Thursday, May 28, 2015

Something else to give over

Let me start by reminding you that my brain tumor was caused by the disease Neurosarcoidosis which is a rare disease found in only 10% of people with Sarcoidosis. There are very few doctors in the country that treat the disease. Even those doctors have very little information about the illness, therefore treatment is very difficult.

Yesterday’s doctor’s appointment was a bit frustrating. Although my appointment was at 11:30 p.m., I did not see the doctor until 1:45 p.m. Yes, that’s 2 hours and 15 minutes later! I understand that sometimes doctors can fall behind and have a bad day, but I would have loved to hear an apology! They would have cancelled my appointment if I was 15 minutes late, but I got nothing for my more than 2 hour wait.  I was getting ill waiting because I had not eaten since 7:30 a.m. I also was in a lot of pain waiting and took some meds on an empty stomach. Not good!

I also wasn’t happy with the visit. I’m glad my diagnosis isn’t as bad as it could have been, but, I did not get definitive answers for my symptoms that still raises concern. UUUGGGHHHH!!

The Brain MRI did not show brain damage. THANK YOU LORD! However, the spine MRI showed I have a bulging disc in the C5 Spine (neck area). It's just something else to give over to there Lord.  I was nervous when the doctor asked to send the results to a surgeon. I do not want to go under the knife again!  A less aggressive treatment will be administered; therefore, I will be having an injection into my spine as soon as I hear back from the doctor that will be performing that procedure. Prayerfully, this will relieve the pain and back spasm and surgery will not be necessary.  My doctor doesn’t believe the disease (neurosarcoidosis) has spread to my spine.

The headaches I’m experiencing can’t be explained. We are hoping they are caused by the disc and will leave after the injection. My facial swelling and pains can’t be explained, but I do have an appointment with my neurologist in two weeks. My eye issues---who knows! It’s frustrating when you have no answers, but that’s what happens when you have a rare disease.

I’m also am dealing with a flare up of bursitis in my hip. I have some PT exercises to do. This will be interesting with an excruciatingly painful back!

Additional rest is not the cure. It doesn’t help or harm. I get plenty rest! So, back to doing what I do. SERVING and doing what I can, when I can, while I can.

I thought I’d add a picture of me before and after steroids. The December 2014 picture was taken 2 weeks after I began taking steroids. The other picture was taken 3 weeks ago….so that means I have a few more pounds on me. The fat chick has emerged! LOL!  UGGGGHHHH! Good news! The doctor decreased my daily intake of steroids from 60 mg to 30 mg!


Wednesday, May 27, 2015

Almost Time to Face "One More Thing"

As I was getting ready this morning for THE doctor appointment.I noticed that I can't frown. As hard as I tried, my smile would not completely turn upside down. My palsy lips just won't allow it. LOL! You got to learn to take the good with the bad. I can't blame it on the tumor ! The joy of the Lord is my strength! 

I asked my husband how was he handling all of my issues. I had to put myself in his shoes-- it tore me up! I'm so glad to have this man in my life. Pray with me for him. Taking me to appointments, sitting in hospital waiting rooms, watching my health's decline & witnessing the bad days, getting food for us to eat, maintaining the home, working on his job, etc.
is draining. It's a huge task to be a caregiver. I love me some him. 

It's almost time for me to get the news. It's currently 10:35 am. My doctor's appointment is scheduled for 11:30 a.m. I am ready. God won't allow what I can't handle and He will never leave me nor forsake me.

Tuesday, May 26, 2015

One More Thing

One thing I’ve learned in all that I have been going through is “don’t ignore your body when it’s talking to you!” I’ve been experiencing additional challenges that has caused great concern for me, my family and the doctors. Funny, these challenges hasn’t stopped me from service. Thought I’d interject that for those who need to know God’s grace still works! Anyhoo, I had a brain and spine MRI done last Thursday.  I was to get the results of the test on tomorrow (Wednesday) during my visit with my doctor. Unfortunately the test showed another problem that need immediate attention and required my approval to be submitted to another specialist; therefore my doctor called first thing this morning and gave me a portion of the results. I had a shaking like a leaf moment and then I researched the internet to educate myself about this "one more thing."  WOW, this is really happening.
 
So, I am a little nervous about going to the doctor tomorrow, but I am glad to know the portion of the results that was shared. I already know to brace myself and I am ready to get to the appointment.  I’ll be getting full information tomorrow and then notifying my family before I share with all of you wonderful people that have helped to keep me going. Love you all dearly and please whisper a prayer for me.
 
A dear friend called and told me to keep calm and don’t stress. The only way I could achieve this was through the Word of God. I’ve been reading, meditating, and studying all day. I even started preparing a sermon. In spite of it all, it’s been a productive day!

In this raw picture of me some of my symptoms are prevalent. Here you see the darkness under the eyes and facial swelling (not as bad right now). It’s amazing what make-up can hide. At church, people are always encouraging and telling me how great I look. Inwardly, I’m thinking, “You just don’t know!” Make-up is a beast! It can hide a lot of pain. The good thing is, I can function without make-up and I can function in pain. GRACE is powerful!

Be blessed,
Roline

Thursday, May 21, 2015

The process of test continues

Today, at 3:30 p.m.,  I had an MRI of my brain and spine done. The MRI was moved up from July
Divalicous in a scrub! The left was my
MRI chamber for 45 minutes.
because of new concerns about my health. Getting an MRI is not for the claustrophobic! I spent 45 minutes in the less than ideal cramped quarters. I have been having really bad back muscles spasms, so I took a muscle relaxer and pain pill before the procedure. As soon as I got on the table, the spasms got worse. I had to take a second dosage. It was hard to keep still for 45 minutes while my back muscles were twisting out of control. I’m glad the current tests are over. Now I have to wait until next Wednesday, 6 days, for the report. I am looking forward to the GOOD report!

After all those meds, I'm higher than the Eifel Tower. Time to "sleep it off." Nap time.


Monday, May 18, 2015

Where do I begin?

This past 2 weeks probably has been the worst weeks of my life. Yes, I hit my head 2 weeks ago, but that incident played little into my woes. Before the hit, I had been having increased headaches, fatigue, weakness, muscle spasms, shortness of breath during sleep, facial swelling and a slew of
Red-eye at the top, Swollen face on the right,
Still Divalicious at the bottom.
other symptoms. Once again cooking and cleaning has become foreign to me, but at least my home is looking decent. My left eye is still not functioning properly. It’s beginning to burn and become red from irritation. If I was a drinking woman, you’d say I had one too many “spirits.” LOL! My steroid daily dosage has been increased. The fat chick won’t be dying anytime soon. SIGH! I’m up 28 lbs and counting, but I’m still divalicious!

 
I was scheduled to have my postoperative follow-up MRI in July, however, my doctor has moved it up to this coming Thursday. I’ve also had blood work done. This is all in an effort to find out what is going on and to discover if the disease has spread to my spine. Ut-Oh! Nevertheless, IT IS WELL WITH MY SOUL!.....I still can’t believe all this is happening! Next week, I return to the doctor to get the results of my test.
 
So why was the past few weeks my worst? While dealing with my health challenges, I slipped into a deep depression. Yep, I can work depression--- you didn’t know it, but those living under my roof saw it clearly. I know what the Word says, but that doesn’t change the fact that I went there! It does explain why I haven’t blogged in a minute. I didn’t sleep much, wouldn’t eat, cried a lot, and was in a funk! I wasn’t depressed about my health. I allowed deep family hurt to overwhelm me so much so that I came face to face with having to make one of the most difficult decisions of my life. I’m trusting God to work it out. I’m learning to just stand when I’ve done all I can. During the two weeks, my husband and children showed me just how much they loved me through their support and care. Tears are welling up in the corner of my “good eye” (LOL!) just thinking about their gentleness.
 
I am getting a clearer picture of this particular verse:
Romans 8:17-18 - and if children, then heirs—heirs of God and joint heirs with Christ, if indeed we suffer with Him, that we may also be glorified together. 18 For I consider that the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us.
 

As I suffer with Christ, he gives me grace to do what he assigns me to do. He gives me the strength to serve. Sorry folk, I refuse to use “I need to rest” as an excuse to not do ministry. I get plenty of rest. Also, I am only operating in ministry at a fraction of what I did pre-illness. Jesus served while hanging from a cross. He did what he could do while in a circumstance of suffering. I’m just trying to be an imitator of Christ. I’m doing only what I can when I can while I can.

Love  to you all! - Roline

Monday, May 4, 2015

Ouch! I hit my head

First, I allowed myself to be stressed about something that is out of my control. It was something hurtful but I can’t do a thing about it. Also, the day has been full of my receiving news of several family members being hospitalized and/or treated at the emergency room.
 
I was still feeling somewhat sluggish the entire day. I didn’t realize I was out of my very much needed eye drops. I had my daughter to bring me to the store to buy more. Upon leaving the store, as I was getting into my daughter’s car I hit my head. I call it the “demon car,” because when I attempted to get into it, in my mind the roof lowered itself and hit my head while I was getting in at full speed. OUCH!! I literally saw flashing stars on impact. That car was trying to take me out! When we got home, I started feeling a little light headed…just a little bit. Currently I have a headache that’s out of this world. I took a pain pill, however, I am trying to stay awake so that I can monitor my body.  To add, the back muscle spasms wants a piece of me today! They spasms are no joke and they don't play fair! Uuuuggghhhh!! I declare, TOMORROW WILL BE A BETTER DAY!
 
Yes, I took a pic of me in pain and Catherine's demon car. When you see it,
you better hide your momma
and hide your babes,
because the demon car
wants to hit your head!  LOL!
 
 

Saturday, May 2, 2015

Oh, Dear!

You know that old guy in the church whose hair is barely holding on? Every church has him. He’s either an usher, deacon, or choir member. Although his eyebrows and mustache is heavily gray, he is a faithful supporter of Miss. Clairol # 1 (jet black), and has a huge receding hairline with little hair fuzzes here and there that he refuses to cut off. You know where I’m going! I’M THAT GUY! LOL! I use to make fun of that guy, and now it’s me! OH, DEAR!  My hair is somewhat growing. That is, as much as it is growing, it is falling out. But, I do need a haircut! LOL!  I’m loving wearing head wraps. If I had known I would be this much into them, I would have not spent money on two wigs.
 
This last month I have been silently suffering. I started having sporadic muscle spasms in my back which my doctor thought was not related to the tumor. About 2 weeks ago I returned to the doctor in severe pain from the now frequent spasms. One of my meds was increased to help settle the spasm. It’s better, but now I am concerned about the root cause. The increase of meds has caused me to sleep more during the daytime. I am also still dealing with the facial palsy that is affecting my left eye. Some days my left eye drips water like a dieting fat guy sweating at an all you can eat buffet.
 
I’m learning to live with my new normal. I’m back to speaking and preaching. The doctor has given me suggestions of what to do before I speak to minimize pain and discomfort. Thus far the methods has worked. Sickness is no excuse to not serve! After all, this is for God’s glory.
 
Let's get back to the hair. The sunroof is still on deck, and the Red Sea is still parted. The pics posted from top to bottom shows the progression, with the bottom pic being taken today. I am so grateful to have a husband that really doesn’t seem to be bothered by my appearance. Talk about through thick and thin----we didn’t think it would apply to a hairdo! I am grateful to have a man who has inward substance. He loves me the way Christ loves the church ---- UNCONDITIONALLY! I’m blessed!



Be blessed,
Roline