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.