Saturday, June 30, 2012


Well Dr. Grice and the team at the storm eye insitute has created a miracle. I am healing pretty good. I still feel the stitches in my eye, but I wear my shield so that I don't rub my eye. I have been put on restrictions such as: No lift, No bending over, and Do not get any water in my eye. I was told to do this for a week, but since I have Marfan Syndrome I am going to wait one more week. Since our tissue is not as strong and takes longer to heal then I am being overly protective of myself.

Thank you all for the prayers. During times like this people need prayer and a speedy recovery. I have the help of my husband and children so I am truly blessed. Thank you all.

Monday, June 25, 2012

Lens Transplant Ready

   Well tomorrow I will be going under the knife again. This will be my 10th surgery and I am very nervous. 28 years ago I had my lenses removed at Wake Forest Baptist Medical Center in Winston-Salem, NC. I still remember having patches, the continuance of eye drops and close supervision by family and doctors to make sure that things will heal properly.

   This time around I am having my right lens put in first. It is my "lazy" eye. I have already started putting in 3 types of eye drops to protect my eye, and to get ready for an open wound. Out of  all of my surgeries thus far, this is the most nerve wracking. I will no longer have to wear glasses, except maybe just reading glasses, but I will not have to worry about the heavy price tag of lenses, frames, and contacts. I told the doctor as long as I can still play video games way after my surgery, then I am ready for it.

   I have to say that I feel real comfortable with my doctor who will be performing my surgery. At the Storm Eye Institute here in Charleston, SC, Dr. Grice will be performing a life long dream of mine. I knew that in my daughters lifetime, that she would be able to have the lens transplant surgery. All of the test that I have had to go through was well worth knowing, that I am a candidate.

   The concerns that I have the most are another dislocated lens,  detached retina, or even blindness. When you have a surgery anything can go wrong. There are no guarantees at all. All you can do is pray and think of positive thoughts.

   In summary life is full of risk. If my doctors are confident and I trust them with doing the procedure I know that I am in good hands. Note though, that if you don't feel comfortable with any type of surgery or have a bad feeling about a doctor, don't take a risk. You are your own best judge to anything you do in life.

Have a Blessed Day

Wednesday, June 20, 2012

Moving and Having Marfan Syndrome

   Is it easy to find a doctor that knows about Marfan Syndrome? This is the number one question I am asked when my family moves. The answer to this question is ,"No". When we were in the United States Marine Corps and moving is part of the job. We have lived on the east and west coast, but I find it a challenge to find a doctor in our current location of Charleston, SC. We have made this our home, since getting out in March of 2010.

  I have found that in bigger cities I haven't had a problem finding a doctor. You really have to do your homework to know if the doctor knows about the disease, because I have caught many doctors that say they know and in the end they do not. I feel that some doctors need to be more truthful about this serious diseases such as this, because if he/she isn't, the patients life can be at risk. Here are some question that I ask doctors when I am in search of a new physician.

   What type of questions to ask?
  1. Do you know what Marfan Syndrome is?
  2. How long have you been in practice?
  3. How many Marfan patients have you had?
  4. Do you have any experience dealing with Marfan patients?
  5. Are there other doctors that you know that know a lot about the disease?
      I actually caught an orthopedic doctor here in Charleston, SC making up some type of explanation for my scoliosis. The doctor came in and told me that it was due to the Marfan Syndrome and that it was a ligament issue. I responded to him by asking, " How can it be a ligament issue, the burning feeling I have is more like a muscle"? The doctor said in response to my question, " Then it must be a muscle issue, your shoulder blades are not level." I knew then that I caught him in a guessing game of the cause of my diagnosis.

   Recommendations before moving to a knew town:
  1. Do research on the city that you are moving to.
  2. Research the hospitals in the area. 
  3. Ask your current doctors of recommendations on doctors in the area. 
   By doing this you will know exactly what is in stored for you health wise, and it will help you decide on if you really want to move to that town or city. I have had my share of research to do when we have had to move, and the number 1 thing for use is to live close to a hospital, because you just don't know what can happen to you. The last thing you want is to live a hour away from the nearest medical hospital. I try to not think of the worst thing that can happen, but it will ease your mind knowing there is help close by.

   On the National Marfan Foundation website they valuable resources for you to keep on file. I use the Emergency Information Packet for myself and my daughter. We have had many doctors and keeping a record of current and past doctors helps a lot. The website also has a Hospital Interview Form, which has detailed question to ask your doctor.

   I hope all of this helps. 

Wednesday, June 6, 2012

Joint Pain Today

   Today's weather here in Charleston, SC hasn't been the best for my joints. I have had numerous surgeries due to having loose joints:
  • Right collar bone surgery
  • 2 right knee surgeries
  • 3 left knee surgeries
   Sometimes my knees ache from the change in weather, but recently I was diagnosed with Scoliosis and Left foot tendinitis. With Marfan Syndrome from what I have heard from others, they developed scoliosis at a very young age, but in my case I have developed it later in life. I noticed upper back pain a year and a half ago. It was the only thing that I didn't want to develop from Marfan Syndrome, but in my case I did. I rather have my knees hurting than to have back pain.
   I was told by orthopedic doctors here in Charleston, that I have a curvature in the upper part of my back. Due to its location you are always using those muscles, so it is very hard to relax them. If my knee is hurting I can always prop it up on a pillow, but for my back I am not able to relax it. Now I am in Physical Therapy for my pain relief. I do simple exercises and I have therapeutic massages, which help only for a short period of time. I try to go swimming every other day to help strengthen my muscles as well. Thank goodness I love to swim.
   Since my back isn't getting better the change in weather just makes it worse. I am not able to do a lot of things with my kids or around the house. I am a mother of a 7 year old daughter and a 2 1/2 year old son, and they both are very active children.On days like today I wish I was Bionic Woman. Give me titanium joints, a knew back, and we will call it a day. I would love to go one day without pain, so now I am a weather predictor.
   I have traveled all throughout the US and to various countries and the only place where my joints didn't hurt as much was San Diego, CA. We were stationed at MCAS (Marine Corps Air Station) Miramar. Oh how I miss thee. The dry heat and steady temperatures did not affect my joint, whereas here in the south my joint are calling out saying, "It's time to go back to sunny San Diego". I really hope tomorrow is a better day, because today I have been set back, as far as chores goes. So if you have any type of chronic pain you are not alone. No pain no gain right?

Monday, June 4, 2012

What Keeps You Going?

What Keeps You Going?

  I can say personally that living with a connective tissue disorder, such as Marfan Syndrome is no easy task. Everyone with the disease goes through something different such as, back pain, joint pain, anxiety, depression, etc.. It is a disease that just what most would say, " just sucks". I can talk about the negatives of this disease for a long time, but right now I want to focus on one's self.

  Everyone has a drive to continue to live, but you have to be willing to do something about it. I can say that my drive has changed as I have aged. At 30 years of age, I can say that my family keeps me going and knowing I can make them happy with just the littlest things brings a smile to my face. Also, if I am feeling down I know that I can overcome anything as long as I set my mind to it. I always live by the motto", Failure is NEVER an option,". I have way to much going for me that the last thing I want to do is give up. 

 So, as you go through your day and reflect on what has happen, ask yourself this question, "What keeps me going"?

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