It's been almost 3 months again, and a lot more doctors appointments, since my last health update. There is a part of me that wants to shut everyone and everything out. Like maybe if I don't talk about it, everything will eventually disappear. Unfortunately, that hasn't been the case. A few weeks after my last blog post in November, I developed yet another odd symptom. I noticed a bright red patch on the tip of my tongue about the size of a quarter. It didn't hurt, but it was more sensitive to spicy foods. I tried to ignore it, but it got more prominent over the next couple of weeks, so I scheduled another appointment with my Rheumatologist. I showed him my tongue and reiterated the discomfort I was feeling from the dry mouth and dry eyes, as well as the persistent bladder pain. Once again he had no idea what was going on with my body, and towards the end of the appointment he made my family leave the room so he could talk to me one on one. He asked me if I felt safe at home, if I have any sort of history of abuse, he offered me antidepressants, and I lost it. I had reached the end of his capacity to help me, and I knew it. I denied any sort of abuse, and told him if I was depressed it was because I was in chronic pain and not vice versa. There's a certain point you reach after so many doctor appointments and specialists with no answers where they start offering psych meds because they don't know what else to do. But I don't want a band-aid. I want a solution. The last thing he said to me was, "How can I help you?" Bless his heart. He is a good doctor. We have first born sons that are the exact same age and he always asks me about Roman at every appointment. We decided to try referrals to more specialists; an ENT for my mysterious tongue problem, and a Urologist in Omaha for my bladder issues.
The 2 appointments were a few weeks out, so I decided to follow up with the Nurse Practitioner at my OB clinic to check once and for all for any sort of infection. I wanted to check for the ureaplasma again, and I wanted to get a urine culture via straight cath to eliminate any possibility of contamination. The day after the appointment my NP called to say they didn't get the right test for the ureaplasma, so I would have to come back into the office. Before I had a baby, it would have been easy to run up there on my day off. But now I had to make sure Brad or a babysitter would be available to watch him, and sometimes it feels like herding cats. I made time and went back to the clinic for the right test. A few days later she called me to say everything came back negative, no surprise, but she suggested I could try seeing the pelvic physical therapist they have in the office. I said sure, why not, and I set up yet another appointment.
I returned to the clinic the next week to meet with the PT and give her a summary of my bladder issues. She did a physical exam and found some trigger points in my pelvic floor that were tight and taught me a few exercises to release them. That night was the first night of many that I didn't feel the bladder spasms when I was going to bed, and I was cautiously optimistic.
Two days before my urology appointment in Omaha, the clinic called me and told me I needed to reschedule because the Doctor that was going to see me had a surgery that day. By now it was December and I was desperately trying to figure out the cause of my pain before the end of the year since I had already met my insurance deductible. Of course, they didn't have any openings before the end of the year, so I had to cancel the appointment.
On December 19th I finally saw the ear, nose, and throat specialist to take a look at my tongue. By this time the patch had faded a little, but was still noticeable. He had me open my mouth and after 2 seconds said, "Well, I don't think it's cancer." Uhhhhh, thanks? I wasn't really thinking it was cancer, either. I tried to word vomit all the symptoms I've been having the past year, but when you're dealing with a specialist, they only seem to care about their area of expertise. He basically said he had no idea what it was, could be some sort of geographical tongue, but wasn't sure. Geographical tongue is basically red patterns on the tongue that come and go in different shapes with no known cause. They think it might be autoimmune related. The ENT offered to take a lip biopsy to see if there were any leukocytes in my salivary glands, which would be a positive diagnosis for Sjogren's, but I was just not ready to have a chunk of my lip cut out yet. I left that appointment feeling extremely discouraged and just plain tired. Tired of waiting weeks or months to see a specialist. Tired of waiting over an hour in the waiting rooms just for them to see me 10 minutes and not have any answers. Tired of fighting to find someone or pay someone to watch Roman. And mostly tired of being in pain.
It's incredibly lonely when you're fighting an unknown enemy by yourself. I know Brad doesn't feel like I'm by myself. He has done his best to try to take care of me and Roman, but I know he gets tired of hearing me say, "It hurts." I get tired of hearing me say it hurts. It turns into a Me vs. everyone else situation. "Have you tried this?" my family says. "I really think you need to take an antibiotic," says Brad. Over and over again, as if I'm not doing enough. "You need more rest," from my dad. "You need a break," from my coworkers. And I want to scream, "HOW THE HECK AM I SUPPOSED TO REST OR TAKE A BREAK OR TAKE TIME OFF WHEN I AM A MOTHER!?" A mother who is still breastfeeding and all the medication everyone wants to try would mean I would have to wean my first baby. I was not about to wean him before he was ready just so I could try a myriad of pills that might not even work and have to carry the guilt of knowing I weaned him prematurely for my own body. So I suffered for a few more weeks while I waited for him (and me) to be ready, but the truth is I would never be ready. The decision ended up being made for me when I got walking pneumonia in January and would have to start an antibiotic that wasn't compatible with breastfeeding. Roman was down to nursing once or twice a day anyway, but it didn't make it easier. I was a mess. How do people do this? I thought to myself. And mostly in silence. There I was, crying my eyes out, sitting in the rocker we bought last minute after I had already picked out a different rocker, but saw this beautiful winged-back beauty as we were walking away and I made Brad turn around at Nebraska Furniture Mart. I hand-picked the perfect shade of beige to match the nursery, imagining all the times I would rock and nurse my baby in this chair, and somehow I was nursing him for the last time. I made Brad take some "last nursing session ever" pictures for me to remember, then made him leave so I could soak up every last feeling, every last little fingers in my mouth, and every last second of perfect eye contact with those beautiful blue eyes. I know it's somewhat taboo to talk about breastfeeding and weaning, but I am so dang proud of myself for making it to 13 months. So many sleepless nights and early mornings, so many moments missed while nursing in the car or sneaking away to a different room during family events, and one full year of pumping at night so I could go back to work. I feel like I deserve a medal at least, gosh darn it.
So anyway, I'm a mess all over again, thanks a lot.
With my body now finally being "mine" again, I decided to start fresh with a new doctor with great reviews, and see if I could try some new medication. I had developed a few more symptoms over the past few weeks, I was losing hair in gobs, I was experiencing bouts of vertigo, and I developed bad floaters in the middle of my vision in my right eye (which has made photography very difficult). The bladder pain was worse than ever, and I could tell I was starting to get some sort of urethral stenosis, because it felt like I was peeing through a straw and I could barely empty my bladder. Something had to give before I ended up with permanent damage. I begged my parents to come to my appointment, and prayed the night before that this doctor would really listen to me and help me figure out some sort of game plan. My appointment with my new doctor was on Wednesday, Feb 1st. She listened intently as I did my best to summarize the past year and all my health problems. The first thing she wanted to check was my thyroid, she was worried about hyperthyroidism with the weight loss and hair loss. She also sent me home on Doxycycline, which is an antibiotic in case I still have ureaplasma or some sort of chronic infection like Lyme's disease, and gave me some samples of Myrbetriq, which is for overactive bladder to help with the spasms. Later that night the nurse called back with my thyroid labs, which were all normal, but I will be taking the antibiotic and Myrbetriq for 1 month to see if it helps any of my symptoms. When I left the appointment on Wednesday, I felt like I had hope for the first time in over a year. I actually had a plan. It's a little scary, though, because this is my Hail Mary. If this doesn't work, then I really don't know what to do. It's only been 2 days since I started the medication, but I have noticed a decrease in the bladder spasms, which has been a relief. The worst part about chronic pain isn't the pain itself, but the psychological affect it has on your mind and your spirit. I have never been afraid to be in pain, until now. The uncertainty of when it will flare up, how bad it will hurt, and how long it will last is torture in itself. I feel more jittery, more on edge and sensitive to any sort of physical trauma. Sometimes I can't even stand to have Brad touch me, my nerves are so heightened. It will steal your joy so fast if you let it. I have cried out to God many times to take this pain away or help me find some answers. I have been riding the emotional roller coaster through the highs of feeling good and the lows of new ailments popping up left and right.
Please pray for me, if it's not too much to ask. Pray that the medication will ease my pain and cure whatever infection may by in my body. Pray for me to stay faithful and positive. I know so many people are going through much harder trials than me right now. Every day I look on Facebook it seems like there is another illness or tragedy. I don't deserve the blessings I have, but I long for the day this is all behind me and I can feel like myself again.
