Through this blog I found and embraced myself. I am a bilateral amputee after surviving meningitis in 1986. I have some scarring and have gone through numerous reconstructive surgeries. I am here to encourage independence, share my story, and grow into the best person I can be. I enjoy all things music, art, travel, cooking, humor, love and general creativity. Let's help each other through this journey of life!

 

Can I help you find some perfume and other insulting questions

Last weekend was my birthday and I had a great little party with friends and family. I received a few gift cards and wanted to use the one for Ulta while their shampoo/condition liter sale was happening. I realized I had some time last night after personal training and before my last final exam. My friend Candis agreed to meet up with me as well as she also loves a good Ulta trip. I got there a bit early and was browsing the scents. I am about to run out of my perfume and figured this was a good time to test a few. I was looking for a scent I wore a few years ago but apparently no one is selling it in Madison. I was visibly confused by this as the company had a few other perfumes but not the original Maybe Baby (Benefit). This older woman in her 50s or 60s came up to me and asked - “Can I help you find a perfume?” I told her which one I was looking for and that I’ve noticed it is more of an online purchase. Side note: I really hate buying things online unless it’s like concert tickets or travel related items. 

Before she could respond she looked directly at my face and down at my arms and yelled, “What happened to you?!” I tersely said - meningitis. To which came my favorite reply of - I had no idea that it was possible to result in skin damage/scar tissue. Since everyone is a doctor and knows how meningitis presents itself in every person; I rolled my eyes so hard I probably lost a contact. I had just come from personal training and sweat off any remaining make up from my face and my face was flush (causing brighter than normal scars). This woman, I’ll call her Helga, then had the audacity to ask me if I needed any assistance finding a good foundation/consealer. At this point I had only asked about one perfume.  I just started looking around the room as if I were on that show, Punk’d. I wasn’t. I said I was fine with how I looked. She asked if there was anything 'they' could do for me to get rid of the scarring. And I laughed. I laughed so hard and so quick that I was ready to lay into this person. I said I had spent many years having reconstructive surgery and this is how I look. She did say it was great I accepted myself and how I looked, as many people never get to that point. However, Still not catching on and me not having a good way to exit the situation, she asked how I got meningitis. I said, “I don’t know, it’s airborne. People just get it.”

Helga goes on to tell me the most ridiculous story I have ever heard in trying to relate to me. And I get a story like this once a week if not more. She tells me her brother had meningitis and lost his hearing because of it. Helga goes on to state that when they were children, they liked to swim in the open cow manure pit (presumably filled with cow shit) and that her brother caught meningitis. He had to relearn to walk, read lips, etc. Can I reiterate they swam in a pool of cow poop? SWAM…IN…A…POOL…OF…COW…MANURE! She may have said they filled this pit with water after it was drained but I’m sticking with the fact they still swam in the cow manure pit. 

Helga finally sprayed a few terrible scents onto tester strips and I walked away to the opposite side of the store. And luckily my dear friend Candis joined me in the store. I waited to tell her the swimming story until we were heading to dinner. I did tell her about all the other insulting things that were said to me in the span of 5 minutes. I am really wishing I had looked at her name tag instead of rolling my eyes during that entire encounter. I’m not sure how I didn’t just start throwing perfume bottles or something. Why, would anyone ever openly insult someone’s appearance at a make up store when they weren’t asking for assistance with that? I always feel like I have dealt with so many bizarre, insulting situations and then something crazy as this happens. If I were asking about make up specifically I would have had no problems with these questions. People assume I want to hear about the tricks of the trade and really full coverage foundation. I know tricks but going to a make up store is not when I am in full make up for your viewing pleasure. 

There was a time when I would have ran over to that full coverage makeup with this makeup consultant person but that was 5-10 years ago. Scars are part of who I am, they are part of my story, they alert people that I am different, and without them on me I wouldn’t be me. Yes, it took a really long time to figure this out and only when I was about 26 or 27 did I realize I didn’t need to have anymore reconstructive surgeries to remove scar tissue because then I would no longer recognizing myself. I do draw the line at people assuming that because I have scars that I feel ugly. I DO NOT. I enjoy my appearance and that is something that took 26 years to get to. 

Let’s all stop assuming and relate to each other on a more humane level. 

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Anonymous asked
If a devotee tried to date you, would that be out of the question for you? What would be the best strategy for going about approaching you? I think letting you know would mean a solid nosedive and crash of all chances. Then wouldn't you be condemned to wonder if every single man or woman after your heart was, even if in some way, a devotee? Isn't it better to be wanted for who you are than to be merely tolerated for missing something?

I think that would make for a very off balance relationship for me. Even if someone didn’t come out and tell me I’d be able to figure it out rather quickly. I wouldn’t want that to be the focus of a relationship. But I guess as this hasn’t happened in real life for me I can’t really say. Thanks for asking. 

Somehow I have more hair after cutting 6 inches of it off today. 

Somehow I have more hair after cutting 6 inches of it off today. 

Hair

I decided to make a hair appointment after weeks or even months of looking at all the lovely long bob (lobs?) hairstyles. I have always had quite thin hair but spend a lot of time curling it and using special potions to make it appear fuller. I’ve been trying to “grow my hair out” for about 2 years and it always gets to a point where even with trims it never wants to stay healthy for long. Right now I am at that point. I’m a bit nervous to cut off a significant amount of hair as it doesn’t grow quickly for me. I’m realizing now this has to do with spending three months in a hospital bed recovering from meningitis and the subsequent amputation of my legs. Upon leaving the hospital I had all but rubbed the hair off the back of my head. Keep in mind I was only 2 years old and what else would I be doing during such a recovery besides lying in bed. 

Now 28 years later and I still get nervous anytime I get a hair cut. Nervous my hair won’t grow back or that I’ll absolutely hate it short. This now seems reasonable to me and I’m okay with cutting my hair every other month. However this haircut will not be a trim (unless I decide against it between now and 3:15 tomorrow). I’ll post a photo as soon as possible. 

I’m realizing all my perfectionist tendencies have just been attempts to appear like a normal person; a normal person with hair that hasn’t been rubbed off. This is ability! 

Can we walk about how tone my arm has gotten in 2 weeks of personal training? And this is a lame attempt at a sneak peak of my birthday outfit. 

Can we walk about how tone my arm has gotten in 2 weeks of personal training? And this is a lame attempt at a sneak peak of my birthday outfit. 

Working out will pay off - I must remind myself of this. 

Working out will pay off - I must remind myself of this. 

Anonymous asked
Would prosthetics you could get out of quicker (pin lock vs suction) maybe let you do Zumba since you could dry you residual legs and switch to dry liners more quickly than with suction limbs? Is there a way to streamline the corset maybe as well?

New legs are not an option for me. I still don’t have any insurance and am going through the terrible process of proving I need disability coverage. These legs are as streamlined as they get for me. Did you happen to see what I was using previously? It was sad and my prosthetist was amazed I had been using them for so long (10 years). Maybe one day I can have more than one pair of prostheses but until then I’m making due. Thanks for the suggestions! 

Zumba; I Need To Break Up With You

I love dancing. I always have and I always will. Any time I’m invited to a wedding I’m so excited to dance at the reception that I immediately RSVP. When I realized I could take a class that allowed me to dance, I was all in. I took my first class back in March when spring was still a distant dream. The first session of zumba was exciting and tiring. I wasn’t sure what to expect but was impressed I could pick up the dance move/choreography rather quickly. Granted, I was laughing most of the time. 

Since being able to join the gym with my step-mom, I’ve done Zumba a handful of times. The room we use gets really hot almost immediately. The room is used all day for various group exercise class and when 20 or so women are dancing to fast-paced music, it heats up after the first song. Sweating shouldn’t be a problem for most of us but it is for me. When I sweat (particularly when my legs sweat) the suction aspect of my legs is no longer functioning. When my legs are not secure it becomes really hard to dance and walk. I think zumba will be something I can only do during the colder months and luckily I live in Wisconsin. Another nasty side effect of sweating is that it makes it easier for my legs to have breakdowns/sores. Even when I do zumba I have to wait at least a week or two before my legs are ready to do the class again. I guess I’ll just have to say I’m on a break from zumba. 

I think if both of my legs could easily slip off, I could run to the bathroom during one song and ‘de-sweat’ but that isn’t the case. My right leg (my dominant leg) takes a full 5 minutes to take off and that requires me to sit on the floor to get it on/off properly. Who wants to sit on the gym floor for any reason? Any tips? I already do certain-dri and I even dry my legs off after work prior to going to the gym. It seems as if some work outs will just be done in the winter for me. This is ability! 

Rachel and I totally sweating at Pitchfork a few years back we had only been outside for 30 minutes. 

I see why everyone is loving dry shampoo. 

I see why everyone is loving dry shampoo. 

Suspension Belt?

Is it possible that the suspension belt I wore for 26 years kept my hips from ever coming in until now? In the last year I all of a sudden have womanly hips; this is something I’ve never had before. Or I guess it could be that I’m a late bloomer, either way I have hips that can’t lie. 

Personal Training!

Next week (Monday & Friday) I get to use a personal trainer for the first time ever. I’m so excited for this. I’m not sure what to expect but that’s the best part. I’ve always kind of wondered what exercises were best for a double amputee but have kind carved my own work out plan thus far. Who has some tips on what I should ask about?! I’ve already decided I need to ask what things I can do when my legs are sore and I can’t make it to the gym. In a week I should have some exciting new information at my disposal. This is ability! 

Here’s my brother and I in our body builder finest. 

Anonymous asked
vlog would be great. i'm also akbk and the yoga stuff and the stuff about balance and prosthetics would be useful as well.

I am hoping to have a Vlog aspect in the very near future. I’ll be sure to include yoga, balance and lots of other things that aren’t covered by docs or prosthetists. Things that really come with first-hand knowledge. Keep those ideas coming! 

Anonymous asked
Just curious how much leg you actually have.

I am at the knee on the right side and just above the knee no the left. 

Regardless of how irritated my leg looks here this is quite literally the best it has ever looked. Not to mention it’s summer and that means I am sweating & sweating well before anyone is sweating. Quite literally my liners fill up with sweat before I leave for work and then I have that to deal with. It’s less than attractive to put it politely. Which reminds me I need to buy stock in Certin-Dri. 

These are photos after about 3 hours of being prostheses-free. I was  experiencing phantom pains which I finally figured out that I have. It’s kind of shocking after being an amputee for 28 years that I am just now figuring some of this out! Right now the phantom pains seem to be shooting out of the small sore at the bottom of my right leg. I have learned that if you gently tap the area with your finger it would close the ‘pain window’ or something like that. It did actually work and seems to have caused this shooting, razors coming from inside my skin, electric, pins & needles, drive-me-crazy, pain to end. Any other natural remedies you can suggest?! I still don’t have proper health coverage and cannot afford a doctors visit or subsequent pain management meds. 

Update - Adaptive Yoga

It’s rare that I am impressed by myself. I’ve come to know what I am capable of and where my limitations lie (if at all). This week I started yoga at the local community center with a client I work with a few times a week. Not going to lie, I was totally nervous about how my body would respond to the yoga poses. I’ve used a pilates DVD since I graduated high school and have adapted that to my body. Its a work out I can do to strengthen my core without needed to have my prostheses on. We picked a ‘slow yoga’ class as we are both beginners and that was something to get used to. Holding a yoga pose was really the only thing that I could see improving. Right now I have a bit of a sore at the bottom of my right residual limb and so its hard for me to bend completely. See photos below. 

This is the year for me to do all sorts of physical activity. Starting with body pump and zumba and now I can add yoga to my weekly schedule. I love being active and getting fit seems to be an added (albeit slow) bonus. I have also put in a request to meet with a physical trainer a few times. It was nice to give the gym my requirements/limitations ahead of time so the physical trainer can adapt whatever workouts to suit me. Has anyone else (amputee) used a physical trainer? What were some things you did or some things you wished would have been included with your work out? 

This is ability!