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jedimasterkelly · 3 years

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Shit happens when you're a woman. A lot of shit. Bad shit. And a lot of the time, you will run into doctors who do not listen to you. Will not care about you, and will not take you seriously.

This story is about the Great Cancer Scare of 2020.

I was 49, and 3 yrs post menopause. I was pleased about that, as it means no more period ever. I could deal with the occasional hot flashes, and the snapping of necks of anyone who dared bother me. Then in May of 2020, after the pandemic fully hit and the University I work at closed and sent all of us to work from home, I got very sick. Not from Covid, thankfully, but something else. I had started bleeding, and it wasn't menstrual blood. It was bright red and HEAVY. I was filling post-natal pads within 2 hours. I called the Women's Clinic where my OB-GYN lived. They couldn't see me until July. WTF! I called my GP, who got me in on an emergency basis, I mean, 3 yrs post-menopausal women don't just spring a leak, you know? My ovarian function had been almost nil for 3 years. He called my OB-GYN and demanded I get seen right away. They made an appointment for 2 weeks later. Keep reading, because it's quite a ride!

Seriously! 2 weeks later!

In the meantime, my GP discovered my thyroid was tanked out, so I was put on Levothyroxine 25mcg. It helped a lot. I started to feel a little bit more human, at least in the brain area. I finally got in to the OB-GYN, and he did a biopsy and trans-vaginal ultrasound. We got the results 2 weeks later and he called me in to go over them. He said I had hyperplasia with atypia. Cells were dividing rapidly, and he was very concerned. He recommended an endometrial ablation, or a full hysterectomy. At 49 he wasn't concerned with me having a sudden maternal urge (I have no kids), so he was fine with either choice. I decided on the hysterectomy, because why not? Endometrium grows back after an ablation, and why bother at my age? Just yank it all and let me get back to my life.

He said he didn't feel safe doing the procedure, since the cells were most likely cancerous and rapidly dividing, so he sent a referral to one of the cancer centers in OKC. I expected a call within a couple of weeks. I mean, really, if I have the early stages of endometrial cancer, they'd call me in immediately, right? Right?

Crickets. Literal crickets for 4 months! I was very concerned, hell, worried I was going to get full blown cancer and these jackasses weren't going to try and help me at all. I called OB-GYN several times during that 4 month period, and was told the cancer center in OKC wasn't returning their calls. I called them numerous times, and could never get a person on the phone.

I was told it was the pandemic. The pandemic was shutting everything down and causing huge backlogs for non-Covid issues to be seen. I told OB-GYN to refer me to the oncologist from Tulsa, who also worked once a month in Stillwater at the SMC Cancer Center. He didn't want to, he wanted me to see the doctor in OKC (who wasn't returning anyone's calls!) I called SMC Cancer Center and asked how soon I could get in with Dr. Thomas. His office called back within 2 hours asking for my chart and biopsy results. I had the Womens Clinic send my information to Dr. Thomas in Tulsa. Within a week, they called and had me on the schedule to see him in Stillwater on his next visit.

This is where the story gets good. And by good, I mean, WHAT THE ACTUAL FUCK. Thanks for sticking with me this far.

Got in to see Dr. Thomas. I researched him and learned we have the same Alma Mater. That day, we were both wearing t-shirts from said same Alma Mater. Instant bonding! I also work in Administration at said same Alma Mater, so we spent some time discussing (gossiping) about my department since he had taken classes with a lot of my faculty during his undergrad. Then he got serious and handed me my biopsy report. He told me he was going to assume I wasn't shown this, since I am:

1. A Master's of Science graduate student in Education Leadership - this making me a researcher who knows how to do research, do research, and understand research.

2. Work full time in a Physical Sciences department at a Big 12 University.

3. Edit manuscripts for my Dept. Chair, thus proving I am scientifically literate. You can't edit scientific manuscripts without having a good, solid knowledge of said science. If he's alternating between "adsorb" and "absorb", I have to understand his research in order to correct his manuscript. This is important because his manuscripts have to be peer reviewed before they can be published in a reputable journal.

"Read it to me, out loud," he said.

I started reading from the paper in my professional scientist voice. It didn't take long before I began to falter as I came to the realization I had been lied to.

"Read it again," he said.

This time, I read it with a lot more heat in my voice.

Diagnosis: no hyperplasia with atypia, no abnormal cells detected

Dr. Thomas waited for me to explode. I didn't. I just stared at him in anger and horror. He offered to do another biopsy to make sure, but he suggested I fire my OB-GYN immediately and find someone who actually gives a shit about me.

I was still randomly bleeding, 6-9 weeks at a time, so we agreed on another trans-vaginal ultrasound and biopsy. The attached photo shows he took 3 samples from my uterus. He wanted to be sure.

A little ditty about endometrial biopsies:

They hurt like a motherfucker.

Take 2-3 ibuprofen before you leave the house to go to your procedure.

Relax. It usually only lasts a couple of minutes. The doctor normally takes 1 or 2 samples. Pinch, snip, clip, done.

Not this guy. He wanted to be surely sure.

He went for a 3rd pinch snip clip. My uterus seized up in the most painful spasm I ever had in my life. I almost came off the table. He was seated on a little rolly stool so he shot back away from me before I could connect his head to my foot. He triumphantly held up his little weapon of Uterine Destruction and declared, "Got it!"

"Yeah, you almost got your ass kicked mister," I growled at him.

"It was worth it to get this beauty of a sample."

So, after a biopsy of your uterus, expect some bleeding and cramping. I had severe cramps for 2 days. I was not amused. We're talking laying in bed with a heating pad and ibuprofen every 4 hours kind of cramping.

Got the results back in a couple of weeks. No cancer. No hyperplasia. No abnormal cell growth. He recommended I find a new OB-GYN fast. I decided fuck it, I'm done. I'm never seeing another OB-GYN ever again.

Dr. Thomas said several times he's convinced my issues are endocrinal. I filed that away in the back of my mind.

(if you ever do test positive for cancer and you are in the Tulsa area, I highly recommend Dr. Eric Thomas! Make sure you have a sense of humor with him.)

My GP started pressuring me back in March of 2021 to find a new OB-GYN. The Women's Clinic has several, but they have a fucked up rule you can't switch doctors there. So if you go there, you are stuck with the same doctor and can't move over to his colleague on another floor. I saw my GP again, and asked if he was still best buds with a gynecologist who had his own clinic. He was always full, and not taking new patients, so GP would have to call his buddy to get me in.

Which he did. Buddy-GYN's office called the very next day to schedule me in. He had been sent my chart and was concerned about the long bleeds (6-9 weeks in duration) and why the fuck were they happening after being 3 yrs post-menopause.

I went in for a consult in April of 2021. First thing out of his mouth, "Has anyone ever talked to you before about PCOS?"

I laughed.

I laughed because every GYN I saw over the last 20 years told me I didn't have PCOS, endometriosis, or any sort of hormonal issues. I was just fat, lazy, and a piggy pig pig. I actually had one OB-GYN tell me to go on The Biggest Loser. Fat shamed while sitting there naked on his table after an invasive exam of my female bits. Thanks a lot, asshole.

I told him about that. He informed me he could tell by LOOKING at me I have the classics signs of PCOS. I use an epilator on my crazy man-hairs, so he asked if I was tweezing or waxing. I about fell out of my chair. Nobody ever believed me that I was having to remove crazy thick hairs off my chin and neck all the time. He asked if I ever had ovarian cysts. Affirmative, I was diagnosed with ovarian cysts the first time one exploded back in 1994. He stood there, holding the bridge of his nose and shook his head.

"Well, going by your chief complaints, your abdominal circumference, history of bursting cysts, and no period for 3 years, I am saying you have PCOS."

He went on to discuss my need for an appointment with an endocrine specialist, he was convinced my thyroid tanking out sent my ovaries back into production, and now my hormones are all over the place, most likely, and I needed specialized care.

He must have talked to GP, because I soon got a call from the endo clinic to come in.

This post is already long and tedious, but I am happy to say I finally have 3 doctors who listen to me. My new Endo doc tripled my levothyroxine and scheduled a follow up blood test for next month. Buddy-GYN talked me into a pap smear and cervical exam in July as well. He also wants a mammogram, which I begrudgingly need to schedule so he doesn't chew my ass in July when I walk in with no results. GP is working on my other issues (weight, bad fluid retention, etc...). We discovered from a blood test last Friday my iron levels are dangerously low. I am now on a Rx iron supplement. I've always struggled with anemia, but it never occurred to me or GP to check my iron levels. If you're a woman, and you feel like absolute dog shit and your doctor can't figure out why, have your iron and electrolytes tested. It'll probably take about 3-4 weeks for me to see any results from the iron supplement, but I can already see a reduction in fluid retention.

In September, I have an appointment with Dr. Le at Integris in OKC. He's a bariatric surgeon. I have gained so much weight from having PCOS and Hypothyroidism that I need to drop a lot of fat fast. I'm pretty healthy - I don't have the normal problems obese people tend to have. I'm not diabetic, don't have sleep apnea, my cholesterol levels are good. I am what they call "healthy fat" which seems like an oxymoron. However, it will improve my chances of getting approved for a sleeve gastrectomy.

I turned 50 last week, and had to endure 3 decades of no one listening to me. I feel I lost so many years of my life and I can never get them back. I hope this post reaches a lot of younger women having issues. Keep looking for a doctor who will listen to you. It sucks we have to hunt for these unicorns, but they do exist. I finally have a good team who actually cares about me.

You have a right to be listened to! You have a right to be heard!

I was asked: Who are my doctors?

Dr. Daniel Brown D.O. Stillwater Physicians Clinic

Dr. Yasuto Taguchi M.D. Taguchi Women's Clinic

Dr. Wynter Kipgen M.D. Stillwater Diabetes & Endocrinology

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awkwardshanandagins · 7 years

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Well, shit, there goes my vision...

One step forward and two steps back. If you were to ask me to sum up my fertility journey in one sentence, that’s what how I would describe it. At least

up until this point. Every time we take a step in the right direction, the universe shoves me backwards. This past week it feels more like 300 steps backwards.

In May of this year, I had my second laparoscopy on my baby maker. I also had a procedure done called “ovarian drilling.” Sounds terrible, right? I figured while they were in there they might as well fuck shit up as much as possible. No but really, it’s about as bad it sounds. It’s a procedure in which they burn little holes into your ovaries. From what our fertility doc told us, this isn’t a commonly used practice but has been shown to help lower testosterone production and help with fertility but only temporarily. My understanding from the little bit I read about it is that us ladies with PCOS develop a hard outer shell around our ovaries in which burning the holes helps break that up. Somehow that hard outer shell makes it even more difficult for women with PCOS to get pregnant. Don’t quote me on this, I’m not a doctor, obviously. Well hopefully my hard outer shell is nice and shattered. I’ll stop using that term now, it’s only making me think of those little easter egg candies that are solid chocolate and have the hard outer shell. My favorite!!! Anyways, not the point.

Now that I’ve probably turned you off those easter egg candies forever, or at least gave you the gift of envisioning my ovaries while eating them, I’ll get back to my what I was saying.

Our plan was to have that surgery and attempt IUI, which is insemination (practically the turkey-baster method), once my doctor gave me the okay, unless we changed our minds to IVF which was quickly happening. My OBGYN is a kind older gentleman who takes his sweet, sweet time doing absolutely everything but I deal with the slowness because he’s the only one I’ve found who listens. As I’m sure so many already know, finding the right doctors is essential but usually super complicated. He told me I’d be good to start trying IUI at six weeks out from surgery. He suggested that once he “does his thing,” the fertility doc quickly start his part of this lovely process.

Depending on who you talk to you’ll get different information on whether laparoscopy actually improves fertility. My OBGYN is certain it will help my chances while my fertility doctor said it will have absolutely no effect whatsoever. My fertility doc actually suggested I don’t have the surgery at all and just go straight to IVF. He said the only reason to get a laparoscopy these days is for pain. Honestly, that was my main concern at this point anyways. I couldn’t go through the next several months of fertility treatments with the pain the endo has caused so I was going ahead with the surgery no matter what he said. This is when he suggested the ovarian drilling. He told me it was an easy procedure and I might as well have it done while my OBGYN is already in there burning the crap out of my insides (my words, not his). He said doing the drilling might give me better success with IUI if that was the route I was choosing.

So flash forward a few weeks and here we are. I see my OBGYN in two days to make sure everything is healed okay. If so, I’d be able to start the process for IUI or IVF. We were getting SO excited thinking within the next couple months we could finally be pregnant after 5+ years of trying. Of course, we know our chances with IUI are about that of a person with no fertility problems getting pregnant any given month but hey that’s a better chance than we’ve ever had before! Plus, we’re not ready to jump straight to IVF. I mean, dear lord have you seen how much that costs?!?!?! I f you aren’t to that point yet, I don’t mean to scare you but holy hell our babies are going to be expensive, ladies!! Also, what if we skip right to IVF and it doesn’t work? That’s our last resort. We have no other option at that point. If IVF doesn’t work, I won’t be carrying our child and that scares the shit out of me. So, we just aren’t there yet. We’ll take our chances on IUI and pray God will come through.

It’s funny how fast things can change. Here we are looking forward to FINALLY starting the process of HOPEFULLY getting pregnant and whammy, life kicks us in the balls.

I was at work last Wednesday, June 21st, just doing my thing, looking forward to a new promotion coming my way (a story for another day) when my vision changed suddenly. You know when you look at the sun for too long and you lose vision and see bright spots? That’s what happened, kind of. I started seeing funny out of my left eye, out of nowhere. One second I could see and the next second I couldn’t. I could see with both eyes open but when I closed my right eye whatever I looked at with my left eye disappeared. I was just missing a chunk of my vision. I could kind of make out things in my peripherals but anytime I would move my focus the dark orb would follow and envelop anything I was trying to look at.

I thought maybe I just looked out my window at the brightness a little too long so I gave it a few minutes to see if it would come back. I don’t even know if that’s a thing, but that was my first thought. It didn’t come back. I spoke to a coworker who told me about her ocular migraines and how what I was experiencing sounded similar to what she experiences. I took some advil thinking it would help this ocular migraine I was probably having and decided to wait it out. She told me for the 20 years she’s had them, they never last more than an hour. Great! I was already over an hour of not seeing but everyone’s different so I assumed it would pass quickly.

I’m a worrier. I make situations in my mind worse than they usually are. Probably from my fear of death which stems from losing my brother at such a young age, but we can psychoanalyze me later. First thought, tumor! I don’t know why, but tumor is my go-to. Weird ringing in my ear? Tumor. Headache? Tumor. Pinky toe hurts? Tumor!!! You see where I’m going with this. My other coworker, who was familiar with my tumor paranoia, assured me it was not a tumor and just a migraine. Deep down, I knew it was only a migraine, but who doesn’t like to be dramatic to spice things up in a boring office job?

It had been at least two hours with no vision so I thought I should make an appointment just in case. I’d rather know for sure it is an ocular migraine to bring my crazy brain some peace of mind. They could fit me in at 3:15 that day. It was only 11:00. Cool, four more hours I could sit around and panic. Just what a Wednesday needs! I sent my boss an email letting her know what was going on. At this point, I was certain she was sick of my shit. I had only been back a week and a half from my two week leave for surgery which I had not planned. Another story for a different time. I missed a lot of work with PCOS and endo (and always feeling like crap but never knowing why) and as understanding as she was, I knew she was probably thinking “dear lord Shanda, what is it this time?”

In talking to my coworker about my almost definite tumor, I remembered my mom had lost her vision in one eye quite a few years back, due to a blood clot. Oh cool, even better, now I have a blood clot on top of my tumor. I called my mom and she told me she had Central Retinal Artery Occlusion. Basically, she had a blood clot that burst and took her vision with it. This happened when she was 40 and she was now 65. Her doctor told her she was incredibly young to have that happen to her as it usually only occurs in people who are 60 or older. The good part, she had no pain. The bad part? Vision loss is permanent. That same coworker heard me on the phone talking (probably closer to shrieking) about a blood clot and IM’d me saying “you’re good.” Thank goodness for her. She keeps me grounded when I spiral out about all my tumors. She was overly confident it was just a migraine.

I got to the eye doctor and they immediately dilated my left eye so I’d be ready for the doctor by the time he was ready for me. My pupils are already huge, which every eye doctor always comments on like it’s some sort of weird compliment. Thank you, I grew them myself! So, when my eyes are dilated, they get enormous. I look like some sort of weird anime character. This time I looked like a weird anime character on drugs since it was only one pupil. It was fun staring at people in the waiting room, winking at them, making them uncomfortable.

When I met with the doctor, he said he originally thought from my symptoms that it was an ocular migraine. Ocular migraines do not last more than two hours usually so he was concerned it was something else. My retinas were still attached which was great news! That was actually my real fear since I’ve always been told I’m at high risk for retinal detachment which can cause permanent vision loss.

After all the tests, he mentioned it was apparent I was missing a big chunk of my vision in my left eye. Thank you, Dr. Obvious. He couldn’t see behind my eye to figure out the problem but expected it to be a Central Retinal Artery Occlusion. I had already forgotten the term from my mom telling it to me earlier. He explained it’s a blood clot and can cause permanent damage. He was referring me to a retina specialist. He told me before I left that if I wake up the next morning and could see, he would assume it was a retinal migraine. Still, he said, retinal migraines normally don’t last over 2 hours but anything is possible. I had hope! I was sure I’d see that next morning.

I tried so hard not to cry in front of him. I’m sure he saw the tears welting up in my eyes so I hurried out. While paying, I realized this was not covered by my eye “insurance” because it was considered medical and I should have gone to Kaiser. Wish they would tell you this shit up front! I had them fax my paperwork to Kaiser which led to a whole other mess of problems.

As soon as I got in the car, I lost it. The thought of permanently losing vision in one eye is awful. I realize things could be so much worse, but still, it felt like a huge loss. I called my husband on the way home and told him through my ugly crying that it might be permanent. In hindsight, I probably shouldn’t have been driving with one eye, crying and talking on the phone. Have no fear! I am an excellent driver and hurt no one that day.

I talked to my mom later that night and asked her again what she had happen to her eye since I couldn’t remember all these damn words. I told her what they thought it was and that I was supposed to see a specialist the following day. She insisted on driving me. Probably a good call.

I wanted to try to go to work that next day so I didn’t piss off my boss but I woke up around 1:45 a.m. and my heart jumped because I remembered the doctor said if I “wake up and can see” it was just a migraine. I shot open my eyes like a creepy horror flick scene and realized I still could not see. I had a total meltdown. My poor husband, trying to sleep, and there I am shaking the whole bed from my convulsion like crying. I didn’t go back to sleep that night. I laid there feeling sorry for myself and grieving my vision loss as I was sure it was never coming back. I called and left a message for my boss that I wouldn’t be in. I didn’t care anymore at that point. I was sad and scared, mostly exhausted, but I just didn’t care if she was mad.

I impatiently waited for 8:30 when the optometrist’s office opened at Kaiser. They said they’d call me first thing in the morning after the eye doctor faxed the paperwork. They didn’t. Of course they didn’t. Why would they? I hate medical offices. They just dilly dally around as if nothing is ever a big deal. This is a big deal! This is a huge fucking deal to me! This affects the rest of my life. I called at 8:40. They didn’t have the paperwork. I immediately called the other doctor who said they already faxed it the night before but would do it again. Why do all doctor’s offices have to function this way? I have not met one person who has ever thought “easy breezy” is a good way to explain their experience with doctor’s offices.

About 30 minutes later I get a call from Kaiser. It was a young woman on the other end. She sounded sweet and innocent almost like a child, but boy did I want to punch that child once we hung up. She said the person who needed to review my file before letting me see a doctor would be in the next day and would contact me. She assured me she was quick and would call me early. Oh thank you, you little asshole! I’ll just sit here another day, without vision, possibly dying from a tumor, and wait for the “fast” lady to review my file. “NO.” I think I shocked her. How did this seem okay in her child like brain? Sudden loss or change of vision is considered an emergency and now they want to make me wait another day. How fucking dare they! They don’t know who they’re messing with, I will scream cry in all their stupid faces. She said there was someone else who could review my file. Why she didn’t just do that in the first place baffles me but it must be that child-like brain of hers that hasn’t fully developed. She calls me back and says I have to get all the same tests I already had done the night before since that doctor’s notes were “vague.” She wouldn’t let me see a specialist because “that’s the doctor’s recommendation ma’am.” I swear to God if it was possible, I would have reached through that phone and throat chopped the shit out of her. Fine. It’s better to see someone than no one at all. The appointment wasn’t until that afternoon. Fun! Another full day of sitting around obsessing about the tumor that was most assuredly taking over my brain.

I called my mom, ugly crying yet again. As you can tell, I was dealing with things very well. She told me she’d still pick me up and take me to that appointment and suggested for me to try to get some rest. Yeah right. A little later, my sister-in-law called me. She’s been a nurse for that past 7+ years. She validated my concerns. She told me this was an emergency and if Kaiser wouldn’t let me see a specialist, she was taking me to the ER. I HATE the ER! They make you sit and wait forever with people coughing and snotting all over themselves and then they just tell you to follow up with your doctor anyways. I told her I would have my mom take me to urgent care.

My mom called me a little later and told me she got in touch with my uncle who is pretty high up in Kaiser. He was angry they were not treating this as an emergency and told her to take me to urgent care. He also got me in touch with the head of the whole damn department who finally ended up getting me in with a specialist. It’s all about who you know. This whole ordeal took hours and I had to call the freaking head of the department in Washington D.C. just to get a damn appointment! Fuck you very much Kaiser.

I saw Dr. Miller that afternoon who, right off the bat, assured me it was very unlikely I had a Central Retinal Artery Occlusion. After all of the testing he informed me he thought I had what is called Optic Neuritis which is where the optic nerve connecting your eye to your brain becomes inflamed and obstructs your vision. Good news is, it’s likely my vision will return in 6-8 weeks. He said he could also treat me with a heavy dose of steroids which would help my vision come back sooner, but the steroids come with a lot of side effects. The last thing my moody-self needs is roid-rage. I felt a heavy weight lifted from my chest. I would get my vision back!!!!! He told me he wanted me to get a MRI just to be sure. The appointment was about over but I figured I’d throw one last question into the mix. How does optic neuritis happen? Does the nerve just randomly inflame? It’s almost as if he was trying to avoid giving me this information. He told me not to worry right up front. Smart! Every time you start a sentence with “don’t worry…BUT,” you know the person is going into full blown panic. Optic neuritis is the first sign of Multiple Sclerosis. The MRI would be able to show if I have lesions on my brain which would indicate MS. He said there’s a chance I don’t have MS but could develop it over time or I could already have it. “Try not to worry.” Sure. You just told a person who always resorts to worst case scenario that she has MS, but I’m sure worry is the last thing she’ll do. Pffft.

My family was all relieved until I threw in the fun news about possible MS. My sister and mom both tried to make me promise not to Google anything until I had the MRI and got the results. Ha! Yeah okay, like that’s going to work. I am a professional Web-MD’er. My mom took me home and I ugly cried one more time.

I waited maybe an hour before I was on Google frantically looking up MS. I’ve always heard the term but never really knew much about the disease. Going through the symptoms was like looking at a description of me the past few years. Everything was making sense. This was me! I already diagnosed myself with MS. I looked over at my husband who had been intently staring at his phone for awhile. He looked up and said “this is you.” I texted my sister to let her know I had in fact Googled the shit out of MS only to find out, she did too. She texted back and said “I think you’ve had this for years.” Eventually, my mom texted and agreed, this all sounded like what I had been dealing with for years.

It feels like in a matter of seconds, my life changed. I know I had no diagnosis yet and there was a very real chance I didn’t have MS, but I was convinced I did. I had to schedule my MRI for the following week on Tuesday. It was only Thursday. What a fun weekend I was going to have! There is no way I wouldn’t worry about something like this even though my doctor told me not to. I thought about it all weekend. I called in Friday as well and cried and Googled all day. Like I said, I was really dealing with this well. I wanted to prepare myself for what I was certain was coming my way.

The good news about MS is it’s completely manageable. I got to a point over the weekend where I was at peace with the idea of having it. At least I would finally have an answer to why I’ve felt like shit for so long. It would assure me that I have not been crazy this whole time and I’m not just a hypochondriac as my family would always joke about. Going to the doctor and constantly being told nothing is wrong with you really has a way of making you look and feel like a crazy person. MS would take that away. I wasn’t a crazy person, I was a person with MS. Not only am I a person with MS, I’m also a person with PCOS and endometriosis. Sheesh, that’s a lot on a body. No wonder I felt like crap all the time. There was nothing for me to do at this point but sit and wait.

I have been an emotional wreck since last Wednesday night. My moods are crazier than ever and I’ve cried so much I really don’t know how there is any fluid left in my body. Tuesday, my husband took me to get the MRI. Thank God I had my doctor prescribe me some anxiety meds. MRIs are really not that much fun. The first ten minutes were the worst. I had the most irrational fear while I was in there. I’m back to thinking I’m a crazy person. I was worried some sort of disaster was occurring while I was in the machine and the lady doing my MRI was no longer there. She left me in this machine which would never stop running and I would be stuck in forever! I thought my head was strapped down and I was certain there was no way for me to escape. She had put a wash cloth over my eyes so I wouldn’t be able to look around and panic, which was helpful, but I also now could not plan my escape route, if in fact the zombie apocalypse was occurring at that exact moment. Luckily, she pulled me out to put dye in my IV. I told her I was worried about being stuck and she informed me I could just wiggle my way out of the machine. I’m so dumb sometimes. Where do I come up with these crazy scenarios? The second half of the MRI was fine. I actually relaxed and let the vibrations soothe me a bit.

Now comes the worst part, waiting. She said my doctor would get the results in 3-5 days! It feels like an eternity and I’m now only on day two. I’m trying to keep my mind and body busy while I wait but have I told you how amazing I am at multitasking? I can be busy and STILL think about all this crap. As of yesterday afternoon, I have even more time on my hands to obsess. My boss sat me down yesterday morning and convinced me to take some time off. She’s seen me around work, tripping, running into walls, crying and just looking like complete death. She knows I’ve been struggling and that I feel terrible both physically and mentally, it’s really not that hard to see. My eyes are sunken and almost always filled with tears and I just stumble around like a drunk person bashing into things and knocking everything over. It’s actually a little complicated to get used to only one eye. I was a clumsy disaster before losing my vision, it has only intensified.

I am thankful she talked me into taking time off. It was something I knew I needed but I wasn’t willing to admit. I’ve always worked really hard at my job and I take pride in my accomplishments. Admitting that I wasn’t up to the task was almost physically painful for me. I know God had a role in this. He saw I needed a break and that I wouldn’t do it myself so he forced me into it. My boss would not have taken no for an answer. Back to FMLA, hopefully. I’m still waiting to hear if it’s approved and I just recently applied for short term disability. This is all very surreal. This is not how I saw my 30th birthday going. Oh did I mention, my birthday was a month and half ago? It’s been awesome. So far I’ve gone to the ER in New Orleans, had surgery, was forced into taking more time off than I expected to, lost my vision in my right eye and now might have MS. Solid start to my thirties.

I have to say, through all of this, I have been extremely blessed. I have the absolute best support system anyone could wish for. My family is amazing. My husband, my parents, my sister…they’ve all been there for me every step of the way. They’ll let me cry on the phone and bitch for as long as I need. They reassure me and lift my spirits consistently. My sister-in-law has been so supportive as well as my close friends. We all need support at certain times in our lives. This is that time in my life.

Needless to say, IUI/IVF has been put on hold. As devastating as it is, there is no way my body can carry a baby right now. So many things are still unknown. We will get there someday. We are determined to have a child and I cannot wait to hold my baby in my arms. Until then, we will wait as patiently as possible and continue to pray.

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lachryphage · 7 years

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so a week ago exactly i started my period

this summer i went off the pill, the only thing preventing me from having unbearable periods. i went off it because it wasn’t working that well anymore, each cycle was more and more painful and i had never been given a reason why my periods were so bad, no attempt at diagnosis was ever made. i was just told i’d grow out of it

i’ve self-diagnosed with endometriosis because all the symptoms fit and i related to people’s stories about their experiences. but it’s a hard thing to diagnose without getting cut open. my doctor listened to me somewhat. we decided i go off the pill to see if my period’s were still bad and get some blood work based on my body’s hormones instead of the pill’s hormones

surprise surprise my periods are still awful

last week i started my third period since going off the pill and dear god it was so horrible. it was like dying.

it came on so fast, i had to leave class and within a half hour i could barely move due to pain but i had to get home somehow and drove through heavy traffic. i tried taking my prescription pain meds in combo with a hot bath -- usually enough to get me sleepy and relaxed. but it didn’t work. and soon i lost control of my bodily functions, vomiting out the nothing in my stomach. honestly i was desperate and terrified. i don’t know how i ever dealt with these before. the pain is indescribable, so bad i can’t even cry because it makes it worse

eventually i took another of my pain meds and some valium i had on hand. and when that didn’t work i smoked some weed (which honestly i hate smoking so you know i was desperate). and that combo forced me unconscious. still in pain, but unable to stay awake.

bless my boyfriend

he was caring for me and was so concerned that he got my doctor to see me the next day and we decided to try and iud. we had looked for endometriosis with a vaginal ultrasound but that rarely shows anything. an iud was the next treatment option anyway because a lot of people with endo respond well to them.

so i was scheduled to have my iud inserted last night

i wasn’t scared, for most people it’s a relatively easy and fast procedure and i have a high pain tolerance.

but my body can’t ever do anything right

first the speculum was uncomfortably large. then they had to re-position my cervix. this isn’t too bad... but then they put the dilator probes in and they’re having trouble with those and in turns out my uterus is tiny, i’m barely big enough to have an iud. but i tell them to press on because yeah it’s painful but i need this. i need something to work and that recent period is looming in my mind and good lord please don’t put me through that again. but they can’t fit the applicator in my cervix so they have to dilate again. and again. and they try to put the applicator in again. and again. and my legs are shaking i can barely hold myself up and the speculum is ripping me open it’s been so long i’m dry and i hurt and FINALLY it goes in.

the procedure took an hour. an entire hour being held open with a metal device and having my uterus repeatedly stabbed.

but the iud didn’t hurt and i said i was fine and i went home and went to bed

but today is awful the iud hurts, it’s been stabbing me all day and my cramps worsen as i write this and i don’t know if it’s bad enough yet to call my doctor.

i panicked today because the procedure was honestly traumatic and i didn’t want to admit that and all of this is terrifying to me. my periods are torture, i can’t live like that, but if this doesn’t work then surgery is looking more and more like a looming inevitability and i wanna be brave but i don’t want them to cut me open

i’m so scared

#very long and about my body #gets kinda graphic i guess #i just wanna scream and cry i'm so scared #i don't want to be in pain anymore #and this is just about my reproductive issues #this doesn't even touch on any of the other shit my body is putting me through #personal shit

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pandymonium001 · 7 years

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My Body is Screwy

I really should update this more, but I don’t feel the need to as much after finding out the causes of my issues. That being said, I am having issues, so here I am. Incoming period-related post in case anyone doesn’t want to read it. I started my period about 2.5 weeks ago. No big deal....I had a feeling it was coming, largely because I was irrationally sad and angry very close together. Generally those are tell-tale signs for me on top of suddenly gaining about 5 lbs in a couple of days. Anyway, prior to getting on birth control, my periods were very heavy but usually only lasted about 7 days. They were painful and miserable, but still ended after a reasonable amount of time. I am of course not counting the hellish 6 weeks with an IUD. I did though once have a 2 week period when I was in middle or high school. I have been bleeding now for 2.5 weeks. I actually thought it was just about done twice, and then it started all over again with the headaches and the pain and the heaviness. I know the PCOS causes shit to be screwy, but this is only the second 2+ week period I’ve had in 24 years, and the only other time it happened I was not on birth control. I currently am on it. I did start taking my pills 2 hours earlier than usual, so I don’t know if that screwed shit up. I can’t imagine that would be enough to cause a 2+ week period when I didn’t have abnormally long ones while not treating the PCOS. Maybe I’m wrong, though. I’m probably overthinking shit. I do plan to call my doctor’s office about it Tuesday. If she tells me not to worry about it without coming it, I will probably email my Endo at Mayo since she was handling my Metformin and all of that. I’m just starting to get a bit concerned, especially since I’ve now been through 2 boxes of Tampons (I think one was a 40 pack and the other was a 20 pack), and I haven’t used them in a few days since it was light and acting like it was going to stop until tonight. In other news, I have an injection in my lower back in a few weeks. In spite of the fever I ran the last time, I am very much looking forward to it. I have only felt my sacroiliac joint once since the last injection, and the back pain has been killing me, especially with that damn hurricane. I assume my back pain was so severe that time because the pressure is what triggers the pain, and hurricanes have insane amounts of it. I just know I was in bed for days knocked out on Flexeril because I was in so much pain I was constantly on the verge of crying and being sick. It was awful. And yet I know I got off easy compared to the other people affected by it. Didn’t make it any less shitty, though. Pain was also made worse because I had to go to PA for work for a week. i actually did surprisingly well with that all things considered. I was dying after the traveling the first day. In particular, I asked the people at the gate for my flight if someone could help me get my bag in the overhead bin because I had back pain, and I was told no for “safety reasons.” I was then made to check the rolling back that had my laptop in it, and I had to carry the laptop, making my pain far worse than it needed to be. They said the overhead bins were completely full, but when I got to my seat, the one over my aisle was completely empty. Having to carry that bag along with the anger I felt from that caused me so much pain that by the time I got to my hotel room, it felt like my back was going to break. So that was fun. They had us sit for a while at work because they’re presentation-happy, but I mainly got through that by getting up and down a lot and listening while I stood. So I made it through that even though I was dying. Someone at my table commented that she could tell I was having issues because I couldn’t keep still after a while. She didn’t mean it in a crappy way, though..it was more like an observation when I said I was dying from the pain. Apparently one of my co-workers has been to Mayo. I’m not going to post her stuff here because that would be shitty of me, but she said that was the only place that was able to help her, and she was very happy with her experience. it was interesting meeting someone else who had been there. In general I enjoyed getting to meet everyone at the office, but I am very grateful I can work from home. It seems to be a really good, understanding company. They were very accommodating of my gluten issues, and several of them contacted me after I got home to be sure the I got home safely with the hurricane. I think it’ll end up being really good for me in the long run because I can still advance my career while working from home. It’s been a long time since I’ve had a sleepless night over worrying about health-crap. I certainly don’t miss it. I’m sure it’s probably nothing, but I’m also kind of paranoid after everything else. I do need to sleep, though.

#PCOS #menorrhagia #period #menstrual cycle #menstruation #irregular period #excessive period #long period #period won't stop #chronic pain #chronic sickness #chronic illness #back pain #work #american airlines

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rootindiahealthcare · 5 years

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When I was told by my Doctor that I had Endometriosis. Moreover, Specialist suggested to Stop Practicing Google Medicine'.

Sheela Nauriyal's gut feeling about what was behind her horrifying pain turned out to be right. Told us By Sheela Nauriyal, on February 06, 2019 This article is a frame out for Health-related concern, Misdiagnosed, featuring tales from real females who have had their medical symptoms dismissed or incorrectly diagnosed. I always respected myself to be in comparatively good health. I had annual checkups, managed a healthy diet, and tried to exercise. Overall, I was happy to be completely normal. True, I had very disturbing and lengthy periods, along with bad cramps. But so did my mother. So does my own daughter. I thought that’s exactly how it is.

Then in 2012, after two earlier healthy pregnancies, I suffered a miscarriage during my four months pregnant. Soon after, I sprang having severe back and leg pain. At first, I criticized it on getting older or the evidence that, as a lawyer, I sat so much throughout the day. When the discomfort didn’t go away. It appeared likely that it was due to sciatica or a pinched nervure. After a methodical pelvic exam and ultrasound. My ob-gyn finds out. So I visit the chiropractor for the opinion.

african female medical worker comforting a sick patient in hospital Mysterious, worsening pain But despite substantial therapy appointments and Pilates classes, the pain never completely evacuated up. Not until 2015 did I recognize that it worsened during & after my period. I also began experiencing other symptoms like frequent constipation, urinary tract infections, and high BP (blood pressure). Even sex became unpleasant. I felt so messy. If nothing unusual was conferring up on my exams and tests, then what was causing my pain?

My ob-gyn recommended that I consult doctors who specialized in uterine issues. But I didn’t do so right beyond. I couldn't assume that anything I had could be that serious. Plus, by this duration, I’d seen to live with the two weeks on, two weeks off the pain. (It required precisely timed Ibuprofen, which dulled the pain so I could work but didn't eliminate it.)

It was hard to take leaves from my demanding job. Not to introduce, find a good specialist who not only accept my insurance but was acquiring new patients. I anticipated 14 months to see a specialist. In hindsight, that was a significant mistake. "Stop practicing Google medicine" In 2016, while studying my symptoms online, I came transversely endometriosis, a disorder in which uterine tissue develops outside the uterus. It seemed like a possible reason for my symptoms, yet neither of the 2 specialists. I noticed that year mentioned it. When I did, I exhibited like I was irritating them. In fact, one of the consultants told me to “quit practicing Google medicine.” Although both said they could manage my symptoms with various medications, they blamed the 20 or so extra pounds I was hauling at the time as the cause. I did try proceeding on birth control pills, which they had advised. But, I had to stop because it made me throw up all the extent and gave me severe headaches.

I remember stepping out of the second specialist’s clinic on a scorching August day. I had to walk many blocks to the train station, and as I walked, I tried to concoct my frustration. I discovered I’d had it with these so-called “specialists.” No more meetings with doctors who didn’t hear to me. I’d specially deal with my two weeks on, two weeks off pain period until menopause. But the pain kept becoming worse. In 2017 my ob-gyn, knowing how exasperated I was, recommended I have one more ultrasound test. I have a habit of resembling at techs’ faces when I get tests. They were not discuss to say anything, but don’t have the best fire-stirrer faces. As the technician prodded my left side, I saw her whole face upset. I found out later that she could n’t discover my left ovary.

An abdominal ultrasound was planned, as well as a CT-Scan. The results explained that I had a condition called hydronephrosis It was so severe that my kidney had stopped functioning. I was astonished. Scared. Upset. And I was at trouble about what to do, since physicians didn’t know the cause.

I went back to Google for explanations. This time, I found an unknown blog, where a woman reported how her kidney had been affected by endometriosis. I remembered I had to have the situation, too. I began exploring for an endometriosis specialist in my local areas. The right diagnosis—and extensive treatment After three months, I visited with MD Specialist, a New Delhi-based gyne laparoscopic surgeon.

He'd already taken the time to understand all my medical files—and he was terrified that no one recognized what he said were classic endometriosis symptoms, such as pain and back-pain during sex time. Besides endometriosis, I owned adenomyosis (similar to endo, it's when the uterine partition grows into the muscle of the uterus). The doctor also medicated me with a frozen pelvis, a severe difficulty of endometriosis that provoked my pelvic organs to adhere to my bones. In addition to extraction surgery , my uterus, my fallopian and both my ovaries, tubes would all need to be separated. The surgery took the time of nine hours. It involved not just a Doctor but also a colorectal specialist and urologist. Following the procedure, they find that my kidneys was very much infected. And swollen to four times its natural size. They had no alternative but to take it out as well too.

No one welcomes great after this type of surgery, but honestly, I was so happy. Since my pain went away. I strongly remember sitting in the waiting room before the surgery, signing paperwork, and being incapable to put weight on my left side because of the extreme pain shooting down my leg. Once my operation done. I became achy and tired, but that pain on the left side of my body had vanished. Recovery was not so easy. Doctor recommended for full bed rest to me. I took 3 months disability leaves from my company. I was feeling blessed. I certainly had was worth it. Putting dismissive doctors on notice I stand out to open up about my experience. So that other females to not wait for years for such treatment. Entertain to your body. observe and notice your symptoms. Do your analysis and come to your doctors anticipated. We must to put medical professionals on warning that they cannot recommence to ignore millions of females who have endometriosis. I want insurance companies to listen to this, too, and start covering extraction surgeries, which are currently out of pocket and very costly. I don't want anyone else to drop major organs to endo.

If I talk about Doctor visits and Medicine coverage which supported me allot by OPD Health Plan. As per my research, I find only a single company namely as "Root India Healthcare" which covered me after knowing my existing disease although there is no waiting period for requesting the claims. Additionally, easy claim and quick settlement are the unique and best attractions of the plan. Tax Saving and one plan theme are super attractive. Seeming back, I didn’t live—I survived between pain series—for seven years. Now, I sense I have a life again. If you have such experience, about being misdiagnosed, email us at [email protected] Read the full article

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sandycwehmeyer · 6 years

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Endometriosis Awareness Month - Why It's Important For Every Woman

Can you imagine being sick for 10 years?

A decade of symptoms, pain, frustration, and a deep burning intuition that something is wrong. Yet despite all the evidence that you are indeed sick, you never receive a diagnosis or treatment options to overcome the illness. Can you imagine?

I can. Along with 176 million other women world-wide.

Welcome to Endometriosis.

The disease takes an average of 10 years to medically diagnose, yet it affects 1 in 10 women around the world. The number of women with Endometriosis is suspected to be much larger (possibly every 3 out of 10 women), however Endometriosis can only be diagnosed via surgery causing much of the population to suffer without answers.

March is Endometriosis Awareness month and we must call attention to this disease that not only affects female reproductive health, but also has mental, emotional, and physical consequences.

Endometriosis doesn’t kill you. It may make you feel like dying due to the debilitating nature of the disease, but you won’t in fact die. Therefore, Endo receives very little funding and acknowledgment as compared to other female health concerns.

That is why Endometriosis Awareness Month is so important. It’s an opportunity for women to not only learn about the warning signs, but also to start conversations. Conversations on how to manage the disease, how to talk to your partner/spouse/ loved one about your experience and what they can do to help, what current treatments are working, and most importantly… which ones are not.

I suffered for 13 years before my first surgery to confirm what my gynecologist had long suspected…

Stage four severe endometriosis not only growing on my Fallopian tubes, uterus, and ovaries, but also growing on my stomach, kidneys, bowels, and abdominal wall.

I was lucky. Not because of my diagnosis, but because I had a mother and grandmother who had also suffered with the disease. They were open, honest, never judgmental, and created a community where talking about sexual health wasn’t taboo – just normal.

Not everyone has that.

Endometriosis Awareness Month is about creating that community. A community where we learn and provide support to those women who need it most.

Because the typical diagnosis can take an average of ten years (ten years too long if you ask me), it’s important to start syncing up NOW with communities of women sharing about their endometriosis, menstruation, and female issues.

Why? These communities of women often share symptoms and health issues that you might be experiencing too… or even worse, over-looking.

Being informed and well-versed with reproductive health may help you work with your doctor to receive a diagnosis and solution much quicker.

Endometriosis can affect the whole body. While the excruciating pain and excessive menstrual bleeding can be traumatic, it is the debilitating nature of the disease that often adds to the suffering. Back pain, IBS, pelvic floor issues, excess inflammation, intense hormonal fluctuations, pain during intimacy, food sensitivities to dairy, sugar, and gluten, brain fog, exhaustion, abdominal pain, bloat, abdominal swelling, weight gain, weight loss, and an inability to participate in normal life activities. These are all common symptoms in women with Endometriosis. Most of us can relate to each one of those symptoms.

There are currently no cures to the disease. Many physicians prescribe pharmaceutical treatments to help quell the symptoms. However, these treatments have been criticized by the Endo Community for doing more harm than good and causing many other negative side effects for patients.

If you are suffering from any of the mentioned symptoms, there are some recommended steps to do immediately:

First - Start by tracking your monthly menstrual experiences. Endometriosis symptoms can happen outside your normal period week, and it is important to track what you’re experiencing so you can communicate effectively with your physician.

Second- Seek out products that may help with some of the issues. For example, if you’re experiencing pain during intimacy, use an all-natural lubricant such as Chiavaye to help ease friction and reduce skin irritation. You’ll want to look for a pure, high-quality formula that nourishes and hydrates your most delicate skin.

Third - Take a look at your diet and make note of any foods that seem to cause bloating, IBS, constipation, loose stools, stomach aches, or make you feel tired or irritated. There is a whole diet system dedicated to Endometriosis and inflammation from food plays a big role. While you may not be officially diagnosed yet, adjusting your food intake may improve symptoms.

Women helping women – it’s a beautiful thing!

To take advantage of Endometriosis Awareness Month, join communities and share resources with your fellow Endo Sisters. Even if you haven’t been surgically diagnosed yet, it’s incredibly important to start learning about the support that’s available.endo

Here are some of my favorite endo resources:

The Endometriosis Foundation of America celebrating 10 years of providing women with resources, medical recommendations, blog posts, and support for dealing with Endometriosis. It’s a great first stop for any women dealing with this disease.

The Endometriosis Coalition (@theendo.co) is an awesome Instagram page to follow. The women who founded the organization all have Endometriosis and they do a great job talking about a plethora of issues including diet, treatment, symptoms, and management.

Jessica Murnane created Know Your Endo based on her debilitating experience with the disease. Her holistic approach provides tons of resources on diet, education, and ways to fight back. She also created One Part Plant where you can find amazing (endo friendly) diets, a podcast, and plant-based cooking info.

Dr. Brianne Grogan, PT, DPT offers a free YouTube channel loaded with videos dedicated to pelvic floor issues, pain management, exercises, and yoga techniques created especially for women. Check out her channel – FemFusionFitness.

The most important takeaway from Endometriosis Awareness Month is to tell your doctor right away if you’re having any issues. Listen to your intuition and seek the help you need.

We are always available to talk and listen – so reach out to [email protected] if you have any questions.

If you found this article helpful, share it with a friend!

Live. Laugh. Lube.

source https://chiavaye.com/blogs/news/endometriosis-awareness-month-why-you-should-care from Chiavaye Coconut Oil Lubricant https://chiavaye.blogspot.com/2019/03/endometriosis-awareness-month-why-its.html

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brianmbaily · 6 years

Text

Endometriosis Awareness Month - Why It's Important For Every Woman

Can you imagine being sick for 10 years?

I can. Along with 176 million other women world-wide.

Welcome to Endometriosis.

March is Endometriosis Awareness month and we must call attention to this disease that not only affects female reproductive health, but also has mental, emotional, and physical consequences.

I suffered for 13 years before my first surgery to confirm what my gynecologist had long suspected…

Stage four severe endometriosis not only growing on my Fallopian tubes, uterus, and ovaries, but also growing on my stomach, kidneys, bowels, and abdominal wall.

Not everyone has that.

Endometriosis Awareness Month is about creating that community. A community where we learn and provide support to those women who need it most.

Why? These communities of women often share symptoms and health issues that you might be experiencing too… or even worse, over-looking.

Being informed and well-versed with reproductive health may help you work with your doctor to receive a diagnosis and solution much quicker.

If you are suffering from any of the mentioned symptoms, there are some recommended steps to do immediately:

Women helping women – it’s a beautiful thing!

Here are some of my favorite endo resources:

The most important takeaway from Endometriosis Awareness Month is to tell your doctor right away if you’re having any issues. Listen to your intuition and seek the help you need.

We are always available to talk and listen – so reach out to [email protected] if you have any questions.

If you found this article helpful, share it with a friend!

Live. Laugh. Lube.

from https://chiavaye.com/blogs/news/endometriosis-awareness-month-why-you-should-care

from Chiavaye Coconut Oil Lubricant - Blog http://chiavaye.weebly.com/blog/endometriosis-awareness-month-why-its-important-for-every-woman

0 notes

aprildlux · 6 years

Text

Endometriosis Awareness Month - Why It's Important For Every Woman

Can you imagine being sick for 10 years?

I can. Along with 176 million other women world-wide.

Welcome to Endometriosis.

March is Endometriosis Awareness month and we must call attention to this disease that not only affects female reproductive health, but also has mental, emotional, and physical consequences.

I suffered for 13 years before my first surgery to confirm what my gynecologist had long suspected…

Stage four severe endometriosis not only growing on my Fallopian tubes, uterus, and ovaries, but also growing on my stomach, kidneys, bowels, and abdominal wall.

Not everyone has that.

Endometriosis Awareness Month is about creating that community. A community where we learn and provide support to those women who need it most.

Why? These communities of women often share symptoms and health issues that you might be experiencing too… or even worse, over-looking.

Being informed and well-versed with reproductive health may help you work with your doctor to receive a diagnosis and solution much quicker.

If you are suffering from any of the mentioned symptoms, there are some recommended steps to do immediately:

Women helping women – it’s a beautiful thing!

Here are some of my favorite endo resources:

The most important takeaway from Endometriosis Awareness Month is to tell your doctor right away if you’re having any issues. Listen to your intuition and seek the help you need.

We are always available to talk and listen – so reach out to [email protected] if you have any questions.

If you found this article helpful, share it with a friend!

Live. Laugh. Lube.

from Chiavaye - Chiavaye Blog https://chiavaye.com/blogs/news/endometriosis-awareness-month-why-you-should-care from Chiavaye Coconut Oil Lubricant https://chiavaye.tumblr.com/post/183566760036

0 notes

chiavaye · 6 years

Text

Endometriosis Awareness Month - Why It's Important For Every Woman

Can you imagine being sick for 10 years?

I can. Along with 176 million other women world-wide.

Welcome to Endometriosis.

March is Endometriosis Awareness month and we must call attention to this disease that not only affects female reproductive health, but also has mental, emotional, and physical consequences.

I suffered for 13 years before my first surgery to confirm what my gynecologist had long suspected…

Stage four severe endometriosis not only growing on my Fallopian tubes, uterus, and ovaries, but also growing on my stomach, kidneys, bowels, and abdominal wall.

Not everyone has that.

Endometriosis Awareness Month is about creating that community. A community where we learn and provide support to those women who need it most.

Why? These communities of women often share symptoms and health issues that you might be experiencing too… or even worse, over-looking.

Being informed and well-versed with reproductive health may help you work with your doctor to receive a diagnosis and solution much quicker.

If you are suffering from any of the mentioned symptoms, there are some recommended steps to do immediately:

Women helping women – it’s a beautiful thing!

Here are some of my favorite endo resources:

The most important takeaway from Endometriosis Awareness Month is to tell your doctor right away if you’re having any issues. Listen to your intuition and seek the help you need.

We are always available to talk and listen – so reach out to [email protected] if you have any questions.

If you found this article helpful, share it with a friend!

Live. Laugh. Lube.

from Chiavaye - Chiavaye Blog https://chiavaye.com/blogs/news/endometriosis-awareness-month-why-you-should-care

0 notes

mammahealth · 7 years

Text

My thyroid journey

After several years of feeling “not myself” and several blood tests were done that were all NORMAL, I finally found an amazing doctor who tested my TSH levels and determined that my thyroid was low. he put me on Cytomel 25mg once a day and six months later retested me to only find my thyroid had dropped. he doubled my dose and just recently was told that it had dropped again. I am going today to see him and possibly be put on an additional medication. I am very concerned as to why my test results keep dropping. I don’t really understand that. In 2011 I had a biopsy done on my thyroid because they found 3 large nodules that turned out to be benign, however, my doctor suggested that I revisit my endo. No one has put a name or label on anything and I am trying not to get scared, but I am unsure what I am dealing with.

Confused

Hello, I have hashimotos. I am aware that I have had this disease for approx 19 years. I never took it seriously because all my doctors didn’t. But as of the past 6 years and have 3 more children I have not taken it so lightly. I have been nothing but a roller coaster of a mess. But again the doctors don’t seem to take the disease or me seriously. So I get to wake up everyday in complete pain both physically and mentally. It takes everything out of me to be a mother. I’m not who I used to be and it’s slowly killing my marriage and relationships with others. I have recently switched docs…again! And I’m praying that the switch from synthroid to nature-thyroid is going to help me.

Living with Hashimoto

Hi…I’m a hashimoto pacient…I’ve been living with this disease for a decade now even if I’m still very young…I’m 25…I had 10 miserable years running between hospitals doctors and chemists…I’m not able to get out from this frustrating chain of brain fog tiredness and depression. …I need to get my own life back on the road. ..I want to study…enjoy life….have babies…and be happy. ..I want a happy end….

My doctor once sent a report back to my family doctor saying I had “psychological problems” and was a hypochondriac.

Now:

– I have an amazing doctor – I’m taking Erfa Thyroid – I’m on a paleo diet

Never felt better.

There is better care out there. It might take some time to find it, but it exists, and I hope it will start to be the rule instead of the exception.

The Battle Goes On

It all began in 2003, my mom suggested that I see a gyno now that I was 18 and at college. So I listened to my mother, a nurse. At my appointment the gyno examined my lymph nodes and thyroid. She showed me in a mirror that I had a lump in my thyroid and that it was most likely thyroid cancer. WoW! Way to drop all of that on an 18 yr old. Diagnosing my problem wasn’t hard. I saw an endocrinologist immediately and he did a worthless needle biopsy… he made my neck spurt blood! The tumors were growing rapidly and needed to be removed ASAP because if they didn’t become cancerous they would grow large enough to suffocate me.

They removed 90% because they weren’t sure if they were cancerous yet or not. The path traveled after surgery has been tiring and defeating. I was put on medication and my levels were within the “normal” range (very low end). Since my thyroid was removed I am sick all the time, weight gain, hair loss, and depression. My endocrinologist would not alter my dosages so we set out to find a new doctor, but no other doctor would touch my dosage because I had already been to a specialist. Then one doctor took me off my thyroid meds altogether and put me on anti-depressants…. I got the pleasure of trying several brands and dosages before I gave up on them. It is now 10 years later and I am still struggling to find a doctor to put me back on thyroid meds.

Abby’s Story

I began doing my own research a few months back when my doctor told me my levels were normal on the specific dose he gave me and so I “didn’t need to come back for a year”. I’ve been told I have Thyroiditis. I kept having symptoms and yet he claimed my TSH levels were normal and wanted to put me on an antidepressant. I discovered a couple of physicians that opened my eyes to Hashimotos and told similar stories of patients who gave their case closed because of normal test results and yet suffer with symptoms. I will be seeing another dr in the next few weeks to follow up and hopefully get some more answers. One thing that seems to really help is being on a gluten-free diet and from what I understand it has helped several other thyroid sufferers. If anyone is interested, the book that has helped me tremendously is called ‘The Thyroid Solution’ by Dr. Ridha Arem, M.D. He runs a practice in the Texas Medical Center. Amazing book. Also Dr. David Clark has several you tube videos that are so helpful and practices in North Carolina. Thank you for creating this website. It’s about time people started listening 😉

The end of Western medicine

The year I aggressively pursued my diagnosis, I saw my primary care doctor five times. I saw a Rheumatologist who ruled out Lupus and RA. An Endocrinologist diagnosed Hashimoto’s, but six weeks later told me that my lingering symptoms were not thyroid related. I went back to the Rheumatologist, who ruled out other autoimmune disorders. I then saw a Neurologist who ordered an MRI and ruled out MS.

When I returned to my primary doctor, she told me I had reached the end of Western medicine. I was still sick.

Having exhausted insurance-covered medical care, I paid out of pocket to see a functional medicine doctor. He ran a full thyroid panel and tested my cortisol levels, vitamin levels, and other hormones. He helped me refine the Autoimmune Protocol diet to help my body heal and recommended supplements that allowed me to reverse my symptoms. Within a month, I was on the road to healing.

Why do we have to travel past the end of Western medicine to feel better?

The post My thyroid journey appeared first on Mamma Health.

from Mamma Health https://mammahealth.com/my-thyroid-journey/

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therisenson · 7 years

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07092017

Alright I’m going to do this because I need to process and reflect if I’m going to get through this. And also Jesus, I’m going to need some of Him, too. I see you, Lord. For anyone who takes the time to read/pray for me, I am truly so thankful for you. I'm not the best at sharing when I’m going through difficult times; I like to wait until everything is over so I can cheerfully praise the Lord and kind of gloat/boast over how I got out of it (and of course it’s never me who gets over it, it’s the Lord’s grace that carries me through it)...but I recently listened to a John Piper sermon where he goes over Psalm 42 (the “as a deer pants for streams of water, so my soul pants for you” one) and points out that the psalmist doesn’t end with a resolution. He cries out to the Lord, in pain, in trouble - yet the psalmist doesn’t record that the Lord rescues him yet. He’s still in the midst of darkness and suffering - and it’s completely okay. Still, he is praising the Lord.

I really want to do the same.

I have a really hard time telling whether I’m depressed or not and I guess I’m going to need a professional’s opinion to gauge my mental well-being. I also sadly have this desire to be depressed (or more so - I hope whatever this is, is depression) because then at least I’d have some semblance of an excuse for how crappy I’ve been these past few weeks. Anyway, there has been this headache that has not given me relief, at any point in time, even with painkillers, for two weeks and two days. At first I thought I was just severely exhausted - thus I took a day off work to sleep (I swear this headache gets worse with excessive sleep...). Then I had that moment of paranoia where I thought I had a brain tumor. Then I reasoned it was allergies after a visit to my endo. And then finally a visit with my primary had me considering that it could possibly be depression and/or anxiety causing my headache (that coupled with a few online quizzes that all noted I was moderately to severely depressed but who can attest to the accuracy of online quizzes? I know they don’t equate to a medical diagnoses. Thus my wariness and confusion...but can you see how this makes me worry?)

Anyhow...how did my primary come to this conclusion? He simply asked if there was anything else going on and when I opened my mouth to answer, no words came out, only dry heaves...and then shortly after, shameful sobbing (mind you - in a room with the doctor, his medical scribe...and an intern...I have the worst luck). He mentions therapy - I tell him I actually just signed up the day before (with PRN) and he says we’ll see how that goes and to follow up in six weeks. He says, “you’re free to go sweetie,” and I make my way to the front desk so distraught and flustered that I decide I cannot wait for the person in front of me to check out/schedule the next appointment - I just bolt for the exit and desperately try to dry my eyes in the elevator. It sucks. My headache isn’t going to go away. There is nothing he can give me to take away the pressure in my head and more concerning - I feel there is nothing that can help me take away this building anxiety in my heart.

Nights are incredibly hard. I dread going to sleep. What is it about being alone in bed at night that makes us so vulnerable, so susceptible to all these anxious thoughts, so weak and desperate that we listen to Satan’s lies? But, what’s even more frustrating for me is I CANNOT TELL WHAT IN THE WORLD SETS ME OFF. I can’t figure out if there’s any triggers. I just go to bed, turn off the lights, and ten seconds later, my heart fills with sadness. With overwhelming, heart breaking sadness and then I can no longer lie down, I have to sit up because I cannot stand the pressure in my chest and suddenly I am heaving and sobbing and I cannot stop. I have to cry - anywhere from 20 minutes to a good hour before I exhaust myself and then I have to wait another 20 minutes to an hour to regain normal breathing patterns (my nose is way stuffed at this point) and not break down due to another panic attack. It absolutely sucks - it makes my headache ten times worse and I wake up super puffy and droopy eyed, utterly drained.

In the midst of my tears, I hardly have enough breathe to pray to the Lord. I can’t even think straight. The only thing I’m aware of is how much pain I’m in and how utterly helpless I feel. I am not sober minded. I am not in my right mind. If I can catch a moment of clear headedness, I try to pray. “Help me,” is my most uttered prayer - yet I feel the Lord doesn’t answer...ehhh let’s say 90% of the time. Sometimes, He gives me strength (I think? or I just get mad tired and can’t cry anymore). But, most of the time, He’s silent.

The mornings are better, sort of. I wake up tired but hopeful. The sun is out. I can leave my bed. I have people to see. But, then when I realize I have people to see, I start getting tired again. To give you a glimpse into the thoughts that ruin me: “Am I going to be able to interact with them as I normally do? Do I have the energy? Should I just not try too hard lest I burn myself out because Lord knows I do that A LOT? But, then what if I’m just being overdramatic and I really can handle it and then I’ll just bum others out unnecessarily? But, would I even be acting with love in my heart because if I do all things but have no love then it’s all for naught? But, just because I can’t do it from an abundant overflow of my heart I shouldn’t do it? Should I tell other people I need help (oh God, I want to scream to the world HELP ME HELP ME HELP ME) but what can they do? Do they even care enough to pray for me? Will they look at me differently or will they feel awkward around me? What would I do if someone told me they were sad...I’d prob say I’d pray for them, do it for a day and then never do it again and then feel super guilty when I see them...well no point in making them feel that way then. But, I seriously need help isn’t that what community/friends are for? Yeah, but how much faith do you have in them? (I guess little, huh) And O God...what if they feel really bad for me and just keep checking up on me because they feel bad...that’s pity that I actually would not enjoy it would make me feel extremely uncomfortable because wow it just makes a person feel real weak and like there’s something wrong with them, you know? I really feel so weird telling them and oh well as long as Jesus knows He’ll help me. But, what if Jesus will only help me if I be brave and tell people...? Does it even work that way? O my God, what in the world am I supposed to do I feel so stuck.” And thus I spiral into darker thoughts and I just am so done. I don’t know what to do anymore.

WELL. All that to say - God does give me moments of clear headedness. Church. Sermons. Fellowship. I taste little pockets of joy and it’s like the taste is duller but it’s there. It’s definitely there. I don’t want to lose the fight (as Julia was sharing today during service, with tears running down her face and voice quivering but dang she was courageous AF) so whenever I remember, I tell the Lord: “Help me. Strengthen me. Uplift me with your righteous right hand because I will lose unless you help me and I want to win, Lord, I want to win so bad. For your glory. For your glory.”

Things I have found that help me:

- exercise in the morning. It makes my head pound like MAD and I feel like utter death but one hour later, I feel the better for it.

- picking one or two things that I absolutely will commit to getting done that day and dragging myself out of my funk to do it and then mentally celebrating such little victory (ex: BUY GROCERIES WOMAN LEST YOU STARVE) because honestly it is so hard to do even the little things now.

- writing. picking up my pen and journal and pouring out my anxious thoughts on paper as if draining the ink in my pen will simultaneously drain the poisonous black thoughts in my heart.

- and hopefully therapy as of next next monday! excited to see how specifically christian counseling works.

I know Jesus is here in the midst of it all. Like Julia experienced - it is just very hard to hear His voice (if I could ever say I did...) and it is extremely hard to seek His voice. I’m honestly a little scared. I know thoughts can spiral and I’ve had suicidal thoughts before but I always reasoned that I’m extremely optimistic and determined to the core to be happy so I would never do anything to myself. Thoughts are thoughts. But, holy crap the fact that I tried to cut myself I feel like is very concerning and I know that I’m not in the best of places to gauge what mental state I’m at so I’m very scared of how I’m actually doing. What I do know is that I’m very arrogant and prideful and way too confident in my own abilities to handle things...thus probably why it’s come to this...this...ughhh whatever this is. Pastor would deem it the wilderness.

Anyhow...I guess this is a very not put together, not so silent but kind of veiled, cry for help. Internet...help me. (nono, it should be:) Jesus, help me.

Psalm 42:11

Why are you so downcast, O my soul? Why so disturbed within me? Put your hope in God, for I will yet praise him, my Savior and my God.

#faith #suffering #help #depression...?#anxiety #Jesus #Godisgood

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childrencryinncoffee-blog · 7 years

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When Baby is Akin to Sin…We’re Not Educated in Responding to This

“Motherhood is quite beautiful, but the beautiful quiet in motherhood is where the pain tests you the most.”

I wrote this this morning, as a status on my blog’s Facebook page.

I’ve never had such a beautiful sentence makes such sense for me. I get surprised by my mind sometimes, when throughout all the chaos and racing thoughts, a profound thought just hits me, stops me and I thoroughly feel it throughout my whole body.

I’ve been thinking about my pregnancy, labour and delivery with Ivy a lot lately. She’s nearly 3 months old and I still haven’t done anything about my trauma I experienced. This pregnancy was far from easy. It was a shock and surprise pregnancy. It was a result of both failed birth control (once again) and a failed Plan B over-the-counter medication. I was 31, already a mother to 4 kids, struggling to find my footing, having my most recent baby nearly 4 years before. And yet, I fully accepted the double blue lines on the test when I look at the stick 3 minutes after pissing on it.

I found out early, as I am very attuned to my body; I have to be, as birth control failure was the result of all my other children. My oldest was the failure of the Low-Dose Pill I was put on for hormone regulation thanks to Endometriosis. My second child was the result of a failed Depo-shot therapy. My third child was with the NuVa Ring. My 4th child was with the Mirena IUD, not even 7 months after insertion. This is why I was, and am, still adamant to having (at least) a partial Hysterectomy. Besides the Endo, the PCOS and the Fibroids that make my months and periods a living hell. I’m the lucky one who bleeds through both a Super+ sized tampon AND an overnight sized pad in less than 2 hours, sometimes less than an hour. I’ve learned to NEVER have any light colored pants, let alone white panties.

I was not in a good place, both figuratively and literally, when I found out I was expecting number 5. My excitement of having a new baby quickly wore off when I realized just how shitty our situation was. We live in a 4 bedroom rental, with a shit-head as a “landlord”. It’s me, my husband, our 4 kids and at the time; my little sister, her two daughters, my mother and little brother all living with us–on Derrick’s paycheck. And even though, at the time, Derrick was bringing in around $1000-$1200 per week, we were struggling and now we were adding another little person to the party. I began to rapid cycle, and I’m not normally a rapid-cycler, but my hormones were so out of whack, I couldn’t keep up mentally.

I don’t know what’s worse; actually physically throwing up with morning sickness during the first trimester early on, OR always on the verge of throwing up and gagging at EVERYTHING. I know what was worse–the fact that smoking a cigarette was the only thing that stopped the nausea. Mind you, this nausea and smoking was BEFORE I took the test and I assumed I just ate something bad, so I continued smoking–until I took the test and then, I’ll be honest, that morning, after I took the test and it was positive, Derrick was at work and I didn’t tell anyone and I continued to smoke the rest of that day. Part of me registered there was a baby in there, but another part of me didn’t want to believe it and the smoking kept the vomit at bay, for at least a little while.

By September, I was such a psychotic, hormonal, raving bitch, that I chased EVERYONE away. My sister and her kids went back to her husband and son in Las Vegas, my brother found an apartment, and my mother and her boyfriend moved in with my grandparents. But then it was just me. Pregnant, sad, lonely AF, angry me, with 4 kids and a husband who worked 6, sometimes 7 days a week, just so we could stay afloat.

I was angry. I was lonely. I was sad. I was a wreck. I was suicidal.

I had no support.

At least I thought I had no support. I never reached out to my mom because our relationship had been turbulent the last month or so she was at my house. I was pissed off at my little sister, because she moved out and left us with a $660 electric bill and hasn’t sent back one red cent to pay us back for living here, rent free, eating, using our wifi and electricity, Netflix account, Hulu account and flat screens, hulling up on our couch for months. It even caused a huge rift between me and Derrick, exacerbating my depression, when he’d throw it in my face, that’d we would have already been in a much better place for this baby, had I NOT been the one to “take in all the strays” of the family and offer OUR roof over their heads. And now, now I get his frustration.

During the lowest part of my Antepartum Depression I wrote a suicide note…an email…to Derrick while he was at work.

Probably not the smartest thing to do when your husband is hundreds of miles away, navigating a huge truck on the hellish Los Angeles freeways.

I was at a breaking point. Seriously, no one can TRULY understand just how lonely depression can make you, unless you’ve lived it. I saw no point in living. I wasn’t getting along with my mom, my sister, my brothers didn’t understand so they kept their distance and that distance was FELT and it hurt, my kids were constantly fighting, arguing and not listening to me, my grandparents are from another generation so they didn’t comprehend boundaries and depression so they were no help. I had (have) no friends. And I completely stopped going to therapy, group and visiting my Psychiatrist. I gave up.

I found my (original) OB/GYN August 1 and had my first visit on August 10th. I chose him because my sister-in-law was pregnant too and he was her doctor and I went to her first appointment with her and I liked him (and the female doctor with him, and here I thought I’d be getting them as a team too. Boy was I wrong). My first appointment was just quick formalities and Derrick was there. Blood pressure reading, weight, height, blood work and numerous forms to fill out about me and my previous pregnancies, miscarriages, deliveries, etc. I was automatically deemed “high risk” and was sent to a second doctor because I was an “older” mother with numerous health issues; overweight, hypertension, fibroids, Endo, PCOS, progesterone allergy, asthma…and mental health “issues”. Not to mention Derrick’s heart condition and family history of cancer.

I saw this OB a total of 3 times. The first meeting mentioned above. A second appointment in September to go over everything from August. And one more time in early October, where I poured my heart out to him, expressing my concern and worry about my depression; how I’d become recluse and stopped therapy, group and seeing my psychiatrist BUT I was STILL continuing my Latuda, secretly praying this would help with my depression. But my OB demanded, to Derrick (he didn’t even acknowledge me laying on the examination bed, tears streaming) that I stop my psychiatric medications because I wasn’t “depressed” I was just “sad” and I didn’t need medications for that. He told Derrick that I was “choosing” to be sad and that if I chose to be happy, I’d be happy.

I was in utter disbelief and my depression hit tenfold what it was before.

I cancelled my 26th week appointment with him.

The nurses called numerous times and left voicemails demanding I call and reschedule immediately or he’d give my place to another mother.

I laid in bed, crying, listening to the voicemails, not ready to reschedule yet, deleting the voicemails, turning over and crying myself to sleep. Over and over again, for days.

My 28th week I received a certified letter in the mail, from my OB. He had dropped me as a patient.

I spent my 28th and 29th week in bed.

Around the end of my 29th week, I fell. I ended up in the hospital. I told the head nurse, who, luckily, was MY nurse, that I didn’t have an OB and she took time out of her busy schedule to hand-write a list of high-risk OB’s from here to Corona to Hemet to San Bernardino, who took my insurance and I cried happy tears when I hugged her and thanked her for looking out for me.

I spent the following Monday calling every name on that list. No takers. I called my insurance company and asked them for a list. I called everyone on their list. No takers. I Googled every OB and called EVERY single OB within 25 miles in each direction; in ALL counties within the Inland Empire. And still, not one taker.

No one wanted me as a patient, who was an “older” patient, at 30 weeks already AND high-risk. I was too much of a liability.

My depression kicked my ass even harder and this time, I had guilt added to it because I blamed myself for my original OB dropping me as a patient, because, maybe, maybe he was right. Maybe I was CHOOSING to be depressed. And now, here I was 33 weeks along with a baby and I had no idea what was happening with her. That was the only solace I had to hold on to–I found out around 30 weeks she was a she, because I had to pay out of pocket, to go to one of those 4D Ultrasound techs, because I HAD to make sure she was still alive. Mind you, I couldn’t careless if I died, but I wanted to make sure the baby was okay.

And when I had that ultrasound done, even though it wasn’t a medical one, I was ECSTATIC when I saw her up on that projector screen; all her fingers, all her toes, long limbs, fully developed lungs and a hummingbird heart that was fluttering about. I had something to hold on to. I wasn’t just getting fat and throwing up for the hell of it, there was a little person in there.

Early March I slipped and fell again, landing on the side of my belly and really hurting my wrist and knee. I went back to the hospital and that’s where I met my attending OB. She ordered ALL the tests I missed during my pregnancy and I had ultrasounds and everything and she sat there and listened to my cries and how I lost my original OB and she patted my hand and said those magical words: “You’re my patient now.”

I was (what I assumed to be) 36, nearly 37 weeks when I walked into her office for my first appointment. I didn’t even last 5 minutes. She told me that I needed to head to the hospital; my liver was failing to sustain me and the baby because my blood pressure was way too high and I looked like hell.

I didn’t think I’d be having a baby, I thought I was only going to the hospital to be monitored, medicated and sent home on bed rest until her (what I assumed to be) EDD of April 5th, 2017.

Nope. I was stuck to a bed. I WAS medicated. With 6 different kinds of medication; to lower my blood pressure, to hydrate me, to replenish her amnio fluid, to thin my cervix and kick start labour. I was having a baby, that day, at 37 weeks. I freaked. I was stuck in bed for 3 days. I had a catheter, of which I HATE, and that totally played into my PTSD too because I do not like inanimate objects forced into my neither region, NOR do I like that un-numbed PAIN included–it’s fucking traumatic and I’m hella sensitive down there, after having my area burned with a cigarette when I was 9.

SO I was forced into labor early and I laboured for 3 whole days before I started pushing and it was just before my epidural, that my doctor informed me that I was truly more around 34 weeks and 5 or 6 days along in my pregnancy–so I began to freak the fuck out again.

Once my epidural kicked in, it kicked in a little too well and my stats nearly flat-lined. I remember becoming super lethargic, sleepy and weak. My blood pressure was what Derrick’s was when he was dying of kidney failure with the Rhabdomyolisis. My brain was freaking out, but my body was barely moving. My eyes were open and I was able to see everything happening. It went from me in the bed, Derrick to my right, the Anesthesiologist at the foot of my bed, and the nurse to my left overlooking my vitals…to the room becoming over-crowded with at least 6, 7, or 8 nurses, the Anesthesiologist, his supervisor, the hospital’s head officials and a couple other people who introduced themselves, but I was so out of it. The last thing I remember saying to Derrick before I blacked out was “I don’t wanna die.”

I woke up 3 hours later. My epidural had completely worn off and holy-fucking-hell did I FEEL everything. My body wasn’t ready. My brain wasn’t ready. I wasn’t ready. But they were making this baby come. I cervix was being checked, with the catheter still inside me, every 5 minutes and I was in PAIN. I was already freaking out with the trauma at this point, I couldn’t stop crying. And then my rapes (yes rapeS) came flooding back into my mind because THE sole male nurse just walked in and announced he was going to check my cervix for dilation and I FREAKED LOUDLY, but I couldn’t get it out, I couldn’t verbalize WHY I was freaking out, I felt 9 years old all over again. I couldn’t fight back. I just laid there, gripping painfully to the bed’s arm rests, sobbing and screaming “No, no no no no no no” over and over again, looking at Derrick to save me from this and I screamed when the man’s hands went inside me, but I couldn’t respond to Derrick when he asked me what was wrong.

How does one lay there, who’s body is TRYING it’s damnedest to birth a baby, while your brain is SCREAMING at you to make it stop, while visions of my rapists’ play through my mind over and over and over again; being pinned down, in pain, searing pain, while he forces his huge hands deep inside me and I can’t kick, I can’t fight, I have to literally lay there and take it because there’s a baby in the balance.

And it was so hard to bond with her once she came out, because this male nurse was still inside my delivery room and I’m sitting there, numb, but shaking and all I see and hear is Leon’s, Joey’s and Eli’s voices. All I FEEL is their hands on me. And I’m trying so hard to find the joy in the moment because my daughter was there, she was my reward for not giving up, when all I wanted to do was give up and I wasted my Golden Hour in the L&D room.

And my husband is gunna read this.

And he, even to this day, has no idea that this was the narrative that was playing in my head that day. The amount of panic attacks I was having wasn’t because I was birthing a child. It was because the whole time I was relating the pain and trauma to the trauma I experienced as a child and young teenager.

And it’s not like I look at Ivy and think about the trauma and rape every single time–but there are times, that my brain is a complete and utter asshole and says, Hey you know what, birthing Ivy was like being molested and raped, wasn’t it, and it fucks me over for the day and I have trouble holding onto her, feeding her, bonding with her and all I want to do is run away, drink or smoke an entire pack of cigarettes.

But how do I say this to my husband? “Here, take your daughter, she’s exacerbating my PTSD and if I don’t numb myself RIGHT NOW I’m gunna freak out and lord knows that outcome”?

We don’t talk about my triggers much, mostly because I feel they’re MY responsibility and that’s what I have a psychiatrist and therapist for. But there are times I wish I could articulate it in my brain, well enough, to articulate it to my husband, that when I need breaks of overwhelment from the baby, isn’t BECAUSE of the baby all the time, it’s because my brain is a motherfucker and I’m dying inside and I need a fucking minute.

I desperately NEED postpartum support, but I am SO scared of reaching out for it, because how do you open up to a group of strangers and equate your labour and delivery to molestation and rape?

So I sit here, nearly 13 weeks postpartum and I still haven’t found my footing. I don’t have a tribe. And I am medicated again, but probably not as medicated as I should be…but I am determined to breastfeed my daughter.

But at what cost to me?

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type2diabetestreatments-blog · 7 years

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"Golden Rules" for Living with Type 1 Diabetes

New Post has been published on http://type2diabetestreatment.net/diabetes-mellitus/golden-rules-for-living-with-type-1-diabetes/

"Golden Rules" for Living with Type 1 Diabetes

One of the best resources for learning about diabetes and connecting with other PWDs (people with diabetes) locally can be summed up in five letters: TCOYD.

That would be Taking Control of Your Diabetes, the national educational conference series founded by endocrinologist and longtime type 1 Dr. Steven Edelman in San Diego. He's not only a super-knowledgeable clinician and researcher, but a really funny, passionate guy who infuses these day-long seminars with energy and inspiration. Seriously, everything I need to know about diabetes I learned at TCOYD.

For the past dozen years, I've had the privilege of speaking at my local Santa Clara event, that brings in about 1,000 patients for a full day of talks, panels, activities, a product expo and a banquet lunch -- all at the affordable price tag of just $20 per person!

This year, I was honored to be on a very cool opening panel for the Type 1 Track led by another awesome accomplished endo + type 1, Dr. Jeremy Pettus (who shared his smarts on alcohol and diabetes with us here).

Our panel was titled, "Golden Rules for Type 1s: Tips for Living Well with Diabetes," and included Dr. Bruce Buckingham of Stanford, Dr. Christine Ferrara of UCSF, Adam Brown of diaTribe, and Yours Truly from the 'Mine.

I think the audience really appreciated that we weren't trying to act as if we had all the answers, but rather just talking turkey about the realities of the hour-by-hour challenges of T1D. I thought you all might enjoy hearing the answers I prepared for this session, which aren't exactly "golden rules" but my own personal best practices, such as they are...

TCOYD) Do you have an overarching philosophy with your approach to managing your diabetes?

Amy) Do just enough to stay in decent control while STAYING SANE.

Has this philosophy changed over time?

It’s only grown stronger. Not having regular meltdowns over diabetes issues is an ongoing effort.

What would you say is the most important thing that has made a difference in your type 1 life and helped you keep on track? Inner strength/approach? A healthcare provider? Family members? Your job?

The support of my family for sure, and to a large extent exercise -- which makes me feel good physically and psychologically.

I also think it's super important to connect with other PWDs for sanity checks (TCOYD is excellent for that!)

What therapy or equipment has made the biggest difference in your life (CGM, pump, rapid insulin)?

I would say the OmniPod tubeless pump and Dexcom CGM. I love being able to pump with no dangling cannula, and the CGM has been a huge game-changer in just being constantly aware of what's happening in my body. I've also been using Afrezza inhaled insulin for the past year and have found the biggest advantage of that is having less complexity with IOB (insulin on board).

As you know, injected insulin sticks around in your system for four hours, whereas Afrezza is in and out in 1.5 hours. That means way less chance of insulin stacking, going low during exercise, nighttime lows, and more.

How important, or not, has a healthcare provider been in your success?

From my POV, the priority is that your HCP does NOT annoy / judge / misunderstand you / dismiss your concerns. You need to be comfortable and feel respected with that person! I have been fortunate to find such a doctor, although I must admit I don't see her all that often.

When everything goes to shit, what is usually the reason? Travel? Life stress? Change in diet? And what do you do to get back on track?

Travel and lack of sleep are huge for me; they usually go hand-in-hand. For that, I do my best to eat as low-carb as possible and check often, plus correct often.

Laziness / procrastination are also big factors. There are lots of times when my pump is beeping that it's time for a pod change or my CGM is alarming high, and I just don't want to deal with it immediately. I don't want to have to drop what I'm doing. But the results are almost always bad. I chalk this one up to being human.

Finally, my period does wonky things to my BG levels that are hard to predict. For the Ladies reading this: am I right? Hormonal cycles have a strong effect on blood sugar, an issue that's not discussed or explored enough.

How do you deal with exercise? Does it help your BGs or make them worse?

It’s constant trial and error. I have some set Temp Basals that I use regularly for spin class, aerobics, kick boxing, hiking and other workouts, but they’re far from fool-proof. To me, the most important thing is not to have to eat a bunch of empty calories I’m not hungry for -- in other words, to avoid going low at all costs, which often means I end up high after exercise and have to spend several hours at least chasing those highs. Come to think of it, I could use some improvement in this area.

What's your approach to food? Do you eat whatever the hell you want and just bolus for it, or do you avoid certain foods? Do you have any additional dietary restrictions?

I’m also gluten-intolerant, which is a pain in the rear, but it helps keep me very low-carb. I try to eat as low-carb as possible without making myself miserable -- meaning I try to do "just a taste" of the carby foods I desire most (which for me is mainly tortilla chips and granola bars).

Overall, I just eat a lot of protein and veggies, mostly salads. Thank God I actually like kale 🙂

How involved, or not, is your significant other in your diabetes? Do you want them more or less involved? If you could tell them one thing to change, what would that be?

My partner is very supportive, but not at all involved in the daily nitty-gritty. That's usually how I like it.

If I could change one thing, I guess I wish that instead of peering over my shoulder every once in a while to ask something like, "175, wow isn't that kind of high?," he would periodically ask a broader question, like, “Hey, how’s it going with your diabetes?” and then just listen to whatever I feel like sharing -- without necessarily trying to "fix it."

What do you LOVE to eat when you are low?

Raisins! I loved to eat lots of dried fruit before I got diagnosed, and had a hard time giving that up. Now I buy copious amounts of those little red snack boxes of raisins. Did you know the mini-boxes come in chocolate-covered and yogurt-covered varieties now too? Yum!

I stash them in my car, purse, nightstand, kitchen, suitcase, etc.

I stock up so much that one day when I had a bunch of six-packs piled in the backseat of my car, I picked up my daughter and her little friend asked, "Does your mom sell raisins?!"

Tell us a time that you have used type 1 to your advantage?

This is a hard one to admit, but I've definitely used it to get to the front of a buffet line. When I get really hungry, it feels like a low, even if my BG isn't dipping too badly. If you tell people you have type 1 diabetes and need to eat now, they're usually accommodating.

I've also had my doctor write me a letter to avoid jury duty. She actually encouraged me to get out of it if possible, because it really is tough if you get stuck there for weeks on end -- in terms of being able to eat right, exercise, etc. (Before you get judgy, know that many PWDs have gone this route.)

What does "being in control" mean to you? Is it an A1C? No hypos? Time in range?

I would say an A1C of 7.4 or less WITHOUT FREQUENT HYPOS.

My good friend Dr. Richard Jackson of Joslin Diabetes Center always encouraged me to think of "good control" this way -- not as pressure for ever-lower A1Cs, but maintaining a decent level without frequent lows, which shows that you are actually staying "in range" most of the time.

Tell us about your approach to complications. If you have them, how do you deal with them? If you don't, how often do they enter your mind?

I don’t have any yet, knock on wood! But I do think about them often – especially for eyes and feet, which are my “weak spots.” Gotta get those screenings regularly!

Give us a parting piece of advice to others on how to make life with type 1 better?

I’d return to my overarching philosophy: “Do just enough to stay in decent control while STAYING SANE.”

Sanity in this case means allowing yourself slip-ups, and taking time for family, friends and activities you enjoy (and occasional food splurges) WITHOUT FEELINGS OF GUILT.

So Dear Readers, got any "golden rules" of your own to share?

Disclaimer: Content created by the Diabetes Mine team. For more details click here.

Disclaimer

This content is created for Diabetes Mine, a consumer health blog focused on the diabetes community. The content is not medically reviewed and doesn't adhere to Healthline's editorial guidelines. For more information about Healthline's partnership with Diabetes Mine, please click here.

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