February 2016 – Alayon Inspiration

Feeling HOPE

I know that this feeling is temporary and I had not ever really let go of it. I actually felt hopeful today. I had a fair day yesterday. Still coughed in church. I think it is all the perfumes, once the sermon starts the coughing abates. Today was the first day my fingers did not turn blue after lunch. People even commented that my face had color and my cheeks looked rosy. I wear makeup, but even that can’t hide when you are oxygen deprived. One close friend said I didn’t have a blue tinge to my face anymore. Hallelujah!

This is only day three into the treatment prescribed. But, I feel so much better already. I know it is the prednisone relieving the inflammation in my lungs. I don’t care. I will take it. I even took Daisy for an afternoon walk to see the local pharmacist who loves her. She even noticed I looked different from Friday to today. She said she had seen good things come of the Cellcept in other people. It was encouraging to hear that after reading all the dos and don’ts and side effects.

I also deeply believe it is God listening to all the petitions on my behalf and giving me a boost. Last week was almost more than I could take with the cars and shopping when I was supposed to be resting between terms.

All I can say is “Thank You God”. I was thanking Him in the furrows of depression before today and I will again when they come back. I know He has me walking this walk as an example to someone else. Even if He does not heal me or let me get too much better, I know I am loved by Him.

Life will never be the same. Maybe it shouldn’t be. I have to be extra careful with my public exposure. I will still have to wipe down my desk and office each day, watch who I allow in my office and work around physical obstacles that didn’t used to be difficult. Now add labs every four weeks to monitor blood counts. I will make it work.

Update 1.1

Yes, I am trying to be a comedian by using computer lingo for my update. I am trying to fight off the abyss that yawns before me of depression.

So, a friend went with me to the doctor yesterday since my husband “wasn’t feeling well”. He is never feeling well. He is mentally ill. That is besides the point. I just had to throw that out there.

Pulmonologist does not agree with rheumatologist about diagnosis. He thinks that there is more going on with me than Sjogren’s Syndrome. Even though sjogren’s contains everything I am experiencing. I still have interstitial lung disease, but they added connective tissue disorder. Whoop de du! But, he did agree about the treatment plan. Today I started generic versions of Cellcept and prednisone. The prednisone will be tapered off over a period of time and the cellcept will be increased. I must have monthly labs to make sure I am not having any additional infections or unusual blood counts. I go back in four weeks for a follow-up and possibly a change up in medication. He did mention that if I do not get better, the chemo therapy route may be the next course of action. I really don’t want that. The good news is that if this works, he might take me off of some of my asthma medications that do not seem to be helping. In fact, they may not be working at all.

My sister has sent me earthing cuffs and the book that goes with it. It is supposed to help with inflammation which my body seems to have plenty of. She has been doing it for three months and has been able to cut back on her amount of arthritis medication.

I will need to drink even more water than I am already. What else is new? Watch my weight even closer due to the steroids. So I might want to back off on some of the candy I munch. Having a gluten free diet is a great help. That already is one of the things that all the websites have said is a great help with any of these conditions. Wheat increases inflammation, especially in the digestive track.

Totally off the subject – One of my friends has become soy sensitive. Like super extra sensitive. I am helping her go through the detox time that happens when you drastically change your diet. It takes about a month as you experiment with what you can and can not get away with. She has also decided to go gluten free also to see if it will help with another condition she has. Her husband and I are co-workers so when she has questions, she uses him as a messenger. I don’t mind. If I can help guide someone to being healthier. Wonderful. It is an expensive adventure to find gluten free and soy free products. They are out there, but at places like Whole Foods, Trader Joes and Fresh Market. You pay the price also.

Let’s end this post with some prayer. Close your eyes and thank God for this day and time. I will be okay with or without this condition. As He walks holding me.

Psalm 100:3 Know that the LORD, he is God! It is He who made us, and we are his; we are his people, and the sheep of his pasture.

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!).

Anxiety Central

Please don’t lecture me about casting all my cares on Jesus. I know that. But, sometimes my heart just doesn’t get it.

So, I busted my butt this weekend to end my school term on Saturday. As of right now I have A’s in both Human Resources and Marketing. Term actually ends tomorrow night (Tuesday). I resume on the 2nd of March. Finance and Managerial Economics are my next two classes. Interestingly boring- ugh. I am getting near the finish line.

In the mean time, I have spent an unusual amount of time coughing this weekend. So much, that my back is killing me today. I took it easy at work today. I didn’t want to start a coughing fit.

Additionally, my husband and son were driving me nuts talking about fixing the cars. I finally told them to go to CarMax on-line and see if there was anything they would be interested in. Nate found something. So I went with him to see a nice 2006 Honda Civic. The manager was willing to hold it for Nate so that his check could clear by Wednesday. Now, my car, the sonata is making this horrible grating noise as I drive. I am about ready to cry. At least if Nate can get his car on Wednesday, I can drive the Nissan until we get the money to get me a car. My husband was finally convinced to cash in his retirement money to help.

That was a whole ordeal in itself. I had to explain again what I explained in November, again in December, again in January. But, it is done. We are paying a penalty. But, we are desperate. Then my husband informs me that the car HE was looking at is no longer available. (BOO HOO! my super tiny violins are playing.) I told him that a car will be available that we will like by the time Thursday rolls around when the money clears the bank.

I just hope I can keep the Sonata going until Wednesday. I have a heart attack every time I hear the metal grind. Let’s be honest. God has to keep the car going until then.

I am also excited about seeing the Doctor this Friday. All lab results should be in and a plan of treatment should be prescribed. I do so want a plan of treatment. This weekend was really rough. Some days I am really scared of how bad I really feel.

Psalm 95:3-4 For the LORD is a great God, and a great King above all gods. In his hand are the depths of the earth; the heights of the mountains are his also.

Is it Lupus or Not?

Well, still not gotten a final word, but getting closer. I spent over an hour with the rheumatoid specialist going over every little detail to determine if what was happening was a symptom or not. After about an hour and some diagnostic tests, the doc said it looks like Sjorgren’s Syndrome. Just to make sure he has ordered some special labs for confirmation. It looks like my body may have been attacking itself for over 4 years now. It just took the forever chest cold to bring everything together in a whole overview. They syndrome is similar to lupus, so it is easy to misdiagnos.

The doctor said he would be speaking to my pulmonologist in the next week along with a memo suggesting a treatment plan after the labs come back. He said he would follow up with me via phone next Friday. He did order a special lab that has to be sent to California. I told him that I couldn’t afford it if the insurance didn’t cover it. He said that he would make sure the insurance covered it. I sure hope so.

He even gave me a homework assignment to look up the syndrome and the medications he put on paper for me. He said that way I will be prepared when I see the pulmonologist in two weeks and be able to tell him which medication may be best. He did state that he would work closely with the pulmonologist to make sure only one doctor is overseeing all the medication and treatment.

I told him about Daisy and showed him a picture. We had happened to be talking about my decrease in exercising is how she came up. He showed me a picture of his maltipoo and his pug.

So, at this point, I am neither happy or sad. Just in limbo emotional wise. I saw a video on Sjogrens.org that totally explained all my symptoms!!! Feel free to explore the website. All my mysterious rashes, fevers, malaise, fatigue, coughing, eye ulcers, left leg motion loss, and more are explained now. Even the afternoon brain fog that I thought was a product of lack of oxygen is also part of the syndrome.

I will tell you to avoid the Quest Labs at UM though. The lady was in a rush and butchered my arm. I know the one over by Chuckee Cheese in Hialeah is a pain, but their techs are easier on the arm.

So, we end on a flat note. Neither good, nor bad.

Closing Pillow thought…. Psalm 89 – You rule the raging sea; when its waves rise, you still them. vs 9 (NIV)

How Do You Explain your condition without sounding Self-Important

I had a wonderful time today spending time with a colleague at work during our annual African American Luncheon. As usual it was good food with good friends. My usual group of friends wanted me to sit with them. I decided to go out of my box and sit with a different group of people. I ended up at a mixed table of history, science and math teachers. It was wonderful.

While waiting for the function to start, I was discussing with my son’s prior history teacher about how he was doing with cancer. Somehow we ended up talking about me. Conversations take on a life of their own. He asked how I was doing and what was my prognosis. Since I don’t really have anything concrete yet, I explained that it looks like I have Lupus that is attacking my lungs and my heart. He just looked at me. I was trying not to be explicit or get into the details. I was talking to a man who had intestinal cancer 5 years ago and has had 5 back surgeries.

He asked about treatment. I told him I have not started one. I still have two more visits before being allowed to start treatment. He admitted he knew nothing of Lupus. He asked what were the medications usually given. I told him that it is usually steroids or a type of chemo therapy to get the condition stable. He didn’t have a comment.

Because I didn’t want to compare myself to him, I told him that I was continuing to work until I am told I am not to. In the mean time, life goes forward. He wished me luck. I thanked him and stole away as soon as the next part of the function started for professional development.

I mean, how does one explain that you have been afflicted with a condition (can’t really call it a disease because no one is quite sure what causes it) that can kill and may have already put one of my feet in the grave.

Honestly, the last two weeks have been hard. My breathing has been harder to do and coughing fits twice a day no matter what asthma meds I take is really taking a toll on me. I try to be strong. But the tears still come and I worry that my lung function is getting worse.

Some days the next two doctor appointments seem like years away even though it is only a week.