Embracing life with chronic pain and illnesses.

Archive for March, 2013

Insurance Frustrations

I am sure others have experienced the joy of what I am now dealing with! My doctor wants me to have the infusion/shot of Lupron…..insurance says they need to have a “diagnosis” for it…..the drug per insurance is only set to use for specific cirmcumstances……

Doctor is working on which alernative diagnosis can be used……Ihave also contacted my insurance provider contacts who are all over this one.

It is definitely a challenge when you are “outside” of the box….do not fit into the traditional diagnostic settings! We are hoping all will come together in time for my trip to Eugene on Wednesday……

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Results of Ultrasounds

Well…made it through all the ultrasounds…..boy…I was NOT feeling very good by the end of it all!  Had to just sit for about an hour before I could even think of getting in the car.

Thursday was the doctor appointment to go over the results.  With the bulk of the fluid off, doctor was able to see that I still have a tumor on my right ovary.  All indicators point to it being benign.  The location of the tumor could very well be causing some of the pain I am experiencing.  The rest could very well be the nerves overreacting.

Doctor will be discussing my case at the next case review meeting next Wednesday.  I will hear from doctor on Thursday to review and discuss the timing of the next step which will be surgery.

Now to try to rest….and wait to receive marching orders.  Next step will be to have another conversation with our son….to let him know that the doctors are still working on the best plan to get Mom well.

Our Children Worry!!!

There is absolutely no doubt…out kids worry about us!  When we have to go to the doctor  or have to have tests it registers on their radar.  However, it gets to them!  They get overwhelmed.

Our son is SOOOO tired of me seeing doctors.  He wants me to be me…Now!  It hurts!  I so want my body to cooperate with what we want.  Another doctor appointment tomorrow….hopefully some answers.  Hoping for reassurance that the nerve meds are the trick….just a matter of getting the right dose…and then getting back to our life.

I want to live up to the promise of camping at Dinosaur, CO with our son.  He loves dinos…loves history…wants to be a paleontologist….he knows more about dinosaurs and prehistoric animals than I thought possible!

It is SO hard as a parent to see a child…your own child…in such distress.  With the length of my issues, finally getting to him….not able to comprehend why Mom is still having problems.  Afterall….doctors had me fixed….now more problems.

Best we can do..is let them know that we are frustrated and tired too.  Let them know that we WANT to be healthy!  We want to move forward with plans!

We too are human!  We must share some part of our “humanness”with our kids……just let them know that we pray for an end to our trials.  That we want to be well.  And then, work toward small steps that we know that we can achieve…..like a weekend away as a family….or as in our case “Sleeping With The Sharks” at the nearby aquarium…so our son can feel “normal”….can forget that his Mom is sick…..

Let’s Be Honest!

Moms and Dads…let’s be honest!  As parents we want to be at our best always for our kids! We never want to admit that we do not feel good….let alone that our bodies are screaming at us to stop…we know that we have to keep going…our kids need us to continue on.  We hide our tears…our pain.

We don’t want anyone to know how bad…or how hard it is for us to continue…to make it through the day.  We can’t explain the pain…we can’t explain that we can’t tell you the truth….we can’t admit that we might want to throw up our hands.  Never!   We just smile…we move on…one step at a time.  We draw our strength from those around us and our Faith.  We know that we are not alone….that there truly is a purpose to what we are going through.  God tests each of us…..how we respond is the key.

I might feel like crying at the end of the day….I won’t…I chose to attend Cub Scouts with our son after work.  I wanted to be Mom…to be present…to see what he and his friends were doing firsthand…..No, I did not participate…thankfully, his Dad could….BUT I did not miss it!

Hang in there!  Our daily struggles keep us human….we understand more than most the meaning of sacrifice…..and we also have the opportunity to demonstrate in so many ways that we love…that we are present…in the moment with our kids…..

Ultrasounds

Underwent multiple ultrasounds today.  Due to the discomfort all ready throughout my abdomen……the ultrasounds were not a “comfortable” ordeal.  Technician was able to confirm that good images were taken….of course, as most of you all ready know….they really are not supposed to say anything else beyond that.

Felt quite sick once it was over…..had to just hang out for a while as I couldn’t even think of eating let alone getting in the car for the trip home.  Tummy settled enough to eat…..made it home to just lie down and relax.

Now time to wait for doctor appointment on Thursday where we will review the ultrasound results.  Also, will have a few more days of meds in system.

Positive note….I have been able to sleep the last 3 nights.  So that side effect of the meds is a good one.  Been well over a month since I could sleep for more than 3 hours.  Definitely good to get the chance to get some much needed rest!  Now to just get some more answers.

Church Family

I know not everyone who reads this will be a member of a Church Family. If you are, don’t forget this awesome resource!  Asking to be added to the prayer chain is okay!  It is okay to acknowledge your illness/upcoming surgery.  It is good to ask for those that are in your Church Family to know that you need prayer.  They do not need specifics…..it is up to you to share your story with those around you.

I tend to be too free with my speech!  So some individuals will not ask me about my health. Even when I try to sensor to the audience…some people just cannot handle hearing anything about another person’s health.  That is okay.  There are certain people that will hear more details than others.  For the most part….an answer like “I am undergoing more tests and have new meds” is more than enough to suffice.

If someone starts asking questions, however, I will answer from the heart….as appropriate.   Obviously some people will want more info while others will want to just be reassured that you do not have Cancer….that another surgery is not needed…..or the like.

It was so difficult to sit through Mass tonight due to the abdominal pain I am experiencing.   Yes….I say pain…although my brain just registers discomfort.  I cannot handle anything touching my back or sides…..it is just EXTREMELY  uncomfortable.  It was so hard…I did finally find a way to perch on the front of the pew!  I so miss attending!  However, going tonight so my son could participate in what he needed to do reminded me of why I am trapped at home on the weekend. It pushes me almost too far….so many prayers were raised as I sat waiting for the Mass to end.

Regarding Family and Friends

Family and friends often have questions and want to know how they can help.  Depending upon your comfort level and the individual, sharing your experience…how you feel….what tests are coming up….can benefit both you and those around you.

I have found such strength from the support of my family and friends! We don’t have to worry about our son….there are family and close friends who will pick him up and make sure he gets to Church Class or Cub Scouts or Baseball practice when my husband has to take me to doctor appointments.

Sometimes we opt to take our son to my appointment…..especially when a new doctor is involved.  I think it is important that he meet the doctor and have a chance to ask questions that he might have.  We are selective, of course, there are some discussions that you don’t want your child to overhear….you want to have a chance to get the information and then relay an “update” to your child in a way that best fits your child.

Our son has been very curious….he asks a lot of questions….this latest round, however, as I have mentioned has been the hardest for him.  His latest comment was “so glad that I did not have tumors”.  He has relaxed some and we have talked about my overreactive nerves.  He is excited that I have new medicine….and we continue to reinforce that I have the best medical team helping to make me better as fast as they can.

I must admit I really struggled with asking for help….still trying to be super Mom.  I have found though, that it has helped me to let go….to let others that are close to us help.  Our son has enjoyed going over to his friend’s house….or being picked up and taken to an event….it is a treat for him!  It has helped me to have the opportunity to get a little more rest.  Especially since I have to continue to work.

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