Tuesday, September 30, 2008
I am going to tell you about the whole experience for Sunday which begins on Saturday. :) I got up and tried to take a shower. I think I've mentioned before that showering with a picc line is quite the process, but we discovered on Saturday morning that the picc line cover would not go over my swollen hand (the one that I fell on the other day) so I wouldn't be able to take a shower. Because my previous picc line cover had ripped, I had not been able to wash my hair (nasty I know) so I decided to make a last minute stop at my hair salon to see if by chance they could wash it. I couldn't (after all) go to this movie showing with nasty hair, a splinted wrist, a picc line and everything else that was going on. I needed nice clean hair. :)
So I drove over there and explained my scenario. They were extremely nice and not only washed my hair (2 TIMES), they trimmed it and styled it so that it would be easy to fix on Sunday morning. This really means that they took the straight iron to it and flattened the mess out of it. :) I left there pleased as punch. Skip ahead to Sunday ... I wake up and get all my clothes ready. After all, there has to be a plan for what I will wear. I am a woman after all. I gather my favorite brown capris, a sleeveless orange shirt and a light green jacket. I pull out my light green frog necklace and find my favorite shoes. It's perfect. I go ahead and get ready way ahead of time. Then IT happens.
I realize I might have something in my eye. I go look. As if I had enough to deal with already, my left eye lid had swollen ... it was bad. I immediately go ahead and take benedryl to knock out whatever was going on. It was obvious to me that it was an allergic reaction to something because the swelling was getting bigger and bigger. It started feeling better, but then I got the overwhelming feeling of exhaustion. Great ... that's the last thing I needed because this thing wasn't going to be over until 8:30 and it was only 1. I go ahead and take a preemptive nap and wake up 5 minutes before we have to leave.
We arrive and have been told it's going to start later than planned and that I was put in the wrong theater. Instead of getting upset right away, I just asked to be switched to the correct theater. As we're waiting, I realize that everyone I know is in the other theater (my original theater). So I begin to panic that I might be in the wrong theater after all. I was concerned because my doctor was supposed to be speaking in one of them and I wanted to hear what he had to say. After all, that was one of the reasons I was there. It took forever for us to be seated because NBC 17 was in the theater interviewing the director of Under Our Skin (Andy Abrahams Wilson). Finally they let us sit.
I was frustrated at this point because I wasn't sure if I was in the right place and I wasn't going to be able to eat anything. They were serving BBQ and I do not eat BBQ. I decided to again ask about if I was in the right one and then I decided to find and ask my doctor himself. I found him and he said that he indeed would be speaking in that theater. (What drama for one little question)
The best part up until this part was that I had met an online Lyme friend of mine Melisa L. We did not get to chat long, but it was nice really talking face to face to someone I had been talking to online for a while. Shortly after my husband eats, my doctor comes in and begins his speech about the Carolinians for Health Care Access. This is a very important group that has been established for a while, but has been reactivated. We want to try to change legislation to protect Integrative Medical Doctors. He then introduced a lady that is apart of the group that was from the Lyme community and then a gentleman from the Autism community. After this, my wonderful Lyme doctor came and sat with my husband and I to watch the movie. This absolutely made my night. There were tons of Very Important People in that room (other Lyme doctors and others) and he chose to sit with us.
After this, our North Carolina Lyme Disease Foundation Founder and President spoke and the movie began. This movie was everything I hoped for and more. It was full of emotional stories of Lyme patients, full of Lyme Literate Doctors, full of symptoms of Lyme, and it was just full of information on Lyme Disease. It was nice to watch this documentary on the big screen in a room full of people who understand the journey that I have taken. Unfortunately unless you or someone you love has been through this journey, you can not even begin to understand. However, the documentary will impact those who do not understand.
At the end of the documentary, the director had a question and answer session. The question that I asked was how long until this was on television for the masses. He stated that they did not have a television deal yet, but that it was planned for release in the theaters in March. He urged everyone to come again and to spread the word that the it was going to be out. He said the more people are interested in the theaters ... the more likely they would be able to get it out on TV.
Of course my fear is that he'll want to run extensive expensive tests to show the same thing. OR even worse. they'll show serious and permanent damage ... OR he'll say its fine and then there is something wrong.
Of course all of this may not make sense since I didn't really post what happened.
Last week, I slipped at work. I landed on my right side pretty hard. I was mainly concerned with my picc line. So I called the hospital that did the insertion. I talked to McMuscles and McJeff. *woooo* McMuscles told me not to worry unless my PICC line wasn't working properly. So to do a treatment that night and find out how it was working. Then McJeff talked to me and called me "clumsy." haa haa. What a funny guy? ME CLUMSY? Yeah right. :) (KIDDING).
I realized shortly after the phone call that my wrist was swollen a bit and was in some serious pain. I had xrays done and it showed no breaks in the bones, but I was told a hairline fracture or even tendon tears wouldn't show up to treat it like a sprain. They splinted my wrist for immobility and sent me on my way with pain meds.
The pain meds did not touch the pain and also made me extremely sick. I slept for almost 24 hours straight and the pain has not receded in the least. I have a tiny bruise on my elbow, my picc is in good working order, and a huge bruise on my thigh ... but by far the most painful and worrysome thing is my wrist. I have to type with one hand and use one finger on my right hand to peck out the right handed letters.
So if you read this in the am, pray that they dont find anything serious wrong and that everything will heal on its own without the need for surgery or anything drastic like that.
The other concern is that the Lyme bacteria will use this opportunity to rear its ugly head to pound on my "weakened" (doctors words) state. Let's pray that this doesn't happen. So far so good on that front. :)
Monday, September 29, 2008
Stay tuned for details on my night with the North Carolina Lyme Disease Foundation showing of Under Our Skin.
Okay maybe not tonight. I hurt too bad still to type up something too long. but one day this week. It was AWESOME.
Sunday, September 28, 2008
this post will not be beautiful because of the wrist, but please keep Susie and Matt Sams in your prayers. Not so long ago, they lost their beautiful baby boy. Read their blog and you'll find a story of a brave and courageous Joshua and Sams family.
Susie has announced that she is pregnant with their 3rd child. Please pray for her and visit her website. What a beautiful family.
Thursday, September 25, 2008
(p.s. as far as we know I only sprained and bruised a few things --- nothing too serious, but it still is quite painful --- puts masochist nurse pain to shame).
Pray for me. I had a difficult day on 9/24. Let me put it this way: My body needs sleep. I (prior to July 17th) got at least 8 to 10 hours of sleep each night. Since I got the PICC line, at most the sleep has been 4 to 5 hours. And I can count those nights on one hand. Most nights it's more like 2 hours or less. I can't keep going like this.
The itching and now the pain from the dressing change is driving me crazy (to the point of getting a prescription for a lil medicinal help ... sheesh ... I thought i'd never see THAT pill ever again).
I'm out for now. Maybe an update later.
Wednesday, September 24, 2008
I remember feeling that way every day. It was awful. I worshiped the porcelain throne almost every night for almost 2 years and I just can not go back to that kind of living. Thank goodness I am only on the parasite drug for 3 more days and then I will go to something a little more homeopathic (which hopefully means a little easier on the stomach). The yeast drug will only be a few more days as well before I begin the homeopathic stuff. I just wanted to give the pharmaceuticals a chance to kill the beasts so that it would allow the homeopathic stuff to work the best.
If someone had told me 3 years ago (even 2 heck even last year) that I would be trying weird stuff to try to kill Lyme, Yeast, and all my blood friends, I would have laughed in their faces. At this point, I'd stand on my head and walk backwards on my hands if it would help. (Okay so I don't think I have that particular skill, but I could spin a mean rifle back in the day)
My doctors told me that I still have a long journey to go. I accept that, but sometimes I just want it to be "right now." This world is such an instantaneous world that they think ... why are you still sick after all this? Why aren't you well yet? Well, Lyme isn't that easy to "fix." Most Lyme literate doctors don't even know if it can be fixed. I want someone to fix me. I really do, but I know my body will be fixed in it's own time. I can't rush it nor would I want to.
Everytime I have a rough day, I go to different blogs. Today was particularly rough and I went to the one blog that makes me smile. More than that, it makes me pray. I've mentioned them before, but this family makes me go wow.
In a years time ... Tricia got placed on the list for possible transplant. Tricia found out she was pregnant. Tricia had a beautiful baby girl (weighing 1 pounds and 6 ounces at birth) in January. Tricia and Gwyneth had to be separated and even after she was born Tricia was in a coma and was probably the last person to even know that her daughter had been born. Tricia was placed on the transplant list and 40 days after being placed on this list received her double lungs from a most gracious family who had their own tragedy (May everyone pray for that family right now .. even though we don't know who they are .. Tricia has been given time with her husband and her daughter because they were selfless and gave life to her). Tricia left the hospital, Gwyneth left the hospital and they went home to the OBX to be a family under the roof of Nathan's parents. Shortly after they arrived home, they found out Tricia had lymphoma in her lungs. She's been on a very difficult chemo treatment and yet every picture posted she looks so uplifted and radiant. Just today, they signed a contract to purchase their own home.
People around the world pray for this family and check on this family every day. Every time I have a bad day, I just think about Tricia and her faith in God. It makes me feel a tiny bit better and realize that my "big problems" are really just rather small problems to God. Nothing is too big for God. If they can do it, I can do it.
P.S. I was even more emotional this afternoon than I have been the last few days. Sheesh. Sometimes it just sucks to be a woman.
Tuesday, September 23, 2008
Rob and I met when I was a senior in high school. I met him through one of my best friends and at first there were no sparks. In fact, I didn't like him much at all. I thought he was old and quite honestly I thought of him as a pervert. He and I hung out only because I was there for another reason and the place we were was the only decent hanging out place in that little town (at least at that time .. has it changed?) We would complain to each other a specific complaint. The convo was the same everytime UNTIL he taught me how to keep score in bowling. Then I found the ultimate pleasure when he began to give me back massages. I called it his magic fingers. :) "Can you give me the magic fingers?" I had no idea how perverse this really sounded until I was older. And I thought he was the pervert. Who knew?
It took us 2 years to fall for each other and another year for him to gather to courage to ask me out. Apparently every time he was going to ask me out I was dating someone new. Since I didn't really date in high school, in college I was a dating fool. (5 guys one semester not half bad eh? 4 of them were freaks)After a very short time of dating, we knew we were meant to be together forever.
On September 20th, I went to a wedding and realized the guy I was dating was not husband material. On September 21st, I hung out with Rob in the morning and that night I broke it off with the guy I was dating. On September 22nd, Rob asked me where I was the night of the 21st (we had always talked on the computer online while I was in college and that night I wasn't there). When he discovered that I had broke it off with that guy, he didn't hesitate to ask me. But being the kind of girl I was, I told him I had to think about it. I knew what I wanted my answer to be, but I didn't know if I wanted him to be my rebound guy. So the night of September 23rd, I said yes. At this very moment 11 years ago, I knew I had to give it a shot. Ironically almost as soon as I said yes, the computer lab closed early. :( It took us a couple of weekends before we could go on our real first date. He took me to see Haywood Banks (A musical comedy genius if you ask me).
My cousin died less than a month after he asked me out. I was absolutely devastated and he was still there for me. We were together a little over a year when he popped the question in the same town we met. I said yes, but he didn't hear me so I had to say yes again! It wasn't long before I had shared the news (and the ring) with almost everyone.
So on Tax Day 2000 we got married with most of our family and most of our friends. I have never felt as beautiful as I did on that day. Just thought you guys might like to hear the long long story of how my husband and I got together. Now we've been together 11 years and I can not imagine my life without him. When we said in sickness and in health, we didn't know I would be the in sickness and he would be the in health. His joke is .. "when is the in health part going to start?"
Monday, September 22, 2008
My physician's office is open a couple Saturday's a month so when I went on Saturday we discussed the rash. We pretty much determined that it was a systemic yeast issue and I picked up my prescription for Diflucan in order to rid my body of the yeast. I was ordered to continue the anti fungal regiment until it was no longer needed.
Then our suspicions were confirmed when I saw the microscope doctor later that day and she saw yeast on my blood slides.
P.S. I believe I have the best two doctors ever. One of them called me at home twice on a Sunday and the other emailed me a couple of times on a Sunday. :) I love my doctors. They rock.
Sunday, September 21, 2008
Episode: On Thursday, Jennifer arrives very late at her doctor's office hoping that someone is there to assist with a new dressing on the PICC line. Fortunately though it was late, Nurse J was there. She spent 3 hours on the phone with Rex Hospital, Dr. J, Dr. W. and Nurse M. She also wrote notes out for the hospital staff, and changed the oozy drippy PICC line dressing. On Friday, Jennifer arrives at the Rex Medical Building at 3:01 to begin the waiting for registration and for seeing Doctor McMuscles, Techie McHotty, and PICC line guru McJeff.
After moving from the registration waiting room and arriving at the radiology waiting room, Jennifer arrives at the vascular radiology waiting room. Upon waiting in the third and final room, she helps a man when he asks where they are. "Uh the hospital." That was a lot of help she was sure, but apparently he needed more answers. "Uh the waiting room?" Apparently that wasn't good enough either. :) So Jennifer provided a more detailed way to get there. "Tell them to go the radiology main desk or radiology registration and a volunteer will bring them to the radiology waiting room." Jennifer pondered whether it appeared she was the leading expert in hospital waits since they chose to ask her instead of the 10 other people in the cramped waiting room.
Finally McGuyshethinksisthetech appears in the door way. "Mrs. A?" McGuyshethinksisthetech called. Jennifer grabbed her belongings which included 4 pages of notes, a purse, saran wrap and quickly scrambled to the doorway hoping McGuyshethinksisthetech didn't notice her drooling when she was dozing off. "Mrs. A I just wanted to let you know that we have another patient in x-ray right now. It will be a few more minutes. We just didn't want you to think we had forgotten about you." She felt dejected that she had to go back to the uncomfortable waiting room chair watching the other 12 folks in the waiting rooms either dozing in the chairs or on their cell phones. Finally after 10 more minutes, Jennifer gets called to the doorway by technie McHotty.
"How are you doing?" McHotty said.
"I'm here aren't I? I can't be doing so hot." Jennifer said.
McHotty laughed and said "let's see if we can see what's causing the problems."
Jennifer notices a huge sign that says "proper attire required beyond this door" and says "HEY I'm not wearing proper attire."
McHotty says "that's for the staff" and he laughs.
Jennifer thinks to herself that she at least got a humorous tech.
First McHotty looked at Jennifer's arm and then removed the dressing so he could see the insertion point. He grabbed Doctor McMuscles to come in to look. After looking at it for a few minutes, he said that he did not think the actual catheter was compromised. He took into consideration that Jennifer was still being able to infuse a treatment on the 3rd with no problems and still got good blood return with her heparin syringe on the 4th late at night. McMuscles believes that Jennifer is having a serious allergic reaction to something that Nurse M & J are using, but of course doesn't know what. McMuscles determined that Nurse M and Jennifer should figure out on their own how to clean it the best way without leaving an itchy, blistery oozy mess in future dressing changes.
Shortly afterwards, PICC line guru McJeff waltzed in to help change the dressing with McHotty and when he saw Jennifer uttered the phrase "OOoo not you again." He winked at her and McHotty said 'you know her?' and McJeff said "of course, she's my favorite nervous, but oh so hilarious patient." As they were changing the dressing, they all were cracking up. At one point, he was taking off the stat lock (which had deteriorated from all the yelllow ooze) and he said "what's this yellow stuff?" Jennifer said "my bodily fluids, shouldn't you be wearing gloves or something?" and he said "Oooo now you tell me" and winked at her.
McJeff and McHotty began to change the bandage quickly as Jennifer says, "How many techs does it take to change a dressing?" She would have continued with the rederick of "1 to hold the PICC line, 1 to cut the bandage, 1 to push it back in a bit, 1 to write the codes for insurance, 1 to find the doctor, 1 to apply the new dressing, 1 to calm the patient, 1 to ....," but they were finding all the necessary supplies for this delicate "operation."
The new dressing for Jennifer consisted of a sterile 2x2 gauze and a hypoallergenic dressing. Upon beginning the dressing change, McJeff winked and handed her two huge rolls of the stuff and said "this is between you, me, and that guy over there" while pointing to McHotty. He said that the hypoallergenic stuff would help it breathe a lot better and have a little more protection than gauze and paper tape. He laughed and said "Don't do that again," all while pointing at the dressing that was removed that was covered in yellow ooze. Jennifer laughed and told him that Nurse J had been instructed to cover the PICC line in that manor over the phone by a doctor at the hospital.
To try to figure out the underlying problem, McJeff (and no JEFF .. this isn't you .. the guy's real name is JEFF. ) asked how it was being cleaned. He showed Jennifer a variety of supplies and finally she pointed out out two she recognized. One looked like a condom on a stick and the other looked like a vial of blood. McJeff suggested it was the blood vial looking one that caused all the blisters and begin cleaning the site with the condom looking one. It immediately caused burning and a heat that Jennifer has never felt before during a dressing change.
She calmly stated "ooo that burns quite a bit" and speculates that it is because the skin is so sensitive with the oozing blisters of fun that is causing the burning sensation. McJeff said "I've heard that one before" and winked. (Jennifer is beginning to think that maybe she should suggest to McJeff that he has Lyme Disease. After all, twitching is a symptom). He stopped cleaning and mentioned that he didn't like to torture his favorite patients though it might be a little fun. He recommended that Nurse M might not want to use the condom one from now on.
As soon as he applied the new dressing, Jennifer's arm felt warm and itchy. She was thinking at the time that the dressing either ain't gonnna work or that the condom cleanser would cause another reaction. McJeff helped Jennifer put on her Lime Green Jacket and she said "You always help me put on my clothes. At least this time, you didn't have to put on my shirt."
McJeff said "I always help a lady put on her clothes after I've finished my business with her." They laughed hysterically and Jennifer thought to herself that this could be a sexual harrassment suit just waiting to happen with all the winking and statements that McJeff is using. :)
Jennifer arrived home in the pouring rain and immediately took 50mg of benedryl for the itching and to help dry out the blisters that were still there in all their glory.
Jennifer's arm is itching worse Friday than it did Thursday. The bumps outside the dressing are smaller, but there is more of them. Sooooo in order to prove or disprove that this new type of dressing is or is not causing the problem; Jennifer is going to conduct an experiment on herself. She is going to place a piece on her belly or my leg or my other arm or something. She already did this with the tegaderm type of dressing that she has by Nexcare and no rash showed up on her belly after 24 hours. Jennifer's McHusband bedadined the spot and also alcoholed the spot before applying the dressing. She also placed paper tape on her belly as well. She discovered no rash or redness appeared at either site.
Stay tuned as Jennifer goes through the weekend with itchy skin and dreams of McHotty, McMuscle and McJeff and hopefully has no more leakage of the blisters.
Saturday, September 20, 2008
In April of 08, I was very sick. I wasn't moving forward in the healing way so my doctor suggested this very weird protocol (that I explained in an earlier blog). I was struck by the name. He called it "The Bradford Protocol" invented by Dr. Bradford. I inquired was it the same Bradford as the microscope. He confirmed indeed it was. I was given a contact of a lady that actually had seen Dr. Bradford and I called her. She told me that this doctor (not Bradford, but another lady) comes to her house occasionally and sets up the Bradford Microscope. I told her I would be very interested. The problem is that it's about 2 or 3 hours from my house. So I never thought it would really be an option.
Well this past wednesday, I get notice that this lady is looking for me. I call her and she informs me that this doctor with the microscope is coming to her house on saturday. By Thursday evening, it had changed plans even more. This doctor was actually going to be coming about 45 minutes away from my house. I was thrilled. So that appointment was today. Several "fun" things happened at this appointment. First, I met another patient of my doctor. She was very nice and besides Lyme we had a lot in common. Then I met another lady that I have been talking to online for several months. I had been looking forward to meeting her, but had no idea that she would be there. :) (though I did invite her to come, I wasn't sure if she'd be able to b/c of the short notice).
I found out many interesting things today. At my regular appointment with my lyme doctor, we had discussed how we thought my issues were now Yeast and maybe Parasites. We thought perhaps we had exhausted all the Lyme issues and that we were finished with Lyme Disease. I was thrilled with this. Then I got to the Live Cell Analysis. :( I don't know whether to find what we discovered exciting b/c of all the treatment we've done my blood work could have looked worse ... or disappointing b/c I still have a lot of issues to work through.
I saw lots of interesting things in my live cell analysis. *wow* If my blood looks as bad as it did now, I hate to imagine what it looked like a few months ago.
In the wet sample, she saw Lyme Spirochetes as well as Lyme Cysts in my white blood cells. One blood cell she looked at had four or five cysts in it. They were floating everywhere and eating some of my red blood cells. While we were watching, we saw one spirochete break off one blood cell and swim towards another. We also so many spots of Yeast. She said that Lyme and Yeast were definitely a concern. We saw several bacterial blobs that looked like a bunch of spirochetes bunched together with like tentacles (she called them blebs).
We also saw some lemon drop looking things and I don't remember what she said they were. We saw parasites in the wet sample as well as Black Fungus. There was a lot of both in the sample. She also said she saw Plaque. In the dry sample, she looked at several samples. In each of the samples, she said it was supposed to be a sea of red with a fisherman's netting of black over top. Mine had many white spots in it and the netting wasn't as prominent as it's supposed to be. She also said that there was a dark/light grey around the sample indicating that I have heavy metal toxicity.
2. Black Fungus
3. Lyme spirochettes and Cysts
6. Heavy Metal
I am worried that I have so many issues still. I saw what is in ONE DROP of my blood. If all of that was in ONE DROP .. what's in the rest? I am trying to be strong and be courageous and brave. It's very difficult.
Daniel 10:19 (Contemporary English Version)
The angel touched me a second time and said, " Don't be frightened! God thinks highly of you, and he intends this for your good, so be brave and strong." At this, I regained my strength and replied, " Please speak! You have already made me feel much better."
Friday, September 19, 2008
So July 17, 2008 I received the PICC Line. The first couple of weeks were so extremely painful that I thought "Just pull the damn thing out. I'd rather deal with weekly tries of IV's that end unsucessfully."
Rob had to help me slowly put on my shirt. Rob had to bathe me. Rob had to brush my hair. Rob had to get me comfortable in the bed with pillows so I could rest though I never would fall asleep. I had to use my left hand for eating b/c I couldn't move my right hand up to my mouth. I would miss my mouth completely because my eye hand coordination was so off. It was hard to drive b/c I couldn't use my right hand.
Finally there was a break through. I pushed through the pain to put on my own clothes. I pushed through the pain to brush my own hair awkwardly and to even wash my own hair leaned over in the bathtub. I was more able to do things with my left hand and things started getting better. THEN ... the blisters happened. I went in for a dressing change ... which is painful in itself and upon removing the dressing, they saw the blisters. Eventually those blisters started leaking and I was beginning to think that the PICC would get pulled because they were not looking good at all. I had it changed 3 times in 7 days.
What is a dressing change you ask? Sounds simle enough, but it's a somewhat complicated process. I go into my nurse's office. She gathers supplies that are all sterile. She has to wear a mask to protect my body from her germs. She has to wear sterile gloves. She pulls off the old dressing and removes the gauze from my skin. She then begins to clean the area with an alcohol swab, betadine and other skin prep. This process hurts. Sometime during this she removes what is called the "stat lock" which keeps the PICC line from coming out during the week and puts on a new stat lock. She then replaces with new sterile gauze and new clear dressing. Then she changes the tip with a brand new tip. Voila. It's done.
Well a week or two ago when we discovered the blisters, we figured that I must be allergic to some part of the dressing change. So we left off some parts of the cleaning ..a nd moved the stat lock a bit to give the blisters a break. Then on the 3rd change of the week, we changed the dressing so where the gauze was partially left exposed so air could get under there and dry out the blisters. The blisters have stopped oozing so we'll see what they look like on wednesday when I go in for a new dressing change.
The pain you ask? It is much improved. However if I lift something too heavy or lift too much .. then I feel it later and a heating pad is required to lessen the pain. Last week was a tough week b/c I thought I was able to do more and I realized very quickly that lifting a baby was NOT a good idea. Tylenol and a heating pad were my friends that night along with benedryl to stop the itching. I felt one night that I was just gonna scratch my arm off. Since July 16th, I have gotten a total of four nights of decent sleep.
Those of you that know me in real life, know that this is very difficult for me as I am used to sleeping 9 or 10 hours a night. So this lack of sleep has left me severely depressed. I think the last two weeks I have cried every day. It is very difficult because I do not want to go back to the days where I cried every day. That was a tough time in my life and I don't wanna go back there. There is a difference between now and then. Now I am getting treatment. I know I will get better. I know I am mentally strong. Then, I had no diagnosis. I had no treatment plan and I was extremely weak.
The most difficult part of all of this is accepting my limitations and having others accept that I can not do the things that I used to do. The other part is that I want to be able to do things with my best friends, but I am torn. Do I want them to see me like this? Do they want to see me like this? Do I care if they see a tube hanging out of my arm? Do they even care (that they have to see it)? Or do they just want to see me no matter how I am feeling or how many meds they have to watch me take or how many tears I shed while they are there?
My blisters had completely healed and my arm was looking great. I went in for one of my treatments and a dressing change and we cleaned arm thoroughly. That night it began to give me problems. It itched, it hurt, and it was oozing. That night, I had Rob get that dressing off of my arm to replace it with a new dressing because I had ooze completely through what was done that morning. By that morning, it was nasty again. I rushed to the doctors and had the nurse look at it again. She changed the dressing again. That afternoon I had an appointment with another lady there and it was oozed out so we changed the dressing one more time. This was time number 4. I was up there every day that week getting my dressing changed and my husband even changed it a couple times. Leading to 9 dressing changes in a very short period of time.
Stay Tuned: the hospital visit.
P.S. My blisters look better now. There was no oozing this last week and the blisters had dried up. :)
I'm exhausted on top of not getting my normal 10 hours of sleep per night, but also b/c i've been taking benedryl. I could buy some serious stockage with teh amount of money I've spent on Benedryl int eh last two months.
Give me a break from the itching please. sheesh.
Thursday, September 18, 2008
So Saturday morning after the Great Strides Walk, Rob said we could go see Hatteras. I was stoked. So on our way down, he said "there it is." I was a bit confused because it didn't look like what I thought it did. As we're getting closer, I'm like we shouldn't see it this close because it's still like 30 to 40 miles away. I'm realizing that this is actually the Bodie Island one. He pulls over to the area and we go look.
It was beautiful. We went into the shop and purchased a magnet for our fridge that had four of the NC lighthouses on it and also a map of the lighthouses. We took lots of photos. We got back on the road very quickly
We drive. I'm not paying attention and Rob's not paying attention. We comment on stores, schools and everything else and MISS THE SIGN. As we're driving we're realizing "Ruh Roh we're not in Buxton anymore." So we turn around and find the road for the tallest light house. We again take LOTS of pictures.
I had just CLIMBED A FREAKING LIGHTHOUSE. I made Rob take pictures to ensure that this was PROOF that I had climbed a light house. It was windy up there. I stayed close to the lighthouse only venturing to the railing near the air for a photo opportunity. I even took a photo of Rob up there. I needed proof to show my doctors that we climbed a light house.
So we walked all the way around the top of it and it was time to go down. RUH ROH RAGGY. My knees got shaky, my hands got shaky, and it was then I realized how far up from the ground I was. All I could think was Oh Dear God get me out of this light house and I'll NEVER do something this stupid again (did I say NEVER ... well ............. maybe one more time ... keep reading).
So we slowly descended. I was near in tears, but they never did surface. My knees were so shaky I was afraid that I was gonna tear down the railing. But ya know I figure a many skeered persons had climbed this structure and not a single one of them knocked it down. Sooo I was pretty certain that though I was skeered that I was fairly safe. I was so excited to see the ground that I almost kissed it.
We went into the Shop areas (which were the former lighthouse keepers residences) and we purchased this really cool thing. I don't know what it's called, but it's green and it went into a ship and let light go through it for lighting under the deck. I also got a t-shirt for the light house. I needed SOMETHING from that lighthouse. I climbed it after all and what's more is that I climbed down from it too.
So back to that NEVER statement. On Sunday, we decided to go up to Corolla to visit the Currituck Lighthouse. It was never our intention to climb this bad boy. We just wanted to go and take pictures. Well we walked in to take pictures and .. with some convincing from the keeper of the money (I think he just wanted our 14 bucks) and Rob, we decided to climb this bad boy. (b/c the keeper of the money said .. oh this isn't nearly as bad as Hatteras so if you did that one .. this one will be a breeze). Breeze was the key word. OMG .. it was so freaking windy.
Wednesday, September 17, 2008
Look forward to posts on problems with the PICC and my humerous hospital adventure with Priscillia (don't worry she wasn't harmed in the production of said adventure).
On Sunday, we weren't quite ready to leave. We took our time on the beach and collected massive amounts of shells. PS. We found a whole sand dollar. Ain't that freaking awesome? :) We took our haul back to the room and washed them free of sand. I didn't want all that sand tracked into our house. We packed up our stuff and went down for more free breakfast. This time I had two blueberry waffles, a danish, a cinnamon roll and something else that I just can't remember. It was delicious. :) Rob had his "standby" of sausage and cereal. But he shocked me, he also got a bagel. :)
It was nearing check out time so we checked out and went shopping. We went to a couple cool places and didn't buy a thing (we had already blown our budget for the trip so we couldn't get anything else). On our way to another very cool thing we did, we stopped by Duck North Carolina to eat Pizza. We couldn't stand that the pizza didn't do it's job the night before.
I'll tell you the very cool thing we did in the next post, but know that we got home 6pm. We thought we'd be home by 4pm, but decided that we'd stay longer. And ya know .. that is so unlike us. Usually we're awake 5am the morning of departure and out of the hotel by 6 and gone like the wind by 7. So it was nice that we took our time on the way back.
P.S> I spent most of Sunday morning trying to get a picture of one of these ... DOES ANYONE KNOW WHY THEY ARE EVERYWHERE IN THE OUTER BANKS?
Tuesday, September 16, 2008
After this, we got in our car to the Great Strides Walk. I've already written about that, but what I failed to mention is that Rita's Ice is Da Bomb. I've heard about Rita's and I've read about Rita's, but I've never TASTED Rita's. Rita's donated some of their delicious stuff for the Great Strides walk and boy .. I have to find my local one because it rocked my taste buds right off my tongue.
Now even three months ago, the walk itself would have put me in the bed for a day. I would have worn a knee brace afterwards (which I did the Walk in Cary, NC) and I would have needed lots of pain meds. I had asked before we left on the mini vacation whether or not we could do something that I have never done. Rob told me that we could possibly do that particular thing I wanted to do. We were both unsure whether or not I would have the physical capabilities of doing such items especially after the Great Strides Walk. I did not even think of the fact that I would have to deal with one of my greatest fears should we do said item.
I am going to skip around what we may or may not have done and go on with the rest of the day. Because that "said item" deserves its own blog. After all, I haven't even told my mother what I did. Once she finds out, she is going to be SHOCKED.
So after "said item," Rob and I went to this restaurant near MilePost 4ish? Now the thing is that on our way up and down the strip on Friday night, I *know* we must have seen at least 10 pizza place. We left before the pizza was being served at the Great Strides Walk and we were craving pizza. So we decided pizza it was. Of course on our way through Nags Head, Kitty Hawk and Kill Devils Hill, we could not locate ONE of them. The one place we did see was locked up tighter than (insert your own joke here). So we were going to turn around and try it again when we saw .... The Black Pelican. Now we had no idea what place this was, but we saw the sign .... Pizza till 11pm. So we went in. Now keep in mind, we are southern people. We do things the southern way. SWEET ICED TEA is the only kind of tea there is. We should have walked out when after I said "sweet tea no lemon," the waitress replied, "we only have unsweetened tea here."
Now if that wasn't to warn me off, once we did get our drinks it took an act of congress to get refills. We both ordered a little pizza. And boy was it little. I don't know how many pieces were there .. *7 or 9 or so* but I ate all but two and was still going for them when I realized that my husband was bout to chew off his own arm b/c he was starving and he had finished his pizza. So I offered him a peace offering of my two slices saying that once mine settled I would be fine. (heck no I wouldn't be fine .. I was STARVING, but I love my husband so ... the pizza slices were his).
After the act of congress to get the refills, it took another act of congress to get our check. (it was easier for the CFF to raise 46 grand in one walk than it was for us to get our refills and checks that night). Maybe they were having an off night and maybe they were better known for their .. *um you think they actually serve pelican?* other food, but we weren't too impressed.
After our visit to the Black Pelican, we went shopping. AGAIN. I had to find something special. You see I have this very special nurse. If it weren't for this nurse, I would not be able to do the stuff I did this weekend. So I had to find something and I had in mind what I wanted to give her. I just had to find it. After all how hard it is to find a starfish ... um ... rather difficult to find just the right starfish. In any case, we went from store to store to store trying to find the perfect one. Finally, we found it. :) (I had to get two too b/c there's another nurse there and I didn't want her to get jealous).
We went back to the hotel and opened up our presents to ourself ... two huge blocks of FUDGE. :) Then we went down to the beach for a walk and shell gathering session.
Stay Tuned next time for: Part Three
So our vacation began at promptly 12:02pm on Friday September 12th. Why that time? That is the precise moment we got in our car and drove out of the driveway. Our first 30 minutes or so we were still on 'home turf,' but after a bit of a nap and a couple of hours we made our first pit stop. We stopped at good Ole Wendy's to have a bite to eat. My husband had a chicken sandwhich and I enjoyed the chicken nugget combo and sprite with a twisted Frosty on the side.
We were on our way once again and made it to the first bridge. Now bridges, they frighten me. A few things other than bridges frighten more more (heights, the S critter, tunnels, etc.). Bridges over water ... they frighten me more than regular bridges. Now we had to go over this bridge to get to the Outer Banks of North Carolina. We not only had to go over ONE bridge ... we had to go over TWO bridges. One of those TWO bridges was one of those "fancy dancy" bridges that opens up in the middle when a boat happens to need to go through. Wanna guess what happened when we were on the bridge? If you said, "the bridge opened up while you were on it" you just won 17,000 points. And just like on the Drew Carey show, they aren't good for anything.
I decided to spend the time on the bridge taking pictures. If I was taking pictures, I wouldn't focus on the fact that I was actually on a bridge over the Alligator River (uh . you think real Alligators live in that river .. how else you think it got the name?) and then the bridge over one of the Sounds.
So we finally made it to the Outer Banks. We stayed at the Surf Side Hotel in Nags Head North Carolina. I highly recommend this place. The staff was very nice and the complimentary breakfast was .. well .. I complimented it. :) (I'll tell you more about what I ate later). The room we stayed in had a jacuzzi tub (it was HUGE) and you could see the ocean from the room. Way cool. (so easily amused eh?) Only thing I could have a thumbs down to about the room was that the toilet was not working properly (my husband fixed it for each flush so it wasn't so loud) and the batteries in the remote for the TV weren't working (but who needs TV's)(okay this is the last parenthesis I'll use this paragraph). The photo below is one building of the Surf Side. We stayed in the other one. I can't believe I didn't get a picture of the building we stayed yet got the building next door.
That night we drove around trying to find a specific gift for my mother in law. It was because of her that we were able to take this little impromtu get away. She was watching our dogs. So we went shopping at the only place to go shopping .. WINGS. We also went out to eat at Millers Waterfront Restaurant. Upsetting that I couldn't get a "small" portion of popcorn shrimp. I had to pay for "all you can eat" (whopping 18 bucks) and I could only eat 8 popcorn shrimp, 2 fries and 2 hushpuppy balls. Rob ate enough for the both of us in his meal alone though. Still a pricey 70 dollar meal. EEKS. It was our one big splurge for the weekend.
To be Continued ....
Monday, September 15, 2008
So the first reason that I wanted to go to the Outer Banks the weekend of the 13th was that there was a Great Strides Walk being held at a park in Dare County. This was pretty much the only reason I wanted to go to Nags Head, North Carolina. I have been there before and though I am fond of the beach with my new addition of the PICC line I wasn't sure how it would go over. I convinced myself that I needed to go for a couple reasons. First ... I thought Tricia has had a PICC line before and she lives at the beach. So surely I can go just to vacation for a weekend. Second .. I would be helping a great cause that touches the lives of so many. Thirdly, I needed a break and to put some things into perspective.
My husband and I arrived way early. (45 minutes to be exact) I tried to convince him that we should go help set up, but I just couldn't convince him to go help out people that neither one of us knew so we rode on the swing set for a bit. :) That was fun. ;) Then we drove back out to the main strip and went to the one stop shop for all your beach time needs: WINGS. If you've been to one Wings, you've been to them all. But for some odd reason, we have this fascination of going into all of them (well most of them anyways). So promptly at 9 o'clock, we returned to the park for registration.
I took charge and went right over to the table and filled out a little piece of paper with my name, address, phone number and all that good stuff. Then there was a spot that meant what group was I walking with. I had no idea there were so many groups, but I knew which group I would put down. Team PattySue. :) I was walking for Tricia. I made out my beautiful check and passed it over to one of the many volunteers. My husband and I made our way over to what I figured was the central hang out. I wish I had taken a picture of it, but Nathan's mom made the most beautiful arrangement on a table. It had the ducky and a huge thing of roses with a beautiful picture of Gwyneth Rose. With the picture and roses (and little tubes of water for the roses) was a sign saying that we should buy a rose to take on the walk with us b/c we would be walking for Gwyneth's mommy. It was beautiful.
My husband and I spoke with Nathan & Tricia several times. I even posed for a picture with my new friend. :) My husband and I walked the walk bringing up the rear. Shortly after we returned, I met Megan and Janet. But the biggest thing for me ... I got to meet Gwyneth Rose. It was all I could do not to beg to hold that little precious baby. I just wanted to touch her little baby feet. Rest assured even though it was a hot and sunny day, Tricia covered that baby from head to toe with Sunblock. What a fun crew Tricia has as family. :) That is a day that I will cherish for a long long time. Not only did I get to visit with Nathan and Tricia again, I did something that even shocked me after the Great Strides Walk.
Oh I failed to mention the biggest thing. Last year, they raised 30,000 dollars for CFF. This year, over 46,000 dollars was raised and money is still being counted. :)
Look forward to tomorrow's blog (maybe tomorrow .. maybe a few days from now) when I post pictures that will shock the world. (ok at least those who really know me)
Sunday, September 14, 2008
Mini Version: Saw Nathan and Tricia, met Gwyneth Rose, Did the Great Strides Walk, Did something I never thought I could do, Did a lot of shopping and walking on the beach. :)
I leave you with this little nugget that my friend Patience shared with me a while back and I've held onto dearly.
"The LORD is the everlasting God, the Creator of all the earth. He never grows weak or weary. No one can measure the depths of his understanding. He gives power to the weak and strength to the powerless. Even youths will become weak and tired, and young men will fall in exhaustion. But those who trust in the LORD will find new strength. They will soar high on wings like eagles. They will run and not grow weary. They will walk and not faint." Isaiah 40:28-31 (NLT)
Saturday, September 13, 2008
So I called my husband and told him everything. He started driving to pick me up. I called about 3 people that I knew had picc lines to help calm me down, but no one was answering. So I just started pacing my way to the hospital.
So my husband and I trotted over there. After a lot of "go here" and "go there" and "you're not in the right place," we finally found out where we were supposed to be. We walked into the hospital at 9:15 or so and walked out at 11:45. A strangely looking man came out to get me. I told him I was extremely nervous and he said that there was nothing to worry about and that they would go over every step. (I will refer to him as Funny PICC line Guy aka McJeff in future posts)
Throughout the 45 minutes I was in this sterile room, I continually made jokes so that I could put myself at ease. It's my coping mechanism. By the end of the procedure, the doctors were also making jokes. I think they could sense that was what I needed and not a step by step instruction of what they were doing. I got a "this is gonna pinch a little" right before a sharp pain hit and I said, "My husband would say that's doctor speak for it's gonna hurt like Hell." They all laughed. Really only two parts hurt. Now I don't know exactly what they did, but I'm assuming that the parts that hurt were when they gave the shot of lidocaine and when they punctured the skin for the PICC. I was covered in all sorts of dressings so I couldn't see what they were doing, but what I could see was the monitors that had the picture of my insides on it. I watched the tube in my chest. I saw my ribs. He said .. and there's your heart. SEE GUYS I DO HAVE A HEART. :)
If I had known I was going to get this procedure done, I would have worn a different shirt. the shirt I wore was very tight and very difficult to put .. they had done the insertion. I will explain the PICC line in a moment, but first let me leave you with a joke.
How many doctors does it take to change a light bulb? 6
1 to prepare the items for changing the lightbulb.
1 to calm the lightbulb
1 to do the billing portion so you can be reimbursed for the lightbulb
1 to do the shot of lidocaine so the lightbulb doesn't feel a thing
1 to close the door of the sterile so the new lightbulb doesn't get germy
and lastly 1 to actually change the lightbulb
*laughing may commence NOW*
So What's a PICC line? In laymen's term, a picc line is a tube that enters my vein and goes up my arm and into my heart. Then the medication will go through the tube instead of my veins and my heart will pump out the medications. There is about a 3 inch tubing that comes out of my arm and the end of the tubing there is a white thing. The white thing is what all my medication attaches to. There is a "clamp" that I have to undo for medications and as soon as medications I have to clamp back.
What will this do for me? I will no longer feel pain of a weekly needle stick. I will no longer feel pain when the medications go up my arm because my veins are protected by the tubing. It will take less time to do the medications because they'll be able to drip it faster because it doesn't hurt.
What was I worried about? I was told no lifting and I was very cautious about moving my arm much at all. Besides the pain from having a tube shoved up my arm .. I am very worried about bacteria getting into the tube. I was worried the clamp will pop open and I'd bleed out everywhere. I was worried about how it looked to other people when I walked around with what's essentially a cut up sock on my arm. It's either that or walk around with the worry out bacteria getting into the line or being bumped into or them seeing the actual picc line itself.
After a month, the massive pain went away. I felt like it was apart of my body, but if I lifted too much or moved my arm too far out I felt a lot of pain. I also am allergic to something they are using to clean it with so it's causing lots of blisters, rashes and oozing. I will post about my hospital visit from the other day soon. McJeff had a starring role in that visit.
What would I tell others that were considering this as an option?
1. The procedure itself is essentially painless. It was fast and easy and if you have the right picc line staff .. they tell you what's going on so that you're not scared.
2. the pain comes about 30 minutes after and the pain of the PICC ends 3 weeks later, but if you have allergic reactions to the cleaning agent .. the pain returns. :(
3. Go to dick's sporting goods store .. buy UMBRO soccer socks for women (or men if you have a huge arm). You can cut the socks up easily. I made 4 picc line covers out of one pair of pink socks. There is another sock that dick's sells that did not work as well. As soon as I cut it, it deteriorated.
4. apparently GLAD press-n-seal is your best friend. I haven't bought it yet. I actually wound up buying a Dry Pro Picc line cover. You have to cover the picc when you shower/bathe because you can't get it wet.
5. Bring deodorant with you to work. I didn't get it good yesterday and about 4 hours into work ... I was sweating like I had been outside for an hour in 100 degree weather. Hope no one could smell me. :)
Now it has been almost 2 months since my PICC insertion. I am still having trouble with it, but we are working on finding out exactly what I am allergic to and hopefully it will be removed soon anyhow.
Friday, September 12, 2008
This post is scheduled to be posted on the night that I will be in the Outer Banks. I am so stoked about that. I will post after I return about how the trip went and how the Great Strides Walk went that Nathan and Tricia did (whether I was able to go or not shortly after returning from the mini vacation).
The Lymies call it the PICC Line club. People either want to be in the club or they want to steer away from the club. At the start of treatment, you want to be as far away from the PICC Line Club (PLC) as possible. However as time goes on and you get more and more IV's ... the PLC becomes either necessary or desireable depending on the condition of your veins. I will explain the PLC in a moment, but first let me explain that since Feb 07 I have been going into the doctors once a week or once every couple of weeks to get IV's. At one point, the frequency was twice a week. The first kind of IV's I would get really only made me tired. I could drive afterwards, but not much else. I could get home on my own and take a long nap. However, if you go back to Tuesday's blog, you will see that I decided to do a new treatment. These treatments render me of doing anything. The first few treatments, I even needed help going to the bathroom. Sometimes I couldn't stop drooling after the treatment. I couldn't control the muscles in my throat to swallow.
I had known for some time that I would probably be needing a PICC Line.
What's this got to do with the PLC you ask? Well July 17th was supposed to be an ordinary day for me. There had been talks of me getting a PL, but we weren't really going to discuss it until the end of July. For some reason that day that I don't remember, my father dropped me off at my IV appointment instead of my husband. I guess maybe he had to work and couldn't be late. I waited for my nurse. She then proceeded to look for a vein. I got a bunch of "Oh honey" and "I'm so sorry" and "I just can't find one." Still she stuck that needle into my arm trying to find a vein. The first one she prodded for what seemed like 15 minutes, but it probably was only about 2. That one hurt, but it wasn't any more painful than usual. The second vein she prodded we both thought she got. It was painful, but once I got the heating pad on it I knew it would be fine. UNTIL, she turned on the IV itself. I screamed out "OH MEREDITH." "OH MEREDITH" isn't exactly the best thing to scream out. She stopped the IV quickly and pulled it out. She grabbed my other arm gently and said "what about here?" she touched on a spot that almost made me jump out of my seat. So she tried one more spot and at this point I am full of tears. The pain of the three tries and three failures was more than I could take. So she sent me over to drink more water and heating pad my arm some more. She went away in private to talk to my doctor.
They immediately went to the PL discussion because that's what we were going to set up at my next appointment at the end of July. He comes out and looks at my arms. His eyes are filled with compassion and he asks me how I'm doing. That's a loaded question there. I fill him in with all the details of the last couple weeks and he decides he's going to set up the appointment for next week.
I broke down saying that my husband had off that day and that I was missing a lot of work and that I needed something that day because I was going downhill fast and I just did not want to get back to where I was because that spot wasn't pretty. I did not even enjoy life 2 months ago (now that was May 08). I was fed up with everything and I just was done. If waiting another week for a treatment was going to bring me back to where I was 2 months ago, I felt like screaming "put a fork in me I'm done."
He left the IV room again saying he was going to see what he could do. So he called over to the hospital and came back. Once he returned, he said something about doing a miracle. I had to get over to the hospital right then and the doctor over there would do it immediately. Then after it was inserted for me to come back for my treatment.
This was the time to heal, build, embrace, mend and love all in one moment.
"There is a time for everything, and a season for every activity under heaven: a time to be born and a time to die, a time to plant and a time to uproot, a time to kill and a time to heal, a time to tear down and a time to build, a time to weep and a time to laugh, a time to mourn and a time to dance, a time to scatter stones and a time to gather them, a time to embrace and a time to refrain, a time to search and a time to give up, a time to keep and a time to throw away, a time to tear and a time to mend, a time to be silent and a time to speak, a time to love and a time to hate, a time for war and a time for peace."- Ecclesiastes 3:1-8
Thursday, September 11, 2008
A year or two after the seizures started, I began having these spells. I would wake up in the middle of the night with sweats. Immediately, nausea would hit. Shortly after I would be in the bathroom vomiting. This would happen at least three times a week. The sweats would be so bad that I would have to change the sheets on my bed and the mattress would be soaked.
I graduated college and got married. I kept on having these nightly spells. I was miserable. Finally decided that I had to see a doctor. I drove to Urgent Care feeling dizzy and miserable. For the 2nd time, I got the whole it's stress causing your problems. My husband begged me to go see his doctor. I couldn't see that gentlemen, but I did see his nurse practitioner. For the first time, I felt like someone listened. The thing is though eventually she said it was stress too and put me on an antidepressant. They helped, but my problems were far from over.
In a short time I had two surgeries. The second was a gallbladder surgery. I thought my troubles were over. If I knew then what I know now, I would know that surgery was just the beginning of my troubles. A few weeks after that surgery, I was bit by a tick. I didn't realize it at the time because it was hidden. I kept having this itch. However, my body itched all the time so I figured that was it until I finally decided to look. There it was. A huge blood sucking tick attached to the back of my knee. I removed it and thought nothing of it.
I started having joint pain and exhaustion. I had just turned 30 so I attributed it to that, but I saw the doctor because I saw faint rash on the back of my leg. He said that he would give me two weeks of antibiotics and I would be cured. He noted that the test would more than likely come back negative, but after two weeks of Doxy I would be "just fine." I took the drugs reluctantly and two weeks after I finished, I started feeling tired again. Not just a little tired, I'm talking falling asleep at the wheel tired. My joints hurt, my head ached, and I felt like I was getting the flu. I thought to myself, "Great just what I need. The flu."
I went back to the Urgent Care and they told me that I probably did not have the flu, but a particular stubborn case of Lyme Disease. He gave me 2 weeks of another antibiotic and said that I would feel better. Four weeks later, I wound up at my regular doctor's office. I'll spare you the intricate details, but I wound up having four more weeks of antibiotics for an ear infection. Then when the joint pain did not go away, I was sent to a very insensitive Rheumatologist. (they thought Lupus, Rheumatoid Arthritis or something else, but those tests were negative) When my headaches got worse and I started having muscle weakness, I was sent for an MRI and to a neurologist.
I was on Celebrex and Neurontin for my headaches and joint pain. I started having memory problems, word finding problems, and my exhaustion was endless. I was miserable and my husband finally did some research on Lyme Disease. We found out how difficult it was to treat and diagnose. We contacted a nice lady at the North Carolina Lyme Disease Foundation to find a doctor who was knowledgeable in not only Lyme Disease but other illnesses too. After writing a letter to this man, he called me and said he could help. I wasn't hopeful. I was sure that he would say it was in my head too.
But that morning, I went to his office and he listened to me for over an hour. He asked my husband and me numerous questions. We answered. I'll never forget the words out of his mouth, "Jennifer, I know what you have and I can help. You have Lyme Disease. It is written all over your forehead. I will tell you why all of your test results have been wrong and we can work on a plan together to fix you." I'll never forget how I felt when I stumbled out of his office for the first time. I felt hope. For the first time since 1995, I knew that someone cared and listened. He put all the pieces of this convoluted puzzle together.
Since the end of February 07, that physician has been my rock just like all other Lyme Literate MD's have stood by their patients to treat them. LLMD's put their medical licenses on the line every day just to treat LD patients. They research every day to treat it with the latest techniques. I consider the people in that medical practice my family. They have given me my life back. I remember barely walking into that office and now I can run up the stairs to his office. The last 18 months of my life have been miserable, but the next 18 months of my life will be the best that I have had in 13 years thanks to the my doctor and his wonderful nursing staff.
I can't wait to finally kick this disease. Unfortunately, I am also dealing with some co-infections and candida (yeast) due to all the years of antibiotics. However the experimental treatment I am doing will help with all of those issues. I owe my life to Dr. P (and his wonderful nursing staff)
"Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything." James 1:2-4
Thinking about all of those lives that were lost 9/11/01 and all the heroes of the day. God Bless Each and every one.
Wednesday, September 10, 2008
At 6:45, I was awakened by my husband who kindly reminded me that I had to get up. For some reason I thought I had to wake up at 7:00 to leave at 7:30, but the truth of the matter was that I had to be up by 6:30 to leave by 7:00. Ooops. So I stumbled out of bed to brush my hair, teeth, and toilet (and no I didn't BRUSH the toilet). Then I scrambled to find clothes to put on. Then, I gathered all the necessities for the day. I always have to take Benedryl & Molybdenum with me, something to eat, my new PICC line dressing and something for entertainment. When we first began IV treatments, I purchased a portable DVD player to use for treatment time so I wouldn't be bored out of my mind. By 7:05, we were both out the door and on our way. My husband drops me off the doctor's office around 7:45. I sign in for the treatment which basically says that I accept any treatment they will give me and that I won't sue the pants off the doctor's office should something go wrong. I set up all of my things in the IV room and wait patiently for my appointment to begin.
My PICC line is assessed by the family nurse practioner and my new dressing is applied. Let's say this is never a pleasant experience, but in the last week I have had it changed 9 times so this time was particularly painful. For reference, the dressing is usually changed once a week. I have a problem with my PICC (specifically with the stuff they use to clean the area) so I've had a lot of blisters and oozing to handle. While this is being done, the RN is mixing up the first bag for my treatment.
By 8:40, I am sitting in the IV room with other patients. I take my 50 mg of Benedryl and my drip is started. I remember saying "I didn't get the full treatment." To which my nurse replied, "Oh we forgot to get your water." No they forgot to take my vitals. :) So my vitals were then taken (and I'll spare you the I only weigh 95 pounds and my great blood pressure and all the other details that are in my IV chart) and I began to watch Mr. & Mrs. Smith on my DVD player. The first bag really does nothing, but make me a little sleepy, but in retrospect it is probably the Benedryl kicking in. I call my husband to let him know the approximate time of ending just in case I fall asleep prior to the 3rd "bag" starting.
I begin to eat my lunch (early I know, but I knew I'd be asleep for real lunch) which consisted of a ham & cheese bagel and applesauce. I also took my Molybdenum 30 minutes after starting the 1st bag. Around 10, the first bag finishes and I clamp off my IV. Shortly afterwards, the RN arrives with 1 bag and 1 bottle of meds. If I was using a regular IV, this 2nd bag would cause the most pain. Prior to the PICC, this m ed would take 40 minutes to complete and I would spend the entire 40 minutes holding my arm, closing my eyes, and popping pain meds. However, because I have a PICC line, I do not feel this drug rushing through veins so the time is 20 minutes, with no holding arms, no pain meds and I finish watching the episodes Grey's that I had started during the 1st bag. I know that shortly I will be sound asleep.
Twenty minutes after this bag finished, the RN switches it to the bottle of meds. The 3rd bottle looks like a bottle of Mountain Dew. The 3rd bottle is so difficult that if they put it in a bag, it would eat through the plastic. Imagine what it is doing to my body and the bacteria in my body. I quickly call my husband b/c shortly, I will not be with it at all. At the beginning of this treatment, I freeze. I shiver and feel like I am going to throw up. I never do though. I remember my nurse always asks me if I want a blanket, but I never do because I know shortly I will be burning up, hurting and not wanting anything to touch me at all.
From this point on is quite fuzzy. I remember my nurse getting the supplies I would need for a home IV infusion, I remember my husband arriving to the doctor's office and I remember getting in bed. My husband said we arrived home around 11:30 and that I stumbled my way to bed. I slept the whole way home moaning in my sleep of what my husband can assume is that I was in so much pain that moaning was my way of coping with it. Fortunately, I do not remember the pain. So I slept from 10:30 to 6:45 only interrupted once to to go to the bathroom and get some water. I would not have woken at 6:45 except my husband returned home from work and wanted to ensure I was alright. So I stumbled out of bed at 7:00 to go to the bathroom, drink lots of fluids and eat some dinner. I got online for about an hour to check in on some friends, chat with an old friend, and then I decided that I needed to get back to bed.
I'm not sure what time I fell back to sleep but it was in the 8:00 time frame and I woke up at 3:45am. Sooooooo
What this boils down to .. is that on 9-9-8, I slept from 10:30am to 3:45am on 9-10 with maybe a total of 90 minutes being awake. THAT IS CRAZY. I did lose my whole day. For the record, I barely remember any of Monday or Tuesday. I am glad I wrote this at 3:45 because I would not remember it.
Today, I felt wobbly all day. Like the world was going at 65 mph and I was stuck going 5mph. I am finally feeling a little bit "normal."
Sooo Sooo weird. Hope you "enjoyed" peeking into the day in the life of my treatment.
Stay tuned tomorrow for: How did I get diagnosed?
Lyme Disease can cause flu-like symptoms, joint pain, muscle aches, fatigue, headaches, rashes, muscle twitches, sore throat, sensitivity to lights, seizures, ringing in the ears, diarrhea, abdominal cramps, sweating, heart pain, poor balance, dizziness, mood swings, sleep deprivation, over sleeping, memory loss, speech difficulty, reproduction & sexual dysfunction, low body temperature, continued infections, increased allergies, and many many more.
I have had many of those symptoms on the list above and even some that I haven't listed.
These are some of the best websites on Lyme Disease and the last one is a newsletter for tick borne illnesses and other public health issues.
Next up: How did I get diagnosed?
Tuesday, September 9, 2008
Well after over a year of oral antibiotics and some nutritional IV treatment, I was not getting well. In fact in some ways, I was worse than when I started treatment. There were many things that improved though. One day back in April of 08, I began to feel very sick again. I was hallucinating (sounds and visual), feeling dizzy, passing out, and other things that I am having trouble remembering. It was a very low point for me. My husband rushed me to my Lyme Physician so he could see how very badly I was feeling.
It was at this point that we all knew that we had to do something different. Insanity is doing the same thing over and over again expecting different results. I was presented with an experimental option that my physician had just started after he had seen success with another patient. He told me to sleep on it, pray on it, research it and do whatever I had to do in order to make this decision of whether I wanted to do this treatment.
I made a phone call to this patient of his, googled until my fingers felt like they were going to fall off, but most importantly ... I dug deep within my soul and prayed like I had never prayed before. I had a decision to make and though it did not have to be immediately, I felt like I needed answers. How could I make a decision about a treatment that I couldn't even find on google? How could I decide that I wanted to place my life in the hands of a doctor that I didn't even know existed two years before? So I did what I was taught when I was little .. I opened up the red book with gold edges that had my maiden name written on the front from 1987. I opened up the Word of God, took a deep breath and prayed that my answers would be found in the depths of the Bible.
I flipped with my eyes closed ... I opened to one page and like a kid with a map .. put my finger down. I discovered this:
"Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things."- Philippians 4:6-8I focused on the first line: "Do not be anxious about anything." I knew my answer. I had to do this treatment. I am doing what is known as the Antimicrobial Therapy. I started off going twice a week to get this treatment and then it went to once a week. Now I am going once every three weeks. The treatment is difficult. The first treatment my husband had to carry me out of the office to the car. I don't remember. I sleep for most of the day which is probably good because if I were awake I probably wouldn't feel so good.
This treatment is killing Lyme, Bartonella, Candida, and other things that I probably have that I just don't know about yet. I have had 9 treatments so far. How is it working? I will tell you that last weekend was the best weekend I have had in years. I know it is doing it's job and I just have to tough it out. Today is one of those treatments for me. I will be starting around 9am.
The nurse gets all the bags ready (3 in all) and infuses them into my PICC line. Now that I have the PICC Line (an IV that stays in my arm until I finish the treatments), life is much easier and harder at the same time. It's easier because it takes 2 hours to do the treatment. It no longer burns my arms and it goes straight to my heart. It's harder because my day to day life is much more difficult with the catheter. However in the end, it will be worth it.
Stay tuned: for PICC: the good, the bad and the ugly.
Monday, September 8, 2008
Lyme Disease reacts differently in each person and there can be a multitude of symptoms. Some people infected with the Lyme bacteria have over 75 symptoms. Most people associate joint pain with Lyme Disease, however not everyone has joint pain. Also another marker of the disease is a bulls eye rash near the site of the tick bite. Again, most people do not get the bulls eye rash or it is in an area where it can not be detected (scalp under your hair). Because the bacterium multiplies so quickly, when the bacterium is killed it creates toxins which make the patient feel worse on antibiotics.
There are two types of physicians that treat Lyme Disease. It is a very controversial illness and the two types of physicians believe different things. One particular group of doctors believes that long term antibiotics is not the answer. That if you are on antibiotics for more than a month and still have symptoms that you have Post Lyme Syndrome. The other group of doctors believe that if you have symptoms of Lyme Disease (or any of the other tick borne illnesses) that you still have Lyme. Most Chronic Lyme patients side on the group of doctors that believe in long term antibiotics.
Sunday, September 7, 2008
For those of you that don't want to click on that link, this is a charity event that is being hosted by Nathan and Tricia Lawrenson. Nathan and Tricia are amazing people that I have had the privilege of meeting twice. The first was at a Great Strides walk in Cary, NC and the second was at the church I attend C3. The "short" version is that Tricia has Cystic Fibrosis. If memory serves correctly, the day before Tricia was to leave her home to go to Duke Hospital to prepare for a double lung transplant ... she found out she was pregnant. This took them on a journey this last year of many miracles.
In January, Tricia had her miracle baby named Gwyneth Rose (a micropreemie) and on her husband's birthday in April ... she was granted her second miracle of the year. She received her lungs. Last year, Tricia and Nate started a Great Strides walk in the OBX (Outer Banks). So when I heard about this couple in December of 2007, I knew that my life would be changed forever. So, I am going to the Great Strides walk this year in the OBX. So between relaxing with my husband on the beach (sans Hurrican Ike) and the Great Strides walk, I am super thrilled about this upcoming weekend.
There are a bunch of small things that I have planned, but the other huge thing does not happen until the end of the month. The North Carolina Lyme Disease Foundation is presenting this documentary on Lyme Disease called Under Our Skin: The Untold Story of Lyme Disease.
I have purchased two tickets to see this wonderful documentary and prior to the beginning of the movie, there is going to be a rally for patients, doctors, and supporters of those with Lyme Disease and other illnesses (such as Autism) to help support those doctors that treat these illnesses. It's going to be a long day for me so my prayers are that I will be able to stand with the great Lyme Literate Physicians and show my support as they have supported me over the last year and half and countless others over their lifetime. I also get to meet others facing this illness and rumor has it that there is going to be a new website announced at this rally as well.
I'm so psyched. :)