Emergency trip

Hey Everyone! I know a lot of you have been anxiously awaiting my next blog, to find out what is going on, so here goes! So, how much detail do you want? I love to write, so if you have the time, I have the specifics! Pull up a chair and your favorite drink and join me on this journey!

I had come to the conclusion that I would not be able to wait until my regular appt. w/Dr. Yakes after July 4th - so Celia quickly made arrangements for us to head to CO! I believe we headed out on a Wed. - driving from Corpus Christi to San Antonio, TX! The flight would leave San Antonio and get us to Denver in a couple of hours. Soon as we had arrived in San Antonio, I had started working on making sure I would have a humidifier for my trache once I arrived @ the hotel in Denver. Lately, we had been staying @ the Marriott Suites on Monacco that had a kitchen area and a couple of bedrooms. This time though, w/the last minute notice, we ended up having to stay @ the Marriott Tech Center hotel, that Celia ended up liking better. It was a nicer hotel, but no kitchen, darn! Anyway, with all the rushing around, I had forgotten the paper w/the information I needed to get my trache equipment set up, and even though I called the Apria company that I needed to be in touch with, no one seemed to know what I was talking about or what I needed right off! Called Mark for help and there is so much paperwork everywhere that he wasn't able to help me out right away either. Once arriving in Denver though, I tried again and could not believe my luck when I actually reached the SAME GIRL that had been on call the last time I needed the same equipment and she remembered me! What luck! Her name (forgive me if I misspell it) is Shermaleen and she is fantastic! Right away she gave me all the information I would need and I told her what hotel we would be @ and Shermaleen said she would do her best to get me what I needed! By this time it was getting pretty late and I thought there was no way this could be done in time - but you know what? Shermaleen made it happen! Yay! Wow! How do you spell "relief"?! See photos of Shermaleen setting up equipment in hotel room! I'm convinced if it had not been Shermaline on call, my equipment would not have been delivered!

I was to show up @ Swedish the next day (Thursday) by 1:00 p.m I believe to get set up for procedure. I had been told I could have a "light breakfast" @ 5:00 a.m. so I wouldn't go all day w/out eating/drinking - but I didn't want to go there! I know I was added on to the schedule, but do you know what time I was finally taken into surgery? By 8 p.m.! Dr. Yakes himself came to transport me to the surgery area! Can you believe it? To boot, their schedule was just packed and they had only 1 instead of their usual 2 surgery rooms available due to reconstruction or something going on! I remember being concerned that when I get out of surgery that I never have that little cap over my trache tube that allows me to talk or clear my throat and I spoke to Quinn, the Anestheseologist about it. Course first thing I want to do when I wake up is move and all the nurses jumped @ the same time telling me not to bend my leg because of the arteriogram Dr. Yakes had done. So, I start praying for patience to help me through how long the process will take before I'm out of recovery and into a room, etc. One of the male techs/nurses/transporters (?) was trying to make conversation and kept saying to me, "That is such a cute bear, what is her name"? The other nurse kept telling him, "she can't talk right now". He was of course referring to Saba, that I always take w/me on these procedures for love and comfort!

The floor nurse came and introduced herself and I remember her saying something about taking some of the gauze out of my mouth. UGH! No wonder I was feeling all claustrophobic - I had a big wad of gauze inside my mouth! Of course there was more fun to be had - with all the swelling, I would not be able to swallow for a few days! This meant staying in the hospital longer than the usual overnight stay! There is no way I would be released unless I was able to swallow some of my medication in pill form. In some photos, you can see I'm wearing a "hose" like wrap on my arm to keep my IV intact w/out it moving so much. Need to have that for all my meds!

I remember Dr. Yakes saying something about there being a big vein @ the back base of my tongue, and that is where the bleeding had been coming from. So, of course in order to take care of that problem, he had to shoot the area w/16ccs of alcohol, which means swelling and discomfort! I had Dr. Yakes and his P.A. Kelly come by several times during my whole stay to check up on me! I had to laugh @ one point because the nurses were even in awe that Dr. Yakes was actually there in person! They would joke about there being a Dr. Yakes sighting! Celia just missed Dr. Yakes a couple of times, but I grabbed my phone and took a photo, although not a very good one! He had asked if I wanted him to bring me some books, because he saw I was reading and was enjoying myself. Told him that Celia was out doing the very thing for me, so no bother. He even offered to put another blanket on for me because it was a little nippy in the room!

I just have to say how Celia just went above and beyond the call of duty during this trip. I felt so bad for what I was putting her through, but her thoughts were only of how she could make things better for me! Shortly after I was put in a room, I didn't feel like doing much of anything! Celia would ask me if I wanted the TV on or whether I wanted to walk down the hall and my answer was always no. I felt like a zombie and didn't want any added noise, distractions or anything going on! Later, I did take her up on walking down the hall! Saw the bulletin board of photos of some of my favorite nurses! Course there is Dave LaBadie - he is one of the "original dream team" - from the very first procedure I had @ Swedish! To the "original Saba", and others that have become friends like Zufan, Becky, Judi, Nate and Victoria! Victoria always has a smile and remembers me!

Little did I know the fun was just beginning though! Dr. Yakes said for the next couple of weeks that I could only have "soft food" and I wondered what he really meant by that. He mentioned eggs, mashed potatos and pudding. I started figuring out anything I didn't have to chew, like a piece of meat - things like jello and yogurt! You can see where I have a syringe in my mouth - one of the nurses suggested I try that to get some food in my stomach!

I want to get this blog out, so I'm just writing and putting all the photos I have between my phone and what Celia took w/her camera! Would you believe I had a small therapy dog come by? The lady that trains him even gave me his card, but I can't find it right now to tell you his name, but he is a Lasso Apso (sp?). Our dogs Hanz an Bella are often mistaken for this breed! Speaking of our babies - I was happy that Celia was w /me on this trip, since I ended up having to stay longer than expected, @ least Hanz and Bella were home with Mark!

After getting home from Colorado, I started noticing it was hurting to swallow. I knew I wanted to see my primary care physician again before heading back to work, to make sure I had plenty of refills on all my meds and was taking everything correctly! My tongue also felt like it had been cut many times with a razor blade - ouch! When I went to see my PCP, Dr. Boynton, he diagnosed me as having "thrush" 0r a yeast infection in my mouth from all the steroids I had been taking! Yikes! Dr. Boynton said it would be @ least 48 hours before I would feel better, but it turned out to be more like 4 days! My hands were also pretty dried up from the steroids, causing cuts and bleeding! Ooooh that reminds me, I had a terrible bleed from my mouth a few days ago! I was using a Q-tip to get food away from my gums and boy that bleeding came fast and furious! Had to pack my mouth with gauze to have it finally stop! I'm posting this and will add to it as I remember more!

Cyndi

Those steroids sure are a catch 22! On the one hand, I knew Dr. Boynton wanted me to wean myself off of them, little steps @ a time - but I also felt like I couldn't because they were helping with the swelling on my tongue! Course if I didn't wean off of them, not only does it slow the healing process, but then the next time I would need to take steroids, then they wouldn't work for me because I didn't get off of them like I should! Ugh! Stop the insanity already!

Meanwhile, I'm up @ all hours of the night w/the steroids, keeping Mark up and every time I get up to get a snack, the dogs get up and follow me into the kitchen or wherever I'm headed! I've been getting by on a couple hours sleep a night and I try and make up for it during the day here and there!

Here is a picture Celia took of a rabbit outside the hotel!

How many drugs can I take and still stay awake?

Is that like the commercial many years ago that showed a wise old owl asking, "How many licks does it take to get to the inside of a tootsie pop"? I wish it were that simple! Hi Everyone! How are you? Right now it seems I'm battleing with keeping my pain level under control. Yeah... I was doing great after the last procedure the first week of May, but when I started to go down to 2 steroids a day from the 3 that I was on (20 mg. each, so that is 60 mg of Prednisone a day!), the pain started increasing! I called to speak to Dr. Yakes P.A., Kelly and she approved and called in more meds so I could have 3 a day again and slowly go back to 2 and then one. I have not been able to feel as well as I had been feeling before - no way. Seems now I'm constantly looking @ the time and trying to figure out what I can take to control the pain and not fall flat on my face from over medicating myself! I can't be falling asleep @ work! As long as I'm moving around, I'm ok - but if I close my eyes for a few seconds, I'm gone! Actually, the other day Mark and I (along w/Hanzarella) were on our way back from visiting with Jim and Shelley in Rockport, and Mark was telling me some story about something that happened @ work and I was looking @ him, listening and sometimes commenting on something he said. Next thing I knew, I could hear myself snoring! My eyes were wide open though! I even told him, "I know, I heard myself, I can't believe it"! That was ridiculous! Stop the insanity already!

Ok. So much to do, people to Thank and think about ... ! Last week, Mark and I attended a Mass for our healing intention that our sweet choir friend Terry Schneider has for us every couple of months! I wish I could be there for her, she is dealing with her own health issues lately and here she is doing nice things for us!

I finally went back to have lunch @ the restaurant where I had that terrible bleed before going back to Denver this last time. I just wasn't ready emotionally to go back to that restaurant, and also, I felt bad about what had happened there. My co-workers were always assuring me that the management was asking for me and were concerned about how I was doing! Sure enough, the waitress was very happy to see me and asked that I not be bothered about how anyone else felt about what happened. They welcome me back always! I have to say, kuddos to my co-worker and friend Diana A. - the brave soul that I go out to lunch with some times! She has training in the nurseing program, so blood doesn't scare her - but to think she is willing to be not only seen with me, but to deal with whatever this horrid avm will dish out @ any given moment! She and I have lots in common and enjoy discussing books, coffee, our cross stitching hobby, our pets, The Royals! Her sister lives in England and Diana's brother-in-law works in Parliament, so that always makes for interesting conversation! I'm waiting to receive my commemorative stamp issued the day of the Royal Wedding of Kate and Will that Diana's sister was nice enough to go purchase for us! COOL!

We recentely found a "dog park" that we had heard mention of before, but could never find. Since we love taking the kids to Petsmart, we often have conversations w/other pet owners and had heard about a park in Corpus that allowed dog owners to take their dogs to run and play with other dogs! Started talking to a lady that owns a chihuahua (see photo) named Tako (yes, with a "k") and she was the one that mentioned the dog park! Decided to really look into it and found something we really like! There is an elementary school that allows pet owners to use their playground several days a week, as long as the poop is cleaned up! So, dog owners can bring chairs to sit on, drinks or whatever makes them comfortable, water for their pets and poop bags to clean up after them! Hanz tends to stay close to us, but Bella makes the rounds and gets in a submissive possition on her back and runs around everywhere! See photo. The "dog park" has a Facebook page and is run by Amanda - she has a Great Dane named Phantom and a smaller, cute dog named Lola!

Well, unfortunately, another avm problem I've been having, is feeling (and knowing) that blood is running down the back of my throat! It usually happens when I'm eating, and it's scary not knowing how much I'm going to have to keep swallowing before it either starts comming out my mouth or what! I don't want it to come out my mouth, because I can't open my mouth very wide right now (due to the avm, and not being able to work w/the therabite since my "wound" is too fresh from the procedure still)! When I do bleed and it comes out my mouth, it is alot and globs - UGH! Poor Celia (and Mark), they've both witnessed this and it's not pretty! So a couple weeks ago, about 2:00 a.m. I woke up knowing I was swallowing blood. Got up and woke Mark up where he was asleep on the couch. Wanted to make sure someone knew if I started choking or something! The only thing running through my mind was that no one here would know how to help me if I went to the ER. Called up to CO and woke up poor Kelly (Dr. Yakes Phys. Asst.), but had to find out if I ended up having to make an emergency trip to CO - was Dr. Yakes even in town or wanted to know how packed their surgery schedule was for the next couple days so that I might be squeezed in! I had already decided to just wait until morning to ask these questions, but Mark was already getting Kelly on the phone. It was just going to inconvenience way too many people to try and fly up there in the next day or so - we decided to just wait it out and hope it didn't happen again! When this happened, I panicked - you would think I would be used to it, huh? If I bleed from somewhere that I can apply pressure, no problem! But when I'm swallowing blood, that is another thing! Can't stop it on my own then! This actually has happened again a couple of times, but luckily doesn't last long. I just pray that I don't have any major bleeds until I can get up to see Dr. Yakes in early July!

I wanted to show all of you how great Shalon is looking these days! I am so happy that she has made such progress! She is paving the way for the rest of us that still have a ways to go! I remember before having her first debulking surgery, she really grilled the doctors with all her questions to make sure she knew what they would be doing to her! With her posting her surgical photos and showing us what she went through, @ least it gives us an idea that we'll be ok through it too! I think she looks fantastic! Here she is with her wonderful hubby Josh! He reminds me so much of Mark - loves his wife and very supportive!

Anyway, I just want to thank all of you for sticking by me with all your prayer, friendship, love and support! Look at the lovely prayer shawl our choir friend Margaret Irving made! How fantastic is that?! Wow! You know, once in a while, I was lucky enough to stand close to Margaret (she is a 1st Soprano and I'm a 2nd) while we were singing in the choir loft during a rehearsal, and she has such a beautiful voice - that I would end up not singing because I got so involved in listening to her! Every time she'd see me, she would greet me by saying, "Hey pretty lady"! Celia says Margaret used to laugh @ all the faces I was making during rehearsal over something the director or someone was saying. I didn't even realize that I was reacting that way, but apparently it was amusing Margaret across the room! We've really made some great friends through the years we spent in choir!

So much more to write .... so ...., to be continued.

Ok, I finally have the photos to post of me with the prayer shawl! I was just so moved by the fact that our friend Margaret really took the time to not only make this shawl, but to be surrounded in her prayer as well - WOW! This is why I always say that all of you are with me on this journey as well! I so often tell people that I really am blessed and I mean it! I've included photos of me @ St. Pauls in Flour Bluff, where our dear friend Terry Schneider has Masses for our healing intentions! If you'll notice the kerchief I'm wearing - that was given to me by a friend/co-worker, MJ Gamble - that has become a fun, supportive friend! She'll come across something she knows will cheer me up and brings it to me @ work!

Now, I can start working on blogging from the procedure I just had! Thank you so much everyone for all your love and support!!!

Cyndi

50th Birthday-embolization

Good Morning everyone! How have you been? Well, we've had some interesting things going on, and it's been a while since I've blogged, so here goes!

May 1st marked my 50th birthday! Don't feel my age @ all, and turning 50 didn't bother me a bit, because right now my life is on hold with this AVM! Nothing matters but that, so I don't even know how I would normally feel turning 50! Mark hosted a wonderful dinner party for me with delicious steak filets, roasted veggies with pineapple on the grill and wine of course! Mark also made his trademark cake - an Italian Cream from scratch - yummy! Wasn't much up for photos, but did get a couple of good ones of Hanz and Bella with the roses that Mom and Vicente got for me!

We just got back from CO and what I believe is my 40 something treatment/embolization. You know, this has been discouraging for me lately - getting tired of the whole thing! The last time I had an embolization was like Feb. 21 and right afterward, had several pretty bad bleeds from inside my mouth! One of those happened during my lunch hour @ work in a public restaurant! Yikes! Luckily Mark had been with me and Celia came to help as well! The day before leaving on this trip, a friend/co-worker was treating me to lunch and my mouth started to bleed! Luckily, it was minor and didn't last but a couple minutes. Scary though! That was on a Monday. We left for CO the next day, and that night (about 3:00 a.m.) I had a bleed from inside my mouth! It was really coming out - I hollared for Mark to wake up in case I fainted or something, but it was alright after a bit. UGH! I don't even know how I slept after that happened!

This trip I had decided to try and see if I could get a humidifier from the Aprea Company here that supplies my trache needs. Turns out there is an Aprea in CO, so I was able to get all set up with a humidifier I need to wear on my trache during sleep! That makes everything easier when I'm in surgery! Without the moisture on my trache, I would wake up after the procedure feeling very dry and wanting to hack/cough!

So we arrive @ Swedish @ 7:30 a.m. - get all ready for the procedure and the anesthesiologist came by to introduce himself! Don't ask me his name right now, but he is in one of the photos, holding a trache box. Here is a photo of one of Dr. Yakes P.A.s - Mandy! She's really sweet and was going over some meds/paperwork with me! See Saba in the bed behind me?

The next photo as mentioned earlier, shows the anesthesiologist. I've always had so much trouble getting a trache replacement from anyone down here, that we had gotten to where we would request 2 when I arrived in CO for an embolization. One to change out and another to take home! The Tech from Aprea promises she can get one ordered for me, so we're going to try it from her end in CO, since we haven't been able to get one ordered for me down here with Aprea! Actually, glad Mark had his eagle eye catch the fact that the first boxes brought out were the wrong size trache! Totally too long/big and not @ all what I needed! Whew! So glad Mark caught that!

Anyway, all went well enough - you can see in the photo where my arm is wrapped up in a hot towel, getting ready for that IV! The nurse got it in first time and it wasn't too terribly painful, so that all turned out well! I was on the phone talking to my dear friend Felice as the nurse was inserting that IV, so she was glad I was distracted and on the phone - made her job easier!

The anesthesiologist came by prepared with a needle full of my happy juice, so I barely remember even being wheeled out of there! Most of the time I'm wide awake until I am moved over on to the bed in the surgical area - but this time all I remember is hearing that I was getting that injection in my IV and then waking up! The nurse kept telling me that she couldn't find Mark in the waiting area - no kidding! He never sits there and waits, and she finally said she would try him on his cell phone! I knew I had to lay flat due to the groin injection for the angiogram, so I could have been more comfortable. To boot, I had this long tube left on my trache, and without the little plastic cap @ the end of the trache, I can't cough, clear my throat or anything! I needed Mark there to tell someone, because @ the time I couldn't do much about my situation! I started praying to get me through the waiting period and next thing I knew, I was being told I was going to be taken to a room and that Mark would meet me there! Whew! Finally! Got settled in bed and slept a while. Poor Mark, bored watching a movie in the room with me. Woke me up so I could order my dinner - had lots of soft food. Scrambled eggs, malt 0 meal, yogurt and juices! Dr. Yakes used 14 cc's of alcohol this time, and I don't look too too bad as far as swelling! Made sure the nurses knew to give me decadron (steroid) for the swelling to get that under control soon!

Mark stayed with me until 10pm or so, then headed back to the hotel to get some rest! I sat up a while and read, dozed off and on.

Next morning Mark arrived with my usual treat of a white chocolate mocha from Starbucks - took a shower to get the blood out of my hair and got dressed and out of there! Caught our flight out of Denver on time, but as usual, had problems getting home after that! For whatever reason, the flight that had us arrivng in Corpus Christi by 9:30 p.m. was delayed a couple of hours, so we didn't land until right before midnight! My dear friend Sylvia and her husband Randy had generously offered to take care of our furry kids, Hanz and Bella and we needed to go get them still! Last trip before this one, had us stuck in Dallas an extra night - which meant one more night that Sylvia had to keep my kids and us missing them so much too! Mark gets after me for commenting out loud on missing the kids while we're in CO - but we had run an errand @ Wal-mart and I had lost Mark in the store. Called his cell and do you know where he was? In the pet supply area! He had to admit, he was missing the kids too! We were all so happy to see each other when we arrived @ Sylvia's - she was nice enough to stay up so we could get Hanz and Bella home! It is amazing how much those kiddos mean to us - they complete our household!

Ok! Enough for now ... I've got lots of Thank You notes to write for goodies received from family/friends lately! Thank you to all who are with me on this journey - your love and prayer helps to get us through. I've gotten a little discouraged as of late, and my friend Sylvia told me, "no, don't do that, you're my hero and you need to stay positive"! That's where all of you come in - your prayer gives me strength to endure and carry on! I'll be in touch! Happy Mothers Day to all the Moms!

Love,

Cyndi Schuman

P.S. right now my only discomfort is black scabbing on my lip and chin area. Glad Dr. Yakes worked along my mouth area - maybe that will be the end of any more mouth bleeds! Unfortunately, it makes it hard to brush my teeth on the left side from swelling and dead skin I lose! Yuck!

Brussels Grandma!

Hey Y'all! How is everyone? I am doing pretty darned good! Shhhh.... don't say that too loud, right? I thank God every day that I haven't had an bleeding from my mouth, nose or wound area! Yay! I am taking extra meds like Iron, Potassium and even something my brother-in-laws Greg's youngest brother is involved with - a multi-vitamin pack called Life-Pack Nano! I've been off steroids for almost a week - I was on them for a long, long time, so I'm happy to be ok!

I just wanted to add something when I was talking about my great support system! Lately, Mark has been working late and worked all weekend, and I had been telling Mom that Hanz and Bella weren't getting their walk that Mark usually takes them on. I would love to take them myself, but since I had been so weak before and I really couldn't handle them on my own .... but Mom volunteered to help me walk Hanz and Bella! Wasn't that sweet of her? I didn't take her up on it, but I sure appreciated her thoughtfulness! Hanz gets really excited when we tell him we're going to Grandmas! Bella is too little to understand all the Grandma hub-bub, but she's always happy to see Mom! Mom even has a "Brussels Grandma" T-shirt! She takes that role seriously, and always asks about our furry kids and says to give them a big squeeze for her!

I had a little big of a rough night - was a little anxious and couldn't seem to get comfortable. Wasn't time for any meds, although I felt like taking something, but it was too close to the time to get up, so I didn't want to take something that would make it that much more difficult to get up when the alarm rang! Hanzie was right there with me - if I got up, he got up. If I went to the bathroom, he followed me over there. Such a sweetie! Bella slept through the whole thing, which is good. She and Mark don't need me taking their rest away! Speaking of, I'm heading to my evening nap! Mark is working a little late, but he'll probably get in with time to walk the kiddos. I need to check on Bella, her latest habit is running off with my rubber stamps! Mark moved a group of them from a lower shelf, but she found more that she could reach! She had the rubber stamp of a Brussels Griffon a bit ago! Yikes! Hanz didn't do that for long when he was little, so here's hoping we can break Bella of that habit!

My love to all of you!

Cyndi

Positive Energy!

Hi! I don't even know how to open my blog entries anymore, so I'll just say, "Hi"! You know, Mark and I were watching the Celebrity Apprentice show Sunday and I was just shocked @ how Dionne Warwick and Star Jones were behaving! The job was to create a childrens book - each team was responsible for several objectives regarding the book, but the way Dionne and Star insisted on getting credit for coming up with the idea and having written the book was just embarassingly ugly. Yikes! I suppose I could see their point in making sure that they are given credit for coming up with such a great idea, but it was the way they went about it and I felt that since it was for charity, that it should have really been handled better. Very negative - if you saw the show, Marlee Maitlin was so mad about how terrible the attitude was that Dionne and Star had! I'm just using this as an example of what I had just written previously - how I really try to surround myself with positive people all the time - who would want to do otherwise? It just amazes me how much "bullying" there is out there in our daily lives. Just going about our business, have you noticed how much "evil" there is out there? OMG!! Why would anyone behave so badly? Apparently the people that act that way are very unhappy and want to make other people miserable! Wow. I mean, really? REALLY? There are people out there that are so bitter and angry that they thrive on "attacking" happy people like me?! You would be amazed. That's ok, I know who I am and what I believe in and I won't let anyone get me down - @ least not for long!

I just want to emphasize how blessed I am to have these people I can call my family and friends! Here is a photo of my sister Celia and I - this was taken on Christmas Day in Mom's back yard!

Then, there is the beautiful Fossum family! My brother-in-law Greg is awesome - always trying to do something to help me in some way to make things better! The boys are so special - Davis tells his Mom that he prays for me and always asks how I'm doing. Mark (little Mark) has come to special prayer Masses for me - that has meant the world to me! He is such a doll! Both boys are very sweet and loving to their Aunt!

Here are some of my very best friends! Here is Patty (wearing glasses) and Dorinda - this was taken in December and the first time they met each other! Patty lives in Dallas and Dorinda in Houston! I've known Patty since I was 13 and Dorinda since I was in my mid-20's! Both are amazing and wonderfully supportive of me and my situation! Dorinda has been with me through countless surgeries through the years as I've tried to get rid of this avm! Dorinda is a party waiting to happen and very loving! Patty and I have always kept in touch through the years and whenever we see each other, it's as if no time has passed, we pick up right where we left off! Patty and I have always had fun laughing @ the same things and just feeling comfortable with each other, knowing we are there for one another no matter what!

Then there is the beautiful Felice, pictured here with her darling little girl Emily! She lives in Dallas with her husband Jon and of course

Emily! I met Felice when she joined the Cathedral Choir and we hit it off instantly and have known each other probably about 17 years! She and I have laughed so much and had lots of fun through the years! How can you go wrong having a friend named Felice - her name says it all!

You know I have to say that my kids are the cutest in the world! I come home to these adorable puppies that love me unconditionally! Hanz and Bella make me so happy - they are wonderful therapy for me when I've gone through some bad times with this avm! To me, heaven is jumping in bed wearing my jammies with my babies surrounding me and Mark laying next to me! Mark takes such great care of me - from doing all the cooking, to everything else in between! We always say that when we said "in sickness and in health", we had no idea it would be this difficult! It has brought us closer and has taught us so much about what is really important in life!

My Mom is always praying for me. My in-laws, Doris and George and thier friends are always praying and asking about me. My brother-in-law Jim and his wife Shelley have been so fantastic about helping us with whatever they can do to make our lives a little easier! I appreciate Jim taking Mark out to lunch or to an event, so that Mark can have some fun and get away from the having to take care of me!

Well, I have got to get some sleep! I must take a nap between my work day and dinner time! Thank you everyone - for being there for me!

Love,

Cyndi

At war with myself/the new me!

How is everyone? So much to think about, say and do, right? Managed to clear off a pile of clothes I'd been needing to do something with in the bedroom. Ridiculous that I don't get rid of old t-shirts when needed or things that don't fit - ugh! Mark told me not to over do and he prepared us pecan pancakes for breakfast and then went into cleaning mode! I ventured out for a quick errand and wanted to go to Wal-Mart, but my knee said no way! Mark just got back from walking Hanz and Bella and is fixing dinner - yay! I've got to go do my part and fold laundry. Can you believe it's Ash Wednesday next week? Our dear choir friend Terry Schneider is having a Mass for our Intention on Wed. @ St. Pauls in Fl. Bluff. @ 7pm.

Well, I have finally reached the point of having to make some changes in my life regarding how I take care of myself! I need to listen to my body and not my mind! I've been rebeling and in denial by not working with the Therabite. Well it got to where I can barely get my mouth open to put food in it (I know, I know ....) because I wasn't working with the Therabite - so I don't have a choice! Unfortunately, since I have a little paralysis on the left side, it's a little tricky to get it going, but it has already helped in just 2 days! Plus, I was always staying up as late as possible because I was enjoying what I was reading so much, but no more! When I drop the Nook or magazine, and my eyes start drooping - stop! I was trying to lead as normal a life as possible, but there is just no way with the horrid avm. I've had to take a step back and say it's ok to put the book down @ 10:30 p.m., instead of 1:00 a.m. I've been @ war with myself, refusing to give in to the fact that I can no longer function in a normal way! I don't know what I was thinking putting myself through staying up so late and not getting the rest I need in order to heal! I realized as well, that after that bleeding incident @ the restaurant, I was very "weak". I was b-a-r-e-l-y getting by as far as my work day. I recently told Celia about how I was feeling and she was the one that came up with the word "weak" - I had not even thought about it, but that is exactly the word I needed. Remember that poster of the kitten holding on to the knot @ the end of the rope? That was/is me!

First, a great day for me is no bleeding. Ahhhh, that is a fantastic day for me! Actually, I am having a slight problem related to that. I don't know whether it is fear that I may bleed, or psychosomatic (sp?) that I read in the hospital discharge papers that the patient may have a hard time breathing due to a possible blood clot in the lung? Every once in a while, I feel out of breath and I stop and take a deep breath and relax a few minutes. It's like I forget to breathe - I have to stop and tell myself to take in a deep breath.

Ok, so I get home after dealing with my work day, greet my babies that are super excited that Mommy is home .... get in my jammies and relax! Mark is usually home right before I am, so he gets out of his uniform, puts on some shorts and gets the kiddos ready for a good walk! While I'm napping, the kids are on their walk with Mark and he later comes in and starts getting our dinner ready. After dinner & watching TV, we try and get our things ready for the following day. I start getting sleepy and now I'm ready for bed right then! I used to ignore how I felt, thinking I could stay up (and would) until 1 or 2:00 a.m.! What was I thinking? Yikes!! I now go to sleep @ 10:00 or so and sometimes wake up @ 2:00 a.m. I'll read a few minutes and go back to sleep and maybe wake up @ 5:00 a.m. I'll read again a few minutes and drop back off to sleep until the alarm goes off @ 6:45 a.m. I am listening to what my body wants to do, due to medication or whatever.

I was due for a haircut a couple weeks ago, and told my hairdresser I needed something quick and easy! Nothing is going to make my avm look better and the least amount of time I spend in the shower the better! So now I have a cute, short cut that makes my life easier!

You know, a couple of my co-workers tell me they can't get over how cheerful I am, considering what I'm going through. I'm always in a good mood and trying to enjoy the day. One co-worker said I was remarkable. Well, I'd like to think that avm or not, I am a pretty happy person! None of that happened overnight of course, and it's not so much that I'm remarkable, but I surround myself with fantastic people! My support group is phenomenal! I've got prayers that give me the strength to endure my situation. From my amazing husband that tolerates me, cares for me, makes sure I have all my equipment/medical supplies. Our entire family contributes not only monetarily, but emotionally, and spiritiually! Having their support - and this means friends too! - enables me to carry on with my day! My friends always make sure I know they care - just by being in their thoughts and prayer and I get surprises sometimes like a cheery card/e-mail, or Starbucks gift card! All these things put a smile on my face and make this "hell" I'm going through a little easier! I must say that I never envisioned my sister Celia stepping up the way she has. She truly knows the meaning of being a good Christian and showing her love in so many ways. Celia is always busy taking care of something/someone, either helping her husband Greg with their business, doing something for the boys, or choir and friends. She still makes herself accessible to me/us whenever we have needed her. It is a huge help when she goes w/me on the trips to CO - but she gives something she has little of and that is time! Celia has found time to make sure I'm ok. Not only assuring me with words, but taking me to appts., picking me up after having a bleed, staying an extra Mass so that she can join us - just overall being there, giving up her time to help me! So, with everyones help, I can have some happy moments, knowing that I'm not alone while we wait for this avm to be overwith! I'll be seeing Dr Yakes again during the first week of May - yeah, I'll be spending my 50th birthday with my second family @ Swedish Medical Center!

Thanks again everyone for all your love and support! All of you together help me function in as close to "normal" way as possible! I still have so much to do - a lot of correspondense to catch up with! Take Care!
Love,

Cyndi

I'm putting in some photos that you may have seen before, but I just haven't had time to take any new ones! Oh! Took Hanz and Bella to Petsmart yesterday and Hanz weighed in @ 12.8 lbs. and Bella weighed in @ ..... drumroll please ..... 12.6lbs! Yikes! Hanz is 2 and Bella is 5 months old!

Are you tired of me yet?

Good Morning everyone! Thanks for checking in - I really enjoy writing and keeping all of you up on the latest! Some time this weekend, I want to post a photo of me w/my babies! We'll see if I can accomplish that!
I was so happy to have made it through the entire work day Thursday w/no bleeds - yay! Got home, and started having pain in my left knee. I've been diagnosed w/a torn miniscus but have put off taking care of that for obvious reasons. I've neglected too many other things my body needs to have done due to this darned avm! I remember on my wedding day, trying to shift my weight off my left knee during Mass, since the pain was a little distracting. I would periodically have these pains, but being on such great pain meds, I was able to dismiss getting anything done. Well, actually about a year ago, I got as far as getting a cortizone shot and an MRI and an ortho appt., but just didn't schedule the surgery! Unfortunately dropped the ball on all that, probably due to some avm emergency. Back to Thursday night - went to bed and by 4:30 a.m., was in so much pain on my left knee, that Mark wanted to take me to the ER. Told him no way, I would wait a few hours for my PCP to open than to sit in the ER - this way @ least I could be somewhat comfortable in my bed!
Took another pain med. that let me sleep the next few hours! Called in to work, got in to see my PCP, got a cortizone shot and an appt. for an MRI @ 2pm. Arrived for the MRI, had asked whether I'd be stuck in the tube due to my claustrophobia. Really, from the neck up, I was outside the tube. I did run into some problems though - of course! Since we arrived early for the MRI appt. to fill out paper work, read magazines in the lobby until my turn, etc. Well, problem #1 was having to lay flat on my back - where I "normally" sleep almost sitting up. Plus, I should have checked the time on my pain meds - I was almost 2 hours late in taking that - causing me alot of anxiety! Since I was not propped up in a sitting position, my sinus's were draining to the back of my throat and I was going into withdrawls from wanting the narcotic in my system for pain. I called out for help but of course no one heard me! I had already been praying alot and just could not take it anymore! Finally was heard and the tech didn't want to let me out of the tube, saying he only had a few more minutes to go! Yikes! My mouth was so dry, I was pulling my hair out and going crazy! Was so happy to finally get out of there and get my situation under control! Whew! Went home to rest in bed - propped up - after having a snack. My knee was finally tolerable between my pain meds, the steroids I'm still on and the cortizone shot!
Woke up and didn't find Mark - thought he went to the grocery store, so called him on his cell. He was outside talking to our neighbor, and another neighbor had stopped by to talk and asked how I was. After Mark told her what we had been going through, she came back and handed Mark a plate full of home made tacos for our dinner! OMG! This was the perfect, neighborly, Christian thing she could have ever done! What a blessing! Gave Mark a break in having to cook and they were delicious!!! I told Mark that when ever I was well again, I wanted to really make concious decisions like that in always going the extra mile to help someone in need! Had our tacos as we relaxed and watched tv. Got read for bed and I realized Bella threw up! Had to remove the bedspread, thought she was ok, but nope! Threw up again - there goes the top sheet! Poor baby girl! Mark gave her a little "mylanta" that we had gotten from the Vet last time Hanz needed it. Bella still threw up a little more - but seems ok now. I stayed up until 2:00 a.m. trying to relax and to kinda watch Bella - but all seems well this Saturday morning. I'm going back to bed - just wanted to let you in on the latest! Take Care!

Cyndi

Got a disc of photos from the MRI - waiting for the Ortho appt. and will set up surgery for torn miniscus. Not letting this go this time - having to follow it through and will have to take care of it between CO trips and all!