Entire site crashed a while ago and I haven’t been able to resolve the issue until now. I know that there were some messages sent to me but they were lost in the re-boot before I had a chance to read them or reply to them. If you sent me a message, please write back and I will get back to you. I hope that things are back to normal now and there won’t be any more problems in the future. Please bear with me as I get used to a new system. Thanks.
I get that a lot these days. Where’ve ya been? Haven’t heard from you in forever, what’s up? You been ok? Hey girl, didcha crawl under a rock or sumptin? I just pull out the usual platitudes. The usual excuses when one has a chronic illness…. oh I’m fine, thanks for asking; haven’t been feeling well; lots of doctors to see; was in the hospital; you know the usual excuses that one can fall back on when chronically ill that stops nosy friends and neighbors from prying any further into the real reasons as to why they haven’t seen or heard from you in the past six month.
Some of it is actually true. I WAS in the hospital but how do you tell your friends that you had to get admitted because you couldn’t stop the endless diarrhea you had for months despite every medication you tried. That after wearing adult diapers for four months and passing the illness to everyone in your household you simply could not tolerate another minute. That you didn’t lose a damn pound despite living on the toilet, soiling yourself in bed to the point that you were afraid to close your eyes to sleep and being unable to leave your home for fear of an “accident” in a public place. That NO doctor had any answers for you about how to stop it. That you lived bringing samples to the lab next door which they all said were normal or “rejected” for only God knows what reason. Then there was the almighty violation of all….the colonoscopy. How is it that a person my age…45 years old has already survived a prep for an office exam, a flexible sigmoidoscopy, and two…TWO mind you colonoscopies along with intestinal surgery in 2003 which was hell on earth. Isn’t it enough to suffer with Lyme Disease?
So, for six months I decide to disappear for a while. I got the whole bowel infection under control and then I find out that the thyroid medicine I was on had basically come within inches of putting me into cardiac failure during the physical therapy visits I was doing in order to get stronger!!!! Here I am, struggling through PT visits, with excessive sweating, shortness of breath, tachycardia (fast heart rates) thinking it is only because I am out of shape and all along it is the damn medication that is getting ready to kill me. I was instantly pulled out of PT, placed on bed rest and yanked off the medication. Labs are being drawn every two weeks in the hopes that this Grave’s Disease is only temporary and will reverse itself simply by stopping the medication. Yippee, a whole new set of side effects to endure as I lie in my bed for the next few months.
At the beginning of January, my knees were “attacked” with some kind of either bone virus, severe inflammation, reaction to the barometric pressure outside, an arthritic condition or the Lyme Disease has reared its ugly head. I was unable to bear weight without severe pain on my right knee. The swelling wasn’t bad but it was constantly “cracking.” I decided to wait it out before seeing yet another doctor. I tried every home remedy I had from pain meds to patches to wrapping it but nothing was easing the pain. Within days, the pain had spread to my left knee. I decided just to tolerate it and wait for my next doctor’s appointment which is in a month. It wakes me up in the night but I do the best I can to tolerate it. I have no heavenly idea what it is and I wonder if it is related to stopping my thyroid medications.
There have been other changes since stopping the thyroid medications too. After seven months with no sign of a menstrual cycle and none of the accompanying symptoms, it returned today. I had two or three days of typical PMS symptoms, terrible cramps yesterday and right on cue today it decided to show up out of the blue. I must say that I was stunned. This has to be an effect of the pituitary gland waking up again in my brain when we thought it was permanently dead before due to the thyroid. Wait until the Endocrinologist hears this!!
Needless to say, when I have “disappeared” for long stretches of time it has always been for good reason. Typically I just need to be left the heck alone because how would you feel if you were undergoing all of these changes to your body? Do you think that you would be feeling very social? Would you want to chitter chatter on the phone or email? You most certainly wouldn’t want to accept any company to the house when you are on your sickbed, looking like crap, running to the toilet every 20 minutes and sometimes not making it in time now would you? I am sure that would make for real pleasant company now wouldn’t it. This stuff is hard enough to even talk about, can you imagine having to LIVE IT. I am sure you can try to at least sympathize.
Needless to say, disappearing for six months or more feels like it has only been a matter of days because trying to survive constant illness like this makes each day run into the other. Holidays pass and we don’t notice, nor do we care. We always try to make an effort for Christmas but sometimes even that one has to wait. Luckily we managed something small this year but Halloween and Thanksgiving were spent with both of us sick to our stomachs on our respective couches. It’s not that I am complaining by writing this post, I am trying to explain to well meaning friends who don’t hear from me for a while.
Please don’t take it personally if you write, text or call and don’t hear back from me. I may be in the middle of some personal health crisis and it completely slips my mind. It sounds cruel to say but I may just not be in a very good frame of mind to call back. Oftentimes, I just want to be left alone. I am sleeping, managing pain, or just plain too unkempt for any visitors. Being sick can be a lonely life but it is one I have come to get used to and a solitude I have come to enjoy.
Please understand that it is no affront to you or our friendship, it is just what I need to survive this illness. I pray that you will accept my request for solitude and comprehend the reasons why, now that I have shared with you what it is like to live in my shoes as a reality. I apologize for the graphic nature of this blog but it was necessary to get the point across. l still hope to get notes regularly despite my incapacity to return. They really do lift my spirits. Thank you in advance.
So, I decided to go on vacation for the summer… Mama and I went up to New England and left old Auntie Anne behind in Florida to deal with the heat. Mama wanted to show me around where she used to live. She said the water in the ocean is freezing cold in the summer so I asked her, “Why do people wanna swim then??” She said, “When the cramps start to go away then you can stay in for a long time and it feels real nice!” Kinda strange people these northerners but I’m gonna treat them all really nice anyways, like I always do, and maybe they will have some treats for me! Mama is gonna have me try some “lob-stah” but I’m not so sure I’m gonna like that either, but I eat everything, so I am willing to give it a try….. I’ve got my shades on and I’m ready to go so Kennebunk, Maine here I come!
“Are we there yet?” Mama didn’t tell me it was gonna take THREE WHOLE DAYS in the car to get where we are goin? I gotta admit that hotel we stayed in the first night was pretty swanky but we were so tired when we got there that we just washed off the road dust as Mama says and we hit the hay. I’m not gonna even bring up the yucky place we stayed the second night. Mama was la’llergic to the sheets, pillows, comforter and all the soap they washed them in so she had to take everything off the bed at midnight (we got there so late,) put her two beach towels from home on the bed (one to lie on and one for a pillow,) and sleep with just her jammies and bathrobe on. She was so cold all night. I offered her my woobie from my bed but she said that she was ok and I should have my blankie so I wouldn’t be afraid. I have such a nice Mama. Thank goodness we weren’t there for very long.
We stopped at some good places for chow along the way and people were really nice to me. Every one wanted to take my picture where ever we went! Mama said I had to stop after two cups of coffee cause we were making too many pit stops for nature ‘a calling. Can I help it? Small dog = small bladder. Nature needs to leave a message.
Mama saw her old friend at the beauty parlor today and I think they got a little creative with my hair-do this time…. If you thought my sunglasses used to get people’s attention, you should see it now, red sunglasses and a pink powder puff tail???? I will never live this down. I just hope it washes out before I get home. If I go in the wrong part of town they might use my tail for target practice just for fun!
Stopped by to see some old friends…. Mama said we had to stop here for Auntie Anne to make sure everything looked ok. She said that Auntie would want to come here if she would ever make it up north again so we came for a visit. Everything looked in good order here so we sent Auntie a text picture to show her and she said that made her smile. We said “we miss you Daddy GGG”, Woof Woof was my contribution.
I really like this place they call New England. It has nice people, lots of history, pretty houses on the ocean, great lob-stah and a lot of Mama’s super nice old friends. If only it wasn’t so far away from Florida… I think Mama wishes that we could come back and live here someday. Part of Auntie Anne wishes that we could too. I think we all know that it will never be the same ever again though. For now, this was a nice visit and if I ever forgot someone’s name…all I had to do was woof out “Dan” and someone would come running!
Now it’s time to go home and give Auntie Anne all of those bedtime kisses she has been missing so much every night!!! She keeps telling Mama how much she misses me but I know that within a few days she is gonna be saying, “MOM….come and get your dog off me….she won’t stop licking me!!” You gotta understand, it’s a poodle thing…..grin. It’s genetic, look it up! I’m serious, we’re lickers! Look out Auntie Anne, your kisses are on their way!
Let me begin by saying that I have the utmost respect for pharmacists. They go to school as long as I did to become a physician assistant. I know this because I went to the Massachusetts College of Pharmacy and Health Sciences in Boston (Manchester campus). I respect their wealth of knowledge about medications, their interactions, and general advice about over-the-counter products that I may not be familiar with. They are a jack of all trades many times and I use their services readily. However, when a pharmacist decides that he/she or his/her company is going to set up policies or protocols that override what the physician has written on the prescription pad, I begin to take serious offense. I mean intensely, serious offense.
I have been trying to get a drug filled for a long time now. I have been on this medication for years and I take it every month. It used to be that all my medications were delivered to my house by mail and the system was fantastic!! I had everything set up perfectly when I had my last insurance and then they decided to completely eliminate my plan all together at the first of the year so I had to switch pharmacies. In doing that, I cannot seem to find a local pharmacy that will fill this medication. I had this same problem when my insurance switched last time but then after they started giving me a hard time locally, I just went to their mail order system and no questions were asked. They would mail me my medicine like clockwork and I never had to fight for it. Now, here I am again with a new insurance fighting a local pharmacy for the same medication and they won’t fill it regardless of how long I have been on it or how much documentation that I give them of my compliance with the use of the medication or even after they spoke to the doctor’s office and got confirmation of diagnosis codes warranting the need for the medication and knowledge that the prescription had been written!
It is basically this pharmacy’s “policy” to be the drug police of the world and decide who should be given what doses of medication at what quantity that they deem correct. They have taken it upon themselves to cross that line into the exam room with the doctor and actually take the pen out of the hand of the physician when they are going to write a prescription that they feel is not safe, despite the fact that the DOCTOR is the one with the medical degree making the decisions for the patient. You, as the pharmacist, do not know the entire history of what has transpired with each patient and NO you do not have all the records of what has already been tried but the doctor does when she writes that prescription so the decision made by her is far more educated than yours in the first place.
It is her job to worry about tolerance and addiction of her patients, not yours. That will be handled between the physician and the patient. You’re job is to fill the prescription she has written especially after you have been given adequate reasoning and plenty of proof that this person is not pharmacy hopping, physician shopping, the patient IS in chronic pain and what she is currently taking has kept her stable for years.
At what point did it become OK for pharmacists to walk into the exam room and tell the physician I’m not going to fill that prescription just because I don’t believe in your treatment plan? Because that is basically what they are doing here. They are basically saying, we don’t see you making any attempt to take this person off this medicine so we’re going to force you to do it by not filling the prescription and making you find another way to keep her out of pain.
Never mind the fact that, a.) a lot of those other meds are not covered by the lesser insurances, b.) most of us have tried them already if we’ve gotten to the point that we are at now and c.) we don’t want to be on this crap in the first place just to be able to move…. but it is a necessity! We don’t enjoy having to beg for our medication any more, it’s degrading enough to be disabled. We are sick of being treated like street junkies when we are simply chronic pain patients who happen to tolerate high dosages of medication. If the numbers boggle your mind then you, as a pharmacist, should broaden your horizons and go do some more clinical rotations where people are really suffering and try to imagine how it feels to live like that 24 hours a day, 7 days a week.
So, that is my rant on pharmacies today. I was given the run around by this last place for weeks on end. Apparently it was a “floater” pharmacist who didn’t know the rules and she filled my prescription last month so I said, “Great! This is going to be a pharmacy that will work with me every month?” and she reassured me that I could get my meds there so I transferred all of my other medications from other places to that store. When I went in for the refill the following month, a male pharmacist wouldn’t fill it. He told me the female last month had been a “floater” pharmacist and he said that you have to call back to get the manager to do it (first red flag). I spoke to the manager on the phone, explained my situation about having new insurance and having some pretty strong meds so I needed a pharmacy that would work with me and my doctor exclusively to meet all of my needs. He said no problem and the manager filled it. When I went in over the past week or so, I was told that there was a problem and that they would no longer be able to fill this prescription for me at this quantity. Then, I wanted to punch a pharmacist. The first day last week I dropped it off at 2pm they made me come back at 4pm to talk to Ben the manager. I did that. He said, “No problem, we’ll just call your doctor on Monday (it was the weekend, of course) and get some information and you will be all set. We need to know like diagnosis codes, that she knows you’re here, confirm that she wrote the prescription, what she’s treating you for etc. All the pain clinics do it for us.” I figured whatever, I will just pick it up after physical therapy on Tuesday and then I walked into this today. “We’ve spoken to your doctor’s office and we still can’t fill this prescription for you…” AAARRRGGGHHHHHHHHH!!!!!!!
Don’t get me wrong. She was a very nice pharmacist. She completely left the counter, took me over to the seats and quietly talked to me for at least 15 minutes about the policy and how it got to the point that it did which is how I can explain everything that I did above in this blog. I couldn’t punch her. Plus she had glasses on and her name was the same as mine, so that made it kinda tough. She was really nice to me about the whole thing but it doesn’t change the issue that I have one week of medicine left in time to find someone who will fill my prescription.
I walked out of that pharmacy today with my head hung low, totally exhausted from overexertion lately, so much so, that we are gonna cancel my next PT visit and I am going to bed until Wednesday when I have to go to Melbourne Beach to see the doctor then I will be back in bed on Thursday. Sometimes with Lyme Disease you just gotta listen to your body and mine is saying it is time to stop!! Stressful situations like simply the medication issue is exhausting to me never mind all of the PT I’ve done and I even went grocery shopping for myself for the very first time in one of those driving carts! OMG that’s a story for another day…….no one and nothing was safe in the store that day. I was taking out displays, moving tables along with me, I hit a lady while going backwards trying to avoid hitting a wine rack in front of me, people were helping me…..it wasn’t pretty. Those carts are harder to drive than they look! Man, shopping took me like 2 hours. Sheesh. At least I didn’t break anything….well, I don’t know about that lady’s foot that I ran over. Sorry about that.
Alright, I’m gonna go now. Look at it this way, I may not have gotten my medicine but I am sleeping in my own adjustable bed tonight instead of behind bars for punching a pharmacist today! It isn’t all bad. Good Night~
As you all know, I just had hip surgery on Feb 29th and they are running me ragged with rehab, exercises, leg circles, stretchy bands of plastic, stair steppers and all other forms of torture you can imagine. I was very fortunate that I was only on a walker for a few day and then a cane for about a week and then I was walking freely. It has really turned out very well. But, I have to reflect upon the “Bike Saga” which took place two weeks prior to my surgery and lasted until two weeks after my surgery if you want a time estimation for you to understand the true lengths I have gone through for this hip (no pun intended.)
The doctor said that as part of this surgery I would need to use a stationary bike everyday for 30 minutes. No problem, I live in an apartment complex with a full fitness center that has a stationary bike that I have already tried so I am familiar with it. I called the office to find out the gym hours and the door code (in case it had been changed) and this is when the first bomb hits….”Oh, ummm, we hate to tell you this but the entire office, business center, movie theater, gym and basketball court is being torn up and renovated starting on March 1st and will be closed off to the residents for 6 to 8 weeks,” The day AFTER my surgery is scheduled? Great. I nearly passed out. There was absolutely NO convincing them of letting me “store” our fitness center’s bike at my apartment. Apparently it’s “against the fair housing act of allowing one resident to do, you must let all residents do” and blahblahblah. They just didn’t want me to use the damn bike is what it was. I said, “So, what are we going to do now?” So we asked them to get us into the gym at our “sister complex” called Coventry. It’s right here in town.
One day Mom and I got all dressed up and headed on over to Coventry to check it out. One of the maintenance men from our current complex was asked to transfer there so he was waiting out front for us when we got there. We were excited for him, he deserved the opportunity. Good guy, smaller complex, more money, just a whole lot easier for him to deal with on his own. Our place is big, he said almost 500 apartments but Coventry had about 350 and he was enjoying the new job. So, by the time we were done talking we had made it to the gym and as soon as I barely even saw the bikes (4 of them) I knew I was not going to be able to use them. They were SPINNING BIKES. The fact that it said “spinning” in large letters across the wall could have saved me a trip if anyone had bothered to mention it but I was grateful for their efforts nonetheless. I got on a bike and gave it a few spins but it was just as I presumed, I couldn’t tolerate that seat for 5 minutes, never mind 30 minutes a day! We thanked them and left, quite discouraged.
If you, as a female, have never seen or sat on a spinning bike my friend you will never forget the experience. The seat on a spinning bike is made to be so uncomfortable that you WANT to spend your time cycling with your butt up off the bike with your legs and your arms/hands supporting you. There is nothing like the pain of a banana seat like a spinning bike. I am supposed to be patiently sitting down on a comfy chair and pushing the wheels with my left leg while my right leg just follows the left one around down during my rehab cycling. My goal is to work the hip joint and strengthen it slowly, not tear it all up again. The spinners were not going to work. Moving on. Thank you.
Crap. Back to square one and my surgery was within a few days!! I had an appointment with my primary care doc and she said, “How about like a medical supply store? Do they supply that sort of stuff?” They do when therapy comes over to do home care, I can’t see why not. So, she gave me a prescription for it. When I got home I called the largest Medical Supply Company in town and they said we don’t supply that sort of stuff, it’s “sporting goods.” That’s not considered DME (durable medical equipment) so they can’t charge for it.) You would have to think of a sports place for something like that where they may rent equipment. Now where in the hell am I gonna find one of those in this huge city??? I just want a little stationary bike for a few weeks here people……..running out of options….
So I am in my surgeon’s office for my pre-op appointment and a lady and I were discussing my bike dilemma. She said, “Why don’t you just rent one?” There’s a sports store on University Ave that rents them out all the time. Then she proceeds to write down their name and number. I was so thrilled, bells were going off in my head, lights were all around me, birds were chirping, and all I could hear was “TAH-DAHHHHHHHHHHHHH…….” When I snapped out of it, It was like my name was being shouted from from God above until I realized that it was just the nurse calling me for my turn to see the doctor! I thanked the lady profusely and went on my way before I embarrassed myself further.
So, I called them the minute I got home and he had a bike that they could deliver at a decent price but then Mom started to second guess at what if the bike was a piece of sh*t, what if these delivery men carried the bike into our (beige carpeted) living room with dirty boots when we “just had our carpets cleaned” that same week, what if this guy didn’t give me my deposit back, what if I still hated the seat (even though I looked it up online and it seemed fine)….and on and on it went. No matter how many justifications to reality I could present she could always find something else wrong with renting a bike. I didn’t have any more time for her excuses, I needed a bike! It had been two week since my surgery now and my hip was tightening up. I was taking more pain medicine every day, P.T. was no where in sight (paperwork and scheduling snafu) and I was being able to do less and less each day. The bike was becoming critical.
So that was it, that conversation really pissed me off, I was getting a bike one way or another. That night on the computer, I started with Craigslist–nope, nada. Then I went to FreeStuff at Jacksonville–nope, nothing. Then FreestuffatJacksonvilleBeach still nothing. Damn it. So I went to Walmart.com and discovered that you can actually get a fairly plain stationary bike for just under $100 tax and delivered! I couldn’t believe it. This was less than the guy was gonna rent the other bike to me for! I said. ” You mean to tell me that I have been running all over this town, bothering people at their jobs (like at Coventry), picking people brain’s (like the lady in the waiting room), freaking out every day about how my hip is scarring up and the pain was increasing, going back and forth with my mother endlessly until we were both stressed and worst of all, going two weeks post op without a bike when all I had to do was email WalMart and say, “Hey! Send me the http://www.walmart.com/ip/Stamina-Magnetic-Resistance-Folding-Exercise-Bike/49302115 would ya? Yah thanks” and **BAM** five days later it was on my front door step!?!? Holy crap man. That was too freakin’ easy. Done. Lord, I love internet shopping.
Above you will see a photo of my little torture device that I get to ride 30 minutes on every day. It doesn’t have a lot of bells and whistle but it tells me time, speed, distance, calories and has an odometer. I put it together myself! Yes, yes I did and thank you very much for those of you who are clapping right now. So, it really wasn’t too difficult. They ship it to you with the body pretty much intact and you just add on the seat, back seat (which folds down nicely), arms, meter, and feet. There you have it, my tiny stationary bike that sits in the corner of the living room and is where I will be spending a lot of time over the next six months or so….sigh.
All in all, I’m glad that I bought my own bike. Now, when I put settings in certain places they will stay that way until I change them. No one else is getting their nasty sweat all over the same equipment that I will be using. I can ride whenever I want which suits my night time schedule so I am likely to be on there at midnight or 2am (like when I blog). It folds up and stands upright so it can get even smaller to stand in a closet if company is coming over. Thank God because this place is a tuna can already…Ha!
Truthfully though, the biggest feature most women I talked to wanted in a bicycle was the same exact thing I wanted…a comfortable SEAT! I just wanna get off that thing and not feel like I have dry humped the jungle gym for 30 minutes. Praise the Lord! Can I get an amen? This bike has a seat with some meat to it. Your whole butt is covered and you don’t feel that when you try to climb off it, Your pubic bone will need an application of ice for the next two days of so before returning to normal. It’s Just a nice cushioned seat that covers everything that needs to be covered which puts you in a semi reclined position because the seat comes up under the back of your hamstring a little on each side. Let me tell you though, the saving of the tutu is worth the loss of being perfectly upright in my opinion.
So, there is my bike saga and my high recommendation for the bike that I purchased because I love it so much. If you are in the market for a bike go get yourself one of these. I think that I paid about $106 total DELIVERED to my house and it would have been way less if I picked it up. You don’t need any tools, they give you everything that you need to put this bike together all in the box. The instructions were simple to read, just lay out your parts and take your time because you can end up putting nuts in the wrong way and the bolts won’t go on correctly. Gotta pay attention to the small details on this one, use the washers! If you go step by step, you put this together correctly and it will last you a long time.
I am off to go do my 30 minutes now as I have been a slacker lately. It’s the first few weeks of actual physical therapy and I can barely move when I come home so I usually wrap myself in ice for two days, down a bunch of painkillers and don’t move until it’s time to go back again. That’s just between us, ok? Shhhhh be quiet about that now……. Ok bye for now….
When you are a Chronic Lyme Disease patient, every time you are sick with something the tendency is for physicians to always blame it on your Lyme. I’m not saying ALL of them do this but I AM saying that some would do half the percentage of testing on you than they would on an otherwise healthy person who happens to come in with the same symptoms. Unfair? Of course. Illegal? Most definitely. Unethical? You betcha! Happens every day? Yup.
I’ve written a post similar to this before called “We get other “stuff” too…” where I talked about the fact that Lyme patients can get sinus infections, gastroenteritis or the stomach flu as we like to call it, strep throat, bronchitis, pneumonia, ear infections, appendicitis, or any other host of illnesses just like the non-Lyme community. We have to be aware of our own bodies and our doctors have to be sharp enough to know what is a Lyme related problem versus a routine health related issue.
When I wrote that post I was just talking about general minor illnesses but recently I had to make a major decision concerning my Lyme disease because it involved having surgery. In today’s world we think that having surgery can be no big deal most of the time. You go into a day surgery center, have a drug induced nap that is all safely controlled by doctors, you wake up in recovery, your family takes you home, you have a few really lousy days and it’s all done. Well, for a Lyme patient there is a lot more to consider.
Surgery for us is VERY dangerous. First of all, we are on a million medications. Some of those have to be stopped 5-7 days before so we are all screwed up from a Lyme standpoint before we even get there. We are on antibiotics already which complicates what the surgeon may want to give us that is specific to the particular procedure. Most of us have multiple body systems that have been attacked by the Lyme so we have medications controlling our heart rates, blood pressures, seizure prevention and even breathing patterns. Altering these medications or combining new anesthesia medications with these drugs can have some serious effects on the patient in the OR. The anesthesiologist has the toughest job in the room that day to keep you sedated long enough to do the procedure thoroughly and safely but still keep you alive without going over your threshold of drug tolerance. There is a lot to think about just from the medication stand point.
Secondarily, we have to think about the other issues like the possibility of infection. We know that our immune systems are already compromised and stress can even worsen that. Will that compromised immune system allow infection to get to our incision site or will it cause a Lyme flare up? It’s a chance you have to be willing to take. Then there is the post operative pain to consider. We are already struggling daily with an enormous amount of pain. How are they going to control MORE pain without killing us with more pain medications? They have to give us something because that would just be inhumane to do major surgery on someone and then say, “Oh sorry Ms. Lens, we’re ‘not comfortable’ with how much pain medicine you are already taking so we’re not gonna give you anything afterwards because we’re just too ‘concerned’ something might happen to your breathing…..”
Well, if you’re that concerned then you should put me in the hospital where you can keep me on oxygen and monitors 24/7, so you can intervene if that happens but get me out of this pain!! Oops, did I say that out loud? I’m so sorry…..exiting with a big smile on my face. **Sidenote: This did not happen in my case. Thankfully, my doctors were all willing to cover my pain needs (safely and within reason) with their prescription pads knowing the daily pain that I live with. I didn’t have to beg for my meds like some poor other Lyme patients do just because their MD is too afraid to cover their pain appropriately.
But back to my point of always getting a second opinion and how this relates to your Chronic Lyme Disease. I recently had right hip surgery for a tear in my labrum. I went to see a well known surgeon who I liked very much because I really wanted him to do the surgery. He (Dr #1) walked in the room with my chart in his hand, moved my leg in a couple of positions and said straight to my face, “I won’t ever operate on you because of your Lyme Disease/past medical history all related to Lyme and you’d be hard pressed to find any other surgeon in this city who will take that chance either.” My jaw hit the floor. I couldn’t believe that he expected me to hobble around on a cane for the rest of my life. I am only 44 years old! He recommended 2 months of focused PT on my hip and then a follow up and I walked out, flabbergasted.
Little did he know, I had already made an appointment with his biggest competitor in the city which was a very large group of doctors that had many amazing hip specialists. I saw them a week later. When I saw Dr #2 he was kind, thorough, and not one bit afraid of my Lyme Disease. He said that they did hip surgeries on people sicker than me all the time and my medical history did not worry him at all. If it put me into a flare up, we would deal with that when and if it happened. However, he said that he was talking with his colleagues and there was another doctor there who was better qualified to do the surgery that I needed done. That doctor was available to see me immediately if I was willing to meet him, did I want to? Well hell ya!!
We were walked across the office to Dr #3’s area and seen immediately. I was the Queen for the Day in that practice! Dr #3 said he had gone over all my records and seen my MRI already with the huge tear in it. He did the most thorough exam out of all of them! His only concern was that he couldn’t be sure if the pain was coming from the tear or coming from the Lyme (great, here we go again….) so I start defending myself again that it only started hurting when they put me in PT for overall deconditioning and towards the end of two months the pain was so bad I couldn’t continue. That’s not Lyme, that’s an acute issue. He wanted to give me an injection that would numb the joint but didn’t contain steroids because we Lymies can’t have steroids at all. If the pain came back within 24 hours, it was the tear causing the pain. At that point in the day, as kind as everyone had been to me, I just could not commit to having a needle blindly shoved into my hip joint so I had to refuse. However, he did say the magic words, “I know you are not up to it today but it would be my pleasure to do this surgery on you in the future if you decide to go that route. It is obvious to me that it is warranted and I have no concerns about your Lyme Disease whatsoever. Give me a call when you want to schedule surgery.” I walked out of there sayingto myself, “YES, BAM, IN YOUR FACE DR #1, I TOLD YA YOU **** . THERE IS A SURGEON FOR ME!!!!”
Then when I got home and came off my pedestal of glory, I sat down and really considered what to do. I decided to go the conservative route first and if it didn’t work then I would have the surgery. So, I did two months solely focused on hip PT (didn’t work) and went back to the first guy’s office where I saw his PA whom I like very much. Just as I thought, he said the PT was not helpful and there were “…no surgical interventions that this office has to offer you but you can go see our Dr#4 who does stem cell injections and see if there is anything he can do for you. Other than that, I don’t know what to tell you because no one else in the city will do surgery on you if my doc won’t.” I said to him as I stood to leave, “Don’t worry about me, I have a surgeon on standby waiting for my call who has already agreed to do the surgery but thanks anyways” and I walked right past him. I was so freakin ticked off. The look on his face was priceless.
Needless to say, I am a firm believer in covering all your bases so I made an appointment to see the doctor who does the stem cell injections. I knew that I had to have tried everything before I took the chances that I was going to take on surgery. So, I went to see Dr#4 and immediately he said I wasn’t a candidate for stem cells. I truly don’t believe he said that because it had anything to do with Lyme. I just think that stem cells would not help with a torn labrum in the hip. Of course, he reiterated the policy that his practice was “never gonna do surgery on a person with a history like mine” and I wanted to throttle him right then and there. But he did offer me the same shot that Dr#3 had offered (the 24 hour numbing shot) to definitively determine if the pain was coming from the tear but he did his shots under ultrasound so he could see where the needle was going. That sold me and I said, “Go ahead and do it.” I walked out of there pain free for the first time in eight months. Don’t forget, if it wore off in the next 24 hours then it was the tear that was causing my pain.
I had the best night ever. I walked to the mailbox which is like a mile away. I played with the dog. I didn’t use a cane at all. I was having a blast! The doctor had told me to go home and beat it up if I wanted to so I had a great night and then slept the best night’s sleep in a long time. Unfortunately, at precisely 2pm the following day, the hammer fell……the party was OVAH… (as we say in Boston). Done. The End. Kaput. The pain came roaring back like Katrina hit the 9th ward! That is precisely when I picked up the phone and scheduled my right hip surgery with Dr#3 for February 29, 2016 at 6:45am.
When I said always get a second opinion it’s because no one doctor is always right. I had my surgery done, there were no complications with stopping my meds or with the anesthesia or with post-op pain management or now during my first week at home of recovery so far. As it turns out, when the surgeon got in there he found out that I was walking on TWO major tears in the labrum so he was able to repair both and he even cleaned out some arthritis too so things are all shiny and new in my hip socket. My Lyme has not seemed to be a problem, I’ve had no herxes, no reactions to medications and was able to get right back on my normal med schedule without issue. I am walking on my leg just fine, doing the exercises like any other post-op patient would be doing and getting through it. The only difference is I am a little more tired than someone else might be.
So, my advice to you if you have a chronic illness and are facing a decision about possibly having a surgery for something that is not an emergency but certainly needs to be done is always get a second, or third, or fourth opinion. Keep seeing doctors, PAs, ARNPs or whomever you need to until you have all your questions answered and all of your fears put to rest before you move ahead with surgery. I had no doubt that day that when they rolled me into that OR, they were taking my Lyme Disease just as seriously as the job they had to do in my hip and that made all the difference in the world. I had done everything that I could do, now it was up to them and they did it beautifully.
I am really sure that you were all terribly worried that I bit the bullet, took the long nap, aka the big sleep, went six feet under, said Goodnight Irene, bought the farm, was swimming with the fishes…..meh, enough of this stuff, you get my point. Nope, I am not deceased and lying in the cold, dark earth draped in a beautiful satin casket entombed by concrete for God knows how long. Giving you some nice visuals today eh? My internet site decided to take a dive on me for oh….let’s say about six months or so.
I think my last message went out in August 2015 and then kaput, I couldn’t sign on to my site any longer. The screen would come up but the cursor wouldn’t even move no matter what I did. Now you gotta understand, I really know NOTHING about computers which is why my site has looked exactly the same way since the day I started it. I am terrified to try something and screw it all up. I don’t even know how to put a link into a post. Pretty sad eh? I have to write it out and you guys have to copy and paste it which really sucks because it is so much better when you can just click on it from my page and it would take you right there. I seriously have to learn how to do that. But anyways, I’m off topic as usual. The LymeLens site freezes in August so I call my computer guy.
Let me begin this by saying that my “computer guy” happens to be the most talented film, video, computer media editor of all time. He has worked in Los Angeles, on all sorts of shows for all of the famous cable TV stations and he just finished editing a NOVA episode called “Memory Hackers” where he will be entered for Emmy consideration next year. He’s done sports, he’s done music video’s, he’s done National Geographic, he even did the 25th anniversary episode of the Discovery Channel show. The dude knows his sh*t. Luckily for me….he happens to be my big brother!
So, when I said that I wanted to start a blog who do you think I called first? DUH!!! My brother!!! This man has been gracious enough to put together this blog for me from the beginning, REMOTELY because we live 1400 miles away from each other, in his “free time” while balancing freelance editing jobs, a family and commuting 2 hours each way to Boston on the train to teach at Emerson College as a Professor. Not to mention, he is on all types of subcommittees for Emerson for everything from screening new applicants to the Graduate Program to buying all of the fancy equipment in their television stations (plural). I don’t know how he does it all.
Well, I told him back in August that when he was done his editing job but before he started his new class schedules could he please take a look at the blog because it wasn’t working. He said, “Sure, no problem.” About another month goes by and I still can’t sign on so I call him back. “What’s up with the blog dude?” He says, “Well, I am having trouble with my main server so this is going to be more complicated than I thought. We may have to switch to an entirely different platform do you care? Don’t worry I already backed up all of your stuff. (this is all greek to me at this point).” I said, “I don’t give a crap what you do with it as long as the name stays LymeLens. Please just get it working so I can start talking to my peeps again. They are depending on me!! I just want to turn on the computer and be able to type and press send, that’s all……FIX IT!”
The holidays come around and the damn thing is still not fixed. I have lost hope that I will ever be a blogger again at this point. I know that I have lost all of my former readers and now I have to start all over again even if I do get back on line somehow so I am totally disgusted. We just slug ourselves through the holiday bull crap like most Lymies do and Bloody Yippee it’s 2016! Another year on the calendar to wish that things will change and yet you know that by December you will still feel just as shitty as you do now. Not to mention my damn website is still broken. Now it’s something about some “other guy and his server and blahblahblah,” none of which I understand at all so I am only partially listening. If I knew how to do it, I would have done it myself. That’s why I sent it to you….the computer genius in this family. If it was a medical issue, I would expect my phone to be ringing from you because I am the paramedic and physician assistant in the family. That’s just the way it works ya know?
Anyways, I had bigger things to worry about because on top of the Lyme, I was suffering with a bad hip. I was trying to prevent a surgery that was going to be inevitable. I did every conservative measure that I could to stay out of that OR but there was just no way to get the leg strong enough to compensate. I had right hip surgery on February 29th (yes, a couple of days ago) for what turned out to be TWO tears of my labrum. We thought there was only one. That’s a story for another day. So, last weekend I got more promises that my brother almost has the blog figured out and he thinks it should be all set by Sunday (2/28/16). I wasn’t gonna hold my breath but I was cautiously optimistic.
FINALLY, when I got out of surgery and was home resting in my bed on 2/29/16 I took the chance and put the website into the search box then hit send. *BAM* my beautiful page came up totally intact and I could move around it freely. Oh Praise Jesus, Hallelujah!!!!! I was so thrilled, I couldn’t believe it!! There are still some bugs to work out and some things seem to be different than they were before but I hope that I can get writing again and get LymeLens to be a part of your lives on a regular basis once again.
One other piece of big news for my followers is that I was asked to contribute to a book that will be coming out soon. It is a compilation of the works from roughly 40 authors/bloggers who all have a chronic illness of some type. We are each sending in a piece we wrote with our biography and photo and it will be included in the book, hopefully with little to no editing. The book is geared towards living the fullest life that you can while still having a chronic illness. It’s very exciting and I was so pleased to have been chosen to participate!! This will be the second time that I am “in print” and that is quite a surprising feeling for me. Hopefully a sign for the future!!
I will wrap it up here by telling you that I am so happy to be back and there are plenty of stories to fill you in on from the last six months. Oh my word….the drug bust, the eviction people who cut the screen on the porch, the cat on the deck at midnight, the holidays, visitors from out of town, the hip saga, and just so much more. Get ready for a wild ride. There will probably be some doggie stories in there too because Pootie has been awfully hilarious as she begins to grow into a teenager. For now, I will let you go. Hope to see you coming back soon…..
Technically, since our toy Poodle, Pootie, is a little over a year old now she is actually entering her teenage years in “people age” according to the current dog charts. Needless to say, she is starting to act like it. She is rebellious, never brings the ball back when we play fetch anymore, has stopped coming to you when you call her and you can just forget the “lay down” command altogether. She has begun to have a mind of her own while walking on the leash and is not following commands like she used to staying close to Mom’s leg and avoiding traffic.
Worst of all, she has taken on this ridiculous habit of barking at any little noise that happens outside our door like it is someone coming to rob us. Here’s the problem…we live on the ground floor and our front door faces the main entrance walkway of an apartment complex!!! Do you realize how many people walk past our door in a single day? These poor people must jump out of their skin when they walk towards the building and are met with this RAWW-RAWW-RAWW-RAWW until we can get her to calm down and realize that a.) they are not robbers, b.) they are not coming to kill us, c.) she is safe, d.) there is no reason for this insane barking and e.) she is driving us cray-cray in the process!
However, along with Pootie’s tendency to bark at the front door for any noise whatsoever, which is not always a bad thing mind you, she has brought so much into our lives that I thought that I would give you a little photo montage of her past year growing up with us.
Pootie likes to start her day reading the newspaper with Mama. She has to get caught up on all the latest political issues, doggie park progress and sports updates (especially during football season-Go Patriots!) Occasionally, she finishes before Mom so she just sits in the window and watches people go by. Funny, she won’t bark at them when she can see them coming…unless they have a dog with them or if there is a squirrel passing by. All bets are off then!
After reading the paper and having lunch, it’s time for a walk in the neighborhood or on the beach if it’s not too hot. It can get REALLY hot down here in Florida for little doggies like her so there is no way that she is going out there when it is 98 degrees outside with the sun beating down on her. She wouldn’t be able to handle it. But when the weather is nice, she loves to go for a ride in the car just about anywhere you will take her, even if it is just to run errands! She is still shy around strangers because she came from a rescue shelter but we are slowly getting her socialized with both people and other animals. She has come out of her shell quite a bit already.
When she gets home it’s time for a little snack and a nice long nap either along the body pillow on the couch (like above) or snuggled up with someone in the recliner. Anywhere there is a comfortable lap or throw blanket that she can scratch into a big fluffy pile to settle down into, she is happy and ready for dreamland. That lasts for a couple of hours and then she is full-on puppy speed again for play time with the toys in the living room!
Of course, everything STOPS if her Patriots are playing football on television that night. All of her toys get put away early, her teeth are brushed, face is washed and she is in her Patriots Pajamas ready to watch the game with Mama until the final second comes off that clock! She doesn’t even notice if anyone passes by the front of the house because she is so focused on the game. It’s incredible. Either that or Mom’s yelling at the TV is drowning out the noise so she isn’t hearing it….. Did I mention that my mother happens to like the Patriots too?
All in all, I would say that Pootie has settled in nicely to our house and has become an important part of our family. I know that Mom would really miss the quality time she gets to spend with her when she gives her “brushies” everyday and they cuddle. For me, my special time is nap/cuddle time while Mom goes to church every day at noon and I get bedtime kisses every night before she goes to bed, Hey, I guess everybody has their thing with their pets right? Especially if you treat them like your children like we do.
Pet ownership is a lifetime commitment to an animal in our household. It’s the way that I was raised and it’s the way I will always treat any animal that I take into my home. Whatever they need, no matter the cost, I will do whatever it takes to provide for them until they pass from a painless cause, surrounded by love, if at all possible. Our last three pets were a dog who passed at 12 yrs old, a cat at 17 and another cat at 21(!) so we mean what we say. I imagine Pootie has a long way to go and we will cherish every minute of it.
Little did she know… that when that man shoved her in a crate and put her on a plane in China, with her little red passport and papers to safely leave the country (which we now have in our possession), that she would end up in a home like this! I can only imagine what she went through to get to us. So, thank you for listening to my story about the bundle of joy who brings happiness into my life every day, despite her “Terrible Teen’s” lately. I know it is just a phase and this too shall pass. For those of us who were not blessed to have children, such as myself, our pets mean everything to us.
Hello fellow bloggers. Just caught this quick video as I was reading my random piles and piles of endless media that crosses my bed-desk every night and I came across this awesome news report that was played in Delaware tonight. I watched in rapture as the culmination of all our dreams are finally coming to fruition….. People are starting to talk about the “possibility” that CHRONIC LYME MIGHT ACTUALLY EXIST!!!!!!!! I was just so excited that I had to send you the link so you can check it out yourself. Just click on the reporter’s face and the video will start playing. It is in multiple parts so even when she stops, just give it a minute and she will come back on to continue ok? Enjoy! We may be gaining some ground here people…..
PS. If you can’t click on the link to make it pop up on your screen, just copy and paste it to your browser search box at the top of your computer screen, then hit enter. You can also get to them through Twitter by searching #47TTBC. Good luck tracking it down, it is well worth the effort!
Yes folks, tomorrow is my first official day of home physical therapy. It is time to make those first moves towards getting out of this bed. I am so sick of this disease and all it has done to my body. It has taken all of what was a nicely toned ballroom dancer’s body and turned it into a shriveled up lump of old lady skin. Maybe I am exaggerating a little bit but that’s what I feel like sometimes. When your weight goes from 127 pounds of solid muscle to 97 pounds of skin and bones back up to 134 pounds of NOT muscle, let’s just say it’s not pretty.
This body has been put through torture over the past four years. I have ingested thousands upon thousands of pills, shoved IV fluids of caustic substances into my veins to kill the bacteria attacking me, eaten or drank the most awful tasting substances you have never even witnessed on those “gross-out” shows on the Food Network, been shot with unknown substances claimed to be “beneficial,” rubbed strange smelling oils all over myself, soaked parts of my body for hours in crystals and powders and food substances that were supposed to help detoxify my system….Oh my Lord the list goes on and on! Literally, I really don’t think that there is much more that I could try to make this disease go away.
So now, I am just going to try to make the best of it and live my life with what I have left physically. Right now, that is not too much, let me tell ya. I haven’t been out of bed since the second week of January due to a worsening of my POTS (that’s the head spinny, legs go numb, bp falls when you stand up thing that I have told you about before like a million times…keep up with the blog people….geesh). So, with all of this time I have been spending in bed my legs have gotten pretty weak and my endurance is really poor. I tire easily and get short of breath with little exertion. I have a heart condition, from the Lyme too, so that acts up with exercise which just adds to the shortness of breath and makes me overheat which also makes me want to pass out. It’s like a revolving door, ya get it? Yah, this physical therapist is gonna LOVE working with me.
I met her last Monday for our initial evaluation and she was only supposed to be my intake evaluator because she is like a supervisor who then assigns the patients to the best physical therapist that will suit each case. After Tanya and I had a chance to discuss my history of how I ended up like this, what my current symptoms were, my complaints, my goals and she heard the treatments I had already undergone (this was about an hour long conversation) the next words out of her mouth were, “Oh girl, I’m keeping you. Nobody else can handle your case.” That kinda made me smile a little, on the inside of course. I’m glad she is keeping me. She specialized in cochlear vestibular physical therapy which deals with balance problems which is one of my biggest problems! Since the dang Lyme hit me I can’t walk past a door jamb without becoming personally acquainted!
The way I see it, if you’re gonna be messed up, then be totally freakin messed up right? I have finally found a group of people at this rehab center that are willing to provide me with the help that I need to get better IN MY HOME and my insurance will be paying 100% of the cost. I could not be happier. The fatigue of having to go to them for all of these services would most certainly make me so much sicker, I would end up hospitalized. They are going to get me a medical social worker to help us get more services for the disabled, which we are not taking advantage of and will help us financially.
They are also going to look for a counselor who will do home visits that specializes in talking with people who have chronic illness and how to cope with it. I had tried to find one myself when I was so sick on home IV antibiotic therapy but I couldn’t find anyone! I was most disgusted to learn at that time in my research that I also could NOT find a single place that provided respite services for a senior adult taking care of a disabled ADULT child. My poor mother was beyond exhausted taking care of me alone and there were no professional companies, covered by health insurance, to provide her even an afternoon off. It was a disgrace. It appears that I won’t have to worry about all of these issues AND be the “sick person” at the same time now since I am under the wing of this new home health company. I can have a home care nurse if I want one, a home health aide if I feel I need help bathing or dressing or cleaning etc. This has been sent from heaven and I couldn’t be more grateful.
Where was this two years ago when I was hooked up to my IV pole at home having seizures in the arms of my mother as she tried to soothe my pain while we rode them out together because we had no one to help us? This has been an incredible blessing to finally have crossed our path so I intend to work my butt off at PT tomorrow with Drill Sergeant Tanya. The time has come to liberate myself from this prison of a bedroom. After five years of stealing everything away from me and taking over my life, MY war needs to end. Chronic Lyme Disease is a battle but if you keep fighting in whatever little way you can, you will always have more power over the disease than it has on you.
I know it’s hard to believe when it has knocked you down for the 5th or 6th time but keep going my friends. That’s what I’m doing. Just keep going. Something or someone always turns up to make it all work out in the end. Happens every time! Just trust me ok? I’ll keep ya posted on my Boot Camp training. Talk at ya soon~~