Sjogren’s Syndrome is more than a dry mouth. More than dry eyes. It can affect you in ways you would never imagine.
Sunshine can be wonderful for the soul. But for a sjogrens patient? Not so much…
I went outside WITH sunscreen on today for an hour, and I am completely burned! Ouch.. I know Plaquenil can make you sun sensitive but goodness!
Any suggestions? Is there a particular sunscreen I should be using? Help!
And no, the title isn’t referring to me. I like to think of myself as a very young, young woman! ;)
Being sick is getting old.
These scenes are becoming all too familiar for my liking. But hey, at least the nurses give me pink bandages, right?!
It’s sometimes so hard to have a joyful heart when you physically hurt. It’s hard to be joyous when you’re afraid of the future. But, the good news is that my Savior holds my future in his hands. I’m so thankful for that good news!
I have so many people make comments like, “Well you just stay sick, don’t you?!” or “You’re sick all the time!”. Those comments hurt me more than those people will ever know. But, as my wise and wonderful boyfriend points out, they don’t intend to hurt with their words. In fact, most of those people don’t know anything about my health. It’s still frustrating, though. I want to just yell out, “Do you think I ENJOY this?! Do you think it’s fun getting shot after shot just to manage pain?? Do you think it’s fun to get IVs on the weekend?!”
But I don’t yell at them. I just take the opportunities to educate when I can. Although I don’t appear to be sick on the outside, my body is sick. And it will never go away.
Despite all of that, I am blessed beyond measure. I have an amazingly supportive family that allows me quiet time to rest when I need it, supportive bosses and co-workers that understand that sometimes it takes me a little extra time to heal, and a wonderful boyfriend that knows the ins and outs of my disease like you wouldn’t believe. He’s prepared to do whatever it takes in the future, and I love him even more for it. Thank you, Lord, for placing me in the perfect place.
I hope that you all are enjoying this gorgeous Saturday. Thank you for reading, once again. I appreciate each and every one of you and the support you give! :)
Hi friends! I am finally getting around to updating you guys on what’s been going on…
Just to recap, on Wednesday, February 19, I went to AppleCare and tested positive for the flu. High fever, vomiting, terrible headache, et…
So, the following Friday, I woke up with an unbearable migraine. After no relief from any medication, I finally went to the ER. I figured I was probably dehydrated from little food / liquid and throwing up. After a few hours, they gave me a Toradol shot and sent me home, saying I was not dehydrated. Saturday morning, same scenario… but much worse! I sat in my bed sobbing, almost hysterical from the amount of pain I was experiencing. Back to the ER we went…
This time, they took me more seriously. Unfortunately, I had to wait for nearly four hours with no relief before I was seen. The doctor’s gave me a bag on fluid, as well as a Toradol shot, a Benedryl shot, and a Reglan shot (I believe). This finally did the trick!
The next few days were spent taking things very lightly. I was still experiencing a good deal of nausea, etc. Fast forward to Thursday morning (the 27th), a week and a day since I tested positive for the flu.
I woke up freezing (bad sign) and in severe pain. I had a terrible congestion type headache that made me feel like my head was in a vice, as well as a lot of ear pain. Fever = 100.7. Once again, I was crying in my bed wondering WHY I couldn’t just get better!
I got my mom to take me BACK to AppleCare along with my new set of complaints. The doctor confirmed my suspicion – that I had a severe sinus infection. But she added that on top of it all, I had a pretty bad ear infection, as well! So, I received yet another Toradol shot, an antibiotic injection, and a steroid shot! I’ve had over six shots in about one week! Luckily, needles don’t bother me. Especially when I’m in that kind of pain. At that point, I would have likely been okay with a needle in the eyeball. ANYTHING to make the pain go away. She also prescribed a nose spray for me which will hopefully help prevent so many sinus issues, as well as an antibiotic that I’ll take for ten days.
I slept a good amount of the afternoon. At dinner, I managed to eat a decent amount (the first meal I had all day). I took my newly prescribed antibiotic and had no issues with it, which is huge for me. Around midnight, I used my nose spray and spent a long time in the shower, soaking in the warmth. As the water got cold, I gathered the energy to get out of the shower and climbed into bed. At this point, my pain level was minimal.
Fast forward to this morning (Friday, February 28th)…
I FEEL LIKE A NEW PERSON!!!
I am crossing my fingers as I say this, because I feel like I’m still on that teeter totter edge that could likely go one way or another… but…
I FEEL LIKE A NEW PERSON!!! :)
I am praying that this lasts. I am so so so tired of feeling as awful as I have. I hope that having today off of work, and this weekend, will help me to feel a little more rejuvenated and ready for the week.
So… Last Friday I was diagnosed with a sinus infection. I ended up working all weekend and didn’t get my antibiotics from the pharmacy until Tuesday. So, Tuesday night… I take it as directed and by nightfall I was feeling pretty bad. I went to bed with a slight headache.
Over night, I woke up approximately ten times noticing my head still hurt… and that I was extremely cold. I knew right then that something was up.
When I woke up Wednesday morning, my head was throbbing and I had a temperature of 100.5 degrees (A fun fact about me: I RARELY run a fever. If I have a fever, I know I’m in bad shape). I went to our local AppleCare quick care and was immediately swabbed for a flu test. My temperature had already increased from 100.5 to 101.5. The result? Positive for the flu.
Needless to say… it has NOT been a fun week. I have missed three days of work (which I never do). I haven’t talked to anyone because I am simply too miserable to speak. Everything, I mean everything hurts!
I have not taken any more of my antibiotic for my sinus infection because I haven’t been able to keep anything down. Tonight, one week since the doctor told me I had a sinus infection, I finally took my second dose of antibiotic. If you can spare the time, please say a prayer for me, friends! I hope I am on the upswing.. but my body is just spent!
42 He went away a second time and prayed, “My Father, if it is not possible for this cup to be taken away unless I drink it, may your will be done.”
I often say that my diagnosis changed my life. But, in reality, it didn’t change anything at all. Sjogren’s was already inside of me, waiting to be discovered.
I am learning to cope with the fact that I have a disease from which I will never be cured. Jesus prayed to God before He was crucified, saying, “My Father, if it is not possible for this cup to be taken away unless I drink it, may your will be done”.
My disease is mine. It is my cup to drink. I cannot pass it away. I cannot throw it down. I own it. But it doesn’t own me.
I know that we all come prepackaged by God. Our future is no surprise to our Heavenly Father. He knew all of the trials that would come my way, and I believe He packaged me accordingly. He has provided me with every tool I need to deal with life’s struggles and heartache. Today, I am trying to rest in that knowledge.
God is not surprised. He is not shocked. He knit me together in my mother’s womb knowing every tear I would ever shed. He holds my future.
And I hold my cup.