Rachel Alayon

Finally – good news

Expecting bad news at my doctor appointment, I guilted my husband into taking me this time and packed up the dog in her ESA regalia to go along. After the walking test situation with the oxygen, I was not expecting the news I got. Dr. Jackson was pleased to announce that my actual diffusion is improving. Not sure what this means…I went to http://www.nytimes.com/health/guides/test/lung-diffusion-testing/overview.html to figure out what he meant. In otherwords, my lungs are showing some improvement. It is when I move or exercise that my lungs don’t provide enough oxygen yet. So, we will be performing these tests again in April. He did mention that if this keeps improving, I will not need a lung transplant. (Which I wasn’t going to do anyway!)

He was pleased to see that I am actively pursuing the yoga that Dr. Ascherman suggested. He would like me to do the wellness program at UM, but he understands the distance thing is a barrier. He was also ok with me starting a very restricted meal plan that is similar Paleo called Whole30 (http://whole30.com/). It is much more stringent than Paleo for the first 30 days. I have already started removing “bad” foods from my diet and without even trying the scale went down 3 pounds this week alone. I won’t be able to update any further on that for a month. That is one of the rules. No scales for a month.

I told him about drinking the golden milk at night and lemon liver cleanse in the morning to help with the inflammation (Paleo Secret recipes from their Facebook site). He said he couldn’t judge about herbal treatments because results are inconsistent. He said if I felt okay and was getting results to continue.

So, I got a script for the portable oxygenator. Do I really need it? He said it would help me exercise more, go for longer walks, and help me with chores that I haven’t been able to do because of the exertion. I was thinking in the back of my head that I could go to the mall alone and walk it without taking someone with me out of fear.

He was also pleased to see me lowering the steriods down to 7.5. He wants me to spend the next month at 5. The weight battle will be easier with less steriods.

I am allowed to travel by train, bus or plane now as long as I have the portable with me. The reason being that the air pressure on the plane may affect me and sometimes at the terminals there are long walks between departure gates. Now I can go to my graduation for college and maybe even see my Sisters during the summer.

I want to say this is all due to the meds. But, you and I know it is due to the diligence of those praying for me and God responding. This time last year I was supposed to be preparing to die. Just look how far God has carried me!

In the mean time to take up the time I was using for studying, I am doing an Energy Balance Yoga by Rodney Yee that is broken up into 10 minute sections and I have started knitting again. And of course, taking care of my comfort, Daisy.

It Looks Like it is down hill from here

Had my second oximetry and spirometry test today this year. It has been six months since my last one. I know that August, September and October were unusually brutal to me this time around. I wasn’t sure if it was the stress of returning to work, the work air or the palms in bloom. Well, Even though I have been feeling much better since Thanksgiving week (after the heart catherization- which was normal). My suspicions of my worsening health have been confirmed.

Oximetry = 6 minute walk test. Spirometry – blowing in to a machine

Oximetry test – First oxygen reading sitting down before exam. 98% – normal

After first 6 minutes walking – no oxygen assistance – 77% – bad

After next 6 minute walking test with 2L oxygen – 82% – still bad.

After a third run of 6 minutes of walking with 4L – 94% – normal

Never before have I gone to three rounds of walking or needed the oxygen increased. I am not feeling quite as depressed as I did in June. But, I did a devotional first and while I was walking I said the following repeatedly…

“I belong to God and He belongs to me. No one can take that away from me. He is in control of my situation and I need to be content. I will stay positive. I am in control of my mental health.” Again, again and again.

I have paid for this blog for an additional two years…..Let’s see if I live long enough to renew it. I am sure I will.

I have told my friends and church family. I am happy. I have beat one doctor’s prediction of my condition already. He said I would be on full time oxygen by this time and bed bound.

I still work, walk the dog, go to churh and volunteer at the Joseph Dreamhouse pantry. I do not walk as far. Daisy doesn’t care. She just knows it is time with me. I can’t work as long at the food pantry. The owner doesn’t care. She knows I am giving my heart. I may cough at work from talking too much sometimes. Most people don’t care. I am there doing my job and helping others. So I sit way in the back by the doors at church. That way I can escape should I start coughing or someone’s perfume is overpowering. If I think a situation may compromise my health, I don’t do it. Period. I will make other arrangements to be with that person in a better situation for me.

So, I can honestly say that today could have been tragic for me emotionally. I refuse to let it affect me that way.

I will continue to fight and enjoy each day.

By the way, I just finished my degree for Business Administration. On to my next project!

Parents – Get your meeting times right

Dear Parents:

When you agree to go to a meeting at a school, please put it in your calendar on your phone, your post its and on your refrigerator.

Don’t show up two hours late and then get mad because the person who showed up on time for their appointment is taken before you. If you are running late, pick up the phone you paid an outrageous amount for and call!!!!!! It takes two minutes.

Most of all, don’t sit there and tell me and the teachers how bright your child is when a team (as in more than 3) of teachers explain to you 5 or more times that your child is operating on a kindergarten level for writing, reading and math in high school. Face reality. Your child has some problems and allow us to help the child.

Also, do not expect gratitude that you showed up late or really early. Your appointment was scheduled so that the teacher could work with you during their non-instructional time. When you arrive late/early without notice, special arrangements have to be made to accommodate you. If your meeting has to be rescheduled because those accommodation can not be made, either give consent to proceed without or live with it. This is your child we are trying to help.

Most of all, let your child grow up and face reality. It is an ugly world full of ugly people. Learning to deal with that is necessary. In the process of dealing with the ugly, the child will also discover the beauty that is also there. You will not always be there to help your child.

Sincerely,

A public servant of the education system

Birthday Holiday Blues?

My birthday was this week. I have to admit it has been nice. I actually let myself enjoy being appreciated and gifted. Last year, I was worrying whether I would even still be functional at this point. Well, I am! What a blessing God has allowed me to continue.

On a down side, I have also had paramedics in my office twice for different people experiencing chest pains. It saddens me to think about how depressing the holidays and the stress is to everyone. I am feeling the stress myself. Then again, I was expecting to be bed ridden and permanently attached to an oxygen tank 24 hours a day at this point. One was a young girl of 17 having chest pains, partly because of her mental illness, the other part because the medication they gave her for her mental illness was causing this side effect. Which came first? Who knows. The paramedics knew her immediately and her birthdate by heart. That is just sad that this is her M.O. to get attention. Then the other was a co-worker who is younger than me dealing with a very physically ill husband and two teenagers and family members who keep dying. No wonder she is having chest pains! I think I would too. Having the holidays and the stress to get gifts for everyone causes such an additonal burden that sometimes I wish it was not even there.

So, here I am feeling all high and mighty. Last year I put up the Christmas tree to make myself feel better. This year I have gifts for most everyone, but I do not need the tree to remind me of the love of those around me and my Heavenly Father. I can actually feel the love. So, the tree has not gone up. I can honestly say this is because I have embraced my mortality and given it to God. Only He knows my time of death and each birthday, holiday and day are just a little sweeter than before.

So, if you feel stressed to get everyone a gift…..Stop it. Offer them time instead. I wanted to give one of my best friends her favorite handcream for the holidays. She said no, she would rather go to lunch with me during the school winter break instead. I can accept that. I know last year when I was feeling down, I really really enjoyed spending lunch or dinner with friends than getting something I may never wear or use. Also, for those of us with dogs, we decided to buy each other’s dogs something instead. Make my dog happy, you inturn make me happy.

I hope this has been some help.

Medical Adventuring Again

Mixed Connective Tissue Disease (or Disorder), has been a pain. Just so you know, I cancelled the sleep study. Sleep lab wanted $600 plus the 30% the insurance wouldn’t cover up front. That was going to be over a $1000. I told them no and to cancel the appointment. I then promptly emailed my doctor and he said we could move forward without it.

Personally, I did not like the sleep study specialist anyway. I got an additional bill for outpatient services for talking to her for 5 minutes and having her make me mad. I could tell by her responses to my questions that she had not reviewed my case. All she saw was a short fat woman with a lung disease. My favorite is when she told me to lose 70 pounds so that I could qualify for a lung transplant or I will be dead in less than 5 years. First of all, let’s be honest….with my condition, even with losing 70 pounds, I would not qualify for a lung transplant.

But, I did get the heart catheterization done. Here is the kicker to this. It is an outpatient procedure, you are processed like a regular surgery. My appointment was moved to 12:30 in the afternoon fasting and no hydration. I was prepped at 10:30 am as if I was going to be anesthetized. I asked for an IV several times due to my dehydration. The auto immune suppressors were making me dizzy. I got two IV ports, no IV. I was put on a cold table with tons of screens, naked, wires attached to every part of my body, painted orange on almost my whole body, and then told to wait for the doctor at 11:30. I am thinking ok, we are ahead of schedule. I can do this. Finally the heart surgeon walks in at 12:25, introduces himself and the procedure is done through my right arm IV port by 12:30. Still no IV. I am freezing, dehydrated and now my stomach is growling. Other than not getting an IV after requesting it twice, it was a pleasant experience dealing with the staff in the Cath Lab. It just seemed like a lot of preparation for a 5 minute procedure. But, I guess they had to have the other veins ready in case the arm didn’t work, the sticky pads were to shock me if I had a heart attack and all the wires were to monitor my vitals and blood flow.

My husband fetched me by 1:30 and we were home by 2:30 pm. To say the least, this is one time my husband thought of me, he brought me an Odwalla smoothy, a bottle of water and two granola bars. I snarfed those down so fast. We hit Wendy’s on the way home. I didn’t have the energy to even think about warming up anything or cooking.

Getting back to the procedure. I have heard that this is how the procedure goes. I was lucky that I did not need sedation. My arm looks like I am a heroine addict. But, the doctor was almost miffed by the results and the referral. I was referred due to the lack of oxygen I am getting and they want to make sure my heart is not under stress. The doctor informed me that my heart is very healthy and is not having any effects from the lung problems. Interesting…..I then thought maybe the sleep doctor requested this as part of her scheme to get me set up for a lung transplant. Can you hear the coins falling in the till?

I will have to wait to see if my suspicion is correct until January when I return to my normal pulmonologist (whom I appreciate greatly).

This is what my right arm looked like after 24 hours. Still hurts a little two days later.

Where do I go from here

As I was working on my homework tonight, it saddened me. One part of the assignment was to discuss any axieties and fears that we may have about the virtual internship and the final project. I have to admit that it was very hard not to cry.

My anxiety is that I have gotten this degree for nothing. That in the end, when it is all said and done, it was just a bucket list check mark. I orginally wanted it to be a springboard for a nice raise or even to be promoted to work downtown. Then I became ill. I talked to God about continuing. I continued on just to keep myself distracted from my husband and my health issues. Yet right now, I am wondering just what have I done? Have I pursued this just as an escape from my husband? My fear is that my health will continue to decline at a faster rate and it will prevent me from using what I have learned.

Now, please understand, I have had some great intriguing conversations due to my additional education. I really understand economics now (ugh) and the impact our elections in two weeks will have on the global economy. Either way, we are doomed. I have enjoyed learning about strategies, visions, missions and goals. I have had a great time understanding ISO certifications and Sigma Six and don’t forget Kaizan.

The real bottom line is that I have to give it to God again and let Him decide what is to be done with this degree.

So, please pray with me now….

Dear God,

I am coughing hard again. I just want to crawl into a hole. But, You, oh Lord, have a greater plan. I believe that You are going to be able to use me to the very end, including this degree. If there is a special place you would like me to work after December, please let that door be open, obvious and close to home with accommodations for my condition.

I know I prayed earlier this month for a job within 5 miles of home and still in the school system. I just want health insurance to cover my bills and some extra to pay the bills.

I know this is nothing for You. So, I ask believing you will answer me before New Year’s eve.

Should your answer be NO, please give me peace in my heart to accept it.

Amen.

Don’t Grumble over fetching the coffee

One of the things I have learned over the years is the value of a cup of coffee.

My first job in Miami was time and billing for a CPA firm. Due to public transportation scheduling, I either got to work early or late. I opted for early. The head CPA would usually come in early also. He asked if I would be willing to make the first pot of coffee and have his cup ready for him when he came in the morning. I said yes and he taught me how to make an incredible pot of American coffee.

Little did I know what a valuable lesson that was.

As my academics part of my internship stated to use coffee as a networking tool (Chegg Inc., 2016). As an experience, use it as a customer service tool. Nothing diffuses an upset client as a kind gesture of offering a fresh cup of coffee. It does not matter if they accept it or even if they drink it. It matters that you offered it.

In serving coffee to superiors, you are allowing them to stay focused on a task. Also, it puts you in their path (Chegg Inc., 2016). Conversations will start, opinions may be garnered and assignments will eventually be shared.

Become the best at this and other tasks and assignments will follow.

Reference:

Chegg Inc. (2016). Common situations and questions. Retrieved from http://www.internships.com/student/resources/workplace/common-situations-and-questions

God is in Control

I was really upset last week when Hurrican Matthew caused my doctor appointment to be rescheduled. This appointment had already been rescheduled since May. So, I got to go to the sleep specialist and now have an appointment in aobut 3 weeks to do the sleep study. This needs to be done to see if I really desaturate during my sleep or do I stop breathing for any period of time.

I got the usual… You need to lose weight. Why don’t you have aportable machine? Oh, and you need to stop exercising, but you need to lose weight.

Okay, I know I have gained weight due the steriods. I am working on it. Exercising does help me to lose weight, but I can’t breathe. My doctor wanted to me to wait on the portable machine because of the sleep study. Now, they are saying that the sleep study has nothing to do with me desaturating as I move about.

My favorite is when I was told that watching my calories and eating less is the only way to lose weight, exercise doesn’t help at all. I don’t know where that Dr. got that information from. Exercise has always helped me.

So….Once the sleep study is done, I am to get back with the dr to meet with my other drs to come up with a continued treatment plan. In the mean time, I will see if I can get a script for a portable machine.

I will be done with my internship in December, then I plan to do yoga two nights a week. So, far, this doctor is the only one against it.

So, I am back to doom and gloom. I have in the last 14 months gone from your gonna die to your going to be just fine, back to death is waiting behind the door for you.

Now I know why God kept rescheduling this visit. It wasn’t a happy one and in His eyes, it really doesn’t matter.

My Goals for the next 8 months…

1. Finish school

2. Have a party during winter break for my birthday

3. Go to my college graduation in Chicago in June

After that…What ever happens, God has me in His hands. I will continue to work, go to church and serve in Joseph Dreamhouse food bank until I am unable to anymore.

God is Behind the Scenes

I found out Wednesday about some interesting news. The landlord has to raise the rent starting in January. Now, don’t panic. I have been expecting this. I knew in my heart that it wouldn’t happen unless we could afford it.

You see, what I didn’t know is that our landlord is not really our landlord, but his son. So, when my husband became ill and we had problems paying, he took the heat from his father because he liked us. Then when we got really behind and couldn’t pay until the tax return came in, he took more heat from his dad. But, we always paid and never caused problems. His dad has been pressuring him for two years now to raise our rent. In fact, I remember him mentioning that he would have to raise it several months ago. So, he finally told my husband Wednesday that he felt really horrible, but that his dad wants $1200. But, he then told Eliud that his dad will have to deal with $1100 because he is the one who does all the running around for him. I texted him Wednesday night that I was okay with the rent increase and not to worry. I didn’t want him thinking I was mad or upset about the increase when he should be worrying about his family and the storm.

My take on this….Amazing that his dad wanted to raise our rent or kick us out six years ago when this tribulation in my life began with my husband. I see that God used our landlord as a buffer between us and his dad. How incredible that God worked through him to protect us. Even now He is still protecting us.

I know that down the road in the next two-five years we are going to have to move due to my health. I also believe that God will provide just the right place for us at that time.

While my husband was sharing this conversation with me, I just wanted give thanks to God. Only He could have worked this way in another’s heart.

Telling the Truth

My son just helped me vacuum my room and the upstairs. After 10 minutes I was coughing like I had run a mile. So, I put the oxygen on to get back up to maximum and the coughing proceeded to die down. My son came in afterwards and talked to me.

He asked how I was doing with my condition. He commented about how I don’t really talk about it. I thought in an instant, should I lie? No, he would know and get mad. I told him that talking about it makes me cry. He said not to explain. I told him that he needed to know. So, I explained that I wasn’t getting any better and that I am desaturating faster than before. Everything (my treatment plan) hinges on some tests coming up. I explained to him that was why I was so upset Wednesday, because Hurricane Matthew rescheduled a very crucial appointment to treating my condition. He didn’t really say anything.

What is he supposed to say?

I could have told him that I was fine like I do at work. Hey Rachel, how are you doing? Fine. Inside, I feel like there is hand around my throat and a cotton cloud in my brain. How does one tell your everyday co-worker who has their own problems about how you are feeling everyday? You don’t. I have told those that need to know and are truly concerned as to where I am daily.

I am exhausted. Here is picture of what I am working on today to make into a presentation for my final project for one of my classes and what my dog thinks about all my homework.

I have to make this into a 14 slide power point on Publix.

Daisy’s opinion of my homework.

And as a reminder to myself….