Baltimore and hope

I just had my 6 month check-up with my doctors at Hopkins. I meet with Dr B who did the reconstruction part. He was very pleased to see me, mainly because I had no issues. He did notice that my scar was still red. He said to give it 6 months and after that if it is still red he can do microdermabrasion treatment on it. My insurance will not pay of course. (What else is new)

He also said that my right side is a little thinner then my left. This he can correct with three different treatments.

1> fat injections from my hips or thighs. This would be permanent and note very invasive.
2> Fillers. Also non invasive but not permanent. I would have to get it done every year.
3> Surgery.

Well you know which one I will take. Number 1 please. He states I can have this done at any time and do not have to wait. I think I will do ahead with it sometime next year after the holidays.

I later meet Dr K, who did an examination. He was not too please with scar that was left from my last surgery but said other then that thins seem fine. I will have to see him again in 6 months as a follow up.


So all seems to be going well. Have my little happy face on now.

I am going to run a 5K

There it is. The girl with only one fibula bone will run her very first 5k in September. I never thought I would do this, EVER. Even before the surgery I thought people were crazy to do this. Walking I could handle, but running?

For the last 2 years I have been working with a trainer at my local gym just to build up strength and be more active and fit. Shame it had to take me getting amelo to wake up to the importance of getting more active. I told my trainer when I started that my goal was to run well enough that I could get away from a robber. My leg was very weak after the surgery where I could not run 5 steps let alone 5k. But now thankfully the strength in my left leg is much better. It's still not 100% nor do I think it will ever be. At least I can run 3 miles, not on a track but on a treadmill. It's a little different when you are out in the open.

Tomorrow I will be heading out to the 5k course and run it for the first time for practice. I don't expect to finish the run in any record time. I am sure it will take me 1 hour or more. But I will take my time and at least finish it. To me after all of this, that will be such a great accomplishment. I just hope I don't pass out. :)

Cursed!

I firmly believe that I am cursed. A lot of negative stuff has been happening over the last few weeks. About 3 weeks ago I started to feel light headed, nauseous and ill. After going to the doctor she diagnoses me with Vertigo. (BS). I am sorry but I know my body and that is not it. A week later I almost passed out at work. I was taken to the ER, who also said I had Vertigo. (Again, BS). Long story short I have to make am appointment with a neurologist. But I wonder if this is related to the graft? Could it be failing? Perhaps I am worrying about nothing but I just can not help it. It’s always in the back of my mind.

The 2nd is not really related to amelo but it goes along with the curse feeling. I was taking a glass cup out of the kitchen cabinet when the glass next to it fell off the shelf. It crashed onto the kitchen counter, where I had other glass cups and shattered. A giant piece of glass bounced off the counter and landed right on my barefoot. Needless to say there was lots of blood and another trip to the ER. Hour later and 6 stitches I was home. UGH


The 3rd is a direct link to my recovery of amelo. I had an appointment next week to see Dr Sinada at Hopkins for my implants surgery. But when I called to reschedule I found out he is gone. WHAT? I was told that he left about 3 weeks ago. Why was I not informed? I mean I would have traveled 3 hours to see him. When were they going to tell me, when I got there? I was mad. I understand people do not stay in one job forever, but still. Now I have to start over. That is what frustrates me more. Dr S knew everything about me. He has been with me since day one of this whole process. It's just draining. Plus I will miss him.

Anything else the universe can throw at me?

Support

Life can be daunting at times. It can get especially disheartening when you deal with a disease such as amelo. You can feel so alone. Friends and family do not know what you go through. Not really. They will not know (and I hope never) what it is like to have ½ your jaw taken out or part of your fibula or hip bone gone. The worry that you might be deformed (depressing I know). But what they can do is offer support. A shoulder, an ear. They can tell you to stop your complaining when you go off the deep end for something so stupid. (Thanks bro!)


But what if you don’t have that support system… I recently heard a story and I really hope it was exaggerated. This woman, we will call her Mary, was just diagnosed with cancer. Now instead of her friends being there for her, they abandoned her. She took it as they did not know how to deal with her having cancer. But regardless, you do not abandon a friend in need. Especially one going through something so serious. Lucky she found some support in a fellow cancer survivor. Bless her.

So I say to all my true friends out there, thank you for being there for me. To the rest? Go Frak off!