Sunday, February 26, 2012
I'm finding that things happen for a reason
As for Christmas, everyone had a wonderful time even though it was very different than I had planned. I got very sick prior to Christmas and was unable to celebrate with my family or go to church or do our traditional Christmas celebration with the relatives. Steve and Alyssa did go, though. Tyler stayed home and took care of me. We all enjoyed our gifts. GiveForward (http://www.giveforward.com/wecareforkim) sent us a box containing a gift for everyone in the family -- things like a scooter, video game, and a Live Love Laugh cross, which I love.
We had a wonderful New Year's Eve with my great neighbors. As for New Year's resolutions, I decided I want to eat more nutritiously and focus more on a healthier lifestyle. In addition, one of my neighbors asked me to join a Bible study group so I committed to starting a more spiritual life as well.
As for my health, I did have my brain and spinal MRI scans and will finally be seeing the neurosurgeon tomorrow. I'd been waiting for nearly six months. I don't anticipate anything major but I do know I have some pinched nerve or disc pinching causing me to have pain in my upper arms, like deep bone pain. Hopefully there's some sort of steroid injection I can take to relieve this pressure because I refuse to have any more surgery after my last bout with infections.
In addition, I saw the eye doctor, Jack Cohen, who has still no answers for me at all. He said he plans to go to a conference this spring to see if there is anything new on the forefront to treat optic nerve tumors. As for now, in all the research I've done, everything has failed or caused further vision problems or blindness. The scariest thing is my tumor continues to grow at a slow rate, yet my vision seems to be worsening. I see very grainy, like Seurat's paintings with dots. All my colors look the same, which drives me crazy. As you lose your vision, it's irreparable according to the doctors. My biggest fear is blindness.
I need to make a trip to the vision specialist to get another pair of stronger-magnification prescription glasses. Most of you use readers like 1.5 or 2.0, but I'm up to 8.0. In addition to the 8.0s, I still use a handheld magnifier to further assist in reading print. I can't stand it, although I do have to count my blessings that technology has made available the Mac computer and the Acrobat (a machine that blows up my print). Without these I would be lost from seeing any print materials.
Besides having bad vision, I get less light in, and the winter, even though it hasn't been snowy, really seems to affect my mood. Whether it be the shorter days with more darkness, or the days are darker and drearier, I feel that this year I've dropped off the face of the earth and haven't talked to anybody for ages. It's been a very depressing time and I'm sorry for not reaching out to people in the past few months, but I haven't connected with anyone really. Hopefully spring and the sunnier days ahead will help.
Still, my greatest joy is going to the movies with a big screen, and I've been listening to many books on tape as I've always been an avid reader.
In January, I noticed an unusual skin spot on my right calf, which turned out to be squamous cell, and I had that removed with Mohs surgery. In addition, I did blue-light treatment on some dry, precancerous areas on my face, and now my skin looks awesome. At my followup appointment, my doctor said she wants me to do the treatment on precancerous areas on my arms and chest too, as it worked so well on my face. Although it's painful, it's worth the result. I plan to take care of this before spring.
As you can see, January was a very busy, stressful month, but the biggest stress was when Steve lost his job mid-January. The worst of this is not just financial, but it is medically burdensome as well from an insurance standpoint. We took out a Cobra plan from the company and the premiums for coverage are very high, so in addition I tried to apply for Medicare. I was denied because open enrollment ended January 1st and the next enrollment is June 1st. We missed the cut-off by two weeks and have been arguing with the Springfield Medicare office because this was a life-changing event that occurred, and we feel it should be reevaluated. So far, all we've heard is "No." The downside is, now that I've applied, they consider Medicare my primary insurance (which makes no sense to me since I was denied) and I have to pay out-of-pocket unless I'm hospitalized. Doesn't this seem crazy?
So, thank goodness for all of the donations from the GiveForward fundraiser (http://www.giveforward.com/wecareforkim), which ends on March 17. Thank you to all of you who have donated and shared the link with your friends. Say your prayers that Steve finds employment soon so that this whole issue will be resolved. Anybody who has connections in the medical sales field, please let us know.
Prior to our insurance ending on January 31, I was unable to get my appointment in for a followup MRI to my kidney or a visit to a transplant coordinator. Hopefully, if Medicare reconsiders, I will do these visits sooner rather than later, because MRIs cost $3,000-4,000.
On the bright side, at the end of January we had our second annual DZ reunion. It was great to get out and enjoy the night with all my close friends and "cheerleading squad," including DiTy, Lori, Carrie, Karen, Nancy A., Nancy T., Patti and all the others who attended.
I haven't been doing so well with my nutritional eating, but on the spiritual side of life, things have been very rewarding. I just completed a six-week Bible study and start another six-week session this Wednesday. I met a wonderful group of women who are also new to studying the Bible. Besides learning much, I have found this to be a very peaceful and meaningful time. This past weekend I attended a Women in Christ spa retreat in Lake Forest. It was a very wonderful experience. My new friend Gail, one of the Bible class facilitators, says nothing happens by chance with God; when you pray and ask Him for help, He really does answer your prayers. He will work through you in your life and what you do, and you sometimes have to look outside the box for the answers. Thank you Gail for your friendship, prayers and a wonderful weekend. In addition, Gail plans to hook me up with some miracle healers she knows.
Since January, I have been meeting people who I believe I was truly meant to cross paths with. Not only have I been able to help them with their medical crises, but I have found that it has been rewarding to be able to help others again as the nurse in me has been dormant for years. One such girl has lymphoma of the eyes and we plan to somehow work together to support others going through similar circumstances, as the doctors rarely give you the right resources, e.g. transportation, social security benefits, websites, clinical trials, support groups, etc. As for now, it is just an idea, but I can see this turning into something as a sort of web-based resource for physician referrals. Maybe this is why I've had these trials, because maybe this is my true calling.
As for the kids, Tyler made the Honor Roll last semester and now we have a sticker for the car. He's still on indoor travel soccer three days a week. Alyssa does Brownies, jazz, tap and basketball, and she does very well in school as well. It seems like Steve is working harder looking for a job than he did when he had a job. Rather than the usual stay-home for spring break, Steve and Tyler will be traveling for several days to look at colleges with Tyler's friend. Hopefully this will get Tyler more excited about his future, because right now he has no interest and doesn't know what he wants to do when he grows up. As for me, I'm looking forward to watching the Oscars tonight at my neighbor's annual Red Carpet Night.
Wishing you all the best in your lives and spring break travels. I'll try to be a better friend and hope to see you all more often. At least I didn't wait so long to post this time.
Wednesday, December 21, 2011
Is 50 the new 30? Sometimes it feels like the new 80.
In addition, I am scheduled for another round of MRIs to look at my brain and cervical spine. My doctor seems to feel that possibly something is laying dormant since my last major surgery and all the infections that followed. If those scans provide no answers, he would like to look at my kidney and liver to see if there is any sign of metastasis. My internist feels that you can get temperatures and unusual labs when you have cancer either growing or moving in your body. Say your prayers and cross your fingers this is not the case. This is another reason I am opting to wait until after the holidays to get the MRI scans down. I'll get them done on Dec. 30 and I should know shortly after the new year the results.
I'm still waiting for an appointment to meet with the transplant coordinator at Northwestern. I spoke with my brother Jeff, who has also received a kidney transplant. Four years ago when he met with their transplant team, he was told you cannot go directly to a transplant process. You must do at least a month of dialysis. He searched four other hospitals around the country who also told him the same. He finally ended up doing his transplant in Colorado, where they would do it with a pre-arranged donor. Hopefully things have changed in the last four years as my doctor doesn't feel I can tolerate the dialysis process.
We'll also plan to have my skin cancer checked, in case that could possibly cause white blood counts to increase and the symptoms I am experiencing. Back to the blood results of Dec. 7, when my white count had gone from 21,000 down to 12,000, I was also found to be deficient in Vitamin D. The idea that the pituitary gland was causing the problem was proven wrong. A Vitamin D deficiency can cause you to feel weak, achy, have difficulty with concentrating, cause headaches, and basically seasonal affective disorder systems. Living in the Midwest in the winter of doom and gloom, I am now taking a Vitamin D supplement.
On a happier (?) note, I recently celebrated my 50th (half-century mark) birthday and I am feeling very old. Celebrating, on the other hand, has been great fun and I can really get used to that lifestyle. Prior to my birthday, I met with 12 of my sorority sisters at Maggiano's and we went into an Italian food coma. The dinner, drinks and great company made for a wonderful evening. Thank you, girls, for all my wonderful gifts. I wear the necklace almost daily and get compliments all the time.
In addition, I was thoroughly surprised by a large group of neighbors and friends at our supposed holiday book club-turned surprise Happy 50th. Another great evening of my favorite snacketizers, drinks, and a delicious assortment of cake pops. Everyone shared their thoughts, jokes, and sayings on aging (e.g. "I'd rather give up sex than lose my glasses") and games you play when you get old (e.g. "Hide and go pee"). Again I was treated to many wonderful gifts, jewelry and gift cards, but most importantly, the love I felt from all my close friends was so nice. A big thank you to Suzanne and her helpers Angela, Karin, Brenda and Corrine.
It has been great seeing everybody at all of our holiday parties and gatherings this holiday season. I just found out that my friend Sheila, who I am dictating this to currently, will be in town for a few days. In addition to getting together with her, on Christmas Eve we'll be going to church and then starting our Christmas tradition. It's 24+ hours spent with the same group of people, beginning with Christmas Eve when we have a formal dinner with my cousins and my aunts and uncles. We do a gift exchange with names we have drawn for the kids and basically everybody visits and gets excited for Santa's arrival. We leave about 10:00, set up our own Christmas, go to bed, wake up at the crack of dawn, open gifts, and then in the early afternoon we load up our favorite toys and dress casual for yet another day of drinking, games, and fun with our relatives. Crazy enough, last year, due to the snow, it turned into a three-day ordeal. We love our family, especially with the wine and spirits.
We can be thankful this year that my Aunt Winnie is now cancer-free as she completed her last dose of radiation one week ago. Now we have to pray that my Aunt Mary will get relief from her chronic low back pain and sciatica.
As for New Years Eve, we are going to our neighbors Ron and Angela's for their annual Eat, Drink, Be Merry and Play Games party in our subdivision. No kids (he he). It should be fun. Hopefully we're headed in the right direction for a more promising new year.
My Delta Zeta friend, DiTy and her extremely sensitive, thoughtful, caring husband Jim, with support from Lori P., Jeryl and Julie F., Carrie, Patty and Nancy, Ellen, Jane, Missy and Denise (the birthday group), presented me with the gift of GiveForward. It is a remarkable website (http://www.giveforward.com/wecareforkim) where people I know, as well as people I've never met, have shared messages, their generous donations, and prayers toward my family and I. It is the most overwhelming experience I've ever felt, as I have been part of a fundraisers in the past, but this is totally different. This is a truly wonderful group of people wanting to do good for others in the world. It is amazing and brings me to tears when I read their notes and see the generous amounts that we have already achieved in just 10 days time.
In addition, it was brought to my attention last night by Jim that the GiveForward organization has chosen my blog and story as their favorite this season. They have decided to take money that they have raised (remember, they are a company that makes 7% profit by people who do fundraisers) and make our Christmas holiday more special. I'm not sure what they plan to send but Jim said they were hoping to send gifts for my two kids. How touching is that? I didn't think companies did this kind of stuff.
I really do appreciate everything that everybody has done. I know everybody is very busy at this time of year, and in this tough economy I am so touched that you have chosen me to receive your blessings. THANK YOU and GOD BLESS YOU ALL. May you all have a Merry Christmas and Happy New Year.
p.s. I still hope to send Christmas cards at some point. I'm off now to get the rest of my gifts wrapped.
Thursday, December 8, 2011
"It's better to look good than to feel good."
Saturday, May 7, 2011
Winter blues and a brighter spring
Sorry I have not been able to post in such a long time. I was hoping that my life would hold no medical surprises for me after the new year, but unfortunately several things popped up...
In January I saw a rheumatologist who did a very thorough workup looking to see if she had any ideas as to where all my bone pain and fatigue originated from. After almost 20 tubes of blood were drawn, I was found to be borderline lupus and everything else came back negative. She wanted to watch my labs for lupus and was not convinced that was correct, yet I have nearly every symptom of this condition. Until my level goes up, she chose to diagnose me as having fibromyalgia and/or signs of clinical depression. Ha ha ha. As much as I like this physician, Steve and I as well as many of my friends do not feel that her final diagnosis is right. Fibromyalgia seems to be diagnosed on anyone they can't find a real diagnosis for and I have no symptoms of it -- no trigger points of pain. In addition, I tried the medication that treats this and was absolutely no better. I'm sure there is some depression in there as I have some SAD (seasonal) issues as well as a much changed lifestyle over these last few years. The dark dreary days don't help anyone's mood, but when you don't get light in your eyes it makes things even drearier. She looked at my skin and felt it warranted another trip to the dermatologist as she had never seen skin conditions like mine before, and wondered if it was some sort of pain-related syndrome.
After seeing the skin doctor in February, he knows of no syndrome related to pain and skin, yet found an area on my hand (an unhealed scab). After a biopsy, it came back positive for squamous cell skin cancer. So, I was scheduled for Mohs surgery later in the month.
While waiting for that, I saw my eye doctor who noticed some changes on the tumors of the retina and performed laser surgery to treat that area. Unfortunately, this is going to cause more blind spots.
Mohs surgery was simple. (For those of you not familiar with Mohs, it's an outpatient procedure where multiple layers of skin are removed, one at a time, until there are no inflammatory or cancer cells present. The reason it's so lengthy is because you have to wait an hour between each removal for the lab results.) After eight hours of Mohs surgery, the only disappointing part was ending up with a 2.5 inch incision on my hand and it went very deep, all the way to the tendon. A biopsy was taken of a suspicious area on my left shoulder. This biopsy came back as basal cell.
Things were going well until Day 10 after Mohs surgery when I woke up and found my hand red, swollen, painful, and double in size. It was a Sunday and I therefore called my doctor at home. He phoned in an RX as he felt it was an infection and said if things worsened or stayed the same, to come to the office in the morning. As my luck would have it, the next day I woke up and my arm was 3-4 times its normal size, all the way up to my forearm. After taking a look at it, the doctor recommended a direct admission to Northwestern Memorial for further treatment. My lovely friend Darlene took me to the hospital. Steve was leaving for the airport for business but the doctor told him to cancel his flight/trip. In the meantime, Darlene drove me straight to Northwestern and stayed with me until 10pm that night, and Steve came home and got the kids situated. Needless to say, this was Valentine's day. So Darlene and I both sent heart-shaped pizzas to our families to celebrate without us.
While they were home enjoying, Darlene and I literally had nothing to eat as doctors were running in and out from every specialty. After 12 needle sticks they finally got my IV started and labs drawn. I was told I had a staph infection as well as several other bacterial infections which required IV antibiotics. It looked like I'd be camping out for at least 3-4 nights at the hospital again. Waah... This time, they put a picc line in on the following day, rather than waiting until discharge. Luckily, I did not have what they all feared, compartment syndrome, as it would have caused me to have permanent loss of a part of my arm. They made me a mobilizing cast which totally made it less painful. After two days the swelling significantly went down. It took at least an additional month before returning to almost normal.
Wishful thinking, is it almost spring yet?
In March, I remained on antibiotics for the staph and other infections for another two weeks at home. I had a relatively normal month yet still continued with bone pain and still had fatigue. I spoke with the rheumatologist who put me on an antidepressant, which I took myself off of one week later as it made me shaky and I had difficulty sleeping. So I just figured I may as well get used to the pain and fatigue and try to move on with my life. I schedule little outings with days in between, and do projects around the house with frequent breaks until they can figure out a better diagnosis.
My kids were very excited for spring break the end of March, yet I overdid it and started getting sick again. The whole week I had a fever, bladder infection, headaches, and increased fatigue. After a week feeling like this and my antibiotics not helping, I took a trip to the E.R. where they said I was on my way to being septic again like last August, as I was not on enough antibiotics. Again, thank you Darlene for coming to my rescue and taking me to the hospital and again spending the evening with me. Steve cut his trip short and came back the following morning.
I hurt my ankle April 8th while walking my dog on our first nice spring day. I twisted it and thought it was just sprained. After several weeks of limping and swelling of my ankle and calf area, I decided to call my favorite foot doctor, Dr. Weil. I just saw him on May 6 and he diagnosed me with a torn achilles tendon. I'm scheduled for an MRI Monday morning to determine if it's a full or partial tear and to determine the treatment. As for now I'm back in my lovely boot.
In addition, in April, I revisited the eye doctor, Dr. Cohen, who had wanted me to return several times for recurrent laser surgery, yet I was unable to go due to being in the hospital. Thankfully, this was a good thing and the retinal tumor area appeared to have responded well to the initial laser and was unchanged. Unfortunately, though, the tumor on the optic nerve is again somewhat larger and there is no treatment still for this. He said he was going to do a search and had some upcoming conferences to see if there was anything in the works for a systemic drug that may stop vascular tumors and hopefully even shrink them.
Then I had Mohs surgery on my left shoulder. Ten days later I had my sutures removed and I'm happy to report I had no issues with infection this time around. The recent MRI of my ankle showed a split tear of my tendon, which is a very rare condition that does not require surgery. I started physical therapy and will continue to wear the boot for at least another six weeks. I see the eye doctor tomorrow and get a tooth crowned on Tuesday.
On a happier note, during the month of March, we decided as a family it's been way too long since we've taken a trip together (three years in June). So, we are all headed to Disney World in Orlando for a week of sun and fun and hopefully no limping. The kids are looking forward to school getting out June 2.
Alyssa made her First Communion on Saturday, May 14. Aunt Jan and Uncle Jim from Texas flew up to attend a wake and funeral and while they were in town we ended up throwing a last-minute Communion party. Alyssa was so excited; she got to carry the gifts up at the church and looked like a little bride. I will post pictures on this site when I get them back.
The following day we spent with family. Unfortuately, Tyler was unable to attend due to a travel soccer game. On a positive note he scored a goal and got an assist, but he broke his toe in the process. It was great to see the family again since I have not seen everyone since Christmas. Thank you Stacy for going that extra 40+ miles to pick me up, and Winnie and Lou for bringing me home. Next, we look forward to Alyssa's tap and hip hop recitals June 4 and 5. We bon voyage June 6 for Orlando. And, having both kids heavily involved in soccer keeps us busy. In addition to Tyler playing for the travel team, the Magic, Alyssa plays rec soccer.
I have learned my lesson on waiting so long between posts, as more than five months have elapsed since my last one. I promise you all this won't happen again. Please keep in touch and I hope to see you all this summer. Hope you enjoy the end of the school year and are looking forward to summer.
Friday, December 31, 2010
Hoping 2011 brings happy, healthy New Year to all


Tuesday, December 7, 2010
Prayers needed...
I had a full panel of lab work. The only things that could point to any problems were that my white count is high and my vitamin D level is low. Although the doctor doesn't believe the cause of my issues is the vitamin D deficiency, I have decided to take a supplement.
After discussing everything with my doctor, he decided the next step would be to see if the renal cell has moved out of the kidney to other areas, such as my lungs. I will be having MRI's of my abdomen and chest this Thursday and will get results when I see the doctor early next week. If these tests don't show anything, the next step will be a body scan.
Please say your prayers that things remain unchanged in my kidney and that is not the source of my problem.
I've been staying inside out of the cold and enjoying my Christmas decorations. It's been a nice change of scenery! Like everyone else, I am busy trying to prepare for the holiday. I was excited to learn that my sister, Robin, and her family will be driving in from Pennsylvania to spend the holiday with us! She will be here from the 21st - 28th. We are looking forward to spending time together without there being a medical reason for the visit...
On September 2nd, Steve and I celebrated our 20th Wedding Anniversary. As our belated celebration, we went into the city this weekend to see the musical, Wicked! We brought the kids with us & everyone loved it. Because of my vision loss, I was able to sit in the 5th row and could see really well.
