God > Hurley

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.

Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me. Psalm 23:4

This week, a co-worker had an extremely bad allergic reaction. Her body broke out in hives all over and she was extremely itchy and uncomfortable. She had even cried about it, out of frustration and fear. Somewhere in the middle of her describing her experience with it all, she mentioned that if she had to live the rest of her life that way, she wouldn't. I froze. 

Anxiety in a man's heart weighs him down, but a good word makes him glad. Proverbs 12:25 I once read somewhere that HS is not fatal, except in cases of suicide. While I don't personally know anyone who has committed suicide as a result of not able to cope with the disease, I can totally understand not wanting to live this way. HS can be so awful. Yes, it does get THAT bad. I can understand wanting it all to end. Actually, I've been there. Maybe my co-worker didn't mean it, but I could relate to it all. All of the symptoms, all of the emotions, and sadly, even the not wanting to live part. But you, O Lord, are a shield about me, my glory, and the lifter of my head. Psalm 3:3 While I have never felt the urge to kill myself, I have had thoughts of wanting to die or be killed because I didn't want to live with the pain & shame of HS. I have thought to myself - if this is how my life is going to be, I don't want it. I have wished that a car would come out of no where and hit mine, front driver side - quick and dirty. Of course, I never told anyone I've felt this way. These are the kinds of thoughts that people keep to themselves. There's a stigma around people that have these sort of feelings and God forbid we be considered one of them, right? But we are them. It's a fact: our disease makes us susceptible to depression and wanting to die. That's okay because these thoughts and feelings can be conquered and there is a beautiful testimony to be shared at the end of it all. Consider it a great joy, my brothers and sisters, whenever you experience various trials, because you know that the testing of your faith produces endurance. And let endurance have its full effect, so that you may be mature and complete, lacking nothing. James 1:2-4 

It may be easier said than done, but one of the most important things to remember is that you are not alone. Of course, you have family and friends that love and care for you. Sometimes, though, you just want to know there are others out there who can truly understand what it is you're feeling. There is a large online community of HS sufferers who can absolutely understand and are always there. And if that isn't enough for you, you can step outside that community and find others; those who suffer from other autoimmune diseases or struggle with depression, who you will be able to relate to also. You may even find some comfort in personal accounts and testimonies recorded in the Bible. The Bible is filled with stories of people who waited on God and were not disappointed. There's Job, who was definitely depressed after losing everything but never, ever lost his faith, and was eventually restored fully. There's the people of Israel who wandered in the wilderness for 40 years, but continued to follow the men God placed before them, before finally reaching the land that was promised to them. God made Sarah laugh with joy when he gave her a child in her old age, after for most of her life she believed and grieved that she was barren and could not have children. You are not alone. Trust God. You will not be put to shame. I have said these things to you, that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world. John 16:33

We become depressed not because we have been defeated or dominated by the giant we face, but when we are overwhelmed and controlled by negative thoughts. We know the Word of God says "many are the afflictions of the righteous, but the LORD delivers him out of them all" (Psalm 34:19), but we also welcome thoughts and lies from the enemy, telling us things will never get better and we will suffer forever. The devil wants to steal and control of all your thoughts and to keep you in a state of depression. Nurture your thoughts of God being bigger and better than your problems. Feed your appetite for the Word of God.  The mind is very powerful. Encourage your hope. Increase your praise. Strengthen your faith. "Whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things (Philippians 4:8). It's true - one thought of your situation can enslave you and send you down a rabbit hole of depressive thoughts, but it's also true that one thought of Jesus, his goodness, his faithfulness, his grace, his mercy, his love, can lift you out of the pit. It takes strategy, discipline and practice, but when you catch the enemy stealing control of your thoughts, make him pay you back, sevenfold (Proverbs 6:30-31).

And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself perfect you, establish you, strengthen you and settle you. 1 Peter 5:10

When I look back at my old social media posts, all I can see is how happy I used to be. I could see and remember how much joy I took in putting myself together and posing for a picture. I could see how I used to enjoy being in the company of friends and family, just eating out or shopping. It's depressing realizing that I no longer find as much pleasure in these simple things that I used to love.

HS has stolen a lot from me. I'm tearing up now just thinking about it. HS is an 'invisible disease', in which sufferers don't 'look sick' to non-sufferers. Most of the people around us will be shocked to learn we even have a disease. But really, this disease affects us daily, in more ways than we could count on our fingers, and probably in more ways than we even know.

HS has tried to steal my

My Body: This is probably the most obvious way HS attacks us. It changes our skin, making it displeasing to the eye, but even worse, it causes unbearable and excruciating pain.

My Esteem and Confidence: With open wounds and disfigured skin, it's hard to feel confident and beautiful. As a woman, loving our bodies is already a difficult task. HS makes it much harder.

My Style: In order to hide scars and wounds, I am unable to wear articles of clothing I used to love or would love to try. As an example, I do not buy or wear anything sleeveless, and definitely nothing white.

My Happiness: Depression is not an uncommon symptom of HS. It just makes me sad. Really sad. I am always on the verge of tears. One small offence, or sometimes even just a really good hug, and you'll see the water works from me. There's just so much bottled up sadness, that one small shake will cause me to explode. It's hard to explain, but also, do I really have to explain?

My Strength & Energy: Fighting disease is hard. It takes a lot out of you, mentally and physically. There are mornings that I am truly, truly, exhausted after just taking a shower and barely getting dressed - and all I want to do is crawl back into bed and get some rest. Such simple tasks can take the life out of you because your body is doing so much work just to keep you on your feet.

My Comfort: Even if I am somehow granted a few minutes free from pain, I am always uncomfortable. I always feel some sort of pressure, or irritating rubbing, or burning. This disease doesn't really let you forget that it's there.

My Relationships: It's hard to maintain relationships with someone who doesn't fully understand the extent in which your disease affects you. We're often just not in the mood, or physically just can't, and hate to have to pull out the 'I'm in pain/I'm just sad' excuse, every time. In intimate relationships, just the thought of having to show our scars to a love interest is terrifying, and may even cause us to avoid dating at all.

My Fun: It's hard to do anything fun or truly have a good time when you're in pain or extremely uncomfortable.

My Hopes & Dreams: Hopes and dreams that I once had for myself have simply just died somewhere inside of me while I have been busy trying to figure out this disease and how to manage it. Coping with or trying to cure yourself of HS becomes the number one thing in your life and you really don't have much time to dream or hope for anything else.

My Mind: As mentioned above, HS doesn't really give you a chance to forget it's there. It's on my mind all the time. It controls my decisions. It controls my schedule. It controls where I go, and what I do. I have honestly felt like I was losing my mind at times - not being able to think about anything else but the pain and frustrations that's come with such an ugly disease.

My Sleep: Of course, it's difficult to sleep while experiencing pain. Depending on the location of your flare, it could be impossible to get into a comfortable position. I've spent nights just scratching or picking at irritable skin that just won't let me get any rest. Oh, and lets not forget the nights we wake up due to completely soiled pajamas and bed sheets from a large abscess that has finally erupted - half thankful and half annoyed.

Thankfully, God has promised to return everything that was ever taken from us. He will restore. He will recompense. Not only will He return what was lost, He will multiply it. It's a truth that we must believe and put hope in. It's a truth that should give us great joy. We do not have to accept sickness. Restoration is God's will for us. You will recover. He will restore.

But I will restore you to health and heal your wounds,’ declares the Lord, ‘because you are called an outcast, Zion for whom no one cares.’ Jeremiah 30:17

Instead of your shame you will receive a double portion, and instead of disgrace you will rejoice in your inheritance. And so you will inherit a double portion in your land, and everlasting joy will be yours. Isaiah 61:7

When the fig tree will not blossom, there is no fruit on the vine, and the fields yield nothing, I will still rejoice. God is my strength. Habakkuk 3:17-19

Although HS may sometimes rob us of happiness, It's important that we remain joyful. Joy comes from what we know: that we have a God of restoration and that He is for us. Without joy when things are painful, uncomfortable or just plain bad, we become prideful - challenging and questioning God. If you've ever read the book of Job, you know that pride interferes with restoration. We must humble ourselves before God if we want to be restored. Let me explain:

In the book of Job, God allows Satan to test Job by inflicting a large amount of suffering. Fun fact: one infliction Job experienced was boils all over his body. Of course, the disease didn't have a name back then; it may not have even existed back then, but to relate to Job a little better, I'd

like to think he had HS. As a God-fearing man, at first, Job continues to praise God. He explains, should we accept only blessings from God and not adversity? But as his suffering continues, he begins to cry out to God in anger, demanding an explanation for his terrible suffering. He eventually becomes extremely prideful - pleading innocence, listing all the good he has done in his life, and even accusing God of doing wrong by punishing the righteous just as he punishes the sinful, and by allowing evil doers to prosper while good people suffer.

God responds to Job and effectively puts Job in his place. God is God. He is creator of everything. He decides what is wrong and what is right.  He has infinite power and infinite knowledge while we are limited by the constraints of human understanding. We are in no position to question or challenge God. He does what He pleases, and it is always right. “It is impossible for God to do wrong, and for the Almighty to act unjustly” (Job 34:10). Returning to this realization, Job humbles himself before God, and repents. It is only after this that God restores Job's life by granting him twice as many possessions as he had before, more children, and long life.

Another important lesson in this book is that while Job's suffering was challenging and emotional, he never lost faith in God. Yes, he was loud and graphic and brutally honest about his frustrations and his depression. He was being real. It's okay for us to groan in pain, and cry in our devastation. God already knows how we feel, and so we don't have to hide it. While we acknowledge and express how we feel, what's important is that we stand on what we know: that our Redeemer lives (Job 19:25) and he will rescue us. Believe and rejoice! The faith that God will heal me has been crucial in preventing me from going down some dangerous and destructive life pathways. The joy of the Lord has been my strength. If you're missing this, ask God to restore this to you, first. Having joy changes everything - and when this is restored, everything else will be restored  to you, also.

Create in me a pure heart, O God, and renew a steadfast spirit within me. Do not cast me from your presence or take your Holy Spirit from me. Restore to me the joy of your salvation and grant me a willing spirit, to sustain me. Psalm 51:10-12

But without faith it is impossible to please Him, for he who comes to God must believe that He is, and that He is a rewarder of those who diligently seek Him. Hebrews 11:6

In Luke 17:5, the apostles said something to Jesus I often include in my prayers. They said, "Lord, increase our faith."He responded by explaining that even if they only have faith the size of a mustard seed, they could command a tree to be uprooted and it would be so. That is so little faith require of us, considering his love, goodness, mercy and faithfulness towards us can only be measured by something much, much, larger than seeds. With all that God gifts to us, its good to know we can please Him by exercising our faith. It pleases Him to know that we believe in Him, even though we can't see Him. Faith is a gift from God that can be strengthened by studying His works and words. Read your Bible, and your faith will grow!

So then faith comes by hearing, and hearing by the word of God. Romans 10:17

“Though you have not seen him, you love him; and even though you do not see him now, you believe in him and are filled with an inexpressible and glorious joy, for you are receiving the goal of your faith, the salvation of your souls.”1 Peter 1:8-9

Living with HS, there are times when my faith is extremely weak while worry and fear grow strong and dominant in my mind. There are times I want to give up and believe things will ever get better. I can convince myself that this disease will paralyze me and there is no point in looking forward to the future. Instead of believing God has a plan, a great plan, an abundant plan, for my life, there are times when let worry take control over my thoughts and I begin to stress about how this disease will affect my life. Will the disease spread to other areas? Will I have to be on medications forever? Will I have to have surgery? How many surgeries? Will I recover okay? How long will it take to recover? What will the scars look like? How long will I be out of work? How will I make money? Will my kids have to deal with this, too? However, it's never long before I'm reminded, by God Himself, who holds my future. He tells me not to worry, and that when I am weak, then I am strong. Thankfully, even when our faith is frail, it's enough.

Who of you by worrying can add a single hour to your life? Since you cannot do this very little thing, why do you worry about the rest? Consider how the wild flowers grow. They do not labor or spin. Yet I tell you, not even Solomon in all his splendor was dressed like one of these. If that is how God clothes the grass of the field, which is here today, and tomorrow is thrown into the fire, how much more will he clothe you—you of little faith! And do not set your heart on what you will eat or drink; do not worry about it. For the pagan world runs after all such things, and your Father knows that you need them. But seek his kingdom, and these things will be given to you as well. Luke 12:25-31

But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong. 2 Corinthians 12:9-11

Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything. James 1:2-4

There are many instances of Jesus healing the sick instantly, because of their faith. There is the man with leprosy in Matthew 8, the blind beggar in Luke 18, and the woman with the issue of blood in Luke 8, just to name a few. One of my favorites can be found in Matthew 8, where a man approached Jesus, just like many had done before, and asked him to heal his servant who was laying paralyzed at his home. When Jesus suggests visiting his home to perform the miracle, the man humbly insisted that his home wasn't worthy enough to have Jesus enter it. Instead, he requested of His Lord to "just say the word, and my servant will be healed. "When Jesus heard this, he was amazed and said to those following him, 'Truly I tell you, I have not found anyone in Israel with such great faith'" (Matthew 8:10). I love that this man was able to amaze Jesus with the amount of faith he put in Him. He believed with all his heart that Jesus did not need to come over, or lay hands, or do anything fancy in order for his servant to be healed. He believed that all he needed was for Jesus to say it and it would be so. That kind of faith shocked even Jesus, himself. Needless to say, the man's great faith was rewarded accordingly, with the instant healing of his servant at home.

I don't know about you, but I want to impress God with my faith, too. I want to offer him faith that is better and bigger than the basic, minimum, mustard seed. God amazes me with His great love and faithfulness everyday and although I could never do it as well as God does, I just want do the same in return, to the best of my ability. Jesus made it clear: Even the smallest amount of faith is enough. I'm going to strive to give Him much more than that. I will be confident in my belief that my world is safe in His hands and that he will heal me and give me hope and an abundant future. I am going to exercise my faith daily, not because more faith means more rewards, but simply because it pleases Him.

And so, Lord, where do I put my hope? My only hope is in You. Psalm 39:7

The main reason I haven't shared my story until now is simple. I've been ashamed. Now, I know what you're thinking: having a disease is nothing to be ashamed of. I know that. In fact, that's the exact advice I would give to anybody that finds themselves in this position. I'm sure I'm not alone in saying this: not feeling ashamed about suffering from HS is easier said than done.

It's the reason why so many cases are not diagnosed for years. It's the reason why there is so little awareness. It's the reason we don't want to go to the doctor. It's the reason we don't wear certain things, do certain activities, or go certain places. It's the reason why our closest friends and even family members don't know what we are dealing with on a daily basis.

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a·shamed

/əˈSHāmd/ adjective embarrassed or guilty because of one's actions, characteristics, or associations. reluctant to do something through fear of embarrassment or humiliation.

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That's what it comes down to. It's fear. It's paralyzing fear that causes us not to try, not to go, not to do, not to be. It's a fear even more paralyzing than the disease itself. And why are we so ashamed? Why are we so afraid? The reasons are countless, a little hard to explain and maybe difficult to understand to someone outside our community. For this reason, at least for me, I'd prefer to just pretend I don't have an issue; pretend that it's not bothering or affecting me. I'm ashamed: afraid of the embarrassment and afraid of being judged.

Let's be honest. Having HS is embarrassing. Having HS causes me to feel ashamed and embarrassed when drainage seeps through my clothing and onto the furniture I've been seated on, or when it causes me to walk or sit or even stand awkwardly. I feel ashamed every time I catch a glimpse of my soiled clothing, hoping nobody else notices. I'm embarassed at how bad my armpits look. To add the embarrassment, there is the judgement from others. There are those who will never even consider it an actual disease, and will assume you have bad hygiene or bad habits. Others will believe you haven't done enough to rid or cure yourself of the symptoms. I'm sure there are other judgments people have projected on me or others that I don't even know about.

It seems those who don't judge, pity - which causes less embarrassment, but embarrassment just the same. Receiving pity is another reason I've been careful on how much to share about my health. If I speak about it too much, it may come off as whining or begging for attention. Personally, I hate attention. I get absolutely no pleasure from people feeling bad for me. As mentioned before, it actually kind of embarrasses me. I really appreciate that others can understand that this disease really, really sucks, but I'd also like them to know I still have more to smile about than to cry about. I'm still blessed and highly favored. My help still comes from the LORD, the maker of heaven and Earth.

I'm working on not feeling so ashamed. After all, this is not something I have brought upon myself. You are witnessing me take my first steps by creating this blog. I've been treating my HS as if it's a dirty secret, something I have to hide. No wonder I feel so ashamed! On top of that, I've given myself extra work by pretending to be completely healthy and able when I simply am not. I believe if I'm honest about what I'm dealing with, with as many people as possible, I won't have to feel so ashamed and pretend all the time. With this blog, I plan to share my story - no more hiding, and to inspire others to do so also. If we all step out and share our experiences, spread awareness, maybe we can diminish some of the judgement and ignorance that surrounds our disease.

With that said, recall Marianne Williamson's poem, Our Deepest Fear:

“Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness that most frightens us. We ask ourselves, Who am I to be brilliant, gorgeous, talented, fabulous? Actually, who are you not to be? You are a child of God. Your playing small does not serve the world. There is nothing enlightened about shrinking so that other people won't feel insecure around you. We are all meant to shine, as children do. We were born to make manifest the glory of God that is within us. It's not just in some of us; it's in everyone. And as we let our own light shine, we unconsciously give other people permission to do the same. As we are liberated from our own fear, our presence automatically liberates others.”

My greatest comfort comes from the Word of God. It's full of promises, encouragement and comfort. God is not a man that he should lie. When feelings of shame fall on you, be reminded:

You are beautiful. 

You are altogether beautiful, my darling; there is no flaw in you. (Sol. 4:7)

I will praise you because I am fearfully and wonderfully made. Your works are wonderful, I know that full well. (Ps. 139.14) You are strong.

The Lord is my strength and my shield. (Ps. 28:7)

I can do all things through Him who gives me strength. (Philippians 4:13)

God is our refuge and strength, an ever present help in trouble. (Ps. 46:1)

You are valuable. 

You are not your own, for you were bought with a price. (1 Cor. 6:20)

Are not five sparrows sold for two pennies? And not one of them is forgotten before God. Why, even the hairs of your head are all numbered. Fear not; you are of more value than many sparrows. (Luke 12:6-7)

You are beloved. 

God is within her, she will not fall; God will help her at break of day. (Ps. 46:5)

Greater love has no one than this: to lay down one's life for one's friends. (John 15:13)

But God shows his love for us in that while we were still sinners, Christ died for us. (Romans 5:8)

You are blessed.

And my God will meet all your needs according to the riches of his glory in Jesus Christ (Philippians 4:19)

And God is able to bless you abundantly, so that in all things, at all times, having all that you need, you will abound in every good work. (2 Corinthians 9:8)