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Being sick sucks..and so does being unemployed.

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Its been a while since my last posting, and a lot has changed, yet stayed the same.

Jan 3rd, I ended up in the ER due to the inability to breathe. Once again, they were concerned about a clot, and wanted to verify one wasn't there. While they did not find a clot, they did detect some "shadowing" on the x-ray. They did a ct, and some additional blood work.. ruled out that I wasn't in any immediate danger, and sent me on my way. Due to the severity of the symptoms, and the imaging findings, my pulmonologist decided I should bump up my appointments to try and get some answers.

Thank heavens my echo was ok, so we were able to rule out pulmonary hypertension. The doc was able to detect a "fine broken glass" appearance on my ct, but is unable to tell exactly what it is. She sent the films to be reviewed by the Hopkins 2nd opinion/radiology team.. and in the meantime we did some function testing.

For some reason, every time I have complained of shortness of breath, the doctors always want to say its asthma. Take this inhaler, lets try this or that based upon asthma. I have argued that often times, the inhalers make me feel worse.. and finally the testing proved that. What's sad is that I have about 50% of the capacity someone my height and weight should. The ratios are in the normal range as far as inspiration/expiration, So its definitely a restrictive, not obstructive disease. So the key is to figure out what is taking up space, making it difficult for my lungs to do their job. It could be endometriosis, however since I don't have the classical presentation of actual lung collapse, they are wanting to try a few other things before diving in and taking a look.

When my next set of follow up appts came, the 2nd opinion department still hadn't had a chance to read my films. So consulting with another doc, they believe that a lot of the issue revolves around excess fluid. This was noted on my u/s and their belief was the shadowing on the xray, and ct was indications of fluid. So they put me on a water pill to try and remove the excess fluid, and see if they improves my function. While in some ways I am happy they don't want to jump to surgery right away.. in other it is so frustrating because we still aren't 100% sure what we are dealing with.

My pelvic appointment was very disappointing. Seems there was a mis-communication/misunderstanding about what my complaints were. I do well 50% of the time. I don't have a lot of pain, I can work, play, and function just as well as anyone else. 25-30% of the time I deal with moderate pain, some shortness of breath, and fatigue. 20-25% of the time.. then its hell. Though I have learned to deal with even this phase except for a couple of days where I literally can't make it more than 10 ft w/o gasping for air, or speak more than 2-3 words w/o doing the same. I don't think it is good for me or the patients quite honestly to be there is that level of distress.

For some reason they thought my pain was more due to bladder issues (granted I can not fully empty my bladder at this point due to adhesions) As far as pain was concerned, was told that it could be just the nerves stuck in a reflex sympathy mode. Was offered nothing more than the ibuprofen that I currently take, except to increase it more, and take it "proactively" instead of reactive. I could buy that the pain was reflex sympathy syndrome if it occurred all the time. If it didn't matter what time of the month it was, or what I was doing.. if my breathing wasn't also affected, along with other things. If my issue was just constant pain.. I could accept that diagnosis and I would be more open to ideas about nerve blocks, etc. However, we know that there are issues. Physiological issues.. After having to explain myself 3-4 times.. consulting with the referring gyn another 2 times.. we finally got on a plan. Before we decide where to go from here, I am getting a solid check up from the waist down. That way when we do surgery we will know exactly what we are dealing with. My biggest concern though now.. is *if* I want her to do the surgery. One reason why I heeded my friend's advice was because I wanted an endometriosis specialist to do the surgery. If I am willing to get rid of my womanly parts, I want someone who can take care of the whole job, and get all the endo out so I will have minimal chances of recurrence. She has some training in that area.. but her primary specialty is urology. She admitted that complex endo cases really aren't her thing..

Of course, the schedule is kind of full and crazy.. so it will be a few more weeks before we can begin that round of testing. So in the mean time.. I came back home to Indiana. Of course.. I get home only to get a message two days later that the 2nd opinion team agreed with their assessment, and I should get that thyroid nodule checked out ASAP! It could be cancerous.. lovely..

One of the joyful things (read sarcasm here) that happened while I was gone was my employer sold his practice. It had been in talks for several months, and I was assured that my job would be secure. The doctor I worked with had a heart attack in the spring of last year, and while he has done remarkably well recovery wise, he just doesn't feel as up to the rigors of running two practices. He opted to keep the location closest to his home, and sold the one I was in charge of.

During the time I was gone, the new doctor was there assessing the way the practice was ran. Looking at the software, seeing our flow, etc. Of course, it wasn't quite the same, since the office was short.. and I didn't have a chance to really show him what I bring to the table. On my first day back, I asked if I could speak to him. He had handed me a packet with a cover letter on it basically stating, your job isn't secure and if you want to work with me, you need to apply and go through my process. This set my hair up on end, since I knew he had no idea what I could do. My co-workers and Dr. H all assured me that I would be retained. How could he not? I am the "brains" (their words, not mine!) of the whole practice. However, I wanted to 1)be honest and let him know what I was facing.. 2) get a feel of whether he was going to work with me and 3) see if we were going to mesh or not. Considering that he asked if I really wanted to work, if part time was even possible, and had NO questions for me other than availability wise.. I was even further on edge. He told me that he would have an answer for me in a few days.

Over the next couple of days we find out that he had bought another practice a few months ago, and has them set up with different software that he hopes to link between practices. He also has a back office with an insurance person, an admin, etc. He joined Vision Source, and I think he could tell that I am the type of person who will question why you make certain choices. Not that I want to imply you are wrong, but to understand what's important to you. If you like vision source cause it is one bill, has discounts on the things you want, like payroll services, and differentiating your self in terms of product isn't as important as pushing tech and fashion.. hey.. more power to you. It lets me know what I should be thinking of in terms of products I bring in, how I phrase things to patients, and when I motivate staff. Of course, I also have a tendency to do what I think is right for the patient and practice, and used to being able to make judgement calls. I think honestly that while my availability is an issue, the fatal blow was that I am a strong admin/optician and he didn't want to deal with the issues that could create if he has his own game plan in place, and I might question or make him doubt it.

So Jan 31st was the last day the practice was owned by Dr. H, and thus my last day too. It was a tremendous blow to the ego to think someone didn't want my skills. Then to be told of the decision in front of my husband (who was there to pick me up) and my fellow colleague was salt in the wound. I asked the new doc what factors influenced his decision and I got the bad break up speech. "Its not you. Its me." Meh

Normally I would not be so concerned. I have many connections, and friends in multiple optical places. I am sure, even if push came to shove I could go back to a chain and they would love me. Maybe I could make America's Best something mediocre, since was the one thread stated.. (and I agree!) they are America's Worst! However, with my current medical issues, who will want to hire me? Sure, Dr. H has agreed to give me a glowing recommendation (he told me that he was saddened by the new doc's decision. That they had a gentleman's agreement and he thinks it was the wrong move. However, it isn't his practice any longer..) I have some of the best references in the local optical industry... but who wants to bring on a person who will need to work off site for at least one week a month.. for 2-3 months.. followed by 6-8 weeks off for eventual surgery.

With that in mind.. I filed for unemployment. In fact.. I am thinking this could be a good thing. With my former position I had only 1 week off a year, and no short term disability, not even the AFLAC I had asked for and would have been paid 100% by me. I have been going w/o pay for all my visits since this more critical state came up, and had been trying to figure out how to prepare/save when you were paycheck to paycheck to start. Lord I would hate to think what things would look like if we bigger house they tried to say we could afford, or had a car payment!

So with unemployment, I feel that I can say I am able to work full time. Because when I am in Baltimore, I can do things on the computer, make calls, etc. if that was part of my duties. While it isn't the same as what I would get by working full time, it is allowing me to focus some on health issues and getting my house in order. Don't get me wrong, I am still looking for work. Be it fill in/temp or finding that ideal position. I am just steeling myself up that chances are it won't happen for a while cause of the current health issues.

Now if the thyroid is a bad situation.. then I can look at disability.. It just so hard to think about that.. and even the unemployment after working full time for 16 years, and contributing to the system for 26. (Had my first job with a paycheck and reported earnings at 12. Picking strawberries.) I still keep hoping that I will win the lottery or come into a windfall so that I can open up my own non-profit lab, hire Jacqui to help run it with me, and gallivant across the globe teaching and giving.

So while its only the beginning of Feb... I can't say much in terms of it being a better year. Then again.. I suppose its just bumps in the road to get me to where the real healing begins..

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  1. skt's Avatar
    thoughts are with you................
  2. cocoisland58's Avatar
    Jubilee, the loss of a job often leads to better things. You sure have your plate full. Best of luck.
  3. MINCEYEYE's Avatar
    Hope its not to late to suggest to get an echocardiogram and have your ascending aorta evaluated for any tears or even the descending aorta.I recently had my second open heart surgery for a torn ascending aorta. It took my MD 5 weeks to get the right diagnosis when they found it i had surgery within 12 hrs. John Ritter went to the hospital with similar complaints and symptoms they failed to pick it up and sent him back to the studio where he collapsed and never got up. HOPE I AM LATE AND EVERYTHING IS BETTER FOR YOU.MY PRAYERS ARE SENT TO YOU AND FOR YOU AT GODSPEED.
  4. Danielle Cherie's Avatar
    Here is another idea...if you are still having trouble with breathing. You can check your house for mold. My husband and I used the in-home-mold-test kit available on different websites. One website is called 1-877-665-3373 It sells different types of kits, depending on your needs. We found that we had 4 different types of airborne molds in our east bay home in cali. We tested our home because my husband and I were getting headaches and scratchy throats when we were home. We always felt clearer in our heads when we were outside of the house. We tried reporting it to the county, but in Alameda County, there is no department to complain to. This is why our landlord could say without lying, "There has never been any report of mold..." This makes me sad to remember. I asked Mr. L. about reports of mold ahead of signing any lease agreements, educating Mr. L. in my husband's allergic reactions to mold.
    Mold can kill, debilitate and make you sick. Please check your home for mold. Get out ASAP if you find any mold. Allergies to mold only worsen with exposure. I was not sensitive to mold until the second home I lived in exposed me to it for several months. My life is happier without that infernal bio-machine.
  5. Alan W's Avatar
    Hi, Jubilee
    It's been a really long time since I've visited OB, much less posted. But, more than any I was caught by your post. I am missing any reference to a complete cardiac workup. That's a must, because, as was in my case after all the medical dudes attributed shortness of breath and some pain to fibromyalgia, anxiety and diabetic neoropathy, the result was a couple arteries were 85% closed. 5 years later I breathe very well. So much is dependnt on the big O (not Opra Winfree) but oxygen, that its not easy to know what else has to be done elsewwhere in the 'ol bod until there is a reasonable amount of circulation. I now have 6 many I can't bend over! But, feel fine. In the 38 years I lived in the San Fernando Valley (now Houston) mold was never a problem. Not to say it never will.....but, it costs less to get checked out than rebuild your family room and bathroom. That's my take. Thanks for listening.
  6. Frog4aday's Avatar
    Hi Jubilee,
    I rarely visit OptiBoard, but came on to see if people here were aware that GMC (Gary McArrell) had lost his battle to lymphoma. And I saw you watched his posts closely and responded often. Now I see why. You are enduring your own medical nightmare and employment issues and are obviously most empathetic with others that are suffering, too.

    I'm so sorry you lost your job. That is a devastating blow to the self-esteem AND the finances. Wouldn't be so bad - as you said - if you were perfectly healthy and could offer another employer your services, without reservations. But your current health problems don't even make that an option.

    Please know that many people on here obviously care about you, want you to get the right diagnosis, and get healthy again. I want that for you, too. God bless you in this time of difficulty. Prayers go your way.


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