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.