Sheila Paris Inspires By Refusing To Let MDD Slow Her Down
You've probably heard of multiple personality disorder? There should be a diagnosis of multiple disability disorder (MDD)!
We are human beings though, and not our diagnosis, or diagnoses (plural), so we need to make sure whoever is in our health care system to provide services to us, recognizes this.
Sheila's primary doctor put all her statistics of her MDD into a computer program, then made a decision that would have, as she says, "ruined my life."
The doctor, with her three computer patient apps, decided she was too high of a risk for surgery and informed her orthopedic surgeon. This scared him so much he refused to do her surgery.
Doctors can be wrong. They are human, after all.
She had to speak up. She made an appointment with another orthopedic doctor and explained to him what had happened before. She told him she was not a computer program, she was a human being with an indomitable spirit who wants to have a better quality of life -- even at the risk of proving her primary doctor's computer app program right.
"I'd rather take the risk of a bad outcome (like they say: the surgery was a success but the patient died) than not try anything. That would have certainly been a for-sure death sentence for me."
Lesson learned? Doctors aren't always right; they are human too. Her primary doctor was doing what she felt was right and the best for Sheila, to not allow her go through with a surgery that could have a devastating outcome.
But in her case, she felt she would get an even more horrible outcome if she couldn't have surgery.
The primary doctor had her mind made up, but so did Sheila. She got another doctor and…
Sheila says, "If, deep in your heart you disagree with your doctor, don't be afraid to speak up. After all, they are just as human as we are. Some will listen, some won't. Find one that will. They are out there. Never give up."
She indicates she hasn't had that surgery yet, so her primary doctor may turn out to be right after all, but she plans to come back to give everyone an update, with her own fingers, to put a good 'ending' to this story.
The above was recent. Let's start more at the beginning of Sheila's story.
Becoming a nurse, starting life out as a caregiver.
In 1979 with two young daughters three and six years old, no car, going through a divorce, no money, no place to live, and a record three feet of snow on the ground, Sheila started nursing school.
By 1981 she graduated with a four-year Bachelor of Science degree from one of the most esteemed programs in the U.S.A. with a 3.8 GPA, beginning a career she thought she'd be in until she retired around 65.
But that wasn't to be. Yes, she was an RN for two decades, sometimes loving it, sometimes hating it... but always having that feeling of satisfaction knowing she had 'paid it forward' and helped someone in need.
Sheila says, "You learn a lot about people when they are highly stressed and ill. My heart always went out to them whether they had had their gallbladders removed or they were involuntarily locked up for suicidal thoughts."
Never did she imagine she'd wind up as disabled as some of her most complicated patients herself, on oxygen 24/7, in a wheelchair, and dependent on others to be *her* caregivers. "That was the role I played for decades for my patients, the caregiver. I was never the one receiving the care."
What Happened Here?
The situation came on gradually. She had been in a car accident, rear-ended and whiplashed, years earlier. A surgery decades ago fused her neck at two levels.
Several forms of arthritis (osteoarthritis, rheumatoid and connective tissue disease) set in over the years into her whole spine. She always chalked it up to growing older, "It's not for the faint-hearted as they say."
Then while living in New Mexico at high altitude her doctor told her it would take about six months to get used to living at 7,000 feet. After two years and still huffing and puffing, she went back to him.
"My pulse oximeter reading was 87. Normal readings should be in the mid to high nineties."
That was the beginning of being continuously tied to the tether of oxygen tubing 24/7.
After tons of testing and specialist appointments the verdict was in: either move to lower altitude or die.
Rare Disease Catcher
The reason? She had been diagnosed with a rare auto-immune disease called sarcoidosis many years prior but it hadn't caused her any problems until the high altitude exacerbated her lung condition, where it usually hits primarily.
Lungs Not Looking So Good
Sarcoidosis is like Lupus, it can affect any organ of the body -- with a special affinity for the lungs.
At the time it was the altitude that brought out the symptoms of the fibrosis in her lungs causing interstitial lung disease, little invasive patches all over looking like a white tree branching out in both lobes.
Pulmonary hypertension went along with it too, a really bad complication.
Prior to moving her doctor also told her she was diabetic.
"Me? Healthy, vibrant, feel wonderful me? Now that I could breathe better on oxygen, I couldn't believe it. So I didn't. I ignored him. For years I put it out of my mind, ate my usual way, never tested my blood sugars, and did what a person in denial usually does: nothing."
Gobsmacked By Reality
After moving to a lower altitude in Washington State and getting established with a new doctor, he made Sheila see the diabetic counselor who forced her to keep tabs of her disease.
"Oh here it was: reality. So I'd take my blood sugars, sporadically -- like on the day I couldn't drink enough water, couldn't stay out of the bathroom, felt shaky, couldn't see well -- everything was blurry, enough so I couldn't believe it when my meter said my blood sugar read 604!"
So there it was. The big D. Diabetes. She knew it was time to face the music. "I was again the patient, not the nurse. It was time to wake up, accept the fact I did have diabetes and start doing something about it."
What couldn't she eat?
She finally got pretty responsible at taking a blood sample four times a day and injecting the insulin, but her eating habits didn't change much. See, she still had to be on prednisone, a steroid, to keep the sarcoidosis under control.
She says, "That made me want to eat the refrigerator. Not just the food. I started out at 122 pounds and maxed at 170. I was lucky; I should be over 200 pounds right now."
She's been able to keep her weight down to a reasonable 140 pounds but says it has always been a struggle to be on steroids and not gain weight.
"My doctor told me what I already knew, steroids make their own fat cells all by themselves -- even on a toothpick and water diet."
The Lethal Web Of Diabetes
Gradually Sheila couldn't feel her toes. She expresses it this way, "It was like someone had taken my toes during the night and transplanted someone else's onto my feet. I'd watch them move, but couldn't feel the sensation." Then that feeling creeped up almost to her knees.
Diabetes also attacked her vision. Besides having to wear prescription glasses, she has to use a six-inch magnifying glass for up close work.
She was devastated the day DMV flunked her on the vision test.
Her nephrologist says she's in Stage III of IV chronic renal disease and will eventually need dialysis, possibly in the next year or so.
Out of the blue, a blood test revealed MGUS. It's a complicated medical terminology meaning Sheila has the precursor in her blood for Multiple Myeloma (MM), another blood cancer similar to Leukemia.
Every three months for the rest of her life she has to get a special blood test to make sure her readings haven't zoomed into the Multiple Myeloma range somehow.
Sheila says she used to be a Shirley McLain look-alike, but the steroids blew her face up to look like she had "swallowed balloons." Other side effects from prednisone included a "buffalo hump" at the back of her neck, skinny upper arms, and a big belly.
She had to buy maternity clothes to accommodate her growing waistline. Then it gave her osteopenia, that last step before osteoporosis. Weak bones with holes everywhere.
Mental Health Is Important Too
Steroids can cause depression, but that has never been a serious problem for her. Yes, she says she gets depressed, but it isn't long lasting.
When asked why, she says with a beaming smile, "Oh, I have a great counter-acting disability for that: being bipolar! I'm nearly always on the 'up' side. Hypomanic. The perpetual Pollyanna."
She says she stays ecstatic as she racks up more and more online checkout carts. "Some folks go into eating frenzies, I go into buying frenzies."
Since she is allergic to every medication used for treating bipolar, she says, "I have to try to squelch those buying urges with sheer will power. Sometimes it works, sometimes it doesn't."
She says she could start a blog just on being bipolar. We don't doubt here at Ability Mission that she will.
Situation: Out Of Control
The steroids also have another effect that nearly killed her. She wants to tell this so it can be a warning to others who may be on the medication.
Sheila says the steroids mask symptoms. "Like when I was really sick I didn't know it. Last July 4th I spent a wonderful day at a barbecue with my family. Drove back to my home in the country, went to sleep at 9pm feeling fine. I had a tiny bump on my sitter-down, no big deal."
"I got up at 11pm to make a quick bathroom stop before going back to sleep. I couldn't get up. What was happening, I thought."
"I dragged myself -- half crawled -- to the bathroom at the other end of the house. Got there, collapsed. Lost consciousness. I'd come awake, try to get up, struggle, but nothing worked."
She did this for seven hours. All night she'd pull on something to get her legs under her to stand up but nothing worked. In a rare lucid moment, she noticed the medical alert button on her wrist.
She said she stared at it for the longest time trying to read it.
"Hey, this isn't a watch!"
She pushed it. And pushed it, over and over.
"I finally remembered what I had it on for."
She discovered this in a few rare coherent seconds of that night. The troops came. Fire department, paramedics, ambulance, police.
"I didn't even care that all I had on was a tee shirt, nothing else." The scooped her up into the ambulance to take her to the local rural hospital.
Realizing she was way too ill for their hospital, in record time they called for the helicopter to take her into Spokane's Sacred Heart Hospital's ICU.
"I was that sick and didn't know it. That little bump? It was now the size of a grapefruit, full of the flesh-eating bacteria which now required emergency surgery. I was septic all over."
The month prior she had paid the $57 for the MedStar helicopter insurance. Otherwise she'd be paying off $20,000 in monthly installments for that short but life-saving ride.
The doctors didn't think she would make it from the septicemia and gaping four-inch deep and wide wound. They doused her with antibiotics which she was allergic to but had to have.
To counteract that, she received IV Benadryl and Solu-Cortef (steroid) every four hours around the clock, saying, "All the meds eventually put me into a psychosis. The ol' 'where am I, what am I doing here' kind of psychosis. And they think I possibly even had a mini-stroke, a TIA."
But she did make it she says, thanks to the Lord not being ready to take her home yet. "He's still working on me."
It has certainly given her a purpose in life that she plans to develop to help others. She says, "I'm in the planning stages but I hope I can do some good."
The Worst Affliction Of All
Of all the previous complicated disabilities, the last one to set into her body has been the one with the most impact. Losing her mobility. Because of the steroids, she lost all the cartilage in both hip joints. Bone on bone in a weight-bearing joint is "no fun, let me tell you."
Currently she is bed bound. When she is lucky enough to get up and around it's with one of her daughters pushing her around in a wheelchair.
She says she does have a battery operated one, a Hoveround, but no attachment for a car, so they haul the manual one in the car for stores or wherever she have to go.
Quality Of Life Choices
"The remedy for my hip situation is a total hip replacement." Finding this brave hip surgeon has boosted her spirits since surgery is the only option to fix the immobility issue.
This doctor says he is called crazy by his colleagues since he takes on patients with so many medical complications like Sheila. He admits, "I know we can fix her hip, but it's the complications of recovery afterwards I'm concerned about. She is going to be one real challenge."
He agreed that her quality of life currently was not acceptable and said it would be worth it for him to take the surgical risk. Sheila is breathing a heavy sigh of relief and waiting to hear the date for the surgery to be scheduled.
Sheila says, "Some doctors are really angels on earth sent here to help folks. You just have to keep looking until you find these special angels. You know, I thought for sure I saw him duck through the door to make room for his wings."
After two hospitalizations for septicemia this year alone, she was placed into in-home care nursing.
"What a blessing! I got Physical Therapy, RN care and planning, Occupational Therapy, a Home Care Aid, a Social Worker, all sorts of medical equipment, and besides all the technical and professional help, the emotional support was phenomenal."
All of this was provided on a regular basis at her home in Liberty Lake, WA.
"I have Medicare and Premera Blue Cross as a supplement which makes me so grateful. I had sold my home in the country so I was able to purchase a chairlift for the home I now lease plus a walker, the manual wheelchair, a seat for the tub, and a bedside commode," she says.
Lazarus Rises Again
In the meantime, even with not being able to walk, she says she has this inner indomitable spirit that told her she had to do "something." That something was to buy a recumbent trike that has poured life back into her being.
"Yes, it still hurts when I pedal, but after ten or fifteen minutes my hips seem to smooth out those rough boney spurs from the arthritis and get into a rhythm with my pedaling feet."
Besides riding around her neighborhood she's managed to pedal two trips so far of twenty-five miles each on the Centennial Trail without using her oxygen.
"I'm really proud of that accomplishment and hope to do more long rides like that before my surgery to build up strength and stamina -- and muscle-power!"
Sheila has a list of medical problems that takes two sheets of paper to include them all when they are printed from the doctor's office visit summary, but feels contentment in her heart because she knows all this is for a reason.
Her philosophy in life is that all things happen for a reason, a good one. "All those diagnoses make up who I am and challenge me to deal with it and get over it."
Sheila says, "You have a choice. Accept it and make the best of it, or wallow in self pity and feel down all the time. I choose to embrace whatever life doles out and do something with it for good. Not only for me, but others as well."
Pedaling For People
For her, that means planning a trip across America on her trike (she named 'Lazarus') to bring awareness for the disabled, both physically and mentally.
"That's a long-term goal that may not happen until I'm seventy, but that's okay, it gives me time to plan the route and raise donations from sponsors."
In the meantime she'll be riding in the Tour de Cure in Spokane coming this Spring to raise money for diabetes research. She'll be a Red Rider (one who has diabetes).
"I'll go from my car to wheelchair to trike to pedal on the longest ride I can physically accomplish. I'm hoping for the 100 mile run but if I can just do another 25 miles that will be great too. I've already raised the $200 minimum. That makes me feel great to be able to put back some effort and funds for my community, especially for those who suffer from diabetes also."
From Despair To Delight
Sheila offers advice on some subjects she knows about personally.
"I know what you're going through is painful, chronic pain takes a toll; it's depressing and sometimes it looks hopeless; it's frustrating; your finances take a big hit; self-esteem takes one too; relationships either get stronger or they fall apart. The negatives can go on and on. Take those negatives and see how you can turn them around."
She goes on to say, "Embrace your disabilities by accepting what you cannot change, and figure out a way to make them work for you. Turn them around on themselves."
She knows you'll say, "What? How? I'm disabled, I'm stuck here on the sofa, bored with the soap operas, no one cares. I'm in pain, the doctor won't give me the narcotics I need and want,, I have no money, the rent is due, I need this, I need that, ad nauseum."
She says, "Make a plan. Set goals. Write it down. You know how to eat an elephant? Take one bite at the time."
Sheila's DIY Tips
Pain? Distract yourself for fifteen seconds. Then for thirty seconds. Increase to five minutes at the time. Pat yourself on the back. Repeat. Take deep breaths.
She says she's had to do this for hours at a time. She would eventually get bored with it, stopped watching the time and next thing she knew another hour had gone by without needing to use a medication.
She says she is trying to cut back on the pain meds.
"They never take the pain completely away anyway, so my philosophy is why bother with them. I mentally set my goal to cut back a certain amount each day. I don't miss them because I have a goal and it doesn't help that much anyway."
She believes it would take her being in a coma for her to not be feeling the pain, so she CHOOSES to just get along without the majority of them.
A great believer in exercise, Sheila says, "Can't walk? Pedal! Go to your local bicycle dealer to see if he has trikes. You don't have to worry about balancing or holding your head up. With a trike you lie back from a reclining position and guide with your hands. If you can't afford one, get to know the dealer. Maybe he will loan you one at times. It never hurts to ask." Voice of experience: her dealer loaned her one for nearly two months.
She goes on to say, "Look for a trike group in your area. Go to the meetings or call some of the members. They could be willing to loan you a trike during the week when they aren't riding. Or they might take you with them. Network, make those contacts which can lead to getting your feet into the pedals and getting the best low-impact exercise you'll ever want or need."
If you are depressed, she suggests to get active even by taking baby steps. Get out of the house, even if it's just to walk outside and smell the fresh air. She says if you can, walk or operate your wheelchair down the block. Meet your neighbors. Sometimes just someone giving you a smile and a wave can make you feel better, and who knows? Maybe they needed to see a smile too.
If you are diabetic? Sheila says, "Join a group. In person or online. Forge friendships with others with diabetes. You can never get enough education about the disease. Knowledge is definitely power. Sharing your ups and downs helps everyone involved. If they are nothing but negative, force yourself to respond with something positive for every negative comment they give you. It will help them, but more importantly it will start changing you from the inside."
She says she could take every single disability and make something positive from it. Disabilities are like a personal affront to her. It may get her down, but not for long. She believes it's only human to have down days, but the important challenge is to figure out how to bounce back from it with something positive.
Sheila encourages the disabled to remember to reach out for help as you have done here. The resources for each need are invaluable. "Don can't do it for you as much as he would love to, but you need to put the time and energy in yourself," she says.
She can hear you say, "But what if I don't have any energy?" Remember the elephant? That first one bite could be to look at a link from the workbook appropriate to your problem, and just read about it.
If that's all you can do, fine. You've done something. It's a move forward. She believes something from that link's reading will spur you to further reading which will lead to action.
Sheila suggests that if you can't read more right now, that's okay, wait until you can and don't beat yourself up for not doing it now. Guilt is not a good feeling. You know you will do it eventually so embrace that, accept it, and do something else.
"No, don't reach for the coke and potato chips!" she says with a laugh. Check out another link. Or call that social worker. Request information. Anything that busts that ball and chain of inertia is helpful.
The Calvary Is Coming!
Sheila says if she can be of help, you'll do yourself a service AND for her too, if you write her. Why? Because she gets a good feeling from helping others and she wants to help you. She has an inner passion to help the disabled and those in need.
"I'll be here if you just need someone to listen. In fact I listen better than I talk."