Overdue

Well, I've been told that we're overdue for an update. So sorry. Things have been crazy!

B has been studying like crazy for some exams/certifications that he has to take for work. Having a wife in the hospital made it hard for him to work, much less, get in all of the studying that he needed to do for these exams. He has not once complained, but just continued to love me. Wow! What a man!

I am still having seizures. Did you read that? I said "seizure." It's been so hard for me to change the word from "episode" to "seizure." However, the doc told me that I need to get used to it because I have epilepsy and it's a fact of life.

I will try to catch y'all up on all that has happened over the last few weeks. However, I won't do it all in one post. I'll try over the next week or so to get it all on here.

As of today, I have started a new medication. I'm still on the other one, but I was at almost double the highest dose ever studied and I still had around 25 seizures over the weekend. The doc said that is unacceptable. So, he started the new med today. Apparently, the two ways to change seizure meds are:

1. Quickly: They hospitalize you and pull you off the med you are on very quickly and quickly add the new one, but there are a lot of risks, which is why you are hospitalized.

2. Slowly: You very slowly add the new med. Once you reach the dose you need, then you slowly titrate off of the old med.

The doc chose option #2. So, we're looking at about three months of med changing....

I am so far past exhausted right now. We want to rejoice the days that I don't have many seizures, but the truth is that I still feel pretty yucky even when I'm not having them. I feel like I'm stuck in a constant state of nausea, dizziness, etc. So, I'm so ready for this to be over...

Hopefully, the new meds will make a real difference.

Your prayers are all so very special to me. Thank you!!

Praises:
*Short Term Disability was finally approved
*Long Term Disability was also approved

Prayers:
*That the seizures will end and I'll start to feel better quickly
*That we can get results with the lowest dose of meds possible
*That B will pass his test on Thursday with flying colors!! He deserves so much with all the sacrifices he has made for me through this.

M Update: From Me

Well, I figured it was high time for me to actually be the one writing an update. I must start with saying how blessed we are to have such amazing prayer warriors on our team!! Wow!! You have all been so selfless and taken time out of your busy days/lives to petition the Lord on my behalf and to get me on prayer lists all over the world. It has truly humbled me.

I have felt the Lord's love through each of you. There have been many times that I've wondered if the Lord could hear me crying out to HIM, begging for healing. Soon after, I would get an e-mail or card from one of you that was clearly Him encouraging me that He does hear me. Yes, my plea was for healing at that exact moment and we haven't seen that happen completely, but you have each served as reminders to me that He can hear me, He loves me, and He has a plan.

What I'm having to negotiate in my brain right now is why the healing can't be immediate. Yet, through encouragement from y'all, my heart keeps reminding me that there is a plan that I just can't see. As B would say, I just need to be patient. I'm a planner and so I'm already thinking about tomorrow (okay, next year) and my amazing husband keeps reminding me that tomorrow has enough worries of its own (Matt. 6:34). Remember, this is the man that when diagnosed with cancer, the first words out of his mouth were, "cool, this means I get to be a cancer survivor." Wow!! So, having him on my team is such an encouragement. I am by no means a patient person and so this has been a challenge for me. Obviously, two years of feeling like crud, with up to 25 of these episodes (I'm still learning to call them seizures) each day, is hard to endure. Even harder was getting a diagnosis last week, going three days without any "episodes" and then it all starting back up with more intensity.

I was reshospitalized on Tuesday so that the doc could monitor me more closely and make sure we had the right dose of anti-seizure medication. I was hooked back up to the EEG (it's a lovely look, by the way, having wires coming from every direction on your head), and they started increasing my meds. I had one the first night when I got there and two the next day. So, each time the doc came in to see me, he kept increasing my dose. I told him that what stinks about having a pharma rep as a patient is that I actually read the package insert and all the studies they've done. So, I know the dose he has me on is much higher than anything that's ever been studied and so we were really pressing him to make sure we were making the right decisions with all of the increases. He said that he feels it is safe to take it this high (though I may experience some more intense side effects) b/c "the goal is to never have another seizure."

So, I am experiencing some more side effects than I might otherwise experience. Exhaustion, dizziness, nausea, and hand tremors are the big ones I'm experiencing now. We are praying they subside quickly, too. I came back home yesterday and continue to be blessed by all of you with your e-mails, cards, meals, etc. A big prayer request that I have right now is for my sanity as I am not allowed to drive until I have been seizure-free for six months. Likewise, I'm not allowed to shower, cook, etc., by myself. So, your prayers and meals continue to be such a blessing. Several of you have asked that we resend the link our Sunday School class established for those that want to sign up for meals: http://scking.net/abf/index.php/Foxes
It is so humbling to me that you would want to serve us in this way, as it is so frustrating to me to not be able to cook for my sweet husband who has amazed me with his love and servant's heart for me during this time. I would be remiss if I didn't also mention how wonderful my Mom has been through this, as well. She and B have both sacrificed so much to be with me at the hospital, doctor's appts., etc. Thank you, Lord!!

Something else I believe the Lord has used to encourage me was (here comes cheesy) the final performance on American Idol Wednesday night...Shout to the Lord

My Jesus, My Savior
Lord there is none like You
All of my days
I want to praise
The wonders of Your mighty love

My Comfort, My Shelter
Tower of refuge and strength
Let every breath
And all that I am
Never cease to worship You

Shout to the Lord
All the earth Let us sing
Power and majesty
Praise to the King
Mountains bow down
And the seas will roar
At the sound of Your Name

I sing for joy
At the work of Your hands
Forever I'll love You
Forever I'll stand
Nothing compares
To the promise I have in You

The last seizure that I had was Wednesday night a few minutes before this song started. I can't help but focus on the words of this song and the Lord using it to encourage me that HE is in control. If "mountains bow down and the seas will roar at the sound of His name," then seizures have nothing on my God!!! It is hard for me to stand up due to the POTS and the side effects of the medication, but "forever I'll stand" because "nothing compares to the promise I have in HIM!!"

Thank you all for your love, encouragement, meals, & most importantly, prayers!

because of HIM,

Me

Sweet Friends

Hi everyone, M was released from the hospital yesterday and is now back home. I took them food last night so I got to visit with them a little bit. She is doing much better, but is still very weak. She also found that she is not allowed to drive for the next 6 months because of the seizures. Here is where we can help out... we need to be M's taxi service for a while. She has a hard time asking for help, so if you know you are going to the store and will be in the area, try to email or call a day in advance to see if she needs a ride. Please keep them on your prayer list. They said they can feel them. Hope everyone has a wonderful weekend.
Blessings, a friend

Back in the Hospital

How many times a day do we receive an answer to our questions?? So often that we take that simple act of "question and answer" for granted.
Through this journey I have learned how difficult answers are to come by and how precious solutions can be.
We have returned to Medical City...M's seizures have increased in number since she left the hospital and they've increased in intensity & length. She has also developed wrap around migraines!!
Likewise, her heart rate is elevated and the auras, nausea, and dizziness are now constant.
Please continue to pray for answers, for healing, and especially for M's strength. I have watched her pain increase and her body and spirit be ravaged by this disease. The few days without seizures and I began to see "our M" again. Now once again she is totally drained and the simple act of standing is again an effort.
Perhaps the POTS or the Diabetes Insipidus is interfering with the seizure meds or perhaps...???
So many questions and no concrete answers, as of yet.
Please pray that God can be glorified through this process and all will come to see His miracles, His grace, and His power.
All our love and appreciation to you,
M's Mom, M and B

B's Update

Thank you ALL! What an amazing network we have in our faithful Lord and Savior. The many prayers that have been lifted up for M. The e-mail support. The cards. What an encouragement for M and most importantly a testimony of your faithfulness to support & love one another with Christ's unfailing love. I cannot begin to tell you what it means for us to feel God's warmth and love coming from so many around us.

Most of you now know that M is back home from the hospital after spending this last week at Medical City. After 28 hrs in the ER and then several days more in the hospital, we are confident that we are nearing the final chapter of this particular book in life. While the road has been very trying for M, we are amazed by God's provision of strength during such difficult times. While in the hospital, M was diagnosed with Left Temporal Lobe Seizures.

It would appear that the seizures could be the root source of M's illness for these last two years. As many know, M first became ill about two years ago and was eventually diagnosed this past September with an orphan syndrome (no particular cause or cure), called POTS (postural orthostatic tachycardia syndrome). Then, in mid March, while in the Hospital, she was diagnosed with diabetes insipidus (a form of water diabetes). Finally, while at Medical City, we received our present diagnosis. Now the new diagnosis is not to say the previous two diagnoses were incorrect. Rather, we feel that we found a particular symptom, then another symptom, and finally, a root cause. The three physicians that are working together (Cardiologist, Endocrinologist, and now a Neurologist) seem fairly confident that once we address the seizures, the other issues should also start to resolve.

So...please continue to pray for M and her healing. While she has started an anti-seizure medicine and went three days without any episodes (seizures) and felt much better, since coming home, she has started to have them again. Yesterday, she had five. This is less than 25, but it is still a true test of patience and understanding. It will take awhile for the dosage and the proper medicine to fully resolve the seizures, but as M has said, after two years, you just want things to be better!

Many of you have asked about how you can help. Honestly, first, continue to pray on our behalf that M would continue to trust in God's complete and perfect plan knowing that the testing would lead to endurance and endurance to a greater faith. Pray also that her medicine would work effectively and that we would come to the correct dosage soon. Pray that our marriage would continue to be strengthened and that although it is close to five years of marriage that we would continue to grow deeper in one another, as the two become one.

Second, many have desired to serve and bless us with meals. Thank You! You have been such a blessing! To make things easier for communication of meals our previous Sunday School class has set up a website and calendar for meals and we encourage those that are willing and wanting to do a meal to go to the website. Again, y'all have been such a blessing at this time. The website is: http://scking.net/abf/index.php/Foxes and you can sign up in available spots. At this time we have opted to do signups every other day.

Finally, THANK YOU again! We appreciate your support, love, guidance, and prayers. You have truly been uplifting in ALL WAYS. I know that we are near the end of this journey and look forward to sending out a future email of complete healing and thanksgiving!

Do not be anxious...but in ALL WAYS present your request before the Lord...
Philippians 4:6

B

Seizures

We are so blessed to have you as a friend and faithful prayer warrior!! M, B and I have truly felt your love during this frustrating journey. How do people without dear friends survive??
While we are all exhausted from life in the hospital, we are also blessed in that we are finally receiving answers....The Neurologist has determined that M's episodes are really "temporal lobe seizures". As no family history or trauma exists, they deduce it is from an unknown cause. The diagnosis while initially scary, is welcome. We now have a starting point to begin treatment and healing. They have administered the anti-seizure medication and it is working.
The plan is to experiment with the dose, reach a therapeutic level that stops the seizures and then tackle the POTS and the diabetes insipidius. The good Aggie Neurologist believes we may see some spontaneous improvement in the latter two by successfully controlling the seizures. Please continue to pray as we still have such a long way to go. The medication has not relieved the nausea and dizziness, as of yet, and M will need assistance for some time.
Prayerfully, her health will improve and she can eventually return to work and the "normal' life she and B so richly deserve.
We are blessed to be surrounded by supportive family and friends like you!
Thank you,
Love,
M's Mom, M and B