One Year Anniversary

designed by Jane Foster

Yesterday was a big day. It was my Dad's birthday, my husband's birthday, and my one year stroke anniversary. And honestly, I was in the mood to celebrate! God has blessed me with a wonderful earthly father, a strong and loving husband, and an excellent medical care team. And my kiddos? They are pretty fantastic, too. I am very grateful.

The last week has been a huge recovery week. I guess my brain finally got the message that my adrenal system was good to go. My thoughts are more clear; I can stay more focused on a task. I am not exhausted all the time, although I still take regular naps. I am feeling energized from regular workouts, and I feel significantly more positive and jovial. It is rather startling that this journey started a year ago. In some ways, this has been the longest year of my life.

As I look back in my journal, I see the slew of symptoms I initially developed. Now, the only symptoms that remain are the numbness (and some weakness) on my left side. I have limited numbness on the right. At least 75% of the numbness has never improved, although I understand that neurological recovery can happen at any time--- even years after a stroke. Nonetheless, even if the Lord choses not to allow for my full neurological recovery, I am grateful to have the function I enjoy.

So how has a brain stem stroke changed my life? I think it has simplified things... and clarified others. My day is simpler.  Due to my fatigue and decreased patience, I had to hire a tutor for my kids. Now, I only teach one child--- which only takes a couple of hours daily. Not only did this school change help me with recovery, but I think it also helped my kids to de-stress. (If you're not hanging out with a stroke patient every single moment of the day, life is more relaxed.) I workout, teach, and then do the household tasks. I don't run too many errands. I don't plan more than a couple events per week.

I have also not worried so much if my house is a mess, if my refrigerator is not full, or if my bathroom scale is still 12 pounds higher than it should be. In the words of my brother, "It is what it is." I only do what I have to do, and I give myself the grace to sleep or do nothing if I need to.

Having a stroke has also clarified life. What's really important? What has this event brought out in me that is not too attractive? What does the Lord want to teach me?

In this world, all that mattered anymore was my family. I did whatever I could do to love them and to protect them (e.g. revamping wills, writing love letters to them in case I died, speaking affirmation to them). I also never stopped going to church. Even if I cried throughout the service, I knew I needed to be in the company of other believers. I'm sure I was a joy to sit next to! I also made sure I was continually "right with God." I quickly confessed known sin; I asked for forgiveness from those around me if I had messed up. I didn't take one moment for granted anymore.

Unfortunately, I also soon discovered that I was not the pillar of strength, patience, or perseverance. Illness brought out some ugly things in me. I retreated from friends. I didn't return phone calls or emails. I can not count the number of times I lost my patience, prayed to die, or screamed at my kids. At times, I found it impossible to even pray or even ask God to heal me. I never lost my faith, but I lost my ability to even form prayers in my mind. I felt spiritually numb--- not questioning why I was suffering, but not really being able to climb out of a kind of limbo. I had to rely on others to stand in the gap for me and pray for me when I simply couldn't. It is a very humbling experience to feel so emotionally labile and fragile. I couldn't do what I knew I should do. I couldn't make myself be "more spiritually mature." However, God was so patient with me. I never felt guilt or condemnation; He just waited for me to return to Him.

And return I did. I was slowly able to return to reading devotionals and then the Word. But what I credit with my recent recovery is the return to service. The Lord showed me something to do! He gave me a task! (see http://www.gofundme.com/gkh5qk)

After praying about this new venture, I wholeheartedly gave myself to this project. The Lord used helping someone else to pull me out of my stagnant life. I find it very difficult to contain the joy I have in my heart right now. God is good; He is good all the time... you just need to wipe the tears from your eyes and open your heart to what He wants you to do for someone else. The Lord may not show you what He wants you to do right away, but if you just ready yourself and make yourself available, He will show you what path He wants you to take. I am so thankful He didn't lose patience with me. He gave me the time I needed to recover, and then He gave me a new passion to help a sweet boy.

If you would like to share in my joy and help little Alazar, please use the Go Fund Me link http://www.gofundme.com/gkh5qk

Long-Awaited Update

The morning of August 18, 2014, I awoke to what I feared were new symptoms. I could barely lift my left shoulder; my hip flexor was totally weak again. My entire left side, from head to toe, were numb and weak. The only difference from the initial stroke symptoms, was that I had no vertigo or crippling fatigue. I did have new symptoms of headache and nausea. Yet, because of my history of up and down symptoms, I waited to contact my neurosurgeon.

Two weeks later, the symptoms had not improved. I could no longer ignore the possibility that something was amiss. I reluctantly called my neurosurgeon and scheduled an appointment. I waited two weeks to get into see my physician.

Dr. Willis did order a repeat MRI, which I completed on September 24, 2014.

Then I waited until TODAY, three weeks after the scan to find out the results. I must say, the wait was not easy, and I was not the model of patience.

Fortunately, although the scan shows I have swelling (Dr. Willis claims it is not true edema) around the brain stem and in other areas of the brain, Dr. Willis and Dr. Kresl (radiation doc) believe the swelling is normal for six months post- radiation. Because my doctors did not want to put me back on steroids, the doctors recommended nausea medication and non-steroidal anti-inflammatories. I will need another MRI to monitor the swelling--- probably in three to six months, depending on how my symptoms are progressing.

Both doctors said the brain stem angioma looks better, meaning it is scaring properly. I have had no additional bleeding.

Dr. Willis also took me off of Vimpat. He said that without a documented seizure, he had to advise me not to take the medication. I had started have significant side effects from the medication, and he felt this would only impede my neurological recovery.

Bottom line: Time will tell if my symptoms will improve or vanish. I am almost at the one year mark since my initial brain stem hemorrhage. Indeed, life has improved. The vertigo and anxiety have significantly lessened. I am stronger and more confident, due to working out five days a week and continuing my vestibular and physical therapy.  Emotionally and spiritually, I'm stronger. I guess if I look at the big picture, I have improved an incredible amount. I think it is just the human in us that simply wants a pain-free, perfect life.

All in all, my news is good. The only bad news I can find in all of this is recognizing that I may forever have up and down symptoms. Since radio surgery does not remove the lesion, this nasty angioma will continue to rub up against different areas of the brain stem. Some days are okay; some days all I can do is sleep. I am still struggling with the reality of brain stem cavernous angioma.

I have considerably more empathy for those people with chronic disease. I understand when people describe their lives in terms of a date--- a life pre-stroke, and a life post-stroke. I understand how all of life can take such a drastic turn in an instant. While it remains a challenge to not let an event define my life, I find comfort knowing that the Lord has a purpose in all of this. I can't say that I know what the purpose is, but I am striving to continue His work while I am still on this earth.

My daughter, who also had radio surgery for a brain stem angioma, is just over three months post-radiation. Thankfully, she has had no neurological symptoms. She remains quite tired, and somewhat downcast. We can only hope that time will help her recover her positive and joyful disposition.

I appreciate the continued prayers of my friends and family. Thank you.

Re-check at Phoenix Children's Hospital

My youngest son had his re-check at Phoenix Children's Hospital yesterday. For those of you who don't know the story, my son has a limb length discrepancy and other related knee/leg issues. We were told that prior to his coming to the adoption agency in Ethiopia, he most likely crawled into a cooking fire. His left knee and left elbow have significant scarring. In fact, it was this scarring that kept him on the adoption wait list for longer than usual. Prospective adoptive families feared he had been abused in some way (we did not fear that; we just saw his beautiful smile!). Lately, he has been in more pain and exercise is difficult. His weight has climbed, and his limp is worse.

The news wasn't great, although I am so thankful we have access to quality medical care. The physician (Dr. Mohan Belthur) believed S. most likely had a severe fracture in Ethiopia that may have been treated with fire to prevent infection. Of course, this is only conjecture. He certainly may have "simply" fallen into a fire. Anyway, S.'s growth plate was severely damaged; he will need an MRI to evaluate the extent of the injury. He completed lacks a knee cap, something I did not understand. He is looking at at least 3 surgeries--- 2 limb lengthening procedures (the first one in about 1.5 years and the second one around the age of 16) and perhaps some ligament repair. Knee replacement has also not been ruled out, but that will most likely be at a older age.

My son also needs to consistently wear an orthopedic shoe, get some physical therapy for a weak quadriceps and tight achilles tendon, and lose weight. The weight loss issue will be difficult; for anyone who has dealt with adoption-related food issues, I'm sure you can empathize! S. always eats like he is starved; food fills a physical and emotional void.

We sure would appreciate prayers for our Superman. This seems to be our season of medical issues.

Vimpat

I knew it would be a normal study. Even after trying to deprive myself of sleep in order to perhaps
encourage a seizure--- the 60-minute EEG came back clear.

My neurologist was not too surprised, either. She said it is pretty common to get a clear EEG just because it is such a short snapshot of time to analyze brain waves. Nonetheless, she felt quite confident recommending Vimpat, an anti-seizure medication.

The reasons behind taking seizure medication with a clear EEG are these: first of all, my MRI is scary. I have tons of lesions in areas usually deemed epileptic (temporal lobe). Second, I have a history of both a grand mal seizure (albeit 26 years ago) and (perhaps) have had several partial seizures. In my case, the partial seizures felt like hypoglycemia coming on; they then progressed with tachycardia, a "creepy crawly" ice-cold water feeling on the back of my head, severe chills, and then uncontrolled crying (while I'm telling my kids, "I'm fine, I just can't stop crying.") The episodes made me feel a bit panicked, and once I did have shortness of breath. That's what made me ignore the episodes initially--- maybe it was just a panic attack? My neurologist said my symptoms did point to partial seizures, which have many different manifestations, including the symptoms I described.

But the most convincing reason to start seizure meds was the possibility of what could happen to me if I did have a seizure? What if I'm driving a car-load of kids? What if the partial seizure becomes more generalized and I fall at home? What would a seizure do to an already "dinged" brain? My neurologist did not like the possibilities and strongly encouraged me to be on medication. I started taking Vimpat the day after the EEG.

Regarding Vimpat, so far so good! Initially, I only felt a bit tired. By the next day, I had some occasional dizziness and then some itchiness. My hearing got even worse, due to the incredible ringing in my ears. Yet, after a few days on the medication, all the side effects mellowed. Only fatigue remains, and I'm pretty much tired all the time--- so what's a bit more?

Today, Sunday, was the first day of taking a full dose (100m.g. twice a day). I don't seem to feel any different. I am so thankful; I am typically the Queen of Side Effects or Paradoxical Effects. Could it be that I've found a good medication?

Lots of Tests

Since my last post, much has transpired. Fortunately, most events and happenings have been positive--- or at the very least, informative.

I had an ACTH Stimulation test to measure my body's response to cortisol. The test was important, as it would determine if my body's adrenal function had returned to normal following heavy steroid use. Unfortunately, my "levels" were too low; I have to remain in 4 m.g. of Prednisone for a while longer. I honestly feel better, energy-wise, while on the Prednisone. The only disappointment I have on staying on the medication is that my weight has not gone down at all.

Also recently, I met with a genetic counselor through the Virginia G. Piper Cancer Center. Initially, the counselor was a bit confused by my referral--- most of the patients she sees are cancer-related referrals. I think my case actually interested her! She spent over an hour answering my questions regarding CCM, and even made sure I had at least some basic understand of how genetic mutations occur. My counselor then gave me a kit (Gene Dx) to take to a nearby lab. I should have the test results in 6-8 weeks.

I felt it was important to go through with genetic testing so that doctors will know the specific gene responsible for my cerebral cavernous angiomas. That way, I can hopefully participate in future research or drug trials for "my type" of mutation.

When I return for my results, I will most likely take my oldest son in for testing. He is the only biological child who has no lesions on MRI; he wants to know if he has the mutation. We will most likely also have our symptomatic children tested--- just to have the information. You never know when this information may prove helpful.

The most disconcerting aspect of genetic testing is understanding that since it is an autosomal, dominant mutation, my (possible future) grandchildren each will have a 50% chance of having this disease. The genetic counselor suggested that the only way to circumvent the disease cycle is to not have children (and adopt), or to have in-vitro fertilization.

Initially, I thought of "how cool" it was that an embryo could be tested for the mutation and then implanted in the mom if the results were normal--- but the thoughts of what would happen to that embryo with a mutation seems too difficult to contemplate. Basically, you would allow the healthy embryo to live... and then let the unhealthy one die. I am all for avoiding disease and for making wise decisions, but IVF comes with serious moral considerations. I am so thankful I will not have to face this personal decision. I have already started praying for the health and safety of any future children in our family. These are sure tough issues.

In other family news, my youngest biological son's cervical and thoracic spine MRIs came back clear.  Praise the Lord! I cried many happy, thankful tears that he will not have to manage additional serious lesions. His cerebral lesons will be enough to contend with.

In other medical news, I need to go in for an EEG. My history seems to indicate that I may have experienced several partial seizures due to the lesions in my temporal lobe. Even if my EEG in "normal," my neurologist (Marisa Sosinsky, M.D.) recommended that I still go on anti-seizure medication. She said that with all the lesions in my brain, whether or not I will have a seizure is not if, but when.  That didn't sound too encouraging to me; I will be starting with a new drug called Vimpat soon after my EEG. I'm not too excited about medication, but I do understand the necessity of trying to remain seizure-free; I have too many lives depending on mommy's safe driving.

And finally... one more interesting and positive event-- vestibular therapy (Valley Physical Therapy). I have been going to therapy now twice a week for the last several weeks. I also "work out" at home or at the community pool on the days I don't go in for therapy. The vestibular therapy has significantly reduced the number of random dizzy spells I was experiencing. While my vertigo has not disappeared, it does seem that the frequency and intensity of vertigo has diminished. The ability of the brain to change and adapt is truly marvelous!

I am also doing some other "regular" physical therapy for my weak left side. This work has absolutely improved my balance and overall look out on life. I am much more confident on the stairs, and seem to be having more "good" days. I am encouraged. I feel that I am adapting to the numbness and learning to trust my body to do what it is supposed to do (even if I can't feel it). So strange, but good.

Finally, my daughter had her one month follow-up for her brain stem Cyber Knife radio surgery. She is doing well, although she is still quite fatigued. Dr. Kresl did recommend that we closely monitor my daughter's thyroid levels in case the surgery or the steroids affected her levels. We are encouraged by her recovery.

It has been a very busy, informative time for us. God-willing, the crises will settle and we can find a "new normal." God-willing.

Phoenix Cyber Knife Follow Up

Today was my 3 month post radio surgery follow up.

My MRI is unchanged, as I reported in another blog post. However, I am continuing to have a multitude of neurological symptoms--- anxiety, dizziness, vertigo, headaches, numbness, weakness, fatigue, and occasional swallowing issues. Dr. Kresl reassured me that these symptoms are normal; I can expect my symptoms to be very up and down for the first year following radio surgery. He did refer me to an neurologist to do some further testing, but did not seem alarmed at any of my symptoms. Knowing that my response to radio surgery is not unusual is very comforting! I do not need to have another MRI for 6 months.

Dr. Kresl did refer me to Valley Rehabilitation for vestibular therapy. Hopefully, I can find some improvement of the dizziness and balance issues I'm experiencing.

I also got a referral for genetic testing. I want to have this information so that I can be a possible participant in future medical treatment/drug testing. Because there are at least 3 genes responsible for the cavernous angioma mutation, it is critical to know which gene I have so that I can be "paper ready" for any future trials. This is also good information for the kids to have--- not that I want them to live in fear, but I want them to be armed with information so that they can make good decisions regarding their health. My job will be to help the kids figure out what to do with test results. I don't look forward to this particular job as a parent.

I am still waiting for ACTH Stimulation test results. This is a test to evaluate my adrenal function and help my endocrinologist determine if I can safely come off the steroids.  I am so ready to be off of Prednisone!

And finally... our daughter is doing very well after radio surgery. She has been off steroids for 4 days and has some fatigue, but has no headaches or anxiety. She will need some blood work this week to check her adrenal function (she has Hashimoto's just like momma). She's a real trooper! I sure am proud of how well Miss T. is handling such a major health issue. She has grown up considerably in just a few months. I guess difficulties do make us stronger....

MRI Update

No, this is not me in the tube... but I always like to have some photo to share!

Yesterday I had my first post-radio surgery MRI. To my surprise, I received the results within hours (thank you, Valley Radiology!).

The MRI showed no change--- which is good! No new bleeds and no edema. Scan-wise, this is the absolute best result imaginable.

So why do I feel sad? It is the reality of my situation. I need to accept a new normal, yet I'm in partial denial. My lack of physical ability does not greatly trouble me; I can accept not being able to run or be some superstar athlete. And I'm learning to not trust my left hand so much anymore (I've dropped my new phone about 8 times in the last few weeks). I have embraced the microphone feature on my cell phone (I am no longer "text" challenged). I have even started working out again to make myself stronger and more coordinated. It is just that brain injury takes so much longer to heal than I want to admit.... I don't want to have constant challenges define me.

My husband was saying just this morning that when he had ACL surgery on his knee, it took him a full year to recover. He says I'm just not being realistic to think that I would feel better in just 8 months after major brain injury. Unfortunately, I could only respond by crying. It is difficult to realize life is indeed very different, and may never be the same again.

The "favorable" MRI also told me that my cascade of symptoms may be my constant companion--- a condition to somehow learn to ignore or put on the back burner so that I can cope with daily life. It is a daunting task for someone so cognizant of bodily and emotional concerns to just learn to ignore feelings. How do I learn to ignore feelings, but at the same time be aware of symptoms that are potentially life-threatening?

I know my thoughts are not unusual for a sufferer of cavernous angioma. Most of us have not been able to find a anyone who can discuss what symptoms are "normal" or expected, and what symptoms ought to be evaluated (other than an obvious symptom like a seizure, etc.). Cavernous angioma patients experience such a plethora of symptoms that it remains difficult to separate out what is disease-related and what is not. Seriously, are there no neurologists who understand this disease? I have learned more about this disease and what to expect through Angioma Alliance and though a couple of private Facebook groups (Cavernoma Support Group and Stemmies).

I find I am in a new stage of life's journey. Oh, Lord, what are the lessons you want me to learn? What are you trying to teach my family? In retrospect, I was pretty arrogant to think I had a handle on God's sovereignty. I intellectually understood God's absolute and total control of all aspects of life. After all, I've read lots of theology books and completed countless Bible studies. But personal suffering is a different teacher. It is entirely another issue to deal with His sovereignty head-on... face-to-face.... It is then that the struggle to trust becomes an hourly battle. Will I trust Him when I can't be the mom I used to be? Will I trust Him when my symptoms interfere with my agenda?  Will I trust Him when my kids get diagnosed with a potentially devastating disease?

As a family, we studied Psalm 46 last night. Such a beautiful and encouraging Scripture--- and perfect timing, as usual. God is our refuge and strength... and I need to learn to "cease striving" (verse 10). It is a process. He is God, and I am not. I don't have to like what He chooses for me, but I do need to learn to accept His plan with maturity and grace. He is my stronghold. Pray for me and for my family.

Psalm 46 New American Standard Bible (NASB)

God the Refuge of His People.

For the choir director. A Psalm of the sons of Korah, [a]set to Alamoth. A Song.

46 God is our refuge and strength,
[b]A very present help in [c]trouble.
2 Therefore we will not fear, though the earth should change
And though the mountains slip into the heart of the [d]sea;
3 Though its waters roar and foam,
Though the mountains quake at its swelling pride. [e]Selah.

4 There is a river whose streams make glad the city of God,
The holy dwelling places of the Most High.
5 God is in the midst of her, she will not be moved;
God will help her [f]when morning dawns.
6 The [g]nations made an uproar, the kingdoms tottered;
He [h]raised His voice, the earth melted.
7 The Lord of hosts is with us;
The God of Jacob is our stronghold. Selah.

⁸ Come, behold the works of the Lord,
^[i]Who has wrought desolations in the earth.
⁹ He makes wars to cease to the end of the earth;
He breaks the bow and cuts the spear in two;
He burns the chariots with fire.
¹⁰ “^[j]Cease striving and know that I am God;
I will be exalted among the ^[k]nations, I will be exalted in the earth.”
¹¹ The Lord of hosts is with us;
The God of Jacob is our stronghold. Selah.

Emotional Lability

One minute I'm laughing... the next minute I'm crying uncontrollably. Emotional lability after stroke is more common than I knew. According to the 2010 National Stroke Associate Survey, 53% of stroke survivors experienced PBA(Pseudo Bulbar Affect).

At home, my kids just think my behavior is rather entertaining. One of my kids will crack a joke, and suddenly I'm laughing so hard I nearly wet my pants. But then sometimes the laughing turns to crying... and then I start sobbing. Horrible, guttural sobs just wrack my frame. It's hard for me to stop the tears. And I don't feel depressed; this is not about depression.

I can also cry uncontrollably with something that is only a little upsetting. At home, I usually don't embarrass myself. I can isolate myself in the bathroom and talk myself through the episode. But get me in church, and the emotional wheels just fly off. In the last few months, I have not managed to get through one service without crying. It is all rather embarrassing, but it can also be very distressing (and quite distracting of those around me). It is difficult to get your heart into worship and focus on the Lord when a flood of tears starts gushing out of your eyes. And to try to think of something else (try to get your mind distracted so that you can try and stop crying) defeats the purpose of worship. I am there to worship and attempt to get my mind off myself.

Such are the trials of a stroke survivor. So irritating.

For more information on this topic, see http://www.stroke.org/site/PageServer?pagename=pba for more information. This page also has a questionnaire so that you can evaluate your symptoms; it even allows you to print the results of your questionnaire so that you can take it in to your doctor. I'll be talking to mine soon.

Cyber Knife, number 2

My almost 18 year-old daughter completed her second Cyber Knife radiation treatment today. She will receive 5 total treatments for her brain stem cavernous angioma.

I am so proud of my girl! She was very brave--- no complaining whatsoever. The treatment is pain- free. The only difficulty she is having is sleep. Dexamethasone (Dex) really makes rest difficult.

My daughter is taking a total of 8 m.g. of Dex, along with a nausea medication (Ondansetron HCL) and another medication to help her stomach tolerate the Dex (Ranitidine). So far, so good!

We are still waiting to hear from Valley Radiology to find out when my 15 year-old son will have his spine MRI. This will be the second MRI for my son. Mr. D. was diagnosed with several brain lesions, but they are not symptomatic. He has none in the brain stem, thank the Lord! The brain lesions will just need to be monitored, unless he develops seizures or headaches. Unfortunately, upon neurological exam, my son's reflexes were "brisk." This might indicate a possible spine lesion. I do understand that the reflex exam can appear abnormal if the patient is anxious--- I so pray that anxiety is the reason his test was abnormal!

Regarding anxiety, mine is pretty elevated! I am very grateful that I have a church (Scottsdale Bible) that offers a Stephen Ministry. I am meeting with a counselor tomorrow, and am so looking forward to praying and talking with someone. Chronic illness kind of burns out your friends... (sorry guys).

Rescue Me, Rescue Her

For a long time, I could not even pray for healing. I was so overwhelmed by the trial and the emotion of all that a diagnosis of cavernous angioma entails. But when my daughter was diagnosed with the same disease, I had renewed motivation to be well. I needed to persevere. I wanted to be able to care for her and to encourage her in her walk through potential misery and ongoing trial.

My daughter starts radiation tomorrow. This will start a series of 5 sessions that will, God-willing, cauterize the lesion and prevent future bleeding. We would appreciate prayers for her, and for our family.

Psalm 31

For the director of music. A psalm of David.

1 In you, Lord, I have taken refuge;
    let me never be put to shame;
    deliver me in your righteousness.
2 Turn your ear to me,
    come quickly to my rescue;
be my rock of refuge,
    a strong fortress to save me.
3 Since you are my rock and my fortress,
    for the sake of your name lead and guide me.
4 Keep me free from the trap that is set for me,
    for you are my refuge.
5 Into your hands I commit my spirit;
    deliver me, Lord, my faithful God.

6 I hate those who cling to worthless idols;
    as for me, I trust in the Lord.
7 I will be glad and rejoice in your love,
    for you saw my affliction
    and knew the anguish of my soul.
8 You have not given me into the hands of the enemy
    but have set my feet in a spacious place.

9 Be merciful to me, Lord, for I am in distress;
    my eyes grow weak with sorrow,
    my soul and body with grief.
10 My life is consumed by anguish
    and my years by groaning;
my strength fails because of my affliction,[b]
    and my bones grow weak.
11 Because of all my enemies,
    I am the utter contempt of my neighbors
and an object of dread to my closest friends—
    those who see me on the street flee from me.
12 I am forgotten as though I were dead;
    I have become like broken pottery.
13 For I hear many whispering,
    “Terror on every side!”
They conspire against me
    and plot to take my life.

14 But I trust in you, Lord;
    I say, “You are my God.”
15 My times are in your hands;
    deliver me from the hands of my enemies,
    from those who pursue me.
16 Let your face shine on your servant;
    save me in your unfailing love.
17 Let me not be put to shame, Lord,
    for I have cried out to you;
but let the wicked be put to shame
    and be silent in the realm of the dead.
18 Let their lying lips be silenced,
    for with pride and contempt
    they speak arrogantly against the righteous.

19 How abundant are the good things
    that you have stored up for those who fear you,
that you bestow in the sight of all,
    on those who take refuge in you.
20 In the shelter of your presence you hide them
    from all human intrigues;
you keep them safe in your dwelling
    from accusing tongues.

21 Praise be to the Lord,
    for he showed me the wonders of his love
    when I was in a city under siege.
22 In my alarm I said,
    “I am cut off from your sight!”
Yet you heard my cry for mercy
    when I called to you for help.

²³ Love the Lord, all his faithful people!
    The Lord preserves those who are true to him,
    but the proud he pays back in full.
²⁴ Be strong and take heart,
    all you who hope in the Lord.

Of Anniversaries and Angiomas

Last night, my husband and I went out to dinner (thanks, Mom) to celebrate our 21st anniversary. How amazing that we haven't killed each other by now! But in the course of dinner and conversation, we inevitably talked of this lovely disease--- cavernous angioma-- and how is frustrates me to to end. I expressed my desire to find an expert in the field who could answer questions, and give me some perspective to the disease.

That's when my husband made an interesting comment that echoed in my mind all through the night. He said, "This isn't a disease to understand or manage. There's not much to do, and Dr. Willis has answered your questions. All that can be done is crisis intervention."

Crisis intervention. And I guess that's right. A doctor can give you seizure medications if needed. A doctor can track progression or regression of the disease. You can take steroids to reduce edema. A patient can opt for surgical resection or radio surgery. But really, there is not much to do but crisis intervention. There is no cure; there is nothing that can prevent the disease. For a person who likes answers---concrete answers-- this is difficult to swallow.

I have said to another friend that this disease is feels like you're waiting for the other shoe to drop. You just never know when the next wave of crisis is going to threaten you. You try to relax and trust the Lord, but your body defies you--- you're on constant alert.

Because the brain is plastic or dynamic, symptoms constantly change. One day feels like perhaps you're making some overall progress; the next day feels like the numbness has worsened. For emotion-driven people, like myself, not focusing on how you feel is very difficult. Telling yourself that you can not trust your symptoms seems so counter intuitive. How do you go on with the day, acting like nothing is wrong when in reality, you're treading water, emotionally-speaking?

The only way I can try to understand life right now is by viewing this whole dilemma through the Word. We are told to walk by faith, not by sight. We are told not to fear. We know we are never going to really understand all that we want to understand--- and that has to be okay. It has to be okay.

But this does bring me to another point of this post. If you do have cavernous angioma, it is imperative that you sign up on the international registry (angioma.patientcrossroads.org) and get genetic testing. That way, you can participate in the gathering of information and on going research to aid in the hopeful discovery of a cure or treatment for this dreaded disease.

Until medical progress is made, and definitive treatments are discovered, I (we) must remember the only true hope we have (or really ever need) is the Lord. He must be my hope, even if a cure is found. So I wait. He will give me what I need.

Psalm 130

A song of ascents.

1 Out of the depths I cry to you, Lord;
2     Lord, hear my voice.
Let your ears be attentive
    to my cry for mercy.

3 If you, Lord, kept a record of sins,
    Lord, who could stand?
4 But with you there is forgiveness,
    so that we can, with reverence, serve you.

5 I wait for the Lord, my whole being waits,
    and in his word I put my hope.
6 I wait for the Lord
    more than watchmen wait for the morning,
    more than watchmen wait for the morning.

7 Israel, put your hope in the Lord,
    for with the Lord is unfailing love
    and with him is full redemption.
8 He himself will redeem Israel
    from all their sins.