Whoops, did I say kidney? That shows how much it's on my mind. We just passed Dec. 21st, the first day of winter and the shortest and darkest day of the year, but that means the days ahead are going to be getting longer and brighter. So, welcome winter, and Merry Christmas and Happy New Year to all, as this will not only be my blog but my Christmas card as well.
Mayo Clinic has come and gone and it appears that we have found that I have all the signs of NSF, including a significant level of gadolinium contrast remaining in my tissues. I have not had an MRI with contrast in over 2.5 years so this is really stuck in my tissues, and there's absolutely no reason that it should have happened. Everyone at U of C is treating me as if I have NSF, although they may do one more biopsy just to prove it.
Upon returning from Mayo Clinic, I developed a rather unusual rash. It's my chief complaint and it has traveled everywhere, starting on my chest, and it's still on my arms, my face, and the top of my feet. It is horribly painful and blistering, and possibly viral (but not contagious), yet none of the four doctors I've seen have come up with a diagnosis, which is rather frustrating. In addition to the rash came 16 lbs of weight loss, more fatigue, decreased appetite, joint pain, etc. I am just one miserable soul. I sleep between 11-13 hours per night and can't get myself up until the afternoon. Between that and my face breaking out with the rash, I feel like a teenager again.
Thankfully, I do get remarkable vision every now and then, between the shades of gray. At a party last weekend I saw people's glasses and their sweaters. If I looked at someone directly, I couldn't see their faces, but I could tell who was who. Last night I watched a movie on my iPad because the shadows were so good that I could see people moving on the screen. I didn't want to go to bed while the vision was good; I might as well take advantage of those moments. I still get the eye injections every 4-6 weeks despite no change to that area (no better, no worse).
The majority of my life lately has been focusing on doctors about my combination of issues. The GI doctor feels that due to my severe pancreatic issues, I absorb nothing when I eat, so he put me on an enzyme to help with absorption. Since then, I've been feeling a little more energy. The kidney doctor says my kidney is the problem, and the skin issues, itching, fatigue, achy joints, lack of focus, and lack of appetite are all very much related. He says once I start dialysis, after about a month I'll feel better. In the meantime, he also found that an acid base level in my blood is completely off target, so he put me on a medication that may relieve my symptoms and buy me a couple months while I look for a transplant donor. My internist wants to get at the primary problem of how to fix the joint pain. She recommends getting steroid injections in my hand and wrist joints to relieve the pain and stiffness. There's also an area in my neck where she recommends I get the injection, but I don't feel comfortable doing that one. I also went off Ritalin because that can sometimes react with other drugs and cause skin rashes and weird sensations.
I met with everyone in terms of the transplant and I'm waiting to decide when and where to do dialysis. Is it going to be done as a nightly routine in my home (peritoneal dialysis via the abdomen), or should I get hemodialysis, which is three days per week for four hours at a clinic? The main difference is that your eating and drinking is more compromised with hemodialysis because all fluids are retained until you go back to the clinic. With peritoneal, it's flushed nightly, but I need to be home every night by 10pm. The best option sounds like the kidney transplant, but it's not easy finding a donor. The doctors will tell me at the next meeting everything about what my body can accept in terms of an organ.
Regarding my balance issues, one of the two tumors in my cerebellum might have gotten larger, but my doctor said we shouldn't operate on it because it may not resolve the problem. He thinks it might be an ear problem and suggests I visit an ENT.
For the holidays, the kids got out of school on the 19th and we started off with a birthday celebration for me at my neighbor Suzanne's house. Per our usual birthday routine, the girls will celebrate my birthday again over dinner on Dec. 29. As for the family, we plan to go to the usual Christmas Eve and Christmas Day parties with my cousins and aunts (about 30 people). I truly wish my brother and sister lived closer so we could get together for the holidays. During the break, Tyler will have his girlfriend Candice out for a week to show her the sights of Chicagoland, tour the lights downtown, ski, etc. He will also be getting his workup done over this Christmas break. Alyssa is just enjoying the spirit of the season and already hanging with her friends and seeing movies. I've seen her about an hour since school's gotten out; she's a little social butterfly. I took her to see Annie (the musical) downtown as a surprise for her birthday and she loved it, so I feel like I'm back on the "good mom" list again. We also did some baking and wrapping together.
I do have to say, our house is rather festive looking. The tree is up and lit this year and we get many compliments on it. There's even a train underneath with real smoke, and all of the extra decorations around the house are up and out of their boxes, which hasn't happened in years. My friends keep asking if we're planning a party, because it looks like it, but we're not. My elves and I have been busy, too - all of my gifts are already bought and wrapped and under the tree.
So sorry I'm unable to do Christmas cards this year. I think I'll go on the every other year plan. I do love receiving cards so please keep sending me yours. I will add a picture to this blog site as soon as I can get my children to stop moving for one minute to take their photo by the tree or something.
Suzanne again wins the Doctor Driver Award for the month. She peaked two weeks ago with 21 hours in a week. This week it was 16 hours, and that's more of an average week. I'm really lucky for the help I have from all my friends and Steve. I want to thank Darlene, Mindy, Barb, Angela, and Steve for all your help driving to doctor appointments. To Delynn, a special thank you for driving Alyssa to her needed destinations - tap, school, art club, etc. You truly are a great friend. I'm also so happy to have seen Sheila and rejoined with Cathy from high school over Thanksgiving. I really miss my college friends and I'd love to see you soon as well. Time flies so quickly, and as we all know, unless you put a date on the calendar, the opportunities will fly by.
The perfect time to get together will be between Christmas and New Years, while Steve, Tyler, and Alyssa are in Michigan at my in-laws without me. Like the movie, I'll be "home alone" for four days. Fortunately, my "I've fallen and I can't get up" machine arrived this week, plus I'll have my dog Chelsea to keep me company, but I'd love some visits with friends if you are free.
Thanks as always for all of your thoughts, prayers, and help. Whether it's the smallest of favors, a phone call or a ride across town, somehow everyone pulls through for me. I don't know what I'd do without my friends. I can't express how lucky I am to have all of you angels in my life. Santa is surely watching and hopefully you'll get everything you want for Christmas.
Hoping that you all had a wonderful Thanksgiving and that you are having a safe, merry and healthy Christmas, and your 2015 will be happy and prosperous.
Monday, December 22, 2014
Thursday, October 9, 2014
Looking forward (with clearer eyes) to an answer at Mayo
A lot of things have developed recently, some for the good and some for the bad. My eye has had the most remarkable change, so why don't we start with the good.
Since my last blog, I started having better days with longer stretches of vision. At the end of August, I was at a pool across the street with Alyssa and the most remarkable thing happened; all of a sudden I regained my eyesight! I was in shock. It was not perfect but it was a huge improvement for me. I had not seen Alyssa's face in nearly two years and all of a sudden, there it was, looking right at me. I was speechless and so excited and I started eyeing everything so closely. I'd not seen anything like this in so long so I had to call the doctor. Like any sighted person, I grabbed my bag and towel, opened the gate, and walked toward home. Alyssa thought she had to hold on to me but I could really do it. Sure enough, I was able to make it all the way home and called the doctor, and they were as amazed and excited as I was.
I went in the following week and had photos and another treatment done. They were very impressed with what they were seeing. The fluid levels behind my eye had dramatically dissipated, and the vascularity of the tumors and vascular branches to the optic nerve had actually lessened and appear to have gotten smaller. The tumor growth has stabilized and I may not require much more treatment. We'll watch it and if it starts up again, we'll do intermittent treatments.
Unfortunately, I've had a few complications with some intermittent vision changes that are common to people who have had no vision for several years. It is a condition that does not come from your eyes; it is triggered from your brain due to the lack of sight. The brain feels it needs to send signals, so it sends random colors and images. They say these will come and go. It probably occurred to me due to my recent dramatic change in vision. I say my prayers every day that they will go away fast.
Regarding my help from the State, I continue to get assistance. At this time, I decided not to go in as an inpatient for training, which is weeks long and not specific to my needs, so I'm doing more training at home instead. My biggest problem is using the cane, so I need to find out how I can get more training on that here or if my costs will be reimbursed if I hired someone.
I am presently taking my third online course through Hadley School for the Blind, and at age 52, I'm finally learning keyboarding. It's actually kind of fun. I also got a really cool device from the State, which is a UPC code reader that scans all the items in my home that have a UPC label and will tell me what is in the box, can, etc., so I can finally "see" what kind of soup or crackers or frozen food I'm eating, as well as the calories, preparation, recipe ideas, etc. It reads to me everything I wanted to know and then some. Eventually it'll read prescription bottles, which is a great idea because every bottle feels the same.
My kidney continues to be my leading problem. As a matter of fact, I was placed on the kidney transplant list yesterday for the state of IL, where the waiting time for a donor is 4-6 years. I'm considering registering as well for the state of WI, because at the first of many patient educational meetings yesterday, we were told we may do better if we also apply in bordering states.
To avoid waiting, they recommend having someone be a live donor (a good match for me and willing to donate). They also recommend having a "swap" donor (someone who is very highly interested in donating, even if it's not for me), which allows two donors and two recipients to swap kidneys for a better match. Timing is key. If a fresh organ is donated to me and it's out of the body for 20 minutes or less, the rate of viability for that organ is 15-20 years. If it's out for longer but still warm, it's 10-15 years. For standard donations it's generally 5-10 or 5-15 years. For non-standard donations (drunk drivers, etc.), it's under 5 years. I have the option of declining a less desirable kidney but then I'll have to wait another 4-6 years for my next chance. People aged 55 and up are most often given the non-standard kidneys because their odds of living longer are smaller.
If my kidney function drops below 15% (right now I'm between 15-19%), then I'll need to go on dialysis if a kidney donor has not been found. We've learned my veins are too small for dialysis, so I'll need a graft made in order to do it. I'll only qualify for hemodialysis, which is done in a dialysis center 3 days per week, 4-6 hours at a time. With dialysis, if my kidney function gets worse, toxins build up, causing more fatigue, which makes the odds of going through surgery even worse. I also have to worry about my kidney tumor growing over time. So, I'd much rather have a kidney transplant than dialysis. It's a lot easier said than done, though, unless someone jumps in to donate. The process is free for anyone interested in donation, and you can even be out of state. I have all the resources you need. Just ask.
In the interim, I plan to go the Mayo Clinic this Sunday to finally determine the cause of my long-lasting problems with my skin, two prior blood clots, worsening kidney condition, achiness of bones and joints, and the relationship to the MRI contrast dye. Is it NSF? If it is, getting a transplant would definitely improve many or all of these issues. If it's not NSF, is it something that can be treated?
Summer ended up being fun and all too short. My visit with my family and friends was of course wonderful yet too brief. Tyler is back at college again and loving every minute, and appears very happy, which makes me very happy. Alyssa is also very happy and enjoying 6th grade. She has straight As with one B. She's still playing soccer and she's in an art club, tap, and Girl Scouts. She's looking forward to Halloween and her birthday later this month, when she'll turn 12. Steve is going to the Mayo Clinic with me. He works and walks the dog and is still working out. Suzanne has spent some 12-hour days with me downtown at doctors over the last few weeks - just a crazy, ridiculous amount of time, and I so appreciate her help. She is going to give me cooking lessons one day per week. I have no trips planned at the moment but I wish I did.
Have a Happy Halloween and hopefully I'll have good news to report shortly.
Since my last blog, I started having better days with longer stretches of vision. At the end of August, I was at a pool across the street with Alyssa and the most remarkable thing happened; all of a sudden I regained my eyesight! I was in shock. It was not perfect but it was a huge improvement for me. I had not seen Alyssa's face in nearly two years and all of a sudden, there it was, looking right at me. I was speechless and so excited and I started eyeing everything so closely. I'd not seen anything like this in so long so I had to call the doctor. Like any sighted person, I grabbed my bag and towel, opened the gate, and walked toward home. Alyssa thought she had to hold on to me but I could really do it. Sure enough, I was able to make it all the way home and called the doctor, and they were as amazed and excited as I was.
I went in the following week and had photos and another treatment done. They were very impressed with what they were seeing. The fluid levels behind my eye had dramatically dissipated, and the vascularity of the tumors and vascular branches to the optic nerve had actually lessened and appear to have gotten smaller. The tumor growth has stabilized and I may not require much more treatment. We'll watch it and if it starts up again, we'll do intermittent treatments.
Unfortunately, I've had a few complications with some intermittent vision changes that are common to people who have had no vision for several years. It is a condition that does not come from your eyes; it is triggered from your brain due to the lack of sight. The brain feels it needs to send signals, so it sends random colors and images. They say these will come and go. It probably occurred to me due to my recent dramatic change in vision. I say my prayers every day that they will go away fast.
Regarding my help from the State, I continue to get assistance. At this time, I decided not to go in as an inpatient for training, which is weeks long and not specific to my needs, so I'm doing more training at home instead. My biggest problem is using the cane, so I need to find out how I can get more training on that here or if my costs will be reimbursed if I hired someone.
I am presently taking my third online course through Hadley School for the Blind, and at age 52, I'm finally learning keyboarding. It's actually kind of fun. I also got a really cool device from the State, which is a UPC code reader that scans all the items in my home that have a UPC label and will tell me what is in the box, can, etc., so I can finally "see" what kind of soup or crackers or frozen food I'm eating, as well as the calories, preparation, recipe ideas, etc. It reads to me everything I wanted to know and then some. Eventually it'll read prescription bottles, which is a great idea because every bottle feels the same.
My kidney continues to be my leading problem. As a matter of fact, I was placed on the kidney transplant list yesterday for the state of IL, where the waiting time for a donor is 4-6 years. I'm considering registering as well for the state of WI, because at the first of many patient educational meetings yesterday, we were told we may do better if we also apply in bordering states.
To avoid waiting, they recommend having someone be a live donor (a good match for me and willing to donate). They also recommend having a "swap" donor (someone who is very highly interested in donating, even if it's not for me), which allows two donors and two recipients to swap kidneys for a better match. Timing is key. If a fresh organ is donated to me and it's out of the body for 20 minutes or less, the rate of viability for that organ is 15-20 years. If it's out for longer but still warm, it's 10-15 years. For standard donations it's generally 5-10 or 5-15 years. For non-standard donations (drunk drivers, etc.), it's under 5 years. I have the option of declining a less desirable kidney but then I'll have to wait another 4-6 years for my next chance. People aged 55 and up are most often given the non-standard kidneys because their odds of living longer are smaller.
If my kidney function drops below 15% (right now I'm between 15-19%), then I'll need to go on dialysis if a kidney donor has not been found. We've learned my veins are too small for dialysis, so I'll need a graft made in order to do it. I'll only qualify for hemodialysis, which is done in a dialysis center 3 days per week, 4-6 hours at a time. With dialysis, if my kidney function gets worse, toxins build up, causing more fatigue, which makes the odds of going through surgery even worse. I also have to worry about my kidney tumor growing over time. So, I'd much rather have a kidney transplant than dialysis. It's a lot easier said than done, though, unless someone jumps in to donate. The process is free for anyone interested in donation, and you can even be out of state. I have all the resources you need. Just ask.
In the interim, I plan to go the Mayo Clinic this Sunday to finally determine the cause of my long-lasting problems with my skin, two prior blood clots, worsening kidney condition, achiness of bones and joints, and the relationship to the MRI contrast dye. Is it NSF? If it is, getting a transplant would definitely improve many or all of these issues. If it's not NSF, is it something that can be treated?
Summer ended up being fun and all too short. My visit with my family and friends was of course wonderful yet too brief. Tyler is back at college again and loving every minute, and appears very happy, which makes me very happy. Alyssa is also very happy and enjoying 6th grade. She has straight As with one B. She's still playing soccer and she's in an art club, tap, and Girl Scouts. She's looking forward to Halloween and her birthday later this month, when she'll turn 12. Steve is going to the Mayo Clinic with me. He works and walks the dog and is still working out. Suzanne has spent some 12-hour days with me downtown at doctors over the last few weeks - just a crazy, ridiculous amount of time, and I so appreciate her help. She is going to give me cooking lessons one day per week. I have no trips planned at the moment but I wish I did.
Have a Happy Halloween and hopefully I'll have good news to report shortly.
Tuesday, July 29, 2014
How quickly my favorite time of the year seems to fly
I can't believe that in a few weeks the kids will be going back to school. As for our summer, we enjoyed our trip to Ft. Lauderdale with the Kennedy/Luppowitz family. Everyone got along great and I found a new favorite drink: the Moscow Mule, which is a combination of vodka and ginger beer, and it is quite refreshing.
Prior to the trip, I had quite a scare. I was having shortness of breath, extreme fatigue, major swelling of my legs, and 8lbs of fluid retention gained in several days. It was very scary as it happened so quickly. Before Florida, I had lab work done but never heard from my physician before I left for the trip, so I assumed everything was okay. Yet, my cell phone rang as we were waiting for our connection from Atlanta to Florida, with my doctor reporting how bad the lab work really was and how critical it was that I get back on a plane and go home. I said I didn't feel that bad any longer and I felt comfortable to go on with the trip, but I would seek medical attention if anything changed. He actually called me twice during the trip just to make sure I was okay, which was so sweet. I guess I really had him worried, and then he had me worry.
I wasn't sure until I got home what all was going on because he didn't really discuss it with me until then. Thankfully so, as I probably would have just been more focused on my health than I needed to be. I met with him that Friday, at which point he told me my kidney function several months ago was at 40%, but it was now at 15%, which is a sign for starting dialysis and looking for a transplant. I basically FREAKED OUT. I said, "Fifteen percent?? Is that with one kidney?" He said "No, that's counting both your kidneys." That is why he was so worried during the trip, because I have a lot of toxins in the body and it has to work very hard to go on, and that is why I get so fatigued.
Our goal now is to hopefully get me back to 20-30% so I can buy some time and look for a donor in the process. Over the course of June to the present, my labs have been at the 20% or 15% mark consistently, which means I'm closer to needing a donor now. He worries that if I don't have something arranged, the next time I have a rise in my numbers, it may not go down again and I may be put on dialysis permanently until a donor becomes available. He believes that is a much harder course to take because dialysis is very hard on the system, especially with all of my other medical problems.
So, I am asking you, your friends, your families, if anyone knows of anyone interested in being an organ donor, who happens to have blood type O+ and is healthy (no diabetes, high blood pressure, cancer, etc.), and is very serious about this. Please call me. A workup will be done prior to the final decision, and all medical fees prior to and including surgery and post-op will be paid for through my insurance company. I know this is a very heavy commitment and decision to make, so please take your time and don't feel pressured. It's very important that I find the right person who really wants to be a donor. The odds of people backing out are 50% up to the last day, so I'm looking for someone who is very committed.
Moving on to a brighter topic, did I mention I found a new favorite drink during my vacation? LOL. So I did.
For another brighter topic, how about "Cooking with Kim"? Liz, my blind state-appointed helper, recently had me buy ingredients to make Sloppy Joes and wanted to make sure I could hand-chop everything safely, without cutting myself. So, I showed her I could properly cut green peppers and onions, and clean it up, so she said to try it using my chopper from Pampered Chef, and to let out all of my aggressions on the chopper. I loaded it up with the vegetables and started pounding on it, and before I knew it, the food chopper went airborne and there were little onion and green pepper pieces flying all throughout the kitchen, along with multiple chopper parts because somehow it broke apart. We had to call in her driver to help us clean up the gigantic mess. We were laughing so hard. Fortunately, everything tasted great when it was all done, but when Steve came home he said, "Don't you ever cook again," because apparently we didn't clean it up completely before I had to run out to the doctor. It was a smelly, oniony hell for a while. But I did use stove, even though I was so scared, and I didn't catch anything on fire.
Other things that kept me busy this summer are: I met more visually impaired people and even attended a blind weekend retreat; read 20+ books; did more self-education; hired Christina (Lori Pritchett's daughter)to help me organize my multitude of papers and everything in the closets, which feels so good (she's worked here five days and I'm sure we'll miss her when she goes back to college); hung out with the kids; went to the pool and beach with Alyssa; went to Lake Geneva with Tyler; went to the movies; went to a Lake Forest beach party; went to my book club; DiTy, Patti and Nancy came out; Lori Pritchett came out; Mindy's been helping me out a lot and her daughter might be able to help me out soon; and I went to Ravinia...just to name a few.
Regarding my skin, as much as I love the summer, I've been trying to avoid the sun. I've not gone outside in weeks because I'm afraid of the consequences. I can go out in the sun for two hours and get what most people get in a week in a tan. I wear a 50 or greater sunscreen and I just absorb it very fast. In addition, my doctor said it may aggravate the dryness of my skin. Basically, my nephrologist feels my skin condition is a reflection of my kidney function being so poor, and when you have NSF, it worsens as your kidney function worsens. He could tell between three months ago and now that it's so much worse. The pain is worse, the skin is worse, and my joints are killing me. It's amazing how much it's changed. He thinks I need to go to Mayo Clinic and get it diagnosed once and for all, because then we'll know for sure what we're working with, although he's personally convinced it is NSF.
Regarding my eye status, I continue to go to U of I every 3-5 weeks for my laser treatments and eye injections. As of now, everything is status quo. My tumors remain unchanged in size in the past three months and the fluid is nearly gone. The doctor is still hopeful that the treatments will possibly shrink some of the tumors down, but is very happy that nothing has grown since we started, and, in fact, they have shrunk in the past five months. Unfortunately, my vision remains for the most part unchanged. I have a lot of good days per month, but a good day may mean an hour of seeing shadows. I see something almost every day, some days longer than others. A few days ago, I was able to see glimpses of color, the silhouette of my face, and Alyssa's coat and her jaw. When I brush my teeth, I can see my arm going up and down, but nothing useful in terms of getting around in life in general. It's not enough to keep me from having to hang on the walls when I'm walking, but it's enough to make me realize I'm not alone in the dark. It's really weird being in the dark, especially when it's quiet. It's almost like you're invisible or in another dimension.
I'm presently looking at a facility where I can go and learn more hands-on about being blind. It's a residential setting where 42 women and 42 men stay in dorm-like rooms, and they have classes offered from 9-5 daily for 14 weeks where you can improve your cane usage, cooking, cleaning, organizing, typing, computer skills, etc. You can leave Friday afternoon as long as you are back by Monday morning at 9am. They're going to try to get me in the late August or early September session. It's right by my doctor's office and I can leave for doctor appointments if needed.
It seems like summer just started, but Tyler leaves for school on August 15 and hopes to make the soccer team this year, and Alyssa starts school August 21. We better start using up our pool passes.
Before the summer ends, my entire family is coming in to visit, as well as Sheila's family, and we plan to go to the pools, go to the beach, and basically just spend a lot of quality time together.
Hope you all enjoyed your summer. I was hoping to have seen more of you and unfortunately time just goes too quickly. It was great to see those of you that I did.
Prior to the trip, I had quite a scare. I was having shortness of breath, extreme fatigue, major swelling of my legs, and 8lbs of fluid retention gained in several days. It was very scary as it happened so quickly. Before Florida, I had lab work done but never heard from my physician before I left for the trip, so I assumed everything was okay. Yet, my cell phone rang as we were waiting for our connection from Atlanta to Florida, with my doctor reporting how bad the lab work really was and how critical it was that I get back on a plane and go home. I said I didn't feel that bad any longer and I felt comfortable to go on with the trip, but I would seek medical attention if anything changed. He actually called me twice during the trip just to make sure I was okay, which was so sweet. I guess I really had him worried, and then he had me worry.
I wasn't sure until I got home what all was going on because he didn't really discuss it with me until then. Thankfully so, as I probably would have just been more focused on my health than I needed to be. I met with him that Friday, at which point he told me my kidney function several months ago was at 40%, but it was now at 15%, which is a sign for starting dialysis and looking for a transplant. I basically FREAKED OUT. I said, "Fifteen percent?? Is that with one kidney?" He said "No, that's counting both your kidneys." That is why he was so worried during the trip, because I have a lot of toxins in the body and it has to work very hard to go on, and that is why I get so fatigued.
Our goal now is to hopefully get me back to 20-30% so I can buy some time and look for a donor in the process. Over the course of June to the present, my labs have been at the 20% or 15% mark consistently, which means I'm closer to needing a donor now. He worries that if I don't have something arranged, the next time I have a rise in my numbers, it may not go down again and I may be put on dialysis permanently until a donor becomes available. He believes that is a much harder course to take because dialysis is very hard on the system, especially with all of my other medical problems.
So, I am asking you, your friends, your families, if anyone knows of anyone interested in being an organ donor, who happens to have blood type O+ and is healthy (no diabetes, high blood pressure, cancer, etc.), and is very serious about this. Please call me. A workup will be done prior to the final decision, and all medical fees prior to and including surgery and post-op will be paid for through my insurance company. I know this is a very heavy commitment and decision to make, so please take your time and don't feel pressured. It's very important that I find the right person who really wants to be a donor. The odds of people backing out are 50% up to the last day, so I'm looking for someone who is very committed.
Moving on to a brighter topic, did I mention I found a new favorite drink during my vacation? LOL. So I did.
For another brighter topic, how about "Cooking with Kim"? Liz, my blind state-appointed helper, recently had me buy ingredients to make Sloppy Joes and wanted to make sure I could hand-chop everything safely, without cutting myself. So, I showed her I could properly cut green peppers and onions, and clean it up, so she said to try it using my chopper from Pampered Chef, and to let out all of my aggressions on the chopper. I loaded it up with the vegetables and started pounding on it, and before I knew it, the food chopper went airborne and there were little onion and green pepper pieces flying all throughout the kitchen, along with multiple chopper parts because somehow it broke apart. We had to call in her driver to help us clean up the gigantic mess. We were laughing so hard. Fortunately, everything tasted great when it was all done, but when Steve came home he said, "Don't you ever cook again," because apparently we didn't clean it up completely before I had to run out to the doctor. It was a smelly, oniony hell for a while. But I did use stove, even though I was so scared, and I didn't catch anything on fire.
Other things that kept me busy this summer are: I met more visually impaired people and even attended a blind weekend retreat; read 20+ books; did more self-education; hired Christina (Lori Pritchett's daughter)to help me organize my multitude of papers and everything in the closets, which feels so good (she's worked here five days and I'm sure we'll miss her when she goes back to college); hung out with the kids; went to the pool and beach with Alyssa; went to Lake Geneva with Tyler; went to the movies; went to a Lake Forest beach party; went to my book club; DiTy, Patti and Nancy came out; Lori Pritchett came out; Mindy's been helping me out a lot and her daughter might be able to help me out soon; and I went to Ravinia...just to name a few.
Regarding my skin, as much as I love the summer, I've been trying to avoid the sun. I've not gone outside in weeks because I'm afraid of the consequences. I can go out in the sun for two hours and get what most people get in a week in a tan. I wear a 50 or greater sunscreen and I just absorb it very fast. In addition, my doctor said it may aggravate the dryness of my skin. Basically, my nephrologist feels my skin condition is a reflection of my kidney function being so poor, and when you have NSF, it worsens as your kidney function worsens. He could tell between three months ago and now that it's so much worse. The pain is worse, the skin is worse, and my joints are killing me. It's amazing how much it's changed. He thinks I need to go to Mayo Clinic and get it diagnosed once and for all, because then we'll know for sure what we're working with, although he's personally convinced it is NSF.
Regarding my eye status, I continue to go to U of I every 3-5 weeks for my laser treatments and eye injections. As of now, everything is status quo. My tumors remain unchanged in size in the past three months and the fluid is nearly gone. The doctor is still hopeful that the treatments will possibly shrink some of the tumors down, but is very happy that nothing has grown since we started, and, in fact, they have shrunk in the past five months. Unfortunately, my vision remains for the most part unchanged. I have a lot of good days per month, but a good day may mean an hour of seeing shadows. I see something almost every day, some days longer than others. A few days ago, I was able to see glimpses of color, the silhouette of my face, and Alyssa's coat and her jaw. When I brush my teeth, I can see my arm going up and down, but nothing useful in terms of getting around in life in general. It's not enough to keep me from having to hang on the walls when I'm walking, but it's enough to make me realize I'm not alone in the dark. It's really weird being in the dark, especially when it's quiet. It's almost like you're invisible or in another dimension.
I'm presently looking at a facility where I can go and learn more hands-on about being blind. It's a residential setting where 42 women and 42 men stay in dorm-like rooms, and they have classes offered from 9-5 daily for 14 weeks where you can improve your cane usage, cooking, cleaning, organizing, typing, computer skills, etc. You can leave Friday afternoon as long as you are back by Monday morning at 9am. They're going to try to get me in the late August or early September session. It's right by my doctor's office and I can leave for doctor appointments if needed.
It seems like summer just started, but Tyler leaves for school on August 15 and hopes to make the soccer team this year, and Alyssa starts school August 21. We better start using up our pool passes.
Before the summer ends, my entire family is coming in to visit, as well as Sheila's family, and we plan to go to the pools, go to the beach, and basically just spend a lot of quality time together.
Hope you all enjoyed your summer. I was hoping to have seen more of you and unfortunately time just goes too quickly. It was great to see those of you that I did.
Wednesday, May 7, 2014
100? Yes, 100 posts and counting :)
I'm so happy to see that spring has finally arrived, although somedays I feel like it's an April Fool's joke as our temperatures have been extremely cool. At least with the time change and the days being brighter longer, it feels more like springtime.
I'm looking forward to testing out my new cane in my subdivision. So far I've not yet left my cul-de-sac. I still require more cane training as I've only had two lessons from the State thus far. I really could use some help with how to get around in open areas as well as in restaurants, stores, and in general.
I still, believe it or not, get lost in my own house. It even happened yesterday. I have major trouble if I'm not completely focused. I cannot even talk and walk. I need to re-learn how to multitask if that is even possible. I'm told that as time goes on it will get easier and I will have fewer accidents, but this past month I've fallen off my front porch and I walked into a brick wall. Mind you, I had my stick with me both times. The first incident, I was focusing on holding my iPad and sitting on the front porch, but I missed a step and decided save the iPad and kill myself instead. Following that bloody episode, two weeks later, returning from the mailbox, I lost track of how many steps I'd taken and crashed into the corner of the brick wall and garage door. Those are my major aches. In addition, I have countless episodes when I smack my face or shin into open cabinets, dishwashers, boxes left out, etc. Being blind, I have realized, is a painful thing. I'm a walking bruise.
Following up from my last post, I have a lot of good things to announce. I have had a brain MRI, three spine MRIs, an abdomen and pelvis MRI, a mammogram, and my teeth cleaned, and all of these results came back with good news. My brain and spinal cord tumors remain unchanged. My kidney tumors also remain unchanged or questionably/slightly larger. They found two ovarian cysts that they will watch with ultrasound. The boobs are good. My teeth are nice and clean and my gums are healthy, although I had to get a crown. So, my general maintenance once again has been completed before summer. I have one last set of appointments this Friday for an upper GI and to see the pancreatic specialist and endocrine doctor. Then, it is my intention to only see the retinal specialist for my monthly eye injection and laser treatment.
A new issue has arisen during the winter (or I just became more aware of it). I have major sleep issues. I am up almost hourly during the night and have difficulty falling back asleep. I lay on my bed a total of at least 12 hours per night, yet I sleep probably half of that. I saw a sleep specialist who diagnosed me with this new Non-24 sleep disorder, which is common when you are completely blind. Basically, my circadian rhythm (do I sound smart?) is off as I do not perceive daylight and darkness like everyone else, and have trouble telling when it's a.m. or p.m. In addition to this problem, I get out of bed very late in the day and spend most of my day feeling terribly exhausted and fatigued, with no appetite or desire to do anything. I am unable to focus. I have tried drinking more coffee, pulling all-nighters, and tricking my body into getting into a normal sleep cycle, but have yet to get a positive result. I recently started on melatonin and low-dose Ridalin (ha ha) to give me a jump-start in the late morning/early afternoon, to attempt to normalize my day.
I am pushing myself to be more active. After getting out of my routine of walking every day on the treadmill, I have just restarted it this last week. I'm walking 4-5 times per week for 30 minutes. I now believe I understand (ding ding ding) why I have never lost weight; it's because I do not move. It is hard to move anywhere fast when you are blind. I really struggled mentally with my extra steroid weight, but I have resolved to the fact that it is nothing I can control right now. I just wish my body would go back to normal.
Still more good news: Regarding my eye, even though I remain blind, my retinal and optic nerve tumors are in fact getting slightly smaller and the fluid has lessened following my monthly treatments of laser and Avastin injections. The retina is almost reattached as things have progressed so well. My shadows remain black and white and I get them intermittently and more frequently every month. Yet, it's very random and some days I see no light perception at all. I feel encouraged, yet I still am not 100% sure that I'm going to get the vision the doctors were hoping for. But I'm so happy with the progress. At this point, I will take anything.
Regarding the chronic skin achiness, fatigue and swelling issues, we are assuming this is a mild case of NSF as my skin will never be as thick as the required diagnostic level, yet there is no other diagnosis they could label me with. My question is, should I pursue this with a trip to Mayo Clinic or not, because if it is not NSF, and there is something else that could be treated that they are missing, it would be to my benefit to go. My pain in my arms and legs and joints worsens by the week and I have no plan for what I'm going to do when everything becomes intolerable and I can't get out of bed or something. I still require pain pills to get up in the morning, although I still have pain because I feel no different. I'm having trouble getting my doctors to write this in my charts because they are afraid of being connected with a lawsuit. They don't want to diagnose this. My kidney function continues to decline, so one doctor is speculating that it is causing my skin problem, but my kidney doctor argues that my function would have to be so much worse before I'd be getting the symptoms that I have. So, I'm kind of caught between a rock and hard place and have stopped looking for an answer, after seeing so many doctors and having so many biopsies and still not getting a diagnosis. Their only advice for me is to continue to wear sunscreen and avoid the sun. So I wear SPF 99 sunscreen.
As I just realized that this is my 100th blog post, I decided we must celebrate. How nice, I just happened to have planned a family trip to sunny Ft. Lauderdale with our friends, Sheila and Barry and their kids Austin and Devin. This will be as usual a much-needed break, and hopefully our Marriott Resort and Spa will come through for us with great amenities and poolside drinks and lovely weather. We bon voyage in June. Perhaps I should start doing a few sit-ups.
Alyssa had her Oliver stage debut and did a wonderful job. She really comes alive on the stage and did a British accent throughout her performance. It was so cute. She loves performing. Since then, she has signed up to be in the talent show, and she will again be on stage next Thursday. This time, she will be singing and dancing to Counting Stars with a few of her friends. Perhaps I can get a video and put it on my Facebook page like my niece Emma did of her performance. Other than that, Girl Scouts has wrapped up for the year; she has gone camping; and she plans to attend a one-week overnight camp this summer in Wisconsin. It is the non-denominational Camp Timber-lee. It is incredible. They have a zip line, high rope wires, archery, horseback riding, water slides into a lake, a pier that they swim to that has a mini bouncy trampoline so you bounce the person in front of you into the water. They sleep in cabins with bathrooms and showers. The meals come from Panera, I believe. It's hard to bring Alyssa home after a week - she doesn't want to leave.
Tyler asked if he could go there and why we never sent him before, but I said his passion was soccer. Then he wanted to work at the camp. Instead, he will be working full time this summer at Great America. He will be operating one of those games you hate your kids to play, and I'm sure enjoying about 1/10th of the experience - that being the paycheck. He comes home from college next Thursday, May 15.
Steve is looking forward to his Las Vegas trip with his father and brother at the end of May, which will be followed by the family getaway in Florida with us. So, if he complains of being stressed after that, I will just put my earbuds in.
As for myself, I've spent my winter learning how to be blind, which sounds crazy but true. There are so many resources I have found and have yet to find. I have learned a lot more than I thought possible on an iPad and iPhone, yet still need to learn the computer system. All the commands and systems are completely different for the visually impaired, and it takes a lot of practice and education to know how to operate everything. I continue to listen to podcasts and attend seminars. I recently got accepted into the Hadley School for the Blind, and once I write a paper and they critique my basic level of knowledge, they will let me enroll in a class. They offer all of their classes for free to the blind as well as free to their families. So, hopefully, I can get that started this summer. Lastly, I continue to go to a monthly support group in Mundelein. It's a great outlet for me presently. In addition, I have found a social worker that deals with just blind clients, and she has been wonderful and a good resource for me. I read about three books a week, so if you have any suggestions on books or authors to read, please let me know.
As always, thank you to everybody who has helped me since my last post, but special thanks as usual goes out to my number one helper, who I could not do without, Suzanne, who spends 12-hour days with me at least weekly at the doctors without complaining and without food or drink, and it always ends up being the nicest weather day; to Delynn for all her driving, grocery shopping trips, and hours of help weeding through a living room full of clothes to sell, return, or donate (she's my catch-all person); to my college friends Lori P., Jeryl, Missy, and JJ the puppy who came over for a day, and it takes them almost 90 minutes to get here; to Mindy, my college friend, who takes me out every week; and to Angela who is reserving a day each month just for me.
I know everyone tends to be busy with school coming to a close. Please keep in contact or call soon so we can put a date in the calendar to get out and do something over the summer. Perhaps we can all meet at Arlington Park Race Track for a day.
I'm looking forward to testing out my new cane in my subdivision. So far I've not yet left my cul-de-sac. I still require more cane training as I've only had two lessons from the State thus far. I really could use some help with how to get around in open areas as well as in restaurants, stores, and in general.
I still, believe it or not, get lost in my own house. It even happened yesterday. I have major trouble if I'm not completely focused. I cannot even talk and walk. I need to re-learn how to multitask if that is even possible. I'm told that as time goes on it will get easier and I will have fewer accidents, but this past month I've fallen off my front porch and I walked into a brick wall. Mind you, I had my stick with me both times. The first incident, I was focusing on holding my iPad and sitting on the front porch, but I missed a step and decided save the iPad and kill myself instead. Following that bloody episode, two weeks later, returning from the mailbox, I lost track of how many steps I'd taken and crashed into the corner of the brick wall and garage door. Those are my major aches. In addition, I have countless episodes when I smack my face or shin into open cabinets, dishwashers, boxes left out, etc. Being blind, I have realized, is a painful thing. I'm a walking bruise.
Following up from my last post, I have a lot of good things to announce. I have had a brain MRI, three spine MRIs, an abdomen and pelvis MRI, a mammogram, and my teeth cleaned, and all of these results came back with good news. My brain and spinal cord tumors remain unchanged. My kidney tumors also remain unchanged or questionably/slightly larger. They found two ovarian cysts that they will watch with ultrasound. The boobs are good. My teeth are nice and clean and my gums are healthy, although I had to get a crown. So, my general maintenance once again has been completed before summer. I have one last set of appointments this Friday for an upper GI and to see the pancreatic specialist and endocrine doctor. Then, it is my intention to only see the retinal specialist for my monthly eye injection and laser treatment.
A new issue has arisen during the winter (or I just became more aware of it). I have major sleep issues. I am up almost hourly during the night and have difficulty falling back asleep. I lay on my bed a total of at least 12 hours per night, yet I sleep probably half of that. I saw a sleep specialist who diagnosed me with this new Non-24 sleep disorder, which is common when you are completely blind. Basically, my circadian rhythm (do I sound smart?) is off as I do not perceive daylight and darkness like everyone else, and have trouble telling when it's a.m. or p.m. In addition to this problem, I get out of bed very late in the day and spend most of my day feeling terribly exhausted and fatigued, with no appetite or desire to do anything. I am unable to focus. I have tried drinking more coffee, pulling all-nighters, and tricking my body into getting into a normal sleep cycle, but have yet to get a positive result. I recently started on melatonin and low-dose Ridalin (ha ha) to give me a jump-start in the late morning/early afternoon, to attempt to normalize my day.
I am pushing myself to be more active. After getting out of my routine of walking every day on the treadmill, I have just restarted it this last week. I'm walking 4-5 times per week for 30 minutes. I now believe I understand (ding ding ding) why I have never lost weight; it's because I do not move. It is hard to move anywhere fast when you are blind. I really struggled mentally with my extra steroid weight, but I have resolved to the fact that it is nothing I can control right now. I just wish my body would go back to normal.
Still more good news: Regarding my eye, even though I remain blind, my retinal and optic nerve tumors are in fact getting slightly smaller and the fluid has lessened following my monthly treatments of laser and Avastin injections. The retina is almost reattached as things have progressed so well. My shadows remain black and white and I get them intermittently and more frequently every month. Yet, it's very random and some days I see no light perception at all. I feel encouraged, yet I still am not 100% sure that I'm going to get the vision the doctors were hoping for. But I'm so happy with the progress. At this point, I will take anything.
Regarding the chronic skin achiness, fatigue and swelling issues, we are assuming this is a mild case of NSF as my skin will never be as thick as the required diagnostic level, yet there is no other diagnosis they could label me with. My question is, should I pursue this with a trip to Mayo Clinic or not, because if it is not NSF, and there is something else that could be treated that they are missing, it would be to my benefit to go. My pain in my arms and legs and joints worsens by the week and I have no plan for what I'm going to do when everything becomes intolerable and I can't get out of bed or something. I still require pain pills to get up in the morning, although I still have pain because I feel no different. I'm having trouble getting my doctors to write this in my charts because they are afraid of being connected with a lawsuit. They don't want to diagnose this. My kidney function continues to decline, so one doctor is speculating that it is causing my skin problem, but my kidney doctor argues that my function would have to be so much worse before I'd be getting the symptoms that I have. So, I'm kind of caught between a rock and hard place and have stopped looking for an answer, after seeing so many doctors and having so many biopsies and still not getting a diagnosis. Their only advice for me is to continue to wear sunscreen and avoid the sun. So I wear SPF 99 sunscreen.
As I just realized that this is my 100th blog post, I decided we must celebrate. How nice, I just happened to have planned a family trip to sunny Ft. Lauderdale with our friends, Sheila and Barry and their kids Austin and Devin. This will be as usual a much-needed break, and hopefully our Marriott Resort and Spa will come through for us with great amenities and poolside drinks and lovely weather. We bon voyage in June. Perhaps I should start doing a few sit-ups.
Alyssa had her Oliver stage debut and did a wonderful job. She really comes alive on the stage and did a British accent throughout her performance. It was so cute. She loves performing. Since then, she has signed up to be in the talent show, and she will again be on stage next Thursday. This time, she will be singing and dancing to Counting Stars with a few of her friends. Perhaps I can get a video and put it on my Facebook page like my niece Emma did of her performance. Other than that, Girl Scouts has wrapped up for the year; she has gone camping; and she plans to attend a one-week overnight camp this summer in Wisconsin. It is the non-denominational Camp Timber-lee. It is incredible. They have a zip line, high rope wires, archery, horseback riding, water slides into a lake, a pier that they swim to that has a mini bouncy trampoline so you bounce the person in front of you into the water. They sleep in cabins with bathrooms and showers. The meals come from Panera, I believe. It's hard to bring Alyssa home after a week - she doesn't want to leave.
Tyler asked if he could go there and why we never sent him before, but I said his passion was soccer. Then he wanted to work at the camp. Instead, he will be working full time this summer at Great America. He will be operating one of those games you hate your kids to play, and I'm sure enjoying about 1/10th of the experience - that being the paycheck. He comes home from college next Thursday, May 15.
Steve is looking forward to his Las Vegas trip with his father and brother at the end of May, which will be followed by the family getaway in Florida with us. So, if he complains of being stressed after that, I will just put my earbuds in.
As for myself, I've spent my winter learning how to be blind, which sounds crazy but true. There are so many resources I have found and have yet to find. I have learned a lot more than I thought possible on an iPad and iPhone, yet still need to learn the computer system. All the commands and systems are completely different for the visually impaired, and it takes a lot of practice and education to know how to operate everything. I continue to listen to podcasts and attend seminars. I recently got accepted into the Hadley School for the Blind, and once I write a paper and they critique my basic level of knowledge, they will let me enroll in a class. They offer all of their classes for free to the blind as well as free to their families. So, hopefully, I can get that started this summer. Lastly, I continue to go to a monthly support group in Mundelein. It's a great outlet for me presently. In addition, I have found a social worker that deals with just blind clients, and she has been wonderful and a good resource for me. I read about three books a week, so if you have any suggestions on books or authors to read, please let me know.
As always, thank you to everybody who has helped me since my last post, but special thanks as usual goes out to my number one helper, who I could not do without, Suzanne, who spends 12-hour days with me at least weekly at the doctors without complaining and without food or drink, and it always ends up being the nicest weather day; to Delynn for all her driving, grocery shopping trips, and hours of help weeding through a living room full of clothes to sell, return, or donate (she's my catch-all person); to my college friends Lori P., Jeryl, Missy, and JJ the puppy who came over for a day, and it takes them almost 90 minutes to get here; to Mindy, my college friend, who takes me out every week; and to Angela who is reserving a day each month just for me.
I know everyone tends to be busy with school coming to a close. Please keep in contact or call soon so we can put a date in the calendar to get out and do something over the summer. Perhaps we can all meet at Arlington Park Race Track for a day.
Monday, February 17, 2014
Things are looking brighter all around
Happy New Year! Hopefully most of you received a Christmas card from me this year. Steve couldn't find addresses for everyone, so if we missed you and you still want one, please let me know.
Everything went as planned over the holidays. We had a great extended holiday period. Tyler was home for almost a month and Alyssa had two weeks off. Santa brought everything they wanted. Over the break, we attended all the family get-togethers per our usual routine, and it was great to "see" and catch up with everyone. It seems everyone is growing up, yet we are all still young-spirited. We played all the kid games and exchanged gifts like we've done for years. This year the highlight was that all 10 kids brought a bathing suit to my cousin's for the Jacuzzi, and as it snowed, they took turns lying on the freezing cold patio making snow angels. It was so funny and cute.
As you know, this winter has hit us with not only 60+ inches of snow but absolutely bitter temperatures as well. We still managed to get in our ski/snowboard trip to Alpine Valley. It was like 15 degrees and windy. Sheila and I stayed in the resort for the whole time and found an excuse to visit the bar. The rest of our families took turns hitting the slopes and warming up. Even the big boys, Barry and Steve, got out there and skied. We had dinner and spent the night in Elkhorn, and the next day Tyler and the other kids braved the cold again and spent the day in downtown Chicago, where they even fed the hungry.
I avoided doctors throughout the entire Christmas season until Jan. 13, when I got a bladder infection. I had my third eye injection and laser treatment in January and I told my eye oncologist, Dr. Mieler, that I've had more days with improved shadows, yet I haven't seen anything in color lately. He was again pleased that I was having progress. My eye pressures have been 18 and 19 over the last month, which are very good readings for me. When he looked into my eye, he said, "I'm not just saying this to make you feel good, and I don't just say things to my patients unless I really feel something is changing, but looking into your eye, I think we may have a miracle happening." He added, "Since we started this treatment, not only is there improvement as to what you are seeing, but we are seeing the tumor size shrinking and getting flatter, and the fluid is being absorbed. If this continues, eventually the flattening of the tumor will cause the retina to reattach itself." I asked if surgery is needed but he says he doesn't know yet, but a lot of times the eye can form the cells needed to reattach. If the tumor keeps shrinking every month, and it takes the weight off that optic nerve, that's what's preventing light from getting to the retina. He seems fairly excited. He said, "I can't tell if you'll get complete vision back or color, but I know that your vision will get better." There has been more progress since that visit and I'll see him again on Wednesday for treatment #4. We'll continue this monthly as long as the progress continues.
Regarding my hysterectomy, at my six-week checkup, everything was good. I am now back to starting a series of six-month follow-ups. I just scheduled March 14 appointments with my neurologist and my GI/pancreas physician, and I have an appointment this Thursday for a kidney MRI and blood work.
I'm also scheduled on Thursday for a seminar at the Lighthouse for the Blind to meet with an eye surgeon and some engineers who are putting together an eye transplant for people who only have light perception. I qualify to be on the focus group and will get $75 to share what I think about this idea and offer suggestions. In addition, I somehow got hooked up to be a tester of films that will be available in my home. It's a streaming service like Netflix, but it's talk flicks for the blind. I'll get a headset of some sort to listen to TV shows and movies with extra narration, and it will not affect my family's viewing because I'll be the only one hearing it. I'm excited about being on the test panel and I'm waiting for the first kit to come in the mail so I can get started.
This week I also did a phone appointment with the endocrine doctor. I had told her of my situation regarding my skin, fatigue, achiness, swelling and joint pain, and she read up on all of my case notes. She thinks I should not change my steroids until I go to Mayo Clinic. She highly recommends I go there because everyone else is quite stumped. It appears to be NSF but my skin is not as thick as normal for NSF because I have been on steroids for so long.
I'm now doing physical therapy at home for my right arm, shoulder, and hip for bone and muscular pain. The therapist thinks it's a combination injury caused from being visually impaired, because it's not a typical injury. I'm either falling and hitting random areas, or I have something systemic going on. We're doing a combination of exercises and massage. She also recommends having this checked at Mayo Clinic.
I have a new social worker. Marsha works for Second Sense in the city. They have programs for the blind and their families. Patients and family members can go online and connect with others like them and read and learn about coping with vision loss. Marsha and I talk every Tuesday. Last week she wanted me to ask my family how my vision loss affected them. At least Alyssa was open and honest. Marsha feels my family is still in the denial phase and not accepting of it yet. I don't understand why that would take so long, but she said it's because it has so much of an impact on them. She said everybody is different and so we are talking through ways to handle it. Another girl at Second Sense offers classes and one-on-one sessions; for example, she can come to my house and teach me to cook a certain meal so that I'm not afraid of the stove or of cooking in general. I signed up for a very small, four-hour iPhone/iPad training class on March 22 that will be very comprehensive and include handouts. I'm so excited for that because I've been having trouble with my devices.
There's a park district service available for disabled people that offers a number of athletic classes that include a one-on-one coach/guide. For example, they offer swimming, running, skiing, track and field, judo, weight lifting, canoeing, sail boating, tandem bike riding, basketball, etc. They even have a variation of soccer where the ball makes a noise so you can hear it coming. Most of these classes are offered free of charge. I'll wait to sign up until the winter is over and I'm in better shape. I'm using the treadmill about five days per week now and walking 1.5 miles each time. My PT says I should get hand and ankle weights as well. I'm also trying to eat better.
I went to the support group last Wednesday and got about 20 podcasts uploaded from Hadley School for the Blind. They are hour-long seminars on different tech topics like PowerPoint, Facebook, etc. One guy is going to send me some iPad game apps for the blind, and I shared information with the group about the eye transplant seminar.
Tyler now has a 3.2 or 3.3 GPA at school, which is good. Alyssa has As and Bs just like Tyler. They are neck and neck. Alyssa's biggest highlight now is that she tried out for the play Oliver, and she will be singing five songs and playing the role of a doctor with some talking parts, so she's excited. The show is in March. This improv group is in addition to her soccer, girl scouts, and tap dancing. She seems happier lately. Tyler is coming home next weekend for his job interview at Great America. He wants to work there for the summer and take a family vacation to Disney World. I think my son is the forever child, like me.
Steve has been nice and that makes life so much nicer. He got me two Starbucks coffees this week, he got me my favorite Fannie Mae chocolates for Valentine's Day, we went out to eat alone for the first time in a long time (I'm not talking months, I'm talking years), and we even had some bottles of wine together. I bought him a massage in return. It was a good week. He's still working out about five days a week, eating healthy with no fast food, and he's lost 15 pounds already. He wouldn't even eat the heart-shaped pizzas that we got for Alyssa for Valentine's Day at Lou Malnati's.
My social worker said my job this week is to talk with my friends to see how my vision has affected them. This is something that has weighed heavily on my mind because I had never had a blind friend in my entire life either. I know most people are afraid of or uncomfortable with blind people. I used to be, but now I'm not scared of myself. I know some people are worried about feeling responsible for me, and I understand that it's harder and more time consuming for them. I'd love to hear your thoughts.
I can't wait for this winter to end. I look forward to sunnier and warmer weather. I wish we were traveling for spring break but we will probably take a June or July vacation. I've been listening to audio books and have really found that as a good escape this winter. If you have any good books to recommend, let me know.
Everything went as planned over the holidays. We had a great extended holiday period. Tyler was home for almost a month and Alyssa had two weeks off. Santa brought everything they wanted. Over the break, we attended all the family get-togethers per our usual routine, and it was great to "see" and catch up with everyone. It seems everyone is growing up, yet we are all still young-spirited. We played all the kid games and exchanged gifts like we've done for years. This year the highlight was that all 10 kids brought a bathing suit to my cousin's for the Jacuzzi, and as it snowed, they took turns lying on the freezing cold patio making snow angels. It was so funny and cute.
As you know, this winter has hit us with not only 60+ inches of snow but absolutely bitter temperatures as well. We still managed to get in our ski/snowboard trip to Alpine Valley. It was like 15 degrees and windy. Sheila and I stayed in the resort for the whole time and found an excuse to visit the bar. The rest of our families took turns hitting the slopes and warming up. Even the big boys, Barry and Steve, got out there and skied. We had dinner and spent the night in Elkhorn, and the next day Tyler and the other kids braved the cold again and spent the day in downtown Chicago, where they even fed the hungry.
I avoided doctors throughout the entire Christmas season until Jan. 13, when I got a bladder infection. I had my third eye injection and laser treatment in January and I told my eye oncologist, Dr. Mieler, that I've had more days with improved shadows, yet I haven't seen anything in color lately. He was again pleased that I was having progress. My eye pressures have been 18 and 19 over the last month, which are very good readings for me. When he looked into my eye, he said, "I'm not just saying this to make you feel good, and I don't just say things to my patients unless I really feel something is changing, but looking into your eye, I think we may have a miracle happening." He added, "Since we started this treatment, not only is there improvement as to what you are seeing, but we are seeing the tumor size shrinking and getting flatter, and the fluid is being absorbed. If this continues, eventually the flattening of the tumor will cause the retina to reattach itself." I asked if surgery is needed but he says he doesn't know yet, but a lot of times the eye can form the cells needed to reattach. If the tumor keeps shrinking every month, and it takes the weight off that optic nerve, that's what's preventing light from getting to the retina. He seems fairly excited. He said, "I can't tell if you'll get complete vision back or color, but I know that your vision will get better." There has been more progress since that visit and I'll see him again on Wednesday for treatment #4. We'll continue this monthly as long as the progress continues.
Regarding my hysterectomy, at my six-week checkup, everything was good. I am now back to starting a series of six-month follow-ups. I just scheduled March 14 appointments with my neurologist and my GI/pancreas physician, and I have an appointment this Thursday for a kidney MRI and blood work.
I'm also scheduled on Thursday for a seminar at the Lighthouse for the Blind to meet with an eye surgeon and some engineers who are putting together an eye transplant for people who only have light perception. I qualify to be on the focus group and will get $75 to share what I think about this idea and offer suggestions. In addition, I somehow got hooked up to be a tester of films that will be available in my home. It's a streaming service like Netflix, but it's talk flicks for the blind. I'll get a headset of some sort to listen to TV shows and movies with extra narration, and it will not affect my family's viewing because I'll be the only one hearing it. I'm excited about being on the test panel and I'm waiting for the first kit to come in the mail so I can get started.
This week I also did a phone appointment with the endocrine doctor. I had told her of my situation regarding my skin, fatigue, achiness, swelling and joint pain, and she read up on all of my case notes. She thinks I should not change my steroids until I go to Mayo Clinic. She highly recommends I go there because everyone else is quite stumped. It appears to be NSF but my skin is not as thick as normal for NSF because I have been on steroids for so long.
I'm now doing physical therapy at home for my right arm, shoulder, and hip for bone and muscular pain. The therapist thinks it's a combination injury caused from being visually impaired, because it's not a typical injury. I'm either falling and hitting random areas, or I have something systemic going on. We're doing a combination of exercises and massage. She also recommends having this checked at Mayo Clinic.
I have a new social worker. Marsha works for Second Sense in the city. They have programs for the blind and their families. Patients and family members can go online and connect with others like them and read and learn about coping with vision loss. Marsha and I talk every Tuesday. Last week she wanted me to ask my family how my vision loss affected them. At least Alyssa was open and honest. Marsha feels my family is still in the denial phase and not accepting of it yet. I don't understand why that would take so long, but she said it's because it has so much of an impact on them. She said everybody is different and so we are talking through ways to handle it. Another girl at Second Sense offers classes and one-on-one sessions; for example, she can come to my house and teach me to cook a certain meal so that I'm not afraid of the stove or of cooking in general. I signed up for a very small, four-hour iPhone/iPad training class on March 22 that will be very comprehensive and include handouts. I'm so excited for that because I've been having trouble with my devices.
There's a park district service available for disabled people that offers a number of athletic classes that include a one-on-one coach/guide. For example, they offer swimming, running, skiing, track and field, judo, weight lifting, canoeing, sail boating, tandem bike riding, basketball, etc. They even have a variation of soccer where the ball makes a noise so you can hear it coming. Most of these classes are offered free of charge. I'll wait to sign up until the winter is over and I'm in better shape. I'm using the treadmill about five days per week now and walking 1.5 miles each time. My PT says I should get hand and ankle weights as well. I'm also trying to eat better.
I went to the support group last Wednesday and got about 20 podcasts uploaded from Hadley School for the Blind. They are hour-long seminars on different tech topics like PowerPoint, Facebook, etc. One guy is going to send me some iPad game apps for the blind, and I shared information with the group about the eye transplant seminar.
Tyler now has a 3.2 or 3.3 GPA at school, which is good. Alyssa has As and Bs just like Tyler. They are neck and neck. Alyssa's biggest highlight now is that she tried out for the play Oliver, and she will be singing five songs and playing the role of a doctor with some talking parts, so she's excited. The show is in March. This improv group is in addition to her soccer, girl scouts, and tap dancing. She seems happier lately. Tyler is coming home next weekend for his job interview at Great America. He wants to work there for the summer and take a family vacation to Disney World. I think my son is the forever child, like me.
Steve has been nice and that makes life so much nicer. He got me two Starbucks coffees this week, he got me my favorite Fannie Mae chocolates for Valentine's Day, we went out to eat alone for the first time in a long time (I'm not talking months, I'm talking years), and we even had some bottles of wine together. I bought him a massage in return. It was a good week. He's still working out about five days a week, eating healthy with no fast food, and he's lost 15 pounds already. He wouldn't even eat the heart-shaped pizzas that we got for Alyssa for Valentine's Day at Lou Malnati's.
My social worker said my job this week is to talk with my friends to see how my vision has affected them. This is something that has weighed heavily on my mind because I had never had a blind friend in my entire life either. I know most people are afraid of or uncomfortable with blind people. I used to be, but now I'm not scared of myself. I know some people are worried about feeling responsible for me, and I understand that it's harder and more time consuming for them. I'd love to hear your thoughts.
I can't wait for this winter to end. I look forward to sunnier and warmer weather. I wish we were traveling for spring break but we will probably take a June or July vacation. I've been listening to audio books and have really found that as a good escape this winter. If you have any good books to recommend, let me know.
Friday, December 13, 2013
My new motto: I take the "t" out of the word "can't"
As much as this has been a tough year, I realize I still have a lot to be thankful for. My latest good news came Wednesday. Suzanne and I went to see the eye oncologist, Dr. Mieler, for my monthly visit. We took photos to monitor for changes, then proceeded with laser to both the retinal and optic nerve tumor, and then I had an eye injection of a chemo drug to prevent further vascular growth of tumors. Unfortunately, my glaucoma pressure was 28, which is somewhat high, so I had to have an additional needle inserted and fluid withdrawn (good thing for numbing drops). The best news was that in addition to my seeing some better shadows in the last 10 days to two weeks, I had an episode 2.5 weeks ago when I saw color for the first time in 15 months (since Sept. 13, 2012, to be exact). It was definitely not imagined because the colors I saw matched the colors people were actually wearing and they verified that my perception was correct. The doctor did not expect me to notice much of a change after just one treatment, and is now very hopeful that I will continue to have improved vision as we continue the monthly treatments.
I'm also thankful about finally having my hysterectomy on Nov. 22 and there were no complications...knock on wood. It was my first surgery I think ever without a glitch, which is amazing.
In addition to those two blessings, I'm thankful to everyone who helped me throughout the year - friends, family, and therapists - who have been trying to make my life easier and get me through this most difficult time. I still think God made a mistake when he picked me to be blind because I don't adapt to this disability very well.
Yesterday I saw yet another dermatologist to hopefully, finally, determine what is wrong with my skin, but I left very frustrated. I'd seen two dermatologists and two rheumatologists, had eight skin biopsies and at least 50 tubes of blood drawn. I know what I don't have, but in terms of what it is, if it's not NSF, the doctors are baffled. Definitely they ruled out a rheumatology-based diagnosis. My skin continues to worsen as well as my joints being more painful. My bone pain, fatigue, and all the other symptoms also continue to worsen. So, I was excited when I heard about this new dermatologist who is at Northwestern and comes highly recommended by the NSF Foundation specialists from Yale. However, at my appointment we found out that she is very elderly, set in her thinking, and didn't seem to have any suggestion as to what I have. She was quick to discount NSF because I walked into the office, and she said she has never seen anyone move who has NSF. In order to diagnose it, she wanted my skin to be attached down to the bone level so I would be stiff and couldn't move. She then thought it was prophyria, but I've already been diagnosed with pseudo-prophyria. She has also never heard of VHL. She recommended I see her again in two months but in the meantime I'll decide whether that would be worthwhile. When you research NSF, it says it's a gradual progression, so if I have it I want to know soon so I can try to stop it.
I have one more appointment with the glaucoma specialist next week about my pressure, and then I'm going to try not to see any more doctors for the rest of the year, if I can do that.
This month I've found so many helpful new resources. I have recently gotten involved with the Lighthouse for the Blind in Glenview and I'm taking iPhone and iPad training. I work in addition with a girl in occupational therapy there who deals with the basics of everyday cooking, organization - things that are easy for the sighted to do but are not when you can't see. There's also an entertainment lady there named Pam who puts together trips to the movies, theater, art institute, dinners and seminars for blind people, and she invited me to their Christmas party and cookie exchange next week. It's nice that I'm finally meeting people who I feel can relate to me and I can ask them questions without feeling stupid or whatever. They have lots of resources to offer that I never heard of or would have found without them.
In addition, they put together a little packet in printed format that I can read at home on a new machine that I got just last month. It's called the SARA, it looks like a mini copy machine (8x11), and on the top arm is a camera that copies the page and reads it to me, as long as the words are typewritten. I can read my mail, magazines and any book or other literature, but nothing handwritten, and newspaper columns and ads are awkward. But, overall, it's really handy. You can set it to continually scan the pages and read it all at once, which is good for books especially. It stores an unbelievable amount of memory and computer files. Everything on my computer screen I can put on my SARA and it will read it to me. It's worth like $2,000 but I got it for free from the State.
I still attend the Mundelein Center's support group for disabled people and they had a Christmas gathering last night, which I attended with my neighbor. I have become friends with my coffee buddy from the Mundelein Center, who I call Blind Judy, and her seeing eye dog Winter. She has been incredibly informative for me. She's been losing her vision since she was five years old and the bulk of it was lost in the last 10 years. She got her first seeing eye dog then, and Winter is now her third. She's taken tons of classes at Hadley School for the Blind and she gave me the information to get a catalog and sign up for their online classes. You can learn all sorts of things like Spanish or French, scrapbooking, drawing, etc., and it's all geared for blind people. You get credit for it that could potentially go toward a degree. She also hooked me up with Second Sense, which has seminars for the blind and they do a lot of things for the families as well, such as a 24-hour experience blindfolded and I SO want my family to do it. Another girl gives me podcasts and I listen to them like a book.
I recently had a most wonderful week of accomplishment. My sister Robin flew in from Pennsylvania on a buddy pass from Brian and Darlene Schick (thank you!) for nearly a week. We spent numerous hours both cleaning and organizing the kitchen, files, clothes, closets, and in addition we went grocery shopping. She made and froze seven family meals. We threw out seven garbage bags of stuff from the kitchen alone (e.g., iced tea that expired in 2009). She ordered me all new storage containers where the lids attach to the base. We donated 20-some sweaters to Goodwill and she helped me throw out clothes that I didn't know were stained. She took me to two appointments and we went out for a couple breaks as well. For six days straight, we started working between 10AM and noon and were up until 1-2AM working. It was very intense and I have to say it was probably no fun for Robin, honest to God, but she was so much appreciated and so much was accomplished in such a short time, that I can't thank her enough. Compared to the girl I paid to work here for 16 hours, Robin did that much work in one hour. Not only did she give up time with her kids, but she could have been with her husband and father-in-law who was in critical condition if she were not helping me. She never complained. Now I'm wracking my brain for an ever-so-special, thoughtful gift for Robin.
Christmas Eve and Day we'll spend with my whole family as we always do. It's a 48-hour good time. My neighbor is having a New Year's Eve party. We had our annual book club Christmas party on Tuesday with an ornament game, and I got a really good one. I also had a couple cookie exchanges, so I need to get better at blind baking. I got a lot of early and online Christmas shopping done ahead of my surgery and I'm almost done with that. Sheila's family is coming in town from Atlanta and we're all going to Alpine Valley for a couple of days of skiing and snowboarding right after New Year's.
Tyler finishes his finals on Monday and hopefully he'll keep his As and Bs. Alyssa also has As and Bs and we're trying to spend more time on consistent study habits with her. They're both looking forward to the break and Alyssa is excited for Christmas. She has a few parties herself to attend. Steve had his 51st birthday and decided to make a big change to his life and joined the Park District health club. He's been spending about 4-5 days there per week working out and he's watching his diet. Hopefully this will assist in destressing him so that he will be a little less tense, and more lean and hopefully not so mean (ha ha) for the new year. My birthday is later this month and I'll probably celebrate it with the girls next month.
I'm worried about my brother Jeff because he's really not doing very well. He has had on-and-off pain for about two months that is increasing in his back and stomach, although his tumor has not changed in size (16cm). He has also lost a great deal of weight and is getting dizzy spells and headaches, and one of his brain tumors has developed a cyst. When it changes again in size, he will most likely require surgery. So, he has been kind of down for the holidays and wasn't able to enjoy any food for Thanksgiving. I'd like him to go to the Clinical Care Center here for an evaluation. Please send your thoughts and prayers Jeff's way, and continue to pray that my eye has further miraculous improvement.
Wishing you the blessings of the season and a happy and healthy 2014!
Wednesday, October 23, 2013
Balancing the good, the bad, and the ugly skin
Boo! I hope this post finds you all getting into a bone-chilling mood for Halloween.
Regarding my eye, after 10-15 appointments over the past three months, I feel like I've been through a whirlwind of ups and downs. First and foremost, the worst problem is that I had found a new chemo eye injection that I was willing to try, so I went to see a retinal specialist at UofC for his opinion, and when he looked into my eye, he said "Oh my gosh, your eye has changed dramatically in the past nine months." He said my tumor is much larger and has partially detached my retina and lifted it up so that it no longer lays flat. Normally, a detached retina requires emergency surgery to repair as it works best to save vision when done quickly. Yet, due to the large size of my tumor and it pushing my retina up, I am not even a surgical candidate unless my tumor will shrink. His feeling on the chemo drug Eylea is that it would not shrink the tumor due to its size, but had I tried this when it was smaller nine months ago, I might have had better results. When I asked him what he would do if it were him, he told me to pray. I said no, really, seriously, and he said again, "I would pray. I'm going to contact several experts in the area but I really don't know if there is anything more we can do for you."
I am very disappointed because I knew my vision had been changing rapidly, and every time I questioned my usual doctor, Dr. Cohen, he stated everything looked the same and he never told me of the growth. Nothing I can do now; hindsight is 20/20.
One of the experts that the retinal specialist contacted at the University of Illinois, Dr. Mieler, I have now seen three times. He has not used the Eylea chemo on me as it is $1,800 per injection and not covered by my insurance for my diagnosis. Instead, he is using a similar chemo, which he injected into my eye. Now, I will wait four weeks and have a re-injection done on Nov. 30, and follow it with a laser treatment in hopes that it will start to shrink the tumor. He said he can't promise anything, but as long as I'm willing to try and since I have no vision to speak of, I have nothing to lose.
There is going to be a study at NIH that requires monthly trips to their facility for phase 1 trial treatments. I'm waiting for Dr. Chu to call me with more details and to decide whether or not I'm a candidate for this trial.
During this whole process, my glaucoma has gone absolutely out of control. A normal level is 8-15. A low level means your eye is soft and a high level means your eyeball is hard and can rupture. My numbers have been as low as 4 and as high as 61. 61 is one of the highest readings the doctor has ever seen and he thought I would require surgery in order to stabilize my pressure. Thankfully, we found the right cocktail of eye drops and pills and my pressure has been ranging between 18-30 lately. I am having this monitored every 1-2 weeks.
Regarding my kidney, I finally was able to get an MRI and ultrasound of my kidneys done in early August. As I was unable to receive contrast, my doctor met with a team of radiologists and a specialist and they feel that there has been little or no change in the last six months. However, I do have a change in my kidney function, which is causing them to focus on me more closely. My blood pressure has been extremely high, so they have me recording it three times per day, and the function per blood work continues to decrease. I feel I am more swollen in my hands, joints, and face as I retain more fluid due to this problem. I will have a follow-up MRI in January.
My most bothersome problem since July has been my skin and the pain associated with it. My skin had been for several years very thin and would rip like an elderly person's. This summer, many people began to notice a change in the color and leather-like appearance of my skin on my arm. I saw my dermatologist regarding this in mid-August and he, along with two other nephrologists, feels that this may now be a condition called "NSF" (nephrogenic systemic fibrosis). What does this mean? This is a condition that is very rare that is caused by receiving contrast for an MRI scan with poor kidney function. The toxins injected to help view in the MRI get trapped in the cells and cannot get out through your kidneys. Basically, you start to develop fibrin and collagen growths that are visible externally, yet they also internally damage your liver, heart, lungs, and cause them to become very sickened. My brother Steve had this condition and it caused him severe pain in his joints. When he died, he had heart issues and lung problems that they felt were related to this condition. On his autopsy, they determined that this was a significant cause of his death.
Some of the symptoms of NSF are blood clots of no apparent cause (I've had two), incredible itching or burning of the skin, bone pain especially in hips and arms, leather-like appearance of skin, and eventual restriction of movement of joints. This condition can rapidly progress or take years to progress. Whatever I had started in July on my arms and has now moved to my feet, ankles, calves, thighs, hands, back, and chest area. Thankfully, it does not go to your face. I am still waiting for a full diagnosis. I have seen two dermatologists, my internist, and the first of two rheumatologists. There is no blood test to diagnose this and there are only 400+ reported cases in the registry at Yale. If I do not have this condition, I'd like to know what I have. It's making me crazy.
Again today I returned to see my local dermatologist, who decided to take four further biopsies as he felt since August there has been a dramatic change in the appearance and spread of the skin condition. He encouraged me to see a rhumatologist ASAP to rule out any form of Lupus, as he said Lupus has a lot of similar symptoms as the NSF. Lupus is an autoimmune disorder where your body attacks itself, usually following an acute infection or illness. It definitely includes achiness, joint pain, swelling of hands, ankles and wrists, fatigue, fever of unknown origin, and skin rash that varies in appearance. This can be treated with steroids and topical medications, whereas NSF has no treatment other than a kidney transplant. Lupus can be diagnosed through a series of blood tests while NSF is diagnosed by ruling out everything else. If it's not Lupus, they think it might be NSF. Hopefully we're getting closer to an answer. Dr. Lahti prescribed me a few new cocktails to take for anti-itching because I felt I was going to lose my mind from that.
I still use my cane to navigate mostly through my home and at some local stores, yet I require much more training in this area. I have gotten lost walking from my front yard to my back yard with the cane. When in an open area, it is hard to tell where you are, and I nearly walked into a road once but was stopped by a tree branch in the face. It is very scary to know how easily I can get lost. It takes a lot of focus and concentration and counting of steps so I know about how far I am away from my starting point.
Regarding the mysteriously box from the State, I finally received it the first week in October and, sadly enough, it contained a machine that is no longer useful to me as my vision has changed so significantly for the worse. Thankfully, I am expecting a delivery in the next several weeks of a machine that will take a picture of any printed material I put underneath it and then it will have a Siri-like voice read it to me. I can't wait to get it. I'm so excited.
So what does my next month hold? More trips to the eye doctor, skin doctor, and round two of repairing my prolapse. I'm scheduled on Nov. 22 for a hysterectomy at Lutheran General Hospital with a one-night hospital stay. Hopefully this time there won't be a problem.
On the bright side, my daughter Alyssa turns 11 tomorrow, although in her mind she's already a teenager. We're postponing her birthday party as she's had a rough couple of months. She broke her right arm six weeks ago rollerblading and broke her left arm nine days ago playing soccer. At least she kicked that winning goal before she went down. She's been a good sport. Whoever thought there would be such a selection of colors to choose from -- she's had a bright orange cast and now a pale blue cast. Otherwise, her school year is going well. She doesn't miss a beat with her Girl Scouts, tap dancing, and travel soccer. Alyssa had a lot of problems with me being blind and we've had lots of conversations and many tears have been shed, but the outcome I feel was a good one. She broke down and told me she never really meant to hurt my feelings and how much she loves me, and how she's going to try so hard to help me do things. Since then, she started making me coffee that she brings to my bed on the weekends and sometimes even before school. My tears of sadness turned to tears of joy when I realized she really does love me.
Things have been quieter around the house. Even though my children are seven years apart, there was always laughing or bickering going on at all times. Tyler has been off to college since mid-August at UW-Whitewater with his major remaining undecided. He loves school and has been studying hard, and as of mid-terms he had 2 As and 3 Bs. I'm starting to think that brain surgery really did something good for him. Ha ha. He plans to come home this weekend as he wants to surprise his sister and take her to Great America (not looking so good as of now due to our unfortunate weather forecast being cloudy and a high of mid-40s; they may need to pick a different outing). We attended the parent weekend at his school as a family several weekends ago and really enjoyed our day. Alyssa hung out with the dance team and got to perform at the football game halftime with the pom pom team. We went to half of a soccer game as well, and then to the local pub to eat. We offered to hang at the dorm but the boys didn't seem to want anything to do with that. We were quite surprised they actually vacuumed that morning, but nobody wanted to take out the garbage. How hard can it be to throw a bag down the chute? Hopefully Tyler will grow up a lot this year. I know he is already doing his laundry but that's only because he's run out of his clothes twice. He plays on an intramural soccer team and practices with the club. He plans to try out next year for the team. This year they only took two freshman so next year he'll have a better chance. I'm just glad he's happy. He appears so, which makes me a very happy mom.
Steve's been traveling a bit more with business and trade shows. He still manages to get Alyssa to her soccer games and practices, pay the bills, and keep up on the house. We're trying to work together to be more aware of the stress we each feel, because he is under constant stress to do it all for the family and doesn't get a break, and he feels responsible financially. He just feels like he has to keep it all together. I only have to be responsible for me, even though my life is bad. I rely on other people for things I need to do. So, we're trying to be more thoughtful and show more appreciation to each other and offer a word of thanks more often. It all sounds so easy on paper.
My family was here this past Sunday and they thought Steve appeared to be trying really hard to be a kinder person. He picked up our food and was much more outgoing and everything. They came to celebrate Alyssa's birthday and to help me out for the day, although there was little time. The good part was, by them coming here to my home, I think they realized by looking around the house how much help I could use. They saw paperwork that needs to get filed and I showed them my closet and how I have begun to organize it, and everyone again committed to wanting to come out and help again. My Aunt Winnie brought homemade food for our upcoming weekend with Tyler and Debbie brought me a bottle of holy water from the Vatican blessed by the new Pope. However, I accidentally drank a third of it thinking it was just a water bottle. Nooo! Now I'm blessed inside and out, I guess. She also got me a glass jar of water for health, which came from the holy land where sightings of the Virgin Mary took place, I think.
Besides all my medical fiascoes, I always manage to find time for fun. I went out with college friends including DiTy, Missy, Lori, Mindy, Carrie, Nancy, Darlene, Mary Jo, my Brookhaven neighbors, the two Sheilas and Sandy, and several others. I even arranged for a long weekend in Ann Arbor, MI. Suzanne was thoughtful enough to offer up her time for a whole weekend to attend the VHL conference, and when we weren't doing conference stuff we were out having fun. It was nice to meet some new people there as well as learn a lot of new information and treatment changes in the many affected areas of my disease. It seems everything I've done has changed now.
I have recently connected with a small group of visually impaired-to-blind women. It has been nice to have someone to talk to that can relate to what I've been going through. In addition, I joined a support group for disabled people in our area, yet most of these people have spinal cord injury or stroke paralysis. I have also met three other visually impaired people through the Center for Independent Living and have found it very helpful to talk with them.
As you well know, my biggest life saver has been Suzanne with her driving me to and from all my doctor appointments, etc., etc. I swear she's like an angel. Some days I even refer to her as Dr. Baumruk as she researches everything following my appointments. Who could ask for a better friend? She's even learning how to navigate the iPhone and iPad for the visually impaired for me. We truly spend a lot of time together. I wish we had more time to spend doing fun things instead of always going to a doctor.
Much thanks to my friend Sheila in Atlanta who spends many hours on the phone typing and editing my blog, and you know I have the gift of gab so it takes a lot of tweaking. I truly am lucky to be blessed by so many good friends.
This Friday I'm off to another fiasco for happy hour and Thai food with three blind women and a dog, which is so funny because we can't see each other or the menu. Cheers!
Regarding my eye, after 10-15 appointments over the past three months, I feel like I've been through a whirlwind of ups and downs. First and foremost, the worst problem is that I had found a new chemo eye injection that I was willing to try, so I went to see a retinal specialist at UofC for his opinion, and when he looked into my eye, he said "Oh my gosh, your eye has changed dramatically in the past nine months." He said my tumor is much larger and has partially detached my retina and lifted it up so that it no longer lays flat. Normally, a detached retina requires emergency surgery to repair as it works best to save vision when done quickly. Yet, due to the large size of my tumor and it pushing my retina up, I am not even a surgical candidate unless my tumor will shrink. His feeling on the chemo drug Eylea is that it would not shrink the tumor due to its size, but had I tried this when it was smaller nine months ago, I might have had better results. When I asked him what he would do if it were him, he told me to pray. I said no, really, seriously, and he said again, "I would pray. I'm going to contact several experts in the area but I really don't know if there is anything more we can do for you."
I am very disappointed because I knew my vision had been changing rapidly, and every time I questioned my usual doctor, Dr. Cohen, he stated everything looked the same and he never told me of the growth. Nothing I can do now; hindsight is 20/20.
One of the experts that the retinal specialist contacted at the University of Illinois, Dr. Mieler, I have now seen three times. He has not used the Eylea chemo on me as it is $1,800 per injection and not covered by my insurance for my diagnosis. Instead, he is using a similar chemo, which he injected into my eye. Now, I will wait four weeks and have a re-injection done on Nov. 30, and follow it with a laser treatment in hopes that it will start to shrink the tumor. He said he can't promise anything, but as long as I'm willing to try and since I have no vision to speak of, I have nothing to lose.
There is going to be a study at NIH that requires monthly trips to their facility for phase 1 trial treatments. I'm waiting for Dr. Chu to call me with more details and to decide whether or not I'm a candidate for this trial.
During this whole process, my glaucoma has gone absolutely out of control. A normal level is 8-15. A low level means your eye is soft and a high level means your eyeball is hard and can rupture. My numbers have been as low as 4 and as high as 61. 61 is one of the highest readings the doctor has ever seen and he thought I would require surgery in order to stabilize my pressure. Thankfully, we found the right cocktail of eye drops and pills and my pressure has been ranging between 18-30 lately. I am having this monitored every 1-2 weeks.
Regarding my kidney, I finally was able to get an MRI and ultrasound of my kidneys done in early August. As I was unable to receive contrast, my doctor met with a team of radiologists and a specialist and they feel that there has been little or no change in the last six months. However, I do have a change in my kidney function, which is causing them to focus on me more closely. My blood pressure has been extremely high, so they have me recording it three times per day, and the function per blood work continues to decrease. I feel I am more swollen in my hands, joints, and face as I retain more fluid due to this problem. I will have a follow-up MRI in January.
My most bothersome problem since July has been my skin and the pain associated with it. My skin had been for several years very thin and would rip like an elderly person's. This summer, many people began to notice a change in the color and leather-like appearance of my skin on my arm. I saw my dermatologist regarding this in mid-August and he, along with two other nephrologists, feels that this may now be a condition called "NSF" (nephrogenic systemic fibrosis). What does this mean? This is a condition that is very rare that is caused by receiving contrast for an MRI scan with poor kidney function. The toxins injected to help view in the MRI get trapped in the cells and cannot get out through your kidneys. Basically, you start to develop fibrin and collagen growths that are visible externally, yet they also internally damage your liver, heart, lungs, and cause them to become very sickened. My brother Steve had this condition and it caused him severe pain in his joints. When he died, he had heart issues and lung problems that they felt were related to this condition. On his autopsy, they determined that this was a significant cause of his death.
Some of the symptoms of NSF are blood clots of no apparent cause (I've had two), incredible itching or burning of the skin, bone pain especially in hips and arms, leather-like appearance of skin, and eventual restriction of movement of joints. This condition can rapidly progress or take years to progress. Whatever I had started in July on my arms and has now moved to my feet, ankles, calves, thighs, hands, back, and chest area. Thankfully, it does not go to your face. I am still waiting for a full diagnosis. I have seen two dermatologists, my internist, and the first of two rheumatologists. There is no blood test to diagnose this and there are only 400+ reported cases in the registry at Yale. If I do not have this condition, I'd like to know what I have. It's making me crazy.
Again today I returned to see my local dermatologist, who decided to take four further biopsies as he felt since August there has been a dramatic change in the appearance and spread of the skin condition. He encouraged me to see a rhumatologist ASAP to rule out any form of Lupus, as he said Lupus has a lot of similar symptoms as the NSF. Lupus is an autoimmune disorder where your body attacks itself, usually following an acute infection or illness. It definitely includes achiness, joint pain, swelling of hands, ankles and wrists, fatigue, fever of unknown origin, and skin rash that varies in appearance. This can be treated with steroids and topical medications, whereas NSF has no treatment other than a kidney transplant. Lupus can be diagnosed through a series of blood tests while NSF is diagnosed by ruling out everything else. If it's not Lupus, they think it might be NSF. Hopefully we're getting closer to an answer. Dr. Lahti prescribed me a few new cocktails to take for anti-itching because I felt I was going to lose my mind from that.
I still use my cane to navigate mostly through my home and at some local stores, yet I require much more training in this area. I have gotten lost walking from my front yard to my back yard with the cane. When in an open area, it is hard to tell where you are, and I nearly walked into a road once but was stopped by a tree branch in the face. It is very scary to know how easily I can get lost. It takes a lot of focus and concentration and counting of steps so I know about how far I am away from my starting point.
Regarding the mysteriously box from the State, I finally received it the first week in October and, sadly enough, it contained a machine that is no longer useful to me as my vision has changed so significantly for the worse. Thankfully, I am expecting a delivery in the next several weeks of a machine that will take a picture of any printed material I put underneath it and then it will have a Siri-like voice read it to me. I can't wait to get it. I'm so excited.
So what does my next month hold? More trips to the eye doctor, skin doctor, and round two of repairing my prolapse. I'm scheduled on Nov. 22 for a hysterectomy at Lutheran General Hospital with a one-night hospital stay. Hopefully this time there won't be a problem.
On the bright side, my daughter Alyssa turns 11 tomorrow, although in her mind she's already a teenager. We're postponing her birthday party as she's had a rough couple of months. She broke her right arm six weeks ago rollerblading and broke her left arm nine days ago playing soccer. At least she kicked that winning goal before she went down. She's been a good sport. Whoever thought there would be such a selection of colors to choose from -- she's had a bright orange cast and now a pale blue cast. Otherwise, her school year is going well. She doesn't miss a beat with her Girl Scouts, tap dancing, and travel soccer. Alyssa had a lot of problems with me being blind and we've had lots of conversations and many tears have been shed, but the outcome I feel was a good one. She broke down and told me she never really meant to hurt my feelings and how much she loves me, and how she's going to try so hard to help me do things. Since then, she started making me coffee that she brings to my bed on the weekends and sometimes even before school. My tears of sadness turned to tears of joy when I realized she really does love me.
Things have been quieter around the house. Even though my children are seven years apart, there was always laughing or bickering going on at all times. Tyler has been off to college since mid-August at UW-Whitewater with his major remaining undecided. He loves school and has been studying hard, and as of mid-terms he had 2 As and 3 Bs. I'm starting to think that brain surgery really did something good for him. Ha ha. He plans to come home this weekend as he wants to surprise his sister and take her to Great America (not looking so good as of now due to our unfortunate weather forecast being cloudy and a high of mid-40s; they may need to pick a different outing). We attended the parent weekend at his school as a family several weekends ago and really enjoyed our day. Alyssa hung out with the dance team and got to perform at the football game halftime with the pom pom team. We went to half of a soccer game as well, and then to the local pub to eat. We offered to hang at the dorm but the boys didn't seem to want anything to do with that. We were quite surprised they actually vacuumed that morning, but nobody wanted to take out the garbage. How hard can it be to throw a bag down the chute? Hopefully Tyler will grow up a lot this year. I know he is already doing his laundry but that's only because he's run out of his clothes twice. He plays on an intramural soccer team and practices with the club. He plans to try out next year for the team. This year they only took two freshman so next year he'll have a better chance. I'm just glad he's happy. He appears so, which makes me a very happy mom.
Steve's been traveling a bit more with business and trade shows. He still manages to get Alyssa to her soccer games and practices, pay the bills, and keep up on the house. We're trying to work together to be more aware of the stress we each feel, because he is under constant stress to do it all for the family and doesn't get a break, and he feels responsible financially. He just feels like he has to keep it all together. I only have to be responsible for me, even though my life is bad. I rely on other people for things I need to do. So, we're trying to be more thoughtful and show more appreciation to each other and offer a word of thanks more often. It all sounds so easy on paper.
My family was here this past Sunday and they thought Steve appeared to be trying really hard to be a kinder person. He picked up our food and was much more outgoing and everything. They came to celebrate Alyssa's birthday and to help me out for the day, although there was little time. The good part was, by them coming here to my home, I think they realized by looking around the house how much help I could use. They saw paperwork that needs to get filed and I showed them my closet and how I have begun to organize it, and everyone again committed to wanting to come out and help again. My Aunt Winnie brought homemade food for our upcoming weekend with Tyler and Debbie brought me a bottle of holy water from the Vatican blessed by the new Pope. However, I accidentally drank a third of it thinking it was just a water bottle. Nooo! Now I'm blessed inside and out, I guess. She also got me a glass jar of water for health, which came from the holy land where sightings of the Virgin Mary took place, I think.
Besides all my medical fiascoes, I always manage to find time for fun. I went out with college friends including DiTy, Missy, Lori, Mindy, Carrie, Nancy, Darlene, Mary Jo, my Brookhaven neighbors, the two Sheilas and Sandy, and several others. I even arranged for a long weekend in Ann Arbor, MI. Suzanne was thoughtful enough to offer up her time for a whole weekend to attend the VHL conference, and when we weren't doing conference stuff we were out having fun. It was nice to meet some new people there as well as learn a lot of new information and treatment changes in the many affected areas of my disease. It seems everything I've done has changed now.
I have recently connected with a small group of visually impaired-to-blind women. It has been nice to have someone to talk to that can relate to what I've been going through. In addition, I joined a support group for disabled people in our area, yet most of these people have spinal cord injury or stroke paralysis. I have also met three other visually impaired people through the Center for Independent Living and have found it very helpful to talk with them.
As you well know, my biggest life saver has been Suzanne with her driving me to and from all my doctor appointments, etc., etc. I swear she's like an angel. Some days I even refer to her as Dr. Baumruk as she researches everything following my appointments. Who could ask for a better friend? She's even learning how to navigate the iPhone and iPad for the visually impaired for me. We truly spend a lot of time together. I wish we had more time to spend doing fun things instead of always going to a doctor.
Much thanks to my friend Sheila in Atlanta who spends many hours on the phone typing and editing my blog, and you know I have the gift of gab so it takes a lot of tweaking. I truly am lucky to be blessed by so many good friends.
This Friday I'm off to another fiasco for happy hour and Thai food with three blind women and a dog, which is so funny because we can't see each other or the menu. Cheers!
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