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Health Post 5: Years of invisible, chronic illness summed up
The post where you want to know everything, but it's so hard to look back and relive it all.
Ive been avoiding this post on purpose. It’s hard. It’s raw. I’m still in it so it makes it that much harder. But I’m finding that as I do these therapies, I need to start writing about them or I simply just might forget. It’s a lot, it’s overwhelming and it probably won’t make any sense to most of you. But okay, so here we go!
As a kid, I remembered a couple tummy aches here and there. Growing up, I didn’t really get sick. Headaches, backaches and sprained ankles bothered me as a high school athlete and scholar, but I didn’t see a doctor. I didn’t see a doctor regularly until I became mom and had prenatal visits. After four pregnancies, my body has definitely changed. I’m in my twenties, but man, my body is somewhere else. Here we go.
2011- First migraine I remember. The pain was so unreal.
June 2015- I came down with my first adult fever that I know of, chills, fatigue, weakness
2017- Unrelenting migraine that sent me to the hospital. They gave me a shot. I fell asleep. I woke up and the pain was gone. Doctors prescribed me pain meds so next time it happens, I wouldn’t have to go to the hospital. Id just take a pill. Pretty cool to me.
2018- Sciatica so bad it made my entire lower left side of my body in pain. I could barely walk, sit, stand, roll over, lie down, or MOVE. I was 12 weeks pregnant, in charge of a toddler, and teaching. I actually *tried* to go to work after the ER told me I was okay and there was nothing they could do to help me. I barely lasted an hour, cringing in pain, shuffling like a senior citizen, before my principal walked into my classroom, asked me to sit in the wheelchair, so I could be wheeled out and driven home by our PTA president. Embarrassing. “Effort seen and I commend you, NOW. GO. HOME.” My principal was a seriously real and kind man.
2018-2020: I sent myself to urgent care a few times from unrelenting vomiting due to migraines. Apparently I waited it out too long so they were classified as “intractable migraines” and I needed IVs and meds to bounce back. My doctors told me to stop waiting to see if I could wait out the pain. “Take the pill immediately at any onset of pain,” they said. But what if it isn’t a migraine? I said. What if my head just hurts? How will I know the difference? “Take the pill immediately. You see what happens when you don’t. You end up here, needing IVs and meds. Take the pill immediately.” So I did. At first it was just tylenol, advil, then their pill. But when that didn’t work, they gave me stronger ones and different ones. I didn’t think this was cool after all.
May 2020- January 2021: Positive pregnancy test quickly followed by relentless nausea, vomiting, dehydration. Wait a few weeks, maybe it’ll stop. Wait till the first trimester, maybe it’ll stop. It didn’t. Vomiting became my number one job. Not taking care of the kids, not running my business, not renovating the house, not getting a whole new septic in the yard, not meeting with contractors, not making sure my kids didn’t interrupt my husbands live teaching sessions, or feeding the chickens- it was VOMITING. (To be clear I did all those things but running to the bathroom took precedence)
“Oh, it’s still bothering you? Sounds like you have HG Hyperemesis Gravidium. You didn’t get this with your other two? Usually it happens every single pregnancy. Huh. Weird.” -my midwife
I held off on medications as long as I could but when it didn’t let up halfway through, my midwife gave me three different prescriptions to try and survive. We were in the pandemic, my kids were home, my husband was home, and my midwife was watching me tear up on zoom constantly. It never let up and the nausea persisted with a vengeance until she was born. I also developed placenta previa, a condition where my placenta wasn’t moving to the right spot. I could not longer see my midwife and had to see an MD. And since my placenta was blocking the baby’s way out, I was now a high risk pregnancy. Not one drop of blood, they said. DO. NOT. BLEED. Whatever you do, do not cause yourself to go into pre term labor or bleed in any sort of way. Doing so will endanger your life and the baby’s life and you’ll have to rush to the ER immediately and deliver her if this happens. Welp. Then I watched Chrissy Teigan and John Legend lose their baby due to the same condition I had. What are you doing God? I pleaded on the bathroom floor as my head was in the toilet. Not my will but Yours. But is this really your plan? This is what I get for seemingly trying to always do the right thing?
January 21, 2021: Traumatic cesarean section, stabbed 5 times to get the pain meds in, had debilitating headaches and migraines for days after, couldn’t hold baby or walk to the bathroom to pee without my head spinning in pain and me crying so many tears. Migraine subsided after 5-7 days of pure misery.
February- April 2021: Persistent headaches, migraines, nausea, lack of appetite, lack of sleep, fatigue, saw providers, ran blood work, ran urine tests.
Your blood looks good. Your pregnancy test is negative. Can you fill out this survey? Maybe you’re just stressed and tired and sad.
April 21- June 21 2021: Pregnancy number 4 came and went in a blink of an eye. Suffered a tragic loss in addition to enduring back to back traumatic events. I was in the ER twice in less than 48 hours. That lady screaming at the ER doctors and nurses to help her daughter? That was me. The lady crying and screaming walking the dark streets at night outside the hospital? Also me.
Really God? REALLY?! Have I not done what I’m supposed to do? Work hard. Be a dutiful wife. A devoted mother. A keeper of the home. Running a business. What. Are. You. Doing. To. Me. To us. To my family. To my kids!
June 22 2021: Panic call to my friend, can you please drive me to the hospital? I feel awful. I don’t know what’s wrong I don’t know what to do. We went to two different urgent care centers. The first one had a long wait. So we drove half an hour to another one. Waited a half hour, then after convincing them it wasn’t covid, (they kept trying to put me in the covid wing) they listened to me. I waited outside in the parking lot until there was a bed for me. My friend dropped me off so she could grocery shop for my family. I looked horrible, I felt horrible, and truthfully, dying seemed less painful than everything Ive gone through. I looked pathetic in the parking garage. If you walked past me, I looked like I had been sitting out on the street all night. I basically had been.
What in the world is happening to me?!
“Are you okay ma’am?” I look up and someone cautiously stops and stares at me in the parking lot. Im a wreck. I probably smell. I’m ok, thank you. Just waiting to get seen inside… *stranger walks away*
The urgent care doctor sees me. She looks at me, shuts the curtain and says, “I think your body is in shock. Ive lost three myself…” and she finally looked at me like a human, the first time someone recognized my pain, apologizes for everything I have and will have to go through and tries to do what she can to help me. She gives me 3 bags of fluids, pain meds, tells me I’m dehydrated, and then lets me take a nap.
Can you come pick me up now please? I text my friend. Yes, just finished grabbing your groceries. Be right there.
June 23 2021: I stay in my bed but I don’t sleep. I leave the house in the morning but I don’t know where I’m going. I drive for half an hour, only to end up at Target, sobbing in the parking lot, when I only live 5 minutes away from it. I call the only person I knew to call.
“What are you doing there?! Get. Out. Of. There. GO HOME. AND REST. I’LL TAKE CARE OF IT!” I don’t want to go home! I started sobbing. I cant go home! My baby died there! I need to do things for my kids. My kids need food. They need stuff. I can’t just go HOME!!! I am sobbing my heart out, in the middle of the Target parking lot, to my friend on the phone. Somehow I managed to get a cart, grab some things, and go home. I don’t remember much. I muttered to someone who smiled at me and my cart in the aisle… Im redecorating my bathroom! In truth I was trying to wipe away all traces of trauma and tell myself what happened in that shower didn’t actually happen.
June 24, 2021: I open my front door and everything I needed from Target and more was placed on my doorstep. Even a plant, for my baby. Presents. A letter. A book called Jesus > Religion. I was wrecked. It was my husband’s birthday. We didn’t even talk about it. Thank you friend.
June 29-30, 2021 I retreat. I book an overnight to the lake house and runaway. I hide. I cry. I shower. I read. I eat. I try to get it together. I can’t. I’m a mess. Im sobbing everywhere I go wondering what kind of God allows this. Watches this. And lets this unfold. I almost didn’t leave. I didn’t want to go home. My firstborn was recovering from back to back concussions and wasn’t feeling too great either. If I leave, will another bad thing happen? Because I just can’t handle anymore. And I had this very strong feeling that the worst was yet to come.
July 7, 2021 My migraines are still here and the meds don’t work, I use the care chat to get help
July 8, 2021 I see a PCP who can attend to me that morning. She switches my pain meds to something stronger, since it’s not working. Then she added another one to up my pain tolerance to help the first one work. She cruelly criticizes the last few events that unfolded. It was awful to listen to her speak about my body, my baby, and my husband in that way. NEVER. AGAIN. I said to myself as I walked out of there. I’m done with this kind of care.
July 12, 2021: I go see my midwife. This nurse does my intake. “I see you’re here for your first prenatal visit!” (she turns around and shows me her big belly in all its glory) My face drops. She pauses.
Actually, I had a miscarriage. I’m here because I don’t feel well. She excuses herself, and grabs the doctor that was there with me during my January c- section. We sit down together and I tell her what happened. She actually tears up with me. “I know you. I remember you. You were happy. You were smiling. You were laughing. You were chatting with everyone in the surgical room.” I know, I said quietly. I just don’t fell well.
“This is not you,” she said. FINALLY, someone sees it. I breathe a sigh of relief.
I know, this is not me. I just don’t feel well. I don’t know what to do. My head hurts, Im nauseous, I can’t sleep, I lost my baby, my kid is sick, and I just need to get through this”
She gives me new medication. A gentle medication. “A beefed up benadryl” she called it. Gentle, safe, just to help me eat and sleep for a bit. Okay. I fill the prescription and start taking it.
July 13, 2021: We take my daughter to Seattle Children’s to see a concussion specialist. Hospital to hospital to hospital. I can barely fathom this new life.
July 2021: My baby and my eldest daughter go to physical therapy twice a week to work on their perspective issues. I find myself running from appointment to appointment, fixing sickness after sickness. Right across from the dreaded hospital that gives me PTSD and trauma and anxiety every time I’m near it. I relive some of the worst days and drives of my life, just to bring the girls to physical therapy. I’m nearly always in tears, quiet, and off to the side. The therapist looks at me, “Your daughter got hurt twice, your baby is in here too, is everything okay at home?” I know that question. I am a teacher by trade, I know why they ask that question. Now someone is questioning my parenting skills?! Are you kidding me!!!! What. In. The. World.
July 18, 2021: We try a date night. Time for some mom & dad time to take a quick break from the mess of everything that’s happened. It was lovely. We ate, we laughed, we enjoyed, we walked, we talked. Okay some normalcy.
I wake in the middle of the night in chills, sweats, nausea, vomiting, migraine. My husband is actually RUNNING between my daughter’s bedroom and mine, in the middle of the night, wondering which girl he needs to attend to first. He looks at me in horror as I’m in our bed and he doesn’t know what to do. We know what the ER says and does, we know what urgent care says and does. So he props me up with pillows and blankets, makes sure I can call out to him if I need, then he goes back in our daughter’s room because she can’t sleep and she’s nauseous and ill, too. If you’re going to kill me God, can you just kill me? I can’t take much more of this suffering. And really? My baby and now my daughter too? What in the world God? I hate this. And I don’t like you very much right now, at all, or maybe even ever.
July 20, 2021: I text my friend. My friend tells me to go see her naturopath. She’s helped her, listened to her, so I do. I come in weak and frail. She asks me what’s wrong. I just had some food poisoning the other day. “How did you know it was food poisoning?” She asked. I actually paused. My husband didn’t get sick. If it wasn’t food poisoning, then what is happening to me…?
July 26, 2021: My middle daughter sees her specialist and gets an ultrasound for her kidney. She’s been on constant antibiotics an infection since December 2019. I’m losing my mind.
July 28, 2021 : Follow up with my naturopath. My blood work came back “clean” again, except for some dehydration. However, she didn’t stop there. She told me she’d listen and keep looking. So I agreed to keep seeing her.
August 23, 2021: I start a new job and begin working from home. We needed health insurance in this madness.
August 24, 2021: Follow up with my naturopath, I tell her things are the same and getting worse. She tells me she wants to try a food sensitivity test. And I sit there thinking to myself, you could have done a food sensitivity test on me in July, last month. When I was already sick and nauseous and not eating. But okay, let’s do this test.
September 8, 2021: At this point, I’m still vomiting, nauseous, headachey, and just getting worst and worse. I’m working 40-50 hours a week training for a job that is really hard to understand and do. Oh my gosh. I run to the bathroom and vomit in between work and do my best to look like I’m not crying and vomiting every time I’m in a zoom meeting. Fake it till you make it! I was a pro at this.
We’ve modified our diet to things I knew would work (paleo, whole 30, gluten free) and nothing helped. So I ordered one of those celiac tests online and pricked myself and submitted my blood after we put the kids to bed. This. This is what I’m doing while my middle child turns 3, I don’t have the heart to be with my baby, and my eldest, well, she’s pretty smart and aware so I really don’t know how she’s dealing seeing me like this. Good one, God. Keep it coming! I’m at my wits end, and you know this. What. Is. The. Big. Plan. Here.
September 9, 2021: My baby is 3! I work all day, enjoy paleo cake with her at night and celebrate her Paw Patrol style.
September 10, 2021: I woke up, got up from bed, felt really dizzy and weak. I looked around for my husband, he was in one of the kids rooms since someone had woken up in the middle of the night. I try to call out to him, but I can’t. So I very slowly crawled to bathroom and profusely vomited for two hours. “You’re still going to work today?!” He’s looking at me in disbelief. Well, I mean we could go to the ER and tell them what?Im vomiting again? You know what they say and what they do. I’ll be fine, I said. I’m almost done with my paperwork and we have a big quarterly meeting today. If I can just make it to 11:30, then I can just turn my camera off, sit at my desk, and hunker down for the rest of the day. He’s actually just staring at me.
I work because staying still, feeling my pain, didn’t work for me. I had to focus. I needed tasks that made sense to me. Work made sense to me. But I didn’t get to hunker down, I ended up leading a breakout sessions for employees from other countries. Was I out of breath, exhausted, nauseous and holding back vomit the whole time? You bet. Could anyone tell? Absolutely not. The show must go on.
September 24, 2021: I receive results of food sensitivity test. I’m sensitive to everything! No wonder paleo, whole 30, and gluten free didn’t work. Things like lettuce, onion, egg were all red flags in my body. I also took an H. pylori breath test and ordered a Genova stool test kit. I am still not eating. Still not sleeping. And still wondering what is going on.
September 27, 2021: H. pylori is negative my doctor says. But I’m feeling worse. We have to do these tests to rule out things. Its a test of elimination. So we know what you don’t have and we will find what you do have. I don’t have time for this. I am just getting weaker, Im shaking, I dont feel well. Not at all. My hands are tied, she continues. I can’t do anything else until we get the test kit. Your GI referral is already in, I’m doing all the tests I can do, but because of insurance we have to do it this way. I put in for a CT scan but it got denied until you get an ultrasound.
October 4, 2021: I begin disability medical leave. I barely have energy to walk or talk or do things on my own, let alone work. My breathes became labored, my throat hurt, my muscles hurt, I am fatigued beyond all heck. And I am still going.
October 6, 2021: Visit the office, Genova stool kit has not yet arrived. This is our next step in figuring out what’s wrong. Apparently it got lost in the mail due to the pandemic. Great.
October 9, 2021: Feeling weaker, worse, and now sorta panicking. I text a friend. This is my Hail Mary. I had nothing else.
October 11, 2021: She replied, “HOLY SH*T YOU ARE ME! Are you around to zoom?”
October 12 and October 13: Follow up with my naturopath again. She didn’t know what else to tell me. Our GI referral was buried, we ran all the tests we could in office, my blood work kept coming back clean, yet I truly looked and felt awful. We both knew it and we both saw it. I should be in a hospital is how I felt, but they’re telling me I’m healthy. I ask her about a certain test I looked up online and read about. I listened to podcasts and dug deep. I’m relentlessly researching my condition. I read a lot. I want a Hydrogen Sulfide SIBO breath test, the one that tests all SIBO, I want the new one. It was just released a few months ago. “This is cutting edge” she says to me. TEST ME, I HAVE IT! I say back. Your labs come back clean, they’re just showing you’re dehydrated. JUST?! How long have I actually been dehydrated. I can’t retain water. I vomit a lot. And doctors have been saying this to me. This is just okay?!
“I’m not sure what else to do at this point, I’m going to get together and ask my colleagues about what they think we should do. For now, just go home and if anything changes, go to the emergency room okay? I’m on call this week. If you do end up going, have them page me and I’ll work with them and explain what’s been going on. Okay?”
These quotes both relieved me and terrified me at the same time. I was in tears. I was in disbelief. I was in shock. I bit my lip, took a deep breath and said okay. I walked, more like hobbled because I was so weak, to the sidewalk where my husband and kids waited. We drove home, quiet, crying silent tears. What is going on?
I tell my friend everything that’s happening. She works behind the scenes to find me the right doctor who can help me NOW and listen to me NOW.
On October 14, 2021 we drove into the city and I received my first ever vitamin therapy infusion. She was a very kind doctor, she held my hand and cried with me as I told her about the event of the past two years that landed me in this position in the first place. She shared her pain from years ago that she still felt to this day. “The body remembers. You can’t just push this away. Have you read The Body Keeps The Score?”
After my infusion I did body work with a chiropractor and not only did she make my migraine disappear and bring my appetite back, she also talked to me about chakras and meridians and energy. What is this place? I thought to myself. Where am I? These doctors are actually helping me and they see the pain I’ve been trying to articulate for awhile now.
October 15, 2021: Infant Loss Awareness Day. I worked with two local mayors office to declare proclamations on this day. No matter how sick I was, baby would be remembered. On this day and forever. And if any other mama out there felt as heartbroken as I did, then I wanted her to know her loss matters.
October 19, 2021: I receive my second vitamin therapy infusion at home. I was too weak to go anywhere, I have a migraine, I’m dehydrated, and my BP is weak and low. The nurse gives me her personal cell phone number in case anything happens. She used to be an ER nurse and told me she is close by if I need anything. Wow. Either I was in really bad shape or she was extremely kind, I was so so grateful to her.
Oct 22, 2021: I check in with my primary care but I’m starting to lose all hope in that system.
Oct 28, 2021: First visit with my new doctor (we pushed it back because of a big storm warning last week) I can’t believe I’m finally seeing someone who knows how to help me! We did an hour long intake over the phone about my medical history, all the way to my birth and childhood. It was fascinating. During the two hour office visit, we talked about my scans, threw around some ideas, grabbed the test kits that I so desperately needed, and before I left she did neural therapy and injected procaine into my c section scar to help heal the scar tissue. I got my first ever treatment plan that actually started to make sense.
October 30, 2021: 3rd IV at home
November 1,2021: 4th IV at home + got my labs drawn. The phlebotomist looked at my lab orders, looked over at me and said, “But you’re so young. And why are you here so close to your birthday?!” I’m really sick, I say. “Well you have two very good doctors, ordering very good tests, who are checking lots of things. Happy Birthday sweetie”
November 2, 2021: My 28th birthday. Bittersweet. I actually had energy to get up and eat something and enjoy my family. Thank God for this.
November 3-7, 2021: We all get hit with a stomach bug. I feel worse on top of already feeling worse.
November 8, 2021: my 5th IV at home
November 9, 2021: My GI referral finally went through, only to be lectured on the Matrix blue pill/ red pill scenario, for him to raise his eyebrows at me arrogantly and ask me why I knew about MCAS, tell me there is a psychosomatic component to this and offer me pills or surgery. Amazing. All within minutes of meeting me, not knowing my medical history whatsoever or even my name. He called it “standard patient protocol” and said that they treat “based on algorithm.” He should be so lucky our conversation wasn’t in person because I wouldn’t have been able to keep it together.
DO I LOOK LIKE AN ALGORITHM TO YOU? I’m a living breathing human. I’m a mom to 3 daughters who is desperately wanting to be alive for them. What the actual f*! I wanted to slap him across the face, make him go through what I went through and then he could have the audacity to call it an algorithm. You wouldn’t survive in my shoes. He didn’t even look old enough to have a white coat. Disgusting. He actually said “How do you know about that? The only people that test for that and work for that are with the CDC.” I said, if you haven’t eaten, slept, and feel worse and worse everyday while your labs come back clean and no doctor is helping you. Wouldn’t you research your condition? To figure out whats wrong?! I’m a young mom to 3 kids. SO ARE YOU GOING TO HELP ME OR NOT!
I guess he chose NOT. I could have predicted how this entire appointment would have gone, but instead I was forced to live through it. It was as awful as I imagined, actually worse. My husband was there to witness it all. This. I yell. THIS IS WHAT DOCTORS DO TO ME, AND SO MANY OTHER WOMEN. So. Arrogant. And WRONG. His office never called me back after I left messages and their referrals didn’t go through either. This system is not designed to take care of its people.
November 15, 2021 : Yet another lab draw to look for more things/ mineral panel. My vitamin D was extremely low. And so was my progesterone. When I had asked my naturopath to check my vitamin D she said, “I don’t test Vitamin D. Everyone here is deficient.” So then I asked another doctor, because I really wanted to know, and she really wanted to check my vitamin D too. She was alarmed at how low it was and taught me ways to increase it ASAP. The difference in care speaks volumes.
November 16, 2021: Follow up with my naturopath and tell her what my functional doctor is saying + my 6th IV at home. I start to notice a difference in care of my naturopath.
November 19, 2021 : I went to a dreaded ultrasound. Suggested by my naturopath, not my functional doctor. She asked me what brought me in, so I tell her what’s been going on… of course she says, “Are you sure you’re not pregnant?!” It was just awful and I relived my worst nightmare only to get no results. I’m healthy, apparently. Looks great! I believe at this point I am down 40lbs+ from not eating or sleeping.
Can we please go do something fun? I beg my husband. I’m tired of this. I hate this! Im in tears, again. He drives across the street, lets me out at Lowes and we pick out anything and everything I want. It was really sweet. But also really sad. I knew why we were doing this. He knew why were doing this. Nobody else in the store or in line or anyone working knew why we were doing this.
Thanksgiving: I arrange for a feast. I spend most of the day in bed and come out at night. I put on the dress my family got me for my birthday, LAST YEAR. “We’ve been waiting a long time to see you wear that dress,” he says. We had a nice dinner.
November 30, 2021: I receive the results of my Dutch Hormone Test. My naturopath doesn’t know how to interpret the results. I’m also bleeding at time I’m not supposed to be bleeding. So I go to my naturopath per her request. She suggested taking out my gallbladder. Nope. That’s what doctors do when they don’t know. They start being invasive and cutting to guess. Do you know how many women I’ve talked to and got unnecessary body parts removed? Its insane. And I know its not right. Not me.
December 1, 2021: my 7th IV at home, received big test labs that gave us an answer. I cried. It was horrifying to know what was causing all this.
December 2, 2021- Drive into Seattle to see my functional doctor. She has a plan. She’s seen this before. Confirmed it with labs and results. And is going to treat it. YAY! THERE IS HOPE. We come home feeling better than we’ve felt in awhile.
December 3, 2021: my 8th IV at home
December 10, 2021: my 9th IV at home
December 11, 2021: My baby girl is now 6. “I don’t remember you not being sick mama” Like a knife stabbed in my heart and twisted. I worked so hard for my girls to show them I love them and I’m there for them, to spend as much time with them as I could. I even quit my full time job to stay home with them. And she doesn’t remember. All she remembers is this. Great. We threw her a mermaid sleepover party with her best friend and her family. It was with my friend who drove me to urgent care this summer. We pretended like everything was ok, that I wasn’t sick, and that it was just like old times. I needed that.
December 16, 2021 : my 10th IV at home
December 17, 2021: First visit with another functional doctor to start the first round of treatment suggested on 12/2/21. YAY! We’re excited, we’re hopeful. We consulted with the doctor and then tried nose ear ozone insufflation. I felt great after. Even went home and ate.
December 18, 2021: Woke up vomiting, nauseous, weak, faint, and my head was pounding severely. The vomiting spell was stronger, longer, and rougher than all the others. This is what death feels like. This is what dying actually feels like. I texted my IV nurse and because it was so so so so bad, went to ER, hoping they would actually find something. Or scan me. Or do SOMETHING. Instead, I sat in the waiting room while they took in people who arrived AFTER me, didn’t give me a CT scan, didn’t run any extra labs or order any tests I asked for. They just gave me a banana bag and did regular blood panel, said I’m too complicated for the ER, asked me if I’ve taken a pregnancy test and sent me home. I should mention they eyed my IV pokes in my arms and made their own judgments then and there.
“You go to the ER and we triage you. Your heart hurts, you see a cardiologist. Your stomach hurts, you see a gastro. You have autoimmune, you see a rheumatologist. You want labs you see an internal medicine doctor. I can’t do any more for you here.”
Honestly, this made no sense to me. The body is one piece. The organs and body parts are different pieces to the puzzle. They shouldn’t be looked at separately, they should be looked at together. Like a cohesive system. DUH! But nope, allopathic medicine is trained to match symptom with diagnosis, never fixing it, just making money off a pill and a procedure.
December 22, 2021- my 12th IV at home
December 25, 2021- I made it to Christmas. Wow.
December 28, 2021- my 13th IV at home. Except this time the nurse left me with a needle in, went outside to her car to do some stuff, and gave me my IV pole and had me control the drip rate on my own. This is a new nurse, not the one that’s been helping me before. The IV finished and the needle was still in my arm. I was cold. She didn’t check my BP or my temp. This is pandemic care.
December 29, 2021- Big day of appointments and treatments in Seattle. The PNW received heavy snow, below freezing temps and we were snowed in. I actually woke up to my doctor calling me, asking me where I was. What?! I profusely start crying and apologizing on the phone. I’m so sorry. This has never happened to me. I don’t forget. I don’t miss appointments. I’m not late to things!
I should mention people fly all over the country and the world to see these people. I was downright embarrassed to completely forget. My uber driver was a literal godsend (he was from Montana and knew how to drive in blizzards so he handled the icy roads and curvy hills and my car anxiety like a champ). And my doctors were able to rearrange the schedule to fit me in all day. I guess the snow was in my favor after all.
December 30, 2021- Based on what my chiro saw in my body and how my sickness was affecting me, she asked my doctors to do another blood draw + my 14th IV in office
January 4, 2022 -appointments and treatments
January 5, 2022- treatments and appointments
January 6, 2022- my 15th IV in office with yet another new doctor I met in office
January 7, 2022- Happy Heavenly Birthday, Nick! We did Family Zoo Day, for you.
January 8, 2021- Another chiro adjustment because my back, legs, hip, feet, head, shoulder, arm, it all hurt. It was all weak and misaligned.
January 11, 2022- treatments and appointments
January 14, 2022- two back to back appointments with specialists. Finally have a nutrition plan I can eat. ( note this is the first time someone knew what I could eat without vomiting) Labs were explained from the lab draw on 12/30. Holy moly they found some other stuff.
January 19, 2022- more treatments and appointments
January 20, 2022- worked on c section scar and emotional scar release, my 16th IV in office, this time I tried a Bio Ocean hydrating one
January 21, 2022- My baby is one! Thank God for a healthy baby and a year of life. You have brought us so much joy during this trying year. (If you missed the post on her pregnancy and birth, click here to read )
January 26, 2022- Elliott Ray’s due date. Instead, I bought flowers at the store and said to the cashier, “This is for a memorial” I didn’t tell her it was for my dead baby that I was supposed to be delivering today. Instead, I just have flowers and my body is deteriorating.
January 27, 2022- appointments + therapies, my 17th IV in office
February 2, 2022- Truly, I felt a little lost based on my labs on 1/14. With no follow up plan. Just questions. Based on my reading from Toxic by Neil Nathan, I decided to consult with another specialist.
February 12, 2022- my 18th IV at home
February 15, 2022- meet with my nutritionist again to check progress + another blood draw for another test
February 16, 2022- chiro adjustment with vibrational ultrasound to create space for movement in lower back and in the chest and lung muscles
February 17, 2022- third visit with my new doctor to do ART/ muscle testing to look for other possible sources of illness and infection. Life is whirlwind and I do believe I am running on autopilot.
February 19, 2022- my 19th IV in office
February 28, 2022- I get an at home lab draw for another test. He pulls 31 vials of blood from me. We have to do several pokes since my blood started to clot.
Tomorrow my doctor tells me what those blood tests say. I read a lot. Im pretty sure I know what they say.
I really don’t have much. This is my brain dump. This is my overflow. You guys have been asking. And I haven’t wanted to share. But now, too many things have happened and I don’t want to forget. So here we are.
Women have been praying for me. Sending me verses. Sending me books. Friends have been encouraging. But unless you’ve walked the invisible chronic illness life + life after loss, I’m not sure I want you to say anything. When people try, it actually ends up being hurtful. When they don’t know what to say and fill space, toxic positivity comes out and its unbearable to hear. “You’re still sick? But have you tried xyz” doesn’t help. Sit with someone in their grief and sorrow. Don’t ask them to explain it to you, read about their condition on your own. Feed their family. Love on their kids. And pray for their health and understanding and take care of yourself so you don’t end up like me.
That Mama With A Purpose