Hey its the wife Kristine! Well I am sitting here missing yet another important moment in my kids life. Our daughter is getting her purple belt! I am stuck at home feeling horrible as I always do. There are no more good days. Life has sucked them all away from me.

Thanks to Sjogrens, POTS, Gastroparesis, Anxiety, IC, depression and multiple other shit, to much to list! Ive delt with to many days, weeks, months, years of being sick. Now everytime I stand up I almost pass out (yea gotta love when you almost pass out in front of your 6 and 8 year old) and constantly fevering. Im not even able to feed thru my feeding tube for a week now. The passing out and fevering is nothing new but everything at once? Really? How much can one person seriously take? I think my last button is about to be pushed. Sorry for the rant! But I know some, especially those with children can relate! Im 33 and just ordered a shower chair, I feel so lucky!

25 Answers

shirlyextralarge
Answered 2 years ago    reply

so sorry, I can totally relate. Doing my best but much of the time I feel I'm forced to sit on the sidelines of my own life.


rondeausanda
Answered 2 years ago    reply

I have a shower chair. I have had it for years. There is no shame in needing one or help. I am sorry you are feeling this way. Most of us have our ups and downs. I also have a 6 and an 8 year old It can be tough but you are stronger than you think. You will see better days. You may never feel better but you will find more ways to cope. All you can do is the best you can and give your self a break and forgive your self.

offended
Answered 2 years ago    reply

Those words you may never feel better but you will find more ways to cope, is good. Ty

rondeausanda
Answered 2 years ago    reply

I have had MS for 23 years. I have SLE Lupus and Sicca. I am happier than I have ever been in my life and strangely my life sucks. I am 42 and 10 years ago I saw no point in living or my life. I have some how learned to see the blessings instead of the curses. I hope you not only find peace but I hope you feel better

offended
Answered 2 years ago    reply

Diagnosed at 26, Im 33. I am missing my babies grow up right in front of me. Im on a feeding tube and can still barely feed. Im mostly couch bound or bed bound. I can barely get around anymore. Im thinking about my funeral and everything in my childrens life im going to miss out on. Just 7 years ago I had nothing wrong, now im uncapable to do just about anything. I have tried so hard to find the positive. But at the rate im declining, I dont even believe I will make it that long. Im still trying to find that positive.

rondeausanda
Answered 2 years ago    reply

Let yourself feel what you need to feel. When I had chemo and a new med I felt better than I had in 10 years. That passed and I was diagnosed with lupus. Feeling pretty hopeless again. I had to go threw the stages of grief but I am doing better on the Rituxan. The meds I had available 23 years ago for my MS were horrible. Things have changed but mostly because of the advancement in treatments. You do not have to be positive if you are hurting. You have to go threw what you have to but every day is a new day and maybe... Hopefully a better one will come along.

offended
Answered 2 years ago    reply

Ty


aquatic
Answered 2 years ago

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offended
Answered 2 years ago

This comment is awaiting moderation

aquatic
Answered 2 years ago    reply

Brad tinoco your words went straight to my heart and to be honest tears even wet tears running down my face. I wish I could help you. I hope you have good doctors Kristine.

offended
Answered 2 years ago    reply

I wish I did. Thats one of the biggest problems. I live in a town atleast an hour away from good specialists. I dont even have a primary doc close by that will take me on. They wanna know what ins I have and whats wrong, its a for sure no. I got one waiting to call me back to see if they will accept me. I guess they pick and choose now. I think I might start crying and begging for them to accept me. Im to sick to even make it out of town anymore without a driver. Our hospital just closed and will now eventually??? be an urgent care. I keep saying if I stay in this town I will die alot sooner then I have to


barto
Answered 2 years ago    reply

Why do you have a feeding tube


rondeausanda
Answered 2 years ago    reply

probably gastroparisis

barto
Answered 2 years ago    reply

is it reversible...I have esopageal spasms n may need this sometime

rondeausanda
Answered 2 years ago    reply

gastroparisis is not the same thing

barto
Answered 2 years ago    reply

No but can lead to it.

rondeausanda
Answered 2 years ago    reply

paralysis in the stomach or slow gastric emptying? they can reverse it with gastric bypass or a gastric pacemaker

barto
Answered 2 years ago    reply

Yes schleroderma and srogrens

rondeausanda
Answered 2 years ago    reply

so a surgery like a bypass would not help you?

barto
Answered 2 years ago    reply

Already have nerve and muscle damage of the esophagus. Difficult to swallow good or water.

rondeausanda
Answered 2 years ago    reply

sorry this is in your future

barto
Answered 2 years ago    reply

Too soon...as far as damage.


kuhl.j
Answered 2 years ago    reply

Dearest Kristine, my heart goes out to you! I think this disease is most devastating when it attacks those of you who are young and have kudos! Please know that my thoughts and prayers are with you and your family! I can not imagine how you feel but can empathize with the over powering feelings sjogren's syndrome and the other syndrome you are battling can bring on! May you find the inner strength you need to continue your fight and remember to be gentle with yourself! None of us did anything to deserve this illness and sure did not ask for it! Bless you sweetie, hoping for better days very soon!

offended
Answered 2 years ago    reply

Thank you so much!


dudek_36
Answered 2 years ago    reply

Here's hoping you will find relief and know that you are not alone.


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