Random Rambling thoughts for feb. 4th

I have really become a hermit compared to my usual self.  Talking through fb chat or text is all I want to do. Some may understand some may not but thankfully my family does.

I don't want to talk to or see anyone because I feel so terrible. My mind is just so jumbled with gobbly gook that I can't carry on a in person conversation even Jeremy doesn't talk to me much other than to come in and see if I'm OK and if I need anything every so often. In a text message or private chat I have time to get my thoughts together and then respond.

I have 29 days until I go back to see my crohns disease specialist and see where we go next in this fight.

I actually had a anxiety attack last night because I was so worried about all my close friends I usually call weekly or monthly frightened they may think I'm deliberately avoiding them or that I just don't care about them anymore because this person I am right now just isn't me, it is truly the disease taking over at times and the real me is getting pushed to the back of the line.

These are just some of the things that go through my head on a daily basis since my health has been in rapid decline since the remicade reaction almost a month ago. I question if I'm even a good wife and try to do the best I can even though I'm feeling so bad.

This is really just a venting post where I needed to get this off my mind. Welcome to the thoughts of a chronically ill person.

Miracles, Allergic Reactions and Crohns Disease

Since my last post some very scary things have happened in my fight against crohns.

After my remicade infusion in December I had continued to go down hill with the crohns and new symptoms suddenly started popping up on my body.

I was suppose to go back n see my GI doctor on Jan. 5th but I was so sick and literally stuck in the bathroom that I could not make the hour and thirty minute one way drive to Columbus so I rescheduled for march 1st.

I went in for my 3rd remicade infusion on Jan. 9th and right st the end of the infusion my body started swelling up with fluid at an alarming rate. We got me home and I immediately took my water pills and other emergency meds to help with the reaction. However the reaction symptoms continued to get worse and more symptoms started showing up over the next few days so bad that I immediately went and saw my primary care physician who told me that I was having a severe allergic reaction to remicade and that if I had not been prescribed these emergency meds that I have at home that I would have been in the hospital. He upped the dosage of my water pill to combat the never ending adema throughout my body and told my to take another emergency med daily instead of 2 or 3 times a week because this reaction is going to take 3-6 weeks to get over because the remicade stays in the body for so long. 

He also told me that I can never take remicade again because if I did I could die because this reaction was so severe.

So since Jan. 9th I have gone through literal hell suffering from the crohns and the allergic reaction so much so I am isolating myself and literally cont want to be around anyone and that is not me for those who are close to me.

My days consist of just surviving and praying the pain eases enough so I can at least get out of bed and make myself dinner and bathe myself. I pass the time crocheting, coloring/drawing and watching old TV shows n movies.

I have no independence right now my husband has to do most of the house work and all the shopping and Also all the driving because I'm just not able to right now.

We all realize it was a miracle the allergic reaction was not worse because if I would of had one more symptom I was going to be in the hospital fighting for my life in full on anaphylaxis shock. Because I had every symptom of it except the swelling of my throat where I couldn't breathe. God is not done with me and still has work for me to do in the future. There is still someone out there I have not shared the love of Jesus with and all he has done for me.

Every day I write on Facebook accomplishments and no matter how small or insignificant they may seem to a healthy young adult to a chronically I'll young adult they are mountains I have climbed that day and I just keep swimming as dory in finding memo says.

Remicade, Crohn's, and Christmas

On Dec. 5th 2015 I had my first Remicade infusion.  Thus beginning my long journey into the life of remicade infusions and hospital visits every 4 to 8 weeks for the rest of my life or until the remicade stops working.  And it also is the beginning of my journey into insurmountable medical debt due to the remicade infusions costing me over 1,100.00 every time i have an infusion and I can't get any help from the remicade discount plan because I am a medicare patient and I also can't get any help through a medical grant because my husband and I make too much money. So the only option we are looking at is to apply for medical bankruptcy in the next couple of years.  Because the remicade alone not including all my other thousands of dollars in medical debt will be in just one year over 13,000 dollars!!! We are too rich to be poor but we are too poor to be rich.  We are the middle class in America.

Jeremy and I in our Very First Remicade Selfie and Me in my purple (Crohn's Awareness) Santa Hat

 The Crohn's Disease continues to ravage my body and the first infusion has not shown any signs of relieving my pain and suffering.  I am in continuous pain in my intestines, stomach and now joints and bones due to the recent Crohn's induced arthritis that has decided to ravage my body as well.  Many days I fight just to walk across the hall to the bathroom and literally have to will myself and tell myself to get up and do a little bit of house work ever day so I don't get behind on it and the chores start piling up.  

In the face of all this, I have chosen to enjoy the Christmas holiday and make the best of it. Jeremy and I have baked lots of cookies and handed them out to our neighbors, and family.  mailed out and handed out lots of Christmas cards, and when I am too sick to do anything I have started working on 2016's Smitten Mitten expedition's items with the yarn that has been donated. 

The Caverley 2015 Christmas Tree

I go back to see my GI doctor on Jan. 5th and I'm not sure how that is going to go, and then I am suppose to also have my next Remicade infusion that week also.  Just taking deep breaths and reminding myself to breathe and let it all go because I have no control over all this.  Only God does and He is better at this stuff than i am. 

JMC VLog Episode 48: Miranda You Need To Start Chemotherapy

I Will Walk Through This Valley If You Want Me To

A long restless night for both Jeremy and I, trying to cope with the
bad news we got yesterday from the GI doctor. Jeremy and I cried off
and on all evening yesterday. He asks God "WHY?" "Why does MIranda have
to go through so much?" "Why don't you just take her home to heaven?"
"Why does Miranda have to suffer?"

I'm asking myself the same questions in my head. Why? So after a night of troubled sleep, tossing
and turning I think I know the answer to, Why?

All I can think, is that there are people God wants me to meet inside the hospital where
I am going to go for my Chemotherapy treatment and that I am to share
HIS love and hope with them. And the only way I can share the love and
hope of Jesus with these people is to go through this darkness and
sickness. I am desperately praying for purpose in the face of such
adversity, and that God IS working all things for my good through this
new treatment I am facing. 

Getting this news from my doctor was hard to take, but I'll be honest
what was harder was making all those phone calls to friends and family
to tell them this bad news. With every phone call, I felt like i was
ripping their hearts out. Watching my husband lie on the floor in our
living room sobbing and punching pillows because there is nothing else
to take his anger or frustration out on. These are the things that
breaks me. But today, I am just holding on to God's promises and know
He is with me every step of the way through this next step in my fight
against Crohn's Disease, and praying that this chemotherapy treatment
will NOT be in vain and that it will work and I will get back into
remission

Miranda, The Doctor wants to start you on Chemotherapy Treatment, The Nurse Told Me On The Phone Today

After talking to my 3 doctors today, my GI doctor has decided to start me on Remicade which is chemotherapy to treat my crohn's disease. 

 3 weeks ago, I was diagnosed with Crohn's induced arthritis which means my immune system is not just attacking my guts, but also my joints and bones!! The only good thing about this is that it is not as severe as Rheumatoid arthritis but still causes damage to my joints and bones if left untreated.  The only treatment for this type of arthritis is to "aggressively treat the crohn's disease" as my rheumatologist told me.  The doctor thinks I have PERIPERAL ARTHRITIS here is a link to learn more about the different types of Crohn's Disease induced arthritis and about my particular arthritis
http://www.ccfa.org/resources/arthritis.html

Then in the past 7 days i have had every crohn's symptom i've ever had in the past suddenly hit me at the same time. I have had my mouth and tongue covered in ulcers (took 5 days to clear up and still fighting to clear up one on my bottom lip) never ending intestinal pain, diarrhea, severe fatigue, loss of appetite, pain ulcers/boils on the side of my stomach, and then last night a 10 minute dry heaving session trying to throw up everything that is in my stomach, that made me nearly pass out before it ended.

So after reviewing my symptoms and my new diagnosis the GI/Crohn's Specialist wants to see me next Tuesday Morning to start all the blood work and other tests for me to move forward starting Remicade/Chemotherapy.  Here is a link to read about Remicade and how it is used to treat Crohn's disease http://www.remicade.com/

Of Course my biggest fears of taking Chemo is 
1. will I start to lose my hair, because when I was on Humira my hair started falling out and I was forced to cut my hair very short to stop it from falling out and thinning anymore than it had. 
2. Will it make me really sick before it starts to work 
3. Will it even work, because Crohn's isn't like Cancer where doctors are certain it will work, with Crohn's it's literally "well lets try this and see if it will work" 
4. Contracting some kind of virus or infection and I can't fight it off and I die because my immune system is so depleted from the Chemo. 
5. Getting Cancer down the road due to taking the Chemo.  

So many fears and thoughts running through my head today, but I am gradually going to take these fears and hand them to God and say "you have to take these because I cannot handle them" and hope and pray for the best that the Chemo will work and I can get a bit of my life back again.  I am truly in God's hands at this point, I do not know what tomorrow holds, BUT I KNOW WHO HOLDS TOMORROW!  

Pray for me friends and family and also pray for my sister, mom, dad, step mom, and grandparents as they walk through this with me, and we get ready to put our feet to the fire again in this battle against this disease.   

New Rheumatoligist and New Incurable Illness

Update on my Visit to the Rheumatologist: Yesterday I went to see my new doctor and the good news is, He knows my GI/Crohn's Disease specialist and he is knows a lot about Crohn's Disease and all the problems it can cause.

The Bad News, the doctor does not think I have fibromyalsia He thinks I have a form of arthritis through out my body that is specifically caused by the Crohn's Disease. Which means that my immune system has decided to start attacking my joints, muscles now along with attacking GI tract. The rheumatologist said "sadly once you get one auto-immune disease you will get more"
To diagnose this type of arthritis is very tough and much like diagnosing Fibromyalsia, so that means there isn't a specific test that can be done to say "hey you have this new incurable illness"
it's more like the rheumatologist has to look at my symptoms and my medical history and just make a diagnosis and see if treating my symptoms through this type of diagnosis will help ease my pain.
the other bad news, the main way to treat this type of arthritis is through biologic medications such as Humira injections (which i have already been on in the past) Remicade infusions (a type of Chemotherapy). When he told me this i got upset because when I was on Humira/biologics before, I was constantly sick, catching every little thing floating around in the air, no energy and down right sick feeling 24/7 not to mention it made me start to lose my hair and I had to cut it all off very short to stop it from falling out.

So the game plan, the doctor has ordered blood work to first rule out Rheumatoid Arthritis because he said there is a chance i could have RA and not just the crohn's induced arthritis, he said he is hoping along with me that it is NOT RA and agreed I have been through so much I don't need that form of Arthritis on top of Crohn's. If i had to choose between RA and this crohn's induced arthritis I would rather take the crohn's induced arthritis, because RA is the worst form of arthritis you can ever get. And blood work to try and confirm the crohn's induced arthritis.

After the results come back from my blood work then the doctor will call me to tell me the test results and to set up another appointment to work on a game plan for my official diagnosis. The doctor said he also is going to call my GI/ Crohn's specialist and talk to him about running tests on me to make sure my crohn's is still in remission in my guts. I pray they won't do a colonoscopy since i am not having diarrhea, not having pain all the time, not having blood in my stool, or having problems digesting food and holding food down. I pray that my doctor will just order blood work and a ct-scan on my guts to look for inflammation.

To say I didn't cry a little would be a lie, oh yes i teared up. Especially when the doctor looked at me and said before he ended my visit "your body has been through so much, I'm so sorry" because he knows there is no cure for what I have and it is not for certain even the medications will help ease my suffering. the doctor also said "you right Crohn's is not just a pooping disease, it affects every inch of your body"

I told him that I had 26 healthy years and I am so happy I got those 26 years. And i shared with him about getting sick just 12 days after Jeremy and I got married and how we have literally been fighting this disease our whole marriage. The look on his face when i told him this you could see his heart break for me. But I told him before i left that "i figure if i got to see a new doctor i just think of it as i get to make a new best friend" and he laughed and said that was a great way to look at it.

So there it is my friends. You would think that after continually being diagnosed with different health problems over the past 8 years it wouldn't bother me so much when I get a new diagnosis. But the reality is, you never do i think. It's like every time you hear the doctor say the words "incurable" or "disease" it never gets easier. It literally feels like a part of me has died and I have to take time to grieve that part of me I have lost and then pick myself up off the floor again, give this new illness/disease to God and say "here you handle it, I'm just too weak to carry this on my own" have a good cry and then move on and focus on the things I still have control over and can do with what life I have in the face of these illnesses.

The thing that made it oh so much easier to deal with, was having my sister and my grandmother there with me when I got the news. I have to brag about my sister Autumn for a moment. My sister has never had the chance to be there with me when I have gotten the "bad news" speech before and yesterday she decided to go back with me to the examination room instead of my grandma. Autumn got a front row seat of my life with Crohn's and she saw how it affects the doctors to not be able to cure/heal me but all they can say is "I'm so sorry" and "we will do what we can"

I was thinking last night, for those who have said they want to be a part of my journey with this disease in the past, first off you have to be ready to put your feet to fire because you are going to get burned and it is going to hurt and you WILL have scars, at times it may seem the fire will consume you because you feel so helpless to help me and stop my suffering, but that is why we must trust the Lord and just love and support me through this just as I have continued tp love and support my friends and family when they have faced health problems. I think about the story of shadrach meshach and abednego, they were in the midst of the fire and yet it did NOT consume them, it did NOT destroy them, for God was with them in the flames. And that is about the only way to describe what my little support group of friends and family go through with me. But at the end of the day I just keep saying to myself, this pain and suffering WILL end one day God will heal me either while I'm still on this earth or when I go to heaven, I'm a winner either way.