Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
[Mods: Could you please leave this in Medical until after the surgery tomorrow, so people see it, since it is such short notice? Thank you!]
I’m sorry for the short notice on this! I’m having surgery to have my IV port replaced tomorrow at 3 pm EST. It’s outpatient. Ordinarily, I wouldn’t be worried about it, but since I have the Complex Regional Pain Syndrome, aka, Reflex Sympathetic Dystrophy, any surgery is a very big risk of spreading the horrible condition to yet a new area.
I tried and tried to save my port, but it didn’t work, and I didn’t have much choice. I met with Anesthesiology last week to talk about the type of anesthesia that they would use, so as to have the best chance to prevent the spread of the condition.
I had done a lot of research on it, came in with printed research, underlined and everything! It said that the best chance was IV anesthesia, plus a nerve block. But the anesthesiologist who will likely do it didn’t meet or speak with me (spoke with other doctors), and wouldn’t agree to do the nerve block. She didn’t rule it out, but only said later that she’d speak with me before the surgery.
So I’ve been through lots of agita about it. Truthfully, there are so many opinions on it, and next to no research, so who knows for sure? She will use IV ketamine though, so that is good.
I could really use prayers for the two of us to come to the right decision, and most of all, for it to NOT spread the condition, and for all to go well! Thankfully, my surgeon is great, no worries there.
Thank you, guys!!
Posts: 3771 | From around | Registered: Mar 2008
| IP: Logged |
posted
I will pray for you, Rumi!!! I'm so glad I saw this before going to bed. Bedtime is my best time for prayers...that and early morning when I wake up.
I will post myself a reminder.
I have a friend with CRPS and I know how horrible it is.
Many blessings and prayers that God will protect you.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Thank you, Lymetoo! I didn't mean to leave this post until the last minute. It's been a really stressful time with a lot to take care of at once. Thank you, again. You're the best!
Posts: 3771 | From around | Registered: Mar 2008
| IP: Logged |
sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Rumi, I love you girl! You know I'll be praying for you!!!
Glad I saw your post this morning as I often don't take the time to check in when I have early Doctor appts. But I just felt like I needed to today. Must have been God nudging me...
Hugs my friend! Wish I lived near so that I could be there for you to help you feel less anxious.
At least when you start to worry, remind yourself that you always get to speak with anesthesia befor the procedure.
And most important, you will wake up with a brand new fully functioning port. So you will be able to resume your much needed meds and IVIG.
I'll be praying and so will my mom!
Hugs!!! sammy
Posts: 5237 | From here | Registered: Nov 2007
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Awww, thank you, sammy!!! And give your mom a big hug and kiss for me, too! Thank you so much.
I know it will be alright. I have quite a few people praying for me, after I contacted them at the last minute last night!
Posts: 3771 | From around | Registered: Mar 2008
| IP: Logged |
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Good luck! I hope it went well.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
| IP: Logged |
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
me
Frequent Contributor (1K+ posts)
Member # 45475
posted
Praying for you, Rumigirl
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
| IP: Logged |
posted
Said a prayer for you this morning. Hope all is well!
-------------------- unsure445 Posts: 824 | From northeast | Registered: Jun 2008
| IP: Logged |
Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
<<<<< Rumigirl >>>>>,
Just saw this,praying all is well,and you are recovering. We'll be keeping you in mind,and prayers.
Jus' Silverwolfi
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
| IP: Logged |
I wrote a response earlier, and it got erased somehow before I could press submit (or whatever it is). I had no more ability to tolerate frustrations for a bit.
The surgery went well. I had two anesthesiologists, and they did do what I asked for, after much discussion. It was a different form of the nerve block than I anticipated, but the one they used is less risky.
I got home late tonight, and have been pretty wonky, still getting over the anesthesia. The worst thing is that I have really weird, deep nerve pain in the bottom of my pelvis and going down my legs, which
is sort of where the CRPS all started. That is, it started with a bad fall 2 ¾ years ago, where I ruptured my hamstring tendons completely off the sitz bone on one side, and partially tore the other side----although it took 3 months to get the right diagnosis and surgery to fix it.
Anyhow, I REFUSE to accept this new pain beyond tonight, and it WILL be gone by morning!!! I am turning this one over to God, who can handle it.
More tomorrow. Thank you, everyone!
Posts: 3771 | From around | Registered: Mar 2008
| IP: Logged |
Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hi <<<<< Rumigirl >>>>>,
Glad the surgery is behind you,and you are home,we'll be keeping you in prayer for your quick recovery.
Try not to overdo, TrekCoord[formerly TxCoord ]and I have both been guilty of overdoing,after surgeries or medical procedures. Then it takes way longer to recover.
Hugs coming your way...
Jus' Silverwolfi here
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
| IP: Logged |
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Thank you, everyone!
The pain in the pelvis and going down my legs last night was weird and awful, but I refused to accept that it would last. I stretched it quite a bit last night, which helped somewhat.
Then, I slept for 11 hours!! I kept being awakened by pain feeling like I was being stabbed in the leg, which is what I had in the beginning of the CRPS (before I knew what I had). But that pain is gone today, thank God! And thank you all for your prayers!
I'm really knocked out, but that is to be expected. Luckily, there is not too much pain at the surgery site, where the port was replaced. So onward and upward.
I can't thank you guys enough. I had a lot of people praying for me, which was a comfort.
Funny story: When I was in the recovery room, I was awake enough to talk, but have NO memory of that at all. I told Jon the same 2 stories about the surgery 3 times each with the same expressions, etc.! Good grief. Like groundhog day, but without the awareness or memory of it (You know, in reference to the movie).
Posts: 3771 | From around | Registered: Mar 2008
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Oh, and Silverwolfi, thank you for the reminder about not overdoing it. I pretty much know, plus, my body is clearly telling me by how knocked out I am.
Posts: 3771 | From around | Registered: Mar 2008
| IP: Logged |
Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hi <<<<< Rumigirl >>>>>,
You're most welcome, Keeping you in heart and prayers that the recovery goes very smoothly and quickly.
Glad you are resting as much as you are able,just don't want our Lyme Family to overdo after surgeries.I went thru some rough times,when I tried to do to much to soon,had to learn the hard way.
I can remember some odd reactions from the Surgical anesthetic and pain meds. Years ago,after a rib resection,and collapsed lung, I tho't someone was looking in the windows I was on the fifth floor.
When I had to have my gallbladder out, they kept me overnight[ I don't do well w/ anesthetics and nausea]. I saw a head w/o a body, the head was made out of beads,little bitty seed beads.
It bobbed in and smiled at me,then it bobbed back out of the room,and purple and brown giant moths winged thru the room and out a closed window. Bizarre things like that, happen to me,on some meds.
We've seen 'Groundhogs Day' so I get it...LOL.
You get better okay!!!
Jus' Silverwolfi here
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
| IP: Logged |
posted
OH thank goodness you were able to sleep... resting is good!!
Thanks for the humorous surgery stories!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Oh, well, postscript: I have been overdoing it waaaay too much! It is so hard not to fall into that trap, as I had to do it growing up. It is such strong conditioning.
Firstly, I had to hire someone to help clean, do laundry, etc. But it is hard to hire someone but not wear myself out to show her what's what, clear up, etc., and so it's too hard on me---arghhh! Especially because everything is such a mess, that I have to do the clearing up, which is a very big job. And I'm working as hard as I can to keep ahead of her.
So I had her the day before the surgery, which I knew was not the best plan, and then 2 days later (too soon!). I did so, partly because it was such a mess, and I needed help, but the timing was because she wants more work than I can give her, and I was trying not to lose her.
But it was overwhelming; I was exhausted. Then, my brother & his wife were visiting from Alaska, and I only see them once a year, so they came over last night. Truthfully, that was way too much, both the cleaning,etc., and then having them over.
On top of that, my family is so crazy and hard to take, in that, even though I told him what was going on with me on the phone (he will NEVER ask how I am!), they spent the entire time talking solely about them and their family, as always. Only after 4 3/4 hours of that, he asked about the cancer. But after I said a sentence or 2, he is off talking about when he had a biopsy. That's the extent of any talk about how I'm doing.
Jon & I were completely exhausted. And we might as well not be there, as they never acknowledge that we are there. I was so mad afterwards. It is never any different, regardless of my having told him how it feels over the years (gave up finally)>
Then, to boot, Jon had asked our nephew over for dinner tonight, even though I said it's too much for me. I wanted to see him, but was exhausted beyond words from the surgery. Somehow, he didn't hear me. So I blew up at him tonight before our nephew came over. I was so exhausted, all I wanted to do was sleep!
Lesson #8 zillion whatever for both of us!
And to top it all off, the woman I hired to help doesn't want to work for me anymore, I don't think, because she wasn't expecting to work so hard! I only had her come so much in a week that wasn't good for me in order to keep her! It's hard to find the right person to hire. I had a great woman a few years ago, perfect! But she is always busy, as she's very much in demand.
How many times do I have to relearn the same lessons about doing too much??!! Plus, I feel like I've really had it with my family. It's hard. Families are who they are; they won't change. And yet they're family. But the fallout for me after the fact---or even during, is just more than i can take anymore. Waaaah!
Posts: 3771 | From around | Registered: Mar 2008
| IP: Logged |
posted
Wow...that's a shame about your brother and how he treats you. People just will never "get it" until they "get it."
SIGH.
I hope you can get some rest soon and try to recover. I'm off to bed myself but wanted to stop in to say hello.
Hugs and Love to you!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Thank you, Lymetoo. My brother (and my other brother) will never get it. I've been there for him plenty, such as when their oldest daughter was tragically killed in a car crash with her 2 small children in the back seat. I was there plenty for them that year.
But whenever I see them or talk to him on the phone (same for my other brother), we might as well not be there. All they talk about is them, their family, their trips, etc. on and on and on. If I try to say anything about me, forget it, it's like a lead balloon. I'm done with it.
The hard part is putting my foot down when they do come around. But I can't go through this anymore, especially when I have NO energy to do anything under the best of circumstances.
Posts: 3771 | From around | Registered: Mar 2008
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
I was saying to my husband, that I can't do this anymore; this is it. He said, you've been saying this for 30 years! Yikes! It's time to do it differently next time, that is, not see them. It's hard, but it's way harder to go through all this to see them, and then pay the price heavily afterwards for a long time. Families can be unbelievably hard!
Oh, and they did do a lot on one level: drove in to see us in bad traffic, brought food for dinner, and brought Christmas gifts. That's a lot! But then they completely ignore us when they're here, ie, not asking or listening to anything about me/us. Everything is about them, on and on into the sunset.
Posts: 3771 | From around | Registered: Mar 2008
| IP: Logged |
dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
Sorry Rumigirl. It must be so hard! I hope that cleaning lady stays around for you and you can get some much needed rest and relaxation. Sending healing thoughts your way.
Posts: 2386 | From New England | Registered: Aug 2011
| IP: Logged |
Oh, and they did do a lot on one level: drove in to see us in bad traffic, brought food for dinner, and brought Christmas gifts. That's a lot! But then they completely ignore us when they're here, ie, not asking or listening to anything about me/us. Everything is about them, on and on into the sunset.
-
Maybe they just don't realize what they are doing. They sound like they care enough to go through all of the hassle to get there.
Next time you may just have to say, "May I speak and YOU listen for just FIVE minutes?"
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Oh <<<<< Rumigirl >>>>>,
So very sorry to hear, you got so very exhausted. it is hard when one is so ill. it seems no one really wants to here about it when we are ill...
Or, that is how it comes across in their words and actions. I guess that is another reason LymeNet family means so much to me. Our Lyme Family actually understands.
Prayers continuing for you to be able to rest, sleep and heal with out overwork or over stressing.
Lord, in this special Christmas season, let Rumigirl, be able to really relax, Help her to know when to speak up, and say enough is enough.
Give her wisdom to know the right time to speak. And thank You Lord, for Rumigirl willingly sharing her ups and downs with us!Because it helps us too, to share with each other and realize we are not in this fight alone! In Jesus Name Amen.
I too wonder, if your relatives don't realize how they sound. Sometimes I am sure, I talk to much about things that are happening. TrekC' and I feel somewhat isolated, with all the health problems.
So when someone really wants to know how we are... we tend to jabber on and on. TrekC' gets out more than I do,and for him that helps.
I know sometimes my heart is full,and I am concerned if I don't let things out, the folks I care about wont be there to hear it. Or that I may not be around later on to tell them.
I joke around about my 'Novelette 'letters, so I'll stop for now. i can obviously be long winded. .
Jus' Silverwolfi here
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Thank you dpei, Lymetoo, and Silverwolfi.
I have spoken to both brothers multiple times in the past, and then I gave up when it made no difference, and they reacted badly to what I said, which was very mild. I simply said that it hurt that they never asked me how I am or what is going on. And when I tried to tell them anything, even good news, they would never respond, like I said I was doing something terrible.
What you suggested, Lymetoo, sounds to the point. I really should have said something this time. My husband said he wanted me to "rescue him" when the blasted photos of their trip went on and on and on, and it was late, and we were exhausted.
It is so pathological though. It has been going on my entire adult life, regardless of what I've said. It doesn't matter if it is an hour phone call, an hours long visit, or a visit lasting days. We might as well not be there.
This brother's family is extremely insular; they are "married" to each other (I mean the adult children with the parents and each other).
In addition, they used to think that because I was involved in meditation that I "was doing the workings of the devil!!" What??!! So they've been extremely judgmental about everything in my life: my meditation, my work, my books, everything, even though they knew nothing about it.
So when I tried to talk to him about him never asking me how I am or being willing to listen once, he waved his hand at my bookcase and said, "We don't think much of this," (or something like that) when he knew nothing about what books were there.
So a complicated issue. I think a lot of it has to do with the fact that both brothers blocked out the horrible stuff that went on in our family when we were growing up and don't want to know about it. They know that I've dealt with it in therapy. So blocking me out is a way of blocking all that out, unconsciously. Plus, when you block stuff out, you can't block out some things and not others.
Well, that explanation was long and probably far afield for LN! It's just hard. I brought them up and loved them completely (not that they know that), so it hurts now. But they are who they are.
Posts: 3771 | From around | Registered: Mar 2008
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Silverwolfi, thank you for the beautiful prayer; I need it! I still have a lot to learn about not overdoing it. It's such a blasted strong groove from when I grew up.
As I say, Lymetoo, what you said was so simple and to the point, and at the time. Thank you.
Posts: 3771 | From around | Registered: Mar 2008
| IP: Logged |
Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hi <<<<< Rumigirl >>>>>,
You are most welcome,Families are so complicated,and it can be painful dealing with them.
I really get the overworking oneself part, when we were young, we were made fun of and yelled at for not doing enough, not getting better grades, it was like nothing was ever good enough.
One sibling took to a different lifestyle, almost hermit like, Holier than thou,'everything you believe is wrong' and so on, with fits of rage,and now drinking.
The other sibling is mentally unstable,with for real delusions of grandeur.It hurts, and all we can do is continue to pray for them.
<<<<< Rumigirl >>>>>, don't be to hard on yourself, LD and Co-infeections, plus the many physical issues we go thru are really difficult.
You do your best,and then rest,I have to do the same thing. Do what I can and then give the rest to God and make myself relax.
When you mentioned Meditation,it made me think of the Psalms, I heard a really beautiful Song based on this... :
'Let the words of my mouth, and the meditations of my heart, be acceptable in thy sight,O Lord,my strength,and my redeemer.' Psalm 19:14.
Don't let your families convictions convict you. Lately,with my Dads death, and handling things,I really have to ask for Gods grace,and mercy. Sometimes I want to lash out in anger... I am all too human.
Jus' Silverwolfi with hugs for you and prayers.
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
| IP: Logged |
ukcarry
Frequent Contributor (1K+ posts)
Member # 18147
posted
Good luck, Rumigirl. I hope you have less pain.
I was so sorry to read of your brothers' attitudes to you: there are only so many times that you can try wih some people.
There must be so many Lyme patients who have had the extra burden of family members not believing them or supporting them properly to cope with on too of the horrors of the illness itself....it is so very sad. I was close to my parents, but even so, they disappointed me in their failure to understand how ill I was.
Good luck with your healing
Posts: 1647 | From UK | Registered: Nov 2008
| IP: Logged |
posted
Yes, what you said makes perfect sense, Rumi. Being judgmental and about their wanting to block everything out.
That's so sad. My brothers mean everything to me and it breaks my heart that yours aren't there for you.
One of my brothers will listen to me for an hour. We can talk and talk. The other one is very nice and kind, but he's not a talker. We have nice little chats and that's it.
I'll continue to pray for your needs, Rumi. You deserve love from all angles. (and angels too!!)
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I skimmed this thread. Praying for the best for you, Rumigirl. I'm going through a very difficult time, too.
It's so hard to get support. I'm not sure if it's the case for all illness or just Lyme & related illness. When I first was diagnosed with Lyme - the protocol was so complicated. I thought it was like going through chemotherapy but it was a "do-it-yourself" version...
I'm in constant pain, yet I've never been able to get any disability or anything. How are we supposed to live like this? I hear you Rumi... We just want to be able to function. To live like "normal" folks. Yet, we are ill. Friends & family fail us.
I can't believe that the lady you hired to clean couldn't even hack it... So, sorry. This damn illness makes life so complicated. I don't even know what I have after spending tens of thousands of dollars & being ill for over 20 years.
It surely is some kind of torture. I don't know why we deserve this.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
sparkle, yes, I say the same thing: I don't know why I have to go through so much torture. But I don't try to figure it out; it's not my job.
I'm so sorry that you are also in so much pain. I think of you often. You were so generous when I first figured out that I had CRPS. And they won't even give you disability?? Did you use a disability lawyer?
Oh, and sparkle, when you said, Bb treatment is like "do it yourself chemotherapy," boy, ain't that the truth!! I need to go back to treatment for the infections, but don't know what I can manage physically, while I'm simultaneously dealing with cancer, and also need to deal with the CRPS---it's waaaay more than I can handle!!
The woman I hired to help is coming back, thank goodness. Although the irony is, although I need help, I don't have the energy to show someone what's what, oversee them, get the laundry together, etc. it all takes energy---that I don't have. Sigh.
Thank you, Silverwolfi (love that name!). That's a beautiful Psalm. Yes, I think a lot of us go through these painful situations with family, sadly. Ironically, although my brothers don't know it, I always went to Sunday School and church, was in the choir, and taught Sunday School, so their judgement is pretty strange. Jesus didn't judge!
Thank you, thank you, Lymetoo. You are so dear and such a stalwart here. What would we do without you?
Thank you, ukcarry. Everyone's love and understanding and prayers are really a comfort.
Posts: 3771 | From around | Registered: Mar 2008
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[group hug]](graemlins/grouphug.gif)
![[Smile]](smile.gif)
.![[Big Grin]](biggrin.gif)
Printer-friendly view of this topic