Dr. Patty's Pain Journey Of 31 Years (Part 3) Updated July 19,2014

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    Dr. Patty’s Pain Journey Of 31 Years (Part 3) Updated July 19,2014

    Dennis and I decided to get married July 2000. He is a wonderful man. I call him an angel without wings!! He loves me so much that he cares for me every day. Due to the osteomyelitis, at one point I was bedridden. I am no longer stuck in bed. Dennis brought me my meals, bathes me, etc.

    I figured out how to adapt to using a computer almost 10 years ago. Since I am unable to sit up straight when using the computer, I balance myself on my right elbow, have pillows between my knees, under my elbow, in back of me and I have a keyboard on my lap to type. I had a laptop, but it finally died. I am attempting to use a desktop because it is not possible to get another laptop right now. I am adjusting toward using a regular mouse. I now have multiple pain diagnoses and problems that have come up due to my positioning problem.

    I have neurogenic bladder, so I had a Foley catheter to urinate. Within the past several years, I trained myself enough to not have the Foley. I have a Hickman Catheter to get my pain meds and antibiotics. I have had Atelectasis (where my right lung doesn’t expand well) so I was on oxygen. I am vitamin deficient. I lost weight on my own (over 200 pounds) because after the reversal of the stapling and bypass I gained the weight and some. I now work in my recliner as a pain patient advocate and help others suffering from severe pain.

    I am very happily married to a wonderful man who says he takes care of me because “it is a labor of love!” I was unable to cook, walk, etc. He brings me meals, cleans me up because it is too difficult to go in the shower, goes to the store, pharmacy, drives me to the docs when needed, and the list goes on. SOME OF YOU HAVE ASKED WHAT OUR SECRET IS TO STAYING SO HAPPILY MARRIED. WELL, IF SOMEONE CARED ABOUT YOU AS MY HUSBAND DOES FOR ME, THAT IS ENOUGH.

    He also suffers from chronic pain and is disabled. So, this is my story, actually the short one. I hope this helps anyone get an idea of who I am and what I do…I will go out of my way to help another person in pain…because I never want anyone to have the feelings that I had. God is now bringing us together. Things are done in God’s timing not ours!!! Every morning I wake up and look at the things that I am blessed with, not the things that I don’t have!!!

    In August, 2008, I final settled my work comp claim that was 26 years old. If any of you have an insurance company that screws you around “Don’t Give Up”. You fight until it is settled. If you have any questions to ask, feel free to email me @ drpattyverdugo@cipay.org. Remember, there are many of us in this world who are suffering. We need to get together and help each other!!

    After my settlement, (which had a lump sum to buy or renovate a home that we already had), we decided to leave the hustle and bustle of city life. I had always wanted to live in Las Vegas, but somehow we were looking at homes in another area of Nevada. The first home that we found was in Pahrump, NV. We fell in love with the area, picked out our tiles, floors, etc. and went back to California to get ready to move. When we got home, we got a call that the builder was not going to finish the house (they went belly up). We were forced to come back to Pahrump to look again. We set up times with different builders to see who can do what for us at the best cost. There was one home that was already finished.

    We would have to renovate if we moved to make it accessible for one (Possibly 2 in the future) people in a wheelchairs. I believe everything happens for a reason. Right?
    After seeing different properties as well as the builder for one of our homes to be, it was narrowed down to 2 places. A bidding war ensued and the place we live now is the one we picked. It is 3000 square feet (enough for wheelchairs, walkers and other mobility aids). We have 3 bedrooms (one for guests and should one of us need a live in nurse, we have the third bedroom. Although the house was an open concept with a single story, we needed some things done. We had ramps but in, one door widened, redid the master bath, etc.

    We love it here, but didn’t know what we were going to be up against with the medical community here in Pahrump. Also (we recently were told this), that Nevada is one of the top three states with doctor’s being afraid to prescribe. Arizona and Florida are with us. It has gotten worse since moving here 6 years ago. After searching, we did find a wonderful doctor in Las Vegas who understands our pain.

    Last year, my pain condition worsened several times. I thought that the disease that I have osteomyelitis of my spine was just going to be that (and I would have to learn how to deal with it day by day. I developed the osteomyelitis in my right hip, index finger and heart. Every time I have any kind of infection flare up (the osteomyelitis he responded a is staph based but not MRSA), I have to go to Las Vegas to be treated. I can’t tell you how many times that I have been in the hospital in this state where my medications we cut while in the hospital (because of fear there also). We have also had problems with pharmacies (one of our long term ones closed with no note or anything. We have a new “mom and pop” pharmacy that was built last year and we don’t have any complaints.
    Last year I also found out that I had mitral valve reflux. Like you, I deal with my health problems (as does Dennis) one day at a time.

    Today (2014), Dennis and I just watch out for the signs and signals of a new flare up of the osteomyelitis to try to catch the problems before they become life-threatening. We are now having to learn all over again. Unfortunately, the rules changed on us. We now know that even after the initial years of getting the infection, the staph still can move into other parts of my body. We used to have certain symptoms that we looked for (i.e., profuse sweating (worse than normal because I sweat a lot just from having the infection on a day to day basis); increased pain in my spine and legs and then fever of over 103 degrees).

    The rules now are severe bone pain (anywhere), low grade to no fever at all and of course profuse sweating. Most of the time I have to go to Las Vegas to be treated in the hospital on IV Antibiotics and then after the doctors know which bug it is (even though it is assumed to be staph), then I can come home and do my antibiotics. (which is extremely expensive but cheaper than a rehabilitation hospital and without the power struggles. Yes, power struggles! I have had several problems going into those places to get my antibiotics. If the facility knows my background (educational), sometimes it makes it worse for me.

    I have 2 wonderful examples that I will share with you. A few years back, I was admitted to a facility just for antibiotics. They screwed around with my medications because “they didn’t feel comfortable” giving me my medications like I take them at home. I am on Benadryl through my porta-cath every 4 hours. Over time, we found out that taking that with my oral pain medications helps to reduce the opiates. It is strange, but if it works, you don’t fix it! During this hospitalization, my port was removed (because of the infection) and a PICC Line placed. When I was ready to go home, they removed the PICC because they said that I couldn’t go home with it due to liability issues. They knew I took IV medications at home, but brushed me off. It took several months to get a new port.

    Example #2: This issue happened last year around Halloween to Christmas. I would not like the doctors to take out my port until they knew that is was infected in itself. The facility was aware that I had a port and I asked them to change the needle and dressing once a week. The first weekend I was there, it was done. Then after each additional week there, I asked several times because they were using it. Nobody listened. Once the Huber needle and line started to go bad, they took off the dressing and saw what was underneath. Because of the lack of care (they said they didn’t have the needles to change them˗˗which they could have ordered or asked Dennis to bring some from home), they never got back to me.

    The port was half in and half out of my chest. It required surgery to get it out and close the wound and later to have one put back in after I was cleared from having the heart infection. There was no excuse for that! Yes, we did file a complaint with Medicare! They too didn’t want me to leave with a PICC Line in. Well, this time I did. It took a long time to get a port put back in. One of the facilities in Las Vegas put one in my arm (in the hopes that the perspiration during the summer would not go around the port. Well, within 3 weeks, it came out. My skin is very thin in areas because of my weight loss. I went back in the hospital about 2 months ago and we started the whole infection thing again!!

    I want you all to know that I too suffer the same problems that most chronic and intractable pain sufferers go through when it comes to hospitalizations. Most of the time, I get cut down or off some of my medications. There is no reasoning with hospitalists (most) who don’t know me well. I can joke around, work on the computer, joke with the nurses, etc. even when my pain is at a high level. Nurses and doctors who are not familiar with chronic and intractable pain sufferers think that you should be crying bloody murder and writhing in pain when in fact most of the time we are not. Most pain sufferers who have had their illnesses a long time know how to make that happy face and go on with life. I have found over the years that you can’t educate people who do not want to learn!

    I keep having to update and add more to this journey it seems once or twice a year (ugh)! We are now in July 2015 and I am back to add on again! I now know that just dealing with what was going on after I got the chronic bone infection (osteomyelitis). I can see that that was just too simple. I have been having extra pain (pain that is not my norm) and this pain was interrupting everything that I do in life right now. I have pledged to help as many pain sufferers as humanly possible before I pass and some of that time is being cut down too! I feel as if my body has regressed back to that time when I was bedridden! I am somewhat couch ridden.

    I recently had to go to the ER because of a urinary tract infection that was not responding to oral antibotics. I was also running a low grade fever. I thought maybe the staph infection (osteomyelitis) was at it again. I was very wrong. A CT scan was done at our little hospital here and compared to one in 2012. There is a fusion there, but also the broken hardware is there also. Just to add to the norm, it was found that in the 2 years that the scans were taken, it shows that my lumbar region of my back is not right on top of the sacral region.

    I was taken by ambulance up to Las Vegas again to have a neurosurgeon look at my spine and make a difficult decision. The question posed was if surgery could help! Both choices were difficult. If they did surgery, they would be opening my whole body to get staph. The other choice was to leave it alone and wing it and hope that I don’t become a paraplegic! Great choices huh? Because we are more familiar with my body and how it deals with the staph, it has to be left alone. Since moving here I have had the staph go to my heart, hip, fingers, shoulder, etc. There are more risks with doing the sugery and there are no guarantees! Now, Dennis and I have had to hire someone to help out around the house and bathing me, doing beds, laundry, shopping, taking me to appointments, etc.

    Nursing won’t cover it anymore so we are having to pay out of pocket for it. We are really finding out that the settlement received from work comp is not enough to cover me medically for the rest of my life!!! Too many unexpected things have happened and we have been unable to find a secondary insurance for me. I am not old enough!!! So, here I am again adding to my story.

    It has taken 2 years for me to redesign the website, but getting the information out to old members has been difficult! We also have some difficulties finding volunteers to help with the site! The board of directors of our wonderful website decided that we would continue what we have been doing and hope in time, we will find volunteers to help. In the meantime, if any pain sufferer has issues and needs to talk, our small staff is available to help out 24/7 by phone, email or note on the site. If you are in crisis and need to talk just to me, let me know. My email is drpattyverdugo@cipay.org. Our phone number is listed on each page of the website. We live in Nevada now, so our time difference is pacific time. If you are interested in volunteering, let one of the administrative staff know, and they will let me know.

    I plan on keeping the site updated and bringing you information that I have in the past. It just might take a little more time for me to get back to you.
    For those of you who don’t know me, I have dedicated my life to helping other pain sufferers. I hope that the issues everyone reads might help another sufferer to not make my mistakes!


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