Through this blog I found and embraced myself. I am a lower limb bilateral amputee after surviving meningitis (meningococcal septicaemia) 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 just say how frustrating it is to be waiting days/weeks for my prosthestics person to contact me. I get that everyone is busy but just simply a response would do. Now I need a bit of foam added to my left leg as it has been shrinking steadily over the past year and a half. I asked about that 10 days ago at my last little appointment. Its now 3 days before my trip and I am only just now hearing from them. Gah. Also I am waiting on a letter from them (for a few weeks now) to send with my disability paperwork that I have been working on since April. As I typed this up, I was told someone else can see me (thank goodness). It just feels like sometimes I am put on the back burner when my requests should be treated like anyone else. I hate doing things last minute and that is what it always comes down to. End rant.
Tomorrow is a day I spend doing all my readings, discussions and journals before I get away for the weekend. So excited to make it back to the Bay area to see all my lovely friends. Aug. 29-Sept 2nd will be a much deserved break!! Who wants me to come join me for caffeine & desserts and lots of reading on crisis counseling. Anyone? Bueller? No? I understand.
I was going to break down each and every personal training session but I always seem to be lacking energy once the work out is over. I’ve been seeing my personal trainer once a week for over a month now and have learned so much.
My personal trainer explained to me it is harder for me to ‘lose weight’ since I am missing crucial components of my body. Not having a left knee, ankles or calves makes this whole working out thing a bit complicated; albeit not impossible. I always thought I was working harder by using prostheses but that does not equate to easily losing weight or getting in shape. I should also be eating less calories in general because of this. Prior to personal training I was just going to “work out my core” because that seemed like my trouble area and who cares about the rest. You need to work out all your muscle groups regardless of how many body parts you do or do not have.
On the first day of training, after she explained some life-changing things to me, she asked what I wanted to get out of personal training. I really had no idea what I wanted besides getting in shape. I told her, “I want really toned muscles” to which she replied - all muscles have tone so that means nothing (in nicer words of course). I really wanted toned, slim arms and tummy. We are not measuring or weighing in as I am an amputee who wears prostheses. My goal is to have clothes fit nicely, to be more stable in the prostheses and gain strength.
Each time I work out I use the treadmill at the steepest incline I can handle for at least 10 minutes. I need to work up to using it every day for 30 minutes right now it has been 10 minutes 3x a week. I have two work out plans so I can change it up each time and not get bored (which I would). I use a leg press with minimal weight (10-13 lbs) and depending on which work out I use either both legs or one leg at a time for 3 reps of 12. This is changing my life. How did no one tell me to strengthen my thighs/hips - going up hill is so much easier already! Using an elastic band during #2 work out, I do leg kick backs and side-steps. I normally want to go home and become a vegetable in front of my TV.
Using the TRX machine for rows, inverted pushups and bicep pulls or a rope to do chops, pull downs and a cross body pull. These are all very accurate terms..ha. With work out #1 I use 15 pound kettle bells and hold them while doing 2 or 3 sets of squats. Work out #2 has me holding a 12 pound weight doing half squats with one hand raising in the air when I am squatting. (I might need to vlog about this). My thighs/hips also use an abductor machine with 35 pounds for 3 reps during the #1 work out. Each work out takes me about an hour to complete and is giving me really noticeable results. Lastly, I stretch. Stretching has proven to be more difficult as I don’t have crucial connecting points for muscles & bones. Luckily I have a great trainer who is working with me to try out new ways to stretch each time. I am hoping to more or less use yoga for stretching every single day.
This is ability!
After reading an article recently describing how films/plays are portraying disabilities by actors without having any disability whatsoever. It was stated that this was praised as something a great actor could portray without having to be liable for an actor with a disability on set. The article made me think back to my years in forensics (play-acting) with friends in high school. I have always loved movies and they are able to keep me entertained when I can’t sleep or have to stay out of my prostheses for a period of time. I am able to quote films word-for-word (much to the annoyance of everyone) which meant I am also fairly good at memorizing lines for play-acting. The first play I was a part of was Steel Magnolias and played Daryl Hannah’s part. I would get comments that I was great at presenting my lines and that I should have more of a presence in the play for the following year. I didn’t want that. I was fine only having a few lines. I was fine because I didn’t want people to notice my legs. I did forensics because those plays were done in classrooms after hours and not on stages. Stages that require stairs (without railings) to get onto. Many shows are now having more of a focus on disabilities. A few reality shows have actually gone a step further and cast individuals with visible disabilities. Now being who I am, I assume it is so the show gets good ratings and not necessarily that the person will shine for who they are. I get how pessimistic that sounds but can we all agree a little bit it is probably true. I mean it is show business after all. Since reality t.v. is casting real-life people with disabilities (so far I’ve only noticed a few shows) maybe film, tv shows and plays will do the same. There is hope yet! Don’t let your level of ability keep you from doing something you enjoy!!
The cosmetic stockings we chose are nearly spot on for my skin tone. Something I hardly have a chance to realize as I am typically wearing knit thigh highs or tights. These cosmetic stockings are really expensive ($75 a pair) and once they snag they kind of ruin an outfit. Right now they have a few snags in them but decided I would force myself to go without my ‘comfort blanket’ of covering my legs up with accessories. If cosmetic stockings came with a red undertone like actual skin has they would be perfect.
Human contact is great. It causes us to be happy and reminds us we’re not alone. Hugs are a great way to convey we care to others in various times of need. With that being said, I’m not really one to initiate a hug and here is why: I lose my balance. Now I don’t lose my balance totally but it really throws me for a loop when the hug is done. I end up not balancing on my legs (read: prostheses) and when the hug ends I’m in a weird state of limbo. Much unlike the popular game of limbo, which I’ve been told is lots of fun. Don’t get me wrong, I do love hugs but its going to take me longer than anyone else to regain my composure. I reserve hugs for things like family gatherings or cross country trips; not just when I’m out with friends. I’m sure this makes me appear to be standoffish but its really so I don’t fall down all the time. I hope you understand.
I never really got why I wasn’t much of a hugger until I had a conversation with myself (these occur often). It really opened my eyes after hugging a friend of mine at his sister’s wedding. I simply fell to the dance floor moments after a hug happened (yes, we were listening to Journey). Everyone thought he pushed me down and then walked away from the situation. But really I had to catch my breath and assess the damage - if any. Outside of a bruised butt I was rather unscathed. And it has always been easier for me to get up unassisted as that is a whole other animal.
More often than not I am simply concealing my flailing arms until I can regain my balance in my prostheses after a hug. It’s not really a big deal but just realizing I avoid hugs because of this was interesting to me. It’s not that I am standoffish I just would prefer not having bruises, falls or more embarrassing events than I already have. Just writing this blog allows me to contemplate things I don’t even think about but seem to be reaction to what life has thrown me. This is ability - in every sense of the word.
So this post was inspired by some make up blogs I am religiously watching lately. I noticed I was almost completely out of two products I use very regularly this evening and decided I needed to post about it right now. It might be kind of silly but it seems as if baby diaper rash ointments or creams are a godsend for me.
The first one is Burt’s Bee’s Baby Bee Multipurpose Ointment. I’m not sure what drew me to this product last year but I am so glad I purchased it. After never actually shopping at Whole Foods (read: I’m poor) I was excited to afford something. This ointment retails for $9.00, a price that can’t be beat.
Not only is the ointment great for curing diaper rash but also for curing irritated skin on amputated limbs. I typically use this ointment during the warmer months when my skin has been rubbed raw (sweating + walking = chaffing). It happens more than I care to think about but having an easy and affordable treatment plan in place makes everything easier to tolerate. Also, if my residual limbs seem to be a bit dry this helps them out in ways I never thought possible. I know I posted about this sometime last year when I found it but now after making it through two entire containers I think I need to refresh everyone.
When I do use this ointment, it is used overnight (about 8 hours), I apply it to the affected areas (raw, dry or anything in between) and then put my leg into a cotton sock to let it absorb slowly while I sleep or hang out without my prostheses. It is so soothing to rub it on my legs and with natural products I feel okay applying it as often as I do. I typically only apply it to scar tissue I have and then any areas that have blistered from my silicon liners. After about two days I can see everything heal up and even after one night everything has reached a new level of improvement.
The next product I am loving (another baby product) is the Aveeno Baby Soothing Relief Diaper Rash Cream. This is also a great deal at $5.99. So far I haven’t had to repurchase but I am definitely due in the near future. I believe I got this on a trip to Target or even the grocery store. It seems to be everywhere you can purchase diaper rash products. This one required more research on my part and I found that products with zinc oxide were exponentially important when dealing with prostheses and residual limbs. Wherever I read that, I am thanking them (sorry I can’t recall what site)!
It’s interesting to think I never knew yeast infections can happen anywhere on your body until recently. I’m sure I’ve been dealing with them for longer than I realize but now I know how to treat them without a trip to the doctors office. Last night I noticed that my left leg, in particular, was showing signs of a yeast infection (redness, inflammation & growth of yeast-gross). I grabbed this cream and have been applying at the same time as the ointment mentioned previously. Now I will say that the areas on my legs seem to have combination issues (both raw skin and an infection) so I apply things as needed. I don’t mix the products together as they seems counterproductive. Again, I only apply this at night as it would cause more issues while wearing my prostheses. Now that I know I can get this online I may have to order a few containers at a time!
What unconventional products are you using?
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.
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.
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!