I was officially diagnosed with Lupus and Fibromyalgia a few years ago, though looking back over my life, it didn't just develop! Throughout most of 2014-2016 I suffered from pain that was so bad that it pretty much limited my ability to do much. By that time I had 4 children, 3 under the age of 4! My pregnancies were horrible, I suffered from pain more than I should have throughout each of them and each one got even worse than the one before.
When I was 7 years old, I was diagnosed with Migraines. For being such a young child and suffering from these horrific events, I can imagine this is where my issues really started. By the time I was in middle school I was diagnosed with Psoriasis (mainly in my scalp, ears and neck). I do feel I was blessed to have it in a rather hidden place. The topical creams that were prescribed didn't even touch the breakouts though. It took having my wisdom teeth out at 15 and given Nivea Creme so that there was no scaring around my mouth that I discovered what truly helped more than anything else with my breakouts. I think because the lotion was such a thick creme that it took longer to fully soak in my skin which left my skin moisturized longer. Today I use Miracle Balm and it works even BETTER than the Nivea Creme did for me! It's a Miracle for sure! My migraines were treated with Imitrex shots. The worked wonders and that definitely kept my migraines from getting too bad, until I was taken off the shot and given the pill form. They are definitely junk. Excedrin Migraine personally worked better than the Imitrex pill at this point.
Also by Middle School, I was suffering from a lot of pain in my stomach area. Throughout tests and tests and more tests, they were unable to really find out what was going on. It really seems like from the early to mid 90's until now medical imaging and blood tests have come a long way. I am no stranger when it comes to different imaging tests and a feeling like I lost a gallon of blood because of having so much taken at one time. I literally felt like my arm was going to fall off a few times because it was so weak and numb.
Eventually with the blood tests done it came back with inflammation in my body which then lead to further imaging tests and they ended up telling me that I had inflammation in my spleen. My spleen? What is a spleen? What does it do? The spleen has multiple duties. The main duty of the spleen is that it acts as a filter for blood as part of the immune system. Red Blood Cells (RBC) are recycled in the spleen and platelets and White Blood Cells (WBC) are stored there. The spleen also helps to fight certain bacteria that causes pneumonia and meningitis.
RIGHT THERE! RIGHT THERE should have been a clue to my current diagnosis. For real why wasn't this diagnosed then? After my diagnosis I looked back over issues in my life and truly knew from there that I wasn't just diagnosed with a NEW thing in my life, this has been here for some time. I don't think Lupus or many autoimmune diseases were really "acknowledged" back then. They never were really an option of diagnosis... even without a definitive answer to give a patient, the I don't know answer was better than telling someone they had an autoimmune disease.
Never really knowing what was truly going on with me, I struggled on. I have suffered from Anemia from as far back in life as I can remember. Another sign that should have had the doctors thinking. Nothing helped it go back up. Taking Iron pills always just caused worse problems than good. Earlier this year I was scheduled several rounds of Iron infusions... didn't help. So what is really going on with my blood and iron levels?
I first got pregnant when I was 19. I ended up having an ectopic pregnant, a pregnancy that was implanted in my Fallopian tube. Due to the fact that once that embryo begins to grow it will eventually burst my tube and potentially kill me, I had to have that pregnancy removed. I got pregnant again when I was 23. This pregnancy actually wasn't that bad pain wise except with my lower back and sciatic nerve. I was pretty healthy throughout the pregnancy. My son wouldn't turn so I ended up having to have a scheduled c-section with him. This started my wonderful life of c-sections. He was born, healthy and happy!
During 2010, I was going through a lot of issues and stress. In December of that year I discovered I was pregnant. I wish I had known before then. I ended up having a miscarriage. I know Lupus can cause miscarriages and it's likely for someone with Lupus to have them. I just feel like if I had known sooner, I could have done something different and prevented the miscarriage. December 15, 2010, I had to have a D&E done due to the miscarriage. My doctor called it "spontaneous abortion". Abortion is NOT a word I USE! DO NOT call it that! One of the other doctors at the practice had a horrible "bedside manner". Pretty much doing an ultrasound and telling me that my baby was dead and making it feel like it was my fault that there was no heartbeat. Shortly after that I was going through awful pain and ended up doubled over bleeding non-stop and ultimately had to go to the Hospital for the procedure. Miscarriage #2.
After that I was so frightened to get pregnant again. I had a child, I was destined to apparently not have anymore. The summer of the following year I found out I was pregnant. This time I made sure to take time for myself and make sure I was as healthy as possible. Throughout the pregnancy though there were a lot of issues. Pain, cramping, throwing up all the time, it was horrible. My due date was originally February 26th. For whatever reason my doctors said it was now March 28th. My son was born March 14 by emergency c-section. Pre-eclampsia started setting in and so much was going on that thankfully they realized the first due date was right, this boy needed out. So I was far enough in between my two births that I could have had a natural birth, but due to the emergency, I had to have another c-section.
My baby was not given to me right away when I was taken back to my room from the O.R. Instead they told me that my baby was bagged because he had symptoms of a withdrawal baby. Are you kidding me? I have NEVER in my life touched any drugs!!! EVER! How dare you!? My aunt flipped out on the nurses, soon my baby was brought in to me and "de-bagged". Clearly their unnecessary, unauthorized test came back clean. NEVER once was I given an apology. Nurses that stay were rude, with the exception of maybe one or two. I had never had a worse hospital stay.
Later that year I became pregnant again. This pregnancy was just as bad with the pain, cramping and all that horrible stuff, I wish I knew was caused apparently by my Lupus. Everytime I went to the hospital no one knew what was causing anything. There was so much protein in my urine that they referred me to the nephrologist. The same kidney doctor I currently see. Funny how they did a lot of blood tests and one happened to diagnose me with Lupus. Never once was I told this UNTIL I started seeing her again in 2016 and seen notes about Positive Lupus results. Nice, right? 2013! My son was born August 20, 2013.
I was going through a lot that year with my mom's health and eventually she was put on hospice, not by my choice and I may get into this in another post but NOT by my choice and NOT by hers! She ended up passing away 3 days before Thanksgiving that year. The day after I found out I was pregnant again. Definitely not a way you want to spend the holiday season, with the loss of a parent 3 days before a holiday and having a viewing and funeral the day before. Thanksgiving is just not the same. I'm to the point of not caring.
This new pregnancy with the added depression and stress just felt like I was destined to fail during this one. Same crap as the last 2 pregnancies, a lot of hospital visits, still no answers. And once again with the due date change. I know my body, I know my body!!! They didn't care. I fought so bad with this one with all the pain I was in that I knew, I knew when I was due!!! How dare you tell me July 26th and then change it to August 24th. Really now? So I was eventually scheduled for an amniocentesis for August 4, 2014. I went in to have this procedure done and instead of having it done, I was going to have a baby instead. When they did an ultrasound, I was told my placenta looked aged. Like instead of 38-ish weeks I was really at like 41-42 weeks... Um REALLY now? I told you!!!! Well upon being checked, I was dilated about 4 and well we were going to go have this c-section because if not I was at risk because of how close my other 2 c-sections were. This would have been my 3rd in 2 1/2 years. My son was born August 4, 2014, 16 days before my last born. My 2 youngest are 11 1/2 months apart and they look the most alike!
Between the pain of these three pregnancies and the on going pain, numbness and sickness for the next 2 years... what was going on with me?
I finally was able to get in to see a doctor in June of 2016 and I was tested for what they thought was Lime's disease. Are you joking? Well apparently Lupus can cause a positive Lime's disease result. On top of that they told me I had fibromyalgia (the only reason why they thought I could be in so much pain). I was also referred to a rheumatologist which in August of that year officially diagnosed me with Lupus.
How does it take 20+ years of having symptoms of this to actually be diagnosed with this disease? I'm thankful that in the process of dealing with this all my life and not having the proper treatment, I didn't die. I just hope that I was diagnosed in time to be able to still live a long life. I mean I have children!!!
It's insane how many doctors you have to go through to actually get answers. I've had MRI's done in the process too over the past several years and even found out I had about 5 messed up discs that I'm going to have to live with. Nothing's going to help it! Nothing takes away my pain. Been on Gabapentin, Lyrica, narcotics, nothing helps. The fact that narcotics didn't help the pain, I stopped that as soon as I realized I'm still in pain after taking a couple doses. Done. I'm not a fan of that! At this point I am on Naproxen for pain that is all I have for pain. Doesn't usually help but it helps with some inflammation. My kidney doctor doesn't want me on it would me rather taken Tylenol. Why? That's going to only kill some other organs. Oh forgot to mention, I have also seen a gastro-doc due to Liver issues and my gallbladder and his diagnosis with that was to just keep my gallstones. Kidding me right?
During 2015-2016 I have also had a CT Scan of my chest/stomach in which is where they found the gallstones, the liver issue and also what looks like "holes" in the lower parts of my lungs. Nice!
Why can't there be an automatic fix for everything?
I love when doctors tell you that Lupus is nothing like cancer. TECHNICALLY, if you really think about it there are MANY similarities. The main on being that your body is attacking something... right? Cancer is "bad" antibodies and your good antibodies and immune system is trying to fight it off. WHEREAS, Lupus is your body pretty much fighting a war against itself! Both are deadly. Both make you feel horrible, both pretty much affect you in the same manner. Both can be treated with chemo, both can require transplants, surgeries, etc. So yea, Lupus is JUST AS SERIOUS as cancer! Trying to explain to my children that I have a deadly disease it's insane.