Difficulty staying optimistic...

• By chewy1
• Posted June 10, 2008 at 11:20 am

Kate,
I'm sorry things have you "down" right now. I think all of us can relate to the feelings you have expressed.
I know that even after 8 years of this I still have times where I feel like things will never get better. Thankfully, I usually am able to pull myself out of it. I think your writing about it is a great idea. I know that if I take the time to write it all out, even if I don't send it, I seem to feel a release of some of the stress.
I'm sorry that you are having to deal with the extra stress between you and your sister too. When I first got sick I was living in a house that belonged to my brother and his wife. I was able to keep up on the rent for awhile but then it finally got to the point that I just didn't have the money. My brother was o.k. with it and told me not to worry. My sister-in-law wouldn't say much to me directly but would make comments to other people that would make me feel like she thought I was taking advantage of them. Things ended up working out for me. It wasn't the way I would have wanted it to happen because it worked out due to the fact my grandmother passed away. She owned a mobile home that sits in my parents yard, so when she died, my parents gave me her house to live in rent free.
The Social Security will take awhile and there isn't really anything you can do personally to speed it up. I understand the concern that you will go through the whole process and still be denied. I felt the same way, up until the hearing. My lawyer assured me that he was 100% positive I would win and that he never tells clients that...but he was so confident with all the problems that there was no way not to win. I felt much better after the hearing when I heard the occupational expert say that there were no jobs that people with our problems can do. Plus, the hearing only lasted about 20 minutes and when we came out the lawyer told me that he had never had one go that fast before and that easy. And...I have a lot of medical problems but compared to so many others I'm not that bad!
Do you have migraines? You mentioned the headaches and thinking that they weren't exactly like your usual sinus headaches...so I just wondered if maybe you are having migraines.
About the side effects of the domperidone... I wasn't on it very long so didnt' develop the problem with the prolactin levels but I did begin having muscle spasms early on. I ended up having to stop it and the spasms did go away.
I really wish I knew something to say that would lift your spirits but I know that sometimes all we can do is express how we feel and pray that things get better. If it helps at all, try to remember that everyone on here relates to how you feel and have gone through the same or similiar emotions. So, lean on us, share your concerns and feelings and know that we are here for you.
Take care,
Judy

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• By Whisperingdays
• Posted June 10, 2008 at 11:04 pm

Dear Kate,

First I want to just give you a big warm heart Hug. I feel every emotion that you are going through right now. I too wish that I could do something to help your spirit and take your pain away.

People just don't understand the grief and insecurities that we go through with our GP. Never knowing what the day will bring and if that bite of food you dare to put in your mouth will make your day a living hell. I fear it everyday. I constantly like you feel guilty for a disease that I had no control over. And I tell myself everyday that I have to stop feeling that way.

I know getting turned down for disability was a real blow for you but I know you will get it. I ask myself why everyday. Why can't I live a normal life anymore. why can't I go to dinner with friends and enjoy myself. Life isn't fair and I keep saying to myself there must be a purpose for why god has given me GP in the first place. I just need to find the strength to try and get the answer.

If your boyfriend loves you and is willing to be with you through everything you are going through. Then I say except it and hold onto it to help get you thru this .Friends and family can be a powerful healing tool if you let it be. Everything you described about your
pain and hair falling out headaches, etc.. All are all part of the GP. My GI doctor tells me.

I am still in the hospital I have been in a week now, with no signs of being told I can go home yet. I have cried almost everyday, when I get sick and am throwing up in the plastic pan they give me. I go from Marinol to phentergan to Zofran, Xanax to pain meds. The only thing that is keeping me somewhat sane is that the drugs are keeping me numb.

The Gastric Emptying test I had I think I said in another post is much worse then it was a few months ago. And I got what i felt was bad new from a specialist today that my doctor called in .

First let me tell you that they were wanting to put me on the Domperidone cause this doctor had some special permit to be able to write me a RX to get it from a company in the USA. Then he saw the red band on my arm and said what are you allergic too. I told him I was allergic to Reglan. He gave me this defeat look and said. I am so sorry but we can't put you on Domperidone as it is a drug that is based off of Reglan. I was surprised as I didn't know that and I am so thankful that I never got it as it would of probably killed me the doctor said . So my point to this is. That is you take the side effects of what Reglan can do to people and add that with the other ingredients to the Domperidone that could explain alot of the problems you are having with the drug. So I hope that gives you some answers about that. Even the Mosapride isn't helpin me with the GP it is helping me with my swallowing so they want me to continue taking it.

My doctor knows several doctors that specialize in the GP from Shanes to Moffit and Mayo. He told me today that he has talked to them and they all seem to think that I have tried and failed everything they have given me I have to have one more test done the one that Judy had for the motility for swallowing.(sorry I kwill spell it wrong it is Monometry (sp)or something like that . Where they stick the tube down your throat.
They feel I need to have the gastric pacemaker. And I just don't know what to do. My insurance company would only approve the TPN for one month. So I don't know if this is something you just have to keep getting approved.

You are constantly in my thoughts and prayers, I am hoping for something good to happen for you with all of this. We all need each other here or we would never make it. Please never hold things in we are all here to help you get though this as best we can. Hang in there Kate, never doubt that you are not special!
Sometimes when we hit rock bottom miracles can happen.

Big hugs,

Whispper

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• By Kate1
• Posted June 11, 2008 at 11:16 am

Judy and Whispper,

Thank you so much for replying. Things are really rough (and I'm starting to feel much worse since stopping the domperidone and I'm afraid of what that will mean), but I'm trying to keep myself together. I can't stand how needy I am right now with my family and my boyfriend (and all my doctors, too!), but I keep trying to accept that that's just the way it is right now, and hopefully I will get stronger. I also miss my other friends- I have been so antisocial since I got sicker this winter. It's hard to see friends and put on a happy face (which I often feel like I have to do). I don't want to complain too much, and I know I don't look that sick, so I don't know what people think about my situation. Most people can't tell that my hair is falling out, and at this point the muscle spasms aren't that noticeable to others. So, mostly I just look like myself, just thinner sometimes (but, I often get complimented for that, which is pretty disturbing).

Anyway, I appreciate your support. Whispper- how are you doing with the picc line? It sounds like things have been awful for you in the hospital. I really hope that they can figure out a way to help you get some relief. Maybe it won't be too hard getting the pacer approved since they've tried so many other things already... What kind of insurance do you have? I really wish you were able to take domperidone. Despite the side effects that I have had, it's been a wonderful medication as far as treating the GP. But, I'm so glad the doctor realized your allergy before prescribing it to you. It's scary what can happen with all these medications!

Judy- thanks for your continued support regarding the SS application (and everything else!). I am trying to stay optimistic and not feel too guilty about going this route instead of forcing myself back to work when I really don't think I can do it. I was wondering (and you may have already mentioned this in other posts), but what do you currently take for your GP? I know you had to come off of domperidone. Have you found something that has worked for you, at least a little?

Thanks again for your encouraging words. Whispper- I hope you are able to continue to keep us posted from the hospital. Hang in there...

Kate

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• By chewy1
• Posted June 11, 2008 at 7:06 pm

Kate,
At this point I'm not really on any medication that is geared just to GP. I have prescriptions that I alternate between of Zofran, Phenergan and Marinol to help with the nausea/vomiting. I am on Prozac and amtriptylene to help with the anxiety/depression. I take Lyrica for pain management every day along with Vicodin or Ultram for those really bad days. I have other medications that I take when needed for various other symptoms.
The GI doctor at Mayo, told me that since I wasn't able to handle the few common GP meds like domperidone, or reglan that the best we can do at this point is just to treat the symptoms.BUT...He also told me at my last appt a couple of weeks ago that there is a new medicine that will hopefully be given FDA approval soon that he has high hopes for helping with all these symptoms. So, it is at least a glimmer of hope!
I completely understand what you are feeling about missing your friends and social life before GP. I have found out a lot about people after dealing with all this. There are people who I thought would be there for me through anything, that have just distanced themselves from me. I can understand that it's not fun to be around someone who feels cruddy all the time. I try not to talk about how I'm feeling to them but sometimes I need to just be able to vent. A few act mad when i don't feel like going shopping or out to eat. They take it as a personal thing.
But, I have also learned that other people who I didn't expect have been majorly supportive. They call or e-mail on a regular basis, they will ask me if I'm up to going out and if not they will be so understanding and if I'm up to company they will come over instead. They are really interested in how I'm feeling and will just let me vent...then when I'm through we will move on to other things.
It will still upset me when I think about one particular friend who I thought was probably the most loyal friend, had pretty much dumped me. She is big into the shopping and eating out stuff and when I started having to turn her down she quit calling or coming around.
I think the reality of it hit me on this last trip to Mayo. I got messages from several people on here who knew when I was going and actually would write and ask how things were going and all that...I had been there several days when this friend called (first time in a while)..she didn't even have a clue that I was in Minnesota. I told my mom that really spoke volumes, that people that I have never actually met are more supportive and more involved in my life than she is now.
I also relate to the "guilt" feeling about not working. I haven't worked since Aug. 2001. But, I still have those times where I wonder if I'm really not able to work or if I'm just using it as an excuse. However, reality usually hits me...sometimes the same day or maybe a week later when I'm dehydrated from vomiting so much and so weak I can't walk across the room.
Like you if someone just sees me they probably think "she's doesn't look sick". My weight is o.k. and I will try to act perky when I'm around people. Of course the huge dark circles and sunken eyes are a pretty good indication that something isn't right. It has been hard to just quit worrying about what they think but I just have to tell myself that the people who really count do know I'm sick and can't work.
The fact is I do have a few days in a row that I feel good enough I could work...but then I may have a month where I do good to get out of bed. But, I just don't think many employers would be willing to hire someone to work that type of a schedule.
I know I can tell you not to feel guilty or bad about not being able to work...but you will anyway. Just try to remember when you start feeling that way that you aren't the only one. Think about how many days in the month you would had to have missed work because you would be too sick to go in... then think about your particular job...would you be able to successfully and efficiently perform your job duties with so many sick days!
NEVER feel bad about telling us how you are feeling physically or emotionally. I think sharing helps the person writing but is also great for the readers because you really do see that what you are feeling isn't that unusual. I think since I joined this group in November, I have learned so much in terms of GP, but also that there are so many good people who geniunely care and support us. It makes me tingle sometimes when I reading the responses to posts...everyone is so encouraging.
I told a friend the other day that finding this site was one of the best things I ever did...I found out that I'm not crazy and that I can become such good friends with people I have never met.
O.K. I will shut up for now. I know I can get carried away with my responses but when I read one that really hits home with me I just can't stop...I just want the person to know that what they are feeling is common!
I'll talk to you later,
Judy

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• By msmac
• Posted June 11, 2008 at 10:19 pm

Kate, having some place that you feel safe venting from time to time is important. First, keep going on your appeal. It will be worth it. Next, your boyfriend understands and knows what you are dealing with and has obviously made the choice of being with you. It is his choice, you should accept it and love him all the more for it. Out of all the woman out there, he has chosen you at this time in his life to be with. Hang on and find something daily to laugh at or smile at, we all need to do that. No matter how many diseases or chronic illnesses any of us have, it is important to try to learn that on most days we need to run our health and not let our health run us. I don't mean to sound hard, but it is something I have had to learn. I too deal with depression from time to time and that seems to come with having a chronic illness. With proper medication, you might be able to deal with it better.

As for your sister, I am so sorry that there is the tension. Often times family members can't be expected to be as we would want them. It is sad when that happens and especially hurts when it is a family member.

I will be praying and believing for your comfort, appeal to go through, place to live and your family dynamics. :)

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• By caletham28
• Posted June 12, 2008 at 4:12 am

I am new to this site but I am a newbie on the domperidone and so far no side effects except I have an increase in spasms I though was due to other problems. After reading all this it may be from the domperidone. It is working for me but now that things are moving I can't get the other end to work. You are all fighters here on this site as am I. I can't believe how many other people deal with all this digestive stuff too. I thought I was alone. I hope things smooth out for you and my advice one day at a time. You are a survivor and one tough cookie!!!! Carrie

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• By deb1
• Posted June 12, 2008 at 8:59 am

Kate: You are not alone. I know you are sick of being sick-like the rest of us. I say this is a "satan" disease. For me it's gotten to the point that I would rather die than spend one more day on this earth like this. Yesterday-I just cried thinking this is pretty bad when I would rather not live and be with my children than continue on like this. I cannot care for them and I feel terrible all the time. Anyway enough of that-I'm just curious for you and anyone else how many have had their gallbladders removed? Has anyone had pancreatitis? Before I go-I'd just like to know what caused this dreadful thing in my life. It's gotten so bad for me that I can really even tolerate sips of liquids (I do not vomit but have severe bloating and naseau).

Judy: would the drug be the new one from Tranzyme? I pray ever day for some cure something for all of us.

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• By Kate1
• Posted June 12, 2008 at 10:00 am

Hi, Deb. I'm sorry you are feeling so hopeless... I can relate to the feeling, and I hope you are able to hang in there and find reasons to keep fighting. New medications are always on the horizon and who knows what new information will be discovered. I know it's hard to hang onto these types of possibilities, but it's important to try. Have you found anything that helps you?

I also wanted to mention, in response to your question, that I have a history of pancreatitis. I have not had gallbladder surgery, or any gallbladder issues. After years of repeated bouts of what was initially called "idiopathic pancreatitis", it was finally discovered that I had a form of Cystic Fibrosis that was the underlying cause of the pancreatitis (as well as many other medical issues I had been dealing with since childhood). I have wondered off and on if the recurrent pancreatitis has played a role in the onset of the GP. Who knows. I have spent loads of time trying to figure out what brought this on... Have you had pancreatitis as well?

I hope you are able to find support here on this site. I think you have my email, so please feel free to write if you'd like to talk. Hang in there (I'm trying to as well!).

Kate

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