My Month of being Grateful

My Daughter's softball coach started writing a daily Grateful for status on Facebook.  Then one of my dear childhood friends sent a wake up call biblical statement:

An unthankful heart discovers no mercies...
a thankful heart ~ finds heavenly blessings :)

So I sat myself down and started my Grateful comments, It was emotional and uplifting to me.  what I didn't think was it was showing to others that my spirit had changed.  I finally got to have a real conversation with my Best Friend Olinda - who happens to know me better than anyone else - she said Wow you sound so much better and accepting.  I said maybe I am - it's amazing how reminding yourself how many wonderful things you have in your life will change your disposition - even when you are in extreme pain and your face looks like a monster.  

Yes, the so called Wolf has made his physical appearance - I have always been annoyed that I would be on extreme pain killers and took me all day just to get dressed and they say Wow, you look Great- so glad to see you are doing so great and getting better blah blah blah.  I know they meant well - but my husband and I would keep walking and say Oh man if they only knew how bad you were - but in the same time I am glad I look Great and no one knows the better.  

Well I jinxed myself - the Wolf as you all call it has reared his ugly head and I have the biggest, ugliest wound on my face.  There is no telling me I look great now.  I don't understand why it got so big - haven't read up on it, but intend to.  I have had red dots on my face that got worse with stress but never looked like an open wound and hurt under the skin all around it.  It has scared my 9 yr old baby girl.  She is afraid she will get this.  She has reassured me that she isn't embarrassed by it- Thank God 

Well I am surrounded by children and a bit distracted -so my mind cannot focus.  

I am hoping those of you that live with the mask help me figure this out - Are there creams, things I should do or use to help it heal - or does it just take time?  Please post comments or friend me on facebook - Tammy C Nash, live in Oregon

I think I will be getting creative - while it is so flared up - maybe learn how to use scarves to cover the face - there is no way I would put makeup on it in this stage. 

So sorry I got off Track - but I suggest to all my Lupus buddies - try the "being Grateful for" Status even if you just write it in a  journal - it has turned my very discouraged and sad, feeling sorry for myself, sick and tired of living like this attitude, right around.  I intend on keeping it going - maybe I could take those status' someday and publish it in a keepsake for my family so they will always remember how much joy they did bring to my life - If I am taken away from them before my time.

Well because it's a holiday weekend - my time alone will be limited so may not be able to post again til Monday - I hope you all found yourself surrounded by Love and Thankfulness - and those of you who don't please reach out - I would Love to help  you through the bumps in the road and in doing so it will help us all. 

Have A Wonderful Weekend~

Not alone anymore -

I am feeling hopeful and grateful to be introduced to others with lupus and other things - without reading back on my post I cannot remember what I wrote - so I am apologizing now if I am redundant.

It is Thanksgiving week and my kids are home from school - which means more messes, more cooking, more disruptions so I cannot concentrate on things like blogging because they just don't stop talking.  But I must admit I like the company - being home all day alone just gets the downers in you - and with the lack of physical ability I cannot keep myself busy enough and there for think of these diseases that keep me down, not to mention make me look like a totally different person.
  Well this Thanksgiving I am fore going the Turkey and doing surf and turf instead - this way I think it will be a bit easier on me and others can help better - I am buying the pie and so many other things -  I realized from a friend that I should teach the kids, and sit with them instead of carry the burden myself.  So I am going to try this more often - today I went to put about 8 towels away in the linen closet and well by the 5th one my arms were screaming at me .. It is a frustrating disease - but from this moment on I am a fighter not a complainer -

On that subject - because I didn't have anyone to talk to that understood - I wld make statements like this or that hurt to do - or I am tired oh geeze the pain everywhere and so on to my friends and family etc.. I started to notice that they no longer responded - they had nothing to say back to me - Why would they , so at that moment I felt like I became the nuisance, the complainer, ugh not another word from her please lady... LOL
So I started to recluse and become grumpy, because I felt all these things constantly, no day off, and no one to really talk to and I just simply didn't want to loose my friends and family because I was no longer the positive, go getter, do everything girl.

I was the mature mother - I was the one to go to for advice because I have been through it all having six children from the ages of 9 to 26 .. I also was a decorator, a gardner, physically fit person, can do wood working, painter, 14 years in the finance and accounting world, well traveled, loved to read and talk about everything, I loved to hold parties, I also was faithful and attended church weekly - until a few years ago all of that slowly was taken away from me.  How do I rebuild myself - when I feel like I am dwindling away to nothing - the things I love doing are simply not achievable.
My promise through this blog and the people I intend upon meeting and growing from - is to be that inspirational person I used to be - it may have to change to suit my physical inabilities - but I think I should and will be able to find a life that will make me feel social, accomplished and blessed again.  I guess that means I have to start seeing the glass half full again and finding joy in the day - because there truly is joy even in the most painful days .. 
Thank you all for helping me lift my head and heart back up - I am blessed and cannot wait to start meeting everyone

signing off now - because this mommy in pain - has a daughter starting her first basketball game today in the 8th grade - and I love watching my children play sports especially basketball.  Today I am grateful to have a friend drive me to the game, and for attending a school conference where the teachers feel a warmth and appreciation to a daughter that is so loved by me - she is holding Straight A's still (always has) her 8 yrs in school, she is lovely, organized, hardworking, pleasant, chatty, fun and very athletic .. I am blessed today - hope you are too~

Oh Really~

Well I buckled and gave in - I have stayed away from my rheumotologist for a year now .. I went yesterday It takes an hour and half to get to OHSU a wonderful Hospital University - Many great doctors there.  But yesterday, caused both my husband and I to raise an eyebrow.  How many doctors just push out their patients like they were checking out groceries.  I went in started to explain how bad my pain has gotten - ie.. stuck in the middle of the mall wondering how I was going to walk back, can't chop vegetables without tears, folding clothes hurt my hands and wrist, driving etc...  Yeah he says - and keeps typing, then I said look at the blisters on my face, What do you think? and my Blue hands? Now I have been in a warm car for an hour and half and waiting in the waiting area at least 20 minutes was not out side at all in a few hours and my hands were still purple.  He glides his chair over and says something - Paul and I looked confused at each other.  I said back so are we dealing with Lupus - it's been a year shouldn't I be getting more blood drawn.  Yeah Yeah - he said that is what I said you will get more blood - we want to see what else Lupus is bringing to the table- You have Reynauds, Fibrolmyalgia, thinking you are Vitamin D deficient amongst other things.  I said ok - He commented that my face is the early stages of the mask.. Yippee -- I guess I will be buying foundation - something I have never worn.  Then he said we must put you back on steroids.  I said NO - No thank you - I cannot put my body through that again - my experience last time was horrific, the swelling was so bad no clothes, rings, shoes etc fit - I looked horrific people said I looked like death wasn't far away - and the pain as they would adjust the meds up and down was so bad - I can honestly say it was worse than giving birth, which I did naturally to 6 children, or having a tube stuck through my ribs into my lunges, or having kidney stones.. shall I go on - Do you get it?  Not to mention you must sign a waiver to take the medicine long term-that is how dangerous it is to you.  I have made the decision to live with my pain and deal with it as it progresses and not take another drug that has the possibility of shortening my life.  I am stubborn and my father's daughter after all.  so wish me good luck, and please if anyone has input as to how Steroids has helped them and not harmed them long term - send me a post.  I would love to hear from those of you who are living it.  Here's to communicating and forming bonds.  Hope to hear from you soon~

No Place to Hide

Yesterday, I had to take my 15 yr old son in for his follow up appointment to see how his lunges are doing.  He is still fighting pneumonia- he was told he made a little progress.  Anyhow while waiting in the reception area I tried to look all put together. No one knew that it took me two hours to get dressed all they saw was a cute outfit and me put together - so I was hiding in plain sight, or so I thought.  I had just had that horrific night that I explained in my last post, and this morning hadn't changed things.  As I began moving around I realized I still hurt and sitting in the chair at the office and trying not to cry was killing me.  A friend, the receptionist, came out to me after about 20 minutes and quietly said I want you to see the doctor.  I was stunned at first- she said Tammy if it's alright with you - I arranged for you to see the doctor with your son.  I said ok-didn't have the strength to say I am OK~
The doctors were all running behind and sitting there isn't easy - by the time he came in I thought I was going to die - He took my son to another room and came back to speak with me.  I cried and explained what my pain is like.  My fingers hurt so bad that while I am sleeping and need to tug the blankets up over me, It hurts - to lie on my side with my arms bent because it hurts my elbows, to sleep with my hands closed hurts, to lie too long on either side hurts my knees, my feet and knees get so cold and stiff, my head and the pressure points along my neck and shoulder ache and I have to adjust myself throughout the night, all of this keeps me from sleeping. 
I know there are many others feeling the same way- how do you go on and get through the day when you have 4 busy children with homework, activities such as basketball practices and games and piano and not to mention all the time the each need to tell you about their day.  I want to be there for all of it with a clear head and I can tell you my head is foggy most days and when they ask do you remember - I most likely do not remember, I am having a hard time keeping things straight and organized. I am forgetting peoples names and it is making me feel awful and incapable of being responsible and trusted.
I need to know if there are things I could be doing to help myself not decline. 
The doctor told me yesterday that I am not to do anything for a few days and just let my body rest - well I am trying but just lying around hurts as much as moving does.  I do have to agree I am very very tired. I stayed in bed till 1030 which I hate to do - I feel like I have wasted half the day - and now it is almost 1230 and still haven't showered - I honestly don't think I can manage a shower today.  I was also told that I should go away without the family and just relax a mini vacation if you will.  I know that would be very difficult on my family - my husband works two jobs and my children need to be everywhere but most important is my 11 year old son he has seizures and with out me around his anxiety just goes through the roof and it is very hard on him.  So I think I will just take advantage of the day while they are in school and hope that is enough rest for me.
I am still hoping to sign in and see a comment from a new friend.  I am looking forward to talking with you - Here's to hoping for a better tomorrow

Tears of pain

I have just come through fighting the last two months to get my children healthy.  My four youngest children all had pneumonia one right after the other.  Me being Mom- I guess was the one to do all the work caring for them while all the other adults got their sleep and kept their distance.. They are all thankfully getting better - today we find out if the last child sick has clear lunges or not.
How this affected me - while I am in constant pain everyday of my life some days are much harder than others and lately this past week to be exact my body is in an extremely bad place.  I hurt so much - I have distanced myself from my family keeping to my own space so I don't get grumpy with anyone due to pure exhaustion.  Last night was tough.
  I found a great website www.webmd.com that showed videos of people living with lupus and  how it affects not only you but the people around you.  I know that your family and friends feel helpless and frustrated - knowing this doesn't make me feel any better.  I wish there were a way to describe the pain and frustration where they just get it. Unfortunately I think no one will get it unless they really want to get it.  watching these videos made me cry - because I heard others who feel exactly the way I feel and watched their loved ones explain how they feel as well.  There was an up side to all of this it could also be taken as a down side.  I choose the up for today - There are people out there living with my  kind of pain that have been enduring it for over 20 years now.  That gives me hope that I too will find the oomph to push through and get to a place of "ok" so I can have the dream of having a much bigger houseful of children and grandchildren to watch grow and love for a long time to come.
But, last night - Oh My God- last night there was no part of my body that didn't scream out to me - I layed in bed in agony - I never slept, just tried to rest, this morning I am ok - for the moment.  It took me two hours to get dressed and that was without a shower.  For those of you who don't know - showers are no longer wonderful feeling instead it hurts to hold my arms up over my head to wash my hair- it is a burden and the cold I feel afterward takes me a while to warm up.  Curling and blow drying hair is also a major job  - putting on mascara all of this has to be done at a relaxing speed - a little at a time.  It is interesting to be experiencing this - for who didn't take a shower for granted - we all look forward to it relaxing us - waking us up - a nice start or finish to the day - Not anymore.
I called my Dad last night - I said Dad I need to find strength again - because right now I am weak - I have a feeling caring for my children took a toll on me - I was running on adrenaline to be there for them and now I have crashed.
I want to find peace within myself. Accept that I have many diseases that are not curable learn to be OK with that.  I am hoping I have others in the same boat that will join my post and together we can find humor, and strength through this process and maybe even be okay sharing a tear when we need to.
Here's to finding support~ Please tell me your out there

Mom of 6 living with chronic pain: Let's talk about it!

Mom of 6 living with chronic pain: Let's talk about it!: I am a Mother of 6 who proudly did it all. I stayed physically fit, exercising, walking riding bikes etc. I did everything from decorating...

Let's talk about it!

I am a Mother of 6 who proudly did it all.  I stayed physically fit, exercising, walking riding bikes etc.  I did everything from decorating my house around the clock, gardening, learning how to put in a brick patio, hang crown molding, painting landscapes - I did finance and accounting for 14 years of my life, but my biggest accomplishment was being a mom.  My children kept me very busy I ran around volunteering in classroom, running them to any and all activities and some of them have proven to be very athletic while others are very artistic.  Wonderful family my children became my life.  My one son was afflicted with seizures at a very young age of 3 - we began letting him go to school attending kindergarten and it was terrible he missed half the year due to seizures and then the next year was worse.  I decided to study the laws and found a way to teach him his curriculum at home and get him in for resources and other things in the afternoon this helped him soar - granted he is still very behind but is more confident.  My family has grown to be the ideal family - why sure the kids fight like any other set of siblings but when it is necessary they stand strong by each others side and help them through their rough patches.  I am proud of them, of the people they have become.  Let me tell you I know I am a good mom, not a push over, I stand strong and expect a lot from my children and they know it - Our love in this family runs deep and for that I am most proud. 
So with all this to do 7 years ago this fall I fell ill - very scary ill - I couldn't eat or drink anything, in the first two weeks I lost 27 lbs.  My closest friends took turns bringing me all sorts of things that have been pureed into soups or smoothies, driven me to the doctors etc .. it took 6 months and many many test to find out I had gastroparesis.  This is when the fight began.  I tried every medicine available to me here in the US and some from Canada, nothing helped me get through the pain of eating.  Finally I learned to eat at the end of the day and let the pain settle into me while I tried to sleep - I needed to take pain killers and other meds that would help with the mobility of my stomach. 
This all seemed to have been working - it certainly didn't hold me back or stop me from continuing on my crazy schedule. The one thing that I could no longer do was exercise to loose weight now I was doing the opposite trying to hold on to weight.
Well that was fall of 2004.  Summer, more specifically June 2009, the month of my daughters wedding I fell ill with pneumonia, no big deal.  I spent 2 days in the hospital the doctor let me out two hours before her wedding-it all worked out.  Well in the next month I pushed my body to it's limits helping my husband with his new business.  Oh I did forget to mention the same time I was preparing my daughters wedding, I was also up many many nights painting walls, artwork, redoing floors and staining shelving for the grand opening of my husbands store.  Well the work continued on for the store and one day while preparing for a tv interview I fell, completely unable to hold myself up in my bathroom.  I phone my dear friend Karen and asked: should I have a fever of 103 if I am on a strong antibiotic- that was all I needed to say she rushed me to the hospital.  I don't remember the first five days in the hospital - I have seen photographs of my six children sitting around my bedside - attempting to make funny faces on me with a permanent marker and laughing about all sorts of things. (these are my little gems..lol)
They biopsied my lunges looking for everything they told me they took over 2 dozen biopsies.  My lunges were shriveled up dried prunes, one wonders how that could be I listened and relaxed a few days on the couch and took my antibiotics.  Well my body failed - my immune system shut down, my husband told me I looked like a tree someone forgot to water and once they realized it the tree had turned all grey and weak.  The doctor had made a horrible comment, saying "if the steroids don't save her there will be a funeral"  No kidding.  Anyhow the steroids I guess saved me and a short while after getting home after a 16 day stay at the hospital half of it in ICU - I seemed to be feeling better - as time went on the steroids were doing weird things to me - that are common while on steroids - my joints swelled up - heck my face swelled up you couldn't even recognize me.  Steroids and pain killers and all sorts of other meds were entering my body and I no longer was the STRONG MOM who could do anything - I couldn't drive, I couldn't stay awake, I could hardly move, I wasn't interesting in any more pain and didn't eat.  I hated who I was and it didn't get better - I had to use a wheelchair on some days when the body just fought back and I had to give into it's weakness. I was humiliated, shut down - the whole town had things to say - like you look good, glad to see you up and around,wow you must be feeling great  or the complete lets just ignore her and we won't have to listen to it.  I am a straight shooter - If someone asks how are you feeling and I feel like Yuck I say not so good, If I am feeling great you will here Great~ However with this disease I can tell you with certainty I haven't had a good day in years.  I forgot to tell you - after many doctors visits and over two years later these are the diseases I have:  Gastroparesis - have pacemaker put in Dec 2010
                          Lupus, although they would rather call it unidentified auto immune - but I take lupus meds
                          Fibromyalgia - a PA in rheumotology claims I don't have a severe case I agree more joint than muscle pain for me.
                          Raynauds an auto immune which keeps me cold my hands feet will literally turn purple
                          Nutcracker esophogus - this is a strange one - I had my heart checked arteries and all because I had heart attack like symptoms for years - the GI doctor who is a genius up in Portland who placed my pacemaker did a swallow test that shows my esophogus squeezes very hard and causes extreme chest pain and shortness of breath just from talking too much .. crazy

Here is the deal -  I no longer can enjoy a few hours of shopping extreme pain on my knees ankles back etc etc .. I can no longer sit in the bleachers at a game without suffering from pain in my joints things lock up get so tight it's hard to get out of there - I just take a deep breath smile and "grin and bear it" as to fake out the town.  I can no longer drive long distances - my fingers hurt - chop vegetables roll cookies nope - typing this blog is causing issues I just stop and rub   I have a need to reach out to someone - people who get what living in pain is all about - I think when I post I feel terrible on facebook or to someones face - I hear in my head there goes the whiner again - and it deepens and becomes more apparent when there isn't a response back not even from your friends. 

This weekend I asked if I could fall back on my husband - I told him I needed a soft spot to fall when I felt beaten he just grunted and fell to sleep .  I am alone in a painful world - wanting to be better than I am - I want to be the greatest Mom to my children the Best friend to my Friends and the only way I know how is to express myself and hopefully reach others who feel the same way . Maybe together we can feel Whole and Significant again ... Send me a Post - Here's to chatting with a world of people who get it ... or even to ones who are trying to get the other sides perspective .. Lets shine our light again.
Come on Let's talk about it~