A New Year and more progress...

As the New Year begins, I have much to be grateful for.  I have very generous family members and friends who have made donations to help support us during this tough time.  Friends from home are sending frequent reiki treatments and positive vibes to help heal my mind, body and spirit.  Prayers are being said to ask God and his angels to help me deal with my disease mentally, emotionally, and physically and I also have incredible health care practitioners who have helped push me to get stronger every day.  All of these things combined have helped me make the quickest recovery that my healthcare practitioners have ever seen from a patient with GBS after only two months of treatment.  They have said that most people at my stage are at 6 or more months of recovering.

After discovering a problem with the nerves in my hip and butt area and starting treatment on it Christmas week, I can now lift both of my legs into the air from my hips off of the bed.  I can also bend both knees and pull them towards my upper body.  My upper body strength is almost back to normal, my core and lower back muscles are much stronger, and I’m gaining more flexibility every day throughout my whole body (although I still can’t touch my toes or come close to it – someday I will have my flexible yoga body back).  Lifting my hips is still a bit challenging, but I am working on it.  Movement in my face is starting to come back a bit more and my mom thinks I have a Mona Lisa smile right now, but I have a long ways to go before all of the fine muscles in my face are functioning again.  I am also lucky that my stomach digestion is almost back to normal.  I can’t eat too many of my favorite foods (grilled cheese, quesadillas, chocolate, etc), but I am allowed to indulge myself in small portions if I am eating healthy the rest of the time.

The biggest and best news is that I am finally able to sit up on my own (although it’s still difficult) and hang my legs over the side of the bed to touch the floor with my feet!  

My wonderful friend, Laura, who is a physical therapist in England arrived in Puerto Vallarta this past week to continue her Therapies Unite charity, which helps disabled children and adults in the PV area with musculoskeletal and neurological problems to improve their mobility and provide them with access to healthcare that they would otherwise not be able to afford (http://www.therapiesunite.com).  She came over to visit and brought a sling-like hoist that allows two people to easily and safely lift me out of bed into a wheelchair.  As a result, I was able to finally get out of bed for the first time in almost two months yesterday (Jan 3rd) with the help of Filiberto (Berto), my nurse, Joshua, and Laura who was leading them.  I was nervous about how it would feel on my body to sit again, but surprisingly it didn't hurt my feet, lower back, hips, and butt (which are areas where the muscles are still somewhat dormant) as much as I thought it would.  

In a sitting position, I am able to focus on strengthening my calf muscles, which have lost almost all of their muscle mass and look like skinny little twigs since it’s hard to exercise them laying in bed.  I can also exercise and stretch my feet and ankles to get them prepared for standing and walking by putting some of my weight on them.  From the lack of standing or walking for over two months, the nerves in my feet have caused my feet to curl a bit in the resting position, although they can be stretched to the proper position.  I just have to re-train them to get them back to normal, which will come as I practice more.

My nurse, Berto, was gone on vacation for 3 days after he identified and started treating the problem with my hips and butt with massage therapy and applying muscle relaxing creams.  My physical therapist, Oscar, continued to treat the area with ultra-sound to help increase the blood flow, electrode therapy, and also a bit of massage therapy while he was gone.  I also continued exercising my hips and legs in his absence.  When he returned on the 2nd of January, he couldn't believe the progress that I had made in such a little bit of time.  He was excited that I am now able to get into the wheelchair and thinks that I will be walking within a month (February).

Today, with the help of the sling, my dad and Joshua were able to help me get into the bathroom so that I could take a hot shower (instead of the wash cloth baths I had been taking since I was restrained to my bed the past two months).  Although it hurt somewhat to sit, I can’t explain how wonderful it was to take a shower again and feel really clean again.

Laura came over again today and did acupuncture on the areas causing problems in my hips.  She has offered to continue doing the acupuncture to help stimulate the nerves in my hips, butt, legs and also my face. She also has a plan to help me get up and start standing and walking soon.

I am so happy from all of the help that I am receiving and am glad that things are finally looking promising.  I can’t begin to describe the different types of intense pain that I have experienced since I contracted this disease, but luckily the pain is now more controllable.  I know that I will have more as I start to stand and walk again, but I’m looking forward to getting back to normal and hoping that I’ve gotten through the worst of it.  My goal is to get out of this bed and be able to play with my son, Xavier, soon, as I’ve missed that the most. 

Thank again for all of your love and support!

2 weeks later...

It’s been two weeks since I’ve posted an update, so here’s what’s been going on…

On Saturday, November 10th, Joshua and his cousin, Aldofo, went to Plaza Hildago where Aldofo had heard that an organization called PUSH was giving out brand-new wheelchairs, walkers, and other medical equipment for free in front of the church to those in need. They brought a letter from my doctor explaining the disease I had and why I needed a wheelchair. They were given a ticket and told to return later in the day to see if I qualified to receive a wheelchair. Luckily, I was one of the fortunate winners.

On Saturday, I also had a great, but painful physical therapy treatment. My therapist, Oscar, identified the areas on my legs and feet where I need the most help (and that are causing the most pain) and has been focusing on those areas in my treatments. I am unable to flex my feet at this time because the nerves that control that part of my legs haven’t woken up yet and rebuilt the connections to my brain when I tell them to move. Because of that, my calf muscles tighten up every few hours since they aren’t being used, which is very painful. Oscar showed my family how to help stretch my calves by pointing and flexing and moving my feet left to right. It also helps to separately massage my calves, shins, and the area on the top of my feet where the nerves collect. Joshua and my parents now help me do this several times a day to help lessen the pain.

Oscar is an incredible physical therapist and I’m lucky to have found him. He has treated several other patients with this disease and is determined that I will be walking within 2 to 3 months instead of the typical 6 months or more. I work with him every day for an hour and over these past two weeks, I have made several strides.

When I left the hospital, I could only move my feet left to right and point them slightly, but not flex them. I also had weak movement in my lower legs, arms, upper body, and hands. The rest of my body was numb – upper thighs, hips, stomach, back, hands, feet, and face (no movement other than being able to talk funny). Also, I couldn’t feel my bladder and my intestines moved very slowly, which is why I am still on a catheter and on a strict diet until those nerves wake up.

Since I’ve been home from the hospital, Oscar has helped me regain feeling and movement in my knees, thighs, hamstrings, hips, and butt. My feet move left to right with more distance, I can point my toes more and slightly flex them, too. I am working on lifting my legs still and can lift my right knee and lower leg about a ½ inch or so from the bed. My left leg and knee can lift about an inch and extensions in both legs improve every day. I have regained some strength in my thighs again and exercise them by having someone bend my knee up and hold my foot while I slowly move my knee left to right. Oscar comes up with new exercises every day and my strength increases.

Since I am on the computer every day, I exercise my fingers from all of the typing I do, but I still have to stretch them and bend each joint separately throughout the day because they get stiff. My arms, chest, and shoulder muscles didn’t lose much strength so they are recovering more rapidly than the rest of my body.

My face muscles are the slowest to recover. I have daily ultrasound treatments to help stimulate the circulation and nerves (it feels like a facial). Oscar also massages my face and does exercises to help wake up the nerves. I can slightly move my eyebrows, but nothing else has started moving yet.

I also have a night nurse now, Filiberto, who is very experienced – I feel like he is a knowledgeable as my doctor. He has treated patients with GBS, as well, so I get a second dose of physical therapy every evening before I go to bed. Filiberto doesn’t speak a lot of English, but he’s teaching me some Spanish and I am, in return, trying to teach him some English. In the meantime, he understands my broken Spanish and gestures well enough to know what I need help with. He is also determined to help me start walking again as soon as possible.

My doctor, Dr. Peña, makes house calls about every other day to check on me. The catheter that I had in my neck for the plasmapheresis treatments was taken out about a week after I was home. Dr. Peña was worried about a possible infection, so it was removed to avoid that. He thinks that I am improving well.

On another note, Xavier has started attending Diactics daycare, which he absolutely loves. Someone was kind enough to donate several months of care to us so that we would have someone to watch him for part of the day while I focus on physical therapy and Joshua can work. My parents also get a break from a very active 1 year old. Xavier loves being around other kids, so the daycare is perfect for him to get some social activity.

Everyone can agree that my recovery is going well, but we are just taking it day by day. Three months seems so far away and I cannot wait to get out of this bed, but am trying to work hard with my therapy and be patient. I am in a lot of pain every day as more nerves wake up and I also experience muscle pain from the therapy. I’m trying my best to stay positive knowing that the next day there will be less pain and I will soon be pain free and back to my normal self, but some days are harder than others. This disease has turned my whole world upside down in every way possible!

I am very grateful for Joshua and my parents who are taking care of me, Xavier, and everything else in my life that I am unable to do at the moment. More times than not, they are exhausted and in bed by 8 or 9 PM. They also get a little stir crazy (like me) and yearn to get out of the house even if it’s just to run an errand. I don’t blame them one bit.

Anyhow, I will try to keep posting information about the progress I make or just to relay some thoughts or experiences. 

Thank you to those who have made donations. It’s helping us to pay for the nurses’ care, physical therapy, medicine, and hospital bills. I hope that everyone had a nice Thanksgiving!

YPO Happy Hour

As previously mentioned, this month's YPO Happy Hour will be in support of Tracy and family. Event details are as follows:

El Dorado
November 27, 2012
7:00 pm

There will be a donation jar, a 50/50 raffle, and Provecho will be there selling their decks and donating $50 pesos from each one sold.

2 x 1 National Drinks
30 peso Pacifico

Come out, have a good time, and help a friend in need.

**It seems the donation link was not working on this page for a few days but it is back up and running so if you're feeling jolly please open your hearts and wallets and make a donation. :)**

Thanks again to everyone for your continued support.

Finally home!

Now that the treatments are over and the pain has subsided a little, I will start to contribute to the blog myself.

I received my last plasmapheresis treatment on Wednesday, November 7th and it was slightly different from the previous ones.  I received a new medicine in addition to the plasma and had to sign a waiver prior to the treatment acknowledging the possibility of more serious side effects, which unfortunately I experienced.  The beginning of the treatment went well and I was prepared for the usual chills and shivers by starting the heating pad and asking for heated blankets from the dryer before everything started.  My nurse, Mari, was nice enough to heat a new blanket for me every 30 minutes, but luckily I wasn't as cold as before – that is, until the very last cycle, which was one of the most painful 20 minute cycles of all the treatments.  As soon as it was over, I was begging the nurse for pain medication, which I then needed more and more of the rest of the day.  I also developed a fever, rash, and rapid heartbeat.  At one point, I honestly didn't think I would feel well enough (or my vitals would be stable enough) to go home the next day since my pain level remained very high throughout the day and the entire night.  

Luckily, I felt better Thursday morning and the side effects of the last treatment were gone, although I still was in a lot of pain. I finally headed home after thanking the nurses and other staff members who helped me through the past 19 days that I was at San Javier Marina hospital.  I rode home in my first Mexican ambulance ride, which surprisingly went smoothly.  To be honest, I thought I was in for a crazy ride like most of the passengers on the taxis and buses experience here on a daily basis, but I felt pretty safe.

Joshua and my parents had prepared my room at home by renting a hospital bed and moving some furniture around.  They placed the bed so that I had a nice view of the blooming flowers in our back yard and could also see the downstairs living room and dining room areas with our bedroom doors opened.  When I arrived, Xavier stood up in his crib, which is in our room, and was so happy to see me.  He was clapping and laughing and yelling with excitement.  I was just as happy and excited to see him.  It was a nice welcoming home gift as we had spent most of the 19 days that I was in the hospital apart from one another.  Later that day, I had my family wheel my bed and his crib together so that we could see each other.  Although I didn't lose feeling in my arms, they are still weak and it’s hard for me to hold onto Xavier when he starts moving around suddenly when he is in my lap.  Anyone who has met my son knows how strong and wiggly he is. Of course, I want to hold him and cuddle with him as much as I can, but I need to regain more strength first.  He does, however, like to push the buttons on mommy’s bed to move it up and down.

Thursday, I spent the day resting, but I did my physical therapy exercises with my nurse, Erik. Erik and I had a little trouble communicating as his English and my Spanish speaking skills were lacking, but we managed.  While I understand a lot of Spanish, I still have difficulty speaking it.  So, I might be spending some of the next couple of months finally learning to speak Spanish since my physical therapist and nurses don't speak a lot of English.  I had a lot of pain during the night, which my doctors have said is normal since hormone levels change at night, but my Dad stayed up with me and helped me change positions in bed every 2 to 3 hours when I would wake up in pain. I was very grateful for him to help me.

My pain level on Friday was much less during the day (5 out of 10) as Erik showed my family how to massage my legs and feet whenever I felt pain.  He also said that I need to keep massaging my face to stimulate the nerves to reconnect.  We decided that having a nurse at night was probably better since that is when I need the most help dealing with my pain by treating it with massages, moving positions in bed, and needing shots of pain medication administered.  So, Friday night I met Yolanda (or Yoli), who was very helpful throughout the night.  She also didn’t speak a lot of English, but we were able to communicate well.  Despite her small size, she was very strong and able to move me back and forth on my sides throughout the night.

My physical therapy is now every day and I am working hard at regaining my strength and movement.  Most of my muscles are very tight since they haven’t moved in over 3 weeks.  I am surprised at the lack of flexibility as I used to practice yoga and had maintained that flexibility even though it’s been a while since I have practiced.  I hate to admit that I have been reluctant to attend a yoga class in Mexico since I’ve been afraid that I would look stupid when I didn’t understand when the teacher said “downward facing dog” or any other yoga positions in Spanish.  If you have seen the funny YouTube videos “Shit Gringas Say” versions 1 and 2, then you know that this is one of the stupid things that us gringas might say and think when we move to Mexico.  If you haven’t seen the videos, they are definitely worth watching.

Anyhow, back to the physical therapy – it’s going well, but painful as my muscles are stretched.  The first part of the treatment, the therapist puts electrical patches on different leg muscles and sends a pulsing electrical current to stimulate the muscles and nerves.  He also uses a special electrical device for waking up nerves in my face.  It feels like getting a facial every day as he also massages my face when he’s done.

I can tell that the therapy is working as I am seeing small improvements every day.  The right side of my body is worse off than the left, but I was told that while the disease worked from the “toes to the nose,” the recovery went in reverse.  My numbness started in my right foot so that will probably be the last part of my body to fully recover.

I’m trying to stay positive as I know that it is a biggest part of the healing process.  I am blessed to have so many family members and friends helping me by praying for me and sending me positive energy.  I also have friends sending me reiki through distance healing, which is something I also practice on myself when I am able to.  Most of all, I am very grateful for how much Joshua and my parents do for me on a daily basis as I am completely dependent on them for everything.  Being an independent person and used to doing things myself and for others, it was (and is still) hard making this transition, but I am thankful that they are here for me.

Tracy's mom, Josephine, has been keeping such a great record of Tracy's progress and been such an amazing support to her daughter. Here is the latest news as written by Josephine.

Tracy did very well with her plasmapheresis treatment yesterday.  She still had chills and BP went down but we had heating pads and blankets warm from the dryer ready for her. She did not have cold sweats either so recovery was quicker than all times before.

Gary flew in just after she finished treatment and the techs left, and she was very happy to see him. Josue had left in the early morning hours to take the bus to El Tigre to retrieve Xavier who had gotten sick with sore throat and fever while there. They had taken him to local doctor but we were concerned and with Gary being here thought we could handle it. We got him to a pediatrician this morning at the hospital and started him on 2 medicines by 11 am and he is resting comfortably here in Tracy's room.

Tracy gets her 8th treatment tomorrow and the plan is to release her on Thursday morning. The nurse who helped get Tracy her MRIs, etc. on that critical Saturday has helped us again by getting in touch with some medical equipment and personnel to help in the early days. They include a hospital bed, hydraulic lift to help get her in and out of bed, wheelchair, and nursing staff to help us with bathing and medications.

She had a physical therapy session again this afternoon. New exercises included ones for her facial paralysis, leg lifts while seated (her first ones were while laying down). She also had electrical stimulation to back and legs as well. She is in good spirits this afternoon. Gary and I are babysitting Xavier in her room while Josue attends class. We had to take him to the pediatrician this morning as he's been feverish and had a body rash. The doctor said he had a throat infection and prescribed 2 meds which it took 3 of us to administer. Thank goodness he needs it just once a day and has rested pretty comfortably in our arms all afternoon.

We realize that recovery will be long but are grateful for all the help of staff here and for all the love and support from family and friends. Tracy has a fighting spirit and is working hard to battle this terrible syndrome.

Provecho Vallarta comes to help!

Yesterday morning I received a phone call from one of the wonderful ladies of Provecho Vallarta, Michelle Mayer Fulfer. She called me to find out how Tracy was doing and to offer up an amazing offer which would donate funds to Tracy and Josue.

With the purchase of the 2013 deck which is now available for only $300 pesos, Provecho Vallarta will throw in the 2012 deck for free AND donate $50 to Tracy and Josue. To get this great offer and to support Tracy, all you have to do is to pick up your cards at Bang-On T-shirts (Avenida Mexico 1193) or email provechovallarta@gmail.com, let them know you want to purchase a deck in support of Tracy and they will get one to you!!!

For those of you have been living under a rock and aren't familiar with Provecho Vallarta yet, here is a little run down:

About Provecho

We have put together a deck of the BEST Puerto Vallarta has to offer... A Vallarta "It List", if we may be so bold. Provecho Vallarta is made up our favorite restaurants, spas, shops and businesses in town...the places we go to over and over again to the places we save for the most special occasions.

How it all goes down: It's Simple! Each Deck contains 52 Cards. Each card features one of our FANTASTIC merchant partners including a description of their business and all vital information. Each card represents a $100 MXP gift certificate off of a Minimum Purchase of $250 MXP (excluding tax and tip).

Each Deck retails for $300 MXP. Now that's a "Deck of a Deal"! A $5200 peso value for only 300 pesos. Three visits to any of these fabulous businesses and the deck has paid for itself. Who doesn't treat themselves at least 3 times a year?

 With such easy savings to be had this is also a must have item for tourists. And they also make great stocking stuffers. :)

 I can't express enough how much the support of caring business owners like those at Provecho Vallarta has and will aid Tracy and Josue. Thanks, PROVECHO!!!

Setbacks

There have been some setbacks which unfortunately have delayed Tracy's hospital release.

I'm going to play a bit of catch up with updating Tracy's condition. I had originally wrote yesterday's post on Tuesday night from the airport but I could not upload the photo until yesterday afternoon. During that day and a half span, a LOT has happened so I apologize lumped together updates.

For this post I am going to include the email I received from Tracy's mom, Josephine, yesterday. When I read the email it felt as though someone reached inside of me and was squeezing my heart with all their strength. It really made me think about the emotions that Tracy is going through being a mother and unable to share in the celebration of Xavier's first year of life, but it also made me think about Tracy's mom and how this must be for her. One thing I do know however is that a mother's love knows no bounds and that alone I'm sure will be a real guiding force in helping Tracy to recover. From her own personal determination to the fight that Josephine puts up on Tracy's behalf as well, she will get through this in time.

Josephine wrote:
Tracy had a setback during her 5th treatment of plasmapheresis. Blood pressure dropped way low 80/44 and she got cold sweats and shakes and then shooting pains down her leg bones and into ankles. She had 3 heavy blankets on her and hot water bottles made of latex gloves were used to warm her hands. She was in pain all day into the night and begged for morphine that they did not want to give because of blood pressure. The blankets did come off one by one over a few hours and the sweats went by late afternoon. She had little appetite and I really had to push jello and mashed potatoes and juice on her. She also required a few nebulizer treatments as she was a little congested and couldn't blow her nose. She also had to have catheter reinserted as she knew her bladder was full but couldn't use the muscles to expel.

She had a halfway decent night and today seems improved. She ate a good breakfast of milky oatmeal, banana, mango, and pears, jello and juice. She was able to do her leg, arm and breathing exercises with me providing the resistance. Tracy also got a shower and hair wash. Dr. Pena came in to see her in the shower and check for signs of marks that might lead to bed sores. She has a small one on her elbow and a 3 inch red mark under one arm that we need to watch. Tracy is dead weight to lift and trying to shift her in the bed or lounge chair often takes 3 people. I don't know how we will manage when we get her to the house. Gary is coming Monday but he will not be able to lift her and most of their guy friends already have bad backs. Lunch has just arrived so we'll see if she can eat some chicken soup and more jello!

Josue is leaving now to get a few things from home and to pick up his mom and Xavier at the bus stop. We will try to do a little celebrating this evening. Xavier is 1 year old today. Josue has his high school class at 4 with a test.  I know he will be distracted wanting to get back to see Xavier.

Keep us in your thoughts please. Tracy and I do a lot of praying. We've watched the You Tube videos on this syndrome and the recovery rehab and she knows it may be a long process. She can hardly manage 1 lb. weights.