I announced yesterday the sadness at my sister losing her husband. I don’t ever remember her not being married to him. They have lived in the same house for over 35 years. I called her and let her know of my sadness at his passing and that I send my heart to her.
The main reason I have started this blog was at the advice of several key people in my life. My therapist and several wise women in church. I have gone through several trials in the last 6 + years that I honestly would never, ever wish on anyone. I am hoping that my struggles through these trials will give others the strength to walk on.
Each year for the past four years I have had a saying or mantra. Two years ago it was “Just Breathe”. Last year was “Keep going – step by step” then it switched back to “Just Breathe” after I was preliminarily diagnosed with an interstitial lung disease called pulmonary fibrosis. I want this year to be “I am an unstoppable Warrior” from the attached picture.
I remember the days when my husband was first having mental problems, it was all I could do to go through another day. Now when I wake up, it is blessing and a present.
I am attending college via online. It is a lot of work. But I am loving it and have maintained at 4.0 GPA which has placed me on the President’s list for over 5 terms. I have about 4 more terms to finish. I should be done by this time next year. God willing.
The picture of me speaking is from a speaking engagement of April 2015 at the Red Carnation Queens Event sponsored by Dr. Maritza Montano. It is mostly professional women sharing their words of wisdom, financial and emotional triumphs and a splash of fun. Be on the look out for tickets. It is a fundraising event that includes a spectacular meal, freebies, silent auction and a drawing. Some woman is given a scholarship to continue or start her education at a local college. I was speaking about my view of my adventure of dealing with my husband’s mental disability and those who helped me along the way.
The adventure you will be joining me on will include my trials with getting disability for my husband, getting the correct diagnosis for my illness, receiving care, dealing with household burdens, maintaining a healthy relationship with Jesus and being a warrior in this age of helplessness and victims.
It is my goal to start everyday in the Word of God. I read at least a paragraph to a chapter in the NIV version of the Bible every morning. I am currently in Psalms. This morning was 57 when David was running from Saul. I also share “The Upper Room” daily devotional out loud at work each morning. Several people stop and listen. Some days God’s words speak more to me than others.
Now that you have some background, let’s start with the nitty gritty….
I got a chest cold in May near Memorial weekend. It was the usual low grade temperature, mucus producing, achy chest cold. But, after waiting two weeks, I knew something was wrong. After three weeks, I spoke with a dear friend and she suggested I see a pulmonologist since I have a history of asthma. I thought, why not? My primary had been wanting me to see one for years. So, I made the appointment. There was a month wait. Not surprising for the Miami area. You will die before you get to see a specialist.
I finally went that first week of July. They made me do this test called spirometry. I almost passed out and after about 16 times doing the test, I told the technician there was no more air to blow out. An x-ray was taken. I saw the Doctor. Very nice man. Out of professional consideration, I will withhold his name. His staff was so very client friendly. He changed up my meds a little, added Allegra D and sent me for a CT scan since the x-ray had signs of scarring. (From my point of view, it looks like a cat got a hold of my lungs.) He had the nurse give me a steroid shot.
Proceeding to get the CT scan was another adventure. Trying to find one that does not charge your deductible was an adventure. Finally out of desperation, I called my health insurance. For once, they were helpful and steered me toward a radiology lab that does nothing but various radiology labs. I thought I had it under control. Made the appointment, faxed over the lab request and health insurance information. Bam, the morning before the lab called and stated the health insurance would not cover the exam and it would cost me my left arm. So, here I go doing someone else’s job again. The doctor office was to call in the exam for an authorization prior to my scheduling. So, I played tag with the doctor’s secretary until we got it straightened out. She was very professional and helped me immensely. She called me back with the authorization number in case the lab didn’t get receive it from the insurance company. That only delayed the appointment by another week. So, now we are at the end of July.
I should have known something was more wrong than just my asthma. After receiving the steroid shot, I was able to breathe a ton easier. But, not as deeply as in the past. The technician during the CT scan asked me what seemed like five times if I smoked. I repeatedly told him no. I received a DVD to take back to the pulmonologist.
That was another three week wait. Shock of my life happened next. You always think that when you are told you don’t have much time left, you will accept it graciously. I didn’t throw a fit, but I did cry on the way home while talking to my sister. The doctor informed me that about a third of my lung capacity was gone. Once damaged, the lungs to do not recover like a liver will. I had a lot of scarring and was preliminarily diagnosed with Pulmonary Fibrosis (PF). He shook his head and wanted me back in two weeks for more testing and a referral for a second opinion. (Of course I looked it up on line. American Lung Association stated that IPF diagnosis gives you anywhere from 2-5 years to live. I cried some more.)
At the beginning of September, he had an oximetry test done. Did not go as well as it could have. He asked me if things had changed for me. I said, yes. Shopping was exhausting now, getting out of the bathtub was now very hard and trying on clothes would bring on coughing attacks. He nodded and prescribed oxygen at night. He explained that there were drugs to help slow PF, but once the scarring has started, it continues. I was referred to UM specialists.
Wow!!! What a difference. Everyone at work immediately could tell. My face was no longer puffy, I slept through the night and I felt re-energized. My son commented after the oxygen that I had been coughing in the middle of the night in my sleep and now I was not.
I sat my son, daughter and husband down and explained the diagnosis and the fact that I was being referred to a specialist that deals with nothing but pulmonary fibrosis. In the mean time I took advantage of my legal plan through work and had my will packet done. I was able to get my health directives, living will, will and durable power of attorney done for free. I let my pastor know and those I am close to at church. I jokingly told him that I would be making an appointment to plan my memorial. He just smiled. He had known someone else who had the same diagnosis and the end was death after only a couple of years. But, he said he would lift me up in prayer. I told him that was more than I could ask.
I popped in to my primary for the annual wellness visit the health insurance required in late September. I gave her a copy of everything from the pulmonologist. She looked at it and then pointed out an unusually high reading on my ANA testing. I had seen it, but didn’t really have a clue. She suggested that maybe some of my problems over the last three to four years may be Lupus related and suggested me to see a rheumatologist. I kindly explained to her that I could only afford one specialist at a time. Of course, I ran home and looked up ANA and Lupus on the computer. I cried.
The next step, the process of getting everything ready for an appointment at the UM specialist. What a process in frustration. First of all, all my records had to be faxed over including all my labs and tests. It had to be sent three times! I sent it once and the doctor’s secretary sent it twice. Then it was assigned to the wrong doctor, having to start the process all over again. I really appreciate the doctor’s secretary and wrote a letter to the doctor letting him know how she really helped me. The appointment was to be in March 2016 if I was to stay with the specific doctor or the beginning of December if I would switch. So , I switched. And of course, I cried some more.
Next to come UM staff and latest labs and diagnosis……
