Attempting to knit and crochet for charity!

I know, who do I think I am? Attempting to do a hand intensive charity gift such as knit and crocheted items. Well they are needed. It is going to be a cold winter here in the northwest! And its a way of keeping my hands moving and not being stiff. However, the key is to do a little at a time and stop before things start to hurt.

I learned from being a respiratory therapist that when I have to bag a person for any length of time to keep the elbows in to reduce fatigue (otherwise you look like a bat!). This is true for knitting and crocheting. I keep my elbows in or rest them on a pillow to help with pain and fatigue. I will post pics of my attempts at making hats and scarves for those chilly heads and cheeks out there.

You are welcome to post any links with charities that need knitters and crocheters with donations.

Merry Christmas!

My favorite blog is RA Warrior. Kelly Young is an amazing woman and has the courage through all of the tiredness that one has with not only having RA but a mother and wife to have a terrific blog that supports many, many people lost out there with RA. She is an angel.

She asked a question today about how did your RA start for you? RA for the Rheumatologists follows that RA is mostly about the hands and wrists. But, is it really? There is no research out there for potentially other ways of looking at how RA starts and possibly helping the General Practitioner or DO to set RA patients in the right direction (instead of floundering around for years). Here is what I wrote in my little answer block provided...


"I think it started at my feet, but its hard to say. I remember getting cramps in my toes and having them curl up. When I had my first kiddo, I had to have cortosone shots in my right wrist from overuse. Then my shoulder started hurting, my hip would lock up if I was reading on the couch and tried to stand up. I would be walking around like a limping cowboy! Then I needed shots in my heel and ankle (no one ever said arthritis, but the x-rays would say "arthritic changes.") Then cortosone shots in my shoulder.

I had my second baby and while I was preggers I would hide my hand under the pillow where it was warmest to ease the pain. And at the end of that pregnancy my pubis symphis would click (the joint in the center of the hips). When I had him I couldn't lean against the counter without horrible pain. Then at the end of my schooling two years later TMJ appeared with a vengenece, my jaw would get stiff and I would (still do) have to open it to crack it and make it feel better. My wrists started getting stiff and cracking. My knuckles would too. My knees, my ankles followed. My DO sent me to a nice but spacy rheumy who just didn't help at ALL. Frustration, then went on with my busy life!

My neck a year and a half ago would crack as I turned it and realized couldn't turn it all the way to the right anymore. I had a bad bought of asthma and got lots and lots of steroids and mentioned to my pulmonologist how much better my joints felt (I just noticed, did not realize how much they hurt!). He said that a lot of people feel that way after a lot of steriods, so I brushed it off.

Then last December every joint went to town. I thought I was crazy! My wrists hurt! My knuckles were red. I couldn't type for more than a few minutes. I couldn't put my elbows on the arm rests. I couldn't sit for more than a few minutes. I was a pain in the butt and my family thought I was nuts! My very caring DO sent me to a rheumy and he finally after more cortosone shots in the hand and a thorough check up he diagnosed me (seronegative). Vidication! (And not quite a year later after diagnosis) Whew!"

And the question is where does it start? Is it somewhere else? Because RA does not just affect the joints, it also affects the lungs, heart, eyes, cardiovascular system. I wonder if it also is a part of my GI, because I always had issues there? Or just having a kicked up immune system - see my asthma. RA is about an INCREASED immune system. An AutoImmune Disease that is not like HIV/AIDS which is about no/low immunity. Its about the body attacking itself, out of control body! Where and when does it start? Is it genetic? Is it spurned by a viral or bacterial infection? A surgery or injury to bone? So many questions.

In the end, we cannot be afraid to live our lives. We as people with any condition cannot be afraid to let go and try our best to do what we can with what we have. No matter what the ticking time bomb is. Fear is not an option. That is why I support RA Warriors around me. xxxooo

Remicade on different schedule.

Had another Remicade infusion 2 weeks sooner than originally scheduled. My Rheum said my test were "normal" although he has said that and things were elevated. Hmmm. Anyway, after night shift I went to the infusion center and got my Remicade. I was so tired that I could barely sleep when I got home at noon (a 8 am to noon infusion). I slept until 5pm. Not enough. Then worked Friday night. Its getting colder around here and my hands are swollen and hurt.Time to take some pain meds and get ready for work. Positive attitude! Positive attitude.

Weather is changing; it affects the joints!

As the weather has changed, and it gets colder or rainier, my joints have been more painful and stiffer. I was hoping that the Remicade would be kicking in. I have two weeks to wait until the next infusion. I had to start up the 5 mg of prednisone because my wrists felt like they were broken one night. Now, many of my joints despite the meds are hurting, my knuckles, my wrists, my shoulders, knees, ankles, toes. Yikes! Placed a call to my Dr's office and told the MA. Had to go in and have labs. Kinda pissed me off. Like I would be faking it? But that's OK. If my sed rate is high it only underlines the situation. But its a factor in RA. Just getting to the diagnosis of RA is an uphill battle. And the having to prove you're hurting. Not fun. I begin to doubt myself even! Well I hope that things are figured out tomorrow.

The wind has been very driven tonight! Saw some transformers blow over the ridge in town. The power went out in the grocery store as I was just finishing my transaction. Whew! I was about to get a lottery scratch ticket from the machine. Good thing I didn't! I would have lost a dollar to the windstorm!

Got my infusion EOB today. Ugly. Now I will turn it in to the Remistart program people for assistance. Thank God! they are able to help. I would be facing the bankruptcy path. Seriously. I'm a bit unhappy that its not working as well as I had hoped. We shall see. There are other biologics out there.

Been working on the Remicade infusions. They cost a pretty penny even with 90% covered. Yes, I'm lucky that I have insurance. But 10% of a pretty penny times as many infusions is still sucky. I'm waiting for them to work! Still in a lot of pain in most of my joints. My Rheumy says every 6 weeks instead of 8 weeks for me. Still. Waiting. On 5 mg of prednisone (actually back on) just to help with the achy-breaky fingers. I must say, still not as bad as some others...

I go in and have a slow infusion in my arm over a few hours plus a normal saline (NS) bag to clear the lot. I have to give myself Methotrexate injections every week so that my body does not reject the med. Remicade is the same as the last biologic I was on, Enbrel. But the Enbrel injection site reaction kept getting bigger and bigger despite my downing Benedryl every day (even while I was trying to stay awake at work, and I work nights!). However, recently, I have been fighting the eczema reaction on my face that I get every winter. Is it related to Remicade? It sure is a lot worse, a lot sooner. Who knows?

I have been hoping to start exercising now that I should be feeling better. The winter is coming and the rain and wind are staying around. Is this a part of my new disease. Hoping that winter does not kick my butt? Because, my joints are screaming. I'm afraid of the colder weather! I want to walk, but my hips ache afterwards. I just grin and bear it and hope to distract myself with other things. Remicade work!

How do I know I have Rheumatoid Arthritis?

For me getting to the answer of Rheumatoid Arthritis was spotty, then a fast rush to the answer. I have had intermittent joint problems and have had autoimmune disease. My first is asthma. My second is bouts of GI problems that I attribute to autoimmune disease of a unnamed origin. Lastly, I have eczema, and have had it since childhood. Newly, I have pernicious anemia and take B-12 shots for the REST of MY LIFE (that was a new diagnosis last summer). My IgE when I had my last bad sickness with asthma was over 1,000. Ugly.

I first started having joint problems with my shoulder, hip, knee, jaw and ankle and heel several years ago. I went to a Rheumatologist who came up with Ankylosing Spondilosis. I did not have back problems (and therefore had my doubts about the diagnosis), so when the Rheumy came up with a well intended capsasin cream that caused my body to be red all over and in extreme pain. I gave up with her. I'm sure she gave up with me.

A few years went by and nothing really bad or miserable happened. Suddenly this last December I started to have hand pain so extreme that I couldn't even use a computer for longer than 3 minutes, couldn't hold a book, limped for the knee pain, my shoulders ached and my hips, and wrists ached so bad I couldn't sleep, my General Practitioner sent me to a new Rheumatologist (in the same practice). He did blood work (which ended up being seronegative, high sed rate, high C-reactive protein), a good work up with x-rays, and said he would help me. I went on prednisone, Arava and pain meds and hoped it would all go away. The Arava gave me horrible gas and stomach upset (no surprise, due to my long term stomach issues). I got cortisone shots in my hand (he called it trigger finger) due to my wrist being swollen and compressing my nerves. After a while he tried to taper my prednisone and my arthritis came back just as hard. He started me on methotrexate in which I injected in my abdomen (I couldn't take it orally as the Arava upset my stomach).

Then, I asked for PT/OT, I wanted tips on how to protect my joints, keep working and do my activities of daily living. I was swimming in a aerobics class but the whisking of my wrists just irritated them more. So I stopped. The PT/OT Hand Specialist was clueless. She didn't see any horrible deformity so, she didn't know what to help me with. I told her I wanted tips on how to keep pain at bay when I performed my activities of daily living. The next appointment she had forgot to look up info to help me (on the Internet no less, I could have done this myself). That was my last appointment. Later, I was referred to another OT gal who was a godsend. Absolutely fantabulous. The best.

Then after hobbling along one extreme night at work, my wrist and ankle and knee doing a number, my Rheumy gave me multiple cortisone shots. He said he never gave anyone so many shots at one time. I was crying and trying to be brave on the exam table while he gave them. I took that night off of work. Some co-workers suggest that I get on FMLA like, NOW. So, clueless, goofy me started the paperwork. Protect the job! Sigh.

Then the Rheumy started me on Enbrel Sure-Click. A biologic. And another round of shots! Yea! Oh, that one hurt and I had to psych myself up for that one. Ugg. I was going along with things OK for awhile until my other hand started to have symptoms and elbows and hips. It started to become uncomfortable to sleep again. Then the Enbrel started to give me itchy site reactions worse each time, each week on each rotated-pin cushioned - bruised thigh. When the itchy red welt got as big as my hand (I have big hands) on my right thigh, I called the office again. They had me come in. Gee, this is ugly I said, aren't I supposed to get better, not worse by now? My rheumy assured me he had never NOT figured out a patient in all his years. That I was welcome to get a second opinion. That he was going to start me on another kind of biologic. Remicade. The insurance wanted to see that I failed 2 meds in the same class before starting on another. Remicade is infused, thru an IV in the outpatient hospital. For, like, REALLY A LOT of money. Hi-ya, gasp, gag and all that good stuff. I was to stop my Enbrel (which was due that day) and I could burst on prednisone 20-20-10-10- back to the 5 mg I was on. I told him I hated that stuff. I couldn't think at work on it. He ordered it anyway if I changed my mind.

Well, I have had my scary infusion (I'll tell you why on another blog). And now I pop my regular Ultram to keep the horrible flare at bay. Everything is hurting like a mother. And I'm waiting for the new biologic to start working. I could take the prednisone, but how will I know when the biologic works? I keep moving my hands. But boy it hurts. Much like broken bones healing hurts. Or if you have bruises over the joints. I wait. I hope. I distract myself. I try not to whine. I wait. I hope. I distract myself...

Temporary Ring Splints

Hello. I've started an interesting journey with Rheumatoid Arthritis. I was officially diagnosed in December of '09 (not that long ago). Let me tell you, its been the classic mourning senario: http://https//health.google.com/health/ref/Grief . Right now I'm doing my darnest to be accepting of the fact that this is my new life.

Today, let us say, early this morning after noc shift, I saw my hand therapist. I told her the little story of Walmart. It goes like this: I was pushing a shopping cart with my husband in tow, when WHAM! my left index finger and its buddy finger cramped up and bent the opposite direction that its supposed to. Kinda like a bow (as in bow and arrow) shape, bending up. My husband had to separate my fingers and put them in a more natural position (uh, not what it was doing). Two and a half interesting things happened there. One, it scared the pants off me because my fingers have never done that before (half my left hand has been relatively unscathed (RA is a bilateral disease)). Secondly, it was a visual kick in the pants to my husband 'cause I don't think he really got the RA thing until then. He then took the cart from me and we walked into the store. I proceeded to go to the sunscreen isle holding onto a can of sunblock with my left hand to keep my fingers from going freakazoidal on me again.

My hand therapist looked at my hands and told me I had started swan neck deformity (arrggghhh! deformity) and she would recommend ring splints to me. She showed me some plastic ones that reminded me of small versions of 6-pack plastic rings but with only 2 rings that attatch to each other like this http://www.amazon.com/Oval-8-Splint-Point-Products-Individual/dp/B000ITJT6O/ref=sr_1_5?ie=UTF8&s=hpc&qid=1278720394&sr=1-5 and a spiral metal type splint like this http://www.braceamerica.com/murphy-ring-finger-splint-p-203.html which I guess is a Murphy ring splint and a more "jewelry" like splint http://rheumatic.org/ring.htm . The plastic ones were under $20 a piece the metal ones were more like $70 - 90 per each. Of course, insurance doesn't pay for such things... So, being the nice hand therapist that she is, she plastic molded some temporary splints for a couple of my fingers to see how I liked them. Let me say, I'm for anything that keeps deformity at bay. And she ordered the plastic six-pack versions for me. She measured my circumfrence of my fingers bottom, joint and top and voila! I will have another splint to add to my list!

Let me underline a thought I have been having, that after doing some research on the net, I am one lucky girl. "WTF?!?" you say? "You have RA, how is that lucky?" Well, I have found that 15 - 20 years ago, those that were diagnosed with rheumatoid arthritis, didn't get meds until after the deformities. Now, after following those poor unfortunate souls and realizing that is NOT the way to treat RA, the rheumatologists say, symptoms? looking like RA? Start meds now!!! Now, I say! Because even though the deformity isn't showing, the bone lesions are (seen under MRI and ultrasound). Treat hard and fast with biologics and DMARDS and guess what? More folks with RA have less deformities, less joint surgeries, less disability time, less time off work, less pain, less agony. Now, let me clarify! RA folks still have these things going on 'cause sometimes the meds don't work, or cause side effects, or the rheumatologist just is a dunder head (and lets just say C's get degrees or have backwards thinking philosophies (you know those docs)) we still get swollen and misformed. But at least there are lots more options for us... My lucky thing is, because I'm treated earlier, maybe my hands won't be like my little lady patients that I see all cramped up and uncomfortable. I hope....

So, on to the ring splints - I currently have these homemade splints on my third and ring finger that look like magic plastic. And because my right hand was angry during work and wanting to be spastic, I got the neutralizing gauntlet of doom for my right hand to wear at sleep/rest (i.e. resting splint). I already had custom plastic neutral splints for my hands, but my new one I got today holds the fingers and the thumb in place while I sleep (don't try to scratch my face! OUCH!). So, the ring splints seem fine. When I get my low profile ones it'll will be much better.

For all those who suffer chronic pain, like RA - peace and find a small way to make your life more liveable, on your terms.