Merry Christmas!!!

In Loving Memory of the family and friends who can't celebrate Christmas with us this year!!!

I just can't shake the fear......continued

Had a bit of a scare last night. My leg has been hurting quite a bit over the last month. It usually comes and goes, and pain killers usually take care of it, but the last few days it has been constant. When I woke up yesterday morning it was hurting more than usual and radiating through my groin and into my right leg...this obviously concerned me! Pain killers didn't touch it one little bit. Later in the day I ran to Corvallis to help my Grandma out and on my way home the pain became excruciating so I caved and went to the ER in Albany. After sitting there for four hours and having an doppler ultrasound on both my legs and groin, it turned out that the clot was fine. It had not grown and, in fact, appeared to be a bit smaller. The Dr had no idea where all my pain has been coming from, he thinks the most likely scenario is that there is permanent damage to my veins and I will probably have pain and swelling forever.....I hate honesty sometimes! I was already warned by my vascular surgeon that the damage that has been done is not reversible and that I would suffer intermittent swelling and pain for the rest of my life, but I had really hoped that he was wrong....guess not! After I left the ER I felt like a total hypochondriac, freaking out over every little thing! I can't help it though, I have had recurring problems with re-clotting and total occlusion even while on anti-coagulants, so I think the paranoia is justified to some degree.

I feel a bit better today! The pain killers are helping and knowing that the clot has not grown has eased some of my anxieties. I am still very scared of what's to come on the 27th, but I will cross that bridge when I come to it. For now, I am just going to try to enjoy Christmas as much as I can and give the boys a fun holiday! I can only hope that the new year will bring less pain, suffering and loss! Lisa and I are having a new years party that we have entitled "F**K 2011, Bring on 2012!" and hopefully that will usher in a new and better year!

Until next time. XOXOXO!

I just can't shake the fear......

I am having a really hard time with my anxiety......even with the Cloneazepam and the Lorazepam combined! It must be the upcoming procedure that has me all freaked out. I can't shake that feeling that once the filter is gone I will be a walking, talking, ticking time bomb!

 I have joined quite a few resource groups regarding blood clots (http://stoptheclot.org/ and http://groups.google.com/group/may-thurner-syndrome-support-group?hl=en) and they have been very informative and supportive, but some of the patient stories are truly frightening! Not just because many of the outcomes are less than happy endings, but that alot of the stories mirror my own in so many ways and some of these stories have those "less than happy endings"! I just wish that there was some way that I could have some guarantees. I want a guarantee that the procedure will go smoothly, that the recovery will be quick and easy and that the clot won't break loose afterwards and kill me.....it's a pipe dream I know, but it would be really nice if it were possible.

 In some of my research I did find a small glimmer of hope...there is a doctor at Stanford University Hospital named Lawrence Hofman who specializes in DVT's and more importantly May-Thurner Syndrome (which I have gotten a preliminary diagnosis of). I found him through the May-Thurner Syndrome Resource Group as he has seen quite a few of it's members. I called Good Sam today and started the process of getting ahold of my medical records and then, hopefully, he will review them. I don't know if he can help in any way, but it's worth trying right? The Stanford website says that their Interventional Radiology department has had success treating clots that other Dr's wouldn't touch with a ten foot pole. They have apparently restored flow in veins that have been blocked for 25 years.....that is unheard of!! My Dr's won't touch my clot because it is more than a month old and they don't want to risk further damage to my vein unless it completely occludes again....Well, that's all well and good, but I want a damn resolution and I want it sooner rather than later. I want to get back to my life, I want to go back to work, I want to have just one day without pain....are those things to much to ask for? I think not!

 Once the filter is removed in 7 days, my lungs are at risk. It's back to that "ticking time bomb" thing....and I really don't think that will be at all helpful to my anxiety levels.  I hate feeling like this! I hate having constant fear and anxiety. I hate not being able to help support my family.....to be a good wife and mother......it's just all so frustrating! Some days I feel like I am literally losing my mind. I have dreams that find me either dead, dying or running away from some unseen villain that is trying to kill me. The last dream was almost comical.....I was being chased by some faceless, maniacal killer and when he finally caught up with me he was covered in tattoo's that all said "DVT" in varying sizes and fonts. I woke up from that one laughing. But it's the underlying fear that has created these dreams and that fear is not something that I can laugh off. Believe me I've tried! I make jokes and turn my misfortunes into punchlines, but it's all a defense mechanism....a way for me to keep people from seeing how I actually feel, how truly afraid I really am. I hate pity, and I can't take it from anyone....not even the ones that love me the most! The only person that has even an inkling of how I really feeling is Brian, and even he does not know everything. Non of you do...some things I just cannot say!

Thanks again for reading! Much love to all!

The WORST year ever! Continued....

I hope this post finds all of you in good health and ready for the upcoming holiday! I am so not feeling Christmas! I usually love this time of year...I love the lights and the food and the celebrations with family and friends, but this year is just not worth celebrating to be honest. This has been the toughest year of my life, so far, and I just don't have it in me to put on a happy face and pretend that everything is okay. As if all the health issues I have been experiencing are not enough to put a huge damper on the holidays, this will be the first Christmas I have had in 32 years without my Grandpa! That is the worst part...Thanksgiving was hard, but Christmas will be even harder! I am still not sure how I am going to deal with it.......

Two days after Christmas, on the 27th, I will be checking in to the hospital to have my temporary IVC filter removed. I have to be there bright and early at 7am. From all the research I have done, it should just be an in and out procedure but I am not holding my breath. I will be discontinuing my warfarin (Coumadin) on the 21st and resuming the injections until after the procedure to, hopefully, prevent excessive bleeding. It's a precaution since they have to go in through the jugular vein to retrieve the filter. I am really not looking forward to this, and not just because it means another hospital visit and recovery, once the filter has been removed my lungs and heart are no longer protected from rouge clots! I am concerned because I still have the DVT in my leg/groin and if even a relatively small piece breaks off after the procedure, it could travel up into my lung and cause a pulmonary embolism (PE). Most people that develop a PE recover, but not without a long hospital stay and massive amounts of anti-coagulation, there is, however,  a small percentage of people who do not. I have found numerous stories of people literally "dropping dead" from a sudden and massive PE......this, of course, scares the shit out of me! After the 27th I can't help but think that I will be like a ticking time bomb! I know it's a very pessimistic outlook , but with the year I have had how can I possibly feel any different? I used to think that I knew my body, now I have no idea whats going on in there....I think that is what scares me the most.....

Anyway, thanks for listening to all my rantings yet again! I hope you all have a wonderful holiday!

A dream is a wish your heart makes......

I had a dream last night...it was one of those dreams where you don't know you're dreaming. Everything was so real...tactile....I was at my Grandparents house and something had happened at the neighbors house. There were police, ambulances and EMT's everywhere. As I scanned the scene I saw three stretchers sitting side by side, and lying on those stretchers were three black body bags, zipped closed and being guarded by some paramedics. I ran over to ask what had happened, of course I got no answer. I sat down on the curb and began crying....no one would give me answers and these were people I had known all my life. There was also the fact that I had just lost my Grandpa and this scenario was hashing up all those emotions as well. Suddenly the scene changed...the crisis was over and I was at a memorial block party to celebrate the lives of my Grandfather and these neighbors from earlier in the dream. I was standing there talking to some neighbor that was offering their condolences, I don't take pity well so I was looking at my feet, I heard my name and when I looked up there he was, my Grandpa. He was standing there wearing his black slacks, a University Honda shirt and his trademark blue wind breaker. My mouth fell open in shock...I reached out and touched his coat just to make sure he as real. He wasn't a ghost...I could touch him, I could smell him....in that moment I realized I was dreaming and started to wake up. As I woke Grandpa slowly started fading...I fought to stay asleep, but nothing worked. I begged Grandpa to stay with me and right as everything went black I swear I heard "I love you"....When I woke up, everything was normal. Brian was laying next to me snoring softly and Bella was curled up against my back, but I never felt so alone. I had to shove my face into my pillow to keep from waking Brian. I couldn't control the sobbing. I wanted so desperately to go back to the dream, back to a world where my Grandpa...my "Dad" still existed!  I finally fell back to sleep, but the dream was gone. When I woke up this morning I remembered every detail of the dream. The way things felt, the way they smelled, the way Grandpa's jacket made a crinkling sound when I touched it....this dream, unlike so many others, has stayed with me all day. It has haunted me, so to speak. I understand the dream though, I have still not fully dealt with the loss of my Grandpa. I have been trying to stay strong for my Grandma and for my children....but I am losing that strength, and the sadness is finding it's way to the surface.

When I saw the missed call from Grandma on the morning of November 3rd and heard the stress in the voicemail she had left me, I just assumed that one of the kids was causing her grief or that Grandpa had done something to upset her and she wanted to vent. What I did not expect was the words that came out of her mouth when she answered her phone and realized it was me..."Papa passed away last night." In that second my whole world collapsed...I couldn't speak. Grandma was very calm, but I could hear the heartbreak in her voice and I knew that it was true. She asked me to come pick up the boys because the police were there and she didn't want them to see anything. I hung up and lost it....when I went to wake Brian I couldn't even get the words out right. All I could manage was "Grandpa died last night"....I still don't believe it even when I say now. I still don't believe it when I pull up to Grandma's house...I still expect to see Grandpa standing in the driveway to greet me. He was such a vital part of my life and now he's gone! He was my "Dad" in all the ways that mattered....he taught me how to ride a bike, how to drive a car, he was there for all the milestones in my life...there are so many milestones left to be had and he won't be here for any of them. The one thing I really wish he could have seen is me finally being healthy again. I know he and Grandma had been worried this past year regarding my health. I sometimes wonder if that wasn't a contributing factor to his death, all that added stress and worry over me could not have been good for Grandpa's heart.

I never imagined that Halloween night would be the last time I would see my Grandpa. We had gone over there to take the boys trick-or-treating just like every year. Grandpa went with them for the first go around, but he got cold and tired so he came back to the house and sat with me while I handed out candy. If I had known that this would be our last visit I would have told him I loved him, I would have hugged him when we left, I would have made sure that he knew just how vital a presence he was in my life....I know in my head that we never know how much time we have left, but my heart can't accept the fact that I didn't take advantage of every moment we had on Halloween. We sat there on the porch talking about the most random topics. None of them were important...most of them were rather pointless, but we were laughing and sneaking candy when Grandma wasn't looking, so I guess those last memories are good ones and that is what really counts! The lesson I have learned through all the losses I have suffered in my life is to not take anyone for granted.....savor every moment because it very well could be your last!

I will love and miss my Grandpa every minute of every day, but I know that he is watching over me from Heaven........and when it is finally my time to join him I hope he's still wearing that old blue windbreaker!