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Saturday, August 14, 2010

Friday the 13th and I'm at the Doctor...WHAT!?

Friday the 13th...the day of my appointment with Dr. Rodriguez. As always the love of my life drives me to Mobile for my appointment. Now before this I knew that I would be going to have lots of blood work. Dr. Rodriguez and I had talked on the phone after my last hospital stay about possibilities of other autoimmune disease. What a lot of people don't know is that autoimmune diseases sometimes decide they want to pile together. So if you are diagnosed with one you should always be checked for others.

So we arrive at 1. They take my blood pressure and it is 128/78...which is high for me because my normal is 80/60. I was in pain and very nauseated at the arrival. In the waiting room I placed my head in Andrew's lap.


so first is first. I told you my blood pressure. Well Michelle checked my pulse and when she went to she noticed my hands were very clamy. Now get this I was super cold but my feet and hands were sweating. This happens a lot and I never knew why. After she is finished, Dr. Rodriguez walks through the door...he shook Andrew's hand and came straight to me and gave me a hug. I hugged him back because there was so much bottled up. I love Dr. Rodriguez and what he does for me, but as you all know I get frustrated with him.

He always starts with asking me what is going on. I immediately got emotional and told him see...my face had already inflamed and was red and I was like just wait my chest will break into hives...at that moment Andrew said "it already is". So I explained the never ceasing nausea and pain. How it hurts when I have a bowel movement. How it feels that someone is sticking a knife up my booty and how one morning I couldn't breathe because everytime I took a breathe I couldn't because my stomach would spasm. (so pretty much I was hurting in my stomach to breathe). He listened and seemed concerned...this time I wanted to make sure my point was heard...now for those of you that know me I am sorry for this next part. I hope you don't think any less of me but I was so upset and in so much pain it came out...

he looked at me and I started bawling and said "Dr. Rodriguez I FEEL LIKE SHIT!" I started crying harder and was like "You know how much I love Jesus and you heard me...I fell like s-h-i-t!" I could tell that he could see it was hurting for me to say it in those words and for me to be in the emotional and physical pain I was in. I then continued "I was praying and talking to God on the way up here asking Him to give me the words to tell you HOW BAD IT IS! Dr. Rodriguez I am nauseated to the point I CANNOT MOVE OR SPEAK!" I cried and tried to gain a little composure and started again "I don't know how to make you understand...I'm not like all these other Crohn's patients...I'm not just nauseated Dr. Rodriguez...I couldn't talk to my mother the other day because I knew I would throw up just from talking!"

You all it gets to the point that I have crawled to bed...not talked to people...just layed on the floor...it's like a robot who just shuts down...

So we started talking about signs and symptoms of the Crohn's and when they get worse...I told him right at 4 weeks was when everything would start getting worse

At 4 weeks my body begins rejecting and needing the Remicade...after I eat my body wants to throw up anything I have eaten so I have to spit some and then fan myself to keep the food down...every week after gets worse until I get to like the week of treatment and the throwing up begins...

So we talk about Remicade...he started serious...he said he was afraid that possibly I was building an antibody against the Remicade. I just looked shocked "I thought you said I could only build it if I quit taking it and thats why I was on it for life" He came back "I know...we all did but now there are articles saying that in some of the autoimmune cases it is showing building antibodies sometimes just against it for no reason". Well that was bad news one....

Bad news two...there is no way I can have Remicade every 4 weeks...no way you can have those infusions that often. Medically not permitted and definitely not by insurance...part good news - he is ordering for the Remicade to be 10mg/kg instead of 5mg/kg...so that will be double the dose...instead of 3 vials...I will get 6 vials. Also instead of getting treatments every 8 weeks...we are working for every 6 weeks...now only problem with this is sometimes insurance wants to step in and say no. So what he has to do is get enough evidence to fight and say SHE HAS TO HAVE IT. Dr. Rodriguez will get it and I have faith in him just because if I don't get it raised...I WILL build antibodies and yall these treatments are my LAST OPTION!!!!! WE NEED THIS!

So next is next. "I have been mad at you Dr. Rodriguez" Him- *he smiled* "I know this you told me already." I laughed and couldn't help not being mad. I then asked him what the heck was I supposed to do about my severe pain since he doesn't prescribe narcotics...I told him I was like "Dr. Rod if I didn't have Dr. Rider giving me the dilaudids...I would be dying...I said what would you do..." He then went into the same thing as Rider and was setting up talking to one of his fellow doctor friends who is a pain management doctor. He was going to send my case in and get an appointment set up with him...

So after this...this is where it gets serious. So he tells me of this new test that is out for people with Crohns...I don't even know how to spell it...but it is called the Premethius Test.... :(

Premethius Test = my prognosis (who knew crohn's patients had dang prognosis's...well I do)

So it will show what will happen to me in 20 years...the rate at which the disease will worsen...the rate at which it will attack my body...the damage it will do...when the Remicade will quit working...when and if we will have the dreaded surgery...and just well you know...

After he explained I just sighed and said "Dr. Rodriguez...why do we want to know...we know it's not good...

he wouldn't even look at me....that part hurt more than anything because he knows as I do that even putting in faith and even believing medically it's not bright...

Now for those of you reading...don't think that my faith is not strong...believe me...it is or I wouldn't be writing this 8 months later not crying but feeling stronger and more ready to fight harder. God and I have talked and He has shown me that He wants me to carry this burden and put my trust in faith in HIM so that others can see that HE IS THE ONLY WAY!!! yes it is a burden but HE CARRIED THE BURDEN OF THE CROSS!

Back to story....I forgot to talk about clamy...he brought it up and I rubbed my sweaty hand on him lol...he was like oh my...and then I was like FEEL MY FEET...he was so silly and jumped back and made an icky face! :) That is why I love him. So he felt and they were ice cold and sweaty. (clamy)...he then had me do a test...forgot the name I know bad nurse allison...I flexed my hands down and put my wrists together...he told me to tell him when I felt something...I asked what...he said anything..I was like "I know what you are doing" (but actually had forgot)

After a minute I said "ow..my wrists are burning" he nodded and told me to keep doing it...few more seconds "my fingers are numb and tingling" few more minutes....he told me to stop and flipped my hands over...fingertips were purple...Raynauds Phenomenon....

I told him hey I KNOW WHAT THAT IS! I then said you look at me...He laughed and did and I said I know what you think I have Mr. because I have medical books too...he laughed again and said what? and I said the dang lupus...he said no mam! I got very excited he didn't think I had that...(ps my chest is still in thousands of hives) so I said...be honest come on what do you think I have...

so now we are thinking along with Crohn's...Rheumatoid Arthritis and Scleroderma...both chronic autoimmune diseases as well. Now all of you know I have complained of hip, back, knee...just all the joint pain. Well joint pain is associated in bad cases of Crohn's but with mine being so widespread it makes sense. You will have to look both up but I have every sign and symptom of both. They also both run with Crohn's very easily.

So...I asked why it was so important to know...he said well you need to treat everything...if everything gets treated then it might possibly relieve one of the others and help treat them. He gave me an example:

"Allison what if we had rheumatoid diagnosed but not Crohn's...we would be treating joint pain and swelling and be missing a vital disease that would be worsening the rheumatoid and worsening the Crohn's..."

That made plenty sense...so we ran probably like 8 blood work tests...lets just say my arm was hurting from blood being drawn.

He then layed me back and palpated my intestines...I kept spasming against him and he was like quit moving...I laughed and said I can't help it...its my body...he just laughed because he knows with Crohn's your body contracts with the intestinal spasms...

He told me that along with raising the chemo and shortening the time in between doses...he was ALSO PUTTING ME BACK ON THE IMMUNOSUPPRESIVE PILL! I will have no immune system lol which is good though because that is what is killing my body.

Also...I told him about the contract I had signed to get my bachelors in nursing and told him they said I could cancel it since my medical condition was not well I just had to have a written letter and documentation of my diagnosis and prognosis...I was afraid he was going to go back and be like you weren't supposed to quit nursing and then I was going to freak...

I felt like a weight had been lifted...he was upset that I was in a contract with it...he didn't like that due to stress factors that can trigger me and he knows that nursing was out for my health so he was like "you just let me know when I need to send, where, and what all I need to say and we are GETTING YOU OUT!" I felt like he was my hero right then!!

Also...he wants to do the promethius only on me and one other girl...with our cases being not so wonderful he is doing us first as the little test piggies...he said it has been proven very accurate but it costs 600 dollars...he wants to make sure insurance is going to cover...because I mean heck with this disease everything is already expensive...

So...I wrote this without crying once and I am very proud of myself for that. I guess that means I am starting to deal with that diagnosis and all that bitter-sweet information...

So now I'm asking for prayers...to be honest we are banking and hoping that I do have the Rheumatoid and Scleroderma just because that could be a possibility nothing is getting better because there are more diseases that are all just feeding off one another.

So please pray that whatever needs to be found is...don't pray for it not be there...just pray that GOD'S WILL, WILL BE DONE!!!!! I want HIS WILL! (whatever it may be)

I love you all and apologize for the length and for the rawness and for the one bad language part but I want you all to know everything uncut and true! I love you all very much!

Please also be in prayer for my sweet friend Kelly in Georgia...she had been in the hospital with her Crohn's for over a month...I haven't been able to contact her much and be there for her as much as I would like because I myself have been a mess! Just pray for her and God's will for her life.

I LOVE YOU ALL!

4 comments:

  1. i cannot tell you how many times doctors have told me that they thought I had RA and every time the test came back negative. It is just so hard of a disease to to diagnose sometimes...your body has to be in the middle of an active flare up for the disease to present itself through tests. I know you must already know that...it's just so frustrating to think that you may actually have, but can't technically be diagnosed. & Yes, their were time where I just prayed that I would have RA...because that would explain all of the BURNING and INFLAMTION in my joints! I hate when my joints become so swollen and they feel as if they are on fire!...worst feeling ever Their is no pain med that could give that kind of pain any relief! ... I could go on and on...BUT I just emailed you VIA FB and I hope that you will call me tomorrow...soon! I miss you so much!
    -Love,
    Kelly

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  3. Kelly! I know what you mean. We are thinking possibly I might be in an active flare with it though because my back is just on fire and Andrew has to pop it like 3 times a day when I'm with him...it gets to the point where I can't bend up. So he is really hoping it comes out so we can get on anti-inflammatories and help calm that down...like my body shows that it flares...my cheeks were so red and my body was in red splotches...and like I said chest in hives. I sure do hope its in one so it can get treatment. I know you wish the same for you as well!!! I know you are going through the same crap I am and it gets so frustrating because like this time...I see that it is not only hurting me and putting a block between my family it is also affecting andrew and I and also it is hurting my doctor...bless his heart he is trying everything. But I LOVE YOU! and something will happen for both of us in HIS TIME! Love you girl!

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  4. Jamie! I was impressed to. I think it was just so much information and I wanted to make sure I was relaying it 100% that I had to think so hard while typing LOL! I know you are continously praying and your texts in the morning always brighten my day. I just woke up a little bit ago...finally got to sleep in one day...got sick last night...and woke up to some tummy spasms...so I'm about to take my pills! I love you girl and thank you for everything you do!

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