HelloWell my first son was born in aug of 86 and grew up to be healthy. I enjoy being a mom and working in the newborn nursery. My husband work off and on and then we talk about another child when anthony was around 18 months. We had made many trips to TN so Anthony knew the family on both sides. Mom made a trip down to the house with MIL and help with Anthony when I was pregnant. We never hardly thought about the NF (Neurofibromatosis) we just live one day at a time and always had money issues especially if Ralph was out of work. Joey gave me a hard time during preganancy and I was getting tumors on my body. I went to Texas once with a problem and came home safe. Joey was born early and no signs of NF. We lived in a two bedroom trailer and it was a little crowded but we was family. Ralph took care of the boys as much as me because I was doing swings the whole time I work the nursery and ob. After about three and and a half years after the Nursery I was moved to a clinic. Five days a week with weekends off. It was ob gyn clinic and during the time I spent at the nursery I took classes for EMT and it was interesting. Then I got move to a clinic. Well things didn't work out and I was move to ER because I had EMT training. I didn't like the ER it was 12 hour shifts. During this time we found out Joey had NF and been to doctors at 18 months he had a full body MRI because he walked crooked and he was late walking and late in other skill. Found out about the NF and they had more info for me. It causes tumors and learning disability and one doc said I would never get cancer. The doc did a biopsy and prove I really did have it. It was a mutation gene meaning that I got it from a mutation. Sort of like mutant ninja turtles. The DNA went hay wire. So now I carried it to my son. Other then some signs of NF and the learning disability he did fine. He laughed alot and was a sweet kid (coming from mom lol). Anthony took care of his little brother. When we try to potty train Anthony he just couldn't do it. Well the grandmas wanted to see anthony so we let him go to Tennesse for two weeks. He came back fully potty train. All we got out of it that he love his brother but he was jealous to. I work in the ER for a while and then I was sent to Primary Care Clinic. During the time I work there the housing office called to see if we wanted a house on base. We got help from mom with some money found someone to take our trailer to rent out to and we move on base to a nice three bedroom because of the ages of the boys.The boys did fine with the change but we had problems with Anthony when he started Kindergarten we was on base and the daycare was off. So we got permission to let him go to school off base and the bus pick him up and drop him off at the day care. During the time in the clinic when it started getting rough. I started having migraine headaches and I was out 2 or 3 days a week with headaches. Joey was going to dentist to get cavities fix. Ralph was trying to hold down a steady job. I had a mri done and they found a cyst in my head well here I go to texas again. The doctors there did more test and said it was a cyst on my sinus cavity close to my eye nerve. We was afraid it was a tumor and I would have to have surgery.So I got more signs and symtoms of the NF. Joey saw a genetic doc in tampa and just doing test for studies and research.Joey also went to pensacola to docs not counting the hospital I work at. During the first start of the Gulf War I had to go to texas to get the cyst checked. When I made it home I ended up back in the ER to work to cover for those that went to Germany to run a practice on taking wounded solidiers. So I never went over there to the war but I saw people that have been there. So throughout the time at the ER I still had some headaches and finally I got to go back to Priamary Care. The headaches were getting worse and missing alot of work. So in 1993 I started having heavy periods. My doc in the clinic I work at put me in the hospital. I was seeing a psycologist and was doing stress management.So during the time I was getting off all meds to restart more to help with headaches I found out I was anemic and almost had to have a blood transfusion then I finally got it up after staying in for a week and finally went home. I was schedule for a checkup with Ob because the docs put me on hormones well I got worse and ended up with a partial hysterectomy. The boys went to TN to stay while I recover after three weeks at home I was ready to pick up my boys. I stay in TN for a couple of weeks then I was ready to go home. After the hysterectomy the headaches got worse so I sign for a medical discharge and a doc in the clinic helped. I had one medical record full and started on a second.I waited several weeks and with luck working in the hospital I got 40% disability. But I was told that I could go to the VA for more.  Military and VA was totally to different departments. I came home to find a house to rent before we pack and came home. I found a house it wasnt the finest home but it work for a year. So this was in 1993 Dec when I go out. In 1994 I started school with VA paying for it. The VA pay for all the schooling and plus I got a check every month. So this help with Ralph in and out of work with construction. We lived in Vonore Joey was 5 and needed special ed preschool we they didn't have the class at vonore so I had to take him to Madisonville to school and pick him up. I did get pay by the school but not that much. He went the last part of the school year. We stay in this house for a year and I called the realtor who rent it out and told him that we was looking for house. Well he took it upon himself to find someone else to rent to. So we didn't find a house and we the lease was up we ended up at Ralp's parents with baby sister and hubby downstairs we was upstairs with the in laws. Well I stop for now probably got your ears full. Good night! 

Replies

deleted_user
deleted_user

wow hun your problems are far worse than mine and your just getting started telling them / we all have our problems big or small and some worse than others but we all support each other here . thank god for that. I feel for you haveing such a hard life and babys being sick isnt fun and migraines make everything hard to deal with. Im sorry I havent been on here checking my friends but I have different issues and get tired of telling them or complining so i rest a while to collect my thoughts . Im online a lot though and especially at night . If you need to talk to someone im a good listener I rather listen then talk lolim going to be praying for you and your family only god can help us through I firmly believe without god in my life id ave nothing and wouldnt survive so I put everything in gods hands and try to keep faith thats the hard part. you take care hun ILL be looking for your next post Love always Sandy hope I can be there for you
deleted_user
deleted_user

sounds like you have had a real hard time, and makes my problems look so tiny, but you have got through it, and here on ds i am sure there will always be someone here to talk to, just writing things down sometimes helps, you have had some scary times in your life, and if i can help in any way i will be here
deleted_user
deleted_user

Please know that I\'m reading your journals and want you to know I care. As you know, I\'m retired military so we sort of have a common bond. You have a friend here and if you ever need anything, just tell me.
Hope to hear from you more. I didn\'t have my ears full. lol
Hope you have a good day,
david
deleted_user
deleted_user

This must have been very hard to write down, but you did it. It\'s very cleansing, don\'t you think? And to know there are people out there that can relate and who care. I am one who cares and thank you for sharing your story. I am here for you. You sound like a survivor, very strong.
deleted_user
deleted_user

You have humbled me. I feel that my complaints now are just that.Take care of yourself. Talk soon.