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    My name is Thomas Lavender, aka Tom Lavender, and I would like to share some of my story about me and being diagnosed with chronic illnesses. Of course, I went all through school without having a chronic illness at all. I even spent 4 years in the Navy and happen to be a war veteran.(1987-1991) Anyhow, I have had other jobs, but it was while I was working at Georgia Southern University that I began to start urinating more often all of a sudden. Being a custodian, it usually was not hard for me to get to a restroom, but I did not know what all was going on with me. I was losing sleep because of it as well. That was in 1997, but I had been on the job since the Spring of 1995. OK. I finally went to see a urologist, and he was stating the prostate must be inflamed. That led to me being put on antibiotics for 2 months.(without improvement) OK. I was put on another antibiotic for 2 more months.(and not getting better) Regardless, I was told to take another one for 2 months as well. I think I stopped prior to 6 months because I became aware the problem must not be the prostate after all.(especially at my age back then) I am currently 46 years of age. Anyhow, I ended up having a procedure, cystoscopy with hydrodistention, done and got told I was dealing with a medical condition/chronic illness called interstitial cystitis.(IC) That was something that I had never heard of. It was still being called a womens disease back then. The statistics were stating it was 90% female and only 10% male, but I have seen 70% female and 30% male by now.(if not 60%-40%) IC is a bladder disease that causes the urgent and frequent need to urinate and/or pain and pressure. By the way, I don't have all the pain with mine. Of course, we, the people with IC, are not all the same. I was put on Elmiron, the only FDA approved medication for IC. It was supposed to work wonders, but what works for one IC patient may not help another one at all. I never got impressed with Elmiron, but I keep getting told to keep on taking it.(and still got some) Of course, I have tried other medications as well.(without being impressed) I am currently taking an overactive bladder medication called " Myrbetriq", and it has started to do some good. (a little less frequency) There is still no known cause or cure now. I kept on workingt with IC, but it wasn't always easy to do. I am on different IC support groups across the internet as well. IC usually accompanies other conditions such as irritable bowel syndrome, chronic fatigue syndrome, and fibromyalgia. Also, many people with IC do have sleep deprivation, but I finally got to where I was getting proper sleep once again. I ended up having neck surgery in March of 2010. That was because my legs starting hurting and not making proper strides while off work one day. Of course, I did not understand it at first. I went on medical leave and finally learned, by MRI, that I was having cervical stenosis. That led to me having neck fusion at C4 and C5. (and then neck brace for 12 straight weeks) OK. I finally went back to work, but I started having more pain than previously.(and legs messing up sometimes again) The neurosurgeon finally got me down to 4 hr, as in half shifts, at work.(then 6 hrs later on) OK. I finally went back to full shifts once again. I was coming home in so much pain and fatigue to where I was in tears sometimes. It seems that I ended up back on half shifts. Regardless, I actually had a few falls at work.(and may still fall some) That was because of the pain and tiredness and my legs getting weak on me. I was told, in November of 2010, that I could not go back without the neurosurgeon given the "OK" for me to. I never did. I ended up having another MRI a few days before Christmas that was showing degenerative disc disease, DDD, in my lower back. By the way, I wanted to have that done. It did not impress me to learn that, but it was still good to know. I am a chronic pain person because I never wake up without any pain at all. The pain is not always the same, and I can take this and that. Besides, I am actually using a heating pad right now. I went out on retirement disability; therefore, I still have the insurance now. It does not pay half of what I used to make, but I am still waiting to get a hearing in front of an administrative law judge because of being denied regular disability, which I first applied for over 23 months ago, more than once. I also have a tendency to get tired more often. I am not always tired, but it can hit me to where I feel like I can hardly stay awake all of a sudden. That must be the reason why I rarely get through a single day without taking a nap any longer. Being in pain every single day can make a person feel burned out to begin with. Many of the people in the IC support groups that I am on post about being tired and exhausted and needing a nap once again. Some actually have more medical conditions; therefore, it can make sense after all. I have got much love and respect for any individual with a chronic illness and/or disability. Besides, we don't necessarily enjoy having chronic medical conditions and all the doctors visits and medications, but life goes on. God is always good. We don't always understand. I just get by. I often walk with a cane as well. I will let that be all now.
    Like · ·Unfollow PostFollow Post · 12 hours ago

  • #2
    Hello, Mr. Thomas Lavender aka Statesboro! It's so nice to see your story in one post. I remember many parts as you've traveled through this adventure and you're an inspiration to keep on going for so many. I'm sorry you still have so much pain. I can imagine how exhausted you must feel. It's also terrible that you still have a fight ahead of you regarding your disability insurance. I haven't caught you on ICN lately, so it's great to hear from you.

    Prayers for your healing....that you'll get some relief from your pain, and that you'll get that hearing soon with a judge compassionate enough to see your needs.

    Ginger
    Never heard of IC til suspected....Never knew so many suffer from it. Praying for a cure. I've found answers...so can you...keep the hope.

    11/2007 IC Symptoms began during recovery of surgery for bladder susp & hysto: painful/urge/freq urination up to 50 times a day, pain walking, even water hurts.
    8/2009 Susp IC; 1/2010 Treatment began; 2/2010 Diag PFD, PT, Surg remove mesh; 5/2010 Surg, 2nd bladder repair, vag vault/sm int prolapse repair, IC confirmed in surg; 7/2010 Diag Candida Esophagitis, Gastritis, Diviticulosis, Gallstones,
    8/2010 Surg gallbladder
    TREATMENTS (updated 4/15)
    IC Diet since 8/2009 (Able to vary 4/15)
    Heparin/Lidocaine/Bicarb/Kenalog Instills 1xDay
    Aloe Vera Capsules, (2) 2xDay, Loratadine 1xDay
    Pantoprazole, Prelief, Pyridium up to 3xDay, Premarin Cream 3xWeek
    *DISCONTINUED since feeling better: Celexa 10mg daily*, Fiber supp*,
    Gabapentin 12/2011 worked well *, Macrodantin 100mg after instill*, Probiotics*, PT-PFD*, Valium Vag Suppositories: Cyclo/diaz/lido, 10/5/62.5mg *
    PROB MEDS: Elavil, up to 50mg 1/2011 ret&hbp, Urelle ret, Vesicare ret

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    • #3
      You've had such a horrible time and I think of you often.

      Sending healing thoughts your way,
      Donna
      Stay safe


      Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
      Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

      Have you checked the ICN Shop?
      Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

      Patient Help: http://www.ic-network.com/patientlinks.html

      Sub-types https://www.ic-network.com/five-pote...markably-well/

      Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

      AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

      I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
      [3MG]

      Anyone who says something is foolproof hasn't met a determined fool

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