I think it’s the cold talking?

Maybe I am going a bit crazy or the fact that I am sick and I am tired of being sick. I already have chronic pain and then to have this three week “cold” on top of it has pushed me over the edge. My Dr. today tested me for whooping cough of all things. I just about died… Of course I am allergic to the DPT vaccine so when he tells me it looks like and sounds like I have it and need to be tested for it I scrunch into a ball and say NOOOOOOOOO!

Next came the horrible test where he tries to stick 6 inch Q-tips down my nose. I have to laugh at this because he tried and I swatted his hand away. So we tried again with this time getting in only a little further. He looked at me like I was a bit crazy and said we needed to do a bit better. So we tried again. Well, after about a half dozen times trying we were done. With one side!

I don’t understand what was wrong with me today? I have been poked and prodded for years because of my brain disorder but today the thought of something going up my nose was not going to happen. I should have been stronger and told my brain that I needed to do what ever I had to, to stop coughing. To stop being sick…

 

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Tuesday just needs to come

So many unanswered questions will be answered by Tuesday. I already know that one occupation will be gone from our home, one less income, one less way to support ourselves but the question is how will it all go down? Will the others involved let us walk away or will it be a mean bloody fight? I have multiple Doctor appointments with the possibility of going back into the hospital for a few days. My thought is will I do it and for how long this time? Last time was a week. Is it even worth it to do the infusions? We are starting to make a list of things, and I do say “things” that we can sell. Because anything we own is really not that important to me as long as my family is still together and fed, warm and in a home. I say “A” home because we have our house on the market we need to decide whether we want to stay and take it off the market and keep it as our home or drop the price and dump it so we can move. Get away from all of this shit, all the problems and all the people around us. Im not naive. I know that anywhere you go there will be people that mess with your life or problems you can’t fix or hardships but right now I just want to run. Run as fast as I can…

the end of 2014

By the end of the year my Dear Grandmother Laura passed. She was old in years and it was expected a women of her age and well lets just say an amazing life to have to die at some point. But you never really grasp it at the time. She was our matriarch. The one who held the family together. The strong Norwegian tall, with size 13 mens shoes. When you came into her home you were family. You were always given a hot meal, a sweet treat and a warm bed if needed. My whole life I looked up to this women. This strong women. So truth be told, watching her failing health the last few years of her life was hard. When we would visit and she would say that she was ready to go home to her heavenly father. To see may Grandfather, my father who had passed on before her I could understand. It must be hard going from a strong independent women to a frail, helpless women depending on others.

She had what the Drs thought to be a stroke. But with no test we will never know? I don’t believe them. She laid there in her bed for a week no water, no food. I brought my son the first day and she was non responsive. he was so upset. crying, telling me that he wished one more time to hear her tell the story how she was Grand Marshall in the parade and they road together in the convertible. It was their story! I told him to tell her the story. He did. As he told her the story she opened her eyes, as he got to the part where she taught him how to wave she lifted her arm and started to wave at him… We all jumped up and started screaming. Oh Tommy Boy! (that is what my Grandmother always referred to my son as. It took Tommy Boy to get Grandma to wake up!! That day and part of the next she was with us. She couldn’t speak, she communicated with her eyes and she moved her hands a little. I took my son home and came back with my daughter and we ended up staying the entire week. taking care of her almost up until the end. Swabbing her mouth, rubbing her head, hands, telling her we loved her, making she she was comfortable. Making the plans for after…

She died on Halloween.

Week from Hell… No Just another week on earth

Every day I feel like I have someone sitting on my chest

I cant breath… 

Everything going on in our life is a mess

How can I fix it, how can I make it right? 

I am so tired of Doctor appointments

I am so tired of lawyers

I am so tired of losing my friend and not understanding why

I hate that I wake up everyday in pain just to live through the day to wake up the next day in pain

I want a plan… 

Can I have a do over? Is it to late

Wake up tomorrow and just change my life. Change the way I live, the way I act, the things I do, become a whole different person? Maybe if I dislike the way things are going now I need to reset my life. My husbands life, my kids life. 

now its crazy meds talking… I just know I cant live the rest of my life like this. I have to change something, anything. HELP!!! 

My Sally

People come into our life at the time we need them the most 

Stop looking, shut your eyes, it will happen

It might even be someone you wouldn’t expect

I just lost one of my very best friends and with her she tried to ruin my marriage. Along with that I was feeling alone, sick, in pain, and very confused.

Out of nowhere I get an email from Sally… My elderly neighbor. She had heard that I was having some health problems and offered to watch my daughter and help out anytime I needed her. She had Migraines when she was my age. Knew how hard it was to raise children while she was in so much pain.

Weeks have gone by and I have thought about Sally. I have a Dr. appointment today for my third round of Botox, yesterday I spent the entire day in the ER and I feel like crud. I called Sally. She was so loving, so caring and wanted to know how she could help. She would love to watch Issa for me and she already has crafts planned. Suggested different meds that her and her daughter had used in the past. The entire talk was so uplifting. 

I decided everyone with chronic pain needs their own Sally. Find someone in your life that knows what you are going through. That can talk to you and truly know how it feels! Only someone who has gone through it, experienced it can truly understand. 

Thats my Sally 

Spinal Taps Anyone?!?!

 Its been about a year now since one of the worst days of my life. I can tell you I have been through some crazy shit in my life! Not to mention Daily Pain!! But… when my neurologist and I start twiddling our thumbs and come up with something else that just might work, just might be the answer. I say “Lets do it, It cant be worse then what I am already dealing with every day of my life!” So that is where the spinal tap comes in. We thought it would be good to see what level my spinal fluid was at in my brain. I thought, why not! I’ve had to babies and both times had an epidural. Same thing, right? Wrong! 

I go to the Hospital, Lay down, a big TV screen so I can watch. (more for him, but it was in my face) He warns me that the lidocaine  he is going to use on my back doesn’t have a buffer because they ran out and could only use the good stuff on children so suck it up. When I asked if people could get put under anesthesia? He said thats absurd! He was almost upset sounding when I asked. 

My mom had to wait behind the glass. the nurse held my hand. I laid very still. Tears streaming down my face. Trying not to scream out in pain. The needles start going in one after another. Then he starts the spinal tap. I can feel it but I am not going to say anything. Tears still running down my face… 

After he is done I get the instructions from the nurse. My mom drives me home. The look on her face. Kills me to this day. I get home and it hits me… The spinal headache. Of course, I am going to get the spinal headache! I start taking meds. Nothing works. So now my spine hurts, I am vomiting and the worse headache ever!! I call the Dr and he tells me to try and make it through the night. My mom gives me some pain meds, sleeping pills. I take everything.. She wouldn’t leave the rest knowing I would over dose. Guess what, I would have! 

The next day I tried all day, I waited and waited and it wouldn’t go away. So I called my mom and she brought me back to the hospital. Now the Dr was really pissed. He was going to miss his Daughters recital because of me. Well maybe he should have done it right the first time? Now he gives me a blood patch.. So gross! They take blood from my arm and inject it in my spine below the hole in my back that is leaking fluid. A blood patch.

Guess if it worked… Nope! It actually caused extreme lower back pain and I was on bed rest for a WEEK! Plus the spinal headache was still going on. 

The first and only time in my life that I prayed to just die! For an entire week! When I am in pain I will pray to get better or focus on something else but the pain was so bad. So intense and nothing they could do. I just wanted to die. I couldn’t even think about my children, my husband, my family. All I could think about was Please end this pain. 

Every time since when My neurologist and I sit down and start coming up with “the next great plan” We leave out spinal tap! 

*BTW My levels were three times higher then normal but not high enough to where he thought I needed surgery at the time. Thankful for that