My life with Multiple Sclerosis
The trials, hardships, successes and the need to persevere on with MS.
Wednesday, January 1, 2014
January 2014 New year!
First happy new year to everyone!!
I have officially started the doctor change over to TN from NC. Met with a new neuro on the 30th. His name is Dr. Trudell in Knoxville. I have to say he seems like a real good guy with a great sense of humor. Good listener, open discussions (on anything). Definitely NOT a number here are your meds type that we MS’rs are all to familiar with.
My goal is to get back to an interventional radiologist to have a follow up ultrasound and see where I am at with my CCSVI surgery. 3 year anniversary coming up in February! In TN anyway it is the ladder method for docs. Referral here to see A, to get a referral over to B etc. etc. Why people can’t just go to who they want is beyond me. All in all Dr. Trudell is very cool guy. Even brought up LDN which almost made me fall of the table. Last time I was looking at LDNs it was an underground movement…lol. Marijuana came up too but I am not sure exactly his take on it. It’s not available medically in TN yet anyway.
So MRI on the 16th. With and without contrast as always. It appears 1:45 minutes in the tube with my hannibal head gear! Once that is complete I will move to the IR, ultrasound and probably have a blood panel pulled along with my B and D to see where my levels are. It’s been about 5 years so I guess it’s about time (you all know how I love doctors).
Forgot to mention the pain side of things. Appears my "issues" is what they call a sensory flare up. Pain meds as needed and wait for it to subside. As with these type of things no idea on how long it will be until its gone or if it will ever completely go away. It amazes me on how little "they" actually know or can do in this day and age.He is thinking it may have a spinal tie in of some sort. I did have one lesion in my spine so it’s possible it has gone active and is causing it. Will know more with the MRI.
The reemergence of the MRIs and testing have brought up all those thoughts again. Do I(you) want to know how many lesions there are, whats active, or the locations? Sorting through what could go wrong based on their locations. Being that there is really nothing anyone can do, I kind of think hell no. I did however decide to get the test. So I think I will go with do I have more? Any active? What is the active(s) possibly doing to me and leave the rest alone.
Perhaps I now have less and none are active. That would be awesome news!
More soon. Sorry, I took so long to update you all.
Thursday, October 17, 2013
Am thoughts
Am thoughts
Here I sit 4:30 am awakened to thoughts about my MS, my life, Anne, family and my future. It's been 2 years and 8 months since my CCSVI surgery. This period may be the best in my entire life. Free of symptoms and back into the world.
About two weeks ago I appear to have started to have some "issues" creep back into my life with MS. Why, the cause, another surgery, not again, is it all coming back, all thoughts racing around in my mind as I drink my coffee.
Yesterday Anne and I decided it was best to head back into doctor land and see what they have to say. First up, a follow up with an interventional radiologist. In order to do that I have to see a neuro first. To do that we need a referral etc. etc. So a new chapter begins. Where it all goes we will soon see. I will keep you updated as we go.
My am rant.
I have to say that I have completely lost my patience with people who are sick with something serious and choose to live in it. They drink, they smoke, they complain, they swim in it affecting everyone in their lives. Do they realize that? You know the people that could change something, do something and be better. The ones that seem to let pride, a closed mind and general stupidity stand in their way.
Hell, I use to be that guy. Guess what with the help of my awesome wife Anne I learned something. You know what I learned? Get off your ass. Learn, educate yourself on all options (outside your bubble) whatever they are. Grow, have an open mind, change the person you are. Don't live in it, don't be prideful, don't complain about it and don't support it. DO SOMETHING ABOUT IT!
Friday, September 13, 2013
Swank Supplement Packs
Well its been a while since I posted an update on how things are for me. Overall still doing very well. I will be posting a complete summer recap soon.
I did want to pass along this great product I ran across today. Not sure how I missed it earlier on. For anyone who takes supplements on a regular basis for their MS you need to look at these. Especially if you are a Swank diet follower!
SWANK DAILY AM/PM SUPPLEMENT PACKS, developed by two of Seattle’s leading naturopathic doctors focused on multiple sclerosis, contain all the essential nutritional components for those diagnosed with MS. Based on recent research, these twice-a-day packs can help to support the immune system and improve neurological function.
Each AM packet contains: Two multivitamins to improve overall immunity, B complex with metafolin to help with mitochondrial function and improve neurotransmitter production and last, an extremely high quality EPA fish oil capsule with the added benefit of vitamin D.
Each PM packet contains: Two additional multivitamins and a multi-strain probiotic to support the immune system and reduce autoimmune disease.
They can be ordered here. Enter the password SIMPHARMACY. Then click on the Swank Products Tab.
I did want to pass along this great product I ran across today. Not sure how I missed it earlier on. For anyone who takes supplements on a regular basis for their MS you need to look at these. Especially if you are a Swank diet follower!
SWANK DAILY AM/PM SUPPLEMENT PACKS, developed by two of Seattle’s leading naturopathic doctors focused on multiple sclerosis, contain all the essential nutritional components for those diagnosed with MS. Based on recent research, these twice-a-day packs can help to support the immune system and improve neurological function.
Each AM packet contains: Two multivitamins to improve overall immunity, B complex with metafolin to help with mitochondrial function and improve neurotransmitter production and last, an extremely high quality EPA fish oil capsule with the added benefit of vitamin D.
Each PM packet contains: Two additional multivitamins and a multi-strain probiotic to support the immune system and reduce autoimmune disease.
They can be ordered here. Enter the password SIMPHARMACY. Then click on the Swank Products Tab.
Sunday, March 3, 2013
Untangling CCSVI from MS: The Stories, The Science, and the Need for Action
Anyone that has MS, knows anyone or is a family member of an MS person please take the time to watch this video.
Untangling CCSVI from MS
Untangling CCSVI from MS
Monday, February 11, 2013
2 YEARS POST CCSVI!!!!!!!
2 years ago was the second time in my life where the disease Multiple Sclerosis changed everything I am. 2 years ago I went up to Albany N.Y., saw Dr. Siskin (best ever) and had my CCSVI procedure. This adventure into the unknown on February of 2011 gave me my life back.
I recently went back and read over all the things I had written the days and nights before my procedure. In reading things over I remember how bad my life was. How tough it must have been on my wife Anne, my friends and family every single day of my life.
Prior to my procedure I awoke each day to my daily self checks. What is happening in my body today? What will I be able to do? I would go over each symptom. #1 fatigue, how tired am I (before I get out of bed, if you missed this please read SPOONS)? #2 heat intolerance, is it going to be hot today and whats the A/C in the house set at? #3 cognitive issues, how clear can I think. Can I speak well without searching for that one word to complete a simple sentence? I remember my brain sometimes stopping for a couple seconds here and there with nothing. How is my optic neuritis, how well can I see out of my left eye today? Any soreness, cramping, numbness, shooting pains etc. etc.? Everyday, man it's been two years and I can remember it all like it was just yesterday.
I then read over the my blog post right after my procedure.
I sit here now writing this, free of all of it except my optic neuritis. We soon decided to move after my procedure to a home in TN. We found 6 acres right outside the Big South Fork state park (thanks Lindsey & Rick). It has everything we have always wanted, a great house, a garage with a workshop, a 4 stall aisle barn and quick access to miles and miles of trails for riding. All of this I am able to keep up with now. We even decided to handle the move ourselves. I packed, I drove, I unpacked, I ran the new fencing for the horses and I helped get the 6 acres in shape after we got there. I would have never been able to move here 2 years ago. 2 years ago I was only good for 3-4 hours each day at about 75%. Forget about horseback riding for 3-4 hours at a clip.
The last two years have been the best years in total I think I have ever had. Truly amazing how your life can change on a dime. Don't settle for being sick, fight on and keep searching you never know what might be right around the corner.
I have quite a few thanks to give for the last 4 and half years since my diagnosis of multiple sclerosis. First and for-most to my wife Anne. Without her I wouldn't be even close to where I am today. MS has been such a challenge for us and she has never even blinked. There are not enough words to express my thoughts. Thank you.
Thanks to my friends, family, and everyone that has helped me over the years on my journey with MS.
Thank you for all the great doctors I have had along the way. Dr.Diana Greene-Chandos, Dr. Michael Meehan, Dr. Abbas Qutab, Dr. Gary Siskin thank you all!
I have one special thanks to all my fellow MS'rs. Thank you for sharing your lives. Thank you for your personal and often times inspirational stories. Thank you for sharing your most inner thoughts and ideas about your life with MS. Don't ever stop!
My final thank you is for all those that supported and aided me in getting tested and treated for CCSVI!
Please if you haven't been tested for CCSVI do so. It could change your life!
PS: If anyone missed my CCSVI procedure day write up ( I still get questions about it..lol) its here
Wednesday, January 30, 2013
MS is a very personal journey. Respect it.
Well I have been away for some time. Thought it was time for a quick update.
I was stuck this am by how judgmental and hateful people can be in their ways. Especially when it comes to how they or the people they know choose to treat their MS. Here is a news flash there are a multitude of approaches to dealing with MS. There is no wrong way and there is no right way to treat it. Things have helped people and things have made people worse. What there is though is an individuals choice on how they choose to deal with Multiple Sclerosis coming into their life. It's very personal. They get as educated and learn as they want to. They choose their path. It's what they feel is in their best interest. It is their journey and their choice. This isn't something others should judge or belittle because it's different from their choice. Please respect how others choose to deal with their MS and treat everyone with the respect you think you deserve.
Rant over.
Stay well my friends. I will have a new update with all my MS stories since the last one soon.
Monday, May 7, 2012
My Book
Wanted to post a quick update to everyone as I haven't pasted in quite some time. I have been taking a break from writing online for the most part as I have started writing a book. The book is becoming a great experience. It was a little work getting educated on it all but now that I am organzied its flowing rather well. Thanks to those of you that have helped me get started. I plan on posting a paragraph or two from chapters as I finalize parts. A primer for those interested in the book :). So keep your eyes peeled in the weeks to come.
On the MS front all is going well. I have been walking a bit again to get myself back in shape from the down time after the move to Tennessee. We really took some time off after the move and have been concentrating on the new house and our work. I will point out thought that Anne and I have made sure to be riding fools here in the Big South Fork.
Speaking of the BSF and MS I am also working on putting together an annual MS/CCSVI walk an ride for this October. Once I get things nailed down a bit I will have a post on everything involved so you can all come join us and help raise some money for research and get things moving forward on CCSVI!
Wish everyone the best as they get their spring and summer going. More soon!
Wednesday, February 8, 2012
One year Post
Well here I sit almost one year to the day of my CCSVI surgery, fresh after a great birthday day with my wife. Horseback riding, hiking and enjoying the outdoors at our new home in Tennessee. Who would have thought this could be possible (even moving myself... WHAT?). What an awesome year!
In January of 2010 I got the call from the doctors. February 11th, 2011 my life would change yet again. This time for the better in ways I could never have imagined. Coincidently this came almost directly after being turned down to participate in the CCSVI trials in upstate NY. Things work out the way they do for a reason, somewhere somebody has a plan.
With the great support of my wife family and all my friends, off I went to Albany. The trip was a true life changer. Spending time with Mark and Pat, sorting through the changes was so cool. I remember the tooth brush incident like it was yesterday. If you missed my posts or wanted to read things again I am including the links here. CCSVI Treatment Day After....!!!!!!! Day 2 Quick update Plugged In! If you want to read more in-depth about my year there is a "Blog Achieve" on the right, just scroll down.
After my return, the journey back with my beat up body began, getting things back in shape and getting my body to match what I had in my head. No fog, clear thought, no fatigue…time to get my life back. My body would take more time but after 3+ years of doing absolutely nothing, it was to be expected. Walking, hiking, horseback riding, going to town wasn't a big deal anymore. I remember like it was yesterday, often calling my wife from town and saying I am coming back, I can't do anymore today (almost too out of it to drive home). I hated those days and I will never forget them (I don't think Anne will either).
The next big thing was nutrition. A few times I hadn't felt up to snuff, not tired or fatigued just off. Not healthy. After doing some research and talking to a few people I decided to go with an Isagenix program. I have lost over 30lbs and haven't felt better. Anne has had great success as well. Getting my nutrition in order was obviously the next step I needed to take. I won't go on about Isagenix and how great it is but if anyone is interested let me know.
This year we went to Boston for Christmas and MS never even came up. There was no worry about fatigue, it was gone. In fact, no one even asked me how was I doing. I went out walking in the park with everyone, I wasn't dogass tired at the 9:30pm movie on Christmas Eve. I was normal, myself. Truly a great way to end the year... with family, on a holiday, with no worries. I still shake my head when I look back on this year… wow.
There are several people I have gotten to know this year because of MS and CCSVI. Those that have had surgery have had great changes and some have had less. Everyone reads different. I am proud of all of you who got involved and took charge of your MS. Trying everyday to move ahead into making things better. Don't sit back, beaten down by this terrible disease. Anyone who gets down, (been there) it's understandable and expected. It's the coming back, the fighting, the looking ahead and striving to make tomorrow a better day that matters. If CCSVI is not an option for you, keep fighting, keep looking. Rely on YOURSELF. Do your OWN research. Do not simply listen to one or two neuros about what you should do. Talk to others that have MS. Find out what others with MS have done to better their lives. Keep an open mind and fight. If anyone needs to talk, please contact me. I am always around.
To everyone involved in my life, my wife (BIG), family, friends and my Facebook family thank you for the great year and all the support. You all have been amazing and a big part of this great year. Thank you all.
P.S. If you haven't been tested for CCSVI, do it yesterday.
Thursday, November 3, 2011
Helping others with MS.
Logan |
I know I mentioned on FB what I would be writing about this time but I have changed things up a bit.
I have had a lot of things running through my mind these past few weeks. I have been contacted by a few people about MS/CCSVI recently. Every time I hear someones story, I reflect on things, my life, what's happened to me and prepare to write back. It always seems new to some extent, a bit different. Everyones journey with MS is different and so personal. What we hear, read, learn, share is amazingly different yet similar. It's very important for people who are new to MS to reach out to others who have gone through what they are now taking on. It's also important for those in the journey to help others. One person wrote to me "It gives us some hope that he can live a somewhat normal life." There is hope, a lot of it! I along with many others are better now then we were even prior to our MS. I can't stress this enough talk to people, help them, support them, teach them, but never judge them on their journey. Everyones choices about MS need to be respected.
So, here I am November 3rd 2011 coming up on my 9 month post op from CCSVI. My life has changed so much I can't even find the words. As some of you know I have been struggling lately (with my thoughts) over my MS diagnosis, CCSVI and how it relates. Do I still have MS, did I really have MS, what's MS have in store for me in the future. That is going to one heck of a future blog entry. A short 9 months ago I would never be doing what I am today. My wife and I took a trip to Big South Fork two weeks ago (wouldn't have done this). Two hour horseback trail ride (years and yes my ass hurt...lol). We had so a great time and loved the place so much we are picking up and moving out there as soon as we can. Life is to short to sit by and watch it. I have done enough of that. The really huge part of this is…..I am doing it..I am packing things up…I am planning….I am sorting through things that need to be done…I am doing it. Not watching, not trying to gather my thoughts, not fighting off aches and pains, not taking nap, not laying in bed…I am doing it. Awesome…… I will keep you all up-to-date as the move gets done...LOTS going on there.
In closing this quick update I wanted to pass this along. Everyone who contacts me asks similar things about CCSVI. When should I look at it, should I wait, whats the best time to get tested, am I sick enough, are these symptoms similar? The answer to all these questions is simple. If you are asking about it do it yesterday, waiting serves you no purpose. Find an Interventional Radiologists learn about CCSVI, get tested, and get treated. If you need help, information, or just want to talk please get in touch with me. I would be glad to answer any questions or get you any information I can.
PS: I haven't forgotten. Once the move is over I am going to take on writing the "Do I still have MS?" update. It may be a long ramble but it will be coming, promise.
Best to everyone!
Monday, September 12, 2011
Reflections 7 months post CCSVI.
Chill'n Monkey. |
WOW! 7 months since my surgery, my how time goes by. I remember the trip to NY like it was yesterday. I remember all the worries, the crazy ideas that kept running through my head. Was this the thing to do, is it really safe, what if this does nothing, what if this makes be worse, what if I become a burden on my wife and family…what if…..
Here I sit Monday September 12th after the 10 year anniversary of Sept 11th in reflection. I wake up, I think of Anne, I think of work, I think of my family, what's the weather? I get up let the dogs out, feed them, wrestle around a bit. Turn on the coffee machine, hmm…walking this am?…plug the iPhone in to charge, and pour myself a cup of coffee. Before I head off on my 5 mile walk I sit down to read over my Facebook…..wait a minute…..not one thought..nothing…. As I read through my Facebook, blogs and check the forums I frequent MS comes up, I have thoughts, feelings, comments and give some some feedback but things have changed….my how things have changed.
7 Months ago everyday I would wake up and the first thing I would do is look at the ceiling fan as I woke up to see how my eye was acting that am. Any blind spots? How is the Optic neuritis vision today? Next a self check of my body…what hurts..anything sore….how is my energy? OK sit up and get your bearings and try to get moving….ughh….did I even sleep doesn't feel like it. Then my thoughts would turn to Anne and trying to remember what I have to get done for the day? I better get it done early as I might not make it to lunch....stand up....here we go..
I know I have told everyone within my reach to please look into CCSVI, your diet, what your nutritional balance is. Look at your vitamin D levels and your B12 get those levels where they belong. But truth be told my CCSVI surgery has not only changed my life with MS but dare I say a rarely think of MS when it comes to me. In truth, I don't think I have in months. Now don't think for one second I don't remember it all or the burdens that I had. I am free of the fatigue, the cognitive issues, the heat, and the rest of "that" list.... all that matters is it's GONE! I have my occasional eye flare up but I was noticing just Friday that I believe my vision has even taken another step for the better.
Please for your sake get tested. Take a hard look in the mirror, your life might be the next one to change.
Wednesday, August 10, 2011
23 days...17 lbs and 7% body fat later......
3 Mile walk on the weekend. |
OK, I haven't been able to write this the last 2 weeks or so but I sat down this am and got it done. No more "teasing" about my weight loss!
After my CCSVI surgery in February my body started to change and adjust to the new open blood flow. We're not sure if it is a direct correlation to that, but soon after I developed hives.
My GP prescribed steroids and other medications, but when all of that was not successful the conclusion was "things should get better in a year or so". Hard to believe, but the hives cause skin and heat sensitivity that keep me nearly as housebound as MS did. It was time to take things into my own hands.
I decided to go back to what has always worked best for me - nutrition. Post-treatment I had been feeling so much better I slipped a bit off the Swank diet. Not a big surprise I suppose, but not something I'm proud of either. I considered returning to Swank but decided that a nutritional cleanse approach would likely be the most help for hives. Through research and talking to friends and family I came across what sounded like a possible solution, Isagenix.
The Isagenix system looked very promising. It is a high quality, all natural (and gluten free) line of products designed for nutritional cleansing and rejuvenation. Their synergistically designed program cleanses the vital organs without being invasive or depleting. They offer a ton of products and options to get you started toward a healthy balance, so many products it was a bit overwhelming at first. So my wife and I decided to try the 30-Day system which contains a good mix of products.
We like Isagenix because it is not a diet or a fast. It is an enzyme transport system that facilitates nutrient delivery, digestion and absorption of 242 carefully selected nutrients.
The Isagenix products are made with organic herbs, high quality vitamins and a uniquely processed mineral blend. Nutritional cleansing increases the health benefits you’ll receive from the ancient health practice of cleansing. The herbs, vitamins and minerals that aid cleansing do two things:
* Accelerate the removal of impurities from the body (.
* Nourish the body with vital nutrients to rapidly revive health.
A cleansed and revitalized body is stronger, resists illness better, is more efficient and performs at a higher level than one that is filled with impurities.
My review after 23 days is nothing short of outstanding. It was easy to familiarize myself with the program and plan my meals. I found a really handy app for the iPhone that tracks everything, called MyNetDiary (also available for Android). I weighed in, recorded my measurements and began my journey. I was surprised to find I am not hungry on this plan! Within a week I started to notice subtle changes in the hives. They weren't gone but the outbreaks were becoming fewer and less intense. I felt better enough that I wanted to take a walk, which I hadn't been able to do in a while. It was great being outdoors again. I noticed I had a lot more energy. A bonus side effect came when I weighed myself at the end of the first week and found I had lost 10 pounds! Now 23 days in, I am down 17lbs and 7% body fat. I continue to have plenty of energy and am increasing my walking time every day. My wife has noticed diminished back pain, increased energy, and she lost 8 pounds. Bottom-line we feel awesome. Isagenix really works.
I can't encourage you enough to give this a month and see if it helps you. There are so many benefits! If you have any questions about Isagenix or want to get started on a program email me here or call my cell if you have the number. I am able to get you in at wholesale prices. I also want to stress that to get results, you need to stay on the program. You can't expect anything to help you if you don't stick to it. I will keep you updated on my progress as I continue. I will be going right into another 30 day after I finish this one. Can't wait to see how things go next month!
More soon as always.
On Facebook here.
Tuesday, June 21, 2011
Tysabri vs CCSVI benefits, dangers, risks
In talking with several friends the past few weeks I have to bring up something, Tysabri vs CCSVI benefits, dangers, risks and what will help us best. My thoughts are as follows.
We all must decide as we sit staring as this disease and suffering from a multitude of issues what benefits we could gain if any from using any drug or other treatment. We are all faced with a terrible progressive disease. Will a drug cure me…….that answer is no. There is no cure for MS. Different drugs offer different options and do different things. Please do YOUR OWN research before blindly relying on your neuro to make the call. Be an informed MS patient and rely on yourself first to make these BIG decisions. Neuro's don't think like you nor should they make decisions for you. Sadly they are not always right and they don't always have your best interest at heart (I won't go into all that now).
Lets take Tysabri as example 1. One of if not the number one prescribed MS drugs. Tysabri basically blocks "errant" white blood cells. This drug is targeted toward patients with highly aggressive forms of the disease. The theory behind Tysabri is that MS an "autoimmune" disease attacks its own white blood cells. This causes diminution of the protective sheath that covers the nerves. This complicates communication between the brain and the rest of the body. This in turn brings on all the symptoms related to MS (muscle spasms, stiffness, fatigue and memory and concentration issues etc. etc.). The simplest, basic explanation I have seen of Tysabri is that is keeps white blood cells out of the brain. The key thing is that reduces your probability of additional exacerbations. Has this drug helped people? The answer to this appears to be yes it has helped some people. Dangers are possible development of a brain infection called progressive multifocal leukoencephalopathy or PML. To date 124 people have died from the complication.
CCSVI as example 2. CCSVI stands for “Chronic Cerebrospinal Venous Insufficiency,” a condition where people have obstructed blood flow in the veins that drain the central nervous system (the brain and spinal cord). Research indicates that CCSVI is significantly correlated with multiple sclerosis. As a result of these venous abnormalities, the blood flow rate through the central nervous system back toward the heart may become slowed, and blood may reflux back toward the brain and spine. CCSVI treatment is a non-operative, minimally invasive intervention usually performed as part of a catheter-basedendovascular procedure. CCSVI treatment employs either balloon angioplasty and/or stent placement to open or clear obstructions from the veins that drain the brain and spinal cord. Again I encourage you to Please do YOUR OWN research on CCSVI. Personally I have had a GREAT breakthrough with my MS having been treated for CCSVI. This doesn't work for everyone but does help a very high percentage of people. While the research is still being done, the help to MS patients is far better then anything currently being offered. The dangers to the CCSVI treatment and the angioplasty. Basically all the dangers involved with standard angioplasty apply. There is a possibility of restenoses on the veins (closing back up). 2 deaths have been tied to the angioplasty procedures I am aware of for CCSVI. One was a stent migration issue (can happen in angioplasty) and the other was a cerebral hemorrhage (can't be clearly linked to CCSVI).
All the complications, dangers and the 124 deaths vs 2 has to make you stop and think. What are the neuro's afraid of? I obviously have my own thoughts on what a person should or should not do based on my experience and what has happened to me.
The bottom-line to all this is please look at the facts and do your own research. There is no right or wrong answer. MS is personal and different for everyone. The answer is what you feel is best for you after you get educated on the facts. It's not what others think is best for you.
YOU DECIDE how to deal with YOUR MS.
Friday, June 10, 2011
We are you + MS
Great letter I came across this am. (Original post)
We are your parents, your children, your brothers and sisters; we are the person down the street; we are that lady or fellow who may walk a little 'funny' at the grocery store. We are the people that you "tsk, tsk" over because we might look "too good" to use a handicapped parking space. We are the folks who may not be able to get out...... to the Church or Temple every weekend; we are your peers; we are human beings.
We are the face of Multiple Sclerosis. A face that is nearly every ethnicity; that comes from nearly every country, that does not discriminate by social standing or class or financial or educational background or language or religion. We are both able to walk unassisted and use canes and walkers and wheelchair users; we jog and swim and partake in sports; we are housebound, we use scooters; we need respirators. We are everything in between. We are visually impaired and we are not. We are at every level of physical ability.
Of course, we "look so good" while we're doing it. We hear that phrase every day of our lives. Sometimes that phrase is meant as a compliment and sometimes it is meant to hurt or meant to shame us into doing something of which we may not be currently capable. We may be able to do that something tomorrow, though, or next week; Multiple Sclerosis is like that. We are like that.
Some of us are hearing impaired; yet all of us occasionally have people talk louder to us. "HOW ARE YOU D-O-I-N-G????" they'll scream, speaking to us as though we were either hearing or intellectually impaired. "YOU LOOK SO G-O-O-D!!!!"
Of course we do. Thank you very much. We are, in fact, the very best looking people in the handicapped community. We have secret beauty pageants every year, to decide which of our number is the absolute best-looking. Billy Crystal emcees, as his character Fernando; "..and you look MAHVELOUS my dear; absolutely M-A-H-V-E-L-O-U-S..."
We are brave. We are fragile. We want to live, and we want to end it all. We look for support and we want to stand alone. We are Everyperson. We are the People with Multiple Sclerosis. We are People, Just Like You....
I didnt write this but the words say everything.
Monday, May 16, 2011
The UGLY part of my CCSVI procedure
Canyon we think about you everyday. |
The time is flying by these days. I continue to see the same improvements as I did. I knock on wood everyday. It's funny how you just move on and don't look back until something or someone reigns you in to take a look. I have to admit the "are you sure you should be doing this comments" or my personal favorite "do you release what you just did, 6 months ago there is no way" are good to hear. All is good with my MS and its effect on my life, which would be VERY little!!!!!!!
I thought I would take this opportunity to again thank everyone again for their HUGE generosity and donations. I don't think I can say this enough or in big enough words.
The worse part of the procedure is now staring me in the face. The bills. I wanted to include a basic breakdown of all the costs to me and what my insurance did or did not cover. A lot of people have been asking me, so here it is. I do find it amazing how much money can be spent in a 4-6 hour span when it comes to the medical field. If anyone is interested in what a particular thing cost please get in touch with me and I will give you the figure.
Doctor:
Angioplasty procedure. ultrasound follow up etc.
Billed: $2372.00
Insurance: $636.30
Total bill to me: $1,735.70
Hospital (procedure done at Albany Medical Center):
X-rays, Venogram, Angioplasty, drugs etc.
Billed: $20,313.82
Insurance: $10,698.05
Total bill to me: $9,615.00
Entire Costs:
Billed: 22,685.82
Insurance: $11,334.35
Total bill to me: $11,350.70
I will have another update soon, keep the emails and messages coming it's great to hear from everyone.
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