I haven't fallen off the edge of the eath

Just in case you were wondering, I am still around.  Life has just gotten busy.  I think I need to put "write on blog" on my calendar because then it will get done.  PT and doctors appointments have become my full time job since my last big hospitalization.  During my last episode of paralysis, it turns out my bowel was damaged, so I have pelvic physical therapy once a week, pool therapy once a week and regular PT once a week.  I go for my weigh-in at Ideal Protein once a week and usually see the chiropractor while I am there.  I almost always have at least 1 doctors appointment each week.  The week of Halloween, I have 3.  Having a chronic illness is a full time job.  I have to factor in a lot of drive time too since we moved out to Del Valle.  All of my doctors are at least 25-30 minutes away and a few are 40 minutes away.  I would really love to have a more energy efficient vehicle.  Handicap vans are not the most energy efficient things.  They are always big and the equipment weighs a lot.  I really didn't think I would still be driving a van when  I didn't need it to chauffeur kids around.  I would love to be able to drive a smaller car.  I am so grateful to have this van though and that we were able to inherit it from Stan's mom when she passed away.  These handicap vans cost double the  cost of a regular van.

Last week I  had my 4th hospitalization for the year.  I have broken 2 personal hospitalization records this year.  Not somethings I was trying to do.  First, longest hospitalization - 5 weeks.  Second, most hospitalizations in 1 year -4.  My previous record was 3 and all 3 of those were fairly short, like 2-3 days.  This year I have spent over 8 weeks in the hospital.  Now I bet you want to know why I was in the hospital.  It was actually planned.  I had to have my baclofen pump replaced.  The battery was almost dead so we wanted it done while my deductible and  out of pocket max were still met.

This surgery was much easier than the initial placement.  Only had to be in the hospital over night.  I was in the hospital then in rehab for 2 weeks last time.  The worst part of the recovery has been  unrelated to the surgery.  I have a condition called autonomic dysreflexia.  It developed after my 2nd paralysis episode.  This means the autonomic nervous system doesn't regulate itself the way it should.  The autonomic nervous system controls all of the nerves that are involuntary like in your heart, blood vessels, lungs, sweat glans, hair follicles and many other areas.  This disorder is common after spinal cord injuries and can happen in things like Guillan Barre or multiple sclerosis.  My paralysis episodes are very much like Guillan Barre, they just don't fit the diagnostic criteria because of some of my test results.  So, after we got home from the hospital, my skin started feeling like I was sunburned everywhere.  I have had this a few times but not  really since I started IVIG.  This is the one symptom I have a hard time dealing with.  I can never get comfortable.  The breeze from the ceiling fan makes my skin burn.  There were some strange things with it though.  I was getting goosebumps everywhere off and on.  There was a lot of pain associated with the  goosebumps.  They are the worst on my legs.  Also my legs feel like I haven't shaved in several days despite the fact that I have shaved twice since my surgery.  It's like the goosebumps are pushing the hair follicles out more.  If  anything rubs on those stubbly areas, it hurts even more.

I have found nothing that gives me any lasting relief.  Stan gave me a blessing and commanded the nerves to begin healing and the pain to ease.  I have pleaded with God to take away the pain multiple times and asked him what I needed to do to get rid of the pain.  I've broke down into tears a couple of times a day.  Early Saturday morning I really broke down but decided I needed to approach this a bit differently.  I prayed to god and told him I was going to turn this over to him.  I asked him to help me have faith in the blessing Stan gave me.  Then I asked him to inspire me that  I would know things that would prevent the  pain from getting worse.  I immediately received some very clear instructions.  These instructions not only kept my pain from getting worse, but I actually experience some improvement.  Sleeping has been difficult for me, but I have been able to sleep on my side better than I usually can.  The really strange thing is that I wake up hot but it I remove the covers, or even just the top blanket,  then I get goosebumps and I am in more pain.  I am really hoping my AD was just triggered by the surgery and the pain.  I really don't think I could deal with this on a daily basis.

Spring Break

I am still trying to recover from spring break last week.  We had so much fun.  Monday was spent just running errands.  Tuesday, we went to the zoo in San  Antonio.  I think the entire city of San Antonio was there.  It was a mad house.  I thought we were going to have to park a  long ways away, but I lucked out and there was a special parking area for handicapped.  I guess MS has a few advantages (they aren't usually worth the disadvantages though).  At least when the zoo is busy you don't  have to stand in long lines to get on rides.   We were able to see all the animals we wanted to for the most part.  They have this new indoor area for the African section of the zoo.  The hippos are outside, but there is a big window so you can see them under water.  We couldn't get around to some of the windows to see some of the smaller African animals.  The big ones were outside though and they were the ones the kids wanted to see.  We took  lots of pictures of the snakes since Andrew and Jessica (my niece) are obsessed with snakes.  They both own Ball Pythons.  My favorite part of the zoo was the big cats, especially the tigers.  I was able to get a good photo of the sleeping tiger thanks to my 300mm lens.  The weather that day was wonderful.  It was a little cool and overcast at the beginning of the day, but it ended up really nice but not too hot.  After the zoo, we went to the temple to exchange Jeremy's scriptures.  We have had them for 4 months and a page came out.  Then we stopped at IHOP and they came home.  We were all pretty tired, but it was great fun. It would have been much better though if Stan could have gone with us.  There were already several people off at work so he couldn't get any time off during spring break.  Usually, since we homeschool, spring break doesn't matter much, but with Rachael taking classes at ACC, she has class every day except Friday and Jeremy has OT on Friday.

Wednesday we all slept in, then I did some sewing while the boys just watched TV.  Rachael took a master class from the modern teacher at Tapestry during  spring break, so she went to dance.  After I got some sewing done (I was hired to make some curtains and they were the BIGGEST pain in the world), then I took the boys bowling.  I watched them bowl.  I used to love to bowl, but since I have chronic back pain, I just can't handle bowling any more.  I tried with the cub scouts 2 years ago and I had to have one of the other moms take over for me after only 3 frames.  Anyway, Andrew got a gutter ball his first roll, so he asked to have the bumpers up.  He decided in the second game that he should probably man up and bowl like an adult.  Needless to say, Andrew won the first game and Jeremy won the second.  That's ok, because we had fun.  The kids had mutual on Wednesday evening, so I worked on the curtains some more.

Thursday was quiet around the house.  Andrew spent the night with Ryan and Rachael was at dance, so it was just Jeremy and I.  In the afternoon, we went to see Rachael dance showing off what she learned in her master class.  It was pretty cool, but kinda strange compared to what she usually does.  She loved the class though.  She hasn't been able to take the modern class because she teaches a little kids class during the modern class.  This teacher is doing her senior solo though, so she does get to learn from her and she loves her technique and her style.


Friday we had OT and spent the rest of the day cleaning so we could have Jeremy's birthday party on Saturday.  His birthday was actually in January, but he wanted to have a party that needed to be outdoors, so we had it in March.  We had a Nerf war in the back yard.  It was so much fun and it was so easy.  I put out a few snacks and we had lots of ammo and Nerf guns and it was a total free for all.  They played Nerf war for about 2 hours and then the Hess's stayed and played for a long time after.  I highly recommend this party for any little boys

Now life is back to normal.  The curtains are done, school is back in session and things are calm.  I have to say that I will never do curtains like that again and I now see why people charge so much for custom curtains.  These were curtains for an area that was 8 ft tall and 10 ft wide.  They fabric was very thick and heavy too.  I don't have a single flat area in my entire house, including floor space, to measure and cut curtains that big.  I am actually really surprised they turned out really well.  They are all even and they hang just the way they are suppose to.  Now I can get back to the things I like to make; bags and quilts.  I'm working on a new quilt right now.  I have no idea what I am going to do with this one.  I'm doing a 9 patch and I'm doing it only because I am teaching how to do this kind of quilt at our quilting club at church.  I took the easy way though though and I bought a jelly roll and a charm pack to make the squares of this quilt. I might sell it in my Etsy store, if I can get anything to sell.  I"ve been open 3 weeks and nothing so far.  I need to do something to get the word out and to get people to look at my store.  When I put things in the store, they are buried pages and pages back within 24 hours, so my bags are not the first things to come up when people look at bags.  I'll take any suggestions on getting my name out there if anyone has any.

Everyone have a great week.

My next set of bags

I just uploaded a few more bags to my Etsy store.  In addition to bags, I now have a few water bottle holders.  I love these water bottle holders.  It makes it so convenient to always have water with me.  They are especially nice when you are hiking or taking long walks.  I also plan on using mine when we go to Six Flags this summer and during girls camp.  Here are a few pictures of what I put in the store this weekend.  You can find the links to my store on the side bar.

In addition to making bags and water bottle holders, I have been busy with lots of other sewing projects.  I never thought I would do this much sewing in my life.  To think, I used to hate to sew.  It just goes to show you that you have to find the right thing.  I still wouldn't make a dress, but I've made Jeremy some shorts with matching do-rags.  For some reason, he is obsessed with these do-rags lately.  He has 3 pairs of shorts that have a matching do-rag.  I also made another quilt that has a roller derby theme.  I used the same fabrics I did for my nieces quilt, but used a different pattern so they are both unique.  Then lastly, I've made LOTS of curtains for Jeremy's occupational therapist.  I made 4 sets of curtains for her windows and I'm about to start on a large set of curtains that are going to be used as a partition in her small cabin that she shares with her daughter.  It will basically serve as a wall to give her daughter some privacy.

I've also been  having some fun playing around with Emily's sewing machine.  She let me borrow the embroidery/sewing machine she inherited when my mother-in-law (her mother) passed away.  It is so nice.  The entire thing is computerized.  It sews, has lots of decorative stitches, self threads plus does lots of different embroidery designs.  It has a bunch pre-loaded, but then you can hook it directly up to your computer and load lots of other patterns into it.  There are so many free patterns all over the web.  I've downloaded a bunch but haven't moved them over to the machine yet.  I haven't even had a chance to embroider with it yet.  I have to finish up these partition curtains this week, then I will have time to play with the embroidery machine.

This may be old news as I can't remember  if I posted this the last time, but I had to switch my MS medication.  I was on weekly shots of Avonex, but I have had 3 flares in the past 7 months so it doesn't appear to be working any more.  Now I am on Copaxone.  There are some pros and cons to this.  It doesn't have the really bad side effects that the Avonex does, but the shots are every day.  The only side effects I've found with these shots is that I get this intense stinging and redness at the injections  site starting 2 minutes after the injection.  I've been told it gets better and I hope it does.  I have to hold an ice pack on the site for about 30 minutes after the injection.  I really hope this works and I don't have any more flares.

This week starts spring break.  I'm planning on having a lot of fun with the kids this week.  We are going to the zoo in San Antonio on Tuesday.  The other days, we are just doing lots of fun things around town.  We are also going to be cleaning the house this week.  Jeremy is finally going to get to have his birthday party on Saturday.  His birthday was 2 1/2 months ago, but since he wanted to have a Nerf war in the back yard, I didn't think January would be a good month to have that kind of party.  A lot of the people we invited can't come because of spring break, but enough people are going to be there that it should be fun.  I feel sorry for any girls that show up though.  This is totally a boy party.

I hope everyone has a great week.  Please send prayers my way giving me enough energy to keep up with my kids this week.

Pictures from Spring Break

Spring Break

We had a marvelous time during spring break this year. We didn't go anywhere like we did last year, but we still had fun. I took lots of pictures, but I am going to have to upload those onto the blog later. For some reason, my computer isn't showing me any pictures. I've tried to upload 2 on here and they just aren't showing up. I don't know what is wrong. It could be Mozilla, or Blogger. I don't know. I'll tell you about spring break and you can see the pictures later.

The first day was kinda boring. We had some errands to run, so we did that. Andrew mowed the lawn and I worked with Rachael on learning to drive a standard. It wasn't very successful. She stalled a lot and was kinda freaked out.

On Tuesday, it rained all day. We stayed inside and watched movies and just hung out. The rain slowed down in the afternoon so I took Rachael to drive more. She did a lot better this second day. Unfortunately, we didn't get any more practice in that week, so she still needs to work on it more. Part of why we didn't get to practice is because we discovered her license was expired. It had expired back in October. I thought they were good for a year from the time you get it, but it was only 6 months. OOPS!!! She has been driving with an expired license for 5 months. Stan was able to take her in and get it renewed on Thursday, so that is taken care of now. It is good until her 18th birthday, then it will be good for a few years.

By Wednesday, the rain was gone and the sun was shining. It was beautiful. We went to Zilker Botanical Gardens. We spent about 3 hours just walking around. I look just over 100 pictures. Some of them turned out sooooo good. I can't wait to post them on here once my computer lets me. The Hess's went with us. It was a lot of fun and everything was so pretty. It will be even better in a few weeks when all the flowers are actually blooming. Everything was green, but there wasn't very many flowers out.

On Thursday, we went to the Nature Center. They have a bunch of animals there, like a mini zoo. Most of the animals were wild animals that had been kept as pets, or injured animals. They can no longer live in the wild either because of their injuries or their lack of ability to take care of themselves because of living with people. We got some good hiking in. There is a little stream that connects 2 small ponds at the nature center. The kids all took their shoes off and went wading through the water. Andrew and Jeremy ended up being soaking wet. Rachael also managed to lock her keys in the car there. It's a good thing we got a copy of her key for me or her dad would have had to come down to open the car. Andy and Rachael then went to help Ammon with his Eagle project. They had to work really hard cleaning up a bunch of tires that were buried under a play area. They fixed some benches too. They came home exhausted.

On Friday, we went roller skating. There is a new roller rink open in Manchaca. I hadn't been roller skating in years. I was surprised how much my legs hurt while I was skating. We skated for about a hour. It was good exercise. I didn't take any photos of skating because the rink was pretty dark. I didn't think they would turn out between the lack of light and the movement of the subjects. Jeremy didn't quite get the hang of skating though. He couldn't seem to move his feet properly. Andrew didn't want to go at first, but he was the one that didn't want to leave. He is also the one that has asked many times when we are going back. Jeremy has to skate for 3 hours before he can get his roller skating belt loop anyway. This means we will probably go at least 2 more times over the next few months. After we got done skating, we went to this little frozen custard place called Licketty's. It was yummy. The Davis's were suppose to meet us at the rink, but they got held up at the allergist office, so we went over there to hang out for a little while.

Saturday turned out to be very cold and wet. We had planned to go out shooting at Cannaday's ranch Saturday morning. We decided not to wimp out, but I wish we would have. It was really windy and the temperature was only 36 degrees. The low for the day was suppose to be 45. Boy were they wrong. It was so hard to believe it was so nice the entire week then it was like the middle of winter again. I shot Stan's new .22 hand gun about 8 times then I went back to the car to warm up. Jeremy came with us, but he never shot any of the guns. It was just too cold for his skinny little body. He stayed in the car the entire time. Now, we need to go out again when the weather is nice so we can do some real shooting and not be rushed to avoid freezing.

I'll try to post pictures tomorrow and hope it works. I also need to download my camera and post about the mini vacation Stan and I took in Wimberly at a bed and breakfast. Stay tuned!