With Thanksgiving preparations well under way, I decided to take a moment to relax with a cup of coffee and a delicious homemade cookie. It’s been a long year with more bumps than joy, but even so, I do have plenty to be thankful for.
I am thankful to be alive. Having come too close to death this year, I really am grateful for all of the trials and sorrow that life brings with it.
~~Without the trials we cannot truly know victory.
~~Without the sorrow we cannot truly know joy.
I am thankful for my family. I have a kind, loving, and considerate husband. In just a few days we will celebrate our 18th wedding anniversary. Sometimes I just can’t believe that I have known this man for 20 years. I have two beautiful and intelligent children who have brought me laughter (and tears), Pride (and shame), and so much joy.
I am thankful for my fur babies. Liberty, our German Shepherd/Golden Retriever mix, brings calmness and security to our happy little home while Maggie, our Border Collie/Schnauzer mix, brings laughter and fun to our happy home. They were my nurse maids–always at my side–while I was recovering from my illness this year.
I am thankful for my parents. They taught me to be an independent woman and a free thinking individual.
I am thankful for my sister. She is my closest friend.
I am thankful for all of the wonderful friends I have had the pleasure to know.
And finally, I am thankful for all of the little things in life. You know–that hot cup of coffee in the morning, the flowers that bloom in the spring, a good book to read, doggie kisses, and so much more. These are the things that get me through the tough times and the mundane of daily living.
I am truly blessed.
I hope you have a wonderful Thanksgiving holiday surrounded by the people you love most.
I am alive. I am so very glad that I can say that because I nearly died this year. Having a genetic condition that nearly killed me in June made me face reality—Life is but a fleeting moment in time. We all know this on some level. Some of us have had either friends or family die from disease, accidents, or self-inflicted causes. Some of us have had friends or family die from old age. Either way—we know that life is short. But, not all of us have faced our own mortality. Not all of us have said to our children and spouse “I love you” while lying on the floor, thinking “this may be the last time I say those words.”
If you have the time, I’d like to share my story with you. But first, you will need to understand the genetic condition from which I suffer—or just skip it and get to the dying part if you prefer. I will be brief on the specifics of the disorder.
I have a genetic disorder called Hereditary Hemorrhagic Telangiectasia (HHT) that affects about 1 in every 5,000 people. It is an indiscriminate disorder that affects all genders, races, and ethnicities.
HHT is a mutation of the genes that are responsible for the growth pattern of arteries and blood vessels. As most of you know, there are two types of blood vessels: arteries and veins. Arteries carry blood under high pressure (pumped from the heart) and veins carry blood under low pressure, back to the heart. An artery does not usually connect directly to a vein. Usually there are very small blood vessels called capillaries that connect an artery to a vein.
A person with HHT has a tendency to form blood vessels that lack normal capillaries between an artery and vein. This means that arterial blood under high pressure flows directly into a vein without first having to squeeze through very small capillaries. The place where an artery is connected directly to a vein tends to be a fragile site that can rupture and bleed. A blood vessel that is abnormal in this way is called a telangiectasia (tel-AN-jee-eck-TAZE-ee-ya) if it involves small blood vessels. Telangiectasias most commonly occur on the skin of the face, hands, and the lining of the nose and mouth. The telangiectasias on the lining of the nose cause recurrent nosebleeds—the most common symptom of HHT. An abnormality that involves a larger blood vessel is called an arteriovenous malformation (AVM). Some people with HHT will also have AVMs in one or more organs. AVMs occurring in the lungs and brain and can lead to serious complications.
I have had an AVM on my tongue burst in the past, and knew how to judge when one was getting large enough to burst. Three years ago, I was denied treatment for an AVM on my tongue that I knew would burst within the next few years.
I guess both the Doctor and HMO (Tricare) wanted to pass me along to someone else. In the military, we move an average of every 3 years. When something is wrong that a doctor doesn’t know how to treat, they can easily ignore you, knowing that eventually you will move and become someone elses problem.
I was right. In early April of this year (2014) the AVM on my tongue burst. At first, it bled for maybe 20-40 minutes every day. About one week later I had an episode of bleeding that lasted for over an hour. My husband drove me to the nearest ER in Amberg, Germany. The language barrier made the whole ordeal much worse as we tried to explain that I had a bleeding condition and not an injury. After much conversing, gesturing, and google translating, a doctor finally understood what was wrong with me. Germans use the old name, Olser Weber Rendu, for HHT. They simply call it Osler’s. However, that didn’t make much of a difference, because I was told that they could not treat me there and that I needed to go to Regensburg instead—that’s about 1.75 hours away! Well, the bleeding finally stopped while I was at the hospital and they sent me home.
I tried to make a doc appointment with my primary care physician, but because the Army is so understaffed, I could not get an appointment because a bunch of soldiers had just returned from Afghanistan. “Soldiers first” was all I heard from the appointment line operator for two weeks. I don’t mean to sound ungrateful, hateful, or even disrespectful, but in this case I think I should have come first! The soldiers were getting post-deployment check-ups. It’s not like they were sick, dying, or injured!
Once again, I was passed along by not only the doctors at Amberg Hospital, but also by the clinic on post.
Though my tongue bled off and on for a few weeks afterward, I gave up on seeing the doctor. The bleeding finally stopped entirely in early May—for a short time anyway.
Because of the frequent bleeding, I became anemic. Not terribly severe, but anemia is never a good thing. I continued to go on as if nothing was really wrong—wrong choice.
As I Lay Dying
In mid-June, the AVM on my tongue started to bleed a little. It got progressively worse every day for 4 days. On Thursday, June 19, 2014, my tongue began to bleed substantially at around 7am. I used an entire roll of VERY absorbent paper towels to try to stop the bleeding. I can honestly say that Viva paper towels are the best on the market. I held the paper towels onto the top of my tongue and squeezed, trying to create a clot. The paper towels became soaked through and useless before a clot could form. After about 2 hours, I gave up and just let it flow—swallowing and spitting out blood for another 2 hours. Remember, this is an AVM, which means that it is arterial blood under high pressure pumping through a smaller vein—in other words; the flow was steady and squirting with every beat of my heart. You may be wondering why I did not go to the ER after 2 hours. I didn’t bother for two reasons:
1) I thought it would stop eventually, and I assumed that it would most likely stop in the ER like it did before.
2) The doctors told me that they could not treat my disorder and as far as I could understand, I was not to go back for treatment of my AVM.
After 4 hours of steady bleeding, I started to feel light-headed. I called my husband and told him that I needed to go to the hospital. At this point, I was starting to get scared. I figured that at the very least, they could give me blood if I needed it.
My husband happened to be on the other side of the tank trail—30 minutes away. The situation rapidly worsened within 15 minutes of my initial call to him. I was half way up the stairs to gather a few things for the trip to the hospital when I suddenly became nauseous, dizzy, and my vision became fuzzy and spotted. I was suddenly hot and broke out in sweat. I sat on the stair landing and leaned against the wall with my eyes closed. I told my daughter, Erin, to call her father and tell him that I needed an ambulance. I noticed at this time that I had finally stopped bleeding.
Being the spouse of the NCOIC (Non-commissioned Officer in Charge) of the DES (Department of Emergency Services) is quite a benefit. Neither my daughter nor I knew the “911” number for Germany.
Lesson: Memorize the emergency services number immediately upon moving to or visiting a foreign country!
My husband called the Desk Sgt. and told him to request a paramedic.
Meanwhile, as I sat on the stair landing, I suddenly had the urge to pee. So, I gathered all my strength to descend the 6 steps and walk 5 feet to the bathroom. I made it to the bathroom entrance—and immediately collapsed.
The linoleum felt so nice and cool. It felt good to lay on that cool linoleum with my eyes closed. I wasn’t afraid. The pain ended. I could sleep and it was good. Somewhere in the distance, as if at the other end of a long tunnel, I could hear a voice.
I opened my eyes and saw my daughter standing over me. She is so brave, I thought. She is so calm. I wanted to get up, but I had barely enough energy to lift my head, which caused too much dizziness.
This is the moment when I realized that I might be dying.
I wanted my kids to know that I loved them. I wanted to tell my husband that I loved him. I wanted them to know it was okay that I was dying and I was not afraid.
My husband arrived just minutes before the paramedics.
They were all there. My husband, my son, and my daughter.
“It’s not so bad,” I said. “Dying isn’t so bad.”
I told them that I loved them.
The paramedics arrived. They took my blood pressure and oxygen saturation levels. My bp was 74 over 50 something. I think my My oxygen saturation was 90%.
I am no longer sweating. I am not hot. I am cold. So cold.
I no longer had enough energy to talk to anyone. I was tired. I wanted to sleep.
I was not and am not afraid of what comes after death, but before this experience, I was afraid of the dying part. I am no longer afraid of the dying part of death.
Dying isn’t so bad.
As you can see in the chart above, a bp rate of 74 over 50 something is VERY bad. The EMT arrived and I was quickly moved from the bathroom floor to the ambulance.
Thinking back on that day, I am certain about one thing—I do not want to die on the bathroom floor!
The EMT’s were concerned enough that they had a doctor flown in a helicopter to my house. That helicopter landed in the field behind my house.
I really wish I had a picture or video of that.
My daughter told me that my neighbors all stood out back, watching the helicopter land. One of my less tactful neighbors made a joke about it, and my daughter turned to him and said “that helicopter is for my mom” while giving him the evil eye.
The EMT started an I.V. solution for dehydration and to add fluids into my veins and arteries.
The bleeding only stopped because there was not enough pressure to pump the blood out through the AVM.
I vaguely remember the trip to the hospital in the ambulance. I vaguely remember those first couple of hours in the emergency room. I was so very tired.
Over the course of the next 5 hours, my bp rate slowly increased thanks to the I.V. solution.
The diagnosis was hypovolemic shock.
Hypovolemic shock, also called hemorrhagic shock, is a life-threatening condition that results when you lose more than 20 percent (one-fifth) of your body’s blood or fluid supply. This severe fluid loss makes it impossible for the heart to pump sufficient blood to your body. Hypovolemic shock can cause many of your organs to fail. The condition requires immediate emergency medical attention in order to survive. Source
I was told that if emergency services had arrived any later or waited too long to begin the I.V. solution, I could have died.
I may not have been as close to death’s door as I thought, but that is as close as I want to be until I am an old woman.
I vaguely remember the ambulance ride to the hospital. What I do recall is the EMT trying to keep me awake. He spoke clear English with a lovely German accent. It was soothing, but persistent enough to keep me awake. I also recall a lecture about waiting too long to go to the hospital. I promised him that I would never wait more than an hour, to which he replied—“no. you go right away. You have lost too much blood. An hour is too long.” So I promised him that I would not wait at all and I would go to the ER immediately if the AVM bled again.
Here’s another thing that I learned through this experience:
It is true that near-death experiences make the world seem brighter (i.e., colors are more vibrant). It makes food taste better. It makes every moment precious. It makes one re-evaluate their life and their goals for the future. It is also true that after a while colors are normal, food is food, and every moment is not as precious.
What is not true: your life does not flash before your eyes.
Recovery and Surgery
At the hospital, doctors and nurses swarmed me. I honestly do not recall much of what happened. I was admitted to the hospital. The staff wheeled me to an elevator. I think we exited on the third floor, but I am not certain.
It amazes me how different hospitals are in Bavaria as compared to the ones in the States. My room was stark. It was cold too. Though that is not uncommon in most U.S. hospitals, the most noticeable difference was the crucifix on the wall.
Though I am not Catholic, I must admit that this little plastic crucifix gave me hope, comfort, and a feeling that everything would be okay. It reminded me to pray and give thanks to God that I was still breathing.
I admit that germans know how to make a person cozy. The pillow and comforter were stuffed with feathers! Once the radiator was turned up and I was snuggled into that feathery softness, I was warmer and felt pampered. Sleep was coming for me, and I was grateful.
I will not bore you with the all of the crazy details, but I did eventually see a slew of doctors over the next 2 months. After lots of work, the wonderful staff at the Tricare office secured the best care possible. I had an echocardiogram, an endoscopy, and an MRI.
I have a Pulmonary AVM, and a small AVM on my duodenum (the first section of the small intestine).
Though I am not currently at risk of internal bleeding, I know that eventually—when I am much older—these AVM’s will bleed.
In August I had a laser treatment on various telangiectasias in my mouth and nose as well as the large AVM on my tongue (plus a smaller AVM on the tongue).
This is what I ate for two days while in the hospital.
That porridge looking stuff was absolutely disgusting!
The recovery was long. Iron supplements and healthy eating were imperative. I lived on homemade protein yogurt smoothies for the first 2 weeks and then slowly added soups, stews, and soft foods such as mashed potatoes to my diet.
It was months before my iron levels, red blood cell count, and plasma were normal. I lost about 20 pounds from my inability to eat much in the way of solid foods between April and September.
It was not all terrible though. I did manage to have some fun before my surgery. I attended the German-American Volksfest the weekend before my surgery. I drank lots of nutritious German beer and ate plenty of bratwurst.
I finally have the same energy levels as I did before the bleeding started and am ready to get back to a normal life of DIY projects and exploring Germany.
I hope you will join me for my next project–the guest bathroom make-over on a $20 budget.
If you made it to the end of this post, Thank you! I know it was long and tedious at parts, but I just felt the need to tell you why I have not been around, and to let you know that dying really isn’t so bad.
I would just like to take a moment to honor one of the greatest women of our time: Maya Angelou.
I was first introduced to “I Know Why the Caged Bird Sings” in high school. The images of her traveling by train with her brother as still as vivid today as they were when I first read the story.
I started reading her poetry when I was about 18 and still re-read her poems today. She is not only a refined writer, but she is also a woman who used her talents to bring change–for the better that is.
Though many of her poems focus on her race, they tell the truth about any person who has had to struggle in a racially and ethnically challenged environment.
As a woman, her poetry speaks to my desire for complete equality, but not at the expense of destroying men as many modern feminists preach.
She was (and always will be) a woman of grace, a woman of morals, and a woman of peace.
Thank you Ms. Angelou for the many years of work, service, and love that you brought to the world.
As promised, here is the long-awaited article on my Coffee Station!
Welcome to the second post in the series: Turning Drab Army Housing Into Our Home! As noted in the series introduction and the first posting of this series, I am a coffee fanatic and am lucky to have the perfect area for a Coffee Station. Here is my first general draft drawn up on my Galaxy Note.
As much as I would love to hide or move the water cooler, it must stay for two reasons: 1) There is nowhere else to move it that makes sense. 2) We use this water for making coffee and tea and for hydration. I am looking into some creative ways to at least “hide” the ugliness. You can read more about my ideas for the water cooler here.
Notice that my Idea drawing said “Wallpaper?” WELL…I couldn’t find any of that removable wall paper that was either cheap affordable or in my style. I am seriously trying to avoid painting, but after taking over 60 photos of this area, I realize that it NEEDS more panache. Therefore, I will consider this space almost finished.
Organizing the Coffee Station:
I used Ikea’s Grundtal Kitchen shelving system instead of a separate shelf and hook system because it offers more versatility.
The hooks are Fintorp hooks. I used these because they will not come off without unscrewing the Grundtal rails and the hooks have a sort of knob at the tip–which prevents the cups from falling off easily.
Grundtal Also has great storage add-ons for the shelf system
One of the things I love most about this area is the storage!
Here is the Coffee Station Cabinet–I hope it stays this organized!
I purchased these Krus storage containers at Ikea as well, but they are only available (as far as I can tell) at the Ikeas in Europe. They feature removable dividers and come in 3 sizes. As you know from my Family Command Center post, I LOVE organization!
Which brings me back to my Grundtal storage containers–which by the way feature an airtight seal…
These lovely airtight containers store our loose leaf teas.
And these lovely ladies are for brewing that perfect pot of tea.
It took me a few days to figure out where to put the sweeteners for tea and the coffee filters…but then I remembered that I had this cute little basket in my bedroom.
It was important that the cups we use every day were readily accessible–Hence the hook system.
Yup, those are Ikea cups…50 Cent Euro each 🙂
And now for the magical machinery that makes my addiction possible.
Because the only outlet in this area is a 220, we had to buy a new coffee machine, water boiler, and coffee grinder. I prefer a mill, but can’t spend the 89 Euro just now. So, the tiny grinder that you see peeking behind the coffee maker is our temporary solution.
I LOVE this coffee maker! If you a photographic memory, you noticed that the coffee maker in the first photo of this post was black and red. So what happened? A teenage boy, a ball, and a dog. Yup. The boy somehow managed to shove my coffee maker off of the counter and it slammed against the Command Center wall. After that…it didn’t work. So, we bought this one. And the bonus is that we now have two carafes! For some unknown reason the carafe was not inside the coffee maker when the boy had his little spaz moment.
So there you have it, my Coffee (& tea) Station! Simple, practical, and down right awesome*!
*Not tooting my horn–I am just so excited to have this in my kitchen!
Coffee Station Reveal
Now come on over and enjoy a hot cup of java or a lovely pot of tea with me in my little sitting room.
As promised, here is the article on our Family Command Center.
Welcome to the first post in the series: Turning Drab Army Housing Into Our Home! As noted in the series introduction, one of my priority tasks was to turn a blank hallway wall into a practical and usable space that will keep my family organized and on task.
As you may know if you’ve been following my blog, I have two teenagers, two dogs, and a very busy husband and I have ADHD (also know as forgetful). I will be attending intense 5 week courses through the University of Maryland soon and I’ve just picked up a part-time job on post. Life is about to become chaotic again–Yay! No, really–I’m happy about that!
As it is now, the kids bicker about chores–who did what and when (so does the hubby), so I spent hours cataloging the various chores that need to be done around here and created an amazing (at least I think so) spreadsheet. Here is what my first rough draft and testing center looked like for about a month. It worked out very well, so I decided to forge ahead and finish the project.
I spent several more hours pondering what the space would like, what I needed to buy, and how I wanted the space to function.
I printed out my pages and slipped them into plastic page protectors and then taped them to the wall. It worked out well for a test run.
Because I live in Germany now, and am not familiar with the best places to shop, I ordered almost everything that I needed online. Some of the following images are links to the items that I purchased online (photos that are links are noted).
I printed out my final spreadsheets and framed them. I use a wet erase marker to write on the glass. Each Sunday, they get erased and I change the dates, notes, and menus.
We are a family of “fairsies” so this requires alternating kitchen duty. I know that I have kids and most people with teens assign kitchen duty strictly to the kiddos, but we are all very busy (well maybe not me right now) and feel that taking turns lessens the burden. So, I came up with this chart.
The kids only argue when they together, so they have been paired with a parent. It’s working out very well.
And because I am a control freak by nature, I also create a task list for kitchen duties and a monthly task list.
After most of my products arrived and a trip to Ikea, I laid everything out on the floor along the Command Center wall.
I purchased the dry erase calendar and wet/erase markers (which I prefer) at my local PX (it’s like a target).
After taking care of sick kids and getting over the bug, I finally started mounting everything to the wall.
I’m going to share the OOPS moment with you so that you don’t make the same mistakes!
I mounted all of the frames to the wall using a level to make sure the frames were all very straight. I wanted a unified look, so I installed them flush against one another.
It was going to look fabulous! Except that I forgot that the only way to insert the glass is to flex the frame corners! I could not get the glass in there if my life depended on it! So, back to the drawing board I went.
I needed a spacer so that each frame was lined up as exact as possible–because I’m a perfectionist.
The solution was a dvd case.
*Hubby and I were NOT born in the 80’s–we were born in the 70’s, and this dvd has some cool highlights that we both sort of remember and remember well.
Anyway, here is how I used my “spacer”
All that was left to do was fill in the frames, mount the calendar, and add a hanging file system and my Ikea finds.
Only one thing remains: A large hook for my purse that will be mounted under the files.
One project down, several more to go. Stay tuned for the finished Coffee Station project!