Jump to content

Do you want up to date information about Scleroderma? Check out our Medical pages at www.sclero.org for all your Scleroderma questions!

barefut impressions


Update on Me

Posted by barefut , 04 July 2010 · 984 views

After 4 1/2 years on it, I took my last dose of Cellcept this morning. I started Azathioprine (Imuran) a few months ago and doctor said it's time now to quit the Cellcept since my lungs have remained stable and my skin "looks good". Its nice to be eliminating a med for a change.

The Azathioprine is supposed to be able to do a better job at handling my myositis - or at least that's what the plan is. Hard to tell any difference yet since I am still (again) tapering off of Prednisone and am currently at 3mgs. I started tapering from 5mg and am going down by 1mg a month. I think I may need to taper even slower as I wake up every morning feeling like I've been run over by a bus.

Today my hands are painful, stiff and swollen. My fingers swell up to the point where the skin around my nail folds cracks and bleeds. Amazing how such a tiny thing could hurt so much. The rest of me is in hobble mode and battling some killer fatigue.

In mid August I am having an upper gastrointestinal endoscopy with a possible esophageal stretch done at the same time. Some of my meds have been getting stuck and dissolving in my throat.

I discovered that I am not eligible for SSI due to lack of "work credits". I must have worked at least 5 out of the last 10 years and I have been stay at home mom most of that time, only working or I should say, only having an employer, for the past 2 1/2 years.

I have 4 months left to appeal my long term disability denial from the private insurance company my employer provided. I have an attorney willing to take my case on contingency but they will take 40% of any monthly payments (a minimum of $10,000). My approximate monthly income would be 60% of my gross wages and then 60% of that, leaving me with about $800/mo. I guess its better than a poke in the eye, especially since I am still receiving no child support and most likely never will.


Suck It Up!

Posted by barefut , 26 May 2010 · 888 views

Wah Wah Wah. Even I get tired of hearing myself complain. Not that that's all I do or anything, just that if there's one thing I am more weary of than my daily ailments, it's hearing myself whine about it. Nobody wants to hear it, and it really does not make me feel better so what's the purpose and the point?

I suppose it's just a bad habit now. Not to mention a knee jerk reaction to any kind of pain: "OWWW my aching legs! OHHH my feet are killing me! OWWW my right shoulder!.....I sound like I'm 95 years old. In fact, my 95 year old grandmother complains less and she's now in a nursing home and entitled to complain!

SUCK IT UP! My other voice says. You have been through the wringer and are tough as nails, otherwise you wouldn't even be here. I hear my boys' coaches telling their players to "suck it up" and "walk it off". I think I need a coach. Someone to help me get out of bed in the morning. Actually it may take more than a coach. It may take a drill sergeant.



Posted by barefut , 13 April 2010 · 1,431 views

I didn't think it was possible at this point but I think my mouth is actually getting even smaller. And my face is itching like mad! The cobwebby feelings are back and driving me nuts! Chewing is fatiguing on my jaw. Eating a granola bar is a total workout! Forget about gum. My jaw and neck and shoulders are so tight I have had a tension headache for a week. Sleep? What is sleep?

A spot on my left thumb itched so badly yesterday that I made and popped a blister by rubbing it and I didn't even realize it.

My feet cramp up all the time and after an hour of grocery shopping, my heels feel so tender and bruised I can barely walk.

My right rotator cuff is messed up pretty good and I can't raise my right arm so I can't put on a bra or brush my hair, and brushing my teeth left handed has left a lot to be desired in the oral hygiene department.

So here I am, a small mouthed, itchy faced, sore thumbed, crabby, sleep deprived, hobbling, braless, bedhead with bad breath. I just want to hibernate. :emoticon-bang-head:


Update on Me

Posted by barefut , 29 March 2010 · 929 views

Well I've been on Azathioprine (Imuran) for at least 2 months and I have noticed a slight improvement in my muscle pain and stiffness, although I am still weaning off of the prednisone (again) only this time more s l o w l y! I am at 4mg as of now.

I enjoy being able to stay at home and take proper care of myself and my boys. I have been eating better, napping and going for short walks. I have even spent some time pulling weeds! I want to start swimming and join a yoga class.

I am receiving Temporary Assistance to Needy Families (cash) which pays the mortgage. And food stamps which feeds us well. I also have assistance with my utilities. Still no child support. I have applied for long term disability insurance through my former employer and, if you read my latest post, feel like I flunked my recent telephone interview with regard to this.

Then my sister reminded me about my trip to Swedish Medical Center last May. I went to the ER with some symptoms of transient ischemic attacks (TIA's) and was sent to Swedish for a neurological work up. I passed. And so then was referred for a sleep study where it was found that I do have sleep apnea but only when sleeping on my back, so not bad enough to have to have a C-Pap (glad!). All of this to figure out why I am having memory and concentration problems. I forgot about this and so did not give the insurance company these medical records. So maybe I'll have a leg to stand on after all? But only one, and only if it's not too late.

Disability income or not, I am hoping to feel good enough this fall to reopen my preschool. I had so much fun with that and I miss those preschoolers a lot! I would hold classes Monday, Wednesday and Fridays from 9am until 1pm and take only 4 - 6 kids. Surely my body would let me do that by this fall?


Family Medical Leave of Absence - Free Fall...Splat!?

Posted by barefut , 01 March 2010 · 954 views

Back in November, after seeing my boys dig through the dirty laundry for the umpteenth time for something to wear to school, I had an epiphany, or a breakdown, whatever you want to call it. I collapsed on the couch in utter defeat, scanned my living room, which looked like a bomb went off in there, and I finally decided that something’s got to give. I have got to start taking better care of myself and my boys and the only way that is going to happen is if I use my Family Medical Leave to reduce my hours to part time.

I was exhausted, sleep deprived, brain dead, in pain and depressed. I was no good to anybody, not myself, not my boys and not my employer. I saw my rheumatologist and she agreed that I needed to slow down, take it easy, and get more rest. I had weaned off prednisone and my muscle pain and inflammation had come back with a vengeance. I needed help getting out of bed, and out of my recliner. Those automatic lift recliners were starting to look pretty good to me. I was actually using a cane at home and wishing I had it at work some days but I would not dare take it out of the house! I couldn’t even stand to hear myself ask my sons to “bring me my cane” so I named it Ilean. Sounded better to say, “Could you bring me Ilean?” or “I need Ilean’s help…”. I even found myself eyeing those fancy walkers…but NO! I would not go there! I am only 44 years old and I will not even consider leaving the house with a cane or any other kind of mobility device. Not yet.

Working part time was helpful but after about a month I ended up taking my FMLA as a total leave of absence. It kind of feels like free falling. I like the ‘free’ part best. I am free to take a nap when I need to, free to make my doctor appointments whenever I want to, free to take a long, hot, uninterrupted bath in the middle of the day or free to stay in my jammies and unshowered all day if I want to.

Also free to feel vertigo half the day and spend the other half the day on the toilet (MY toilet!). Free to be nauseous and unable to get out of my chair, Free to go sleepless at night and be irritable and brain dead all day. Yipee! But I am FREE to do this! I don’t have to go to work feeling like all that.

Yes, free is great! Falling is…..not so much. I’m sure I will wake up from this honeymoon stage and go splat here any day now and I’m sure it won’t be pretty either. Stay tuned for the *splat*!



Posted by barefut , 09 December 2009 · 1,208 views

My seven year old caught me crying over my keyboard while reading the John’s Hopkins website on Myositis. "Mom, it says, ‘medical treatment’, what happened?” I hear his sweet, innocent little voice say. I wipe my tears and tell him, “Nothing happened, it‘s just that my hips and my shoulders and my elbows hurt and I’m just reading about how to make myself feel better“. That seemed to satisfy him. He gave me a hug and went back to his cartoon.

About 50,000 Americans have myositis; apparently even rarer than scleroderma, this autoimmune inflammatory muscle disease is also incurable. I will soon start another immunosuppressant medication to try and bring the pain and inflammation under control. I am waiting on DNA test results which will tell me if I am susceptible to a rare and dangerous side effect before my rheumatologist will proceed with treatment.

In the mean time I am back on prednisone and bummed because I just finally weaned off of it 3 months ago and it took a long time at a reduction of 1mg/month. Now I have to start all over. Prednisone, although a precious miracle of pain relief at the right dose, comes with a host of unpleasant side effects like weight gain, irritability as well as dangerous side effects like kidney failure. So not a good thing to be on long term especially at doses higher than 10 mg/day.

What I learned about myositis on the John’s Hopkins’ website is that there are important lifestyle changes to make. For example, they recommend following a doctor-prescribed exercise program which might include physical therapy, whirlpool baths and gentle massage. Resting and pacing, and limiting activity is very important. Working with a nutritionist can be beneficial. And my personal favorite, reducing stress is vital, such as with yoga or biofeedback exercises

I’ll order my Jacuzzi tomorrow, right after I quit my job, see my therapist, go to yoga class, see my nutritionist, have my massage, buy a lottery ticket and stop at the food bank.


My Favorite Things

Posted by barefut , 07 December 2009 · 867 views

Listening to my 7 year old sing in the shower.

A good cup of coffee.

Snuggling on the couch with my boys.


The sight of my 12 year old and his dog, snuggling and fast asleep on the living room floor.

A clean house.

Cooking, coloring or puzzles with my boys.

My mountains.

Sitting in my recliner at the end of the day and looking at my boys' school work and art work.

Good hair days.

My Lake.

Getting into the car in the morning after I cleaned it the day before.

My boys getting along.

Summer road trips.

My beach.

Family, Friends and Food.


Med Wars

Posted by barefut , 07 December 2009 · 845 views

This one gives me temporary pain free mobility and a bit of endurance but also irritability, sleepless nights and weight gain, not to mention silent other evils.

That one helps keep my fingers and toes from falling off but gives me dizziness, nausea and low blood pressure.

This one keeps me from digesting my esophagus but may be the culprit of my irritable bowel.

That one helps keep my body from attacking itself in countless ways but may also be the irritable bowel bandit.

This one actually does a good job on the pain and counteracts the irritable bowel - but in the way of constipation.

And the new one on its way is also supposed to keep my body from attacking itself but takes a month or two to kick in and may come with nausea and a host of other annoyances.

And this pretty one is supposed to help me to endure it all with a smile on my face but may actually do the opposite.


I Used To...

Posted by barefut , 06 December 2009 · 869 views

In spring I used to plant a vegetable garden, and sweet peas and a pumpkin patch.

In summer I used to mow along the road and keep the blackberry bushes at bay and water my grass and flowers.

In fall I used to put away the patio chair cushions and hammock and prune my rose bush and rake the leaves.

In winter I used to feed the birds and watch them from my kitchen window, and decorate for the holiday with colorful lights and bake cookies from scratch.


A Poem

Posted by barefut , 24 November 2009 · 832 views

So much going on
And big stuff too
Don't know where to begin
Don't know what to do

Ready for changes
Something's gotta give
Walking these edges
Is no way to live

My head is aching,
No, splitting in two
What have I done?
What can I do?

How can I know
If my decisions are good?
How can I make
Myself understood?

A peek to the future
Would be so kind
Is it too much to ask
For some peace of mind?

Search My Blog