I was released from the Hospital today. The hospital provides a cab home. If
I lived in London or England they would make sure I had a way back to appointments too. Part of the Care Package they provide through NHS.
Alas, I will be going to
the Airport tomorrow , May 2nd 2015 and making my way home.
2 weeks after my original plans.
I am tired, lethargic and hopped up on a ton of pain pills. (YAY for Copious amounts of Pain pills!)
Dolly and Bill went sightseeing in London today. They rented a place in
Colchester to be near me in the Hospital. It’s a tiny narrow flat, but it
works. I arrive and get in the door and collapse. My foot is bleeding and I
need to wrap it and take a shower and keep it elevated. I also need to pack
and figure out how to maneuver the airport and customs tomorrow.
Unfortunately the flight is full so I will not be able to stretch out. Everyone
is worried that I will get thrombosis in my leg and throw a clot.
If I can give you any advice it is this…..Get Travelers Insurance! Had I had it
I would not be paying for my hospital stay and you can ride home on a
private plane set up to maintain your medical status. These are things
nobody tells you. I found out after I returned home this was the case.
Everyone says , it’s too expensive and added money on trips, but it can be
your saving grace as well. I was traveling with someone whom payed for my
entire trip and gave me a stipend while there! They purchased ” Trip
interruption” insurance that covers extra fees and services but not medical. She Didn’t Know , No one told us until after.
Get the Medical.Not just for coverage ,but for everything.
I have two legs of the trip to home. Fly to NY stay overnight, then depart for
my parents home in NC. This is where I will recharge and heal and see Drs.
My parents have been extremely worried and mad and scared. While on the
trip I shared what was going on with my siblings and not them, I did not
want them to worry…So imagine the panic that erupted when they found
out the truth! They claim to have Great DOCTORs in the area they live and
want me to heal with them.
Not one to REALLY rock the boat. (I will Rock it a little, I admit).there was a lot going on and More to come so I said OK.
My parents were great! They did everything in their power to care for me.
We even mended some old broken bridges. I think they understood me
more. They apologized for not being more forthcoming with some info they
had on my condition. In honesty, they did not know what to think early on
and with certain issues, Dr’s provided no help.
I was also becoming VERY Self Aware…..
Something about traveling with half a foot and alone, makes me very Self
Aware. I knew upon arriving home I owed back rent to my roommate and
my car could eventually be repossessed ( it was) and I wasn’t sure if i really
had any idea of where I would live long term or anything. I was Very SELF
AWARE in that moment.
I hate having to rely on others to pick me up or transport me places.
I know that the consequences came from my choices.
honestly thought that I would come back from Europe and just Hustle, to
pay rent and for my car. Some say I shouldn’t of gone period ( My parents,
namely and some of you reading this). In my defense, It was a ONCE in a
LIFETIME Trip that was PAID for and I got a Stipend and I was gonna use
some of that to help pay towards the Car and Rent.
Being Self Aware…
It is what it is…I went to Europe and Anne Toelyn went into the Bin!
Oh,I just rhymed!
I went right to the emergency room in NC with my parents in tow. I
remember laughing and joking and talking about my adventures. I was
tired, they took me to dinner, I was x-rayed, my bandages checked and sent
home with appointments to go to the wound center in Shelby, NC the next
morning. I was also set up with medical appointments and signed up to be
reviewed for Disability.
I learned a lot that summer, in hindsight. Truths became apparent, things about my health I had ignored or maybe turned blind eye to. When you become self aware in your life, you begin to see clearly ,it is like taking off the rose colored glasses.
While at the wound center in Shelby. The Staff (whom are truly GREAT)
decided I would be a great candidate for the Hyperbaric Oxygen Chamber.
Do you remember the old bank deposit looking things that would take your
deposits to the window….Well, that is what they look like. You crawl in
them on your back hooked up to machines and wearing ONLY cotton based
clothing and they pump fresh oxygen in for an hour and they watch you like
a science project to make sure you don’t pass out or stop breathing or the
fan inside does not spark and start a fire. (Yes a FIRE!! LOL)
The oxygen is pure and supposed
to aid , not just in wound healing but also in overall health. Fine.
Every morning, every day I went to the Chamber. I got about 8 in and
on the 9th treatment, coming out of the Chamber I seizure out on the floor
in front of everyone.( remember this incident in future readings IMPORTANT)
The Nurse on duty was freaked out! I was like, How do
you think I feel. We were told the next day that the chamber can sometimes
bring other issues forward. We stopped the chamber visits. At this point I
was starting to have seizures more frequently, but have been told that its
hard to manage if the doctors do not witness it. I am still having them a
year later. (When this was written) I can’t get into seeing a neurologist without paying thousands up front (its now 2018 and I still cannot get in to see an Orlando based neurologist )…and we will talk about Medicaid in the next Blog Post. While waiting
for my foot to close we continued to see area Dr.’s . One GP told me straight
out he was not an endocrinologist and knew nothing about Klinefelter’s
and how it affects one, but he gave me an insulin for the high blood sugar
and wanted me to take 3 units and every 3 days that it has not dropped
raise the mg 3 more. By mid july I was up to 123 mg.
Later last year we found out that particular insulin was causing heart
failure in people whom had never had it before. Plus my organs were the
size of a 12 yo already ….so being Self Aware I got off of that Insulin.
When you apply for disability, you have to go through a physical with a
doctor you don’t know, and a mental evaluation.
I was taking my Dad along to all my appointments. He really is a trooper. I
took him for two reasons. I needed help mobility wise. and He could relay
the info to my Mom. I was often to tired and angry to talk and share and
sing Kumbaya at the end of each appointment. The fact that NO one could help me figure out the Medical reasons but everyone wanted to supply me with more drugs, was taking its toll . I was becoming Bitter and Sour.
When we arrived to the physical a nice Dr. entered the room. We first
did a mobility test. My Dad Stood behind me and caught me or helped
balance me…I failed that.
The Dr. then ran some other test and last told me
to close my eyes and tell him when I could feel him drag a piece of
Newspaper across my legs. I told the Dr. he could start at anytime and
heard my Dad gasp out loud. I couldn’t feel anything. The doctor had been
moving that paper over my legs for a few minutes already.
I have Neuropathy in both feet and legs below the knee. American Doctors have speculated it is the Diabetes…But Some Drs say its from the Amputation . He knew a little about my issues and had reviewed my file and told us that he could not tell us the
outcome of the application for Disability.
That said he then said to me…
.”I don’t think you will ever work again. I think you have maybe 10 years( really Important tidbit, remember this) before your body begins to shut down. Many things may come at you and your body will not be able to handle or fight them off. You have to be your own advocate in this.
My family had been told when I was diagnosed at
17yo, that a shortened lifespan can happen. I just think we did not believe
that it was a real chance. Being Self Aware this whole last year, I have
researched and studied and championed and found out that it is a real
chance. I could be in a total crux in 10 years. The Doctor I had in Europe
urged the same fate. Be your own Advocate. American Doctors treat
symptoms not the core. They will say you are diabetic and try and “Manage”
your diabetes. All KS males have high Blood Sugars…you have had them
your whole life and your body functions. My normal range for the last 8
months has been between 340 and 342 every day and on days with
infection up in the 600s. American Dr’s would expect I be in a Coma. He
went on to say they will try and get your numbers down to the US norm of
80-120, but when you get to that level, you could in fact feel really Low and
at death’s door. Less, I remind you above I talked about that crazy insulin
routine. You have to be your own advocate.
Ironically,I have spoken to two friends who are trauma nurses, they both
were nodding and in agreement that everyone is different and I just have
high numbers, That high Blood Sugars are just my thing…..
“Remember, your DR works for you and with you. If you cannot voice
your concern over what you do to Your Body, then they are not the right Dr.
for you!” Get a second and third opinion, it’s your Body. You have to
become Self Aware.
I often have made the comment to friends , that I be wrapped in Bubble
Wrap. It seems that literally or as the Brits say Litralarey (kidding) any bug
bite, scrape, bruises turn to dark spots and won’t close, I’m starting to look
like I have Leprosy! I have NO energy. When I go to Theme parks now I
have to get a Wheel Chair , One day of walking puts me in bed for 3 more
During this time, My Cousin Laura and her friend Jeri helped move
all my things from Atlanta to NC to put in the garage. Thank you Ladies. We
enjoyed Chocolate Martinis with Tito’s Vodka and introduced Cards Against
Humanity to my Parents! My MOM Won!! LOL There were a lot of times I
was eager to anger, depressed, solemn. These characteristics are common
among KS patients. Heightened, by current situations. Research and
education are Key in all situations. I found out Seizures are also common in
all KS males…they happen at different times in the male’s life, some as kids,
some lifelong since birth, some as adults…no rhyme or reason..not enough
research done. 47XXY ( Not enough Research is all you hear)
Please Be in All Things