Rachel Alayon

New Year – another New Lesson

Every New Year’s Eve, we have our children over to Rock in the New Year with Ryan Seacrest. Then we toast the ball dropping with a coke in those cute bottles. Well, let’s just say this year did not go as smooth. Age and my illness has made this tradition very difficult for me. By 10 pm I had a head ache and wasn’t feeling quite right. I am usually asleep by this time. By midnight I had a really bad headache and wanted to maim everyone in the house. Then my husband got upset because I wanted ginger ale instead of coke. When all was completed and my children were preparing to return to their own homes, I announced that we will not be bringing the New Year anymore. I just can’t do it anymore.

My husband was very angry at that point and I wasn’t happy either. So, the next morning we had a talk. Actually, we had a very nice talk. He expressed his disappointment over the programming and the never endless commercials. I expressed how ill it made me feel. So we agreed to toast to the end of the year by having a dinner on the 31st from 6 pm to 9 pm. Everyone can have coke at that time and everyone can then do their own thing. My husband called my children and let them know the plan for this upcoming December 31st.

My husband has also been begging me to see a movie in the theater with him. I just can’t. He just doesn’t understand that those two hours in the theater make me ill for two days. I have explained to him that between the cold and sitting in those uncomfortable chairs for two hours, I am in pain for the next two days. It just isn’t worth it for me.

So, the bottom line is that staying up beyond 10 pm is no longer an option. One more lesson to add to my list.

May God bless your New Year and those that follow. Remember that in your struggles, you will find things that you can’t do anymore. Remember to enjoy the things you still can do or look for new things to try that don’t cause you agony.

The Cost of Being Alive

I am the proud owner of a CPAP and the infamous SoClean.

I went to the supplier since getting a tech to come to me would not have happened until after the beginning of January. What does this have to do with the title?

At the training, I was informed that everything will go through a 3rd party biller. The insurance will cover up 70% after the deductible is met. The SoClean is not covered at all. (A really close friend bought that for me for Christmas and Birthday). That is about $600 left to meet my deductible for this year. January being around the corner, that means I start again at 0. Don’t forget that there are parts that have to be purchased every 3-6 months to the tune of $300 a pop. Going through a 3rd party biller will mean that they will jack up the price by 3 so that they can get my deductible up front and in their pocket before I get any other procedures. Then I pay 30% after that. Shortened, due to this new equipment, I need to make sure that I have $1200 minimum at the beginning of the year to cover the upkeep costs. I am not even sure this therapy will help.

I read an article in AARP about a person who refused to do the sleep study. When asked why…She stated that dying in her sleep sounded very peaceful and that all the upkeep to stay alive causes extra stress that is not necessary. I am beginning to see her point.

My first night with CPAP, I could not sleep. It felt like I was trying to breathe while swimming underwater. So, I just focused on keeping my breathing steady until the alarm went off. But, during that time, I had three anxiety attacks over the cost of the extras that were not disclosed before the equipment was ordered. Not everyone has the money for this. My second night I actually slept since I was exhausted. Still felt like I was breathing while underwater.

So far, MyAir results show that I do not have sleep apnea. Wow, no surprise there. I argued the results of my sleep lab with my doctor because the test was not a “true” picture of how I sleep. I sleep on my side with a 30 degree wedge. Of course I have sleep apnea on my back and flat. I personally think this is medical conspiracy to get people sucked into this situation. After some more research lately, most people do have apnea events about 4 times a night. My test result was just a little above that.

I am willing to give this a bash while I am getting my oxygen concentrator repaired anyway. My problem is, what if I didn’t really need this? Now I am stuck with a product that needs a script to get expensive supplies and I am now committed to three months of paying for it since it is unreturnable. Yes, I can sell it on EBAY. But, is it really worth the bother. What about my friend who wanted to make sure I had the SoClean. She is now out the money also.

I know I may be over reacting due to the stress of the holidays and dealing with another problem and medical equipment with the complications of having a flare of my symptoms. It might just be some paranoid delusion. I will say that if I had known the cost of the upkeep of the equipment, I would have told him NO.

I will keep you informed. I have only had the equipment for three days. I did pray all the way home to God after I picked up the equipment that He would have to provide the money for this equipment and supplies. Ultimately, He will. He always has.

Now, my next endeavor is to contact the president of school that oversees the doctors I see. I want to know if there are professional developments and/or curriculum that includes informing the doctors of health care costs and the stress it puts patients under.

I see that I need to do more research when a doctor suggests a procedure or equipment before accepting those financial burdens. I thought I was prepared for this. I guess I was not mentally ready and having it happen during Christmas was even a poorer decision.

In the mean time. Merry Christmas and Happy New Year from Daisy and I.

Stress + Holidays = Flare

I just wanted to share an observation this week.

Have you seen the ad for Dupixent? Oh My Goodness!! I have never been so excited for a pharmaceutical ad in my life! First I love the fact that it shows how I feel on most days. The ivy climing up the feet, the ants on the hands and sweaters and blankets looking like catci. About the only thing they could have added was the bugs landing on arms and face. Either way, I called them and told them how pleased I was with the ad. If you haven’t seen it, please take a minute and find it on Google. I am going to talk to my doctor about this medication at my next visit. It is to treat underlying causes of dermatitus due to auto immune disorders. Unfortunately, I take other medications that would cause problems with it. I just find it exciting to see new medications that are finally addressing how some of us really feel.

Why did I bring this up?

Well, Happy Thanksgiving, Merry Christmas, Happy Holidays….etc. This is where life hits fast forward until we get past Valentines. I have seen it driving and have felt it on my skin. Honestly, my pain has been pretty good. It is the forever buggy feelings that annoy me when I am stressed. I spent most of this week feeling like I had flies crawling on my face, ants walking on my arms and mosquitos on my legs. Tell the doctor? I have in the past and I am usually told to stop stressing, do more yoga, drink more water and if I want, I can temporarily increase my steroid amount until the stressors pass. I don’t know about you, but the first three are “easier said than done” and the last one is just “bloat city” that then takes another 3 months to get the water weight off. So, I just deal with it. If it gets too bad, I reach for the OTC hydrocortisone cream.

What is causing this? Stress. Extra traffic when traveling to basic destinations. Trying to figure out gifts for hard to buy for people. Having to explain a 100 times why I can’t do evening events anymore. Then trying to deal with my family quirks and illnesses. Also, the fact that my body is just not reacting the way I want it to.

I have been doing my yoga every morning. I am eating anti-flammatory and continue to drink plenty of fluids. Like every flare, this too will pass. I see the doctor in January in case it does not pass.

As for which auto immune is acting up, I am going to guess that sjogrens or the the fibromyalgia.

Let’s talk about Quality versus Quantity

I have gone through almost $700 in co-pays for dr. visits, labs and various tests in October. This included a ct scan, sleep test and the usual O2 tests I take every four months. My wellness visits just happen to fall in there also. To say the least, I was averaging 2-3 dr. related appointments a week. After all is said and done and my wallet is empty, here is the bottom line. ( I am still waiting on my bills to finish coming in.)

I really don’t need oxygen at night. But, I do stop breathing 30+ times during REM only. So, pap machine has been ordered. I will get back to you on how that goes. In mean time, continue oxygen at night. (Conspiracy theory- if you snore, you will need a pap machine since you have apnea. Guess, what? That means we all have sleep apea. Talk about a medical scam.)
Stop playing with getting off prednisone. It threw some of my labs and tests off and I am fatigued. The amount I am taking is less than what my body normally produces anyway. Long term consequences are minimal considering everything I am suffering from.
Team Leader Dr. Jackson feels that I have leveled out. Bad news, my CT scan is identical to three years ago when I was diagnosed and started this blog. Good news is that it is identical to three years ago. So….lung function has stabilized. Current medication routine is working. I now go to 6 month tests and dr. appointments. Yay! Less money out of my pocket. Dr. stated there is no longer a timeline on my life expectancy now.
One of my wellness labs came back questionable. I was not informed which one and the primary dr. has not released the results to my lab site. They wanted me to run the lab again. I told them “No” unless they could tell me what was exactly wrong. After a long pause, I was informed it looked like I had an infection. I said, “Yes, that would explain the fevers I have had the last couple of evenings. But, I am already on antibiotics every other day anyway. And I am probably in a flare of one of my many conditions. I get labs done in three weeks again anyway.” No…that was not good enough. They want me to do it again and have a follow-up with the primary care. Of course my mind goes to “NO”. I just spent over half a month in doctor’s offices. I refuse to go back over “you might have an infection”. I told them to send me the lab request so I can decide if I will do it again. I politely informed them that if the primary care was concerned, to please call my Team leader at UM and discuss it with him since he is my medication manager.
Read an article about quality versus trying to stop dying in October AARP. Interviewee was asked to take sleep test (read this after mine had been done). She said no. The doctor said she might die in her sleep. She said she thought that would be great and that she wanted to stop thinking about the What Ifs in life. It made me rethink why I am refusing the lung transplant. I came back to the same conclusion. No, I don’t want it. Dying in my sleep would be great. If I die during a coughing fit, fine also. Spending 6+ months in a hospital with only a 25% chance of getting out, not good. If I can keep my lungs stable, I would do better over the long haul than rushing to fix something God has allowed to go wrong. So focus on today and enjoying today. Tomorrow is not written.

Let’s get back to quality than longevity/quantity of life. Enjoy each day. Enjoy each holiday. Enjoy my family and friends. So, here is how Daisy helped me spend October with some of my friends.

Warning: this question will cause you to analyze your thought processes and how you react with feelings.

5 minute meditation question….Are your thoughts and feelings true guides?

Planning for Group Events

I have been plagued with guilt lately over dealing with going to public group events. These events include movies, concerts, church and the like. There are so many things I want to go to. Concerts and church are the two highest. I just find myself struggling with even the thought of preparing for these events.

First, what will I wear that won’t bother me. That changes daily. Somedays I need synthetics, others cotton only. I know I have to take my jet pack (portable oxygen machine). That alone is tiring because it weighs after a while. Then, I have to avoid people with cologne or heavy perfumes. That is impossible. I have to put on the oxygen to prevent a severe coughing attack that interrupts whatever I am attending. The temperature of the event room bothers me. Too cold, I can’t walk after a while. Too hot, I am sweating and dying of thirst. There does not seem to be anything in the middle. Then there is the transportation issue. Driving myself sometimes seems daunting and just the thought makes me tired. Asking someone else to drive gets burdensome to those few who will. By the end of the event, I am exhausted, whether I enjoy myself or not.

Then there is the whole medication timing issue. It is sometimes difficult to work around that when the medications are so strictly prescribed. My body reacts when the time has passed to take them.

It ends up being a real mental battle to prep for these events. Somedays I am up to it. Most days I am not. Just going to work is hard enough.

This is just another adjustment I am having to make to my life. Either way, I remind myself daily that God has this in His control. I pray for serenity.

If you are experiencing anxiety over going to events, it is okay. Embrace it and understand that you are not alone. I have taken this understanding and changed my events to be “two people”/dates with my friends. They are easier to arrange and workable around my issues.

Back to School Dash/ What I learned over my summer

School returned to operation this last week. Wow, what an interesting time it has been. It amazes me how much really happens in 6 weeks. There was quite a bit of staff change over. So far, two weeks in, the changes look promising.

Let’s talk about what I have learned over the last 6 weeks.

Salt affects more than just your blood pressure. Through aggressive food and activity tracking, extra salt affects my arthritis in a negative way.
Food tracking and activity tracking are key to controlling weight and pain.
Eating anti-inflammatory has become a priority.
I did lose 10 pounds, but it looks like I lost a lot more because of the inflammation being removed.
It is amazing to feel your body feel happy after eating healthy. I have learned that I have an internal hum when I consume certain foods. I understand that hum as my body telling me that I am eating the correct food.
Yoga is a key player in my health maintenance. Massages take second place.
Finding the right vitamins can mean everything when it comes to good lab reports. I discovered over a 4 month period that “food based” vitamins are my friend. Definitely not my wallet’s friend. These type of vitamins are more expensive. The doctors did state that I had my best labs in over two years.
Wear my oxygen whenever I am going out, no matter what. If it is over 200 feet away, put it on.
Always get a “to go” box when your meal is served at a restaurant. Place half away in it before beginning to eat. Or order from appetizer menu only. I have also discovered healthy choices available in children’s menus.
Windows 10 has an alarm/timer app. Use it. I have the timer set for 20 minute increments to get up and stretch. I try to walk across the office and back. This has increased my steps and alleviated back spasms from being cemented to my desk chair.
Take time to spend with your friends. Have dates with them and just listen. Let them know just how much they mean to you. They need to know they have made a difference in your life.

Now, to the Rheumatologist report from today. He is pleased with my progress with the healthy system I did over the last 16 weeks. We discussed the problem of joint pain versus injury and how to tell the difference. He would like me to wean off of the prednisone. He has a different plan this time. Let’s see. Last two times I tried I ended up with fevers, vomiting, chills and severe fatigue every evening for a month. I am open to trying again. I know that getting off this medication would assist with more healthy changes. Other than that, until I have my next round of pulmonary tests, ct scans and labs, there isn’t much more he could suggest. Keep on the healthy system, yoga, and avoiding inflammatory foods.

What did you learn this summer?

2018 Spring Doctor Check-in

I ended April with the rheumatologist and started May with the pulmonologist. So, here is what was said…

I have unspecified/metabolic arthritis and Fibromyalgia in addition to my other issues. RA doctor wants to start me on retuxin drip, pulmonologist does not. So, in order to decide, a few tests have been ordered to see where my lungs and oxygen processing stand. That was the bad news.

Good news…my lung capacity has gone up again and my diffusion rate has gotten better also. The pulmonologist doesn’t want to add any medications since it seems I am still recovering some lung function. My echocardiogram came back that my heart is normal and pulmonary pressure is normal. (Three cheers for that.) (Now I just have to fight with the insurance company to get them to cover it.)

So, where do I go from here. Well……I have saved up some money this year to cover the out-of-pocket cost on a sleep study. So, that has been ordered. Unfortunately I can’t get into see the sleep specialist for a primary physical to do it until September 4th. Also at CT has been requested again. Let’s see if the insurance will allow it this time. I warned the doctor that he would have to fight with the insurance to get it approved. It is scheduled in October before I go back to see the pulmonologist. I am hoping that God will allow me to get the sleep study before I return also.

In the mean time, I will use the oxygen at night if needed. It seems that I may not need it anymore. But, the sleep study will confirm that.

I continue with the reflexology massages. I understand now where the fibromyalgia fits in. Everywhere the masseuse touched, I hurt. I still left feeling better than I did going in. I have moved this treatment up to once a month. Honestly, if I could afford it, I would go every week.

I continue with my self-care of a pedicure and manicure once a month. I have additionally started a weight program by Omada. I am a little over a week into it. It includes several supports, apps and a website that provides tracking and encouragement. I will get back to you on its success. This is covered by the insurance supposedly. I continue with morning yoga during the week. (Hey, I can almost put my heel on the floor in downward dog!)

I am continuing to work, even though some days the pain has started to interfere. I want to stay active and be involved outside of my four walls. Volunteering Sundays at the food pantry takes my eyes off of my problems and allows me to share my perseverance.

Overall, I am pleased on one hand and dismayed on another. I need to do some more research on retuxin before I add that to my myriad of medications.

In the mean time, I know God has me firmly in his hands. There is a reason for this, even if I am only to be a role model to you.

Just a few Thoughts…

I have had a few things rattling around in my head lately. So, to get them out, I am putting them here to share with you.

First, I want to apologize to those of you who are 15+ years older than I am. With this illness, I have found new respect for the aging process. When I was in my 30’s, I didn’t understand how those 45+ didn’t cook for their families anymore. I didn’t understand why you couldn’t do several errands in a day. I didn’t comprehend why you couldn’t go out in the evenings. Now, I get it. These things have become a challenge to me.

How do you explain to someone that you can only do one errand a day, when they remember you going all day to get everything done?

How do you explain that you can’t walk to the copier to retrieve printed documents when it is only 25 ft. away?

After having an hour talk with a person about the foods you can eat, do you not accept food that makes you sick? Especially when they took the time to go to the store and buy the food for a special occasion. (This really bugs me. Don’t ask me what I want and then buy whatever you want.)

If you know I can’t anything with gluten, don’t offer me cake, cookies, pies, etc.

I have now progressed to sensitivities to all grains. That includes corn, rice and oats along with “ancient” grains. So chips, rice bowls, wraps, sandwiches are now off bounds. So, when I tell you I can only eat at few places, meet me there.

Sleep is difficult for me either due to respiratory coughing or joint pain. Getting to sleep is my biggest hurdle right now. Understand that I need to be home by a certain time to start winding down and do what I need to do to get to sleep. I have to go through a whole process of taking different supplements in the evenings to address my nighttime symptoms. So, I need to be home by 7 pm to accomplish that.

Parents- explain to your children that I wear oxygen because I have breathing problems. I am not weird. I am ill, but not contagious.

There is more, but I ran out of energy. Time to start winding down.

New Symptoms – new problems?

I haven’t had much to say lately. My next round of respiratory tests and labs are in two weeks. I did recently undergo a biopsy of endometrial material. I won’t have those results for two weeks also. But, I have noticed some of the following changes lately. Please be advised that these may or may not apply to you and I will be bringing them up to the doctor.

Mosquito hands – every now and then I will have what I call mosquito hands. What does that mean? Well, during the process of trying to wind down and fall asleep, it feels like a bunch of mosquitos attacking my hands. Only my hands. This is not to be confused with the random pin pricks I normally feel as I fall asleep. It usually takes a dose of aspirin and a valium to get them to calm down so that I can sleep.
Avoiding grains does make a difference – I have regressed now and then to conserve on time or convenience to eating foods that contain grains that are gluten – free. This usually causes me to wake up the next morning with an achy body and/or a rash on my hands. After two days of avoiding all grains, rash is healed and body aches are gone. Avoiding grains does not seem to affect the amount of coughing.
Body breakdowns – recently I have been experiencing what I want to call body breakdowns. I don’t really know how to describe it except that it starts with me feeling a little chilled. Then it feels like a lead blanket (like the one from the dentist) being laid on me. I am usually in bed before this lead blanket feeling overcomes me. I am unable to move for about two hours. I don’t fall asleep. I don’t have a fever. But I am unable to do more than lay there and assure my dog verbally that I am okay. After about two hours, it feels like the blanket is lifted and I am fine. There does not seem to be a trigger or anything to bring it on. I actually took a day off from work, stayed home on oxygen and drank about a gallon or more of liquids to see if it helped. It did. The next event lasted only 45 minutes. But as soon as I got chilled, I drank a big glass of water and ran upstairs to lay down. I can only guess that maybe I am getting dehydrated during the day causing this event. I can’t explain it any other way. It will be interesting to see what the doctor says.
Quality of vitamins do count – I used to take a general multi-vitamin by Centrum and any generic of probiotics, calcium, biotin, iron and D3. Well…..My labs steadily were getting worse regarding my hemoglobin. So, I have been slowly switching to a “food -based” vitamin company. I do admit that they are not cheap. It has been three months since I have switched the iron, calcium and D3. My labs in February were one point higher. I have now added a more costly 16 strain probiotic to my regimen and a different multi for women over 50. I have labs in two weeks to see if the hemoglobin returns back to normal. If it does, then my investment in these particular brand of vitamins and other supplements will be worth it.
Remember Turmeric – I have recently discovered that taking turmeric at night is a must for me. I forgot one night. The next morning my hands were puffy and stiff. This herb is great for reducing inflammation in the body.
Getting back social events – I have been blessed by friends and family to have scheduled once a month for me to attend some kind of community social event. January, I saw chinese dancers. February, my son took me to a piano concert and recently this month, my best friend took me to an opera. Understand that the day before each of these events, I stayed at home on oxygen and rested. It takes planning, but each event was thoroughly enjoyed. So, if you can afford it (if you can’t- there are free concerts out there, you just have to find them), schedule yourself for something once a quarter or even once a month. Plan ahead to get rest the day before and enjoy.

I hope these few insights help you with what you or your loved one is going through. I am not in their shoes, so do not count this as advice. Count this as my walk. If anything I share helps you to feel better, wonderful. If not, keep researching. I am always looking for new information on treatments, complimentary medicine and psychological information to help me deal with my personal journey.

As God closes doors on what I can’t do anymore, He opens His arms even bigger to receive me and help me with what I can do.

How to spell Relief?

I remember the old Rolaids ads about spelling relief as R O L A I D S. I then giggle with the thought of my dad saying he spelled relief as F A R T. Mom would always chime in with B U R P. I know these may seem ridiculous. And they are. But, it is the core of my sharing today.

I have spent the last two weeks in agony. I thought for a while I was in a flare up of my RA. I started avoiding all grains. Even still, by the end of the day, I could hardly walk. I would wake up hurting and aching from my chin down. I even started taking my heavy-duty muscle relaxers and pain killers to no avail. I was about to call my doctor for advice and medication changes. Then a light bulb went off!!! The last time I felt this bad, it had been a long time since my last reflexology massage. I had one scheduled in only two days time. So, I sucked it up over the weekend and hungered greedily on Monday for my afternoon appointment.

Wow! Is all I can say. I left the site feeling like I was going to throw up, but I was pain-free for the first time in two weeks. 24 hours later, I feel on top of the world. I now realize that diet, yoga and medication is only part of my treatment plan.

I receive a variety of email for all my maladies. They all talk about complimentary medicine like herbs, acupuncture, reflexology and accupressure. I thought the yoga would take care of it all. It helps, but does not stop the toxic build up.

When speaking to the lovely chinese lady who owns the site I use about why it helps me so much. She explained that the feet are at the bottom. All the blood flows down. But, even though we have valves that help bring the blood back to the heart, the toxins still stay in the feet. Through the massage treatment, these toxins are moved up and out of the body. That is why it is so important to drink water before and afer the massage, to get rid of the toxins.

I don’t know about the scientific truth of her explanation. I do know that every time I have been at my worst, this is the only treatment that offers immediate relief. She also stated that I would get the best results by getting a massage every four weeks. I wish could afford that. I can only imagine how my life would be if I was able to do that. (I am working on a way to make it happen.) So, every 8 weeks it will have to be for now.

How do I spell relief? M A S S A G E.