Jump to content


Biomarker for Diffuse Scleroderma skin has been discovered!


barefut impressions



Photo

Cyber Sclero Sisters Meet!

Posted by barefut , 31 August 2011 · 1,218 views

It is with great pleasure that I am able to tell you that our Sweet Pam is just as Sweet IN PERSON as she is here in the forums!

On Saturday August 20 Pam, her hubby Brian and their little fluff ball Pomeranian arrived in Port Townsend, via their way cool speed boat, to meet me. Little old ME! Yes, there were tears.

I met Pam online when I joined ISN back in 2006. For awhile I was a support specialist alongside her. I have always wanted to meet her and thought it would be possible ‘someday’ as she lives just a hop skip and a jump over the Cascade Mountains from me. I am so grateful that she and her wonderful husband, Brian made the effort to make it happen.

We had so much fun! After the boys and I picked them up at the marina we went out to visit my sister and brother-in-law at their mini farm. After a short tour we sat on the covered porch of the barn, enjoyed the cool breeze and talked while my youngest son Henry brushed Bob the sheep.

We came home for an easy dinner of pizza. It was so great to have her here in my home. I wished she didn’t have to leave. Just before dusk we drove them back to the marina. I think my boys asked Brian for a boat ride and before I knew it we were speeding along Port Townsend’s bay at dusk, looking at the lights of town and enjoying the delighted looks on my boys’ faces.

Braden got to drive the boat, Henry was too afraid he’d wreck it, but was happy to sit next to Pam and I and enjoy the wind in his face and the speed of the boat. I enjoyed seeing my town from the waterside, a view I have only seen from the ferry so it was nice to get a closer look. We boated out to the lighthouse. On the way back, as we approached the marina, I started to feel a lump in my throat as I knew I was going to have to say good-bye in a few minutes.

It was almost dark once we docked. There were hugs all around, more tears as I choked back that lump in my throat and then we were on our way back home. I felt like I had known Pam all my life. She and Brian felt like family. They ARE now my family! The boys and I are planning the trek over the mountains next summer to visit them. And if my evil plan works they will be moving to Port Townsend soon!


Photo

Head Shrinker

Posted by barefut , 07 July 2011 · 1,203 views

So my oldest son, Braden (13) had never heard the term "head shrinker" before and when he saw the note I wrote myself reminding me of my first appointment with a mental health counselor, he thought I was having plastic surgery.

I have not seen a counselor since my diagnosis 5 1/2 years ago, though I have struggled with depression off and on all my life. Lately, and by lately I mean since I quit working a year and a half ago, I have been struggling with it again.

For those who suffer with depression or are close to someone who does, I don't have to tell you what an insidious monster it is (hey, kind of like scleroderma!) Social isolation, lack of motivation, prolonged sadness, apathy and hopelessness take over and on a good day, you feel like an extension of the couch you lie on. When you DO care about anything, the feeling is guilt for not being, doing, accomplishing what you think you should. And then more sadness for being AWOL on your kids, and other loved ones and feeling like you are losing/wasting precious time, precious life.

All the things you once loved doing are now chores and all the chores you once hated doing are absolute impossibilities. Daily, hourly weeping feels good because at least you are feeling something. However, it does sometimes get in the way when you are pumping gas and you start bawling for no apparent reason. The last thing you want is complete strangers asking what is wrong and if you are okay.

So, I am seeing a head shrinker now and if she really could shrink my head that would be great because between my weight gain and the prednisone, I am pretty much hating my chipmunk face.

She, we'll call her Deloris, gives me homework assignments. The first week's assignments were geared towards getting back to doing the things I love and reducing stress. So #1. Write. Just keep writing. Even if it's just a line or two just write. #2. Let my boys work out some of their squabbles (nice word for it) with each other, on their own. #3. I don't remember #3 but hey! 2 out of 3 ain't bad!

At today's appointment I cried about feeling guilty and like a loser when my sister comes over to do her laundry and then always cleans my house when she's here. So, we are working on getting rid of the guilt. My assignment: Repeat, "I have an illness, I AM NOT THE illness." whenever I start to feel like a worthless loser. However, I cannot let myself use scleroderma all the time for my lameness.

Finding balance is hard.


Photo

Supplimental Security Income Approved!

Posted by barefut , 06 April 2011 · 1,826 views

Money in the bank. Bills paid. What a relief! :happy-dance-line:

So tired today - must go nap. Wanted to spread the good news first.

Everyone take good care!


Photo

When My Boys Have Left The Nest

Posted by barefut , 24 February 2011 · 1,160 views

When my boys have left the nest
Am I going to miss their mess?

Will I be a sad mom lonely and old
Sitting in a clean house missing the mold

The wet towels on the bathroom floor
The toothpaste in the sink that makes me roar

Moldy dishes in their window sills
Muddy footprints and sticky spills

Dirty socks behind the TV
Suckers in the carpet and pee on the seat

Candy wrappers everywhere
Bubble gum stuck in their hair

All these things that make me weary
When I am old, will I be teary

When I am old will my only wish
Be for a muddy footprint, a moldy dish

My heart and head says today embrace it
Because tomorrow I will want to retrace it


Photo

Slacker Mom from November 5, 2008

Posted by barefut , 22 February 2011 · 943 views

05 November 2008
Posted by barefut
Okay Barb, do you want to stop making me cry now?

I couldn't agree with you more on all points except for maybe the part about me dealing with parenthood immaculately. I muddle through. Seems I am constantly looking for role models and asking every parent I know, "Do you run into this (or that) - what do you do?" As with Scleroderma, I guess I just don't want to feel all alone in this uncertain adventure called parenthood.

Then there's my two subtypes of being a Parent:
1. Single Parent
2. Single Parent with Scleroderma

Yes, we are rare. I would like to bend the ear of other single parents with scleroderma. I don't know of many. Maybe I will put out an all points bulletin in the Sclero Den. I think I need to be relieved of some of my guilt by knowing I am not the only one who ...parents like me. For me, sclero mom equals slacker mom.


Photo

Mental Evaluation and SSI

Posted by barefut , 12 February 2011 · 1,209 views

My mental evaluation went very well. I passed where I was supposed to pass and failed where I was supposed to fail. YOU count backwards from 100 by 13's! Then try and remember 4 words she had you repeat 5 questions ago. :dont-know:

I followed directions well - folding a piece of paper in 1/2 and placing it on her desk. :woo-hoo:

In the end they said they will recommend that I get SSI and ASAP! :happy-dance-line:

Then same day, I get in the mail another letter from DSHS. Due to state budget cuts, beginning March 1st, they will now be counting Supplimental Security Income against Temporary Assistance to Needy Families to reduce befefits.

I swear there must be some guy in an office watching me and waiting to spring new rules into the system based on when I am granted any kind of benefit.


Photo

Update on me

Posted by barefut , 06 February 2011 · 1,033 views

Hey,Hi! Long time no blog. So, the latest on me is that I have been denied Supplimental Security Income and so have hired an attorney on contingency, to help me with the appeal process. Little did I know, the Department of Social and Health Services has a person designated to do just that. Wish I'd had known - could have saved myself a little money perhaps. But DSHS was pretty slow in letting me know that and I don't have time to dilly dally.

Our Governor cut Temporary Assistance to Needy Families. My benefits went from $562/mo (which used to cover the mortgage with some gas money to spare) to $478/mo. With no child support and no chances of ever getting any, I need an approval and quick!

The Social Security Administration is requiring me to see one of their doctors. My appointment is in 3 days. It's for a mental exam. Piece of cake. I'll have no trouble failing. :wacko:

So how have I been making ends meet in the mean time? Charity. Lots of charity. I don't know what I'd do without Energy Assistance, not to mention the kind and generous support of our local St. Vincent de Paul and Olympic Community Action Programs to help with my water and garbage bills as well as gas and personal hygiene products. I am nearing the end of my annual allotment from these organizations so things are starting to get a little stressful. I am able to fill in any other gaps by providing childcare once in awhile and by selling things I find around the house. Been trying to get rid of some tires for 8+ months!

As far as my health goes, everything has remained pretty status quo with the exception of some increased stiffness in my hips and some new nerve pain - fatigue ruling my life as usual. My next check up with rheumatologist, pulmonologist and pulmonary function tests is in April. I had to reschedule them from this month because I had no money to get there as it is a 2 1/2 hour travel time with crazy high ferry fares not to mention gas and parking.

Well that's about it on me except that it is SUPERBOWL SUNDAY and I have to finish making my BBQ pulled pork and get over to my friend's house for the game! GO PACKERS!!!!


Photo

Missing my Blog Buddy

Posted by barefut , 16 December 2010 · 892 views

Oh where oh where has my little Barb gone?
Oh where oh where could she be?

With her sharp wit and humor and even poems too
Oh where oh where could she be...?

Missing you Barbara Lowe! As you can see, we need your poems and stories of life on the farm and in the radio booth. Nobody wants to hear me try to make a rhyme!

Wishing you all the best and hoping all is well with you and yours!

(You can hear Barb on the radio from the UK at www.chorley.fm "The Morning Show with Babs" begins at 9am UK time) ~ Love ya lady!


Photo

Another Update on me

Posted by barefut , 15 December 2010 · 1,127 views

Good grief! Long time no blog. Well since that last post, I have quit the Imruan and gone back on the Cellcept. It seems I was having increased pain and fatigue with the switch but now that I have been back on Cellcept, I don't feel much different anyway. :emoticon-bang-head:
Also back up to 4mg on the prednisone. Truth be told, I function best at 10 mgs but doctor wants to keep me under 5.

Had my upper endoscopy in August and I swear my gastrointerologist forgot to do the esophageal dilation. There was no improvement at all! Then I had a tarry stool on Thanksgiving so I thought I should mention it to him (even though it only happened that once). doctor wanted to look again because it could be a sign of an upper GI bleed. And since I had told him that the first dilation did nothing, he did it "again". THIS TIME it made a huge difference. I swear I can even breathe better! I hear some people must have this done yearly. I would say so worth it! Oh and no bleeding - I didn't think so. If there was, it had plenty of time to heal before he got around to lookikng in there.

I made a mistake in my last blog entry. I meant to say that my Social Security Disability was denied due to lack of work credits. So I applied for Supplimental Security Income and was also denied. I have secured an attorney who works on contingency and will only take 25% of the back pay with a cap at $6,000. Worth it to me to let her fight my fight for me.

Another holiday fast approaching and been trying to pace myself and pare down activities but I still feel myself going down for the count. Have not been sleeping well, the restless legs are tap dancing all night. Saw my sleep medicine doctor also this week (getting them all done at once!) She increased the Mirapex and suggested taking it earlier in the evening.

Well, friends I am off to bed! I will try to entertain you more frequently with my lists of woes because I know you all are SO interested! So stay tuned for the exciting adventures of.... the mammogram! :(


Photo

Hope

Posted by barefut , 03 November 2010 · 977 views

It’s one thing to not be able to sleep. It's another thing to also not be able to do anything else while you lay awake hour after painful hour counting body parts that ache and burn and cramp and sting.

There can’t be any greater aggravation than being so sleepy and bone tired, exhausted and spent that you aren’t even able to get up and do anything pleasing or productive with all those sleepless hours. And knowing that the reason for your bone tired exhaustion and fatigue comes not from the hard work of being a productive member of society, but rather from an autoimmune disease where your own body has betrayed itself by attacking all that is good and useful and necessary for life.

While my heart screams, “I’m not done!” my body screams, “Yes you are!” And so the battle goes. Day after day after day.

And so I look for meaning in all of this. What am I supposed to do? I am supposed to do something. Because there is a good reason and a higher purpose for everyone and everything on earth, good and bad. There is a silver lining, a lesson to be learned. Even in the wake of the most terrible disasters there is good to be found, if you look for it. And so I look for it. Everyday. I look for it. And I count my blessings and I add to my list of things to be grateful for. Everyday.

And somewhere in there lies hope, sometimes big, sometimes small but it is always there. Hope for a better day, hope for my children who are also affected by their mother’s disease, hope for those who are affected with this disease way worse than I am. Hope for a cure.






Search My Blog