I went to the Infectious Disease specialist, Dr. Kumar, and he noticed right away how knowledgeable I was, and how much research I had done on my own. In a way, I think that helped him communicate with me. He was showing me scholarly articles that I had already read on my own to better explain my situation. Jarrod and I both agreed it would have been a bit more encouraging if he had just been able to tell us the information rather than site articles, though.
Between Dr. Kumar, Dr. Coster, and another doctor, we worked up a plan to get rid of the infection the safest, hopefully fastest way. But it won’t be pretty: After showing improvement with the 2 antibiotics, it was decided to bring it down to one for safety, removing the Cipro. I continue to see gradual improvement with just the one, and it has been a week since it was changed. Next Thursday (a week from today), Dr. Coster will surgically open and debride the infection, removing all fluids and infected tissue, and then leaving the wound open to heal from the inside out. This is to eliminate the environment where the bacteria are thriving, and make the single antibiotic as effective as possible. (Don’t worry, I won’t post photos.) Once the open wound has healed entirely, and the infection is 100% healed as well, Dr. Coster will then surgically remove the scar tissue and make my breast cosmetically correct again.
My estimated treatment will be approximately 6 months long. I’m hoping though, with the slight improvement I’ve already gotten, that I won’t have to be on meds that long. I hope it heals faster than that.
Another piece of this puzzle won’t be figured out for a few weeks yet either. We know I have the rare atypical mycobacteria infection, but we don’t know which strain or which medication it is most sensitive to. Those tests take about 6 weeks to get results back. Once those results are back, perhaps I can be on the one antibiotic that will knock this out the fastest… still hoping for a quicker recovery.
But I know these things take time. I’m trying to keep myself out of the intensive research and anxiety, keep my eyes on the light at the end of the tunnel and the wonderful man supporting me, and remember this too shall pass. I have a great team I’m working with, and this will get better.
As most everyone knows by now, I had a breast reduction on September 1, 2017. It was a pretty drastic reduction, but was deemed medically necessary because of the pain it was causing my back, shoulders, neck, skin, etc. I was excited to get it done! The surgeon, Dr. Coster, assured me he wouldn’t go too small, since I felt it was a part of my identity. However, immediately after the surgery I was extremely unhappy with the results. The pain from having large breasts was gone right away, but I felt he went WAY too small. He again assured me that with healing, they would settle and be exactly what I wanted. I had no choice but to take his word for it. As the settling of my breast tissue progressed, it felt lumpy and bumpy and sometimes painful. But overall, it wasn’t a terrible process. I must say though, still not too thrilled with how small he went, I would have been happy with about another cup size larger. But there’s really nothing to be done about that now but accept it and move on.
Fast forward to 6 months later, in March of this year. There was a painful lump about maybe the size of a large marble that was not going away in the top part of my right breast. I made an appointment and talked to Dr. Coster about it, and he told me it was still settling breast tissue, and not to worry too much about it. But it didn’t go away. And it continued to be painful.
In April I had an unrelated illness, a tonsil infection, for which I was given 3 weeks of antibiotics and steroids for the inflammation. To my surprise, the lump in my breast went away as the tonsil infection went away. I really didn’t think much of it until the steroids and antibiotics were done. About a week later, the lump in my breast came back. I made an appointment, and in the 4-5 days it took until that appointment date, the lump quadrupled in size and became much more painful.
Still, when I saw the Dr. Coster toward the beginning of May, he told me it was just settling breast tissue, and I explained what happened with the course of treatment I had for my tonsil and stressed the pain and concern I had. So he gave me some stronger antibiotics. They did no good, so after a week I was prescribed the same antibiotics I had been on for my tonsil. So another week later, the antibiotics had not worked, and he did an ultrasound. He found a pocket of fluid, and aspirated some of it with a needle (NO fun at all, I say!!). He sent me home with more of the same antibiotic and low-dose steroids. It started to do a little better with the steroids, but as the dose decreased, the swelling increased again. No relief.
1 day before my next appointment I got a call from the nurse saying the fluid they aspirated had been sent to the lab and cultured. The nurse said the result was a super-rare bacteria in the same family as Tuberculosis. She said to keep my appointment and the surgeon would explain in more detail and discuss treatments during that appointment. So yeah, if you know me, you know I want as much information as possible for whatever new thing happens to me or a loved one, medically. Science and medicine fascinate me. So I scoured the internet for information about TB-type infections of adipose tissue (fat tissue). I found a large number of options of what the infection could be, looked up case studies, and went to bed that night knowing this would be a very long process.
The next day at my appointment, Dr. Coster told me this was a non-tuberculosis atypical mycobacterial infection. That is basically a long way of saying this is a very, very stubborn and medicine-resistant infection that will take anywhere from 3 to 12 months or more to heal with the proper antibiotics and the potential for surgery to remove infected tissue. Seems it has a slightly rising occurrence in post-surgical patients, but usually with breast augmentation rather than reduction. No known cause other than just environmental exposure. He had only ever seen one other case in his entire career, and he’s a pretty experienced surgeon. He also said NO PREGNANCIES because nothing about the treatment is pregnancy-safe. He gave me two antibiotics which have some pretty severe possible side effects – Ciprofloxacin and Clarithromycin, and this note.
This was on Wednesday, May 30th. Jarrod and I had been actively trying to get pregnant, so there was a very small chance that I could have conceived during the 2 weeks since his vasectomy reversal. I took an early-detection pregnancy test that day, being only a couple days from my expected period, and it was very clearly and plainly negative. So I started taking both medications immediately.
As of today, 6 days later, there has been no improvement. The lump is a little bigger, and now takes up about 1/3 of my entire breast. It is painful, and I can no longer go without wearing a bra to bed, which is miserable for me. My skin is discolored where the lump is, and without the medical knowledge of this possibility, I am concerned this infection will come through the skin.
I have an appointment with a specialist at the Center for Infectious Disease tomorrow (Wednesday), and hopefully he will have answers as to what medications will certainly work. Hopefully the lab culture results have come back to show what medications this bacteria is sensitive to, and we can hit it hard and kill it! At this point I am open to anything, even surgical, to get this gone as fast as possible. Neither Jarrod nor I want to wait an entire year or longer to get pregnant, considering our ages and the financial and emotional investments we’ve made in our reversal surgeries. But I know being healthy first should be my first priority. I just want this bacteria out of my body!!! It’s not welcome here, dammit!
It is also very important to mention here that Jarrod has been amazing through this all. In our 9 months together, he has been there for me through my tummy tuck and breast reduction, a couple nasty tonsil infections, of course my tubal reversal surgery, and now this. Seems I just can’t stay healthy these days. But he is absolutely amazing, supportive, helpful, and always listens to my rants and anxieties, and puts up with my ridiculous amount of intensive research that is admittedly entirely excessive. He’s the absolute best husband and best friend, and I don’t know what I would do without him by my side.
To be continued in “Part 2” once I have some more answers, and perhaps some progress in the right direction…..
Several months ago, I got a perm. I wanted more volume in my fine, limp hair. The perm burnt my hair so bad that in the couple of months following the perm that I had handfuls of hair falling out every day. Then, when Jarrod and I went to Riot Fest in September, we were both admiring people’s dreadlocks, and I mentioned how I had tried dreadlocks a few times and failed, brushed them out, etc. I had installed them alone, or with a friend’s help. But they never seemed right so I never kept them long. But Jarrod was really into the idea of me having them because he appreciates that style. So we decided I would go get them professionally done to ensure a long future with them. We decided to use real human hair extensions with them so I wouldn’t lose too much length, and they looked pretty good once done.
Over the first couple months things went well. Once I got over the initial shock to my scalp and the itching faded, I was quite happy with them. I was getting monthly maintenance to keep them tidy-ish and make sure they were locking up properly. At my 2nd maintenance session, my stylist started expressing concern for my roots. My hair was already fragile from that perm a few months prior, and the weight of the dreaded hair + extensions was making my hair break off an inch or two from my scalp. But she remained optimistic and told me we would just keep up on the maintenance and keep reinforcing it, and it would likely be fine.
Last week when I went in for my 4th tidying, she wasn’t so optimistic. She said my fine, brittle hair wasn’t doing so well, and I had a lot of factors working against me for a future with the dreadlocks. At that point, I felt I needed to make a tough decision. I could either keep going, paying her to maintain and strengthen my hair every month with no guarantee it was going to be successful, I could brush them out and have “crypt keeper” remains of my hair, or I shave my head and have a clean slate. Jarrod and I discussed all the pros and cons of all options involved, and came to the very difficult and painful decision to just shave it all off. And rather than stall that decision, we decided to do it as soon as possible so it can start the process of growing back. Before shaving. The final pic with dreadlocks.
I’m honestly okay with it. It feels good, like a weight has been lifted off my shoulders. I know it’s just hair, and will grow back. And Jarrod seems to be okay with it too. He said he was more concerned with my reaction to shaving my head than how he would feel about it himself. But since I am okay with it, he is too. The kids really don’t seem to care all that much. The girls were in disbelief that I’d do it, but the boys already know how spontaneous I can be.
For now I’ll wear plenty of hats to keep warm since it’s still the middle of winter here in Iowa. I plan to keep from dying my hair indefinitely, and certainly won’t be perming it ever again. I’d like to see what it does when left to grow naturally. It’s been decades since I’ve just let it be. I’ll find some decent quality shampoo and conditioner to keep it healthy. And I’m already taking Biotin and other vitamins to make sure it grows back stronger.
I made the decision recently to give it another try after several failed attempts over the last 4 years, and I started a new set of dreadlocks.
My desire for dreadlocks started back in 2012 or so. I’m not sure the exact person or thing that made me want to give them a try myself, but I started doing a lot of research. I joined a couple of groups on Facebook, I watched YouTube videos about how to do them myself, and I read a LOT of information online. The first time I tried them, I had my mom help me, and I used wax. Obviously that was a HUGE no-no, as the wax coated everything it touched including my face, clothing, bed sheets, etc. That was very short-lived, and they were combed and washed out after less than a week. I looked up some more natural ways to get it done, and found the twist-n-rip method to be something I could do myself. I tried that, and they lasted about 3 months before I was so itchy, full of flakes, and felt incredibly unattractive and had a friend help me brush them out.
I tried it a couple more times in the same way, and the final time I decided I was never going to try again. It was far too itchy, stinky, and uncomfortable overall. I even made myself a private YouTube video to watch if I ever considered doing it again, explaining why it was a terrible idea.
I must say however, in retrospect, I believe a lot of the bad luck I had with this style was the lifestyle I was living as much as the misinformation and lack of support I had to pull it off. As is said in many cultures, knots contain and keep energy, and I was never in a good enough place in my life, physically nor emotionally, to want to keep those vibes attached to me and worn on my head.
Then, in September, Jarrod and I went to RiotFest in Chicago. There were quite a few people there with dreadlocks and I was in love with them! I told Jarrod how much I admired dreads and wished I could pull it off, and he also said how much he loved them. So we discussed it further and we decided to get some professionally installed for me.
A week later it was done. It took 6 hours and human hair extensions to get them started because of quite a lot of damage I had due to a perm I’d gotten a couple months prior. Its been over a month since they were started now, and they are still comfortable 90% of the time. The only time they aren’t is if it’s wash day (because I wash when they’re itchy). I have the proper shampoos and products that help them lock up the right way, and keep me from itching or stinking. And my stylist is pretty amazing too, with her maintenance keeping them looking tidy, and advice as to how to care for them to keep them healthy. Not to mention my mental and physical states are MUCH improved… I love my life! I do believe with the amount of care and attention my hair is getting and will continue to get, these beautiful locs can last a very long time…. years, in fact! I’m very happy with my decision to give it another try.