Pictures of The Past

A picture is worth a thousand words along with a few dozen memories and emotions. Capturing the past the heartache of what once was bubbles over.  Sometimes, I avoid looking at my photos, but other days the temptation of a walk down memory lane wins. The days when laughter was plentiful and sleep was not vital.  Staying up half the night with friends was normal. And of course, anything seemed possible. Not knowing that all too soon minor aches would explode into full blown take over your entire life chronic illness.

267246_2157677417059_8146349_n

I look at the girl in those pictures overflowing with laughter and pure joy. The insecurities going through my mind as a teen now seem silly. Things weren’t perfect, but they appear that way. The past usually seems easier as we look back.  There are still days I miss the people who left me. The friends who said they would be there, but left.

 

1482874_10202695325971023_1752342124_n.jpg

It’s true, you adjust to the chronic illness life, but little things happen that make you grieve your past. I try to not get carried away in the what if I wasn’t sick game or the things I miss. Everyone asks what you miss most, in reality, I doubt any of us can narrow it down to one thing. I miss how active I once was the energy. Being out in the sun or at the ocean. I miss dancing, hiking, and doing mission work. I miss my hair. Not needing to worry about passing out or running to the bathroom. I miss my old bad days.

532906_10205231745459925_4483446258684590031_n.jpg

All in all most days I do well with being chronically ill emotionally. I have adjusted and know in my heart that God will use all the pain, symptoms, and every other little chronic illness thing for His glory. He has allowed Lupus and these illnesses to be a part of my life, therefore, I am okay with where I am. Yet, I am still human. I become anxious, overwhelmed, grieve, and ride the roller coaster of emotions. After last April, my emotions went on vacation, but they are back and we are learning how to live together once again.

To be honest, most days are hard in some capacity. Currently, this includes minor meltdowns, severe chest pain, dizzy spells, joint pain, and bladder pain. I have another halter monitor (I will do a review- if I don’t throw it in a lake first). A bladder infection with a side of kidney stones. To top it all off my summer class final is coming up. My liver is holding up though I am cautious due to the fact I need to taper off steroids.

This post is a bit long, but I will be doing a Bible Study update post to let you know more about online Bible studies, which I am excited about!

Can you relate to anything in this post? If so, let me know in the comments! You are the reason I share about my life as a spoonie.

Advertisements

Upper Gastrointestinal Endoscopy

Medical testing is a normal part of a spoonie life. Depending on the illness, the progression of the illness, and several other factors determine how often we go for medical testing. On average, I am sure most Spoonies would agree with me that it is too often. I go for blood work a minum of monthly. The majority of the time there is at least one other test my body must endure at some point in time during the month. I feel like there is never enough time to recover between medical tests. Though most tests seem simple, each test is draining on the body.

Tomorrow, I will be going for a Upper Gastrointestinal Endoscopy. Which means, yet another trip to the OR. Over the past five or six years I have had many visits to the OR. A grand total of five surgeries in four years and including tomorrow, eight scopes. The scopes I have had include  Upper Gastrointestinal Endoscopy, Colonoscopy, and Cystoscopy  No one expects to go to the OR. It is always dreaded. But you do what you’ve gotta do, in order to get better, to move forward, and to get answers.

download (1)

Going for my follow up Gastro appointment, I never would have thought the doctor would even think of rather along mention another scope. I recently had a colonoscopy while on vacation in the hospital. I am less then thrilled about another scope, but I do understand the doctors reasoning. My stomach is still swelling, nausea, not much apatite, and I am still having intense pain, too often. The doctor wants to make sure that there are no ulcers in my stomach, no blockage, and no gall stones. Despite the fact that I lost my gall bladder nearly two years ago, there is a chance that in the liver or one of the ducks a stone left behind causing trouble.

For those of you who do not know what an Upper gastrointestinal endoscopy is, I will give you a quick over view. WebMD defines an Upper gastrointestinal endoscopy: ” is a procedure that allows your doctor to look at the interior lining of your esophagus , your stomach, and the first part of your small intestine through a thin, flexible viewing instrument called an endoscope. The tip of the endoscope is inserted through your mouth and then gently moved down your throat into the esophagus, stomach, and duodenum (upper gastrointestinal tract).”

EGD

My procedure will be done in a hospital as an out patient. It will take a least an hour. They will be performing an internal ultra sound during the procedure as well. I will be asleep the entire time, praise God.

I have gone through a lot of medical testing and medical stuff. For me knowing step by step what will occur eases my anxiety. Even so the day of most of my procedures I get pre-opt jitters. Going under anesthesia is nerve racking for most people. I have been known to freak out a bit on the way to the OR. Once on the way to the OR for surgery I asked the same question so many times the doctor told the nurse to make me shut up. Hey, no one likes seeing the OR.

Overall, I am not anxious about the procedure. This will be my third Upper gastrointestinal endoscopy, therefore I know what to expect. At least I’ll get a nice nap. Due to the fact that I am on steroids, I am not expecting them to find much.

images

Throw Back Thursday

January is birth defects prevention month, it should also be birth defect awareness month. Birth defects are one of those things people don’t talk about. Many view people with them as outcasts. It is true that some defects are due to carelessness of the expectant mother, however there are many times that there is no way to prevent a birth defect. The cause of birth defects goes unknown for many. In fact some people live a good portion of their lives without ever knowing that they have an internal birth defect. I am one of those people. I never suspected that I had a birth defect and neither did my parents. It was an accident that I found out.

Last January, I went to have cystoscopy. In simple terms this means I had a bladder scope. There are a number of reasons cystoscopy are preformed, for example to look for interstitial cystitis, other bladder disorders, or kidney stones. Generally this is a short scope. Many people remain awake for it. I insisted on being put to sleep and was informed later on that it was the right descion. Right before my cystoscopy I met the doctor who would be preforming the scope on me. We discussed my symptoms and pain. He decided that it would be beneficial to look in my kidneys to see if I had additional stones. As we made our way into the OR, the doctor instructed one of the nurses to clear the schedule for the remained of the morning because my scope would take a while.

My scope took nearly an hour. I woke up in extreme pain. For me the cystoscopy was by far the most painful scope I have ever had done. The nurse begged me to go back to sleep, but I was in too much pain to rest. In addition I needed to use the bathroom. The nurse insisted that I didn’t need to go and argued with me for a while before going to get my mom. Of course I was sleepy when she came back. I could tell by the look on her face that they had found something during the cystoscopy. Fear and joy leaped within me. Joy that someone found something. Fear of what it could be. She told me that I had three kidneys and three ureters.( The doctor was so excited because he has never seen this before). Then explained that I had a stent in my left ureter because they had seen something on that side. I was in awe that I made it to merely a few days before my twentieth birthday and never knew that I had three kidneys.

The medical term for this is a fused Supernumerary Kidney. The kidneys on my right side are fused together which is why no one noticed I had an extra. My right ureters are twisted together. Less than 100 cases are documented worldwide currently. If it is caught during childhood it is removed. Many times the extra kidney begins giving the person trouble during their late teens to early twenties. No research is being done about supernumerary kidneys because it is so rare. Most doctors have minimal knowledge about it.

Nearly everyone who hears that I have an extra kidney think it is cool and ask, “Can you donate the extra one?” Sadly I can’t. No one wants my extra one, it would just give more issues to them. My extra one might be the cause to some of my kidney issues as well as some of my abdominal pain. It does not function a 100%.

Just an update 12/5

The past forty eight hours have been demanding in countless ways and utterly draining. Thursday I spent the majority of my day getting some much needed rest. As I prepared to go to the Thirsty Thursday service at my church I collapsed shirking in pain. I nearly brut my face with my straighter (of course my body acts up the one day I need to straighten my bangs because they were sticking straight up in the air). The intense pain in my abdomen continued to come in waves throughout the night. I did my best to hide the pain but was unsuccessful. As the night unfolded the pain intensified. I have encountered abdominal pain in the past, however there was something different about this pain.

The next morning I collapsed shirking once again in pain. After much debate my mom and I decided it would be best to head back to urgent care. But first I needed to get stitches removed from a biopsy.

I travel a good distance for my medical care and overall it is worth it, although it is draining. In comparison to the ER I adore urgent care. Urgent care is much quicker, more productive, and half the staff knows me which is helpful. Last year I was done there at least once a week for IV antibiotic to treat a stubborn kidney infection. Most of the staff is caring and encouraging. The urgent care I go to is very knowledgeable and equipped with everything I need.

Of course they did the norm once I got back to my room; get history, symptoms, blood work, IV, vitals, urine culture, and pain medication. My veins did not want to work with the nurse so I was lucky enough to have to get two needles. I hate being poked more than once, but I understand that my veins (and body) are tired and that the nurse is doing the best that they can. I get annoyed with various things being ill however I try not to complain to the doctors or nurses. They customized ice tea for me in preparation for my CATSCAN (not the best ice tea I’ve had).

I was shocked that the pain medication did not help at all. I was still at a nine, near tears, and doubling over. They gave me more medication which helped a tiny bit. I tried to rest but couldn’t get comfortable.

Most of the CATSCAN staff recognizes me, so we chat as they prepare me for the test. I enjoy the ride there and back this time of year because the hall ways are decorated for Christmas. Christmas makes everything better.

It took hours to get the results however they were not surprising. A cyst broke near my kidney on Thursday. In addition I have another cyst (Thank you Endo) and at least one more kidney stone. I have been passing kidney stones for a year now it’s a bit much. It is demanding on the body to say the least. I think I know how to ‘fix’ the issue so that my body will quit making them. I need to wait for another doctor’s appointment this week and hopefully they will listen to me.

Of course having three kidney and an extra tube complicates things even more with the kidney stones.

kidney-stone

gallbladder-kidney-stones-removal-funny

Pain medication is providing little relief. I need to attempt to rest, pray I sleep some, and just push through till I see the other doctor. Hopefully the cyst will break soon and the stone will pass. Of course this is all happening right when I have finals hopefully I can do well despite this medical mess.

If you have had kidney stones or cysts share you experience in the comments! I would love to hear from you.

Sending you lots of Christmas prayers, spoons, and hugs ❤