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Wednesday, February 22, 2012

Dr. Hecker Appointment - Watch, Wait, then Plan

I can't believe I am doing two posts back to back! It's been so long since I have done that! BUT with the Miracle post, the big appointment today, and all of the sweet responses to everything that has happened...I know that it was important to let you know what was said at the appointment with Dr. Hecker.


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First of all, I want to say thank you. I want to thank you for your support, your love, and for believing in me.....most of all thank you for your PRAYERS! I know the Lord thanks you as well. No, I am not speaking for Him...but I KNOW in my heart, this is ALL a part of His plan. He has told me and shown me this...so for you to pray and support me through this journey that He and I are taking together...I know He will bless you for helping bring honor and glory to HIM!

I have known since I was 4 years old that the Lord had something big in my future and in my walk with Him. I have had my visions and dreams since that age and have always felt His presence so strongly since then. At times I get a look into what it is, but I never get the entire picture.

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As most of you know from older posts, as a child I was healthy, but had strange/odd/freak signs and symptoms. From wearing knee braces on both legs, joint hyper-activity and pain, to weight loss, stomach pains, oh the list could go on and on. Like I said, the Lord told me that He was going to use me in a mighty way, not for myself, not for my glory, BUT for HIM...for HIS GLORY...for HIS KINGDOM! When I was younger, I didn't realize that all of the odd health issues would possibly connect, but as I got older He slowly began revealing to me that this sickness and disease is HIS plan. That from this is going to come something far beyond my comprehension.

People say "the Lord needs to heal you", "you need to have faith He is going to heal you and He will" "you need to pray harder", along with many other things. To that, I have to say FIRST, Lord DOESN'T need to do ANYTHING we want Him to! It is not about how much faith you have, how much you pray, how much you do this or that...it is about His plan and will for our life. If we understood everything in the Bible, understood His ways, thoughts, and all other theological things, then why would we need Him...we would know it all! That is what FAITH is...NOT knowing everything, yet still BELIEVING that He is there and He knows what He is doing!

As His word says is Isaiah 55:8, His thoughts are not ours, neither are His ways our ways...He then goes on in verse 9 to say that His thoughts and ways are GREATER than ours! Our trust and hope needs to lie in His hands....our worries and concerns need to be laid down at His feet!

Yes, at times, I cry to Him and ask Him to remove this cup...at times I say that IF it is HIS will, to please take me Home. We are flesh and this is normal...who wouldn't long to be with Him? Yet in my heart I know that this is His plan...that through this He wants me to be as Job, as Paul and the "thorn in his flesh", as He when He took the cross for us. We can be strong in and for Him, because HE was STRONG for us! People forget that yes, He was still God, but He was in a FLESH body...He suffered, He had pain, He shed tears, and He asked to have the cup removed. He will understand more than ANYONE ever could begin to!

 The thing is, as Christians...we have to show others, that even through the good times and the bad times, our GOD is THERE and He is GOOD! We have to show others, that the only way to make it through the trials and tribulations of this life is with HIM!

I get aggravated when people take 1 Corinthians 10:13 and paraphrase, saying "The Lord will not put more on you than you can handle". It bothers me how they word this paraphrase! It is NOT that at all! It is not our strength that gets us through trials/tribulations/temptations...things DO get too much for us...to hard...BUT IT IS with HIS STRENGTH, HIS MERCY, and HIS LOVE we CAN  handle ANYTHING and EVERYTHING! So when you think of 1 Corinthians 10:13 and you paraphrase...make sure to give HIM the glory and not us...tell them "Yes we will have more put on us than we can handle...BUT WITH HIM, we CAN handle it...our STRENGTH comes from HIM"

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I am so sorry I am getting off on my preaching! I just feel His presence over me at times, and I can't shake it...I have to tell others what He tells me, I have to let everyone know that He is here, He loves us, and that if we YEARN for Him...if we HUNGER for His presence and His love....if we show and let Him know we NEED Him and want MORE of Him....He will INCREASE in YOU! Never settle with where you are in your relationship with Him! Always want Him more!

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Appointment  -  February  22,  2012  -  Dr. Hecker


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Dr. Hecker has been the one doctor who has fought for me harder than anyone else. He is a Godly man and a man that see the truth of what is going on with my body and health. He knows that the exterior is a facade and that the interior is a mess. He never gives up on me and always end the appointment with "well if your case was easy, if this disease was easy, someone would have already found it...what you are dealing with is a mystery, so we have to take our time...but we will find out eventually with eliminating what is wrong"


My appointment was at 10:45, so I wasn't necessarily the happiest little girl this morning. It is hard for my body to get going...between the joints, the muscles, oh well...I well just say with my body...mornings are hard. The Lord gave me strength, and Andrew helped as much as he could.

We arrived, and I was so jittery to see Dr. Hecker. I was excited to see him, because two months was a long time for us not seeing one another. I was ready to talk to him about some more sign and symptom concerns, tell him about new meds, but MOSTLY about the Chemo increase. I knew that He was going to be very excited. Not excited about how much more serious this made my chemo treatments, or how severe the anaphylaxis and side effects would be, but excited that maybe after a few treatments my awful case MIGHT JUST respond better - rid me of many of my disease symptoms...or even better possibly a chance at going into Remission for ONCE!

We got called back and now I have to tattle on myself...I get tired of all of my doctors harping on me about my weight...so I wore the thickest/heaviest pair of leggings I could find, the heaviest shoes I had, and a thick thick sweater dress, with my knee length pea-coat! Oh and add more jewelry than I would normally wear! I had a GOOOOOOD 7-10 pounds on me....BUT I did it :) I weighted 116...so I added my clothes up real well! :) My nurse kind of laughed at me...I was going to hold my purse too, but I knew she wouldn't let that one slide! So whoop whoop!

Dr. Hecker came in, and I think the room was filled with SMILES! It was so sweet because he gave me the biggest, most firm hand shake I have ever received, and it just lasted and lasted as we smiled at one another! So I began jittering away and he just smiled and chuckled at me! He told me I looked good and I gave him the evil eye. So...I will give you the list I gave him that I wanted to go over...our options, what he needed to know...our catch up list (with treatments your memory gets a little fried so I have to write stuff down now or I will forget)

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*Remind Dr. Hecker about my severe migraines and severe headaches.*

    - see if I would be able to take migraine medicine
      (with being on so many medications, you sometimes can't take other medications because they don't go well together, so that stinks and you have to see if certain meds will be compatible with your disease and other medications)

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*Tell Dr. Hecker about how the cold sweats/hot flashes have gotten more serious.*

    - My body during this hypersensitive times is getting worse. When I have the cold sweats and I get in a HOT shower to try and get my homeostasis in balance, the HOT WATER literally will go NUMB on my back...I can feel the water, but not the temperature....its very scary and not a good feeling.
    - Also...about the time when I turned on SCALDING HOT water (mom felt it after)...I didn't know and washed my hands under it, not feeling it was scalding. After I washed them my hands were bright red and puffed up with slight burn feeling. Mom then had me cut water back on to where I had it and she couldn't even place finger under.

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*Ask about Mayo and what he was able to tell them/do?*

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*Tell him about my medicine to make me eat.*

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*Show him the salmon skin rashes on my arms.*
  
     - most of you have seen my Erythema Nodosum picture - which is a SEVER complication symptom from Crohn's and a few other Autoimmune Disease, but it only shows in Chronic and Severe cases...well the rash on my arms is not pustules not ulcers...they itch slightly but are like little red spots clumped together...almost like a little petechiae round cluster. (You can google petechiae to see what it looks like) He has already seen my chest inflamed in this rash...I look like a red chested monster!

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*Ask him about Adult Onset Stills Disease.*
  
      - On my last post I wrote about the Mystery Diagnosis case. She had this disease. Dr. Hecker and I have said that this is a big candidate for the other disease that is killing my body. The thing about this disease is that there is NO TEST OR PROCEDURE to diagnose it.

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*Tell him about Remicade Treatment Dosage Increase. (From 5 mg/kg TO 10 mg/kg)*

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Now I will go over the answers that he gave me for the topics - and yes we had a good hour long or little over hour appointment - and it was an amazing appointment because....just because the Lord is good and Dr. Hecker is a Believer

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*Migraine Topic*  -  This was a bummer. He said that there were many migraine medicines out there, but the reason he never gave me a prescription for one is that the migraine medications and pain medications do not mix. If anything they are like oil and water. He said to take the migraine medicine I would literally have to be off of all and any type of pain medication and that would NOT happen. He said with as much pain as my body was taking daily, the pain medication is the number one thing I need. It actually sometimes can even cause migraines. I told him that when they are bad enough I take my pain medication because I literally go into these fits where I just jerk my head, hit it, cry...I go into a terrible state with them, so I have to take something. He said that was ok, but that pain medication actually doesn't take them away...it just weans them off, but that I have to do what I have to do. HE DID however have an option to try. He said that when I think I have a migraine coming on....immediately take one of my Phengergans. He said that the dopamine in the Phenergan would do a reuptake and possibly help and stop the migraine! :) Pretty cool huh? so for all you migrainers out there....take a Phenergan (anti-emetic (which means you take for nausea and it is supposed to stop you from vomitting))

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*Numbness that goes with Cold-Sweats/Hot Flashes*  -  He told me that he didn't like this and that it really scared him because I could hurt my self badly and could put my self into serious danger not being able to detect temperatures at times. He said that when we did the nerve study, the nerves reacted...but then he added that it was unbelievable that he stuck a 6" needle into my muscles from my ankle to my arm and I didn't flinch, have pain, move, NOTHING - and no...I had no pain meds that day, NO sedation, NOTHING! and you all know I'm skinny...no meat on my arms...imagine a needle sticking into dep muscle in your arm...crazy huh? He then went on to say that he still believes with as severe as my Autoimmune Disease is and the fact that there IS another one...I have some type of neuropathy going on. He said that is something that will take time to figure out...but we know there at least is a neuropathy problem.

What is neuropathy?  Neuropathy is a collection of disorders that occurs when nerves of the peripheral nervous system (the part of the nervous system outside of the brain and spinal cord) are damaged. Neuropathy can affect nerves that control muscle movement (motor nerves) and those that detect sensations such as coldness or pain (sensory nerves). In some cases - autonomic neuropathy - it can affect internal organs, such as the heart, blood vessels, bladder, or intestines.

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*Mayo Clinic* -  this part was a little sad, because when we saw one another last, I had wrote in my post that he was going to call them, tell them all about me, and try to get it set up where they would not run tests for months, but get me in there, let me stay there, and do everything within a few weeks so we wouldn't have to rent a place or stay in hotel...that way I could stay in hospital and mom could stay in hospital with me. Well...bad news is he said that when he tried calling, he just can't talk to a doctor. He said they said that I had to make myself a patient there. Then after I admit as a patient to them on the phone or online, THEN he could talk to the doctor and tell him everything about me. Again I told him the only way I was going is if he called and VERIFIED that I am not crazy and tell them he has seen all of my freaky stuff. I was like "Dr. Hecker...just please tell them that I am messed up and that it is a really freaky case"! He started laughing and said "Allison, I think if you show up at the Mayo Clinic, they already know that"! I just laughed...oooooh Dr. Hecker!

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*Medicine to make me eat* -  Not much to talk about. He just looked like he hated that my health has gotten to the point that its that severe.

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*Salmon rash* -  Again...not much to say...Im just a messed up case! He did say that WE were GOING to be on Mystery Diagnosis one day (he knows I get mad at that show because everyone gets fixed and not me LOL)! and then I was like....well you HAVE to diagnose me first with my other junk! It was just more laughing and trying to be positive!

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*Adult Onset Still Disease*  -  He agreed that it is still a big candidate for my other disease, especially the fact that I have EVERY sign and symptom, there is NO CERTAIN test or procedure to diagnose it...and it just goes together....plus I am right in the age range for when the first peak of the disease starts/happens. I will tell a little more about this below.

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WHAT WE HAVE BEEN WAITING FOR!

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*The Remicade Topic* - I told him about being hospitalized in January. How I was so dehydrated that they could not even get blood out of my MEDIPORT - he said he believed it. I told him about seeing Rodriguez and continuing to fight over a year now to get the Remicade increased. He already knew from before (me telling him) that Rodriguez said it was the insurance. Dr. Hecker along with all of my other doctors has been wanting the Remicade increased for a while now....just because it is our last hope with all of this as a treamtent option.

So...I tell him everything as I told you in the post, and it was like this big wave of excitement over him. He was so happy. He was like Allison, this is great! He said this is a PERFECT thing to be happening right now. He then said that if I have Adult Onset Stills Disease, it's treatment is the Chemo also (the Remicade treatments). He was concerned about me being on that much and worried about me and my next treatment. I don't think I can put into words how serious these treamtents are...it isn't putting a bag of saline up and running it. It is potent...if you look up...it is a type of chemotherapy...and the risks with that are big...the recovery is hard. That was his big thing...he was worried about me and my recovery...he was worried about if my nurse would watch me close, if she would know how serious this was....I told him Mrs. Rene was at one time a Chemo nurse so I'm sure she knew the importance and seriousness of everything. So then he gets excited again...he was like this is what we needed....he then found out that my next treatment was March 14...so he told me to call him in April and tell him everything that I'm feeling...let him what things were worse, what things were better, if there was a health change...EVERYTHING! He was like, Allison this will help us so much on your case. If it is most of your Crohn's that is doing this, then hopefully we will find out...if you don't get better with the maxed out does...then we will know we need to be getting to the Mayo fast. He then said if I noticed it helped some to...that we could maybe start getting diagnosed with the Stills since its only treatment is the few options with Crohn's and since I'm at my last that would be the Remicade....so two disease that need the same thing. Lord, if it doesn't work, I'm going to need some BIG donations to the CCFA .... just not for a cure, but to find more options for people that are in my shoes.

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So....a lot in one appointment. Some worries and concerns and then some excitement! it is so pitiful though when I get up to walk out...we give him hugs and then when we leave the paper on the table is soak and wet from me sitting on it...cold-sweats...I mean the paper is pretty much deteriorated from me sititng there...quit embarrassing, but he thinks it is unbelievable. When he performed some neuro tests on me, he had to check hand eye coordination and when he touched my hands they were like ice but were literally dripping wet! I guess it's like having a fish as a patient, LOL!

This post was an extremely long post, but I want to document as much as I can, and I want those that care to know as much as they want...I want you all to feel as though you are at the appointment so that you can truly experience this journey with the Lord and I! I know that was a reason for me starting this blog...the Lord and I were talking and I knew I wanted a way to put all my emotions into a physical way....I take everything and put it all into words...so it is a release. Most importantly...the Lord kept telling me....I want you to tell OUR story....so that is when I began the blog. I'm not sure if all of you know how to work a blog, but if you want to know the beginning of our story...scroll down my blog and to the right side of the page you will see BLOG ARCHIVE - you can click by the year and when you click the year it will show months....of course you can guess if you want to see how everything began you go to the eldest year and start with the eldest month. (not sure if that was correct grammar and I'm nuts about that stuff so excuse it...also excuse this entire thing, because after my appointment I got very sick and have phenergans mixed with percocets to fix a lot of pain and a lot of nausea)

Again, I love you all very much...your support motivates me, it encourages me, and it makes me fight that much harder! I will say it again, the Lord will bless you greatly for being there for one of His children He has called to the Battlefield for Him! To have so many of you read this and know my thoughts, feelings, emotions....I don't know...it helps...it helps that instead of just looking on the outside, you get to see what is really going on. God bless you all, you are prayed for, and loved so very much by me!


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Also, if yall ever have a question about something, or you want to know something a little deeper, just comment below...there is a box on my blog were you can post.....that way I can see it and answer. Always feel free to ask anything...I want you to know as much as you want!

2 comments:

  1. Dear Allison,
    ((sigh)) as I just finished reading all of this, I have to stop to pray for you...NOW!! ...and as I pray for you, I have to lift your Mama up in my prayers as well. I cannot imagine having to watch one of my girls go through all of this. Yet, it somehow feels like I am watching one of "my girls"...from a distance. :( Please tell her I am praying for her too.
    However, I must tell you that you continue to bless my heart, as I'm sure you do so many others, with your amazing faith in our Lord and Savior. Your faith, through this valley (that often times must seem endless to you)...you walk with such grace and mercy...giving God the glory for it all...and for that, I know, He is so proud of you. Keep on, keepin' on for His sake, and I will keep praying...every time He lays you on my heart. Love, love, love you, Sweet sweet Alli.
    :) mrs. dodi

    ReplyDelete
  2. Mrs. Dodi,
    I love you so very much! You have always been a blessing in my life, and have taught me so much of what I know! I always think about you when I get into deep Bible studies...those years learning and writng scripture really stuck with me. It taught me to appreciate every little detail in His word.....you are a big part of who I am today! so, thank you! As for mom, yes...it causes a strain between us sometimes, because she wants to fix it and she can't...then in turn she gets frustrated. There is a lot of frustration in all of this, but I like I said...He knows that this is what needs to be right now! I love you and thank you for all your prayers, thoughts, and love! You mean so very much to me and my family!

    ReplyDelete