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.