Aa
Check check in
Hi lovely MH peeps. Thought I would check in. Still no word on the surgery date which I am trying not to let drive me CRAZY! Haha. I'm at my busiest time of year as my student's year end show is next weekend. I am doing okay with the pain meds. I've managed to keep my dose pretty low. My lovely new GP and I signed an opiate contract and I am going in every two weeks to evaluate my pain. I find that if I stay in bed all day until I have to teach I can manage without meds until 8 or 9 at night. I am still swelling in my abdomen, lymph nodes still the size of golf balls in my groin, still bleeding from my bowel. I am going in for a sigmoidoscopy tomorrow and so I'm fasting. They are going to sedate me due to my inflammation and severe pain. Agh I just want this over. At least I have good medical support (finally) and great home support, and my support groups, and you lovely folks. I feel that I will be able to keep my dosage minimal until surgery and then have a good taper plan at the end because I will not have the luxury of c/t because I have to keep working this summer. It's hard, so hard, but I'm doing it and honestly, I'm proud of myself. I am a totally different woman than I was three years ago. About a week ago I had a bit of a meltdown when the pain was bad and told my mom how scared I was, both of the pain and the drugs. She told me she'd been watching me like a hawk and that I should not fear. Last time I was a victim. This time I am proactive. Just needed to share this.
xo
Lu
xo
Lu
4 days ago, you wrote this:
"I see my GP in the morning where I plan to discuss my issues and my fear that it is adhesions from my endo attaching it to my bowel that is causing these issues. I am perhaps spending too much time on the internet doing research but all signs seem to point to this. I NEED SURGERY. So soon. If these symptoms persist I am going to go to Vancouver and to the hospital that my surgeon operates out of and not leave until I get surgery. That is how determined I am to end this.
Thoughts?"
I am truly confused Lu.....in the US...at least with my surgeon....there is a calendar that you are placed on.....you aren't left "just hanging" with NO SURGERY DATE......even if it is 3 months out....at least you HAVE a date that you are assured of. Is it not like that with your surgeon in Vancouver?
I have a sister that had endo.....very bad endo....by the time they did her surgery, scar tissue they didn't even know was there prior to the surgery had grown and attached to MANY organs including her bowel organs.
Maybe I missed something that you explained along the way....but now that you've had your scope......why can't they give you a surgery date?
I, too, am familiar with intense pain after getting clean...I'm on a medical journey to resolve it. Unlike you....all my tests don't indicate a surgery is needed....so I hurt for you....but I think it's time to get more assertive with your surgeon.....sorry if I have misunderstood or missed something along the way~
"I see my GP in the morning where I plan to discuss my issues and my fear that it is adhesions from my endo attaching it to my bowel that is causing these issues. I am perhaps spending too much time on the internet doing research but all signs seem to point to this. I NEED SURGERY. So soon. If these symptoms persist I am going to go to Vancouver and to the hospital that my surgeon operates out of and not leave until I get surgery. That is how determined I am to end this.
Thoughts?"
I am truly confused Lu.....in the US...at least with my surgeon....there is a calendar that you are placed on.....you aren't left "just hanging" with NO SURGERY DATE......even if it is 3 months out....at least you HAVE a date that you are assured of. Is it not like that with your surgeon in Vancouver?
I have a sister that had endo.....very bad endo....by the time they did her surgery, scar tissue they didn't even know was there prior to the surgery had grown and attached to MANY organs including her bowel organs.
Maybe I missed something that you explained along the way....but now that you've had your scope......why can't they give you a surgery date?
I, too, am familiar with intense pain after getting clean...I'm on a medical journey to resolve it. Unlike you....all my tests don't indicate a surgery is needed....so I hurt for you....but I think it's time to get more assertive with your surgeon.....sorry if I have misunderstood or missed something along the way~
Lu,
I'm with Amanda.
You are astonishing! I don't know if this will help but I've been thinking of you when I'm under the weather, stressed & in pain. Your bravery & spirit in the face of all you're going through is absolutely humbling . I'm doing a healing meditation for you right now & will continue to do so. Comfort, Peace & Healing to you, my friend.
Annie
I'm with Amanda.
You are astonishing! I don't know if this will help but I've been thinking of you when I'm under the weather, stressed & in pain. Your bravery & spirit in the face of all you're going through is absolutely humbling . I'm doing a healing meditation for you right now & will continue to do so. Comfort, Peace & Healing to you, my friend.
Annie
Awe Amandag I am weeping. Thank you so much....I don't even know what I am running on right now....Adrenaline for sure....The love and prayers of my friends and family (including all of you) I so need a light at the end of the tunnel. My boyfriend just said to me "You know what? I really, really HATE this disease". He shed a tear or two and this is not a man who cries easily. At least I am not in this alone. The last time I was. It is hard for me to share the burden of my suffering. I am so much a grin and bear it alone kinda girl. I guess this is making me stronger but right now I just feel ruined. I made it through another day and just hope I can find comfort and sleep tonight. My man said I have been screaming and whimpering even in my sleep. This is definitely bad.
I just want to say to all of you out there suffering- that even if you feel alone you are not. Human suffering is something we all share in.
Much love
Lu
I just want to say to all of you out there suffering- that even if you feel alone you are not. Human suffering is something we all share in.
Much love
Lu
My beautiful LuLu, please, please get better.
I preyed for you last night, and i will prey for you after i comment.
I am so sorry your going through hell, i wish i could come and hold your hand and give you a kiss and cuddle, and tell you i love you lots.
I wish i could come and sit beside you and tell you everything is going to be ok.
I dont want you to suffer anymore, and i want your pain to just back off and leave you alone.
My lady, my friend, please be safe and know i love you dearly.
I wish i could stop your suffering, but i will prey harder, i promise.
xoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxox
I preyed for you last night, and i will prey for you after i comment.
I am so sorry your going through hell, i wish i could come and hold your hand and give you a kiss and cuddle, and tell you i love you lots.
I wish i could come and sit beside you and tell you everything is going to be ok.
I dont want you to suffer anymore, and i want your pain to just back off and leave you alone.
My lady, my friend, please be safe and know i love you dearly.
I wish i could stop your suffering, but i will prey harder, i promise.
xoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxox
Guys I just need some prayers here.
My symptoms are escalating at an alarming rate. I saw my doctor on Monday and she said that all we can do is treat my symptoms (pain and bleeding) until surgery. She prescribed a long acting form of hydro (still a low dose of 6 mg) she wanted to go higher but I said no. Now I'm thinking this was a mistake because my pain was so bad when I woke up yesterday it felt like I'd just woken up from pelvic surgery. The referred pain into my shoulder is insane. I know this happened because I was active on Monday. It is my final week of classes with my students before their year end show this weekend and even though I've called in help it is still so much work. Last night in my teen class a wave of pain hit me so hard that I yelped and hit the ground and began to cry. I scared the sh*t out of them and I feel terrible about it. I have always managed to hide my pain. Please...I'm so scared. My boyfriend is also feeling scared and frustrated by his inability to 'fix' me. I'm sorry if I sound like a broken record here but this pain and misery is starting to break me. It's really stealing my joy and I don't know what to do.
I have breakthrough meds that are prescribed but as scared I am of the pain, I am equally scared to be altered on drugs. In a job such as mine which is all about being present in the moment, I feel like a failure for needing drugs to function.
I know, sounds messed up right? I am messed up. You all have been so great and I know there is nothing anyone can do....But any and all pep talks are welcome. I've gotta go teach in 2 hours and I am in bed with a heating pad trying to summon the strength to blow dry my hair.
I hurt so bad. This will pass. This will pass. This will pass.
My symptoms are escalating at an alarming rate. I saw my doctor on Monday and she said that all we can do is treat my symptoms (pain and bleeding) until surgery. She prescribed a long acting form of hydro (still a low dose of 6 mg) she wanted to go higher but I said no. Now I'm thinking this was a mistake because my pain was so bad when I woke up yesterday it felt like I'd just woken up from pelvic surgery. The referred pain into my shoulder is insane. I know this happened because I was active on Monday. It is my final week of classes with my students before their year end show this weekend and even though I've called in help it is still so much work. Last night in my teen class a wave of pain hit me so hard that I yelped and hit the ground and began to cry. I scared the sh*t out of them and I feel terrible about it. I have always managed to hide my pain. Please...I'm so scared. My boyfriend is also feeling scared and frustrated by his inability to 'fix' me. I'm sorry if I sound like a broken record here but this pain and misery is starting to break me. It's really stealing my joy and I don't know what to do.
I have breakthrough meds that are prescribed but as scared I am of the pain, I am equally scared to be altered on drugs. In a job such as mine which is all about being present in the moment, I feel like a failure for needing drugs to function.
I know, sounds messed up right? I am messed up. You all have been so great and I know there is nothing anyone can do....But any and all pep talks are welcome. I've gotta go teach in 2 hours and I am in bed with a heating pad trying to summon the strength to blow dry my hair.
I hurt so bad. This will pass. This will pass. This will pass.
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Herpes sores blister, then burst, scab and heal.
Im so glad you have friends and family support to talk to.
Your partner sounds amazing and must be going through pain with you.
Im going to do some research on this horrible disease so i can better understand it.
Its not nice being poked and prodded by doctors.
You remember to take whatever meds you have prescribed for your pain, this is legitimate pain remember and this doesnt count on your clean time.
You can worry about detoxing later, we know you are using them, not abusing them.
So you do what you have to do at the moment.
I can only imagine what you are going through and to be honest with you, you are the reason ive had 2 good days. When i heard how bad you were, i thought about you, compared myself and thought hey, im not sitting in a hospital bed suffering imense pain. Lulu is. And i picked myself up. All because of you.
I preyed for you again and will every morning and every night my beautiful Lulu.
We are all here to help you get through this tremendously tough time my sweet Angel
xoxo