Follow Ups are getting Hard When you get Referrals at almost every appointment

Today I will admit I went to my doctors' appointments a bit apprehensive…after my ultrasound at the beginning of September, I was already very nervous about what to expect when I saw Dr. Masters today, and I guess I had good reason to be. She is repeating the ultrasounds in two months, but my uterus was enlarged, we don't know why…she did a biopsy…or rather attempted to, we will know more at the next appointment if it will need to be repeated, if it does, it will be done in the hospital, under anesthesia, since this one was so hard to get. I pray she got enough to get answers…

If the uterus is still enlarged during the next ultrasound or the bleeding is still acting up, well…we will make a next step at the end of November, I see her again November 30^th, I have to schedule the ultrasound yet.

My blood Pressure was good at BOTH appointments for going through all the stress of the day, lol. 128/78 and 118/68 at the second appointment and they were in the same building and a little over an hour apart.

After I scheduled my follow up with Dr. Masters I scheduled my EMG with Dr. Rossi, that is November 5^th, woo hoo, so exciting, can I skip that one? PLEASE? Just had a funny thought that I could have my old neuro do it, lol, NOT gonna Happen though, and I won't stop liking Dr. Rossi cause she does it, so I don't really have to worry about it either.

Then I walked across the building to see Dr. Dobrin, what a hassle…my Medicaid is a pain in the dupa, because I didn't have a card when I came in the FIRST time, they didn't set it up right, well the lady who drew my blood put it in, but apparently my doctors office and the lab don't bill TOGETHER, so she has to resubmit everything from the FIRST appointment, which is a HUGE appointment cause they ran a gazillion and 50 tests, SO…anyhow…they had a cow about resubmitting it… that's why I am so proud of my lower blood pressure, I was getting really stressed out.

I FINALLY got back to see her, and my stress level went through the roof, but my blood pressure behaved and stayed down, She doesn't like my scabs not healing, my liver enzymes are still too high, and about the only thing that IS working is my sugar…I did mention my breathing issue and my CPAP issue, so she is sending me to a Dermatologist about the open scabs that just won't heal, apparently that's not a good thing, she said if my sugars were high, it would probably be because my diabetes is not well controlled, but my sugar averages 115-118 with the Metformin so obviously that's not the case. She asked about my Pulmonologist and said she doesn't like her, since it's been about 2 years since my last sleep study she wants it repeated and wants me to see a different pulmonologist, I think mine had given up on me cause CPAP wasn't working, but she said not to be surprised if the pulmonologist sends me to see someone else too…which I wont because Dr. Shanidze kept saying I should see a cardiologist for my breathing issue (which I thought a funny thing for a doctor who specializes in the lungs, but my lungs aren't the problem…

So anyhow, I have a call in to the Pulmonologist, I have to call the dermatologist in the morning, and I see Dr. Dobrin on October 28^th. So my October is no Oct 22, 28, and Nov is 2, 5, 11, 23, 30 with 3 to be determined

Sporadic posting at best…it has been a Hectic Month and very overwhelming

September has been almost as hectic as August was. I knew it wasn't going to be an easy month, so I was a bit prepared, but I don't think anything could have prepared me for the whirlwind that has turned my life upside down, I guess I had forgotten what it was like to have thorough doctors who actually cared about their patients.

I had moved my medical care from one hospital to another in our local area, we do not have a CLOSE hospital no matter what, the closest hospital that is a REAL hospital capable of handling my care is a good 45 minutes away in ANY direction, we have two that are not able to handle it that are closer, but as I said, they are not capable of handling it and I have to head either to Detroit, Southfield (NOT HAPPENING, they tried killing me, see posts from Early to middle 2008) or Troy…

I have been to Detroit, they keep having me see the same doctors who do the same nothingness and send me back to the same docs who do the same nothing…anyhow, it was an easy decision from there. What I wasn't prepared for is follow up care. I had seen a PCP, Neuro, and Gynecologist, who all sent me for tests, those tests some had to be repeated…the ophthalmologist sent me for tests (I was NOT happy about having that redone again, it was early but I did need another tap because my body responded very well)

I also saw a Podiatrist for the Diabetes…a routine exam, or so I thought…man was I wrong…to some degree anyhow. I had said all along I was PRETTY sure that my sugar was NOT causing my nerve pain, at least I now know I was right, in a way I am almost upset I was.

The new doc…I saw this morning, was once again a Beaumont doc, VERY thorough, and decided that the nerve pain was kind of important… ok I want to be out of pain all the time so I happen to agree there…the rest of the appointment kinda threw me though, he decided we would X-Ray to see that it wasn't anything Bony causing issues…HA, Leave it to me to have developed Bone Spurs, now, these had to have formed sometime in the last 9 years cause they were NOT there when I had my fractured foot and was there in 2001 before I got pregnant with Lauren (ya I went to the same foot place)

I also have High arches, OK, so why wasn't THIS a problem 9 years ago? During my pregnancy? Even up til oh…the last 2 ½ years? Ya he didn't have THOSE answers J

What did he do…well, this routine exam turned into almost an hour long ordeal, actually a little longer, He checked my circulation, he tested my nerves, the tuning fork thing, I so hate that cause it hurts on my left foot and ankle, he thinks I may have tarsal tunnel syndrome, the foots answer to carpal tunnel…then he did x-rays, explained THOSE findings, then did Ultrasound massage, NOT comfortable for painful feet and ankles, but didn't complain, just wanted to go home…was frustrated for being honest…Then he gave me inserts for my shoes which now my back and feet hurt more since my shoes now feel too small on top of everything…OH and I have a script to have an EMG and NCV of my foot and ankle to rule out Tarsal Tunnel, that my lovely neurologist gets to do…

I saw my Pulmonologist and I have lots of questions for my PCP since I feel my shortness of breath is something we need to worry about since my pulmonologist seems to care, but only when she isn't rushed…my left chest hurts all the time now…so we need to figure out what's next there too…my mask keeps starting and stopping…too much crap

With IH, Chiari, Sleep Apnea, and Nerve Damage, I really Need just one thing to NOT be complicated, praying that one thing comes with the results from my Gyn appointment on Tuesday, we are discussing permanent Birth control since I am still cramping and spotting but my period stopped a week ago, I also didn't have one last month at all, and they are super heavy when I do…Ugg…I had to have the ultrasounds for that repeated too, scared me to death…but everything happens for a reason…I just don't know WHAT that reason is.

Coming to terms—living with disabilities

This has been a hard year. I have known for a LONG time that I have had limitations, they didn't really get to me until they started getting to my family.

September is Awareness month for two of the most disabling conditions I suffer from, both Intracranial Hypertension (IH) and Chiari Malformation (ACM) have awareness month in September. Why they put themselves together many of us are wondering, possibly cause Many of the symptoms are very similar, we don't know. For whatever reason, they are both in September.

I know many people over the years have criticized me for not going up and praying for healing week after week, year after year, after all, I am a Christian who believes God can heal ANYONE of ANYTHING, IF
it's God's will. Needless to say, while I pray and hope one day they will find a workable cure or treatment for both of these debilitating diseases so we do not have to suffer, and others after me will not have to suffer. God has been using this disease in my life for over 21 years. I have seen his work, He has brought people IN my life, he has worked through my life, and he has definitely used EVERY surgery, hospitalization and doctors visit for his Glory. I do not feel as if it's a punishment, like I did at 12, 13, and 14 years old when it started. I remember feeling like Job. I remember grumbling and asking God "HOW MUCH MORE?"

A wonderful Mentor by way of my pastor's wife back then, gave me some wonderful words of wisdom, I held them through every trial from then on. Tena said to me, in a counseling session when I cried I wanted to know what I was doing wrong that God was punishing me, she said that it wasn't what I was doing wrong, but what I was doing right, in tears, and pain, I then stopped and asked what I was doing right because I still wanted to be out of pain and I would stop that then. She then explained that these tests were going to be part of my testimony for the rest of my life…I did not realize then, that they would last so long, or have such a profound impact on so many lives.

God has had a very detailed plan for EVERY life I have encountered, I do not know where or how they have all turned out, what I do know, is that I have never put an opportunity to share him through this to waste. Each new diagnosis I have had added, I have cried over. It was VERY hard to be put on a walker at 32, it was great to go to the cane, and devastating to go back to the walker.

I cried when my rehab doc said paralysis instead of radiculopathy, I freaked out a bit, It was hard to take. When they diagnosed me as borderline diabetic, I was almost ok with it, til this week when I learned there is no such thing as Borderline and its actually diabetes, pretty well controlled, but diabetes nonetheless. When I saw my new gynecologist for irregular bleeding, and an annual exam, pretty routine or so I thought, and she is sending me for ultrasounds and a mammogram and breast ultrasound cause she found a mass, I know God will use that too. Needless to say, I am a bit overwhelmed.

I have so many appointments my calendar looks like it has the chicken pox.

 

If you know someone with a rare disease or disability, take the time to let them know you care about them, and that you are concerned, don't act like they have the plague or treat them like they are a burden cause they are sick, they feel it enough from their own minds. We have enough on our plates emotionally, please remember to think about how you would feel if it was YOU who had that rare disease that only affected a few people.

Often when I go to the doctors office or hospital the nurses and sometimes even the doctors unless they are "my" doctors do not even know what the diseases I am talking about are. I was blessed the day I was diagnosed, a Physician Assistant had seen it in a text book in medical school and I fit the profile, I had already been symptomatic 9 years. The Chiari they found by a neurosurgeon who was a 2^nd opinion. He saw it after my shunt had come OUT, but he saw it in the CT scan before. Basically who knows how long it had been there.

Both diseases are extremely rare, and most people do not know what they are. A support group led me to facebook and a Multitude of friends who know my daily struggles. But those who really know me, I know very few who really know who I am and what I go through. There are three people at church who ask me how I REALLY feel when I say I am fine. One knows why because she has been there with the rare diseases… The other, she just Understands, God has blessed me with a few people to confide in when I need to talk.

For more information on my illnesses feel free to ask, or peruse these links,

www.ihrfoundation.org

http://www.conquerchiari.org/