Please Help This Blog Win?


Hello Luvs!

This year for the WEGO HEALTH awards, my blog/this blog……our Blog; “Tears of Truth”, has been nominated “Best in Show””-Blog”! It was nominated through the WEGO Health awards website! We are so excited! Please just take a moment of your time and endorse my nomination by visiting the ensure below and just click on “endorse Suzanne Stewart”. I need your help to walk with me through this every step of the way, if you’d do me the honor? I did not participate last year when I felt that I couldn’t beg people to vote for me. But this year I feel like this blog deserves the award and “it” has been nominated. It’s not so much “ME”, but this Blog, that deserves the nomination and maybe, hopefully the award for “Best in Show-Blog”… here’s the link to endorse this blog! Thank you! So much! Please also “share this link”….thank you so very much, from the bottom of my heart!

 Here’s the link:

https://awards.wegohealth.com/nominees/562

Day #1 Stopping Fentanyl For Pain


Well, the day is here…It is July 13, 2015 and my new pain Dr. has instructed me to stop taking the Fentanyl suckers for BT pain today! I had my very last sucker at 4:30 this morning. I’m feeling sick and scared and jumpy and nauseated. I have a stomach ache and diarrhea and I feel like I want to crawl out of my skin. I’m even taking some Ativan to help with this,but nothing is really helping. I’ve been on these suckers since 2005 May!!! I had been on up to 20 or so suckers daily when  my old GP, Dr. Peter Bullach MD, was my GP from 2002 until he left in December 2014.  The day he told me he was leaving he still gave me the script for the suckers and I had been on 3 different strengths and almost 8 per day of each, or 7 sometimes, depending on the strength I had left.  I never took an Aspirin for  pain in the past, prior to the car accident and then getting the CRPS and then it going “SYSTEMIC”,  along with having : Degenerative Disc disease and Chiari I Malformation, Polyneuropathy, and Radiculopathy RA, OA Dysautonomia/POTS, Hypermobility and more. It’s just too much for one person to take. I know they say that “God doesn’t give you more than you can handle but I”m just about out of “handling anything”.

My disability started in 1998 with PTSD and CKDII & I was approved for SSDI first time I requested. I am not new to pain, but used to emotional pain. Since 2002, and the MVA, I’ve had the added misery of the physical pain. A person can only take so much and this is going to be a short post as I thought I’d do a sort of  “Journey through my withdrawals from the Fentanyl Lollipops”.  I want to share this experience so others will  know, see and also understand what it may feel like for them to go through withdrawals too.

Today is day #1 and honestly, I’m very lucky and very glad that I had started weaning myself, on my own since January 2015. When I found out in December that my Dr. was leaving, I got very afraid. I started going down a bit on my own. Thank goodness I did that because I may be dead or even more ill than I am now, if I hadn’t. I went down about 80% and then when I finally found and met my new pain Dr. he told me to “go to sleep on the 12 th of July and use a Fentanyl sucker and wake up and never have another again.”  He told me that “they are very dangerous. They are for only “end of life” terminal illnesses. He told me that “I never should have been on them unless I had no stomach or could not eat” etc.  I was shocked because I’d been on them without any problems really until this year since  2005. Hey, did you know that these kinds of meds can cause a Heart attack AND /OR a stroke?? Well, guess what???? I started these in May of 2005 just after my heart attack, but I did in fact have a heart attack AND a CVA in 2006. Be very careful….just be very very careful.

Well, this morning I was craving the suckers more and every night lately I’ve woken up in piles of sweat and feeling so hot and “on fire” as if I was going to “blow up”. I feel awful as it is 8:45 pm now. I wasn’t able to do much of anything today. My husband has been awesome, as he always has been since the beginning.  I can tell he is worried because I usually sit in my “Lazy Boy” chair when I’m not doing so great and in the evenings, but today I’ve taken to the couch. I’ve been laying on the couch; in and out of the bathroom and unable to eat or even drink too much. I managed some chicken and a few bites of baked potato for dinner but that was it today. I have stomach cramps, a headache and I feel achy all over. My body feels as thought it’s on fire and my true places in  injury and insult to my body hurt more than usual and I can feel each individual spot and at this point I’m not sure when or if I’ll be able to go out as I’ve been doing on the other meds.

I feel horrible, my head hurts even and every sound, smell and sight is making it worse as time is going  by. I’m wondering  if I’ll be worse before I’m better? I will keep you posted as I’m going to be keeping a diary here of my journey through withdrawals because I pray that I can inform and help someone; with what I’m going through.  First, right off the bat, I would tell you to make sure that you have a good pain Dr. that you trust who is on your side.  Listen to them and do what they tell you to do.  Make sure that you have something to take the place in your body of the drug that you are trying to get off of.  For me, the pain Doc switched me to another Opiod that he feels is more safe. He to ld me that “my body will be tricked into having something there to keep me safe from seizures , heart attack and/or death.  My brain will still want me to have the lollipops but I have to fight that.  I don’t understand that  or I should say that I didn’t understand that feeling until today. I literally feel terrible. I’ve tried to keep “dum dum suckers” nearby and Tic Tacs close. I just still feel sick, nauseous, in horrible pain and nothing is working to alleviate that feeling.

I can do this as I’ve been through so much, if you have even read some of the parts of this blog, you will understand that. There are some “private” posts but please feel free to read them and all you need to do is email me :  jewelrymkr@aol.com and just ask me for the Password to the private posts in my “Tears of Truth” Blog. I will send it on to you and I have it there just for the safety of  my family , kids and grandkids.  They don’t need to read all that has happened to me in life. Although my own kids saw some of it and know a lot of it already.  I still want to protect them and anyone else who can still hurt me or thinks they can. This way  I have some control..

Thank you for reading and if you are ever going through withdrawals, make sure, please  make sure that you have a trusted Physician in the plan and someone who loves you there with you while you go through it all!  This is only the near end of Day #1 and for now I cannot see the end in sight.  I pray that I can make it through this without a Hospital or an ER as they know nothing about pain and they treat us horrible….honestly.  I will keep you posted and this diary or journal will be my writings for the next few days or however long it takes. Pray for me..thank you for being here/there for me along the way….love, Suzimage image

Trials of a Chronic Pain Patient…..


imagescanandwill  Hello Luvs,

Have you been betrayed by your Dr? Do you feel like a “common criminal” because you are a legitimate chronic pain patient? Then please read on:

So if you follow my blog at all, you know that my GP, or my General Dr. of the past 13 years just quickly left the practice he’d been working at for many many years. I had an appointment in October 2014. I showed him a letter that I’d rec’d from my insurance company stating that I must go to a pain specialist and that he/she must agree with my GP’s treatment plan; in order for them to continue paying for my pain medications. The letter also stated that If the pain specialist did not agree, they would stop paying for my pain medications on March 1st, 2015. My October 2014 appointment was only for the purpose of making sure my Dr. would help me arrange the pain specialist appointment, send him a letter & call him to explain my extensive and unusual situation. My GP, had been the one person I trusted other than my husband of 18 years and my Psychologist of 15 or more years. I don’t trust many people due to my longstanding history of being abused and being a survivor of domestic violence. That is a story for another day, but you need to know why I feel so betrayed!

Since my car accident in 2002, (*a man ran a red light and I was injured terribly), I have endured so many injuries, surgeries; including 2 pacemakers, along with suffering a Mild Traumatic Brain Injury (3 yrs of TBI rehab), a stroke and a heart attack! Then to end up in 2007,after a foot surgery with CRPS type II. The CRPS II then spread and has been systemic since after my 2nd pacemaker surgery, when they found that my 1st pacemaker had worn a hole right through my pectoral muscle; which then had to be rebuilt.  My excellent Neuro Cardiologist researched RSD/CRPS and found that sometimes an inner surgical wash of “Bipvucaine” (*which he did do) may help stop the spread of the disease. At or about my 6 week post op checkup, I found out that my CRPSII did spread and it is systemic. My pain is very high and I have several other pain illnesses and auto-immune/Neuro autoimmune disease.

I had been to an excellent, well respected and kind pain Dr. He has a good bedside manner and is very intelligent. He tested me in every way possible. I followed through with whatever tests he wanted and I did all that he asked of me. I had several Epidural blocks, trigger point injections, Cortisone shots, Biofeedback and more. I was tested by the pain Dr’s own Psychologist and Psychiatrist. They concluded that I did NOT have an addictive personality. After trying many pain medications which either made me ill or that I was allergic to, we found one that actually worked well for about 2 years. When all else failed, I was offered an intrathecal pain pump; but refused it.  I am a smaller stature person and could not imagine something the size of a “hockey puck” inside of my gut & under my left rib cage forever!.  Finally, I was put on a pain patch for 24/7 relief and pain lozenges for breakthrough episodes. Because I was only receiving pain medicine and needed it in order to try to have any kind of quality of life whatsoever; the pain Dr. referred me back to my GP, who was Dr. Bullach. He  told me that he would be  “the eye in the middle of my storm”. He would prescribe all or most of my medications. I lived with those meds for the first 3 to 7 years. Finally, the pain stabilized and I stayed on the same dosage for the next 5 years.

I started out after the car accident, being in a hospital bed in my home or on my couch as well. I could not even move without excruciating pain. When I got to the point where I was put on the pain meds that Dr Bullach gave me for those 10 years, I was able to do a few things. I was able to get out of the house. Every time I would ask Dr B. to reduce my level of pain meds, he would tell me “No …you let me worry about it. You don’t want to end up back on that couch or hospital bed again.” He told me that “I should not worry and if/when the time came & I was able to reduce my pain medications, he would “put me into the ICU so that I wouldn’t have to go through anymore pain”. He told me that I would “wake up and it would be over without my having to go through feeling any of the withdrawals.” But every time I would ask him to let me reduce the amount, he just told me the same things. I trusted him and He told me that he was “the eye in the middle of my storm”. He told me not to worry about anything! I did trust him, but still I worried.Though I’m very naive, when it comes to medicine because I never drank alcohol, smoked cigarettes,pot, nor had I ever taken any prescription pain or street drugs in the past; prior to that car accident. I am a lay person and had no idea what a good amount or a right amount of pain medication is. I trusted my Doctor for that!  I wish to reiterate that I asked him over and over again, to let me reduce the pain meds.  I acquired RSD/CRPS in 2007, after surgery on my foot. I have it as well as the other car accident injuries and surgeries. Later, the RSD/CRPS II spread to my full body.

So….in going back to that letter that I received from the insurance company, I took it to my ex GP, Dr. Bullach in October 2014. I felt it inside of my heart and soul that very day, that something was not right! He looked me deep into my eyes and said “you need to just see a pain Dr and he will agree with my treatment and its just a formality.” I told him that I was afraid….scared and could I go back to the same pain Dr. that I had known, liked and been to for several years prior. He said I could go to that pain Dr and because I was crying and afraid, he absolutely promised me that he would  call and personally speak to the pain Dr. and send him everything and /or anything that he may need in order to help me get my medications continued and paid for; in order to keep my pain at least at the level it’s been at,so that I could continue to have some sort of a life outside of laying on the couch in pain all of the time.

When we left that appointment in October, I told my husband “something was not right today”….I said that it felt weird and different. I told him that Dr. B. looked at me so oddly as if he wanted to say something but instead he was robotic and went about his business. I took him at his word when he said he “PROMISED to call that pain Dr. and send him a letter with all of the info he might need, in order to help me.

I made my pain Dr. appointment for Jan. 2,2015. But prior to that appointment, I had one more appointment with Dr. B. and had no idea what was in store for me. Two days before the appointment, with no prior knowledge; I received a letter from the other Dr. in the practice, the one who actually owns it.  It was very short and just said something like “Dr Bullach will no longer be seeing patients in our office as he accepted another position at an Urgent Care in another community, Jackson, MI; about an hour away”!!! I was not only shocked and devastated, but afraid and just couldn’t stop crying. I trusted another human being and yet another human being broke that trust! All I could think of was “what is going to happen to me now?”

I went to my appointment, the last appointment with my Dr. Bullach. I spent the whole entire visit for about 40 minutes, just crying. They never examined me, nor even touched me. I didn’t get my blood pressure checked, my heart wasn’t listened to and I have Atrial fib, Long Q.T. and a pacemaker.  The Dr. did nothing that day (he did nothing the prior appointment as well, which I also thought was odd). It was as if he’d just given up on me and didn’t care anymore. He would not give me my prescriptions that he’d been giving me for the past 10 years (although no increase the past 5 yrs). He told me again, “not to worry because the other Dr. in the practice would take care of me just the same and he would prescribe the same meds and everything was going to be O.K”. The medical assistant, “C.” even told me those exact words. She even told me that “if the new Dr. didn’t write the scripts the same way Dr Bullach did, that she would take him into the hallway and explain to him what to do and how to do it”.  They all told me “not to worry” and “my treatment plan would stay the same”.

I went to my pain Dr. appointment on Jan 2nd, and he was surprised to see me. He had no idea why I was there. He had received ZERO information from Dr. Bullach !  There was no letter sent, no phone call absolutely NOTHING came from that office. Finally the pain Dr. decided to call that office and he spoke with the other Dr. there. He came back to tell me that the Dr. I’d trusted all of these years, had “over medicated me up to many many times the normal amount”!! I was in shock as was my husband.  I was angry and afraid!  I suffer from PTSD which is one of the health issues that has rendered me “disabled” since 1998! The pain Dr. and the other Doc at  my GP’s office spoke and  “THEY” decided that I should go to a brusk,  physician who doesn’t believe in pain medication except to detox people! He detoxes everyone and puts them on something else like Suboxone or Methadone as if all  legitimate pain patients with HUGE list of pain diagnosis’ like mine, are just equal to a common criminal. I researched that Dr. and we spoke to the Dr. who owns the practice where my GP had treated me for all of those years.  My research proved that the “detox” pain Dr. does NOT believe in Opiods, Narcotics even for legitimate pain issues, diseases etc. He has 16 horrible reviews on several “rate your Dr.” websites.

When my husband was on the phone with the Dr. who owns the practice where I’d been going all of these years, I could hear him yelling over the telephone while my husband was talking to him. He was angry and yelling loudly. He said that “Federal Marshals came into their practice, and that my Dr. B. over medicated many other patients, not only me! I’m furious to say the least. But I also heard him say that he could no longer see Dr Bullach’s regular patients or prescribe meds for them any longer.

I am feeling so betrayed and hurt and afraid. He left me on a high dose of medicine and gave me no choices except to go to a scary place and have all control taken from me. Let alone, all control taken from me by a brusk, angry type of Dr. (according to many many of the rate your Dr websites!).  My psychologist and everyone who truly knows me, says that is the very worst thing anyone could do to me. I suffer from PTSD and I’m very afraid of many people. I’ve been abused and assaulted and even sexually molested and I was absolutely NOT going into some unfamiliar place and lose all control!

Well, that was then, on January 2, 2015. Even though the pain Dr. wont see me yet, or have anything to do with me until or unless I’m down to a very low amount of medications for pain. I have done it myself and have tapered off of the meds all by myself. In the past I have had a stroke and a heart attack. I have a pacemaker and I have Long QT and A-fib. I have several, awful,terribly painful illnesses but I still am doing it myself!  My “stand in” GP, who sort of “took over” when the other guy got in trouble and left; and who is not happy that he got “stuck” with me as his patient, said that he “got stuck with a mess when Dr Bullach left him with all of these pain patients that the Dr. just kept giving meds to. How could a doctor do this without caring about “US” as real people? Why would he do this to me? I want to live a good life! I’m a mother, wife & grandma and I have a lot to live for. I have a loving and wonderful husband. I’ve not ever done anything illegal or immoral. I’ve never hurt anyone on purpose and I was always so afraid of dishonoring both God and my own father /parents; therefore I just was always a “good girl”. I stayed and grew into a “good woman/person”. I never even took an Aspirin for pain before that car accident, when I would get headaches in the past!  Would he have done this to his wife or his sister? I just will never understand and I truly feel so sad and betrayed by him.

I have been to the Neuro Cardiologist who said that while I was there for my appointment in January, I was diapheretic *(sweaty from tapering the medications), and my heart was in Atrial fibrillation.  Luckily I have a pacemaker. The Atrial fib is just annoying. I’m being paced with a dual chamber pacemaker. I have a cardiac monitor next to my bed which is watching my HR and BP  24/7/365. It’s connected to my pacemaker via some kind of air waves, making the A-fib a bit more safe.  I’m also on Coumadin, which  helps with the blood clots that Atrial fibrillation can cause. I am keeping track of my tapering and I’m doing this all by myself. My husband is awesome and he’s there for me. He’s helping me by reminding & writing it down with me. I will show everyone that I am strong and that I can do this.  If you are not an addict…if you are only taking what is prescribed by a legitimate Dr. and you are a good, person…then why not be able to take what helps you the most and gives you some semblance of a life? Why treat someone like that as though they are a “common criminal”??.  I only went to one Dr. for all of my medication. I’ve only gone to one pharmacy for the past 26 years! and I asked for the past 3 years, for help in reducing the amount I was taking. I am now down to 1/3 of what I had been taking and I will find someone to help me from now on. I will need something for pain for the rest of my life. I have REAL pain illnesses and real diagnosis’.

The above is just about me and my own story. Maybe some of you have been through it? Maybe you know of someone who has a real chronic pain illness? I’ve done some research online, if I refer directly to something specific that I’ve read, I will tell you where I found it….otherwise it is just general research and my opinion mixed together with my own experiences. If I can help just one person who is suffering, then I won’t be suffering in vain. It appears that Opioids can be a safe and good treatment for some people with non malignant chronic pain. From reading about research I’ve found that there are risks and benefits to the use of Opioids for chronic non malignant pain. The potential risks could be abuse and awful side effects. These can be tolerated and/or managed at least. I think if you have tried all of the things like I have tried, including trigger point injections, epidurals and nerve blocks, TENS, biofeedback, and you just get minimal improvement and only for a little while; then maybe it’s worth a try to be considered for long acting Opioids. I also have heard that if you have nerve pain and you are unable to take antidepressants or anticonvulsants, then Opioids are worth thinking about for these patients. They usually recommend that when someone is given these meds, they should be willing to start out with low doses and start out very slowly.  Hopefully their pain will be relieved if they can tolerate the side effects. People like me, who suffer from multiple chronic pain issues and horribly nerve pain illnesses, should be able to have access to any kind of treatment that has any possibility of improving their symptoms.

About 3 years ago, I started telling my GP that I wanted to reduce the dosage of the pain medications I’ve been taking since 2005. It seemed to me that no medication should be continually taken without having full benefits. I asked many times and each time he would tell me that I didn’t want to “end up on the couch in my living room again in horrible pain; or be in the hospital bed again, like I’d been the first 3 years following the MVA. He was the Dr. and I was the patient so I relented and just listened to him and trusted him. A person who is “addicted” psychologically does not ask to have their pain meds reduced because they are afraid of feeling “married” to it. I didn’t ever like that feeling of having to take something or else I would get sick or sicker! That frightens me and tapering the meds, is the best and safest way for ME to do it. I don’t suggest it for anyone else. You need to check with your own Dr’s and do what they tell you to do. But since the Dr. who knew me very well, turned out to be a bad man who betrayed me and lied to me….well…now I’m back to not trusting anyone again! I know that I do not “crave” the medication in my mind. Psychological dependance is confused quite often  with serious substance abuse and the literature is quite confusing. The Diagnostic and statistical manual, edition IV, (DSM-IV) defines substance dependance as a more serious form of substance abuse. This more serious kind of substance use is characterized by tolerance, withdrawal, overuse, craving, inability to cut down, and excessive preoccupation with respect to obtaining the substance. But substance abuse is characterized in the DSM-IV by use leading to failure to fulfill roles/responsibilities, use in hazardous situations, legal problems resulting from use and use despite negative consequences.  Other studies of chronic long term opioid therapy found that all patients who developed problems with opioid use had a “PRIOR HISTORY OF SUBSTANCE ABUSE”! (hence…NOT ME!)..

There is a lack of any true quantity of research regarding the data for long term opioid use. Many Dr’s prescribe opiates for their chronic non malignant pain patients. Mostly because the alternative treatments for long term management of pain most often fail!! From my readings and research lately, I have found that the opiates usually work for awhile but not always so great for long term use. Sometimes they seem to work in long term situations but I guess there needs to be more evidence and research on that idea. As for me, I feel like it worked for my pain, since I have so many places with nerve pain and so many issues with long term pain. I think it should’ve been reduced a long time ago, because I feel a difference already. I’ve tapered down to 1/3 already in 3 weeks and now when I take the meds, I can actually feel it working after just a few moments; the break through meds. Before I started tapering, it seemed as though I had a constant ongoing “everywhere” pain that felt firey. I just continued my prescribed regimen because that is what I was told to do and each time I asked to stop and /or reduce the amount or try something else, I was pretty much told to “shut up”. I wish Michigan, the state in which I live, could adapt the state of Washington’s patient assessment and care guidelines for the use of opioids for chronic non-malignant pain. You can find this at: http://www.agencymeddirectorswa.gov/Files/OpioidGdline.pdf.  In short, it explains how It includes limiting the dose and amount prescribed, using urine testing for illicit drug use and treatment compliance and asking about alchohol, tobacco and drug use history prior to starting any opioid treatments.

Everything I’ve learned and from my own experience tells me that there is a low risk of addiction in naive chronic pain patients. Someone like me who has never smoked anything nor been a drinker of alcohol, has a very low risk of addiction. I think it is downright hurtful and abusive in certain ways, to keep medication that can help someone’s pain, away from them. What about Dr’s who withhold opiate anelgesics? The problem again is that we just don’t know how long they are effective? In (Kalso et al, 2004)  it was proven that opiate analgesics  effectiveness can be sustained for up to 8 weeks. The problem is that I don’t find any studies that prove their effectiveness after the 8 weeks time period is finished. Also it was shown with lab animals that dependance and pain can possibly get worse with long term use of opioid analgesics. Another issue is tolerance, though this hasn’t been shown in a clinical setting. Increasing dosage to maintain pain control is very common. Many animals in studies do show tolerance (e.g. see Chan et al, 2007).

Sometimes something called “hyperalgesia”  can develop when long term use of opioids happens. This really can mess up and complicate things for the patient and the Dr as well. This was proven  and there is evidence suggesting that this may happen in pain patients on daily opiate therapy (Cohen et al, 2008).  Opiate drug addicts and true pain patients are very separate sets of people. I never touched drugs or alcohol and I’ve always striven to be a person “on the straight and narrow”. I’ve never had any trouble with addiction and I was tested during my time as a patient at the pain management clinic. I was tested by their Psychologist and Psychiatrist.  Their tests proved exactly the same as what I had always known to be true; that I do not have an addictive personality.  In the clinical studies referred to above proved also that opiate addiction due to appropriate medical management of pain is rare! Doctors have a hard time because they feel that it’s difficult to know who is faking pain just to get a prescription. However, the person who is lying to get the meds is already an addict, therefore the Dr is not creating one!

As I mentioned towards the beginning of my post today, more research is needed to decide which pain patients would benefit from treatment with Opiods.  I feel that anyone who is tested and proven to not have an “addictive personality” and who also has proven to be a true chronic, non malignant pain patient; with real HIGH pain health issues/conditions/diseases should be given a chance. I believe also if a patient is asking their Dr. to reduce their opioids because they are willing to try less, then the Dr. should listen to them. Maybe they will go through some tapering withdrawals, but nothing intolerable hopefully. In my case its not been fun but now I’m at the last third of the tapering process. I CAN do this and when I’m finished then I hope to find some respectable, reputable pain management specialist who will welcome me to their practice and help me stay on a maintenance dose. I’ve already notice and noted that I can now feel my “real” pain in the places where there are real problems. When I take a breakthrough medication, I can now truly feel the pain lessen; where before when I was over medicated, I felt a constant burning, nagging 6-7 out of 10 on the pain scale pretty much constantly. I was afraid to NOT take what my Dr. prescribed, thinking that maybe it would worsen to a 9 out of 10, which I didn’t want to tolerate. I can now feel as I’m tapering down on my own pain medications, that when I “over do” my activities a bit, then my pain goes up. When I’m laying “low”, the pain seems to be held at bay a bit.  This has always been true but when I was on higher dosage and over medicated by my Dr., I felt a constant, more steady nagging “all over” pain. I can feel a distinct difference in my pain now.  I know that I didn’t and don’t have hyperalgesia, because my dosage stopped going up 5 years ago but my pain did not increase until my RSD/CRPS II, spread to “systemic” in 2013, and I acquired Lymph edema in my left arm and pain/swelling in my left chest area as well.  My pain was semi controlled and I could do a little bit more on a good day just as I could do a little bit less or nothing much, on a bad day. But I still kept wanting to lower my dosage.

This has turned into a mess for me and for my life. I’m afraid that I’m going to be in horrible pain for the rest of my life? Please…anyone with any ideas (**other than “detox” for a me, a person with no history of abuse of any kind) on where I can go? What I can do? Please leave kind comments or email me if you like…thank you for reading my long post today. I hope I’ve helped someone today!

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Broken Hearts,HOPE & Answered Prayers


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Hello Luvs,

I never thought that this day would actually come. I’ve been praying every day, hoping every day for 9 years +, that my family would be back together again.  I married at age 22, in 1984. We had 2 daughters and in 1992 became legally divorced.  I won’t bother you with all of the trials and tribulations of everything that we’ve gone through, but I do wish to tell you a story of “HOPE”.

When my ex husband left in 1991, I was suddenly alone with 2 daughters, ages 3 and 5 1/2.  My oldest had just started Kindergarten and the youngest just had her 3rd birthday. First I cried until I couldn’t cry another tear. Then I toughened up and bucked up and mustered up the strength and courage to do it on my own.  I had felt pretty much and had actually been pretty much “alone” for the most part of those 8 years. On a Saturday night he took me out to dinner and told me he wanted a divorce. We’d met in Late August 1983 and only 7 months later, in April 1984, we  got married.   So, like I said, he told me that he wanted a divorce on a Saturday night. I freaked out a bit, cried a lot and by Monday, I had gone from a “stay at home mom” to a full time Interpreter for the Deaf at a school system.  I thank God for going to College, especially at that point in my life.

That was the end of September and by June I knew that my “dream job” was not going to work. I needed health insurance because I found out that I truly was on my own; for the most part. My parents lived 35 or more miles away, my mother was very ill and they couldn’t babysit or help in that way.  Next, I got a job at a major University hospital. I was an Outpatient clerk III and an Interpreter for the Deaf. I liked my new job and the independence it gave me. But the first few months I could not get to day care on time to pick up my daughters because the latest pick up time was 6:00 pm. I could not get there without an accident, before at least 6:20 pm because I got off at 5:30pm. I got my father to agree to sit in the car with my daughters until I got there and I was grateful for that. Though I never really understood why he couldn’t have taken them just straight across the street to our apartment and let them get their backpacks off and start homework or get a drink? But hey, I was happy with what I got. I was very thankful. I awoke at 5:10 am every work morning M-Fri, and got ready, showered etc. Then at 6:15 am, I awoke my 3 1/2 and 6 year old daughters. I cleaned them up, did their hair beautifully every day with bows and curls and such. We never “looked” poor!  I fed them breakfast, listened to anything they needed to talk about and we left for Day Care at 7:15 am.  The worst was in the deepest darkest of the Michigan Winters, and taking my babies out into the dark of night and the below 20 degree temps most days, or worse. My youngest used to cry every Sunday night and I hated putting her through it but I had no choice. I loved them and they needed someone responsible and loving to care for them.  I didn’t want to lose their respect some day and let them think that I just sat on my rear end eating chocolates! NO!  I went out and as hard as it was, I got a full time job and for awhile even went back to College to better myself.

For years I had no child support or “on” again and “off” again child support.Finally, when my father in law started paying it, then it came regularly and life became just a tad bit better when I knew that I had  enough to get by for 2 weeks until my paycheck came; and with only usually $20 to spare. I got food stamps and Medicaid insurance for about 6 months, until I could get my own insurance and until I made only $80 per month too much to get food stamps. I was so proud though!! I was soooo proud when I made $80 a month too much to get the $250 worth of monthly food stamps.

So life went on…..much happened and it was hard for us. We all survived and I remarried in 1997 on Valentines day. Then to make this story more about the good than the bad, I have to tell you why I named this story about “HOPE”.  In 2004, my oldest daughter became estranged from us, her family at age 18. She had to find her own way and figure some things out on her own. It broke my heart and I’m pretty sure she felt that her heart was broken too. But days turned into months and then years went by….and by…and by…..

I prayed and I hoped and every Christmas that went by, every Birthday that past and each Mother’s day that came and went, I cried and prayed and cried some more. I would listen to songs and look at photo’s that reminded me of  much harder days but days in which I still had hope, in many ways.  Don’t get me wrong, I love my husband of now 18 years. He is the best thing that ever happened to me & us in  life, other than having my girls. He is my soul-mate and I love him and he loves me and we are a team.

Nine years ago or more, when all of that happened, I had bought a necklace that was gold and silver and has the word “HOPE” on it. I swore to wear it until my oldest daughter and I were together again.   So much more happened throughout all of those years, but that is not for me to write about today.  Today I am only looking forward and not backwards. Finally, today, I can take off my HOPE necklace if and when I so choose, because my prayers have been answered.

I had lunch with a very old friend in August, her name is Janet.  We had our first baby girls only weeks apart and became great friends.  She moved an hour and half away and then I moved and then I got divorced and then her husband passed and life kept changing for us. But through it all we stayed friends.  She met me for coffee one day in August 2014. I told her that I was “losing hope of ever getting back with my oldest daughter”.  I told her how much I love my daughter and always have and always will. I told her how much I wanted her in my life and how we all missed her so much. She told me to “just call her”. But I was just a bit nervous to call out of the blue like that. I mean I had sent notes, letters, gifts etc over the years but then I sort of “gave up”….not on her…but just on trying to contact her again.  So she told me “why not try and text her and just tell her how you are feeling?”…I thought about it and then I did it the very next day!

I am here to tell you to NEVER give UP HOPE!! I texted my daughter and I told her that “I love her” and I told her that “I was thinking of her and hope she was doing OK?” She told me she was “tired of being pregnant and due in a couple of weeks with her 2nd child.”  I had heard that she got married 5 years ago, but I had not been invited nor ever told about it until my cousin in AZ told me the day afterwards.  I was heartsick and heartbroken again.

So…back to the good stuff!  I texted her and she texted me back. I asked if I could have a photo of my granddaughter who was 20 months and she sent me 5 pictures! I was ecstatic!! She said  that she “couldn’t choose” just one single photo…and I was glad for that! Then I asked if she might let me know when the new baby is born and also send me a photo. She did just that!! We started talking then more and more and texting and one day she invited me to come over after she’d gotten home for a few days from the hospital and having her 2nd C-section (she had 2 C sections, just like me)!

Her mother in law was there and my daughter and I hugged and we laughed and we cried. Her mother in law was so nice and funny and I was put at ease right away. This was the beginning for us again. A chance to start new. We have had over 6 weeks now of spending time together. We talk daily and we see each other almost 4 times a week if not more! Sometimes I sit in the car and let her go in and get her errands done, so she doesn’t have to take 2  babies in with her. Other times she comes over to the park near my house or to my house and we have a tea party! I got down my girls’ old small table and chairs set and cleaned them up.  We had a tea party and she and Olivia and I had such a beautiful time.

I will always include her in everything because I remember my mother always took the girls into her room and left me sitting on the couch by myself after I had driven 45 minutes to their house!  She always wanted to have “girl talk” with them “ALONE” and I was not invited. It hurt my feelings but I always figured that as long as my girls were happy, then I was OK too.  But I really enjoyed all of us having our tea party together, even little newborn baby girl was there with us, sleeping…..but feeling the good feelings in the room.

On Monday of this week, my oldest daughter and I drove an hour to her younger sisters house, my youngest daughter and her husband live about an hour from here.  My oldest daughter and I only live about 4 blocks away from each other now! I love it so much!  So anyways, my youngest daughters, 26th birthday is next week, so we took a picnic lunch and went to their house and to the park and went for a little walk.. This was the first time we’d been together in almost a decade! It is a wonderful feeling!!!  I almost forgot to tell you that a week or two after we started seeing each other,  my husband and my oldest daughter saw one another; they hugged and he got teary eyed.

Life is so much better when you can let go of the past and all of the hurts, big and small.  If you can let it all go and start over and refreshed with a new found way of life and have no need for hurt or revenge or anything but kindness and love and a sense of family…that’s when life will turn around!  When I could finally stop and think and let go of all of the old “junk”, that is when my “HOPE” came true and my life is so much more fulfilled now.  Of course there are times in life when one might have been damaged physically, verbally, emotionally and worse. Unfortunately, sometimes in those cases, it’s not always just a matter of moving on. Sometimes just forgiving in your heart, can lessen the load and it can help you move on just to have forgiveness in your own heart. We cannot force anyone else to think, feel or act in any certain ways. We can’t force anyone to feel how we want them to feel.

I am in chronic pain from RSD/CRPS , RA, DDD, SSS, OA, Dysautonomia/POTS/NCS and many other health issues.  I was in a MVA in 2002 and have suffered through 12 surgeries and alot of pain. I have had a heart attack, a CVA (stroke) and I’ve gone to many Dr’s visits. I am through it and sort of on the other side now; and couldn’t be happier, unless of course the pain was gone.  But it’s a lot easier to bear when you feel loved and you are being more loving yourself.  I am so happy that my family is together again.  I will never again hold onto anything bad in my mind, heart or soul.  I give it up to God and I am going to enjoy life as best that I can.  I will have my days in pain when I cannot do anything, but I will have the love of my daughters and granddaughters.  I love them,  my husband and their husbands Thank you for reading my story and please…NEVER give up HOPE…..it does come, but in “his” time, not in ours.  We don’t know why?? But God does know what he wanted me or all of us to learn first.  Thank you again… also thanks for allowing me  the pleasure of posting a few photos from our day at my youngest daughters house and a few others too.

One more thing before I sign off for today.  I wanted to apologize for being away from my writing for a whole month. I try to write weekly or bi-weekly.  As you can see from my story above and the photo’s, I was just very busy this month; allowing things to happen naturally and waiting for the best time to tell you this wonderful news!   imagesabc

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Memories Are For Keeping….


The girls having a real Scottish TEA PARTY with their friends…at our house
My darling girls in matching outfits at the Toledo Zoo
Jessica, Goofy, Momma and Amy at Disneyworld Florida
Momma and her girls…Jessy 6 and Amy 4!!
Craig and Jessica Laughing with a goat at Disney Animal Kingdom!!

Craig doing the Pumpkin Carving with the girls! An Annual affair!!
My girls and me in Indian Guides at a Campout!! (My girls are on my lap!)
Amy and momma when Amy was on Jumprope team & Momma was coach!

 Hello Luvs,

   I’ve been sitting here today reminiscing about my “mommy days”.  I know that I’m still a “mommy” and that I’ll always be a “mommy”…but there were those “good old days” when I got to put my mommy-ing skills to work 24/7 and I loved every moment of it!! I loved it from the C-section (*well, OK maybe I didn’t really enjoy the surgical parts…LOL…but the outcome, I must say was pretty awesome)!

     I did so much with my girls and for them that I cannot even remember all of it to write it down here. I just did what any Momma who always wanted to be  “Momma” would have done! I really and truly tried to “make up” for the fact that their dad was in and out of their lives (mostly ‘Out’) and that he moved 1,000 miles away and told them the day before “Fathers day” at one of Jessica’s baseball games! OH Yes…I forgot…both girls played on T-ball, and girls softball at our church and/or at the Plymouth/Canton girls Softball league for several years running or about until the 3rd grade! After that it was dance lessons again and the other things I mentioned above. They always had CCD or “Religious Education Classes” on Tuesday nights! From Kindergarten through the 8th grade they did that and at the beginning I also taught Kindergarten CCD classes.  Tuesday nights or “CCD” nights were fun because we didn’t have much money and that was the night I got them at daycare as quick as I could (but I always did that!!!) and we popped over to Wendy’s, McDonalds’s or Taco Bell!! Then I’d take them over to their Religous Ed. classes where they stayed until about 8:00 pm or so. After that, we went home and got ready for bed, watched a bit of TV in my bed together and then I’d read to them each together or separately (whatever they wished) and I sat on their toybox and sang songs to them nightly. Some of the songs that I sang were: “You are My Sunshine”, “Mockingbird”, “Daddy’s Whiskers”, Adelweiss and a few others! I loved it and lived for it actually!

     After a long day working at the University of Michigan Hospitals in Ann Arbor, MI;*(about a 35 minute drive from our apartment in Canton, MI…) I would pick them up at day care and we would then go to our apartment just across the street. I would make dinner, eat dinner, clean up from dinner and never asked them to help really. I don’t know why? I should have taught them better and showed them how to be more helpful but I wanted them to be “kids” as long as possible. To me that meant having fun and doing their homework and not cleaning and/or helping me cook etc. They have plenty of time in their life for doing domestic services and I just wanted them to be happy and have a nice time after they finally did get to come “home”! I guess now I would do it differently if I had known then, what I know now! LOL….I should’ve taught them and showed them how much I had to do and that we were a “team” and we all should pitch in and help. I wish I’d done that and for that I admit that I was wrong! But still, that doesn’t make me a “bad” mother!! I tried to be the very best mother that I could be! I had to really be a mom and dad for many of those younger years.

   It’s funny because I never liked carving a pumpkin so much. I enjoyed the experience of baking the pumpkin seeds and watching my girls have fun with it. I loved helping to draw the faces  on the pumpkins, with the girls’ faces beaming!  To me, that was the fun part of it but the total experience was a Fall tradition. I just always thought it was more of a “dad job”. My girls wouldn’t have been able to have the experience during those several years when their dad was nowhere to be found. They wouldn’t have been able to have that one Fall tradition that I just didn’t have the strength in my arms/hands to do…the one “dad thing” or single parent thing that I just could not do by myself!  Luckily, I had a good friend, Jeff at the time.  He was so kind to come over and carve a pumpkin with the girls at Halloween time! I still remember those times and I appreciated his help so much. Another thing that I had a hard time with was teaching the girls to ride their “two wheeler” bike! I would grab anyone and everyone to help me run behind them and along side of them because I was so afraid of them falling and knocking their teeth out or something! But we got through all of those times!! We even got through a couple of Christmas’s when I had hardly any money to buy them gifts and I couldn’t let them down!

    What I did those years was really use my imagination; and it paid off in the end! They say those were some of their favorite Christmas childhood memories now! One year the church and the Domestic Violence Shelter gave me quite a few toys, dolls and games to give them under the tree. I was quite appreciative and tried to “pay back” the shelter especially, when I got re-married and re-established into a more normal lifestyle to where I could give back!  Another year that I remember was when they wanted all “baby stuff” for their dolls for Christmas! How was I going to afford real baby seats, clothing and diapers etc?? They each had their favorite dolls. Jessy had “baby dear” and Amy had her “blonde baby dear” or her “Mary” doll.  Here’s what I did: We came home from daycare/work one night in November and their favorite dolls were gone but a note from SANTA CLAUS was left for them! It said that He “had taken their dolls to the North Pole to fix them all up nicely and he would bring them back on Christmas eve”! They were filled with surprise and wild-eyed childlike excitement! It was spectacular! I was so hoping that they wouldn’t be upset or afraid that Santa had come into our home when it wasn’t Christmas eve. I had left such a *magical note with kind words from St. Nick telling them exactly what he was doing and that their baby dolls would be back, better than ever! They trusted Santa, of course. I made it a good thing and so they took it as just that!

   When Christmas morning came it was the best ever! I had gone to the resale shop and gotten: bibs, bottles, baby seats (one for each) and baby diapers, blankets, booties etc.!!! They were in awe when they woke up and saw THEIR own dolls back from the North Pole from Santa’s House and workshop. Their baby dolls had new clothes and bonnets on their heads. They had their ears pierced (I had put little earrings in the dolls ears), some baby items and they were sitting in REAL baby seats!! Oh it was really special to watch their excitement. I feel excited and so happy right now just thinking about these memories! Thank you for allowing me to share them with you! 

 

Tears Of Truth…..My Story..


pie chart of causes of traumatic brain injury
pie chart of causes of traumatic brain injury (Photo credit: Wikipedia)

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      I am an Interpreter for the Deaf, that’s what I went to a 4 year university to become!  I worked at the University of  Michigan hospitals as a secretarial “float”.  I  was paged whenever a Deaf person came into the clinics, hospital or E.R. and  I  would go to them to aid communication between the Doctor and patient.  

    Then in 1998 my *(see below)*abusive family got worse when I confronted them!  Depression and anxiety set in, although,  I finally felt safe with my new husband.   I started having Flashbacks and nightmares.  I  was granted  SSDI for CKDII,& PTSD (Chronic Kidney Disease stage II and Post Traumatic Stress Disorder).  I was going to try and go back to work in Fall of 2002, but that plan changed abruptly on Aug 11th, 2002.   A man arguing with his wife, ran through a red light and totaled our van and  my body!   I suffered:  an MTBI *(mild traumatic brain injury) & 3 yrs of TBI *(traumatic brain injury) rehabilitation.  I was horribly injured and in so much pain!  I had been knocked unconscious for about 20-30 minutes.  I was hurt in so many places and weighing only 90 lbs didn’t help me at all!  Both of my knees and both of my shoulders were torn.   My right  biceps tendon tore right off of the bone on my  right side. My right ankle and my right foot were injured.  My ears suffered nerve hearing loss (*I now have 2 hearing aids) and my eyes suffered some nerve damage as well.  Many lower back & neck disks were/are herniated, ruptured and bulging.  As time went on I ended up with two frozen shoulders.  I went through 8 yrs of Physical therapy, 3 yrs of  TBI rehab, and underwent 9 surgeries; including  2 screws in my left shoulder and an intramuscular pacemaker, twice in 10 years now.  My first one was placed inside of my pectoral muscle because of its vulnerability inside of my chest at such a low weight.  But 10 yrs later they did plastic surgery to rebuild my pectoral muscle because the pacemaker had worn right through the muscle wall!   

   Sadly, in 2004, my 18 yr old daughter left home because of reasons I won’t write here. My heart was literally broken! I had a heart attack one week after Mother’s Day, in 2005.  The cardiologist said that I was “his first case of “Broken Heart Syndrome“…my daughters were my life and I raised them 98% on my own! I had left my ex-husband, the father of my two girls, after an 8 year abusive marriage, in which he also cheated on me  several times.  He was an abusive Sheriff’s Deputy who was fired for “hurting another girl besides me!” He was given a jury trial and found “Guilty” of “Obscene conduct” and “Indecent exposure” (which were truly lesser charges than what actually happened!) . His punishment ended up being that he can never be in law enforcement again.  He also couldn’t see our two daughters, then 31/2 & 6 years old, without a supervisor approved by the court. He was abusive towards me and to our Rottweiler, ‘Bully boy”. He pushed down our then 3 year old little girl, because she “wasn’t hurrying fast enough”.  He pounded my oldest daughter on the top of her head when she was in tears over him kicking our family dog in the head and neck, as she cried “daddy don’t hurt Bully Boy”! While hitting her on top of her head, he said “I’m the dad and I can do whatever I want”!! He left his service revolver out on top of the window sill and on the back of the toilet seat! When my youngest was 2 years old, she brought it to me saying “Mommy, what is this for?” Needless to say, they took his guns away from him and he was punished after that incident and then swearing to “shoot all of us and himself!” There’s so much more…too much to write here except for one thing that sticks out in my mind so sharply.  During the time when my ex-husband could still see our girls, before he was convicted and found “Guilty” and only allowed supervised visitation; he had taken them for the weekend. They came home and told me that “daddy had a girl in his bed”. They told me that my youngest who was then 3 years old, had vomited in the bed that they shared in the apartment he lived in, that was attached to his parents house. Our oldest, who was just 5 1/2 yrs old, went upstairs crying to him and knocking on his bedroom door. She was crying and saying that her little sister had thrown up in their bed. He told her to “shut up and leave him alone”!  She was 5 years old and had to try to take care of her sick 3-year-old sister, while trying to clean up vomit on her sister and the bed !  Needless to say, that was their last visit with him unsupervised. We had to go to the Domestic violence shelter and we had interviews with Child and Family Services. They sided with me and recommended “supervised visitation and anger management classes”.  The judge agreed with their recommendation. He was embarrassed and angry, therefore he moved 1,000 miles away barely ever seeing his daughters. He was angry and wanted “revenge” on me for “taking away his kids”.  I did not do that though;  he did it to himself and then the judge ordered it!

Atrial fibrillation
Atrial fibrillation (Photo credit: Wikipedia)

  I was never ordered to do anything but I still sent him photos, invited him to public school and other events in their lives and his parents as well. I took the girls to visit his parents who lived about an hour from us, here in Michigan at least once every month and each Christmas day they went to see them from noon until 7:00pm! I even drove them to and from their home which was an hours drive from our apartment.

   Later,  in 2006, after my  heart attack, I acquired “Atrial Fibrillation” *(Atrial fibrillation is when the heart muscle quivers and shakes, spitting out little blood balls or clots which can cause strokes) and therefore ended up suffering  a CVA *(cerebellar Vascular accident) or “stroke” from the A-Fib! I had already been on blood thinners but apparently I needed a bigger dose!     It’s been since 2004, & my oldest daughter has never wanted to see me or speak to me.  In 2007, I texted her and said “I Love you and I’m thinking about you.” She called me back and asked me to meet her and we did. We met twice and had lunch, but it did not work out very well. Another time she texted my cell phone and it was 2008 or so….she texted “Suzanne, why do you think people care about you?  THEY DON’T!!”….I fell apart once again.      

    I recently had my 9th surgery this year in February 2013….a new pacemaker and a rebuild of my Pectoral muscle!  Then on August,the 5th, 2013, I’ll be having my 10th surgery, oral surgery!  I found out that my oldest daughter got married in Oct, 2009 and to the same boy she wanted to sleepover night with while still in High school.   That was the episode that led up to her leaving home, because I said “No” (that she could not have my permission to sleep over at a boy’s house while still in High School)! I also found out that I  am a Grandmother to a little girl born in Nov -2012! Her name is Olivia, and as of this month (July 2013), she is now almost 7 months old. Again….still…I am heart-broken!  All that I’ve ever wanted is to be a Momma & a Grandmother!  I was/am a good mom..my ex-husband ran away “to find himself” !  But I’m the one who stayed and raised our daughters alone.

    I’ve lost so much…but I thank God every day for what I do have : my youngest daughter, now 241/2 & living in her own appt. since August 2012!!! She graduated last Summer (’12),with her Master’s degree in”Library & Information Sciences”.  She has her own apartment. She also has a wonderful Academic Librarian job with a tenure track etc. I have had the most wonderful husband, for the past 16 years! He’s the love of my life and my soul-mate!!  He has been an elementary school teacher for 35 years and he is the best teacher and the best husband ever!

    This is my story..PTSD that continues and never seems to end because my father and brothers  still treat me in an abusive manner.   Add that  I’m in chronic intractable pain 24/7 since that MVA in 2002!  I acquired “full body” RSD/CRPS  a painful progressive Neuro-autoimmune disease, which causes burning nerve pain similar to the feeling of being “on fire”!  I have OA and 2 Rheumatologist’s have said that I have RA  *(one of them gave me an injection kit for “Humira” and wanted me to start taking injections.  Luckily I didn’t ever start taking them because I found out that I have an IGA deficiency and that RSD/CRPS is an autoimmune disease, therefore that medication could have made me much worse off!), but my PCP and I aren’t quite sure, or really don’t think so at this point! I have Myofascial Pain syndrome, Fibromyalgia (which I’ve denied for several years, but am finally coming to terms with it).  I have Dysautonomia which is  my Autonomic nervous system dysfunction or failure.  It means that all of those body systems and things that our bodies do without thinking about it, don’t work for me.  This includes: body temperature, respiration, blood pressure, digestion, sleep disturbances, memory problems, heart arrythmia’s and more.  My brain stopped telling my heart what to do, which is part of it also and one of the reasons for me needing a pacemaker!  I also suffer from POTS (Postural Orthostatic Tachycardia Syndrome) and NCS (Neuro-Cardiogenic Syncope), CKDII (chronic kidney disease stage II, due to tubular interstitial nephritis), Hypogammaglobulinemia ( an Immune deficiency), Sick Sinus Syndrome, Coronary Spasms, Atrial Fibrillation, MVP, TVP, (Mitral valve prolapse /tricuspid valve prolapse), Chondromalacia Patella and Patella Femoral pain syndrome, Asthma and  other diagnosis’ but just too much to keep writing for now.  

   All I pray for daily is that my oldest daughter will come back to me and to us.  I pray that one day I will get to hold and see my granddaughter, because I already love her! I am blessed with a wonderful and loving husband. Also, I have God who is my Lord and Savior and it’s because of his love that I can never give up.

**(from above…In another post, I will explain more about my life and growing up in an abusive and highly Narcissistic/abusive home, where I was starved, poisoned, weighed weekly and given punishment/reward dependent upon my weight.  I was also abused in just about every possible way by almost  everyone who was supposed to love me; and those who I was supposed to be able to trust!)

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