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Optimistic and Reconnecting

Optimistic and Reconnecting

the city2

I can honestly say these last few months have been pure torture. Pain, sickness, stress and depression. No exaggeration there.  And yet, I feel optimistic.  Why?  Because God is with me, and the rheumatologist at the teaching hospital ROCKS!!!  I asked him if he’d be mine, and he said yes!  My new rheumy I mean.  Big C approves 🙂  I’ve never had such instant access to a doc before.  In my experience, you call the office and they have a system of blockers.  The front desk, then the assistant.  You don’t get to speak to the doc him/or herself unless you make an appointment.  I might get some flack for that, but I was an assistant and we were taught that in school.  It is your job to keep the patients away from the doc so he can get through his day.  And I mean patients calling in, not the ones in the office, lol.  Docs are busy and they always have a full schedule.  So medical assistants are crazy-busy and work especially hard.  Next time you go to the docs, let them know you appreciate them. They do all the behind the scenes work that no one sees.  Stepping down from the soapbox.  Anyway-the hospital has an e-chart system.  I always said I would never want my medical info online and now I love e-chart.  You can see all of your test results as soon as they come in, you can email your doc with any questions, and mine gets back to me THE SAME DAY!  Wee hoooo!  OK, it’s been a while since I’ve been here so I need to get my thoughts together and pick up where I left off.

New Doc told us to email him as soon as my rash came back.  On our previous visit, I brought pictures of my hand rash, knuckle-red-scaly-yuck, chest rash and my legs when they turn all pink/red.  He already told us that it’s really hard to diagnose retroactively.  After seeing the pics you could see the wheels turning.  He told us that there are two paths to take with treatment; IVIG therapy if it’s dermatomyositis or ‘the next step’ if it’s RA, Still’s.  He said since I’ve already tried and failed with methotrexate and Imuran, it’s the next step.  I didn’t ask which med for the RA, I was overwhelmed with his efficiency.  I found out that when my muscle symptoms and rashes first started I could have had a muscle biopsy to find myositis.  Now, he says, I have plaquenil and prednisone in me for 3 years it would mask the results.  So I’m scheduled for an MRI of my femur.  That should show disease.  I’ve gotten set up with an ophthalmologist because of the double vision that I have.  Turns out the yearly and baseline eye exams that I read about when I started plaquenil really ARE needed.  My (old) rheumy said I didn’t need them, that the percentage of eye issues was so low. sigh.  So I’m getting checked for toxicity in my eyeballs.  I’ve got an appt. with the Derm to biopsy my rash, a bone density scan, and a neuro appt to rule out Myasthenia Gravis.  I’ve only lost my legs a couple of times and fallen down the stairs but he wants to rule it out.  I feel like I struck gold in the healthcare hills.  Bout time and I deserve it!

The hospital has a tram that takes patients from the top of the hill to the bottom.  And vice-versa.  It reminds me of the ride at Great America that takes you from one end of the park to the other.  Boring, but you take it anyway.  It was a beautiful day so I asked C to pull off at the vista spot so I could get some shots of it.  So we got out and I started snapping away with my soon-to-be-broken camera. yes, broken. and this was my point and shoot.  my Nikon D60 is laying in it’s bag, broken too…

weeeeeee
weeeeeee

I noticed when I was resizing this that there is a person on board and it looks like he/she is looking at me.  It looks kind of ghostly actually, spoooooookyyyyyy.


through the treees

This next shot is one of the tram but with many, many trees in the way.  Even though it goes along that wire pretty slow, I was panicked that I wouldn’t get a shot. So I kept my eye on the viewfinder while screaming over to C “where’s it at? Is it coming yet? Argghh, all I can see are trees!!!”  Good times.

Everything in our backyard is either blooming, budding or just screaming to be photographed.  It’s been driving me nuts so I’ve channeled that creative energy into editing my old photos.  I have a couple thousand on this computer but it only goes back a few years.  I have every great pic of my kids when they were younger sitting in a dead desktop comp on my closet floor.  But-I was visiting my dad a few days back and in his iPhoto are shots from the 90’s!!!  I almost started screaming, my kids! my kids!  Instead I said in a high-pitched squeal ‘Can I burn all of these on to disk?!?!’  He didn’t have his hearing aids in and I startled him, lol.

Alright, my eyes are blurring.  I’m on the 3rd day of a migraine.  This is a first for me.  I’ve had a weird head pain that lasted for months, but this is a true blue migraine.  I’m sitting here typing in my J-Lo pink glasses…Yah, I think it’s time to buy a new pair.  I’m coming back tomorrow.  I need to keep writing or I’m just going to isolate again, and I just can’t have that.

Until next time,

2michelle


The Power of 10

The Power of 10

I am bed-bound at the moment and pretty darn low.  I have written and revised and rehashed a post until is was about 2 sentences long to cut out all of my whining and/or negativity as my body is really kicking the crap out of me.  I’m just going to post this awesome video about Erica.

The Arthritis Foundation has a campaign called the Power of 10.  You watch the video, forward it to 10 people, and give a gift of 10 dollars.  Let’s spread the word.  Just click on the Power of 10 link and check it out.  What a really great simple way we can all make a difference.  God Bless.

Thanks for hanging in there with me,

2michelle

Docs playin peek-a-boo with diagnoses

Docs playin peek-a-boo with diagnoses

I have some good news-(drumroll please) I finally got Medicare ( woo hoo!!!!)!!!  I went 3 years with no insurance after I lost my job.  The amount of money I owe for medical bills is astronomical.  I think I can safely say that my credit isn’t credible anymore. No one will be giving me any loans in this lifetime, ha!  Good thing I have The Big C.  I told him if he tries to leave me I’m grabbing on to his ankles and he’ll have to try and run with me holding on.

Anyway, back to the Medicare.  My primary care doc has given me a referral to be seen at the big state teaching hospital.  Yeeeee hoooooooo!!!!!  I finally have some kind of coverage that gets me in the door.  I am so happy.  For the past 3 1/2  years I’ve had doctors scratching their collective academic heads and going hmmm.  Then I get a diagnosis, and I get it taken away.  Peek-a-boo! It’s here and then it’s gone…  The only one that hasn’t been taken away is the small fiber neuropathy.  That’s because I had a biopsy and they could actually see it and diagnose it.  It sucks that so many autoimmune diseases don’t have one clear test.  It’s more of a symptom game and then you have to have a rheumatologist who’s willing to put their neck out and actually diagnose you before the average 6 to 11 year time-frame.  As soon as I told my rheumy that I was going to be seen at the teaching hospital, he backpedaled on the Still’s and dermatomyositis.  Even though I have the rashes and skin issues that go hand in hand with each and solid bloodwork.  I just can’t wait to be seen at this hospital, I’ve been too sick for too long.  I’m going to be seen in the rheumatology clinic but was assured that they would take a team approach on me and try and figure out what’s causing my Cushing’s and chronic edema before I explode.  It wouldn’t be pretty that’s for sure.  I am flaring with my RA right now ( I mean UCTD again) so I’m in a lot of pain in all of my joints and it makes it worse from my hips down because of all of the water pushing the bones in my feet apart and the pressure in my knees.  As me and C would say, Oy! My pancreas! It’s what we say when we realize that either one of us is going on and on and on about body parts.  It means, shut up, you sound like one of those  people that like to tell you all about all of their aches and pains when you say hello.  If you could feel your pancreas hurting, your pretty much hurting everywhere.

Change of subject: Here’s kind of a happy thing, for me anyway-  I finally got Photoshop elements 8!!!!  I am a digi scrappin fool I tell ya!!! I also got a few new kits from a wonderful designer and friend.  And, I bought My Memories Suite. Yeah!!!  That’s where I’ve been spending my free time lately.  I am hooked. I could spend days just cruisin the online shops for kits, actions, or just elements.  But-I don’t have much free time, or not as much as I would like that is.

The other day I was searching for the video camera.  Our house is a little ‘cluttered’ now that I’m on a break from housework, ha!  I was going through stacks of stuff in the corners of our family room and I found my bag of knitting.  I just stared at it and was like, oh wow.  When is the last time I’ve seen that bag and how did I ever have the time to knit??  I remember sitting on the loveseat upstairs at night and going through new patterns.  What life was this in?  I swear there aren’t enough hours in the day now.  And I’m home all day so I don’t get it.  It seems like I had more time when I was working full-time, but how can that be?  Maybe it’s like money.  The more you make the more you spend.  The more time you have the more you need.  I don’t know but I felt a little sad just thinking about it.

I’m off to check on some websites and figure out which ones I’m going to drop.  I have way too many social media sites and I’m thoroughly addicted to those too so this is going to be hard.  I know for sure I’m keeping my Christian women sites, all of my photography sites, and facebook.  The rest is going to be hard to choose.  I’m leaving you with a few shots from this time last year.  Right now we are having a cold spell (12 degrees at night brrr) and at this time last year we had this freak snow-then-ice storm that left us without power, freezing, and me taking a million shots of the ice.  Enjoy and until next time

2michelle

Reaching
Reaching
Ice on Top
Ice on Top
Stuck in the Middle
Stuck in the Middle

no copy or use of photos allowed without express written consent from genius, uh I mean blog author  🙂

The Arthritis Foundation, “Inspiring Others”

The Arthritis Foundation, “Inspiring Others”

This video asks to forward on to friends and family and this is the fastest and easiest way to do it!

I heart the Arthritis Foundation!

I’ve been gone for a few months.  I’ll go into that in another post, loooong story.  I would like to apologize to all the readers who left a comment in my absence.  I have comments set on moderation so they won’t show up until I see them and unfortunately I didn’t get them up until tonight.  Thank you for reading my blog, and thank you for your comments.  I will respond to them tonorrow, my eyes are closing. (wimp here)  Thanks again everyone for hanging in there with me.  And don’t forget to forward the video!!

Until next time

2miichelle

Easter naps, fat legs, and Bowie

Easter naps, fat legs, and Bowie

.: Easter Eggies :.
Image by Warm ‘n Fuzzy via Flickr

I spent this Easter in bed, dozing off and on with the laptop sliding off of my legs every now and then.  Not my ideal Easter.  The Big C cooked a delicious ham with all the fixins- and I slept.  The kids had an egg hunt, and I slept through it.  A few of my grandkids got overly boisterous and got time out, I slept through it… lol.

I’m so tired of being sick and tired.  And yes, I know that expression is tired, but it’s so freakin true. I haven’t been around much because I’m afraid to just blog about negative stuff, or sound like I’m whining.  Each day I think about a post and I end up not doing it either because I am too sick, or too depressed.  I refuse to let that get the best of me!!  So every once in a while there will be a post with a lot of whining and bitching…no big deal, right?

Here I go…

Read More Read More

*2009 Advocacy and Kids’ Summit (and stipends to go!)*

*2009 Advocacy and Kids’ Summit (and stipends to go!)*

Did you know that over 46 million adults have arthritis and over 300,000 kids do as well? You have a chance to tell Congress that more needs to be done, at the 2009 Advocacy and Kids’ Summit!

At the Summit you will meet personally with your Members of Congress, or their staff, and will have the chance to tell your story.  How has it affected you?  Your family?  What is day to day life like for you?  Anything you would like to say about living with JRA, RA, osteoarthritis, or if you suffer from one of the more than hundred other forms of arthritis?  Now’s your chance!

Advocates will learn how to best communicate with their elected officials, attend a training workshop to improve their advocacy skills, meet with other advocates and network, and more.

Look forward to getting together with not just Members of Congress, (which is huge btw) but also people just like you and me; people who have arthritis and can relate to all of the trials and tribulations.  It’s not just a matter of pain, even chronic debilitating pain… but money issues, health insurance or lack thereof, medicines, stress on family life, marriage, etc.  We all need to know we are not alone, and boy, we sure aren’t with numbers like those above.

Register now for the 2009 Advocacy and Kids’ Summit, Capitol Hill, Washington D.C., March 2-4, 2009.  For more information please click this link here.

Here’s some good news- The Arthritis Foundation Public Policy and Advocacy Department is offering stipends to attend.  Stipends are limited to $1000 for an individual to $1200 for a family.  Application deadline is Monday January 12, 2009.

I’m going to list the congressional districts or states eligible for the stipends. If you are eligible and would like a copy of the application please contact the Public Policy and Advocacy Department at advocacy@arthritis.org or 202-887-1700

Congressional Districts or States Eligible
1.    Richard Shelby, AL
2.    Lisa Murkowski, AK
3.    John B. Shadegg, AZ 3rd
4.    Mike Ross, AR 4th
5.    Nancy Pelosi, CA 8th
6.    Barbara Lee, CA 9th
7.    Anna Eshoo, CA 14th
8.    Michael Honda, CA 15th
9.    Lois Capps, CA 23rd
10.    Henry A. Waxman, CA 30th
11.    Hilda L. Solis, CA 32nd
12.    Lucille Roybal- Allard, CA 34th
13.    Diana DeGette, CO 1st
14.    Rosa L. DeLauro, CT 3rd
15.    C.W. Young, FL 10th
16.    Nathan Deal, GA 9th
17.    Daniel Inouye, HI
18.    Mike Simpson, ID 2nd
19.    Jesse L. Jackson, Jr., IL 2nd
20.    Jan Schakowski, IL 9th
21.    Steve Buyer, IN 4th
22.    Tom Harkin, IA
23.    Pat Roberts, KS
24.    Edward Markey, MA 7th
25.    Mike Rogers, MI 8th
26.    Betty McCollum, MN 4th
27.    Dennis R. Rehberg, MT
28.    Dina Titus, NV 3rd
29.    Judd Gregg NH
30.    Frank Pallone, NJ 6th
31.    Jeff Bingaman, NM
32.    Nita M. Lowey, NY 18th
33.    Sue Myrick, NC 9th
34.    Tim Ryan, OH 17th
35.    John Sullivan, OK 1st
36.    John Murtha, PA 12th
37.    Joseph R. Pitts, PA 16th
38.    Tim Murphy, PA 18th
39.    Patrick J. Kennedy, RI 1st
40.    Bart Gordon, TN 6th
41.    Marsha Blackburn, TN 7th
42.    Joe Barton, TX 6th
43.    Michael C. Burgess, TX 26th
44.    Gene Green, TX 29th
45.    Jim Matheson, UT 2nd
46.    Bernard Sanders, VT
47.    Jay Inslee, WA 1st

* * cross posted at Wellsphere.com, right here 🙂

I would do just about anything to be able to go to this summit.  Not only can we not afford it, my health has been so bad these last 3 months, I wonder what the future holds for me.  I WANT to be well, I am doing my positive thinking, taking all of my meds, saying all of my prayers, and waiting.  Some days are good, but most are not and I’m really really trying to see the sunny side of life right now.  We have to pick up prescriptions tomorrow and they are going to set us back $1000.  Each month that’s what we pay for my meds.  If any of you go, please contact me when you get back and tell me all about it!!  I’m posting the video that the Arthritis Foundation has put out from last year’s summit.

Until next time

Coma sleep, with a side of hot burning legs please

Coma sleep, with a side of hot burning legs please

I don’t want to order that but it’s been on my plate now for a few months.  I’m starting to get really discouraged and depressed.  My Rheumatologist wanted to see me the next time my hands blew up.  (they actually blow up, it’s gross) So anyway, I’m flaring really hard and always as a precursor to a flare, my knuckles get really red, like shiny red, my eyelids become really swollen on top and hang over my lids (gosh I feel sexy just typing this…) and then my hands start to split open all over the place.  Sometimes they swell in my sleep, sometimes not, but either way they are monstrous.  Soooo, 2 weeks ago my hands start up again.  But I forget I’m supposed to go in.  Towards the end of the monster hand I remember and call him up.  I get to see him the next day and they are pretty much healed.

He says he can still see the damage and it looks like the dermatomyositis.  Okayy.  He ran the whole shebang of labs; ANA, sed, C-reactive, Comprehensive Chemistry, RA factor, and anything else he could scribbble in.  So I call this morning to find out the results and the nurse comes on the line and tells me that Dr. wants to speak with me personally and set up a plan of action.  So I wait. And wait.  I’m thinking all of the worst things imaginable since I am such an optimist at this point in my life….why in the hell couldn’t she just tell me the numbers, she always does… finally I call and tell the receptionist I am in the throes of anxiety waiting for the call.  She informs me in an official tone that ‘Doctor is still seeing patients and cannot come to the phone. He will ring me after 5.’  Well, luckily I went back into my coma sleep so I didn’t have to smack everyone’s hands off the phone.  I so smartly decided months ago to cancel call waiting because it bugged the crap out of me whenever I was on the phone hearing that beep beep beep, only for it to be a telemarketer, or bill collector.  Right at 5 he calls and tells me that other than my ANA being positive, all of my numbers look pretty good just like last time.  He says we’re damned if we do, and damned if we don’t.  I don’t ask him what we’re damning about because I’m pissed that I worried all day for this.  He told me the plaquenil could very well be keeping my numbers at bay. Well, it’s not keeping my symptoms at bay.  I’m sick and tired of being sick and tired.

When I first came to him before I got on any meds, my numbers were through the roof and I couldn’t walk without assistance.  My PCP told me I had Lupus (prematurely based on one lab test) and my Rheumy was hesitant to say for sure what we were looking at; RA with some dermatomyositis and palindromic rheumatism thrown in for good measure.   That’s what the labs and symptoms told him.  Now he says the plaquenil is working, I’m walking much better, my numbers are low but I’m flaring more often than not.  I’m frustrated that I get a diagnosis, then have it taken away.  Again and again.  Right now I’m back to Undifferentiated Autoimmune Vascular Disease or Undifferentiated Autoimmune Disease, Connective Tissue Disease… Then it will be MCTD, then back to the early RA with dermatomyositis and so on.  Never in my life have I WANTED a diagnosis, til now, I just want to make sure I’m on the right meds for the right disease.  I don’t want any joint damage.  We tried methotrexate but it made my legs freeze and burn right down to the bone so he discontinued that but didn’t try anything else.  One thing he says he is sure of is it’s not Lupus like everyone thought in the beginning.

Is this a rambly confusing post from a frustrated woman?  Yes.  I haven’t posted much of anything lately because I have just been too sick to even want to sit down and type.  But last night I couldn’t sleep a wink after 1:30 so here I am!  I’m going to post a pic of my hands when they were on the mend.  You can see the rashy red spots, but there were no splits in this shot. I also got turned on to a video on myositis, it touches on the basics, but it’s interesting and it’s good to see someone talking about it.  And last but not least, I  posted some more photos in the Happy Snaps.  Those are cool and stress free, LOL.  Every shot I’ve gotten so far has been right in our yard.  I’m lucky to have such beautiful flowers pop up.

Today will be a better day!!

Until next time

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