Stuff.... Friends, who are they? Are you changing?

If you met anyone you call a friend for the first time today, would you still say we are friends? Friendships roll like the tide. High times and low times the best stay strong, like a well built pier. Some on the other fade or slowly fall apart. Generally brought on by one or the other changing in some way. My disease has cost me many material things but it has shown me what true friends are and what they do. My father once told me friends to a man cause trouble, stay away be a loner. I did this mainly my entire life. As I grew older, got married my views changed and my relationship with dear old dad bottomed out. However, I started seeing people (both sexes) in friendly terms. When I really bring you into my family and friend become like family  I hold you to a higher standard. For many folks in my inner circle it has worked fine. Some just cannot handle it. Do I love to hard? I love my friends, I love my family, I love with it all. In 9 out of 10 times I will do anything I can to help a friend. The 1 time will be the time my family is in great need. 

Yesterday I lost someone I considered to be a great if not best friend. I guess my standards were to great. My fault? Maybe it was. Perhaps it was a bit of both. He is in deep and over extended. I understand and wanted to help but he did not want it. Fine. I needed something from him, he could not give the time. Even when I and my family thought I was on deaths door he was aloof. Time was ticking on the friendship. It ended, because of this blog. I started this for a few reason. To help others, express my thoughts, and to keep my friends up to date on me and my condition. I got very tired of texting and reciting the same version of me over and over. Now I write it, post the link, and it makes it easier for all.

The friend I lost, I do not think I would befriend him today if we just met. The pier broke. The tide washed away a lot this time. It was a fond time in my life but my life has changed and so has his. It happens and it's cool. It will hurt for a bit and then fade away like a beautiful sunset or a melting snow. The age/generation gap was wide, early 30's and early to mid 20's are 2 different times of life. I look around and that is the only person in my circle that I without a doubt would not approach in a friendship matter. I have changed as a man. People change and grow, I know I have. Have you?

Things I have learned and going with Black and Gold for Wake Forest

You know that feeling you get after your first hard workout in a long time? Not the rush but the feeling the next day or 8 hours after, the aches, maybe a little fever, headaches, sometimes even nausea. After that hard exercise protein builds up to repair the the body. It goes away in time and you resume normal life. Not me.  The protein in my body is high so I feel that way always just worse. Talking about a pain level of 7-10 depending on the day.Thats me everyday. So now I know why I feel this way, the scary part is what this build up of protein can do to the body over time. The one that gets me is the protein can settle into any organ. This causes enlargement of said organ, examples liver,spleen,heart, or just veins and arteries. The organ invasion can set off a whole list of body functions that can result in cancers and leukemia's . I do not want those! The excess CSF protein can cause increased pressure in my brain. For you non medical people thats bad. It can also cause meningitis. Thats a  not want as well. A few posts ago I talked about my eye. Chances are the protein caused that. This increase can clog up veins and arteries and then they rupture and I go blind again or worse depending on the vein or artery. Alzheimer's and Parkinson's are possible as time ticks.

This high protein level is also in cahoots with inflammation in my body. My nerve biopsy showed inflamed nerve fibers and blood vessels. So this can lead to RA or other inflammatory diseases. Mixed connective tissue disorder, which my mom has, is one. It kind of gives of highlights of all the autoimmune disorders. Lupus is also on the table. The SLE version not the skin version. In fact that might just be the leader of the pack of what can happen to Ben list. 

Freaked out yet friends? Huh, are ya? I am! My MD at Mayo said, don't chase it. It will declare itself one day or maybe this is it. Only time will tell. Live your life try and get some enjoyment back. Use what you need to be a person, pills, cane, rest but try and live. This is gonna be hard but I will try, one day it may say hey I am now Parkinson's disease . Then I will have wished I would have fought through the pain to go outside and watch Reagan play.

Amazing what the chains that hold the body together can do when chronically high. We all have protein and it comes in many forms albumin and other good stuff. I say to you all stop now and tell your body, "Hey be normal! Causes Snitches get stitches! And so do inflamed bodies"   Later!
                                                                                                                                 

Day 3 and 4

Day 3- at 6am I was scheduled for a MRI. A thunder storm knocked out power to all but 1 scanner. So delay was the name of  the game. So as the thunder passed cold pushed in and I mean cold! From 60 to 33 by the end of my day. AFter the MRI I had a LP at a different hospital campus. So a 10 minute bus ride and time for a stabbing to my spine. That is done and back on the bus back to Mayo main for sensory test. I was burned and frozen on the foot and leg. I failed. 97% of people have better feeling/sense of heat and cold to the lower limbs than me.Next, a visual field test. I stare at a light and click a button any time I see a light flash. I generally fail this as well, my perphial vision blows. AHH! DONE! Then out into the cold and back to hotel. I am bushed,beat,whipped,etc......

Day 4- Starts with MD return visit at 810. He runs 30 minutes behind and I get no TRUE diagnosis. I do get this, I have too much protein in my body. Blood and CSF, this leads to the joint pain and eye junk. The protein can build up in veins, arteries, and joints. All 3 blow and I live in pain. Also, inflammation is a constant. It shows in my eye, showed in my nerve biopsy and now in my csf. This inflammation can be a precussor to autoimmune disease. I basically have it just without a real name. So in summation, autoimmune diseases without a name. The inflammation and high protein are signs of this. The disease has not entirely showed its ugly face. It may never, I may stay right where I am until I die. Then again it may roll into a mixed connecive tissue disorder type thing. Oddly enough the inflammation and protein live in my connective tissue. So, I head home Sunday with many more puzzle pieces but it is still not finished.

MAYO Day 2

Today was a brain buster. I was ringed out today. I started with a neuro-opthamologist who told me things NO doctor has ever told me. She looked pics of my eye from 2006 and told us stuff no other medical professional has even thought to say. After that and looking at my eye she thinks for sure its an inflammatory process. Also, my blood protein is running high and certain RBC and WBC markers are out of wack. This can be a sign of MLL. That is a type of leukemia. That floored me! I also had a MRI of brain today, a new non FDA approved MRI. The scan looked different from my older scans. I also had some odd sweat and heart test. It was for small nerve fiber neuropathies. I cannot describe it today my brain is WAY too maxed. Maybe tomorrow or the weekend I can give a summation.

I mentioned an EEG yesterday, that is when I am shocked in certain spots and measured to see the nerve response. It also has a needle portion. The needle is inserted into my muscles at many different spots and I have to relax or flex the muscle. That was done on left side from my foot to my upper back. The back needle was painful. I may end up staying next week for residual test and a hematology(blood doctor) consult.

On a fun note, this city reminds of Racoon City from Resident Evil. It all revolves around the Mayo Clinic as opposed to Umbrella and no zombies just sickly people.

Day 1

Well, this place is not home. Western NC is far far away, being this near to Canada is strange. Today I saw a world renowned doctor, DR. Dyck. He did my exam with his Fellow Dr something . I never did undrstand his name. The accent up here is very diferent, but I have met at least 5 people that have lived in Nc at some point. I had another emg test today and blood draws. Tomorrow I have some tests I have never had or even heard of, the fun starts at 8 am. Not surprising to me, MS has showed its face again. I see the Mayo MS doctor later this week. If its MS..... well... I'll be vindicated.

This hospital is AMAZING! It is a smooth straight line machine. Not to mention it holds like 2000+ beds. The hospital has great architecture and everyone is so helpful. They all speak like the people in the film Fargo. There are more than just the Mayo Clinic. The system is many hospitals all connected by subways and skywalks, but under the banner of Mayo. After the first appointment you get a list of your schedule and depending upon your disease process and doctor type it can take a week to 2 weeks. OKay, until tomorrow.

Touching base

Next week it all starts. Monday I head out to the Mayo Clinic in COLD Minnesota. I intend to blog each night and give updates on what has occurred. This week I am just taking it easy and trying to rest up for my medical marathon. For those of you who do not know, I will give a brief synopsis of disease now!

Last July I developed a pain in my lower back. It continued to get worse, nothing helped. By the time I went to the doctor my legs were numb and my feet felt dead. At first a herniated disk seemed to be the answer. Well, a mri later and no! Pain got worse and so did I. My legs began to shake uncontrollably and my ability to walk diminished greatly. I needed help doing anything upright. Then it happened, severe pain. I mean crying pain. I could no longer get up or down unassisted. My shaking was non stop, myoclonic jerks became full body. I was admitted to the hospital overnight, they had no idea what was wrong. They suggested Duke or wait it out. Well, Duke was never my top 5 choice for a diagnostic facility. As I stated in a post some time back Mayo was always my top go to and I should have done it way back in 2006. So, I waxed and waned. Saw many doctors of many disciplines. Many tests later, I had elevated protein in my CSF and lymphocytes in places they did not belong. That result came from a muscle and nerve biopsy. My blood work started trending, wbc and rbc inconsistencies. The disease continues to flare off and on, I was even in a wheelchair for a week or 2. My newest symptoms are sores on my body that ooze/bleed and do not heal. Giant knots on my finger joints and worsening eye issues. 

So there it is a very brief run down of the past year of my life as sick man. More to come folks.... stay tuned.

Friends and Ancestors

* Let us take the 2nd one first, ancestors. I just returned from a friendly voyage to Cherokee,NC. It was a field trip/ vacation with my family before I go to Mayo. My family tree has a good bit of Cherokee in it, it just happens to be the side I dislike. HAHA! I found it so interesting seeing and watching the people teach, dance,and work with the old tools. I urge anyone of any ethnicity to go see this beautiful place. It made me want to look into my Cherokee heritage and discover which clan I belong. I wish we still lived the ways of the pioneers. However, in my condition I would be picked off by a bear while my tribal friends escaped to dance a dance for me. My Facebook page contains the dance to which  I am referring. 

* Friends..... what does that word mean to you? To me I see peoples faces when I define friends. My wife,Amelia, even though she criticizes my blog and the way I write it. She has stood by me throughout this disease. Donna, the woman who was there for me at work more than anyone else. My preceptor,teacher,spiritual adviser...friend. Kim and Jamie, they organized PTO donation and money donation for me after I got sick. Both showed me the ropes at the Children's hospital and both remain friends. Justin, who just today said he would make sure my vent was managed properly should something require him to, you know neurological diseases can have influence on respiratory muscles. James, my red head little brother. We are of no relation but I see much of me in him. Picked from the same tree I guess, his branch was just lower than mine.HAHA! Our crude texts and jabs are sometimes just what I needed. I have many others that could be placed here but these just popped out at me today. Sometimes a friend is not even someone you know very well, they can be strangers. By that I mean anyone can make you feel loved and put a smile on your face. Friend.

I changed the font color. Amelia said the other color hurt her eyes. Let me know if this is any better?

Have you ever been blind?

In 2006 I was legally blind in my left eye. That was the beginning of my disease process. Over a 2 week period I went from 20/20 with glasses to 20/300 with glasses. That just sucked! In those first few days when I was blind I spent every minute taking in all sights I could. Well that is while I was not in a doctor office. During this process I argued and manage to piss off the entire MD staff of a Medical School.... hint... starts with Wake. =)
At that point I was going to go to a MAJOR medical program not some pseudo wanna be in NC. My primary eye physician gave me major steroids. 100mg p.o. daily for 4 months. I then weaned to 0 over the next 2 months. My vision corrected but certain anomalies stayed. These are to medical profound to go into here but my vision has never been "normal". Over the next many years I had recurring bouts of "optic neuritis", some required steroids while some just went away. During this time of my life I began to think I may have an autoimmune disease. This is the case today, I am battling an autoimmune disorder/disease. My current stable of doctors say optic neuritis is too simple of a diagnosis. In 2 weeks I head to Minnesota to the Mayo Clinic. I should have done this 6 years ago but my mind and pride would not let me. Perhaps it was fear and not pride, I am full of fear concerning this upcoming pilgrimage. I am full of what ifs. Scared am I, a 6 foot 200lb man afraid of a trip that most possibly will give me much needed answers. My loving wife says to stay positive and not let the negative thoughts cloud my brain. I say, easier said than done.