Monday, February 28, 2011

Something new to me

So, Saturday night, I picked up my daughter's new book Vampire Diaries and began reading it. I just wanted to check out the writing style, etc. I looked at my finger holding the book open, both hands, and they were dark. In the absence of light in the room (the light behind me in the kitchen was on) it looked like they were black.

I went into a panic. I've never seen my fingers turn purple before. From my 2nd knuckle to my finger tips were deep purple (even after the light was turned on) on all 10 fingers, all the way around them. Between the 2nd and 3rd knuckles, they were starting to change colors.

Oddly enough, they were very cold too. But, my hands have been cold before and not turned colors. My husband looked at them and just held them for a few minutes. I bundled them in a blanket for about 20-30 minutes and then looked at them. They were still slightly purple, but not cold anymore. About 1 hr after that, the normal flesh color had returned to my hands and finger tips.

I had looked at my feet/toes during this, and they were not affected with the same thing.

Looking at them today, I notice that one of the veins he looked at and asked if it was normal, is not as prominent.

Monday, February 21, 2011

The past 4 weeks

Not sure if it was the freezing weather that spawned the latest flare for my RA, but whatever did, I wish it hadn't. I'd feel semi-decent and then go out and quick shopping (between snow storms, or just to grab something that I need to finish dinner) and come home, feeling 3x as bad as I did in the morning and by the next day, I'd hang up any thought of being active.

I finally break down and get a refill on my tramadol. That helped. took the edge off the pain, although the pain was still near my threshold.

Of course, we had a great weekend, about 2 weeks ago, and I helped spring clean the garage. How I wish I only had sore muscles after that.

Then, giving into normal human urges...wasn't any help to me at all. It never is a good idea, I pay for it for 2 days, but...

Then, my body decides to revolt against me with the last methotrexate dosage. I've not felt that sick after mtx ever. I had to give in and spend most of the day Sunday in bed. I took my 3 mg of folic acid dosage (usually I just take one) last night and my stomach seems to be less angry with me today.

And, if things couldn't get weirder, my fibromyalgia decided to rear it's ugly head again. My clothing touching my skin sends sharp pain through me. That I haven't felt in over a year.

Today, although it's President's Day, doesn't mean anyone in the house is home but my 4 yr old and I. Kids are at school and hubby is at work. I think knowing I'd be alone today made me ignore most of the nausea/pain than I did Saturday and Sunday.

I can only hope things improve as the day/week unfold.

Thursday, February 17, 2011

Blog Carnival - by Rheumatoid Arthritis Warrior

SUBJECT: "Are Rheum patients pressured to not take medical treatment? Have you ever read an article that sounds like it discourages medical treatment for rheumatologic conditions? Whether the alternative offered is Eastern medicine, non-prescription medicines, or dietary changes, or spiritual advice, what would you liek to say to anyone who would tell patients to forgo medical treatment."

BLOG RESPONSE: I think the only time I can remember that it was suggested that I seek an alternative treatment for my pain, was when it sounded like my primary care physician (PCP) was giving up on me and the pain I'm deal with daily.

I went in because I couldn't handle the pain any longer, and I had not decided to find a new rheumatologist yet, and was asking what could be done for the pain, and if there was anything other than tramadol. He said that it seemed like Western medicine was not working and that I should try accupuncture.

And yet, now that I type that, I recall my chiropractor suggesting multiple times that I try this cleansing diet to lose weight because it will help with my pain. And, since I couldn't afford it, he wrote down the names of some items I could purchase at GNC that would do the same thing.

Last I checked, I didn't walk on my head, hands, so losing weight would NOT help with the pain in my neck, hands, wrists, shoulders. Yes, I could probably stand to lose weight, but since I don't snack all day, over eat, most of the "diets" out there are not for me. I was exercising, but as I got worse with pain, the exercise took back seat to everything else.

What would I love to say to people who haven't been in my (our) shoes, feeling the pain I (we) have, day in/day out at times, who think it's all in our head, that no medicine can help us because we need to think/do this or that.... wow...

Until people walk in my shoes, don't think that medicinal treatments are not a viable option. It may take a while to get into my system (everything takes a long time to get into the system), but they help ease the pain I feel and slow down the progress of my disease. I've had such great improvement on the medicines I'm taking and it's only been seven months. I don't go into the doctor's office begging for medicine, I go for the expert opinion of the person who studied my disease and knows how to treat it. I don't want more than what is going to help reduce the pain and have it barable.

None of what I'm feeling is IN my head. I'm not imaging the pain. I don't dwell on it. I won't talk about it because most people don't want to HEAR about what is happening with someone else, or, they have to one up the other person.

I'm open to other ways of treating this in conjunction with what I'm undergoing, as long as it doesn't conflict with my current treatment.

I don't want anyone to press upon me their thoughts/views as to how I need to be treated or what I need to look into for help. I want the doctors to listen and believe me, not think I'm fabricating things. I want family and friends to be there when I need to talk or need a shoulder to cry on, because 9/10 of the time, that's what I need from them. Not advice, just someone to listen.


I can't really remember when I first started having pain. The pain in my lower back has been plaguing me for many years. I've had problems with my joints before, but usually only when it's really cold outside. For that, I would just wrap them with an ace bandage and be done with it.

I started noticing my hands hurting shortly after my husband bought me an iPhone for our anniversary. It's a 3G and sort of had just come onto the market. So, I stopped "playing" on it and used it solely for calls. That didn't seem to make a difference. I can't remember if that was before or after our son was born in 06.

But, I do remember, that after he was born, I began developing a "rash" behind my ears (similar to what I had as a child, pre-pubescent) and on my face. Then it spread to my underarms and chest - which I didn't have as a child. I went to the doc and was told it was only seborrhea (sp) and given some cream and told to use Selson Blue. Well, when that didn't work, I went back and was told to do the same thing, but it had become infected, so they gave me an antibiotic. I was also experiencing a lot of back pain at the time, but I guess there was no putting 2 and 2 together.

Then, the pain started getting worse. My hips and knees and feet were horrible. I continued to walk, but my toes would get numb, but I kept at it, only to pay for it (not with sore muscles) for a couple days. I was given Mobic and told to come back, it could be OA. That he was going to do a bone density test. Well, as I showed up for my next appointment, the secretary some how didn't schedule it. By this time, I'd been seeing a chiropractor for nearly a year, because of my back, so I asked him at an appointment what could be going on, given my symptoms. He said it could be fibromyalgia.

So, at the next appointment with my Primary Care Doc, I mentioned it. I wish I hadn't. He tested the tenderspots. I had 15/16 of them. woo hoo (sarcasm) I now have fibromyalgia. Mind you, NO tests were done to rule anything else out, and because I have a broken lower back, spondylitis and psoriatic arthritis weren't even consiered.

So, I start a regime of different meds for fibro. The first was Lyrica with mobic. I basically got to a point where it wasn't working and I was distancing myself from the family. So, I found a new doctor. He ran test and my RF was high, so he sent me to a rheumatologist.

I walked in, she felt my hands, ran blood tests and scheduled a follow-up. My RF was still elevated, my Vit D lvls were extremely low. She felt my hands again and said there was no swelling, so it's not RA but only fibro and put me on neurontin. No one told me that I'd lose my sense of taste. That was bad. I ended up on something else along with mobic. But nothing was touching the joint pain I was suffering. My muscular pain and spasms subsided, fatigue came and went with the vit D getting back into my system.

Well, the new doc left and another took his place. SO, I went in and talked with him and the PA about my pain, the rash, etc. I felt like I was just talking to thin air with the doc and the Rheumatologist. I started doing studies.

The "rash" behind my ear resembles more pictures of psoriasis or sebhorrhea psoriasis than anything. The first derm I went to looked at me from 6-8 feet away and said nope, only seborrhea (more meds/creams). By this time, I'd been fighting the pain for 2-2.5 years. Could even be 3 yrs.

So, I got to talk to the PA. She agreed, my RF and rash indicate an autoimmune disease (gave me tramadol and another med for fibro that had an antidepressant in it), and scheduled a biopsy because the 2nd derm I saw (this was Jan of 2010 - so it'd been nearly 3.5 yrs now) would not do one. The results came back as a dermatitis that was caused by autoimmune disease. I went back to my original rheumatologist for her to feel my fingers, say no (RF was at 93 at this time), still only fibro. I left and cried all the way home. I wasted money and no one would listen.

I went to get my tramdol refilled, and saw the new PA at my doc's office. She ugh, more tears from me. She looked at my chart, said RA was not autoimmune and that my ANA came back neg, so my "rash" wasn't autoimmune.

I had given up. Decided to live with the pain until one of my sisters pulled me from my slump and I found a new rheumatologist who LISTENED to me. I got all my records and read thru them before I gave them to the new rheum. I cried for hours. My doctors thought I was faking it. That there could be no way I'm feeling what I was feeling.

I walked in, she talked WITH me. Not AT me. She wiped the slate clean and started over. This was June-July of last year. By this time, I'd become so bad, I couldn't walk to my driveway from my front door without immense pain.

She ran tests. Took me off all meds and gave me methotrexate and a shot of prednisone.

We are still working on getting the right combination of meds. As of December 2010, I'm on 15 mg of MTX a week, 4 tabs of sulfazine a day.

Things were working well until about 4 weeks ago. My depression is coming back in full force (maybe because it's hereditary) and the pain is unbarable. And, amazingly enough, the pain causes my "rash" to increase....

Thanks for reading.