Walk for Lupus Now

So it has been a couple of days. There has been was delay as my world has been busy and I have been exceptionally tired the last 48 hours actually sleeping but it is time to say what needs to be said.

The walk was a success. Maybe we did not meet the goal that was established for us this year for our individual team but for the walk in total ... wow. Our success was $2,050. The Walk for Lupus Now success $104,506 and still counting.

Let me share from the website for the walk ...

"We soared past our goal of $100,000, with more than 1,400 walkers enjoying the sunshine and great new location and route. We will be counting Walk Day money and updating this site with the total and posting all walk photos next week. Don't stop the momentum...fund raising continues until May 31st, when the FINAL official total announcement will be made! Thank you all for making it such a special day."

As you can see there is still time for more funds to come in. The route was great. The location was great. The weather was gorgeous.

Kelly and Kerri flew in for Sarah from the east coast and my mum and brother got up at 3:30 to make the 4.5 hour drive up to then walk 3.2 miles. There was so much love in our little group that it did not matter that we did not have team shirts, that we did not make our team goal of $3,000, that many who wanted to be there could not be there due to obligations outside of their control ... it is OK as they were there in spirit.

Honestly we were there for one person, well actually 2 as there is a little one inside waiting for a date in June to join this little band of people and who will need her mother for years to come. We were there for hope. For hope that research can provide some more answers, that research can provide more options, that research can provide potential medicines, that ultimately this research can heal this problem in the future. We were there for the purpose of striking a conversation with someone who does not know what Lupus is and may not be aware of how it can hamper a life forever. 

Thus we where successful no matter what the numbers may say. We came together to show love, we came together to show support, we came together because this is important to one in our world and thus becomes important to all of us.

She knows it. She understands that and she appreciates it.

So I close with a simple thank you for everyone who was able to support my friend in the success of this walk. Next year will be the fourth annual Walk for Lupus Now and I do not know where I will be, where many of us may be, but I know that I will endeavor to be there for my friend and those who support her.

Love, respect and hope to all of you.

Time to Repair!!!

Today was really an information gathering session. Dr. Malik is one of the junior partners at the Heart Center of North Texas and really good at what he does. I found out from Cynthia (his nurse for 22 years) that he is booked through December of this year and most of next year is filling up. They fly in from other states and one of his specialties is closing PFO’s.

But the discussions he and I had were intense. Some things became clear to me. I had been reading about this but it was not as clear as he made it. We all develop little clots and such when we bruise or hurt our body. These clots are little and travel through the venous system, the blood going back to the heart. This enters the right chambers and is then pushed through the lungs. This serves two purposes. One is to apply the necessary oxygen to the hemoglobin in the red blood cells. The other is the lungs act as a filter. The filter the dust and such that we breathe in and they filter these little blood clots. The clean air returns to the left chambers of the heart where it travels out to supply the body and brain with oxygen.

Now a PFO that does not close after birth sits there as a little potential short cut from the right side to the left side of the heart bypassing the lungs. This can happen when we sneeze, when we cough, when we strain while sitting on the loo and what I just found out…when we have sleep apnea.

When I stop breathing at night my heart jumps when my body is forced to wake up and take a deep breath. This is the prime opportunity for that clot to move over from one side to the other. Then a TIA or stroke occurs.

I found him to be a very knowledgeable man speaking on both a high intellectual level and knowing that I was understanding this, then also dropping into layman’s terms easily when he could tell I was struggling with a concept.

He was rather interested in how the stroke happened, what symptoms I had and then did some physical examination and had me do some tests that seemed to be more neurological. The first things he said after the examination was that my breath and heart sounds were good. That my neurological disorders were still a little off but mostly normal, that I probably was having issues with numbers, that I was probably still having issues getting the message across and was jumbling up sentences. Sorry but WTF.

I have not really discussed with many that my brother is dealing with my finances as I just cannot deal with it. I had to ask the apartment manager how much my check needed to be written for as I cannot remember numbers. There were no sentences I had to write on the 8 pages of documentation I had to fill in and well he even knew that my short term memory was still a little off. Can I be Hurley here…Dude this guy was kinda creeping me out a little bit. But on the flip side I was impressed.

Good news is he believes that I will gain full functionality back as I am young. Then he dropped the bombshell on me that I have been skirting with avoiding. “Philip, you can keep taking the aggrenox for the rest of your life and not have the surgery but it is not a matter of if you will have another stroke it is a matter of when you will have another stroke if we confirm there is a hole in your heart.”

I know that is the case. I have not wanted to face that reality but it is true. So I have to make a decision. I have to make the decision. I have to make a decision about my life. I know there are lots of factors that have contributed to me being where I am today and most of them are of my own making. I did not take the weight off seriously. I procrastinated. I did not pursue the sleep apnea in Maui. I have made choices that I can change and work on now. I have time. But I cannot do anything about a hole between the right and left chambers of my heart and my body has already suffered. The organ that I need to live and live at the level of intelligence that I want to live at has suffered.

There is no one to make this decision for me. As terrified as I am of having someone invade my heart the prospect without this invasion is just as chilling.

I have to make a decision.

TEE is on the 11th – I go in at 9 and the process starts at 11 am.

Closing the hole in my heart (if the TEE confirms that) is scheduled for the 19th. I go in at 9 am, procedure at 11 – takes about 1-2 hours. Actual process is about 15 minutes long. I will be under anesthesia as they will have the ultrasound scope down my throat as well as going into my heart. I will stay overnight in the hospital and come home on the 20th.

I have made my decision. (my hand trembled when typing that last paragraph but my inner mind lets me know that it is right)

Plans change for the month of June but that is alright. We have to adjust as the world around us adjusts.

I have a direction and that direction is forward.

REPAIR, LEARN and most importantly LIVE

What was I thinking

By the way that is the salad plate I am using in those meals taken at home. The dinner plate is lovely and maybe when I have more direction as to what I should be eating I will cook and show those.

I am feeling a little down today. Not feeling great and just trying to figure out if I am doing the right thing. I am sure many people go through this about if their changes mean anything. It is just an off day for me. Trying to find my focus and it is not quite there today.

Why I started this blog.

Why is this here? Essentially it is the beginning of the new me. What has to change in me to make things right. To understand where I am now lets back up a month or two.

Feb 14th weekend. My brother brings his three children for the weekend and two were on antibiotics getting over the wonderful crud.

Feb 16th. I finish what I had started in 1987. I almost finished college then but life got in the way. In 2006 I went back to school and graduated with a Bachelors in Information Systems/Visual Communication. This was the day I graduated.

Feb 19th. Start feeling not so hot. Write it off as the kids gave me something.

March 3rd. Still cannot beat it and go to the doctor. I have been noticing balance issues and when there find that I cannot sign in correctly.

March 5th. After being lectured by my doctor and am now on steroids for an inner ear infection I get chills and pains in chest and left arm at work. I go to the ER that evening.

March 6th. I am kept overnight for observations and instead of being released in the morning they rush me in to cath lab as there is an issue with some of the markers in my cardiac enzymes and they need to see why and fix. I freak...see the end coming and they put me out. They find nothing. My friend Sarah (my angel) can tell you what they said I do not remember much.

March 7-8th. Home with family and friends - not allowed to do much. Sleep a lot. Not allowed to drive. Go to church on the 8th and it is hard to move.

March 9th. When driving to work I keep drifting to the right. I used the wall in the parking garage to find the stopping point. I am scared.

March 10th. Get my doctor to get the results. Go back. He thinks I am depressed maybe even suicidal. Puts me on meds. I go home thinking this is not right.

March 11th. I have taken notes of everything that is wrong with me. I do not have control over my right arm and leg correctly. I have not lost any strength in either but I cannot seem to get them to go correctly. I cannot type correctly - I think but the thoughts are not going to my fingers mostly the right hand. I cannot pick up a glass of water in the right hand. I drop things in the right hand. I am having difficulty driving. I am having to repeat myself and feel as if I am always drooling out of the right side of my mouth. Most apparent is that I cannot write any more. I am right handed. I call my doctor and tell him to listen to me. I am clear and precise in my wording to him as I have already decided that if he did not listen to me then I would get someone who would. He listened...and was concerned. He set up an MRI for my head.

March 13th. I have the MRI done. My veins collapse and I have to wait 2 hours and drink lots to have the last 15 minutes done. This means 3 pills - happy pills that day as I am claustrophobic.

March 16th. My doctor calls me at work and calmly states that I have had a stroke like event on the left side of my brain that accounts for the errors with the right side of my body. He is prescribing Plavix and needs to schedule an appointment for the neurologist and a ultrasound of my carotid arteries.

March 18th. I am at a sleep doctors offices as they think I have sleep apnea. Schedule a sleep clinic visit for the 23rd.

March 23rd. My life has been on hold now since the 16th. Go in for the sleep clinic. It is horrible...I hate having 28 things attached to my head and body. But I have got to do this.

March 24th. Wake up from the sleep study and go to my doctor. I corner him again as I want to know did I have a "stroke like event" or a "stroke". He confirms my worst fear. I had a stroke. I then go for the ultrasound. That was cool. Rachel showed me everything and let me see different angles. She said it looked good but I had to wait for the official all clear.

March 25th. Got the official all clear on the carotid ultrasound. Also started a new blood pressure medicine. I had not been happy with my BP since the 3rd and finally we were doing something about it.

March 31st. My neurologist. Been doing this for 40 years - only one room in the back - waited for 2 hours. Understand why. Each person has a set of questions that are different. Another MA took a lot of information and my films before I went in. Finally I was called back. I walked in, was greeted and then he began. "Well it looks like you had a major stroke" BAM! I know from what I read that this guy had not a lick of bedside manner and I was fine with that as he is the head of the best stroke center around. But this was news to me. I must of looked shocked. He wondered if I knew. I told him that most people have down played that and I started to ask him questions. He realized that I was not a child but was an equal and we got along fine from then. He took me and showed me all my films, he tested me, he told me what I need to know and confirmed a stroke in the thalamus region of the brain close to the spinal cord is what I had. Gave me information that I will go into later and sent me out with a book to buy and green tea to drink, plus something to help me get to my future ... a drug and a direction.

April 2nd. I begin to live my life for me. I have been in a dungeon for almost a month and am finally climbing out.

April 3rd. I see my sleep doctor who confirms what I knew already. I stopped breathing an average of 69.5 times an hour. I have severe sleep apnea and we need to see if a cpap (that Darth Vader mask) will help. Should be interesting but that is what I got to do.

April 3rd. I call a dietician and ask for help. I get the paperwork from her on Tuesday.

April 3rd. I start a 6 week elearning course on gratitude and changing the way I think about the world.

April 4th. I buy Ultraprevention as that was the book my neurologist gave me. I sit there with a green tea latte non-fat milk and read about a 3rd of the book. If I had not been scared silly before I was now. But I had a pathway to get out of this.

One of the last things I read was that it is the hardest for a person to take one hour out of the day and do nothing. So today I went to the park and for 15 minutes took pictures. Then after grabbing my blanket out of the car for the family that I was next to me with a baby I just sat there for an hour, also used my bag as a pillow for some of it, and just watched the world go on around me. It was nice.

I came home this evening and eat one of my post stroke meals. I then decided to delete my poetry blog as it was dark and the last one I posted on the 20th of Feb was foreshadowing what I have just been through...I saw that last night and thought I should do away with this. Today I did.

I now want to keep a journal that will be the repair, learning and living process. I am doing nothing fancy with this blog. It is just me. There may be typos but most I will let stand as I am recovering. Daily I get stronger. I am grateful for every breath and I have aways still to go.

On the 14th I have two heart procedures, then a follow up MRI and another visit with my neurologist. I also will met with the dietitian, get fitted for my cpap and continue reading and learning. I will share with you.