Pain, Pain, Go Away

Not Doing Well

2012-01-30T22:02:00.000-06:00

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!

2012-01-11T23:44:00.001-06:00

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

2011-10-12T14:32:00.000-05:00

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!

2011-09-30T10:54:00.001-05:00

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

2011-09-12T00:09:00.001-05:00

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

2011-09-06T14:06:00.006-05:00

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

2011-08-30T10:51:00.000-05:00

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

2011-08-22T00:09:00.000-05:00

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

2011-08-11T01:08:00.001-05:00

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.

2011-08-11T00:39:00.001-05:00

Test

- Posted using BlogPress from my iPad

A Quick Update

2011-07-29T00:13:00.000-05:00

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....

2011-07-20T18:24:00.000-05:00

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!

2011-06-21T12:01:00.000-05:00

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

2011-06-18T09:24:00.002-05:00

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

2011-06-17T23:38:00.001-05:00

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

2011-06-16T14:17:00.000-05:00

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

2011-06-13T15:51:00.000-05:00

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......

2011-05-04T21:23:00.002-05:00

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

2011-04-25T22:17:00.000-05:00

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....

2011-04-23T15:53:00.000-05:00

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

2011-04-17T23:24:00.000-05:00

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.

Lesson Learned .... the hard way.

2010-11-21T10:35:00.000-06:00

So....I'm officially going with the fibromyalgia diagnosis. The tests all came back pretty normal. No lupus, no inflammation or rheumatoid factor. My magnesium was low, so I'm pillin' it up for that. There was strep in my urine, but i have no symptoms of a UTI, so we aren't treating it. I tested positive for h.pylori again (been there, done that with the zillion antibiotic regimen to treat it, so I'll talk to my GP about it and probably will just ignore it). I stopped the mtx and arthrotec and am slowly increasing my Lyrica dose from 75mg 2x a day to around 200mg 2x a day.

I'm not sure why, but....this week has been AMAZING!!!! I've had my first completely pain free days since July 2009! I had 2 of them! And the rest of the week the pain was minimal...maybe a 2 or 3 out of 10. It was great!! I also had a lot less fatigue.

I've been really busy. My photography business is booming, Carly and Jake had tech week this week for a show they are in. They performed Friday night (with cast dinner after), Saturday matinee (with cast lunch after), Saturday night (I said heck no to cast dinner last night because I was too tired!!!!), and today is the last show at 2:00. I'm photographer of the show and I also photographed Carly's high school pop choir show (which was LAST weekend), so vie been editing every moment of my barely existent spare time. Saturday night I was up till 3:00 a.m. preparing/packaging four lacrosse teams' photo orders and working on a collage for the director of the play the kids are in.

So, guess what? Today I really hurt and feel like crap. I felt my knees getting "warmish" feeling last night, but today~full-on pain. Ugh. My knees, fingers, and ankles hurt. I feel flu-ish and yuck. I still have to take the portraits of the actors today before the last show which means setting up backdrop, lights, etc.

I guess I need to learn to NOT overdo it when I feel well. It's just...it had been so long and it was really nice to have energy and to not hurt again. I couldn't waste the opportunity to be productive.....

Still not 100% convinced I don't have sero-negative RA, but I guess 3 out of 4 doctors must be right.

Have a good day all and thanks for reading and for all your helpful and friendly comments.

Four Rheumatologists...Four different opinions

2010-11-07T20:10:00.000-06:00

Doctor one....Tests are all normal...Must be fine.
Doctor two....Undifferentiated Spondylarthropy or Seronegative RA
Doctor three..Fibromyalgia
Doctor four...Fibromyalgia AND something else that he needs/wants to figure out.

I saw one last (I hope!) rheumy on Friday. He was very nice. He took a lot of time before the exam talking to me about my symptoms, my experiences with the different doctors, my feelings, etc. After a thorough exam, he told me that he definitely agrees that I have fibromyalgia, but he doesn't think that's all I have. He did a lot of bloodwork, so hopefully we will figure it out this time. Once and for all. He says that I should hear back from him by a week from tomorrow.

Meanwhile, he said I should stop taking the mtx. If, after a couple of weeks, I flare big time...then we'll put me back on it. He took me off the arthrotec. (which allows me to stop taking the kapidex for my stomach). He changed my lyrica from 50 mg three times a day, to 75 mg twice a day. (easier for me to remember---I always forgot to take my middle of the day dose of lyrica for some reason). He wants me to switch from Effexor for my depression (that's NOT working) to Cymbalta as it is recommended for people with FMS. I have to go to a psychiatrist to get that going, since it's tricky weaning of Effexor and I've felt suicidal at times recently. (Ugh)

Anyway....I have to say that I had a really good day painwise! I was about a 1-2 this morning. After being at several lacrosse games, I started to hurt a bit around 2:30 so I went ahead and took a pain pill. The rest of my day was great. I had some fatigue during the middle of the day...and I'm exhausted right now...but it was a better day, healthwise, than any I've had for a very long time.

Praying for more days like this so that someday soon I can get a job, feel well, and start living a happy life again.

Hope you all had a good weekend and very little pain!
Hugs

A Second (or third) Opinion

2010-10-29T19:08:00.000-05:00

Today I saw another rheumatologist. I wanted another opinion. This doctor came highly recommended...heck, he was even President of the American College of Rheumatology--woohoo! He must really know his stuff, right?

I took all my medical records and walked into this (much nicer) office with high hopes. The nurse practitioner examined me, talked with me, and spent a decent amount of time asking me questions. She was nice. After a little while, she left to discuss my situation with the doctor. Fifteen minutes later, they both walked in. He shook my hand and almost immediately told me that after reviewing my records, there was NO WAY I have rheumatoid arthritis, undifferentiated spondylarthropy, psoriatic arthritis, etc. Since my tests have all been negative and based on my exam with the nurse practitioner, he believes that I have Fibromyalgia and Chronic Fatigue Syndrome. (oh, and severe osteoarthritis in my big toe) He says that my rheumatologist ALWAYS gives the same diagnosis. He implied that he is out of date in some of his testing methods and diagnosis procedures. WOW.

This doctor says I won't die from this. (DUH. I know that. But dammit some days I want to!)
He says I should stop the mtx and continue all my other meds. He says yoga and pilates would make me feel better. He, then, said that I could schedule another appointment with him if I need to in about 6 weeks.

I left there in tears. I feel like I am back to square one. I'm not sure what to do. Which doctor do I believe?

I'm so bummed.

If it's not one thing, it's five others...

2010-09-13T14:04:00.000-05:00

Haha! Just kidding, sorta. It's not five things, but one new one. I guess it's the extra folic acid I'm taking the day before, the day of, and the day after my MTX....but oh my WORD. I'm so nauseous. It's awful! I have what I would consider a verrrrryyyyy strong stomach. I've only thrown up a few times in my life. I feel queasy and icky when I get a stomach bug that causes everyone else to puke like crazy. I'm lucky in that sense.
HOWEVER...for about 3 hours yesterday, and for a couple so far today, I have been experiencing sudden bouts of nausea that are extremely close to causing me to throw up. My stomach feels horrible the rest of the time...gassy, queasy, the works.
Do any of you have problems with folic acid?

I will blog more later...when the room isn't spinning. After all, it is National Invisible Chronic Illness Week and I want to blog for the cause. What a great idea to spread awareness. God knows I was very much unaware of these invisible illnesses just a little over a year ago.

Not Doing Well

2010-09-02T18:31:00.001-05:00

I don't know why, but I have been wondering if I might have Lupus instead of "possible" psoriatic arthritis or undifferentiated spondylarthopy. I know that It was ruled out from previous blood tests many months ago, but from what I've read it is diagnosed by having a certain number of symptoms. I don't have the list, but I think I'm pretty close.

I've never gotten answers about the strange rashes that I keep having. I'm getting little circular sores that are raised and scaly. I'm a picker and these drive me crazy because I just want to get the flaky, peeling skin off. But--regardless--they are something that is new to me. I had never seen little lesions like this before I started getting sick.

I, also, get small patches (typically on my arms) that itch intensely and are hot to the touch. They usually are gone within about 15 minutes. They remind me of hives. I see no pattern in these. I get anywhere from 1 to 10 of them a week.

I'm not sure if it's the mtx or not, but I have to pee way more often than normal. Sometimes I go 5 times in an hour! It's not just a little each time either It's a normal amount. It's very annoying and I find myself avoiding drinking water so I don't spend all day in the restroom.

My tummy is a little upset lately as well. And the pain...it's no better yet. My knees are the worst offenders these days. I take two pain pills a day so I can function.

Stress level here is high as well. (sigh) That can't be helping me.

I sure hope all of you are doing better than I am this week! Hope you have fun plans for the holiday weekend.

- Posted using BlogPress from my iPhone

Location:Crestwick Dr,Murphy,United States

Methotrexate, do your thing!

2010-08-23T22:04:00.001-05:00

Today I saw my rheumatologist and we decided it is time to try MTX. I am taking 7 2.5 mg tablets a week. I hope and pray that this drug works. At the appointment, I also got a steroid injection for bursitis in my left hip (it hurt!!!) and a pneumonia vaccination.

The pain has been really, bad. As long as I don't have major side effects on mtx, things can only get better. Right?

- Posted using BlogPress from my iPhone

Strength

2010-08-21T03:26:00.001-05:00

I have been in the worst pain this week. I moved up my rheumy appt. next week from Thursday to Monday. I have to be strong, but I'm not sure I can go on like this. Please help. This truly sucks.

On Vacay

2010-07-20T16:32:00.001-05:00

I just felt like blogging because I am so down. It is so therapeutic to blog. Right now I should be pretty happy, but I am down and don't know if I will ever be up again.

I don't see my family nearly enough. We are in Tennessee and it is the first time I have seen my aunts, uncles, cousins, and even my mom in a long time. I have felt pretty well physically (except for during the long car ride from Texas-that caused mucho pain!)

So why in the world should I be so unhappy?

It's my marriage. It's very much on the rocks. It has made this trip really bad for me. I have cried so much and I have not been able to enjoy my relatives the way I should.

I'm trapped in my marriage, though, for many reasons.
1. My kids---I don't want them to have to change schools, lifestyle, and step-brothers. They are very happy here.
2. I have no job. He made me quit a job I loved at a school I loved. It made sense at the time and I honestly enjoy being a stay at home mom. But---I have no income from being at home.
3. This damn arthritis. I seriously don't know how I could work full time and be a single mom when I feel the way I have for the past 12 months. I hurt so badly when I have a busy day and I can't even imagine the fatigue I would experience. Ugh.

I try to "grin and bear it" for my kids. I love my husband at times and he makes me laugh....however, he is not real supportive of my condition---in fact, I really think he resents me because of it.

I will figure things out eventually, I suppose. It's truly scary feeling suicidal. I want to enjoy life again. I want to be happy.

On another note: my sister, who has had psoriasis for a long time, took one look at my skin lesions and easily identified them as being psoriasis. I guess I need to go to the dermatologist. If I am diagnosed with psoriasis, I will officially be diagnosed with PSA. Not that it really matters, but a name will make me feel validated in a way. "Undifferentiated Spondylarthropy" seems so......nonspecific. When anyone asks me what I have, I hate telling them. All I know is it is real---my rheumatologist knows it is from my bone and joint scans---and it would be nice to finally have a specific diagnosis.

Thanks for letting me vent, my blogging world friends.
Hugs,
Beth

- Posted using BlogPress from my iPhone

Quality of Life

2010-07-08T19:16:00.000-05:00

It has been a horrible couple of days. My pain level has been a 10 plus. I'm taking 2 pain pills a day and feeling guilty about it. I hate that. Why should I feel guilty for wanting a couple of hours of being able to function? I get so tired of hearing people talk about how dangerous pain meds are. Honestly, I think it is much more dangerous for me to feel nonstop pain all day long. It has been almost an entire year and I miss my old life!

My left big toe is getting worse. It now pops loudly when I move it. It's painful and actually freaks me out a bit. I definitely can't wear shoes still. My knees hurt a lot more than they used to as well. My middle back aches if I go too long without resting and it's been difficult to keep some of my fingers straight lately. (ugh)

My skin is a mess and I have progressively gotten more and more into the habit of picking it. It's dry and flakey and I pick it when I'm not thinking about it (ie while I'm reading/driving/editing photos). I'm pretty disgusted with myself.

So, yeah, my quality of life is pretty miserable. I want to be a good mom and wife, but I feel as if it's not happening. I go back to the rheumy in a week. I'm not sure what is going to happen, but I figure an adjustment or change in meds is probably in my future. I am terrified of methotrexate, but I will try anything at this point.

I hate complaining, but I need to vent. It's either vent or bawl my eyes out....

- Posted using BlogPress from my iPad

What's the Deal???

2010-05-08T17:43:00.000-05:00

I've been avoiding posting because I'm so sick of whining. Ugh. I feel like that's all I do anymore. I hate it.

I went to the rheumy on Monday. I had a noon appointment, but didn't get in until 3:30. Oh well....this doctor is worth it. At the time, I had had about 3 good days. When I say good, it means the pain was probably about a 4 most of the day and I didn't need to take a pain pill at all. He upped my dose of alzulfidine to SIX a day (gag) and he did a chest x-ray. I had been having some pretty bad chest pain in the upper left part of my chest. He listened to my lungs and they were clear, so we'll see what the xray shows. (I will call for those results Monday)

Telling the doctor I was doing better must've jinxed me because the past few days have been HORRIBLE!!! The pain in my knees is so bad and I'm stiff all day long. I walk super slowly and I feel miserable. I don't know what happened as the weather has been nice and I've been taking my meds. All I know is it really sucks.

I know my husband is so sick of me. He doesn't even ask how I'm feeling anymore. He has even mentioned that I might be using the pain as an excuse not to go out. I would LOVE to feel well enough to go out! I really hate being at home all the time.

Unfortunately that's my update. I'm trying to stay positive. I'm trying to be happy. But I'm not. I'm depressed and down and really worried that I'm never going to be pain-free again.

WOW!!!

2010-04-07T16:29:00.000-05:00

Hello everyone! Today is a very important day. Today is the first day since last July that I have had NO joint pain at all! The day isn't over as it's 4:30 pm, but I think this is a good sign, don't you?

I went to the rheumy on Monday and all my blood work looked good, so he upped my dose of azulfidine. I am now taking 4 a day. I've decided that two in the morning and two at night is best for me.

So...today WOULD BE a perfect day, however, my stupid stomach is a mess. I'm nauseous and my tummy is super rumbly. I'm resting right now in hopes it will get better. I want to enjoy the day.

I'm having some girl issues. I'm not going to go into detail with those issues because I'm not so sure they are important (or truly issues) at this time.

I hope everyone is doing well. Enjoy your day!

It's been a while....

2010-03-13T13:45:00.000-06:00

I'm so sorry for not updating, but quite frankly I've been so depressed lately that it's hard to get the motivation to do anything.

The Plaquenil didn't work for me. It caused me to develop a bad rash all over my body, especially on my arms. So...I went to the doctor, got a shot of something, and stopped taking the Plaquenil. A week later, I started Plan B: Sulfasalazine. The doctor has me taking 1 pill a day for a week, 2 pills a day for the next week, and 3 a day the third week. After that, I go in for blood work. I guess SSZ sometimes affects blood counts.

Meanwhile, I am on a Prevpac for the h.pylori. It really bites as it is 4 pills in the morning and 4 at night for 2 weeks.

I don't know which of these is responsible for it, but I'm getting the most awful taste in my mouth a few hours after taking the medicine. It's kinda metallic-y.....it's gross.

Anyway....depression has kicked in BIG TIME for me. I'm truly struggling. I feel alone and worthless right now. Thoughts of suicide are becoming more and more frequent. I don't know how long I'll be able to continue to go on the way things are going in my life.

I'm really lonely right now. Wish I had friends in town who understood what I'm going through. I wish my husband understood. I feel like I'm on an island and I don't like it at all.

Update...After Almost Two Weeks on Meds

2010-02-23T18:51:00.000-06:00

It's been a while since I've updated and that's because...frankly....I feel like CRAP. I guess the medication doesn't agree with me very well. I feel nauseous a lot of the time and have a lot of stomach pain. I've been extremely tired-to the point it's hard to function-and that's no fun. Also...the pain has been very bad. Most days it's around a 7, but I have had several days of 9-10 pain levels. The pain is still in my arms and legs, but the worst in my foot and now my knees are really starting to hurt.

I have an appointment to see my GP next week about the h. pylori infection, but other than that I am just waiting for the Plaquenil to start working.

PLEASE let it start working soon. I am barely functioning right now. I'm missing out on life and I hate it. I can't go on like this. I'm so miserable.

Houston We Have A.....

2010-02-10T14:16:00.000-06:00

DIAGNOSIS!!!!

I got in to see my rheumy this morning because my pain the past two days has been HORRIBLE and they didn't want me to have to wait until the 19th. He has diagnosed me as having Undifferentiated Spondyloarthropathy. I can barely pronounce it, but it's what my doctor thinks I have. I will from here on out refer to it as USpA. You can read about it here, but basically I get the impression that it's a seronegative (meaning I don't have the positive rheumatoid factor in my blood tests) rheumatoid variant arthritis. It is chronic, but seems to be fairly easy to treat.

I'm now going to be taking a drug called Plaquenil twice a day. It's a slow-acting drug, but it's the "least toxic" of the drugs we can try, so we'll start with it. I might not see results for 2-6 months. (ugh)

He saw a lot of inflammation in my scans and I also have osteopenia (so I will be taking Caltrate). I have a vitamin D deficiency so I'll be taking lots of vitamin D for a while. I will continue to take the Lyrica three times a day, Arthrotec twice a day, as well as that stomach medicine that I can't ever recall the name of. Oh...I also have an h. pylori infection that I have to go see my GP to get taken care of.

LOVELY, eh? Should be a fun journey.

But at least I have an answer. And a plan. And I'm going to take a nap now.

Thank you for all the support. It means the world to me!!

Not Sure How To Manage Pain

2010-02-07T21:45:00.000-06:00

Well.....today's pain was a 9 all day long. I've been taking all my medicine and the pain is worse than ever. I don't know how to handle it. I really don't. It's not fun.

I think we are getting close....

2010-02-03T08:45:00.000-06:00

to a diagnosis!

I went to my new rheumatologist yesterday morning. Wow. After he took my medical history (in which he asked more questions than most job interviews I've been on), he did a very thorough exam. Then he brought me back into his office to explain what he was thinking, give me some reading material, and let me know the plan of action. I, then, had 7 vials of blood drawn, about a zillion x-rays (on the HARDEST table in the world-ouch!), and a bone density test. Today I am going for a bone and joint scan. I feel pretty confident that my doctor will figure something out with all of these test results. I go back on the 19th and he will go over my results with me then.

For now, he is leaning toward Psoriatic Arthritis. He put me on Arthrotec 75 twice a day and also another medicine (The name escapes me right now) to help counter potential stomach issues as Arthrotec is an NSAID.

My pain in my left foot/ankle/knee was horrendous last night. It kept me up during the night for a while. Hopefully this new drug will start working soon. I'm really ready for the pain to be gone for a while.

I Want To Give Up Now

2010-01-27T11:57:00.000-06:00

How do you go on when the quality of your life is no longer anywhere near what it used to be?

How do you go on when the pain is so bad, you cry several times a day?

How do you go on when you can't even enjoy time with the people you love the most because of the pain you are experiencing?

How do you go on when you are no longer the mother your kids deserve because you hurt so bad so much of the time?

How do you go on when you feel so alone because nobody understands what you are going through?

I don't know the answers to these questions, but I wish I did. I'm not sure I can go on much longer like this.

MRI Time

2010-01-25T23:17:00.000-06:00

I'm having an MRI of my knee done tomorrow at 7:30 am. I'll have my ankle and foot done on Friday morning. Not sure what can be seen or determined by this, but hopefully something.

Not too much pain today, but my low-grade fever was back and I was extremely tired.

I'm feeling down....and alone. I could use a friend or two right now.

GROSSSSSSSSSSS!

2010-01-24T16:48:00.000-06:00

That's what my kids say when they look at my hands. Isn't that nice? Here is what my hands look like after being out in the cold for a while. This picture was taken after being inside (in a heated car) for 30 minutes.

Isn't that lovely? That's an example of my Raynaud's. My hands aren't typically as bad as my feet, but still...it's not a very fun condition. My pinky and forefinger were completely numb for an hour. I've had Raynaud's for many years, but only rarely did it act up....Until lately. Now it happens all the time. Yuck.

Today I taught Sunday School. By the time it was over, I was HURTING! My legs and arms hurt like crazy and I was exhausted. I hate this. I really do.

I go back to the orthopedic surgeon tomorrow. He's the one who prescribed the Lyrica. I will tell him that I feel a *little* better pain-wise, but it's definitely not gone. I also will talk to him about how my toe still hurts, but now my ankle and knee are hurting as well.

I talked to another lacrosse mom at Jake's practice today. She has been having similar medical problems. Hers have been going on a bit longer and a big difference with hers is that her ANA test was very positive and I believe her RF was positive too. Mine were both negative. It was nice to talk to her. She is a neat person and I hope she and I will get the chance to get together sometime soon.

Thank you to those of you who have commented. It means a lot to me. I'm learning a lot and it helps to have support from people who understand what I'm going through.

The Straw That Broke MY Back

2010-01-22T18:36:00.000-06:00

Today the pain has been about a 6. It hurts and I feel tired and nobody in my life understands. (Poor Me, Right?)

I called my rheumy today because I am almost out of my pain meds. I only take one a day and I save it for when I feel my worst and need to function. If I don't need one, I don't take one. I'm NOT abusing them. Hell, I've lived for 7 months in constant pain and it's nice to finally get a few hours of relief in my day.

When the nurse called me back, she said that my dr. doesn't want to give me a refill, but instead wants me to go to a pain management dr. I'm so freakin' sick of her pushing me off to other doctors. That's all she does. It is so annoying.

And get this....she said: "The dr. wants you to go to a pain management specialist if you are having pain still, since all the tests show you don't have arthritis." That did it. I will be calling and asking for my files to be sent to the new rheumatologist I am going to see in a couple of weeks. I wasn't sure I was doing the right thing, but now I KNOW I am. In my mind, those words say, "I think this pain is in your head, chick, so leave me alone."

I just want to cry.

"I get aches and pains too"

2010-01-22T08:34:00.000-06:00

I woke up with my foot numb this morning. The pain in my ankle and knee is a lot worse. My husband tells me it's just part of getting older. That he gets aches and pains too. This makes me angry. It really does. I feel as if he is minimizing my situation. I swear, I hope and pray SOMEBODY gives me a diagnosis someday soon. I can't take this much longer. My body is telling me something is wrong. Just because the blood tests aren't, doesn't mean it's all in my head. I want someone to believe me and take me seriously. I want to feel better.

I'm going back to bed.

Crap!

2010-01-21T10:46:00.000-06:00

That's all I can say right now.

I just got back from another water aerobics class. It was okay, but there were several exercises that bothered me. It's mostly my left side that is messed up right now. My knee was hurting and popping during a couple of exercises. It felt really weird, so I stopped doing whatever it was we were doing at that time. My ankle and toes hurt and couldn't move the way she was having us move them during the stretching part at the end.

Now I feel really weak. I took a shower when I got home. While in the shower, I was shaving and realized I was having a hard time holding the razor. WTH? It didn't hurt really, just felt like my hand was too weak or something.

I'm scared. What is wrong with me????

Lyrica Helping??

2010-01-20T23:32:00.001-06:00

I am beginning to think the Lyrica is working. I've been almost pain-free today. I'd say maybe a 2 out of ten. Wow! It's a good feeling.

So...does this mean that my pain is caused by fibromyalgia? Lyrica is prescribed for fibro, right?

I'll have to ask my doctor.

Speaking of doctors.....I am going to a new Rheumatologist on Feb. 2nd. Get this: My appointment is at 4:00 A.M!!!! Can you believe that? The receptionist told me that the appointment will last 4-5 hours. That makes me feel good because at least he is thorough. My current rheumy hasn't spent that much time with me in all of my appointments combined!

I'm going to water aerobics again in the morning. I was planning on going tonight, but my daughter had a school meeting that we both had to attend. I hope the workout feels good again.

I'm feeling pretty happy right now. At least about my health.
Goodnight!

A small glimmer of hope....

2010-01-18T22:59:00.000-06:00

I went back to the orthopedic surgeon today. He gave me a steroid shot in my foot last week for what he thought was gout. Besides hurting like hell, it only made my foot feel better for about 24 hours. Hardly worth it.

Today I told him that the pain is still there....he did an x-ray thing (I cannot remember what it was called, but it was cool) on my foot. He never saw the x-ray my rheumatologist supposedly sent him. All he saw was arthitis in my big toe. It wasn't enough to cause the pain I'm having, though. He also noticed my Raynaud's, because it was pretty bad today. (not sure why because it was warm in the room and outside even)

We decided that I am going to start the Lyrica to try to get the pain under control. I take 50mg three times a day. He thinks I will know if it helps within a week, so I will go back to see him next Monday.
He mentioned Scleroderma, but I don't know anything about that. I need to find a new rheumatologist. I really need some answers.

The pain today has been about an 8. After grocery shopping, I felt like I had been run over by a truck. The Lyrica makes me feel loopy so far. I hate that, but I'm hoping it passes...and works for the pain too.

I took my first water aerobics class tonight. I LOVED it. It felt so good moving for an hour in the water. Water is my best medicine. While I'm in the pool, I feel great. I've noticed that since my symptoms started back in July. I take at least one hot bath a day.....sometimes three. My goal is to workout at least 3 times a week. I've gained 3 pounds on that freakin' Prednisone....I want to lose that and about 10 more.

That's my update. Thank you for those of you who are reading. I'm enjoying the blogs I've found and read lately. It's great to know I'm not alone in the way I feel physically.

Blogs

2010-01-16T13:24:00.000-06:00

I'm a sucky blogger. I never seem to stick with it for very long. BUT....I want to try to change that.

I love reading blogs. I've been searching for blogs written by people who have RA, Fibromyalgia, or other chronic conditions. It has been very interesting and has helped me to see that I am not alone in feeling scared, weak, and confused. There are many people who didn't get a diagnosis right away and that makes me feel better too. I know that I will find out what's wrong with me eventually.

Today's pain has been about a 9 out of 10. We are in Baltimore right now for a lacrosse convention my husband is attending. I'm able to just relax here in the hotel room, which is nice, BUT I think the lack of activity is making my pain even worse. I've gone down to the pool and hot tub both days so far---which really helps the pain---but the relief is only temporary. We have had dinner plans each evening, which entails putting shoes on---an excruciating endeavor with my left foot in such pain. So, to get through, I take a pain pill right before we head out. It seems to take the edge off and allows me to almost walk without limping or wincing in pain too much.

I hate this. I really do.

I want answers!

2010-01-15T13:36:00.000-06:00

It's been 7 months now. I've had pain in my arms and legs for 7 months straight. I've had fatigue that has made it next to impossible to accomplish my daily chores around the house. I feel like an old woman, yet I'm only 41.

I've seen my family doctor, a rheumatologist, and infectious disease specialist, a vascular surgeon, and on orthopedic surgeon. I've had more blood drawn than I care to think about and I've had a couple of x-rays.

Results? No answers. Everything is normal. I have Raynaud's.....which I've known for a while and it doesn't bother me much at all. And just a few days ago, I was told the excruciating pain in my foot that hit me a couple of weeks ago is gout. GOUT?

The rheumatologist put me on prednisone (a low dose, I guess). I felt less pain while on the 20mg but as I started to decrease the dose to wean off, the pain returned to normal. I hate prednisone, by the way. It makes me an emotional mess!!! I will NOT take that again unless I absolutely have to.

I've struggled with not knowing exactly where my pain is located....and I know that sounds weird. I couldn't tell if it was muscular or in my joints. I believe it is in my joints now. This foot pain seems to be starting in the joint at the base of my big toe and I feel how the pain radiates throughout my foot and even up my leg at times. I feel as if my wrists and fingers are getting stiff. My knees and ankles feel that way too. It could be my muscles aching...but I am thinking more that it is in my joints.

Anyway....I want to feel better. I want the pain to go away. I know none of this can happen without a diagnosis. I've heard the word "fibromyalgia" many times and I admit that some of the symptoms match up quite perfectly. I don't know that I have the "trigger points" that I've read about, but I do have many of the other lists symptoms. I've also had many people tell me that it's probably just stress. I've been told to "be happier" and things will get better. Exercise and I'll feel great. Well...I'd love to do both of those, but the way I feel is getting in the way.

I want to try to keep this blog going as a journal....so that maybe I can look for triggers or patterns. Anything to help get to the bottom of my mystery health situation.