I've Moved....

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Praise You In This Storm

Praise You in This Storm words by Mark Hall/music by Mark Hall and Bernie Herms I was sure by now, God You would have reached down and wiped our tears away, stepped in and saved the day. But once again, I say amen and it's still raining as the thunder rolls I barely hear You whisper through the rain, "I'm with you" and as Your mercy falls I raise my hands and praise the God who gives and takes away. Chorus: And I'll praise you in this storm and I will lift my hands for You are who You are no matter where I am and every tear I've cried You hold in your hand You never left my side and though my heart is torn I will praise You in this storm I remember when I stumbled in the wind You heard my cry to You and raised me up again my strength is almost gone how can I carry on if I can't find You and as the thunder rolls I barely hear You whisper through the rain "I'm with you" and as Your mercy falls I raise my hands and praise the God who gives and takes away Chorus I lift my eyes unto the hills where does my help come from? My help comes from the Lord, the maker of heaven and earth I lift my eyes unto the hills where does my help come from? My help comes from the Lord, the maker of heaven and earth Chorus, Thank you, Amanda for showing me this song!

GOD'S GRACE

I did not know His love before The way I know it now I could not see my need for Him My pride would not allow. I had it all, without a care The “self-sufficient” lie My path was smooth, my sea was still Not a cloud was in my sky. I thought I knew His love for me I thought I’d seen His grace I thought I did not need to grow I thought I’d found my place. But then the way grew rough and dark The storm clouds quickly rolled The waves began to rock my ship I found I had no hold. The ship that I had built myself Was made of foolish pride It fell apart and left me bare With nowhere else to hide. I had no strength or faith to face The trials that lay ahead And so I simply spoke His name And bowed my weary head. His loving arms enveloped me And then He helped me stand He said, “You still must face this storm But I will hold your hand.” So through the dark and lonely night He guided me through pain I could not see the light of day Or when I’d smile again. Yet through the pain and endless tears My faith began to grow I could not see it at the time But my light began to glow. I saw God’s love in a brand new light His grace and mercy, too. For only when all self was gone Could Jesus’ love shine through. - Author Unknown -

Doing better today

I'm doing better emotionally and a little bit better physically. I had a hard time going to sleep again b/c of the pain. I had to take a lunest and turn on the Gilmore Girls and sleep on the couch. However, today I haven't had to take any pain meds. My lower back is a little bit sore, but slouching hasn't helped I'm sure. This was the shortest "flare up" yet. There's hope!!! I overslept again. K won't be very pleased, but at this point I really could care less. He's one of the obstacles as to why I can't take stronger pain killers unless I'm practically insane with pain. But that's another long story. I laid there crying myself to sleep last night thinking about how undertreated chronic pain is. It's ludacrous!!

This Sucks!

I hurt all weekend and even more today. I had my PT eval today. I'll go 3x a week. They found many things wrong pelvic wise that will be worked on to help relieve my lower back pain. They also will work on teh cervical spine as well. Rhonda

So far, so good!!

So far today I haven't needed any pain meds. Not even an NSAID. Is this the beginning of the end? Do I dare hope?

Not a bad day really.

It's almost 4pm Friday. This week has been so long and this afternoon is just dragging!!! Feelin' pretty good today. I forgot my lumbar support, but my back isn't doing too bad. Last night I tried the last of the NSAIDs I was allowed to take, hot/cold therapy (even took a hot pad to church) and I still couldn't get relief. I took a Lunesta in hopes it would just let me sleep. Nope! An hour later I was down in the couch and popping Prince Percocet to get relief. I tried hard to not have to take one, but I couldn't help it. I needed sleep. I was out like a light when the pain went away.

Grrr...!

Well, this morning got off on a bad start. Overslept b/c I was hurting and laying there waiting for the Indocin to kick in. Got here at 10am which means I now have to work until 7pm. *sigh* I dropped Gracie off at doggie daycare aka Nana & Pa's house aka Keith's parents. They have a maltese as well, Nony, and so the two love to play together. Now I don't have to worry about getting home after work to potty Gracie and then feel guilty about putting her back in her digs and heading to church. This way she gets to be loved on and play all day. My left wrist feels like it's broken and is radiating up my arm. Grrrr!! The have another low front on it's way in. I remember a time when I loved rainy days, now I hate them. Rhonda

Out of Hibernation- Thoughts on the Weather

I have been really enjoying this new summer weather. I love the warmth and sunshine- such a welcome relief from the dreary, gray days of winter. Although this seasonal metamorphosis happens every year, I can't help but be amazed at the changes. The days are longer and brighter and I can spend time each day outside, watching the flowers grow, or the white clouds move across the swirling blue sky. I feel as though all winter I have been "hibernating" and now that summer has come, I can get out and enjoy the things I have missed. Unfortunately, much of my pain is effected by the weather and I feel completely different in good weather and bad. In the rain my bones ache, and in the cold I can hardly breath. I can watch the weather report and know which days will be good or bad, based on the weekly forecast. I have learned to plan my amount of "spoons" based on either sun or rain. There are times when I think I live two different lives dependent on the weather. I feel healthier, I get more accomplished, and I am genuinely happier in nicer weather. Something as simple as the effects of weather is something most healthy people take for granted. They will not have to cancel, or change their plans for the day based upon the weather. They do not dread a certain season, due to how it will make them feel. I used to spend all winter looking forward to spring, and spend all summer dreading the approaching cold season. It was a rollercoaster ride of emotions. Since it is hard to spend most of your time looking forward to the future, or trying to make up for the days past, I often grew resentful of time lost. I am learning to appreciate the good days and not focus on the bad. I look at summer as a breath of fresh air, instead of the reminder of the healthy woman I was. I love feeling good and I plan on taking advantage of every moment I have, without anticipation of the days I may not feel my best. Summer is a wonderful treat, a glimpse of a day filled with spoons, possibilities, and hope. I want to live each day with a renewed sense of enthusiasm. I long for sunny days filled with excitement, instead of cynicism. I don't want to be hardened by my illness and I will work hard not to be. Those are my summer goals. I do not want the weather to dictate my demeanor, or my level of enthusiasm and passion. I no longer want to live in a cloud because of the hint of rain. I want to have the sun shining bright in my heart even if it happens not to be in the sky. copyright 2005 butyoudontlooksick.com

Never ask - "How are you feeling today?"

It's taken me a long time to get out of the automatic habit of saying, "How are you?" when I see someone. That question would be all right to ask most healthy people because the spontaneous response of "fine" would be appropriate. I have discovered that people who are ill hate that simple question. Most of the time the answer is not "fine" and yet they feel obligated to answer with that very response, so as not to disappoint. When I questioned my daughter Christine about giving such a positive response, on a day when she felt just awful, she said "Mom, people don't always want to know the real answer to that question. Also, who really wants to go through a litany of symptoms and aches and pains? It's easier to just say-fine." You have to pick and choose whom to be honest with and who really wants that quick succinct answer- "fine." Recently, my 80 year old mom has been recuperating from major knee surgery. At the beginning of her recuperation, when I went into her hospital room I slipped back into the bad habit and the cliché of saying "hi Mom, how are you?" She would then tell me one or many adjectives that fit the description of lousy and our time together inevitably started off on a negative note. Now, I begin the visit by asking "How was your day today? Anybody call or visit?" I get lots more information and at this point, I kind of know how she feels and when she is having less pain. As most of you know- pain has a way of showing itself on your face. It doesn't need an announcement that it is here. So the next time someone asks you "How are you?" - be patient, it's become more of a greeting than a true inquiry. And the next time you see someone you know who is sick or recuperating ask "What is new?" or "How was your day?" If they want you to know about their health, they will tell you. So to all of you out there- "How was your day?"..... Great, I hope. by Janet Miserandino © 2005

Today isn't so bad.

Tired, but not falling asleep at my desk. Not real sore either. Keith has the day off. The bum. He's leaving for a conference Saturday and it starts on Sunday, so this is his day off to compensate. It's a sunny day, so he picked a good one. It's lunch time. I didn't bring a lunch, so I have to figure out what I want for lunch. Decisions, Decisions. Rhonda

Sigh

Who woulda thought a two letter word would be so hard to say?? I'm learning to say "no" more often now too. Keith encourages me to use him as a scape goat if necessary (and I do). Sorry you've been out of sorts. It's so hard to deal with the unknown and chaos. HUGS!! Here's hoping you've been having some "spoon filled" days.

It's a "don't touch me" day.

I woke up with a migraine (the new meds were 95% effective) and my WHOLE body hurts. I don't even want to be touched is how bad I hurts. Every square inch, including my joints hurt like the dickens today. I couldn't drag my butt out of bed until 11am and didn't get to work until 12:15pm. *sigh* I'm working only 6 hours today. Maybe I can make them up over the course of the week. I can't believe I hurt so bad today. Yesterday was AWESOME and I didn't over do it. I just don't understand. There is no rhyme or reason to all this.

Just when you think you're in the home stretch.....

Today is a bad day. I spent most of the morning in bed with joint pain. My back is still pretty sore. I'm only working 4 hours and working the evening to get them. *sigh* I had my follow up visit about the CT scan. Normal. Bloodwork results. Normal. No idea what's triggering the migraines. She gave me samples of Relpax to see if they work. She wanted me to try it last time but she was out of samples and tried Maxalt inside--they didn't work. I'm also being referred to a ANP who used to work under a Neurologist and specilizes in headaches. She apparently has a very tedious and lengthy process for pin pointing migraine triggers. This will be a good appointment. My platlets were high which this thinks could have been dehydration (not enough water that day) and my sugars were high and thinks that is b/c it was 6:30pm. She just wants a copy of my blood work from Dr. T next month (I also requested that she send these results to Drs. T & C).

No headaches today!!

Today is a GREAT day!! No headache. Slept great. Not tired. I even complete dried and curled my hair this morning. WOOHOO!!! More days like this would be great!!

Another frickin' all day migraine!!!!!

I couldn't even get up to go to church. Shoot, I barely even remember DH leaving for church. It's down to just a headache now. Please dear Jesus, I pray they'd find a solution to all this.

Migraines forever??!! This is so unfair!

Well, had the CT Scan today. Pretty quick. It's nice working next to the hospital. The scan itself was only 5 minutes. Dr. T's receptionist called me back and relayed from Dr. T that migraines are a part of Spondyloarthritis? WHAT?! You freakin' mean I have to live with these FOREVER?! It's just not fair. What the hell did I ever do to warrant this crap??

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I had a migrain ALL DAY!!

Today is a GREAT Day!! I can sit, type and walk!!

Oh what a zipadeedodah (sp?) day!! I hardly hurt at all today. I can sit, type and walk. Oh how wonderful!!! Now to get cracking on my office projects and get a bunch done today. I hope this is the beginning of the end. Please oh Please!! Let me have *more* days like this!! I didn't sleep all that well last night. I kept waking up. But surprisingly, I'm not tired. Go figure. I did take my Hydrochloroquine earlier in the evening and I think that helped with the morning grogginess I was having. The nausea side-effect didn't show up last night, so maybe I'm adjusting? I cancelled my trip with DH to Kentucky on Saturday. I was too sore, too exhausted, and too nauseated to make a 14hr flight. DH said that the fancy dinner wouldn't have been enjoyable for me. They had "all you can eat" shrimp, crab and lobster. I don't even think I could have sat in the room with that much shellfish. I keep coming across things that tell me that my decision to stay home was a very good one.

We have a Dx & a Treatment Plan

ANSWER: Spondyloarthritis with possible psoriatic variant (Psoriatic Arthritis w/Spondylitis) TREATMENT PLAN: 0.6cc Methotrexate (low lose of a chemo drug) weekly sub-cutaneous, 200 mcg Folate daily, 200mg Hydroxychloroquine (anti-malarial drug) daily. Clinoril as needed (and hopefully not need Ultram, Cymbalta, or Percocet soon). I'm still learning what this is b/c I skipped over it in my research. Guess that's why I'm not the dr., huh. Anyhoooo, she picked out all the spots on the x-rays that told her what she needed to know. Boy, once she pointed them out I was like , I didn't see that before. Based on my negative RA & ANA tests, patient history and clinical exam, she says Spondyloarthritis. She said that it is often mistaken for Fibromyalgia b/c it cause tendinitis near the pressure points used to Dx Fibro. She will wean me off the Cymbalta once we are confident the treatment plan is working. I might request to stay on a lose dose until after the adoption/post-adoption let down have passed. I think I still need the extra boost emotionally (especially after last week/weekend). I am to start to wean off the Ultram and try to only do the Clinoril. She upped my Clinoril to 3x daily for a week and if my left elbow and hip don't improve she wants to do a corticosteriod shot ( !). We did catch this early enough to hopefully delay further joint damage and to prevent future joint damage. The goal is to get the inflammation down and keep it down. From what I gather, remission is when the inflammation stays down (Tracie/Karrie/Heather correct me if I'm wrong). This is a progressive auto-immune disease, but Dr. T seemed to think that we caught it early enough and there are enough treatments out or coming out to help keep things under control. The caveat is that to accomplish this, they have to dink with my immune system. Oh joy of all joys. Methotrexate will somehow suppress and tweek my immune system to get it to calm down. Really don't quite understand how all this works, but I will be learning soon, that's for sure. She gave me the first shot today and showed both K & I how to do the shot. I think I can do it myself, wasn't too bad. At least it's not 50x a day. If not, I'll just visit friends in the medical community once a week. Good thing I have no uterus, so we don't have to worry about prenancy issues. I will have b/w every at 6 and 12 weeks to make sure that my bone marrow isn't screwing up my blood cells. Ah, the risks and benefits. At this point I'm thinking the benefits out weigh the risks. As Dr. C said, we might not like the Dx, but at least we have a treatment plan. I might be doin' marathons come September (by my birthday!!)!!!! {fingers crossed/praying} Just think, I could be in remission and doin' fine when I hold our Ladybug for the first time. Now wouldn't that be a wonderful experience.

Weekend hopes vs. Weekend reality....

We didn't finish the project Friday. *sigh* So I couldn't accompany DH to Seward this weekend. Oh well, I was so sore and tired today, I didn't get out of bed until 3pm. I woke up once when Pastor E called to let me know that since he can't get a firm head count, we'll go head with potluck since not every knows about the change he wanted to make this month. I thought I just sleep a few more minutes and get up and shower. Next thing I know, it's 3pm!! I've spent the rest of the day on the couch. I get up periodically and walk around the house since inactivity makes things stiff and sore. I had to medicate with a higher dosage of Percocet than I have in a while. *sigh* I so wish they'd find answers to all this crap. Poor, poor Gracie was forced to stay in the bedroom while I slept. She had a potty pad, but she hates to use it, so she was flying down the stairs when I finally rolled out of bed. That poor dog. I left the back door open so she could lay out in the sun this afternoon. Once the sun was no longer in the back yard, she started laying in sun spots in the house. It was hilarious to watch her move every time the sun spot moved. Silly dog. I didn't make it to work today, obviously, so I really have to go in tomorrow--no if, ands or buts about it. I so hope that Monday goes better.

RA Test Results are in....

None of the bloodwork indicates RA. So either I'm so early, they can't tell or it's viral. Still no definative answers to my joint pain. *sigh* ESR = Normal ANA = Negative Hep C = Negative (thank GOD!) CCP = Normal RF = 5 CBD - Hematocrit = 34.9% (normal = 35-45%) - Hemoglobin = Normal - WBC = Normal X-Rays - Hands = Normal - Feet = Normal - Chest = Normal

What a day!!

What a day. Rheumatoid Arthritis isn't ruled in and isn't ruled out. It's the path she's going down though. She's repeating the RA Factor, ESR, C-Reactive Protein and ANA tests. It will be interesting to see if there is an increase since the last tests 5 months ago. The other bloodwork is Complete Metabolic Panel (I think this kidney/liver function and they do it before my surgeries), CBD (Diff/PLt), CK, Total; CCP AB IGG, Hepatitus C Viruse (Keith says I'm fine unless I've been swapping blood with anyone ). Then the fabulous PIAC for a complete urinalysis (ack! I ate a poppy seed muffin for breakfast! ). She agreed with the new treatment plan. She said that if the Clinoril doesn't provide relief, she'll do an injection when I see her next time. Man I hope the Clinoril works. I did pat myself on the back for finding my own NSAID though. She said that my elbow pain is more like tennis elbow and my hip pain is more like bursitis? Anyway, I'm so luck to never have just *one* thing going on at a time. NOT! I do like the Rheumy. She is very nice, thorough, listens, compassionate and included Keith in our discussions. I was glad to have him along b/c he was able to shed light on a few things or "rat" on me in other things. She was very interested when he said that I move to the couch some nights, that I had an unknown rash, whether Prednisone helped at all (couldn't say b/c we were in California the next day), etc. She even asked him about different things that *he* might have noticed. I will be getting x-rays done on my hands and feet to see if there is any noticable inflammation/damage to the joints. She also wants a chest x-ray in case there are other medications that she might need to Rx (this was an addition as I was walking out--kinda scary to think what meds would require a baseline lung x-ray. ). I walked away feeling like we'll never figure this out and I'll have to deal with it forever. I keep feeling like I'm chasing a ghost. Only I can tell it there, but no one can find proof.........

I GOT AN APPOINTMENT!!

The rheumatologist herself called and offered me a cancelled appointment for tomorrow!!!

A game plan of sorts....

Here's the game plan and I hope it works: I can take up to 200mg of Ultram ER a day (opiate agonist--works like an opiate but contains no opiates) I can supplement up to 400mg of Clinoril a day (NSAID approved for long term use for acute/chronic pain) I found this and told Celeste who took it to Dr. Chester. Dr. C said she likes patient who do their research. I have a Rx for Percocet to take for the break through pain. It is a secondary treatment and only for when the to primary drugs aren't effective (basically on the bad days). I let Celeste know that this weekend and today were good days (today being the best) so I might be inbetween flare ups. I have know idea for how long, but I'll enjoy it while it lasts that's for sure. Keith is better this time about going back to the narcotic. He can see that Dr. Chester and I tried to get me on to another treatment plan, so he really can't say much at this point. Which makes me wish less often that he could spend a day or two in my body

May 11th ~ Good day....meds still on order.

Wasted trip to the pharmacy!! The shipment didn't come in. That just burns me. I requested the confirm the order tomorrow so I don't have to make a THIRD wasted trip. Geez. I guess I wait another day....this is getting sooooo old. I sure hope that tomorrow is at least as good as today was. *sigh*

May 10th ~ Hanging in there...

Pain level is 5-6 with Ultram ER 200mg. I have another message in for the nurse. I hate to be a pest, but I frickin' hurt!! We've got to figure out something to help me make it to July 12th. *sigh* Last night I slept on the electric blanket on top of the memory foam pad with the ceiling fan going. Heaven! I also took a Lunesta, so I slept *really* well last night!

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My Ultram is being upped to 300mg, taking 100 mg 3x a day. They are taking me off the Ibuprofen (2400mg) and putting my on Dolodid (500-1000mg) 2x-4x a day as needed for break through pain. We are hoping this will work.

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Meds on order. Grrrrrrrr.....after a long wait in line. Should be in tomorrow.

May 9th ~ Better Days

God bless the manufacturers of Ultram ER and the electric blanket! We upped my Ultram to 200mg b/c I had major break through pain when the pressure dropped. It's not 100% effective, but it's making quite a dent in the pain. My joints are sore, but I can concentrate and function. Blessed change. I couldn't sleep last night, so I got up and went down to the couch and watched the last episode of CSI: Season 4 (boy did they leave the fans hangin' on that one). I decided to sleep down there on top of the electric blanket and see if that helped at all. Oh! Relief! Of course when I got off the blanket, the relief didn't last for long, but at least the Ultram had a chance to keep on top of the pain. I went for a walk last night with K and Gracie. 1/2 mile (our loop). I think I walked too close to bedtime though. I'll have to do it earlier in the evening. I actually was into work by 7:30 this morning. I haven't done that in MONTHS!! I even took out one trash can, hauled 6 bags of clothes out front for ARC, fed and pottied the dog and was out of the house before 7am. K was checking me for fever. Hopefully I won't regret this tomorrow.

May 8th ~ Upping the Ultram & it snowed today.

Dr. office called and my Ultram is being upped to 200mg and the nurse is going to talk to Dr. C about having an Rx on hand for the bad days. she approves it. *sigh* July 12th seems soooooo far away. Off to get some work done.

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Ah, the 2nd dose of 100mg is bringing the pain down. I hope it takes it at least to a one.

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It snowed. 8th of May and it snowed!! This truly *is* the winter that WON'T GO AWAY!! It's been a rough four days. Thanks to the barametric pressure drop on Thursday. It's been raining all weekend and now it's snowing. Just great! NOT! We are upping the Ultram ER to 200mg daily to see if that will keep a handle on things (so far it's bringing the pain down, but not all the way to at least a 1). Nurse C is going to talk to Dr. C and find out if there is something stronger that can be Rx'd for the really bad days. I'm praying she will approve something. Even if I never use it, it will bring peace of mind knowing that I have it. Especially on the weekends when the office is closed.

May 7th ~ NOT a good day at all....considered ER trip.

It took until 1pm for K to successfully get me into the shower and ready for church. I forced myself to go since I haven't been to church in two weeks. Then we stopped at Fred Meyers and I bought a queen sized electric blanket. It's much warmer than my lap electric blanket. It can also wrap it completely around me and cover every joint in my body. Believe it or not, it actually works better than I figured it would. Of course, now I've got the hot flashes coming one after another. I also am a little that what's working *isn't* getting me OFF the #$(#*$^@&* couch. *sigh* Hoping tomorrow is a better day.

May 6th ~ Slept a lot today....

I'm soooooo tired of being tired and sore. I slept until 2pm today. *sigh* I did wake up in time to watch Kentucky Derby. It was exciting. I didn't want to go to dinner last night (to celebrate our DTC day), but K has been looking forward to it, so I sucked it up and went. I'm so glad I did. We had a grand time and ate a lot (SE AK King Salmon...YUM!). Anyway, my wrists and fingers hurt. So I'll update more later. DH is also whimpering for he laptop. We really need to get another laptop.

May 5th ~ Called in sick 1/2 day....

I spent this morning wrapped in an electric blanket and doped up on pain meds b/c I hurt so bad. Last night I missed church (I begged Keith let me go back home before we even got to church). I'm in so much pain, I'm . I just don't know what to do anymore

May 4th ~ Called the Rheumy's office...again.

I called the Rheumatologist.....still no openings until July. *sigh* I have a call into my PCP to speak to the nurse about meds. I'm having a lot of break through pain this week and want to know if I can double my Ultram on those days. It's almost tempting to ask if I can use the rest of the Fentanyl patches until July, but I'm not sure I want the nausea that goes with it.

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I'm getting a lot done today, but my head hurts (well my whole body hurts) and I feel . Not even Zofran is touching it. I did eat a burrito for lunch and that is helping my tummy. According Lorelei and Rory, that's good hang over food. Not that I have a hangover mind you. *sigh* PCP's office closes in 6 min and the nurse hasn't called back yet. Either she's waiting until after hours or I have to wait until next week. I'd call and whimper and whine, but I don't want to be a pest.

May 3rd

Geez, I hurt today. There is a low pressure front moving in. *sigh* I predict rain (though we could get a dusting of snow too). I had my LAST bio-feedback therapy session today. THANK GOD!! I really didn't care for this therapist. She talks waaaay too much and assumes things. She rarely gives me time to speak. She also doesn't bother to check if I know something and I feel that some of our time has been wasted b/c she thinks I need to be taught when I already knew. Oh well, I made it through this and now I don't have to go back EVER!! Keith had to drag my out of bed this morning. I was hurting and I was tired and I had to get up earlier than normal. I hate mornings.

May 2nd ~ I feel human again!

Human!! I finally feel human!!! But when my ears finally popped OMG! I can actually hear again!

May 1st

My ears have finally started to pop. The pressure is easeing up. I stayed home this morning, but I am at work this after noon. I swear I haven't slept this much since my hyster.

Apr 30th ~ Getting better!

Anti-biotics are a wonderful thing!! I am starting to feel more human today!! The throat and cough issues are now gone. Just waiting for the sinus pressure to dissappear and my left ear to stop hurting, but we have improvement

Apr 29th ~ More antibiotics...

Went to the clinic and got more antibiotics. Geez, this infection won't clear up. The dr. said my eardrums are pulled way back from all the congestion/fluid build up. She Rx'd a Z-pack, Cough Syrup w/Hydrocodone, and Muscinex. I think I'm set for the weekend. I hate being sick. All I want to do is sleep........

Apr 28th ~ Ugh!

My throat is hot and scratchy, my ears hurt, my nose is running like a faucet and the sinus pressure is making me misrable and my eyes water. Can I just say I WANT MY MOMMY!!! So much for the #@*&$^% tonsillectomy 18mo ago. I've provided the "wine" today, anyone got the cheese?

Apr 27th ~ Ultram is great!

Well, I'm at work today. Still groggy, throat is less scratchy and sore, and my fever is gone. Boy, I'd rather be home in bed. Anyway, got lots to catch up on. This really wasn't a good week to be sick. I think we found a winner in the Ultram. I haven't had any Combunox in over 48 hours. I wasn't all that sore this morning. Still takes it just to a level 2, but the Ibuprofen takes it almost to a zero. I can live with this until July.

Apr 26th ~ Strep???!!!!

Something that the blonde learned today.........even after a tonsillectomy you CAN get Strep Throat. Yep! I have Strep. I got a shot in my butt for my reward as well. I've slept my way through another day. I guess now we know why I was so tired on Sunday--my body was fighting an infection. Glad I didn't expose Matthew to it. They made K come in a get tested b/c the PA was worried that he might be an asymptomatic carrier. He chuckled and asked if that was their way of saying he was "typhoid mary". Needless to say, he's not the source of my infections. The Ultram is WONDER DRUG!! I have not had any Combunox today. I woke up sore this morning and Ultram kicked in pretty fast. It's kept the joint pain down below a level 2. Woohoo. Not sure how much is from the fever and how much is from the joint issues. Either way, the Motrin has been helping for both. I'll give it a few more days before I call the dr. office just in case the current dosage dosen't last.

Apr 25th ~ My throat hurts....

I slept all day. I woke up with a sore throat and a fever. Ugh! I got my Ultram today. Fingers crossed this works.

April 24, 2006 ~ Bloodwork normal....pain not.

I'm still waiting for a call back from Dr. Chester's nurse about whether to give up on the Celebrex or not. I'm hoping they have my Thyroid Panel results as well. I've been doing research on the internet and have decided that it's time to stop. My findings are that I could have Fibromyalgia, Hypothyroidism, or Lupus Arthritis..... So, guess I just need to suck it up and wait until July when I can see the Rheumatologist. I need to figure out how I'm going to make it that long................... /c:

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My Thyroid Panel came back as normal as normal can be. That thoery is shot down. They are switching me from Celebrex to Ultram ER to see if that we'll provide better relief until I can get to the Rheumatologist in July. I guess this process won't be any easier that the process to get rid of Endo was.

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The pharmacy didn't have the new medication in stock, so I have survive through tomorrow. *sigh* I WANT TO STOP HURTING!!! I told a friend today that at this point I don't care what the *name* of my condition is anymore, I just want a treatment plan that will get rid of or control the frickin' pain. I don't want to hurt anymore. I would like the better parts of my day to be when I'm with my husband and not while I'm at work. I want to start mucking out the nursery instead of stuck on the couch because I hurt too much to do anything. I can't even lift my 7lb dog without hurting. Can't even carry groceries anymore without suffering for it. Shoot, it hurts to even hold a pencil to do a Suduko anymore. I feel like all I every do is talk about how much I hurt. I want to talk about all the things I'm doing because I feel great. I want to be able to cook for my husband, clean my house, got out with friends, make plans with my nephews, etc. I just want to be able to enjoy my existance. Grrrrrr!!!!

April 23rd ~ Celebrex just isn't working...

Day 5 of Celebrex. No real change. Yesterday I had to bail on a formal dinner Keith had to attend b/c I was in so much pain I was nauseated. Today I had to skip church b/c I was so tired, I couldn't keep my eyes open. K is babysitting DNephew by himself today (apparently he's also been informed that he can't put the train set together as well as Auntie Rhonda) while I'm at home sleeping and frustrated. *sigh* I'm calling Dr. C's office tomorrow and see if there isn't something she can do to get me into the Rheumatologist's office sooner. July is just too far away.

April 19th - One of my better days/Dr. Appt w/Dr. C

Wednesday, April 19th - Got to work at 8:45am (slow down on the hwy). Pain Level ~ Highest level = 4 Where? Hip and leg joints

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Update about Dr. C visit: Well three steps forward, two step back is still one step at a time right? Dr. Cwas very compassionate and understanding. She's referred me to the new Rheumatologist in town. She lightly pressue a couple of joints and was surprised that I said it hurt. She said that she'd say Arthritis or Fibromyalgia, but since that's not her speciality she really can't say for sure. She also indicated that while she could do the bloodwork, she rather let the Rheumatologist do what she needs instead. I can live with that. HOWEVER, the earliest appointment I could get with Dr. T is JULY 12th!! Grrrrr...sometimes living here sucks. Anyway, in the meantime, Dr. Chester has Rx'd Celebrex to see if that will get a handle on the joint pain. At least it won't be a rollercoast of pain/no pain all day. Dr. C is humoring me about my theory of Hypothyroidism. She ordered a full Thyroid Panel. She said joints alone, she say no, but with a few other symptoms I discribed, she's willing to take a look. At least if it's not, we can rule it out. If it is, then we can fix it (withOUT narcotics). We talked about finding what's wrong will make finding a better treatment plan easier--not easy, just easier than without. Dr. C said even if Dr. T comes back with a Dx that we don't like at least we'll have a course of action to take that will hopefully bring relief. I told her that I could accept this being a life-long condition, but I couldn't live with my current level of pain and the restrictions on my life that it's doing. I told her that this time of the year I'm getting better not worse when it's just weather related. That leads me to believe that something really isn't right and Combunox/Ibuprofen was not the temporary bandaid that we were hoping it would be. Dr. C did acknowledge that if the Pain Specialist isn't helping anymore, than she sees no reason to continue seeing him. Whew!! She really wants me to see Dr. Tan even if the Celebrex works. I promised her I would (hell, I don't want to live on Celebrex either, but right now it's the lesser of the evils). I feel wonderful to be validated by her listening, understanding and willingness to find answers. Some days you wonder if it's just in your head (as you all well know) so it's great when you are treated with such care and compassion. K went along. His question was if all my medications could be part of the problem. Dr. Chester said she'd be inclined to say no, but it really could be an option to rule out if the Rheumatologist deems it neccessary. She really wouldn't want to pull me off the hormones, at least, unless there was a clear need to do so and I don't want to either. So now we just wait and see if the Celebrex helps and wait to see Dr. T in July

April 17th & 18th

Monday, April 17th - Got to work at 10:30am. Worked until 7:30pm. Ran to USPS to mail tax forms for work. Went home ate, went to bed. Pain Level ~ Consistant 7 Where? All joints, big and little. Headache at the end of the day. Meds Taken: Ibuprofen Combunox Cymbalta Vivelle Dot Prometrium Lunesta Pain Relieved? No Slept? yes, woke up once

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April 17th Update Out of desparation, I made an appt with Dr. C to beg her to run every test under the sun to see if we can figure out what's the deal with my body. We are in mid-April. I should not be hurting this bad. I should be getting better. Something's just not right. I want to stop hurting!!! I don't want to deal with this anymore!!! I'm sick of it!!!!

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Tuesday, April 18th - Got to work at 8:15am. Worked until 5:00pm. Went to dinner with friends and swung by Wal*Mart. Pain Level ~ Highest level reached = 3 Meds Taken: Ibuprofen Combunox Cymbalta Premrin Vivelle Dot Prometrium Pain Relieved: Yes. Ibuprofen pain level = 2 Combunox pain level = 0 Slept? Awake every two hours. Moved to couch at 4:00am

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April 18th Update Hopefully today is better. I'm hurting, but meds seems to be helping and I was able to get to work at my regular time. Today shows promise. Another Update: Dr. C's office called today and offered me a cancelled appt for tomorrow!! WOOHOO!! Looks like I'll get to figure things out a little sooner than I expected. Makes my day even better.

The Spoon Theory...

I started this blog to journal my daily life with chronic joint and muscle pain (after 20 yrs of Endometriosis pain and 3 yrs for damaged nerve pain). While I do write about in my Life Blog, I've decided that I need something that I chronicle the "ups and downs" so they are easier to track and share with my medical providers. At this point, no one is really sure what is causing my pain. Fibromyalgia? Thyroid? Auto-Immune? Wheat/Gluten Allergy? We are still trying to figure it out. In the meantime, I have to learn to live a full-life with it. I need to help those around to understand it (as best they can). I have to take medications I wish I didn't. Why did I title this blog "Counting Spoons"? Why am I living from spoon to spoon? It comes from a web site that I found a couple of years ago created by someone who is living with Lupus called But You Don't Look Sick. On this web site she wrote about a conversation with a close friend about what it is like to live with a chronic illness--thus The Spoon Theory was born. If you plan to follow my journal, I beg you to PLEASE read this article. It will give you insight into what it is like to live with chronic pain as well--to understand why some days I just can't get my rear off the couch to do something as simple as pick up around the house. Why some days I just don't want to go out or get dressed. Why some days I just need a hug. Why some days I make a conscious decision to do or not do something in anticipation of "what may come". Living with a chronic illness forces you to live day by day. You do not know what the day holds until you live it. You might wake up just fine one morning and jump in and do the things you've been missing out on. You might not suffer any consequences of this or you might suffer the next day or two. Sadly, no one can predict it--even at the start of the day. You learn to put up with people who assume things b/c they don't understand the invisible pain. Those are the people who think you should "suck it up" and "deal with it". I wish it were so easy to do that. It's not. It's unknown if these ppl will *ever* understand. Because others can't see nor measure what you go through, you are forced to learn to become a good communicator. You are the only one who can describe what you feel and paint a picture for others to see and understand what is going on. Even so your dr.'s can judge what treatment might work best or how to adjust current treatments. You are forced to learn to believe in yourself, b/c some days it's hard for others to believe in you. Unless you deal with a chronic illness, there really is no way for you to truly understand what it is like. Unless you've dealt with a traumatic event, it's hard to comprehend. So somedays, even those who love you dearly, will find it hard to believe in you. At some point, you, your family, and your friends have to come to the realization that not everything as a known cause OR an easy solution. While you come to terms with the fact that you might have to learn how to live with your invisible illness FOREVER. You can let it get you down OR you can learn to co-exist with it while living the best life you can. This blog will be about just that--learning to co-exist with a painfully invisible illness that has not rhyme or reason and has yet to offer a solution.

Describing the Subjective Experience of Pain in More Concrete Terms

Mankoski Pain Scale 0 ~ Pain Free No medication needed. 1 ~ Very minor annoyance - occasional minor twinges. No medication needed. 2 ~ Minor annoyance - occasional strong twinges. No medication needed. 3 ~ Annoying enough to be distracting. Mild painkillers are effective. (Aspirin, Ibuprofen) 4 ~ Can be ignored if you are really involved in your work, but still distracting. Mild painkillers relieve pain for 3-4 hours. 5 ~ Can't be ignored for more than 30 minutes. Mild painkillers reduce pain for 3-4 hours. 6 ~ Can't be ignored for any length of time, but you can still go to work and participate in social activities. Stronger painkillers (Codeine, Vicodin) reduce pain for 3-4 hours. 7 ~ Makes it difficult to concentrate, interferes with sleep. You can still function with effort. Stronger painkillers are only partially effective. Strongest painkillers relieve pain (Oxycontin, Morphine) 8 ~ Physical activity severely limited. You can read and converse with effort. Nausea and dizziness set in as factors of pain. Stronger painkillers are minimally effective. Strongest painkillers reduce pain for 3-4 hours. 9 ~ Unable to speak. Crying out or moaning uncontrollably - near delirium. Strongest painkillers are only partially effective. 10 ~ Unconscious. Pain makes you pass out. Strongest painkillers are only partially effective.