Sometimes time is all it takes to get what you want.

11/3/2014

Hello all!

Today marks an exciting point in my life. You know when you have your mind set on something then years later you finally get it?! Well that happened today. (Really 2 weeks ago but I am celebrating today.) 2 weeks ago I got my tubes tied. Today was my follow up appointment. I get to the 9am appointment at 8:40. The doctor wasn't in yet. About 9:30 the nurse says he has 2 babies to deliver and it would be another hour before he gets in so she gives me the option to come back. Being the good student I am, I chose to go to class. I call back after class and they tell me to come as soon as I can and the doctor will see me within 5 minutes. They weren't lying. I talked to my OBGYN as he removed my stitches then released me from his post-operative care.

What really stuck out about this doctors appointment is something the nurse said to me this morning when talking about the procedure. She said, "That is the most selfless thing you could do. To make that choice and at such a young age, it's brave and I think it was a great choice and support it." That is probably the best compliment I have received in my life and it confirmed that I made the right choice. Someone once said, "having children is the most narcissistic thing anyone can do." I have to agree with this. I'm not saying no one should have kids because I'm not and its not that I don't like kids because I do, it's that people want to carry on the family name and their genes. While some people have excellent genes, mine have mutations with a painful phenotype to match the messed up genotype. It wouldn't be right to pass that on to a child. I made this choice many years ago. I first asked my OBGYN when I was 15 if he would do the procedure. I asked at such an early age because I knew they wouldn't agree to it at that age and it would take several years to confirm that I wouldn't change my mind. I wasn't expecting it to be 7 years, but here we are now. 7 years later and I finally got what I wanted. 

Good night.

Post-op update

10/22/14

I would like to start out by saying if you can't follow my train of thought it's because I am only 48 hours out from surgery. Monday afternoon I went in for a tubal ligation procedure. For those who don't know what that is it's basically "tying my tubes" so I will not be able to reproduce naturally. I am still able to have children but it would be one huge scientific experiment to do so. The surgery went well and I signed a consent form to remove anything that has abnormalities on it. My surgeon found a huge cyst that is about to rupture on my right ovary (the ovary that I hate and it hates me) but the surgeon was concerned with infection because I just had surgery last week and removing it would mean additional incisions. So along with the normal surgery pain I've been dealing with the pain of having a cyst rupture.

I only have one incision and that is in my belly button and the bleeding finally stopped. I looked down Monday night and it looked like I got shot because there was a round spot of blood on my shirt.  I was expecting stomach pain but not expecting the shoulder and rib pain from them pumping my stomach full of air. As the days progress my pain levels are decreasing along with the size of my swollen air filled belly. (I looked pregnant tuesday).

There is one thing about this surgery that stood out. And by thing I mean person. Brittany B. This woman is the most amazing person and friend I could ask for. She took the initiative to get my moms cell phone number (from either my brother or colt) and text her all through out my surgery and after to see how everything was going and not to mention all the kind things she said about me. I have only known her for a year, but I couldn't be closer and love this girl to death. It's friends like this that help me get through these hard times. It's like the saying if you can't handle me at my worst you can't have me at my best or something like that and she has been though it all. 

I would like to thank all of those who have supported my decision even though if you didn't I would still have done it anyway. 

Anyways I go back to the surgeon in 2 weeks, but until then I will be taking it easy for once in my life. Hopefully it was a success. 

We all have a lot on our plate.

13 October 2014


Many people with MHE have a lot of stress and anxiety issues, more-so than the normal population. I am pleased to announce that I am one of the few not affected by this. I do however have some stress when it comes to being a college student. This stress usually comes around mid-terms which is this coming up week. I have to get some things off of my mind so I can continue to focus on studying for midterms and completing all the assignments due next week.


First, we all (meaning all of us college students) have things we have to do. We all have a busy class schedule, some of us have jobs, some of us have homes we have to maintain and bills we have to pay. We all do our community service, maintain a personal life, and go out and have fun. Now on top of all that stuff I get the privilege of constantly visiting the doctors and taking time out of my week to have surgery.


With all this being said, I am doing a group project. I do not need to hear your excuses of why you can not meet to do the group project and why 2 days after we were supposed to meet why you still do not have your part of the project done. I just need you to do your shit in a timely manor and stop being inconsiderate of those around you. (This goes out to my roommate, Levi, too. Get off your lazy ass and clean up your mess and contribute to the house hold. I am not your mom and I do not like to live in a filthy environment. So when you get drunk and decide to cook at 4am clean up your mess.)


Many of you think this may be extremely passive aggressive but if you know me, you will know that I have already sent multiple text messages to all of these people. I have gotten two responses back saying they will be at school to do their part (I have been here all day and they haven't shown up yet) and one response with an email back with their work (Thank you Colt Terhune).


The lab report has been assigned for two weeks and it's due tomorrow! What am I going to do? I will tell you what I am going to do/ what I have already did. Twelve pages later, I have finished the report doing two of the sections that others were supposed to do along with my section in addition to adding Colt's section to the group. I have left off two of the names of the people from our group but acknowledged that they were there to collect data. I will turn it in as is tomorrow. Now that I am done ranting, my stress level has gone from a 7 to a 4.


Thanks for reading!

Retail therapy

10/5/2014

So after every surgery I have to do therapy. Most people think about physical or occupational therapy (which I do those things) but I think about retail therapy. What is retail therapy and how does it improve my health? Let me tell you. It is shopping and shopping makes me happy (more so when I am using other people's money.) Right after surgery no one feels like shopping. Maybe on line shopping but actually going to the store, it's not happening. Standing for a long time hurts, trying on clothes is energy consuming, and carrying all those bags is a work out. Shopping also lets you know just how well that surgery worked. If it is arm surgery, trying on clothes especially with  lots of buttons tests your fine motor movements. Zipping dresses tests range of motion. If it is leg surgery, trying on jeans tests your balance and trying on shoes lets you know how well you can or can not walk. 

Yesterday, I had the best retail therapy experience. It was for my knee surgery and I actually used my own money. I walk into the store and they girl comes up and asks me if I need help. My answer, "yes yes I do. I am looking for a jacket." She then takes me all around the store showing me all the options and pulling sizes. Then starts a dressing room for me  (and even spelled my name correctly on the door.) I then browse the rest of the store. Picking out several shirts and jeans. I begin to try on all the clothes. I then get to the jackets. I went from 4 styles down to 2. Then I ask to try on different sizes in those 2 jackets to see what they would look like. The decision to pick a jacket and a size was difficult but I wasn't alone in the decision making. The store attendant along with a few random shoppers gave me their opinions. I took all into consideration and finally picked a size in each jacket. I decided that I can't narrow down the jackets to one so I bought both along with the perfect pair of jeans and some boots. It was a glorious day and my knee feels better. 

Surgery 22

9/11/2014

I had my 22 surgery 9/9/2014 on my knee. I was not impressed at all by the hospital or my asshole doctor. To keep my blood pressure down, I will not go into those topics; I will talk about my recovery thus far instead. I will adress the actual surgery procedure and the hospital stuff after I get a copy of my surgery notes. 

After trying my hardest to not be put to sleep for a simple knee surgery, they put me under full general anesthesia anyway. At 2:30pm on 9/9 I was put to sleep. The surgery was just a tad under an hour. I woke up around 5:30pm. I made it home at 7:30pm the same evening. After watching tv for a few hours I went to bed at 10:30pm and managed to wake back up at 7:30am and go to class the next day on 9/10. I of course over did it, despite being told by hospital staff to stay in bed, don't drive, don't get up for long periods of time, etc etc. After a long day of class, labs, and graduating meeting I get home just in time for my mom to come and help me cook dinner and shower. I get into bed at a decent time and that's when it hit me. I have done way to much for just being 24 hours out from surgery. My leg was swollen up and throbbing in pain, my shoulder (the one I had reconstructed) was having sharp pains, and both arms have sore muscles from hopping around on crutches all day. During the day I never realized I was doing too much due to taking my medicine every 2 hours and going off of adrenaline and will power. After the pain settled down I manage to fall asleep and only wake up with the pain kicks back up. I take more medice and go back to sleep. Once again I managed to wake up at 7:30am (9/11- today) and go to class. I decided to forgo wearing a shoe on I left foot due to swelling and to bring a pillow to class to prop my leg up. I take my quiz and make it all the way through class. The same nightly routine of my mom coming to help out occurred. I am now in bed thinking to myself that if anyone else had the same procedure done they would have never gotten out of bed. The pain has caught up to me and once again I realize that I have over-done it. Now tomorrow is Friday. Will I follow doctors orders and stay home and rest? If course not. I will once again go to class to take my quizzes and hop around and get through the day by taking my medicine and living off of sheer will power then drive a little over an hour to start physical therapy. I'm not looking forward to it at all but I will keep going about telling people that I'm doing well and I can do everything on my own. And after all that is over I will then address the fact that I have low kidney function and should probably see someone about that even though I was determined not to have any surgery complications. Bandages come off Saturday then I can take a real shower! 

Faking it until I make it,

-cripplingscars

PS. I get Ellie, my fur baby, back tomorrow night!

Me in my wonderful gown before surgery

My knee without the brace that I paid hundreds of dollars for and refuse to wear because it hurts. (Me not following orders again) 

The harsh reality

8/30/2014

 I am part of a support group for my disease but I have realized that with such a rare disease, many that have it are completely ignorant of that is going on inside their bodies, the correct medical terminology, or that they are allowed to see more than one doctor. It absolutely baffles me that people that live with this life-long disease are begging for the research because they state there is "little to none" out there have yet to do a proper google scholar search to even see if this is true. When one demote the scientific terminology to a cute phrase they also demote how seriously others will perceive their disease. I understand that cute phrases help explain it to young children what is going on without freaking them out, but at some point it is necessary to explain everything scientifically in order for them to really understand their disease. Also, knowing the scientific terms allows you to expand that Google Scholar search I mentioned previously. Instead of searching for MHE, one can now expand this search to Multiple Hereditary Exostosis (there is a huge increase of results now). When they've read everything that has come up on that, they can then search key terms that relate directly to the disease like "EXT 1", "EXT 2", "EXT 3", "heparan sulfate", etc. Now the results expand 10 fold.

Like I said, I am a part of a support group and the title of this post is the harsh reality, well I am not very supportive. I am empathetic because I know the struggle everyone is going through but since I know it all too well, my patience is running short for those who do not know about their disease, for those that complain their doctor refuses to do surgery or treat the pain but don't go else where for treatment. If you disagree with the answer given then why keep asking the same person? For example, when my shoulder was completely separated and I knew something was wrong with it and the first doctor didn't do anything about it ,I saw a second, and a year and 6 doctors later, I found one in a different state to do the correct surgery that was needed and guess what?! My shoulder is healed with minimal pain! 

For the second part of the harsh reality rant (for those of you who have made it this far), I am having my 22 surgery next week. It will be a temporary fix for my left knee but it should hold me over until I can find a better surgeon and the time needed for recovery of having my whole leg realigned. I have come to accept that no one cares (maybe a few of you and I am well aware who those few are by their actions). A few may wish me luck in the days leading up to surgery and a few may wish me luck the day of surgery but many will not even know I had surgery until I go to school on crutches the very next day (not even a full 24 hours after surgery) drugged out of my mind just so I don't miss that magic number that is a reason for automatic failure. For 2 or 3 days few will ask how I'm doing and like always I'll lie and say I'm doing fine but let's face it I'm about to have a slightly more complicated knee surgery than what professional athletes have and you won't see them out and about the next day. Really puts things into prospective doesn't it? It also puts them out for the rest of the season, but after those 2 or 3 days I will attempt to start walking again and no one ever asks about the progress or the healing process which is always the hardest. The surgery part is the easiest. Most people are usually asleep, I will be awake the whole time but won't be able to feel my leg. It's when one wakes up after surgery, once the nerve block wears off, once the IV pumping the magical pain medications and nausea medications comes out does the toughness of surgery hit. That's when you get to feel the pain, get back to daily life but a more difficult version, when people forget you live over an hour away from your parents with a roommate that doesn't believe in chores and even after survey will still expect you to do them all. That's when bitterness, rage, and hatred kicks in. Then after a few weeks all those emotions subside along with the pain and agony. You then start to not care, just like everyone else. 

In short I'm having knee surgery September 9th and will be in a horrible mood when I drive myself to school the next day. 

I'm still walking.

4/23/2014

I am back at the doctors for my feet since the other surgeon only saw me for 10min and tried to prescribe me a cream that doesn't magically heal tumors. I went about a week and a half ago and I'm not sure this surgeon is for me but we shall see. For my heel chords I only was complaining about pain in the right one. Upon examination it turns out that both hurt when pressure is applied. As for the "bump" on my left foot that has doubled in size in the past 4 months he couldn't tell if it's a cyst or a tumor. The doctor sent me for 3 MRIs last Thursday 2 for the heels/ankles and 1 for my foot. 

Today: I am here for my results. I am also blogging as my appointment progresses. They called me at 10am and asked me to come in early (before 3 if possible) because the doctor has to leave early for something. 

 -2:53 arrival and sign in

 -3:36 used bathroom

 -4:01 was taken back into room

 -4:06 doctor took MRI report out of the door since he hasn't looked at it yet.

 -4:15 nurse came in and asked if the doctor has come in yet

 -4:20 doctor comes in and explains my MRI "appears normal...well for someone that has had this much foot surgery" then he goes on to explain that I have really bad arthritis and a "bone spur surrounded like a lot of cartilage" (where I come from we call that an osteochondroma/ exostosis) that does not appear to be to be malignant but I should keep watching it just in case. Also I have swelling in my heel chords. He then said question and answer time. My question is if you could see arthritis and a bone spur and tendinitis how is that a normal MRI? He said it's normal for the abnormal. He prescribed me orthotics to be made.

- 4:32 go to the physical therapy department to see if they can get me in today because I refuse to waste another afternoon.

-4:37 they still haven't told me if they can work me in or not

-4:43 get called back. Orthotics are made to my specifications. Then told  my insurance may not pay for it.

So to sum it up. I have tendinitis with thickening of both of my heel chords from previous surgery brought on by exercise. I have a tumor on my left foot that needs to be watched for growth since it doesn't hurt. I have severe osteoarthritis in my ankles and feet. 

Do creams really help tumors?

4/2

I don't even know where to begin with this post.
So yesterday my ankle swelled up and I noticed tumors that have increased in size over the past year on my other foot. Today I called to get into my surgeon since he only works on Wednesdays he could only see me today during the time I had scheduled to go over my project for TAS with a professor. I cancel this meeting to wait over an hour to see the doctor. I tell him what's going on with my swollen ankle and tell him I've pinpointed the pain near my a a Achilles' tendon (since I have no feeling in the ankle itself from where he accidentally cut the nerve during a previous surgery.) He feels my heel chord and says shockingly that there is a knot here. He looks at the X-rays and says my ankle is too swollen to tell anything. He then leaves the room and doesn't come back. His nurse comes in with a brace and a sheet for a cream he prescribed. I asked to see him again because I wasn't done talking. I wanted to know what caused this or is it a tumor. I wanted to know what I should be doing. Should I stay off of my foot? Should I continue going to the gym? The nurse and the PA both couldn't answer these and said he left for the day. I clearly wasn't done with this appointment because all we determined is that I have a knot and swelling on my right ankle/heel. I didn't even get to mention the left side. Needless to say I will be calling in the morning to get my questions answered and to make an appointment with his partner.

Really late update

2/27/2014


Hey guys,


Sorry this update is so late. As most of you may already know, I had shoulder reconstruction surgery December 17. It was not fun. They did a nerve block instead of general anesthesia because there are less risks that way. When I got the nerve block for my shoulder they put injected the meds at my neck so my whole arm was dead for the whole day. While I was sitting in the OR and they were prepping me, I decided to play a game with myself and see if I could lift my arm. I tried so hard and failed. So a brief synopsis of the surgery:


Expected time 45min -- Actual time over 2 and a half hours
Expected damage minimal -- Actual damage total
My clavicle was jagged at the end so they resected the end of that just a tad.
They grafted on 2 cadaver ligaments to the ones that were torn completely.
They tied down all my bones and put them back into place.


The recovery was hell and is still giving me problems. After 6 weeks in a sling (with multiple infections, I might add) I was able to start physical therapy. I have been doing that for about 4 weeks and I have the Range of Motion that the doctor was hoping for. I still have to work on strength training and have another 8 weeks of therapy to go. The current problems are popping in the shoulder when I move it certain directions and pain. I feel the pain mostly at night. I have not gotten a full nights sleep since the surgery because pain is something that no matter how much I want to sleep through it, I just cant. All I want it a solid 8 hours (preferably 12) but I don't think that is going to happen any time soon.


I will keep yall updated on the shoulder but in the meantime, I will be having surgery on the opposite arm in a little over a week. They will be removing the plate they put in 5 years ago when they shortened my radius. Risks include the normal infection, death, blood clots, etc etc and the new risk of possible breaking the bone when they remove it. So that will be the start to my Spring Break 2014.


Hopefully I'll post soon.


-Crippling Scars



P.S. Friday, February 28 is Rare Disease Day (a day I wish we didn't have a reason to observe but sadly the reality is many of us are disease ridden)