General Advice – Page 3 – Alayon Inspiration

Traveling with MCTD

It is with great joy that I was able to spend the weekend in another city to receive the acknowledgement of finishing my degree. But, that is neither here nor there. I am writing to let you know about how my physical traveling went with being as ill as I am.

I have to first give credit to those who helped me get the POC (personal oxygen concentrator). I would not have been able to venture beyond the confines of Miami without it.

Here are some of the things I noticed….

I started having extra coughing attacks about two weeks before the trip. I am assuming that the increased anxiety about the trip caused a flare up of my symptoms.

Of course, the day before leaving, I had the nervous stomach and my period started. Don’t you just love stress.

It took a little longer to get through the ticket counter. This is due to the fact that not all airline agents are familiar with the new portable systems.

Do request wheelchair assistance at all phases of your traveling. This can be done after purchasing your airline ticket. You will get a phone call a week before explaining the limitations of the use of the particular machine you are using. I happened to have a unit that has no limitations during the flight.
Do get to the airport early (2 hours) as suggested. Some airports provide a wheelchair immediately, others make you wait in a designated area.
Do dress comfortably with easy slide on shoes, yoga type pants and a sweater.
Do have your medications in the top of your carry on in their prescription bottles in a zip lock.
If traveling with a POC, make sure all batteries are at a 100%. Pack all batteries and chargers. I packed an additional nasal canula hose in case there was problems. The POC does not count as a carry on.
If you have dietary problems, pack snacks in your personal carry on (purse) near the top for inspection. The airline I chose did not have gluten-free snacks. I was grateful I packed my own.
If you are staying at a hotel, at time of making the reservation, ask for a room with at least a refrigerator and foam pillows. If you are in a wheelchair or using mobility equipment, you may want to ask for a handicap room. This reservation should be made well in advance and any specifications (refrigerator, pillows, etc) should be reiterated in the comments field. Call the day before and confirm reservation and check in times.
Pills, eye drops and the other medications. Take two-day extra supply. With using restasis, the prescription label is on the outside of a fairly cumbersome box. I was able to tape my supply to the lid and use that as the prescription instead of carting a whole box. I did not need my extra days of supplies, but it was nice to have them.
Stock up on baby aspirin. I had three little bottles of baby aspirin in my personal item. I was not questioned, where I saw others with bigger bottles of pain killers were examined.
Do expect to have extra body aches if suffering a related condition. Aspirin and I were best buddies during the trip.

The one thing I did find I had a hard time with was staying hydrated. Once in the wheelchair, you are taken straight to the gate. So, bathroom break and getting any drinks is out of the question. Upon arrival on the other side of your destination, you are taken directly to arrivals section to be picked up by your chauffeur. I was fortunate that I had a friend who met me at my destination and took me grocery shopping to get snacks and water for my room.

I did take advantage at the restaurants of any free refills. I also used the coffee maker in my room for tea and coffee. Be advised that the water in other cities may taste different. I found brushing my teeth unusually ucky at my destination due to the different mineral composition.

Eating can be a challenge. Of all the places I ate at, only one waiter announced that he would be more than willing to help with selections for food allergies. I was impressed. It was an upscale setting though. Most others, you just have to read the menu carefully and ask if you are unsure. I did not have to starve through anything. Five Roses PubGraduation At the Green Burger without the bun and fresh made fries.

As you can see, I wore my POC for the event I was in and during all outings. Sometimes I needed it when eating, sometimes not. Most times I had the oxygen going anyway. It just made talking all that much easier. I did have a couple of coughing attacks. But nothing like I have in the past.

Also, I did find myself feeling light headed at about 30,000 feet when the plane levels off. I checked my hands and lips, they were normal color. I put the oxygen on and the light headedness went away. So, feel free to oxygen up as needed.

When we were in a park area, I actually saw someone else with a POC. It is nice to see people allowing themselves to not be contained by the limitations of the 25 foot cord to a machine.

I will admit that after two days my back was spasming something awful. But, I am not used to wearing it almost all day for days in a row. I guess I will have to work on that this summer. (So, I look like a mini tank. At least people will get out of my way.)

I only had two people ask me about my need for the oxygen. I explained that I had a condition that affected my lungs from working properly. They were fine about it. They then congratulated on me being mobile and taking on the world.

I even met a gentleman getting his doctorate after suffering a brain aneurism two years ago. He was told he would never talk, walk or eat alone again. He walked to get his doctorate and plans on getting another one soon. He even has plans to start something to help people like him and me to continue our education even despite our physical limitations. Also crossing the stage was a woman with a walker and a gentleman in a scooter getting their master drapes for their bachelor’s.

What is the bottom line…..plan head accordingly for travel. Be prepared to be a little dehydrated. Try to have a connection at the destination to help with dietary and hydration needs. Don’t be surprised if your hormones and conditions flare up before the event. Do pack light. (I wish now I had used a slightly larger carry on and put my purse in it to make things a little less cumbersome.)

Most of all, thank God that He has allowed you the opportunity to travel.

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.

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….

Going SWOT (Strengths, Weaknesses, Opportunities and Threats)

I am feeling a little depressed tonight. I just finished a personal SWOT analysis for one of my management classes to finish my degree. This is a higher level class and part of it will be doing an objective/goal resume that is only one page. Part of this process includes doing this analysis.

I find that through the last several months, as I have done this process several times, is the uncertainty of my health. My health progression has slowed down, but not stopped. So, why bother doing this analysis if I may be on disability in the next year? I keep asking myself that. I guess I am an extreme optimist or self punisher. Mostly, I think it is hope. I don’t want to get my bachelor’s that I have worked my ass off for to have it just sit on the wall and not get used.

Another problem is my lack of spanish. I don’t know about you. Last time I looked, Florida was part of the US and English is the primary language. Who do these immigrants think they are fooling by not learning English? Don’t they realize that they can’t really go anywhere outside of Dade and Broward county if they don’t learn English. Even in Texas and Southern California where more Mexican style of spanish is spoken, the majority of the immigrants speak enough English to communicate their needs. Not here….Most of them assume I speak spanish and that I am from Cuba. I am so Rocky Mountain, you can’t get much more Heinze 57 mix American than me. I don’t even look hispanic. Yet, everyone wonders if I came from Venezuela. Really? Just how much lead did you get as a child? I have learned some key phrases and numbers as needed for my job. But, you came here to have a better life. Learning a new language is part of that change. My phone message isn’t even in spanish.

I personally think that the main office loves it when I cover for the receptionist just so they can hear me tell almost 90% of the phone callers I don’t speak spanish.

Getting back to the point of this post, I find a lot of my goals and objectives revolving around me finishing school. It is done in December. But, some days it seems like an eternity when looking for prospective jobs. Other days, it seems just around the corner and I am excited.

My health is holding me back this very week from applying for a couple of jobs. I don’t know if a new employer would be willing to put up with all my doctor appointments. I know that they have to put up with my disability accommodations, they aren’t extravagant. I can still sit at a desk, type my heart out, organize meetings, arrange calendars and answer the phones while pouring coffee and assisting a customer.

Then there is Daisy. My munchkin. Would a new employer be willling to allow me to bring her to work as an ESA? I know I would just have to ask. But, I get to do that now.

What about the money? I really could use the money. But, would making more really make me happier? Will my husband’s disabilty check make it feasable for me to stay at my current position?

These are all things God and I are going to have work out. Actually, that I am going to have to take His guidance on. May my ears and mind be open to His shepherding.

Some Relationships Last

I have been reminded lately that some relationships last beyond a piece of paper or what others think.

A friend of mine, her ex-husband died yesterday. She was at his side throughout this last month every day. She was there when he finally passed. Did she harbor animosity towards him? I think not. She took vacations with him with the grandchildren. Her son and daughter still had a good relationship with him. I don’t know the story behind the divorce. Nor does it really matter.

It matters that she cared enough to be there in the end for him.

In discussing this with my son, he asked my why I had not left Dad. He said that many other women would have left a lot sooner. I explained that I had visited an attorney in the beginning when he first became mentally ill. I was informed that leaving him would not look good in courts due to his disability and judgement would be for me to pay alimony. Additionally, when we got married, we promised to never get divorced. That promise was between us and God. Have we threatened to get divorced from each other? Yes. As I tried to explain to my son, which I know he does not understand because it is a relational issue that has to be experienced. It just didn’t make financial sense at the time. God has in the mean time tempered my heart to be more understanding and deal with his idiosyncracies.

It is through this process that I have understood that getting a divorce would not have made anything better. The years have made me stronger. This is a hard concept to convey without the other person having gone through it themselves.

So, if you hear of a friend being cordial to their ex, be a little understanding. There is a relational bond there that you and I may not understand.

Anxiety Central Repeat

Wow, what a week and there is still one more day to go. It all started Saturday with me finishing my class exams and then going with my son to check out a car. My son was able to get the manager of the car place to hold the car until Wednesday when he could get the money for the down. Then the Sonata on Monday started making this horrible grinding sound when the car was in motion. I figured that either the shocks had finally given or the brackets that hold the engine had given out and either or both were rubbing on the drive train. Either way, I was having an anxiety attack all the way to work and home.

Monday got even better when the psychologist called in sick, an auditor showed up to review the files, there were several meetings scheduled and one of our emotional students went off the deep end. I was so stressed out, my heart started hurting. I locked the door, had a coughing fit and then went for guinea pig break in my friend’s classroom. Lunch never happened due to the chaos. I couldn’t wait to get home. Then my husband informed me that the car we had been looking at online was no longer available. I told him about the car sounding like the engine was on the drive train. He then pestered me all evening until past midnight. Around 11 pm the car came available so I had him place a hold on it for us to go Tuesday afternoon. I was so anxious about going to get a new car I woke up at 4 am on Tuesday morning.

Tuesday- press repeat on chaos from Monday. At least there was no auditor. But the student mess from Monday just rolled over. I left at lunch time as fast as I could. I could hardly handle the car sounds coming home. If my butt cheeks had been any tighter, they would have created a vacuum. I had my husband drive the car to the dealer. Even he had doubts we would make it there. I was in my head, “Oh God, Oh God, Oh God” over and over all the way there. I knew I would call a friend or a taxi to get home. I was not returning with the sonata. We got to test drive the car and loved it at the dealer. I am supposed to go back tomorrow to put the final down on it to be without loan. I am hoping the wire transfer we requested will be cleared by then. I slept like a baby. On the way home we went to dinner. This is rare treat to get dinner out with my husband. So, we went to Bryson’s. I quietly thanked God in my heart for His hand in making the vehicle purchase possible.

Wednesday, more chaos, more problems. Is the weekend here yet? Some other political things happened in the office to set me off, so I ended up having to take a guinea pig break again. There is just something calming about holding a nice soft warm fuzzy animal. After surviving the day, I rushed home to help my son with something to find out my husband now felt ill and couldn’t go back to the dealer with him to pick up the car. (Boo hoo! I wanted to strangle him.) I had set my eyes on a big glass of plum wine and a bubble bath. Instead, I grabbed a book my sister had sent me and a bottle of water and jumped it the car with my son. He got the car and we were home by 6:30 pm. I made dinner and then took my bubble bath. I was informed after that the roaches had helped themselves to my family’s dinner. My fav. The little buggers come up through the kitchen sink drain.

So, Thursday, today, I am so excited about going to see the Dr. tomorrow. I want a diagnosis and a treatment plan. If he doesn’t want to start treatment, I am going to beg for a cortisone shot. I am just having too many problems. Today started off with a parent showing up 2 and a half hours early. I told her that was unacceptable. But, I was unable to find anywhere else for her to wait. So, she got to watch me work for two hours. I was not too upset about it. But, another parent was running an hour late. So, now the meetings were backed up. Another parent showed up with a cold. (Really? If you are sick, please stay home!!! I am trying to stay well here.) The meeting can be done over the phone. Then a teacher invited themselves to that meeting with the sick parent to give her a reality check. Next? Well, nothing gets me going as when a Region person or District person calls and my boss refuses to take the call (or any call for that matter) and passes the buck to her partner with out any warning. (Come on, you hate it when it is done to you, why do you do it to others?) Luckily the other person rolled with it and took care of it.

In the mean time, I finished a lot of paperwork in those two hours since I really couldn’t take care of anything else with a parent watching due to confidentiality issues. I then proceeded to work on scheduling only to have the Monday psychologist call again and ask for two more days to be rescheduled. I kindly but firmly told her that I really needed a replacement day if things were to get even a little bit caught up. (You see we have not had a psychologist at all this year.) Then I have my Friday psychologist begging to only schedule half a day so she can make up meetings at another school. (NO! We had to wait half a year and now you just decided that the other school is more important. Stop it!) I said yes for one day and no for the others. I can get almost 8 meetings out of the way if the scheduling is done right. It doesn’t matter to me if the parent shows or not. I just need a body representing the psychology department on those days.

Back to tomorrow. A friend is going with me. Since I took the day off, I am going to sleep in, have a fresh pot of coffee and make French toast for her. Then we will use public transportation to go to the UM doctor and hear what is to be done about my condition. I can tell you what I want to hear. Honestly, only God can enact His hand for that one. Considering the increased coughing, blue finger tips and increased anxiety attacks, what I want to hear will not be on the menu. After we are done, we are going to the bank to get the money to pay off the car. After that I have dinner reservations with the guinea pig teacher in Coral Gables.

I really wanted this week to be restful. It was not. I am glad that everything that had to get done, is done now. I can refocus on school resuming next Wednesday. Finance and Managerial Economics (ugh!).

Let’s Talk about Homeschool

I have seen a trend lately with homeschooling here in South Florida. It is on the rise. Now, honestly, I have seen it go good, bad and then very ugly. As an employee in a school and a parent, I understand the parents point of view. They can control what is being taught, when it is being taught and accommodate any special appointments or relocations easily. What the parents don’t see, I get in my office…..Here are few of my insights to encourage you keep your child in public school.

Real world is mean. It doesn’t care if your child is sensitive or not.
Mental illnesses are fostered and coddled more causing the child not be able to cope.
It takes work to make sure your child is socially acclimatized. If you aren’t willing to drag your child to various clubs, homeschool groups and sports, then you really don’t care.
Once you start homeschool, sending your child to public school will put them in a state of shock they will never recover from.
Some homeschoolers never develop the skills to communicate with their peers.
You have taken the opportunity away of my child being your child’s friend.
You have taken food out of my mouth. By keeping your child at home, they are not counted for funding for the public school system.
The curriculum will eventually get beyond your comprehension to assist with. Who do you hire? Guess what! A teacher!
You have to have the student’s portfolio review every year to make sure they are on academic level. Guess What! A teacher is the one certified to do that! And you have to pay them.
Homeschooling does not stop drug use, teenage pregnancy and malbehaviors. It fosters negative behaviors because there are no other positive role models

I have seen the drug use in home schoolers. I have seen teen pregnancy due to the fact that the girl grabbed the first guy who gave her attention. I have seen a young lady graduate home school and go to Moody Bible Institute and become a wonderful preacher. I have seen other cases where the young ladies married the first guy who said boo and ended up in domestic violence shelters.

Please, please understand, that homeschooling is admirable. I even dabbled in it with my son for Pre-K. He was driving me crazy. It was a way to keep him busy while I worked with his sister.

But, you have to take the time to make sure the child is socially active. I have been to many functions where the homeschooler will hang out with the adults and ignore age appropriate interactions with other students. Also, if your child has a learning disorder, you may end up feeding it instead of helping the child to overcome it.

As usual there are always two sides. I know plenty of moms who have made homeschooling work. Those moms really worked at it. Don’t go into it thinking it will be easy. Be warned about the down sides and really think and pray about that decision.