So Scared

[imsohungry]

Hey everyone,

For anybody who reads my posts/replies, you all know I'm a fairly "upbeat" optimist.

But I just need to cry, vent, or something...truth is I'm scared.

Illness in my family and death at an early age (30's) is very common. Cancer affects nearly everyone in our family: My grandmother, grandfather, mother, great aunts, etc.

Autoimmune disorders are eating my family alive....literally.

I've now hit my early 30's and for some reason, I'm scared.

Unlike most in my family though, I've been hit with everything (except cancer). My family and I joke that it's all in the way "God shaped the egg." But honestly, I'm tired and sick and scared.

My diagnoses are as follows:

Refractory epilepsy

Lupus

Sjogrens

Celiac

Interstitial Cystitis

Esphogitis

Etc.

I am literally living in the body of an eighty year old at 31. My blood and body are checked constantly. I hurt myself during seizures, my muscles/joints throb from the lupus, and I sleep elevated so that I'll quit tasting my own stomach acid due to the reflux. I can't drive, cook, cross a street, or bathe alone due to my frequent seizures.

The medical bills are out of control (and we have good insurance). I take 32 pills everyday. I am supposed to take more, but I never filled the prescription for two of them (I just can't stand the thought of swallowing one more pill).

I have this silent, but very real, fear that I won't live to see my son grow up. I can't believe I just wrote that...but it's true.

I do everything the dr.'s tell me to do. I take my medicines, eat gluten-free, keep my appointments with them, sleep enough at night, etc. I have been poked, scanned, and even have a VNS (kind of like a brain pacemaker) implanted in me. I mean, I try so hard!

I developed an "episode" of optic neuritis my senior year of college in both eyes. I wore a patch over one eye just to take my final exams to graduate!

Please forgive my vent. I'm not usually like this. I know I'm blessed. I guess it's just been a tough week.

-Julie

[jerseyangel]

Oh Julie, sweety, it is more than ok to vent here. I only wish I could do more than just listen.

You're so incredibly brave, and are living a full life despite what has been thrown at you. Some days are bound to be like this. I think it's healthy to acknowledge your feelings. Can I tell you I'm in awe of all that you do, considering?

I hope tomorrow will be brighter

[whitball]

I'm sorry that you are so miserable. Vent all you want. My support is there. Good luck

[gfpaperdoll]

Oh Julie, I know what you mean, It just seems that some families get everything. It is just so sad to see the young ones die of cancer and things.

I think you should vent a little more, maybe once a day, that is only a few minutes & you have 24 hours in each day, so there is plenty of time to vent a little & recoup for the rest of the day.

Are you doing everything that you can to do nice things for yourself. It does not have to be big but a couple times a day, do the little things that give you a smile. Listen to the birds, go outside for the sunset, have tea in your best cup, have something special to read...

I reward myself a lot but then again I have a real friend that keeps telling me to do things for myself, & heck, I have started doing it!!!! (my friend has celiac, osteoporosis, & HS)

((((hugs))))

[ravenwoodglass]

Oh I wish I had some answers for you. Then I would have some for me. I have the same fear as you, I have watched my family die from celiac related disorders at a very young age. I pray everyday for just 5 more years and I am not experiencing even half of what you are going through.

I had a number of the same diagnoses that you did and was fortunate that most went into remission, it did take a long time though. As another poster said sometimes all we can do is try and get as much as we can into the time we have. I hope you can find some time each day to just listen to the birds, they comfort me in my early often painful wakeups and for some reason I find a bit of peace at night when I watch them come home to their roosts and watch the bats fly.

It is hard sometimes and sometimes it just doesn't seem to be worth the pain. I think the hardest time for me was the day my teenage daughter told me the family would understand if I committed suicide. Believe me the thought had crossed my mind more than once, the only thing that kept me going was my kids and here was my youngest tellling me they would understand if I went 'home'. The pain in her eyes that morning made me wonder if maybe not being here would be the right thing to do. I am glad I did not give up. My recovery was very slow and in baby steps for a couple years but things are now much better.

I hope that things improve for you and that someday soon at least a couple of your diagnoses will have a 'in remission' after them. If anyone had told me 5 years ago that I would ever even be able to type a response without cringing in pain, that I would be able to walk unaided, that my seizures would become a rare occurance, that I would be able to sleep the night without waking in pain, that I would be able to read a book or drive a car and know I would remember how to start it when I got back in or even that I could mow a lawn in less than 2 days I would not have believed them. I hope in 5 years you can look back and say the same.

One last note, you are on a lot of scripts are you absolutely certain they are all gluten free? If any are generics please make sure your pharmacist or you check them EACH time they are filled as generics can change binders at will and are often not suitable for us. Also make sure each doctor knows what the other prescribes, many drugs can cause side effects that can appear to be another condition. The Sjorgens is a prime example of that. I still wonder whether I actually had that or whether it was a side effect of all the other meds I was on. Mine disappeared when a couple of the drugs I was on were able to be stopped.

I hope things improve soon for you, don't lose hope. You are doing all you can. My family thinks I am silly because I call often just to say I love you. I don't think they realize it is because I know I may not be here tommorrow and I just want to make sure they know what they mean to me. Hold your children and loved ones close and know that they know how much you care. I pray we will all be able to do so with our grandchildren but only time will tell. Your not alone although I know at times it probally feels that way.

[BettyL.]

Hey everyone,

For anybody who reads my posts/replies, you all know I'm a fairly "upbeat" optimist.

But I just need to cry, vent, or something...truth is I'm scared.

Illness in my family and death at an early age (30's) is very common. Cancer affects nearly everyone in our family: My grandmother, grandfather, mother, great aunts, etc.

Autoimmune disorders are eating my family alive....literally.

I've now hit my early 30's and for some reason, I'm scared.

Unlike most in my family though, I've been hit with everything (except cancer). My family and I joke that it's all in the way "God shaped the egg." But honestly, I'm tired and sick and scared.

My diagnoses are as follows:

Refractory epilepsy

Lupus

Sjogrens

Celiac

Interstitial Cystitis

Esphogitis

Etc.

I am literally living in the body of an eighty year old at 31. My blood and body are checked constantly. I hurt myself during seizures, my muscles/joints throb from the lupus, and I sleep elevated so that I'll quit tasting my own stomach acid due to the reflux. I can't drive, cook, cross a street, or bathe alone due to my frequent seizures.

The medical bills are out of control (and we have good insurance). I take 32 pills everyday. I am supposed to take more, but I never filled the prescription for two of them (I just can't stand the thought of swallowing one more pill).

I have this silent, but very real, fear that I won't live to see my son grow up. I can't believe I just wrote that...but it's true.

I do everything the dr.'s tell me to do. I take my medicines, eat gluten-free, keep my appointments with them, sleep enough at night, etc. I have been poked, scanned, and even have a VNS (kind of like a brain pacemaker) implanted in me. I mean, I try so hard!

I developed an "episode" of optic neuritis my senior year of college in both eyes. I wore a patch over one eye just to take my final exams to graduate!

Please forgive my vent. I'm not usually like this. I know I'm blessed. I guess it's just been a tough week.

-Julie

So sorry for your problems, Julie. I like you to know you are not alone with being scared. I am facing my 3rd hiatal hernia in 6 years. Like you I am scareas I nearly died the last time and spent 3 weeks in the hospital. I put my trust in God and he sent me to this forum and I feel so much better after reading the number of posts. BTW, I have diagnose with many of the same diseases that you mention minus cancer. I do take supplements and have been taking them mst of my life. I will keep you in my prayers. My problem seems minor compare to yours.

Betty L

Fort Running Bear, ID

[imsohungry]

Betty,

My prayers go out to you. I had a hernia repair when I was a toddler, but praise God, have never had another one. My best wishes to you.

I would like to thank everyone who replied. You all are wonderful support.

There are two country music songs that kind of sum up my feelings on all of this health chaos; I often think of them whenever I get down because they remind me not to give up hope.

One is by Travis Tritt: "I'm gonna be somebody, one of these days I'm gonna break these chains"

The other by Garth Brooks: "Life is better left to chance. I could have missed the pain, but I'd have had to miss the dance."

Probably sounds corny, but sometimes it's the little things that pull us through a bad day. You know what I mean?

Blessings to you all. -Julie

[BettyL.]

Betty,

My prayers go out to you. I had a hernia repair when I was a toddler, but praise God, have never had another one. My best wishes to you.

I would like to thank everyone who replied. You all are wonderful support.

There are two country music songs that kind of sum up my feelings on all of this health chaos; I often think of them whenever I get down because they remind me not to give up hope.

One is by Travis Tritt: "I'm gonna be somebody, one of these days I'm gonna break these chains"

The other by Garth Brooks: "Life is better left to chance. I could have missed the pain, but I'd have had to miss the dance."

Probably sounds corny, but sometimes it's the little things that pull us through a bad day. You know what I mean?

Blessings to you all. -Julie

Thanks for the prayers, after reading some of the things others are going through on the forum, my problems are minor.

[imsohungry]

Thanks for the prayers, after reading some of the things others are going through on the forum, my problems are minor.

No, Betty, your problems are just as important. And they are not minor, if in your eyes, they are not minor. Everyone gets equal support. If you are scared and hurting, come vent and get the support you need. Prayers headed your way.

Blessings and a hug,

Julie

[jerseyangel]

Well now--anyone who quotes Travis Tritt is A-OK in my book! And a person of extremely good taste I might add

Listen to "Feels Like Today" by Rascal Flatts

Open Original Shared Link

[Canadian Karen]

Julie,

I just wanted to let you know that you have every right to have "one of those days" where it literally feels like a losing battle. Believe me, I have many of those days myself. I keep on searching for "good news" articles through the medical journals that show that they are making headway with not only refractory celiac sprue (me), but celiac in general and the complications that go along with it. Even my family doctor, who basically knew nothing about celiac before me, and openly admitted that in med school the only thing they are taught about celiac is to look for it in children with distended bellies, admitted that she has a hunch and a few years down the road she thinks there is going to be a real breakthrough and all the pieces of the puzzle will start to be put together.

We just have to hang in there until that happens! In fact, one of the things that keeps me going is the fact that I am contributing at least in a miniscule amount, to the "push" towards the medical establishment opening their eyes. Every little thing we do to "get this disease out there" is a step in that direction......

There are days though that I just sit on the toilet, in pain, weak from going so much, and wonder "When will this ever end?" or "Why do I even bother? What kind of quality of life is this?". Then I just take one look at my children, and the answer is there for me.....

Sending you many, many hugs.

Luv

Karen

[BettyL.]

Yes, I realize that my problems are not minor; but compare to others they are. Knowing this helps me cope in times of stress. I know thaty I might make it through another surgery; but after the last few days I am ready fro some releif. Right now I am afraid to put anything in my mouth because I get an up set stomach very easy. At my agre and with my medical history; I might have become a poor surgical risk. So now I wonder if my doctor will do the surgery, if yes, will I have to wait 2 to 3 months to have it. My hernia is not life threathening right now. (At least I don't think so). After the barium swallow, I was asked to come into the office. That should have alert me. I did ask if I would see my doctor or his PA. I was told his PA I was surprise when he walked into the room. His offoce girls did not know he was coming into the office. He hits a lot of the outlaying areas in the area. He didn't have my records and I couldn't remember why they kept me so long in 2005. He wanbted to check the hospital records. Next Wednesday I will know what he feels he can do for me. At least he is one of the better surgeons in the area and while he doesn't know much about celiac disease; he is willing to listen. Most are not. I add you to as a friend; we can help each other through this difficult time for both of us. Take care.

[imsohungry]

Again, thank you all for your support. I am feeling a little better. I made a yummy gluten-free pizza and gluten-free brownies...all from scratch! (well, I didn't milk the cow...but I did read the recipe)

And yep, I LOVE country music. Although I appreciate and like many songs from all genres.

I'm not that fond of rap; however, my 1 year old loves it. He turned the cable to a rap music station on the TV (he loves the remote); When the music started playing, my baby started dancing. I mean arms, legs, and head bobbing up and down! It was classic!

-Julie

[jerseyangel]

I'm really glad you're feeling better!

[ravenwoodglass]

Again, thank you all for your support. I am feeling a little better. I made a yummy gluten-free pizza and gluten-free brownies...all from scratch! (well, I didn't milk the cow...but I did read the recipe)

And yep, I LOVE country music. Although I appreciate and like many songs from all genres.

I'm not that fond of rap; however, my 1 year old loves it. He turned the cable to a rap music station on the TV (he loves the remote); When the music started playing, my baby started dancing. I mean arms, legs, and head bobbing up and down! It was classic!

-Julie

Hi Julie I am so glad you are feeling better.

I wish I could have been there to watch that dance. You should tape him if you can and play it on his 16th birthday for all his freinds.

I love country too and the old musical songs, like from Gigi and such. Where I grew up you had to use ear plugs and stick the records in Rolling Stones or Zepplin covers, otherwise you risked ridicule. ooops giving away my age here

I hope you soon have many more good feeling days than bad.

[Guest andie]

Hey everyone,

For anybody who reads my posts/replies, you all know I'm a fairly "upbeat" optimist.

But I just need to cry, vent, or something...truth is I'm scared.

Illness in my family and death at an early age (30's) is very common. Cancer affects nearly everyone in our family: My grandmother, grandfather, mother, great aunts, etc.

Autoimmune disorders are eating my family alive....literally.

I've now hit my early 30's and for some reason, I'm scared.

Unlike most in my family though, I've been hit with everything (except cancer). My family and I joke that it's all in the way "God shaped the egg." But honestly, I'm tired and sick and scared.

My diagnoses are as follows:

Refractory epilepsy

Lupus

Sjogrens

Celiac

Interstitial Cystitis

Esphogitis

Etc.

I am literally living in the body of an eighty year old at 31. My blood and body are checked constantly. I hurt myself during seizures, my muscles/joints throb from the lupus, and I sleep elevated so that I'll quit tasting my own stomach acid due to the reflux. I can't drive, cook, cross a street, or bathe alone due to my frequent seizures.

The medical bills are out of control (and we have good insurance). I take 32 pills everyday. I am supposed to take more, but I never filled the prescription for two of them (I just can't stand the thought of swallowing one more pill).

I have this silent, but very real, fear that I won't live to see my son grow up. I can't believe I just wrote that...but it's true.

I do everything the dr.'s tell me to do. I take my medicines, eat gluten-free, keep my appointments with them, sleep enough at night, etc. I have been poked, scanned, and even have a VNS (kind of like a brain pacemaker) implanted in me. I mean, I try so hard!

I developed an "episode" of optic neuritis my senior year of college in both eyes. I wore a patch over one eye just to take my final exams to graduate!

Please forgive my vent. I'm not usually like this. I know I'm blessed. I guess it's just been a tough week.

-Julie

To Julie and all who responded with support

What a lovely group! The world is so much richer with people like you in it.

I am a nurse in hicksville Ontario. Our local hospital is a regional centre and sees only the sickest of the sick. There are some very amazing people who go through there, much like yourselves.

The trials of a chronic illness are staggering. And the people so much stronger despite it.

Look to your sons/daughters. They are your future . Teach them compassion, patience and understanding. If not able to dance WITH them, let them dance FOR you. Bathe in their happiness and make it your own.

I stress to my patients that we must live one day at a time. Some good, some not so good. Without the bad who really can appreciate the good? How much more special is that dance of your child to you then to someone who is 'healthy'? Someone who may not even have noticed it!

Take heart Julie.

Good days are out there too.

Andie

[Fiddle-Faddle]

Sorry I didn't see this when you first posted, but here are

{{{{{HUGS}}}}}}

[imsohungry]

Thank you both for responding! Some days are definitely easier than others...which is true for everyone.

I'm fighting multiple battles with my health. Some days I win, and some I lose. But, such is life.

Because I am not a candidate for brain surgery, I just have to wait to see what new developments unfold from medical research. I am grateful, however, that there are people out there who are willing to devote their careers to finding help, relief, and even cures for all of our medical illnesses.

Blessings to everyone. -Julie

(P.S. That baby of mine is quite a character! We are currently debating about who is in charge of the household. I know it's the hubby and me...the baby thinks it's him. My life is like a drooling, pooping, fit-pitching soap opera. Stay tuned for tomorrow's adventure...).

[Guest andie]

Thank you both for responding! Some days are definitely easier than others...which is true for everyone.

I'm fighting multiple battles with my health. Some days I win, and some I lose. But, such is life.

Because I am not a candidate for brain surgery, I just have to wait to see what new developments unfold from medical research. I am grateful, however, that there are people out there who are willing to devote their careers to finding help, relief, and even cures for all of our medical illnesses.

Blessings to everyone. -Julie

(P.S. That baby of mine is quite a character! We are currently debating about who is in charge of the household. I know it's the hubby and me...the baby thinks it's him. My life is like a drooling, pooping, fit-pitching soap opera. Stay tuned for tomorrow's adventure...).

Julie

Try juggling 4! One 17, one 15, one 10 and one 7. All of whom think they're in charge.

From choices in music that breach the gap, to boyfriends, hickey's, safe sex, to Barbie dolls, Easter bunnies and Santa! Hubby just keeps his mouth closed! (rolleyes: i like that!)

4 females and 2 males in this house. Lots of underclothes in the morning getting ready for school. Son is 10. A woman could walk past him on the street wearing a bra and thong and he'd just comment on the brand!

What a loonie bin!

Sounds like a good day there! More to come!

Andie

Sounds like a 'good' day there.

[num1habsfan]

*Hugs for you* I know how hard it can be for sure. I don't think my situation is as tough as yours, but I agree with others that are you strong for staying together this long. If you've read my posts in the last 1 1/2 yrs you'd know i've been going through way too much, while trying to get my education at the same time.

And to comment on something you said, country music is the best therapy. Music heals me when nothing else does. It may not help me physically or emotionally, but it sure works mentally. If you're interested, I can give you a list of what songs help me the most.

We're always here for you on this board, its the best website to me. I know because of how great people usually have been to me here.

~ Lisa ~