The Snowglobe

SnowglobeLately, I have been struggling with the fact that my life has changed. When I first started treatment for Lyme disease, my mindset was that I get through this. I was willing to put in the time. I figured a year would be sufficient. I tested CDC positive for Lyme; I tested negative for the big 3 co-infections. Assuming that the results were correct, I set my mind to healing.

I still worked but my boss gave me the utmost flexibility to leave as needed and/or take absences as needed. I didn’t attend as many social events. I tried to get my proverbial plate as empty as possible. And, I made progress. I did. The backaches subsided, the intense daily neck pain finally went away, the migraines became less frequent, the exhaustion became manageable. All of this was great. Then, I guess I hit a plateau.

So, here I am. I am not 100%. Honestly, inside I feel about 40% of my old self. Outside, I think people actually see me as almost 80%. I am a great faker and a great lier when it comes to the presentation of myself to the outside world. I am sure this is the case for all of us with a chronic disease. But since school started this fall, I feel like I am backsliding. The extreme exhaustion is creeping back in.

I have started seeing my my life from the outside. It is a weird feeling. Does anyone else have bouts of this? I don’t think it is disassociative disorder, but maybe just parts of it. Sometimes, in order to get through the day and what it entails, I separate myself from my physical body. Creepy! No, not in a creepy way! When I do this, I feel like I can make it. It is as if I am managing my symptoms from the outside with less attachment to the pain and whatever discomfort is going on at that minute. The problem is though that I have been doing this for a few weeks now and it is starting to feel like I have two different lives. I just don’t know how to explain it well. Really, though, does anyone else have this going on or something similar?

It’s almost as if, when I do this, the separation, that I am looking at my life and my actions in a snowglobe. Sorry, it’s the best analogy I can think of! 🙂 I am guessing this is a coping mechanism the brain sets up. However, I just don’t want it to become a rabbit hole. Also, I am concerned that this snowglobe effect will become a crutch in the sense that at this point in time, I am not dealing well with the fact that I am now 19 months into treatment and I have hit a wall. Like everyone else with Lyme and chronic disease, this wasn’t my PLAN!

I am hoping all of you out there are having better days than not. Drop me a comment in regards to this thing I have going on with me mentally if you feel comfortable doing so. I appreciate any and all comments!

Happy weekend, pumpkins – B

Irony or Fate?

Hello out there! Here’s my story for today:

We now have a new insurance; it usually changes every 2-3 years. However, now I cannot have my labwork done at my doctor’s office. I can only use a certain lab that is not available there on location. So, I had to find a lab I could use in my area. Done. No big deal. I had my visit with my doc Thursday and headed to the lab on Friday after work.

I know the medical building where the lab is located because it is in the area, and I have been there before to see another doctor of mine. As I exited the elevator on the 3rd floor, I looked to my right first to see if the lab was on that side of the hallway. BAM! The name if the Infectious Disease doctor I saw before being correctly diagnosed with Lyme Disease, was glaring at me. I started to swell with anger. I wanted to march in there and punch him in the face. Really! I said out loud, “You have to be f***ing kidding me!”. Luckily, no one was in the hall to hear my sailor mouth. My mind started swirling with all kinds of thoughts from that visit I had with him over 19 months ago.

When I was was referred to him by my PCP, it was a last ditch effort on her part. She is my family doctor, and both of us had been trying to get to the bottom of my fatigue, sleep disturbances, nausea, back pain, etc. for the past 3 years, I was in her office about every 4-5 months with symptoms, the worst was the crushing fatigue and every time, I tested positive for an EBV infection. I had been tested for everything and probably twice such as Lupus, Rheumatoid Arthritis, Vitamin D, infection, Thyroid, you name it. For the joint pain and numbness in my feet, I had seen an orthopedic doctor and a neurologist and had had a spinal and brain MRI. Nothing. After about the 5th time testing positive for an EBV infection, I was referred to the OD doctor. What was causing the recurring EBV? All my blood tests for the past 3 years were sent to him as well as any of my medical record from my PCP. He had my whole life in his hands.

By the time I headed to his appointment in the early spring of 2013, I was a complete mess. I was so exhausted, I could barely make it through the day at work. I was in pain much of the time. I was having headaches of which I had never before in my life. I wasn’t sleeping well, I had severe neck and lower back pain, shoulder and hip pain, stiffness, indigestion, nausea, you name it! I also was worried. By this point, I had been ill off and on, with symptoms cycling and becoming worse for the past 3 years. I knew something was really wrong. My PCP had been talking about Fibromyalgia and Chronic Fatigue Syndrome but she wanted to rule out any other options and so I had my appointment with the ID doctor.

Now, I am no sissy pants. I take things as they come, and I am a problem solver. I have always had a crazy awesome work ethic, and I take pride in what I do. At many junctures in my life, I was working 2 jobs. I exercised, and I was social. But in the past year for sure, a lot of that had changed due to my health. I looked forward in a way to this doctor visit because it would assumingly help rule some things out and perhaps even help me find an answer. Let’s just say, I had a lot invested in this visit, and I had faith in my PCP’s referral to this ID doctor.

It was the worst doctor visit I have ever had in my life. Literally. The doctor came in and began asking about why I was there and my symptoms. I explained the EBV activations. He stated several times that EBV is not recurrent and that the odds of this happening were slim to none. Ok. I asked about the blood work showing the EBV infection. Oh, your doctor didn’t run the correct labwork. Everyone shows “exposed” to EBV as mono. Ok. As far as my exhaustion, I needed to relieve some of the stress in my life. Really? For my daily horrible headaches, which I never experienced before, Drink more Water. At this point, I am starting to get aggravated, as much as I can in the exhausted state I am in. For my neck pain? Well, well, you are a woman, so I am sure you carry your purse to one side. Maybe you need an MRI? No, doctor, I just had an MRI this past summer and nothing, NADA, showed up. Lower back pain? Hmm. Right hip pain? Go back to your ortho doc. This went on for about 30 minutes. For every symptom, he had an answer and a stupid one. By the end o the appointment, I was even more confused, angry and emotional than I had been walking in. At the very end, I asked about the soreness all over my body. He pushed on some pressure points and said, Yep, you probably have Fibromyalgia. I asked for a doctor referral. He told me he would not refer me and that I had to go back to my PCP for a referral. OMG!! WTH. Are you kidding me?!?

I cried all the way home. From sheer exhaustion, from getting no answers whatsoever, and from getting no help. I felt so hopeless. I was drowning in all of this unexplained pain and fatigue and there seemed to be no light at the end of the tunnel. Although I drove away angry at him for his condescending manner and his refusal to even so much as take blood, I didn’t realize how terrible he really was until I was actually diagnosed. Two months later, thanks to my researching online and finding a doctor whose specialty is FMS and Chronic Fatigue Syndrome, I tested full blown CDC positive for LYME DISEASE.

So, now, after being in treatment for 18 months and still plugging along, I walked off the elevator and I was taken back to my visit with HIM. I will have to have all of my lab work done there, 4-5 times a year, and I will have to pass his office. I am still trying to understand why this has come back into my path after all of this time; I wonder what I am supposed to make of it. Any suggestions or ideas? I know what I want to do, but it wouldn’t be productive nor healthy for me.

If you think of a productive way I can deal with this doctor, please let me know!  I feel like my doing nothing just condones his ignorance and his unbecoming attitude. It feels wrong to do nothing, Like he did to me.

Peace, -B

Cliff’s Edge

On the edge!
On the edge!

What a week!! I thought there about Tuesday and Wednesday that I wouldn’t make it, but guess what? I did! I wonder at what costs though. I say this because I have been struggling all weekend with symptoms. Most aggravating is the all over soreness and pain. Then, there are the IBS issues. And then the indigestion issues. All of this hit me on Friday at school, and it hasn’t let up. NO MERCY!

Without TMI, I just feel all over terrible. If I can get one issue to subside, another flares up. I have tried epsom salt baths, resting, pain pills, alka selzer gold, heating pads, gingerale, tea…..nothing, nada. I am pretty sure this is what is mean by herxing!  I have tried taking my mind off the total uncomfortableness of being me by reading, Facebook, grading essays, playing Candy Crush, watching Netflix. Alas, I just can’t get out of myself enough to feel better.

I missed an event last night, a family event, and so that was tough. Then, today, my husband is working on his new shop area and of course, I am in no shape to help. Instead, my 60+ year old in laws are slaving out there. I feel so useless. It all hit me this morning in the shower, which was a chore in and of itself, and I just gave in and started crying. I do have meltdowns like this every so often but it’s been awhile. I do not like it when this happens because I feel so helpless. I feel like I have lost some pieces of me that I may never get back. I feel like I am at the edge of a cliff, teetering, looking into a vastness, a place where nothing changes and I just continue to struggle every day.

I know deep down that this is just a culmination of being exhausted, stressed, and depressed. I guess being aware of all of these things helps? My husband says that it is a good thing to have a meltdown every now and then, to grieve about this illness. And, for the most part, I do feel better after my little meltdowns. How do you deal with all of the stress and symptoms of Lyme disease? Any tricks you can share with us? I think I need some Kid President today.

Off to a nap. Peace – B

Sunday Morning Coming Down

“Well, I woke up Sunday morning, with no way to hold my head that didn’t hurt…” – Kris Kristofferson

Up and at ’em, kind of early this morning. I honestly feel like I have a hangover. However, no alcohol was consumed. Scout’s honor! Not one drop! Lyme seems to suck the fun out of everything. Just a disclaimer: before Lyme, I did enjoy having a couple drinks on the weekends. My favs included white wine, and in the summer, some beers. But all of that has come to a complete halt as of, or even before, my official Lyme diagnosis. My body cannot handle alcohol.

On one hand, we can chalk that up to a Plus. On the other, it really does suck that I sincerely cannot have even one drink without feeling like a truck has run me over. Sometimes, like today, I feel like a truck has run me over anyways. Fun. A couple of reasons to stay away from adult beverages as a lymie is one, the sugar. The bacteria feed off of the sugar and LOVE IT! So, let’s work on not giving the bacteria Borrelia burgdorferi or Bb any more ammunition. It already has the upper hand here! And second, many of us are being medicated with antibiotics. Strong stuff too and at high doses. Alcohol can definitely minimize the effectiveness of the meds and again, we don’t want to hinder our ninja fighting machine anymore than what is absolutely necessary. When I do treat myself, and rarely, to a drink, it is something to enjoy. How do you feel after consuming alcohol? Or is there any other foods/drinks that trigger symptoms for you?

Wishing you all a Happy Sunday. -BHL-980[1]

No Man is an Island….Or?

IslandHere it is Saturday afternoon. I am having a difficult day today after a full week back at school. Barely, I made it out of bed about 10 a.m. I didn’t want to get up, but I was so sore all over in my muscles and joints that laying around wasn’t helping. Getting up didn’t help as much as I had hoped. My huge plan for day today includes a nice, steamy epsom salt bath. Ahhhh.

Dealing with alone time is something someone with Lyme has to deal with very quickly. I feel lucky that by nature, I am an introvert. I relish time alone. I am never bored. Seriously never, unless it is a really boring professional development or a meeting with no purpose, then, yes, boredom sets in. If only I was a good doodler! Otherwise, I can sit for hours, reading, writing, thinking, with no one about to interact with. Thus, I had an advantage starting on this unexpected journey with Lyme. I do get lonely sometimes, and of course, I do miss out on cool events due to poor health off and on. That is tough. But at least, as an introvert, I feel like I haven’t had as hard of a time seguing into spending lots of time alone.

Extroverts must have a much harder time. I mean, they access their energy by being with other people. Extroverts are social by nature and having Lyme puts a Huge Dent in social activities for sure. Lyme takes over minute details of one’s life no matter how hard we try to keep it at bay. For instance, we made plan with friends last weekend to meet up for dinner last Saturday night. Literally, Friday mid morning, I felt confident that I could make it to dinner the next day. I mean I had all Saturday to recoup, right? Best laid plans and Lyme comes along and laughs in my face! Saturday was no bueno. I had stomach issues all day long, including cramping and nausea. I tried some hopeful remedies, but no luck. We had to cancel and stay at home. Disappointed, and helpless to change the facts that I could not make it to dinner out, my husband and I stayed in and watched tv. This scenario is an all too familiar one at this point. After 18 months in treatment and before that, 4 years sick with no idea what was going on, I am still trying to accept that many times, I have to cancel plans. I hate to disappoint anyone, including myself and so I am still working on this hurdle.

Being sick and dealing with different symptoms day to day, hour to hour, I live more of an internal life, as do most Lyme sufferers I guess. But I especially feel for my fellows who deal with Lyme and who are extroverts.

Peace – B

Back to the Grind

So after a very relaxed and unproductive summer, that is unless you count watching gobs of Netflix and Hulu shows inspiring – as I do – I am back at it! No more waking up at 9, sipping on java and reading blogs, moving on to light housework then a long summer nap/rest/ Candy Crush marathon! Yes, while other teacher friends bragged about traveling and completing ultimate house projects, I “did” Lyme time as I like to refer to the time I spend healing.

I’m not sure how much I accomplished in Lyme time, besides maybe adding a few pounds to the 8 I have already put on during this recovery. However, I can say that the fatigue is lessening as are the headaches, both good signs as far as I am concerned!

Starting back for me was August 12th. We had 3 staff days that week and 4 staff days the following week. I survived because I had a day each of those weeks to catch my breath. But this week was the official first week of school for students as well. Starting off strong, I managed to get through the first few days juggling all kinds of things, including 3 separate preps for my English classes. But by yesterday, I was wiped. Now, I am up because I may be over tired? Not sure. Anyway, I’ m proud that I survived the first real week Of school, and I am grateful forsuch a kind and courteous group of young people. While I am apprehensive about my health and holding up day to day, I am still looking forward to growing relationships with my new group of students this year. After, 14 years of.teachning, I sure do love it!

Quick update

So finishing up week 4 of IV Rocephin. Pretty much having medicore days with joint pain and stomach issues. I may get the picc line out Tuesday, or have one more week of IV meds. Just depends on my doctor. Insurance has covered through 8/6. We’ll see.

Randomly, I finally was able to watch True Detective on DVD. Wow. Awesome. I am addicted now. And, I just found out there is one last season to The Killing. Whoo hoo. Love that show too!

Ok, talk at you later taters.-B

Boredom

So since I am a teacher, I have about 2 months off. Now, granted, this time is filled with some work such as professional workshops, trainings, interviewing candidates, working on lesson plans. Still though, is is a nice chunk of time to call “vacation”. This summer, I took some of my required classes right after school was dismissed and while I have gone up to campus to conduct a few interviews, I cannot complain at all. I have had a lot of time to relax.


I would really like to say that I have spent this time in a productive way, but that isn’t the case at all! While I have managed to do some small projects like organize the closet, the plastic drawer and the papers that need filing, other than that….Ugh. My main focus this summer is to work on getting well. This requires dedication! Ha! I have my Picc line now, so it takes about an hour to dose. I then try and clean the house as much as I can: 6 dogs running in and out the doggie door and the shedding-Oiy! About noonish, I lay down with a heating pad and a book and do some reading for a few hours. Sometimes, this turns into like 4 hours. And then, sometimes, I attempt dinner if I know husband will be home, proceeded by watching some shows.


While I wish I could do more, I know that the best thing for me right now is to not overextend and to rest constantly. I am working hard to build up my immune system so it fights back the Lyme as well as for the first day of school! I plan on working this year! I completed last year successfully; it was a long haul but I was proud of myself for meeting this goal. Anyway, with resting as the project this summer, ain’t much getting done! I hope all of you are getting some relaxation in too!

Peace ducks,
-B

IV Meds – Week 2

Today, the home nurse visited. She changed my PICC bandage; the first one was giving me some sort of rash. The rash is small, little bumps only on my left arm where the line is located. It really doesn’t itch. Nurse seems to think it was the clear tape from my original bandage that was causing the irritation. We’ll see, I guess.

This first week, I have just been really tired. But today, I woke up with blasting headache at 5:30 a.m. when my sweet hubs, LM, headed to work. I tried to tough it out and then took a pain pill. By the time Nurse visited about 10 a.m., the headache was back at it. Ugh. I went outside to pick up the mail and water the little garden. Our tomatoes are still alive even though the temperatures are climbing into the mid 90s. By the time I came inside, I was not feeling well at all so laid down for a bit. Sitting up now, trying to have a snack. playing it by ear today!

On a side note, I am so grateful I am a teacher! I have been able to rest whenever I want and that has been terrific! I do have to work a bit in the afternoon this Thursday, but nothing too major.

Hope all is well out there in the real world, chickies! -B