The Plight of My Wedding Dresses Part One
Ever watched your body change significantly in such a short amount of time that it was almost impossible for your mind to catch up? Yeah, me too.
Welcome to Part One - trigger warning content describes and shows surgical incisions, blood, needles, and other matter that may be unnerving.
Let me set the stage. James and I planned and had our wedding in 2022. Probably from Thanksgiving 2021 until about August 2022, I watched my weight actively go from 165 lbs to 195 lbs. Likely more at the height of it, but I wasn’t stepping on the scale during that time.
I learned 3 things during that time:
The weight gain (and loss) signaled an onset of old new (iykyk) problems with my #HidradenitisSuppurativa diagnosis.
The weight gain (and loss) as well as my surgery forced me to rethink what I had envisioned (and purchased) for my wedding day.
The weight gain (and loss) as well as my surgery occurred during the start of one of the happiest and most fulfilling times in my life.
Some boundaries here because this is a safe space -
I write with a heavy dose of satire, run-on sentences, and the frequent use of ‘ubiquitous you’. I am sharing my personal experiences in an effort to destigmatize advocating for yourself in your #wellnessjourney
My experiences should not be taken as medical advice and/or a medical diagnosis - please see a medical professional if you believe you need too to obtain medical advice and/or medical diagnostics
If you decide to take it upon yourself to do more research, that’s great, but please remember, I benefitted greatly from #earlyintervention and by having parents with means - therefore what you may read and/or see will not be indicative of my state or anyone else’s for that matter
Lastly, this is incredibly personal for me - for that matter, I’m disabling comments. Words have incredible meaning both positive and negative. If you have praise, please share, promote, tag etc., if you wish to negate - piss off, that energy isn’t welcome.
So, here we go.
“The weight gain signaled an onset of ‘old new problems’ with my Hidradentis”
Here is the definition of Hidradenitis Suppurativa according to the Genetics and Rare Diseases Information Center, “Hidradenitis Suppurativa (HS) is a chronic skin disease which causes painful, boil-like lumps that form under the skin and often secrete pus and blood. HS occurs most often in areas where skin rubs together, such as the armpits, groin, and under the breasts.… As the sores heal, they may leave hardened, rope-like scars or form tunnels under the skin (called sinus tracks) that can be disfiguring and make movement difficult.”
I’ve had my diagnosis for almost 2 full decades. I’m 31 for reference, and I’ve lived with this disease for ⅔ of my life. When I turn 40, I will have lived with the disease longer than without. I received the correct diagnosis when I was in middle school. I have two of the three areas, groin, and underarms, as regularly affected areas.
When I was diagnosed, my doctor wasted no time implementing #earlyinterventions. This included extensive surgeries to remove established tracts and laser protocols to help the skin and surrounding tissue heal. I was in a wheelchair with stitches, pressure bandages, the whole kit, and kaboodle on and off for most of the 7th and 8th grades. And again, my junior and senior years of high school (minus the wheelchair). There were other decisions made in conjunction with these surgeries, like adding in routine medications and dropping out of sports that would contribute to symptomology. Mentally, I was forced to understand that my life would change irrevocably. Whether I was aware of it then or not, all of these decisions helped me curate what my life would be like even if I wasn’t mature enough to realize it.
My doctor has been my doctor for those 2 decades. She is the genius behind my treatment plans, surgeries, medications, etc. The continuity in my care and the compassion of her and her staff made the diagnosis a little easier to manage. I’ve grown up in her office, there's a familiarity and comfort I feel with them. I am never afraid to receive care, and/or text her if I know something is wrong. There’s no loathing these appointments like one may loathe the dentist or the GP.
Her clinical decisions and care made a world of a difference in my mobility and quality of life. Most folks with #hs don’t receive the correct diagnosis until later in life, and at that point, treatment options can be limited, and mobility is likely impacted. I am incredibly grateful now for the early diagnosis and intervention. I am fortunate enough because of said intervention to not only know when something is wrong or off but also communicate it. I have very little loss of mobility and the ability to live my life day to day in a very manageable amount of pain. I’m not embarrassed by my diagnosis, no matter how much dignity the symptomology and preferred bodily locations may strip from me.
HS is incredibly fickle, in my opinion, and difficult to treat. From experience (with most forms of treatment for the disease clinically covered and not), treatment can manage symptomology, but it’s not enough. I had to learn trial by fire what my entire wellness routine and lifestyle should be. Everything had to be curated to support mitigating factors that increased symptomology - for me, those factors are #stress, #anxiety, #weight, #hormones, and #nutrition.
As a financially independent adult, I have (almost) complete control over all the factors that trigger my #hs. I am an active person, I work out 4 to 5 times a week doing a mixture of yoga and weight lifting, or walking my pittie, Lou. I value my nutrition. James and I are cognizant of eating locally grown foods and sourcing our protein from local farms. We patron restaurants that share these values. You will never see eat something made from a box, or that has ingredients with complex chemical names
I take roughly 8 medications daily, have 2 subcutaneous injections weekly, 2 monthly, and on average have about, 4 δ-Aminolevulinic acid laser treatments annually. Yep, that's me getting said laser treatment, a** up getting treatment during covid. No, it's not a day at the spa. It's an awful, persistent, mix of burning, itching, and heat that you can't do anything about for 20 min per treatment area. But hey, my eyelashes and eyebrows look great. It’s a full medication schedule to manage most of my triggers.
And, it will never be enough.
I will always have to mitigate, calibrate and pivot to maintain the best possible quality of life physically, mentally, emotionally, and financially. Finance is a big one, it is expensive to be well in this country. My medical history shows the amount of care that is necessary for my well-being. Shocker, it ain’t all covered by insurance. If it is, better buck up because your health savings account vendor provider may then think all the stuff that’s necessary for you to be well isn’t medically necessary under IRS tax guidelines. You need to be well-educated, well-connected, and well-off to have this disease. #LifewithHS is expensive and it is #resilient. Think 6 months of low symptomology might turn into 8 months or even a year? Think again.
Now enough background, on to the wedding dress drama. My symptomology spiked greatly at the end of 2021 going into 2022. My underarms had a resurgence of lesions that tracted very quickly because of scar tissue in the area from previous surgeries. During this time I also had a pretty acute weight gain of almost 45lbs. If there’s one thing I know, being fat doesn’t help when you have #HS. It’s not a #fatphobic comment, it’s a fact of #livingwithHS. Being overweight with #HS is like a one-way ticket straight to somewhere I don’t want to go. An intersection of exponential chronic pain, increased lack of mobility, hormone dysregulation, risk of diabetes, and high blood pressure. Literally all the things.
If it’s not obvious, I’ll call it out - being active when symptoms are high is almost impossible. It’s incredibly painful and exhausting. Weight gain almost always follows any bouts of extreme symptomology for me. After going through a pretty brutal δ-Aminolevulinic acid regimen to try to calm down my symptomology, something I've responded well to in the past. My doctor threw in the towel and said the lesions have to come out. So, in March 2022, Yasmeen + surgery numbers 32, 33, 34. I think. I stopped accurately counting after 30 - seemed a little pointless. March 2022 was also 8 months before James and I #yountingdowntheaisle.
Surgeries follow the same procedure at least for me. The routine and recovery I follow for them is consistent. Mentally, it’s a relief. They are outpatient, and always performed by my Doctor on a Wednesday. James takes the day off to be in the office with me, and I know the staff at the office. If I’m feeling anxious or stressed, I’m not leaning into that feeling because I’ve done this to the point where it’s a rinse and repeat. The lesions and surrounding affected areas come out, the stitches go in - recovery begins. The pain isn’t the actual process of taking lesions out, it’s the recovery that hurts. Recovery pain f**** me up and simultaneously reminds me how gloriously strong my #meatsack aka body is.
Recovery is a time when the rules are as follows:
I can’t sweat - I work out 4 to 5x a week when I’m not suffering from heavy symptomology. I enjoy working out, I enjoy feeding my body #mvmt it craves and food that will fuel it
I can’t have friction on my underarms or raise them past 45 to 65 degrees - sleep on your side? Forget it. On your stomach? Forget it. Wash your hair by yourself? Forget it. Want to have sex with your fiance, better simmer down. Cause.it.ain’t.gonna.happen
I can’t really do a whole lot of anything except lay in bed. No #mvmt. Great for the scale which I can totally torture myself with because all it requires is for me to stand on it.
I can’t be social, not because I don’t want to be, but because my energetic priority is on getting better and putting one foot in front of the other. It’s an incredibly isolating time.
A little caveat here - James and I don’t even really broadcast the news outside of our closest friends. We almost never tell my parents, my mom freaks out and starts to stress call every medical family member she knows. Just to give you an idea, 3 cousins, 1 uncle, and 1 grandpa are doctors and that's just a preview. Hint, it’s not helpful.
Fast forward to my first post-op appointment. I’m reacting to my stitches, badly, the skin is red, tender, and swollen. The stitches have to come out early. Meaning I will have open wounds. These wounds have to be cleaned daily, allowed to drain, and kept as dry as possible - did I mention we live in Georgia? Summer starts promptly in April (iykyk a**crack sweat season begins - thankfully this wasn’t a downstairs surgery).
During this post-op appointment, we also make a collective decision (James, me, my specialist, my nurses, and medical assistants) that it’s time to add a #biologic to the mix. This one in particular is great at treating #HS and helps reduce the long-term risk of heart-related illnesses in patients with #HS. James hears increased quality of life and longevity for me and he’s all in. It requires 2 subcutaneous injections monthly. James quickly learned how to administer the injections and the drug became part of our routine.
Simultaneously, during surgery, post-op, and starting the biologic, we were planning #yountingdowntheaisle. And attending no less than 7 other weddings. It was going to be a long and busy year, celebrating the people we loved most.
I had an idea of the #weddingdress and #designer that I wanted to wear. She had a sample sale and I purchased a dress that fit and was exactly what I wanted. Plot twist. I bought the dress for 165 lb., me, not 195 lb., me. Trying on the dress after surgery and sort of just out of post-op, it didn’t fit, like in a big way. Not just that it didn’t zip up, but the dress was digging into the outskirts of those fresh surgery scars, the ones with all the rules for recovery. In the photos above you can see the red outlines of inflammation not related to the wound itself. Irritating that, or re-irritating anything related to the original incision would cause significant wound care problems.
Mentally, I took a straight beating. I’d lost a body I fought hard for. I’m struggling with new scars and new medications in the mix. I’m throwing a smile on my face for everyone (except James and my providers). And, I also don't want to talk about any of it. I just want to leave it in a compartment I can revisit at a less stressful time. But no, I’m confronted with a stark reality. I don’t have any control over what I’m going to wear because the circumstances of my body, and my figure have changed. And, it’s irresponsible to assume that they’ll go back to what they were. It’s now time to make an incredibly hard decision - it’s time to change my wedding dress.
Stay tuned for part 2! If you made it this far, the best thing you can do to help get the word out is like, share, and comment, on the GRAM :)
With brutal honesty, wrapped in good intentions,
@yasmeenemilia