ozzy

I haven't been so great at keeping my blog updated. 

We were going to take a family vacation out to Ohio and then to Myrtle Beach. Rick's family lives in Ohio, and he hasn't seen them in four years. I got the clearance to go from my primary care doc and my neurologist. I was looking forward to going, but I was also very nervous. I got so sick the weekend we were going to leave. Rick held off leaving a day later so that I could go. But I was still feeling so tired, weak, fatigued, and I was still vomiting a lot. He and the girls were going to drive out, and then I was going to try and fly out when I felt better.

Well, my Husband and my girls got in a car accident on the way out there. A deer jumped in front of them going 70 mph. Luckily nobody was hurt. All damage occurred on right passenger side. I felt so guilty because i wasn't there with them. I hated that I couldn't be there to help them and to comfort them. But they are not injured, so I felt better. I wasn't able to fly out because they funds had to go to paying insurance deductible. 

I have had a great babysitter. Ozzy (dog) has been taking very good care of me. He lays on the floor right next to me. When he needs to go potty, he whacks the bed with his tail. He can always alert me when a migraine is coming on. He paces back and forth, he wont settle down and he keeps a close eye on me. He stays by side and goes everywhere I go. If I am not in his sight, he cries. 

Yesterday I was not feeling well at all. I got out of bed to try and do a couple things and Ozzy growled and herded me back to then. Then he stared at me forever to make sure I didn't try to escape.

Ozzy is such an amazing dog.  He is a border collie/australian shepherd mix. He is 14 years old. I keep telling him that he has to stick around because I need him.

Ozzy loves playing in the water.

We shaved his hair short for summer. I think he looks so cute.

Daddy and Ozzy, they are the best of friends.

I love Ricks Smile.

The Unknown.

I have been having the hardest time making myself sit down and write on my blog. You know, if you don't talk about it, then maybe it isn't so real? I still suffer from chronic migraines. If you are on Facebook, I am sure you are well aware that it is migraine awareness month. I am sorry if you are getting tired of seeing so many posts about migraines. I am not doing it for attention or to annoy you. I am doing to raise awareness. We are trying to teach the world how debilitating migraines can be, for they affect more than just your head. Migraines affect your whole body and it takes it all out of you. I am fighting so hard to raise awareness, so that Congress will approve for more funding and put migraines in a classification in and of themselves. The more I learn about migraines, the more I learn that very little is known about them. I can tell you that when you suffer from pain nearly every single day of your life, it wipes you completely out.

The past couple of months I have been doing worse instead of better. I have some auto-immune issues going on that they are still trying to figure out. I am seeing an infectious disease doc because I have had a fever for almost two months. I have to have my cane with me at all times. I don't always need it, but it helps to stabilize me, because my right leg goes numb quite frequently, without warning.

I had a biopsy taken from my leg because I have bruises that have been there for over a year. I have to have more biopsies in July. My kidney function is all over the place. I am short of breath with any physical exertion. It is even hard for me to talk on the phone. I am trying to stay strong and be a fighter, but right now I am scared. I had so much thrown at me this past week, that I just don't know what to do. I am scared of it all, the unknown, the known, etc. I am adding so much stress to my family. I can't even take care of myself. I have lost a lot of weight because I can't eat much. I have to force myself to eat.

I will post more later. I just wanted to provide a quick snippet of what is going on.

“What would you do if your dream of a totally pain- and symptom-free life, came true?"

Today is June 1st, the kick off to Migraine Awareness Month! There is a blogging challenge, where each day we are given a topic that we can blog about, some help in inspiring us. The blogs will be shared for many to read.

I was diagnosed with chronic migraines in January  of 2013. At the time, I was told that I would not be able to work for six months, because they needed to get my migraines under control. I thought they were crazy when they told me I would be off for six months. Hartford, the company that my employer uses for Short and Long Term Disability. When I applied for Short Term Disability, Hartford said there was no way I would get approved because migraines only happen once in a while, they told me that is what FMLA is for. I had exhausted my FMLA. I won't bore you with the details, but I was approved for Short Term Disability. I had to file for Long Term Disability and Disability with Social Security. Hartford approved my Long Term Disability long before they got all the medical information from my treating physicians.

As it is today, I am in bed over 90% of my time. I have 2-3 days a month where I feel well enough to have a life. I have other health issues that the medical team is still trying to figure out.


If my dream of a totally pain-and-symptom-free life came true, the very first thing I would do is spend the day with my family, laughing, playing games, enjoying our quality time together. I would cherish every moment of it. I would do so much with my family. I would try to make up for the 18 months that I was unavailable to them. That is one thing I miss the most, I don't get to hang out with my family much anymore. We used to spend so much time together. I miss those days. I would spend as much time with my girls that I could and cherish their smiles, their laughter, their happiness, because I know that I will never give that up. My phone would be on ignore so I could interact with my husband, girls, and other family member.

I would find somebody to watch my girls and I would take my husband on a romantic get away to Italy for a week or so, where we could relax, laugh, enjoy each others company We have want to go to Italy for years, but something always happens that prevents us from being able to go.. He has taken such good care of me. Even on my worst days he tells me how beautiful I am. He will do anything for me if it makes me happy (lucky for him, it doesn't take much to make me happy). He has stood by me and supported me through it all. The get away would be for him to relax and enjoy his life and quality time with his wife. I am truly blessed to have found a man that loves me and has stayed by my side, even after seeing the worst of the worth. Poor guy has had to give me B12 injections, help me cath myself, literally wipe my @$$. I would pamper him the way he has pampered me. I will snuggle up next to him because it will no longer hurt to be touched. I would make sure my husband and I had many more quality days of just the two of us.

Lastly, I would return to work in the NICU. I loved my job so much. I have missed it. Yes, it was a very intense, fast paced unit, because we got very sick babies, and I loved it all. Next month will be my 10 year anniversary. Oh how I miss taking care of the babies. I loved them all. When you work in the NICU, you take care of the family as well as their baby. I would get back to the swing of things and sing and dance my way around the unit, like I did before I got sick. I know that seems weird, but it is a huge stress reliever and it brings so many smiles and happiness to others, even the parents. I would be there taking care of the babes and supporting their parents.

Those are the three things that are high on my list. I am currently in the midst of grieving me. I feel like I have lost so much of myself because I am in pain all the time. I feel like I keep losing more and more independence. I want to dance, but I don't get to very often. I did dance tonight, one song, with Mallory to cheer up a friend that was having a hard day. Today was a pretty low pain, low fatigue day and I am so glad I was able to dance it out. When I am pain and symptom free, I will dance my heart out. I will not take a day for granted. For each day is a blessing, I never know what tomorrow will bring, so I take advantage of my ok days. No matter what, I never lose my smile or my sarcastic humor.