I haven't updated in a very long time....because, quite frankly, there has been nothing interesting to report. I'm still sick. I have days that are better than others, but I have to take my pain meds every 3-4 hours during the day or the pain is horrible. I don't like having to take pain medication and over time it becomes less effective and I have to change it or up the dosage. My goal is to be off of all meds one day. No pain meds, no antibiotics, no sleep meds...nothing. At that point, I will be one happy camper. I am still seeing Dr. S in Houston. She has been monitoring my CD 57. Due to my lyme brain, I can't remember what it was last time...lol. But it has not gotten over 60 yet. My next appointment is 7/15, so we will see how that goes. I'm still feeling like a failure of a mom and wife. My husband doesn't have the wife that loves to go out anymore. I much prefer lying on the couch with my family and laughing at goofy shows. The arthritis in my left foot makes heels next to impossible to wear. I'm not as pretty as I was. I have gained weight. I want to work out, but finding the energy is next to impossible. Plus I'm having a new area of bad pain. My right shoulder. Ugh. I am pretty sure my marriage won't last if I don't get better soon. Luckily my kids are old enough to be pretty independent. I feel bad that I don't cook as much as I used to. I am going to try to work part time. I got a job as a veterinary assistant and I am thrilled. I start next week. I hope my Lyme doesn't sabotage this opportunity. If it goes okay, I might try to get certified as a vet technician. We will see. I worked as a long-term substitute from January to April this year. It was an amazing experience. As long as I was on my meds, I felt really good. I think working kept my mind of my condition, so the depression stayed under control. Let's hope my new job does the same..... Hope all of my fellow lymies are doing well.

Somebody Else's Wonderful Words

To all my fellow lyme (or chronic pain) sufferers. Please read this article and tell me if it makes you feel as good as it did me.  It sounds like a great way of living/thinking.

Doing the Right Thing When the Wrong Thing Happens (via inspiremetoday.com)

We have all heard the phrase Life isn’t fair. Some of us who have read the Bible are familiar with the story of Job. In the Book of Job, Job is presented as a family man who lives a good and prosperous life, but is eventually beset with horrendous…

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Ferraris and Roses

Feeling Guilty

How do I prove to my husband that I'm truly wanting to get better? He's been there for me, taken me to doctors, picked up prescriptions, and more.  He's tired of me not feeling up to doing fun stuff.  I don't want him to think I am using Lyme as an excuse to not go out with him.  It's so hard to explain this pain and fatigue to anyone.  I hate it.

I'm starting a new antibiotic tonight or tomorrow.  Pray I see results soon....

Do You Really Think I WANT To Feel Like Crap?!?

   

  

I think the world thinks I'm lazy.  

It wouldn't bother me if it weren't for my children. I honestly don't want them to resent me when I'm gone because I didn't have the energy to be a good mom. I never dreamed that at 44 years old, one hour of shopping at the mall would leave me feeling drained, feverish, and in pain.  I never would have thought that I would not feel like going to Target or Michaels or even Petsmart (my favorite stores) most days because it hurts too much.  Driving wears me out.  Going out to dinner is exhausting.  I truly am "a bore".

But, dammit! It's not because I want to feel this way!!! It's not me just wanting to be a blob! I have so much I want to do in this life! I love photography. I want to teach again. I want to do crafts, bake, and learn to use my new sewing machine.  I want to get my masters degree. I want to travel.  I want to exercise. I want to go to lunch with friends.

I want my life to be normal!

I have decided that I am going to start back up on my antibiotics.  I think the next one I'm supposed to take is an injection, but screw it! I'll do it if it gives me even the slightest edge on this stupid Lyme Disease!

I'm not lazy! I'm infected with Lyme.  Please understand that.....

Distractions From Pain

Games are such a good distraction for me.  I love games like Words With Friends and Matching With Friends that keep my mind busy, but I have to say that sometimes mindless games are even better.  Draw Something is such a hoot! I suck at drawing, but love laughing at my crazy pictures. It's a fun game if you haven't tried it.

Just sayin.....

Change

So I'm not sure I am doing the right thing, but I am desperate. I have decided to stop antibiotics for now.  I'm tired of herxing and my marriage is suffering.  I figure I can't get much worse.  I want to be able to be a good wife, mom, stepmom, sister, daughter, and friend again. I'm none of those right now.

This is day 3 of no abx and my only symptoms that are new are sharp ear pain (left ear-along with dizziness and left temple pain), bad allergies, and random twitches over my right eyebrow.  The allergies seem to flare up every time I go off antibiotics...which is strange to me.  The ear pain is probably a little ear infection, but oddly enough my daughter has the SAME pain and symptoms in her ear too. Odd.

I'll update more this week.  School starts tomorrow and I'm ready to get back to a "normal" schedule.

I Just Can\'t Do This

I am so depressed again. I am isolating myself from everyone and I hate myself for doing so. I want to quit so badly. I am so miserable and tired of feeling bad. I am tired of feeling like I don\'t belong anywhere. I want to smile again. I want to feel important again. I want friends and family in my life. I am truly close to giving up. I\'m hanging on for my kids, though. I\'ll hang on as long as I can.

Doctor Visit Today

Saw my PCP and I think it went well. He definitely has issues with the way my LLMD is treating my illness, but at the same he supports me. We will see what blood tests will show. I\'m supposed to try to see a shrink because Richard thinks I might be bipolar. Fun. I\'m a big old mess, quite frankly. And I hate it.

I want to quit

On vacation. Quit abx to go on this trip. Also ran out of my antidepressant, Cymbalta, a couple of days ago. Double whammy! Suicide thoughts are running rampant. Pain and depression have taken over. I am a waste of space. My husband hates me. I am boring. I am ugly. I am moody. I am unnecessary. I want to leave this world so very badly. I need help. I need someone to gently love me and help me through this dark time in my life. I am lost. I\'m bitter. I\'m damaged beyond belief and probably have no hope for a normal life. I\'m so sick of feeling this low in my life. Friends at dinner, never include me in conversation....except tonight when one told me that I ate as much as she and her husband combined. That felt lovely.

Bartonella Treatment

I\'ve been on rifampin for a couple of weeks and quite frankly, this is the worst I have felt since getting sick. I\'m not even on the full dose yet. I\'m in so much pain and the fatigue is overwhelming. I honestly think I am losing my battle with Lyme. I\'m scared and sad. Please pray for me.

depression

I honestly don\'t know if it is due to the Lyme, but I am depressed to a point I don\'t think I will ever get over. I feel worthless, unhappy, and as if I would be better off dead. I am on vacation and locked up in my dark room alone instead of enjoying my family and the beach. I can\'t go on like this. I truly can\'t...

Not Doing Well

I feel like I won't live much longer for some reason. I am not doing well. I'm probably herxing from flagyl, but I feel like something is really off. I can't explain it and I am tired of going to doctors. I am tired period. I'm not sure why, but I feel like a ticking time bomb. Chest feels tight. Migraines daily. No appetite. I'd say I'm scared ...but I'm just too damn tired of being sick to be scared.

Lyme Disease Is Kicking My Butt!

I haven't blogged in a while.  I truly haven't felt like it.  I have tried to stop complaining, whining, etc.

I have realized, however, that I need to vent.  I need an outlet.  I feel like dirt and I can't just ignore it.

So....if it's okay with you guys, I'll be around a little more from now on.

Hugs to all,
Beth

Lyme Disease

I have so many thoughts running through my head, but I don't have time to post a long blog update.  I will, however, touch on a couple of important topics and then will elaborate later (tonight hopefully).

My Western Blot test results came back CDC positive for Lyme Disease.  Part of me is so relieved to have a diagnosis that I can focus completely on and treat without any doubts.  The other part is scared because I know how difficult this treatment can be.

Next issue is my marriage.  I have NOT been a good wife.  I'm not talking about just because of my sickness, although I know that the pain etc has definitely contributed to the way I have treated my husband.  In a recent post, I mentioned getting away from negative people who don't believe in my illness.  That, IN NO WAY, was referring to my husband.  He has been very supportive...especially as he has learned about Lyme Disease and me potentially having it.  It's not easy being the spouse of someone with a chronic illness and I need to give him credit for all he has done.  I love him and wouldn't be able to survive without him.

So...we are working on what has been a really rough spot in our marriage.  I am, also, working on me being a better person, a better mom, and making my house a better home.  I know the key to all of these is to be healthy again.

I am officially starting a new phase in my life.  Positive attitude and hopefully positive results to medical treatments will help me make a more positive impact on my household and family.

Wish me luck!

I Might Have Answers Soon!

My GP agreed to let me get my blood drawn for the much more accurate Western Blot Lyme test.  He was cool about it.  Didn't put anything in my chart about it, and I sent it of myself with the $410.  He, also, went ahead and prescribed doxycycline since that is what I will take if I do, in fact, have Lyme.    He prescribed it for "acne" and gave me three months worth. 


I don't really think I have Lyme as much lately.  Honestly, I don't feel I'm quite as sick as so many others I read about.   That said, I've had the low grade fever every day for two weeks now, whereas it used to be only a couple days a week for the past two years. 
The day after I started the doxy, I felt more pain than usual.  I was miserable for two days.  I woke up in severe pain and it continued the entire day.  The only relief I got was when I took a pain pill twice a day.  It allowed me to function, thankfully.


On days 4-7, however, I had the least amount of pain I had experienced in the two years I have been sick!  We were in Chicago and doing a lot of walking, and I handled it really well.  I was able to do things without having to rest all the time.  My joints weren't aching.  My fatigue was even better!  


I forgot to take my evening dose of doxy on Monday and guess what?  I hurt badly again on Tuesday.  


It APPEARS to me that the antibiotic is helping with my pain.  Hmmmmmmm.  Does that mean we are dealing with Lyme?  


I guess we shall find out when my test results are back.  (Hopefully in another week)

Lyme Test~Blood drawn and sent to lab on September 19th

Keep your fingers crossed!  We might be on to something here!

Change is Good

Stress. All of us know what that monster can do to those of us with chronic illnesses. Stress can literally break down body systems of even the most healthy people. I know that stress causes me to hurt twice as much as I do on a normal day. I tend to get hives, mouth sores, more days with fevers, and migraines when life gets to be a little too much.

That said, I have decided to make a lot of changes in my life. I have got to get healthy again and I feel as if I can do more to help myself than I have been doing. I don't think I will make all of these changes, 100%, right away. I am going to actually consider them to be goals.

Here is what I am going to strive for:

1. Drink more water. I am the worst water drinker! I hate the stuff! But--I can tolerate it with lemon, so I will stock up on lemons and see what I can do. By drinking more water, it should be easier for me to achieve the next goal....

2. Drink less coke/diet coke.

3. Exercise at least 3 times a week. I love Zumba, but it's hard on my knees. I may try to attend Zumba class on days I feel okay, and then walk on bad pain days.

4. Eat healthier. My diet sucks. Period. I have to work on eating more nutritious foods.

5. Take supplements consistently. I'm still researching what I want to take, but I have read that the powder mixes are much better for smelly pill haters like myself. Do any of you have any recommendations?

6. Spend more time with people who truly care about me. I tend to go into my cave and hide when I'm depressed or feeling lousy. It's so hard for me to muster up the energy just to make the 5 minute drive to Starbucks to meet a friend on some days. But I have come to realize that it ALWAYS helps me feel better when I spend some time with friends. I am lucky to have a few friends who understand that I'm truly sick and that it's very hard for me to commit to any plans.

7. Eliminate people from my life who cause me more stress. Now of course I can't exactly ship off my kids, (haha!!) but I can stop spending time with people who make me feel guilty or lazy because I'm unable to do some things. I don't need that. I need love and support. Even if I love somebody more than anything, if they are unwilling to understand what I'm going through, they are not going to be good for me.

That's about it....what do you think about my goals? Positive changes, eh?!

Hope you all had a great weekend!!!
Hugs,
Beth


- Posted using BlogPress from my iPad

A FREAKY New Symptom

Teeth kinda freak me out.  I'll admit that right up front.  The thought of losing a tooth or teeth gives me the willie nelsons BIG TIME!

That said, when I woke up Saturday morning to my bottom gums looking very different...I got so scared!  It looked like my gums had completely receded over night.  They were really low and had white patches right below the teeth. They bleed super easily now, too.  I'd take a picture but I'm so embarrassed by these kind of things....

Anyway.  I've felt pretty icky all week.  My temp was at around 100 for about 5 days in a row.  I had the pink-eye type problem for about 3 days.  My skin has been extra itchy and I've had several episodes of hives. And now this gross new symptom.  I just love this mystery bug!  (NOT!)

Heading to the dentist now.  Will update when I return. Wish me luck!!!!  

Quick Update

I woke up two days ago with the most annoying sand-in-the-eye feeling. It drove me bonkers all day. The next morning the eye was icky. It was matted shut and goopy. It was a little swollen and red. I assume it is pink eye. It's a lot better today, so I'm not going to the doctor for it. I think I had pink eye about a year ago.

Not much else going on here. Higher temps lately. Up to 100.2. Feeling pretty tired and moderate pain.

Hope you all are doing okay!
Beth

Thank You

I truly feel blessed to be part of this amazing blogging community. I cannot tell you how much all of your comments and emails mean to me. Sometimes I struggle with feeling like a foster child with no definitive diagnosis. I guess it really doesn't matter, does it? RA, lupus, Lyme, or fibro....whatever the heck I have....it hurts. And all of you understand pain.

I hope that I can be there for each and every one of you when you need someone. I hope I can pay it forward.

Thank you guys....for helping carry me through the darkest, most painful, days I have experienced with this illness. I'm doing better emotionally. The pain is still bad, but I'm not afraid to take a pain pill or two a day....and that makes a huge difference at this point. I am hopeful that I will get a diagnosis soon and then a treatment plan that works. Remission..or better yet a cure... would be a gift from God at this point.

I pray for that gift daily....for all of us.