Category: Medical

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

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

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

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

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

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

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

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

My Goals for the next 8 months…

1.  Finish school

2.  Have a party during winter break for my birthday

3.  Go to my college graduation in Chicago in June

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

 

So, today being the first day of summer break, I started it off with pulmonary labs at the UM.  I guess maybe I should have given myself a day off before doing that.

I was at the UM as requested and processed through admissions.  I was then instructed on how to get to the 4th floor for testing.  The normal spirometry was done.

Then the 6 minute walking test.  Now, understand I have had these before.  One last fall, where in 4 minutes I was below 90%.  Another this last spring where I did not go below 93% oxygen.  So, to my surprise, after 6 minutes of walking I was at 80% and my fingertips were blue again.  At least now I know what blue fingertips mean….I need oxygen.  As soon as they put me on the oxygen I went up 100% immediately within a minute.  So, I was instructed to do the test again with oxygen.  I immediately dropped to 89% and stayed there the whole time even dragging an oxygen tank behind me.  The technician said I was at the border of 90%.  The doctor will have to decide about any further action.

Here I was thinking I have been on meds for a while now, feeling good, looking good.   I should be able to breeze through this.  WRONG!

I know I am not a doctor.  But, this is bad.  I am worse than when I took this test last September.  I am suppose to be getting better.  I feel better.

Next round is blood work on Friday.  Then the following week has me seeing a sleep study expert to see if my oxygen problem is sleep apnea related or just scar tissue related. (I think I already know the answer to this one.  But the sleep apnea machine is cheaper in the long run.)  Then it is back to the main doc the very next day for consultation.

It looks like I might need to order a tank for hurricane season to have in the event we lose power this summer.  So far, I only use the oxygen at night.  It looks like I really need it when I am walking.  How depressing.

I was looking forward to walking in a 5 K this fall.  I guess I set my hopes to high.

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.

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.

 

 

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.

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.

 

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)