Waiting...

I'm steadily moving along with my treadmill therapy, but I'm finding that I'm reaching barriers that I can't push through. I hit a HR of 135 and after that, my symptoms cause me to reduce my speed or incline and keep my heart rate lower than 135. For a while, I had been able to push through the symptoms and push my HR to 140-145 symptom free.

I was sick for a week with a cold and it's possible that I got back out of shape and it's just taking time to get back up there. I shouldn't complain really, because I am supposed to only be able to get my heart rate in the 120's without symptoms.

I see Dr. Leddy on Monday, and it feels like 6 weeks without seeing him has brought down my morale. Maybe it was just being sick with a cold. I don't think there's much to gain by seeing him, because my condition won't improve just with seeing him. I think he has a good way of reassuring us and helping us understand what's going on and why. I always feel better when I leave his office.

I want to try to get on the treadmill today, but I have a headache threatening to become a migraine any minute and the nausea is not staying at bay today. I'm also having trouble with fatigue today. The headache hasn't been as constant lately, but the other symptoms (nausea especially) have been more prevalent.

I don't know really what any of this means, and it might not mean much, but anything different seems encouraging to me. I'm sleeping more and better too, but also having more vivid dreams that I can remember more easily.

I'll post an update after I see Dr. Leddy on Monday.

Social Security Disability, Student Loan Discharge

Social Security Disability can be a hassle and it takes a long time. I was disabled in June of 2009, I applied for SSD in November of 2009, and I was rejected immediately. The office didn't look at my reports from my neurologist or my primary care physician before they made their decision.

I applied for a hearing to appeal the decision in February 2010, and am still waiting on my hearing. I hired a lawyer and they are taking care of the hearing for me when it comes around. They tell me that it will be a slam dunk and there's no way I won't be approved, but waiting patiently is tough!

I just found out a week ago that you can get a conditional discharge on your student loans for 3 years, and it can turn into a final discharge if you are still disabled after that time period. You have to be totally disabled or earn below the poverty level. I just applied today and hope it will go through. I got a forbearance, which lets you be relieved from paying it for a few months, but a discharge, where they forgive the loan would be so helpful!

Let me know if you need help finding the information. Has anyone had success stories with SSD?

Progress... what's that?

I'm cautiously optimistic, but I think I might be making some progress. When we saw Dr. Leddy 2 weeks ago, he set my target heart rate at 123-128 for my 20 minute treadmill therapy. I have gotten to a point where I can do the 20 minutes at that heart rate symptom free. I called Dr. Leddy today to let him know about my progress. We are increasing my target heart rate to 140-145 for another 4 weeks until I have my next appointment.

I feel like I can have hope now and that maybe I really will be able to get better. I'm still going to take it one day at a time and try to keep my activity level under control. Dan and Dr. Leddy want to make sure I don't overdo it and even if I feel better, the more rest I have the better my brain can heal.

It's amazing to have you guys to have supported us through the last 18 months of this. I am so grateful to God for His constant faithfulness and love. Thank you for loving us and lifting us up. Seeing some progress after so long without any is so encouraging and so exciting! Please pray specifically that I will be able to continue to rest the way I need to so that my body can heal and I concentrate on the treadmill therapy.

Progress....

I have had 2 doctor's appointments since my last update, and both were very positive. I feel renewed with hope and a good attitude for now and am excited to move forward with my treatments.

I had 11 migraines this month, so they are not slowing. I have been struggling with the medication for my migraines. The new types of medications they gave me at my neurologist appointment seems to be working better than anything I've had so far.

Although the Treximet I had been on from the beginning helped the migraines, it was tearing up my stomach because of the Naproxen in it. The Maxalt they switched me to didn't bother my stomach, but didn't touch the migraines. Now I have been given Imatrex and Naprelan. The two medications together are basically the same as the Treximet I used to be on, but the Naprelan only releases 10% of Naproxen into the stomach.

I was also given a prescription for Sumavel DosePro, which is a needle free injection of Sumatriptan. It's basically like Imatrex, but works so fast! You can use it when a migraine comes on unexpectedly or when you wake up with one. It hurts a lot, but within 5 minutes my migraine started to go away. It's definitely something every migraine sufferer should have in their arsenal of medication.

When I see Dr. Leddy, from UB, I always feel better. He helps us understand my condition better every time we are there. He has increased my target heart rate on the treadmill for the first time! I'm so excited to see a little progress. I have been able to maintain my new target heart rate of 123-128 for 20 minutes the last 3 days!

I start on the treadmill now at a speed of 2.5 and incline 0.5. Over 3-4 minutes, I work my speed up a little at a time until I reach the 120's. I steady it out and raise and lower the speed to keep me within my target range of 123-128. I go for 20 minutes total (including the time it takes to get to my target rate). If my heart rate goes above the range and I can't bring it back down, or my symptoms get to be too much, I stop.

When my heart rate goes up, more blood is sent to my brain, but it doesn't stop when there's enough blood there. My brain gets flooded with too much blood and that's what makes me dizzy, nauseous, headache, etc. The theory is if we push the symptom threshold, slowly, that my blood flow and heart rate will begin to regulate themselves automatically again.

Please pray that I will stay healthy and be able to control my activity so that I can continue to make progress in my treatment.