Again...it's been way too long since my last post! I am a firm believer that if you blog, you should blog often, or people will stop reading your stuff! So please don't give up on my blog! I promise to write more often!

I just finished my last final yesterday. I got 95% in both classes! Yay me. I am exhausted thinking about next semester. It would be so nice to have free time again. The reason I am continuing my education, is because it has always been a personal goal of mine. Plus I want to set a good example for my girls someday. How do I tell them they need to go to college, if I never did? I know my dad would be super proud of me. He never went onto school, so I know he was proud of me and my siste when we did.

I had a melt down about my dad the other day. I made my grandma's peppernut cookies. The last time I made them was for the last Christmas my dad was with us. It's crazy how something as simple as cookies can send me into an emotional breakdown over my dad. The breakdowns do come less often now, but when they do, watch out. The dam breaks open, and it's hard to shut it off!

I think my dad came and visited me. I know that sounds weird. I started a prayer journal where I write down all of my prayers. I figure too often I say - "I'll pray for you," but then never follow through. This way, when I write down my prayers, I am truly praying for all the people I want too. Well one of my prayers went something like - please God, let me feel my dad's presence. Let me know he is with you, and continues to be with me.

Well it was a few nights later I woke up at 3 a.m. and just felt like he was there. Jason was out of town hunting, so it was just me in bed. The only way I can describe it - is the feeling you get when you know someone has entered the room, without actually seeing them. I just felt a presence. And I felt like it was my dad. I actually had to finally say out loud - "okay, thanks dad. Got the message loud and clear. I need to sleep now." Because I couldn't sleep because I felt like I was being watched. Ever since then, I've felt an inner peace.

This weekend we have Christmas with my dad's family. That is always hard. I have been a bad granddaughter and have not visited my grandparents in a while. It's so hard. I leave there crying. Seeing them in the condition they are, plus it just makes me miss my dad. I did make the peppernuts for my grandma though. Hope she likes them.

If I don't post before Christmas - I hope you all have a fantastic and magical holiday!

I know it's been way too long since I have update my blog! My life is just plain crazy busy! Between the girls, school, work, Nevaeh's Rainbow project, and everything in between, I have been swamped!!!

I am on my second month of Copaxone now. I wish I could say it was going good, or that it was helping, but sadly so far it is not. I have read that it can take 6-9 months to start working. My eye is still funky. I've also been having some other crazy and very annoying symptoms. For instance today my foot went completly numb. It still is. Feels like it is asleep and really heavy. It makes me almost walk with a limp. I also have this crazy painful nerve thing going on with my pinky finger on my left hand. And of course I still have the ever annoying muscle spasms and twitches. And the pure exhaustion and fatigue.

I've really been trying to keep my chin up and stay positive - but frankly, I am so damn tired of feeling like shit. It's been six months now. And I think I can count on my fingers the number of days that I have felt great. The rest of the days I have felt like crap. I just wonder if feeling like crap is my new normal? Feeling like crap is going to be a good thing compared to feeling really horrible? I just wonder if it is always going to be this way. And that really depresses me.

I wish I could talk to Jason about all of this, but it's really hard. I don't want to freak him out about it all. I want to try to be strong for him and the girls. But I think I am nearing my breaking point and will have a mental breakdown sometime soon.

Since being diagnosed my exercise schedule has been really awful. The only thing I can really tolerate is Yoga - and that is even much harder than it use to be. So besides feeling like crap, I feel like I am gaining weight, and so my self esteem is going down the tubes too. It all just really sucks.

I wish I had more help with the girls when I feel so crappy. But with Jason being self-employed, he works long hours. And I can't make him come home to take care of the girls when he is working and supporting our family. Plus it just drives me nuts that I would even think of asking for help with the girls. I want to be able to take care of them. I just feel like such an awful mom sometimes. All I want to do is go home and rest.

There are so many crazy things going on with my body - it is hard to decipher what is really MS - and what isn't? I just really hate dealing with this. But again, I keep telling myself how much worse it could really be.

My mom started her new job as a Plasma tech. She really likes it. The pay is not great, but they have awesome benefits. I think she likes not having to stress about work once she leaves work. She doesn't take her job home with her. Jerry got a job at a hardware store in Shawano. That will be good for him too. Things are looking up for them - and I am so happy. They really deserve it!

McKenna and Macey both had birthdays in October. Man I can't believe they are 4 and 2 already. Time goes by so fast! Every morning or night when they see a star - they say that it is PaPa looking down on them! This morning McKenna was singing twinkle twinkle little start - and saying she was singing it to PaPa. It is comforting thinking about how maybe, just maybe, that really is him looking down on us. I miss him so much. Probably now more than ever when I feel so crappy. He always made me feel better...or at least make me laugh for awhile and forget I felt to crappy.

So that is about all for now. I promise to update my blog more often!!!

Rest in peace Grandpa Damro

My Grandpa passed away this past weekend. Even though it was expected, it was still sad. I think the reason I felt the most horrible is because I bawled way harder when he died then I did for my dad. And the funeral too. I know in part it is because with my dad I had cried for a year before. I cried with every surgery,every hospitilization, and every bad test result.

My grandpa was a great man! He recently got to go on the Honor Glory flight to see the World War II memorial. I am so happy he got to see it before he took a turn for the worse.



I am also so glad I got to say goodbye. It will alway be a cherished memory for me.

John Damro (1923 - 2011)
24, 2011, after a series of long illnesses. Jack was born Feb. 6, 1923, in Kaukauna, where he was a lifelong resident with his beloved wife and best friend of 65 years, Louise Damro (Berg). In addition to Louise, Jack is survived by his nine children, Dottie (Don) Beeching, Lynda (Bill) Schuh, Carol (George) Miraben, Colleen Maass (friend Jerry Cady), Joyce (Tim) Gaffney, Mark (Mary Beth) Damro, Ken Damro, Mary Mathews and Hollie (Blake) Jersey.

Jack graduated from Kaukauna High School in 1942. He served in the military during World War II as a corporal in the Headquarters Battery 217th Field Artillery Battalion and was a member of American Legion Post 2930. Jack recently celebrated his military service when he was invited to join the Aug. 25, 2011 Old Glory Honor Flight to Washington D.C. with fellow area World War II veterans and his doctor and friend, Dr. Al Cherkasky. Jack had a career in the Kaukauna Postal Service, retiring in March, 1983.

Jack is also survived by his 13 grandchildren, Tim and James Bauer, Rob and J.J. Schuh and Tammy Baylog, Nicole Onesti and Mandy Maass, Caitlin Gaffney, Mike and Natalie Damro, Breana Mathews and Brock and Cole Jersey; by 17 great-grandchildren, and by his brother, Dick Damro; brother-in-law, Roman Berg; and sisters-in-law, Leone Lamers and Marge Berg.

Jack was preceded in death by his parents, Helmer and Bernice (Guilfoyle) Damro; brother, Charlie Domro and sisters, Alice Berg and Ruth Diedrich; son-in-law, Ron Maass and great-granddaughter, Nevaeh Onesti; niece, Lynne (Tuttle) Domro and nephew, Dan Domro.

Jack will be remembered as a loving, honest, spirited and fun-filled husband, family patriarch, friend, and a God-loving man. He and Louise bowled at The Bowling Bar and Village Lanes, golfed at Countryside Golf Course and were Ranch Bar regulars where Jack was a member of the softball team. When they danced the jitterbug at Cabaret Dance Club the floor cleared as everyone watched and cheered their every swing move.

Jack was an avid sportsman, fisherman and hunter. He was a loyal Packers, Badgers and Brewers fan. He loved games, especially cards with Louise. The two of them were lovers of the outdoors. Jack and Louise took the kids on vacation "Up North" every summer and later had a cabin in Athelstane, Wisconsin. Jack instilled a love of nature in his family: singing and whistling with the birds, tending his backyard purple martin colony and spending family time in natural settings.

Some of Jack's more recent favorite times have been family reunions with kids running everywhere, water fights, games, long talks, an audience for storytelling and lots of laughter. Everyone who has known Jack is familiar with his storytelling, jokes and sense of humor. He was even able to create humor and happiness during his final days in hospice care at St Paul's Senior Services Rehabilitation Center.

Jack's service to Kaukauna continued after his retirement from the Postal Service. He was a St. Vincent DePaul volunteer, a Meals on Wheels volunteer and a proud member of the St. Aloysius Funeral Choir. Jack would ask to be remembered as an honest, just and positive man who made his family and friends feel happy about life and left them smiling.

My copaxone finally got approved by my insurance. I am so grateful to have good medical insurance. The drug will only cost me $15 a month. A home healthcare nurse is coming over tonight to show me how to inject it. I am nervous. I hate shots. I can't imagine having to do this for the rest of my life. But I know diabetics and a lot of other people do it, and after awhile I hope it is no big deal.

I am still doing about the same. Eye still flashy, muscles twitchy (although the medication I have is helping some) and still exhausted beyone belief. I would have to say that is the most frustrating symptom of all. Last weekend I went to a baby shower, and was exhausted. Had to lay down and take a 2 hour nap when I got home. Now tell me how something like that can exhaust you? It's so frustrating!

Today I read the obituary of my 8th grade English teacher. She died of kidney cancer. Another person that has died from the dreadful form of cancer. Everyone says how rare it is, but I hear of it more and more. I just wonder why more research is not going into this cancer, to find more treatment options.

I am sad for my old teacher, her name was Mrs. Ellis when she taught me. She just got diagnosed in April. She also has 3 young kids. My aunt sent me a link to her caring bridge site, I guess she has been following her story. I read some, but it was too hard. Brought back too many emotions, and was too familiar to me. Her caring bridge site for anyone else interested is:



On a side note, please say some prayers for my Grandpa Damro, and my entire mom's side of the family. He has been in the hospital for a week now with a brain bleed. The prognosis is not good.

The past month has been crazy busy! I can't believe this upcomming weekend is Labor Day already! Although I love Fall, I am so not ready for the Winter and return of my nemesis - snow.

I started one of my new medications - the one for my muscle twitching. It works pretty good, but it makes me so drowsy! And the dreams I have, man they are so vivid. I think I am so tired just from all the weird dreams.

The one symptom that I hate the worse of MS is the fatigue. Especially after an kind of activity, but especially excersice. Usually excersice is suppose to give you more energy, well not me. I've always noticed that when I work out on my lunches, I am falling asleep at my desk in the afternoons. On Monday I just walked on the treadmill for 15 minutes and did the stationary bike for 15 minutes. I was so beat in the afternoon, I think I literally nodded off at my desk a few times. It is so frustrating.

I've always been one that is very sensitive about my weight. The only thing that makes me feel better about myself is being able to work out. Now I feel like I can't even do that. And I can really tell in my stomach area that I have gained weight. I hate it. If being sick and not feeling well wasn't bad enough, now I can add low self esteem and body issues to the bag of emotions as well. I am hoping once I start all my meds, and have been on them awhile, things will get better.

Officially MS

I saw my nuerologist today. Based on my symptoms, and my positive spinal tap, he is definetly diagnosing this as MS. At first he was a little hesitant because all my MRI's came back clean, but when he found out my family history, and how all of their tests came back clean too, he decided to just diagnose it MS. I am confident in that diagnosis. As much as it sucks, I know in my heart that this is what it is. I've had issue after issue for the past two years, and all of it can be linked back to MS.

He prescribed me a drug for my fatigue, as well as a seperate drug for my muscle twitches. I will also be starting copaxane in the upcomming weeks. I hope that by starting copaxane, it will keep the disease at bay, and hopefully it will give some of my symptoms some relief also. I am still hoping for my eye to go back to normal.

I am so thankful for my mom. She was there with me today. I have watched her live her life with this disease, so I know it is possible..

Overwhelmed

So I think I've passed the "shock" phase of my potential diagnosis. Because all of the sudden, I just keep thinking how bad this sucks.

I am really sick of feeling like crap. The past few weeks have been very difficult. I am so exhausted. Exhuastion is actually an understatement. By 1:00 I am almost falling asleep at my desk. The drive home is awful. I almost need to call someone on my cell phone just to stay awake. Then when I get home, all I want to do is lay down and rest, but I have the girls to take care of. I feel really horrible for the girls. I feel like a bad mom not being able to play and be active with them.

Jason has been finishing a job in Wausau. So he has been leaving home by 6:30 in the morning, and not getting home until 8:30 at night or sometimes later. So it leaves me doing everything around the house, and everything with the girls. And I think that is why I have been feeling like crap. I know with MS, stress and pushing your body to the limits is the worse thing. It is so frustrating.

Last night when I went to bed, it felt like someone was sticking a hot poker into the bottom of my foot. It was not pleasant. Then anytime I try to fall asleep, I have muscle spasms through out my whole body. Mainly in my legs and arms. They twitch, pretty violently, and wake me up. But most the time I am so tired, I can sleep through the most of it.

Mentally, I hate feeling like this. My memory sucks lately. In fact at the beginning of this episode this summer, I even forgot my pin number to my debit card. I had to have them resend it to me. I use to have such a sharp memory, and this is really frustrating. I also have no attention span. I feel like a kid with ADD. It's really hard to stay focused on tasks at hand. All of these symptoms together have left me feeling a bit depressed and have such a short fuse. And I hate that. I end up having such short patience with my kids, and end up yelling at them. I feel like such a bad mom sometimes.

All this makes me also feel bad for Jason. He works so hard. Over 65 hours a week. Do I have any right to complain to him how tired I am? It just doesn't seem right. That's what makes me so sad and frustrated. I need help sometimes, and I feel to guilty asking him for it. I feel bad that Jason and my girls will have to live with this the rest of their lives too. It obviously just doesn't effect me.

I just so want to feel better, and get back to my old self. I am not sure if that is possible or not. But I am holding out hope that a combination of the Copaxane and drugs for fatigue will help.

Yesterday I had more testing done. I was suppose to get a MRI of my spine done, but the MRI machine broke. Imagine that - just my luck. So I actually have to go back tomorrow and have that done.

I had 3 evoked potential tests done. One on my vision, one on my upper body, and the other one on my lower body. I was scared! I thought this would be quite painful, considering they send electrical impulses through you, to see how the nerves react. It wasn't bad at all. I was actually really suprised.

Of course I have no results yet. This whole summer has just been one waiting game after another. I go back to see the neurologist on September 6th. The same day my fall semester classes start at UWGB. I hope I don't get overwhelmed this semester with going back to school, plus trying to figure out this MS thing and get treatment. I just want to feel better soon!!!

Diagnosis

Yesterday I got my spinal tap results back, and was told they came back positive for the markers of Multiple Sclerosis. I can't say I am all the surprised. I think I have know that this would be the diagnosis for quite awhile now. I've had several comlications and issues that I have been dealing with for a couple of years now. It can all point back to MS now. I am a little relieved to get the diagnosis actually, as I was beginning to think I was crazy with all the weird stuff I have been experiencing. They think my eye can also be from the MS.

So what's next? Well, next week I have to undergo some more testing. I have to have a MRI of my spine to check for lesions there. I also have to undergo 3 evoked potential tests. Those tests check the function of your nerve pathways. After that, it will be another waiting game until I meet with the neurologist on 9/6.

I am thinking I may check out a different neurologist. I really like the one I have, but he specializes in pain management, so he is not a specialist when it comes to MS. I think I may check out Marshfield Clinic again, as they have been so AWESOME in dealing with my eye. They seem like they actually care, and they are constantly calling to follow up with me.

I will have to decide whether or not to go on treatment. I know some people would think that is a no-brainer, but there are a lot of things to think about when weighing it out. First the medication is very expensive. So I need to figure out how my insurance would cover it. Secondly, it's not just a little pill that you swallow every day. Most the treatments are intramuscular injections. Thirdly, the medications all can have nasty side effects. These are all things that I need to think about. I do want to do anything I can in my power though to slow down the progression of this disease.

So how am I? I am actually doing good. Call it shock, or denial, or whatever, but I am ok! Like I said, it is actually a relief. Of course I worry about the future. That is only natural. I worry about my mobility, and being able to care for my kids. I worry for the health of my girls. I don't want them to get this some day either!

I've seen my mom live through this disease. I know it can be done. Will it suck? Yes! Will there be pain? Yes! Will there be moments of pity for myself and asking, "why me"? I am sure there will! But I am just thankful it is not a terminal disease. MS treatments have come so far in the last 10 years. I am hopeful that I will be able to live a fairly normal and very long life!!

This is just another bump in the road for me....

Family Vacation

Last Saturday we started a 4 day long family vacation! Our first ever with the girls! My mom and Jerry rented a cabin in Lakewood, and invited my family, and my sister's family to come up and stay with them for a few days.

We had so much fun!! We went to the zoo, went to the beach, went on boat rides, and hung out by the campfire. It was such a blast. The girls were well behaved, and I think they had tons of fun.

I did get teary eyed one time on a boat ride. I told Jason it made me think of my dad, and the tears just started flowing. I have so many memories of being on a boat fishing and camping with him. In fact, the beach we went to, I went to as a little girl with my family. So it was a little bittersweet. I wished it could have been a complete family vacation with my dad there, but he was with us in spirit. We told lots of funny stories about my dad around the campfire!!

Here are some pictures of our vacation:

I survived my spinal tap yesterday! It was not even half as bad as I thought it would be! I think the sedation worked by calming me down. I was alert the whole time, and remember all of it. But I didn't even know they were doing the procedure! The only thing I felt was when they took the needle out, and that just barely hurt!

Hoping within a couple weeks MS can be ruled out. My eye is still all flashy. I am going to start Valtrex tomorrow as an experiemental treatment.

I brought the girls to Bay Beach this weekend. It was so much fun! The girls had such a blast. McKenna, my little daredevil, would have gone on any ride I let her. She was bored with the boats and cars and ladybugs. She however loved the big slide and the swings. Macey on the other hand was more timid. She was very petrified of the carousel, which I kind of find funny in some weird way! But she had fun, and especially loved the train ride. The rest of the weekend she would randomly call out "choo choo".

Macey was so exhausted that she ended up falling asleep in the high chair at McDonald's. I thought it was hilarious!



I am very proud of my mom. She went on the Zippin Pippin rollercoaster! Her first time ever being on one! She said it was her last time too! But she was very happy that she did it! She has been trying to do something new everyday. She also cleaned fish for the first time last week! I give her so much credit.

I also went on the Zippin Pippin. I got to experience my neice Taylor's first time on a rollercoaster. It was great. I wish I could have taken a picture of her face! I think she kept her eyes closed the entire time. Love making memories with my family!!!

Still have a disco party in my eye. I talked to the doctor in Marshfield today, and he is going to wean me off of the steroids. He also agreed to try the Valtrex as an experiemental treatment. So once I am weaned off of the steroids I can try that. I really hope it works. Please say some prayers that it works. I am going crazy with this flashing! I am ready to declare myself a pirate and wear an eye patch every day!!

Nevaeh's Angel Anniversary

Today is 5 years ago that I lost my first little girl. I can't believe it's been five years already. The sadness and emptiness never goes away.

Please go out today and do a random act of kindness in Nevaeh's memory.

I am also delivering my first carepacks in her memory today. You can ready about it here:
http://nevaehsrainbow.wordpress.com/posts/

There never seems to be a dull moment in my life lately! I had Macey at urgent care on the 4th with a 103 fever. She was diagnosed with a double ear infection. After two more days at home (one day with me, and one day with her cousin Taylor) she was finally well enough to go back to daycare.

Last night I pick up McKenna and lo and behold she has a 103 fever. To avoid missing any more work this week, I decided to take her into urgent care. I thought maybe it was strep throat. But the rapid test came back negative, so most likely she just has a virus. Probably the same virus Macey had, but Macey had an ear infection with it.

So McKenna is home with my niece Taylor today. Thank god she is on summer vacation and she can help out!

I am just so sick of doctors, co-pays, medication, and taking PTO time for doctor appointments. Never did I think I would spend almost all my PTO this summer on seeing doctors - most of which trying to diagnose my stupid eye.

My eye is still not better. If anything, the flashing is getting worse. So I will try the steroids for one more week, and if there is no improvement or it seems to keep getting worse, I am going to ask to be weaned off of them. A certain peace has come over me about my eye. I guess I have just come to accept that I may have a permanent disco party in my eye. It's not the worse thing I guess. I mean at least I still have some vision. It could be worse. Just another bump in the road we call life.

On a happy note - my mom had a job interview last week. They called one of her references this week, so I think that is a good sign. Keeping my fingers crossed that it comes through for her!

So I am on my third day of the steroids, and so far no change in my vision. Kind of sad about that, but I wasn't very optomistic. I have been doing some research on line on this condition, and some people have had success in using Valtrex to treat it. Which is weird since it is a herpes medication, but what is weirder is I did have a cold sore the week before I lost my vision, so it is possible it could all be related. So when Marshfield clinic calls this week, I think I am going to mention it to him. I mean why not try it?

Yesterday I enrolled for my first classes at UWGB this fall. I am going back to pursue my Bachelors degree. It will be a Bachelors of Applied Science degree with an emphasis on corporate communication. I am very excited, but also very nervous! I work full-time and I am a mom, so I just hope it is not too much to handle. All of my classes will be on-line, so the good thing is I can always use my lunch hour if needed to do my classes. I am very excited. This is something I've been wanting to do for many years, and have finally just taken the plunge and decided it was now or never. It's funny, both my sister and me are going to college at the same time, pursuing Bachelor degrees. My dad would be so proud of us!!

Yesterday I went to Marshfield Clinic for my eye. The doctor there was really nice. He seems to think it is this very rare eye condition where a small part of your retina gets inflammed. He called it "retinaitis". He said he's only diagnosed two other women with it in his career, and both were pregnant. No, I am not pregnant (that I know of)! He said in both of their cases, it subsided once they had their baby. Since that is obviously not a possabibility for me, he gave me some oral steroids to try. He said he can't guarantee it will work. But he hopes eventually the condition will just improve on it's own.

He still can't tie this condition to all the other weird stuff I have been having such as the vertigo, weird perception issues, memory issues, and speech issues I have been having. So I decided I am still going to go forth with the Spinal tap. Just so I have peace of mind - knowing that everything is ruled out. I have that scheduled for July 20th.

Eye Update

Yesterday I met with the neurologist. He suggested the next step should be a spinal tap. He did see some very small, very faint white spots on my brain on the MRI, which could be a start of MS.

I know I have to do the spinal tap - but I am so scared! I am so scared for the pain of it! I am so scared to find out the answers and diagnoses. I know I am so close to getting answers...I know I have to go through with it.

Next Wednesday I am seeing a retinal specialist, and on Thursday I am going to Marshfield clinic to see a neuro-opthamalogist. Getting "my eye" diagnosed has become almost a full-time job. I never would have thought I would be wasting all my vacation time this summer on a stupid eye. This Sunday marks one month since the flashing light and loss of vision began. I just pray there is something they can do to fix it.

Jesus in my heart

So last Friday Jason and I had dinner with Pastor Dan from the Assembly of God church in Shawano. I started attending the church this past winter. I love the church that I grew up in - but it is just to far away to be practical for my family.

This church is much different than what I am accustomed too. They sing a lot. But not just sing - they praise and worship God through their songs. At first I thought it was a little weird, but now I love it. Every service I see someone moved to tears. I have cried many times at one of the pastor's messages. That is why I have been so touched with this church.

I had a lot of questions. This pastor talked a lot about the rapture. It was a concept that I didn't remember learning a lot about growing up. I had a whole list of questions. My sister in law who attends the same church, offered to have us to dinner with the pastor.

It was so great to sit down and have a "Bible 101" talk with someone. I never understood the old and new testaments. I never understood a lot about religion. I think I learned it all at an age that I didn't really feel the need to know it. And at an age I was just going to confirmation classes because it was the thing to do.

The part that I took away most from the conversation was that you can believe in Jesus in your mind, but if you don't have him in your heart, it doesn't do much good. I totally get this. It wasn't long ago that I had a "come to Jesus moment" where I really felt him in my heart. I've always believed, and I've always tried to live my life through Christ, but now I really have him in my heart.

I wonder if my dad had him in his heart. I think he did. He never came out and said it - but I know the last month of his life he was very spiritual. The pastor said it doesn't matter when you claim Christ as your savior, as long as you do. I feel like I am starting a new chapter in my life. A chapter I can't wait to share and teach to my children.

Eye update

I had a second MRI with contrast last Friday. No surprise - it came back normal. So my opthamologist suggested I go see a neuro-opthamologist. Since there are none in the area, and they are hard to get into, I decided to see another opthamologist for a second opinion.

He got all of my info faxed over, and examined my eyes again. He came up with two potential diagnosises - Accute idiopathic blind spot enlargement syndrome or acute zonal occult outer retnopathy (AZOOR). He is leaning more towards the blind spot syndrome. Both things are very rare. In fact, I can hardly find anything on the internet about them. He said he has never diagnosed these before in his career.

So the next step is to see a retina specialist. The specialist may be able confirm one of these diagnoses. The good news is I won't go blind. The bad news is that the flashing light and the blind spot may never go away. I haven't been able to fathom that yet. I am just pretty happy to finally have some answers and to have found a doctor that took the time to diagnosis me.

Fathers Day

Well this weekend is Fathers Day. Such a bittersweet day for me. I love celebrating and honoring the fact that Jason is such a wonderful engaged dad to my kids. But the day also brings me so much sadness.

No card or gift to buy for my dad. No calling my dad and wishing him happy fathers day. No cookouts with my mom and dad to celebrate what a great dad he is. I can't give him any hugs and words of appreciation. Now all I can do is quietly remember him in my own mind. I hope and pray that he feels my love and appreciation - although we are seperated by life and death.

I try to remember my dad as the strong and amazing man that he was. But sometimes the visions of him weak and sick are all that I can picture. It seems like just yesterday that he was here with us. I just miss my dad. And I don't say it often enough. I miss my dad.

Prayers

Hi everyone. Looking for prayers for me. I am on my 15th day of loosing sight in my left eye. I've had a lot of crazy issues going on, and I am praying for a resolution and diagnosis.

For 3 months now I have been having some episodes of wicked vertigo and dizzy spells. On May 5th when I thought I had a migrane. I started with some weird visual disturbances and numb lips. But I never really got a headache. The next two weeks I had some weird issues with my vision and hands. When I looked at my hands and arms they looked funny and they wouldn't do what I wanted them to do. It was very weird, and very hard for me to even explain it.

I went to the doctor and explained my vertigo and weird vision symptoms. I was told by her that maybe I had anxiety issues and should take some xanax. I was so mad. I knew that I did not have any anxiety, and I was not crazy. So I left there and made my own appointment with a neurologist, who in turned ordered an MRI.

The following week I was outside playing with my kids when I saw a flash of yellow light in my left eye. The next day my left eye had a constant strobe light in it - and I couldn't see out of the flashing part what so ever. Of course this was really worrisome to me, and very annoying. It's really hard to look at a computer screen, and even drive when you have only one eye.

I saw the neurologist last Monday, and she said everything on my MRI came back normal - although they didn't order one with contrast. She kept hinting that she thought this was all maybe related to a migrane - although I don't think that is the case. They drew 6 vials of blood from me to check everything you can imagine: Lymes disease, Lupus, thyroid, viatamin defficiencies, complete blood count. She also ordered a sleep deprived EEG and me to see an Opthamologist.

I saw the Opthamologist last Wednesday. He dilated my eyes and looked at my retina and my optic nerve. He said that everything looked fine. He chalked it up to my eyes aging, and the gel settling in my eyes. He told me to come back in a month - and to also come back on Friday for some visual feild tests, even thought he thought those would come back normal.

I was so frustrated. I got the feeling that he wasn't taking my eye sight very seriously. To make matters worse, Thursday night my right foot went numb. It feels like it is asleep - constantly.

I went back on Friday and had the vision field tests. The nurse indicated something wasn't right, and told me she wanted me to see the doctor before I left. The doctor came in and told me I had no vision in my left optic nerve. I wanted to say to him - duh, I know - that's what I have been trying to tell you. I also told him about my new symptom of the numb foot. I could tell that all of the sudden he believed me and was more worried about what was going on. He said he was going to call my neurologist and would have them call me this week.

So that is where it stands. I have to go back to the eye doctor on Thursday. I hope they can give me steroids or something to get my vision back. I just want to know what is wrong with me. Whatever it is. I'll get through it - but I want to know. There's nothing more awful than not feeling well, and having doctors tell you that you are crazy, or not taking it seriously.

Happy Birthday Nevaeh

Today would be Nevaeh’s 5th birthday. It’s hard to imagine that I would have a 5-year-old. I wonder what my life would be like if she was still here. I know it wouldn’t be easy – but is life meant to be easy? I know we would have a lot of challenges, and each of her milestones would be so much sweeter. All I can do now is remember the short six weeks she was here on earth with us, and look forward to the day I see her again. It brings me peace knowing that my dad is now up in heaven with his sweet granddaughter. We forever have a guardian angel looking over us.

Although the pain has eased in the past 5 years, it has never – or will never – go away. A parent should never have to lose a child. It is a pain and a deep ache in your heart that can never be explained unless you have experienced it for yourself. It’s like there is this missing piece of you. The day I lost Nevaeh, I lost a piece of my soul that I can never get back.

Everyone please take the time to hug your beautiful children today and tell them how much you love them. I know I plan to do that with McKenna and Macey. I also plan on singing happy birthday to Nevaeh tonight with the girls. I think McKenna is finally at an age that I can start teaching her and telling her about her big sister Nevaeh.

I am also very excited to announce Nevaeh's Rainbow Project. I really wanted to do something special in Nevaeh's memory. And I got thinking - why don't I sign up to provide care packages to the local NICU? I've always wanted to do something, and a light bulb clicked on. So I contacted St. Vincent's hospital, and they graciously accepted me offer to provide care packs and memory boxes. So I am in the process of buying all the things for the first few packs. I hope eventually to get donations to cover some of the items, or get items donated. It's a great cause, I just don't have a lot of money to support it. But I plan on giving every spare penny I have to the cause. I started up a website, that is a work in progress, but please feel free to visit it and pass it on:
http://nevaehsrainbow.wordpress.com/

Well even though my mom has a new set of stresses - I am very happy to see her back to herself. Her job was taking such a toll on her mind and health, it is nice to see her back to normal. She is still searching for jobs, so please keep her in mind if you know of anything.

This past Sunday would have been my parents 35th wedding anniversary. I bought my mom roses. It was a promise I made to my dad before he died. He was such a romantic, I wanted to assure him I would still buy flowers for my mom.

Next week Wednesday would be Nevaeh's 5th birthday. I can't beleive she would be 5 already. Somtimes that part of my life seems like it was just a dream....

In honor of her birthday I want to do something special. I found an organization that gives angel memory boxes and NICU care packages to parents in the Madison area. It's really cool. I would love to do something like that in Nevaeh's honor. I just don't know how to get started. But in the meantime I think I plan on donating some items that they use in the packages and memory boxes. They have a very neat website if you want to check them out:

http://mikaylasgraceblog.blogspot.com/p/angel-memory-boxes.html

Ok, so my mom got fired from her job yesterday after 22 years at Humana. I can honestly say - I've never wanted to go a hunt someone down and punch them in the face, as much as I did to my mom's former boss yesterday. I am better than that though. Instead I will use my words. I plan on sending her boss' an e-mail thanking them for treating her with such a lack of empathy and compassion the entire time my dad was dying.

I know in the long run, my mom is going to be so much happier without this job. She will be under way less stress. She'll new stress with money and no insurance, but I think she will be happier in the long run.

Please say some prayers for my mom that the right opportunity comes her way. I hate that she has had to go through so much pain and stress the last 18 months.

Well my mom got let go from her job today after 22 years. Please say some prayers for her.

I've been having a really tough time missing my dad lately. Not sure why. It was strange, yesterday was Mother's day, but I was really missing my dad.

I visited my grandparents on Saturday...that is always so hard. I look at my grandpa, and I see so much of my dad. Everywhere I look there are family pictures with my dad in them. I know I need to get over that, because my dad would want me to visit them more, but it is just really painful. I ended up bawling on my way out. I feel so bad, because I know my grandparents like to see me - probably for the very same reason it is hard for me to see them - I remind them of my dad. I know they probably feel like they get to see a peice of him by seeing me....and it's kind of the same way for me when seeing them. But for me instead of it being comforting, it just hurts really bad.

Please say some extra prayers for my mom. She's going through a particular rough patch right now. Her employer was not so nice to her when my dad was dying, and that continues to be the case. I feel so bad for her, and so helpless. Everyhing she has been through the last year, it's no fair. I know she is a strong woman, and god only gives a person as much as they can handle, but this is getting to be so much. I am very worried about her. I pray day and night for her to find a new job. She just needs a fresh start. At a place that will have compassion and sympathy. I find it very pathetic that an employer would treat an employee that has been with a company for 22 years with such a lack of empathy or compassion after loosing a loved one.

This past weekend was Easter, and it brought back so many wonderful memories of growing up with my dad! My dad was the best Easter egg hider who ever lived! He would find the most perfectly clever spot to hide an egg - and when we would find them, we would laugh at his creativity.

He didn't hide plastic eggs either. He hid the real deal - the hard boiled eggs that we colored the day before. It's amazing to me that we never ended up with stinky rotten eggs in our house.

We begged my dad to hide Easter eggs long after we knew the Easter bunny didn't exist. I remember us being in high school and expecting him to hide the eggs for us. Ah - good times! It's the little things that I have come to appreciate so much about my dad any my childhood. I'm so thankful that my childhood and my dad is worth remembering.

I know it's been awhile since I wrote. I apologize! It's been crazy busy lately.

On March 26th I did the Relay for Life walk in Shawano. I raised $100 for the American Cancer Society. I would have liked to raise more, but I always feel bad asking people for money for these kinds of things!!

The walk went really good, and the girls had fun too. I actually broke down several times during the walk. The first time was during the survivor lap. I kept thinking - my dad should be here walking this lap. Then when they did the luminary ceremony, I really lost it. They kept saying that the luminary laps were a time to grieve, and a time to remember. I just bawled, and bawled. I was totally mentally drained when I got home. I know that I don't allow myself to break down enough...so it was a good thing.

"Heaven is for Real"

I read the best book this weekend - in four hours. It is called "Heaven is for Real" by Todd Burpo. This book is awesome! It is a true story about a little four year old boy that almost died of a ruptured appendix. After his surgery and recovery, he started talking to his parents about how he visited heaven. He told them what they were doing while he was in surgery. He told them all about his great-grandfather that he met in heaven, but didn't know anything about him before his surgery. He also told them about his sister he met in heaven - a baby that his mom miscarried, but never told the boy about.

This book will make you think, and make you truly believe that there is life after death. When it is told so innocently by a four year old with no misconceptions or reasons to lie - it is hard not to believe.

Go Seymour

The Seymour boys basket ball team has made it down to state again this year. I have so many fond memories of watching the state game with my dad. Seymour has gone to state alot the last 15 years. Ever since I was out of high school, and they would make it to state, I would take off the afternoon that they played, and go watch it with my dad. We'd call my mom during the game and give her updates.

Today as they go down to state again, I am missing my dad. Watching the game with him was our special thing. We always did it, just me and him. So today him being absent for that tradition makes me super sad, and makes me miss him so much more.

Relay for Life

So I've been a really big slacker and I have NO donations yet for my Relay for Life that I am doing to benefit Cancer on March 26th. If anyone wants to donate even a couple dollars towards a really great cause, you can donate on-line.

Please consider making a donation to help the American Cancer Society create a world with less cancer and more birthdays.

http://main.acsevents.org/site/TR/RelayForLife/RFLFY11MW?px=4791862&pg=personal&fr_id=31232

Last night I had a crazy dream. I had a dream my dad was trying to tell me all about heaven. I don't remember alot, but I do remember waking up really upset.

Could be all the stress in my life at the moment. Jason hasn't been working the past three months, and our savings our dwindling down to nothing. It took us three years to save up for a decent down payment on a house, and now within three months it is pretty much gone. I keep praying that something comes up. Since it is almost Spring, there is more of a chance of something. But so far he doesn't have any big houses or long-term projects. I am really worried. So is he. He's applied for a lot of jobs, he would really like to get out of self-employment, but in this economy, it is just really tough. Even though he has a Bachelor's degree, I think people look at his resume, and they don't really look at his self-employment as job experience. Although knowing Jason and what he does, I know that is not the case. I know he does more and works harder being self-employed. He works a lot of night, and a lot of weekends.

I hate to post all of this on here, but I am just really stressed out about this! In the 13 years we've been together, Jason has never not worked for more than a few weeks. And even in this tough economic time, we've been so fortunate. I know this too shall pass, and he'll hopefully find something soon. And all I can do is keep praying, and hope that the right thing comes along.

I am thinking of my sister and her boyfriend Greg. Greg lost his mom on Saturday. She's had a long battle with diabetes and kidney failure. She's been on hospice for awhile now.

I've come to realize, no matter how old you are, the death of a parent is still hurtful. It doesn't matter if you are an adult or not, but everyone needs and wants their parents.

I went to the wake last night, and it was the first time being at the funeral home that we had my dad's wake at. It was weird. It looked like the same exact casket that was rented (used when there is a showing but the person is being cremated)for my dad. It was weird coming to the realization that my dad's body could have been in that same exact casket.

I could still picture my dad in his leather jacket in the casket. It still seems so unreal. Sometimes I can't believe he is gone!

Life has been crazy this winter. Our house has been full of sickness. Seems like one of us has been sick non-stop since October. I am thankful that last year we had a great sick-free winter, otherwise we wouldn't have been able to visit and spend time with my dad.

McKenna is getting her second set of tubes put in her ears this Friday. The first set she has in are not functioning anymore. And we are on our second ear infection in the last 2 months. The ENT just recommened that we put in another set, and hopefully that will last us another year.

Made it one year

Well, yesterday was the dreaded one year anniversary of my dad's death. It went better than I thought it would. Originally I had plans to meet up with my sister and my mom, and for us to spend the entire day together. But as luck had it, we had a huge snowstorm Sunday night that dumped 12 inches of snow on us!! I finally was able to get the girls off to daycare at about 9:30. Then I got ready, and decided to head to my mom's house, and just take the drive slow.

I made it to my mom's at about 11:30. We decided that we were going to continue with our plans and go to the mall for a little retail therapy. It was a really stupid decision, as the roads were horrible!! But I haven't had a vacation day just for me in so long, I was determined to get some shopping done! We had a blast shopping and getting our mind of things for awhile. Man...did I spend too much money. Shopping when you are sad, is never a good idea!!

We did have many tearful moments through the day. I had my first meltdown when Jason pulled me close for a hug before I left. I always try to hold it in and put on a strong face. Then I listened to all my dad's favorite and some of his funeral songs on the drive. Me and my mom and sister had a lot of tearful reminiscing on our drive to the mall. I took time to remember him through my facebook status, as well as the poem I posted on here.

I am proud how I handled it. I think I made the day the best I could. I took time to reflect, to remember, but to also get my mind off things. I did happen to just gaze at the clock at 7:59 p.m. - the time of his death. And I thought wow...it really has been a year. I can't believe sometimes that it has been that long!

One year ago...

I lost my hero.
I lost someone who was there for me my whole life.
I lost someone who knew where I came from, and was proud of where I was going.
I lost someone who could light up the room with his smile and laugh.
I lost someone who taught me about the meaning of life.
I lost someone who taught me about the meaning of death.
I lost someone who taught me to smile when times get rough.
I lost someone who when faced with death, was more concerned about the family he was leaving behind.
I lost someone who can never be replaced.
I lost someone who can never be forgotten.
I lost a peice of my heart and life I can never get back.
I lost my daughters' grandpa.
I lost my dad.

Happy Birthday Dad

Today my dad would have been 62. Still seems too young too die. I don't have much to say today, other than I am really missing my dad today and am really sad.

This picture is from my dad's 50th surprise birthday party we threw him.

Last night I had a major meltdown about my dad. This is going to be a very long, very tough week. Yesterday was Valentine's day, tomorrow is his birthday, and then Monday is the year marker that he passed away. I don't know why the feelings of sadness cultivate around the year marker of his death. I mean I am sad all the time, but this week it is worse. I just keep thinking how last year at this time, we were planning a surprise birthday party for my dad...and he was still here. It just seems like so long ago. It seems more like a decade that I haven't seen him. It just plain sucks. When I read the obituaries in the paper in the mornings, and I see all of these 80 and 90 year old's passing away, I feel so cheated. I should have had 20 years with my dad yet. My dad should have been able to see his grandchildren grow. He should have been able to retire with dignity and enjoy life to the fullest with doing the things he enjoyed. Instead I feel like he got cheated. I feel like I got cheated.

Go Packers!!!!!!!!!!!!!!!!!!!

We are superbowl champs!!! Last time I witnessed the Packers winning a superbowl, my dad was there watching it with me, and I was 17. I was sad that my dad couldn't be part of this Packer season. He would have loved this season, and loved watching the game. I can still picture my dad watching the Packer game every Sunday when I was growing up. Sometimes he would be reading the paper during the game, peering over the top of the paper and over his bifocals when a good play happened. I can't help but wonder if my dad put a word in with the big guy this year, and helped the Packers along on their road to victory!!!

I am sure my dad is smiling down from heaven as the Packers move onto the superbowl!!

I am not sure what it is, probably the time of year, but I really miss my dad. I find myself saying it outloud. "I miss my dad right now." I think how I have dealt with my dad's death all of this time, is I really don't let myself feel. Everytime I start to feel that ache in my heart, I just shut it off. I know it is probably not healthy, but it is the best coping mechanism that I have at this point. I think it's how I deal with a majority of things in my life. It's easier to let yourself not feel I guess.

Two important days are coming up. My dad's birthday on February 16th, and a year since he died, February 21st. That is going to be a hard day. My mom and sister and I all plan on taking off. We'll probably watch the video my sister put together of him. I don't want too. It's too painful. Again, I would rather just shut my feelings off than have to deal with them. But I know it is an important day, and a day that should be spent remembering my dad. It just sucks. I don't want to have to remember him. I want him here right now. Everytime I see my girls, I get sad knowing how much my dad would love the stages they are in. He was such a great papa. And such a great dad. And there is this gaping hole in my heart that can never be repaired. And sometimes, as much as I try, the pain can't be shut off or ignored.

Go Packers

I can't help but wonder if my dad is really smiling down from Heaven this football season. We loved both the Wisconsin Badgers and the Packers. In fact, that is why I am such a huge Packers fan. I have so many fond memories of watching the Packers every Sunday with him. He would have loved watching the Badgers and Packers this year!!!

One of my dad's Packer sweatshirts has become my "lucky" sweatshirt. I wore it when I went to the game against the Giants. We did so well, that if became the lucky shirt - and it has been working ever since. You better believe I am going to be wearing that baby this weekend when we play the bears.

I hope we win....my dad would have wanted it that way!!!

The American Cancer Society - 2011 Relay For Life of Shawano/Menominee:

The American Cancer Society - 2011 Relay For Life of Shawano/Menominee:

I am so worried about my mom lately. Her finances and her job really concern me. She is absolutely miserable at her job. And I don't blame her. Even through my dad's death, her boss and company was horrible to her. They would make her feel guilty for not coming into work when my dad was on his deathbed. It's just crazy to me that an employer can treat their employees so bad.

She feels like she is trapped there. She is 57 and feels like a lot of companies don't want her anymore. And if she does find a job..they can't pay her what she makes now, and she can't afford any kind of pay cut whatsoever right now. She is already living paycheck to paycheck.

I feel so helpless. The kind of person that I am, I take on other people's problems like there are my own. I can't stop thinking and worrying about her. I keep praying to god, and to my dad, that something comes along to get her out of her job and into something better. I even wanted to win the lottery - just so I could pay off her house, and give her money to retire. I feel so lost not being able to help her. In a way I feel like I am not keeping my word to my dad that I would take care of her. I wish there was something I could do.

Dreams

Had some wonderful dreams of my dad this past weekend. They were wonderful because he was his old healthy self. I can't really recall what the dream was even about - but I know some of it was just the good ole days of camping as a family. I love these kinds of dreams. Anything where I get to "see" my dad again is a wonderful thing. After I dream about him, it sticks with me all day. I feel renewed in my faith that I will see him again someday!

I hate going a week without posting on this blog, but I don't really have anything worth saying lately!! The time of year is tough...it was about this time last year my dad quit his treatments. We thought we would have more time with him though...