Lose Weight, Feel Great? Not exactly!
Lose Weight, Feel Great? Not exactly! The woman in the photo looks and feels fabulous and I am happy for her! I am patiently waiting as I continue to work hard for the day that I can do that with my pants! I will be taking before and after photos, but I will wait until I reach my goal weight before I reveal those hard to reveal photos of my neglected body!
Limited mobility thanks to HS
The purpose of this post is to create more awareness about my skin condition, Hidradenitis Suppurativa, or HS for short. My mobility is limited at times like when I had a flare up in my groin last week. I had to pick my kids up from school in my truck instead of walking last week because I had a double cyst flare up. They can happen at any time and they don’t usually give a fair warning, they just “pop up.”
The cyst was on my thigh but very close to where my thigh and labia meet. I also had a cyst on my labia, so they were rubbing as I walked. Each step was painful because the cyst fills with fluid as the day goes on. Luckily it finally decided to burst when I got out of the truck after picking up the kids on Friday and gave me instant relief.
It was probably due to the fact that I had bend my leg in order to hoist my short legged frame into my truck! Bending my leg that far stretched the skin just enough to “pop” the cyst and allow the fluid to escape. Ever get a blister on the bottom of your foot and it hurts like the dickens until it bursts and the fluid leaks out? Same concept and same feeling of relief with my cysts.
It hurts, but somehow no one believes me!
Okay, I just re-read that and I kind of glossed over what it’s really like. Let me try again, it’s incredibly painful, it’s chronic and constant pain. I have developed a high threshold for pain thanks to my disease. I won’t say that a higher pain tolerance is necessarily a good thing to have either because when I talk about pain, no one takes me seriously.
I’m having “cervical pain” – why don’t you believe me?!?
When I gave birth to my son last year, the anesthesiology resident who administered my epidural didn’t believe me when I told him I was having “cervical pain” and that the baby would be born within minutes because I could tell I was getting ready to start pushing. He kept asking me where the pain was located and when I kept insisting it was in my cervix. The conversation went like this:
AR (Anesthesiology Resident) – “Okay tell me where you are feeling pain because I know inserted the epidural correctly. You shouldn’t feel a thing.”
Me – “In the cervix, I can feel it opening up and stretching wide. It really hurts and this baby will born within 20 minutes.”
AR – “Well you shouldn’t be feeling any pain at all, just give it a few minutes. Or would you rather I take it out and find another spot along your back?”
Me – I frantically shake my head no because I refuse to give birth while this guy is messing around in my back! Tears are streaming down my face as I let out a pathetic little whimper.
The nurse looks concerned and my husband looks as though he’s ready to punch the guy in the throat or tear his throat out. My husband’s green eyes looked really crazy scary for a minute and now I am no longer concerned for myself or our baby but more for the AR because I believe that my husband really just might kill him.
AR – “I’ve never heard of anyone having cervical pain before. You should be feeling some light pressure but not pain. I can always take the epidural out and insert the needle in (somewhere I can’t remember) and you should feel relief a few minutes afterwards. Can you describe exactly where it’s hurting again?”
Me – “In the CERVIX! You know – the spot between the vagina and the uterus?!? C-E-R-V-I-X!!” I am thinking to myself – The area where the baby will pass through shortly? The one that is steadily dilating because I have a pitocin drip forcing my uterus to contract! I can definitely feel the pain down there you A**hole!!
He looked puzzled and looked at me as if I was speaking an foreign language. Never mind that I had already done this very same thing twice before with my other two babies!!
I have three kids who all had to be induced into labor since no one wanted to leave the comfy confines of my womb! Of course our youngest flew the coup early since I developed severe pre-eclampsia at 34 weeks of pregnancy. The NICU nurses said he was like an under baked cookie, still very gooey on the inside. Whatever that means…I am still not sure exactly what she meant but it doesn’t matter now since he’s perfectly healthy today!
Can you stop pushing for just a minute? – Seriously?!?!?
He and the nurse exited stage left but I yelled at nurse as she closed the door to not go very far because I was about to push at any minute. Did I mention that I had to stop pushing with all 3 kids for different reasons? No joke, I was asked to stop each and every time!
I was told to stop pushing with the first born because my doctor wasn’t in the building yet. He was giving a lecture and was hauling his little tail to my delivery room so the nurse asked if I could stop for a few minutes? I was thinking to myself – “The kid’s head is crowning out of my vagina, but sure, I can hang out here for a few because I have nothing better to do.”
I was told to stop pushing the second time because the umbilical cord was wrapped around my daughter’s neck, twice. That was a very good reason to stop pushing so I didn’t complain as I patiently waited. All I wanted to hear was her healthy little cry so I stopped pushing and waited while holding my breath and when she cried, I cried and it’s been an incredible ride ever since!
I had to stop pushing when the NICU team decided to take forever to show up to my delivery room. No one believed me when I told them that they needed to haul a** because I knew what my body was doing. I could still feel everything since the epidural was useless and I kept telling everyone to hurry up because he was coming out even if I stopped pushing.
I waited as long as I could then one last big contraction pushed him right out. My OB/GYN resident who delivered baby D was a little perturbed with waiting too but maybe she was biased since we had worked closely together just months prior in the OB/GYB clinic.
How ironic to wait on all three of my kids, right? It’s more ironic to me because of my impatient personality! My kids would all decide to show up late and then other people make me wait to give birth! Tsk, tsk! I don’t have time to play around, people! This momma handles her business!! Haha!
The epidural didn’t work as it was actually too late when I finally got it and when I hit the “transition” period of labor – the most painful part of the contractions, right before pushing baby out, I whimpered pathetically and shed a few tears.
When baby D was crowning minutes later, the AR popped his head back in to see if I needed my epidural adjusted and totally freaked out when he realized the baby was already born. He said he never saw anyone go from 6cm to fully dilated and pushing in just a five minute span! I answered back, “Well, you have now!”
I experience pain politely, but I am thinking it over now!
So that’s the story of my life now, every time I experience pain and should be screaming my head off or acting like a crazy person, I simply shed a tear, breathe through it and politely tell someone that I’m in pain. I have since learned that I probably should react a little more if I do need pain management so someone will take me seriously. Maybe I should be completely inconsolable and throw a hissy fit…nah…that just isn’t my style!
But I digress and back to my HS presently at hand! I also have an incredibly terrible case of HS in my left armpit and it makes full mobility of my left arm slightly impossible. I have been more diligent in trying to stretch it, massage my lymph nodes to move the fluid away from my cysts and decrease inflammation and strengthen the muscles in my arm to prevent atrophy.
I decided to check in with my plastic surgeon for a consultation to have it all removed and she has since relocated to Houston. So I am back to square one of finding someone to help me manage my disease without a specialist for miles. The nearest is in Houston but I am not willing to go so far and pay so much for an out-of-network visit. The joys of a chronic disease…yay!
Lose Weight, Feel Great? Not exactly!
All joking aside – I’ve lost 9 pounds since I began 3 weeks ago and I should be feeling great, which I do, but I also feel like total crap. I don’t know what I have exactly, but I have been sick for the past week.
I want to say it’s just good old Texas allergies because I’ve been without fever this whole time but my throat is sore, my body aches and I am dead tired. This is not uncommon for me during allergy season but getting over an illness with an autoimmune disease is hell.
It takes me twice as long to recover from a simple cold or any other illness. My husband and kids bounce back in no time at all and I linger on and on for days and days. I won’t say that it’s unfair, I won’t whine either, this is simply to spread awareness about my struggles with HS. But I wish I could bounce back from an illness as fast as 100% healthy individuals do!
I remember calling in sick when I worked at the hospital. You would think if you are contagious, ill or living with a chronic disease that employers would be more understanding, right? Especially since everyone is working in healthcare at a major hospital and we are trying to prevent the spread of disease and infection, or are we?
I can’t tell you the number of times I caught flack from my supervisors for calling in and how they would tell me that they just take some ibuprofen and come to work anyway. Doctors would have runny noses and wet, phlegmy coughs and still see patients in the clinic. Residents would load up on symptom dissolving medications because they didn’t want to miss the opportunity to do a scheduled procedure on a patient.
If you think hospitals are clean, think again! They are the very worst places for the spread of disease and infection. I never let anyone touch me who hasn’t first washed their hands in front of me or visibly used a hand sanitizer. I don’t care if they get upset, I know what’s floating around the hospital and I can’t afford to catch those super bugs clinging to their lab coats, stethoscopes and dirty hands!
I hate selfies and body shots
I hate taking pictures of myself, I hate selfies and I most definitely hate full body shots. It was incredibly hard and super scary to post that picture above of my armpit. I know HS is not something that I can control because it’s an autoimmune disease but the shame and guilt inflicted upon patients with HS is no laughing matter.
I was diagnosed with it when I turned 24 and the doctors who were treating me kept insisting it was herpes. They would test me for herpes over and over again and I filed a complaint and the higher up doctor correctly diagnosed me with HS. I was being seen at a military hospital since my ex-husband was actively serving in the Army at the time. They kept telling me to be honest and that I owed it to myself to disclose any “extra” marital activities I might have engaged in.
I felt ashamed, as many HS patients do and I hated my body and what this disease was doing to it. Over the next 4 years I would have 2 major surgeries and suffer more physical pain in my life. The disease progressed to both sides of my groin and under my breasts. I also had to struggle with maintaining the proper perspective about my disease and to fight off depression yet again. I will write about that later, when I am ready but for now just know that it was not easy.
The first plastic surgeon that I saw refused to do any surgery at all and thought it was better to leave me in constant pain. The next one thought I was a nut job since I had battled depression years before and was scared to prescribe pain medication to me but he did the surgery anyway. He completely removed sections of my skin in the folds of my groin and then sewed it all back together again.
Bye-bye camel toe and fat apron
I had a ginormous camel toe that was hard to cover up and drove me nuts before my first surgery. I had wished over and over again that someone would just trim it down and cut it off! My wish came finally and unexpectedly came true! I also had a fat apron around the bottom band of my belly since giving birth to my son just 6 months earlier so I got a 3-for-1 deal in this surgery.
So much skin had to be removed because of the disease so they pulled everything up from the thigh region and down from my lower abdomen to close the gap and that pulled my hanging camel toe up and made it normal again! It also took away my fat apron because all of the skin was pulled down. I called it my mini-tuck and I could not stop staring at my crotch and mid-section naked in front of the mirror for the longest time! I even pinched myself once just to make sure I was awake and not dreaming! Corny – I know but I was ecstatic to lose the giant camel toe!
Why did you cut chunks out of me?!?
The next surgery I needed would scare the beejeebees out of me. I had no idea that so much skin would be missing when I woke up after surgery, it was like a horror movie. Being on a morphine pain pump didn’t help either because I was in-and-out of reality those first few days but managing my pain was difficult since so much skin was exposed. Think about it, they just pissed off a gazillion nerve endings when they burned and scraped all of that skin off. I endured the most excruciating pain but it was worth it.
They took a CO2 laser and killed some of the top layer of my skin and shaved off other areas. Hidradenitis Suppurativa affects the apocrine sweat glands under the surface of the skin. It’s like body acne and the glands become over-active and form fluid filled cysts, deep tracks and tunnels under the skin.
This plastic surgeon felt the best treatment was to remove the top layer of affected skin and let it scar over. BEST treatment for me to date! I am hoping to do the same with my left armpit, but I am struggling to find a surgeon who is willing to do it.
It was incredibly scary when I saw my skin for the first time because chunks of my skin was missing – literally. Both sides of my breasts looked like someone took an ice cream scoop and scooped out holes in my skin and the underside of my breasts were cut up and hacked. It looked like a crazy murderer had tried to hack me up but was unsuccessful in finishing his butchery of my body!
I have a weird looking circular scar on the topside of my muff because I had a cyst removed so now it’s hairless because scars that deep won’t grow hair. I also had a huge section of skin on my left thigh removed, about the size of the palm of my hand. My skin started to heal and grow to the wound dressing so I had to have it ripped off and that was incredibly painful! I didn’t have morphine for that experience so my skin was literally ripped from my body and all I could do was scream in pain.
I try to find the humor in it all, especially when I am in excruciating pain or feeling down about it all. I stocked up on lady’s deodorant and joked with my husband that I would only need half the razors and deodorant since only one arm has a working armpit! No need to waste money there!
Slowing down but not stopping
I tell you the good, the bad, the funny and the ugly in hopes that you can be inspired and encouraged. We are all struggling so you are never alone and we all have our battles to fight. My HS slowed me down this past week but I am not stopping. I have walked, stretched and done some strengthening when I was able and I continued on with my healthy meals. I have lost 9 pounds and I have more energy, more motivation and more desire to see more results!
I wish I could say that it feels great every step of the way, that it’s easy and that it’s painless but I would be lying. It’s been hard, I’ve felt like crap and I’ve been pushing through the pain but I am still making progress and seeing results. I tell my kids all the time – progress is progress and that’s all that matters. Keep going, keep pushing, keep trying and never, ever give up on your dreams!
“The journey of a thousand miles begins with one step.” – Lao Tzu
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