Hips and Knees

Well I had my knee surgery on November 14th. Doctor said things went well, but I will get a full report next week when I go for my checkup. This recovery has been so much harder than my hip. Oh wait! You were expecting an update on my HIP surgery weren't you. I bet you are confused. Let me back up a bit.

On September 29th I had my hip surgery. It went perfect. Recovery was perfect. I am so thankful I saw a new doctor and had this fixed.

Two weeks after hip surgery I had an appointment with my knee doctor as a follow-up. I have been seeing him every 3 months or so, hoping that my knee would heal. I can't remember if I blogged about it, but Last December, as in 2013, I slipped on a tray at Taco Bell (totally my fault) and I heard/felt my knee break. Six weeks of PT and finally I got an MRI. My patella (knee cap) was messed up. Four more weeks of PT and it was doing MUCH better. Life continued. I started exercising more over the summer with James. Walking, hiking and some bike riding. My knee kept getting worse and worse. To the point I was wearing a knee brace every time we did something. So I returned from my scheduled appointment (2 weeks after hip surgery) and ended up scheduling knee surgery. Yep. My 3rd surgery this year. sigh. Basically, my doctor did a Lateral Release. He snipped the ligament. I guess in this case it is better to cut it than repair it.

This recovery has been harder. I am non-weight bearing, so that means crutches. I HATE CRUTCHES. So I am spending a lot of time sitting. I am not even leaving my house because I have steps and me + crutches + steps = disaster.

I will hopefully be able to walk without aide next week!!

A whole new ME!

This past month I stumbled upon an amazing concept called Bible Journaling. In a nutshell you spend time in the Bible (devotional/quiet time) and then you express yourself directly into your Bible with Art.

Here is a great Example from Shanna Noel's blog : here The above picture was taken from the blog post I linked you too. I have also immersed myself into a Facebook group dedicated to this. Journaling Bible Community. Find it here. This is a closed group...just ask to join!

I haven't started working in a Bible yet. I am personally waiting until I can purchase the one I want. It is a BEAUTIFUL leather journal Bible. Here it is on Amazon. Since I am waiting I have been using my Art journal and my Devotional journal. And collecting lots of ideas and supplies! But, I have noticed since I stumbled upon this concept that I have a new excitement for the Word of God. For so many years I allowed myself to have a surface relationship with God. I was hurt so many times by the church or people from the church that I turned away. Sure I prayed everyday, listened to K-LOVE and other christian music. But I lost that deep connection that comes only from spending time in God's Word. Reading, mediating and searching for nuggets of truth and promises.

Last week I found a devotional site/app that really resonates with me. She Reads Truth. I now eagerly get up in the mornings and jump into my Bible. Spending an hour or more devouring God's promises. I almost don't recognize myself anymore!

And for that I am Thankful!

Give Thanks to the Lord, for his Steadfast Love Endures Forever! Psalms 136

Reckless words pierce like a sword. Proverbs 12:18

I follow an amazing blogger Holley Gerth, you can find her blog here. This week she posted an amazing post on Words. This really really spoke to me:

A Commitment of Words

We commit to using our words to defend and heal, not to harm.

We will not gossip.

We will not belittle.

We will guard our sisters by always speaking the best about them, encouraging them into all God would have them to be, and offering grace instead of condemnation.

We will be loyal and loving, remembering that even if we disagree we still fight on the same side–never against each other.

We will use our words to build up not tear down, to bring hope and not hurt.

We offer our words as a powerful weapon to fight for each other on the side of all that is good, right, and true.

I will definitely be spending time mediating on this topic. You can read her entire post here.

There is beauty in the brokenness...

Hand surgery was a success. Came home with a simple bandage, able to use it without much restriction.HOWEVER, (there is almost ALWAYS a However) 2 weeks after surgery, on June 9th I fell. On my way to San Diego with my parents, sister and niece we stopped to get gas. I was walking from point A to point B and instead of going around a small wall, I attempted to step up the wall. My left hip gave out on me and I fell down. Landing on my hands and knee. The moment I fell I KNEW. I broke my "good" hand. Of course. I injured my newly fixed hand a tad too. I spent the next 3 days icing my hands and limping around with a sore hip. I followed up with my hand doctor as soon as I got home and sure enough I broke my left thumb. Plus I now sport a lump under the surgery site and it is still swollen and hard. With time it should heal.

A week after I fell and broke my hand, I tripped on small ledge in a parking lot. I immediately KNEW that I tore something in my hip. Oh the pain. I called my hip surgeon and was able to get right in to see him. He did his exam and decided I was wrong, I didn't tear anything. I begged him for a MRI and he reluctantly agreed. The results of the MRI?

Interval progression of mild left gluteus medius insertional tendinosis with interval development of small interstitial partial thickness tears of its anterior insertion.




In short, I broke my butt!



I had a 3-4 inch tear in the butt muscle. My doctor said it would heal on its own and there was nothing I could do for it. I PUSHED for physical therapy. He reluctantly agreed. For six weeks I went to pt twice a week, in addition to pt, James and I walked, hiked or rode bikes 5 days a week. I tried really hard. I pushed myself through so much pain. My hip and my knee (from an injury a year ago) continued to cause problems. I finally ended up using a knee brace anytime we were active. I returned to my doctor and he basically informed me he was done with me and referred me to his partner. I saw the new doctor a week later and he declared with 100% certainly that I would only heal with surgery. So over 3 months after injury I had surgery to repair the tear. Surgery was 10 days ago.

Next week I see my knee specialist. I have been checking in with him periodically regarding my knee and kneecap. The MRI of it (a year ago) said I had instability and a tilted knee cap. I did have nearly 3 months of pt. Time was suppose to heal it, but with activity it just got worse. I wouldn't be surprised to have surgery scheduled soon.


Also next week, I get to meet my NEW RHEUMY!! I have such HIGH hopes for this appointment.

Later this month, after I figure out what the plans are for my knee, I have to have a revision surgery on my right pinkie. The sagital band needs to be tightened a bit. There is much clicking when I use my pinkie. And after a period of using, like when crocheting, it will lock and I have to massage it to move it again. Fun times.

I TRY my best to not question the why's. I TRUST that GOD KNOWS my story. I am learning so much recently about myself, about MY faith. I am growing daily in my relationship with God. And am excited to start documenting this part of me too! There is HOPE in our tomorrow's.



"Life isn't suppose to be easy. Life is hard. Very hard. But there is so much beauty in those dark valleys. I believe God gives us more than we can handle, so that we are broken and have no choice but to rely on Him. I understand you are struggling and feel so very alone. And I am so sorry. My heart really is broken for you. But death in "your time" isn't the answer. Ever." -Me

Another Day, Another Year

As usual the Good intentions to keep this blog updated just didn't happen. You would think that it would be simple to just type up a few simple thoughts. However, I never seem to be able to do that. I have great excuses, but they are just that... excuses.

So what is new? So much! Yet so little.

I have finally scheduled surgery for my right hand. On Wednesday I will be having my 4th hand surgery. Two things will be getting fixed. First the tendon that has been hurting for many years will be fixed. There is a bone spur that is rubbing it, so this will be shaved down. The sheath for the tendon will be opened up, allowing more room for the tendon to do its job. And if the doctor finds any damage to it, he will repair it. Also, the doctor will be tightening the joint to my thumb. And taking a look to see why it isn't working properly. I should have a simple recovery. I am looking forward to being able to crochet, write and use a knife again! As well as a few other simple activities!

I still haven't found a new Rheumy.... for the last 2 years my neurologist has done his best to manage my Ankylosing Spondylitis. But this is his last month in his current position. He is leaving for a new job in a new state. Living in a city with a million snow birds and retirees you would think we would have our pick of Rheumy's but we have only a dozen or so....crazy. Thankfully I don't need to find a new neurologist, yet. I plan one seeing the replacement doctor. Praying he is good and has some new ideas for my treatment. My headaches have been getting worse, so much pressure in the back of my head. And this last week I have felt/heard a pop in my neck, three different times. The first two times I was in horrible pain for the remainder of the day, by the next morning I was much better. This last time, yesterday, the pain was way worse and today I have not recovered. I can't bend to look down and turning either way is difficult. Come Tuesday morning I will be making an appointment with the new neurologist.


God is Good, All the Time!

Time for another update

Wanted to document what's new with me. This journey to a healthier me, that I am on. I am in a very frustrating place medically, however, it is also an exciting place. I have new hope.
 
Last fall my rheumatologist started making noises that she just didn't know what to do for me. She refused to discuss treatments for Ankylosing Spondylitis, since my spine has not actually fused. This is backward thinking!! With this disease you want to PREVENT fusion. It WILL happen, it's just a matter of time. I left her office frustrated yet again. 

In January I decided to wean myself off of all my medications. The thinking behind this was two-fold: 1) I just didn't have the $1000 the meds would cost (new year, new deduction) and 2) They weren't really doing a great job anyways. I also canceled my spring appointment with my Rheumy, why see a doctor that isn't willing to do Anything and Everything to help me. So now I am kind of on my own.

So what is a girl to do? I started looking for healthier, more natural alternatives. What I have found has been wonderful. And something James and I have both embraced completely. Essential Oils.

For my birthday, James got me a variety pack of oils from Plant Therapy. One of my favorite oils is Pain-Aid. It has definitely helped with some of my issues. Unfortunately it hasn't been the complete cure I need. But I am so thankful to have this aide in healing.

We have also been using E.O's in all aspects of our life. From natural cleaning products we are making ourselves to beauty products like deodorant, lotions, soaps and scrubs. I will for sure be sharing some of my favorite recipes.

Well back to my health. I am really struggling with a few issues. My right wrist has hurt for nearly a year. I have a tendon that is nearly torn. Like most other injuries I never know how I get hurt. This tendon is kind of a spare part, surgeons often use it repair the thumb. So the plan of action is surgery to cut this tendon. It is possible to repair it, but the doctor believes that it is too injured. There is a slight chance that it will fix itself, and I can avoid surgery. Fix isn't quite the right word, we actually are hoping my tendon will burst on its own. I am waiting until the beginning of June to schedule surgery. We have a fun camping trip scheduled for Memorial Day Weekend.

A couple of weeks ago, while unloading groceries, a drink bottle fell off the counter and landed on my foot. Breaking the 4th metatarsal. Due to the location, I was lucky enough to skip a cast. Just have to wear open toed, flat shoes. Still hurts a bunch. But it isn't the worst thing I am dealing with!
One of my biggest issues, currently, is my lower back. Last summer I received several injections in the L5-S1 joint. Unfortunately, the pain never went away. I have a disc bulge in this area, as well as a mass. In the last month, I have started experiencing extreme calf pain and some numbness and tingling. My neurosurgeons PAC doesn't seem concerned, rolling my eyes.

So, with several doctors telling me I don't fit there checklists for treatments, I have applied for an appointment with a doctor in Phoenix. This feels like my last hope. But at least I have some hope.

How does time fly?

I know I say this all too often, but I can't believe how time has flown by. I keep promising myself I will post often and then MONTHS fly by and life goes on. So lets see if I can get caught up a bit. Bullet point style:

• My hand healed great. I have amazing PT support! Every so often it starts to tighten up, but as long as I massage it and loosen the scar tissue up all is good.
• My knee still has some issues. It likes to give out every so often and it loves to swell. But recovery can easily take up to a year. 
• My hip never got better. We thought the knee was causing hip issues, or maybe arthritis. But it turned out I had a tear that needed to be repaired. However, it was too damaged and the surgeon was only able to clean up the fibers. It has healed great, except for the groin area. Still lots of pain there.
• During the MRI for my hip, the radiologist discovered that my cyst on my right ovary was still present. We are keeping tabs on it, might have to have it removed, at some point.
• Also found on my MRI was a mass in my lower back. After a repeat MRI to get a closer look, it was determined to be a Tarlov cysts. The doctor isn't too concerned, but we will be keeping an eye on it and monitoring my pain.
• I have had 2 failed epidural shots into my lower back. And 1 successful facet joint injection.
• I have maxed out my Lyrica dosage and determined that I didn't get any good results from it. Just gained a ton of weight. So I self tapered myself off of it and feel much better!! 
• We bought bikes for James and Me and the kids have hand me down bikes. We take family rides often.

Do you see that last bullet point? I am active! I am exercising! We ride several times a week and average 8 miles a ride. Crazy!! Even though I still struggle with several things, this is the BEST I have felt in years!

My sweet family is doing good. Better then good! We are Exceptional!

A week of appointments....

I was looking to my rheumy appointment with such hope. Yesterday was the big day. I had heard from several doctors that this particular rheumy was amazing, she new her stuff. I am so confused. If that in indeed fact, why did I walk away from her office with my original dx of anklosing spondylitis stripped, and hinted at a dx of fibromyalgia?!? At this time she doesn't want to lock me into one dx, so I truly was left hanging. She mentioned Arthraligias Myalagias, which google says is just joint & muscle pain. I could just scream.

However, she did spend over an hour with me and treated me with respect. She read all my files I brought from other specialist and she ACKNOWLEDGED me!  She upped the medicine I am currently taking, and is adding Lyrica...well as soon as my insurance approves it.  At least I can understand this doctor. sigh.

I just don't know what to think. My symptoms line up with As. I am HLA-B27 +, but because I have no fusing of the bones...UGH!

Monday I went to get a mammogram. Just a follow-up. Got my results in the mail today. There are scattered fibroglandular elements in both breasts. Perfectly normal. Whew! At least that is going well. I don't need to have another one for 2 years. Yippee Skippy!

Today I went to see my hand surgeons PAC. I can not open my left hand all the way. The ring finger and long finger have developed intrinsic tightness of the knuckle joint. These two joints are locking my fingers toward my palm. The PAC ordered physical therapy, but my PT is super busy and I can not be seen until next Wednesday. I am kind of afraid of what my hand will look like in a weeks time. As it is getting worse daily. If PT doesn't work, surgery may be required. Crap! Oh and did I mention that it hurts...alot.

Tomorrow I get to see the dermatologist. A first for me. Just a simple mole check.

I have also decided, to ask my PCP for some depression medicine. I am tired and overwhelmed with all this medical crap. My weight is climbing, climbing climbing. Not much I can do...Well that isn't true. I could eat better. I do an okay job, but apparently not good enough, as I am at my all time high. The rheumy told me to start exercising as if I am an 80 year old lady. Slow and easy! lol That's gonna bring the weight off real quick.

I am such a grumpy these days...This too shall pass! I WILL CHOOSE JOY.

Lifes Valleys

Well I have not kept up with my goal of blogging everyday this month. My hands have been hurting and my head has ached every moment of every day. At times I have had two headaches. My normal headache at the base of my head with enough pressure that I felt my head would blow up AND a stabbing pain behind my left eye. Headaches are exhausting and so consuming. But who am I to complain. I have what is important, I have my children.

I have always felt that it was an honor to pray for others. Sometimes it helps me remember that what I am dealing with is minor compared to the tragedies of others. I believe that God has called us to take others burdens and to do what we can as they walk through their valleys. Two families are heavy on my heart tonight.

Joshua Parker is a very young boy that has endured more then any child should ever have to endure. He doesn't have much time left here in his earthly body. But Joshua says it isn't quite time to go see Jesus yet. He is such a strong boy. And his mama is amazing. 

I have followed his journey for quite awhile, yet just today I realized that one of his illnesses is Chiari Malformation. I am amazed how I never noticed this illnesses, never knew that it existed, until I found it on my MRI. Now, I find others have it, in blogs I have read forever. The word Chiari just jumps out at me.

Another family that desperately needs our prayers is from a blog I have read for a long long time. Joany's sweet daughter, Carly died 18 months ago unexpectedly. She had down syndrome and was a cancer surviver. This past weekend Joany's house burnt down and her 22 year old son perished in the fire. Not only did she lose another child, she has lost all mementos of both children. To have nothing. There is a third child, a daughter that is 25 and just recently enlisted in the Navy and is away at training. My heart is breaking for all she is enduring. 

There is not much I can offer to those that are suffering, whether it is sickness or loss. But I can offer my prayers. If I read your blog, your facebook updates or your tweets, know that I am lifting you up to the One who Heals all. May you feel God's embrace as He carries you through the valleys.

New Beginnings

Two phone calls today, two major doctor appointments set. I originally had an appointment with my new rheumatologist for December. I am so excited that they had an opening come up, 2 weeks from today. I also received a call from a new Neurosurgeons office. I get to see his PAC on the last day of this month. Steps in the right direction. As much as I am looking forward to answers, I am nervous. These new doctors might not have the answers I long for. But as long as they listen and acknowledge me I have made progress. Good news....

In all things God is Good!

If we just sit and hurt, nothing will ever change for the good.

This sentence makes me sit back and truly think. I believe that my personal pain is more then physical, it is also a mental hurt and my heart hurts. 

Being ill with multiple illnesses, I am fully aware of the physical pain. My body hurts ALL THE TIME. The degree in which I am in pain varies throughout the day. Each moment is different then the moment before. When asked to specify what hurts I am not always capable of answering this completely. 99% of the time my answer will be the body part that hurts the MOST at that moment in time. To be completely honest would be too overwhelming, for myself and the questioner.

My mental pain comes from trying to keep up with the daily pace of life. Often with a massive headache. My mind is constantly in overdrive, processing the lights and sounds around me. Often I can't keep up and thoughts become a jumbled mess. Unable to process what is being said to me is almost like being deaf. I can hear the words being said, but they don't register. It is quite frustrating for myself and those around me.  Being fairly new to my illnesses, I am mentally exhausted. Trying to educate myself and those around me is my new full time job. Arranging medical appointments with doctors, physical therapy, lab work and scans, having and recovering from surgery is all consuming. Thinking about the next step and praying that the medical professionals take you seriously and acknowledge you is stressful. My mind hurts.

My heart is in pain too. The emotions of being sick can be overwhelming as well. But I think having an "invisible illness" or not having a "socially acceptable illness" causes my heart to hurt the most. Being honest here. The general public gravitate to certain illnesses. The one that comes to mind first is cancer. Sometimes it feels as if you are only truly sick if you have some form of cancer. When you say you suffer from Arthritis the reaction is "oh just arthritis". And honestly I haven't told but a handful of people about the Chiari. Why bother. One, it is quite complicated to explain and two, will they even care. sigh. My heart hurts because there is no support in my life, beyond my husband and mom.

 If we just sit and hurt, nothing will ever change for the good.

Making change for the good....

I need a game plan. I do not want to sit and allow pain to rule my life. I need to move forward. So how am I going to do that?

Physically: I plan to work towards a healthier life style. Making changes to my eating habits and my activity habits. I want to do this, I need to do this.

Mentally: I need to slow down and realize my limitations. Accept them and adjust my life to my new pace. Stop obsessing over the what ifs. And focus on the good.

My heart: I will dive into God's truths. Stop looking for others to fill His shoes. Be thankful for what I do have. Choose Joy!

In all things God is Good. In my illness God is Good. In those that disappoint me, doctors, friends and family, God is Good. My God is Good and My Good is Faithful. 

Waiting:

Many times throughout the day I feel as if I am in a constant state of waiting. Waiting for the next phase of my life. Waiting for the day I can begin to do the things I long to do. Waiting to heal. Always waiting to heal.

Surgery went well I suppose. I had minimal pain in my hand, but suffered a nasty headache for a week afterwards. Actually, I still have a headache. I have a call into a new Neurosurgeon's office, for a second opinion. Hopefully I will have a scheduled appointment soon. I fear that the Chiari is causing more issues then originally expected. Here are the symptoms that are linked with Chiari Malformaton I. Mine are underlined and bold. Link to original list.

• Headache (esp. if daily or at lower back of head)
• Painful tension in neck
• Fatigue
• Migraines
• Dizziness
• Visual disturbances / loss of vision / spots in vision / double vision / seeing spots or "halos" / nystagmus
• Tingling / numbness in the extremities
• General imbalance / clumsiness
• Memory loss
• Restricted movement
• Intolerance to bright light / difficulty adjusting to light change
• Vertigo from position change or sudden standing
• Difficulty walking on uneven ground / feeling ground under feet
• Poor / degraded motor skills
• Difficulty driving
• Difficulty negotiating steps
• Pressure / pain in the neck
• Pressure / pain behind the eyes (soreness in the eyeballs)
• Back pain
• Neck spasms
• Insomnia
• Ringing in ears (like the tone heard in a hearing test)
• Swaying
• Pain when changing position
• Tingling / crawling feeling on scalp
• Intolerance to loud / confusing sounds
• Decreased sensation to touch in extremities
• Decreased sensitivity to temperature
• Pain & tension along ear / eye / jawline
• Difficulty swallowing / lump in throat / sore throat / swollen lymph nodes
• Drooling
• Spontaneous vertigo
• Hand tremors
• Poor blood circulation / cold hands & feet
• Sinus / mucous problems
• Sleep apnea
• Decreased muscle tone
• Pressure in ears / ears feel stopped up
• Nausea
• Difficulty reading / focusing on text
• Depth perception problems
• Burning sensation in extremities / shoulder blades
• Menstrual problems / severe cramping during period
• Fluid-like sound in ears (like water running)
• Loss of sexual interest / lack of sensation in pelvic area
• Pulling sensation while sitting / standing
• Intense itchiness w/profuse sweating
• Slurred speech
• Gag reflex problems / lack of gag reflex
• Pressure / tightness in chest
• Loss of bladder control
• Frequent urination
• Dehydration / excessive thirst
• Electric like burning sensations
• Unequal pupil size
• Loss of taste
• Popping / cracking sounds in neck or upper back when stretching
• Dizziness
• Loss of smell / problems with sense of smell
• Dry skin and lips
• Sudden / abrupt changes in blood pressure due to awkward position of head
• Hiccups associated with drinking carbonated beverages
• Skin problems

Other: migraines, oscillopsia, lump in throat, colour blindness, albinism, visual floaters, astymosism, thinning hair, hear heartbeat in ears, throat closes when lying flat, vomit in sleep, swollen face, low body temperature, low blood pressure, legs feel heavy, "strangling" feeling, "floating" sensation, thickening of finger joints

Crazy! When I see it written out like that it scares me. I have always just assumed that many of these symptoms were related to my arthritis. But to have two huge illnesses is overwhelming. So I continue to wait. Wait to feel better. God, please, I beg of you, help me to feel better. This is not the life I expected to live. Help me to live it well.

October 1st

I commit to writing on this blog at least once a day for the entire month of October. Even if it is only to jot down 5 things I am grateful for. Which is how I will start today. 5 Things about my DH~ (Dear Husband) I am amazed daily in the little things he does to ensure my life is easier.

1. He ALWAYS walks in front of me when we are going downstairs. He matches my speed and allows me to hold on to him so I don't fall down. 
2. He makes dinner 90% of the time, even though he works full time and I don't work at all. 
3. He loves me, even when I feel most unlovable.
4. He takes care of the cats that I wanted. Cats that I promised to take care of.
5. Everyday my DH texts me and asks me how I feel. Telling him I am fine isn't enough, he wants a lists of what hurts. He truly wants to know how I feel.

I am blessed. Thank you God for my best friend. My perfect mate.

Something new....

This week has been exhausting. I knew it would be when I reviewed the calendar last weekend. It was full of day to day stuff, doctors appointments, the children's sports, and youth group. For the average gal this would just be tiring, but I am not average. I suffer from a handful of illnesses that make things much more difficult. On top of being physically busy, my mind has been pre-occupied with health issues.

Last week I picked up a copy of my medical records from the rheumatologist that I fired. I have an appointment with  a new doctor in December (of course it takes months and months to get in with a specialist, sigh). The first thing I did when I got home was read my records. There weren't many pages to it since I had only seen this particular doctor a few times. Nothing was out of the ordinary, that is until I got to the very last page. An MRI report that I had done last August. Last, as in the year 2010. That is 13 months ago. An MRI I had done of my brain. Incidentally, that same day I also had an MRI of my spine that I was unable to complete due to an overwhelming feeling of suffocating. Anywho, this particular report of my Brain showed abnormalities. Hmm, that is strange since my neurosurgeon never mentioned anything. I clearly remember last year when my neurosurgeon called with the results of this MRI. He left a voice mail stating that I had a brain, (it is always funny when surgeons try to be funny!). There was some evidence of some swelling. Let me back up just a moment and tell you the reason I had this particular MRI.  It was because I had a c5-c6 fusion at the end of June and a few days prior to the MRI I smacked my head on the car jam, resulting in a concussion.  Because of the brand new hardware in my neck, the Massive headache smacking my head caused and some new tingling in my arms...the MRI was ordered. My neurosurgeon suggested I rest lots and asked me to see my neurologist.

Neither of these experts ever mentioned that my MRI CLEARLY showed findings of mild Chiari Malformaion I. In a nutshell, Chiari malformation (kee-AHR-ee mal-for-MAY-shun) is a condition in which brain tissue protrudes into your spinal canal. It occurs when part of your skull is abnormally small or misshapen, pressing on your brain and forcing it downward. Chiari malformation is uncommon, but improved imaging tests have led to more frequent diagnoses. The adult form, called Chiari malformation type I, develops as the skull and brain are growing. As a result, signs and symptoms may not occur until late childhood or adulthood.

Um what? How in the world did that pass by my doctors? Well let me tell you. I called my NS as soon as I could breathe again and his reply, through his assistant, was that because it said mild he was unconcerned. And also, because it was found on a brain MRI and not a cervical MRI. Hmm.... I have several issues with this response. From the research I have done, and oh boy have I done my research, showing Chiari on a MRI is so important! With these findings and with the many symptoms I have this needed to be addressed!. Chiari does not go away, it progresses and there is NO CURE. The doctor should have taken into account that I can check of a majority of the symptoms. The doctor should have at least mentioned it to me and told me to be aware of this situation and come in if any new symptoms arise. The doctor should have at least told me to come in for another MRI in a year or two. But no. He choose to ignore these findings. Period. He took away my right to be knowledgeable about MY BODY. The doctor should have reread my MRI of my spine, from May of 2010, where it is noted that I have low lying cerebellar tonsils.

What am I going to do with all this information?

With the knowledge of the mild Chiari Malformation I: I will continue to obsess, err education myself. Continue to be aware of my headaches, numbness and tingling of my face, pressure in my brain and neck, balance issues and a myriad of other symptoms. I will seek the expert opinions of other professionals, maybe someone who has dealt with this condition a bit more than my current doctor.

With the knowledge that my doctor discarded something so important: This one I will have to think about. I liked this doctor. For the most part. I remember feeling "dismissed" after my fusion. That the headaches and other issues I had were "in my head". sigh

This was just one small portion of my busy medical week. I also had my first Physical Training appointment for my right knee. I met my new Primary Care Physician this week. I liked her! I had a follow-up appointment with my hand surgeon. And I scheduled my 7th surgery in less then 3 years.

TGIF!

I have value

Starting a new blog is very intimidating for me. I have another blog, that I used to journal on, but I took a long break and found it difficult to return to that particular place. That time in our life was difficult. And moving forward sometimes requires a fresh start. But looking at the blank box and actually putting down letters to form words is scary!

In my personal life I feel judged. Judged by family, acquaintances, face book friends, fellow church members....everyone. But I need to learn that more then likely the majority of those people I worried about, don't even think of me. I am just someone they know, a friend in passing. It is amazing how much credit we give to the people around us, when in reality we need to only be worried about ourselves and God. What does HE think of my actions, my thoughts, my choices? And how do those actions, thoughts and choices effect ME and my household?

I long to share what I deal with on a day to day basis. But, when I start to write I feel like I am complaining. But you know what? I am not a complainer by nature so why would I start now? But life is not rosy. It is gray. Full of medical drama and family drama. Raising 3 teenagers is bound to be dramatic. I also feel that I should have a theme, but that isn't happening. My mind is in too many places to settle on one topic! Man I have "over thought" this space! lol. But I am determined to do this. To journal my life. To mark the passing of time. And if I am judged, then so be it. I am worthy of having my thoughts "spoken aloud". I have value.

My journey begins. Whatever road my future holds, it will be shared.

Choose Joy!

Today I read a tweet on twitter, asking for prayers for a special lady named Sara . I followed the link to her blog to read a little about her. I was deeply saddened to read that "Sara is getting ready to head home to Him." 

I have always found it to be such a privilege to pray for others. And follow many many blogs where I get to do just that. I know that in my own life, when I hear that someone is praying for me, it just touches me. 

This afternoon I immediately searched around Sara's blog to find out her story and was astonished to read that she has one of the things I have been diagnosed with, Ankylosing Spondylitis. Upon further investigation I realized she is my age. I have spent a few hours today reading a few of her posts from the past three years. She has had it rough. Housebound for many years, unable to do much more then rest. Yet, post after post she is full of joy and thanksgiving for what she is able to do. And for the people in her life. I look forward to returning to her blog and reading many more of her stories. How she has Chosen Joy. I pray that her transition into God's arms are without pain. And those that love her are comforted by the knowledge of her future. And I pray that like her, I will Choose Joy, even on the hardest of hard days.