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Saturday, September 10, 2011

Erythema Nodosum - Forgot to Post and Place Pictures

I was looking through pictures that I uploaded from my camera to computer tonight and was placing them in a new file for September. I then went back to my August album to scroll thru and look. As I was scrolling up, I saw the pitiful pictures of my legs and immediately was disappointed! Why? Because I ALWAYS try and post pictures with my posts if able!

I do this for a few reasons. One reason is the same as I had posted earlier, I want y'all to  experience ALL of this with me! Christ has called me, just as He did Job! I want you to feel what I feel and see what I see...because as my brothers and sisters in Christ you also are going through this with me! As prayer warriors, supporters, friends, etc.! We are a body as He tells us! It is important to me that I hold nothing back from you - just like a testimony! So know that I love you each very much!

Another reason I like to place pictures with my posts - I CAN NEVER forget! I wish I could have a picture for every post, but that is impossible! Some things you just can't photograph....you have your subjective symptoms and objective symptoms. Subjective symptoms are there, but others cannot see them, feel them, hear them, and so on. The way you prove a subjective symptom is through something objective. Example for ya:

*Pain - My doctor can't see my pain, or feel my pain, or hear it, so it is subjective. He can take my blood pressure however and see that it is elevated above the roof...that in turn takes my pain from subjective to objective.

That is why blood pressure, temp, pulse, xrays, blood work, etc is SO vital with the medical field...if something is subjective, you HAVE to have a way to turn that SUBJECTIVE into OBJECTIVE! I know that was a nursing lesson, but I'm trying to show how nice and how important it is to have EVERYTHING that IS objective documented! That way YOU and I can ALWAYS have proof and never forget!

*So inside tip for my readers...if you EVER have anything unusual with your body...ANYTHING -swelling, discoloration, mole, capillary, bump, bite...TAKE A PICTURE! If it goes away you will have the picture and no harm done!  BUT what if it comes back!? You will be ahead of the game...you will then be able to continue monitoring - as you continue taking your pictures you can see how the problem is progressing and how it is changing in shape, size, etc.! Just felt led to share this and tell yall! Your body is YOUR body! Always be in tune with every little dot and line you have! You are your BIGGEST advocate! Please do this for me...promise you will for me*

So back to that reason...as I said you will NEVER forget! You have that visualization in your mind...not only for you, but also, to take and show your doctor! I have written before that these treatments really do mess with my memory so the pictures are a life saver at times!

I guess my third reason for posting the pictures with the posts, is so that if I meet another doctor, I can always scroll back through and write down things that I have forgotten about and print the pictures out! My blog has actually come in handy a few times for some of these new doctors, so it's been a blessing for me when it comes to my memory!

So...back to my legs...in the last post I wrote about me having Erythema Nodosum, and I had also written about this problem on facebook asking for prayers!

You already know that it is not a good sign of Crohn's Disease - doctors raise their eyebrows up and think to themselves "ohh....you are to that point...". A little more about Erythema Nodosum and Crohn's - First, many CD victims never experience this outbreak or even have a clue it exists/can happen with their disease. Second, it only happens to CD victims that have a very severe case and even with that the % of having an outbreak is very low. Third, it is an extraintestinal symptom, so you are dealing with ANOTHER symptom besides all the many digestive system ones!

From reading the last blog post, you ALSO know that this symptom/condition happens with Sarcoid - the disease that we are almost positive I have! After the outbreak I thought it was so ironic...the first time I saw Dr. Hecker he had asked if I had ever had an outbreak/rash of bumps/nodules on legs. I told him "No", and within the next few days *BAM* it happened. Now yes, I will say as I always do...and yes it will sound funny saying it....but "God is GOOD!"  It was just another symptom to validate and help get us to the sarcoid, and can I say RIGHT IN TIME!

Moving along to the outbreak and duration. From the time the first nodules appeared to the time the last one was fully healed, that total length - start to finish was close to 4 weeks.

The evolution of Erythema Nodosum - The first bumps/nodules appeared, and I guess with me being a nurse and knowing my body, truly an alarm went off in my head. Most people would have thought a mosquito bite, and that is EXACTLY what the first nodules will look like! Around the nodules are perfect red borders that surround them completely...so you have a red inflamed circle, with a raised little bump in the middle. The first physical sensation dealing with the outbreak was PERSISTENT ITCHING! I promise...I wanted to take a bristle brush and just rake my legs with it! Now not all were the same, it was as though they went through stages. For many of the little mosquito look-a-like bites, if you pressed them, it LITERALLY felt like a marble under the skin. Hard as a rock and very painful. Some places were pustules *you could actually see the pus through the bump - they were also PAINFUL and itched the most* Now the ones that I said were in the latter stage, they actually had gone from nodule to pustule to actual ulcer *if you have had an ulcer in your mouth, it was just like that but much smaller...they did grow a light scab, so that was nice that it just wasn't openly exposed for long*. The itching would become terrible when new ones would appear, and the pain would not stop because it was present with all the inflammation and knotting of my tissue.

Out of that...the funniest thing I can remember was not being able to shave my legs! My legs were itching and hurting so bad one night, and I wanted air to be able to get to them because with inflammation that in depth...your skin is on FIRE! So I placed my legs in Andrew's laps and he pulled up my pajama legs so the air would hit them....let's just say I had BIG FOOT LEGS! Come on now...I couldn't shave with all these scary little things! I poked my lip out at Andrew and then smiled and said "SOOOOOWWWWWY!" He is the sweetest and just said "it's ok baby!" what he was really thinking was *Oh dear Jesus...make these things better...her legs look like mine!* LOL!

I only took pictures I think three days, and they were back to back! I wanted to document better, but along with other reasons, my camera has just about bit the dust, so it won't focus very well....so the pictures aren't what I was hoping for, but they at least showed red dots! I was hoping to be able to differentiate between the nodules, ulcers, and pustules...I can when I zoom and scroll up and down looking...but I highly doubt you care to scope my legs that nicely!

Anywhooo....Dr. Rodriguez wanted to start me on leprosy medicine if they didn't get better, but as you all know HE NEVER CALLED BACK when I called him the second time! He was *soooo worried* when I called that first time, "start Benadryl immediately...we HAVE to get your body calmed down, REST....do not do much at all...THIS IS SERIOUS" *a bunch of yadda yadda if you aren't going to call me back and they already were ten times worse* Most of you already know he and I have a love/dislike relationship anyways!  Ok...now to the pictures!

One more thing - I was VERY disappointed, because I was hoping for complete healing. That most of the nodules would just go away nicely! My legs definitely are scared now...to the point the doctors were examining them and looking at where the inflammation was all located! I would put cream on them, but these are not the type of scars you can put Mederma on...they are dented in the skin and darker than surrounding the skin! *booo* I could be polka dot legs woman!? Does that sound like a super hero?


Day One - You would expect maybe just 1 big one for the first day or two!

Of course not me, I'm ALWAYS a record breaker, I HAVE to go ALL out...lol!


Day 2 : ALREADY popping up everywhere! This is my Left Leg in this picture
which was the worst between the two legs.Remember to try and look close -
if you see places that are circular and white,that is where a new one will pop up!
 When I would go to bed, I would look over legand see where I would have my
marked spots, and sure enough, they would be there by morning.


Day 2 : Just a close up, so you can only see a few. In this one they
are mostlynodules, but I can see two pustules that were ulcerating.
The one at very bottom left and the one up towards  mid right.


Day 2 : This was the only up close pic I was able to get that was kind of focused.
If you look to the far right. That one was VERY painful. Look very closely and you can
see how the center of the nodule is shiny and is raised - it was pustule, along with the
one to the far left. These two turned into fairly decent ulcers.


Day 3: For only three days, I couldn't believe how many I already had!
I'm sure you can visually imagine just how bad after 2 - 2 1/2 weeks!
In this one you can even see more white spots where new ones were coming up.


Day 3: I wish I would have continued to take pictures to show the progression, but between
the itching, pain, and continuous multiplying of them - not to mention after 1,2,3,4 weeks
of NO SHAVING....I was somewhere between frustration, embarrassment, and just
EXHAUSTION! Like I said, wish would have taken more, but it's a-okay with me!



Day 3 : OH MY GOODNESS! So I was about to post, and was like hmmm...
My brain, forgot, as I was warning y'all about. Tada, I did have ONE picture of
an ulceration with the Erythema Nodosum. This was on my left? ankle.

Friday, September 9, 2011

When Not So Good News = AMAZING News

Wednesay - September 7, 2011 - The day after all my appointments!

So I am finally out of bed! I know many of you probably read my status this morning that I had posted VERY early! I just could not sleep with all the inflammation. As you know with inflammation comes pain that is unbearable, but also with inflammation comes an awful burning throughout your body. Along with that my stomach was in very bad shape...it made non-stop gurgling/sloshing sounds and continuously spasmed. I kept praying that somehow the spinal block (which is done for pain in abdomen caused by Crohn's) would just miraculously kick in! (It takes a little while for a block to kick in and do it's job) Even with all of this, there was more - my neck, back/spine, hips, knees, calves were all just so restless and in pain!

It was to the point last night that every time I would breathe in and out, my abdomen from flexing and having spasms HURT....just to breathe HURT!


I finally maybe got 20 minutes of sleep and woke up thinking it was a nightmare, because in the dream I was still feeling and having the pain. When I woke up...it all hit me like a ton of bricks that..."Ohhh Noooo I was ASLEEP!" I was so frustrated because I was actually asleep and had woken myself up to get rid of pain that was already present in the dream! You expect dreams to just take away all that stuff! I actually had taken a pill before I got in the bed but it just wasn't helping. I think with the inflammation right now it's hard for the pain meds to fight against the pain and then the pain from the inflammation. We are just going to have to get some help from an anti-inflammatory once we can get some of this other stuff diagnosed!


So now moving along to what I am going to call my prelogue for this post! This is just to explain why I am not giving up until we find ALL that is attacking/killing my body! Most of you that have read since the beginning know this. For those of you that don't...I have been fighting many signs and symptoms (s/s) since I was an infant. It was always a dead end with everything so my parents and I had no other choice but to just pretty much give up...what do you do with no help, no clue, and nowhere else to go or turn to? We thought when the Crohn's was diagnosed in 2009 that we had found the reason for ALL my problems! Soon after I realized that NOT all of the s/s fell under my Crohn's and were in fact coming from somewhere different. *Now after getting diagnosed with Crohn's it gave me my gut back - meaning when I KNOW something is WRONG....I KNOW - no matter the dead ends, no help, no clue, nowhere to go...still going to fight* So...with knowing that I was right ALL THOSE PREVIOUS YEARS...I wasn't just going to slide the rest of this under the carpet. Especially now since I am to the point I literally can hardly do nothing. For some of the other s/s that I knew were coming from another disease and did not fit with the Crohn's...most of them had started back around 2005!  (Dr. Hecker had actually brought that to my realization at the visit)

Now when God got me to the Crohn's diagnosis, He renewed my mind and strength that there WAS SOMETHING wrong all those years and that there still is more that needs to be found. So with that renewed strength I know I can't stop fighting and searching! I truly know that ALL OF THIS is His plans! This is my burden and journey to carry and give ALL PRAISE, GLORY, and HONOR to HIM! That is why I have been so persistent with these specialists and continuing to get them to send me to the next one that they think is more certified to deal with all of this! So now moving on to the specialists I saw Tuesday and what they found/said.


Yesterday:
Dr. Scroggie - Rheumatologist - 9/6/11 - 8:20 AM - Daphne Diagnostic and Medical Office

Andrew and I arrive, and of course the devil was waiting. I had a nurse who was just absolutely awful. Not only was she rude, but would make sure to say things out loud that were directed at me! When I fill out my update papers, I take them very seriously...not only as a patient, but also as nurse. I guess I wasn't moving fast enough and she made a comment to me OUT LOUD in the PUBLIC waiting room, in a very snappy/rude tone asking "Are you finished yet?" followed by "I am just NOT going to get behind today!" Number one, if I was finished with the papers, I wouldn't still have had them! She continued her few remarks and if you know me you know that I was not rude, but I made sure to let her know that I heard her and also made sure to say some things out loud for HER to hear about Jesus *He says turn the other cheek*!

So we get in the room and one of my friends from Jackson was working there! She took us back and got my vitals, and for some reason I just BROKE DOWN! Here I am, keeping a positive attitude through all of this, trying to fight this physical battle, and coming to my doctor in hopes of us finding what else is attacking and ailing my body. As always I run into rude people, dead ends, and just the devil! I let some tears go, Andrew just sat frustrated at the nurse, and Alex gave me a hug!

Dr. Scroggie walked in not too long after. He went ahead and let me know that he peaked into my brain, spinal, and thoracic MRI and that everything looked "Good"! That immediately felt like a ton of bricks had LANDED on me! I mean....we just KNEW that we were going to find something and that we were going to get it diagnosed, and I was going to fight it like a champ.


When I heard "Good", you have to know why it felt like a ton of bricks PILED instead of LIFTED! He starts talking about this and that and all my problems and then comes over to assess my joints as always. Immediately he starts making his *not happy* noise and shaking head as he assesses and maneuvers them! He then says as last time that they are "over reactive, reverse/go backwards, and are too freely moving...not normal, and not good" He also said that these abnormalities will cause pain! After hearing so much, I just got frustrated and the tears showed up!

I just put it out there as I always do! I was like "Dr. Scroggie....I am losing it here! All of you keep saying that you know something is NOT right....that whatever it is, is NOT good...and it IS there! Well where is IT and when are we going to find it? I have been the one fighting through all of this and coming to each of you, and when I do, it's another dead end and another closed door." I just started crying at that point and he looked like he felt like the ton of bricks was now on his shoulders. I continued with "I just don't know what to do anymore except give up. I am to the point that I keep telling each of you that I feel insane, and then you each reassure me that I am not...but really I just need a check-in slip at this point!" I felt so bad because I knew that it was hurting him that I was that frustrated with fighting and not getting anywhere. He isn't the doctor that puts his hand on your shoulder and tries to make you feel better. He is the pitiful doctor that is just too smart...he doesn't know what to do, what to say, or how to act to show he cares! I really could just sense however that he was hurting for me! So he looked at me and said "You are not insane. We know that something is there. We have multiple s/s! He then said IF IT WAS EASY, and IF IT WAS NICE, we ALREADY WOULD HAVE BEEN FOUND! He then went on to say, that he knows all of this isn't easy, but I can't give up."

He wasn't sure what he wanted to do from there on his part...but he did say that he would be checking into Dr. Hecker's results and continuing to try and put things together. He did however bring up the fact that he didn't like Dr. Rodriguez not treating the Erythema Nodosum on my legs (the post I made about the red/lumped/nodules that burst and ulcerated all over my legs). He then went on to also say that he did not like that Rodriguez was not upping my treatment dose! He said that he has PLENTY of reasons to and needs to quit saying he doesn't (paraphrased). He then said that I needed to start physical therapy for joints/back and that he was going to write a prescription for that. He also said that he was going to set up an appointment for me to see another gastroeneterologist. He is hoping that maybe this gastro doctor will actually stay on my case, just not when I'm in the office and also stay on my case when I call about emergencies! (Dr. Rodriguez never called back when I called to tell him my legs had gotten worse - I had over 100 nodules/ulcers on my left leg and over 50 on my right - He said that first time I called that we were going to have to go to another last step and start me on leprosy medicine for the extra-intestinal s/s from the Crohn's).

So overview of Dr. Scroggie -

- Start Physical Therapy Immediately
- Start Lyrica Again
- See Gastoenterologist through the Diagnostic and Medical Center
    - to see if we can get Remicade dose up to try and get Crohn's handled just slightly because the rate
       I'm going I haven't been in remission AT ALL and I am at my LAST option
- He will still continue to work with Dr. Hecker and Dr. Nolan on my case
- He will see me in two months to do check up again
- Reassured that something is wrong and is there!


Dr. Hecker - Neurologist - 9/6/11 - 10:30 AM- Mobile Diagnostic and Medical Office

Headed to Dr. Hecker's office I was already down and discouraged and literally to the point of just wanting to cancel and go home. We got to the office and they took us in early. He came in the room and I started telling him of things that had happened since last time I had seen him. Last visit with him was three weeks ago or little over. I told him about the erythema nodosum, the worsening of the back/spine pain (which I had gotten one of my best friends Jordan to check since she is a massage...she had found that the muscles in the right side of back were so strained and tightened that they were pulling my spine to the right causing the left muscles to be weak and fatigued -which causes PAIN). Also...I didn't mention above, but I had told all the worsening s/s to Dr. Scroggie and I told him what Jordan had found with back! He agreed that she was in fact right and that along with that happening, he could see and feel muscle spasms in my back!

Now the last visit that I had with Dr. Hecker, he had specifically asked Andrew and I if I had ever had the skin rash/nodules/bumps on my legs. I had told him at age 13 I had a rash like that all over my scalp and the doctors had no clue what it was and treated it with 8 shots of cortisone in my head! So at this visit, when I told him that I had what Dr. Rodriguez and I were calling Erythema Nodosum...he was very excited.

After telling him the s/s and telling him that indeed after the visit the outbreak happened...I then went into another Allison talk/break down. I started with "Well I'm already upset because Dr. Scroggie ruined my appointment with you. He said that my brain, spinal cord, and thoracic MRI looked good." I then continued on with how I'm just so tired and hurt! Tired because I'm fighting with a body that literally is disabled...hurt because I feel as though I'm fighting this alone (yes I have the few that love me and are actually right behind me giving me that push but in reality....all these people that say they care...most of them don't! and so many of the people that act like they care...it's not as though they send you a card, give you a phone call, come check on you! That is another story, sorry for getting on that wagon...I'm not a person who wants sympathy and I SURE don't want fake either! It's hard to when people say "you look great"! All I ask is if people care, then care - have that empathy! For those that don't, just don't)! So back to me telling him how I'm "tired"....I don't even think I have to keep going with that...I'm sure you know why I am tired....s/s since infancy, then more s/s that started in 2005.

So I am telling all of this to him and then of course my tears as always come out! It was so unusual because while I was telling him all of this, he had this hidden smile! He never stopped me from pouring my feelings/frustration and pains out on him...he just sat there and was a kind and attentive ear...but still....that smile! So after the long speech...I gave out a long sigh...he smiled bigger and then took both hands and slapped them on his lap as though we were about to go off and start a game of basketball! Well....he slapped his legs because we were getting somewhere and getting a game plan FINALLY!!!!!!!!

THIS IS WHAT YOU HAVE BEEN WAITING TO READ AND WHAT I HAVE BEEN WAITING TO GET TO...well not what I want to get to as in the goal completely...but we are actually CLOSE to the goal!

So he went on to say that he was very scared that he was going to find lesion/s or tumor/s on my brain and he was happy to see that there was/were none. He then went on to his folder of results.

First - My Vitamin B12 was low. Not critically low, but it definitely needed to be higher. He said that we needed to get me on this immediately.

Second - He flipped the page and my eyes went straight to the BOLD BLACK NUMBER! The Blood Test Result of my ACE Level.

Angiotensin I-converting enzyme (ACE), an exopeptidase, is a circulating enzyme that participates in the body's renin-angiotensin system (RAS), which mediates extracellular volume (i.e. that of the blood plasma, lymph and interstitial fluid), and arterial vasoconstriction. It is secreted by pulmonary and renal endothelial cells and catalyzes the conversion of decapeptide angiotensin I to octapeptide angiotensin II.[1]

Now you know the definition of this enzyme in your body. As with every blood test there is a normal range. The normal range on his medical facility's panel said that mine should not be over 38.
My ACE was 79!!!

Now, I know as a nurse that, that is not good, but where I am at....I was singing Hallelujah in my mind! I'm not sure if Mom and Dad are to that point that they truly want more to be wrong with their child, bless their hearts, but I do know they are tired of no one finding what else there is....so where as I was screaming Hallelujah and Andrew was screaming Hallelujjjjjj I think they were screaming Halleluuuuuuu.

He shows me the results, shows me the range, tells me that is not good, and then follows with - "So we are looking at you having Sarcoid as the other disease or one of the other diseases" Without anytime to process, think, or ANYTHING...I immediately said..."I'll take it!" After I said this to him, I couldn't believe I had said that, but I was truly just to that point! It was kind of sweet, because he truly understood where I was coming from and had that smile as though *bless your heart I hate this for you, but then also that smile that he was happy for me that I was a little closer to closure*

Again he told me how it wasn't something good, but he was almost positive that it was one of the diseases I had other than Crohn's. He went on to tell me what else needed to happen:

- B12 needs to start
- Nerve Study Test   (still looking for more other diseases that they think are possibility)
- Needs to get Pathology Report from the surgery I had back in 2006?2007? when I had the post cervical lymph node removed
- Tilt Table Test (more than likely he wants to get done)
- Bone Marrow (still thinking he needs to do this - so we are doing other tests and this would be one of last)

He went over treatment options for Sarcoid...but there is a big problem for me and we are going to have problems if this indeed does get diagnosed! The treatments for Crohn's and the treatments for Sarcoid would wreak havoc on one another...so while both disease are at their worst right now....the Sarcoid could possibly get a little better but then in turn would kick the Crohn's into even a higher gear if that is possible! One of Sarcoids treatments to try and help is steroids...well with me having Chronic Fistulizing Crohn's Disease that would be a problem because steroids actually increase and cause Fistulas and Fissures to Fistulize. All of you know I have already had two fistulalectomies, and they were AWFUL! After surgery first time, I literally was right at cardiac shock!

Another thing we discussed is why Rodriguez didn't call me in to get a biopsy of my Erythema Nodosum. Rodriguez said something about it on phone when I first called him about the problem, but decided not to worry with it. Dr. Hecker was frustrated with this because Erythema Nodosum is not only a serious worsening sign of Crohn's, but is definitely a sign of Chronic widespread Sarcoid! It could have shown the granulomas we needed to give us a fast diagnosis! Also he was frustrated because when I had that surgery at Jackson (the post cervical lymph node removal - they thought then I had lymphoma or leukemia, I wrote about all of this in another post - all the things I have gone through) they should have seen in the pathology report something! Vanderbilt was the one to do the pathology report, so if something was there that was off they should have let it be known to the hospital and my team that did my surgery! So he wants to get the records from that surgery and see what the results of some of the levels were looking like then!

Moving along to show you how so many puzzle pieces will fit together with Sarcoid - still more pieces left over with that diagnosis, thus why they think even more diseases. They are thinking they might know what those are too, but aren't telling me anything yet.

Puzzle Pieces - Sarcoid would explain WHY....

I have had all the Lymph Node problems. Age 15 biopsy of lymph node under arm - thought lymphoma. Age 17/18 surgery to remove post cervical lymph node (side-back of neck) - thought lymphoma or leukemia. Ever since the surgery my lymph nodes have on and off continued to be enlarged....for maybe the past 3 years my neck hasn't been probably a day without at least 3 lymph nodes swollen in under chin, neck area.

My spleen and liver have been enlarged at times. These two organs are lymph organs. Sarcoid causes inflammation which can cause organs to swell, but sarcoid also causes lymph to build up. So with both organs being lymph organs....it fits perfect!

Joints (ALL JOINTS) are in so much pain and always inflamed. Why the joints went from just knees since age 9 to now being every joint in body! At age 9 that is when we found knee joints to have problems and I literally wore knee braces to PE all the time due to Dr's orders.

The red nodule/bump rash that all over my scalp (head) when I was 13 and had to end up getting 8 shots of Cortisone! (Was supposed to get 16...but I couldn't endure the 8 I got, and my mom couldn't take the screaming and blood anymore)

My skin is so sensitive and always itching, turning blotchy red, and feeling as though it is on fire! My skin literally turns red at times and if you place your hand to it...your hand will feel like touching a hot candle warmer.

So many times, they have thought cancer! Sarcoid is so close to Cancer because it Mimics it like an Identical Twin just about! Even the elevated ACE level is found in Lymphoma!

*There are so many signs and symptoms I have that fall under Crohn's, because although Crohn's is labeled as a Digestive Disease, people don't understand that it affects the ENTIRE BODY! But even with that, I have HUNDREDS of s/s and even though many can all fall under Crohn's and as having an Autoimmune Disease...it would be REALLY far fetched! When adding Sarcoid to the picture however, it takes up a lot of signs and symptoms and makes it a little more feasible! NOT completely feasible all the way, but MUCH more than what it was!

So we still have a little more to finish to get a diagnosis of the Sarcoid. We still have many more tests to run to rule out that there are not other diseases! Dr. Hecker said as Scroggie did...that if what I had was easy, wasn't serious, and was common - it would be fast and easy to find and fix. BUT with it being something that is serious, chronic, rare, complicated to find and diagnose...it takes time and patience.

He also went on to explain that even after getting the Sarcoid diagnosed, we cannot stop. He said that you can have a list and say "is it this, is it this..." but that doesn't put you in the clear...even more important is "WHAT IS IT NOT?" Like I said...still more puzzle pieces that need to find their picture!


Now to tell you how AWESOME God is and to also tell you a BLESSING!  I had wanted to see a neurologist pretty early in this game! After my second Crohn's surgery...which was December of 2009...my most dreaded symptom started! I talk about it all the time...it is the symptom that makes me bed ridden for days and literally just makes me feel like death - I can't move or do anything - the freezing cold sweats! Well as these kept getting worse and the hot flashes that burn my skin happened with them...I was trying to use my nursing skills and kept thinking *I need to see a neurologist...I should NOT be cold and sweating to the point I soak through clothes, sheets, mattress, and comforter. I also shouldn't continue to have stabbing tingles and chills down spine with this and have 24/7 goosebumps. I kept saying this is a neuro problem...it is something off with my regulation of temperature and homeostasis*

Well...needless to say I would get sent from specialist to specialist, stop, start again, and then get nowhere. Well then two months ago...one of the doctors that Dr. Scott led me to was Dr. Nolan - the infectious disease specialist! He was the one doctor that just I could truly sense how much he was concerned and worried for and about me! He tried harder than any other doctor I have seen to find and figure out what was wrong! He was the one that literally drew so much blood that after they finished with my port I was passing out and my nose was dry! He was so hurt when he told me he had found nothing for me....I had told him I didn't know what else to do and I only had one doctor left that I had wanted to see, but there wasn't any use and I was just finished. He asked what specialist I had though about and I told him a neurologist. I told him my reasonings and he agreed. He told me that I needed to exhaust EVERY option I had....he said even if they came up with nothing as well...at least maybe that would give me closure (that's when we were saying that I definitely had something but maybe it just hadn't been found yet in the medical field...just like Crohn's wasn't known about 20 years ago...no definition/option/nothing). He was the one who pushed me to keep with my last option, and was the one who sent a PERSONAL letter to Dr. Hecker and CALLED Dr. Hecker PERSONALLY to tell him about me and his concerns and just asked him to help me as much as he could!

Now just put this together....I WANTED TO SEE NEUROLOGIST FROM BEGINNING. Ended up on my list as LAST SPECIALIST ON LIST. Then...I was NOT GOING TO GO....I confided in DR. NOLAN OF THIS....DR. NOLAN PUSHED ME TO GO AND GOT ME THE APPOINTMENT WITH DR. HECKER.....and now the NEUROLOGIST is the one who is GETTING SOMEWHERE! So...this point shows GOD IS GOOD...GOD IS GREAT AND THAT WE ARE ON HIS TIME NOT OURS! Now...even SWEETER and for the precious blessing that will make you say AWE - this is the part that I left out of  the building crying because I felt so much compassion and love for a change by doctors...

So I told Dr. Hecker how I wasn't even going to end up coming to a neuro, and told him the story of what I just told you, and then explained Nolan told me I needed to go with my heart!

Dr. Hecker then said "WELL WERE YOUR EARS BURNING RECENTLY?" I looked confused. He said well....Dr. Nolan and I eat lunch around the same time and the other week he came to the table to sit with me and we were talking about you, and during our lunch time went over your case. We were going over things again, going over possibilities, etc.

WOW! Do you know what that did for me!? Dr. Nolan who can't do anything for me anymore...that shouldn't even have to worry about me anymore...who works at Providence, NOT Mobile Infirmary...went to Dr. Hecker's lunch table, to talk about me and try to help on MY CASE! WOW!

I mean with me telling you that story and then telling you this little story....just WOW! I hope my poor brain dead brain made that to where you could understand just HOW AWESOME GOD IS through this all! I am NOT at the end of my journey! As all my doctors are saying...I still have a rough road that will never end, we still have a lot to do, still have a lot to fight, find, and figure out, but the fact that God right at the end when I was about to be finished placed Dr. Nolan in my journey to direct me to Dr. Hecker...and then he is the one to find something (even if it is that one thing), and then the fact that they both care enough that they set their time aside to help! Wow! Just blows my mind!

Writing it just brings a flood of emotions! Our God is a GREAT GOD! So now moving along...Dr. Hecker asked Andrew at the end of the appointment if he could bring me back Thursday so I could get my nerve study test!....so as I always ask...please pray that whatever is in my body that is killing it....pray that it shows up, that it be found! No matter how much more I have to deal with, no matter how many more diseases I get diagnosed with, and no matter all I have to take and do to treat them....just want to get this all figured out! So ready!

I had to be at doctor Couch's office at 1 PM for Spinal Block! There is not much to say about that appointment except I got a spinal block. Everything went well...I had a bilateral spinal block with Dr. Couch pushing the medicine into two of the lumbar spots to numb the mid section of my abomen!

I love you all and apologize for the length. I want every emotion and detail! While I'm writing to inform the ones that I love and care about and vice versa about me, I'm also still writing to take emotions to physical...I can read the feeling of being tired and in pain! I can read when I got excited and feel the excitement! I think it is just as important for you too, so that you can feel those feelings of excitement and despair with me! If I want God to be glorified, I TRULY have to take you through the VALLEYS first....so you can see Him BRING ME OUT when His is ready for me to be out...and place me ON TOP OF THE MOUNTAIN! :)

Monday, June 6, 2011

I Am My Own Health Private Investigator

I'm back. It's amazing how I won't post for a while, due to everything being so much and everything being so overloading physically and emotionally, and then now it's I want to post due to some of those reasons.

I'm crying right now, and it's because of so many mixed emotions. Some of you might have seen that I posted about an appointment this past Saturday. It was my plan to blog about it, but I'm not sure if I don't want to just blog more of what I'm feeling right now. The appointment went greater than I could have ever expected. The doctor was the first female doctor I have seen and that was such a blessing. She was like a nurse...she listened to signs and symptoms and knew detail into the signs and symptoms with the relation to the Crohn's and Autoimmune, instead of just being like hmm...don't know.

I will give a short overview of appointment with Dr. Sharpe. My liver and spleen were enlarged along with many lymph nodes. She did see the troubles with my joints (on most of the exercises she had me do, they would continue to pop). My blood pressure was high due to pain (129/96) - crazy because my normal is 80/60. She also validated that blood work is not the tell all. Just because blood work is normal does not mean anything, along with the fact that my Remicade treatments do mask my blood panels. Agreed that there is a possibility that another autoimmune is working with the Crohn's, but also that all of this could be from the Crohn's. That would just be as we have been saying...an awful case with every sign and symptom of autoimmune diseases. She also was the first doctor to admit, that all the doctors I have seen are scared, because my case is so baffling and so severe. She also was the first to admit that when doctor's don't have an answer for everything or a why this does this for everything, that get frustrated and they don't like to admit they just don't know.

I don't want to go into detail what that specific appointment was about. There isn't much she can do for me since she is just a general practitioner, but I will keep in touch, because she seemed to know more than most of my specialist doctors when she was a general practitioner. Also, I want to keep in touch because she was a blessing for God. She made me even stronger in my beliefs of my health...I have been fighting at most times a one woman battle..and she validated everything I knew and more! So everything else was the doctors just doing/being as she said.

Now I want to get into more personal things, so stop reading if you don't want graphic please.

Along with the enlarged lymph nodes, the validated enlarged spleen and liver, the migraines, back pain, joint pain, no sleep...there has been more things that I have just overlooked. When I was just reading on the websites that I put the inserts in for the previous blog...I found things that I knew were associated but when I read it was like wow...so that really is due to the Crohn's....yet again validation that I never can get from my doctors....so now to explain.

Most of the people that I am closest with know that I have trouble eating because of the Crohn's. This disease is a digestive disease so I mean duh. When I eat, my appetite is suppressed awful. I have been having a lot of weight loss due to not absorbing and being malnourished. I'm not one to post weight but just to know how severe and critical my health is I will. In 9th grade when I played basketball in GA...I was at my healthiest...I was a solid muscle with not one jiggle, roll, flab...and even at my 5'4 stature I still was small...I just have a medium bone structure and muscular build....so being healthier than anything with a rock body...I weighed 132! hard to believe huh? Well...when the Crohn's was first found and I had the back to back colo-rectal surgeries...I had gotten to 107...which was pretty much anorexic for me. Not due because of the psych disorder anorexia but to the Crohn's related anorexia -where you lose due to not absorbing the nutrition/calories/vitamins because intestines and ulcerations and the suppressed appetite that the disease puts off. Also the disease will make you feel very nauseous to the point you can't eat or you will throw up...so I don't eat because if I throw up, I will lose even more nutrients. So....I don't know how I did it, but between 2009 and now I had somehow reached 118 and at the biggest weight A WOWING 123.......

NOW...before the app. I weighed with clothes on....IT WAS 110!!!!!!!!!! When got to doctors office...weighed me WITH CLOTHES ON.....108! With what I was wearing...I'm barely pushing a 105/106 range....that is awful for my build and structure.

I just called mom and asked her to pick me up the Pillsbury crescent rolls when she came home. I'm going to put myself on a carb/HEAVY BLAND diet...to try and get some weight but also to get SOME FOOD in my body. Right now I feel so bad and am scared to eat anything but bland because I'm having THAT much pain in my abdomen/I'm running fever/sweating cold/liver spleen enlarged of course/and just feel awful.

Got a little off...but also with eating, after I eat I do this weird cough that it's like I'm trying to cough to keep the food down. It's that it's difficult to swallow and then I cough to try to keep and get it down. Well on the website...it validated as I had believed and even talked to other Chronees who had same thing...that with Crohn's you can have difficulty swallowing the food and keeping down. It's actually embarrassing after eat. I cough to point EVERYONE notices. Sometimes I can do without, but usually not.

Next. Lately when I have been going to the bathroom, after having a BM, when I wipe there is a thick clear mucus from my rectum...it literally takes me 4 wipes to get my booty dry. Also with that, I get a discharge of like a light yellow slight brown. Well when reading it said that from the inflammation and infection of the intestines from disease that discharge and mucus would happen in severe cases. So that was something I kind of though/maybe thought didn't tell anyone because scared VALIDATED!!!

So I called mom to let her know dad made it to Chicago, and that is when I told her about my health today and about me just wanting to go strict bland right now because I knew I needed to...(you get smart about listening to your body and eating with Crohn's...so nobody can EVER tell me what to eat...it's almost like this disease becomes your baby inside...it tells you what not and what to)...so I asked her to pick up the bland things and got a little emotional just from so many things being validated!!!

After got off phone, that is when crying began and when I decided more needed to be written. I have continued searching to get all this figured out and I'm getting it figured out by myself. I just need the doctor who can say hey I knew that and treat it. That is the problem with autoimmune...it is so diverse and so individualized to each person. You have to remember that it is an AUTOIMMUNE disease....well everyone's immune system is different and diverse so think and look at it and that way.

I also was telling her about reading more into the back pains and joint pains and how they didn't have to have any other relation than the Crohn's. Most of my doctors have been digging into the back/joing/pelvies pain as associated to that other autoimmune or other disease. I knew that these came with Crohn's, but wasn't completely validated that the severity could be as they were with Crohn's. (as I have them). So yet again VALIDATION! It was like God was just putting my mind to peace through hidden things!

I'm not to sure that I won't print off all I have found and take it when I go to see big bad Rodriguez (gastroenterologist)...and be like I know you said it could be Crohn's with all this, but look...it can be this bad with this just due to the severity of my case!

:) uhhhhhhhhhhh (*sound made when much relief physically and emotionally*) My abdomen is actually hurting worse now, but I'm still happy just to have yet again been my own HEALTH PRIVATE INVESTIGATOR :)!

Please continue to pray for me...although I have one appointment down I still have 3 more this month and 1 just so far or next month. I need prayers more than you know because that's how my True Physician is able to continue my faith in this crazy journey! :) I know this had to be a little scattered, but anytime someone is trying to get health junk out in writing with different sources and add ins it's definitely going to be scattered! :)

I love you all! Please PRAY PRAY PRAY!!!!!

Pain

Right now I'm resting on the couch, and my abdomen is I wouldn't say killing me, but I would say killing me. As long as I've gone with pain...you start developing a tolerance/numbness to it. I think that is kind of sad, but also from my stand-point I think it can be good.

Also, with pain management that is a blessing from God and a much needed help!! The spinal blocks help with the intensity of my pain. Right now I would probably be heading to the hospital if it weren't for the pain management. I tell this because so many people ask..."Well if you are on pain management, you shouldn't have any pain? Right?!" Pain is one thing that no one will EVER fully understand, and it doesn't work that way. Pain is pain. You have it or you don't. What can be controlled however with pain is the intensity, the duration, and the frequency. With my patch...that helps keep my pain neutralized and then the block helps the intensity. So they work well together.

I also believe that it is one of those things, you cannot fully understand until you experience it. Even as a nurse (I had the Crohn's pains in my knees, hips, and in abdomen, but didn't know why/what related to)....I didn't understand pain. I knew I had experienced a lot of it since being a child...but didn't like I said "understand". I knew that when my patients had it, I immediately wanted to take care of it!! Well now I understand more than I ever thought I could. I try not to get aggravated when people don't understand...because I myself know I didn't.


I am going to post some inserts from websites that discuss the pains that come with Crohn's Disease and where these pains are located.... most people just think abdomen and I post a lot about rectum/anus pain. Also, you have seen me post of joints/back, etc. but here is from websites to help educate more :)

*Back Pain*

"Crohn's can cause back pain. A portion of those suffering from Crohn's also develop sacroiliitis and inflammation of lower back joints as well as the sacroiliac joint, according to Digestive-disorders.

"When the joints become inflamed, joint stiffness and lower back pain results. This pain and stiffness can spread to the pelvis and buttocks. Arthritis may eventually occur because the inflammation that is present in the digestive tract due to Crohn's can spread into the other joints."

"However, if you are among the 15 percent that do have Crohn's-related arthritis in your spine that is causing back pain, inform your physician. He may have a recommendation for treating both the sacroiliitis as well as your inflamed gastrointestinal tract."


*Joint Pain*
"Although joint pain is most common in the ankles, elbows, knees and wrists, the inflammation resulting from Crohn's disease can evolve into several different types of arthritis affecting any area of the body."

"Migratory arthritis travels throughout the body and affects different joints at different times and is typically active when the digestive system is being compromised. Pain resulting from migratory arthritis can be experienced for days or even weeks and tends to abate with the recession of overactive autoimmune activity."


No need to copy and paste or describe about abdominal pain/rectal pain...I have told you so much and enough in previous posts! I think writing this helped...when I'm in pain I always try to turn it into something positive...and writing about it turns that physical and emotional feeling into something that I can see/something that others see...and that helps in a sense! Also, it takes your mind slightly off the worst of the pain!

So if anyone reads this, it was just a release of pain! Thank you for caring to take time to read! Love you all very much!

Monday, February 28, 2011

Emotions Overflowing Into Words

Lord, I love You! I need You! You are my Rock, my True Love, my Best Friend, and as Greg's song says ...even though it does hurt, You still are God! I thank you for that Lord! Help me relay everything that is making me cry, everything that is making me hurt (physically emotionally) into this post to release all that is needed. Help me to lay it down at Your feet fully, Lord! Satan is continuing to try and get me down, through all ways, through all circumstances, through all people...and Lord you know I'm not going to let Him win! he comes from every angle...I know You have prepared me for this, and I know you have given me the knowledge Lord to keep searching for the answers...Lord keep giving me the strength and keep speaking to me clearly so that I know to keep going strong...so that I can continue to stomp satans darts!

Prayer Request - Please keep The Horsley/Johnson family in your prayers! Mrs. Lisa, Brittney, and Jenny are all very dear to me. Mrs. Lisa is another momma to me and Brittney and Jenny are very very close friends! Mrs. Lisa lost her love while Brittney and Jenny lost their daddy! Mr. Tommie was a precious soul! Keep them in your prayers! Also, keep the Chancey/Wilson family in your prayers! Mrs. Debra passed away and it has been hard on the family losing such an amazing woman!

Crying. I'm trying to get in touch with my heart...I'm truly not crying because I'm sad. I'm crying because I'm mad. I'm not mad at God. I'm mad I guess at certain circumstances, but in all truth it can all be directed at the lowest thing -satan-

I didn't post of the last days and last procedures at MUSC, just because I guess I didn't want to. It was too much and just who knows.

I'm going to talk about some of it just because I want, and it will help relay some of the frustration I feel. It will also relay the many blocks satan is trying to place to stop/discourage me.

So with the colonoscopy, I didn't do well with the prep. I got a pretty good bit down, and after was very sick. I got nauseated to where I couldn't drink anymore. I used the bathroom til clear enough. I finally started vomiting and continued a few times throughout the rest of the latter part of the day. Had trouble sleeping. The morning of the procedure, I fell in the shower...I thought I was going to pass out...I told mom...that's when I pretty much just fell from standing to sitting in shower. I then started throwing up. I immediately was confused when I noticed it was pure bile and immediately just put my head down in the shower. Then I notice *sorry this is horrid terrible but its my blog* as I'm vomiting, I'm also using the bathroom *number two...yes* ....so I'm literally profusing from both ends...which is not a good thing. After finally finishing and getting cleaned up again I get ready and we head to MUSC. Not much to say about all of that except I was in a lot of pain before and after.

Frustration - the fact that there wasn't much care in the fact of profusing out both ends and trying to get to the bottom of hmm...that's not right? why would that happen? most people in there were doing ok. I had to be wheeled in, in a wheelchair I was so weak and sick. When the same incident happened back in march a year ago...that's when all the worst happened and when I ended up in the hospital for 5 days, followed by surgery for my port, followed by immediate infusion treatment therapy. uhhh...so a little confusing and frustrating because I am like ummm no sense...I'm just voicing out here....

So since I've been home...I've tried to act normal, do normal...*not that I'm going out, having fun and partying up...because I'd pass out in two seconds* *just mean trying to do a little more as I can...trying in all to get stamina up a little more and just pushing myself a little more everyday every time*

As far as how I've felt - well as soon as I got back I had a treatment...so of course I'm very tired/weak/etc. after treatment. I thought maybe that I was just going to be all better *maybe my cold/sweats weird phenomenon things that NO ONE CAN FIGURE OUT AND FIX would just disappear/ that the nausea would just go away/ in all maybe just like a magician I would be ALL BETTER! We didn't get that many answers so I mean ya know...who knows...maybe I would just be better...haha

Well I can't account for all the days, (they have for sure been ups and downs)  but yesterday evening til late last night - terrible migraine and terrible nausea. Today, just pure nausea and very weak. Uncle Mickey actually called and was worried that I was on a medicine that was making me messed up because I sounded messed up...when I get so nauseated/weak/sick it makes my voice sound so soft to the point I sound like I'm just going to fall out. It honestly makes me more sick to speak.

So I'm going to get scatter brained on ya now and talk about the VIAL ONE!

With all of this...it's as I say...frustrating because not really that many extra answers to my health. and to be honest...the doctors are all throwing their hands up because I'm like the patients on the show MEDICAL MYSTERIES! Somethings wrongs, signs and symptoms are there, but they don't know and I'm too much of a liability, so just give up and push me off! So...

What do we know:
*We know not cancer...YAY!
*We know that the Remicade is working - so that is good...with that we need to STRONGLY PRAY that the Remicade will last for as long as it can because it does wear off after time. We can raise it one higher dose and after that no more.
*We know my intestines aren't absorbing certain vitamins at times and we are fixing my Vitamin D right now with a 50,000 unit pill on Mondays for eight weeks.
*We know that the stricture that was above my stomach was fixed by the doctor pushing past it with the scope softly to fix the stricture and he was able to.

So we are left with not knowing:

*Why I am having these cold/debilitating/sweats still. Where they come from. They are terrible. All I can do is lie under about five blankets. When they happen I soak through my clothes. If happens when asleep my body soaks the bed, sheets, mattress. Right now today I didn't have to get blankets, but I would get chills up back, freeze, and just sweat through clothes. It's hard to pull down pants when use bathroom because they stick to me. It's hard to take showers, because I have to get it so hot to try to keep my homeostasis in balance. Then when I get out, I immediately start sweating and it's so hard to put on clothes because they stick to me. They are strange

*The persistent nausea that makes me not want to eat. Also, just this terrible queasiness in the stomach.

*The headaches and migraines here and there.

*The lymph nodes in neck just continuing to stay knotted up

*Weakness


We went to Dr. Comerford for a second opinion. Now for me, it was more than that. I told him about Dr. Rodriguez saying it was more...that there had to be another autoimmune working with the Crohn's...that they were feeding off of each other making one another worse...Dr. Rodriguez just never could get to the bottom of what it was. Well I had told Dr. Comerford and also asked him to LOOK! Look everywhere...not just intestines. I told him about the cold/sweats (NOT JUST SWEATS...please know it is a BIG DIFFERENCE)...I know enough from nursing to know it is like a vasovagal problem...so I told him to look in my head...to see if it was something crazy like a norepinephrine leak...I'm telling you...ANYTHING! I told him he could even cut my from top of abdomen to lower...just find whatever was causing all the crazy signs/symptoms along with everything else!

I commend him on his gastro skills...but no answers on all the things...so frustration. So why I'm writing this blog tonight...it's me fighting for myself honestly. I know God is with me...I know He is backing me up...but it's me that has to find what is going on...I'm trying to pray and put my knowledge together. My pain doctor had talked with me and he is looking up things. He knows that the signs and symptoms just alone the cold/sweats are odd and something to investigate. He is trying to research things and help figure out whether I need a endocrinologist or neurologist. Other than that though...honestly not much support! I'm trying just to act like everything is ok, because I feel that is what I have to do right now.

when it's your body not functioning right, and you want your quality back...you fight for it.

Well maybe some people don't. I guess some people could give up and just lie on the couch all day...but I want to fight. I want to figure out. I want to help find out what is this!? Is it something new?! Is it something we can fix?! Why can't we find it!? Why did it take so long to find Crohn's now find what is causing this?!

satan is using different things to come after me to try and stop me from pursuing this. The thing is , Christ made me who I am because He knew that I COULD TAKE UP HIS CROSS AND FOLLOW HIM! More than that, He knew that I would keep on til I got answers...til I found it all and got better...God has picked me to carry this, because just as Job...something great is going to come! I can't let My Heavenly Father down! It's just so hard, because everything around you is trying to stop you. I can't stop!

I'm  pumping myself up, because I am going to have to do this by myself! It's just hard!

I knew for 21 years something was wrong...and I was right! I fought for it to be found...and low and behold! Not only a chronic disease, but a severe case. I know there are still answers to be found...and I'm not going to give up! I just need to keep gearing up in my Heavenly Armor and continuing through all this!

I wrote on the support group about my crazy signs and symptoms. There are so many Crohn's sufferers who have so many crazy things that are continuing to fight. Some have found their other autoimmune messing them up. Some have found that the Crohn's indeed is actually messing up other digestive organs. (I'm trying to get doctors to help find these things) I just want people to read my words and realize what Crohn's is truly.

As I have said...I don't want this for my glory...I want this for everyone fighting, for everyone that has lost somebody to this disease, for all the loved ones -family/friends- watching someone fight it...it's real and it's bad!

Also, I write these words not only for the awareness of Crohn's, but for the awareness of how GREAT and MIGHTY Jesus Christ is! Yes it is real...yes it is bad. How do you get through something like that!? With HIM! He is the WAY, THE TRUTH, AND THE LIGHT! Let me tell you...I can't imagine facing this disease ONE DAY without my Saviour! He gives strength, He gives power, but most of all He gives NEVER-ENDING LOVE! I know He is the author of  all this...and I know He has a fairy-tale ending whether here or with Him. With Christ you have faith...faith that He will provide...sustain you...and keep you safe even through the roughest of times!

If you don't know Him...I'm coming to you with a heavy heart asking you to please accept Him! He is Everything you ever need. Life was not meant to be made perfect and easy...when you accept Him, it will still be hard and non-perfect...but the great thing about it is, YOU CAN GET THROUGH IT WITH HIM!

As I said before...He gives you the strength, support, love, and knowledge to keep going...He gives you peace that everything is going to be ok!  He promises that while on earth He NEVER will leave you NOR forsake you! What a promise! With Him You CAN do ALL things! I can also tell you the BEST THING!

When you DO ACCEPT HIM...know Earth - not perfect...but you live your life for Him while here...you tell others about Him...

and what He DOES PROMISE....that you have a PROMISED HOME IN HEAVEN WITH HIM! Heaven - perfect! If you don't know Him, Please ask him into your heart! Without Him, you have nothing, with Him you have EVERYTHING! If you need help...just write me!

Tuesday, February 8, 2011

Bitter/Sweet Day - January 20, 2011

I'm a few days late on writing this...my apologies. I have been so tired, weak, and sick. No excuse, because I don't want to get behind on these posts and how I feel.

Jan 20 - Day After my Consultation with Dr. Comerford and his fellow Josh. I wrote in the previous entry that Dr. Comerford and his staff had set the DexaScan and the MRI Procedures the next day which would be the 20th!

This morning I was not feeling well. Nauseated and very weak. The weakness/exhaustion is normal due to my Chronic Fatigue, but you have to understand I was extra Fatigued due to the previous day. We had an MUSC encounter from 5 - 6...something like that.

So not feeling well already. Again Mom, Dad, Grandma, Papa, and I loaded up in their van and headed for Charleston and MUSC. When we got their we registered at Ashley's Tower (the digestive building/part of MUSC - how nice that they have their own place dedicated to Digestive Diseases). So after registering we took the Hospital Trolley Bus over to the Rutledge Tower for my DexaScan. After registering in the Radiology part of Rutledge Tower, I filled out more papers as I had for two days. They called me back and I lied on the table for the Scan to begin. Most of you women have had a DexaScan. Whenever you go for your "female check up" women over age 40 I think it is, have a DexaScan to check for Osteoporosis. So...why would I have one...? Good question...the answer is the most Absolute Amazing Answer and Genius on the Doctors Behalf.

Our bones need what. Calcium and Vitamin D. As you know with Crohn's...one of the first problems is anorexia. Not anorexia caused by the patient not wanting to eat, but anorexia induced by the actual disease. The disease messes your digestive system up to the point food makes you sick leaving you not able to barely eat. With this problem comes malnourishment. Most of you that are close to me know of my hair thinning and falling out which is due to malnourishment. Weakness, fatigue, sunken eyes...so many things come with malnutrition. Well at MUSC the Doctors make Crohn's Patients have DexaScans as a rule.

Number 1 - Crohn's Patients have to take steroids at some point in time for their disease. I have taken oral Prednisone a pretty good bit of times but the times were not long term. I also have been put on an IV Solu Medrol drip...that was for around a week once when I was hospitalized! Steroids decrease Bone Density with Crohn's patient. So that is the first reason for a DexaScan.

Number 2 - With the malnutrition and Crohn's Induced Anorexia...I do not absorb Vitamins and Nutrients as I should. The hair falls due to the lack of Protein absorbed...plus my Crohn's is opposite from most. Protein is what is always low with me because instead with my Crohn's I cannot eat a lot of meat. As I said before what are two main components for Bone Health and Density...Vitamin D and of course Calcium. With Crohn's not only do you get malnutrition from not eating...but with our intestines ULCERATED/INFLAMED/AND BROKEN DOWN...the FOOD THAT WE EVEN DO EAT...THE GOOD PARTS OF IT (VITAMINS, NUTRIENTS, ETC) ARE NOT ABSORBED....with VITAMIN D AND CALCIUM GOING TO WASTE IN MY BODY...what happens...my BONE DENSITY DECREASES LEAVING MY BONES BRITTLE AND WEAK AND PRONE TO BREAKAGE.

So...I completed the Bone Density on my Spine, Hips, and Legs. Well as a nurse I am always curious and will look at things and see if I can see differences or figure things out. I noticed on the hips and legs a lighter or brighter spot compared to the rest of my bone. It was unusual looking...All the bone was one color and then certain spots that were bright throughout. After the scan I asked the tech what that was and what she could tell. I knew that she shouldn't tell due to my past in the medical field but she was so empathetic towards my sickness and the suffering I was going through at such a young age that she open up a little. She told me at 22 they can judge my Bone Density not only as an Adult Scan but also as a Pediatric Scan. She said that at 22 it is an Adult but they will still compare...at an Adult level she said that even though she is not a Doctor she can see where the Density can be judged slightly on the low test. PRAISE THE LORD SOMETHING WAS FOUND! I have had how many tests and procedures in Alabama and NOTHING! My doctor had never even THOUGHT OF THE TESTS THEY WERE DOING AND THEY ARE FINDING THINGS!!!

Praise be to MY LORD AND CREATOR...THE GOD WHO CREATED MY BONES THAT ARE LOW IN DENSITY, THE GOD WHO CREATED MY BODY THAT IS ILL, THE GOD THAT IS BLESSING ME WITH DOCTORS WHO ARE FINDING THESE THINGS BROUGHT ON BY THE SIN OF THE WORLD! MY GOD IS AN AWESOME AND WONDERFUL GOD! I PRAISE YOU LORD FOR THE FIRST FINDING OF THE FIRST TEST/PROCEDURE THAT WAS DONE! THANK YOU LORD FOR THE FINDINGS...MAY THEY CONTINUE TO TEST AND FIND SO THAT YOU MAY SHOW ME THE ANSWERS AND WAYS YOU HAVE FOR ME! I WILL GO THE DISTANCE DEAR LORD...FOR YOU BECAUSE MY BODY IS YOURS AND I AM FEARFULLY AND WONDERFULLY MADE!!!!


Now that this was done we caught the little trolley back to Ashley Tower. I was not allowed to eat 4 hours before my MRI Procedures so when we arrived we went to the Cafeteria to grab a little something. I was also told not to eat a lot...that it must be something in small quantity and light. I told her that was no problem since I wasn't to caring towards food. So everyone got there food and I just nibbled on a few things.

We had to be at the Radiology Department for Digestive Diseases at 2 to begin the Prep for the Procedures during the MRI. When I arrived more paper work and my first nurse came and got me. I changed into my gown and then went to the Pre-Procedure Room. The nurse was so kind and caring towards my situation. I was already feeling very sick so she set me in the chair and placed warm blankets on me. They were getting everything ready to access my port.


My port was accessed and then the fun part. I had to begin the prep phase...drinking so much within so much time. They sedated me with pills to help the process. When I drink preps they always irritate my Crohn's and make my abdomen swell to the point of almost perforating. I could feel I was getting more sick with each sip, my stomach fuller with each sip, and my eyes drooping with each passing second. I asked my mom to get my phone to take pictures and she was like "No, Alli it will be ok..." I wanted it so people could see what is endured...I can't tell all the time, write all the time what is going on...and I want to try to let all of you in as much as I can. When mom saw me part way through drinking the prep and how sick I was...she got a very sad look and said "I'll be right back" She then returned with the camera and did something that is one of the hardest things to do as a parent. Take pictures of your child (crying/sick/distraught/and looking like death. I was so proud of her for her strength and loving me enough to help me with sharing my journey.

My abdomen finally swelled to popping/perforating size and I started crying. The nurse assessed and saw that no more could go and that my Crohn's was already reacting. They then took me in and I lied *ON MY SWOLLEN, HARD, AND SICK BELLY*...that was an awful feeling. The medicine helped calm me, but I was so sick and uncomfortable. About an hour and a half later they came in and pushed some IV dye through my mediport. After about I guess another hour they took me back to recovery. They flushed and pushed heparin through my port. The doctor then came in and talked to me. He told me that in the terminal ileum of my intestines (the part not able to be seen with the endoscopy or the colonoscopy) was some damage. (Inflammations/Erosion). He said that it wasn't terrible, but it was there. He said that he would get in touch with Dr. Comerford and they would decide after all procedures what to do. Whether surgery, different treatment options, and so on.

Yet not big news to the doctors...WONDERFUL news to my ear. Dr. Rodriguez whom I love so much had never done the MRI to find Crohn's problems. I know Dr. Rodriguez did everything that he could....its just there is more and I knew it. When he said I was in remission it crushed me. I knew I was getting worse, that my strength/energy was gone, that the pain was still just as bad, that my eyes are zombie-like....just small answers were giving me the little bits of peace I needed.

Mom then helped me get dressed and all I can say is I was sick the whole ride home.

Sorry this is posted so late! I'm so terribly sick and have been and it's been so hard to post and keep updated...so this is catching you up from that procedure day!

I love you all and please please pray that they will find something...you can even pray for something not good....because they are the best and I have Christ and this all will be fixed...we just need to find the problem!

Much love!

Wednesday, January 19, 2011

MUSC - The BIG Day

…ExhausteD…

The internet defines this adjective better than any way I could relay to you how I feel. So…what defines this word?

- Drained of energy or effectiveness; extremely tired; completely exhausted
- Depleted of energy, force, or strength
- Drained physically
"the day's events left her completely exhausted--her strength drained"


I literally am too exhausted to even type this. I felt that the internet could define the way I felt better than my brain could relay to you.


…HopefuL…

- Having or manifesting hope
- Bright: full or promise



The word and definition that describes how my heart feels! To describe today in every perfect detail would be impossible! All I can say is I know that God has perfectly planned and designed all of this to go according to HIS WILL!!
We just got home – 4:00 pm! Grandma, Papa, Mom, and Dad all went today! We started out at the hospital this morning at 7:45. We registered me as an in/out-patient and proceeded to meet with the man who we are hopeful will change my life! After much paper – work, I entered the room and talked to one of Dr. Comerford’s fellows. A fellow here is a med student that is precepting…pretty much finished but have to work under an experienced doctor before being able graduate. After talking with Josh (his fellow) I felt relieved just from him listening. Dr. Comerford came in after Josh and his presence (Dr. Comerford’s) was filled with such a spirit! He listened closely and was very receptive and empathetic to the entire situation/my case/the severity/EVERYTHING.


Dr. Comerford told my family and I; that Dr. Rodriguez truly had done everything in order as it should for my case. He also said that Dr. Rodriguez had done exactly as he would have from the beginning till his time that he couldn’t go further.
Dr. Comerford is the next step, so we ARE in the right place and with the RIGHT doctor! It was so nice because at one point he asked us what we wanted. He knows we have traveled so far with *me* who is so sick and he knows we ARE desperate and at the end of our rope with everything. He knew we were there for him…so he asked. “Are you wanting me to give you my opinion of what I think and what I feel you need to do? …or… Are you wanting me to evaluate and do as I feel to treat and help the situation?”


Just asking this question flooded my body with endorphins. Here is a man who is the best in the South and he is asking me “Are you ready?” – That is how I took it…no matter what I was getting help!


I AM GETTING HELP!!!!! I AM GETTING EMPATHETIC/COMPASSIONATE/CHRISTIAN HELP!
So how did we answer!? I shook my head up and down before he even finished the second question! I said “Yes sir, I want to stay. I’m here to get help. I already planned to stay, so if it takes a year I’m here!” I have never found myself so eager to do something that is so drastic. Let me explain on this:


(For most people receiving special treatment related to a chronic disease, they want to be nearest to the people they love. Not only because they want to, but because being around the people you love most is helpful in treatments and anything being done/performed. Having the people you love helps you have that security and emotional stableness you need…. Being hurt physically by the disease affects you emotionally just because the pain/sickness/change, so emotionally the love and bond from family helps…) so for me to say I will stay *knowing mom dad Andrew and add are away* is saying that I am READY to get my healing!!! That I understand this is my chance, and I want to take it even if it means it will be hard!


Dr. Comerford talked more and then he began talking about tests – what they do – how they do it – that he wanted to do them – so scheduling was next.
Here are the tests just that we know of today. I will tell what kind of test and what it will check for :

Dexa Scan – Tomorrow – there @ 10:15 – start 10:30 – Dexa Scan checks my bones. With Crohn’s, you WILL take steroids, you will take MANY steroids. Steroids are not good for the body because they break down the bones. He wants to check to see if there is any break down and to see if there is any damage from the steroids to my body.

Blood Work – Today – They accessed my MediPort and took the vials needed – I’m sure much much MORE blood will be taken while I’m staying here!

MRI – Tomorrow – there @ 2:00 – start 4:00 – He is doing this to check my digestive system. See if he will be able to tell anymore with this test….damage/breakdown

Colonoscopy – February 10th – 8:45 – All of you know what this procedure entails. This is the procedure that diagnoses Crohn’s!

Endoscopy – February 10th – follows with Colonoscopy – This procedure inserts scope through mouth to see into stomach and small intestine.

Follow – Up Consultation – February 24 – We will figure out what is next. Figure out what other measures need to be taken. Just listen to the doctor and get help pretty much!


After seeing the doctor we had to schedule all the appointments. Mom cried because she was sad that they would be leaving and me staying for the tests. They will come back up, but I’m staying to keep rest and not wear out going back and forth. Also in case they need any more quick tests like blood, etc. while I’m here. After we scheduled appointments, we had to do a pre-consultation for the colonscopy and endoscopy with the nurse.


We then moved from the digestive disease department to the Pre-Operative Department. They needed to access my MediPort and also they needed to have a Pre- consultation about the anesthesia part of the colonoscopy and endoscopy with My Family and I. So that took a long time. The nurse had to access my port twice. She missed it first time.


Everything was just nice and everyone was so empathetic and nice as well! I’ve never seen a hospital as big as this one! It’s absolutely beautiful! It’s big and spacey, it’s clean, it has character, the people are compassionate, everything is laid out so well….it’s just amazing!
So after Doctor was seen, after all the scheduling, after the pre-procedure consultation, blood work, anesthesia consultation, all that, we headed out and headed home!


It is bittersweet as with every big and important thing in life. I’m sad that I will be gone from all that I love so much! But then I am excited for all that is in store for my health and staying here! I know being away and concentrating on getting better and MUSC will be best for me. I can rest here and Grandma and Papa will take care of me. I am just indescribable right now. I’m looking so forward to all.
The Doctor had asked me…”What most do you want back?” I had already actually thought of this question before, so upon the question I was extremely overcome with emotions as I answered “I want to be able to eat again. To be able to enjoy the food I CAN have…to be able to taste good, to be able to actually WANT to eat…get the appetite back…be without nausea while eating. I needed my energy back. I need to be able to do my activities of daily living without feeling exhausted and overwhelmed.


I WANT MY LIFE BACK”


Like TODAY – Its 7:15 now writing this, and my eyes are closing as I’m typing. So there may be lots of errors because I’m so sleepy and exhausted writing all this out. If parts don’t make sense I’m sorry. I just felt led to write all this to the best I could to inform you all of everything. You all have stood by my side, prayed me through this, and encouraged me at all times…your love has meant more than you know and you deserve to be a part of each step taken! I love you all and can’t thank you enough!


As for phone calls. You are more than welcome to call. If I don’t answer just know that either I could be sick, sleeping, exhausted, at an appointment….my intentions to speak to you are there…it just not might be the exact time of the call. I promise if you leave a message I will get back to you eventually!


Thank you all so so much! I love you!