Withdrawals And One Week Fentanyl Lollipop Free !!


IMG_3282image20140726-114710-42430084.jpg

Hello Luvs,

Wow…One week has passed….and I have been free of the Fentanyl Lollipops for 7 days now!

I would say that growing up in an abusive home was horrendous. Being robbed at gunpoint at the age of 11 years; in a shoe store with my family, was just terrifying. I also think that  getting married, being abused and getting remarried all the while being abused even worse, was pretty challenging. I didn’t know what “challenging” was though, until I had to flee the marital home with my two baby girls; along with help from the domestic violence shelters. My little girls  were only 3 and 5 1/2 and I was 30 years old. Later I was diagnosed with PTSD and “Battered Woman’s Syndrome” and found some solace in trusted Psychologist whom I still know to this day. I had felt that battling Anorexia & depression on and off since the age of 17 until I cured myself following a horrible motor vehicle accident in 2002; was brave and courageous. Having gone through Acute renal failure, being robbed again in 2013 and being involved in 2 Motor vehicle accidents, through no fault of my own, I thought I didn’t exactly have such an “easy” life. The second MVA in 2002, I suffered numerous injuries and multiple surgeries; including several pieces of hardware placed in a few different parts of my body. I’m on my second pacemaker, the first being “a piece of cake”. Meaning that the second pacemaker surgery in 2013, did not go quite as planned. After getting into my chest, the Neuro-Cardiologist found out that the 1st pacemaker had worn a hole right through my pectoral muscle. Then not only did I need a new pacemaker, but the 45 minute to an hour surgery turned into a 3 hour ordeal in which my whole left pectoral muscle had to be rebuilt. The team was smart and did research on RSD/CRPS, a Neuro-autoimmune disease that I ended up getting after my 7th surgery.  It was the surgery on my right foot in 2007, in which the horribly painful nerve disease started. It spread and it spread until it went systemic following that major open surgery in 2013. I even endured a CVA and a mild heart attack in between the 10 surgeries following that MVA in 2002. I suffer from an MTBI (mild traumatic brain injury) and went through 3 years of TBI rehabilitation to learn how to cope with:  not being able to cook when nobody is home (because I may leave burners on and hurt my family or myself), not being able to comprehend what I read anymore after having been a College graduate with a 3.9 GPA! I had to learn how to live with leg braces, hearing aids, special prism glasses, balance issues, much less concentration capabilities and just about zero short term memory!  The worst of these being the chronic nerve pain and all of the pain following those years and still to this day.

I went to a pain Dr. for 3 years and he did everything from epidural nerve blocks to trigger point injections and biofeedback along with pain Psychology appointments. I was so happy when I read the notes from the pain Psychologist’s because they wrote that I was not an “addictive personality”. I never drank, smoked, did any drugs….prescription or otherwise! I was one of those “good girls” who had always tried to be “teachers pet” and get a 4.0 GPA and still try to get “extra credit”. Of course I’m a “type A” personality person who likes to do things the right way the first time if at all possible. I always did my best at everything I endeavored. I made alot of mistakes but always came back and tried again, while pulling up myself by the “bootstraps”.

The chronic intractable pain that has gone along with all of my injuries and surgeries since 2002 and then the diagnosis of CRPS in 2007; and later the shock of getting the “full body/systemic CRPS” has been traumatic to say the least. I was always very cooperative and followed whatever the Dr’s told me to do. I trusted again and again and again; when most people would’ve given up long ago, I just kept believing in the “goodness” of people or at least trying to find some good in all people. If you’ve been following along at all, you’ll know that I met Dr. Bullach, my GP for 12 years, in 2002 during a hospital stay following that MVA.  I was in there for pain control and met the pain Dr at the same time. I trusted him right away and thought he was a kind and “teddy bear-ish” type of personality.  He told me that I “could trust him” and that “he would be the eye in the middle of my storm”. He said he would help me and cooridinate specialists and take care of all of my medications etc. He told me “not to worry”.  We tried every medication under the sun, it seemed.  Everything either made me deathly ill, very sick or I was allergic to it! By the time we were finished and had found one thing that finally worked for my kind of pain, there was something of a “book” of all the meds that I had tried and which had failed for me.

Finally, I tried the Fentanyl patches and they made me nauseous and really “loopy”. I went ahead and tried them again because I just felt that a patch was so easy and you didn’t have to think about it all the time, many times per day etc. It finally helped to relieve my pain. I had a hospital bed in my home because I couldn’t even get in and out of bed or get any sleep due to the amount of pain I was living with at the time. I had been offered a “pain pump” that they fill with morphine, by the pain Dr. ….but the auto insurance was fighting me so much and I just didn’t have a whole lot of “fight” left at that time. I also already had 2 screws in my right shoulder, a jaw implant and had a pacemaker! I didn’t want anymore “things” put into my body. Especially not something with a catheter that would’ve been stuck into my spine that had multiple herniates and bulging disks, degenerative disk disease and Scoliosis.  Luckily I didn’t get the pain pump because later we found out that I suffer from Hypogammaglobulinemia, a blood disease that means I have an immune deficiency in my IGG, IGA subsets of white blood cells. I could have become paralyzed and could have gotten numerous infections had I allowed that pump to be placed. I made the right decision for me and today I’m so glad that I did.

So I had been in a “pain pump” support group, just to find out information for myself about the pumps and to make friends with the same kind of pain issues that I suffer from. Everyone was so kind and many were knowledgeable. Some of the people mentioned these “pain lollipops”. They said that they helped a lot and very quickly for the terrible nerve pain. I checked in with my GP, Dr. Bullach about them and he started me on them right away. That was in 2005, after I’d finished treatment with the pain Dr.and he’d put me back in the hands of my GP.  He told me that because I didn’t want a pain pump and I was going to go the medication route for my pain, that it’d be better for me to be in the care of my GP. He agreed that Dr. Bullach would prescribe the pain meds. He told me that my Dr. could consult with him at any time and he would help.  He also agreed that it was better for him this way because he was “looked at under a microscope” and didn’t like prescribing pain meds.

These experiences were all difficult, painful, scarey and life altering; but nothing prepared me for what I’ve gone through this past week with the withdrawals from the Fentanyl lollipops.  I’d been prescribed them and had been taking these for the past 10 or 11 years! Time just kept passing and the regimen was working; although I asked many many times over especially the past 3 years to get taken “way down” from the amount I’d been taking of the pain suckers. Dr. Bullach just kept on telling me to “trust him” and that he “was the eye in the middle of my storm”.  He told me that he’d “gotten me out of that hospital bed in my home”!  He reminded me that I was able to at least get out and do a little bit more than I had been before the lollipops. So I trusted him; though I still continued to ask him to slowly take me down because I felt that I was falling so often (6 times in 2014 and 6 concussions!!!) and though I have balance issues, I thought in the back of my head that maybe it was partially the fault of the meds? I never even took an Aspirin for headaches in the past, prior to this car accident and the injuries from it. Now I was wearing 2 patches of Fentanyl and taking sometimes approximately up to 20 or + lollipops daily to control my CRPS and the other pain issues. I had even woken a “sleeping monster” in that MVA in 2002! I had been born with “Arnold Chiari I malformation”. It showed up on the MRI after the MVA. It is a congenital defect in which the tonsils at the base of my brain stem get swollen and do not fit correctly into the spinal cord column, causing great pain for some people and others never know they have it! It all depends on many issues and variations. The horrible whiplash being my 2nd one and then the MTBI, “woke up” the sleeping congenital defect. Hence, another horrible pain issue to where I cannot even hold my head up for long periods of time without causing great pain.

So as you’ve probably been reading my past few posts, you know that my GP just abruptly left in December 2014. Without any feeling, caring or the tenderness I’d seen before in his eyes; he just told me he was leaving and that that appointment would be my last one with him. He promised he’d talk to the pain Dr. that knew me. He assured me that my treatment would be and stay the same as it had been because it was working! He promised also to send my records to the pain Dr and to personally talk to him on my behalf. I had received a letter from my health insurance company, stating that they “would no longer pay for the Fentanyl lollipops for pain after March 11, 2015, unless a pain Dr. agreed with Dr. Bullach’s treatment plan.” He told me not to worry about a thing and again to “trust him”. Well, as you know, none of that ever happened and the Dr. who took over for Dr. Bullach’s patients got left with a “mess”. He could not handle the volume of patients on top of his own, especially the amount of “pain patients” that Dr. B. had accumulated!! Luckily for me, I’d been a patient in that office since 1986, and had a history with that other Dr. as well. He reluctantly helped me get the pain lollipops and patches, but was swift to inform me that he was not going to be prescribing the amount that I’d been taking under the other Dr.

I was afraid, but I was motivated. I have been through so much, but it has made me a strong woman and a survivor. I took myself down from 20+ suckers daily down to only 8 in just a couple of months time. I cut my amount of the patches in half as well. I went through some hyperalgesia and some misery, but I did it! I was taking less and less as I was looking for a pain Dr. to help because the other physician in that practice didn’t feel comfortable prescribing the kind of pain meds that I needed to survive now, with all of the pain that I live with on a daily basis.

Finally, I found a nice pain Dr. and luckily I carry my records with me when I go to a new specialist. I had everything in order and I felt “safe” with him right away. He told me to finish up the pack of pain lollipops that I was taking and then  go to sleep on July 12th taking one last sucker. Then I was to wake up on the 13th of July, and never take another Fentanyl lollipop again; after 10 or 11 years of taking them, it was over! I was starting a new pain management regimen and I was fearful, but knew I could do it!  The first day was not so bad until the night time. I did crave the mental picture of having something that my brain associated with immediate pain relief!  I felt nauseous, achy all over and I was so hot, I thought I was going to spontaneously combust!! Then I’d get chills, diarrhea and started to vomit. I felt jittery and anxious and didn’t want to do anything but cry and sleep and lay on the couch! I made a video of how I was feeling at 5:00am on the 2nd day. The second day was more of the same and the third day was the worst! I did manage to go with my husband, daughter,& my 2 granddaughters to an hour or so of the kids “music in the park Wednesdays” Summer program.on the third day.  I returned home sicker than ever afterwards!  Finally, I started researching on forums and “You Tube” etc. I learned that if I took a medication called “Clonadine” aka “Catapress”, it can sometimes help with the withdrawals. I called the GP and within an hour an half, I had the Catapress in my body. It was the first thing that actually took a little bit of the edge off from the withdrawal symptoms.

The pain Dr. didn’t seem to think I’d have too much or too many symptoms because he said we were “faking out my body” by switching to a different BT pain medication….something  more safe and not made for “end of life” and “terminal” patients.with Cancer.  He told me that the pain lollipops were/are dangerous, “very dangerous”. He said that I should never have had them. So I’m not sure why my body still went through horrible withdrawals, maybe because of my many bad pain issues?  But I felt like I just was going to die and really didn’t care if I had, at that point! I’m so lucky that my husband is a teacher and he was home for me. Also, my oldest daughter lives nearby and she was a great help and has been. She even was calling several times daily and was stopping over to bring me some “Gator aide” to help my electrolytes along with my favorite food, “french fries”, to get me to eat something substantial!

Well, today it is one week and I am Fentanyl lollipop free. I’m very proud of myself for doing this without having to go anyplace and get help elsewhere. I was afraid because I had a previous heart attack and stroke and I’d had seizures following the MVA for about 6 months. All of those things can happen when going through withdrawals. I’m so very lucky that these things didn’t happen again. I don’t feel good yet. I feel very tired, heavy and I still have stomach aches and diarrhea, along with nausea and depression on and off. I think I’m over the “hump” or the worst of it. I think I will get just a little bit better each day. It’s going to be very very hard because for over 10 years I had a “quick” relief when I was on an outing or needed quick breakthrough pain relief.I have to retrain my brain and myself to just plan ahead and take what the pain Dr has prescribed for me now, about 45 minutes before I may need it. That’s not going to be easy and the new meds are feeling like they’re ripping out my tummy. People tell me that is the withdrawals and not the meds. I’m willing to see this through and keep on keeping on!

Thank you for allowing me to share my journey with you and I will certainly be keeping you posted. Thank you again…..Also, if you would like to watch my very dark (because it was middle of the night with no lights on and I was crying very much) “You Tube” videos, please email me for the link and I will give it to you. I have them not ‘private” but “unlisted” …so if you have the link from me, you will be able to watch them. There are three videos altogether right now for this experience thus far. Again, my email is: jewelrymkr@aol.com…..g’nite luvs….

willsTrue Colors:  Seeing Is Believing.....sins

Patient or Caretaker??…..That is A Question!


So…today I’ve been really thinking about the caregiver’s role, when it comes to having a person in the home who is in chronic pain, or ill. Now I feel that I can sort of see both sides of it because I grew up in a home with a sick mother and a father who cared for her, for the most part. My mom had something called “SJS” or “Stephens Johnson Syndrome” and it’s a blood disease of the mucus membranes; the eyes, ears, nose , throat and private parts at times.  She had COPD and a Collagen disease and bronchiectasis ( a disease of the bronchial “tree”).  My mom was in and out of the hospital while I was growing up. I was separated from my family and sent to this or that Aunt’s home or Uncle’s home. As a side note, I want to let you know, if you haven’t read this yet, that I have been abused in just about every which way since I was a child, an infant even. My older two brothers were also abused, but the oldest was the “honorable son” who did everything right and didn’t get it quite as bad as my middle brother and I did. But on the other hand, my middle brother is bi-polar; which they believe my mother suffered from also.  He was very abusive towards me since I was born and my mother told me some stories about me being an infant and how they had to lock the door to my bedroom so he wouldn’t come in and “hurt” me. He was finally diagnosed about 1991, and he was put on Lithium. It worked for awhile and he did really well, until my mom told him that it “made him fat” and that “he looked like Buddha”. So he stopped taking it from that day forward and has still been abusive to me with words, letters, postcards and anything he can do to me as an adult.  We weren’t allowed to have friends over or have them sleep over for the most part. I had a few friends from the neighborhood over a few times but we had to play outside or in the basement. I had one sleepover EVER and my mother said “never again, because the kids might be afraid if she has to go away in an ambulance”.

OK, so I gave you a little bit of history, just to let you know that I have been on that side of the fence.  My mom then died of colon cancer in December, 2002 (only 3 months after my horrible car accident, that injured me for the rest of my life).  A year prior to that December, in September, she had an operation to get the cancer out of her colon. They thought they got it all and they thought it had NOT metastasized. But they were wrong and she died only 14 months later.  We had had an on again and off again relationship since I confronted my parents about the abuse in our household towards me, growing up. I confronted them in 1997 or so and they hated me ever since. My father wrote me a letter and told me that I was “off  the pedestal” and “never to be on it again”! I would meet my mom for a coffee at McDonalds, a neutral spot..but my dad and brothers would hover around driving in and out of the parking lot, trying to scare me the whole time. My mom would try. She brought me a tea cup of my great grandmother’s and she’d bring little things for me to give my daughters. We tried and I think if my older brothers and my father hadn’t stepped in each time and continued to tell her to be mean and to “not forgive me for talking” or for being the “truth bearer”…we might have repaired our relationship somewhat; but she was pretty much “controlled” by my dad. She was controlled to the point of having to leave receipts on the table if she spent a couple of dollars on a coffee while out. Ok…I think you get the point now. But I have been on both sides and I was there for her the day of her surgery and they only allowed one “woman” in the room for her “pre-surgery” that day. She chose ME to be with her for a couple of hours in that room. We did have the best 2 hours ever, together. She and I talked and she sort of “apologized” and I took it for what it was worth. It made me feel good that for one time in my entire life, she actually chose me over anyone else, to spend time with. It was good for us because it had never happened before and would never happen again. That whole day at the hospital, my father and brothers were horrible towards me and my mom’s sister, my Aunt Margaret, was there also. She treated me badly too and she always treated me as a “lesser” person than anyone else. She grabbed my cellphone out of my hands (when I was the one of all the people in the room that day who was the most poor!) and started calling people long distance etc. She never asked me if she could do that and our plan didn’t even allow for that, at the time! My two brothers had much more money than I did and that was so rude! 

On another note…they said that I was never there for her during her Cancer treatment…but I was there at the beginning and whenever I would ask where they were going to be on any given treatment day, they would say that they “didn’t want me around”. They didn’t want me there and they’d never tell me where it was going to be happening. But then they put me down for not going? Then in August of 2002, on the 11th of the month; I got into a horrible car accident, that was only 11 months after my mom’s surgery and Cancer announcement. After the car accident, I was hurt so badly, that I didn’t even know anything. I had gotten an MTBI and had to go to TBI rehab for 3 years! I was in a wheelchair and have had 9 surgeries now so far and acquired a horribly devastating autoimmune, progressive disease called RSD/CRPS or “Reflex Sympathetic Dystrophy or Complex Regional Pain Syndrome”. I ended up passing out several times when I would get someone to drive me to go and see her in the hospital, during her last 2 or 3 weeks of life. They teased me and said that I was “faking it”. Well, I wasn’t faking it and I passed out later at a PT appointment and my BP was only 70/40 and my HR was only 23 bpm!! I spent the night in the heart unit and got a pacemaker implanted the next day! I spent a week almost, in the hospital because it was giving me “electric shocks”! We later found out that some nerves were cut because it was placed deep into my Pectoral muscle as a precaution, because I was too thin and it would’ve been too vulnerable. I guess I wasn’t “faking” ?

What I really wanted to talk about today before I kind of got sidetracked with speaking about my own experience at trying to help and being a “caretaker child” for my mother. Is that I got a note from a Caretaker husband of a lady who has RSD/CRPS and some other illness also. He wrote this to me and this is what I wrote back to him:

 *****************My reply to him is 1st & then what he wrote 1st to me is following:
**my response to husband/caregiver: I’m sorry but my husband is committed and has been here with me for 16 yrs & when he’s sick I help whatever I can do. But even he told me to tell you that it is not “AS HARD AS ” it is for him (the caregiver) as it is for me (the pain patient)!!! The caregiver can rest, get sleep on between and can still do things that the chronic pain person cannot do! He would never want to switch places with me …HE Said…& I would never wish this pain on him or anyone….Suzanne
——————–
**Husband said to me: Thanks for accepting. I hope most realize i is as hard for a spouse as those afflicted with the pain. At least for those spouses who are committed and do not run away. Please share our story of such as it is important for as many to learn about such more so then give to this cause.
Thanks,
Pat

**********************************************

Well, I was discussing this in my support group and got several different opinions from many different people.  I told them that I was going to discuss this in my blog and I do not use last names or real names or anything, so it is OK. I just thought you might like to chime in on some of the things that were said to me about this subject:

One woman wrote this as a response to this Caregiver’s opinion:

I guess its really a perspective issue with the statement “it’s as hard as”. I say this because I know that my husband, who is an amazing, loving, supportive husband, feels so lost, useless, frustrated and helpless because he can’t “make it right”, there’s nothing he can do to “fix it” for me. Some days its ok for him to hug me and some days its not- he usually finds out after hugging me and realize he hurt me, and I will hurt for hours. I’m in a wheelchair, and unless you’ve been in one, you really don’t realize how many things have to be taken into account when planning. He’s planned surprise date nights and they’ve been a flop because of 1 or many possible different issues that arise, or something happens and he feels horrible that the 1 day I get to go out, things don’t go smoothly. So while we’re the ones enduring the pain and all the glories our ailments come with, I think that spouses deal with as intense issues, different ones, as us. I mean at times I feel like my husband has it worst than me- he’s made the choice to b with me regardless of my RSD, he’s voluntarily given up certain dreams. For some spouses, it means giving up entire aspects of their life as a couple. So from certain perspectives I can see how that statement can be true, and yet in other instances it’s not. Regardless, I commend any spouse who not only “sticks around” but remains committed to the marriage, making the best of the situation and continues to see their spouse for who they are and not their illness. Just my opinion.”

Here are a few more responses that I got:

…..”People who aren’t suffering themselves try to fathom it, like I did when my mom first was diagnosed. I thought I could understand. I thought I could guess. I thought I could empathize. I WAS WRONG.”

….”I don’t hurt like I used to so I have started to forget what those who suffer 24/7 every day battle (because I think I have tried to block out that horrible memory.) But I remember the feeling of “this is crazy, this is insane, this can’t be real” always being in my heart and mind. And that is why I try to reach out and help as best I can. Because I was there once, and NONE of you should be there. But EVERY ONCE in a while, it comes back and reminds me of HOW MUCH HELL you all go through every day and why you are all the most amazing, strong and wonderful people I have ever been blessed to have I my life. Because it never stops for you.”

….Then I replied to them with this response: “ My hubby says it is hard to watch and miss some things at times and lots of other bad things for him …BUT… He’s seen me suffer even prior to getting RSD/CRPS with chronic intractable pain from a MVA! Then few years later only to get this 24/7 painful, progressive autoimmune disease… He’s saying its NEVER AS HARD IF YOU AREN’T THE ONE IN PAIN …because he CAN take time outs and breaks and he CAN sleep!!”

***and then I also said:  “One thing that we do know is that there is no cure for RSD/CRPS yet! There are remissions but true diagnosed RSD/CRPS has no cure as of this date ! My husband washes my hair too and he’s the one who said that he hates that I’m in pain but he does Not feel it’s “Just as” bad!! He said when someone has Cancer it’s horrible to watch them be sick & vomit etc… But to hold the sick persons head while vomiting is not as hard as doing the chemo or the vomiting! **this was per my hubby”…

…..another woman wrote: “Suzanne, he is so very very right. We have all been sick to our stomach, but when you wake up from what little restless sleep you got ready to vomit from pain your body was feeling in your sleep, healthy people rarely can sympathize with that. Or breaking down sobbing because you want to sleep, you’re exhausted beyond the breaking point, but the sleep can’t come because the pain WON’T LET UP. It’s just insanity that no healthy person can fathom because they can keep themselves awake only so long…. to the point it hurts, but their body WILL GO TO SLEEP at some point.”

…….and then a woman wrote this: “SO WELL SAID EVERYONE!! RUTH I THINK YOU ARE LIVING MY LIFE!! MY HUSBAND HAS BEEN AWESOME. HE’S BEEN RIGHT THERE WITH ALL MY PAIN AND MY TEARS. HE NEVER SAID NOT ONE TIME THAT HE UNDERSTAND HOW I FEEL BUT SAYS HE CAN ONLY IMAGINE HOW I FEEL. I EVEN TOLD HIM THAT I KNOW THAT HE DID NOT SIGN UP FOR THIS AND THAT IF HE WANTED TO LEAVE I WOULD TOTALLY UNDERSTAND!! HE SAID FOR BETTER OR WORSE IN SICKNESS AND IN HEALTH THAT HE WAS HERE TILL THE END!! I APPLAUD ALL SPOUSES WHO REMAIN AT OURS SIDES TO ENDURE OUR GOOD DAYS AND BAD DAYS WITH US!!”

……and then later, this response was sent to me from another person: 

Suzanne, I hope you don’t mind – but I would like to “weigh in” on this subject. Thanks for the invitation. First, I do not feel it is for any one of us to tell another what is or isn’t appropriate to feel – whether being the “sick” is harder or the “one” watching is harder. I would not ever want someone to devalue what my husband/caregiver might feel. I’ve been married for 28 years, and have had RSD for 18yrs (15 full body/systemic.) I also have a daughter (now 24), who has had medical problems since birth. She also has some type of neuropathic pain that is currently undiagnosed, but has MANY of the characteristics of RSD. We have almost lost her 6 times. So I feel I can speak from BOTH sides. And what I can tell you, is that is complete and utter TORTURE for me to watch her suffer, because I LOVE her. During times of her serious illnesses, or those that have caused her great pain, I often feel it is harder for me to watch helplessly, than had I been the one to take on her illness, and I’ve actually prayed to God, to have Him give me her share of the illness and pain, as it is so very hard to watch helplessly, as she fights to overcome whatever illness/pain she’s going through.
Most of the time, I DO feel that it is harder on my husband than it is for me. They have to watch someone who is in pain every minute of every day and there is nothing they can do to help. I think it’s especially hard for a husband to watch his wife suffer, while he is incapable of doing anything to make us better. Most husbands/men are “fixers”, but they are helpless in “fixing” us. I would guess many of them feel that they have somehow failed in finding us the help/the care/the cure that they want so badly for us.
Not only that — but they also have to work and make a living, all while caring for us. Add to that, doing laundry, cooking meals, cleaning house, grocery shopping, running errands, taking care of the kids, and all that lies in between. Our spouses have to take up every minute of their day doing something that we would have ordinarily done.
Although they may get some sleep and can do many things that we can no longer do, even those things don’t go “unpunished” in some manner. They spend a lot of time thinking of all the things we used to do together. They worry whether we will progress and continue to get worse, wondering if they will be able to take care of us all of our lives – worrying what happens to us if they are no longer here to take care of us. ALL of these things go through their minds. Oh — and those things they can do that we can no longer do?? Even that can make them feel guilty for doing. We might reminisce about doing it with them, and so when they do those things – they might not enjoy it quite as much. Not anymore – because they know we would LOVE to do it with them, we’d give just about anything to do it with them. So, because what this, they might still do it, but not without feeling some sort of “twisted guilt” – guilt when there should be no guilt – but is, nonetheless. They now do those things with friends or other family, or by themselves – or – not at all.
Even lying down at night – either next to us – or in the other room (because we might not be able to handle movement of the bed, snoring, the movement of the sheets anytime they move, or even the temperature in the room or the bed covers/blankets, etc., etc.) they WORRY.
I think with all things considered – watching my daughter being so sick (she’s spent 1/3 of her life in the hospital) and myself being so far progressed w/this disease — I DO think it’s harder on my husband, than it is on me. I feel so very guilty knowing he’s working for a living, to keep a roof over my head, putting our kids through college, paying the expenses – all of the things mentioned above. Watching him vacuum, or do laundry while I’m laying in bed or on the couch because I physically can’t do it — I feel guilty – but even more than that – I am so very, very GRATEFUL that my husband is one of few that truly hang around to deal with all that has been thrown their way. If ANYONE doesn’t think these men spend time crying and worrying — and even thinking how different life could’ve – my bet is, they’re wrong, because even those of us WITH RSD spend time thinking about how life could’ve been.
I hope this makes sense to all who take time to read it. While we would never ever wish this illness on our spouses/caretakers -in the same manner, I would never ever wish their role on anyone else, and think it’s not only important, but it’s VITAL that they are welcomed in, and are able to learn as much as they can about this disease, so that they can help their spouse in dealing with this horrid thing called RSD/CRPS. (Sorry for the length, just thought it was too big a subject to not give it my full attention.) Love and soft hugs to all!!

another woman responded with this: “ Suzanne Burnett Stewart thanks for posting this, it actually opened the door for me and my hubby to have this discussion. Hes not one to really voice his feelings but being it was in response to this post we actually had a great conversation, yet another opportunity for us to appreciate each other and walk in each others shoes” for a minute

and then I responded to that with these words, to the woman prior to the response just above this: 

You’re very welcome ! And I hope it allows others to talk with each other! I definitely asked anyone to “weigh in” because I wanted and welcome all opinions and I value all opinions! Just as I like my opinion valued. Thank you Susie for your opinion and fir the record, I grew up with a very ill mother who had “SJS”, horrible , painful blood disease. She was in and out of the hospital all of my life and she lost 10 out of 13 children which means I lost several siblings and two that were after me and I actually remember the ordeal. My family and I were robbed when I was 11 at a shoe store with 2 men with guns to my fathers head and knocked my sick mother down and out cold!…still they were horribly abusive… But I loved my mom nonetheless and I became a caretaker the older I got. I wasn’t a spouse but a child of a very long term very I’ll mother. I do know both sides and it was horrible feeling helpless…when she’d cry and bang her head on the wall due to the pain, i felt scared, alone, hopeless & helpless! I was not judging that husband but giving my opinion because as my mom eventually died of colon cancer and I just know that no matter how bad I /we felt for her during chemo and such, and no matter how much I felt so helpless and never got to go shopping with my mother in my whole life and missed out on loads of family things and times … No matter any of that …it was still, in my opinion much easier for me to hold the bucket for her, sing to her, watch her die (while I was in a wheelchair in pain too,) than it was for her to be the one dying and going through chemo and radiation.!!! So I feel that I have a good idea of both sides and have been through so much that I have a good grasp on both sides of the “fence”…and I can honestly say it was horrible sitting with my mom when she was in so much pain and somehow …rubbing her feet and singing to her and telling her that I forgave her for everything that happened was very horrible too…but her dying in pain and her lifetime of pain …it was still , only in my own opinion, much harder for her… and my husband had his own opinion and that is what I wrote above…he feels how he feels and we are all entitled to our opinions and our feelings. I am so happy to have opened up the lines of communication for some of you and those you love. That’s what I’m here for… Only to listen, talk and help… Thank you all so much and you may keep the conversation going as long as you wish! I also feel that everyone’s “worst” is theirs and they feel it and they own it… I think with regards to that one husband…he definitely has a right to his opinion and his feelings.. We own those! I just discussed it with my husband and got his view and then gave his view and mine and we all started giving our opinions. There is no right or wrong here. We can only continue to love and try to be loved and not everyone will always see things the same way and that is how our Lord made us! That is good! His bless and nite nite to all!
Finally, I got one more response from the woman that I had just responded to and this is what she said to me:

That’s the idea of discussions Suzanne! I’m so glad you opened it up – and thanks for doing so, as I think this subject is a very important one! Hopefully it will give some of our caretakers the idea that no matter how they feel – it is OK to feel what they’re feeling! I know I would NEVER wish this on my husband, nor would he want it! LOL He has actually told me that he doesn’t think he could go through all that I go through, so of course, he feels it’s harder for me – but I guess I see all that he does, and somehow, in the long run, it’s probably about even, as he’s picked up so very much of all the family’s things that MUST get done/should be done as good parents, etc. He works tirelessly 7 days a week making sure that we have clean clothes, a clean home, and of course making a living so that we have a roof over our heads and the ability to get good medical care.
This has opened up good conversations for married couples or even parent/child relationships for each party to know that no matter what they feel – the empathy for us, the feeling that they have it truly hard, even that they are happy that they do have it — all of those feelings are OK and normal! When we take our vows, it’s for better or worse, in sickness and in health. Sometimes, the sickness happens to be things like this, and I applaud those parents and spouses who “stick together” through all of this, supporting and loving us through it all. I want everyone to know that just because we are sick, does not in any way make us less of a wife (husband), partner, and friend, but whatever our caretakers feel, whether they feel it’s harder on them or us — it’s still what it is, and no, it’s not fair, but it is life – and this is just another turn within our lives, and happiness can be found, even through this! Love and hugs to all! Night!

Well, then I got a few more responses of a word or sentence with people agreeing or disagreeing politely. But I thought this was a great topic for a discussion. I still feel, no matter what anyone else says…that it is much easier to be the one holding back the hair or the forehead, if there is a lack of hair; while someone is vomiting from chemo treatment.  It’s much harder being the one to feel awful, hurt like hell, and be sick, feel lifeless etc; but yes….yes…it is very hard being the caretaker also…but in a different way.  Thanks for reading today and I hope your day is a pleasant one….love and hugs, SuzanneImage

 

 

 

 

 

Yes, Suzanne…you’re still Invisible!


Just before my mom died, well I guess a good year to fourteen months before she died; they’d found that she had colon cancer! When she had her surgery in September of 2001, I was there for her. We’d been on bad terms for a number of years because I had confronted my parent’s re: a number of things that they had done to me as a child growing up in their home, that I felt were abusive. Later on, when I went to get help for anxiety, depression & Anorexia Nervosa; The Dr.’s validated my feelings and then some! My mother’s own youngest brother (my Uncle) called and spoke to my Dr. and validated everything I’d told them, and more!
That’s another story for another day…..For today, I wanted to talk about the day of her surgery and how she had to choose one person to stay with her prior to surgery. She chose me! My heart was so very happy! My father,my mother’s older sister, & my 2 older brothers were all furious! They all had to wait for about 2 hours during her pre-op, out in a visitors/family waiting room. I had the nicest two hours that I can ever remember having with my mother that day. We talked about life in general and “girlie” stuff that we never really talked about before. It was a good bonding time that I’ll never forget.
Even though my father, two brothers and my Aunt all treated me horribly that day. It’s still a day that I won’t forget. It was time well spent feeling closer to my mother than ever before! Just for the record, my dad and brother’s made fun of me, taunted me about “Anorexia, dieting,food etc…” They even forced me by teasing me incessantly, to eat french fries smothered in cheese and then dipped in a Chili and Ranch sauce!! After all of those years of them teasing me,calling me “Fat”, taping pictures of cows on the mirrors in my bedroom, and writing “Fatso” on pictures and putting the pictures up on display for all to see on the front of their refrigerator! NOW they wanted to tease me about being “too thin”..& told me that I “should eat ranch fries and chili dogs” as they rubbed their obese stomach’s!
Well somehow none of that mattered so much on that particular day, because “I” got to spend those quality time hours with my mother! So after her surgery, we kept trying to keep things “patched up” for the most part. My youngest daughter had even had been given some flowers after winning a Highland Dance competition. She wanted to stop at my parents home and give her flowers to her “Nuna”. But When we arrived and saw that my middle older brother was there visiting with his two kids and also my oldest brother and his then wife of 12 years; were all there visiting…then my daughter didn’t want to go inside. She begged to stay in the car and for me to just go up to the door and offer Nuna the flowers. (**you see, my middle older brother was the one that was and is most abusive towards me, He also was charged with “molesting his daughter when she was 3 years old! He also was diagnosed as having ” Bi-Polar disorder!” He would not take the Lithium prescribed for him because our mother told him that It made him”fat” and he “looked like a Buddha”! My oldest brother had been cheating on his wife and everyone knew everything but pretended that it wasn’t so! )… So I just went up to the door with the flowers from my daughter and told them we just wanted to drop them off for Nuna!
In the few moments that I was inside their back door, my brother’s made crude remarks about my “lack of largeness of certain “women” body parts! Also then to follow that, was my 10 year old nephew laughing so hard about what his Uncle and father had just teased his Auntie about! I was mortified! I quickly left and my sweet husband drove us home safely while I told them what had transpired! They were all angry and upset and hurt for me! When at home, I called my dad to tell him how appalled I was at the things he allowed my brothers to still say to me after all of these years! My fathers response was ” yes, I’ll have a talk with them to let them know that their timing was off! Since your mother just had surgery” I told him that He “just didn’t get it..and that what they said TO ME WAS WRONG!!!! Not the timing!!! I was furious again…as usual!
Well, needless to say I / we didn’t see my family much during that year either, though we made a valiant effort again at the time of mom’s surgery. When she went through her chemo therapy, I wasn’t there for her! For one thing, any time I would ask where a procedure was or what time it would be, my dad would tell me lies or just tell me that my mom “didn’t want me there! So sometimes I’d find out on my own that she was hospitalized and I would just show up ! I would get yelled at and called names and so i just stopped! But then I was called a “bad daughter for not being there for her mother! No matter what I ever did or did not do, I could not please them!
Then in August 2002, My husband and I were in a bad car accident! Luckily my daughters weren’t in the car with us and luckily my husband wasn’t injured. I was injured badly with multiple lower back,neck,head,bi-lateral knees and shoulders injuries,…and more! I had to go to TBI rehab for three years! i have had several surgeries, including: both knees, shoulders, face, had a permanent pacemaker and more! I had to have two titanium screws put into my shoulder and the pacemaker does 60% of the work for my heart! Now after all of that, I had a heart attack then in 2005 & a CVA or stroke in 2006! My family was called from the hospital about how injured I was and they cared nothing about it or me! They scolded me for “not being there for my mom during her chemo therapy time”!
Just three months after our MVA, my mother died from complications of colon cancer and I also believe from her hidden lifetime of abusing laxatives and suffering from eating disorders!
My father and brothers treated me worse than the scum under the bathroom sink, from that day and forward through even today. When I found out that my mom was sick and dying in the hospital, I found out from my Uncle, not my father or brothers! I was in a wheelchair from my injuries and when I’d get to the hospital, my brothers would block the doorway to my mom’s room. They wouldn’t allow my husband anyplace but the hallway! He knew what they were/are so he did it for “me”. He took me each day for the next ten days that she was alive. At first she was still awake and more lucid. I would sing “You’ll Be In My Heart” to her and I would whisper in her ear. I told her that ” I loved her and that I knew it wasn’t her fault. The last thing she said to me was “I love you infinity”! I knew that she meant she was sorry for hurting me growing up…I told her that “I love her infinity” too! She turned to my girls and told them that she”loved them infinity too! We all cried because those were the last real words we heard her say.
She was in and out of sleep mostly and it was the week of Christmas! On December 22nd, at 9:00 am, we got a phone call from my father. He told me that my mom had died at about 4:00 am! Yes… They all had time with her, they had her body taken away and already cremated…then they called me!
I should have known and somehow inside, I knew they enjoyed hurting me more! I was crying and since my father, ex sis-in-law, and both brothers were together crying, I thought this a good time to put all things aside and grieve together as a family. Then my father actually said “NO”, that I couldn’t come over to his house and grieve together with my family! I was so hurt that my EX sister in law was there but I was not allowed. They all “hate me” because I am the truth bearer. I spoke up and confronted them about the abuse I endured growing up. Actually, I’m still trying to deal with it. But since they lie, deny and get pleasure from my pain, I cannot make it stop and so I am forced to stay away!
Just recently as this Summer, 2012, my hubby and I saw my father and his girlfriend at the free concert in the park three times! Oh….and…by the way when I tried to introduce myself to her ( his now 3rd one! ..He re-married only months after my mom died and she divorced him only a year later. She even wrote to me and told me that she “always believed in me but every time she tried to stick up for me/defend me; my dad & bothers got verbally and horribly abusive towards her. Later, she wrote to me as I’ve said, and she told me that my “father never speaks the truth and does not know what “truth” is”!!! FINALLY SOMEONE BESIDES A PSYCHOLOGIST/& Dr’s believe me!)..so again…when I tried to introduce myself to this lady, outdoors on the patio of a coffee shop; she just looked right through me as if I was some kind of “monster”. She gave me a most horrifying,nasty look and then she walked the long way around the table and away from the coffee shop! Now…that behavior coming from a person who’s never ever met me nor even been in the same room or space as me…ever! Of course I Cried, especially then when I saw my own father come out of that coffee shop looking for her; and when he got a cell phone call from her, he looked up and over, then saw her and quickly walked by me without even a nod or 2nd look!
The next time that I saw him was at my Aunt Vera’s funeral. When my cousin’s husband was finished with the Eulogy he said “does anyone have anything else that they want to say before I close”? Well I’d seen my dad crying and then clenching his jaw when my cousin’s husband, Paul, was saying very kind things about my husband and especially me! He said that I “am an Angel to their family, for helping with my Aunt with her hair,nails and for taking her to church theater and out to concerts in the park and for ice cream!” Also he liked that we frequently visited her and I even used to decorate her door for each new holiday! (Well…I did that until my father butt in and went over to her apartment and took down all of the decorations that I’d so painstakingly put up for her)! When I saw my dad crying and after hearing my other cousin, Aunt Vera’s son, tell me that when my father arrived he’d told him that he “didn’t want to ever see me or speak to me again especially not that day! So to be kind at my father’s sister’s funeral, I went up and gave him a hug and he actually hugged me back and the cousin who had given the Eulogy, said out loud “I do believe a miracle has happened here today!” Well…after that, on the same day, my dad shook Craig’s hand ( my hubby) & told him “thank you for taking care of Suzanne all of these years”! I quickly explained that my husband and I “take care of” each other! No one “takes care of me and though I’m disabled, I’m not unable! That day at the cemetery he took pictures and he even “forced” me to be in his pictures! But then, the very next time that I saw him about 10 months later, at the free concerts in the park; he snubbed me and shook his head ” NO!!!” While walking right in front of us on the sidewalk, with his little “friend”! The people next to us were so appalled and said ” honey, was that your father?” (Because I had yelled out “Dad!!..Dad!!”).. I was crying, and said “yes…and my parents were and have been abusive for my whole life and I tried to confront them and they hate me for it forever! She said that was despicable behavior for a father and I should be glad to be rid of him! Well the next time we saw the two of them at the next concert in the park, I tried agaIn and said “hi” and was totally ignored. The final and third time, I walked right up to him, as he/they were sitting in lawn chairs, and I hugged him lightly by the shoulders and I said “I love you and I forgive you!” He said nothing but shrugged me off..once again! I do understand though…because at my Aunts funeral “people were there,family was watching”! At the park, only his girlfriend was there and she didn’t go to my Aunts funeral. She never got to hear anyone say kind and nice things about me…dang!!! She only hears the lies and twisted stories told to her! Well, it’s his/their loss..because anyone who truly tries to get to know me, knows that I am a good and kind Christian person!
I guess I’ll end this blog today, by sharing that I have gotten a couple of text messages from my oldest brother, lately. He said “Merry Christmas” and then “Happy New Year”! I wrote back a kind and short response saying the same to him. Then I decided to tell him about my upcoming heart surgery on Feb19,2013! I don’t know why I expected him or any of them to care? They’ve not cared or helped or shown any kind of normal loving responses since my MVA 8-11-02! They don’t like me, don’t love me and never have! It’s always been about them! They just lie, deny and get pleasure from my pain! My cousin even told me as much! I somehow always knew and always felt it! I knew that “if” I ever “told”, I would lose their fake, overbearing, bullying, teasing, hurtful and vulgar “kind of love”! Well, I even have lost my oldest daughter to their “need” to hurt me. Instead of helping me to keep her a “good girl” …they “egged her on to hurt me/us”, gave her excuses and covered for and helped her along in those behaviors! They’ve even gone so far as to befriend my ex., who was found “Guilty” by a jury, of hurting another girl besides me and after me! At first, during the divorce, my dad was helping and even got his BFF to write a letter to the F.O.C. Stating that he’d witnessed my husband being abusive towards me!!! But now, I’m “a liar” and they all are horribly abusive and mean to me!!! It’s hard having several chronic pain issues. Having RSD/CRPS, along with Atrial fib and Dysautonomia/POTS/NCS , degenerative disc disease and much more but too much to go into to here today! But I will say that I then had a heart attack and a year later I had a true CVA or stroke and they continue to be mean, hateful, hurtful etc…and I just leave them alone! I mentioned to my oldest brother on that text message, that I’m having heart surgery on February 19th and none of my family cares! They’ve not been there for me through any of my pain or surgeries or anything since my MVA in 2002, I thank God daily for those who have been there for me; my darling husband of 16 years now, and my great friends!!! Thank you ….love, Suz

20130201-113003.jpg

20130201-113009.jpg