Lupus NewsLog Thrivers

"I do not allow myself to be overcome by hopelessness, no matter how tough the situation. I believe that if you just do your little bit without thinking of the bigness of what you stand against, if you turn to the enlargement of your own capacities, just that in itself creates new potential." Vandana Shiva, Activist and Author.

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In Sanskrit, there is a character which translates into obstacle or opportunity, depending on how it's read. Lupus can be the wolf that brings us down or our springboard to leap into life. Those who share their stories here will not accept defeat - they strive to thrive. This disease is so little-known that, without the power in their words, the wolf would strike in silence.They utilize their own challenges to contribute their hard-won wisdom and strengths to our community and to help others recreate their lives.
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Kris - Running With The Wolf
(Some of us try to outrun the wolf but Kris has faced him eye to eye, accepted him as her kindred spirit and runs alongside him. She runs life’s marathon with faith, hope and humor, encouraging us all to do the same.)

According to my internist it was in the spring of 1984 that I started complaining of having pain in my feet that just wouldn't go away. I had soreness and stiffness in other places. My doc started me on various NSAIDS which, of course, some were ok; some made me sick, some didn't work. Finally in the summer of 1985 I had so many different complaints, sun-sensitivity, hair falling out, a low grade temp for no apparent reason, more and more joint pain and this lovely red, lacy rash looking stuff all down the front of my legs that just would not go away. Dr. S stated then that she thought I had lupus and was going to do the panel of blood work, which, of course, came back negative. She repeated, she still thought I had lupus and would keep testing me periodically.

At this time I was 32, working full time as a psychiatric nurse in a state mental institution, divorced, and a single mother. I have suffered all my life from migraines so that wasn't a new thing. However, in 1988 I started having difficulties with my menses so, once again, Doc S. listened to all of my multiple complaints and how many days a month I was missing from work due to the migraines which coincided, of course, with my cycle, and how bad the cramps were, and sent me to a GYN who did a D&C.

Now, being one who HAD a high tolerance for pain, this was performed under a local and before the GYN got back to the room to discharge me, I had already taken out the IV, showered, dressed and was waiting for him! As he was walking down the hall, to leave, I yelled at him, "Can I go to the new galleria in Birmingham?" He said, "You are doing so well, you can do anything you feel like doing." So, I went off to the huge new place to shop until you drop.

In 1992, things had gotten to the point it was all I could do to go to work everyday. The minute I came home from work, I showered, put on pajamas and laid on the couch and slept until bedtime. It was a good thing by then my son was 16 and was a better cook than I and could take care of himself. I would drag to work and then do "my time" and drag home and the cycle would start over. This went on for about 3 months before my sister made me go back to the doctor.

My doctor sat down and I just burst out crying. She told me I was depressed and I just couldn't believe I was a psych nurse and didn't recognize my own symptoms. She told me she still thought I had lupus, although nothing would confirm or deny it. She then put me on Prozac which I have remained on to this day. It probably keeps me from becoming homicidal!

In 1994, I started having trouble with the menses again. Dr. S sent me to UAB Kirkland Clinic to see a specialist in November. Well, believe me, by May of 1995, I was sick and tired of being stuck for blood, sick of intravaginal ultrasounds, having all of these pelvic exams, and nothing showing anything! I was fed up. I told the nice young, good looking (picture Antonio Banderas) doctor, "Look, Doc, I am sick and tired of this. I will be 43 in September. My baby is 19 and is living in Wisconsin. I don't want another child. Can't we just do a one day laser hysterectomy and be through with this?" He agreed. Then I told him, if you find something that isn't supposed to be there, don't wake me up to talk about it, just remove it.

I went into the hospital on Thursday, May 15th for one day surgery. I only packed a suitcase because my sister insisted. I came out 8 days later because the Antonio Banderas look alike had found ovarian cancer. My CA-125 marker was always within the normal range and the intravaginal ultrasounds were always ok. He immediately called in the oncology team and, of course, the laser was no longer possible. I had gone into surgery at 11:00 am and I remember them waking me up at 5:30 pm and telling me I had cancer. My response? "Well, I guess that's nice. Someone has to have it."

The doctor's nurse had taken a shine to me and we had talked so much. When she found out what had taken place in surgery, she made reservations for me in the Camilla Wing of the hospital (huge private rooms with 5 star accommodations). It is kind of funny how when you are the patient, all of your nursing education goes right out of the window. When I woke up, my sister and grandmother were sitting there. I was sort of sick and they both jumped to get the basin. I could tell my grandmother had been crying.

The next thing I remember is opening my eyes to a roomful of white coats. They make rounds before breakfast at teaching hospitals. The head of oncology was there and explained everything to me in terms I could understand. He told me all of the biopsies around the ovaries had been negative. However, each ovary was about the size of a small baking potato but everything was self-contained. And how lucky I was. He said he would have to do some checking to see what the next step would be but I wasn't going anywhere for at least a week.

He returned and said I was in a gray area. He had checked with several other teaching cancer centers and that if I were his wife or daughter, he would tell me not to do chemo or radiation. So I didn't do either one. I was finally released to go home. Six weeks later, it hit me. I had cancer! Wow! Talk about falling apart and being so thankful and prayerful at the same time.

About the end of July I started throwing up and the only thing I could keep down was iced tea with lots of lemon. My sister and I drove to Great Lakes Naval Base to see my son graduate in the honor company. Well, I threw up all the way there. The area of my diaphragm was killing me. When I saw Kristopher, he said, "Mom, you look like death riding a biscuit." Never had heard that expression! We all went to lunch to celebrate and my ex-husband paid for lunch. Just my luck that all I could eat was a baked potato and a glass of iced tea with lemon!

On the way home from Chicago, my sister informed me, "I have listened to you throw up all the way up here and will listen to you until we get to Birmingham. Then I am going to take you back to UAB and put you out. I can't stand this much more. It is either that or I am going to kill you." She said it so calmly, I had to laugh. By this time, the pain was so much worse I was in full agreement with her.

We arrived at UAB ER at 1:30 pm. I was triaged and had a temp of 101 at that time. I wasn't seen until 6:00 pm and they couldn't figure out why my temp was 103. Told them, could it be that no one has given me any Tylenol? Well, because I checked in under Dr. Antonio Banderas's name, they kept thinking it had to do with the hysterectomy. I don't know how many times I was examined "down there" or how many times I told them my pain is here, pointing to my diaphragm area.

FINALLY, a young male intern listened to me. Someone brought me a 7-Up and a couple of Tylenol which I immediately threw up. I was admitted to the hospital. When I got to the room, I asked the nurse if I could PLEASE have a shower because of all of the pelvic exams I had just had and I would be really quick if she would take her time before she came to start the IV. Alien abductees have nothing on me except that my loss of time and stuff happened in a hospital!

Because it was a weekend, nothing could really be done until Monday. I was hooked up to two IVs to give me fluids and my temp was all over the place. The doctor came in early Sunday to check on me and found me in the recliner chair because I couldn’t lie down because of the pain. They FINALLY gave me something for pain and kept it coming so that I could get some rest. Of course, I was pretty much on nothing but ice for food.

After rounds were made on Monday morning, the doctor promised to find out what was wrong and why I was having pain. Then the nurse arrive with three HUGE cups of this awful concoction she wanted someone who has been nauseated and vomiting to drink so that I could go have a cat scan with contrast. Told her I would try. Talk about projectile!

Finally, after she realized there was no way I could get that awful stuff down, out came the nasal/gastric tube. Giving birth was easier than having that tube put up my nose and down into my stomach. As it went up the nose cartilage, I thought it was going into my brain. I gagged as it went down my throat. Finally, it was in place and I told them just to keep putting that stuff in and call CAT scan and get me down there fast. Finally all that was over and I came back and threw everything up.

Eventually, the doctor came to tell me they had found a pencil eraser-sized blood clot in my hepatic duct. An intern remembered from my records that I was being tested periodically for SLE, so they tested me and viola! I was way past positive. My first one was 1:15,352 speckled pattern. The doctor said the clot was APS or antiphospholipid syndrome. Ol' Wolfie had come to live with me.

Strange things happened. I’d reach for a glass of milk and would reach too far and make a mess or could not reach it correctly the first time. I would find a gallon of milk in the cabinet and a box of cereal in the refrigerator. Was I losing my mind? I didn't have the energy do the things I enjoyed doing. I couldn't stay outside in the sun. I was started on plaquenil but couldn't tell it was really doing anything and tried most of the NSAIDS. Some worked for awhile, others I couldn't take.

My symptoms got worse and worse. Finally I tried methotrexate but found I couldn't take it by mouth. However, I could take it by injection. I would run into the doctor's office every Friday morning and get it. But then I felt like I had been hit by a freight train over the weekend. Not much energy at all, but I continued to work full time. After about 4 years of the injections my liver enzymes started going up and I had to find something else.

Well, in 1999, Doc also said that I needed to retire on disability and get away from the stress of work because signs were showing up in my kidneys. That was June. In October when I returned, she asked how retirement was. I told her I hadn't retired and she chewed me up. I went back to work and put in my retirement papers. I officially retired the first day of December 1999 and I started the disability process that day.

Also Chu-Chu, my Himalayan cat, entered my life. He and I bonded on the couch for two weeks as I did little but cry for those two entire weeks. I didn't want to quit work. Chu, because of that month, became my baby. Now, I already had a little dog named Fudge that reminds you of Toto of the Wizard of Oz. So, they learned to adjust to each other and my sister adjusted to the cat and we lived in harmony, pretty much. I wasn't able to live alone because I started falling and my sister and I had already combined homes so that was one less worry.

Also in 1999, I met a lupus friend from an on-line group face-to-face. We had been chatting for a couple of years and she was very sick and had to have some type of experimental surgery and I wanted to see her before she had the surgery. My sister and I are huge fans of the music group, Alabama and went to Ohio to see the band and then went to the northeastern corner to meet Nisey. Something really clicked and she filled a void in my heart that I didn't even realize was there. She is now like a daughter to me. In fact, I call her my Yankee Daughter and she calls me her Southern Mom. She has a heart as big as Texas.

As a single mother, she had adopted three girls: one has lupus nephritis; one was neglected and abused; and one was a crack baby that no one wanted. Nisey took them all in stride. Then she married and they had a surrogate son and found she was 7 months pregnant with another girl. Later they found out that the second daughter had a twin brother in foster care who is now living with them. Not long ago, a teenage girl was placed in the home for foster care until after the hearing and will be staying on there. As I've said, her heart is as big as Texas. She and her husband have said that when I get to where I need to go to the nursing home, they are going to take me to their home. I love her just like a daughter.

Chu had to go for a check up and shots about a year later (and I am still waiting to be approved for disability, turned down once) and my vet had 5 little Siamese kittens and was trying to find homes for them. I, of course, wanted one, but kept looking at my sister. Finally, she said, "Doc, just go get us a box to take him home in." Enter Ching-Ching. Ching was actually named by my grandmother. He has chocolate markings and a black mask on his face and the bluest, clearest eyes. He is very shy and doesn't make the usual Siamese noise. Actually Chu is our talker. If I am not home, he calls "MOM” and talks a lot. When Grandmother was so sick I took him over there and she told me that she now understood what I meant when I said that Chu is a talker.

About 18 months ago I started seeing a rheumatologist whose specialist is lupus. I have been so fortunate with my doctors. Doc S.'s second degree is pediatrics rheumatology and when she didn't know what to do, would send me to Birmingham to see a specialist there because I refused to see the only rheumy here in town. When she sent me to the new doctor, I asked if she was trying to get rid of me. However, the new doctor is just wonderful. Sometimes it is sort of hard to see him, but he doesn't complain about weight gain! Then he referred me to a pain management doctor that has been absolutely wonderful. She introduced me to a muscle relaxer that has really cut down on my need for so much pain medication. She really talks to you and listens. After some of the nightmare stories I have heard about doctors, I know that I am very blessed.

The only thing my internist and I have ever disagreed on, besides my retirement, is my migraines and the lupus headache. I have taken in Dr. Daniel Wallace's book, but she doesn't seem to think they exist. I know my migraines and I know the new headache has to be the lupus headache that he refers to in his book. However, she has never told me that anything is just in my head, which is an attitude that so many others have had to go through.

Currently I am taking CellCept for the lupus and my titer is now down to 1:360. At first I questioned the choice of medications. However, since it is for organ rejection and my body is rejecting itself, it makes perfect sense if you think about it. I still have days that I just can't go. I still go from one flare straight into another one, sometimes there is not a break in between, sometimes I would cry, except that I can't due to the Sjogren's and there is nothing worse than an old ugly face without the tears!

One way I cope with having lupus is to picture the majestic wolf. When I am feeling really lousy, I say I am running with the wolf and call myself a wolfrunner. It is so much easier to deal with an animal than an illness or disorder. Of course, there is always non-ceasing praying, counting my blessings for what I can do and for what I have, lots of heat, a tens unit, vibration, imagery, and meditation. And, of course, my critters. Chu usually knows before I do when I am flaring. But, honestly, the best things are laughter and chocolate!

The newest addition to the household is a 3 month old cockatiel named Kokopelli which we shortened to Pelli. He is just a wonderful creature. He has already bonded with me. When I am here at the computer, I move his cage over here and he sits in the corner closest to me and chatters and whistles. Currently, he is sleeping. I think the clicking of the keys puts him to sleep. I keep saying simple phrases over and over to him so I hope he starts talking. He has bonded with me so I guess I am his "mama". Kristopher had him out last night and Pelli soared and flapped from him until he got to me and then he clicked and loved against me and then found my natural stone amethyst bracelet that he so loves.

In 2002, my sister and I went out west to New Mexico and about dusk on one of the many roads we were on, a wolf ran across in front of the car and just sat down on the side of the road. I made my sister stop the car. The wolf and I were staring at each other for a good 5 minutes before my sister said we had to go. I was just so awestruck by that sighting.

I know that eventually I am going to lose this race, but I am going to give it my best shot. A doctor who is married to a friend of mine gave me a compliment one day not too long ago. He told me, "You know, Kris, you are the second person I know who has managed to live longer than 5 years with lupus as bad as you have it. You are doing well."

Laughter is something that as wolfrunners we don't do often enough. However, looking for the laughter is something that we must train ourselves to do because laughter raises the endorphins that lower the pain threshold and just plain makes you feel better. For instance, this morning I thought my eyesight was getting worse. Well, come to find out, I had put on my sister's old pair of glasses instead of my own. I had even bought lens cleaning spray while I was at Wal-Mart to see if that would help! YOU JUST HAVE TO LAUGH--it is much better than crying.

The other thing about being a wolfrunner is you can NEVER give up hope. There are medical marvels everyday. Someday they will find a cure for this. It may not be in my lifetime, but there will be a cure.

Always remember it is better to have the information and not need it than to need the information and not have it. The more information you have about your illness, the easier it is to cope with your symptoms.

Seek out other victims of the wolf. You don't have to go through this alone. Join a group on line. Go to a group in your area. Just don't try to run this race alone!

Don't forget to laugh!

©2004 Kris Kutz

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