My energy levels are dropping again and my pain is increasing. This past week hasn't been great. I don't know if I should chill or go for it and exercise. I have done some exercises in bed that someone, sometime over the years told me about. I felt worse the next day and I even did the minimal reps. The only positive thing I can report is that my mood is stable. I'm not letting this get me down. I'm tired of being depressed when things start going this way, so I'm going to stay ahead of this mentally and keep positive.

In regards to my SSD review/reconsideration/appeal fight:

NOTHING has happened. My check did come through, but they botched my Medicare part. God forbid something serious happen right now. Even so, I have to make a billion calls to get it straightened out. All it comes down to is Medicare letting MediGold know I'm reinstated. It looks like I'm going to be the one to do the leg work. Medicare is going to send me some proof of reinstatement and MediGold says I should bring it in to their office. Why does all the shit always fall on the person who feels like shit? Why can't people do their jobs correctly the first time? Also, if you say you are going to follow up or call back, THEN DO IT!

Vegas Baby

Pulling myself back up after a trip to Las Vegas with my sister. She had to attend a nursing conference and invited me along. We had a GREAT time! It's been over a week and today is the first day I actually feel back to my 'normal' self. Well, the highlight of the trip was that Barry Manilow was the headliner at our hotel!!

No, I'm just kidding. He was the headliner, BUT the big news was...

Last time I was in Vegas I won $1,000 on the $.25 slots. Well, this time things went a bit different. At our hotel they had a Thursday night "Wheel of Winners" contest where they drew 5 names and you would get to spin the wheel. The most exciting part was the minute your name was drawn you knew you won at least $1,000 because that was the lowest amount on the wheel ($5,000 was the highest). To be enrolled in the drawing you earned tickets by playing every day in the casino and just being part of the hotel's casino playing program which was free. By the time the drawing came around, I had 6 tickets and my sister had 4 or 5 tickets. So, we were feeling hopeful, but realistic.

Well, we were loitering around when it was time for the drawing (7:30pm). I was feeling like shit and just wanted to go back to our room and crash. (Pathetically enough I was even wearing a PJ top under my sweatshirt and a ball cap. I was not making any fashion statements that night.) So, the announcer starts and the first name he says is, "Kristin --with a long pause where my sister and I just stared at each other in disbelief because Kristin is not that common of a name and he must be trying to figure out how to pronounce my last name -- Renz!" I thought I was going to pass out. My sister was screaming and yelling, "She's right here!" (You only have 30 seconds to present yourself with your ticket.) I made it up through the crowd, cane and all. I was totally overwhelmed and I just focused on my sister back in the crowd. Everyone else was a blur and I can't even recall what the announcer guy said. Anyhow, I spun the wheel the best I could because it was actually quite heavy. I hit $2,000!!! (The other 4 folks that night only hit the $1,000!)

CAN YOU BELIEVE IT? I still can't, but it really did happen just like that. Guess what I did then, besides call back to Ohio and wake up everyone...

I went to our room and went to bed. I'm such the party animal.

Burning up the ol' credit card with lots of charges...

Not with FUN purchases by any means, but with vet bills. Lots and lots of vet bills. I have an unhealthy cat who keeps requiring repeat visits to the vet. She seems to be having some intestinal "issues". She's back on meds and it is pure hell to get her to take them. She honestly turns into a demonic cat who can contort her head and body in ways I've never seen. She only weighs 9lbs, but has the brute strength of a 200lb man on steroids. Which, ironically, she is now on steroids herself. One more pill added to her arsenal. SO, I actually have TWO cats on the 'roids right now. Think of all the 'roid rage I may be facing...

On top of her bills, I had to take my other two for their yearly check-ups. Found out my fat cat (15.5lbs) has the same skin issues as above unhealthy cat, Sadie. They are both on expensive ass, monthly treatments. I beg and beg the vet to realize I'm a broke, disabled lady. I can't pay for these visits. I have to CHARGE every single one of them. Thankfully, the new vet that bought the practice is more willing to work with me then the old bastard that used to be there. He was a true ass. No personality. No manners. Why did I go, you might ask? He was one smart bastard. I later found out that many of the pet owners and the staff felt very much the same about him. I also stayed because of the staff, who are awesome. I think had the new vet not taken over when she did I was about one visit away from switching. Glad I didn't. It was like a sixth sense. "Keep the pets here, things are going to change, it will get better."

Like my cousin said, "Vets. That's where all the money is." Well, they straight bill you and there are no insurance companies to deal with it, so it's pure profit. Well, I know that's not entirely true because there are overhead costs, employee salaries, and so on. However, I truly think a vet is better off then a regular doc. People will do anything to keep their little fur balls alive and the cost just doesn't seem to matter. Skies the limit for these folks around here. We are in a wealthy area, but I am by know means wealthy. We have a nice house and are comfortable, but the bills for the vet are my responsibility.

My cats, my responsibility.

(How could I have known 12 years ago I wouldn't be working and be dependant upon Social Security Disability to foot my monthly expenses??? You never know what life has in store for you, but I wouldn't trade these cats for anything.)

It's just outta control right now and I pray these meds do the trick and we don't have to go back to the vet for many, many months. My little ol' credit card is gonna melt if I have to use it one more time.

Btw, if you would like to contribute to the kitty vet bill fund, please feel free to contact me. I accept all major credit cards, cash, checks, & money orders. =)

Two days in a row was a little too much...

Went to the pool Wednesday and Thursday and it was way too much for me. I forgot, well I didn't, but I just wanted to "test the waters", so to speak. Anyway, I still need a days rest in between workouts.

I don't know what was going on yesterday at the pool, but all I kept hearing was how beautiful my eyes were. It was flattering, but then a bit embarrassing when one of the ladies shouts, "You really must look at her eyes, they are just so beautiful!" I guess this also gave some of the others the opening to approach me and start asking questions about why I was even there. (In case I haven't mentioned I switched Y's and I'm dealing with a whole new older crowd. I'm still the youngest at 34, but I think they think I'm in my 20's. No one has asked, but I'm sure that's coming any day now.)

I've been to this pool about a half a dozen times in the past 3 weeks and I'm really satisfied with the pool and the instructors. One is a little more laid back and focuses on stretching quite a bit. The other is a little spit fire, rumored to be in her 80's!, who really pushes the group. She tells them to zip their lips and get moving!!! It cracks me up, but I love her class!

Today I will not be attending classes but relaxing the muscles and joints. Besides, snow is starting to fall and it's supposed to get worse. I'll be staying put.

I'm finally OFF of the Topamax and feel mentally sound again. I know I was losing my mind with that drug and had I stayed on it things would have gotten much worse. Coming off of it wasn't so bad (Sunday night was my last pill), except the last 2 days I've been itching like crazy. Oh well, a little itching is better then feeling psychotic.

My sister started Jenny Craig and I started Points for the 4 millionth time. I lost 4 lbs the first week and that's even with a few off track days. This week I need to keep focused and pay attention EVERY SINGLE day.

I'm back in the pool as of 2 weeks ago. I've been about a half a dozen times. I'm at a new location and I really like the workouts. It is still Arthritis classes, but different teachers and they mix up the routines. I never know what to expect when I show up. It's helped me feel better, but damn it's a big deal to do the pool thing. Healthy folks just don't understand how much it takes to make a trip to the pool and of course, the after effects...exhaustion.

SSA is still pulling my chain. Most recently they seemed to have "misplaced" my paperwork during their move. Well, that's at least what one person said. I finally spoke with my case worker who assured me everything was on her desk and she was submitting it. What I still don't get was that I did all this back on January 23 and was under so much pressure to get everything in within this 10 day window, BUT SSA is just sitting back and taking their sweet old time. All I know is my payments better not stop while I'm fighting this review denial. I will be pissed off. So, now I wait for my chance to fight again, unless by some great miracle they just go ahead and decide to reinstate my benefits with the information I've submitted. That would be some great day IF that happened.

Going To The Lab

My lab visit was crazy/hectic yesteday. I have been going to the same lab since 2001 and I have my favorite phlebotomist, Della. She can almost always get me on one stick, in the hand. I have small, spindly veins that go into hiding when a needle punctures my skin. However, over the years, we've figured out you have to rub and smack my hand a little to get the veins nice and juicy.

Anyway, I haven't seen Della for a while. I go every 12 weeks and I don't always get her, so we were excited to catch up. She drew my first 2 or 3 tubes (I wasn't paying much attention, could have been more or less) with no problem and then I was about to walk out. I remembered that "Urinalysis" was on the list. "Della, don't have to do a urine sample also?" She double checked, "Yep, sorry kiddo, I though it was crossed off." So, I headed off for my urine sample.

When I came out Della said, "Kristin, you won't believe us, but we need one more tube." I just laughed. So, I had to wait for the frightened kid in the chair to get his blood taken then I was back on the hot seat. I told her, "I guess I shouldn't distract you so much when you are entering my lab work information." She said, "Hey, it's been awhile and we had to catch up. At least, between the two of us, we got it all together!"

So, she went for the second stick and nothing. Damn, she rarely misses. She immediately called in back up. Good ol' Jackie came in and found in a few found a good one. One more tube done and I was finally released.

Walking down the never ending hallway I thought I was going to pass out. I poked my head in where my Mom works and she was very busy. I told her boss to tell her I had been there and I was too tired to stick around. By then I was sweaty and shaky. I had my cane, but felt unsteady on my feet. I headed to the elevators and out I went.

See you all in another 12 weeks...

Over the weekend it seemed that my psychological rollercoaster slowed down. I'm stunned that the change could happen so quickly. I've felt so mentally exhausted on top of my usual physical exhaustion. (Maybe my brain is just trying to reset itself.)

My back was killing me today, especially my shoulders. I took my Darvocet and Tizanidine which equals an instant knock out. I slept for quite awhile - I believe it was like 4 hours straight. It was okay with me because I felt as though I needed some serious down time to relax my mind and body after the past two week of flipping out all over the place. I still feel the need for quiet and feel reclusive.

Tomorrow I go for my 12 week lab check and that's about it for now.

I've been struggling with this new drug called Topamax. It's primarily marketed for migraines (which I have), but some Fibro patients have found relief with it because of it's nerve blocking capabilities. Well, I can get to 50mgs, but at 75mgs I start to, and I'm not kidding, lose my mind. I swear it exacerbates my depression and anxiety, plus it throws me into some crazy ass, scary mood swings. These past two weeks have been a nightmare. Why haven't I just dropped the drug all together? Well, I have been able to cut back on my Imitrex use and my biceps have felt better. It's helping, but at what cost...

So, I visited my PCP yesterday to discuss the situation. He said simply to back it down to 50mgs and enjoy what benefit I can get from that. I am on so many drugs that effect my brain that maybe this is just the one that just pushes me too far. If I can maintain 50mgs and get some benefit then leave it at that. If the psychological issues ramp up again we may need to back off on this drug again.

Why all the focus on this drug? Well, it's the only thing I've changed in my regimine lately. I started it back in November, but I didn't increase to 75mgs until Jan. 22 (the day I had an appt with my Rheumy). My Rheumy said you could go as high as 200mgs and why not bump it up. Well, next appointment I'll have to give her the bad news that I think this drug isn't going to be my save all and 50mgs is probably the highest I can go.

Now, I have to admit, I have been feeling more depressed since September with all this SSD review going on (who wouldn't). It's stressful and almost more then I can handle right now. So, when this whole drug increase came into play these past two weeks it's like I was falling off into the deep, dark end of nowhere land. I still don't feel good right now. I don't know how long it's going to take to get this extra dosage out of my system, but hopefully, I can resume some sort of normal status - my "normal" status - once things level out again.

I've also made the decision to get myself back into therapy and have my first visit on Valentine's day, of all days. I figured it isn't going to hurt to talk to someone, especially when I tend to keep things to myself. I have great support with my family and bf, but I just can't unload on them all the time. It has to get old at some point, wouldn't it?

The Mobile People at The Doctor's Office

I find myself looking at other people while they go about life so easily. I know outside appearances don't always give away what's going on in the inside, everyone has their story, but I'm focusing on their mobility. People move with such grace and ease. The fluidity of their movements with no second thoughts given. They move at fast paces, pull the doors open as if they are weightless, brush past me because nothing is holding them back, and get up out of chairs with such simple ease. Watching this, seeing this, in the real world, makes me want to stay home and be sheltered. I feel more disabled then ever.

"Ms. Renz?"

My pain screams at me when I get up out of my chair. My knees feel like they are ripping. My hips hurt, my thighs burn, my back is stiff and angry.

I envy and hate all of them at the same time.

Social Security Disability Review

A note to bring everyone back up to date: I had SSD for a little over 3 years, of which I had to go before a judge with a lawyer to get the benefits the first time around. Well, this past September they started a review of my file and here's the latest.

The review decision came in and while my "conditions are troublesome" I should be working 40 hours a week!!!

So, I'm back at war fighting for my disability rights. I had to go to court the first time around and I'm prepared to go for it again if necessary.

I have four stages for the appeal and the first one I'm going it without a lawyer. It's a Reconsideration where you can present new information and meet with a Disability Hearing Officer (someone who has supposedly never seen your case). You can also bring people to your meeting who are witness to your disease, such as friends or family. My Mother (who I live with) and my sister (an RN) are coming with me. I have my main Rheumy Doctor working on a detailed letter, since they only took her office visits notes during the review.

I've filled out the required paperwork, very detailed with every last piece of information I can think of, and I've turned in everything on time. Oh, a long time family friend wrote a great letter about her watching me grow up and going through everything, all the changes, from being healthy to being where I am now. It's the most amazing letter. Whether anyone bothers to read it or not, well, that's another question. So, now it's just sit back and wait.

(My expectations are non-existent - I'm sure this will go on and on. I'll probably need a lawyer AGAIN and go to the next level.)

New drugs and old school drugs!

I'm taking an old school sleeping med, the name fails me right now, but it has helped so far. Of course, it isn't covered by my insurance since it's not a huge money making "as seen on tv" drug. There aren't any butterflies landing on me if ya know what I mean...

My newest addition in the fight for pain control is Topamax. I've been on a low dose for a total of 2 nights with no evil side effects, which is a good sign. I haven't noticed any improvements in pain, but I have room to move with the dosage, so that might be the next step in a few days. As long as the room isn't spinning, my head is clear, and I can keep my feet on the floor then I'll keep trying the drug.

SSD Review Update:

Just a few days until the (unnecessary, IMO) SSD mental status examination. I received a reminder letter today that says I have to bring the letter and all my medications in the original bottles. Guess I better pull out a piece of luggage to haul all my loot!

Can I Keep My Sh*t Together For This Visit?

Another doctor, my Primary Care Physician, has requested I come in for a check-up. I haven't seen him in 2 years, but we talk all the time through e-mail. (My rheumy is the doc I see the most in person.) He, my PCP, is also the one who set me up as a guinea pig for the infamous "no risk" pain treatment. I have a lot of respect for this doctor and I don't blame him for what happened to me on Halloween night. I think he truly felt I would benefit and was as shocked as I was at my body's response. Anyway, that's all in the past now.

Moving on...

The Lyrica was a bomb. That drug made me feel terrible, like I had partied all night and had the hangover from hell. You know the one where you swear to God that you'll never ever drink again if he can just make the room stop spinning. And oh how people's voices just cut right through me. I just wanted everyone to shut the hell up. The vacuum about sent me crawling on the ceiling. Worse then nails on a chalkboard any day. This lasted about 48 hours and then it was like I went into a withdrawal after only 2 days of this evil drug. I felt like I had been hit by a Mack truck. My head hurt, I was feverish, had chills, and oh so dizzy. I was thrilled when that stopped and I was left with what I have now.

I've had a sore throat for a few days, I'm more tired then my usual tired, I have cold sweats, and I can't sleep. This is bad, but nowhere near the hell caused by the Lyrica. Evil, evil drug. Oh yeah, did I mention that it didn't even touch my pain!?! What a waste.

So, to the doc I go tomorrow to see what brilliant things he has to say. Remember, this is the dude who diagnosed my Myositis within a matter days! AMAZING MAN. People go for years and run around to many docs to finally get a diagnosis. My Mr. McSmarty-Pants pulled it off in less then a week. Oh yeah, he's that good.

Frustrated & Tired

For the first time, in a very long time, I lost it in the doctor's office. I bawled my eyes out trying to explain how I've been feeling. All this emotion, that I keep inside, just came spilling out. I even cried after I left the office because I'm just so tired and frustrated with being sick. It just plain sucks and I feel like no one truly understands what it's like to be in my body (except those I've found on the fibro and myo bb's). I should probably talk more about how I feel with those around me, but that's just not my style. I have a hard time verbalizing what I'm feeling. I can write it, sometimes, but I can't always say it out loud.

Anyway, I'm trying a new (to me) pain med called Lyrica and stopping the muscle relaxers. I've tried the relaxers long enough and can honestly say they don't do enough to justify taking them. I'll give this new med a try and I'm increasing my Darvocet intake. I'm going to try and keep the level of Darvocet in my system consistent, even if it makes me tired, to try and get through this pain flair. I guess now it's just about patience and time...the freaking story of my life.

I'm not sure if I've posted this before, but here it is, possibly for an encore:

THINGS MYOSITIS PATIENTS WOULD LIKE TO TELL AN UNINFORMED DOCTOR ABOUT MYOSITIS:

SYMPTOMS:
. There is pain with myositis.
. All patients are different and can have different symptoms with the same disease.
. Typical physical weakness results in a) difficulty swallowing, b) trouble getting up from chairs, c) falling, d) climbing stairs, and e) getting out of bed.
. Dermatomyositis patients have skin involvement and sensitivity to the sun.
. Patients perspire when others around them do not.
. Many myositis patients suffer from extreme fatigue. This occurs even without any exertion.
. There are many different degrees of illness with myositis from mild to extremely severe.

DIAGNOSIS:
. Myositis patients might have a negative muscle biopsy, even when two are taken at the same time in different sites.
. The CK level is not always positive in myositis patients.
. Never accuse a patient of being a hypochondriac just because you can't find a diagnosis.
. Older patients can have myositis and all aches, pains, and bouts of clumsiness are not caused by getting old.
. The aldolase might be a better indicator of inflammation than the CK level.
. Myositis patients with elevated CK levels probably will have elevated CKMB levels also. This does not always mean cardiac involvement. Order additional testing such as a troponin to be sure.
. Myositis patients frequently have other autoimmune diseases. Their varying symptoms are real.
. Patient may have strength; but no endurance, e.g. may be able to lift heavy objects but can only hold it for a few seconds.

TREATMENT:
. Patients react differently to medicines used in treating myositis. The same medicine might put one patient into remission and send another patient to intensive care.
. Tapering of prednisone needs to be keyed to the individual patient.
. Myositis patients look normal; but still can be very ill.
. Pain and flares are not always directly correlated with the CK level.
. Myositis is a chronic disease. You might get the patient into remission; but you are not going to cure them. While not curable, myositis is very treatable.
. Treatment should be based on how the patient feels, not solely on blood test results.
. It sometimes takes a long time to get the right combination and dosage of medicine to be effective.

LIVING WITH MYOSITIS:
. Myositis sufferers frequently cannot return to work and are truly disabled.
. Myositis affects the entire family unit. Prepare the patient for this.
. Include the spouse when possible in treatment plans, etc.
. Myositis patients need a handicap parking sticker.
. Myositis is a lonely disease and patients need a support group. These are usually on the internet because the disease is rare and there may not be other myositis patients in the same area.
. Myositis patients are frequently frustrated and perhaps clinically depressed.
. Myositis patients are extremely friendly, helpful, understanding, and loving to others who share their diseases.
. Family and friends will not understand why you are unable to participate in family event due to pain and weakness.
. Life with myositis will necessitate changes is lifestyle. Myositis patients may never mountains climb again.

PERSONAL PHYSICIAN SUPPORT:
. Treat the patient, not the disease.
. Life threatening complications can kill. Annoying symptoms can hurt. Myositis patients suffer from both. Doctors should treat all.
. Be open to all options of treatment. It does matter that you care and search for an answer.
. The physician should be up to date on all medicines being prescribed.
Listen to patients when they feel they are having adverse reactions to medications.
. Give the patient some indication that you give a DAMN.

I was in bed early last night when my Dad said my doctor was on the phone. My PCP had been out last week and was following up regarding my ER visit. I think he felt bad that he was the one who suggested the study and promised no risk at the time. Well, leave it to me to have the unusual and uncommon response. He said the machine tech had gone so far as to speak to a Neuro doc regarding my reaction. Apparently, what happened hasn't happened to anyone else AND they have even used this machine to help people with migraines! I honestly think the combination of my Myo and Fibro just set me up for problems. So, my PCP and I agreed I'm done with this experiment.

Halloween Night or, as I would like to call it, The Night I Thought My Head Was Going To Explode!

About 5:10 or 5:15pm, minutes after I finished the previous post and 4 hours after my pain treatment, my head started pounding. It came on fast and hard -- a migraine for sure. I took an Imitrex and rested in the dark. About 5:45, I was in the kitchen talking to my Mom when I started to feel really nauseous. I moved to the couch and laid down. I lasted a few minutes there, but my head was pounding so hard that I just wanted two things: dark and quiet. I went back in my room. My headache was getting worse, so I took my second Imitrex.

My sister brought my nieces over after trick or treating - I have no idea what time it was, but it couldn't have been later then 7 or so. I walked out in the hallway to see their costumes and then went right back in my bedroom. At this point, I was in my own private hell. I had kept myself calm up to this point and tried not to cry, but I had reached my limit. I headed out into our Great Room, bawling my eyes out, and plopped down on the couch. I announced that I couldn't take it anymore and would someone please take me to the hospital. There was a little commotion and debate about who was taking me. (Mom ended up driving me, Dad showed up right after, and my sister took the girls home -- way to spoil Halloween!) I sat on the couch and Mariah brought me my fuzzy slippers. They both kept saying, "It's going to be okay." I went to my room to get a sweatshirt and sat on my bed. Jada put her hand on my shoulder and said, "T, you will be okay. We love you."

On the road...

We hit every freaking red light. The drive was a nightmare. I was just holding my head, snot dripping out of my nose (nice image), and clenching my jaw so hard my teeth probably would have cracked if I hadn't put in my bite guard. We finally made it to the hospital and thankfully the ER was pretty quiet.

To sum the ER visit up...

After taking my history, they gave me fluids and a migraine cocktail which consisted of an anti-histamine, a pain killer, and something for naseua. I had this same treatment 8 years ago with a migraine that was just as bad. They wanted to get a CT scan, just to be sure nothing was going on because this wasn't my typical migraine. It was on a different side and was far more intense then usual. A spinal tap was mentioned, but my Mom and I discussed skipping that. I've had that done and it's not fun, plus I was pretty certain I didn't have Meningitis since the drugs started working very quickly. The CT scan sucked (spinal was never brought up again). I couldn't hold still because my muscles were restless and then I had to take all my earrings out. It took a little time but they finally got a good picture. I went back to my little ER room and by then the drugs were totally working and I was ready to skip out of there. My muscles were so jumpy though that I couldn't sit still on the bed. I was up and down like some little hyperactive kid. What was worse was that I was tethered to that damn IV. I so wanted to be one of those people who could just say to hell with it, pull out the IV, and storm out AMA (Against Medical Advice). Of course, I didn't. I suffered the restlessness and made a few trips to the bathroom just so I could move about. FINALLY, CT came back normal and I was released.

Once I was home I took a hot shower and tried to go to bed. My muscles were wrecked and it took me a long time to get calmed down. I finally passed out in the early morning hours.

So, did the experimental pain treatment bring on the migraine? Everyone seems to think so, from the ER doctors to my family, including me. Apparently, the deep muscle stimulation went a little too far and irritated the hell out of me. Will I participate in the treatment again? Nope, not a chance in hell.

I've felt so tired and beat up since this happened. I haven't been able to sleep at night, even with my sleeping pills, and I'm exhausted. I did very little this week/weekend and when I did I was really pushing myself. I'm sure I bored the hell out of my bf -- so sorry Rob. It was like I was glued to my mattress at times. My back and neck hurt a lot more then usual. Maybe those little suction cups were actually sucking the life out of me??? LOL - that would just be my luck.