She can not win!

My heart is so broken today.  Martha's friend cancer has made a possible appearance.  They found a mass in my lung that has attached to my aorta and esophagus....How is this possible?  How can this be?  I am so broken today with the thoughts of what could happen that for a moment or few hours I didn't think of no matter what, God has got this totally under control and I can  not let fear or anxiety creep in.  I must stay glued together!! I will not leave my children or my husband!! I will NOT!  This possible malignancy is just someone's opinion, its not a fact yet....right?  so. I'm fine right? I have cried so hard today that my chest wall is sore.  my head may explode and my heart stop beating.  This is not an ok day.  Tomorrow I will be fresh and ready to come up with a plan with my oncologist.  Today I will stay numb. 

The other side of Martha, her friend Cancer

Good Morning, 

I'm sitting here on my couch listening to Jesus Culture to prepare me for today,  Today I face Martha's best friend, cancer.  When my blood work came back a few weeks ago saying that my counts are showing signs again I allowed myself 24 hours of the grief, tears, fear, anger and then I came back and realized  its ok to feel these things, but  get back up and realizing these feelings are what Satan is going to use to keep me down. (This is also my second time going through this cancer thing and it was tumors, but of a different disease, no cancer) I turned and are using these feelings to claim no cancer in my body.  So for the last 2 weeks or so that's what I have done.  Today, at 1, when I get these scans to "find the cancer"  I will be waiting for the doctors to tell me they found nothing.  I have to keep that faith.  I have to keep that attitude.  I tend to retreat into my safe little box where we and Jesus eat cookies and chocolate milk pretending all things are good...ok who am I kidding, I got my bottle of wine and Jesus just sits there shaking his head but I digress as I will probably visit my box until the results come in  I am confident that no matter the outcome it will all be ok because through this I have found my faith again and what it truly  means to me.  I am a child of God, with these last 2 years of my body declining God has helped me laugh through it,   through the pain, through the weakness I feel all day everyday I still get up, I'm still actively a wife and mother, I also have to most precious little's I watch everyday that keep me alive.  So Martha, you have me today , and I know I will be emotional as I lay in that machine today but my tears will be focused on how great my life is and how you have not ruined it but have enriched it, you have made me stronger, you have made me appreciate all things so.....Thank you  oh. and I still hate you, I will kill you.  You do not have me!  I have you and you will die.

I ask for my praying friends that you help me at 1 today to stay strong and claim a healthy report.

Thank you

Good Morning my friends,

I see a lot of people read my posts about my disease of Martha,  how do I set my comments so you can reply to them?  my email is

hlbjones_soccermom@yahoo.com

Thank you

Who Martha is....

Symptoms and causes

By Mayo Clinic Staff

Print

Symptoms

The most common signs and symptoms of dermatomyositis include:

• Skin changes. A violet-colored or dusky red rash develops, most commonly on your face and eyelids and on knuckles, elbows, knees, chest and back. The rash, which can be itchy and painful, is often the first sign of dermatomyositis.
• Muscle weakness. Progressive muscle weakness involves the muscles closest to the trunk, such as those in your hips, thighs, shoulders, upper arms and neck. The weakness affects both the left and right sides of your body, and tends to gradually worsen.

When to see a doctor

Seek medical attention if you develop muscle weakness or an unexplained rash.

Causes

The cause of dermatomyositis is unknown, but the disease has much in common with autoimmune disorders, in which your immune system mistakenly attacks your body tissues.

Small blood vessels in muscular tissue are particularly affected in dermatomyositis. Inflammatory cells surround the blood vessels and eventually lead to destruction of muscle fibers.

Complications

Possible complications of dermatomyositis include:

• Difficulty swallowing. If the muscles in your esophagus are affected, you can have problems swallowing (dysphagia), which can cause weight loss and malnutrition.
• Aspiration pneumonia. Difficulty swallowing can also cause you to breathe food or liquids, including saliva, into your lungs (aspiration).
• Breathing problems. If the condition affects your chest muscles, you might have breathing problems, such as shortness of breath.
• Calcium deposits. These can occur in your muscles, skin and connective tissues (calcinosis) as the disease progresses. These deposits are more common in children with dermatomyositis and develop earlier in the course of the disease.

Associated conditions

Dermatomyositis may cause other conditions or put you at higher risk of developing them, including:

• Raynaud's phenomenon. This condition causes your fingers, toes, cheeks, nose and ears to turn pale when exposed to cold temperatures.
• Other connective tissue diseases. Other conditions, such as lupus, rheumatoid arthritis, scleroderma and Sjogren's syndrome, can occur with dermatomyositis (overlap syndromes).
• Cardiovascular disease. Dermatomyositis can cause heart muscle inflammation (myocarditis). In a small number of people who have dermatomyositis, congestive heart failure and heart arrhythmias develop.
• Lung disease. Interstitial lung disease can occur with dermatomyositis. Interstitial lung disease refers to a group of disorders that cause scarring (fibrosis) of lung tissue, making the lungs stiff and inelastic. Signs and symptoms include a dry cough and shortness of breath.
• Cancer. Dermatomyositis in adults has been linked to an increased likelihood of developing cancer, particularly of the cervix, lungs, pancreas, breasts, ovaries and gastrointestinal tract. Risk of cancer increases with age, although it appears to level off three years or so after a diagnosis of dermatomyositis. Dermatomyositis can also develop after you receive a diagnosis of cancer.
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   Dermatomyositis - An Overview

  1. 1. Dermatomyositis - An Overview Dermatomyositis is an uncommon inflammatory disease characterized by the muscle weakness and skin rash. This kind of disease is more common in adults and children alike. This disease generally occurs in the age group of 40 years to early 60’s. In children, the disease affects between 5 to 15 years of age. This kind of disease is more common in females as compared to males. There is no particular remedy for this disease, but periods of remission happens when symptoms improve gradually. Treatment can clear the skin rash and helps to regain muscle strength and functioning of the muscles. Dermatomyositis causes The exact cause of this disease is still not clear. However, researchers have found similarities between this disease and auto-immune disorders. Doctors have also established the link between these two diseases. Auto-immune disease occurs when the body’s disease fighting cells also known as anti-bodies attacks healthy body cells. It leads to compromised immune system. Viral infection may also contribute to this disease. Symptoms of disease The major symptoms of this disease are mentioned hereunder: Skin changes- When a person suffers from this disease a violet coloured red rash appears on the skin and most commonly on your face and eyelids and areas around nails, knuckles, back and chest. The rash can become patchy with bluish colour discoloration and is often labelled as Dermatomyositis. Weakness in muscle- As the disease progresses, muscle weakness appears like the muscles close to the trunk, upper arms, and back gets affected. The weakness affects both the right and left sides of the body and it gradually worsens with time. Other symptoms of this disease include:  Fatigue  Problem in swallowing  Fever  Hard calcium deposits under the skin surface  Fatigue  Weight Loss  Fever Diagnosis Dermatomyositis is generally considered as inflammatory disease that is easy to diagnose because rash is associated with it. Your doctor will be able to diagnose the disease with amyopathic Dermatomyositis if you don’t experience muscle weakness. Other tests that needs to be performed to confirm it includes:  Magnetic Resource Imaging- to have a look at abnormal muscles  Electromyography- to record electrical impulses to control the muscles  Blood Analysis- to check the level of anti-bodies  Muscle Biopsy-sample muscle will show inflammation and other problems related to the disease
  2. 2.  Skin Biopsy-skin sample will show the changes on the skin Dermatomyositis treatment Though there is no remedy for this disease, but treatment can improve the condition of the skin and muscle weakness. Prompt treatment improves the condition Corticosteroid medication- In majority of the cases, corticosteroid medications are the most preferred way of treating the disease. It can be ingested orally or can be applied on the skin. The medicine lowers the response of the immune system, which ultimately reduces inflammation causing antibodies. The doctor will increase the dose of corticosteroids and then suddenly lower after few weeks. In most cases, the medications like prednisone are the preferred way of treatment. Medicines that are used to control the side effects of corticosteroids like Azasan and methotrexate may be used in case you have further complications. IVIG- IVIG uses healthy antibodies to block the attacking anti-bodies that target your muscles and skin. IVIG medication includes a mixture of antibodies that have been collected from several healthy individuals, who donate their blood. The treatments don’t last for a long tenure, and it is likely you need infusion of six to eight weeks. Thus, Dermatomyositis is a disorder that can cause serious damage and may lead to medical complications if not treated promptly.

  My report on my thighs, it has never been the same....

  STUDY:  MRI LOWER EXTREMITY RIGHT THIGH WITH AND WITHOUT CONTRAST
  
   REASON FOR EXAM:   Female, 42 years old.  Dermatomyositis
  
   TECHNIQUE:  Standardized fat and water weighted pulse sequences were obtained in all 3
  orthogonal planes, post contrast administration. 13 ml of Multihance contrast material was
  administered intravenously for the contrast portion of the examination.
  
   COMPARISON:   None.
   ___________________________________
  
   FINDINGS:
  
   There is extensive edema with mild enhancement of the muscles of the thigh, involving all
  compartments (image 4, 5, 11, 18, 25, 34/41, 1 10, 20, 29/37 axial inversion recovery, 33,
  24, 20/41 axial T1 fat-sat postcontrast, 13/37 axial T1 fat-sat postcontrast).  Myofascial
  involvement is present.  No skin involvement is demonstrated.
  
   There is no soft tissue mass.
  
   There is no fluid collection.
  
   There is no hematoma.
  
   The right femur demonstrates no fracture, infiltrative marrow process or osteonecrosis.
   ___________________________________
  
   IMPRESSION:
   Extensive myositis, right thigh
  
   STUDY:  MRI LOWER EXTREMITY LEFT THIGH WITH AND WITHOUT CONTRAST
  
   REASON FOR EXAM:   Female, 42 years old.  Dermatomyositis
  
   TECHNIQUE:  Standardized fat and water weighted pulse sequences were obtained in all 3
  orthogonal planes, post contrast administration. 13 ml of Multihance contrast material was
  administered intravenously for the contrast portion of the examination.
  
   COMPARISON:   None.
   ___________________________________
  
   FINDINGS:
  
   There is extensive edema with mild enhancement of the muscles of the thigh, involving all
  compartments (image 4, 5, 11, 18, 25, 34/41, 1 10, 20, 29/37 axial inversion recovery, 33,
  24, 20/41 axial T1 fat-sat postcontrast, 13/37 axial T1 fat-sat postcontrast).  There is
  myofascial involvement.  There is no skin involvement.
  
   There is no soft tissue mass.
  
   There is no fluid collection.
  
   There is no hematoma.
  
   The right femur demonstrates no fracture, infiltrative marrow process or osteonecrosis.
   ___________________________________
  
   IMPRESSION:

• 
  

I'm tired of hurting

I allow myself to cry.  Sometimes it's ok to let that all out.  I allow myself to get angry. it's ok to feel defeat as long as you get back up.  Mostly I try to live in denial,  my legs don't work well so I compensate, my arms are getting weak now, hmmmm I will have to figure that one out soon.  Its Sunday morning, my heart wanted to go so badly to church with my family...my body is failing me .  My heart and soul are weakening to this disease...I cant give up. I must push through this, by babies need their mom, my sweet husband needs his wife.  But I am just tired.  I'm so tired of hurting. Jesus take the wheel this week....I need you to carry me awhile....

Martha, you are a bitch and I hate you so much

Another day in the life of Martha

There are posts I write but don't publish, my last post you don't get to read I was ANGRY...Some things are better not shared....  Luckily those moments don't last long but they are hard days to overcome.  It is so important that I stay positive, to not let Martha steal my joy.

I have struggled lately with my strength, it's hard to go up and down stairs, and my arms are starting to get weak as well, This has worried me as well, I have fared well with weak legs but I worry about how I am going to deal with my upper body not functioning.  I would classify this like having MS. It's not, but I get how they feel. Not being able to go up and down stairs or chairs or cars,  It can really knock you down, literally and figuratively. My skin is like paper thin these last few months, I just hit my skin wrong and the top layer peels and becomes a sore, sigh. I have found gloves that are supposed to help arthritis but it also covers my hands from brushing up on anything and peeling....so  I have my joy in my family and kids I watch every day.  They  all get me out of bed and make me do life without feeling sorry for myself.  They make me laugh and see the awesome things in everyday life!!

I did allow Martha to get me a little yesterday.  My son had his first competition in band and I used to go to the whole event, it's all day but yesterday I couldn't. I drove just to watch his performance then came home, in tears.  Even if I did decide to stay the sun was direct on the stands, even if I made it up the bleachers the sun would of destroyed my skin, and the sweat would of been obnoxious, i would turn red as a beat....If my son wanted me there the whole time I would of, but I know it was enough for me to drive and see him.  I would NOT let Martha take me watching him away. She is slowly taking over my body but she will not take my family.

the "other crap" that comes with Martha

Sweat.  Good pink elephant tails!!  I. sweat. so. much!  I mean, I just look outside and drip...drip...drip,  it's not the ceiling leaking, it's not raining inside, it's my hair ends, my eyebrows, my pores,,,,I mean what the heck?!  At times, after I chase the grumpy people at Kroger to give them a smile, I could of been the crazy lady in aisle 10 that has completely emerged herself in the frozen pizza section of the freezer.  Now, I will tell you the pizza I wanted is waaaaaay in the back but really you have caught me taking a quick nap to cool off....  Could it be menopause? sure, I did have the most amazing hysterectomy awhile back.  Could it be all the weight I have gain seeping through my pores? I wish, only if it made me skinny again. Nah, it's her, my nemesis, the one I strongly strongly hate.  Martha. She's a jerk.


You will read a lot about my weight gain.  You will get tired of it. but I don't really care.  It's my struggle and I vent about it.  Its frustrating because, yes, the medicine and Martha contribute the problem but so does my eating habits...I eat 75% crap I'm addicted to easy food.... and wala you have gained 30 lbs in a year. I have always been a skinny girl, ALWAYS. People thought I was anorexic ALL THE TIME. My friends would say she eats all. the. time... It was annoying. I was in a car accident that landed me in the hospital for two weeks, I couldn't eat, I would always throw up, the nurses thought I had anorexia and kept telling my parents that.  Thank God my parents never told me that till later bc I may have been stabby about it. When they found out it was my pancreas they changed their routine.   I couldn't really say anything bc I would get all the people that weren't skinny telling me they wished they had my problem.  Funny story.  My High School gym teacher, every year, when we would do the state physical testing and I had to measure my fat, I would have none to register. She told me Heather, one day you won't be this lucky, Your metabolism will slow down, Her name was Mrs. Jones....name sound familiar? Ya, I married her brother in law!!  So she gets to see she was right !! She s cool, she gets it. I love her.

It's Monday Y'all !!

Good morning loves!  It's Monday!! Are you all happy?  You should be, you're alive and you can be something to someone today! I tell my boys everyday when I drop them off to school, to just smile at someone, you don't have to talk to them, just smile and keep on walking. It could change a person's WHOLE day!! Sometimes, I love to smile and say good morning/afternoon to the grumpy people at Kroger, they are  my favorites! I can spot them right away and it's like a mission...gotta get them!! They just crack me up!! What do I do when I'm the grumpy one at a store?  Good question, if I see someone I know I duck and run...no joke, when you're grumpy you want to be left alone,,,but when you cross a smile, it does make your heart feel better even if you're feeling stabby...I know. I've been at both ends. Try it! It's fun!!

I didn't sleep well last night, that's new, I normally sleep well . It's been going on for a couple of weeks...could be Thoms snoring or the fact he makes the bed freaking HOT or that I sweat small ponds on my pillow and wake up almost drowning.   In this time of my body resting and my brain not shutting up, I think, a lot... I was  remembering my first fall....now laugh with me,  read and imagine...When I was first diagnosed the....she...Martha, had attacked my leg muscles and arm muscles. I had severe myotis, ( hard to explain, my muscles were severely inflamed) my thigh muscles are forever weak because of it... This disease only affects certain muscle groups...(one being the heart which is eventually the fatality of it all)  but I digress and  back to laughter. So now you have the backstory of why I fall....I was still new to this process of Martha, so I forgot that certain muscles just don't work well anymore....I have this dog. Sophie. small and white, hyper,  we all have said mean things about her but I love her and  secretly my boys and hubbs love her, anyhow, dumbass runs out my front door to escape the last home she will ever have (she's had two homes before ours) toward the neighbor's dog who would eat her in one bite. Hindsight maybe I should've let her go (just kidding)  I run after her, made it down the stairs, 20 feet later...splat...kaplunk...timbeeeeer..and I mean not graceful, not pretty, splat.  my legs gave way like gumby, I tried to catch myself with my arms, yup at that point they didn't work well either, soooo down she goes, spread eagle, nose to the grass.  I don't move. Holy crap I hope no one saw this...hold still...no, I'm sure everyone saw and they will think I'm dead!!!. problem, how do I get up? I look side to side,  I have to roll over to my back, 3 people were out in their lawns, including my hubs, I get up like a very old person that's 9 months pregnant, it wasn't pretty, bow, and look around again...no one saw!!! Praise Jesus!!! PHEW! CRAP! no one saw!!! and now I can't  run to get the..dumb...dog. Needless to say she's lucky to be alive , after I got the hubs to get off his tractor to chase the one he sooo loves, Sophie survived the neighbors dog, Thom having to stop his flow of mowing to get her, and me, if my arms were working, I would of possibly.....done nothing, because then she looks at you with those eyes of cuteness and everything is ok again, in her world.   Me? That wasn't the last time I will fall...but I have to save my stories of me and Martha for later...

In all of this my relationship with the Lord has brought new meaning to grace, mercy, forgiveness, patience and sovereignty.  Even in my stabby days I know he is present. I feel him.  When I don't, I have to ask, Who moved?  Did I take charge again and start doing things my way?  I have learned that my sweet Jesus doesn't leave us in our times of trouble and trial. When you ask "where's God in this?"  my friend, he is there, but you're angry and blame him for your pain,  a wall has gone up.  When you learn you are not a hero, you don't got this ,this is not his fault and just pass out in his arms you will then understand, I moved not God. It feels good to let Jesus take the wheel and know he's got this. I talk to Jesus all day,( especially when my son is driving)...Its peaceful to me it's the reason I try and step on Martha everyday with a smile. I am truly struggling physically everyday but have learned that attitude is EVERYTHING!  I will be ok with this change, this hiccup in the road, I will be ok with not being able to be in the sun, ( I love the sun and the beach and being outside and riding with the windows down in the car)  I have two littles that I watch everyday and they keep me on my toes. I love being with them and doing things. It makes me get up, I have to.  My two sons need a mom who doesn't stay in bed all day everyday because she hurts. I have a husband that has been so patient and kind these last two years and doesn't deserve a wife that could kill him with just a look and he didn't do anything wrong (most days). I refuse to let Martha steal my joy. But with that I DO allow myself to grieve, to be stabby, to rest and not feel guilty about it. I'm not perfect. Monday through Thursday I am pretty good, Friday, I start the decline and by Sunday I sleep. It's my pattern. It works...mostly. If anything from this I can share with you , your relationship with Jesus is key. Letting go of the crushing anger you may have from situations and your attitude about what cards you have been dealt must go. I know this. I'm living this.  You can choose to be stabby and hateful while you make everyone around you miserable or you can choose to own it. Ya, I've got Martha, she's a nightmare and I hate that I have her but how am I going to deal with this... I choose to be happy with a side of stabby every once in awhile...

Much love,
Heather
and Martha

Martha...my life long enemy...fighting the erg of complete meltdown and grief that she brings...I will survive, I will kill her one day and it will bring me all the joy she stole from me!

Hello my new people, we are doing this adventure together  of venting to the web.  My family and friends have heard my woes all to much and I hate complaining  ALL. THE. TIME to them.  Sooooo lucky you web friends!  As I am sitting here feeling very sorry for myself  (for what you ask) I am a 43 (I think, maybe 42) mom of two teenagers boys that don't get in trouble much and a fantastic husband,.. the problem? I have Dermatomyositus, I just cant get out of bed this weekend,  My mind is saying "get up you fool, you're missing ANOTHER day with your family" as my body is saying "shut up brain, I KNNOOOOOW but (and here goes my everyday complaints) my knees burn, my hands hurt, my head is painful again, my thighs are permanently weak, I am depressed and my fatigue is real and my heart is low....I just cant. I so want to get up, but I just cant.  

Dermatomyositus: an Infammatory incurable disease marked my muscle weakness and skin rash. pain areas in joints or muscles (both in my case)  fatigue, difficulty swallowing, rash on face and chest area... blah blah blah 

So I'm learning this photo process, but when I go outside not protected, I get little blisters,,,this was a blister that I put a band-aide over so not to leak on my bed. In the morning I pulled the band-aide off and walaa, the band-aide took my skin off as well. Lesson learned. No band-aides.

 I'm feeling pissy today... like if you come in my room with flowers, I will breathe fire upon them and make them wither..(mainly due to the fact I haven't brushed my teeth, but we will say its bc of my mood)..and then yell at you to leave my room as my heart says please stay and keep me company. But who would want to stay with a hateful gru that is mouning her loss of independence? Heck, not me! (specially with fire breath) 


I got this stupid diagnosis about a year and a half ago,..turned my life upside down,,I had this ridiculous red blemish on my face so after awhile I went to the dermatologist.  She diagnosed me with rosacea and was about to leave when she accidentally bump my arm and I winced in pain.  Long story for another day short, I got diagnosed with Dermatomyositus with a side of possible cancer, they found 5 tumors,,,,After 6 months of every test and meetings with oncologist,.. many tears in the shower begging God for it not to be cancer, God answered and said OK. Its not going to be cancer but the tumors will be Aspergilios,,, yup, not cancer but the same fate as cancer. sigh, I need to be more direct in when begging with God.  I don't want any disease that will kill me before 75.  We are still in negotiations with that.  I have 5 tumors in my lungs and liver, I take this horrible medicine and I am down now to one tumor but it has not changed size. at all. like it's there just to remind me that Girl. you are NOT in control, you better keep giving it to God because he holds your future.....oh crap. fine. you got this Lord?  Its  ALLL  yours, because I also have this Dermatomyositus , ( we should name it, there is no cure for it so I may as well...Martha? Yes, from now on its name will be Martha)   So Martha is a very rare autoimmune,she and I don't always get along,  most days we tolerate each other, then there are days like today... Martha doesn't allow me in the sun...at all... and once I figure out how to upload pictures I will show you what she does to my skin. Its not pretty,and for a sun person, this is one of my depressions....two years now not being able to go on family vacations to the beach, heck, not even being able to go outside of my house!! Me and Martha, what we can learn from living with something we don't like, actually hate, sometimes Martha steals my joy.  You know, I like naming this disease...this writing has already helped my mood for today, 

 Dermatomyositus, aka Martha has won, joy stealer, just today.

There is so much more that I need to write and share, like how I have gained 30 lbs and the depression that comes just from that..losing my hair..the days I worry that the tumor will turn into cancer...the day I received my handicap card for my car..the days I fall in public.., but for now I just need to make sure I can fix all the grammatical errors, run on sentences, thinking about if I should delete that curse word,(I did) and do this all without deleting this whole blasted thing!  I may write daily, weekly, monthly and by the looks of my blogs before, 6 years...I don't know, I just knew today I needed to vent. My family deserves a happier mother/wife. Today Martha got me but tomorrow we will learn to get along because she will be with me for the long haul and I need to be stronger then her.