Oct
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Submitted by twehe on 15 October 2006 - 2:24am
My name is Tara and I am from Ohio. I am 29 years old. I have a daughter that is 8. Everything she knows is mommy being sick.
I have Lupus and Loin Pain Hematuria Syndrome. It struck me in 2000. I had several kidney stones and had to have surgery to remove them. Ever since I have had dibilitating pain. I went to many urologist and they all told me the pain was in my head. went on antidepressants and began thinking maybe it was me! I met a wonderful urologist who said I was the first patient he had diagnosed with LPHS. That's when all my medications started being prescribed. The pain was not being taken care of. I could barely get out of bed. I was vomitting every other day. I had lost 30 pounds in 4 weeks. I slept 20 hours out of everyday. How could I take care of my daughter? My pain was not my first worry but my daughter seeing me that way and worrying what kind of chances she will have in getting these diseases. That thought just killed me. My depression sunk even lower and I was going through a divorce. I noticed I was a totally different person and hated it.
I look back now and I am so glad I made journal enteries. I often thought how much easier it would be if I just died. Now that I am on a road to becoming myself again, I can't believe what I wanted to do to myself.
I have recently had a pain pump implanted. I am having alot of success with the procedure. However it is causing new pains. My right leg is completely numb and I am having awful pain that meds are not helping. They think that my pump is sitting on a nerve. The only way to fix that is to have the surgery done again, moved and have the possibility of it happening on the other side.
I would recommend this to anyone with chronic pain if you are a canidate for it. It really has given me a piece of my life back. I no longer feel like I am dying. I am able to take my child outside to play and out shopping. I am still living with pain but it is much tolerable. My Lupus still is something I am dealing with daily. But the rare kidney disease is so much better. I am lucky that I have wonderful doctors that have supported me. I was a guinea pig in there office for the pain pump. They knew of how bad the pain had effected me and decided this was my only hope. God bless smart doctors.
If anyone would like information, I would be glad to answer your questions the best I can. Thanks for reading my story. Hopefully I will chat with those of you who share similar situation. I find it is a stress reliever to know there are people out there that are in my same boat. My husband doesn't understand so it has been a long, hard road alone.
Recent comments
- Thank you for sharing your
3 days 15 hours ago - I hear you
1 week 1 day ago - This has hit me too
1 week 1 day ago - Chronic Pain Management
2 weeks 5 days ago - How did you treat the pain?
4 weeks 5 days ago - Epidural steroid injections
4 weeks 5 days ago - I was diagnosed with LPHS at
5 weeks 2 days ago - I am 18, I have had LPHS for
5 weeks 2 days ago - Very no bad post
6 weeks 2 days ago - Very no bad post
6 weeks 2 days ago
3 comments
Tara, I have a morphine intrathecal pump too and I was wondering what type you have as I am on 10mgs a day and that lasts about 5 weeks.On 5mgs an hour every day you must be using 120mgs a day so you must have a huge reservoir on your pump. What type of pump is it because I would love to not have to go back so frequently to have mine filled.
Thanks pennyanne
Hello.
The pump is great. You don't have to worry about having the high's and the lows of the medications. The only time I felt dizzy was when I got a new dose of medication. It was only for an hour or two. It is implanted in your abdomen. When you get a new dose they put a little pager looking device on top of your pump and the doctor has a little hand held computer and types in what dose of medication you need. I go once a week to get a new dose since they start you off really low. I am at 5 mg of morphine per hour. If I have alot of pai, I can go to the office and get a bolus or an extra dose of medication for that hour. That is when I had a little dizziness. The problems that I have are the pump is sitting on a nerve and it is causing me to have numbness down the side of my leg. I do not take any other pain medications. They do not like to mix meds because it is dangerous. It was hard to deal with at first. My body was craving other narcotics but I soon got over that feeling. I take muscle relaxers still and other meds but no other pain meds as they are not needed. When I have alot of pain or a flare up I will go to the emergency room. I will get IV'S and then they give me a few days worth of pain meds to help get through. My pain doctor is good about increasing my dosage. It really has been a blessing. The one thing that I don't like is I am about 130lbs and the pump shows through my skin. It is about the size of a hockey puck. Refilling the pump is easy. You go to the doctors office and the pull out a liile measuring device to see where the port is located. Then they extract all the medication that is left in the pump and replace it with new through a syringe. You can't feel the needle too much. I was worried about that appointment but it was a breeze. It depends on how much medication your pump is using but I am at 5 and I will need mine replace about every 3 months. I would do it all over again if I had to. The pump for me has been great. I was worried at first because I started off at 0.5. It did not start working until 4mg. Hopefully I answered your questions. if you have any more please ask. I can't say enough good things about it.
Tara
Dear Tara, I wanted to know how it feels to have the pump, is it like taking other medications, do you feel light headed and dizzy or is it as if you taking nothing at all. How often to you have to get it refilled? Do you have to go the doctors office to do it? And from where to they refill it? You mentioned that pump does not treat all the pain. What other medications do you need to take for that.
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