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:
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). Doc 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! :(
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!
I am grateful for my good days. You know the ones - when body parts seem to be cooperating or at least not giving you too much grief. You are cheerful, productive, grateful and optimistic! You think, okay what am I doing right today? What did I eat yesterday? Can I repeat everything so I can have these good days all the time? Then BAM! You wake up the next morning and wonder how many cars were on the train that ran over you last night. If you can get out of bed, you can barely move and everything hurts. And if the pain and fatigue itself is not bad enough, you are crabby, helpless, bitter and mad. You don't even want to be around yourself so you know you'd better stay away from friends and family. Ironically, this is the exact time when you need friends and family the most.
And so the story goes day in and day out. You never know when you go to 'sleep' at night (and I use the term 'sleep' lightly - pun intended) how you are going to wake up in the morning. Will you be at the top of the roller coaster full of energy and optimism? Or at the bottom of the roller coaster looking up at the hill you must climb? Psychologically this makes a perfect recipe for bipolar disorder. If your physical pain does not drive you crazy the emotional highs and lows surely will.
Subsequently, I find that on my good days I am probably overly cheerful, grateful and optimistic (nobody wants to be around that either) so I tend to think I can conquer the world. Play catch up for all of my down days and solve the world's economic crisis at the same time. Then, you guessed it - crash and burn.
Finding balance is especially hard when dealing with chronic illness. Our highs are higher and our lows are lower than your average healthy person. Pacing ourselves is crucial to finding balance. As well as paying very close attention to our bodies and our moods.
It is recommended and I know a lot of us do keep a health journal. Writing down what we eat, how we feel and what our day consisted of can be a helpful tool in learning how to pace yourself as well as find balance. This doesn't have to be time consuming. It can be as simple as using a calender to assign each day a mood and/or pain marker on a scale of 1 - 10. Keeping a separate food diary where you record what you eat and time of day can also bring insight into what makes us feel better or worse.
Paying close attention to our bodies is especially important. With chronic illness, we tend to ignore so much. It's innate; I think it's a survival mechanism. We don't want to be constantly focusing on every single body part that squeaks but I think we do need to set aside some time in our days to sit still, be quiet, close our eyes and take inventory of what is going on in our bodies. Write it down and then move on. When I have done this and then gone back and read past entries I have been surprised by a lot of what I wrote because I had forgotten about this or that - these being recurring things that are worth mentioning to my doctor.
We also have to give ourselves a break. Not only physical breaks but mental/emotional breaks. First of all NOBODY is perfect even healthy people, so if your house isn't as clean as you'd like it (my hurdle) or you have to give up some things and/or give in to others, tell yourself it's OKAY. Just don't fall into the trap of doing it all the time and becoming truly lazy. We can give ourselves breaks but we also have to know when to get up and PUSH! Think of PUSH as Persevering Under Sorry Health and ask yourself, "Can I PUSH today? Or do I need to lay low?"
One last thing - chronic illness and depression go hand in hand. Be aware of the signs of depression. These include: prolonged sadness, apathy, social isolation, lack of motivation, and a feeling of hopelessness. Please don't be afraid to ask your doctor for help. You deserve to feel better.
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.
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.
Six years ago today I learned of my Diffuse Systemic Scleroderma diagnosis. I have come a long way since then thanks to all of the wonderful people I have met here on ISN.
It's been said hundreds, maybe thousands of times by hundreds, maybe thousands of people, what a great place ISN is to find support from the most sincere, kind, compassionate people in the world. Not to mention the best place to find the most abundant, up to date, reliable information on such an obscure, and confusing disease.
Besides information, ISN and all of it's members and staff have brought me tears of compassion, joy and laughter, peace of mind, confidence, and hope. And enabled me to focus on living my life to it's fullest no matter what obstacles scleroderma throws in my path.
Knowing I am not alone in battling this disease is a blessing and I thank each and every one of you for being brave enough to share your stories and your struggles with us all so that we all may learn from, and gain strength from each other.
I take a moment and remember our friends lost to scleroderma and am thankful to have known them, to have been comforted by them, to have learned from them. Beautiful souls.
Best wishes to you all in 2012 for a year full of good health, prosperity and abundant peace, joy and love!
I've got to say that even though I am not blogging much lately, I am still always thinking of my friends here. I've been feeling writer's block. Not sure what anyone wants to listen to from me - ha! Anyway, I figured I'd at least check in and fill you in on what I've been up to lately.
I have put 2 of my passions to good use in a new home business which I launched last October. I am using my nature photography to make greeting cards and my love of sea glass to make jewelry. I also incorporate my love of all things 'beachy' into making other crafts as well, such as picture frames, driftwood signs, ornaments and bath salts. I am having a lot of fun with it and learning a lot about being a small business owner along the way. I welcome your crafty ideas as well as any business tips and advice!
It is good for me to be able to work from home, be my own boss and make my own hours. Now if I could just make some big money! My family and friends have been so supportive and encouraging, both with their purchases and their kind words. I am truly blessed! I have to say that it is so very nice, therapeutic even, to be able to go into my craft room and zone out on the rest of the world and just spend a few hours focusing on what makes ME happy. It is a great escape as well as a good distraction from all that ails me. The BEST part of my new job though is combing the beach for sea glass. That is my happy place - where I meditate and it is good for my soul.
I am still working on fine tuning my website and getting the online store launched. Also, it is my goal to have my jewelry in our local shops downtown before the tourist season hits, which is getting close! I also hope to be able to make enough money to purchase some greeting card racks and get my cards into local shops too. I'm learning it takes money to make money! I am impatient. Like the bumper sticker I saw, "I want it all and I want it now and I want it delivered!"
Other news, it's baseball season! Now if only the weather knew that! Both boys are playing Little League this year. My oldest (14) took last year off. I am glad he is back in the swing. I was somehow wrangled into being the Fundraising Coordinator this year. I'm pretty sure the outgoing coordinator waited until I had a glass of wine in me at last year's Spaghetti Feed Fundraiser and then pounced with her request for me to take over. "SURE!" I heard myself say. She was SO grateful it scared me. I have 33 cases of 3 different kinds of candy bars being delivered to my house on Friday! That's 197 boxes for a total of 4,728 candy bars! Each box comes with one kind in it and needs to be reorganized so that there are 3 different kinds in each. That should take care of the Spring Break activities next week! I have to distribute the sorted boxes at the Jamboree on April 7th.
That's all for now.
Stay Healthy, Happy, Safe and Warm!
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!!!!
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*!
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.
Well, baseball season ended with my youngest as starting pitcher for the 9 - 10 All Stars. He pitched a no hitter! This proud and shameless momma had to send her best pic to the newspapers ^_^ We beat our rivals in that game 12 - 2. We lost our next 2 games and this ended our season.
My 14 year old ended their season 9 and 2. They didn't have enough players to compete in All Stars as everyone went on vacation.Speaking of vacation.....My youngest didn't want to go to camp this year so instead of getting a week of solitude at the most beautiful lake on earth, I am struggling to find a place for him to stay for 2 days and one night so I can get away. My oldest has been practically living at a friend's house all summer - I felt so guilty I bought them some groceries.
Anyone want to buy a candy bar? I over-ordered and am stuck with 6 cases! I feel horrible but people kept telling me they needed more and could sell X amount...by the time the candy got here everyone was done. There are also STILL a hand full of people who have not turned in their money! This makes me mad and stresses me out!! Looks like I'll be selling candy all year.
Football season begins for my 10 year old next Monday. It seems I define my seasons by sports - you certainly can't define them by the weather around here! This has been the worst "summer" for weather here in the Pacific Northwest that I can ever remember. Anyway, Henry is so excited - is it possible for a kid to be addicted to sports? He lives and breathes athletics, works out every day and tells me what is not healthy to eat. Most kids his age are watching cartoons, he watches Sports Center, CONSTANTLY! I love it.
My oldest begins high school in a month! I truly cannot believe I have a highschooler. He does not want to play football this year. Those seniors are big! He is interested in photography, like his mom, and woodworking, like his G'paw.
And speaking of G'paw.....His house is complete! He is all moved in to his new home on my sister's hobby farm property just 15 a minute drive from us. Sister and brother-in-law finally sold their home and will be building their new house next spring.
Me? I have not put as much time and energy into my new business as I had hoped I would have by now. I discovered that our local Friday Market is not worth my time and energy and the big Farmer's Market is not accepting 'artists'. We have a new community owned mercantile opening in September and I went to their 'show and tell' day. The buyers seemed genuinely interested in my photo greeting cards and now I am just waiting for a call. I also have not been out on the beach since May!!!
STILL waiting on approval (refuse to even consider a denial) of a mortgage modification. Applied last September! Have had to resubmit paperwork 3 times! SO very frustrated with that and am trying to stay peaceful and breathe.
Speaking of breathe ;).... I went in for a CT with contrast of my lungs back in May. Doctor said they do appear a little worse than last scan but nothing major. I tried to reduce dosages and/or eliminate some of my meds. With my doctor's approval, I went completely off prednisone and quickly found out that is not an option for me. I am back on 5mg/day and still contemplating asking to go back to 10mgs. Most days are still so very, very hard. I also weaned off of my antidepressant and also found out what a mistake that was. I am back.
Right now my biggest struggle (besides being a single mom to a teenager!) is, and always seems to be, the muscle pain and stiffness. While taking photos of my sister's farm for her, the muscles in my legs and hips burned and cramped so badly I had to sit down in the middle of the blueberry field. It took about 20 minutes before I recovered enough to get up. I promised my rheumatologist that I would walk every day - she asked for a mile and I laughed. I see her in September. I wish she could know this pain. After the blueberry patch episode, I will ask for another 5mg of prednisone. I have decided that the benefits are worth the risks of long term prednisone use for me. I have worked hard for many years to keep the dosage as low as possible. I have found that 10mg makes life bearable. And I am done attempting to taper just to see if I can do it - that was stupid.
I have been trying to get back into my more serious writing. I went out of my comfort zone and attempted some fiction - not too bad but not ready to share. I have poetry welling up inside me. It wants to get out but I think I need those days at the lake to pop the cork.
Wishing everyone a pain free day, week, month year.....
Ohhhhhhh my goodness will someone please remind me to never, ever even THINK that I can take my two boys, my eldest's friend and the 7 year old I sometimes babysit on a 45 minute car ride to the next town for shopping - even if it is only to pick up the photo prints I ordered and exchange a gift.
It's only 3:30 pm and I've cracked open a beer for lack of any other sedative in the house. I feel like my head has been through a blender and I really don't know HOW we even got home without an accident. "STOP KICKING MY SEAT!" "STOP CALLING ME A LOSER!" "STOP SPITTING ON ME!" "I'M NOT SPITTING ON YOU!" "YES YOU ARE!" "NO I'M NOT!".........You get the idea.
It would seem to me that 15 year olds would understand the cause and effect logic behind poking a sleeping bear. No different, mind you, than throwing a balled up gum wrapper at a 7 year old in the back seat.
Just when we thought he was settled down....
7 yr. old: "HEEEEEYYYY!!!! WHO THREW THAT AT ME?! THEY'RE THROWING ROCKS AT ME!"
Two 15 yr. olds: "Shhhhhh! You're too loud! You lose the quiet game! Mom, make him be quiet."
47 yr old: "You poked him just to hear him roar so enjoy the fruits of your labor."
7 yr old: "FRUIT?! WHO HAS FRUIT? I WANT SOME FRUIT!"
Don't get me wrong. I LOVE watching that little 7 year old. He is a hoot! Smart, smart, smart and asks A LOT of questions - that's why he's so smart. And he remembers everything you tell him - EVERYTHING! I don't mind answering his endless barrage of questions - most of the time. I told him to never stop asking questions even if a grown up tells him to because that's how you become smart. I regretted that the minute it came out of my mouth and the next second found myself telling him he asks too many questions.
I had to explain the difference between a smart question and a, well, a question that he can answer for himself:
"Ya know kiddo, sometimes if you just go with the flow and wait and see, a lot of your questions will be answered before you even ask them."
7 yr. old: "What do you mean?"
Me: "Just wait..."
So my youngest has gone off to his friend's house and the two 15 year olds are outside shooting hoops and "my" little 7 year old just now comes up and gives me an unsolicited hug for no apparent reason.
"No one realises, even myself sometimes, how much of an impact a chronic disease can have upon a person." - Barb Lowe
I was going to blog about what I had been up to this past month but after reading Barb's blog this morning, I have another agenda.
You said it sister! Sneaky, insidious, scleroderma. I think that should be the official diagnoses - SIS. Barb talked about how she puts on a good show of hiding her visible symptoms. I want to talk about the impact of invisible symptoms. When people don't see anything wrong with you, they can't help but wonder, "What is her problem?" Boy isn't she: a whiner, lazy, helpless, sympathy monger, slob, careless, unproductive, slow learner, stupid, clumsy, forgetful....All things no one wants the reputation of being.
And so we have a choice. We can give up and pretend not to care what others think about us or we can fight against it, (as well as our pain) and try to prove that we are not these things. That we are "normal", that we can 'compete' with the healthy people and also have a nice yard, a clean house, a sharp mind, motivation, ambition, strength, endurance, and have energy left over to help others.
My first choice is the latter and when I exhaust myself from pretending I am 'normal' then I choose to pretend not to care. Pretending has apparently become a way of life and therefore it really does feel like living a lie.
Yet I never really left. I haven't blogged for awhile not because I haven't had anything to blog about but rather the opposite really. Too, too much stuff. Topics swim around in my head as I go about my blurry days. Some of them get jotted down on little scraps of paper and stuffed into my purse/briefcase/lunchbag/first aid kit/pharmacy, only to get thrown out at the weekly purging.
If you looked in my waste basket you would find:
(Just to name a few...)
You know you're lonely when...
My (imaginary) boyfriend
Coaching style or personality defect?
When did 12 become the new 18?
Get your own husband
I'm a dork
I'd love to elaborate on just one of these tonight but that muscle relaxer is finally kicking in and although the headache from my twisted neck is subsiding, now I must choose sleep before sleep chooses me.
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.
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.
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. :emoticon-dont-know:
I followed directions well - folding a piece of paper in 1/2 and placing it on her desk. :woohoo:
In the end they said they will recommend that I get SSI and ASAP! :emoticons-line-dance:
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.
My sister shared with me The Eyeliner Rule. Back when they were in college she and her friend made the rule that, no matter how lazy they were or how bad they felt, they are to never ever go a day without at least applying eyeliner. I must have been letting myself go.
"If you look good you feel good" she said. Well.....okay...? She obviously has never walked a day in my shoes. I could look like Farrah Fawcet and still feel terrible. But I tried The Eyeliner Rule anyway. It took little effort and it did make me look a little more lively. I had stopped wearing makeup when I quit working at the bank. It's been 2 years now. One less thing to do in the morning when my hands don't work anyway and I have no one to impress.
One day my 9 year old son came home from school and said, "Mom, did you know it takes 21 days to make a good habit?" I must have surpassed the 21 day mark because I had been faithfully applying my eyeliner even on my darkest days. Once in awhile I'd throw on some blush too.
If there is one thing I am consistent at, it's being inconsistent. That is why I surprised myself with The Eyeliner Rule. What other things might I be able to accomplish if I applied The Eyeliner Rule to them?
For six years I had a "probable lupus" diagnosis. I never could get used to the word lupus. I just don't like the way it sounds: Looo Pus. Lew pus. So I just never used it. Then, good news! I found out I didn't have lupus! Bad news. I had diffuse systemic scleroderma. Slcero-what? Sounds yukky and contagious. Ten times worse sounding than lupus. And the diffuse, systemic part didn't sound so great either. You know, the more words they add to your disease, the worse it is.
My diagnosis came on January 2, 2006. Funny how I remember the exact date like it was the day of some kind of disaster.
It took me over a year to own scleroderma. I couldn't even say out loud, "I have scleroderma." It sounded so definite and final. I tried it backwards, "Scleroderma has me." The best I could do was, "I have been diagnosed with scleroderma," as if maybe there was a chance that the doctors and lab techs made a mistake. After all, my lupus diagnosis was a mistake.
There was no mistake. Turns out my lupus diagnosis was just scleroderma in progress. Now how was I going to deal with this? First, educate myself, right? Wrong! Everything I read scared me to......pieces. I felt I was given a death sentence and I could have 3-5, maybe 10 years and there was no way to know.
Here I was, a stay-at-home mom to my two precious boys; in a bad marriage that I was gearing up to end; and in the process of applying to graduate school to earn my masters in Early Childhood Education. I was optimistic about my future for the first time in almost 10 years. I was ready to begin a new, happy, stress-free life full of promise. Then the rug was yanked out from under me and I landed in a broken heap.
My mind raced with, "What am I going to do?!" My first concern was for my boys. Who would take care of them? What would their little lives be like without their mommy? What kind of people would they turn out to be without proper moral guidance?
Then I felt like I had to scramble to get my affairs in order. I had no life insurance. How would I get any now?! Where were my old journals? Was there anything in them I didn't want left behind?
I threw out my completed financial aid and graduate school applications. How could I possibly think about that now?
I became hyper-sensitive, superstitious even, to silly, meaningless things. I could no longer watch my favorite hospital show on TV because people were dying. In one episode, a little boy lost his mom. I couldn't bear it.
Thankfully, I found the International Scleroderma Network Forums and was able to communicate with real people living with various stages, degrees and types of scleroderma and I slowly began to see that, even as serious as diffuse systemic scleroderma is, it is not a death sentence. People were living happy, productive lives in spite of this ugly disease. I learned that there have been great advances in treatments in just the past few years that have given many people new hope.
I have made many new friends on the ISN message board. I wish that I had come here first in trying to educate myself and maybe I could have saved myself a lot of anxiety and grief. With the knowledge and support of all the wonderful people I have met on the sclero forums, I realized that I was still going to have a new, happy life full of promise (notice I left out stress-free) -- it just wasn't going to be the one I had planned.
At least these are what I have experienced, along with an underlying grief that tends to resurface now and then.
In my first blog entry I talked about my diagnosis and my shock. When I was done freaking out, I moved in and out of denial for awhile. I figured as long as my symptoms weren't bothering me too much then I could just pretend that scleroderma didn't exist in me.
And while I was busy in denial, mowing the lawn, weeding the garden, babysitting 5 kids in addition to my own, and generally knocking myself out with housework, laundry, grocery shopping, cooking, and being chauffeur to play dates, sports practices and games, I realized that if I was going to try to keep up at that pace, then I was going to have to ask for help.
Since I was (and still am) not good at asking for help, I had to let some things go, beginning with my yard. It saddens me since I have always loved gardening and enjoy the feeling of a hard day's work and seeing the before and after. I take pride in my home's landscape. Now I had to watch the weeds grow, let my dream projects go and try to not let it bother me.
I have not given up on my gardening. I just do what I can, when I can, and try not to stress about what's always left to do. A garden is never reallly "done" anyway. But here is where that grief comes in. I will always long for the days when my body allowed me to do pretty much whatever I wanted. And I still grieve for the loss of what once was.
I still have a tendency towards denial, or "functional denial" as I like to call it. Sort of a healthy denial if you will, in which I do acknowledge scleroderma; I've taken my doctor's advice on treatment; I have made adjustments in my life to accommodate my limited abilities and I continue to go about my business of living life to its fullest without even thinking about scleroderma for the most part. So, I suppose you could call it acceptance.
Making adjustments was and is hard. Really hard! When you've always been one to do it yourself as well as for others, it's just not in your vocabulary to ask for help. I still have a hard time asking for help and won't unless it's absolutely necessary.
Making adjustments has been a real learning experience. I have had to learn to look at a scrappy yardscape and not care (too much). I have had to learn to be able to relax in a messy house. I have had to learn to not feel guilty for feeding my kids instant oatmeal for dinner two nights in a row and for having to dig dirty socks out of the hamper for them to wear because I just couldn't get around to doing the laundry. (Incidentally I solved this problem by buying more socks. Lots and lots of socks!)
Replacing the word "lazy" with the word "pacing" was helpful. If I was a healthy person, you could call me lazy. Since I have scleroderma, I am pacing myself. Most days I can get up and clean the house for 20 minutes then I need to take a break for 20 minutes. And that's okay. Things take longer to get done and I don't get near as much done as I would like to, or as I used to, but it's just one of those adjustments I've had to make and I accept it gladly in exchange for being able to do it at all.
I also learned that accepting help was almost as hard as asking for help. It does take a bit of pride swallowing and with my esophageal problems.....well you know.
After learning more and more about scleroderma and its tag along friends like Raynaud's, interstitial lung disease, the GI business and more, I decided I was going to take a proactive approach to my treatment and care.
I noticed some loss of range of motion in my hands. I dread losing any function in my hands. So I went to hand therapy as a preventive measure. I learned a lot of great stretching exercises and bought myself a parafin wax bath as well as a small hand massager that helps to keep my joints flexible. I use it on my tight face too and it helps a lot.
Since getting any kind of outdoor exercise in the cold months is aggravating to my Raynaud's, I bought myself a treadmill with the gift money from my dear ol' dad. Now just finding the discipline to get on it regularly is another story. But hey, it was a proactive move!
I also finally started making multi-vitamins, probiotics and glucosamine a regular part of my "pharmaceutical food group" as a fellow sclerodermian in my town refers to her handfulls of daily pills.
Massage is also something I would like to make a regular part of my care but it ain't cheap! Our town has a school of massage and offers student massages 3-4 times/year at a great rate, so I try to hit those.
It feels good taking charge of my body and my care and treatment. I feel empowered and determined to not let scleroderma rule me but for me to rule scleroderma.
I have two very active young boys who need me and too much life left to live to let sclero get the best of me.