Ketamine Update!

Tomorrow will be two weeks since my 4th Ketamine treatment! 2 more to go!
We still haven’t hit our GoFundMe Goal but am hoping to use Christmas and Birthday money to help cover the costs of the last two treatments. Things were getting so bad we decided to go ahead and start treatment without having the full amount and I’m so so glad we did!
I honestly can’t believe I am still functioning. I’m so thankful this treatment is working.
Steven and my Mom noticed a change almost right away with others to follow! Lately, I can tell the pain is slowing getting worse, but I’m still leaps and bounds from where I was. I’m pretty sure I did more Thanksgiving weekend with Mom and Steven than I had in the 2 past holidays combined. I was really feeling the after-effects of the fatigue so am working hard on retraining my brain to slow down. Just because I’m feeling so good doesn’t mean my body can be superwoman. Halfway through a lap around the dog park without my walker, Steven and I were impressed, so impressed I did it again the next day. I didn’t plan on not having the walker with me but had to take it out of the car for more room at Thanksgiving. Somedays I can’t put my finger on how I’m feeling, but then we have experiences like that which would not be possible before starting infusions. Since starting my Infusions I’ve been able to help a friend online and become a Virtual Assistant, and most importantly take better care of myself & home. For the first time in so long, my mind is daydreaming and planning for the future. I’ve even worn makeup on a few outings!

I just wanted to update y’all on how things are going and thank you again for all your support.

https://www.gofundme.com/help-sarah-with-infusion-thearpy?sharetype=teams&member=1071784&rcid=r01-154420976893-9acc7d9381924f7e&pc=ot_co_campmgmt_w

‘Twas the night before Ketamine

My first ketamine infusion is tomorrow. Seriously,  thank you all for your prayers and donations on the GoFundMe page. We haven’t made our goal but have enough for the first two infusions and since I can’t seem to get out of this flare, depression, and pain wise, we are just trusting The Lord and going for it.


My anxiety is on overdrive. (when did anxiety become buzzword) Last night I made Steven take me for Mexican food so I could eat my feelings, followed by a walk around Hobby Lobby. It sounds silly but I needed to read all the inspirational stuff, to hope for the future, and to get excited about Christmas decorations.  I don’t know what I’m more afraid of…. The infusion therapy working or it not.


I’ve put all my eggs in this one basket so to speak so if it doesn’t work I’m back to square one. When you’re chronically ill you must accept the fact that sometimes you aren’t going to get better. The pain will always be there, the fatigue will always be there. You can try to manage the symptoms but things won’t be the same. I know that these infusions wont cure me, only help my symptoms but if these work it will be the closest thing to “normal” I’ve felt in a few years. So if it doesn’t work I’ll be somewhat devastated since we have exhausted ALL available options for treating my pain.


If these do work it will come with its own set of worries. How long will it last? How can I pace myself? Can I work again? If so doing what? Where? Will it help my depression? Can I stop taking so many meds? I’m currently on 3 antidepressants, a mood stabilizer and an anxiety medicine…….just to try to control my depression.


I remember very vividly telling my mother I wanted to go walk around Walmart following my colonoscopy with the ketamine. We got out of the car and I saw Mt. Rainer in a way I’d never seen before. It sounds crazy but the fog and fuzziness I had been experiencing for 10 + years seemed to be lifted.


I don’t talk about how bad my depression is most of the time. I’ve always been open about it and my anxiety but usually I keep details out. I admitted to Steven, Mom, and my bible study this week that it may be time to look at hospitalization if nothing changes. Something I have fought hard to keep off my medical record because of future adoption stuff.  A couple weeks ago when it first started getting worse, I basically showed up at my best friends house and made her and her family hang out with me. I couldn’t tell her(or anyone) the pain was so unbearable that my meds weren’t’ working. I tried so hard to forget that I was sick that day.


I guess that what I I’m praying so hard that these infusions will allow me to do ….let me forget I’m sick for just a little bit


Allow my body and mind to have some time to breathe. At this point even if it’s just for 24 hours I feel it would be worth it.


Shower and Leave

Leaving the house and showering have become increasingly difficult. I wish I could say if it’s the pain or depression making things so bad but it all seems to be running together lately.


I went to an appointment yesterday, the sun was shining, the rain had stopped and it was cool enough outside I wasn’t drenched in sweat by the time I got home. I really thought getting out would help. It didn’t. Actually seems to have made things worse on the fatigue front. 


Since getting sick, I’ve had a love-hate relationship with the water for sure. Ask anyone, showering is one of the most exhausting things to do when you are chronically ill. Then when you add the pain the water causes its just easier not to shower, unless absolutely necessary. Baths with epsom salt, a fan, ice pack seem to do the most bearable. My hair has been falling out pretty bad lately, it’s either the new antidepressants or the mono wreaking havoc on my body.


Tomorrow I will have to leave the house and go to a work function with Steven. I feel so silly that its Friday night and I’m writing (to calm my anxieties) about showering and leaving the house.  Oh well, here to a Saturday not on the couch no matter how I feel!

Depression

It’s been so long since I’ve blogged. I wish I could blame is all on my illnesses but this hiatus has probably been more from my depression than a flare.

I started some new anti-viral therapy to help with my EBV & CMV. Let me tell you, it’s been rough! As rough as it’s been I think it’s working, some days I think I can feel my body battling.

That being said I think it’s messing with my depression medication. Because of insurance stuff and how hard it is to jump through behavioral health hoops it took me longer than expected to see a new psychiatrist. (mine retired)

As easy as it is for me to talk openly about my healthy stuff, hysterectomy, and life, my depression is one of the harder topics!

My hope is to keep blogging about my experiences with the antivirals. I also have a cool new medication app I’m trying that some of y’all may benefit from!

A few months ago I got the bright idea to change up my blog and focus it more on helping those with Chronic Illness like me. I’ve done hours of research, training videos and blogging courses. I want so badly to be a influential writer, especially to those hurting like me. To be honest I also hope that one day I can monetize my blog to help off set the income lost by me being sick. Yesterday I wrote a post that was only 75% me though. Writing about my experiences with crashing was easy- trying to transition to selling items with amazon links was not.I took a course on instagram branding last night. I got so overwhelmed I shut my computer and went to bed defeated. I feel so lost in that word, I’ve always been the creative type but never had the ability to execute! So please bare with me as I fumble through social media and writing courses in hopes to better my hobby!

Will’s Wedding and Vacation

As many of you know Steven and I recently went on vacation!!! Flew to Austin, drove through Waco, picked up Beverly in Dallas, drove to Kansas, did wedding stuff, drove to Papa’s, surprised Abby,  took a trip to the Beach, hung out with Grandma, flew home, picked up Sonic, then ended with Steven’s Uncle Rons wedding!

Here are some highlights from the trip!

My love feels like home

Ive been watching way too many Hallmark and Lifetime movies this holiday season. Its made me reflect on my own love story.
I could tell you all about the online dating, the nerves, me walking to a Red Robin because my car broke down and my phone was dead. Our first kiss on my birthday and the heartbreaking news that not only did I lose my passport; it was expired leaving me to spend Christmas alone. How Steven invited me to spend Christmas with his family, and ended up at the beach. It was Christmas Day, standing on a sand dune looking out at the water that, I realized I loved him. He felt like home. Its been two years since that time and he still feels like home.
Instead Ill tell you a different part of our love story; The part that isnt all merry and bright like a Christmas movie.
Last year the holidays were full of excitement about seeing both sides of my family and getting to introduce them to the man that makes me smile. The nerves and heartbreak of my upcoming hysterectomy were somewhat masked by the excitement of it all. Unfortunately my mind is kind of a jerk and doesnt always listen to my heart. It was full of anxiety and the fear that he would leave once the surgery was done. I felt as if I wasnt going to be woman enough anymore. He didnt leave.
It was after surgery that threw us both for a loop (actually its been more like a crazy roller coaster coming off the tracks). I never got better. We were introduced to the world of Chronic Illness. He held my hand and fought for me while searching for answers. Being undiagnosed for so many months was awful. As it became clearer that my chronic pain wasnt leaving anytime soon, I once again let my mind worry about him not loving me anymore.
I could not have been more wrong. He has held my hand through what seems like hundreds of blood tests and sat hours in waiting rooms. Supporting me while I try dozens of new medications and having to suffer the side effects right along with me. Never complaining about the times I cant get out of bed to make him dinner or having to make sure we have clean clothes. He takes care of me days when I cant care for myself. He has washed and brushed my hair, pulled me out of the bathtub, and some days changed my clothes. He sits in the floor with me while I cry and scream about wanting to feel normal again.
Recently my health insurance switched and suddenly everything health wise was no longer being blamed on “Just fibromyalgia and mono.” We have been thrown back onto the roller coaster and its even scarier this time around.
This Holiday season my heart and mind know that it will be okay, because he is by my side and loves me despite the person Ive become since getting sick.
I doubt our story will ever be made into a Hallmark movie and thats okay. I feel I have a different type of Love, one  that heals, and comforts, and feels like home.

The Hope a new Dr gives

Tomorrow I see a new Doctor. With all the insurance changes and having to get Medicaid I can no longer see Dr. P, my favorite and primary care for most of this crazy journey, or my psychiatrist who finally got the correct combo of meds!!
I have read enough articles, blogs and Chronic Illness facebook posts to know not to get my hopes up but here I am 24hrs away from an appointment, getting excited. TOMORROW’S THE DAY WE GET AN ANSWER AND FIX ME!!It’s this feeling I’ve had many times before. Before the neurologist, MRIs, every blood test, rheumatologist appointments, gastroenterologist and every other “ist” I have seen. Maybe someone will have an idea on how to help me or find answers in a new test.
Chronic illness are different than most, you never want tests to show anything bad but at the same time you want something to show up so maybe the medical community can fix it.
Though I have the diagnosis of Fibromyalgia, along with some other things, it doesn’t mean I’m well or that we actually know exactly what is wrong. I’m still having the same problems and the longer it goes on the more frustrated I get. I still have a plethora of symptoms that can’t be explained by just fibro, some of which are quite scary. Just this week I passed out, fell off the toilet and broke my glasses beyond repair. This isn’t something that exercise and mindfulness can fix. It’s not something I just work through or can blame on my depression.
Something in my body is off, I can feel it.
So here I am being hopeful and praying the Dr says something new or different tomorrow. I know deep down that I’m at the beginning of the marathon that is my new life and no person or miracle medicine can’t fix me…… yet.
I still want to believe that I, like so many others in the chronic illness community, are not forgotten or left to accept a diagnosis without treatment options. We all deserve to have hope in the medical community around us.
So off I go with my medical records, a 2 page list of medications I’m on, and a hopeful attitude.

Disability

I’ve been debating on if I should share this or not but considering I’m awake at 3AM I figured I could use extra prayer.
I have my disability interview tomorrow which is the first step in a very long process that I honestly don’t even want to go through. I never thought going in for surgery that I just wouldn’t recover. It’s been 7 months of battling. I don’t want to be on disability. I want to go back to work, I want to stay awake all day, and function like a normal person, I want to able to function every day without pain.
I recently went to a friend’s wedding, it was the first time I had traveled very far from home, gotten dressed up and was excited about something in a long time. Facebook told y’all that I was doing better, looking better, and sounding better. Reality was different, you didn’t see that I didn’t drive very long, hurt the whole way, needed to nap and rest in the car, or that during the reception the most comfortable place for me was on the ground. I’m sure people were like what in the world is she doing. Facebook doesn’t know how many days I stayed in bed or couldn’t function afterword’s, or how many showers I’ve managed to take in the past few weeks. I’m not saying I didn’t have a blast- it was great to see friends and old co workers and to celebrate a beautiful couple.
Y’all chronic illness is hard, dark and ugly, these days of social media make it harder. I don’t want people to see the part of me that is disabled now so I try and hide it. I only post on good days and try to stay positive . I should be glad if a few of you reading are like wow- she’s fine- not disabled- why on earth is she filing.
I should have filed months ago but was/am concerned about how this would effect foster and adoption in future. These decisions don’t just impact me, they effect Steven, my family, his family, and so on. I already have so much guilt that I can’t give anyone biological children so trusting Google to tell me you can foster while on disability is hard for me.
Trusting God to take care of it is even harder.I’m usually most honest while I blog and keeping with the spirit of that I’ll admit that I’m still at the “Kicking and Screaming” at God phase of this chronic illness battle. I shouldn’t be but I am. When thinking about it, looking at my medical records and discussion with my a few dr’s and therapist I realize that my health started going downhill after having Mono in high school. They tell me I should take comfort in knowing that it wasn’t “just” the hysterectomy or anything I did or could have done to prevent this.
Now here we are- almost 7 months after my surgery and I’m asking for prayer around this. I’m nervous and scared and not too thrilled about what will most likely be a long and drawn out process. Having my interview tomorrow doesn’t mean I’ll get it, and if I do it takes 3-6 months for a decision. This means another few months of hardly getting by and trouble paying bills, my mom and Steven can’t help me much longer.
All that to say Prayers are appreciated.
               Not all Disabilities are visible.

Healthy Haircut

At this point in this never ending health saga I am absolutely desperate for some sort of relief. Somewhere between the pain and fatigue my depression jumps in and makes everything much worse leaving me in what seems to be a chronic cycle of me just trying to function like a normal human.

Yesterday was ME/CFS & Fibromyalgia awareness day, while I have not been officially diagnosed with either of these or anything at this point ( besides mono…) I do take comfort in the community of people I have found online experiencing the same issues as I am. It’s nice to know you are not alone even though my depression tells me otherwise- I am not the only person in the world with random symptoms, the only one who has to nap after a shower, who’s skin feels like fire after the smallest touch, who can’t seem to be hugged anymore without severe pain, who’s blood results are great yet abnormal at the same time. I am not the only one who is desperate for some relief and knowing that brings the comfort that I cherish late at night and into the wee hours of the morning when I’m left alone with the pain and darkness.
Last night was one of the worsts I’ve had in a long time. I feel like it was trying new medications plus the disappointment of having no answers from the rheumatologist, mixed with a little bit of Mother’s day is tomorrow and the whole childless hysterectomy thing.
So I cut my hair.
I’ve been thinking about for a bit. In preparation for explaining and convincing those closest to me that I’m not being compulsive,  I came up with this list.
MY HAIR HURTS
Why not? It will grow back right?
What if it works? How silly would I feel if cutting my hair helped some of my symptoms where my head is concerned?
At this point my double chins don’t matter.
It’s exhausting to wash it hurts so bad to brush it
It is falling out. I’m so tired of seeing it in the shower, in the sink, pillow. I know cutting it won’t help the shedding but at least it won’t be as long right?
I am aware that I’ve always been on the masculine side and do worry about the short hair but desperation wins this battle. I’ll just have to learn makeup and jewelry to pretty things up Or because I rarely leave the house just deal with it. Looking like my dad should be a compliment 😉