Everything But The Kitchen Sink

I am thrilled that finals week is finally behind me. Whoever invented finals is not my best friend. I love school, but finals week is too much stress. I will be graduating this week with my Associates, finally. Then a summer course, and I am completely done with community college. There are a few things in the air in reference to where I will be continuing my education at. Both my options are great. I am trusting in God to direct my steps and I am excited to see where He is leading me.

A few days before finals, I passed out for about ten minutes, while taking my cat to the Vet. (Poor Kitty was scared outta her mind). I didn’t have my typical warning signs. I am doubtful, it was just POTS, but then again who knows. Hours later I went to the Emergency Room.  My doctor isn’t clear about what an emergency is, therefore I have to be a pain and call to find out. The conclusion of the visit was I did not have a heart attack and no bleeding on the brain. I am going through a period of falling and dizzy spells once again, which is irritating. I have had intense muscle  pain in my legs which has made me wonder if it’s som how related. I have discovered a few things that help a tiny bit with the muscle pain: Village Natural Soap, Dr. Teals Pure Epsom Salt Body Oil, and tiger balm. The soap and oil are excellent for chemo skin. These are the first things that have helped my chemo skin.

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I am back on steroids for a short amount of time. The goal is to be off sometime in June. I switched from Methotrexate to 6 MP also known as Mercaptopurine. 6 MP is also a chemo and the dosage is higher. I noticted there isn’t as much paticent information as Methotrexate. I have been on it almost a month. I take it after dinner because in the beginning I was having migraines. The first two weeks was difficult. My assumption is because it’s a higher dose of Chemo. If this doesn’t give me the assistance I need we will be adding a biologic. Personally, I am comfortable with this option, more than ready to begin, and I think it is a good step. Many meds help both Lupus and IBD. Right now, it is another waiting period, which is always hard.

Currently, I am able to eat which is always exciting. I have a lot more options with food on steroids. In moderation, I can do fruit, juice, and small amounts of veggies. Being able to eat healthy is a treat.

We have had a lot of rain lately where I live. My hip and arthritis in general, have been less than happy about this. I am still not sure what is going to happen with my hip. Still having issues finding a doctor. Life is complicated with a chronic illness, as well all know.

Here are some pics of the Lupus hand sign from awareness day:

 

I will be posting more on the blog now that the semester is over. I have been working hard on a few posts and I am excited to share them with you! How have you been doing? Let me know in the comments.

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Oh! And by the way, I have made a new e-mail for the blog, being that I got locked out of my old e-mail after my concussion. hopefulspoonie@gmail.com

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She is the Clay

Tears have made her face moist

She’s longing to hear your voice

Seeking guidance to make a choice

She’s waiting day after day

Knows you are the potter and she is the clay

Things will fall into place in your time

Not alone in this climb

You’ll get her out of this bind

Let her know you’re near

There’s nothing to fear

Make her path clear

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March Update

*I just wanted to leave a quick note at the beginning of this post. I will be sharing some obstacles that I have encountered lately. I am not doing this for pity, attention, or anything along those lines. I attempt to be transparent with you so that you know that you are not alone. My hope is that my story can provide inspiration, comfort, and support as well as raise awareness for chronic illnesses. With that being said, I will jump right into this post, hope you enjoy.

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I have been MIA from wordpress for a while. I have not had the spoons to write but I wanted to blog. There’s never a dull moment when living the spoonie life. For those of you who do not follow my Facebook page, Chronically hopeful, about two weeks ago I had a bazaar syncope episode. The day it started out unusual, but I brushed it off. Nearly out of spoons at only 11 am I reluctantly retreated to the living room to watch television. I struggle with really resting. It is difficult for me to remain in one position for a long period of time (and by a long period of time I mean more then 5 minutes). In between watching television I made lunch and took my medication

One minute I was seated once again in the living room, the next I’m on the floor a good ten feet from the chair with tears streaming down my face. Laying on the floor I realized that I had passed out. I had collapsed with zero warning signs. I have passed out at least a dozen times before (Like every other POSTIE patience). I can recall what unfolds before I black perfectly each episode. I can tell you till this day what happened the moments leading up to the first time I passed out at age nine. For me not remembering was a red flag. I have passed out so many times I often joke that I am an expert. Normally my vision begins to go then my hearing.

The weather was less then ideal which forced us to go to the nearest ER. I have an extensive negative history with this hospital. The majority of the people do not do there correctly. They never take me seriously. When I was in high school my school sent me there because they believed I was having a heart attack. I had a three hour wait to be checked in.

The hospital has switched management. I was hoping that it had improved however that was not the case. Again no one took me seriously. Only one person was considered who didn’t have the authority to assist me.

All of my doctors were informed about the episode and found it bazaar just as I did. The impact of my fall aggravated a few things. I have had an increase in migraines and have began experiencing numbness on the right side of my body. In addition I have had memory issues, trouble focusing, and extra fatigue. I have a few doctors appointments coming up. I am wearing a heart monitor once again just to rule out any additional heart problems and potentially to rule out POTS being the cause of that episode. (I will do a review on the monitor. It is a different one then the one I had in the fall.)

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In a way my condition is stabilizing in the sense that I am not encountering additional symptoms daily. Though everyday is packed with various obstacles. It has been extremely difficult for me to stay on top of my school work. I am use to going ahead with my work, right now I’m barely keeping my head above water. Every assignment takes three times as long as I am use to. Occasionally I have difficulty comprehending what I have read. Needless to say this has been frustrating for me.

I try my best not to focus on the things I do not accomplish or the negatives, though I’ll admit there are many times I fail at this. For now I am taking everything one day at a time, one assignment at a time, one moment at a time. I know this is temporary. I also know being frustrated is normal. I have learned to that it is okay to feel anyway emotionally that I need to at any given moment. I just can not stay in a negative mind set or allow myself to act negatively because of my negative emotions.

If you have several chronic illnesses you know when one illness flares, every illness flares. My Lupus is throwing a fit because I am due for my Benlysta soon. My stomach is still misbehaving as well. Hopefully I can get everyone to calm down and behave soon… or maybe they can all go on vacation lol.

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How have you been doing? Comment below and let me know, I love hearing from you. Please subscribe to get blog updates!  Later this month I will be doing several posts which I am excited about including: Endometriosis Awareness, Paw Prints on My Heart, and a College post.  Sending lots of spoons, prayers, and hugs ❤

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.

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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 ❤