I'm still living!!!!

I'm sorry that it's been so long since I've posted here. I've been very sick for the last 6 months or more and almost bedridden. I've had a severe swallowing problem caused by severe acid reflux, in which my esophagus had actually shrunk. I haven't been able to get most of my medications down and it has caused me to be very sick. The pain levels were daily 9 or 10's and even with the pain meds that I could get down (oxycodone) it would still be about an 8. I haven't been able to do much of anything, especially for my family, which is what hurt me the most. I love my daughter and husband very much and they are very supportive of me. I hated having to load even more work onto their shoulders, or even worse, the work just not getting done. My daughter is only in the 1st grade,so she doesn't understand why her Mama can't play with her or why I'm always lying down. The one thing that I did make sure of to do though was to always go over her home work every day. I didn't want her falling behind in school because of me. Some days this was done from my bedside. Most often from my recliner.............my faithful recliner, where I live!

I had had the swallowing problem for over a year and I should of had something done about it way back then, but money is tight around here and I just didn't think I could afford it. I thought I could just learn to live with it. But the swallowing just kept getting worse until finally I couldn't eat or drink and especially not take my medications. The only ones I could get down were the tiny ones. The others that I HAD to take, like my blood pressure and diabetes meds, I would have to break into small pieces and take little bits of them throughout the day. This wasn't the way they were intended to be taken and my health did suffer for it, but it was the best I could do. Then when I finally did decide that I couldn't live with this condition and I needed to seek medical attention I had to follow the chain of command to get anything done. First I had to see my primary doctor, just to have them refer me to a gastroenterologist. Then I had my initial consult with the doctor who schedule an endoscopy for me 1 1/2 months away. They didn't tell me at the time where it would be done at so I assumed it was going to be at the hospital right next door to them. Seemed logical to me!!! Well, it wasn't and it was actually going to be at a place too far to drive for us and still be able to be home for my daughter when she got out of school. So I basically had to start ALL over again. Go back to the primary doctor , get another referral, blah, blah, blah. It basically took over 3 months to have the endoscopy done once I finally decided to proceed with it. By that time, I had already lost 30 lbs from not eating (which I was happy about!!).

I had the endoscopy done this past Thursday and I'm already feeling better as far as swallowing. They did do some biopsies of my stomach, but don't expect to see anything there. I have started back on some of my meds, but I can't start them all at the same time. I had to take it gradually, otherwise I might overdose or something!! The main med that I was missing was my neurontin. I had been on a dosage of 800 mg 4x day before I had to stop taking it. Right now I am taking 400 mg 2x day as of yesterday. I will have to stair step this dosage up gradually until I reach a level that is actually helping me again. Even the 400mg 2x day is helping a little. Funny though, I didn't realize how much it helped me until I couldn't take it and had to do without it. I'm just thankful to God that I can take it again.

And it's coming at a crucial time..........fall and the onset of winter. These cold fronts have been killing me with pain, stiffness, etc...... I have fibromyalgia, osteoarthritis, ankylosing spondylitis, sjrogens, migraines, and a host of other medical problems. These are all affected by the weather for me. I don't know about you.

Anyway, I just wanted to say I'm sorry for being gone for so long , but that I'm back and hopefully will be posting regularly again. I really love this blog and I hope you do too.

Teresa

Feeling Like Garbage

February is almost upon us and, for me, this means the most difficult time of year has arrived. I feel like garbage every single day. The weird, congested, achy, sick feeling across the middle of my back always flares up this time of year and it's the hardest pain for me to deal with. It doesn't go away when I sit down like my other pains and it's often accompanied by a feeling of sadness. It's a very heavy feeling that makes it very hard to get out of bed in the morning. In addition to that, my legs, hips, shoulders, arms and feet hurt and I'm having daily headaches AND more migraines again. Oh, and fatigue too. I can't forget the fatigue. I live in a split level house and having to go up and down those stairs a dozen times a day is exhausting. I feel like I need to lay down on the landing for awhile to get the strength to make it up the rest of the stairs. It's not fun. I wish I could just go to bed and not get up until this part of the year is over with.

And the hardest part? This could go on for months. Sometimes, I start feeling better in April but often feeling better doesn't start until May. Last year, it was July.

It's very hard to keep a positive attitude when faced with months and months of feeling like garbage. But I am determined  to stay positive and be happy this year. I don't want to be depressed, angry and bitter on top of being physically miserable.

I suppose the first step is to stay in the moment and take it day by day, instead of focusing on months of misery ahead. Maybe I'll feel better sooner this year. I do have some new tools in my fibro toolkit. I bought the The Trigger Point Therapy Workbook and I've had great success in treating my hip pain. I think the weird pain across my back may also be caused by trigger points so I'm working to figure out which ones so I can treat them too. And, I've discovered that doing a short, easy yoga routine every day helps reduce my pain levels.  I've also read some good, hope-inspiring  books about fibro lately which I'll share more about later because I'm tired now, which I'm sure you understand all too well!

Putting Things Into Perspective

Not so very long ago, it seems I was being given my 1st diagnosis of fibromyalgia and chronic fatigue syndrome. Of depression, high blood pressure, cluster and migraine headaches............of polycystic ovarian syndrome and the list just goes on and on. From the very first mention of these illnesses I had felt like it was the end of the world at least the end of MY world. I've continuously pondered what my life was going to be like with the illnesses short term and long term. I've went through all the stages with each new diagnosis, trying my best to just get to the acceptance part of my life as I grieve it's loss.



On Tuesday of last week, something happened that has helped me put my life, with all it's illnesses, into perspective like nothing else ever has or ever will do again. My Mother was diagnosed with Idiopathic Pulmonary Fibrosis, which is a terminal disease, and advised she has roughly 6 months to 1 year to live, barring the miraculous hand of God. All of a sudden I don't notice the pain in my back and legs and neck and arms now because I can't feel them over the pain in my heart. I'm sure at some point the numbness will wear off and I will once again be caught up in my self administrations, but for now I can only feel the sharp pain in the vicinity where my heart once took up residence.



A lot of people would say that my Mom has led a full life and has no regrets, which I believe to be true. However it is not for her loss that I grieve, but my own. I have a 6 year old daughter that I wonder how I'm going to raise without the wisdom of my Mother. Who do I go to for advice now? And Christmas just won't be the same without Mama's Fudge Pound Cake! How will we fill the void that she is going to leave?

All that I truly know now is that she is suffering more than I've ever suffered with my own illnesses. All her independence is gone and she is totally dependent on others now for her most basic of needs. I do not wish her to have to spend 6 months like this. I pray that God will be merciful and take her quickly so that she does not have to suffer so.

I've finally found something that causes more pain than that of Fibromyalgia............the loss of my Mother's freedom, personality and life. And this is so very painful that only God's peace can give relief. No amount of pain medicine will help this ailment. Only trusting in my Lord and Saviour, which is also my Mother's, will give me Peace in knowing that she will be in a much better place where there is no pain or sorrow ever again.

So in hindsight now I know that I CAN get through this illness called fibromyalgia, Because if I can get through the loss of my Mother, I can get through anything. She's my best friend, my confidant, my advisor. For many years she was my teacher, my doctor and nurse, my seamstress, dietitian, taxi driver, etc.... You name it and she filled the need for me. I'm going to miss her so much. I already do miss her. Her vibrant spirit and strong will. But I know there is a life BEYOND this life where she will be free and unencumbered by this earthly shell of a body.

Here in this life, she has been my prayer warrior to God regarding my illnesses. She has asked for strength and grace to bear my burdens and even for healing. And God has answered many of these prayers with a yes. I know once she leaves this world she will still be praying for me, but from now on she will be able to ask God in person to help me through each day. Fibromyalgia has no hold on me. Nor any of my other illnesses for one day I shall be with my mother again and neither of us will be sick any more. We will have blessed perfect bodies and there'll be no more pain or suffering.

I thank God for helping me Put Things Into Perspective!

20 Things That Make Me Feel Better On Bad Pain Days

What are some things that make me feel better on bad pain days?

1. My Electric Blanket (the warmth is such a comfort).
2. A big , soft hug from my daughter.
3. My Bed (it's softness, yet firm, is the most comfortable place to lay).
4. Prayer (GOD always provides peace and comfort and lets me know I'm not alone).
5. Stretching (it seems to warm up my muscles and tissues, providing relief).
6. A Card or Letter from a friend.
7. Writing in my diary or blog (it helps me get off my chest all the feelings that are bottling up).
8. Take-out Food (no cooking!)
9. Talking to a Friend.
10. Believe it or not, SOMETIMES, gentle sex! (It takes my mind off the pain and provides some feel-good endorphines).
11. Creating something - crafts, pics, poems, etc... (It again takes my mind off the pain and makes me feel useful again).
12. Reading an Inspirational or Fiction book (It takes my mind off the pain and transports me to a different place mentally).
13. Making plans for when I have a GOOD day (It gives me something to look forward to).
14. A Nap (Pain is very exhausting!)
15. Buying something (inexpensive) for MYSELF (usually online as I can't get out of the house).
16. Chocolate, just a little! (Chocolate makes everything better!!! jk)
17. A long hot bubble bath (being surrounded in warmth & sweet scents is so comforting).
18. A Massage (it actually releases feel good endorphines!)
19. My little girl giving me one of her stuffed animals to comfort me.
20. Being held by my hubby as I try to go to sleep.

Can you think of some things that make YOU feel better on your bad days? I'd love to hear from you and get some ideas.
I know that some days NOTHING is going to make me feel better, but I have to keep trying because I have to keep living. The moment I give up, I might as well be dead! Because there's nothing worse than living a life without HOPE.
Gentle hugs to you.

Odd Symptoms

I have had fibromyalgia for many years now. I have been diagnosed for about 11 years, but suffered with it much, much longer. In addition to fibro I also have Ankylosing Spondylosis, IBS, PolyCystic Ovarian Syndrome, Sjrogens, Osteoarthritis, Migraine and Cluster headaches and God only knows what else!
Despite all of my diagnoses I still have symptoms that no one can seem to explain to me. The doctors tend to look at me like I'm crazy, so I've stopped mentioning them! I just wonder if other people with fibro have any of these same symptoms. Or even if there could be another diagnosis lurking out there?
I'm just going to list some of these weird symptoms and, frankly, wait to see if anyone responds.

Here goes:

1. Swelling of the hands and feet. Sometimes extreme swelling. I can't even make a fist with my hand. My fingers look like Miss Piggy! And very often one hand or foot is larger than the other. NOT always the left either.

2. Sudden Deafness and then Ringing in the ear. Usually just one ear, but occasionally this will occur in both ears at the same time. It starts with the deafness , then the ringing tone. It lasts between 20 seconds and 2 minutes. Then it's gone with nothing to show for it.

3. Extreme chest pain. More middle to left sided. It literally feels like I'm having a heart attack. However, my blood pressure and other vitals are perfect. This can last for hours at a time for days on end and then suddenly disappear. Sometimes however I'm left with the feeling of tenderness, as if my chest has been bruised from the inside out.

4. Complete numbness of my hands and arms, followed by tingling. I wake up like this every morning. If I sit with my arms resting for any period of time it will also occur. I am contributing this one to carpal and cubital tunnel syndrome. However , I am still baffled because I've already had the surgical release and nerve transposition done in the right arm and now I'm having these symptoms again??

5. Metal headaches. I name them so because I will get a strong metallic taste in my mouth when I experience one of these headaches. It is very severe, yet is not a migraine. Or at least not my usual ones. This can last from 2 to 12 hours. Pain medication will ease the headache a bit, not a lot, but nothing takes away the metallic taste.

6. Mid-thoracic back pain and tenderness. It feels much like the pain you experience in your back when you have a kidney infection, but it is located much higher on the back than the area of the kidneys. It actually is so sore that the entire area feels like it's bruised, but it is not. This does NOT go away, EVER. No pain medication or muscle relaxer has ever helped this pain.

7. Gnawing stomach pain that hurts from the front of my stomach all the way through to my back bone. NOTHING helps this except total submersion in heat. I have slept many a night in the bathtub with scalding water because it was the only way I could find any relief and the pain was so great that once I did find relief, I immediately fell asleep from pain exhaustion.

8. Sharp, burning, piercing, stabbing, throbbing, pin-pointed pain in various parts of my body. This is extremely painful. An 11 on a scale of 1 to 10. It stops you in your tracks. It can last for a couple of hours, but comes and goes in spurts of seconds at a time. There are no visible signs of any distress on the body part. This can be in a hand, foot, joint(ankle, etc..), breast, even my head. You can't walk on it, hold anything, put pressure on it.........NO USE of the effected area because the pain is so intense. It literally takes your breath away.

9. Pain in the bottom of my feet, as if they are severely bruised, yet they are not bruised at all. I literally cannot walk on my feet. I have resorted to walking on the sides of my feet when this pain strikes and it is occurring more & more frequently. This can last from hours to days at a time.

10. Swollen and sore lymph nodes/glands in my throat, causing sore throat and ear aches. This can last several days to a week at a time. Yet I don't have a cold or any type of congestion symptoms.

11. Twitching of my eyes. The eyelid will literally jerk or twitch. There is no pain associated with this, but I have noticed some blurred vision. Not sure if they are connected or not. This can go on for hours at a time.

12. Sensitivity to touch/feeling. I don't mean that I am sensitive for someone to touch me (although I am!!). What I mean this time is feeling textures. A rough woven piece of cloth, yarn, egg crate mattress pads........basically ANYTHING that is not smooth. It causes me the same irritation that some people experience when running fingernails down a chalkboard. This is an ever present irritation for me.

13. Hiccups! More and more lately I have been getting the hiccups and they are becoming harder and harder to get rid of. In fact, the only thing that works is for me is to completely hold my breath for 20 seconds and then exhale through my nose. Some days I get them 6 or 7 times in a day and they will continue until I do this breathing exercise.

14. Irritated and stuffy nose. This used to just been 1st thing in the morning or after I'd been lying down for several hours, but now it is constant. I can just barely breathe through my nose now. I don't have a cold and after a very painful series of allergy testings, I am declared to be allergy free! So what's the deal?

15. Bruising on my body, without me having hit or hurt it in any way. There is a possibility that I could hit it without knowing it and not notice the pain because I'm already in so much pain + on pain meds, or that I just forgot that I hurt it. But I really don't think either of these are true in my case. This happens at least once a week for me, probably more because I don't look at the back of my body very often.

16. Jerking in my sleep, or as I'm going to sleep. The doctors have diagnosed this as Restless Leg Syndrome. and this may very well be it because I don't know much about this ailment. However, it's not JUST my legs that jerk. It's my entire body.........ESPECIALLY my head. It will jerk from side to side, even when I'm not going to sleep. If I just get still and restful, my head will start jerking. I do get a kind of "irritated" feeling before it jerks sometimes, but often I have NO warning. This is both frightening and embarrassing.

17. Extremely dry, flaky skin all over my body. It does not itch. But if I do scratch it, I get white "ashy" marks where I scratched. Lotion does not help it very much either.

18. Dry, crusty , flat mole type patches of skin on my body. Usually brownish in color. These are generally small, 1/2 - 1 inch in diameter, but DO itch. And if scratched, they DO bleed. These do not come & go. They stay.......forever!

19. A very high illness/infection ratio. I stay sick! I have either a virus, sinus infection or bronchitis at least every 3 months. Usually more frequently. And once I'm sick, it takes me a while to get over it. Sometimes I have to take 3-4 rounds of different antibiotics before I get well.

20. Unusual cravings for food. And NO I'm not pregnant! I have dealt with these cravings since I was a little girl. In fact, I usually eat daily based on what I am craving. For example, one day last week I was dying for some sauerkraut. I haven't eaten the stuff in about 20 years! I crave beef before and during my cycle each month. And I crave lettuce or salads when I think I'm dehydrated. Many times it's weird stuff......like dill pickles & ketchup or vanilla soft serve w/french fries.

I have more weird symptoms than just these 20, but for sake of time I did not list everything. I realize I'm probably a freak! If you have an answer or suggestion about any of these, or if you deal with any of these yourself, please feel free to post or comment. Also, if you have any weird symptoms of your own, please list them also. It is my hope that I will find out that I'm not totally alone!!! LOL But also to find a reason or put a diagnosis with the dilemma!

Gentle Hugs to you all xxxxx
Teresa

WHAT IS PAIN? by Teresa Steading

What is pain, O do you know?
I get it when it snows
And when it rains and in sunshine
Seems I get it all the time.

No matter what the weather here
The pain rains down as thru the air
In legs and hips and head above
Just like a truck hit me, my love!

Can't stand to move or see or hear
Pain really kicks me in the rear!
But I have just one thing to say
Pain ~ You can't make me give up today!