General Update

I have been doing Ideal Protein since June 24, 2017.  My goal weight was 150 pounds or to be in a size 12 pants.  Two weeks ago,  I was able to buy 2 pairs of size 12 jeans.  They are actually a little bit big in the waist but I need the extra room in my hips and lower abdomen.  My weight was 158 though.  I thought about continuing with phase 1, but I was really sick of the Ideal Protein foods and I really wanted to expand my variety of foods.  I was planning on continuing a paleo/keto way of eating though. 
     On 1/14/19, I began phase 2 of the Ideal Protein plan.  The biggest difference between phase 1 and phase 2 is you go from eating 3 IP foods to 2 and you go from eating 8 oz lean protein to eating 16 oz lean protein.  I am having a hard time eating that much protein.  My protein still has to consist of meat and eggs.  No dairy products yet for protein.  I am trying to add little bits here and there to increase my protein amounts each day.  It doesn't help that I had to start antibiotics on Thursday for a UTI that cause me to have a bit of nausea.  In the past, we tried to avoid this particular antibiotic, but since I am allergic to most of the major antibiotic types, this is one of the few left to treat my UTI's, so I just do the best I can. 
     I am still losing a little bit of weight, but slower than on phase 1.  I will go to phase 3 on Thursday.  I get to add in dairy products and some fruit.  I am going to stick with berries and small oranges for now.  I will continue with 2 IP foods per day for 2 more weeks then I can go off them completely if I wish or eat them as I want to.  I will probably continue using the pancake mix since it is a nice low carb alternative.
     The other excitement in our life is that we are having to get a new van.  Last week, the ramp on my van broke AGAIN!!  I took it into the shop to be repaired and found out it was going to be very expensive to fix and they said there were other parts that would probably break down shortly after that.  The kneel already needed to be replaced, which puts extra strain on the ramp and that is expensive too.  I have some minor engine problems but pretty normal stuff for a 12 year old van with 120,000+ miles on it; oil leak, power steering leak, poor gas mileage.  My van doesn't like the cold.  It makes a lot of extra noise when it is cold and the van door works very slowly in the cold.  NOT a good thing when you have to sit and wait for the ramp to come out to get in the van.  We decided it wasn't worth it to fix the ramp and decided to replace the van.  They had a 2016 with less than 5000 miles on it that was 15,000 less than it would be brand new.  It is a Chrysler Town and Country.  I had really thought I would get a Honda when I replaced it, but they are so much more expensive and there weren't any available, especially in our price range.  This one is a top of the line with leather interior, power everything,  and lots of cool gadgets.  It is a tan color with a pearl finish so it will hide the dirt well since we have new subdivisions being built on either side of us so there is mud on the road all the time.  My white van is always dirty.  They had to order a transfer seat and a part to attach my hand controls since the one for the Dodge isn't compatible with the Chrysler.  They are going to install all of that on Friday and I get to take possession of it then.  I am very excited about getting a reliable van, plus having the added luxuries this one has, such as the automatic tailgate, the backup camera that isn't backwards, and a radio that will actually connect with my media player in my phone (my current radio will only connect to my phone but not the media player.  I have to manually connect the media player every time I get in the car, unless there are 2 phones in the car then it will connect the other persons, not mine-go figure).
     Lastly, I have an appointment with a neurologist in Dallas at UT Southwestern on February 20th.  She is a specialist in MS and autoimmune neurology.  Please pray that she can figure out why I have had those 3 episodes of ascending paralysis and that I don't have another one before I can go see her.  Also, pray that she believes there is a physical cause and doesn't blame it on psychological causes.  That happened to me early in my neurological history and I get nervous when doctors can't figure out a cause that they will start pulling out the psychological card just because they don't understand what is going on.

This is beginning to be a habit

I know it seems like I only post when I am in the hospital or when something is wrong, but that is about the only time  when my life slows down long enough for me to write.  I do want to find more time to write because I want to write my life store but I don't want to post that entire thing on my blog.  There are so many people wanting updates though that I thought I needed to start updating again.  I also have been writing out my weight loss story and I do plan on posting that.  I'm going to post that in sections because it is 6 pages long in Google Docs.

So, on Sunday, we had an amazing opportunity.  President Russell M. Nelson came to San Antonio to speak at the Alamodome.  We left the house at 2pm and  got there and into our seats by about 3:45.  He wasn't speaking until 6, so there was a lot of waiting around to do.  There was a lot of people there.  One of the speakers said there were over 23,500 people there.  Elder and  Sister Bednar spoke.  Sis. Bednar's talk was about 5 things she learned living in Texas.  They lived in Texas for a while before Elder Bednar became president of BYU-I.  Several of their grandchildren were born in Austin around the same time I was having my children. Bro Ochoa of the 70 and his wife spoke.  Then Sis. Nelson spoke about what life has been like since her husband's call to be prophet and the change she has seen in him.  The President Nelson spoke.  His talk was a lot about the gathering of Israel both here and in the afterlife. 

So while we were there, my central nervous system decided to go haywire again.  When the prophet came in, I could stand.  I listened to all the speakers and waited until the general authorities were escorted out of the Alamodome.  I went to stand up when the prophet was exiting the stage and my right leg was paralyzed.  Since it was only the 1 leg, we thought it was going to be a normal MS flare and not an episode of ascending paralysis.  Monday morning when I woke up, my left leg was also paralyzed.  Now we were facing something new.  I have never experienced the paralysis onset like this before.  We weren't sure if this was an MS flare with bilateral paralysis or the start of another episode of ascending paralysis.  I didn't have any weakness anywhere else.  Stan stayed at home for an hour to see if I was going to get any weakness but decided to head into work around 9am.  I emailed Dr. Westgate to find out if she  wanted me to go to the hospital or go in to see her.  She emailed me back around 11am with instructions to go to the hospital.  I had just decided that I needed to go there anyway because my arms and  torso had started to feel weaker.

We got to the ER and they took me back to the room right away.  The ER doctor came in pretty fast too.  He had already looked over my history and my records from my previous hospital admissions.  It was already decided that I was going to be admitted.  I just had to wait on the attending doctor to come see me and for a bed to be assigned.  It took about 3 hours before I got up to a room.  By that point, I could only shrug my shoulders a tiny bit.  We were really surprised that they admitted me to a regular room this time and not the ICU like the last 2 times.  I got to my room around 6pm, got my dinner ordered.  Stan had to feed me.  After the boys visited and went home, I tried to go to sleep, only to wake up about 15 minutes later choking on my secretions.  I couldn't swallow my own saliva and I was having trouble breathing.  The ICU manager came up to my room and stayed  with me until the doctor could come evaluate me and they could get me transferred to the ICU.  The ICU doctor saw me as soon as I got to the unit and decided I was didn't need to be intubated yet and they wanted to wait to see if I could turn things around with the 1st dose of IVIG since it was currently infusion.  They did some breathing tests frequently over the next several hours.  I stayed borderline until partway through the next day.  I was finally out of the woods breathing wise by early afternoon.  I still required oxygen though.  I wasn't allowed to eat or drink anything except for 1-2 ice chips per hour because I couldn't swallow without choking.  That lasted until the next afternoon when   I was allowed to start with soft food and slowly advance my diet.  I finished my IVIG on Thanksgiving early in the am (like 4am.)  By the time the doctors rolled around at 9ish, I was able to lift my arms off the bed a little bit, move my hands, move my torso some and wiggle my toes just a tiny bit.

I've been out of the ICU for 3 days now.  I can raise my hands over my head well enough that I can braid my hair.  I can lift my torso off the bed.  I can turn myself with help.  I still have very little movement below my waist except that tiny twitches I have in my feet and my upper body is very weak.  I can't open my milk cartons, or some of the bottles, like soda bottles, but I am getting stronger every day.

The plan is for me to be transferred to the rehab hospital as soon as insurance approved the referral.  I'm going to call on Monday and find out when they estimate an answer.  I know I only have 60 days of inpatient rehab per year and I have used about 34 maybe, so I still have 26 days, almost 4 weeks worth.  I shouldn't need more than 2, maybe 3 weeks.  I usually bounce back really fast from these once I start going through PT/OT, especially

When the neurologist saw me in the ICU (not my normal one, but the one who saw me the last time I was here), he did make a few recommendations for me.  He thinks I should go see a neurologist at one of the teaching hospitals in Houston or Dallas once I am able to travel.  Dr. Westgate, my regular neurologist, has mentioned this once already to me, so she has been thinking this way too.  She hesitated though because the one I saw in Houston prior to seeing her said that my symptoms were being caused by stress.  I have no doubt that stress makes my symptoms worse, but they are by no means the sole cause of them.                                                                                                                                             

I almost forgot

I almost forgot to post about my weight loss milestone this past week.  I have hit the 70 pound lost mark.  Actually, I am down 72 pounds.  I have about 25 pounds to go.  Here is a photo of me at 247 pounds.  I took it the day I started Ideal Protein.  My "BEFORE" picture.

Here is a picture I took the other day at Target when I tried on this dress. I wasn't sure of  how it looked on my, especially the stripes, so I sent Stan a picture for his opinion.  It is a size medium.  The clothes I am wearing in the above photo are a size 2XL top and a size 22 jeans.  I kept this entire outfit so when I am done, I can put it on and everyone can see how I will drown in it.  I am currently wearing a medium in most things, especially tops and loose fitting dresses or full skirts, and large in some things , like pants, especially if  they have a zipper.  Birthing 3 babies gave me big hips and a genetics gave me a big butt.  If it is a number size for pants, I need a 14.  I am aiming for a size 10 or 12.  I think losing 25 more pounds will  easily do that, especially since some of my 14s are starting to get a little bit bigger in the waist.  It's just the butt and the legs that are still more fitted.

The stripes going in 2 different direction give this dress a strange look at my waist.  You can see my baby fat in the photo around my lower abdomen (from having babies, not being a baby) but you can see it because I am wearing my swim suit and it actually made that  part of my body stand out rather than acting like a girdle like I though it would.  It is much more flattering without the swimsuit under it.  You can also tell a lot in my blog photo.  My face looks so thin compared to my before photo.  After I  get out of the hospital, I want to take some better current photos.  I'm not going to  take the photos with my old fat clothes util I  have lost all the weight I  want to.  Also, Rachael and I can wear the same size tops, but not the same size pants.  I have a bigger butt than she does.  She has bigger boobs than I do though.

With the swallowing problems I have had this weekend, I have had more sugar in the last 5 days than I have eating in the last 5 months.  I have eaten about 10 containers of pudding since I've been in the hospital.  I got a bunch of Ideal Protein pudding and had Andrew pick it up today so I won't be having all that sugar so much.  I have to take my medication mixed in pudding or apple sauce, both have lots of sugar and I have to  eat a lot of soft foods, so i am getting a lot of puddings and yogurts with my meals.

I am finally ready to fall asleep I think.  I  have been up most of the night with pain in my legs and just general can't  sleep because I am in the hospital.

My Follow-Up with my Neurologist

I want to make sure I keep up with my blog and not neglect it just because I am out of the hospital.  There is still going to be a lot of things going on with my health and my life that I want to journal about.  Maybe people want to read about my life and  maybe not.  Maybe someone will read about my neurological problems and have some clue as to what is happening to me and help me find answers. 

Yesterday I went to my neurologist office and had a nerve conduction study done.  To my surprise, it came back normal.  After my ascending paralysis, I expected it to be abnormal and so did she.  If it had been Guillan-barre or CIDP, the nerves would not have been able to  respond but they responded normally.  The only nerve that didn't was the nerve that  came from my central nervous system down to my feet and back.  They couldn't get any response from that at all.  So I do not have CIDP like the hospital neurologist thought.  My neuro went through the numerous abnormal labs that I had.  Many of them pointed to generic autoimmunity, which we knew I already had.  One of the antibodies can indicate an autoimmune disease called LEMS which I don't have the  symptoms for, but over half of the people with this have small cell lung cancer.  Because of this, I have to have a CT scan of my chest, just to make sure we are not missing anything.  I have no risk factors for small cell lung cancer my doctor doesn't want to take any chances. 

I walked away from the  doctors office rather disappointed.  I think Dr. Westgate was disappointed too that she couldn't figure out what was wrong.  She is sticking with the diagnosis of MS because that fits the best although she admits that I don't really have MS, but some other autoimmune disease that effects the central nervous system.   It can act like MS at times but then also have these episodes of flaccid paralysis (I've had 2 of these) and ascending paralysis, which is the scariest symptom of all.  My doctor can't tell  me if the flaccid paralysis or the ascending paralysis will happen again or not. Over the past week, I have been praying that we will be able to find an answer to what was happening with my body.  Over 10 years ago we went through this limbo process before I found Dr. Westgate.  Then, I had several doctors tell me that my illness was psychological.  No one is telling my that now, but I think that period of time seriously planted some deep fears in me.  I'm so afraid someone is going to tell  me that  my illness is in my head like  they did 10 years ago.  It's obvious it isn't since I don't have reflexes and I  was paralyzed but it has now become a phobia.  I have been praying and reading my scriptures and trying to figure out why I am having to go through this kind of trial.  It's bad enough to have  to go though the trial of the physical illness.  The emotional strain of not having a real diagnosis makes it even worse. Thank goodness all the autoimmune diseases can be treated with IVIG so we will continue my IVIG every 4 weeks.

On a more positive note, I had my 1st weigh in since getting out of the hospital.  I lost 2 pounds since my last weigh in, which was prior to going into the hospital.  It was hard to stay on program in  the hospital.  The menu there was very high in carbs and it  was very difficult to get extra vegetables.  The craziest thing was when I would order my meals, they were always surprised when I didn't want dessert.  You would think hospitals would be an easy place to get healthy food, but really the health care profession doesn't know much about real nutrition past the governments food chart, which is not very healthy.