Thursday, October 20, 2011

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.

Monday, October 10, 2011

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.

Wednesday, October 5, 2011

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....

Tuesday, October 4, 2011

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. 

Sunday, October 2, 2011


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.

Saturday, October 1, 2011

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.

Friday, September 16, 2011

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.


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.

Wednesday, September 14, 2011

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.