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!
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.
You can tell it's March -- Things flying about the yard, yep! there goes a Chicken, not entirely the direction it was heading but when the wind took hold it ended up right in the middle of the field. Today has got to be compared to a mild hurricane. It almost blew me over and the gust took me up the yard the fastest I'd gone for years!
I was glad to be home and watch stuff through the window. Stuff like twigs, chickens, an old plastic bag and the old gander trying to stand proud and looking like a fool next to the nest where his missus is sitting on a nest being battered by a force 10. Raynauds in full bloom I see, time for a hot drink!
Wondering what to make the tribe for dinner? We had pancakes yesterday, an age old tradition. It was like a scene from "Oliver", both my hubby and daughter standing by he stove waiting for the next cake. Trouble is, I'd no sooner flipped the last pancake when the next plate was shoved under my nose to fill. Production line or fast food take away comes to mind.
Also it's official my hubby has gout! No more beer or foods which aggravate the condition. I could hardly tolerate the sulk last night. No Beans, Brocolli, Cauliflower, Lentils, nothing that's bad for you, and he sulks! I could understand if it was chocolate. No it's the beer bit that's got him sulking. He's not a heavy drinker, far from that in fact! But he likes a tipple when we go out, now he'll get to sample my life without alcohol. I would love to be able to hand the car keys to him in an inebriated condition but that ain't ever going to happen!
I went to the hairdressers last week. My hair was everywhere but in place. It had grown so much since December. I decided in order to keep the style longer I'd have a good old crop. I was taken back though when in the mirror I saw my ears being revealed for the first time in years. I asked the stylist a question which made her walk away laughing and in need of a steady hand.
"Wow, look at the size of my ears -- Is it true they grow much bigger as you get older --- they're not ears they're flaps"
I finally left with my huge ears and that pretty much dominated the rest of the day. It was certainly the topic of conversation in our home for the rest of the evening until my hubby came in with a wooly bob hat. "Here wear that then!" My daughter thought it was hilarious and before you get to wonder if I've actually worn it, well, I haven't and I'm not going to!
I've got used to my ears now and perhaps they are in proportion after all. I've lost so much weight in recent years that my head has probably shrunk. Well you can't have everything can you?
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
Today is what I call one of the first days of Spring! Glorious sunshine from a big round thing that is quite a stranger to these lands of late. It was a pleasure to come home and enjoy a degree of warmth on my starved skin.
I pulled up to the gate to a welcome party of feathered friends who crowed,squalked and flapped at my arrival and then out of nowhere the Gander came charging down the drive with neck outstretched and hissing! I was just about to kick out my leg when a guy stopped me to ask if there were any goose eggs for sale?
"Ask him?" I said "if you can get near the nest, I'll give them to you!" No surprise then when he declined, mounted his cycle and went merrily on his way.
I'd been out of the house since eight thirty ths morning, doing my little show on the radio. I'd had my flll of Lady Ga Ga, Tinie Tempah, and Dizzy Rascal -- if yo don't know the artists, join the club, neither did I until 12 months ago. My era has to be the eighties and I like to sneak one or two of them in here and there to the disapproving glare of the boss.
I recall and cringe at one incident not long ago when a drink of extremely fizzy soda produced an extraordinary loud belch on air in the middle of a sentence -- I've never quite got over that and never has it been forgotten! It's had more plays than the Beatles -- now there's something that we might all agree was music, or perhaps not if you are under 50?
Three things you must not keep repeating on radio -- Yeah! Okay! and Mmmmm! I'm guilty of all 3 and more besides. It's a far cry from the world of hospitals where all you get to say is "What, Why, and When?"
We have to keep the TV on in the studio - "Why?" I hear you ask? In case the queen dies of course! I remember asking that question myself when the boss came in and scorned me for not switching it on --"The queen might die?" he said and I replied "What! just because I haven't put the TV on?" It's true that we'd probably be the last to know and at the risk of playing something unsuitable, we have to keep up with the news! I could hardly play out "killer Queen, by Queen could I if the unthinkable happened! So much protocol and things you would never give a second thought about!
Back to reality and the nesting geese, ever hungry chickens and the great hole in the wall! I'm so used to that now, it's like having a live mural on the wall, it seems such a shame to brick it up now!
So a taste of Spring -- thank goodness. I hope winter has finally left the shores?
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.
I'd completely forgotten what it was like to have a whole week away from work -- well if you can call it that! Since taking a voluntary role at the Radio station my life has gone from four walls, well three actually. Did I mention we never did complete the gable end and we still have panoramic views from my stairway? Yes it's true that we survived two of the worst winter's on British record with a hole as big as a tunnel entrance, facing North too I might add! The geese walk in and out, so do the chickens and until recently the goats loved to make an appearance too.
My hubby has gout and my daughter is 20 years of age. We have a cat, 17 geese 12 chickens and just 2 goats. There were originally 5 but one was stolen and 2 unfortunately died of old age. My poor hubby then had the unfortunate job of disposing of the bodies and I drew the line at putting them in the trash can! It's amazing but when one of the geese died, he stuffed it in the bin with legs straight up lifting the lid. I was horrified when the Refuse Wagon came and refused to take it because it wasn't in the recycling bin -- How on earth do you recycle a goose?
Life is pretty much the same as except I'm a bit of a local celeb. My voice on the radio every weekday morning and now Marketing Director. I don't know quite how I got there but I did and that is that!
I still suffer badly with Raynaud's and haven't ate a proper meal in 7 years. The odd piece of chocolate, perhaps a solitary biscuit and that's me sorted for a whole day. Still it has it's rewards. I've never had such trendy clothes, it's like being the younger sister who receives hand-me-downs from big sis! Although in this instance it's my daughter who goes through fashion faster than corn through the goose!
I turned 50 in July, a milestone for most -- an absolute miracle for me! There were times when I thought I'd never see another birthday let alone reach 50! and now it seems like I'm talking about another person, was I really that ill? Certainly no one knew the extent of my demise from a well rounded individual to an almost anorexic wreck who couldn't swallow a grain of rice....
Can I just say at this point "Thank goodness I still have my own teeth!"
I guess I've brought you up to date with circumstance but not up to speed with my very full and eventful life -- it will take some time to go through it and if you bear with me I'll try and write as often as I can to bring you somewhere up to date.
Since I last wrote - computers have moved on so much. Smaller keys and stumpy awkward fingers don't match. I may have the odd missing word and I apologise in advance but just fill in the gaps won't you ...
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.
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!!!!
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!
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’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.
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.
Another day at the Radio Station, my these weeks are flying by! It was kind of a hard day today since I got up too quickly this morning, treading on the cat downstairs, then stubbing my toe on the table leg. My hubby was dishing out daily instructions but to be honest it went in one ear and out the next!
My daughter emerged from the dark room where no one ever goes, looking somewhat similar to how I felt and the first word from her lips was "Mum can you make me a drink?" The second sentence went something like this "Can you pick me up tonight?"
I pulled on my Chorley FM T Shirt just as hubby sped off to work but by this time I was feeling nauseous which is an irritating side affect of jumping out of bed with all systems 'Go'
My second job of Wife, Mother and Head Cook and Bottle Washer was the personal chauffeur service for my daughter -- and I make that 6 jobs in total. She did begin to take driving lessons but decided she didn't like it, or more to the truth it was cheaper by far to ask Mum and Dad to provide a suitable mode of transport.
Finally sitting in the presenter's chair at 9am, I quickly looked through the log and first song on the list was "Get me Outa Here" I felt more like playing a relaxing mellow tune to ease me into the day but it played and I scribbled requests from listeners on my little note pad. Red light on and away I went, can't remember my first words this morning - it's a bit of a blur.
I watched the hours fly by until it was time for me to sign off. I headed home to find my hubby eating french fries on the lawn wrapped in newspaper, and trying to hide them from the chickens, which were all gathered hoping for at least one chip!
"Good Day??" He asked
"Naahh!" I replied. "felt a bit rough around the edges today."
"Oh very good" He said not really listening. I was so glad to be home. I just needed 5 minutes to myself to recuperate. Life can be a bit hectic sometimes? Just call me Six Jobs!
Seems so strange finally being here and able to type into the forum. I've been a stranger in these parts for far too long and I've dearly missed having a moan or a titter to those who share a common bond, although Scleroderma has become somewhat of a stranger to me these past months and I guess that's something to be glad about.
I no longer have the time to think about what the future holds. My day at the radio station is full of current news and interesting folk passing through. Sound checks, music logs and mixing are a huge part of my life at the moment and pressing 50 years of age next month! Who said you can't teach an old dog new tricks?
My morning coffee interview which I conduct always at 11 has made me realise that there are other people out there with huge problems. Being part of a Community Station I brush with charitable organisations and wonderfully brave individuals who all come into the studio and have a chat about their life with me. You sometimes forget that other people suffer too and my own illness is really quite trivial compared to the poor person sat in front of me!
The music plays and I relax into my big presenter chair. "It's really hot in here Babs" Say's the following presenter! "How can you sit there in a jumper without breaking sweat"
It's true that whilst I'm just alright, other's are wilting and opening windows for air which I instantly close just as soon as they leave.
My winter of discontent was held in that very room. I've never been so comfortably warm, yet feeling so mixed up. My Father had just passed away and I had to speak into a microphone like I'd won the lottery, nothing felt the same I was feeling alone and so lost in fact it seemed like nothing mattered anymore -- was I doing this job for myself or trying to impress. My own health faltered a little. I'd suddenly lost interest in being ill and with it several missed appointments at the hospital, always with an excuse and not having the will to look after myself.
The long hard winter of 2009 further depressed me but I kept plodding on and arriving at the radio station every day. Slowly I began to dig myself out of a rut and after a little dusting down my spirit returned, only much stronger than before and I rose up above all the blackness that seemed to surround me after Dad's funeral. Suddenly I had a family again, my life had also turned around -- hello to the world!
Radio Star, TV Star it all makes sense now, my destiny was probably just waiting round the corner and when I turned it, it hit me full throttle!
Glad to be back, twice the woman I was but only half the size.
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.
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:
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?
Not sure if this will appear on the blog site but here goes!..... My absence, although caused by personal issues, was not entirely due to my lack of availability, oh no! my ISP saw to that. I've been blocked out since October last year. So here is my rather long and tedious blog that you've probably all been waiting for?
I'll begin with today, Mother's Day in the UK. I was up and fully dressed by 7am. My hubby was off to work and my car was blocking his in the yard. I'd bought daffodils more than 10 of them, a rare flower it seems after the long hard winter of 2009. A visit to the church yard was on the cards this morning.
Quiet cold yet peaceful places are the grounds around our little church. I noticed Snowdrops, Crocus all growing in a sea of colour and birds singing in the trees, although still bare and eerie! The old church clock chimed on the half hour as I walked the stoney path choking back the tears with each step. I wasn't just visiting my Mum but my Dad as well! My dad passed away in November and although I'm brave on the outside, I'm very much falling apart within.
I'd been very close to my Dad. I'm an only child and in his twilight years we'd grown especially close. I moaned sometimes at his constant demands for attention -- my life was so busy with the radio station that sometimes it's true that I thought he was being unfair. His illness was much worse than my own, leastways that's how it seemed and towards the end I have to admit that my patience was wearing thin.
I'm wrecked with guilt now. I should never have got so angry with him and all the times I made excuses not to see him on some day's, I wish I could have those back! All the telephone calls he made throughout the day drove me to the edge of despair one call after another. I wish the phone would ring once more time with his voice -- oh to hear him speak to me again!
So with the flowers held in hand I walked up to the grave with a lump in my throat so big I thought I would choke. "Hi Mum, Hi Dad" I crouched by the graveside trying to utter words but nothing came out. My tears dripped onto the soil and I just blurted out "I love you both"
I spent a few moments just thinking about the times we had together as I placed each flower in the pot. I began to whisper, "Everyone's okay Dad -- Steph's away for the weekend and she finally got rid of that boy" That's another story!
"I'm growing tomatoes again, in the greenhouse and look at my fingers Dad!" Every digit was frozen and dead. I could almost hear him saying "Get home love."
I cried all the way home, just when I think I'm doing well -- I'm really not! Life goes on I know. I'll hit the age of 50 this year, so why am I so cut up about losing my parents. I guess you are always the child until they leave this earth and then suddenly you are the parents.
This has been such a terrible piece of writing and for that I apologize! Give me time and my old silly self will come back to the forum. I guess right now is not the right time!
Thank you for reading!
Much love to all
:emoticons-yes: I'm writing this little rhyme
To see if I get in this time
It's been some while since I was here
So before I start I'll pour a beer!
Bet you thought I'd been real sick
And No! I haven't turned alcoholic
Just my twisted humour I really do not drink
But getting onto the forums has really made me think!
I've had a few problems and "Boy" I've been so busy
It's really no wonder I haven't turned to the fizzy
Doing stuff for the radio and busy being in demand
I've never had the time to spare nothing ever planned
So this is my little test to see if I get through
Perhaps I need a medium, I don't know what else to do?
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*!
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.