Good or Bad?

Not my favorite test. People hate the dentist. I LOVE the dentist and dislike Ophthalmologist tests. =)

I've had new issues since April/May that got considerably worse through June-August and started getting a bit better in September. I mean, better-ish, all things considered. (Imagine instead of a million knives, just 1,000). haha

As is the case with my crazy body, when something new happens it involves quite the journey to find answers. I am NOT a textbook case in any sense of the word for any of my diseases. It is because I simply have so many compounding diseases. So, as I've bounced around from specialist to specialist, 

once again I've stumped them all. Each doctor's specialty does fit one aspect (hair loss or eye pain or headaches), but not all of the symptoms (swelling of the head and face pain haven't fit them either). There have been a few guesses as to some of the problems-optic neuritis, severe malnourishment from the Tecfidera which was in my system for over a year, a new autoimmune disease-alopecia something. Some of the treatments are-wait it out, live with it, let's inject your head with steroids and come back to see me. When the dermatologist repeated for the third time that the steroid injections will hurt (it is several injections-maybe 10?), I did listen a bit more intently. But, I shrugged my shoulders and said it was fine. He seemed concerned that I wasn't concerned. 

Pain. 

Psha. 

Been there. 

Done that. 

Doing it this very moment. 

I thought back to times the pain has been pretty intense, but I survived. 

I've had 5 spinal taps which includes 2 botched ones. My first spinal tap I kept telling them that they were supposed to check for something else, but I couldn't remember the 3rd thing the neuro wanted checked. They called me the next day and I had to get another spinal tap because they forgot to check for pressure. My body didn't have enough time to heal, so the spinal fluid was leaking out inside my body causing a spinal headache. Meh, I survived and two days later went with singles for a tiny Halloween California cruise. I spent a good amount of time lying down, but I didn't let it stop me. I danced a bit and have some good, but also painful memories of my time as a pea in a pod. (We were all vegetables. HAHAH)

My 3rd spinal tap the doctor had students watching him and he kept hitting my spine with the needle and moving it around but couldn't get in. He was ready to give up after his third failed attempt. I was rolled into a ball and told him he HAD to do it today. I kept encouraging him and telling him he could do it. I couldn't reschedule for the following day because I had a test at UNLV (this was at the Mayo Clinic in Arizona) and needed to drive back. I encouraged him to try again and each time he apologized I told him it was okay and tried to boost his confidence. He never could get into my spine. I did my fourth the following day (with Xray). Meh, I survived. I am forever grateful for that place!

Or that time when the doctor almost killed me and I kept getting worse and worse. I would go to work and twitch and shake on the floor while I had kids bring me their homework (case manager). I collapsed at work and got permission to work on my couch. I couldn't stand for more than 2 minutes without vomiting or passing out, my intestines stopped working entirely (it's painful after 5 days), I was bleeding over my kidneys (under the skin), eyes rolling in the back of my head, couldn't stand, etc, etc. While I could go to church, I would lie on the floor of the mother's lounge twitching until some startled nursing mom needed the room. I'd crawl/stumble out and have my roommate take me home. Until I couldn't go out anymore. I worked for months on my couch doing paperwork, crawling down the hall to vomit and come back to keep supporting myself. But, I didn't ask for a lot of help either (beyond someone else grocery shopping). I later learned I was most likely a few weeks from death or a coma. Meh, I survived. I didn't get answers for a while, but the spirit prompted me with words from a pharmacist months earlier while I lay in the ER. My brother had called me for my birthday, hung up and called my family for me. He used to work at a retirement home and said I was talking like his patients did right before they died. But, I was able to work on my couch until I was strong enough to work in the office and eventually was able to go for my Master's. (I had been accepted for an earlier program but being on the verge of death and then trying to recover makes it hard to accept. They pushed me to the next program and it turned out to be even better timing professionally). 

Oh, and remember that time that my OBGYN confused LABOR with a KIDNEY STONE? Even though I explained that my mom only felt back labor and my sister ONLY progresses with pitocin? So, I taught for two days while I was in labor. And kept calling the doctor to say the kidney stone STILL hadn't passed. I had my husband get me Depends and I prayed harder that the kidney stone would pass so I could gain control of my bladder again. I kept moving as well as I could until I got in with a Urologist five days later for a second opinion, since my OBGYN wouldn't listen. Turned out I never did have a kidney stone. The doc could have done a simple ultrasound to check, but never did. I went to the hospital and when the nurses called the other OBGYN to say that there was definitely amniotic fluid, he didn't believe them. It could have already been on their gloves. Do three more tests to confirm. Turned out I hardly had any amniotic fluid left-just two tiny pockets on one side and I was a high risk for infection. And then the doctor put me on Pitocin for 30 THIRTY, yes, 30 hours. I had refused to work with the one OBGYN who couldn't tell the diff between kidney and a baby. But the second one, wasn't fantastic at listening either. I don't tend to show the pain I'm in and most doctors aren't used to that, I guess. All in all, I was in labor for 6 days and finally got a c-section. The nurses joked about my horrible doctors, the cutest 7 pound kidney stone they'd seen, and some would come in just to meet us-"Oh! You're THAT couple everyone is talking about." They were amazed at how easily and quickly I was up and around so soon after a c-section. But, it is simply what I do. Push through the pain. When you can't see, listen. When you can't hear, feel. When you can't feel, sit down. When you can't sit down, reach out. Pray all along the way. Needing the hemorrhoidectomy to fix issues after the fact (half a year later) wasn't fun either. The surgeon and assistants couldn't believe how bad I was (after a month of bringing down inflammation so he could actually do the surgery). All while I finished my last year of teaching and balanced work with being a new mom of a baby who rarely slept. But, if I had been pregnant just 100 years earlier, she and I would have died. Thank goodness for modern medicine. 

But, back to pain in the present...

A few new hairs now stick straight up. I'm alfalfa over here, guys!

Turns out steroid injections do hurt. Not as bad as a serotonin syndrome or 6 days of labor or a botched spinal tap, but it most likely exacerbated my eye pain. My eyes, especially my right eye, felt like it would pop out of my head. The face, eye and head pain was so intense sometimes that I almost passed out. That isn't normal, but a few rare cases do have side effects of too much pressure behind the eyes from the injections. But, the fact that I've had issues for several months means there's something else going on. I was able to get in with a phenomenal ophthalmologist who actually did have some logical guesses without dismissing the things he can't make sense of. He thinks I have Lupus and/or Graves' Disease on top of everything else. Apparently it isn't super common, but someone with Hoshimoto's Thyroiditis can develop Graves' disease later too! I laughed and asked the doctor how it was possible that I may have gained 3 new autoimmune diseases in a few months. He said autoimmune diseases cluster together. Plus, if I am positive for lupus, I've had it for a long time (tested positive in 2002, but never an official diagnosis. It was later dismissed by a doc as MS was the main invader in my body). I seem to get new permanent diseases about every 3 years or so anyway. 

I left the doctor's office with a bit of a heavy heart. I'm in my mid 30s and how many more autoimmune diseases can I handle? May the resurrection come before I'm 45...kuz I can't imagine how many I'll have by then. A line from my patriarchal blessing kept going through my head over and over, "Satan won't let you go through life easily." I was depressed for an hour or two and then started focusing on God and the good I've had in my life. I began trying to find a silver lining to possible new diseases. Maybe I could make it into the Guinness Book of World Records. The woman with the most autoimmune diseases in one body. My mindset shifted as I figured that in the end, I'll survive, and it isn't the end. By focusing less on my trials, but more on ways I have seen God's hand in my life, it was easier to accept. 

A few people really helped me deal with it easily after that first hour or so.  A dear friend reached out to me because she felt inspired and had no idea what I was going through at the time. My sister-in-law and brother have been so kind. My family and friends have been a wonderful support (of course my incredible hubby and adorable lil girl are my rocks). In looking back at other times in my life where I have literally passed out from pain and felt quite alone, I can see that I wasn't (alone). I wondered if God truly loves me, but I don't wonder any more. I know He does love us. A lack of pain is not the same as love. Love comes through the pain. The sister missionaries came by twice this past week and as we ate, they asked how I don't get angry at God or feel like He has abandoned me. Several investigators have expressed their anger at God. There have been times (as mentioned above) that I HAVE felt angry and abandoned. But, thankfully I didn't dwell on that and in time have seen strength beyond my own capacity as I have been able to persevere. I accept the sorrow and sadness, because it is real. But, I don't dwell there. I don't focus so much on Satan or someone else's free agency that impacted me. When I do fall into a rut, I get a priesthood blessing and tap into sources of light God provided for the journey. (Scriptures, temple, more prayers, fasting, etc). I am NOT saying I have it all figured out. BOY, do I still have a long ways to go. But, I am saying that I have never gone wrong by turning to God, looking for the good, and pushing through. There is a lot of evil in the world that seems to be growing. It may be daunting and overwhelming. But, God is bigger, more powerful, and will come off conqueror. There is still a lot of good in the world. 

While dealing with the theft on our home in KS (again), we had to wait and visited a book store to kill time. I found these journals side by side. You could fill both full easily. But would it change you to just choose one to focus on day in and day out?