Surprises

I'm not a huge fan of surprises. I do not like to discover things suddenly and unexpectedly. That's not to mean that surprises don't have their joys, but generally speaking I am not a huge fan of them. I guess I have this image in my head of a room full of people waiting to yell "Surprise." The unknowing culprit about to walk into the room where the room full of anticipation is growing. The air in the room sucked out of by the people holding their breath trying to be very quiet .. just the whole thing makes my heart palpate.

Then there are the whole other kind of surprises. You head out to a friend's house and they announce to you that you're going to have "Pineapple Surprise* " for dessert. You enjoy your dinner and then begin to dig into the dessert. Oh it is the best thing ever. You ponder what the "surprise" is that makes it so tasty. Ten years later you find out ,that *surprise*, there was absolutely nothing extra special in the Pineapple Surprise Dessert.

Of course there are the little surprises of life along the way like detours. Now that I have the GPS, these surprises go over a little easier. But I would rather not have these daily surprises pop up on me. I think it all has to boil down with change. There have been a few good "surprises." Like the time that my husband surprised me by bringing home a "new" type of Mozzerella Cheese Stix. Now, I am one for consistency. I'm a consumer of cheese. I have great expectations and generally stick to the same brands. I wasn't expecting to like it, but surprise I did. Then there was the time I even surprised myself by climbing Cape Hatteras.

After a decade of Lyme Disease, nothing should surprise me regarding my health. However, it does. And I don't like it! Last night I went to bed and felt a pinch of pain in my lower back. Then it migrated to my shoulders and as if that weren't bad enough I woke up with a twisty writhing pain in my hand. I turned the light on and realized my hands were swelling. I removed my wedding rings and tried to rest through the writhing twisty pain in my body.

It also feels like I worked out too long with a bookbag full of 50 collegiate books on my back. I remember feeling this way every day for years. I forgot what the pain was so I was completely surprised when I felt a twinge last night. I'm not a huge fan of surprises.

Making Plans

I've always been a planner. A list maker. No matter what I've done, there has always been a plan. Sometimes a written out detailed list of what was going to happen. Times, places, people, things I need to take with. Even if there wasn't a written list, there was a list in my head. Almost constantly. Then, I got Lyme.
I'm not sure if Lyme made it worse or better. I'm constantly thinking of times, places, people, things I need to take with, but I'm also more apt to be a little more spontaneous though .. also a little more stringent in where I go and how late I am out.

Typically now a days, I don't make concrete plans anymore. It's partially to do with how I never really know how I am going to feel on any given day. But, it's also partially to do with how I have been disappointed over the years in others that break plans. However because of Lyme, I think that I've learned to "plan for the worst, but hope for the best."

Case in point: One of my close friends is notoriously bad for standing me up. She (oh that got you guys to thinking eh? I hardly have any female friends) has so much on her plate that she just fails to remember she's made plans with me. This person doesn't have children. This person doesn't have a husband. She's just busy. ALL the time. It used to really bother me. Who am I kidding, it still bothers me. I haven't seen this person in over a year. In fact, I may have only seen this person one time since my Lyme Diagnosis. This person simply overplans. This person will make plans with about 10 different people in a day and when she gets overbooked with things to do, I'm the one that gets cut lose. That stings just a little. Every time she plans to visit, I think "Oh she won't come." Now I say 99 percent of the time, she does not come. Can you imagine the elation I feel the 1 percent of the time, she actually does show up? It's huge!

Well I don't like to disappoint people like my friend disappoints me. So instead of making firm plans anymore, I just pretty much have reigned it to say we'll have to see closer to the time. Before I would have jumped in with both feet already having a list of things I'd need to do to be able to do said things. This week was a tough week. A very tough week. One of the toughest weeks I have had in a year. Outside of work, I did two "spontaneous" things. However, imagine if I had made plans for those same items say on Monday. The day I wound up at Urgent Care having a shot of Cortisone slammed in my rear end muscle and slept for 3 hours upon arriving home from said shot. I would have disappointed people which would have disappointed me.

In October, I have two set in stone plans. This kind of scares me. No matter how badly I feel, I will more than likely go to both set in stone plans ... especially since the first event cost me a great deal of money to attend. Doesn't help though that I had such a "bad health week" so close to said event. What if I'm so exhausted I can barely keep moving? Fortunately I have people in my life that push me through the worst part until I can actually collapse from fatigue.

The other is that in the first event, I have people there that understand what I have been through and know where the nearest ER is just in case. ;) Even though I won't need it, it does help knowing that it's available. I used to not worry about such things. I'd go on vacations and not even think where is the nearest Urgent Care or ER. Until I got Lyme. Then I'd constantly ponder such things. We (hubby and I) go to the beach and when we pass the hospital on the way to the hotel, I always point it out. I've (knock on wood) never needed them, but still nice to know that they are there.


I imagine by the end of October that my body is just going to collapse. I just wish that most people got it. That most people understood. I get invited to a barbeque. Can I go? I just don't know. And I won't know until that day. It just depends on how I feel. And if I do go? I won't eat. And they'll be offended. They just don't get it. Then it gets to the point where people just don't invite me anymore. That stings too.

Guess that's what is on my mind lately. Making plans, breaking plans, wishful thinking that Lyme could disappear to the point where I could start having a life on Friday and Saturday nights that don't include a mattress, pillow and a blanket. (aka Sleep)

Quiet Month

I was once asked how I balance blogging, family, work and illness. Well this month, it's been very quiet. I've just been way too busy to really think about the blog.

Between preparing for work stuff, doing family stuff, surviving an allergic reaction and dealing with Prednisone fall out, the blog has been the last thing on my mind.

Hope you all didn't miss me too much.

The Shot I'd Never Get

For the past three & half years, I pretty much swore (except like MckMama, I don't) that I would never ever get a steroid shot. I have gone to the Urgent Care on a number of occasions and they've written me out oral prescription for steroids along with suggesting a shot of steroids. I have always denied. I try to tell them why, but they look at me like I have five eyes. There is widespread thought by Lyme patients that steroids can cause a severe increase of symptoms. I for one am intrigued by the thought because I myself had oral dose of steroids and it was shortly after that when the straw broke the camel's back. Coincidence? I'm not sure. One thing I was sure of was, "That's the shot I'd never get."

Well Saturday morning, I woke with a tiny bit of itching in my left ear lobe. I thought it was odd, but then again I am prone to itching. I'm also prone to mosquito bites. So I thought maybe a mosquito had entered the house and bit me in my sleep. Well as the day progressed, the ear became more and more inflamed and itchy. Slowly, both ears became itchy. Last night I slept a total of 60 minutes due to the itchy nature of my ear lobes. Also in the middle of the night my arm started itching. So I went to work because well I love my job and this is a huge week for us and at some point I felt like just chopping off my ears they were driving me absolutely bonkers.

So once I left work for the day, I drove straight to Urgent Care. I was hoping that the words steroids would not be mentioned, but honestly I expected it. Went over my symptoms, my medicines, my surgeries, my allergies and waited. Then the doctor came in. After we had a few minute discussion, he determined that I *must* be having an allergic reaction to something (duh). He immediately started talking about the oral pred pack and then he said the words .. "The nurse will be right in to give you a shot. It will clear that rash and itchiness right up." I gulped and decided that I couldn't tolerate one more day of this itchiness and gave in to the shot. OUCH. For about 10 seconds, I forgot about the itchiness because my butt hurt so bad that I couldn't focus on my ears.

I'm praying that this doesn't screw up my Lyme progress. I just couldn't take the itchy swollen ear lobes anymore.

PS. My ear is less swollen and less itchy. I took 12.5 mg of Benedryl to try to get the itching to ease off even more. The problem is that the shot can cause "restlessness." The special place where they inserted said shot hurts as well. OUCH. So between the ouchy and the restlessness and the slight itchiness ... i'm behind in sleep again tonight. However, I did get a couple of hours this afternoon right after the shot was given. Even though the area was painful, I was so exhausted that I just passed out as soon as my face hit the pillow. Just in case there was some allergen in my sheets, I put on new sheets before hitting said pillow. ;)

The Cold that Almost Was

The Cold that Almost Was by Jennifer The Lyme Patient

Once upon a time a beautiful tired Queen woman woke up with a very sore throat. The tired woman knew that this was a sign of things to come as this had happened a multitude of times before. In previous months, the woman would wake with the sore throat and a snuffly nose. Within days of this occurrence, the tired woman would begin to cough. Within 5 days, the beautiful tired Queen woman would wind up with pneumonia, bronchitis or sinus infection.

A few years ago, the great and powerful wizard gave this tired woman a bottle. This bottle contained magical drops that appeared to fight off powerful bacterial and viral infections. The tired woman also had a case of amnesia forgetfulness when she would awake the very first morning with sore throat. The woman would forget the drops existed.

Well five days ago, the tired woman woke with a very sore throat and she felt a slight dripping in her nasal passage. This time was different however. The health spirits were with her on this day and she remembered the magical drops in the tiny bottle. So she walked over and opened up the bottle dripping 10 drops of the magical juice into her mouth. The next morning she awoke expecting to have a stuffed nose and a slight cough, but instead only had a small sore throat.

Excited about the prospects of not going through cold turns to something really bad, she again took 10 drops of the magical juice. By the next morning, the tired woman felt pretty good. There was no sore throat, no stuffy nose and absolutely no coughing. The woman decided to take 5 more drops of the magical juice. And that is how 25 drops of magical glory gave this woman health instead of the Cold that Almost was.


****

That was 3 days ago. I feel fabulous. Now, there is a small chance I'll actually get a cold that turns into something more dastardly, but for now ... I'm thrilled that 25 drops fixed my cold that almost was.

Quick Update

This is going to be a scattered update:

1. LDN: Last week I decided to take one night of 1.5 mg. That 1.5 mg night through my world into a whirlwind. My left knee hurt so badly that I pulled out the CMO cream and used it three days in a row. I also pulled out the knee brace and not only wore it at home, but wore it to work as well. I decided though to not skip a night, but just the next few (well 5 or 6) nights to take the 1mg LDN and hope that things improved. They did so last night I took another night of 1.5 mg. This morning so far is "okay." No particular pain, but my throat does hurt a bit and my hands are a bit swollen. We'll see how the rest of the weekend goes.

2. My hubby is about .2 pounds above where he *should* be, but by tomorrow he'll probably be back down to within the 4 pound range. He struggled with having free reign and has now a plan implemented that includes medical shakes and the traditional 500 calories food which should give him 1500 calories a day. We'll see how this work. Then once he's stablilized he'll probably add in some other things while removing one of the shakes. It just seems like it will be easier this way for him.

3. In other news, I went to get him a new pair of pants last night. Now all of his pants were about 38s .. I wasn't sure exactly what to get him so found a pair of 33's in his pant length and came home. They fit almost perfectly. We only got him one pair because honestly he doesn't wear dressy dressy pants that much. These will be good for church or for interviews or such. Then we went out to buy a dressy l/s shirt. Now his "biggest" shirt neck sized was 18. The new one we bought was size 16. Woo hoo.

4. We'll probably pack up all his "big" clothes today and take them to goodwill at some point. Maybe even take cash with us to see if we can find some Wrangler Jeans in his new size or some dress shirts. It's time.

5. One of our dogs has been "hurt." For the last couple of months, he's been acting funny. He's been yelping and we went to the vet about a month ago. They gave us some medication to help with the pain and were hopeful it would take care of the problem. Well once he was off the medication for a good number of days, he would start acting funny again. Lethargic even. So we went back and asked for an Xray. Though we were certain he didn't break anything, he had starting limping often. The good news is that there were no visible breaks, cancer or arthritis. So more than likely it's either a pinched nerve .. or my thoughts .. LD. Though Rob disagrees. Told him he was acting like a MD and laughed. ;)

6. Remember all those that serve this country whether it's the military, fire fighters, police officers, pilots, teachers, ministers, volunteers. Pray for them. I can't believe it's been 9 years since the gasp was heard around the world.

Day 42 of the CD

If you recall, CD stands for Crazy Diet. Here is what I wrote about it on July 25th to jog your (and my) memory.

****
But in addition to some specific medications that were prescribed by my crazy doctor, my husband is going to be having 2 days of crazy fat foods. He's to eat burgers, cheeses, carbs, ice cream, and whatever else he desires that has high fat content. THEN, for 40 days he can only consume 500 calories a day along with these prescribed things that I don't want to get into. It surely will be interesting. My doc's first patient is someone that works in his office. He's completed the 42 day CD and he's been in the maintenance phase for a while too and he's still within 2 pounds of the last day of his diet.

****

So the big question is, "How did we do?" Honestly, I have to admit I was a tad bit skeptical. Most docs only recommend losing a couple to 3 pounds a week much less 34 pounds in 42 days. My husband has tried to lose weight before and with varying degrees of success. He actually lost about 25 pounds a while back, but then gained almost 1/2 of it back with vacation and the loss of my grandfather. How did he actually do? I'll admit. He did a fabulous job. There were some cheat moments here and there, but did he meet his goal? Did he lost 34 pounds in 42 days? I'll let you ... tell me!


I did crop his face out of this one just because he thought his face was kind of silly, but it was the best photo of the bunch to show off his new physique.

Now for the facts. He did indeed meet his goal. He's lost 34.6 pounds. His BMI went from around 33 percent to around 25 percent. I created a chart of foods. In this chart, I typed in every food he ate along with his weight every morning. It was a fairly simple chart in which I also included any "cheat" foods he ate. He had his own more complex chart he filled out every day as well which included his BMI and any exercise he might have done.

I also had a measurement chart. On the day he started the CD, I took measurements from his neck, chest, stomach, waist, right arm, right calf, right ankle, right thigh, hips, etc. Then every once in a while, we'd remeasure to see how things were progressing. We saw how things were going on the scale, but this really was the indicator to me that things were working. I won't put the actual numbers due to the embarrasment factor, but I will put the "loss" number.

Neck: Lost 1.5 inches
Right Arm (bicep area): Lost 1.25 inches
Chest: Lost 5.5 inches
Waist: Lost 4.75 inches
Stomach: Lost 5.75

Hips: Lost 3.75 inches
Right Thigh: Lost 2.75 inches
Right Calf: Lost 1.25 inches
Right Ankle: Lost .75 inches


Where do we go from here? Well for the next three days, he will stop the medications and continue the 500 calorie diet. Then upon that milestone, he will pretty much be able to eat whatever he wants minus Carbs. The goal is to stay under 1500 calories, but we really won't be counting. He just has to watch the scale. If he loses or gains 2 pounds, then he has to recalculate what he's eating to maintain where he is today. We'll see the doctor again soon and see how much further he has to go, but we're thinking it's about 15 pounds.

I am extremely proud of my husband. He went from fitting comfortably into a XLshirt to fitting comfortably into a MEDIUM shirt. The orange shirt above was even a size Small!

June 16, 2007

I just found this old journal entry I wrote on June 16, 2007. I am LAUGHING at it myself now because I realize this was the beginning of the transformation of "don't care how I look Jennifer" to "I can wear a dress just because I want to Jennifer." And today .. Man I feel like a Woman!

****'

Those of you that know me in person know that I am NOT into making myself look Glamorous. I couldn't care less if I was wearing sweatpants to meet the Queen of England herself. I couldn't care less if I was wearing work out clothes to meet Marty Casey (okay maybe I could care about that one). I am NOT that person. I did not have someone special "Do" my hair for my wedding. I did not have someone special "Do" my make up it either. I threw it up in a bun like any other day and ran with it!

So WHY am I going NUTS over a stupid banquet? I feel like one of those high maintenance chicks that goes nuts over hair and make up. Do these shoes go with this dress? Could I wear this ring with that watch? I spent TWO HOURS straightening my hair. How many of you think that anyone will notice? AND now I'm worried about a handbag. Here is is with almost an hour to go and I'm just now thinking ..my purse won't match.

I can thank my parents for sending me to Barbizon because if I want I CAN actually do my make up.

I don't know if I'm hearing "Glamorous" in my head or "Man I feel like a Woman" by Shania Twain. And you guys know that I despise country music. Fortunately for all of you, you won't see me look like this! I feel like an impersonator of someone else. I don't feel like Jennifer! I feel like ... (insert anyone you know that wears a lot of make up and dresses up high maintenance).


***

Here it is three years later and I no longer feel like an impersonator, but I still refuse to wear make-up (on most occasions). I can't believe I spent two hours straightening my hair though. Though it was quite long at that time so quite possibly it did take two hours.

5 nights 1st time

I did 4 nights of 1mg LDN. I was a little encouraged by my lab work so I decided to push the limits of my body again by doing 4 nights in a row of the 1mg. I had only a small remnant of a headache yesterday and decided it was worth the risk to take it the 4th night. Depending on how I feel today will depend on if tonight if only a 1/2 OR the first ever 5th night in a row.

And yes this means I did get the results to my blood tests back. I can't exactly explain them. I feel like I should be an expert in Lymph Enumeration by now (all those numbers CD4, CD19, CD56, etc.), but I am very much a novice. I wish I knew which ones held which job in my body and why some of them raised "300" points since last time and others either stayed the same or raised only a slight bit. However, I'm under the impression that we want those numbers to rise and most of them did. So I'm pleased as punch over that.

** decided to go ahead and take that 5th night of LDN**

SO long 4 nights

My headache has continued so last night I skipped the LDN. I will go back to the LDN rate where it didn't give me a headache which was 3 days at 1mg and 1 day at .5mg and then try again with the 4 days. This is per instructions given to me at my LLMD the last time I was there. Keep pushing it up until my body tells me to stop (which is the beasty headache I have had for the last 48 hours). I don't even know how I functioned yesterday at work. Today the plan is to rest as much as possible as tomorrow I have a very exciting baby shower to go to.

Speaking of baby showers. A coworker had her baby a little over 3 weeks early. Mom & Baby are doing well. It means I will get some hours at work at least for next week so I'm excited about the money aspect, but a little scared in how I'll be able to function. I know I will be just fine though. Always am able to do what I have to do when I have to do it until I stop, then I collapse. (which is what is happening today. I did what I had to do last week and then finally stopped)

Four Nights

I made it Four Nights of 1mg of LDN. I had a headache all today though so back to 1/2 mg tonight. It's the longest I've ever taken LDN back to back at 1mg. I'm hoping next time after night 4 that I won't have the headache and I can move up to night 5. It's moving slowly, but I've come so far from the 1/2 mg every other night.

Relief and Laughter

Relief: Got my blood work done today and it went well. She listened and it only took one stick. There were only two small vials that were needed.

Laughter: So I got this letter today in the mail.




Don't see the part I about peed myself laughing? Allow me to show you ....




I mean I know sometimes I feel 65, but I had no idea I was "turning 65" anytime soon.

Mom did you know you had a 65 year old daughter? Great feat being that you're not even that old!

Decisions and Frustrations

First things first:

I decided to go to WCU for Homecoming instead of my HS reunion. There were several factors involved .. including a pro-con list (I'm so OCD sometimes).

Frustrations.

The words you never want to see on the blood work is:

Specimen clotted, unable to perform test(s).

In laymen's terms ... I have to get stuck again. I did get results for my Iron and Vitamin D levels though. Both are significantly improved. One is in normal range while the Iron is way above normal. I'll find out what that means at the end of August. I'll go tomorrow to get the rest of my blood retested.

What a dilemma

Wish I could do a poll on this thing.

Oh what's to say I can't?

Western Carolina University Homecoming OR 15 High School Reunion?

I've been looking forward to both, but they are on the same day.

I know which one I'm leaning towards, but what do you guys think?

LDN Update

So at the end of May, I began the LDN. It was when I had begun 1 mg. Once I had taken 3 days of 1mg LDN I had a horrible headache. Since the first few days of June, I have been gradually increasing my doses from .5mg every other day until I was able to take .5mg every day. In the last week or so I have been able to take 1mg every other day and then the past two doses, I took 1mg two days in a row and then .5mg of LDN. Well tonight will be the first time I've taken 3 days of 1mg LDN since I began my regiment. I have no lightheadedness or headaches tonight so I'm hoping I'll be good to go tomorrow.

This is a very slow process, but I'm actually going a bit faster than I thought originally. I never went up to get my lab results. I think I'll stop by one day this upcoming week to see how my NK cells are doing. I'm feeling "okay." I've been a bit fatigued, but that's really been my only big symptom in the last week or two. I had a couple of days of jaw pain and leg pain, but it went away fairly quickly after onset.

Ever wonder what this LDN looks like? Well every compounding pharmacy makes it look different, but this is what 1mg from my particular pharmacy for me looks like:




In order for me to take it, I must open up the capsule and put it in something I can eat.



There ya go. 1mg LDN in a spoonful of Applesauce. If I want to take .5mg then I open up the capsule and figure out 1/2 of it. It's not precise, but it's the best I can do. I just took my 3rd night in a row of LDN and now it's time to hit the bed. I typically take it around 7:50 and hit hte bed by 8. Tonight I took it a bit later and I can already tell the difference.

My heart is racing, but shortly I should be asleep and won't notice it.

Still alive

Having major writer's block, but know that I'm alright and still living!

Raw(e) Lamps

Straight out of the camera from Sailor & Company is always fun. I never edit my photos anyways so it's easy for me. This week's theme is LAMPS.

This was from the Dunes Village in Myrtle Beach. Want to join in on the Raw(e) Lamp fun? Join Sailor & Company. :)

Yah Slick

"Slick" drew my blood in one stick. Glad they didn't need a lot of blood though because after four vials my vein decided it didn't want to release any more. Hopefully they got enough for my blood work.

Lots on the mind

I have a lot going on in my mind. It's been very difficult to think clearly when my mind is so full of many things. Some are fun things to look forward to and some are not so fun things that bring about worry.

I'm going for blood work tomorrow. I'm thinking about how much I've done in the last two months to improve my numbers. I wonder if it worked. I worry about things that I have no control over so I am trying to let it go until there are answers.

One of my best friends from Middle School is having a baby. I'll be seeing her for the first time in years at the end of the month. I'm excited about that. So I'm trying to focus on getting to that moment through this month where lots of things are happening.

My poor dog is hurting. I don't know what is causing it because he is yelping doing different things. Got an appointment with the vet after my blood work tomorrow to see if they can give me answers.

Answers. Questions. Questions. Answers.

I just have lots on the mind.

Channeling my Inner Cowgirl

On Monday, we have a theme for dressing up. Sometimes we're asked to wear a specific color or wear clothes of our favorite teams, but on Monday we have something that I was either going to be silly about or not participate in. However, we found out that our big Vice President was coming to the school so we are all required to dress in Western Wear ~ aka come in wearing Cow Girl Clothes.

Well, I'm not one to do things 1/2 way. So we went to Good Will and found this awesome hideous shirt & vest. Then they had a pretty awesome hideous belt and shoes. In all, it was about 13 dollars for a pretty good cow girl outfit. Well, we decided to hit up Wally World to see if we could find a pretty decent cow girl hat and bandanna. Well, we did and when I got home I found my best pair of jeans country western pants. I put it all together and channeled my inner cowgirl. :) All in all, it cost 24 dollars to channel my inner country western look. How did I do?