I am content.
I am actually happy.
I have been blessed in so many ways, but let me tell you about one of them.
I started on new vitamins and pain killers prescribed by my doctor.
(WoW! The world is not just wracked with min after min of unending pain!)
My new pain killers take the edge off the pain, but doesn’t completely eliminate it.
(That is long as I don’t push past the limits of what the medicine can do)
Ill explain it like this: Ever have a headache that is so intense your every focus is on how bad that headache is pounding?
You go medicine cabinet and take something for the headache so you can function.
Soon the headache dies down. You are able to continue about your day.
Now if someone asks you, How is that headache? You will ponder that it is still there, throbs a bit, but is totally manageable and under your control.
However, you can push the medicine beyond its limits. If you go that evening and listen to a high school marching band in a gymnasium the headache will return in full force.
That is how I am managing now. I am learning the limits to my medicine and not pushing it on a daily basis.
(However, Life is fun when pushing the limits a bit to enjoy it!)
I am enjoying life with small waves of pain not enduring a hurricane or tsunami.
As I read my Bible reading today, I found a list that I could use to help me (others) enjoy the holiday season.
- Be self-controlled (Don’t over spend)
- Put on Faith and Love (Faith and Love are meant to be shared everyday…not only Sunday)
- Hope for salvation as a helmet (Christ IS the reason for Celebration)
- Encourage each other (Smiles are free! Pass them out to others!)
- Live in Peace (Forgive as you have been forgiven. Life is too short for holding onto grudges and anger)
- Encourage the timid (Encouragement can come from things as simple as a note in a card or cookies in a tin)
- Help the weak (If you are capable of walking, park in the furthest space from the door.)
- Be Patient Always (This includes shopping lines, parking lots and traffic congestion)
- Pray Continually (There is no greater gift than to pray for someone else)
- Give thanks if ALL circumstances (No matter how difficult your life might seem right now, remember there are people praying to have it as good as you do.)
<List is from 1 Thessalonians 5:7-18>
I am insane by this definition.
(Try new doctor, new doctor cant figure it out, Try new doctor, new doctor cant figure it out)
This A.M. I had a
pain clinic A refuse to see me since I don’t have a diagnosed condition.
They referred me to another clinic but it is about hour+ away from my home.
(Called them not realizing that a ‘doctors office’ needs to make the referral. Had to deal with an extremely rude office worker. I hope she was having a bad day and that isn’t the way she normally treats patients!)
Why, is this so hard?
I called my Primary Care’s office to request a referral. My doctor was surprised that Clinic A refused to see me. He is going to try to get me into another office closer to home before we have to go with the one far away.
I am in a massive ‘Catch 22’
My doctor doesn’t want to prescribe any medication unless it is ‘life or death’ situation because he doesn’t know what he is dealing with.
When I go to other doctors, they find it hard to believe with my history that I am not on more medication.
(So if you are as sick as you say you are…..then why arnt you on more medication?)
Plus since doctors don’t want to see me more than once, They refer me back to my primary care doctor to get medicine prescribed.
(Remember, he wont prescribe medicine because he doesn’t know what I have.)
Another good ‘Catch 22’
I go to my family doctor. He says he has no idea what to do to treat me. He is at a loss for what to do.
I go to a specialist. If no other doctor before him has found it, he doesn’t know of any new test to run. So he claims it isn’t in his field and doesn’t want to see me again. PLUS they never know what field it might be or who else I could see
I go back to my family doctor. He doesn’t know why I haven’t seen him in 9 months. Yet he still has no idea what to do for me or anyone I can see. Aren’t I seeing any specialist ?
I wrongly assumed that when I hit my limit for pain, I could have pain medication prescribed.
I have dealt with my pain on my own for decades.
(Not days, weeks, months, or years but DECADES!)
I need help now. AND I don’t want an addiction on top of the rest of this mess either. I just want something stronger than alternating acetaminophen and ibuprofen throughout the day.
(Lifetime limits on these medications…what’s that?)
I have now spoken to my Primary Care office 3 times. They are trying to find a painclinic closer to home that will accept me as a patient. I am now on choice E.
<A denied, B far from home(hasn’t accepted or denied), C denied, D denied)
I honestly didn’t think being accepted into a pain clinic would be such a difficult task. The problem is that I have an illness without a diagnosis that is wide spread and long-term.
Once again, If your illness isn’t simple and easy…..no one wants you.
I made an appointment for my family doctor tomorrow.
(I have been his patient for 16 years.)
As I told my parents today, If he finds out I am coming in he will probably declare it an office holiday and close early before my appointment.
Honestly, He has been the only doctor to stick with me through the years. He admits he has no idea what I have or what to do for me but will help me in any way he can.
(For that I am very thankful!)
That is why I waited ,a few days after my bad news from Cleveland Clinic, to contact him. I never want to take out what I think about MOST of the medical profession on him.
I have an appointment to discuss pain medication and about my asthma medication not being covered by my insurance next year. I have my list of medications printed out with notes next to each one I want to discuss with him. I am definitely prepared.
So why do I feel guilty about asking for pain medication?
(He believes I am sick and in pain.)
Even though I have wanted help with my pain for years, I have remained silent with my pain.
I am fearful of being addicted to pain medication. (All I need on top of everything else is an addiction.)
(The pain management doctor assured me there is non-narcotic pain medication)
I am also concerned over what other doctor’s will say, I can hear them now
- You just want pain medication
- Perhaps if you weren’t on so much medication you would feel better.
Why do I feel guilty for doing something to make myself feel better?
I been fighting for a long time with the pain of this illness. I take pride in the fact that I have been able to adjust to my pain with prayer, mediation and relaxation techniques. However, sometimes those things just ARENT enough.
I find it incredibly hard to talk about pain.
I believe that a person adjusts to their pain. Pain can start at a 7 but through years of practicing pain management techniques it becomes a 5.
(Poor nurses don’t know what to do when I say, I am having a good day but answer High 5 or Low 6 )
Even worse, WHAT IS WITH THE SMILEY FACES???
I can smile my way through each number on that scale. (It comes from YEARS of practice!)
(I can smile for 8 hours at a FIVE or 4 hours at a SEVEN)
This little smiley chart I believe has created more problems than it is worth.
Oh, she is smiling. Since smile face is a pain level of ONE then she must be fine!
(W R O N G)
Like most poker players, Chronic Pain Patients also have ‘tells’
(And I am not sharing mine)
The results are in
(Big drum roll)
Everything looks good. The doctor wanted me to know that he believes my problem is not in his field nor does he know which field it might be in. I should continue to keep well hydrated and discontinue taking my ‘water pill’ for high BP after consulting my regular physician.
(So if I drink more water then I can walk/move without pain?)
After 52 days of waiting for results, a nurse from his office called and read me a letter he was sending to my primary care physician.
(He couldn’t have gotten off his duff and let me know everything was ok at day 17, 29, or 33. )
I actually received the call on Friday when I was ‘out and about’ all day. I kept myself busy on Saturday also and tried to do so on Sunday until my body just couldn’t do any more.
Yesterday evening , as I sat on my couch in pain, the gravity of the whole thing hit me.
Last November, I decided enough was enough. The pain was too intense. I was GOING to find a doctor to help me through my illness.
This is what I accomplished:
- Spend a ton of money on a high deductible
- Went BACK to not having a name for this illness
30 plus years, I have spent searching for a name to his horrible intruder in my body.
I have a family doctor that understands but wont help with any symptoms because he is afraid of doing more harm than good.
I haven’t been able to find ANY doctor to just HELP me through this.
(YES, I am in a bad dark place today. Please forgive me but it does happen. I keep thinking of erasing this, but some people need to know that sometimes my strength does give away)
I decided ,last night, I was going to take up smoking.
(I was going to take up drinking, but I KNOW I don’t like the taste!)
Why am I taking up smoking?
I decided that because all of my test are coming up ‘normal’, I must be pretty darn healthy.
(CRAP! I am healthy?! I have to maybe live with this excruciating pain that increases with each year and other symptoms for perhaps 25, 30 or 40 more years?! )
My TV then decided to start mocking me with TV advertisements.
“You have chronic dry eye…..this is a TREATABLE MEDICAL DISEASE.”
(OH GREAT! Some doctor took it upon themselves to find and diagnosis ….chronic dry eye. CARED ENOUGH about someone with CHRONIC DRY EYE to research and find a solution. WHERE IS MY DOCTOR TO DIAGNOSIS THIS MONSTER INSIDE OF ME?!)
Oh, Don’t even get me started on the multiple commercials for every drug under the sun on TV. At the end of each commercial they list the ‘side effects’ that could happen.
IF ANY of these side effects happen please consult your prescribing physician immediately for help.
(hmmm I have MANY of those ‘side effects’ as symptoms and NO ONE gives a rat’s rear quarters about them.)
(maybe I should start taking those medications. THEN say I have side effects. THEN maybe they will take my multitude of symptoms seriously.)
(ok maybe not)
However, smoking sounds like a good idea.
I told my husband , as I was rocking in pain, that tomorrow I wanted him to pick me up a few packs of cigarettes.
(Seeing me almost launch a shoe through the big screen TV when an advertisement came on for local heath care system he knew to tread lightly)
Husband “So you are taking up smoking?”
I explained my flawed plan in detail. Smoking will shorten my lifespan. And from my view point at this time, that ISNT a bad idea!
He explained that I don’t like the smell of smoke.
( Not to mention they are just about as expensive as health insurance deductible.)
We abandoned the cigars idea quickly because they smell worse than cigarette’s.
Finally, an idea! The smoke from a pipe doesn’t always smell bad and I am sure the tobacco in it has the same health effect.
Last night (through the pain, tears, and laughter) we decided that a corncob pipe would work the best.
Today, I am full of endless tears.
I have yet to turn on the television
(in fear that I might launch a shoe missile through a medical advertisement)
I am still holding onto my smoking idea but haven’t yet purchased my new pipe.
Today, I am not strong. Today I am weak.
Today, I mourn the loss of a dream.
Today is day number 47.
I have been waiting 47 days for test results from Cleveland Clinic from my last round of test.
I know 47 might not be long. However, I was given a paper during the last test stating that my doctor should have the results in 14 days.
On day 33, I called the doctor’s office.
(Well with CC you cant just call that doctor’s office. Even worse if you are using a toll-free number being out-of-state. It takes me between 15 and 30 min to get through to my doctor’s office to leave a message for him)
I was told they would leave a message for the doctor that I am awaiting my test results.
On day 40, I called the doctor’s office AGAIN
I was told the doctor had been out of the office for a few days. She would give him a note saying I am ‘Patiently waiting’ for my results.
It is now day 47. I guess I will have to make ANOTHER call tomorrow.
Yeah right, That is hard to do.
I want my test results!
I went through those test. I have put my hope in them.
My hope is that the doctor is looking further into the test
(Not that they test were misplaced)
My hope is that the test show something that requires more review
(Not that the doctor is just waiting for me to give up and go away)
My hope is that I am given my test results in a timely manner
(Not being treated like a second class patient because I am not ‘terminal’ so I can wait indefinitely)
My hope is that someday, my test results will matter to a doctor, not just to me.
I had an awesome Wednesday this week.
For the last two years, I help with an after-school program at our church on Wednesday. I enjoy seeing the kids each week and helping with what I can do.
Unfortunately, what I can do is less and less. I walk so slow I pretty much need to sit in one place the whole time.
I decided this year was going to be different. I was going to use a wheelchair and be more active.
My new chair has yet to arrive. So my husband packed up the old chair.
(no legs for my feet and pretty beat up)
We arrived. I got into the chair. Much like a child on their first day of school both of us were nervous. He asked if I wanted him to walk in with me.
“I am ready, I got this”
(He was as nervous as I was when he gave me a quick kiss goodbye)
I wheeled up to the handicapped button, opened the doors and wheeled into my new life.
IT WAS AWESOME!
I didn’t have to count every step I took. I was able to take care of myself with confidence.
It’s the little things.
I threw away my own water bottle
I was able help children find a room
I was able to move over to someone and have a conversation
(not waiting for people to come to me)
Not to mention, it didn’t take me 15 min to walk down the hall!
I was mobile, I felt free
Yes, I stayed in one area most of the time. And my arms were still so very sore the next day.
However, it was sooooo worth it!
(My arms would have been sore from the crutches too)
Watch out world….she is ON THE MOVE!