Back Home

When I looked at my blog today and saw the last post was on September 26, I became aware of how these last weeks have slipped so quickly by - life can be like that sometimes. I have been very ill (yes even more "ill" than normal!). I've survived 2 bouts of Septic Shock, each one requiring a tour of duty in ICU. The source, I'm told is Urinary Sepsis, but honestly I don't know how the doctors can be certain that the infection started there. The infection got into my bloodstream and spread to all of my organs. That's what they call 'septic shock'. There is a blood test for Lactic Acid that the doctors check if you are in sepsis. Normal is below 1, and mine was 3.6 at the highest. The doctor said that I have a strain of e Coli. I've heard that Apples and undercooked beef are prime sources for e Coli, and I've been eating a lot of apples lately, so I wonder if that is where it came from. Personally, I think I ingested an amount that a healthy person would be able to tolerate, but which I, in my immune suppressed state could not. I hope and pray that it is under control now and am so happy to be home with my family. I still feel very weak, dizzy, and I have pain, but it's getting a little better day by day.

During my first hospital stay, I was feeling much better on my last day and started watching the Home Shopping Network (DANGER!). Since I have my Visa card number (MORE DANGER!), I hopped onto the phone and started buying "things" I just "couldn't do without". It's a dangerous thing for me to be feeling better, but still under the influence of Dialudid, and all alone in a hospital room. Most of the things I bought are very nice and useful. One of my more questionable purchases was a 2 1/2 foot tall fountain featuring a fairy with butterfly wings and lots of tiffany style glass work and a tiffany lamp that shines down on it all. I love fountains, and also I had this idea that my kitty would find it and drink from the fresh, flowing water. However, when I tried to introduce her to her little oasis, she went ballistic and clawed her way up and over me as fast as she could go. Acting out the very definition of insanity, I actually tried this a second time, with exactly the same results. I think it was the sound of running water that scared her - she thought she was about to get a bath. Hmmmm..... it's like my daughter said, "I don't really think it's something we NEEDED", when I asked her what she thought of it. She was trying so hard to be polite and not burst my bubble. Oh well, it's here now and not going back - it'll be a good conversation piece, as it sits in our dining room faithfully pouring forth it's water over the years. It's definitely unique, and our guests aren't likely to have seen one anywhere else....

In between the two bouts with sepsis, I have vague recollections of receiving a lot of packages in the mail (from my shopping spree), talking to Bucky and Ruth one day, trying out my new steam mop (yes, another HSN purchase), working on paperwork for my Disability Insurer, a few doctor visits, Amanda getting sick, and me just generally feeling cruddy and trying to make it through the days one at a time. Then came the second round of Sepsis and the whirlwind of all of that. It feels like you get sucked into some ailment, then into the hospital, and everything is a blur and then you are plopped out on the sidewalk and sent home. There is so much I miss or forget, so many loose ends. I know it's frustrating for my family to have to tell me the same things over and over, and I pray for their patience and understanding - I really am trying to do my best, it's just soooo hard.

I was shocked to realize that Summer had completely given way to Autumn during my illness. There is so much I missed, not the least of which is helping my son with his schoolwork and spending time with my daughter. We had planned to spend the whole day Friday Nov 2 together, but I ended up in the hospital. I also blitzed right through my husbands BIG 60th birthday, although I was relieved that I had been able to obtain a special gift for him months before.

Another thing I lost track of is the mountain of documents that have to be provided to my Disability Insurer by Monday, Nov. 12. Michael requested all of the documents for the past year and they were all stacked up here waiting for me to do something with them. Mom took them to Kinko's today to get them all copied. It will cost around $60 for the copies, plus we've already spent almost $300 on the documents themselves. Then I'll have to overnight them to Liberty Mutual since we're almost upon the deadline now. I'm sure that won't be cheap since the documents weigh over 7 pounds (and this is only partial records for the last 12 months!). Anyway, it's almost done now and I won't have it hanging over my head (until the next go-round!). It does make my head hurt sometimes, just trying to stay afloat in the mounds of paperwork, Medicare "stuff", medical bills, pharmacy bills, etc. I just have to take it a day at a time and do what I'm able to do for each day.

I miss swimming too. I haven't been in nearly 2 months, and it's the only physical outlet my joints will tolerate. I'm hoping to get back over the weekend or early next week. When I make it to the pool I'll know for sure that I'm on the up side of this ordeal. I can't wait!

I have no travel plans for the fall, but most of my family will travel to the "home place" in Louisiana for Thanksgiving. This includes my 20 year old daughter and her boyfriend. It's his first trip over, and a traditional rite of passage for anyone that is seriously dating a member of the family. It's quite a change from life around metro Atlanta, and there have been some that just couldn't deal with the shock of it all. I don't believe this is the case with her boyfriend; they have a very stable relationship and he seems to simply adore her. No matter what a shock the backwoods of Louisiana are to him, I think he'll do whatever it takes to adjust. I really wish I could be there. I know it will be a memorable trip, full of fun and lots of stories to share afterwards. I wish could join them, but simply must sit out this time around. I have been blessed to visit twice this year, and that will likely be the best I can do.

It's great to be home and back among "the living".

Deja Vu

Last Spring was a tale of Emergency Room sagas; I think everyone in our family except for Michael went at least once, some of us twice. I'm sure we made some one's Jaguar payment - maybe even two. This year I carried on the tradition all by myself.

I had this strange pain in my right leg for a couple of months, so finally went to N.Fulton and had it checked out (I was fearful of a blood clot). After an EXTREMELY painful exam, they concluded there was no clot and sent me home.

Less than 1 week later, on the day of Will's confirmation, I awoke with a strange chest pain that went all the way around my chest, like a large rubber band being pulled tighter and tighter. I was also nauseous, so reluctantly I stayed home and missed his confirmation. When Michael got back home, he took me to the ER at Crawford, and they said I had a "mild" heart attack, because some enzymes were elevated. (Later, the Cardiologist decided it wasn't really a heart attack). During the exam, I mentioned my right leg pain. They checked and found not one, but TWO blood clots. They put me on Lovanox shots 2x a day and Coumidin. The Lovanox was truely a pain. My insurance company took forever to approve it, and it left ghastly bruises all over my arms, legs, and tummy. The Coumidin is no big deal, except I have to go every week to get my blood checked. Then they adjust the Coumidin dosage according to how my blood test comes out. Dr. says I'll be on Coumidin for approx. 6 months.

Now, it's nearly time for our long awaited trip to Louisiana, and my heart Dr. hasn't released me to go. I went to the clinic yesterday and had my blood taken for the Coumidin test, and the nurse is supposed to call me today with the results and with the Dr.'s green light (I'm hoping!) to go on the trip.

During all of this, I was tagged with new labels, "Pulmonary Hypertension" and "Congestive Heart Failure". The second one is kind of weird, because it sounds so scary, and (to me) it seems that if you have "Heart Failure", you would be dead. Well, I'm not dead, but I am told I have "Heart Failure". Hmmm. I suggested to the nurse that they should call it something less ominous.

Anyway, this Spring I was in the ER or Inpatient 4 x so I guess we've made our Jaguar payment for the year. Maybe we're done for awhile - I can always hope. Wonder if we'll ever get the car that goes along with all these payments?

Procedures

They call them 'procedures' or 'outpatient surgery'. They talk in silky, smooth words that slip off their tongues like butter and drip with confidence. 'I've done this 300 times and never had a problem', 'My patients all say it was so easy and painless'. There must be a class in medical school where they learn how to do this. How to talk patients into signing up for procedures that they would never subject themselves to if they knew the TRUTH.

I don't do well with 'procedures', or the 'Versed thing'. I am wide awake and alert and concious and REMEMBER everything. A very good doctor at Piedmont Hospital discovered this in 1994. She immediately stopped the 'procedure', and called in Anesthesia to sedate me. Now, in 2007 I've had numerous other 'procedures' at Piedmont. Before each one, I tell the doc. that the 'Versed thing' doesn't work for me. They pull my chart and see what has worked before, and they call in the Anesthesiologist. It works great that way.

Crawford Long is different. One year ago, while hospitalized, I required a 'procedure'. It was one that I was very familiar with - I'd had it at Piedmont many times. When I asked about sedation, they said they would be using Versed. I explained that Versed does not work for me and refused the procedure. Then they kept sending in nurses, assistants, and finally the doctor (Dr. Fox - that should have tipped me off), all trying to convince me that Versed would work this time. We even agreed on a hand signal I could use in case I was awake when I was not supposed to be - a signal the doctor promised he would watch for and STOP the procedure if he saw it. I was hoodwinked.

In the procedure room, I was wide awake. The doctor started shoving the apparatus down my throat. I started gagging and gave the hand signal. He ignored me and kept pushing the thing down my throat. Then I started clawing and grabbing at him and the machinery. He just pushed harder. I was gagging and crying and clawing and fighting him the whole time. HE LIED TO ME. He ignored me and just crammed the equipment down and some one (I couldn't see) kept grabbing my arms to restrain me. I felt like a rape victim.

Soon I was left alone in the room sobbing. I never saw the doctor again. He didn't check on me, tell me the results, or (God forbid) apologize for ASSAULTING me. I took pictures of the bruises they made on my arms from the struggle, and have thought from time to time about legal action. The simple truth is I don't have the strength or energy for legal action. But, if there was anything I could do to prevent others from this experience, I would do it.

Now it's time for another procedure. They want to poke around in my heart and lungs and measure the pressures in there. A Cardiologist from Crawford Long called me to explain the procedure. When I asked about sedation, he said 'THERE WILL BE NO SEDATION'. So I refused the procedure. I think he was so arrogant that he couldn't believe I would do that. But I did. I've had it with arrogant doctors who just want to meet their numbers, make their money, and refuse to treat each patient as a real PERSON, who just might know more about their body and their reaction to 'procedures' and drugs than the pompus doctors do. I find it absolutely appalling that a doctor would allow a patient to delay a needed procedure, just because they won't do it THE DOCTOR'S WAY. So basically this doctor is saying his ego is more important than my health. I think I'm the lucky one because that's not the kind of doctor I need.

Meanwhile, my PCP is getting me scheduled to see a Cardiologist at Piedmont. Maybe I'll just go back to Piedmont for all of my care, since they have a good track record for treating me in a HUMANE manner and modifying the 'standard procedure' as necessary for me, a very NON-STANDARD patient.

The Verdict is in - Maybe

I went to Dr. Daily (Infectious Disease) and he studied my CT scans and agreed with the Radiologis and ER doctor - said I am 'a very sick lady' and have 'acute Mastoiditis'. So thats 3 doctors to 1, so I'm going with the majority. I have to finish out the Cipro and if it's not cleared, either go to IV antibiotics or a stronger oral one. Still have the constant headache and nausea, feel like I've been run over by a Mac truck. I am totally noise and light sensitive, they both make me feel like crawling out of my skin. And the abdominal pain that is at times WORSE than my joint pain.

There's always a twist though. Michael did some research and found that Sarcoid can attack the Mastoid bone and mimic Mastoiditis. So, this whole thing could be from Sarc and not an infection. The only way to tell is surgery. yipee, can you tell how thrilled I am?

After I take my morning meds and a double dose of Percocet, I can squeeze out a little bit of 'quality time', which I'm using very judicously. I usually get one more window of 'feel ok time' late in the evening (late for me), usually around 8. Thats when my evening pain meds kick in. Other than those two times of day, my physical life is misery. I put my best face on and try to focus on the positives, try my best not to dampen the spirits of those I love, and just take a moment at a time. Distractions help, music helps, seeing my children smile helps, a kiss from Michael helps, loving my kitty helps, naps help, making tea in my new Dragonfly teapot helps (and sipping it!).

Stumped

Ok, so today Amanda drove me to see my ENT doctor, the same doc that has operated on me at least 3 times and treated me for 10 years. He looked at the CT scan and saw the abnormal fluid in the mastoids and said, well theres no way to have fluid in the Mastoid unless it comes from the middle ear. He looked at my ears and said they were clear. So he basically had no idea why I have fluid in my mastoids, pain in my ears and back of my head. But he strongly disagreed with the ER doctor about Mastoiditis. He seemed to not really have a clue what is going on with me or what I should do next, and he didn't even really seem like he wanted to get involved (too complicated?). I was surprised and left feeling like I'd wasted my time. He had no idea what the problem is or how to fix it. So, left to my own devices I think I'll go see my Nerologist (since after all there is excruciating pain in the back of my head), and my GI doctor (since I also have excruciating pain in my left pelvic region). It was kind of funny, Dr. Jackson (ENT guy) didn't have a clue what was going on in my ears, nose, throat, etc., but seemed 100% certain that I have diverticulitis (sp?). We'll have to see if Dr. Jagiella agrees. In the meantime I'll take the Cipro and go with the flow. I guess I can always take my breakthrough pain meds or go to the ER if it gets too bad. Anyway the silver lining is I got to spend most of the day with Amanda and we even did a little bit of secret santa shopping (shhh).

Migraine-ish Mastoiditis

Sunday morning I awoke to the worst headache yet. It occured to me that these headaches have all been in the lower back of my head, and usually my migraines are in the front of the head. So, I thought, maybe it's not a migraine, maybe I have a blood pressure problem.

So I pulled out the cuff and snapped it on, and yep there it was: 210 over 110. I took it 3 more times just to make sure. Then I called my Dr. and he said do not pass go, do not collect $200, go straight to the ER.

So off to the ER we went. After a $100 deductable and a CT scan of my head, it was determined that I have major infection in my mastoids - both sides. These little gems are right in the lower back of the head - amazing - right where my headaches have been. So I've been walking around with this infection for about a week and a half now, when Dr. Butler said any infection needs to be treated within 48 hours because of the drugs I'm on. ypiee, what fun. Mastoiditis, I discovered, can spread into the bone, requiring surgery. It can also lead to Meningitis if not treated promptly and aggressively. No wonder I've felt like the bottom of a wet diaper pail for the last week. The one bright spot to the ER trip was 2 pain shots and some temporary relief from the non-stop pain.

So I started on Cipro 500 MG 2x daily and of course pain pills to mask the constant agony that I used to call a life. And of course no more Remicade until everything is completely cleared up...so my Sarc can have a Christmas party, and probably a New Year's party too - all without the interference of any of those nasty little TNF inhibitors or auto-immune suppressors to dampen their fun. I just hope that unleashing the Sarc monster won't cause a flare-up and God forbid, a hospital stay.

This morning I woke up with no headache (although it did return later in the day), so based on that I think the Cipro is working. I'm just hoping its not too little too late.

Tomorrow I follow up with the ENT specialist who once told me "I can cut off a person's whole head if I want to" - now isn't that comforting. On the other hand, I would probably feeel a lot better if he did.

I have to go to the GI specialist too, because I've been having intense pain in my lower left abdomen. I had an abmormal CT scan in that area last year; maybe it is related. Who knows. I need a personal secretary just to keep up with my medicines and doctors and tests. Am I dying? Or will this pass? I dunno. I guess I'll find out when I find out.

Meanwhile I haven't begun to shop for Christmas; its kind of hard to do when you're in bed with pain for 18 hours out of every day. Hmm. Maybe I'll give hugs this year.

Oh What a Relief it is!

I'm reminded of that old Alka-Seltzer commercial "plop plop, fizz fizz, Oh what a relief it is"... guess that tells a bit about my age. But pure relief is what I feel this morning. I woke up with NO HEADACHE & NO NAUSEA! Tired? yes. Joint Pain? constantly. But no Migraine. I'm really glad because Will is home sick from school and I have to be at the hospital for a 10:30 appointment this morning. Taking care of his appointment and mine will be so much easier without the Migraine.

So, what's been going on around here for the last 3 days while I've been consumed with flashing lights, nausea and Ginger Ale? Well, last night John came home with a Christmas Tree for us. We just keep running into scheduling hurdles and its now 12/14 and we still haven't bought a tree. So John came to the rescue and surprised us last night. It was really sweet and thoughtful of him to take care of that for the family. He's still waiting on the final yes or no from the Alpharetta Police Department. We know he passed all of the tests, including the oral interviews, but he doesn't have a final answer/job offer yet.

Andrew is still working a temp job with UPS. It is supposed to end on 12/22. He's working on a lot of other leads for employment after that date, including a possibility of being hired on at UPS as a regular employee. He's completed interviews with Comcast, and is waiting for a final yes/no from them. He's also looking into work at SmokeJack. I think he's hoping we take a trip to Lisbon after Christmas and wants to go along. Its been 7 years since we last took him, and it would be great for him to get to go again.

Michael is having a good month at work. Sales and Renewals are up, thanks to his top notch Customer Care. That really seems to be his niche. He finally went to the doctor about his persistant cough and breathing problems. He's been diagnosed with several allergies: Dog, Cat, and Dust Mites (of which we have plenty!!), and with Asthma. They put him on some new meds and he said he hasn't had a "breathing spell" since he started the meds. That's really good news, because he's been carrying a nebulizer around all the time and using it several times a day! It's also great news that he doesn't have a lung problem. Hopefully he's back on track and will feel much better.

Amanda finished her finals on Tuesday - all done with her first semester of college! She doesn't go back until January. Meanwhile, she's been working 2 jobs - Theater Tech for two different productions. The last performance is Sunday 12/17 and she will be burning the candle at both ends until then. On Monday, I'm betting she'll be complaining of boredom...but she'll have a bit larger bank balance to show for it all.

Will is enjoying playing basketball. His first game was last Saturday, 12/9, and his team won by 2 points. He got the star for best effort. If we could just keep his shoes tied snugly, I think he would do even better. This week he's been complaining of a sore throat. No fever, and the throat looks ok to me. But I finally let him stay home today and have a 3:45 doctors appointment for him this afternoon to check it out.

Tomorrow at noon I have a date with Grandpa Bill. We're going to sip tea and he's going to tell me stories while I snuggle up on his big sofa. What a great way to spend a Friday afternoon!

That's all for now, I've got to get a quick shower and rouse Amanda (my designated driver this morning).

Beat to the Punch?

OK, so this is day 3 of the Migraine wars. I found some Frova tablets and took one along with 2 Percocets before getting out of bed. My head was already starting to hurt, but no flashing lights or nausea. Then I started with the Ginger Ale and a Phenegran. Now it's 10:00 AM and I'm nauseous, but managed to hold down a cup of yogurt and the Ginger Ale. My head is not hurting and there are no lights. So basically I just feel like I'm about to toss my cookies any minute now. I'd say I beat the Migraine to the punch today. Still feel like my stomach has been pulverized by a prize fighter, but at least I'm not bed-ridden like the last 2 days. Just look for the Canada Dry and Phenegran at my house and you'll find me close by.

Migraines Again

I seem to get in these cycles of migraines, they come in bouts. First the lights flashing, then the headache, then the nausea. I've been nowhere except the toilet and my bed for the last 2 days. Just one of the side effects of Methotrexate and Remicade. I took my last $10 migraine pill today, so if it comes back tomorrow I'll have to go to the pharmacy and get more. I have plenty of Canada Dry and Phenagren, Soup and Crackers. I'm going to try to drag myself into the shower now and maybe smelling better will make me feel better. Or maybe thats just wishful thinking. I would really, really, really like to feel better tomorrow. When these days happen I miss LIFE. I miss my FAMILY. I feel so alone and useless, and life starts feeling pointless. Maybe tomorrow, just maybe... it will be different.

And so we try again

Back home from the hospital, flare 'semi-settled', I'm now on 20 mg of the devil's brew daily and still my joints are huge and hot before I even get out of bed. My weight is worse than ever, and I'm overwhelmed thinking about how long it will take to get back down to 10 and how my legs and feet are so stiff and painful I can barely walk now. Still reeling from the massive IV doses and Morphene and just the whole chaos of it all. But today I tried to start again. Saw Barbara, even though I missed 1/2 of my appointment due to the traffic. Got to have my monthly Remicade, no infections around to delay that. Then took a long nap with the bionicare on my right leg. Even had a plesant time with my daughter, I don't think I said anything wrong or hurtful and she smiled a lot. Good food in the fridge - real homade food from my Mother, what a blessing to have. Now I'll go find my kids and try to make sure they know I love them before they go to bed. Tomorrow I will keep trying.

Walk a Mile in My Shoes

Finally had to go to CLH last Friday and admintted to hospital to get the flare under control. So I got 180 MG daily via iv of Presnisone plus plenty of tranquilizers to keep me from going nuts, and lots of Morphene for the pain.

It was a real trip this time. Due to a mix-up on my meds, I ended up going into withdrawal on Friday night and turned into a raving lunatic. I made this huge scene and ripped out my iv and was trying to escape the hospital without any oxygen. They had to call security and there weare these doctors and nurses and everyone trying to 'talk me down'. Turns out it was ALL CHEMICAL, the ER intake had not passed along my meds info to the next department, etc, etc, and by Friday night I was in cold turkey withdrwawal from a half dozen meds that I HAVE to have on schedule, every day, on time. It gave me a real appreciation for what people who are detoxing must have to go through. But at least they know they are detoxing, and they are given support to help ease them through the detox process.

It was a real mess, but when I awoke about 3AM in my room, there was this sweet lady just sitting there next to me. Turns out, I had been assigned to have a constant "sitter" for the remainder of my stay. These "sitters" just came and went, quietly just being there with me. If I wanted to talk, we talked. If I didn't want to talk, they just quietly attended me. It turned out that every single one of them was a Christian or seeking Christ, and we always ended up having such special fellowship! It was truly amazing, the sharing that happened between me and my "sitters" over the weekend.

Looking back, there was clearly a purpose in this episode. I was visted by my family, 2 of the hospital chaplains, and my pastor and a friend from church. The chaplain visits were amazing. I've never had a hospital chaplain visit me before, but for some reason ??? I checked 'Yes' on the box requesting a chaplain visit.

The 2nd chaplain that came in did something so profound. We talked about my greif over the loss of my abililty to be a part of the Worship Team, and to use my career to bless people in the corporate world. (You see, that was always my reason to get up in the morning and to the 'corporate thing' - it was a cover for me to try to show Jesus to the people I worked with). This is something I have rarely talked about because it has been so painful - like I would want to know WHY would God take away my ability to minister FOR HIM? Like being spurned by a lover. Very painful. Well, this chaplain really 'got it'. And then he helped me understand some things, and left me with SUCH HOPE for the future! This verse has new meainng for me now:

Isaiah 53:5But he was wounded for our transgressions, he was bruised for our iniquities: the chastisement of our peace was upon him; and with his stripes we are healed.

My pastor has told me over and over the same thing, but I just didn't 'get it' until this weekend as I sat in the hospital with this sweet spirited, gentle man from South Korea. He explained how even God (temporarily) turned his back on his only son on the cross, and that he HAD do to that in order for Jesus' sufering to be REAL. And in order for me to MINISTER to people, I have to truely WALK THE PATH myself. Then it becomes REAL and I can connect with hurting people and minister to them. I ended up leaving with such a sense of purpose and hope, and yes - gratitude for all of the sharing with my 'sitters' over the weekend.

Romans 8:28 (KJV)
And we know that all things work together for good to them that love God, to them who are the called according to his purpose. And we know that all things work together for good to them that love God, to them who are the called according to his purpose.

I have a nw acceptance. I am walking this path for a reason. Whether I see the results in this life or the next, it doesn't matter. Each pain, each hurt, is in my path for a reason, that reason being MINISTRY to other hurting people that can't be done unless you've actually WALKED THE PATH.

Stubborn

This time the flare is being so stubborn. I've been taking the extra Prednisone for 3 days now, and I feel worse than before I started taking it. Not a good sign, I'm afraid. Joints worse, breathing worse, chest rattle worse. And the nightmares, God the nightmares. They just keep coming and coming and my mental state is on the fritz. I don't want to have to go to the hospital, but at least there I would get some support. Around here, it's just like 'lets ignore Mom for as long as we can and maybe she'll just go away". And if I dare to ASK for anything, you would think the world was coming to an end. So I just don't ask, and so I don't get what I need to get better. It really stinks. They all act like I'm such an imposition on their lives, and I know I must be. After all, how long should they be expected to put up with this? This was never in the bargain - for any of them. But here I am, sick and getting sicker - needy and getting needier and just praying to God to either make me well or take me home.

A Flare

I've been feeling it coming on, joints swelling, chest hurting, cough, rattle, it always seems to happen when I go below 10 MG on the demon drug. I've tried every day to mentally battle it, to keep swimming, to tell myself I would level off, that it would be different this time.

It was not to be so. Yesterday Dr. Leeper listened to my chest and said if I weren't already on so much Remicade and Methotrexate, he would put me up to 60 mg of Prednisione. We compromised at 20. He couldn't believe I had been swimming that same day. How? he asked. How can I not? was my answer. I have a life to live, kids to raise, THINGS TO DO.

After Dr. Leeper, Amanda and I went to little 5 points. She really loves going down there, and it gives me joy to see that. We went in a shop where a bird had flown in, and the shop keeper was trying to shoo it out with a broom type contraption. She didn't have any luck at that while we were in there. We looked at vintage clothes, crystals, incense, trinkets and toys, and just plain wierd stuff. We ate lunch at a place where the front wall is a huge garage door (like at a mechanic). The door was wide open and a nice breeze came in. We were right on the street and we could people watch while we ate. It was nice. Then I could walk no longer, so I took up residence in the window of a bakery and sipped Lemonade while Amanda walked around. A guy with a teal painted skull walked by a few times. Some girls with about 80% of their bodies tattooed came by, and there was this one guy trying to sell everyone newspapers. If you wouldn't buy one, he became borderline violent, so we stayed as far away from thim as we could.

Next, we drove north to my next appointmnet. We were early, and there was a Great Clips across the street, so I decide to get a quick hair trim before my 6:00 appointment. That was mistake. I think the black guy cutting my hair had never cut a white girls' hair before. He took F-O-R-E-V-E-R. He started a 5:10 and finished at 6:18. At 6:00 I tried to get up from the chair and leave, but he woulndn't let me. I still have no idea what he was doing, but whatever it was, he did it ONE HAIR AT A TIME. My head weighs at least 1 extra poound because of all the goop he kept putting in there. And I have such a simple haircut! All he had to do was follow the cut, trim it up, blow dry it and be done. It was the strangest experience in a hair salon I've ever had, like some perverse twilight zone version of "Just a routine trip to the hair salon", with a hideous cackling and off-key music playing in the background.

Finally, I did make it to my next appointment and then back home. It was a long day and I was tired. My O2 tank ran out just as we got into the Alpharetta City Limits. Today was a setback medically. Not only does the DEMON DRUG interrupt my sleep cycle, but it impacts WHO I AM, HOW I ACT, and worst of all HOW I THINK. And then it takes SO LONG to wean back down again.

I struggled with the decision. When I was preparing my morning meds last night, I put the 20mg in. Then I went back and took them out. Then back in, then back out. Then when I was struggling to lift one of my feet off the floor with both hands to put on a sock, I succumbed. I put the 20 mg back in, and in it stayed.

I have become so swollen that I can barely walk, dress, move even. My weight is way up, I think because I'm so swollen. Of course it will go up again when I start taking more Predninsione. It's like a vicious circus ride that never stops, only winds tighter and tighter, with less options at every turn, fewer paths of escape.

And then there was THE DREAM. THE DREAM I had the night before going to see Dr. Leeper. It was the most horrifying dream of my life. I was visited by DEATH, taunted by DEATH, mocked by DEATH, until I finally woke up in a cold sweat and had to take a shower, change my clothes, and the sheets. It shook me to the core of my soul, making me fearful of sleep. But I did pray, and I was spared another visitation last night. Well, to be honest I didn't sleep at all last night, so it's kind of deceptive to say I was spared the visitation. The truth is, I didn't sleep at all last night, so upset about the FLARE, the Prednisone, and the visitation from DEATH.

I put my bathing suit on at 3:00 this morning, with every intention of driving to swim at 5:30. But when 5:30 came around, I realized I was way too unstable to drive, so I didn't go. Michael said he'll take me tonight and I'm going to go. It's what I HAVE to do, Its ALL I CAN do to fight back, my tiny window of defiance against this disease from Hell.

So I put my suit back on, feeling nauseus like I was about to throw up everything I've ever eaten. I asked Michael to take me to get a salad before swimming, thinking that I just needed a nice glass of Iced Tea and some rabbit food. WRONG. I just got sicker at the restaurant. So we came back home, my entire salad with us in a to-go box. So despite 2 attempts, I didn't make it to the pool today. It's like windows that keep slamming shut, and I hate it. I will try again in the morning.

8 and counting

Dr. Butler lowered my Prednisone to 8 MG/daily on Thursday. It's been a tough go of it since then. Pain is up, Fatigue is up, taking more pain meds, and generally feeling bad. Today I didn't even get out of bed untl 4PM. The pain was so bad and I kept taking meds until I could finally stand to feel the air on my skin. Afater I finally got up, I had migraines and nausea for the rest of the day. So, I don't know about 8 MG, we may have pushed it too far for now. Might have to go back up to 9 or10 mg. I'm going to try my best to stick with this for at least 1 week before throwing in the towel. I had every intention of going swimming today too, but didn't make it. Today was my Methotrexate day too, and I took my injection late in the afternoon. So Sunday may be even more of a challenge than today. Oh well, going back to 8 or 10 mg for awhile won't be the end of the world. We can try to lower it again in a few months. Until then, I'm hanging in here.......

Double Bump

So the foot thing was a bump - then came another bump. My left ear has been bothering me so I finally went to the ENT last Wednesday. He took one look at it and setup outpatient surgery for Friday morning. Seems my tube was sucked down into my middle ear and my eardrum grew back over it all. What a mess. Well fortunately there wasn't any infection in there and he released me for Remicade next week. The Infectious Disease doctor also released me for Remicade next week, so hopefully I'll be back on track soon.

I got my own flippers (since I think I may have got the infection from using the flippers at the Y), and I went swimming yesterday for the first time in 2 weeks. It felt GREAT. I also got these cool socks that you wear with the flippers (who would've ever thought of such a thing?). They were sooo comfortable and keep the flippers from rubbing against my skin. I really liked them.

I am sooooo ready to be healthy again, to be 'normal' again, to say YES when my friends and family ask me to go somewhere fun again. To hold a job again. I wonder if I'll be tethered to an oxygen tank for the rest of my life. I wonder if I'll ever climb Blood Mountain again? If I could, I would go up there with Amanda and stay all night under the stars. That would be heaven on earth.

On another note, I'm begging Michael to find a different job with a rotating schedule, or to work nights or something. I fear I've become such a burden on my Mom and Amanda taking me back and forth to all of these doctor appointments I have. Amanda will be going to college soon, then it will all fall back on Mom, and I hate the thought of it. She doesn't need the stress and expense of coming over here all the time to take me downtown. She needs a break from ME.

On yet another note, I did another one of my 'escapes' last week. It all started while I was trying to put up a wallpaper border in Will's room - I needed both Amanda and Will to help me. As usual, things deteriorated between the two of them. Finally Amanda left. It was really hard to finish it up without her help. I feel like my heart is being ripped out and pulled apart by them. It is so hard when your children seem to hate each other and disrespect each other like that. I could have gone straight to a very negative place. Instead, I packed enough stuff for an overnight trip, filled my oxygen tank, and left. I did do them the courtesy of leaving a note saying I would be back at 5AM the next morning (I had to be back to go for my surgery). I decided I needed a break and I needed to pamper myself, so I did. I checked into a very nice hotel, ordered room service, and watched movies. Every now and then, I thought about my 'problem' and started getting weepy and all, but for the most part I was OK. Maybe it wasn't the best response, but it was a better response than staying home and being emotionally battered all day. When I got home, Will apologized and seemed genuinely worried about where I had gone and if I had been safe. Amanda was mad at me and I think still is. She told me she is 'not to interested' in going on our vacation in August. I told her it's completely up to her, she just needs to let me know today because I have to have time to change things. I can't get refunds at the last minute. I am disappointed, because my kids haven't had a vacation with Mom for 4 YEARS. I was so excited to plan something special for them and to be able to go along with them to enjoy it. I made special invitations for each of them, I really tried to make a big deal of it and to make them feel special. I've decided that if Amanda backs out, I'll just try to get some one else (that can drive) to go with me and Will. I've decided not to let it ruin a special time, even though I'd wanted Amanda to share in it. I'm determined NOT to let it hurt me or wallow in rejection. That's healthy, right?

2 Steps Forward, 1 Step Back

I had 2 pretty good weeks back to back - a record for me, the most "good days" in a row I've had since getting sick. I even got my hair cut - my first haircut in 3 years! It's hard to fathom that I've felt too sick to even get a haircut for 3 years... but its the truth. I really like it short, it's so much cooler and looks so much better. I've also been swimming a lot and LOST weight (16 pounds) for the first time in 3 years, all really good stuff! I saw my Pulmonoligist on Monday and told him I was swimming without any oxygen and he was very concerned. He finally agreed to let me keep swimming, but only for a max of 30 minutes, then I have to put my O2 on 4 liters when I get out of the pool. We took a walk down the hall with no O2 and my sat went to mid-80s' within 30 seconds. I could tell he really isn't comfortable with me swimming and being off O2, but I was about to cry and I think he knew it would just break me if he cut out my swimming out altogether. It was like he read my mind. H looked at me and said "I'm not going to take your lifeline away." Wow, I'm sooo grateful for this doctor. I must have been through a dozen Pulmonologists before finally finding him. He is the first one that really "gets it". He treats me as a whole person, not just as a pair of lungs. He seems truely interested in my case and in the devistating impact that Systemic Sarcoid can have on a person's life. Unfortunately, the damage to my lungs is permanent, it's not like they are going to 'heal', or can be 'fixed' - and I've never even smoked! That means I'll be on O2 until or unless I have a lung transplant at some point. Right now my Sarcoid is stage 3, and hopefully it won't go to stage 4, so I'm looking at O2 on a permanent basis and hoping we don't get to the transplant stage. There is a lot of buzz on the Sarc sites these days about Beryllium Poisioning. It seems that a LOT of people with Sarcoid test positive for Beryllium Poisioning. I asked my doctor to test me and he ordered the blood test that shows whether or not you have been exposed to Beryllium. He said if that is positive, then you have to have a Bronchoscopy to definitavely diagnose toxic levels. He said if I do test positive, my treatment and prognosis won't change, but at least I would know. He said if he were me, he'd want to know too. Now, this is the amazing part. I took the orders to the EMORY lab, and they didn't know how to do the test! They sent me home with the orders in hand and said my Doctor would be in touch with me to tell me where to go get it done!!! Can you imagine - at EMORY!!

Next, on Tuesday I went to my Diabetes Dr. My A1C is down to 7 (Yea!!) and my cholestorol is back in the normal range. Liver and Kidney functions are good too. But then I showed him my foot. It looks "funny" and hurts REALLY BAD to stand or walk. He said it looked like Cellulitis and sent me directly to an Infectious Disease Dr. (Dr. Dailey). Dr. Dailey thinks the infection is not deep and did blood work and sent me to the hospital for x-rays just to make sure I didn't have another fracture (My bones are so compromised at this point that they fracture very easily). I went back today and the x-ray is normal (another Yea!), but the pain is still very bad. He explained what I should watch for, symptoms that would indicate the infection has gone deep into my foot, and put me on a topical cream for 10 days. So, of course I can't get in the pool again until it is all healed up (sounds like a broken record), and I probably can't get my Remicade infusion next week (another broken record). He said it could take several weeks to completely heal. I have a call in to Dr. Butler to find out if I can have Remicade next week.

I suspect I may have got the infection from using the fins at the Y, so I'm going to buy myself a pair of my own before I go back to the pool. I'm going to get some of that pink liquid soap they make you wash with before surgery. Then I'm going to wash my feet with it every time I go to the Y after I swim.... Maybe with those changes I'll be able to avoid a repeat of this infection. I'm also going to get a new gym bag that rolls, because right now I have to have some one go with me to carry it. I can carry it into the Y (just barely), but after I swim, I can't carry it back out, unless I leave the Oxygen tank out of the bag because I'm too weak.

Yesterday was pretty tough, it seems just when I'm starting to show improvements, there are setbacks. Plus I ran out of oxygen while we were running between doctors offices, pharmacy, and the hospital. I was off oxygen for at least 3 hours in 90+ degree heat, and that didn't help matters. I had only planned to go to 1 quick appointment and hadn't taken enough O2 to last all day. When we finally got home, I was too weak to go upstairs; I just collapsed on the recliner, took a healthy dose of pain pills, put my oxygen on, and went to sleep.
Amanda spent the whole day driving me around and had to miss some things she had planned to do. She is such a sweetheart, she's so patient about taking care of me. I was glad that we got home in time for her to do her normal Tuesday night activities at least. When Michael came home, he let me cry while he put the medicine on my foot and then made the most wonderful smoothies. We sat and sipped and talked, and he really helped me calm down from everything and lifted my spirits.

2 Down and 1 to Go

Today I had my 2nd epidural to attempt to stop the back pain I've been suffering from for the last 2 months. I've had buldging discs at L4/L5 and L5/S1 for nearly 20 years. Over the years, I've been blessed to avoid surgery by having epidurals, which have so far been successful. Now the doc says my L4/L5 vertabrae are "bone on bone" and the prognosis of the epidurals is not so good. But I'm hanging onto hope. The first treatment helped some - I'd say about 25% improvement. This treatment was done at a different facility (much better in my opinion), and I can already feel the improvement. I'm VERY hopeful for a positive outcome. I have an appointment already setup for my 3rd shot in 4 weeks at the same center. I really believe that after the 3rd shot I'll be much better and able to get around again. I learned a lesson about my oxygen - I've been leaving it at home if I "feel ok" and "think I can get by". When I got to the center, my o2 sat was 78%! They got me on oxygen right away. I hate it, but I just have to start being more consistant with it. When my back started hurting so bad, I sort of started getting lax because the weight of carrying it made my back hurt even more. But I can't go around with 78% sat (anything below 94% is considered low) !

We couldn't work out any arrangements for Will this morning, so he had to go to the Pain Clinic with us. It wasn't too bad, because as soon as I went back, Michael and Will went to McDonalds for breakfast. Shortly after they got back to the center, I was released. So Will didn't have too much time to climb the walls. I was hungry, so we took a quick stop by Waffle House for some comfort food - Cheese Eggs and Grits - for me. At the clinic, they gave me a 'feel good' shot to help me relax during the procedure, so I came home and slept until about 2PM. After that, I was up and around and had much less back pain than I've been having - I really think this doctor hit the right nerve! I got a package together for John and wrote him a letter and Michael took it to the Post Office for me.

Michael worked so hard cleaning the garage and washing John's car, and Will helped out. In the evening, they cleaned up and went to a Scout meeting where Will passed off some of his physical fitness activities. They came home with an extra boy - one of Will's friends came over to spend the night. Now the boys have had pizza and are downstairs playing pool, and Michael and I are upstairs getting ready to call it a day. There are plans to go to see fireworks at Wills park tomorrow night - Michael and Will always go. Then on Thursday they plan to go North for a guys-only trout fishing & camping trip. I love fresh trout. YUMMMM.

Prednisone, Horns, and Popping Discs

Today was my monthly checkup with Dr. Butler. The GREAT news is that I'm going down again on my Prednisone from 12.5 mg to 10 mg starting tomorrow. The other GREAT news is that she is prescribing a brand new treatment for me to try that DOES NOT INVOLVE DRUGS!! It's something that has just recently been approved by the FDA; some sort of gadget that goes on your knees and hands while you sleep and sends electricity into the joints. Dr. Butler said it sounds wacky, but she knows the researchers that developed it and has high regard for them. During the trials, they were able to demonstrate through verifiable tests that this treatment actually reduces the inflammatory tissue in the joints by significant amounts. I'm eager to get started. I'll have to be fitted for the 'gadgets', and I'm sure Dr. Butler will have to write a justification to get my insurance company to fork over the $$ for it. I just wish I could remember what it's called!

Another good peice of news is that the skin on my back has finally healed, so I can go back to the pool. Since the pool is the only type of exercise I'm allowed to do, this really means a lot to me. I've gained so much weight on this nasty Prednisone over the last 3 years that I desperately want to lose. Even if I can only last 20 minutes in the pool, it's at least a MENTAL victory for me.

My back is another story. My L5/S1 vertabrae are "bone on bone", according to my doc. I am in excruciating pain most of the time, even though I take 60 mg of oxycontin every day and 6 Vicoden for breakthrough. It was so bad yesterday that I cried during my entire appointment with Dr. Becker. The doc says I really need surgery, but because of my health conditions I am NOT a good candidate for it. We are doing a series of 3 epidurals and praying for a good outcome. I've had 2 buldging discs for nearly 20 years now, and have had several rounds of epidurals that have been succesful. The difference now is I'm older, I have Osteoporosis (from the Prednisone), I'm Diabetic (from the Prednisone), and WAAAAAY overweight (from the Prednisone), plus the disc is in really bad shape. Honestly, I don't think I can face anymore surgery, I am afraid I couldn't make it through. So this is something I'm praying about a lot these days. Every now and then I get a few minutes when the pain dies down to a dull roar, like right now, and I can write to my blog or something sedentary. I'm pretty useless around the house; I can't stand up long enough to load the dishwasher, much less prepare a meal! We're all trying to pitch in and make the best of it, but after weeks on end staring at a dirty house and being unable to reach, bend, scrub, or anything, it gets pretty depressing.

I also saw my Opthomologist today. I have to see him every 6 months because of my Sarcoidosis and Diabetes. Everything looked pretty good, except my dry eyes are getting worse. I promised to start using the artificial tears like I'm supposed to do. He said if it doesn't improve, they can put little plugs in my tear ducts to help my eyes retain moisture. Now thats something I've never heard of....I learn something new every day!

Oh and one more update from last week - the Dermotologist says the lump on my forhead is a "bony cyst", and is harmless, and basically I just have to live with it. Ok by me - at least it's painless. I think all these weird bumps on my head and shins are from the Sarcoidosis, personally, but heck I don't have the Medical Degree, I'm just a humble Mathematician. On the other hand, maybe Mom is right and I'm sprouting "Prednisone Horns". It might actually be good if Prednisone gave you horns because they might warn the people around you about how nasty and volitile you've become on the inside from that poison.
So let's see, that updates the Rheumitoid Arthritis, Degenerative Disc, and Eyes and strange growing bumps. I won't see my Pulmonologist again until next month to get an update on how my lungs are doing. At my last visit he told me my disease (Sarcoidosis) had progressed to Stage 3 (ugh). The latest statistic I've seen on Sarcoid is that 5% of people who have it die from it. It's a far cry from what they told me in the beginning - and it's appalling how uneducated the medical profession is on the insidious nature of Sarcoidosis when it is systemic.

On the caution side, I fear I may have another ear infection. I'll be calling Dr. Levin tomorrow to take a look at it. If I do have one, it puts next weeks chemotherapy (Remicade) at risk, and I don't want that!

Like Gilda Radner said, "It's always something"..... In my case it's always something, if its not a disc popping out, its horns growing from your forehead.... (If you watched Saturday Night Live in the 70's you'll get that).

Well thats about all I can stand, so I'm off to take some pain pills and try to get some sleep. ZZZZZZZzzzzzzzzzzzzzzzzzzzzzzzzz.

Not So Great Today

I had a few really good days last week, but now it's not so great. I have a migraine and my joints are all revolting at once. They feel like they are all on fire and burning out through my skin. I didn't sleep much at all last night because of migraines and joint pain. I've taken my Max MLT which works great, but leaves me with nausea and a wiped out feeling afterwards. I've taken my breakthrough pain meds but they haven't worked yet. The good news is that today I go for my Remicade, and Dr. Butler changed my prescription from every 6 weeks to every 4 weeks, so I'll be getting more of it. I'm also up to .8 on MTX every week. I really do think all of this is working, it's just very slow and there are still many tough days, like today. The weather doesn't help. Whenever storms are around, it makes my joints hurt. Dr. Butler says it's because the fluid inside my synovial joint space (which isn't supposed to be there) responds to the changes in barometric pressure, and that causes the pain. OUCH!

Amanda graduates on May 26 and there is so much to be done!

I need strength!

I need good days.

ACCEPTANCE

I used to read "acceptance is the key to recovery", several times a week. That was a long time ago, and many demons ago. Of all the demons I've encountered, I never considered Pride to be a significant one, never really thought of myself as prideful, but could always so easily point it out in others. Isn't that the way it is with all of us?

Some things I have to learn over and over. I have resisted help available to me. I have not followed doctor's orders. Why? PRIDE. Pure and simple, that's it in a nutshell. What will people think of me? Will my children be embarrassed to be seen with me? How can I stand to see those 'looks' from people - you know the looks - surprise, shock, disgust, pity, judgement, fear, all those things you see in people's eyes when they look at you. When they see your illness and it's trappings. When they compare the 'old' me to the 'new' me in their minds. My PRIDE would not let me ACCEPT the help available to me because of these things - these FEARS, all of them in my own head. Did I actually think that by resisting help I could pass myself off as 'normal', 'healthy', 'the same old Jeannie?'. I guess somewhere, somehow my mind worked that way. I have been conducting an amazing act of self-deception.

I got over it this week. I started doing 2 things to take care of myself, and in the process gulped down a big, bitter dose of PRIDE.

First, I'm using my oxygen 24 x 7 now. The doctor prescribed it for night time use a couple of years ago, then increased it to 24 x 7 a few months ago. Now I know they don't prescribe the stuff unless you really NEED it, but feeling self-concious about going around in public with a canula and oxygen tank, I resisted using it except in the privacy of home. This week, I started taking it along everywhere I go. It makes a huge difference in how I feel and how much I can do in a day. No big surprise, right, since every cell of my body needs oxygen all the time and my lungs only produce about 50% of what my body needs. Every time I have a Pulmonary Function Test, the results keep getting worse. I NEED the oxygen, and now I'm ACCEPTING it. My body quietly thanks me every time I use it, as if to say "finally, you are taking care of me - what a relief!".

The second thing is riding the scooter in Wal-Mart. For the last 2 years, any trip to the grocery store or Wal-Mart has been very difficult for me. I don't even consider going to the mall. Michael does all of the grocery shopping for this reason. This week, Amanda needed to shop for a weekend retreat. I went with her and rode the scooter. I asked her if she was embarrassed and she said 'of course not!'. The amazing thing is this: I had the first 'fun' shopping outing with my daughter in 2 years! No kidding. Because of my PRIDE, we have missed out on 2 years of fun trips to Wal-Mart. What a waste! Shopping has been so painful and gets worse every month. The pain was so bad that I would either turn into the worlds biggest grouch and lash out at those around me (on a bad day), or just clam up and rush through and go straight to bed afterwards (on a good day). So now I can go to Wal-Mart with my family and ENJOY being with them again. Riding the scooter felt like being let out of prison, just cruising down the aisles, taking my time looking for things, not rushing, or looking for a place to sit, just enjoying the time with my daughter. And I didn't have to pop a couple of Vicoden before and after the trip.... Yeah!

Sometimes its good to get back to the basics. I'm going to be focusing on Acceptance for awhile.