One not too good day, please. Oh, and with extra AAACK!

I think I must have woken up today and decided that this was going to be an even worse day than yesterday. If I weren't in the midst of a personal mental/emotional crisis, I would elaborate.

I will spill all (or mostly) later just to make myself feel better. I think I'll just start my next post with Why?

Maybe your imagination can make my reality seem minor, although I doubt it.

I hope your day, your week and your Thanksgiving are much happier than mine was, is or will be.

Oh the week from . . . it rhymes with bell

I can thank RA and Sjorgren's syndrome for some awful tooth decay. Dry mouth is not a minor problem, for sure. Over the weekend a rotten tooth turned nasty on me. I have been putting up with a couple of fairly useless teeth to avoid the cost of having them extracted. I guess that wasn't a good idea. Now I have endure this toothache and wait until Thursday to have it yanked. Of course I can't be off from work that long, so I trudge on.

I didn't really think I had allergies, but I seem to develop a sinus infection around this time of year, and you guessed it, now is the time. At least one round of cephalexin can take care of both the infection and the tooth extraction, but I feel lousy. Or, well, I guess lousier.

My son called me at work this morning and let me know he'd had an accident out of town. We had heavy rain all day today and I don't drive well in rain and I don't see well in rain. I went round and round, asked directions 3 times and finally made what should have been a 30 minute trip in about 3 hours (maybe a little less). He had spun out on an exit ramp and took out a light pole. His car will have to be towed and may not be worth fixing. I guess we'll hope for the best.

One very bright spot is getting back in touch with one of my two neices that I have not seen in several years. She seems to have grown to be a remarkable woman with a beautiful family. It has brought back a lot of good memories for me. I hope it has for her. I did lots of things with them when they were small and I'm glad that I did. My brother died when they were very young and I wanted to keep them a part of our family too. Almost everything I did with my own children, I did with them. I hope they both know that I think about them often and I am so happy that they are doing well.

Life is busy for us all, but with the advent of Facebook, it is easy to keep in touch and share everyday things. The everyday things are really more important than the events in life. There are many more of them and they truly shape who we are.

Life is certainly a challenge daily. We go up, and then down. We soar and then we crash. We live and then, we die. I'm doing my best to focus on the soaring part, but darn it is hard. If I can't get all the crashes off my schedule soon, I may just be too tired for soaring.

I'm turning on the heated matress pad tonight and cuddling up with a good book. I doubt I'll get very far, but I need just one little pleasure to end the day.

It's My Beeswax

I saw my rheumatologist yesterday. My appointment was scheduled for 10:30 a.m. After seeing the doc (11:30) and having my labs done I made it home at 3:30, a whole hour before my quitting time at work.

Today I had several people comment on the fact that I was out for the entire day. I'm sure they don't realize that my rheumatologist appointments are not the same as the usual doctor appointment. For one, my rheumatologist is 45 minutes away. Not because I chose to see someone out-of-town. There are no rheumatologists in my small town. For another, a rheumatologist appointment always includes lab tests which entails another wait at the lab. My appointment often also include xrays, joint injections and DEXA scans.

If my appointment had been in the afternoon, I could have taken a half day from work, but then I'd have to also take time the next day, to go to the lab. I'd have another 1 1/2 hours of driving and that would mean another half day from work. So, no difference in sick leave used. I usually try to scheudule my appointments at a convenient time, but I'll get a letter in the mail a month or so later, letting me know that my appointment has been rescheduled. So, I am at the mercy of the appointment lady. I take what I can get, because I desperately need to see my rheumatologist.

I am definitely not a malingerer or misusing sick leave. I have worked with broken ribs, with splints on my thumbs & wrists, drug side effects, and with daily pain that would have those whiners at home crying out for Jesus.

I am pissed that I feel I have to defend my use of sick time, or to explain it at all. It is my business.

As it turns out, I'm still working on yesterday's appointment. The doctor goofed on a couple of my prescriptions and so now I'm caught between the pharmacy and the busy doctor's office to get it all straightened out. Of course that is time consuming, head-warping and not too much fun too.

On a good note, the changes in my prescriptions and some other recommendations he made should have me feeling better by the weekend.

I guess I'll be posting again soon about the wonders/evils of prednisone.

The problem with prednisone

I have been on prednisone, at various dosages, since 2006. I've increased the dosage in a burst and taper with every flare I've ever had. Prednisone is the drug that works when nothing else will and it works very fast.

The effectiveness of prednisone is a wonderful thing, but it comes at a terrible price. It causes, among other things, osteoporosis, thinning skin and a risk of overwhelming infection. I've been diagnosed with severe osteoporosis. I've developed cellulitis after a minor cut and I have skin so thin on my forearms that the blood vessels break with barely a brush. So, I've been making a big effort to taper my dosage back to 5mg.

I've gotten down to 6mg and seem to be stuck there. I've felt every decrease, to be sure. Even when I went from 7.5mg to 7mg, I was stiffer and hurtier. It was worse, of course, when I dropped to 6 and when I dropped to 5, I went into a moderate flare of stiffness, pain, swollen, red joints, fatigue and the depression that comes with it.

Since I was definitely flaring, I decided to change my dose to an alternating 6mg and 5mg. I have gradually gotten worse, or maybe my narcotics aren't working as well as they were. I've done this for two weeks and have just decided to go back to 6mg for at least a month to see if I will adjust. I suppose if things get worse, I'll be calling my rheumatologist and will likely be put on a much higher dose than what I tapered from. Square -10.

I knew I was in for discomfort, but I did not think I'd have this much trouble. I'm hoping for better results when I try again. If I can't get down to 5mg, I'm afraid I'll have to add another DMARD or change to a biologic. I don't want to do either one.

If you've had RA for very long, I know you've been through this and can sympathize. If you've just been diagnosed, please keep my post in mind when you place that prednisone on your tongue. It is a quick fix for what ails us, but we just have to pay for it later. I'm not sure it is worth it.

Blog Retitle

After quite a few very positive posts, I'm back to whining. My ittle bitty blog may have to be retitled the BooHoo Blog.

I've been tapering prednisone and have only dropped 1.5mg over the last 3 weeks or so, but that is enough to send me back to the deep dark pit that is Rheumatoid Arthritis. Everything, everywhere hurts, my eyes are so dry I can't see well, I'm taking pain killers around the clock and I'm back to feeling blue and hopeless. If I had tears I'd cry 'round the clock too.

The hard drive in my Mac at work went bad, real bad and I lost all my files. I dread re-creating everything. It is a long story. Basically, I bought my own DVD's for four years and backed up my files, but then my optical drive went bad, I couldn't get an external drive or convince anyone that I needed backup of any sort. I gave up. I should have kept spending my own money, just for peace of mind, but money is one of many things that I just don't have enough of. And, to top it off, my admnistrators decided to replace my wonderful Mac with a regular old computer. I'm going to put on my so-fake smile and just keep plugging anyway. I don't have any choice. There just aren't any jobs around.

My daughter is having some medical issues and I'm worried to death.

I lost two fillings since my last cleaning in April. I always seem to lose fillings after a cleaning. What is up with that?

The love of my life is busy taking care of his aging parents and we barely have time to talk and he's so exhausted that he doesn't want to.

There isn't one positive thing going on in my life.

So, there you have it. A synopsis of the last few weeks. I hope that everything will do another 180 and I can be something other than depressed.

I've removed myself from all of my social contact. I just don't want to infect anyone with my negative thinking. So, I've probably pissed quite a few people off.

Right now, everything is just not good.

Becoming myself

It has been a month since I posted anything, but I've been very busy. I've been busy being the me I haven't been for four long years. Thanks to a wonderful rheumatologist and the right combo of medications, I'm back to doing many of the things that make me really feel alive.

My daughter, who has been away since January, visited for a week and she was so good to go with me on a pretty strenuous 4-mile hike. It felt so good to do something so physical. I took my camera and indulged in another of my former hobbies. We had hoped to see wild turkeys or white-tailed deer, but we were not disappointed in what we did see. The trail we took went past a pond, thru dry stream beds, by lightning struck trees, a natural grapevine swing (yes we tried it out) and an old rock wall. There were flowers and butterflies everywhere, benches made from rocks stacked against trees and strange green flies. We smelled cedar, sassafrass and honeysuckle. We wore ourselves out and it was way more than wonderful. I don't remember enjoying a hike more.

I still have my problems, but I'm getting MY life back. I'm mowing my own grass and thinking about my next hike. But, I'm not going to spend too much time thinking. I've had lots of time for that. On with living!

Furry/feathered babies, stop trying to make me sad!

Little furry and feathered babies are out to make me sad. It all started several weeks ago with a little homeless opposum, who showed up on my doorstep. So strange. He looked absolutely lost and confused, and very skinny. I brought out some cold cuts and watched as he ate his meal with his little fingers. He hissed at the mailman and hung around my front door for quite a while before he moved on. We saw him again later that night in the middle of our dark street, with the same expression of confusion. Condominium construction down the road likely evicted him from his comfy home. Poor guy. I just know that he didn't make it. He was the perfect target for a dog, a car, or just starvation.

My sweetheart ran over a nest of baby rabbits with the lawn mower, and shredded one. He won't tell me, and I won't look to see if the others are still living.

My daughter's big, goofy lab mix, Delilah, caught and played with (shook to pieces) a small squirrel. I got her away from it, but it only got as far as halfway through the fence when it expired.

We had some major rainstorms last weekend. Actually, all weekend. The hard rain and wind knocked down a nest of baby birds from one of my big pines. They were just starting to get their feathers. Three of the four were already dead, but one was still holding open his red mouth on his pencil neck, waiting for his mama to bring him some grub. I didn't see the actual nest anywhere around, or I would have put it in the tree and placed pencil neck in it. But, there was nothing I could do to help the little one.

All these mortal little babies have made me sad, but that sadness is buried beneath such a joy at feeling well that it hasn't had the impact on my mood and mental health that it would have a few months ago.

I'm not going to let the sorry state of my finances, the mess this country is in, the evil I hear on the news every day or anything else keep me from smiling. I'm asking, very sincerely, for all helpless and hopeless furry or feathered things to find someone else to give last rites and to worry over you. I'm going to be happy.

Feeling stronger every day

It has been a very long time since I could actually say I felt strong, but I’m feeling that way now. I’ve been thinking lots about the things I haven’t been able to do and how this summer may be spent working on getting back into living my life, actively.

Since my diagnosis, I’ve been through lots of medication changes, complications, pain and I’ve had to give up so many things that made life interesting and fun. I can’t say for sure what has really made the difference now. Although my elbow still bothers me, and will until I have the revision surgery in July 2011, my RA pain has been more intermittent. I’ve also bought myself some really comfortable Clark's shoes that have helped my feet immensely. I’m ready to plan some hiking and camping trips. I’m ready to pull out my mandolin, guitar, fiddle and banjo, restring them all and set to work to get back to jamming and maybe even gigging again.

I always feel that I might jinx myself by actually saying outloud, that I feel good. It seems that the minute things get better, I’ll have a flare of disease activity and get pretty depressed. But, I haven’t felt this good in 4 years. The only medications I’m taking are 400 mg Etodolac 2x day, 7.5 mg prednisone and 200 mg plaquenil. That list is so much shorter than it has been for a while. It makes me wonder if that has anything to do with it. It did seem that the more medications that were added, the worse I felt. When I stopped the methotrexate, piroxicam and prilosec, I started to feel better right away. Of course, that is also about the time that I fell and broke my elbow.

I hope that I won’t have to add any new medications. I hope that I can enjoy feeling “normal” again for a while. I won’t count on forever. I’ll hope for the summer at the very least. With RA, you just never know.

I feel good!

I have energy! I don't know where it is coming from, but I sure am enjoying it! After work and a dentist's appointment yesterday, I mowed the grass and made pizza (not frozen). Typically, mowing the grass OR making pizza would do me in, but not yesterday. I have more energy than I've had in years!

Mowing grass wasn't nice to my recently broken elbow and it hurt quite a bit last night, but I should expect that. Tylenol #3 helped me get a good night's sleep and I feel full of energy again this morning.

Fatigue has always been a big problem for me since my RA first started. I've put so many things off because I didn't feel like doing them, that my house is a disaster. I hope that my renewed energy will help me to get control of things once again. I'm going to have a busy, productive weekend and pray that my fatigue doesn't ever come back.

Is this the way 49-year-old women, who don't have RA feel? Lucky snots, and lucky me, for however long it lasts! Gotta bounce!

Is my RA on vacation?

I don't want to jinx myself, but I'm having very little problems with my RA. I'm hoping this is a lasting thing. I'm thinking it is the result of the new NSAID, Etodolac. It seems I am stiff and painful until about an hour after I take it in the morning, and it wears off about 3 in the afternoon. Then I have minor pain until about an hour after the evening dose. I can live with that!

I am hopeful that it is the Etodolac giving me this RA reprieve and that a change in dosage or in the time I take it will eliminate even more of my pain and stiffness. I know my 7.5 mg of prednisone helps a lot too. I'll be seeing my rheumatologist early in June, so we'll see if there is some tweaking that can be done.

I've been trying to wean myself off narcotics and tramadol and am having lots of trouble with that. I have IBS-D, and the constipating effect of the narcotics has really helped me. When I don't take them I have those troubles tripled it seems. I guess I'll just have to give it a shot over the weekend and hope it isn't too bad.

I've learned to enjoy these periods when my disease is relatively quiet, but I've also learned that I can't count on them lasting. It can be so depressing when you are hit with a horrible flare when you've been feeling really well. I would like to think that I could gain control of my RA, but I'm going to try real hard to be realistic.

I'm feeling pretty good! Prissy, almost! I'm going to go enjoy it now. Take care!

Another year older and deeper in . . .

There aren't really a lot of reasons I can think of to celebrate the passage of time. Considering that we are here on this earth for a finite number of years, it hardly makes sense to celebrate when one passes. But, that is the way we do things.

This week my family will celebrate 3 birthdays. Mine is today. I am one year from the big 5-0 today. It is so hard to believe that so much of my life is past now. My youth has definitely abandoned me.

I finally got my permanent punctal plugs on Saturday! Ahhhh! So much money, but also sooo much relief for the teeny things they are.

I'm on my third week back to work after my elbow adventure. I'm doing okay. My elbow bothers me quite a bit, but it is getting better. After sitting at a desk everyday for the past couple of weeks, it seems very odd that my feet have been bothering me the most. I guess the old RA is just telling me it didn't go anywhere. It is still here with me and I should just get used to it.

I am celebrating my blessings, and not my birthday this year. I have a wonderfully imperfect, quirky family that I adore; the sweetest man on the face of the earth calls me his princess; the cutest and smartest little boy on earth calls me Nana; I have a job that I actually enjoy much of the time; I have good friends that understand I need my space; I have hobbies that I can get lost in; I have pets that entertain me and enrich my life far more than I could ask . . . I could go on and on.

When I count the many blessings the years have bestowed (not a word I ordinarily use), I can be happy with my 49 years. I do have some celebrating to do after all.

Happy Birthday to Me!!! And, THANK YOU to everybody and everything that brings joy to my life, everyday.

Mixed feelings

Tomorrow is the last day of my sick leave for my broken elbow. I'm going to really miss reading books, watching TV and really relaxing. But, I do miss work, and the people I work with. I know my first week back will be hard, but fun. I love what I do and I'm pretty good at it. I'll probably be exhausted and whiney, but glad to be back to my routine. I'm going to make good use of tomorrow and try to leave the mental preparation for my return to work for Sunday evening.

The elbow is still healing. I still sleep with it on a pillow. It is very sensitive and very stiff. I'm still doing most everything with my left hand. My cellulitis is clearing up, but I still have 17 more days of antibiotics. I'm still waiting for my punctal plugs to come in and I'm going through a lot of eye drops.

The RA has taken a backseat to all the other problems lately. I've had so much rest and so many painkillers, I've hardly noticed it at all really. Next week might be a different story.

Best Laid Plans

Well today did not go at all as I had planned.

I started out the day with a visit to my eye doctor and was very excited to be getting my permanent punctal plugs. But, he was out of my size plugs and will have to reschedule the appointment when they come in.

The visit with my GP for a recheck of my cellulitis did not go well either. He said the week I have left on my antibiotics will not resolve the infection. He wrote another script for 15 more days, and I have to go back to see him in two weeks. If it isn't completely cleared, I'll get another shot of rocephin.

I did complete the work I picked up from the office at least. It is good to test out my elbow a little bit. It didn't really bother me too much. It got a little stiff from staying in the same position, but no real pain. I guess I'll be ready to go back to work in a week.

I really wanted to resolve the dry eyes and the cellulitis before I went back to work. I've used quite enough sick time already.

On the bright side, it is supposed to be 80 degrees here on Thursday and Friday. What a lovely way to start April. I did enjoy the snow days, but I am so glad to see spring arrive. The daffodils and hyacinths at my front door are so cheerful, I can't help but be sunny too.

The joy of doing nothing.

I am out of my cast and trying hard to get my range-of-motion back in my arm. I can reach my face with a fork or a toothbrush, but it still hurts. I'm also dealing with cellulitis on my thigh from a razor nick. The weirdest stuff happens to me it seems. At least a couple of rocephin shots and 15 days of antibiotics should cure it. I'm now on day 8.

Tomorrow will be a busy day. I'll have my permanent punctal plugs inserted, see my GP for another recheck of my cellulitis and pick up some work from the office. When that is done, I plan to get back to my newest hobby, relaxing.

Relaxing is something everyone should strive to become really good at. I never really knew how to relax until my broken right elbow. It is a lesson I am really happy to learn. It has done me so much good.

My former definition of relaxing was "doing something sitting down." Now I know that relaxing is doing absolutely nothing. You just let your body go entirely limp and breathe deeply. I think it is really more restful and satisfying than sleep. It is kind of hard to get the hang of, but once you do, you'll do it every chance you get.

That's all I really have to share today. I'll be back at work in a week, and I won't have the chance to do nothing for much longer, so I'd better get to it.

FrankenElbow

I saw my orthopedic surgeon today to have my staples removed. A student doctor removed them a little hesitantly and a couple just didn't want to come out. The doc said my incision looked beautiful. I'll let you be the judge. I guess when I'm brave enough to clean off all the dried blood it won't be quite so bad. There is still a lot of swelling and bruising, but I guess the incision itself does look pretty good.

He started wrapping my arm with a roll of white fuzzy stuff and I asked what he was doing to me. I was mostly just suprised that he didn't clean my arm before he wrapped it. He told me he was going to put me in a new clean splint and then he said, "Wait a minute. I don't do this for most people, because most people don't listen to me. But, I think you'll listen to me." He left the room and came back with an elastic tube, slid it on my arm and told me to keep my sling on all the time, even in bed and to try to keep it in that position as much as possible. He said that would allow some movement, but not much. I'm not to use my arm until I see him next. I'll have to go back in three weeks to start therapy, or as he said, to "start moving this thing."

I love the fact that I can take the tube off to shower and I can get my arm in tops that I couldn't get that log of a cast in (goodbye baggy t-shirts, hello warm sweaters!), but there are definitely some trade-offs. The cast offered protection and support that I don't have now. My elbow hurts going over bumps in the car, with very slight movement and when it is touched. I'm going to have to be especially careful with my grandson, my dogs and door frames (yes, I'm clumsy). I tried moving my arm both up and down and it just won't do it. That is a very strange feeling. I'm sure it will get better over the next three weeks, but therapy is going to HURT!

I had a good look at my incision in the mirror when I got home and had my son take the photos above. I'm not sure why, maybe just the cast, but my wrist and hand are really bruised and swollen. I should have had him photograph it next to my left hand to show the difference. The lightest color in the image is my usual winter skin color.

I'm hoping it will be a looooong time before I fall again and I'm going to do my best to stay as far away from the hospital as I can. I'm not looking forward to therapy or to the bills that are headed my way.

I did learn today that the bone I fractured is called the olecranon (O-Leck-Ra-Non).

Isn't life just a little too interesting sometimes?

Sasquatch No More

I've learned to do lots of things left-handed in the nine days since my surgery, but I couldn't quite get the hang of shaving without major blood-letting. I couldn't even reach my left armpit. A very close friend helped me shave and get back to feeling smooth and silky and much more feminine today. I'm loving the smell of apricot-scented Boothe's lotion too. I wish I could fit my cast through the sleeve of my favorite PJ's - then I'd be truly comfortable (as I can get).

I'm still having quite a bit of pain, and my hand and fingers are swollen and discolored from the tightness of the cast. It is also maddeningly itchy.

But I'm enjoying the small things when I can, like today's transformation from sasquatch to silky female.

Oh, My Not Funny Bone

On Friday the snow and ice were melting and making nice puddles on my patio and mud in my yard. I went out on the patio to feed my two big dogs when my chihuahua, Ernie (no, not one of the big dogs) decided he would chase the neighbor's dobermans up and down the fence, in the mud. I started out after him, to keep him from being a muddy mess or doberman chow. What I thought were mere liquid puddles turned out to be puddle-covered ICE. In not more than two steps, I came down very hard on my right elbow. It would be very hard to describe that pain, but if you are an empath like me, your elbow hurts just thinking about it.

I spent the weekend in the hospital because the break required surgery to repair. I now have two pins, a spring and 16 staples. I'm in a hand-to-armpit hard-cast that is open in the incision area. I'll have to have another surgery in 18 months to remove the wacky spring.

Since I am right-handed, this injury has made so many things impossible or very difficult. I cannot apply makeup or write at all. Brushing my teeth is very difficult. Typing an average-sized blog post takes FOREVER!

I probably won't post much, if at all, until this "so funny" bone heals in six weeks. I'm not really sure how I'll entertain myself.

Be very careful my friends. This is not fun! I have learned a lesson about how unreliable my judgement is sometimes, and I am SO ready for spring!

Hooray for snow!

I have to admit that although I'm a little tired of the cold, I'm loving the snow. I was off from work yesterday and today. Actually, my office opened at 1:00 p.m. today, but I had approved sick leave for the afternoon for an appointment with the eye doctor. Four full days from work, counting the weekend!

Because I take plaquenil and it can effect your vision, I have to have exams every six months. One exam is the usual eye exam and the other is for the vision field test and color blindess test. I have also had major problems with dry eyes due to secondary sjorgrens syndrome. I've tried Restasis over the last six months and it didn't help me, so I'm trying out punctal plugs. He said the Restasis helps you to make more tears, and since that didn't help, we would try to keep the ones that I make by using the plugs.

Today I had two lower absorbable punctal plugs inserted. They should last about a month. I'll go back in two months, and if they helped, I'll have lower permanent plugs placed. I can have the upper two plugged later if I want to. I can tell a difference already. There is a slight irritation from having it done, but it should be gone in a day. I'm happy because my vision is not blurry and my eyes feel fairly moist.

I'm also liking the etodolac, even though I thought I wouldn't. All in all, I'm not feeling too bad right now. That could be due to having a nice four day weekend, I suppose. I'm just going to have to see how it goes for the next 3 1/2 months

I'm not even going to try to explain to anyone how arthritis can effect your eyes or your internal organs. No one quite gets it until they've got it themselves. A little over four years ago, I didn't know anything about rheumatoid arthritis. That ignorance was definitely bliss. I just didn't know it at the time.

Maybe someday, I'll return to my former ignorance. Every little bliss I can win back from RA is a cherished blessing. Thank you God and Doctor "S" for my blissful blessing. I am a very grateful girl.

What's the point here?

I'm back from a rather disappointing appointment with my rheumatologist. I am not starting a new DMARD like I'd hoped. My weight is still not what he wants it to be. He is afraid that the gastrointestinal side effects that go along with the medication would cause even more weight loss which I cannot afford.

Now, my medication list looks like this: Etodolac (NEW), Prednisone (7.5 mg), Plaquenil, Restasis, Voltaren gel and Tylenol III (NEW).

I got so upset I was near tears when I asked if I could ever hope to be free from pain and he said in my case, no. I have too much osteoarthritis which is secondary to the RA and he can only give me pain medication and NSAIDs for that.

We discussed my thumb joint replacement and he wants me to see a hand specialist instead of the orthopedic surgeon I saw in December. I'm happy about that. I'd rather trust the resulting usefulness of my thumb to someone who only does hands.

So, again I am waiting, four months this time. I'm on a higher dose of pred, which will only worsen my osteoporosis. I have no DMARD but plaquenil to control the RA. The RA is worsening the osteoarthritis, which will lead to more pain and more joint replacements.

I'm not too happy, or too comfortable. I'm too agitated to sleep if my parts would even let me. I wish I'd rushed to the pharmacy before they closed. Maybe the codeine would have been a little help.

I really doubt that I'll ever gain enough weight to satisfy him. My pre-RA weight was 98lbs. and since RA, I've had a lot of trouble staying above 90. I'm almost to the point of just relying on pain treatment alone. It doesn't seem like my disease treatment is going anywhere at all. I don't know how long I can tread this kind of water, or how much more patience I can find to keep up the waiting. I. just. feel. about done.

Waiting for Wednesday

When you have rheumatoid arthritis you spend a lot of time waiting. It seems you are always waiting to see if the latest DMARD (Disease Modifying Antirheumatic Drug) is going to work to control the disease. You wait in numerous doctors offices and labs. Most of all, you just wait to have your life back. RA CAN take your life.

I guess I haven't given up all hope in having my pre-RA life back. I still have hopes that I'll run more 10K races, play more bluegrass music, hike for miles, mow my own grass, wear rings and bracelets and cute shoes, ride half-crazy horses, restore old violins, sleep through the night and spring out of bed the next day . . . you know I could go on and on.

I pin hopes on every appointment with my rheumatologist. I have a lot of faith in him, but the visits are so short that I often come away wondering what I can expect from the changes he makes in my medication. RA waxes and wanes on its own, for me, even without treatment. So, it is awfully hard to tell if anything really makes a difference or not. I'm wanting the difference that cannot be mistaken. I want to feel like I did before I knew what RA was.

Right now my hopes are on Wednesday, my next rheumatologist appointment. I have hopes that this appointment will bring all the things I've been missing back to me. If it does, I promise not to take any of those things for granted. I know that remission usually doesn't last forever and you have to start the whole process over again when your treatment stops working. I'll take whatever I can get.

I haven't been feeling too bad today. I'm still fighting the sinus infection and I've had to rely on pain medication to manage, but I don't feel like chopping off any body parts. I'm living the usual life with rheumatoid arthritis, I'm waiting, for Wednesday.

Frigid Friday . . . just waiting for the snow.

I don't know where the snow is. Those with the satellites and doppler now say the heavy snow will begin after 9 PM and continue through the day tomorrow. I'm hoping that my joints will feel at least a little better when it finally gets here or I'm in for a crappy weekend.

I was looking forward to visiting the library and the mega sale at Kroger. (I lead a really exciting life, huh?) If I can manage that and the laundry, I'll be happy.

On a very positive note, I got a short email from my daughter. I am very happy that she knew I needed to hear from her and that she is okay. It won't stop my worrying. I guess that is a chronic condition, like RA.

Weather Guru's-1, Rheumatoided-0

I'm not sure how I misinterpreted my symptoms in regards to the weather, but I did. The weather is definitely changing, but now those gurus are saying the snow won't get here until tomorrow afternoon. I liked my plan for TWO nice snuggly snow days. With the guru plan we have a weekend trapped indoors and NO snuggly snow days.

I do know that my symptoms are affected by the weather. Here is my interpretation of the type of pain and the connected weather condition:

Deep ache = wet weather or high humidity
Outward pressure-like pain (like my joints may explode) = storm (or maybe just a strong barometric change)
Burning pain = not exactly sure yet

All day yesterday, I had the deep ache I associate with wet weather, so I figured that it would snow, and very soon. Today I have that outward pressure pain, so I know the weather is changing (gurus say so too). I hate this kind of pain the most because it seems that nothing really relieves it.

I guess I should leave the predictions to those with doppler radar and satellite imaging. I wish they could tell me in advance how my RA might behave so that I could plan my activities and avoid canceling/changing plans. But RA does not follow the rules, mine or the gurus.

I guess the best I can do is to predict that I'll be sleeping in my wrist splints with the heated mattress pad on at least four. I may even wake up (if I go to sleep) and have to decide if I should take more drugs or just lie there and cuss.

RA pain of any variety = lots of dirty words.

Wednesday Night Fever

No, I'm not disco dancing with these swollen feetsies. I'm puzzled because I am running a fever again. I've been taking the antibiotic right on schedule, so I'm not sure why. It might just be RA playin' with me again. It's not quite 101, so I guess it's probably nothing to worry over.

A storm is brewing, and my body knows it. The great weather gurus are expecting 2-5" of snow to start tomorrow night. My elbows and wrists would like all those gurus to know that it will get here a little sooner. I stopped at the grocery tonight for bread and the shelves were nearly bare. I had to buy Wonder Whole Grain White. I think my elbows and wrists must be talking to a few other folks.

We'll see in the morning if elbows, wrists and bread shelves know more than weather gurus. I'm counting on TWO nice snuggly snow days with my books and my Ernie.

Mr. Tuesday, I'm pleased to meet you

Today was a fairly good day. I know, you're probably thinking that someone else has taken over this blog. With all the negative posts lately, a positive statement is quite a shock.

The ride into work this morning was pretty hairy. We had a system move through that dumped a good 3 inches of snow in less than 30 minutes right before rush hour. I think there was an accident on every block, and sirens screaming from every direction. It was pretty slippery, and our usual 7 minute trip turned into 25. It did make for an interesting start to the day. Just a little excitement to wake me fully and have me actually happy to arrive at the office.

With the help of a few doses of tramadol, I was able to concentrate on the projects on my desk and actually enjoy my work. I was also able to get back to eating normally, which is going to be very important next week. I ate lots of fruit and cheese and made a good pot of chili for dinner. I think the snow put me in the mood.

On Sunday, when I went to my GP, I only weighed 91 lbs. in heavy clothing. I'm not sure if I will weigh enough to start Arava when I see my rheumatologist on the 3rd. He wanted me back up to 98 lbs., which means I need to gain a pound a day, and I'm not a good gainer. I may have to carry some rocks in my pockets to make up the difference.

Since I stopped the methotrexate back in August, my RA is not at all controlled. I've had to take way too much prednisone and tramadol. I'm ready for a shot at something different. It would be great if I could achieve a remission, even a short one. It would be so wonderful to wake up, put my feet on the floor and not want to cry or go more than a day without having to take pain meds. It is hard to believe that I was diagnosed with RA more than 3 years ago and it is still not controlled.

With RA treatment, you can't be in a hurry. The medicines take so long to work and this is the second time that my weight has delayed starting a DMARD. It's try this, wait 3 months, increase the dose, wait 3 months, increase the dose, wait three months, try a new med, wait three months and before you know it, 3 years have gone by and you've not seen a difference. This disease will teach you real patience.

Good days happen every now and then, like today. They might suprise you, like they do me. Don't waste them when they do come. Make sure you acknowledge them and are thankful. Tomorrow may not offer the same pleasures. Enjoy even the smallest things, like a surprise snow storm or good pot of chili.

It's Monday, but that's okay.

I'm feeling much better today. A Z-pack, steroid nose spray, decongestant and a lot of rest made all the difference in the world. I am definitely on the mend. I'm not feeling quite as overwhelmed as I have been the past few days either.

When I left for work this morning, it was fairly warm, and rainy. By noon, the rain had it had turned to a styrofoam snow. Later this afternoon it was sunny, but windy and very cold. My RA has kinda reflected the weather, by changing all day long. This morning my fat shoes fit loosely and I wasn't too stiff, but by mid-afternoon my feet and hands were starting to swell. I'm also covered in bruises (thank you high-dose aspirin). At least now, I not only feel like I've been run over by a truck, I look like it too. That's okay. Just like the weather, it will change again very soon, I'm sure.

The thing that hurts the most can't be modified by DMARDs or prednisone. My heart still aches for my baby girl. I miss her so much, and still worry. I hope she is smiling and happy. If you are the praying kind, I hope you'll say a little prayer that she finds her way. And, I pray that you've found yours.

Sunday morning

I think I may have to take action on the sore throat after all. I'm running a fever and can barely swallow. And, although when I'm hurting so much emotionally that dying sounds like the easiest thing, I'm not that selfish. Although my daughter is gone, there are others who depend on me.

After losing my spleen in 2007, as a complication of RA, I have to be especially careful about infections. I can develop septicemia within hours. The spleen performs many functions in the body, one of which is defense against encapsulated bacteria. Strep is one of those bacteria. I carry a wide-spectrum antibiotic with me at all times to cover me until I see a doctor and I've been very fortunate that I have not had a major problem so far.

I know I'll live, although living seems the hardest thing to do.

I hope my baby girl is happy and well on this Sunday morning. I miss her.

Coping . . . barely

I've eaten and slept, which is a good thing. I don't have the gnawing gut, from lack of food or the untreatable headache, from lack of sleep. But, now I have an awful sore throat, which is not good for someone lacking a spleen. I should have expected that with the stresses and all of the past week, and an increase in the good ol' immune suppressing prednisone, that I'd get sick. I don't plan to go to the doctor, so I hope it isn't strep or another encapsulated bacteria which could be deadly.

I am praying constantly that my daughter is not being mistreated. I want my baby to find happiness and success. I know she doesn't want my help. Maybe this adventure is what she needs to prove to herself that she can manage on her own.

I plan to let nature take it's course, for now, with the sore throat and with my daughter. I'm just too emotionally and physically drained to take more action with either problem right now. And, since I always seem to do the wrong thing, maybe the right thing is to do nothing at all.

Dealing With Major Stresses

This may seem completely off the topic of living with RA, but it is not. RA complicates things in a way that makes the more difficult things in life nearly impossible to bear.

My daughter decided to leave school and live 7 hours away from home with a guy she barely knows. Of course, I wanted to rescue her. I wanted to let her know that she was making a huge mistake and that I wanted her home, NOW. But she has made it very clear that she will not be coming home.

I have decided that SHE made the decision to sever ties with me and that SHE will have to live with her decision. I'm hoping that this sort of tough love will make her grow up and stop living in a fantasy world. I'm going to go on with my life and let her live hers, with all the rights and responsibilities of adulthood.

I tried to rescue her, as I always have, but she did not want to be rescued. It hurts more than anything has ever hurt me before. If she decides tomorrow, or next week, or a year from now that it was a mistake, she'll have to find a way to fix it.

I think I'll clean up her room and pack away all her things. Since she doesn't want them mailed to her, maybe some needy Haitian would like them. If she decides to come back and she needs a place to stay, I hope she hasn't cut all ties with her friends as well. She can visit, but she does not live here anymore. SHE made that quite clear.

I'm flaring like crazy, but I didn't notice until I could hardly get my fat shoes off. I haven't eaten or slept in three days. I'll either live through it or I won't. At the moment I'm too used up to care.

I would like to know what I did that was so horrible that she was desperate to escape, but I won't dwell on it. With RA, losing is a way of life and I've grown quite accustomed to it. If I live through this, I can live through anything.

A Brand New Year

Christmas is finally over. I did get the tree up (with a lot of help) and down again (with not as much help). I managed to gift everyone. I didn't get them as much as I would have liked, but they were not forgotten. I am in the poor house for sure, but hopefully I'll get caught up on the bills.

A week before Christmas I had to make a call to my Rheumatologist due to a flare. So, no holiday from RA for me. He upped my prednisone and put me on the cancellation list. I'm doing better, but I know I'll have to start a new DMARD when I see him next. I'm not crazy about a whole new set of side-effects.

With the increased prednisone, the broken blood vessels, pictured in a previous post, are going away. Interesting.

I saw my Ortho doc about my thumb too. I'm going to need a joint replacement. I wasn't quite ready to hear that. He prescribed Voltaren Gel to get me through until I decide to have it done. The gel does work, so my thumb, elbows and knees are feeling much better. I've rubbed the stuff everywhere. I guess it is better than using narcotics, if I don't have to.

I'm glad that it is 2010. With the closing of the old year, I feel like I am starting fresh. Like I have a clean slate and that I can somehow make this year a good one, or at least a mite better than 2009, or 2008, or 2007. I don't have any resolutions, really. I just want to make better decisions and deal with problems better than I ever have. And, I plan to ask for help when I need it.

I've been cleaning up a little. I've posted auctions on ebay to clear out a lot of clutter and make a few needed bucks. I'm even parting with my horse gear and some of my violins. If you remember my post a while back, I was vascillating about giving up those hobbies or being determined that I'd be able to do those things again. I guess I've lost hope. At least a little. It is sort of freeing and sort of depressing at the same time. I have a few good days, here and there. But, mostly my days are not good.

I'm closing the door on some important parts of my life. Now I'll need to find some new ones to open, and just move on. 2010 is bound to have some surprises. I hope they are good ones.