It was a beautiful day today. The sun was shining and there was a breeze blowing. I think it got up to about 78°. We went to Lowe’s and bought eight bags of hardwood mulch for the yard and flowerbeds . I bought two plants to put in the front flower bed. All I could do was get one plant planted in the corner and the second plant planted in the middle of the flower bed. Then the day went to junk. That but of exertion blew up my blood pressure and heart rate to the point that I had to come inside and lay down for over an hour, take more medicine and was so disheartening. I love gardening there’s nothing I enjoy more from Easter into the fall than working in my yard with flowers and dirt, except golf would come in there as number two . Right now I can’t do either one . I’m trying my best to keep a “stiff upper lip”, as the British say . But it’s about to get on my last nerve! I have to find a way to get back to normal life . I’m sick of being sick! I’ve been praying every day like I normally do. I have changed my diet. I would love to exercise but I’m just not able to get any exercise aerobically which I am sorely missing. All of this is lost because of this mysterious disease process that’s going on right now. I know there are people worse off than me, so some people would say you just need to be thankful for what you have. And I am thankful for everything that I have! It’s just that right now this is very personal and I’m not the most patient person in the world… and I’m not the best patient in the world either. 🙍 Not only that but once again I am swelling every day. I had to pry my rings off today. The other day when I went to the doctor I had gained 7 pounds in the span of about a week. And I have pitting edema and both of my legs right now. My face is very swollen too and I hardly recognize myself sometimes when I look in the mirror. Overweight has always weighed heavy on my head and my heart . I don’t do well with it and it’s making it harder for me to feel like doing anything outside the house. I know that sounds very shallow . On the other hand on Thursday I got a good report from the cardiologist to basically cut me loose. She said that all of my cardiac test are normal except for my atrial fibrillation so as far as they were concerned I was clean as a whistle . She said this whatever ?? is metabolic and continue to go to the endocrinologist . But to change the picture… Brett is in there working on the computer, the dogs are all gathered around and as far as I know all my children are happy and healthy, my grandchildren are happy and healthy and my parents are too. So I have so much to be thankful for I’m overwhelmed! Okay I’ll stop this pity party now and tomorrow is another day. Maybe I’ll get some mulch in the beds then! Peace and blessings to all…
It’s a yucky kind of gray rainy day in West Tennessee and so it’s been slow moving for everybody I’ve talked to today. Sorry I was MIA for a couple days. My appointment with the doctor yesterday went good but questionable … We saw Dr. Latif who I really liked. He’s nice and seems very compassionate. However, the MIBG scan was negative which is kind of what I expected . He said sometimes this could take 8 to 10 years to sort out … Yes I said years. It was a relief to hear that I didn’t show a pheochromocytoma ! But it sent us back to the drawing board as far as he was concerned and as far as our searching goes..sigh. It’s not an easy thing to track down and I knew that from all of my research . I couldn’t help but cry just a little because I was really hoping for something like a benign Pheo that could be removed and I could get my life back quick. No such luck. We started a new medicine called Cardura which is an alpha blocker, on top of the other five blood pressure medicines that I’m on right now! So I’m spending yesterday and today trying to get used to the new medicine and I think I feel a little bit better today . Of course I haven’t really done much I’m trying to follow the directions on how to get used to an alpha blocker . It blocks the infusion of epinephrine and norepinephrine into your system and helps to keep you from getting the “fight or flight” response in your body. The dogs smell it of course rescue one has taken turn passing by me sniffing the new chemical smell on mom . They’re adjusting to it, amazing how they know! I’m not sure how but their noses are so developed it’s incredible they sniff me from high to low as soon as I come back in from the doctors office every time . The med causes a little dizziness. Yesterday was worse than today and Layla has been close by just to be sure I don’t fall flat on my face . So far it’s not keeping my heart rate below 100 consistently but it hasn’t blasted up to above 120 bpm all day long which is a new development. The biggest problem with all these blocking drugs is that they also block your desire to participate in life, lol. Being the terrible patient that I usually a.m. I have made the executive decision to start and withdraw one medication at a time based on my vital signs. Since I have the ability to monitor both my heart rate and blood pressure and the way I feel internally and how are Espanto things that I’m doing I’m going to try over the next few weeks to knock off one at a time and see if I can get some life juices flowing again . I’ll let you know how it goes it should prove to be interesting! Of course he told me that sometimes these things have triggers… so I should avoid as many carbohydrates as possible. That means try to go on a high-protein diet. This leaves out pretty much most of the things that I like to eat. Luckily I had already started lowering carbohydrates back at the beginning of the year before I got sick and pumping up the protein and fruits and vegetables then so it won’t be a horrible conversion but Rome wasn’t built in a day . Some people really feel it when I eat certain foods..that trigger point I don’t get that. I get a trigger whenever I try to do something physical like swing a golf club or slide the mop around the floor or get on the treadmill or take the dogs out or take a bath…. just pretty much anything that most of us do in regular life. I will say I’m hopeful for controlling the symptoms . He said that he would see me again in six weeks and I have to have the 24 hour urine lab done in four weeks to see if it’s still as elevated as it has been the last three times. He mentioned that we will probably do what’s called an octreotide scan if I’m still having symptoms. It’s a scan that is has radioactive dye tagged with a hormone that’s specific to some of these types of tumors and can find them in lieu of the other scans. They use it when the go to scan is negative, since with all tests there are about 10% or more false negatives.
I have the best husband in the world! Brett is so patient and loving. He went yesterday and bought groceries so that we would have all the correct foods. He’s taking care of everything around the house like he has been since January as best as can. I just thank God for him. He’s such a wonderful man and such a beautiful and loving mate. Without him and the dogs life around here would be pretty solemn. I’m also extremely thankful for my beautiful family, especially my sister. And friends like Kathleen, who keeps up with me no matter that I go silent from time to time.
I don’t know if anybody else’s this way but when I’m processing things I’m not the most communicative person in the world. It’s difficult for me to text back and it’s agonizing for me to try to pick up the telephone and call somebody back. I can’t make myself! I find myself just crawling in my shell and have to think for a while! Course the dog babies sense this and try to entertain and cajole the whole day. Annabelle has been bringing me her ball to throw up and down, up and down… all day long. Wooby and JojoHave had several Jack rat terrier wrestling matches in the middle of the floor just for entertainment value if nothing else. Layla has been hippity-hop, big old girl that she is, jumping up and down, following me everywhere smiling that big black playful Lab face. She even started a play towel fight with me earlier when I tried to dry her off after coming in out of the rain . Lyza Jane has done the Chihuahua yip of and on all day just to keep out snappy (pun intended). sweet yellow lab Chase has come over for petting and loving. He has to lick you under your chin just to let you know he loves you and Buddy the most frightened of all, but also the most loyal at times, has given up his spot on the couch just so that mom can lay down . So I’m surrounded by love and I can’t think of a better place to be and the day has been better than the days before so I’m thankful . Now we’re settling into the evening time watching a little bit of tube. They’re all finding their spots around the house where they know it’s time to slow the clock down and get some rest . I’ll keep you posted on this journey. God has provided as I knew he would and I feel encouraged . I hope this account of the journey helps somebody else, because there are a lot of people out there dealing with things … disease in their body or in their lives. It’s good to know that you always come out on the other side. You might not have all the answers but you do come out on the other side as long as you have faith . Peace and love to all!
Solid facts: 1) South is about 10-15 years behind medicine for the most part (being kind) and 2) if you’re going to have a test for something exotic you should do your homework.
The endocrine doctor ordered an MIBG scan because he really felt it was the best procedure and diagnostic test for what’s going on. I’ve had to fight the schedulers to get it. I’ve talked to the radiologist to get it approved because of my Iodine allergy, researched the test and which of my medicines to stop. Radiology stopped it and rescheduled it once. Radiology didn’t advise the doctor what thyroid blocking agent to use so I did that. I researched hard to see how/what Cleveland Clinic, UCLA and MD Anderson use and came up with Lugol’s solution.
Arose this morning at 6 and took 50mg of Prednisone and 50mg of Benadryl. Ever the dutiful nurse, I’d looked up all the above…..but being the PATIENT I trusted someone else’s calculations of how much Lugol’s solution to take. DA move on my part! LOL. It’s funny now but it wasn’t funny this morning. They prescribed 8 mL which is about 1 and 2/3 teaspoons full of the solution for me to take three days in a row, starting today. I swallowed that potassium iodine solution down and immediately followed with a ton of water it was horrible! Salivary glands went wild my stomach contracted and I spent several minutes fighting my body trying desperately not to reject the solution. It seemed like an hour but I lost the battle and hurled up some of it. My mouth is burned, my tongue is burning, my throat is burning and can’t taste anything! My lips are still burning and my salivary glands are still working overtime. This would be terrible if it wasn’t so typical for me. I detailed and dialed everything out except for this! The good old 50 mg of Benadryl has had me pretty much comatose all day on the couch. I woke up from time to time in the fugue state and tried to drink something cold to abate the fire in my mouth then fell out again, LOL. I’ve restarted the same movie 3 times! After I became conscious again about 45 minutes ago I started thinking ……I think it probably should’ve been drops and not milliliters. So I got back on the old handy Internet and went back to the drawing board to see what the heck I could do tomorrow because I’m supposed to take it again. I know there’s no way I can do that again tomorrow . Guess what I found?? It was supposed to have been three drops or six drops depending on who’s protocol you read not teaspoonfuls . Like I said, DA move on my part!
You should’ve seen Layla and the other dogs. She sat bedside me while I was lurching and wretching, ever watching me unphased by the sight. She’s got a lot of experience with my physical warfare over the last eleven years, haha. The fact that almost nothing grosses out a Lab helps. The rest of the pack were deserters! Well except Annabelle she just walked around with her balls in her mouth on the periphery as usual. Anytime one of us sneezes loud the others clear the decks! LOL…..I’m pretty much in good shape, except for my poor mouth and sad little tastebuds. Hey, maybe I’ll lose some weight!
Don’t lose your peace and have a great day! Staying strong and finishing strong on this end!
It’s shortly after midnight in West Tennessee and I’m awake. I’ve been watching TV, actually a movie I watch from time to time Whiskey, Tango, Foxtrot. Right now that is kind of my question to the universe…if you don’t get the title just take the first letters…WTF?
Today I start the pre-medication, taking Iodine solution before my MIBG scan tomorrow and Wednesday. The catch is that I’m allergic to Iodine! So I’ve electively chosen to take something I’m highly allergic to in preparation for a nuclear medicine scan which also has iodine in it. In search of an elusive health threat. Searching for a Neuro endocrine tumor of some sort. Something somewhere inside me that causes a simple bath to explode my blood pressure in spite of four anti hypertensive meds and spike my heart rate in spite of a load of beta blockade. Oh yeah, and take a blood thinner so I don’t throw a clot.
A little over 3 months ago I was working everyday, going to the local Y 3-4x week to work out, playing golf, hanging with my grandkids, husband, dogs and pretty much living a very normal active life. BAMMM! Someone pulled the bathtub plug and all the water has tried to run out. So has my life.
I get short of breath walking into work about 150 feet, feel anxious inside constantly, my heart hammers for no reason, fatigue, fatigue…did I say fatigue? Sweating just for moving. I’ve gained about 12lbs for no real reason, headaches that split my brain, just to name a few…… I’m really tough. Child birth with nothing, bone marrow biopsy was nothing, multiple surgeries and several under local anesthesia only. I’m a 25 year battle tested ER nurse. So when I say tough I mean tough. But hunting this bastard has been like a chess game. I suspect these 3 days will be rough but with my sweet Brett, my husband and angel we’ll get through….Our dogs by our side the whole way, family and friends prayers. I’m praying we find it, cut the MF out and get back to Sheri’s life!