Hopefully everyone is enjoying summer. It seems like everyone is running around like crazy since school got out. At least we've had great weather. There have been a lot of celebrations like graduations, dance recitals, soccer tournaments and camps to keep us all busy.
Today is Day 60 since I've started the crazy cycle of high-dose steroids. As for now I'm on a maintenance dose of 30mg per day for at least another week or so, and will gradually taper down. Unfortunately, I haven't found it to be the wonder drug I once hoped it would be, yet I am optimistic that it can still work because the doctors in Philadelphia said that it often takes 1.5 to 2 months before you see results when there is a lot of swelling and fluid near the optic nerve.
On the other hand, I did have a miraculous(?) profound change in my vision back on May 23rd. It lasted for three days. Basically, I could see almost perfectly, as if a straight line was drawn through my seeing eye and my whole left side had the ability to see color, and everything was much more defined and clear like it had been 2.5 years ago. I could even see the fine hairs on my arms. The right side of vision remained blurry with cloudy, muted color. I believe this change was a gift from my mother. The story behind this is that I was purchasing a cross for my Pandora bracelet on May 22nd. As I purchased this, I smelled the scent of my mother. Periodically through the rest of the day, the scent came to me, yet nobody else could smell it. When I went to bed that night, the scent got stronger so I decided to ask my mom for her help in healing and to stay close to me through this medical dilemma. On awakening, again I had the smell and I was able to see as described above. I called my sister and she said "Oh shut up, no way. Today is mom's 13th anniversary of her passing." I on the other hand was unaware of that being the day because my calendar had been so filled with the dosage and recordings of my medical information that I didn't even see the date on the calendar, let alone remember it.
I saw the doctor two days later, while my vision was still good, and I was able to see better on the eye chart by two lines. He could not explain this and he could see no change visibly or through photos. That was Day 30 of this drug. On day four, as profoundly as the change occurred, it went away. I woke up and the window of vision was gone. Several weeks later, the doctor decided the drug was not effective and had me taken rapidly down over a week from 40mg to 10mg, and my vision became worse than ever. The other reason he decided to take me off this medication was because my kidney was stressed. I gained about 10 lbs in fluid and my kidneys could not accommodate the extra water.
I did leave multiple messages for the doctors out in Philly and they told me the reason for the dramatic change was because I tapered too quickly, and to taper over several weeks instead of over several days, so now I'm back up to 30mg.
Periodically, I do notice that my vision improves, especially in the late afternoon/evening, and they think this is due to the drugs peaking, so I'm playing around with when I take the pill.
After that miraculous change, I was looking for answers as to why this could have happened and went to an intuitive/healer, a hands-on healer, and additionally was blessed over the phone by Peter Rookey, who had been blind himself. He became a priest after praying and got the gift of sight, and then he gained the ability to heal others. He has healed countless blind people. I plan to go see him personally for a blessing but he is 92-years-old and his schedule is quite busy. He's about 1.5 hours south of me in Olympia Fields.
I feel that my life is changing for the better as countless positive events keep occurring. Steve got a job, all my other medical issues (brain, kidney, spine, skin) are stable, I traveled to Atlanta, and now I'm preparing to take another well-needed trip, again without my husband and children. My brother's and sister's families had planned a trip to Maui and Oahu 3-4 months ago after my brother Jeff was told his life could be drastically shortened due to an inoperable brain lesion that appeared to be growing rapidly. After much discussion, my brother and sister decided to take a family-trip-of-a-lifetime. My family was invited but Steve was unemployed at the time, so we declined. My sister-in-law arranged to have their marital vows renewed and a photographer on hand in case this was their last family trip. My brother and sister continued to call me weekly, begging me to join them, yet financially I felt we were not in a place to do so. But as time grew closer, and my vision has gone through such dramatic change, Steve decided to use his airline miles (which we've had for 15 years through American but had been unable to use) and I am now booked to join them for 8 days of fun and sun in Maui. Yippee Skippee!
In the meantime, Jeff had waited 6-8 weeks to see a world-renown neurosurgeon. The wait was very difficult because he was symptomatic (dizzy, headache, nausea). He got good and bad news from the neurosurgeon: rather than a brain lesion, it was scar tissue. On the flip side, the reason for feeling ill is that he has another brain tumor that he'll have to deal with, but this one is in a better location. So instead of making this the last family trip, we are going to celebrate our first brother/sister trip together.
Whoever said 50 could be bad? So far this year has brought me a lot of happiness.
Steve and Tyler recently traveled for 5 days to Kansas City for a regional soccer tournament. I thought it was nice to give back to Steve after what he did for me. Yet, the trip turned out a bit more disastrous than planned. After 2 minutes of game time, Tyler collided with another boy and his leg kept giving out, so they would not let him resume play for the rest of the tournament. Upon returning home and having an MRI, we found he has a complete torn ACL. He will start therapy today to strengthen his leg, and then we need to decide if he'll have surgery in a month or play high school soccer with a brace. If he plays, there's a 5-10% chance that he could do more damage, so we may opt for surgery in a month instead. Poor Tyler. Last year the elbow, this year the ACL.
Alyssa and I stayed home and organized the house. She's been to VBS camp and a 1-week theater camp. As for me, I've been busy preparing for my trip and catching up with old college friends, like Jeryl, Patti, DiTy, Mindy (my old college roommate who I've not talked with for 20 years; it was like no time had passed) doing lunch and shopping.
Maui, here I come! Keep your prayers coming for my return of vision, as I continue to say my own daily. And throw in an extra prayer for Steve that he survives my travels and being home alone with the kids. Can't wait to catch up after I return on July 4th from my trip.
