A letter from a doctor to those with chronic diseases

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A letter from a doctor to those with chronic diseases

To the Doctors of Chronic Illness Patients

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  To the Doctors of Chronic Illness Patients

MAJOR FLARE TIME

I try to think , how long has this flare been going on? A few days, a week? It seems I have had a flare somewhere in my pain ridden body for about 3 months now. When you have a number of issues and all of then give you chronic pain of some sort, one flare can blend into another. I have Fibro, PMR, OA, Peripheral Neuropathy , Spinal Disc Degeneration. So yeah I can have a flare with one ,two or all of them at one time and it seems like anymore that I am in a flare all the time. I am tired of being tired. Pain can wear you out!

I am tired of feeling this pain with every move I make, it is a struggle to even get up out of my lift chair ,my knees have been flaring the past few days along with both arms and shoulders so getting up and down and just moving HURTS. These flares I believe are because of the major weather change /Cold front that move through this morning bringing frigid temperatures. I always flare somewhere in my body every week about 12 hours before the cold front moves in. Spring and Autumn are big flare seasons but weather happens every day.

How do I keep on keeping on? What do I do to keep getting up every day knowing that it will be a painful day. My spiritual path helps me and motivates me daily, some days are harder but I find that if I can keep my mind busy studying something that interests me , I find that I have made it through yet another day. The Internet has been a Godsend and a blessing for me. I can research many topics, I can work on my blogs, I can be on Face Book  trying to motivate others going through what I am. Getting my mind off of me and on something else is the best thing I have found to get me past myself and my pain.
PATC

 I thought I would write a bit about myself as an introduction to this blog. I was raised in a secular home, my parents did study with the Church of Christ in our home for a bit and we all were baptized.In the Church of Christ baptism is a large part of  salvation. My parents went to church only a short while but found the church was very mean spirited and so opted out of the church life and so their life remained pretty much the same as it was before the church study, not that they were bad in any way just your normal household who had secular Christmas and Easter without the religion. My father was disabled with Rheumatoid Arthritis in his twenty's ,became disabled and when he got on disability he moved the family from Los Angeles Calif. to a very small 10 acre farm in the middle of the Ozarks in Missouri. We raised all of our food and lived a life with not much money and things but we always had food and shelter. We lived about 25 miles in the country from where I went to school,the town had a population of about 600, so we lived in what is called the 'boonies' or 'the sticks' literally. We lived at the end of a mile and a half dirt road at the bottom of a hill surrounded by either pastures or woods. I went to church mainly out of boredom it was a small Country Church of Christ ,very conservative and when it came to doctrines we butted heads a lot, but I still went because there was nothing else to do and there were  boys and some of my friends who went there. So it was an outlet for me. Although I wanted to be a christian I really had no good avenue to learn about Christ instead it was all about church doctrine . When I turned 16 I partied a lot when I could get out of the house, there was nothing else to do around there. I went to college for a few years , it was in college in an OT class that seeds of doubt were planted in me and where I pretty much left what little faith I had  and so after this class instead of going to church I really learned how to party instead. I later got married had 2 daughters. My religious life was up and down, guilt and free spirited, I went to various churches now and again but never enjoyed going so I didn't most of my adult life. My Christian life was on and off throughout my adult life.For about the last 20 years when the Internet came into the home I discovered a whole new world of various religious and spiritual thought and so I managed to journey through quite a bit of those. From Wicca/witchcraft, paganism, Taoism, New Age, New Thought even Christo-Paganism . Although they each had something to offer I found it never satisfied me in the way Christ does, there was never any hope for my future , never addressed the real issues other than your free to believe what ever you will and pick and choose a god and form them in the way you choose to see them, nope I just knew too much of the truth of Christ to fall for that. Although there is much within the Organized religion of Evangelical Americanized Christianity I find distasteful, in fact it is one of the reasons I lift Christianity in the first place, along with my stent in the Word of Faith /Name it Claim it aspects of Christianity. Those aspects of Christianity left a nasty taste in my mouth for many years and in fact still does. But through it all Yahshua /Jesus Christ has been there for me and in that I am profoundly grateful. Although I threw out the bathwater of religion I did not get rid of Christ.My husband  was raised in the Church of the Brethren and was active in that church for a while when in High school but now he is pretty much secular, he got burnt bad in the Word of Faith racket and hasn't felt a need to return. But there is hope, he gave his life to Christ as a young man and I believe Christ is more than able to keep him in His hands.

My beliefs now within Christianity is very Eclectic, I pull out of various thoughts what seem more right than others. I mainly pull out of the Grace/Finished Work and Anabaptist thoughts and I have found good solid apologetic has been instrumental at helping me know the reasons for my beliefs and remain true to Christ because it has given me ample reasons and information to believe. Speakers like Paul White Ministries, Greg Boyd/ReKnew,  NT Wright, J. Warner Wallace , William Lane Craig  to name a few.

So that is pretty much my life in a nut shell. Yes I felt nuts for many years, I was torn in so many ways it wasn't funny, my beliefs and assumptions went back and forth, I did not know if I was coming or going, I never knew how I felt about the issues of our day because I flipped flopped so much because my foundation was being torn apart. But Christ has remedied that situation, through the different apologetic ministries that have help me lay a solid foundation of  the truth of Christ. I have chosen to take  my stand for Christ and his ways in my life  and now I feel like my foundation has been set on solid ground and out of the sinking sand of the silly notion that everyone's truth is valid. I now am convinced  that only Christ is the Truth, and I am thankful for that revelation. I learned  that it is about Christ and not me. I learned that it is not what I do, or how I do it, it's about knowing that it's about Christ and who He is IN me. The Good News, The Gospel is that I have right standing with God because of what Christ did for me and for no other reason, all I have to do is except that exchanged life, Christ's life for mine, and in that and that alone makes me in right standing with God. That is the good news. It is not about me or how I live my life, but about Christ and how He lived His life and died for you and for me. My life will change from the inside out , not by any thing I can do or will, my life changes because Christ lives in me and as I trust in Him , my life transforms into His, nothing I can do will change me, only in trusting in Him to do it within me. But the good news is that I am ALREADY  righteous in God's eyes right  now ,as I am ,even at the very moment I trusted in Christ life . I can never be more righteous in God's eyes than I am right now without every doing anything because it is all about Christ and His Righteousness in me. So now I live my life in the light of His Grace , His free gift and learning what that really means.

In Christ

PATC

MY LOVE/HATE RELATIONSHIP WITH PHARMACEUTICALS

As a person with many kinds of chronic issues and chronic pain I have an up close and personal love /hate relationship with pharmaceuticals. They are a Godsend on one hand and they seem to be sent from the  Devil   on the other hand. Frankly my world would be far worse without them.
 My dad had RA about 50+ years ago I can remember when I would get up and go to the bathroom and then go back to bed seeing him sitting in the dark at the kitchen table drinking a cup of coffee and having a cigarette at all hours of the night ,suffering in pain from RA. Back then all there was for pain was aspirin , I remember a giant bottle of them sitting on the counter along  side of a bottle of Maalox . But Pharmaceuticals have come a long way since then for the treatment of RA and chronic pain. Although I am still looking for what will work best for all my issues. I can tell you that without what I do take my life would be so much worse than it already is.
Pharmaceuticals are a life saver for many diseases and illnesses, many cancers and illnesses are either cured or put into remission because of them. Many who are in extreme pain are given relief from them. Many lives have been saved and their lives extended because of them. Most of us with chronic illnesses and pain have a better quality of life because of them. So that is my love affair with pharmaceuticals. Now the hate aspect of this relationship.
Many of the medications I take have many adverse side effects. We have to be real savvy when we begin taking our medications. We have to be educated as to what to look for when we begin any kind of medications and watch for possible side effects. After we educate ourselves on our medications we have to then weigh the pros and cons to taking them, do the benefits I may get from this medication be worth more to me than what it could possibly cause me down the road?   Lets take prednisone for instance , in my case I take it for my  Polymyalgia Rheumatica (PMR) , it is the only medication that will work to relieve the extreme pain and stiffness that  (PMR) causes, pain medications do not even touch it. With PMR the pain levels sky rocket up to 8-10, the use of my arms become a major issue for me, I am only able to use my arms from the elbows down , causing me to be extremely dependent upon my husband to help me with even the easiest of jobs like combing my hair , reaching for the faucet to turn water on , assisting me with putting on or off of my clothes, the list is long folks. Prednisone gives me back my life,period. Although at higher doses it makes my face balloon and cause weight gain. Here is me 3 years ago on the left and me now.

Me on over 40mg of Prednisone

Me now on 10 mg. of Prednisone

Although the weight gain and fat face is horrible for my vanity, it is worth the better quality of life to take prednisone. Prednisone causes insomnia at least 3 times a week which means I am wide awake until 2 or 3 in the morning or I don't sleep at all that night. But since I don't work and I am home all day I get my sleep time whenever it strikes me to take a nap. I believe it also caused me to have hypertension and  type 2 Diabetes which are both in control with medications, which by the way have their own side effects to weigh in on.

I take about 8 to 10 medications   1 to 3 times a day. So I have to determine if a medication I take can be switched with a herb or  vitamin that I can take instead. 

Or if a change in diet can help me. With herbals you have to be just as educated with them and their side effects and whether or not they can be taken with the other medications I might take. You have to almost be a herbalist or Doctor to figure all this stuff out. With herbal and vitamin and diet alternatives I find that the expense can sometimes be more than medications are for me because they are not covered by insurance. So for many of my herbs and veggies I will grow them myself and make tinctures from them. Also they take so much longer to feel any effects from them that sometimes it is not worth the pain to wait it out till they begin to work. But for me I am more prone to give herbs a chance before I reach for that pill bottle, because herbs for the most part help the whole body system and not just the one problem . They are more likely to be more healthy for me than medications, so I try my best to go that route first, if they don't give me the results I need then I turn to medications instead.

So there is my love /hate relationship with pharmaceuticals. We do this dance every day.

Prednisone Uses taken from here

Prednisone is used to treat conditions such as arthritis,blood disorders, breathing problems, severe allergies,skin diseases, cancer, eye problems, and immune system disorders. Prednisone belongs to a class of drugs known as corticosteroids. It decreases your immune system's response to various diseases to reduce symptoms such as swelling and allergic-type reactions.
So here are  a few of the possible side effects for taking Prednisone a more thorough list of side effects
Possible side effects: Elevated blood pressure, Headache, Hives,Osteoporosis, Stomach ulcer, Pancreatitis, Muscle weakness, Skin redness, Allergic shock, Vertigo, Water retention, Myopathy, Esophagitis,Petechia, Convulsion, Excessive sweating, Distended abdomen,Ecchymosis, Loss of muscle mass, Irregular menstruation, Achilles tendon rupture, Poor wound healing, Thin skin

INSURANCE SCAM OF OBAMA CARE

Today my hubby had to re -apply for our 'Obama Care' insurance for another year and we found out that we do not make enough money to qualify for it. Yes you heard me , we can not get any insurance through this new and better way of making sure all us poor folks can afford health care, ObamaCare crapola. I thought that was the whole point of ObamaCare, to help the poor, but apparently we were lied to again.
My hubby has been home since Thanksgiving 2014 for health reasons and so far has not qualified for help, and I finally got some SSI because I am disabled but on a technicality could not get Disability. So we are trying to live on $488.00 a month. So now we are told that in 2 weeks we will not have insurance. That means we will be unable to afford to see a doctor and get the medicines we need.  Yes this year is ending and the next year beginning on a happy note.  I am a bit pissed at the system, but I am not in fear or anxious over this,  I believe we will figure out what to do and what our options are.
healing blessings

PATC

SO VERY TRUE IN MY CASE

got from here1. You can't decide which hurts more: Getting on the toilet or getting off...

2. You need a forklift to get in or out of a car.

3. Even though you think you're walking normally through the airport, you're probably not if a security guard offers you a wheelchair.

4. When someone wonders why you want one of those picker-upper appliance thingys, tell them it's to brush the cobwebs off the ceiling.

5. The next time you absently wrap your leg around the leg of a chair or hook it over a rung on a ladder, you’ll quickly remember why you shouldn't.

6. Turning over in bed requires a law of physics no one has discovered yet.

7. You'll learn the hand-over-hand technique for climbing up the refrigerator when you can't get up off the kitchen floor.

8. When you put your pants on backwards, you're tempted to leave them that way.

9. Your absolute favorite bathroom accessory is that big shiny grab-bar.

10. Your absolute least favorite bathroom accessory is that adorable little throw rug that matches the shower curtain. It’s evil.

11. When your knee buckles, it's perfectly acceptable to swear.

12. Allowing 5 or 10 extra minutes to do anything that requires movement.

13. One, two, buckle my shoe. PLEASE...

14. You wonder if salon pedicures are covered by insurance. They should be.

15. You know it’s okay to slow down. You're not in a hurry.

16. If you look good in shorts, keep wearing them. You don't need to cover up OA.

17. When someone asks what you want for your birthday, you answer “A case of Tylenol.”

18. Curbs and stairs are projects from the devil's workshop. Ramps, escalators, and elevators were invented by angels.

19. You need to stretch your legs every 15 minutes, even during a concert when it will annoy everyone around you.

20. Trying to reach all the stuff in the top cupboard is bad enough, but trying to reach the bottom cupboard, shelf, or drawer requires deep knee bends. Are you kidding?

21. Eau de Ben-Gay. Nobody wears it just for the smell of it.

22. You love the pool and the hot tub. Until you try to get out.

23. You walk like Charlie Chaplin.

24. You have to say “bye-bye” to all those gorgeous shoes in your closet. But you get to keep the matching purses!!

25. Someone asks what that thing in the microwave is and you tell them it's the hot pad for your knee. And don't eat the bag of frozen peas… that’s the icepack for your knee.

26. Kids keep wanting to stick their finger in the hole of your neoprene knee brace.

27. Getting dressed is an Olympic sport. As is getting undressed.

28. You dream about kicking a football or doing the jitterbug.

29. You don't complain, but you sigh a lot.