Living with Scleroderma

this is nothing but a curve ball

Overall Update

on September 17, 2015

I apologize for not being able to update as often. I normally let my husband update our family and friends through facebook.  There’s so much going on and I’m surprised I was able to write this post, hopefully I can finish it.

Let’s start off with my breathing.  My breathing is much more difficult now even from the last post I did about a month ago.  I am almost always on oxygen 24/7 even in the shower.  I would only remove my canulla when I’m eating.

The consistent oxygen flow is making me less dizzy when I move around.  I also don’t cough as much when I talk or walk my short distances.

  
My cough is still here.  My cough attacks get so bad that start blacking out while having them. I’m still taking my asthma medication (Dulera) and Albuterol when I need it.  I’m also taking my Allergy medications which are Flonase, Zyrtec and Singulair. For my cough I take Benzonatate and Cheratussin (if my cough is really bad at night and I can’t sleep). I also take Prednisone and it lessens the cough as it’s supposed to lessen the swelling of my lungs.

For my GI tract, I currently take Domperidone for my slow gut motility and I was just prescribed Xifaxan to treat the bacteria overgrowth in my intestine.

My Fibromyalgia is being treated by a drug called Effexor, which is the most helpful one I’ve tried so far.  Does it completely take the Fibro pain away, no, but for me, it is better than others.

For my Scleroderma I’m taking Cellcept for my maintenance.  I will also be receiving Rituxan infusion every six months.

My Pulmonologist listened to my lungs and suspected Pulmonary Hypertension.  I did an ECHO and Right Heart Catheterization.  I might have to take another Right Heart Catheterization “with Exertion.”  I’m still waiting to speak to my doctor regarding that.

I’m constantly tired, and dizzy and lately, have terrible migraines and chest pains.

I often just lay down and rest.  I try to nap often to get rid of my migraines.  Naps help, sometimes.  But it comes back again after an hour or so.

Stress literally triggers my fibromyalgia pain.  I have to deal with my disability paperwork and my doctors office constantly and it brings a lot of stress thinking about it and worrying about it.  After a letter or a phone call from disability, I will for sure have a bad pain attack later that day or that evening.

All I can do is pray and take some pain relievers.  many times they don’t work.  I try to just take the pain in because… I don’t have any other choice.

What I do choose to do is to be a little more crafty and send letters to pen pals. It’s something I can do sitting down and I can stop and start it whenever I feel like it.  It helps me to be distracted and creative too.

I’m also meeting other people in social media who are chronically ill.  It’s nice to know that there are other people out there who have similar experiences as me and I’m not alone =)

I don’t know what other people do when they are out on disability.  But I can tell you what I’ve been doing.  Many days I’m in bed almost all day long because I don’t feel well.  When I finally get up, the day is almost over.  I then squeeze in some distractions to keep me pain free. Even when I don’t feel good, I still have to wake up early to tend to the kids till it’s time for them to go to school. We have so many doctor’s appointments, tests, treatments, paperwork and prescription drop offs and pick ups and I’m so glad my hubby helps me with these tasks.

Sometimes, on my bad days, I just cry.  I get so frustrated with my condition and I worry about my husband and my kids.  I want them to have a happy, memorable and full life.  And this curve ball we’re dealing with is making it more challenging for us to do so.

I pray for my healing and those around me that need healing as well, but I’m learning to take in my symptoms well and my family has been so gracious to do everything to make life at home as stress free as possible for me.  Thank you everyone for your constant love whether by messages, text or call or visits.  I am blessed and thank God for each one of you.

What I do ask is for your help in encouraging and praying for my husband and kids. They have been so supportive and loving all these years caring for me. I don’t want them to feel so stressed about my condition.

I can’t always be around them to ask them how they’re feeling or to make sure they feel loved and cared for. I don’t know how many people have approached them and actually offered to spend time with them just so they can vent if they want or just to talk about how they’re doing with my situation.  Sometimes, there’s a difference with saying, “Let me know if you need anything” and with “Can we meet up on friday night?”

Also, please be patient and understanding with us.  We are not perfect.  But  with all our imperfections, we are not arrogant and judgmental people. We are indebted to the kindness of everyone that we’ve met and known all these years and this is what we are trying to teach our kids as well.  What we choose to share about our family are the times that we hold dear to our heart and important to us.

If we’ve ever said or done anything in the past to offend any one of you.  I’m deeply sorry for any pain and suffering you may have felt.  We do not mean to offend any of you.  We apologize and hope you can forgive us. We’ve done a lot of dumb and irresponsible things when we were younger, but we can no longer be irresponsible.

We are trying our hardest to at least live a normal life.  My husband works almost all the time and is always tired coming home to a sick wife he has to care for.  He has to do almost all the housework by himself. We keep our kids busy so they can have an amazing experience growing up.  I try to get up everyday and at least try to accomplish one goal for that day, no matter how small.  We are daily surviving only by the Grace of God.

So please be patient and understanding with us.  We have so much going on with us in our lives right now.  Even if you can’t physically help us in any way, continue to pray for us and at least bless us with your words and your thoughts.

It’s a lot less stressful to know that people think of us and bless us with their words instead of think of us and all the stuff we did wrong. We would appreciate your kindness in this time, thank you so much.

Proverbs 16:24
“Pleasant words are a honeycomb, Sweet to the soul and healing to the bones.”

~kristine

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5 responses to “Overall Update

  1. Secely says:

    Hello I really wanna speak with you. I am reading your posts and my doctor recently said I will be undergoing chemotherapy due to scleroderma. I am 17 and I wanna know if you can email me? I need advice. Thank you.

  2. Begsu says:

    I have read most of your blog and I must say you are a real hero and a fighter. My cousin has been diagnosed with Scleroderma and her lungs are affected too.
    I have a question. Your lungs have shown deterioration over the years. In that sense, how have the chemotherapies really helped?

    • kcmunda says:

      Thank you so much!
      The chemotherapy is to help slow down the progression of the scleroderma. Unfortunately, it’s not stopping the disease, but slowing it down enough to try to prolong having to get a lung transplant. If I didn’t have my chemotherapies, its possible that I could be doing much worse.

  3. Seria says:

    Have you ever considered the stem cell transplant?? It’s the one thing that has been proven to put people in remission, improve lungs (dlco increases) and stop the disease process. Some people haven’t been on meds for like 10 years. The doctor who does it is Dr. Burt in Chicago.

    • kcmunda says:

      Hi there! I feel terrible for just seeing this post now. Thank you so much for the information. I will go ahead and mention this to my specialist on my next visit. The last time they checked, I didn’t qualify for one coz my numbers are beyond whats acceptable. But there’s no harm asking again right? Thank you again!
      ~kristine

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