New Year – Same goals

I just had my beginning 2018 meeting with my pulmonologist.  It went well.  I had been freaking out about my results of my pulmonary function test (PFT) because I couldn’t figure out how to read the results.   They “looked” better, but the last time I thought that, I was worse.  So I went through a week of anxiety.  I did try to control it, but it is hard to control emotions during the holidays.

Getting back on topic.

The doctor was pleased with all my results.  I have regained an additional 10% on my lung capacity and about 15% on my carbon dioxide diffusion.   He asked me what supplementary things I was doing that have helped.  I told him that I was doing…

  1. Yoga every morning, about 20 minutes, Monday through Friday.
  2. Reflexology massages every 8 weeks.
  3. Pedicure every month.
  4. Black cohosh and turmeric supplements an hour before going to bed.
  5. Reiki each night before bed.
  6. Eating Paleo style for its avoidance of inflammatory foods.

He looked at me and said keep it up.  One thing I did not remind him of was my grounding sheet.  I am sure it is boosting the efficacy of my medication.

Bottom line is that everything is to remain the same for medication right now.  Maintain other exercises and processes, but keep the yoga no matter what happens.  He says it is good for increasing lung volume and relaxation.  I knew that, but I just nodded.  He then ordered my labs for every two months, and echocardiogram (once a year) and another PFT with a walking test in four months before I return.

What a relief!!  I was so tired after that.  I had really worked myself up to hear horrendous news.

He did ask one more time about the sleep test.  I politely explained to him why I keep refusing it.  This time he understood.  (pay deductible balance up front and 20% of procedure upfront = $2000) I told him that if I ever get $2000 to waste, I will make sure to have that test done.

That week of anxiety over my test results have given me a flare up.  So,  here is the golden nugget I learned so far.  Don’t look at the preliminary results.  It is not worth the nausea and flare up.  So, in April, the results will go in an envelope and stay there until I can meet with the Dr. and have him explain.

I do understand that not all my follow-ups will be positive.  I have various serious conditions that all lead to an early grave.  It is my job to stay real and focus on Self Care this year.  I didn’t start until August of last year with that motto.  Let’s see how 2018 ends with it going all year.

Here is a smile from the week before Christmas.

 

Procedure Happy Doctors

I have been having issues of the female nature.  I am over 50 now and it is expected.  But, every time I go to my gyno, he wants to do another procedure or lab test.  I already feel like a guinea pig with all my other doctors.

Well, today he was not available, the midwife was.  The midwife and I discussed my latest “procedure” results and the doctor’s recommendations.  I was not surprised in any way about the recommendation for a “scopy with possible biopsy”.  I said, okay, let’s talk about that…..

I explained in a nice way that I am at some Dr. office every week.  I have labs pulled every month for my various conditions ( I made sure to emphasize the last point) and that I will be having this next round of procedures at my convenience during the next section of time off in the spring.  The midwife and I agreed that since the issue at hand had not changed in a year and me being overly sensitive to procedures, that I could wait.  So, I felt good there.

Now, to check out and scheduling the procedure.  I was highly pressured to have it done in the next three weeks.  I repeatedly told them no.  I wanted to make sure to have a week where no other commitments would interfere should I need additional recovery time due to the procedure that would require a sedative, local anesthesia and someone else to drive home.  I then explained that I did not want to miss any extra work time in case I needed some extra days.  They still wanted to schedule me during winter break.  I explained I already had three doctor appointments during that time.  Then they tried explain I would only have a little cramping after the procedure.  I explained as calmly as I could that I was to only experience a little pressure during the last procedure which ended up feeling like I was stabbed in the uterus with knives and bled for two days.  I did tell the nice lady that should I have any problems or felt I could handle the procedure any earlier, I would reschedule it.

She acknowledged that I wasn’t going to give on that point.  She gave my pre-procedure scripts and directions.  She even gave me an envelope to place the information in.

I want you to know that I have decided that I am no longer going to be bullied because the doctor wants to procedures done before the end of the calendar year.  I am not on Medicare or Medicaid.  My deductible has only been met once in the last 12 years, and I am still paying off my portion of it over a year later.

I am also learning that with MCTD things didn’t normally cause discomfort or pain, now do.  So a little cramping means I will need a heating pad and some heavy-duty drugs.  A little pressure means I will want to scream.  You will feel a pinch means that it will equal being stabbed.  Blood pressure cuffs cause me to make a face.

Please understand that I prayed before I went in that I would remain calm and grateful for the staff in the office.  I know it helped.  The one lady who does check out asked the front desk to help me since I don’t speak enough spanish for her.  I was totally happy with that.  It made check out easier.  I am so glad that God kept me in check.   It would have been so easy to get nasty and bitter.

What to take away from this?  Unless the doctor expresses that the problem is urgent, do your procedures at your convenience.  Also, take the time to mentally prepare yourself for the “news” and dealing with pressured staff.

I am moving forward, but at my pace and convenience.  Like I explained to the young lady that helped me.  My time is precious.  I did not explain to her why.  It is of no concern of hers that I feel the pressure every day that it may be my last.

May you walk tall, confident and with gratitude with God in your journey dealing with doctors and your condition(s).

Made it through another Holiday

I have been wanting to share with you how my Thanksgiving went.  It went well.  I even had help decorating my office for Thanksgiving and again for Christmas.  Of course, I had to have help.

Thanksgiving went great.  I paired up with friends who eat the similar diet that I do.  We discussed the menu ahead of time and agreed on keeping out or keeping in certain items.  For the most part, it ended up being a Paleo Thanksgiving.  It couldn’t have been better.

I didn’t feel tempted to eat things I couldn’t and I had no adverse reactions to anything.

So, here are a few tips that I followed to make my Thanksgiving and my upcoming Christmas a success….

  1.  Schedule only one thing a day to do in addition to your regular work schedule.  i.e.  Making a pie.  Or going to work and then a doctor’s visit.
  2.  Let your family and friends know ahead of time of your dietary restrictions.
  3.  Bring a dish to the event that you know you can eat.
  4.  If you are unsure about an event,  eat before hand or just don’t go.  “No” is an answer and an option.  If those concerned for you don’t understand.  Move on.
  5.   Watch all the holiday scents.  People get candle and scent crazy this time of the year.  If a scent bothers you, you might have to leave.  I know I avoid certain places during this time (actually all time) like Bed Bath and Beyond and Bath & Body Works, Christmas Palace and malls in general.
  6.   Don’t be ashamed to ask people that are close to you to go cologne free around you.  Living in a hispanic community, cheek kisses are exchanged at greetings and good-byes.  This exchange with a heavy cologne can make me sick for hours.  If they have cologne, offer your hand or express that you really can’t handle their cologne/perfume.  If you can smell it 3′ away from them, don’t hug or kiss them.
  7.  Make the most of each holiday.  I have decided to enjoy each holiday with new eyes.  Be a child.  Allow the wonder to flow over you.  But, stay in budget.
  8.  If eating out, look up restaurant menus online.  Most places offer GF menu options or allergy menus if you know how to find it.  If not, don’t go to that restaurant.  I have found a few that I like and I have let the corporate office know I appreciate it for that location.  These few establishments now know me because they got rewarded from Corporate for serving my special needs.
  9.  Do what you can.   This year I put up the Christmas tree and a few decorations.  I didn’t have help (like I did at my office), so only half went up.  I was pleased.  Here is picture. 
  10.  Here is a video of my office.  It took two other people to help me.  It isn’t much, but I feel more festive with these few decorations.
  11.   If you don’t feel in the mood to do decorations, it is okay.  I didn’t last year.  I meant to, I just didn’t have the energy or even the desire.
  12.   Allow every day to be a gift.  I know we all have work, meals to prepare and family’s to tend to.  Please take a few minutes for yourself and to just enjoy.  This is your choice.  You can allow yourself to be “down” or choose to make each day enjoyable.

Okay, I am done preaching and I feel like I am repeating myself.

Embrace each morning with a short devotional and meditate on the word “gratitude” for 3-5 minutes.  It changes your perception.  Each day is a blessing to me.  I was supposed to be on disability and permant oxygen at this point in my illness.  I still work, volunteer and visit friends independently.  So I can’t put up decorations by myself anymore.  More excuses to have people involved in my life for me to be grateful for them.

Remember that Christ is reason for this season.

Just Say It Plain

I have been pussy footing around about my health lately.  I had a checkup in August that caught me by surprise.  My health has taken a turn for the worse.

Yes, it has.  I can feel it now each day.  Each day gets just a little harder.  The neuropathy that was just a prick here and there in the evenings now feels like a swarm of mosquitos.  I now take my portable oxygen to work.  I find myself needing it at least once a week or more.  I race home in the evenings to get to the continuous unit.  Every outing seems more difficult.

I went to the movies the other day with my husband.  By the end of the movie, I could hardly move due to shooting pains in my legs from the arthritus.

Lately, I am relieved to see Fridays.  I find getting up on Thursday and Friday mornings to go to work to be difficult and unmotivating.

These are just a few of the things I am encountering.

I did submit a resume to another job prospect before my doctor’s appointment in August.  I am now being asked to follow through with an interview.  I had to tell a close friend why I have not followed through for the interview.  I had to tell them that I was not comfortable working so far away from home.  I also had to explain that my condition had gotten worse.  Nothing has hurt me more than explaining to a close friend that I am even closer to dying than previously.  I told this friend very frankly.  I was going to sugar coat it.  Let’s be honest, sugar coating this issue is not going to help anyone.  So, I kept the discussion to the facts and how I felt.  My friend accepted the news better than I thought.  Of course my imagination takes everything to the worst level.

Now, let’s talk about what I am doing to help manage this decline.

  1.  I do yoga every morning Monday through Friday whether “I feel like it” or not.  At least 20 minutes.  I do try to fit in another 10 minutes in the evening.
  2. I allow myself an alcoholic drink in the evenings when I want one.  Usually about twice a week and only one serving.
  3. I take the dog to work once a week with me.
  4. I make sure to walk the dog every morning.
  5. Take my medications as prescribed.
  6. Avoid the news.  It just makes me more depressed
  7. Allow my friends to help me.
  8. Keep my volunteering commitments.  I have continued to volunteer at a food bank every Sunday.  It helps distract me from my problems.  I do wear the portable oxygen while doing this.
  9. Get help from Customer Service when grocery shopping.  I wear the portable oxygen when shopping.
  10. Take time with my friends as precious and a priority.
  11. Take time off if needed to recoup and recharge to handle the rest of the week.

I have been diagnosed with further complications with regards to female problems.  I am going through the process of diagnosis and surgery may be possible in the near future.  I find this a little scary because sometimes I heal fast and other times I heal slow.  Since my bruises are taking a long time to go away, I am assuming I am in the phase of slow healing.

My only conclusion at this point is that I am in a flare up of my condition.  I am hoping that it will subside and or go into remission.  I have further testing in December.  At that point, it will be decided if I need to transition to retuxin drips for my condition.

I told my doctor in August that God knows my date and time, a transplant won’t make any difference.  Also, after doing a variety of researching, my chance of survival is around 20%.   I am sorry, that is just not high enough for me to risk it even if I cleared the process.

I am grateful that my friends have accepted my condition.  My daughter still gets tears when I cough excessively.

God has provided for me greatly these last few months.  Things have been a little easier financially.  I am grateful.

I do not know what is ahead nor how much time is left.  I place my hope in God that He will walk me to the end gently.  He gives me good days and good moments.  I enjoy each second.

May your journey with these conditions be as blessed as mine.

Hurricane Irma – Prep, During and After

I am happy to report that our family made it through the hurricane with little to no damage.  Having MCTD and a dog sort of forced us to stay in our apartment.  So, to give you guidance, I am going to share my preparations, what I did during and what I am doing now while waiting to return to work.

Preparation-

  • Gathered all medication in one area.  I put all extra stock of medication in a rolling suitcase in case we had to leave.
  • Placed all important documents in the same area as medication next to an empty sterlite container.
  • Filled all containers I could with filtered and tap water.
  • I even made some sun tea should we lose electricity.
  • Charged up all batteries for all electronics and medical equipment.
  • Made sure everyone was clean before high winds hit.
  • Had a contingency plan on how to use portable oxygen concentrator in the event of loss of power.  I figured I could use it as a minimum of two hours a night for a week (about 13 hours of battery) until we got power or I could charge it at someone’s residence.
  • Made food for my specific diet that could be eaten cold.

During-

  • Made sure to keep regular sleeping hours.  This storm was over two days long.
  • Keep exercising.  I did yoga every morning at my normal times.  I had memorized the moves due to consistent practice.  Played chase with the dog.
  • Had coloring books, crafts, books and knitting ready in case of loss of power.  I actually did a cross stitch piece when bored and lost internet.
  • Kept electricity use to a minimum.
  • I did use my oxygen during the night as prescribed.  I am grateful that we did not lose power.

After-

  • Unpacked all medications and put paperwork back.
  • Checked the apartment for damage, threw out garbage from two days being inside.
  • Continued yoga, Reiki and Bible reading.
  • Go outside and enjoy the sun.
  • Made food for meals and lunches for work.
  • Try to avoid driving around since limited gas for a while.

I have to admit that Daisy has enjoyed me being home these days.  Personally, I was ready to return to work a day after the storm was done.  But, I am one of the few with power and no children to worry about.

In the mean time, I am playing games and doing jigsaw puzzles on the computer  (we didn’t lose internet either.)

I hope this helps.  Again I am so grateful that the storm avoided us.  I was prepared in the event it did hit us.

The biggest tip I have to give you regarding seasonal natural disasters like hurricanes, typhoons, blizzards, etc. is to have the necessary supplies at the beginning of the season.  It was nice to know that we already had a case of bottled water and canned food to last a week or more.  I bought those at the beginning of the season with my first paycheck in June.

I know God was the one who protected us.  Due to that end, those that live in the building with me were also blessed.  The surrounding buildings had all lost power.

I will confess that I did break down and cry before the storm hit because of stress.  Before the storm, I did notice that my coughing did get worse two days before the storm, then returned to normal once it hit.

I never stopped believing that God would provide for me no matter what the circumstance.

How will family react?

What a question!  How will your family react as each doctor visit brings about further bad news and death knocking at your door?

Honestly, I don’t know.  I can only share with you my immediate family reactions.

My brothers who live all over the US –  one commiserates, the other two I don’t really know.  I want to think that they care, but they have their own problems.

My sisters – One completely understands and may even be suffering from some of what I have.  The other expresses concern and sympathy.

My children – Here are two total opposites.  My daughter leaks out a few tears and is trying to understand what is happening.  My son, well, he has his own thing going on.  I believe that he understands that I am ill and tries to help where he can.  Other than that, I am not sure how he really feels because he does not tell me.

My husband –  It depends on the day.  Some days he can be very protective of me.  Others he reacts that nothing has happened and I am not ill.  Then there are those days when he comes along side of me and supports me.  It really depends upon his mental status.

I would like to think that everyone understands and supports me.  The reality is that I am not in their shoes and I do not have telepathy to know their thoughts.  I understand that most people don’t really know how to react when I dish out more bad news.  I am okay with that.

The one thing I am sure of is that God knows what is happening, how I am feeling, and will make sure that my physical and emotional support is met at all times.

All I want for Christmas….

No, I do not want my two front teeth for Christmas.  I have spent this summer regifting and donating various presents from holidays past.  So…being obsessed lately with having little time, I thought I would expand upon a conversation I had with a close friend who died on the operating table this last spring, yet he survived.  He said he didn’t want flowers or gifts in the hospital.  Just seeing someone who cared to stop by meant the world.

As I am thrown about in this sea of information, instant self diagnosis, and doctor blah blah, I find myself craving something more precious than anything else in the world.  TIME.  I was once told that is how children and even pets spell love.

It isn’t that I feel cheated of having time.  But, after getting rid of all the candles, body creams and perfumes, I realize that I want something that most people don’t have much of.  Due to my respiratory illnesses, the candles, creams and perfumes were nice, but not really for someone with my condition.  What do I really want?

Let me give you some examples of what I have enjoyed the most over the last two years in my fight to survive.  Mostly it has been taking the time to listen, care and help me.

Go with me to the doctor or labs.   I even have a transit pass filled just for a partner.  These appointments are not usually happy.

Help me go shopping.  I don’t need you buy anything for me.  I do need someone to reach the top shelves and bring the groceries up the stairs.  Or even load the washer and dryer for me in the laundry room.

Take me to the mall and help me try on clothes.

Enjoy a cup of tea or coffee with me.  I usually always have hot water available.

Join me for a guided meditation.

Meet me for a church service.

Meet with me for a pedicure, manicure or even reflexology.

Join me for happy hour at my favorite pub.

Understand that I can’t do evening events.  But, on a rare occasion I am given free concert tickets, go with me.

If you feel you must take me out to eat, understand that I have food restrictions.  A lot of restrictions.  Let me review the menu before heading to a place.

Gifts of soaps and lotions.  Ask me my favorites and what scents don’t bother me.

A bottle of wine is always appreciated.

Just remember when thinking of holidays, birthdays or any other reason to get someone who has MCTD a gift.  Think about the time factor.  Your time with me (or other sufferer) is more precious than any other gift you could give.  Most of all, understand that death is lurking around in our minds.  You spending time with me takes me away from that reality.

My best time this summer was travelling to Chicago with two good friends for my college graduation.  I paid my own way and for our room.  I felt totally loved and cared for knowing that my friends put their lives on hold for a weekend to be with me so I would not be alone.  Another great time was spending a weekend with my sister learning Reiki.

My path to the end may be short.  But your time with me makes it seem more enjoyable.

Arterial Blood Gas – Just say NO

I have recently done my 4 month respiratory tests as scheduled.  They included oximetry and a spirometry.  Because I was sent to a different lab than before, they threw in a blood gas draw in the event my carbondioxide qualified me for it.  I figured it would be a normal blood draw.  I was very mistaken.

I did have the technician confirm with the lab that my health insurance would cover it.  It does since it was part of the respiratory testing sequence I was scheduled for.

The next part is graphic.  If you are squimish, stop reading now.  Understand that 5 days later, my wrist still hurts.

The procedure includes numbing your wrist with a lidocaine injection.  That stings.  Then they go digging with another syringe to find your artery.  My technician had a problem and wanted to move to my other wrist.  At this point, I was already dizzy and thought I would pass out.  I told them that if they could not get it from the already numb wrist, they were out of luck.  The facility was able to get one of their artery specialists to get the draw. (I have to admit that arterial blood looks very pretty.  Almost Christmas red colored.)

My results are in and I do not know how to read them.  One of the results came back low and my iron is low.  The iron being low is normal considering my myriad of problems.  Only one point is great as far as I am concerned.

I return to my rheumatologist next week and his partner the pulmonologist the following.  I will update you as to my progress then.

My suggestion, talk to your doctor about this test.  I was unaware it was procedural as part of the respiratory testing.  The technician suggested that I ask for it to be waived for future testing if the doctor says it is okay.  This was my first one, and as far as I am concerned, my last.  Also, make sure that the rest of the week following this draw you have nothing major to do with your arm.  I have had a busy week.   That probably did not help with the recuperation of my wrist.

The good news is that I did not pass out.

Remember you are in control.  If you are unsure of a procedure, get clarification before you go.  If something is sprung on you, say NO until you can speak to your doctor.  Learn from my mistake.

 

Fatigue Follow-up

I am happy to report that my energy levels have finally returned to what I consider normal.

At the time of the last post regarding this subject matter, I did two Reiki treatments and a reflexology massage during that week.

It helped immensely.  The biggest energy balancer was the reflexology massage. I came out of the massage feeling nauseous as usual, but with energy.  After the nausau wore off, the energy stayed.

I also made sure to avoid all my food allergens and any food that causes inflammation or phlegm.   I have continued that food restriction into this week and feel great (well, as good as I am going to get).

Those food restrictions included all tomato, peppers (green, red, orange, jalepeno, etc.), dairy, legumes (beans) and grain products.  I increased the amount of green vegetables and protein to compensate.

I now know that I have to schedule reflexology massages every 12 weeks to help keep my energy up.  I also have to be very selective about my food choices.  I knowing that I have to return to organized chaos in the next 5 weeks, I will probably set up an extra reflexology appointment just after work starts up again.

Remember, if you know you are going to be stressed out for a particular activity or time frame… Prepare yourself and listen to your body.

Travel and Stress Fatigue

Here it is two weeks afer my trip to Chicago and I am still exhausted.  No matter how much I sleep or nap.  I just don’t feel energetic.  It also doesn’t help that the last three weeks have been the end of school, my trip and closing of my office along with hearty dose of roaches and bed bugs.  Nothing like a good stew of stress to make you feel sicker than ever.  The first three stressors I knew about and I had a plan of attack to keep them from causing a flare up.  As for the bed bugs, well, they happen and are difficult to kill.

Well…I believe that this is a flare up of my conditions. Whether it is the Lupus, RA or Sjogren’s acting up, it is difficult to tell.  I am more inclined to say the Lupus since it is more stress sensitive.  Also, I have had a rash magically appear this week with no known cause other than RA or the Lupus.  My chest has felt heavier this week.

My suggestion for dealing with known traveling or stressful situations.

  • Do take your vitamins and medications every day.
  • Do take a nap if needed.
  • Do stick to regular exercise or even ramp it up a little (very little).  Endorphins help make you feel better.
  • Stay connected to your social groups.  Church, volunteering, etc.
  • Eat healthy.  (I have found myself drawn to fresh raw vegetables and beef.)
  • If you are on oxygen, allow yourself a day in bed on the oxygen playing games, watching movies, knitting, etc.  (I did that yesterday and I feel a little better today.)  I have been taking my portable oxygen everywhere.  It has been used frequently.
  • Stay connected to God.  I have found impromptu prayer to lift me in times of dire exhaustion when I know I can’t rest any time soon.  My morning devotional time helps keep me in a positive frame of mind.
  • Try alternative medicine.  I have found a reflexology massage to easy my symptoms for up to two weeks.   I am currently exploring Reiki.  I have had two treatments after stressful days.  Both times I slept better that night and my muscles in my back were looser.
  • Pamper yourself.  Get your nails done.  I love having a pedicure once a month.  There is something about having my feet soak while sitting in a massage chair that is uplifting.  I am learning to schedule these pamperings during my lunch hour during stressful weeks.  I come back with a nicer attitude and able to handle the rest of the day.
  • Understand that this is a flare up.  It will end after it has run its course and you have healed.

I am going to watch my symptoms very carefully.  I am not due to see the doctors until the first week of August.  If the exhaustion does not start to abate this next week, I will contact them.

I have various other doctor appointments and labs all summer long.  I will be keeping you updated.

Now, here is my disclaimer.  I am not in any way a medical professional.  I research, read and investigate on my own.  I am documenting my travels through this medical condition so others can see what may (and I say may) help them.  I do have my herbology certificate.  I do have a BS in Business Administration.  I will be attending a Reiki training this summer.

The  April and May editions  of the magazine by Sjogren’s Foundation have incredible articles.  They help you understand Sjogren’s and RA much better.  April’s had the results of a survey that they did.  It was very interesting about how much this affects your life, relationships and finances.  You may or may not have Sjogren’s, but it is worth the annual fee just for the magazine with latest in medical and alternative methods for treating.  Just so you know, almost every person with this condition has up to 5 other medical conditions associated with the diagnosis.  I am one.  Here is the link https://www.sjogrens.org/files/articles/SSFLivingwithSjogrens.pdf

Enjoy the article.  Here is the link to the foundation  https://www.sjogrens.org/

I will admit the biggest comfort is stopping and realizing that God knows what is going on.  The bigger picture is beyond my human vision capacity.    I figure God is telling me it is time to enjoy my summer break.