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.

End of Year Blues and Joys

As this school calendar year draws to a close, I find myself preparing for my own graduation.  I usually volunteer at  my employment to assist with the seniors graduating.  They will be fine without me.

I originally went back to school to force my employer to give me a raise.  Unfortunately, it doesn’t work that way.  Wish it did.  More secretaries would go back to school and get their degrees.  Now, I look at the diploma and pray that God will take the knowledge I have learned and put it to use.

In the mean time, a friend is working with me to have a graduation party.  I originally wanted to open it up to all my work and church family.  But, that is unrealistic and expensive.  So, working with a budget, we came with a list of those most encouraging to me during this journey.

So, if you were not invited, please don’t feel slighted.  I want to take this time to thank all of you who cheered from behind the scenese with prayer or even encouraging thoughts.  God heard you.  I want to thank all those who helped me financially, physically and with verbal encouragement.  If I could, I would have you all in one room and thank each and everyone of you and raise a toast in your honor.

Some of you have encouraged me from afar.  Some close.  Some as mentors and footsteps to follow behind you.  Others have moved away or passed.  I hope you know that I have lifted you up to God for blessings.

For those of you who subscribe to my blog for the medical or information, you get a thank you also.  It is encouraging to see that you signed up as a subscriber.  You have read about my trials and tribulations with Social Security, mentally ill family members and problems at work in addition to my failing health.

People ask me about where do I go from here with my degree?  Honestly I don’t know.  I would like to think God has a purpose for it.  Even if it won’t be used in the business world, it was a great distraction for me during these last two years from my own problems.  It was also a great excuse to get away from my family members because I had to type a paper, research to work on or other homework items.  If it ends up being an expensive bucket list item, I am okay with that.

So, in closing.  Thank you all.  May this part of my journey be an inspiration for you to consider finishing something you started 30 years ago.

 

 

Beware Mother’s Day

This day comes every year around the second Sunday of each May.  I have gone from enjoying it, to loathing it, to completely not caring either way.  I remember the days I enjoyed the children bringing home craft gifts from school and making me go to lunch with them on that Sunday to be presented with a cute gift they thought thought I would like.  I also remember the days when I loathed it because I couldn’t understand why my husband would abandon me and the children placing us in hardship.  It was supposed to be his job to make sure the children remembered.

Now, as I have gotten older, I understand why mom used to say to give her a day of peace.  Dad used to take me out to a late lunch or early dinner and leave mom at home.  I totally get that.  I know that in the past couple of years, nothing pleases me more than an afternoon of popcorn and good movie alone.

My children still do the dinner out or flowers.  But, I tell them not to do it on that Sunday.  Church takes the time to honor every woman aged 18 and older with a flower and a small gift.  Sometimes at work, I am showered with gifts.

I honestly do not want special gifts.  I want time.  I want someone to come along side of me to help clean the house.  Take time to watch a movie with me and talk.  Join me for happy hour and listen to me prattle.  Join me shopping for an hour at Macy’s clearance rack.

My husband asked what he could do for me for that Sunday.  I told him to hire someone to come in, clean out the kitchen, wipe down the cabinets, spray for roaches and then place everything back the way I had it.  He just looked at me with a blank stare.  This is something that I no longer have the strength to do on my own due to my condition.

Having this condition has made me enjoy things more and avoid others.  Mother’s Day is one that I avoid.  I do not want to be reminded of my mom’s passing, my parental failings or that I am now transitioning to be an empty nester.  I want to be appreciated any day, not just one day.

I am curious to see what my children will do and who will remember at work.  As for that Sunday.  I will be working.  I will be doing what makes me feel valued….volunteering at a food pantry.  May I bless someone else’s Mother’s Day with great service.

For those of you who enjoy this time, I wish you continued enjoyment.  If you are like me, may God bless you with inner peace on that day.  That is what I pray for myself.

God to the rescue

The first day back after spring break started with what could have been a hefty expense.

I took the dog out for short walk to the garbage in our complex and back.  During that time, my husband decided to go down to the car and retrieve some paper goods I had purchased yesterday.  He took the car keys.  As I was returning to the apartment, I see my husband trying all the keys on the ring to get the door open.  I looked at him and told him that those were not the house keys.  He looked at me and uttered an expletive.

I knocked on the neighbor’s door ( I knew he would be up, he has a cigarette every morning when I walk the dog).  He allowed us to use his phone to call a locksmith.  You may ask why didn’t I call my son?  Well, you see, my phone was in the apartment with the house keys, locked.  Also, with the advancement of technology, I have become lazy in memorizing phone numbers.  The only one I can remember is work and church.

Daisy enjoyed the extra time outside.  She got to greet all the neighbors as they left for work this morning.

While waiting for the locksmith service to call me back and let me know who was coming, my son showed up.  He looked at us quizzically.  Unlocked the door, grabbed something he needed for work and left.  I called the service back and cancelled the order for the locksmith.

I kept telling myself while we were waiting with the neighbor that I wish God would find a way to bring Nate back for some reason so that we didn’t have to spend the $200+ for the locksmith.  He answered.  I am so grateful and appreciative.

It did make me realize two things.

  1. Put a spare house key on the car keys.
  2.  My husband’s illness is progressing to where he is unable to think actions all the way through.  He would have never let that happen 5 years ago, or even a year ago.  He would have taken his own keys.  He used to remember that I keep my keys separate in case I lose them.  He thought the process through to go to the car, he just didn’t think about me not having keys or making sure he could get back in.  His focus was on what was in the car.

So, where do we go from here.  I guess I will make sure a close friend has a spare key to the apartment, memorize her phone number and try to not carry so much stuff to the dumpster that I can’t carry my cell phone.

Today was just a reminder that God has my best interests at all times.

 

Exhaustion

As you recall, I have lowered my steroids to 2.5mg for the last three weeks.  I did the labs over a week ago  to see if my adrenal glands are ramping back up.  I did review my lab results myself.  From my perspective, I need to bring the steroids back up.  But, I am not the doctor.  Now I just have to wait for his call.

I am experiencing never ending tiredness or fatigue or exhaustion.  Pick whichever name you want.  I have also been having more rashes again.  So, I did some more research. This is what I found….

  • I could be having a flare up of the Lupus symptoms.
  • It could be my body continuing to go through withdrawals from lowering the medication.
  • The Sjogren’s could be flaring up.
  • Rheumatoid arthritis could be flaring up.  I have been more stiffer this week.
  • I might need oxygen more often in the day.
  • Seasonal allergies could be wearing down my immune system causing the symptom.  The fruit trees bloomed early due to a mild winter.
  • I could be depressed.
  • I could anemic again.

Even with my portable oxygen system (POC), I am still extra tired than I was before when working full-time and doing homework until 11 pm each night.  Right now I am lucky if I can hold my head up past 8:30 pm.  As for yoga in the morning and after work, nope-not happening this last week.  In fact, for the first time in over 4 years, I have used the snooze button.  That is so, so, so unlike me.

Then comes the reality check.  I remind myself that I am critically ill and that this just may be the progression.

I look around at my living quarters.  I see the dust bunnies in the corners, the curtains that need to be changed, furniture removed and boxes from years ago that need to be gone through and disposed of.  All of these make me tired just thinking about them.  I guess the most sad part is that I know I have to do these things alone.  My husband is unable to help and asking strangers (to him) in to help me is just a no go.

I am doing some minor things this next week during spring break (thank goodness I work for the school system) and the bigger stuff will have to wait for the summer break.  Hopefully I can tackle a box a day or at least a week during that time.  I have a respiratory test again this week.  I will let you know later how it goes.

In the mean time, I will continue to tackle each day with grace and thanksgiving.  I was supposed to die already.  It didn’t happen.

I know God will give me the strength or helping hands when it comes time to tackle these daily chores that seem so daunting to me.  He has allowed me to work and provide for my family still.  I am grateful.  I remember that God took a little boy’s lunch his mom packed for him and fed thousands.  Who am I in the grand scheme of things?  Maybe somehow in my perseverance, I am encouraging others.

I shall continue on.  As for my exhaustion, it could just be God telling to me lie down in green pastures for a while.  He knows I have walked through the valley of death many times these last couple of years.

Restasis Update and Steriod Withdrawals

Okay, I know you are going to ask my why I didn’t wait until nothing is going on in my life.  Life does not work that way.  My life is always under change and there is never a perfect time to adjust something.

That being said……

I did use the steroid eye drops the first day I tried the Restasis.  All I can say is WOW.  I have barely used additional tear drops  at all.  The second day I used it without the steroids.  It did not burn.  In fact, it was almost smoothing.  I will be honest though, there is a like a dull ache now, but not consistent.  It has been a week and I have only used fake tears a couple of times.  Mostly due to allergies.

But, after speaking with endocrinologist last week, I have decided to go down another step in my prednisone.  I am at 2.5 now.  This is the last step before going completely off.  Next Tuesday, my husband has labs at the VA and Quest is just across the street.  So, I told him I would fast with him and go get my labs for the endo.

Usually, when I have stepped down a level in the prednisone, it has been pretty consistent.  1 st week – I am fine.  2nd and 3rd – lots of extra coughing attacks.  4-6th, body slowly calms down.  I have been at 5 mg  for over 10 weeks now.  I should have been off.  My body did not calm down until last week.  Maybe it was the time change, I don’t know.  Last week was a good coughing week.

Here it is day 2 with the step down and I have chills, exhaustion, diarrhea, nausea and the ucks along with coughing attacks.  I did not expect the withdrawals symptoms to be so dramatic or so early this time around in the process.  The endo. was concerned over my adrenal glands not responding.   This is a real concern with the early signs of drama on my body.  I hope I can hold out until Tuesday.  He said that once he gets the results, he will advise me as to whether I need to go back up or continue to get off.  Optimally, getting off would be good.   But 5 mg a day will not hurt me as long as I monitor my health aggressively.  He did advise me to up the B-12 dose during the first two weeks to help with the stress.

At the 25th anniversary of church this weekend, people who haven’t seen me in a while commented on how healthy and good I looked.  I told them that is the problem with what I have.  Looks are deceiving.  I did take my portable oxygenator with me and I did use it during service.  There was just too many colognes flying in the air.

Overall, I am feeling pretty good.  I have lots of labs to get done in the next four weeks before I return to the pulmonologist.  Let’s see if it will happen.  I think I will go for the echo cardiogram on Friday.

Either way, whether my health is good, poor or down right ugly.  God has allowed me to continue to work and wake up everyday.  So, everyday has been a good, no matter what happened during it.

Let’s Get Ocular

Okay,  I have done another round of doctor visits.  The ophthalmologist last week and the endocrinologist today.

Going to the ophthalmologist is necessary if you have MCTD.  Any one of the autoimmune disorders can affect your vision.  So, I allowed my eyes to be flashed at (peripheral test), photo graphed (nerve check), poked (eye pressure) and dilated to the point I thought I was going to vomit (first time I have ever gotten nauseous from dilation – Dr. let me know that this is normal).  After all that was done with a healthy “Your eyes are doing great”, we discussed the dry eye issue.

I have had to use eye drops more than normal lately.  We have discussed for the last four years to start Restasis or do the little eye lozenge things.  After going around about comfort and long-term prognosis for my overall health.  It was agreed it was time.  The money spent on eye lubricants would equal approximately the co-pay for the new drug.  I am to administer it twice a day.  Personally, I might only try it once  a day to see how my eyes react.

The script also came with a suggestion of using an eye steroid drop to help with the pain for the first couple of weeks.  PAIN!  Yes, pain.  Supposedly the restasis eye drops can sting a lot.  It was suggested I put in the steroid drops 10 minutes before the restasis.  I figured out that I could put in the steroid drops after my allergy eye drops, do yoga (10 minute morning stretch session) and then do the other eye drops after when I put my makeup on.

It has occurred to me that putting my makeup on after these drops may be a challenge if it stings so much I can’t see the mirror.  I guess I will find out in the morning.

So, here I am adding another immune therapy to my regimen that must be done in 12 hour intervals.  I already have daily timers for my other meds.  I guess I can double this one up also.

So, is this a sign of deterioration?  I really don’t know.  Considering my eyes are doing wonderful and they aren’t any where near the severity of others, I think it is just a flare up of my condition.  Then again, I am getting older.  mucus secretions naturally start to wane.  Also, I may have really needed this five years ago when I went to him with my first symptoms.  We both brushed it off as allergy eyes.  Guess, looking back now, it was just another symptom of a much deeper health issue.  Either way, the eye drops for allergies, the restasis and steroids are here to stay.  Some days are better than others.

Like today.  I had a good eye day today.  I only put fake tears in once at work.  Then again it rained last night.  Clean air has that effect on eyes.

Either way, I am at peace with this decision to add the eye drops.  This is just part of God’s story for me.

P.S.  The endocrinologist was pleased with my weight loss.  We discussed my B-12 treatment and maybe a future tweak for it.  Other than that, my labs look great and he was pleased with mental attitude and communication regarding my treatment plans.  He requested some special labs regarding me getting off of the prednisone and some kind of gene detection that will help determine further B-12 adjustments.

Daily itchy legs

MCTD has its own unique set of issues.  I mean, do I have lupus, Sjogren’s, RA, asthma or something else? The answer is yes.  Sjogren’s takes up 3 years to diagnose.  Looking back, my symptoms began as a child and culiminated six years ago.  But, each time, bandaids were put in place via medication.  It has not been until these last few years did doctors look at the family, medical history and symptoms as a whole.

That is besides the point…I wanted to address a symptom that can be attributed to any one of the conditions I listed above.  After some research, I am not any closer to an answer, but I am confident that I will survive.

For about 4 years now, every evening I have itchy legs.  Sometimes it is so bad, I scratch them open.  I first thought this was due to not shaving my legs every day.  I figured oh, well.  Deal with it.  Then when I was diagnosed with unspecified celiac condition, I thought, great – No wheat, no itching.  It did help and wheat is a major trigger.  But, eventually the itching returned.  I figured it was the excessive chlorine in the Hialeah water when I take a bath.  I tried warm baths, hot baths and even tepid baths and showers to alleviate the itchy legs with a charcoal filter.  No use.  I have even gone completely organic for my body soaps and shampoos with non processed ingredients.  Still itchy.  The heavy steriods I was on last year at this time did lower the itching for quite a while.  Now that I am down to 5 mg and trying to get back off, itching has returned.  My sister even sent me a grounding kit to help with my symptoms.  I will be honest, it has helped with my arthritus symptoms and I have not been as sick with the grounding daily.  It has not helped with the itching.

I got fed up last week and decided to do some serious research on this.  Some of my itching is allergy related and is greatly increased when I eat or interact with an irritant.  But, the daily itching at a specific time of day is more related with auto immune disorders.  I wish I had known this 4 years ago.  It even goes along with diabetes (which I do not have, yet).  The remedies vary, but mostly include steriods (which I am trying to get off of).  Sjogren’s has the dry skin, so heavy creams help a little.  I choose ones that are all natural (unprocessed oils) and chamomile or lavendar scented.  Lupus has rashes in general and RA has psoriasis (another rash affliction).  So, pick your problem, and it has a rash or itch to go with it.

What has started new is that when I do itch, where ever I itch, it gets bumpy like hives,  Also, the itch is random and travels from part of my body to another instantly.  I have been told that that is my body doing a nerve self check.    I don’t believe that.  One school of thought with regards to the auto immune disorder is that maybe I am always itchy, but in the evening when I relax, I notice it more and therefore distracted by it more.

I have also noted that work stress has started to make the rashes and itchies worse.  Today my neck broke out in red and I felt like it had a 100 mosquito bites on it after being stressed by an event at work.  I refused to scratch and it calmed down after I relaxed.  I find that drinking plenty of liquids (I prefer tea with its natural respiratory affects) seems to help a little during the day.

I guess what I am stating is that if you are experiencing itching with MCTD, make a note of it, tell your doctor and take care of yourself.

Doing the anti-inflammatory diet has helped me immensely.  It hasn’t helped the itching yet, but that may lessen as I continue to get rid of weight.  I do notice that my hips don’t ache, my neck does not ache and I am not as puffy as I was a month ago.  All I can say, is try it.  You might just feel better.  Do I miss these foods, heck ya!  Some foods just taste better with tomatoe sauce, cream  or peppers in them.   But, I have found a new love in plain old fresh ground black pepper.

I am grateful to God for giving the courage of a friend to refer this diet to me.  May you find your well spring of endurance with God and encouragement with friends.

February Check – in

I promised to check back with you regarding the Whole30 eating plan after a month.  Well…..I have removed 7 pounds and my clothes are starting to get looser.  I still have a long way to go.  But, I have decided to continue the Nightshade avoidance eating plan for another 30 days.  I am adding back honey and white potatoes this week.

The biggest thing I have noticed was the realization of how much sugar I was pumping into my body.  My arthritic symptoms caused by my condition have lowered immensely with avoiding nightshade vegetables.  If you are interested here is the link http://whole30.com .  There is a tab that has their shopping list downloads and shorter version of the program.  You do not need to buy anything from them.  You just need to buy what is on the shopping list.  I have even discovered Pan de Yuca (aka Pan de Bono) as a nice substitute when I need to chew some bread.

I am still doing the 10 minute yoga morning stretch each day.  I try to more yoga in the afternoons,  giving yoga a rest on the weekends.  I have increased my walking.  This is due to the fact that a charity purchased for me the portable oxygen concentrator (poc) I needed to get out of these four walls.   I have used it twice for walks with the dog and used it all day Sunday at the food bank I volunteer at.  It was so nice not to have coughing attacks while bagging the food.  It was even nicer to feel somewhat energetic by the end of the day instead of extremely fatigued.   I plan on taking the poc to church again this week along to a wedding the week after.  I am curious to see peoples reactions to me with it.  At the food bank, their only concern was that it was helping me.  It was.  But they have watched my health deteriorate considerably over the last three years.  The wedding will my first evening adventure in over a year.

The only bad thing is that since it has not really rained in almost two weeks, my coughing has increased again.  It is not as phlegmy as before, but it still tires me out.

I have several specialist visits in the next 30 days.  I will check back with you the beginning of March.

I am thankful for each day God grants me.

Rheumatology 101

I followed up with the rheumatologist today after the visit with the pulmonologist two weeks ago.  The good news is that the Whole30 eating plan is helping.  Even the doctor noted I am much more animated and in 19 days of eating this way, I have removed 5 pounds.  I have been very strict with myself.  (Although I dream about eating donuts, pizza and jelly bellies.)  I have thrush in my mouth again.  But that goes along with the prednisone.  Until I get off of it, I will continue to have a flora imbalance.

He was pleased to see me weaning off the prednisone and hopes that by the time I see him in May, I will be completely off of it.  Me too.

I did share with him about the information I had found out regarding eating non-inflammatory foods.  I gave him a copy of the Whole30 rules and the shopping list that excludes nightshades which cause inflammation.  He said that there has not been enough studies regarding arthritus and intake of food.  He was pleased with my research and told me to continue with this eating plan.

We discussed a few of the medications and came to the conclusion that to leave everything the same for now since it seems to be working.

So….I will let you know how much weight has been removed when I weigh in officially on February 6th.

In the mean time, I am excited to share that a charity group has gotten together with a portable oxygen vendor to get me the machine that I need for more freedom.  It will be nice to be able to go to the mall, grocery shopping or walk more than 5 blocks alone without assistance from another person.  I will also be able to go to Chicago for my graduation in June or go see my siblings.

I am so grateful to God for this blessing and all the little blessings He has bestowed on me.