Thursday, June 25, 2015

Look Where He Brought Me From!

It all started with a headache. I was having them daily for almost a year. It was determined that I 
Taken Dec. 12, 2014 while hospitalized
needed new glasses/contacts for my eyes and the headaches would go away. They didn’t! I shelved the idea of returning to the doctor because I had other health issues (that at the time I didn’t know was related to the headaches), my mother’s diagnosis of dementia, and her transition from my home to a nursing facility to deal with (which was not going well), so I suffered in silence for another year. Everything came to a head Dec. 10, 2014 when I was hospitalized after having I had a grand mal seizure. The next day I would be diagnosed with a Brain Tumor and then suffer from Facial Palsy, paralysis to the left side of my face. From this day forward, life for me has drastically changed.


Although I don’t have full function of my face, I have come a long way. It’s not as difficult to talk as it was at the onset of the palsy. My face is not as crooked anymore and I can once again smile. However, I still have to tape my eye shut at night to prevent dryness while I sleep. I continue to use a straw when drinking beverages. I still have difficulty chewing.

As I look at this picture of me from December, I thank God for bringing me thus far. I may not be where I want to be, but I’m grateful I’m not where I use to be --- with my face and with my life!

Tuesday, June 16, 2015

Not feeling good

This has been a pretty rough few weeks. Costochondritis is a beast. The pain is unbelievable. After
Last Sunday's Photo Shoot. I don't look like what I'm going through!
finally getting the treatment meds needed, my pain level has decreased from BEYOND MISERABLE to MISERABLE to currently REALLY BAD!  It may take a few weeks for the rib pain to stop, and then it may return. UGGGGHH!!! Neurosarcoidosis attacks the body, joints, and vital organs.

 
With all of the pain, I did muster up the strength to attend Sunday School and visit my mom last Sunday. Being able to minister is very important to me. It is helping to keep me sane! By the time I got to my mom I was so fatigued and in pain that I couldn’t stay long. I am, however, glad I pressed on to visit her. She was in a good mood.
 
The shots I had last week doesn’t seem to be working. Oh, boy! This is not what I had been praying for. I have a doctor’s appointment this coming Friday with my neurologist who hopefully can give some insight on what may be the next step.
 
I did manage to wash dishes today. It took two days (stacked them one day, washed the next), but I was determined to finish up the task myself.
 
I’ve pretty much been in bed the last few weeks. My addiction to Court television shows is getting really bad. I was  watching “The Hot Bench” and found myself so drawn in that I actually said out loud, “I’ve heard enough. I’m ready to rule.“  LOL!  I have got to get a life!

Wednesday, June 10, 2015

It's me, it's me, it's me O Lord! I got something else for you to handle.

So much has happened since my last entry. This illness is trying to get the best of me!
Feeling Blah but still have something to smile about!

Monday I had injections to help with the pain from my bulging disc and muscle spasms. I haven’t had spasms since, however I am still sore and stiff from the injections. This pain should be leaving soon.
 
Last Thursday, I started having severe pains in my left ribs just below my breast. This is the fourth time I’ve experienced pain in this area, however never has it been this excruciating! The pain mimicked that of a heart attack. I didn’t panic, and pretty much took it like a big girl! By Saturday I was contemplating going to the hospital because it became too difficult and painful to get out of the bed. Sunday, I went to Sunday School but not worship services. That was about all I could do. I noticed Sunday afternoon that I had excessive swelling in the area of the pain.
 
A good friend who happens to be a physician told me what to do to help with the inflammation. Because she is a cardiologist and asked several rule out questions, I was relieved that she too didn’t believe my heart was the problem.  After some research, I pretty much knew what the problem was, but was going to wait until my Monday doctor’s visit. After an examination, the doctor diagnosed me with having Coostochondritis. A description from the Mayo Clinic:
  • Costochondritis (kos-toe-kon-DRY-tis) is an inflammation of the cartilage that connects a rib to the breastbone (sternum). Costochondritis is sometimes known as chest wall pain, costosternal syndrome or costosternal chondrodynia. Sometimes, swelling accompanies the pain (Tietze syndrome).
  • Costochondritis usually has no apparent cause. Treatment focuses on easing your pain while you wait for the condition to improve on its own, which can take several weeks or longer. Costochondritis usually goes away on its own, although it might last for several weeks or longer. Treatment focuses on pain relief.
Although there is no real cause for Costochondritis, it can be brought on by a tumor or sarcoidosis, both of which I have. Neurosarcoidosis is no joke! Just another thing to give to the Lord. I’ve pretty much have been in the bed since Thursday. Today I am attempting to cook my family a home cooked meal.

It is well with my soul! God be glorified!

Roline

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.