The next month was a whirl wind of activity and doctors appointments. All the blood work continued to come back with low blood work counts confirming anemia, high levels of antibodies in my system, but the damage seemed to be confined to my blood and joints. My liver, kidneys, heart, brain seemed to be unaffected. Praise God!! This disease can attack anything at any moment and cause damage very quickly. My vital organs were still in good shape and that was a huge blessing. I could continue to work and live life as a normal woman with bad blood work and joint pain. The anemia affected every part of my life, but I was alive and well and thankful.
Immediately after the diagnosis, I began to have a plethora of symptoms. I know a flare is coming on when my left shoulder joint begins to ache. The ache is excruciating. You can’t move, turn, or get comfortable. I began to have Ibprofen by my side at all times. I also learned I have Rayneud’s disease which means my fingers turn purple at the first glimpse of cold or stress. I will blog about that craziness later. Soccer was clearly out of the picture now and I had to drop out of a team I signed up to play with. Working out became non existent as well. By the end of the day, I was exhausted and could easily sleep 12 hours a day and then take a nap later. (To be honest-I could always do this, so that was not weird.) I made an appointment to meet with my gynecologist to discuss about making babies.
The good news is: I have had to make adjustments to live with this disease, but I can live with it. It is hard working full time and feeling this level of fatigue that is brought on by stress, but I am able to do it. Odd things such as sun and hormones trigger the flares of disease activity, but I can modify my activites to accomodate.
I went back to the rheumatoidologist crazy nervous. I knew this day was either going to make me look like a fool when he stated that nothing was wrong or confirm what I believed about the arthritis. I did not want arthritis since I played soccer and was so active. I did mud runs, 5ks, a half marathon, scuba diving, and played indoor and outdoor soccer. I was active and planned to stay active for many more years. Arthritis would prevent me from doing many of those activities pain-free. I didn’t want it.
Good news! I did not have Rheumatoid arthritis. The bad news: “All your blood work, without a doubt, confirms you have Lupus.” I’m a girl that has grown to expect bad things to happen and hearing this did not shock me like it would have shocked many people. I didn’t even know what it was. I did not know how to react. The worst part was when the doctor said, “If you had arthritis you could have continued trying to get pregnant with no complications. Lupus is different.” He encouraged me to call my gynecologist and set up an appointment on what to do from here. He discouraged me from taking Clomid any longer. He gave me a variety of facts about the dangers of Lupus and heart defects, blood clots and danger to the mother giving birth. He later confirmed that a pregnancy with this blood work would be challenging, but twins or multiples could be deadly. He encouraged me to continue trying for children, but followed it with, “It’s a risk.”
Believe me when I say this visit was a bit overwhelming and quite a shock…to say the least!
Since he knew of my intentions to be pregnant, he chose not to medicate me since medications could be bad for a baby. He informed me that since my symptoms were mild then my form of the disease could also be mild, but he also mentioned my blood work was as bad as it gets. He took 8 more vials to run a few more tests…checking for damage in various places in my body. I scheduled an appointment to return the following week and left a little stunned but relieved to know WHY I wasn’t getting pregnant. I was also thankful that I never got pregnant before knowing my diagnosis. Strange how God works. He was looking out for me the whole time.
I called my parents first to break them the news. They were shocked. No one in our family has Lupus and the word in itself can be very scary. I left confused and curious because I still didn’t know what this meant for me, my family and for wanting to be a mom. Have no fear…when I got home…I googled it!!
The good news is: Lupus is a chronic disease, but no longer a terminal one. Many advancements have been made to live a long and healthy life. I have three friends that also have this disease, so it is comforting to hear from them about their ways of coping and thriving. I know I am not alone-but we need to find a cure.
I scheduled my appointment with the Rheumatoidologist convinced that I had Rheumatoid arthritis or major side effects from a medication. Part of me knew something was wrong the other part of me thought, “Am I overreacting?” I went in and explained my symptoms, but kept saying that this could all be nothing and that I could be perfectly normal. I repeatedly apologized if all my symptoms were just side effects of Clomid. After all that I said, he narrowed in on my neck rash that had been diagnosed as a nickel allergy. He asked me multiple questions about the rash. I explained that I came back from Mexico and I noticed it, it itched sometimes, it went away, but has since returned. I told him I took high doses of Predisone to get rid of it, but just recently it came back from wearing a necklace. I didn’t see his point.
He kept focusing on that rash and questioning if it was really nickel related. I told him that the Predisone cleared it up and I’ve since paid attention when I wear necklaces. He wasn’t convinced and took about eight vials of blood that day to test for various things. I left his office and thought, “My joint pain, fevers, weight loss and sickness meant nothing to him, but this stupid rash from a necklace got him all fired up?!” I was scheduled to return the next week to discuss the blood results. I left his office knowing nothing more than when I came in. He said it could be rheumatoid, but he threw out the L-word, too. He closed with, “It’s hard to say right now.”
The good news is: I had insurance and could see a specialist anytime I wanted knowing most of it was covered. I have had to paid over a thousand dollars in out of pocket costs due to these doctors, but I’m thankful that I have NOT had to pay the over six thousand dollars the insurance has covered. Considering, I have been paying over one hundred dollars every month for this coverage and never used it until now…I guess we’re even.
Prior to the Clomid, I had my first bad blood report that I have ever had. It was minor, but the report showed my levels of blood were slightly anemic. My doctor was not concerned, but I was because it was affecting my ability to finish a game of soccer. After three rounds of Clomid being unsuccessful and still feeling the fatigue of the anemia, that was enough for me to start being interested in seeing a doctor. At the time, I had no idea that something major was wrong, but I knew things were not right. Looking back, the diagnosis was beginning to make more sense. I scheduled an appointment with a rheumatoidologist in hopes to learn more about the joint pain, fevers, weight loss, and fatigue. After googling all my symptoms, I thought I had rheumatoid arthritis. I also questioned if all of these were just side effects from the fertility drug. I did not want a doctor to laugh me out of his office, but I also knew something was wrong and I could go longer wait to find out.
The good news is: the side effects paused me, but did not stop me. I was able to continue strong at work, at soccer, and at life. Most never knew I felt sick at all. I thank God that all of this was bearable and that He slowly led me to my diagnosis.
After a year of no babies, we went to my doctor to talk about options to help us conceive. She suggested Clomid (50 mg), not because I wasn’t ovulating, but because she thought it would help to make a healthier egg. All my stats showed that I was ovulating every month on a perfect 28 day cycle, but since I still wasn’t pregnant, it was worth a shot.
No, it wasn’t.
Clomid was not the right drug for me. I had a range of side effects from depression, irritability, fatigue, dry mouth etc. We tried this drug for three months just pushing through that a baby was worth it, but in the end we learned it stopped my cycle three times and did not assist us in being pregnant. After the third round, I refused to move up to a higher dose and we conceded that this assistance was not assisting at all. Clomid could be a great drug for many women, but it did not work for me.
The good news is: I’m grateful that I have never had a miscarriage. After trying so long, I don’t want to get my hopes up to be let down. I praise God for answering that prayer.
This whole journey began when my husband and I started trying to conceive. We were one of those couples that needed to grow in our marriage before we dared try to bring kids into the picture. We waited for five years of marriage before we took the first step to get off birth control. I thought the minute I stopped taking the pill…BAM…I would get pregnant. No such luck.
A year later and we were still trying. Two years later and we are not pregnant. Now is the time to accept we may never be.
I’ve chosen to blog about our journey because we have learned so much from looking back. I question what my blog would be like if I had been writing while on the journey. Now that we know all that we know it is different. We see where we are now versus where we had been. The newest posts to the blog will be centered around the adoption and you will take that journey with us. You will also be with us as we sort out the Lupus diagnosis and seek treatment for that and while we thank God that my body did not suffer what could have been a harsh pregnancy if I had gotten what I wanted…it is still hard to be told “no” but it might have saved my life.
The good new is: I have learned that we are not trying…we are trusting. God has a different plan for us.