Suzanne Rogers (Maggie Horton, Days of Our Lives) inspires fan with Myasthenia Gravis. Read more here--->>>
Photo: NBC
Suzanne Rogers (Maggie Horton, Days of Our Lives) was diagnosed with Myasthenia Gravis in 1984. This disease affected her facial muscles, and the medicine the doctors put her on made her feel ill, and her face appeared swollen while also suffering hair loss. She temporarily left the show after 11 years when the effects of the disease became increasingly worse. Her entire appearance changed, and she did not return to work for a year. Rogers returned to DAYS when her health became better. She wanted to educate viewers about the disease, encouraged executive producer Betty Corday to have her character be diagnosed with the disease. Corday agreed, and a storyline played out with Maggie learning she has myasthenia gravis. The actress went into remission in 1995 and has remained in remission since. In 2010, after her character's husband is killed off, Maggie began to notice some effects she experienced when diagnosed with the disease in 1984. Rogers' story inspired a fan named Kayla Dewberry who now has the disease. Read her story which she shared with us below!
Not Your
“text-book”
Patient…
The
Story of Kayla Dewberry
Let me start out by saying that I am
not a writer. Many of my doctors kept telling me that I should write a book or
start a blog and I always laughed it off; however, one day I decided that maybe
they were right. There might be people out there somewhere that could relate to
what I am going through. Even if I only help one person, then I have done
something good. I also want my two boys to know my story. They are young and
probably will not remember everything that I have been through while they were
young. But I do want them to read this one day and know why I felt bad some
days and did not feel like playing with them or throwing the ball to them. I
want them to know that I never gave up and that they were two of my main
reasons for never giving up, along with their Daddy. I also want them to know
that no matter how hard life gets, to never stop praying and never lose faith.
My name is
Kayla Dewberry and I am currently 29 years old. I live in a very small town
called Nanih Waiya, Mississippi. On April 21, 2015, my life changed forever.
This is the day that I gave birth to my second son, Stephen, but little did I
know what I would be facing afterwards. In February of 2008, during my senior
year of high school, I married my high school sweetheart, Chase. We had our
first son, Caysen, in March of 2008. Life was definitely hard being young
parents but we would not have changed it for the world. Both of our families
were there for us and very supportive. When Caysen was six years old, we began
wanting a second child. Chase was working full time just like he had done since
we graduated high school and I had just finished up my Elementary Education
degree at Mississippi University for Women. My second pregnancy was different
from the first and I had a lot of issues throughout the whole pregnancy. I took
Magnesium around the clock and even set alarms in the night and was on bed rest
for half of the pregnancy to help prevent the baby from coming early. When
Stephen was born, we fell in love and our family was complete. We had two
perfect little boys. Little did I know, my life was truly about to change.
During my
postpartum from having Stephen, I began experiencing some very unusual and
scary things such as: not being able to chew my food, not being able to swallow
my food, having a constant droopy eye, slurring my speech, and not being able
to smile. I had to swallow my drinks very slowly to keep them from coming out
of my nose. Also, nobody could understand me, because my speech was so slurred.
I could hardly eat, because it took so long to chew my food and get it
swallowed. This was all very embarrassing to me and also very scary at the same
time. I had no idea what was wrong with me. I went back to my OBGYN, Dr.
Virginia Nelson, in Meridian, Mississippi for my six-week postpartum checkup
and began telling her what was going on with me. I could tell that she was
worried too by the look on her face. She began telling me and my mom that it
sounded like I had a stroke. I loved Dr. Nelson and I knew that she would help
me find out what was going on with me. She had been my doctor through both of
my pregnancies and safely brought both of my babies into the world. Thankfully,
she ran the necessary tests and saw no sign of stroke, so she said that I
needed to see a Neurologist as soon as possible. She set me up an appointment
to see Dr. Paul Bradley in Meridian. I went to my appointment a few days later
to see Dr. Bradley. I explained all the symptoms that I was experiencing to
him. He looked at me and told me that he had no idea what was wrong with me. He
also told me that he was soon moving but he would do his best to diagnose me
begore he left. Dr. Bradley did many tests to see if he could give me some
answers. A few days later, Dr. Bradley called me to confirm that I had a rare
autoimmune disease called Myasthenia Gravis. I had read a little about this
disease, when I was researching my own symptoms; therefore, I knew this was not
good news.
Myasthenia
Gravis also known as MG, is an autoimmune disease that causes weakness and
fatigue in the voluntary muscles of the body. There is not cure for MG;
however, there are different treatments to help with the symptoms. In MG, your
immune system produces antibodies that block your muscle receptors; therefore,
with fewer receptor sites, your muscles receive fewer nerve signals, resulting
in weakness (Mayo Clinic). There are different things that can make MG worse
such as really hot weather and really cold weather. Also, there are some other
things that can make MG worse such as stress, overuse of muscles, lack of rest,
and certain medications. There are so many drugs to be avoided when a person
has MG. I carry a card in my purse at all times that tells about MG, lists my
personal information, lists my doctor’s information, and lists the medications
to avoid (see picture below). Each of my
closest family members also carry this same card in case of an emergency. Once I found out the diagnosis, I knew I had
to find a Neurologist that was experienced with treating patients with MG. I
found a Neurologist, Dr. David O’Neal, in Birmingham, Alabama. Dr. O’Neal was
three hours away from my home in Mississippi. On my first visit, Dr. O’Neal
explained the disease in detail to me and explained that it was a rare disease
especially for someone my age which was 25 years old at that time. He also told
me that he needed to run some tests to look at my thymus gland, which is
located in the upper chest beneath the breastbone. I had never even heard of a
thymus gland. He explained that some patients with MG have a tumor on their
thymus gland called a thymoma. If there is a thymoma then it must be removed. I
went and had the test done to check my thymus gland and the next day Dr. O’Neal
called me himself with the results. Dr. O’Neal informed me that I did have a
thymoma. Again, I was scared to death and began to cry. I knew that I had to
tell my family.
Dr. O’Neal
referred me to a cardio-thoracic surgeon in Birmingham, Dr. John Richardson. I
was very nervous on the day of my appointment with Dr. Richardson. My mom,
Stephen, and myself went to my appointment. My mom and Stephen went to all of
my appointments. Chase wanted to be there, but he worked and I always called
him as soon as I found out anything. Dr. Richardson came into the room and he
was very nice and considerate knowing that I am young, nervous, and very
hormonal from just having baby. He looked at my test results that showed my
thymoma and explained that it definitely would have to be surgically removed.
He explained the different ways that he could surgically remove it and all the
pros and cons to each way. My mom and I had no idea which option was the best.
My mom looked at Dr. Richardson and said, “if this was your daughter, what
option would you do?” Dr. Richardson sat there for a minute and he looked at us
and said, “if it were my daughter, I would crack her chest open to be 100% sure
that I got everything out.” So that is what we did. Luckily with me living
three hours away, Dr. Richardson planned the surgery for the next morning. I
explained to him that Stephen was only 3 months old and he agreed that Stephen
could stay in the hospital room with me during the day and stay in the lodge at
night with Chase since I would be in the hospital for several days after
surgery. We stayed at the lodge that night before surgery that was connected to
St. Vincent Hospital. The rest of my family and my preacher drove to Birmingham
that night as well to be there for the surgery the next morning. I was very
nervous, but I really had no idea how bad it was going to be.
On August
11, 2015, I had my thymectomy and my thymoma was removed. I remember waking up
with tubes coming out of my stomach and in severe pain. I had never hurt so bad
before and no matter how I moved or tried to lay, it hurt. My family was there
standing around me. I stayed in the hospital for five days. I also took
Intravenous Immunoglobulin (IVIG). IVIG is a blood product that comes from
between 1,000 and 15,000 donors per batch. It is a treatment choice for people
with antibody deficiencies. The nurses and doctors were all so wonderful to me
during my stay. I could not have asked for a better place to have been during
such a hard time. Needless to say, I could chew, swallow, talk, and smile much
better by the time I was discharged to go home (see picture below).
*You can see in the picture below my
face on the left that my eyes are droopy, I cannot smile, and my face is weak
prior to my thymectomy. The picture on the right was soon after my thymectomy
and my eyes are open and I could smile again!*
I continued
to see Dr. O’Neal every few months to monitor my medications and check my
progress with my MG. I was much better than I was prior to my surgery; however,
I still needed medications to help keep my symptoms down and help control my
weakness. Dr. O’Neal wanted me to see another neurologist whom he thought was
very good and he could consult with her. He referred me to Dr. Gwen Claussen. I
continued to see Dr. O’Neal as well. Now I had two Neurologists.
Dr. Gwen
Claussen was in Tuscaloosa, Alabama when I began seeing her. Dr. Claussen was a
very well-known and intelligent doctor known all over the United States. I
began seeing Dr. O’Neal every three months and Dr. Claussen every six months.
They talked back and forth on different options for me and discussed what they
both thought was best for me. They both decided that they wanted me to try
taking IVIG infusions regularly like I had previously taken in the hospital. The
medications that I was taking daily were helping, but just not enough anymore.
Also, I was trying to do everything that I could to avoid taking steroids every
day. After taking several infusions, I began taking them at home every two
weeks. Each infusion lasts about 4-5 hours. I was also blessed with the best
and sweetest nurse, Renee, who gave me the IVIG infusions at my home. Renee
lived in Tuscaloosa, so she drove 2 hours one way every two weeks to give the
IVIG.
Once my MG
was somewhat under control, I began having female problems. I was constantly
having cysts on my ovaries. I had a few minor surgeries to remove cysts;
however, the cysts continued coming back. On February 19, 2016, Dr. Nelson, my
OBGYN, did an ablasion, dilation and curettage (D&C) and removed my tubes
hoping it would help with the cysts. Unfortunately, this did not help. In the
meantime, I began having another problem. At this point, I had a 7-year-old, 10-month-old,
and a husband. I wondered what is next?
I went to
see my local family doctor, Dr. Michael Ard in Louisville, Mississippi. I was
having some bad stomach pain. He said it could possibly be my gallbladder. He
ran some tests locally which showed no sign of gallbladder problems. He told me
that he wanted me to have a HIDA scan just to be sure, because it did not
always show up on the previous types of tests. I went and had the HIDA scan.
The next day I got a call from Dr. Ard’s nurse that my gallbladder was
functioning 0%. Dr. Ard referred me to Dr. Stephen Tartt in Meridian,
Mississippi. I went to my appointment with Dr. Tartt. He confirmed that I did
indeed need my gallbladder removed. On July 27, 2016, I had my gallbladder
removed.
I was still
continuing to see my neurologists, Dr. O’Neal and Dr. Claussen, for my MG. I
was also still getting IVIG infusions every two weeks at my home. It began
getting harder and harder for Renee to start my IV for my infusions. She would
have to stick me two and three times sometimes to get a vein for the IV. Renee
recommended me getting a MediPort. She discussed the MediPort with Dr. O’Neal
and Dr. Claussen and they both agreed that it would be a good idea for me to
get the port for my infusions. On August 31, 2016, Dr. Tartt did a small
surgery and placed a MediPort in my chest for my infusions. The port is not
fashionable and it makes finding clothes more difficult, because I like to keep
it covered. The port is definitely a blessing when I get my infusions though.
The ovarian
cysts are still continuing to be a problem for me. The biggest cyst became a
red flag for me. Dr. O’Neal referred me to an OBGYN in Birmingham just to get
another opinion on the cysts. He set me up to see Dr. Robert Goolsby. Again,
here I go to see yet another doctor. I went to see Dr. Goolsby for my first
visit in September of 2016. He did his own tests and compared his measurements
of my cysts to some of my previous tests. He wanted to see if the cysts were
growing and if they were growing, he wanted to see how fast and how much.
Unfortunately, two cysts had grown together. Dr. Goolsby explained that he
believed that a complete hysterectomy was the best option for me. At this time,
I was 26 years old and no matter your age or situation this is hard to hear. I
knew that Chase and I were blessed with two healthy little boys and we were
fine with that, so I agreed to have the hysterectomy. On October 4, 2016, Dr.
Goolsby did the complete hysterectomy at St. Vincent Hospital. I did stay one
night in the hospital because with MG it can be more difficult to come off the
ventilator. I came through the surgery great.
Over the
next year, I continued seeing Dr. O’Neal and Dr. Claussen for my MG. I also
continued the IVIG infusions every two weeks. For the most part, the daily
medications and IVIG infusions had my MG under control. On April 11, 2018, Dr.
Claussen was in a horrible car accident and was killed. This was hard news to
bare. She had been so helpful to me. She was such a caring and thorough doctor
and was very well known.
Soon after
hearing about Dr. Claussen’s death, I began having some trouble with my wisdom
teeth. I tried to deal with it but soon had to make an appointment with Dr.
Andrew Martin, an oral surgeon in Starkville, Mississippi. I went and had some
tests done on my wisdom teeth then discussed everything with Dr. Martin and he
agreed that I should have them removed. On July 2, 2018, I went to Oktibbeha
County Hospital in Starkville and Dr. Martin removed my wisdom teeth. He chose
to do it in a hospital setting, because of my MG. He wanted to be precautious.
The removal of my wisdom teeth went well.
The problems
with me are still not over yet. I went to see my local Optometrist, Dr. Lee
Johnson, for my eyes. I knew things were more blurry than normal and I just could
not see road signs like I normally could see them. I had been wearing contacts
since I was in high school but I knew something more was going on. Dr. Johnson did
a thorough exam on my eyes and explained that I had cataracts. Now this was
hard to hear at 28 years old. Cataracts? He explained that they were likely
medicine induced cataracts from some of the medications that I took daily for
my MG. Again, this was another hard thing to hear from yet another doctor. He
referred me to an Ophthalmologist in Meridian, Mississippi.
On August
20, 2018, I went to my first appointment with Dr. Don Marascalco. He came in to
talk with me and he looked at me. The first thing he said was, “honey, how old
are you?” I said I am 28. He looked at me and said, “and you are here for
cataracts?” He was very puzzled. I was his youngest cataract patient. And from
this appointment on, Dr. Marascalco took me under his wing and took excellent
care of me. He did many tests of his own this week. He explained the needed cataract
surgery in detail to me. He explained that he did one eye one week and a week
later he did the other eye. On August 29, 2018, I had the cataract surgery done
on my left eye. The surgery itself went really well. I went back the next
morning for a checkup. Dr. Marascalco said the eye looked great; however, my
eye was still blurry. He explained that sometimes it takes a few days to clear
up and for me not worry. One week later, on September, 5, 2018, I went and had
the right cataract surgery. Again, the surgery itself went really well. I went
back the next morning again for my checkup. Dr. Marascalco explained to me
again that the eye itself looked great, but my eyes were still blurry. Dr.
Marascalco again said sometimes it takes a little time to get better, so I was
not worried. I continued seeing him every week for several weeks. He began to
become very puzzled and worried. He had never seen this happen before. He was
one of many to tell me that I was “one of a kind”. Dr. Marascalco sent me to
Birmingham to another Ophthalmologist in Birmingham to get his opinion. I went
to my appointment with Dr. Michael Vaphiades (Dr. V) to get his opinion on
October 1, 2018. Dr. V did many tests in his office during my visit. I bet he
did over five tests. I never knew there were so many tests for the eyes. After
a long day, Dr. V came in and said that I had something called Paracentral
Acute Middle Maculopathy (PAMM). Again, this is another very rare problem. PAMM
is an optical coherence tomography finding seen in patients with
retinal capillary ischemia and unspecific persistent scotomas. PAMM occurs as
an isolated phenomenon or as complicating feature of an underlying retinal
vasculopathy or systemic disease (Eye Wiki). Honestly, I don’t understand PAMM
very good myself. From what I can understand, the retina is not getting enough
blood flow. And let me add that every eye specialist that I went to from here
on out said the same thing, that whoever did my cataract surgery did a wonderful
job. The cataract surgery did not cause all of my upcoming eye problems. I
guess this was just God’s way of showing me that I had more serious issues going
on with my eyes. Dr. V wanted me to see a Retina Specialist located in his
building. Luckily, since I live three hours away, Dr. V was able to get me in
the next morning. On October 2, 2018, I went to see Dr. Jason Crosson. Dr. Crosson
again did his own tests on my eyes during my appointment. Like I said before,
there are many eye tests and I think that I have had them all. After all of my
tests, Dr. Crosson came into the room and basically looked at my mom and I and
said there was nothing that he could do for me. This was very hard to hear.
This was my eyes. Being through everything that I had, I was determined that
something could be done to help me. I
went back Dr. Marascalco to get his opinion. He suggested another
Ophthalmologist that he said was very intelligent. He set me up an appointment
with Dr. Ching Chen. Dr. Chen was in Jackson, Mississippi; however, he would
come to Dr. Marascalco’s office in Meridian once a week a few times each month.
On November 28, 2018, I saw Dr. Chin in Meridian at Dr. Marascalco’s office. He
first explained that he was fixing to retire, but he wanted to help try to
diagnose me first. He did a few tests in Meridian but there were certain tests
that could only be done at his office in Jackson. Dr. Chin did not tell me
much, because he wanted to see all test results first. He set me up an
appointment the next week at his office in Jackson for more tests. On December
3, 2018, I went to Dr. Chin’s office in Jackson for more testing on my eyes.
Again, I never knew there were so many tests. And yes, Stephen hasn’t missed an
appointment yet. He was such a good baby and just goes with the flow. He is
retiring the end of this month (at the end of the year). After my tests, he
comes in to go over all the results. Most of the tests were ok; however, he
explains there is one more test that he wants to do. He said there is a blood
test that he wanted to do. He explained that since I had MG which was an
autoimmune disease that he wanted to check to see if I had this particular rare
eye autoimmune disease called Autoimmune Retinopathy. This particular blood
test on the eye could only be sent to Oregon and it takes about six weeks to
get the results, he explained. And yes, I am sitting there thinking, “what is
next?” Dr. Chin did the blood test and sent it to Oregon Health and Science
University at the Casey Eye Institute in Oregon. He explained that by the time
the results came back that he would officially be retired; however, he would
get the results and go over them. He explained that he knew which doctor in his
clinic that he wanted me to see when he was gone which was Dr. Brian Tieu. He
explained that Dr. Tieu would send him the blood test results and they would
discuss the results together. On January 8, 2019, I went back to Jackson to get
my results from Dr. Tieu. I was so nervous to hear the results. Dr. Tieu
explained that my blood work was positive for Autoimmune Retinopathy. Not only
was this completely new to me, it was new for Dr. Tieu as well. We were going
to learn together. Autoimmune Retinopathy is a rare disease in which the immune
system attacks proteins in the retina, leading to loss of eyesight. Loss of
eyesight? Really? How could I call my husband and tell him this? How could I
call any of my family and tell them this? How could I explain this to my oldest
son? The disease is poorly understood. I continued seeing Dr. Tieu frequently
over the next few months to be monitored.
My
MG became worse in February of 2019 with a bad flare up. Can you imagine why I
would be having a flare up? Stress, maybe? Worrying? Dr. O’Neal suggested that
I come to Birmingham to have a five-day dose of IVIG. So, my mom, Stephen, my
grandmother, and myself load up on February 25, 2019, and head to St. Vincent
Hospital for the infusions. I stay in the hospital from Monday through late
Friday getting the infusions trying to help me get over my MG flareup. While I
was in the hospital, I talked with several different doctors about finding
another neurologist to work with Dr. O’Neal. I had thought about finding a
second Neurologist several times since Dr. Claussen passed away but just never
did it. Luckily, I got an appointment at the Kirklin Clinic at UAB in
Birmingham for the end of March with the help of some doctors. This was a very
long week being away from Chase and Caysen but I had to do what was necessary
to get over my flareup. So, I get discharged from the hospital on Friday and
have Caysen’s 11th birthday party at my house the next day on
Saturday. I made it happen. I wasn’t going to tell him that I had to cancel his
party, because I did not feel good. I just made it happen with the help from my
family.
On
March 25, 2019, I go see Dr. Kenkichi Nozaki at
Kirklin Clinic at UAB. I was very excited but nervous about getting another
doctor for my MG. Dr. Nozaki came in and talked to me and asked me many
questions. He agreed with everything that Dr. O’Neal was doing for me. He did
have some suggestions to add. He mentioned two other different options. The
first was a plasma exchange and the second was a new infusion for MG called
Soliris. He was more favorable to the Soliris. He just explained the cost was
extremely high, way higher than the IVIG. He told me to think about it and let
him know. At this point, I tried not to think about costs of medications,
treatments, doctor’s appointments, etc. I try to do whatever is necessary to
get better; however, this is very hard to do sometimes.
It
is a good idea to randomly have your thymus gland checked after a thymectomy.
There are times when the thymoma can grow back. This is very rare, but it can
happen. On July 23, 2019, I went to my local hospital in Louisville, Mississippi
to have my thymus gland checked. Right after the test, my mom, both of my boys,
and myself went shopping out of town. Soon after we started shopping, my phone
rang and it was the hospital. I was told that I needed to get back to the ER as
soon as possible, because something showed up on the test. We all loaded up and
I drove very quickly back to the hospital. I had no idea what I was about to
find out. And let me add that Chase is out of town working in Texas. All of my
family and preacher met us at the hospital. We waited and finally went back to
get the results. The doctor came in and told me that I had air in my chest wall.
He said I likely had a hole in my lung or esophagus and that I needed to be
taken to Birmingham by ambulance right then. I soaked all this information in
very quickly and just started crying and praying to myself. And again, I knew
that Chase was miles and miles away and he had to be told, too. While I was in
the ambulance gong to Birmingham, Chase was flying from Texas to Birmingham to
meet me. As soon as the ambulance doors opened at St. Vincent Hospital, I saw
Chase standing there and I could tell he was just as scared as me. I stayed the
night in the hospital (we were late in the night getting there anyway). The
next morning, Dr. Richardson came in to see me. He explained to me that this
was not uncommon to have that extra air in your chest wall. My prayers had been
answered. It was so good to hear some good news.
Everything
is still going on with my eyes. Dr. Tieu suggested that I go to the Bascom
Palmer Eye Institute in Miami, Florida to see what they said about my eyes.
Again, I am just thinking about the cost of going Miami; however, when it comes
to your eyes, you just forget about the cost and do it. On May 8, 2019, Chase
and I fly to Miami. I have never flown before, so this was yet another new
experience for me. The next morning, we go to the Bascom Palmer Eye Institute
to see Dr. Janet Davis. Her reviews were wonderful so I knew I was in good
hands. We were there all day long. We did not leave until after 6pm. I had
different tests all day long before I saw Dr. Davis. I was a nervous wreck. Dr.
Davis called us in her office and went over all the tests with us. She
explained that I did have the positive blood tests for Autoimmune Retinopathy
but that she did not believe it was “active” at the time. She did continue to
say that I did have PAMM that I had been diagnosed with previously. This was a little
relief to hear; however, I was still worried because it was my eyes and my
eyesight on the line. I went home and
continued seeing Dr. Tieu for my eyes. He told me that there was one test that
he suggested that I have done and the nearest places that had the particular
machine to do it were Miami, Florida and Houston, Texas. I chose Houston,
because it was close enough to home to drive instead of flying. So, on August
27, 2019, Chase and I drive to Texas for my appointment in Houston. On August
28, we go to my appointment at the Houston Eye Clinic for have the ERG test
done on my eyes. The test went very well and everything was no better and no
worse. Basically, I still had the
positive blood for the Autoimmune Retinopathy but it was not active.
After
a lot of thought and research, I decided to start the Soliris infusions
recommended by Dr. Nozaki for my MG. Before you can begin taking Soliris you
have to take Meningitis shots. After the shots, you wait two weeks and can
begin the infusions. You have to take them in a certain order for so many
weeks. I also carry a card with me at all times that lets anyone know in case
of an emergency, that I take Soliris (see picture below). After taking them
that way, I began taking them on the same day as my regular IVIG. So currently
I take both IVIG and Soliris every two weeks at my home. It takes most of the
day to take both treatments. I have to take both Tylenol and Benadryl before
both infusions. I typically feel tired and worn out the day of the treatments
and the day after the treatments, then I feel good for over a week. Usually
about two days before the treatments are due, I typically begin to feel weak.
Currently
I am right at celebrating my 30th birthday. My life forever changed
in 2015 and will probably never be the same. So much has happened to me over
the last couple of years, but through a lot of prayer, tears, caring doctors,
my family, and friends, I made it through all the storms. I have always been
told that God does not give a person more than they can handle, and I truly
believe that with all my heart. I am not going to lie, there have been many
times where I wondered how much more I could take, but I never lost my faith.
Caysen is now fixing to celebrate his 12th birthday and Stephen will
soon celebrate his 5th birthday. He will start Kindergarten this
year, so it will be different at home every day without him. He has been to 99%
of all my doctor’s appointments and hospital stays. He has been the best
baby/toddler through it all. Chase and I recently renewed our wedding vows and
it was so sweet to be surrounded by our closest family. We are also fixing to
celebrate 12 years of marriage. I am currently still taking many medications
daily for my MG and my eyes, and I am still getting IVIG and Soliris infusions
every two weeks at my house. My MG is somewhat stable right now, but I do have
good and bad days. There are many days where I do not want to get out of bed or
have no energy to do anything, but I have three reasons to make myself get up
and do what needs to be done: Chase, Caysen, and Stephen. Those three get me
through the bad days and the good days.
I
cannot say enough how blessed I have been to have found the best doctors
through the last several years. Each one of them hold a special place in my
heart. These special doctors include: Dr. Virginia Nelson, Dr. David O’Neal,
the late Dr. Gwen Claussen, Dr. Don Marascalco, Dr. Lee Johnson, Dr. Brian
Tieu, Dr. Ching Chen, Dr. Kenkichi Nozaki, Dr. Michael Ard, Dr. Stephen Tartt,
Dr. John Richardson, and my infusion nurse, Renee Barker. Each of these doctors
and my nurse have always been on top of things with my health. They were always
a phone call away if I needed anything no matter if it were day or night. I
think each of these doctors have all told me more than once that I am not your
“normal” patient or your “textbook” patient that you learn about in school;
however, none of them every gave up on finding answers to help me or stopped reaching
out to others for help or answers. Thank you to each one of you from myself and
my family.
Posts
COMMENTS