I'm new at this...this is my first post. However, I am not new to the pain of Lyme disease. I am sending heartfelt prayers to the Big Guy that the pain will soon be gone and you will be feeling better.
Posts: 1 | From Santa Barbara, CA, USA | Registered: Jun 2004
| IP: Logged |
lymebrat
Frequent Contributor (1K+ posts)
Member # 3208
posted
Hi Betsy,
So sorry to hear you are in such pain!!!
I have been so caught up in getting Derek to all his doctor appointments that I haven't been here in over a week...
So I am just now learning about all of this...sorry I wasn't here earlier to offer you support..
I have just said a prayer for you and will continue to keep you in my thoughts and prayers!!!
And a big thanks to Melanie for all the updates..you are a gem!!
I'm so sorry that I haven't been around much and missed what has been going on. I just want you to know that I am thinking about you and I hope that you are feeling better soon.
Lots of hugs are being sent your way!
frenchbraid
------------------ Stay positive. Smile. People care.
Posts: 948 | From Northwest, NJ USA | Registered: Jul 2003
| IP: Logged |
aaronkatie
Unregistered
posted
Thanks FB I appreciate your prayers.
Today I saw the Inf. Dis doc (he works with my llmd) and he agrees w/the cardio. that my body probably is reacting to a foreign object in it - unfortunately since i have had trouble with it since last Dec. when i got it, pisses me off.
We will see if the meds, ice, rest, etc will help - if not new plan of attack from there.
I can't thank you all enough (especially Melanie!), your words and prayers have gotten me thru this.
posted
betsy, iknow what you are going through is not easey try to hang in there and sleep as much as possible to allow the medication to work, like i said before i do remember having pain when i was having all my problems (my hubby reminded me) i was on tordol and morphine and i would still get break through pain there is a light at the end of this tunnel. my prayers go out to you and let others lift you up right now thats what we are here for.
love karen
------------------ waiting and praying for a miracle
Posts: 106 | From south western new york | Registered: May 2004
| IP: Logged |
posted
Hey Bets, I hope you are feeling better. I do not post that often but I do keep you and your family in my prayers... as well as the rest of this wonderful group. Stacey
Posts: 240 | From Southern Maryland | Registered: Jun 2003
| IP: Logged |
KBear
Unregistered
posted
{{{{HUGS}}}} to you!
I tried to do something cute with the smiley faces, but they wouldn't let me!
posted
Dear Betsy, I'm quite new to this group, so I was shocked reading about your ordeal.
Exactly the same think happenned to me 2 years ago.
Port was pulled out day before my out-of-state hospital stay (didn't know about LD yet). I was told it's anxiety! It felt like beeing hit by a truck and feeling really strange.
I flew home from MI to CO. Emergency landing in Denver. University hospital released me with pain killers.
In 2 weeks 5 more ER visits, my friend begging them to addmit me. No way. More pain killers.
On day 20! my BP (75/30) finaly got their attention. By them my both lungs were filled by 70% with blood clots!(VQ scan)
Best part of the strory, as we always need to laugh: duck yelled at me that I didn't seek medical attention sooner!!!
Laugh #2: As blood thinners don't work for me the same duck released me after couple of days from hopsital, as the chance of dying from clots in the hospital is greater than at home!!!
I hope you find out soon, what is causing the pain. Please, hang in there. I'll pray for you, so one day we can both laugh about stupid ducks together.
I'll be checking on your progress. Punkie
------------------
Posts: 89 | From Vail, Colorado | Registered: Mar 2004
| IP: Logged |
aaronkatie
Unregistered
posted
Thanks to all of you - I'm hoping the tests I had already have ruled out the serious blood clots though you guys do have me worried now.
The pain is still ridiculous and the spot where the port was is bigger than it was when the port was in which doesnt seem right.
Punkie, other than pain what symptoms did you have? where was the pain? I'm sorry i didnt read all of the posts, I appreciate each and every one of them and will get caught up once I feel a bit better.
posted
Dear Betsy, To answer your question what other symptoms did I have with the pain:
That was the most difficult to describe. I knew something was seriously wrong, but could not say what.
Mostly I felt like fainting, couln't eat due to nausea, had difficulty breathing once in a while. The port spot(2 years in use) got much bigger - swallen, reddish, but I had normal sedimentation, so infection was ruled out.
I had no BP or Oximeter at home, but now I know my BP and oxygen was very low. Getting to ER was so exhausting, that these measurements got higher when I got there. My heart problems never show up while under stress - so nothing was found in the ER.
They did a lot of tests - blood,CT of brain & spine, chest X-ray,ultrasound of the wrong spots. None of the meds they gave me worked.
I'm one of those sick people, who look like a top athlete, who just left a workout. But they didn't listen.
I really thought I'm going to die.
Sorry, I couldn't help you better describe what were my other symptoms. This was my first Pulmonary Embolism, so I had no clue. My previous blot clots were in the brain (3 times), and that feels completely different. My next clot (almost inch in diameter) stopped 1/2 inch from the heart and felt quite similar to PE, as I already knew the signs - no one could find this one for 2 month and several tests.
Please be persistent!!! Your symptoms are not normal, but you know if you are begging for help, you really NEED it!!!
I"ll keep you in my thouhgts and please let me know if I can help. Punkie
P.S. Later I found that this happened by not flushing the lines before removing the port in combination of starting birth control pills in the hospital for hormonal balance. I also have high Anticardiolipin Antibody since getting LD - that causes blood clots, can be inherited or caused by some infections.
------------------
Posts: 89 | From Vail, Colorado | Registered: Mar 2004
| IP: Logged |
aaronkatie
Unregistered
posted
thanks Beverly, you are always so sweet.
Punkie, thank you for the information - it is scary though as so much of it sounds so familiar to what i am going thru, but atleast knowing your story I will be persistent.
So thank you very much.
Whoever I've missed, I apologize, i haven't been reading alot, but i know how many are sending good thoughts and appreciate that more than i can say.
posted
Hi, I havent updated because so far there isn't anything to say - pain is still relentless but I'm doing as the cardiologist says. Also the ID doc who works with my llmd.
And trying to pretend the pain isn't there!
Thank you all again for all of your thoughts and prayers and now for thinking of Crimeoflyme. No prayers going to waste around here!
posted
Just wanted to let everyone know - thank you again for all of your support (for me and for Jodie - my partner in crime).
My physical therapist saw me for the first time yesterday since the port removal and she believes they probably nicked a nerve sometime (putting in/taking out) - not sure what to do with that right now.
But I am inclined to believe her for now, so though the pain is intense, believing it isnt life threatening has brought a feeling of calm.
For all of you w/similar experiences thank you for sharing and I'm sooo sorry you went thru this. I can't tell you how much I appreciate all of your prayers and thoughts.
Melanie - you are an angel here at lymenet and you helped me so much thru this on top of so much in your own life, thank you.
This is te first time I ever looked in GENERAL.I am so glad that I did. I am so sorry for all that you are going thru.
You are too sweet to suffer anymore.......you have already been thru the mill. I do hope the pain subsides. Praying for you and your two darling children.
My life has been in a whirlwind so I have not even been able to enjoy my favorite pasttime...............reading posts on lymenet!!!!
This is te first time I ever looked in GENERAL.I am so glad that I did. I am so sorry for all that you are going thru.
You are too sweet to suffer anymore.......you have already been thru the mill. I do hope the pain subsides. Praying for you and your two darling children.
My life has been in a whirlwind so I have not even been able to enjoy my favorite pasttime...............reading posts on lymenet!!!!
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!
Printer-friendly view of this topic