Life Lessons from Losing My Smile
August 28th, 2013 -- the day I was diagnosed with Lyme Meningitis and Facial paralysis due to Lyme Disease. It was a hellish three weeks leading up to this day. Almost four months later I am still recovering, but I've learned many life lessons from this whole situation that I will carry with me forever.
1. Patience. Not only with myself during recovery, but with the doctors. It has been almost 4 months, but I'm still hanging in there confident that the left side of my face will still come back to life, headaches will be gone and I will get my full energy back. It took 4 trips to either the ER or doctor's before they finally decided to look more closely at my symptoms to find out what was wrong with me. There are some days that I wanted to scream at doctors who misdiagnosed me - but patience got me through this so far....
2. You are your best health advocate. The first time I went to the ER, the PA told me that the migraines, night sweats and dizziness were probably due to a virus and to go home and sleep it off. Deep down I knew that these weren't normal flu symptoms for me. Had I persisted, they may have diagnosed me the first time. The second time I went to the ER, they told me I had Bell's Palsy as a result of the shingles virus. I mentioned the headaches and night sweats the week before, but they told me it was probably unrelated. I should not have accepted this. I did my own research and found out that facial paralysis was associated with Lyme and forced my Primary Doctor to test me even though he said I likely didn't have it (he didn't even know lyme disease caused my symptoms) When I went to the ER the third time, I demanded more and asked a ton of questions that ultimately led to my diagnosis. As well, doctors were unsure of how to treat me and I forced them to contact Lyme Specialists who may have more knowledge. Over three months later, my insurance has tried to cut off physical therapy for my face but I demanded that I needed more to fully recovery. As well, the Infectious Disease doctors told me they don't do follow-ups -- I'm demanding them. You know your body the best and should always push the doctors by asking more questions and doing your own research.
3. I have the greatest friends and family. My dad demanded that I go to the ER the third time. I remember telling him, "they are just going to tell me that I have Bell's Palsy and it will get better." He wouldn't accept that and I'm forever grateful. As well - I had many friends and family visit and call me in the hospital. And how about my friend who made me dinner for a week and stayed by my side when I just laid on the couch... It couldn't have been much fun watching me suffer but it seriously meant the world to me.. For that - I will never take my friends for granted.
4. Strength. I never knew my strength.... MRI, Lumbar Puncture, CT Scan, IV's, PICC Line insertion. I did it. Attending two weddings with my PICC Line and seeing all of my college friends. I did it. Carrying on with work as usual with headaches and fatigue. I did it. Speaking at various events with facial paralysis. I did it. Running a half marathon, 2-10Ks and a 5K (and getting 1st place female). I did it. My sister told me that the Lord doesn't give you anything you can't handle.... Enough said.
5. Relaxation. BL (Before Lyme), if I wasn't working out hard core 6 days a week, I felt like a slacker. I started doing acupuncture on my face to get the nerve to reactivate. Every time I walk out of an appointment, I again find balance in my life. It's relaxing and refreshing. Instead of working out all the time, I do other stuff, such as yoga or read.. Of course I still run or spin, but I listen to my body more and don't overdo it. My body is still recovering and I don't need to delay healing.
6. Never judge someone's appearance. The first time I walked into Wegmans with my facial paralysis - people stared. It was awkward and awful and I went home and cried. But now I feel for those who have had a health issue and it causes a physical disability. If I see someone in a wheel chair or with a cane - I help them. Beauty comes from within and that will always be true.
7. SMILE! Mother Teresa once said "Let us all meet each other with a smile, for the smile is the beginning of love." BL - I always tok my smile for granted. I swear once I get my smile back - it won't be wiped off my face. A smile can change someone's day -- I'm going to change everyone's day around me when I get it back :)
8. Find the silver lining in everything. My motto through this all has been, "It could be worse." I could have permanent paralysis, I could have had brain damage, I could have been paralyzed. I find jokes to make fun of this all... Such as - yeah I woke up in New Orleans with a paralyzed face after a night out -- I literally drank my face off... Or - a tick bit me while running naked through a corn field... or use the pick-up line "Can you check me for ticks?" I swear, if I didn't find humor in this, I would have let the negativity get to me.
Lyme disease affects people differently. For me, I had meningitis and facial paralysis. Some people never show symptoms initially and end up with permanent joint damage and pain. About a quarter of Lyme disease patients never show a bull's eye rash after a tick bites them. I was one of those lucky victims. Lyme Disease is becoming more and more prevalent in Upstate NY. NY had 7,700 cases reported in 2012 and this number could be 10X's higher due to undiagnosed cases. As well, research funding has decreased by 50% since 2008 (from $150,000 to $69,000). With more cases happening in NY, I highly urge bills to pass that will fund further research. As well, I highly urge people to become more aware of signs and symptoms of lyme and urge your doctors to learn more about the disease. Please go to this website: Lymedisease.org
August 28th, 2013 -- the day I was diagnosed with Lyme Meningitis and Facial paralysis due to Lyme Disease. It was a hellish three weeks leading up to this day. Almost four months later I am still recovering, but I've learned many life lessons from this whole situation that I will carry with me forever.
 |
| Upper Left: Smile on August 19th Lower Left: Smile on August 20th Right: Smile on December 11th |
1. Patience. Not only with myself during recovery, but with the doctors. It has been almost 4 months, but I'm still hanging in there confident that the left side of my face will still come back to life, headaches will be gone and I will get my full energy back. It took 4 trips to either the ER or doctor's before they finally decided to look more closely at my symptoms to find out what was wrong with me. There are some days that I wanted to scream at doctors who misdiagnosed me - but patience got me through this so far....
2. You are your best health advocate. The first time I went to the ER, the PA told me that the migraines, night sweats and dizziness were probably due to a virus and to go home and sleep it off. Deep down I knew that these weren't normal flu symptoms for me. Had I persisted, they may have diagnosed me the first time. The second time I went to the ER, they told me I had Bell's Palsy as a result of the shingles virus. I mentioned the headaches and night sweats the week before, but they told me it was probably unrelated. I should not have accepted this. I did my own research and found out that facial paralysis was associated with Lyme and forced my Primary Doctor to test me even though he said I likely didn't have it (he didn't even know lyme disease caused my symptoms) When I went to the ER the third time, I demanded more and asked a ton of questions that ultimately led to my diagnosis. As well, doctors were unsure of how to treat me and I forced them to contact Lyme Specialists who may have more knowledge. Over three months later, my insurance has tried to cut off physical therapy for my face but I demanded that I needed more to fully recovery. As well, the Infectious Disease doctors told me they don't do follow-ups -- I'm demanding them. You know your body the best and should always push the doctors by asking more questions and doing your own research.
3. I have the greatest friends and family. My dad demanded that I go to the ER the third time. I remember telling him, "they are just going to tell me that I have Bell's Palsy and it will get better." He wouldn't accept that and I'm forever grateful. As well - I had many friends and family visit and call me in the hospital. And how about my friend who made me dinner for a week and stayed by my side when I just laid on the couch... It couldn't have been much fun watching me suffer but it seriously meant the world to me.. For that - I will never take my friends for granted.
 |
| My PICC Line. A catheter that is inserted into your arm and carries medicine to your Superior Vena Cava (heart) |
5. Relaxation. BL (Before Lyme), if I wasn't working out hard core 6 days a week, I felt like a slacker. I started doing acupuncture on my face to get the nerve to reactivate. Every time I walk out of an appointment, I again find balance in my life. It's relaxing and refreshing. Instead of working out all the time, I do other stuff, such as yoga or read.. Of course I still run or spin, but I listen to my body more and don't overdo it. My body is still recovering and I don't need to delay healing.
 |
| Working on getting my smile back :-) |
6. Never judge someone's appearance. The first time I walked into Wegmans with my facial paralysis - people stared. It was awkward and awful and I went home and cried. But now I feel for those who have had a health issue and it causes a physical disability. If I see someone in a wheel chair or with a cane - I help them. Beauty comes from within and that will always be true.
7. SMILE! Mother Teresa once said "Let us all meet each other with a smile, for the smile is the beginning of love." BL - I always tok my smile for granted. I swear once I get my smile back - it won't be wiped off my face. A smile can change someone's day -- I'm going to change everyone's day around me when I get it back :)
8. Find the silver lining in everything. My motto through this all has been, "It could be worse." I could have permanent paralysis, I could have had brain damage, I could have been paralyzed. I find jokes to make fun of this all... Such as - yeah I woke up in New Orleans with a paralyzed face after a night out -- I literally drank my face off... Or - a tick bit me while running naked through a corn field... or use the pick-up line "Can you check me for ticks?" I swear, if I didn't find humor in this, I would have let the negativity get to me.
Lyme disease affects people differently. For me, I had meningitis and facial paralysis. Some people never show symptoms initially and end up with permanent joint damage and pain. About a quarter of Lyme disease patients never show a bull's eye rash after a tick bites them. I was one of those lucky victims. Lyme Disease is becoming more and more prevalent in Upstate NY. NY had 7,700 cases reported in 2012 and this number could be 10X's higher due to undiagnosed cases. As well, research funding has decreased by 50% since 2008 (from $150,000 to $69,000). With more cases happening in NY, I highly urge bills to pass that will fund further research. As well, I highly urge people to become more aware of signs and symptoms of lyme and urge your doctors to learn more about the disease. Please go to this website: Lymedisease.org
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