View Full Version : Been sick ready for my eternal home but God isn't listening to me!
03-16-2009, 03:43 PM
Hi there sorry I haven't been on been sick really really sick lately. I ended up with boils all over the front of my skin. Then I got sick started up chucking blood had to have an upper endoscope done found that my stomach and small intestine has ulcers from another bacterial infection and a valve that goes from my stomach to the small intestine isn't working right so I have bile where there shouldn't be bile. Sorry if this is grafic and gross but this is what I have been dealing with for weeks now. I can't seem to get the medical field to help me find out why this is happening or whats causing this other than my immune system has gone haywire. DUH!
Like the title says I have been ready to give up my pain and want to go to my erternal home where there is promises of no more pain, no more tears. Today is no better than yesterday, I ate solid food my stomach hurts like crap. I have a rash on my arms that has been there since Nov 08 but can't get anyone to listen tooo me. My pastor and elders have prayed over me and I know I am a long way from going "home". I am just tired of the fight.
03-16-2009, 04:28 PM
Oh you poor thing.Oh i wish i could take that pain away and make you feel better right now.Oh, please dont give up.I know it must feel that way now.....but it has to get better soon. I just hope you can get someone to help you find out what the problem is and treat you properly. I am thinking of you and sending you gentle hugs. We are all here, so when ever you feel well enough please come here, just even for some kind words.Wish i could send you something better than a hug, but thats all i have. You keep strong and know we are thinking of you.
lots of love
and lots of wishes of you feeling better soon
03-16-2009, 04:36 PM
Oh Red Hair Angel.....I am so, so sorry for your horrible suffering. I have been right where you are so many times...just so sick of the tremendous pain and all the awfulness that goes with this rotten disease....I have begged God to take it all away and let me have relief...and then have cried because He sees fit to leave me here on Earth to suffer some more. Sometimes we just don't have another single drop of energy to fight the fight anymore...we feel weak and tired. So tired that we could sleep forever. It is so hard to understand why we must suffer and experience what we go through...unfortunately, God sees the big picture and we do not get to. At least not during our time here.
But He does have a purpose for it...He does have a plan that we must trust. He does not abandon us, though it feels like it sometimes. He gives us a promise that we are never, ever alone and that when we reach the point of utter despair, He will carry us in His arms.
Our lives weave a path that, many times, do not have meaning to us at the moment....but as we travel that path and endure and grow and deepen our relationship with others and with Him, He brings people that cross our path. People that help us and people that we can help. There is much to be learned from what we endure during our travels on the path...things that we learn about ourself....like what kind of person you choose to be with your time here on Earth...
I wish that no one had to suffer, especially you. I wish that I could take some of your despair for you...It's a helpless feeling to know that someone has reached that point and wants it to be over. But please don't give up. Please endure this one day and try to have hope for tomorrow. And please know that my heart aches for you, though I do not know you, and that I will be praying for you earnestly.
I'm sending you gentle, caring, HUGS and peaceful thoughts to help you find the desire to carry on.
I will be thinking of you, Redhairangel....and asking God to take away your pain and help you and your doctors find answers.
03-16-2009, 06:34 PM
Dear dear Sister,
So sorry you are suffering, it seems like more than you can bear. It is hard to bear just knowing what you are going through, very heartbreaking. One time I cried out to our Dad, "why did you create me to suffer? What was the point because I'm not seeing the point!" Sometimes we just have to vent, He understands. The journey to the other side can be misery incarnate. Some days all I can pray is "Jesus help me."
Jesus please ease our sisters suffering. Lord her body is broken and her heart is yearning for home. Give her the strength to bear this out. Take this heavy burden from her Lord we pray. Father please guide her doctors, place your hand on all of her medical needs that they will find the right answers and the right medicine to heal her stomach and intestines. Touch her Lord according to Your will.
Lift her up sweet Jesus, protect her. Surround her with your angels, and loyal friends who will pray and comfort her. Bless her with that peace only You can give, fill her until she is overflowing with your true Spirit. We yearn for the City of God and the Holy Light that fills the temple. Hold us tight until we meet You there. Thank you Lord.
Love in Christ,
03-16-2009, 06:37 PM
Hi Red Hair Angel,
I am going to echo what Rastagirl said. God knows the path; unfortunately we don't. Please do not give up. I am praying for you and I hope your pain eases soon. Push the doctors for answers-call, call and call. Do you have a family member who can help you out with getting a second opinion?
Sending you gentle hugs and prayers.
03-17-2009, 05:47 AM
It is very sad to hear that you are suffering so. Too many people in so much pain.
IMHO it's ok to feel as you do. Hoping the day ends must bring you some relief from it all.
Your faith will comfort you but science will save you. Fight or have a loved one fight for you to receive proper medical treatment. make yourself heard.
I hope you have better days ahead.
sick n tired
03-17-2009, 08:13 AM
You have been greatly ill...It reminds me of Job. He had all those boils on his body..hmm I wonder if he was striken with Lupus or another autoimmune?
I do understand wanting to give up the fight...I have been recently having those thoughts. I am praying some comfort for you...like a remission...the only bright side to this is that you are a Christian and have the Lord to hang on to. I am not sure what I would to if I didn't have Him to go to. Know that He is there and He knows and sees..One of the Holy Spirit's names is Comfortor...I am also going to pray that you are able to experience the Peace that passes all understanding...that is the peace that we can feel even though all Hell is breaking loose around us...it doesn't mean the situation is miraculusly made perfect and we all lived happily ever after, just means that we can experience peace and even Joy..which is a fruit of the spirit. I find when I am there it is only when I have finally given everything to God, because there is nothing I can do anyway...at that point and only then can I move on.
I have had some bad stomach problems lately too, but not as severe as yours have been. It's hell, and sometimes I feel like giving up the fight. But I don't. Sooner or later, a good day will come around and give you the energy and motivation you need to keep on fighting. That's what keeps me going. I hope the stomach problem heals up fast. Just know that you are in the thought and prayers of many people, including me.
03-17-2009, 11:46 AM
Feel all the comfort and love...RedHairAngel...hugs...
I want to talk to you about you stomach issues to help you feel you have some control over your body...with your infection, did they prescribe an anti-biotic with an proton pump-inhibitor?
Antibiotics are very hard on your stomach and you would need the proton pump inhibitor, such a Protonix, Prevacid...with it.
Did you have a lower endoscopy too? Have you been tested for H.Pylori, Celiac Disease? Reaction to gluten can affect the skin too. I know...I had a rash for 5 months, deep holes, blisters from neck to ankles...and just finally my skin return to normal. Almost an 8 month total ordeal...I stopped eating all gluten...
I felt lost like you..seems the madness was never to end...but it has.
My skin was a fright. Chemical burned from the ultra potent steroid creams. Finally the antibiotics, oral steroids and going gluten free it surrendered. I was never diagnosed. They knew what it wasn't...but not what it was.
I also had H.Pylori...and the results of it I have gastritis, GERD and an impaired esophageal sphincter. I still take Protonix on and off. Protonix was my stomach's saving.
Before being diagnosed I'd lose my voice from the acid splashing up to my vocal cords. There was pain, it was so horrendous, it referred into my chest wall, back and neck. I had such a gnawing pain in my stomach I wasn't sure whether I should vomit or eat. My food was getting stuck also...went to the ER thought I was having a heart attack...
I had my esophagus dilated to prevent the food from getting stuck. Now it just moves slowly...
I thought all the neck pain, voice hoarse and gone was from my spine surgery...wasn't. I would get so hungry after I ate, then the next time I would bloat after a spoon full. My dinner would just come up into my mouth, from a burp, from a cough or just because.
It was the infection in my stomach. H.Pylori. It can wreak such havoc if it goes untreated. It can cause duodenal (small intestines) peptic ulcers, gastric ulcers which causes pain and to also spit out blood from the bleeding ulcers, GERD...all which you are experiencing.
Have the test done...or did they do a biopsy for it when you had you upper GI done. It can be diagnosed through a blood test too. That is how I was diagnosed.
What a difference in my stomach since being treated. I also take Reglan with my dinner to help move my food out of my stomach faster before I go to bed...sheesh...before, the next morning..12 hours later I was still belching up dinner.
If I don't be vigilant with my food and drink my symptoms if off the Protonix comes back...still trying to heal the esophageal sphincter.
Have the scheduled you to see a nutritionist to understand what foods aggravate it, what foods to avoid?
I would think, they should have prescribed an proton pump inhibitor such as Protonix to stop the stomach valves from producing acid.
Ulcers are also due to the corrosive effect of aspirin type medications, steroids and non-steroidal anti-inflammatory drugs (NSAIDs) such as are taken for our Lupus arthritis and myalgias. Are you still taking these?
If so, maybe consider less corrosive drugs, such as Vioxx, Celebrex...or Disalcid, Trilisate....
I think it important for you to talk with your doctor, go over your drugs, diet...to find a plan to get you feeling better. It is possible...so do not give up hope...
Turn that hopelessness you feel into strength...and take control over your health, read, seek out different doctors..and through proper food and drugs you can find physical comfort. And that can turn your despair into hope again.
Thinking of you...hugs.
03-17-2009, 12:12 PM
hi red hair angel
so sorry to hear about your place lately. I am constantly aggitated with all of us having to accept everything that happens to us as "lupus" attacks. We suffer for so long before seeking medical attention, only to be told it is lupus. I don't know how much we are supposed to suffer.
i am in such a flare that even pain meds won't give any relief. Crying does not help, sleep does not help, prayer does not help, anger does not help.....just can't find relief.
maybe we could all get in a circle, close the circle so tightly that no one, no pain, no tests, no hospitals, no drs. could get through.
please know that i am trying to send you strength to get past this....you have a lot of people here pulling for you to find peace.
03-18-2009, 11:28 AM
I just wanted to say thank you to all of you who have replied to me cry! Along with taking two antibodics I am taking Nexium, (the purple heartburn pill that heals the damage along with stoping the acide production) compizine supository cause I can't keep things down, percocet for pain, and another drug for migraines it has a seditave, tylenol and caffine in it, and propanolol which is suppose to control my migraines but actually helps my blood presure.
Some asked me if they did and lower scope not last week but I have had 13 of those done in the last 3 years. I have been tested for Celiacs negative at one time I was tested for Crohn's it came back possitive and now it is negative. I also have tested possitive for Ulcerative Colitis which comes back negative now.
I don't do NSAIDS as I am allergic to them all, I have been tested for food allergies and they come back neg or normal. I do have H.Plori and GERD right now they think from a valve thats not working right. Other than that they don't know how to help me out I am sooooo frustrated. I see my surgeon tomorrow. So maybe he has answers ----- Debbi
03-18-2009, 12:08 PM
Sounds like they are helping you, Debbi.. with the treatment of antibiotics and Nexium.
I having had H.Pylori...when it does resolve your symptoms in your stomach will resolve too. Treatment helps to heal the ulcer, lowers the risk that the ulcer will return, and lowers the risk of bleeding from the ulcer...no coughing up blood.
Stay with the treatment...sometimes some may need a second round of medication depending how much of the infection is in their stomach. To determine if the bacteria was radiated a breath or stool test is usually done after finishing the medication...
The blood test was the diagnosing tool for me....I used the pill regime, the small suitcase of pills for 14 days. I then had an upper endoscopy which confirmed it was killed.
I was having the upper scope done because my food was getting stuck...while in there he dilated my food tube...and did a biopsy to confirm the H. Pylori was gone..it was.
I still have GERD because of the esophageal sphincter not seating properly. I can go without my Protonix for a spell...and when I feel a bit too much action, acid in my esophagus I resume the pills...so there is hope, there is help.....
I know it is frustrating.
Having suffered from rashes too, not getting a definite diagnose is hard too... I think having Lupus, it puts our system into overdrive and we can react to anything one week and the next none...
I've been allergic to cosmetic ingredients..and then poof I am not...
Boils...antibacterial soaps can help to prevent bacteria from building up on the skin. This can reduce the chance for the hair follicles to become infected and prevent the formation of boils.
Have your doctors been lancing/draining your boils?
I find the more I learn about my diseases, the symptoms I feel so much better. I believe in becoming an expert on your diseases so I can be a better advocate in my health...and not feel so beatened and frustrated when I don't know what they are doing, talking about... I feel I have no control over my body when I am left in the dark...
03-20-2009, 11:13 AM
I wish I had a definiative diagnosis but I don't they are jsut guessing and stabbing and grasping at straws and i hate it. I hate the fact that I have to take all this medication and no one seems to know why it doesn't work right away. Maybe I am just being a whimp. ----- Debbi
03-20-2009, 01:13 PM
Debbi, you're not a whimp at all...I been through it, we all been through it...so we understand your feelings. Hate the pill taking, hate the appointments, anger with the doctors....then regroup our emotions and have a go at it again....
We have to...other wise we sink into the pit...
It is a roller coaster ride getting a diagnose. Frustrating to say the least. I know the importance of having a diagnose...we feel secure in feeling we are on a path to wellness...
Keep looking for your wellness....don't give up on you...
03-20-2009, 11:32 PM
I agree with Oluwa; you arent' a wimp.
You mentioned you take the purple pill. Does it work? I recently received some samples when I ran out of Omeprazole (generic for Prilosec) and Nexium didn't work for me. I am on 20m of Omeprazole in the am and prior to dinner in the evening. It's also cheaper with your insurance. I thought I would share it.
I hope you get to feeling better. Sending hugs . .. . . .
Take care & God Bless,
03-21-2009, 04:06 PM
Debbi, you are not a wimp! You've been dealing with constant pain for a long time and all you ask for is medical assistance that will ease your pain. Your frustration is understandable but I'm so happy to read that you're hanging in there and giving the doctors more time to find the answer. We sure do get tired of waiting sometimes, it seems like forever, but the body is so complicated that it's not always an easy fix. In the meantime, keep posting and let's go through this together. We understand you and what you're feeling.
03-23-2009, 12:54 PM
Omeprazole gives me really bad diahreah and cramping that doubles me over so I have tried that, pepid ac which works but again the big "D" aceaphex. rash, and "D". Nexium was the only drug that seemed to have not caused me more problelms then it was worth. I think the antibodics and nexium are kicking as I am not hurting as much in the stomach area now my lower bowels are another story and an on going symptom. I joined a Chronic Pain Anonymous group I can't spell but it helps to know that others feel the same as I do.
03-24-2009, 01:08 PM
I am glad to hear that the anti-biotics and nexium are starting to help. It is frustrating, I know, to have to deal with so much pain and so many symptoms while our doctors scratch their heads and experiment with medications and treatments. It would be so nice to be able to get one definitive answer and a sure-fire treatment that works. However, unfortunately for us, this is not the world of Lupus.
We all live in a world of unexplained symptoms that no one can trace, so everyone just says "It's your Lupus". That is not an answer, it is not a treatment, and it just infuriates us. But, it is, sadly, our world!
Most of the time, a treatment is finally found (sometimes after experimenting and suffering for a good year or more) that starts to eliminate some symptoms and lessen others. But, it is the suffering that we must deal with in the meantime that makes us want to give up.
We are all here for each other because I think that almost ALL OF US have been to that point, so we truly understand how you feel. We've been there and somehow, we weathered the storm and are here to offer you our open arms of understanding. We all do this knowing that, more than likely, there is another storm waiting for us around the corner (or even that we are, ourselves, in the midst of a terrible storm right now). But, only we understand one another, so we are here to support you and to give you comfort and to hope that you will soon weather this storm and continue to improve.
You Are Not Alone:grouphug:
Peace and Blessings
03-24-2009, 06:21 PM
Hi Red Haired Angel and Saysusie,
I would highly suggest checking out a book written by Maureen Pratt called "Peace in the Storm." She has Lupus and a very strong faith in God while offering suggestions on coping. It is really an awesome and inspiring book.
03-27-2009, 10:58 AM
I had a very very bad week the antibodics and nexium started to work but the side effects of that dreaded "D", and vomiting over took me and as much as I tried to keep things at bay I still ended up passing out from dehydration and ended up in the ER yet again. This time they gave to bags of fluids and an IV that contained antibiodics so I don't need to do the pills anymore.
Today what my doc calls my Lupus rash and joint pain is to the breaking point. I am almost in tears typing this cause i hurt so much and there is nothing I can do or take to stop the pain. The rash is just taking over. I look like a freak. I know God is in control but why isn't HE helping me. I guess I whine to much so I will try more possitive thinking after all it is friday and half my day is gone already that is something to be thankful for in itself.
I hope you all get a SUN/SON filled long spring weekend to enjoy pain free!
03-27-2009, 01:10 PM
I am sending you gentle hugs and hope soon you begin to feel a little ease from somewhere. Keeping positive helps, but when you are so overwhelmed it seems like the world is against you, but its not.We are all here for you and when ever you can get here fab, we will be waiting to try and give you support.
lots of love
03-31-2009, 12:05 PM
I am getting strong each day. I had some set backs like getting dehydrated falling and passing out ended up in the ER twice stuff like that. Today I go back for a follow up with the surgeon who did my scope a few weeks ago. I am anxious and not really looking forward to this visit but I understand that hoops must be jumped in order to acheive goals in life. Thank you for you Hugs and concerns and most importantly your prayers! Thank you so much in keeping me in your prayers they were felt and needed and appreciated!
A sister in Christ
04-12-2009, 05:27 PM
How was your follow-up? Was thinking about you....
04-13-2009, 04:20 PM
I don't like that surgeon doc who did my scope no bedside manners or sense of humor at all and he is a know it all taboot.
Anyways I am still fighting stomach issues and bile back up into the esphogus and stomach I hurt my PCP gave me hydromoriphone (morphine synthetic) to help but it just makes it worse. I am trying to get into a lupus specialist at Oregon Health Science University but that will take a miricle and right now I could use one - Debbi.
04-13-2009, 04:30 PM
I think you are very lucky these days to find a Doctor with any manners what so ever.Most have the god complex.Next time you see him, imagine him in the nude with girlie knickers on.If he makes you feel anxious cause of his obnoxious attitude, talk loud and firm and he'll soon listen to you. Dont forget...girlie knickers :)
Sending you gentle hugs
04-13-2009, 09:47 PM
Oh Angel...too funny! :) Girlie knickers..
Debbie....just wanted to let you know you are in my thoughts and prayers...sorry you are having so much suffering.
Please know that I care.......
04-13-2009, 10:01 PM
I am praying for you and I hope you get into see the specialist. I am so sorry you have had to go through so much.
04-14-2009, 02:56 PM
Waiting to hear how you are doing?
Peace and Blessings
04-14-2009, 10:37 PM
I'll remember you in my prayers!!!:yes:
04-15-2009, 02:41 PM
Every morning I throw up bile, and then my stomach hurts like you wouldn't believe. My PCP put me on questerian which should bind the bile acide up and make it pass but it just makes me constipated. Today I started to throw up coffee ground looking stuff not a lot but it was noticable, and then this afternoon I pooed the same thing so something isn't right. I have calls into my pcp and that surgeon dude i can't stand but nobody seems to think it is that big a deal until it gets worse. I have been follow the diet of low residue and bland I have been taking my nexium and carafate regularly but nothing is working! I want to give up but i keep fighting and will till I get someones attention ! thanks for your prayers I need them.
04-16-2009, 09:53 AM
Oh Debbie, I am so sorry to hear that you are still suffering. When is your appointment? Please let us know what the doctor's say and how you are doing!
Peace and Blessings
04-16-2009, 11:19 AM
Hi Red Head Angel!
Sorry to hear you are going through a tuff time and have for the past few weeks but you are FAITH FILLED and giving up is not an option even when you feel like there is no hope. GOD Is hope and ITS NOT OVER UNTIL GOD SAYS ITS OVER!!! Please know that this too shall pass and although there are no answers for what you are going through and perhaps you will never receive answers from the medical field you will get through this and these conditions will subside. I never thought I would be out of pain and I am vertually pain free now. You have to keep the faith and keep talking and praying. Keep people around you who make you laugh as I really do believe laughter heals everything!
I am praying for your recovery and wellness as you deserve to feel GREAT!!! You have Lupus...IT doesn't have you!!! YOU ARE A VICTOR not a VICTUM!!!
04-16-2009, 08:44 PM
Hi Debbie...I'm new here but wanted to send you hugs from me too and to let you know I'm also praying for you. ((((hugs))))
04-16-2009, 11:56 PM
I just want to let you know, I'm still praying for you!!! And everybody here care about you.
04-17-2009, 02:39 AM
Sending you gentle hugs.
04-17-2009, 10:55 AM
Thank you for the prayers, I am still throwing up bile and blood (the coffee grounds) and PCP said to get ahold of the surgeon and the surgeon said in not so many words though to "suck it up eventually it will get better"! I hate the medical profession around here it sucks big time anyways I keep the faith and I have Hope that God will heal this too. I am waiting for Oregon Health Science Univ. to get back to me with an appt date and time it is just a waiting game now. ------- Debbi
04-17-2009, 11:23 PM
Waiting is so often the hardest part of this terrible battle that we fight everyday against our medical issues. Do not stop fighting, you will eventually win the battle. Do not give up hope, without hope all is lost. Most importantly, do not forget that we are here fighting with you in spirit, sending prayers, love, hugs, and faith! Peace be with you.
Pretti in Pink
04-19-2009, 05:16 PM
Sorry to hear you're still not well and I will continue to keep you in my prayers. I also wanted to let you know when I read your most recent post of your condition, it was the same that my mother in law had a couple of weeks ago and she ended up having her gall bladder removed. I don't know what type of test they've done, but you might want to mention it to your PCP. Hang in there, we're here and praying for you!
04-20-2009, 10:32 AM
Thank you sooo much for your prayers they are working because I am feeling so much better. Pretti in Pink thanks if I hadn't already had my gallbladder removed I would have thought I was having a gallstone attack again it feels simular to what I am going through right now.
I was out in the sun for a short time yesterday and evidently my sunblocker isn't good because I have that lovely rash all over where my skin was exposed to the sun! Isn't lupus soo much fun during the spring/summer now if I can only convince my doctors that my rash is infact from the sun and not the meds LOL! ---- Debbi
05-04-2009, 11:34 PM
Darlin, Sometimes, we find ourselves in a position where we have to take responsibility for our own health improvements. When doctors don't seem to be helping,it is time to become an active partner in your recovery. I am not saying to exclude medical doctors, but what I am saying is, when I got in those predictments, and doctors didn't or wouldn't help me, I started looking for alternative treatments. I started with Nutional doctors, and started reading, on my own, all kinds of nutritional, and vitamin books , and taught myself about the positive and negative use of vitamins, and natural juices (made at home using a juicer). I figure God made every thing in a natural form to help my lupus quiet down, long before drugs (with side effects) were invented in a laboratory in a testube I bought books and a juicer and began to learn about which vegetables and fruites when juiced could calm my symptoms down. Low and behold, I started following the advise of several Neutrational doctors, and juicing,and after a while I started to feel better.I tried explaining to my MD what I was doing but he just knew that drugs were better, so, I quite telling him, and soon I was feeling well enough that he cut the dosage of my drugs way down. All he could figure out was that my lupus had been responding wonderfully to his drugs, and I nevere told him any different. TEE HEE.
You don't have to be a victum of lupus. By learning how to help myself, I began to feel like I was helping to battle my disease, and that took away a lot of my depression lupus had laid on me. You will be surprised at the strength to battle lupus you poscess. Allso, you have got to start practing positive thinking. Our minds re very strong, and can do a lot to make even lupus synptoms less painful. One way I learned to cope was to give lupus different names when it hit various parts of my body.(sounds dumb, but it worked for me) It would make me so angry that I was determined to get (name) out of my (where ever the pain was hitting). I read, and I jused, and I asked God to help me. I was sick and tired of the stupid pain, and I was determined to beat it.
You have to get determined darlin. Educate yourself, and find yourself a good Nutritional doctor to help you, but don't exclude your MD Doctor. you need him too. I will pray that your problems will quiet down for you. I have asked God to take me home many times too over the 39 years that I have been fighting lupus, but guess that isn't our call. When he is ready for us, we will go home, but untill that time, we have to become educated partners, in fighting our lupus.I did it. You can do. God bless.