MY DAY TO DAY LIFE LIVING WITH CHIARI MALFORMATION I

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9/13/07  Thursday, Hi everyone I am so sorry it has been such a long while. Things are hard right now. I am right side numb consistent the last few days. My right side face is drooping and my speech is failing because of it. I am in a whirlwind trying to get ready for this major surgery and trying to handle Paige and Micah's new experiences with 3rd grade. It is difficult as it is for any parent. I am  having a horrible time trying to button the kids' clothes/zippers are hard too. It makes me sad even though Paige and Micah are used to this. I feel that life is very overwhelming right now. I am in need of support and I am really bad at asking for it. I like being the supporter not the one who needs it. I guess we all need a break sometimes. You start to feel disconnected from things and that feeling is good in a whole but bad emotionally and when you run such a personal website. I miss talking to everyone. I still open my self up to new people so no one feels that they are alone when they are seeking others with Chiari, Tethered Cord, Cranial Cervical Instability. I will always be here for everyone in fact I am just behind in my journal entries and message board topics/entries. It is hard for me right now to keep up with LONG paragraphs and emails. I would love for everyone to email me brief updates on their conditions so I know. I feel a bit disconnected from my website and message board. I am doing my best to keep up with all of my passions but it is hard when one is not feeling too well. As surgery approaches, I have placed order for my Aspen collar which I get in a few days that will be worn on a permanent basis. This collar is very stiff but will keep my neck more stable and help with stability when I am doing any kind of movement ie walking, turning, in a car. I have a short amount of time to help Paige and Micah understand why I will be gone for so long.

8/11/07 This morning was one that was very irritating. I had 3 MRIS this morning to still get prepared for NY. I was in the tube for 20 minute increments doing thoracic spine, and brain MRI's. Let me say this , as anyone who has had a brain MRI knows how horrible it is. The radiologists performing the test put what looks like a hockey mask over your face and two pieces of honking plastic squares on each side to prohibit you from moving. Due to having all of this equipment on; your face is now 1/2 inch from the top of the tube and the blue line in the center is all you can look at. Ok, so my place gave me headphones with music, I am sorry but, you CANNOT hear the radio over the loud beeps and bangs the machine produces. Amazingly enough, as the machine pauses you hear your favorite song and have a happy moment but then, at that moment hear comes the loud noise again....That makes me so mad :)

I had Paige and Micah home this weekend. We had fun. We swam in our pool and laughed a lot. I dislike the summer so much ,as the kids have to be at their dad's for this half of it. I never want them to leave on Sundays so of course, I get all emotional. Last night even when I had returned home from taking them to their dads house I cried for a long time. I miss them so much! I can't wait until Labor Day when all is back to normal and they return home. I feel so out of my schedule with my babies gone. I am sad a lot of the time. I am trying to be strong but for some reason I am having a very hard time with it.

8/10/07 My New York, appointment is getting closer. I cannot wait. I am nervous though too because it is scary thinking about what the Doctor will say. I just hope and pray that there is a way to help me feel better. I just want to be able to function even a little bit, each day. I would love to be able to stay awake each day without taking a nap and/or feel like I need to. My friend  Shelly (Auburn Hills) is having her third surgery today to repair her leaking patch! She was leaking twice after her original decompression surgery a little over a month ago! I know she will be ok, but I am sad to hear her so frustrated and worried. It breaks my heart. I met Shelly through my website and because she lives so close to me, Shelly and her husband, Rod have become very close friends of ours. We have a lot in common, obviously and it is hard for us to see Shelly in so much pain.

8/9/07 I was interviewed by 2 newspapers yesterday! Clarkston and Oxford. The interview process went great. We talked about the proclamation here in Michigan and now in Ohio. It is so wonderful for the Chiari community to have these months of recognition, just like other conditions and diseases have. September is a month to recognize and educate, celebrate the Chiari community in our own communities. We are planning a walk/bike event here in Michigan. It will be held in October though, because of Septemberfest. Details will follow as they become concrete. My friend Elizabeth (Biz) is working very hard on this event and it will be wonderful! I cannot wait!

8/5/07 I am SO tired and it is very difficult to stay awake, I try to but if I need to sleep than I do. I am in the process of getting my MRI s  done for my NY trip. I need to be prepared. This is of super important to me. I am getting so excited to get to NY! The thought of getting better is so powerful,

8/3/07 I have to say that I have had some amazing people donate to my cause! My friend Palma has a lot of friends who have been extremely kind and sent money to Palma for her to send to me. That helps a lot for my trip of course. I am very appreciative ! My old law teacher, Don Walker made a wonderful donation also. Thank you! I am looking forward to my benefit coming up on August 19th, in Eastpointe, I am praying for a great turn out. I am looking to create a September fest sign to be hung on my street for September, Chiari Month. I have to take it to the village manager next week and have it approved by the council. I am keeping my fingers crossed!

8/2/07 In the end at night when we all go to bed we are all the same. Sick, trying to get appropriate treatment, recognition of this condition, and spread hope, awareness and to get the same. This is my definition of the Chiari Family/network.

7/23/07  I am in SO much pain it is unbearable. I keep going though, or try to...I am very sad today though. Today is appointment day. As most of you know this day brings much headache as I cannot do this alone. I need assistance. Pain clinic and Primary. One more week left in July, Wow what a L O N G month it seems....

7/20/07   No more ER trips Please! Last week I was in the Emergency Room a total of 4 times. One for my neck, one for pain/fall, and one because the x-ray the E.R. took of my neck came back as abnormal flagging the chief resident Doctor, so back I went for my second Cat scan! YUCK!!! I am trying to keep hope right now. I have a personal issue Friday, well I will tell: Court for my car accident. I am discouraged and worried about the Ny~ Trip, I hope many people will come out for the Spaghetti Dinner Benefit and show their support.

7/19/07 I had an old friend (Lisa) come by today and give me a new walker that was donated by her work "Life Care Supply". It is red, has a padded seat and brakes! It is amazing! My other walker really wasn't working. I am so happy for this donation. Additionally, Lisa is setting up a benefit at a VFW in East Pointe, on August 19th from 2-7. It will be a spaghetti dinner, and I will update with more details as I receive them. Also thank you Leigh, Shelly & Rod, and Lorna, Carrie's friend, Brian for donating to my trip to New York. Thank you for having such a BIG heart!

7/18/07 I am very frustrated . I am so afraid. I was so HAPPY this morning when I found out that I was accepted to The Chiari Institute. I was so elated and just happy. I am so upset right now. I have received donations from a couple of people which is amazing but, I am so far from raising the money for N.Y. I may have to cancel my appointment. It will be an all day process starting at 6:30 AM and continuing through out the day! I appreciate everyone that is standing by me to make sure that I am ok. It means the world to me. I went to the ER last night for my neck and today I was told after my Cat scan results yesterday that my tumor is in fact fatty. That is ok. I can handle that as long as we can handle it  and get rid of it. It can in fact dissipate on its own.

7/16/07 My pain level today is a 10 out of  10. I fell a few times today and that's normal but, today it really got to me. I am getting nervous about finding out about NY and wondering if I will be able to raise the funds. Some days it is hard for me to type an keep up with my website. I am trying though and I know that is all that I can do. These are the days I am fortunate to have children that love to help. Without my children I would be lost. In fact on another note, my compassion to spread Chairi awareness keeps me going as well. So, please know if you are reading this, I am going to help you! I am going to make so MANY people aware of Chiari that no one will have to ask what it is again.

6/1/07  I swear at times I cannot take it! I am in SO much pain! My goal right now is to get to New York to the Chiari Institute so I can get proper treatment. This walker and neck brace are doing no justice for me! I know it will be yet again another Brain surgery as the doctors seem to think it is tethered cord syndrome ( SPINAL CORD TEAR!) I am So tired and I have fallen down the stairs at last count about 20 times. Who can live like this? We are trying to raise the funds now so I can get to NY, as it is out of network and insurance does not cover this. Sorry, to be SO negative today! As you know, my diary is always real (and my true feelings).....I just need encouragement....

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5/21/07  PAIN!!!!! I am SO frustrated right now with my body and its inability to work with me! Chiari is so strange at times. I can always tell which days will be the worst right as I get up in the morning....Lately it has been continuous. I am emotionally dealing ok, and a lot of it is because of the people in my life. It gives me hope on days where it seems impossible. The sun has been shining and I try to use that as strength also. I am starting to finally adjust to my new medication, it helps take the edge of of the pain. I am so busy right now also. I am putting together media packs, and it is very exciting but of course it exhausts me at the same time. I hope everyone is doing well.

4/25/07  5/15/07(REVISED)

Home and Ok (Sort-of)  I am healing using a walker to help with balance due to a numb right side (leg, arm, face) and still wearing cervical collar. I just ordered my cock-up wrist splint to help with the extreme numbness of right hand at night. I have learned to drive with my left foot, not safe, and will not and can not drive far but, I have taught myself to utilize the left side of my body which is tired from over compensating. I am feeling pretty down right now! I definitely need support right now, this is getting more difficult to cope as my body continuously falls apart, literally, I dislike my walker as well but then again at times it is my best friend.

April 3, 2006  My decompression surgery took place at 9:30 A.M. and lasted approximately 4 hours. My friends and family waited anxiously to hear of some or any news in regards to the progress being made or if any complications arose. I briefly remember waking in the recovery room feeling very nauseous and the nurses whose faces at the time appeared blurry rolled my bed into the ICU unit. Once there I am not clear on how much time had passed I was cold, my throat hurt ( from the tubes apparently) and I was in a daze. A variety of people including nurses,  and my surgeon ( whom I adore dearly) asking me how I was feeling telling me all went well. Honestly, I felt as if my head had been completely run over by a semi truck. It hurt to talk, blink, move my head in any small movement, lift my arms, or to even be laying flat ON MY HEAD THAT HAD JUST BEEN GIVEN A 10 INCH CUT!!!!!

  May 23, 2006  I will start by updating the current situations in my life. I am currently still healing and it is tough. My right arm is numb constantly and it prohibits me from doing many of my basic daily living activities. I had hoped that through physical therapy which I attend 3 times a week that I would be gaining some use of my right hand at the least.  It is very frustrating for me right now. I have six year old twins that require much physical attention and my ability to help them. I am very blessed that I have help at home in the evening or life would be chaos for me right now. I honestly would not be able to get anything done! I am really trying to stay focused through positive thinking and faith but, some days it seems hopeless, truly. I am in school taking online classes and it gets very difficult to type with one hand when my arm goes out! My incision site is looking better however so that is a plus. I am hoping that each day brings me a little more hope and cuts me a bit more slack.

September 20, 2006 New diagnosis today. Cervical issues still and much more therapy.  I will be updating this in the next couple of days as I have lots to share. Love, Devin

October 1, 2006  It has been a long recovery process for me lately, I am starting my 4th Physical Therapy place, and have been diagnosed with Cervical Disc Disease, and Cervical Radiculopathy. I am working hard on my book but it is a slow process with a numb right arm and hand. I am back in a cervical neck collar full time as well

November, 2006  You would think with the holidays right around the corner I would be feeling excited. NOPE! I am exhausted just thinking about it. My right arm and leg have been going out again....too often and my neck feels literally like a bobble head.

February, 2007 Ok, I admit it has been a while. I hate to admit that the energy to type or talk about my issues took a turn towards a lot of self denial and pity. Some days I just don't want to think about it or even deal with it. I have no choice...Every day brings new obstacles. I just had an MRI done which will give my surgeon an indication of what our next move will be. I need to update you on my physical condition as of now. My right arm and leg still give out without indication. My neck is tired and I have developed some sort of knot on the left side. My neck brace is being worn more often now and it helps to take the strain off of my tired neck. Many dishes again have been broken due to my right arm going out resulting in me dropping these items. My own fault however for not using the plastic cups, which are intended for this purpose. My children are well. It is amazing how much they adapt to life changes and their mommy going up and down with physical issues. I have decided that I am probably looking at a long time of these issues. Solely that my life probably wont ever really get back to 100% mentally and/or physically. Is that frustrating? Yes. What can you do though? Such is life. I hope I am not coming across as having a pity party. I really want this website to be encouraging and reading through it; I do realize that many of my entries probably sound not too uplifting. I am sorry for that. I am still 100% in support of Chiari awareness and that all in all that surgery for that aspect was worth it. The rest will get figured out.

Things are SO hard right now! I am trying so hard to function and take one day at a time. It is so difficult to have to rely on others for all daily activities and responsibilities. I am 26 years old and I have a hard time dealing with the fact that I cannot do things that other people my age are able to do. It really gets to me. I feel very lonely at times and wonder when and if I will get better. The pain right now is almost too much to handle. I spend SO much time sleeping and I feel that life is just passing me by. I question, is this living? I know that I have to be thankful to be alive and with my family but at times I feel that it is hard to focus on the positive. I only want to feel better. That is all I pray about, constantly....That and to accept the changes in my life and my health and to find some inner and outer peace.

Another MRI today....We shall see what this one brings. I feel very frustrated today and lonely. I am trying to not feel this way. I hate to constantly complain about my pain and hardships but to keep it all in is hard as well.

My arm is numb today on and off and driving me crazy! To type is difficult....Learning to use my left hand is hard....I miss normalcy.

PINS AND NEEDLES!!! I hate that feeling of numbness.......

MOST OF MY COMMUNICATION HAS NOW BEEN SWITCHEDTO MY BLOG

I am so tired.....Between trying to stay awake and the constant battle to keep my neck up I am irritated. I am wondering if many other with this same condition and medical aliments feel the same way. My right arm had decided to become completely useless as of lately and everyone around this house is busting butt to keep this up and functioning the best way possible.