Friday, January 14, 2011

Medical Update: After the Hospitalization (Part II)

Long time to see, Muselings!
Many of you have asked for updates about my health, especially since I was discharged from the hospital on the 21st of December, the Tuesday before Christmas. Now, they wanted to keep me longer, but because I could do all the medicinal titration off medications and such at home, without having to pay for another week or two of hospitalization, AND have me at home with my family, we agreed to do that. Even if they had insisted that I stay for longer, I would have checked myself out for Christmas, then checked back in. I was NOT going to spend Christmas in the psych ward *chuckle*.

Thankfully, God saw fit to allow me to go home for one of the best Christmases I've ever had. Family time was awesome, as was keeping in contact with one friend in particular that i made in the hospital: Rochelle Gerber. A strong Christian woman, although with many health issues, pain, etc... (with many of the conditions that I have), as well as a nurse, she and I bonded during our 8 days living together, and have stayed fast friends since. I've only had a friendship develop so quickly and so deeply once or twice before, and I thank God that He allowed me to have such a strong christian woman to support me during my hospitalization. It was actually quite cool--for the first 6 1/2 days, there were only Christan women in the secular hospital's mixed-gender Intensive Pain Ward. How. Cool. Is. That?!?! *grinning*
Our God is an awesome God! AND, He allowed me to minister to their lives and encourage them, while they gave me support through their understanding of my pain and what I was going through, and from all the nurses and patients adopting me in one form or another: Granddaughter, daughter, sister, best friend, etc...

I've even been offered a "daughter-in-law" position by the Yugoslavian nurse Merima. She wants me to date her son XD. I wouldn't mind having her for a mother in law, either! The thing is, I've never even seen a picture of this guy, let alone met him. Yet, if she's serious, I gave her my number and said I'd have coffee with him. Her smile was huge *chuckle*. She was my favorite nurse and the one who took the most care of me, although there were many others who were absolutely AMAZING!

When I was in the hospital, I had 10 major "episodes" where the pain and muscles spasms turned into full body convulsions, lasting anywhere from 15-20 minutes to 70 minutes. the first episode was 70 minutes, and they didn't get the anti-spasmodic, anti-inflammatory and anti-convulsive medications in me soon enough to curb the intensity. It had to wane on itself. After that, I couldn't walk. I was wheelchair bound, had to have the nurses or my friend Rochelle push me around. Thing thing was, they were all very happy to do it. The other patients comforted me, saw to my needs, and were able to take their mind off their pain or withdrawal symptoms so that they could take care of me. It was one of the most touching times I've ever had in my life. The next day, I had to use a walker to get around, but I promised one of the first shift nurses that I would be walking the next day. So, since I was too physically anxious due to withdrawal symptoms (from the narcotics they doctors had me on for so long) and in too much pain to sleep, I spent my evening and night hours practicing walking, holding onto the railing outside of the nurses station and walking back and forth, back and forth. I drank what vitamin and nutrient enhanced beverages were available, and what my stomach could stand, and did it again. I was exhausted, but the muscular restlessness and anxiety allowed me to keep going. In the end, I could walk. I had my nervous system and muscles re-tuned to be able to balance, even IF I had to walk haphazardly, NEVER in a straight line, and often with my hand on the wall or railing.

So, when the nurse walked in for her shift, I smiled at her and waved, then stood up, and took my first step, no walker in sight. Rochelle kept an eye on me, making sure I didn't fall, but the smile on her face made me feel so proud. But the nurse's face absolutely BEAMED. She smiled, walked over to me, held my shoulders and congratulated me on overcoming the debilitating side effects of my convulsions. I've never felt such accomplishment....and I don't know how quite to explain it. When the basic act of walking is stripped from you, and it's a result of diseases that you've been fighting for years, you're tempted to just give up and give in. When you have no energy, and your legs collapse under you, when your vision gets cloudy and your body screams in pain as your fingers desperately try to grip onto the side of your bed, to keep you from lying on the floor unable to move...well, your perspective changes. You find the simple act of moving one foot in front of the other as a miracle, you take each smile as a gold medal, you take each twinge, each flare, each overwhelming wave of pain as a sign that You. Are. Alive. That you have yet to live, that have yet to make a difference. You have been given another moment to bring Glory to your Creator, and that He is proud enough of you to allow you to stand up and face the world and it's challenges with His power and hope and determination behind you!!

So, over the course of my other 9 episodes, each causing me to sob, cry out, convulse, shake, struggle to breathe and struggle to stay concious, I came out smiling tiredly, joining the women in group, helping others stay positive and working again and agian to get out the wheelchair, to stop using the walker, because I had to repeat my work of learning how to walk again a few times. Thankfully, it wasn't as hard each time, and each time I was able to be happier and more at peace with what I had been given.

I hope that God has great plans for me, because He sure is not holding back in giving me trial after trial. I'm scared and elated to see what He has planned next.

After the hospital, and seeing people rededicate, regain hope, being repairing broken family relationships, work to overcome depression, and see light where once there was just darkness, I went home. I had Christmas with my family. I went to St. Louis to see extended family and spend a short but wonderful time with them. I paid for it all dearly in a major crash I endured once I got back home. But I kept struggling to push through.
And now we come to the most recent news.

You see, I'm not responding well to meds...the doctor just put me a new straight narcotic that is 50xs stronger than morphine...and that's not helping as much as they'd like. Plus, it's is causing chest tightness, splitting headaches, burning and tingling pain, numbness, and the worst nausea I've ever had. I threw up 18 times Sunday *forlorn sigh* But, if I take double the prescribed doses of all three anti nausea medications I have, plus 50mgs of benadryl, 10-15 minutes before I take the pain medication (swallowing it instead of taking it under my tongue, which in the end reduces its effectiveness by 40%...sadly) I am able to keep from throwing up...usually =/

It's not the best of situations. But I'm getting that med plus my blood pressure medication (b/c I'm almost always too high or too low with a thready and unpredictable pulse) in a patch that last one week and keeps a steady stream of the medicine in me without dips or highs in my blood, which happens when I dose myself 3 or 4 times a day. Hopefully they should help and reduce the many terrible and increasingly debilitating side effects. I'm almost completely bedridden as it is....I don't need my pain meds virtually poisoning me on top of that... =( *sigh*

So there you have it...the first major piece of the puzzle. Now for more "good news". My doctors are still urging me to do electro-convulsive therapy to help reboot my nervous/electrical system/brain....

But $50,000 out of pocket for multiple induced seizures that could permanently damage my memory (and almost definitely wipe most of my short term memory around the treatments) and increase my risk of death for a "simple reboot of my body's computer" is not something we're willing to do....yet.
Lucky me, eh?

Then comes a report on my actual body's condition.You see, my digestive system is so shot from the lead poisoning that I'm not getting many nutrients at all from ANY of my foods, so I may have to go on a completely organic, raw fruit and vegetable juice diet, then the same only pureed, and then whole (but still the same raw fruits and veggies). Then I'll start an extreme alkalizing diet...otherwise I'm NEVER going to get better. But that's just one piece of the puzzle that is me, and that has all my doctors somewhat or completely stumped....and I HATE that feeling...I do I do.... *sad face* So your prayers in that area are more than welcome, my friends.

I may start up IV therapy again...and we may go to dialysis (cleaning my blood in a machine by siphoning it out of my body and then pumping it back in after it's cleaned) if my liver doesn't start healing, and if the keilation to strip the lead out of my body doesn't work....

I'm more than a little bit of a mess right now, and am finding it hard sometimes to keep upbeat and happy. But I'm trying! God provides in all things, and never gives us more than we can handle, never abandons us, and never gives us that which will not help us grow into who He wants us to be, and who we were MADE to be.
So I'm counting my blessing and thanking God that He saw fit to mold me so much so soon. I'm hoping that means he has big plans for me, and that I can impact people with my life, even though it means being behind in school.

And now, I'm here. Today. Still struggling, and now finding it harder and harder to keep a smile on my face, but yet finding that God's grace is enough yet again, allowing me to not be as damaged by setbacks (both emotionally and physically), and to see hope for the future.
And I am sooo glad that you all are a part of that future.
Thank the Lord for His great mercies!

I'm sorry this has been such a long update, but it HAS been a while, and I think that explaining all this over and over would be a bit taxing *chuckle*.
I'll be praying for you all, and praying that God shows you His Love and mercies as much as He has me this past month.
Our God is a wondrous God, is He not?

In Christ, In Hope, It triumph over life's Trials, I come to you. And in Christ I leave you.
May you all find that to be the case in your life.

Yours forever,
---i.e. "Rae and the Sunshine Band" =D


Mikaela said...

Thank you for the update, Rae. My sister suffered from an undiagnosed condition for three years. It was nowhere near the scope of what you're facing, but I know how frustrating that time was for us of searching and never finding an answer,even after dozens of doctors and meds. I'm sure hundreds of doctors and meds is more accurate for you, which is why I can't even begin to comprehend this trial, but I am lifting you up before the throne--before our Lord Jesus who does know completely.
Thank you for your honest but Godly attitude!

Amy said...

Hi Rae! Sorry if I haven't talked to you in a VERY long time. I'm not very good at expressing myself, but I would like to leave one comment:

I do hope you are feeling better!

Take care,

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