The Crash

I’m writing this in bed with the AC running even though it’s 75 outside. Its been a few days since I’ve showered, the laundry is in various piles on the floor and dishes piled high in the sink. My pantry shelf just gave in spilling all of our canned goods in the kitchen floor but am in too much pain to pick them up, scared that if I get in the floor I’ll have to stay there until Steven gets home. Sonic hasn’t been to the dog park in a few days because I’m too dizzy to drive. My increasingly swollen lymph nodes hint that my EBV has reactivated and intensifying symptoms have made it clear that I’ve crashed.I’ve been able to sit quietly and think and reflect on the past week or so. I am so so thankful I got to go and have a “normal” vacation. I completely wore my body out and pushed it to the limits though. I knew the crash was coming. Dr. S warned me and we took some precautions, even double up on antiviral supplements, but this seems to be what my life will be like now….. A roller coaster of ups and downs.ME/CFS is commonly known for the presence of Post Exertional Malaise, fibromyalgia patients have various terms for it including the push-crash cycle, flares and more. Basically, you are in this never-ending cycle of feeling good, overdoing it and crashing. PEM causes extreme exhaustion and can bring about symptoms that are more intense than “normal” leaving some bedridden for days. The activity level ranges from person to person, for some it could cause problems after an intense workout, others a big trip, or even the smallest of things like a walk to the mailbox, or a shower.The interesting thing for me is that I would do it again in a heartbeat. The past year I didn’t do much for fear of the crash, too long at the dog park would take me out so getting on a plane would for sure cause serious damage. While I feel like the roadkill squirrel my dad pretended to cook, seeing my family was worth it! Watching my little brother marry the love of his life and getting to reconnect with my sister brought me so much Joy!!
I even felt like a normal person for a few days because I took the time to prepare and make necessary adjustments! Here are some things that made my trip easier!Use a mobility aid and/or request assistance at the airport. My walker was a great asset to have when needing to sit down in the long security lines. It’s easy to request assistance at the airport or when you book your flights, the service is free, you just have to ask.Pack essentials in your carry on, or in a bag that’s easy to access. Because of my heat intolerance, I made sure I had cooling products in my carry on and easy to reach when we were on our long road trips. After using them so much on the trip these products have a new permanent home in my purse.
Chilly Towel- these are great! just wet it and go! 
Personal Fan– This saved me on a hot crowded flight, it was so bad I had to ask for a makeshift ice pack. I placed the fan on top of the ice to make it cooler, like a tiny A/C unit in my middle seat!

Young Living Lavaderm Cooling Mist
This stuff works wonders, I mainly used it at night to help with hot flashes but it proved useful in 107 degree heat!
For more information be sure to check out the Essential Oils tab above! My Oil Hub is the best place to find information and get started.What are some of your go-to tips for avoiding the crash or flares with traveling or big occasions?

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.


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.
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 😉

Health is a Crown…..

People kept telling me having the hysterectomy would be the best thing and how much better I’d feel afterwards. I find myself questioning everything now…..
Just to recap I had a hysterectomy in January.
I was recovering okay then about two weeks after the MONO hit. It took some time to sort things out and get diagnosed. Thanks to me joking with steven and my dr’s “might as well” attitude we were all slightly relieved to have mono diagnosis.
I had some lidocaine shots for my nerve pain from the surgery- basically, I’m a big girl and a lot of “pulling and tugging” had to be done resulting in some lasting pain. Was set up to see a pain specialist but the appointment was cancelled due to the mono and will be rescheduled when we figure out what’s happening.
A few weeks later I started passing out during a “migraine”. Then came the numbness and tingling, more fatigue, blurry vision, arms face and legs felt like pins and needles. My blood pressure had been high and out of control since surgery. Good news is it wasn’t stroke or heart-related.
Since January I have seen multiple ER doctors, gynos, internal medicine, had infectious disease drs looking at my charts, neurologists and what feels like every test in the book- except the one MRI I actually need. Due to my anxiety we have had three failed attempts. Weight limits have prevented us from getting one with sedation sooner- even after stating we could go anywhere in the state.
So now we wait until May 2nd
Meanwhile everything is just getting worse.
I can’t drive, can’t work, some days can hardly take care of myself. Showers are torture, walking to the elevator feels like I’m climbing a mountain. I can’t even begin to mention the depression and emotional side of things.
My therapist challenged me to make a list of things I could do to make myself happy or feel better without too much pain. My first answer was eating but honestly, if I am hungry it doesn’t bring joy anymore just stomach issues so I said I guess I could blog.
I’ve been trying to write. Trying to function and explain what’s going on without constant complaining. People who are close to me and actually know the extent of what I’m feeling are all out of answers and ideas.
People keep asking how I’m doing. My honest answer is I’m still breathing- I’m still here- I’m attempting to get out of bed every morning- I’m trying! My answers are usually followed by frustration- why can’t they figure out what’s wrong- when will it stop- work work work work work- money money money- exercise and it will get better- maybe it’s this- maybe it’s that- just force yourself out of bed land my favorite maybe it’s just your depression.
It’s not just my depression. My psychiatrist, therapist, and primary Dr are at least all in agreement on that one. (Thank you blood work. Something is physically wrong. They just aren’t sure what.
I have good days and bad days. I can cook and clean and venture out with steven or my mom one day yet can’t move or hold my eyes open the next, some days are just better than others.
So for the time being I’ll just keep on truckin until we figure out what’s wrong and how to fix it. I want Sarah back…..

Unnamed post about losing my baby maker here…..

 think I’ve been pretty stable for so long now I’d forgotten what it felt like to be in my “Pit” with my little black rain cloud. I am an anxious nervous wreck and feel like I have lost all ability to function… and you know what? I’m starting to think that’s okay all things considered.
This weekend was rough. I took a 14 Hour nap Thursday, could hardly function on Friday. I forced myself out of bed on Saturday and then didn’t even get dressed yesterday. I seem to be in a daze. I don’t want to watch TV, cook, clean, read, I pretty much just lay around and try not to think, praying passes the time too. I’ve had to force myself to eat which is so unusual. Then the tears and time it takes to even decide what to have is completely exhausting to the point of just giving up and not eating.
It has been so hot in the apartment I’m about to blow a gasket. My rage against the sweating has really been a welcome distraction. Not really a healthy one- a welcome one though. I’m tempted to ask my mom to put back up the AC- because opening the windows when its 36 outside is doing absolutely nothing for me. I need to get an indoor/outdoor thermometer so I can see if I’m just being crazy or if it really is above 70 in the apartment.
Yesterday I was reminded that I am about to go through a major surgery.  A very personal, life changing one. Its not like my gallbladder – this is my babymaker ( uterus, tubes, cervix all that sounds so official. I’ll be immature and stick with babymaker)
I guess I haven’t been letting myself grieve properly. I’ve been really trying to hold it together. I read an article from HysterSisters  (thank  goodness for this site) and it seemed to put some things into perspective for me so I figured I’d share it here.
It’s Major Surgery
No matter what type of hysterectomy you have, it’s still major surgery. You may have only tiny incisions or no visible incisions at all, but you still had an organ removed. Although hysterectomies are performed so frequently that society has come to think of them as no big deal, let your family know it is major surgery and you need to follow doctor’s orders and take care of yourself. Remember, you only have one chance to heal right!
Recovery Really Does take 6 Weeks
You’re dressed, you’re walking around the block… so you must be all better, right? Not necessarily! Because you are encouraged to walk during recovery and look quite well, your family may not realize you’re not fully recovered. Remind them that recovery cannot be rushed, and until you’re cleared by your doctor, you’ll be relying on their help around the house.
No, I Can’t Vacuum!
Most doctors will advise you of lifting limits (usually no more than 10lbs). Vacuuming falls under this same restriction. The pushing and pulling motion of vacuuming (as well as sweeping and mopping) puts strain on your abdominal region, and, thereby your stitches and healing tissues. Ignore the pet hair on the carpet and leave that vacuum in the closet.
There May be Tears
The trauma of surgery, medications, fatigue, and hormonal fluctuations can lead to weepiness post op. Some women are dealing with a cancer diagnosis, the onset of surgical menopause or the loss of fertility, and this can be overwhelming. The depth of the emotions can take you and your families by surprise. Let your family know there will be tears and you will need hugs, but it will get better soon!
You Need to put Yourself First
As a woman, you are used to being busy and “doing it all.” This is one of the few times in your life when you need to put yourself (emotionally and physically) first. Your family can take care of meals and housekeeping: this is your time to rest. It may be an eye-opener for them, but stand strong and leave that Super Woman cape in the closet. It will be there when you’re recovered!

Two Weeks

I keep making comments about the Baby Maker. I have to, I have to try to laugh. Humor is the only way I can cope at the moment.
I chopped off my hair yesterday in preparation for surgery. I call it the “I’m not gonna be a mom hair cut”. Personally when I say that I smile, it makes me giggle. I can see your faces reading it, uncomfortable- its okay to laugh with me.
I also ordered a Pregnancy pillow with birthday money. I’ve wanted one since I saw the movie the Back -Up Plan so why not. I find it funny and Ironic but everyone on hystersisters says they are perfect for recovery.
I make fun of Subaru commercials I want to cry at now, I mock them because I just can’t cry. Poor Steven, he doesn’t know what to say or do. No one does. Not even me.
I told my mom the other night I don’t feel I can be honest with anyone. It makes people uncomfortable. I’ve been doing surprisingly well, so when I do break down, or cry, or make so “not funny” comments it catches people off guard.
My depression and Anxiety meds are working pretty well, the best they have ever been actually. This is a wonderful thing but I’m still learning how normal people deal with things. I used to just cry. Now I can’t. Not more than 5 mins anyways. Gone are the days of crying myself to sleep and feeling better in the morning. It’s a wonderful feeling to be so stable. I’m so used to my insides and outsides matching when it comes to feelings…. Its just odd. It’s a change- a great one- but still odd.
Deep down I feel like a complete wreck though. I sit at work and count down the hours until I don’t have to smile, to when I can go home and get in my muumuu and pretend I’m much older than I am. I’ve read tons of articles, I know that women all around the world regardless of age, number of kids, marital status or circumstances struggle when faced with the word hysterectomy. Even without all the extra hormones it’s hard.
I keep thinking about Grey’s Anatomy and the part where Christina is screaming for someone to sedate her because she can’t stop crying. This is how I feel on the inside. I think I’ll make Steven watch this episode sometime this weekend. Just to get a better understanding.
I know that people don’t know what to say or how to handle me. I don’t even really know what I need.
I do wish that yall would laugh with me, understand that the humor is the only thing I can do at the moment to keep from completely losing it.
I appreciate all of the kind words about freezing my eggs, foster and adoption. I will be pursuing foster /adoption care eventually. Surrogacy isn’t the right option for me. I’ve thought and prayed about all the options extensively and appreciate all of your thoughts and prayers. Its helped tremendously.
The next two weeks will be a roller-coaster I’m sure.
I appreciate those of you who are staying on the ride with me.