My name is Brenda and I created this site because I love stories. My husband often says to me that I "always have a story to tell." Perhaps that's because I'm a writer, but I also believe it's because I'm an observer. I pay close attention to the world around me. There's nothing I enjoy more than going on different sites and reading your stories as well. And that inspired me to share with you, not only my life story, which includes a long battle with a chronic illness, but also things that I love to do and create; ways that I can express myself and also reach out to others. And another, very important part of my story is a blog page that I've included called, "DAUGHTERS OF DEVOTION." This contains daily devotionals for women, written mostly by the Proverbs 31 Ministry, but will also include others. It is my hope and prayer that you enjoy and share right along with me because, like I said, I love to hear about YOU too! As we share our stories, we will come to realize that life isn't easy, but in the midst of everything, we somehow learn to find ways to express our creative side...the part that makes the "hard" a little bit easier. Little ways that we can reach out to others with
A JOYFUL WORD!
Let me give you more of a glimpse into my life. I am first and most importantly a daughter of the KING! Almighty God and Creator of the Universe! The Maker of EVERYTHING! Gardens, flowers, the sunshine, animals, trees, the ocean, calm breezes, majestic mountains...you get the idea. I am SO inspired by NATURE, which you will see throughout the site.
I also hold several other titles. I am a Pastor's wife. My husband is a Senior Pastor in Brooklyn Park, Minnesota. Yes, you read that right. MinneSNOW ta: where Winter is six months long. When we moved here, the "local folks" told us that there are two seasons: Winter and Road Construction. Wow, now there's a winning slogan! Fortunately, we have many appealing attractions, such as the world famous Mall of America. Shopping anyone? And being the nature-lover that I am, I can appreciate when I hear that many call it "God's Country" here. It certainly is beautiful with its abundance of lakes, pines, open fields, and many farms.
Continuing with my roles, I'm also a Mom to two amazing boys; one is married and is a Pastor, and he and my daughter-in-law live in South Dakota and just had their first baby. A boy! His name is Elliott. Yes, I'm a grandma! My other son graduated from college last May with two degrees, one in Child and Family Ministries and the other in Pastoral Leadership. He is currently in the process of seeking God for a ministry position.
I'm a writer (I have my BA in Communications) and I also have many hobbies. I enjoy drawing, photography, card-making, scrapbooking, reading, crocheting, gardening, walking, being outside, and playing with my puppy Molly. I also enjoy being involved at church when I can.
So I've told you a little bit about me and my family, but it isn't my purpose to tell the whole world about us ! I mean, I could go on for hours like I'm sure any Mom could, but I have an important STORY that I feel will help others who might be going through some of the same things that I am. You see, I have an autoimmune disease called LUPUS. I also have its "Cousin" called SJOGREN'S SYNDROME. For some people, these may sound completely unfamiliar; for others, maybe you know of someone who has one of these illnesses; and there are those of you reading who may be struggling right now with one or both of these, and maybe even additional illnesses. I am writing my STORY for anyone who will benefit from reading it. It has, and continues to be, a difficult journey, but I've learned a few things along the way and I hope that I can help others. I would also like to share with you some of the ways that I was able to find JOY as I stumbled along this unknown path.
What is LUPUS? (from the Lupus Foundation of America)
Lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body). Chronic means that the signs and symptoms tend to last longer than six weeks and often for many years.
In lupus, something goes wrong with your immune system, which is the part of the body that fights off viruses, bacteria, and germs ("foreign invaders," like the flu). Normally our immune system produces proteins called antibodies that protect the body from these invaders. Autoimmune means your immune system cannot tell the difference between these foreign invaders and your body’s healthy tissues ("auto" means "self") and creates autoantibodies that attack and destroy healthy tissue. These autoantibodies cause inflammation, pain, and damage in various parts of the body.
Lupus is also a disease of flares (the symptoms worsen and you feel ill) and remissions (the symptoms improve and you feel better).
After my first year of diagnosis, and being put on strong medications, I was feeling worse than I ever had. I was spending almost all of my life in bed. I knew something wasn't right. I knew that I needed to give the medications time to work and "sort themselves out" in my system," but I felt that a year was enough time. Clearly, either the Lupus was getting much worse at an alarming pace, or one of the medications was not working right for me. It wasn't until I got sick with a respiratory infection and had to be put on an antibiotic (in which case I had to temporarily go off one of my medications because of its immune-compromising qualities), that I finally realized what was going on. As soon as I came off of that medication I began to feel better, even with the respiratory infection! Just having that out of my system gave me relief. At least it seemed that way to me. Of course, with these things, it takes more than once to realize what is going on to know for sure. After several of these episodes, however, I knew that this was the case. When I discussed this with my doctor, unfortunately, she insisted this couldn't be true. She said this medication was not known to cause fatigue and some of the other symptoms I was struggling with. I relayed to her that as soon as I began the dosage on Monday, I was in bed until late Thursday each week. Then I told her how I felt when I was off the medication. She still disagreed with me. I told her that I could NOT continue taking this medication and I would need a prescription for something else. She saw that I was determined and reluctantly agreed. She put me on a new prescription and it has been so much better for me. This was my first experience (and lesson) on putting myself FIRST, as the patient. Because of this, and several other issues, my husband and I thought it was best to seek another doctor's opinion. That summer, we flew to the Mayo Clinic in Scottsdale, Arizona.
Back to Pittsburgh
As any patient would do with two very different opinions (and a lot of emotion and confusion), I went back home and started to do some research. My research led me almost nowhere. At that time, I couldn't find very much information on Sjogren's Syndrome, and the medical reports that I did find were beyond my understanding. The most I could get were a few "bullet points" about the illness from major medical sites. The two identifying symptoms are dry mouth and dry eyes, and, interestingly enough, many of the other symptoms are very similar to Lupus. I thought about the dryness aspect and some things "clicked" for me. Things from earlier on in my life that I've struggled with, like fighting with my contact lenses because of dry, scratchy eyes. I remember when I had to stop wearing contacts altogether in my early 20's because of several painful episodes and a trip to the hospital. Even the dry mouth aspect made me think a little because I'd been having some trouble swallowing and my speech has changed noticeably. It bothered me, but I was blaming everything on the medications at that point.
I kept going to the Lupus Center of Excellence in Pittsburgh, but I changed doctors and was blessed to get the best, Dr. Susan Manzi. She was actually the founder. I knew that I was in great hands! She read all my files and paperwork of everything I'd been through to that point and decided that since Lupus and Sjogren's are so closely related, but with Sjogren's having those specialized areas, I would need to actually see a specialist to determine if I did indeed have it. She would continue to be my doctor and treat me for Lupus, but she wanted me to get tested for Sjogren's. She said to me that, in the end, once all the testing was done, the "Label" doesn't really matter; they are both autoimmune diseases that need to be treated. I felt a little bit of relief with that. I think she could see that I was getting quite stressed at that point. When we asked her for a referral for a Sjogren's specialist, she said that the best in the nation is in Philadelphia. She wasn't sure if he was taking new patients, but she would do her best to help me get in. Great! Wait....what? Philadelphia?! That's a 4-hour drive from Pittsburgh (at least). I just nodded my head. Of course we were going.
We were living in Rochester, NY when my life took an unexpected turn, and I went from being an active, young Mom, to someone fighting for her own health, a JOURNEY that began in 2002 when I came down with a severe case of strep throat that was never properly diagnosed or treated. It was almost a month before I was given an antibiotic. In the meantime, without my knowing it, havoc started in my body. I began to deal with three severe symptoms, almost on a daily basis; these were: fever, fatigue, and joint pain. Some days were so bad that I could barely get out of bed. I went from one doctor to another and one specialist to another, with test after test. I was told that I had everything from mono to the flu to Chronic Fatigue Syndrome.
After several months, I was able to find a good rheumatologist who discovered two key things; one, that I was malnourished and had a poor immune system, and two, that certain blood levels led her to believe that I had the human version of the Parvo-Virus. This was a long-term virus that could last up to 2-3 years. This is the diagnosis I lived with for a long time, gaining a little relief at a very slow pace. There were times when I felt better than others, and definite periods when the fevers were gone. Over the next several years, I even felt that I had times of remission, although I never did feel quite like myself again.
In 2007 we were living just outside of Pittsburgh, PA and I began to experience some of the symptoms again, along with some new, disturbing symptoms. I had always suffered with migraines, but they had gotten considerably worse. Another symptom I noticed was that my feet began to turn purple in color and they were always cold. I tried to ignore it for awhile, but it began to worry me. That's when I went to the doctor and all the appointments started up again. Now though, the rheumatologist wanted me to go to a blood doctor and also get heart tests done because I ended up in the hospital twice, once with chest pains, the other time with stroke-like symptoms. It still continued to be a mystery and I was getting weary of all the tests and doctors.
In 2009, God led me to a top rheumatologist at the Lupus Center of Excellence in Pittsburgh who had come from the Mayo Clinic in Rochester, MN. She was very thorough with my history, all of my recent tests, a thorough exam while I was there, and a complete hour and a half of questions about everything I was experiencing. At the end, she diagnosed me with Lupus.
So finally, after all those years, I had a diagnosis. When I went in I thought I would be so thankful. Instead, I was devastated. I couldn't really explain it. I guess I felt "stuck." Before the appointment, there had always been the hope that whatever I had would go away. Instead, I was left to face the fact that I had a chronic illness. It took me a long time to wrap my mind around that. Little did I know there was more to come.
When you go to a place like the Mayo Clinic, you can usually plan to stay for at least a week and be scheduled to see several different doctors while you are there. For example, in the case of Lupus, my main doctor is a rheumatologist so that is the first one I saw when I arrived. From there, it was determined which other doctors I would need to see since this illness is one that can affect different systems of the body (as seen on the chart above). Along with the rheumatologist, I saw a neurologist (for migraine headaches), a gastroenterologist (for reflux and other issues), and a cardiologist (for chest pains).
After meeting with the rheumatologist, I was frustrated. We flew halfway across the United States for a top doctor in the field and I felt like she wasn't prepared. She spent time talking to me and scheduled tests for me during the week, but it seemed that she didn't know about any of my previous records, even though I sent them in advance. At the end of the week, after I had all my meetings and tests, I had one final visit with her so she could give me a diagnosis or conclusion. Here was what I came for-- my "second opinion." She did NOT think I had Lupus, but felt that I might have Sjogren's Syndrome. What? Never heard of it. So now what?
Off to Philadelphia . . .
Once again, God went before us. Dr. Vivino was NOT taking any new patients, just as Dr. Manzi had predicted, but the young, vibrant Assistant on the other end of the phone cheerfully offered to me that if I would take part in a research study that Dr. Vivino was doing for Sjogren's Syndrome, then I would be able to not only have an appointment with him, but also get all the tests I needed, a free night in a hotel, and would even get paid for taking part in the study! We thought about this and it didn't take too long to figure out that we had to do all of these things anyway. Okay, sign me up! (Of course, I carefully checked how and where my cells would be used for research first).
Now, let me be clear-- IT. WAS. HARD. Very hard. I'd had a lot of tests done medically by this point, but (and I'm not sure why this is) anything done in or near the face or head is extremely difficult. The lip biopsy was the hardest. I made it through everything though, feeling very bruised and battered. Of course, we had to wait for the results, which meant going back home and making a followup appointment. A long drive. A long wait.
Due to the nature of a research study, as well as life in church ministry, and add on to that my days of not feeling well enough to travel, it was several months before we made our way back to Philly and Dr. Vivino for my followup appointment. One thing about going to specialists however....it may take awhile to get there, but when you do, they take their time with you. I really appreciate that. Dr. Vivino explained everything very thoroughly to me (not that I understood it all), but he did his best. What he diagnosed is that I have a kind of "burned-out" Sjogren's, meaning that I've probably had it since childhood. He said that I only have a few salivary glands working in my mouth, explaining some of the issues I've been struggling with. Also, the dryness in my eyes is significant. He prescribed one new medication, wanted me to start using a special mouth rinse four times a day, and gave me a lot of samples of gum, hard candy, eye drops, and other things that would help me stay MOIST. He also wanted me to set up appointments with him every four months. And that was it.
What do I do now?
We went home and Dr. Manzi received my reports from Dr. Vivino and she felt that I should still see her every three months and go to see him as he suggested, every four months. She was still my main doctor treating me, and as we found out over time, Dr. Vivino treated me primarily for the moisture issues of my eyes and mouth. I still had other symptoms that had to be treated and even monitored. So there it was. Two illnesses. Two doctors. Well, many doctors, but two main doctors. I remember thinking, "How did life get like this?" (Story continued below)
Life for me now
As you already read, we are now living in Maple Grove, Minnesota. This meant finding new doctors all over again. And once again, God led us to a wonderful doctor right here in the city. She's kind, listens, and most importantly, believes me. Truly, this isn't easy to find in a doctor, unfortunately. I get monthly infusions to treat the Lupus, and most of the time they give me some relief for three of the four weeks. So thankful! Obviously I'm not still going to Philadelphia, but Dr. Vivino is still my doctor if something comes up. Dr. Grandits, my new rheumatologist is now writing all of my medications. I feel that my biggest battle from day to day is the Lupus fever and fatigue. These symptoms limit me more than anything else. The main thing I concentrate on now is making the most that I can of each new day. I still wonder at times "WHY?" but this isn't helpful. I can always see some good that has come from this. God still uses me; maybe not the way I originally thought He would, but that's okay. Sometimes we have to be willing to be used in a different way. His LIGHT will still shine through us if we let it!
oh, by the way, I still LOVE Arizona!
Q & A
from my Profile Page on
My Lupus Team
Online Support Group
Q: Most days I find myself...
A: Most days I start off pretty well. Mornings are usually best for me. On a "good" day, I usually have several hours to work with and get things done. After that, I take my shower, and then my "spoons" are used up! (Spoon Theory) I eat lunch and then take a nap (2 hours) The afternoon is usually low for me, with not much energy. Sometimes I get a little back in the evening, but I can't count on it. I go to bed by ten, but have trouble with sleep. These are my days, and no matter what I do, I can't seem to change them, so I've accepted the good hours that I do have.
Q: Given what I know now, I would recommend others...
A: I would recommend that others do research about Lupus when they are first diagnosed, not only the illness, but also the medications BEFORE they start taking them. Also, only begin ONE new medication at a time. I was given several to take right away, and before I knew it, I felt drugged and lifeless. It took a long time to know the difference between symptoms of the illness and side-effects of the medications. Very frustrating!
Q: My life has changed in this way...
A: My life has completely changed and that's been hard. I went from working part-time, being very active in my church and family, and being healthy and fit, to getting sick and starting the whole process of what became the diagnosis of Lupus and a lifetime of illness and limitations.
Q: When I'm having a bad day, I like to...
A: On a bad day, I listen to music (I really like Christmas music or Smooth Jazz), crochet if I'm able to sit up, and just try to take it easy on myself. I know that I will probably have a better day tomorrow.
LINKS I FOLLOW:
People with CHRONIC PAIN and ILLNESS want everyone in their lives to know these important things about them . . .
(For family members, friends, and others who are ill. You are ALL important to me!)
Thank you for caring enough to read this! :)