I remembered my blog today.
Tears come when I realize how behind I am.
I'm a wreck.
If I'm inspired, I may update more later.
After some fog lifts.
So lets just start with this week.
Meeting with anesthesiologist today.
Appt. with Dr. Wonderful Chiropractor and massage therapist on Thursday.
And surgery Friday.
That's it.
Sunday, March 11, 2012
Saturday, February 18, 2012
Pain
Things that cut so deep...
People's judgement towards me.
People thinking I'm faking my illness. My serious illness.
That people are scared of me.
That people don't understand my illness or my needs because of it.
That the one who did understand is 2000 miles away. (I miss you Gina!!)
That people just see my smile and assume that I'm doing good.
It just all hurts.
But I forgive them.
But I forgive them.
Much love to you all!!
~Lynnelle
Thursday, January 19, 2012
My first week in Ohio...
Tears
Adjustments
Doctors
Exhaustion
Fear
Tears
Homesick
More adjustments
Pain
More Doctors
Tests
Coumadin Clinic
More tests
An added diagnosis
And meds to go with
And more pain
And more pain
More adjustments
And more tears
And more fear
Pain.
There were a few visitors added in and my my memory foam bed, down blanket and flannel blanket in there. Those are the positives I can think of.
But basically, a very hard, hectic week. And today I am off to Coumadin Clinic, and getting an Echocardiogram and Tilt Table Test done. Another big, full day.
And to be clear, I am not complaining. Merely documenting my week. And the some of the emotions and things that I have faced.
And to be clear, I am not complaining. Merely documenting my week. And the some of the emotions and things that I have faced.
<3 Ciao.
Saturday, December 31, 2011
PICC-ture post....
The last couple days have been extremely hard with ER visits, infusion centers, Drs, etc. And here are pictures to explain some. But first, so you know why it started going down hill so, I'll give a quick intro.
I started developing symptoms of a blood clot or infection in my PICC line, hence the ER, a blood clot was found, and the line had to be taken out. That is the VERY short story of a long and VERY complicated process. Just let the pictures explain the rest.
I started developing symptoms of a blood clot or infection in my PICC line, hence the ER, a blood clot was found, and the line had to be taken out. That is the VERY short story of a long and VERY complicated process. Just let the pictures explain the rest.
First ER visit.....much waiting. The placed was packed!!
How many lines and sticks does it take a Lymie to get a blood clot dx'ed and her PICC line removed??
A very faithful friend for over 9 months.
Kissing it goodbye, preparing myself for the removal. I had no idea...
I was in need of much grace, and a friend suggested I write it on my hand. I loved it!
Second ER visit.
ALWAYS were leggings or something to the ER. You WILL be exposed and freezing cold and need them!!
The aftermath. The biggest purple spot was the insert site.
I how I feel now. I feel as if my 5th limb was hacked off. I knew it had to come out. Wanted it out before it caused more problems. But wasn't really prepared. And I'm still left with the clot pain. And my arm feels weird just rubbing against fabric since I've worn stockinette every day for more than 9 months.
And last but not least, God's grace is sufficient!!
In the mean time I have to go to the infusion center daily for Lovenox shots, and Coumadin doses, and INR testing. That's for about a week, then lots of other follow up stuff that I have no energy to explain.
Thank you all for your love and support who have been following this on FB. I'll be ok. Am ok. Just working through it. And should have another line in 3 weeks.
Happy New Year!!!
<3 Lynnelle
Wednesday, December 7, 2011
Sunday, December 4, 2011
D.C. trip - part 2
So, I am finally getting around to updating about my trip and all.
Its been a tough few weeks and the last couple of days have been particularly hard. But I am trying to get this done and out of the way.
I think part of the reason I have been so disconbobulated about righting about my visit is because I pretty much knew what they were going to say, so it wasn't a surprise or shock.
So Wednesday morning we had to leave our hotel at 6am. to catch the shuttle to the train station at the airport, we trained down to D.C. and then caught a taxi to Dr. Jemsek's office. And we arrived at 8:30, right on time. We were VERY happy that we had decided not to drive down into D.C. using our GPS!!
We met with the PA that we had scheduled with, as it was faster to get in with her, and fell in love! She was so kind and compassionate and we just really cliched with her. (Afterward it was a little sad to know that she would not be a part of my care as she does not deal with IV pts and that is the treatment they are putting me on.)
The short story is I am very sick and they want to get me a little better and get some symptoms under control before we start his intense IV therapy. So until the next time I see him, I am starting some new meds and supplements. Also getting a nodule on my thyroid checked out and a giant list of lab work done.
Also, they are concerned about my heart as I do have a lot of heart symptoms. Lyme and Babesia both cause a lot of heart symptoms, however, I have a pretty extensive family history of heart disease and failure. So I am going to get a full cardiac work up done just to be sure that there isn't other factors at play.
Dr. J's protocol pretty much is a pulsing plan. M/W/F are treatment days, 2 weeks on, 1 week off. He hits it with up to 4 different abx, to treat all the different forms that the Lyme bacteria takes on. And on the off days I would be detoxing with lactated ringers (basically like saline) and other stuff.
When you make the appt they say to expect to spend 3 hours in the office, plus you have to be 30 min. early to fill out final paperwork. Well, we were there over 5 hours and to say that I was completely exhausted is an understatement. I could no longer answer any questions or make any decisions. Everything they were saying was like a foreign language by the end.
After the appt we spent a while walking around (me riding in my wheelchair) trying to find food. However, the little bistros and delis aren't meant for whealchairs, whether no room for one, or the restaurant being down a flight of stairs.
Finally we just caught a cab back to the train station and went back to our hotel. I think it was after 4 when we got back, so it was an extremely long day!! I had just laid down when my brother and his family arrived and shortly later, my cousin and her family arrived.
Our hotel room was absolutely overflowing with people, kids, and noise! haha. But I was very happy to see everybody, it had been a long time. Its times like that where you do what you have to do, and you usually make it. Which I did!
Then Thursday we drove down to Virginia to visit with my Grandparents, which was SO nice!!! On the way down I had a pretty big gallbladder attack that just kept going, we had to stop about 4 times I think, for me to get myself together and go back down the road. It was intense but I didn't feel like wasting any more time than I had to just sitting along side the road!
My visit in VA was nice. Busy and a bit hectic, but nice. I got to see lots of family and even meet the man who will become the newest member of the Hilty clan. But Saturday night brought about a tragic accident where my cousin was shot in an hunting accident on my Uncle's farm where my Grandparents live.
He is going to be ok but I ask that you all pray for him and the family. They are facing a possible amputation of his right arm and this will be a tough decision to make! There was other abdominal damage done but they were able to fix him up, now its just a matter of time for that to heal.
So the shooting brought a whole new form of hecticness. But I was able to spend some special quality time with my Grandma after the helicopter, emergency everybodies, and family was all off to the hospital.
Then Sunday we drove back up to Baltimore and Monday my sister and flew back and my mom drove back to Ohio. And now you know the rest of the story. I will attach a video I made from the pictures I had on my phone from the trip. Enjoy!
Its been a tough few weeks and the last couple of days have been particularly hard. But I am trying to get this done and out of the way.
I think part of the reason I have been so disconbobulated about righting about my visit is because I pretty much knew what they were going to say, so it wasn't a surprise or shock.
So Wednesday morning we had to leave our hotel at 6am. to catch the shuttle to the train station at the airport, we trained down to D.C. and then caught a taxi to Dr. Jemsek's office. And we arrived at 8:30, right on time. We were VERY happy that we had decided not to drive down into D.C. using our GPS!!
We met with the PA that we had scheduled with, as it was faster to get in with her, and fell in love! She was so kind and compassionate and we just really cliched with her. (Afterward it was a little sad to know that she would not be a part of my care as she does not deal with IV pts and that is the treatment they are putting me on.)
The short story is I am very sick and they want to get me a little better and get some symptoms under control before we start his intense IV therapy. So until the next time I see him, I am starting some new meds and supplements. Also getting a nodule on my thyroid checked out and a giant list of lab work done.
Also, they are concerned about my heart as I do have a lot of heart symptoms. Lyme and Babesia both cause a lot of heart symptoms, however, I have a pretty extensive family history of heart disease and failure. So I am going to get a full cardiac work up done just to be sure that there isn't other factors at play.
Dr. J's protocol pretty much is a pulsing plan. M/W/F are treatment days, 2 weeks on, 1 week off. He hits it with up to 4 different abx, to treat all the different forms that the Lyme bacteria takes on. And on the off days I would be detoxing with lactated ringers (basically like saline) and other stuff.
When you make the appt they say to expect to spend 3 hours in the office, plus you have to be 30 min. early to fill out final paperwork. Well, we were there over 5 hours and to say that I was completely exhausted is an understatement. I could no longer answer any questions or make any decisions. Everything they were saying was like a foreign language by the end.
After the appt we spent a while walking around (me riding in my wheelchair) trying to find food. However, the little bistros and delis aren't meant for whealchairs, whether no room for one, or the restaurant being down a flight of stairs.
Finally we just caught a cab back to the train station and went back to our hotel. I think it was after 4 when we got back, so it was an extremely long day!! I had just laid down when my brother and his family arrived and shortly later, my cousin and her family arrived.
Our hotel room was absolutely overflowing with people, kids, and noise! haha. But I was very happy to see everybody, it had been a long time. Its times like that where you do what you have to do, and you usually make it. Which I did!
Then Thursday we drove down to Virginia to visit with my Grandparents, which was SO nice!!! On the way down I had a pretty big gallbladder attack that just kept going, we had to stop about 4 times I think, for me to get myself together and go back down the road. It was intense but I didn't feel like wasting any more time than I had to just sitting along side the road!
My visit in VA was nice. Busy and a bit hectic, but nice. I got to see lots of family and even meet the man who will become the newest member of the Hilty clan. But Saturday night brought about a tragic accident where my cousin was shot in an hunting accident on my Uncle's farm where my Grandparents live.
He is going to be ok but I ask that you all pray for him and the family. They are facing a possible amputation of his right arm and this will be a tough decision to make! There was other abdominal damage done but they were able to fix him up, now its just a matter of time for that to heal.
So the shooting brought a whole new form of hecticness. But I was able to spend some special quality time with my Grandma after the helicopter, emergency everybodies, and family was all off to the hospital.
Then Sunday we drove back up to Baltimore and Monday my sister and flew back and my mom drove back to Ohio. And now you know the rest of the story. I will attach a video I made from the pictures I had on my phone from the trip. Enjoy!
Wednesday, November 30, 2011
You may be a Lymie...
....if you didn't even realize that you wrote the previous post.
I got home from my trip and wondered what everybody was commenting on, went and checked it out and had a little surprise. haha...nice.
I'm sorry to you all who have been wondering what is going on and how the trip went and all. I am home and just trying to recover. And I've been in a really bad head space and not felt like writing or had the clarity.
I'll be back with a big update, soon hopefully!
Thank you all for the prayers during my trip! I literally felt carried on the wings of prayers and love.
So thank you!!
I got home from my trip and wondered what everybody was commenting on, went and checked it out and had a little surprise. haha...nice.
I'm sorry to you all who have been wondering what is going on and how the trip went and all. I am home and just trying to recover. And I've been in a really bad head space and not felt like writing or had the clarity.
I'll be back with a big update, soon hopefully!
Thank you all for the prayers during my trip! I literally felt carried on the wings of prayers and love.
So thank you!!
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