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


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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.

Today Almost Pushed Me overt the limit

I woke up in terrible pain today. Knees, elbows, toes. Later when the migraine hit, it really knocked me to the ground. I had to go take a rest and I was just quietly moaning for help. It was so painful.

I'm really embarrassed, but I keep hearing what sounds an older radio show with two men talking away. It's quit scary. I am losing my friggin mind. My temper is out of control. I need help. I need support. I fear I may take my life. I need a friend. I need prayer. Please.

Test


- Posted using BlogPress from my iPad

A Quick Update

I went to see my GP today.  I really like him, but I know he thinks I'm a hypochondriac.  He is a friend....and honestly he's a really nice guy.  He is never rude to me or anything, but he has always made it pretty clear that he believes I *am* healthy and that I would feel much better if I were to be less stressed, exercise more, etc. 

I went in today because for the past few weeks, I have felt something below my ribcage on the left side.  It doesn't hurt, it just feels a little uncomfortable.  I compare it to being 9 months pregnant and having a little baby foot positioned there.  It's weird.

Plus, I figured I would mention the vertigo, fingernail changes, consistent low-grade fever (as opposed to just a few times a week), and the lovely yeast infection I am enjoying. (ha!ha!)

He did that little finger tap thing all around my belly and said I was full of gas.  He demonstrated the difference in sound when he tapped my liver, my lungs, then my stomach.  He believes that could be what I'm feeling.  My stomach being full of gas like that would press up on my diaphragm.  To make sure, though, I had some blood work done.  He said he will call me tomorrow with the results. 

Meanwhile, I'm on diflucan for 7 days and he wants me to try to go off (or at least cut back) the adderall.   I am supposed to relax and see if I feel better. 

We shall see.  I'm still confused, but seriously starting to wonder if I've been making myself sicker than I really am.  I mean...no tests have shown anything wrong with me.  Am I crazy?  Too much of a stress case? 

I don't know.  I don't think that's really it, but I have no proof. 

Goodnight, my friends.  I'm off to go check up on your blogs!  xoxoxo

So weird....

I've written a couple of posts on my iPad this summer and none of them seem to be actually publishing (or even being saved as a draft!).  Ugh.  That's annoying. 

Not much new here.  Still not feeling well.  Still having some tremors and a little vertigo.  It's only mildly annoying.  At my rheumy appt, nothing was changed.  I'm off the stupid Lyrica (never did much-if anything-anyway)  He only talks about fibromyalgia now.  Funny because I truly don't think I have that.  (but what do I know?)

I tried to go back to my Infectious Diseases doctor because I wanted to have her run a Western Blot test for Lyme Disease.  My very first rheumatologist ran a C6 Peptide on me back in October of 09 and it was negative at .41.   I never had this doctor run one, because I just trusted the other test. I've since learned that there are a TON of false negatives on that test, so I figured I should try a different test that tends to be more specific and accurate.  Well....she won't let me come in for blood work.  She said that they are "not accepting new LYME'S patients" at this time.  Ummm...wth?  Seriously?  I have not been diagnosed with Lyme yet and I am an established patient.  How could she do that??  Obviously, she is afraid of the LD controversy and wants to stay as far away as possible.  ARG!

I'm scheduled to see a LLMD (lyme literate medical doctor) at the end of October.  We don't have any of those here in Texas, so I have to go to Missouri to be seen.  Insurance doesn't cover it, either.  I'm a little frustrated because it's not fair that people aren't getting treated for Chronic Lyme properly, doctors don't believe in it, and therefore those people that DO indeed have LD are going longer and longer without proper treatment and they just get more and more sick as time passes.  It's so unnecessary.

Then I start worrying about the other side being true.  It's not a scam, is it?  I mean...I don't want to have to pay tons of money to see a doctor in another state, but I really think LD is a possibility based upon my symptoms.  I don't want to be on antibiotics for months and months (not to mention the supplements, etc).  BUT I *DO* want to feel better and I *DO* want my life back.

It's hard for me to type much because I have terrible concentration these days, but this journal is important because I need to keep track of my symptoms, treatments, and meds and my memory SUCKS now.  It's rather scary, actually. 

Well, I promise to update sooner.  Hope you are all feeling well and having a nice summer!  :)
xoxo,
Beth

It's Real, People. I Promise!

Yesterday my husband said something to me that hurt.  Sure, it's not the first time it's happened and I'm sure it won't be the last....but this was really different.  This is something that I guess I just realized, REALLY realized, people without an invisible illness, like RA, must honestly believe. 

He said, "Beth, you've been to many doctors over the past two years.  A couple of them didn't think you have RA.  A couple of others didn't think you have fibromyalgia. Maybe it's time to try something different..."  I was trying to guess what his marvelous plan was, but finally just took the bait and asked, "What can I do?  What do you think I can do to finally find a definitive diagnosis and get started on a treatment plan that will possibly end this almost 2 year flare from HELL?"
Guess what his idea was..... it's a good one......"What about a change in attitude?  Maybe having more fun, going out more, etc?"

Oh, was I pissed off. 

Then I started thinking about all the people who don't understand the relentless pain I have been dealing with (which is pretty much all my friends and family) and it dawned on me that it's really difficult to relate to something you don't have in your life yourself.  I mean, I have no idea what it feels like to:

break a bone,

 

get stung by a bee,

or God forbid be attacked by a shark...

BUT...I do believe the people that experience these things are in pain---even though I don't know how, exactly, their pain feels.  I just know it is pain.  Pain that doesn't go away by merely trying to be happier or getting your mind off of it. 

Pain is your body's way of telling you something is wrong.  Once you know what is wrong, you can begin to find the best way to get better. 

I want to help people understand that just because you can't see what hurts those of us in my condition...and it seems like we don't just "get better" like most people....we are in legitimate pain.  It's real people!  

Stepping off of my soapbox and wishing you all a wonderful day!

*hugs*

My husband says I'm becoming an invalid

Because I have had a really bad week and have felt crappy, my husband seems to be getting great pleasure from kicking me while I am down. He managed to imply it's all in my head again, he criticized the fact that I didn't get all my chores done this week, and he complained about me never wanting to go out of the house much anymore.
It's great to be loved. Haha! I'm seriously thinking about getting out of here. I need out. I just want to go hide in a hole and slowly wither away until, finally, my heart beats for the last time and all the pain is gone.

How To Know When To Call Doctor

It's very frustrating when you have no idea WTF is wrong with you. Duh, right? If you know you have been exposed to the chicken pox, you know you don't have to go to the hospital when you break out in red, itchy bumps all over your body. (an old fashioned example since most people get vaccinated for c.p. now) But when you have mystery illness from hell, you are left to second guess a lot of the time.

This morning I felt a lot better fatigue and pain-wise, but right away I noticed something "not right". I felt like anytime I walked more than a few feet, I would feel almost out of breath....and definitely like my heart was pounding extra hard. When I sat down to edit pictures, it was better, but still the strange feeling in my chest persisted.

At around 2:00, I had to pick my daughter and 2 of her friends up from summer school then take them (as well as my youngest son and stepson, and their two next door neighbor friends) to the mall. The girls were doing lunch and then a movie, the boys-just a movie. Anyway... I started to feel a bit icky on the way there and I developed one of my random hives (this one was HUGE and on my left knee). Meanwhile the chest pressure is getting worse. I tried to relax by the pool when I got home, but I felt too uncomfortable. I went to lie down for a bit. My heart rate was normal for me at around 85. I didn't know what to do.

When I went back to the mall to get the boys, I started feeling a little nauseous. I didn't know if this is normal in people who have whatever the heck I have because nobody knows what the heck I have!

All I know about my illness is:
1. It is a thief- because it steals my time with my family and
friends. It has stolen my life from me. I feel like I don't enjoy life nearly as much anymore. That capability has been ripped off by this stinkin' condition.
2. It is a fraud and a liar-because it causes all of my blood work to come back NORMAL, when something has to be very wrong for me to hurt so badly every day.
3. It better not end up serving a life sentence. The two years I have spent trying to identify the bastard, have been the two worst years of my life. Pain, meds, doctors who don't believe, more pain, fatigue, letting friends down, letting family down, vial after vial of blood work...need I go on?

Anyway. My husband didn't want me to go to the ER tonight when I really was about to go.

I survived the evening, so I guess he was right. See? I would've made the wrong decision.
Ugh.

Good night!

I

Nobody Understands

I figure this blog is my safe zone.  IF anyone is reading, you probably have an autoimmune illness, or some other painful condition that "normal" people don't understand.   Thing is, "normal" people understand Cancer.  We all hate it!  Problem with our conditions is that people don't UNDERSTAND how we feel. 

I hate the fact that I still don't have a solid diagnosis.  I really do.  I am considering going back with the original doctor who did the most thorough testing and diagnosed me with USpA.   I don't believe I have fibromyalgia.  The fatigue is the symptom that matches, and that goes with any number of other conditions.  I need a solid diagnosis so I can get on something to get me into remission or out of this flare that I've lived in for almost two years.  I'm so tired of hurting.

Nobody knows this pain.  I swear my family and friends (those I have left) think I'm faking or exaggerating or being a hypochondriac.  They don't know how truly sick I feel.  Or if they do, they don't care. Maybe that's it.  Maybe they are just so sick of me being sick that they just don't listen or care anymore.

My current doctor won't refill my pain meds that I take at max twice a day, but typically only once....a few days not at all.  He gave me tramadol which is doing NOTHING for my pain.  I'm weak.  I have no appetite because the pain is so horrible that it makes me nauseous.  I can't live my life this way.  I'm seriously thinking about ending it all.  (Please don't flame...it's how I feel)  I know my kids would be better off with their father and step-mom.  Two HEALTHY parents who love them.  I'm just way too tired and in so much pain to be any good for anyone.

I need help.  I need a diagnosis.  I am NOT going to another doctor.  I am just wanting something to work for me.

Please.

Rest In Peace

I was saddened to read about the death of a blogger I followed. http://rasuperbitch.blogspot.com/
She was bright, witty, and made me feel "normal" for being abnormal. I don't know how she died, but I do know she was in her thirties with a young son and a loving husband. Dammit, life is NOT fair!!!!!
I'm praying for the family of rasuperbitch. At least she is no longer in pain. In that respect I sorta envy her.

And now for the newest symptoms......

I've started experiencing muscle twitches and weakness.  Nothing serious.  Not like I'm having a seizure or anything.  Very subtle...kinda like when you are just about to doze off and you jerk a little...?  But the weakness is there.  I feel the weakness.  It's in the muscles of the bottom of my leg mostly.   It's so strange. 

Nobody Gets It

Today just sucked.

Sores on my tongue were driving me crazy.  Pain level was a 9 a good part of the day.  I got a hive in a new spot....on my left hand.  And I was busy all day....so no nap.  (ugh)

My husband got floor seats to the Mavs game, and I told him I didn't want to go.  He made me feel guilty about it.  He STILL is bugging me about having to turn down these tickets.  He doesn't get how terrible I feel today.

In a couple of weeks, I am going to San Antonio with my daughter's choir as a chaperone.  It will be a lot of fun....but a lot of walking.  I REALLY am uneasy about going.  I have been putting off writing the 360.00 check and I finally told her today that I wasn't sure I could go....BAD IDEA.  She is correct in telling me that I *did* already commit to going---months ago.  She was really upset and reminded me that it HAS been stormy a lot the past few days and I've told her that bad weather affects my pain. The weather won't be like this in San Antonio and furthermore, all the room assignments have been made.  (hehe)

But seriously, I couldn't tell her no.  I have to go. 

Nobody gets it.  Nobody knows how completely awful I feel.  I'm really starting to fall into that wanting-to-just-disappear depression. 

I need to find a doctor who can help me.   Soon.

What Makes Me Sad....

I went to IKEA today.  I love that place.  So much to look at and amazing ideas.  I could shop there all day.

But I CAN'T!

Why?  Because some no-name, nobody can figure it out, illness makes me feel like dirt after shopping for about 30 minutes.  My legs start to ache and I start to feel feverish.  It's horrible, but it always happens when I try to do anything that requires walking...including grocery shopping.   That really makes me sad.  I can't have a normal life if this is how I feel when I go out and do something.

I'm home now.  I'm exhausted and have a temp of 99.5.  I need to find a rheumatologist, even though I know they will be stumped too.

Another symptom I'm having a lot (with the chest pain and fast heart rate) is dry mouth.  Fun, eh?

Hope you all have a wonderful Easter weekend.  

Here We Go Again

I am going to call one last (I hope) rheumatologist tomorrow.  I had to stop seeing the one I've been going to because he is not on insurance and since he still hasn't diagnosed me, it's just too dang expensive.  I told him and he totally understood.  It sucks having to start over, but we have to do it.

Meanwhile, I feel like I'm dying.  I'm not kidding.  I'm sicker than I've ever been.  I'm in so much pain.  My joints in my knees, fingers, and toes hurt all the time lately.  After a nice little 2-3 month break from it, I'm once again getting the hive-like intensely itchy rash attack about every other day.  My chest is now hurting a lot of the time, as well.   Along with the pain in my chest, my resting heart rate is up around 95 a lot of the time.  I'm just not feeling well at all.  Quite frankly, I'm scared.

So I will try to find a new doctor tomorrow......me and my stupid mystery illness that shows up in none of my bloodwork.  I need Dr. House!  (don't I wish!)

Seriously, though, my gut tells me it's lupus.  My last doctor was going to test me again for it, but he never got around to it.  I don't know what to think or do anymore.  All I DO know is that I am getting sicker.  I need help and I pray that I can find a doctor who can figure this out.

I've been reading blogs every night, but just haven't felt like writing (or even commenting).  I decided that I probably need to write 1~for therapeutic reasons...it always feels good to vent this way!  and 2~to keep a journal/record of my symptoms...my memory sucks these days.

Hope you all are doing better than I am.