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!
In regards to life accomplishments and milestones, I am on my own timeline. I sometimes forget this and have momentary emotional breakdowns. Milestones in life that people reach at every age are reminders that I am on a different timeline. Trying to keep up with my friends/family throughout life has been a stressor that maybe it shouldn’t have been. I’ve realized I’m about 4 years behind my peers in most milestones. I attribute that to having survived an illness and being placed in a fragile box. I say fragile box in that people really only talked to me about my legs or general health for so long that I think I forgot to be a child. In turn I forgot how to be a teenager and young adult. Maintaining my health & general comfort has always been of utmost importance to me no matter what. If my legs are hurting while I’m walking - everything else will annoy me. For as long as I can remember, how my legs are feeling attributed to how I am feeling. Currently, I am still recovering from my travels to San Francisco. Swelling, bone pain, numerous bruises and a few open sores have set me back exponentially. I don’t think I even did any homework last week because of it.
Driving or sitting for more than 20 minutes has required me to completely take off my left prostheses for the last 10 days.
As mentioned previously, I am about 4 years behind emotionally & in terms of achieving milestones overall. Many people get their first kiss somewhere around middle school, first boyfriends typically happen in high school and graduating college somewhere around 22. I think my first kiss happened around 19, I’ve only been casually dating (since age 23) and I graduated college when I was 25. It seems as if many people I know or see via the media are starting to get married around 25 and beginning their families around late twenties & early thirties. I am in no position for marriage or babies at this point in my life. These are things I definitely want but presently I know I am just not ready (who is, I know). It’s interesting how people treat you if you have no serious relationship by a certain age or if you aren’t pregnant at a certain time in your life. Having decided that graduate school was something I definitely wanted for myself back in 2007 I know I have forced myself to be set back. It has been refreshing that in 2014, people are waiting longer to get married and to finish school or whatever obstacle they need to overcome before such a commitment. Regardless that I turned 30 this year should have no effect on if others think I am successful interpersonally or otherwise. There are many milestones I have achieved that no one else will ever even have to go through. I survived meningitis; fought for my life and came out alive. According to doctors & medical staff, I wasn’t even supposed to be able to sit up on my own, stand in prostheses, walking without assistance or any of the other medical issues. Living on my own, driving, maintaining jobs, graduating from college, working on my masters degree and traveling solo have all been things that may have been more difficult but I have done each and everyone of them. Successfully.
I need to stop comparing my life to others, it becomes an issue so very often. Seeing friends starting their families, getting married, having successful careers and everything else people do at this stage (late 20s/early 30s) should be motivational to me. I shouldn’t compare myself and think - why am I not also at that point? I need to remember I opt to reconstructive surgery in my 20s that made me have to drop classes and push back my graduation date on more than one occasion. At both age 20 and 28 I relearned how to walk in new prostheses. I did graduate college and tried my luck at a career that ultimately made me realize I needed more schooling & interning to be the best possible me. If you have asked me why I do not have ‘xyz’ and I start to become standoffish that is why. I do not mean to be a bitch it just reminds me of things I haven’t yet been successful at. Hearing things like, ‘you’ll find a good guy just keep looking’ isn’t really all that helpful. I’ve dating some amazing people, I simply wasn’t in the right place to form long-lasting relationships. Realizing a few years ago that I shouldn’t have even been dating throughout most of my 20s was a hard pill to swallow. I know many people think the whole, ‘timing is everything or its not you its me’ are gimmicky. But in all honesty I wasn’t ready for a relationship and it was me. My timeline, my success. This will be my mantra. Be you and stop comparing. Don’t be discouraged. Your timeline and your life are your own. This is ability.
A brief view into my trip & sight seeing adventure while in San Francisco.
Tried a home remedy. Would recommend the turmeric & honey paste method. Soothing what ails me. Only used on my left leg.
As I mentioned previously, I went on a trip to visit some friends in San Francisco for Labor Day Weekend. I made it a short trip because the amount of walking up & down hills just takes a toll on my body. I got back to the Midwest last Tuesday afternoon and proceeded to sleep for 18 hours. You did not misread that. One I was tired as I had to catch my ride to the airport at 4am and two my legs were just done with me. They legit tried to break up with me.
Wednesday I decided to take a personal day (I was already going to be leaving at lunch) as I had a trip to IKEA that day. Instead of working for a few hours I took a long bath and slowly got ready for my day. The drive down was no big deal, walking around the store for 5 hours also not a problem as I had a cart to hold onto. I knew that added walking wasn’t going to be good for me. On the drive home I removed my left prosthesis so I could drive comfortably.
Thursday, I finally had to show up to work. Taking both a vacation day and personal day back-to-back makes me not want to take anymore in the same month let alone the same week. I got a call I didn’t have to work that evening with my client which seriously saved my life. However, I did have a concert I had tickets for and still went to that. It was not comfortable. I went home after work and just relaxed without my prostheses which was good but should have done it for many, many hours if not weeks at that point. I took a pain pill and toughed it out. At this point my legs weren’t really swollen but it felt like I had bruised bones. Which let me tell you is awful and almost nothing makes that feel better. Not even pain medication.
Finally the weekend arrived, I did work again on Friday but was able to wear tennis shoes which are a godsend when my legs are killing me slowly & painfully. I went home and did laundry and then spent the next 20 hours without my prostheses. During all this time I did not a lick of course work (I’m in grad school, you guys) and so spent Saturday evening doing a week’s worth of reading. I’d like to thank all the chai tea. Saturday night is when the swelling showed up and took residence in my left leg. I was helping my friend take inventory of what she has for her soon to be arriving baby and again took off my left prosthesis to do so. As the night went on I noticed how much it was swelling. It got to be about 3x the size it normally is. After dealing with general pain from walking all over a city and the general pain while walking at IKEA and then standing at a concert I was just done with pain. I had a bit of a breakdown - which honestly I wish I could have those more frequently. I went home took an Epsom salt bath and then used a turmeric paste to aide in healing. By Sunday afternoon it had gone down to about half the size which made it possible for me to work with my client. It went down slightly with the same sort of treatment plan. Epsom bath, as much time out of my prostheses as my life can afford me and sleep. Next weekend (Sept 20th) I am in a friends wedding. I must heal before that gets here. It’s too bad I can’t have a month without legs to just heal once & for all.
I have also only been able to get my left prostheses on because I am using a nylon stocking instead of my regular sock. Still yelling out in pain when it goes on but once we’re in I’m good to go (for a few hours). I am so over pain medication, ice packs, Epsom baths, resting, sleeping, pain, swelling and everything else right now. I should note that even if I went to the doctor I am immune to all antibiotics and so I’m not wasting a visit & $300+ to see one.
Trip was pretty great besides my legs being ruined for a few days. Walking uphill or even at a gradual gradient is so much harder on my soft tissues. I really enjoy San Francisco but always forget how terrible the terrain it to me. I did get foam added to my leg and that appointment took 2.5 hours instead of 20 minutes. Which was a bummer. I am hoping to figure out vlogging soon as some things would be easier to explain via video. Thanks for checking in!
Tonight a stitch from a 2005 surgery came out. It’s amazing how long foreign objects can live in your body. It was hanging out just below my right eye brow and started to surface over the last few months. And tonight it finally fell out. It just blows my mind.
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.