Quick and Dirty Update

It's been a LONG time since I've had the desire or opportunity to write. I'm sitting here at 3:30 a.m., wondering just how to begin relating all of the happenings of the last few months. I'm not sure I have the emotional energy to be very descriptive--- my brain is down to bullet points.

• February 28, 2015: D-man has a nocturnal seizure. It literally sounds like the child is fighting a criminal. D. starts seizure medication on March 3.
• April 5, 2015: D-man has another nocturnal seizure. This one is frighteningly awful. Time to see the doctor again.
• May 1, 2015: Mom goes in for carpal tunnel surgery on left hand.
• June 10, 2015: Mom goes in for carpal tunnel surgery on right hand.
• June 19, 2015: Mom starts Nuedexta for Pseudo Bulbar Affect. Can you say "Wonderdrug?" Within 2 weeks, the uncontrollable laughing and crying stops. I am feeling considerably more normal, emotionally-speaking. Best post-stroke medication ever!
• July 2015: More new medications for mom: Gabapentin and Clonazepam are finally helping me sleep. These darned angiomas sure do create a lot of symptoms. I am very thankful to good doctors! First full-night's sleep since November 2013. Mom finally loses 40 pounds! Sleeping has it's benefits.
• July 13, 2015: Superman has a 4.5 hour surgery to "install" his Taylor Spatial Frame. He had 6 metal rods inserted into his femur, and had his Achille's Tendon released. S. was at Phoenix Children's Hospital for 5 very traumatic days. I am thankful I was able to stay in the hospital with my poor little man.

• July through December: S. progresses from being in a wheelchair to using a walker. He does not tolerate physical therapy; I believe past physical trauma prevents him from tolerating any pain. S. has been unable to attend public school, so he has had the privilege of having a wonderful homebound tutor. Life consists of me trying to do PT with S., helping him with physical needs, helping him with school. Can I just tell you, the kid is "high maintenance."
• August 15, 2015: D-man starts to experience horrific headaches. Initially, he is treated for migraine. He starts a new seizure medication. Headaches continue and worsen.
• August 23, 2015: D-man has first trip to the ER for headache relief. It just continues. He can't sleep. He can't do anything except pray to die.
  
• August 25, 2015: D-man is finally admitted to Banner University Hospital. The treatment for migraine continues. No relief. Seeing you child in uncontrollable pain is the most disheartening, fearful, and anxiety-provoking event. Two kids in pain at the same time? This doesn't compute. D-man stays in the hospital for 3 days. He is sent home with new medications to try.
• September 4, 2015: D-man is readmitted to Banner. He feels like his head is going to explode. Oh great, the car died today, too.
• September 9, 2015: D-man has brain surgery to remove a bleeding cavernous angioma from right temporal lobe. Doctors finally admit angioma is causing severe headache.

  

  Blasted disease

  
  

  

  The culprit

  
  

  

  The incision

• September 11, 2015: D-man is finally moved out of ICU.
• September 14, 2015: D-man is finally released from hospital. Thank you to Scottsdale Bible's staff--- their love and help truly made difference in processing these events. Oh, darn. The refrigerator and freezer died today. So did the outdoor irrigation system.

  

  Friends sent gifts to S; what a joy!

• September 22, 2015: Our dear doggie has to have emergency surgery following a routine neutering procedure. Sherlock recovers.

  

  Sherlock discovers the sofa

• October 3, 2015: D-man officially starts to feel better! No more head pain.
• October 11, 2015: Oldest adopted son collapses after playing on stage at church. He is rushed by ambulance to the hospital. Looks to be another child with seizures.

  

  Exhaustion following a seizure

• October 12, 2015: Son has another seizure. Back in the ambulance. Back to the hospital. EEG appears normal. He is diagnosed with idiopathic seizures and is put on medication.

  

  At PCH

• November 5, 2015: More seizures for B. Doctor thinks it may be a combination of "regular" and psychogenic seizures. This looks to be more complicated than we originally thought. Good thing I videoed the last "episode." If seizures happen with more frequency, we will need to admit him for a 3-day observation.
• November 29, 2015: D-man is baptized! The Lord can bring wonderful things out of suffering!
• December 1, 2015: Dear Husband goes to ER. Choking episode due to an esophageal stricture proved life-threatening when he could not eat or drink--- and he had already taken a full dose of insulin for dinner. 
• December 2, 2015: B. has another "seizure."
• December 22, 2015: Superman has the "cage" removed from his leg. He is now in a full-length cast for 6 weeks.

Well, that is my very brief synopsis of the year. Sigh.

Of course, sprinkled throughout the year were lots of other events: birthdays, choral performances, resigning from old jobs, starting new jobs, umpteen doctor visits, therapy visits, school suspensions, a new grandbaby(!)and behavioral melt-downs. All the things (and more) you might expect from a family of 10.

Still joyful in times of trouble

Happy 13!

Happy 14!

Happy 12!

Can he really be 21?

What a beautiful voice she has!

Happy 19!

Look who's feeling better!

I think I am tired. But I am also very grateful to my family and to my church to emotional support. We will survive!

Bye for now

Trying to Stay Awake to Update!

A lot has happened in the 3 months since I've posted, but trying to stay awake to update is a challenge today! Sleep has been a real challenge again.

First, and perhaps most exciting for me is that I have officially lost all the steroid weight.. plus a few extra! (I so need to update my photo!) It took decreasing the exercise so that I could eat less. For some reason, my hypoglycemia has gotten considerable worse since the bleed. I simply could not figure out a way to balance more activity and reduce calories. I was checking my glucose levels before, during, and after exercise--- and yet I still always ended up "bonking."So, I figured I would take one thing at a time. I would like to lose a couple more pounds, and then it's time to problem solve with my endocrinologist about glucose storage issues. I have incredible compassion for any of you who struggle with blood sugar issues on regular basis. It is frustrating and often times confusing to find balance.

Second, I have gone through bilateral carpal tunnel release surgery. I still have the wrap on my right wrist, but the stitches come out in a week. The procedure was relatively easy, and I am very thankful to have had an excellent hand surgeon (Dr. Thull). Hopefully, the surgery will allow me to regain some fine motor skills. I've have had carpal tunnel for years, but it was not until after the bleed that the symptoms got much more difficult to manage. After dropping a few too many dishes, I reluctantly decided to go ahead with surgery. I am already glad I did. Almost immediately following surgery, my hand cramping stopped. Pretty amazing and encouraging!

Third, I am now taking a couple of new medications and have started vision therapy. The meds seem to be helping with anxiety, sleep, and foot cramping. The vision therapy helps me feel like I'm at least trying to improve my deficits. I do see my neurologist (as do my other angioma kids) this week and expect to have to increase one of the meds. Initially, I slept really well; now, I am back to waking up multiple times a night. But overall, the wakings are down about 50%. I am confident the regime just needs a little "tweaking."

The last major update is that our youngest is now scheduled for limb lengthening surgery next month. He will be in the hospital for 5 days, and then he will require 3 days physical therapy per week. Our little guy is having a Taylor Spatial Frame installed on his left leg. (Our son must have endured some sort of horrible accident as a toddler in Ethiopia: He has no knee cap, no ligaments, and has a very stunted femur. He will require total knee replacement as an adult.) S. will be in the frame at least four months. He will also need to have his achilles tendon cut because it is severely contracted--- so add a cast the the photo below. (This is actually one of the least gory photos I could find; this is major surgery and recovery). The good news is that the Taylor Spatial Frame can cause a bone to grow 1mm per day! That's incredible, I think!

Initially, our Superman will be in a wheelchair, and then, hopefully a walker of some sort. The surgery will need to be repeated when he is a teenager.

So, that is where the prayers are requested. This is major, painful surgery for our little guy. He is very frightened... and I guess, so am I. He will only have 4 weeks after surgery to recover--- and then he  must start school. Please pray for his physician (Mohan Belthur, M.D), for the surgical staff, for our son, and for my own anxiety.

The rest of the family is "hanging in there." It is a very stressful time (again) in our family. Two of our teenagers are still dealing with brain-related issues (more scans upcoming and medication to manage). Depression has taken a big swipe at several of us. My husband is dealing with his own medical issues, pain, and burden of paying for unending (and soon to be growing) medical bills. A few of our adopted kiddos are acting out--- reacting to the stress they sense. Life is just too much sometimes. All I can say is thank the Lord that this world is not all there is! He is our only hope, and without clinging to Him I simply couldn't do this. I just couldn't.

Life is Different (still)/One Year Radiation Anniversary

With drama and trauma comes the need for change. Some changes are a welcomed relief; some changes take time to adjust to. Change is hard for people who are not particularly patient with themselves.

I am one year post-radiation (today!) for brain stem cavernous angioma. After steroid use for 8 months, I managed to pack on about 20 extra pounds. As my endocrinologist said, the weight will be difficult to take off. She was right. I have never needed to lose more than a few pounds, so the difficulty of a "real program" was and remains one of the most challenging things I've ever done.

The first thing I had to do was to get moving--- not the easiest thing to do after a stroke. Honestly, I started off with just 5 minutes on the exercise bike. That was all I could manage. But my husband encouraged me, saying to start off with 5 minutes, but build it up by 5 minutes ever day. I could do that! Now, I work out 4-5 days a week, averaging 1-2 hours per workout. I change up my routine, but I usually do at least an hour of cardio (high-intensity interval training at least twice a week), followed by weight training.

I must say I am somewhat spoiled to have a gym in my garage. Not many people enjoy that luxury! Having an exercise fanatic, ex-sports medicine doc as a husband has it's benefits.

I do use a heart rate monitor, which makes the interval training much easier. I warm up for 10 minutes, then do intervals (running or cycling) to push my heart rate to 90% of its maximum. When I've hit that magic number, I back off the intensity dramatically and allow my heart rate to hit just under 70% of max. Once my heart rate has recovered, I repeat the cycle. It is also very inspiring to push a couple of buttons at the end of a long workout and see how many calories I've burned.

Another helpful gadget has been the Fitbit Watch. You simply wear the tracker on your wrist. It monitors your heart rate, activity level, calories burned, and sleep quality. I sync it with my computer, and it helps me log each and every item I eat and drink. You can set goals for yourself, like how many pounds you want to lose and how quickly you hope to do that. Unfortunately, the charts say I should lose a pound per week, but that has never been my reality. It is much slower. Additionally, I am hypoglycemic, and this program helps me analyze my intake and figure out where I need to change my diet. This is the easiest food diary I have ever used, and I highly recommend it.

The Fitbit watch is not an effective tool to monitor exercise heart rate. I have downloaded an app called Digifit which is supposed to fix this problem. I have not tried it yet.

Although I have only lost 13 pounds thus far, I feel confident I can slowly lose the remainder of the weight. I certainly have considerable more empathy for people who struggle with their weight. At most, I have only been able to lose a half pound per week. Frustratingly slow progress, but progress nonetheless!

Besides the maddening weight loss odyssey, school has been our other great challenge. I have been a home schooling mom for over 14 years! For the most part, I have enjoyed it immensely and have considered it such a blessing and a privilege to be such an integral part of my kids' lives. I have more books in my house than furniture.

Yet, life changes. Three months before my first bleed, I felt led to hire our first tutor to help with the kids. I continued to teach my youngest (8), and my tutor took over teaching my 12 and 13 year olds. I moved two other kids to an online program (Monarch and Texting Textbooks), and my high schooler continued with mostly online curriculum. Isn't it amazing that the Holy Spirit prompted me to make changes before I even really needed to?

Even with these significant changes to our day, this year has been very difficult. I am just not the same person I was. Before the bleed, most people would have described me as being fairly even-tempered and patient. Not so much anymore.... I lose my focus and my patience about a quarter way through the school day. I find it hard to multi-task, get very anxious over normal issues, and find the sheer noise of 7 kids pretty tough to tolerate. By one o'clock in the afternoon, I'm back in bed. The mommy guilt is heavy, as you might imagine. A lot falls on my two oldest (16 and 18) when mom just can't manage to "do the usual."

For the upcoming school year (2015-2016), we have made the decision to put the kids in public school. It was a decision fraught with tears and anxiety, but it is my reality. Reality is that we can not afford a private tutor anymore. Reality is I am not an inspiring teacher anymore. Reality is that all of my adopted kids are 1-5 years behind their peers in academics. Reality is that we need help from outside sources to come along side our family and assist these kids. School has been a huge challenge for most of my adopted kids; they deserve teaching that will challenge and encourage them. I can't do it anymore. There, I finally said it. I can't do this anymore.

I know many of you are home schooling families, so you can imagine the angst. You have a certain belief, expectation, and hope for your families. Home schooling came pretty easily. Sure, you had tough days, but the sacrifice was worth it. Your kids were thriving! People wondered how you could manage all you did--- but His grace enabled you to thrive, and your kids did well. The last 14 years have been great.

Now, all of that has turned on its ear. It all fell apart: the teaching, the learning, and the grace to do it. It is clearly a time for something new, and all I can do is pray for wisdom, direction, and help for my kids. It all comes down (again) to trust. Do I trust the Lord to take care of my family? I have to.

Life will certainly be different, come August. I just need to grip (firmly) onto His hand and hold on for the ride.

Any words of wisdom?

Ictal Fear

Ictal fear. It even sounds horrible, doesn't it?

Well, let me tell you--- it is.

For us, ictal fear came as a blood-curdling scream at 2:00 in the morning. My 16 year-old son yelled so loudly and kicked his bed so violently that I thought he was being attacked. My husband and I managed to make it upstairs within a minute, only to find our son sitting up, looking totally confused. Our son may be strong, but he had managed to kick and bend his metal bunk bed guard rail and move the large bed several inches across the floor. All this in his sleep, no less.

When we turned his light on, the episode stopped. All he could recall was the intense fear. No dreams, just fear. Poor guy stayed up the rest of the night, attempting to recover from the event. He was too afraid to even try to sleep again.

The first time this happened was about four weeks ago. My mommy instinct told me something was wrong, that this was not just a night terror. But weeks passed and no more problems. However, when something happens a second time, you know it can't be brushed off as mere dreaming. I knew he was having nocturnal seizures.

We were fortunate to be able to consult with our neurologist right away. My son has large cavernous angiomas in his temporal lobe and the amygdala. Our neurologist explained that ictal fear is intense, overwhelming fear generated by abnormal electrical activity in the brain. (Dr. Jeremy Payne spent a long time discussing seizures with my son, but honestly--- I could tell you only a few details. My stress level and anxiety seems to short-circuit my memory! ) Anyway, he put our son on Keppra, a seizure medication.

Keppra seems to be working just fine. Our son initially felt tired, but that soon wore off and he feels great. In fact, some of the outward anxiety that I had noticed has disappeared. We are hopeful that he had no more episodes, although we were told to watch for any "breakthrough" symptoms. And no, he is no longer on the top bunk of the bunk bed anymore. And his job of getting on the ladder to change air filters and light bulbs has been given to someone else. No driver's license yet, so no worries there. But pretty much, life is back to normal with some precautions.

For all of you readers familiar with ictal fear, my sympathies. It is a horrible thing. Just one more lovely part of Cerebral Cavernous Malformations. Can I again tell you how just I HATE this disease?

New MRI and Remembering the Wretched Past

My latest MRI of the brain shows that the radiation treatment is doing what it is supposed to be doing... the lesion is shrinking! I am not quite one year post treatment.

I do have new areas of "hyper intensity," which I am told is simply irritation from radiation. Why new irritation would show up almost a year later is something I do not understand. What remains very clear is that the brain is remarkable in its ability to heal itself, although it sure takes its time doing it! While I continue to have odd symptoms, I am much more stable than I've been in a long time.

Thank you, Lord, for a favorable report.

So with all of this good news, why am I so downcast? I imagine the sheer emotional roller coaster ride of the last 14 months is enough to induce depression. How 4 little bleeds can change a person's whole life is amazing--- in an amazingly horrible sense. Unfortunately, my current emotional status brings back lots of negative memories from my college days.

I started having serious headaches when I was in high school. By the time I was in college, there would be times I could not get out of bed. I would pop multiple Excedrin and attempt to shut all the light out of the room. The bouts of pain lasted several hours, usually. I never sought a doctor's advice for the headaches; I was a pretty stressed out college kid, so everyone wrote my symptoms off as stress. I just figured I was an emotional, anxious person.

I managed to get through college and started working. I was not the model employee, due to multiple illnesses and a tendency to melt down with conflict. I had a history of making emotional and impulsive decisions.

In my twenties, I recall many episodes of feeling the "ground move under me." My depth perception was off, but I couldn't figure out how. Again, I wrote all these symptoms off as being stress. I was in my twenties, trying to survive on a small income--- life was hard. I poured myself into my work (aerobics fitness instructor) and my social life.

Often times, I would not sleep. I could not sleep. I heard things... I didn't realize I was having auditory hallucinations. I just figured my mind was starting to slip, again due to stress. Sometimes when I could sleep, I would wake up with bruises on my arms and legs. Now, I understand I was probably having seizures. All I knew was that I was tired all of the time.

Last thing I remembered, I was at Tucson Medical Center with tubes down my nose. The medical team first thought to pump my stomach in case I had overdosed. Soon, they found out that I had in fact had a grand mal seizure due to a hemorrhaging cavernous angioma in my temporal/parietal lobe. The doctors also spotted another lesion in occipital lobe. The doctors put me on seizure medications, trying to find the one I reacted to the least.

Well, if you have never heard this before, listen now: having a massive seizure messes with your brain in a pretty dramatic way. And chances are, I had been having small bleeds (and nocturnal seizures?) for years without knowing it. At this point, I lost my footing. I was told to take seizure meds and to get back to life. But how? I wasn't a believer at that time in my life, so I didn't have any sort of a spiritual foundation. I was falling head long into major depression. I finally sought help.

In addition to behavioral therapy, I took Prozac, Lithium, and some other seizure medication. Whatever the drug combo I was placed on, it was not magic. The depression stayed with me and got worse. So as not to upset my family reading this, I won't elaborate. Let's just say it was as bad as bad gets.

Through some divine intervention and helpful medical advice, I was able to enter the Telemetry Unit at UCLA Veteran's Hospital in California. I don't even recall where it was. All I remember was being in this unit for several days, having my head hooked up to wires. While I did not have a seizure while hooked up, the staff recommended that I stop all medications. They felt I was toxic on something, and I had developed hypothyroidism. I left the hospital with no plan. No one ever told me to follow up with a neurologist or anyone.

After a few months, the headaches mysteriously stopped. I was able to get back to work and get back to life. I certainly had a lot to sort out, and by this time my family thought I was pretty nutty.

It is interested that at that time, only CT scans were available. If MRIs had been available, I'm sure that the doctors would have spotted the multiple lesions littering my brain. At last count, I have between a minimum of 16 lesions.

From about the age of 27 to age 51, I had very few symptoms with the exception of intermittent vertigo. The brain stem bleeds and then the supratentorial bleeds came as a total shock.

It is also amazing that only until recently have physicians begun learning about cavernous angiomas. I realize that my story is unfortunately common. Most patients with angiomas go for a long time with improper diagnosis and inappropriate (or nonexistent) treatment.  Most, if not all patients, endure cycles of depression, anxiety, or post traumatic stress disorder. While majority of angioma carriers live without any symptoms, many experience debilitating and painful lives.

I am so thankful to groups like Angioma Alliance that are drawing attention to the disease. We now know angiomas can be sporadic or familial. There are now a handful of physicians who better understand this disease. I am extremely pleased to say I have finally found a neurologist who understands cavernous angioma--- thank you to Jeremy Payne, M.D.

So what have I done with all of this? My biggest challenge has been to forgive myself and to forgive others who may have judged me. Having a physical disease that manifests itself as a psychological issue creates all kinds of baggage and hardship. For me, turning to my Maker and asking for wisdom has been an ongoing and critical need.

My second biggest challenge has been physical. The bleeds did leave me with some neurological impairment; the steroids left me with about 20 extra pounds. Let's just say trying to recover from stroke is a full-time job in and of itself. Additionally, my husband and I have had to make some major household changes so that healing becomes more of a priority. All of those details are for another post.

I firmly believe everything happens for a reason. I cling to that belief every day--- trying to stay patient, and learning to train myself to endure what God has allowed. I thought I was a fairly mature believer when I got sick, but time has shown me that I had a long way to go. Suffering has a way of showing you who you really are; it shines a light on all your flaws and weaknesses. While it is difficult to surrender your body to the Lord, but it is even harder to surrender your emotions to Him. I have had to learn how to allow the Lord to comfort me, and how to totally trust Him in everything. It is not a lesson that can be learned quickly. I believe the struggles will make me stronger--- if I just don't give up.

More MRIs and Other Ramblings

My dear daughter had her 6 month post-radiosurgery MRI yesterday morning. The angiomas are unchanged from the last scan; I assume that is good news! We also remain thankful that she has not suffered any major symptoms or neurologic impairment as a result of the brain stem lesions.

The most difficult part of my daughter's journey has been the chronic fatigue and head aches. I know most of you angioma sufferers contend with both of these issues. The fatigue dogs you; you can't do what you used to do, and nobody understands why you constantly refuse invitations because of the fatigue. You realize you aren't capable of you past schedule--- and at 18, that's a tough pill to swallow. And the headaches? Nothing alleviates them. Thankfully, the pain is not physically debilitating. But the pain is enough to bring a halt to most major activity, and it certainly puts a big damper on your energetic plans for your day. This is not the kind of life any of us had hoped for our daughter.

Most of us angioma patients find a way to manage these discomforts, even if that means just to "suffer in silence." But I think it may be harder (or at least different) for young people--- people who are just trying to manage life after high school-- to accept the challenges chronic disease brings. But of course, this is more than just a chronic disease: It is a genetic disease.

I would go as far to say that the majority of people tend to downplay CCM/KRIT 1. I suppose it is easy to downplay the disease if you are one of the fortunate ones who never develops any symptoms to the disease. But my daughter and I (and countless other people on Angioma Alliance and a couple of private Facebook groups) can tell you, this disease is not just an annoyance. We have headaches, all types of seizures, odd neurological sensations (pins and needles, numbness, tingling, burning), depression, anxiety, and an array of physical/neurological symptoms ranging from awkwardness to paralysis. Additionally, many people were misdiagnosed at the start of their disease. Some were told that they had MS; others were told all the symptoms were psychological in nature. In other cases, a person has to change his or her entire way of life to accommodate an unpleasant, chronic disease. Many have children who suffer with unrelenting seizures. Some parents have had children die. Some sufferers opt not to have children so that they do not expose another generation to to the disease. I don't say all of this for empathy. Rather, I say this to gently remind you that if you know someone with a chronic "invisible" disease, please don't minimize their feelings or experiences.

Many of the responses and questions I see posted on angioma groups have to do with people just wondering if someone else shares their experiences. Do others endure the symptoms they have? More often than not, when a sufferer is simply heard, and their feelings are listened to and validated--- they receive a true blessing. If you know someone who is in pain or deals with chronic disease, do them a favor and just listen. Don't tell them you understand if you don't; don't interrupt them and tell them of how hard your day was. People just want to be heard. They want to know someone cares.

I know those of us who suffer may seem so selfish and and self-absorbed. In fact, many of us are self-absorbed because the pain of suffering is so acute or interferes with every aspect of life. You may be tempted to just give up on a friend with chronic disease. Perhaps he or she doesn't seem to be making much progress... but I encourage you not to give up. As with any major life change, chronic illness has cycles. We must all struggle with the inevitable ups and downs, depression, and anger. We have to learn how to live all over again--- what is your new normal? What are your major triggers? What alleviates your symptoms? When do you call the doctor and when do you say nothing? But the most critical stage of recover is finding peace with your Maker. Knowing that you were given a disease to contend with brings inevitable questions to your mind. Why do I have this disease? Why does the Lord allow this? What can I learn from this? How can find new strength and determination when I feel like giving up?

If you struggle with a chronic disease, what do you find helps you?