still painful

My feet continue to be painful. Pain level at 8 when I wake, 4-7 through the day, worse after I have walked a lot during the day. I continue my outdoor walks, though less frequently now, maybe 2-3 per week. I will talk to my doctor about increasing my Oxycodone dose during my next appointment.

I met with my boss and will return to work in a couple weeks. It will be so good to get back to work again. I miss being in the office and productive in that way.

I continue to be seizure-free. My last seizure was March 12, 2-1/2 weeks ago. What freedom I feel.

I was contacted by a woman, Kim, who read my blog. This is the first person I have been in contact with that also has LV. She has been in contact with 2 other women as well. I don't feel like such an isolated case anymore. Her experience has been similar to mine in many respects, though hers progressed much more rapidly. She also has had more than 70 ulcers at times. I sent Kim's current treatment to my dermatologist for her feedback.

Dr. Fiol appointment

I saw my neurologist today and he told me I should stop wearing my helmet, that it just reinforces in my mind that I have a seizure disorder. So after I took it off and carried out of the clinic into the warm sunshine, I felt freed of what has become for me the symbol of my condition and my frustration and anger. This is a significant step in my improvement and cause for celebration.

He also said that I can't drive for the 6 months following my last seizure. I do not look forward to a summer without that luxury.

I have been seizure free since last Friday. I ended up with a total of 3 seizures last week, down from 6 the prior week.

My pain continues to stay in the 4-6 range. The worst pain is on the front of the balls of both feet, nearest my big toes. Near the end of the day when the pain is worst, I take off my shoes and elevate my feet.

Last Tuesday I saw Dr. Schakel, who has been treating my LV pain since last fall. With the pain management plan we developed over time, I can see my regular doctor each month for an assessment and get my narcotics prescriptions. I graduated from the Pain and Palliative Care Clinic, another cause for jubilation!

recent progress

My pain is still under fair control. Though higher when I wake, recent daily pain levels are in the 4-6 range. Maintaining my active lifestyle is possible, though I need to take off my shoes and put my feet up towards the end of the day. During the day, I take a total of 5-10 mg of Oxycodone for breakthrough pain.

I am now measuring my seizures in number per week instead of per day. That is great news! I had 6 last week and only 2 so far this week, with a day and a half left. I see my neurologist, Dr. Fiol, next week to discuss my progress and get his feedback on when I can drive again.

90 days have passed since I last worked and I am still working through the long term disability insurance process. Now my application is in medical review. Next week I should hear whether or not it's approved.

seizure news

I had a seizure last Friday, which was my only seizure since last Tuesday. That's one seizure in 6 days! I can finally see light at the end of this tunnel. I will make an appointment with Dr. Fiol, my neurologist, and talk about my progress and discuss how long I have to wait after my last seizure before I can responsibly drive again. I am excited about the prospect of driving and working again.

current pain level and seizure news

My pain level since seeing Dr. Schakel last has been 3-4 and I can walk around, go shopping, and do my 1 hour daily walk. We are now achieving the goals of my pain management plan. Thank you Dr. Schakel. Also, I am still currently ulcer free. I do wake up with pain levels between 6-8, so I take my morning doses and wait a half hour before getting out of bed.

Lately my seizures have been less frequent, at 2-3 daily in number, and have been described to me as being much less violent and mostly it looks like I am peacefully resting. I am still confused and scared when I come to. The people around me that I am with are more relaxed and skilled in what to do and how to manage my seizure and also the onlookers. My youngest Lucy, has been extremely helpful, agreeing to go with me places knowing she will be the one who needs to manage all aspects of my seizure if they happen. She takes it all in stride. I love and appreciate her dearly every day.

Yesterday was the first seizure free day I have had since December 9. This is certainly cause for celebrating!!! I did some looking back in my notes and calculated I have had between 400 and 500 seizures in the previous 84 days. That's a lot. Along the way I have met others that have suffered through and/or eliminated their seizures. That helps me feel not as isolated.

My current med list is:

aspirin 325 mg daily
Cymbalta 60 mg daily
Danazol 200 mg daily
Persantine 75 mg three times daily
Lovenox 60 mg/.6 ml subcutaneous injection twice daily
Folic Acid 400 mcg daily
Neurontin 1200 mg three times daily
Remeron 30 mg daily
Nifedipine SR 30 mg daily
Pentoxifylline 400 mg three times daily
Zantac 150 mg twice daily
Trazadone 150 mg daily
Vitamin B-12 1000 mcg daily
Vitaminb B-6 100 mg daily
MS Contin 30 mg three time daily
Oxycodone 5-10 mg as needed
Well butrin SR 50 mg three times daily