Category: Health

I haven’t had much to say lately.  My next round of respiratory tests and labs are in two weeks.  I did recently undergo a biopsy of endometrial material.  I won’t have those results for two  weeks also.  But,  I have noticed some of the following changes lately.  Please be advised that these may or may not apply to you and I will be bringing them up to the doctor.

• Mosquito hands – every now and then I will have what I call mosquito hands.  What does that mean?  Well, during the process of trying to wind down and fall asleep, it feels like a bunch of mosquitos attacking my hands.  Only my hands.  This is not to be confused with the random pin pricks I normally feel as I fall asleep.  It usually takes a dose of aspirin and a valium to get them to calm down so that I can sleep.
• Avoiding grains does make a difference –  I have  regressed now and then to conserve on time or convenience to eating foods that contain grains that are gluten – free.  This usually causes me to wake up the next morning with an achy body and/or a rash on my hands.  After two days of avoiding all grains, rash is healed and body aches are gone.  Avoiding grains does not seem to affect the amount of coughing.
• Body breakdowns – recently I have been experiencing what I want to call body breakdowns.  I don’t really know how to describe it except that it starts with me feeling a little chilled.  Then it feels like a lead blanket (like the one from the dentist) being laid on me.  I am usually in bed before this lead blanket feeling overcomes me.  I am unable to move for about two hours.  I don’t fall asleep.  I don’t have  a fever.  But I am unable to do more than lay there and assure my dog verbally that I am okay.  After about two hours, it feels like the blanket is lifted and I am fine.  There does not seem to be a trigger or anything to bring it on.  I actually took a day off from work, stayed home on oxygen and drank about a gallon or more of liquids to see if it helped.  It did.  The next event lasted only 45 minutes.  But as soon as I got chilled, I drank a big glass of water and ran upstairs to lay down.  I can only guess that maybe I am getting dehydrated during the day causing this event.  I can’t explain it any other way.  It will be interesting to see what the doctor says.
• Quality of vitamins do count –   I used to take a general multi-vitamin by Centrum and any generic of probiotics, calcium, biotin, iron and D3.  Well…..My labs steadily were getting worse regarding my hemoglobin.  So, I have been slowly switching to a “food -based” vitamin company.  I do admit that they are not cheap.  It has been three months since I have switched the iron, calcium and D3.  My labs in February were one point higher.  I have now added a more costly 16 strain probiotic to my regimen and a different multi for women over 50.  I have labs in two weeks to see if the hemoglobin returns back to normal.  If it does, then my investment in these particular brand of vitamins and other supplements will be worth it.
• Remember Turmeric – I have recently discovered that taking turmeric at night is a must for me.  I forgot one night.  The next morning my hands were puffy and stiff.  This herb is great for reducing inflammation in the body.
• Getting back social events – I have been blessed by friends and family to have scheduled once a month for me to attend some kind of community social event.  January, I saw chinese dancers.  February, my son took me to a piano concert and recently this month, my best friend took me to an opera.  Understand that the day before each of these events, I stayed at home on oxygen and rested.    It takes planning, but each event was thoroughly enjoyed.  So, if you can afford it (if you can’t- there are free concerts out there, you just have to find them), schedule yourself for something once a quarter or even once a month.  Plan ahead to get rest the day before and enjoy.

I hope these few insights help you with what you or your loved one is going through.  I am not in their shoes, so do not count this as advice.  Count this as my walk.  If anything I share helps you to feel better, wonderful.  If not, keep researching.  I am always looking for new information on treatments, complimentary medicine and psychological information to help me deal with my personal journey.

As God closes doors on what I can’t do anymore, He opens His arms even bigger to receive me and help me with what I can do.

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.

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.

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.