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.
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.
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! :)