Hi Everyone, sorry I havent been able to check in lately, had been sooo tired with all thats happening.

Dad was admitted twice to hospital this week, first for his breathlessness and dehydration, second for his stent procedure. As you all may have known, my dad has oesophaegus cancer stage 4, which makes it hard for food to go down. He has lost more than 20kg since diagnosis in 2007, and 10kg in the past mth alone. He was dehydrated as he couldn't take in water, once he drank, he vomitted. It was weird as he could take solid food (like biscuits) but once he took a sip of water, out everything would come. So we had to send him in on Friday as he had not taken water for 2 days. We spent 6 hours in the ER that day, and 3 hours in the ward, before leaving at ard midnight to rest. Drs could only put him on a drip, hydrate him, then send him home till his stent procedure scheduled on wed. He was admitted on tuesday, and right after the stent procedure, he vomitted the whole day. Till today, he's still vomitting. Pains me to see him going through all these..

As for myself, I'm glad to say that my best friend whisked me away for a short 2D2N trip to a nearby island, where we simply relaxed, had spa and messages on Sunday. Lol. ITs the best birthday present I've got this year. Thankfully dad was discharged before we left, and we made it back on my birthday, the day dad was admitted to hospital for the stent.

Was also busy the past 3 days helping to appeal for blood donors for my friend's close friends, one of whom has leukaemia (the poor guy's only in his 20s), while the other lady (35 yrs old) was in a coma after an op to remove a blood clot. Some people responded, while some were skeptical. Thankfully we managed to find enough donors for the boy while the lady who was in a coma, sad to say, doctors found a 2nd blood clot yesterday afternoon, her condition deteriorated, and we received news today that she has been declared brain dead. Everyday we have people fighting for their lives, and this makes me even more determined not to let ALS rule my life. Its just something that I have, but it doesnt have me. =)

My condition however, hasn't been too good. Have to walk with a cane now, and its getting more difficult sometimes. Wake up feeling like I haven't slept, and not to mention the fascics and cramps that come with it. Am already on the maximum dosage for clonazepam for the cramps and pain, but it only lessens the pain, doesn't stop the cramps. Muscles have turned to "vibrating" from "twitching" and its really uncomfortable. Its like my legs don't ever rest. My left eye muscle has also been jumping for hours each day, making it difficult to read sometimes. My wrist is becoming smaller now, and its becoming straighter, like the meat's disappearing. Its extremely obvious, and friends have been commenting that I look like a stick. Lol. My tongue has this nerve that almost always cramps up, making my tongue stick to the right, elevated. Weird.

Its funny how I still have the strength, but yet sometimes, I feel floppy. I hate wearing elastic pants now. Lol. Its just so difficult getting them on, somehow. Just today, during dinner, I felt so breathless I didn't know why. Was really hungry but yet chest was so heavy that I just couldn't eat. Does anyone know what could be wrong? It happened yesterday evening as well, and I felt sooo giddy I had to sit down.

I still miss everyone, and am reading the posts to see what everyone has been up to. However I may have missed some, and forgive me if I'm asking again here.

Rach: How's the dx process going? Did they give you a dx? Are they treating u well? I'm so glad to hear from u on fb! Lol.

Erin: I'm glad the IVIG's working for you. My neuro's also suggesting it, though am not sure if I should take it. Hope the nurses treat u nice, and that your symptoms start going away!!!! HAve they confirmed the fibro dx? Is there anythng they can give u to make it better?

Pat: How are you now after the visit to the hospital? Is everthing under control? What happened for it to occur suddenly?

Shar: Thanks for the update!!!! Its so good to hear from u again.

Simon: How have u been? I can't seeem to catch ur posts. Lol.. Are u around?

Joanmarie: How are you now? Better after taking the meds?

Rezmommy: How are the cramps? BetteR???

Nicky: Have u started radiation? Is it tough on you? Sending u lots of love and strength from here!

scarpettafan and bluesky: Sorry to hear of your dx... But stay positive, and I'm sure things will start looking up soon! Most impt thing is think of positive thoughts!

Annie: how are u? Heard that u've been feeling tired recently, why is this so? Are you better nowwW? *hugssss*

The new people: Hello! Welcome! This is a great place, and like me, you'll grow to love these people so much. Lol. They're in my thoughts every single day.

I miss all of you badly, and I hate not being able to keep up with everything. I'm sorry I can't type more, hope that this finds all of you well!!!

Connie,
I am still around! Just hanging in there and living day to day, some good and some not as good! Hope all is well with you.
Hugs to you,
Simon

So glad to hear from you. Im pleased you had a good birthday after all you have been going through. Sending lots of love to both you and your dad xxxx

Still no diagnosis! I heard from London last week and they said their waiting list is several months long and they would contact me as soon as they had some appointments free. So how long is a piece of string I guess.

I haven't heard from France so I will email them again on Monday. I hope they haven't forgotten me.

Health wise not good. My parents came to see me today and the first thing my mum said was by the colour of you, you should be in bed. Yes mum I should have been! But I wasn't. Just seem to go from bad to worse. But Im hanging on in there.

Is there anything else they can try drug wise to ease the pain and muscle cramps? Im so sorry you are having to use a cane now. Good for you helping with the blood donor drive. Im so sorry to hear about that lady though- shes the same age as me.

I do exactly what you do, I hear stories about other people who are worse off than me and just fight! At the moment though Im having a wobble LOL.

Lovely to hear from you.

Love
Rach xx

Connie, you are such an inspiration!! My cousin has ALS and has chosen to shut down and surround herself with negativity. It's sad that she decided early on to let ALS define her. I admire your spirit very much.

Happy Birthday!! (belated). I'm so glad you got to enjoy it with your island retreat. Sounds like it was delightful.

Sorry to hear about your Dad's trouble. Hopefully he is more comfortable now.

Take care - - love reading your posts!
Sue

Hey Connie,

Always good to hear from you. How nice you got to spend your birthday on an island...good for you! Sorry to hear about your Dad and hope he's doing better. You sure have been keeping busy...I love your generous spirit and positive attitude. I'm feeling much better and the doctors are trying to find out what is going on. I sure don't ever want to go through that scare again! MG has flared up because of it, but the mestinon and rest has it under control. I'm so sorry for all you are going through and I hope you get some relief soon. You take good care of yourself and hope to hear from you again soon.

Big Hugs,
Pat

Hey Connie,

It's so good to hear from you!

I'm glad that you had such a great b-day! Going to an island sounds fantabulous!

I'm so sorry about your dad...It's so hard when there's sickness everywhere you look...You and I have a lot in common...My dad is very sick too, but not with cancer. But his condition is such that he is in a nursing home because he has seizures regularly and my mom cannot take care of him due to sickness as well. For a year or so, a few years back, I was taking care of him, but my health started to deteriorate and I couldn't do it. I feel a lot of guilt, but I feel better knowing that he is safe with 24-hour care. He lives close-by, so we visit him often and bring him over often. Illness is hard.

It's so strange what's happening these days. We also have a friend who has cancer. He is my age; 26. He has testicular cancer which has spread to almost all of his lymph nodes. He's going through chemo., radiation.

You said that you're feeling very tired in the mornings. I can relate. I have a lot of chest weakness, and I think that it causes a bit of apnea. I'm actually thinking of getting a bi-pap. Are you using one of these? They help A LOT, from what I've heard! You will feel less tired in the mornings and if you happen to find that you get headaches in the mornings too, this will get rid of those.

As for the muscle cramps/twitching, I get those too mainly in my hands and chest a bit. Have you ever looked into baclofen? I heard that it's very good for spasticity. Also, make sure that you're getting your electrolytes. Drinking a gatorade once a day might help a bit. I get a lot of cramping/spasming in my feet also and I find that a banana helps.

Try to eat lots of fat! I know that I say that all the time, but there's something about it that seems to help the nerves, talking from experience and what I've read. Coconut fat is good, as well as milk, butter and even animal fat. It'll keep your weight up and it seems that it slows the progression.

As for me, it turns out I don't need radiation, thank God! My oncologist said that my tumour was completely encapsulated, so I don't need. She also said that it was smaller than what my surgeon said. I'm relieved about that.

I'm still having problems with my hands, with stiffness/weakness and I've been having some heart issues for a long time, which have lately, become a bit worse, mainly in the form of 'skipping' 'too many' heart beats. I feel pretty confident that I have this other condition, which is genetic. I'm going to see my neurologist at the end of the month, and I'm going to asked to be tested for it. This other condition explains everything I've been experiencing for the last many years, including the thymoma to some degree. My mom has similar symptoms as do many others in the family. Mine are worse, which makes sense as it tends to get worse per generation.

I completely agree with you. It sucks to be sick, but so many others are sick too. We only see from our owns eyes, but we all share this 'individual' experience which is our commonality. In one, there are many, and many, there is one. It doesn't matter what anyone's going through; we've all felt vulnerable, scared, weak, sick, happy, sad- these feelings connect us and we can help eachother with them!

Talk to you soon, girl!
Nicky

Connie, I'm a bit overwhelmed today and about all I can say is that I'm sorry. Sometimes I have a hard time dealing with a lot of health issues because I have so much going on myself. And my dog just had a tooth abscess, teeth pulled and I'm trying to keep his pancreatitis from flaring due to all the drugs.

What you are going through is so hard. And you still have the strength and faith to help others. Truly amazing.

I wish I could give you a big hug, sit down and watch a good movie with you just to hear you laugh.


Annie

Hello sweetheart! Sounds like you have been through a terrible time...I am so sorry!

Your sense of humor and love for others make you one in a million....truly! You are so tough and sweet @ the same time! I cannot tell you how much I ADMIRE you!

As for me, everything is fine! The nurses are sooooo sweet to me! I love them all so much! They even had a birthday cake and a banner for me! LOL!

IVIG has been great! It is great stuff! My pred has been cut to 20 and I will be recieving infusions every 3 weeks...........soon I will be feeling like my old self - hopefully

Hang in there, sweetheart! You are an INSPIRATION for all of us!

Love,
Erin

Hi Connie,

so good to hear from you. I'm glad you had a good birthday, and got away for a couple of days.
Sorry to hear you Dads not been to good.
You really are an inspiration, all you are going through at the moment, and you still manage to sit and write a long post.
Thinking of you lots,
take care
Kate

It's so wonderful to hear from you! It's really great that you were able to go to a spa, especially on an island, for your birthday - and that you have a good friend to take you there. I think it's so important to treat yourself to some relaxing and fun times as much as possible, even in spite of everything else.

I am so sorry to hear about your dad. My brother had the same type of cancer. It's so hard when you're fighting your own battles with illness and also have loved ones going through the same battles that you want to be there for and support. I admire your courage and compassion for others. You are a role model for us all.

I'm thinking of and praying for you and your dad. I hope the week ahead brings you comfort and peace.