Well on New Years Eve my step fathers brother lost his battle with cancer. Then on Tuesday morning of this week my mom's brothers wife died! On 1-13-11 their daughter is having brain surgery for a tumor that maybe cancer. Today my youngest daughter was scheduled for a spinal tap. Of course after waiting 2 weeks for an appointment she barely has a headache! So to try and bring it on worse she ran around and jumped for 20 minutes. It did not seem to help. They took her in for the procedure and went to the waiting area. I knew if her pressure was in what they considered normal (15-20) even if it was at the top they would do nothing to help her. So I prayed and asked God that if she truly had Psuedotumor still and needed a shunt that I needed him to take control. I asked that if it was needed that her pressure needed to show at least 21 or more and it was 21! So He answered my prayers. I do not want her to have a shunt but if that's what she needs I needed it to be no problems. Also the neurosurgeon says that when they are sedated that it brings the pressure down by 10 points so its possible that her my pressure was closer to 31. I am so tired and I just want to go to bed. Makenzie went to bed as soon as we got home, got up to eat chili and then went back to bed. She is not doing well at all.
I am a single mom of 3 children Chase, 19, Makenzie, 15 and Breanna, 10. Makenzie has Tetrology of Fallot, Arnold Chiari Malformation, Tethered Cord Syndrome, Ehlers Danlos Syndrome and Psuedotumor Cerebri recently. Breanna has Chiari and Tethered Cord and Psuedotumor. I also have Chiari, Tethered Cord and Fibromyalsia. This is our story and how we live life with this nightmare and try to make the best of it.
I am a mother of 3 children with 2 of them living with Chiari along with myself.
I have 3 wonderful children (well sometimes lol) that I have been honored to be the mother of. My oldest son is named Chase and is 19 and I am so grateful a very healthy young man. My middle child is Makenzie who is 15 and has been suffering with many health issues since she was a baby. Breanna is the baby and is a spoiled 10 year old. She also has suffered with many issues since she was a baby. I also have this horrible birth defect called Arnold Chiari Malformation. I pray for a cure or a fix to this.
Thursday, January 6, 2011
Saturday, January 1, 2011
Makenzie is finally home!
I am so happy my big little girl is home today. Brea and I went and picked her up around 12:30 and she took us to lunch at Chili's. She is always so VERY generous with money when she has it because she knows I can't afford to take us. After eating we went to the house to print a coupon for Aeropostle. She had gift cards and money burning a whole in her pocket. lol I made her wait till she got home to go shopping. So we headed to the mall. She found 5 shirts at Aeropostle after an hour of looking and getting discouraged about her weight gain. What she doesn't realize is she looks so much better than as thin as she was. By the time we left the store I was so miserably in pain but I didn't want to spoil the fun. So I sucked it up and kept on going. The last stop was Claire's where the back pain got to the worst possible. I was talking to the assistant manager when stepped towards the counter and I felt a pop and I couldn't move for a few seconds. It felt the same way when I herniated the disc on the right side and this was the left! It has continued to bother me off and on all night. That's all I need is to have something else hurting constantly. Makenzie's had a terrible headache this evening and had to take something before we went out to light the remainder of the left over fireworks. We had a good time but I am DONE for the day and maybe the next! I can't do this but I also want to be somewhat of a mom to my kids. They already miss out on so much because of my health issues and theirs but mainly mine. it really sucks when they want to just go to the park and I feel to bad to go most days. When I do go I usually don't enjoy myself because I can not run and play like I used to with them. I miss those days and it feels like the pain keeps getting worse not better! . Just because I do things that you do not think I can do doesn't mean anything. You do not know how I feel and honestly I hope you never do because I would not wish this on my worst enemy. One of the things I hate the most is "well you look fine". Well does a person undiagnosed with cancer look sick? No but that doesn't mean they do not have cancer does it? So the next time you start to tell someone that stop and think about it because to us it seems like you are saying we are wrong that because we do not look sick we are not. While I am venting I get so sick of people assuming since I have a good day or push through the pain to do something with the kids that I am automatically betterEveryday doesn't seem much different but by the time I go to the next week and I stop and think wow this really has been more than last week, I find myself saying this more and more than ever before. Will I ever get help? I would be happy with more relief than what I have now. This started as how happy I was for Kenz to be home to me complaining. I am so happy she is home so very very very happy. I love my kids so much and I wish I could take their pain away! Hope everyone had a great New Year and continues to have happy and healthy days throughout this year of 2011!
New Years Eve
I am exhausted and ready for this year to be over. I truely hope this year to come will be much better than the current. Today has been a scary and fun day. About 2 months ago I woke up to me finding a very small lump in my right breast. Now I know what you are thinking but I don't play with my breasts. I can not explain it other than I woke up this way maybe because we had recently talked about the fact that my mother and grandmother had it and I have the gene. So yes I was a little freaked out when I first found out and still get a little stressed over it. When I found this very small lump I didn't think any more about it because I couldn't find it the next day. But then last night I woke up again with my hand in the same spot and the lump was there and much bigger! So now I am truly freaked out because it is New Years Eve and no one is in the office till Monday! So I get to go all weekend worrying about this. It may be nothing but if it is I honestly believe God had something to do with me finding it and I believe it will be caught early through His help.
Brea has been sick and she was feeling better but still not great! She still has way to much energy for me tonight and attitude. I wish I could say her headaches were better but that's not the case at all. We have had a good day though. We went to 2 Walmarts and a Publix trying to get fireworks that I would not be afraid to light. lol After we got home we went outside and some of the neighbors kids joined us and we used most of what we got with all of them. At midnight I got a kiss from a beautiful 10 year old and she wanted to dance with me. A great ending to a not so great year. Hoping this year has better and healthier things to come.....
Brea has been sick and she was feeling better but still not great! She still has way to much energy for me tonight and attitude. I wish I could say her headaches were better but that's not the case at all. We have had a good day though. We went to 2 Walmarts and a Publix trying to get fireworks that I would not be afraid to light. lol After we got home we went outside and some of the neighbors kids joined us and we used most of what we got with all of them. At midnight I got a kiss from a beautiful 10 year old and she wanted to dance with me. A great ending to a not so great year. Hoping this year has better and healthier things to come.....
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