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!
It is unique as I don’t have a typical amputation. I’ll be sure to do something with getting ready in the near future. Thanks!
I know the last time I went to visit friends in San Francisco I made a post about how the city makes me feel more disabled/handicap. I think after this trip I’ve come to realize I probably need to stop visiting simply because it takes me a good three weeks to recover from walking in that city. I love all things San Francisco - it’s really an interesting city. I do not love how sore my legs become and require me to then be holed up in my apartment for a few weeks (yes, weeks) to recover. Even with having a car at the drop of a hat we still have to walk up & down hills to get to it, everything requires walking and everything makes me a sweaty mess. Why did it have to be in the 70s/80s while I was there? I wasn’t planning on dealing with heat. I didn’t want to depend on transportation but I really have to. I need people to drop me off and pick me up right at the door of a shopping mall or restaurant. I need a lot of down time when I travel. I need special treatment in every sense of the word. I will be traveling some time this winter to San Diego but I have a feeling that will result in an entirely different experience. In San Diego, I do not have to walk up & down sidewalks; its just not that hilly where I stay. I already told my friend how traveling with these new prostheses is making me more handicap than I have ever felt previously. Swelling had never been an issue until these protheses. I guess its a price I’ll have to pay.
My flight home from San Francisco was uncomfortable to say the least. I was hoping to nap during my 4-hour flight back to Milwaukee but was unable to even get comfortable for more than 4 minutes. I was forced to stay awake and read - which is fine but I was dead tired. I asked to be moved to a bulkhead seat but the ‘plane was full' and apparently that means we can't switch seats. I know next time I fly I will be booking the bulkhead seats. I did finally utilize the pre-boarding option for those who need extra time to get in. Now I don't actually need more time but I always choose a window seat since climbing over everyone is a hassle I don't want to deal with. After limping around the airport I also decided I'd give up my carry on luggage to be checked at the gate (smart move). Maybe I should back up for a second, my legs after being sweaty for 4 days straight had quite a few open sores and swelling to deal with and so limping resulted. So, here I am limping through a major airport, utilizing pre-boarding and starting to feel very different from everyone else.
I know I am not the only one who has dealt with issues like this. I know I am not the only one with handicap privileges. Being the overtly independent woman I am, I hate (HATE) the idea of asking for help or depending on others. Doing things for myself is what I live for. Not seeing results from things that normally heal my legs in a few days is utterly the most frustrating thing I can imagine. After a week and a half things started to look up. Swelling that got really out of hand lessened but was not completely gone. The unfortunate twist to my recovery story is that I was then in a wedding 11 days later. Being in a wedding is fun and exciting - who doesn’t love getting ready with friends. Standing for photos, dancing and extra walking delayed the healing process yet again. It wasn’t so bad that I had to miss work this time around because I just took an entire Sunday to lay on my sofa. Even today (October 9th) I am feeling the aftermath of my San Francisco Trip and being in a dear friend’s wedding. Can I just heal already? Now the sores don’t hurt and the swelling is no longer there but I am still healing. Anyone have tips on what I can take that is not a medication? Thinking organic, natural options. I currently spend a lot of time out of my prostheses, I take Aleve (would enjoy not taking this 2x a day), bubble baths, wound care and less walking. Any vitamins or teas I should try to promote healing??
I am spending my afternoon at my prosthetist’s office today. I have had swollen legs, bruised bones, open sores and now blisters. I know I have been doing too much walking and traveling than I normally do this entire month. I have gotten to a point where I have done all I can on my end. Including spending 10+ hours a day on my sofa without my prostheses. For a while now it just hurts to sit with my left prosthesis on for more than 15 minutes at a time. I find myself taking it off (when I can) throughout the day. So today I am hoping we can slightly expand the left socket so I can exist. Pictures to follow and hopefully I snap a few while the work is being done. Someday I will have insurance again and will be able to see a doctor for such issues. Until then (2015, fingers crossed) I will have to deal with things on my own. Ugh. Thinking positive thoughts for this appointment. Also, I plan to get a lot of reading done for my crisis counseling strategies class. It will be productive in some sense.
It’s not a secret people ask me almost constantly about my physical appearance. Why do you have those scars, why do you have those legs, why are you walking like that and any number of combinations therein. Over the last few years family members and close personal friends have had regular life events that have alerted the public of their changing physical appearance. Most interestingly when friends of mine have gotten pregnant. In all honesty, its exhausting answering the same questions all the time; especially when its not something you’re used to. I’m again realizing that I have had a skill at my disposal without even realizing it. Regardless of what the comments are about, it catches you off guard and you want to possibly respond with less than nice things to that stranger. Try to remember they have no idea 18 other people just asked you, why are you using crutches, when are you due or why do you have scars. You would think people would have some inclination of this but they just don’t think. It’s a gut reaction and by the time they start saying something its too late to turn back (so to speak). With my 28 years of random people asking me everything under the sun, I would say less than 10% of those people even cared what I had to say. They want to know 'what's wrong with me' and not who I am. Don’t let something temporary make you feel bad or better yet don’t let some stranger’s question bother you for too long. I have to remind myself of this when strangers or even coworkers become exceptionally rude. When it comes to the physical appearance, people are curious but they seem to have left their tact somewhere else. I’m always going to have some scars (face & arms), I’m always going to be a bilateral amputee and I’m always going to use prostheses - which in turns means I will always be asked by strangers about my appearance. Some days are better than others. I could take offense immediately (I have) and just walk past the person or I could tell them my whole life story. It really just depends. I don’t necessarily want to be answering the same questions all the time but that was also the hand I was dealt. Also, I hate cards (why I use that phrase is beyond me). So if you’re presently dealing with questions or statements regarding your temporary situation, remember there are people out there dealing with that every day of their entire lives.
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.