Friday, December 30, 2011

Reflections of 2011....

If I thought that last year 2010 was a big wild and crazy year I was right but then 2011 started and we were off and running to see Dr.’s and once again. We both started out the year thinking that things could only get better from here and that we have a lot to be thankful for. I had more test to take and Dr.’s to see to make sure that things where heeling and that I was back on the right track.

 While I was heeling and getting better every day I noticed that the T.V. was way too loud and being sick and having meds on board that I did not need made me bitchy so I griped at poor beloved telling him to turn it down in a rather not so nice way. He told me that when he turned the T.V. down he could not understand what they were saying on it. This is where the not so nice comes in I said then get a hearing test with my teeth gritted together. You know that talk we have all done it when we are being short with someone. Well, that got beloved up and to it I made and appointment to see the Dr. for his hearing. On and off over the years he has had issues with being dizzy for about 5 years and we had seen ENT 30 min away so we asked the Dr. if we could see him again all the Dr.’s could figure with the dizziness is that beloved’s blood pressure meds are the cause of it. She agreed to it and we went over to see him and he set up a hearing test for beloved. To be honest this whole time I was thinking that my beloved has had hearing loss from being in the Navy, going to drag races even though he has ear plugs in, loud concerts with his brother and was due for a hearing aid. The Dr. did some in office tests which included having a scope go up the nose and down the throat an tuning fork test behind the ear on the bones, then made another appointment to send beloved next door to have the hearing tests performed at the hearing center.  He asked us to come back for another appointment for the results of the test. Well beloved can hear tones but, he cannot understand words in the one ear so right away the ENT knew that this was not good that there was possibly a tumor and he ordered an MRI. We went back to the ENT for the MRI test results and sure enough he had a VS tumor (Vestibular Schwannoma) growing on the nerve that controls hearing and balance and it is pushing on the brain stem. Hhhmmm This is the cause of the dizziness as well as the hearing loss Gggrrr I am so mad that it has taken at least five years maybe more and many trips to the Dr. and the ENT to find this out. I know that Dr.’s are only human but this is scary for both of us at this point. The Dr. sent us to the university hospital there are no other Dr.’s that do the surgery to remove this kind of tumor in our area.In Feb. we went to UH for testing for me and I got the all clear on the seizures I had the EEG and the only thing they seemed to have picked up was a louder signal for normal activity. Which they figured would happen seeing as how I now have had a hole cut into my skull. We also set up for beloved to see the ENT and the Nero surgery team. We found out that he needed surgery to remove this VS tumor and that is was at a size that had been growing for some time close to ten years and that it was the cause of the dizziness and the hearing loss. The bad news is beloved will lose all the hearing in that ear he may suffer from facial paralysis on that side and balance issues for life.

 I went back in and had seen the epileptologist and he at this time does not see a need for me to take the epilepsy meds and I can be weaned off of them. Yippee This makes me very happy because those meds are the cause of the emotional storms I go through and drag DH and my sister through. Bad news is that it can cause seizures while coming off them and you cannot drive. Well, that was not going to work because DH now needed me to drive him around I told the Dr.’s because he is having brain surgery on the 21st of March. So, the plan is stay on the meds and take care of beloved and drive him around to appointments then go off of them when he is heeled and can drive again. I tried I really did but, I knew that I could not take those meds and deal normally with everyday life so I slowly went off them without telling anyone at first. I needed to be off them to help be there for beloved and be his strong person his shoulder to cry on. I mean really I knew what it was like to have brain surgery and be freaked out I had just had it six months before. Up until this time he had never had any surgeries so he was freaked one because it was near the brain stem and two because he was scared that he would not wake up after surgery. Everything went well surgery took longer than they thought there was a delay getting him in and then it was a bit bigger of a tumor than they had thought and they had to take their time so that they did not cause him any facial paralysis. He was off work for five weeks for recovery and to regain his balance. Oh yes beloved could now have screws loose as well, we are a couple of zipper heads. LOL  I thank my sister for being there for me it was her husband’s birthday she stayed through most of the surgery. I also thank beloved’s older brother and sister in-law they stayed the day with me and late into the night until we could see him. His brother and I were a mess.  We finally got to see him it was after midnight after a while with him they headed home and I set up with him until I could not stay awake any longer I had to leave because you could not sleep in the NICU rooms unless you are the patient.  We went home four days later.

Beloved is totally deaf in his right ear so if you want to talk with him you should be on his left side to make sure he can hear you. His face did have issues for a bit but I made sure that we got him into therapy for that when they said he needed it for balance as well. All of that is better now the face is normal and he will always have a balance issue to deal with but as long as he is careful and aware he will be fine.
I June I walked in the Relay for Life walk this was my second year on our family team. I did 25.5 miles in 24 hrs. not bad for a fat old lady. LOL Beloved came and walked with me for a few hours as well. I walk for all family and friends that are battling cancer and those that we have loved and lost to cancer as well....

We had a great summer we finally put in the front yard I did most of it while he recovered, we enjoyed our 18th anniversary in July. Went to my sister annual BBQ took beloved’s brother and wife because they have now become closer with my sister and her family. We went on a family trip with my sis and her family to their coast house stayed the weekend with them and did some fishing it was great fun. I spent my summer with my sister youngest three days a week again and we watched her when they went to NM on their hunt. We also got the chance to take her to a museum and enjoy a day of fun there with her and see what it is like to see things through the eyes of a child. Went to the drag race with his brother and his wife.

Then beloved went in for day surgery that is number two if you have made it this far. Beloved went in for what they call BAHA (Bone Anchored Hearing Aid) this surgery was a breeze compared to the VS surgery he was in and out within a few hours and we went home. He does not yet have the hearing aid just the pin the sticks out of the skull that will hold the hearing aid. He will get the hearing aid in Jan 2012 the bone has to heel around the pin that they placed in the skull bone. Then once he has the hearing aid on the pin it will gather the sound and send it through the skull bone to the left ear and beloved will be able to hear things that off to the right side of his body again so his left ear will be doing double duty hearing for both sides.  
We also found out that my sisters oldest (22) still has cancer and will need another surgery and more treatments. We will be there and do anything we can for the little mama she is like my own child her auntie has always thought of her like her own.
Thank you for stopping by...

Tuesday, December 27, 2011


Really were does time go I think it slips away when we really are not looking or are way to busy to see it slipping. in two days I will have another birthday along with a cousin she happens to be one year younger than I am. We have this little thing we do to see whom will call the other first to wish the other a Happy Birthday and you would think being I get up hours later than she because of the time zones she would win always but, it really is not so...LOL

We had a a awesome Christmas we spent the eve. of it with my sister and her family as well as her in-laws. We had a great dinner of prime rib with all the fixings followed by some really good laughs. Then we watched the littlest two open gifts followed by there family and the in-laws doing gage gifts and a gift exchange as well. Then my beloved went home because he had to work Christmas day so i stayed the night and enjoyed watching my sister 10 year old and her 3 year old grand daughter open there Santa gifts the next morning. Oh there oldest, her husband, my sister, brother in-law and I all had gifts as well to open. It was great fun followed by the tradition of sausage, egg and cheese burritos for breakfast. Then my beloved got done at work in the afternoon and he came to join us for a bit (and gifts for him) before we headed home.

I hope that you all had a wonderful Christmas with many new memories added.

Tuesday, August 16, 2011

What a Year!

Those of you that are family, friends or, you just follow me on my blog know that one year ago today was the day I got sick or should I say the day that I don't remember at all. It was the day I had the very first seizure and then the week snow balled from there for my family as well as myself I do not remember most of the week. The good news No strike that the great news is it is one year later and that I am alive.
I just hopped off the treadmill I have been trying to get back to working out I am having a hard time of it but, it really does feel good to be back at it.

This blog post goes out with much love to my family that kept taking me to get me help until someone would listen to them that I had not gone crazy that I really was sick and that there had to be something wrong physically not mentally.  XOXOXOXOX

So what I have learned from this is to say I love you to the ones you hold dear daily and to live each day to it's fullest you never know when it could be your last day or, your last words to someone you love. And fight for yourself in the medical arena you have to be your own advocate no one else knows you better than you and when you can not fight for yourself make sure that you have the right people in your corner.


Friday, July 29, 2011

Doing really well!

We are doing really well we are on to the next steps in our lives my beloved with his surgery and us with the getting on with living and life and what our future holds right now we are looking into a few things and I will let you all know more later about what those things are but, for now it is a work in progress so I will keep it all under wraps until then a few close friends have been told and some family but that is about it.... back to a bit of crafting or just being creative anyway last week I drew two pictures with my sisters youngest we she drew more pictures then I did but I drew her two and I wrote on them that I will always love her love her aunty R:0) and it is so true I adore that kid and her sister and her family as well...


Sunday, July 10, 2011

We are both doing well....

I can not hardly believe that it has been 9 months since I got so sick and almost died and 8 months since the surgery to repair the herniate piece of brain that was in my upper sinus's and making me so gosh darn sick with meningitis and causing me to have seizure's.
Then to top all that of to find out that my husband had and acoustic neuroma and had to have brain surgery as well within six months of my surgery well blow me away with a feather because, it did not take much to knock me down at that point. A lot of shock was about all I felt that day when the Dr. told us that he to would need brain surgery. I was strong for him from the get go I mean really even though they are not the same surgery I could help walk him through what I knew I had just been there and understood if no one else did what it felt like to know that there was a problem with the brain and in that area I mean really its the only one you get and panic sets in rather fast. I mean I just figured that my beloved was going deaf and that is was from being in the Navy and working around planes for most of his life in the Navy, Boeing and our local little airport I had no idea when I told him he was old and that was why he could not hear. I really had no idea that it would be something like a tumor on the audio and balance nerve sheath and that it had been there for a number of years and all those times he said he was dizzy and he felt his balance was off and the ENT and PCP could not figure it out that it was just growing and getting larger and starting to push on the brain stem. Well it has been almost three and a half months since his surgery and he is doing well he did lose all the hearing in that ear and there is no way to regain that they had to scrap the nerve sheath and that took out the hearing for good, he can get a BAHA which is a bone anchored hearing aid it is another surgery or he could get two hearing aids one that relays the info to the good ear like and FM transmitter. He is thinking of going with the BAHA because he said he is not sure he wants to have something in both ears he is a lot like me in that way I hate things in my ears as well. The BAHA is a small rod placed in the skull and when all healed it has a smallish hearing aid the hooks onto it and the sound travel through the skull bone to the good ear.

I have been off all anti-seizure meds since about the time we came home form the hospital after his surgery almost 3 1/2 months. I have had no seizures since the very last one in mid Aug. 2010 when I was admitted to the hospital 30 min. away and they figured out what was wrong with me and how to work towards getting it fixed and they put me on heavy doses of PIC line antibiotics for almost a month.

So all in all life has been good I have gotten back to crafting on a small scale I have yet to take photos to share and I have already sent most of the cards that I have made out but, I will soon get back to making this a crafting blog again as well as updates on my daily life. I did make a awesome crazy hat for my niece to wear at the Relay for Life I will see about crop'n her out of it to post a picture on here as she is not my child and it is not my right to post photos of her on my blog but, the hat won the lap round and it was super cute just super sweaty to wear poor kid'o...

Thank you, R:0)

Monday, June 27, 2011

Relay For Life was so worth it!

I did 59,588 steps just about 25.5 miles not to bad for a fat old lady. LOL The bodybugg was awesome to have for knowing just what I did do, thank you sis. I am not to sore over all and I have no blister but, I do have some sore muscles here and there. We did have great weather for it the night was a bit cold but that was when I stayed moving the most, I was there for 24 hrs.

Our team was the highest raising team for money we were a gold member team and I don't know that that included our cash from cash night or any of the other fundraising at the event. We won the red, white and blue laps contest, crazy hat laps contest, hawaiian laps contest. Our team raised the most money in the Miss Relay contest that is the funniest one, my nephew in-law won in grandma in-laws long red sexy nightie and a friends snake skin high heel boots, big pink purse with a stuffed dog in it all while sporting a hot  pink mohawk with a flower in it. He had to run around the track and try to get the most money that he could from other relay walkers. His wife is the one that we walk for along with her grandpa, this young man I think would do anything for his wife. The team also helped her ( my niece's) best friends boyfriend dress up he had on the green dress my sister wore in my beloveds and my wedding almost 18 years ago it did not fit him at all but it was funny my sister was able to help it look as if it fit by pinning the bow in the back over the zipper he came is second place with money and there were a lot of guys that did the Miss Relay pageant and run this year 11 or 12 guys went out there in dresses to raise money for cancer. Really we all walk for many different people on our team we each have been touched by this in some way.
Cancer has touched my family in so many ways this just happens to be one of the ways I have found to give back to help out to help to find a cure so no one ever has to hear those words and have the worry that comes along with it.

Thank you for all your support if you did so on my teams behalf....


Friday, June 17, 2011

Things are going well!

It is scary to say that, it is almost like waiting for the other shoe to drop sorta thing but, being a positive person I will say that life has been very interesting over the last year and that I chose to deal with everything head on some how I feel like everything is turning around all feels right in the world for us right now. We have good health for the time being and we will continue to try and make ourselves healthier. It is nice to see that we are both recovering so well from our brain surgeries each day is a step in the right direction. Okay, so my foundation was shaken and I have a hard time seeing and staying positive but, I am trying really hard to rebuild all of that inner strength that I once had and i am strong enough to admit that. 
I am spending the summers once again working part time and taking care of my sisters youngest three days a week, she is 10 this year and so full of life we have only had four summer days together so far but they have been really good days. She took up piano this last year and I really enjoy listening to her play I also enjoy watching her play sports right now she is doing softball season. My sisters oldest is the coach this year for her little sisters team I can see the same passion and drive in her while she is on the field that I use to when she played in school she seems to really be enjoying coaching them this season.  As for the oldest she is doing well and her family is doing well they are at some point soon going to try and make it grow by one more her little one is 2 almost 3 and funny as heck she is so full of life.

I will be walking next Friday in the local Relay For Life that is one town over I did this last year as well I have raised 175 this year only 20 short of last year it is for such a great cause. I walk to support Lil Mama (oldest niece), her grandpa, my cousins wife and many friends. I also walk in memory of my mother in-law, grandmother in-law, cousin in-law and uncle. I walk with my niece and her family to support her and the others that are survivors and those that our family has lost to cancer we should all find a reason to raise money and walk for the causes that touch our hearts in that one way that matters most. If I sent you link to my Relay page there is still time to make a donation if you wish to.

Thank you, R:0)

Monday, February 21, 2011


Well, Thank you, all so much for the nice thoughts but believe it or not I am doing really well... :0)

The sad thing is my beloved will at some point soon be going in to have surgery on a tumor in his skull. :0(

He kept telling me over the last several years that his hearing was getting bad in one ear and that he was dizzy so time and time again we went to see Dr.'s and time and time again they said your ears look fine and it is more than likely the blood pressure meds that make you feel dizzy. WOW! they where so very wrong and I asked this last two times we went in to see his Dr. that she just please listen to us and hear what we are saying. I mean really after all I have been through the last six months I am even more careful to listen to my body and his to when he tells me things. We got sent to the ENT and he ordered a hearing test well beloved can hear tones but, he can not understand words in the one ear so right away the ENT knew that this was not good that there was possible a tumor and he ordered an MRI and Tues, he had one and Fri. we went back to the ENT and sure enough he has a VS tumor growing on the nerve that controls hearing and balance and it is pushing on the brain stem. Hhhmmm This is the cause of the dizziness as well as the hearing loss Gggrrr I am so mad that it has taken at least five years maybe more and many trips to the Dr. and the ENT to find this out. I know they are human but, really could you just once in awhile stop and listen to the patients. No, we do not have the same Dr. and if we did I would look for a new right away I mean really mine missed something so big and so did his... Ggrrrr.

So now we wait for the surgeon to get back with us to see what course of action we take I am almost sure from what the ENT said that surgery will be the way to go because we are young, even though this is a slow growing tumor most of the time it is not cancer which is good news at this point we will find out soon but not removing it is not the way to go because it will keep growing and pushing on the brain stem this is the part where I am now wiping the tears off the key board... Sorry, It scares me to think of being with out my best friend, the man that I love, my beloved...
I can live with what the ENT told us which is that he will more than likely lose all the hearing in that ear and that he may end up with facial paralysis on that side and balance issues for life but, I can not bear the thought of being without him that breaks my heart. He is everything to me he has saved my life more times than I can tell you about stood by me when know one else would held my hand and more when I have cried taken care of me when I have been at my sickest it is my turn to repay him and take as good of care of him as I can. I will now be his rock and help him to understand what it feels like to have skull surgery, hold his hand and body when he needs it give him my shoulders to cry on.

He has never had any surgery this will all be new for him he has never stayed the night in a hospital except for when he was born and with me...

TY, Flexie:0)

P.S. I guess we will be a couple of zipper heads... hehehehe

Saturday, January 29, 2011

Doing well!

Each day that goes by I am very thankful for I am back to walking three to five times a week I do two to four miles each time I even have gotten beloved back out there and walking again. :0)
I have lost ten pounds since the first of the year and that is great because, while being sick and right before I knew I was sick I had put some of that hard to lose weight I had taken off back on. :0(

Sis got me a bodymeida for Christmas it is like a diet buddy for me keeps me in check I feel it on my arm and I am like no I don't want to eat that or, did you walk yet? And then it gets me up and going or it stops me from putting junk in my mouth....

My sister-in law does not get it she thinks it's dumb but she has never had a weight issue in her life she is so skinny that I don't think she could eat a peanut and not have it show in her tummy. LOL No she really is thin and I know that we all see or fat and flaws in our own way but, a little support would be nice she does give me some support but, not doing a poo poo dance on my new found help would be awesome as well.

What is that saying walk a mile in my shoes.

Sorry, I have not been making anything new to show you but, My health has taken the front seat for now I will get back to making things as soon as I feel like I have a firm foot hold again. Because crafting makes me really happy but for now getting life back on track is what matters to me...

Thank you for stopping by...