#i just don’t remember anyone specifically mentioning breast size changing - so that wasn’t something i was expecting

[starbuck]

everyone: going on t redistributes your body fat

me: okay

me, 9 months later, realizing my breasts have shrunk two whole cup sizes:

[mylifewithhurley]

My Life with Hurley Story

My Hidradenitis Suppurativa Story

l believe the best way to start is with a description of the disease - and this is my description of the disease, based mostly on my experiences, but also drawing from the hundreds of medical articles, forums, and discussions I've had the pleasure of reading over the past decade in my attempts to understand and manage my disease better. Hidradenitis Suppurativa (HS) is a chronic skin disease, in which pus and blood-filled abscesses form under the skin in the groin area, inner thighs, armpits and under the breasts. These abscesses can range from the size of a pea to as large as baseballs. They grow in size until they are close enough to the surface of the skin, and may break open. When they do, they either do not heal at all, or take a very long time to heal... I'm talking years. As open wounds, they constantly leak blood and pus. There is nothing more horrid than the smell of an HS wound, trust me. They are extremely painful, if you can imagine. Large abscesses can often restrict your ability to move your arms, if they are located in the armpit, or restrict your ability to walk and make it vert uncomfortable to sit, if they are in the groin or inner thigh area. With all that being said, you can imagine the shame and embarrassment such a condition can bring to a person. An individual with this disease can be extremely self-conscious and depression is very likely as well. There are some points I'd like to stress before I move on to my personal experience with the disease.

HS is NOT contagious. It is NOT the individuals fault. No one knows why this happens. HS has NOTHING to do with a person's hygiene. HS has NO cure!

IN THE BEGINNING...

My HS started out as small pus-filled bumps on my groin when I was around 15 years old. These were easily popped open and were not painful. They would come and go. They were a nuisance, but were not totally alarming. I did not know I had a "disease" at this time. I did not seek medical care. I was about 20 when bumps started appearing around my breasts. These were larger and had to grow a few days before I was physically able to squeeze them out. The pus was generally very dry, like something that would come out of a pimple on your face. It would quickly shoot out and splatter onto the mirror or whatever I was in front of. I mention this only to illustrate the change in consistency of the pus over time. They would heal, but always come back. Same spot, same size. Seeking help was difficult. I didn't want anyone to see. I can remember going to a walk-in doctor who prescribed a topical cream to rub on them. That didn't help. Eventually, the pain was too much to bare and I was forced to go to the emergency room. I went in the middle of the night. I had an abscess about the size of a quarter on my chest, between my breasts. It was so painful, I couldn't sleep. I had my first I&D (incision & drainage) that night with a very nice doctor. After he had cut it, he told me a nurse would come in to "pack" the wound and that I would be set up with home care. I didn't know what "packing" meant at that time, so when the nurse came in and simply covered the wound with gauze and tape, I thought I was good to go. That specific wound came and went over the years but it would easily break open after a week or so, and the pus and blood would pour out, like syrup, messing up my bra and clothes.

I went to a walk-in maybe a year or so later who I could tell really sympathized with me, but truly didn't know what to do. She referred me to a dermatologist. I waited months to see her. When I finally did, she was cold towards me. I didn't feel like she cared as she told me there was no point in treating this externally (I was hoping she would cut one or two open to give me some relief). She told me the only way to get rid of this was to do it from the inside. She prescribed me some pills (probably an antibiotic). I asked her if it had worked for others, and she nodded yes and she scooted me out. The pills she prescribed did wonders for the acne on my face but absolutely nothing for my HS. I was told to come back and see her in three months, but I never did. She didn't care enough.

For a long time, I just waited for the lesions to grow large and break open on their own. There's one that I actually tried opening with a needle (DO NOT DO THIS), and of course I just made it worse and probably make it stick around a lot longer than it would have had I just gone to a doctor. I had started working full time when I began getting abscesses on my upper leg, extremely close to my groin and bottom. This was extremely painful. I had to find creative ways to sit on my chair without drawing too much attention to myself. There were many days I wouldn't even sit. I would just do type on the computer standing up, pretending like I was only checking something out on the computer and would have to leave in a second to do something else. The days in which I did sit, I learned I needed to sit on my jacket or sweater, in order to not stain the chair with the drainage coming out of my open wounds, seeping through my pants and onto the furniture. I often walked funny, trying to avoid feeling the wounds rubbing against my pants. If anyone asked why, I just told them I had a problem in my leg.

It was a Sunday night when I decided I needed to see a doctor to drain one lesion on my inner buttocks. My mother took me to the emergency room. When the doctor had seen how large the abscess was, and the others that surrounded it, he called for a surgeon to come and take a look. The surgeon told me that I needed surgery, but because I had eaten dinner that night, and she and her team had already had a long day, I agreed to come back in on Wednesday for surgery. On that day, while the surgeon was briefing me on the surgery, I asked her if she didn't mind also draining a lesion under my arm. When I showed it to her, she couldn't refuse. When I awoke from surgery, she mentioned that she had arranged for a Infectious Disease doctor in the morning and also told me that I may want to consider plastic surgery, a suggestion I wish I had taken at that time. I was released from the hospital the following day and set up with home health care.

The Infectious Disease doctor examined me and prescribed me two antibiotics to take over a period of three months. Whether theses helped my case or not, I'm not sure. It's possible I could have been worse off if I hadn't taken them, but I wasn't getting better. I went on living my life just waiting for my abscesses to open and draining them myself - or going to the emergency room if I thought it was getting too large with no signs that it was going to resolve on its own. Going to the ER always meant that I was going to be set up with home health care, or what they call CCAC (Community Care Access Centre). Nurses could either come to your home to change your dressings and check on the progress of your wound, or, as they preferred, you could go into a near-by clinic every day or every other day for the same service. This may be common knowledge, but there are great nurses, and there are terrible nurses. I could write a book about my bad experiences with CCAC, but I won't elaborate. The point is, more often than not, CCAC nurses made my life more difficult than pleasant. 

DERMATOLOGY

My sister had told me about a dermatologist that would see patients without a referral. This sounded great to me because having to explain to doctor after doctor (or anyone, for that matter) about your disease and the things you've already tried to manage it is exhausting. I called and made myself an appointment for a few months later. When I met with Dr. A, I felt like he sympathized me and I had hope. He knew my disease. He had patients with my disease. He had touched my wounds and wiped away pus. He sampled the pus for testing. These are things the first dermatologist I had seen never did. He had a son who worked in clinical trials and had just finished a study on my disease with an expensive treatment called Humira. He called his son right there in the patient room to ask him if he knew of any upcoming studies so that I could possibly get medication for free, but unfortunately the answer was no. He had also treated patients with HS with Accutane, but this too was expensive. With the knowledge that I didn't have any drug coverage, Dr. A prescribed me two strong antibiotics to take over a course of three months. Those antibiotics did help some. When I revisited Dr. A after the three months had passed, he prescribed me another run of the antibiotics.

HS controls my life in every way. There's not a moment I'm not thinking about it. There's not a minute I am not uncomfortable or not in pain. There is not a decision I make without considering my disease. I have to think about my HS before doing the smallest tasks. There are times I put off going to the bathroom just because getting up, changing positions, can cause so much pain and discomfort, and I'm literally mentally preparing myself for what I'm about to experience. Needless to say, there are many activities I just cannot participate in. Simply getting into the car can be difficult. I dread going shopping - too much walking, which means wounds rubbing against my clothes. I'm often caught off guard when someone asks me why I'm walking funny, or holding my arm awkwardly, because I think I'm hiding it so well. HS also controls what I can wear. As much as I love form-fitting clothes, its just not comfortable to be in them. I don't wear anything white - my wounds will stain it. I don't wear anything sleeveless - my underarms are full of wounds I don't want anyone to see, not to mention the drainage that will have no place to hide. I try to wear my clothing as loosely as possible, but I'm fighting to keep my pride, despite this disease and I hate to look shabby. Depression is all over my face. I try to act happy as best I can, to not bring any attention to myself. I look back at old pictures, and miss how happy I was and how beautiful it was to not be in pain; to just feel nothing. I cry all the time. The tears often start because of the physical pain - but they quickly grow into a bawl just thinking about everything I've already been through, how much the disease controls my life, and how I don't have any idea how to make this better. HS affects my sleep, because it's not easy to fall asleep while you're in pain or you're too busy scratching or squeezing a nuisance of a wound. It's frustrating just knowing that I can't just tell someone, 'I have HS' and have them just know what it is and have a small idea what I'm going through - as I could have if I had something like arthritis or psoriasis. No one knows what this is. No one has heard of it. No one can ever understand - and so I don't try to explain it. I've tried before, and it only leads to individuals thinking they know how to take care of it. I've been told just to scrub it, just to take the pain and squeeze it out and it'll go away and never come back. I've been told to just use natural soaps; that my skin just can't handle the harsh chemicals. I've even been told that it's because I don't pray hard enough. Everybody thinks know, but nobody really knows. It hurts to know that people don't believe me when I say this is an actual disease! It cannot be healed by something as simple as washing it away. If it were that easy, I would have rid myself of this a long time ago, believe me. Would you tell a cancer patient to just wash it off? I didn't think so. My loved ones, who know my condition still don't know what I truly live with because I try so hard to be normal, act like it doesn't bother me, around them. Firstly, because I don't want their ideas on how to 'easily fix' the problem, and secondly, because I don't want to be pitied. I just want to be free. 

After two three-month courses of antibiotics, I was over it. I was over putting these pills into my body just to get little to no results. I stopped seeing Dr. A and went back to just dealing with it - drug free. This meant frequent visits to the emergency room and urgent care centres, and of course just waiting for some to burst on their own. I remember crying to a doctor at an urgent care, telling her how tired I was and asking her to I&D an abscess under my armpit. She told me there was no way to cure this and I was just going to have to live with it. How rude! I mean, so far I haven't found what she said to be untrue, but she could have been a little more comforting and optimistic. Can you believe she didn't even cut the abscess? She told me to take some antibiotics and wait for it to break open on its own. With this disease, I've learned that you're going to have to kiss many frogs to find your prince - kisses being doctor appointments, frogs being doctors, and the prince being a doctor who doesn't necessarily have all the answers, but just cares enough to try, and then try again. That night, I was in so much pain and a doctor refused to help me. Physically and mentally, I was fed up. I actually quit my job that next morning and applied for Employment Insurance. Getting up and ready in the morning was too hard and my supervisor was beginning to give me a hard time for the times I showed up a few minutes late after giving too much attention to a wound in the morning. I was physically and emotionally tired, and I truly just needed a break. So I quit. 

I must have had enough of 'just dealing with it on my own' again, because I decided to go see a doctor one more time. I went to see a family doctor, who prescribed me some antibiotics but also referred me to a lovely dermatologist, Dr. Nisha Mistry. Oh, Dr. Mistry, what can I say about you? On my first visit, she presented me with print-outs and spoke to me on what HS is, what the different causes might be and different treatments. Now, I had already read most of this online while doing my own research, but it truly meant a lot to me that she had taken the time out to read up on my disease prior to my visit. After I told her I had already tried antibiotics - maybe too many times, she told me about Humira. Humira defined by www.drugs.com:  "Humira (adalimumab) reduces the effects of a substance in the body that can cause inflammation. Humira is used to treat rheumatoid arthritis, juvenile idiopathic arthritis, psoriatic arthritis, ankylosing spondylitis, plaque psoriasis, and and a chronic skin condition called hidradenitis suppurativa."  Don't you just love how HS is the only disease they had to briefly define? She explained that she would only recommend this in extremely severe cases, because of the possible side effects. She had me change into a gown, and after taking a look at my wounds, she agreed I had a severe case. Unfortunately, like Dr. A had told me over a year prior, Humira is very expensive, and I didn't not have any drug coverage. She too, like Dr. A, knew of some clinical trials in which I could get the drug for free, but the trials had just ended before my meeting with her. That's when she told me about a program called compassionate care - where the Canadian government actually pays for your medicine because your doctor feels so terribly for you. That's my definition of compassionate care, anyway. She didn't make me any promises at that time, but told me she would put in an application for me. I was approved! There were a few tests and things I needed to do before I could officially start, but I eventually began my Humira treatment a few months later.  I also started working again around the start of my Humira treatment, about four months after I had quit my last job. 

I have to believe Humira helped me. It did not cure me, but I feel like my case got better. It's hard to say for sure because every time I would meet with Dr. Mistry for a check up, she would say it didn't look any better. But I felt better. My range of motion improved and I feel I was able to do more things a little more comfortably. I was still making visits to the emergency room, however. After one particular visit where I ended up staying the night, the hospital notified Dr. Mistry. She called me in a panic about a week later demanding that I come and see her right away. The hospital had totally exaggerated my symptoms. Apparently I had a fever when I was admitted, but they told her I came in shivering! They even told her I had been there for 3 days when it had really just been one night. I explained to her that it wasn't as serious as they made it seem, but she was still very concerned. She suggested I stop taking Humira immediately. At that time, I begged her to let me continue, but she pointed out that after eight months of treatment, I was not seeing sufficient results, and with the side effects of Humira, it may have been causing more harm than good. I agreed to stop, and after discussing with her some of the symptoms I was experiencing, she referred me to a gastroenterologist to check for Chron's disease, an internal medicine specialist, to just check me in general, and a general surgeon to actually operate on the HS manifestations. 

SURGERY

Dr. Mistry had suggested I see the gastroenterologist for of some of the symptoms I was experiencing. I had a consult with the gastroenterologist to explain my medical history and my recent symptoms. At that time, he said if it was Chron's, the Humira should have helped with that - but he proceeded to schedule me for a colonoscopy anyway. I was cleared for Chron's - which I was happy about - but that doctor never really addressed the reasons I may have been experiencing the symptoms Dr. Mistry was worried about. Sigh. Doctors. Dr. Mistry had wanted me to see an internal medicine doctor because I was experiencing many fevers and she just wanted to make sure my body chemistry was alright. Somehow that appointment never happened. I was, however, scheduled to meet with general surgeon Dr. K for a consultation, rather quickly, I might add. She was lovely. Before examining me, she explained that she was only a general surgeon, and if my case would require something called a 'flap', then she would have to refer me to a plastic surgeon. A quick glance at my skin would confirm that I, of course, was more of a plastic surgery candidate. My heart sank. Luckily, she knew of an excellent plastic surgeon, she said, and would be able to get me an appointment with him a lot sooner than it would typically take. She was very sympathetic and encouraging and I really wished she could be my surgeon. At that time, I had recently been to the hospital for an I&D and was visiting the CCAC nurses every night. Getting the wound packed was very painful because the incision had been made so small. Dr. K was nice enough to widen it for me. As her nurse was dressing the wound, she assured me that the plastic surgeon I was being referred to was very good, told me I was very brave and that she was impressed with how high my spirits were. If only she knew I was fighting back the tears that would burst out of me as soon as I entered my car. 

It felt like forever before I got a chance to see the plastic surgeon, Dr. T. If Dr. K had in fact expedited my appointment, I feel really sorry for those who don't have that privilege. My parents came with me to this appointment. After I had told them about what happened at my appointment with Dr. K, my dad told me to let him know of any future appointments. It means a lot to me that he didn't want me going alone. I'm guessing Dr. T had just finished reading a Wikipedia page or something on HS when he walked into my room because he was basically telling me all the things I would have read had I quickly did a google search on the disease. He basically told me at that time that surgery was not a good idea because of complications and scarring. This was before he even looked at my skin. After examining me, he tells me that he would prefer I go and see Dr. S, an expert in HS, and he would only perform the surgery if Dr. S recommended it. He told me that he would put in the referral, but not to worry because his office scheduled appointments quickly. In the mean time, he told me to focus on losing weight because HS was often made worse by heaviness. I am not a skinny girl, but I am not huge either. Weight may be a factor in other peoples HS, but not mine. I know this because I had actually lost quite a bit due to stress (of the disease) and my symptoms did not change. I didn't take it personally though. I knew he was just spewing out whatever he had just read on the internet. I was devastated, still. I had really high hopes about him because Dr. K and her nurse had praised him so much. I had even warned a supervisor at work that I may have to take time off shorty in order to recover from surgery. So of course, my heart was crushed. Another appointment that had caused me to go home and cry. 

At this point, I'm waiting for an appointment from Dr. S, but not really, because for one, I had already seen a GREAT dermatologist in Dr. Mistry, and she had already recommended surgery, and two, I no longer trusted Dr. T. It didn't seem like he was eager to help me, and so I didn't want him to. I went back to 'just dealing with it', until I got a call from Dr. Mistry's office asking me to come in to talk about renewing my Humira prescription. I thought this was odd, seeing that I had stopped taking Humira, and Dr. Mistry knew of this. I went in to see her, anyway. I told her about my experiences with Dr. Kapala and Dr. T. She told me that she actually worked for Dr. Sibbald (who still hadn't called me for an appointment, by the way), on his team in his office on Fridays, and she knew for sure he would recommend surgery. This made me even more upset at Dr. T. She offered to refer me to another surgeon. I explained to her how frustrated and exhausted I was at all the appointments and disappointments - and that I needed a break from it. She understood completely, and let me know I could call her whenever I was ready to try again.  

I got another odd call from Dr. Mistry's office a couple months later telling me that Dr. Mistry wanted me to call her to discuss my test results. It was odd because I hadn't taken any tests. I called anyway. She explained that she had been in contact with a Humira spokesperson who had asked her about my Humira experience. After she had told him that I didn't really benefit from it, he told her of a plastic surgeon who would love to help, as a 'special favor'. She said she knows I had opted to take a break from surgery consultations, but she didn't want to let the opportunity pass without offering it to me. I accepted. I wanted to at least talk to this surgeon. I was still in pain, and maybe this was my luck finally turning around. 

I met with Dr. CT on Monday, November 21st, 2016. She asked about my Humira experience and about the surgeons I had seen before her. After I told her that Dr. T had basically told me he didn't want to do it, she told me that nobody wants to do it. She explained it was an extremely messy surgery that would require a skin graft and two separate surgery weeks apart, and after all of that, my body may reject it. When briefly describing what surgery on my lower body would be like, she mentioned that I would have to urinate in a bag temporarily. As you can imagine, this is where the tears starting filling my eyes. As she was working really hard to turn me off this surgery, I'm sitting there wondering why I was even invited to this appointment. I was told that there was a surgeon who wanted to help me as a special favor and when I met her, I felt like I was just being kicked in the gut. I told Dr. Mistry I needed a break from the heartbreak of surgeons telling me they can't help me, and she sent me to a surgeon that would reject me again. The surgery did sound awful, I have to admit. Her goal was clearly to make me change my mind about desperately wanting the surgery, and she did so well that I even forgave Dr. T for rejecting me. After seeing the tears run down my face and the disappointment in my eyes, Dr. CT offered to refer me to a plastic surgeon at St. Mikes Hospital who had done more complicated HS surgeries. I declined. I was so over it. Instead of surgery, Dr. CT suggested that I should go back on Humira. She stressed that it is a very new drug and it will get better and work. Whatever. I was on Humira for eight months and it barely helped me. I'm convinced I was just injecting cancer into myself and not seeing any immediate benefits with my HS. I refuse to go back on Humira. Something has got to give. 

Dr. CT called me herself the next evening at 7:00PM to tell me she had spoken to the Humira representative, and he was doing to be in touch with Dr. Mistry in recommending some other dermatologists that have a little more experience with HS. She also said that she would contact Dr. Melinda Musgrave, the plastics surgeon at St. Mikes, and ask about any new approaches she has come across and can suggest. She explained St. Mikes is trying to develop a clinic of some sort where they can talk to HS patients about lifestyle changes, such as diet, that may minimize the effects of HS. She stressed that even though she didn't think surgery was a solution to HS, she didn't want me to believe that there was no hope, and that there were hopefully a couple things we could try before taking that route. The call meant everything for me. It lifted my spirits. It just felt like there was another doctor out there, in addition to Dr. Mistry, who was in my corner - who saw my pain and truly wanted to help.

NATUROPATHY

I had reached out to a naturopath, Dr. S. The appointment was booked for a few days after I got the call from Dr. Mistry about Dr. CT, and I almost cancelled it thinking that I wouldn't need him anymore because Dr. Mistry found me someone that would help, but I didn't. During my first appointment with him, I just spent the hour telling him about my disease and how it affected me daily. He asked questions, I would answer them. He ended the appointment by telling me that he "really, really, really wanted to help" me, and gave me a few of his ideas. He prescribed me Effer C, a supplement to help me go to the bathroom more often and Vitamin D, and we booked an appointment for about 3 weeks later. By the next appointment, he had a very detailed plan written up that predicted to have me pretty much healed in six months. The plan included a couple supplements, something called colonics, and a strict diet of no dairy, sugar, gluten or wheat. As you can imagine, sticking to that diet proved to be difficult, but I did try. I saw little to no results, but to be fair - I was not completely committed. I went to a few subsequent appointments, but naturooathy is not covered by OHIP, and although my work insurance covered a lot of the cost, it was becoming expensive to keep seeing him, and during the appointments, he was mostly just making other suggestions of changes I could make to my diet. I felt like I could handle that on my own. 

What's it like to feel nothing? I miss feeling nothing. No discomfort, no pain, no sting. I used to take feeling nothing for granted, and now I know how precious it is. I miss being able to sit down on a chair, a bed, the floor, without feeling anything. I miss being able to get into a car without feeling anything. I miss being able to drive without feeling anything. I miss walking and feeling nothing. Oh, I miss going up and down stairs without feeling anything! I miss putting on my panties, my pants, my bra, my shirt, my coat, without feeling anything. What's it like to get in and out of bed without feeling anything? To take a shower and feel nothing?

SURGERY PT. 2

After that meeting in November 2016 with Dr. CT, I hadn't really been to any doctors, with the exception of the few additional visits with the naturopath. I gained a little relief by changing my diet - but no major improvements. In April 2018, the drainage coming from my arms was uncontrollable. My shirts were soaking wet within a few minutes of changing into them. I didn't know what else to do except to plea with a surgeon to operate on me. I chose Dr. CT. I met with her on June 6th 2018. Again, she illustrated a nasty surgery that might not even be successful. I told her I didn't care, I needed to do something. She offered to send me down to St. Michael's Hopsital to see plastic surgeon Dr. Melinda Musgrave or her colleague Dr. Karen Cross, who do a lot more work with HS. I agreed to a referral, just because I could tell how badly she did not want to operate on me. If you'll recall, she had mentioned referring me to these doctors before, but nothing ever came of it.

This time, I got a surgery consultation with plastics surgeon Dr. Karen Cross, scheduled originally for November 2018, but moved up to September 2018. It was simply and honestly the best consult I've ever had. She specializes in HS surgeries and really can't imagine why I hadn't been referred to her before. She told me I was an excellent candidate for surgery, but she agreed that my disease was so active that it probably wouldn't be effective. She requested that I see a dermatologist of her choice, follow their suggested treatment for about three months, and after the disease had calmed down, she would operate. I loved speaking with her because she just got it. She knew exactly how I was feeling as a person living with HS without me having to tell her. She knew and answered all my questions before I even had a chance to ask. It was obvious she had spent real time with other HS patients because she truly just got it. She was so hopeful and encouraging. She let me know that it would be a long journey to recovery, but that we would be on that journey together - and that I should always let her know where my head is at and how I'm truly feeling not only physically, but emotionally. I had never met a surgeon like her and even if I don't end up getting a surgery, I'm so glad that my path lead me to her - just to know doctors like her exist. 

CLINICAL TRIALS

Dr. Cross referred me to dermatologist Dr. Afsaneh Alavi, also specializing in HS. She enrolled me into a clinical research study for a potential new "antibody therapy". Without going into much detail, I was required to go into a clinic every two weeks for intravenous infusion and complete a small questionnaire on a phone-like device nightly. I officially began getting dosed in October of 2018. A lot like my experience with Humira, I couldn't see any changes in the way the disease physically presented itself, but I can say the day to day pain dropped considerably and my quality of life increased. However, in mid-December, I developed a large abscess on my upper thigh. It had been growing in size and pain for about a week before my next scheduled infusion and meeting with Dr. Alavi. After examining the abscess, she decided immediately to take me off the study and arranged for me to have it drained that morning. She prescribed Ertapenem, an antibiotic infused intravenously daily, for four weeks.

ERTAPENEM

Ertapenem is an antibiotic administered intravenously. I was taught how to run the IV on my own at home. It took about 30-45 minutes and then I would wrap up the IV site with gauze until I was ready to do it again the next day. While showering, I used a arm cast protector I found in a home health care store. It's basically a long plastic glove-bag that spans the entire arm, the way a cast would, and tightly seals before the shoulder. I couldn't use that arm to clean myself with, but the IV site was protected from the water. My IV site would have to be changed every 3-5 days. I would go to a CCAC clinic to have a nurse set up a basic IV line in my arm or hand. I have very difficult veins, and so nurses often had a hard time starting my IV. On every visit, I was poked multiple times before one was successful. There was a night when the nurses were not able to find a good vein, and I was sent to the emergency room for one of the nurses there to try. I waited four hours that night just to get an IV started. Initially, the plan was for me to have a procedure done to get a 'picc line', which is more secure than the regular IV and could remain in my arm for weeks without having to be moved, but that wasn't scheduled until week three of my four week course of the drug and it just didn't make sense at that point. All this to say, the treatment of Ertapenem caused some minor inconveniences, but overall I was pleased with the results. 

Ertapenem was the best treatment I've received so far. I felt virtually no pain during the 4 weeks I was on the medication. My wounds pretty much dried up. Although you could still see them, there was no drainage coming from any of my wounds. My clothes remained dry throughout the day and through the night and I never worried about staining my seat. Proving this, my laundry loads we significantly smaller and my jeans/pants were clean enough to re-wear before washing.

CLINICAL TRIAL DRUG: IFX-1

Although an effective treatment for me, I could not remain on Ertapenem for very long. Antibiotics are not meant to be taken long-term. I was on the drug for about five weeks. With permission from the sponsors and executives of the clinical trial, Dr. Alavi allowed me to continue treatment with the clinical drug, IFX-1. During the first phase of the trial, I was either being given the active drug, or a placebo. Dr. Alavi wanted to give me a chance to enter the second phase of the trial, which guaranteed active drug administration.

Since beginning the second phase, I can confidently say I feel better. I have not experienced any large new abscesses, and the ones I already had are smaller and draining less. The most improved symptom is my ability to move; my range of motion. I am able to move my arms and legs in ways I wasn't able to do before. This alone has improved my mood and my quality of life. Dr. Alavi agrees, I will still need surgery to remove the skin that the HS has completely destroyed over the years, but if this drug makes it to the market, I believe it could help many of us keep the disease under control. 

December 30th, 2019 Dr. Cross performed a 'left axilla extraction with flap' surgery on October 31st, 2019. She removed all of the affected skin from my armpit and pulled skin from my back to replace the missing skin. It was a day surgery that took about 3 hours. The wound was cared for by near by clinic nurses. It took a little over a month to fully close. The surgery went extremely well and I am please with the results. I will meet with Dr. Cross again in a few months to talk about my right arm. Dr. Alavi thinks I should return to Humira in the mean time, but at this point, I don't think I want to take that route. I know it's only been a couple months, but I believe surgery is the solution for me. 

November 22nd, 2020 Dr. Cross performed the same surgery, this time on my right axilla on August 20th, 2020. Again, the surgery went well and I am pleased with the results. Now, I don’t have any inflammation or affected skin in my armpits and it’s truly changed my life. I can wear sleeveless tops and I don’t have to worry about drainage messing up tops with sleeves. I can finally wear white if I choose to. I do still have some HS on my lower body, but nothing that warrants the surgeries I needed for my arms. I will try to treat what’s left with diet changes - specifically the keto diet and will keep you updated.

The rest is still unwritten...

[criticalbread]

body positivity & associated baggage

Just some thoughts and things I discussed with my super cool ex-therapist but-- body positivity is hard, y’all. We can believe one thing and feel another so easily, and then blame ourselves for what we feel. We can think, “I don’t believe anyone should ever be made to feel badly about their body”; “I believe every body size and shape is a good one”; “Every trans body is beautiful and perfect”; “Accepted beauty norms are not the only way to be”. Oftentimes, though, our emotional reactions seemed to contradict the things we believe. We sometimes feel bad feelings about our bodies, their sizes or shapes, we react to what we think they should be and aren’t, to those parts of us that don’t fit the hair-thin range of beauty represented in media. The entire body positivity process of trying to shift these things, what we believe and what we feel, shows quite clearly that belief and emotion are not the same thing, and that they don’t always shift at the same speed.

For me, a lot of body positivity seemed to imply the end goal of feeling, well, positively about my body. The fact that I haven’t been, and often feel negatively, can make me feel like I’m failing at the whole thing, especially as a trans person. There are some important points, though, that my therapist has walked me through that have really helped, and I thought to share them.

==Going from negative to positive in your thoughts and feelings can actually be pretty tough. It’s a huge leap from one end to the other. And why does it have to be? The first step in healing your relationship with your body is some times reaching neutrality. The body isn’t qualitative-- it doesn’t have any quality attached to it like goodness or badness, not until we ourselves attach it. Can you find ways to allow your body some neutrality? Can you try sitting in that neutrality when you find it and just experience it? 

For me, I like to go on walks around my very beautiful neighborhood and park and try to focus on the sensory experiences of my body. I hear my feet on the sidewalk or crunching in mulch, grass, or gravel (pavements are for squares); I hear myself breathing; I feel the wind on my arms, or the sun on my shoulders; I hear wind in the trees, and birds. Another one I try is taking hot baths. I like to watch shows or read in the bath, but I also try to take a moment when getting in to really feel the comfortable heat and smell anything I put in like lavender and just exist in my body. (If I’m feeling really bold, I try to look down at my body exactly as it is and sit in some neutrality and, if I can, gratefulness. Like, “huh. this body is pretty okay.” or “hey there, leggies. thanks for taking me walking.”) In the end, it’s not a good or a bad body because it doesn’t have to be. It just is, and I’m in it and experiencing it. Neutrality is a much better place to try and feel out positivity from than negativity. The leap is shorter! And it feels a lot better than negativity, too.

==It’s one thing to be able to change your beliefs about your body or other bodies or all bodies. It’s quite another to change your emotional reactions. A lot of the time, our emotional reactions are not based solely on what we believe. They’re influenced by a lot of things: by experiences we’ve had, by things we’ve felt in the past, by what we have seen or haven’t seen, by how we weigh the worth of our own happiness and selves, even by habit. They’re reactive. My therapist would often remind me when I was distressed by my feelings, especially when they didn’t match what I believe, that healing begins in the body. Reconnecting to your body through mindfulness, showing it acceptance and finding neutrality, finding ways to appreciate or feel grateful, even the old “fake it til you make it” (”You’re good thighs,” I thought fiercely at my thighs about 300 times before I actually began to feel that they were maybe okay thighs)-- all go a long way to finally budging some of those stubborn knee-jerk bad feelings. So as they told me, “Be kind to yourself. When you have they feelings, treat yourself with the same kindness you give your friends.” As you work towards a more positive outlook, remember that your feelings may feel bad, but you’re not bad for feeling them. Even negative feelings are not qualitative; they just exist as a neutral thing that happens and, more importantly, like all feelings they end.

==Related to finding neutrality, but-- as a nonbinary trans person, I have periods where I go through intense dysphoria. Clothes that had been fine that morning I suddenly can’t stand to wear a moment longer, and I want to disappear from the public eye the moment these feelings hit. I am mortified to think people have been looking at me and gendering me a certain way all day. I feel mortified at the body under my clothes which, more often than not, is why people gender me a certain way. I would start to feel that I wasn’t “trans enough”, that I needed to somehow do more and do better to be REALLY myself, A Nonbinary Person. These times are super hard to deal with, and give me a very low mood.

A recent breakthrough that came from talking with Ex-therapist is this: as an AFAB person who doesn’t bind and has a noticeable hour-glass figure, who wears a lot of clothing designed for my body shape from the “womens” section, I felt keenly even without being able to describe it the gendering and disbelief of people around me at work who know I am nonbinary. In their mind, they were gendering my body as a woman’s body and my clothes (as well as how those clothes sit on my specific body) as a woman’s clothes. Even my “mens” clothes became "women’s clothes” by dint of sitting on top of a pair of breasts, or large hips. How, then, could I be trans? If body is A, shouldn’t clothes be B? I actually had people ask me why I still, “dress like a woman,” when in reality I heard the question under that one: “why does your body look like what I consider to be a woman’s body? and why are you okay with that? are you even really trans?”

My intense dysphoria, I noticed, usually started in a public place when I would catch myself staring at a mirror or my reflection in a window. Without thinking, I looked at myself  and judged not from my perspective, but from an outside perspective. I became my own audience, complete with the midgendering that I had come to expect from my audiences. I was getting anxious and so mixed up by disconnecting from my own feelings about my bodies and clothes and focusing solely on “How would a stranger look at and see me? How would they gender me? Do I look nonbinary to the world?” 

One way to deal with this, I found, was to Distract and Drown Out. The moment I catch myself staring and judging and spiraling, I look away and find something else to focus on, like my phone or a book. Next is to drown out the thoughts and feelings spiral by focusing on repeating to myself the things I actually believe: “My body is not inherently gendered. It is a body. Because it is mine, it is a nonbinary body and an awesome one at that. I like how strong and dense my lower body is, and how easily I build muscle. I like my long curly hair. I like my soft thighs. No clothing is gendered. I picked these clothes because they’re cute/they’re comfy/it’s laundry day and I don’t give a fuck. They’re good clothes.” Usually by the end of this monologue, I’ve at least stopped spiraling emotionally and I’ve stopped the flood of bad thoughts. The next step: Distract. I might open a word doc and write some fic, or read some fic, until I get home. Maybe I Just write down all of the above-mentioned beliefs. The final step is to do some self care. Usually this means going on a walk with a good playlist, then taking a bath while watching Critical Role and laughing my ass off, and if I need to not looking at my reflection for a while until I settle back into neutral. If bad thoughts and feels start to resurface, I go back through the steps. 

**AS A NOTE, Ex-therapist ALWAYS needed to remind me: if all you can do to get through a bad feeling or low is to distract yourself, that’s good enough! That’s fantastic, even! It’s a very, very, VERY useful coping skill. It has its role just like every other coping skill. “But Leesh, I didn’t do any of the things I should have like studied or house work or-” But you did something very important, right? You had a need to cope with something, and you did so marvelously. You did what you needed to do. You took care of yourself. If all you can do to get through something is distract yourself with youtube videos or TV shows or video games or reading, then that’s good enough, and you’re doing good. Distract to take care of your mind, and keep some water and snacks near by to take care of your body, and know you’re doing your best and that’s more than good enough. There’s time later for all the things you think you should be doing now.**

As a final comment on this: my dysphoric periods can last a few days, or even just pop up randomly one morning while getting dressed. I’ll sometimes try on half a dozen different outfits and find myself unable to be happy in any of them. What to do then? 

Well, let’s unpack. A lot of the times, I’m still working through some of the outside misgendering of my body that I’ve internalized. As I put on my more masculine clothes, in my head I have an image of how they “should” look and what I want them to look like when I wear them. This image is usually based on how flat-chested or people who are binding look when they wear these clothes, people who also often have significantly smaller hips than me: the more stereotypical or accepted image of masculinity. Inevitably, I find that the clothes don’t look like that on me, because of my chest and hips. By going in to things with an unrealistic and impossible expectation, I set myself up for failure. I wasn’t working with my body. 

The method I’ve found that works best is this: I’ll take a step back from the tearing-apart-my-closet process and go, “Okay, I might not be able to like anything I put on my body today. I can accept that. It happens, and even though it sucks, I can get through it, and it will end. Instead of finding an outfit that I feel looks super good/perfect on me, and without deciding what I want it to look like on me before I try it on, can I find one that’s super comfortable for whatever activity I’m going to be doing? Can I just wear work clothes and let it be my IDGAF armor that I can just say I’m forced to wear and therefore don’t need to do The Gender Mathematics on? Can I find something I like on the hanger and decide to wear it simply because I like that it has Jeff Goldblum’s face on it or flower embroidery, and not try to compare how it looks on my body to some internal idea or checklist of how I want it to look on my body?” 

Usually, this works out for me with some finagling. I avoid looking at my reflection until the mood has passed if need be. If I start feeling badly about how I look in the thing, I Distract: “This is such a soft shirt. I’m super comfortable right now. I love that this shirt has Jeff Goldblum on it. When I wear my work apron, it looks like he’s suspiciously peeking over the top of it and that’s fucking hysterical because everyone at work apparently can recognize him by eyes alone.” As you can see, I and Ex-therapist are huge supporters for the Distract method. Derailing a thought spiral or feeling is often the easiest way to get it to end and to move past it towards some self-care and the rest of your day. (And yes, it does take practice to be able to do this! Oftentimes, the first step to learning the Distract skill is to just work on noticing when you’re spiraling or ruminating. Sometimes we aren’t aware of when we’re going down the rabbit hole. If you struggle with this, just give yourself the homework of trying to notice when you are. That’s it; you don’t have to then successfully distract or derail. Just notice and be aware. Once you’ve got that down, you can work on a successful Distract method of your own.) Once successfully Derailed, Distracted, clothed, and comfortable, maybe even starting to feel good about my Jeff Goldblum shirt, I am ready to go about my day with my game plan and then do some self care after.

**And this isn’t to say this only works for dysphoria! Being able to derail a spiral also helps with my anxiety, and may be useful for other things as well. The sky’s the limit!**

****And as a final note: all these coping skills that I’m supporting? Sometimes I forget they exist. Sometimes I’m so successful with them that I go, “Depression who?!” Sometimes I try them, and I don’t get all the way through them before giving up, or I’m not successful in distracting/derailing even when I use them. Sometimes I feel guilty and gross for distracting myself all day because I wasn’t productive and haven’t I been taught that that’s bad? If I can’t find neutrality and be grateful to my body this week, am I failing when last week I did so much better?

The answer? No. The truth is, no one succeeds 100% of the time. No one feels neutral or positive 100% of the time, not even whoever is the healthiest most well-adjusted people in the world! Bad feelings are a part of life and always will be, just like the universal truth that they will always end. If you tell yourself, “I’m going to use this coping skill next time,” or “I’m going to notice when I am spiraling next time,” and then you forget the coping skill or don’t notice the spiral-- maybe you will knee-jerk react by feeling like you’ve failed. But not managing a thing every time is not a failure! It’s natural. It’s part of the learning process, no in is successful every time, and it’s just part of the process of forming new neural pathways in your brain. Brains are things of habit, a bit like cats; at time intractable, at times resistant to new and to change, and often difficult to teach new tricks to. So be nice to your brain-cat. If it doesn’t work the first time, try again. Keep working at it as well as keep being nice to it and giving it nice things. If you don’t catch the spiral, maybe think back, note some of the signs or things that maybe caused it, and try to catch the next, and the one after. Say all the fake-it-til-you-make-it phrases even when you don’t believe them because you’re digging the trench of your next neural pathway and, yes, it’s repetitive hard work and not terribly fun, but you’ll get there. Accept yourself when you have a bad day, or when you start to go down the “I failed” route. Always try to find that neutrality and make it your home base.****

This has gotten super long and I still have some useful tidbits I picked up with The Best (ex)Therapist Ever, but I think I’ll end here for now. This post is largely written for my own needing to think through some things and put them into words, but if it helps some folks and give you some new ideas, I’ll be happy C: cheers and good evening, y’all.

[ezra-blue]

Blue Went On A Diet - With Photos!

Those of you who have been paying attention to my blog know that I’ve been keeping track of my diet/weight loss for the last year. In addition, I actually hit my weight loss goal on Monday! Even if you don’t care about my diet, how cool is that, right?

I wanted to take a minute to put this in context for you guys, so you can see where I’ve come from. So, let’s start from the beginning, shall we?

I’ve got pictures, too! Who wants pictures? Under the cut!

Before it all began. Yes that’s me, on the right. The one on the left is my evil twin (I’ve mentioned him, right?) This was taken on my third birthday, 1991. (I guess we were having a warm December.) As you can imagine, I was fine then!

The trouble started around when I was seven or eight. I got sick, badly, out of nowhere. I couldn’t breathe sometimes, I would go down a flight of stairs and get winded. I was diagnosed with acute asthma, I began to need weekly nebulizer treatments and therapy, daily inhalers and an emergency inhaler for attacks. I was warned to be careful during vigorous exercise, as I could have an attack and my lungs could close up. I was a kid. This was terrifying for me. 

I tried to stay active, but I was scared of having an attack, so I’d hold back, and it wouldn’t be as much fun. Gradually, I became less interested in keeping active. No risk of having an attack if I was watching TV or playing video games, right? Plus, TV and video games are fun.

I don’t have a lot of photos of myself from this time. I was socially awkward and shy, so I didn’t go to parties or events, and my family weren’t enthusiastic photo-takers anyway.

As I got into my teenage years, I continued my sedentary hobbies, and I also made friends who would do sedentary activities with me. I spent long hours on the computer, writing, roleplaying, or playing games, eating junk food and drinking soda. A typical Saturday night was six hours of video games and splitting a large cheese pizza with a friend or two. I learned to cook as a teenager, and I loved making sweets. I would make excuses, “Oh it’s okay if I eat six cookies, I spent the afternoon making them!” “I walk around school all day, it’s okay!” I know I was a mindless eater, too. I’d just power through a bag of potato chips without realizing. When I did notice myself doing it, I’d be horrified, because I wasn’t stupid. I had at least a vague idea of what constituted healthy eating compared to unhealthy eating, and combine that with an unhealthy lifestyle and, well...

... I think I was thirteen when I realized I was fat. I’d been a little high on the weight scale when I was younger, but I began to think of myself as fat around when I hit puberty. I tried to tell myself, “it’s puppy fat, you’re growing, you’ll grow into it,” but it kept never happening. I tried stupid things like sleeping on my front in hopes of crushing my chub back into my body, but then I got worried about crushing my breasts, too. I don’t remember being bullied specifically for being fat, but it was certainly a factor in my social alienation, combined with my general shyness and awkwardness. I also thought of myself as plain-looking, and being overweight didn’t help. I thought of myself as unlikable, unlovable, and being fat was a huge factor in it. I was the ugly duckling failing to be a swan, because I was fat.

My parents knew I was fat. My mom put me on diets and exercise plans, and I’d stick with it for a bit, but the diets were terrible and the exercise was hard. I have distinct memories of my dad stopping me in the middle of a pre-dinner snack and screaming at me, “When do you want me to stop you? Two hundred pounds? Three hundred pounds?” It wasn’t even just them. When I was still figuring out my sexuality and thought I was a lesbian, my friend told her mom as much, and her mom’s reaction was something along the lines of, “Does she think she’s not pretty enough to get a boyfriend?” (Retroactively, Tracey: who are you talking about who is or isn’t pretty when you fake-tan so much you look like a handbag?) This crushed my self-esteem even more. I was hopeless.

I held myself back from a lot. I wore clothes to disguise my weight, or that I thought did, instead of things I wanted to wear. I avoided pictures because I hated how I looked.

Even self-motivated diets failed. I was around 170 pounds in my senior year of high school, and I decided I wanted to get to 140, so I got a gym membership and started going after school and on weekends, combined with one of my mom’s diets. I lost weight, but when I did, it made my failing menstrual cycle go into overdrive. I began to have menstrual cramps three weeks into this attempt that were so bad I couldn’t move, breaking any good habits I’d been trying to form, and I quickly backslid into my old ways.

Here’s a terrible photograph of me from high school.

College was worse. College food is terrible, long hours spent holed up and being antisocial in my dorm room were not good choices, and even when I got a roommate I liked, we developed a mutual fried chicken habit. Getting out of my parents’ house was great for my mental health, but I made too many excuses for myself. “I walk around campus all day, it’s okay to get seconds.” “I don’t have KFC that much, and I’ll only have two pieces and a biscuit.” I tried to eat healthy at the school cafeteria, but I didn’t know better and had no control over what it all was. I just kept gaining, and I barely even noticed.

Here’s me on graduation day.

This was probably around my high. I wasn’t weighing myself at the time, but I was easily 210 lbs.

This was also around the time I met Mr. Blue, though. He took that picture. And he loved me exactly as I was.

After college, I struggled to find steady work, and worked retail jobs that at least got me moving, but my eating habits didn’t change, and when I wasn’t working, I was “too tired” to exercise. I had love, though, so I was at least feeling less unlovable. I even had days when I thought I was cute, encouraged by Mr. Blue. However, I did decide I needed to make a change.

My dad had challenged me, “When do you want me to stop you? Two hundred pounds? Three hundred pounds?” I’d resolved to stay under two hundred pounds.

I searched for hours to find a certain photograph, a photograph of myself from my godsister’s wedding. I was a bridesmaid, alongside her size 2 sister and skinny friend, and when we were shopping for bridesmaid’s dresses, they didn’t have anything I could actually put on because I was too big. I remember looking at myself in those pictures, next to two girls wearing the exact same dress, and saying, “Is that really what I look like?” I stepped on the scale, and it said 201.

No more.

At 201, which is my verifiable high, my body measurements were:

B: 48 W: 42 H: 47

This sucked as a cosplayer, too, because pattern sizes didn’t come that big. Sucked. My standard pants size was an 18, my standard shirts were an XL or 2X. That bridesmaid dress was a 22. It was time for a change.

Five years ago, I started this blog to keep track of my diet. It was just a common-sense thing, portion control, no seconds, healthy snacks only, cutting down meals. One egg instead of two, tomatoes instead of bacon. I also started to go to the gym again, four or five days a week. I’d let loose on weekends a little, but during the week, strict, nose to the grindstone. I learned ways to exercise that I could manage with my asthma, since I still had that emergency inhaler, and when the menstrual cramps came back, I fought through and kept going. (Getting on birth control helped.) As simple as it sounds, it worked. I dropped from 201 to 163.

Here’s me around 180:

And here I am on my wedding day in April 2015, around 165.

(I love that picture.)

However, after I got to 163, I hit a plateau. I kept rebounding to 165, then 163, then 165... and after I moved out of my parents’ house for good, the weight started to creep back on. Part of this can be blamed on getting a full-time desk job, since retail at least kept me moving during the day, but I admit, cooking for two rather than four (like I did when I cooked for the whole family in my parents’ home) made portion control harder.

June, 2016:

I kept trying, getting frustrated, struggling, the weight kept creeping back up, and it started to tank what self-esteem I had built up. It was November 2016, I weighed 177 at my doctor’s appointment, and she told me that despite nothing else being wrong with me, “Lose ten pounds. You’ll feel better.”

I’d been trying to lose that ten pounds for ten months since I’d hit that plateau. First, I raged about how unfair it all was, “I’m not unhealthy, I’m just overweight! And I know I’m overweight!” And of course I’d feel better after losing ten pounds, I felt terrible gaining ten pounds! The only thing losing that weight would really improve was my self-esteem.

November 2016 wasn’t a good time for anyone, though, really. I actually stewed on it for months.

Christmas, 2016:

It was late January 2017. Everything was terrible. 

Weight Watchers memberships were on sale.

I wanted to get control of something.

I’d been wanting to get control of something for years.

February 2017. I weighed 174. I decided to lose ten pounds.

And then ten more. Then ten more, ten more, and ten more after that. I promised myself a reward every ten pounds, and no cheating. My goal weight was 124. 

Here I am, February, 2017:

And yes, that was my favorite shirt.

You’ve read the journey since then. I followed the plan. I went from working out four days a week to every day, even if it’s just a half-hour walk. I’ve learned. I’ve grown.

May 2017:

I did the opposite of grow.

Late July 2017:

I had sort of a mini-goal, hit 135 by Otakon.

Did it.

Otakon 2017:

I had done a lot, but I wanted to hit that goal. I was plateauing again, but I wasn’t going to let it stop me.

I put my nose to the grindstone. I kept working. I kept learning. I fought every step of the way.

And now I did it.

I gained so much more than I lost, though. I empowered myself by fighting my way down. I’m so much more confident than I used to be. I smile more. I feel more powerful. I like taking pictures of myself now, and I feel like I can do what I want, dress how I want. I’m still powerless in a lot of ways, but it feels really good to say, “I did this. I decided to do it, and I did it.”

Because I did. Nobody else did it. I did it.

Today, 1/27/2018. Weighed in this morning, 124.

Shirt size, S. Pants size, 6.

B: 36 W: 28 H: 35

Oh, and I did finally get myself a -40 pound reward! (It was on clearance.)

It helps that I feel cute enough to dress the way I want now because... you guys... I’m really cute.

(Special thanks to Chanda for the thigh-highs, too <3)

And if you’re curious:

Apples to apples. That was my favorite shirt. I’m going to miss wearing it, but it’s huge on me. I think I’ll keep it for a gym shirt, though.

Now, the question is, since I hit my goal, where do I go from here?

I have an answer: I keep improving.

I can’t keep “dieting” forever, because diet isn’t something you do, it’s how you live. I live this way now. I eat the way I eat because it feels good to do so, and I keep exercising because exercising makes me feel strong. However, I’m going to transition into staying right around where I am now, weight-wise. I want to keep learning, finding the best way to stay around the weight I want to be at, and just live healthy.

And if my weight ever does creep back up, I’m confident I can beat it right back down, because I did it before and I can do it again.

I think I’ll keep journaling, since I know it helped me. I might just change the tag to “Blue changes her life.” Something like that, haha!

For those of you who have encouraged me, thank you. Thank you, thank you, thank you.

However, this isn’t the end of my path. I’ve got a long road ahead of me, and I’m going to come at it, walking strong and feeling better about myself than I ever have.

[javen-tiger]

I just saw Rouge One again and this time I have THOUGHTS (really really disorganised thoughts)

- First time I saw it I was all why does this man have vaporaters?? he clearly lives on a planet with sufficient water. I’m still confused tbh - obvs they’re there because they’re the universal signifier for Star Wars Farm, but in-universe maybe it’s more efficient to vaporate than to pipe it from somewhere - also I didn’t notice that those patches of green in front of his house were fields the first time I watched it - I wonder what the significance of having the confrontation in the field is?? Is it because the empire callously tramples over Galen’s life, over all he has struggled to create, just as they trample his hardwrought crops? Is it because this is a turning point, a new beginning in the story, just as life springs anew from the earth (from seeds planted before, oooo)?? - overall I really like this biome though. it’s nice. - I really liked how his wife is all ‘fuck you imps’ hell yeah this family is equally passionate about the rebellion, I like that - also Jyn’s stormtrooper toy :) we all need the baddies in our sets :))) - I get that Jyn had to watch to make sure the troopers left & probably couldn’t risk the noise of moving. but hell I would have gone straight down into that thing, FUCK - how did the stormtroopers not notice the rocks had eyes :/ - the rings of the planet at the start of this scene also look super cool. although lmao I didn’t notice the first time I saw it that there was an IMPERIAL SHUTTLE in the frame of the first shot, which made it kinda cool but v/ disorientating w/o anything to latch onto - have I mentioned that Imperial shuttles are fucjing awesome? I love imperial shuttles ok they’re the second best - a fun fact: the second time I wrote ‘shuttle’ I made the typo ‘shittle’ IMPERIAL SHITTLE EVERYONE

- ok I love love love the look of that trading outpost that’s in the rings of somewhere. I love settings that are ‘the rings of ____’ and are literally set on a bunch of rocks that make up the rings of a planet, it always looks really cool. could aslo be like the space version of islands - this time it’s even cooler because it’s two rocks joined together. although idk how that would work. super strong space infrastructure - Male Lead’s accent 👌 - tough desicion making, gotta shoot a dude, nasty, grit

- look, I’m trying to do this in vaguely chronological order but whatever - the first time I saw this I didn’t know Tarkin was CGI (i figured they found a cushing look-alike and gave him prosthetics or smth??) and I did not notice at all that he wasn’t real - this time I did know and yeah, I kinda did notice he was just a little little bit not real and I feel like that probably will/does bother some people. I did find myself devoting some of my attention in those scenes just to the fact that Tarkin was CGI - overall though I DO NOT GIVE A SHIT !!! :))))) - TARKIN IS IN THIS MOVIE and I don’t care if it had to look a weeny bit fake for that to happen. - I don’t really mind being remided of the fact that I’m watching a movie, a product of human effort, so little irrealisms don’t bother me too much tbh - Tarkin!! :))))

- Jedah city is really really beautiful - I didn’t notice the first time at all, but honestly it is so lovely - there’s this one shot where we see for just a second, the city peeking over it’s walls - it’s v/ lovely, like a white pearl within a rugged orange shell - I also love the star destroyer (3rd best spaceship) LOOMING over the entire city. Scale. - Does anyone else notice that most of the Star Wars spaceships are either 1) Fucking huge 2) carry like 10 people max or 3) fighters - where’s the inbetween ?? Star Destroyer and Millenium Falcon what goes between that. - also the Imperial Cargo ships look like turtles :) 🐢 - I love how the Jedi had a whole Kyber temple. Like they could’ve just gone and picked some up for their sabres but NO they must have a ~spiritual journey~ and almost die on fucking Ilum - IS THAT THE GUY WITH THE DEATH SENTENCE IN 12 SYSTEMS!? :D I didn’t even realise the first time - I love fanservice so muchhhhhh - I love that .5 second shot of SPACE MARX - I have a lot of questions about the Whills, specifically Donnie Yen - why hasn’t the empire killed Donnie Yen - HE’S JUST OUT THERE BRAZENLY USING THE FORCE ALL THE TIME WHAT THE FUCK - also did Jyn’s mum give her a Kyber necklace? I didn’t realise the first time that it was the same stuff. - well what’s the symbolism of that then. Donnie Yen said something but I forget what it was. Jyn carries at her breast that same thing which destroys worlds. Which her Father used to design a machine to destroy worlds. hmmm. - duplicity - or smth lel idk - i, for one, support Cyborg’s men violently attacking the Empire’s resource train - maybe don’t do it in such populated areas - ah, but the entire operation never leaves a populated area - tough desicion making, gotta shoot a dude, nasty, grit - to be real though, the first time I saw it I didn’t register the initial line that gave the reasoning for the Star Destroyer (Cyborg’s dudes have been attacking the supply chains or whatever) so when I first saw this I thought it was a bunch of random oppourtunist guys in it for the cash that comes w/ precious Kyber - but then they came arrested Male Lead and Jyn and Donnie Yen and Donnie Yen’s friend - is Donnie Yen’s friend also a whill? does this mean not all whills have the force? is that why the whills are still alive? wouldn’t the empire kill them anyway because they’re reminders of the Jedi? - or does Donnie’s friend have the force and has just lost faith - y'see we don’t know. this is part of a problem I have w/ the film that I’ll talk about at the end - i think i saw at least two (2) girls amongst Cyborg’s people. coulda been more though, I mean, aliens? face coverings? - someone else go have a discourse about how most of Cyborg’s dudes look like the popular conception of a terrorist - though that does change a bit once we get a closeup look at them at their base - I really like the look of the inside of Jedah city - ok, how has the Empire not found and killed Cyborg’s dudes? they live within shouting distance of Jedah city in this really obvious structure carved into the rocks - whatever - there’s a really good shot of a felled and buried Jedi statue earlier on, which is super cool - but also why the fuck are the Jedi buuilding giant statues of themselves aren’t they supposed to be 'austere’ or whatever - they had giant statues of themselves in their own temple so whatever. I guess this is from their other temple, the Kyber temple - I love how a centre of civilisation seems to have sprung up around the Jedi temple, as if they know the Jedi there will keep them safe - but the Jedi are gone and it became their doom that they ever had anything to do with them :))))))) - the effects of that horizon ripping are too damn good - also a robot saying 'there are shit odds’ before a dude trys to fly through a field of rapidly moving rocks? I know this formula 😏 - I take major issue with the Pilot going crazy, being crazy for one scene, and then not being crazy at all afterwards. - narratively it makes no sense to have that plot point in the first place if you aren’t going anywhere with it, and it seems a bit callous for him to just 'get better’

- I love how Tarkin is all 'i’m transferring command to me’ - WHITE IMPERIAL IS IN DANGER OF HIS BOSS TAKING THE CREDIT FOR HIS WORK - the empire is really just any other office workplace :) beaurocracy :) - wasn’t anakin’s dictatorship supposed to get rid of this :) remember that whole arc of clone wars tarkin and anakin spent bonding over a mutual predeliction towards fascism :) - it was a lie anakin :) depose the emperor :) - rule the universe with luke, as father and son :)

- I CAN’T BELEIVE ANAKIN LIVES ON A FUCKING LAVA PLANET IN A LAVA CASTLE WITH A LAVA WATERFALL - fuck will his drama never end - exactly how much of his time does Darth spend in his glorified bacta tank? - that shot where darth vader’s shadow is revealed, swallowing White Imperial with it’s sheer size is mint 👌👌 good film making hot damn 👌👌 establish those power relations nice - DON’T CHOKE ON YOUR ASPIRATIONS - the sickest double pun ever know to man

- soundtrack: there is one theme in the soundtrack that I really like until the next note happens - it’s the beggining and swell of the music when the title comes on - I like it until the next note after the swell, which never does it for me at any point in the film

- I really enjoy the fact that Mon Mothma exists - she is Good - also Bail Organa

- ok so they piss off to the Rainy Planet which I think is a really cool biome. It’s nice, my mum hated it with a passion, we had to drive home in the dark while it was raining :) - I actually kinda love how this entire act of the movie is a colossal clusterfuck - and Male Lead has to not shoot the guy! (ok i don’t really see the entire logic behind kiling him since the Death Star is already finished, but … whatever?) - anyway … tough desicion making, gotta shoot a dude, nasty, grit - why is White Imperial shooting the scientists outside in the rain, like, surely it’s more pleasant inside mate - I really love the massive military mistake that happens. The Rebellion ain’t perfect (tough desicion making, gotta shoot a dude, nasty, grit). - I also like this between Jyn and Male Lead (wherein Male Lead gets some character :)) - before there was some stuff between Cyborg and Jyn about 'the cause’ and Jyn is all 'it’s not a problem if you don’t look up’ which is clearly the Star Wars version of “Those who do not move, do not notice their chains.” which is a Rosa Luxemburg quote (bless Rosa btw) - It’s an understandable position, but a very frustrating one - she says that stuff about having 'the luxury to be political’ which reminds be of ()()()THE PYRAMID OF NEED()()() I was gonna fill this in later but honestly I can’t be bothered, basically it’s the idea that only once you can fulfill your base needs like food and shelter can you even begin to think about other shit - anyway I really like Male Lead’s stuff about 'being in this fight since he was six years old’ and 'you’re not the only one who lost everything, some of us just decided to do something about it’ HELL YEAh fight that evil empire. too right you’re right stop being an apolitcal sook Jyn - what’s Male Lead’s name I feel suddenly fond of him. It’s Cassian, nice. - anyway Jyn takes that to heart, bless her (also motivated by Dad I guess), and delivers her nice 'Rebellions are built on Hope’ bit. Which lmao reminds me of this quote about rebellions being built on despair, actually:

- (look how fucked my dash is i don’t understand) - anyway there’s division in the Rebellion, some of them (the guy from sherlock … anderson?) are scared it’s understandable, it’s good, it’s tough desicion making, gotta shoot a dude, nasty, grit 

- SOME REBELS REBEL and thus begins the third act of the movie - ok, the third act is the best, the absolute best, it’s tense and holds your attention like nothing else and time isn’t real anymore and the first two acts feel like they almost never happened, like they’re some faint background noise - really I think part of that 'faint background noise’ is that the 'tough desicion making, gotta shoot a dude, nasty, grit’ theme about the Rebellion being flawed, just … goes away. besides the initial rebelion of rebels which kicks the action going the theme disappears - maybe it’s there in spirit since it was some tough desicion making, gotta shoot a dude, nasty, grit, that actually kickstarted the act.. idk it couldn’t really be there for all of act 3 to happen properly and act 3 is the best so whatever. I guess maybe it’s also there a bit when Cassian shoots White Imperial . maybe - it’s also really noticable in the bit where Cassian brings some guys over to help that they are all dudes. - Like I give Star Wars a pass on this mostly actually because they gotta maintain continuity with the seventies, it’s actually quite nice how they end up adding in a bunch of lady pilots etc. (esp. since they cut lady pilots from Return of the Jedi :/ thanks 1983) - idk I just … that was my immediate thought, maybe I’m being silly - even though I give Star Wars a pass I also wouldn’t have minded if they did just make half the rebels women, continuity be damned, I don’t mind being reminded that yes, I am watching a movie ( as i mentioned before).

- Scarrif is such a cool environment. Ok I love it. I also love the shield thing!!! - mind, when the rebels were running through the palms all the palm trees were in straight lines … like … did the empire plant them? - did the empire see some scraggly rainforest and say WE MUST BRING ORDER TO THE GALAXY - or is the empire making money off palm oil on the side??

- NOOO BAIL! DON’T GO BACK TO ALDERAAN?? - when did he say stuff about Obi-Wan and Leia? idk if that was before or what but I dug that. - it was probably a bit before when Mon Mothma (best) said 'war is inevatable’ - ok on that note idk what those other systems were thinking … like … are you gonna overthrow the empire peacefully?

- Except the empire ownes their arses  - The Empire: *commits genocide* Anderson: I respectfully disagree with your opinion on Lasats

- anyway, back to rebelling. Jyn’s Imperial disguise is the number one (1) costume the imps have. it is the best uniform. get and maintain that job for that uniform kids. also I wanna know what exactly it is she’s got on her back. - Cassian is v/ scruffy round the face and I’m surprised none of the othter Imps noticed that he was not regulation. I assume that’s not regulation anyway none of the other officers have face hair - I’m surprised noone noticed it was a different Inspector who went in than came out … but … whatever - ON THE TOPIC OF UNIFORMS - THEY STILL HAVE BOMBADIER HATS IN SPACE - i’m fucking laughing - 'I have an inside job pressing the button that makes the death star fire but i still wear this RIDICULOUS HELMET’ - is this one of those stupid military traditions that just keeps going … like … it’d make sense if you were firing artillery outside I guess?? and recieving fire?? but do they not have an alternative uniform for INSIDE JOBS - both the Rebels and the Empire are guilty of this

- Those explosions were cool as - also i’ve seen this meme too many times:

- idk what else to say other than everything looked really cool. like it was fucking awesome and tense, especially when the Mon Calimari dude showed up

- X-Wings are the best thing. I love X-Wings. I used to have this old X-Wing toy from 197-whatever that I played with at Christmas (it was my dad’s really, and up in Brisbane). Fuck I love X-Wings. Best Plane - I would not get in an X-Wing though. If you get hit in space YOU DIE - A PARACHUTE WILL NOT SAVE YOU YOU WILL DIE fuck that noise - in the background you can hear ’..aptain Antillies’ - WEDGE WEDGE WEDGE WEDGE - did you know I have to start watching Rebels again because I heard Wedge is in it? like once? - unless captain Antillies of Leia’s ship isn’t actually the same person as Wedge, which he wouldn’t be because Vader captured that ship - i’m disappointed - is Antillies a common name in this universe? - it’s cool how Red 5 dies. now Luke can join up :) - that;s a fucked up thing to say whhy am i like this - I looked over at my dad during this bit and he had his hands to his face bless him he was havin’ a good time

- I felt sad when Sassbot died. which is remarkable considering - I did not feel that sad when anyone else died - because most the characters that aren’t Jyn and are in the 'gang’ feel v/ flat to me - like we don’t know much about them or why they’re doing this at all. We don’t even know really why the Pilot defected (Jyn’s dad … spoke to him?) and that’s basically his entire character?? Pilot is kinda sweet and earnest and defected. ok… i guess he’s endearing but I don’t really have a sound motivation here to make me attatched to him - Donnie Yen I guess is motivated because The Force. I felt like he was in this movie just so The Force would be in it. I guess Donnie Yen’s friend goes along because Donnie Yen does and they love each other. I’ll grant that friendship was sold super well, but otherwise who/why are they? Donnie was a Whill who still believes in the force, his friend is a bit disillusioned to all that. This is their character. - THey did do Donnie’s death pretty well though, even though I wasn’t that sad about it I guess. He puts total faith in the Force and if the Force wants him to pull that lever then let it be so, if the force wants him to die then let it be so. - the weird thing is that when Donnie goes out all the rebels are pinned down by super heavy fire, but when his friend runs out he has a long grieving sequence where … he just … doesn’t get shot - no offense but I don’t think the Stormtroopers respect that he is grieving - sometimes I feel bad for stormtroopers bcs they’re just doing their thing having mundane conversations and then get shot. but maybe they shouldn’t have become imps. but maybe they’re conscripts?? tough desicion making, gotta shoot a dude, nasty, grit - Cassian’s a bit better than the others on this front (ignore stormtrooper digression) but still … - eeh maybe i’m just pulling this outta my arse. I did find the characters had a bit more depth the second time through since I paid closer attention to dialouge etc. though.

- I’m genuinely surpriesed the top of the transmissions tower had a railing on the sticky-outy bit. I’m entirely unsurprised it had an unecessary sticky-outy bit. - I’m deeply appreciative of the fact that Jyn and Cassian never kiss, that they just hug it out. Fuck you do not know how much I am glad for that. - bit weirded out by the fact that the Death Star apparently got shitter at aiming?

- the move with the Hammerhead was super cool, but do you know what was cooler? everything involving that transmission - visuals: ace - and just the miraculous hand passing - DARTH VADER HALLWAY SCENE - I was giddy throughout this scene does such a terrific job of being tense and terrifing. - Darth Vader ignites his Sabre and appears in from the dark just slightly further forward than you expected him and damn if that isn’t a) unsettling and b) a wild assertion of power then I don’t know what it is - dude flat out puts a dude ON THE CEILING nice. - “help us help us” changing to “take it take it” is so amazing and desparate as these Rebels realise that nothing, not even their silly bombadier hats, is getting them out of this - and then the guy who took the transmission through the door just barely escapes too. fuck. - AND THEN LEIA GETS IT - LEIA LEIA LEIA - I DID know Leia was CGI the first time but honestly it’s barely noticeable, probably since she has a much smoother face? and fewer lines? - whatever she’s beautiful - I’m sure you’ve seen plenty of posts about the start of ANH in the light of this, how Leia is SO OBVIOUSLY BULSHITTING VADER with her 'im on a mission for the imperial senate’ - reminds me of that scene in Chronicles of Yilmaz VIII: The Outlaw: The Fall of Yilmaz, when Tobian says 'You can’t prove shit’ to the shopkeeper who just accused him of stealing and had security footage of it

- anyway how cool is it that two A New Hope patches have been filled - Leia was at Tatooine for a reason (Obi-Wan) and the Death Star had a glaringly stupid weakness becuase they made a GUY WHO DIDN’T WANNA DO IT MAKE IT - also lmao the empire blew up it’s own records wtf were you thinking Tarkin have fun functioning properly now