Monday, December 27, 2010
Friday, October 15, 2010
Thursday, October 14, 2010
Wednesday, October 13, 2010
So where do I sign up?? I would be on the next plane... Who's game? I know there are so many of us that deal with so much "crap" when it comes to Chiari (and related conditions). It's like it never ends.. doctors, medications, alternative treatments, insurance companies, social security disability, workers comp, office personal, friends, family.... its always a battle. Fighting for the proper care, to be heard, understood and not pitied. No matter which way you turn... its not easy. It almost seems we are a special breed who have to be strong.. or do we? Is it strength, bravery, courage, guts, faith, hope, patience or grace.. that keeps us going? Is it our family and friends?...the people who care for us..support us.. love us, fellow chiarians or God? What makes a person with chiari tick? Is our trials, tribulations, testimonies, or longing to make a difference in the world of Chiari? I dont know if any of us know for sure.. need to know or want to know.
I do know Iam a survivor. I survive everyday. I survive every surgery. I survive my symptoms. I survive arrogant doctors. I survive ignorant nurses and office personal. I even survive hurtful comments and advice. I survive. Survive~to continue to live or exist after the death, cessation, or occurance of, to endure or live through (an affliction, adversity, misery, ect), to get along or remain healthy, happy, and unaffected in spite of some occurrence. Synonyms~ Persist, Succeed, Outlive: refer to remaining alive longer than someone else or after some event. Survive usually means to succeed in keeping alive against odds, to live after some event that has threatened one. Outlive: stresses capacity for endurance, the time element, and sometimes a sense of competition. It is also used, however, of a person or object that has lived or lasted beyond a certain point. Im not sure about you, but reread that again, how many times does it say "live"? That is what we do... L~I~V~E!!!! We are supposed to live... even though we have chiari. Survive.. even though we have chiari. Make a difference.. even though we have chiari. Share you story, listen to fellow chiarians challenges; offer love, compassion and comfort to people who are hurting. You know what they are going through. we are all in the same boat. step out of the boat. Reach out and live.
Thursday, September 16, 2010
Wednesday, March 17, 2010
Thursday, December 31, 2009
I have a little block of wood in my living room that simply says "Be Thankful" on it. I bought it to be a daily reminder of what really matters. Knowing that everyday..every moment..every experience we have here on earth is a gift from God. It is a blessing we are given. We may not always think it is a blessing..but sometimes what we dont like... is Gods way of shaping us into better people. It builds character. These experiences help to give us tools to live life fuller and more fulfilling.
Iam sarting to put together a list of New Year's resolutions. Thinking of what some of them have been in the past and what I hope the future will bring. How I may or may not have control of this year's events. How I may handle "change" in the New Year. What priorities have changed... reprioritizing. Soul searching for what I want out of life in 2010.
New Years resolutions are defined as... a commitment that an individual makes to a project or the reforming of a habit, often a lifestyle change that is generally interpreted as advantageous.
That being said..what projects do I want to tackle, what bad habits do I need to break, and what unconventional lifestyle changes do I dare make?
I would like to wish everyone a Happy..Healthy..Safe..Prosperous..Successful.. Adventurous..
I will keep you posted on my New Years resolutions.....
Sunday, November 15, 2009
Tuesday, June 23, 2009
Saturday, May 16, 2009
Friday, May 1, 2009
Im loving the warm weather! Its a little dreary..but its still warm. Better than snow! Im really looking forward to this summer. Im focusing on getting things done around the house..and just tying up loose ends.
It seems this year..we have had alot of legal stuff to deal with. Paperwork to find..file..fax. This drives me nuts! But at least I feel like Im getting things out of the way.
Ive had a few doctors appointments...getting some tests out of the way that I have to have done for preop approvals. I started physical therapy for my knee. Dr Rodeo from Hospital for Special Surgery looked at my knee..he says I have instability and recommends physical therapy.
Im scheduled for shoulder June 5th. Exactly 1 year from my Anterior Cervical Discectomy w/Fusion. Happy Anniversary! The surgical coordinator told me that they would keep me for at least 48 hours because of the fiber optic intubation and the recent daignoses of sleep apnea. She also said Iam a complex case. Just my luck. I was hoping to ride home with my nerve block still in full force. So Im going to shoot for a Sunday departure. This way the traffic wont be as bad. The FDR is horrendous...bumpy & always backed up.
I feel like I have been on a marathon lately. Just really busy. I did get to meet with my friend Lisa last Saturday. We met in Danbury CT..at the mall. I had a great time. We talk almost everyday. I dont get to see her often. We met at TCI..we were both there for our first consult. So we have traveled this journey together.
The CT chiari group is planning a get together the end of May. We should have a good turn out. It would be nice to put some faces to the emails. The group has really grown. Its amazing to see how many people have joined. The more people we have..the bigger voice we have.
Wednesday, April 1, 2009
Sunday, March 29, 2009
I think this is awsome.. it is a weather link that you enter your zip code and choose aches & pains from the tool bar. It tells you how the local weather will affect you physically!!! I think this great!! I will also post this on my links.. http://www.weather.com/
I went to The Chiari Institute on Wednesday the 25. I met Dr Kula..who will now be my neurologist at TCI.. it was my follow up for the Craniocervical Fusion and to meet with Dr Kula for the narrative medical report I need for my federal comp case.
Dr Kula was very thorough..we went into the office at 4:45 and didnt get out until 9pm! Long day to say the least. I had 4 mri's & a ct that day at Mahasset Diagnostic Imaging. We went over my entire file ( or should I say 2!)..went over all my current symptoms..and how we were going to treat them. My syrinx did collapse..woe hoo!!.. but as he said...it does damage that doesnt always reverse after flow is restored. Thats why I have loss of sensation on my left side. We also spoke of the dizziness..balance..blood pressure issues..and how my cardiologist is treating them. My low back/leg pain & numbness...and hip/left leg pain. Oh..and the headaches.
He ordered a slough of tests...tilt table..ct of lower back..xray of neck and lower back..blood work.. repeat urodynamic & follow up with urologist... follow up with orthopedist..and the best is a prescription for support knee highs & some funky girdle to constrict my veins!! for the dizziness! Thats real sexy in the summer! He also wants a copy of the recent sleep study I had done. So left with alot of homework.
I had an appointment the next day for an mri arthogram of my right shoulder..so I made it an all day project..and got the xrays & bloodwork done while I was there. I have an appointment tomorrow for the CT of my lower back. Follow up with the orthopedist on Tuesday and Urologist next Tuesday.
Iam very anxious to get the results of my arthogram & sleep study tomorrow. My pcp was on vacation..hopefully he will call tomorrow. My shoulder has really been bothering me..so Im almost positve what the next step is.
My cardiologist is ordering the tilt table test. Iam still wearing the halter monitor for my heart..so Im not sure if his is going to wait until it is done to do the tilt table. I guess I will find out tomorrow. The nurse said that "Nothing Alarming" has been recorded. Next they will tell me..it is all in my head!!! We shall see.
As you can see..Ive been a little busy. I feel like having all these obsticles in my life..is like having a full time job! I started acupunture again a couple of weeks ago because my chiropractor was out of commission with back surgery!!But he is back now. Dr Kula said I should still be doing my exercises for my neck..everyday..plus massage every week. My neck has been in knots..which doesn't help my headaches & shoulder. So I have been trying everything I can to help ease the muscle tension.
Im sorry if I missed anyone's emails...I have been trying to catch up on them and clean out my mailbox. So if I didnt respond..please resend it..it may have gotten lost in limbo.
I hope everyone is enjoying our spring weather..(even if it is rainy)..its a sign that nicer weather is on its way..hang in there.
Thursday, February 26, 2009
Sunday, February 22, 2009
These are my girls. When I dont feel good..they are on my lap. Dont they look so cute with their sweaters on.
Well Iam almost 5 months post op from round 3. Iam doing well. I went a month with out a headache,,and then I have had 3 in the last week. Iam on day 3 of #3. Iam not complaining. A whole month of feeling almost "normal" is great.
I spoke to Dr Francomano last week..my geneticist. I wanted her opinion about my shoulder, blood pressure & orthostatic intolerance. She suggested I have another mri done on my shoulder to see if he damage has gotten worse. If so..surgery it is. She said that it could take up to 14 months for my brainstem to get back in the groove of things..so I should wait for a tilt table test. She wants to control my blood pressure with medication. My BP needs to be below 130/90. So this is the new goal.
Iam still waiting for the approval for my sleep study and now the mri for my shoulder. So Iam praying for patients.
I did speak to Dr Kula at TCI. I will be seeing him for my follow up next week , so that he can write my narative medical report for my federal workers compensation case. Of course its costing me a pretty penny for the report..but I really dont have an option in the matter. Im hoping to have new films taken..I anxious to see how everything looks.
The Chiari Mixer was a success. We had a total of 27 people...14 with Chiari. It was nice to meet people face to face. Iam hoping for double the people next time. The nutritionist Ive been seeing has offered to come and speak at the next get together..he said we could even make arrangements to have him meet with a couple people. Im really excited about this. I know he can help people. He has helped me.
I read a quote the other day that just stuck with me.. "Sometimes the road less traveled is less traveled for a reason" by Jerry Seinfeld. This could be taken in many ways. Some people are scared to take a road that is not shared..Or think what is the reason other people dont want to take this journey "it must not be worth it". I feel that it may be a harder path to follow..but nothing worh working for is ever easy. I think some people want everything to be easy..handed to them..or just luck. Drastic change... takes drastic measures. We choose the roads we travel..sometimes we are faced with road blocks or detours but we are the ones that choose new directions. What road are you on? are you happy with the scenery? and most important..is it taking you where you want to go?
Monday, February 9, 2009
Saturday, January 17, 2009
Iam still recovering from surgery. My hair is growing. The scar is healing. I do feel better in many ways. In other ways, things have just shifted. I dont have constant headaches or pressure. They come and go. I have had one for 4 days now. But for the most part they are not as frequent.
I have been having issues with my blood pressure. I was taken off the beta blockers back in October. My cardiologist felt I may have been over medicated after surgery. Im having dizziness when standing. It feels like Im going to black out...and then the lights come back on. My cardiologist put me on a medication for POTS (Postural Orthostatic Tachycardia Syndrome) to see if my symptoms improved. They did..but my blood pressure went up. He adjusted my dosage 4 times. It was still high. I had stopped the medication on Monday after seeing my pcp.
I went to a new cardiologist on Wednesday. My bp was 144/97. He ordered bloodwork, put me on 2 new medications and ordered an echocardiogram. He wants to see my again in 2 weeks.
The medication does help with the symptoms. So it seems to be POTS. He may order a tilt table test after my bp is under control.
I had both of my youngest children at the nl last month. My youngest son Mitchel is showing symptoms..headache, dizziness, visual diturbances, legg weakness, balance problems. My daughter is still having headaches. The doctor ordered mri's and mra's. Im no doctor..but they didnt look right to me. The nl said no, but I recently found out that someone I know went to this same dr (after a confirmed dx of chiari) and he told her she didnt have chiari!!! So of course I want a second opinion.
Iam working on putting together a Chiari fundraiser in June. I live in the Hudson Valley, NY. It will be a barbacue with chiari awareness items, raffles, gifts..ect. I will post more info as I make more concrete plans. Iam very excited about it. I love meeting new people who are affected by chiari. Its almost like an unwritten bond between people who share common challenges in life.
You are always hearing about new idea's for common obsticles we face daily in our lives. People are always drawn to people's stories of success. "How did they do that?" "What can I do differently to accomplish the same outcome." " Why are they so satisfied and happy?" For the average person...it is hard to do this. We as chiarians are somewhat of a rare breed. This makes it even more of a challenge.
Iam starting to see that we are all warriors. It is a constant fight. In every arena we enter. Whether it is finding the right doctors to treat us, to social security disability, family & friends understanding our condition and how it places unseen challenges, insurance companies paying for the right treatments, and learning to become more dependent when we need to be. Patience and perseverance have to go hand in hand. If you aren't patient you will be miserable while you are persevering. You will lose focus on what is really important.
I pray that everyone is having a painfree day. Please share any idea's you have for fundraising. If you would like to come join us, please contact me for travel info and directions. It looks as if we are going to have it the2nd or 3rd Sunday in June.
Tuesday, December 2, 2008
Sunday, November 30, 2008
"FAITH" what its your interpretations of Faith? The definition of this word is to "Trust" or "Believe", Allegiance to a person: Loyalty...., Sincerity of intentions, "Firm" belief in which there is no proof, Something that is believed with strong conviction "Especially": A system of "Religious" beliefs, "Complete Trust"... "Without question". Think about that for a moment...read it..over and over...until you truely understand what Faith is all about. Now answer this question...in all honesty...what do you have Complete Faith in? without question????
This is not a simple question. In our human world I cant think of anything that fits this question.. Anything can change. Our jobs, family, friends, financial security, safety, health.....
I have been through a long list of trails in my life... my parents divorced when I was 4 months old, I was cared for by my Grandparents, found out when I was 12 that my Dad was not my biological father (a man which I had no relationship with, whom I thought was my cousin was my father), sexually abused by a neighborhood boy when I was 5, my Grandfather died when I was 11 (whom I was very close with), tried to commit suicide at 12, drinking and doing drugs during my teens, had my first child when I was 15, my Grandmother died when I was 19, Married at 20, had my second child at 20, my husband broke his neck ..was almost paralyzed..we had no health insurance.. no other income, third child at 23, fourth at 25, diagnosed at 34 with Arnold Chiari Malformation, Syringomyelia, Ehlers-Danlos Syndrome, Tethered Cord Syndrome & a long list of other dominoing health issues, All life changing..to say the least. Not to mention our mounting health costs.
Needless to say.... There wasnt anything that I trusted in this world. I had asked for many years... "WHY" ...... how much can one person take ....what is it that I did to deserve all of this ... will it ever change ..... I wanted to see things differently... I wanted and needed to Trust... and so does everyone else. It is a need that is designed to keep us searching for something to Trust. The problem is we trust in things that disappoint us over and over again. And soon our search..longing..need to Trust is just a small spark left in our hearts. That we forget about.... give up on.
I know this scenario all too well. Thankfully I met a women that rekindled that spark in my heart & I bought my first Bible at 30. I started watching a women minister on tv.. Joyce Meyer. It felt like she was talking to me every episode that I watched ( not to mention she is a "Huge Starbucks nut). We started going to church.. the first service we went to..the pastor mentioned Starbucks.. I knew I was in the right place. When I became sick on July 3rd of 2007, we stopped going to church, but I have never prayed so much in my life as I have in the last year. I realized a couple of months ago that I need to be in church, surrounded by other people that Believe. No matter how crappy I feel, I go to Church.
At a time in my life..when I thought I had been through everything.. I really felt as if I had no one. I do have a caring, loving, supportive husband who I have been with since I was 13, but having these health conditions that are all rare ; the search to find the right doctors to care for me, help me, "Believe Me" was and is a very difficult road to travel.
My last surgery was the most difficult and painful experience I have been through. At one point in ICU I had a reaction to a chemical used during the surgery.. I was on a morphine drip given every 6 minutes.. I was still in excruciating pain.. sleeping with ice packs on my head. I knew if I cried..it would hurt worse. I began to pray the Lords Prayer...
"Our Father in heaven
hallowed be your name,
your kingdom come,
your will be done,
on earth as it is in heaven.
Give us today our daily bread.
And forgive us our debts,
as we also have forgiven our debtors.
And lead us not into temptation,
but deliver us from the evil one."
In Jesus name, Amen
I repeated this prayer outloud...over and over again. It was night time..and my room mate was sleeping. But I felt someone stroking my head. I finally fell asleep.
Do you want to Trust? Have complete Trust without question? Faith that there is somewhere... where your belong? Someone who offers unconditional love? To rely on?
Whether you are already a believer or not... what are you doubting? Do you have anything to lose? Are you worried that you will be disappointed? Again? Possibly made fun of for believing in something that has no proof?
Do you get paid on Monday? Before you work? No. Do you get before you ask? No.
You have to believe to recieve.
Believing will change your life.
Put your hurts, disappointments, worries, obsticles, doubt, in Gods hands. You lose your peace when you are always trying to figure things out, fix it yourself, heal yourself, build your own bridges.
Let Jesus come into your heart to rekindle the tiny spark in your soul. So you can see the light to the Lord.
I promise you wont be disappointed. Im not.
Pray with me....
Lord come into my heart and heal my past wounds
Teach me the way to a Faith filled life. Forgive me for
Any past actions that were disrespectful to you.
Fill me with your Love. Renew my strength
Show me Peace. Guide me. Teach me how to grow in
Your word and become a better Christ like person.
In Jesus Name, Amen.
Welcome to a better Life from this day forward.
God Bless you
Wednesday, November 19, 2008
Today I went to The Chiari Institute. I developed a lump on my head.. towards the top..where the rod ended. It is sore and mushy. I didnt have a fever and it wasnt red. I also have had a rough couple of weeks. I have experienced some major headaches. Also some very bad dizziness..but only with movement. I had dizziness before surgery, but I could be sitting still and have it. When I get dizzy..I also blackout. I have to hold on to something until it passes. I have had issues with
Thursday, November 13, 2008
Tuesday, October 21, 2008
As long as you wear the spoon of the day
You will be okay for the rest of the day
By Tori Hall
Tuesday, October 14, 2008
Friday, October 10, 2008
My friend Lisa wants to see what the front of my head looks like.. so here it is.My oldest son Chris..says I look like one of the spice girls. Not really what I would like to resemble at 35. But it is out of my eyes and off my incision.
Tuesday, October 7, 2008
Friday, October 3, 2008
Thursday, October 2, 2008
Monday, September 29, 2008
I was able to meet with someone at TCI today..Leigh...that I met online. We talked most of the day. Its always nice to meet new people to share your story with..and offer a listening ear. Its always a tough day to get through on your first visit.
I went to CT yesterday..to meet with the Chiari of CT Support and Awareness group. A couple of other NY chiari friends went with me. My wonderful husband was our chauffeur. It was nice to see everyone before my surgery.
My oldest son..Chris..will be posting here for me. To keep everyone updated.
Thank you again..for all the prayers, good vibes and kind words of support....it makes me feel all warm and fuzzy inside...knowing I have so many cheerleaders rooting for me!
Sunday, September 28, 2008
I cant believe tomorrow is the 29th! I have to be in LI at 8am for 2 CT's, then preop registration and testing at 10am. I have an appointment with Dr Verma at TCI in the afternoon. My son, Chris and his girlfriend, Sam.. are going with me. We are meeting a couple of people for lunch. They are visiting from Indiana. Both are here for their first consult at The Chiari Institute. So the questions about TCI's proceedures are endless. I dont mind..thats what Iam here for. If I can ease someones mind by answering a few questions, then so be it. That is when I feel like there is a reason for having all these of the wall disorders.
Well Im going to try and get some sleep... I have an early morning. I want to say Thank you to everyone for all your prayers, support, concern and comforting words of kindness. It means a great deal to me.
Tuesday, September 23, 2008
Sunday, September 14, 2008
Friday, September 12, 2008
Iam so confused..................Iam stressed out to the max........Iam feeling guilty for being sick...for putting my family in debt.......for being a burden.......for not being able to do all the fun things we used to do..........for not being able to clean the house and cook 6 days a week......for not being able to work.........for having to cancel social gatherings at the last minute because I dont feel good........
Its like..its out of my control. I just feel guilty. I know I shouldnt..but I do. My husband said it is completely up to me..but how can I feel at ease with myself knowing that Iam putting my family through all of this and they dont want me to have it done! Can anyone say "Resentment".... its a nasty word..that doesnt have to show its face to reek havoc in a family. He's worried I will be worse after surgery..I may be worse before surgery and they might not be able to correct it! I understand his point..but he doesnt walk in my shoes. Forget the physical aspect of all this for a minute...emotionally...Iam done...burnt...fried...caput. I think emotions went awol a long time ago...
Iam going to pray for peace...guidance..courage..renewed grace and mercy.
I need God to show me the way...Iam blind to the path I should be on...
May the Lord light my way..with words of wisdom and a new day.....
Tuesday, August 26, 2008
Tuesday, August 19, 2008
I called TCI today to find out when they are scheduling surgery and if they had put in for my mri approvals. Only to find out that she is not sure when they are scheduling surgery...my appointment was made for 3 mri's and an xray 8/28 at 8am...and get this!!! Im supposed to see the neurologist next Thursday at TCI..not the neurosurgeon!!! I dont need a diagnoses!!!! I already know what is broken. I was supposed to be scheduled with a neurosurgeon. Like I want to travel over 2 hours away to meet with someone new..to tell me what I already know??? My medical secretary said she would have to call me back..because Dr Bolognese is booked until DECEMBER!!!!
I think optimism has packed his bags and left the country!!! Pessimistic is movin in!!! Its a good thing Im going to my Psychiatrist tomorrow. I think we need to up my dosage!
Maybe Im over reacting a tad..but this is starting to turn into a series instead of a bad dream. Its bad enough I was told I would have to wait 12 weeks..now I may have to wait 4 months!!! I dont know how Im going to do it.....
Friday, August 15, 2008
I was able to go to CT and meet with some great women who are Chiarians. That was great.I have found some people that live close to me. I met with one woman a couple of weeks ago..Erika..she is a sweetheart. It makes things so much easier..to know your not alone. And to be able to talk to someone..that knows exactly how you feel. Im hoping to get together with the local women next week.
Well..I go back to TCI in 2 weeks. Im so anxious..I cant stand it. I need to know what is going to take place and when. They have scheduled me for 3 mri's (brain,cervical,lumbar) and a cervical xray.
I did go back to the orthopedist for my shoulder. But I went to his partner..Dr Rashenbach. He was very informative. I really liked him. But he ordered more PT. What exactly thats supposed to do..Im not really sure. I cant do any upper body exercise now! But my physical therapist added isometrics for my shoulder. I go back next month. But he did tell me that if I have to have surgery..Iam not a candidate for asthroscopic surgery. I would have to have reconstuctive. Just ducky!
So now I need to know which one will be first.
About three weeks ago..I found a lump by my right ear. It is small but painful. I saw my pcp ....he ordered bloodwork and put me on antibiotics. I followed up with my ent the next week. He said if was still there in 2 weeks..come back and see him.Its been 2 weeks. I now have a lump under my left shoulder...and it hurts. Im going to my pcp this afternoon.
Iam so disgusted.... it seems like it never ends.
On top of it..my oldest son,Chris, has another hernia. He is going to need surgery. This is the second one in 3 years.
On a brighter note.. I did talk to the case worker who is handling my SSD case. She informed me that they sent their decision into the federal office...and it was approved!!!! Although she informed me that the Federal office has to agree. So Iam praying that it sticks. She said I should get something in the mail in the next week or so.
This would be so helpful. I can then move on to round 2...Federal Workmans Comp. A much bigger battle. I have bills pilling up..and more to come.
I have been following blogs and forums..but really havent been active. Its just so depressing. I know that its helpful for other people..but I dont want to bring them down. Im usually a very optimistic person. Lately all I can do is pray for renewed mercy and grace..strength..courage.. and patience....
Tuesday, July 8, 2008
I started physical therapy a couple of weeks ago. The therapist that I found is great. We are still trying to find some exercises that don't aggravate my neck. The smallest movements can set everything off. I enjoy the massage more than anything.
I did recently find out that one of my doctors at TCI ( The Chiari Institute) is leaving.. Dr Roonprapunt. He said he lives in Manhatten and the commute is affecting his family life. Needless to say.. Iam sad to see him go. He wont be their when I go for my followup in August.
I have an appointment August 28th at TCI for my postop check. I will have some xrays done to check the fusion in my neck and see if my symptoms have changed. If my symptoms are the same and the fusion has healed..then I will have the CCF (Craniocervical Fusion) with duraplasty done.. If my symptoms have improved... then all is well.
I still feel that Iam going to need the CCF to help releive the symptoms. But at the same time.. Iam a little nervous about going through all this and not seeing improvement. The surgeries that Ive already had done..went well. I feel like Iam pushing my luck with having more done.
My right shoulder is still bohering me.. Ive now had 2 cortisone shots and they aren't helping. My pain management doctor and my physical therapist have both informed me that Im going to have to go through with surgery to correct the laberal tear in my shoulder. GGGHHHhhhhhrr!
Iam still having difficulty sleeping..so once again..my sleeping perscription was changed. My pain management doctor also changed my pain medication to Dilaudid. So hopefully the new meds will help get through the next few weeks until I go back to TCI for my follow up.
Iam enjoying the nice weather..when it's not raining... I was finally allowed to get into the pool and hot tub. I haven't been very active on ASAP (American Syringomyelia Alliance Project)... I read alot of posts but haven't really been involved. Im kind of bummed about all this.. I wanted to get everything over with and work on getting better. I didn't want to be having surgery in the fall on top of the holidays. At this point I don't think I have control over that...