View Full Version : Update from Rob
I'm doing OK. I have the MRI tomorrow. So far, there have been no findings that indicate anything other than MS. My MRI is tomorrow, and that will shed more light on the situation. The fact of the matter is, I have definite Central Nervous System involvement from something. At this point it's just a matter of figuring out what it is. Hopefully that will be fairly quick. My SLE diagnosis was rather quick, and cut and dry 4 years ago. I hope this is the same so I can just get on with whatever it is I need to do to deal with it. The past couple of days have been dominated by anger. I didn't want to come here and have any of it spill over onto you guys. You guys mean alot to me. You mean more than just alot. I spent some time outdoors (the weather is really nice now), and did some stuff with my father, and I'm OK. Him and I spent a few hours doing a little target shooting at the range, something we haven't done together in years. Wore my big boonie hat, and a gallon of SPF50, and did ok. I was talking to my father about all the happenings of the last few years. About my business. He reminded me that I was indeed a success, my ideas worked, and I had made it. I just didn't have much time to savor or enjoy it. He reminded me that "It's better to be a has been, than a never-was". he always manages to say the right thing, and get a laugh out of me. Anyway, I need to get caught up here, and see how all of you are doing. Thank you everyone for all your friendship, and support. When I logged in today, the well wishes I read mixed beautifully with my fathers words, and let me know that people care.
04-10-2008, 03:52 PM
It's a guilty pleasure, but I must say I do love the smell of gun powder. I used to target shoot with a 22 rifle. I was quite good too. Don't think I'd do so well now though lol.
We have shoulders that are here for ya Rob. Vent sulk what ever you need. We all need some time to cool our jets and regroup every once in a while, that's okay.
Good luck tomorrow, it's probably going to be a long day for you. Keep us posted :)
04-11-2008, 11:04 AM
Mixed emotions: I am happy that you and your father were able to spend some time together and that his words of encouragement were helpful to you. I am sorry to hear that you felt that you had to deal with your anger alone :cry: As I've said many times, we are here for you through good and bad! You can come to us and vent you anger whenever you need to, believe me, we all will understand! Our only goal is to be here for you whenever you need us, for whatever reason you need us and for as long as you need us!
I'm glad that you're back and I am hoping and praying, like you, that you get an answer quickly so that you can get treatment quickly and be able to move on!
Remember....you are not alone!
Peace and Blessings
I just got back from the hospital and wanted to fill you all in. The MRI I had today showed three distict lesions in the brain. With my multiple CNS problems like the optic neuritis, my prior medical history, and this MRI, I do meet the diagnostic criteria for MS. I will be going back on Monday for more tests. At this point, the results of testng spinal fluid for abnormalities is not necessary, so I opted to not do it. The tests on Monday will be quite extensive, and will take most of the day. Mostly non-invasive nerve/electrical signal tests to see how bad my wires are crossed. I need to start learning the in's and out's of having SLE and MS together. The Neurologist is suggesting I undergo an IV methylprednisone treatment. We'll discuss that on Monday. The Neuro and the staff at the hospital were all very helpful, and the Neuro pulled no punches, and was straight with me. I appreciated that very much. I wish I could find a Rhemo like that. So, not exactly good news, but much of my fear of the unknown has gone away. It's that double-edged sword so many of us have experienced. I hate the news, but I'm also relieved. All the friendship and support here has helped in so many ways. Thanks again everyone. These past few days I've been thinking alot about the lyrics of one of my favorite songs. Here's a few lines...
Have you noticed that an angry man, can only get so far
Until he reconciles the way he thinks things ought to be,
with the way things are
For every moment of joy, every hour of fear
For every winding road, that brought me here
For every breath, for every day of living, this is my Thanksgiving
For everyone who helped me start,
and for everything that broke my heart
For every breath, for every day of living, this is my Thanksgiving.
The song is called My Thanksgiving by Don Henley. It's all about taking the good with the bad, and is one of my favorite songs. Thanks for all your support everyone.
04-11-2008, 01:27 PM
Rob, Rob..What does one say to that...sorry seems so simple. And a cheery hopeful sentences seems too fake.
The good, the bad, the ugly..it is life coming at us. It is what we do with each. I am happy you are staying on the positive, upbeat path...and if you find yourself on another road with so many mixed negative emotions, angry, sad, lost...please share...
Sometimes when we are so upbeat we are afraid to post the negative, afraid to seem we are false, or afraid we will weaken another's hopes. I hope you never feel that way Rob. Not even a Super Hero is a hero everyday...
Prayers, I have many for you...even if one doesn't believe, or maybe, but not...my prayers will still be said for you. God is there for everyone, regardless.
Big head hug.
In God's name I pray..
Dear Heavenly Father, I ask please look after Rob, carry and lift him to wellness. Let him pass the ailments unharmed that plagues him. He too is a child of You, regardless of his beliefs, how little or how much. Shine on him, show him the truth and protect him from this illness.
He loves the world You have created. The rivers, the animals...the outdoors, the ocean, the fish...and all its beauty and treats it with great respect. He too is apart of that beauty. Inside and out.
So, please hear my prayer to You. Please seem him through this passage. Thank You Dear God Almighty. Amen.
04-11-2008, 01:41 PM
There is not much that I can add to beautiful sentiments and prayer that Oluwa gave you. I love the words to "My Thanksgiving" and I think that holding in your heart is doing good things for you. Again, your report is met with mixed emotions, but as you said, finally having an answer (any answer) relieves some of the stress and fear. Thank you for being willing to share with us and allowing us to be there for you. You know that we all wish that you did not have to deal with this issue (we all wish that none of us had to deal with our issues), but we are here for each other. If that means that we can do no more than hold you up in prayer, know that we are doing just that!
Peace and Blessings
04-11-2008, 02:46 PM
Rob, my heart aches for you - that's enormous news to grasp. You have such a good outlook; are taking this with such a wise perspective. But don't be 'brave' for us....if it hurts, if it makes you angry, listen to what Oluwa and Saysusie shared: it's ok to come here and vent. We all deal with hard things - some much more than others - but everyone here has broad shoulders. Use them as you need them. I join in Oluwa's prayer for you, Rob. Keep us up to date on the tests and how you're doing.
04-11-2008, 03:24 PM
I'm proud of ya. I know there's going to be times when your spirit slips and you dont feel all that strong. We are all here for you to lean on and let some steam off.
Glad you can give the spinal tap a miss. I hear it's not pleasant. How did you make out during the MRI? I hear it can be very nerve wracking.
04-11-2008, 04:14 PM
I have started and stopped this reply to your post several times, searching desperately for the right words of comfort and strength. I realized, as I struggled here, that you have both comfort here and strength within. I believe you will face this challenge with courage and grace. And in doing so, you will be healed.
Such is my prayer for you today.
Good morning all!
I don't know how to thank you all. Oluwa, your words, and your prayer, are simply beautiful. Saysusie, you are like a rock to so many here, including me. SITC, your humor and friendship always make me happy to hear from you, besides, we are practically neighbors, except for that bit of water separating us! Jana, you don't need to slave over this word or that, your kindness and support shine through no matter what. Jody, you are another "rock" here. Your presense here brings a sense of normalcy, and with that comes comfort. To everyone who I didn't mention by name, please know I read all your words, sometimes many times over, and always find strength in those words. Many of you know that I consider myself agonstic. But I have to say, the prayers I read here do bring me comfort. Maybe there is something out there. I can't help but think of that old saying "There are no Athiest's in Foxholes". Thank you for all your prayers. I have a feeling of clarity and resolve this morning. I know there are plenty of challenges, and pain ahead, but I'm not afraid. Thank you all.
04-12-2008, 10:47 AM
Well heres my motto (modified for your beliefs :D ) The greater being will never give you more than you can handle. :D
No modification needed Jesseyleigh. I read about your work situation, congratulations! Your job sounds pretty interesting. As for my beliefs, I'm sort stuck in an odd spot. I don't know what to believe, but I want very much to believe in something. I see people with strong faith in their religion, and I see the peace and comfort it brings people. I want to have that too, I always have. Maybe I think too much, I've always wanted "proof" of things in my life. But faith requires no proof I guess. Anyway, I appreciate all the prayers said here, and there's no need to change a single word. I've changed alot over the past few years. Learned alot of things I never thought about before. Maybe I can find the love of God too. So thank you all for your prayers.
04-12-2008, 11:59 AM
My favorit prayer is the serenity prayer:
God give the serenity to accept the things I can not change
The courage to change the things I can
And the wisdom to know the difference.
Or the modified version:
God give me chocolate wallnut brownie
The appitite to enjoy the brownie
And the glass of milk to wash the brownie down with.
04-12-2008, 03:11 PM
OOO i like the modified version, i keep the footprints poem on my medicine cabinet in my bathroom i find when things get bad i read that and it helps me to feel a lot better
sick n tired
04-12-2008, 10:29 PM
I have been away from the computer and have just read the diagnosis. Like Pearl(Jana) I also have been searching for the right thing to say. I to see that it is almost a relief to have a diagnosis. Sometimes the fear of the unknown is better that the thing itself.
I will be praying for strength for you...Like so many others have said before me...we are here and you can vent away if need be.........
I really love that song...that is how I feel mostly about life...even though it is talking about a man...I am able to take what is thrown at me better when I have reconciled myself to it and can think about a plan of action. Doesn't mean that we will be happy or glad of the situation.
My beloved Papaw used to say, When you have something distastful to do, well then Karen, there is no time like the present...You just bow your head and get going"
May the Lord help you feel his strength. For he has said, "In our weakness, He makes us strong" I have felt that strength and His peace that passes all understanding...It is a calm feeling of peace even though all he11 is breaking loose around you.....The day Nadia went to surgery, that is where I was...
I will and have been praying for you, Rob.
04-12-2008, 11:14 PM
Every day when i wake up and get out of bed and decide do i go to work or do i call in sick, i feel awful i realize im out of bed and read this poem on those mornings i hope it brings you the inspiration that it brings me:
One night I dreamed I was walking along the beach with the Lord.
Many scenes from my life flashed across the sky.
In each scene I noticed footprints in the sand.
Sometimes there were two sets of footprints,
other times there were one set of footprints.
This bothered me because I noticed
that during the low periods of my life,
when I was suffering from
anguish, sorrow or defeat,
I could see only one set of footprints.
So I said to the Lord,
"You promised me Lord,
that if I followed you,
you would walk with me always.
But I have noticed that during
the most trying periods of my life
there have only been one
set of footprints in the sand.
Why, when I needed you most,
you have not been there for me?"
The Lord replied,
"The times when you have
seen only one set of footprints in the sand,
is when I carried you."
04-13-2008, 10:49 AM
That poem actually got me through a lot of sad moments after the death of my daughter! She often read it to give herself strength. Thank you for sharing it with us and reminding me of it again.
Peace and Blessings
04-13-2008, 12:05 PM
I've been away from home for a couple of days and have just returned to read your news. I am soooo sorry! It just doesn't seem enough to say that!
You're in my thoughts and prayers.
04-13-2008, 12:23 PM
I've been unable to be on the board much lately, so had missed all this.
What can I say other than my heart goes out to you - I send thoughts of strength and health to you. Oluwa and others are so eloquent, all I can do is echo. I'm glad you're part of this group - that we can support you in times like this, and know that you're there for each of us as well. Community is a powerful thing.
Many cyber-hugs as well.