I have been out of touch lately.
I promised I would blog a few times a week and I intend to keep that promise, but this time was very different from most.
I couldn’t stand to look at a screen for almost the past three months.
We’ve been very busy every weekend since early June.
From father’s day and my dad’s and two nieces’ birthdays to the Fourth and a girls’ night out, it’s literally been one event after the other. And those were the events I made. I missed several others due to my headache/migraine sitch.
Here’s how it all went down:
June 22 – I developed a really bad headache.
June 25 – I went to the ER for a migraine.
July 1 – I go see a specialist about my shoulder and he says the shoulder muscles and neck muscles can cause migraine-like headaches in the back of your head. BINGO. I also got new migraine meds from him and a cortisone shot in the arm. I also saw my oncologist switched around some dosages to my medicine and new medicine to try.
July 4th Weekend – We tried to get the kids out more and let them enjoy the holiday. I still had an achey-ness at the base of my skull and the headache would flare up and then ease up, and it did this over and over again for days. But I was able to withstand a few hours of fireworks for the kids.
July 8-10 – I could barely function. Klay was gone to the Reserves and had to leave me under my mom’s care. She was there every step of the way, but we decided when Klay returned Sunday, he and I were going to the hospital the next morning so they could figure out what’s going on with my head.
July 11 – I get to the hospital and they give me some (I think) steroids, antibiotics, and fluids. I’d thrown up that morning already, so we knew I was pretty nauseated at that point. We were there for several hours and I hadn’t been given anything for pain yet. By the time they came by to let me go home, my head was throbbing and pulsating like it has been these past four weeks and I couldn’t stand it any more. They weren’t able to get me an MRI of my brain because my insurance takes about three days or so to fax back their approval. Anyway, I told them exactly how much pain I have been in and that they needed to admit me in the hospital because I couldn’t go home in so much pain for two more days waiting for an MRI to go through. So, I was admitted and finally received some pain medication.
July 12 – MRI scan comes back negative for any sinus problems. They said I had mild blockage but they don’t do anything for mild sinus issues. I was supposed to get a spinal tap too to make sure that the leukemia had not returned in my spinal fluid and to really ensure that because of the headaches I didn’t have leukemia in the brain, but because I’ve been on Eliquis, a blood thinner, they didn’t want to enhance any risks, so the spinal tap was delayed another 24 hours. I guess they were afraid I may bleed out? I’m not sure about what they meant there, too tired and in too much pain to ask. Anyway I hadn’t been taking it at home because I was out of it and hadn’t refilled my prescriptions. But I took the medicine while in the hospital, so they wanted to wait til the next day to do the spinal tap.
Because I had leukemia previously and received a stem cell transplant, things like leukemia in the brain are still possible. But they had checked my spinal fluid before my transplant via spinal tap and even ran chemo up there (around the brain and in the spinal fluid) twice to be sure there was no leukemia hiding any where. Luckily, I didn’t have any leukemia in my spinal fluid then, so the chances of me having leukemia in there now were slim. But, the tests had to be done. And my mind was having a ball wondering what I was going to do if it was leukemia in the brain? How could I go through all of this again? I just didn’t think I could myself or my family through it again. All of the cancer worries came rushing back to my possibly cancer-infected brain.
July 13 – They took me down to get the spinal tap/lumbar puncture in the afternoon. They “numbed” the area with lidocaine and stuck a needle in the spine to acquire my spinal fluid. I’ve gotten these before and I don’t really remember them hurting as bad as this one did. When they withdrew (what felt like an extremely long needle), I could feel warm fluid in my body. or maybe out on my skin, It’s hard to explain. It almost made me feel like I had peed myself. But I luckily I didn’t. That embarrassment was saved for another day. Meanwhile, I was told I would have results in an hour by my doctor, apparently they are just dream crushers because I was going to have to sit in the hospital another day with my my leukemia/brain worries.
July 14 – This day seem to go on and on and my cancer-worries were starting to resurface on the outside. Klay could tell I was starting to get nervous. With the MRI looking pretty good and clear, I wondered “what else could it be?” Real fear started to set in and I wasn’t so sure any more that I knew what was happening in my head (not that I ever really did). The doctor rushed in and blurted out, “No leukemia in the brain or spinal fluid!” Phew. I was so happy and felt a heavy weight lifted off my shoulders, but we were left with no explanation for my headaches. And it took a minute to register since the thought have having leukemia in the brain had been haunting me for a few days. Cancer your an effin BITCH!
Meanwhile, I was to see a neurologist ASAP and discharged from the hospital.
July 21 – My headaches were taking over my life. They hadn’t stopped since I got out of the hospital and my head needed a break. Unfortunately, that break meant going back to the ER… again. But before I did that, I had a CRAZY ASS MELTDOWN. I was seriously losing my mind. And I was really thinking I was going crazy. I’d been having conversations with made up people in my head (when I couldn’t sleep), like in depth convos about nothing that had to do with anything that was going on in my life. These people had faces, but they were never faces I’d seen. And I’d lay in bed, unable to sleep, because I’m talking to these people in my head. Seriously. I don’t know if this was insomnia rearing out its evilness in my head? Or simply me just going a little insane? I was pretty freaked.
And my headache on this particular day I flipped the F out was exceptionally bad. But more than that I was putting pressure on my mom to keep the kids and Klay to have to take me and sit there with me in the ER for the night… At this point, I just lost control. I was hitting walls, I was so mad. I was just angry at everything. These headaches took over my life and were effecting so many people other than just me–my husband, my mom, my kids. Every day’s schedules were based around me having these debilitating headaches. And with every thought that could come through my already aching-brain, I kept getting angrier and angrier. I was having an anxiety attack. Klay was putting his hands on my chest trying to get me to slow my breathing. Then he’d lean me over into his lap and rock me, holding me as tight as he could as if to calm down a child. I was really losing it. I couldn’t help but be so mad. Why am I going through this? Haven’t I been through enough? I was doing so much better and feeling so much better and BAM! here comes the world’s longest, most painful headache. If having headaches were an event in the Olympics, I’d definitely get GOLD. We were at my mom’s house when the meltdown began, and mom had to take the boys out of the room because I was so upset and out of control it was upsetting Brody. (Yeah I know Mom of the Year over here).
I just couldn’t keep it together. I’d lost it and I was letting it all go. I was mad that my health was putting so much pressure on Klay, my mom and the boys. It wasn’t fair.
Mom ended up taking me to the ER so Klay could take the boys and get them to bed. After 2 hours we were in and out of there… obviously me having my ER-experience a few weeks prior proved to help things move along a little quicker. I got my morphine and we grabbed some grub and she dropped me off at my house.
July 26 – I don’t remember much about this day but apparently my mom came and picked me up and took me and the kids to her house, I was in a lot of pain so Klay had to take me Medical City to be admitted.
July 27 – I wake up in the hospital. It’s mine and Klay’s 9 year wedding anniversary. What a great way to spend it, huh!?
July 28 & 29 – Some tests were taken. I think of my sinuses, but honestly I don’t remember that much. I just remember… actually I don’t remember anything. Some medicine was changed and that was about it, I think.
It’s scary when you can’t remember weeks at a time. To write this post, I had to look at the dates of old photos, ask Klay and mom when things happened and sometimes I thought they were making things up because I literally recalled none of it. That’s how intense the headaches were and eventually the medications I was given. For a while, the change of a specific drug I’ve been taking for a long time called Prograf, an anti-rejection medication (which suppresses my immune system so it won’t fight my donor’s immune system which could cause major health problems) to Sirolimus, another drug that essentially does the same thing. seemed to be helping with the headaches. For about five days or so, my head was pretty calm. Then the headaches returned along with some issues with my knees.
If I were on the floor playing with the kids or changing a diaper and tried to get up, I had a really hard time. My knees were killing me and they seemed to be only getting worse. We mentioned this at my appointment, but we were just going to monitor it and I was to return in 3 weeks because I seemed to be doing much much better.
From about August 8 or so, I’ve pretty much been in bed all day. All of my muscles began to ache. I could barely stand without assistance getting up (whether it was pulling myself up by my blankets or sliding off the bed ankles first and hoping for the best) my whole body ached and it was getting worse. I could NOT get on the ground to save my life. It wasn’t going to happen. Sleeping hurt. Sitting hurt. Standing hurt. Everything, all the time, hurt. My fingers could no longer grip things, my wrists were weak and stricken with pain, my forearms could no longer hold any pressure and were tender the touch, my arms and shoulders hurt so bad taking off my shirt or undoing a bra made me want to cry and holler out (sometimes I did), my hips couldn’t withstand the pressure of me sleeping on my sides, my butt (especially with my broken tailbone) just effin sucked ass, my legs were shaky and unable to hold weight for a long time, my knees were the worst of all of the pain, and even my feet looked puny and elderly. My whole body was disgusting and withering away.
I’m still experiencing pain.
I had my worst day yesterday prior to my doctor appointment. I got out of bed to take a shower and often times lately, because of my muscle/joint pain I’d let the water hit me all over and plug the drain to try to soak at the same time. I hadn’t had much trouble getting up out of the tub because I had plenty of things to pull up on (and to be honestly gross I wasn’t showering to much from being so depressed and miserable). So since i was getting out of the house and actually seeing people, I figured I should shower. I sat in the tub and finally when I decided I should get out so I won’t be running late, I could not stand with out screaming from pain. My mom has been at the house every day for the past two weeks or so helping with the kids since I’ve been in bed. I hollered and screamed for her but apparently she couldn’t hear me. Finally, I called her and she was on the phone but came in the bathroom once I told her I needed some help out of the tub. She tried to help me up and she could’ve but I screamed from the pain and stopped. We tried several more times but the pain was too much. So we tried a few different ways and none worked and at this point tears were streaming down my face. Eventually she gave me another idea to turn on my side and try to get my stomach across the tub and crawl out and she will just pull me so I won’t have to bend my knees. By the time we did all of this and I made it out of the tub, I was hysterical from how much pain it caused me. I started crying and screaming and talking how depressed I’ve been. I have never been so depressed in my life. NEVER.
Finally Klay made it to the house to take me to the doctor and when he walked me out to the car I could hardly stand. I had no sense of balance, everything hurt, my sight was really awful, things were blurry, I couldn’t tell the distance of objects or of curbs. I looked like I was drunk or seriously crazy. I was so tired I didn’t want to talk. I wanted to tell him how bad the bathtub thing was, but I couldn’t make my lips move. I wanted to tell him about a documentary I’d watched the night before, but I knew I wouldn’t be able to start and finish the story. I was too tired to speak–a rarity for me.
At the appointment, I was too weak to walk by myself. Klay had to hoist me up on his side a bit kind of holding me up as we walked–or well, he walked I stumbled. He kept asking if I was OK or if I needed a wheelchair and I probably did, but I just said I was fine and kept moving. The doctors were concerned and had me get fluids and checked side effects of Sirolimus.
Main side effects are:
- Extreme Fatigue
- Bone Pain
- Body Aches or Pain
- Blurred Vision
- Change in Mental Status
- Tingling or Numbness in Hands, Feet
- Dry Mouth
- Lack of Appetite
- Muscle Pain
- Difficulty with Moving
- Feeling Sad or Empty
- Loss of Interest in Pleasure
- Loss of Energy and Weakness
- Trouble Sleeping
All of these things I tend to have. Of course the list goes on and on. But I’m just summarizing the ones that really fit my case.
Of course every medication has so many side effects… I honestly don’t know how ‘they’ (whoever ‘they’ are) tell one effect from another, but this one was pretty obvious since the time I’d been on it.
But there is some hope.
Yesterday was quite possibly one of the worst and one of my lowest days of my 28 years and today I felt so much better. I got up and stayed awake for going on 14 hours and I’ve moved around, laughed, talked, visited with family and enjoyed myself for the first time in a very long time or it seems like a long time since I’ve been in bed literally all day for the past two weeks.
In other news, I did go to a neurologist and he was a dickhole. Yes, a dickhole. He just told me a bunch of stuff that’s kind of obvious and then a bunch of stuff that would put a bunch of money in his pocket, of course. First things first, I need to eat better. #duh Just eat vegan. #saywhat I wanted to say “homie, I love me some steak, so that’s not gonna happen.” And he gave me a line like “everything needs to come from the ground and have roots.” Psssh… I can’t eat like that all the time. You ever heard of biscuits and gravy? And coke? (Soda ya’ll… not the other coke.)
Then he told me to pay three grand to stick some device on my forehead and watch a bunch of images and my brain would mirror it’s responses and somehow fix itself, in time. But insurances don’t cover it, so yeah he gets a piece of that pie. And he told me I needed to do a sleep apnea test. I probably do need to another one of those, but I ain’t sleep studying it with you, man. I’m like I want to fix these headaches and you didn’t do any tests or really examine me, and I had to pay 80 bucks for this? PISSED.
It’s now past 1 AM so I should probably call it a night. Pray I have another good day tomorrow.
Hopefully on the mend,