MCTD = No Real Name

Spent the afternoon traveling to and from UM to see the rheumatologist.  I was curious to see what he would have to say about the $3,000 test that was run in CA that I am now stuck paying $300 on.  (I guess it is better than the full amount.)  He was pleased to see the difference in my hands and face immediately.  He explained that what I have is complicated (No S@#$ Sherlock!).  The bottom line is that since I tested positive for Sjogren’s, Lupus and Rheumatoid Arthritis and there are some other factors that I tested positive for, it has been decided that I have Mixed Connective Tissue Disease (MCTD).

What does that mean in the long run?  Who knows….To me it just sounds like they have no clue what is really going on with me, but the doctor is happy the treatment is working.

So, the autoimmune medication is being upped and I have been put on progression plan to down my prednisone.  I need to increase my exercise a little bit more and take off the weight I gained from the prednisone.

Nothing new there.  The only thing new I discussed with him was the burning tongue and tingling lips.  He thinks that it could be symptom related instead of medicine related.  I guess I will see as I transition over the summer to a higher dosage of the medication and get off steroids.  I will still be on the anti-bacterial due to the medication.

He did give me an exercise to help with the arthritis in my hips.  I will start that Saturday along with pushing 6 blocks for the doggie walk.

It was a cold

Since my last endeavor with this page, I wasn’t sure if I had a cold or not.  It was a cold that aggravated my symptoms.  So, I emailed the doc and he had me raise my prednisone until I got through it.  I just recently lowered the prednisone again.

Had my second set of labs done on the treatment plan.  Doc said they looked fine, even though my glucose was up.  He said that was the prednisone.

New symptom – tingling/burning tongue and lips.  Could be the sjogren’s making my life more interesting or the medication.  I guess I will have to wait and see.  I emailed the doc for clarification, but I think he went fishing for weekend.

I have been under an unusual amount of stress between being sick, my mentally ill husband and the increased amount of reading for finishing my degree.  Today was the first time I didn’t feel like I had clock over my head ticking.  I keep reminding myself that the finish line is Christmas.  I just have to hang in there until Christmas.

Not Sure How to React

So, today I am not feeling quite right.  Now, due to so many changes lately, I am not quite sure what to attribute my ill feeling to.

I changed my prednisone on Friday down to 10.  That is great.  But, yesterday I had a reflexology foot massage.  I got nauseous during the massage (it sometimes happens due to the release of toxins).  Now, today my right lymph node under my tongue is a little enlarged and my throat hurts.  So, the question is am I getting sick, or is the aftermath of a wonderful massage or is it my body reacting to the prednisone reduction?

Go figure.  This is so complicated sometimes.  So, I am drinking extra fluids, drinking soup and I took some extra vitamin C and probiotics just in case.  I guess tomorrow will tell me the truth.   If I feel the same or worse, I know I am getting sick.  If not, then it was the medication adjustment or the massage.

Month Check Up – Good News

Good news.  The medication seems to be working.  I took my notes to see the doctor.  He was very pleased with my progress and has reduced the prednisone considerably.  I had already asked two weeks ago to have it reduced because it was starting to over charge me.  Insomnia city!

The following was decided:

  • No more advair until completely off prednisone.  No need for double steroid use
  • Continue with labs every four weeks to keep track of blood counts
  • add anti-bacterial medication for next three months, three times a week.
  • Keep walking four times a week and try to increase distance beyond 5 blocks
  • Sjogren’s syndrome has been officially added as part of diagnosis.  He still thinks that I may have more than one auto immune condition.
  • Prognosis is good.
  • Special sleep test, bone density test and full pulmonology tests are to be done before return visit in June.  Depending upon those tests, I may be able to get rid of night-time oxygen, singulair and other allergy medications.

Now, let’s talk about this from a long hindsight back to my childhood.  We briefly discussed how I have always responded well to steroids.   I told him that my mother and sister’s both stated how I had a dent in my butt as a child from all the steroid shots.  Supposedly I was born having an asthma attack (according to the stories from mom).  Asthma was just being treated by new drugs at that time (mid 1960’s).  Who knows the side effects of those drugs that I took as a child.  You can barely find a trace of them on the internet.  In fact, one I remember clearly is not found anywhere except as a brief mention when I searched  for another medication.  Airayne.  It was a capsule that had a special inhaler that punched holes in it and then you sucked it in like today’s version of advair.

Doc said that my auto immune condition has over ridden the asthma.  That made me think back to my childhood.  Maybe all those “asthma” and pneumonias I had may have been an auto immune condition all along.  Yes, the asthma meds worked.  Or did they mask the real problem all these years?  It has me wondering and I will be doing more research as I go along.

I did tell the doctor about how all my rashes, itchy skin and open sores have just gone away.  My skin has never been so soft.  My allergy eyes and post nasal drip have completely gone.  He did say that I still have crackles in my lungs.  That is the scar tissue.  He said the skin clearing up is the cellcept working.

I am also grounding.  He didn’t quite know what to say to that.  He said he had no information, but did put it in my chart.  It is supposed to help with inflammation.  I am sure it is helping the medication to do its job more effectively.

I mentioned about my hip hurting again as I reduced the prednisone last week.  He said for me to continue to track what symptoms return as the steroid is reduced over the next 12 weeks.  If anything unusual happens, to please email him.  I also said that I was not as slimy as before.  He gave me a questioned look.  I told him that the post nasal drip has stopped, I wasn’t coughing up clear goo anymore and that overall I felt less slimy.  He attributed that to the cellcept also.

So, Even though I have over $300 in doctor visits and several sets of trips to the vampire (Quest) over the next several weeks (and months).  Not sure if insurance will cover sleep test or bone density test, it is okay.  Somehow God will make sure it gets all done, the money will be there, and I will be moving forward to being more comfortable.

I did complain that the exhaustion factor has not really changed.  He said that since I have gone so long with minimal exercise, it will be while before I regain my strength.  He said that depending upon the lab results in June, he will refer me to pulmonary rehab to help with it.  In the mean time, keep walking the dog.

Personally, I think it is God blessing me.  Yes, He is using medicine as a tool.  I know that I have team of women, men and leaders praying for me on a regular basis for health and endurance.   Things all turned around when a group of godly men gathered around me at church and prayed sincere fervent prayers for me and my family in February.

There are still bad days.  But now the hope I had in my heart is being felt as hopefulness.  I look forward tomorrow’s promise of a new day.  May it be a great day.

 

 

Two Week Update

It has been a little over two weeks since starting the cellcept and the prednisone.  I have seen another doctor and wow, did he inform me of a lot.  It has been over 11 days since my fingers have turned blue.  Amazing how something like that I can count.  I just never really understood how bad I had gotten.

But, getting back to the medical stuff….Endocrinologist who has been treating me for GERD and fatigue was glad to hear I am no longer terminal.  He sort of agreed with the treatment plan, but was extremely concerned with the amount of steroids I am on.  I informed him that the doctor was going to wean me off at my next visit.  I explained to him about some of the side affects I am experiencing.  He stated it was normal with the prednisone.  But, he did recommend some tricks to override the stimulation of it so I can sleep.  He is trying to get the insurance to pay for a baseline bone density test since heavy use of steroids causes osteoporosis.  Let’s see if that happens.  Also, he upped my GERD medicine since it isn’t making it through the night anymore because of the steroids.  I am okay with that.  The B-12 will remain the same.  My depletion will not get better with steroids or without.  So be it.

In the mean time, he stated that he cellcept will induce menopause.  I was on the way there anyway with reduced oxygen.  So, he wants to watch my calcium even more closely.  We discussed that since I have GERD I am unable to take the pill form.  I have a calcium powder that I may start sprinkling on my food instead.  He said that way is less intrusive to my stomach and will help fight the osteoporosis with the steroids.  I am going to wait for next week’s labs to see what the results are.  I am trying to eat a yogurt every other day for the probiotics and calcium.

I know – eat my greens. They have it also.

Overall.  I am feeling so much better.  The hard part is trying to balance out what I used to do, with what I can do and what I want to do.  I keep over doing it on Saturday because I feel so good.  Then I end up exhausted on Sunday and Monday.   So, on Saturdays I am allotting 10 minutes for one chore.  Whatever that may be (sweeping, mopping, scrubbing tub, etc.).  After that, no more.  Still walk Daisy on Saturday morning the 5 block trip we do.  I am not ready to expand the walk yet.  I am still a little winded after the 5 blocks.  But, I have been able to up her walks during the week by two-three times.  She is happy about that.

I have a lot of labs and doctor visits next week.  Along with some fun planned with Groupons for Spring Break.  My college work won’t stop.  But, I can at least have a small outing each day to be with a friend.  Follow-up after Easter.

He is RISEN.

Two Weeks of Change and Grounding

It has been officially two weeks being on the new medications.  I feel so hopeful again.  I never really lost hope, I was just so used to trudging through the day struggling that I didn’t realize how much I was NOT enjoying.

My fingers haven’t turned blue in a week and a half.  My face and lips no longer have a blue tinge to them.  I can breathe without feeling like there is an elephant on my chest.  He still has a foot holding me down, but I can deal with that.  The coughing has almost completely stopped.

I have been able to take Daisy for a walk three times a week again.  Going to get a hair cut or to the store after work doesn’t seem like a herculean adventure anymore.  I wasn’t even totally exhausted after working the food pantry last week.

I realize that these results are due to the prednisone and that once the doctor starts weaning me off the high dose, some of the previous symptoms may return.  That is okay.  I am able to do basic things in the house without having to plan my whole day around a 20 minute chore.  I have found myself overdoing it because I am so excited I can do these things without thinking if I am ready to do them.

I did start something extra that I will discuss with the Dr. about in two weeks when I return.  My sister has sent me some grounding information, sheet and cuffs.  The help has been dramatic.  The puffiness in my legs have gone down and my skin is softer.  The arthritis in my hands are better also.  Could that be the prednisone?  Maybe.  I want to attribute it to the grounding.  I bought grounding shoes and have worn them three days now.  My ankles have stayed the same and my feet were not as tired at the end of the day.   I am logging all my changes and observations with the medications and grounding.  I have shared this information with a friend who is in the science field.  She is so intrigued she is getting a sheet for her and her husband to see if it will help them with their issues.

 

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.