Friday, February 27, 2015

This Week!

This has been a great week, yet somewhat emotional. Tuesday, I celebrated my 51st birthday. It was
Thuggin' my Bandana to the Doc's office
great receiving birthday greetings from so many family and friends. I even heard from my brother whom I just met the day after Christmas (WOW). I am so grateful. However, I did not hear from my father. It’s easy to say it is what it is, and you would think I’d be use to it by now after all he hasn’t remembered my birthday in over 25 years! But you would think after having a second surgery 4 days earlier he would call and say “Happy Birthday”, or even “How are you doing?” Nope, nothing! it has been a rollercoaster ride with having to deal with a very strained relationship with him and my own illness. Illness does not put other adversity, including family drama on hold. This is why it’s important to study the Word BEFORE the storm so that you can stand during the storm. Disclaimer: again, please don’t say anything negative about my dad. I’m giving you insight, I’m not looking for you to cast judgment or get a pity party started. LOL!  I’m allowing myself to be lead by the Spirit as it relates to my dad. (Hint, Hint, no advice necessary unless you are the Holy Spirit. LOL!)


Today was Field Trip Day! It's pathetic when getting out of the house means going to the doctor! It's even more pathetic when you are excited about it. I had a morning doctor’s appointment. That monthly pain management appointment rolls around quick! Afterwards, Earnest suggested we have an early lunch at Cheddars. I was feeling pretty good, so why not make this field trip last longer. While at lunch, Earnest mentioned he had a coupon for Stein Mart.  So what the heck, I took the
New Headgear
bait! I thought, if I just stay in the accessory area, I shouldn’t have to walk too much. Besides, I needed to get a few cute scarves for when I go out. I can’t wear hats or wigs yet because they put too much pressure on my incision. So, for now, scarves it is.  By the way, half my head is bald now. The rest will most likely be bidding me adieu within the next 2 weeks. Hair is the least of my worries. Wish my healing time was as fast as my hair loss. Know what I mean! I still can’t believe this is happening to me.


Today’s outing did tire me, but not as much as usual. My endurance is definitely increasing.  Now that I have new scarves, it’s time to return to church. LOL! I do plan to attend at least Sunday School this coming Sunday and, if I’m tired, go home afterwards! I still have numerous staples in my head, therefore, I don’t want to overdo it. By the way, the staples come out Tuesday morning. HOORAY!

Many people have asked my why do I have such a positive attitude and why is my faith in God so great. Here it is----you can’t take short cuts. You have to study, meditate, and pray CONSISTENTLY for yourself! Attending church, conferences, musicals, Bible Studies is not going to increase your faith if you don’t roll up your sleeves and do your part. Standing in the $100 dollar line at the conference and being prayed over or given a prophetic word by the evangelist is not going to bring you peace if you don’t do your part. For the past month and a half, because of “mushy post-op brain activity,” I have not been able to study. My consistency before the tumor in study, meditation, and prayer allowed me to retrieve what I needed from my spiritual storage. I double dare you to study for yourself. Make God a priority.  

Sunday, February 22, 2015

Today I cried....but still I rise

Mood swing
Today I cried. It started out being a cry of joy and thanksgiving. Today, my husband brought home a few cards and a gift from people at my church. I started thinking about all of the cards, gifts, and flowers I have received. You my family and friends have been very generous. I have read every card, message on FB and my blog and I am so grateful. Some I have said thank you to and some I have not. And that’s when my reason for crying began to shift.
As transparent as I have tried to be, I can’t write everything. It’s just impossible. One of the reasons is due to my short-term memory issues. So, I cried because I have received much, but I can’t remember who everything has come from. I knew at the time of receiving it, but because me and the family didn’t write everything down, my memory has failed me. I am grateful for everyone and wish I could express my thanksgiving in a more personal way. This made me cry tears of frustration because of what has been taken away.
And then I started crying because of why I received so many gifts. I am sick. No, I am very sick (gotta call it what it is) and I need help daily.  So I’m having a moment….just reflecting over the way things are now
  • I can’t drive for a year. I’m dependent on others.
  • I must walk with a walker.
  • I can’t clean my own house regularly.
  • My head has a second incision and an additional 30 plus staples in my head.
  • There is a chance of my non-working eye to be permanently damaged.
  • My family has got to be exhausted from the additional duties of caring from me.
  • I can’t visit my mom as I would like to. Today I realized since I am her care giver, she had not been getting her snacks and soda. This really saddened me.
  • I can’t bathe or shower without one of my family member’s nearby to monitor my safety and/or help.
  • We are not going to talk about getting up and down from the toilet.
  • Cooking, my passion, is out of the question for now.
  • The numerous medications I take is scary.
  • The uncertainty is still there.
Even though I have made great progress. I’m having a moment. Guess I never stopped to think about it.  Even though I’m having this moment, I haven’t forgotten that the God I serve is greater than my problems……I’m just having a moment. Why am I having this moment, today, now....blame it on the rain (and you thought I was going to blame it on the tumor). 
Weeping may endure for a night, but joy comes on the morning. Come on morning! Today I cried....but still I rise. God is still good and his mercy endures forever!

Saturday, February 21, 2015

Treatmeat has begun, Post-op News

My second surgery went well. The neurosurgeon revised my incision. This means without having to
I have to patch up my eye because it still
doesn't properly work. #BellsPalsey
cut open my skull again, he cut open my incision cleaned it out, placed some antibiotic cream in it and stapled it shut again. In 15 days I have to go back to the surgeon to have the staples removed by the surgeon. This will give him an opportunity to examine the healing of the incision. I’m happy with this. I remember when the staples first were being removed, the nurse had a difficult time in the area that later oozed. It was really sore therefore, I don’t think it was properly healing even back then.


My stay in the hospital went well. I WAS A GOOD PATIENT!!!! LOL! It was funny because most of the people  who served me before, served me again and they remembered my shenanigans. LOL!! I REDEEMED myself. The entire surgery room team was the same, so most of them came into my prep room and laughed and clowned with me and my family before rolling me to the surgery room. I thought that was very sweet. The surgery team and I got along really well the last time, so we had to pick up our conversation where we had left off from my last surgery. Once in the surgery room, I don’t know if it was time to put me under with anesthesia or just time to shut me up, because I can do some talking! LOL!

Friday was my neurologist doctor’s appointment to begin my treatment. Snow, bad weather, or SURGERY was not going to keep me from this appointment. With head bandage and barely being able to stay awake, I made it to the appointment. I was ready for the process to begin. By the end of last year I lost 30 pounds. Well, with my treatment, fat girl will be returning. For the next 6 months I must take a high dosage of steroids. I also have to see another doctor who will conduct test to make sure other parts of my body have not been affected. This was a hard pill for me to swallow because this means radiation and chemotherapy has not been ruled out. But it also means WE DON’T KNOW, so I am not going to worry about what I don’t know.

I thought I’d be returning at least to my Sunday School Class on tomorrow. Oh well, I have to rest just a little bit more. I am getting the rest I need and some more. I don’t plan to go back into the hospital. ……uh, didn’t I say that before and ended up back in the hospital! SMH! Well, I’m not going again!

In the Bible, God told Satan “Have you considered my servant Job.” He allowed Job to be tested by Satan because He knew Job would past the test. I’m being tested. It’s good to know that Satan had to get God’s permission and God is only allowing the test because I will pass it. So why should I worry? God got this! My question to you is, "Can God trust you with a test?" "Will you make Him look good?" 

Wednesday, February 18, 2015

Surgery Again! ......FOR REAL! .....REALLY! .....I KID YOU NOT!

Top shows a portion on my incision area oozing and my balding, Bottom is my and Cat after visiting the surgeon. Large pic is me showing off my new headgear!
Yesterday my incision started oozing again. This time more than it had before. I took pictures of the area and sent to my doctor friend. Do you know my friend had the nerve to call me impatient just because I didn’t give her time to look at the pics before I called her back. I admit, I was nervous. Heck, scared!  My friend recommended that I call the doctor in the morning. Going out in last night’s snow and ice was not an option.

After calling the surgeon this morning he wanted to see me immediately. Catherine and I treaded through the dangerous slick highways, Once there the doctor warned me that he would have to take off the scabs that remain on my incision area, That was his way of telling my it would hurt. As Eddie Murphy’s Buckwheat character said, OUCH, dat hurt! Once he removed the scabs our suspicions were confirmed. The bone of my cranium was exposed, therefore, the incision is not properly healing. I am oozing blood and a yellow-green substance (suspected infection). I will be having surgery in the morning to reopen the incision to repair the incision and evaluate whether I have an infection. SURGERY!!!!! AGAIN!!!! I didn't se that coming!

It’s getting harder to remain positive, but I am choosing to work against negative thoughts. When the doctor said surgery, I got so nervous that I began to shake. He had to calm me down by rubbing my hands and assuring me that everything will be okay. Heck, he said everything would be okay with the first surgery? “Dude, you are about to cut my head open again!” As a matter of fact all you folk who told me everything would be okay because your Aunt Susie, cousin, momma or friend had the same surgery, we need to talk! You didn’t tell me about a second surgery or even the paralysis in my foot! LOL!

Now that I am going back to the same hospital where I had my first surgery, I see this as an opportunity to make a few things right.
  • I will not be easily agitated as they have already labeled me. Jesus be a mouth controller.
  • I will not try to run away. Jesus be a bed chain!
  • I will not sneak in my electronic gadgets. Jesus, I really need you here.
  • I will be on time for my surgery. Jesus, be a clock.
  • I will not make the transporters wait to bring me to the surgery room until I upload my blog. Jesus, I’m gonna need help here too.
  • I will not flash everyone with my real estate while in my hospital gown. Jesus be a blanket. COVER ME!

Tomorrow’s surgery should last an hour (a lot less than my previous 7 hour surgery) and if all goes well I should be home by tomorrow evening.. Wow! I can’t believe this is happening. But you know what, WATCH GOD BE GOD! It may not be well with my circumstances. But it is well with my soul.

Thank you for your prayers

Monday, February 16, 2015

One Month Since Surgery!

After the 7 hour surgery in NICU
Yesterday was the one month anniversary of my brain surgery. What is there to celebrate? How about the fact that God was good before surgery and the fact that God is still good! How did I celebrate? --- In bed all day!! I'm still recovering, after all, I did have brain surgery a month ago.  #Tumor Humor

So how am I feeling after one month? Tired, fatigued, and exhausted, I taught a class last Thursday that left me tired for two days, but then stress has whipped me since Saturday. Lesson learned: I have to avoid situations that upset me. I am still having pains in the incision area where oozing began last week, but the pain is not as bad as it had been.

A few things I have learned during this past month:
  1. If I had not come face to face with the diagnosis of this tumor and the uncertainty of life, I would not have known how much I trust God.
  2. So many people really cared about me and really prayed for me. I’m grateful.
  3. If I hadn’t gotten ill I would not have found out that so many people love me and I have impacted many lives. When you are focused on serving people and serving the Lord, you don’t keep a tab on who you are blessing. I had never thought about it before, but the emails, texts, and private messages have blessed me in a great way and have opened my eyes to the fact that I have blessed many. No trophy or plaque could have brought this reality to my attention.
  4. A positive attitude will accelerate your healing process. My doctors, nurses and other medical team were marveled by my rapid progress. They attributed my progress to my attitude. My positive attitude comes from knowing the God I brag about. I know Him and I knew in death or life I am VICTORUOS! There was nothing to worry about.
  5. I always knew I had a good husband, however he keeps getting better, Although I have always though Earnest was good looking, I’m glad he has inward substance, A lot of people these days want a thug, or someone who has money or is a good looker. Be careful of looking for things that is shallow, because one day you may end up in the deep waters of illness and that shallow man may swim away and leave you out there with the sharks. My man is GOOD!
  6. I can still TEACH!!!! YAY!!!!

I made it a month. Still weak. Still have difficulty remembering. And I still walk with a walker. But still LOVING GOD! This has been for God's glory and it is still well with my soul!
Yes, my incision goes across my entire head.
I no longer have the hair that's on top od my head. LOL!

Friday, February 13, 2015

ABOUT LAST NIGHT..........

Last evening I completed an assignment as suggested by my therapist and doctor to test my endurance and stimulate brain activity. I was told to rest on Wednesday, stay in bed all day Thursday until time to dress and leave the house, and then rest all day Friday and do nothing. I followed those instructions to the letter because I was concerned that my assignment would greatly fatigue me. Well, I DID IT! I taught a counselors training class at my church. WOO-HOO!

I thought this assignment would help with my memory loss, but it showed me something even greater, and that is--- I CAN TEACH!!!! That is huge for me, because I love to teach! Although my husband was there to take over in the event my brain went mush, I was able to impart knowledge and answer questions, I spoke seated in a pub chair, and even was able to walk a few steps over to the dry erase board. YAY, I CAN TEACH!! And I looked pretty amazing in my “hide my balding area scarf.” LOL! God is awesome.

Admittingly, today I am tired. I am more tired that a 70 year old man with a jheri curl, mouth full of gold wearing a leisure suit in Wal-mart telling the women "Let me holler at you" but it is so worth it!  It’s a stay in the bed day. Yes, it’s worth it because last evening I discovered, I CAN TEACH!

My therapist is on his way over now so that he can do a day after evaluation. I know he is going to be pleased

Yesterday - 2/11/2015

I'm feeling better! See that smile----I'm not holding it up! My face has gotten some of its muscle
function back! The oozing from my incision has stop. There is still some pain, but not as bad. Tonight, I have a major assignment that my therapist and doctor recommended I do. I'll tell you about that tomorrow, but I'm excited!

Also, I appreciate all of your care. I really am getting rest and taking care of myself. When you have gone through 7 hours of surgery on your brain, you tend to follow doctors orders and rest. I am in the bed about 18 hours a day, therefore I am out of bed maybe 6 out of 24 hours a day. If I go out, I'm only gone 3-4 hours. I assure you all, I'm getting plenty rest.

I love you all! You have been a great support and encouraging to me.

Tuesday, February 10, 2015

Weekend Scare: Incision Problem!

I had a scary weekend.  Saturday, my incision, which is at least 6 inches long began to ooze. I also was having pain in the incision area. This is not good! We called everyone before calling the right person. Am I the only person who does that? LOL! For advice on what to do, I called my doctor friend, while Cat called my sister who is a nurse.  My doctor friend tried to calm me down (yes, I was pretty upset), and suggested I call my neurosurgeon. DUH, why didn’t I think of this? After talking with my surgeon who told me what to do to make sure that the wound had not opened and to treat it at home so that I would not have go to the hospital, I took a pain pill and went to sleep. I was a bit scared that something may be wrong.

Now, you super spiritual folks can hold on to the “God has not given you the spirit of fear” scripture. Ya’ll have misused that scripture for far too long. God gives us emotions, and one includes FEAR!!!!  If you open your front door and a strange man points a gun at you, I bet fear will hit you! The “Spirit of fear” is one that immobilizes you and causes you not to pursue dreams, act upon injustice, etc. There is a difference between “fear” and a “Spirit of fear.” And don’t act like you haven’t been fearful in your life. God already knows the truth about you. LOL!

Big Daddy and I in the neurosurgeon's
examination room
Anyhoo, I so very scared that I called ny doctor friend and texted her pics of my head. I am thankful for good friends who are patient with me when I go wacko. It doesn’t happen often, but when I do flip I, I deserve an award! LOL! An appointment was set up for today with my neurosurgeon. I was pretty nervous about this morning’s appointment. I’m calmer now that it is over, but HOUSTON, WE HAVE A PROBLEM! After the examination, the surgeon became very concerned about my incision. I was given instruction on how to care for it. I have to keep watch and make sure that the areas that oozed (it has stopped) does not open. If it opens we will really have a problem. I’m remaining positive. I still have a lot of pain in the areas of the incision that is causing problems. That’s not good either. I’m grateful for pain meds. My doc was excited about the movement in my “use to be paralyzed” foot. He really cares. He even gave me a hug to comfort me.
 
I’m not going to worry about this. I still trust God. I have a huge physical therapy assignment for Thursday, that I am really looking forward to conquer (details later).
 
This “setback” is just a part of my “Setup for my comeback.” It is well with my soul. God is being glorified!

Friday, February 6, 2015

It Ain't Over

It’s been several days  since I have written. I have been super busy with this healing process. The good news is I am getting better! YAY ME! I’m still somewhat weak and in recovery, but, under the therapist suggestions, I am acclimating myself back to normal. I have done things like cook, do laundry, and even went to Wal-Mart. Yes I had to ride the handi-mobile, but I did it while singing “Bad to the Bone” and “Born to Be Wild!” Don’t judge me!

What’s huge for me is the fact that I can walk and have movement in my toes! I use the walker when I am home alone or when I go out in public. There is a risk of me falling. But when someone is home, I walk without assistance. THANK YOU LORD!
 
Hair loss is even greater than before. I have a huge balding area at the top front of my head. This is a good excuse to buy more scarves, hats, & wigs. Currently I have a wig on to see how long I can have it on my head and if it will agitate my incision area.

It has taken me this long to share my diagnosis with you because yesterday, I finally got the concentration, and courage to read up on my illness. I was diagnosed with Granulomatous Disease or Neurosarcoidosis which is a rare disease that affects the central nervous system and /or cranial nerves. The disease is the reason behind the loss of muscle function to the left side of my face.  I must be treated for this disease. Some of the tumor is still taking residence on my brain. I will find out on Feb. 20th what method of treatment will be taken. So this journey is not quite over. But, through it all, IT IS WELL WITH MY SOUL!!! To God Be The Glory!


Me & Cat. Crooked Face, Crooked Tongue. LOL!
Yesterday, Cat came home in between her classes just to spend time with me. My ladybaby has been such a help and  blessing to me.  We took a few selfies and I discovered, if you have a crooked face, sticking your tongue out is going to be crooked too. LOL! TUMOR HUMOR!!

Tuesday, February 3, 2015

Before, During, and After Pics

Today’s  picture is of my facial changes before and after surgery. While in the hospital, I experienced a lot of swelling in my face, ankles and legs. 
Blueberry Girl

The doctor said swelling was normal because of all the fluids I was intaking intravenously. The medical staff didn’t seem alarmed. I didn’t care what the doctor had said, I got a little concerned when I started looking like the blueberry girl in the original “Willie Wonka and the Chocolate Factory.” I mean, exactly what quality of life will a blueberry Diva have? Also, "blue" doesn't match my personality! LOL! I remember saying to myself, “I survived brain surgery, but these folks are going to let me die with swelling.“  

The Swelling started on Jan. 18th, three days after surgery. By the next day, I look like I was married to Ike Turner. "Eat the cake Rolina Mae! Eat the cake!"

When I look at these pictures that are over a span of 3 weeks, I can’t help but sing, “Look where he’s brought me from.” I may not be where I should be, but thank God I’m not where I use to be. You feel me?