Saturday, March 20, 2010

Salish Lodge, Snoqualamie Falls, WA

DH and I decided to get away from it all, and went towards Seattle on Thursday Night so that we would be that much closer to my appointments on Friday. We were alone, no kids, no TV, just us...and the breathtaking view of Snoqualamie Falls from our destination Salish Lodge, where we stayed, alone, without any kids (or did I already say that?). We had a wonderful, marvelous, relaxing time. My only regret is that we could only stay one night. It is quite expensive, but well worth it (once in a blue moon). If you can't stay the night, at least park and walk over to see Snoqualamie Falls. It is gorgeous! Take a peek at our little vacation by watching my video...

Seattle Business and Pleasure

Yesterday I finished out my week of appointments with two more...in Seattle. First stop, Lynwood Virginia Mason to see my orthopedist about my knee. He said it was too early to do more syn visc injections. I fell TWICE before my 10 o'clock appointment because my knee caught, even though I was wearing a brace on both knees. Thank GOD dh was there to catch me! So, doc gave me a cortisone shot and said if it isn't better in 2 weeks to call him back because if my knee is catching a part of it may have broken off. NICE! So now my knee is swollen and even more sore fron the shot. I just hope it works, otherwise I may end up uwing a cane and I don't want that. We had a good 3 hour break between appointments and went to the Seattle Waterfront for lunch. It was a beautiful sunny, warm afternoon! We ate at Red Robin by a window with a gorgeous view of the bay and the mountains! We tried their new burger that had mushrooms sauteed in horseradish, with onions and dijon mustard on an onion roll. It sounds awful, but you couldn't taste the horshradish, and the mustard was mild, it was pretty good actually. I would try it again. It did leave a warm sensation in your mouth though. Dh could only find a parking place 3 blocks away from the restaurant (and that was a handicapped spot). So we took it very slow going to the car (he had dropped me off while he parked so I didn't have to walk so far, what a guy). As we walked down the boardwalk, he asked me, "What was the name of that little shop we used to go to that had all those weird things in it?" "Ye old curiosity shop?" I asked. We looked around and it seemed to have vanished...until we saw a sign that said PIRATES PLUNDER IMPORTS in the same spot where Ye Old Curiosity Shop used to be. It was incredible! It was still on the waterfront, but it was in this little alcove along with a vidoe arcade, restaurant and carousel. When we entered the alcove, we were greeted by some old prospectors and a PIRATE! I thought I had died and went to HEAVEN! I love pirates (I'm sure that has nothing to do with Jack Sparrow) and I am a pirate princess after all. This shop had everything Pirate and much more! If you don't have the opportunity to go to Seattle, visit them at www.piratesplunder.com It is definately worth the trip! Now it was time to go back to Virginia Mason Downtown Seattle to see my gastroenterologist about my stomache. My Yakima doctor thought I might have a hernia. He discussed it with a surgeon in Yakima and they decided that if it was a hernia, that they wouldn't do anything about it because SOMEDAY IT MAY CAUSE ANOTHER HERNIA. I'm not worried about someday! I'm worried about today! It hurts to sit up, bend over and now it is starting to hurt when I eat. When I eat I get a sharp burning pain in my stomach and I feel nauseous. By the time I got into a room to be seen I was in tears, from the pain in my knee and stomach and I was worried that he would blow me off like everyone else. I have had pain before, but it used to be underneath my right ribs and I finally decided that it must be from the fibromyalgia. So I hadn't seen this gastro doc for a couple years. Now I have a new, different type of pain in a different location. He LISTENED to me. He SYMPATHISZED with me. He BRAINSTORMED a list of ideas. I LOVE THIS GUY! He said that it made sense that my iron, calcium and vitamin D were low because I had a gastric bypass and all three things are linked together! He also thought I may have an ulcer. He said that with one kidney he was very worried about me taking too much ibuprofen. FINALLY, my HERO! Someone who puts it all together! He ordered blood work, and said he would call my Yakima doc and discuss it with him, and discuss getting me on something other than Ibuprofen to save my kidney and liver! He started me on RX strength Prilosec and ordered an upper endoscopy to make sure I didn't have any ulcers! WOW! I knew I liked VM for a reason! These guys really look at the big picture! I am so relieved! I'm almost giddy! He also suggested that I see a rheumotologist about my arthritis, since me knees are deteriorating and my spine is deteriorating. I've shrunk one inch already! Scary! Why didn't someone else suggest that? So, I left with hope, of feeling a little better...I waited 6 weeks to see him and have to wait 4 more for the endoscopy, but I have hope that he will find an answer and help me! That's better than, go home, wait, come back in 6 months if the problem isn't any better! PRAISE THE LORD! I went back home, still in pain, but full of hope!

Friday, March 19, 2010

Pain

OK, I have pain and a lot of it. Doctors seem to want us to choose on a scale from 0 to 10, exactly how bad our pain is. They usually have a little smiley chart to help you decide. I know this chart by heart. I have been to a 10 (the worst) and beyond a 10, but usually I am about a 6-8. It is hard to determine when each part of your body hurts worse at different times of the day.

I did get a tens unit from my physical therapist. A tens unit is a little machine about the size of an old fashioned walkman. You clip it onto your pants and then there are 2 leads that come out of it that you attach to your pain points. I was told that this is best for muscle pain, and you can adjust it several different ways and move the leads on your body to different parts of your body depending on where your pain is the worst. I have had it two weeks and have already gone through 2 batteries. It helps and I am using it a lot. The PT said that I couldn't use it too much, which is good 'cause I use it a lot!

I have also started physical therapy. THAT CAUSED MY EXHAUSTION, or so I believe. I have gone 4 times and now in the second week I can hardly get out of bed, I am so tired. I haven't even gone to scrap! OR want to watch a movie! These are two of my favorite activities and I'm too tired to do them! I don't like feeling like this!

For Valentine's Day, my mom bought me a book called Dealing with Pain or something like that. It was written by a local Yakimaniac, and surprisingly my first early education teacher I had at college! It was cool to be reading something that someone you know actually wrote! Unfortunately, it wasn't that great. The writing was clear, honest and you could tell that it was difficult for her to write. She offered several suggestions about dealing with PAIN, but most of them weren't practical for me. She did say that no matter what it takes, you should always try to go somewhere comfortably (she brought pillows with her everywhere). I agree with that one! I already did that though...

She recommended water therapy, massage, a jacuzzi tub, temperpedic foam mattresses, specialized and comfy chairs, and computer programs that would dictate your words as you spoke them. Well, I can't afford the computer program, weekly massages, special foam mattresses, specialty chairs or water walking. I have 5 kids! So that was not very helpful. Mind you, if I had the money, I would definitely try those, but it is clearly not in my current budget.

Then she talked a lot about meditation, keeping your mind sharp, and making sure that you have a special advocate (an angel) to be your spokesperson, especially when you have a bad week (like I'm having). I thought that I read that she had found out that pain affects our brains adversely, and can eventually make us lose memory and become quite forgetful. My sister argued that it was probably pain meds causing the memory loss, but I am pretty sure she said it was pain itself. I will do more research on this and get back to you. I did find that there is something called Fibro Fog which is when you start to lose memory from the Fibromyalgia. It was explained that the lack of sleep from insomnia caused this condition. Well, lack of sleep causes more pain too, so it's possible that there is a little truth to it all (pain meds, lack of sleep and pain itself).

In attempt to manage MY PAIN, I have started physical therapy, got a tens unit, and am taking Tramadol for pain in addition to Alleve and Extra Strength Tylenol. Come on! Isn't there just one thing that will help, rather than 4? Guess not! The research I have found states that although doctors are now diagnosing fibromyalgia, they don't know how to cure it, so they can only treat the symptoms. Great!


I will keep scouring the net for more info to share. Oh, I did find that capsacin helps a lot! Unfortunately it is made out of a pepper and although my aches went away temporarily, the pepper stayed in my system to the point I could not wear my contacts, they burned my eyes. If you do not wear contacts, try it out. There are several different types of fibro/arthritis pain relievers out with capsacin in them. Try different things until you figure out what works for you (and it may change from day to day). I will get back to you when I find out something new...until then, stay happy and healthy my friends....

Fibromyalgia and Me....

OK, this must have been a bad Fibro week for me. I have just been totally exhausted, to the point I can hardly get out of bed. I have made it to 5 doctor appointments and I have two more tomorrow. Today I went back to my hematologist to see if I was still low in iron, because last week they didn't finish my entire iron infusion. He said that my count was up, so there was nothing he could do. He sent me home with the advice, "Try and eat healthier." That's a lot of help.

So I did some research on the Internet. I typed in WebMD and then typed in exhaustion and you know what came up? Fibromyalgia! I knew it made me feel like I had the flu and I knew it made me have insomnia (thus my blog at 2:45 a.m.), but I didn't know it caused exhaustion, probably because I am not thinking clearly which incidentally is called FIBRO FOG! Wow, learned something new today! It makes sense now that I think about it, not enough sleep makes you tired, BUT I have been in bed at 6pm all week! So I shouldn't be exhausted, except that it also causes sleep apnea, which makes you not get into the good, REM sleep your body needs. So, if you are exhausted it may just be your fibro. DH, bless his heart, took me to Salish Lodge near Snoqualamie Falls tonight, for rest and relaxation. No kids, no tv, just us, and the soothing roar of the waterfall outside our door. AHHH, I feel relaxed, but I still can't sleep! The doctor put me on Trazadone, to help me sleep, but unless I am laying still it doesn't make me go to sleep. I guess typing isn't still enough because I'm still awake. I have been diagnosed with sleep apnea before, and restless leg syndrome so it's hard to say which came first (those or the fibro). I thought I was over the apnea, but maybe I'm not. I need to go and do another sleep study to find out for sure. I'm waiting for my new doctor to schedule that (it's been 6 weeks and so far, he hasn't, I bet he forgot). If you are reading this in the middle of the night, turn off your computer and try to rest. It will do you wonders! So sweet dreams and sleep with the angels my friends....

Monday, March 8, 2010

March Madness

March has already been filled with appointment after appointment and they are not ending up any better than February I am afraid.

Dentist: 1 appt. - I got a call the morning before my appointment to fix my last 6 fillings. The secretary informed me that I had already maxed out my dental coverage for the year. I needed to pay $980 the next day to get them fixed. I did not have that kind of money, so I decided to just get one fixed, Even though they all hurt. While in there, the dentist told me that my poor teeth had decayed even
more! Luckily he did not charge me to fix the other decay he found when fixing the one lowly tooth he fixed. Since there was more decay, the price of fixing the other teeth went up! I am hoping to get the rest fixed when our income tax comes in.


Iron Infusion: 1 appt. - this took another 7 hours for a 4 hour infusion! This time it was only 3 IV's, but I got another allergic reaction to the iron, despite more premeds. At 4 in the afternoon, my arm started to get hives, and the nurse said, that's it, you are done. Go home. I still had 2 hours to go on my infusion, but she said that I had already had too much counteracting meds and that we were going to stop. She didn't even consult a doctor first! Oh, and she was really mad at me because TWICE the IV came out, again! The first time I was in the bathroom and I went to go wash and my hand was already wet. I looked down and there was blood all over the floor. I felt so bad, because I left a blood trail from the bathroom to the nurses station and then back to my chair. The second time I was just sitting there and it slipped out. The IV machine started to beep (occlusion) and I tried to push the IV back in, but it didn't work. The nurse got mad at me again! She said, "What the hell is going on? IV's don't just fall out!" She looked at me accusingly, like I was pulling them out myself or something! I was so glad to get out of there! Besides, after the infusion I had to take my son's friend back to Seattle. What a long day that was! I didn't get back home until 11:30 that night!

Physical Therapy: 2 appointments - I got a tens unit which I love! Except that my second lead quit working and my PT left for vacation, so I've had a week without 4 leads. Two is better than none though. He gave me just a few exercises to do at home. Moving my neck side to side, up and down and shoulder to shoulder. Pelvic tilts to strengthen my lower back and gently bending my knees side to side and shrugging my shoulders up and down. Oh my gosh! I can't believe how much it hurt to do such little exercise! It was embarrassing to think how weak and sore my muscles were. He said that my nerves were super hypersensitive and now we are working on desensitizing them. He was gone all last week, so I start up again today. Hopefully I will have made a little progress.

Today starts another marathon of doctor appointments. This week I have physical therapy twice,a DMSO treatment once, and then to Seattle for my stomach and knees. Yesterday the girls started soccer practice. So I have something going on everyday! How exhausting! I spent most of Monday in bed, exhausted from our trip to Spokane Saturday and Sunday. I feel a little better today, but I haven't gotten out of bed yet. That's when the pain starts, when I get out of bed! Lately, I've been getting tired, just showering. I really hate that! You wouldn't think that would be difficult but it is. Everything I do takes so much more time now, and the rest of the world isn't slowing down for me, so it is very frustrating! Come back soon to see what else is happening in my world. Shellie

Wednesday, March 3, 2010

February Highlights

Sorry I haven't posted in a while, I have been so busy! February was a crazy,busy month! I was at a doctor appointment for me and/or one of the kids 5 times a week, every week! I didn't get a lot done at home, or online, obviously. To make matters worse, I also didn't get a lot of answers. Here is a breakdown of the specialists...

Dentist: twice to fix 9 deteriorating teeth

Urologist: five times to begin DMSO treatments for interstitial cystitis. I had a bladder infection the second week of treatment and so I only got 2 of my six treatments in February. These treatments are weekly for six weeks. I have four more treatments in March (IF I don't get another infection)

Family Doctor: Two Visits. The first visit he said he thought I had a hernia and that he didn't think we should worry about it, until I got my foot fixed. Then he said, come back in 6 months for a physical, unless you think you need to come in sooner. I am so sick and tired of being in pain, and decided that if fixing the hernia would take away some pain, I should get it fixed, besides it hurts when I sit up or bend over. So I called him back and told him that I wanted to get it fixed. He referred me to a surgeon and I had an appointment to see him at the end of He month. Two weeks later I got a call from my doctor and he said that he had talked with surgeon about my "HERNIA" and together they decided that it was NOT a good idea to fix it because SOMEDAY it may develop into another hernia. I reminded him that because of it's location it hurt to sit or bend over. He apologized and admitted that he really couldn't help me. GREAT! Keep taking ibuprofen and extra strength Tylenol for pain he said. He also said that if it still bothered me in four months, then maybe I should go see the surgeon. He also said that if I exercised it MIGHT go away. How can I exercise when it hurts to walk and my knee catches and I'm dizzy and my back and neck hurt so. He didn't know. He suggested swimming or a stationary bike. I can't afford to go to the pool when I have to pay a $30 copay every day at the doctor! I also can't afford a stationary bike! So that wasn't very helpful either.

Surgeon: 1 visit: He did agree to see me, despite his conversation with my family doctor. My mom said she knew him very well so I asked her to come along thinking that maybe he would take pity on me and help me since he was a friend of my mom. Well, he appeared kinda ill (scratchy throat, not particularly friendly) and he didn't recognize my mom, so that plan backfired! He examined me and said that he couldn't definitely say if I had a hernia or not, so I should wait 3-4 months and see if the pain goes away. THEN he would send me for a CAT scan to find out exactly what it was. I told him that I was severely anemic and that they did not know the source of it. He said, then you'd better not take Ibuprofen (contradiction of family doc). He had no other recommendations other than to wait, wait, and wait some more.

Hematologist: 3 times: 1st visit was to check my blood for anemia. He said that my levels were a little low, but his computer wasn't working and he couldn't compare it with my previous tests to see how low. I told him I've been tired, dizzy, bruising easily and then asked him about calcium and vitamin infusions. I was told by another doctor that they could do infusions. Since my teeth are decaying and my darn toe keeps breaking I thought that a calcium infusion might boost up my levels and help promote bone growth. He said someone should be following my vitamin levels and then he said, I don't know if it should be me or your family doctor. DUH, he is the blood specialist, and I am in HIS OFFICE, so I guess it should be him. He ordered lots of blood work and then said he would see me back in a couple weeks to discuss them. I went to the vampires and they took 12 vials of blood! I was even more dizzy after that! When I went back, the doctor said that the results showed I was severely anemic, and had way too low of levels of calcium and Vitamin D. Then he said, you are way too young to have such low levels of calcium and vitamin D, if you don't take care of this you will have some real problems! (HA, if he only knew all of my problems, what else could go wrong? I don't even want to think about that) So he signed me up for iron infusions that would last 3 1/2 hours. RIGHT! Try 7 hours! When I went for my first infusion it did not go so well. I am hard to start an IV and so they have to do it in my hand which HURTS. The first IV was between my pinky and ring finger on my left hand. Shortly after the IV started my hand felt wet. I looked down and the IV had slipped out of my vein and iron and blood were all over my book. I rang the bell for assistance and they came running over to fix it. It would be 4 hours after the IV started before I would be done. A new nurse came over after several attempts, she finally got a new IV started in my right hand. It burns I said, so she said, it's just because of the location, here, use this hot pack. Several minutes later I was in so much pain I thought I would cry. I removed the hot pack and found a huge lump in my hand where the IV was. The IV slipped out of the vein and was going underneath my skin! I rang the bell again, and they removed that IV and put more hot packs on the area. Then another nurse came in to try for another start. She asked another nurse to try. By the time they were done it had taken 10 tries (throughout the day) to get one IV to work. It finally ended up in my left forearm. Before the iron infusion the premedicated me with prevacid and bendadryl in case of an allergic reaction. The infusion should have been 4 hours (not the originally quoted 3 1/2 because they used a different type of iron that is slower) and so the benadryl should have lasted 4 hours. Well with all of the IV problems I was there a lot longer than 4 hours! So later in the afternoon, I had an allergic reaction. So they stopped the IV, administered benadryl and prevacid, and then restared the IV. What a fun day! To think, I get to do it again in March! Woo Hoo!

Pain Specialist: 1 visit: This was ridiculous. He came in, and asked how my meds were doing. I said fine, I guess, I am still in pain and when I sit down the burning sensation in my neck is worse. Then I asked him about a tens unit. I said I know you want to do a spinal chord stimulator after my foot is fixed, but what about now? Wouldn't a tens unit work? He said that a tens unit was for muscles, not nerves and with my fibromyalgia it might help. He said let me set you up with a physical therapist and have them teach you about a tens unit and also do some deep ultrasound massage. Then he left to write the prescriptions and I didn't see him again. The visit was less than 5 minutes! The nurse brought me in the scripts and referral. Give me a break! That was not worth $30.

Phone call from Physical Therapist: Once: They called to set up my appointments. They said that the doctor recommended 2-3 visits a WEEK at $30 per visit according to my insurance. Then they said that a tens unit would be 20% out of pocket and that they usually cost around $800! I was in shock! I can't afford to buy all the vitamins I need, let alone go to PT 3 times a week for $90! I told them that I would go one time and see how it goes. That visit is in March, so we will see what happens. I definitely want to try the tens unit. So I may have to go a few times, just to get it. Come back soon, to find out what happens...

There you have it 14 doctor appointments for ME in February! The rest of the visits were for the kids. Asthma, athletes foot, shots...maintenance mostly, but also time consuming! I'm working on a year long scrapbook project called Project 12. Each month you do one layout that highlights that month. My theme for February is Doctor Appointments! Thanks for taking the time to read through this dramatic episode of my life. It is my goal to write more frequently next month. I have been putting off writing because it makes me depressed when I go back and realize all the crap that has taken place, but now I'm looking at is as a therapeutic and creative release, so maybe it will make me feel a little better rather than worse. Come back soon to find out how I'm doing. Have a super day! Shellie