having over 20 a day. They would wear me out so badly. I couldn’t talk when I was having one, I couldn’t tell whoever I was with that I was. I couldn’t even think of the word seizure after I was done having one. I was so beyond fatigued after one, my whole body just felt so sick. I could barely talk for quite awhile after. I couldn’t eat after. I didn’t even remember what life was like to not have multiple seizures a day.

Today is the 2 month celebration of not one seizure since my surgery. I’m crying out of joy as I write this. I had no clue what it was like to live a seizure free life. Wow, it is so beyond different. I honestly feel like a new person! My heart and head feel so much kinder towards…life! I have a joy that I don’t ever remember having. My desires to do so many things are slowly becoming realities and I just feel so blessed, so thankful, so happy.

The first month or  I regretted it badly. Even though I wasn’t having seizures it made me  beyond sick. And I was  out of it, and so scared that that’s what my life would be like. They didn’t warn me about any side effects, but boy did I have them! Now all that I really have is the blindness on the right side of both my eyes, which I’m slowly getting used to. And the ability to not think of words as I’m talking, ha which I’m not used to at all. I’ve lost so so much memory, but really I’m completely ok with that. I can’t remember names, or a lot of memories. But I’ve learned to write things down quickly!

I’ve desired for such a long time to be able to bless people in a big way. And although you might not think this is big, it sure makes people happy. I no longer charge for my photography. I want to be able to give people full sessions and edits with no cost! I’ve already started and it’s just made me so happy! I’m doing a wedding next month! My desire is to really be set up with a nicer camera and lens so I can bless people in a bigger way. This Saturday I’m having a little shop in my backyard of beautiful clothes and house decorations, to try and raise money for this project I’m working on. Ugh I’m just so excited!

Early June, Rous and I head off to the Mayo Clinic for a couple days for lots of testing and Drs appointments. I’m very curious of what a machine will actually catch in my brain. Is all the seizure activity really gone? There’s been moments where I feel like I might have one, but I don’t. I wonder if that’s actual seizure activity or just my body so dang used to it that I feel that. We shall see!

I have 1 sickness down, and two to go! One of the cures for POTS (heart disease) is working out. I haven’t been able to because of how sick I was. But for the past 3 weeks I’ve been working out pretty hard, so desperate for my heart to function normal, so I feel normal. It’s been just all around amazing for my health and mind ♥

Thank you to all the people who gave us food for a whole month after the surgery, wow was that needed and such a blessing. I don’t really remember most, but just know that I’m thankful. Thank you to the 100s of people praying for me, for all the kind words, sweet notes, loving hugs. So much love to you all ♥

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Photo by my dear friend Rachel Haylie. Go check her out at Rachelhaylie.com

Hosanna

I’ll start off with a huge thank you to everyone who has been supporting us, and I mean all the food, love, finances, hugs, words, encouragement and mostly prayer to my Savior.

Has I’m writing this, and thinking about how this past month has been I’m already crying. Saying it’s been hard doesn’t seem to fit. It broke me in every way imaginable. My heart is happy to say that things are getting so much better. It’s still “hard”, but way beyond better then even a week ago.

Rous, thankfully got to explain everything with the surgery, and it was beautiful and true. Besides all the pain, that is really gone away for the most part, so so much was and is there that they didn’t even mention. I’m blind in both eyes on the upper left part, which is so hard to get used to. One Dr. said it will always be there, another said it should go away with swelling, but they also said my swelling should already be gone. I’m really hoping that it goes away.

The part of my brain that is swollen effects when you get angry and anxiety. And I’m just so sad to say that those have been severely effected. More so the anxiety. And I’m sure that’s just mixing with my heart disease, but wow, it has been so bad. I just never struggled with it and now it’s all over the place. My heart just feels so broken over everything. It used to be that I had experienced more life without sickness and now it’s changed, since my birthday, to more sickness then a healthy  life. To me that is just beyond crazy!

A couple hours ago I had to get out of the house and clear my mind. So I went for a long long drive in the country with praise music on. Just absolutely sobbing from everything that’s happened since the surgery and everything that’s been happening for these 13 years. My heart just feels so sad about it all. I had worship music on and I just turned it up and asked the Lord to give me a song that I need to really understand right now and to speak to me through it, and Hosanna came on. Hosanna means; an expression of adoration, praise, or joy. Over and over again I was singing (and crying), Hosanna.

Heal my heart and make it clean
Open up my eyes to the things unseen
Show me how to love like you have loved me

Break my heart for what breaks yours
Everything I am for Your kingdom’s cause
As I walk from earth into eternity

This spoke to me in more ways then I could say.

When I was on the drive I got a text from my brother, Bleu, but didn’t want to read it (AND YOU GUYS SHOULDN’T TEXT AND DRIVE, SO DANGEROUS). When I got home I opened it up and this is what it said, “Here’s a fun fact for you: did you know that when your parents conceived you,  that there were 100 million other members all floating around, and you, yes you were chosen by God of all those other 100 million other children to have life? Pretty amazing! Huh? And if you go back and times that by just our grandparent and great grandparents, then that’s 6 different couples so that’s 600 million! And just the chances of them meeting when they did and having kids…That’s a miracle. You were put here, specially designed and given life for a special reason and purpose. Truly He can say you are fearfully and wonderfully made.” Whoa. I don’t know if i had ever felt the Lord speaking to me so much. I needed to hear that more then I could ever explain! There really is a reason for me in this life.

The one thing I’ve been doing to help my anxiety (when i’m up for it) is gardening! It has become my favorite thing to do. I absolutely adore making the outside of our house look beautiful. If anyone has any tips or any plants they’re giving away let me know ♥

I thankfully can say that I have not had one seizure since surgery. They said it would probably take months to years to be like this, and I would still at least have one once a week so I am pretty blown away by this. I was having 5-20 a day! Now once my brain isn’t swollen and I’m not having this anxiety/depression/anger I’ll be able to enjoy it like a normal person would! Hey, I might never be normal, and it’s ok to be different. My greatest desire in this life is to be a light in this world. I truly pray through everything I’ve gone through and am going through that I can. Lord bless you all who have been so supportive and loving to me, truly thank you. ♥

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March 12th

Well, as i’m writing this I’m sitting outside a coffee shop in the SUNSHINE drinking my new favorite drink, a chai with hemp milk. Umm seriously so good. I feel so blessed to be here in this moment. It’s times like these that make me so grateful for life.
The past couple weeks have been such a roller coaster for me. I feel so happy that it is up and down and hasn’t just been down. I was getting an infusion once a week, but last Thursday when I was suppose to get it I refused (that’s what they like to call it). I was sitting there for 5 hours getting medicine pumped into me that made me feel so sick and killed my immune system. Already not my favorite thing, but then the last time I had it on my way home I look down at my port and it’s gushing blood. Which means my platelets are out of control low, still…even after sitting there for 5 hours. I am seriously not ok with that. If i’m going to get something that makes me feel terrible and is costing my insurance thousands of dollars I at least want it to keep me from out of control bleeding for a couple hours after. When I refused it this last time a nurse came out to the waiting room to publicly announce that I was refusing their recommendations and was at danger of sever bleeding and death. Ha kinda awkward for me with 20 other people listening and looking shocked. I’m happy to say that there’s been no crazy bleeding and I’ve felt kinda good! Actually I’m thrilled to say that!
Rous and I went up to Portland last week to see a specialist, that I’ve actually seen at least 3 times over this 11 years. He’s one of the most interesting and intriguing men I’ve ever met. Which I don’t know how I feel about those qualities in a Dr… I was prepared to be sobbing by the end of it, which is a norm for all my appointments. He gave me so much hope though. Every Dr. I’ve ever seen has told me I’ll have this the rest of my life, and that’s a pretty hard thing to hear. He was so positive though! He said 5% of people with this disease, it just goes away a year. 5% isn’t a lot, but that brings me so much needed hope. He also gave me a list of new medications that I could try. Not as stoked on that, but we’ll see. Getting a new drugged pumped into me that will potentially kill off other parts of my body or that i’ll have an allergic reaction to scares me quite a bit. When I say having an allergic reaction, i’m meaning your lungs closing up and not able to breath at all. I’ve had that happen too much, and i’m really scared during those times.
There’s a Dr. in Seattle that i’m probably going to see that tests me for all kinds of things that the Drs I’ve seen have no desire and aren’t trained to do. I’ll be tested for mold which might sound weird, but i’m pretty excited about that. I lived in a little house for awhile that had black mold and I got my disease around the same time even though every Dr has said there’s no correlation. Ive had a hard time believing that. If they could find the reason for all this I would be so thrilled. They do a bunch of other tests: allergies, saliva and a bunch of others I don’t understand. The mold test is free, but the others sadly aren’t. Insurance doesn’t pay because, well they won’t make any money off of it and it could potentially cure me. The Lord has provided for us so much and we feel so blessed and so thankful.
I’ve been eating so healthy, and I really do think that’s the reason for feeling so much better. Thank you to all the people that have helped and been supportive and encouraging to me throughout all this, especially about what i’m putting in my body. I’ve been praying for healing for years, and I know that the Lord has everything all planned out, but I prayed and continued to put things that are harmful into my body. I just don’t believe that’s how it’s suppose to be. Pray with faith. Ask and believe. Trust. If you’re suppose to change something or act on something do it. We’re suppose to be growing and learning. Not just sitting and asking.
Days when the sun’s shining like this my faith and hope seem to grow so much bigger. ♥Image