Rest in Peace Grandpa

On Saturday, my Grandpa passed away. I am very sad, but yet very happy too. He has been wanting this for quite some time now. The last time I visited him, it was very painful. He was not himself. Very confused, and very angry. That was not my grandpa at all. My grandpa was always the kindest, most gentlest man I knew. The tears that I cried this past weekend were a mix of sad and happy tears. I am so happy he is with my dad again. That makes me feel so good. I am jealous in a way that he is up there hugging my dad again. I have so many fond memories of my grandparents growing up. We lived right next door to them until I was 9 years old. We would spend most of our summers with them while my parents worked. We would help them garden, make homemade saurekraut, and go to the farmer's market and sell their produce. The reason my dad was such a great guy was because he had great parents who raised them. My grandpa will remain in my heart forever. The world lost a truly wonderful man, but heaven gained an amazing angel.

2 years ago today

2 years ago today....I lost my dad. I lost a friend. I lost a link to my past. I lost a role model. I lost my hero. I lost a peice of me. I lost a piece of normalcy. I lost him. I lost so much more than him.

2 years ago today....I started a journey in this world without my dad. It has been a learning process. Somedays, I block out thinking about him, because it is still so painful. I still think of how unfair it was. Nobody should have to go through that in their last weeks of life. I still think of how much he taught me. He taught me how to live, and then he showed me how to die. I can only hope that I have that much faith, hope, and dignity on my deathbed someday. He never doubted for a minute where he was going. That gave me so much faith. That is the one thing that got me through the horrendous experience. Knowing where my dad was going, and how magical it was going to be when he got there.

On days where my heart literally hurts and feels like it is being torn in half because I miss him so much, I try to remember how I felt the moment he took his last breath before my eyes. I try to remember how peacfull it was. How we were so relieved he wasn't in any pain. How we knew he was standing at the gates of heaven. How we all truly felt in our hearts that we would be together someday in heaven again.

I only allow myself a few days of reflection like this. One of the days is today. I want to treat it like a normal day. But it isn't. It is a day that forever changed me. In bad ways..but in some good ways too.

Bad weeks

Tomorrow starts the start of a few bad weeks. Tomorrow I have to go say goodbye to my Grandpa Maass. The second grandfather I've had to say goodbye to in 5 months. He is not doing well, and they are going to take him off all his meds. It is going to be hard. I was always close to him and my grandma growing up. I have a lot of guilt of not visiting them more since my dad died. It is just so hard though. It makes me miss my dad, and I always leave bawling. I am trying to realize that my grandpa is 93, and has lived an amazing life. He'll be with my dad and uncle Jerry, and my baby girl.

Next week on the 16th is my dad's birthday. Then the following week on the 21st is the 2nd anniversary of his passing. Sigh. I really despise February. I don't like this month at all.

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!!