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In the Hospital

JenD
  • By JenD
  • Posted June 15, 2008 at 5:42 pm · 21 replies
  • Shared with the public
1 Recommendation

Hi all,

I've been hospitalized since Tuesday June 10th. I had a severe dystonic storm on Tuesday night and have been moved to IU University Hospital because my movement disorder specialist is here.

My gastroparesis has flared up quite a bit because when I was out of it they were not giving me my domperidone and they were not giving me scheduled zofran. I am quite frustrated to say the least.

My son's birthday is today and I was to host. My friends and family took care of everything and he had a good day but I feel so bad that I am not there.

Thanks for listening. I'm feeling sad and alone as I know many of you are too. It will get better.

Take care,
Jen

Explore topics in this journal entry and replies:

Surgery Dystonia Seizures Gastroparesis

21 replies

SlowTummy

Hi Jen,
I'm new to this and was only "officially" dx with gastroparesis in January 2008. Just want to let you know you are not alone and it is ok to have all the feelings you are having right now! I must really suck to have missed your son B-day! That is what makes me so angry about chronic illness, it does not kill you right away, but it slowly takes away everything you enjoy in life! It affects everyone around you & there is nothing you can do about it! I'm not trying to make you anymore upset about things, just letting you know others share the emotional entanglement this can do to our lives! You are in my thoughts & prayers!
Take care of yourself,
SlowTummy

chewy1

Jen,
I'm so sorry that you are back in the hospital. It seems like lately several people have had flares or other problems that have landed them in the hospital too.
I didn't know what a dystonic storm was so I had to look it up. It sounds really painful. It's one of those things that I pray that I never have to experience it first hand.
I hate that you have gone through all this and then had to miss your son's birthday on top of it all. But, you are giving him a great gift by getting medical help that you need, so you can be around to share other birthdays. O.K...I know I'm sounding like a hallmark card!
I really hope that you start getting the medicine you need on time so you can get the nausea back under control.
Keep us posted on things.
Judy

JenD

Thanks so much Judy and SlowTummy. It has been really hard to be away from my son. Hopfully things will improve soon. The gastroparesis is doing a little better since I'm finally getting my meds. My hubby is going to bring my son up tomorrow to open his present from me.

The dystonia goes up and down but right now is not too bad.
Here is some info from the Dystonia Medical Research Foundation regarding dystonic storm:

What is a dystonic storm?
Rarely, patients with dystonic symptoms develop increasingly frequent and intense episodes of severe generalized dystonia called status dystonicus. A single episode of this severe dystonia may be referred to as a “dystonic storm” or “dystonic attack.”

Although the exact numbers are not known, anecdotal accounts suggest that relatively mild to moderate dystonic storms are a fairly regular experience for some individuals with generalized dystonia, especially secondary dystonias. Most cases of severe status dystonicus occur in persons who have generalized dystonia that is complicated by other conditions such as metabolic disease, secondary effects of a traumatic injury, or additional neurological conditions.

If a person’s swallowing or breathing is affected by a dystonic storm, he/she may require emergency medical attention. In very severe cases, individuals may be admitted to an intensive care unit setting where they may be sedated with medication or need temporary mechanical ventilation to support breathing.

Although the exact origins of status dystonicus are not known, some documented cases appear to be triggered by an abrupt change in medication or severe infections. Medications and botulinum toxin may be used to reduce or alleviate symptoms of a severe dystonic storm. Individuals experiencing a relatively mild or moderate dystonic storm may have a specific medication prescribed by a physician to take at the onset of the attack, may get some relief from a “sensory trick,” or may simply wait for the symptoms to subside.

Alisha

I am sorry to hear that you are back in the hospital I know the feeling and fustration that you are eperiencing. There for awhile I felt like I was being put back into the hospital every other month because of being dehydrated and malnurished but thanks to the TPN I have been able to feel healthy again. Well it sounds like you have a very good support system with your husband being by your side as much as possible. I am getting married in Oct and so happy to find that speacial someone who will be at my side during the rest of my journey in life dealing with this long term condition. I hope to some day be a mom but am worried how it will all play out . In the mean time I lay my life in Gods hands and go along for the ride hoping to touch other peoples lives letting them know that he has sure made a bg difference in my life He is my stregthen I depend on every day. I hope this has brought you some encouragement while you await the next few days before you are able to get back on you feet. Keep your head up high and things will get better. Think of this time as being a time to make you even stronger than before.

stekcsf

JEN
praying for you! Don't let "mommy guilt" get to ya! You are a great strong person, always there supporting us and your family. I always figure when i'm gone it makes everyone appreciate me more!! I t does!

Tricia

sandyb

JEN
I DON'T HAVE CHILDREN. BUT I DO HAVE DYSTONIA SO I KNOW ALL ABOUT A STORM. PLEASE DON'T FEEL BAD ABOUT MISSSING YOUR CHILDS BIRTHDAY. YOU ARE NOT A BAD PERSON. HAVE YOU CONSIDERED HAVING THE DEEP BRAIN STIMULATION SURGERY? IF YOU NEED TO TALK TO SOMEONE ABOUT THIS I AM YOUR PERSON. IF YOU WANT TO YOU CAN EMAIL ME PRIVATELY. I WILL BE HAPPY TO GIVE YOU MY EMAIL ADDRESS.
HANG IN THERE JUST WHEN YOU THINK THINGS ARE NOT GOING TO GET BETTER THEY DO.
SANDYB

Zacolton

I'm very sorry to hear you're back in the hospital. I experienced a relapse and hospitalization a few months ago and it was unbearable as I had had a lot planned at the time too. Unfortunately with our issues we just have to accept that putting life on hold has to happen sometimes. At the very least, it seems you have the internet. You have no idea what I would have done for that!

LauraB

Hi Jen:

I am so sorry. I hope you have some comfort knowing we and "I" are here for you.

You are in my thoughts and prayers

Laura

Kerri-ann

I too was just in for cipo, gastroparesis missed alot but am trying to recuperate. You are not alone we are here for you. Get better.
kerri

Adance

I just wanted you to know that I am praying for you and wishing you a speedy recovery.

JenD

Thank you to everyone who replied. I am home and doing much better. The dystonic attacks have waned and I am doing great for the time being just still a bit tired. Thanks for the support. It does wonders at keeping me going and keeping me sane when things are difficult.
Love and Peace,
Jen

Char

Jen,
I'm so glad you have been able to do home. I'm sure your son is just happy to have you doing a little better and home with him.
You're in my prayers,
Char

itzykitty

Jen:
Never give up as you do not know when you may give someone else an inspiration. I know that dystonia is very aggravating and painful.. I think I may have dystonia too. One neurologist kept telling me I had a seizure disorder for almost 7 months. I finally went to a different neurologist when I was hospitalized about three weeks ago. When I was there they did an EEG, and different physician did see any seizures. Then I was told it could be psychological. Well, we I came out of the hospital, I found a totally new neurologist, and he says I may have dystonia. I will know the results of neuro-muscular tests tomorrow. I just want to tell you please dont feel like you have any control over this situation. You cannot do what your body will not let you do. I hope you are feeling better now.
Itzykitty

JeniMac

I am glad you are home & doing better. Being in the hospital is a desert experience, feeling alone & also like a burden, at least I did. I always felt bad that my family felt they had to take 'shifts' to be there, I know it was hard on all them as well, though I was thankful for their presence. it sounds like you have a wonderful husband and son, which somehow, makes it all seem worth it to go through.
I hope you are continuing to improve & enjoy time at home. Sending lots of prayers your way.

Jen

MarieTwinTubes

JenD, hang in ther girl. Lots of people care about you. Blessing to you and your family. Marie

JenD

Thanks for the thoughts everyone. Just to clarify, this hospitalization was a year ago (in 2008) and I've been doing fairly well since. However, I will be going in for surgery next week on Tuesday and I'm pretty scared. I will make a new journal entry about it.

KateG

I hate when hospitals mess up your medication routines. It's happened to me a lot. I don't really understand the terminology you use regarding your physical condition but I know that being in the hospital is a drag. Unless you need the rest.
I wish you the best.
Kate.

proudmom2x

I will be praying that it gets better.

mphotographer

Hi Jen-
I am sorry to hear that you have to have surgery tomorrow. Know that I am thinking of you and sending healing thoughts your way. Take good care-I am glad you have a supportive family! Remember to be gentle with yourself, as far as trying to be a good mom, wife, etc. Your first priority is to get to feeling better! Mphotographer

acaber

Dear Jen,
Wishing you an uncomplicated and speedy recovery and that the surgery should accomplish what you want it to.
Sending you prayers and heartfelt wishes,
Reva

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